Medical Info
Records showing the medical encounters and treatments going on behind the scenes of the more public shared updates, 2021-2022
By Linda L Hoeschler
June 2018 and continuing: Reports of substantial fatigue and dizziness, with medical interventions of bi-weekly testosterone shots (started spring 2015) and SSRI. After initial energy improvement, lethargy and need for naps continue. JGH decides to retire slowly.
31 Mar 2021: Office visit to PCP Dr J. Bryan Warren for ongoing fatigue with “no obvious etiology.” Physical exam unremarkable. Testosterone shots to continue for hypogonadism.
28 Apr: Visit Dr Bryan Warren (2 days before he retires). JGH reports feeling better on new anti-depressant (Venlafaxine for past month vs Lexapro). Renew Flomax prescription. Had not seen benefit of testosterone replacement but advised to continue with shots.
21 May: JGH is feeling sick (myalgia, warm and dizzy), so Warren orders blood tests. Neutrophils, Monocyctes and Leucocytes are High and above range. Due to elevated WBC Warren prescribes Doxycycline (2 weeks) for possible Lyme disease.
June 3: First meeting with new PCP, Dr. Kelly Frisch. JGH reports more energy after doxycycline course, noting reports of fatigue for several years, increasing substantially over the past 4-6 weeks. Frisch orders tick panel and several other tests (tick and other parasite tests are all negative). That evening I email Dr. Frisch that Jack is very lightheaded and unstable (grandson’s birthday party); she orders MRI of brain.
June 4: Jack has CAT Scan (loses a hearing aid in the process!). (No abnormalities of brain seen.)
June 5: Jack passes out (no warning) and collapses in the kitchen. Falls backward and strains his back. Able to get up by himself. Contact Dr Warren (Frisch out of town) who says his bloodwork is “Harvard” but recommends he discontinue Effexor.
June 7: Dr Frisch orders a PSA test and uranalysis (2 H markers). Frisch calls June 9 with news of elevated PSA (36) and referral to Dr Lukasewycz, urologist. She suggests Jack get an Apple watch to track his heart (we both get one).
June 16: JGH and LLH meet with Lukasewycz who schedules biopsy for Monday June 21. That evening Jack has severe leg pains and several dizzy spells, particularly while walking the dog, necessitating his sitting down, then kneeling on ground and resting head on grass. He emails Dr Frisch about these episodes, also reporting that his heart is as high as 203bpm for past 2 evenings; Frisch sends him to Regions ER for monitoring. At about 2:30AM he’s admitted to 6030 ward for observation.
June 17: JGH and LLH meet in the hospital with Dr. Marco Guerrero, cardiac surgeon. He goes through Jack’s diagnosed heart conditions (PAF [Paroxysmal Atrial fibrillation], SVT [Supraventricular Tachycardia] and Sick Sinus Syndrome) and possible courses of treatment (from pacemaker implant to cardioversions to ablations). We choose the (more conservative) pacemaker (PPM) insertion, which along with beta blocker (Metoprolol) and Eliquis (blood thinner) should provide a floor and ceiling for his BPM, and a monitor for heart behavior. Guerrero schedules the surgery for the next morning.
June 18: Jack has Medtronic 2-lead pacemaker (PPM) implanted. Had a miserable night with great urgency (had been hydrated for surgery) yet he’s a fall potential. Many accidents and sheet changes. Starts Metoprolol/Toprol XL (25mg daily); cannot start Eliquis until after biopsy on Monday. Discharged about 6pm from Regions Hospital.
June 21: Jack has prostate biopsy (Lukasewycz).
June 24: Meet with Frisch who doubles Metoprolol/Toprol XL dosage to 50mg daily (JGH takes double dose through July 11; July 12-15 takes one dose, due to LLH mistake in setting up pills. On July 15 APRN Menke reduces Toprol to 25mg daily due to ongoing fatigue.) JGH extremely exhausted and unsteady. More lab tests; JGH starts taking Eliquis 2x daily instead of 81mg aspirin.
June 25: Dr Lukasewycz, oncologist, reports at our appointment on biopsy which shows cancer in 11 of 12 core samples. He says we’re now in hands of oncologist; we request Dr. Jahagirdar (LLH oncologist). Urologist also orders CAT scan and Nuclear bone scan. LLH talks to heart center about Jack’s ongoing heart discomfort.
June 28: CAT scan performed. Dr Jahagirdar reviews scan and calls at home to meet with us the next day.
June 29: Dr. Jahagirdar lays out treatment protocol for advanced prostate cancer (in bones and lymph nodes, but not in lungs or liver). Gleason score of 10 (top). Jahagirdar estimates JGH has had the prostate cancer for longer than 10 years (in response to question).
June 30: JGH has Nuclear Medicine Whole Body Bone Scan (CT) to assess cancer spread; metastases found in pubic bone, ribs, sternum, vertebrae, pelvis and femur.
July 1: Jack meets with physical therapist Sarah W. Sarnowski for gait assessment and strengthening program.
July 2: Jack has Electric Cardioversion performed at Regions Heart Center. He converts out of Afib but still experiences irregular heartbeat, fatigue and discomfort.
July 6: Heart Center asks for another transmission from the pacemaker. Despite Apple Watch readings of Afib, there is none recorded by PPM. Moreover, no alarming ventricular issues are present, according to HC. JGH begins to feel better.
July 8: JGH has Dexascan to determine bone loss of hips and back and whether or not a bone-stabilizing infusion is warranted. Results appear good: no evidence of osteopenia/osteoporosis (although Osteopenia is added to his chart). Oncology prescriptions for Xtandi/Enzalutamide (4 caps daily) and Orgovyx/Relugolix (3 pills first day; 1 pill daily after) arrive and are taken.
July 15: Appointments at Regions Heart Center. JGH has PPM hardware check by Kelly Mavetz, RN, followed by ECG, then a long consult with Trisha Menke, APRN. Basically, PPM hardware is working fine, with aggressive top setting of PPM at 140 BPM so Jack can exercise hard (low is set to 60; we want to keep heart beating as low as possible). PPM also paces 95% of Jack’s ventricular beats (high trigger but intentional). PPM has shown no atrial fibrillation since Cardioversion on July 2; however, PPM is only set to alarm alert if Afib lasts 30 minutes or more (JGH Apple watch shows intermittent Afib. However, PPM does NOT alert Heart Clinic to possible problems.) Reduce Toprol to 25mg daily to reduce fatigue (this Beta Blocker lowers both blood pressure and heartbeat). Counseling points: if JGH goes into Afib with BPM >120, double Toprol and call HP 651-254-4887. Watch for fatigue and having to rest on stairs or on walks (possible heart attack). Wait another week before lifting left arm (PPM site).
About 6:40 PM JGH is talking to a friend in our garden, when he experiences a 15 minute dizzy episode. Afraid of falling, he sits down on bench; does not lose consciousness but episode is similar to pre-PPM implant episodes. On advice of Dr Frisch we go to Regions ER where all checks out OK (including a PPM download).
July 16: After 12-hour fasting blood tests (all fine with PSA going down, but for high Creatinine and low GFR), we meet with our oncologist, Dr Jahagirdar. Jack is still feeling lightheaded so Jahagirdar stops Xtandi (prevents prostate cancer from binding with receptors) for a month, and tapers Jack off beta blocker, Toprol. He will alert Guerrero to see if he wants to change pacemaker settings, particularly raising the low end where Jack’s heart seems to want to stay. Guerrero calls that evening to set consultative appointment with us July 28 at 7:30AM; Jahagirdar calls later to see how Jack’s feeling. What a team!
