To everyone who has contacted me over the past few weeks – thank you. I feel the love and support. I’m sorry that I haven’t been able to get back to most of you. I just can’t right now.
I can’t stop thinking about this last admission. I have an app from Stanford Healthcare that shows me my test results. Remember how I was getting stuck 10 times a day while going into renal failure? I can literally watch it happening on the app. The first metabolic panel on Saturday the 9th had a creatinine of 0.7 (normal is 0.4-1.0). On Tuesday the 12th it was 5.2. I don’t remember a lot of it, other than suffering unbearably, but I do have flashes of that night. The ICU team spent all night trying to stabilize me. I mostly only remember my head pounding, my blood pressure flashing 180/140, and the ICU fellow yelling “give her more lobetalol!” over and over. But the moment that I can’t get out of my head is struggling to breathe. I was on 25 liters of 100% high-flow oxygen which is, in a phrase, a LOT. I really couldn’t breathe. They brought in a portable chest x-ray and I watched the results pop up on the screen – my lungs were entirely white (they are supposed to be black, the white was fluid). I was actually drowning in my own lungs. The only other time I have experienced that feeling is when my central line spilled into my chest cavity in December 2015. The feeling is simply indescribable.
^these are all from the same admission.
Since getting out of the hospital everything is even harder than it was before. My muscles are weaker and I’m more tired. Most of all, I am having a really hard time breathing. This is mostly due to the scleroderma, which is compressing my lungs so tightly that I can’t take a real breath. I cannot make my bed or walk to the kitchen without gasping for air. I cannot have supplemental oxygen because insurance won’t pay for it if you CAN breathe, even if it’s very difficult.
The good news is that I seem to be making a miraculous recovery. On Friday the 15th I had a dialysis catheter placed in my jugular because the nephrologist insisted I would definitely need dialysis for at least a few weeks. On Saturday, my creatinine started to fall on its own, and I never ended up needing any more dialysis. At this point my kidney function has seemingly fully recovered. But not in time for me to avoid getting a freaking catheter tunneled into my jugular while A W A K E. They gave me versed and fentanyl and kept saying “Oh you won’t feel anything and you won’t even care what we are doing!!!” I felt it, I cared, I was awake. Afterward, they couldn’t get the incision to stop bleeding because I have clotting issues (both because of the imbrutinib and because poor kidney function causes clotting issues). They sent me back to my room while literally bleeding out and my nurse had to call the OR and be like “um, I don’t know if our definitions of oozing are different but I think this is more than oozing.” The surgeon came back and yeah, it was more than oozing. When they finally stopped the bleeding and took the gown off of me they told me not to look, but it was soaked entirely through. So were the sheets. The stupid thing still hurts.
Because my kidney function recovered so rapidly, the nephrologist would not do a kidney biopsy since he felt that the risks outweighed the benefits. The BMT team still wanted to do it. I did, too, because we still don’t know why this happened and how will we prevent it from happening again? But because I am already at high risk for bleeding and there is no guarantee the biopsy would have told us anything, we just have to wait and hope this was a random freak acute injury.
So, I went to Christmas yesterday and I burst out crying in the middle of the huge family gathering. It would have been embarrassing if I had energy to feel anything other than traumatized. I think I was mainly crying because I really can’t enjoy anything given my physical state of being, but also because Christmas brings those questions about your life, how you are doing, how’s school and work. I’m fine, thanks, miserable every second of the day, just dropped out of school and had to give up the research I’ve been working on for a year, I’m on 50 mg of prednisone daily and my face is a planet, I’m 22 years old and my friends are spread across the world while I just moved back in with my parents. It’s been 2.5 years since I was diagnosed with cancer and there seems to be no end in sight. I’m doing really great.
But really, mostly I just can’t stop thinking about drowning in my own lungs.
Because pictures can describe this more than I will ever be able to: