Friday, May 18, 2012

Countdown to Surgery

It has been almost 11 weeks since I first wrote about my bladder cancer diagnosis and planned treatment.  For most of that time, while I knew that 'surgery' would follow my chemotherapy, the focus has been on the chemotherapy, then a window of time to try to regain some strength/stamina and, the future.  Before getting to the surgery, the looming hills were navigating my way through four rounds of an aggressive regime of chemo therapy.  The surgery that would inevitably follow was in the distant horizon. Even after the fourth, and final, round of chemo, I was focused on working to recover some of my strength -- definitely aware of the upcoming surgery, but not looking too closely at that horizon.  Now, these past few days, it is suddenly racing closer!
The next hill to navigate (okay, maybe a mountain?), is the surgery.  It is scheduled for this coming Tuesday, May 22nd.  Just days away - it suddenly looms large!  Various parts of surgical preparation start tomorrow.   It is those 'chemo hills' that are suddenly fading, as this one fills the horizon.  It is definitely no longer just an 'intellectual' exercise, something that I'll 'deal with' when the time comes.  Now, the time is here, there are some real decisions to consider.  It is a bit scary.  Maybe more than a bit.

Some have asked about details of the surgery, as I've mostly just referred to it as "the surgery".  Feel free to skip the bullets below if you don't want to read about these details.  The details, and what I've meant by 'complications', are:
  • the core of the surgery is called an "open radical cystectomy".   In terms for the rest of us, the surgeon removes my bladder and some surrounding tissue and lymph nodes, and replaces the bladder with some other option.  At least in this case, it is "open" surgery, which means that there is a large open incision as opposed to laproscopic or robotic assisted surgery.  There are trade-offs between "open" and robotic-assisted surgery.  For my situation, I preferred the open approach.  
  • part II of the surgery is the "replace it with some other option".  Unless I express a preference otherwise (the "some real decisions" I mentioned above), this decision will be made by the surgeon during the surgery, once they can closely examine my internal condition.  The choices are an internal "neo-bladder" or an external "ileal loop urostomy".  I just call them internal and external.   As you might imagine, creating the internal bladder is complex.  On the other hand, if it goes well and subsequently works well, it is much nicer than having something external to deal with.  Unfortunately, even in ideal circumstances, neo-bladders often (20+% of the time) don't work well or they require a lot of care and maintenance, which can be difficult.  The external bladder is the more proven approach.  While it requires maintenance, it is pretty easy to care for and complications are much less frequent than with the internal.  But, it is an attachment to my body and something that I would have to deal with for the rest of my life.   That is the tradeoff -- external, with knowledge that it will always require some level of basic care, v. internal, with the likelihood that, after an adjustment, it requires very little care but, the 20% chance that it turns out to have significant complications or require lots of care/maintenance.  Incidentally, both the neo-bladder and the piping for the ileal loop are created from a segment of the small intestines.  The surgeon will be very busy on Tuesday!
  • The "complication", which is relatively rare for people with invasive bladder cancer, is that two years ago I had surgery for prostate cancer.  The prostate is (well, in my case, was) adjacent to the bladder.  That surgery will have left behind scar tissue and other issues that make the cystectomy and the creation of a neo-bladder more complicated.  Hence, even if I had a strong preference for the neo-bladder (I don't), the decision would still be made by the surgeon, during the surgery, based on the actual conditions.  That is, it probably isn't a choice, I'll end up with the external solution, an ileal loop.  
So, those are the details of what the surgeon will be focused on next Tuesday.  Except for a few words in pre-op, I'll be a passive participant.  I'm told that the surgery will take about 5 - 6 hours.  Following the surgery, the expectation is that I'll be in the hospital for about a week, including 2 - 3 days in the intensive care unit. 

A few friends have also asked why I went through the chemo-therapy, those first four hills, if the bladder has to go either way.  The short answer is that, while the cancer started in the bladder, and they haven't seen evidence that it spread beyond that, there is a chance that some cancer cells escaped the bladder.  If that turns out to be the case, and those cancer cells survive, it is not a good thing.  Hence, the chemotherapy -- it is a "systemic" treatment, whose real goal is to kill any cancer cells that escaped my bladder.  The surgery will deal with those that stayed behind and, of course, ridding me of the bladder -- where the cancer originated.  How ironic (and frustrating) that, in terms of what it is supposed to do, my bladder survived the prostate cancer surgery two years ago, and works perfectly well!   Still, it is time, as the French say, to bid it adieu.

In the meantime, especially this past week or so, I've made real progress on getting back some strength/stamina.   The first couple weeks of my "recovery period" were full of fits and starts.  While I was mentally alert, focused, and engaged, I had precious little energy.  Even relatively short walks were taxing.  Very frustrating!   Throughout, Josh (my youngest) has come home from school each day and offered to take me to the gym.  After my experience a month or so ago, he knew I was nervous about going on my own.  These week, we went for three consecutive days.  By the third, I actually made it back to an hour on the cross-trainer, and getting back home to talk about it!   I kept the pace and the course relatively moderate, but was able to increase the resistance a little each day.  It is a far cry from my favorite bike rides, but great progress from only a few weeks ago.  It felt great!

As spring has finally arrived, I'm very reminded that this is the time of year when, for the past decade, I've been able to get serious about cycling.  In addition to regular training (we live in a wonderful area for cycling), there are a few big rides that I'd definitely hoped or planned to do again this year -- the Pan-Mass Challenge (my 11th), the Israel Ride (my 7th), and Hazon's California Ride (2nd).  At this point, while I may be able to start cycling again in a few months, any big rides for 2012 are probably out of the question.   Instead, through the thoughtfulness of others, I've learned in the past few weeks that at least I'll still be a part of each of those rides in 2012.  For the Pan-Mass Challenge, two, or maybe three, of my children and maybe some other relatives are planning to ride this year.  For the California ride, my friend and fellow Israel Rider, Yeshaya Ballan did the ride last weekend in my honor.  And, another Israel Rider sent me a note recently to let me know that, if I'm not able to ride the 2012 Israel Ride, they will be there and, in my honor, will be flying an Israeli flag from their CamelBak (as I often do on that ride).  It is truly touching that each of these people have reached out, knowing the importance of these rides to me, and let me know that, in a very real way, I'll still be there this year.   It is that much more motivation for me to focus on being able to do all three of them on my own, in the company of friends and family, in 2013!

I was reminded this week of two conversations that I had a couple of months ago, after my diagnosis, but before the start of my treatment.  One was with my Rabbi, and the other was with my Oncologist.  Two pretty important people in my life!  And, while I am paraphrasing, at one point they each made a very similar comment, "this is the fight of your life".  At the time, I definitely appreciated that neither said I was fighting "FOR my life", just that it was the fight OF my life.  Still, I didn't fully appreciate the perspective that they brought to their words.  It is the fight of my life, and I have had the good fortune of being accompanied each step of the way by amazing family, friends, colleagues, and clients!   The first four hills are behind us, the next one looms ahead.  Then, whatever is ahead, I know I won't be alone.  Thank you!

Shabbat Shalom.


suekagancarson said...

sending love... lots and lots of it to keep you warm.....

Olga said...

David, we are going to root for you tomorrow - all people at the cureasps society forever grateful to you for the great effort you put into the cure asps cycling fundraiser.