Category Archives: Health

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.

 

 

Tear Down That Wall

Beltane                                                                        Cancer Moon

cancer who decidesNo scan. AARP Secure Horizons denied payment. When I asked how much it would be as a self pay. Pet scan, $2,600, axium dose somewhere between $1,000 and $3,000. Nope. And, I made the decision for the same reason AARP probably did. The scan’s accuracy is around 60% and that goes down the lower the PSA. My PSA is well above the reemergence marker of .2 at 1.3, but it’s still pretty low for imaging studies.

What makes me angry about this is that I scheduled this scan on April 25th. That’s twenty days ago. If they’d come up with these problems even last week, I’d have had a chance to call the insurance company and Dr. Eigner, Dr. Gilroy, see if something could be done; or, if it was clear no payment option existed, what new imaging studies I could have. Now I still have to do all that, but 20 days after I put this study on my calendar. Meanwhile those little cancer cells don’t care. They just go right on chasing immortality at the expense of my health.

I had an image yesterday of our health care, that is, doctors, nurses, labs, hospitals. The entire province of folks and structures who provide medical services. They’re all there, most of them competent, capable people who got into medicine to help people, to cure illness. Now. Imagine all of those people and their support behind a huge wall, a really huge wall, the best wall possible.

cancer universal health careOn this side of the wall, where you and I are, is the money used to pay everybody in medicine. If you are a one percenter, there’s a special gate you can walk through anytime you need it. You can access all of the excellent care that is available. If you’re the rest of us, no money passes through the wall unless several corporate, bureaucratic entities and individual people within them, say yes. Those entities include private, for-profit health insurance companies, medicare, medicaid, non-profit health insurance, banks, credit card companies.

According to this CNBC article, $3.4 trillion dollars pass from the money side of the wall to the health care delivery side of the wall each year. That’s $3.4 trillion. In this interesting nyt article, author Matt Bruenig makes a case for treating health insurance premiums that employees pay for company insurance plans as taxes. He makes this claim: “Moving from our system to a European-style system would make our overall system of taxes and health insurance payments much more progressive for the majority of Americans, because the elimination of private health premiums would more than offset the rise in formal taxes for all but the wealthy.”

cancer insSuch a shift would eliminate all of the corporate gate-keepers who have an interest in profit for their company. Perhaps they could all go work for the TSA and use their previous employment experience to annoy the hell out of travelers.

Would such a change mean I get my scan? Not necessarily. There would still be assessments made about the appropriateness of particular care; but, those decisions would be made by people who have my health and the health of our medical system at heart, not the wallets of investors. In that case I’d trust a decision to withhold the scan as a considered one based on those criteria, not on what’s best for United Health Care’s bottom line.

Health Care in the USA

Beltane                                                                    Cancer Moon

climate change vollmanHere is a cautionary tale about health care. On April 24th or 25th I scheduled my axumin scan for today. That’s twenty days ago. It’s purpose is to tell where my cancer reemergence is located and to help stage it. This after the rise in PSA caused consternation for both me and my urologist, Dr. Eigner. I was glad we could get it on the calendar so quickly.

Yesterday, after we got home from Dr. Gupta’s there were two messages on the phone. One was an “urgent” message from the hospital health benefits department. The double speak in the system unveiled itself when the “benefits” person told me they did not have approval for my scan. This is at 11:30 am the day before the scan. Eigner didn’t get the information to the insurance company in a timely fashion, they said. The insurance company, which claimed to have 72 hours to make a decision couldn’t make one in time.

I could come in today, they said, and sign a waiver for self-pay and await the decision or I could reschedule. If you recall, the axumin isotope is in limited production. The hospital only gets a dose once a week. There was no certainty about when I could reschedule either. They put me in a box by waiting until midday of the day before the scan. It’s possible the insurance company could deny it. It’s new, though not experimental.

axiumShould I go in today, sign the waiver, and keep my appointment with the radiation oncologist on Friday? When I told Eigner my PSA rise, he said, “Get another PSA done and get into see me ASAP.” A post-prostatectomy rise in the PSA to .2 is a biochemical recurrence. That’s the clinical definition. Mine was at 1.3. Everyone I spoke with had a sense of urgency about this. That made me have one, too.

I’m going in, gonna sign the waiver. My concern level, for myself, is high. I’m distracted. An occasional feeling of dread passes through me, floats my stomach. It’s fear of the unknown. Though I’m not afraid to die, I’m not eager, either. In this case it seems that time matters. At least to me.

I did not need to worry about money, too. This problem cranked up my anxiety level by putting another weight on the scale. Not. Needed.

Life Goes On, In Endless Song, Above Earth’s Lamentations.

Beltane                                                                                  Cancer Moon

cancer songSpent yesterday and Saturday reorganizing the loft, continuing work in the Intensive Journal. Oh, and made a meatloaf. Better than my mom’s. I printed a copy of Jennie’s Dead as it is so far, about 50,000 words, found my third draft of Superior Wolf, and pulled out the Phantom Queen which I haven’t seen in years. Today and tomorrow I’m going to file the remaining documents from CBE religious school, mussar, First Sundays. Then, I’m going to take each book that is piled up near my chairs, give the top ten priority for reading, and shelve the rest.

In order to create the revised Superior Wolf I’m going to read books featuring werewolves, about wolves and the middle ages, about wolves. I want this draft to be more like The Historian or Jonathan Strange and Mr. Norrel in its scope, perhaps with a bit of Moby Dick. I had this ambition for Superior Wolf to begin with, but let the task of finishing get in the way. This time, more patience, please.

Today is Kate’s appointment with Dr. Gupta. The lung diagnosis and the fitness for surgery assessment. A big deal, in other words. Later in the day is her coronation, four permanent crowns. Queen Kate.

cancer pet scanTomorrow the whole rising PSA matter gets lit up and scanned by the hospital’s p.e.t. machinery. Takes about 30 minutes, slowly moving from pelvis to head. This moves me from an indicator based concern, PSA, to the reality of where the cancer is now, in my body. I’m hopeful there are no metastases, of course, that whatever has returned is confined to the prostate fossa. I’m not ready for my expiration date, but, then, I suppose nobody ever really is. The best result in this case is a localized reemergence treatable with the Cyberknife.

Today I have to eat a high protein, low carb diet. No exercise 24 hours before. No caffeine 12 hours before. No food six hours before. Only water. Kate’s been going through these high stakes test for almost 8 months now. There’s a rule here. If you look, you’ll find something. Whether that something is important or not, well… It will be up to the radiation oncologists to define the significance of the pet scan. That comes on Friday at 2 pm. I feel fine, no symptoms.