Paul's Heart

Life As A Dad, And A Survivor

14 Jan 2015

My Mom


att_1419299461525141

I am going to do something I do not believe I have done yet, in the history of “Paul’s Heart.”  It is definitely long overdue.  This is my mother, Barbara, pictured along with my two daughters, HER granddaughters.

There is a lot of historical events between my mother and I over the years, some good… some not so good.  My mother had to work second shift to support my sister and I, which left us in the care of my grandmother during the week.  In my teen years, I occasionally had issues dealing with “step parenting” after she married to someone other than my biological father.  One quick side note, a comical one, she remarried another “Edelman”, but of absolutely no relation.  She obviously saved money on monogrammed items not having to change anything, but the most awkward event came during my first wedding, where at the reception, and the time came to introduce the groom’s family…

“Entering the room now is the groom’s family, mother of the groom Barbara Edelman, and she is escorted by her husband John Edelman.”

Of course everyone clapped.  And then this…

“Next is the father of the groom, Paul Edelman and he is accompanied by his wife Shirley.”  Wait for it… and we did.  The applause finally started about three seconds later when my bride’s extended family, and my non-family guests realized that I had stepparents.  Being a former disc jockey myself, and having done hundreds of wedding receptions, I never ran into this situation myself.  Looking back, I can still chuckle about it.

But during the second half of my life, I cannot say enough about the support that I have received and continue to receive from my mother.  It is hard enough for a parent to endure even one crisis involving their child.  She has gone from one crisis to another.  She has been there with me from my cancer diagnosis, my life-saving emergency heart bypass surgery, 2 near fatal cases of septic pneumonia, and now my second divorce.  My mother’s concern and love has never waivered.  And to be perfectly honest, also during these times she has also not been afraid to contradict my actions.  My mother believes in me, and it is not just because she is my mother.

My parents divorced when I was around 3 years of age.  And I want to state clearly, I have no idea why the divorce took place, nor do I want to know.  It is of no benefit to me, nor has it ever been.  During the process, all that mattered, was that the children were kept out of the middle of the proceedings and any aftermath.  Children were never, and should never be collateral damage.

My maternal grandmother, her sister, my uncles… I never heard anything bad about my father, nor the reason for the divorce.  My paternal grandfather, my dad’s siblings… I never heard anything bad about my mother., nor the reason for the divorce.  My sister and I were never restricted from seeing either one of our surviving grandparents or family members.

Now in my situation, it is a little more tricky, because I live so far away from my daughters.  But I do try to arrange visits with my mother and sister for my daughters.  My daughters love their cousins and want to continue seeing them.  When I do get to see my daughters, they may not always get the chance to visit with them, because my daughters must travel to visit me, and time would probably not allow a drive-by visit.

So I count on the old court adage, “do what is in the best interest of the children.”  My mother got to enjoy my daughters’ school choral concert (I wrote about the concert back in December, that I go to watch it live via Tango).  And not too long after that, my daughters go to spend the day with my mother, sister, and cousins.  Games were played, a movie watched, and enjoyed some yummy food.  They had a blast.

And that is what I want to give my mother credit for.  She knows of nearly every detail of the divorce, and continues to be impartial, while still offering me support.  There is no conversation with the girls about the divorce process.  And the only mention of me is to tell my daughters how much my mother knows that I love them.  With me living so far away, all she wants is to be able to see her granddaughters, and because my mother has not interfered with the divorce process, she has made visits successful, and about the girls.  Visits with their paternal grandmother are in the best interest of the girls.

Look, in the divorce world, it is hard enough getting the parents to work things out amicably, especially when one parent continues to drive a “dagger” through the heart of the process, a win at all costs.  But only recently are grandparents finally getting rights to see their grandchildren.  The laws are vague because of terminology, instead of using “visitation”, the courts want to use custody, which in many cases, it is not about the grandchild staying with the grandparent, but only for there to be allowed visits.  And while the U.S. Supreme Court upheld the parental rights over the grandparents (Troxel v. Granville 2000 – a 3-3 decision by the way), it was clearly a vague resolution, saying that it was never made clear through the Washington State Supreme Court that “harm” would come to the children by the grandparents being denied the right to see the children.  The decision would be left up to “fit” parents, what is in the best interest of the children.  Of course you can see how that works… with a couple divorcing or separating.

