Recovering At Home

It’s been forever! But I was in no state to do any sort of writing for last month or so. I’m home now after a LONG and trying 40 days. I’m not exaggerating when I say, hardest thing I have ever gone through. Having a stem cell transplant ain’t no walk in the park. My doctors warned me and educated me on everything that would happen but they left out some pretty nasty stuff, guess they don’t want to scare you.

I  can say that my transplant went well technically but I have never been so sick in my life. I started to get sick as soon as they started my chemo. Then the radiation started. Full body radiation 20 mins twice a day for 3 days, standing completely still. Sounds simple but it was far from it! Within my first 3 minutes I felt the fatigue set in. I would try to stand as long as I could but at times my legs just couldn’t hold me up and they would stop the radiation and let me take a break. I would sit down take a quick break, bucket in hand, then jump back in the little glass box.

A lot of naps were had in the following days. My transplant date itself was pretty uneventful, I received my cells at midnight on June 13. Everything went well. Following my transplant I received low dose chemo every few days for a week. Shortly after my transplant I got a bacterial infection in my port. So that came out and they put in a new PICC line in my arm. By day 4 I developed mouth sores and a terrible case of mucositis. My cheeks swelled up and I couldn’t eat or drink anything. I was on IV nutrition for the duration of my stay. The mouth pain is so bad there’s no choice but pain meds. So back on Dilaudid drip for the next few weeks. I was sick everyday. Some days worse than others. It was like having the stomach flu for 30 days straight, not fun.

I received plenty of blood and platelet transfusions, one time having a reaction to the platelets where my throat swelled up and I couldn’t breath. Thank god I won’t be needing anymore of those. While waiting for my counts to come up my doctor decided to give me a shot of Neupogen to help kick start my white blood cell count. It worked like a charm and I engrafted at day 20! But the pain caused from the shot was terrible. I was bed ridden for a full day. My whole pelvic/back area was so sore I needed to go up on the pain meds.

Once I engrafted I was able to leave my room, with a mask of course. My family would take me outside to sit in the courtyard for a bit. This helped. Being stuck in the hospital for 40 days really got to me this time. Near the end I cried everyday, multiple times. I just wanted to feel better. I didn’t care that I was missing out on all the fun stuff my friends were doing. I just wanted to feel like myself again and be in the comfort of my own home.
Before the doctors will send you home you have to have great bloodwork, which mine is now fantastic! You have to be taking all your meds orally and be eating at least 1000 calories a day. 1000 doesn’t sound like much to the average person but to someone who just vomited for the last month, your setting me up to fail! I did my best little bits at a time. I never imagined eating could be so hard! I love food.

Coming off all the IV drugs was difficult because of the withdrawal symptoms. It’s rough but it only lasted a few days. Finally day 40 came and they were sending me home! I cried so many happy tears. I did it. It’s over. I’m never going to be a patient in one of those beds again! I cried the whole car ride home. This whole journey has been such an emotional roller coaster. I’m just glad to be home! With my family. Although I feel so tired and weak now I know everyday will get better and I’ll wake up stronger.