Category Archives: Health

Bones Scanned

At 8:30 am this morning Nick, a kind nuclear med technician at Littleton Adventist, swabbed the crook of my elbow and took a needle from a lead-lined box. It contained radioactive isotopes of calcium. Makes sense for a bone scan. With a quick, painless insertion he sent the isotopes into my blood stream. Took thirty seconds.

“Come back at noon. Drink 32 ounces of water. Be sure to use the bathroom before you return.” I did that.

Kate and I left at 7:20 am. There was a heavy fog on Hwy 285 going downhill. It struck me as an apt metaphor. This time between the discovery of my rising PSA and getting data about the cancer puts me in, as I said yesterday, a cloud of unknowing. Today we traveled through it, paying attention, careful attention to brake lights, possible crashes.

The bone scan will lift a bit of the fog, make the path from here a bit more clear. But. The CT scan was not approved yet. Ironically, I stopped at the Post Office on the way home to pick up a certified letter. It was the denial of coverage from New West physicians for the axumin scan. Out of the fog into the fog.

Nick had me remove my belt, all the metal from my pants, my glasses. I could leave my shoes on. Hearing aid? No, the machine won’t bother it. I laid down on the slide, a curved piece of metal. Would you like a warm blanket? Yes. (This would prove to be a mistake.)

We velcro your arms to your sides. That way you don’t block the scan. Oh. The straight jacket like cover went over the warm blanket. Are you claustrophobic? Yes. Hmmm.

This was the mistake with the warm blanket. Since as near as I can discern, my claustrophobia came into existence during time spent in an iron lung as a toddler, heat makes it worse. The claustrophobia comes when the box like device with the screen attached comes down within an inch or so of the nose.

It’ll be there for about four or five minutes. OK. I’ll close my eyes.

A bone scan. Not me.

So here’s a very human anomaly. That scanner scared me more in those five minutes than that which it sought to find. Cancer. Weird. I held it together, but there were moments when my muscles tightened and my stomach clenched. Also, I had this urge, a strong urge, to open my eyes. Which I did a couple of times. And quickly closed them.

After the seventeen minutes in which the scan covered my body, Nick said he’d go see the radiologist. He might need other shots. He didn’t.

I thanked Nick for his kindness. Well, we try. The folks that come to see us are not having a good time. I’m not. And your kindness made this part easier. I didn’t say, but I could have, I’m driving through heavy fog right now.

Nick assured me that the radiologist would read the scan right away and that it would be ready by late afternoon. That’s in time to inform our appointment with Dr. Gilroy tomorrow. At least we’ll have some data.

Sigh

Leave in an hour for the mythical imaging services of Littleton Adventist. I’ll begin to believe in them when they put me on the slide and move me into the magnets. An unhappy yesterday. It had me reaching for distractions, not from the cancer, but from the American health care system.

I know it’s a cliche and I know the comparison is overblown, but I’m going to say it anyway. One of the three young women from Centura Health benefits said, when I asked to pay what my insurance company would have paid: “I don’t make the policy, I just abide by it.” Cindy and Vanessa, too. All of those I talked to except Amanda. I’m just following orders.

A fascinating book on the Holocaust dispelled the myth that the Germans who served as its agents were psychopaths or ideologues. No, they were just ordinary people who chose, over and over again, to do what they’d been told. These agents of denial are all following the arcane and often invisible dictats of bureaucracies built to serve themselves. In the case of United Health Care it’s about the bottom line. In the case of Medicare it’s about the rules. In both instances the clerks, the phone callers and phone answerers, the case managers, (I find myself wanting to put quotation marks around a lot of these words.), the administrators all sleep because they don’t make the policy, they just abide by it.

In neither case is the patient’s health the prime objective. The prime objective is what sustains the organization. You may say, what’s the alternative? I would say single payer health care. Why? Because in that situation it is the patient’s health that drives the system, it is the rule. Would it be perfect, without self-serving bureaucracy? No. Certainly not. But it would have as its raison d’etre the health of the country’s populace. That would make these frustrations much, much different. At least to me.

In the meantime we have a system that, not all the time, but frequently enough, puts people like me, desperate for some answers, in between dollars and health care. It also serves to dehumanize its agents who must again and again say, no, that’s not been approved. No, sorry, I don’t make policy, I just abide by it.

