Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

Guest Thoughts On A Survivor


A little over a couple of weeks ago, I wrote a tribute for a fellow long term survivor of Hodgkin’s Lymphoma who had passed away, following a stay in the hospital due to an injury.

I had received so many comments about Kimbra’s passing, that I wanted to share some of those comments.  You see, when I write about a fellow survivor, it is simply from my perspective.  I do not think for one moment ever that I am the only survivor that someone has touched, because as I struggle with my own emotions in the passing, I often do not get to appreciate the beautiful words, even more so, the beautiful ways that someone has had an impact on someone else.  It was really overwhelming to see all of the warm words offered for our fellow survivor Kimbra.

I have been at this a long time, over thirty years.  And the longer I am in this, the more survivors I get to meet and learn about.  And just when you think you know them, at least within our group, that we all rely on each other, we learn there is just so much more than we thought we knew.  With that, I would like to share with you, some of the words of consolation, grief, and inspiration shared with me for Kimbra, from the words of her fellow survivors.

Susan

Yesterday another friend who is also a Hodgkin survivor diagnosed prior to age 18 died unexpectedly. Kimbra was kind, loving, helpful to others, and after a career as a medical librarian, was a wealth of knowledge to our group. In honor of Kimbra’s life, I share this personal essay I wrote that was published three weeks ago in the Journal of American College of Cardiology (JACC). Here’s an excerpt: “Two important mentors from the online Hodgkin group have given me hope in spite of an uncertain future. Dave (from Australia) and Dolly (from Texas) taught me how to face death: to speak of it openly, and to love with an open heart. They each wrote of savoring life moment by moment, and each lived fully and courageously to the end of their lives. From them I learned that someday we will die, but on all the other days, we will not. The key is to keep that balance in perspective. They showed me that among the collateral damage there is a certain collateral beauty: although we may not be cured, we can be healed.” Kimbra’s friendship is one of those collateral beauties.

(I am posting the actual link to the JACC story that Susan wrote)

https://cardiooncology.onlinejacc.org/content/2/1/149?fbclid=IwAR0fkfuUC2THdpWm7YJwKW3AuqwUOoBP4NSKJND0cpGoYI22KTTIX-cu-2Q

Cathy

I’ll miss her spirit here in our groups she helped us all with kind encouragement and vast knowledge. I’ll miss our late night chats.

Lori

Rest easy now, my sister in Hodgkins….you fought the good fight and your words/deeds will be defined by your life, not by what happened to you.

Kathy

We were all touched by her beautiful soul. The giver of knowledge and the seeker of light. May all who loved her especially family and friends remember the special gift bestowed on each of you…she survived and will always be a survivor in our hearts and souls.

Hope

She was a true friend to many.

Sarah

I’ve met survivors in all sorts of settings over the years. Yet, none have I ever become so close with so quickly as Kimbra. We had several long late night chats early on after we connected in another HL survivor Facebook group. I learned so much about HL survivorship from her and always appreciated her humor, love of literature and caring and helpful attitude. I am lucky to have gotten to know her. I will miss her and clearly she will be missed by others she knew in-person and online.

There are so many more.  But you get the idea.  On our support pages, our numbers are in the hundreds.  And while many many not write, just read, each and every one has an impact on us at one point or another.  It is an even bigger blessing if that impact was personal.

Kimbra is now among so many that I have had to say goodbye to over the years.  It does not get any easier.  And in a way that I think Kimbra would want, as others before her, our emotional reliance on each other only gets stronger as does the bonds between us.  Whether we offer words of encouragement to each other, or have an experience that might give a potential direction to deal with one of our unusual health situations, it is survivors like Kimbra that keep us going.

Cutting Corners And Fast Tracks


When you think of the phrase “cut corners,” you will normally think of ways to either save time or save money.  And depending on what you are trying to to “cut corners”‘ on, it can be either a good thing, or a bad thing, especially if someone gets caught.  In meeting a household budget, one might decide to do one less night out, or perhaps buy one less treat on the trip to the grocery store.  Driving in rush hour traffic, or late for an appointment, it only makes sense to make a different turn than originally planned, or worse, against the recommendations of your GPS, to either save time or distance.

