the power of one

girlfriends

the little engine that could

My blog is like a diet or health club membership. The longer I’m off it, the harder it is to get back on. I’ve had plenty of good ideas. I’m sure I have. I just don’t know what they are at the moment.

It’s been tough. I was two months out of treatment and still had days when exhaustion played the lead role. This wasn’t the “stayed up too late” tired. This was the “who stole my Chi” tired.

Three months out, no change. Four months out, and I realized I felt better during chemotherapy. That was a singular tell.

I was warned about the first year, that it was challenging. That it would take time to recover. There’s even a formula, for every month in treatment you need at least that much time to recoup. I was dismissive. I was different, more resilient. I exercised, ate well and went to acupuncture. This healthy trifecta should have made me a human superball; not only able to bounce back, but bounce back harder.

The only thing that was harder, was life, much harder than I imagined. Turns out I was different, but in a way no one would be envious. I couldn’t tolerate the drug that squelched roaming cancer cells by inhibiting my estrogen.

For months I’d naively pop the daily dose and by the end of the afternoon it felt like my muscles were being torn from my bone. Mornings I was an old engine. Sometimes I wouldn’t start. When I did start up, I was slow moving. Even up and running there was the threat of a breakdown. 

Was this my new normal? I was so far off my mark I didn’t rate a scorecard.

My doctors were sympathetic, but none jumped to conclusions. They suggested I wait another few months and see if things improved. I felt I waited long enough. I stopped taking Femara and for a couple of weeks, I joined the rebellious ranks of the non-compliant. With estrogen in my veins again, I had a joyful reunion with my former self. Enthusiastic, energetic, and able to stay awake past 8p.

The party lasted a couple of weeks, then duty-bound to live cancer-free, I moved on to a second drug designed to stifle estrogen. Aromasin promised solid results. With some luck, I would have fewer side effects. I was as lucky as an average lottery player and just as disappointed. Within a week, a veil of exhaustion descended on me, along with a full accompaniment of sweats and chills, sometimes up to 30 a day. Steady as a metronome, hot-cold-hot-cold a persistent beat of thermal extremes.

I’ve been on drug number three for a few months now and comparatively speaking, I am much better.

Seems the problem all along was my expectations.

I wanted to move fast. I wanted to catch up with everyone else and make up for lost time. I kept slamming on the pedal, but my engine refused to accelerate. It over heated and demanded adjustments, check-ups, tune-ups and attention.

Then I figured it out.

I’m a tempermental sports car, not a Hummer. 

Beep beep.

xoxo Momo

swimming lessons

    

I opened the door and life gushed in.

It took just a second and I was in over my head. 

So this is what the Hoover Dam feels.

Pressure. Constant pressure.

I try to remember the day I had the muscle tone to withstand the currents.

They say you never forget how to swim, or is it riding a bicycle that leaves its indelible mark?

Friends have called and emailed wondering if no news is good news, or if something is terribly wrong.

“gurgle” I reply.

I am getting use to the torrential flow and learning to live under water.

xoxo Momo 

 

 

the finish line

One more radiation treatment left. I feel like the last runner in a marathon. The sun has set, the crowds have gone, paper cups litter the street. My diehard friends cheer me on. Inches away, cars zoom past, like life. Fast and unaware. I drag one foot and place it in front of the other.

I’m bringing something celebratory to my last treatment as a show of thanks to the staff and to mark this anticlimatic ending. I thought about gift wrapping bottles of bar-b-q sauce. All the skin they treat could use a touch of marinade before baking.

They tell me I’ll get my energy back, in weeks or months. My skin will heal more rapidly.

Poisoned, cut and burned sums it up. Three cheers and 2.5mg of Femara every day now. I hope it works. I hope it all worked.

I have chosen to run, though more than likely, I will walk in a 5k fundraiser on September 23rd. It’s for a good cause; the elimination of breast cancer. Just five weeks away, I suspect I might stumble across that finish line as well. I have become less graceful.

