Wednesday, October 12, 2016

October 12,2016 Chat - Warrior? Fighter? The Words we use...

Tonight's chat topic was Warrior?Fighter? The words we use... . We welcomed our regular #gyncsm physicians, patients, those who had been diagnosed with cancer and caregivers as well as those from other Twitter cancer and chronic disease communities. Forty-four participants in all  created over 2 million impressions during the hour chat. For more chat analytics please click here.

Below you will find tonight's topic questions as well as sample answers. You may find a transcript here. Please scroll to the end of the post for Resources.

T1a: What does the term "survivor" mean to you? Do you use it?

  • I usually say "cancer patients and caregivers." People out of treatment and/or in remission don't seem to mind being called pts
  • I like survivor if it means that you are survivor from the moment you're 1st diagnosed. A lot of surveys say survivor but mean NDP
  • Somedays I feel like a survivor, somedays a thriver, somedays a fighter, somedays just overwhelmed. So personal & so dependent.
  • I don't like the survivor label much. Avoid it when I can, but do use it sometimes due to lack of better word
  • My son's vocabulary quiz "To survive is to remain alive, even after great difficulties"
  • I think that the term survivor can be overwhelming for some patients - can make them feel like a failure if they recur
  • That's the term I always use. It has such a wide definition it seems to encompass all my patients.

T1b: What terms other than "survivor" do you use - for yourself or others?

  • On good days... "bad ass" *grin* RT : T1b: What terms other than "survivor" do you use - for yourself or others?
  • Cancer Experienced - I could go for that
  • some use thriver
  • Survivor replaced the victim language. So it is MUCH better than that!
  • There is always "person". We are so much more than cancer "survivors"
  • I say I'm living with cancer. I want to educate people about chronic cancer. Also I'm a lover not a fighter by nature 

T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

  •  I loathe the war metaphors.
  • As a marketer / former nonprofit person I purposely avoid war/battle. Though fundraisers will tell you those get the money.
  • Hearing it said someone lost her battle to cancer, is like fingernails on a chalkboard to me. Hate that.
  • The war analogies work for some - to "fire them up" - but for many it can feel like a failure if you frame it as a WIN/LOSE
  • War metaphors, we picture ourselves standing shoulder to shoulder. Survivor image is Robinson Crusoe or someone in a lifeboat.
  • it especially saddens me that the war language makes hospice or even palliative care "giving up"
T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

  • going with Cancer Experience again
  • I think journey can be good because it gives the idea of a beginning and an end - not win or lose
  • I never use journey
  • It has been a journey for me – with bumps and detours and flat tires and a great appreciation for things - the amazing views
  • both cancer Journey and cancer Experience seem to honor individual differences
  • a trek? maybe it needs its own term - isn't there a special term for those who climb Mt. Everest?
  • I say my cancer journey, experience or mostly my life with cancer (I think that started the 3rd time I got sick).
  • There definitely needs to be a verbal space for those who are living with metastatic disease, with cancer as a chronic illness.
  • I love (& hate) this tension between need for individual words vs. research needing consistent labels 

T4: What cancer terms or labels do you have a negative reaction to and why? 

  • Victim, sufferer, lost the battle - anything that makes the person in the situation sound downtrodden
  • The lost her/his battle to cancer. One of my top cancer language pet peeves. Insulting (IMO)
  • Battlefield analogies. Victim. Man I hate those
  • I try to avoid saying "your" cancer to a patient, instead say "the" cancer when talking about disease status
  • I cringe at Victim.
  • I am also a big hater of the words Prevent and Prevention. What we can do is reduce risk. Risk reduction
  • the lost/battle thing is more obvious when you think about calling someone a Loser
  • And don't get me started on the cancer is a gift thing

T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?

