Friday, September 30, 2011

A Quickie


This is just a quick post.  I am enjoying having extra free time in my life, doing more recreational reading (and I always read a lot).  I am most of the way through Oliver Sack's The Mind's Eye.  I have always appreciated his books for their keen observation and deep compassion.  In one chapter of this recent book, he describes vividly his experience with a melanoma in his right eye.  He explains that such melanomas seldom spread and kill, but often result in the loss of sight in the eye.  I was struck by the following, midway through the chapter:

Having cancer, any cancer, means an instant change in status, in one's life.  The diagnosis is a threshold beyond which lies a lifetime, however long, of tests, treatments, and vigilance -- and always, whether conscious or unconscious, a sense of reservation about the future.

Others who have been at this longer than I may have a different viewpoint, but this struck me as very true.

Monday, September 26, 2011

How much do I want to know?

To Google or not to Google?  Some years ago when I had shingles, I turned to Google while I was still quite sick. Bad idea. One site cheerily said that I had a 50% chance of no pain after six months. (P.S.: I still feel the inflamed spot on my back.)  Yet I am a scientist. I could read and understand the original literature and be empowered. When my chemist friend Mary had a severe case of Lyme Disease, she became an expert, and made sure she was getting the right care.
So how much should I read?  A friend from the lake had a nephrectomy a few years ago, successfully treating early stage renal cancer. He offered to lend me a book. I have politely declined, twice. Why? In part because my doctors (GP, surgeon, and two oncologists) have made it pretty clear that my situation is bad. Contrary to the portrayal in drama and literature, no one has given me “xx months to live”. But I haven’t asked the question.
So I decided not to Google. About a week ago, I opened the second month’s box of Afinior (aka Everolimus, aka RAD, the pill I am taking as part of the treatment) and the package insert fell out. I looked at it; big mistake. The top item was a graph: survival rates of patients with advanced renal cell carcinoma, with and without Afinitor. Without, most of this particular set of patients died in a couple of months, with, closer to a year. Is this something they really want patients to read, or does FDA mandate this? This may be improvement, but is hardly encouraging from my perspective. Later that day I succumbed and Googled.  Patients with advanced renal cell carcinoma have less than a 5% five-year survival rate, with average post-diagnosis longevity of 1.1 years.  So now I know…or do I?
Every cancer is different, so scary statistics are not helpful. 50% survival is meaningless at the individual level: you are either dead or alive, unless you are Schrodinger’s cat. Mine is atypical (non-clear cell) so these numbers may not apply. It is sarcomatoid (bad), but chromophobic (potentially good, according to a friend). I am on the latest therapy, combining two agents, at a top cancer center. The first oncologist I saw made an important point. Stage IV covers wide territory: the cancer has advanced from the original site, a little or a lot. Mine is the former, no other organs involved. (Lymph nodes don’t count as an organ, I think).
No more Googling. I do listen carefully to what the doctors say, explicitly and implicitly. But I might be mis- or over-interpreting their comments. On the day he gave me the diagnosis, my nice GP gave me his cell phone number and told me to call anytime, even though I had not signed up for his newly-established concierge service. That seemed serious. BC (before cancer) I had  Moh’s surgery scheduled in mid-August to remove a small basal cell carcinoma (BCC) from my chin. I asked the oncologists at MSKCC what to do. The young associate thought I should proceed; his superior told me to cancel.  I happily did so. Did he mean that I an unlikely to survive long enough for this to become a problem? Or was he just saying I had enough on my plate, for now?
I am definitely contemplating my mortality, but not counting. This actually has advantages. I used to worry seriously whether I had saved enough for retirement: my Great Grandmother lived to 106, and who knows what will happen to the economy decades hence. One worry gone. I have already reformed some of my more parsimonious ways. I kept the internet on at the Pocono house after Labor Day! I am thinking about some fun and interesting travel, health permitting. The future does look different.
More about that in another post.
Future topics:
Optimism vs. realism
Depending on family and friends without overwhelming them (and me)
Work during treatment?
“You look great” and other comments that stump me.
Language pitfalls

Thursday, September 22, 2011

Who to tell and when?

Follow-up
Someone requested the title of the book I mentioned in the previous entry.  It is Crazy Sexy Cancer Tips by Kris Carr.  (Thanks to my chemist friend Kristen for lending it to me.)  It is clearly meant for an audience of younger cancer patients, but still useful.  I don’t picture myself taking up her suggestions about vegetables or sex, but there is lots of other good advice.  Parenthetically, I really did not like that MSKCC gave me a brochure for “the older Cancer Patient” when I was less than a week past my 65th birthday.  Carr suggests that you not capitalize the C in cancer, lest you cede it any extra power.  In the blog title I follow her advice.  The previous entry was also very long; my intention is to keep then shorter and more focused in the future.  I am not sure when I will run out of things to say.  I am also intentionally maintaining some anonymity (my surgeon, my friend) since I am not sure who will read this.  It may seem a bit impersonal, but you know who you are.  I will drop in some first names here and there.

