The Different Meanings of Survivorship

I spent some time at the Memorial Sloan Kettering Cancer Center last Tuesday for my follow-up visit with Dr. Jewell and attended my support group meeting.  I noticed that Dr. Jewell used the word survivorship to mean one thing then later that day, the social worker who facilitates the support group used the word to mean a different thing.  I have heard a third definition as well.  I asked the social worker why.  She said it's all different to service providers.  From the medical perspective, survivorship begins after two years of "no evidence of disease (aka NED)" status.  Dr. Jewell earlier that day I have not begun that yet.  If I am still NED by May 2017, then I'll begin the survivorship phase.  For survivorship support groups and programs,  survivorship begins once all treatments have ended.  That's why I am in the Gynecologic Cancer Survivorship Support Group.  The focus is on moving forward from the treatments.  For centers that offer programs and resources to cancer patients and survivors such as Annapolis Wellness House and Gilda's Club of NYC as well as therapists, they believe that survivorship begins the day you get diagnosed.  It becomes a matter of surviving each day.  My take on those definitions... those represent different parts of my whole ride.  I began surviving on the day I got my diagnosis: January 15, 2015.  Then I was done with treatments May 12, 2015.  My doctor said the cancer was gone on April 14, 2015 but the surveillance program began August 17, 2015.  To me, survivorship also means moving forward with my life.

I am growing to appreciate what New York City has to offer.  I was thrilled to have had more time this visit to explore the city.  I was able to try out some recommended eats by locals.  I was in a foodie heaven.  I loved walking around the city even in the pouring rain as I trekked across the Central Park from the Upper East Side (MSKCC's main hospital) to the Upper West Side.  I took a challenging yoga class.  I am somewhat sad that the next appointment in May will more likely be my last trip to New York City.  I suppose I have to find another reason to visit the Big Apple.  I think part of the reason why I have grown fond of the city is because the city played a big role in my cancer ride.  If the May visit is my last one, I will make sure I make the absolute best of that visit.

View of the Empire State Building from the
Flatiron neighborhood

The Prospect Park in Brooklyn

View of the Upper West Side from the Central Park-Manhattan

Dr. Jewell was so happy to see I was doing so well.  I looked so different and much better.  It was a matter of making some major changes in my life.  I told her that I had been reassessing the quality of my life for a long while and I was determined to make some positive changes.  And I did.  She told me that whatever I am doing, I need to keep it up.  A healthy, happy life could help keep the cancer away.  She examined all of my surgical incisions and noted I was healing beautifully.  The wound (hole) looks good as well but I would need to work with a different surgeon to monitor that for a while longer.  I will be finding a surgeon in my new city.  She said she knew a couple of top gynecologic oncologists in the country who were based in my home area which was reassuring.  She said she would send me the list of names and I can read up on those doctors.  We both agreed to make May the last visit.  After the May visit, I would have completed a full year of surveillance program with Dr. Jewell and my new oncologist can continue.

The support group meeting was useful as usual.  I said less.  I sat there quietly absorbing all that was said.  A new member joined the group.  She had endometrial cancer as well.  I was fascinated to learn about her journey.  Her journey was different from mine.  She was at stage 1B, grade 3 (the cancer got inside the walls of her uterus) and went through just three chemotherapy and three radiation treatments.  I was at stage 1A, grade 1 (the cancer was contained inside the lining of the uterus).  I told her I just went through hormone therapy and surgery.  The group talked about the aftermath of chemotherapy treatments, which I was unable to relate to but I was the only one to deal with post-op infection complications.  We realized that we all experienced the same aftermath: low energy levels, sickness, etc.  The group discussion was getting heavy then someone said something funny.  We all laughed.  It also was the final point of our meeting.  The social worker said it was a good thing to end with a laugh.

The social worker gave us all an assignment for next month.  We had to find something new that made us laugh.  I did find laughter earlier that day before the support group meeting.  I was laughing hysterically over a great conversation I had with someone via iMessage.  But I needed to find something new.  I have been laughing a lot more the past few weeks.  It's a nice change, actually.  I am not worried about this assignment.  I will find something.  Or rather the universe will provide and I shall receive.