But in  Pennsylvania, the U.S. Supreme Court decision was challenged in 2006 in Hiller v. Fausey.  The case involved an 11 year-old boy whose mother died, and the father refused to let the maternal grandmother visit with the boy.  It was established that the boy had been close to his grandmother prior to the mother’s death, and thus, it was in the best interest, and decided by the court, to allow the grandmother to see her grandson.

While it was a victory, it should not come down to a court to decide what is best for a child.  But some feel it is best to go that route as if to prove something so pointless, that the actions clearly are not only not in the best interests of the child, but only self-serving for the objecting parent.

Bottom line, if forced, the courts will order what is best for the children’s interests.

Look, I loved my grandmother.

PART_1413411433365_Image1413411433361

I only wish that she would have had the chance to meet my daughters.  My girls would have loved her, and currently would have been taller than my grandmother.

But every child, when given the chance to be with their grandparents, grows a bond that has a bigger impact on a child than one can ever imagine.  And I saw this every time that my daughters visited with my mother and my sister and her family.  And it is my hope that the arrangements that we currently have, allow our daughters to have those visits.  As a courts agree, it is in the best interests of the children.

Posted in Uncategorized | Leave a comment
13 Jan 2015

Just Another Reason…


We cannot argue, we would all much be better off if we ate right, exercised right, slept right, and so on.  And we all at one time or another have made excuses at to why we do not.  We blame ourselves, or we blame other sources.  The television commercials that somehow allow us to smell the mouth-watering aromas of fast food, ignoring the blatant warnings of addiction and death prior to the first cigarette, not having enough time to get out and at least take a walk because we do not want miss tonight’s award show, are all just excuses.

I am the world’s biggest hypocrite when it comes to eating healthy, getting enough exercise, and definitely getting enough rest.  I also make lots of excuses.  And that is really what they are, simply excuses.  And I hide behind a very big excuse, which should actually be a reason all the more to do something to lead me to a healthier life.

Waaaay back before I was even diagnosed with cancer, I knew that I needed to take good care of my body.  Now, notice how I wrote that, “I needed to take care”.  I did not write “I should have taken care.”  If I recall, my weight was fairly healthy at around 140 pounds, and I was in fairly good shape, constantly active playing recreational sports.  I did not eat the best, a combination of economics and taste (I wrote a post last year about being finicky like Morris the Cat).  But I knew, my family on both sides had histories of obesity, diabetes, and cardiac disease.

But then I was diagnosed with Hodgkin’s Lymphoma.  One of the strangest side effects I had, was a weight gain of nearly 60 pounds, courtesy of the high doses of prednisone I took to counter some of the effects of the other chemotherapy drugs.  So, it was only natural, that I get right back on the “horse” and drop that weight.  I lost all of the weight through dedication to the gym, daily, and a very strict diet – okay, the best I could do with not liking vegetables.  The weight came off in less than half the time it took to gain.

Unfortunately, what I did not know, is that my thyroid had been reduced to basically nothing, and was barely functioning, which meant my metabolism was not working properly – this due to the radiation therapy I recieved.  You guessed it, the weight started creeping back up, and in not time, my weight had returned to the weight I promised myself I would never let happen again.  My doctor ordered me to take a synthetic drug to make my thyroid work, and ironically at the same time, told me not to expect any major weight loss (which really sounds weird since if the thyroid worked properly, which is why I was told my weight creeped up, my weight should get under control).

So over the next many years, I just went through the motions, exercising when I chose, and well, whatever… when it came to my diet.

