The upcoming CT scan

This Tuesday I’ll go in for a CT scan. We need to compare this scan with the original from before the start of treatment. This will tell us if the chemo is working. At one point my oncologist mentioned that it’s possible there are different cell types, some of which might show resistance. I actually don’t want to know all the details of how this can go wrong. As with most things in life there are fewer ways in which things can go right and countless ways in which they break. For now I’m not interested in probing (what I hope are) low probability rabbit holes and freaking myself out. There’s nothing I can do about it anyway. Let’s stay positive!

In Judaism the holiest day is Yom Kippur – the day of Judgment in which it’s said that G-d determines who will live and who will die in the upcoming year. It’s an extreme mental construct meant to shake us out of our glazed-over walk through reality. And this test does bear some similarities in terms of what it brings up for me. Is this crazy path I’ve been on having the intended effect? Or is there yet something else lurking in the weeds? I’m doing what I can to visualize success and at the same time prepare for the worst case – whatever that might look like.

And while I’m optimistic about the outcome of this test (as is my oncologist) I’ve been doing a great job finding new things to worry about. For example over the past week or so I’ve had a mild cramping and what I can only describe as a fluttering sensation around the area of the tumor (kind of like when your eyelid spasms due to fatigue, but in my abdomen). I find myself holding those areas, as if clutching the uncertainty helps. It’s weird because I’ve been thinking that this tumor has been shrinking – so why am I suddenly feeling it? When I sleep I try to place my hands on the area and visualize the tumor melting away.

In lighter news we’re prepping for halloween. The other day we carved a jack-o-lantern, got costumes for the kids, and visited our local pumpkin patch. I may try to get out to walk around. I think I’ll be be Heisenberg from breaking bad – good way to justify being in a crowd while wearing a mask without freaking people out.

Dose of cuteness: Lua tries on her Ruth Bader Ginsburg halloween costume
With Eli at the pumpkin patch


Chemolog: day 76

Yesterday was one of the worst days yet.

It started out great though. I got up 5:15am and drove to Kezar stadium to do a “track workout”. Actually it was the best morning I’ve had in a long time. I parked in the dark night lit by a few yellow lamps and did a meditation for 15 minutes before getting out of the car. Then I got out and walked to the track. I was the only person there. I was cold so didn’t bother taking off my jacket for the run. I did 2 miles total (including lots of walking), carefully monitoring my heart rate to stay in the 130 range as anything above for more than a minute or so makes me feel like I’m pushing too hard. Then I did a handful of 100 yard striders once I felt warmed up. It feels good to break in my muscles and chest a bit. It’s interesting how strong my body signals are. I can barely pull off 100 yards at a heart rate of 150 beats/min without feeling my chest revolting against my will. So I would pull back to whatever I could easily tolerate. Just doing easy bursts of 50-100 yards felt really liberating.

Something about running in the lanes of the track is just so cathartic. Just being in the moment, in movement, one foot in front of the other while pondering the underlying complexity of our physiology that makes it all possible. I suppose I’ve picked an in-opportune time to get the running bug. I’ll try to continue this practice of morning track workouts if I feel up to it.

But late morning I just crashed. Not only physically but mentally I was a mess. I was moody, hungry, frustrated, tired, hyper-critical and unfocused. My mentality has been rock solid this whole time so I don’t like it when that gets perturbed. I’m fairly certain that the transitions on/off prednisone are a big part of it. I can’t wait to be done with those. In addition I could feel the area around the tumor site acting up. I haven’t felt this since round 2. It was like a little animal scurrying around – very odd and kind of scary. Hard to tell if this was this good or bad. To be honest it felt more like my anxiety acting up than the drugs, but who knows. I ended up crawling into bed early afternoon, then I got up and mindlessly ate some food, then I went back to bed. The kids were playing in the other room and it was a beautiful day outside. I wanted nothing more than to get up and just be with them. I couldn’t help but feel like life was passing me by. But there was nothing I could do about it.

Let’s end on a couple of high notes because today I’m feeling good:

I’m now off prednisone for this round. Below is what the weight gain situation has looked like thus far. I was concerned that round 4 would be worse than round 3 but that hasn’t been the case. Let’s hope it stays this way for the remaining 2 rounds.

Weight gain on prednisone by round. My baseline weight is 144 (dashed black line). Hopefully round 3 was the worst of it.

And I’m of course continuing with the zarxio injections. I’m no longer getting headaches. I’ll brag a bit in saying I’ve achieved professional status as a self-injector! No more flinching or fidgeting. I don’t even get anxious about it. Actually I now look forward to it. Why? I allow myself to look from a new vista onto how I was and how I am now – less fearful. It’s a simple action yet a powerful reminder of progress I’ve made on a very simple and tangible effort. What took me at one point an hour now takes a minute (I now consistently am done in under 60 seconds, from alcohol swab to injection). Lua and Lev have been great motivators too.

I’ll go further in saying that the process of self-administering these shots actually inspires me. They remind me that true progress is possible if only we stick with things and are willing to do honest work to improve.

Chemolog: day 55

October! Apple picking, halloween, pumpkin patches, crisp fall air. I typically love this time of year. Except that I’m now definitely into round 3 and I’m slogging through this thing.

Saturday I woke up really bloated. My normal weight is about 144. I got a shock when I stepped on the scale and it read 152 – up 8 lbs literally overnight – my highest reading yet. Then Sunday, 154! My face has been flushed and swollen. It’s obvious this liquid is retaining in my skin, belly and joints. Continue reading Chemolog: day 55