Done Since 2023-11-26

[mdlbear]

So this has been my first week as a prostate cancer patient.. See this tag for details.. Up until this morning it seemed to be going as well as could be expected; now I'm not so sure. Details later at the tag. Maybe.

See current earworm; first verse.

Notes & links:1126Su  * litter boxen (E')
  & awake 5:30ish; S=3:38; must have spent some time in bed without mask;
    last save was 22:44
  * up 6:06; S=4:10; exercises (+k), Dutch
    (+k -> including fast and slow kegels, which I seem to have gotten the hang of --
     definiitely easier to feel lying down)
     = fast: strong, 1s; slow: gentler, 10s; do 6 sets of 10 of each exercise 
    @ Kegel Exercises for Men - Beginners Pelvic Floor Strengthening Guide - YouTube
      The 2 MOST IMPORTANT Kegel Exercises for Men - YouTube Michelle Kenway
      Kegels for Men - REAL TIME Daily Kegels WORKOUT - YouTube
      -> BUT not while using a foley catheter, apparently!  :P  screwed again
         see Pelvic Floor Muscle (Kegel) Exercises for Males
  @ How to Empty Your Bladder and Overcome Incomplete Bladder Emptying
    -> which I really wish someone had told me years ago when it started being a problem
    -> claims that incomplete emptying is a medical emergency.  YIKES!  (I'm screwed)
  @ 24-cell - Wikipedia
  * prep coffee for tomorrow am (may not have time, but if I do I don't want to waste it.)
  : 11am E' coming 
  * set alarms for tomorrow.  Will need to be ready to go by 7:30; start at 5:30.  5?
  x prep a fresh leg bag -> don't bother; flow test Wed.
  * throw some kind bars into the backpack
  * check, finish, print, sign forms for tomorrow
  x call about MyChart?  -> no; not linked, identical.
    -> the FredHuch login button goes to ecare.uwmedicine.org, so same as UW
  * laundry.  Should have started earlier -- there's a chance it won't finish tonight
    -> started 18:13; there's a load in the dryer
    -> kept the warm shirt out; if the sweatpants don't get done I can use the slacks
  ! suddenly very down.  Depressed?  Sad?  can I discern a difference?
  : laundry done except for one pair of socks that didn't get properly washed
    -> can't find the new baby washcloth(s?) that I put in; probably in my sweatpants
  : 21:41 evening chores done.  So that's good.
  : Had Ticia as a lap-cat for a little while.  So nice.
  % 00:02 awakened just before midnight by a squirt.  Cath didn't appear to be draining.
    But it is now, so maybe something got loosened up.
    -> very glad I had a pad on the bed.  And that I have more.
    -> put on depends as well.
    % but the bladder is, manifestly, draining, so I don't need an ER visit and can
      keep tomorrow's appointments, so maybe I can sleep for the rest of hte night

