5/4/13 BATCC and Back Again

Debbie and I made our trip to BATCC for my annual checkup last weekend. We stopped in Baton Rouge and spent the night with our life-long friends, George and Myra, enjoyed a wonderful evening of conversation, good food, music, met some new musician friends, and had a special treat when George and Myra’s son, Casey, and his wife, Stephanie, made the trip from New Orleans to see us. Casey is a professional musician and it was the first weekend of New Orleans’ Jazz Fest, and he was loaded with gigs on the following Sunday, starting early and going on until late. We had a wonderful visit, and I appreciate them taking the time to come. Casey was already a good musician when I first met him when he was about fifteen. Today, he is world class, firmly embedded in the unique New Orleans musical scene. I think he was certainly influenced by his wonderfully talented song-writing father, and perhaps a bit by his father’s friend; Casey didn’t say so, but he did come all the way up New Orleans to see me, and to get some of his mother’s wonderful gumbo…I’m not sure which, maybe both, but thankful either way.

That’s a lot how we need to live our lives . . . thankful either way. But, I’m here to tell you that sometimes this is easier said than done. Thankfulness and gratitude can help us keep our focus on what we have, which is a precious lot. Fear, cynicism, and bitterness can keep us focused on what we lack, which can also be a lot, but for certain is an exponentially lot more if that is our focus. We can so focus on what we lack that we completely ignore what we have, perhaps thinking we have nothing. I can’t think of a much sadder way to live one’s life, though some lives are born into trouble and end out worse. It is a mystery of the human condition that I cannot explain. Perhaps Job can explain it better than me. In fact, I’m sure he can. Read Job for yourself and see. It’s there for you, and it’s free, except for what it may cost you in thinking, which for some folks is an unacceptable price to ever have to pay. Thinking can cause a host of problems for some, so they’d rather just not do it. I don’t think I am one of those people. Thinking is liberating, particularly when thinking results in our shedding shackles we had placed on ourselves by our previously bad thinking. It’s those moments of epiphany that help fill our lives with breathless wonder. We expand and can never again fit the same container, but migrate to a larger one, which soon also becomes too confining. If we are lucky, we expand and expand until the earth can no longer contain us, then enter a new dimension. Liquids conform to the shape of their vessel, but a gas does so only in a closed vessel . . . leave it open, and it will expand beyond the vessel, mixing with the eternal ether that surrounds it, while still being the gas it was, only expanded beyond containment. That’s what gratitude and thankfulness will get you. And if we focus on it close enough, we will sublimate like frozen carbon dioxide, going straight from a solid to a gas. Sublimation!! Ah! That’s what I’m looking for. Where does one find it? It is not typically a property of humans possess, but that does not mean I will call off the search for its discovery, nor does it mean that I if I am successful I will be able to successfully communicate it to others. So many things we just have to discover for ourselves.

This morning I am struck with something the great G.K. Chesterton said, but I am often struck by Chesterton.

The modern habit of saying “This is my opinion, but I may be wrong” is entirely irrational. If I say that it may be wrong I say that it is not my opinion.

I wish I had said that. It is not much of an opinion if the one advancing it admits of error during its expression. Who needs an opinion like that? What good is it to the one expressing it, or to those to whom it is expressed. Surely, I have some opinions that are based on facts that are erroneous, but my opinion is still my opinion. I suppose when one expresses an opinion filled with a trepidatious temerity they are just talking to hear themselves talk. Why don’t they just be quiet? Well, that’s a difficult thing for humans, isn’t it?

“I like dark roast coffee, french-pressed or percolated,” I said, expressing my opinion, which was not really an opinion at all, but a simple declaration.

“No you don’t,” said Eustis, the village expert. “The water for coffee should never exceed 190 degrees. Boiling water ruins the coffee, extracting things that are not desirable, making it bitter and undrinkable. And percolated coffee is the worst of all. No, you don’t like it; you can’t like it, and that’s a fact. You’re wrong.”

“Hmmmm!” I thought to myself.

Sensing that my silence was some sort of weakness, or deference to his superior knowledge, Eustis continued, “Those methods of coffee making have been long discredited by the coffee intelligentsia and a knowledgeable person like yourself should not make such statements in the future.”

“Hmmmm!” I said again. Eustis fell silent, perhaps having run out of coffee facts that were germane to my opinion and his admonition.

“Eustis,” I asked, “What has any of that to do with what I like?”

“Everything, since what you like is not based on good coffee science,” he replied.

