Transitions II, with the wind at my back...

It has been over seven months since I wrote my first blog post, Transitions, about bladder cancer. At the time, other than aggressive treatment, I didn't know what the future held. I also didn't know what it would be like to write about cancer, to share my experience with others. As you'll recall, I wrote that I was much more comfortable writing about the excitement and joy that I get from something like the Israel Ride. Cancer  is scary. 

Still, I wanted to try to share the journey. I did that for myself.  I thought keeping a chronicle might help and that it could be a useful way to keep my friends and extended family informed, without phones and sometimes difficult conversations for me or my immediate family. I'm tremendously glad that I made that decision. It lead to an outpouring of support, prayer, love, and good wishes from generations of friends, and some strangers too. Each of you has been with me these past months, helping me through each stage of the process, giving me strength. You've truly been the 'wind at my back'. I've been very fortunate. 

I've written that I thought of this time as having three phases -- chemotherapy, surgery, and, hopefully, recovery. I was excited to get to the third phase, recovery - that put 'things' back in my hands, the work of the doctors was largely done! I was blessed that the chemo and surgery were so successful that I could approach recovery "cancer free". At the beginning, that was not a foregone conclusion. All we really knew then was that the cancer was very advanced, 'pervasive' throughout my bladder, but, hopefully, still contained within my bladder. We also knew that I would probably be bladder free after the surgery, not necessarily cancer free. It is still difficult to write or believe that I am cancer free. I suspect that comfort only comes with the passage of time, lots of time. Cancer casts a long shadow. 

I have not written a lot on this blog about "recovery". Not that there wasn't a lot to write about, but it was something that lent itself better to short posts and updates on Facebook. That is good -- it is because the recovery went well, I made consistent progress, and had no major setbacks. There have been challenges, but not the meta-challenges that I struggled with after the initial diagnosis, chemo, and surgery. By comparison, the challenges were mundane. I stabilized and, with the help of others, began the work of getting my strength and energy back. I had a long way to go. I was in a wheelchair just weeks before surgery, and my first post-op accomplishments were measured in feet walked (or body functions regained, but we won't go there!). For weeks, things as basic as taking a shower were exhausting. I had twice weekly visits from home health. While helpful, they were so tiring that I did not even try to get any other exercise on those days. But, progress was steady. With the help of friends and family, I was regularly walking our block, about a mile, within a few weeks. By seven weeks, I was walking 6 - 10 miles/day. At eight weeks, July 17, I finally was able to get back on my bike for a short, chaperoned, ride. And, the first Sunday in August, I was able to ride 50 miles on the "family" route of the 2012 Pan Mass Challenge. I made good progress! Throughout, the prayers, love, encouragement, and support of family and friends has been a constant source of strength. You've truly been the wind at my back! 

The past month or two has been part of a new phase, one that I originally thought of as part of "recovery", but it is very different. I'll call it reentry. It is not about getting my strength and energy back, but of getting comfortable and finding my place back in the community and at work. It is about returning to "normalcy", or new-normalcy. It started slowly, as groups or crowds were overwhelming. Among friends, large groups were too emotional for me to deal with, not among friends, large groups were just scary.  Fortunately for me, some friends just knew this, and they invited me to small gatherings, easier to participate in. Others shared conversations, then walks, and then bike rides (yea!) with me, helping me not just recover my strength but also start to get more comfortable with myself again. 

I'm not sure that things will ever be back to "normal" -- at best cancer leaves a long shadow, and life without a bladder has it's moments as well, but we've made good progress on reentry. In the community, it was a long way from only being able to deal with people one or two at a time, to being able to again be more active at our Temple and with JNF, and to helping lead our Temple's Israel Appeal this year. Finding and keeping my voice in front of about a thousand people was a major milestone for me. It was only possible for the steps that came before it. Similarly, I've taken on a new position of responsibility for the Israel Ride, as vice chair of the ride, and I've resumed my full time responsibilities at work. This isn't recovery, it is reentry -- reentering the community, re-'claiming' some of my former responsibilities and joys. 

In a few short weeks, I'll return to the original reason that I started this blog, almost four years ago -- the Israel Ride! After learning my cancer diagnosis, and what the treatment would entail, I didn't expect to do the 2012 Israel Ride. In fact, at points during chemo, it hurt to even think about it. My first kernel of light came when a friend from prior Israel rides said that she would be riding in my honor. That got me focused, as much as her ride would mean to me, finding the strength to do the ride myself would mean even more. A few weeks ago, my doctor said "yes, absolutely" when I asked if I was healthy enough to do the ride. I was in! On November 5th, I will pedal into Eilat on the last day of the Israel Ride.  It will have been five months and two weeks since my surgery, and almost six months since the chemo left me in a wheelchair. I've never been alone. Each of you as been with me, the wind at my back. Thank you!  We will pedal into Eilat together.

I am thankful to have these past months behind me.  I pray for my friends and relatives who are currently struggling with cancer.  I've been truly fortunate, I hope and pray that they are as well.