1127Mo
  * N will ping between 5 and 5:30; call if no response
  * up 5:30ish; S=
  % 200mg ibuprofen 06:07.  Hurts but can't find the bin with the lidocaine
    -> in house, of course.
  % 06:55 lidocaine
  * take a pen!
  % 07:22 acetaminophen 1g
  % stressed?  anxious?
  * 7:30 leave (45m) for 8:15 checkin at Montlake
  * 8:15 checkin for 8:30 urological oncologist (30m) UW med Montlake Urology Dr. Nyame
    *- exact diagnosis, grade, stage. ->  stage III, very high risk
    <- who should I be talking to about the spasms/constipation problems
    ~- Is surgery going to be needed -- I'm assuming yes, so if not, why not?
      very bad risk for surgery.  Radiation + hormone therapy
    ~- how long is the hospital stay likely to be (assume this depends on open vs lap.)
    ~- what kind of care will I need when I get home (explain about living arrangements)
    ~- cancer has invaded the bladder -- how will that affect treatment / recovery
       "There is superior extension of the prostate gland into the urinary bladder neck."
       -> not according to the PET scan [maybe it's pushing on it but not invading?]
    ~- is treatment likely to fix the urinary retention / constipation / incontinence
       -> self-cath;   if that doesn't work, TURP.  goal is to bridge the gap
          long-term foley is very bad (as I know well)
       -> 4x/day
    x- how likely is it that I'll be using a catheter (after I recover from the surgery)
    x- when can we start?
    -> Nurse (Jane) taught me to self-cath, which is a lot less painful than I expected
       -> 4x/day.  coudè catheter.  First cath: 9ish  -> next ~5pm?
       -> will set up home delivery.  Catheter should last a month.  Wash with soap and
          cold water, towel dry.
    -> referral to psych team at Fred Huch
  * 9:45 checkin for 10am radiation onc. (60m) UWMC Genitourinary Oncology Clinic Dr. Liao
    UWMC Montlake - 1959 NE Pacific Street - Surgery Pavillion 1st floor  
    * Homework:  Downloads/UWMC%20Prostate%20Packet%20with%20Directions%202.17.2022.pdf
    x- will radiation be necessary/desirable after surgery
    *- what kind of treatment schedule / duration?
       -> try several months of hormone therapy first
       -> typically 5 weeks. daily.  So that would be next spring
  * 12:30 Fred Hutch Finance registration
    Fred Hutch, Building 2, 4th Floor, 825 Eastlake Ave E, Seattle, WA
    ~- can't get into the wifi.  Chromium doesn't work either.
    -> however, there is power in the waiting area.
    -> checked in the lobby on the way out -- it's a network problem 
  * 12:45 checkin for 1pm medical oncologist  Dr. Rajitha Sunkara
    *- is chemo or hormone therapy going to be needed / useful?  -> yes
    *- after radiation / surgery??
       -> before
    *- what kind of treatment schedule / duration?  Hormone: testosterone deprivation
       -> ... so I'm going to be transitioning to non-binary.  Amusing.
       -> 1 injection (degarelix) 1 time; 2 daily pills after that.  Different action
          (prednisone only when I get the abiraterone, which needs ins. pre-approval)
          cut back on drinking :P -- need to research that
       -> They don't recommend more than 4000 units of D.  Start calcium supplements.
          Calcium carbonate is 40% calcium
    *- when do we start?
       -> today
  * 17:52 self-catheterization - back bathroom.  Worked well, modulo not having brought a
    ziplok to hold the device, so I used its original packaging.  Barely enough space on
    the vanity in front of the sink, and I'm not sure how it's going to work in the Lair
    % a few minutes' warning, though the urgency escalated quickly toward the end.
  * cancel Wednesday's cath change / flow test appointment
  * cancel existing D3 subscription
  @ The Washington Post is very worried that American women don't want to marry Trump
    supporters  OP: Opinion | Young Americans aren’t marrying. Politics helps explain why. 
  % 21:29 acetaminophen -- heading out to the Lair, noticed that the injection site has
    started to hurt.  the acetainophen should start working around 10-10:15.  Which might
    be a good time to do the self-cath if I last that long.  -> urinated a bit ~22:16
    22:36 cath (previous+4.5h) -> didn't get much out; of course it started part empty.
  % woke up very cold around 3?  Put on the scooter cape as a blanket
  % 21:29 heading out to the Lair.  Notice that the injection site has started to hurt.
    Taking acetaminophen.
  x maybe call Norco to order supply of replacement bags; esp. leg bags