We are an society that loves instant gratification.  We hate to wait for things.  Disney was one of the first pioneers to come up with an organized method to speed things up, or at least make you think you have saved time, the “Fast Pass.”  Think back to elementary school, while waiting in line, and then having to go to the bathroom, we would ask the person either behind us or in front of us, to “hold my spot.”  That is the Disney “Fast Pass.”  You check in for a ride that traditionally has a long line, like hours long, and it gives you a time to come back later, bypassing the line, allowing you to enjoy other attractions at the park.  And as long as you do not mind just walking to all of the attractions you would like to ride, check-in, then return later in the day, this will work out for you.  When it is your turn, you get to go right to the front of the line, without having to wait in a line, like the rest of the other parkgoers.

There are times when cutting corners are a good thing, and when saving time is a benefit.   To expect these attitudes however to apply in all parts of life, is not only unreasonable, but dangerous.

I used to work in an industry  that is heavily regulated.  And for good reason.  It affected people’s lives.  On a daily basis, corners would be cut from allowing proper time to complete a task, training a co-worker properly, to diluting chemicals.  Now probably in many cases, it may not have been a big deal.  In others, contamination risks, more importantly, potency and accuracy may make a difference.

We, my co-workers, were expected to do whatever we needed to do, to complete our daily work assignments.  Often times that meant cutting corners in time and materials.  At times, management even forced these situations when it would come to “time points,” to avoid paying overtime, shifting time points into regular working hours.  Now for those who do not understand that importance, think about a dosage and how often you take a medicine.  How do you think, those intervals came about?  How would you feel if you found out, that occasionally the testing behind those products was not spot on, just for convenience?  You can now see how cutting corners can easily be a bad thing as well.

I was notorious for being a pain-in-the-ass, for refusing to cut corners.  Besides the fact that I did not think it was the right thing to do, my signature went on every document of every task that I completed, and I knew that if something went wrong, it would get thrown back at me.  And I could plead all that I wanted, “management made me do it.”  Who would inspectors take the word of more, a supervisor or a peon employee?  Deep inside, I knew I was doing the right thing, although my peers and management felt differently.  I often found myself not getting certain assignments because daily, it was all about quantity of work getting done, not quality.  But my acknowledgement would come at inspection times.

When inspectors would come onto plant site, that is when I got tasks that I knew were important to the company, and that they were needed to be done correctly and thoroughly.  And with the majority of my other co-workers routinely doing this via “short-cut”, they may not have remembered all the things that needed to be done, or correctly.  All you have to do is look at your local food inspection reports.  If you do not want bad attention, you put your best people on to make up, or cover up what you have been doing.

For me, when I worked, there were no corners to cut.  I was not interested in getting things done the fastest.  And I am thankful that for every nurse, doctor, and tech that has taken care of me, especially over the last three decades, hopefully were not corner-cutters as well.  I count on them to have all the skills necessary to treat the needs that I have.

Today, we are dealing with our worst health crisis, at least in my life-time, and I want to say that I hope that I never see another one.  Over the last fifteen or so years, viruses and outbreaks have become very common.  And we have always been able to respond quickly and with hopefully the least amount of casualties.  But this time is different, there is no cure, there is no vaccine.  We are simply relying on people to willingly do the right thing.  And it is not much that is being asked.  Wash our hands, and social distance, six feet apart.

But, just as co-workers can interfere with a process of prevention or development, we in the public sector are no different.  We have the right people in place for the most part, the scientists doing the research, giving the recommendations.  And the majority of the people are doing their part listening to, and following the recommendations.  Then there are those who feel that their individual freedoms are being challenged, in spite of it being for their safety, for our safety, they will not be told what to do.  Instead, they also challenge the powers to be, to cut corners, and to go around protocols to find treatments and vaccines faster, so that they do not have to be inconvenienced, or lose their freedom.

It is only a select amount of people who feel this freedom is being violated.  And the scientists cannot allow their concentrations to be distracted or diverted from their cause, finding a cure and a vaccine.

We have tons of medicines available to us.  And it is only natural to find multiple uses for them.  In fact, Big Pharm has found these new uses as a way to hang on to a patent to maintain their profit margin.  By the same token, accidental discoveries have also allowed doctors to make “off label” recommendations to help patients be able to afford medicines that might just help their malady.  One example that has led to other uses, sleep drugs being discovered also to benefit for use as a diet drug.

