Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “oncologist”

A Carnival Of Cancers

I would like to dedicate this story to two young people that I talk to about their cancers.  One has just celebrated one year of remission, the other, is approximately a month away from completing his journey.  Both have faced their Hodgkin’s.  One has beaten it, the other is almost there.  I am happy for both of you.  Your experiences during your fight with Hodgkin’s that you have shared with me, are truly an inspiration.  The support that you had from your families, should serve as the example of the support that all patients need to get through their fight with cancer. 

Whether visiting the boardwalks of the shorelines, or local carnivals, it is not uncommon to hear some barker call out to passer-byes to step right up, and win a prize.  While the games are fairly easy to win, the prizes are awarded by some ladder scale from small to largest, and when played long enough to get the larger prizes, come with quite a price.

But imagine if the dialogue went something like this:

“Step right up, come on over, give it a shot, it’s real easy.  Everybody gets it.  Is it going to be small or large?  How lucky you feeling?  And we have a winner!  It’s cancer, but not just any cancer.  Hodgkin’s Lymphoma folks.  He’s got Hodgkin’s Lymphoma!  Who’s next to test their luck?”

Of course this is a ridiculous premise, but I challenge you to find one person, who did not hear these words from an oncologist, “You are really lucky.  If you are going to get a cancer, Hodgkin’s Lymphoma is the cancer to have.”  I will let the doctor off the hook in a second, but for now, imagine, you have just been told you are lucky and that you have cancer.  What would your reaction be?  You have a deadly disease, remission or cure is not certain, but for you, the news is good.

For myself, I was in an office of an oncologist / hematologist.  I had no idea what that even meant.  All of the prior doctors that I had seen had been looking for some sort of cold, or perhaps an injury when one of them decided to send me to this place.  I was not even placed in an exam room, but rather the office of the doctor.  He walked in to the office, around his desk, sat in his chair, and then rattled off an obviously often rehearsed speech.  I have no idea how, but with just the first two words from his mouth, “Hodgkin’s Lymphoma…”, it triggered an automatic response of something I should never have known what it meant.  By the time he finished that first sentence, ending in “rare form of cancer.”, I had already guessed that is what he was already talking about.  Then I heard the word from him, “cancer.”  I knew I was in the wrong place, the wrong patient, the wrong diagnosis.  But he kept on talking.

“Hodgkin’s is rare, but it is also highly curable, at 85%, if you are going to get a cancer, Hodgkin’s is the cancer you want to get.”  I “want to get?!?!”  Seriously?  I wanted to get cancer, so I pressed my luck and came up with Hodgkin’s?  People die from cancer, and he is telling me that I am lucky?  Pardon me, but are fucking kidding me?!?!  I did not want cancer!  Let me be clear, I did not want it.  I did not wake up that morning, and make a choice between buying a lottery ticket or getting Hodgkin’s.  Clearly, winning the lottery, that would have required luck.  Cancer kills.  How is that lucky.

Now as promised, I have to cut the doctor some slack, but hopefully those who are reading this, and have been in this situation, not just with cancer, but any serious crisis, print this, and give this to the doctor to read.  Like I said, I am not going to hammer the doctor.  Let’s face it, next to a cardiologist, the oncologist has to deal with one of the most grim disciplines of medicine.  And if they have been practicing long enough, the tended to plenty of patients, whose prognosis were definitely more grim than today.  So there may be an oncologist who may not have the best or happiest bedside manner.  But hopefully we can get it across, by passing this on, there is no such thing as luck with developing a certain cancer, or how advanced a cancer is compared to another.

I would rather have had the doctor say, “I am sorry to tell you, that you have cancer.  Here are the statistics, and here are the modes of treatments used to treat it.  I am going to do everything I can to put your cancer into remission.”  It is that simple.

I was not lucky.  I was diagnosed with cancer.  I was treated with chemicals and radiation that were toxic and difficult to go through.  I was left with some permanent after effects from those treatments, some serious, some not so much.  The last thing I consider myself today is lucky.  But what did happen?  I tolerated the treatments.  My body endured.  My physiology was able to handle the all-out assault of the chemotherapy and radiation therapy.  This was not luck either.  My body did what it had to.  The treatments did what they had to.

