To Kauai!

Bruised 

Every morning for the past month I’ve gotten out of bed feeling like I was beaten. My back takes a very long time to feel close to normal. I’m constantly stretching and twisting it waiting, hoping for some vertebrae to pop into position. Regardless what the cancer is doing (something, nothing) there is still a tumor behind my intestines the size of a tangerine. I have to assume that is the root cause. I did a week of yoga to test the theory that perhaps it’s muscular, but there’s really no change since then. Yoga is great but only if I’m in the right head space for it (like listening to Pink Floyd), I basically spend the entire time wishing that Shavasana (or, “corpse pose” in English, typically the last pose in a class).

Also as of a few days ago I’ve noticed some fluttering in my intestines on the right side. It’s not painful but perceptible. Impossible to say if it’s related but I’m on high alert for anything untoward.

Finally, I went to the doctor for my toe the other day. She said I could cut half the big toenail which would be about 5-7 days recovery, or I could just wait it out. I wasn’t going to do it. Nope, going to Hawaii without a big bandage on. I agreed to bring antibiotics in case it got infected on the trip.

It’s a marathon, that never ends

I’ve run the Boston marathon 3 times. I’ve been reflecting on those races lately. Specifically about how I approached them, untrained as I was. This is not a complement by the way, but a critical observation. In 67% of them (2/3) I put my head down and just did it. I ran smart races but there was nothing to savor in them. If I’m really honest with myself they were hardly memorable.

2009 Boston marathon (bib: 2502). Running with my buddy Abe.

I attached to the goal and a time outcome and that was it. I’m too good at suffering through whatever it is I sign up for. In that regard being overly disciplined is a character flaw. The only time I remember much of that race was the one I ran poorly. I had shifted strategy midway, from a time goal to an experience goal. The reason was that I started the race too fast and blew all my energy, bonking hard around the 22 mile mark. I walked for several minutes (unheard of!) to see if I could regain my composure. It was that or quit and I was desperate. So, with the time goal out of reach I focused on enjoying the race and noticing things around me. There was a smiling kid on the sideline cheering me on. He was enjoying the race. I figured I was actually running the race so I should do the same!. And I did. One question planted in my mind then is how to move performance and pleasure to the same side of the ledger.  I’m specifically talking about the times where things are pushed to the edge of one’s ability (note: pleasure and performance co-exist just fine within one’s comfort zone). Here, how can I battle cancer while enjoying the process? It’s like a koan.

The solution? Love is the bridge. If you must do it then you must love it. The approach I’ve taken is to find a way to love the process, hard as it is. I’ve decided that for now writing is the best tool available so I’ve been using it to explore this terrain and share the experience. It’s been working reasonably well thus far.

And there is no real finish line. Yes, we have milestones but then there’s another one after that. The end becomes the beginning and the end – looping through an infinite yin/yang symbol – until it stops. So I’ve been trying to stay aware that while the upcoming scan is a milestone I shouldn’t fixate on it. While the outcome here matters (understatement) – it’s the difference between going back to work I love, or back into treatment – I’m trying to remain equanimous about it. I don’t control the damned outcome so energy going outside that perimeter of control is wasted. When my attention drifts outside that perimeter I pull it back in. I’ve gotten so many reps in that it’s almost becoming automatic; drift and yank.

What’s the value of more?

The other night I met a prominent CEO/founder friend for a drink. His company is running out of runway quickly and he was working 18 hour days trying to get funding. We remarked on how our situations felt stressful, stemming from uncertainty – NO!, stemming from uncertain outcomes with known timelines. By necessity our ego has built up various biases that provide a balm of certainty. The big difference is not so much that we’re actually living in more uncertainty than others (though we may be), rather it’s our heightened awareness of the uncertainty – it’s right in our faces. It’s a key distinction.

So I suggested an odd question we both found interesting. In fact, we both thought that if we had a single question to ask this would be the one. What’s the value of more? 

Isn’t it implicitly obvious? More days, years of life, or of business runway is obviously better than fewer. Ok, why? If you pull on the thread it’s hard to come up with a logical answer. Just because. Why life? Just because. Ok then. More is better and thus we should be sad that our lives (or business lifetimes) are not infinite. Indeed we should prioritize longevity above all else. QED, right?

Maybe. But a better argument hinges on the idea of compounding. Why is living longer better? Because you can do more good in the world. Actions and decisions filled with goodness can compound the good in the world and reduce suffering. And conversely evil can amplify, Hitler lived too long.

So, do more good. How? Here’s a non-exhaustive set of possibilities:

  • Have kids. Those kids will perhaps go on to have kids of their own and so on. I often look look at pedigree charts or family trees to convince myself of this power.
  • Spread kindness. Kindness compounds – kindness begets more kindness, rendering the world less scary.
  • Be better, do more. If one is a parent it could mean being more present and aware to raise kids more likely to to do more good of their own. If one is a manager it’s being a damned good one. If one is a friend/aunt/cousin/son-in-law – then do more. You are a mighty lever impacting the lives of your loved ones or subordinates.

