Progress of "Dark Days"

[papaof2]

I'm dealing with an unexpected diagnosis from my annual physical two weeks ago.  I always get a follow up message from the doctor about what he found but this year's message was "Schedule a follow up appointment" - not expected and almost never good.

I was back in the office eleven days later for additional blood and urine tests to verify his suspicion of myelofibrosis.  I had my tablet with me so I used the time (and their wi-fi) while waiting on the nurse with the needle.  A search for myelofibrosis brings up a number of pages, including several, such as rarediseases.org, that start with the bad news: "Myelofibrosis is a rare blood cancer".  Once you get past that sentence, you find that it can be slow in progression and that those at the lowest risk may have the disease for years and not know they have it until it's revealed by routine blood tests.  I seem to be in that category, as my primary risk factor is being over 65.  My internist's email after the second round of testing was "I want to see you again in 3 or 4 months" which certainly appears to put me in the low risk group.  The "getting tired early" that I've associated with getting old may be more appropriately assigned to the MF as it's one of the most common symptoms.

All of this is preface to saying that I may be very slow in finishing "Dark Days".  I have the story pretty well laid out through Chapter 40 but there are far too many things still unresolved at that point and my mind isn't very creative right now.  Maybe that will improve as I come to grips with my mortality - again - as this is round two with some type of cancer.  That first battle was seven years ago and this one is not related as the second group of tests included screening for that first cancer - did I mention that my doctor is *very* thorough?

[9idrr]

That's a hell of a Xmas gift. Keep us posted as much as makes you comfortable. I get the feeling there'll be plenty of prayers headed your way from member of this board.

[papaof2]

I get a LOT of support from my better half ;-) and I'll certainly accept support from others.

We'll be getting together with some long term friends for Christmas Eve. That's traditionally time for a family get-together at a favorite restaurant (from 7 to 14 people depending on who's in town) but those folks are staying home this year so we won't eat with them Christmas Eve or exchange token gifts on Christmas Day, complete with the current year's silly story from one kid-in-law with a lot of "left" and "right" - or maybe "Wright", depending on the story - as the gifts are passed back and forth a few dozen times. Maybe next year?

We've told the kids about the myelofibrosis - don't know if they've told the grandkids (high school and college ages). The kids are in different states, so one on a Zoom call and the other with a short in person visit because I thought they needed to see that I look and sound much the same as a year ago and that the good news in this is the doctor's "I want to see you in 3 or 4 months" instead of an immediate referral to a specialist.

I've done some research on meds for this and there is exactly ONE - monthly cost about $4000 unless your insurance covers it - some do (co-pay of $80 or so) but with "restrictions" and I don't yet have the details on that (company changed its retiree carrier this year and I don't yet have the new details - not the best week to be searching for these things either - maybe on the 28th?) I did find that there's a no-cost clinical trial at a university medical center about 150 miles from us but that would require 1) the med is appropriate for me and 2) I fit the patient profile they're looking for. I am doing my research in advance as much as possible and I already have 20MB or more of downloaded web pages and PDFs. When I'm referred to a specialist, he/she will probably consider me a PITA unless they're happy with an informed and curious patient ;-)

[bluefox2]

Hang in there Sir. I have fingers crossed and prayers said. Don't worry about the stories we will take whatever you write whenever you can. Your health is much more important than feeding the MOAR Hounds.

[papaof2]

Update on my condition. The new diagnosis is Monoclonal gammopathy of undetermined significance (MGUS).

MGUS and MF have similar symptoms and basic blood test results. Differentiating them takes more detailed tests which require more time and the doctor sent me the revised diagnosis today. 1 in 20 men over 70 have some level of MGUS.

There's not much difference from MF in long term prognosis as 1% of MGUS patients go on to some type of blood cancer. Worst case, this happens in 5 years.

Typical treatment is "wait and see" with frequent blood and urine tests - every 6 months or every year - but my doctor is planning 3 months initially with future testing as the tests indicate. Not sure if this is his usual thorough response to a test anomaly or if he sees more than he's willing to put in the MyChart communications. I'll know for certain during the next visit.

[papaof2]

Not getting much from the muse(s) on "Dark Days" but did get about 1500 words today of yet-another-direction. Interesting premise and I did save it for possible future expansion - or maybe inclusion as a chapter in something else. Creativity is always worth preserving.

[9idrr]

As you know, sir, we'll wait patiently.
Unless we feel it's necessary to put out a contract on a muse or two.

