Wednesday, August 3, 2011

Sucker punch

Yesterday was my meeting at Dana Farber Institute in Boston, MA. Aside from the cancer issues, there was another personal issue that raised tension and anxiety (and, sadly, I was right to be anxious, as it ended up with the 2nd worst case scenario I'd dreaded). I'd gone to Dana Farber hopeful for news and solutions, and that's how things seemed.

Fortunately, a friend came with me whom I respect and admire and, over the past couple of years, has shown a tremendous amount of support and consideration - she's an old friend's mother, and in many ways, reminds me of my grandmother thanks to her voice, her accent & European ways, etc. I arrived well ahead of schedule - traffic was much lighter than I'd expected - and despite a humid walk that, thanks to nerves and the weather, caused me to perspire, we arrived with ample time. We decided to sit and eat in the cafeteria, where I met a delightful little 4-year old who, in line with the cashier, thanked by compliment of her pretty, sparkly shoes with a BIG hug and said that I was a pretty, sparkly lady. (Dear lord, please say that she's not the cancer fighter - those angelic eyes, embracing arms and adorable face are undeserving of this hell!)

The first consultation was with Dr. Esther Rhei, the surgeon. I was blown away by her! She was so clear, assertive, confident, knowledgeable, patient and on-the-game. There was not a moment where I thought, "Hmm... " Everything she said and advised seemed so on the mark. She was respectful of what I wanted, but realistic about outcome. As I'd mentioned before, the biopsy on the masses below the left & right nipples was not performed because when we tried to find them via sonogram, the technicians at Stamford couldn't find them. Dr. Rhei, however, wasn't comfortable not having the biopsies done before the main surgery, as the pathology could change the surgical approach (mastectomy vs. lumpectomy, etc). She asked if I'd be willing to stick around after my second consultation for a quick sonogram to see if they could locate the masses (assumed to be papillomas), which I said was fine.

The second consultation was with a medical oncologist (aka the chemo & hormone doc), Dr. Jennifer Ligibel. To say her pedigree is impressive is an understatement, and she had some really interesting approaches, not only with chemo but with the hormone treatments, as we're dealing with an estrogen-reactive cancer. She also mentioned a clinical trial which I'd be an ideal candidate for. So far, I was hearing good things, and feeling like I was in really good hands.

My friend went to the waiting room while I went back for the sonogram, which shouldn't have taken too long.

The first technician came in and couldn't find anything on their side. He got another doctor, and they were able to successfully locate the mass in the left breast, but not the right. But something seemed odd, and they asked me to wait in the patient waiting room and not get dressed yet. I waited... and waited... and another technician came in and said that Dr. Rhei wanted to run another quick set of mammograms on the right side. I disrobed again, and the boob-squishing commenced (though not so painful as before). I went back to the waiting room and, a while later, the technician came in and said they wanted to do another mammogram, a little closer to the right nipple. Again, I stripped down, grabbed onto the machine, and got photographed again. A while later, they said I could get dressed, but not to leave, as Dr. Rhei wanted to speak to me and my friend before we left. By now, it was well after 5:00 - we'd been there for over 4 hours.

Dr. Rhei brought us to her office, sat me down on the couch, and got very serious. She explained that the mammograms taken yesterday revealed a "tail" of "calcifications" that went from the end of the crescent shaped lesion already identified that led from the confirmed cancer all the way to the sub-aereolar mass on the right side. She emphasized that even if that mass were just a benign papilloma, the trail of calcifications is "concerning" and, depending on the biopsy results, could determine surgical options, or lack there of. As far as she's concerned, there's no option but to perform biopsies on the left to see if that's cancerous and if the left breast is in play, now, as well as on the right to see if that mass is cancerous or not. My fear is given all of this, I'm likely looking at bi-lateral mastectomies. The cons are obvious (though it could mean nipple reconstruction - don't even ask at this point - it's so weird that I can't even grapple with the concept enough to discuss it. Yeah - it's just as weird as it sounds). The pros? New boobs, snatching fat and tissue from my gut and butt, no mandatory radiation and greater likelihood of being left with even boobs.

However, it wasn't exactly what I wanted to hear at the end of a day when I felt very sure of my path, my doctors, my treatment, and I felt confident in where things were going. Now, it was another body blow. I got another one in the cab ride home upon the return to my car, which just made things even worse. In a sense, though, I became so enraged and hurt on the way home that instead of dwelling on the news I just got (as I explained to my friend, my life is never a matter of choosing A or B, it's a matter of having to choose A, B, C and all degrees in between, and then someone throws a Z into the mix just for fun).

Regardless, I have been completely drained since my return from Boston. Physically, I still haven't woken up. Mentally, I'm just spinning. Emotionally, I'm just empty.

And, of course, Connecticare told me their Medical Director rejected the referral to Dana Farber saying I could get equivalent care within the network. Oh, yeah? I'd say a string 2-4" long of calcifications that were missed, etc kinda disproves that. So Dana Farber, thank goodness, is sending their findings, and their recommendations, which differs enough from the local recommendations and should provide enough basis to prove that, indeed, in my case, Dana Farber is the place to be. But, yet another battle to fight to suck the life out of me when I need it the most.

This is empowerment?

More curveballs, hoops to jump through, a sucker punch and being kicked by an old friend when this dog is already down.


  1. Praying for you, my friend. xoxoxoxoxo

  2. Fight on darling. My prayers are with you.

  3. I can't even imagine someone sucker punching you right now -- though I have definitely known a few people who liked to wait till someone was down before moving in for the kill. Keep on keeping on. You have a lot of love and support around you.

  4. In this day and age, every patient has to fight for their rights, for themselves, and to be an advocate for their own health. Keep Strong!


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