It was a quiet weekend of pain management. And nausea.

I realized after a week of exhaustion, all these things people have said forever about taking care of the caregiver. I have a new respect for my little brother, who seemingly tirelessly treks to our mom’s house several times a week to do that in my distance-based absence. Especially when he was there when she fell and cut her leg open on the side of her bedframe resulting in 6 weeks of old-people-hospital-hell a few years back. It seemed like I could only watch from a distance.

Point is, I never really got that close to “weekends” in the secular manner, given that I have always just worked when the work needs to get done, more or less, rarely or ever driven by this strange weekly shut-down that is apparently normal for other people. Especially as a church musician, frequently Saturdays and Sundays are packed with extra work that requires diligence, focus, and energy. On Monday sometimes you just want to sleep and sometimes you can. Anyway, I hammered hard all week on behalf of my beloved Kathy and on Saturday it seemed like an eerie pall of nothingness and silence where there was nothing I could do. No doctors’ staffs (staves?) I could call on to keep moving things forward.

Can I just say that was weird?

I spent the weekend at home with a suffering mate who did not feel like doing much besides experimenting with staving off all the flavors of nausea induced by a cornucopia of pain medications she had been given. I made tiny bits of many kinds of food Some of which worked and some of which didn’t. Washed a lot of dishes. Continued to build my respect for domestic responsibility.

Last week we finally (finally) got the biopsy onto the radar, and by pushing of course, we got it moved up from the proposed January 6 to the 60% sooner December 26 while the surgeon was on call at the hospital. Then this odd weekend of silence. Kathy did not play or conduct on Sunday, but this was not a problem as many stepped up to shoulder parts of the burden. The depth of resources to help her get through this makes one humble indeed. She rested. She indulged in further experiments of moderating her own medications and Sunday afternoon she began to feel like, on the whole, she felt better when taking less medicine.

Naturally. It’s frustrating as her caregiver to see her choose to miss a dose to see what will happen. Kathy has always been a rebel – in her own way I’m sure the pain nurses will give her an earful but I also know they are no equals when it comes to Kathy Stewart. Just saying.

Yesterday (Monday) [Day 24] started off with calls to four separate doctors’ offices – the oncologist, the surgical oncologist, the gastroenterologist and the pain specialist. I’ll spare the details but they all required checking in for various threads of this unwieldy story. We checked in. Got the consult with the pain doctor scheduled (not the procedure of course, naturally). While we were at it, we got the 3rd needed scan scheduled, by going to the scheduling desk in person and managing it verbally. That will be Friday. Excellent (listen to me – now I call “excellent” something which three weeks ago was an unconscionably long ways out).

Megan and I were out doing errands (getting the car ready for the upcoming road trip, and ingredients for our foods for Kathy’s family Christmas gathering). The Mayo Clinic called and we had another good conversation about our upcoming plans. It turns out I pushed so enthusiastically on all that up there (i.e. Minnesota) that they had two Kathy tracks and wanted to make sure there were really two tracks – they had her down for cancer treatment and also gastroenterology treatment. I had to explain all that, but I was talking to someone who understood what I was saying and had the authority to rein things in. Among other things she said, as I figured all along but nobody had said in so many words, that even though they needed all the scans and reports and tests from Oklahoma, that it was pretty normal for them to do them all over again when we get up there. I chalk that up to the “If you want something done right you have to do it yourself” school where many or all of us reading this were raised. I smiled quietly to myself.

The other thing was that they already had her tentatively scheduled for surgery to do a stent – which told me a lot – obviously they are at least making a little room for a most likely finding when Kathy does finally get up there. Because I was driving, I did not write down nor can I remember the exact stent but the most salient part of the discussion was that the surgeon who does the stent was the only surgeon there who can do this stent because it is a very complicated and quite dangerous undertaking. Which of course is one of the reasons you decide to go to The Mayo Clinic – because they will do things your Tulsa doctor has already told you are not possible.

So yeah, it’s roller coaster of medical greatness, come to settle in nicely for Kathy’s care plan. And of course the total, complete, and hugely condemning reality of Big Healthcare is – guess what – (you know this already) – we still have not had the biopsy let alone got results back. Thank God the people in Minnesota are free to exercise common sense. There is way too little of that going around down here.

