New years eve – and finally a win!

Pick a good dream.

The anesthesiologist tells me this is her only requirement. This task was not as easy as it sounds. I found myself getting slightly anxious about not having catalogued my dreams. What if I don’t wake up? What’s the last thing I want to be thinking about? How could I not have a ready playlist of good dreams? I had never really indexed them in any proper way!! fool! I ended up thinking about Michelle, the kids, wedding day, births, hikes in nature… then my mind drifted to something physical, kinesthetic, visceral – sailing on the Narragansett bay on a small craft (a sunfish). I could feel my bodyweight dance with the wind and water. My right hand clenches the cold, rough wet rope as my left hand holds steers the boat holding the wooden tiller. I was “hiking out” leaning back against the top of the boat to keep the forces of wind on sail in balance as the boat hummed along (when you do it right the hull literally does make a humming sound). I liked the contrast of physical/sensory embodiment and finger tip feeling (Fingerspitzengefühl) against my current state of immobility in bed. But I wasn’t yet ready for dreamland so I came back to reality.

I was still in the pre-op area. My brother Eli was with me having flown out from Boulder the day before. He brought a book by Jesse Itzler who goes to live with Christian monks. He was reading aloud to me to help calm

Eli keeps my spirits up!

my nerves. I couldn’t stop laughing at certain parts. For example his account of biting into a crispy apple in a room of quietly eating monks (as if they were in a silent movie). We were both howling in laughter when the guy next to me, behind a curtain, starts wailing in pain (couldn’t tell if it was mental or physical but it sounded like he was quite literally dying). I kept shooting glances over to the nurse like – you want to give this guy something? I felt simultaneously excited to be getting on with this (now that I we had a solid strategy after a week of stressful planning), as well as hyper anxious that I was going to be permanently injured in some surgical error. Anyway the decision was made and I always feel relief when shifting from strategy to execution mode. Now we can focus on the fight. So now it was a waiting game and all I could do was keep calm.

I jotted down some notes in my black notebook (that never leaves my side – I’m naked without it).

Live each day as the last (cheesy but true); light against the dark of nothingness. Let the day emerge as pure joy, you need only allow it to happen for it is existence. And while the arc of life may be suffering, the moment is joy. Polish the mirror and seize the gifts as they are abundant. Dwell less on earthly stressors (you do that too much). Safety/security is found in goodness & love, not the social contract. Continue your seriousness & purposeful conduct – it matters. But the key is to anneal purpose with lightness. Remember this feeling of impending nothingness, of the looming knife cut, as you conduct your affairs. No time to overthink – Act! You will emerge from this successfully. 

The Surgeon Dr. A came in dressed in civilian clothes. He looked like a regular guy that I would have met for a coffee. We spoke for a few minutes. His manner was soothing. I felt again comfortable with him, as I did on the call a few days prior in which we discussed attempting the procedure laproscopically. I asked if he would mind speaking with my friend to which he readily agreed. I called Charleen (my surgeon friend) and they spoke for a few minutes. He walked her through the concerns and details (very candidly, which was actually awesome as he wasn’t hiding anything). He handed me the phone after and she gave me her vote of confidence and wished me luck. I thanked them both. He then left and said he’d see me in a bit in the OR.

The nurse then placed an IV in my arm. I’d have skipped this piece of the account as routine except that after about 3 seconds it was obvious she did a poor job with the placement. She then struggled to push it in while I started heavy breathing to deal with the searing pain of her snaking that IV into my vein. 30 seconds later Eli tells her she should give it up and try again in a different spot. As readers by now know I have little patience for this kind of thing, so I said: “Listen, I’ve had 6 rounds of chemo and countless blood draws and not once has an IV hurt this much. Can we please get someone over that’s more skilled in this department?”. To her credit she calls over another guy, her manager. He places it in about 10 seconds with no pain – done. Thank you! Eli jumps right back into more reading and laughing – exactly what I needed.

