Gynecologic Cancer Survivors Support Group: A Closed Chapter

I was thrilled to return to my support group meeting at Memorial Sloan-Kettering Cancer Center via video last week.  I was unable to participate for the past few months because it conflicted with a class I was teaching.  It was also bittersweet because I had to say farewell.  The cancer center decided to change their programming and was not going to offer the support group meetings in the regular location where videoconferencing was available.  They were moving to a different location and the new location does not have any videoconferencing capability.  If I want to participate, I would have to go back to the Big Apple.  I do not have any problem going back.  After all, I love the city.  It's going to be difficult because with the teaching I do here in Rochester, I cannot get away to attend the support group meetings.  I am sure at one point down the road, I'll be able to pop in and say hi to my fellow cancer warriors.

My wonderful Resources for Life after Cancer social worker is retiring tomorrow.  It was my final farewell to her as well.  She's amazing.  She was the one who made the videoconferencing possible.  I love that she mailed me information and resources.   I also had to say farewell to an interpreter who had been with me for a long time.  Bittersweet, indeed.

I was pretty quiet throughout the whole meeting... largely because I was having a hectic day.  But I was just absorbing everyone's stories and experiences.  I could relate to some but did not relate to some.

Do I need a support group now?  I am not sure.  My life is pretty full as it is now.  The support group was instrumental in helping me recognize that I was not alone in my own experience.  The group members validated my feelings, struggles, and fears.  If I was experiencing things I could not explain to those who never had cancer, they would tell me I was not alone.  The support group was what I needed the most for a specified period of time.  I don't know what my needs will be in the near future but if I happen to be in New York City on a third Tuesday of the month, I am definitely attending a meeting!  It is often said that shared experiences connect us.  For sure, I do find myself bonding with fellow cancer warriors.  I met a cancer survivor at a holiday gathering recently and we immediately bonded.  While I am not finding support through the group anymore, I continue to find support by meeting people unexpectedly.  That is, in my perspective, the universe's way of reminding me that I am never alone.

A Case of Pathologies

I am sitting outside enjoying the cool Floridan morning as I am happily blogging again.  I have been reflecting the past few days about how my life in Rochester is completely different from the life I had in Annapolis.  Annapolis was all about medical issues and healing.  I have been in Rochester for almost a year now and it has been about moving forward.  I gave up a year of my academic life to focus fully on getting myself back to good health.  This year has been about reclaiming my academic life.  I have returned to teaching interpreting after a 10-year hiatus.  I am loving it! :-) What I had forgotten was how time-consuming teaching is!  There's preparation, grading, and discussions with students.  With my full-time job, my dissertation work, and teaching, there was almost no time for me to blog.  I continue to come up of new posts to write and the words remain stirring in my mind waiting to be typed out. I shall be on a writing spree this winter break.

This post is about a case of pathologies.  I learned a few months ago that every single time I get a new oncologist, they would order pathology study of my cancer cells.  Remember the purple and pink cells on a slide that I held in my hand?  Dr. Hays was my gynecologist who removed the uterine polyps and ordered pathology study of those polyps.  Since Dr. Hays and Dr. Diaz-Montes (my first oncologist who I did not want to work with after the initial two appointments) were in the same medical center so there was no need for Dr. Diaz-Montes to order a new pathology study.

When I sought a third opinion at the Memorial Sloan Kettering Cancer Center, Dr. Jewell ordered another pathology study.  I did not realize this.  Remember, I was so overwhelmed by everything so the little details mattered none to me at that time.  I got a bill from the University of Rochester Medical Center for a pathology done on August 8th.  I was confused because I did not go to a lab or anything.  I had not seen a doctor for any part of me to be taken for pathology.  Upon further investigation, I learned Dr. Angel ordered a pathology study of my cancer cells.  I inquired as to why.  My take was this: "It has been confirmed that I had endometrial cancer and the cancer cells are gone... what's the point of trying to prove it again and again?" 

Dr. Angel's staff explained that it is customary for any oncologist to order pathology study of the original cancer cells.  They do not want to take the other oncologist's lab report at face value.  I decided to go back and read ALL three pathology reports and I found conflicting details.

Anne Arundel Medical Center: "Invasive well-differentiated endometrioid type adenocarcinoma. Figo grade 1."

Memorial Sloan Kettering Cancer Center: "Endometrioid adenocarcinoma involving an adenomyomatous polyp. Figo grade 1.  Complex hyperplasic with atypia.  Endometrium is profilerative." 

University of Rochester Medical Center: "Endometrioid adenocarcinoma with mucinous features. Figo grade 1" 

I asked Dr. Angel at my three-month follow-up apointment last month about why those reports are different.  She gave me the most beautiful explanation.  She said that my cancer cells are like a painting.  Each pathologist interpret the painting differently.  All of them confirmed that I had endometrioid adenocarcinoma which is one type of endometrial cancer.  I was baffled by the "mucinous features" because based on my research, it is a rapid-spreading type.  Dr. Angel said my cancer cells had mucinous features but did not fit the criteria to be called "mucinous".  Mucinous indicate it is a type that spreads rapidly.  Upon learning this, I was relived I had the surgery sooner than later.  

She also reviewed the Memorial Sloan Kettering Cancer Center's surgical pathology report of my uterus, tubes, cervix, and lymph nodes after they were removed.  She gave me much more details than Dr. Jewell did.  I left my appointment with Dr. Angel wondering why Dr. Jewell was not forthcoming with me.  Perhaps she did not want to overwhelm me.  I'm not sure.  Dr. Angel said that at the time of diagnosis (after studying the purple-pink cells), I was definitely at Stage 1.  Figo grade 1 is typically associated with Stage 1 (not always, though).  It is not clear whether I was at Stage 1A or Stage 1B.  She said that after I was diagnosed, I immediately started hormone therapy.  The god-awful Megestrol that made me feel horrible.  After two months, the hormone therapy was working.  My cancer cells became precancerous.  Dr. Angel said that it was a good thing I had the hysterectomy because the cancer would have come back after stopping hormone therapy.  It is possible that if I did not do the hormone therapy and took the time to decide, my staging might get worse considering the 'mucinous features'.  Dr. Angel said that on a bright note, because my cancer has gone from Stage 1 to precancer, it is pretty likely that the endometrial cancer would never come back.  However, because of my genetic test results, we have to carefully monitor my breasts and ovaries going forward to ensure that breast and ovarian cancers do not emerge. 

The review of my pathology reports and the conversation with Dr. Angel were instrumental in helping me get the full picture of everything.  It also helped reconfirm that I had made the right decision.  Dr. Diaz-Montes wanted me to get the hysterectomy right away but I was not ready.  I had to mentally and emotionally prepare myself.  I started hormone therapy immediately to buy me some time before I went along with the hysterectomy.  As much as I hated hormone therapy, I do appreciate undergoing hormone therapy because it did actually work.   