– – – – – – – – – – – – – – –

FLASH
OMG the dominoes at Mayo have begun tipping! I can’t say it is completely unexpected, but I think it is really good news. After this morning’s very long interview, technically her first appointment with Mayo, they called back about an hour later, and offered to schedule Kathy to do their own endoscopic biopsy on Thursday January 2. Now she has three (3) tracks, the new one with their Hepatobiliary and Pancreas Surgery Division. We are getting the ducks lined up but it looks like we drive north Saturday, then walk in the front door at Mayo on Tuesday. They will spend the day doing the initial work-up, to be best prepared for the biopsy Thursday (Wednesday being New Year’s Day). Whether we come back sooner or later will depend on what they find. We are anticipating multiple trips regardless of what they conclude. I promise to write while we are there. It feels good to have this set in stone now.
/FLASH

– – – – – – – – – – – – – – –

Tonight is Christmas Eve. Musicians everywhere are rising to the occasion, and Kathy told me last night when we discussed whether to take William or Marjoleine or Taylor up on their offers to come play for her, she says, “No, I want to try to do it myself.” Under the circumstances, we have a depth of resources uncustomary; we told William to enjoy Christmas Eve singing with his mom, we told Marjoleine to spare herself the long night of driving up from Tulsa, and we know Taylor will be present reuniting with his family, and can seamlessly dovetail if needed. We have the most loving safety net ever. Things will be fine. Then tomorrow we will enjoy Christmas Day.

Silence speaks volumes: Not a single word from anyone about my crazy rambling about synchronicity, which by the way I learned by watching Ancient Aliens, a favorite of Kathy’s. The family that conspiracy theorizes together (space aliens, multiple universes, etc) finds a place for miracles and other such unexplainable phenomena. On that thought I will close with the first of two favorite poems of the season, gleaned of course by singing them over the years:

In the bleak mid-winter
Frosty wind made moan
Earth stood hard as iron,
Water like a stone;
Snow had fallen, snow on snow
Snow on snow,
In the bleak mid-winter
Long ago.

As culture embraces legends like a warm fleece (thanks John), note that it only snows in Bethlehem a little, once every few years, and it usually only sticks for a day.

People are strange and wonderful.

December 21, 2024 [Day 22]

Really it’s about the nausea caused by the new pain management regimen.  With any luck the nausea is short-term, like a couple days, while the pain management team, now coming to the house, adjusts dosages and frequencies.  I’m confident they will get The Droning Voice comfortable.  Of course I am troubled that it took 20 days for the pain management process to begin.

Saturday morning here.  Good morning.  The circle on this email group gets a little bigger every time, as people learn of The Droning Voice’s state.  Transitioning it to a more public blog will probably be next – we seem to have crossed over the line from a smaller group who are in the thick of it, to a broader group of those who haven’t been caught up in it over the past three weeks for whatever reason.  How do I say, “There was an announcement made at church,” which is how these things go.  We don’t want anyone to feel like they have been left out of the conversation.  Yes, prayers are good.  And to those for whom “prayer” is an awkward term, the synchronicity of the universe(s) allows all that prayer energy to move freely and even moves it with purpose in benevolent directions.  It is a primary force here at our house in these moments, and we thank everyone who thinks of us when such thought brings them both a smile and a worry today.  Your thoughts apparently oil God’s machinery whether you know it or not, and you don’t have to know it to think about her.  So thank you.  No question, “what goes around comes around.”  Poor as we all are.  Fellow strugglers.

To recap, The Droning Voice went to the ER on November 30 (22 days ago) [Day 1] in terrible abdominal pain.  First is was nagging pain in early October, then it got steadily worse.  At the beginning of November she called the doctor who set an appointment for a month out (Dec 6) [Day 7] for a “stomach ache.”  While waiting for the appointment, things ultimately got so bad we took her to Urgent Care the Saturday after Thanksgiving (Nov 30) [Day 1].  Urgent Care immediately sent her to the Emergency Room.  When she was done, the CT report said “… highly concerning for primary pancreatic malignancy …” (they did not give us this report).  Obviously we are calling this [Day 1].  What really happened is a nurse came out and verbally explained to The Droning Voice how she had a fist sized mass on her pancreas which could be cancer.  We became worried even though we knew nothing about pancreas cancer except that we’d heard it was bad.  This is how I wound up writing these updates and you are reading them. 