Ok – we’re ready. The nurse anesthetist then loosely placed the molded plastic mask over my face. It’s just oxygen. They wheel me from the pre-op area to the OR. Large automatic doors spring open as I move deeper into the operating theater. White light everywhere. Each room gets progressively colder. We get to the final room. I’m comfortably laying on the bed. They placed warm blankets over me to offset the cold temperature. I’m certain the temperature doesn’t fluctuate more than a degree or two and think for a moment how I’d design a study to optimize OR temperature for maximum performance. I quickly turn my attention to the surroundings and instruments in the room. Lots to take in; all this for me. Maybe it was the propofol (had they injected me?) but I was feeling quite relaxed. I fixated on the large light that looked like a circular array of nubbly crystal things. In my peripheral vision I take note of the personnel. The team goes around in a circle discussing their checklist items. In my last post I mentioned that I wanted to think of surgery more like a pilot flying a plane. And here they were implementing the best practices from flying (as referenced in the excellent book, the checklist manifesto)! Once they completed their round (basically the equivalent of a standup in the tech world) I removed my mask and told the team that witnessing this was very confidence inspiring. Then I wished them all good luck, placed the mask back over my face and inhaled deeply of the sevoflurane.

That was it.

There’s a moment when you wake up from surgery when your world is suspended between various possibilities. Was it successful? Did something go horribly wrong? Am I in one piece? ….

Me: Opening my eyes I see a faint outline of blond nurse. I soaked up that moment of uncertainty. No pain. Good. I knew I lagged behind reality. How did it go?

Nurse: Dr. A. was able to get the needed tissue sample. And he was able to do it all laproscopically! No residual damage – it was clean. You have 3 small cuts in your abdomen. It was a great success. We’ll keep you overnight. You’re very lucky.

I let the news sink in for a very long moment. I’m so used to getting horrible news these days that it took a few extra beats to process the magical feeling that something went well! I floated on a cloud of joy. I’m still floating as I write this days later. This was the second surgery I’ve had in my life but certainly the most involved (first was a hernia repair which is routine). And it was the scariest. The nurse and I then spoke for probably 15 minutes. I talked about how satisfying it was to have put together a quick model that suggested pushing for this direction; how amazed I was with Dr. A., and how now all I wanted was to see Michelle and the kids (they’ll be landing soon!).

That evening as I recovered in a private room I was totally high. Eli was exhausted and I kept talking and talking. He must have told me to shut up (nicely. But how are you not tired! what’s wrong with you?) about 8 times but no matter. On and on…I was so happy to be alive and functional. Had we gone with the open surgery approach I’d have been in the hospital 5 days to recover. Then It would be 3-4 weeks of further recovery at home (no lifting etc). Instead because this was done laproscopically it was just an overnight stay and ~10 days no lifting. And I would go home to celebrate Lua’s 2 year birthday! Meantime my friend Abe grabbed the car and went to the airport to pickup Michelle and the kids (thanks Abe!). What a team effort!

The next morning the surgeon came in and we de-briefed. He was very pleased about how it went. He paid me a complement for being diligent and pushing for laproscopic. He said that MOST of the time this kind of procedure ends up going open surgery (called laparotomy) but it worked out very well. I thanked him again for his incredible bedside manner, his flexibility in approach, his willingness to take a few extra moments to talk to my friend, and his skillfulness in getting the job done. I then asked him why the procedure took so long (>100 minutes vs. estimated 60) given that he didn’t have to cut me open. He said that most of the time was actually spent on the phone with both the oncologist and pathologist. He wanted to ensure he got exactly the right tissue from the right spot and that he got enough for them to do their jobs. I was blown away. This guy is a 10/10 and to me reflects what a professional doing a job right looks like. Sometimes my faith in people gets restored. This was just what I needed. Talk about good fortune!

So this is a terrific win and I will celebrate it for all it’s worth. I got home the next day and was already walking around (painfully, but still). We celebrated Lua’s birthday with cake – the big payoff!

This was just a step with many more to go. The tissue will now be interrogated with flow cytometry (to sort/assess various cell populations), and various cell staining techniques. I should get those results end of this week or a bit after.