In 2008, another bomb got dropped on me, when another more serious issue developed again because of my treatments earlier in my life.  I had to have emergency heart surgery, again due to the radiation damage.  So as I was recovering from this surgery, I was being asked to keep two things in mind, diet and exercise.  I will get to those in just a second.  My first concern was rehabilitation.  I just had my chest cracked open, which means that the surgeon went through chest muscles.  I had a laparotomy during my diagnostic stages for my Hodgkin’s, had my abdomen cut open, and received no rehab to learn to strengthen my abdomen muscles, which clearly led to many issues physically for me.

Rehab_Pt_standing

Let me tell you, I was shocked when I asked about receiving physical therapy to recover from my open heart surgery.  I knew I would have issues with the breast bone healing (due to the radiation issue), but I never expected to feel as completely fatigued as I did the first time I got to my feet.  And then of course there was the issue of dealing with my heart which was now getting the proper flow of blood which it had not been for so long.

I was told I would not need PT because I was only 42 years old.  I would be fine.  Forget that my insurance was willing to pay for it, the surgeon and cardiologist did not feel it was necessary.  Within a couple of months, I would have my care transferred to a hospital network that required me to have physical therapy, because it had been determined not only for the benefit of the heart surgery, but due to the neglect from the abdominal surgery, and the physical damage that I had received from all of my treatments, recovering from the heart surgery was amplifying many of my physical struggles.  But within no time at all, the effects of not having physical rehab following my heart surgery were obvious.  My shoulders began pulling forward, as if hunching over, because I was afraid to stretch out my tender, repaired pectoral muscles.  Issue with supporting my head, protecting against something called “drooping head syndrome” also began to accelerate from the combination of radiation damage, and the pull from my chest muscles.

I finally did get into physical therapy.  Actually, I had to repeat it three more times.  I will not get into the rehab points in this blog, they are a separate issue.  I wanted to state that I had finally gotten to a point where I was functioning again, though with restrictions ordered by the doctor, but by all means, there would be no excuses anymore for me not taking care of myself.  I needed to improve my diet, reduce my stress, and get some form of regular exercise.

healthy-meal

It has taken some time, but recent events over the last  year or so, I am finally eating smarter, not to be confused with healthier necessarily.  I am still a very picky eater.  But my portion control has been so improved from learning to cut portions in half.  It used to be that I would smother any vegetable in any condiment just to make sure I did not taste or feel the texture.  I have a ways to go with choices, but at least now I will eat vegetables.  I will not order them, yet, but if they are on my plate, I will eat them.  It is a start.

exercise-illustration

Exercise has always been tough.  Of course you get the warnings, consult your physician before… yada yada yada.  I have a lot of physical issues that have developed over the decades between my treatments, surgeries, and recoveries.  So I do have a lot of restrictions that I must adhere to, to make sure that I do not cause any more muscular damage, spinal injury, or even cause any cardiac event.  So, at 49 years of age, I will never look like Atlas.  But there is no reason, that I cannot do a simple task, walking 20 minutes every day.  And generally I do this.

I have enough strikes against me health wise – family history, my own medical diagnoses – without making anything worse.  It is in my best interest to keep my stress to low limits, give my body enough rest, exercise, not smoke, and eat properly.  To be honest, I am not sure if I would be as diligent as I am today, if it were not for the support I receive from a professional dietician keeping an eye on me, and the tremendous support I get from those closest to me.

I cannot do this alone, and knowing that, is what is making the difference this time.

 

Posted in Cancer, Education, Family and Friends, Food, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
12 Jan 2015
8 Comments

When The Cure Might Just Be Worse Than The Disease


I am going to apologize for the length of this post.  I have done all I can, several re-writes to make it more friendly to read.  But as the conversations continue on this subject, my post actually continues to grow, so that not just the facts, but all sides of opinions can be presented.

The story has received national attention.  Knowing that my blog receives a lot of attention, a follower asked if I would provide an open discussion, that perhaps more understanding might be provided, that perhaps given the following of my blog, the family involved might just see all the support, encouragement, and hope that exists in treating one of the few curable forms of cancer.

