My Big “Summer Vacation”

As a kid, I had the summer off from school. There were, of course, many things to do during the summer, and I always had some kind of adventure. The question most asked on my first day back in school was “What did you do during the summer break?”

Well, the summer of 2016 was pretty remarkable. The day before SFCM graduation, May 19th, I had a minor surgical procedure to investigate and treat some red spots in my bladder. They had been there for a couple of months, but didn’t seem to be a problem. A day or so later, we knew these were not just innocent red spots, but were accompanied by a rare invasive and aggressive bladder cancer.

It’s About Time

We sometimes think of time as a commodity, speaking of it as if it were something concrete. “We’re spending all our time together.” “You could invest some time in learning Spanish.” “You’re killing time playing games.” “Don’t waste my time.”

When you get a cancer diagnosis, the sense of time as a commodity can weigh on you. What if I only have a few months left? What would I want to do with this time? Yeah, sure I’ve always been conscious of limited time, but on this day it became way more important. I did decide to stay focused on things I thought would outlast my body, and yet still found time to watch a couple of funny movies. I was able to create a few karmic eddies during the treatment process.

Creative Work Continues

Immediately following the diagnosis I  started composing a suite for string orchestra. You can listen to the work-in-progress on SoundCloud, or in the player below while you read this long article.  I also improved some pieces that I had written last year. Listening to some parts of this new suite moved me to tears repeatedly. Writing and listening were both hugely cathartic. And it reminds me that although composition is an intensely intellectual activity, I frequently cannot identify the origin or inspiration of the music I write. It just seems to happen. (Though it needs a lot of work to bring it along.)

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Support Networks

Dealing with bladder cancer, and especially a meanie type like the one I got, has been a trip. My personal support network is the best, and includes wife (Kathryn) and sons, and extended family, and health care professionals, and friends I’ve known many years. Everyone was “there for me.” Would I even be able to come through for them if the tables were turned?

Kathryn was able to find a lot of information, and many people who are either on the cancer journey now, or are cancer survivors at the BCAN network. There’s also a BCAN online forum at inspire.com and you could spend days there reading stories, so if you want to explore it, do it later on. Forum participants range from newcomers to extremely knowledgeable, and are immensely articulate and supportive.

The Team

My urologist here in San Francisco not only spotted this subtle cancer in the bladder, but he had an email acquaintance with the head of the urological oncology department at Stanford, and she agreed to see me right away. The wonders of quick email turnaround. The pathologist’s report cited some features in the cancer cells that were rare, and my urologist knew that my case should be handled by someone who specializes in these rare cases and knows the procedures that will mitigate the problems. It took some time to get that first appointment at Stanford. (“If you have any cancellations, let me know, I’ll come in at any time.”) Keep in mind that I’m self employed which means that for the most part I control my own schedule. So I can make myself available almost any time. It still required effort to get those appointments set up.

Mind Training; Mind Taming

Waiting is the mind killer. Tibetan Buddhist teachers sometimes refer to monkey mind—letting the mind run on in endless chatter. If you let your mind get going on calculating a prognosis, or figuring out the many possibilities, you can get sucked into worry and obsession. I did not. My mind training is moderate, having practiced Transcendental Meditation back in the 1970s, and having done a lot of silent meditation in Quaker meetings. For the last 13 years I’ve been exposed to Tibetan Buddhist mind training practices, and I’ve absorbed a lot of the silent practices—though none of the mantra-based or chanting practices—and everything was useful. Day after day, hour after hour, minute upon minute, I’d find myself clearing my mind and relaxing into non-judgmental, mind-clearing meditation. It may even be a natural tendency for me, and it was indeed my constant practice during those several months.

From Diagnosis to First Treatment

I will refer to the San Francisco May 19th procedure as the TURBT. It is a trans-urethral procedure using a fiberoptic scope and tools to biopsy the bladder walls. In my case, my doc, Dr. Stuart Rosenberg knew there were two patches of cancer in the bladder (carcinoma in situ), and while he was in there with the scope, he investigated a third, very small, red patch which turned out to be the more threatening and very rare cancer. If he had not had the experience to spot this, my outcomes would have been far different.

Following diagnosis, the first task is to plan a course of treatment, and in my case select a surgeon. In my case this was Dr. Eila Skinner of Stanford, who explained to me the several options in terms of dealing with so much cancer in a bladder. There were options, but all involved completely removing the bladder. It was just too messed up to salvage, and the aggressive cancer was going to spread if given a chance. So I was booked for radical cystectomy with neobladder, in which the urinary bladder is removed and a section of intestine is repurposed to serve as a small bladder, replacing the cancerous organ.