My next post will be from the 2012 Israel Ride!

Remembering my father, Milton Eisenberg

Today is the first Father's Day since my father, Milton Eisenberg, passed away -- about 10 years after he was first diagnosed with cancer.  The dignity of my father's own fight with cancer has been an important example for me over these past months.  


A few years before he died, at the suggestion of his wife, my father took the opportunity to write down some reflections on his life, lessons learned, and his perspective on the miracle of life.  His wife, Su, shared those reflections at the memorial service for my father.   On this Father's Day, and in appreciation for the lessons he shared with us, I've repeated them below...in his own words.

ME Eulogy Notes For Su Kim

Dear family and friends, thank you for being here today.


I asked my husband to help me write his eulogy when I still had reason to hope that his end might be some time away.  I wanted him to look back on his life while his mind was clear and he was in a happy state.  He said this was good thinking, and agreed to put some of his thoughts on paper for me to share with you today.  This is what he wrote:


“Human existence is a puzzle. We are born helpless.  If we have a normal life, we mature into self-sufficient beings with remarkable bodies and minds able to accommodate almost every sort of physical, intellectual, moral and emotional challenge.  As we grow old, we become helpless again and need the same kind of support as when we were children.  Then, inevitably, we die. 

“As intelligent beings, we cannot avoid speculating about what dying means, especially when we are asked to help compose our own eulogy.  The question we ask is the same one that has perplexed mankind for all of its existence:  Is death an annihilation or do we have souls--independent spirits--that live on long after the body has decayed?


“I used to believe that death brought with it the Day of Judgment when God decided who among us would enter Paradise.  I had only the vaguest concept of what Paradise might be like and was keenly aware that modern science contradicted any notion of an eternal disembodied spirit.  Nevertheless, I was convinced that at the end of our lives on earth, a just and demanding God would be obliged to reward virtue and punish evil.  Later, when I learned something about Buddhism’s belief in reincarnation, I began to think that the choice confronting us was not between Heaven and Hell, but between Nirvana and a renewed experience of birth, old age and death. 

            “My belief in a Day of Judgment gave me more concern than comfort since I had reason to doubt at the time that I would be among those fortunate enough to be chosen for Paradise or Nirvana.  I remember thinking that to have any chance of redemption, I would have to do something so noble before I died that even God would notice. I prayed that God would give me a long life so I could make amends for my many shortcomings.


"My concerns changed after I met Su.  I began to focus much more on the mystery and wonder of my life in the here-and-now and less on what would happen to me in the hereinafter.  The miracle of life on Earth became more important to me than speculations about the possibility of an after-life or another life. 
  
“We exist as tiny specks on a planet suspended in the cosmos as part of a vast solar system kept more or less in place by forces we can measure but cannot see.  Most scientists tell us that the world began with a big bang and that our Earth evolved during a multi-billion year process of adaptation into the diverse, intricate, precarious, and extraordinary place we inhabit.  Others believe it began about 6000 years ago and was completed by Almighty God is just 6 days.  Between these extremes are a multitude of beliefs too numerous even to catalogue.


“Whatever the case, I began to focus less on what would happen to me after I die and more on how I came to exist at all.  I realized that the whole idea of human existence was miraculous and that we must all be eternally grateful to whatever or whoever allows us to dwell in this earthly Paradise for whatever span of years we are given.  Personally, I have no hesitation in thanking God for this privilege, whether or not He also has endowed us with immortal souls or unending cycles of life.


“Every life, of course, is unique.  I know that I would not count my life as such a blessing if I didn’t have Su to share these last years with me.  I lived through two failed marriages before I met Su, which may be one of the reasons I appreciated her so much.  I do not blame anyone but myself for what went wrong since, as I confessed to Su many times, it took me a long time to grow up.  My effort to be worthy of her made me a better person.  Su gave me the chance I needed to redeem myself in this world, not the next.


“The Rabbis, and other religious leaders, like to say that God wants us to suffer to ennoble our character.  There may be some truth to this.  We know that Beethoven wrote the Ninth Symphony and other great works when he was totally deaf.  It is hard to imagine a more devastating ailment for a musical genius.  We know that Van Gogh, suffered all his life from depression and maybe that is what we see in much of his art.  It may even have been the spark that made his work unique.


“Personally, I think the Beethovens and Van Goghs are exceptions.  For most people, suffering is embittering, not uplifting.  It saps our strength and our will.  It diverts us from constructive endeavors.  In my own experience, a life that enjoys a share of this world’s blessings is much more likely to be fulfilling than a life tormented by pain. 

“Fortunately, I was blessed with good parents who did their best to spare me from hardship.  They were immigrants from Russia, which they fled to escape the Cossacks and pogroms.  They were hard working and proud to be Americans and did their best to help me make the most of my life in their adopted land.  I was doubly blessed because I also had a stepfather who embraced me as warmly as could have any blood relation.  A parent’s love is precious, but is love based on blood ties and tinged with the vicarious pleasure that comes from the success of one’s offspring.  Maybe that is why I appreciated my stepfather’s love even more than my mother’s or my father’s.  If it is possible, I know he is still caring for my mother and looking out for me.