July 18: Jack very dizzy throughout morning and early afternoon, with initial BP of 134/89 and BPM of 77, although bp and BPM settle down to. Walks well in the evening---the first time able to keep up with me in several months.
July 19: Dr Kelly Frisch calls and we discuss ways to reach heart experts more quickly as well as to learn how to react to different situations. She is concerned about dizzy episode yesterday and agrees lower parameter of PPM needs to be raised from 60.
July 20: Jahagirdar calls to explain not taking Xtandi off list of meds (1 month hiatus) to eliminate need to appeal to Medicare BCBS. He is concerned about Sept canoe trip for JGH. Jack has dizzy spell as passenger in car with Fritz.
July 28: 75 minute electrophys consult with Guerrero. Two major issues are: 1-ongoing low blood pressure and 2-arrhythmia (heart beats too fast). Since PPM ensures heart doesn’t go too slow, changes device settings to high of 133 bpm (from 140) to track more rapid beating episodes. Treatment options: anti-arrhythmics which modify electric properties of heart (Amiodarone is best but can be toxic to organs or Multaq, a spin-off, is less effective) or ablations (AV node [40 min procedure] and/or SVT [full anesthesia]). We think meds not good choice due to strong cancer drugs, plus their possible organ-damage side effects. We will meet with Guerrero in a week to discuss surgical options/choices. Afternoon appointment with PCP, Kelly Frisch. Guerrero has updated her, and after a Q and A, she offers her current outlook: with ablations and cancer meds Jack will continue to feel better and has some good years ahead. With relief we celebrate at dinner with KBH.
Aug 1: After dinner on our deck JGH experiences right foot neuropathy for 1 minute carrying a tray of dishes up the stairs and into the kitchen. Right foot toes dropped and tended to scuff.
Aug 2: Mid-afternoon Jack is cleaning up garden and has an extended (several minutes) dizzy spell. 95 BPM a bit after.
Aug 4: 149 BPM while brushing teeth. Meet with Guerrero and decide to do Afib and SVT ablation, scheduled for Aug 12.
Aug 7 and 8: Dizzy spells with high pulse rate. These spells continue until surgery on Aug 12.
Aug 12: Jack admitted at 6AM at Regions for ablation procedure:
-Successful AVNRT ablation;
-Successful CTI ablation line with bidirectional block
-Successful PVI isolation procedure
Aug 13: Jack leaves hospital at 11:30am and reports feeling “much better.” This sense of “back to normal” continues throughout the weekend and beyond. Marked energy increase and good appearance.
Aug 17: Follow-up with Heart Clinic after Aug 16 pacemaker download. PPM shows occasional AF and AF after .5 hour alert, plus some tachycardia (racing heart). Clinic not concerned re these events since takes 12 weeks for heart to heal from surgery. RN Trish Menke well pleased that Jack never felt “body-slammed” by the surgery, doesn’t have swollen limbs and is feeling well and energetic.
Visit lab for various blood tests before meeting with Jahagirdar and Oncology. Told to keep weight down and build muscles since meds block male hormones. Call from doctor several hours later that PSA has dropped to 5.7 from 44.7 (June 3)! Relugolix started on July 8 or 5 ½ weeks prior; drug was FDA approved in December 2020.
Aug 18: Early evening (high 80’s) Jack is weeding in garden when he feels sweaty, checks his watch and notes rapid heartbeat. This condition continues through late night and early morning, with a few Afib episodes.
Aug 24: Meet with Marco Guerrero who is well pleased with Jack’s results so far. Notes that if JGH has similar (rapid heartbeat) episodes 3 months out, then we have a problem; but at this point it’s not significant as the heart heals from surgery. (Next step would be AV Node ablation when PPM would take over all of the heart’s primary electrical functions.)
Aug 30: Generally feeling good, although LLH reports JGH has pale coloring. In the evening has several bouts with facial cool sweats plus fatigue. EKG app looks OK as is blood pressure and pulse. No fever.
Sep 17: Meet with Jahagirdar. Labs show PSA has dropped to 4.2 and hemoglobin remains good at 13, especially since Relugolix targets the pituitary gland to suppress GnRH (latter stimulates testicles to make testosterone and testosterone raises iron levels). When PSA starts to rise, JGH will re-start Enzalutamide, an androgen receptacle inhibitor (changing the keylocks!). Next would be chemotherapy and quality vs quantity decisions. Jahagirdar OK’s re-starting on Flomax/Tamulosin.
Sep 18: Dr Frisch physical and Jack looks good. She counsels to watch his blood pressure since Flomax (which Jahagirdar okayed to restart) can raise blood pressure. Keep up with PT and add a trainer. See Frisch in 6 months (March). Jack gets flu shot.
Sep 19: JGH is quite dizzy and feeling faint while standing at kitchen counter. We decide to discontinue Flomax since dizziness etc among its side-effects.
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Sep 28: Follow-up with Guerrero. He notes: normal pacemaker function, few afib incidents, and no arrhythmias since August 19. Programmed ATP (anti-tachycardia pacing) re5 for SVT as of today. Mid-Dec follow-up scheduled, Dec 16.
Oct 12: Jack observes that he is getting more and more hot flashes. At night he has to change beds and remove his pajamas to cope with the sweats. (Side effect of Orgovyx? Probably, says Jahagirdar on Oct 19)
Oct 19: Jack’s Oct 18 blood draw is all good, but for the increase in Jack’s PSA which has risen from 4.2 to 5.6 over the past month. He restarts Enzalutamide (Xtandi) an androgen receptacle inhibitor in addition to continuing Orgovyx.
Nov 8: Several hours of unstable heart and concomitant fatigue in early evening. Cannot get measure on AppleWatch, but eventually stabilizes when lying down in bed.
Nov 16: Meet with Jahagirdar. PSA is 5.6 and doctor believes it will drop further since Jack is on two prostate cancer drugs. Recommends that Jack take all 4 Xtandi pills in the AM since it is a long-acting drug. Also suggests that Jack regularly use his CPAP machine with humidifier and monitor his O2 levels. (This may also help Jack’s recently-developed restless legs which are making sleep difficult.) We discussed getting Covid Vaccine booster (have had 3 shots so far) and will probably wait until February (6 months after the last shot).
Dec 13: LLH and JGH notice some mental diminishment (loss of short term memory) and desire to sleep more (10-12 hours per night). However, JGH remains interested in reading, learning, participating in civic and choral groups, and attending concerts. Could memory issues be Xtandi side effect? Need to check whether or not JGH should continue with Eliquis and Atorvastin since Xtandi appears (on drug checker) to reduce the effectiveness of these heart meds. JGH has also purchased soy/vitamin supplements which we’ll check with doctors.
Dec 20 & 21: JGH has usual labs on the 20th, with disquieting result of 2-pt increase in his PSA to 7.6. We meet with Jahagirdar on the 21st who wants to do an AR-V7 blood test to determine whether or not JGH has a blood mutation that causes resistance to Enzalutamide (Jack’s testosterone levels are stable). This Enzalutamide resistance would be bad news, meaning Jack’s pills are no longer working, and we are moving to considering chemotherapy and trials.