Just before going in. Feeling anxious.
3 bullet holes. And it feels like it. But the alternative would have been WAY harder.
On the way back from Boston – wishing me well (they were in the air as I went into the operation)
Happy birthday Lua!

Biopsy today

Today is the day – heading into the hospital shortly for the biopsy. Eli is here helping support me – he flew in from Boulder last night and it’s amazing to have his company. I’m still anxious to get this done. Getting this scheduled during the holidays has not been easy. I’m also nervous in part because I’ve seen this kind of routine surgery go wrong. My father was injured and had to retire early because of a surgical slip-up on a fairly routine procedure. My head goes there – it’s probably why I’m such a pain the butt so meticulous when it comes to this stuff. But that line of thinking isn’t helpful now that the decision is made. Now is the time to let go, have some faith in the surgical staff and stand on the confidence/knowledge that I’ve done what I can within reason. I might do better in considering surgeons as the professionals they are and equivalent to pilots (high rate of taking off and landing well!). Optimizing is hard, time consuming and stressful and it’s hard not to second guess ones-self in a situation like this. Questions swirling: have I done enough to ensure an optimal outcome on this specific procedure? Am I being hasty? Should I have waited until after the holidays and done a more exhaustive surgeon search to get the very best one? How much signal does one need before trusting something like this? Do I have enough signal? …etc. 

While I don’t want to look past this particular piece of the journey I’m also being practical and biased towards getting this done quickly; key decisions about the next line of treatment hinge on this information. Getting second opinions scheduled is also non-trivial – in some cases it’ll take 4 weeks to get setup so already I’m feeling pressed against the clock. I felt comfortable on my call with the surgeon the other day (good phone/bedside manner!). I’ve seen no strong reason to NOT proceed at this point.

Trying to put my nerves to the aside and focus on keeping things calm. Below is Lev in his surgical outfit sending me good vibes – I think it’s helping. Maybe this ordeal will serve as inspiration for this little one.

The biopsy – tomorrow

This week has been filled with surgery consultations, calls with nurses, logistics etc. I ended up skipping the trip w/family to Boston because I needed to deal with this biopsy decision, consultations and etc. I was originally scheduled to have it done yesterday (wed) but that moved to Friday (tomorrow). So I’ve been flying solo for a few days which is both good and bad. Good because I can tie up some loose ends and get stuff done around the house and catch up with some folks I haven’t seen; bad because I’m not with family during the holidays – which is a real bummer despite facetime/technology.

The biopsy is much less straightforward than expected. Turns out the location of the tumor they are sampling is non-ideal. Specifically it’s attached to the mesentery which supplies the small intestine with blood. Injuring this area would be bad. So the original plan was to needle biopsy this area laproscopically using 3 ports: 2 for navigation/cutting, one for visualization. But a needle would poke the tissue blindly too close to that area. Another surgeon available looked at the scans and suggested doing this open where he can use his hands and stem any bleeding manually. Why screw around? This would be a 6″ cut down my abdomen – WAY more invasive than originally planned, or than the original biopsy. But potentially safer despite 2-3 weeks of recovery. Ugh!! This is a balance of safety vs. recovery vs. getting the best sample possible. And of course all this is in the bigger context of time and planning. Again I want this done asap. There is no perfect in these kinds of situations.

I requested a call with the surgeon that wanted to open me up. The surgeon and I aligned yesterday on a compromise – he will first attempt to do this laproscopically. But he will not use a needle but rather some other cutting tool. If he gets into trouble or can’t get a good sample he will then shift to open surgery. I put together a quick model below to ensure I wasn’t missing anything glaringly obvious and that this approach makes sense.

