Wednesday, September 21, 2011

Basic Chronology

I am about two months into this mess.  I was struggling with abdominal pain (very unusual for me) in June and July, and finally decided to see my doctor (also very unusual for me). I drove back from the Poconos to NYC (via Philadelphia, where I dropped off my 92 year old mother) on Monday, July 18, and saw my doctor in the afternoon.  He suspected diverticulitis, and arranged for a CT scan that afternoon. Alas, the radiologist said no diverticulitis, but a large tumor on my left kidney.  I drove two hours back to the lake that night (denial, or wanting distance?)  My GP called early the next morning and said to come see him ASAP.  So I arranged for a cat sitter, packed my things, and headed back to the city.

My GP was quite direct: large tumor, definitely kidney cancer.  Frankly I hadn't even heard of this, and wondered if it was primary. He said that kidney cancers are not all that uncommon.  He said that I needed to have surgery very soon, and had already set up an appointment with a renal surgeon at Mt. Sinai.  He suggested that I could get another opinion, and recommended Sloan-Kettering (MSKCC) but that getting an appointment quickly was often challenging.

I called my brother, who lives in Annapolis.  He volunteered to come up to go with me to see the surgeon.  We saw the surgeon the next day.  A bit of an insurance SNAFU initially (no referral), but we both found the surgeon very good.  (He was even listed in NY Magazine's best doctors, for what that is worth.)   The news was not good: the scan not only showed a 11 cm tumor on the kidney, but other masses involving lymph nodes elsewhere, including one around the vena cava.  There was also some concern about the bladder. Fortunately a very unpleasant test showed the bladder to be ok.

The surgery was scheduled that day for July 26.  I called MSKCC and the earliest appointment I could get for an initial consultation with their surgeon was July 29.  I decided to stay with the Mt. Sinai folks.  My brother and older sister both came for the surgery.  The surgeon was able to remove the kidney and tumor, but not the lymph masses.  My sister stayed through the 5 day hospital stay, being am amazing advocate as needed, and stayed with me in my apartment for a week afterwards.  (Thanks.)

The surgery was modified laporascopic, which is supposed to be less invasive. But when they cut open your belly to remove a kidney, it is still pretty major. "Modified" because they have to enlarge the incision at the end to have enough room to remove to kidney.

First week home we interviewed oncologists.  Getting out of bed, into a cab, etc. was challenging, but my sister made it work.  We first saw an oncologist at Mt Sinai. I had seen him in the hospital, but for me at least that was a waste of time (and money) since I was out of it mentally.  He is very young, with a kind manner.  He suggested a combination of two chemotherapies, one conventional, the other targeted.  Mine is an unusual cell type: non-clear cell and sarcomatoid (which means aggressive).  He said that most kidney cancers are not responsive to conventional chemo, but there was some evidence that these types might be.  He proposed starting the following week.  

We had been making phone calls and talking to people, and several said that Robert Motzer at MSKCC is the top guy in this area.  We used some family connections to get an appointment with him a couple of days later.  This required a flurry of activity to get CT scans and tissue slides to MSKCC in time. The meeting with him was interesting.  We told him what the Mt. Sinai guy (a former student) was proposing, and he was dismissive on several points.  He doubts efficacy of conventional chemo, and said that it was not standard practice to start therapy sooner that one month post-surgery.  He argued that MSKCC resources, such as their expert pathologists, were going to be important for my situation. They had a new Phase II trial starting for advanced non-clear cell cancers, combining two targeted therapies, each separately approved for kidney cancer.  We were convinced, and signed up.  A schedule was established.  I would have some new scans (CT and MRI) and return for another consultation the following Thursday, with the chemo starting the following week.  

A friend (more thanks) drove me back to the lake after the scans.  A few days before my scheduled return to the city I got a call from my sister saying that Motzer's office had called, and they wanted me to start the treatments sooner (they had tried my home phone.) This was worrisome.  He had been pretty emphatic about waiting, so did this mean that the scans indicated things were getting worse quickly?  When I finally spoke to him he said no, they had simply reevaluated and decided that I was strong enough to start sooner, and that it was ok for that trial.  I am still a little dubious.

So treatment started five weeks ago.  Everolimus (aka RAD) pills daily, Avastin infusions  biweekly. The infusion is pretty quick, 20 minutes, with a few minutes of saline before and after.  The days of treatment tend, however, to be quite long.  The price you pay for seeing THE man in kidney cancer is that his waiting room is packed, and it is often a couple of hours wait.

The nurses and technicians are uniformly cheerful and efficient.  As a teaching facility, MSKCC has a number of doctors-in-training.  My friend who accompanies me (many thanks) observes that they are uniformly handsome. Most of the patients and most of the docs are men. (The Kimmel center treats Prostate and Urologic Cancers.) Having spent my professional career in a quite male dominated area, attending professional meetings where women were few, I seem to have landed with an illness that replicates this. I am not surrounded by pink ribbons.

Side effects so far are few.  I still have little stamina.  I try to walk daily.  At this point a 45 minute walk has me totally exhausted.  (But I remind myself that a month ago walking a short NYC block was a challenge).  I had some thumb and finger numbness, but that has mostly gone.  I have some soreness in my mouth, and a sore throat that has persisted for more than a week.  I am lucky that I could arrange not to teach this term, so I rest a lot.  I must take my blood pressure daily.  It has increased, so I now am on two BP meds (was on one BC - before cancer).  A good friend got a breast cancer diagnosis about the same time as mine, and her treatments, chemo and radiation, are much more severe.  My standard line is that the good news and bad news about kidney cancer is that radiation and conventional chemo don't work.  One envies the efficacy but not the unpleasantness.

My next scans are on early October, so in the meantime I continue to recover from surgery and wonder what is next.

Future blog issues:
Who and how to tell?
How much do I really want to know? 
Optimism vs. Realism?

3 comments:

Frances Preston said...

Sally - I really appreciate your openness and clarity ... and courage taking this on. Thinking of you always, Francie

Emma said...

Oh, Sally, I'm so sorry to learn of this. Your frankness and equanimity are impressive, though I can imagine how overwhelming this all must be. Sending you warm thoughts of calm and strength.
Love,
Emily

A friend said...

Ah the journey described clearly in words that we understand. I admire you for taking this suggestion of sharing. It may not halve the pain and fear but I think it helps you and it helps me. I feel connected and as Francie said, thinking of you and those raspberries we give to others.

Mitchell