We also discuss Jack’s fatigue and back weakness, apparently due to elimination of his testosterone. Short-term memory issues are by-product of Enzalutamide, Bal also explains. Bal wants Jack to discontinue the NOW soy/vitamin supplements.
Jan 4-5: After a delightful weekend of cross-country skiing with the grandsons and daughter Kristen (Dec 31-Jan 2) at Gem Lake, Jack works all day Monday January 3 with his law-practice hand-off, followed by dinner with friends.
Jan 4, he goes to Oncology/Lab for blood draw for AR-V7 genetic test (lab tech announces he’s sick and leaves). That afternoon Jack feels weak and sluggish; his gait is a wobbly shuffle, to the point that LLH insists he use a walker. He only wants to sleep and runs a low grade fever. EKG (Apple watch) is normal sinus rhythm; oximeter measures 96% and fever is still low. Legs are swollen, esp noticeable at top of socks. Has difficulty changing his clothes, especially lifting his legs and putting his feet into Depends and pants. LLH is worried but declines to write doctor at 9 pm lest we be directed to ER.
That night Jack wears CPAP and gets up each hour to urinate; his Depends is extremely heavy and unusually odorific in the morningl.
On the morning of Jan 5 Jack’s fever is 101.7, then 99.7 after a shower. He seems a bit less wobbly, mildly better, but wants to stay in bed. Rapid Covid test is negative. I email Dr Jaghirdar’s nurse, Cindy Olive, who sets up a 10am appointment for JGH in Oncology clinic with Nurse-Practitioner, Ann Barlow. Barlow orders many blood and urine tests, and deduces that Jack has prostatitis. (JGH’s PSA is 7.2, .4 lower than 2 weeks before.)
Barlow orders Cipro 500mg pills to be taken 2x day for at least a week.
Jahagirdar calls about 5:30pm to check on JGH and urges him to get up and walk to reduce stroke risk. JGH complies, but is still fatigued and has difficulty lifting his legs to get dressed.
Jan 6 and on--Thursday morning, Jan 6, Nurse Cindy Olive calls from Jaghirdar’s office to check on Jack (who reports feeling a bit better). But on Jan 7 Jack feels worse and spends most of the day in bed. Several times Jack remarks that he feels like he’s dying.
Jan 10/11: I write Dr Frisch and request that she order tests before our appointment on the 13th
In order to track the Cipro efficacy re prostatitis. She does and also calls LLH, offering her view that Jack’s PSA rise is consistent with prostatitis. Fingers crossed that this prostate infection, not a genetic mutation, is the cause of Jack’s PSA rise. A ray of hope!
Jan 12/13: Blood and urine tests/cultures show that Cipro is slowly beating back the prostatitis. On Jan 13 Jack says he is finally feeling somewhat better. We meet with Dr Frisch where Jack reports that he has been having “vision mosaics” every now and then and for some time (news to LLH). Kelly spends much time with us and suggests we meet quarterly so she can keep up to date (as appropriate for our primary doctor!). We are relieved and again recognize what a balanced and whole-person view she offers. Jack is to stay on Cipro for 6 weeks.
Jan 25/26: Oncology nurse calls 1/25 to report the good news that Jack’s AR-V7 test was negative, so he can continue with the Orgovyxx and Enzaludamide for the time being. JGH has labs done to test prostatitis status, blood work and PSA in preparation for meeting with Jahagirdar on the 26th. Unfortunately, his PSA has more than doubled since from 7.2 Jan 5 to 17.1 in 20 days.
We meet Jahagirdar (and resident Dr. O’Leary) on the 26th; Bal thinks that the PSA elevation is due partially to the prostatitis (known to spike PSA), but also due to the cancer. We conclude the Enzaludamide is probably not too effective, since Jack’s PSA went down over several months with the Orgovyxx but has crept up since he re-started Enzaludamide mid-October. Jack is to continue to treat the prostatitis with Cipro for the full 6 weeks (through February 15), then meet with Bal on February 23. If Jack’s PSA continues to have gone up (labs Feb 22) Jack will switch to Abiraterone. JGH will also have a bone scan, CT scan, as well as an infusion to strengthen his bones.
Jan 29: Jack notes, with delight, that his urgency is diminishing, so he is off Depends (for now!). Moreover, he only gets up a couple of times during the night. (LLH now thinks he had prostatitis for months before it became acute and was detected.) Short lived victory.
Feb 3: Jack has a dizzy spell in the kitchen and looks gray; he has had several dizzy spells throughout, but now they seem to be more regular (often accompanied by light sweats). LLH sets up afternoon visit with Dr Kelly Frisch who checks him for stroke. She notes his low blood pressure (100/66; pulse 80) which drops to 72/49 when he stands. She is concerned about his weight loss (intentional), low albumin (poor nutrition) and high creatinine (suggests kidney damage) results of last week. She orders more bloodwork, and advocates for Jack’s eating 3 regular meals, increasing salt intake and drinking even more liquids throughout the day. She discontinues his taking Cipro and will talk to a urologist for further guidance.
Feb 4-5: Dr Frisch contacts us early afternoon to state that Feb 3 blood tests indicate continuing decline in kidney function; she orders an ultrasound that day to determine whether or not it is Cipro causing interstitial nephritis or a kidney blockage. Jack undergoes ultrasound then comes to his 80th birthday party! On Saturday the 5th Frisch calls to report that the radiologist found right kidney blockage. Jack is to have further blood tests on Monday at Regions; depending on results he may have a CT scan, microsurgery or kidney removal (latter unlikely at his age).
Feb 6: Morning blood tests show that Jack’s Creatinine has dropped, but still above normal range of .73-1.18 (1.7; same as on Jan 25 and lower than 2.1 on Feb 3). Kelly Frisch is pleased that Jack’s not needing emergency treatment, and brokers meeting with urologist Lukasewycz on Feb 9 to discuss options.
Feb 9: Urologist Lukasewycz reviews Jack’s Feb 4 ultrasound which shows swelling of right kidney, meaning urine is backing up. He notes that as creatinine levels double, kidney function halves. He doesn’t think Jack had prostatitis and is concerned that cancer is causing kidney blockage. Today’s urine samples are still somewhat abnormal (though higher than normal red blood cells), but not alarming; Jack retaining little urine after emptying bladder, good sign. Urologist orders more blood tests for Monday, Feb 13, to measure kidney function (creatinine). Performs a cystoscopy in office and notes that Jack’s urethra canal (up to kidney) and bladder interior looked better than expected, with no obvious obstructions. We are probably looking at having a stent inserted, either an internally draining one or one inserted through the back draining into an external bag.
Feb 10: Jack’s blood pressure (3x reading pre-breakfast) is 126/80, the first time in normal range since last week.
Feb 14: Jack has blood tests in the morning: good news/bad news. Good: Creatinine has declined to 1.41, though not in normal range (73-1.18). BUN (blood, urea, nitrogen) is in normal range at 23. Bad: High levels of creatinine (sign of kidney failure). PSA is up to 19.2 (from 17.1 Jan 25 and 7.2 Jan 5). Sigh.
Feb 15: Balkrishna Jahagirdar writes a comforting email (notes Delta of PSA rise is not too great) and talks to us for 15 minutes at home. He outlines several possible diagnostic tests and treatments going forward, including new drugs and trials. We repeat measurements next week and meet with him in 6 days. Concierge-type care!
