About Me


Surviving Survivorship.  It's what all cancer survivors do.  This survivor has had Breast Cancer - 2005 and Hodgkins Disease - 1983.  Plus, more recently, a couple different skin cancers.  

These days, cancers can be treated, halted, placed into long term remission..... But the survivor never really escapes cancer harassment.  Even after years the survivor is reminded of that slice of their lives in hell, multiple times a day.  Reminded by a smell or taste, or even by the sight of a specific candy (those damn peppermint balls - UGH!).  Reminded by scars and disfigurement the mirror doesn't hide.  Reminded when a headache, or a lump, or a pain, or a cough, could potentially be a new symptom of cancer returned.  Reminded by chronic related health issues caused by the very same treatments that saved their life.  Reminded by the huge change in the quality of life left over from those same harsh treatments.  And reminded that the person they were before diagnosis is not the same person after - physically and mentally.  Cancer harassment. 
THOSE DAMN PEPPERMINT BALLS

I have extensive nerve damage from Radiation Induced Brachial Plexopathy (RIBP) and Radiation Induced Fibrosis (RIF).  Most of which was caused by the mass mantle radiation I received in the early 80's for the Hodgkins.  Added to that mass radiation, more in 2005 to the right breast scar and axillary nodes. This damage is cruel and relentless.  I have lost the use of my right hand, wrist, and forearm.  My left hand is on the same path of destruction, as it is now my primary hand.  This type of damage to the nerves causes additional loss of muscle the more you use it - the more you use it, the more you lose it.  I've lost sensory feeling in my right hand.  The muscle loss is extreme.  The nerve pain is severe - bee stings, intense tingling, stabbing.  Like it feels when you whack your funny bone, only not so funny.  This pain and sensation are 100% of a 24 hour day.  It enters my dreams when I attempt to rest.  Chemo Induced Peripheral Neuropathy (CIPN) has affected my lower legs, feet, and left hand.  This causes numbness, tingling, stabbing pain, loss of balance in my legs.  I drop a lot of stuff.  Whereby, I then curse in my outside voice as if I have tourettes.  The early 80's Hodgkins chemo cocktail was 10 cycles of MOPP/ABVD.  The 2005 BC chemo cocktail was 4 cycles of Cytoxan/Adriamycin followed by 4 cycles of Taxotere.  Too much Adriamycin (chemo) in my lifetime caused the heart damage, Cardiomyopathy - infraction is about 30%.

The nerve damage gradually took its toll.  Extreme muscle loss in hands, arms, legs, back and neck.  It took me years to figure out what was going wrong.... Why was I dropping stuff.....  Why didn't my computer mouse go where I want it to - it's like it was alive.....Why couldn't I type accurately anymore - the backspace and delete keys were getting plenty of use.... Why was my pen falling from my fingers..... why couldn't I make letters and numbers when I write..... Why does my shoulder, back and neck feel so hard and solid, like cement was poured in there....  Why can't I raise my arm up to reach for something in the cabinet..... Why do I have this constant tingling and stinging pain in my hand and arm.... Why, why, why?  My oncologist didn't know.  The radiologist didn't know.  The general practitioner didn't know.  Internet searches, networking with others having the same symptoms, and a shoulder surgeon I found on my own, led me to realize why this was happening.  An incredible Dr and program at Memorial Sloan-Kettering in NYC actually specializes in these types of cancer treatment side effects.  I spent two weeks there.  Finally, I have a true diagnosis and prognosis.  Diagnosis is the RIBP, RIF, CIPN.  Prognosis is poor.  Many cancer survivors are now experiencing these same side effects.  Often their medical team has no idea what's happening to them.... Frustration and fear.  There is new hope for us all. As our voices have gotten louder, we have gotten attention.  More and more oncologists and radiologists are understanding what’s happening to the survivors.  More research findings relating to cancer treatments and more attention to the survivor side effects are occurring today.  However, it's only a start, and much more work and research must be done.

My focus - create a loud voice, from many voices.  Cancer survivorship is now in the millions.  Amazing!  With that survivorship number comes much needed specialty medical training and knowledge.  The cancer survivor is suddenly released from their oncologist.  Their lifeline feels cut.  They are turned over to the general practitioner.  Yikes!!  We need a medical practitioner who knows and understands the long term effects of cancer treatments.  One who knows what to look for in potential metastasis, or new cancers.  One who will know how to treat our long term, and often late term, side effects.  One who can identify with the patient on a level playing field.  One who doesn't have a blank stare, or a shrug of the shoulders, or totally dismisses us as having imaginary symptoms.  A Cancer Survivor Physician.  Maybe?

In the meantime, surviving survivorship is what we do every day.  It's what I do.

Occasionally, I hear someone say that strength comes from such life changing events.  I say, you never know how strong you are.  Sometimes being strong is the only choice you have.  

Stay Strong,
Cindy

3 comments:

  1. You raise a lot of good questions for us all to consider re: our health, attitude and our sexuality, which, as you point out is more mental than physical anyway.

    Thank you, Dear Cindy,

    STAY STRONG!

    Dee

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  2. Cindy,

    So thankful that AM directed you to myHeart! I will look forward to getting to know you and the path you have walked in the weeks ahead.

    Would it be possible for us to meet by phone for ~30-45 minutes one day this week? Let me know your availability and we can take it from there. Indeed, there are more of 'us' out there and we MUST bring our voices together to bring about the change we'd like to see.

    Stephanie Zimmerman, MSN
    Persident myHeart, yourHands Inc

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  3. It is two months later, Dear Cindy and I'm still thinking about your points - about how my mother's health and life may have been improved upon had she had MD's who were more aware of the implications of her physical and emotional struggles.

    Perhaps there are other countries where your dream is a reality. In the US, the financially-driven health care system prevents even teh most caring MD's from spending too much time minstering to each pt.

    Your efforts and struggles are truly admirable. It is good that you give voice to the pains and difficulties often born in silence by so many survivors.

    Take good care of your good self, dear,

    your pal - Dee

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