Winner Winner Chicken Dinner

"Begin at the beginning...and go on till you come to the end: then stop."
                                                                 --Lewis Carroll, Alice In Wonderland

And so, on to the final chapter of the story.  Well, I am hoping this will be the final chapter.

BEFORE

My pre-surgery appointment was scheduled for Wednesday, May 27 at 10 AM. Kia Prescott, Dr. Muto’s Physician Assistant, went over the particulars: this would be a complete hysterectomy, removing the uterus, fallopian tubes and ovaries. (By now I had given up on my crusade to retain my ovaries. Dr. Muto had reasoned that at this point in my life, my ovaries excrete nothing. Zilch. Nada. Zero. “If you were 39 years old, there would be a reason to debate this. But not at 63.”) Kia’s main focus was the aftermath of the operation. “You’re going to be tired for at least 6 weeks. Listen to what your body is telling you. Don’t lift anything heavy. Rest. Take naps. You will not be able to run around because you will hit the wall and come to a crashing halt. And when I say hit the wall, I mean you’ll have no reserves.” She delivered all of this forthrightly and cheerfully, patiently enduring my repeated assertions about being as strong as an ox. I bounce back from everything in record time, I insisted. “You’ll see, you’re going to be a hot mess,” she smiled sweetly.

This was followed by a brief conversation with the anesthesiologist. I repeated what I always say when meeting an anesthesiologist, “No ketamine.” The doctor assured me that ketamine was no longer used on human beings. (“It’s only been used on horses for years!”) But on the subject of ketamine, my motto is Better Safe Than Sorry. I’d experienced it 30 years ago when New York Hospital reset my broken nose, and life became an endless screening of the Sorcerer’s Apprentice for the next several months.  

Ketamine's aftermath

With the anesthesiologist’s guarantee that ketamine was off the table, and armed with instructions to call and confirm my surgery appointment for noon the next day, we went to Boston’s Museum of Fine Arts to spend the afternoon. 

 

John Singer Sargent paints sparkling white linen like no one else in this world.

zzzzZZZZZZZZ

I called to confirm the surgery and was informed the surgery had been moved up to 9:30 AM. I was to be at the hospital by 8:15 to be prepped. Even better! Less time to wait around Thursday, tapping my little feet in anticipation. I am not especially nervous about impending surgery. I have absolute confidence the doctor will do a fine job. But being as driven as I am, I’m always impatient to get the show on the road. Peter equates this perpetual impatience with my ambient sound—the high-pitched zzzZZzz of a chainsaw being fired up.

Prepping for surgery is a little like watching your life pass before your eyes. Only in this case, it’s not your life's story crossing your field of vision, but an entire surgical team that comes through, introducing itself one by one, asking if you know why you’re here, what kind of surgery you’re expecting to have done, and if any of your teeth are loose. (Again with the teeth?!) One member of the team was a standout—Dominick, the anesthesiologist nurse. I wish I’d asked his last name, because he was wonderful. Dominick took the time to explain every move that would take place once I was in the operating room, walking me through everything I would observe before falling asleep. This was obviously done for the benefit of nervous patients, and it was the absolutely perfect touch. The explanation included everything from how I would be moved from the gurney to the operating table, to the moment when he would cease speaking to me and turn to the surgical team to give them a status update.

The last thing I recall before the lights went out was Dominick patting my shoulder, assuring me that he would take good care of me, and promising me that I wouldn’t wake up during the surgery. It hadn’t even occurred to me that this could happen. Hmmm, now that's a

Now that's a party hat.

nightmare worth contemplating.  (Best pre-op line, uttered by Dominick as he handed me a paper surgical cap: Let’s give you a party hat!) 

AFTER

I awoke to Peter’s and my brother, Steve’s smiling faces. The recovery room was bustling beyond my pleasant haze of drugs. I was offered vanilla pudding in a tiny dixie cup. I ate it with drug-sodden gusto and was reduced to a gaga bleating of Oliver Twist’s, May I have some more, please? For the time being, the usual zzZZZZZ had been reduced to hmmmmmm.

Steve, had come up from New York to be with me. Over the years, Steve and I have made it a practice to sit with and for each other during surgeries. Steve kept me company while Peter underwent back surgeries. I sat with him while his wife, Susan, had surgery. We’ve never discussed why or how this tradition came to be. As children, Steve and I fought endlessly. (I used to say that my brother never spoke a civil word to me until I went off to college.) In a quiet moment my mother took me aside and told me we shouldn’t fight because someday she and my father would be gone, and Steve and I would have only each other. 

