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.