Doing good compounds our existence, providing a clear answer to the question of “why more“. Being awake, aware and intentional matters as it helps us be positive models for others and reinforce the idea that the world is good. Call it the case for the Mitzvah (מִצְוָה‬, good deeds).

Don’t skimp

10 days in Kauai!

I booked these tickets to Kauai on learning I have cancer last year. It was my gift to myself and my family for completing 6 rounds of chemo. I didn’t say for beating cancer. The key point is the celebration was de-coupled from the outcome. I can tell I’ve matured because the younger me would think such an idea misguided. The younger me would have been ferociously planning and saving money etc. if the outcome was poor. He would be willing to trade his own experience and suffer through whatever it took for an outcome.

Screw it! It feels indulgent, but if ever there was a time for that now would be a good one. So I splurged. Did I need to book the presidential suite? Yes I did! There’s a time to scrimp and save. Now now. It’s about memory making. If you’re going to commit then do it right.

Mold grows everywhere. Nothing is perfect. Experiences don’t exist in isolation, for us to plug into like modules. There is no party that’s objectively good or bad but what we bring to it makes it so. We don’t just show up places to have ourselves magically transformed. It’s our intention and mindset that matters.

The plane ride to Kauai was pretty stressful. Lua was like a little animal out of her cage the whole trip. Kids were acting up, acting spoiled which boils my blood more than anything – I will not tolerate raising spoiled kids! I was getting stressed. Once we arrived the kids were hungry and generally intolerable. Not sure if I mentioned that I got my phone glass fixed about a week ago after having dropped it (in a moment of clumsy non-awareness) on getting the news that I still had cancer. As I was getting the kids into the rental car, multitasking while holding the phone I dropped it – literally onto a bed of sharp rocks – smashing it yet again.

But in a way it was great, seriously! I looked down utterly bewildered at my stupidity. I was reminded about my tendency to focus on doing over being. That outcome was a function of pure inattentiveness. Every time I now pickup the phone, covered in packing tape to keep the shards intact, I’m reminded to be present. Yank!

Chemolog: day 196

The scans 

Sorry, I left you all in a cliff hanger! My primary oncologist replied that I should sit tight and wait on the scans and not expedite things, that I would get all the radiation exposure without meaningful information if we did this earlier. So I’m waiting. The symptoms have basically stayed the same: still feeling consistent back pain but at least it’s not worsening. And I’m still sleeping too much, 9-11 hours/night. I’ve been unable to wake up before 7am which is very out of character. I’ve heard the effects of chemo can stick around for 6 months, so some lingering poison might be part of it. Also I’ve had mild underlying sickness from the kids. So I’m going to lay low and trust in the 4 aligned opinions for now. I’m picking my battles and laying low for now.

Additionally, about 4 days ago I got an ingrown toenail on my big toe. It’s been pretty painful but not a big deal. I emailed my oncologist, asking what I should do. I finally got a reply today. Though I’m not neutropenic I still need to deal with this. The main issue is that lymphoma is a problem with the immune system. As such infections need to be taken seriously, even if I’m not currently neutropenic (which I’m not). So today I’m headed into urgent care to see what they can do.

And I got the upcoming scan setup. I was able to finagle a bit and it’s scheduled for 3/5, right when I get back. It’s like something out of a bad movie. I can see it cinematically: lush Hawaiian landscape fades out as the camera pans across the shimmering ocean, gently waving palms at dusk. Cut to clinical scene with harsh fluorescent lights glaring on me, as I’m dressed in an ugly medical gown.

Bad movies

Glued to awful movies

Over the weekend the kids had friends over and they watched ‘Ninjago’ (it’s awful on so many levels – I don’t have the patience to discuss here). I can’t believe I’m a parent that allows this stuff in my house. I cozied up with them, eating my homemade popcorn if only to snuggle a bit. One of the subplots revolves around a tense father and his son relationship, akin to the one in Star Wars. When it was over the other kids went to the room but Lev stayed back, lying on the sofa. He was obviously holding back tears, his tiny body has no room to hide large feelings. I sat with him for a few minutes rubbing his back. He put his arms around me, squeezing hard, his smooth cheeks on my neck. Then he started wailing. We probably stayed for 10 minutes like that. He didn’t tell me what it was about, but I know it pertains to my health; these feelings and concerns have to come out somewhere.