  • Just deeper understanding in general. Many terms are very superficial or show misunderstanding.
  • when someone dies, just say it. Died from colon cancer. or whatever. Truth telling. Plain & simple
  • Could cancer groups be more proactive w/ media to start changing way we speak about cancer? AFSP very active w/ media & suicide
  • Take cue from person with cancer. Use words she/he seems to like. Ask if certain words make them uncomfortable
  • Media - be responsible when reporting celebrity cancer news - whether deaths, remission, risk-reduction. Take some time.
  • Cancer groups - Think twice about battle terms and be sure you aren't excluding those who may need you most
  • few journalists specialize in medical reporting- if interviews are not quoted, risk to misinterpret information
  • Understanding how someone finds strength from life-threatening challenges provides insight on empathethic language
  • I loathe the "silver bullet" language - cancer is so many different diseases. One success does not equal a cure for all 

Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at .

We look forward to see you next month on Wednesday , November 9, 2016 as we chat about Your Health Care Team Members. 

Dee Sparacio
Co-founder #gyncsm


Andrew McDonald: The war of words about cancer - BMJ

Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog
Susan Gubar: Not a Cancer Survivor - NYT

Nancy Stordahl: Nine Cancer Language Traps - Nancy's Point blog
Jen Sotham: The Language of Helping a Loved One With Cancer - Cure
Dee Sparacio: The Words I Use - WomenofTeal blog

Blog | Why I Don't Like the Phrase Cancer Survivor

Blog | I did not fight cancer

Thursday, October 6, 2016

Warrior? Fighter? The words we use... Oct 12, 2016 Chat

Over the past few years we have noticed more men and women diagnosed with cancer and their caregivers/loved ones speaking out about the words used to describe their situations. Some people with metastatic disease do not see themselves as survivors while others do. Some who had surgery but no chemo don't call themselves survivors. Some are unhappy when they read that a friend lost their battle, while others consider themselves warriors. We understand that there is no right or wrong term to use, but we feel it is important to share the thoughts and feelings about these words with each other and our health care providers so we can understand each other better.

Our patient community partner, Smart Patients (@Smart_Patients), recently conducted a survey of 1,000 cancer patients on their platform. In response to the question, "How do you feel about the term 'cancer survivor' as a description of someone with cancer?", one third of the respondents chose negative, one third chose neutral, and one third chose positive. We look forward to having Smart Patients join us to share more about what they learned from their diverse community on this subject.

All those diagnosed with cancer, their caregivers, friends and family, as well as their health care providers, are invited to join us on Wednesday October 12, 2016 at 9pm ET to share your thoughts and feelings.

The topic questions are:

T1a: What does the term "survivor" mean to you? Do you use it?
T1b: What terms other than "survivor" do you use - for yourself or others?

T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

T4: What cancer terms or labels do you have a negative reaction to and why? 

T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?

To get ready for this chat, we have been gathering viewpoints on the words we use about cancer. We hope you have a moment to read through these essays.

Andrew McDonald: The war of words about cancer - BMJ

Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog

We look forward to this lively discussion. Remember, we are a community that respects each others' choices of how to describe a life that includes a cancer diagnosis. 

See you on Wednesday. 

Dee and Christina
Co-founders #gyncsm community

Wednesday, September 21, 2016

TIL - What We've Learned in the Past Year

If you have joined us for any of our chats you know that for the last ten minutes or so of each chat we ask participants to complete the phrase, Today I learned... which we fondly call TIL.

Since we celebrated our third anniversary this month, we thought we would share some of those completed phrases from each of the past year's chats.

