Tuesday, September 21, 2010

Knowns and Unknowns

"There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know." - Donald Rumsfeld

I know that seeing a quote from Donald Rumsfeld on my blog might make you wonder just how much mind-altering medication they've put me on. But his explanation of knowns, unknowns, and unknowns that are unknown, when removed from the context of him obfuscating US intelligence in the Middle East, is actually a helpful frame for capturing my thoughts today. It's day 11 of my first 21-day cycle of IVEG. At this half-way point, I think it's safe to say that there are now some important things I know for the coming months (I have at least two more cycles of this treatment scheduled) and still some significant unknowns.
What I know:
My four day hospital stay wasn't too brutal - I had lots of great company (thanks to friends and my fantastic sister, Becky!) and was so carefully monitored and medicated, that it all went smoothly. The first few days out of the hospital were rough as I experienced about every unpleasant side effect in the book. But I began feeling better this weekend and was glad to be able to celebrate and observe Rosh Hashanah and Yom Kippur. More than anything, I'm just grateful to know more of what to expect the next time around. Being able to plan ahead for when I'll need support, when I can work, when I should rest, which prescriptions to refill when, etc. makes the whole experience more tolerable.
What I don't know:
Some side effects will begin in nadir between days 10 and 14 when I'll likely be neutropenic and my immune system will be most vulnerable. Amongst these known unknown side effects that I am most anxious about is the huge unknown of whether I'm going to lose all my hair this week. You see, as I mentioned in my previous post, this chemo regiment is a combination of drugs I've been given before. Given the mixed hair-loss results from those experiences, I don't know what to expect for the next few days, and after all this time, I'm still not sure how to best prepare myself.
What I don't know I don't know:
Then there are the unknown unknowns. If you have ideas on how to prepare for these, I'd welcome suggestions. In the meantime, I find myself continuing to reflect on all of this during these recent days of awe in the Jewish calendar - a reminder of how significant and insignificant we are and how much and how little we can possibly understand about what happens to us, around us, because of us.

Thursday, September 9, 2010

Coming Out of The Holding Pattern

I first learned the concept of "a holding pattern" while flying into O'Hare. Due to a lack of runway space, or gates, we'd circle above the airport, waiting for when we'd be taken out of a holding pattern and permitted to land. I have found the term useful to describe my medical situation over the past several months. While I waited to find out the availability and possibility of a promising clinical trial, I made the decision to put my current treatment plan on hold, taking advantage of my remission. With that aspect of my life in a holding pattern, I was able to plunge swiftly and fully ahead with other opportunities and was thrilled and grateful to do so.
But unfortunately, like so often at O'Hare, my plan(e) has been diverted. My most recent scans showed an aggressive return in some new places and some where the cancer has been before. I immediately talked with my oncologists in Chicago and Washington, who walked me through the course of chemotherapy treatment that they and I agreed is the best of my available options. It is IVEG, which is not only an apt description of my new dietary preferences as well as my recreational habits post-chemo, but also a hybrid of three drugs that I have had before in different regiments: Gemcitabine, Ifosfamide, Navelbine (also known as Vinorelbine, hence the "V"). Evidently, the "E" doesn't mean anything.
The plan is to do 2 cycles, and then re-stage with scans. If I am in remission, then we will do an additional cycle, then hopefully proceed straight into the transplant. It is a three-week cycle, with one 4-day treatment at the beginning. Needing to move quickly, but wanting the opportunity to celebrate Rosh Hashanah, I am beginning cycle 1 tomorrow Friday, September 10. If things go as planned, I will be in the hospital on Friday through Monday or Tuesday. I will be on the 2nd floor of the Bles building at Georgetown University Hospital starting Friday and would love visitors. Feel free to call or email me, or my sister.
Shanah Tovah to those of you celebrating the new year today.

Saturday, September 4, 2010

Top 10 Books for Cancer Patients

Continuing my list-making into these early days of September, here is my list of the best books for cancer patients and their supporters. The list is biased toward practical lifestyle advice over individual narratives, and of course, unique to my own personal situation. Still, I hope that my particular list has some universal application.