In a nutshell, here is the awful truth about the current state of healthcare in the United States:  Even though they found this mass on November 30 [Day 1], today is December 21 [Day 22] and we still do not have a firm diagnosis.  There is not a biopsy yet.  One day soon, when I re-fashion this into a blog, you can go back and review the frustrating posts about trying to get a biopsy done, which we’ve known was needed since November 30th [Day 1].  But today we have some refreshing good news (although one hates to think it could be “too little too late” but let’s not get ahead of it).  Yesterday [Day 21] we finally had the long awaited consultation appointment with the surgeon who can do the needed biopsy with the endoscope and the ultrasound and the remote-control needle, who will then grab some of the actual tumor, and bring it out into the world for all to see (at least the local pathologist).

I digress, maybe because I use this writing as personal therapy to get stuff off my chest/out for the world to see, by saying he started the meeting by scheduling the biopsy procedure for January 6 [Day 38].  However, thanks to The Velvet Hammer, by the time we were done with the … conversation … it had been moved up to the day after Christmas, December 26 [Day 27] at 8:00am. 

So yes, in a heart-breaking twist where someone in Big Health did the right thing, the biopsy specialist moved the appointment sooner once he understood the urgency.  This means, before he met with the patient, he obviously did not understand the urgency.  Which implicates a system where urgency is not one of the pieces in the decision process, and one where the doctor appears to be the last one to know what is going on.  Both of these are very bad things.

Once he realized the urgency then … you will not believe the irony … he decided he should perform the biopsy while he was on call at the hospital.  “Irony,” of course, because he has been on call at the hospital for the two weeks prior to yesterday’s appointment.  His staff had said “You can’t talk to him when he’s on call” but now, of course, he himself actually scheduled the procedure when he would be on call because he knew it was urgent.

Heart-breaking because, if the urgency had been taken into account when the biopsy was ordered back on December 9 [Day 10] he might have done the biopsy already, over two weeks sooner, and we’d already know now if it is pancreas cancer or not.

You can’t make this up.  The happy side of this note: Now it is scheduled.  Finally.  Yay.

Allow me to relate a more heart-warming story in the midst of this bout of Healthcare Hell.  When she woke up this morning early to get dressed and get in the car and make the one-hour drive to where the biopsy specialist is located, The Droning Voice looked me straight in the eye and said, “I can’t do it.”  She was referring to the likelihood of her ongoing nausea inducing diarrhea or vomiting during the drive, and of course how increasingly exhausted she continues to get with each day.  Thinking fast, the advocate (me) called the clinic to work that one out.  To their huge credit they immediately offered to conduct the consultation via teleconference (i.e. over a Zoom-like interface, which I am guessing cost bazillions of dollars for them to implement).  One hour later, The Droning Voice was talking with the specialist live from her bed, via the internet.

It’s amazing to me that this system can respond like this, yet they don’t have the common sense to schedule a biopsy quickly at a time when the doc is already at the hospital.

‘Learned a new word: “Phlegmon: a specialized type of abscess that can arise from a small duodenal ulcer perforation which runs right by the head of the pancreas. It can look very similar to cancer on scans.”  Hmm.

An MD friend helping me navigate this told me about phlegmons.  Have any of her team mentioned phlegmons, ever, a single time?  No they have not.  Kind of like the first time anyone on the team told us about a celiac block for pain was on [Day 17].  You’d think when someone comes to the ER doubled up in abdominal pain, where they then find a mass choking the nerves going down into her guts, they might mention a celiac block, or better, order one.

Oh no.  We got that ordered on December 17 [Day 18] only by taking our own initiative, then having to push on them.  But the scheduling department for the doctor that does celiac blocks has not even called us yet to schedule it, today, 4 days after it was ordered (oh and today is Saturday, which assures us we won’t hear from them until Monday at the earliest).  Next week is Christmas when all doctors are eager to put in some overtime.  (That was a joke).

Reminder the initial report also says “Pancreatitis could have a similar appearance” but goes on to caution, “However, given regional vascular involvement as described, malignancy is favored.”  The radiologist that wrote this was the most articulate of the bunch!  I’d get him a beer.  Of course we were never just handed this document.  Ever.  First, I had to be aware it existed, then know it belongs to the patient, and then know to request it.  Many patients don’t understand these kinds of things belong to them, and never ask for them.  That is very sad to me.  I might try to fix that one day (but not today, I’ve got my hands full today).