Please, do not get me wrong.  It is no minor accomplishment that I am here twenty three years later.  I often wonder how the other three kids who were treated with me turned out.  Progress in the diagnostic techniques and treatments of not just Hodgkin’s Lymphoma, but many cancers has advanced so far in the last two decades, and from the times before I was treated.  Survival rates for Hodgkin’s has increased from 85% to 95%.  And there are many cancers that have achieved 100% remission or cure.  In spite of the positive direction that cancer research has taken in two decades, I know better than to tell the many newly diagnosed patients or those currently in treatment that they are “lucky that they did not have to go through what I did, or those before me.”  Patients today are still being diagnosed with a deadly disease, high cure rate or not.  We are not lucky.  We simply hope that we have made the right decisions in the doctor, the treatments, and have the right support team with us.  this is not luck.  We simply count on everything to go as the books say to do.

Why I Changed Oncologists (Twice)

There are many factors that went into choosing my oncologist.  But no factor to me as important as trust.  I selected the oncologist that treated my grandmother for her breast cancer a few years earlier.  She had tolerated everything so well, had great spirit, as odd as it is to describe a cancer journey as a “positive experience,” my grandmother presented her case in that manner.  But I had a confidence in Dr. M before I had even met him, because here I was, in the same office that my grandmother was in, several years before, and was still alive at the time I was there.

And during the beginning of the original process, everything worked like it was supposed to.  Dr. M listened to me, assured me everything was going to be alright, and explained everything that was being done and why.  He even visited me in the hospital following one of the testing procedures I had done.  But when it was time to make the decision on the course of treatment, radiation or chemotherapy, he gave his recommendation, which I had other ideas.  I had turned away from chemotherapy followed by radiation.  Instead, I would just undergo radiation therapy.  It would allow me the quickest opportunity for me to recover and subject me to fewer visible side effects.

Unfortunately, as Dr. M had feared, radiation alone had not done the job completely as I had hoped.  Instead, new disease had appeared.  This time, Dr. M was not giving me any option.  I was told chemotherapy was coming, possibly more radiation, but definitely chemo, and starting within a couple of weeks.

My personality dictates that if I have a question, I want an answer to it.  I am willing to walk away from whatever the circumstances or become quite combative if I require answers that strongly.  I had my consult to start chemotherapy with Dr. M.  As I am known to do, even twenty years ago, I use notes to remember details of comments or questions.  Given how intense the chemotherapy cocktail was going to be, I had a lot of questions, about a page and a half of legal paper.  Dr. M walked in and asked what I was holding.  I showed him and he dropped the papers on the exam table, “I don’t have time to answer all of these questions.  This is ridiculous.  What do you think this is?  You either want to get better or you don’t?”  With that, I walked right out.

The thing about serious illnesses, is that most of us do not realize that we do not have to take these monumental efforts on our own.  There are people out in the world to act as an advocate for you, if you cannot voice your opininions and questions.  I had already been seeing a therapist to deal with my cancer horror when I went straight to her office from Dr. M.  Ilona asked me what I wanted to do and I told her, “I want to live.”  But I had questions and Dr. M. refused to answer them.  My confidence percentage level in him dropped to single digits.  I wanted a new doctor but did not want to start all over with new testing in the event another doctor would want his own results.

Ilona made the suggestion that perhaps I switch to Dr. V or Dr. P who were in the same practice, but perhaps had the more interactive personality that I needed.  I would stay in the same practice, meaning I most likely would not have to undergo new tests.  I liked the idea but was uncomfortable with implementing this change.  Which Ilona offered to do on my behalf.  Also, Ilona offered to speak to my oncology nurse to see if she would be able to answer all of the questions that I had.  After all, Brenda would be the one adminstering the chemo.  And Brenda’s motherly care was already engrained in me.  She took care of me like I was her son.  And I trusted her.  So, I spoke with Brenda about my questions, and the following week I began chemo with Dr. V.

About a year after my treatments had ended though, another issue had come up, one that I had discovered by mistake, and one that I was never intended to find out.  With no real purpose other than follow-up exams, the only real money with me, was by doing bloodwork.  I know this sounds like a very ungrateful statement.  But I will justify that.  By my third follow-up exam, a wierd process was happening.  I was having to go back into the doctor’s office to have my blood re-drawn for testing.  Okay, so I do not like needles, and was not crazy about having to take off from work again, but hey, the tests were important.

But then I began to get rejection notices in the mail from my insurance company.  This was odd, because my coverage literally covered me for everything.  Further review of the statement showed “duplicate billing”.  It was obviously some clerical issue so I was not worried about anything.  But then I got an actual bill from the doctor’s office.  My benefit plan took care of all expenses other than copays.  So I called the office to find out why I had gotten a bill, and I was told “because you had blood drawn.”  I said, “I know, but they couldn’t run the tests on the blood because it hemalized.”  The clerk, who also happened to be the doctor’s wife said, “you have to pay.  You had the blood drawn.  The insurance company isn’t paying for it, so you have to.”  The key was finding out that blood usually hemalizes when it is drawn, by the tech.  Simply, the red blood cells are outer walls are ruined.  So they knew the tests could not be run, yet submitted a bill to my insurance company anyway.

