My blogging history:
2012: diagnosed with and underwent treatment for Primary CNS lymphoma in my brain.
2012-2013: blogged on Caring Bridge.
2013: moved to Blogger.
2017: diagnosed with bladder cancer and blogged through 14 chemotherapy treatments and 37 sessions of radiation therapy, each with its own t-shirt and musical selection.
2018 to February 2020: Treated every 3 weeks with pembrolizumab for spread of bladder cancer to lymph nodes. As of June 2020, continue to be cancer free.
One of the many good
things to come out of this odyssey is that I have become a far more patient
person. In years past, I always kept myself on a strict schedule. My daughters
can testify that I have a long history of becoming agitated when things take
longer than expected.
Yet over the past
year and a half I have spent hours and hours waiting for appointments and it
does not bother me. Given that reading is such a challenge, I am often left
with nothing to do in those waiting rooms, but somehow I don’t mind. This is
not a bad thing. I like the calmer, more patient, me.
But the old Rebecca
may be hiding in there, waiting to come to the surface. I was in the rental
office of our Sharon apartment to speak with them about why I am having
difficulty logging in to my account on the web portal, which is used for
service requests among other things. The young woman at the desk was very nice,
but she was the sole person in the office and, each time the phone rang, she
had to answer it. At one point she received three calls back to back, each
requiring some amount of her time. I sat there watching her chat with the third
caller and started to think “I have so much to do and I do not have time to sit
here waiting for this person!”
I had to chuckle.
Within a week or two after each MRI, I begin to wonder how I know that I am still
alright, that the tumor has not returned. With good reason, oncologists talk
about remission rather than cure. Every time I forget something I
wonder whether this is a sign of the beginning of that process. Is my impatience a
sign?
Either
way, impatience is
not a virtue. Forgive me for kvetching,
but is it too much to ask for a different sign that I am doing alright?
I just sent an e-mail
message to a dear friend who had written to me wondering if I have been
receiving her messages, because I had not responded. I closed the note saying “My
sincere apologies and much love are attached here." Then I pushed the "send"button, a message popped up asking me if I had forgotten the attachment!
That is both
reassuring and a bit frightening. While I appreciate being reminded, there is
something a bit unsettling about the feeling that someone out there really is reading our e-mail messages. But
given my routine memory lapses, I can use all the help I can get.
We had a most
enjoyable Sabbath. Friday evening, Dina and Aaron and the children joined us
for dinner. We actually made something without a specific recipe, something we
do not do very often. But I had an idea and we think it worked out pretty well.
We stuffed bell peppers with rice, chopped tomatoes, cheeses and herbs and
baked them. We also had company for Sabbath day lunch, two couples, one of whom
we knew when we both lived in Dallas in the early 1980s. Their daughter is
right between Simmie and Dina so they were all very good friends. We left
Dallas and moved to Sharon and we like to joke that they followed us there. We
waited for them to follow us to New York (which is where they both started) but
they never did. Since we renewed our Sharon life we have been able to pick up
where we left off and enjoy each other’s grandchildren.
The other guests were
our friends Hedy and Mark, about whom I had written recently. Mark also
continues to struggle with some of the side effects of his tumor and treatment.
But he is amazingly upbeat, and when we commented on that he explained that if
he looks at his life, he has had a multitude of blessings: a wonderful wife, a
fulfilling career as a physician, four talented children and now two
grandchildren, and a myriad of friends. He tries to look at this cancer against
that background, and he figures that the balance is definitely on the plus
side. That thinking may not work for everyone, but I am grateful to say that it
really works for Barry me, and we appreciate his doing such a wonderful job
articulating it.
Our children and
grandchildren planned a trip to go apple picking today. We would have really
enjoyed this but I called the orchard to ask about just what was involved to
determine how difficult it might be for me to navigate. The man was very nice
but it was clear that it was simply not an appropriate outing for me. The
children went on their own, and we had a sneak preview of the pictures and I
could see we made the right choice. They did bring us back a lot of different
apples with names we had never heard. We tried one and it was delicious!
Meanwhile, we made
dinner for everyone, Baked Pasta with Cauliflower and Cheese from one of the
old Moosewood cookbooks, a long-time family favorite. This is basically how to
take a very simple dish and turn it into a gourmet feast that pretty much
dirties every pot in the kitchen to make! The recipe makes a huge amount and
all I can say is that there are only a few cups left, so it’s fair to say that
everyone enjoyed it.
I just realized that
I have written about this dish before, back in late February! Ah, the wonders
of word processing. You go to “find” and
type in “baked pasta” and it finds
it!
We put together the
casserole in the morning, and then went to see the new Tom Hanks movie, Captain
Phillips. I was a bit leery about this one because I knew there was a good
deal of violence in it. Of course since it is based on actual events, you know
going in that Tom Hanks survives this ordeal. It is gut-wrenching to watch, a testimony
to the outstanding cast and script. Still, I could not help but wonder why I
was willingly watching something so painful. At one point I leaned over to
Barry and said that this film made chemotherapy look like a walk in the park. The
final few minutes of the film were especially gripping, with no effort to
sugar-coat the impact of the events. Tom Hanks has proven himself a superb
actor again and again, and this is surely a worthy addition to his resume.
We came home to put
the casserole in the oven and cook the carrots and were stunned to see an
e-mail that someone we know in Sharon has just been diagnosed with a rare and
difficult-to-treat cancer. All that I might think I have learned over this past
year and a half has not prepared me for what to do and what to say. It is
simply too painful for words.
I will be staying
here in Sharon all week because Barry is travelling to a meeting in Cambridge –
not the one in Massachusetts but the original Cambridge in the United Kingdom. How
could our daughters say “no” when he asked them to look after their old mother
while he is away? So they are stuck with me, while I have the pleasure of
spending time with them and our grandchildren. It surely seems to me that I am
the real winner in all of this.