Then more waiting, to get an appointment with the oncologist, Dr. Sandya Srinivas, who would discuss and help choose the chemo (or other) therapies that might be used before or after the surgery.

Many Steps, Lots of Waiting

The planning meeting with my oncologist was a most memorable hour for me. Dr. Srinivas came into the examining room with the pathology reports from the TURBT biopsy. Completely professional, she clearly was concerned about what she was seeing. This is something they see at Stanford only a few times a year. And a particularly difficult type of cancer. The treatment options were unclear because they didn’t have enough real data to know what was most likely to work. (Reading about my condition online, people say “this is the one you don’t want to get.”) Dr. Skinner joined us in the room, and they discussed the options. At this point I had not really appreciated the rarity of this cancer variant, so although I was tracking the options as they were discussed, I didn’t know that the lack of data was so profound that intuition and personal experience, not data, would play a central role in the decisions. If you’re ever in a situation like this, having world-class experts is so critical! I could see the mental wheels turning, the quick parlay back and forth between the experts, leading to the suggestion that I get two rounds of aggressive chemotherapy followed by surgery. But even then, there was the possibility of going directly to surgery rather than spending time on chemo, which had not been shown to be directly effective at stopping this type of cancer. Amazing how much the decision seemed to also rest with me, not just with the experts. And there we have it again—the idea of “spending time” on one therapy or another, with the aggressive cancer possibly blazing away devouring my bladder and possibly other parts of my body while we pursue a useless therapy. Best practices imposed a limit of about 90 days between discovery and surgery, and anything more could be dangerous.

I said “I want to be aggressive in treating this disease.” So the team chose to put me into two 14-day rounds of dose-dense MVAC chemotherapy. This was to be administered at the new UCSF Cancer Center in San Francisco by oncologist Dr. Terry Friedlander, to reduce my travel time, which could be important if I suffered nasty side-effects from the chemo. Two rounds is relatively few for chemo, and in fact it’s kind of a compromise between two views, one of which would rush to surgery immediately, and the other of which would complete more rounds of chemo to try to reduce the chance of metastatic disease. The middle road, two rounds, was chosen because my type of cancer just didn’t provide enough data points for the team to know what would work best.

Chemotherapy

The ddMVAC chemo includes a platinum compound, which can cause hearing loss or tinnitus as a side-effect. As a (new) composer, I was concerned about hearing loss. (I already have considerable high-frequency loss.) So I considered a PD-L1 immunotherapy trial, which was in place at UCSF, which doesn’t have this potential side effect. However, the response rate to immunotherapy is only between 20% and 40% of participants, which I thought was low. So I avoided the immuno trial in favor of the chemo, which I thought had a better chance of working. Turns out that this cancer’s response to chemo is probably low, perhaps even lower than 20% but I didn’t know that. In fact, there is so little data on this specific cancer that nobody really claimed to know. (Ultimately I do feel there were signs that the chemotherapy did work in my case, so this was the right choice for me.)

Chemo therapy began. Somewhat apprehensive because of all of the potential side-effects, but also upbeat because I wanted to get down to business and start trying to kill the cancer cells. Impatience. Waiting. Meditating. Waiting. Wondering if chemo was doing anything.

A round of chemo consisted of a short day during which two hours were spent infusing chemicals, then a second day of about six hours of infusion, and an injection of growth factor on the third day. Then wait out an additional 11 days for a total of 14. For the first few days there weren’t even any odd feelings. Then about day 5 some fatigue and a little nausea. Food was OK. No significant weight loss. Had to stay away from folks with colds during the second week because of suppressed immune system. In the second identical cycle I experienced more nausea, though the active side-effect itself was confined to one day. I must say that I was so jazzed to be taking action against the cancer that even the most potent side-effects still would have had an uphill fight. 90% of my hair fell out near the end of the second cycle. That was trippy, in terms of seeing myself as a different person. A cool baseball cap helped me conquer this and keep my head warm. Now I know why my shaved-head friends all wear caps!

Following the second round of chemo, there was a CT scan to determine the status of the cancer. It pretty much indicated “no change.” Now that’s actually not bad! The thing we feared was that the cancer would continue advancing even with those chemicals in my bloodstream. It apparently did not.

The journey was a real rollercoaster ride. Initially, I thought there was only a small chance I had carcinoma in situ, which can be treated right in place. Then after the TURBT it was clear I had something worse, that might require major surgery. Then waiting for appointments. Then chemotherapy, during which I felt pretty good and frequently wondered why I was doing that rather than rush to surgery. Then waiting after the chemo. Then the surgery and five-day hospital stay. At that point I still felt like there had been nothing wrong with me. Then the pathologist’s report showed serious cancer, and that it had been successfully removed. And now three weeks after surgery, learning to urinate from my new neobladder and honestly feeling pretty well.

