And then there was Day +6.
Today was hard, very tough. I woke up feeling like I needed to pee. And then that progressed into what felt like a urinary tract infection. My Team mentioned they found red blood cells in my urine, inquired if I had seen any blood?
At that point in the morning, the answer was no. I was firm.
But then it changed to yes as going to the bathroom brought tears to my eyes, and more blood than I’m comfortable with (which is still zero, if you were wondering). Transplant brings many firsts, including crying while on the toilet, and again after leaving the bathroom.
I reported everything immediately. Tests were ordered, I provided a urine sample and cursed just as my nurse asked if I could pee again, as another test had just come through.
I asked questions, but no one really has any answers yet. Especially as my bleeding didn’t really start until after all of my doctors had stopped by for the day. Timing was never my strong suite, I suppose. My bladder is just following my lead.
Blood in urine and bladder issues are common among Stem Cell Transplant patients; our bodies go through so much in the Conditioning process (chemo). And at Day +6, moving into Day +7, I’m at the cusp of what my nurse Andreas calls “The Long Night”. AKA – the time where it gets really sucky for your body, until you start producing new neutrophils. No, not the exact medical terminology, but it sounds like something from Game Of Thrones, so I’m on board.
My nurses reminded me that EVERYTHING that I experience, my transplant team has dealt with. I’m not the first. And actually, in my protocol, I’m transplant patient 72, or something like that (I may be off by 10). The thing is – nothing that my body is doing is new to anyone on my team, and they’ve treated all of it before. I’m in good hands, and I’m lucky because I didn’t have an added illness such as cancer going into transplant. Other patients do.
That being said, it’s new to me.
And its scary. Its terrifying to look in the toilet and see blood that didn’t come from the normal source (uterus), see it on your legs, knowing that your White Blood Count is 0.10 and Platelets are a whopping 36. And then, not knowing the exact cause of the blood – is it chemo? Is it a virus? Is this treatable or will I struggle with this for an undetermined amount of time? And then struggling with the pain.
And then walking into my hospital room and being completely and totally by myself.
It was overwhelming and I cried. I think anyone would have.
It would be one thing if it were pneumonia or a sinus infection. Give me bone marrow issues or warts or clots to spice it up. But this isn’t anything I’ve ever ever dealt with. The novelty scares me; an understood opponent feels less insurmountable because its already been defeated (and I hope to god that sentence makes sense). I’ve NEVER dealt with bloody urine, or needing to have a maxi pad for my bladder because of ____________________. And it’s fucking terrifying.
And then doing it by myself, having my loved ones far away.
2020, fuck you.
Tomorrow we will hopefully have a better understanding of what this is and how to best support me through the discomfort. This is the time where I really need to trust my team, practice some constructive mindfulness and take good care of myself. I’m tired, exhausted and am ready for bed. I could keep writing, but with my tired state, that won’t be doing anyone good. Day +6, I’m happy to see you almost over.