To review:

A) Pain gets put by the wayside when a mass is discovered
B) To an oncologist everything looks like cancer

It’s a lot to think about.  This note (“note”) is getting long.  I’ll close with a Mayo update.  We got all the wheels turning together in Rochester.  We have already done the initial screening for a new patient, then we have scheduled the first appointment where the team looks at all the stuff they need to do their review process and come up with their approach strategy (December 24 in the morning via teleconference.  Yes.  Christmas Eve).  Up until yesterday, the state of the biopsy remained a complete wildcard.  Now we know it will take place on December 26 [Day 27], with results 3-5 work days later.  Then, actual wet samples (i.e. live tissue) will be refrigerated-overnighted to Mayo (“loaned” to Mayo who is “borrowing” them, ha) where the Mayo pathologists will get a look.  In my efforts to speed this up somehow, Mayo clarified to me yesterday afternoon that even if we got to Rochester sooner, they would likely not be able to do a biopsy any faster than what we arranged for here in Oklahoma.  Although disappointing, it is really good to get real puzzle pieces like this right on the table.  It’s like, when Mayo says it, you can just believe it and act accordingly.  If the clowns with stethoscopes down here say it, you wonder exactly what they are not telling you, for instance how they could do a celiac block or they could send over a pain management team, but then it takes them weeks to even mention these things ([Day 17] and [Day 19], respectively).  And that, only after banging on them until your hand is bleeding.  At Mayo I am asking questions and getting answers within hours.  One doc said, “At Mayo we try to treat every patient like their own family would treat them.”  I can’t even describe how much peace I got, hearing that.

I feel like Galahad in Holy Grail who thoughtfully looks up the castle wall and, after a pause, he asks the insulting Frenchman, “Is there someone else up there we could talk to?”

Still unknown is what will happen if the biopsy shows no malignancy.  Will Mayo suddenly lose interest?  We still have this fist-sized mass that needs to not be inside The Droning Voice’s abdomen, that the Tulsa surgeon said he could not remove.  Anyway, one step at a time, eh?

December 17, 2024 [Day 18]

Some years ago I stood in line waiting for my luggage, alongside Garrison Keillor.  He had done a performance in Tulsa the night before, and we were on the same flight to Dallas.  He said he was in a hurry to get back to catch his wife in Carmen in St. Paul that evening. 

I said, “Your wife does Carmen?”

“She’s playing viola in the pit.”

I couldn’t resist, “My wife has sung the role a couple times.”

His response, “You married a Carmen?  Your life must be very interesting.”

I’ll take original conversations with famous celebrities for $200, Alex.  I did not make that up.  And yes … my life is very interesting thanks to The Droning Voice.

I tried writing youall last night and it was just too hard.  Imagine the old scene where the guy writes, then tears the sheet off the pad, balls it up and throws it toward the trash can where it glances off the rim and lands on the floor with all the other balled up pieces of paper.  Yesterday the Surgical Oncologist essentially told us it’s cancer, based just on what he could see on the CT scan, the biopsy is how you get absolute confirmation of malignancy, and he could also tell from the scan it would not be removable.  The medical term is “locally advanced.” 

The best case would be that it has not spread at all and would get treated with 6 poor-quality months of chemotherapy.  The way they tell it has not spread is to do a CT scan of the chest, plus a PET scan, plus a Staging Laparoscopy where he gets an actual look inside her abdomen to check for spread of the disease which is not detected on the scans.

He said he would not recommend chemo if he finds spread of the disease on the inside of her abdomen.  He said those patients do not survive, and the chemo only gets them a couple more poor-quality months.

Note you don’t hear about people who live to a ripe old age after beating cancer of the pancreas.  (Although I realize there are a small number).  All this appears to get a small percentage of the people who go through it “a little bit longer.”  Like just long enough to get the full chemo nightmare.  Ach.  That’s depressing.  We did not think that was very good at all.

We took the opportunity to bring the conversation back to The Droning Voice’s acute severe abdominal pain.  He told us there was a relatively simple procedure called a celiac plexus block that blocks the main nerve to the abdomen and usually gets good results. 

We quietly wondered why we are only hearing about this for the first time 17 days after going to the ER complaining of acute severe abdominal pain.

Today I called a friend at The Mayo Clinic and sent him the CT report.  He is a cardiologist and I wanted to ask why, if they can do a heart bypass, why they can’t do a pancreas bypass.  He agreed they tended to be more aggressive at the Mayo Clinic in their approach to pancreas tumor removal, and he would ask the Mayo surgeon who does all the pancreas cancer cases.  He told me, “If it was my wife, this is the one guy I would trust to do it.”  He told me if I don’t hear from him by the end of the day tomorrow, it was my right as a patient to call him up and ride him for an answer.  I guess at Mayo they care about the patients.  That was refreshing under the circumstances.  Forgive me if that sounds snarky.

