Last night I gave a talk at the Lymphoma and Leukemia Society (the LLS) at the Sales Force tower. You might have heard about them in context of Team in Training, or their Light the Night events. The LLS is a great organization providing access and information to blood cancer patients around the world. Thanks to my friends that were able to come out and support!
I usually like to be prepared for these kinds of events. I had written up some notes but ended up scrapping it last minute and speaking off the cuff about my experience. It just felt more appropriate to talk about cancer while throwing the script out the window.
I get asked this a fair bit, including from the doctors so I figure it’s worth posting (I also wanted to check myself to see if I stuck with what I said I would do, turns out it is consistent with an earlier post). Let’s start this with some caveats. This does not constitute medical advice. I generally followed Pareto’s law (80/20 rule), not getting fanatical about really anything. Generally what I’ve been doing is based on my readings of the literature, common sense and always via the lens of what works for me. What works for my body could be exactly the wrong thing for yours. That said I haven’t seen much negative evidence for any of this. For example I considered the Ketogenic diet after reading much about it re: curing cancer and etc. But on reading deeper into lymphoma specifically there is evidence suggesting possible negative effects of high fat diets. Also the studies I’ve read on Keto were mostly for solid tumors, I could find little to nothing on blood cancers. For that reason (and frankly the impracticality of it, especially with kids) I didn’t go down that path despite some initial interest.
What I can confidently claim is that in aggregate the below definitely had a placebo effect, might/might not have had some physical effects, and definitely did not have negative effects. With all that said here’s what I did most of the time:
Things I did consistently:
Green tea basically all day long. I brew it extra long so it’s extra bitter, frankly kind of gross.
fast until noon OR one meal at the end of the day. I would say I averaged 4 days/week pretty consistently here. My weight did not fluctuate much, interestingly. I also found that once I made it until noon that was highly predictive of going the full day until dinner. What the heck, I’m already here and I’m not hungry. I’ve always hated eating lunch anyway (slows me down), so actually it’s pretty easy.
If I did eat breakfast it was oatmeal. I can eat this all day long. It’s not your childhood sugary oatmeal. It’s steel cut/quick oats with cumin, turmeric, pepper, cinnamon, coconut oil, raisins, walnuts. Maybe a drip of honey. Gets me through the whole day many days. This might be an acquired taste but I love it.
Turmeric and pepper/oil on basically everything. Michelle is grossed out by it but I love it. That includes, soups, salads, oatmeal, stir fry, etc.
Workout a lot. That included track workouts, climbing (one evening/week with my friend Sean), strength training, etc. I workout most days fairly intensely.
Meditation/visualization. I’m not fanatical about this – walking in the woods counts. I would sometimes visualize the cancer melting away or otherwise being defeated. I would also visualize challenging scenarios (sometimes called negative visualization) considering worst case scenarios, often in vivid detail, toward getting myself present and appreciative for what I do have. And to prepare my mind for any eventuality. It’s not for everyone.
Things I consistently avoided:
No dairy (the occasional ice cream with turmeric turns out to be quite nice though).
Alcohol, though would drink with friends on occasion. Bonding trumps the negative effects of alcohol, assuming it’s moderated, IMO.
Low protein, almost no animal. I really cut most animal protein from my diet. For example I used to eat scrambled eggs for breakfast more days than not. They don’t work for me anymore. Fish on occasion. Chicken rarely. Beef almost never (but still if I feel like it). Overall my protein consumption is probably half of what it was before and I don’t feel any worse for it.
Coffee has been on the uptick lately after a big cut from what it used to be – my default is still mostly green tea.
I never was big into processed foods and sugar so that’s been a mainstay of my diet. Refined sugar is the enemy.
I’ve been existing in this limbo state for a while. It’s been a particularly stressful day or so of waiting. Getting these scans has a way of making the abstract idea that one is sick much more concrete.
