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No News, Just Thoughts- June 3, 2009

August 26, 2009

I caught a few minutes of David Letterman interviewing Robin Williams last week while at the beach. I just wanted to hug Robin. He had a valve replaced at the Cleveland Clinic. He kept putting his hand over his chest after every sentence or two. He seemed to be fighting tears as he smiled non stop. He said over and over how he was grateful for breath. He showed a pic of his scar. David has the same scar so was able to relate well, but he seemed uncomfortable to me. Another reason I wanted to hug Robin was because he didn’t seem to have any desire or even ability to talk about anything other than his surgery. Maybe I imagined it, but David seemed reluctant to really revisit that whole experience. It is hard to laugh without crying and cry without laughing.

Our time at the beach was wonderful. I admit to going back to last Summer and comparing the two trips, remembering how much longer I could sit on the beach, how much easier it was to walk in the sand, how we went more and did so much more last year. But, still, it was healing. We slept a lot, sleeping later each morning. We both read a book and a half, spending about three hours each day on the beach, another two hours or so on our balcony. We went out to eat late each afternoon, had seafood everynight.

I hadn’t realized that even though I’m home most of the time, neither of us had really stopped and allowed the latest cardiac events to sink in. It felt like I could finally step away from it enough to look at it. This is what I now see.

After complaining of chest pain and various other cardiac symptoms since the bypass and being patted on the head, I flunked the stress/echo test done so I could begin rehab. This began the adventure of the stents. The cardiologist told us then that when the right brachial artery was healed, he would try to stent one of the two remaining blockages. The other, he said, was too small to stent without his making a smaller stent and modifying equipment.

When I saw him almost two weeks ago, first visit post stents, he said he didn’t want to do anything else any time soon. That it was okay to start rehab (with two blockages??), to take my meds and enjoy life.

What I believe is going on with him is 1- he doesn’t like how I mess up his averages (“only 5% of my cath patients have to have a bypass”) I seem to be the exception, tha tiny percent he casually mentions beforehand, 2- he was not happy when Lisa had that Fellow banned from my room and that meeting she had with him and 3- while he wanted to give us more positive info that day in the hospital and was relieved I hadn’t died, after thinking about it, he doesn’t like the odds of another procedure.

What I believe is going on with me is that I am not necessarily looking for someone to do anything.. I am okay with things just being as they are. At least, my lack of desire to have another procedure is met equally with a fair amount of acceptance of what is. But I do want to know that what I’m being told is the truth. That’s impossible to know with this doc as he’s told me different things, opposite things. Either he doesn’tknow or he changes his mind a lot, or he doesn’t remember what he says from one time to the next and I could just as well toss a coin to get the truth.

I also woke up on Wednesday at the beach and felt very strongly that I should not start rehab, that it would not be safe. I didn’t say anything to Lisa, then Thursday afternoon, she said, “I really don’t think you should start rehab until we get you seen at Cleveland.”

Not wanting the beach to end after coming home, this past Monday, Lisa, my daughter and two grandsons went to a nearby park which has a lake and beach/swimming area. We stayed about three hours. It was down hill from the car to the beach area and I did fine walking downhill. But going back to the car, walking uphill, I had to stop every 20 feet or so. Finally, about halfway back, I had to sit on the grass and wait while my daughter went back to the car for the wheelchair. The total distance was only about 50 yards. It certainly validated the decision not to go to rehab right now, though I sure would like to get stronger. I keep seeing that echo after I had not been able to spend two minutes on the treadmill. How my heart looked as it struggled to pump after that little bit of exercise because of those blockages.

Also, before pain and weakness from the PAD in my legs has stopped me long before my heart did. Not so now. Not uphill anyway.

I also signed to have a copy of my medical records sent to me. She said they’d be mailed Tuesday of last week. That was eight days ago. Not to mention, the office hasn’t called about the rehab either. Stellar.

I worked in medicine for years. I know the lack of people skills most docs have. I also know that they often feel that they can’t be in that place of hopelessness with us, or they’d drown there. There’s a saying in nursing, “When you quit crying, it’s time to quit.” I have a feeling most doctors quit crying in medical school.

Lisa has a doctor though, her cardiologist (not taking new patients- boo hoo) who treats her when her lupus causes pericarditis, monitors her coumadin. She was very close to death on many occasions a few years ago. This beautiful man cries every time he sees her. He’s not young, but he’s not stopped crying. He remembers all about her. He asks about family. He sits and asks lots of questions. He listens well. He never seems to rush. His staff is equally attentive. Amazing. (I’ve seen the other cardio in the group, but he doesn’t do any intervention work. The guy I’ve been seeing is who they refer to.)

