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.
I am hoping that you get to sleep soon and that your team will have answers for you tomorrow. And the rest of us will hold you in our thoughts until this situation is resolved!
“The Long Night”……scary words, no matter what they refer to. I just want them to go away – not the words, but the pain. Oh Marit, it’s too frightening to know something awful is taking place, something not wanted, but needed to proceed onward toward the magic goal. I could feel pain come through your voice when we spoke – but I also felt an acceptance and determination to continue no matter what. Grandpa Joe has tears in his eyes.
I’m so sorry that you have to go through this without loved ones near by. I don’t know you but sending good vibes ✨ you’re way . Hang in there 🙏
Today will be better. You are a Warrior! Sending strength and love your way!
Hi Marit, I am sending you a lot of hugs and love. I hope their is some secret corner of the internet that is full of kitty videos—and the corner shows itself to you today. I’m thinking if I could visit you, I’d see if you’d like a foot massage, so if you like those, I’m giving you a great one virtually. I hope today goes up. I wish you didn’t have to be alone. Many many of us our beaming our love at Bethesda today. And virtual sushi and virtual really good beer taster.
You will triumph!!! You have met a terrifying challenge but you are winning! You are facing a difficult time but you are going to overcome all that the transplant is dumping on you. Your photo brought a tear to my eye. As your dad I have heaps of empathy for you, but you will reach the goal line healthier and carry on far into the century. You are constantly in our thoughts.
Let’s see if I can leave a response this time.
I can’t say enough how amazed I am by tough you are. And your writing and photography are amazing.
Hi Marit, This is our 2nd attempt to send you a reply but neither got posted. Will keep trying.
With much love, Claudia and Art. (Safra Lodge)
Hey Claudia – thank you! I saw your other comment and it should have posted. I have to approve comments before they are visible to the public. Thank you for the well wishes – I hope you guys are doing great!
Hi Marit, Earlier today, Art tried to send you a very long email but had difficulties doing so, because it never got posted. And since you mentioned to me that you need to approve of comments received before they get posted, were you ever able to read his posting for you ? I’m confused as to how this all works. Let’s do this instead, okay ? Could you please get back to me with your email address ? my email address is email@example.com …. and then Art can send you his detailed email. many, many thanks ! and how are you feeling today ? hope you are able to get some must needed rest and that today was a better day for you. and oh-yes, btw: our daughter, Aria, posted a reply on your site but she did not make mention that she is our daughter, so you were probably confused when you read her post, we
figure. anyway, I told her all about you and your medical journey and she is very concerned about you, as are we ! love, Claudia
YOU’RE MY HERO, MARIT!!!!! ❤️
You are so strong!! Anyone who can hold a 30+ minute plank (I can barely plank for 3) is my hero!! I hope today is a better day!! Praying for you Marit for peace and comfort!!
Hi Marit, I am so glad you have been writing through all of this, even from afar you inspire me (and countless others) to LIVE each day and enjoy all the little moments afforded to us. I know you feel so far away from loved ones but I am sure they (WE all are) with you in spirit. I don’t think saying be brave is warranted here, you CAN cry, break down, and all of it is ok, one minute at a time, one hour at a time…we are all pulling for you. With love, Althea PS-I am going for a hike today to celebrate you!
Hi Marit, I’m sending you all my healing wishes, thoughts and virtual hugs. I’m sorry you’re going through this alone but I hope you feel the love and company of all your well wishers, including me. I am glad you’re getting excellent care at the best facility to get it. I’m hopeful the garlicy, creamed-corny watermelon puree reaches and works well in its new home Be well.
Rooting for you!!!!!! Hang in there. Brene Brown can say it better than me, but remember the struggle that you live and write will be somebody else survival guide.Thank you.