Monday, September 12, 2016

A Caregiver's Story: On a Brisk November Saturday...

Over the past few years, we have spotlighted the stories and voices of women diagnosed with a gynecologic cancer. Today, we are pleased to share a caregiver's story with our community. Dan's wife, Lizzie was diagnosed with the rare cancer, MMMT, mullerian mixed malignant tumor or carcinosarcoma. Here he poignantly shares his experience.

On A Brisk November Saturday in 1982

On a brisk November Saturday afternoon in 1982, I was looking for something to do that night,not something typical, but something with substance. Looking through the weekend section of The Philadelphia Inquirer, I found it. There was going to be a poetry reading at a bar I hadn’t been to located on the southern edge of center city Philly, a place that was neither here, nor there.

With enough time to arrive, I drove down from the little row house I had bought at a HUD sale, renovated over a three year period, in a leafy neighborhood a short walk from the sprawling Wissahickon Park. After finding a parking spot, I walked to the thirteen hundred block of South Street, a block that was normally empty of activity, but for this bar, and the occult shop just down the block.

The Bacchanal was where artists, writers, art students and other artsy types who lived in or near center city hung out. The façade was a cacophony of bas reliefs, pieces of sculpture and painted brick. Color, motion and emotion were evident.

When I walked in, the art on the façade followed, for the bar, walls and ceiling were captivating in what I saw. I inquired about the reading and was directed to a room through a double door opening in the wall. There was no one in there, so I picked what I thought would be the best spot: a single chair table off center from the podium located in a small nook that would allow me to lean the chair back against the ninety degree outcropping, thus producing a triangle.

Within ten minutes of my arrival, people began filing into the room. Shortly, the room was overflowing with males, females, long-hairs and short-hairs. There were three people at the podium, two males, one female. Before too long, the males left and the attractive, wild-haired female took the mic.

“Hello, everyone. Thank you for coming to the Bacchanal and the monthly poetry reading of Open Mouth Poetry. My name is Elizabeth June Madden and I will introduce all of tonight’s readers. First is…”

The evening rushed by. Poetry of various types was read. There was laughter, outcries of “Right on!” and quiet. Then, she read. The room had an air of anticipation and everyone followed every word. It was obvious that she was on a totally different level from all the other readers.

When she finished, she announced when and where the next reading was, thanked everyone for coming, offered a safe journey to all.

The room was now filled with standing people, some talking, others moving slowly to exit. I followed the latter crowd knowing that in doing so I would come within inches of her.

“Hi. Really enjoyed tonight, especially your poetry.”

“Oh, thank you.” Her high rosy cheeks glistened under the subdued lighting.

“I’m Dan Zibman.”

“I’m Elizabeth Madden.”

We were both in our thirties, had experienced life, had put ourselves through college, had lived in similar places (the Bay Area, the Miami area) at different times.

On a hot, humid August Saturday in 1984, we were married at a small, lovely mansion we had rented which adjoined an Episcopalian church in St. Davids, on Philadelphia’s main line. It was a great party although I couldn’t enjoy the wonderful food as my taste buds had shut down.

On the coldest day in February, 1986, Lizzie gave birth to our daughter, our only child. That night, the three of us lay in the hospital bed looking out the window at center city Philly below and the gently falling snow.

In the Spring of 2014, Lizzie complained of a vaginal infection, so she drank cranberry juice, which, in the past, often helped. This time it did not, thus causing her to see her gynecologist. The report was an infection resulting in a round of antibiotics. That seemed to help.

That summer, we drove to Oak Island, NC to see friends who had retired there. We had a wonderful
time and took a different route home to central NJ. Driving up US 17 along the bayside of Albermarle
Sound, we had lunch and explored the pre-revolutionary war town of Edenton, NC. Once through the Chesapeake Bay Bridge Tunnel, we stopped in the lovely, peaceful Chesapeake Bay town of Onancock or dinner before overnighting near Assateague/Chincoteague on the way home.

Back in New Jersey and not too far from home, I suggested that we have pizza at our new favorite place in Bordentown. Uncharacteristically, Lizzie said that she would rather go straight home as she wasn’t feeling too well. We talked and she agreed to return to the gyn.

After a series of CT scans, we were told that a few masses were found and an gynecologic oncologist was recommended. We were stunned, but kept our spirits high. At this point, I realized that my job was to keep Lizzie “on the good foot” by my being upbeat and encouraging, continuously.

In the early morning of the day we were to confer with the surgeon, Lizzie was in distress. I called the surgeon and was put through to his on call partner who arranged for us to enter the hospital via the ER. Being there was very helpful, as simply staying at home and waiting for the appointment made no sense.

More scans, then tests. Finally, we met the surgeon, a well trained (Dana Farber) young man with a great bedside manner. He explained that he will operate that afternoon, it was that critical. The initial assumption was ovarian cancer although the biopsy would define it.

