Lovebuch family happenings

The hospital discharge went fine. I got out Saturday morning as expected. I had some great visitors while in the hospital which made it a much nicer stay. Zach, Rahn, Ben, and Dan came by on Friday afternoon and we played “Bang,” a fun dice game. Briana soon followed that. And then post dinner, Louis and Kevin came by for a chat. All the attention made the time fly and thankfully I was feeling good enough to enjoy it. Surprisingly I slept pretty well too, despite the stress and the steroids. My many nights have taught me that a good eye-mask is a hospital essential.  Then on Saturday morning, Spencer, my oldest friend, popped over with Jackson, his 1 year-old, again proving that a hospital room is not a great place for a curious waddler. Great to see him and his kid tho, despite having to make an early exit. Later on Saturday, we went to a solstice party of one of Briana’s co-workers in West Seattle. Alpen went up to Edmonds to stay with my mom, allowing us the freedom to both b...

Things have taken some unexpected turns for the worse in the last 3 weeks so I didn't want to write until we closer to the bottom of it.  Short story, my leukemia has been feeling restless and has set-off out of the bloodstream to colonize new soft tissue territory throughout my body. And then multiply there. This is not unusual for this Leukemia to take on this lymphoma form. And it doesn’t often change the treatment either. The tumors respond to chemo and immunotherapy just like their counterparts in the bloodstream. Technically my disease is Acute Lymphoblastic Leukemia-lymphoma, so it’s not leaving its wheelhouse. I’m glad I have had some experience with a tumor as to stop me from really freaking out. I had a tumor behind my ear in 2017, an even scarier location being in the CNS, that dissipated with a few rounds of steroids and methotrexate to the CNS.  But currently, a CT scan done yesterday of my abdomen and chest show multiple pockets of tumors throughout the region. A...

In the hospital at the moment for at least next 3 nights. Lots to say here, so could be a long one, could be heavy as a warning. Firstly, to follow up from last week, unfortunately we had car trouble on our camping trip as soon as we got to camp. So it started with being 2.5 hours away from Seattle with a dead car battery, an acting up transmission, and no cell service. That certainly put a damper on things. Thankfully, my brother and Suzie showed up that night as scheduled and we were able to jump the car in the morning and drive out. We got home fine, but took the car in on Tuesday. It was still fun to get out and glad we did it, however it fell quite a bit short of our expectations for the trip. We spent the way back trying to figure out if we needed to get a new car, as this was not the first time the Volvo has had issues getting to a trailhead.  We figured if a car can’t get us to the trailhead, then we need a new car. So driving back on highways is a great time to s...

Being on break has been great. I’m finally almost over my spring-long cold, the weather has been super nice, and I’ve gotten back to pre-hospital shape. Last weekend, the bay area crew came up to visit (Kevin G, Hannah, and Petey) which was a super fun, easy going, weekend. Our main event was taking the water taxi to west seattle to walk around. It’s a great day-trip if you have folks in town and looking for something to do in Seattle For healthcare, I’m scheduled to get back in the hospital on Thursday Aug 8. The next 28 day cycle will also start with a hospital stay, although this one should be shorter. Unfortunately, it will still be 4 days which will mean I’ll miss all of the Obliteride weekend. The grandparents (Marian, David, Peggy, and Byrne) have a team this year and there’s a couple events that I enjoyed last time, that I’ll miss this year. If you’re interested in donating to cancer research you can support their team here : http://engage.fredhutch.org/site/TR/Obliteride/...

Home! I got out on Tuesday. Getting around pretty well. Had an SCCA appt the day after I got home to get a dressing change on the PICC line. Sounds simple enough right? Not anymore. The blinatuzomab line needs to run continuously and it also has extension cables so I can access it myself to change out the bag.  Changing the dressing with the blin running wasn’t the issue, it was what to do with the extension cables, which get changed out with the dressing change typically. I had had the teaching on the day before, but I don’t know, I blame it on the fever, I kept drawing a blank on what to do with the extension cable once I was in the chair getting the line changed. The nurse was trying to figure out what to do too, and we both sat there and brainstormed.  It’s a bit complicated to explain without a drawing, but basically we were wondering how to prime the new extender line after the blin bag has been started. After some back-and-forth, we ended up waiting on doing anything w...

Still in here.  Been having a bit of a rough time. Many episodes of Grade 1 CRS (cytokine release syndrome) with fevers almost nightly and sometimes during the day. Some of the early days, I slept so poorly because of the fevers and the dexamethasone, I couldn’t do much but lay in the bed and try to get some sleep the next day. My liver inflamed at 48 hours and that meant stopping the drug over night until things improved. They did, but according to protocol, a greater-than-4-hour-stop requires another steroid assisted start.  So another 20 mg dex and we continued forward. I transitioned to the higher dose of Blina on time, but almost instantly had more high fevers. At this point I was still hopeful that the fevers would leave and I would get out on the 3rd. That turned to 4th, and then the 5th. Then I accepted my fate and knew it was gonna be more like the 8th or 9th. The silver lining is the CRS reaction is the body’s response to killing leukemia cells. So it’s proof that ...

I’m back in the hospital and it sucks. Well the situation sucks, the hospital is a good thing - safe environment to take this new drug and a big room: I’m back in 8SA with a montlake view. Getta see the sailboats and crew teams practice throughout the day. I’ve been here for 3 days already but was too feverish and tired to write. My nurse last night was the first nurse I had in this unit back in 2012. We both remembered each other because I was her first patient in a brand new unit (I was the first patient in that room) and she was my welcome-nurse to UW, so memorable for me.  We’ve both aged and now have 2 year-olds. Just another clock of how time passes. Now for the situation. After our trip to Mexico in March, my bone marrow came back with 0.06% cancerous cells. I was really hoping to get a year out of the CAR-Ts but I only got 6 months. Just like the transplant, 6 months remission again. The presence was startling cause I felt fine--you can’t feel cancer loads that low--but...