Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2014”

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
09 Mar 2014

How Far We Have Come


An odd thing occurred to me today while visiting with my father in the hospital. I was nearly run over by a robot. Okay, maybe I am being a bit dramatic. There was no chance of me being run over by the robot, or even blasted with its powerful lasers.

Okay. I was raised with Twiki from Buck Rogers and of course R2D2 from Star Wars. It should come as no surprise that after Star Trek foretold of flip cell phones with their “communicators”, that with Twiki and R2D2 we would have robots doing human tasks.

The concept does not always work. I have seen my employer throw away millions of dollars trying to replace the hard work that humans do in an effort to be efficient and replace human workers. But how about when the robots actually work. I saw the medical “R2D2” this evening on my way back from the restroom. There had been some nurse work going on in my father’s room, so I stopped outside of his doorway to wait for everyone to leave. And there it was.

Creeping behind me ever so quietly was this box on wheels, but no one had been pushing it. It rolled by itself. There was no tracking on the floor for it to follow. It stopped about a foot and a half away from me. I was not sure if I should move out of its way as if playing some sort of game of robotic chicken. But the delay from my thought displayed something amazing. Its rollers on the bottom of the cart had turned approximately forty five degrees and then the unit rolled two feet. The rollers then turned forty five degrees to the left and the unit rolled, stopped and straightened and continued on its way another four feet until it had arrived at the nurse’s station. As it stopped, it announce, “your delivery has arrived.”

The robotic cart had been delivering medical supplies or prescriptions for the patients on the floor. The nurse put her combination into the lock and the unit opened. The nurse took her delivery, closed the box back up, and the unit continued on its way. It was amazing to watch. I had to wave my hand by a sensor on the wall to open the door to the patient room corridor. The doors just opened for the robot. I had to push buttons to call the elevator. The robot called the elevator directly.

I have seen plenty of television shows and movies and looking back, it is amazing the things we saw in science fiction that have come true today. It no longer seems far fetched to watch a movie and wonder how long before we see cars that fly and other inventions. Of course I would rather see a movie that discovers a cure for all cancers, and then hope scientists and inventors come up with the same idea in the near future.

Posted in Cancer, Education, Inspired By..., Recreation | Leave a comment

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