I called our daughter who lived with her fiancé in Baltimore. They immediately left to come be with us.

Before the surgery, Lizzie and I joked and laughed. “Gotta be upbeat,” was all that ran through my head.Five hours of surgery later, with our daughter and future son-in- law now at the hospital, Lizzie was wheeled into the recovery room. The anesthetics used had caused her to swell to such an extent that even her eyes were swollen. Slowly, the effects wore off.

During the surgery a small diameter tube had been positioned in Lizzie’s stomach area. This was to allow for the administration of chemo directly onto the presumed area that needed it.

Now admitted to the hospital, we took up residence on the surgery floor and spent the next three weeks there. Part of this time was to allow for another operation as a small mass had been located immediately under her right lung. That operation, while much shorter in time, was more troublesome as Lizzie now had difficulty laying on her back and side.

With Lizzie in the hospital, I spent 10-12 hours a day with her, walking her around the floor for exercise, talking, having visitors, falling asleep. Eventually, I fell ill with a bad cold and had to stay home for three days which troubled me greatly.

When we received the biopsy report, we learned that it was not ovarian, but a much more rare cancer specific to women, MMMT, mullerian mixed malignant tumor or carcinosarcoma. Additionally, it was stage IV because of its having spread beyond the peritoneal cavity. This was not good news, but we were still in shock from all that had happened, so this “news” did not trouble us as much as it could have.

Finally, Lizzie came home and shortly thereafter we started our first round of chemo (carboplatin/taxol followed by Neulasta) which took us through the winter. By this time, Lizzie was much better and after close examination was declared in remission. We were thrilled. In the midst of this, Lizzie demanded that the plastic tube be removed from her stomach as it was not being used and only causing her discomfort (she could not be supine and had to sleep, or try to sleep, sitting up). Relief arrived with the tube’s removal (the tube was not being used as the chemo had to circulate as opposed to being placed in a specific spot which would have been the case if it had been ovarian).

All this was great as the plans for our daughter’s wedding were starting to become reality. At the wedding shower, Lizzie was not only her typically beautiful self, but also full of her normal high level of energy.

The Spring yielded to the Summer, and soon something was wrong. The cancer was back, the remission short-lived. After speaking with the young onco-gyn surgeon, he told us that Lizzie would indeed dance at our daughter’s wedding. But, he also told us that she had about six months to live which meant the end of the year (2015) or so.

This news was delivered to us on the phone as we sat in the little sky blue roadster Lizzie loved so much. After we hung up, we looked at each other and said in unison, “Fuck it. We’re getting through this.” Our next move was to call our daughter and tell her that we were on our way to visit, right now, that “we had to get away.” And so we drove to Baltimore.

With the August wedding now rapidly approaching, Lizzie was struggling and in great discomfort (She had to lay flat out on the back seat of our car as we drove the two and a half hours to Baltimore). Lizzie did as she had so wanted to do, be the Mother of the Bride, walk gracefully and beautifully down the aisle with our wonderful Baby Girl between us. Lizzie even found the strength, the will, to dance, boogieing as though all were well.

She delayed the start of the next round of chemo until immediately after the wedding because she wanted to feel reasonably well rather than fully awful. Thus, on the Tuesday following the wedding, we resumed chemo only this time with Avastin/taxol and no Neulasta, thankfully. This regimen was recommended after meeting with a gyn oncologist specialist at Fox Chase Cancer Center in Philly.

Over the next few weeks, Lizzie responded well to the Avastin, so well that we drove up to Dana Farber in Boston to meet a woman who is considered an expert in MMMT. The doctor not only saw us, but also arranged for us to see one of her colleagues that same day and to see another doctor within two weeks.

We did learn, however, on this initial visit to Dana Farber, that there were possible deadly effects from Avastin due to the potential for bowel perforation. This was the first we had heard of such a possibility and, since the reoccurrence of the tumors showed that the largest one was literally resting on Lizzie’s bowel, we were concerned.

Sometime in the Fall, we went to Sloan Kettering to see one of the other MMMT experts in the country. We did this because we could, not because we were unhappy with our doc at Dana Farber. By this time, our perspective was, “The more information, the better.” The doc at Sloan, while with “impeccable”credentials, was too impersonal for us. Her personality approached the sarcastic. Lizzie and I looked at other and said, “We won’t be returning here.”

A good friend and former colleague had been a cancer researcher before changing careers. However, he used this extensive knowledge to become one of Wall Street’s top-rated biotech analysts. He gave us very sound advice and encouraged us to become part of a clinical trial. We tried this and were on the wait list at Dana Farber. Our doc there wanted us to use the so-called “frontline drugs” before doing a clinical trial explaining that the trials were when all else had been tried, and had stopped working. Lastly, we learned that a very small percentage (~10%) of cancer patients end up in clinical trials and that, of those, a much smaller percentage have success.

