My Story Part IV: Time Flies When You Have Cancer

When in doubt, tell the truth. – Mark Twain

After a couple of hours, it was setting in that I really had cancer. While I can keep secrets that could ruin surprises for friends, I’ve never been very good at keeping secrets about myself. I’ve always been an open book. I have friends who have found that trait to be very off-putting, but the fact is that’s how I am. I wear my heart on my sleeve.

As a LIVESTRONG Leader, it’s been drilled into my head that cancer is nothing to be ashamed of – there should be no stigma attached. I’ve been open about so many things in my blog, and I felt that this should be no different. So I wasn’t. I wrote a blog about it. I passed it onto a friend at LIVESTRONG Headquarters who asked me if she could share it with the staff and others. I agreed. And it was shared. Now, it was out there. If I went into denial, there’d be others to remind me. And my obligation of the cured was starting early. I was going to share my story. I was going to make this real, not wrapped up in a pink ribbon with glamorous photos. I’d tell it like it is.

Within hours, I’d received dozens of Facebook messages, Tweets, emails and other notes of support from friends all over the world. And, within those same hours, I was being scheduled for test after test. My calendar was out of control. I had just started a new part-time job working for Danny’s Cycles, I had my full-time job, I was just starting up my Mary Kay business again, and now I have doctor’s appointments, scans, consultations, more doctors than I ever anticipated knowing in a lifetime. And I still hadn’t told my parents and my children.

Yes, I know. How selfishly stupid was I for not telling my parents and children before blogging about it? But, you see, neither they, nor their contacts, read my blog or follow But, I had to do it. At least, I knew I had to tell my children. I didn’t want to tell my parents. It’s the ugly truth, but the fact is that I didn’t want to deal with their insanity, specifically, my mother’s. Flashes of when I was delivering my daughter, and her criticism that I’d chosen to have an epidural, and the fact that she denied my request to bring my son back in time to cut the umbilical cord kept running through my head. The reality was that she would drive me insane with judgements and her opinions of what my choices were, and I didn’t want to deal with it. I asked my cousin to tell them, but she chose not to do it.

So, I picked up the phone and told my dad, who told my mother. And then I arranged dinner with the kids at DiNardo’s Ristorante in Pound Ridge, NY.

Tell the children the truth. – Bob Marley

At an early age, it became painfully obvious that adults had a despicable knack for hiding the truth, especially the uglier truth, from children to “protect” them. What those adults don’t understand is that such consipiracy hurts the children, sometimes scarring them for life, and has less to do with the well-being of the children, but avoiding having to figure out how to explain difficult things. It’s to placate the adults, not benefit the children. My grandmother died in 1980. I was to be at the funeral, with my cousin, so we could say goodbye to her. She had fought cancer, and her time ran out. She was the most revered adult I had in my life. She was everything to me. I distrusted other adults as it was, and, at her funeral, that distrust was confirmed. Someone outside the family decided that it was inappropriate for my cousin and me to be at the service, so she tricked us into going to a classroom upstairs in the facility and locked us in for the duration of the funeral. Our parents didn’t realize this had happened, and no one came to get us until after the service was over. We missed everything. We never got the chance to grieve, to see her casket, to share our loss, etc. We missed it all. And neither of us have gotten past that.

I wasn’t going to lock my children in a closet. I wasn’t going to do to them what was done to me.

The good news is, as I’d been a LIVESTRONG Leader for a couple of years, they had plenty of exposure to what cancer is, survivorship, etc. My son had gone to the LIVESTRONG Challenge in Austin the year before, so he’d seen, hands on, how many make it through the other side. I just had to convince them that I’d be one of the many collecting the yellow rose with the “I Am a Survivor” bib on my back, and they wouldn’t have to wear the bibs that read, “In Memory Of.”

