I'm a Cancer Warrior

Earlier this week, I had my next support group meeting via video.  We tried on-site interpreters who sat in the room with the members while I piped in via video.  Last month, the on-site interpreters got sick so they had to use VRI as a back-up.  I thought it worked out well.  But I found myself liking the on-site interpreters better.  They are the same interpreters who have worked with me for the past year.  They have grown to know me and the way I express myself.  They are compassionate toward me and the members in the group.  They interpreted support group meetings in the past so they know what they are walking into.  On the other hand, the VRI system that Memorial Sloan Kettering Cancer Center uses is called MAARTI.  Once connected, they ask for a sign language interpreter then the company providing VRI services finds the next available one in the queue.  It's a random person with no prior knowledge of the group or me.  Last month, the VRI interpreter appeared to expect a routine doctor appointment and she got into a support group for gynecologic cancer survivors.  She was visibly uncomfortable.  Another benefit of having on-site interpreters that became very apparent last Tuesday, I could send a text message one of the interpreters to notify my social worker that I couldn't get in.  The social worker wasn't responding to my notifications that there was something wrong with the video meeting link.  I was relieved I did not miss the meeting.

The social worker asked me what I thought at the end of meeting... VRI vs. on-site interpreters.  Before I could answer, everyone in the room said they loved the on-site interpreters.  The social worker told them it's up to me.  Not quite... that was a good teachable moment.  Interpreters are for all the consumers not just me but everyone involved in the communication process.  I was intrigued and wanted to know why the support group members liked the on-site interpreters better.  They said they knew the interpreters.  A familiar face is key to making sure they are comfortable.  The other benefit was that they felt I was a fully present with them because I was taking up the whole large monitor in the front of the room.  Last month, the VRI interpreter's video was on the monitor along with my video making me seem smaller.

I am grateful that things are working out that allows me to participate in the group on a monthly basis.  I am however looking forward to being with them in person next month.  There's something about being in each other's physical space.  And whenever I cry, they would just hand over the tissue to me and stroke my arm or shoulder.  It is different when I am away but... I have Chocolate by my side.

The topic of this month's meeting was survivorship.  The social worker explained that survivorship is a process.  She wanted to know what the process looked like for all of us.  I admitted that I did not comfortably call myself a survivor until just last week in this post (http://naomicancerjourney.blogspot.com/2016/01/one-year-in-retrospect.html).  I was asked when I learned of my remission.  April 14, 2015 was the actual date.  It was difficult to celebrate that because I spent the rest of year dealing with the post-op infection.  Another reason... people expect cancer to mean undergoing chemotherapy and brachytherapy (radiation specifically for my type of cancer).  I did neither.  My first treatment was hormone therapy which proved to be ineffective then surgery was my next treatment.  Then I was done.  Someone once said to me, "You didn't have cancer. You just had cancer cells," as a way to minimize my battle.  I spoke with my oncologist about what was said.  She rolled her eyes and explained that cancer is cancer.  Cancer involves cancer cells.  She said that I really had cancer.  I just had a shorter treatment plan unlike others because we caught it very early.  I commented that I still had the emotional struggles that come with having cancer.  I had to undergo a major surgery.  It was not an easy one but I did it.  Upon reflection of my ride with cancer, I realized that it's okay to call myself a survivor.

There were two new members.  I was thrilled to meet someone else who had stage 1 just like I did.  She had a hysterectomy and then had some post-op complications.  I was not alone finally.  She said that she was like me... did not undergo chemotherapy or brachytherapy.  She explained a symptom of her treatment and dealing with post-op complication- hair loss.  I was surprised I was not alone.  I never discussed this with anyone except the woman who cut my hair who assured me that cancer, drugs, infection, and stress could lead to significant hair loss.  After I started hormone therapy, I immediately noticed that I was experiencing hair loss.  When I was heavily medicated, I noticed clumps of hair coming out after each wash.  I was bothered by this.  The clumps of hair just wouldn't stop coming out.  The group has a registered nurse who confirmed that hair loss is common even for those who didn't undergo chemotherapy.  When I was healed from surgery #3 and off all the medications, my hair started growing back at the end of November.  I have been observing the new hair growth with interest.  New hair is not in my natural color (dark brown) but white.

