tag:blogger.com,1999:blog-65546199917939049732024-02-20T12:57:57.154-08:00Never in my worst nightmaresAnonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.comBlogger86125tag:blogger.com,1999:blog-6554619991793904973.post-12715905602784444152014-12-02T07:17:00.000-08:002014-12-02T08:05:38.877-08:00It saddens me beyond comprehension to have to say that Amber passed away around 1:15 Monday morning. This blog was a great outlet for her to be able to keep everyone informed and to mentally unpack everything going around in her mind, so that is my intention with writing this final post for her.<br />
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I'm going to try to pick up from where she left off in her last post. Amber had the tube in her right lung moved to hopefully be in the right spot for us to drain her at home without any issues. The new drain location seemed to be correct because her home health nurse and/or Don were eventually able to drain her every day and get a good amount of fluid off her right side each time. While it's not great that there was enough fluid to have to drain that often, it was nice to know that we could take care of her at home rather than have to take her to the ER or hospital for the more invasive and painful thoracentesis procedure.<br />
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Her wound care from her implant removal was going great. A home health nurse came daily for cleanings and bandage changes and eventually my mom was passed the torch and was able to take care of it herself. Amber usually just laid back with a towel over her eyes while this was done because she didn't want to have to look at it. This was usually a time for her to just get to chat with the nurse or my mom. <br />
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Amber had some very special nurses that were taking care of her. She really came to love Nancy, the nurse who was there most Mondays-Fridays. Nancy turned into more than a nurse, she was a friend and a voice of reason. Any anxiety or concerns that Amber had regarding her health or just life in general, she could run by Nancy and trusted whatever she had to say.<br />
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Last Wednesday, November 26th, Amber and my mom went to see Dr. Phillips. She was there for a check up and to discuss the plan for her current chemo moving forward. They had done some recent blood work that had shown that Amber's cancer markers had risen, which had caused her to worry about this appointment and what Dr. Philips was going to tell her. The appointment actually went pretty well. She was checked over and told that things seemed about the same. Amber and Dr. Philips talked over the plan and both decided that she would try one more treatment on this chemo, and then if they felt that things still weren't working like they should have been, that they would move on to the next drug.<br />
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Mom stayed with Amber the rest of the afternoon which mainly consisted of relaxing and some naps thrown in here and there. Mom had noticed that Amber was a little confused and sometimes wasn't making much sense. I think we all chalked it up to her not getting enough sleep at night and just being overly exhausted. Once Don got home from work, mom left to go back to her house to start preparing her dishes that we were going to take to Thanksgiving dinner at Don's brother's house the next day. Don and the boys were hanging out with Amber in the front room where Amber had been sleeping for the last few weeks since walking up the stairs was too difficult with her breathing the way it was. Since she had been sleeping on that couch, someone had always been there to sleep on the love seat beside her. That night Don and I both stayed (along with Justin since he didn't have school the next day) for a sleepover because we both were just very concerned with how disoriented she seemed to be and the fact that her Oxygen saturation dropped very low each time she moved. It was a very long night and it crossed both Don and my mind several times to call a nurse to come out or to take her to the ER, but Nancy, her nurse was already planning on being there bright and early Thursday, and each time we asked Amber if she thought we should call someone, she said no. We both honestly thought the confusion was due to a recent increase in her Xanax prescription.<br />
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We did call mom at around 6 Thursday morning to have her come out. Once she got there it wasn't long until Nancy showed up. Nancy, as I already said, was the voice of reason. She convinced Amber that she needed to go to the hospital. She estimated that she had about 40 extra pounds of fluid from her hands, feet, and stomach which was much more than the day before (if you remember from her last post, fluid buildup and swelling had been happening in her left foot and it would come and go.) <br />
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Because her oxygen levels were so unstable when she tried moving too much, we decided to call an ambulance. She called Justin and Ryan into the room and was able to explain to both of them that she would be going to the hospital and that an ambulance would be coming to get her just so they weren't surprised or too scared. They handled it well and once the ambulance got here, they both went to the other room to keep watching SpongeBob until they had loaded Amber into the ambulance, then they went to the front window to watch until they drove away.<br />
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Once at the hospital Drs and nurses checked her out and took some blood tests. It was found that she had a buildup of carbon dioxide in her body from not being able to breathe out enough to expel the waste. They also saw that there was fluid collecting on the left lung and around her heart. This extra fluid and the fact that we only had the drain on the right side caused the buildup of carbon dioxide. The CO2 buildup was the cause for all the confusion and disorientation she had been experiencing.<br />
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They decided to put her on a bipap machine which was a big face-mask which blew oxygen in and sucked CO2 out in attempts to lower that CO2 level. Amber hated that machine. It was big, and had to be strapped to the head for suction to work correctly. With her already being confused, it was hard to explain why she needed to wear it and keep it on. It was explained that if the bipap machine didn't work well enough to lower her CO2 levels, that she would have to be put on a ventilator which would work more effectively. While we all obviously wanted to try to avoid that having to happen, Amber and Don both discussed it and agreed that if it came to that point, she agreed that she wanted to be put on a ventilator. This was because it wouldn't be meant as a permanent thing, it would just be used to lower the carbon dioxide and then she would be taken off of it.<br />
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Friday morning they ran a lot of tests; chest x-rays, and echocardiograms, and also drained her left lung. Friday afternoon Amber asked to speak to Don alone with a social worker about her plans moving forward after this hospital stay. She and Don discussed it at length and she explained that she was just so tired and worn out with everything that has been happening. She decided that hospice would be the next step. Rather than keep trying to fight, Amber wanted to be able to enjoy the time she had left without chemo and the side effects that came with it; unfortunately, that time ended up being much shorter than any of us wanted.<br />
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Jess was able to book a ticket to fly in on Friday afternoon and was there by 11 Friday night. When she got there Amber was off the bipap machine and just on regular oxygen. The nurses had allowed her to take some breaks from the machine for her comfort because having it on was so uncomfortable and caused a lot of anxiety. She was also able to talk easier without the bipap machine so it was good that she was able to visit with us more comfortably. <br />
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By Saturday afternoon Amber's carbon dioxide levels had risen. She was placed back on the bipap machine and we were told that she would wear it for two hours and after that two hours, another blood test would be done. If the levels had not gone down enough she would need to be intubated and put on a ventilator. At this point, she was sleeping a lot and had fewer and fewer moments where she was awake and alert to talk to us. During those times she was talking, she was still able to crack us all up. She's really always known how to work a crowd, that sense of humor didn't fail despite her body failing her. <br />
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While we were waiting for those two hours to pass before they would test her blood again, a doctor came in and spoke to Don. He explained that Amber's right lung was pretty much spent. He said that fluid would continue to accumulate in the right and left sides and around her heart. This meant that putting her on a ventilator to temporarily reduce the CO2 levels would essentially just delay the inevitable. Because of this, it was decided that she would not be placed on the ventilator. That would have just been one more procedure to put her through and that's not what she wanted. <br />
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Don took Justin and Ryan in to see her, one at a time. They both got to kiss and love on her, and she gave them each a stuffed animal that she had used throughout the past two years. Ryan got a ladybug pillow pet that Amber had taken to her initial chemo appointments back in 2012. Justin got a stuffed dog that she had cuddled with constantly for the past few months. She used this dog to prop up her right arm because of the lymphedema and swelling.<br />
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Around 6 Saturday night, after finding that her CO2 had not fallen like we had hoped, a hospice nurse came in and removed the bipap machine. They put her back on oxygen from a nasal cannula. This was much more comfortable for her. No one really knew how long she would be like that, but she just slept peacefully breathing from 6 until around 2am. At 2, she woke up and was talking to us. We each got to tell her we love her while she was awake and could respond to us. These moments were sacred. She was surrounded by her husband and close family and we love her for waking up and giving those extra few hours with us before she went back into a deeper sleep.<br />
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Around noon Sunday, she fell back asleep and just rested and breathed. We listened to music, some songs that she had written in a journal that she wants at her funeral, and some songs that she just always loved. She constantly had someone by her side loving her and holding her hand. While a lot of these moments were filled with tears, there were so many good stories being told and memories being remembered that her last few hours were also filled with laughter, which is exactly how it should have been.<br />
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Since June 2012 Amber didn't really have a lot of say in what was happening to her. She was told by doctors what she needed to do to fight the cancer and she did it. This was the first time in so long that she had a say in what she wanted and what she felt was best. She took her life into her own hands and left on her own terms; she went very peacefully. <br />
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"Just know you're not alone, I'm gonna make this place your home." Amber has always loved this Philip Phillips' song and now the lyrics have a completely new meaning. She's Home now with family and friends who have gone before and were waiting for her. She's free from pain, sadness, anxiety, drains, and tubes.<br />
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That song also works for the rest of us who she left behind. "Hold on to me as we go, as we roll down this unfamiliar road." We have to try to find our new normal and it's not going to be easy, but she brought so many people together and we have to lean on each other. We are all so happy to know that she made this decision and it was truly what was best for her.<br />
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A visitation will be held at Lawn Funeral Home on Friday, December 5 from 3-8pm. <br />
On Saturday, December 6 at Peace Lutheran Church, there will be a viewing from 2-3pm with the funeral service beginning at 3. There will be a reception to follow the services Saturday at a location to be determined. <br />
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<span style="font-family: Times, Times New Roman, serif;">Lawn Funeral Home: <span style="background-color: white; color: #333333; line-height: 19.5px;">17909 S. 94th Ave. </span><span style="background-color: white; color: #333333; line-height: 19.5px;">Tinley Park, IL 60487</span></span><br />
<span style="font-family: Times, Times New Roman, serif;"><span style="background-color: white; color: #333333; line-height: 19.5px;">Peace Lutheran Church: </span><span style="background-color: white; color: #222222; line-height: 16px;">1900 E Lincoln Hwy, New Lenox, IL 60451</span></span>Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com3tag:blogger.com,1999:blog-6554619991793904973.post-34464269373387899682014-11-12T16:33:00.001-08:002014-11-12T16:33:31.537-08:00It's MeOctober has come and gone and I didn't update once. There were so many times I wanted to or thought it was time for an update, but to be honest, I was extremely busy taking care of myself that I just couldn't. <br />
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October started out wonderful with a great turn out at the Making Strides walk. I again had over 90 walkers and I raised just over $6,000.00. I saw a lot of friends and relatives I haven't seen in awhile. Some high school friends that I don't think I have honestly seen since high school. It was just cool to have the great turn out. I was asked to speak during the survivor ceremony. I always get nervous, but when I start to tell my story, it just spills out and I barely need to use my phone which is what I use to take notes. I did not partake in the actual walk this year because I didn't want to get stuck out on the track and not have a way to get back. So I stayed back and visited with several of my aunts that didn't walk either that I don't see often enough. <br />
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Later that day I was to my parents to eat and take a nap since Jess was in with her boys. As the day went on my pain became quite severe that I ended up in the emergency room. All they really did was get me IV pain meds to get ahead of the pain. That night I had asked mom to stay the night with me because my pain was so severe and it helps to have someone be miserable with me. Kidding, I needed my mommy. We were up a lot of the night trying to find ways to get me out of pain. Nothing was working! The next morning just got worse and made my pain become numb.....Mom gave me the news that my grandma Freeland was very ill was not going to make it. This was terribly hard for me to hear. One of my very first blog entrees was written about her (Living Guardian Angel). I was so sad and didn't know how I was going to survive and continue to battle this cancer without her daily or more like hourly prayers, her handwritten cards and the masses she requested for me at her church. I was able to FaceTime her (yes she is very technically savvy) and tell her goodbye. She told me how proud she was of me and that she loved me very much and didn't plan on giving up on me. What made her passing special was a lot of my cousins and aunts were in town for the walk so they had just seen her or were with her while she passed. Had the walk not been that weekend, some would not have seen her in awhile and would not have had the closure they were lucky to get. I unfortunately did not go to her visitation or funeral. I wore myself out from the walk and have a feeling that was some of the reason I had so much pain. So I thought that Grandma would probably of been upset with me had I gone so I stayed home and just got updates from my sisters and mom So Rest in peace Grandma Freeland. I think of you daily and hope you are putting in a good word for me. <br />
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The following week I had a radiation to be continued, a thorancentisis scheduled for Tuesday and CT scan to check the status on the cancer. Monday during radiation I cried as usual because it is just so painful to put my right arm over my head for 10 plus minutes. After that treatment the doctor and I spoke and we decided I had had enough and that would be my last treatment. The thorancentisis went as planned. I hated it like usual but it was done and over before I knew it. Thursday was my scans and we all know how I feel about those. I was worked up and anxious but had an appointment with Dr. Phillips that following Monday. I woke up the following Friday and was very short of breath. To the point that I could barely talk because I couldn't catch my breath. So off to the emergency room mom and I went. We discovered that even though my lung was drained 3 days before, it still had fluid and needed drained. It was explained to us that from doing the previous 3 thorancentisis it had caused my lung to form pockets (caused from scar tissue) and within the pockets fluid was accumulating and if they didn't put the catheter in the right pocket, we weren't guaranteed to get the fluid. So I talked to a plural surgeon and he decided that I needed admitted to the hospital until Monday. He wanted to place a drain in my side for the weekend to drain as much fluid as possible and then on Monday place a different tube that would allow someone at home to go in and tap my lung and drain it when I felt it was needed. So as upset as I was about the admission to the hospital I was okay with it because it was very scary not being able to breath.<br />
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The weekend went by fairly quickly. I had lots of visitors and Don, mom and Whitney took turns spending the night with me and add dad and Wendy in to the above all made sure I was never left alone. And all did well with making sure Justin went to his soccer games and Ryan was cared for. I do not like down time or alone time at the hospital so the visits were great! Monday the procedure to switch out the tubes was done under twilight sedation but I don't remember a thing. Next thing I knew I was going home. But I wasn't going home alone. I unfortunately was also going home on oxygen as I am unable to hold high enough levels. I also was not going home without the assistance of a Home health care company who would come out and train mom, Don and Whitney on how to drain my lung tube. I also want to add that Don and I received some devastating news that my CT scan revealed that the cancer has moved to my left hip bone and also a small spot on my liver that is not guaranteed, but more than likely is cancer. So this going home was great because it was back to my safe hiding place where no one could hurt me with bad news. But really with everything else going on, I have to say that Don and I took the news with stride and just moved on. <br />
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After being home a couple of days, the home health care company came out to do the first lesson on setting up the tube to drain. We hooked up and did not get any fluid. This was not considered abnormal because I was just drained for a weekend. So it was decided she would come back after the weekend and try to drain again.<br />
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Next, remember my chest has a wound? I was seeing the wound center biweekly to ensure I was cleaning and using the dressings correctly. This had been going on for over a month. The radiation that was done was not helping because the skin on my right breast was not looking good. It went from skin color to almost black in a small section. According to the wound center, this was literally burnt skin and was probably dead skin. But keep it clean and hopefully we could get it back to normal or close to it. Saturday of that week I had spent the night with mom and dad the night before. While cleaning my wound, mom came in and we noticed that what we were told was a blister when I was in the hospital looked to my mom as my actual implant. There was no way right? So we called Dr. Phillips and she had us directly admitted to the hospital. But you know I have learned through this that most surgeons and Doctors don't work on weekends. (No offense) So I was admitted on Saturday and saw a plastic surgeon on Sunday morning who confirmed it was in fact my implant coming out of my skin. He stated he could not do anything for me on Monday but could on Tuesday. We all thought it was best that I stay in the hospital as I was at a big risk of infection. So again family set up shop at the hospital to keep me company and my spirits up. <br />
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On Tuesday the doctor came in and discussed the surgery and explained if all went well I would be going home an hour after the procedure. They were running behind in the OR (Operating room, see I think I am a doctor or nurse) so my pain meds had worn off, imagine that - it happens often when at the hospital. At first they did not want to give me anything but eventually after seeing the pain I was in, they gave in and gave me something. The surgery went as planed, but in recovery, I was in horrible pain. I remember laying there screaming at one point. When I got up to my room, I didn't even have to ask, it was decided I was going to be held up at the hospital another night. That was fine with me because as the night went on, I could feel my hospital gown getting wet. The wound was draining and had this happened at home, we would have ended up in the ER. I would much rather have my caring nurses at that point than the ER doctors who didn't know my situation. Even Wednesday I woke up and wasn't sure I could go home. Dr. Phillips and I decided we would wait until 3:00 to make a decision. Even at 3 I wasn't up to it, but I knew going home meant my bed, me controlling my medicine and my family! So home I went. <br />
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Being home a week was great until last weekend….I started getting short of breath. Last Thursday I noticed my left foot (opposite foot of cancer side) was swollen at the ankle. Those that saw me when I was pregnant….Just like that. So Friday when my home health nurse came over she called Dr. Phillips as they were both concerned of a blood clot. So as you can imagine, my mind was going nuts. I went to the hospital and was told an ultra sound and CT scan were ordered STAT (results to be read asap I think?) and that I was not to leave until I had results. So ultra sound first - no clot (Thank you GOD) next was the CT scan and again no clot but LOTS of fluid. Remember I mentioned the home health nurse was unable to get my home drain to drain fluid? We discovered that the catheter / tube was placed in the wrong pocket and the fluid was actually accumulating in the other 2 pockets. This caused the shortness of breath, but no explanation of the swollen foot and I think we were so relieved to hear it wasn't a clot that we forgot to ask why the swollen foot. So I was scheduled for this Monday to have th fluid drained and the tube to be moved. That procedure went well and tomorrow they will try to tap the drain and get fluid so please please please pray we are in the right spot and we can start draining from home. I hate the hospital with a passion and could really use a break. 3 surgeries in 3 weeks was not in my plans. Because of this, I have become very very weak and on top of it all, I am still doing chemo. Which is scheduled for tomorrow. YIKES!! So prayers for strength and lung fluid is needed and we appreciate it. <br />
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I do have home health care coming out daily to clean my chest wound where my implant was, they also will try to do the draining every 3 days. They also have a physical therapist that comes out twice a week who is helping with my right arm since I have somewhat severe lymphadema in that arm and my range of motion is horrible. Also they are working with my legs to help build up strength. So I am keeping busy at home. When I'm not doing this, I'm resting. I have grown to be used to the oxygen and feel somewhat dependant on it which I do not like. I have not made any outings besides doctor appointments as I get some anxiety that the tanks will run out and I don't like the looks I get. <br />
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Well, I'm off to have some pie. It is Don and my anniversary (9 years) so we had Japanese food and pie to celebrate! We thank you all for checking in on us and don't stop, I promise you aren't bothering us. When we get a text or call it brings a smile to our face to know you are thinking of us and rooting us on from the side lines. And the food! Wow! Overwhelmed and could use some of these recipes. That has been great! Prayers please for lung fluid and strength and for chemo to go over without any problems or rob me of any strength.<br />
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Love to all!!<br />
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Amber<br />
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P.S. The blog will not spell check so bare with me because I'm typing with a numb right hand!Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com1tag:blogger.com,1999:blog-6554619991793904973.post-83509811350638598292014-09-19T02:06:00.000-07:002014-09-19T02:06:06.400-07:00Pitch Perfect Anyone?d<pre style="background-color: white; color: #444444; font-family: 'Segoe UI', 'Segoe UI Web Regular', 'Segoe UI Symbol', 'Helvetica Neue', 'BBAlpha Sans', 'S60 Sans', Arial, sans-serif; font-size: 15px; line-height: 21px; white-space: normal;">Pitch Perfect at 2:30 am? I guess! Day after chemo just plain sucks!! I love the month in between but why the day after has to kick my ass so hard is beyond me. Pain, insomnia, anxiety, you name it! So Pitch Perfect it is! I hope this is my one and only complaint this month but it isn't looking that way just yet.....tomorrow I meet with radiation for mapping to hopefully have radiation relieve some of my pain so we could could cut down on my pain meds since insurance is already giving me problems on my current dosage so let alone if we I need an increase. I also will meet with a "sleeve" expert. With the chest wall having some healing issues, my right arm is now experiencing lymphadema which is highly painful causing my arm to look bigger then then other and it is had to touch and caused my hand to tingle. There is no fix besides someone massaging the arm. Any takers? I'll take you<img alt="Winking face" class="Emoji$1F609$AD8 RenderedEmoji" src="https://a.gfx.ms/emoji_1F609.png" style="height: 19px; vertical-align: middle; width: 19px;" title="Winking face" /> next on Monday I will have another lovely thoracestesis as my right lung is almost completely filled again with fluid. So that is all within the next 5 days with most of this needing some down time to recover and doesn't look like that is going to happen. Just a little nerve wracking when chemo enough usually takes me about a week to recover for. So am I scared and anxious? Yes.
