Memorial Sloan-Kettering Cancer Center: A Closed Chapter

I made my final trip to New York City last week to see Dr. Jewell for the last time.  I decided to extend my trip a bit longer because I wanted to experience New York City a bit more after having discovered that I grew to love the city.  I stayed for four days.  When I first started going to New York City last year, I remember being very resistant to the idea of the city.  I have come to find that it is a wonderful place to visit.  While I was walking to the subway station from an evening yoga class, I was actually toying with the idea of living there.  I could imagine myself there.  I love the walks in the city.  I love the parks.  It's a foodie's paradise.  Yoga classes are great there.  There are great outdoor art.  There's always something happening.  I loved sitting in cafes as I wrote.  People-watching is the thing to do. I am glad I grew to love the city because I would definitely find another reason to visit!  I am just relieved it's not the cancer center that is getting me there.  Maybe it will be to visit a friend, to catch a show, or simply why not?

The Boathouse at the Prospect Park (Brooklyn)

  Since watching the "Kate and Leopold" movie, I have always wanted to walk
across the Brooklyn Bridge.  I was happy to make it happen.

I had such anticipation for my final appointment and final in-person appearance at my support group meeting.  It was strange to go back to a familiar place to deal with many unfamiliarities.  My regular interpreters were not available.  I was sad.  My regular interpreters were not available for neither the appointment nor the support group meeting.  I had to orient the interpreters and it was not something I wanted for my last visit.  I also hoped to thank my regular interpreters for being there the whole way.

                 

The Rockfeller Outpatient Pavilion on 53rd Street and 3rd Avenue.  This is where I saw Dr. Jewell on 6th floor for appointments, scans, and tests.  The surgery took place in the main hospital on 67th Street and York Avenue.

Dr. Jewell seemed a bit disappointed that I was no longer seeing her even though she recommended that I do so.  I have found a new oncologist, Dr. Angel, in my new town and will begin working with her in August.  Dr. Jewell said that rules have changed and those in remission from endometrial/ uterine cancers no longer have to do pap smear every three months.  It is required annually.  She said that I still have to do vaginal, pelvic, and rectal exams every three months for one more year to make sure there are no tumor growths in my vagina and pelvis.  This change of rules surprised me and was something I discussed with my Gynecologic Cancer Survivors support group later that day.  Other survivors said that they have heard of such rules but as one woman said her cancer showed up without any symptom or indication of tumor growth.  I was advised to advocate for myself and ask for pap smears more often.  Early detection is key.  I am going to see what Dr. Angel says.

I am still processing my genetic test results as well as learning more about genetics.  I will be doing a separate blog post about my genetic test results once I have grasped the information. Genetics are definitely complicated.  I felt Dr. Jewell was abrupt and reactive to my genetic test results when she suggested that I play safe and have my ovaries and breasts removed.  I was thrown off by her suggestion because her recommendation conflicted with the genetics lab and genetic counselor's recommendations that I keep up with my surveillance plan plus monitor my breasts and ovaries.  I was feeling deflated after the appointment.  They certainly cut out a lot from me...  tubes, uterus, cervix, a chunk of skin, and now they want to take my ovaries and breasts away.  That felt too extreme.  I know it takes time to recover from a major surgery.  An infection on the top of it didn't help.  I am almost back to where I was before cancer.  I do not want to go under the knife for a long time.  Dr. Jewell could sense my resistance and she said maybe she does not know enough about my genetic test results.  She said she would consult with the cancer center's Genetics Team by sharing my results with them to see what medical management recommendations they have.  I am still waiting to hear back from Dr. Jewell and the outcome of that consultation.  I am going to see what Dr. Angel has to say about my genetic test results as well.  I have to tell myself again and again that having cancer genes do not mean you can get cancer.  It just means the risk is elevated as compared to the risk for the general population.

It was bittersweet to attend the support group meeting in-person for the last time.  I will continue to participate remotely since it has worked out nicely.  I do not have to be a patient there to continue participating in the support group meetings.  A new member joined the group and she was a young woman who just survived endometrial cancer as well.  It was sad to see someone younger than me but I was glad to meet someone who knew what I went through.  She spoke of her struggles over losing the ability to bear a child.  It was all too familiar to me.  The group discussed in depth particularly about advocating for what is best for ourselves not what the doctors think.  That was helpful for me in light of my genetic test results.

I left New York City Wednesday morning closing the chapter on the regular visits to Memorial Sloan-Kettering Cancer Center.  Despite dealing with cancer, it was the trips to MSKCC that made me grow to love New York City.  That was definitely a blessing in disguise.  I'll be back, Big Apple!