That was quite an interesting development.  But wait.  He called me back 10 minutes later, and told me the surgeon wants to see The Droning Voice, and Mayo can get us into the schedule before the end of the month.

I guess sometimes dad-bears can keep up with momma-bears.  Sometimes a gatherer needs a hunter.

So while we wait around here for the biopsy and the remaining scans that still have yet to be done (today is [Day 18]), or the pain specialist who can do the celiac plexus block, but can only consult to talk about it after he gets back from vacation next Monday [Day 24], before considering moving forward with it, The Droning Voice gets to think about the interesting idea presented by the Mayo Clinic.

That would mean we have a lot of stuff to do before we might consider heading to Mayo, and it also depends completely on whether The Droning Voice even wants to take it on.  She might not want to, but at least it’s nice to have the option.

Obviously it is notable that Mayo called back in only 10 minutes, just saying.  We pray for strength to make whatever effort is called for, and the guidance to make good decisions.

That’s better news than if I had sent any of the drafts from last night.  Meanwhile we really would like to get that celiac block done.  Why did it take 17 days for Big Health to put a relatively simple procedure that affords substantial long-term relief from abdominal pain on the table?  Why will it be 24 days before we can even talk to a pain doctor about the possibility of getting it?

December 13, 2024 [Day 14]

Good Friday morning – a short update:

Building our own care team seems to be going well.  We learned this lesson decades ago when we needed to manage The Eldest Unmarried’s journey, so it’s not our first rodeo.

I got an excellent crash course in pain management Tuesday.  A Doc friend advised I was getting squirreled by the horrible cancer questions, and forgetting that The Droning Voice went to the ER because she was in a lot of pain.  I was very glad for that reminder from a friend.  Anyway, we are now being methodical about pain management while we wait.

We connected quite successfully with the biopsy specialist and the surgeon.  I asked around (the country) and we conclude these two doctors could get a job doing what they specialize in, in any big city in the USA.  They are really good at what they do.  Tulsa is lucky to have them.  That is a good reality check.  We have confidence in this team.

We booked a firm date, not for the biopsy but for the consultation that is required to take place before they can schedule the biopsy (you can see my face getting red).  Because he is on call at the hospital until December 20, he can’t see anyone until December 20.  We have an appointment on the morning of December 20.  I have to conclude that is the best we can do. 

Slowly I am getting used to this idea that things will not happen as soon as I want.  My inner 2-year-old does not approve.  But some good news: the surgeon (the possible procedure that could happen after the biopsy depending on what they find) called The Droning Voice and scheduled their consultation for first thing Monday morning (8am) – three days from now (what a breath of fresh air).  We will take that opportunity to work some kind of magic on him, and hope upon hope he will have a chance to talk to the biopsy doc and they will be totally coordinated (maybe even in cahoots) when it come time to get sorted.  Kind of a doctor-version of being the squeaky wheel, as they say in the South, “in a nice way.”  I did say it wasn’t our first rodeo.

We are receiving some profound comments about (what I would call the cutting-edge effects of) diet and nutrients on cancer of the pancreas.  My sense is, if The Droning Voice gets a cancer diagnosis, there may be some very strong directions we can go, especially if the surgeon can rearrange her innards so she can better eat and digest food again.

The near-term holds that she will push hard today and through the weekend.  A big performance tonight involving 18 students and 4 adults on 14 electronic keyboards-plus-piano-plus-pipe-organ, then a dress rehearsal Saturday morning involving 5 octaves of handbells for a different performance Saturday evening.  Sunday she is the Director of Music for the Presbyterian Church, where she has 11 players on 4 octaves of handbells for the Third Sunday in Advent (It’s hard to get her to stop moving big heavy things all over the place).  After church on Sunday afternoon, we can go home with all that push done.

That will be the point at which she can relax (“relax”).  She will sleep, then in the morning she will consult with the surgeon.  I’ll be with her the whole time.  I have urged her to take the week off and I think she will.  She needs a break.  Although I am already more retired than not, my employer has given me the week off too.  We have a strong circle of support ready to just honcho the rest of the music through the rest of the season.  We have even got January into Lent moving forward nicely.

However, we all need to work together next week to keep her from going down rabbit holes, to keep her from going off into the weeds, to keep her on the rails, to keep all squirrels away.  On my end I will manage her pain, I hope making it possible for her to indulge in all the mental diversions that her landscape and circle of friends can share.  Call her.  Text her.  Talk about crazy stuff.  Get her so riled up you can laugh about it with her later.  That sort of thing.  Mental diversion.

