Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Another Needless Tragedy


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The news just came across my Facebook feed.  Another cancer patient has lost his life, due to side effects from a drug that was supposed to save his life.

Now let me state first, I believe 100% in chemotherapy.  Without it, death from cancer is almost a certainty.  And while the drug did what it was intended to, the side effects, and how they were handled by medicine, are what led to his passing.

If there are two times that I get pissed off as a cancer survivor, it is when a long term survivor passes without getting the proper care necessary to handle our unique conditions due to damage caused by extreme treatments decades ago.  The other, is when a current patient survives their treatments only to succumb to side effects and the lack of sufficient follow-up care, and also the proper handling of the crisis due to lack of education or experience.  Another young man has lost his life.  Another young wife is now a widow.

You should be pissed off too, whether you are a cancer patient or survivor, or not.

There is no reason whatsoever, in this day and age, that when medicine knows the potential for a side effect, even if it happens less than .001% of the time, that one time that it does happen is one too many.  This young man survived his cancer, but when he fell ill from the treatments, the response to his care, gave him exactly the opposite of what only a few doctors know not to do, and the result is a tragic loss for yet another family.

Please listen to me, chemo and radiation cure cancer.  They really do.  They are not pleasant to go through, but to leave untreated, is almost certainly not going to end well.  But more than just a handful of doctors need to have the knowledge of what not to give a patient who has been given a drug or treatment that affects a particular body organ.

I am open and willing to use “Paul’s Heart” to get this message out.  Tell me your story and I will publish it here.  I will share it on “Paul’s Heart” Facebook page.  After dealing with late effects myself for over seven years, we are no closer to doctors having the knowledge they need, or perhaps even the protocol to use.  We as patients, survivors, and caregivers need to take this on ourselves.

I want to help.

When Emotional Support Is Needed


I came across an article that I had published by Bridges, a quarterly newsletter through Memorial Sloan Kettering Cancer Center in New York.  The article I had written was about the addressing the need for emotional support before, during, and after cancer.  Of course, the article can pertain to anyone dealing with a severe illness or disease.

I apologize, I was trying to get the link directly, but I sometimes have my limits with technology, so here is the scanned copy of the article, as well as the text printed below.  (Please keep in mind, this article was written 4 years ago, there have been some changes in my life.)

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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 diag
nosed 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 concerns with “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. I have two beautiful daughters we adopted from China.  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.
The MSKCC Counseling Center welcomes all cancer patients – whether or not they are receiving care at MSKCC. For more information, or to make an appointment, please call 646-888-0100.

A Comment To Stand Alone


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A couple of weeks ago, I posted a special “open” letter written by a fellow Hodgkin’s survivor.  It was written to hopefully inspire those in oncology to recognize and deal with some of the emotional needs of cancer patients.

I am always willing to allow comments to go through on posts, but there was one post, that received a comment that I did not share, until now.  I did not want to the comment to take away from what the intent of the post was trying to get across.  But that does not mean that the author of the comment did not have a point.  I have edited the comment slightly for my own reasons, but here is the bulk of the comment:

“Traumatized by her first encounter with the commercially-motivated sick care system, she reacts. That is nice.. BUT, the far bigger issue is missed here.. The methods applied with her, “Chemo”, is NOT what she THINKS it is. Far from being “a therapy”, it causes much more premature deaths, destruction of immune systems AND “implants” highly carcinogenic elements within her body, so her prognosis is, let’s say, unfavorable. Oncologists fail to inform patients of the long term risks, and if you care to read them, on the Oncology sites, they “hide” this very crucial one at the bottom, since they know most people get tired of reading anyhow, so there it is- http://www.cancer.net/survivorship/long-term-side-effects-cancer-treatmentPlease READ carefully, all the way down , where they hide the fact, it causes more new cancers.. called “secondary cancers”.
Oncologists are ANGELS. The only question left to answer is weather one wishes to meet the angels before his/her time..”

I have not disclosed the author of the comment until I receive permission.  But the author does make a valid argument, and from the tone that it was written, perhaps a personal one.

I have seen enough in my 25 years, to know that not all cancer stories have happy endings, and yes, many continue on as nightmares.  But compared to the decades ago, when most of us were only aware of cancer’s automatic death sentence, there are many more success stories than unfortunate tragic endings.  In just the past two years, I have lost more than five close friends and family due to either cancer or complications from the treatments, short term and long term.

All the more reason, we need attention brought forward, we still need better and safer treatments.  I am currently looking for my original treatment sheets from 27 years ago, but I know what I read way back then “risk of pericarditis and secondary cancer such as leukemia.”  That is all I was told.  Back then, that is all they knew.  But they missed that mark by a ton (I discuss all my issues on this blog).  And just recently, a very close friend of mine is grieving for the loss of her sibling, succumbing to complications caused by treatments received decades ago.

No, medicine is not perfect, and neither is how we treat cancer.  But for now, we have to accept that what has been scientifically proven to work, and better than the alternative for the most part, and fight with all we have.  There are alternative and complimentary treatments as well, but while they may be safer with side effects, they do not have the scientific backing.  I want to make it perfectly clear, I am not pro “big Pharm”.  But having been in the world of cancer half of my life, I have seen the progress.

It is my hope that some day, and soon, we can finally have the better surveillance to discover the brutal and tragic side effects that sometimes occur.  One battle is enough for someone to face.

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