“My stepfather, despite his own limited education, made sure that I would get a good education at a fine university and law school.  I was a good student and had many wonderful teachers; one in particular named Milton Konvitz who I admired above all.  My education helped me to a successful career.  One of my earliest mentors was Judge John Danaher, a kind and thoughtful man who taught me that accomplishing anything worthwhile required hard work and dedication.  As a federal prosecutor under Leo Rover and Oliver Gasch, I learned that however much we are taught to love the sinner, there are truly evil people among us who must be separated from the mostly good people who inhabit the earth. As Minority Counsel of the House Committee on the Judiciary and then as Administrative Assistant and Counsel to Senator Keating, I had an opportunity to work on the civil rights legislation that did so much to remove the legal barriers to full citizenship for black-Americans.  I worked in the Senate while Barry Goldwater, who commanded my Air Force Reserve Unit, Lyndon Johnson and John Kennedy and Hubert Humphrey and many other well-known figures were serving in that body.  I respected and admired most of them, but this experience taught me that the most popular people are not always the most admirable and that even the most esteemed of our Nation’s leaders are not much different from the rest of us.  Finally, as a trial lawyer with Fried Frank, a large and successful law firm, I learned that because of my education and experience I could hold my own in the company of some of the best lawyers in America.


“It was a very satisfying career and allowed me to live a life beyond any wish I had for myself.  And I know it would not have been possible if my stepfather and my parents had not given me the support and encouragement I needed.   


“After I married Su, I became a stepfather to her children Omar, Princess and Dominique.  I tried to honor the example of my stepfather by embracing them as he had embraced me.  There were difficult times, which only made me appreciate my stepfather even more, but I hope they and my own children know that I wanted the best for them always.  My daughter Beth and my sons Justin, Jon, David, and Seth have given me many wonderful grandchildren.  Su sees my reflection in several of my grandchildren, particularly Brian Patrick, Justin and Michelle’s youngest.  While I don’t know if my soul will live on, I have no doubt that some of my genes will survive in them and I pray that it will be only the good ones. 


“All our children are good human beings, the highest praise I can give them.  The advice I give them is to treasure every day of your existence and to do your best at every task you face.  I do not believe in living life to the fullest in the sense in which that expression is often used.  More important when you look back on your life are the unselfish things you have done, the love and support you have given to others, and the sense that you have made the most of your talents and opportunities. I have learned that growing up is the work of a lifetime and that we should strive to continue growing until the end of our days. 


“I know that when my life draws to a close I will be sorry to say goodbye to our children and grandchildren, to the adventures that await future generations, to Verdi's and Puccini's operas, to Beethoven's and Mozart's symphonies, to Shakespeare's plays and Whitman's poetry, to Michelangelo's and Cézanne’s masterpieces, to Dickens' and Fitzgerald's and Tom Wolf's novels, to revising my own never to be published novel, and to the good movies Hollywood occasionally produces.  I will miss the everyday things like reading the newspaper in the morning while drinking my first cup of coffee on our balcony, the sight of the dogwoods and azaleas coming into bloom every Spring, the view of the Potomac River from our breakfast table, the awesome display of every shade of nature’s colors before the leaves gently fall to the ground, and the occasional blanket of snow that covers the city and the silence it brings with it.  Most of all, I will miss my Su Kim who has done so much to ennoble my life and to bring joy to every day we have been together.  If there is a heaven or a Blissful Pure Land, I cannot think of anyone I would like more as a companion for all eternity.


  “Yes, I am sorry to be leaving this world and the pleasures and rewards it has given me.  I do not leave it mournfully, however, for that would be showing ingratitude for my time on Earth.  In truth, I feel blessed to have been chosen from among all of Creation to live in mind and body as a human and in the best of all nations, the United States of America.  It is life, not death, that I regard as the greater miracle and I say thank you God for allowing me to be part of this world.  


“Goodbye and may a loving God bless you always.”

The Day After....Post-Op

Two weeks ago today I was at Brigham and Women's Hospital.  It was the day after my surgery for bladder cancer.  Over the prior several months, throughout my chemotherapy and, especially over the prior several days, it was the day that I had been waiting for -- the day after.   It was the day for me to begin to focus on recovery.   I could put my fears & anxiety about the surgery behind me (I was still here!), and there was no additional chemotherapy in the plan.  Unlike the prior few months, the remaining challenge was relatively concrete -- heal, rebuild my strength, and work towards getting back to my life.  Yes, there was uncertainty about cancer, and whether we were finally ahead of it.  But, on the morning after the surgery, I was looking forward.  I was happy to be alive....still am!


Benji posted a brief update, on my behalf, when I came out of surgery safely.  Since then, I've thought about writing several times, especially since last Monday, when I got home from the hospital.  Of course, thinking about writing, and having the focus and energy to write are two different things.  This afternoon has been good, more energy than the past few days.  A good time for an update!


