Tuesday, December 2, 2014

It 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.

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.

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.

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.

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.

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.

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.)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

 "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.

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.

A visitation will be held at Lawn Funeral Home on Friday, December 5 from 3-8pm.
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.

Lawn Funeral Home: 17909 S. 94th Ave. Tinley Park, IL 60487
Peace Lutheran Church: 1900 E Lincoln Hwy, New Lenox, IL 60451

Wednesday, November 12, 2014

It's Me

October 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Love to all!!


P.S. The blog will not spell check so bare with me because I'm typing with a numb right hand!

Friday, September 19, 2014

Pitch Perfect Anyone?d

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 youWinking 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 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!



Wednesday, September 10, 2014

Hanging In There

Well 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.

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.

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.

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.

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!

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!

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.

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.

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.

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!



Thursday, July 17, 2014

Home Sweet Home-Not all Sweet

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.  

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.

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.  

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.

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.

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.  

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.



Tuesday, July 15, 2014

Sorry This is a Long One

Good 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.

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.

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.

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.

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!

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.

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!

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!

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.

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.

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.


Thursday, June 19, 2014

2 Year Cancerversary

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:)))  

 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. 

 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.  

 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.  

 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.  

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 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.  

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)

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! 

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 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.

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 considering I didn't get the right meds 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!  

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.

Love Always, 


Sunday, June 8, 2014

Sunday Funday

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   alone.  So wish us luck!  

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.  

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 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.  

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.  

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.  

Enjoy your week ad pray for me and everyone else going through a hard time.



Friday, May 30, 2014

New Meds All Around

Thank 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.

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.

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….

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.

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.

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!

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.

Love to all!  Have a great weekend.


Friday, May 16, 2014

Home Sweet Home

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.

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. 

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.  

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.  

So wish us luck!  Have a great weekend!