It's a bad time to have cancer

It was extremely difficult to wake up to the news this morning that Trump is our next president.  A million thoughts came to my mind in terms of what it is going to mean for women, Deaf people, people of color, LGBTQIA individuals, minority groups, individuals with disabilities, domestic and sexual violence survivors, and etc. etc.  It is clear that this country is divided.  I can only hope for unification.  But how?  I don't see it but am holding out for hope nonetheless.  Now how is this political depression even related to my cancer blog?  Let me explain in a moment.

I dragged my hopeless self to the Wilmot Cancer Center at 7 AM to do my routine bloodwork.  As I said to my friends, life does continue and I have to continue participating in my surveillance plan.  I did feel for a moment, "What is the point!?!" but I pushed myself to move forward.  I will see my oncologist Tuesday morning for my next three-month appointment for additional screening tests.

I walked home from the cancer center and it already started raining.  I didn't have an umbrella but I walked very slowly in the rain instead of running.  I figured the weather gods were crying and that I might as well cry along with them.

I dived into my work all day today while watching the news and Facebook news feeds.  What broke my heart is seeing how the division of this nation has driven a wedge into the endometrial cancer support groups on Facebook.  We turn to each other for support and resources.  I observed with sadness as those group members who once lifted up each other immediately turn against each other. The argument is mainly over Obamacare.  There are members who are terrified that they might lose the insurance coverage that helped save their lives and continue with their surveillance plans.  There are others who appear to be insured with insurance coverages through sources other than the healthcare marketplace who insist that Obamacare sucked and that Trump would come up with something better.  Fear and hatred are on the rise within those groups.

I was on an Obamacare plan August 2015-January 2016.  This insurance coverage was instrumental in making sure I could continue with my surveillance plan AND to treat the post-surgical infection I had that lasted over six months.  It was Obamacare that paid for my surgery #3 in October 2015 to get rid of the infection and I got follow-up care to monitor the surgical wound.  I am on a group health plan right now but I am forever grateful that Obamacare was available to me when I needed it the most.  I know there are numerous women who are battling endometrial cancer who depend on Obamacare.  The same is true for numerous individuals who are battling other types of cancer. Granted, Obamacare costs were on the rise and that was frustrating for me.  That needed to be addressed and Hillary was commited to working on that.  Completely removing Obamacare and replacing it with what?  I have no idea what is up Trump's sleeves but I can only conclude that it is definitely a bad time to have cancer.

September: Endometrial Cancer Awareness Month

Of course life continues to keep me busy as I dealt with numerous deadlines.  I have an academic writing life as well so focused my energy on that the past couple weeks.  With those past behind me, I can blog again.  It does help that I am relaxing in the Santa Monica mountains outside Los Angeles as I write this post.  Sometime getting away is good for the writing soul.  In the past two weeks, I was tackling a publication deadline along with submitting presentation proposals.  I published another paper.  I was grateful to see it coming out a couple of weeks ago.  Initially, I did not know if I wanted to submit this paper to the editors.  It was due March 1, 2015.  At that time, I was realizing that the hormone therapy was not working out for me.  I had to decide the next steps.  It was a stressful time.  I was an emotional wreck and feeling so horrible constantly.  Somehow I found it inside myself to submit the paper.  I figured that it was the first draft and it was pretty decent as it was my qualifying paper for my doctorate program.  I had to pass that before I could enter the dissertation proposal stage.  It was nice to see it coming out and reflecting on what has changed since March 1, 2015.

September is here!  So is Endometrial Cancer Awareness Month.  There is one thing I want emphasize.  If you believe your menstruation symptoms are different such as heavier bleeding, blood clotting, and cramps are more painful, go get yourself checked right away!  Sadly, there are many gynecologists would would tell you it's normal and that you are getting older.  Pain prescriptions would be given.  That was my experience with my first gynecologist.  She said I needed to live with it as I was getting older and gave me Naproxen Sodium 500 mg.  I did not stop there.  I kept on fighting and looking for someone else who would take a look, namely a transvaginal  and pelvic ultrasound.  My hematologist ordered for that because she was worried I was losing a lot of blood.  I have met a good number of women in the past year who spoke of worsening menstruation symptoms but they couldn't get anyone to take a look.  I met this woman who was diagnosed with stage 4.  She didn't know.  She spoke of how she told her gynecologist that she was having pelvic pains constantly even when she was not menstruating.  Her gynecologist didn't bother to order any imaging studies.  Now she has stage 4.  Her prognosis isn't looking good and she is facing some difficult treatments down the road.   

I remember I read some articles last year that spoke of how many gynecologists are not trained sufficiently to notice potential cancer symptoms, especially in younger women.  There is an ongoing belief that "below the belt" (gynecological) cancers typically happen in older, post-menopausal women.  That was true for a long time but it's now happening to younger women.  Heck, I met a 19-year-old woman who got endometrial cancer.  It's becoming the new reality.  Gynecologists continue to tell their younger patients that they are too young to have cancer.  My gynecologist said the same thing then she was flummoxed when she had to tell me it was definitely cancer.  This needs to stop.  It's becoming a harsh reality that younger women are getting gynecological cancers.  Any unusual symptom needs to be examined thoroughly rather than telling the patients to suck it up. 

The bottom line... if you believe your menstruation symptoms are atypical, please take steps to get it checked out.  Insist on imaging studies.  Don't give up.  Advocate for yourself and your health.  

Meeting the new oncologist

Last Monday, I met with Dr. Angel who is my new oncologist.  I was nervous and apprehensive.  The first two oncologists I met - Dr. Diaz-Montes and Dr. Tweed were not very good and they were rather abrasive.  Dr. Jewell was a jewel.  I did not know what to expect when I met with Dr. Angel.  Turns out Dr. Angel is indeed an angel.

After I was checked in, I was looking at the computer monitor and noticed this line of information next to my name  "ENDO CA TRANSFER OF CARE".  Endometrial cancer is like my permanent brand.  I  was curious to see what kind of surveillance plan Dr. Angel would propose because Dr. Jewell changed things last May.

I immediately liked her.  I liked how she tried to connect with me and get to know me better.  Before our appointment, she reviewed all of my records.  She asked me how I was feeling overall.  She recommended the following surveillance plan that Dr. Jewell initially started.  Pap smear plus vaginal, pelvic, and rectal exams every three months for one more year then every six months for the next two years.  For the fifth year and beyond, once a year.

She took an interest in my genetic test results and read through the report.  We agreed to have me do CA-125 tests routinely just in case.  The CA-125 tests for tumor markers of ovarian cancer and I need to get started on my routine mammograms.  The next follow-up appointment, she'll do an ultrasound to take a look at my ovaries.  She examined me and said that all the surgical incisions looked really good.  Two are now hard to notice.  I had to point those out to her.  She was surprised how small they were.  She said everything looked and felt great.

