I have all these grand intentions of being on top of posts full of updates and things of that nature, but for some reason I’m just shit at that. So I have nine partially completed posts, but I just never got around to finishing them, I’ve decided I don’t feel they’re adequate just yet, or some other reason that prevents me from posting them.
And so, as you’re all pretty used to by now, here comes a probably lengthy tale of the events that have transpired since my last post.. or at least as much as I can currently recall… you know how that goes!
Perhaps the biggest occurance (hang with me on this one) was several weeks ago. I was diagnosed with a fungal infection which severely threw off the plans for transplant because along with the antifungal I was receiving, an immune system of any sort was better than my neutropenic one. Extra help to battle the new enemy was required.
During this time, I underwent another bone marrow biopsy to see where the leukemia was at.
Side note: I remember feeling quite well and confident on this day. Down in the OR pre-op several people made mention of it being a good day, to which I wholeheartedly agreed. I felt good about what the results of my biopsy would be…
When the results came back and one of our favorite Fellows came to see us, my already fucked-up, mixed-up world was sent into one of the most shocking and confusing tailspins I hope to ever experience. He very kindly and clearly explained to me and my parents that the AML was still present, and that because of that and the fungal infection my treatment options were incredibly limited– non-existent. Because of that, it was thought that I should be discharged and spend my remaining months enjoying life and doing the things that I’ve always wanted to do.
I feel like I’ve faced death a lot in these past two years. But never have I felt that it was lurking so close… hiding in the shadows just barely out of reach. And now here I was, sitting in a hospital bed with my parents, trying to hold back tears as he spoke. The longer it went on, the more the tears welled in my eyes, first threatening to spill over before they finally cascaded down my cheeks. I’m pretty good at silent crying when I need to be.
Time passed as my parents and I sat together, all of us soaking up the news, crying and in a general state of “what the fuck?!“. After we had a good cry, I asked for some privacy so that I could make some calls and mull the news over in my mind.
I’ll tell you something right now, it’s an odd feeling, being told you’re dying. That you have months to live. That all the things you’ve dreamed of achieving, of living to see, to experiencing will most likely not happen. That your family and friends will keep living, and that you won’t be there to see them grow and live their lives, accomplish goals. It broke my heart. Initially for me and the loss of all the things I wouldn’t get to experience. But as I thought about it more it broke for my family and my friends, for the times I wouldn’t be able to share with them. The thought quite honestly caused me to feel like I was letting everyone down. What an asshole I was! To have fought so hard for so long and then just go ahead and die. What the fuck.
I had called Tim and asked him to FaceTime me when he had a chance, but I requested he do it when he got back to his apartment, unsure of how the news would be taken. During that time, the Fellow returned, followed closely by my parents. He looked at me and more or less said, “I don’t know what you did in the last 10 minutes… but your bone marrow is clear. Someone signed off on the results before the final read came through, and it’s clear of leukemic blasts.” This news was understandably shocking and thrilling. I still had/have a lot of work ahead of me, but the fact that there were no blasts opened up my options on treatments for the fungal infection, and as soon as that was resolved we could continue with a plan for keeping the AML at bay, and ultimately transplant.
Thinking about it, I am so thankful that the news occurred in the order that it did. I can’t imagine hearing any of that the other way around. And I definitely can’t imagine being in the Fellow’s position– having to share such awful news and basically come back and say “jk you’re not as fucked as previously thought!”.
And another thing is, holy shit did he do an excellent job breaking the initial news to us. Even if the second part hadn’t have followed, I remain sincerely impressed with the manner in which he delivered the news. Never would I wish for anyone to have to share or receive such news, but if it’s got to happen, the way he did it was just incredible. Even my parents were impressed. There’s so much more I want to say on that matter, but my tired mind is somewhat cloudy at the moment, so perhaps I’ll have to revisit this section later. For now though, I’ll just leave it at that he did a fucking amazing job telling me I was dying, even if it turned out to not be entirely true.
What else what else?
Ah yes. I was discharged after 76 days in the hospital, my new record! Although I’m not sure if it really counts because I did get several LOP’s (leave of pass) which allowed for me to venture home for several hours on different occasions. But, as can be expected, it’s still so fucking nice to be home.
For now the plan is to keep with M/W/F labs and infusion, where I return to my home away from home and remain closely followed by my team. On these days I also receive my antifungal, which will continue happening for at least a few more weeks. These visits also sometimes involve transfusions, though I’m hoping they will get fewer and farther between as my immune system starts to reboot some more… so far, so good on that front.
The latest struggle has been with nausea. It’s a fucking bitch. I’ve eaten more the last two days than I have thursday-sunday combined, but I still can’t seem to shit which is driving me absolutely crazy! I just wanna not feel like I’m going to barf and also be able to poop!! But apparently at the moment that’s too much to ask… fuck.
Don’t worry though, even if it’s a month from now you’ll all be properly updated on how all of these situations play out (most importantly the pooping one, you know!). In the mean time I’ve got to call it quits, as I am exhausted!