1128Tu
  * up 5:30ish; S=5:09, BP=119/71, P=75;  exercises, Dutch
    (exercises incl. 3 sit-ups, bed squats, kegels -- not fully integrated into a routine)
  % injection site still hurting.  Should take acetaminophen
  % 06:53 acetaminophen 500mg
  $ C $3 monthly to Wikipedia via AX
  @ "High" and "low" pitch are not universal; sometimes there are crocodiles (andrewducker)
  * walk:  W. to end of block.  Some frost on the sidewalk, so do it later next time
  @ Making God - Emily F. Gorcenski
  * 10am - 11:30 Memory Keepers grief support group
  : robo-call from Cigna - prescription for abiraterone approved. 
    -> 15:07 call ExpressScripts -> transferred to Cigna -> not mail-order; call took 27
       minutes and was very frustrating due to voice recognition failure, transfers,
       agents' accents, and maybe some incompetance at reading the history.
    -> apparently I need to pick it up at the FredHuch pharmacy.  co-pay $175 - not bad
  : call from (scheduler)Adam B., to set up an appointment with Nicole Bates in the
    FredHutch psychiatry department
  @ Review: I Tried the Enby, a New Gender-Free Sex Toy | Allure Enby 2
  @ Are reusable catheters safe? Study provides an answer TL;DR: yes
    Clean intermittent catheterization: Single use vs. reuse - PMC
  % 17:27 sleepy
  % 19:47 injection site still hurting somewhat
  @ post PC: Transitions
  @ Anti-Androgens: Uses, Types, and Side Effects
    " For people who identify as nonbinary, taking anti-androgens alone can help reduce
      masculine physical traits "

1129We  * litter boxen
  * up 7ish; S=7:42, BP=119/76, P=73; exercises
  % injection site hurts p=4 when pressed, but not otherwise
  * bring a bottle of fluticasone out to the house.  not like I don't have enough...
  % Integrative Medicine | Fred Hutchinson Cancer Center  * schedule zoom call
  % 10:38 call from Fred social worker (based on my depressed-sounding answers on the
    Supportive Cancer Care Questionnaire (SCCQ)) to set up initial appointment --
    * schedulers will reach out
  @ Study finds no “smoking gun” for mental health issues due to Internet usage | Ars
  : driver's license with updated address arrived
  * 3pm leave for 3:30 appointment at Fred Huch
    -> getting there via Aurora worked pretty well.  Getting back, not so much.  take 5
    -> they only gave me one of the two required shots Monday.  Grump.  But here I am.
    %  back started hurting while getting up from the chair after getting the shot
    -> also picked up the abiraterone.  $124 co-pay
       -> 1 hour before or 2 h after a meal.  Coffee is okay.
       -> Prednisone should be taken _with_ food.
       -> have to use MyChart to requst mail order every month.  :P
       -> bloodwork every two weeks for next 2-3 months
  % 17:56 400mg ibuprofen mostly for back pain.
  : Molly is down to 40-something miles, so will have to be charged tomorrow
  x 8:20 leave for 8:45 checkin for 9am catheter change - McMurray Bldg.

1130Th
  % awake 4ish;
  * up 6:30ish; S=7:27; exercises
  : turns out there was already a fresh bag of coffee in the lair: Fidalgo org. French
  * 8:15 pharmacy run -- MUST be finished before 10am -- for k and N
  @ Henry Kissinger, War Criminal, Dead at 100
  * 11:30 go charge Molly at Northgate ->
    Northgate was not only full, it had people waiting.  Now behind QFC at Northgate+11th
  * 12:45 leave for 1:20 dentist - cleaning
  * SL: RS: coffee for RE, depends, appelsap
  % observation:  cancer-related crap (especially self-cath) has taken up a ridiculously
    large fraction of the day.  Add dentistry and driving, and...
  *  message Dr Nyame's tean about getting smaller catheters, and a supply of disposable
  % 18:46 headache.  -> 18:53 400mg ibuprofen.  Could be the tooth, but may be a
    side-effect of the Degarelix.
  $ C $100 via AX to Human Rights Watch -- 5Xmatch
  @ Prednisone | Carla Ulbrich hilarious; may be less so in a few days
  * update card info for EVgo.  It also didn't like my AX -> apparently it's just an app;
    there doesn't seem to be a way to log in on the website.  PPPHHHHHHPHPPT
  * order tums and toweletts from $A.  Overnight delivery.
  * out to lair 9:50ish
  * take BP in Lair (see "headache" above) -> BP=139/83 P=77 -- so not worrisome
  % 22:54 very drifty.  Out of it.
  % I have not been hydrating enough.  No idea how to keep track of that.

