Sunday, May 12, 2013

Highs and Lows and lots of tears...

This has been quite the emotional week... so I thought perhaps I would give you short synopsis...


Monday I went to my main oncologist with my husband and my son.  I brought in my list of many questions -which my oncologist has become accustomed to at this point.  We talked about drinking coffee on tamoxifen, whether I can be in the newest  TDM1 trial (he said no, but I am going to try again),  and a bunch of other questions regarding life after treatment.  At one point, I said, "Since I have cancer..."  He put his hand on my knee and said, "Since you had cancer."  I cried and took a deep breath.  Yes.  I don't have cancer anymore.  I am cancer free.  Everything I am doing from this point forward is to insure that I continue to be cancer free.


I woke up with my hands not working correctly.  They had been aching for days - but now I could barely make a fist.  I tried to write something later in the day, and could not grip the pencil.  This too is an unwelcome side effect of chemotherapy.  Especially unwelcome because I am an artist, and art is my way of coping.  I  went online a little later and was attacked by the dreaded google monster.  He was hiding in a Her2support group site.  It talked about my poor prognosis.  I became extremely depressed.  Luckily, I went to my support group that evening and was able to share and cry and feel better.  The dark thoughts are intense.  Every worry is magnified and crazy making.  One of my online support group friends, Erin, likened the dark thoughts that swarm around your head to the flying monkeys from Oz.  I remember being terrified of those monkeys when I was little.  So terrified in fact, that it wasn't until a few years ago that I actually kept my eyes open and actually looked at them.  The Wizard of Oz is my daughter's favorite movie, so I began to look more closely at those monkeys.   I was surprised that they really weren't quite as scary as I had imagined (and I love their coats.)  Some of the dark thoughts I have are also not so scary when I look at them without fear clouding my vision.  I am not a statistic.  I am fighting.  And the dark thoughts are only powerful if I let fear control my vision.


I have a head ache.  It is intense and radiates from my eyes to behind my ears.  My vision also feels impaired.  I then get attacked by the google monster once more and have convinced myself that I have a brain tumor.  The type of cancer that I have seems to love to metastasize to the brain (I would share the google statistic that I found, but it is too scary for my family and friends).  I also found a small lump on the inside edge of my breast.  My husband tried to assure me that it felt like part of my tissue expander, but I really couldn't hear him through the incessant bad thoughts in my head.  After a good amount of fretting and crying, I took some medication and went to bed.  (Us cancer patients have all the best medications.)


After radiation, I was directed to the waiting area so that I could see my radiologist.  It was super busy and there were lots of people waiting with me.  There is a special kinship among cancer patients.  Before long, we were comparing notes on doctors, laughing about our hair, sharing information about this study and that, and wishing each other well as each of us left the waiting area.  There was a beautiful woman who had come from the Philippines to get her treatment who loved the little hair I had.  For a while, I was the youngest one in the waiting area... but then things changed.  A young woman with breast cancer came and sat down with her husband... and then a young man came with his mother.  He had a brain tumor.  Myself and the younger woman comforted the young man who was possibly going to have to go through chemotherapy after radiation.   The young man was then called in to his examining room.  He shook all of our hands and I hoped for his full recovery.  I didn't share with him that I had been contemplating my own potential brain tumor.  All of the sudden, my fears seemed so silly.   My radiologist ensured me that I did not have a brain tumor, and that more than likely this was dehydration and more side effects from chemotherapy.  She felt the small lump in my chest and told me that it was part of my tissue expander (I guess I should have listened to my husband). So, with a big sigh of relief, I left continuing to feel cancer free.


When I was first diagnosed with cancer, I remember running into a good friend at Target.  I sobbed at the end of the hot wheels aisle as I told her about my upcoming treatments.  Within a week of telling her, my friend's mother began sending me cards.  They would come every other week - and sometimes weekly... but always just when I needed them.  They reminded me of my strength, and let me know that I was in her thoughts and prayers.  They meant so much to me, especially since she herself was battling stage 4 lung cancer.  About two months ago, the cards stopped coming.  I found out from her daughter that her life was nearing its end.  I was able to visit her one last time and sat on her bedside telling her how much those cards had meant to me.  She died a few weeks ago.  When her daughter asked me to read at the memorial service, I almost said no.  She wanted me to read the poem "What Cancer Cannot Do."  I envisioned myself as a big sobbing mess in front of everyone ruining everything.  I also knew I would regret it if I didn't do it.  My husband encouraged me to read the poem when I talked with him about saying no.  My friend said she would be fine with my tears.  So, I read over the poem 50 times and thought I was ready.  On Friday, I read it at the service and cried.  And even though I tried, I couldn't stop the tears.  I was sad that she was gone.  I was sad that her family was mourning.  I was sad that her grandson lost his grandmother.  I was sad because of my own battle with cancer.  And guess what, even though I cried and it was challenging, it ended up being okay.  It was a sad thing- and my tears were appropriate.  And I felt so lucky to have been a part of such a beautiful ceremony.


We decided to celebrate Mother's Day today to avoid the crowds.  We took the kids to the aquarium and then out to lunch at a beautiful new restaurant that served lots of delicious organic and vegetarian options.  It was a wonderful day!  I sat at the table looking across at my husband and daughter, with my son leaning his little body against me and started to cry.  They were all so beautiful.  I want desperately to live to see my children fall in love.  I want to play with my grandchildren.  I want so much out of this life... but in that moment, I just felt happy and thankful.  Almost immediately, a woman sitting at a table next to us began to have a tantrum with her waitperson.  She then asked to speak with the manager and then the owner.  She complained about everything that she could think of.  Her anger was relentless.  Her mother and grandmother were both trying to calm her down in Russian, but she snapped at both of them.  Her small child was sitting next to her in his stroller.  I wanted to tell her what I had learned on this journey - that these things she was so angry about were trivial.  That she should feel so lucky to have four generations sitting at one table sharing a meal... but instead, we hurriedly paid our bill and left the restaurant   Before leaving, I told the owner that we had a lovely experience and thanked him.  I don't think the angry customer would have been open to my advice anyway.  Some things you have to learn for yourself... which is too bad. 


My husband made me a delicious anti-cancer smoothie and we had a lazy day at home.  The highlight of the day was talking to my mom, sister, and dad over Skype.  I miss them all terribly.  This illness has helped me to understand how important it is to be near family - and I know I will make it happen one day.  But for now, I am thankful for Skype.  Of course, tears were shed.  I am so lucky to have their support, even though they are far away.  

So, I think I cried pretty much every day this week... but all in all, it was a good week.  I hope everyone had a wonderful Mother's Day!  Here is the "What Cancer Cannot Do" poem...

What Cancer Cannot Do.

It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendships
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

20/33 radiation treatments completed!  I am feeling much more pink and my chest is shiny from my intensive lotion regimen... 
but I am surviving.  


  1. my darling one,

    i read your post from the infusion center. and yes, there were tears.
    i want to thank you for recording your journey with such honesty and emotion. you are such a guiding light to so many. although the life challenge that takes me to the infusion center is quite a different animal, (beast that it is!) i am often sitting with women who are walking this daunting journey. to share so vividly your experience, your fears and your victories is to reach your arms out in comfort to all.
    thank you for being exactly who you are and so generously including us in your life.
    i love you.

  2. love you too! Thanks for coming to visit me. I will visit you soon and hopefully take part in something not cancer related... which would be nice.

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