Slivers of Fear

I felt slivers of fear as I awaited the doctor’s return call that never came this morning. There was not a damn thing I could do about the results of the PET scan that was done two days ago, so I tried to keep those slivers from growing into sharpened logs. But when I went to my medical appointment, the anxiety grew more than a touch. The oncologist revealed both potentially good news and likely bad news. The good news is that the PET scan did not reveal multiple “bright spots” that would suggest the spread of cancer. But that’s no guarantee. The bad news is that the mass in my right lung showed up as considerably brighter on the screen than we would have liked it to be. “You’re hoping for a brightness level of less than 2,” she said, “and yours was 9.5. That suggests a very high probability that the mass is malignant. I’ve seen brightness levels as high as 20, so it’s not as bad as it could be by far.” I didn’t record her, so the words are what I remember, not necessarily exactly what she said. But she made it clear that she was quite confident I have a cancerous mass growing in the lower lobe of my right lung.

Next steps are as follows: 1) biopsy of the mass (she suggests going to Little Rock, which is what we’ll do); 2) test lung capacity for reasons I do not recall; 3) MRI or CT scan of head to check for any malignancies in my brain. The last one, she emphasized, was only as a precaution, not because there was any reason to believe there was any cancer in my brain.  An MRI is preferable, but I told her of my bad experiences with pain in my neck when I attempted MRIs before. She’s likely to arrange a CT scan, instead.

As for treatment, assuming her preliminary diagnosis is correct, she said the most likely course of action would be removal of the tumor or, perhaps, the lobe of right lung that’s involved. Radiation would probably follow and, perhaps, chemo.

This thing is apt to completely wreck my schedule for the foreseeable future. Not that I have anything on my schedule that’s life-or-death important. But I have commitments that I’ll have to break and social engagements I’ll have to miss. I’ll have to let multiple people know what’s up and will have to listen to their well-intentioned and heart-felt affirmations that all will be well. People want to say something but often don’t know what to say when met with a potentially scary diagnosis and an uncertain future for someone they know. I can relate to that. I’ve felt the discomfort of not knowing what to say, yet wanting with all my heart to empathize and emphasize that I’m here and I care. For that reason, I rather wish I’d not have already let the cat out of the bag to a few folks who are close to me in one way or another. Their lives and mine would be easier if they were ignorant of my health challenges. On the other hand, I suspect there may be a time in the not-too-distant future that those awkward expressions of support will be extremely meaningful to me and perhaps requisite to maintaining my sanity.

By now, anyone who’s reading this will have rightfully concluded that, as far as I’m concerned, I believe the biopsy will confirm what I already know: I have lung cancer. The biopsy and the subsequent surgery will reveal much more information, including whether it is very bad and deadly or, as I suspect and hope, only moderately bad and fixable.

Yes, it could be something else and not cancer. But that would surprise me. And it would surprise the oncologist I saw today. So I’m not going to cling to a wish and a hope. I’m going to face up to it and deal with the process as directly as I can. I may retreat to my private space behind the garage and weep inconsolably on occasion, but I’ll otherwise try to put on my brave face and convince people that I’m a man of steel. There’s no way! I’m not a man of steel. But I’m not one to wallow in self-pity, either, if I can prevent myself from doing it. And sometimes I can. We’ll see whether I wither. I tend to be fine unless someone around me cracks, emotionally. And then it’s like the flood gates have opened. I hate that about myself. It’s an embarrassing character flaw. Seriously; I think something got broken when my masculinity meter was installed in my brain.

On one hand, it hasn’t quite hit me. It’s still not real. On the other, I’m coming to grips with the reality that I’m going to have to wrestle with a medical problem and go through some uncomfortable experiences.  My father died of lung cancer. But I don’t plan to. Then again, neither did he.

***

I began this post before I saw the oncologist today. I’m including what I wrote beforehand as a reminder to myself what was going through my mind before my visit with the oncologist.

My primary care physician called me yesterday afternoon to discuss the results of my PET scan. But I was sitting with my wife and some friends in a bar in the central part of the Village, enjoying a drink and some intriguing tacos. The number that popped up on my cell did not look familiar, so I didn’t answer it. When I listened to the voice message a few minutes later, I tried to return the call but the phone was answered with “this CHI telephone number cannot receive incoming calls.” The doctor’s message asked me to call him back today between the hours of 8 and 4:30 and he wanted to know whether I had yet set up an appointment to see the oncologist to whom he referred me. I called just a minute or two after 8 this morning, but he hadn’t arrived yet. The woman who answered the phone said she would leave a message on his desk to call me. He didn’t return the call (I write this sentence as an addendum at 5:51 p.m).

It occurs to me (rather frequently, and not just recently) that it is hard to arrange to have communications with medical professionals. They are busy and don’t have time to chat on the phone. But technology exists to enable them to communicate online with patients during hours that fit their schedule. Yet they seem to use those capabilities rarely. For example, I can post messages to my doctors using a patient portal. The doctors could use the same portal to respond or to initiate communications to me. But I think I’ve only received one message through the portal in all the time I’ve used it. Either my questions go unanswered or I have to ask them again during my next office visit. It’s frustrating. I wonder why the results of my PET scan weren’t posted to the patient portal in the same way the results of my CT scan and my X-rays were posted?

 

About John Swinburn

"Love not what you are but what you may become."― Miguel de Cervantes
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2 Responses to Slivers of Fear

  1. Bev Wigney says:

    John – Although it seems an inadequate response, I’m very sorry about today’s news. I hope that the mass is contained and that if the biopsy reveals it to be LC, that it is of the type that is more responsive to treatment. If you ever want someone to discuss things with, please feel that you can count on me. I am probably a good resource person if you need someone to give you some feedback. One piece of advice — probably corny sounding — but things have not changed that much from yesterday, and probably won’t change that much tomorrow. The only difference is that you have a name for what’s wrong. Try to maintain as much normalcy as you can in the days to come. Take care. bev

  2. Teresa says:

    Well, please don’t die. I’m still not finished with you.

    ox

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