Health “benefits” from Centura called this morning. Hey, guess what? You know those scans? Not approved. What! Twice in two weeks? What’s going on?

abdominal snowman

In spite of being the patient, hereinafter to be known as the victim, of our health care system, I was having a hell of time accessing any of it.

I don’t like phones. I like to see the people I’m talking to, even if I know them. It’s a thing and I’ve had it for decades.

This morning, however, was a phone morning. I called United Health Care. Nothing had been submitted for approval. Say what? It’s the day before these scans which were ordered last Friday. Who submits these things for approval? The doctor.

Anova Healthcare. Amanda, the heroine of the morning, or good Amanda as I think of her now, answered. The Littleton office handles authorizations. OH, I thought. She’s going to make me call them. Nope. She called. Vanessa, who has responsibility for my case, would call me back. Amanda had talked to the manager of the authorization department. I assume the same one that failed to get my axumin scan through.

Anyhow, Vanessa never called. I got a call again from Centura where I learned of another authorization hurdle. It’s internal to New West Physicians and focuses on Medicare claims. Oh. AARP Secure Horizons, which Kate and I have, is a Medicare advantage plan administered by United Health Care. Apparently this is the first point of contact with potential payors.

At the VRCC, Jan. 2018

Cindy answered. I’m sad and a little scared. Can you help me with this? The doctor ordering the test marked it as routine and Vanessa (bad Vanessa) only sent it to them yesterday at 3 pm. Oh, come on. The doctor had to change routine to urgent. Could you call the doctor? No, we usually don’t do that.

OK. Back on the phone. This time Amanda again. Answering machine. I told her what Cindy said. Amanda called me back in a short time. She’d already talked to Cindy. (Good Amanda) The bone scan is authorized. The CT is awaiting a decision. We’re half way there.

Here’s the thing though. All these phone calls, which took me all morning, were made by me, the victim. Ratcheting up my stress level each time. And, the result, which I sought all morning, was to get back to where I thought we were to begin with.

This left me with my head in my hands, talking to Kate at the dinner table, saying often, I don’t know. I really don’t know. A sort of ringing and head pressure came and went, my body trying to adjust itself to the feelings coursing through it.

I’m glad I’m not anxious, not much anyhow. But, I am stressed.

Celebrate

From this last October

On Kate’s caring bridge site I posted about her upcoming surgery, June 3rd, to implant the feeding tube port. This represents the end of a long winding process requiring TPN, ct scans, visits (when we could get them) to the pulmonologist, to Lisa Gidday, our primary care doc, to Westermann, the rheumatologist, and one last visit, on May 29, to the cardiologist.

Ed Smith, the surgeon said, “Well, at least I don’t we’ll do you extreme harm now.” Reassuring. I give him props for insisting on the TPN, for Kate being as prepared physically as she can be for this procedure. I thought he was stalling. “Well, we’ve put this off as long as we could, haven’t we?” he said. First, do no harm.

To this, May 2019

Once the j-tube is in and Kate has it for ongoing nutritional support the remaining unaddressed challenge will be her lung disease. For the summer.

We had a t-bone, risotto, and asparagus last night to celebrate getting a date for the j-tube. Somehow I over-cooked the t-bone. Still good, but we like’em rare, not medium. Guess who cleaned up? Kate.

It feels so good to see her walking, doing ordinary chores. Laughing. Gaining weight. A victory already.

Gilroy on Friday

Dr. Gilroy put me on his schedule for Friday. I’ll have had the ct and the MRI the day before. Hopefully this visit will begin to push back the veil. There may be a treatment plan or there may be a need to fight for the axumin scan. We’ll see.

A Cloud of Unknowing

Dante Luca Signorelli (Own-work-Georges-Jansoone-JoJan-Taken-on-30-April-2008)

Another big medical week. But they all seem to be right now. Minor: had my teeth cleaned yesterday. “Your teeth are so clean.” Hygienist. So one part of my body’s in good shape.

Kate and I visit Ed Smith today. He’s the surgeon who will, we’ve been hoping for several months now, implant the j-tube. The pulmonologist has cleared her, the last remaining hurdle. I’m expecting (hoping?) that we will schedule a date.