Or one that I personally became aware of years ago, the allergy drug, Claritin.  Only a few years ago did I learn that this drug had the ability to treat certain bone pain associated with neupogen shots for those going through cancer.  These particular shots would accelerate white cell growth, which of course occur in the bones, causing the familiar “growing pains” some of us may have experienced in our youth.  The thing is, this pain does not respond to normal pain meds, nor does it seem to respond to other antihistamines.  A regimen now is often recommended, off-label, of Claritin for this bone pain when going through chemotherapy.

So, why not just have the FDA approve Claritin for that purpose.  Because, we have a process.  It has not been scientifically and officially gone through the processes to be approved.  The cynic in me also tells me that there is not likely to be any kind of official designation, because there will not be any real profit for an over-the-counter medicine.  But, doctors who are aware of this option, will definitely recommend it, and unofficially, I can tell you, out of every cancer patient that has ever mentioned this to me, including my late father, Claritin has done just that.

The frustrating thing for everyone then, during this pandemic, is that we thought there might just have been a drug that is currently used for another purpose, that might help treat Covid19.  Just like Claritin, there was success with some patients that this drug had not just shown promise, but gave hope.  But unlike Claritin, the discovery of this particular drug, used for Lupus and rheumatoid arthritis, and the deadliness of the virus, caused an unprecedented hoarding of that drug, taking away availability to the patients that need that proven treatment for their quality of life.

Like I said, there is not a lot of time with this virus to find a cure or vaccine.  It was only natural to want to push this discovery, but it still needed to be done.  To determine if this drug could actually treat and cure Covid19, it would need to be studied just like every other medication.  But that will take time.

Sadly, because that time has not been taken, scientists have now discovered that the drug, taken in higher dosages, can be fatal, caused by cardiac issues.  These are issues that come up in studies.  There is a reason that we cannot just throw a pile of shit at a wall and see what sticks and say, “THAT’S IT!”.  There are no corners that can be cut.  There is not fast way to get there.

All we can do at this time, while we wait, is follow the advice that we have been given, because for the most part, those of us that have done our part, the statistics are nowhere near what they could have been.  But imagine if everyone had followed the advice instead of feeling their freedoms being threatened.  We could have been done with it by now.

Dangerous Comments


***I want to state, the following is not a political rebuke against the President of The United States, but rather an explanation, given the current health crisis that our country is going through, the importance of letting scientists do their jobs, and not mislead or suggest unproven or ideas not even conceived, yet intended for as close to as immediate as possible usage.

On Thursday, April 23, 2020, the President made a clear statement to a representative of the health department, to investigate the possibility of looking into “digesting” or “injecting” disinfectants into humans as a possible treatment (just as he pushed for the use of prescriptions used for Malaria and Lupus), and also the use of ultraviolet radiation for use outside and inside the body.  This is not up for debate.  He made the statements, nothing was taken out of context, nothing was sarcastic.

I am not going to comment on the ludicrousness of the idea of treating humans with disinfectants as this issue was addressed when we were children, and as I taught my children when they were three years old… it kills.  Instead, I am going to concentrate on the use of the ultraviolet radiation concept.  While acknowledging there could be a potential possibility, the current crisis does not provide time for research, my personal story is why.

The pictures that are posted above, are taken from my now thirty-one year old medical file for my Hodgkin’s Lymphoma.  I am sharing these for one reason and one reason only.  So you can understand, just how dangerous, an unresearched treatment can be.

For decades, going back even before the 1960’s, radiation therapy was a commonly used treatment for Hodgkin’s Lymphoma.  It led to a high remission rate as far as cancers go.  There were short term side effects from skin burning to sore throats, and other issues.  But something was missing from the research.

As decades went by, so did the modes and methods of delivering the radiation change, or loosely put, improved, still producing similar successful results, but still with the extreme immediate side effects.  But again, information was still missing.

So, in the Winter of 1989, when I made the decision to treat my Hodkgin’s Lymphoma with radiation, a machine called a linear accelerator was going to be used to deliver the treatments, thirty over six weeks.  If you look at the first picture, you will see short term side effects listed, which were pretty much accurate.  But in the circled area, are what is called the “long term side effects”, or potential for.  Bone and muscle issues were a possibility, but so was something called “pericarditis”, an inflammation of the lining around the heart.  That was all that was listed.  Likely, that was all that was researched.

