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.
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.
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.
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.
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.
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.