I didn’t feel like continuing a conversation where I was getting lectured about what I like, since there is no arguing about what someone likes, so I asked him about a recent two-day fishing trip he had taken, and rather than hearing about the fishing, I began to hear endless things about back-weighted, tapered, floating fly lines versus mid-weighted double tapered sinking lines, and the advantages of home-tied flies over commercially produced ones, and the proper technique and presentation of the fly. I listened for an hour I suppose.

“But, how many fish did you catch?” I asked.

“Oh, I didn’t actually catch any fish. By the time I got through properly preparing all my tackle, I had very little time to spend fishing. Fly fishing is very complicated, and one must get everything just right if one is to catch fish properly,” he said.

“I wonder if the fish knows the difference between being caught properly or not?” I mused, more to myself than to Eustis, but he was on the ready for an attack.

“That’s a foolish question,” he snarled back at me. It was an excellent question I thought to myself as I sipped on some inferior perked coffee; but that is my opinion. Eustis would not agree. He went on and on in his world of the tiniest perfections, and I enjoyed my coffee. Eustis would not drink any of it, refusing it because of its tainted inferiority. I declined to show him my fly-fishing equipment when he asked me. Mine is not up to Eustis’s specifications. The fish I catch are all caught improperly, though, I have discovered a direct proportion between the number of fish that I catch and the time I spend having a hook in the water. I suppose the smart fish just laugh at my equipment and technique. The stupid ones, however, seem readily caught. If one were to ask me my opinion, I’d say that there are lots of stupid fish, though I am not offering my opinion here, because a couple of those fish seemed pretty smart to me, at least as far as fish go. I am not qualified to speak on the intelligence of fish. I am qualified to set the hook on one, reel it in, filet it, and fry it up to eat, afterward having a cup of inferior coffee.

Eustis seems to focus a lot of energy on what he does not have. There is always just one more thing he needs to get everything just right, to make him excel at whatever he is doing and to make his life complete. He enjoys the excelling more than he enjoys the doing. Of course, everyone wants to do well, even excel, but in his case, I don’t suppose he ever really enjoyed a cup of coffee or a fishing trip . . . something is always missing which distracts him from simply being there, doing what he is dong for the sheer joy of it, meanwhile laughing at an elderly matron fishing in a creek from a bridge on a sunny day, using, of all things, horror beyond horror, a cane pole, a cork, and chunk of sun-baked rotten chicken liver. The catfish never knew that the method used to catch him was outdated and old-fashioned, and I’ll bet a dollar to a dime that the fish-matron was not on a catch and release program, either . . . she was on a catch and eat program. This would have been lost on Eustis, even the sunshiny day.

Eustis has no wrong opinions. They are all flawless, but de-toothed by thousands of mitigations endlessly considered, so that the end result is nothing. At least the fish-matron enjoyed fishing and the fresh cooked fish. When she broke her cane pole, she just went out to the cane break behind her house and whacked off another one. It would never have occurred to her to pay for one. She needs to meet Eustis and show him what a wall of silence sounds like. She would think he was speaking something besides English as she continued to pull in fish while Eustis was explaining all the things she was doing wrong. Maybe he should explain things to the fish who seem completely unaware of their own ignorance in the matter.

We left George and Myra’s on Sunday morning in time enough to have a late lunch at Pappadeaux’s in Beaumont, TX. I never tire of the fried soft shell crabs, and though my stomach has been in a state of rebellion for the past month, for reasons as yet undetermined, I ate the crabs and a big bowl of crawfish bisque. I later paid dearly for it, but would do it again.

We checked in at the BATCC hotel and they were their usual cordial selves. The valet parkers and the hotel bellmen know me by now. They also know that I am a good tipper, so you’d think a celebrity arrived. The hotel clerk had everything in order and we went to our room. By dark, neither Debbie nor I had any interest in anything but sleeping, since we were still full from our lunch and had kept late hours the night before.

I was up early, though, made a pot of coffee and was rearing to go to get to my appointment with Gooday. I arrived at the Fast-Track Lab at 6:30 and had my blood drawn. I knew from the number of vials they drew that something was amiss. “I am on a research protocol. Did you draw the blood for the flow cytometry?” I asked the phlebotomist.

She looked at her orders. “No. There is no research order here.” I had heard this before. “Then, you will be seeing me again later,” I said. I don’t think she believed me. They see so many people there that they have a very ordered way they go about things or else there would be mass confusion, which is sometimes the case anyway. It is best not to rock the boat but I am seldom still in a boat, much to everyone’s displeasure.

