Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

13 Mar 2014

NYC Hat Trick Complete


Do not get all excited… I am not making reference to the Rangers, I am a Flyers fan. But I had three very successful days in New York City, hence why I say “hat trick”, a hockey term for three goals scored by the same player during a hockey game.

I travel at least once a month, and depending on the amount of appointments, sometimes days for my follow up appointments for cancer survivorship at one of the best cancer hospitals in the country, Memorial Sloan Kettering Cancer Center in Manhattan.

I get asked all of the time, why I travel hundreds of miles to seek out my survival care when I am surrounded by many hospitals locally. It is simple. Cancer survival has not caught on in this country yet where survivorship is a specialty in medicine. Years ago, cancer survivors were lucky to survive five years. Today, they live for decades as I earlier in the month. But the research and education of survivors like me is still a new concept and only a relative few have taken extraordinary measures to study the long term effects of cancer therapies on people.

While the majority of my testing can be done locally, the real important stuff I leave to the experts in Manhattan, one of which has studied Hodgkin’s Lymphoma for over thirty years and heads the survivorship program at MSKCC. He travels around the world educating others on the needs of long term survivors. I deal with a dozen different disciplines of medicine for my needs and there is no one I trust more, other than my primary care physician who I count on to be my advocate with the uneducated here if a need arises.

The great thing about dealing with MSKCC is that they know I have to travel a great distance to get there. A dear friend once told me, “don’t let economics determine your health care.” So over the last three days, I had three different appointments and two procedures, all of which are part of my survivorship plan. On Monday, I dealt with my survivorship guilt and dietary needs. On Tuesday, I underwent a colonoscopy and endoscopy. And today, I saw a dermatologist for the first time ever. Considering the radiation level I was exposed to (4 times the lifetime maximum), the doctor was shocked how “clean” my skin looked, not one hint of basal cell carcinoma.

There are some who might say, “don’t you ever get tired of seeing all these doctors when there is nothing wrong” to which I usually reply, “I don’t want there to be anything wrong, and they have done their job well.” I am lucky that I have so many professionals looking after me and my survival. There are literally millions of cancer survivors out there who do not have any follow up protocol or plans because they do not know that many of their issues are caused by their survivorship.

There is a reason I go to MSKCC. Because the chemotherapy and radiation therapy, and diagnostic surgeries changed my body. And unless you are knowledgible with radiation fibrosis syndrome or other side effects like it, makes no difference if you are the world’s best surgeon if you are not prepared for severely scarred lungs or veins and arteries, dealing with compromised immune systems. Yes, I go all the way to NYC, just in case a mistake happens and I have experienced people who know what to do with that “oh shit” moment.

I am waiting the results from yesterday. But today I got an “all clear” and “see you next year” from today’s appointment. I like that. My really big appointments are coming up in April, which also happens to be when the anniversary of my surgery comes up. So it is that month that all my cardiac testing gets done, as well as my pulmonary, and see the big dog in charge of my care for my annual follow-ups.

I needed a break as I have been dealing as caregiver for my father battling lung cancer. And it has been difficult juggling between his needs and mine. And now that I am done with my appointments for the next six weeks, I can give him my full attention to get him through his battle.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
12 Mar 2014

Cross This Off My List


Part 1 – National Colon/Rectal Cancer Month

This month is the annual push for colonoscopies to hopefully prevent a cancer that can be prevented. Not only be prevented, but treatable when caught early enough. Yet so many will ignore this life saving recommendation. For the second year in a row (it was only supposed to be once – but my body did not cooperate with the “clean out” so it had to be repeated), I underwent a colonoscopy today. I also underwent an endoscopy at the same time. More on that later.

My prep was a little more involved this year because of issues I had last year, but for the average person, it is usually just a heavy dose of a laxative the night before the scoping. Depending on the method, yes, there is a large quantity to drink, but it is doable, and many times, you can drink any fluid to mix with the drug. Overnight, you sleep it off. Then you go for the procedure. Most people will be put into twilight anesthesia, meaning you will not remember anything other than the time on the clock on the wall. Again, because I have complicated cancer-related issues, I cannot do twilight, so I am out cold. I have no idea what has been done, but for those who are afraid of this simple test, here is what I felt like afterwards… nothing. I did not walk funny. Nothing leaked out of my butt (sorry for the graphic, but trying to prove a point for the fearsome). Except for a little groggy, I was good to go home in fifteen minutes. I have no recollection of this afternoon. But here is what I will find out and know.

I will find out if polyps had been removed. If they were, they will be tested. If cancerous, that is one road to cross, and hopefully caught early. If not cancerous, the polyp was prevented from becoming cancer. See the urgency of this test? Yet many of you will still blow this recommendation by your doctor for literally no acceptable reason. If your doctor recommends it, you are a fool not to do it.

My situation is a little more complicated because I have other underlying issues. But then again, just like the average person going through a colonoscopy, prevention and screening for my long term cancer survivor issues is the reason I went through my “pig on the spit” day. I mentioned to my doctor before I went out, all asked was to make sure that my breath did not smell like shit when I woke up. Today, just like last year, I went through two procedures at the same time, a colonoscopy and endoscopy. And as my “pig on the spit” comment implies, cameras went through both ends.

The purpose was two-fold. One, to make sure there is no secondary cancer to my Hodgkin’s Lymphoma. Two, to deal with situations that can actually lead up to the development of secondary cancers for me. The extreme treatments I went through more than 25 years ago have left certain areas of my body at risk for some nasty issues. But the great thing is, I am under constant surveillance to prevent, or catch if necessary, things before they get bad, unlike what happened with my heart nearly six years ago.