Who to tell and when?

This is a question I faced on day one, and continue to grapple with.  Before the surgery, only a few people: siblings, close cousins, a few very close friends.  Not my elderly Mom; that is part of a different story.  I went back to the lake for the weekend between diagnosis and surgery, and was really not ready to deal with it.  I kept a pretty low profile.  I did encounter one friend who asked my whether I was free the following week.  One thing led to another, so I told her.  I went to a dinner party given by a very old friend (the friendship, not the friend, old) and I didn’t even tell her.  I really enjoyed pretending that everything was normal, and certainly didn’t want my problems to cloud the evening.  Great cruise on the lake, and lovely dinner; thanks Penny.

The day before I went into the hospital I sent a few e-mails.  I needed to tell senior colleagues in my department as soon as possible, since I had already decided that I did not want to teach during the fall term (a future blog topic), so they could think about getting someone to replace me in the big General Chemistry course.  I told a few more close friends.  I find that e-mail is really helpful.  I have never been a great phone person, but even if I were, I think that a carefully composed e-mail allows you to say as much as you want to, and no more, and gives the recipient a chance to process the news.

Once I was out of the hospital I wanted to tell more people.  But who?  I don’t like it when information is a closely guarded secret, privy to only some, but at the same time it seems a bit unseemly to announce to the world that you are sick.  What purpose is served?  I have also often cringed at conversations about someone else’s illness.  Some people oddly find such topics interesting, even if they don’t know the person well; I don’t.  So I made up some lists, knowing in a few cases that one or two of the recipients would certainly pass the news around; indeed I tried to make it clear that this was fine with me. Always the systematic person, I worked in groups: friends from the lake, friends from Barnard (mostly colleagues who, like me, have been around for decades), neighbors, college friends, chemistry friends, senior colleagues from Columbia.  I hesitated a bit on the last group, but I have known some of these guys for decades so it seemed inappropriate to leave them out.   

As people learned of my illness, I received many flowers, wonderful cards, and various gifts – books to read during treatment, an i-tunes gift card, a food basket from Zabars.  Many very thoughtful notes, e-mail and otherwise.  And many wonderful offers of help, some general, others very specific.  I still have the cards and notes, and may need to cash in some of those offers, but not yet.  I sometimes felt a little guilty reading a card: had I reached out to them when they had a challenge?

I have found the advice and support of people who have gone through cancer treatment very important.  A few quick words about how to deal with sympathy (it isn’t easy; thanks Lindsay), how important it is to walk (thanks, Lynn), how to avoid the gloomy people who think they are helping (thanks Kristen).  Rae said that a big piece is suddenly confronting one’s mortality; very true.  But in a funny way, it may be helpful to have a somewhat unusual cancer: fewer people want to tell you about their aunt who did (or did not) make it after the same diagnosis. This is definitely a club no one wants to join, but the members do support each other.

The issue of who to tell and when continues.  My department Chair asked what to tell the students, and I told him to tell them I am being treated for kidney cancer.  Again, no need to hide information, and have some people whispering.  But many people at work don’t know, and why should they?  I went to a lunch meeting this week, sat down next to a colleague (we have never socialized outside of work, but I have always liked her) and she said with a big smile, “How are you?”  It’s a tough question.  My usual answer these days is simply “ok”.  “Fine” seems wrong, whereas "ok" can get you past the rhetorical question.  If people happen to know about your illness, they can ask a follow up question.  In this case, this seemed a genuine “how are you”, so I told her.  I knew that her son had been treated successfully at MSKCC a few years ago, so that was a connection.  But it still seems a lot to drop in someone’s lap when they least expect it. "And how was your summer?" I assume over time that word will spread among faculty.  But it does seem better that casual acquaintances not know: you can deal with them as a normal person, not a sick one.  Do I sound like a control freak?  Guilty as charged.

So posting a public blog seems a big step.  I consulted my big sister and a couple of friends, and they encouraged me.  While anyone can look at this, if they want (I could end up changing this if I later find it creepy), it does give you the choice whether to read or not.  I don’t want to foist my illness on people (family and close friends don’t get a pass here), but this way the information and my thoughts are out there for whomever is interested.  Feel free to share the URL.  But the blogging process is a lot simply to help me think clearly.  This is the 21st century where everything hangs out, even, apparently, for someone who is otherwise pretty guarded.

Future topics:
How much do I want to know?
Optimism vs. realism
Depending on family and friends without overwhelming them (and me)
Work during treatment?
“You look great” and other comments that stump me.