Sometimes, I am naive. I am inclined to think that when I’m face to face with someone and they are speaking they are telling the truth, because I think everyone is honest and telling the truth. My naiveté has led me to a few disappointments in my time. Perhaps you have experienced this, too. I am not naive about anything I read, though, or hear on recorded media. In fact, I am much more inclined to cynicism then. I believe next to nothing I read and less of what I hear. It just never occurs to me on the front end that the person I am speaking to is a liar; they always get the benefit of the doubt. During conversation, though, I append individual values to the pieces, keeping tabs as the conversation goes along. When things fail to add up, or the sum of what I observe adds up to less than what I am being presented, I start to move along. It must add up. It simply must.
A good liar never presents you with a stark choice, though. They always mix enough truth with a lie to call your attention to the partial truth when they discern that they are not adding up to you. They make you question your own judgment. They are good at what they do, particularly the complete cons, since they more than likely have already gotten you to like them enough that you want to believe them. This is how they work.
I am not naive about CLL treatments, either, nor am I naive to treatment, having been treated before. The newbies in the CLL groups I am a member of express all the common fears, worries, and concerns we’ve all had, with us veterans offering reassurances which likely have little impact, since everyone is certain they are an exception to all the rules and their Chronic Lymphocytic Leukemia is far more deadly than anything anyone else has. Still, we reassure. Still they worry. New worriers show up every day, with none of them having been around yet long enough to determine that there are far more joining than exiting.
I am thankful to be one of those veterans offering calm reassurance. Nothing bothers me. I’ve been through all this before, and as a true veteran, I fearlessly face anything CLL can throw at me: unfaltering, unafraid, standing tall in the face of adversity as if it were a mere inconvenience, as if it were a common housefly buzzing around my sweaty brow in the torpor of an August afternoon, annoying but easily swatted away.
I looked off to the Southwest and saw the dark clouds building in the distance. In just a few minutes it seemed they had risen thousands of feet, driven by violent updrafts, the anvil tops of the clouds spreading out in the distance, enveloping the sky. The clouds were indeed rising with the updrafts, but the winds that drove them closer made them seem to rise above the horizon all the much faster, the curvature of the Earth exacerbating this vision so that the rapidly approaching clouds loomed over me in a menacing manner. The heart of the approaching storm grew dark, a vision of pitch as the winds around me began to pick up. I soon noticed the first flashes of lighting. The distant, low rumble of thunder caused the dogs to whine. It was a constant rumble, a growl lower than Babalu’s. He came to my side. The other dogs had already gathered near the door to make sure to be handy when I went inside. They’d make their case for inside comfort, too, if I’d stand still for it.
Those afternoon thunderstorms in Mississippi can be violent, producing damaging winds, hail, and tornadoes. It is not an uncommon thing. They also bring a lot of relief from the heat, the updrafts sucking up the ground heat and its moisture far up into the atmosphere, feeding the storm and cooling itself off, causing the moisture to condense into rain. If the updrafts are violent enough, the rain swirls up instead of down, then freezes, returning to the earth as hail. The number of things that can go wrong in the midst of a severe thunderstorm are many and several. I am not naive about that.
“We need to start you on some treatment, soon,” Hemosapien said back in early December. I knew it was coming. I am not naive. “Your white blood cell count is doubling every six months. Right now it’s 75,000. Six months or less it will be 150,000. In a year, it will be over 300,000.”
“I know,” I said. “I was hoping I could make it until I get to medicare age to start treatment.”
“Not gonna make that,” he said. When it rains, it pours like a summer thunderstorm. It can rain two inches in thirty minutes.
I had bad insurance when I got treated the first time. This was prior to Obamacare’s full implementation and I had a $100,000 annual limitation. It’s nearly impossible not to exceed $100,000 while going through chemo. Obamacare eliminated that limitation, but the waivers on the limitation granted to many insurers on grandfathered plans got me. The union-backed health insurance I was on was granted waiver after waiver. I was long through with chemo before the waivers finally went away. By that time, treatment was behind me. It was expensive.
