Yesterday was my birthday. I find that as I get older these matter less (sounding like my grandmother). The past two days have been rough. Tuesday I spent basically the whole day in bed. My body ached and I could find no relief. I feel like my legs have lost all their strength and are now rubber. I think I figured out that it’s the G-CSF injections. Basically those migraines I was suffering a few rounds ago came back but distributed to the rest of my bones. I’m fairly certain that’s what was going on. And yesterday more of the same. Felt like a zombie and tried to just sleep it off. Started to feel better in the late afternoon. And just in time. Michelle brought Burma Superstar home for dinner (one of my favorites). But first chocolate cake and candles.
This stands in stark contrast to last year when we had a gigantic bash in the back yard. Obviously circumstances this year are different, not to mention the terrible air quality. So it felt like a win to actually get out of bed and enjoy it a bit. What has become apparent regarding expectations is that they are fully controllable (duh!). Satisfaction is found in a reduction of needs. It means feeling grateful for what one has and recognizing when things exceed that bar. This notion is not at odds with setting aggressive targets. Those are important. But I think it’s about understanding one’s perimeter of true needs and finding a base of satisfaction there; no sense getting upset about not winning the lottery! Recognize and celebrate it as upside. It’s about the delta between actual and expected. One insidious cause of suffering that I know all too well is this idea of ‘should’. Should takes a person outside of the here and now and flips this delta and for me at least results in the opposite effect – thoughts of scarcity. Something like this:
a true needs mindset (gratitude, abundance)
what you have – true needs = high
a should mindset (fear, scarcity)
what you have – what you should have = low or negative
I caught a second wind after dinner so Michelle and I decided to go to a meditation around the corner that she found. It was all I had energy for and it was questionable I even had enough for that. We donned our N-95 masks and walked around the corner. This must have been the most low-key birthday on record: chocolate cake, nice dinner, birthday cards from kids, meditation. I thought I’d be stuck in bed. This was extravagant.
This is a quick thank you note to Ruth Bader Ginsburg. Thank you for taking a few minutes out of your day to write in. You inspire me.
Michelle ran upstairs screaming over the weekend when she saw the envelope header – “Supreme court of the unites states”. Turns out RBG caught wind of this blog – we dressed Lua up as her for halloween – and she wrote in! I must say I was familiar with some of her work on women’s rights as a supreme court justice but wasn’t familiar with the details – or the breadth of her reach. So I went ahead and watched her recent documentary which is fantastic. So here’s what inspires me.
You embody a rare combination of humility and power. Your physical stature is no impediment to the clarity and resolve of your purpose which shines through in your work. Through that tiny frame you have changed the world.
You have clearly defined your life task and have not wavered from that orientation throughout your very long career. I cannot think of a person that better embodies the concept of Tikkun Olam. And thanks to your efforts my daughter’s opportunities will be significantly better than they otherwise might have been in this great country. You have changed our society for the better.
Your work ethic, working until 4am with prune juice and coffee at hand is fantastic and inspiring.
You’re down to earth! You certainly have more important things to do but regardless you took a few minutes out of your day to reach out. Thanks for reminding me (and my family) how little it takes – a quick note – to make a massive impact on someone’s life.
I heard about your recent fall. Wishing you a speedy recovery and thanks again.
The past few days post chemo have been ok for the most part. Significant fatigue continues to be an issue. And I really haven’t been exercising much as I’ve been biased toward staying indoors as the bay area air quality is abysmal from the Chico fire. While we’re here other physical symptoms include: neuropathy (fingertips are tingly), taste is way off/most foods taste bad, periodic shortness of breath, I haven’t vomited but have been feeling nauseous at times (especially when I smell certain industrial things like printer ink or tape). Bloating on the days I’m on prednisone continues to be an issue (chart below) – I gained 8 lbs overnight again – despite trying to up my potassium and reduce sodium. And in the days post chemo I can feel the tumor site again; I think it’s the drugs acting on the site which I find encouraging. Oddly what I notice too is that if I find myself getting stressed, e.g., the kids or similar, I can feel some activity manifesting there, kind of a cramping, and I back off and try to relax. While perplexing it is an extremely clear feedback system – it’s like a warning system that I need to check myself. Bodies are sometimes smarter than we are and I listen to it.
Round 5 was smooth
My friends Ali and Joseph joined me, along with Michelle and Lua. I also had my original chemo nurse, Thea, on point. As horrible as these sessions are for me I actually do cherish them as means to connect deeply with people. I’ve come to consider my chemo treatments as sort of sacred events.
These sessions really make the experience meaningful. It reminds me of the Western wall in Jerusalem. Whenever I go I’m struck by the same thought: it’s a bunch of ancient stone – what are all these people getting worked up about? But it’s not the stones or the site itself that matters so much as the community manifesting at a site and expressing their shared beliefs. You can feel the energy when you go. Shared meaning and community matters. I feel this meaning during chemo in the form of love and support. Each day in this treatment I’ve been totally overwhelmed with community. I’ve never felt such support – it’s life affirming.
It’s hard to believe I’m heading into round 5. Still feels like a bad dream. I really want off this ride. I just got more blood drawn to check my white blood counts. I’ll be curious what the level looks like as they were low last time. Worst case is we need to postpone the treatment because it’s too low. But I don’t think that’ll happen as I’ve upped the number of G-csf injections from 5 to 7 (that should be enough according to the docs).