In the model laproscopic w/open scores close but higher than just doing open surgery. I basically combined the 2 likely outcomes of lap w/open to derive a single score for the decision to go with this approach. Note that lap w/open specifically means starting with laproscopic with an option to switch to open surgery should a) complications arise, or b) the surgeon can’t get a good tissue sample. I think the decision output makes sense despite the weightings and scoring system being complete SWAGs (medical friends please chime in if I’m missing something obvious; one example might be inclusion of surgeon quality though I really haven’t been able to find a way of assessing this except back-door knowledge through other surgeons which is obviously time consuming and not scalable). Based on this I don’t see a strong argument to ONLY do open surgery. As I see it the main way this model could be off is if I’m grossly underestimating the risk profile of the laproscopic procedure, e.g., regarding intestinal damage (which would require a resection) or bleeding, but based on conversations with 2 Kaiser surgeons and one friend who does this kind of thing (thanks Charleen!) I don’t think this is the case.

Meantime the whole family is in Boston. They’ll return on Friday evening. My brother is flying in tonight to support me while Michelle is out and to help with all the things that need to happen (e.g., transition to/from hospital) – whenever that is. This is supposedly outpatient but if they move to open surgery I’ll likely be staying overnight, possibly more. So there’s a very real possibility I’ll be spending new years in the hospital. And for sure in lots of pain.

The other day I treated myself to a movie – first in I can’t remember how long. I saw free solo on Christmas. This was the perfect movie for me to see given my situation. I cannot recommend it highly enough, whatever you think about the ‘sport’ of free climbing (lots of people plummet to their deaths). The one sentence summary is Alex Hannold climbs El Capitan in Yosemite without ropes becoming the first person ever to do it. But this really doesn’t do the film – or the staggering accomplishment – justice. The stakes are perfection or death. The cinematography is phenomenal. But what’s most interesting is the mindset and psychology of such a feat. And the training and strategy to prepare himself. He essentially breaks up the wall into 6 main sections. He works each one with ropes until his comfort level is so high that it totally eclipses his fear (a quite fascinating way to think about fear). There is a fundamental and raw element of the human spirit on display. This is worth watching if only to check your own values against someone who likely differs from you in significant ways. For example he is non-materialistic (lives in a van), abhors comfort (obviously), and is willing to risk his life for what he loves (would you?). I found myself relating to him despite our significant differences. Going through cancer one realizes how precarious life is. This type of rock climbing heightens that sense and I suppose that’s a large part of the appeal; living on the edge quite literally. Anyway as a metaphor for life it’s perfect. At one point he says his main value is performance and the warrior spirit, while his girlfriend values comfort. It’s interesting to see how this psychological oil and water mix.

The test results (a punch in the gut)

Not great news.

The first line treatment hasn’t worked. While the cancer has shrunk significantly, based on the CT/PET results it’s still there and active. It’s in 2 locations – so far as I understand these are sites that were already active. That means cells are either mutated, resistant, or maybe something else. I now need to get another biopsy scheduled to see what cell types are present. Based on what I took from the conversation with the oncologist this is what next steps look like:

  1. Complete biopsy/validate resistant cell types
    1. Biopsy – This must be done with a more invasive laproscopic biopsy (whereas before it was done with ultrasound guidance). The reason for the more invasive procedure is because of the risk of hitting nearby organs, and that the tumor is so much smaller than before, so targeting is non-trivial. The tumor was large before that they could just go in with a needle guided by ultrasound but that won’t work for this context.
    2. Analysis – I’m really not sure exactly what analysis is done on the tissue samples: pretty sure they do some ICC staining and I think FISH. Had a conversation with a friend about potential for tumor sequencing but I’m not clear if this is a) something they do, or b) if it’s even useful. But I’ll inquire as I’m curious about this.
  2. Define approach
    1. Get second/third opinions (gated by getting the biopsy done)
    2. Triangulate various opinions, pros/cons, and decide course of treatment
  3. Depending on (1, 2) but based on current thinking proceed with 2 rounds of a different chemo protocol
    1. GDP+Rituxin (the current recommendation vs. RICE, or other second-line chemo protocols). The idea is to target cells w/different drugs to bypass possible drug resistance.
      • The Oncologist claims there’s a high chance of success here (still a binary outcome)
    2. Each round will take 21 days as with RCHOP, and it will be even more intensive.
  4. Validate responsiveness with PET/CT to new chemo treatment
    1. if successful then go to (5)
    2. if not successful then try other protocols (or …?)
  5. Complete autologous bone marrow transplant (that means using my own cells)
    1. harvest my cells (this may happen before chemo above – not sure the sequencing). The purpose of this so far as I understand it (poorly) is more about replacement of my compromised bone marrow due to all the chemo exposure vs. some type of curative procedure.
    2. Do the transplant
    3. Go in daily to monitor – I think this takes several months, and I’ll be immunocompromised throughout. This would all happen at Stanford.