What made it a really good appointment was the quality of the sign language interpreter.  The University of Rochester Medical Center has some awesome interpreters.  It was nice to be able to live locally and know for sure I would get good interpreters unlike the experience I had in Annapolis at the Anne Arundel Medical Center.  I did have to fight with Memorial Sloan-Kettering Cancer Center in New York City to provide me with quality sign language interpreters at the beginning.  It's really nice not worrying about the interpreting services so that I can just focus on being the patient.

Rope Siriasana: Loosening My Rectus Abdominis Muscles

Tomorrow I meet with my new oncologist.  I am feeling somewhat apprehensive.  I continue to hang on to my temporary respite from doctors as I neglected to complete forms they need from me.  Last week, I had to drag my feet to the cancer center for updated blood work.  I think tomorrow's appointment will push me back into monitoring my medical needs.  I am ready nonetheless.  I have to be.  That was a nice escape for a while.

While I was working on revamping my food blog, I learned there is now a way for people to be notified via email of my new posts.  My loyal readers had been asking for this for a while.  I added a new gadget on the right side of my blog.  Go ahead and add your email address.  Happy reading!

Anyway... back to the point of this post.  Two weeks ago, I groaned when the teacher asked us for the second day in a row to do rope siriasana.  I often prefer to opt out of doing that pose.  Before my hysterectomy, I was simply too scared of doing this pose.  This is what it looks like...

The fear of this pose stemmed from a bad yoga teacher who was not certified.  She did not carefully explain the steps to me.  When I got into it, I fell on my head.  Ever since, I had this creeping dread of this particular pose.  I was able to successfully avoid doing it as much as I could for a long time.

After my hysterectomy, it seems like my teachers ask me to do this more often in the recent few months than in the past 15 years of yoga classes.  Dang.  The first of the two days two weeks ago, I went into the pose while facing my old inner fear.  I panted heavily.  While I was fighting my fear, I realized that I had this other feeling...  like this pose was extremely intense for my abdominal muscles.  I stopped after five minutes and told my teacher I was done.

When she asked me the next day to do it again, I groaned.  She asked me what was going on.  I told her.  She said she would show me step-by-step how to enter the pose safely and how to exit safely.  As for the intensity I feel in my abdomen, she asked me to focus on where specifically as she hasn't heard of anyone complaining of that issue.  Once I got the fear out of my mind, I focused on the feeling.  I was able to stay in the pose for about five minutes without panting.   I got out and told her where...  rectus abdominis (also known as the "six-pack" muscles).  She said, "Aha...  those muscles must have tightened as a result of your hysterectomy."  Remember how it took me so long to rebuild strength in those.  Now they're tight!! Agh!  She encouraged me to continue working on those muscles.  The reason why this pose feels so intense is because of the gravitational pull.  She proceeded to show me some poses that would work the same muscles with less intensity.  Those did feel good.  After the class, those muscles felt so tired.  The past two weeks, I have been focusing on working on them little by little.

My teacher showed me a book called, "Iyengar Yoga Cancer Book" by Lois Steinberg that includes some suggested poses to work on those muscles.  I wish I had known about this book when I was recovering from the surgeries but glad that it is available as a resource.

Getting Lost In This Thing Called Life

Life became so busy the past few weeks as I went through several changes on top of my already overflowing plate.  Somewhere along the way, I celebrated my 40th birthday as well which was wonderful!  I am having a wonderful 40th year so far, although very busy!  I had two publication deadlines to meet as well.  The dust  is slowly getting settled as I finally can sit down and breath.... and update this blog.

My experience with cancer has become somewhat a distant memory as it no longer rules my life.  I did not recognize that until recently.  Since then, I have been processing that realization and came up with more examples of how I have moved away from the life as a cancer patient.  My aha moment was like this...  On the morning of July 20th, I took a quick look at my schedule for the day (Wednesday) and what I needed to do at work that day.  I thought to myself, "Five meetings...oh boy."  The words "support group" under Tuesday's schedule caught my eye.  Oh crap!  I missed my cancer support group meeting!  I remember I noticed that item on the schedule the day before when I do my daily review of the schedule for the day.  Tuesday was also a busy day at work.  Then I had my weekly evening writing group with other doctorate students.  The meeting completely slipped from my mind.  Cancer was on my mind a lot before but not lately as I continue to move forward, getting lost in living my life.  I have to admit it is a nice feeling that my life no longer revolves around the big C.

This past Monday, I was reviewing my schedule for the fall semester and realized that I am teaching a course at a local college that conflicts with the support group meetings.  I will attend the one next month before the semester begins and won't be able to participate again until after the semester is over in December.  And I am okay with that.  I am actually very excited to be teaching again.

One year later, my university decided to change insurance plans again and since I no longer live in Maryland, I was no longer eligible for insurance coverage from the Maryland's marketplace.  I already purchased the new plan through my university but I was waiting for the insurance company to activate my coverage.  I was going through this gap of insurance coverage with a nonchalant attitude.  I think my friends were more stressed out than I was over the fact I had a gap of insurance coverage.  Last year, I was so stressed out about the idea of being uninsured.  I figured that I would be insured at some point and that it was a nice break from worrying about how I was going to get medical treatments.

Admittedly, I was escaping my own reality as a cancer warrior.  I was given my reality check yesterday when my new oncologist's office called to remind me that I have an appointment in a couple of weeks.  And that I need to make sure that Dr. Jewell's office sends all the imaging files over to them.  They also asked if I was insured.   I purchased my insurance plan two weeks ago and did not get stressed out over not getting my new insurance information.  "Okay, okay... I'll get all that done today," I told them.  And I did.  I have an insurance card in my hands and... imaging files are en route.  I sat last night deep in reflection.  Sometime I will have moments where I am able to forget about it all.  The reality is that I will have to be monitored for rest of my life.

This temporary respite was much needed and I appreciated that.  It's time to get my head out of the clouds and back on the ground by returning to my effective self-care plan.  First, I need to get my genetic test results figured out.  I will discuss that with Dr. Angel.  Since it appears that I may be at risk for breast cancer given the genetic test results, I am going to schedule a mammogram now that I have hit the age of 40.  Of course, I will continue with my routine follow-up appointments.  I need to schedule physical therapy because apparently I started working out too hard as soon as I got the green light.  My doctor told me I couldn't swim for a few weeks as both of my shoulders are inflammed from pushing myself to do my regular one-mile swim workouts so soon.  She said that it was rather common for people who return to their workout programs after major surgeries or medical issues.  Oy. Yada yada.  I'll get it done.