Radiation reeked havoc on my esophagus. After several years, I have developed some slight swallowing issues, as well as some reflux problems. Long story short, the old esophagus does not work as well as it should. I have two things called Esophogitis Esophanil which I do not fully understand, and honestly neither do the doctors, and something called Barrett’s Esophagus. This is the one factor being watched because it can lead to cancer of the esophagus. Usually biopsies are taken, and occasionally other tests are done just to make sure. So far, neither issue has advanced dramatically. So I do not expect the news to change much if at all when I hear.

The colonoscopy is done because of the increased risk of colon cancer for me from going through the strong types of treatments. I do know polyps were removed last year, and I expect that some have been removed this time. The thing I am grateful for was that the polyps last year did not have the chance to turn cancerous. Hopefully the same result occurs this year.

Do you get my drift? If you can prevent cancer, why not do it? And this is one that can be prevented or if necessary treated if caught early enough.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
08 Mar 2014
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We Need To Give A “Crap”


If you have followed my Facebook page, almost on a daily basis, I have “shared” posts announcing Colon/Rectal Cancer Month recognition. This is a big deal to me, but should also be a big deal to you, male or female.

Now if you are saying, “but Paul, you didn’t have colon cancer. What are you worried about?” And for the most part, you would be correct. I did not have colon cancer. But the treatments that I went through for Hodgkin’s Lymphoma left me susceptible to secondary cancers such as thyroid, lung, esophageal, leukemia, and yes, colon cancer. In fact, the driving force behind my internet outreach for cancer patients was a woman named Linda. It was her mission to make cancer survivors aware of the importance of colon cancer screenings, called colonoscopies. The internet support group that we belonged to had already lost so many fellow survivors to colon cancer, and she too would be diagnosed with, and lose her life to colon cancer.

For years, I have dug my heels in the ground, I was not going to let anyone shove a tube up my ass. Yes, I reduced my opposition to the lowest and crudest objection. But I was clear, my “out door” was not an “in door”. I was not alone in my stance. At work, many of my coworkers also voiced their opposition to any roto rooting. While neither gender is crazy about having this done, I have found that only the male population has any problem revealing their aversion to the painless procedure. And considering the test is one that can save your life, a common reason overheard, and a bigoted one at that, afraid of waking up “gay”. That is right. There are some men who are actually afraid of coming out of the anesthesia with an urge that they have been turned into a homosexual. This is not only a horrible thing to think, but it is stupid, and it could cost you your life if you avoid this simple test for fear of something that is not only not true, but can never happen. I am not even going to carry that discussion any further.

It would be easier to understand as a man, that we might simply be uncomfortable with the thought of laying on a table with our bottom exposed, but that would not be met very well by the millions of women who climb up on a table, placing their legs up in stirrups to be placed on exhibition for their doctor visit. And they are not normally anesthetized. I am one of the few men who can testify as to how that feels, not because I have ovaries, and for the record I do not have them, but having had to deal with a kidney stone, I have had to have my legs placed up on stirrups for a wonderful (NOT!!!) procedure called a cystoscopy. You can Google what that is. But I will say, that was unanesthetized. And if I could handle that going in an orifice that was definitely not meant to have anything inserted, I could certainly undergo a colonoscopy for which I would be anesthetized.

I also did have a reason for undergoing my first colonoscopy last year, and not just because it was a smart thing to do. One of my late effects that I have to deal with from my cancer treatments (actually two of them) pertain to my esophagus which was damaged from radiation therapy, often affecting my ability to swallow foods, and previously, unable to swallow liquids at its worst when it flared up. So I actually undergo both colonoscopy to see if there is anything blocking down there forcing the issue, but also, an endoscopy to see if my esophagus has worsened for what is diagnosed as esophagitis and Barret’s Esophagus. I take a medication to keep it under control, but the truth is, I have an increased risk of esophageal cancer. So, two tests, two purposes, only one result I want, negative.

Last year’s tests did not go as planned, inconclusive. It seems, and this is the reason many do not want to undergo a colonoscopy, my “prep” or cleanout did not go well enough for them to get the pictures necessary. It is hard to believe that drinking two liters of fluid mixed with 37 dosages of laxative did not empty me out enough to get the pictures necessary, but that is what happened. So it was decided that I would repeat this year. Only this time, I would have to do a “super prep” which has meant me drinking a laxative for two weeks already with the normal prep yet to come.

Here is how important this test is, not just to me, but to you as well. I am dealing with caring for my father. I cannot put this test off any longer than I already have, because cancer does not wait. And the sooner it is caught, if there is any, the better chance of beating colon cancer. So, being a master of multi-tasking, I will have to really plan out carefully a trip to Sloan Kettering for my father and I, because my tests are the following day, and I must begin the aggressive “prep” before I even get to leave Manhattan. It will literally be a race against time, pushing cotton, “prairie doggin”, turtle popping out of the shell. I expect my three hour drive to stretch out to five hours until we get home.

I do not expect to hear the words cancer. This test is about prevention. I feel okay. My swallowing issue is minimally inconvenient right now. But as long as I have “prepped” enough this time, I expect the photos to be good, and the news to be negative. And there is comfort in knowing those in my life will not have to hear that I am dealing with cancer again, for at least the time being.

But even if you do not have the increased cancer risks for whatever the reason, other cancers, obesity, if your doctor wants you to undergo a colonoscopy, you need to do it. The test can save your life. And no foolish notion can ever justify me attending a funeral for something that could have been dealt with. The test itself does not hurt. Ignoring it does.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart

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