day zero

My stem cells are finally here fresh from Makayla!

I am finally in the + DAYS. Praise the Lord, let me tell you this truly brings a whole new meaning to the phrase “take one day at a time”. Even with cancer the first time, I thought I understood this, I thought I understood this in the negative days leading up to transplant. Maybe I don’t even understand it now, but it has taken on a whole new meaning. Let me tell you what happened in the “negative” days leading up to day 0.

A lot of people love to say the donor has an easy job (to avoid to stigma of pain associated with being a BMT donor) there are patients that won’t have a chance at a transplant. I think this is because it isn’t very likely that you find a 100% match donor on the registry. This could be that people are not on the donor list because they think that process may be very painful. It important to destroy the stigma that stem cell donation is some huge painful process. And yes, the process of donating is “easy” if you are comparing to the actual transplant. But it is not without its own unique challenges to the donor that are important to know.

Let me me walk you through what my donor Makayla went through. On Sunday she opened up a package of 5 shots containing the medication needed to stimulate her bone marrow to produce a lot of stem cells. If you know Makayla you know she has never had a shot and a very limited exposure to doctors….like none. That week she quarantined at home alone to avoid any additional exposure.

She had to stick herself with the shots. This is REALLY scary if you have never had a shot, these are long needles! She did this with some initial help from a friend and then on her own for the next days leading up to transplant. With her body stimulating the production of so many cell cells, she had a some cramping and, bone pain. So minimal symptoms but not exactly a walk in the park. Honestly I couldn’t be more proud of her because she was so incredibly brave and was excited to have the symptoms she would tell me “ I think that means it’s working, I am trying to grow a lot of cells for you!”.

In the mean time over at IU I was finishing up my insanely large doses of Thiotepa and transitioning to the Cytoxan. Hopefully my last tango with chemotherapy forever. The doses went fine, with exception of the nausea and cramping. Which I have begun to accept as my baseline “normal”. By Tuesday my counts dropped and I went from walking and riding the bike for 60 mins a day to having a hard time even getting out of bed. I had gained 12 pounds of fluids from all the liquids they were trying to push through my body while they were administering the Cytoxan. I blew up 12 pounds of water weight in just a couple days and for about 3 straight days I felt like I peed every 15 minutes round the clock. They do this because Cytoxan can attack your bladder and cause a lot of infections and bleeding. If they flood you with fluid they hope to get it out as soon as possible.

Then I hit a wall.

It wasn’t a slow fade. It was instant. At the same time I hit a complete mental block unable read, watch tv and answer texts. I felt like complete shit and these weren’t even supposed to be my bad days! I failed already. I guess kids these days call it “disassociating”.I felt like a shell, not a person.

I couldn’t find joy in anything, seeing other people on the unit struggle to walk and get out of bed was also discouraging. It made me contemplate what I had to look forward to. You aren’t guaranteed anything with transplants, its all risk and there is no playbook. It’s all wait and see. You control virtually nothing, you have no control over how your body decides to respond. The only thing you have control of is your mind. But I had lost that.

FAIL.

What is really hard is you experience weakness, intense fatigue, cramping, pain and total deterioration of your body after chemo but, the real side effects don’t come until 7-10 days later. I had to learn to accept this as a good day and a new normal moving forward. I am a very mentally tough person, I am also very positive in almost any circumstance. But when I looked in my mental piggy bank it was empty. Time to build it back up.

Thursday hits, day 0! Makayla and Tressa head to the out patient floor of BMT unit at IU. Her extraction takes place at the same hospital that I am at, but thanks to COVID we can’t see each other. They do some blood samples and hook her up to a machine called an Apheresis Machine. Makayla gets an IV in each arm and they withdraw blood from her body by circulating it through the machine. The machine separates the stem cells based on weight, collects them and them allows her blood to flow back into her body. This machine ran all the blood through her body almost 5 times. That entire time she can’t move her arms, so she is stationary, relying on Tressa to feed her, itch her nose and help her with any other personal…things. All in all the task was about 6 hours. Not painful, just all encompassing.

Makayla hooked up and ready to donate

My sisters really are my hero’s. It’s an interesting thing to have helped raise your sisters so closely, teach them so many things and then one day look at them…see them as full blown adults that you need. I never thought I would be on the other end of needing something from them. But with pain and uncertainty like this there is a bond that is even more intimate and stronger than what we had before and I’m here for it. There is nothing but more love and solidarity after something like that. It’s intense and it’s beautiful.

Piggy bank of hope starting to fill again.

About 5:00 PM a guy in a blue outfit comes speeding into my room with a blue cooler bag. My stem cells! It’s very simple, my nurse actually administers the transplant. It’s as simple as a blood transfusion. They take my vital signs and hook me up. We wait, look for any bad reactions and they don’t come. It feels exciting to know that this is what I have been waiting for, we’re here. But still uneventful, like I said the transplant is the simplest part of all of this for me! In about two hours it was complete.

DAY 0 WE HERE.

The past couple days have been increased symptoms of the same, fatigue, nausea, pain and impending doom. My counts are slowly starting to drop and I should be in for a bumpy road next week, that’s when I should lose all my hair and any old blood cells will start dying. Oh, and I finally lost control of my bowels, yep, I shit myself. It really is like I’m a new born baby. But when I say I have the immune system of a baby, that is not totally accurate. A baby has more protection than I do! In fact over the next several months my blood type will even change, I will have Makayla’s blood type and all the other DNA that comes with it. This type of chemotherapy even wipes out my vaccines, after about 250 days I will start a new vaccine record. But that is many days ahead and I promised myself I would look at this only one day at a time.