Feb 16: Jack has non-contrast CT scan of his kidneys and surrounding areas, comparing changes to 6/28/21 scan. Takeaways: the disease has progressed, and previously identified tumors are all larger. Right kidney and ureter are swollen due to growth of a prior tumor, now obstructing the kidney. Left kidney fine. New cyst on liver; metastatic growth on lower skeleton T12, L3, pubic bone, both hip sockets (sclerotic metastases). Substantial tumor growth of abdominal lymphatic tumors (retroperitoneal adenopathy). Lungs clear as are adrenal glands. When I go to bed, Jack notes that for the first time he is anxious about this news since it shortens the time frame we had hoped for.
Feb 17: Cindy Olive, Jahagirdar’s nurse, calls to schedule a 10:30am appointment Feb 18 with Bal to review the situation and medical treatment options. (Bal calls that evening and speaks with me about his thoughts and treatment ideas.)
Dr. Lukasewycz calls and reviews yesterday’s CT scan results; affirms we understand them and clarifies that a lymphatic tumor is pressing on the kidney, reducing function. Instead of removing the kidney, he will place an internally-draining stent in Jack on Tuesday Feb 22: A ureteral stent is a thin tube that's placed in your ureter to help drain urine from your kidney. One end of the tube is inside your kidney and the other end is in your bladder. (20 minute procedure; 3 hours total operating time) Pre-op exam at 1:20 with Dr Lee and PSA test on Saturday.
Feb 18: Dr Jahagirdar outlines his care plan in an hour meeting with him at his office. He will use last June’s prostate samples for genetic testing (Caras will test all 23 genes), to determine what gene sequencing/aberration is triggering these rapid metastases. He then outlines possible chemotherapy drugs to target these cancers; chemo will start after the stent surgery on the 22nd—that week or the next. (Side effects may include fatigue, hair loss, fluid retention, neuropathy and lower cell count, but many patients have none.) There will be 6 cycles of chemo, every 3 weeks. Every 6 weeks Jack will be retested. Soon he will also have a bone scan and a bone-building infusion of Zometa every 3 months.
Chemo possibilities: 1. Taxotere/Docetaxel; 2. Cabazitaxel; 3. Radium 223 (bone only); 4. Cabozantinib+Atezolizumab (not yet FDA approved); 5. PSMA(Prostate-Specific Membrane Antigen-directed) Leutitium-177; 6. BRCA like mutations: PARP inhibitor tablets such as Olaparib, Rucaparib etc; 7. Microstatic instability=Pembrolizumab; 8. Immunotherapy clinical trials: a. Abiraterone+Abemaciclib b. Cabozantinib+ Atezolizumab (in clinical trial so 50% chance of getting this cocktail vs plain Abiraterone).
Feb 22: With Jack prepped and under anesthesia at Regions 3rd floor surgery, Dr Lukasewycz attempts placing a right ureteral stent between Jack’s bladder and kidney, to drain the latter and reduce pressure. However, the tumor is pressing so strongly on the ureter, that Lukasewycz could not advance a Sensor guidewire, nor perform a retrograde pyelogram (with no passage of dye past pelvic brim), nor advance a Glidewire (followed by another retrograde pyelogram with no advancement of dye flow). Procedure aborted with decision to have Interventional Radiology perform a nephrostomy tube placement the next day. Jack has dinner, first meal (including water) in 24 hours. Sleeps well but wakes up in a puddle of blood-tinged urine.
Feb 23: LLH arrives at Regions at 9am with Jack’s anti-androgen pills in their bottles (so that Jack can take them before the procedure, with the pharmacist’s approval). He gets a shower, pre-op check by a surgical nurse (we suspend the DNR for this procedure), then is taken to surgery about 11:10am in his hospital bed. Returns an hour later with the stent inserted, a blood-tinged drainage bag, looking pale. But as the light anesthesia wears off his color returns and he alert and engaged. Sleeps—good since he must lie on his back for 4 hours.
After a few after-care directions (which, when applied, LLH finds lacking in terms of specificity and supplies), we go home about 5pm. Jack enjoys Sewell’s gift of homemade chicken noodle soup, and we all sleep peacefully for the night. Thank heaven for the internet ideas on showering with a tube coming out the middle of Jack’s back!
Feb 25: Jack has whole body nuclear body bone scan to: 1. Provide a baseline for next week’s chemotherapy efficacy; 2. Compare findings with bone scan of 6/30/2021 and CT scan of 2/16/22.
FINDINGS: Metastases in the left second rib, sternum, right 12th rib, right T11 pedicle, left L3 pedicle, distal left femur, and multiple sites in the bony pelvis have decreased in radiotracer uptake relative to background levels compared with prior bone scan, compatible with treatment response. No new metastases. Right percutaneous nephrostomy tube has been placed.
I am confused that this sounds like good news, after the dismal findings of the recent CT scan. I write Jahagirdar who kindly calls at 9:30PM and explains that Jack’s anti-androgen treatments have been effective in terms of halting further metastases to other bones such as head and long bones, as shown by this NM bone scan. Jahagirdar gives analogy of rogue ISIS fighters in Jack (prostate cancer cells metastasizing to other parts of Jack’s body). ISIS fighters in bones are “in Germany, but out of cash” to carry on; ISIS fighters in lymph nodes are “in Syria and came with a good cash supply so they can carry on their rogue activities.” We both sleep better, recognizing that upcoming chemo will try to halt these “Syrian” rogues.
Mar 1: Chemo Infusion. Jack has his first of 6 chemotherapy infusions of Docetaxel, scheduled every 3 weeks; today’s dose is 80% of regular, to calibrate how Jack handles it. In the meantime, he has just discontinued Enzalutamide, but continues with Orgovyxx (chemical castration). Decadron (dexamethasone), a steroid, two 4 mg tablets to be taken twice a day: day before (2x), day of (2x) and day after (2x) chemo to inhibit inflammation (we missed day-before dose so it was given at time of chemo and after); Zofran likewise given at chemo to prevent nausea and vomiting; Lorazepam on order to treat anxiety and insomnia.
Initial blood tests (pre meeting with Jahagirdar and chemo infusion) are “within parameters for treatment.” Creatinine levels still above normal at 1.31 (normal range is .73-1.18), signaling poor kidney function. PSA is 28.6, a rapid climb since 2/14 (19.2) and 1/5 (7.2). (Lowest point since anti-androgen treatment began was 4.2 on 9/16/21.) JGH still somewhat anemic, so whey supplements are added to his diet.
Still awaiting CARIS sequencing of prostate biopsies.
Mar 2: Meet at 11:30AM with head Urology nurse, Kathryn Anzaldi, who removes abdominal pad/tape from nephrostomy and tube fixation/securement patch. She shows how to clean and position the patch in the future (to be changed every 5-7 days) and sends an order to Handi-Medical supply us with more. We, in turn, send her links to pants designed to hold the tube and urine bag.
RN Cindy Olive calls from Jahagirdar’s office to see how Jack is doing (well) and notes that when the steroid (Decadron) wears off, he may crash.
Meet with PCP Kelly Frisch to review events of the past month: surgeries, chemo and medications. She recommends Jack discontinue statin due to risk of liver damage (5mg atorvastatin); she’s glad he’s not needed the chemo alleviation drugs: Lorazepam (anxiety) and Compazine (nausea) for chemo. She urges Jack NOT to diet. She will check with Guerrero about discontinuing Eliquis (Guerrero wants to keep Jack on it).