The group discussed the word survivor.  Many of us struggle with this word.  Yes, we survived cancer treatments.  Does it mean we survived cancer?  Cancer could come back.  One member said she doesn't call herself a survivor but a warrior.  Warriors stand ready to fight.  People often remark how strong I am for enduring through all the medical nightmare.  I didn't have a choice to be strong.  I just had to be.  Warriors have to be ready.  Warriors have to be strong.  I left the meeting liking the word warrior better.  It reminds me of a photo I posted in a previous post (see below).  My name is Naomi and I am a cancer warrior.  Yep I like how that sounds.

 

One Year in Retrospect

Today marks a year since I got that fateful call from my gynecologist, "You have cancer."  When I got that call, it felt like death was thrown in my face.  This picture was taken last year before I began the first round of treatment.

True that.  Cancer didn't stop this girl.  Today, I am still alive and kickin'.  I also learned so much about cancer to know it does not always mean a death sentence is guaranteed.  And each cancer battle is different and unique.  At the beginning of my own battle, I remember feeling a range of painful emotions.  I am at peace right now.  This reminds me of what a cancer survivor friend said to me when I told her I was struggling with the declaration that I was in remission.  "A chunk of your life and body gone.  You will process for a long time but you will heal and find joy in the simple fact that you have a lot more wonderful things to do!"  The past couple months I have been finding the joy that she spoke of.  Referring to a previous post, http://naomicancerjourney.blogspot.com/2015/03/cured-or-not.html, I learned to adapt and survive now that the cancer is in remission.

The other day, I was re-reading all of my posts.  Wow... everything happened so fast that it felt like such a blur as I was going through the motions guided by my medical team.  It was definitely not a peachy ride but I came out peachy after all the raging storms calmed.  At this time, I finally feel I can wear the badge of honor and call myself an endometrial cancer survivor.  Several major themes emerged this past year: the search for a good oncologist, hormone therapy, hysterectomy and recovery, a terrible post-op infection and recovery, constantly fighting for accessibility, and my internal struggles.  Those themes were discussed openly in this blog.  However, there was a recurring theme I did not discuss in depth in my blog-- claim disputes with the medical insurance company.  I thought that I would just deal with cancer.  Nope I had other things to deal with on top of the cancer.  Crazy times.  I especially wished that the health insurance companies would be more compassionate towards patients who are dealing with serious diseases such as cancer.  I often found myself this past year wishing I was living in a socialist country.  I filed numerous appeals.  I am happy to report that I won all of the appeals except for one in which they still believe my surgery #1 was elective.  I have a pending appeal right now but it looks good so far.  Alas... I am down to one medical bill which will be paid off by the end of this month.  Then I am free.  Plus it is a wonderful feeling not having any doctor appointments on my calendar except for the follow-up appointments.  I want to stay as far away as possible from doctors, drugs, and needles!

Someone the other day asked me if I regretted undergoing hysterectomy because it meant my fertility was taken away and I ended up with a complicated post-op infection.  Nope.  Life should not be of regrets.  Yes, the year was difficult and came with pain, fear, anger, and grieving.  The other two options sucked.  First option: stay on hormone therapy for life.  The megestrol made me feel horrible.  I could not even walk across the Gallaudet campus without being out of breath and the daily nosebleeds were frustrating for me.  I could get diabetes if I continued.  Second option: do nothing and I had two years to live. Hmm.  There are still many things I want to do in life.  Granted, if I happen to be hit by a bus tomorrow, I will be pleased that I have lived my life to the fullest and accomplished so much.  I came out of that wild ride, having earned some valuable lessons.  Still, there are many things I want to do like get my doctorate, see more of the world, and meet more amazing people.

