Aug 3rd 2020 summary of last 2 months

This post will be an update of the last 2 months. Which have been fairly busy with healthcare stuff. Too much time has passed for some details, but I’ll write below what I remember. It turned out longer than I expected. The post begins on memorial day weekend down in Portland

We drove down for the long weekend to celebrate “G’s” (Peggy’s) birthday. Things were going pretty well before the trip: I was feeling more energized, able to stay awake longer, and my  appetite was good. However, I never made it to the celebration because at 1am on the first night (Friday) I woke up with nausea that wouldn’t leave and then soon was vomiting blood in the upstairs toilet.  I woke Bree, who suggested that Byrne should drive me, since he is a night owl and still awake. Both Byrne and I got on our phones to look up the best ER. That was a weird feeling, being under pressure to get to an ER, but balancing care quality and distance. I had already prepared some for this scenario to go to OHSU, since that’s the academic hospital and probably has the best bone marrow program.  So Byrne dropped me off at OHSU and at this point in Covid, no visitors were allowed, thus he left.  I traveled through the regular ER shenanigans and then went up to the bone marrow transplant unit. Things were a little different at OSHU than Seattle and some things were very Portland, like all my nurses had visible tattoos and the food was better. But there were also some technology advances that I wish UW would adopt. Rooms had overhead, red lights so nurses could take vitals at night without waking me. Nurses also had a hands-free phone. A system which allowed them to communicate without stopping their task. Finally, the vitals automatically uploaded into the computer system (instead of needing to be manually entered). This was especially nice at night when any reduction of time that nurses spend in the room is a plus. I got out Monday night and Bree, Alpen, and I drove back to Seattle.

Later, on Friday, I had another bleed at 11am. Yes, just one week later. Bree drove me to the UWMC ER. This bleed was reluctant to stop and we were scared that I was going to lose too much blood. They were debating whether I needed emergency procedure from Interventional Radiology (IR). I was still puking blood at the ER, which hasn’t happened before. Things did eventually clot off and I got on the books for an endoscopy the next day with Gastroenterology.  They glued some stomach verices but had more work to do. Three days later they wanted to check-up again on how things looked, so I had another upper endoscopy. Of course before all of these scopes I couldn’t eat or drink and they required a negative Covid test before I could go on the table.  After a week of this crap and stress and worry of more bleeds, I was ready for a longer-term solution..The two long term solutions are both riskier: remove the spleen or slowly kill the spleen. After discussions with the specialists, removing the spleen seemed way too bloody and risky in my current state and killing the spleen was also risky (the spleen dies in your body which occasionally causes infection)  and painful (3-4 weeks). Then IR came up with an idea to block some of the flow from the venus side. Perhaps this combined with more gluing could correct the problem for a few years. Not long term, but the safest way to go.

At this point in the hospital journey (Tuesday) I was stable, but I knew if I stayed in the hospital longer, my presence would apply pressure to get a procedure done that week. That strategy worked, and on Friday they fit me in for the IR procedure. All went well except a few days my liver labs went way high. More on that later. First before I could leave the hosp, GI wanted to do one more scope before I left. So on Monday--and after my 4th covide test in the hosp (they want one 72 hours before procedure)--they scoped again and glued one more verix.  I left the hosp the next day less anxious about bleeding, but 10 pounds lighter. For the liver, it was a mystery. For reasons that are still mysterious to the doctors, my procedure severely inflamed my liver. Sometimes the procedure causes some irritation since they have to poke through the liver to get to the portal vein system. The ca Probably due to all my past chemo, I reacted strongly and became jaundiced and had liver enzymes shoot through the roof. I started back-up again on Ursidiol and it took 1 month to get back to normal liver values. I wasn’t out of the hospital yet.

Back at the clinic we became worried that my hematocrit wasn’t coming back.  We scoped again and got a MRI and a CT of the abdomen over the weeks following the IR procedure.  The summary from the scope and scans were a little GVHD in the belly and a little oozing, and there were still at least one large verix in the stomach.This news produced a flurry of emails between GI, IR, and Dr. Cassaday on what to do next. The three reached consensus on the least risky of the options: another ultrasound endoscopy with glueing. This happened two weeks ago. What should have been an easy in and out with no complications, wasn’t so in my case. During the insertion of the glue and a coil into a verix, the physician accidentally poked a tiny hole into my stomach lining. This perforation caused air to enter my diaphragm and allowed some gut bacteria to move out. I didn’t notice the consequence of this micro-perforation until the next day when I got a fever and medium-level stomach pain. After my 10 previous scopes, none of these symptoms had happened before, so something was up. I knew if I called the nurse they were gonna want me to go back to the hosp. I was just at UW the day before and didn’t want to go back but that’s my medical life--often doing things you don’t want to do.

Sure enough they advised an ER visit that evening. It was a good thing I went though because the fever was the start of bacteremia (bacteria infection in the blood), and they got antibiotics flowing through my IV soon after I arrived on the expectation that bacteria was causing the fever. It was a long night in the ER conferring with doctors of different specialties, and wasn’t until 6:30am that I sleepily lied down into my bed in 8NE. With the nurses eager to bust the door down and get some stupid history info and admit me properly, they came in at 9am and informed me that docs wanted me to go NPO for Saturday to let things heal.. I then started on clear liquids to build up to normal food again the next day. Tough to get calories in with this plan. The bacteremia also caused my platelets to crash to the teens. On Monday, the day I was suppose to go home, I blew my nose and got the worst nosebleed of my life. It wouldn’t stop after 1 hour of pressure. The docs called in the ENT docs, and they packed the nostril. The packing did the trick, but they wanted me to wait til the packing dissolved in my nose instead of taking it out. I had no idea how long it would take to dissolve but figured as soon as I’m outa here, I can do whatever as long as the nose doesn’t bleed again. I kept the packing in for as long as I could stand it, and after two nights at home, I blew my nose lightly and the plug slipped out and I could breathe again. The first minute of free breathing was one of the greatest feelings I can remember

The hospital also left me with a middle back pain that has been troubling me now for the two weeks since I left. The back pain means I can’t really live the life I want to because I need to sit on a couch after standing/walking/sitting in chair for 10 minutes.

The last recent trouble has been finding out through all the scans that my pancreas has atrophied and likely isn’t producing enough enzymes to metabolize my high-calorie diet. It’s nice to have explanation for why I’m not gaining weight, but at the same time the news made me worried and frustrated that another organ is now injured. When will it stop?  I’ve had all these troubles and none are directly related to leukemia. They are all side-effects and side-effects2. Frustrating. But this is the consequence of someone like myself having so much chemotherapy.  Goals for this week and going forward are to eat and walk and get some weight and strength back.

Night time drawing and coloring

Little guy with a green thumb. Holding squashes from our garden.

At the zoo. Alpen liked the Orangutans most.

 Painting night inspired by Eric Carle