As I mentioned in an earlier post, the other day I was feeling down with all the future planning parents around me were doing. I held back from planning anything, all the while thinking, hmm, there’s a real chance I’ll be in treatment while you’re doing that awesome thing.
So I got the results yesterday. Kaiser sent an email. It wasn’t clear to me how to interpret what they sent over (I guess the lesson is when you train your doctors that you’ll go into all the details yourself they don’t even bother walking you through it!). Still I wish the medical profession, especially oncologists!, would give this event it’s due. Some people call it Scanxiety, and it’s real. You should not simply send a patient an email even if you’re busy, even if the news is positive. This requires some bedside manner. This is not the point and will be a totally separate post.
So I called them to follow up. The nurse told me that all is clear. There is no ‘metabolic’ activity. I was about to thank her for the news but realized I was choked up. I couldn’t speak. The tears exited my eye sockets and gravity dropped them from my face, pebbles. Then an avalanche. This wasn’t shock (shock has a way of blocking emotions). No, this was relief. It all spilled out and I couldn’t fight it. Didn’t want to.
In contrast, nobody in my family was surprised at all, including Michelle. I had been stressing over these scans for months. It was weird. Everyone said the same things, that I looked too healthy, was too positive. My perceptions offered a stark contrast. To me: (a) my back still hurts suggesting residual tumor, (b) periodic flutterings in my abdomen were reminiscent of what I felt previously (are the cells morphing?), (c) with months of distance from chemo treatment, those drugs are flushed from my body, so the cancer could take root. All reasonable, albeit speculative, over-corrective biases of a mind that’s overly attuned to bad news, I guess.
While I trusted the first scan result part of me really thought it was a fluke. That the real scan, the validating scan, is the 6 month scan, the one I just had. And for the first time in a great while it actually feels like I can REALLY get on with life. Like I’m walking out of prison. I now believe that I’m healthy.
Michelle and I did a date night last night to celebrate.
Yesterday was a strange day. The sun was shining. Still feels like summer. It was Saul and Lev’s official first day of school: Lev to kindergarten, Saul to second grade. I mentioned in an earlier post that we’ve moved across the bridge to Piedmont. So we’re in a new home, a new school district and all is well.
Except that I also had my 6 month scans in that familiar trailer. The juxtaposition of normal/happy life with this disease is almost overwhelming. In the morning I was chatting with the other parents and sharing excitement about the school year, logistics about after school programs, enthusiasm about our teachers. Hours later, instead of picking the kids up from school, I was getting injected with radioactive isotopes. I sat quietly, doing my best to still the mind from the swirl of future-oriented thoughts. Not much else to do. The timing just worked out that way and I don’t really feel like changing it.
Oddly, the familiarity of this position seems like a kind of home base. As much as I hate this process, my relationship to it isn’t antagonistic. I know that if my results are bad that I’m prepared to fight. I’ve done it, frankly at this point it’s a part of my identity. Actually this state of purgatory is the most anxiety-provoking. I can tell its been affecting me, thought I don’t like to admit it. And my thoughts go out to the millions of folks that need to deal with this on a regular basis. It’s excruciating. I do my best not to let it control me but it’s clear there’s background anxiety eating up cycles.
I did a hypnosis session the other day with a friend who is getting certified in it (she’s a top notch psychologist in her own right and taking on new skills). It was actually quite powerful, not because she put a spell on me or anything like that, but rather she enabled me to go deep into my own memory banks with skillful guided imagery; helping me pull dusty memories from forgotten shelves. One observation that stuck with me, largely because it was visceral/kinesthetic, in which I imagined some challenging times in high-school. I thought about the anxiety certain situations provoked. And the incredible part was that I felt that emotion manifest in my abdomen, around the location of the tumor. I don’t think I’m reading into it but there is a connection there worth exploring. It’s an interesting practice.