The Non-Medical Side

What about imaging and prayer and healing practices? Well, I did a fair amount of what I would call imaging work, where I entered a meditative state (calm mind), but bringing to mind an image of holding the cancer cells cradled in my abdomen so they could not escape to the rest of my body. Did this actively a few times a day. All around the world there were folks praying for me and holding me in their thoughts. Whenever I sit silently and with a spacious mind, I can feel this broad community of people holding me up. I did also have three conversations that were in the category of angelic healing, which I felt were instrumental in helping me open my awareness to aspects of my way of being in the world. These opened to me several new thoughts. One of these is that as an adopted child, I didn’t feel “held” and loved by adults in my early years. I can imagine what it’s like to have this warm feeling of safety, but honestly searching my awareness I couldn’t find it in my own memory. Understanding this helped me become more accepting of help and concern.

On the Bus

From the time of the diagnosis, I formed an image of this cancer “traveling the road” with me for a while, but I knew I’d try to ditch it as soon as I could. Perhaps it had gotten on my bus with me, and started up a conversation, but I felt no obligation to continue hosting it. As if I were saying “Nice to meet you, and I hope I learn some lessons, but you’re getting off the next time this bus stops for passengers.” I continued to treat it this way throughout my experience. Understanding that I didn’t have to be permanent host—that it didn’t have to stay on my bus—was critical.

Between Chemo and Surgery

Waiting for surgery is tough for many people. Overall I had a couple of months to prepare, and surgery didn’t really become a checkmark on the calendar until the second round of chemo was completed, at which point the only thing I had in front of me was surgery, so there we go. At that point the waiting game began again for three weeks. Silent meditation. Relaxation tapes. Clearing the mind. The central principle continued to be “not to worry.” Howard Rheingold (who also runs a cancer blog based on his own experience) says, “Don’t pre-worry things.” There’s a waiting period following chemo before you can get into surgery — to let the body recover, because the chemotherapy is designed to disrupt fast-multiplying cells (cancers), but it also disrupts a lot of normal body functions (hair growth, digestion, taste, maybe hearing). So you have to wait for these systems to recover before you go into surgery—because surgery is going to tax your body greatly. I focused on my bus imagery quite a bit during this time. I also felt that the chemo had put down the cancer, which made me optimistic about surgery.

After Radical Cystectomy (Surgery)

Comin’ out of the operating room. What an interesting experience in the recovery room. Like a movie with unexpected cuts. Someone would stand at the foot of the bed asking me a question, which I’d answer and in an instant there would be a “cut” and they’d be up by my head. Anesthesia playing tricks on perception and memory. I enjoyed this period and how it played with my perceptions.

This reminds me that following my TURBT (in May) I had 24 hours under observation in the hospital, during which I slept not a moment. My perception in the recovery room that time was similar—there were “cuts” in consciousness and dropouts of memory. The sleeplessness continued for me for more than two days in that case. It permitted me many hours of silent meditative practice.
I’m writing this at S+20 (surgery plus 20 days). Drain plugs and tubes were removed last week, and the catheter was removed today. I’ve been quite surprised at how little pain there is associated with the surgery itself. I had lots of gas and bowel pain initially as the gut restarted the digestive process, but no pain I could associate with the removal of the bladder. Neobladder as a procedure takes a portion of the intestine and repurposes it as a container, feeding urine into one end and draining it from the other end to exit the body “normally” through the urethra. The surgical incision was glued, not sutured or stapled. There was a drain tube for 14 days. A catheter remains for three weeks. (Um, really only read this if you can handle it… Gore and surgical details. )

The pathologists’s report was all good. The cancer had not spread beyond the muscle of the bladder. None of the lymph nodes stripped during the surgery (59 of them) had any cancer. The cancerous lesion was only half a cm in size, which is smaller than CT scans had been leading us to think. These are the best possible outcomes after this surgery. It seems to me the chemo and other treatment worked. The surgery was successful.

My surgeon came into the examining room this morning saying “How’s my star patient?” What a laugh, and I loved it. She told me that I’ll have follow up visits, and a CT scan periodically, and that cancer could return, but for the time being there is no evidence of disease.

Having gone through all of this, I have experienced and learned a lot. I now have a neobladder, and starting this week I am training it to handle a normal load. There’s no easy user manual in six languages. These are one of a kind. Though the surgery was successful, and the pathologist’s report would suggest no cancer remains, there still could be a recurrence in the future, so it’ll require constant watching. A new chapter begins.

[Read more about the cancer journey]