Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “October, 2015”

Bedside Manners More Bedpan?


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It really should not be all that much to ask, right?  You are dealing with a serious illness or injury.  All you want and expect is some empathy, some understanding, some patience for the patient.  But instead, you get snarkiness, robotic intonations of phrases, clockwatching, and no Q&A.  And if you are lucky, you might even catch the doctor give you a glance just to see if you are still paying attention to what you are being told.

Being a patient and caregiver, I have been on both sides of this issue.  So I feel that I can be fairly objective about this.  But please do not confuse my objectivity with acceptance or letting anyone off the hook.  As a patient, we have our own responsibility to ourselves also, to make sure that our needs are being met.  And when we are facing a difficult medical crisis, those needs also include emotional.  Without our emotional needs being met, we lose trust in the one person who is responsible for possibly saving our life.  And this attitude can have a definite impact on our survival.

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When faced with my own cancer, Hodgkin’s Lymphoma, I turned to the very first person that I ever knew to survive cancer, my grandmother.  She had been diagnosed with breast cancer in her early 70’s.  She had a mastectomy, and took some preventative chemo, and survived more than a decade.  She had been treated at a small-town hospital.  But she had survived.  It was a no-brainer, that I would choose her oncologist to treat me.  Dr. M had saved my grandmother.  I felt my chances would be great in my favor.

Dr. M was an older doctor, probably very close to retirement.  From what I figured, he was very set in his ways.  And it was his way, and only his way.  We clashed several times, but Dr. M soon learned that I was in charge of my care, and decisions were going to be made by me.  I still had trust and faith in how I was going to get through this, but it was going to be on my terms.

Well, I guessed wrong.  As soon as my lymphoma was gone (a result of my decisions), new disease was discovered.  This time Dr. M was not going to mess around.  I could no longer avoid chemo, a stereotypical terror I feared, and with good reason.  But it was his lack of bedside manner, while I was facing my biggest fears, and his reluctance to answer  two full pages of questions that I had in regards to chemotherapy treatment.  He took one look at my hands, saw the lists of questions and then said, “I don’t have time to answer that.”  And he walked away from me.

I was firm.  I had questions that needed to be answered before the first drip of poison was going into my veins.  And so I fired my oncologist, the same doctor that cured my grandmother.

I went next to my therapist and told them what I had done.  I was kind of surprised at his reaction in that I received part empathy, and part lecture.  It was the lecture that I got first.  I was made to understand, that oncologists deal with death.  Many of their patients do not survive.  Oncologists know this possibility exists with each patient that they take on, and for my requirement of an emotional attachment from my doctors, I was told, it probably was not going to happen.

However, then, I was told by my therapist that he would help me find another oncologist.  Surprisingly, it came from the same oncology group.  Dr. V was a younger man, an Army vet, but had a bit more of a personality, which I felt was important.  At least if my questions did not get answered, at least I might feel that he cared about whether I made it or not.  But who can argue with my decision?  I am here 25 years later because Dr. V earned my trust, which resulted in me fighting with a more positive and certain attitude.

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There is no doubt the impact of bedside manners of a doctor, can have on a patient.  That is not to say that a doctor does not have a right to be a jerk, or scold, or lecture.  Every doctor I have ever had since Dr. M, has scolded me, lectured me, one even yelled at me.  But I also know, they cared for me.  If I did something foolish, like eat a particular food, or as many Hodgkin’s patients know, drink any alcohol, as a patient, we paid the price.  And an oncologist would have every reason to want to lecture us.  They are trying to save us, and we give off the appearance that we do not have the respect for what they are trying to do for us, save our lives.  I once told one of my doctors that I “deserved” the amount of daily pain I deal with as my price for surviving cancer.  And when I say I got yelled at, even at my then age of 45, I GOT YELLED AT!  But I knew where he was coming from.  And I also made sure I never gave him a reason to do that again.

Does that mean that we should stop living?  Having fun?  Doing dangerous things?  Absolutely not.  But we need to keep things in perspective with our doctors.  Yes, they are busy.  They may have a lot on their minds, perhaps a patient who did not survive, maybe even something personal.

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But if you have a doctor that you feel really has no bedside manner, or at not enough to meet your needs, you have a responsibility to yourself, to not accept that.  There are options available to you to deal with this from nurses, to therapists who will intercede on your behalf, or even your case worker.  But remember, if the “manner” is being brought on by your own behavior, then the responses are to be expected.

A Special Throwback Memory To Last Many Lifetimes


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This is De (pronounced Der) Chang.  If a picture is worth a thousand words, I could paint an art gallery about a man who took part in creating hundreds of “forever families,” families who have adopted, in his case, from his country of China.  I will not go into the whole process of international adoption.  I could write an entire book on that.  Rather, I would like to tell you about the permanent effect, that a stranger on me and so many others, from the other side of the globe.