Steve Doloff

She spoke from her own experience of having lost her mother and finding her greatest comfort in her brother and sisters. And so it is with Steve and me. It’s always an immeasurable comfort having him with me.  

Somehow I got dressed. Peter must have made that happen. I was still so gaga that I could easily have pulled my panties on over my yoga pants and thought I was ready to go dancing. I was poured into a wheelchair and rolled out of the hospital. Although our hotel was two blocks from the hospital, Peter brought the car around to pick me up. Steve stood beside me holding my hand, while I sat in the wheelchair, blissed out, dreamy and secure in my brother’s company and care.  

The hospital sent me home with scrip’s for big honkin’ bottles of 600 mg Ibuprofen and OxyCodone. The amount and magnitude of the medications seemed vastly out of line with the minor discomfort I was experiencing. True, urinating did sting for the next day or so, and I did feel like my bladder had been neatly folded in quarters, and then unfolded and refolded a few more times. (Having your hooha clamped wide open for almost two hours and your organs moved around like chops on a grill will have that effect.) But over-the-counter Advil would have done the trick.

AFTER AFTER

Life is an elaborate and endless to-do list, and I plan my own life with bullet-points, indented sections and subsections. But the list was put aside for the next several weeks. I slept a great deal, I ate a very little, and somehow the time passed hazily, pleasantly and uneventfully. The mild soreness passed, the fatigue that Kia predicted did overcome me in many small ways over many late spring afternoons. Amazingly, I was smart enough not to over-exert myself, so I never did live out her prediction of becoming a hot mess. The lethargy was so pleasant, in fact, that I wondered if I would ever get beyond it. I missed the habitual zzzzzzzzz in my head, and asked myself, What happens if it doesn't come back, and I'm stuck in hmmmmm for the rest of my life? I needn't have worried. It came back with a vengeance (albeit, in fits and starts), and I am happily making and checking off long to-do lists again.

The pathology report was a howling success. The cancer was confirmed to be early, slow growing, and making only minor inroads into the muscle. Even better, the genetic testing showed no inherent predisposition to the cancer. As Dr. Muto termed it, This was just a lightning strike.

A fluke. It was completely contained and had been cleanly removed. The cure rate for this kind of cancer is 90%. But there are no guarantees.

And so we move forward. I dodged a bullet this time, and am immensely grateful and relieved to have done so. But my blithe certainty of many healthy years ahead is rightfully shaken. And the fragility of life and its tender connections to beloved husbands, brothers, friends and memories are spread out before me plainly, just as they were when my mother and father died.

This Is Your Uterus

I'm sorry to say
but sadly, it's true
that Bang-ups
and Hang-ups
can happen to you.
                         -----Dr Seuss

The first meeting with the Dana Farber Cancer Institute and Dr. Muto went well. I mention Dana Farber because I’ve found that it will be a fully realized presence and personality in this narrative.

While I am not a connoisseur of all things hospital, I have dealt with enough medical facilities--on my parents’, Peter’s and my own behalf—to recognize them as living, breathing entities with distinct personalities. New York Hospital (now New York Presbyterian) is huge and impersonal. The magnificent machine grinds irrevocably forward for its own inscrutable purposes, processing patients at its own pace and with its own—and only its own—convenience in mind. In stark and happy contrast is Overlook Hospital in Summit, NJ, which has adopted patient-centered model of care. Their processes are designed to make patients welcome and comfortable. Compassionate care and a good-natured common sense typify Overlook’s patient treatment model. And then there’s Dana Farber—it’s the Overlook model ramped up, souped up and super-charged by high-end high tech. The staff contact you when they say they will, scheduled appointments are on time, the staff is eager to help and ceaselessly cheerful. The gadgetry is fabulous (you're given a GPS while you're on the premises so they can locate you), the place chimes with good vibes, a motivated staff and doctors who seem genuinely interested in you rather than their jam-packed schedule.

But enough about them, for now. Let’s talk about me. Right now, it’s all about me. I’m trying to stay out of the swamp, but I am in a foggy place where I knit ferociously, play solitaire mindlessly and endlessly, and remember nothing effectively. Friends around me are having all sorts of surgery, and I find myself shame-faced and embarrassed about remembering their life changing events only when reminded.

I know, the moving lips are a little creepy....

We’ll see if this get’s better or worse as my little drama makes its way towards its inevitable conclusion.  That's not being morbid. It’s neutrally fatalistic: what will be will be. And what will be may not be bad at all. I just have to wait and see. But, oy, the waiting is starting to wear on me.

