I got home and felt like I was slammed by a wall. I just slept. Then I slept more the next day. The plan now is to recover from this last infusion for a few weeks. I just scheduled my CT and PET scans for later this month (17th and 18th). So I should know my status by end of Dec. I’ll fly east to be with family for about a week for the holidays.
Do I feel relieved? Yes. But that relief is eclipsed by a feeling of overwhelm at the thought of these upcoming tests. These will determine if I’m on the other side of this or not. Have I won the battle only to continue the war? Am I cured? Will I need to evaluate other treatment options if the cancer is still active? I’m on guard. It’s kind of a mental limbo that I’m contending with. Oy! But today I feel great so screw it. Now I’m back on the prednisone and zarxio injections to boost my immunity. The weight gain seems less severe than last rounds thus far. Lua and Lev helped me with my injection this morning. They were so excited; Lua said she wanted a shot too!
In terms of a recap on round 6 I couldn’t have asked for more. My colleague and friend Matt joined me for the whole time, taking time off of his insane schedule. Was wonderful to catch up and talk about deep life topics (as well as life sciences!) for a few hours. Matt – if you’re reading this your strength, resilience and attitude in handling adversity inspire me (I’ll leave it at that). It really meant a lot to have you there on this last round.
Thea, my original chemo nurse popped in a few times to say hello though she wasn’t my actual nurse that day. Towards the end, a nice surprise – all the nurses on the floor came in started blasting some music on someone’s phone and started dancing (really bad dancing!). It was a very sweet gesture. They all signed a certificate of completion – you know, the kind you get for doing nothing more than showing up. It a nice way to mark the end of this chapter. Thea asked me to come back and visit. At one point earlier she suggested I come and talk to some of the newer cancer patients, something about my attitude. I may take them up on the offer.
So now it’s a waiting game for a few weeks. Staying positive.
Yesterday I met with my oncologist. My body’s response thus far has been extremely strong. He took a look at me and said that even for people my age going through this specific protocol I’m looking stronger than most. So that’s great. We looked at the CT scan, at a cross-section of my abdomen, and saw the before and after images. Before: looked like I was pregnant with a large mass pushing all organs to the side (explaining clearly my back pain at that time). After: mass still present but significantly smaller – measured in mm’s vs. something over 13cm across a side at the start. I started with so much mass in my abdomen that getting rid of it fully would be very unlikely in his opinion, despite the excellent response.
So there’s a fork in the road coming up. Once this round is completed there are two dimensions to assess next steps: mass size and cell activity. These are measured by CT and Pet scan, respectively. Inactive mass is still ok. Think of it like scar tissue from the mass. And it’s small, I can’t feel the tumor with my hand anymore. But he has seen cases in which the mass actually increases in size toward the end of treatment (my jaw dropped when he said this). While we both consider that unlikely it is unnerving to consider just how complex these systems are – and how quickly we approach the brink of our understanding when peeling back the onion even just a layer or two. For all our knowledge, built brick by brick so to speak, in these conversations one can almost peer over the edge into the abyss of our collective ignorance.
Anyway, if there is still cellular activity post round 6 that means my current protocol isn’t getting the job done and we need to evaluate other options. I’m trying to get that Pet scan scheduled for December but these machines are notoriously hard to get appointments for. At the latest I should know early Jan about the status.
Regardless, today will be the last round of this protocol. Yes there’s a looming set of decision points up ahead. I left the office a bit unnerved as I fixated on outcomes. But that was short-lived as I reminded myself there’s no point thinking about it too much. I’ll focus on the happy path. And isn’t it always the case that we don’t know what’s around the corner? How boring if we did! It’s just that sometimes we are made aware of the complexity. So screw it. I’m ready to do round 6 and finish with this chapter. And I WILL celebrate. Never mind what’s around the corner.
A stone is thrown into the air. It splashes into the river below and sinks to the bottom. The speeding water rushes over it creating ripples and vortices. The rock remains unperturbed. Wounded animals find a cave and rest. They stop to fully recover then get back to it. So too with chemo. Pause and rest. Recover. That’s been my internal mantra for the course of this treatment. In fact it’s one of the harder parts in all this; remaining unperturbed while the river of society – perhaps best represented by the Facebook newsfeed – rushes by. There are days I feel ok enough to convince myself it’s all a bad dream. Chemo? I’m fine! But I’m not. At least not yet. Knowing, committing to pause runs counter to my disposition. It certainly runs counter to the society we live in. We don’t stop, we speed up! But a small voice inside tells me it’s a good thing. It’s necessary to support healing. So that’s what I’ve been doing. Pausing for a while. Being ok with that.
I might have thought I’d be celebrating at this point. Nope. Been really tired the past few days and every day have woken up thinking I might be sick. Haven’t had anything resembling a workout (nothing more than a walk) in 2 weeks. Have felt like my immunity is down (tingling in my jaw, fatigue, starting to get a fever blister, overall weakness). I’m oscillating between mindfulness, staying present to the experience, and anxiety to push hard to the finish line and to get on with things. Pushing is bad in my current condition; stress and immunity travel in opposite directions. I need immunity. Maybe it’s the smoke and being cooped up too long, driving with a family to Tahoe, general life. But I’m ready for a change in conditions here. I’m ready to be strong. So – I take a deep breath and try to go the other way.
So one more planned round. I keep saying planned because who knows – tumor isn’t gone yet. I’ll meet with the oncologist on Tuesday to get a better sense of what’s next and how to think about contingencies, e.g., what if the tumor isn’t gone after then next CT scan? Do we tack on another round? Do we change the protocol? Something else?
