"I am learning to trust the journey even when I do not understand it"
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)
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.
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.
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.
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:)
We can not thank you all enough for your support and prayers. Please keep them coming!
Love,
Amber
Sunday, January 26, 2014
Monday, January 13, 2014
SCANS!
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)
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!
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.
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.
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.
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!
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.
Love to all!
Amber
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!
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.
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.
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.
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!
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.
Love to all!
Amber
Friday, December 20, 2013
Blessed
BLESSED....
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.
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.
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:
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.
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.
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:
- Hiding Buddy the Elf daily so that I hear the giggles of my boys when they discover what mischief he has gotten into.
- Decorated the Christmas tree and didn't get discouraged when the kids hung ornaments all in one location.
- 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.
- Tuned in to the 93.9 and listened to Christmas music daily since the day after Thanksgiving and sang along.
- Told people at the store, post office, library etc. Merry Christmas
- 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.
- 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.
- Talked to Justin about the meaning of Christmas and did the best I could to explain it to him.
- Did a family tour around New Lenox and surrounding towns to look at Christmas lights.
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.
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.
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.
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!
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 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!
Love to all!
Amber
Wednesday, November 27, 2013
Thanksgiving
I 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.
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.
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.
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.
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!
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!
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!
Please enjoy your Thanksgiving day with your family! Make memories, laugh and EAT!!
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.
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.
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.
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| Bears Game |
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| Play Date with Cousin Paige |
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!
Please enjoy your Thanksgiving day with your family! Make memories, laugh and EAT!!
Monday, November 4, 2013
Another Day
An 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.
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.
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!
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!
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.
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.
Love always!
Amber
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.
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!
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!
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.
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.
Love always!
Amber
Wednesday, October 23, 2013
Making Strides Walk
Thank you to all who walked and donated to the American Cancer Society Making Strides Against Breast cancer walk! Some may not have heard, but my team raised the most money for this particular walk (approximately $7,500.00) That is awesome! I had walkers anywhere from old co-workers, the kids daycare, friends from high school, parent's friends, aunts, uncles, cousins, local friends and people I have not seen since I was a little kid that gave me their Sunday to show their support. My guests ranged from Nevada, New Jersey, North Carolina, Illinois, Indiana, Nebraska, South Dakota, Tennessee , St. Louis to Georgia. If I forgot, I am sorry. This was the reminder I needed that I have support all over! If I did not personally thank you for coming, I am so sorry! Not to mention, the other close friends and relatives that are also breast cancer survivors: Christine, Sarah and Aunt Marilyn. So many people and not enough time for everyone! But please know that my family and I are so grateful and appreciative of the support. It will give me that extra boost to keep fighting! Not like I would give up, but you know somedays, it does feel like the odds are against me!
My sisters and parents were here for the week and it was great having company. Justin and Ryan do not see their cousins often enough so spending time with them is precious. Justin had school but played every night with his cousins. The rest of us enjoyed the pumpkin patch, movies, walks through the Forrest preserves and just visiting. My house was rather quiet and depressing Monday afternoon. What would the week be if we didn't also pass around the flu bug. Yes, a majority of us got it, but luckily it ran its course fairly quickly. The latest victims were Don and I. I am feeling a little better today, but not 100% (whatever that is anyways).
On the cancer front, I am on my week off of Xeloda. I will start back up on Sunday for 2 weeks straight. I will see Dr. Phillips next Tuesday for blood work and to do a visual look. I have noticed the skin part continues to fade, but is still there and I want it gone! I am told to be patient and to remember it will never be "gone" so just be happy that it is showing signs of improvement and that it is not getting worse. The pain has subsided some so that has to be good news too, right? The bad news I received this week is that my tumor tests have come back for the 2 clinical trials that University of Chicago had for Triple Negative Breast Cancer. Remember one called for the tumor to suppress something and 60% of tumors do. The other needed to suppress something else and only 10% of tumors do. Well a smack in the face, mine does not suppress either things that they were looking for. The good side is we were not forced to make a decision as to whether we stick with Xeloda that seems to be working or do a trial. The bad side is if Xeloda stops working, which it eventually will, we have 2 less drugs that would work in helping to extend my time. While we are reminded there are still several drugs they can try, these 2 will not be beneficial to me. Yes, I have to be different all the time and put myself in situations that are hard to get out of. I have been that way my whole life so why change now?
Again I scratch my head at this Triple Negative. My Doctor has explained it to us that helps me understand it a little better. If the tumor does not suppress a hormone receptor, it is thrown into this Triple Negative category. There are several sub-types of triple negative. They just have not figured out all of these sub-types and who should get what given the tumor information. That is so frustrating to me since I know they will get this figured out eventually, I just hope it is time to be beneficial to me!! Yes, that may sound a little selfish, but I do. In the mean time, I want to do whatever I can to help doctors....So I will continue to allow them to test my tumor and if it comes to it, apply for clinical trials to help me or other triple negative patients.
Kids are doing well. Justin is loving school and Ryan and I are trying to get into a routine without work. Having guests here helped and then being sick has held us back. Hopefully next week we can start a routine of library, museums, gym time and anything else that we can think of. It is nice to have a lazy day inside, especially with the cold weather approaching, but we have to stay busy!!
We appreciate the continued prayers and will update soon!
