While I Wait

The only thing worse than being told by your doctor than “I want you to have…” is waiting after you have had…

I am probably well into triple digits of medical tests done to me over the years.  To the uneducated and ill-informed, I would be one of those patients putting a strain on medical costs.  To my daughters, the tests are what keep their father alive.  So for the fifth time in four years, and the fourth time over the last year, I am faced with the possibility of another medical malady thanks to the cancer treatments that saved my life.  Of course, that means another expensive test.

Admittedly, I can be a bit of a baby, in fact, go into a full-blown panic attack when it comes to the sight of a syringe.  Surgical stuff, no problem.  You want to go in through where?!?  Problem.  Needle what?  Uh oh.  There are countless stories of my scenes with syringes.  But for this particular test, the needle will be going into my neck.

An ultrasound of my thyroid reveals a nodule, a solid something something with vascular yada yada.  I actually lost all track of what was being said to me, once I heard the word biopsy.  But having had exposure to radiation to treat my Hodgkin’s Disease decades ago, especially to my neck area, left me with an increase risk of thyroid issues.  Out of all the late side effects I have had to deal with over recent years, the thyroid has not really been on the radar before.  I have been on Synthroid (Levothyroxine) for hypothroidism courtesy of my treatments, even before I finished the treatments.

A needle biopsy (technically referred to as a Fine Needle Aspiration – FNA) had been ordered a couple of weeks ago.  Clearly the needle would be going into my neck.  I had a needle in my neck before, actually it was a port, during my heart surgery, but I was out cold for that.  I knew I would be awake for this one.  It can take up to a half an hour just to draw blood from me because of my irratiional aversion to needles.  But in spite of the circumstances, there is a calmness about this particular test.  I have done my research, anesthesia, the biopsy lasts less than a minute, extremely small gauge needle (thickness).

I arrived at MSKCC yesterday, not having a good start to my day.  I overslept in spite of two alarm clocks.  So I missed my train, to catch my bus to NYC.  I now had to drive, and because it was later in the morning, I was going to hit major traffic, especially at the Lincoln Tunnel.  I needed to get to this appointment on time.

I did arrive on time, in fact a little early.  Okay, got the karma back on track.  I put the robe on so as not to get my shirt messy.  Why is it that in the same hospital network, there are different quality gowns you make us wear?  Anyway, the tech comes in, does another ultrasound to show the doctor, and then the doctor comes in.  I’ll call him, Dr. G.  He proceeds to tell me what he has probably told hundreds of patients, “I do not like to use anesthesia.”  Cue the tire sounds of screeching to a screaming halt.  Normally, I would have been back on the NJ Turnpike before he even got to the next sentence.  “It is a very small needle.  If I inject an anesthetic first, there is a chance that could cause a pocket of air, which would make it difficult to guide the needle with the ultrasound wand.  Besides, does it make sense to give you a needle (a bigger one) just to do the small one?”

Surprisingly, it is harder for me to eat vegetables than it is to have tolerated this particular test.  Although clearly one thing that made it easy, I did not check out the surroundings before I got on the table.  The last thing that I wanted to see was the equipment that would be used on me, especially the needle.  Prior to my radiation therapy, I had four tatoo dots placed on me to line up the linear accelerator (the radiation machine).  I assumed this would be the same level of discomfort, but maybe a little more intense as I have had a bone marrow biopsy and know what is involved in aspiration.  All that had to happen then, was make sure the insertion point did not swell up with blood (a hematoma), or get infected (something I do not take for granted not having a spleen).

I will be okay with any diagnosis or none.  I will be okay with any plan of treatment or correction, or none.  But some things do concern me that this has the potential to be something serious.  A needle biopsy on a smaller sized nodule than usually performed.  A phone call from a very close, trusted, and valued family physcian following up on a report for a test that was not ordered by her, but results shared.  I am trying not to get ahead of myself.  You would think with my being so cooperative in such a potentially stressful situation, karma would give me a break, and an earlier phone call with the results.  Yet here I wait.  As long as I get them before the weekend.  That really would suck.

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.