Once dinner was ordered, we all sat down, and I told the kids that I’d been diagnosed with breast cancer. My son asked me if I was ok. My daughter’s eyes began to well up with tears and she hugged my right arm and pressed her face under my arm. I stroked her cheek and told her it was found really early and not to be worry. I told her that I was a little scared, but I was stronger than I was afraid. My son came over and hugged his sister and told her it would be ok. We described all the riders and runners we’d watched collecting their yellow roses as they crossed the LIVESTRONG Challenge finish lines, that this was caught early, and it would be alright.

I reminded her of the Arthur episode that the Lance Armstrong Foundation did called “The Great MacGrady,” (search for The Great MacGrady in the search box on PBS Kids to watch the episode online) where cancer was described as a weed in a flower garden that needed to be plucked out, and sometimes you had to use weed killer to make sure it never comes back. I told her that in October, when we went to Austin, she’d see hundreds of cancer survivors and that I’d be joining them. I explained to both kids that I’d be having the surgery while they were at camp, but that I’d let the camp know all about it and make sure that if they needed to call to make sure that I was ok, they could. (Note: The camp didn’t exactly comply – I had to fight them to let that happen, as well as other issues related to the cancer that I should not have had to explain more than once, let alone fight repeatedly.)

By the end of the evening, though I can’t say we were “alright,” the information was given, it was being processed, and it was clear we were fighting this battle as a family. My son was going to be “Man of the House” and agreed to keep his nose clean and do what he had to do. My daughter was going to be my “Lady in Waiting,” and pitch in where she could, and I was going to fight like hell.

Look for me in the whirlwind or the storm. – Marcus Garvey

It’s remarkable how much stuff has to get done in such little time when your diagnosis comes in. My thumbs could not keep up with all of the appointments I had to make. I had to meet with a breast surgeon. I had to go to radiology. I had to get an MRI. I had to get my family to give me the family cancer history once more. Sure enough, there was a pattern on my father’s side, which meant I had to meet with the geneticist. I had to meet with an oncologist. I had to solve the conflict in the Middle East. All in, what seemed to be, a matter of days. At the same time, I was trying to make sure that I was seeing the best practitioners that I could. And that insurance would cover it. And, oh yes, try and work.

The following 2 weeks were filled with scans, tests, running all over the Stamford area from the Tully Health Center to the Stamford Hospital to the Darien Tully Center.

A quick detour about that trip. If there is one thing that I have taken away from my involvement with LIVESTRONG it is to fight like it’s nobody’s business (because it’s not) when it comes to getting what you need. You know your body better than anyone and it’s your cancer, not theirs. Even the best health professionals miss things and you, and only you, know when something is “off.” They may be able to figure out what it is, but unless you are a clinical hypochondriac, follow your instincts when something doesn’t feel right or the doctor is really not in the right. I keep kosher, which means that I don’t eat shellfish. That being said, the one time that I accidentally ate a dish with shrimp in it, and it was the entire bowl and the shrimp wasn’t revealed until the very end, I had an allergic reaction. It wasn’t lethal, but was uncomfortable. My lips and my throat swelled. Not to the point that I was in respiratory distress, but clearly, I needed to avoid shellfish. However, I’d had several MRIs using the standard dyes. As a precaution, however, my doctor decided to prescribe me steroids.

Now, I already take steroids for my under-performing adrenal system. So these are additional steroids. CVS on High Ridge Road in Stamford, gawd bless ’em, has screwed up every single prescription I’ve ever called into them. This was no exception. The instructions given to me did not match what was in the bottle. however, this wasn’t discovered until I showed up for the MRI. So I had taken less of this prescribed steroid than desired, however, I was still taken steroids additionally. Not to mention the fact that I’d never had an issue with the MRI dyes before. They told me it shouldn’t be an issue, and I went to the back to change. Bear in mind, that I has taken enough steroids to be in “‘Roid Rage State.”

