Tuesday, May 22, 2012

Post-surgery Update

The surgery today went as planned and David is recovering well. We were originally told he would be in the ICU for a few days but he's doing so well that that's not necessary. He's being moved into a private room until he is well enough to come home. More updates coming in the next few days.

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.

Tuesday, May 1, 2012

MRI's, the Bookends to my Chemo

My first MRI at the Dana Farber Cancer Institute (DFCI) was about nine weeks ago.  It was part of a whirlwind of activity that started when an astute doctor in the office of my now former specialist became aware of the results of my latest biopsy.  He contacted DFCI directly, and got the wheels in motion.  They responded quickly.  A short time later, I found myself in the office of an oncologist at Farber.  That was followed by the MRI, a battery of other tests, discussions about my choices for chemotherapy, an independent consult with a radiation oncologist, an eye-opening (in all the wrong ways) meeting with my now former specialist, decisions, and, on March 6th, the beginning of my first round of chemotherapy.  As I said, a whirlwind of activity.

The first MRI was an eye opener.  I was in the machine for 50 minutes.  The following morning, for my consult with the radiation oncologist, there were pictures.  In a way, it reminds me of the first time I saw an ultrasound -- it all seemed to be static at first but, slowly, the image came into focus.  As parents, the image of our unborn child was breathtaking, a moment of joy.  In this case, the oncologist showed us the image of my bladder.  At first, to me, it was nondescript.    It took a bit to  focus in, notice the shadows, and the disruptions on the inside of the bladder, and to realize that I was looking at the cancer and, inside my bladder, it seemed to be everywhere.  It was breathtaking, but not a moment of joy.  I started chemo less than a week later.

That was eight weeks ago.  It's been two weeks since the start of the fourth, and final, round of chemo.  As I'd learned to expect, the fourth round hit hardest.  By last Wednesday, I thought I had bottomed.  I was finally seeing/feeling "daylight", and some energy.  I thought that this part of my treatment was done!   Unfortunately, I went down hill on Thursday night.  I'd been short of breath for weeks, a symptom of being anemic.  By Friday morning, when I had an appointment for my "post chemo" MRI, walking even a few feet was a struggle.  I wanted to resist, but Fran was right to insist that I let her put me in a wheelchair for the walk to the MRI suite.  

From the MRI, she wheeled me to my oncologists office and they squeezed me into the morning schedule.  Blood labs quickly confirmed that I was severely (my words, not theirs) anemic.  My oncologist arranged for a transfusion, Friday afternoon, of two units of blood.   It has been all uphill from there -- my breathing today is better than it has been in weeks, as are my energy levels.    

With that, the "chemo chapter" of my treatment is over!  I now have three weeks in what I've been thinking about as the eye of the hurricane -- the chemo wall of the storm has passed, and I have this time to get stronger and prepare for the next part of treatment, my surgery.

In the meantime, what of that second bookend, the updated MRI?   While I haven't seen the pictures yet, the oncologist called us at home on Friday evening.  He wanted to check on how I was responding to the transfusions and to share the initial analysis of the MRI.  

Ultimately, my understanding is that the goal of my chemotherapy is something that we can't see -- it is to destroy any cancer cells, though still only microscopic, that may have already escaped the site of my cancer (the bladder).   Success at that goal, unfortunately, can't be confirmed with an MRI.  But, the MRI report was good -- still no measurable indications that the cancer has spread beyond the bladder, the walls of my bladder are in much better (i.e. smoother) condition than they were eight weeks ago, and the visible cancer in my bladder has been substantially reduced.  All things considered, it was a good a report as I could have hoped for!   And, well worth the price paid over the past eight weeks.

On a final note, it has also been about eight weeks since I wrote about crossing the PMC (Pan Mass Challenge) Bridge, the connector between the Yawkee Building at Dana Farber, where I am being treated, and the Dana Building, which houses the MRI suite.  I wrote at the time that, though I've pedaled well over 1,000 miles on the PMC bike ride, none were as difficult for me as that short walk over the PMC Bridge.   Little did I appreciate that my next journey over that short bridge, eight weeks later, would be in a wheelchair.   I look forward to walking over that bridge again and, ever more, to cycling again in a future PMC.