WHOA. It’s been at least a month from my last update. I 100% blame the fact that I’m at the hospital 2 days per week for infusion, and the Internet there is too slow for my blog site, so I can’t type anything. I mean it couldn’t possibly be for my complete schleppy self, wearing Pjs all day (and sometimes the next. Ok. All the time)showering every 3 days (if I’m lucky and not too dizzy to take one), you know…..just overall being a schleppy mcschlepster.
First of all, I want to address the fundraiser. I was super surprised ( and very humbled) that the tickets sold out so quickly. Thank you so much for all of the support, along with The venue, auction baskets, money, decorations, door prizes, food/alcohol, et al. I know we can’t ever repay you, but we also just can’t thank you enough. For those of you who have sent gifts, money, meals, and gift cards, thank you SOOOOO much. Unfortunately I have not gotten around to sending thank you cards, and I have to be completely honest when I say that I’m not sure when I ever will. Hopefully you understand how overwhelming our lives are right now, and can forgive me! Also, I was asked to relay that space is pretty limited, so please utilize the coat check upon entry, and please do not reserve seats at tables. Seating is not assigned. Thanks! So far white cells are still doing ok, so I am really looking forward to seeing my friends and family together in one space 🙂
I was waiting to post a blog until I knew some definitive answers about things. Shockingly, I do not have those answers, but I’ll update with what I’ve got!
WARNING: THIS POST IS KIND OF DRAWN OUT, AND QUITE SCIENTIFIC-Y! READ WHEN YOU’RE TIRED IF YOU HAVE HAD TROUBLE SLEEPING.
The main problem is that my Billie Rubin (an enzyme found in the liver, which turns out to be pretty important), is super high. Normal range is 0.0-1.2. I’m at nearly 19. Here are some fun facts about Billie Rubin:
A bilirubin test measures the amount of bilirubin in a blood sample. Bilirubin is a brownish yellow substance found in bile. 💩 It is produced when the liver breaks down old red blood cells. Bilirubin is then removed from the body through the stool (feces) and gives stool its normal color.
Bilirubin circulates in the bloodstream in two forms:
Indirect (or unconjugated) bilirubin. This form of bilirubin does not dissolve in water (it is insoluble). Indirect bilirubin travels through the bloodstream to the liver, where it is changed into a soluble form (direct or conjugated).
Direct (or conjugated) bilirubin. Direct bilirubin dissolves in water (it is soluble) and is made by the liver from indirect bilirubin.
Total bilirubin and direct bilirubin levels are measured directly in the blood, whereas indirect bilirubin levels are derived from the total and direct bilirubin measurements.
When bilirubin levels are high, the skin and whites of the eyes may appear yellow (jaundice). Jaundice may be caused by liver disease (hepatitis), blood disorders (hemolytic anemia), or blockage of the tubes (bile ducts) that allow bile to pass from the liver to the small intestine.
I am suffering from pretty severe jaundice. The whites of my eyes have Been yellow for a we while now, but obviously since my Billie is getting higher, they have been getting worse. TBH, it’s a pretty sexpot look. In addition, my nails have turned dark brown, and are starting to fall out (God, I can almost FEEL your jealousy!) My pee is the color of Coke, and my skin looks like a spray tan from the jersey Shore gone wrong.
Among all of this, I am exceptionally tired all the time, and my legs/feet are weak, unsteady, and bruise easily. But, nonetheless I have some good days where I have a boost of energy, am pretty productive for once, and am able to meet with my trainer, Bob. I can also clean the house, and can get out to buy groceries. Sounds pretty mundane to the average person, but it feels like such an accomplishment to me. Unfortunately, I’m completely tapped out after about 3 hours! Lame.
Regarding treatment, when I left you all last, we were still waiting to figure out if the NIVO drug was working or not. Because my Billie has continued to rise, they weren’t really sure….until one of my labs came back positive for hemolysis, and my doctor noticed a pattern in the timing that I needed a blood transfusion (getting some healthy blood, and being a total vampire), and my billierubin numbers going up. Put two and two together, and a new theory was born. As of now, the thought is that I have developed a condition where my toxic red cells are being killed too quickly for my liver to process out fast enough, causing them to build up in my system, thus causing my Billie numbers to increase. Which also means that the NIVO is working, since the donor’s immune system is producing so many healthy red cells to kill the bad ones! That’s great news! Bad news is that the NIVO is working! the NIVO is working so well, in fact, that it is what is causing the hemolythis! So the docs are working on figuring out a plan for this. Right now, they are going to lessen the amount of NIVO that I’m getting, and move up my PET scan to the 16th, which is next week. The scan will give a better picture as to what is going on exactly. I hope.
scary things: if the PET shows cancer elsewhere, there is no plan. At that point, it will likely be hospice. I have no prognosis at all, which is….good? I have no idea. I am almost numb to it all anymore.
I have been told I was going to die quite a few times now throughout this journey (DRINK!), and I’m kind of like, meh. Let me tell you something about me. If you tell me that I can’t do something, I will try my hardest to make you look like an asshole. You can take away my strength, my red blood cells, my internal organs….but sure as shit, you can’t take away my will to fight. So take that, dumb ass Doctor. You gave me 2 weeks to 2 months left to live, exactly 2 months ago. And I say, Boom! Made it Sucka!!!