The thought of putting myself out for there for a 5k race and not being able to raise a boatful of money is just too pitiful to consider. That said, please click on the link below (or to the right) and make a contribution. Beyond all the tax-deductible blah blah your support cheers me on and it has done so for the past nine months. Thank you.

RACE FOR THE CURE

Xoxo Momo

after coffee

I take Frannie to camp. There’s some haggling involved. No matter what time she goes to bed, she wants to sleep more.

And then, there’s the stretching. So much stretching. What’s with thoes long legs.

Breakfast is easy. Cheerios. There’s watching the gerbils, if we remember. Feeding them, if we remember. I unload the dishwasher and pack lunch. We manage to leave the house with a minimum of four bags. I carry all of them. 1) a napsack 2) a lunchbox 3) a bag of garbage to deposit on the way to the car 4) my combo napsack, pocketbook, canvas tote.

We drive to camp. She blows me a kiss, and waves goodbye.

I drive home and I park the car. It’s 9a and I walk 2 miles to my 9:30a radiation appointment at the BIDMC. I walk because my day may be busy and walking 4 miles roundtrip guarantees modest exercise for the day.

Approaching the building I pick up speed. 9:28am. There’s a Dunkin Donuts in the lobby which I pass. I am never tempted to stop. My first week I got lost, now I know which hallway to walk down and find the elevator easily. I press B for radiation oncology. There is something telling about treamtments that are reserved for the bowels of a building.

I scan in with my “blue card”. They’re very efficient this way. A flawless organization at work; moving people in and out all day with hardly a wait. Most days I’ll bypass changing into a robe or jonny. I have mastered the art of slipping my shirt on and off in a matter of seconds. It’s faster, and the less time in hospital attire the better.

One technician was pregant. I asked her if she had concerns working in radiation. She looked at me like I was an alien or an idiot. “There’s no radiation here”. Clearly she has confidence in the targeted beams and I suspect reasonable health insurance should anything be amiss.

Once on the table I lose myself in my ipod. I listen to something classical or latin. The meditation tapes I tried early on were too meditiative. I prefer music that can mask the drone of the buzzing machine each time another dosage hits me.

Every other day is a bolus day. I call it a bollucks day. The bolus is wet towel wrapped in saran wrap, placed on my chest. It functions as a conductor bringing maximum radiation to the skin. Other days the radiation just penetrates through me. The goal is even and consistent cooking. On non-bolus days my chest is bare. I would not have posted that picture.

By the end of my second week, I’m tired and the treated area feels hot, like a sunburn. My walk home takes a little longer.

I’d like to forget the cancer, but at the moment, it’s in my face Monday through Friday. The weekends are filled with better things, like the Hillsborough Ballon Festival.

xoxo Momo

radioactive

The machine dominated the room. It looked like a lifesaver. I’m not sure what it did. Welcome to The Radiation Oncology Treatment Planning Center. Ironically none of my treatments felt like life savers. On the contrary they felt toxic and dangerous. I was still battling chemo-induced neuropathy (numbness in my hands and feet) and shortly after surgery I went head to head with debilitating jaw pain (trigeminal neuralgia). If that weren’t enough, I was prepping for lethal doses of radiation. It’s all so counter intuitive.

Measurements were taken along with x-rays at various angles. Calculations were made. I never even attempted calculus so I hadn’t a clue. I tried to crack a joke. No one laughed. They mapped the treatment area on my chest and I was told to remain perfectly still with my arms in clamps above my head for close to an hour.

This seemed very much like the kind of thing they might try at Guantanamo until of course Amnesty International intervened. Where were the human rights activists when I needed them?

There were four men in white lab coats, all busy; adjusting an arm, making a mark, taking a measurement, taking an x-ray, consulting with each other. I lay on the table with my raw scar and my one lovely right breast exposed. I was the center of attention and invisible all at once. The precise treatment areas were permanently marked with purple tattoos the size of freckles around the area formerly known as my breast.

Target #1: My remaining lymph nodes near my collarbone for 28 treatments
Target #2: My left chest for 30 treatments
Target #3: My left chest, from the other direction for 30 treamtments

When planning was completed I was gracious and smiled at the doctors and technicians as if I had a dandy time. They smiled back and posed for the picture above. They even took the photo of me below. Everyone was very nice.

