Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 18, 2013”

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.

I Can Taste My Chemotherapy

Besides the anticipation of nausea from starting and continuing chemotherapy, I experienced another unpleasant side effect, and this was immediate.  I do not recall the drug that was injected that caused it, but it produced a horrible “metallic” taste.  I cannot even describe the flavor, but it desimated my taste buds.

My oncology nurse had explained to me, that indeed it was the drug causing that, and knowing that I would have seven more injections of that crap over the next 7 (eventually 8) months, I asked what alternatives there were to make that infusion more tolerable.  Unfortunately, there were no suggestions.  So, being the picky eater that I am, I can get really resourceful when it comes to making food tasty if I do not care for it. 

After I was done with the infusion, I grabbed a piece of candy from the receptionist’s desk.  It was a peppermint hard candy.  That was it!  If I could suck on one of these during the infusion, that might just overwhelm the metallic taste.  After getting the blessing from the oncology nurse that it would not interfere with the chemo drugs themselves, she said that I could eat the candy during the infusion.  The flavor of the candy was stronger than the drug.

I cannot say that this strategy works in all cases, but if you are a patient having this type of issue, by all means, ask your oncology nurse if you can have a piece of hard candy, something that will not aggravate your stomach either.  It might just help.

I Am A Horrible Caregiver

The truth is out.  I am a horrible caregiver at least by Wendy’s description.  Wendy could not believe her eyes with the first cut that Madison received as I sent Madison to her mother for care instead of my simply just washing it, putting some disinfectant on it, and then a bandaid.  It sounds simple, but it is not, for me.

I have surgery scars all over my body, the biggest being the scar over my chest from the heart surgery.  I have been through cancer and chemotherapy.  Hundreds of needles for bloodtests.  I have even had blood coming from somewhere no man ever wants to see blood.

But show me a papercut and I will hit the floor.

As a patient, I was compliant with whatever the nurses and doctors wanted me to do.  I was called inspirational because I truly wanted to recover, from the cancer, from the heart surgery, and countless other maladies that required a period of rehabilitation.  I am a very proud person.  I am not in the habit of asking for help or assistance.  If I completed tasks before the event on my own, I could to it on my own afterwards.  Nurses were especially supportive while the doctors did the recognizing and congratulating for the efforts.  No one can tell me I cannot do something when I am so focused.

Maybe I was inspired by Rocky in the second movie when Adrian finally wakes up from her coma.  Rocky tells her that he is done fighting, he wants to care for her, and draws him close and repeats, “win, win.”  Mickey yells out, “What are we waiting for?” 

When I went through my recoveries, I know people watched me.  If they knew me, they were inspired by me.  And if theydid not know me, they saw someone fight to get back, what once was.

I take that same approach when the shoe is on the other foot, and I am the caregiver.  With cuts and bruises, I am just pretty much shake it off, get it cleaned up and move on.  But when it is something of a serious level like a heart attack, cancer, or car accident, you have obviously been given a second chance.  And I know what that feels like.  I want you to have that too.  I am not short on empathy, but I have zero supply of pity face to face with the individual.  As far as I am concerned, there is only one time when it is acceptable to give up.  Otherwise you fight.  I will stand by your side and help you, but the sorrow goes away once you are given the order to get well.

My daughters call it being “mean”.  Instead of hugs, and “that’s okay” comfort quotes I am more like Jillian Michaels.  If the doctors have given you the all clear to rehab, then you have no reason not to.  I am telling you, that you have no right to give up.

My cancer diagnosis, heart surgery and my never ending late side effects from my cancer treatments, I have done nothing but look forward.  I want to function.  There is no reason for anyone to have to care for me, except offering me encouragement.

But I have been on the other side of the field more than double the times I was a patient.  A car accident, a crippling illness, surgery.  I will make sure that as a caregiver, that you follow the doctor’s orders.  I will not let you give up.  I will do your grocery shopping for the temporary time, your laundry, and cleaning.  We will go for walks.  I will not let you sit on the couch by yourself, in the dark.   I will be your advocate and help you ask those that you need answers from.  As far as dealing with blood… I do what I have to.

Maybe I am not such a bad caregiver after all.

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