An emotional test
On the way over I stopped into the same coffee shop as where I got the news that I definitely have cancer. I was curious what I would feel now that I’m more than halfway through. Would I have PTSD or some negative emotions walking back in there? Answer: no. So what do I recall from spending a very tense 90 minutes here?
First, here’s what I did that day after being told I have cancer
Amidst the obvious sweaty palms, shallow breathing etc. I first I got out some paper and listed my most pressing questions for the oncologist. Then I called Michelle. She was obviously very shaken but stayed calm. I told her I would head home in a bit. I called several folks at work to let them know. The kindness and empathy I felt when telling them the news was powerful; it was like ok, we’re going to get through this together. Amazing. Next I wrote a list of people I wanted to let know immediately. Frankly it was less about letting them know and more about feeling I needed to talk to some people (limited to 5). I could tell I was starting to get worked up and needed perspective. I spent the next hour or so processing the news with cool-headed people I trust, admire, love. Note, cool-headed matters. I could not have conversations in which one side was spinning into a froth on getting the news (unless it was me). This was all hard enough without the additional anxiety of potentially stressing people out at the start of a workday.
You control your experience. Own it and make it good… even if you think it’s horrible.
This all raises an interesting point of reflection. Events themselves need not dictate our experiences. I didn’t control the news I got. But in retrospect I’m quite pleased with how I handled the news. It’s incredibly empowering to consider that holding ourselves to an inner scorecard of conduct is a good way to bypass the random insults of universe. The test is asking myself if I had to do it over again, would I play it the same way? Answer: yes I would. So the retrospective emotions I feel from that morning are not about the horrible news I received. Instead I feel deep satisfaction and gratitude for:
Having such amazing circles of colleagues, friends, family that I can lean on
Staying reasonably calm, making a plan, and following through on it
Having the good sense to get out of my head
That’s what I feel and what I remember. After those calls I felt like I had climbed – or got pulled – out of a very steep ditch. That got me into a better place to proceed.
As I stare down the barrel of round 5 this post is me taking a moment to celebrate a win (historically not a strength).
This is pretty straight forward. They inject you with an IV contrast which causes a warm and flushing sensation, along with a metallic taste in the mouth. You then lay you on a table and raise the arms overhead like a military surrender. A large white machine fires up a terrible whirring sound. It then starts moving over the body. I close my eyes. A hollow recorded instruction: “Hold. Your. Breath”. I hold. The machine passes along my pelvis to chest area. “Breathe”. I don’t. Instead I continue holding my breath to slow down my pulse as I visualize packets of ionizing radiation ripping through my DNA.
At the end of it I thanked the attendants. The main guy was an older Chinese man. He remembered me from last time and showed kindness in the form of small gestures and smiles that can restore one’s faith in people. Anonymous hospitality and kindness are so important; rays of light from the void. I went back into the changing room to remove the gown. I sat there unwilling and unable to move. I was overwhelmed with the feeling of how little control I have in this situation.
More patient self-advocacy
I was told by my patient coordinator I would get results Tuesday evening. Two days later (yesterday) I was on the phone getting the runaround from her backup person. They wanted to schedule a call Friday evening because that was the only 10 minute slot they could find. Seriously? I tore into this poor patient coordinator letting her know exactly how unacceptable this situation was. Someone dropped the ball – or worse/more likely, didn’t care enough about the patient experience to follow up – and it was not acceptable.
Onto the results – some good news!
While I had been waiting for the results from my CT scan for 2 days, in actuality I’ve been anticipating this moment since the start of this treatment. Few things are as frustrating as pressing on in some direction with absence of objective data.
Finally yesterday afternoon I got some good news – an email from my oncologist.
He told me the treatment response is solid. There is no new disease and the tumor shrunk significantly. But there the cancer isn’t gone. It would have obviously been better if I was cancer free at this point. The issue however is I started with a high “tumor burden”, meaning lots of cancer cells (again, I started this in stage III). It would have been unreasonable to expect that good a result by round 4. So things are working but we need to press on.
Moving forward the plan is to stick with the original plan. So that’s 2 more rounds and we’ll re-assess then. The biggest change is we now have some objective data that we’re on the right path. And I have some peace of mind that the treatment is working.
Yesterday was Michelle’s birthday. I was concerned it was going to be bitter sweet if the news was bad. But it was good – so here we are double-celebrating at Chez Panisse.
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.
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.
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.
The infusion itself was smooth. These are becoming routine. Michelle joined me and I had a new nurse, also excellent. I must say I’ve been very impressed with my Kaiser infusion nurses – they’re consistently great. Continue reading chemo round 4 recap→
The whole thing is starting to take on a routine feeling: take my prednisone and anti-nausea drugs in the morning; head in to that familiar room on Geary st. for my infusion; head home and either sleep, or feel wired from prednisone. Continue reading Chemo round 4 – this morning→
My weight is back to normal. I dropped 6 lbs overnight on Monday, then another 4 lbs on Tuesday. Easy come, easy go. I feel back to “normal”. Feels like a (small but meaningful) win to be able to predict my weight flux and the underlying cause. Data tames anxiety. Continue reading Chemolog: day 58→