Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

Stephanie’s Words – Update


Last month, I introduced you to a young and inspirational woman named Stephanie.  You can read her story either by the page “Stephanie’s Words”, or by the post dated in September with the same title (the post is edited for both length and details).

Last evening, in Bucks County, PA, Stephanie continued her fight against Lymphoma participating in the annual “Light The Night” campaign.  “Light The Night” is a fundraiser for the Leukemia and Lymphoma Society.  But just as important, it is an opportunity to bring awareness to blood cancers such as Lymphoma and Leukemia, some, many rare but curable cancers.

Stephanie is approaching her third anniversary in remission, something I would be willing to bet, many friends and family thought they would never see.  But the heart that Stephanie possesses, let no one ever doubt the courage and strength this woman possesses.

On her poster board that she carried during her walk, Stephanie paid tribute to current patients, memorialized a patient who lost his life, and honored those survivors.  If you look on the bottom corner of the sign, she also honored me.  I am over a thousand miles away, but I cannot express what it meant to see my name and my spirit supported by someone more than a 1000 miles away.  But you know, that is the really cool thing about cancer patients and survivors.  We know that we have each other to lean on, and count on.  We know what it is like, and we know what is needed to get through this fight.

Stephanie, you rock.  Thank you.

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“I’m Not Fat, I’m Big Boned!”


Cartman

“I’m not fat, I’m big boned!”, quoted by Eric Cartman from the Comedy Network cartoon show “South Park”.  It is a crude cartoon, sophomoric and satirical.  But with my sense of humor, I did enjoy the show for the brief time that I watched it.  But his quote was one of the first infamous lines, when his little friend called him “fat”, Cartman barked back, “I’m not fat, I’m big boned!”

Long before the television show, I actually tried to use that excuse while visiting my family physician.  One of the undesirable long term effects that I have struggled the most with, is a weight gain during and following my cancer treatment.  Most people when going through chemotherapy often lose weight.  But because I was taking high doses of prednisone for the eight months of treatments, prednisone – a steroid, increased my appetite, which of course resulted in a weight gain.  This was complicated with the destruction of my thyroid from radiation treatments that I had prior to the chemo.  The thyroid is responsible for regulating your metabolism, which of course, controls your weight.  With a thyroid not working properly, it is only common sense, you would have weight issues.

In 1997, as part of an employment hiring, I was required to get a company physical.  I sailed through everything.  And then oddly, something I had never had done in any physical ever, they did some sort of bone density exam on me.  And the result was that I had “a large frame”.  Okay, I stand only five foot seven.  And I was still under the 200 pound mark, so I would never have considered myself “large frame”.  But having discussed my weight concerns with my family doctor in the past, I now had a new theory.

Large frame body = big bones = big bones weigh more

Yep.  That was my logic, and I was sticking to it.  And so, on my next visit to my doctor, I actually tried to use this reasoning on her.  Now keep in mind, any reference I have ever made about my family physician, I have always been appreciative, admirable, and respectful of her.  She also has a great sense of humor too as I soon found out after I actually asked her about the possibility that the reason I was overweight was because I was big boned.  I just found out I was a “large frame” which meant my bones had to be heavier, which would mean I would weigh more.

Officially, she gave me a response, “are you serious?” and we immediately followed a different direction.  She was not going to entertain that theory any further, and honestly, it was a reach.  After all, my bones had always been “large framed” my whole life, and at one point in my life, I was quite a lot of pounds lighter before my Hodgkin’s Lymphoma.

But I am really at a loss.  More than seventeen years later, weight is still an issue for me.  I take thyroid medication, but still not weight loss.  I cannot exercise strenuously because of other cancer treatment side effects that I deal with for my heart, lungs, spine, and muscles.  But I do at least some light exercising nearly every day in the form of walking.  I have wonderful support to help me with controlling my diet, both portion size and actual content.  I have a professional dietician working with me, who encourages me not to be discouraged by the numbers, that it is about how I feel, and how my clothing fits (called a moral victory).

Because of other long term side effects I deal with, I have had several gastroenterology tests performed over the years, and while not great news for other issues, they did not reveal anything per se as far as the issue with my weight.

My struggles as a long term cancer survivor, cardiac, pulmonary, muscular, spinal, immunological, endocrine, psychological, gastro, and more, my weight seems more of just an inconvenience given everything else I deal with in terms of survivorship.

I will keep exercising.  I will keep watching what I eat.  I also am prepared to accept that I just might not be able to help my weight any more than I am.  Maybe I am really just “big boned.”

 

Oooohhhhmmmm…


Okay.  So my post yesterday raised quite a buzz about the legalization of medicinal marijuana, blurring into recreational use as well.  I want to state something right from the “getgo”.  I have no fight in the desire to legalize recreational use of marijuana.  I do not use it, I do not plan to use it.  But in all honesty, as long as there is cigarette smoking and alcohol consumption, which is proven to kill, I will not accept pot as harmful.  As long as cigarettes, alcohol, prescriptions meds, all proven to be addictive, I will not accept the concerns about pot being addictive.  I will not accept the term “gateway” drug to describe marijuana use, when cigarettes and alcohol are the actual gateways to altering the mind.  And as for intoxicating effects, alcohol is far more dangerous than marijuana.  Yet marijuana is the only thing that is illegal.  I am done discussing the recreational use.

My views yesterday, were in support of legalizing medicinal use of marijuana for patients suffering from pain and other severe issues from chronic and terminal diagnosis.  Again, I want to make the distinction, I did not have this available to me during my times of crippling pain, but had the option been there, instead of taking addicting opiods, yes, I would have opted for legal medicinal marijuana.  This treatment option definitely would make a difference to the patient.  But let’s be clear, it would hit the pockets of Big Pharm pretty hard, and of course, we don’t want that do we?  That was sarcasm.

I also want to make it clear, I do not believe that medicinal marijuana is the only option available to treating people suffering from crippling and fatal diseases.  But it does need to be an option.  Medicine has no issue prescribing addictive medications that are just brutal when trying to stop taking them with withdrawal side effects often worse than the original symptoms they were prescribed to treat.  I have seen people be “zombified” with prescribed psychotropic drugs because the doctor felt nothing else would work.

A couple of comments that were offered to me though offered yet another option that I did not discuss.  To be honest, I believe in them as well in some cases.

meditation

Meditation is wonderful, if you have an environment that will allow it.  I often take myself “away”, and yes, I can find quite a bit of calmness when it comes to dealing with my daily stresses of life.  But it would definitely not work for some of the issues that I had to deal with.  I am also a believer in Reiki, a new alternative of relaxation concentrating on negative energy in a body.  I have to admit, that I was not a believer in this at first, but when I saw it performed on an animal, who for all intents and purposes was about to be euthanized due to its crippled condition, the animal miraculously recovered in less than two days, and actually lived another two years.

I am also a big proponent of immersing my auditory senses with music.  I place the headphones on my ears, put the Ipod on “shuffle” and I can disappear for long periods of time.  I also believe in “positive imaging.”

But the truth of the matter is this.  Not everything works for everyone.  But everything works for someone.  And that is why I made the argument and stand by my statement that medicinal marijuana needs to be legalized as an option for patients who otherwise will suffer from their ailments.  That is the humane thing to do.

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