While I am in the waiting room to see Gooday, I am reminded once again of how difficult things are for others who face the worst odds in dealing with their very personal type of cancer. I posted this on FaceBook while I was there. Rather than type it all again, I will paste it here as a quote.

Let me just say something about thankfulness . . . when one can walk into this place on their own two feet, get the opportunity to see and visit with others who are not able to do so, listen to their stories about their own valiant struggle with a cancer that is far more malevolent and urgent than one’s own, one learns to have a thankfulness, caring, and compassion that transcends one’s own personal fears. There are people here who are as ill as any human being can be, and they are not just here . . . they are everywhere. God bless them all. I am thankful for what I have at this moment. This side of heaven, this moment is all we have. We should never let it pass unnoticed! When we look at others in the midst of their struggles, we should never forget the mirror into which we are peering. The eyes that peer back have in them our own reflection.

 

I will write more about this on my blog, later, but for the moment, I am completely overwhelmed, as I always am, of all the facsimiles of ME I see in the lobby. I see me at every turn. It is a powerfully humbling experience to understand that it is not others I see with respirators, wheelchairs, face masks . . . it is visions of myself. That includes the courage and defiance I see glimmering in the eyes of those who for all outward appearances have no apparent reason to show defiance. The best part of the human spirit is alive and well here, though housed in bodies that are failing, as they all eventually must. Carpe diem, y’all. Make the day yours!

I will not retract a single word of what I wrote then, nor can I improve it. It is an opinion worthy of tenacity, not temerity. It is perhaps one of the best opinions I have ever had. I will not taint it with any sort of double-mindedness.

As I was sitting there, I couldn’t help overhearing the conversation between an elderly man seated next to me and a lady from volunteer services whom he apparently knew from previous visits. They were both Jewish. I heard him tell her that he was waiting to see Gooday, so I knew we had CLL in common. After they finished talking, I leaned over to him and said, “Shalom Aleichem!”

“Ah! Aleichem Shalom!” he said with a big smile. He was hairless from chemotherapy, had a mask on his chin but not covering his face, though it no doubt should have been, and was obviously very ill. “Are you Jewish with that accent?” he asked, still smiling.

“No, sir, but I know when to say Shalom Aleichem.” He smiled even bigger. “And your accent, I cannot place it,” I said.

“Johannesburg,” he replied.

“Boy, that’s a long way to come for treatment.”

“No, no,” he said. “I have lived in Big College Town, USA, for many years, but have been coming to see Gooday for treatment of my CLL for a long time. They really know their business here.”

“I am here to see Gooday, too,” I said. He peered at me. The bond was established at that moment. “You are young to have CLL, but they are seeing it in younger people these days. Are you doing well at the moment?”

“I think so. I am in remission and am here for my annual checkup. I am on a research protocol that requires me to come here at least once a year, even though I am seen by my Oncologist back home.”

“The cancer research they do here is beyond comparison. That is why I came here instead of getting treated in Big College Town. I wanted the treatment here, as well as to be contributing something to their research. I was doing well with the CLL, but then out of nowhere I developed an extremely aggressive T-Cell Lymphoma, and the chemotherapy for it is much worse then the CLL chemo,” adding, softly, “I have been having a hard time.”

I said nothing, just listened. He continued, “I am about six months into the treatment for the T-Cell Lymphoma, which has the worst side effects. I was depending on my wife of 36 years, my helper, my mate, my ultimate care-giver, when she died suddenly just a few weeks ago. I have really been lost without her.” I was stunned. I was speechless. I was stymied. I had no words. He shed tears for a minute or two, took off his glasses and wiped his eyes, then said, “My daughter is here with me. I have been here taking treatments for a while, now. I am so thankful I have my children to look after me. I have been lost without my wife.”

I reached over and touched his hand. I can’t say that there was any healing in my touch, but I can say that there is always comfort when one human being establishes empathetic contact with another, and the touch reinforces it. We sat silently, then the harsh moment eased.

We chit-chatted for a minute or two, then I said, “I have a friend who just completed his Urology residency at the medical school there in Big College Town. He is back home in Mississippi, now, building his practice. He had lots of options, but chose the Big College Town Medical School over several other places.”

“Then he is a wise young man, because we have a cutting edge urology department there, though urology is not my specialty.”

“You are a physician then?” I asked.