On Thursday I have the standard of care imaging studies for prostate cancer reemergence, a ct and an mri. The axumin scan is a pet-scan. In a followup visit to Dr. Gilroy, the radiation oncologist, we’ll see what these tests have to say and revisit the axumin scan if it seems like it would increase the accuracy and efficacy of treatment.

William Blake

Each step on this journey makes things a bit more real. A bit more sphincter tightening. Right now, I have no idea where I am, except that I’m in a place I’d rather not be. No diagnosis except a rising PSA. No treatment plan. Just the knowledge that somewhere in my body are cells working against my survival.

Death Hendrick Andriessen 1607–1655

It’s a strange place to be, ethereal, filled with fantasy. They’ll find distant metastases and I’m doomed. They’ll find a small, localized tumor, zap it with a Buck Roger’s ray gun. I return to a new life free of cancer. The disease is slow, but not fully treatable. I’ll have to live for years with an invader slowly gaining more and more territory. A losing game of go.

I’m sleeping well, not overly distracted or anxious. Yet this is a moment of existential angst, the sort of moment that defines existential angst. Dante helps me see it more clearly. Here are the famous first lines from Canto One, modified just a bit.

Two thirds through the journey of my life
  I find myself within a forest dark,
  For the straightforward pathway has been lost.

Ah me! how hard a thing it is to say
  What is this forest savage, rough, and stern,
  Which in the very thought renews the fear.

So bitter is it, death is little more...

But, since it came to good, I will recount all that happened there.” This is v. 4 of the Canto and my hope. We’ll see.

Are you going to be o.k.?

Mortality signals. Coming through loud and strong. A frisson of the world without me. “Are you going to be ok,” Kate asked, “Psychologically?” “Yeah, I think so. I’ll tell you if I’m not.”

Yamantaka

Hard to avoid running the recent news all the way out to the literal end. (see post below) I’m neither a pessimist nor an optimist, I’m a realist. The indicators are not good. But. At this point that’s all they are. Indicators. As Kate also said, “We need more data.” Yes, an axumin scan would have helped, but a ct and an mri will get us started.

Yamantaka and I have been friends for a long time now. I’ve imagined my death, my corpse. Meditated on it. When my mind insists on following the bread crumbs, I let it. I end up the same place Yamantaka has taken me. The same place we all come to. The question isn’t whether, but when.

Yes, this is morbid. And, yes, even if all the signs are negative, nothing’s happening soon. But I can’t be other than where I am. Right now, on this chilly May Saturday, I’m still absorbing.

I do feel I’ll be ok. Psychologically. Which doesn’t mean I won’t be scared. The unknown is the landscape between here and death. Will treatments be able to slow down the cancer? Is there still a chance for a cure? Unknown.

There a couple of mantras I’ve said over and over for quite a while. Live until you die. I intend to do that. Live in the present. I’m doing that except for those pesky moments when the blood hound of logic starts baying at the trail. I still have books to write, paintings to finish, friends and family. Dogs. Those will not change. Books to read. Places to go. Mountains and nearby states to explore.

On that last. I will see the National Gallery of Art in Taipei. This is the museum which contains the Qing emperors collection, all the best of Chinese art over its long history. Chiang Kai-Shek gathered the collection and took it with him to Taiwan after a losing fight against Mao and the Red Army.

Here is a large copy of one piece I most want to see:

Fan Kuan, Travelers with Mountains and Streams, Song Dynasty

Oh, I see

So. Saw Dr. Gilroy, the radiation oncologist. His office, appropriately, is close to Skyridge Hospital where I left my prostate 4 years ago. Gilroy is a man in his 50’s, a friendly broad face, short cut but curly hair, a thick, but not fat body, and a kind demeanor.

Still hoping to dodge the bullet

All the folks at Anova have been kind. Which helps. Kate was there, sitting second chair this time, as I’ve done for her appointments over the last year. These patient rooms are the same. An exam table, two chairs for the patient and support person, a stool and a small desk projecting from the wall, a computer. Sometimes drug company posters on the wall: Pulmonary Hypertension and You, How to rate your bowel movements, Glaucoma and the eye. Bland wall colors. Sensible carpet. A sense of depersonalization. The focus is on you, the sick one. Or, the maybe sick one.