To speak a little on the radiation, if you remember that was the plan back in July, but then was hospitalized the day before my appointment. They took me anyways for mapping, which is when they align your body and place permanent markers on your body so they radiate the same places every day. At that time they do a dry CT scan to make sure they are not radiating any organs. That was when they found the fluid in my lungs which meant the cancer had moved. The fluid removal trumped radiation and they felt it might alleviate some of the pain. It did not. So radiation is now back on the table. Because chemo and radiation can not overlap too much, it is important I sneak in the radiation within the month I'm off since they want to do 15 rounds. I'm not excited about this at all as this means 15 trips to the hospital, which isn't far, but when you go daily already too much, I just dread it....sitting in a gown, waiting my turn to be zapped, great company by the techs, but being zapped, burnt skin, extra soars... For me to do this, I'm putting a lot of stress into it to say if it does not give any relief, I will be very upset and it will not be a blog I want my grandmas to read <img alt="Smiling face with open mouth" class="Emoji$1F603$AD2 RenderedEmoji" src="https://a.gfx.ms/emoji_1F603.png" style="height: 19px; vertical-align: middle; width: 19px;" title="Smiling face with open mouth" />
My arm, I have noticed since my chest wall had become either dried out from chemo or wet (sorry I don't know how else to explain it) when it isn't dry, there was a problem. Dr Phillips referred me to the wound center at the hospital and I learned it isn't infected on the outside but could be if we don't get the "yellow" skin off of it. To get that off, after a shower (only every other day -hey they made the rule) I will spray it with a medicated spray and then wipe as much of the yellow looking skin off. Since I don't have much feeling it isn't bad, but when I do hit a nervy spot-OUCH and it makes me want to pass out! So right now out insurance has denied the bandages we need to help heal the wound. I called today to pay for some while everyone argues it out and they are $11 / bandage and I use 3-4 a day! That is fun! So I paid for 30 in hopes by the end of that, we will have the insurance agreeing to the purpose. Either way, this had caused my lymph nodes in the right arm want to help with the drainage but because 19 were removed during surgery, I'm having a real hard time. So I have learned several massages to help the fluid pass to the next set of lymph nodes I think in the lung area. But that may or may not help the swelling that has already been caused in my arm. My right upper arm is hard as a rock and is causing my right fingers to tingle. Such an uncomfortable feeling and very painful. Also I'm not interested in it getting much bigger considering my left arm looks like a tree twig. A twig and a branch aren't that great of a match!
Finally Monday, a thoracentesis has been scheduled to drain the fluid. This is the treatment that I have explained in the past being very uncomfortable. Last one they did give me valume and some drugs in my port right before and right after the procedure happened so I tolerated it better then before. So the plan is for me to again let the nurse know what I expect. After the test I will be required to stay in the hospital for 3 hours. Hour one a x-ray to check the lung and for me to sleep off all the drugs. Hour 2 is boring and I think I just ate pudding and stared at Facebook. The third hour a final x-ray to ensure the lung if back to normal and the hopefully home. The rest of the day is a bust as I can't do much. I'm tired and sore. So Wendy will plan to pick up the kids and stay with Ryan while Justin goes to soccer that night. Mom plans to join me for the long day at the hospital with me.
This blog post does sound like I'm low on happy information, which I am. I will save a happy post for Tuesday or Wednesday next week when hopefully this is all behind me and I have hopefully a little more energy (although radiation is known to wipe out energy) so let's see. For now I ask that your prayers focus on all tests and procedures to go smoothly. After everything is complete, my focus request is for increased energy and a recharge on my feelings of everything. I'm far from giving up, but I do see myself slipping into that thought that we are doing all of this to prolong my life- which we are, but I need to concentrate and focus on prayers and hope that we find the right one for me. The one that may not seem to be a fix, but for me is THE ONE. Is the AMBER drug that will a make science magazines, will make that nasty doctor I saw while Dr. Phillips was vacation and in the hospital shake his head in disgust at me for not letting him be the one to help me, for Ellen and Good Morning America to call to find out my next plans in life are. Just so much that I'm smiling like it has actually happened.
Okay it is now almost 4 am and I should try really hard to sleep through the last couple of hours of this movie. Ryan will be up soon and as much as I say Mommy didn't' sleep, he doesn't seem to care. I don't know why, but he doesn't. Justin….well he gets up in time to eat and head off to school, so a lunch needs made and oh his breakfast too!
Happy birthday to my dad this past Wednesday. We may or may not be having a surprised party hosted by Justin in dads basement tonight since Justin only has an half day of school today (Oh wait, no school lunch -Score!), he wanted to decorate the basement and make a cake to surprise Papa. Prayers for my Grandma Freeland who had been in the hospital since Sunday. They are having a hard time regulating her medicine to help her 93 year old body working. It is frustrating for all of her children and for her to try something one day and it work and the next day it doesn't work. So prayers that this is figured out. Also for the siblings of my mom. Including my mom, to travel back and forth to the hospital to be with her to keep her company and help them feel secure that the right decisions are being made.
Happy Friday!
Love,
Amber </pre>
Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-42720949567717090692014-09-10T14:46:00.000-07:002014-09-10T14:46:55.355-07:00Hanging In ThereWell my friends, it has been awhile and I have had some people reach out to make sure I am okay, which I truly appreciate the concern so I thought it was time to write an update on what is going on over here at the Naughton Plaza. <br />
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First on the cancer front, my lung filled with fluid once again and I had to have the horrible procedure that I had in the hospital. It is called a Thoracentesis. See I am broadening my horizon with medical terms-AWESOME! This time around I was more prepared and requested to have as much pain and nerve medicine as possible. They gave me Valume (IS this how it is spelled?) before the procedure and then some pain medicine through my port right before and during the procedure. I don't really remember anything....I was awake during the procedure and then slept for about an hour after. Not sure if that was how it was supposed to work or again if it is my goofy body not doing the right thing and being delayed in falling asleep. Either way, it was much more tolerable so I am thankful for that. After the procedure they do an X-ray right away and then one 3 hours later to ensure that your lung is drained and that the lung has moved back into position. Unfortunately mine decided it wanted to stay cuddled up with the left lung so this meant I had to return the Friday of Labor Day weekend to see if it had moved. If it did not move any, they discussed doing a surgery to manually move it. Wait, what? Surgery? Unplanned? Yeah, I was nervous about this. Not something I had on my schedule that week. So Friday I returned and received good and bad news. Good news was that the right lung moved a little so no need for surgery. However we learned that the lung ALREADY had fluid building up. Not the best news.<br />
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Last week I was having some pain on the chest wall. The skin is dry and when I apply the medicine prescribed it gets too moist. It is just a mess and looks like an infection waiting to happen. I called Tuesday after Labor Day and requested to see my Doctor and an appointment was scheduled for Thursday. All was good until Wednesday I woke up with a fever so I contacted my doctor and went in right away. Dr. Phillips examined the skin and did not see infection but thought there was a chance the infection was deeper than what she could see. So she prescribed a drug for infection and then discussed the lung procedure. We decided that doing a lung x-ray every other week would benefit us so we could see if or when a Thoracentesis was required. Dr. Phillips also requested that I see the wound center to have my skin looked at and cleaned up.<br />
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On Monday this week I took my first trip to the wound center. I had the best nurse practitioner Andrea. Since most of my skin is numb where they are cleaning, I feel I was a pretty good patient, but at times as she was cleaning my skin, it would hit some nerves and would hurt....YUCK! She did a good job and wants me back on Friday to ensure we are using the right bandaging. (At this time I need to keep the skin covered at all times) Once we know we have the right bandaging she will order and go through my insurance company to have the supplies sent to our home to clean and take care of the skin here and only follow up with her to ensure everything is going okay. Hopefully the skin will clear up fast. The good news was there really wasn't any infection, just need help to make the new skin grow.<br />
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So cancer is still lurking around here and maybe that is why I haven't updated. Not that I thought it would go away, but just that this update seems like a lot of appointments and a lot of negativity. I like to write about the bad but then follow with the good! So maybe that was it, or maybe it is just that I am so darn tired that the thought of typing makes me want to go into a coma. Speaking of, I am sleeping a lot. I try to find one thing to concentrate on during the day (thanks to my friend Jill, she has helped with this) Once I complete that I feel like I can take a nap or I can watch some mindless DVR'd shows. I just do not like to lay down all day. That is when I feel really sick, even though I hate to admit, this is really what I want to do. I am so TIRED!!! This is not fun at all and I am drained constantly of my energy. I watch my mom come in with groceries from doing our weekly trips to the store and I want to get sick. I see clean sheets and made beds and I know Wendy has been here to make the beds-Makes me breathless. I want to take back these tasks as sick as that sounds, I just can't right now. I am trying to save my energy for the kids at night to tell them to eat their dinner, stop attacking your brother, don't throw that, let me change your diaper, yes it is bedtime. All of this I still have under control so that feels great! I'm still a mom!<br />
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Around the house. Well Justin has started 2nd grade and loves it. He is bringing home perfect spelling tests and worksheets. His spelling and writing is looking better and he is doing more of his favorite this year - Math. So he seems to be one happy camper at school. He has a few kids in his class that were last year so that made the transition easier. He also has joined a soccer league. I don't know that mommy and daddy knew how much time we would spend on this and we are still trying to transition to 2 nights of practice and games on Saturday, Sunday and sometimes Monday. All of which may or may not be played at the school within walking distance from our house. So we will see. He has a pretty good team and enjoys it so we are trying to smile too!<br />
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Ryan, oh Ryan. He is 2 1/2. Whew! So he is busy as can be and asks why constantly. And I don't always know why! He goes to daycare on Monday and Tuesday and then is with my mom on Wednesday and Friday and with Wendy on Thursday. He is doing gymnastics with Wendy and a signing and ABC class with my mom. One of the days he is with my mom, I am going to try to attend the play date so I get more time with him, but our one on one time is limited because he doesn't stop moving and that isn't fair to him that Mommy needs to rest more than just 1 nap a day that he is trying so hard to get out of daily.<br />
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So all is well here in the Naughton house hold. It has been fun to have mom and dad 30 minutes away too. Even more fun to say "see you tomorrow" instead of "see you soon". Mom attends a lot of my appointments so Don doesn't have to miss work. I don't know if she could find that part time job right now dad because I'm keeping her pretty busy over here! She likes to be involved so she can fully understand what is going on and she is enjoying time with Ryan for now 2 days a week, which she knows she is not locked into-Why Ryan asks-because you are a wild man and day care has so graciously agreed to take you should mom decide it is too much. For now Wendy and mom know their roles and when and where they need to be somewhere. It is great that we have it all together and things are running smoothly. But we do appreciate your concern and your gracious offers to help with the kids and still know who you are so don't run too far, you just never know when we get in a bind. <br />
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I will try to update more often and I do appreciate your concern when I don't update. But I'm still working hard to get better and if I can't get better, I'm working hard to ensure I don't get worse.<br />
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Don't forget that if you live near and don't have plans on Sunday, October 5th, come join Amber's Prayer Warriors at the Making Strides Against Breast Cancer walk. $25 to register and kids are welcome!! Hope to see you there!<br />
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Love,<br />
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Amber<br />
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Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com1tag:blogger.com,1999:blog-6554619991793904973.post-56777106408969844672014-07-17T18:20:00.004-07:002014-07-17T18:20:33.722-07:00Home Sweet Home-Not all Sweet<span style="font-family: Arial, Helvetica, sans-serif;">Well, I am home! I have never been so happy to be home in my life. My hospital stay was not a vacation that I want to re-visit anytime soon. It started in the ER on Tuesday night where they tried to control my pain with an IV pain medication. The meds would work for a short period and then ware off. I was admitted after answering the same questions over and over. I was finally up in my room by bedtime. Again answered the same questions because the ER and the hospital do not communicate I guess. All the while, I could not get any pain medication until the on-call Dr. received all of the questions that I answered twice at this point. So all of us were pretty upset, me the most because the pain was getting worse and worse. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Wednesday I was supposed to have mapping / planning for my radiation treatments that were going to be done what I was originally told 1-2 weeks. Luckily the radiation department agreed to still do this and planned to come get me for this appointment. Before my appointment, Dr. McCall, the Radiation Oncologist came to visit and informed me that my Doctor was incorrect and the radiation was not going to be 1-2 weeks, but 5 weeks. This upset me, but I decided I should go ahead with the planning and decide later if I wanted to give up chemo for 5 weeks for my pain relief. So they wheeled me down for the mapping.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Insert here where our lives were changed: During mapping they do a CT scan to ensure the radiation is treated in the correct spots. During this I was in a lot of pain and Dr. McCall came in and asked if I have a problem sleeping or laying flat. The question didn't bother me because I do not lay flat a lot because I love pillows. She told me there was fluid around my right lung that was not there in April for my last scan. So from there I was taken to another location for an Iodine CT Scan. I thought this was it and in the mean time I had talked to the Oncologist on call and Dr. McCall. We all knew what this meant: The cancer had set up shop in my right lung. I was finally back to my quiet room waiting for Don and mom to arrive. I found myself staring out the window in disbelief. How could this be happening. I did not have any shortness of breath, the doctors listen to my lungs at every appointment and did several times even during this visit and everyone said they sounded clear. I was devastated. I thought this was as bad as it was going to get but it got worse. The nurse came to my room and transported Don and I to another room for a lung aspiration. This is where they place a tube in your back between your ribs and drain the fluid. While the skin was numb, I could feel the tube go through my skin and I knew what was going on. This test was the one that made it all real to me. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I again was returned to my safe place - my room to rest and see mom, dad and Wendy. I was very groggy from pain medicine but also just in a fog. What does this mean. How could this have been missed. Was this the cause of the pain. Just several things running through my mind. All I wanted was to come home. That feeling I experienced when I was originally diagnosed and I knew that if I were home, they couldn't hurt me. They couldn't do more tests and discover more things that I could not handle at this time. I was adamant with the Oncologist that I wanted to be at home, I did not want to be there. They had me stay last night to ensure that my pain medications were at the right level for future. Luckily it was.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Today the Oncologist came to see me. Although pathology isn't back yet, we both know that the cancer is in the lung. I told him at this time I do not want anymore information. I just need final confirmation that it is cancer, I don't need size or if there is more than one nodule in the lung. Next steps are I will be changing doctors more than likely to one in the city that can better manage my disease. I will meet with her next Wednesday. More than likely my treatment will consist of chemo.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">While this is bad news, we do have the pain somewhat managed. Still with pain medication, but some of this pain was probably caused from my lung being filled with fluid. I again did not know it was filled due to not having symptoms of shortness of breath, but they do believe that as time goes on the pain will subside more in my neck, shoulder and back from the drainage. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Prayers right now that we can find the right chemo to remove the cancer from my lung, but if we can't to control it. This is not good news and frightens me and everyone else deeply. It is scary to think of cancer invading my lungs and making it impossible to breath. So prayers also for our strength and courage and for the new doctors to find something to make this all better. I can not be broken like this. Please keep us all in your thoughts and prayers and we process this news.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Love, </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Amber</span>Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com4tag:blogger.com,1999:blog-6554619991793904973.post-30662184981260613682014-07-15T08:23:00.001-07:002014-07-15T08:23:34.865-07:00Sorry This is a Long OneGood Morning! These past few weeks have been busy weeks. I wish I could say busy as in so much fun that I have not had time to think or write about cancer, but that is not entirely true. Somewhat-but not all why I have not updated. <br />
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To start with the good news! Mom is here! She arrived on July 3rd. Our family was at the lake, but dad and Whitney were here to greet her and welcome her! Dad got the job! He actually started today. He is a bit nervous being the new kid, but Justin let him know he will do fine making friends and reminded him it is just like going to camp where you don't know anyone. Whitney got the job! Whitney started her job yesterday out in Washington DC. She won't be working out there, but they do the first weeks training out there. She too was nervous, but after talking to her last night, I really can hear the excitement in her voice. Seems like this company will be a good fit for her. Don started a new job! Don has been questioning leaving his company for awhile and when he received an offer from a competing company, he decided it was not something he could pass up. He had been at his previous company almost 10 years. It was a great time for him to make a change. Mom and dad close on their house mid August. Most know that Dad, Whitney and I picked out the house and dad put an offer on it and got it without mom seeing it. That took some big time trust! Well, luckily mom saw it last week and loved it so we did good! They will close in August and I think are excited to get settled with their own stuff again. I will miss them here but know like everyone else, they are a phone call away should we need something. One more big thing (I'm sure I have forgotten some), but Jess and her family were here last week. We had an awesome week. A lot of visiting, time in the cars, swimming, baseball, etc. Justin loves having all of these boys in the house since of course all he wants to do every night is play a base ball game or soccer game. So it was great to have more boys who are just as anxious and excited to get outside and be competitive. We did some stuff around here and also took them up to the lake for 2 days. It was a great get away with great weather! We did a lot of boating and the kids were able to do some tubing on the lake since it was so calm with no one really being there during the week.<br />
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Cancer front / yucky parts! Ever since my doctor has informed me that one of my levels was rising, I have been very anxious and very in tune with my body and realize very much so that the chemo I was on was not working. I also was having pain issues that I felt were getting out of control again. Sleepless nights, not being able to get comfortable even in a seating position, shortness of breath because the pain was so unbearable. You name it, I had it along with pain that is still localized in the right chest area. I e-mailed Dr. Phillips a few weeks ago and let her know that I would be there that week for chemo and I would do as she asked and finish that cycle but I wanted a new plan and I needed an increase in pain meds. When she didn't respond, I called and found out she was on vacation. Luckily one of her associates could help with the pain medicine situation, but could not help with the plan after this chemo cycle. So the Wednesday of the 4th, I e-mailed Dr. Phillips again and asked her to have a plan for me when we meet on July 11th. I also asked her to find a new pain management plan instead of just increasing my doses of current meds since they were not working. I think you reading this can tell I am getting a bit irritated at the plan my doctor has put in place for me. It is tough though to go in and address these things. I get she is not God and can't fix all of my problems, but I do believe that she has the power to fix my pain issues so that I can get that behind me and use all of my strength fighting cancer and or being with my family. Upping my doses on meds that make me sleepy makes it very difficult to do anything. I can't drive at times, I sleep so much that I don't see my kids, husband or mom and dad. I don't want to live this way. So I needed to address this with her, but I guess my concern was coming off upset. I picture if I were the doctor and a patient came at me upset, I would think the patient is upset because they can't rid themselves of cancer and they need someone to be mad at so they are mad at the doctor. That is not the case for me. I am happy with her so long as I feel she is doing everything in her power to treat me. I know there are things that are out of her hands. For instance, if a treatment doesn't work, I get it. It sucks, but it is not her fault. But again, when I'm on the phone weekly asking for pain meds to be changed, I think there is more she could be doing.<br />