She’s reading this and she’s going to say “You’re not fooling anybody you know” but she will laugh and smile which is important.  We’ll try to get all the right foods down her (and none of the wrong ones) Jack.  And ramp up the Vitamin C, Charlie.

Anyway, that is to say, we have to own this stupid “holding pattern” and just get through it.  This is the script, now we have to play the roles.  In my dreams the biopsy gastroenterologist will meet with her Friday and put her on the slate as soon as possible, ideally the following week.  Then all the alarms might start again after we have the answer to the fundamental question, is it cancer Y/N and if Y then what stage.  Logic is good.  But of course it does not treat pain.

Or it could be a macabre “all clear” with an eerie silence.  We won’t know until it happens.  We continue to try to hold the “what ifs” at bay (OMG that is freaking hard).  Thanks for all your help and support in this.

December 10, 2024 [Day 11]

Waiting without knowing is the worst, I think.

Yesterday The Droning Voice and I went to consult with the oncologist at Oklahoma Cancer Specialists and Research Institute (OCSRI). I’m not going to say his name, because I don’t want to get him into trouble.  We suspect the problems we are experiencing are not the actual doctors’ faults, rather Ascension and Ascension St. John Jane Phillips Medical Center use an administration model that puts profit before patients.  We think the same holds true for Oklahoma Cancer Specialists and Research Institute (OCSRI), Primary Care Associates, and Utica Park Clinic.

I think (actually I know) some or most doctors put a lot of thought and effort into the difficult challenge of breaking bad news to their patients.  Yesterday was like that.  If you recall, last week there was a CT scan at Ascension St. John Jane Phillips Medical Center that found stuff, and we pushed on them until they scheduled the MRI they subsequently ordered in a timely manner (they originally scheduled it for December 23 [Day 24] but we got it done on December 3 [Day 4]).  After the MRI the ER doc expressed “cautious optimism” saying the mass on The Droning Voice’s pancreas “does not look like cancer looks.”

I am guessing the oncologist was not a part of that conversation.  Before yesterday’s oncology consultation, the oncologist got with the radiologist and reviewed The Droning Voice’s MRI together.  Contrary to what the Ascension St. John Jane Phillips Medical Center ER doctor told us, the oncologist and the radiologist concluded the MRI gives cause for concern.  Apparently yes, there is an obvious pancreatic cyst that is most likely not cancerous, but then behind it there is another, denser mass, they feel is “worrisome.”  They conclude The Droning Voice probably has something really bad.  The oncologist gets high marks for bedside manner, given this is a task I would not wish on anybody.

There is a special biopsy where they use an endoscope outfitted with ultrasound and surgical tooling, and move all that gear down into her stomach.  Her pancreas is just behind her stomach.  From there, using the ultrasound to see behind her stomach, they remote-control the tool kit to pierce the stomach, get into the growths, and grab the tissues they need to bring out and look at under a microscope.  This is not your standard doctor’s office procedure and will be performed as an outpatient surgery by a well-regarded specialist in Tulsa.

The biopsy will confirm malignancy with certainty and identify the staging, and the oncologist said he would also ask a different specialist to determine if further surgical exploration could benefit The Droning Voice.  Both orders got put in yesterday.  Today I was able to confirm both orders were received by the specialists in Tulsa, and I was given their phone numbers by the oncologist’s office, but they asked me to hold off for a day before leaning on them.  So now we wait, again.

A very good old friend told me last night, “Although we pathologists are mostly invisible, we are the ones who establish the firm diagnosis in cases like this.”  Pathologists are the ones with the microscopes.

If further exploration is recommended that will happen some time after the biopsy procedure.

If I have to be critical, and believe me I have been holding back, the report from the original CT scan from November 30 has a bunch of stuff on it that they never told us, and it’s pretty bad – all indications point to a high likelihood of malignancy based on the CT findings in The Droning Voice’s abdomen.  An expressed conclusion right there on the report says “highly concerning for primary pancreatic malignancy.”  In fact, they did not give us a copy of the CT scan report at that time – we had to get it on Day 10 from the oncologist by asking for a copy.  Although the ER did not show us the report, they did immediately order the MRI and refer us to the oncologist.