[papaof2]

The muses are scared enough by their exceptional sensitivity to human "flu" of any type - don't let them hear you say that or they might just go back to being totally silent and invisible as they were some months ago...

Oops! I hear one on the steps so time to close this and clear the screen.

[udwe]

Good luck with everything!

[papaof2]

I've gotten another chapter this week but so far, it's very short - less than 600 words. I think that's progress but it's certainly not in the same league as the thousand words a day the muses were doing in early 2020 :-(

Maybe more will come from them...

[papaof2]

Got another chapter - 1500 words in less than 24 hours. That's the best day since the gallbladder surgery back in November. No promises on how much my muse(s) will produce in the near future, but I am at least one step ahead of the postings ;-)

As usual, it won't be posted until it's been proofread and tweaked.

[9idrr]

Aha! A treat to which we can look forward!

[papaof2]

Well, I have the final chapter (but still missing a few chapters before I get there). No promises of another book or even followup notes/letters in the future - remember that 'Jack's War - Book 2' ended with them waiting for 7 feet of snow to melt.

On the other hand, 1300 words in 48 hours is very good considering how little inspiration I've had this year - and I had the laptop in hand just to tweak the "last chapter" notes...

Still moving slowly on the other chapters - maybe the last chapter as a Christmas present?

[papaof2]

I finished what I thought would be the final chapter of "Dark Days" - but my muse now has different plans...
She also gave me a good start on the next chapter.

Along the way, in the past week one or the other (both?) of my muses gifted me with 8000 words of a new story.
We'll see how that works out, as some of the 'sudden and in quantity' ideas also fizzle quickly :-(

[9idrr]

Many thanks to your muses.

[papaof2]

Old age sometimes leads to the recurrence of old problems. Did you have an aunt or whoever that always wanted to squeeze/pinch your cheek? I'm dealing with that feeling but it continues for hours/days. I've experienced this pain in the left side of my face off and on for a dozen years - still no good definition of the original cause (multiple opinions with no conclusive proof for any of them) but the remedy is physical therapy: dry needling and/or ICT (interferential current therapy), a more effective form of TENS. The ICT is so effective for me that I purchased a portable TENS/interferential unit several years ago (under $100 at the time) and I keep it, electrodes and the electrode gel handy.

I'm again experiencing that pain - this episode was probably triggered when someone put a cold hand on my cheek Sunday afternoon (cold and pressure being the usual triggers for my particular problem). It hasn't resolved in 48 hours so it needs more attention than acetaminophen. The batteries for the TENS/interferential unit are on charge for what will likely be several sessions today and as many succeeding days as needed. The chapter of "Dark Days" posted today may be the last one for a while as I'm not productive when dealing with this level of pain - even less productive if using narcotic pain meds which makes using the TENS/interferential unit the best available home therapy.

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A couple of online definitions:

A transcutaneous electrical nerve stimulation (TENS) unit is a device that sends small electrical currents to targeted body parts. These currents are used to relieve pain.

Interferential current therapy (ICT, or sometimes IFC) is the most common type of electrical muscle stimulation used to treat chronic pain resulting from surgery, injury or trauma. The end goal for using ICT as part of a physical therapy or rehab program is to relieve pain and help patients heal faster.

[papaof2]

I'm still writing - but slowly, and the chapters may be somewhat shorter. I keep trying to do everything I could do 30 years ago and my body just can't keep pace with my mind :-(
Yes, I'm 70+. No, I'm not OLD - although my body debates that with me almost daily...

My next physical is in January and I have a lot of complaints for the doctor, many of which I suspect he'll tell me are related to a three letter disease for which there is no good cure - O-L-D - and that things won't get better over time.

I have a couple of stories started which are more likely to be short stories. We shall see.

[papaof2]

It's shaping up to be a difficult winter. We had our first freeze warning last night so I was out to disconnect and drain hoses - maybe 3 minutes to roll out 100 feet of hose on a grassy slope, let it drain, then roll it back on the reel but that was long enough at just below 50F to trigger the pain in my face. Back inside for a balaclava for some face protection and then to the 50 feet of hose at the other hydrant.
Guess I should plan to be masked when working outside until April - that'll be OK as long as I don't go to the bank in a black balaclava ;-)

[papaof2]

One of my muses gifted me with 4 chapters and 4,000+ words of a new story in the past 36 hours but she's still several chapters overdue on "Dark Days" (which does need a better title).