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So after this email I received a response front he trial coordinator in regards to a trial I may qualify for in Boston. We were at the lake at this point so I asked her to send me an attachment with the trial information. When I received it, it stated it was a Phase 1 trial. This means it is the first time being treated on humans. I get that trials have to start somewhere, but in my condition, I do not feel comfortable starting in a phase 1 trial especially in Boston. I panicked and e-mailed the coordinator back explaining my concern and then asked a tough question: are you giving me this trial because I am out of approved drugs to use to fight this. She responded that this is not the case and to call her. So I spent some time on the phone with Kristin and she explained that they were thinking a trial requiring travel might be something I should do right now. It was going to be a drug with very little toxicity and as we continue with the drugs here, they are only going to get harder and their opinion is to travel while I can and then do the harder drugs as my body starts to wear out and I need to be around my kids. I told her I would call Boston to get more information, but yeah right!!! My body will not give up to these tougher drugs! So I contacted Boston and learned that the trial is an 8 week cycle. Basically you are seeing a doctor or getting chemo throughout the 8 week time so I would need to live there and if it worked, plan to stay to start another 8 week cycle. The trial is currently full. He anticipated there being an opening in 5-6 weeks but if you have to have a 3 week wash out period from chemo. So I asked if I had started a chemo, would they wait the 3 weeks for me to go off of treatment and he said it would depend if there were others waiting and that could start right away. Don and I have decided to not rule this out, but leave it in God's hands. If it is meant to be, it will happen. In the mean time, move on move on! The rest of our trip for the 4th was uneventful.<br />
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Last week we went up with Jessica and family on Wednesday afternoon and stayed through Friday. On Thursday while at the lake, I came in from boating with Ryan and mom to lay Ryan and I down for a nap. During this time, my pain intensified to the point where I was crying and having a hard time getting comfortable. I took my pain meds but they did not work. Whitney, Jess and mom took turns massaging my back, bringing me ice packs while Don brought in and took out at my request my bio mat. It was a lot of work on them and what makes it so much worse is I hate them seeing me like this. They can not fix it but try so hard. I don't want to tell them to stop because a massage calms me down, but really they can't take the pain away like they want. So it almost makes it worse for me. I don't know actually what is worse: being in pain, or being in their position. Both are so frustrating! <br />
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Friday Don and I headed to see Dr. Phillips in the afternoon. I first saw the nurse and when she asked how I was tolerating chemo I started crying (I wanted to hold back as much as possible) I told her this drug was not working and I had planned to talk to Dr. Phillips about it. She is so sweet and reminded me that I have such a crowd of fans at the hospital and they do not want to see me upset or giving up. I let her know there is no giving up, just sad and frustrated. But it feels so good to know that everyone there is behind me! When we saw Dr. Phillips she was filled with ideas on pain management. She decided that pain needed to be bumped up to first priority and cancer being 2nd for now. We decided that I will do some palliative radiation (Palliative means not cancer fighting but helps with quality of life) She had my radiation doctor, Dr. McCall come see me and she looked at the area and felt 5-10 treatments could help stop the nerve endings from continuing to bother me. Next she called a doctor for pain management. She told me he is very hard to get in to so to keep my phone by me because they would be calling to schedule an appointment. Finally she wants me to visit the wound center because some of my skin on the chest wall is cracking from being dried out from the chemo. It is so much so in areas that when I shower, the bad skin falls off and then it bleeds. I have done a great job taking care of the area, but one bad infection could hurt me so it is time to see the wound center. <br />
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Dr. Phillips then discussed the cancer with Don and I. I let her know my concern with rising level and she explained to me she goes more by physical exam than a blood test that could fluctuate by time of day, something I ate, etc. So she feels that since I do not have symptoms else where, my other blood work looks good, my physical exams always go over well, that we need to fix the pain these next couple of weeks and then get back on chemo. So prayers for this cancer to just stop would be great!<br />
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I met with the pain Doctor yesterday who is actually an anesthesiologist. He examined me and felt that putting nerve blockers in would block some of the nerves. He said we would try this for a couple of weeks and if it doesn't work, we could to a nerve ablation which is where they go in and actually burn the nerve endings. None of this is permanent so this will be added appointments as the pain comes back. So yesterday we started with 4 nerve blockers. These were done under my right armpit (On top of all the red inflammation -YES). He had to turn on the x-ray because they are placed around the ribs. I was asked to lay on my left side with my arms all goofy so they could get to this area. I was already uncomfortable because of the way my arms were it was hurting my chest wall, but I thought manage through it, this is going to take the pain away. Next was the insertion of the blockers. I cried like a baby. It was the most painful thing ever. I do feel I have a high tolerance of pain, but this was horrible. The entire time I kept thinking he mentioned having to come back for more, I can't do this. When he completed he apologized and explained that until he got in there did he realize how much inflammation there was so next time he would do a twilight sedation. Thank Goodness!<br />
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If you are still hanging in on this long blog, Mom and I left that appointment and headed to the city to meet with Father Rookie. I was referred to him by one of Justin's classmates mothers. He is a healing priest and used to travel the world helping others. We arrived early so we were invited to look at the Basilica which was beautiful. Then we went to a room big enough for 5 people and we did the healing service. The service was special. After prayer, he sprinkled us with holy water and anointed us with holy oil. When the service ended we talked to Father Rookie some in regards to his travel. This is when we learned he was 98 years old! What a special man with such a talent. I am so happy I was referred to him and that he prayed over me and my mom. It will be something we will always remember and cherish. <br />
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Tomorrow I have radiation mapping, which is where I lay on a table for a few hours while the radiation techs mark me up to make sure they are radiating the right areas. Once this is done a mold is made for me to use every day for radiation and I can't remember from last time, but the treatment starts fairly quickly from there. Friday I will see the wound specialist and then that brings the weekends which consist of Nascar down at the track for Justin and Don. I am invited but it will be a day before decision. I am not sure I can sit in the chairs that long. <br />
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Thank you for taking the time to read this, I know there was a lot of information. I should update more often so it doesn't get this long. Please continue the prayers for my pain to be taken away, the cancer to go away but if not go away STAY while we work on these other areas.<br />
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Love,<br />
AmberAnonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com5tag:blogger.com,1999:blog-6554619991793904973.post-2866889647654703932014-06-19T14:09:00.000-07:002014-06-19T14:09:46.961-07:002 Year Cancerversary<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">While reading through last years posts to reflect on my 2 year cancerversary, I have mixed emotions. So like I love to do, I will put them out there in writing to share with you and also as I say, to cry in my corner while I write and you can cry in yours (I'm hoping that isn't the angel this update is going to go but I just type it-don't shoot the messenger:))) </span></span></span></pre>
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<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;"> Last year I was filled with joy and curiosity as my career with Porsche came to an end and Don and I had all intentions for me to join the work force again after taking the summer off to breath and catch up on life. I enjoyed my summer so much- exercising daily, reading about eating the right foods and using my juicer, playing with the kids, visiting friends, traveling, doing our first family vacation....learning to let go of the side after the huge tidal wave tried to take me down one nasty June day in 2012. </span></span></span></pre>
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<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;"> August arrives and I find several lumps (mosquito bite size) on my right breast. I see a general doctor because I'm done with cancer and besides 6 month follow ups, I was cleared to my regular doctor. My general doctor takes a look and says it is mosquito bites and to use a cortisone cream and sends me on my way. Not before though I realized she didn't pass the sniff test-she asked when my next mammogram is. I get she is not an oncologist or breast surgeon, but most of you are probably scratching your heads (if you aren't, then use this as a teaching lesson) and saying why would you get a mammogram when you had all tissue removed with a mastectomy? So in true Amber fashion, I tell Don, my parents and Wendy not to worry, it is nothing and I just want to see my breast surgeon for a second opinion. I truly WAS NOT worried. August 23rd proved me wrong yet again and turned our world upside down a second time.
I remember Dr. Bethke's resident examining me and saying "yeah I don't think it is cancer but let's have Dr. Bethke take a look". If you are going into the field of becoming a Doctor or nurse, please do not share your opinion with a patient -share it with the doctor….Anyways, I sat there waiting for Dr. Bethke and was kind of doing the happy dance because of the resident and continued to plan our approaching Disney trip. Dr Bethke comes in and is reserved as it is, he wants a biopsy because of the triple negative....then he did the standard "feel for enlarged lymph nodes" armpits quick exam-seemed fine, collar bone-perplexed look and then over to the counter in the exam room I look over his shoulder and see him use a red marker and place am "x" on a picture of a females body around the right collar bone. I knew it, he didn't have to say a word! Next came the words I have heard before "Amber please take a seat"....I quickly move from the exam table to the chair and say to him, " when will I learn I can't come to appointments like these alone?" Remember I was diagnosed alone too because as much as my instinct works to get second third and fourth opinions, I guess I'm off on the going to these second third and fourth opinions on my own. </span></span></span></pre>
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<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;"> The next few weeks were a whirlwind because what I knew about this recurrence a lot did not. I had to explain a lot and make decisions a lot based off of the recurrence. A recurrence automatically moves you to a stage 4 cancer patient. I argued my points, which I thought were valid: the lymph node location and chest wall being the only impacted area would have made me a stage 3c if this were my first rodeo, but if you have done chemo and have a recurrence, you are looking at stage 4. Our decisions ranged from whether to go to Disney or not (2 weeks away from the recurrence diagnoses), should I go back to work ( had an interview prior to learning of recurrence so do I work and be normal or enjoy what time I have with my family and kids) accept social security as a form of income, letting Justin in on the recurrence when Justin was already having a hard time adjusting to first grade. All of these were just the initial decisions. Later came explaining to family and friends what stage 4 metastatic breast cancer means. Trying to stay positive for them while I educated them so they didn't get scared. Trying to stay positive all the while knowing that the double whammy of having triple negative breast cancer along with a grade 3 tumor (growth factors: 1 is slow growing and 3 is the highest so take it from there). Learning and explaining to others the use of chemo for a metastatic breast cancer patient is not finding the right chemo to rid the body of cancer, it is to find the right chemo to stay ahead of the cancer so it does not spread further than it already has. I would like to say looking back that Don and I did our best with our families and held things together as well as we could without looking naive at our odds and taking the news and trying to make the best of it, but I know we aren't perfect and nor would any of you if you were handed this bag of garbage or if you are living with this bag of garbage. </span></span></span></pre>
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<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;"> Throughout this past year, I have tried my best to live my life as wisely as possible. That included making decisions with the free time I had and who to spend it with. I didn't want negativity. I wanted people in my life that cared to understand my diagnoses. Cared about my family's well being and stepped in and did what they could to protect us. I didn't want to be a burden to others, and I understand that some might have a fear of what is or isn't appropriate to say to one going through this. Especially when you add in there our age, most of my friends and family have not had to deal with this type of news at this stage in our life. But I did decide that if you can't be there when I'm at my lowest, I certainly don't want you there at the grand finale that I hope someday to finally get -where we learn I beat the odds. </span></span></span></pre>
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<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">I love when a friend or family member comes to me for an ear to listen. I hate when they say "I hate to burden you with this because it is nothing compared to what you are dealing with." You see it is something. My something </span></span></span><span style="color: #444444; font-family: Arial, Helvetica, sans-serif; font-size: 15px; line-height: 21px; white-space: normal;">may not have answers, but everyone has their battles, so with that I say, I do genuinely care and want to understand your current struggle. At times I feel that I am a better ear than others or than I used to be. I will correct someone if I think it is a fruitless argument. I will play the devils advocate to help a friend understand where the other person is coming from. I guess my point is, I feel that going through cancer and cutting out some negativity has made me a better person and with me being a better person, I feel I have rubbed some of that off on others. </span></pre>
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I'm not preaching that I know I do not have this perfect life and never complain about things or don't make bad calls. Don and I are constantly trying to remember to let go of the stressors or things that get to us that we can not control. We sometimes find ourselves on separate pages and not communicating or understanding each others points. This is difficult because like you hear constantly: cancer will make or break a family. I refuse to let it break us. We are stronger than cancer. To make it though, we have to fight harder when we are completely worn to the bone tired. Sad to the point where tears won't flow, but sometimes happier at the smallest thing that in our old normal life, we may have looked past because we were too busy to see it. But most of all, we are constantly reminding one another of the things that are out of our control (insurance, cancer, scans, sudden deaths in the family, etc)</span></span></span></pre>
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<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">This past year, I also joined a church. Don and I attended every once in awhile to his church growing up and we love Pastor Don, but we needed something closer. So Whitney and I made some rounds over Christmas and found the perfect church on of all nights but Midnight Mass. The music had me at hello! From organs to bells to piano to flute....beautiful! The following Sunday being greeted by Pastor Dave and him recognizing that we were returning guests helped even more. But most of all is the fact that Peace Lutheran Church does a healing service once a quarter (I believe don't quote me) at their Saturday night service. They ask if you or someone is in need of prayers you go up and announce to the Pastor your healing request and they pray right there with you. When I attended this service in January, I was only going here for a few weeks, I had hair due to the current treatment not robbing me of that. I whispered to Pastor Dave what was going on and that I needed prayers for an upcoming scan and his jaw almost hit the floor. I think this shocked him! Ever since then, Pastor Dave has followed my blog, added me to a prayer list at church and checks on me and provides me with projects to keep me busy! It is like he got me right away. He realized I wanted to join a church that felt welcoming and was right down the road. In my opinion, he kind of just took me in under his wing and has made me feel closer to God than I have in a long time. Attending his service and listening to his sermon I leave thinking "thank you, I needed that, it was written for me". At times this gives me a refreshed look at life and I change my ways. Other times I think how well off I am when you hear of others who are walking their struggles alone. So church was also added to my year and I love it! </span></span></span></pre>
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<pre style="background-color: white;"><span style="font-family: Arial, Helvetica, sans-serif;"><span style="color: #444444;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">There are many other things we have accomplished between my first and second cancerversary, but I don't want this to be a book, just a blog…..In January, learning that my chemo pill had stopped working, mom and dad were here with me for those results. That Sunday I took them to the airport and I was sad and so were they. We learned that I was invincible and that I wasn't going to walk away with just a few scrapes and bruises and that my fight was going to continue to get harder and harder. Two days after they were home mom called me from work and told me they had talked to a realtor and pending the house selling, they were moving up. I wanted so badly to kick and scream and tell them not to do that for me, but my life was crumbling before my eyes. I knew from previous experience, chemo was going to fatigue me and I was going to need more help with the kids. I knew with the cancer moving on us was just another step closer to the end prognosis-I'm still not able to see the end of the road, but know it will someday come-for all of us, but mine is maybe just a little more clear than yours. So with that, I want my mommy and daddy! I want them around to pal around with. I want them to come here or us go there and hang out on a weekend. Have sleep overs with the kids, have them get to Doctor appointments with me to help them fully understand all of this so I don't always have to be the messenger. So the house went up and a day later it went off the market because it was purchased- is this not a sign that they made the right decision? I know it was a HUGE decision. Being close to retirement but needing benefits, leaving 2 jobs that they had security with. But who would not do that for their daughter or son?! I was thrilled and even more thrilled that I didn't have to make the request that they and God made the decision and God is walking them through all of the remaining steps along the way. Dad is here and mom will drive up after July 1st. They have a verbal sale agreement on a home that is gorgeous, but as of right now, not the actual contract yet. Dad has had a couple promising interviews with some great companies and hopefully within the next </span></span></span><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">couple of weeks he will be back out there working. He asks to save your prayers for something else, but I do request prayers for this.</span></span></pre>
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<pre style="background-color: white;"><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">On the cancer front for this week, I had chemo yesterday and received both drugs. This will be my first full round of receiving 2 drugs the first week, 1 drug next week and 2 drugs on week 3. I did learn that my Cancer Antigen number has increased significantly - this is a blood test that is done to kind of gauge if the chemo is working and killing off the cancer. It is done once a month and from last month, it did spike. Dr. Phillips is saying she does not use this solely in making decisions on moving to another drug. And my thought is consideri</span></span><span style="color: #444444; font-family: Arial, Helvetica, sans-serif; font-size: 15px; line-height: 21px; text-align: center; white-space: normal;">ng I didn't get the right </span>meds<span style="color: #444444; font-family: Arial, Helvetica, sans-serif; font-size: 15px; line-height: 21px; text-align: center; white-space: normal;"> last month due to the insurance and hospital mishap, maybe it rose due to that and then previously being on a chemo that didn't work. So prayers please - this has to be the drug (if not we aren't done) and I need this number to go down. I also am asked for a monthly urine sample because one of the drugs can cause you to have protein in your urine. While I don't have that, they did find white blood cells in my urine so this hopefully means an infection. So adding another prescription to my night stand! </span></pre>