This whole thing, assuming it works etc, etc will take on the order of 6 months. I remain optimistic, as does the oncologist w/r/t the chances of success here (though his use of the word ‘devastating’ on the call might not have been the most prudent word choice… perhaps one day our medical AI overlords will display greater ability to induce calm regarding these types of calls).

So I’m doing all I can, taking this one step at a time and trying to stay calm/present. It’s a mental adjustment. At this point I’m focusing on tactical stuff like getting the biopsy scheduled, which is proving challenging due to the holiday. I’m not comfortable tacking on an extra 1.5-2 weeks on this whole effort as the cancer is still very aggressive. I’m pushing hard to get this done asap.

So the next part of this adventure is starting soon. More to come…

chemolog: day 135

Today is a big day: it’s my grandmother’s funeral, it’s the last day of school for the year for the kids, and I get my test results. If I were a superstitious person I don’t know if I would think this is a good or a bad thing. It’s a good thing I’m not superstitious. I have a call scheduled with my oncologist this morning to review the results. I want to think positive thoughts but I’m remaining pragmatic. I need to be prepared for either piece of news and remain mentally prepared. To be too positive going in would be a hard blow in the negative case – that is, if the cancer is still present. That’s all I have to say for now – trying to stay present and note all the thoughts coming and going.

 

 

Goodbye Grandma; PET/CT scans

It’s been an eventful past few days. Here’s the latest.

Visiting my Grandma for the last time

I was feeling great early last week and was doing a lot of visits with folks, went into the office and saw my colleagues (felt normal for a few hours) and was able to catch up with others. I really thought I was over the hump. Starting Tuesday afternoon though I was back in bed feeling weak and tired. Wednesday, more of the same. By Thursday I was sure I was coming down with something. I had gotten news that my grandmother was slipping and that it was now a matter of days or weeks. I booked a last minute ticket to the east coast. But a few hours before the flight I really wasn’t feeling strong and thought it unwise to fly (to be clear it was not wise regardless but I decided the tradeoff worth it). So I delayed it a day in hopes that a good night sleep would help. I definitely came down with whatever everyone has now but I think my body is fighting it well enough (no fever).

On the way to seeing her I jotted down the memories, talking point bullets in my notebook: the warm feeling from sitting on the carpet as a kid, the smell of spaghetti and meatballs permeating the air on a random weeknight; coming over for breakfast across the driveway for Kasha; etc. I wanted to sit with her and share those memories, I knew by this point she wasn’t likely to be lucid but still, maybe she could hear/recognize my voice. And I could remember. I must say that I didn’t have that flood of memory that sometimes happens. I really had to dig to get those neurons firing – it had been a long time since they were active. I find that as time passes my ability to remember childhood events becomes harder.

On the way to Rhode Island from the Boston Airport I stopped to buy nice shoes. It was kind of a weird idea but I realized that showing up with sneakers to see her (perhaps the last time) was simply unacceptable, disrespectful even. What kind of an example had she set when her oldest grandson visits in sneakers? She was that kind of lady – elegant, dignified and poised. And she was always ready for action – feisty, decisive. As a younger lady (maybe late 60’s/70’s) she would give the RI mayor’s office a piece of her mind (in impeccable handwriting) about all the litter on the street. And when after the third attempt they didn’t clean up that grungy intersection on Allens avenue, she literally parked her car, got out, picked up the litter and put it in a trash bag herself. That’s how she operated. One day, years after my grandfather had died, she just decided to sell the house she lived in for something like 50 years because, “why do I need all this?”. Once she decided a thing then it was done. “Ari, when you make a promise it’s a strike of lightning” she told me as a kid, and that always stuckShe would also tell me things when I was a bit older, like, “you cannot squire a lady like Michelle dressed like a THAT“. Yeah, sneakers wasn’t going to cut it.