The Waiting Game Re-visited

The universe can be weird sometime.  A few hours after I posted my latest update yesterday about being fearless, I got a call from the genetic counselor.  Fear was thrown right in my face and I felt scared all over again.  I thought the purpose of that call was to discuss a potential battle with the insurance company to cover the cost of genetic testing.  Nope.  She had the results already.  I was surprised by how fast it took.  I was more shocked that my insurance company did not even turn it down, considering how much I have fought against them to cover the medical expenses in 2015.  She said I had to come in to discuss the results.  Ahem.  When I first met with her four weeks ago, she explained that if there was a negative result she would call me and tell me over the phone.  If it's either positive or uncertain variant, I would have to come in to discuss.  That phone call was a blur for me.  I was more prepared for the potential news that my insurance company denied the claim.  I was not prepared for this.  I caught the following words, "variance..." and  "too complicated to discuss over the phone..."  I scheduled the appointment for Thursday, May 12th.  It was the next available appointment.  While I dreaded waiting for ten days before learning more, I am used to the waiting games that come with dealing with cancer.

I remember detesting the waiting game between the first phone call with the cancer diagnosis and the first meeting with oncologist #1.  And then I left that appointment without information I needed (no interpreter).  And then oncologist #2.  Nil.  I waited six weeks before getting all the information from oncologist #3 to fully understand my treatment options.  During that period, there were several tests.  I remember waiting anxiously for results for each test.  I waited two weeks after my surgery to learn of the stage.  This latest waiting game feels too familiar to me but I am coping better this time around.  I immediately pushed myself to continue with my routine even though I did not feel like it.  Keeping myself busy has significantly helped the past 24 hours and will continue to help me until I meet with the genetic counselor.  A massage appointment this evening was a treat as well.  Amazingly, I was able to quiet my own mind during the massage and just be in the moment.

Last night I recalled the recurring discussions in my support group about how it is so easy to get scared whenever something comes up, wondering if the cancer is coming back to haunt us.  I could relate to that last night.  I was wondering... what other cancers do I have?  And of course my imagination went wild, scaring me more and more.  Then I had to remind myself that the genetic test just communicates what cancer risks I have.  Preventive measures can be taken.  I re-read the packet of information that the genetic counselor gave me.  "Hereditary cancer" is repeatedly mentioned.  Maybe I have the type of cancer that is hereditary.  I'll find out on May 12th.

"Fearless is the new pretty"

That is a quote that my friend and I noticed on a chalkboard in a cute boutique in town.  We were walking in a cute shopping district on the evening before she returned home to California wrapping up a wonderful long weekend celebrating the fact I've been in remission for a year.

A fellow endometrial cancer survivor made the recommendation that I celebrate every year by taking a trip.  I thought that was a nice way to celebrate life.  I have heard from other cancer survivors about how they celebrate.  The date I got news that I was in remission was April 14, 2015.  I was not done with the wild, medical ride until much later though.  But I can assert that I am relieved that the major surgery got rid of the cancer.

My friend and I went to Canada to celebrate.  We were celebrating her engagement as well!  I'm excited to see her get married in September.  I had this itch to do something absolutely crazy.  I asked her if she was up to it.  She was nervous because of her fear of heights.  Later on, she said that she wouldn't have gone if she knew about my tendency to do crazy things.  I have skydived twice.  I have gone ziplining.  I have gone paragliding.  I swam from Alcatraz to San Francisco.  I have taken trapeze lessons.  I have done more crazy things.  The Edgewalk was the next crazy thing to do.   I am glad I did not tell her!  The Edgewalk at the CN Tower in Toronto.  And it was mind-blowing to go out on the edge of a tall tower and walk along the edge.  It was scary.  I did not like leaning forward but felt comfortable with leaning backwards.

 





While I was walking along the edge, I was remembering the battle with cancer and infection.  I did not choose that ride.  I choose to walk over the edge but I did not choose that medical roller coaster.  I was thrown on that ride and dealt with it a day at a time.  And I did it.

Someone asked me a few days after the Edgewalk why I keep on doing crazy things.  I said that I noticed that as I grow older, my fear grows.  That is the fear of taking risks and connecting with people.  After my solo eight-day camping trip across the southwestern United States in 2001, I learned afterwards that the fear subsided.  I decided that I would continue to find adventures that would remind me that my fear is real and that I should continue to put it aside to take the plunge in living my life to its fullest.  It has worked and I will continue to seek out adventures.  I have found that yoga is also a wonderful way to continue to resist my fear.  I continue to push myself to do challenging poses.  This picture was taken ten days ago and it was the first time I attempted the headstand far away from a wall since before the surgeries.  My core strength is coming back.

Fearless is indeed the new pretty.  Let's roll.