As my fellow cancer survivors can relate, I do find myself somewhat fearful that the cancer would come back to haunt me.  But what can I do?  I cannot hide in a bubble and wait for it to come.  I just have to continue living my life to the fullest.  I will deal with whatever obstacles (cancer or not) whenever they emerge.  A friend a while back said that once this is all over, I could just move on with my life forgetting what happened.  I cannot.  When I was born, I was given my name, Naomi.  I was like a blank slate.  Over the years, I added new aspects of who I am.  This recent year gave me a new part.... a cancer survivor.  How do I carve that out of my identity and just move on with my life?  Impossible.  Cancer has changed me in ways that surprised me.  Of course, my core being is still the same but some of my viewpoints have shifted.  And I am stumbling upon those paradigm shifts by surprise by noticing my responses to various situations.  My responses before cancer were different.  I am still discovering new things as I go through the motions of daily life.

A previous post I talked about how I was figuring out my new normal (http://naomicancerjourney.blogspot.com/2015/09/the-new-normal-progression-not.html).   It continues to be a process.  Each day I am learning what works and what does not.  I had wondered in that post if I would return to my die-hard Type A personality.  As much as I want to return to that mode, I find myself struggling.  I am not sure if it has to do with the fact I am still trying to catch my breath.  Before cancer, it was all about work, work, work.  I had my future all mapped out.  I was going to finish my Ph.D. by the time I turn 40 and I was going to do this, that.  After the cancer battle, slowing down and enjoying life as well as investing in human connections became important too.   Now, I just want to live in the present.

When I was recovering from the hysterectomy, I thought long and hard about the quality of my life and knew that things had to change.  I was not leading a quality life.  Since last summer, I have been slowly setting those changes into motion.  Four years ago, I got acceptance letters from doctorate programs.  I remember I cried that day.  The feeling was so bittersweet.  I envisioned two potential paths: settle down in San Diego and buy a home, finish up yoga teacher training, and dive into arts while continuing to work for a wonderful company.  The other path: move to Washington, DC to pursue my doctorate.  Two significantly different paths.  I left San Diego aching for the other path.  The past few months, I wondered to myself... why do I have to choose?  Changes I have been making involves finding a way to make both paths work.  I never liked Washington, DC so why did I need to stay?  I did not want to stay.  I am in a new city that allows me to continue with my yoga teacher training, deepen my yoga practice, and teach yoga.  It is also an ideal place for me to finish my dissertation.  As for when I will finish my dissertation, I am determined to finish it soon but I will not get upset if life throws me another curveball.  I'll just go with the flow.  Anything goes.  Another area of change: relationship changes.  As with any life crisis, you find who your true comrades are.   And who were just for a season.  Some relationships were strengthened, some ended, and some were created.  Some of my new relationships resulted from my cancer.  They just came out and reached out.

My glass is overflowing with countless blessings.  I am content and smiling.  Onward.

Gynecologic Cancer Survivors' Support Group

I had been aching since day one of my cancer diagnosis to participate in a live support group.  The medical center in Annapolis was not willing to provide interpreters.  I was looking into joining a support group at MSKCC but then I was in remission so quickly that I did not have a chance to join a group for gynecologic cancer patients.  Online support groups can be good sometime.  I often felt something was lacking.  As I mentioned in a previous post, some did not meet my needs.  I wanted to look in the eyes of others.  I wanted a live dialogue not reading and responding to posts.  I could not find any local support groups.  Imagine my thrill when I learned about the Annapolis Wellness House and that they do have support groups.  I learned of their Survivorship Support Group a couple of months after the surgery.  I wanted to participate.  Annapolis Wellness House, a non-profit organization, said they wouldn’t provide interpreting services because they are ‘non-profit.’  I was hoping to find volunteer interpreters that would be available for the support group that met twice a month.  No luck there.  I was not in the mood for another fight for interpreting services because technically they were obliged to provide access.  I had just finished a tough battle with two medical centers for not providing interpreting services at my first oncology appointments.  Then I did not have any interpreter for the surgery last October.  I wanted to put my boxing gloves aside for a breather.  

I decided to schedule my first three-month follow-up visit back in August with Dr. Jewell on the same day that the Memorial Sloan Kettering Cancer Center's Gynecologic Cancers Survivors Support Group met.  I requested that the MSKCC provide interpreters for this meeting.  They did.  