After that episode it occurred to me there hasn’t been much crying or discussion around my condition lately. We’ve focused on nuts and bolts (e.g., daddy goes to the hospital today, daddy will be tired for the next few days) after the initial conversation. I’ve tried to keep things smooth around the house to whatever degree possible and to avoid putting unnecessary anxiety on them. Now I wonder if that was the right move, or if it’s just percolating inside them. Maybe we should talk about it more? The last thing I’d want is some unhealthy long term response because we smoothed things over in the short-term. Monitoring this vigilantly.

And to be clear, sadness is a very appropriate response to life. Even if things are great. That doesn’t mean one should mope! But in my opinion reflecting on it helps bring gratitude for what is, and a sense of urgency make things happen. We should strive to be well-calibrated to reality. I appreciated Lev’s openness with his feelings as he struggles to understand them. It seemed really healthy.

Helping others

And it’s been nice to continue getting some feedback on the blog (it’s emotional rocket fuel for me to keep it going). Seems to be causing some nice ripple effects and I’m pleased that this crazy journey can in some way be helpful to others. Here’s my favorite piece of recent feedback. Randi – thank you for sharing this and thinking of you as you get deeper into treatment (and hope this gives you a small boost for whenever you catch up!).

I was connected to your blog through my massage therapist in Rhode Island who is friends with your sis, Ilana. *Thank you* for your blog and for your intimate thoughts and feelings. It has been so comforting and validating for me. Must admit that I haven’t gotten too far in the reading. I am at September, 2018… Oftentimes I will read, reread and read again because the words resonate so much with me. So because I am not at February, 2019, I am not sure where you are in your journey, and I don’t want to “cheat” and read ahead. I hope you are doing OK. You are helping fellow cancer patients, like myself, to *push* ourselves on a spiritual, emotional and physical level. On days when I just don’t feel like pushing, I think of you.

Meantime I’ve joined a few Lymphoma Facebook pages to both get some questions answered, as well as to support others going through this. All the info I’ve been learning seems to be coming in handy to that end. Knowledge should never go to waste.

Getting healthy; more fear of progression; nightmares

Visiting colleagues & getting back to physical health

I biked to SOMA the other day for the second time since diagnosis. It felt great to do my work commute, if only to convince myself for a few minutes that things are back to normal. Also it was good to see I could still do it!

Visiting the team. I’m privileged to work with such wonderful, talented (and good looking!) people. They’ve been amazing through this journey.

I visited with my very impressive colleagues at Tophatter (think eBay, but much faster). It was invigorating to spend a little time catching up on all the projects I’ve been missing. Many of us congregated in the communal kitchen area for several hours – I definitely dragged worker productivity down a good 50%! But it was worth it. I was reminded of the a privilege it is to work in one of the epicenters of technological innovation on the planet. More fuel!

In other news I’ve had my mom in town for a few days which has been great for the kids. They love their ‘damas‘. As a quick aside she is the one that actually kicked off the whole conversation that I should get that mystery mass checked out last year which, very foolishly, I ignored for weeks. She also secured my Dana-Farber connection. Recall it was this connection that recommended the second pathology report. So in a real way I wouldn’t be in the favorable position I’m in right now without her help. Love you mom, I know it doesn’t always come through but you’ve been essential to the good fight I’ve been waging. And all this has enabled my to try and spend more healthy time with the kids.

Spending quality time with the kiddos. Saul’s chess game is getting strong!

Anyway, I bought a 7 day package at a yoga studio the other day at Michelle’s suggestion to see if that helps with my back issues. Since my mom is here, she watched the kids while Michelle and I did a yoga class together. We hadn’t done something like that since before kids and it was physically helpful, emotionally invigorating and a great way to connect with each other. My back felt ever so slightly better this morning. I’ll be taking advantage of this and getting my yoga in as I prep for Hawaii next week.

It’s just what the doctor didn’t order, though I wish he did.

Still, nightmares

I used to reserve the word nightmare for something terrifying that lasted a while. The line between nightmare and non-nightmare was obvious. But I don’t know where to draw that line anymore, it’s so blurred.

For example, take last night. In it there was a scene in which I was flagged by those around me as Jewish (‘vermin’, to be executed) by the Nazi-like society in which I somehow lived. To cut a very long and winding story short I watched the executions happen to others, not me – yet. But they were catching on to me and closing in. Instead of gas chambers (so 20th century) the destructions were personalized. Folks were put into scuba-like apparatus and would inhale the vapors while staring directly, unblinkingly at me. I remember the staring directly at me part since it was so vivid and peculiar. Folks would count the breaths and they would lose consciousness after 8 breaths, plus/minus two, while scientists stood by with clipboards. I remember deciding that I’d prefer to swim to my death if it came to that. Better to have the illusion of freedom than certain confinement if the outcome was to be the same.