Unlike other posts I have written here, I am going to change the format to make it a little more formal, as if written as a term paper.

Before I do that, I want to make a few things clear.  First, I will state facts as they are known and their resources.  I will make obvious those which are opinions.  Commentaries quoted in this post are confirmed as legitimate.  Comments and replies will be allowed as long as they are constructive and not inflammatory.

The Headline

The following is just one link to a news website, there are so many more that originally reported the story about a 17 year-old girl from Connecticut, referred to only as “Cassandra C.”, diagnosed with Hodgkin’s Lymphoma, a very treatable form of cancer, but refused the treatment, which was supported by her mother, due to the potentially toxic side effects.  The state interceded and has forced the teen to undergo the treatments, having been removed from her mother, and treated against both their wills.  Here is the link as one news affiliate reported the story:

http://www.cbsnews.com/news/connecticut-teen-with-cancer-battles-state-to-stop-chemo/

This is a sad story with major implications in all directions.  Legally, should the state be interfering with the rights of someone objecting to treatments?  How informed were either the mother or the daughter as to all the details needed to make an informed decision?  Does the 17 year-old girl even have rights?  But aside from all the controversies of this story, there is one huge topic not being discussed, either intentionally or just as matter of fact, and I will present that topic towards the end in detail, but how were the concerns of the family addressed, and were their concerns answered?

Hodgkin’s Lymphoma Facts

I have stated repeatedly on this blog, I am a Hodgkin’s survivor who will hit my 25th anniversary in remission on March 3, 2015.  I stand behind the facts that I am presenting from a personal perspective and as far as factual.  From the time that I was diagnosed back in 1988, I was told the cure rate of Hodgkin’s Lymphoma was 85% which made it one of the most curable.  My oncologist actually made me sick commenting “if you are going to get cancer, Hodkgin’s Disease is the cancer to get.”  (I wrote about that comment earlier in “Paul’s Heart” as to how much I took offense to that statement).  In fact, even in the decades before me, Hodgkin’s has been treatable with success, especially when caught early.  And in most all cases, untreated Hodgkin’s would lead to certain death.

The diagnostics and  treatments for Hodgkin’s Lymphoma have improved in success over the century since Hodgkin’s was discovered.  The safety of the treatments has also improved, but has a long way to go in terms of short term and long term side effects.

But what the reports do not state accurately, are the risks from the treatments.  Personally, I am offended to simply state the side effects as “including nausea, hair loss, vomiting, fatigue and diarrhea.”  This is a horrible stereotype that has existed for decades, which has always enflamed the fears of dealing with cancer.  But the truth is, if it were accurately reported, there are far more serious potential side effects, and they depend on the type of treatment done.  To understate those risks, no matter how small, provides a huge disservice to the patient and her family.

Radiation therapy has always been the go-to for treating Hodgkin’s.  Gone are the days of exposure to cobalt radiation, and being exposed to limits of other radiation that exceed lifetimes of exposure limits.  Chemotherapy drugs used in warfare then used to treat Hodgkin’s as well as other toxic drugs, now considered obsolete.  There are now new standards of radiation and chemotherapies being used, that are providing similar success, but still carry more risks than the stereotype side effects listed above and they include:  cardiac, pulmonary, gastrointestinal, endocrine, spinal, muscular, neurological, renal, urinary, reproductive, and of course, emotional.  There of course is the risk of secondary cancers such as breast, thyroid, colon, and even recurrent or new Hodgkin’s.  Now I have just listed the systems involved, but the effects for each system are numerous.  And for the sake of this post, I will say that this is only in the case of Hodgkin’s Lymphoma, not necessarily other cancers, unless those cancers use similar drugs for their treatments.  As you can see, there is far more to consider than just nausea and hair loss.  While the risks may be lower, they still exist.