Mar 4: Jack awakens with evidence of urine leakage at tube site. Based on discharge instructions, LLH calls Midwest Radiology; examination and possible re-surgery set for early afternoon. Staff finds bag is secure, notes some discharge at tube input site is OK at night as long as nephrostomy is still draining into the bag. Staff shortens tube to prevent kinking (our request).(LLH later writes Kathryn Anzaldi to request prescription for CathGrip double strap to better secure nephrostomy tube so it doesn’t tug at the outlet site.)
Mar 7: Heart clinic sends message to set appointment with Guerrero; LLH calls, waits ½ hour to speak to someone who says to try again in 2 weeks when Guerrero’s calendar opens! Nuts!
Notice increasing yeasty scent emanating from JGH over past week; isolate source as his Depends-area. Evidently this is common in cancer patients and in those who depend on Depends, so will try clotrimazole cream (as for Athlete’s Foot) for starters.
Mar 7-11: Jack is increasingly tired and needs to use the walker much of the time because of poor balance. Afternoon naps, Thursday acupuncture and Gatorade help. LLH meanwhile works with Urology to get prescriptions for nephrology tube adhesive stabilizing patch (surrounds tube exit from body) and Bioderm CathGrip.
Meet with Jahagirdar on Friday, Mar 11 who reviews upcoming schedule since we are mid-way between 1st and 2nd chemo treatments. On the 22nd Jack’s PSA will again be checked (and will be checked going forward every 3 weeks); every 6-12 weeks Jack will have a CT scan to see if tumors are shrinking. When cancer stops responding to a particular treatment, we will move on down the line (see Feb 18 list) until: Jack no longer enjoys life and/or the cancer stops responding to anything.
Jahagirdar also got genetic test results that show Jack has 2 genes with pathogenic mutations: TP53 and AKT1. However, there are no FDA approved treatments for these troublemakers, only trials (not under consideration, since only 50-50 chance of getting the new drug). Jack feels content with this knowledge. Over the weekend we read up on the implications of these errant genes and learn that TP53 is a common in many cancers, has a poor prognosis and is not very responsive to chemo or radiation.
We also show Jahagirdar what we have learned about living with a nephrostomy tube, including cath pants, fixation device and my training and CathGrip securement device. He requests me to write up the SOP so that we can guide others (who need ostomies of various types) re equipment needs, nursing techniques and getting insurance to pay for as much as possible.
Mar 16: LLH writes up memo A draft of my ideas for patient/caregiver info re Nephrostomy Procedure and Aftercare, including YouTube demo of application of StayFix exit wound adhesive patch. Sent to all docs (not heart), Leaetta, plus Bret Haake and Megan Remark.
Mar 16 and on: Jack is losing hair, a clump at a time. He falls in kitchen Mar 17, bruising a hand but not hitting his head. I counsel using walker more, esp at night. Mistakes re (not) closing valve on urine bag continue every few days (and nights). Finish reading Being Mortal and write “That’s All, Folks” memo to friends and family. Bob and Leaetta bring us gift of 80th Birthday Party book (104 pages—includes Jack’s long bio) on the 17th.
Mar 18: With snow and ice mostly melted, Jack walks outside with me for the first time in a long time—uses poles, of course. Does about 1 ½ miles but quite fatigued and somewhat unsteady at home.
Mar 20: Jack is sleeping more (12 hours at night; 2 during the day) and needs a nap to function through the early evening. He appears more drawn and walks with a cane that he fortunately likes. Reports less blood in his urine.
Mar 21: In preparation for second chemo treatment, JGH has reduced dosage of Decadron (dexamethasone), a steroid; one 4 mg pill is to be taken day before (twice a day, morning and night), day of (2x) and day after (2x) chemo to inhibit inflammation.
Mar 22: Chemo Infusion. Second chemo (Docetaxel) infusion at 90% strength, preceded by blood tests and meeting with Jahagirdar; he clarifies that Jack’s abnormal genes (TP53 and AKT1) were made so by the cancer, not inherited). Recommends Covid Moderna booster shot toward end of next 3 weeks (when immunity has rebuilt). Will do CT scan after 3rd treatment to determine chemo effect on tumors, although concerned about doing with contrast dye because this could adversely affect the kidneys.
Blood tests show that creatinine (kidney function) is almost normal; however, during infusion we get disappointing results of PSA, showing an 88.5% increase in 21 days from 28.6 to 53.9.
Mar 25: Jahagirdar calls with good news that Lu-177 PSMA (Pluvicto) was just FDA approved (See Feb 18 entry as one of Jahagirdar’s hoped-for treatments). Therefore, Jack will have a PSMA-PET-CT scan in 2 ½ weeks as a prerequisite to start Pluvicto treatment. Jack continues to have few side effects from the Docetaxel chemo; mostly fatigue. (Dr. Jim Zavoral, a JGH client, insists on connecting Jack with Dr Gordon Grado who has been involved in researching the PSMA technique and Pluvicto (development? application?) JGH speaks with him and sends him timeline; LLH does not see value added of a 2nd opinion when both doctors are advocating same treatment.)
Mar 27: Jahagirdar writes Grado a summary of where we are:
I am a Medical Oncologist in Minnesota. I am taking care of John (Jack) Hoeschler, a close friend of Dr. Jim Zavoral. He is a candidate for Lu-177 PSMA therapy. We are working on obtaining Lu-177 PSMA. If his cancer is PSMA expressing and PSA continues to rise, how soon could he receive Lu-177 PSMA at your institution?
Jack is 80 years old and has Gleason-10, castration resistant metastatic prostate cancer, TP53 and AKT mutations as the sole genomic abnormalities on next generation sequencing by CARIS, low tumor mutational burden, microsatellite stable, homologous recombination sufficient, skeletal dominant mets, but an aggressive and progressive clone in the retroperitoneal nodes causing right hydronephrosis, requiring percutaneous nephrostomy tube, primary refractory to enzalutamide. Four weeks ago he received the first cycle of docetaxel, at the end of which PSA doubled. He has received the 2nd cycle of docetaxel on 3/22/2022. It is too soon to assess response to docetaxel, just after the 1st cycle. PSA, testosterone will be repeated in 2-2.5 weeks, along with a diagnostic PSMA scan.
Fingers crossed that JGH is a candidate and that we can get the newly-approved drug, LU-177.
Mar 30: Jahagirdar writes a clarifying email that yes Jack should get a Moderna booster closer to the next chemo, when his anti-bodies have had a chance to rebuild (LLH got hers on 29 Mar). He notes that he is scouting out LU-177 sources.
1 Apr: JGH gets BCBS approval for PSMA scan (78815) on Thu, April 7 at MW Radiology. This is a sine qua non for approval to take LU-177.
Pacemaker regular reading is uneventful. In the evening Jack is dizzy and weak, with a partial fall. Jake and I put him to bed and his temp varies from 103.1 to 102.6, bp is high normal, O2 is 95%. I text Dr Kelly Frisch who advises his going to Regions ER. Jack O’B joins us since LLH can’t move JGH. Hospital tests of blood, blood culture, chest X-ray are unremarkable, and after JGH passes walking test, he is discharged at his request.
Apr 2: JGH is worse and cannot even sit up in bed for a meal. We contact Frisch who speaks with JGH; both she and Jahagirdar (whom I had to text to cancel dinner) recommend more fluids and food. Bal has him take half-pill or 2mg dexamethasone (steroid) to trigger appetite. JGH able to get into car to meet with Dr. Gordon Grado in Plymouth (radiation oncologist with Phoenix clinic).