I arrived in her tiny Rhode Island apartment nestled in an assisted living home. She was always one of the most energetic and awake people there, light in a drab place. Several family members were there as I arrived: aunt, nephew, etc. They told me she was in her room and that I could go in and see her. As I walked into her sunny room overlooking the Seekonk river I was struck by the transformation, the delta against my last memory of her. Her skull is tiny and motionless in the large bed.

I closed the door gently behind me. I wanted to be alone with her for a few minutes unencumbered by social norms, expectations, or frankly, even words. Just to be with her and provide some comfort (if possible) to a dying woman who to me personifies quiet dignity. She is also the person who has been the most stable fixture in my life. But she is no longer the woman I’ve known.

I walk to the bed and orient myself to this reality. Here lies death. Wisps of white hair are still on her head. Her face is tilted 45 degrees left and up, as if reaching for something. Her mouth is awkwardly open. I suspect her head has been in roughly this position for some time. I sit down on a basic chair beside her medical-grade bed (the kind with adjustable settings to go up/down etc). A blanket is pulled to several inches below her chin. She is roughly facing me as I sit. I study her face. The only hint of the rest of her body is the skeletal collar bone I can see just below the blanket. Her body is so emaciated that her jawline sharply protrudes against her wrinkled neck like a fossil against striated rock. She must weigh 70 pounds. She is pale as plaster and her eyes are closed. Her body has it’s own agenda to live despite the lack of movement. The mechanical workings of breath and pulse form a somewhat jarring backdrop to her stillness: the jugular vein pumps like a locomotive; her breath is steady, though labored and involuntary. It’s musical. For a while I marvel at the machinery underlying my grandmother.

My eyes drift. I notice the scene outside the window. A carpet of yellow leaves below barren winter trees and branches. The river is calm and I think for a minute what old age and dying was like for the Native American tribes that were here first. The room is a mixture of sculptures, family pictures, paintings and small accumulations from the years. These things don’t matter so I come back to present.

I was dumb to think I would talk about memories and good times etc. That’s the last thing I want to do. Instead this is visceral. Instinctively, as with a child, I reach over to stroke her hair. I tell her that it’s me; that it’s ok and that we’re all here for her; that we love her; that my kids send their love to her. I tell her it’s ok to relax. I don’t say much more. Just stroke her hair and try to be present. At one point I quietly said the שְׁמַע יִשְׂרָאֵל (Shema Yisroel, one of the most important Jewish prayers). Maybe I didn’t notice it at the outset but as I looked at her face again I noticed moisture – yes, a tear – in one eye. That single, nascent tear was welled up, trapped in the folds of her eye. I was sure I’d have noticed it from the start. Perhaps it was just what happens. But I took this as a sign that she, or some part of her, was still there with me and perhaps she was more aware than her appearance would suggest.

She would not want this. She would have ended it years ago if she could have. She would have taken a pill and ended it on her own terms, as she lived her life. She even told me she wished she had this option several times. That’s how she did things, decisively. She decided she didn’t want to live years ago. The problem is her body was too strong. All I can do in this situation is to provide comfort to the dying. I wish for her to go calmly, painlessly and peacefully. And quickly. There is nothing to hold onto.

I left the apartment with my aunt and uncle as the hospice nurse stayed behind. We got dinner. I said my goodbyes and felt like I had done what I came to do. There was nothing left. I shifted my focus on the living and what would come next for the family. This is the family matriarch and the glue holding things together. We went to dinner and discussed logistics – what the first 30 days look like after she passes, e.g., funeral prep, selling her place, etc. It was kind of cathartic to discuss all these things openly. And yet kind of strange to mix the mundane with the biological.