I am feeling better with each passing day.  Alas, I do notice that my stamina and level of energy is not fully restored yet.  I spoke with other cancer warriors and learn that the energy level is rarely restored. I hope to be an exception to that.  I know I have to take care of myself in the process.  Interpreting the whole day kicks my butt and makes me fall asleep by around 8 PM at night.  I love the work though.  I am tired after a day full of work, doing errands, and such.  Yet I am proud that I have been able to keep up in kickboxing, spinning, and boot camp classes as well as getting lost in a work or academic project without giving up easily.  It's just the end of day when I get really exhausted.

I continue to assess and re-assess what quality of life means to me.  I am learning along the way as I make discoveries about what I love and enjoy. Some recent discoveries: 1. I realized how much I love to write.... academically and personally.  Doing this blog has served as a good outlet for me and it is something I have grown to enjoy doing.  I will be going back to my food blog as it was something I enjoyed doing a few years ago.  I am doing some personal writing projects as well as working on various academic papers.  I am back to working on my dissertation with a renewed sense of energy.  2. I still love learning.  I learned how to do some yard work earlier this week, including how to edge, mow the lawn, and work a hedges trimmer (yay, me!).  I am also learning how to grow and take care of herbs. I have soo much herbs and I'm having fun experimenting with them in the kitchen.  3. I appreciate opportunities I get to play!  Tonight, I participated in a water-gun fight with a four-year old kid just because.  It is so good to laugh and play whenever I get a chance to do so.

EFF CANCER!

When it was decided that there would be a party for me to say EFF to cancer back in March 2015, the idea behind "Eff Cancer" did not have such a deep meaning then.  Now it has a more profound meaning for me.  Cancer truly sucks.  I feel like screaming at the top of my lungs, "EFF CANCER!" Here's why.

I remember when I first got diagnosed in January 2015, I met a few people online and heard of people who got their diagnosis around the same time.  We connected because we were new cancer warriors trying to figure out what the heck it all meant.  They had different cancers.  Two weeks later, one of them died.  Over the course of the past year, they all have died.  I am not sure if I should feel lucky or not.  This feeling of uncertainty is exactly how I felt when my company laid off two administrators during my first year of employment.  I was the new kid on the block and I still kept my job.  I remember I had a bad case of survivor guilt.  Do I feel lucky I still had my job?  Do I wonder if I would be the next to get axed?  I am still with the same company for almost eight years. That feeling has faded but came right back when additional layoffs were made last year.

Anyway... it breaks my heart every single time I hear about another cancer warrior passing on to the next realm.  This week, this world lost a wonderful cancer warrior who was battling breast cancer for six years.  She was a friend from my childhood.  I spoke with her last year asking her for her insight.  I noticed that she had cancer when she was pregnant with her son.  At that time, I was not sure if I should consider having a baby or not.  My conversation with her helped shift me towards the hysterectomy.  When I got the news of her passing, I was so sad then I got so angry for her and other cancer warriors.  Why didn't they get the chance of more time I was given?  It's not fair.  I was thinking, "EFF CANCER!"  Cancer really sucks.  I am tired of hearing about more and more lives being claimed by the big C.  Talking about it throughout the week has simmered my anger.  Going to kickboxing classes twice this week have helped me channel my anger as I visualized myself kicking the big C's arse and thinking, "Stop taking away lives!"  Doing long, advanced yoga classes settled me.  Down deep inside, I have this bugging fear that maybe I am the next one just like wondering if I would be the next one to get that dreaded pink slip.

One of the most powerful books I have ever read is The Power of Now by Eckhart Tolle.  I read it about the same time I became fascinated with Buddhist teachings.  Among many Buddhist themes that fascinate me, I love how Buddhism placed an emphasis on focusing on the present rather than the past and the future.  Just be.  Just live in the moment. And be happy with the present moment.  It was timely that I came across Tolle's book when I was starting my Buddhist readings.  I think our society places so much emphasis on the past and future, ignoring the present.  The past and future are hugely influential on what one does in the present moment.  It is so hard to deprogram myself from thinking / acting as if the future or the past is in this specific moment.  Ironically, having cancer has made the deprogramming much easier.  I am given this moment and I am going to roll with it.  I don't want to worry about the future.  I do not want to wonder when the big C would take me next.  I am going to live my life focusing on each present moment.

Some of my friends asked me for the update on my genetic test results and Dr. Jewell's recommendations.  Truthfully, I temporarily put the genetic test results aside so I can focus what I needed to do in the present.  I had a draft manuscript due to the editors June 1st.  I had plenty of work on my plate. I had a wedding celebration to attend.  I chose to focus on those things because those were happening in my present time.  I still need to live my life and not let the genetic test results hinder me.  Now that the draft manuscript has been submitted and I enjoyed the wedding celebration, I have some breathing room.  I will be following up with Dr. Jewell to see what the genetic team at Memorial Sloan-Kettering Cancer Center told her since I haven't heard anything.  When I get that information from them, I am going to put them aside until I meet with my new oncologist in August.  Then I'll go from there.  Remember, having a cancer gene does not mean you have cancer.  It just elevates your risk of getting cancer.  That is one critical piece of information that has been keeping me sane.

For now, I shall just savor the sweet moments in the present.  Like waking up this morning to Chocolate's head resting on my shoulder.  And discovering how amazing my cilantro pesto is, which was a fun experiment in the kitchen this week (I ended up with too much cilantro- is that even such a thing?).  And laughters with new friends.  Onward.

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.

Genetic counseling and testing

I had genetic testing done a few days ago.  My first questions when I got diagnosed with endometrial cancer were: "Why do I have it?" and "What caused it?"  Maybe I will never know the actual answer. Several doctors I saw in the past year highly recommended genetic testing commenting that I was too young to get endometrial cancer.  It is more typical for women over the age of 50 to get endometrial cancer.  I remember I had a hard time finding women who got this cancer before their menopause.  I found a few.  We all ask why.

The genetic counselor was very kind but she overwhelmed me a tad with a ton of information for me to process.  I decided to go ahead with the genetic testing primarily because it would be good to find out whether it was a hereditary cancer or sporadic cancer.  There are three kinds of cancers--- hereditary, familial, or sporadic.  Hereditary cancer emerges as a result of a gene mutation being passed down.  Familial cancer, which typically involves several people in the family with the same kind of cancer, could be a combination of genetic and environmental factors.  Sporadic cancer just emerges by chance.  It is clear that mine was not familial because no one in my family had endometrial cancer.  It's either hereditary or sporadic.  If it's sporadic then I will probably never know why I got it.  It could be the environment.  People often talk about how our environment as well as what is in our food is toxic and there has been an exponential increase of people with cancer.