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<pre style="background-color: white;"><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">So in closing, I ask for prayers for my numbers to decrease, dad to get a job and for me to be typing about my third cancerversary next year.</span></span></pre>
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<pre style="background-color: white;"><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">Love Always, </span></span></pre>
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<pre style="background-color: white;"><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"><span style="font-size: 15px; line-height: 21px; white-space: normal;">Amber</span></span></pre>
Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-44294753441737437562014-06-08T15:10:00.002-07:002014-06-08T15:11:57.802-07:00Sunday Funday<span style="font-family: Arial, Helvetica, sans-serif;">Happy Sunday! Not a lot to report. We have had a nice relaxing weekend at home. Friday after Justin"s soccer game Don and I went out to a friends family party. As much as I had to talk myself into going, it was nice to get out. Saturday was more soccer and then fun in the backyard sprinkler and basketball. Today was more outside creative fun which I hope is a sign of how the summer will go. Summer break officially starts at noon tomorrow! While Justin is excited, I am not quite sure I am....I just want him to be busy and have fun and I"m not always up for much these days. We do have him signed up for some camps so that will help. In fact the first one is a week from tomorrow. It is called Camp Hope. It is a camp for children who have a family member going through cancer. I have talked to one of the social workers and she said they do normal camp activities but then do break out sessions which include yoga, meditation and other ways for kids to handle the situation. I am hoping he meets some friends that will last a life time and that he will learn that while it is scary, he isn't </span><span style="font-family: Arial, Helvetica, sans-serif;"> alone. So wish us luck! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">On the cancer front I am hanging in there. My treatment on Wednesday was uneventful, which I like. I did learn that my red blood cell count was just hanging out low, so since I was feeling sluggish, Dr. Phillips decided we would do a transfusion. So I went back on Thursday for 1 unit of blood. Usually I get 2 which takes close to 5 hours. With the 2 units, because of the Benadryl, I usually sleep through the first half and watch TV the second half. Well, they gave me the Benadryl and I was out. Out so much that I guess there was a fire alarm going off for a good 20 minutes and I didn't even stir....Good thing it wasn't real! The nurse basically woke me up 2 hours later and told me I could leave. I was a little upset that she disrupted my nap, but home is always better than the hospital. It did perk me up some, but again with the increase in pain meds, I find myself napping a lot. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This week will be my off week for chemo. I am ready to get back at it already as I am not a fan of off weeks. Plus because of the insurance issue, I really didn't</span><span style="font-family: Arial, Helvetica, sans-serif;"> have the right concoction this first round. So my pain is still pretty constant and the same. I was hoping it would decrease by now....So pray that I get through this off week and the pain doesn't get worse and nothing new pops up. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">On my down time I am having a good time hanging with my dad and Whitney. I hope they find work soon, but I will miss them. We are also spending time looking at houses online and in person. Ryan is still going to daycare twice a week and as much as he cries when we drop him off, he has so much fun! Mom will be moving up after July 1st just in time for Jessica and her family to get here for a week. I know them being here will keep my spirits up. I just want my energy level to be up too so I can do fun things with them all. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Well, it is almost time for dinner and a movie. Even with a day left of school, it seems a good summer routine has started.....evening grilling and movies. Nothing like it. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Enjoy your week ad pray for me and everyone else going through a hard time.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Love,</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Amber </span>Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-59274420666727091572014-05-30T08:30:00.000-07:002014-05-30T08:31:04.924-07:00New Meds All AroundThank you for those that have called or texted to check on me. I am as a matter of fact doing okay. Fell off the grid for a bit, but hopefully getting back on track. Like the saying "I fell off the wagon, but I'm back on." That is me. I didn't see it coming either. For as high as Don and I still were from the benefit, I really didn't see a bad time coming for awhile, but like cancer is unpredictable, so is my life I guess.<br />
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Last week I was to start my new chemo of Avistan and Abraxane. I knew I needed my fix as my pain was getting worse and worse. That is the one true sign that I am going by right now to say if the chemo is working since I (with my doctors okay) decided a scan is not something I want to go through at this time. So I was anxiously awaiting chemo and in the mean time was taking more pain meds than I wish to even discuss just to keep me going. I ranted a bit about it on Facebook, but because people abuse the use of pain pills, you unfortunately can not have your doctor call you in something any stronger than Norco. It has to be a paper prescription. So along with chemo I was anxiously awaiting seeing Dr. Phillips to get a prescription for a stronger pain medication. When I arrived at chemo on Wednesday, it was taking longer than usual to get my drugs. Finally Dr. Phillips came to chat about my pain and prescribed me a stronger pain medication. This was when I learned that my insurance had declined Avistan as a drug for them to give me. I was VERY upset and because the pain was so bad, I was not sleeping much so this was not the news I wanted to hear. The hospital had almost 3 weeks to work with my insurance to get this approved. Of course no one is going to take blame between the insurance and the hospital and it really didn't matter, all I knew was not getting a drug was not going to help the cancer or pain situation. I even asked if they could put it on my bill, but that was when I learned that this greedy drug manufacturer was going to charge $18,000 for 1 (ONE) treatment. I will take back the greedy comment if it works, but this is partially what is wrong with the cancer front….The astronomical amounts that the companies and the doctors can charge when you are 100% at their mercy. It is just so sad. Not to mention (again) not being able to get a darn pain medicine over the phone when I have no hair and would have gladly shown the pharmacy, police, FDA, whomever how much pain I was in to show I was not selling, sniffing or putting in someone Else's drink. Just doesn't make sense and is so unfair given my circumstances. <br />
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Okay I'm off my soap box….So Wednesday I received one drug and was sent on my way. Whitney graciously agreed to turn in my prescription to Walgreens that I have used for the past 2 years. We go home and an hour later Walgreens calls and says that they do not carry the number of pills I needed, but that they had contacted another Walgreens in the area and they do. I say great, so will they fill it? Nope, you will need to come here to pick up the prescription and provide an ID that matches who is on the prescription and take it to the other location. I am off my soap box, but just imagine what was going through my mind. So I do this and take to the next Walgreens only to be told, I must wait their hour to fill the prescription. Even though they are the same company as the one down the street, even though these are pills and have to be laying around in a locked room I'm assuming, I had to wait the hour….Again I'm breathing when I say I'm off my soap box, but cancer pain doesn't go away while you guys go through your silly formalities. So off I went for a milkshake and a stop at Walmart. Why not feed my pain with more pain of going to Walmart….<br />
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Home Wednesday night and I start my meds and I'm loving them. Unfortunately I woke up Thursday and had a very bad chemo hangover and was tired. I didn't know if I should contribute it to the new chemo, the new pain meds or my levels sinking into the tank. So I was left to just take medicine and sleep it off. I woke up Friday and mom had arrived but was feeling about the same. We were heading to Don and Wendy's lake house that evening for Memorial day weekend. Of course we left when the rest of Chicago was leaving and I took my pain medicine as scheduled but my pain started increasing rather than going away. It got so bad and I was so tense that my back cramped up and my toes were stuck curled up. I was crying hysterically so we turned around. This scared me so much. I am not a weeny in my opinion. I feel like I push myself more than some that have not gone through something nearly as close to what I have. So this was very unusual for me. Because it was after hours, I paged the Doctor on call. She advised me to take my original pain meds on top of my new meds and instructed if it was not gone in an hour, I was to go to the ER to get an IV of pain meds and (WAIT FOR IT) a prescription for a new pain medicine since they could not call in something different over the phone. So I did this and when we got home, Whitney massaged my back to get some of the tension out and eventually I relaxed enough to allow the pain medicine to work.<br />
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Saturday Don took the kids up to the lake and Whitney stayed home with me to watch over me since I was scared to death that I was going to over dose with the high amounts of pain meds the on call doctor wanted me to take over the weekend to stay pain free. Mom and dad had gone to visit their mothers. The quietness of the house was awesome. I did hallucinate one time that I recall and to me it is funny, but I would prefer not to do that again. Sunday was much of the same with relaxation add in a massage which completely helped my back and neck to feel better from being so tense. I have signed up for monthly massages just for that and to keep me in check. Something that used to be a luxury item for me has turned into a necessity.<br />
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Wednesday of this week I went back to the doctor and saw Dr. Phillips because it was decided with the on call Doctor from Friday night that I needed more of a long acting pain medicine rather than one that I need to take every 4 hours. So Dr. Phillips and I discussed and she completely agreed. She also hopes it will take away some of my anxiety. I do get anxious around the time of re-dosing because the pain is coming back but I try to make the 4 hour mark and not do them earlier. (I'm such a good patient) So she has put me on a 12 hour pill that I take 2 times a day. So far it has gone okay. I'm still needing to take some norco for small amounts of break through pain. It didn't help that when I went back Wednesday evening for chemo, even though I was not due for medicine, after leaving chemo I had a pain attack just like last Friday. Completely tense, couldn't find anything to help relieve my pain. So why they happen every so often can't be explained. I don't like that because I feel like I'm on guard at all times and scared it will happen again. I did receive both chemos on Thursday as the insurance decided it was necessary to cover the drug. (Applause) So far I feel good. I'm tired, but that again could be due to the pain meds, my low red blood cells (Dr. orders that I will need a transfusion probably by next week) or the chemo. All I know is I am getting the best help around here with dad and Whitney. My laundry is done, the kitchen is kept clean, dinners are prepared and the kids are shuttled around. I feel silly, but if it helps me regain my energy and have good times with the kids, that is what is important. When they move out and get jobs, I may be in trouble because I may forget how to do all of these things:) But they are awesome!<br />
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Please pray that this new chemo is doing its thing. Pray that my pain medicine will finally work to keep me out of pain. Pray that dad and Whitney find work. For dad so mom can get up here as we all miss her so much. For Whitney so she can begin her life as a big girl. Both have things in the works so I think your previous prayers and future prayers will get them to where they need to be! Oh and prayers that the house next door or across the street goes up for sale so my parents can buy it…..Kidding totally kidding! They will find something close so they are there when we need them. Just like Don and Wendy. <br />
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Love to all! Have a great weekend. <br />
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AmberAnonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com1tag:blogger.com,1999:blog-6554619991793904973.post-31158421279974072142014-05-16T15:03:00.000-07:002014-05-16T15:04:37.352-07:00Home Sweet Home<span style="font-family: Arial, Helvetica, sans-serif;">Well, it is official, Whitney Garrison has graduated from University of North Carolina Asheville. We had a great weekend away in the mountains and seeing some good spots in Asheville before Whitney moved. Don came home on Sunday morning and I stayed another day to celebrate mothers day with my mom and drive the moving truck with Whitney's stuff back up on Monday with dad. Dad and I made the most of the 10 hour drive home. I can not complain about the drive one bit. Although I did not drive so he may see things differently. I was able to get a couple naps in and make a pit stop in Columbus IN to see my Uncle Rich and aunt Tam's "new" house. They have lived there for 6 years so I guess what may not be new to them, but new to me. Beautiful home on the lake. They surprised dad and I with a baby! Yes, a baby….my cousin Jill was there with her daughter Quinn who is 2 months. Beautiful surprise! It was sad to learn at the benefit that my aunt Tam's father was diagnosed with cancer. We received an update on him and it seems he is handling his chemo like a champ! So good to hear. Cancer at any age does not come welcoming. So do me a favor and please add my aunt Tam, her father and her family to your prayers.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">While away, Don and I learned that his Uncle Ron passed away. This was sad news to learn because we just saw him at the benefit volunteering. He has 3 grown children and 4 grandchildren. His services were held Tuesday and Wednesday. It was a beautiful service. So another prayer request for the Pondelicek family. Especially Ronnie Jr and Kathy, Brian, Trish, Sean and Molly and Adam, Kristi, Jeremy and Zoey. And also Uncle Ron's brothers and sisters and mom. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">On the cancer front, this is my off week. Last week I received my chemo but also spoke to Dr. Phillips. I could tell my nagging pain was coming back in between my regular pain pill time. It was becoming worse and worse and I was also noticing some new red spots on my chest wall. This told me that the chemo I currently am on was probably no longer working. So I made the brave decision to call out the cancer this time rather than it calling me out. What I mean by that is I was scheduled to have a repeat PET scan to see if this drug was working before moving on. But after the uplifting benefit, I decided I was not going to let a chemo regimen that decided to fail bring me down by getting a scan and learning of a possible new location that the cancer had set up shop. Rather I asked Dr. Phillips if we could just move on without a scan. See my chemo treatment does not change whether the cancer stays put or travels to an organ or new nodes so my new opinion is, what I don't know can't hurt me. I know to some this sounds like a small victory, but for me, it was huge. Hearing we have to move on makes you feel like things are out of your control. For me to make the decision and basically come to terms with it rather than being told by someone else, is my small way to feel in control and to feel in control to me meant not losing any of my high from the weekend of the benefit. So there you go! I also feel that sometimes knowing or hearing something makes me anxious and that feeling is hard to shake. For example, when I fell playing soccer a few weeks back, I fell on my hip that has a spot that has not been ruled as cancer but has also not been ruled out. So I limped for a week and told myself that this was it, it probably is the cancer blah blah blah. Well, a week later, my hip does not hurt and I am not limping. See? See what a scan does to me? I just would rather not know right now since my treatment plan stays the same. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So new chemo starts next Wednesday. I will be doing 2 drugs for 3 weeks and the 4th week off. Week 1 I receive both drugs. Week 2 I receive 1 drug and week 3 I receive both drugs again and week 4 is a week of rest. I am told I should be able to tolerate these drugs about the same as the other drugs. No new side effects that seem too scary for me. The drugs are called Avistan and Abraxane. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So wish us luck! Have a great weekend!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Amber</span><br />
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Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-6224891249781214412014-05-06T13:03:00.000-07:002014-05-06T13:55:24.199-07:00Cancer Can Kiss It<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiolRt8wb8u2MiO9xcQKdH-MmB586P6DJmTECYDBmLjgd-dYro8j_D54D1w0GwIKV8grQOD142KbgeZh0q_RrT3qJI_QOQo6BUqIgqfseTLLQT6lz5VSGMPA0OVArNs76jkLmOLbA9Ur9g/s1600/IMG_3784.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiolRt8wb8u2MiO9xcQKdH-MmB586P6DJmTECYDBmLjgd-dYro8j_D54D1w0GwIKV8grQOD142KbgeZh0q_RrT3qJI_QOQo6BUqIgqfseTLLQT6lz5VSGMPA0OVArNs76jkLmOLbA9Ur9g/s1600/IMG_3784.JPG" height="320" width="213" /></a><span style="font-family: Arial, Helvetica, sans-serif;">I have been thinking a lot of what I want to say about the wonderful benefit and I still feel like I am at a loss for words. It was so overwhelming (in a great way) and there are so many beautiful faces that were behind it that I just don't know that my words in my blog could describe how Don and I feel. I can not say enough how much our friends and family that put this together mean to us. We knew they cared deeply about us, but what they put together (again very little experience in this field) was amazing! We will never forget this day! And to those of you that attended (746 people was the final count I'm told) we thank you so much. We know the band and the atmosphere was awesome, but you came for us. You came because some how somewhere you have heard our story and wanted to show support. My God!!!!! We love you all! And the generous donations we received was out of this world! So generous and so genuine. We can't wait to pay it forward and we already have some things in the works. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I did not get much time with any one particular person on Sunday, it was so busy, so I apologize if we didn't speak or if our conversation was cut short. I told Dan and Joe (The master minds behind the benefit) that I felt like I was a Kardashian or something. I even talked to people through the stalls in the bathroom! It was a great problem to have so I am not complaining and I know you all understand if we didn't get much time together. We are still on such a high from the event.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Please stay in touch with us as we continue our journey. The benefit has given us the strength and the courage to keep reaching. We are not at the end of any roads and we feel like we now can not see any end. This is because on Sunday there was such a feeling of love and of God in the room. I know I am not healed, but I do know that I have at least 746 people praying and pulling for me. And I know more, because several have reached out to me that could not make it. Several have sent cards of encouragement. We feel it, and the Lord works in mysterious ways and I do not think he is done with me here! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Chemo tomorrow before Don and I leave Thursday night to see Whitney graduate from the University of North Carolina Asheville. We can not wait to hear her named call. She is our angel on earth. She gave up a semester at school and put her social life on hold to take care of us and our children when I was first diagnosed. I know the saying, you will do anything for family, but this was a courageous thing for a young women to do when we all know how important college is but also how important our social lives are when you are in college. I hope and pray that she gets the best job she could dream of. She deserves only the best! She is beyond amazing! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I have included a video of my speech from Sunday since there was a lot of my family that could not attend because of the distance. So I hope it will download and you can enjoy it. If you can't, I will try to find a way to get it to you. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">We love you all! Keep up the prayers and the support!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Please go to the following address to view the speech: </span>https://www.youtube.com/watch?v=0y6rXTcKQdk&feature=youtu.be<br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Amber</span><br />