On another note, I thought the “pumphead” minus the pump, was resolved, over. I thought my cognitive function was back to pre bypass state. Either pre bypass I was cognitively impaired and didn’t know it or I’m not over it yet. I realized yesterday that I often can’t remember conversations that happened only hours before, at least not the whole conversation. I remember enough to know I had the conversation, but can’t recall the point.

I played a game of Monopoly (a partial game actually as do games of monopoly ever really end?) yesterday and found I couldn’t remember who’s turn it was most of the time, who had what property, what property I had and such. It wasn’t that I wasn’t paying attention either.

Winning at Monopoly is on my Bucket List. Fifty two years and I’ve never won a game. I was seriously playing. I figure Monopoly is one of the things on that list I can actually still hope to accomplish. Others are now physically impossible and then there are quite a few that have lost their appeal in my new lifeview post near-death. Some things simply don’t matter anymore. Monopoly, on the other hand, seems to be a worthwhile effort as it kills two birds with one stone so to speak. I spend more time with family, quality time. The grandsons at least, are thrilled. I’m not so sure about Lisa and the girls. They humor me though.

That brings up still another topic. I think we are in the “honeymoon phase” of heart disease. I know that my family is bending over backwards to be and do for me. I know too that though they deny it, they do a lot of what they do out of fear this may be “the last time.”

It might be the last Mother’s Day, the last beach trip, the last Easter. I am pampered and spoiled beyond belief. I know this phase well. Here’s why,

I’ll tell you a little about my mother. I love my mother, but there’s a lot of stuff. For instance, she abhores “hypochondriacs.” When I was growing up, she told me this often. Every physical complaint was met with, “You must be constipated.” She would then offer me prunes.
Headache? Have a prune.
Stomachache? Have a prune.
Sore throat, cough, runny nose, rash? Have a prune. Bones sticking out and large amounts of blood were the only symptoms not deserving of the prune treatment.

Now the more interesting part of all this is that on two different occasions of my adult life, she faked life threatening illnesses as a means to manipulate her family. On one of these occasions when I was in my early twenties, she claimed to have leukemia. I spent the next six months as if it might be her last, giving her every gift I ever wanted her to have, sending her to plays and musicals and spending every spare minute with her. The “honeymoon phase” of life threatening illness.

It’s no wonder that I ignored my own symptoms for so long. I would have rather died than be told it was in my head. Almost did too.

No wonder either that getting my digestive tract functioning well again has been such a cause for celebration for me. Whether it was switching from Zocor to Crestor or stopping the voltarin, I don’t know. I’m just very, very grateful! No amount of prunes was helping! I’ve been so happy about my return to regularity that I’ve had to fight the urge to stop and tell total strangers in Walmart.

And, I recognize the “honeymoon phase” in my family, having been there myself. I don’t know how to stop them. They deny being afraid, yet wait on me hand and foot. I can’t casually mention wanting something and it not be brought to me within 24 hours.

Of course, there are parts of this phase that I too participate in. I admit to hugging a little tighter, saying “I love you” more often, telling them how proud I am of them more freely, cheering louder and laughing at all their jokes, just in case. There’s a file with letters to each one, just in case. I am paying closer attention. Listening more closely, appreciating all those little things. I wonder too is this is the last time more times than I want to admit.

Am I really paying attention though? Cognitively, am I coming up short as I try to up the attention factor, forgetting more than I remember? Have to let that go I guess, and just do as best I can.

I have suspected I’ve caught a wink or two or twenty between them, as if they have this inside understanding I’m not privy to. Ahhh, I guess they do, too. For as rough as it’s been on this side of this, I’d still rather be the patient than be worrying about them as I know they have worried about me.

I’m glad they have each other. Just like Robin Williams, I don’t seem to be able to carry on a “normal” conversation with anyone. I have to talk about heart disease, or drug side effects, or doctors or aches and pains, not to mention my success in the bathroom of late, at least a comment about my scar.

We went out to eat last night. I performed an experiment on myself. I tried to not talk about my heart for one hour. Couldn’t do it. Here’s an example,
“Would you like to try my country fried steak?”
Me- “Just one bite can’t clog an artery an it?”
“How bout one of these fried green tomatoes?”
(can you tell we are in the south?)
Me- “You’d think this grease would lubricate the arteries!”
Then as my daughter tries to hand me the salt shaker, I have to dramatically put up both hands as if defending myself from a monster. “No, No, No added salt!” I cry.

Not even one hour. No wonder the honeymoon continues. I remind them at least every eight minutes.
Maybe I can track down Robin Williams for a little chat and give the family a break.

On the other hand, better get off the computer and pay them some attention, just in case.

Seriously, all that said as humor, but sadly true. I’ve spent my life building relationships and growing love with these dear ones. Just when I finally think I’ve figured out how to love them well, after finding my beloved Lisa, after discovering I don’t have to fix anyone after all…I don’t get it. The unfairness astounds me. My faith isn’t just shaken. It’s more fragile than my heart right now.

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