Lovebuch family happenings

Due to my lingering cold, that has decided to start giving me fevers in the middle of the day, we have delayed the chemo til Friday. At my appt yesterday, Dr. Cassaday was not pleased when my temp was 101.5. I still wanted to get the ball rolling on the chemo and I wasn't feeling that poor besides the temp. so he bargained that as long as things looked good overnight in the morning I could go in today. The morning didn't start off that good. I woke at 6 am and started a coughing fit that gave me bloody noses on each side. Once I figured out what was going on in the low light and after some blood had gotten on the sheets, I moved to the bathroom for kleenex. At this point I was pretty awake, so I moved to the living room and watched ESPN.  I checked my temp twice this morning, no fevers, so I called the nurse around 9 and she gave me the go-ahead to go in the hosp for the 1pm arrival. But as the morning wore on I felt crummier and then after walking down to light rail, I just ha

We got the scan results back on Friday. There was no detection of disease in the marrow: so I went from barely traceable to not traceable. That’s good news. However, the tumors shrunk but didn’t go away. My right abdomen leukemic mass shrunk to a size of a walnut, the left abdomen showed no activity from the PET scan, so were not worried about that one. Interestingly, the facial tumor showed activity in the PET scan --which I had thought was outa the picture, incorrectly so-- thus we’re assuming this one is still active (although small) We talked about options and decided that the most logical one was to run it back: do the same 28-day EPOCH and Inotuzamab course and see if it will knock the tumors down even more. It makes sense because I tolerated the treatment fairly well -- I didn’t even bottom out for neutrophils this time, and most importantly my liver didn’t flare up.  I still had fatigue and I lost most of my hair so it’s not like it’s nothin. The hair loss was surprising:

Results from the Cytarabine in early October were just OK. The two main tumors in my abdomen reduced by 50%. I was hoping for more reduction, but so it goes. That meant we needed to move on to next steps. Not much in on the table anymore, but the best drug that we haven’t tried yet was Inotuzumab - ozogamicin, a CD22 immunotherapy drug that has been FDA approved in the last few years to treat refractory ALL.  However it has a major downside, and that the potential of a liver toxicity that would rule out a transplant. The odds of the toxicity with the full dose is about 15%, but it goes up to almost 50% if you have had a prior transplant (which I have). So knowing that, I ruled out full-dose Ino. Dr. Cassaday coincidentally just opened a new clinical trial going that is a dose-escalation for Ino combined with a traditional lymphoma chemo cocktail called EPOCH.  I was patient #1 in the trial. Although being first gave me a little misgivings (is it safe? Does it work?), it also meant I

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 be pr

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. And th

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 shop

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 with the e

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 something

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 tha

A lot has happened since the last update, all positive. First things first, as you probably guessed due to lack of writing, I chose to stick with the CAR-t cells rather than elect for transplant. Then a more recent summary of the last 3 months is: First, as far as I know, I am still in remission. Yay! Secondly, I have been working on my spleen issue, and things are going good, but probably more to do. Third, I had good times traveling to Hawaii and Oaxaca, Mexico!  Fourth, in the bird world I have seen 60 lifers (birds I have never seen before) on these two trips, taking my World list to 534. Let’s dive into the spleen issue. A quick review of the situation follows. After meeting with Gastroenterology in December, we figured out my enlarged spleen (19cm, normal is 13cm)  was likely because of a blood clot in the splenetic vein caused by the pancreatitis I had in 2013 or 2015. Maybe both, who knows. I don’t know if I have previously explained the situation in detail, so this c