As soon as I was ready for my MRI, I was told my a nurse that the radiologist decided that since I hadn’t taken the steroids as prescribed (inferring that I had done something wrong), that they wouldn’t do my MRI that day. Here’s the problem: Tests like the MRI are just a domino in the scheme of things. When one test doesn’t get done, then the rest of the dominoes fall and you have to start all over again. I had pending appointments out of state with experts, I had a string of follow up appointments, and a deadline by which the surgery could happen before the kids came home. This was not acceptable and I asked to speak to the radiologist. I offered to sign waivers. I pointed to my past records of MRIs with no problems. The nurse told me the radiologist would come out to speak to me. I got on the phone with the Nurse Navigator, my Primary Care Physician, my OB/Gyn, telling them what was happening and to get the radiologist on board. The nurse returned, and I was in full out rage state. She said that the radiologist left. At which point I blew my gasket. I mean, I lost it and I started screaming at the nurse to get this done, turn her back around, etc. I asked where the radiologist was going, and she made the mistake of telling me, “Stamford Hospital.” I said, “Thank you,” got changed and into my car and high-tailed it down I-95 (miracle I didn’t get pulled over!) and parked at the hospital.

Fortunately, my aunt had been a Lab Supervisor at the hospital for years, so I know my way around the bottom floors and backways of Stamford Hospital pretty well. As I was sure the Darien Tully staff had alerted Stamford Hospital that a roided up lunatic was en route and to expect a large, pumped up green lady with shredded clothing to charge through the halls, I decided to take every backway that I knew down to the basement level without being seen by security. It worked. A little patience and a smile, and I was inside, past the security doors. Wouldn’t you know, the first door I stumbled upon was the Head of Radiology’s office.

I charged in, smiled, as the gentleman was on the phone. He looked up, nodded at me, and indicated that I should have a seat. As he was on the phone, he looked at me up and down, nodded again, and said, “I’ve got it.” Yes, indeed, Darien had alerted Stamford about me. He got off the phone and asked, “How can I help you?” As calmly as I could, I explained what happened, and that the test had to happen today because several key appointments were contingent on the MRI results being turned over within 24 hours. I explained that I know my body, what I can and cannot tolerate, and that it was completely unprofessional and wrong for the radiologist to hide behind her nurses and not speak with me directly. He nodded his head in agreement and said, “Let me see what I can do,” and he left the office telling me to stay put. I was 100% certain that the men with the butterfly nets were on their way.

Instead, his assistant, who looks a little scared, comes in and explains that the doctor has run out to the parking lot to physically stop the top breast radiologist from leaving to come back and to perform the MRI at the Tully Center in Stamford. She asked me to hold tight, breath, and relax. She understood, as did her boss. Sure enough, the doctor returns and tells me to head over to the Tully Center for the MRI. And that’s how I got the MRI done.

Thanks goodness, the rest of the tests did not require such drastic means. In fact, though they were crammed into the few hours of the day like sardines, the tests went on as planned. Except for one…

I’m Living Strong.

When my oncologist, Dr. Isadore Tepler, told me that my Oncotype test indicated that I scored a 21, my heart sunk… The good news was that the Taxotere-Cytoxen combination meant very few side effects. In fact, there was only one guaranteed side effect: Absolute hair loss. Complete baldness. I’d be a hairless, 2-legged, tail-less cat.

I took things into my own hands this weekend at the LIVESTRONG Challenge in Austin, TX. Breast cancer may have taken my breasts, but it’s not taking my hair.

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Chemo Day 20: Fatigue & Morning of Gilad Shalit’s Release

Is it the wrangling of the little uns? Having run in the 5k? The pitiful attempt at riding Sunday? Or the chemo? Who knows, but I am BEAT.

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Chemo Day 19: Wrapped up with a pretty bow

Wrapping up the LIVESTRONG Challenge Weekend…
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Reflections on Survivor Stories: Geri Moran, Arnold Roufa & Ted Brown

When you make it to the “other side,” you feel the need to grab as many others’ hands as you can who are also fighting the disease and take them with you.

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Survivor Story: Arnold Roufa of Nyack

Peter D. Kramer wrote this inspiring profile of Arnold Roufa for the Sunday Life section of Oct. 9, 2011:

If you’ve been to Nyack recently, you’ve likely seen Arnold Rou­fa’s panoramic photo of the village adorning the “Welcome to Nyack” banner.

