Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

12 Jul 2020

Cancer’s Effect On The Smile


Sure, the last thing you expect to associate with the word cancer, is “smile.”  This post is not about the emotional impact on the smile of a cancer patient or survivor.  Like many of the issues medicine never prepared us survivors for way back when, was the impact that our cancer treatments could have on our teeth.  And seeing how we only have one set of our adult teeth, it is obvious we need to take care of what we have.

But we can only do so much preventative, such as flossing, brushing, and using mouthwashes with preventative care.  We can also take supplemental vitamins and make sure we eat or drink enough Vitamin D and calcium loaded drinks and food.

Radiation and high dose prednisone treatments though have a huge impact on our teeth, and our jaw bones, in strength and healing.  And it is important to know as much as possible about your individual exposure, so that your dentist or oral surgeon can make the choice that is best for you.

For me, because I have no spleen on top of everything else, there is an extra level of precaution I must take, whether for a standard cleaning, filling a cavity, or an extraction.  I typically take an antibiotic a few days before any procedure, just to make sure I do not have any stray bacteria that could cause any problems for me with an infection afterwards.

Once I get passed my initial hesitation of going to the dentist, something my dentist can attest to, is a major task.  For a while, I would have been more calm going to my cardiologist than my dentist.  No pun intended, but my dentist went above and beyond to get to the “root” of the fear.  It took her several months to alleviate my concerns, but she soon earned my trust when it came to pain management during procedures.  Most patients, if not every one, may not be aware that when you are given novacaine prior, if you still have sensation, you are able to ask for more.  I was always under the assumption, that was it.  All those years, I was given just the first dose, of a possible twelve.  She could see in my eyes, I was still having sensation, and stopped what she was doing, and asked, “can you still feel that?”  To which I answered, “yes”.  A motherly lecture followed about telling her if I needed more, and that was followed by another dose, and the procedure went on.

For the most part, that is how my simple appointments go, cleaning, exams, and cavity repairs.  It is when things get more complicated, when I hear the word “crown”, root canal, abscess… that is when things get really complicated, besides expensive.  With or without dental insurance, any of these three options are expensive, and out of my scope, not just because of money, but risk.

Because of the high dose radiation to my upper body for my Hodgkin’s Lymphoma, and the high dose prednisone I took as part of my chemotherapy, healing and stability are compromised when it comes to dental work.

I am lucky.  For the most part, I have done well taking care of my teeth, especially those in the front.  As for the ones in the back of my mouth, closer to the radiated neck area, it is a different story.  Since my heart surgery in 2008, also courtesy of radiation damage, I have had to lose four teeth, three to abscesses, and one to a broken tooth.  The broken tooth was going to require a crown, which I could not afford, and the abscessed teeth, were going to require root canals and crowns.  I definitely could not afford.

I needed to have them pulled.  Now of course no one wants to lose teeth, so then conversations began about other options, such as bridges and implants.  Still, both expensive options, and potentially quite harmful.  One of the potential risks I faced, was something called “osteonecrosis”, which literally means “death of bone”, and to my jaw, that is not good.  That left me no other choice, than to surrender those four chompers.  The good thing is, all are in the rear of my mouth, so only I am aware of that, and my dentist and hygienist.

Some antibiotics before and after, some gas, some novocaine, and I was good to go.  Sort of.

Again, as I have spoken before of healing issues when it comes to the bones in my body, the jaw is one of those bones.  There is going to be a huge hole in my jaw, that needs to heal, at the least have some help doing so.  My first two teeth, I went into blind not knowing about what I am writing about now.  But for my next two, and potentially any more that may come up, I needed to be aware of the risks of healing.

One option, and really the only one that gets offered, is hyperbaric treatments.  This involves breathing oxygen in a pressurized chamber.  For the average person, not a big deal, and often used to regenerate a person’s energy and health.  And in my case, it was recommended, rather, required before I could have any teeth pulled and after.  Besides the obvious expense I could not afford, because of another chemotherapy drug, Bleomycin, I am not able to go through any treatment involving oxygen.  A complicated issue that I cannot cover in this post.  But with this option off the table, I had no one able or willing to pull those two teeth.  Which means my situation risked getting way worse, if something developed with the abscesses.

Then I met an oral surgeon who offered a new type of treatment for the hole left in my jaw.  It is called “platelet rich plasma” or PRP for short.  Basically, they use your own blood, spin the hell out of it, leaving only the plasma, and inject that into the hole of the bone to enhance healing, and then stitch up the gum.  It is a bit more complicated, but this is now the new technology available, not just when it comes to any tooth work, but any kind of injury that would require another treatment impacted by my cancer and treatment past.  And because it will not involve any further cosmetic option, it is also less costly.

More importantly, it works.  So far, 2 for 2.  The oral surgeon not only understands my past, but respects my knowledge of what I have gone through, and that helps him to do what is right for me.  Of course I hope I am done, but the realist in me knows I am likely to have more that will come out.  But at least I know I have a good option.  And I am still able to keep that smile.