“Oh, yes. I am Professor Emeritus of Neurological Radiology at the medical school at Big College Town.”

“Well, I know what a neurologist does, and I know what a radiologist does, but what does a neurological radiologist do?” I asked.

“We have cutting edge technology at Big College Town Medical Center where we use Magnetic Resonance Imaging in real time to focus special Ultrasounds to blast brain tumors that are otherwise inoperable. I have researched this and taught it for many years. Now, I am retired, the Professor Emeritus, though I still work as much as I want, and when I feel like it. The best thing about being Professor Emeritus is that I have a permanently assigned parking space and no longer have to look for a place to park.” When he said this, his eyes twinkled and he laughed out loud. I laughed with him. There is certainly healing in laughter.

I told him of a friend of mind who had just passed away due to an aggressive Glioblastoma, which is a type of brain tumor. He said he was sorry about my friend, then became excited about talking about his work. “Every glio is aggressive. Glio is a very hard brain tumor to treat. It is unique to the glio cells in the brain and is a type of tumor which occurs nowhere else. All the research we are doing in my department at Big College Town Medical Center is designed to treat exactly this type of cancer. We are making great strides every day, but are still so far away. There is yet much work to do. Some glios we can treat successfully, but others, depending on their location, are so aggressive and so quickly damaging to the personality and motor functions that our best efforts fail them. There is so much to do, but we will not yield. I chaired the whole department of Neurological Radiology for many years. What we can do now is amazing, but there is no resting place, since we can save some, and we lose some, and sometimes we don’t know why one patient responds and another one doesn’t. There is still a long way to go, though we seem to stay right on the edge of a breakthrough.”

Talking about his work animated him in a way that amazed me. He sounds just like Gooday. “We are right on the edge,” he said.

“We are right on the edge,” Gooday always says.

We continued our talk for a few more minutes, then the receptionist called out, “Dr. Emeritus!”

“Well, I have to go now to see Gooday. I will see how my CLL is behaving while I am dealing with this T-Cell Lymphoma. It, too, has been showing signs of acting up, perhaps triggering this lymphoma. I am in good hands. They treat me very well here. There is no place like this for blood cancers and other types of cancers, too. Of course, if I had Glioblastoma, I’d want to be treated by my colleagues at Big College Town. What they know here about treating Glio is what they learn from us. We all share the common bond of wanting to defeat cancer. It is fascinating and rewarding work, but frequently frustrating, because cancer has a mind of its own. Now, you be well,” he said with a bow, “and Shalom Aleichem.”

Aleichem Shalom,” I said back, rising to shake his hand. Then he was gone through the door. There was a man who was thankful in the middle of the greatest loss. He made me thankful for two things: What I had, and having made his acquaintance. I am humbled by his grace in the face of tremendous loss. I expanded as the result of a simple, ten minute conversation. People are so multifaceted: we usually get to view just one facet or two . . . sometimes the ones they meant to reveal to us, and others, the ones they exposed by accident. When the accidental exposures outshine the ones presented, we can get a glimpse of the quality of the real person inside. I hope folks see similar facets in me that I saw in Dr. Emeritus, because they shone with the prettiest, brightest, most beautifully colored light, with not a hint of a shadow in them. May God richly bless him and multiply the grace I have already seen so that his portion grows ever larger, ever richer, and eventually sublimates in an expansion that fills the ether. It is what we should all hope for each other.

I heard my own name called out by a familiar voice. It was Nurse Alice, who smiled the biggest smile. She always does. She was standing in the doorway with my chart in her hand waving me in, and giving me a hug at the same time. Every touch from her has in it the essence of healing. She examined me, looked a bit concerned when I flinched as she  checked for the tell-tale enlarged spleen.

“What’s that?” she asked.

“I’ve been having some stomach troubles, and that’s a bit tender.” She then asked me to describe my stomach troubles, which I did, and she said, “You should see a GI right away to get this checked out.”

“My appointment is Wednesday,” I said.

“Good,” she smiled. I got another hug.

Then she asked me the usual CLL questions and I was able to shake my head no to each one. “I have no complaints…none at all…I am not even complaining about this stomach. Every time I come here I learn all over that I have no reason to complain about anything!” I then made a couple of cryptically clever remarks which didn’t escape Nurse Alice, nor did I expect them to, I just wanted to try to make her laugh, which I did.

“You’re so funny,” she said, then hugged me again.