In another dream (or scene, hard to say if they were connected) I was actually swimming in the expansive ocean. Then suddenly the surface breaks and it caves in a giant waterfall with the destructive power of a hydrogen bomb. I’m instantly sucked into the great ocean depths, falling for seconds (another peculiarity, remembering that). But it didn’t kill me. The deafening roar of massive waters rushing past fills my head. But I was still, miraculously, in the world of air. I was inexplicably living in this hostile and environment thousands of feet beneath the ocean. How else to describe this but that I was in a state of complete surrender. And I was just waiting – at any moment the tides could shift and consume me – was it a matter of seconds? Enough to hatch an escape plan? Or should I just savor my last moments?

These kinds of nightmares used to affect me deeply. But now I look on as an observer, mostly amazed at the stuff my subconscious comes up with in attempts to make meaning. The underlying content is of course a reflection of my current position and is so thinly veiled as to barely require interpretation. No, what’s frightening to me is the lack of impact such stark dreams elicit; I don’t think I’m numb but sometimes I do wonder.

These upcoming scans are clearly causing some anxiety. That extra energy seeks manifestation. I suspect dreams are the lowest energy solution for such expression to occur given that (it seems to me) the ego shuts down in that state. That anxiety can bypass whatever defenses my ego has devised – cortical Maginot lines. The fear of cancer progression is real. Still processing.

 

 

Symptoms?

I’m slated to get these scans done early march. That is, unless I ‘feel symptoms’. Simple, right?

There were three symptoms specifically that I noted just before my diagnosis last year: blockage (constipation, due to the tumor’s location in bowel area), a specific kind of dull back pain due to the tumor pressing on nerves (not unlike pregnancy I suppose), and fatigue. Put me down for 2 of 3 in the past couple weeks. I’ve been on edge as I monitor. For example in the past week I’ve slept 12 hours at least three times – unheard of for me except if I’m sick. The most troubling piece is that every time I stand up I feel this dull pain in my lower back/pelvis area. The only time I’ve felt this type of pain was last year just before my diagnosis. And I’m constantly feeling my abdomen for evidence of tumor. The other day I realized that this might be for naught. It occurred to me that since the tumor is now placed somewhat differently that perhaps it could be growing in different locations – perhaps more towards the back than the front.

These are not encouraging developments. But they’re also not quite enough to get me over the edge to expedite the upcoming scans. There are rational explanations. Lua (2 years old) has been having sleep regressions since moving her in with the boys (yes we did that a few weeks ago and it’s been mostly amazing, dumb luck I think). Anyway that might have something to do with the sleep/fatigue. For example last night I was up for two long stretches from 2am to 3:30. Also I’ve caught whatever has been going around recently from the kids – mild, but still. I’ve been exercising more to build up my strength and I want to believe that’s the cause of the back issues but I really don’t think so. I’m going to try doing more active stretching and light walking etc. to verify it’s not just a muscular thing.

Regardless of these explanations there’s also trepidation (I don’t want to say fear since that doesn’t quite resonate as I’m not deluding myself). I can tell that monitoring this is definitely eating up some mental cycles. I want to enjoy a few weeks of relative normalcy and minimal stress before very possibly jumping into more intense chemo/treatment. The thought of doing another biopsy in case of a poor scan is not palatable right now. Also, and it sounds trite to say, but we’ve had tickets to Hawaii since last year (I booked them just after getting my diagnosis) coming up end of April on Saul’s school break. We haven’t had a family vacation together in quite some time and it feels necessary. Recall our December family holiday was interrupted by my surgery.

I’ve emailed my doctor about this to see how he would think about it, the obvious question is what’s the downside to just doing it now? I haven’t heard back yet but to answer my own question: 3 months is not a long time as far as these things go, hence expediting would increase the likelihood of a false negative result (meaning that the scan doesn’t show meaningful progression because we didn’t wait long enough). That would not be good.

I’m trying to be honest about what I’m feeling, if only to convince myself not to be willfully blind about this. Obviously if this is aggressive then I’ll deal with it immediately. My trigger event at this point is that if these ‘symptoms’ persist or worsen for another week I’ll likely press the issue and move to expedite the scans.

 

Creating pause

The fear and anxiety come in waves. Most of the time I’ll feel fine. Them BAM!, that cold rush of reality overcomes me… I have cancer! And I can tell my mind wants to go in that direction, to charge with that energy. It’s like a strong-willed child pulling a feeble adult towards the shiny thing. A moment later it’s like I have a backpack filled with rocks reminding me about gravity. Then, the complexity of all that I MUST do, should have done, should be doing NOW rushes in. I’m nearly overwhelmed.

But I know how to meet this feeling. We’re well acquainted. I meet it with a deep inhalation; a circuit-breaker. What else can I do? I’m getting a lot of practice at making that space, creating a pause. And I’m grateful for the practice since it helps push these unhelpful feelings away. This is definitely not an innate ability. No, this is forged from experience. And I’m getting lots of reps.