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.
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.