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Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-70878255339616643052014-04-19T15:51:00.000-07:002014-04-19T15:51:35.312-07:00Busy Week<span style="font-family: Arial, Helvetica, sans-serif;">Good Afternoon!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">What an eventful week for the Naughton family! Well, as eventful as Lisa visiting, grandparents day, fundraising, chemo, egg decorating and blood transfusions go!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Wednesday was an eventful day for me as Lisa came up to visit. She cuddled and played with Kaner all day. (yes we still have the puppy) It was great to catch up with her. We text all the time, but her busy graphic design company (longfellowdesign on Facebook) and my busy schedule of chemo keep us apart far to often. Wednesday was also grandparents day at Justin's school. Nana and Papa Naughton both joined Justin for a fun game of bingo and then went to his classroom for more fun and games. We ended the night with Justin's final basketball practice.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Thursday I was privileged to have our good friends Al and Jill join me for chemo. They were so fun to have there to talk to and keep my mind busy. Chemo starts every time with blood work to make sure my levels are okay for treatment. This week was a little different because they put me in a room that had a GIANT chair….Don't believe me, check out the pictures! Quickly after my blood work one of the lab workers came to the room and showed my nurse some reports and I knew then I was in trouble for something. Come to find out my red blood cell levels were low. My nurse explained this is probably from the previous chemo drug since your red blood cells don't mature and die off (I may not be saying this right) for 90 days. So I was quick to point out that this is not my fault since my last blood transfusion was 90 days or fewer ago. So in fact it was that poor donors blood that caused me to have low levels and not Amber! The good news was I was still able to get chemo, it just meant that I would need to return on Friday for a blood transfusion. Chemo went well and following that Al and Jill took me out for lunch. It was great to just catch up with them and talk about something other than what is going on with cancer.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Thursday evening was spectacular!! With our friends helping arrange for donations for the benefit on May 4th, our friends Dan and Michele were cool enough to get a local restaurant to set up a fundraiser Thursday evening where 10% of every bill was donated to us. Don and I went with the kids. Earlier in the week the New Lenox newspaper came out and interviewed me about my cancer story and the upcoming benefit. They wanted to get some pictures at Gatto's Thursday night so we attended to eat, take pictures and visit with friends and family. Following dinner our great family and friends stayed and had a follow up meeting for the upcoming benefit. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Friday I reported to my infusion chair at 11:00. I received 2 pints of blood which takes about 4 1/2 hours. The first half I slept through but eventually woke up and was pretty bored and I have decided I am not a fan of TLC's "Say Yes to the Dress". Horrible show! After my transfusion I had to head to the cancer center for my shot to help boost my levels and then off to Target to get some last minute Easter treats:) Nana and Papa Naughton kept the kids last night so Don and I rented Wolves of Wall Street and I stayed up for the entire movie!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Today was soccer and resting. It is gorgeous outside so we all went to soccer practice and Ryan met some friends at the park right by the soccer field. Justin was excited to get his soccer jersey. He is #4! His team is the Panthers and he is so far really enjoying it! Games will start at the end of the month. Easter Sunday tomorrow at the Naughton's house with the Goodnights and Marrone's (My sister in laws mom and dad and sister and husband) It looks like another nice day so hopefully we can spend the day outside.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This week is Justin's spring break. He is booking up fast which is awesome! I am treatment free this coming week. Just an appointment on Thursday for a check up. I am looking forward to spending some time with Justin while he is off school and hopefully having some extra energy since I received some good blood yesterday!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Happy Easter!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Amber</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">P.S. If you live in New Lenox, don't forget to check out the New Lenox Patriot on Wednesday! Also, if you haven't already done so and plan to go to the benefit on May 4th, please do your best to purchase your tickets in advance. My friends and family planning this are trying to be as accurate as possible when giving a head count to Bourban Street. Also to ensure there are plenty of volunteers to work the event the day of. It will be the best event in 2014 so you don't want to miss out!!</span><br />
<br />Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-18515947252595485462014-04-10T13:09:00.003-07:002014-04-10T13:09:44.023-07:00www.cancercankissit.org<span style="font-family: Arial, Helvetica, sans-serif;">I started round 2 cycle 1 of chemo this morning. My levels rebounded wonderfully with the help of a shot after my last round so there were no problems to report. Just hoping to relax and stay ahead of the fatigue. So prayers for that are appreciated.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Since I don't have much other news, I thought I would use this blog entry to plug the upcoming benefit being held for Don and I on May 4th. Our friends are going crazy posting fliers. I am entertained by friends sending me pictures of myself in a lot of bar establishments some that I used to frequent and others that I have not heard of. Our friends and family are working like crazy to get the word out about this event. They are also coming together with several restaurants, spas, golf courses, etc to get awesome raffle give aways the day of the event. On top of the raffles, there is also a silent auction that will be held for items such as 2 condos in Florida and a house rental in Michigan. Oh and BIG SCREEN TV's. If this isn't enough to make you want to attend, I don't know what is.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Kids and adult are welcome on May 4th. There will be several events for kids to partake in and our favorite local band is playing "The Walk-ins". Not only are they the best band, Our friend and Ryan's Godfather is the lead singer! (We were not paid to say this, they really are THAT GOOD!) Check out their website at www.thewalkins.com. Also the ticket price includes beer and wine and a buffet. Please go to the website www.cancercankissit.org to get your tickets today. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The website set up for the benefit talks about what the money will go towards, but to personalize it some, I thought I would share for you here as well. Don is fortunate enough to work for a great company that offers health benefits, but like anybody with benefits, there usually is a deductible that you are required to pay out of pocket before insurance will cover 100%. 2 years ago, I would not have known what my deductible was nor did I really care about my health benefits. Just so long as I carried my card in my wallet and took it with me to my once in a blue moon appointment, I was just fine! I paid my piddly co-pay and went on my way. After being diagnosed last year, we started to see what 1 round of chemotherapy could cost. Last year my insurance paid approx $300K for my chemo and surgery. This year being on now 3 different types of chemotherapy, Don and I have reached our deductible and in fact, we did so in early March. Insurance will now pay 100%, but our portion is not a few pennies. We are paying what we can and going along our way, but we get that me having Stage 4 cancer, when January rolls around, we will be expected to meet the dreaded deductible again. So even if we could pay off this year, this is going to be a yearly expense. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Along with insurance, we have also decided to enroll Ryan in day care a couple days a week not only for him to build strong social skills, but also because with this chemo, I have days of severe fatigue. Being a one income family now, we are watching our money more closely and if I were not ill, he would not be attending daycare. So this will help ease the financial burden of him being there and should we need to increase the number of days he attends, we can feel like we can do that.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Lastly it will help Don and I should we decide we need to travel somewhere for another opinion. Last week I went to NC for an appointment and it was a rather cheap trip considering my parents had miles for me to fly and they paid for our hotel room. Unfortunately we do not know someone in all 50 states and nor will I expect my parents to front the bill. So money raised can be used for travel and hotel accommodations. As I mentioned Dr. Carey at Chapel Hill gave me a few trials that I may qualify for, but none are local. The closest one they found was in Ohio at this time. So while I am not going on this trial, it shows that in the future a trial may require me to travel.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So in a nutshell, that is what we are up against. We are so appreciative for all that have donated and would LOVE LOVE LOVE to see as many of you there as possible on May 4. Don and I have the most supportive network and not only would I love to see all of you, I want our family and friends that have been working so hard towards this benefit to see it pay off. So if you can, go on the above website and purchase your tickets in advance and come out that Sunday to see friends, family and US!!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">We love you all!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Amber </span>Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-55034804349524907662014-04-03T15:42:00.000-07:002014-04-03T15:42:27.459-07:00NC TripWow, you all know how to make a girl feel special on her birthday. Whomever thought of the perfect idea of sending me cards on my birthday, you are AWESOME! So unexpected! They keep coming in and I don't know what I am going to do when I go back to the mailbox and only find the bills and junk mail! What a great idea! Thank you to the card fairy who remains anonymous at this point! My birthday was super! Don woke us up before he left for work and we had donuts, mine with candles. After Justin was off to school and Wendy came to take Ryan to his 2 year well check -Just another small thing that a cancer patient shouldn't do since it involves going in to a facility that has more germs than those found on an elevator button I'm sure, I left for the airport. My flight was on time, I popped an Ativin before take off and slept like a baby the entire way there. Once landed, the plan was for me to take the hotel shuttle over to the hotel and meet mom and dad there. Small mishap on my part, after checking the confirmation for the hotel over and over to ensure I got on the right shuttle, I got on the wrong one. But funny thing is, traveling without hair has some perks. The nice gentleman was kind enough to bring me to his competitors location. Yeah, I felt bad about it, but I'm sure it happens all the time. Mom and Dad arrived shortly after I did and we headed to Sullivans Steak House in Raleigh. Great service and great food! Mom and I had steaks and dad the fish. After dinner, they came with a HUGE piece of strawberry cheesecake with candles. BONUS-I got to make yet another birthday wish! One will never tell what the wishes were:) We really didn't plan to have cheesecake because Whitney had ordered 3 special cup cakes for us to share. Oh well, you live once right?<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijxnFS2BY_vhyphenhyphen3Ih3L4nZRSbD5i0PkuRnCpscS5bRULrMpP3UCqCDXgrG4zVdbFfnt_xGrislsLOg0e_sTEVLYB6PD4kkeon3TwLw8NYSFvrkGkwBKbEHnZOYT5mZsc0xSfezM04ONxBM/s1600/IMG_3573.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijxnFS2BY_vhyphenhyphen3Ih3L4nZRSbD5i0PkuRnCpscS5bRULrMpP3UCqCDXgrG4zVdbFfnt_xGrislsLOg0e_sTEVLYB6PD4kkeon3TwLw8NYSFvrkGkwBKbEHnZOYT5mZsc0xSfezM04ONxBM/s1600/IMG_3573.JPG" height="224" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Naughton Birthday dinner</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My cards:)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH3n43-ADDhJqJl5jbtGkK02jMN6Ec_hUiaU5GDR_OM2OBTp68K-PxJWy6edGaBrRHsEGK3Chn_Rjn4vg9wtdnr6Uvoswhsk9ZPiEbXO6f6wQ0bjI_KpWqmMxE4l2J9kymXtChRygeXQo/s1600/IMG_3576.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH3n43-ADDhJqJl5jbtGkK02jMN6Ec_hUiaU5GDR_OM2OBTp68K-PxJWy6edGaBrRHsEGK3Chn_Rjn4vg9wtdnr6Uvoswhsk9ZPiEbXO6f6wQ0bjI_KpWqmMxE4l2J9kymXtChRygeXQo/s1600/IMG_3576.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Garrison Birthday dinner</td></tr>
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Wednesday morning we were not in a big hurry to get up and get going since my appointment was not until 11:00. So we slept in and then the 3 of us passed around the 3 different flavored cupcakes. Breakfast of champions, but we couldn't let them go to waste and it was my birthday!! We left and headed to the Chapel Hill Cancer Center around 10:00. It was great to have mom and dad with me for the day. Them living away, they hear the details of my appointments, but I know how badly they want to be there. First stop was registration. That went smoothly and we were escorted to the waiting room. The staff was more than helpful and friendly. Some also reminded me what good hands I was in with Dr. Carey so that made us feel good. We were informed that Dr. Carey was running a bit behind and that update helped us since I had planned to fly back that day. When we were put in a room, there was a nice couch in the room for me and my parents to fit nicely and still they kept us updated on the delay and offered us food and water. So this facility is top notch - not many places have nurses that double as waitresses. </div>
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First I met with a nurse practitioner who was probably about my age. She came in with my book of previous Dr. notes and orders. She had 2 pieces of paper and asked that I bare with her as she went over everything. I was so impressed that she had everything right! They had only received my entire file the Friday before so she really did her homework. Side note - remember my trip to NY about a year ago when I showed interest in a trial. I was only expecting a nightmare like that so even if she missed something, I didn't notice. She impressed us all. So back to yesterday, she mentioned to me that they had discussed my case at their board meeting that morning and wanted to know if I could stick around yesterday to also meet with a geneticist. I was so impressed that they cared so much about my case to talk about me at their meeting that I would have stayed a week if they asked. So at that point, we pushed my flight back (another topic for another day if US and AA don't get their act together and respond to my e-mail). </div>
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Next Dr. Carey came in and returned with the nurse practitioner who seconded as a court reporter as she typed pretty much word for word the conversation between Dr. Carey and me and my parents. She did an exam and then had me get dressed so we could talk. Dr. Carey first explained the tough part that I hate hearing which is: We are not looking to cure me, we are looking at finding the right drugs to keep this disease from spreading any further. Yes, that sucks, but it was not anything we didn't know. I explained to Dr. Carey that I am looking to live as long as I can, but also be able to have a good quality of life. I did tell her if there was a drug that I could take while sitting in the hospital on my death bed for 2 months, I would take it if I would be cured, but if not, I am looking for good quality of life and to live as long as possible. She agreed with that, that I am on the right drug for now. She also went over drugs she would recommend down the road should this one stop working. She also talked with us in regards to a few trials. None of which I could participate in through University of Chicago at this time, but since we just started this drug, she didn't recommend we stop this drug and move to a trial at this point. Also since I visited there, she will keep me in mind should they start any trials in the future that I may be eligible for. Next she asked me about Justin. I explained to her that we are very open with him and she was happy about that. She did inform us that sometimes a child can think they caused this to happen so we have to continue to make sure we answer his questions and let him in on as much as he needs or asks. </div>
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Her next question was me and Don. I informed her we are hanging in there, but times are tough. We are stressed to the max and neither of us are good about asking for help. We would rather be the ones giving than receiving. She did a good job beating on me (in a way that I could handle it) to let me know that we have to take this help in order for me to fight cancer. I agreed and my goal is to try harder at taking you all up on dinners, help with the kids, etc. I'm going to say this in a way that hopefully does not come off harsh. There are times I am not up for company, I either do not feel good, I'm sad, I don't want to talk, I just want to lay in sweat pants on the couch, my excuses for blocking you out go on and on. It is in no way a reflection of you. It is just that. And while most of you have kids my kids age and it is great to get the kids together, having kids in the house sometimes adds to my anxiety about germs, about craziness that kids cause and well….it is just overwhelming. So no, this is not my way of saying you aren't invited, it is just overwhelming when someone says "Can I bring dinner". Because my mind blows it up into something it probably isn't - my mind says it turns into a full day of entertaining you and providing fun and games for your kids and mine and staying awake and entertaining when deep down, I know that is not what it is, but damn it, cancer is overwhelming!!! So please don't give up on us. Don is always up for company and I know I suck so don't blame him, blame me! So that was that, I am not super woman and I will stop trying to be. We enjoy any pasta, Mexican, casserole, etc or take out:)</div>
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<tr><td class="tr-caption" style="text-align: center;">Outside the cancer center before appointment</td></tr>
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Sorry if this is post seems long, it is not even close to being over. I added another picture so you could grab some water and take a look at my cool new hair. By the way, Dr. Carey complemented my well shaped melon. Okay, back to the story: Next she asked what questions I have and I asked her about diet and exercise. I told her I have read all about how sugar feeds the cancer and she interrupted me and quickly said "Who told you that, Dr. Nanda? Dr. Phillips? Dr. Hantel?, I certainly didn't tell you that". I thought this was funny because while she was being a smart you know what, it was so nice to finally hear someone say to not go hog wild, but stop beating myself up about what food I ingest when sometimes a nice Pepsi and a bagel sounds better than a freshly juiced glass of Kale, Carrots and a small amount of fruit since fruit has natural sugar in it. So I will still watch my diet, but I won't try to follow it so closely that I sometimes think after a cheeseburger that I can feel the cancer growing while it is being ingested. Again I will mention that cancer is over whelming!</div>
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So long story short, her goal and mine is to stop taking blame for this cancer. I did not cause it to happen, I am doing everything I can to fight it, I am seeing every specialist possible to stay in charge and whether the cancer stays in my lymph nodes or travels further, I am not expiring anytime soon. </div>
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Following her visit I met with what I will call Genetic engineer #1. She came in and went over a lot of what the genetic counselor from Edwards did a year ago when we did the BRAC testing. (I was negative which means no one in my family is at a higher risk of developing cancer) After going over my healthy family history she didn't recommend any further genetic tests, but didn't want to cross that off without having her colleague come in and give his opinion (Again, we received the red carpet and felt so loved and important) Next Genetic engineer #2 came in and spoke with us and after speaking he too agreed no further testing is necessary, but wants me to follow up with him via email if anything were to pop up or in a year in case something new on their end is discovered. </div>
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The last step was meeting with a clinical coordinator in regards to a test (pardon me, I forget the name) that would take a sample of my tumor and a sample of my blood and have my genetic make up reviewed to see if it can pin point any targeted therapies that might work for me. The bad news with this is, they are usually only 5% successful in finding a targeted therapy with this test. But since it is a trial, it will not be charged to my insurance company and since I have had my tumor checked for 2 different things that it has failed to suppress, maybe this is the 1 thing that will give us some good news. I mean, enough bad news is enough so maybe just maybe this is it! This test can take 3-4 months for results so stay tuned!</div>
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After this, we were 5 hours in. So off to get some food and to the airport we went. It was a great visit with my parents. While we shared tons of tears, we also shared tons of laughter and like I said 12 pages back, it was great to have them tag along and witness first hand what Don and I go through almost weekly. So kudos to them! So home sweet home. Back to see Dr. Phillips tomorrow for a check up. I am expecting blood work and probably just a quick check up. Scans will be done after 2 more cycles. I feel good as far as my energy. Pain was minimized some, but today has been giving me trouble. I'm chalking it up to traveling since these past few weeks I have almost felt a lift on the pain front. <br />
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Lastly, those on Facebook have probably seen this site called "<b>www.cancercankissit.org</b>". This is a website and benefit that is being put on by friends and family of Don and I. We are completely amazed at our family and friends around here. Again, we hate to ask for help, but we get everyone loves us and everyone wants to help. So this wonderful benefit will be held on May 4. Please check out the website and if you can make it, we would love to see you there. Looks like tons of entertainment, games, drinks, raffles and donated items to bid on or buy. We would love to see you there. If you have questions in regards to it, please see the flyer for people to contact or you can reach out to Don or I and we can get you to the right people. </div>
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Thank you for the continued prayers and support. We can feel it, keep them coming!</div>
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Lots of Love,</div>
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Amber</div>
Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-63151507578919820572014-03-24T10:46:00.000-07:002014-03-24T10:46:13.622-07:00Update and Prayer RequestWell I have been putting off my blog for a couple of reasons. One, I'm exhausted and two, I really don't know how to put into words how I am feeling. My PET scan was Tuesday and while I was not overly confident, I was not letting it bother me. It could have been because I was still feeling a bit exhausted from my previous chemo round and that my parents were here and we were busy researching some fun things that did not involve cancer. It is still a family secret I believe so I can not disclose our research at this time:) If you know already, consider yourself special!!<br />