We made it! Average speed was 90 mph. Lua refused to wear her mask so I just sped through. I was also feeling quite aggressive having been cooped up so long. And as one astute reader noticed in the previous analysis (this blog way over-indexes on astute readers) the 3.5 hour estimate was too pessimistic, it’s more like 2.5 hours since the air cleared around Placerville as one ascends to the mountains. That turned out to be about right. When we go there I opened the windows and tore off the mask – AHHHHHHHH!!! I’ve never appreciated fresh air so much as the past few days.
3:12am the next morning. The steady hum of the heater soothes my mind in contrast to my otherwise inconsolable body. I crashed around 8:00pm last night. My lips and nose are severely dry from the combination of clear mountain air and blasting heater. I purse my lips them to minimize contact with the dry air. I’ve been doubled over with stomach cramps from, I think, the burrito I had from dinner (the black beans seemed undercooked but I let it go; perhaps someone didn’t get the memo that black beans cooked at an altitude of 6k feet need to be in longer). I was huddled under the covers trying to get whatever warmth my body could generate: I had turned up the heater, put on a hat, breathed fast. Nothing was working. The only other time I had this inability to thermo-regulate I wound up in the ER. And I’m again concerned that’s where I’m heading. It’s been misery from 11:00pm. Every modicum of relief was a hard-fought battle. Every shift of my body was the dull ache of an old man…
The next day I tried getting out of bed a few times only to realize I was barely coherent and in a stupor. I stayed in bed basically the whole day through early evening. But my fears didn’t manifest. I bounced back, slowly regaining my faculties. No fever! On reflection I suspect this might have been altitude sickness. Which would be odd because I’ve camped at higher altitude without issue. And I’ve run a race in Boulder just 1k feet lower without a problem. Perhaps it’s the combination of chemo and altitude? I don’t really care right now. Just glad that’s behind me.
Apart from that the trip has been great. We’ve been with our friends Sean and Beth and their similarly aged kids. We head back today to hopefully cleaner bay area air now that the wind and rain are coming.
The SF bay area has among the worst air on our planet lately and it’ll continue at least through most of next week from what I can tell. So we’re leaving for Tahoe this morning. There’s only so many days of being stuck inside that a family of 5 can handle – kids need movement, as does this parent. Also Saul is on vacation next week and school for Lev may be cancelled as well based on trends. And frankly we’ll get a much needed vacation for a few days. We likely won’t get another one this year so I’m justifying it as an excuse for some family R&R. We contemplated going to Boston for a week but I don’t feel comfortable being that far away from my doctor or hospital in case of infection or fever etc. Also flying is out of the cards for me. Going to Tahoe is about as far as I think is reasonable given these extraordinary conditions.
I’ve basically been stuck inside with barely any walking etc since these fires started and I think it’s having an effect on my body too. While my lungs feel fine because I keep the air filter going full strength basically all the time, I did start getting some terrible back pain the other day, probably from lack of movement (it’s certainly NOT from overdoing it on strength training – you have to actually strength train for that to happen – and that hasn’t been happening lately). Felt like I slipped a disk but this morning it seems to be ok.
So with that decision made my main concern in leaving is the actual drive. It turns out that cars are only partially effective barriers against pollution (despite what I thought before looking into it). At least one study showed the most effective strategy for reducing in-car pollutants is to keep the AC on, cutting around 30% of the outdoor pollution; basically the cold surface attracts pollutant particles before get into the circulating air. So if the outdoor air quality index is, say, 180 as it is this morning (“unhealthy”) that means inside the car it’s ~125 (bad for sensitive groups like cancer patients and kids), better, but still worse than staying at home. So we’ll want to keep the masks on while in the car. No, actually that’s only part of it; leakage as a result of poor fit, as one would imagine, is also a consideration (with kids futzing in the back that’ll definitely be an issue!). So let’s say worst case the masks are only about 50% effective at cutting those pollutants because kids protest mid-way, adjust them etc. That brings us down to an in-car AQI of ~65 (“moderate”), for about 3.5 hours. Not great but I think tolerable. Likely it’ll be a bit better than that. We’re basically trading off a few hours of bad for hopefully very good on the other side. The key here will be keeping those masks on. So, bribery!
In a moment of divine inspiration I introduced Saul to “Pong” on the iPad. He’s been playing it (or talking about playing it) nonstop for 3 days. He’s also now totally into chess. Between those two games he can easily get through a car ride. And yesterday I took the boys to the library to pick out monster-sized star wars and lego picture books. I also took out a bunch of cd’s to play in the car as kids music in the car really starting to wear on my soul*. As an aside here (it’s Sunday morning, indulge me) I haven’t taken out cd’s from the library in so many years. As a longtime Spotify user I’d nearly forgotten the joys of physical cds: holding the plastic case, seeing the cover, making kids carry the objects home. The biggest benefit though is the anticipation. As much as I love online services like Spotify there is absolutely ZERO anticipation because I can have EVERYTHING RIGHT NOW. Ironic right? But it’s true. I need to allocate brain power to thinking about those albums as I decide which to listen to, take them out of the case, insert into cd player, turn up volume etc. There is the design of an intended experience, and then there’s the manner in which folks actually experience the edges surrounding it. Important to consider both.
So we have lego books, cds, old school video games: check, check, check. In short looking forward to getting out of here and being in nature for a bit. Keep you all posted.
*Really, who thought infinite plays on kid music was a good idea? I mean if you’re going to donate then sure. But who does that with cd’s anymore? Idea: introduce a times-played counter onto kids cd’s. Some limit is set by the manufacturer, say 20 plays, after which the cd becomes unplayable. Or, maybe better still, the cd starts getting horribly scratched. Kids don’t usually like horrible scratchy sounds (except when it’s coming from their own mouths). So it’ll be their idea to never play it again. And I’d submit that a scratched cd is no worse for the parent than listening for the 65th time to the music together hello everybody song. I want no proceeds. Just someone please make this happen.
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).