 

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
02 Jul 2020

The Power Of The Living Directive


There are two things that make us squirm to talk about, death, and how to prepare should something go wrong during an illness or injury.  We go through life assuming, or perhaps just wanting to ignore the realities, because, “that kind of talk is for old people.”  I know that is the way that I thought, even having gone through cancer.  I was immortal, or at least for as long as I could tell, for decades to come.

That thinking changed obviously in 2008 with my heart surgery, and the realization that it was likely I would face many other challenges to my health.  I could no longer make it about my age for my reason to put off the discussion of preparations.  I got lucky the doctors saved my life while I was in the grips of a silent killer, a “widow maker” cardiac event.

For the sakes of my children, I needed to not only have a will for if I died, but a living directive if something would go wrong with any procedure or any kind of event.  Time was not going to wait for me to get old.  For me, it was fairly simple.  I made it very clear, no artificial means to keep me alive, and not to let me be in pain.  I have had to make some changes in both will and living directive following my divorce, but I have kept everything pretty much the same.  I am not a complicated individual.

For others, this may not be the case.  When my father was in the process of being diagnosed with lung cancer, he made the decision to make me his medical proxy.  He did it for two reasons.  One, my extensive history and experience with medicine (in spite of not being a doctor), he knew I would be able to explain things to him clearly, as well as help him to express what he needed to have explained.  The other, having watched both of his parents suffer in their ends, he believed in me, that I would not let the same thing happen to him.

This came at a personal cost for me, because, being in that position, I could not allow myself to feel any emotions that might jeopardize anything my father wanted to happen, or not happen.  This loss of emotion admittedly makes me realize I can have quite a cold personality in situations like this, almost robotic.  But when my father was in his best mind, he made it clear to me, what he wanted, and what he did not want to happen.

If you are hospitalized, or having to go through any medical challenge like cancer, you are likely to face these life and quality of life decisions.  As I said, I have things in place.  But recently, I came across some information, once provided to me years ago, called “Five Wishes.”

This pamphlet is a very well thought out document, to help plan out the “what if” so that there is no mistaking what a person’s wishes are.  I know my personal physician has disagreed with my directive in that I have made it too simple, too black and white.  But it is how I feel.  Don’t get me wrong, I do not plan to be in that situation anytime soon.

Five Wishes is a form of living will that talks about your personal, emotional, spiritual, and medical needs.  The one thing that this form makes the author aware of, is that there are still some states that will not recognize the document or your wishes.  That is a big deal.

The first thing necessary to do, is like my father chose, someone to make decisions in the event he was not able to do.  This is a big deal because that representative has to put all personal biases and beliefs aside to respect the wishes of the patient, no matter who it is.  And that is a big deal, it does not have to be a family member either, as family members, not me in my dad’s case, can be too emotional when it comes to decisions.

I will tell you, the hardest part for me to get family and others to understand, was when the time came, to stop giving him access to certain maintenance medications (like for cholesterol, etc.).  Because legal decisions had to be made in his care, handled by my stepbrother, insurance changes to allow my father and stepmother to be in the same care facility, and the fact that he was going to die, made these medications unnecessary.  But other challenges would come if a serious illness like pneumonia were to develop or some other issue.  It was difficult for others to understand, there would be no treatment, to prolong his inevitable passing.  A simple concept, not to allow him to recover from one illness, to eventually suffer as the cancer spread causing more pain than what could have spared him.

There are a lot of other responsibilities that this advocate must take on.  Keeping the emotions in check is not only necessary, but unavoidable because of all of the responsibilities.

You should decide what efforts or treatments are done to keep you alive.  This is where my doctor and I sort of disagree.  The two most common terms you quickly become familiar with are DNR (do not resuscitate) or being put on life support.

With Covid19, this becomes a very difficult reality for me.  I have made it clear, I do not want to be kept alive on life support mechanisms.  But if I were to contract this virus, because of my frailties, there is more than a good chance I would end up on just that because of what the virus does to the lungs, which mine are compromised.  It then becomes a choice if the life support is used to save my life, versus sustain it.  But my directive says what it does.  Therefore, I need to avoid this virus at all costs.  Needless to say, a fatal end caused by this virus, your five wishes mean nothing.

Two other aspects or wishes pertain to the humane aspects of this directive, comfort or quality of life, and what is expected from others, especially loved ones.  From medicines to control pain, to location of where the passing might occur, and the overall atmosphere of those around the ill person.

The final wish deals with the patient themself, and what they want their loved ones, family, friends, and in most cases, their caregivers to know.  These can be kind words, actual gifts, perhaps asking for personal differences to be resolved before passing, and of course, post end of life plans.