Good meeting with Grado who examines JGH and gets brief medical history. He comments that Jack’s prostate is not too enlarged nor hard; he can feel tumors. Believes in summary that JGH has a rapidly growing cancer and that he would be a good candidate for LU-177. (He’s had some patients on it and says it’s a “game changer.”) Although Jahagirdar has JGH on the list for such at the U of M and will get him on the Mayo list, getting the newly approved drug is difficult. Grado will try to get JGH into “Compassionate Care” programs at UCLA and/or Omaha for the LU-177 chemo, until we can do local administrations. Sina qua non is that Jack qualifies for such based on his PSMA test scheduled for this Thursday, April 7.
Apr 5 and before: JGH is intermittently weak and cold. Apr 3 he is fatigued but well enough to go out to an early dinner with Jay and Judy Hoeschler. On Apr 4 he was able to amble outside 1 mile with pretty good balance (had walking poles). Uses cane inside. Eating regularly, but today he went back to bed right after breakfast and after site cleaning and change of his nephrostomy tube securement devices.
Apr 6-9: Jack bumps along, up and down, with periods of looking good, then looking washed out (feeling cold). He complains of being sore in the right kidney/nephrostomy area; Dr Jahagirdar is working on an IR solution with Lukacewyz (urologist) to place an internal drain and eliminate need for external apparatus. Thursday, April 7 he has a PET PSMA scan in order to qualify for LU-177 chemo.; we mail copies of this and previous scans to Grado in AZ (to arrive Monday, Apr 11.) On Friday the 8th JGH has his regular pre-infusion blood tests; PSA has gone down 2.2 points (to 51.7).
Bal calls us both Thursday evening and Friday late afternoon; clarifies that although JGH is signed up several places for LU-177, insurance will only cover its use when all other treatment options are exhausted. Says PSA shows docetaxel is working and to remember that we only have so many bullets in our arsenal: docetaxel, then cabazitaxel, then LU-177. He cautions Jack to enjoy his family and close friends now; says that when chemo stops working or JGH decides to stop it, he will die quickly (a comfort to Jack). Bal also comments that Jack hasn’t sounded good in the most recent conversations…a prelude to what comes next.
JGH goes to bed exhausted. Has trouble walking and lifting his legs and trunk to get in and out of bed. He is mumbling a lot in his sleep and wakes up about 2am, having difficulty going to the bathroom, and getting in and out of bed. Moreover, he cannot complete full sentences. After some discussion, and worried he is having a stroke, I call 911 and the fire department comes. Assessment for stroke is negative, and Jack is able to walk and get up from a sitting position, as well as speak in complete sentences. TIA? The next morning his gait, position change and use of full sentences are compromised. I ask neighbor, Dr Jesse Miller (IC doctor at United) to assess JGH and whether or not we should go to Regions ER. He thinks JGH is negative for stroke or TIA, and this is more likely a UTI. We confer with Jahagirdar and Frisch, and start JGH on 500mg Cipro 2x a day. FRH is here and helps get Jack showered and changed, then back to bed.
Apr 10: Jack is lucid, can move around with a cane, but still not peppy. Handwriting has substantially deteriorated to the point it’s difficult for both of us to read. Boys come for breakfast and play their violins for us, including Bach Double which Jack wants them to play at his funeral.
In the afternoon JGH tells Larry Siegel that he is considering stopping treatment and going into hospice. We have a good discussion and I urge him to try chemo at least one more time, before he decides to let go. He agrees.
Apr 11: Jack’s left calf is considerably swollen—concerned about DVT, so write Dr. Kelly Frisch. She’s not on duty so send note to Bal. Go together to the cabin and JGH color is pale and he’s very fatigued. His apparent reaction to Cipro reminds me of his reaction to erythromycin—and to Cipro in January (after a week on it). Write Bal (copy note to Frisch) and he advises JGH that evening to stop Cipro stopped as of April 12).
In preparation for third chemo treatment, JGH continues on reduced dosage of Decadron (dexamethasone), a steroid; 4 mg pill is taken 2x day before (morning and night), day of (2x) and day after (2x) chemo to inhibit inflammation.
After dinner JGH tells LLH that he realizes that although he is ready to die, our family is not prepared—yet. I urge him to keep fighting, and that if he has other days like the 10th, he can call it quits and we start hospice. We dance in the kitchen (Shearing channel on Pandora) and vow to dance at least once a day until he can’t. (One week later, 18Apr, Fritz tells me that Jack had substantial blood in his urine Sunday and Monday—but JGH told Fritz not to tell me.)
Apr 12: JGH looks better but reports feeling unsteady. We meet with Drs. Jahagirdar and Hu (fellow) and review PSMA scan of prior Thursday, Friday’s blood tests, options and opinions. Jahagirdar believes that Jack’s ‘malaise’ is symptomatic of the Docetaxel chemo effect; he recommends postponing chemo this week. We also review the PSMA scan that shows (new to us) tumors in his upper chest and 2nd rib from the top. We look at other tumors throughout, especially the large tumor on the prostate. We review Henry Buchwald’s suggestion to involve a Dr Warlich at the U (whom Bal knows and is a urologist); Bal will handle, it seems.
We develop a plan:
1. Jack should get a Covid booster shot (scheduled 4/15 at Walgreens)
2. Bal will again contact Lukasewycz to review Jack’s PSMA scan and determine if he can eliminate nephrostomy via stent placement (would be a psychological boost to JGH)
3. Bal will do a biopsy (Mon, Apr 18) of Jack’s 2nd rib to determine if a PARP inhibitor might hold off bone cancer growth (and concomitant pain). (Biopsy is to look for new acquired mutations (most commonly BRCA1, BRCA2, and ATM) that might respond to a PARP inhibitor such as olaparib. Sequencing of olaparib vs cabazitaxel vs Lu-177 is to be determined.)
4. Blood tests scheduled for next Monday, the 18th, to determine effectiveness of Docetaxel; if not effective, then switch to Cabazitaxel at chemo session next Tuesday, the 19th. (Restart steroids/dexamethasone Monday (after blood tests), 2x Tuesday and 2x Wednesday, bracketing Tuesday’s chemo treatment.)
5. Jack is registered at Mayo and in line to receive LU-177 if insurance approves (insurance usually demands one already exhaust other chemo possibilities prior to approval); if approved, we may just move to LU-177.
13 Apr: We visit PCP Kelly Frisch. She urges us to discuss our advanced directives with our children and meet with the social worker in oncology (to learn of support services and counseling available). She prescribes Triamcinolone ointment for rashes on Jack’s arms, and frequent use of moisturizer on his skin. Finds no adverse swelling of left calf. Will take up the battle to get Jack’s nephrostomy tube removed and stent inserted.
15 Apr: Friday afternoon Cynthia Olive, RN in Jahagirdar’s office calls with several updates: On Monday at 6:30 AM JGH will have IR procedure to reverse his nephrostomy. He will also continue with the prior-scheduled blood draw (pre chemo on Tuesday) and bone biopsy at Regions. She also asks me to contact Mayo (where Jack would most likely get his LU-177 infusion) for account information; I follow up with Mayo and complete Jack’s existing account update. (no Eliquis starting Friday evening until Monday evening, when JGH will also resume steroids in prep for chemo.)