The working title for the newest tale is "Going Dry" so you can speculate on that while I go get some acetaminophen for my aching hands. 4,000+ words at 5 characters/word plus spaces and punctuation - and backspacing and retyping - is well over 20,000 keystrokes, maybe 25,000? Perhaps there's a reason these old hands are hurting?

[papaof2]

Not getting much done on "Dark Days". Had an appointment with my PCP (Primary Care Physician, not a recreational drug) today about the the pain in my back/hip. Initial diagnosis is "pinched nerve" so I'm on prednisone for a week and have a stretch to do multiple times daily. If you don't know that stretch is a form of PT, you'd think I'm in a serious relationship with one of my knees ;-)

Any improvement? Not in an hour after the first dose. Maybe tomorrow; more likely 48-72 hours from now. Very good that my better half was available as my taxi driver today - I'd have had a very difficult time driving back home in traffic :-(

If you've never taken prednisone, think of the worst taste you've ever had in your mouth and add at least 20%. You need something pleasant but strong and long-lasting to get rid of the aftertaste - I prefer dark chocolate ;-)

The "datasheet" with the prednisone runs a couple thousand words - prednisone is used for almost everything and can have dozens of side effects - all unpleasant. I've never had any of those (yet?) so we'll see where I am in a week. 13 years ago, pain that started in a similar manner led to the discovery of a damaged disk and, after much unsuccessful PT and lots of Rx painkillers, ended in spinal surgery: L4-L5 fusion and 6 months of "getting over surgery" PT, including time using a walker and then a cane (haven't needed either since then). Wanna see a picture of the plates and screws in my back?

[papaof2]

Between the acetaminophen, the CBD and maybe a little help from the prednisone, I slept 7 unimterrupted hours ;-) Next dose of prednisone this hour and we'll see how tomorrow's wakeup is.

My muse is mostly ignoring "Dark Days" :-( However, I've had 22,000 words of inspiration this week on a new story - great, except for the wear and tear on my hands - but that many words could have more than completed "Dark Days".

I'll work with what she gives me.

[9idrr]

New stuff is always appreciated.

[papaof2]

Having insult added to injury today - listening to the yard guy move leaves while I'm downing Rx meds for the pain in my back :-( The leaf collection process was interrupted in November so he's got multiple months of leaves to move - not so bad when I could crunch the crisp leaves with the riding mower every couple of weeks and then use the bagger to collect and dump the shredded bits. Much worse when the leaves have built up from November to March. He did know what to expect as we had him stop by and walk the yard before he committed to doing the work while I'm not able to.

I did get to the MRI yesterday (no thanks to the Garmin GPS which had me 3/4 of a mile away from the location - and last night's "updated" GPS map still has that error) so I'll have the CD for the doctor to peruse when I'm back in that office next week. Unlike X-rays, MRI's are not easily to read on a small (15") screen so I didn't see anything obvious :-( I did make a copy of the CD for future reference and if the doctor shows me something specific, I can explore the display software on the CD and see if I can find that same image at a useful magnification.

What? You don't make copies of the electronic imaging they do on your body?

I have images of the X-rays of the hardware used in the L4-L5 fusion in my back some years ago and they get "Ow!" responses from most of the people who see them ;-)

[papaof2]

Why I use an ancient laptop.

Maximum shock (measured with hard drive in head-parked position and a 2-ms half-sine pulse):
Operating 143 G
Storage 163 G

I'm using an SSD so it's effectively ALWAYS parked. The laptop has done one somersault from the sofa and landed on the edges - upside down V on the case edge and display edge - and it's still working.

Weight (with 6-cell battery and CD drive) 2.27 kg (5 lb) (9 cell battery adds 0.4lb.)

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Saw the pain doctor today and got two steroid injections at L5-S1. The Si injection (just one) is two weeks out. I'm still dealing with the invasive inflamation and pain (20 minute icepack applications during the first 24 hours, then moist heat as needed) - I also have adequate Rx painkiller. The post-op care is several days of "no stressful activity" (that puts PT off until some time next week) and "don't lift anything over 10lbs" (mostly prohibits taking the garbage out and bringing the groceries in - some of the baggers manage 20lb+ bags).

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Why are these together here? I can manage to move the laptop from room to room just fine ;-) Maybe I'll get some inspiration from one of my muses when/if the steroid injections work?

[gipsy]

Hope you feel better soon