So let me get to the details you’ve all been waiting for. Dr. Michael Muto looks like a taller, thinner version of John Hodgman. He was calm, reassuring, and apologized for not having his usual posse of assistants in tow. His minions were elsewhere attending computer training to bring them up-to-speed on the newest version of an already state-of-the-art system. Since I was quite happy with the level of intelligent attention and care I’d received thus far, I am still trying to imagine what other services the posse provides. Fresh omelets? What he did have was a third year Harvard medical student (John) who listened with rapt attention to every word that fell from the doctor's lips.

In a nutshell, I have a very slow growing form of cancer, and happily, I discovered it very, very early. Dr. Muto took a piece of paper, drew a uterus and proceeded to describe who, what, where and how.

The ovary on the left has just realized what's coming her way.

To paraphrase Dr. Muto, the uterus is simply a big muscle whose sole purpose is to push out babies. “Think of it as a thick slab of steak,” he suggested. There are several possible scenarios for the cancer. It could still be on the very surface of the organ’s lining, or it might have starting growing into the muscle, with its severity being judged by how far the cancer has penetrated. It’s also conceivable the cancer could have migrated into the fallopian tubes and/or the ovaries. But it’s all speculation until the uterus and ovaries have been removed for examination and pathology tests.

This will be a laparoscopic hysterectomy, with four tiny incisions in the abdomen through which the blood vessels to the fallopian tubes, ovaries and uterus are severed and cauterized. An incision is made inside the vagina to separate the uterus, and the organ is removed intact through the vagina. (By the way, I am sparing you some graphic pix that would have put you off your feed for several weeks.) The lovely little thing is handed over (literally, it seems) to the pathologist for immediate examination and an initial appraisal. Dr. Muto referred to this as being done in ‘real time’: the patient is still anesthetized on the table while the pathologist reads the tea leaves. Any further exploration into suspect lymph nodes or surrounding organs is determined by the pathologist’s first read. If all appears reasonably clear, the surgery is concluded, and the final pathology results are ready in a week. 

I have absolutely no concerns about the surgery. To paraphrase Mick Jagger, hysterectomies are like babies--they happen every day. It’s the pathology results that are the clincher. And the seeming unpredictability of the pathology findings reminds me of a lottery ticket: you’re either a winner or you’re not.




But back to the meeting with the doctor. He finally paused and asked if I had any questions for him. Dr. Muto turned to young John and to tell him that the explanation so far should have anticipated most—and optimally, all—of my questions. And amazingly, it had. I skimmed my list, realizing that he had covered everything. Then, explaining that he was about to use this as a teaching moment, he asked John to guess how much of his explanation the average patient might be expected to retain. Always the first kid in the class with her hand up, I volunteered, “40%! I think I got about 40% of what you said. But every time you said the word cancer, I think my pupils dilated and then I blanked out for a few seconds.”

Gesturing in Peter’s and my direction, “See them? They’re educated and they came prepared. The average patient gets between 10 and 30%.”

Well, prepared or not, we are moving forward, with the surgery scheduled for Thursday, May 28. Here's hoping for sufficient serenity to see me through 'til Thursday, and then a winning lottery ticket.

Just a Touch of Cancer

These last few weeks of holding on
The days are dull, the nights are long
Guess it's better to say
Goodbye to you
Goodbye to you
Goodbye to you
Goodbye to you
Goodbye baby
So long darling
Goodbye to you

Goodbye To You--written by Smith, Zachary Holt

I am about to say a tearful farewell to my uterus. There's no graceful way to ease into this, so I might as well jump right in. I have a touch of cancer. Just a touch. Not much. Let’s call it cancer lite. It’s called Endometrial AdenoCarcinoma Grade I. (The capitalization is mine—out of respect for the sheer terror the words arouse.)

Let me warn you now: if you are squeamish about lady parts, their related discharges, fluids and generally messy information, then stop reading here. I’ll get back to you.

This latest rich life experience started in early March when I found some light bloody staining in my panties. Who ever liked finding a bloody stain in her panties? Aside from ending the monthly PMS (the bloating, the wide and wild mood swings and the raging temper) it used to mean the onset of cramps and bleeding. Real bleeding. You know, the gushing, clotty kind of bleeding. Ah, that wonderful phenomenon—the monthly signal that you aren’t pregnant. Remember how relieved we used to be to find that we weren’t pregnant? Remember lengthy discussions about boyfriends and birth control? Over time, those early topics gave way to discussions of birth control and husbands, and even later to fibroids and menopause. But those days are gone. So this latest appearance of an old friend could not be a good thing. The staining lasted for about 6 hours ending as suddenly as it had begun. I thought about it for a few hours more and decided to take the grown-up course of consulting a gynecologist.