I got to see the CT report yesterday for the first time, but not the MRI report.  I can only imagine what it must say.  It is telling the first referral was not to a gastroenterologist but to an oncologist.

My point is, withholding this information from the patient has contributed directly to bogging down what seems like an otherwise obvious and straightforward process.

If there is a ray of hope, everyone agrees that pancreatitis also could look as described on the CT and MRI, and The Droning Voice’s guts have been so berserk for so long, she could definitely have a royal case of pancreatitis.  However, that’s a slim shot because of the way the growth is strangling her blood vessels – a hallmark of cancer – cancer or not, this could render it inoperable.

At this point it becomes the idle speculation of a non-objective life-partner (“I am not a doctor”) hoping-above hope it’s all a bad dream.  I have to remember that, like to a hammer everything is a nail, well, to an oncologist everything is cancer.  My fingers are still crossed.

A number of people have told us to not get too far ahead.  That is really hard, especially when Big Health makes us wait like this.

The biopsy will answer the question.  We have to wait for the biopsy.  Meanwhile The Droning Voice is getting no real solutions for her discomfort, but she takes medication for pain.  Eating continues to be dicey, so she’s low on energy and losing weight.  What we ask from those here on the ground with her is understanding and compassion.  At this time of year for a musician, it’s hard to just sit and rest but she needs as much of that as she can get.  Prayers?  Pray that everyone involved will have the confidence to know we move together with God, and please admit to yourselves and God that we/you realize the jigsaw puzzle is larger than we can understand, nor is it our right to understand it (like we desperately want to most of the time).  We are all fellow strugglers.  Those of you not here on the ground in the thick of it, please pray that she is surrounded by the kind of loving support she will need to get to the light at the end of the tunnel no matter what.

Another fair explanation is a standard-issue pancreatic cycst has grown to squeeze off the pancreatic ductwork that delivers digestive chemistry into her digestive tract, causing them to back up and irritate her pancreas instead.  Apparently this is not uncommon, and could be the cause of her symptoms.  So I for one want them to just get that damn thing off of there and see what happens.  A partial removal might-could get this done, even if they have to leave the part that’s tangled up in her blood vessels.

Ach, did I say I am not a doctor?  Now I’m just talking like a mechanic.

I’ll write next when we have a firm biopsy date so we will get a look at those cells.  We hope it will be a successful biopsy procedure, revealing cells still calm in the midst of surrounding turbulence.  We all know that particular woman is one of a kind !

December 3, 2024 [Day 4]

Last Saturday, The Droning Voice went into the ER at Ascension St. John Jane Phillips Medical Center to get relief from acute severe abdominal cramping / pain, including … when you put stuff in one end and it doesn’t come out the other end.  This was alarming.  We thought she must have a blockage and it could kill her.  This had been getting steadily worse for about 6 weeks.  Her next-to-useless primary care arrangement through Primary Care Associates, had kicked her to the curb by disenfranchising her to Utica Park Clinic upon adopting the MDVIP Concierge Care business model.  A frustrating call to Utica Park Clinic resulted in scheduling an appointment which has yet to happen.  The Droning Voice said they concluded she had nothing worse than a stomach ache and gave her an appointment for December 6 [Day 7].  Utica Park Clinic is a disorganized Hot Mess.

At some point we had to say “enough is enough,” and we took the day Saturday to go to Urgent Care.  Urgent Care immediately advised we go to the Emergency Room at Ascension St. John Jane Phillips Medical Center.

Most of the ER people were pretty good.  They did a CT scan, but were concerned to report finding what appeared to be a fist-sized mass in her abdomen, on her pancreas.  The report found the mass was “highly concerning for primary pancreatic malignancy.”   As you know, pancreatic cancer is really, really bad.  The ER told us pancreatic cancer is confirmed or ruled out by doing an abdominal MRI then a biopsy of the tissue of concern.  They ordered an MRI to be scheduled by Ascension scheduling, but they did not order the bioposy.  Rather, they referred The Droning Voice to Oklahoma Cancer Specialists and Research Institute (OCSRI) and told us the oncologist would have to order the biopsy.

This had a predictable effect on The Droning Voice and me.  We were able to break it to our daughter fairly well, but she did call me late that night having an anxiety attack which was pretty tough.

In their infinite wisdom, the ER discharge papers read, “Your condition does not seem serious now,” and Ascension scheduled the MRI for 24 days later, on December 23 [Day 24].  When I called Oklahoma Cancer Specialists and Research Institute (OCSRI), they said their first opening was in February, but before they scheduled a consultation with the oncologist, they first wanted to take a look at the MRI when it was completed.  Of course this meant they would not order the biopsy until after they had scheduled an office consultation which would only be scheduled after they had seen the completed MRI.