Then, for nine untreated years, my insurance was excellent. It was excellent, but I needed no treatment, which is exactly what insurance companies hope for, as for a decade, I was a net gain for them. Now, I am fully aware that coming off successful treatment and no longer needing treatment is a good thing. I am thankful for that. I am also thankful for the good insurance for which I had no major medical claims, and was thankful for it right until 11:59PM January 31, 2021, when my benefits under COBRA were exhausted. Fortunately, because of the HIPPA regulations, exhaustion of COBRA benefits is a qualifying event, so I was able to buy insurance since I was already insured. My new insurance started at 12:00AM February 1, 2021. I am thankful there was no time I was not covered.
Instead of the low deductible, low maximum out of pocket expense policy I had, I now have a high deductible, extremely high maximum out of pocket policy. Just one day after this new policy went into effect I get a call, today from Hemosapien’s nurse Jessica.
“Dr. Hemosapien wants to set up an appointment to talk about your treatment,” she said, mentioning that the blood-work I gave at their lab last week was sent off for some additional testing. “He thinks you need to start treatment right away.”
“Nurse Jessica, I was sitting here thinking to myself that I needed to call Hemosapien for an appointment to discuss my upcoming treatment. Your call is very timely.” She laughed am my repeating of her words back.
“Can you come next Wednesday at 10:00?” she asked.
“I can, and I will be there,” I said. “Tell Hemosapien I said for him to study up, and to plan on some extra time because we’ll likely be there a while.”
She laughed out loud and said, “I’ll be sure to tell him.”
“I’m not kidding. He knows me. He knows I’ll have a lot of questions.”
“Don’t worry,” she said as we hung up the phone.
He does know me. He knows me well. I am thankful for him. I am thankful for the other physicians that practice there. I am thankful for the whole clinic. Meridian, Mississippi, is fortunate to have this clinic serving those with cancer.
I am not naive to dealing with the intricacies of insurance companies. The policy is the policy. If you know what your own policy says, you’ll seldom be disappointed with what your own insurers may do. You’ll know what they are supposed to do, and you can hold them to it. You can even more effectively plead your case in any gray areas, and the gray areas eventually crop up.
The first drops of rain started to fall as the wind picked up precipitously, its coolness in stark contrast to the hot, dead air it replaced. The lightning flashes were not so distant nos, as the thunder grew louder. The dogs whined their displeasure, begging to go inside. I wasn’t ready yet, watching it draw nearer and nearer, wishing it was dark so I could get my camera and take some lightning photos as it approached across the distance. My view to the southwest was now unobscured, the trees having all been removed by a tornado in another violent thunderstorm in April of 2019. If there is any benefit to a tornado, it is that it will indeed give you some new landscaping to look at. I was benefiting from that new landscape at the moment. The memory of that tornado is still fresh in my mind. It could have taken far more than the trees.
My new insurance makes BATCC (Big-as-Texas Cancer Center) inaccessible for me. It will fairly well be inaccessible until I get to Medicare age in eighteen months. Still, having also been a patient there for twelve years, I am not bashful, and it has been rumored that I am not bashful anyway. Things are a bit different there because Dr. Gooday has retired. Dr. Melbourne Gooday2 took Gooday’s place, and I like him, but having only seen him briefly for a few times since Gooday’s retirement, we have no real relationship. His office, though, had been worrying me to make a checkup appointment, and had sent me a message through their secure messaging center more than once. I had nixed a couple of previous appointments because they insisted on giving me one for Friday afternoon, and I am not traveling home from Houston on a Friday afternoon. I had told her I would schedule later. When I did not, she contacted me again.
Having found Dr. Gooday2’s email address after a diligent and persistent search back in December, I decided then to send him an email. I had specific questions. I received an automatic out-of-office response, since it was the holidays. The day having passed for his return, received no answer. I later forwarded him a copy of the original email. I got no response. Then, today of all days, I got a message from Nurse Lisa, inquiring about making an appointment. I pasted my message to Gooday2 in my response to her. She very politely replied back, offering encouragement for me to look for programs that help with drug co-pays, etc., and saying that it would be difficult for Dr. Gooday2 to respond to my request without direct contact. I do not go away so easily.