September 2015 Gyn Cancer Awareness Month - Spotlight Uterine and Endometrial Cancers
TIL if even one woman with symptoms reads this tweet chat & goes to doctor as a result.... I'll be a happy person @darlakbrown

TIL to remember the importance of education for women,men on gyn cancers, starting in the schools. To Advocate for that too. & more @alenegonebad

October 2015 Open Mic
TIL U can get patients,survivors,researchers,docs in tweet chat room with no planned ?'s & they can have imp insightful conversation @womenofteal

TIL what a wide range of concerns and knowledge women bring with them to #gyncsm @robinsmrtptient

November 2015 Nutrition and Exercise
TIL: @DanaFarber has a nutrition app! @livestrong

Remember to take nutrition and exercise like anything else: some days will be better than others @edicksonmd

December 2015 Looking Back and Looking Forward
TIL: Self care is essential to be able to care for others @shannonwestin

TIL ( but really knew already) GYNCSM is a great group committed to advocacy and education for women's cancer survivors @journeycancer

January 2016 Taking Care of our Caregivers
TIL: Caregivers and patients share feelings of guilt about taking _needed_ time for breaks and self-care. @drbeckershutte

TIL: Just as important to care for the caregiver as it is to care for the patient - best chance for success! @shannonwestin

February 2016 Rare GYN Cancers: Vulvar, Vaginal and Fallopian Tube
TIL Just a reminder from my side of things: Having any rare cancer can be especially scary and isolating because you lack mentors. @drbeckershutte

TIL Advocacy for each gynecologic cancer is stronger when we work together. Thanks all for coming and learning tonight. @btrfly12

March 2016 Genetic Counselors and Understanding GYN Cancer Risk
TIL Knowing that gen counselors have this valuable info could help many patients who may not know/think of that resource. @robinsmrtptient

Genetics is an integral part of cancer prevention. Know your genetics. Get to know a GC. @GeneticCouns @maryfreivogel

April 2016 Re-envisioning Ovarian Cancer Survivorship
TIL I learned how important it is to have discussions surrounding treatment & aftercare so women can learn from each other. #gyncsm #BWSU @blkwomenstandup

TIL: Keep placing personal QOL needs front & center while supporting pts in decision-making. Real needs more valuable than paper @cbushrn

May 2016 Getting Social with your Health
TIL that those dx with cancer can use Social Media to feel connected, learn information, learn what ?'s to ask and support others #gyncsm @womenofteal

TIL about ASCO's COSMO initiative but was unsurprised to see that they still are struggling with quality of life as an outcome #gyncsm @alenegonebad

June  2016 What’s New in GYN Cancer Research
TIL there are oppty for pts to give input to clinical trials. Want to learn more about that and how to connect pts w those opptys @elisabethcramer

TIL: progress, but more work to be done, excited to be able to use FDA approved drugs for disease sites, luv survivorship data @crmillergo

July 2016 Spirituality and Quality of Life
TIL, from a very insightful community, what spirituality means & how others embrace & develop it, esp in challenging times @embosu

TIL (again/as ever) that virtual community is REAL community. I was so tired and pained today. Feel so much better now, thank you! @meredithgould

August 2016 Shared Decision Making and Patient-Centered Care
TIL: #SDM and #PCC are really like "Stone Soup" - everyone needs to put something in! @robinsmrtptient

TIL: PCC is a process, and we can encourage SDM through listening, mutual education, asking more questions @embosu

September 2016 Gyn Cancer Advocacy and #GYNCSM Goals/Aspirations
TIL that time flies, with tweet chats as well as kids. How can it be three years already? And that there is so much more to do. @drbeckershutte

TIL: (knew) How special Dee and Christina for creating this wonderful community - now we need to reach more gyn cancer survivors!  @shannonwestin

Thank you everyone who has joined us during the past year. We look forward to learning and growing in the year ahead.

Dee and Christina 
#gyncsm Co-founders

Note - View our CHAT TOPICS page (found via main top menu) to find recaps of each of our chats with links to the full transcripts.

Wednesday, September 14, 2016

September 14, 2016 Chat - Gynecologic Cancer Advocacy & #gyncsm Community Goals

Today we celebrated our third anniversary as a chat and Twitter cancer community.