Facts Of The Case As Reported

The subtitle above is written that way on purpose.  For the purposes of HIPPA, we, as readers do not have the rights to the actual information of the case, including the actual treatment regimen.  Therefore, we can only rely on the following facts as being legitimate:

  • Cassandra C. at 17 years-old is a minor
  • Hodgkin’s Lymphoma very treatable, untreated death likely
  • Cassandra refused treatment due to toxicity concerns, mother supports her daughter’s wishes
  • Department of Children and Families removed Cassandra from her mother, and have allowed the treatment to be administered by orders of the state of Connecticut
  • DCF is now in charge of Cassandra’s care
  • Neither the Supreme Courts of Connecticut or the United States has ever ruled on this issue

The Argument

This is what has me bothered most about the whole thing, because all that is being discussed, though legitimate, is the right to do with your own body.  “It’s a question of fundamental constitutional rights — the right to have a say over what happens to your body-and the right to say to the government ‘you can’t control what happens to my body,'” Cassandra’s mother’s attorney, Michael S. Taylor.

Not being discussed are the reasons that this family is in this position in the first place.  Questions about the safety of the treatments, or the surveillance to deal with these issues are not even being discussed.  So yes, if it is only coming down to the “right to do with your own body,” then the argument should be done.  With a full and complete discussion of the risks and monitoring to address the concerns of the family, only then can the family make the informed decision that they claim to have made and support.  The fact is, we have no idea the details of the conversation between the doctor and his patient about the risks and side effects other than what has been released by Cassandra’s mother.

Instead of trying to get to the bottom of what is best for the young girl, which yes, is to survive a curable cancer, a system, our government, and everyone else reading this story only want done what we believe, in spite of clearly violating a valuable right, not what can be done safer or better.

Case Update – Facts

http://www.nbcnews.com/health/cancer/connecticut-teen-curable-cancer-must-continue-chemo-court-n282421

The Connecticut Supreme court ruled last Thursday, that Cassandra C. is not mentally competent to make her own decision and will continue to receive her chemotherapy that both she and her mother battled to halt.

Lengths to avoid treatment included Cassandra C. running away from home.  But the state used against Cassandra C. the fact that several oncology appointments and exams were missed to claim that Cassandra C. was too “immature” to be responsible for her decision, as her mother is being accused of making the decision, rather than supporting it.

To be honest, it should not be considered unusual, as part of the Kubler-Ross stages, to go through “denial” and want to avoid things that you must face head on.  But it clearly would have been better for the mother to have attended those appointments and exams, and instead argue for alternative treatments that the family may have felt comfortable with.  Or perhaps to discuss the protocol to follow up for potentially dangerous side effects during the treatments.  We will never know.  Therefore the Connecticut Supreme Court ruled against the rights for anyone to want to protect their own body.  A different article completely, this will have profound implications for everyone.  But still, no one is talking about the actual care of the girl, and that does not mean forcing her against her will to go through a treatment that is toxic.  Chemotherapy is toxic.

The mother’s attorney, Taylor argued that both Connecticut courts and the U.S. Supreme Court have previously ruled that a person’s right to “common-law bodily integrity is a fundamental right,” and that right “exists in the minor the same as it could in an adult.”  Clearly, this is no longer the case.  As the attorney then stated, Cassandra C. has the maturity to drive a car and donate blood, but not decide what is best for herself.

To date, the treatments are having success as she is mid-way through her treatments.  And there are pros and cons should that treatment stop.  To ease up on the attack of the disease could result in remaining cells to build immunity against returning to the treatment process, or perhaps even cause the cancer to become even more aggressive.  The treatment plan at that point would need to become even more aggressive and more risky, involving cell transplants which carry their own risks, but also higher doses of chemotherapy prior to the transplant.

Today, as reported on the web site firstcoastnews.com: http://www.firstcoastnews.com/story/life/people/2015/01/12/teenager-explains-why-she-dont-want-chemotherapy/21633579/

“The 17-year-old says she is worried about what she considers risks, including heart defects, organ damage, and digestive problems.  These are legitimate concerns for anyone going through any cancer treatments, and I will personally attest in the treatment of Hodgkin’s Lymphoma.