That is when I did a little homework, and discovered that blood hemalizes when it is drawn, not during the testing.  So, the blood never made it to the lab.  Why the hell are tests being billed that were never done?  This was the third time that this has happened to me.  I called a family relative who was a nurse at the time, and confirmed everything with her.  Then I called the doctor’s office back.  I told them, “I want all of my records transferred to…” and then gave them the name and address of the new oncologist I would follow up with from then on, and then told the clerk “why”.  Before I could go any further, the clerk then said to me, “I will personally take care of that, and you can consider your balance paid in full.”

A dishonest business practice left me with a pit in my stomach.  I was supposed to be grateful to this practice for saving my life.  I did not pursue any legal action toward them as Ihoped that the fact that would worry if I would go public would scare them into straightening out.  I have never been in contact with them since, but I do still think about the situation, and how many other patients might they have done this to.

If You’re Going To Get A Cancer…

The following story suggestion was made by a fellow Paul’s Heart blog reader and fellow Hodgkin’s Disease Survivor.   Thank you Cathy. 

Imagine that you have been just told that you have cancer.  The very first thought that came to my mind was, “I’m going to die.”  That is all I knew about cancer.  I would be subjected to horrible chemotherapy that would make me vomit, was painful, go bald, and would eventually cause me to lose so much weight that it would look like I was starving.  No one survived.

Not even knowing what an oncologist-hematologist was, I was sitting in a waiting room of one.  My name had been called, and I was escorted back to an office, not an exam room.  This had never happened before.  In walked Dr. G, who resembled Jeff Goldblum in The Fly.  He walked around his desk and sat down.  There was not even an introduction.  He just went right into this speech:

“Hodgkin’s Disease is a cancer of the lymph system.  It is very treatable either with radiation or chemotherapy.  It has a cure rate of 85%.  It is one of the more curable forms of cancer.  In fact, if you were going to get cancer, this would be the cancer you would want to get.” 

I do not know which was harder to comprehend, the fact that he was telling me that I had cancer, or that if I wanted to get cancer, I got the good one.  I was twenty-two, healthy, somewhat physically fit, engaged, and happy.  Cancer was for other people who were not… happy-ish with other things going for them.  I had never even heard of Hodgkin’s Disease.  But now I had to embrace it with the confidence of getting over a common cold.

I was still going to have to deal with the chemotherapy and/or radiation therapy.  I was going to puke.  I was going to go bald.  I was going to die.  I did not want to die.

Three months later, following months of testing and biopsies, I began my treatments.  It did not take long to confirm, that I did not want any cancer.  Treatments were not easy though I put on the brave face for each one.  It took four weeks for my hair to fall out, I puked in less than an hour from treatment, and I gained sixty pounds.  But in the end, I did beat it.  I was hopefully not only going to be one of the 85% to be cured of Hodgkin’s Disease, but perhaps help move the stat up to 86%.

I get it.  From a survivorship standpoint, Hodgkin’s Disease is a very curable form of cancer when caught early enough.  On March 10, I will recognize my 23rd year having beaten HD.  I very rarely celebrate it just out of respect for those who still battle the disease, or worse, have lost their lives.  It does not feel right for me to celebrate this.  But as I come across so many other people who have beaten cancer, and look for something, hope, inspiration, perhaps celebrating at least the milestones,   Because there are millions today now looking to find people who have beaten cancer.  If you know someone who beat cancer but wants to know someone who has lived longer, send them to “Paul’s Heart”.

I feel that I want to finally celebrate my longevity now.  With so many offering such nice compliments, support, and comments and suggestions, the cancer that I beat has given me an oppotunity to reach so many more.  I am hoping in time, we will see even more progress made in other cancers such a lung, colon, breast, and leukemia just to name a few.

I would make a safe bet, that of my readers at Paul’s Heart and beyond, there would probably be a minimum 15 people, usually younger in age, who have Hodkgin’s and were told it was “the cancer to have.”  But I think as we meet other survivors with similar cancers or different, the message is getting out.  We are winning the battle against cancer.  We are still far away, but we are getting there.  Soon, another cancer may take the place as the one to have.

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