The first support group meeting was wonderful.  I was a new member.  I introduced myself and said I just had my surgery a few months ago.  They remarked, “And you have all that HAIR!?!?!”  For some reason, I felt guilty that I do.  They told me not to but that I should feel grateful my cancer was detected very early preventing the need for chemotherapy and radiation.  Those women have been together for various amount of time.  They joined the group when their cancer went in remission.  Two members, however, had their cancer come back at a later time and the cancer has metastasized.  They are currently undergoing treatments.  The risk of recurrence is very real.  We often talk about whenever a new physical concern comes up even in the most random place such as the knee, we are quick to wonder, "Is it the cancer coming back?"  This is a very common fear especially after completing treatment and entering the remission phase.  This fear subsides over time.  But like for the two members, it came back.  We also laugh and cry together over the stupid things people say to us.  We talk about trying to figure out our new normal.  We discuss our sexuality often.  We agonize over how some friends are unable to handle our cancer and are unable to be there for us when we need them.  We agree that we are blessed that we were treated at the country's best cancer center.  The meetings are facilitated by this great social worker who has a theme for each month.  She gives us reading materials, mainly meditations, to take home.

At the first meeting, I told them that I lived in Maryland and couldn't come to New York City every month but I would come each time I have a follow-up with Dr. Jewell.  One woman pointed to the video conferencing equipment in the room and said, "Why not?"  I was taken aback.  "You are one of us now.  You need to stick with us."  I was touched.  I have gained new friends.  They openly embraced me.  Even though as a Deaf person, I am so used to video conferencing all the time.  I use it almost daily at my telecommute job.  I did not even think of it as a possibility for the support group.  The social worker said she would investigate this possibility further.  I waited patiently and was missing them in September and October.  I was back in November.  There was a new member from Trenton, New Jersey.  She was baffled, "You came from Maryland for this?"  I smiled and said, "Yep.  I love this group!"  Then another woman who comes once or twice a year piped in, "Hello I came in from Brazil! We don't have something like this over there."  She was awed.  If we need to connect, we find ways to make it happen.  

My social worker, along with a team of social workers, worked with the IT department.  They said they would give the video conferencing option a test run for the December meeting.  Ironically I was really nervous about the December meeting.  I really wanted it to work.  I did.  I needed my safe place and I needed to connect with women who get it.  My social worker notified me liked an hour before the meeting that the interpreters called in sick.  Dang.  I was discouraged.  She assured me they were trying to come up with a solution.  They decided to try and make VRI work with the video conferencing platform.  When I connected to them, I could see IT people scurrying around trying to make it all work out.  And it did!!! I was surprised that the VRI interpreting platform did work out nicely for this meeting.  I was on the other side of the country in San Diego piping in.  Initially, I was worried they might forget about me since I was not physically present in the room but they did not!  This is largely a Deaf-related issue, after having been left out by hearing people often.  They really meant it when they said, "You are now one of us!"  Whenever I nodded or shook my head, they immediately noticed and asked, "Naomi what do you think?"  If I raised my hand, they were quick to acknowledge it.  I didn't feel like I was miles away.  I was THERE.  Since it was during the holiday season, the social worker handed out electric tea lights for us to share the light at the end of the meeting.  She said she would mail me all the readings and the tea light.  When everyone lighted up their tea light, I used my iPhone's flashlight app.  I had to improvise!  

Today when I was going through my accumulated mail from the past month, I find a tea light.  I smiled.  I spoke with my social worker today.  We are going to try for on-site interpreters to be present in the room with the group members for the January meeting.  We are going to see which one works better: on-site or VRI interpreters for all future meetings.  I was also pleased to learn that I don't have to be a patient of MSKCC to continue participating in the support group meetings.  I have been considering finding a local oncologist now that I just need routine follow-up checks.

It is really nice not to feel alone.  I do have amazing support from my loved ones.  It's just not the same.  I just need to be with those who have gone through this battle just like I did.  

