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.