The genetic counselor reviewed the list of risk factors that could imply the presence of hereditary cancer: multiple, young, or rare.  Multiple: at least two persons in the family having similar cancers. Young: anyone who had either breast, colorectal, or uterine cancer at age 50 or younger.  Rare: any person who has the following rare occurrences at any age-- ovarian cancer, male breast cancer, triple-negative breast cancer, colorectal cancer with Lynch Syndrome, uterine cancer with abnormal Lynch syndrome, or 10+ gastrointestinal polyps.  So far, I fall under the category of Young.  I got diagnosed with uterine cancer at 38.  She emphasized that I was very young to get this type of cancer.  Genetic testing could confirm whether I have Lynch Syndrome which would put me in the Rare category. Those who have hereditary cancers have their lifetime cancer risks increase significantly.  Hence the importance of genetic testing and developing a prevention plan for life.

The genetic counselor showed me a list of genes that impact eight important cancer types: breast, ovarian, colorectal, uterine, melanoma, pancreatic, stomach, and prostate.  There are currently at least 25 identified gene mutations.  They are still trying to see if there are more mutations to be discovered. Here's the list of identified gene mutations (I boldfaced the ones that leads to uterine cancer):

BRCA 1/BRCA 2
MLH1
MSH2
MSH6
PMS2
EPCAM
APC
MUTYH Biallelic
MUTYH Monoallelic
CDKN2A (p16INK4a)
CDKN2A (p14ARF)
CDK4
TP53
PTEN
STK11
CDH1
BMPR1A
SMAD4
PALB2
CHEK2
ATM
NBN
BARD1
BRIP1
RAD51C
RAD51D

I will be tested for all cancer genes.  Results come 4-6 weeks after insurance approval.  There are three possible outcomes: positive result, negative result, and uncertain variant.  A positive result means I do have a gene mutation and a special medical management will be developed to monitor and prevent cancer.  A negative result means there's no increased risk and I can be screened like the general population meaning start mammograms at age 40 and colonoscopy at age 50 along with my existing surveillance plan for the endometrial cancer.   The uncertain variant result means that a mutation was found in the DNA but it is not known if the change would cause cancer.  Medical management schedule will be similar to the negative result.  Additionally, my DNA sample would be kept at the lab indefinitely.  If they determine the mutation in the DNA is a new cancer gene, they will notify me regardless of when it is.

They told me before I came that they won't be collecting my blood at this particular location but my saliva sample.  I thought they would be swabbing my cheek as seen on television.  Nope.  I was surprised to find out that I had to spit in a test tube.  I had to keep on spitting until the sample reached the line on the test tube.  The layer of bubbles was not counted.  Believe me, it was hard to fill up that tube.  I was instructed not to eat anything, take mints, chew gums, or drink anything other than water two hours prior to the test.  Water was okay for up until 30 minutes prior.  I had a dry mouth literally when it was time to collect my spit.  I had to make chewing motions with my mouth to build up the saliva.  My mouth was tired.  They gave me a couple of breaks.  I was able to fill up that tube in about ten minutes.  Phew.

My tube of spit was sent to the lab in Utah.  They will then pursue insurance approval before testing. the sample.  The genetic counselor said that sometime the insurance companies refuse to give approval.  They will then file an appeal proving that it is medically necessary given the fact I had endometrial cancer before the age of 50 in hopes that the decision would be overturned.  The test costs $4500.  Now it's a waiting game.

Hysterectomy: It ain't peachy but it isn't life-ending

HysterSisters, the organization dedicated to education of the surgery and recovery, sent me an email this morning with my one-year checkpoint.  Yep.  It's been a year since my hysterectomy.  I was walking through the cancer center at a local hospital last night reflecting.  Tears came to my eyes as I remembered the process I went through to make the decision to have the surgery.  The recovery process wasn't a walk in the park either.

Hysterectomy: Hustera- womb/ ectomy-surgical removal.  When I first researched the surgery after learning it was the best option to remove the cancer, I learned that in the old days it was believed that hysterics came from a wandering or a troubled uterus.  In the 19th century, hysterectomy was the treatment for hysteria.  Of course this isn't true nowadays but doctors are still quick to prescribe hysterectomy as the answer to many female-related problems.

In my initial research, I came across an upsetting video made by an extremist organization that is very against hysterectomies.  It was their video that made me break down a few days after my first gynecologic oncology appointment.  It was their video that made me feel that maybe it's better to let the cancer kill me before letting any medical professional come close to my uterus.

I do agree with the organization's concern that doctors are quick to do hysterectomies.  It has become the routine treatment for different female-related issues just like they did in the 19th century to treat hysteria!  HysterSisters also supports the belief that hysterectomy is not always the best option.  It is a major surgery and as with any major surgeries, there are risks.  In the HysterSisters' literature, they suggest information on alternative treatments for different conditions and diseases that many gynecologists might be too quick to skip to surgery when it should be the last resort.  I remember reading their information and looked under cancer.  Unfortunately, hysterectomy is the only treatment for cancer.  There are no optimal alternatives.  That was difficult for me to swallow.  Once I accepted that surgery was the best route to prolong my life, the very idea of the surgery affected my psyche.  I spoke with women who had the surgery before menopause and learned that many of them do go on to have healthy lives.  A big plus was not having menstrual cramps or menstruation.  I learned that their sexuality was not affected.  For those who had ovaries removed, there was a period of adjustment.  A friend who had the surgery told me that it became more about healing the mind not just the body.  The idea of the surgery can easily mess with a woman's head.  Heck, it's the reproductive system as well as the sexual parts that have to go.  It was something that I couldn't let go of... I was okay with the idea of doctors taking my breasts away or other parts of the body if it was necessary.  BUT my reproductive system... no, no, no!!!

HysterSisters was a wonderful source of support leading up to the surgery and during the recovery progress.  I established a profile with them which included the date of my surgery and the method.  There are several ways to do a hysterectomy.  Mine was the daVinci method with removal of fallopian tubes, uterus, and cervix via the vagina.  I was put in a support group of women who had the surgery the same week I did.  We connected on our recovery process.  It was so helpful to know I was not alone when I was trying to understand parts of my recovery.  We talked on a daily basis for about two months then communications slowly stopped.  The support group members pretty much have gone into our separate ways as we have healed from our surgeries.  HysterSisters also sent me regular emails with checkpoints.  I had one each week then it became once a month up until six months.  Then I didn't hear from them again until this morning.

"A year is behind you, and the anniversary of your surgery is here. We hope that during the past year you have been able to concentrate on your health and find new ways to enjoy life, re-framing it with the joy of life's blessings alongside the challenges you've faced."

Now that the year has passed and I have greater understanding of the surgery, I find that some of that organization's claims are not valid.  It was time for me to watch the video again and dissect it further. It was reassuring to see how far I have come.  I couldn't handle watching it last year.  Today, I am able to watch it and disagree.  I think it is about finding the right surgeon and verifying that they have done a good number of this type of surgery.  As with any surgery, there are risks.  I suffered with one of the rare risks- infection that haunted me for so long.  I am listing their claims from the video and my responses.  This is a post I wish I had access to while trying to decide if the surgery was the best route for me.  Fortunately, I had one dear friend who had hysterectomy done before menopause and she was willing to tell me A to Z, answering every single one of my question.  Hysterectomy is a private surgery for many but how do we better prepare for other women who need it if there's not enough openess?