The news so far is sobering. The rise from .1 in January of 2018 to 1.3 in February of this year is rapid according to Gilroy. The velocity of the rise can be an indicator of the severity of the reemergence.

“Have you had a digital exam since your prostatectomy?” In this case of course digital means, with a digit. “No.” “I need to do one.” “Oh.” “Drop your trousers and bend over the exam table.” And so I did.

He could find no nodules. Had he found one he said it would have indicated the likelihood of a localized reemergence. Rapid velocity. No digitally findable nodules. Could mean metastases.

Next up are the traditional imaging techniques. CT and MRI. The MRI scans bones for mets and the CT looks for what I’m not sure. Next week sometime.

I’m not afraid to die. But. I’m not eager either. The gap between those two does produce a quickening, a stomach drop, but I’m not experiencing, nor do I expect to experience, dread. Into each life a little death must fall.

Immoral and Barbaric

CBE and visitors

It’s been warm, even hot down the hill. When I went to the Avengers movie, it was 85 when I came out. Largest temperature swing I can recall. It was 66 when I got back to Shadow Mountain. Not a fan of the heat.

Kate went to the board meeting at CBE last night. She stayed for the whole time, three hours. Her stamina has improved a great deal and she’s using her rollator less and less.

Just put the all season tires in the truck. Headed to Stevinson’s this morning to replace the snow tires and get some dye in the air conditioning system. We’re gonna fix the air conditioning one way or the other this time.

Then, Anova Cancer Care at 12:30. Told Kate yesterday that I want definitive treatment rather than quick treatment. My anxiety level is low. Doesn’t mean I’m not feeling some stress. Of course I am. Just not projecting outcomes, results. So, Dr. Gilroy, here we come.

I did see this yesterday, Judge rips insurance company: “A federal judge blasted UnitedHealthcare last month for its “immoral and barbaric” denials of treatment for cancer patients. He made the comments in recusing himself from hearing a class-action lawsuit because of his own cancer battle — and in so doing thrust himself into a heated debate in the oncology world.” The issues are slightly different, but guess which insurance carrier I have?Immo

The Doris Day Lifeway

Beltane                                                                             Cancer Moon

cinema avengers-infinity-war3Saw Avengers: Endgame on Tuesday. This was to distract me from being pissed at Centura Health, United Health Care and whoever else dragged their feet, waiting until the day before and the day of to interfere with my planned axumin scan. It worked. I know who dies in endgame, but I won’t tell. It’s a long movie and I’m not a super fan, so I know I missed a lot of the inside jokes and things being tidied up from the multiple movies that preceded it. I did, however, come out calm. The universe had been returned to mostly normal, seder had been restored. The underlying reason we like superheroes, mysteries, thrillers.

By that evening I was sufficiently chill to sleep through the night, something I almost never do. I spoke my mind to the health “benefits” folks at Centura Health, distracted myself, got some perspective, and slept just fine. Not  deep breaths or wonky meditation, but workable.

glaucoma-and-eye-pressure-800-latestYesterday I focused on an organ, the eye. Played space invaders for the nice man, or, as they insist on calling it, a visual field test. My field of vision is holding steady, no glaucoma encroachment. Pressures are good, the hole in my cornea is, as my ophthalmologist says, is patent. That means it’s still draining the fluid for me. Part of me, an important part, is functional and remaining so. With help from latanoprost and good surveillance.

Joy
Joy

On Friday I see the Anova Cancer Care folks. This will be a somewhat changed consult since I didn’t do the axumin scan. I plan to ask them what sort of imaging work will make their work optimal. If they believe in the axumin scan enough, I may agree to pay for it. $4,000 versus life? Not a tough call.

After lungs on Monday morning, a crowning achievement on Monday afternoon, the scan hooha on Tuesday, the glaucoma checkup yesterday, and the oncologist visit tomorrow afternoon, we’ll have finished off another very medical week. Something fun is in order for the weekend.

virtues doris-day-59053Simcha. I’m coming to believe that joy and gratitude may be sufficient to get us all the way through life. I don’t mean silly puffy gladness, or just saying thank you reflexively, but heart and mind illuminating joy and deeply felt gratitude.

What gives you joy? Be grateful for it. I’m gonna call this the Doris Day lifeway, worthy of emulation.