“I entirely understand that death will be the outcome without the chemo,” Cassandra wrote to ABC News affiliate WTNH-TV from Connecticut Children’s Medical Center, where she has been living and getting treatment. “The doctors have made that clear.”

Ultimately, do we, you and I, the government, have the right to tell this family what to do?  Seriously, how should our opinions matter in this?  There is a hope, among many readers of Facebook, blog, and other media resources, that somehow, we might convince the family that they have support, now nationwide, to get cured of a deadly disease, to be one of the 85%.  But this is only of value if solutions are offered for the problem.  As of these news reports, there are no solutions.  Right now, the  only winner is the Connecticut Supreme Court.

Commentary

I am a 24 year survivor of the same disease Cassandra C..  And now that she has gone through her treatments, hopefully she will be closely monitored for the potential late side effects, that could develop.  I have well over a dozen serious diagnosis of late side effect, with at least six of them potentially life threatening, all caused from my “cure.”  My initial response to this story shocked many of my readers as I answered the ultimate “what if” question, “would I go through it again?” and my answer at the time was a definite “no.”  I have had a few days to think about my knee-jerk answer, and while not uncommon for someone in my spot to make that comment, it was unusual for someone like me.  All that was disclosed to me as far as potential side effects would be pericarditis (an inflammation of the heart) or a secondary cancer.  At that time, it definitely was worth the risk for a 23 year-old.  But had I been told, that I could face a fatal heart attack, stroke, restrictive lung disease, and many more… I would have said no.  This came as a shock to those who know how much I love my daughters, who clearly would not have come into my life had I chosen not to go through treatments.  Admittedly, I am going through a different kind of traumatic and stressful period right now which definitely had an impact on my thought process.   I still believe it is not an easy decision to be faced with.  But I also believe STRONGLY that MORE NEEDS TO BE DONE not just in a better and safer treatment regimen, but a better protocol to follow up for the development of the side effects.  And yes, if my daughters were to face any situation like this, I would have fought treatments until I could make sure that EVERY one of our concerns was addressed and dealt with, and only then with close surveillance would I allow it.  But it is my child’s life, and we have the right to protect our body to the best ability, not just what is cost effective.

Bloodwork is done throughout the treatment plan to make sure that bodies are going to be able to tolerate the toxicity of the treatment before it is administered.  But other than a base-line study, no other testing is done on potentially affected body organs and systems until most likely months following the completion of the treatment.  The fact is that one of the drugs, used successfully for the treatment of Hodgkin’s for decades, including me, can result in congestive heart failure.  And medicine knows that it can be detected as early as the first treatment and how to do it, yet it is not.  For the small percentage of patients who face CHF from the drug, the patient will endure permanent damage as they get to the end of the treatment plan.  But there is no follow up for this.  Why?  Because medicine feels it is not cost effective for the small amount of people that could face this.  Admittedly, my cardiac issue is not solely related to that very drug.  But there still was no monitoring me until 2008, nearly 20 years after I was diagnosed.  So you can see where my stance is… better follow up protocol during treatment, along with better and safer treatments, and I believe an incident like Cassandra C.’s situation would possibly never happen again.  But do not take my word for it.

Here is commentary from two guests on this post.  The first is from Wendy, a fellow long term survivor with a different outlook on things, that I can clearly understand and actually support.  The second will be from Josephine, the mother of Michael who I have written about on a couple of occasions, including earlier last week.