1. The uterus lies in between the bladder and the bowel.  Thus there will be a loss of control of urination and bowel movements, or even possibly chronic constipation.  Bladder and urinary problems are common after the surgery.  Without an uterus in place, the bowel can bulge down creating a rectocele which is ballooning of the bowel into the vagina.

This was one of the things that scared me but after talking with women who had the surgery, this is generally not true.  Yes there are some cases where women are affected by adhesions from the surgery.  They do have repair surgeries to address the issues.  Those issues are very rare.  That's why women are strongly encouraged to follow the recovery guidelines to the letter.  I was told to do my Kegel and pelvic floor exercises as well to help with rebuilding of muscles in that area.   I was frustrated that I couldn't do much for the first six weeks following the surgery but it was to ensure that I don't have any problems such as those.  Those in my HysterSisters group had some problems because they pushed themselves too soon.  

As for constipation, I had to deal with those after each of three surgeries I had last year but that's from the anesthesia and pain medications.  I am pretty regular.  Urinary tract infection is a common infection immediately following the surgery.  I had that in April last year which was treated with antibiotics.  I was advised to take cranberry supplement to help with the recovery process.  I am happy to report that everything is working quite well.  

2. The skeletal structure would be affected since ligaments would be severed in the removal of the uterus.  Essentially, the rib cage will fall onto the hip bones compressing the spine.  Thus the woman would lose the 'waist'.

So far I still have my waist.  I guess that's a good thing, ha!  My rib cage hasn't fallen.  My spine isn't compressed.  Yes, there were some discomfort and soreness in the back, hips, and pelvis after the surgery.  I was given a list of exercises to help re-build strength in those areas.  Yoga has been a godsend.

3. Because the nerves are severed, sensation would be lost in the vagina, clitoris, labia, and nipples.

This was a concern of mine but after talking with other women, I learned this is not true.  I can still feel sensation.  Many women report that sex is much more pleasurable after the surgery.  I don't understand how nipples come into the claim here because those are in a different part of the body.  

4. Women are unable to walk and sit because nerves are severed which causes a searing pain down the buttock through the knees.

I still love to walk a lot.  I still love to hike.  I sit a lot for work and academic work (unfortunately).  I am tempted to buy one of those desks with an attached treadmill.  Yes, it was hard to sit after the surgery because there was so much pain in that area.  I had a pillow to sit on.  It didn't help that I had an infection afterwards which made it harder to sit.  Now that all of that is in the past, I do feel comfortable.  I don't have any pain when I walk or sit.

5. Uterine orgasms would be gone forever.  (But later on in the video, they said that it will be missed by women who had uterine orgasms before the surgery).

This continues to be a topic of interest to me.  The female orgasm is a complicated one.  I think it's an individual experience.  Not every woman has the same experience.  I spoke with women who had the surgery.  I spoke with sexual experts.  They say that the orgasms begin within the clitoris and/or the vagina which cause the pelvic muscles to contract.  Women who had the surgery had the uterus removed but not their pelvic muscles.  Many women I spoke with say that it takes time for them to explore sexually to feel comfortable again but sex is usually much better after the surgery.

6. Sexual feeling will be lost.

I think this depends on whether the ovaries are removed.  It is true for many menopausal women to have sexual changes when menstruation stops.  There was a woman in my HysterSisters group who had lost her sexual feelings.  I'm not sure why but this is rare.  Later on in the process, she admitted that she had a bad surgeon who also caused other complications for her.  Dr. Jewell, who I ended up choosing and trusted to do my hysterectomy, assured me again and again that I would be fine sexually.  I do still have the drive.  It boils down to finding the right partner who is willing to explore with me.  We'll see what's in the store for me in the future. 

6.  Ovaries produce hormones for the entire lifetime.  75% of women who undergo a hysterectomy also under go an oophorectomy (removal of ovaries).  The medical term of removal of gonads (ovaries/ testes) is castration.

This is sadly true.  I was surprised to meet gynecologists who thought it was okay to remove ovaries as well.  There are significant risks involved.  The first two oncologists I met were quick to say that ovaries would have to go as well.  The third one, Dr. Jewell, said that if the ovaries are fine then she wouldn't want to remove them.  I tested negative for ovarian cancer.  She warned me on the day of the surgery that if the ovaries looked bad, she would have to remove them.  The goal was to keep at least one.  Losing ovaries mean a 50% overall higher risk of mortality along with numerous health risks including heart disease, osteoporosis, and breast cancer.  Ovaries also contribute to the sexual health.  Oophorectomy is essentially castration.  I have been criticized for being stubborn about keeping my ovaries.  Have you ever heard of men getting their balls cut off on a regular basis?  No.  It's a no-no.  That should be applied to ovaries.   I understand there are unique circumstances that actually require removal of ovaries and testes.  I have been a strong advocate since then for women to fight for their ovaries or at least one as many women were rushed into the surgery without having any time to research the consequences of losing their ovaries. A previous post discussed the importance of keeping ovaries: http://naomicancerjourney.blogspot.com/2015_09_01_archive.html.

7. Hysterectomy that involves removal of uterus and cervix vaginally results into a gap where the cervix once was.  This hole has to be sewn shut creating a closed pocket and a shortened vagina.

This was one of the things that scared me.  A shortened vagina!?!  This is possible that this was true in the past but surgical techniques have improved a lot since then. I do not have a shortened vagina. It feels pretty much the same.  I used to have a vaginal canal.  Now it's called a vaginal cuff.  Dr. Jewell sewed the cuff at the end where the cervix once was.  It is different finding no cervical stump at the end but I've gotten used to that.  Everything else in the vagina remains intact.

8.  Sometime the sutures do not hold resulting into a vaginal prolapse out of the vaginal opening.  This is basically like a turned out pocket.

I grilled Dr. Jewell about this before my surgery.  She said that this rarely happens.   It could happen because recovery guidelines were not followed to the letter.  Even if this does happen, repair surgeries are done.  I also believe that it depends on the surgeon to make sure the vaginal cuff is closed and secured correctly.

9. Laparoscopic hysterectomy takes longer than other hysterectomy surgeries because the abdomen is inflated with gas creating stress on the body.

True.  My abdomen was blown up to be about two times bigger than a pregnant woman who reached full-term (40 weeks).  Recovering from the gas inflation was no easy feat.  I was gassy for days.  I felt sore in my abdomen as if I was trying to catch my breath.  I had a swollen belly for at least six months.  However, the benefits of doing a robotic-assisted laparoscopic hysterectomy outweigh the cons.  The other route is total abdominal hysterectomy which means the abdomen is cut open.  A longer hospital stay is required.  Recovery is much longer and harder.  Today I have five small incisions across my abdomen from the daVinci robotic surgery.  Two of them are actually hard to spot now.  