18 Apr: Late Sunday Fritz stays over from flight captain training in Eagan and moves to our home, so he can help Jack get ready for Monday surgery. We arrive at Regions at 6:30AM for IR procedure (antegrade ureteral stent placement through existing nephrostomy access)
--At 8:40AM Dr. Jorge Leon reports that his procedure was successful in terms of placing a tube from the kidney to drain urine through the penis (able to get dye down although ureter blockage caused by tumor remains). However, JGH will feel more urgency due to bladder irritation of tube until he gets used to it. Has a urine collection bag on his back at nephrostomy opening (which he compliments me for keeping so clean and healthy looking—I asked if he was impressed!) which can be peeled off in a day or two. Urology will now take over and exchange the tube every couple of months…
--Jack has a blood draw that shows his PSA is 55.9 (not bad considering that his 3rd chemo was delayed a week)
--Biopsy of Jack’s 2nd left second rib metastasis which will be genetically tested (Caris) for targeted therapy
Lukasesewycz calls in the afternoon, concerned that the IR did not leave nephrostomy tube in place as a backup to ureteral stent).
19 Apr: Chemo Infusion. We meet with Jahagirdar and Hu who are pleased with stent; JGH is feeling more positive and ‘well’ with this intervention, although he is peeing blood (Bal says its normal with this surgery). Bal, despite being on vacation last week, got the surgery scheduled and conferred with Mayo re JGH possibility for LU-177 treatment. Unfortunately, Jack’s lymphatic tumors are not PSMA positive (a requirement); this may mean that the tumors are shrinking with the chemo or that that have mutated to a ‘primitive’ cancer. He sets up weekly appointments to meet with him and have infusion hydration or chemo (the latter every 3 weeks).
JGH then has his docetaxel chemo infusion, 80% level. During the infusion we meet with Denise Shannon, a medical social worker. She describes services available: Home Care where Medicare pays for professional home services but not home care such as bathing (businesses like LifeSpark would provide custodial care for about $40/hr.) With hospice, patient assigns Medicare insurance to, for instance, Health Partners Hospice where all care comes to the patient: doctor, primary nurse, social worker, chaplain and equipment (hospital bed, commode, mechanical chair, supplies).
20-22 Apr: Jack has good day on the 20th, hosting the Sewells at our home. Develops hiccups that continue on and off…On the 21st JGH gets blood and urine tests at Regions lab; Dr Lukasewycz calls to report (with delight!) that Jack has normal creatinine levels, meaning the IR ureteral stent is working (not concerned about blood in urine, evidently a result of Monday’s surgery). Friday JGH shows more fatigue and chills, helped by regular small meals and Ensure, but probably the chemo doing its thing.
23-24 Apr: Hiccups have dissipated. JGH feeling generally well (has gone to short am—1hr- nap and longer pm-2hr-nap). Dr. Chris Thomforde meets with each grandson and Jack in the afternoon for grief counseling, and we attend SPA music concert on the 23rd. Sunday evening we enjoy a family dinner at Luci Ancora with all members present (Fritz and Julia in from Pensacola). Jack offers limoncello toast: to meeting in Rome!
25 Apr: Jack gets up each hour at night to use toilet (fine) but is sluggish throughout the day, day 6 after chemo. I contact Oncology in the morning since he is evincing lack of core and leg strength. He wants to sleep all day but eats good breakfast and lunch. Low grade fever, but generally normal pulse, O2 and blood pressure. No Covid.
At 4:30PM I decide to bring him to ER since he can no longer use his legs effectively and consistently; I had to call grandson and son in law to even get him back into bed since he is falling to ground when he tries to get out of bed. ER and Regions are quite full and it’s a struggle to even get his vitals, blood etc tested (has a chest X-ray). Several conversations with oncologist Bal Jahagirdar (who pushes to get Jack tested and roomed) and a Dr. Susannah Wagner (hospital internist) who is reluctant to admit him. He spends night in ER room. Lower legs extremely swollen.
26 Apr: Blood analysis shows presence of Enterococcus faecalis (bacteria causing Bacteremia) (Vancomycin Sensitive), so they start Jack on antibiotics (Ceftriaxone/Rocephin and Ampicillin/Omnipen) at 4:30AM; will repeat every 24 hours. Are continuing to culture the infection to determine exactly what it is. Meet with PA/infectious disease re. blood infection. Concerned that it could be in the heart. (TTE and TEE exams will be done.)
Mid-afternoon Jack is transported to Observation unit 2nd floor. Pleasant room and attentive staff. Vomits up a dinner we didn’t order (grilled cheese sandwich); Kristen stays with him to closing at 8PM.
27 Apr: Jack has trunk (chest, abdomen and pelvis) CT scan. Report (cf to Feb 22 scan) shows some tumors shrinking, many (bones, lymph multiplying and increasing).
Summary impression:
1. Progression of metastatic disease.
2. Small bilateral pleural effusions with atelectasis and some peripheral consolidation in the left lower lobe which could represent pneumonia.
3. Moderate right hydronephrosis with stent in place.
4. Bladder wall thickening and perivesical soft tissue stranding. This can be seen with cystitis.
Addendum cf with April 7 Pet scan which shows less change to tumors.
Jahagirdar visits after office hours to discuss case, emphasizing need for ongoing attention/intravenous antibiotics to treat this infection. Moreover, same bacteria as in blood (Enterococcus faecalis) now found in spades in bladder (48 hr culture). Question is source: new stent or something else? Although a port would be handy, Bal doesn’t want to risk introducing a new element that might attract a bacterial colonization; picc line (peripherally inserted central catheter or percutaneous indwelling central catheter) at most.
28 Apr: Good meetings with Urology PA (Carissa Valeri) and Hospitalist (Demetrios Andrisani). Urology (Lukasewycz) is studying tests and images to determine next steps: to replace the stent (which may not be infection cause) now and risk more. We learn that the stent, a small tube, only drains 10-30% of urine; remainder spills down outside of tube.
Dr. Andrisani lays out Jack’s treatment plan (6x daily antibiotic infusions [ampicillin] for at least 2 weeks) and notes that he can stay in Observation ward (although he’s a full admit) until he can transition to another care unit like Capitol View. Should they find the infection in his heart, he would need longer care. Andrisani returns later in the day to confirm that Jack will not be ‘kicked out’ to home care which he and Kelly Frisch caution me against (I do know my own limits…at times!)
Evening meeting with Dr. Rebecca Peglow (Infectious Disease) who gives a thorough review of Jack’s case. (From her writeup later I note that Jack’s C-Reactive Protein is very high (11.9), red blood cells are low (not good), RDW is high (anemia). She orders TEE for the 29th; (TTE, front of heart, showed no infection). If Jack has a heart and/or pacemaker infection, he would need 4 more weeks of antibiotic drips. That would be a decision time for us because we don’t want to spend summer in institutional care.
29 Apr: JGH meets with Urology PA and learns no stent exchange procedure is planned, although Lukasewycz is in over the weekend. LLH and JGH meet with D Andrisani and reiterate desire to move to Capitol View but will also look at other St Paul transitional care places. Our kids set to tour/interview Sholom Home, only to find that the social worker has identified opening in the St Louis Park branch, not the W 7th as requested. Like SH East (tour by volunteer) so opening for JGH level of care unknown.