I spent that night with my uncle in Portsmouth RI (beautiful place if you haven’t been). The next morning he told me that she passed last night. I was both sad and relieved. More relieved actually. I was pleased to have had the opportunity for a brief yet meaningful goodbye and to be there for her in some tiny way. The next morning I went to see her for the last time. Her face had changed dramatically. It was no longer positioned in an awkward way. Her lips were closed and I swear there was a slight smile on her face. Certainly there was a peacefulness about her. It was amazing to see. If my presence in any way helped then taking a two day trip when not fully recovered from my last chemo infusion, then it was completely worth it and I wouldn’t trade it for a thing.

The scans

Yesterday I went in for back to back scans. These are the ones that tell me if the cancer is gone or not. The CT scan will look at the anatomical part – is there still a mass there. The combo PET/CT scan will answer if there’s any activity/active cancer cells. I’m somewhat surprised at how I’m not too emotional about these tests. Perhaps it’s because I don’t control the outcome. Not sure but I’m not complaining. Now I wait.

Amusing myself in the PET holding area with a quick experiment. Here’s the Geiger counter held up to my chest vs. the test admin’s after injecting me with a radioactive tracer. Guess which is me.

I should amend that last statement. While I’m managing to stay reasonably calm about the results I am frustrated with Kaiser about the small things. In this case I showed up for the PET drinking green tea. They had to call the doc to ask if it was ok (it is). That amounted to 10 minutes of uncertainty that I didn’t need – the thought of rescheduling the appointment was too much. The issue is the Kaiser appointment reminder provides no instructions for these tests – never mind the green tea – they don’t even tell you to fast – and therein lies the rub. The tech told me that this kind of issue happens all the time in some variant or another. Really how hard would it be to write up a single description of do’s/don’ts and put it in the calendar reminder? AARGH! More feedback is on the way. Again, the medical technology is amazing, but the practice of medicine – riddled with poor human judgment – or more likely lack of thought/diligence/attention to detail – can be infuriating.

The PET administrator was great. We had a lively discussion about the effects of radiation on the body. He was less pessimistic about the negative effects than me. He cited some studies suggesting low-dose radiation may have positive effects, on rats anyway. To which I responded that I’d be inclined to think about the problem differently. First, ionizing radiation introduces double strand breaks on DNA. Those are either repaired properly (with incredible repair proteins). Or they are improperly fixed which can introduce issues, say in the case that a gene was hit directly. Either way it’s a bad thing, and to think the body gets better at it by increased exposure seems unlikely and certainly like it would require some convincing data. Second, it might make sense to study sun worshipers, astronauts, Nuclear plant workers, etc to test the claim in real-life – I don’t think you’ll find it’s a good thing. Anyway we’re not talking about low-dose exposure here. Spying the geiger counter in the corner I wanted to see just how much radiation I was getting with the radioactive tracer. He let me check – results in the pic above.

The basic way this test works is you fast overnight. As the body is starved for glucose (apparently) the active/cancer cells preferentially uptake the injection which consists of glucose and radioactive tracer (it’s actually F-18 fluorodeoxyglucose, which from a metabolic standpoint acts like glucose). You wait in a dark room for 45 minutes while the cells do their work. The idea is to keep as many non-cancer cells from firing as possible. Then they put you in a large tube for 15 minutes that images the radioactivity in the body. The concern with caffeine or other activity like walking is that you could get false-positive results because other firing cell types might uptake the glucose. In case you’re curious the PET/CT carries about a third of the radiation of a full CT scan. A full CT is on the order of hundreds of times that of a routine chest x-ray (about 600 from conversations I’ve had). For reference a dental X-ray, or TSA scan is not even on the same scale.

Perspective

I’ve been having this recurring dream and it’s always variations on the same theme. I’m in Hawaii or some watery part of the world. I’m surrounded by the giant waves. I surf them or I swim in them. And sometimes I prefer to stand on some exposed piece of rock as I’m scared of them because a) they are big, b) there are pterodactyl-like monsters in them with triangular teeth like a 5 year old might draw on a dinosaur. The dream is both exhilarating and scary. Why? Because I’m a great swimmer, I have a surfboard and I do know how to surf. But I’ve only mastered smaller waves. These waves are building size, huge. And they are inconsistent – coming this way one minute and from another direction the next. The landscape is always shifting and evolving. There is no clear orientation (e.g., my house is here, west is that way). All is flux. There is nothing stable except my ability to navigate the waves. And that really seems about right. Taking it one wave, one problem at a time.