The next photo, in the circled area, shows the dose that I received, 4050 rads.  Next time you get the chance to ask anyone involved in x-rays or radiation, how bad 4050 rads are for a human being.  I actually watched a friend who worked at a nuclear power plant break down in tears when I answered his question about my radiation.  The other pictures are actual polaroids taken preparing me for my treatments.

Nearly eighteen years after my radiation treatment ended, my chemo ending a year later, I found myself in an operating room having emergency bypass surgery for a “widow maker” heart blockage.  The cause?  Radiation damage.  Go back again, and look at that first picture.  Do you see that anywhere?  Of course not.  Because long term side effects were not researched beyond even five years.  Had it not been for a flukey feeling, I would have died.  My cardiologist guaranteed it.

Following the recovery from the surgery, I was seen at a “survivorship clinic” at Memorial Sloan Kettering Cancer Center in Manhattan.  A doctor there had been studying late effects from treatments for Hodgkin’s Lymphoma for a long time, but not something that was mainstream.  After my first few appointments, the following damage was diagnosed and determined to be caused by the radiation therapy in addition to the bypass:

  • heart valve damage
  • other blood vessels needing repair or bypass
  • carotid artery damage (both affected)
  • muscle loss in the back of my neck and shoulder area, causing my head to drop forward
  • both my shoulders pull forward on their own from the muscle loss
  • upper torso pain as well as spine issues
  • Barrett’s Esophagus (a precursor to esophageal cancer), as well as other issues within my digestive system
  • a 76% lung capacity (the lower left lobe is considered “dead”)
  • restrictive lung disease
  • several unidentified spots on both lungs, being observed and monitored for development, possibly into lung cancer

Again, go back to that first picture.  Think medicine missed the call?  Research was not done back when I was treated.  I opted for radiation because I felt chemotherapy would have been more difficult to go through, not knowing what would affect me later in life, because medicine had not researched it.

Today, medicine knows.  Radiation therapy has been researched properly.  Follow up protocols have been established because besides developing late side effects, it has been discovered, us Hodgkin’s patients can live a long time, a long time for these effects to develop.  Scientists have learned that more can be done with less and concentrated beams of radiation, resulting in less damage.

But knowing what I know now, would that have changed my mind to what I decided back then?  I honestly cannot answer.  I was scared shitless of chemotherapy.  But my point is, I have to let medicine do their jobs.  They are the ones researching the cures.

Now again, last night, the President said something publicly unfortunately.  I am not picking on the President or making fun of him.  I am also not saying his suggestion did not warrant any kind of scientific study.  But by blurting out the concept of ultraviolet radiation, without any “who, what, why, when, how much”, too many people looking for a cure for Covid19, put an unnecessary and unproven pressure on scientists.

I am proof that there is value in “long term side effect” research.  And I am no expert in ultraviolet radiation or used in therapy.  All I know, like many, is that we get sunburned because of exposure to the sun.  Which means that UV energy needs to be harnessed, and controlled, then determined how to be used, and most importantly, the potential for side effects, short term, and long term.

Personally, I have gotten to handle UV radiation in my former employment to disinfect surfaces.  As the scientists report, it is very effective in killing bacteria on solid surfaces, especially in an area of bio-hazard contamination, or need for quarantine.  But the key is, it has to be controlled.  You can go blind from improperly handling UV rays.  And there is certain to be some sort of damage from pro-longed use.

Like I said, this was not something to just be tossed out as some sort of bragging point to present oneself as some sort of ideaman.  This was something that should have been talked about through his appointed directors to investigate.

To be completely honest, I do not know if it would work or not.  And really, if it was a flat out “no”, I do believe that the medical experts that were by his side should have shut the door on that though right away.  But before this  can go any further, it needs to be investigated, and there is not time to investigate long term (remember, my long term side effects did not show up until eighteen years later and continue to this day thirty years later).

Right now, the scientists need to focus on what they already know has the possibilities.  To re-direct their attention for something that has not even been a consideration at this point will drag this crisis out longer.

I only wish the President would allow his committee to do the talking.  They are the ones who actually know what needs to be done and how to get there.  Is not that why he appointed all of them.?

Post Navigation