The Droning Voice and I could think only one thing.  She said, “I could be dead by then.”

Umm.  This was completely unacceptable for so many reasons.  I put on my special Patient Advocacy Badge (Mr. Somner spent many years as a professional patient advocate before getting put out to pasture), I grabbed my biggest hammer (that’s a figure of speech), and called them out successfully.  Short version is, we went back to the ER today.  They did the MRI today [Day 4, not Day 24 as originally scheduled] which they didn’t do Saturday (they told me they don’t do MRIs on weekends).  When Oklahoma Cancer Specialists and Research Institute (OCSRI) learned this, they gave her an appointment for this coming Monday December 6 [Day 7].  Notably they chose to do this before seeing the MRI.  Mission accomplished.  No blood was shed.  Sheesh.

After today’s MRI, the ER doctor reported to The Droning Voice that he was  “cautiously optimistic” and that “the MRI does not really look like pancreatic cancer usually looks.”  If you ask Google, the chances of pancreatic masses getting discovered coincidentally on CT scans being cancerous is 31%.  That’s another way of saying 2 out of 3 of these cases turn out to be benign.  So this is cautiously good news.  I am guessing the oncologist will order the biopsy and we will learn the answer with certainty, hopefully by the end of next week.

As you can imagine we are a mess here, although now “cautiously optimistic.”  We want to thank you for your thoughts and prayers.  We will keep you informed.

Now we have to get to rehearsal!  Because we are musicians.  And it is Christmas.

Note – Although this entry is dated November 30, I wrote it later and adjusted the publish date so it would come up in the right order in this written saga.  The other entries were posted when they were written.

Let me take a minute to lay some groundwork. I am recapping the details of what The Droning Voice is going through since they found a mass on her pancreas. I want to shed light on the systemic but avoidable shortcomings of current healthcare administration where she lives.

I’ve had long talks with a lot of doctors, and it is becoming obvious where the problem lies.  To some extent (not ready to put a metric on this) doctors are at the mercy of their administrators and other Corporate Overlords.  In a word, scheduling.  But also critical misinformation.  The result is a completely avoidable emotional and healthcare service roller-coaster where the lives of loved ones are in the balance.  I believe this is the result of management practices knowingly selected to place the success of the corporate entity and their principals above the well-being of patients.  I am guessing this is in direct conflict with their stated missions but I admit I am making assumptions about their stated missions.  So if you ask where my frustration lies, it is with (but not limited to) organizations serving (“serving”) northeast Oklahoma with these names:

• Ascension St. John Jane Phillips Medical Center
• Primary Care Associates (PCA)
• Utica Park Clinic (UPC)
• Oklahoma Cancer Specialists and Research Institute (OCSRI)
• Gastroenterology Specialists Inc (GSI)

Let me reiterate, my beef is not with doctors and nurses (except in one or two isolated cases).  My beef is with the organizations that write their paychecks and their principals.  I am going to call them, “Big Health.”

Welcome to Healthcare Hell.

 

Mr. Somner here. The Droning Voice took a prolonged break after learning there appeared to be no way to monetize her great idea of boringly reading old out-of-copyright books to help people go to sleep.

Oh well. It was a thought.

But now, we find ourselves at The Mayo Clinic in Rochester, Minnesota. The Droning Voice herself has fallen victim to both:

• A horrible situation unfolding in her abdomen
• Healthcare where she lives

In October she started feeling like crap. Specifically, she was experiencing acute and severe pain in her abdomen. After a while she called the doctor, who would not see her for far too long. Before that time was up, she chose to go to Urgent Care to get some more, well, urgent care.

In Urgent Care, they immediately sent her to the Emergency Room. In the ER they screened her for her obvious acute severe abdominal pain, and ordered a CT scan. The CT scan revealed a mass on her pancreas. Although they did not give us a copy of the CT report at the time, it read, “… highly concerning for primary pancreatic malignancy ….”

This is on the Saturday after Thanksgiving, November 30. Let’s call this [Day 1]. Her doctor’s appointment was yet to come on December 6 [Day 7]. Recall she had made that appointment a long time before, and went to Urgent Care out of desperation.

This is the start of absolute Healthcare Hell, which I am recapping here for the benefit of anyone interested in the details.