Two weeks later after the team crunched numbers and programmed their machines we had a full-blown dress rehearsal. I brought my ipod and pretended it was a musical. The following Monday was the real thing. Again I brought my ipod, and Frannies palm sized moo cow for good luck.

9:30am Monday thru Friday for 6 consecutive weeks. The parking is free and they’re brilliant about getting you in and out fast. Still, I tried to weasel out of this phase of treatment. My perky self was wilting.

I use more pictures now because I am speechless.

xoxo Momo

premiere week

I feel terrific. I figured I should move so I started walking, even pick-up a few light weights. Ten days later I had a follow-up appointment with my surgeon MJH. She reminded me that a mastectomy is major surgery. I forgot. She put an ace bandage around my torso. Like a string on an index finger. A reminder. I need to heal. The skin has to adhere to my ribs. Slow down.

Tell that to the twenty-two ziplock bags that were pinned to the wall in Ms Michal’s first grade class. Each had a wet paper towel along with a kidney bean and a sunflower seed. In less than a week, the beans and seeds sprouted, by the second week the stocks were wild.

My drains came out. Just a quick tug released rubber straws that suctioned excess liquids accumulating underneath my skin. When attached they siphoned off into two small plastic grenades which nestled in the pockets of a camisole made exclusively for this purpose. Even then, they got in the way. Under clothes it look goofy, like a gigantic fanny pack.

It was liberating to lose the entire apparatus.

The bandages came off next. Somehow I thought they’d stay on longer. Just five days. It hardly seemed like enough time for it to set.

Great pecs said the Clinical Nurse Specialist.

The things you can see with a breast out of the way.

I looked down and saw a small dent and then a long incision from my clavicle to my left armpit. Tight stitches, even raw they were smooth. Better than anything I could have done, even in the days when I embroidered flowers on blue jeans. I went home for a closer look.

The scar looked dangerous. Fabulous.

Time for my premiere.

I lifted my shirt for my sisters, then DD, then Marty. Anyone else willing to humor me could catch a glimpse. I had a black belt with none of the sparing.

I threw a bar-b-q for ten, in honor of a second premiere in one week. Confessions of a Matchmaker on A&E.

May 2005. Long before reality matchmaking shows were on anyone’s radar a colleague, Penny Benatovich showed me a pitch tape she produced about a tough talking Harley riding, matchmaker named Patti Novak. Patti called a spade a spade, and a guy overweight a fat guy who needed to lose weight. Together we pitched the concept to A&E. It takes a village to raise a child, and an army to produce a show.

A week and a day after my mastectomy the program aired, but I shouldn’t jump up and down. I just had major surgery.

In 1998 Melanie Perkins worked at Smash. She was a dedicated producer creating a powerful film about her friend, 10-year-old Andy Puglisi who disappeared 22 years earlier. For a period of time Smash provided funding for the film and was involved in pitching it to potential networks. We walked, but eventually HBO paid attention. “Have You Seen Andy” aired on Cinemax earlier this month.

Series premieres, documentaries broadcast, breasts removed and beans sprouting wildly. After I’ve healed I’m going to run in a 5k race to raise money for breast cancer eradication.

You can click here to make a pledge of any amount or register to join me on September 23rd.

There are more then 10 million Americans living with cancer today. Operative word, living. Good thing.

xoxo Momo

trip advisor

For traditional meds, there’s the BIDMC, conveniently located near Fenway Park and Boston’s Museum of Fine Arts. Free parking for chemotherapy treatments. Healing and heart, but you must know where to look. Avoid the cafeteria, and avoid any doctor who underestimates the power of nutrition, exercise and the role of humor and compassion in healing. Thank you MJH and Hester.

On the Trip Advisor scale, my mastectomy was a perfect 5.0

I started training early. I worked out with a personal trainer, a physical therapist, and saw an acupuncturist. To release tension I’d get a massage. To gain muscle mass I’d use weights. I even took Merengue lessons. I moved as often as I could and consumed generous amounts of fresh fruit and vegetables. Cancer treatments are challenging, not unlike an Iron Man or Triathalon.

