Today I am 258 days old. Totally crazy if you ask me. It still amazes me that there is someone else's DNA in my body and their stem cells are saving my life.
So how have things been?
Well things have been going pretty well. The recovery process is crazy and you never know what is going to happen in the process but I have been super lucky with my symptoms. Yes, I have some mild gvhd but it is totally worth it and 10x easier to deal with then chemo.
I have gut gvhd which basically means I crap all of the time! I can't eat certain types of food and even drinking some things makes my stomach hurt. I take medicine for it when it flares up but nothing truly helps 100%. I also get mouth gvhd which is hard to deal with because I can't eat anything. It usually flares up when I eat spicy foods so I try to avoid them at all costs. I don't get mouth sores per say but my tongue gets very sore and bleeds sometimes and it looks like my taste buds are falling off. Its not a very fun thing to experience and it's really annoying. The last symptom I have from the transplant is joint gvhd. This one sucks! I am in pain almost everyday of my life. My wrist and the right knee are the worst sources of pain for me but all of my joints ache. It's almost like Rheumatoid arthritis. The donors stems cells are attacking my joints as if they were a foreign source. It sucks dealing with the joint pain, i feel like my body is 80 years old. (no offense) Some days are better then others though. I have days were all I do is stay in bed. I also have good days were I push myself to do adventurous things, ( against the wishes of my doctor) but I have a 5 year old so I have to try extra hard! My step-dad Mario has a boat that we love to go out on. It just kind of makes me feel at peace when we are out on the bay. ( I do wear like way too much sunscreen and I have UV protected clothing though) No it's probably not the best thing to be doing but I mean, I just had cancer for the second time and now I have a second chance at life because of the stem cell transplant so I want to live my best life.
My doctor has been testing my chimerism for a while now because I haven't yet hit and stayed at 100% donor. On July 10th we found out that I was finally at 100% but we are super nervous about it and didn't tell anyone. My numbers have been going up and down so the doctor wants to continue to test my chimerism to see if it will stay at 100% or if it will go back down. It's hard to be happy with this good test result because of the ptsd. Even my mom has it. We are happy that I am 100% donor right now but so scared that it will drop again. SO we just have to wait for more tests to come back. Which only gives everyone anxiety. The latest bone marrow biopsy did come back with No Disease Detected! So at least there is no leukemia in my body and that gives me some hope!
But what's next?
SO I still have my Hickman port in my chest and for the doctors and nurses it is very easy access but for me it's a pain in the butt! I get that everyone gets a port for transplant but its been like 8 months now and this thing is a pain. The reason that it has been left in is because if I need more chemo or more stem cells they have access to give it to me. My veins in both my arms are very bad. I can't even have a picc line placed because of the veins collapsing so easily. I also cant have the port on the right side of my body because I have a VA shunt placed and my neurosurgeon was very nervous about another foreign object in my body. So for both of those reasons my Hickman remains in.
SO that's what has been going on with me. Just recovering day by day. I take each day for what it is and just live like there is no tomorrow. My experience through all of this has me knowledgeable about what the outcome could have been and for that I am so unbelievably grateful. I see people who have no symptoms or pain and wish that was me and then I see people who are in excruciating pain and lose there life and I can't help but feel so blessed.
I still have a ways to go and the recovery process is long and tedious but I am here. I am alive and thriving. I am here for my son and my family. I am able to go to the doctors. I am here.
The financial struggle will eventually get better and my health will eventually be "normal". I pray everyday to remain positive and be humble.
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