It’s been 22 days since I received my stem cells and what a ride it has been.  For the first few days afterwards I continued to feel okay without too many complaints. On Day 5, I did a complete 180 when my counts completely bottomed out.  I went from feeling okay to not being able to walk from the bedroom to the living room without assistance. I was so weak that I had to use a wheelchair to get to clinic. For those that know me, you know that I wear my pride on my sleeve and that was hard to admit I couldn’t make it that far. I joked with the nurse that I didn’t want to have to wear a yellow fall risk bracelet for the next 6 months, and that was the only reason I agreed to it. It was some of the hardest days I had ever experienced.  

During this time I wasn’t able to eat or drink without being in intense stomach pain that would stop me in my tracks, thus I didn’t. I can only describe it as your stomach being twisted and pulled- similar to a labor contraction without the relief. It’s honestly some of the worse pain I have ever experienced and I have had two babies without an epidural.  It would take over 2 hours for me to take my medicine (only 3 pills) because I couldn’t handle a small sip of water. I remember telling the NP, that I was still able to take medication when she asked, I just left out how long the process took. The moment they started IV fluids the pain would start immediately and I can’t tell you how many times I sent Terry for a puke bag- thank goodness he can still run pretty fast after training all these years running after the kids. 

Around the same time, I started to bleed for no known reason. This was a concern due to my numbers already being so low. As my platelets continued to drop, it became evident that a platelet transfusion was needed.  Thankfully luck was finally on my side as my body handled the platelet infusion like a champ and we started medication to stop the bleeding.

It wasn’t long afterwards that I spiked a temperature and was sent to clinic. Part of the contract we signed at the beginning of this states that we must reside within 30 minutes of the clinic during BMT for this reason. We had to get to clinic, during rush hour, in 30 minutes as every minute with a fever can be dangerous. When we arrived , the team had blood culture bottles ready to go and antibiotics hanging ready to be infused.  I have never seen such orchestrated and organized chaos. We immediately started antibiotics and there was a bed in the hospital ready 30 minutes later. 

In the hospital it was determined that my fever was most likely due to early engraftment. This was great news that my body was engrafting but my hemoglobin was continuing to fall. I wasn’t there long before I was given a blood transfusion to help my body. Thankfully this was our only real “excitement” of the hospital stay. 

After a few days, we were released from the hospital and instructed to resume our daily clinic visits. By this time, I could finally drink a few sips of apple juice without getting sick which was a huge improvement compared to before being admitted. I felt like I was finally moving in the right direction, but unfortunately there were few setbacks in side effects due to some regressions in my counts. 

Today, my fatigue level is something I can’t even explain. I am currently sleeping around 18+ hours a day and try to make it 2 hours between naps. I am currently battling bleeding still and my numbers dropped requiring addition growth stimulating shots last week, in hopes it would help raise my WBC and ANC. I am still unable to eat or drink like normal. I promised my oncologist that I would try to drink 2 liters per day and there are many days I drink a total of one glass of fluids- but I am trying. I can literally go from feeling okay to feeling horrible in what seems like the flip of a switch which is hard for me to accept.  I know we are making steps in the right direction but I don’t know if I was mentally ready for this marathon. Although, I don’t know if anyone can fully be prepared no matter how much reading you do before hand. 

This week we will be in clinic. We will be meeting with the survivorship team to discuss how everything will go until Day +100. I have a lot of questions to ask, especially about the timeframe for us to be able to see the kids again. We are longing to hug them as it’s been 5.5 weeks since we said our goodbyes but also know that we can’t rush the process.  Here’s to another week being half way done.