Lizzie continued to do well. Thanksgiving and the Christmas season found us reasonably happy. The biggest challenge was the constipation which, at times, was horrible. Adjustments were made to the chemo infusions which did reduce this issue.

We made our third visit to Dana Farber, taking the train a second time, when our Doc suggested that we stop the Avastin, that we had had a “good run,” but that the bowel perforation issue was too great to ignore. She emphasized that women had died of this rather than the cancer that afflicted them. Her words were strong and,so, she informed our local oncologist to cease the Avastin with the first chemo administration in January and to administer taxol only.

The New Year came and went and, so, too, did the “six months”. This had been sitting on my mind and, although we did not discuss it, I am sure it was front and center in Lizzie’s beautiful mind, too. Late winter had Lizzie and a few of our female neighbors/friends, three of whom are cancer survivors, pile into a neighbor’s SUV and drive to Pittsburgh. Once there, they saw the Andy Warhol Museum, other museums, enjoy good food, stay at a B&B and visit “Falling Waters” which Lizzie loved.

Once back home, at the beginning of Spring, the same “crew” drove to Philly to visit the Pennsylvania Academy of Fine Arts and sip coffee and have a generally good time. All was going well. So much so that I commented that, “The butt was back.” Lizzie had the most enticing derriere of any woman. She had lost so much weight that this “feature” had been lost, too. Now, she was gaining weight and looking more and more healthy.

Throughout the Fall and Winter, we made several trips to Baltimore often going via Annapolis. The plan was that we would retire in July, 2016, have sold the house in central NJ by then, buy a place in Annapolis and, thus, be much closer to Baby Girl and her man. We had even made offers on a couple places, but they were rejected. Nevertheless, we maintained the hunt.

In April, we had made plans to visit Dana Farber for the fourth time. Train reservations were made, the hotel room reserved.

Our Dana Farber doctor now wanted us to stop the taxol and switch to Doxil. This was encouraging as it meant once a month rather than three times a month as with the other drugs. The only downside was that we would have to resume the dreaded Neulasta. Lizzie said that she would put on her “Big Girl pants” and do what had to be done.

The trip to Boston never happened. In mid-April, something was wrong, very wrong. We had had the first dosage of Doxil, but could not do the Neulasta as we were now in the hospital. I thought, as did Lizzie, that we would be there for a week, maybe a day or two more, but that was it.

There were procedures to relieve fluid buildup (paracentesis), ct scans, discussions about the next dosage of Doxil. By the end of the second week in the hospital, I knew that My Darling Lizzie would not be coming home. She knew it, too. So, too, did our daughter who was now with us for an extended stay.

My darling wife of almost 32 years, died on 18 May 2016 after a 20 month struggle w/ MMMT. I spent every moment with her while she was in the hospital this last time and, eventually, hospice, sleeping in her room, whispering to her throughout the night that I was there, that I Loved Her, repeating these words over and over when she could no longer speak.

Her quality of life was quite high for sixteen of those twenty months. If you had met her in February or March of this year, then you would not have known all that she had been through, what she was going through.

Lizzie was/ is in my heart more than I had ever thought a wife/lover/best friend/ partner could, or would, be. She was one of the most intelligent people I had ever met. She was beautiful, kind, thoughtful, sensitive, insightful into what others had in their hearts, energetic and creative, embraced all regardless of race/culture/religion/background. She did, however, have difficulty with those with attitudes, those who were not pure in their hearts. Additionally, she was one of the best dancers on any dance floor anywhere and was a joy to watch. Oh, she had her “tough” side. She was, after all, from a working-class neighborhood in Philadelphia, just like myself, but that toughness tended to be reserved for those whom she loved the most and was usually triggered when she was disappointed with something that was said or done. And, she was always right.

Lizzie worked hard her entire life, earned everything she achieved and when she could just “take it easy”, she still chose to work. That was who she was.

I loved /love her deeply, completely as she did me. The gift of her love liberated me, allowing me to love fully and to be loved fully in return. And, that’s the way it was for her, too (although she would initially reject such a notion). I am a lucky man and am deeply grateful to my Lizzie for the relationship that we built.

I weep everyday, have placed “altars” around the house consisting of photos of her, pull her clothing that hang in our closet to me each night, so that I can smell her enchanting scent, touch the box containing her ashes, lightly glide my fingertips over her image in the photo I had taken of her on a summer’s day on the big, wide beach in Brigantine, NJ, in 1983.

To paraphrase WH Auden,
“She was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song”

I send Love to all those going through the limitless heartache of having lost a spouse/significant other.

~~~~

Thank you, Dan.

Dee and Christina
Co-Founders #gyncsm

Note: more information about Uterine Sarcoma may be found on the NCI website at
http://www.cancer.gov/types/uterine/hp/uterine-sarcoma-treatment-pdq

1 comment:

  1. This comment has been removed by a blog administrator.

    ReplyDelete