Rediscovering Womanhood

An update: I am an impatient patient (oxymoronic, I know).  Whenever I am told I can do something, I take it quite literally and jump in with a full blast.  When my medical team at the end of November told me I could go live my life again, I took that literally and went to advanced yoga classes and went hiking.  Last week, I hiked with friends up the Mt. Woodson in San Diego (7.10 miles round trip).  I was aching all over the next day and walking funny.  Two days later, I was determined to take on Mt. Cowles (a 3-mile round trip), also in San Diego, despite an aching body.  And I did.  After that second hike, I found that my wound was bleeding. Whoops.  My doctor said I just irritated it and instructed me to go back on the Epsom salt bath and prescription ointment treatment for two weeks and that I'll be right as rain.  I love this particular doctor because she gets me.  She said, "Go do whatever you want to!"  Yay.  I have had a full year away from my favorite activities.  My friend who just had a bilateral mastectomy two weeks ago was telling me when I visited her that she wanted to feel like herself again.  I told her I knew exactly what she meant.  When I wanted to feel like me, I need to be active again.  I was aching to get back to my active lifestyle and had numerous obstacles to overcome.

Part of my healing process involved a re-exploration of womanhood.  The past month I have been increasingly aware that I am set apart from women my age.  This reality was slapped in my face when I was cleaning up and found my supply of tampons and overnight maxi pads.  I did not need them anymore.  Sure this reality was in the back of my mind for months after my surgery but it was like I was not ready to face it.  I wanted to get better first before I dealt with the fact I no longer needed those stuff.  I found a tampon here and there in my purses.  I thought that maybe I would get them out but I just could not.  I was not ready.  I was rationalizing... I am a "always be prepared just in case" kind of gal.  I was able to give a tampon to a woman who needed it.  See, it came in handy! Last month I was able to pass those tampons and pads on to my menstruating friends.  In the past two weeks, my friends were complaining to me that they were dealing with painful menstruation.  I used to have those a lot leading up to the discovery of uterine polyps.  Then I realized that I did not have those anymore.  I no longer had to worry about avoiding inversions in yoga while I am menstruating.  This could be a good thing.  I try to relate to women who have had menopause.  I still cannot.  I still have functional ovaries.  I feel like I'm stuck in the middle.  A perfect analogy exists in my Deaf community- hard of hearing folks often say they feel stuck in between hearing and Deaf worlds.  I feel stuck just the same.  I feel I am stuck in between menstruating women and those women who are done.

My reproductive system was taken away from me and I had to reassess what it meant to be a woman.  I was raised in a society that believes that if woman is unable to bear a child, she's not all woman.  The greatest irony though which also reveals the harsh imbalance of our society-- if a man does not inseminate a female to produce a child, the man is not made to feel he is not truly male.  Some women with whom I have spoken the past year commented that if they were unable to use their baby-making equipment, they do not feel like a woman.  I can relate to a sense.  It was like a general biological expectation of women to bear children.  I thought I was going to bear a child at one point or another in my life as if it was a given.  When it was clear I was not going to bear a child, it was like my world was turned upside-down.  On top of it all, my mother had her view of what it means to be a woman.  I could never fit in that definition growing up.  I was repeatedly told I was unladylike and not feminine enough.

Needless to say, labels are harsh.  Labels pacify people's need to categorize people.  I have always believed that my truest label is simply Naomi.  If you want to know more about me, ask and ye shall learn.  Don't categorize me.  Don't classify me.  Despite my die-hard philosophical take on labels, I am still a softie.  I was affected by the society's expectation and definition of womanhood even more this past year.  I woke up one morning a few days after my hysterectomy, I immediately felt my pelvic area and could feel that my uterus was gone.  I felt my vaginal cuff (it is called cuff without the cervix).  I felt different.  I cried.  What became of me?  Who am I?  Am I still a woman?  Over the past few months, I have been processing what it means to be a woman.   I read some stuff about womanhood.  A woman can be a woman without bearing a child just like a man can still be a man without insemination.  I came across this wonderful quote in my readings on womanhood that resonated with me:

"She is free in her wilderness, she is a wanderess, a drop of free water.  She knows nothing of borders and cares nothing for rules or customs.  'Time' for her isn't something to fight against.  Her life flows clean, with passion, like fresh water." -Roman Payne

My name is Naomi and I AM a woman.  Exploration of womanhood is a life-long journey and I still have a lot of mileage in me.  I am still learning but I will try my darnedest not to be bound by the societal expectations of me as a woman.  I will mold my identity as a woman in the way that works for me, only me.  Let me be.