The procedure I dreaded the most, turned out to be the least debilitating of them all.

I had braced myself for feeling wounded from such a visual casualty. I feared waking up to a different me. I expected pain and anguish. Instead, I felt calm and peaceful.

I pushed the button releasing the next dose of the morphine drip.

The recovery room looked a lot like the pre-op room. Maybe they were the same room. I expected everything to be different. I expected to feel miserable. I felt good. I expected anxiety. I felt relief. I expected some amount of sadness, and there was none of it.

Turns out I am not my left breast. I am something else. The mastectomy had been daunting. I was sure some critical part of me was embedded there, some part I couldn’t afford to lose. I was wrong. I can’t help but wonder what part of me removed would actually change me. Then I decided not to go there.

Eventually I braved a peek at the site of all the hoopla. My left side looked like a super model with a boo boo. I was bandaged, flat chested and boney. Just another new look for me to try on this year.

I spent the night in a private room, they brought in a cot for Marty. He was on standby, ready to help, ready to unplug the IV when I needed to dash to the bathroom. I had trouble keeping down watermelon, even water defied gravity. In between my perfect bullseyes in the sink, I woke up to enjoy how quiet it was in the room, to enjoy how utterly the same I felt, and to push the morphine drip just one more time before dawn.

The next morning, my head was a little cloudy the sky equally obstructed. All that grey made it easy for us to sleep in. I had the option of a second night. I considered it. It was so peaceful there in Riesman 1268. We read and napped. We brought in some food. The food stayed down. The afternoon was lazy like a late checkout at the W. We left after 3p. The service was great. Still, I’d take Marty by my side over a team of nurses on the floor.

Next stop radiation.

entering outrage

We’re all challenged; ears too large for our face, bellies too big for our backs, tender knees, overactive thyroids, and delicate hearts. Any number of afflictions befall us. They can be physical or psychological. I know people with both. They slow us down, they bring things to a halt.

Maybe yours causes bloating.

I integrate my disadvantages by disguising them as fashion statements.

“Fantastic haircut” I heard that recently in the ladies room

I‘ve been out, for business and for pleasure. It’s amazing what a snappy outfit, large earrings and lipstick will do.

“You look so chic” Perfect since I was dining at a Manhattan hot spot.

I have successfully concealed my cancer. My hair is growing. Everywhere. Not necessarily everywhere I want it. I seek out situations with good lighting.

My eyebrows were a surprise. Overnight a rush of charcoal punctuated my face. The reunion with my eyelashes followed. It was lovely.

I forgot I was sick. I started to plan. I planned to take a week off in mid-August. Seven easy days in Maine. Frannie would go to day camp and I’d make art with paper and pulp and images from my recent passage; bandages and bras.

I forgot about the mastectomy, I brushed off the radiation. I planned my fabulous summer. At some point I’d think about a bathing suit, or choose a T-shirt.

Then I received an email from my radiation oncologist and instead of a drive to the north shore, I boarded sonic transport to outrage. I didn’t expect to go there, I barely noticed the mileage. One moment I was at the computer, the next I was out of my mind uttering a language familiar when bleeped.

The mastectomy would mess with my bathing suits, but radiation would undo my vacation plans. Adding insult to injury, earlier in the week my oncologist was flummoxed. He wondered why was I seeing a physical therapist between surgeries. Gaining maximum mobility in my arm didn’t impact survival rates, so what was the point.

Outrage looks like every place else but it feels like fire and a rabid pit bull.

I am trying to live with my affliction. Then, some so and so reminds me that I can’t vacation as usual and worse some other suit with stethoscope seems to think reclaiming my range of motion is extreme.

I entered outrage earlier this week and have stayed here hissing. I can’t seem to find my way back to chill. I may go from outrage to mastectomy and remain in outrage. Since radiation follows, I might just spend the summer there.

While the bluefish are on a feeding frenzy, it may make sense to stay clear of my wake as well.

Short hair and a tough expression, it’s all the rage.

xoxo Momo