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.  

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.

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.

 

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.