“It is a simple question,” I replied. “Dr. Gooday2 should be able to answer this for me, and I encourage you to ask him to do so, since I have tried direct contact and got no response.” I heard nothing back from her.
About 2:00pm my phone rang and awakened me from a nap. It was an area code 713 number. That is Houston. I answered.
“Hello,” I said.
“John (my first name and how they know me at BATCC), this is Dr. Gooday2.”
I was floored. BATCC is the top cancer center in the entire world. Dr. Gooday2 is one of the top hematologists in the top cancer hospital and clinic in the entire world. The entire east wing of floor eight has nothing but doctors who specialize in the treatment and research for Chronic Lymphocytic Leukemia. They are busy folks, but no busier than Hemosapien. There are only so many hours in a day, and all of them budget their time. Today, I was an off-budget time expense for Gooday2. Nevertheless, he took the time, answered my questions, and seemed willing to give me more time if I needed it. I let him off the hook. I got the information I needed, thanked him and said goodbye. I guess I was naive about my situation.
“We get these kinds of issues with insurance all the time,” said Gooday2 before we hung up, “Come back when you can, or sooner if you need us. You know how to make an appointment. We’ll always consider you our patient. I’m glad you have a good hematologist at home.”
So that one does not misunderstand, I’ve had calls out of the blue from Hemosapien, unsolicited calls. Regular readers will remember that I looked out my window on the Sunday morning the day after the April 2019 tornado and there sat Hemosapien on his big green John Deere tractor with grapple forks helping to clear storm debris from around my house. One never forgets that. Dr. Gooday2 is not coming to help me clear tornado debris. No one expects him to. I didn’t expect Hemosapien, either. I am still humbled by this.
I continued to observe the approaching storm, wondering out loud if there was a tornado hidden in the midst of it. The dogs apparently heard me and began to whine in harmony, Babalu carrying the bass, Elsa Belle singing lead, and Relay doing the tenor. Relay is old enough that her hearing is going, so she was a little flat. I didn’t say anything about it but I noticed the other dogs looking at her with disdain. She is naive about her own condition.
I worried a bit with the dogs. I worried a bit about my CLL. I worried about needing treatment. I worried about the effectiveness of any new treatment. I worried about the possible side effects of the treatment. I worried about my insurance. I worried about what all this was going to cost. I worried about things I have no control over. I am still worrying.
I am not naive about any of these things. I am a veteran. Only newbies worry about these things. I am one of those who offer encouragement and support to those who worry about these things, but let me tell you that when the other shoe drops, all pretense at some superior, experienced veteran status flies right out the window. It is me and it is now. It is Yogi Berra’s déjà vu all over again. Everything I worried about in 2009 is just as worrying in 2021, even more so since my 2009 worrying is just a memory and my current worrying is the real thing. Every rational thought hides itself in the darkest heart of the approaching storm, and every fear rises in the storm’s updraft until it swells in the sky blocking out the view of anything else until all you can see is your own fear. It is all overwhelming. I tell myself I know better, but I find no assurance in my reassurance, which is unfortunately the way of those who need reassurance. My ears are like Relay’s, not what they once were. I laugh at myself for being so foolish, then immediately return to my brooding, to the voice in my head warning me that my CLL is different than anyone else’s; it is more deadly; it is more expensive; it is beyond my, and Hemosapien’s, and Gooday2’s understanding. Any puffed up notions I once had about my veteran superiority have vanished.
I may not be naive about anything except my own naiveté. Perhaps I am more naive than I thought.
A nearby flash of lightning drove Me and the dogs inside. The storm howled. It still howls. It rages. The sun will shine tomorrow…maybe over a new landscape.
I’m not naive about that the least little bit.
©2021 Mississippi Chris Sharp