Leaving Kauai; pattern interrupt; the scan

Back in SF!

So was 10 days in Hawaii relaxing?
Kind of. If you think it was sleeping in and pina coladas on the beach all day you’ve got the wrong idea. We definitely had lots of quality downtime with the kids, which really was the main point. Still, 10 days with 3 kids and no babysitter or school does not produce a beautiful tan (the chemo is likely still lingering in my body so I was vigilant about limiting my photon exposure anyway… I was the guy with long pants and running jacket on most of the time). But it was a necessary pattern interruption on the ‘big C’ and we did it the right way – no regrets. I think the kids really enjoyed themselves. I know I did.

PET/CT scan

It’s done. I had the scan yesterday afternoon. I expedited the schedule by a few weeks to coincide with my return. The outcome will determine whether I’m headed back to treatment right away or not. I’ll find out results today or tomorrow.

If the tumor is not progressing that will be a strong signal that indeed we’re looking at Follicular lymphoma and that (I think) it’s somewhat stabilized. It’s a bit odd to think that’s what I’m hoping for, but given a choice I’ll take an immediate future of ‘watching and waiting’ over some of the treatments I’ve lately been contemplating. Regardless I’ll circle back with my panel of docs to ensure alignment, especially if the scans are anything but super clean.

When I arrived I pushed for an answer as to why this time we were doing a ‘whole body’ scan (as the order indicated) versus what I had last time which was ‘eyes to thighs’. It’s not a big difference from a radiation exposure standpoint but more a question of principal. Why the difference? Anyway I was able to get a hold of the oncology nurse before going in. Her explanation was that because I’m now post-treatment they order whole-body. Good enough – at least it wasn’t an oversight.

While pushing back for an answer I got to talking with the tech that was running the equipment. I was asking more details about radiation exposure. The last tech I spoke with indicated the radiation exposure from a PET wasn’t especially high. When I mentioned this the tech laughed that this was ridiculous. So I asked if he had any way of putting these various scan types all together as I haven’t seen a clean comparison across all procedure modalities? He did a few minutes of searching and showed me exactly what I wanted to see in a handwritten table on his phone. I copied the values and cross-checked them. Here’s a table breaking it down. I normalized against some common benchmarks: the number of dental x-rays, flights across the US to put it in perspective. You can see the top row shows PET/CT as the equivalent of living 8 years in the US, taking 5k dental x-rays, or 800+ flights across the country.

For those interested in radiation exposure for various medical procedures this table shows the equivalent amount of background radiation a person would get living in the US (not at altitude which adds 1.5 mSv/yr) by procedure type. The last 2 blue columns normalize procedures to other contexts.

As we got talking further I was horrified about a story he told me. To summarize there was a PET/CT center in southern California in which the amount of isotope injected into patients was consistently 30% too high – and this happened for several years. Concerning as the radiation exposure would be, the real issue was that tumors might show as more active than they were, which could be interpreted as showing more progression than actually existed! Sometimes you just don’t want to know how the sausage is made.

With that he left. I sat in dark silence for an hour as the radioactive isotopes penetrated my cells.

How do I feel?

Truth is I’m less worked up about it than I would have thought – despite that I can almost already hear my oncologist on the phone delivering yet more bad news. And I’ve still been having nightmares – different forms each night since before leaving for Hawaii. I won’t bother going into details but to say that in some I emerge victorious, others end inconclusively. These are clearly the subconscious processing of a mind grappling with high uncertainty.

Still, for some reason I’ve been feeling optimistic about things lately – regardless how the scan goes. Not sure I’d call it faith but I certainly don’t feel like a helpless victim. I believe that focusing within my circle of competence has been helping allay many of these fears/anxieties (sketch). I’m getting better at explicitly identifying where energy expenditures are helpful vs. useless.

Re-patterning 

One goal of mine is to break in new patterns of being and commit them to habit. I’ve started to think about my immune system as a child I need to care for (and what’s one more kid at this point!). I’m trying to be intentional about coddling it because it’s fragile and I’ve perhaps been unkind to it. Hawaii was the tip of the spear on this path.

If anxiety has a negative effect on immunity – and I think there’s sufficient quantitative/qualitative data suggesting this is so – then it’s worth asking the question of what causes anxiety. When I put this question to myself it was clear that thoughts cause stress. That seems so obvious when in black and white; it’s not the event itself but the thoughts surrounding it that cause stress. Thomas Jefferson said almost 200 years ago:

How much pain have cost us the evils which have never happened?

So which thoughts specifically? For me it’s future-oriented thoughts, e.g., What might happen, will the scan be good or bad, how bad is this diagnosis? etc. Anxiety for me is about getting caught up in scenarios, “what if’s” and ‘should’s‘. I have this tendency to observe scenes in the third person, objectively as a bystander. If nothing else it’s a pleasure blocker. So what’s the solution?

Be present. Here. Now!

To be present is to circuit-break anxiety. I don’t think that being truly present can co-exist with anxiety, in the same way that you can’t simultaneously hold multiple conversations at once. If I’m grounded in the here and now then none of that matters. When I feel the sinking feeling of waiting for this test I try to bring it back to the present moment. I’ve heard this so many times, to focus on the breath etc., but only on this trip did it actually sink into my bones.

There was a moment on the last day. I decided to get out of the house before anyone was up while still dark. I went for a jog beneath a crescent moon peaking out from behind silver pre-dawn clouds. I was running alongside the ocean along Kauai’s perimeter, an ant edging a jar lid. I stopped and looked out, taking in the magnificence. Truly paradise. I looked out over the black rocks with the type of deep stare I get when totally immersed in a thing. I would do it as a kid all the time. When your eyes find a focal point it becomes clear how energetically expensive eye saccades are. The focus was slow, deep and constant. I stared for a long time and felt one with the scenery; nature looking on herself. I was simply the observer to that exchange. Peripheral events didn’t matter – a truck in the distance, morning roosters, etc. Another word to describe it: absorption. Nothing really happened in that time but to say it was obvious this is an optimal state of being and one worth actively cultivating.

That kind of awareness is like focusing the sun’s rays to a single point to light a fire. In this way being present seeds a positive feedback loop that leads to seeing -> to knowing -> to loving -> to calmness; and back again to being present. It’s taken me this many years to really get it. I’m still working on doing this more and infusing it into my daily life to the highest degree. I see cultivating an ability to turn it on like a switch as a worthy, life changing challenge. It’s been really interesting to play with this, like a new brain gear.

One good gut-check I’ve been doing each day to find out if I’m actually present is with washing the dishes (or whatever chores). When I’m present it’s meditative. My future-oriented/anxious/distracted self tends to dislike chores like the dishes because (I think) I should be doing so many better things. But not really. The best thing to be doing, is the thing right in front of you. Right now. Fully and with love.

Not trying to be a Jewish 80’s rapper so much as protect myself from the sun. With Michelle – I think this is one of the only pictures with both of us together.
Lua at the pool!
Same activities, different location.