Yesterday was my first memoir writing class. The class size
is quite a bit smaller this term, which I think will be a good thing. I am
still by far the youngest; a few of the other women (no men this term) are
close to my mother’s age. Our first in-class assignment was to write about ice
cream. I worked on it a little bit more today, and here’s what I have written.
JP Licks is a chain of ice cream parlors in the Boston area,
including one not far from where our children and grandchildren live. The ice
cream is rich and creamy and there is a wide variety of flavors and toppings
from which to choose.
One of the continuing side effects of my treatment for a
brain tumor a year and a half ago is that many flavors do not taste as intense
as they used to. I do not know whether this is a result of the tumor or the treatment.
But, as a result, mint chocolate chip, my standard order at ice cream shops for
many years, tastes like plain vanilla to me now. So on our most recent visit to
JP Licks, I made a spur of the moment decision to try the peanut butter ice
cream. The peanut butter flavor was intense
and surprisingly tasty.
Can I learn something from ice cream flavors? Before my life
took changed so abruptly, I was blissfully happy with my family, my work, my
vegetarianism, even my ice cream flavor. I was not looking to change anything
except perhaps my weight. But life can take us in directions we had not
planned. While I continue to be pleased with my slimmed-down self, I can no
longer do all I would like for my family and I was forced to retire from a job
that I still very much enjoyed. So I cannot recommend cancer as a weight-loss
program, and although I have a new appreciation for many things, I believe that
I could have learned all of them in a less painful and challenging way for my
family. Nonetheless, as my daughter often says, “it is what it is.” I just need
to find that peanut butter ice cream in this new life.
I was intrigued by an
interview on the CBS Morning News with Hollye Jacobs, a woman who, following
her breast cancer diagnosis, started a blog to keep family and friends informed
of her progress. Ms. Jacobs has now written a book called The Silver Lining
based on that blog, which according to amazon.com is scheduled to be released
in March.
This is not a new idea. Many of you have kindly suggested I do the same. It is also another one of those things that I would never have given much notice if not for a whole cascade of events….the diagnosis, the radiation oncology resident (my husband’s student) who led us to Caring Bridge, the wonderful notes so many of you posted over those six months, and the frequent encouragement to continue the blog.
I did go to the web page and read a bit of her blog. The design, the links, the organization and structure are all quite impressive. But it has a perky optimism that I find somewhat annoying. Does it border on trivializing the disease and treatment? This is an issue with which I have struggled quite a bit. Without a doubt there are bad days, days when I am annoyed, disappointed, even angry, days when all I can think about is how much I miss my old life. Barry has discouraged me from committing those feelings to pen and paper (or in this case, to Word documents) to protect both of us from sliding too far into negativity, and I appreciate his wise counsel. But as I read some of Ms. Jacobs writing, I found myself being annoyed by that perkiness. It is all just too perfect. Anyone who has been through this knows that life is not really that way. It is a standard to which I cannot rise and perhaps should not even aspire.
For those of you not familiar with her, Christine
Lavin is a New York City-based singer-songwriter of contemporary folk music. I was reminded this
morning of an old Christine Lavin song, “What Was I Thinking?”
As you readers know, I am a big fan of The Allman Brothers Band. But since 1971 the band has only included one actual Allman brother, Gregg, because on October 29th of that year, Duane Allman was killed in a motorcycle accident. Early this morning, I was watching the local news on CBS and saw a commercial for Geico motorcycle insurance. The musical score was "Midnight Rider."
How can this be? Who would think that a company could use music composed by someone who was killed in a motorcycle accident to sell motorcycle insurance? Assuming that the Allman Family must have had some say in this, I cannot help but ask “what was Gregg thinking?” Is there no limit to the distasteful things people will do to make money? I am also attaching here an instrumental called "Little Martha." Listening to that definitely calmed me down.
I know this is of little consequence in a world filled with pain and suffering. But still….
We had a quiet Friday
night dinner and had dear friends over for lunch on Saturday, and they stayed
well into the afternoon. Over the past year, Barry and I have been playing
Rummikub on Sabbath afternoons, generally going for the best two out of three
games. Lately I have been winning the first two, but admittedly I have been
quite lucky in drawing at least one of the jokers. Yesterday Barry won the
first game, I won the second (I drew one joker), and then Sabbath was over so
we called it a draw.
This morning we
headed into The City to see “Enough Said,” the new movie starring Julia
Louis-Dreyfus and the late James Gandolfini. A.O. Scott of the New York Times
liked it, calling it “a small miracle of a movie,” and it received a 95%
approval rating on Rotten Tomatoes, but it was hard to know how much those were
influenced by Mr. Gandolfini’s sudden and untimely death at age 51 in June of
this year. I am glad to report that the reviews were well deserved. The two main characters are each divorced, and
each has an 18 year old daughter about to leave for college. They meet and
their humorous flirtation quickly leads them to fall for each other. But a rather-unlikely-in-real-life
complication (I do not wish to spoil the movie for those who might want to see
it) leads them to a break-up. The film does not insist on tying up the package
with a perfect little bow, so ends on a cautiously optimistic note. We both thoroughly
enjoyed it.
The movie left me
singing an old James Taylor song, “The Secret of Life,” which I will attach
here, along with the movie trailer.
We then went to Noi
Due for a mid-day meal. With all the holidays, we had not been there in a month
or so, so it was nice to be back.
I have a big week
coming up with my classes resuming this week. The students in the music class
had decided to study Beethoven this term. And I am returning to the memoir
writing class. I am hoping to put more effort into that this time around than I
was able to do last year.