First, some of the important (and good!) details:

• the surgery went well.   I was in the OR for about six hours, and came through healthy enough to go straight to a regular room, instead of intensive care.   My surgeon described the surgery, with the expected complications, as "text book".
• the key decision, the choice between a "neo-bladder" (internal) and a urostomy (external), was made by the surgeon during surgery.  In a key area, there was not enough salvageable tissue for the neo-bladder, so we went with the urostomy.  As I've written before, that was something of a relief for me.  The urostomy will take some getting used to but, for me, it beats having a lot of complications from a neo-bladder.
• And, the best news came last Friday morning, about 10 days after the surgery ... all of the biopsies taken during the surgery came back negative!   This confirms what we saw in the last MRI, that there is no sign the cancer spread beyond my bladder.  There are no guarantees with cancer, but that was wonderful news.  I'll be monitored closely, but this news makes it that much easier to focus on healing, and the future.

To all of you who have been thinking of me, praying for me, and, in so many ways, helping care for me these past months, you've carried me a long way - the chemo and surgery are done, and the biopsy results are as encouraging as I could ask for.   Thank you!!

May 28, Checking Out!

My six days at Brigham & Women's went well.  I was in the urology ward, where the nurses, care assistants, doctors, and others were all very attuned to my needs.  My big surprise was coming to fully realize how extensive a surgery this was.  I'd been referring to it, and thinking of it, as a bladder surgery.  No small task, but contained.  Of course, I thought of it that way even as I described it as including removing a section of my intestines and building a replacement (internal or external) for the bladder.  A few of the staff on the urology floor described it to me as the most extensive urological surgery that they do.  For me, the truly unappreciated part was that this was intestinal surgery too -- and that it would take a bit to get my intestines working properly again.  Somehow I thought I'd mostly be focused on the incision healing, and the wound around the urostomy.  I've since learned better.  In any case, with me up and walking every day, and some signs that my digestive system was beginning to work again, they let me know on day #5 that I would be discharged on day #6, May 28th.  I appreciated that day's notice, as I took the news with mixed emotions -- it is still the early days of my recovery, and there was a lot of comfort in depth of care at the hospital.  Being home, even with the care of family and friends and regular visits from home health care, would be an adjustment.   

I've been home since May 28th.   Seems a long time, though I haven't quite settled into a new routine yet.  The advice from one of the home health nurses was pretty straightforward -- focus on rest, then hydration/diet, and exercise, in that order.  I'm doing well on rest!   Some days, even little things (e.g., a shower) can take a lot of energy, and leave me ready for a nap.  On days with warm weather, I've been good about getting out for short walks (emphasis on short!).  Short visits are energizing!  Still not eating much, until the digestive system settles down -- I expected pain/discomfort from the wounds that are healing, definitely didn't anticipate that it could be trumped by digesting food!  So, I've mostly been on a liquid diet, though I've tried a few more solid foods.  I'm trying to take it easy, and focus on the adjustment to my new parts (I keep a few spares around), healing, hydration, starting to expand my diet, and, as the weather improves, getting back out for those walks.   No need to focus on all those things at once, or without an occasional nap in between!

Perhaps the hardest thing is not the healing, but the missed moments -- Josh graduated from Prozdor (the Jewish high school supplement at Hebrew College) this past Sunday, Benji graduated from McGill, in Montreal, on Tuesday, and Sara comes home from six months in Israel this Saturday evening.  I missed the ceremonies (unless you count text messages) for Josh and Benji, and probably won't be at the airport to greet Sara's flight.  Shucks!    On the other hand, the whole family (Fran, Adam, Benji, Sara, Josh & me!) will all be here on Sunday.  Considering all that's transpired over the past few months, that is a bit like having Thanksgiving come early this year!


It is good to be home.

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.

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.

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.

At the door for round #4 (chemo, the last round)

Today was day 14 of my third round of chemo.  Round four starts tomorrow morning.   I am looking forward to it with trepidation and excitement.


First, the excitement....this will be the last round!   Hooray!  It will be good to have this behind me, and to start to move on to the next phase of treatment, in about five weeks -- surgery, and recovery.


Round three taught me a lot about what they mean by the dosing for chemo being "cumulative".  It's been a grind.  The dark days were longer, extending well into the second week, and the climb back has been a challenge.  I can see now why they don't allow a round five!  


Throughout the first three rounds, I've been trying to exercise when I could - it helps with the recovery, and is one indicator (for me) of the physical impact of the chemo.  That starts with walks, but has progressed back to the cross trainer at our local gym.  In round one, I was back at the gym on day 9, and doing an hour each day on the cross trainer.  It felt good.  In round two, I was also back on day 9, initially limited to 1/2 hour but quickly built back to 45 minutes per day.  That was my limit.  This cycle, it was two days later before I made it back, day 11, and after 20 minutes on the cross trainer, that was it.  I was pleasantly surprised to make it out of the gym on my own, about 45 minutes later.  I went back yesterday for 1/2 hour, my limit for round three.  I'm glad that I'll have plenty of time to digest round four.