In waltzed Gooday. “Looking good,” he said, reviewing the results of my CBC. Then he told me about the new things on the horizon, and impending FDA approval on a new treatment, which was likely to be the one I would take if and when I needed treatment again. Then we talked about life in general. I then told Nurse Alice that they had neglected to draw the blood for the research protocol. It was the only time I saw her frown. She looked at her chart.

“I will call them at the lab. I’m sorry, but you will have to go back over there,” she said.

“Make sure they know I’m coming and what to do when I get there,” I said back.

“Don’t worry, I will.” I then realized that it was pointless for me to have said that.

I bid them adieu, Gooday gave me his typical bear hug, Nurse Alice hugged one more time, said she would let me know the results of the flow cytometry as soon as it was back from pathology, and I was off back to the lab. I was saddened that I did not see Dr. Emeritus again. I said to Nurse Alice, “Please give him my best and highest regards.”

“Oh! You know him?” she asked.

“Yes. We had the most wonderfully poignant and inspiring conversation in the waiting room,” I said.

“I will convey your regards,” she said. There is no question in my mind that she did, too. When I got back to the lab, the chief phlebotomist said, “You told us we’d see you again, and here you are.” She seemed surprised. I wondered about that. I am still wondering about that. I could speculate about it, but all the phlebotomists know is what’s on the orders that are printed out and given to them. They will not do one thing more, nor will they do one thing less. Anything out of the ordinary confuses them. I confuse them every time I go in there, since they never seem to have the complete orders. Am I complaining? Nah! They can stick me as many times as they want to in the lab. I’d only complain if they had to do a bone marrow aspiration over again. I might do more than complain, then. I might use some mild bad language.

We had a nice trip home with a stop at the Bass Pro Shop in Baton Rouge, where I spent too much money buying things I didn’t need, but sure wanted. By Wednesday I had gotten an e-mail from Nurse Alice with the flow cytometry report attached. “Congratulations,” she said, “You are still in a complete remission.”

I was blessed going in, and I was blessed coming out. I am thankful for the spirit every person I saw that was fighting their own very personal, sometimes fatal battle. Some fighting them courageously. Some fighting them quietly. Some fighting them on the strength of others long after their own has failed them.

I have told you my opinion about this, and I am not wrong. I will never be wrong about this. You . . . I’m not so sure about you, but if you are one of these people, then see in yourself what I have seen in you, and you may find out that what was once your opinion is not your real opinion after all. Me?? I have lots opinions, and not a single wrong one, else not a one of them would continue as my opinion. Some of them are quite amusing, though, and best kept to myself.

Now for a cup of perked coffee!

Post Script

I learned from Gooday of the passing of Britain’s Dr. Terry Hamblin, one of the world’s leading Hematologists and experts on CLL. Remarkably, Dr. Hamblin had CLL himself. I enjoyed every word of his blog where he mixed science with his very real Christian faith and theology. While I have the faith and the theology, it is the science I lack. Dr. Hamblin  did not lack this. While I don’t mourn for any lack of science, I mourn for the passing of this great man who took the time to write such an excellent blog, informing me with facts about the disease we shared, and on more than one occasion taking the time to respond to an e-mail from me. Britain’s health-care system required Dr. Hamblin to retire from medical practice at 65, but that did not stop his research. He is mourned by many and will be sorely missed. He had visited my blog several times. I cannot claim that he was a regular reader, but had indicated that he had enjoyed reading my thoughts. Like so many with CLL, he died from a secondary cancer. Now rest peacefully in the arms of the Lord, Dr. Hamblin. Gooday and the rest of your colleagues will miss your presence and your continuing contributions, and will continue to build on the contributions you made while you were with us.

If you have CLL, you will want to read his blog, which his family says will stay up in perpetuity.

Here is the link: http://mutated-unmuated.blogspot.com/

For you universal health-care fans, Dr. Hamblin had some rather unrepentently blunt things to say about how medical care works in Britain, and how your health care may be decided by bureaucratic committees rather than by you and your doctors. Many here point to the wonderful system they have there. Many there do not like the system at all. You will have to decide for yourself. I think you know my opinion about the Affordable Care Act. I have yet to see any indication that anything I have yet opined needs to be modified. Others have offered their opinions, including those who are in charge of its implementation and administration, but I declare I believe they are wrong . . . I’m just waiting for them to say so, as they seem to be dangerously flirting with remorse, unpreparedness, and, no doubt, thoughts of resignation from government service. I will wish them well on their future endeavors.

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