All of which is to say these appointments, this whole process, serves as a reminder. I find value in it. I’m forcing myself to but I also deeply believe it. We are mortal and fragile beings. So are our loved ones. It’s easy to forget or it would probably occupy all our thoughts (we would not get much done). And so I don’t see this as a diminishment of my experience but rather as an enhancement. It adds value to my life in the form of imparting gratitude and helping me get present. Value is a function of perception.
I’m not sure the right way to approach this whole process. What I know for certain is that what matters is extreme honesty in going through this. It’s scary. I’ll deal with what comes. And I can’t sugar coat any of it.
That’s not a typo. I have my 6 month PET/CT scan coming up next week. I find myself existing in two simultaneous mental states: in remission or recurrence? Am I healthy? I told my doctor to get it scheduled asap. As much as I want to put this off (I really do) there’s really no sense in doing so. I need to face this thing head on. Thanks for the nudge to just do it Eli!
Last weekend I flew to Colorado to visit my brother Eli. We made good on a promise before my surgery in December to go camping when the ordeal was over. We climbed a 14k mountain, starting the day at 4:45am (ok, we started at 11.5k, but still!). It was great. He has a camper van that we slept in by the side of the road. I was pleased that there were no issues to report. This felt extra great given that I got altitude sickness going to Tahoe just a few months prior. So I’m feeling healthy.
Next week we’ll open the box and find out what the CT scan has to say.
What a shame to not fully bloom. Fear, apprehension, self-doubt cripple us. And they are an insult to our unique gifts. Because that part that wants to express is true, good and should live (even if the output is imperfect!).
Remember the morning demon that demands your review of the future day. It asks: would repeating this day be joyous, or miserable? That seems as good a scorecard as any in deciding what good one will make of the day.
Our days take on a rhythm. That rhythm might be inertia, based on days past. It might be twisted into a pretzel by the school or business culture. Or maybe it’s the rhythm of no rhythm, each day totally novel to bash routine. The day might be filled with wonder, or with trepidation. But whatever it is know that you have the space to change it if it’s not working. If it’s squelching the gift. Will you do it intentionally, or reflexively? Perhaps a set of rules would help.
if lethargic then walk
if overwhelmed then belly breathe for 1 minute
if indecisive then get action
There’s an African proverb I heard from Jack Kornfield (a well known Buddhist teacher) in a talk he gave a few months ago:
Children are born with a precious cargo. It’s the job of a parent to help them deliver it.
The blockers to ensuring this happens are many, individual as fingerprints. But underneath most of them is a dampening of enthusiasm. How might we ensure that self-doubt, the (likely imagined) judgments of others, or anything else doesn’t creep into their psyches? Can you hear the brakes screeching?
If you’re a parent (even if you aren’t), try not to forget that you too are a child with cargo that needs delivering. A good way to ensure children can get there is to show them how. Let’s model that delivery process.
Here’s a quick update since it’s been a while and I’m getting the itch to write again.
There have been quite a few (great!) changes lately: I’m back at work; we moved the family to the east bay; kids are thriving. But I’ve also been feeling some uncharacteristic anxiety lately. I was attributing it to ‘life’, then it occurred to me that while all that is true the underlying reason is it’s an anniversary – a year since I was diagnosed (cancer is murky and these timelines are approximate; I had symptoms July 4 vacation then started chemo on 8/8). So this time last year I was going through a battery of scary tests to figure out what was going on. I have visceral memories of the uncertainty of it all. While I’m overall feeling quite excellent physically I do find myself often checking my abdomen, feeling for growth. Is that a lump? Am I cured? Am I fooling myself? The pangs of anxiety are good reminders not to take things for granted. This is a marathon involving both psyche and physique. These are not in equal proportion – for me at least the former is much more demanding.
The thing that really stands out in reflecting back on the year is my support network. This was my unfair advantage over the disease: friends, family, colleagues, even strangers. I well up with gratitude and consider myself among the most fortunate men alive.