Two Years of Remission

I have been so engrossed in my dissertation work this semester that I almost forgot about the April 14th anniversary date.  Fellow cancer survivors highly recommend that this anniversary date is observed by doing something great.  One survivor I know of leaves the country on the anniversary date.  What a grand idea! :-)   I did that last year.  This year... I decided to stay in the country since I have some trips coming up.   I found this quaint bed n breakfast place out of town to chill out.  I also came here to write.  Yes, continue writing my dissertation proposal.  This Ph.D. life= no life! *grin* The proposal defense date is fast approaching!  Alas, I figured that since I sorely missed blogging, I would give myself a break and blog on this special date.

It seems so surreal that two years have passed.   So much has happened since I said farewell to the cancer.  Many happenings.  Many changes.  Cancer can come and go just like that throwing one's life off balance and then...  survivors somehow just move forward... continuing to make cancer a more distant memory. 

I just got over a bad case of viral bug that had me sick for about nine days.  That was the longest I have been sick since the cancer and post-surgical infections.  I was so frustrated because it was taking my time away from my dissertation proposal.  It was also like a trigger for me.  I did not choose to be sick and bedridden for so long that year.  I was becoming increasingly anxious that I did not get better after a couple of days.  I wanted to send my committee an updated proposal that would not require any major revisions before my defense date.  I did not.  The time in bed gave me a chance to rest, recover, and reflect.  I think I am hard on myself with the dissertation work.  It felt like the prospect of getting my doctorate was yanked out of my reach when I got cancer.  When I got back on track, I realized that I wanted a completely new topic focusing on medical interpreting and cancer.   Finding the focus took time.  I finally have my focus and know where I am going with this.  The topic is fun and exciting.  Feeling the pressure after presenting my past research studies at a recent international research symposium and the defense date approaching, I pushed myself to work on my proposal.  I had been giving up social events so that I can get this thing done with.  It was so important to me that I finish.  The Ph.D. dream is something that I am desperately holding on to and do not want to let go of.  Being sick made me realize that I need to slow down a bit... and enjoy life a bit.   If I take a couple days longer to finish my proposal, it's okay.   I WILL finish this proposal.  I feel stressed out partly because if I don't defend my proposal this semester, I have to wait until the fall semester to defend.  I really want to start collecting data over the summer rather than waiting.  

Truth be told, it was awesome watching a lot of Netflix while dealing with this bug.  I was so SICK of Netflix after a couple of months two years ago and I didn't mind this time around but I want to do my own thing again.  I am back on the Ph.D. track as I appreciate my continuing remission status.

Yesterday was the first day I ventured out to see people after being sick.  I attended my first support group gathering for Deaf women cancer survivors.  It was a nice kick-off to my two-year celebration.  They have different activities every time they meet.  Last night: art therapy.  That was a nice release from pounding away on the keyboard.  One woman said that life after cancer is about maintaining faith and living your life.  True that.  

Another Cancer Patient's Perspective

I came across this wonderful blog post that beautifully summed up the cancer journey.  The writer is an oncology nurse who got diagnosed with cancer herself and she finally understood what it means to be diagnosed with cancer and to fight.

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

While she and I had different rides with cancer but the feeling is definitely mutual.  Simply put, any cancer journey is multilayered and complicated.  It is an ongoing process even after reaching remission. 

Two years have passed... and I'm still here

January 15th came and went.  It marked two years since I got my cancer diagnosis.  I was happily on my first real vacation in four years.  Sure I travel quite a bit but it was always for work, school, or I was going on a trip and still needed to work.  This trip gave me a chance to really unplug and leave my laptop behind.  I went on a yoga retreat at a remote beach location in Mexico.  I only brought my books and journal with me.  I read so much on that trip.  I meditated several times each day.  I did a lot of yoga.  I came back feeling really rejuvenated.  It was freeing to leave the country without worrying that I might need medical attention right away.

The host of this retreat said that we could take periods of silence to focus on ourselves.  I decided to make January 15th my day of silence to observe the two-year mark.  It was sensitive for me because like my last post said, doing nothing was an option I considered.  I woke up that morning loving the smell of the ocean.  I was reflecting that if I had done nothing, I might not be on that trip.  I may be nearing the end of my life.  I'm not sure what that end would have looked like but I certainly do not want to try to imagine it at all.  I'm here and that is what matters the most.

Two years ago... after I got the call,  I was in complete shock.  I immediately called the gynecology oncology office.  They said they needed to get my information from my gynecologist first before they could schedule an appointment with me.  They promised to call me within the next two hours.  I texted a few close friends telling them the result of my hysterscopy and dilation/ curettage.   They bombed me with so many questions that I could not even begin to answer.  "How serious is it?"  "How much time do you have left?"  "What stage?"  "When do you start chemotherapy?"  I immediately shut down.  I wanted to get out of the house.  I wanted to walk around.  I needed fresh air.  I went to the local shopping center and walked through stores aimlessly.  I kept my phone close to me because I was waiting for the call.  They called and said they had my information and could see me in six days.  They asked me to have my other doctors send them my records via fax.  I took this screenshot and ironically I just came across it today.  The look on my face reminded me of the fear and confusion I was feeling that day.  Yet there is a hint of hope in there.  

On the day of silence at the yoga retreat, I was surprised I did not process the whole cancer journey as much as I thought I would.  I was actually focused on the yoga retreat.  Enjoying the ocean.  Doing asanas and meditations.  Playing with a dog that came up to me with a coconut to play fetch.  I was reading the book, Power of Now once again and gaining new insights.  I was observing how others reacted to my decision to observe silence the whole day.  Silence can be uncomfortable for people.  Silence can be a state of bliss.  It gave me the space I needed for introspection.  

I did one thing that day though... something I have not done for a long time.  After my shower, I took a moment to observe and study the scars from my two surgeries, noticing how they have healed.  I touched them for the first time in a long time.  It was time for me to embrace those scars.  Those scars represent an extension in my time on this planet.  Ironically after that experience, I received a massage at the yoga retreat a couple of days later from a woman who touched my scars.  It was like the universe told her to focus on those areas.  She also worked on my entire abdomen and pelvic area where the uterus once was.  After being thrown off for a quick moment, I realized that the touch was definitely soothing and healing.

I felt truly blessed that I was able to go on that trip to Mexico.  I did different asanas during the yoga retreat that reassured me how far I have come.  Quite truthfully, I realized on that trip that I am still living my life doing great things and there are still much more I want to do and experience.  

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.