Seven years and counting...

 A friend asked me last night what the return of rate was for 7 years. To be honest, I had no idea. I never thought about recurrence rates. I decided to investigate this. Endometrial cancer if detected early have 90 percent of survival. Recurrence rate for those who caught the cancer early on is 2-3 percent within the first five years. After that the rate goes down. 

 What is life like for someone who has been in remission for seven years?

Sometime cancer is like an afterthought for me. 

Sometime I find myself feeling grateful for my insistence on finding someone who was wiling to look to see what was up with my painful and heavy menstruation.  

 I continue to struggle with survivor's guilt when I see accounts of others dying of cancer. 

Whenever I feel pain in my pelvic region, I wonder if it's cancer rearing its ugly head.

I have moved forward. I recently returned to my gynecologic cancer support group at the Memorial Sloan Kettering Cancer Center as they now hold all of their sessions on Zoom (thanks, COVID-19) to seek answers and support on some things I am dealing with now as I approach perimenopause. It was nice to come back after a few years and seeing familiar faces and making new connections.

A student of mine mentioned earlier this week that she knew nobody with cancer. I told the class that once you have had cancer, you would know many. 

Another friend asked me yesterday if it was taking an emotional toll on me to support others in their cancer journeys because it seemed like it has been many times. Nope it does not. I remember when I first got diagnosed, I was desperate for information and could not find the answers I needed from my own deaf community.  Now that I have information, I am happy to share. Within the deaf community, there is the shared value of reciprocity. It just comes naturally to me. But when those people who reach out to me end up dying, that is when it is so hard for me emotionally. 

 

Celebrating five years in remission during the #stayhome era

Five years ago today, I received news that my cancer was in remission. I remember making a promise to myself that I would celebrate big for the one-year and five-year anniversaries. In light of the COVID-19 pandemic, I am staying at home instead. Today is just another day of #stayhome. This morning I gave the refrigerator a deep cleaning. This afternoon, I have a two-hour meeting. And I am doing some laundry and writing as well. Nothing memorable.

Strangely, the COVID-19 had some similarities with the time I had cancer. I was asked not to travel because my immune system was weak during that time. I remember feeling so trapped at home. I was also living with an abusive partner at that time who made my life, including the recovery, much more difficult. This is why my heart breaks when I think of how the #stayhome impact people who are being abused at home.

When I was given the green light a few months after receiving remission news, I was so thrilled to travel again. Remarkably so, I have traveled a lot more since then. It is like I have a desire to experience as much as I can in this lifetime. I had several trips between March and July cancel because of COVID-19. Admittedly, I do feel trapped but somehow, I am finding some blessings in this experience. I remember back then, staying at home meant I was given the time to re-evaluate my life and finding enhanced enjoyment in my favorite hobbies. It was during that time that I knew I had to get out of that unhealthy relationship. Additionally, I did some introspective work that prompted me to make other changes in my life. Five years later, by staying at home during this pandemic, I am back to re-evaluating my life. Having this time is valuable and I have been "too busy" in the past few years to do this deep introspective work.  I woke up this morning with a realization that this time of self-exploration is a gift in itself. Indeed, it is a celebration of how far I have gone in the past five years and a way to look forward to new changes in the next five years.

Immunocomprised or not?

Well... it has been a while.  That happens.  I got so busy with living and working too much.  My cancer journey became an afterthought for me although there are some days I am reminded of it.  When I get those random reminders, I often process a blog post in my head but... never actually typed those words.  Then coronavirus (COVID-19) happened.  I am stuck in my own home not able to travel nor work out in the field.  This gave me a luxury of time to blog again for now....

There has been a lot of talk about how individuals who are immunocompromised are considered high-risk if exposed to COVID-19.  My sweet, dear husband has been really worried about me.  I insist that I am not immunocompromised.  I continued to accept assignments outside the home last week and this week.... I figured that those might be the last jobs I will see for weeks to come so I was willing to take them.  What does that mean for me?  Am I risking myself?  Am I risking others?  It is hard for me to figure out because there continue to be many unknowns.  Most of them were medical interpreting jobs.  I figured people still needed access.  I took a lot of precautions: washing hands, not touching my face, and using hand sanitizer every five minutes at medical facilities. 

My husband's comment "you ARE immunocompromised!" kept on ringing in my head.  I have been in remission for almost five years.  My health has been good since then except for developing asthma after moving to Minnesota.  This danged frigid weather!  This first winter was a pain.  The second winter, which we haven't been done with yet, has been much better.  I have not had any asthma attacks since the freezing temperatures in November.  I actually feel really great those days.

Back to the original question: am I immunocompromised?  I researched high and low but was unable to come across any clear answers.  One website said that survivors of cancer may be immunocompromised depending on how long it has been since their treatments along.  One medical website said that survivors who are not getting active treatments probably do not have the same level of risk of those receiving treatments.  I was going to ask my doctor this question last Thursday but...  she cancelled that appointment.  Too bad HealthPartners charge $45 for each email question so I will refrain from asking. 

Truth be told, I am still confused.  For now, I will just stay home as much as I can.  It does help that I actually like the husband.... and the three dogs that live in this house. 