In the meantime, I'm ever heartened by the support, prayers, and good wishes of family and friends.  There is a phrase in Hebrew called "chesed" (or, hesed).  The word "chesed" is typically translated as acts of "kindness" or "loving kindness" for which there is no expectation or opportunity for  reciprocity.   In mystical Judaism, chesed is considered the highest 'action' attribute of G-d.  There are many examples, but some are bringing a new life into the world, burying the dead, and visiting or taking care of the ill.   


Having been blessed with good health for most of my life, I never fully appreciated what it means to be on the receiving end of such kindness.  Now, I'm blessed with it -- the deep support and care that I'm receiving from my family, and the many ways that friends, near and far, have reached out, sometimes just to say "I'm thinking of you".   Each means a lot to me and is a source of new strength, helping me along on a sometimes difficult path.   It is also an education to me as, at times in the past, I've found myself not knowing what to say, so I've remained silent.  Turns out, the words need not be any more eloquent than "I'm thinking of you".  


As the door opens to this last round of chemo, I'm excited that this phase of my treatment is almost over, a bit anxious about the next two weeks, and truly appreciative and stronger for the support and kindness of family and friends.  You are all a constant source of strength, the wind at my back -- thank you!

Chemo and Passover (Round 3, Week 1)

Wednesday...finishing the "long day" at DFCI

My third round of chemo started Tuesday.   This Friday and Saturday evenings are the first two nights of Passover, the nights of the Passover Seders.  For as long as I can remember, Passover has been a big holiday in our home, and one of my favorite Jewish holidays.  Since we've been married, Fran and I have always hosted big festive Seders.  It is one of my favorite meals to prepare, an always special gathering of family and friends, and an important reminder of the many things that we have to be thankful for.  This year will be different, not because we don't have a lot to be thankful for -- we do! -- but, the Seders are being hosted by family and friends, who kindly offered to host.  And, this year, I likely will not be able to participate.  I will miss it.


Passover is often referred to as a 'celebration of Jewish freedom'.  It is that, for sure. But, it is much more than that, in addition to always being a special gathering of family and friends,  it is a reminder of Jewish responsibility and of the positive impact that we can have on the world around us.  If you'll indulge me, since I probably won't be at a Seder, there are a few parts of the story that always stay with me:

• after generations of exile as slaves in Egypt, the beginning of our redemption started with one person, Moses, rising up against the oppression.   While our ultimate escape from Egypt, and freedom in the land of Israel, came with G-d's intervention, Moses made the first move....one person can change history
• after escaping Egypt, we spent forty years in the desert, two generations, before we re-entered Israel, the land of our ancestors.   That is a long time, it means that most of the people who entered Israel were not the slaves that escaped Egypt, but their children.   Yet they fully embraced the story of redemption, and it's telling to every generation since "as if you were there".   What does that mean they were doing for those 40 years in the desert?  Among other things, it means that the parents, and elders, were teaching their children to embrace their history, appreciate their freedom, and respect the responsibility that comes with that freedom -- specifically that as long as their are oppressed people, Jewish or not, we have a responsibility for work for their freedom.   From those roots, we have the continuing commitment today of the Jewish community to world service, justice, social action, outreach, and philanthropy.   It is a tall order, and a lasting legacy of our ancestor's commitment to teaching their children the 'story' of our own redemption being told and reflected on "as if we were there".
• during our 40 years in the desert, Moses received the Torah, the law, on Mt Sinai.  We entered the desert as Israelites, descendants of Abraham.   We returned to Israel as Jews.  At Mt Sinai, we rejected idols and become the first of the monotheistic religions.  From those roots, came each of the other monotheistic religions, Christianity, Islam, Bahai, Druze, and others.  It is worth recalling that we are all of the same roots.

I'm sure that the Rabbi's and better Judicially educated among my friends and readers may have some corrections to my comments or interpretations.  And, they and others will each of their own reasons for why Passover resonates strongly with them.   But, these are mine.  On this year when I probably will not be at a Seder, thank you for letting me share them. 


On this Passover, I am truly thankful for the freedom and ability to fight this cancer, for the unconstrained love of my family, the kindness, prayers, and good wishes from friends across time and space, and to live in a time and place where we have the medical care and knowledge to put the odds in my favor.


To all of my family and friends celebrating Passover this year, I wish you a Chag Sameach.


And, to each of my friends celebrating Easter this year, Happy Easter.

The 'once and future' me.  Courtesy of Hazon, and the 2011 CA Ride.

Bookends on the Week (Chemo Round 2, End of Week 1)

I'm halfway done!  (with the chemo)  Starting to find some energy and appetite today.  I'm sure both will strengthen throughout the week.   In the meantime, wanted to share this brief post.  I'll let the photos, the bookends on my week, speak for themselves.