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Thursday we unfortunately did not receive the news we were hoping for. After only 3 cycles of on this trial, we learned that this stupid cancer decided to set up shop in a new lymph node in my lung / chest wall. I had wondered if there was something going on as I was having some pain in this area, but from the previous scan knowing there was already a node close to there, it made sense to believe it was the chemo knocking out that cancerous node. Nope, that wasn't what it was. It was very emotional for Don and I to find this out. Dr. Phillips gave us the news and informed me I was no longer eligible for the trial since I had progression in a new spot. At first I stared at her and waited for her to say something positive, when that didn't happen, I broke down. Dr. Phillips is so sweet and as I mentioned before, I believe we are about the same age, so I know this is not easy for her to give this news to us. After she rubbed my back for awhile, she decided to give Don and I some time alone. After what seemed like forever of me crying, she returned and we went over the next options. She had already consulted with a few other doctors including Northwestern and they all felt the next drug of choice was Eribulin. It is given for 2 weeks on and 1 week off - same as what the trial was. We will do 3 rounds (9 weeks) and then repeat a scan to ensure we are on the right path. I was anxious to start and Dr. Phillips was able to get our insurance on the phone and approved and we went off to the infusion lab for my first treatment. <br />
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My parents were anxiously waiting in the waiting room. I think they too were hoping for some reassuring news that the current drug was working. I was able to text a few words to my mom to prepare them since my eyes were about welted shut from crying. On the way to the infusion lab a few nurses stopped to hug me. It makes me feel good that the entire team at the University of Chicago is rooting for me and when I get good news, they are happy and when I don't, they are there for me to give me a nice hug. I think it was also nice for my parents to see what good hands I am in. I hope soon we can all high five, fist bump, hug, and cry tears of happiness. I am due I believe. This new infusion is very fast. It takes longer to get my blood levels than the treatment. The treatment takes 10 minutes. I was a little let down with this - I do enjoy my Benadryl induced coma. Oh well, after treatment I was able to crawl into bed and sleep the afternoon away while mom and dad tended to the kids. <br />
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Don and I have decided at this point, we need more confidence that we are on the right path. As I told Dr. Phillips, I feel like we are picking these drugs off way too fast and every time I get a scan I learn how much closer I am to death rather than how much closer we are to recovery. She has reassured me that we have more to go, but we have decided that it is time for a 2nd opinion. Back in January when I started the trial, I had reached out to Dr. Lisa Carey through Chapel Hill, NC. She is listed on-line as a triple negative guru. At that time, we e-mailed back and forth and she agreed with the trial and knew Dr. Nanda (Dr. Phillip's boss) At that point we were comfortable, but now that we are on to the next drug, I think it is good to get in front of her and have her look at me and review all of my scans and prior treatments. I was able to get in with her on April 2nd. I will fly out on my birthday (April 1st) and my parents will meet me there to take me to a nice dinner. We will stay at a hotel and then go to my appointment the next day and then I will fly home. It will be a quick trip, but I'm really looking for more reassurance or another option for treatment. The hope is they all agree, but if not, she can hopefully concoct a plan and have Dr. Phillips treat me here for it. <br />
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Since a lot have asked (I'm grateful for your questions because it shows how much you are truly invested in my recovery and well being) Why don't they know what to give me. It is not easy to explain, but here I will try. Triple negative means the cancer is not hormonal. Because it is not hormone related, there is not a set treatment. Triple Negative patients are grouped under one huge umbrella of "We don't know yet what to do with you so sit tight". Not funny, it is true. There are probably several different forms of triple negative, but science has not yet been able to detect each one so that is why we are just throwing things at this cancer and hoping me get a bulls eye. It is super aggravating as a patient and I know it is for you too. Next time you think of donating to something, remember breast cancer or more particularly a triple negative foundation. More research is necessary to detect what we need in order to survive. I have met several triple negative patients. Some are in remission and some like me are fighting for our lives. I am not down playing hormonal breast cancers because like triple negative, some women have recurrence or do not respond to treatment. It just goes to show how much more work is needed to cure this stupid disease. So hopefully this helps.<br />
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Don and I are doing okay. We are down, but trying to stay hopeful that the third time is a charm. We are exhausted physically and emotionally. I can speak for myself here and not him when I say that I am having a hard time getting through the day with out tears. I feel like I was overly confident with the trial since I had done carbo before and responded to it. I feel like my body is failing me and it is easy to blame myself. I know I am doing everything I can. I may not do yoga daily anymore or juice regular like I should be, but I am doing what I can physically do daily and that has to be enough. So see, I know this, it is just hard to remind myself of this all the time. I also know that I set the mood these days at home which is extremely difficult. Everyone- parents, friends, Don and the kids follow my emotions. So that is difficult because I'm human-I break down, but when I break, so does everyone else. And when everyone else breaks down, it makes it all real and scares me because it shows me that they are scared too. I'm not saying don't cry in front of me, but this hell has got to end. My faith in God has grown stronger and I have not lost hope, but this is beating me down. I need your prayers now more than ever. <br />
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Some has asked about my hair, my hair is getting weaker by the moment and will probably be gone by weeks end. I'm actually okay with that. I will miss it, but I left it short for this reason - I did not want to become attached to it. My fear is Ryan. He was too little to remember me without hair last time, so I do get concerned on what he will think. But I'm ready and my hair dresser is as well. Justin reminded me it is just hair. Sweetest boy around if you didn't already know that. He also has reminded me not to get upset because it might make my cancer cells grow. See, cancer is on all of our minds, it is a word used several times during the day here. I wish it was a swear word that I could tell him you can't say, but we have to teach him about this unfortunately and we have to educate him since he is forced to go through it with us. Someday this will all make sense….Until then, keep praying.<br />
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Treatment #2 on Thursday and then a week off. <br />
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Love,<br />
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AmberAnonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com1tag:blogger.com,1999:blog-6554619991793904973.post-86005860084073782192014-03-13T17:55:00.000-07:002014-03-13T17:56:17.725-07:00Super Powers<i>"You never know how strong you are until being strong is the only choice you have"</i><br />
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I am slowly but surely making my way back from being "under the weather"....Wow, last weeks chemo really kicked me while I was down. Sister Jess came in last Wednesday night just in time to join me for chemo Thursday. It was also a special day because Ryan turned the big "2"! Back up some, I had went Monday through Wednesday last week for a shot in order to get my cells to produce more quickly so my counts would not be too low for the 2nd round of treatment. Lucky for me, the shots worked from just Monday and Tuesday and Wednesday they just did the blood draw and confirmed chemo was a go! So Jess and I packed up for chemo Thursday. I was not the best host as the Benadryl knocks me out. I did confirm with the nurse that the dose on benadryl is like 4 times higher the dose someone would take on a given night. Why it is so high, we are not sure....Not even the nurses, they are just following every rule that goes along with this clinical trial. So off to la la land I went and Jess just read on her Kindle and made friends with the nurses. <br />
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Thursday evening we celebrated little Ry Guy's birthday. With Jess here, she summoned me to the bedroom all day Friday to rest since we were having a small get together on Saturday to celebrate Ryan's birthday with family and friends. Saturday has been my rough day and this past Saturday was no different. I was sleepy! My tiredness did not go away as the weekend progressed. Jess left and Whitney came in and still no energy. In fact I was so tired and weak that I was very depressed and spent a lot of time crying. I hate to put my sadness in my blog because I worry that others will worry about me, but I was really down! I wanted to spend my time with my sisters here having fun, not putting the entire burden of the children, dinner, dog etc on them. I tried acupuncture and that didn't really boost me at all either. In fact, from the teeny tiny needles, I bruised on my hand! So Wednesday I went for blood work and confirmed my red blood cells were low and I needed a transfusion! <br />
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Those local know we were lucky to receive more snow on Tuesday night so when I arrived at the cancer center on Wednesday for a blood draw, the parking lot was not plowed and just walking from my car up to the building (jumping a few snow drifts) I was exhausted! My heart was beating in my head type of exhausted. So at first when Dr. Phillips explained the cancer center doesn't do the transfusions and you have to go to the hospital for them so the time and date for the transfusion was out of her hands, she quickly got on the phone and called when I told her how weak I was. Thank goodness! She probably doesn't hear me complain enough so when I did, she probably was about to call a code red on me! The transfusion was painless - not short, but painless! A transfusion takes around 4-5 hours. Thank goodness I was so tired, because guess what I did? You got it - SLEPT! Slept as I received super powers or as some call it "tiger blood".<br />
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Today I woke up feeling refreshed so Whitney, Ryan and I attempted to hit the mall and run some errands. We were able to do about 1/2 on our list of errands before nap time was calling both Ryan and I. I napped this afternoon and now I feel good. I just hope with this boost, my levels will rise enough for chemo to start back up next week. <br />
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Tuesday is a dreaded PET scan with results on Thursday before treatment. In order to stay in the trial, the PET must show that the cancer has not progressed more than 20% and it must show some improvement. So I am scared of course. I feel like this chemo is working some, but my skin is still red and I still am medicating every 4 hours. So I do feel like we need some more time, so I guess my hope is that with this next PET scan, there is some positive results from the chemo and that the cancer has not moved elsewhere. This part will never get easy for me. I thought after my last one and getting not so great news was going to be the last time I worried about scans, but that is not the case. I am scared and know that while we still have other options, we will be picking another one off and that my friends is scary! So I am trying to concentrate just on today and today, I feel better than I did yesterday so that is a plus, right? <br />
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Whitney is here until Saturday and then my parents will tap in as she taps out! They will be here for a week and will help get me through the dreaded wait of the PET scan and join me for chemo on Thursday. For anyone that donated to the travel fund or have sent money to my family, we are forever grateful. It means so much to us to have my sisters and parents here with us through this. Not only does it give Don and I a break, it gives them the peace of mind they need to see me in person to see the "real Amber". Over the phone or FaceTime does not do us justice. I need them and they need me. So thank you! To my local family and friends, you are not forgotten! We have received an outpouring of support around here. Helping with the kids, food, snacks, etc. You guys help to make our day to day continue like nothing is wrong, so thank you!<br />
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Prayers for this next week for my PET Scan results to be positive, my energy to continue to replenish and for my family as they travel in and out. <br />
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Love to all,<br />
<br />
Amber<br />
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Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com1tag:blogger.com,1999:blog-6554619991793904973.post-11692860566317411812014-03-01T16:52:00.002-08:002014-03-01T16:55:18.819-08:00Chemo Round 2 cycle 1Hello! We are hanging in there! I slept through treatment again on Thursday. I must be the easiest patient there is. Give me my Benadryl and I'm out like a light. Wendy had Ryan during chemo on Thursday and when he woke up from a nap, he was running a fever. Being extra careful, we decided it was best if he went to spend the night with nana Naughton until we could get him into the doctor on Friday. Friday I woke up feeling good (I usually do the day after treatment) So I ran some errands. Ryan's appointment didn't go like I wanted. I wanted to hear he had an ear infection and was not contagious, but we were told he had a virus and both his doctor and my doctor both felt it was better if he was not around me until he was fever free for 48 hours. This of course made me sad and think again how much my life stinks at times! Don went to his parents and stayed with Ryan last night while Justin and I held the fort down here with Kaner! I felt great until about 9 this morning and then the fatigue hit. So I slept from about 9:30 until 2. Waking up, I was in pain due to not taking my pain medicine so I took that and then had to lay down some more. Now I feel just okay. Hoping tomorrow is better! <br />
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Ryan has been fever free since last night so hopefully we can bring him home tomorrow. I am so appreciative for Don and Wendy to take him without really any notice. I also love that he doesn't care that he is away from us and is having fun and is in great hands. Thank you nana and papa Naughton! His birthday is Thursday so he needs to be well for that. Not much more to update here. Just good thoughts and prayers to re-gain energy and for my levels to stay up. Oh, I guess one more thing. So this cycle I did have another high dose of carbo and the plan is for me to go in Monday - Wednesday this week for a shot that will hopefully keep my levels up. We shall see! So positive thoughts and prayers for that!<br />
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Off to relax and hopefully going to bed soon! I feel like such an old lady!<br />
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Amber<br />
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P.S. Triple Negative Breast Cancer Day is Monday, March 3rd. There is a good site on Facebook for this and it talks about how every 30 minutes someone new is diagnosed with Triple Negative. I wish they would find the right medicine for this! Go to Facebook under Triple Negative Breast Cancer Foundation for more information! Stop and think about us though on Monday. It is really scary and sad to think about this!Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-55983131691256382882014-02-24T09:06:00.002-08:002014-02-24T09:06:41.605-08:00Garrison Get Away 2014<div class="separator" style="clear: both; text-align: center;">
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For those on Facebook, myself along with my siblings probably did a good job blowing up your news feeds with pictures of our trip! For those who are not Facebookers you missed out but I will post some pictures here as well! This past weekend the Garrison's met in Asheville, NC for a much needed "Garrison Get away, 2014" We left Thursday and returned yesterday. I flew out of O'Hare and met Jessica who had a connection from Reno in Chicago. Driving to the airport on Thursday our take off did not look promising. It took me an hour and a half to get to O'Hare and it was not due to traffic, it was due to horrible fog. Once I arrived and parked, the fog started to lift, but that is when the rain and wind started. After finding my gate (that is a blog entry in itself) I sat next to a gentleman who told me he was trying to get to Oklahoma for the past 4 hours but his flight was cancelled due to weather. He also told me that the plane he was supposed to be on was diverted to Indy due to the weather. I started to panic that Jess would be sent to Indy as well, but soon this nice gentleman tapped me on the shoulder to tell me that someone was starring at me and waving. I look up and it was JESS! We moved from gate to gate as they kept updating a new gate for our flight. We were a 1/2 hour delayed but we took off with the caution from the flight attendant that this was going to be a bumpy ride. Good thing she warned us! Jess made a great point, seeing so many flights cancelled or delayed was the best sign from above that our family needed this time.<br />
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Friday we visited the Biltmore which is amazing and I have picked out a stunning bedroom for myself, we followed this by a wine tour at the Biltmore and then finally a stop at a hotel for fancy drinks and a beautiful view of the mountains! We then took a short rest before going to dinner and listening to live music. Saturday we went to Whitney's favorite brunch location, which looked to me like "E-coli on a stick" (a hole in the wall restaurant) but I ate my words after we ate there! The food was excellent! Hats off to the chef on that one Whitney Garrison! We then did our version of hiking - driving up the mountains and stopping at a look out point to get pictures. This is where I surprised the family with a Jimmy Buffet Parrot Head hat that I found in Whitney's room. Right before pictures I put it on! We all had a great laugh at this! The real hikers that took our pictures didn't seem to get it and some of you might not either - we were born and raised on Jimmy Buffet music thanks to our dad! And to add to that, for those that did not know, Saturday was National Margarita day so it seemed fitting. After our hike, we did a wardrobe change and headed to downtown Asheville. We went to several shops and then did a comedy bus tour of Asheville. The comedian was excellent and our faces hurt from laughing so hard! Anyone wanting a nice place to visit should go to Asheville! It is a wonderful city! I hope to return for Whitney's graduation for another free stay at her apartment before she moves!<br />
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<tr><td class="tr-caption" style="text-align: center;">Parrot Head </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Biltmore House</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Not a lot scares me these days!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Beautiful colors and view!</td></tr>
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On the cancer front, I am in a lot of pain and would appreciate the prayers for this! I was able to enjoy the weekend, but did not sleep well due to taking pain medication which makes me itch. I itch and then that hurts so I medicate and then itch again! It is a vicious cycle! This makes me so angry and also sad because we all know it is the evil cancer making me have this pain! So I am anxiously awaiting Thursday so I can be poisoned with chemo! I just hope with the chemo my levels cooperate this time and that I can stay away from germs. I also hope it will take away some of the pain or we can find a different way to manage it. At times I feel like it is worse than contractions during birth. No joke - it is pretty intense! At least with child birth you get a cute little baby out of it….<br />
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With March approaching we have a crazy busy schedule. All fun of course! First, Ryan will celebrate his 2nd birthday on the 6th. Jess comes in March 5-9, W<span style="text-align: center;">hitney 9-16 and mom and dad 16-23….Although it will be nice to have company and a distraction. I also will have chemo and a CT scan to check the progress of the trial. So I will be extra anxious. Hopefully we are back on track this week and the scans reveal we are on the right track. Prayers are much appreciated!</span><br />
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Love to all!<br />
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AmberAnonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com2tag:blogger.com,1999:blog-6554619991793904973.post-20649353145821105402014-02-15T18:13:00.000-08:002014-02-15T18:13:35.227-08:00Cycle 2 - Take 1<i><span style="font-size: large;">"We didn't realize we were making memories, we just knew we were having fun!"</span></i><br />
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I showed up Thursday for chemo ready to play! Not really, I was actually still feeling a bit weak and fatigued, but I showed up and that was all that mattered. I told my nurse I was going to enjoy my spa day by watching Good Morning America, sitting in my heated and massaging chair and reading my book on Yorkie Poos (will fill you in below) We did my blood draw, I took my trial pill like a good girl and then waited. You have to wait for your blood work to come back before starting chemo. Soon Dr. Phillips came in and told me spa day would be cut short. And yes, she called it spa day….Seems like the nurse must of told her my plans:) My ANC count was at 520 and to be treated it had to be over 750. For those of you that didn't take classes to become a Dr or nurse ANC means:<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;">Absolute neutrophil </span><b style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;">count</b><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;"> (</span><b style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;">ANC</b><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 16px; line-height: 19px;">) is a measure of the number of neutrophil granulocytes (also known as polymorphonuclear cells, PMN's, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection. </span><br />