I knew very little about De when we first arrived in China.  I knew that at one point, he had been a singer for Chinese opera, and that his wife was a daughter of an Army general.  I knew he had a daughter.  From the business of adoption, I knew that I was going to have to give 100% blind trust to a complete stranger, that not just one, but two adoption processes would be completed without complications or incidents.  What I got, was so much more.

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On both trips to adopt our daughters, De was our “facilitator”, or guide.  He had a translator as his English was okay, but needed help.  From the day we landed on mainland China, until we left the country with a new addition to our family, he would make sure that all of our paperwork, which needed to be completed in Chinese, which none of us parents spoke, he would also make sure that we were treated exceptionally, and kept safe.

Sure, De received pay for helping with this process, but it was not the money that drove De, it was his love for the children that were going to find homes, and parents who might just have questions about Chinese children.

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With my two trips to China, De handled two travel groups of families totaling 21 families.  That meant that he was responsible for handling stacks of paperwork that had to be completed, notarized, and filed, as well as making sure that all fees accompanying the process in China were taken care of.  But it was quite clear, if there were to be no problems, we had to trust De.  He had done this process hundreds, if not well over a thousand times.

But there was no feeling in the world, like when he informed us, both times actually, that we were going to meet our daughters earlier than expected.  Everything was going smoothly.  And were led into a room in civic affairs, where down the hallway, we could hear multiple cries of babies, we assumed to be headed towards our holding room.  For the sake of communication, we were simply given a number for our family, and as the child was brought into the room, the number of the family was announced.  And here is what it looked like, when De called out “Jiangxi #7”.

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I was unaware of this photo being taken, as I was holding a video camera and still camera of my own, totally unaware that this moment was being captured by someone else for me.  That is my oldest daughter right in the middle of the picture, wearing green.

From that moment on, it was a whirlwind of more paperwork, but now with the babies in our arms, De always made it a point, to be a part of the children’s final days in China also.

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De enjoyed playing with all of the children, and it was clear that many of the children had heard music, because every now and then, De would sing, and the children were immediately drawn to him.  But De gave us so much more than that.  With one of our trips, he taught us culture, showed us tradition and history, and on one trip, showed us humbleness.

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He took us to several temples and other public areas, but it was when he took us to a neighboring village, that we understood, the lives that were going to be changed forever, and given a future that might never have happened otherwise.  It was a farming village, most of the homes consisting of four brick walls, and concrete floors.  There was no working plumbing or electricity.  And while we told to “bring gifts” (toys and candy), we were not prepared for the frenzy of children that greeted us after we departed the bus.  It was so overwhelming because the children knew this was one opportunity that they could finally “have” something.  Sadly, there were many who “took” from smaller and weaker children.

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There are so many families that have personal stories of De and his wife Helen.  For me, during our first trip, in spite of telling my bank that I was going to be travelling to China, and needed my credit card to work, so my card would not have been treated as stolen, was cancelled by my bank anyway, for that very concern.  For three days, De fronted me cash, vouched for my hotel stay, and took care of my intercountry airfare, telling me “no worries” (it was pronounced in Chinese – may wan tee).  It made me crazy hearing it repeatedly as I tried to deal with a 13 hour time zone difference.  But as he professed, it would, and did work out.  Here was a total stranger taking care of yet another total stranger.  This trip could have been a real disaster had it not been for the way that he took care of us.

He had a talent for “knowing” what the children needed.  On our first trip, his room was directly below ours, and hearing Madison’s loud screams came upstairs to find out what was the problem.  She would not take her bottle, would not nap, and would definitely not stop crying.  He actually took the bottle with formula in it, stuck it in his mouth, gave a few sucks, and then said, “need more sugar.”  We did as he instructed, and lo and behold, she stopped crying.  How could he have known this, except for his experience and care.

And during our second trip, he remembered us.  As I believe he remembered every family that returned to adopt or visit.  But our youngest daughter was so sick from an ear infection, he arranged medical care for us, with prompt treatment that finally provided relief for Emmalie.

But as I said, in just our family experience alone, he joined 21 families together forever.

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This photo was the last night that I saw De and Helen.  Our travel group decided to throw a dinner for them, to show our appreciation for what they had done for all of us.

While I have always hoped that I would return to China with my daughters being older of course so that they could appreciate such a trip, a visit to De was certainly expected.

Unfortunately, last night, I was informed that he had passed away.  I am not sure what happened, if he was even sick.  The “why” does not matter.  What matters most, is the adoption community lost one of its greatest advocates, and we lost one of the most influencial people of our lives.

I have so many memories of this great man.  I have so many stories to tell my daughters of their trip to the United States Of America.  So many tears, so many laughs.

I am not sure what De’s beliefs were, but I do know, if he believed in Heaven, he is taking care of children up there.  I will miss you my friend.

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