Day +12

I really fell off the map there for a while, and I’m sorry If I scared anyone, but don’t be afraid! It was for very good reason(s). I promise I’m Ok. I’m actually WAY better than OK, but we will get to that in a minute.

It was a bit of a grind after day zero and everything really started to blur together fast. I lost total track of what day it was or what was happening, and I just allowed myself to listen to my body and what it needed, because I legit had energy for nothing else. I think my parents knew it was bad when I stopped even thinking about my cell phone. I would go entire days without texting them or my husband back because I couldn’t even lift it up to my face, and would just hope they would know I was OK.

The last nine days involved a f***load of sleeping. Like almost entire days where I was just sleeping or laying there, not moving. Opening my eyes seemed like a Herculean task, and if I wasn’t sleeping it’s because I was throwing up. I was on a mind-boggling number of anti-nauseants, pain meds and other drugs that made me feel extremely detached and out of it. Billy can attest to the many times I had conversations with ‘visitors’ while I was sleeping, who definitely were not in my room ‘visiting’. So if you didn’t visit, don’t worry, my brain through you did anyways haha. There were days where I couldn’t even make it to a bathroom and I had a tiny potty chair beside my bed that I had to use endlessly. I put on excessive amounts of water weight from fluid retention and would have to take drugs to help remove it all, which meant, more potty chair.

On top of it all (Sorry if this is TMI, if you’re a dude you can just full out skip this) I had a Lupron injection prior to my transplant to try and preserve fertility, and also pause my periods so I didn’t have to deal with excessive blood loss when my platelets dropped to zero. It is currently experimental as part of the transplant process and there was no guarantee it would work but I really wanted to try. Unfortunately due to some delay in getting access to the trial drug, I had it delivered too close to the end of my cycle and got my period, on day zero. Annoying. It lasted two entire weeks and was so severe in terms of blood loss, I required three platelet and two blood transfusions to offset it so I wouldn’t DIE. It was freaking INSANE, and a pain in the ass on top of everything.

The mouth sores when they started were vicious, but I didn’t even get them that badly, so I feel so terrible for people who Do. They are AWFUL. The bone pain in my hips and back during engraftment was also quite painful, and I had terrible stomach pains for about 4 days that were like… unbearable, as my new baby tummy tried to figure itself out. To top it all off, I was attached via my central chest line, and eventually a secondary line they had to put into my arm to accommodate a feeding tube, to a massive pole with multiple machines on it (including a pain pump, yay!) 24- hours a day, for almost two entire weeks. It made everything so difficult and required so much extra energy and effort, and I eventually really despised my pole, but it was almost my lifeline so I tried my best to ignore it. It just made showering and sleeping exceptionally hard.

The side effects of the transplant and chemo created what felt like a never ending migraine for almost a week, where if I could manage to open my eyes, I couldn’t wear my glasses. I couldn’t have lights on, no one could speak. It was like everything was irritating my brain. Again, I just pulled inward, and allowed my body the rest that it needed. As I lay there, sometimes not sleeping, but eyes closed in silence for hours, I talked to my body. I talked to my new cells. I reminded them every day they were welcome in my world, that I would always care for them, and try my best to hear them and listen to the messages they were sending me. I thanked them. I thanked my body. I thanked my old cells for keeping me alive as long as they could. It sounded silly, but it put me at east. I felt like they could hear me, and they were happy to be seen and appreciated.

On Day +7, my family and I started an ‘Engraftment Pool’ where we all picked which day we thought the engraftment of my new cells would begin. This is reflected in my White cells shifting from zero, upwards. Even .1 of a shit upwards from zero counts as a sign of engraftment after transplant. Engraftment usually happens between day +10 and +14, so everyone picked a number between +9 and +16, (I chose 9, I can’t believe no one else did, way to bet against me you jerks! Jk) and wouldn’t you know it, on Day +9- BAM, early engraftment. And not just a little bit, a big jump. So much that within 3 days, my white counts returned to normal, higher than they’ve been in an entire year. My doctor said it appeared to be an early, and very strong response, and I was thrilled to hear it. I was also thrilled that I won the Engraftment Pool. Heh.

Fast forward to today, I feel like a totally different person. As soon as my counts began to rise the change in my was dramatic. I suddenly could sit up, walk, was hungry, wanted to talk, wanted to text back the 8 million people I’d ignored for 2 weeks. I wanted to get back to life!

After a steady increase in my counts the doctors are satisfied the engraftment was successful and durable and there so far has been no sign of GVHD. Before I checked into the hospital someone told me to pick a release date. A day I wanted to be released by so I had something to work towards. I picked May 8th, because it’s my mom’s birthday, and wouldn’t you I know it- I’m getting released early, on May 3rd, this Friday!

I’m over the moon about how everything has gone. I just started losing my hair today but thats OK. So far I am feeling really good, but I am not out of the woods, nor will I be for a while and it’s hard to remind myself this is a marathon, not a race.

Important time markers for transplant are surviving the first 30 days (almost there!), Making it to day +100, and then making it to one year. If I can make it to one year without relapse or GVHD, I have a much higher long term survival outlook statistically. GVHD (Graft Versus Host Disease) will remain an issue for the rest of my life. During the first 100 days it is considered acute, and beyond that any episodes of GVHD are considered chronic.

The thing about a bone marrow transplant is, your organ DNA stays the same as when you were born, but your Blood and marrow DNA becomes that of your donor. So you are technically hosting two different people in one body (It’s called chimeric DNA.) The goal is to quiet my own body’s DNA down to the point where it accepts my donor completely. After that, any infection, illness or immune response by my body can trigger my old cells to wake back up and cause an episode of GVHD, which can cause life-long complications as your body continually fights against itself.

For the rest of my life I will need to be careful to avoid any unnecessary exposure to illness or infection, and I will have to wear sunscreen, hats and UV protective clothing because even a sunburn can trigger it. For a sun baby like me, thats a hard pill to swallow, but I’ll take the rest of my life in exchange for it!

Anyways, just wanted to say I’m here, in my second life, and everything is going grand so far. Thank you all for your support and love. I know it made the world of difference and helped me get back on my feet faster and stronger than even my medical team expected. Love can move mountains, as you have moved them for me. Thank you <3