The retired ob/gyn — who goes by the name “Roufa,” not Dr. Roufa or Arnold Roufa — has had three wives and three lives, one of them touched deeply by breast cancer.

First, he was married with children. That marriage ended in divorce.

Then came his marriage to Myrna March, a R&B-pop singer-songwriter whose talent still causes him to speak in hushed tones. For 22 of their 24 years of marriage, March battled cancer, in one breast, then the other, succumbing to lung cancer in 1998.

The next year, Roufa married Arlene Levine, his high-school sweetheart from New Orleans. They live on the Hudson in Nyack, where he pursues a passion that drives his third life: photography.

Here’s the wrinkle, though: In that middle life, 20 years ago — as he watched March battle cancer, Roufa himself was diagnosed with breast cancer, a diagnosis that is extremely rare in men. Fewer than 1 percent of breast-cancer cases each year are in men.

By the time of his 1991 surgery — on stage 1 cancer in his right breast — Roufa had lived with March’s cancer for 17 years.

His surgeon found the cancer after operating on Roufa for gynecomastia, a painful swelling of his breasts that was a side effect of ulcer medication he was taking. The surgery was on a Friday. The following Monday, the surgeon asked Roufa to come to the office.

“I’ll never forget that day,” he recalls. “It was horrible. He told me I had cancer. I was not thinking cancer, although I had been living cancer since 1974 with my wife. It hit me.”

As a gynecologist, Roufa had examined thousands of women, urging his patients to be proactive about breast cancer.

Doctor became patient. He had his right breast removed and chemotherapy.

Being a man with a disease that primarily affects women didn’t affect his ego.

“Men have breasts,” Rou­fa says.

What took its toll was watching March endure years of doctors, diagnoses and more doctors.

There were dark times.

“As Myrna was going through more things, I would take her tranquilizers. I would take my tranquilizers and sneak liquor. To me, it killed the pain. But it didn’t kill the pain of what she was going through.”

There were also laugh-out-loud times.

After her first mastectomy, March insisted on going to a hospital affair, wearing a prosthesis. When a brash man at the bar complimented her breasts, “she took out her prosthesis and threw it at him,” Roufa says with a laugh. “That’s how she was.”

Twenty years later, long retired, Roufa shared 10 things he took away from his battle with cancer. Read them, after the jump.

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Chemo Day 13: Reality bites.

What starts out as a pleasant video blog entry takes an upsetting turn when I decide to show you that some of my hair is falling on the underside of the back of my head.

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My Story Part II: Like sands through the hourglass, those are the grains of our lives

It isn’t the mountain ahead that wears you out; it’s the grain of sand in your shoe.

– Robert W. Service

My Rock and I had just enough time to eat our sandwiches in the waiting area when we were introduced to Michele Speer, the Breast Center Nurse Navigator at Stamford Hospsital and brought to her office. The room was bedecked with pink ribbons, pink teddy bears, and all things pink. We sat on her sofa and she brought up a screen with what looked like the outline of a breast and then a bunch of little white spots forming a crescent. Each dot looked like a grain of salt. They were somewhat sporadic, but clearly there. Michelle explained that they were likely just calcifications, is where calcium salts form and build into hardened grains, and nothing. However, because they are they and the hospital wanted to rule them out, they wanted to have me come in for a biopsy.

I was told to stop taking any and all supplements I’d been taking as part of the D’Adamo Shift plan, as some herbal remedies prevent blood from clotting, and since this is an invasive procedure, it would be best to refrain. The biopsy was scheduled for the following week. And timing stunk. It was just a day or two before a day-long drive up to Maine for a mountain-bike race weekend.

Being the control freak that I am, I asked Michelle to describe the procedure in explicit detail. When she got to the part that my breast would be dropped through a hole in the table with me facing down, and I’d have absolutely no visibility to what was going on, I slammed on the brakes.

“No way, Michelle. No way. That’s not going to happen.”

“What do you mean? You don’t want to see this.”

“The hell I don’t.”

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