10. Hysterectomy causes the following: loss of vitality, joint pain, profound fatigue, personality change, loss of stamina, loss of short term memory, loss of ability to socialize, insomnia, suicidal thoughts, unable to maintain previous employment, loss of maternal feeling, and loss of ability to maintain activity in the home.

As with any major surgery, the loss of vitality is evident.  It takes time for the person to recover from the surgery.  I was tired all the time and sleeping a lot for weeks.  It's not just the hysterectomy itself.  When I was recovering from the infection, I was also tired.  When all of my medical issues were resolved (recovered from the hysterectomy and the infection was gone), I was feeling pretty great.  I have my stamina back.  I feel great today.  I am active.  I am working out.  I am working with a renewed sense of energy again.  My mind is alert. I'm eager and passionate to enjoy my life.  This evening I had a great yoga class.  I was able to do a backbend, handstand, headstand, and shoulderstand just fine.  

No joint pains here.  It's about maintaining an active lifestyle.  

Personality change... I do not feel the hysterectomy changed my personality.  I am still caring, funny, adventurous, dedicated, determined, and nerdy.  For anyone to go through a difficult disease, there is a changed perspective on life.  I had cancer and that changed my view on many matters.  The essence of Naomi remains though.  

My memory remains intact.  I have a darn good memory.  I am more nervous about the aging effects on my memory though! I'm approaching age 40! Dang!

I still socialize.  I enjoy my time with friends.  I enjoy connecting with people.  

Sleeping continues to be a challenge for me because I still can't get my busy mind to quiet down!  It was an issue before my hysterectomy and still is an issue.  In fact I miss the first few weeks after the surgery because I was really sleeping!  I slept so much because I was actually tired!  I think insomnia is caused by various factors and it is irrational to make hysterectomy the sole cause.  

Suicidal thoughts come from the the feeling of despair.  I don't think the surgery causes it.  Like I said earlier, the surgery does mess with the woman's mind.  It's so hard to go through a major change like that.  Loss of reproductive ability can hit a woman so hard especially if the woman is still of a child-bearing age.  I think the real issue lies with how the woman choose to respond.  Yes I had initial struggles with the surgery.  I choose to respond in a way that I am blessed I am still alive and that I am in remission.  I think it's an individual choice to be happy.  I choose to be happy.   The cancer taught me that quality life is even more important than ever so I made a lot of changes in my life to ensure a quality life and I'm in a good place right now.  

I still have my job!  I am still doing my freelance work as well.  It WAS difficult to return to work which is true for any major surgery.  It took me a few weeks to get back on the horse, so to speak.  I love what I do for living.  I think this is tied to attitude towards the surgery.  If the woman is depressed and lifeless, then a job will be lost.

I have never been a biological mother of a human child.  But... as I learned, I do have maternal instinct.  I discussed this in depth in a previous post: http://naomicancerjourney.blogspot.com/2015/04/emotional-recovery.html.  I am a mom of a furkid, Chocolate.  I am very maternal with him.  That was true before the hysterectomy and still the same afterwards.  

Again, activity in the home is tied to attitude.  I still do my own thing daily.  I am grateful that now that I am recovered from the surgery and infection, there's so much more I can do now! 

That video truthfully terrified me.  It was through research and experience that made me learn that hysterectomy is a difficult surgery but life doesn't have to be different afterwards.  During my research, I did contact this organization asking what their recommendations are for women with cancer.  They said there are gynecologic oncologists that can help me stay on hormone therapy for life just to keep my uterus, cervix, and tubes.  I did explore that avenue.  Hormone therapy was the pits!  I couldn't imagine the rest of my life with daily nosebleeds, being out of breath from walking Chocolate around the block, continually gaining weight/ feeling bloated,  loss of appetite, feeling dehydrated, unpredictable mood swings, and ultimately developing diabetes.   Yes, it sucked that I had to undergo the hysterectomy at a young age.  It was a difficult experience.  On top of it all, I had to deal with a rare side effect of the surgery-- the infection!!  The infection developed because my vaginal wall was perforated during the surgery which was also rare.  Alas, I just bought myself a lot more mileage in life... quality life!  No synthetic hormones!  Cancer cells are gone.

Tonight I found comfort in ending the yoga class with savasana (corpse pose).  I placed a sandbag on the top of my pelvis.  This used to be a favorite thing for me before the hysterectomy.  I haven't done it since then.  I decided it was fitting that I gave it another try on the anniversary of the surgery.  It was so comfortable and I got lost in my meditation.  Life is good.  Onward.

Celebrations

It's been a while...

It is difficult to write when I am traveling and dealing with unexpected stuff that come up.  Life is always full of curveballs.  Whether it is cancer or something else.  I just gotta keep on rolling with it.  I am truly blessed that I am still alive and kickin' to be able to face life head on.  Each day comes with a lesson, big or small.  I keep on learning each day.

I saw my doctor yesterday.  I was nervous that I might have to face the big bad monster, "Silver Nitrate," once again.   Nope.  The wound has finally healed.  That little stubborn part is merely a scrape now and will heal in couple of weeks.  Whew.  Finally.  The infection began haunting me mid-April last year.  I joked with a few friends that because the wound was in a wet, dark place, I might heal faster if I just went to live in a nudist colony for a while. There's no need for that now.  Almost a year later, I am done.  Phew.  Earlier this week, I got news that I won the last one of five appeals against my insurance company.  All the bills related to all of my surgeries and treatments in 2015 have been closed forever.  Now I can move forward.

As for the Lynch Syndrome question... genetic testing was done on the polyps found in my uterus by Memorial Sloan Kettering Cancer Center.  My doctor explained what was done: "They did special stains on your initial pathology to look for Lynch using a technique called immunohistochemistry.  This test looks for expression of four proteins that if missing can mean you have Lynch.  In your case the proteins were all expressed.  The option after that, if you want, is to do formal genetic testing where your DNA is checked for mutations that could be sometimes be missed despite the normal expression of the proteins."

I decided that I would like to meet with the genetic counselor.  In the past year, several doctors highly recommended genetic testing to make sure I don't have any further risks.  If I do, I can take action sooner.  While I was trying to decide, I was stuck on the fence-- ignorance can be bliss.  At the same time, I don't want the ignorance to kill me.  The bigger question is... will my insurance pay for the genetic testing?  Maybe not.  It is worthwhile to explore that avenue.