No, this part of life is not easy to talk about, let alone go through.  And there is no minimum age that is required.  Though definitely as you get longer in the tooth, it definitely becomes a priority.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
26 Jun 2020
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Living With Survivor’s Guilt


Have you ever had one of those moments, either walking or driving by someone or something, and your head snaps back because you thought you saw something but were not quite sure?  That is what happened to me yesterday.  I was flipping through television channels, a skill that I have mastered, knowing I only have to spend less than a second to know if it is going to be something that I might be interested in.

The man pictured above had survived the worst that Covid19 could do to him short of dying.  He experienced the Acute Respiratory Syndrome (ARS, the pnuemonia diagnosis normally fatal) as well as sepsis, which by itself is fatal.  At the age of 37, he spent weeks in the hospital.  In his interview, he says, “the hardest part for me is seeing how many people die from Covid19, why did I live?  And everybody else died.”

This emotional issue is called “Survivor’s Guilt.”

There are two myths about “Survivor’s Guilt.”  The first, often this term was used for those who had served in the military, previously called “shell shock”, “battle fatigue,” among others.  But at some point, during the 1980’s, some events in our history resulted in people having survived natural disasters dealing with emotional survival issues especially when there were mass casualties were associated with it.  And then, upon the completion of my cancer treatments, though not diagnosed officially until 2008, I developed what was definitely called “Survivor’s Guilt.”

Myth number two, just because someone experiences “Survivor’s Guilt,” does not mean they wish that they had not survived, want to die, or are ungrateful.  Quite the contrary.

I first can trace my Survivor Guilt issue, to the first cancer patient that I counseled following my cancer treatments.  She was a fourteen year old girl at the time, and she had the exact same cancer that I did.  I have her story, called “Jennifer’s Story” on the page section of my blog.  But in summary, she would not survive her Hodgkin’s Lymphoma.  She would never hear the words remission.  And as I visited with her over the three years, I often sat across from her mother while visiting with Jennifer, wondering what might be going through her mother’s mind as I sat there, cured of the same cancer her child would die from.

Jennifer was the first experience I had with survivor guilt, and I would have many more experiences like this over my thirty years.  And it would not just occur with Hodgkin’s Lymphoma directly, but the first half of my thirty years of survival were issue free, whereas so many I knew were dealing with harsh late developing side effects, but not me.  Some would die as well from those issues.  And then of course, I would join that club of long term survivors with late effects, and deal with at least four issues that were serious enough to cost me my life if not dealt with promptly and correctly.  And yet, here I am, while other survivors did not survive theirs, and of course, still other Hodgkin’s survivors as well not making remission.

“Why do I live, when others die?”

Make no mistake, I am definitely glad to have survived all of these years.  I have been blessed with two wonderful daughters and watch them grow, and I even count on being able to see many of their adult years.  I believe that I have a good team of doctors and specialists, and just as important, a support network of survivors that no one could have imagined back before the 1990’s and the internet.

I just wish that every one  that I crossed paths with, could have had that same opportunity as me.  And I cannot make those feelings stop.

It took a therapist specializing in cancer survivorship to explain “Survivorship Guilt.”  I spent years in therapy for this, to discover that there were other issues associated with my cancer journey that complicated things.  And then there was life as well and the many issues that came up.  Soon, my cancer issues and survivor guilt often found themselves taking a backseat to employer related discrimination issues, other family member medical issues, family deaths, and divorces.  Sure, those not going through cancer, deal with all of those issues on a daily basis, some deal with all, some maybe one or two of the issues.  But when you throw in cancer, survivorship, and it effects, it really complicates things, and that is when peer survivors and professional therapists make a difference.

But wait, “do you mean seeing a shrink?”  Right, that stigma and stereotype, only crazy people need to see a psychiatrist.

I promise you, there is not one survivor I know, or have ever known, who has had the counsel of a therapist that would have matched the stereotype or deserving of the stigma.  Some of my fellow survivors find it sufficient just to relate with another survivor, but some have feelings much stronger, and I encourage anyone who feels that way, needing more than their peers, their friends, even their significant other, to seek out a therapist.  It really makes a difference.

I still have my survivor’s guilt after thirty years.  I have said goodbye to so many.  But I have so many that remind me every day, that there is a reason I am still here.  Because I offer them the same support, and remind them of the same things, that there are so many that depend on our survival.  Until any of us possess the power to make the sun rise and set, form ocean waves, or make snow fall, we just have to accept that things happen the way that they do, just because.

But there is going to be a new large population of people who are going to survive this horrific virus, Covid19, and because of how contagious it is, many are likely to lose loved ones and friends.  And like the gentleman above, left to wonder why them, and not the others.

As a country, we need to do better to offer better emotional help not just to those with the obvious issues, but also those who survive traumas whether it be war, a car accident, a natural disaster, cancer, or a pandemic.  There are too many of us that struggle with this to just be forgotten to deal with on our own.

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

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