We want to take this opportunity to thank this year's health care moderators, Dr. Rick Boulay, Dr. Shannon Westin, Dr. Merry Markham and Dr. Anne Becker-Schutte. We also want to thank one of our founding health care moderators, Dr. Don S Dizon and Dr. Matthew Katz who wrote our Tweet Disclaimer. And to all the organizations and individuals who supported us by sharing our tweets and information about our chat, thank you.

Since September is Gynecologic Cancer Awareness month it was fitting that our chat topic was Gynecologic Cancer Advocacy and #gyncsm goals. We had 34 participants join us for our chat and had over 1.5 million impressions. Additional analytics may be found here.

The questions we used to guide our discussion appear below with some sample responses. Please see our transcript here for the complete responses and the names of additional advocacy organizations.

T1a: What skills have you gained in learning to advocate for yourself / loved ones / patients?

  • Using social media as a way of promoting awareness. Advising women to journal their symptoms.
  • Still working on speaking up for myself when I'm in the doctor's office. A work in progress. I do fine speaking up re: my kids
  • Have learned importance of going into appts prepared as much as possible.  

T1b: Being your own best advocate when it comes to your health isn't always easy. What are some tips and resources?

  • Picking up new words quickly. If in person, asking what they mean, how they are spelled, etc., helps me learn.
  • If possible, bring a buddy. A second set of ears, voice for clarification, note-taker, etc can make a huge difference
  • Society for Participatory Medicine @s4pm is a great group. Talking w/ other patients. @intakeme has ePatient101 online course 
  • @power4patients another good resource. @smart_patients community and other communities

T2a: What groups/organizations are you involved w/ that advocate and raise awareness for women's cancer? 

T2b: How will you be advocating for yourself and others this month? Share as well any events/campaigns others can join.

  • wearing my teal ribbon bracelet all month and starting conversations, wearing teal on tuesdays, RTs and posts on my personal FB
  • Just gave a lecture to our ovarian cancer survivor group, keeping teal on whenever possible, bringing up gyn cancer on twitter!
  • Just completed a documentary with PBS "Close to Home: cancer survivorship" airs next week on PBS 39. 

T3: For gynecologic cancers, what are the barriers in raising awareness? 
In advocating for improvements in care?

  • All rare diseases are tough to shine the light on
  • Women can be afraid to discuss gynecologic cancers - it can be an uncomfortable topic - they feel alone 
  • Still see a lot of taboo with gyn cancers. Also, many women are not educated about their own bodies. That is the starting point.
  • advocates of less prevalent cancers can definitely gain by working together to amplify their voices - collaborating where can

T4a: In the past 3 yrs, have you seen changes/progress in GYN cancer awareness, treatment and advocacy? 

  • Huge patient advocate presence on social media - easier for patients to interact with each other and share knowledge
  • There has been a strong increase in advocacy efforts through resources and education from partners like @GYNCancer [correct tag @NOCC_national] @OCRFA
  • The cancer moonshot can only help. The PBS documentary on cancer last year helped too.
  • Progress with the Immuno-oncology drugs and other biologicals. Slow but steady improvement

T4b: What issues do you think it's important for the #gyncsm community to advocate around?

  • Something I wonder about is uterine/endometrial cancer... why no large national organization when more cases than cervical, ovarian
  • Encouraging clinical trial participation
  • survivorship planning, end of life too
  • patient reported outcomes, quality of life, survivorship

T5: What can we do to better fulfill [#gyncsm's] mission? How can we bring more gyn cancer survivors into our community? 

  • I'd love to find more participants.
  • I'd love to see a .gov or neutral supported site with patient communities listed dr's could feel comfortable referring patients too. 

During tonight's chat we launched our 2016 #gyncsm Community Survey. All followers and chat participants are invited to answer the short 10 question survey which is located at .
We will collect responses from today until October 11, 2016.

We hope you will join us on Wednesday , October 12th at 9pmET for our chat Warrior? Fighter? The words we use... .

Remember you can always continue this conversation on Smart Patients at .

Co-founder #gyncsm 

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