This week I’ve seen the full cycle of things. It’s felt like months crammed into 4 days. I’ve got my own cancer front and center in my mind. I said goodbye to my 92 year old grandmother and experienced death up close for the first time. The next day I was snuggling with my 1, 4, 6 year old kids.

My circle of concerns has shrunk considerably. There is just so much less that I care about – my tolerance for drama, B.S. and the generally unimportant was low before but it’s now virtually gone. And I care so much about those things that are within my circle on concern. All of these things are imperfect works in progress, and constantly presenting problems to solve. If you think one day there will be life without problems, or you don’t enjoy solving those problems then, well, you’re in for a hard time. We get to roughly choose the space of problems we can handle: if you’re going to complain about winter then don’t live in New England or figure out a way to make it work; if you don’t like changing diapers, then don’t have babies or figure out a way to make it work, etc. Other problems are handed to us as the price of doing business (cancer). But the alternative is no problems, which is less fun, because you’re probably dead. So embrace life, one problem, at a time. It’s all a gift. It sounds trite but it’s so fragile and precious – and it can all go away quickly.

So, on with it. Test results will be in by this Friday.

Grandma 1 (Photo from by Brother Eli)
Grandma – always so well put together. Sitting outside her apartment in R.I. (Photo from by Brother Eli)

 

Round 6, day 8

This round has been brutal. The body and brain are not on the same page: brain wants to GO, body needs to rest. Body is winning. I can feel the cumulative effects of repeatedly poisoning myself. With a few exceptions I’ve been living life within a several foot radius of my bed though I have managed some coffee with friends, ‘workouts’ (moving my legs on a bike) and Hanukkah activities. I’m getting better about not adding a layer of psychological torment on top to make me feel bad about it. But I’m definitely not there yet. Lots of resting.

I’ve got what I’m calling PTS (phantom tape smell). Everything smells like sterilized medical equipment/medical tape though none is nearby and it is nauseating. At night I wake up basically every hour feeling totally dehydrated though my urine is clear colored. Not sure if this is this some mucosal issue or something else? My tongue feels like a dried out slug in a cave looking for moisture. So I get up and hit the bathroom to grab a sip of water. I stumble to the door in a mix of fatigue and severe aches. When I finish I grab some toilet paper. I blow my nose hard, one nostril at a time for maximum pressure. I examine the output on the white tissue canvas – Jackson Pollock!; red smears of dried blood mixed with yellow mucus (satisfying). I’ve done some variant of this routine for the past week, roughly 5 times a night. Feels like I’m broken.

Other ailments: my intestines feel like they are writhing at night, not really pain so much as discomfort (the drugs working on cancer? something else?) and I end up putting pressure by hand to relieve it; my calves and forearms cramp several times a day (again though I’m not dehydrated); the neuropathy is more severe than previous rounds – if I had to guess I’d say I have roughly 50% feeling in my fingertips; my neck and traps have also started sometimes seizing up on me as if somebody whacked me with a bat across the shoulders – makes breathing hard; everything tastes bad and bland – carbs seem to now have a filmy layer of slime that’s repulsive. No pasta! Generally speaking I’m moving at half speed these days.

Today I finished the last of the zarxio injections! At least that’s done. Time to dispense with my full sharps container.

Hard not to get anxious about these upcoming scans but I think I’m doing as well as possible to not think too much about it – not in my control. Looking forward to getting stronger from here.

Time to empty my sharps container. That’s a lot of injections!
Lev: Daddy are you going to be strong now that you’re done with your shots?
Lua encourages me after my last shot.

 

Round 6 is done

It’s done.

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.

Thanks for joining Matt. Was really special to spend the final round 6 with you.
Certificate of completion signed by all the nurses. 

 

Round 6 this morning

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.

 

 

The art of pausing

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.