We were in Florida when this happened. But my medical plan is based in Maine, with a tenuous trellis of network connections across the US and an annual deductible and maximum out-of-pocket that would trouble Sheldon Adelson. I found a participating gyno in Port St Lucie who had gone to medical school at Emery. (I was having no truck with doctors whose degrees came from Alabama State or medical schools located on islands better known as vacation destinations than centers of medical research.)

Friday, March 13

The gyno, Dr. Robert Paré, was easy to talk to and willing to answer questions—no matter how repetitive or stupid. I like that in a doctor. He did an initial pelvic examination and found nothing exciting. (Lying there with my feet in the stirrups, I prompted the doctor with a little

uterine humor, “Let me know if you come across Jimmy Hoffa.” He’s not from New Jersey and didn’t get the reference, much less the joke.) I’d had a pap smear in summer 2014, with no remarkable results, so he suggested a biopsy of the uncharted land beyond the cervical trap door. Never having borne children, I still have the cervix of a child. The doctor thought a femoral block might make the insertion of a pipette bearable—or not. I might end up clinging to the ceiling by my fingernails… He suggested we start with a trans-vaginal sonogram to see if we could find Waldo.

Monday, March 23

The trans-vaginal sonogram revealed nothing very exciting either. The ovaries appeared normal but there was some ‘congestion’ in the uterus. The doctor recommended a D&C—that ever-ready solution to any uncertainty about your uterus. If in doubt, scrape it out.

Thursday, April 16

So I found myself in a surgi-center on Route I in Port St Lucie, Florida. This was hardly the epicenter of medical excellence on the East Coast, but it would do nicely for a mundane procedure. I underwent the usual surgical prep with an inadequate surgical gown, rubber soled socks, a little paper shower cap to cover my hair and an IV line insertion. These preparations were accompanied by repeated questions such as, “What are you having done today?” and my personal favorite, “Do you have any loose or rotting teeth that might fall out?” WTF is that about?, I wondered.

I answered civilly the first two or three times. By the fourth inquiry into the state of my teeth, I assured them that none of my teeth were rotten, none were removable, and none were likely to fall out of my mouth any time soon. So let’s give it a rest already. The staff smiled politely and dropped the subject.

The D&C went smoothly. I sailed through it, thrilled by the prospect of the best kind of nap to follow the procedure: drugged sleep. Better living through chemistry is my motto. The doctor promised lab results within 4-5 days. He told Peter everything looked fine. He’d removed one benign polyp and had found nothing else, so the pathology test should be nothing more than a formality. But as we all know, Should be and are can be two entirely different things.

Tuesday, April 21

The doctor called to tell me that—to his own amazement—the pathologist found some squamous cells in the D&C tissue sample. Just a few. There’s no mass, there’s no tumor. This is in the very early stages and very slow growing. This is the best kind of cancer to have. (Now that’s a fascinating statement, if ever there was one.) “You’ll have a complete hysterectomy, and you’ll be fine.” 

At least I think that’s what he said, but it’s hard to know for sure with that tornado siren wailing in my head. My first response was, “The ovaries too? I am inordinately attached to my ovaries. Do they really have to go?” 

I am always astonished at the absolute ease with which male gynecologists are willing to jettison women’s ovaries. If we were discussing doing away with their testicles, there would be the equivalent of Supreme Court arguments mounted to debate the ethical and medical pro’s and con’s. 

But ovaries? Those are expendable. The doctor was cheerfully assertive, “Oh, yes, of course. Everything goes.” I muttered something to the effect that we would be talking further about that particular point, and suddenly realized that I was utterly breathless—as if I had been running a race. I finally gathered my wits sufficiently to ask what I needed to do next, and he told me that his office would contact me to set up an appointment.

Well, I knew I wasn’t about to have anything more done in Florida. If I really had cancer I was heading to either New York’s Sloan Kettering Hospital or to Boston’s Dana Farber Cancer Institute. All those years of corporate discipline and logical thinking may have paid off. I evaluated who among my friends and loved ones would have a clear head and useful information regarding a choice of doctors. A good and sensible friend, Dr. Susan Black, came to mind. (More about Susan in another blog, I promise.) Susan named Dr. Michael Muto at Dana Farber. I checked my medical plan, found him to be a participating physician, and kicked the machine into gear to make an appointment with him.

My first appointment with Dr, Muto is scheduled for Tuesday, May 19.

Am I freaked out? Yes and no. If I sound nonchalant about the coming storm, it's because I'm in a golden barge floating serenely down my very favorite river--denial. As long as I can go to the gym and run my flabby little ass off, what could possibly be wrong? But reality will set in on Tuesday. Stay tuned for more. After all, if it’s not one thing, it's another.