I created a Facebook group last night called Follicular Lymphoma Stem Cell Transplant Patients. I thought it might be a good idea to create a specific group for stem cell transplant patients to discuss experiences with each other and others who are anticipating having one. I know that when I went through it, there were no Facebook groups or even many blogs about it. It really helps to read others stories and know that there is hope and that we survived!
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As I get older, I get worse and worse at figuring out technology. I am only 30 but I am not fond of all of these app updates. I use the weebly app and I can barely figure out how to use it. If I post the link anymore, it shows up with this random picture of me from one of my posts. And it is not a flattering picture- it’s a reallll close up. If anyone knows how I can change this - please let me know! I know I have mentioned my muscle spasms and fatigue before but I don’t think I have talked about how it is affecting my subcutaneous fat. My stomach had been hard and lumpy and I kept asking my regular doctors what it was. They had no clue. My stem cell transplant doctor knew right away and let me know that it was definitely GVHD. Yes, I did have two children but my stomach did not start looking like this until my youngest was about five years old. If you gently rub your hand across my belly, it feels lumpy. If you push, you can feel how hard the whole thing is. This picture was taken today, after 2 months of using imbruvica. I can say that it is starting to break up a little bit so that is good. I told my doctor that I had thought that I lost weight and he said it was definitely a possibility due to all the edema in that area. Gvhd has also caused me to have skin discoloration. My primary care doctor thought it was yeast. My skin biopsy was sent over to YALE and they said it was eczema. Two creams later and no change. I have not really seen much change to it after being on the imbruvica but my doctor warned me it could take months and months for the discoloration to start going away. People are going to be seeing a lot more of this now that it’s summer time! Actually now that I think about it, I think the imbruvica has started to work a little bit because it doesn’t seem to be as prominent in my arm pits anymore. It does remain under my chest area though.
I also wanted to vent today. I am on leave from work due to the disabling muscle cramps I get. I get them everyday. It’s like a Charlie horse but can happen in any part of my body. It happens mostly in my back and hands but does happen other places frequently as well. I would have to say the worst place to get one is my neck. Anything can trigger them- from stretching to sitting, rolling over while I’m sleeping or twisting the wrong way when getting into my car. When I told someone today that I couldn’t go back to work yet because of these muscle problems their response was, “I have muscle spasms everyday too and I still work”. This is not the first time this has happened to me - a friend of mine had said “my back hurts too and I still work”. I feel like it’s minimalizing what I actually go through everyday. I don’t think back pain is the same thing as what I have. I don’t think someone’s muscle spasms in their hip are the same thing as muscle cramps everywhere in your body. Not to mention all of the chemo I have been through and the mental anguish (ptsd) of being diagnosed with an “incurable” cancer right after my 22nd birthday. Most people would be dead if they had to go through what I went through and I don’t think it’s fair for people to assume I am just fine all of a sudden. It is a struggle everyday! I was contemplating posting a passive aggressive Facebook post and including the pictures I put on this blog - kind of as proof that my new immune system is attacking me. But I decided to post here instead to people who actually have a clue what it’s like to go through this. Maybe the pictures will even help someone with diagnosis one day. I do have hope that the imbruvica will work and I will feel better eventually. But that day is not today and I wish people would leave their comments to themselves and let people heal in peace. I am not trying to have a pain competition with people- what I have gone through and what I deal with on a daily basis is hard. It does not deserve to be minimalized. Rant over. Wow - haven't written in over a year. I'm still here - alive and well (for the most part). I had my annual scan last month which was three years post transplant. My doctor called me a week later and said there was some uptake in my throat area but probably shouldn't worry about it. He said its common to light up if you have recently had a cold. He also said my spleen was a tad larger than last year therefore they want to re-scan me in three months to be super careful. He said not to worry but obviously I do. It is surreal to live three years "in remission" after being diagnosed with an "incurable" cancer when I was 22. I turn 30 this year.
