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.

 

Week 5 Recovery: Springing Forward

Spring is finally here!  I am enjoying the spring flowers that have been appearing in the backyard and the neighborhood.  I started walking much more.  Chocolate, who has been patient, is really grateful for the longer walks with me again.  He is probably also grateful that the snow is actually gone for a good while.  It was validating to hear from some girlfriends who came over last Sunday recognize the progress I have made in my recovery.  They saw me about two weeks post-op and again three weeks later.  They said I look much more normal now.

Week 5 was the first week I felt more like myself.  My mind was feeling more clear.  I was more alert and productive.  Yes, I am recovering from a major surgery.  People wondered whether to call it a major surgery.  A hysterectomy is a major surgery as it involves the removal of a major organ from the body.  It takes time to heal. 

I am able to do more things.  I am cooking daily again.  Driving is becoming easier.  I gave interpreting another try and enjoyed it so much.  I re-visited my "nerd-dom" by working a bit on a research paper.  It was so stimulating.  There continue to be restrictions: I cannot lift anything over 10 pounds.  I ache to lift Chocolate from the ground to hug him.  I cannot push or pull anything (i.e. vacuum, shopping cart).  I cannot take baths nor swim.  I cannot do any workouts except for walking.  I crave for my full independence, which includes going shopping on my own.  I want my active lifestyle back.  Patience...

Last Monday, a shopping cart was accidentally pushed into my abdomen.  That really hurt and made me really dizzy afterwards.  I was sore the whole day.  I was relieved that I was feeling okay the next day. 

There has been so much reflection on my part as well.  It was like I had just gotten off the wild roller coaster ride that I did not want to be on.  I am slowly reminiscing that ride.  It is surreal to be exposed to different possibilities when it comes to cancer.  I know of a woman who got her esophageal cancer diagnosis a week after mine and she died two months ago.  I know of a woman who got her breast cancer diagnosis two weeks after mine and is about to die any day now.  Upon hearing those stories, I struggle with whether it is okay to feel blessed I am not in that position.  I do but my heart aches for those women and their loved ones.

My friend gave me a book to read to help me get through this cancer journey, 50 Days of Hope (Eib, 2012).  Truthfully I was not able to open it until this past week.  My life felt too overwhelming to read something like this until now.  The author spoke of how she does not exactly know how other cancer patients feel but she does understand to a degree.

"But I do know what it feels like:
To hear my name and 'cancer' in a sentence together.
To wait agonizingly long for test results.
To struggle over treatment decisions."  (pg. xiv)

This part of the reading struck a chord with me.  The second item reminds me of a text message I got from a friend back in January.  The conversation went like this:

Friend: "I heard this ugly rumor about you." 
Me: "What's that?"
Friend: "That you have cancer."
Me: "Yep, true."

Naomi and cancer in a sentence together.  Weird and sucky.  It's the truth.  I became part of the 'ugly rumor mill.'  It's like I have earned the scarlet letter marking.  At the same time, I am conflicted.  I am cancer-free after two different types of treatments: hormone therapy and surgery.  I thought that in order to be part of the 'cancer club', I had to experience radiation and/or chemotherapy.  Do I call myself a cancer survivor?  Or do I not?  My ride with cancer was for a short time and I'm cancer-free.  I do understand what it feels like to wonder and wait with so many questions and being in such a horrible fearful state.  And being forced to make a decision: become pregnant or live.  Yet, I am stuck with oncology visits for life because there's always the risk of the cancer coming back to haunt me. Well, I hope not.

The author also said one other thing that resonated with me.  She spoke of hoping that the cancer diagnosis was made in error.  I spent countless moments wondering, and hoping "What if they really are wrong?  I really don't have cancer.  It was something else."  Once the reality sunk in, I immediately wanted to find a woman who was in the exactly same situation was I was in.  The author did just that and could not find such a person.  She met other cancer patients and survivors.  I never found the woman who was dealing with the same thing I was.  However, I met cancer patients and survivors who have been instrumental in my process.  It was them that helped give me the courage to move forward.