<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">So Dr. Phillips thought it was best not to go forward with treatment and instead send me home with an antibiotic just in case I got sick. Very nice of her, but another medication? Another fear since we had a family get away planned for later that afternoon? </span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">So now I am on a 2 week hiatus awaiting cycle 2. I asked if I came back Monday after giving my counts a pep talk could we try round 2 of cycle 1 and the response was no. Basically if you can't do chemo, you just keep the same schedule. She did explain to me that she gave me a higher than usual dose of carbo due to the Triple Negative so that may be why it is taking longer for my counts to come back. I don't know why these doctors don't realize that doing this is really nice because their intentions are right (to try to kill the cancer) but this is not the first time they think I'm invincible….Remember last year round one of carbo, I ended up with a transfusion…..Her plan for cycle 2 is to give me the same dosage of carbo because it seems to be working and then going forward if my counts don't rebound fast enough, rather than canceling the cycle, she will dial back the carbo. From her looking at my skin, I did get a good reaction out of her. She felt the skin was definitely lighter. I have noticed that while I still have pain and am medicating every 4 hours, I have been able to get to the 4 hour mark rather than crying and pleading for the last hour to end. I also have noticed my collar bone lymph node is smaller.</span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">I was not pleased about this and in fact I cried to her that all the hard work from last week is down the drain. 2 weeks waiting for another dose of chemo is agony and the cancer is not gone. She agreed it was not the best case scenario but reminded me that with my counts so low, the chemo had to of killed some of that cancer. She also explained if I had chemo, she was sure I would be in the hospital by the weekend with my levels. So the smart thing to do is wait….February 27th is cycle 2 round 1. </span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">We escaped to Wisconsin Dells for the weekend for some indoor water park fun! Justin has a 4 day weekend so we left Thursday afternoon and got home this afternoon. The kids had so much fun and Don and I did too. It was great to get away and just be normal. Again I was doing things that I don't think many stage 4 patients do so that always makes me smile and pat myself on the back. I climbed a million stairs to do a fun slide (by myself since Justin was being a chicken) I reached the top and while I could feel my heart beat in my head and was winded, I still smiled because I did it….all while carrying a tube! I held Ryan in a pool with a life jacket on while he tried to play basketball, soccer, monkey in the middle, etc. Yes, I was wiped out, but I DID IT!!!! There were times that I honestly forgot I had cancer. </span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">So we have decided to add an addition to the family. We have had Dave the fish for a few weeks and he is great, but he just swims and doesn't really do much for us. I mean we love Dave and take great care of him, but he just wasn't cutting it so we have decided we are going to adopt a yorkie poo puppy! We put the deposit down a few weeks ago and today stopped to visit him since he was on the way home from the Dells. He is 7 weeks and we can pick him up after 8 weeks so the plan is for me and my sister in law Lauren to go get him on Tuesday the 25th. I can't wait. Ryan was super excited! Justin was excited but a little timid. I know as time goes by he will fall in love with him. We all instantly lit up when we held and played with him today. I do believe while we may be crazy for adding another stress to our lives, he will be the perfect distraction too. </span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">This coming weekend will be our first Garrison vacation. By that I mean mom, dad, Whitney and Jess. We will be meeting at Whitney's in Asheville, NC. We leave Thursday and come home Sunday. It will be nice because Jess is flying from Reno and I will hook up with her at her connection in Chicago to fly to Asheville. I am so excited. It will be nice to get away with my family. I will miss Don and the boys, but I NEED A BREAK! Don can have the following weekend for anyone that wants him! But next weekend is all mine!</span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">Thank you again for the prayers and thoughts! I appreciate them so much! Our travel fund continues to grow which warms my heart and my month of March since it is already filled with weekly visits from family!! On behalf of my family, we are forever grateful! </span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">Love, </span></span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="line-height: 19px;">Amber</span></span>Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-25616735508531180122014-02-08T19:25:00.001-08:002014-02-08T19:45:06.029-08:00Chemo - Round 1<i><b>"At the end of the day, all you need is hope and strength. Hope that it will get better and strength to hold on until it does"</b></i><br />
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Chemo started Thursday. Being in a clinical trial, I have learned that I am going to have to just roll with the punches more. Stinks for me since I like a plan, but that didn't seem how it was going last week. Monday I had to go to the Cancer Center for a blood draw. Some might ask, weren't you just there on Friday for your preliminary blood work and the answer is yes...I think everyone enjoys a $50.00 copay and they think this is hilarious - us not so much. There is one blood draw that has to be drawn between 8-9 am. So Monday morning (day after the super bowl - good thing I was not drinking the night before) with Ryan and Justin in tow, we headed off for this quick blood draw. Apparently Dr. Phillips didn't put the orders in, or the other side was the phlebotimist didn't know what color of cap to put on the blood draw, it was delayed. So the Justin was sitting still, but Ryan was touching everything in site and this was really irritating to me because he is over a cold, but his cough sounds horrendous. So the gentleman in the waiting room I could tell was not amused. So I was following him around picking up everything he touched. Good news is, I'm glad that Dr. Phillips and the nurses met my sons. In fact Dr. Phillips made a comment like oh they are so cute and I responded with "yes they are my life". Maybe her seeing my little beauties, we won't have anymore careless mistakes. Nope, then I am told I need to come back Wednesday morning to get the trial pill to take in the presence of the trial coordinator and nurse. Because the drug is covered under the trial, it isn't something that can be picked up at Walgreens. I don't get the sacredness of it, I highly doubt I will slip it in someones drink or not take it. But whatever, I show up with Ryan after dropping Justin off at school only to find out that it had not arrived yet from the Hyde Park office. I'm not sure if it needed a police escort or what. So I was not amused, it had snowed the night before and a phone call to say don't come would have been nice. Side note, I was smiling on my way through the parking lot carrying my 25 pound little boy with the wind blowing and snow hitting us both in the face. Take that cancer - I'm still able to do everything normal people can do! Now back to it, so around noon the coordinator called and said the pills were in. So off we went to take the pill and head back home. <br />
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Thursday morning I reported to my chemo chair at 9:00 am. This being a new Cancer Center, I was a bit intimidated. Most chemo chairs were in private rooms with only about 6 being out with other people. At Edwards Cancer Center I preferred to be on the floor, because I was not "sick". But I went to a room and I felt that some that came after me that had to sit on the floor in their chairs felt like I had not earned my keep yet. Oh well, I will be staying in a room as much as possible. The chairs recline, they massage, they are heated, they have a TV attached to them. I told the nurse they better not advertise or more people will want to get in there! Yeah right! So I have decided to try chemo without a port. These drugs are not as dangerous should they go outside of my vein on accident. The problem is, because of the lymph node removal in my right arm, I can't have blood draws or pressure checks with that arm. So please root on my left arm that the veins can keep up!<br />
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Last year I worked through chemo and didn't let the side effects get to me during treatment. Well with nothing but pinterest and facebook, as soon as I had my benedryl (used in case you have an allergic reaction to any drugs) I was out-probably had something to do with the heated seat too! It was awesome. Next thing I knew, I was being woken up and told to go home! I came home and slept most of the afternoon. Friday I was on my own with Ryan and did fine. I was a little uneasy because I didn't have the distraction of work to keep my mind off of things. Well the man upstairs must of felt my anxiety, because as I was leaving to take Justin to school, the church called and wanted to know if I could work on a project for them. So I dropped Justin off and picked up my tasks from church and came home and played with Ryan and worked on stapling 120 packets together for the church. He knew I needed something - Thank you God! I ended up sleeping when Ryan napped and took Justin to a school event last night. During the night last night I woke up sweating to death and felt really sick but was fine this morning just tired. I slept all afternoon and then played with the boys and feel great so I'm hoping that is it for this cycle. Round 2 is Thursday and then a week off. <br />
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The kids are doing okay. I enjoy quiet time rocking Ryan to sleep. Probably not the best habit, but this is my only time with him where he will sit still and I can either sing (he likes it so don't judge) to him or just think and pray while he dozes off. Then Justin lays in bed with me and lately he has been asking some tough questions so that has been difficult, but in a way it makes me feel good to have that time with him and to answer the hard questions. One question was if I knew anyone else that has had breast cancer 3 times (he says 3 times because he must think it left and is now back again). I asked him why he asked that question and he said if someone else did before me, that would mean I will be okay because cancer can kill you. He also told me that family is the most important thing and I agreed and he said but right now with your cancer, you are the most important thing. I cried to him and told him that someday he will make the best husband, friend and daddy. He has such a big heart and has so much on his plate. I wish he could just worry about what other 6 year olds worry about. Sad thing is, some of them might worry about losing their parents, but don't talk about it because they don't have such a scary thing in their face all the time like we do. He is in counseling through the school and we will see how a few sessions go and see if he needs more. Keep that little boy in your prayers!<br />
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My friend Megan and Linda have put together a funding that will help my sisters fly in when they want to or need to. I am shocked that in the 2 days it has been up on Facebook, the outpouring of support we have received. I now realize that growing up in a small town and keeping small town friends has helped us so much. Not only my small town folks, but also my Garrison / Freeland and Naughton / Pondelicek family and friends up here. I am not posting this for more money (believe me, we are off to a great start), but I have added it here for those that are not on Facebook. I don't like to leave anyone out! It is hard to ask for things and Don and I have been fortunate to have the financial support we need and assistance with kids, but as I have said before, this is hurting them just as much - especially because they are so far away and feel so helpless at times. <br />
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Also for those not on facebook, I have a new song, which I have also copied to here. It has been a big hit on Facebook with my friends that have listened to it, so it is below for you all non-facebookers as well!<br />
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Well, I hate to over do it so I'm off to bed in hopes that I feel well enough in the morning to attend church and the grocery store. <br />
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Love you all!<br />
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Amber<br />
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<a href="http://www.gofundme.com/6pd63c?pc=fb_p2">Click here to support Amber Garrison Naughton Travel Fund by Megan Jeremy Deckwww.gofundme.comSo many people have asked what they can do at this time to help Amber Garrison Naughton while she goes through her...</a><br />
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<a href="http://www.youtube.com/attribution_link?a=OpGBgOQ9TYE&u=%2Fwatch%3Fv%3DwRWZ1A-CbJA%26feature%3Dshare">Bomshel-Fight Like A Girl Lyricswww.youtube.com***I DO NOT OWN THIS SONG! NONE! ZIPPO!*** Fight Like A Girl BY!!! Bomshell I decided since it was a hard song to find i put it with lyrics. I am taking requ...</a>Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-71082166435422160242014-01-26T13:11:00.002-08:002014-01-26T13:11:55.587-08:00PET Results<i><b>"I am learning to trust the journey even when I do not understand it"</b></i><br />
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This was a quote I found today and I think it pretty much suits my current situation. I had my PET scan last Tuesday. If you remember from a year ago, I am always looking for signs. Well, Tuesday I got a positive sign after the scan. I had the day to myself thanks to my mother-in-law for watching Ryan since I was radioactive and had strict instructions not to hold him, hug him, swap spit with him, urinate on him, etc. So after the scan I decided to venture over to Walmart for some groceries. I am not a Walmart person, but we had a gift card from some Christmas returns so I figured I would use the card on groceries. As I was shopping, I ran into Pastor Dave from the Lutheran church I have joined. I am a new member to the church and most there do not know about the cancer, but he does. So we chatted for a bit and after I walked away, I was so giddy! It just felt right. I felt that this was my sign that everything was going to be A-Okay! Wednesday my parents came in to help with the kids and to keep my mind busy. That was very helpful since I do not do good waiting for a Christmas surprise, let alone waiting for sentencing. (I have decided that waiting for PET scan results must be what it is like for a convicted murderer to hear their prison sentence)<br />
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Don and I met with Dr. Phillips Friday evening. Note to self, make an early morning appointment going forward....Anyhow, she came in and informed us that my PET scan was not that different than my one in August, but there were some changes. My right breast was showing lit up, which it did not in August because I discovered the cancer was back pretty quickly. So I was expecting to hear this - also because that is where the pain is so this made sense. She then told us that there are 2 lymph nodes around my lungs that are showing cancer. She did say that the 2 small spots that they saw on my lungs back in August were not lit up, so it is safe to say that if that was cancer, the Xeloda wiped those out. Or it could just confirm that they are / were scar tissue from radiation. Next she informed us that there was also a "hot spot" on my left hip bone. Dr. Phillips said this spot is so small I would not know it was there by pain or any other symptoms. So that is under "watch", but was not determined to be cancer in my bones at this time. Don and I went over the actual scan and saw the spots she was speaking of, which I think was helpful to us to know exactly where she was talking about. I asked Dr. Phillips what this exactly means as far as my prognosis and if this is considered "bad news"- it is to me, but I wanted to know / hear from her, it could be worse. She explained that it is not in my liver, lungs, spleen or other organ so that is good and that there are plenty of other drugs out there for us to try. <br />
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We then discussed potential drugs for me to go to next. Xeloda was very easy for me. Not only could I tolerate it, I also was able to stay out of the hospital / cancer center as much as possible and I could hide the illness from outsiders. So she started by telling me, the convenience is now out the door as we move on and so is the slim to no side effects. Her and Dr. Nanda (Triple negative expert at the main University of Chicago Hospital) felt that a trial that has one open spot looked like the best option for me. The trial consists of 2 drugs by IV given weekly - Gemcitabine and Carboplatin. I have been on Carboplatin before and handled it fairly well minus the blood transfusion I needed after my first cycle. The third drug is an oral medicine which is the drug that is under a clinical trial. It is called Mifepristone. This is taken on day 1 and day 8 of each cycle. A cycle is 2 weeks on and 1 week off. So going to the hospital once a week for 2 weeks for the first 2 drugs and then a rest of 1 week. The IV drugs are known drugs for Stage 4 breast cancer and specifically Triple Negative. The oral medicine is under trial to find the safest dose when given with the other 2 drugs. It is an approved drug by the FDA, just is not proven to be a drug used for breast cancer. So my consenting to the trial, I will receive the oral drug, I just do not know the dosage amount that I will receive until I start. Sounds a bit scary, but she stated we can make adjustments if we need to so their plan is not to cause me to OD.<br />
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Obviously this is not the news we were hoping or praying for and I have sunken into a depression of some sort, but I have not given up. I'm sad because I can no longer shelter Justin from what is going on. I will lose my hair, which makes it obvious to him and everyone else that I see at play groups, church, Justin's school, the grocery store or even myself that I am sick. But mostly for Justin. Ryan is still little enough to hopefully not realize anything, but Justin gets it. So if you see him out and about, a smile, a hug or a sucker would be nice! We also have him seeing a social worker at school. Since this isn't my first bout with serious news, I keep reminding myself that the beginning is always the hardest part. There are so many unknowns with how much, how often, what do we need, what if this, what if that, etc. Then once I start going I get out of my funk and can usually keep up with the day to day. So my hope is this funk is short lived and I can get moving as soon as possible. <br />
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Tomorrow I should hear from the clinical trial coordinator to consent to the trial and will then hopefully hear when I can start. Some trials require a "wash out" period. This means being off of all drugs for a certain period before you start the trial. I'm hoping this is not the case and I can get this going, but if not, I will do my best to enjoy the next couple of weeks. I appreciate all of the kind words, cards, texts etc. It helps to keep going when you know you have so many caring supporters out there! As far as what we need - I do not know right now, I'm finding it hard enough to figure out dinner! I know we will need help with the kids and possibly meals on my crummy days with chemo, but until I start, I do not know when or if I will have crummy days so for now, keep your phone on:) <br />
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We can not thank you all enough for your support and prayers. Please keep them coming! <br />
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Love,<br />
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AmberAnonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com7tag:blogger.com,1999:blog-6554619991793904973.post-44901601184395523652014-01-13T10:41:00.000-08:002014-01-13T10:41:33.368-08:00SCANS! <span style="font-family: Arial, Helvetica, sans-serif;">The holidays have come and went and I think I am still catching up on things around here. Doesn't help that since I am home, I catch myself a lot saying "I will do that tomorrow". But all with a good reason why I didn't do it today....Justin was home due to the weather last week and then also due to a case of bronchitis for even longer when school did start back up Whitney has been here and was to leave last Tuesday but due to the weather she stayed until Wednesday. Thank goodness since Justin was sick. It was nice to have 2 of us here to keep the kids from each other. So far so good, Ryan has not gotten it. (Knock on wood)</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I know a lot of people around here did not particularly like the cold weather and blizzard conditions last week. I on the other hand, thought it was wonderful! I had no place to go so let it snow. I know if I worked I would have been just as angry as the rest of you that had to get out or worse yet, had to get their children out. But for me, It was extra time with Justin and extra time with Whitney! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">On the health front, I am still on Xeloda. I have finally discovered that I am not immune to the side effects of the drug. One was red feet and hands. This is my rest week on chemo and I think that is a good thing! Yesterday when walking I had some pain in my right foot and when I took my sock off I discovered that along my heel,the skin is cracked and in one area it was completely cut open. My hands are doing okay, although they tingle and around my cuticles they are peeling. So hopefully this week being off of chemo, it will be just enough time to heal before I start back up next Sunday.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I did see Dr. Phillips on Tuesday. I think I was extra emotional with the holidays being over and Whitney getting ready to leave. I cried through out my appointment. I couldn't mask the fear and anxiety I am experiencing with my pain. No one can seem to explain it or understand when I explain the feeling to them. I know I have had bad luck these past couple of years, but I don't think it has been that bad, that I have a cancer pain that no one can fix. I did visit plastics before Christmas and their recommendation was doing a surgery where they would graft skin off of my back and attach it to my breast area to allow for more space for my implant. They felt there was a 50/50 chance that my pain could be from my damaged skin from radiation. This risk I have known since I had my implants and there is not a dead line of when if you don't feel pain, you are considered in the safety zone. I didn't like their answer since 50/50 isn't huge odds and to undergo a surgery that may do nothing for me....yeah no thanks. So meeting with Dr. Phillips I asked what she thought about this and she explained she did not feel comfortable with me doing this. With skin grafts you are at risk of infection and even though I feel good, I am extra susceptible to infection and I would also have to stop chemo for some time to do this surgery. So that brought on the tears. Even though I had determined on my own the surgery was probably not for me, her saying it and not offering any further resolution to stopping my pain, plain pissed me off! So she came up with the plan to do another scan. It has been 6 months since my last one so it is time, but also to help my anxiety to make sure we are still on the right path as far as chemo goes. Of course this brings on more anxiety than I have originally had. So scans are scheduled for next Tuesday the 21st and an appointment with her is scheduled for next Friday, 1/24 at 4:20. So I ask for extra prayers throughout these next 2 weeks. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I am on edge. I feel like as scans approach you start to put your life on hold. So much weighs on the results. Will I be able to continue my plan to have Ryan involved in activities daily if I for some reason need to start a different chemo? Can I dye my hair or is that a waste of money? And from following another stage 4 breast cancer pal, "Can I continue to buy the green bananas". When I saw this I originally though oh how morbid, but it is the truth as I wait for the scan. I hate to go there and I know you all hate to read it ,but I have to prepare myself because my future rides on the scans. I can still control my mood, my mind, and emotions, but I can not take back what the scans could reveal. So mom and dad have graciously agreed to come see me next week. With the scans being Tuesday and no results to Friday, I need them here to keep me busy and to keep the kids busy. I don't know that I am the best mommy when I am waiting for test results. I kind of go into a daze and just go through the motions. So they will come in Wednesday night and stay until Sunday.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Lastly, I have started acupuncture! I did my first treatment on Saturday and I am in love! The lady I am seeing is so knowledgeable and spent a lot of time explaining things to me before sticking me with needles. I fell asleep during the treatment and slept better than I have in years. I have to say I will be having a twice a week affair with acupuncture! It is pricey, but if it can rid me of some of this pain or better yet, rid me of cancer, I will pay what I have to! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So if you can please please please keep me in your prayers these next few weeks. I could definitely use them. And please also pray for a little boy Mason Whitaker. He is the nephew to my friend Megan. He is 1 1/2 and was diagnosed with leukemia last week. He is being treated in St. Louis and is in great hands, but has started down a long road along with his family. They do have a blog under caringbridge.org under his first and last name or you can find their page on Facebook under Prayers for Mason. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Love to all!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Amber</span>Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com2tag:blogger.com,1999:blog-6554619991793904973.post-25288463519443797502013-12-20T11:50:00.001-08:002013-12-20T11:50:34.926-08:00BlessedBLESSED....<br />