Last Wednesday, after finishing "round 2" at DFCI

Today

Locked, Loaded, and Life Goes On (Round 2, Week 1)

Each cycle of my chemo starts of in three steps - a morning at DFCI for various blood tests and to see the oncologist or nurse practitioner and their team and to receive the first of the four chemicals in the MVAC "cocktail".  That is the short day.  Yesterday was the longer day, just one appointment at Farber, but it is the appointment where they load in the spicy stuff.  That takes 4 - 6 hours, and pretty much knocked me out in round 1.  Today, day 3, I got a booster shot that is a key component of the trial.  It is meant to stimulate the growth of white blood cells.  The injection is administered at home, by our retired veterinarian and, not coincidentally, my mother in law's boyfriend.  He makes house calls.


I like the structure of the medical team - carefully selected cancer care professionals at two top academic medical centers and, also carefully selected, our retired veterinarian.   At this point, I know that my medical care is in good hands!


Based on round 1, the Team at Dana Farber gave me a lot of helpful feedback today/yesterday on dealing with the chemo.  A few things I learned:

• if possible, they want me to try harder to stay more active during the 'chemo fog', that first five days.  They would rather that I not, again, lose 10 lbs in 5 days.   That said, I think that their bigger concern is the slippery slope from chemo fog/funk to depression.   They also mentioned that Taffy, who I took out for short (very short) walks on three of those days, might prefer 2 short walks/day :-).   
• that was the clinicians talking.  There is also a therapist on the team.  He stopped by yesterday to visit during my longer treatment.  He was happy to hear about this blog, and had an even longer list than I initially had for why it is a good thing for me to write it.   
• And, about that depression thing.  This is a very emotional time, probably a few decades of tears/emotion, some for joy, some not, compressed into a very short time.   Fran and my family have been with me each step, and I've been overwhelmed (in a good way) by the outreach, good wishes, and support from a lifetime of friends, and some strangers too.  All of that support, and concern, makes it that much easier for me to stay focused on where I plan to be at the end of this.  It keeps the sense of humor intact, get's me to the gym, helps with whatever the next step requires.  If you're reading this, you're part of my team....thank you!!
• And, lest you wonder, I'll be sporting a different hair style in the next week.  What started slowly, a couple of days ago, is getting faster each day.

In the meantime, in wonderful ways, life goes on.  After dropping me off at Dana Farber, Benji left yesterday for six weeks of exploring the hills, valleys and beaches of South America, Adam is in Mexico, Sara is studying in Israel, and, starting tonight, Josh (who was in Israel a few months ago) is hosting an Israeli exchange student here in our home.  We've come a long way from day when the idea of a family adventure was packing the kids into Fran's mini-van or my Suburban, and heading out to see distant family, a national park, or to go camping or skiing.  

My immediate family awoke this morning in four countries, on three continents.  I look forward to everyone returning home, safely, with stories to tell and photos in hand.  I hope that my kids never lose the yearning to explore....and to return home! 



I know it is a day early, but I don't anticipate writing another post tomorrow.  So, Shabbat Shalom.  Enjoy a peaceful, healthy, relaxing Shabbat.

Round 1, Week 2...the fog lifted!

I didn't know what to expect from chemo.  After just just the first round, I still don't -- my experience, you might say, is limited.   But, now I do have a much better sense of why they call the second week of each cycle the "recovery week".  Earlier, I'd been more focused on this as the week (at least at the beginning) where my immune system would be most impaired.  That focus was consistent with my initial fancy that I'd be up and about, plenty of energy, just wanting to be careful not to pick up any errant germs or viruses.


That was all before I'd met week one, the knock out punch.  Not even sure where it came from (though I have my suspicions!).  I got home from my second day of treatment (two Wednesdays ago) at DFCI, the 'long day', which is when they administer the cisplatin - the most toxic and abundant component of my chemo cocktail.  Felt fine, relieved to have the day over.  Then, a hot flash.  Then, chills.  And then, with a few moments of light in between, it was Monday morning.  It is not that I want to describe what transpired in between, that isn't the purpose of this blog (it is when I'm on the Israel Ride that I want to share all the visuals -- they are wonderful!!).  It is just that I couldn't describe it if I wanted to.  Wednesday evening till Monday passed largely in a fog.  It is probably best that way.


Come Monday, the fog started to lift.  And, but for one set back last night (fortunately, there will be other Shabbat dinners), I've felt better and stronger every day this week.  By yesterday, I could even taste (and eat) food again!  And, this morning, I managed an hour on the cross trainer at the gym - no records were broken, but it felt good to be there.  Lest you wonder, the hour did not include the five minutes that I spent disinfecting the machine before I was comfortable touching it.  Yes, I could become compulsive about that.