Wendy (this is a quoted response from a post on a Hodgkin’s related FB page)

“Each time I sat down in the “chemo” chair and had my IV started I prayed out loud to God. I thanked the many patients who went before me and were the “human guinea pigs” who made successful treatment of Hodgkins Disease possible in 1987 when I was treated. I thanked God for making humans smart enough to become scientists and thinkers who could solve some of their own problems like diseases. The progress made up until that time did not benefit those who were a part of the learning curve and died while discoveries & advancements were being made. That progress benefited “the next generation or group” to be treated. Zofran was not available as an anti-emetic when I was treated so I vomited my guts out! In 1991 the FDA approved Zofran and patients had something to help with the nausea and vomiting. I just missed it by 3 years. That is how quickly things can change. Therefore I think this young lady should consider all of us who endured the poisoning from chemo, the burning from radiation, and now the latent effects and repercussions from those treatments. Yes, some of us are still alive, and many are dead. This young lady should look at the history of treatment, how far it has come and also should consider patients still die from Hodgkins Disease! Perhaps her generation cannot endure anything that isn’t painless and does not involve immediate gratification! This is a long haul journey when you embark on beating back any cancer. It is not always “one and done.” WE are acutely aware of what would have happened if we did not have the fortitude to stick it out. I, for one, would not have had the last 27 years of life! That means I wouldn’t have married my awesome husband and given birth to two sons who are now 18 and 20 years old! My 3 years of diagnosis, treatment, follow up were worth it! The young lady who is refusing treatment may never know what she is missing in exchange for making it through treatment. She may never know her future husband, children. Her Mom, who is encouraging her daughter to refuse treatment, may never have the joy of grandchildren who might have been here if only her daughter could have endured something unpleasant. Yes, this is long, my last thought is that is is an insult to Hodgkin’s patients, dead and alive, who paved the way for her to have an 80% chance to succeed and live. I usually don’t say too much on our site. Now you won’t hear from me for a month or two! Thanks for reading!”

Josephine

Her 24 year-old son died as a direct result of the drug that has cured so many of us Hodgkin’s patients.  He died from complications of CHF that no one, including his oncologist, his mother, nurses, even Michael could ever have known would happen.  But I took the opportunity of this topic to ask her a question that should have been responded with an obvious answer.

“Josephine, did you have any idea that serious heart complications could have developed from the one drug?”

“No.  I have the paperwork, and there is barely any mention of the seriousness of heart complications.”

“So then, knowing what you know now, would you have allowed your Michael to have undergone the treatment?”

Me personally knowing what her son went through from the time he went into CHF until the day he died, and the quality of life issue faced by Michael and his family, her initial answer surprised me.

“Yes.”

And then she followed up… “though I would have made sure that they followed Michael more closely had I known.”

Final Comments

The facts speak for themselves.  Hodgkin’s, though a rare form of cancer, is still one of the most treatable, when it is caught early.  It is going to be one of the most difficult decisions to make, if a patient is completely informed.  But the doctors have to be completely honest about the risks instead of being worried about delays from having too much to think about and taking too long to think about.  Doctors need to make sure that every one of a patient’s concerns are answered, and if those concerns cannot be addressed, then it needs to be left up to the family, and not a court, legal or of opinion.  And finally, WE NEED A PROTOCOL TO FOLLOW UP ON BODY ORGANS AND SYSTEMS THAT HAVE EVEN THE SMALLEST OF POTENTIAL TO DEVELOPE A SIDE EFFECT FROM A DRUG WITH A HISTORY OF CAUSING SUCH DAMAGE.  It is unacceptable to say “it is not cost effective” to monitor for potentially lethal side effects even if they only occur 1% of the time.  Only when a patient and their family is convinced that medicine will do all it can to protect the patient, will a situation like Cassandra C.’s will have a chance of being prevented from happening again.

For me, while I am glad that Cassandra C. is being treated, I am sorry that her rights to refuse treatment were violated.  I do believe in the ability to cure Hodgkin’s… I am proof that it can be done.  But I am also proof, just as Michael and Wendy, more needs to be done with surveillance to prevent tragedies and serious side effects.  Cancer patients are now being followed up more closely once done with their treatments, but more needs to be done, both during and after treatment.  Costs to deny the proper protocols and follow ups, will never equal quality of life.

And now it is your turn to comment.  I will publish your comments as long as they are constructive and supportive as this blog is intended to do.  Simply reply to this post for publication.  Please feel free to share this post.

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

Post Navigation

← Older Entries
Newer Entries →