1201Fr  * litter boxen (E')
  & awake 4:45ish; S=5:27; wet; 45m of cat-on-chest + bed exercises (+fast, slow kegels)
    % Damn - it was a nice dream up to tha6t point
    % mouth feels pretty dry.  Groin felt wet - wash, dry, and powder,
    % 05:40 back to bed, try to sleep
  * up 7ish; S=7:40, BP=110/68, P=65; shower before cath
    % 8:30ish drugs
      -> must be more careful about time, because abiraterone needs to be 1h before food
    % 09:58 fiber.  Could have had it half an hour ago.  see above
    % note that there was water in the humidifier when I went to top it off
  @ World AIDS Day - Wikipedia
  : my prednisone might be here as early as tomorrow or as late as 12/6
    Finding this out required three phone calls.  The first call, to express scripts
    contact number, tried to sell me a "free" medical alert device. lifeprotect247.com
    Getting this information out of the ES website was difficult.  % I am not happy.
    -> I should have looked at "order history"; the most recent order was for next refill
    -> Should have had it sent to either the FredHuch pharm. or Bartells
    https://tools.usps.com/go/TrackConfirmAction_input?origTrackNum=9374829817120592553242
  % left eye inner corner itching.  Felt a bit like something solid.  -> occusoft wipe
  * walk, with m to MonkeyGrinds coffeehouse.  Mexican mocha, blueberry scone. back ~1300
  * pack: the coffee in the white bag
  : on island 17:59 so 3 hours, having gone up 99 and (barely) missed a boat
  % 23:40 awake after falling asleep in the recliner.  Should cath and bed

1202Sa
  & awake 4:50ish; S=4:45; bed exercises + kegels,
    % 6am debating whether to go back to sleep or get up.  Also, what to do for bladder
    -> went back to bed
  * up 8:09; S=5:30, BP=120/74, P=61; shower
  % try using a pad in a pair of my usual boxer shorts.  Doesn't fit all that well but
    should be usable; pads will take up less space in my backpack
  * email Al about recent cancer news, genetic testing - sent 13:17
  * */1    CPAP:  change paper filter, wash tubs.  maybe nosepiece, since we have plenty
  * sorting with g": boxes in the LR and garage
  * email Al about recent cancer news, genetic testing - sent 13:17
  % 15:56 400mg ibuprofen for back pain - R QL.  heating pad on back BR recliner
  * ~16:15 grocery shopping expedition
  @ Hormone Therapy for Prostate Cancer | American Cancer Society
  % nasal congestion all day yesterday and today.
  * laundry
  * I had a bag of Brussels sprouts, but I eated them.
  : the prednisone arrived sometime in the early afternoon
  % 22:23 asleep at my LR desk chair this time
  % 11:58 400mg ibuprofen
  % getting to bed ~midnight... 00:49 :P

Squick warning. Not as bad as I thought expected, but unpleasant. In the course of 24 hours I appear to have gone from nearly unable to urinate, to completely unable to stop. I am not a happy bear. See today's music.

Comments

[freyjaw]

That sucks. I'm sorry you're going through that.

[mdlbear]

Thanks. About the only thing one can say about it is that it beats the alternative.

[andyheninger]

Yikes! I hope things stabilize and improve for you. F Cancer.

-- Andy

[mdlbear]

Thanks!

[redsixwing]

Cheering very much for you.

Not, on the other hand, cheering for this WaPo article.

I'm very fond of "Uncle John's Band," but that does seem like an interesting earworm for the situation.

[mdlbear]

Well, the first days are the hardest days
Don't you worry any more
'Cause when life looks like easy street
There is danger at your door...

... seemed appropriate