The most important update:   Fran and I met yesterday morning with my new surgeon/specialist.  He was excellent.  He went though my recent medical history with us in detail, starting with his insight to the biopsy results from last November, continuing through what is going on inside now, during the chemo, and then giving as a very helpful description, with impromptu drawings and sketches, of what the surgery will entail.  We now have a much better understanding of what they meant when we were told that the surgery would be "complicated", and comfort that we are in the hands of an experienced, focused professional.  There is no constructive comparison between this meeting and our last meeting, a couple of weeks ago, with my (now former) surgeon.   Fran pressed the doctor on his specific experience (he has done the surgery over a thousand times, about 50 times with my complications), his attention and focus on my case, and a myriad of other questions.  It is good to have her there, advocating for my good care.   The doctor responded, in detail, to all of our questions.  He is was a strong advocate for the clinical trial that I'm in for the chemo, as it is a more aggressive approach than would otherwise be used.  As he worded it, "we only get one shot at this".  He left me comfortable that we are now taking that shot with the best team, and the best ammo.


I want to write more about how meaningful it is to me that so many have reached out, each in their own way, to me or my family.  You are part of the journey, for sure.  Even more important, you make it that much easier for me to stay focused on where I want to be at the end of this, not on the details of where we are now.  I'll write more about that another time.  For now, I just want to say thank you -- your kindness and thoughtfulness are more touching than I can say, and truly appreciated.


Round 2 starts Tuesday, at DFCI.   


Shavua Tov.  Have a good and peaceful week.

Chemo, Round 1 - On the Wisdom, Wit, and Shoulders of Family and Friends

My treatment started in earnest this week.  I am in a clinical trial called "dose dense MVAC".  It is seen as more potent than the more widely used "Gem-Cis", and less toxic than the traditional MVAC.  The goal of the chemo is to reduce or eliminate the tumors prior to my surgery.  Either way, the surgery goes forward.  It is called neo-adjutant chemo therapy.  I'm learning so many new words and phrases of late.  I hope none of you ever need to learn them.


In any case, the chemo goes for four two week cycles.  The first cycle started this past Tuesday.  The first three days of each cycle are treatment, the next 11 are your body processing the treatment, then you repeat (just like shampoo...wash, rinse, repeat).  After the fourth treatment, we take a break of 4 - 6 weeks, then surgery.


That's it for the technical stuff, for now.


Mostly, I want to thank everyone who has responded so warmly to my earlier posts.  Your words of encouragement and good counsel are uplifting, at a difficult time.  Thank you!  You help keep this from being a lonely road.  And, not without consequence -- virtually everything that I read indicates that part of the fight against cancer is mental, physical, and diet, in addition to the insight and care of the team that I'm working with at Dana Farber.   At a time when it would be easy to be very down, the encouragement I've received from friends and family, on FB, via email, in private, etc., is truly uplifting.  I only wish that I had the energy to respond to each of you in person.   In time, hopefully, I will.


My Mom and Fran have both now put my oncologist through the grill. Hopefully their questions were answered.  He, of course, has the disadvantage of coming in midstream -- his focus is where we go from here, not how we got here.  Those questions are a bit moot, in terms of my treatment.  But, we will revisit them too.  Right now, they are not the focus.


And, my kids have been, well, wonderful.  This can't be easy.  But, they've all reached out and been very supportive.  I hear daily from Sara, in Israel.  Benji left for Toronto this morning, but has been a great help all week.  Adam is coming over again tonight, and Josh is here -- stuck with me!   And, ever supportive.  They are each a gift.


For now, lest you wonder, the short term effect of the initial treatment has largely been to sap me of energy.  Not sure how much of that is the treatment, as it's maximum impact isn't supposed to hit for about a week, or just a response to all that is going on.  I'd guess it is more of the latter, for now.   My big achievement yesterday was to take Taffy out for a walk -- he is loving this!   Today, I actually worked for a bit, on transitions.  I am privileged to work with a deep team that can manage through these things.  I enjoy my work, my colleagues, and my clients, so hopefully will continue to contribute some during the chemo.  I know that I won't be available through the surgery and recovery.


That is it for now.  Thank you, everyone, again.


Shabbat Shalom.

Stepping off the curb -- Chemo

Last week was all about the machinery of the cancer care system coming into motion for me.  It lagged my last biopsy, and the disappointing results that it showed, by a week.  But, thanks to the very helpful people at the Dana Farber Cancer Institute (DFCI) in Boston, things started to fall into place very quickly.  In short order, there were two oncology appointments, an MRI, CT Scan, an appointment with my current doctor and, I'm sure, a few things that I've left out.  By Thursday, we had two options for the chemo therapy, and an outline of some of what to expect over the next 10 weeks.   I still have a very real frustration/concern that we are starting late.  In that context, it feels good to finally be stepping on to the trolley.


Being treated at Dana Farber is very personal for me.  Reminders of my cycling are everywhere.  In 2001, when I took up cycling as a hobby, I needed a goal to make me take it seriously.  So, despite having never pedaled further than about 20 miles, I registered for the 2002 Pan Mass Challenge.  It was my first organized ride.  It raises funds to support children's cancer care and research at, you guessed it, the Dana Farber Cancer Institute.  I had no immediate connection to cancer at the time.  But, as a parent, I couldn't imagine a more difficult pain than a parent feels for the loss or serious illness of one of their children.  The PMC was the right ride for me.  I've done the ride each year since, and with one or more (sometimes all four!) of my kids for each of the past nine years.