In Memory of Susan Lynn Crouch

Even though it has been a while since I last blogged (life has been quite interesting...), I am touched every time I learn about how my blog helps other women.  I have met with some deaf women via video to answer their questions about uterine/endometrial cancer or hysterectomy.  One of those women was Susan.  But what made Susan unique was that I already knew her.  I met Susan in 2002 when I moved to San Diego.  I remember she was so warm and welcoming.  Moving to a new place can be challenging and I have done a lot of moving in my life.  Susan's warm nature was like an open embrace to welcome me to San Diego.  Over the years, we have met up with other woman walkers.  At the beginning of this year, a mutual friend told me that Susan was diagnosed with breast cancer and then they found out she had ovarian cancer as well.  I was happy to talk with Susan.  We met via video a couple of times and talked a lot using Glide.  She said she read all of my blog posts.  She had many questions about undergoing the surgery to help her prepare for her full hysterectomy.  While I was supporting her through the preparation and recovery, she was selfless enough to root for me to finish my Ph.D.  She was ever so optimistic after her hysterectomy.  I remember the day she sent me a Glide message proudly showing me the series of photos that Laura Harvey had taken of her fingerspelling cancer in American Sign Language.  The letter C was shaped with an extended middle finger to represent "fuck cancer."  We bonded over those photos and agreed... yes.  Fuck cancer.  She was hopeful.

I was so heartbroken to learn that she passed away last Saturday.  I struggled on Saturday evening after learning of her passing.  "Why? Why?!  Why take this amazing person from this earth?!"  With the current trying times,  this world needs someone as sweet as her to lighten up things.

Susan, your soul will still shine on.  Thank you for allowing me to be a resource for you.  Until we meet again someday... hugs.

"Not Living": Is that really a cancer prevention strategy?

I have pretty much thrown myself deeply into my academic life.  Oh... it's so good to be back after being out of the circuit for almost two years.  I am writing and publishing.  I am giving talks.  I am networking.  I am now collecting data for my dissertation.  Basically, I am nerding.  Life is good.

A while ago, a friend reported to me that he noticed someone making a comment when there was a discussion on social media about a particular food that should be avoided because it had a possibly of causing cancer.  Someone made a comment that if one was really concerned about cancer, one should not live.

His comment made sense from one viewpoint.  Cancer is so scary that it seems to be caused by many things: food, toxins in our air, chemicals in things we use daily, etc etc.  If one truly wants to be safe from cancer, then one should not live.  Basically, as long as you are alive-- there's a risk of getting cancer... getting sick with something else, etc.  We're basically screwed, yes?  On the other side of the coin, that comment can be offensive.  It could be read as "stop living," or "if you are scared of potential cancer-causing stuff, then what's the point of living?"

As a survivor for over two years now, I am truthfully more conscious about what things may cause or prevent cancer.  I have made some changes.  I am more aware of what things to avoid.  I try to lead a healthy life.  If I read a new research alerting me of potential risks, I would definitely pay attention!  My body unfortunately has the mechanism to produce abnormal and cancerous cells.  The risk is there.  Sure, it is under control since the uterus, fallopian tubes, and cervix were removed.  This is why I am in remission.  Quite frankly, I really don't want to deal with surgeries and treatments again.  So if I want to avoid anything that could trigger that mechanism in my body, I most certainly will pay attention.  This is because I think my life is good and I want some more mileage out of this one.

So if I pay heed to newest research about things that could cause cancer, I call that living... by being aware of risks and prolonging my life because I want to continue nerding for a while longer.  Thank you very much.

ABD!

ABD has a double meaning for me now.

First, ABD is known within academia to mean a person is completed with all the requirements of a doctorate program except for the dissertation (All But Dissertation).  I officially received my ABD status on May 8th when I passed my dissertation proposal defense.  I overcame another hurdle.  The private session with my committee after my 35-minute presentation to the public was so long and grueling that after an hour has passed, I was exhausted and ready to give up.  They finally excused me for their private deliberation.  When they called me in to tell me I passed, I cried.  The committee members were surprised by my reaction.  I explained I was so emotional because the cancer had put me off my track and it was a difficult struggle to get back on the train, so to speak.  I'm finally back on the track to become Dr. Naomi.

I was so stressed out a couple of weeks leading up to the day of defense.  I wanted to be sure nothing else would prevent me from getting to that milestone.  I planned for several months to do the 5 Boro Bike Ride in New York City.  And when my dissertation committee voted for May 8th out of three possible dates, I groaned.  The bike event was May 7th.  I was to ride 40+ miles the day before my dissertation proposal defense. Oy vey.  Onward.  I was waiting for the weather in Rochester to warm up so I could begin training again.  I had not ridden my bike since before I had cancer.  I didn't start training until around four weeks before the event but did not get to train much because the weather wasn't cooperating.  I used the bike ride as way to process my feelings about the cancer and getting back on the track.  It was a powerful moment when I biked past the place where I had my surgery.  I was surprised that I finished each single mile.  The final stretch was the Verrazzano-Narrows Bridge.  It was hard and long but they painted inspirational messages on the road that applied to the ride itself, my cancer, and my dissertation journey that sustained me all the way to the finish line.

I am truly excited about my dissertation work.  I am now awaiting the approval from the university's Institutional Review Board (IRB).  It was the cancer that changed my dissertation topic.  I had a completely different idea and threw it out after getting cancer.  I felt it was important to investigate how extralinguistic knowledge influence translations of cancer words and concepts.

The second meaning of ABD is something I came up a couple of weeks ago out of inspiration.  ABD= All But Disease which is similar to what oncologists say NED (No Evidence of Disease).   May 22nd was my final three-month checkup.  I was done with undergoing two years of quarterly checkups.  My oncologist has given me the title of survivor.  I discussed in an earlier post about different meanings of survivorship (http://naomicancerjourney.blogspot.com/2016/02/the-different-meanings-of-survivorship.html).  Oncologists label their patients as survivors if there has been no evidence of disease for two years.   For the next two years, I will have biannual checkups.

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.