While I was dealing with recovering from the hysterectomy and fighting the post-surgical infection, I was rushing to meet deadlines that the editors gave me.  The first draft of the manuscript was actually submitted in May 2014.  I forgot all about it.  In May 2015, the editors said it was time to begin the editing stage.  It was a back-and-forth process as I worked on the paper.  At one point, my co-author got injured and hospitalized that she couldn't do anything.  I was on pain medication.  I decided to get off the pain medication just to write and edit while I was in pain.  What a wild ride that was.  The final draft was submitted at the end of November.  I remember feeling relieved.  I wouldn't recommend working on a publishing a paper while dealing with all the medical stuff but... I made it.  It was an opportunity that I couldn't pass up.  My very first research study in print.  The book was released last month.  I feel damn good.

Life has its ups and downs constantly.  I am just moving forward.  I dealt with cancer, the infection, and waiting what felt like forever for the wound (hole) to heal.  It is time to see what the next chapter is all about.  I do not know what lies ahead.  What I have survived so far keeps on making me stronger for what is coming ahead.

   

Flashbacks

Yesterday, I went to see a new doctor about my wound.  I left the office with flashbacks of the past year.  The agonizing pain and the fear of cancer claiming my life.  After the visit, my friend tried to make sure I could lay down comfortably with my legs propped up.  She asked me if I had a chance to cry.  I said that I really wanted to cry but just couldn't.  I couldn't cry the whole day yesterday.  It felt like I have a full cup of tears ready somewhere behind my eyelids to runneth over.  But nothing has been spilled yet.

I like my doctor.  He's better than the overzealous one in Maryland.  He was open and honest.  He spent a good amount of time with me to discuss everything and plus treat the wound.  Upon examining the wound (aka the former hole), he found that the innermost edge has not fully healed.  The rest of it healed nicely.  He decided to apply silver nitrate to that edge.  That burnt!  I was in shock afterwards by how it hurt that I became nauseous and lightheaded.  They gave me pain medication to take orally on the spot.  I also have two types of ointment to apply to the wound to help minimize the pain and promote healing.  I am back in four weeks to see if it worked.  Upon reading the forum that I used to help me heal from the surgery last October, I learn that some people need just one silver nitrate treatment while some others need several rounds.  Ugh.

I noticed that one of the forms I was filling out had a checklist to be completed by the doctor.  The checklist was a list of red flags for the Lynch Syndrome.  I had one red flag...  endometrial cancer before the age of 50.  The doctor explained that the Lynch Syndrome is a type of genetic condition that has a high risk of colon cancer.  Those with Lynch Syndrome also has high risk of getting endometrial cancer- this is very common.  They also have risk of getting other cancers: ovarian, stomach, small intestine, liver, urinary, brain, and skin.  He asked if I had genetic testing done.  Doctor after doctor the past year has asked me the same.  Dr. Diaz-Montes said her pathologist did genetic testing of my cancer cells and that I tested negative.  Dr. Jewell said genetic testing was done as well and it was negative.  What remains unclear at this time is what type of genetic testing was done and what was specifically tested.  The doctor yesterday asked if I was tested for the Lynch syndrome.  I did not know.  He had me sign a release form for Memorial Sloan Kettering Cancer Center to send my records to him to review.  If I haven't been tested for Lynch Syndrome, then I will be tested for that.

In the support group meeting last week, someone was talking about how it feels like there's always something else.  I could relate to that yesterday.  I started thinking, "What if...",  "What should I do?", "What is gonna happen to me?"  Yada yada.  I decided that I couldn't allow the flashbacks of fearing for the worse consume me.  I laid down and meditated for about an hour.  The only thing I can do at this time is to focus on helping the wound heal and continue living my life.  I will hear back from the doctor about the next steps and deal with one thing at a time.

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.

Gynecologic Oncology

Skin healing is tricky, especially with the hole I had.  I learned yesterday one small part of the wound has torn open.  I noticed that I started to bleed last Wednesday then I was draining again.  It was hurting to sit.  I immediately treated it with an antibiotic ointment.  The draining stopped and the pain that came with sitting slowly went away.  I have been conscious about the type of chairs I pick the past few days.  The person who examined the wound yesterday gave me a lecture about how I need to keep on applying ointment on it and sit on my little travel pillow if any seat feels uncomfortable.  I got annoyed and said, "I AM DONE!"  She said that for something so tender like the scar especially in that area, I need to keep up to ensure full recovery.  So... use antibiotic ointment for one week then it's back to alternating between castor oil and comfrey salve applications for a good while along with more epsom salt baths.  She also reminded me that I went from not working out to working out seven days a week.  I need to be tender to that part of my body and be a bit more patient.  Okay, I can do that.  I am grateful that I have been able to return to my active lifestyle though.  My energy levels are returning.  I just hope that the wound is 100% better soon!

Last night I had a conversation with a guy who has been working in the field of medicine for a long time.  He was curious about why I was going to New York City today.  I told him I was going back for my follow-up appointment.  He asked why I didn't find a local oncologist yet.  I explained that it's hard for me to find a gynecologic oncologist that I can trust.  I was so happy I found Dr. Jewell so I feel really loyal to her.  He suggested that I could ask her if she had recommendations for a local gynecologic oncologist for me to do my follow-up vistis.  I will be doing that when I see her.  I told him about how gynecologic oncologists are different from other oncologists.  Gynecologic oncologists begin training in obstetrics and gynecology.  Their four-year residency is in obstetrics and gynecology as well.  If they want to specialize in gynecologic oncology, then they need to get additional training.  Through my informal research the past year, I have learned that type and length of training in gynecologic oncology vary.  Oncologists, on the other hand, train in oncology and then do residency in oncology.  The guy I was talking with was surprised by this tidbit of information.  The inconsistency in training and experience impact how gynecologic cancer patients are treated.  I explained further that I have met women whose gynecologic oncologists do not require them to follow the typical surveillance schedule when the cancer is in remission.  The typical surveillance schedule: first two years- every three months.  The next two years- every six months.  Fifth year and beyond: every year.  I have spoke with women whose gynecologic oncologists told them not to come back for two years after the cancer has been treated.  I met one woman whose gynecologic oncologist told her that since her reproductive system was out, she was fine and didn't need to come back for tests for the rest of her life.  Some gynecologic oncologists don't do pap smears once the cervix has been removed.  Pap smears are needed to  check for vaginal and vulvar cancers.  One of the women who did not get checked for two years did have the cancer come back and it has metastasized.  Scary.  Yes, the tests are annoying.   And going every three months feels too much.  I do it because it's better safe than sorry.  At the end of the conversation, he asked me which medical center I was going to in New York City.  I said, "Memorial Sloan Kettering Cancer Center."  He immediately understood why I am not ready to switch gynecologic oncologists just yet stating that they do great work there.  Yep.

Since I just moved and am getting settled in my new city, I wasn't ready to find a new gynecologic oncologist this soon.  I will begin by asking Dr. Jewell if she knows of anyone qualified here.  Next, I will research all the gynecologic oncologists here, learning about their training and experience.   Then I will find out their recommended surveillance schedule and procedure to see if they would be able to pick up on what Dr. Jewell started.