Oct. 10 out of the hosp! but into the SCCA

This post is a collection of three separate writings noted by the date. I got out on Sunday October 7th, just in time for my birthday the next day.

Oct 5: Sitting in the hospital bed. Finally going to write a little something coherent about this most recent hospital stay. Overall, it’s been extremely taxing: my body, well, it’s been through the wringer with 104 fevers, constant heart-rates above 100, general lack of nutrition due to dietary restrictions and/or nausea, and a complete lack of walking more than 10 steps in a row--the rooms are small and I couldn’t leave them.  My mind, oh the every moment over-analyzing the day’s events as I didn’t want to miss any detail that might help myself or the team come up with answers, and the constant attention to what nurses and doctors were scheming so I could argue when I needed to. And my soul, oh dear, why did I come to the hospital in the first place? I lost total sight of the goal along the way. And now? I don’t want to hear the word “bleed” for 6 weeks at least.

Oct 7-I'm out! Now sitting on my couch , glad to be home! Glad to walk again. (I couldn't walk in the hospital because I was on droplet isolation from a rhinovirus (common cold virus) and the unit has too many people that are immunosuppressed to allow sick people to circulate).  But now I'm home - I can get my own hot water! I can eat when I want instead of waiting 45 minutes. It was all this small stuff that added up to an annoying stay. Probably not uncommon for patients. But whew, wish I woulda added some more to the paragraph above while I was still in the hospital, harness all the emotion I was feeling, but alas, I will have to write from afar.

Oct 9- Well that blog section above didn't get going like I thought so with a few days perspective, my emotions have certainly simmered, but they might start boiling as I get writing. I'm sure many a patient has made some analogy to the hospital being a moving machine with many moving parts that needs everything to sync in order to move, and occasionally waiting for an opinion from a doc or a blood test from the lab or Phil from engineering to fix the bed can stall the machine for awhile.

In my case I felt we were guiding, not a machine that can stop and go, but a wobbly, stumbling rhinoceros that was moving no matter what. Massive in size and capable of large amounts of destruction, you need to try your best to control it. And once it got going, decisions had to be made to steer it to the right course. Different doctors had different size sticks to steer it or slow it down, with Dr. Diwahli, as the attending, having the largest one. But the rhino behaved on its own: only so much you can do. And ultimately it was my own beast and my blood tests combined with my interpretations of symptoms were the best information we had about its intentions. I found it difficult to convey the information accurately and without bias--listen, I know when I'm bleeding! Stop saying you think I am, yes it's really confusing, but there's a lot going on, I'm getting lots of IVs, but I can tell you I don't have an active bleed at this moment! Also no way in heck are we doing a colonoscopy to investigate your hunch--and ultimately spent considerable amount of energy attempting to do so, as shown in the snippets of conversation above.

At some point mid-morning on Friday, Oct 5. I started feeling like a crazy person, and it was a terrible feeling. The look that someone gives you as they decide that your talking nonsense when I was convinced they were talking nonsense is awful. I felt helpless. And the feeling was compounded by being in a 10 x 15 brick room that I couldn't leave. It all started the day before when I had another G.I. bleed which the G.I. team decided to do another endoscopy. They didn't find anything on the endoscopy nor did they find anything interesting on the following CT scan. But they were on the hunt for a reason for the blood. I figure just do it it always does which is slowly work its way through my digestive system. But this didn't seem to settle well with most of them. So they came in with different theories and wanted to try a colonoscopy, and decided to put me back on NPO. I was pretty upset  but then walked in Dr Dewahli for rounds and summed up the situation logically and accurately, and I couldn't have been more relieved. Then she went into the recent leukemia numbers from my blood a few days before. The numbers were good: 0.009% blasts in peripheral blood. Which at this point is fine and a positive sign that the car-t cells were finding and destroying leukemia. I didn't listen for the first 30 seconds though cause I was still processing what we were talking about. Oh right he leukemia! The whole damn reason I'm in the hospital. I realized I had lost sight of the real goal so completely. It was some much needed perspective: GI annoyance was secondary.

On Saturday night (Oct 6), some of the guys (Jay, Greg, Kevin, Dan C.) decided to stop by. It was a great break from hospital life, and even though they had to suffer a little with the heavy gowns and annoying masks that all visitors need to wear when they are in the room, we made the most of it. We watched some football, talked and joked around a lot.  All in all, it felt good to laugh and talk about something other than medicine.

Sunday morning I got out of the hosp, came home and slept. Briana drove up from Portland with her sister Myra and Alpen. Monday was my birthday and it was very nice. Best present of all: being out of the hospital and being through (most likely) the worst of it. We all went out to breakfast at the Columbia City Bakery and I had a latte with a danish. Felt special, and def not the typical Monday morning. Myra, who works at Bonneville Power in Portland had Monday off because of indigenous peoples day and therefore she was available to take me to my appointment at the SCCA. Unfortunately my platelets dropped some since Sunday and I needed two bags of platelets which put a damper down my birthday a little. But everyone was very nice at the clinic and my scheduler organized a card from most of my nurses on the immunotherapy floor. Since I have to share my birthday so often as an identifier it was nice to finally say “it's today.” For dinner Briana picked up a rotisserie chicken from PCC and we had that with some sides. PCC food >>>>> hosp food. Dessert was a 4-1 Sounders win and a M&M cookie. Briana got me a watch for my birthday so I no longer look like a total nerd wearing my Timex Ironman at all events (don't get me wrong: still love my Iron Man, I mean three alarms? a timer? very functional, def still keeping it around). A larger two birthday celebration with my family will happen on Thursday which is also my dad's birthday. Just made sense to join them this year.

Now at clinic getting 2 bags platelets. That seems to be my path these days. Show up at clinic receive two bags of platelets and drive home in traffic. This has given me time today to write this post, well I guess most of this post. Future is waiting for my counts to recover naturally and sometime next week doing a bone marrow to check how the marrow looks and how much leukemia was eliminated. At this point it would be unusual for any more severe symptoms to present. I do feel fortunate that I got out of the hosp with only level 2 CRS (low blood pressure requiring a bolus but not meds, and high fever). The neurotoxicity stayed at bay and so I didn't have to feel what it would be like.