Doing nothing is still a choice

Let me first begin with a metaphor... it snowed during the night.  Chocolate, native to Hawaii, hates snow.  He rarely surprises me by playing happily in the snow.  This morning I took him out.  Whenever there's fresh snow on the ground, I usually put on his coat and booties and let him walk leash-free.  I want him to have control in deciding where to go in the snowy land.  He peed twice.  I was walking down the street following our usual route when I realized he was not keeping up.  I turned around and I see him pausing in the middle of the sidewalk.  He was visibly uncomfortable with the snow.  I asked him if he wanted to come with me.  He stood there thinking about what he wanted to do then he turned back.  He was running back home.  I turned back and followed him.  He was happily waiting by the door.  He had made the choice not to poop.  What it means for him... he has to deal with the consequences that come with that choice.  He'll hold until later this morning or when he tells me he needs to go just to ensure he's warm and comfortable indoors.

The point is.. only we can make our own choices and we are products of our own choices.  Each choice comes with consequences.  Consequences can be either good and bad.  That's the simple truth.

As I am approaching the two-year mark since I got that phone call telling me I had cancer (January 15th), I am reminded of the second appointment I had with Dr. Diaz-Montes with an interpreter.  After I gained better understanding about my treatment options, I asked how much time I had left if I did nothing.  The interpreter was baffled and asked me, "Do I voice that?"  Duh.  Yes.   I could see she struggled because it was against her own value system.  She proceeded to voice my question.  Dr. Diaz-Montes was shocked.  Not surprising.  After all, she is in the business of saving lives.  After Dr. Diaz-Montes regained her composure, she said that if I did nothing I had two years to live.  I processed this.  Dr. Diaz-Montes insisted, "Don't do nothing!"  I said that I had to consider ALL the options and that doing nothing was still an option.

Treatment options include chemotherapy, radiation, surgery, hormone therapy, and medications.  Those treatment options are not guarantees.  Oncologists use experiences with previous patients to help them establish the prognosis for future patients.  Remember as I said in an earlier post (http://naomicancerjourney.blogspot.com/2015/03/cured-or-not.html), there's no cure for cancer.  It can be controlled.  Sometime the cancer gets to the point that it cannot be controlled anymore.

Why did I consider doing nothing as one of my possible options?  I had read the pros and cons of each treatment option.  I have spoken with cancer survivors who said that if they had to do it all over again, they would have opted not to do anything.  Surgeries, chemotherapy, and radiations messed them up so much that they felt they missed out on having the quality life.  And they struggle with the aftermath up to this day.  While I am fortunate that my cancer was detected very early preventing the need for chemotherapy and radiation, I still have some lingering aftermath from everything I went through.  Those are fading slowly though.  The process I went through to control my cancer was definitely not peachy.

I was talking with a friend the other day telling him that when it is my time to go, it is my time to go.  I am not scared.  He got really upset by this.  I think that the cancer helped me feel at peace about death.  I remember when I got the call, I was freaking out thinking about death.  In reality, death is a natural part of the life cycle.  

I recently learned of someone who made the choice to do nothing to control his cancer.  A good number of people were upset with his choice.   Ultimately, it was HIS choice to make.  He realized that his cancer was too aggressive and he wanted to spend his final days enjoying life and appreciating his connections.  Remember, by choosing not to fight the cancer is not exactly the same as giving up.  It is not an act of resignation.  It is a choice to maximize on life as much as possible with the remaining time he had. I had to wrestle with this choice myself.  I thought about two options.  I could use the remaining two years I had to travel and see more of the world.  I could write more.  I could see all of my favorite people again.   Or I could go through treatments to control the cancer.  Those two paths were significantly different.  Our choices pave our paths in life and we deal with the good and bad consequences as we progress in our own journeys.

Now that the two-year mark is approaching, I am deep in my own introspection.  People often ask me if I regret going through what I did.  Based on my studies in Buddhism, life should not be of regrets.  Just roll with your choices and embrace the lessons that come with them.  The answer is I do not regret anything I went through the past two years.  It sucked, yes.  There were bad and good consequences which I accepted as part of the path I have paved for myself.  The bottom line, I am eternally grateful that I had the freedom to make informed choices for myself.  

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.