A Possible New Battle Looms

All I have of my battle with Hodgkin’s Disease are my memories.  The steps I took to recovery from my open heart surgery are undocumented.  I have no notes on the little side things that have occurred since that surgery, including a diagnosis of sepsis and pneumonia.  But for some reason, I will start now.  In preparation, I will designate this officially as “Battle #4″.  Not that the other medical things I have had to deal with are not as important, this has the potential to be a true game changer, like cancer, cardiac surgery, or a life threatening blood infection.

Two weeks ago, I received a phone call from a nurse at one of the doctor’s office’s  that takes care of my late term side effects.  Though my thyroid level has been checked every year through bloodwork, this year marked the second year in a row, that an ultrasound was performed on the thyroid.

Last year, it was noticed that I had nodules on a very small thyroid.  Everyone ends up with nodules at some point or another in their life.  But the small thyroid was due the extreme amount of radiation I had been exposed to when I was treated for my Hodgkin’s Disease.  To give you an idea of what I had been exposed to as far as levels, I received four times the lifetime maximum allowed of radiation to cure my Hodgkin’s.  Who am I to complain?  It’s been over 22 years!  It is quite possible I would have been safer reporting on Three Mile Island from outside the cooling tower back in the 1970′s.

Back to the phone call.  My results from the current thyroid ultrasound still reveal the small throid and three noticeable nodules.  Two are cystic at about 2mm on the left lobe.  But on the right lobe is a hypoechoic solid nodule, containing internal vasularity measuring at 5x5x4mm.  I am scheduled to undergo a needle biopsy on only this nodule (as far as I know).

I am actually quite calm about this, much like my heart surgery.  I was unconscious for the sepsis, but totally freaked out over the cystoscopy that I had done (Google it to see what it is if you must).  I will get this done on Tuesday, and hopefully have results before the end of the week.  Knowing so many before me, exposed to what I have been, I know the possibilities.

And so it begins.

Ask The Survivor

http://www.mskcc.org/sites/www.mskcc.org/files/node/4333/documents/summer-2011.pdf

This is an article that I originally wrote and was published in the seasonal newsletter “Bridges” for Memorial Sloan Kettering Cancer Center, page 7

What prompted you to consult

the MSKCC Counseling Center?

On March 3, 1990, I completed my last treatment for Hodgkin’s disease. I often use the word “cured” or “survived.” Over the last year, I’ve come to realize, I am still fighting my cancer and have not fully survived it, at not least yet.  Emotionally, I felt that I got through my  cancer fight alone. Physically, I know it was actually a team effort. There were countless other people going through similar cancer battles, but when everything ended and I was in remission, I still felt alone.

Cancer isn’t just a physical battle, it is a mental torture. Despite our similarities, even a cancer patient can’t begin to know the true inner feelings of another cancer patient. We have to deal with lack of control, uncertainty of remission, our mortality, and our recovery. Many of us go through treatment without this mental preparation or support.

Over the past twenty years, I have dealt with several major life events and have taken on everything emotionally just like I did with cancer, on my own. I had the attitude that these problems were my burdens, no one else’s.

It takes courage for a person to admit that he has a problem and to seek help.  Just as cancer requires a treatment team, coping with emotional challenges does as well. Through the invaluable support of other survivors who have battled late side effects from treatments and/or emotional distress, I recognized that I needed someone professional to talk to.  I had to get beyond the stigma of seeing a “shrink,” as I was certain I would be judged by anyone who knew this.

How does seeing a psychologist

help you as a cancer survivor?

I found a psychologist in the Counseling Center at Memorial Sloan-Kettering who works very closely with the doctors who provide my survivorship care. Antidepressants, anxiety pills, and psychotropic drugs are not pushed on me. I’m talking to a person who is educated in what it means to be diagnosed with cancer, to go through the fight, and to be a survivor. My survival issues began with my first biopsy over 20 years ago. I was not prepared for the fact that I would never feel the same and didn’t know how to accept this new reality. Some of the things we’ve gone through as cancer patients have physically changed us forever. My psychologist works with me to talk through and deal with everything that is running through my mind (usually dozens of things at a time). She does not mask my concernswith “you’ll be fine” or prescribe medications.

This is why I travel five hours each way for an appointment instead of visiting a therapist “approved by my insurance for a limited amount of visits” just minutes from my home.

Today, I seemingly have everything. My wife, Wendy, and I have two beautiful daughters we adopted from China.  We have a nice house, with a dog, two cats, and a guinea pig. And I do know that I have survived so much. For that, I am so grateful and happy. I know that with the help of my psychologist, I will continue to work through my challenges and move forward. There has been no shame, no stigma, and no judgment and

I wish that everyone could have the opportunity to speak with her. Just as my treatment required so much help beyond what I would have been able to accomplish on my own, my emotional survival has been no different.

Farewell To Two Friends

Finding out that you have been cured of your cancer, only to discover decades later, what cured you is destroying you, is like opening a Pandora’s Box. 

I went through years, eighteen to be exact, wondering why so many other long term cancer survivors had to deal with so many issues, caused by their treatments that cured them, and I was basically left unscathed.  And in 2008, I discovered by a miracle of a chance, that I was not as unscathed as I had believed.  I repeatedly mentioned to everyone pre- and post- surgery, that I had been through Hodgkin’s Disease, radiation therapy, extremely loxic chemo (especially to the heart and lungs), and no spleen, and this was all before I knew anything.  I was handled and treated as any other patient who came through the doors, before and after.

In the weeks that followed, I would discover any number of things that have happened to my body, like a volcano lying in wait to erupt, had so many things that should have been watched and had not.  And because I rarely saw doctors, there was no reason to suspect.  Once discovered, my confidence in my health was shaken and shattered.  In spite of optimism from family and friends, confidence by medical personnel that all was going to be well, I could not get convince anyone that this was more than just “in my head”.

Today I received news that a fellow survivor, someone also battling severe late term side effects passed away.  He went in for heart surgery due to issues developed from his treatments long ago, and though he showed promise of recovery, passed away.  A week ago, another friend had passed away from issues related to her cancer and treatments.  I cannot call them secondary issues, because over recent years, one thing just piled on top of another.  I know Wendy is going to dread the next several days.  After an inability to grieve nearly my entire life, since my heart surgery, I have found out how, and it hurts.  I knew Karen and Peter for so long and was with them in spirit each time they faced another issue.  It was more than an understanding.  It is pure knowledge.  And it sucks to know, not just think, that this could be me.  Pandora’s Box has been opened and while those around me try to close the lid, my hand gets caught every time.

Fortunately, treatments used today are less toxic.  Treatments come with less severe side effects, short term or long term.  And while all a cancer patient wants is to hear the word “remission” because it will mean no longer dealing with cancer, current protocol for good or bad, means that the fight with cancer will be something we do for the rest of our lives.  Oncologists decades ago did not expect us to live this long.  Society did not expect us to survive.  And many of us have survived.  In a period like ths however, the pain and fear of the known and unknown is just so difficult to understand by family and friends, co-workers, strangers, and myself especially. 

Karen and Peter, I will so miss your endless inspiration and support that you selflessly gave even in your roughest moments.  Know you will never be forgotten, and because of you, many will now know what they are going through is real and to be committed to get the care we need.