In any case, among other things, the connecting bridge between two of the buildings at Farber is named and decorated as the PMC bridge.   I can't describe the emotions of my first walk over that bridge.. I've biked well over 1,000 miles on the PMC, all easier than the short walk over the PMC bridge.


Today, Monday, Fran and I had a final meeting with my oncologist to review the plan for chemo and sign the necessary consent forms and, of course, a few more tests.


DFCI is very team oriented.  Today, in addition to the oncologist, we were joined by a pharma doctor and another member of the team.  The pharma doctor gave the complete run down on all the drugs in the trial.  Strong stuff.   Of course, we all have our preconceptions of chemo and, at least for me, they are scary.  This, to hear it described, is something that they've gotten pretty good at "managing".  I hope that is correct!


If it goes well, the process will be a three day, every other week affair.  Day one is a less toxic chemical, administered in less than an hour.  Day two is the prime time stuff, administered over 4+ hours -- apparently they bracket the toxic stuff with something to keep the kidneys well hydrated, to minimize potential damage.  Day three is just an injection...I can administer it at home, if I'd like.   They will give me a lesson tomorrow.  Sounds like the off week in each two week cycle is the more worrisome one, where the immune system is weakest, and I'm likely to feel most fatigued, etc.   And, is cumulative...will be more pronounced after the second cycle than the first, etc.  Oh, and I may lose some, or all, of my hair (temporarily) or some of my hearing (perhaps not so temporarily).  Then, four to six weeks after the last treatment, the surgery.


During the chemo, to the degree that it works for me, they encouraged maintaining a normal schedule, diet, and exercise.  Of course, my "normal" schedule includes a lot of travel, which is not recommended.   I may also want avoid public transit and the commuter rail.


Finally, I asked about my favorite exercise, cycling.  The pharma doctor thought I was asking if I could bike to the hospital for the chemo.  That answer was a clear NO.  But, beyond that, they were all clear that if I feel up to it, they would encourage it.  I'm thinking it is time to set up the indoor trainer again :-).   Hope I don't shed all over the family room ....


In the meantime, my Mom is coming up tonight to join me for the first couple of days of chemo. This isn't something a mother should ever have to do.   That is why I ride the PMC!   Hopefully, for the next generation.


For me, a mixed stew of emotions....anxious to get started, angry/upset to be here, appreciative of the care and support from family and friends.  This would be a very lonely spot to occupy alone.

Transitions

I started this blog in 2008, to chronicle my participation in The 2008 Israel Ride, my third Israel Ride.  At the time, I wrote: "I will keep it as my journal for the ride, then see where we go from there."  I've kept it as my journal for three more Israel Rides, 2009, 2010, and 2011.  It isn't like there was nothing else going on these past few years -- my four 'kids' all continue in their transformation from great kids to amazing (in the unbiased eyes of their dad) young adults, and couldn't be a source of more pride or pleasure for me.  In 2009/10, I was dealing with prostate cancer, including major surgery on March 18, 2010.  My father passed away this past December.  And, in addition to the Israel Ride, there are several other bike rides, such as the Pan Mass Challenge, that I have also done each year.


As important as each of those things are to me, there are a host of reasons (family privacy, the way that I like to be 'defined', my personal passions, etc.) that had me stick with the original focus, The Israel Ride.


Now it is time to 'see where we go from here'.  For the much of the past year, I've been wrestling with a new challenge, bladder cancer.  Initially it was missed, then it was classified as a relatively manageable, "non-invasive" cancer -- one that is readily contained.  Over the past 2 weeks, however, we've confirmed that it is more advanced than that, calling for much more aggressive treatment.  So, where do we go from here? After giving it a lot of thought, I've decided to try to use the blog as a bit of a personal resource.  I hope that it will permit me a few luxuries during a challenging time:

• the luxury of being able to keep my friends informed without me or my family repeating the same, sometimes difficult, information too many times;
• the opportunity, if I find it helpful, to chronicle my story, thoughts, and experiences; and,
• perhaps the gift of being able to in any way help others who face similar situations, by sharing some of my own experiences and learning.

I'm not sure how chronicling this will work out.  I find it much easier to write about good things, like the Israel Ride, that truly excite my passions and interests, leave me feeling wonderful, and don't infringe on the privacy of others (my reason for not blogging more about family - it is for each of them to decide what, and with whom, they like to share things with, not for me).  This cancer, on the other hand is, well, scary.  That is not my thing.  In this context, it isn't anyone's.  So, please be patient with me.  Read it if you like, or not -- the choice is yours.  I'm writing it to try to keep you informed and, perhaps, to create my own chronicle.  If it works for me, I'll continue it.  If not, I won't.  I look forward to turning mine and the blog's attention back to the Israel Ride, and good things.


For now, I appreciate your prayers and support.