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That is the one and only word that I can use right now to describe the feeling I have every morning when I wake up. While I usually wake up in agonizing pain, I am able to take some medicine and lay back down while the house is still quiet to let the pain medicine kick in before we start our daily routine. <br />
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The past two years December has been a hard month for me. Last year I was preparing for my surgery, which the anniversary of losing the cancerous beast living within me was December 6th. I remember last year my fear was something going wrong during the surgery or them finding more cancer than what was already expected. Once that was over, the next fear was will this be my last Christmas. Once the hustle and bustle of shopping, wrapping, hiding Elf on the Shelf, having my family here and working kicked in, that fear quickly passed. As the year went on that fear disappeared and only reappeared when I was preparing for doctor follow up appointments and of course scans.<br />
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This year I noticed my anxiety levels quickly shot up after Thanksgiving. Knowing my cancer is back and is considered non-curable, that fear of could this be my last Christmas is so real. I hope and pray several times a day that I get many many many more Christmases with my children and hopefully one day with their children. But since tomorrow is not promised to me, nor anyone for that matter, I am using cancer as a way to live like I am dying. (Great song too by Tim McGraw). Unlike his song, I do not plan to go sky diving or rocky mountain climbing, but I may ride a bull named Blue Manchu, I have loved deeper, spoke sweeter and I have given forgiveness I'd been denying. Other things that he failed to mention in his song that I have done this past month:<br />
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<li>Hiding Buddy the Elf daily so that I hear the giggles of my boys when they discover what mischief he has gotten into. </li>
<li>Decorated the Christmas tree and didn't get discouraged when the kids hung ornaments all in one location.</li>
<li>Put the manger together one too many times because the boys think it is a new toy. We have a "Little People" manger for them and the real one is kept away from their little curious hands.</li>
<li>Tuned in to the 93.9 and listened to Christmas music daily since the day after Thanksgiving and sang along.</li>
<li>Told people at the store, post office, library etc. Merry Christmas</li>
<li>Paid it forward in line at McDonalds for the car behind me. This made me nervous, but the price thank goodness didn't break our one income family bank.</li>
<li>Brought hot chocolate to the 3 teachers/aides at Justin's school who stand outside every morning making sure all the little munchkins get safely out of the cars and into school. </li>
<li>Talked to Justin about the meaning of Christmas and did the best I could to explain it to him.</li>
<li>Did a family tour around New Lenox and surrounding towns to look at Christmas lights.</li>
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I think I could go on and on. I made a list this year and tried to pack in as much fun as possible so that should this be my last Christmas, the kids will look back and remember all of the good times and Don can make this a yearly tradition. I am confident though that my time is not up and I will get to do these traditions for the next at least 20 years with my boys.</div>
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Please don't let my mind set scare you off. I am not negative nor have I given up. I have tons of hope and faith that my medicine will continue to work and there will be a cure for me soon or God himself will heal me. I follow many blogs of women who are struggling with terminal cancer just like me. While reading these blogs break my heart since some have been struggling awhile longer than me, they also give me the strength I need to go on daily and to continue to be strong. It is so weird if you think about it to read blogs of women I do not know and probably never will. I feel like I do know them and little do they know, they are helping me. I hope they read my blog and I can help them too.</div>
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Most who do see me or look at pictures on Facebook. I do not fit the image of a cancer patient like I did last year. I have my hair, I'm pretty fit (weak, but healthier looking than I have looked in years), I can carry my 1 1/2 year old while he wiggles out of my arms kicking and screaming like an average mother. I am able to keep up with the house work, cook dinner and remember important dates. It is like I do not have cancer! Like it is just a ploy to get some attention. I sure wish that was the case. I hurt daily. My regiment of Advil or Norco rotated every 4-5 hours to stay ahead of the pain is annoying! Especially if I miss a dose and the pain sets in. I'm one angry Bitch (Pardon my language, but I am) I hope I can keep fooling all of you. I don't want to look sick. I want to continue to walk through the store and see strangers rushing to get things, pushing me out of the way, stealing my parking spot because they want to be closer to the entrance. It is entertaining to me to watch them get so annoyed by things that don't matter. There are several times I just want to stun them and say I have terminal cancer. But I don't, instead I smile and hope that my smile is contagious and they change their ways and slow down.</div>
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My request this season is for all of you that follow my blog to reflect on the past year and be thankful for your health, your family, for your home, for your job, your school. Whatever it is you have that you easily take for granted. Like I mentioned, tomorrow is not promised to any of us....Cancer or no cancer. Make this the best Christmas yet. It isn't about the gifts under the tree or the perfectly decorated Christmas cookies. It is about living your life like you are dying. Giggling with your children, signing loudly off key to Christmas songs, Dance like no one is watching (Ryan is good at this one and if you ask Whitney, I may be coming in a close 2nd), making someone else's day, give a dollar to the homeless. Smile and stop being angry. Just slow down! </div>
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I wish you all a very Merry Christmas! Whitney is here for a month and I and the boys are enjoying her company. My parents are traveling in today and tomorrow (prayers for a safe arrival to and from NC). The only thing missing is Jess and her family, but we will Skype<span style="text-align: center;"> with them and make sure we feel like we are all together! More to come after Christmas on the health front. For now, I'm pretending like nothing is wrong and just remembering while I hate the word cancer, it has taught me so much!</span></div>
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Love to all!</div>
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Amber </div>
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Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com2tag:blogger.com,1999:blog-6554619991793904973.post-50803206810425306752013-11-27T12:23:00.000-08:002013-11-27T12:24:33.848-08:00ThanksgivingI met with Dr. Phillips yesterday at the end of the day. I hate Dr. visit days! I started out in a great mood, who couldn't be! I'm home with my 2 cuties just playing, watching movies, cuddling, etc. As I would laugh or do something goofy, my smile would quickly fade as I remembered that I had an appointment today. My heart was beating in my throat a majority of the day. I had not noticed much change and my pain was still pretty strong that I feared all day Dr. Phillips would want to do some scans. Although scans are not a bad thing, that is they aren't bad if you get the results that you want. But with them comes A LOT of extra anxiety, tears and bad moods. I thought all day how I was going to try to stall this until after the holidays. I mean yes, I want to know right away if the treatment isn't working and we need to move on, but to be honest, I do not think I or my family can endure anything more this year. Even if the cancer has not spread, it is still there and I just don't think I can do it. <br />
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Turns out at my appointment Dr. Phillips felt that my lymph node was smaller (I do agree with this) and that the skin looked like it has completely stopped spreading! What great news! She explained to Don and I why she felt the skin / chest wall has stopped spreading and I agree after she explained it to us. If you want a full understanding of this, it will require a visual so call me if you need more detail! HA! Before she took a look, I explained again to her what the pain feels like. In case you forget, it feels like my skin is stretched so bad that when I touch it, it is hot, painful and feels like it is burned similiar to a sun burn.Naughton. <br />
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My final hypothesis was that if we removed the implant or put in a smaller one (not really wanting to do this, but will for comfort) maybe the skin could breath more. She first said that wouldn't work and gave me the look like aw you poor thing. Well after she looked she agreed that my skin is just too tight on the right side. Her request was to give the chemo a couple more cycles to see if the discomfort and pain subsides and if it does not, would like me to consult with my plastic surgeon. I have decided to get a head start and meet with him before and just get his opinion. You can now call me Dr. <br />
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That is it on cancer front. In other news, Don and I went to St. Louis to watch the Bears lose. It was a great trip. We went with a group of friends from college. Although all but 2 of them live near us and we see frequently, it was nice to just get away. It was also nice for Don and I to get away and breath and kind of sort of act like we are a normal couple without a million and one things going on in our life. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNe4M0kiXxWCSoywmVrdbpxhQwz9xoR5oM87G-fZAqQcvckTqVUFJ2dq90HXbFx99S8b0r37Rkd13IIasjh-b-Y0qkPXDS8BOkyOmn4E8fD0pbBVen4TiQ1lXMU8Cwrkf177nQIivP8M/s1600/IMG_2658.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNe4M0kiXxWCSoywmVrdbpxhQwz9xoR5oM87G-fZAqQcvckTqVUFJ2dq90HXbFx99S8b0r37Rkd13IIasjh-b-Y0qkPXDS8BOkyOmn4E8fD0pbBVen4TiQ1lXMU8Cwrkf177nQIivP8M/s320/IMG_2658.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bears Game</td></tr>
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Justin has been off all week for Thanksgiving break. It is really nice to have him home with me. Don and I met with his teacher on Monday and he is doing great in school! Ryan is talking more and more and is so busy! My goodness! If you have indoor activity ideas, we will take them! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipD3D9O40nuCSvxSEfVJCahavMMoGXwvnxrdKv_jwXcm5YbYSfGDnCWUhI25_F9TWzmvBAlCqsRO0m4PAZ20bzgBc0JsSjeIsjqryitPjK-z3_soZkzz-4CT6VCo6qNrKtHX93yxQNe0M/s1600/IMG_2731.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="193" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipD3D9O40nuCSvxSEfVJCahavMMoGXwvnxrdKv_jwXcm5YbYSfGDnCWUhI25_F9TWzmvBAlCqsRO0m4PAZ20bzgBc0JsSjeIsjqryitPjK-z3_soZkzz-4CT6VCo6qNrKtHX93yxQNe0M/s320/IMG_2731.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Play Date with Cousin Paige</td></tr>
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My brother and sister in law welcomed a new baby girl - Emma Grace on November 12th. She shares the day with Don and I as it is our anniversary! And if that isn't enough, she gets a cool birthday - 11-12-13. She is a doll and her big sister Paige is doing a great job taking care of her. It will be fun to have a baby around for the holidays!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx7X_NqgQ93gLLxTRbNKvD3GYtGJ0tGHKp8Z0TXX2897s9wMs0sxjdgRjBvWGfUz__DFWHLedZ0RCE2GZwkb1iosW10ozfL2hmg2NTkTPVx7AN7QUawePzMsS7yczMCBXbuSHd5IH-Z-w/s1600/IMG_2671.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx7X_NqgQ93gLLxTRbNKvD3GYtGJ0tGHKp8Z0TXX2897s9wMs0sxjdgRjBvWGfUz__DFWHLedZ0RCE2GZwkb1iosW10ozfL2hmg2NTkTPVx7AN7QUawePzMsS7yczMCBXbuSHd5IH-Z-w/s320/IMG_2671.jpg" width="198" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnxtZYoMoK24B_vLUqT1bNnUih65hH_CGsiqDB-YRuMd5W9rPEGutryQjxs39UzIE9r9o2mch0igDLRSHfco5FwqhiGWFVIBc_XPXqG5j1oXw4tkk7eKWi_-jJNhP8STaPIfkcv2S90rs/s1600/IMG_2677.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnxtZYoMoK24B_vLUqT1bNnUih65hH_CGsiqDB-YRuMd5W9rPEGutryQjxs39UzIE9r9o2mch0igDLRSHfco5FwqhiGWFVIBc_XPXqG5j1oXw4tkk7eKWi_-jJNhP8STaPIfkcv2S90rs/s320/IMG_2677.jpg" width="240" /></a><br />
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I can not believe tomorrow is Thanksgiving! This year has flown by. I will say for the most part, this year is right up there with last year for being pretty crappy. But with all of the crappiness, we have had a lot of happiness! Wow, I might coin that phrase. It has been tough, but if you don't look at cancer, it has been pretty cool. I am thankful for all of my family and friends this year. That is usually what I say anyways when we go around the table at Thanksgiving and say what we are thankful for, but I can't think of anything else that tops family and friends. The cards, the gifts, the phone calls, the making strides walk, we appreciate it all and I don't know how to thank each of you personally. It is so easy to sit and cry and feel sorry for myself and my family, but then at the right moment, the phone rings, an email comes through or recently chocolate covered strawberries. It is like you all just know when and what I need! We are so lucky!<br />
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Please enjoy your Thanksgiving day with your family! Make memories, laugh and EAT!!Anonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com0tag:blogger.com,1999:blog-6554619991793904973.post-73045814191242645012013-11-04T09:57:00.000-08:002013-11-04T09:57:40.967-08:00Another DayAn update on my Dr. appointment last Tuesday. I met with Dr. Phillips last Tuesday. She was not happy to hear that I am still having pain in the chest area. Her thoughts are that as the chemo works, the pain should subside. I think, she did not say, that she is getting concerned that the chemo isn't doing what it is supposed to be doing. That of course is my brain at work. I did not ask and she did not tell. Some appointments I am strong enough to ask the hard questions, Tuesday I could not. She has asked at every visit if I wanted pain medication and I have always rejected it. I don't enjoy being in pain what so ever. In fact, when the pain comes on, it destroys me until the Advil or Tylenol kick in. I get quiet, I can't really eat, I get irritated easily and if it is at night, I can't sleep. All of this information made Dr. Phillips prescribe me a low dose pain medicine. She thinks it will help with just my well being. I agree with her, but I hate to give up on the over the counter meds. I feel like going to the stronger stuff is losing a little bit of control of this tough game of cancer. I know this is not a game, but to me I have to play it somewhat like it is. Taking more medicine is letting cancer know it has gotten to me. I hate that! So I am now taking a pain med at night and during the day I'm sticking to my over the counter meds. I realized yesterday that I really was not taking Advil during the day. Interesting....maybe the cancer is getting the point. Then last night, another pain attack. Right when it was time to sit down for dinner. It is just so frustrating. There could be multiple causes: cancer, nerve damage, nerve pain, lymphadema, etc. I could go on and on. I just wish we knew exactly what it was. Pray that it will go away. It is no fun!! It makes my mind wonder to places that I don't like.<br />
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I have finally gotten involved with a group that I hope helps me and other young breast cancer survivors. I am co-organizer for a group called "YSC" - Young survivor coalition -for the south suburbs of Chicago. If you get a minute, check out their website. It is for women that were diagnosed with breast cancer in their 40's or younger. I was drawn to this group from another breast cancer survivor that I started following this summer. Unfortunately, her journey ended a month ago leaving behind a 6 year old little boy. She co-organized the group in Champaign IL. My first meeting will be held on November 20th. What I like about this is depending on the other women that join, I can plan events that meet all of our needs. I'm excited for this first meeting so I can understand what the other members needs are. I am sure I will not be surprised that a majority of us need or want the same things. So far I have 8 members and it was only opened 2 weeks ago. If you know a young women who had or has breast cancer, please direct them to this group. If they aren't in the South suburbs, they can check on the website if there is a group near them. My goal is to make this a positive place for young women. If you remember, I attended a support group initially when I was diagnosed. It was a great group of women, but some meetings I left there more in fear. The looks on the women's faces when I would say my age or my children's ages. I knew then I needed to be with women like me. Young, with kids, or no kids, married, or not married. But going through the same struggles, fears and changes a young women faces with breast cancer.<br />
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I am meeting with a young breast cancer survivor, that I was fortunate to meet during radiation, for breakfast later this week who also works for American Cancer Society. She has a few ideas up her sleeve for discussions for the support group and also ideas of where and how to network this group. Then on Friday, I am meeting with the clinical trial coordinator at the University of Chicago so she can understand the group and help me network as well. With the HIPPA laws it is hard for me to do this on my own and fortunately, going to the doctor so often, I have met wonderful people that are ready and willing to help me. So wish me luck on this fun journey! <br />
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Other than the group, I am just trying to stay busy with Ryan. He is learning so much and is talking up a storm. I still struggle with if he is getting everything that Justin did with Justin attending day care daily and getting the social skills from being around other small children. But I will say when he does something new I am so proud, because I know he probably has learned that for me. As long as it is positive stuff, I am proud to take credit, but if he does or says something bad....I didn't teach him that and I have no idea where he got it from:) I also enjoy being there for Justin before and after school to work on his homework and read with him. He is excellent at math and most of you know, that was not my strong point so it is fun!<br />
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Although that sounds good, I'm sugar coating it a little....It is also tough for me! Tough to just find my place, tough to be in pain, tough to realize my life is forever changed! I can not get through the day without crying. I try not to look back at what our life was 2 years ago because that time did not include my little Ry guy. But I look at what we had -health, happiness, good careers, happy worry free Justin. Just makes me realize how much everyone, including myself, needs to count their blessings. You never know when or what could happen. You just have to enjoy life! I am doing my best to do so. And I have to say always remember that everyone has their story so be kind! Although my side effects on this drug are minimal - I'm keeping my hair, I'm not pale as a ghost, my blood counts are not in the toilet. I still have a lot going on with my life. In fact, this fight is way harder than the last time. The stakes are higher. My fight is not to attack a tumor and move on with my life. my fight is to prevent my cancer from spreading any further in my body. Prevent it from taking me away from my kids and my family way too soon. So remember that, not just with me, but for everyone. Everyone has their own battles and even though some are not noticeable, they have something. Don't hold grudges, don't be too proud to say you are sorry or you were wrong. Pick up the phone and call someone to tell them hello, say you love them! Okay enough of the mushy stuff but hopefully you get the point. <br />
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So to end, I please ask that you continue to pray for me and my family. I need some strength, I need some energy, I need positive thoughts that this chemo is working! Thank you for those that have helped out these past couple of weeks.<br />
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Love always!<br />
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AmberAnonymoushttp://www.blogger.com/profile/11038622091881225712noreply@blogger.com3