Love,
Amber
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| My group of walkers! |
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| I was asked to start the race by cutting the ribbon |
Again I scratch my head at this Triple Negative. My Doctor has explained it to us that helps me understand it a little better. If the tumor does not suppress a hormone receptor, it is thrown into this Triple Negative category. There are several sub-types of triple negative. They just have not figured out all of these sub-types and who should get what given the tumor information. That is so frustrating to me since I know they will get this figured out eventually, I just hope it is time to be beneficial to me!! Yes, that may sound a little selfish, but I do. In the mean time, I want to do whatever I can to help doctors....So I will continue to allow them to test my tumor and if it comes to it, apply for clinical trials to help me or other triple negative patients.
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| Justin adding my name to the survivor wall |
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| My smallest supporter - "I wear pink for my hero, my mom" |
Kids are doing well. Justin is loving school and Ryan and I are trying to get into a routine without work. Having guests here helped and then being sick has held us back. Hopefully next week we can start a routine of library, museums, gym time and anything else that we can think of. It is nice to have a lazy day inside, especially with the cold weather approaching, but we have to stay busy!!
We appreciate the continued prayers and will update soon!
Love,
Amber
Friday, October 11, 2013
The New Normal
Oh what a week! Actually last 2 weeks. Start with the fun stuff! Lisa and I had a blast at the color run. I would suggest this run to anyone if you like to have fun. It is not competitive and it is a great 1st 5K run/walk! Of course being with the right people for the run is also important. If you can't have fun, this is surely not for you!
In other news, I am back to the best job on earth....Being a mom! Yes, that is correct! I started and have left a job within 3 days! While the hours and location were wonderful, the people and atmosphere were not. I knew Porsche would be hard to match, but this was not even close. Not all of my years at Porsche were rosy either. I was put through hell there by a nameless person for several years, but I kept my head up and did what I was told and out-lived her and that is when the heavens opened up and I realized wow, working there was great, it was working for someone that was horrible. Working for this horrible nameless person I hate to admit but I learned so much....I learned how not to treat people. And with that my friends, that is how I was successful at my previous job at Porsche. Now back to this new job....It was toxic and negative. Had I not made a promise that I would never work that way again and maybe had I not had a dangerous cancer walking around with me, I may of tried to out-live it again. But life is too short and precious to be scared and miserable at your place of employment. I think I could write a book on productivity in the work place when working with evil. In my 11 years since college, I really think I could top the cake! So Thursday morning I woke up and decided that this was not the place for me.
For now, I have decided to explore other avenues that are open to me due to my diagnoses for a source of income. Hoping that this comes through for me, I plan to use my time wisely and raise my children the best I can, volunteer at the school as often as I am able, go to the local cancer center and volunteer my knowledge and kind heart to someone that needs a pick me up and to just live my life how I want to live my life. I could later decide I want to go back to the work force if I choose. Wish me luck on the income side of this so I can make the rest happen.
So this post may sound like it was an easy decision to make to quit the job and to stay home and do this. It was not. In fact, part of me feels like I kind of hit rock bottom. I wish it was due to drinking or something that I could manage to make go away, but it isn't....Although I had made that promise to myself to not work in a negative atmosphere, I struggled with not going back. See I am a hard worker. I learn something and don't stop. I strive to do the best to earn recognition for my work even if it isn't monetary because believe me, it isn't always appreciated with money, but that was okay. I am one of those that kind of looked forward to work on a Monday morning and what the week had in store for me. I liked the routine of kids up, fed, school, work, home, dinner, bath and bed. Wake up and do it again. As sick as it may sound, it was more of a challenge for me last year after I was diagnosed to see how I could handle the day to day with cancer: chemo, kids, work, blood work, etc. I mean it wasn't what I had dreamt or asked for, but challenge was accepted and I felt that I handled it the best I could and saw people shake their head at my strength and courage. That was like gas to me, the more people were amazed, the more I tried to take on. Not until I was home this summer did I realize how tired I was. That was okay, that got me through my first fight with cancer.
This time after I was diagnosed I was so scared. Scared because I was not working. What would keep me busy and my mind off of being sick? What if the treatments beat me down and I want to take a nap. I thought being home it will be easy to fall into a trap of tiredness and I could see the cancer consuming my days. That scared me. So I jumped into the first thing I found. After accepting the job and learning around the same time that I could get other income assistance because of my diagnoses, I struggled with what was right. Was it right to get back to the grind of a routine or was it right to be home and spend time with my kids and concentrate on me. I was getting mixed opinions from people on this. Finally I decided that work was best and I jumped in. As this past Monday approached I was starting to get excited but also scared. I knew Monday morning this was probably not going to work. But you know what, it was the normalcy that makes us all comfortable. The normalcy to say if Amber is working, she must be okay. She must not be in pain, she must not feel sick. She is doing well. I liked that. The last I want is a sympathetic look. I want people to accept me as Amber 2 years ago and I want things to be normal. Well on Thursday morning I let myself live in the true reality. Things are not normal and I am not okay all the time and that is okay. I am sad, scared and exhausted a majority of the time. But rather then giving into these fears and doing the old normal, I have to find the new normal.
I envision my new normal to be making sure that I am fighting cancer the best way possible by staying up to date on trials, drugs and just health, taking care of my family, making someone elses cancer experience easier and helping out at Justin's school. This list could probably go on and on. I have to do what I want to do and stop worrying about what others think if I am not being the old Amber. I am a new person and this is now our life. I know in my heart this is the right decision for now. It does not have to be forever, but for now, I need to do this.
So wish me luck on this new journey. I thank you for the continued prayers. Can't wait to see a lot of you next weekend. If you are walking, remember I have rented space at Charlestons Bar and Grill after the walk for lunch and drinks for the Bears game.
Love to all!
Amber
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