This whole ordeal leaves me with a significant amount of PTSD. It's hard to manage being a mother, wife and working. I am still broke from being on disability for so many years and all the medical expenses. Life is stressful but at least I am alive. I also have muscles that spasm and cramp often. The doctor says it should go away 3-5 years post transplant. I hope so! I see so many doctors to try to alleviate the pain. I just wish my body felt normal. I know they always said you would have a new normal but I never believed it. I did relatively well through all the chemo but now think that long term my body is tired and achy. I really need to exercise but every time I stretch, my muscles spasm. Vicious circle. Overall, I would encourage anyone in my situation to do the stem cell transplant. Pre-transplant I had never felt like I could live a normal life. In and out of somewhat remission was another vicious cycle. Every time I was in the somewhat remission, I constantly worried about it coming back. It was always in the back of my mind because this disease does go in and out of remission until no chemo options are left. I felt like I could never plan for the future and was always planning for what would happen if I died. It was very sad. I made a will at age 25. I wrote my kids notes and recorded my voice. I couldn't work. The transplant takes away those constant worries. There is always a worry that my cancer will come back or I will get another but it is no longer constant. I truly believe that once you get this cancer it is only a matter of time before you exhaust all of your options. This is the best chance for a cure. If anyone has any questions about anything I've gone through - please don't hesitate to ask. I made this blog because I searched for similar stories to my own and couldn't find any. There wasn't much for follicular lymphoma at all. I always wanted to find someone who went through this and was still alive. Please know that there is hope and you can live. It has almost been two full years since my transplant. I feel completely different than I did two years ago and one year ago. Two years ago, I was scared but had faith the transplant would put me into remission. It seemed to work and I was getting stir crazy after being on disability for four and a half years. I started looking for jobs 7-8 months after my transplant. I felt like I could conquer the world and nothing would ever get to me because my "incurable" cancer had been cured. Every morning going to work I was grateful to be alive. About one year post transplant, the graft v host began. As I have written, it affected my muscles, energy, eyes, sometimes skin. I went back on immune suppressants and prednisone. That was an emotional roller coaster. The prednisone and pain killers make me emotional. I have been anxious and overwhelmed since June of 2015. Sitting at a desk makes my muscles worse. My doctor tells me to exercise but whenever I try, I get muscle spasms. My immune system is still weak so the winter sicknesses have been getting me. I feel guilty that I don't feel well. It affects my work attendance and activities I can do with my children. Whenever I get sick, it brings back all the inadequate feelings I had when I had cancer. I don't know if it's the graft v host or the medicine, but I feel worse than I did when I had cancer. Not when it was aggressive or when I was having salvage chemotherapy but a general shitty feeling at all times. I am obviously glad that I did do go through with the transplant, but I 100% regret going back to work 9 months after my transplant. I was not healed physically or emotionally. Now I feel anxious and weak at all times. I hope it gets better soon. I feel so unhealthy like I have no time to eat right or work out. I hope I feel better soon. I want to work part time instead. I did not complain much for all the years I had cancer but now it is all coming to the surface. I thought my feelings avoidance strategy worked great during the time but now it's all coming out. My doctor says I won't feel like this forever and I sure hope so. I was blessed with a second chance and I need to start enjoying it. I also feel like when I had cancer, I had a better focus on what was really important in life and what mattered. And now that I am back in the "corporate world" I feel like I am getting further away. I would still recommend getting the transplant if your cancer aggressively comes back. I guess I am just traumatized from the whole ordeal. 20% of my life has been spent dealing with this. If anyone has any questions about anything please feel free to reach out to me. I am usually in a better mood and more positive but I had to get out this dark side. It's all a part of the journey. I have not posted a picture of my hair yet. I used to have the straightest hair- my entire life. If I tried to curl it, it would just fall down. Now it is curly and out of control. It's fun though. For the past month the swelling has come and my muscles and bones have hurt and it has been horrible. I was also very tired and just wanted to sleep all the time. My gvhd is inflaming all of my muscles so my doctor had me go back on tacrolimus. I was on it for two weeks because we wanted to avoid prednisone because it's bad to be on for a long time and it was giving me acne last time. It was not working fast enough and I was miserable so he had me go back on prednisone. I am already starting to feel better. My gums are also receding. I hope the steroids help with that too. My hair is getting longer but it's crazy & curly. I had my one year check last week. The week before that I had noticed my arms/hands/lower legs/ankles/feet were swollen. I was scared I had a blood clot but didn't. I went to my doctor in Boston and he said that it was probably a little graft v host because I was blotchy and my eyes hurt / are dry and my mouth feels scratchy. He put me on prednisone. I hope I don't have to go back on immune suppressants. My scan looked clear and my respiratory test was good. It's my one year transplant anniversary! I am doing good. I will have my scans and see the doctor in two weeks. Will update then. I am doing good and have been working at my new job for a month. I like it. I think I have a little graft v host but that is good. It is not confirmed though. I think I have dry eyes where they don't produce enough tear like substances so it's goopy instead. The worst part is that I can't wear contacts bc the goop gets in between and it clouds my vision. It's annoying but not too disruptive to my life. Also the inside of my mouth feels a little scratchy but my doctor said it looked fine at my last check up. I go again at the end of this month. I am so close to the one year post transplant! Happy & healthy holidays! I'm doing good! Got my baby shots (vaccinations) and I started a new job on Monday. To new beginnings !! Rebirth |