Top 10 Books for Cancer Patients and Their Supporters

10. It's Not About the Bike by Lance Armstrong
One of the first books I read after diagnosis, Lance's book didn't move me as much as some other narratives have. And it's hard for me to look at his cancer experience in a vacuum (I mean, he dated an Olsen twin - that's sorta antithetical to the kind of role model that I'm looking for). Still, as author Kairol Rosenthal writes, "Since Lance's balls and bike became public, we no longer speak about cancer in hushed tones." Lance Armstrong's contribution to movement building for cancer education, awareness, research, and treatment has been critical to all our well-being. And his LiveStrong Foundation and network can trace much of their success to the popularity of his book.
9. Kitchen Table Wisdom by Rachel Naomi Remen
This book was a gift from my dad's friend Arnie, and has been a very powerful resource as I continue to explore the many definitions and means of healing.
8. Illness as Metaphor by Susan Sontag
In a subtle way, Illness As Metaphor provided my foundation of understanding of how my illness is perceived by others, and has given me some context for explaining why I find the romanticized cancer gaze and narrative most prevalent in our culture, so personally troubling. It was also a really well-written, informative book.
7. Crazy, Sexy, Cancer Tips by Kris Carr
Full disclosure: I haven't read all of Crazy, Sexy, Cancer, or seen the entire film, or read every post on Kris Carr's blog. But Crazy, Sexy, Cancer seemed worthy of the list because I like her message and means, and deeply admire her spirit and approach. Most importantly, Crazy, Sexy, Cancer is a source that many people deeply relate to, especially younger women.
My friend Barbara gave me this book by former MTV VJ, actress and model Karen Duffy, when I was first diagnosed. It was the first book I read about a young woman facing a serious illness, who handled it with her own brand of humor and dignity and it made me feel hopeful that I could do the same.
5. Life Over Cancer by Dr. Keith Block
Dr. Block created the Block program for fighting cancer for people who are at different places along the cancer continuum. It's a comprehensive plan that patients can implement themselves, incorporating holistic principles without asking patients to chose between "conventional treatment" and other approaches. You don't have to follow the plan by rote - you can glean some of the great lessons to incorporate into your own plan. I have found it valuable in this way.
4. Everything Changes by Kairol Rosenthal
I've only just finished this book, which has been regularly recommended since my diagnosis but I hadn't picked up. It is #4 on this list, but in terms of books that provided emotional catharsis, it is my #1. There were several times in the process of reading it that I had the surreal feeling that somehow Rosenthal had read my journal, and had to confirm that I was not the subject of a particular case she was writing about. That is precisely why her book is such a gift: I heard my own voice and my own experiences reflected in so many different aspects of her book that it made me feel less lonely, understood, heard. That's a pretty big lift for a book, but time and again, young people with cancer express just that after they read Everything Changes.
3. Cancer as a Turning Point by Lawrence Lashan
A wise woman has often said to me during these past few years, that, for better or worse, I will never go back to being the person I was before I had cancer. That is an essential truth of this experience which is mainly about the emotional and mental consequences. Cancer as a Turning Point focuses on these aspects of health. I think this book is one of the best for caregivers and loved ones, as well as for cancer patients, and is one of the best resources for utilizing the mind-body connection to fight cancer.
2. Choices In Healing by Michael Lerner
One of the worst moments in my cancer journey was when I asked my oncologist at GW what else I could be doing to make myself healthier besides chemotherapy and radiation, and he said, "nothing." This book is the antidote to the sting of his reply. It's the foundation for alternative and supplemental healing approaches and choices.
1. Anti-Cancer by Dr. David Servan-Schreiber
I stumbled upon this book when I was at Borders buying a gift. There it was - starring at me from a shelf. I picked it up, began reading and felt like it was fate. I have used it somewhat like a textbook since then, trying to outline a blueprint for the lifestyle changes that likely reduce risk of cancer and slow it's growth. Anti-Cancer was a gateway to all of the other resources I have explored since, partially by dint of being the first book that introduced these topics to me, but largely because it is such a perfect explanation of complex science, distilled for lay-people.