At 1:10 PM Jack taken for TEE (Transesophageal echocardiogram) to determine whether or not heart shows evidence of Enterococcus faecalis. None detected.
At about 8pm Vascular RN Rebecca Merrill placed a PICC line in JGH right arm for drug delivery going forward:
A 4 fr. single lumen PICC., was placed in the patient's right arm in the basilic vessel with ultrasound guidance, utilizing sterile technique on the first attempt. Total catheter length: 40 cm, with 0 cm external catheter. No complications were encountered during the procedure. A sterile antimicrobial disc, catheter stabilization device and transparent adhesive dressing was placed over the site. The patient will have this dressing changed by the Vascular Access Service in 7 day(s).
X-ray confirmed proper placement with PICC tip at cavoatrial junction. (Per FRH later infusion again blocked from regular drip, so switch to new PICC line made for smooth delivery.)
30 Apr: Blood tests at 6AM show C-Reactive Protein levels (infection) are coming down (from 11.9 on 28Apr), but at 5.9 well beyond acceptable range (0-.7). Red blood cells, hemoglobin and HCT are still very low. Jack complains of pain in lower right rib—cancer spot? Tylenol helps.
Dr. Andrisani reviews recent tests, noting low red blood cell count is due to infection (production of new red cells slows down with such) and chemo. Generally pleased with his progress and working with social worker on TCU placement (all admissions closed over weekend).
Lukasewycz stops in at 6:15PM and wants to do a tube exchange this coming week. Needs to coordinate with IR lest we need a backup nephrostomy tube.
1 May: Good meetings with Andrisani and Lukasewycz. On hold until Monday when we get Jack’s surgery scheduled and Social Worker can check-out Capitol View as TCU option.
2 May: Meet with Andrisani, Frisch, Peglow (ID). JGH generally doing well, although due to extremely swollen left leg he has an ultrasound to rule out DVT (neither DVT nor popliteal cyst). Quite fatigued so naps a lot and resists walking…but reading paper, articles and listening to MPR News. Stent exchange and nephrostomy standby (IR) scheduled 4pm 4 May.
3 May: Drs. Jahagirdar and Hu visit Jack pre-visiting hours and encourage exercising in room. Busy day with infusions, meals and ward walks. Meet with case manager re post-hospital care; Capitol View preferred. JGH wins (on every count) 6-year old case in Ramsey District Court; interviewed for Strib.
4 May: Work with new Case Manager to get JGH into Capitol View; LLH does not feel competent to do 4x or 6x daily infusions through his PICC line. BCBS appears to well cover TCU; LLH gets OK to have JGH go into a shared room in CV-TCU. PT meets with JGH (he does not remember prior meeting week before) and gives him some daily exercises
Late afternoon, Lukasewycz does successful stent exchange surgery (prior stent was colonized with bacteria docs believe); thinks tumors have softened since this was so slick cf to Feb 22 failed effort.
5 May: OT evaluates Jack and reminds him of meeting last week (blood infection caused huge brain fog); seems functional with a walker. Still, he loses balance in room and LLH rights him.
At 3pm KBH moves him to Capitol View transitional care on Regions campus; will be discharged next Wed May 11 when antibiotic infusions are done. JGH reports that bulb delivery of antibiotic is easier and he is practicing doing it in case he can come home sooner; ampicillin now delivered every 6 hours not every 4. Feeling better and more optimistic.
6-7 May: JGH helps roommate, Eugene Barrington, with packing; has Kristen bring 2 sailing bags for Eugene’s belongings (has been in Regions since February!). This leaves JGH alone in a large room, most commodious for short family visits. (NP but not the promised doctor shows up for exam.)
Color is bad on Friday, improves on Saturday (likes PT and OT) until evening when he seems more loggy and just wants to sleep. Has not had a BM for 5 days (always tells nurse that he had a BM “two days ago”) so with Senna, Miralax and prune juice, finally get results Saturday evening. Get results of May 6 PSA test which show a decline of 14.4 (26%) points from 55.9 (April 18) to 41.5.
Vomits dinner.
8-9 May: PT and OT okay; vomits at lunch after just broccoli. Same continues despite other food selections, so moving toward a smoother diet. Blood work shows onset of infection. BM on 8th; none on 9th.
10 May: We meet with Jahagirdar who notes rapid rise CRP, WBC, platelets (neutrophils and monocytes) are signs of an infection, probably populating around the new stent. So Jack leaves the TCU and is readmitted to the hospital on 2nd floor.
11 May: We meet with hospitalist (Carrie Wesely) and infectious disease (Gregory Siwek) who suggest, after studying his improving daily blood draws that: Jack’s PICC line be removed (probably source of reinfection) and that JGH go off antibiotics and go home the 12th, presuming these downward trends continue. (Could some inflammations markers be caused by the cancer?) Jack agrees to discharge pending agreement of Jahagirdar and Frisch.
LLH mentions that JGH has been throwing up almost every meal for the past 4 days; fluoroscopy upper GI shows no blocks. Soft foods help. Right lower rib pain (metasteses?) continues.
Jahagirdar calls in the evening noting that he wishes to have us meet with colleagues at the U who are developing some biological attacks on cancer that would complement the chemo. I agree that we should meet.
12 May: JGH is discharged shortly after noon, after a joint conference with Drs. Wesely and Siwek. Key: Blood culture is negative for infection after 72 hours. Should JGH show again signs of acute infection, we are to take him to ER for tests; this directive will be in his file so we don’t re-encounter the resistance to admission (as on April 25). Signs of acute infection will primarily present in urine change, fever and flank/abdomen/back pain. Home OT and PT appointments requested, and exercises assigned by therapists.
17 May: Chemo Infusion. After a relaxing weekend at home, JGH starts the testing and chemo cycle after a 4-week break. We meet with Jahagirdar who confirms the 4mg dexamethasone 2x daily (day before, day of and day after chemo) and adds 1 4mg Dexamethasone on Thursday am, and 2mg Dexamethasone (1/2 tablet) Friday morning. Jahagirdar asked Infectious Disease Dr Siwek re advisability of prophylactic amoxicillin (We report that Siwek advised us not to use any antibiotics if Jack shows signs of infection, but to bring him to ER to test urine and blood in order to identify the infection). Dr. J also explains that the interuretal stent didn’t cause Jack’s infection, but that the infection already present in the urinary tract colonized around the stent (based on timing of infection spike and stent placement).
Dr. J has also set up for us to meet with U of M genitourinary oncology scientists (Emmanuel Antonarakis and Nick Zorko) who are developing biological processes to attack cancer cells, more or less similar to LU-177 approach (noting that PSMA is in short supply now for the testing needed before using LU-177).
20 May: After several good days (JGH attends boys’ baseball and lacrosse games), Jack begins to feel dizzy. Dr J calls in the evening to check on Jack, and Jack notes his lower rib pain is now spreading across his scrotum; Dr J has me take his blood pressure and pulse while lying down and then standing. Pulse about 90 in both positions, 105/63 (Lying) and 78/51 standing. Dr. J suggests he’s dehydrated and that he take care to sit, stand and walk with caution; use walker.
23 May: JGH reports no pain in his lower rib, privates area for the past 2 days.
24 May: We meet with Jahagirdar who decides against need for saline hydration. PSA has dropped to 28 from 44.4 one week ago. Other labs (WBC) and kidney look good and improving. Dr. J. notes that days 7-15 are the low point of this chemo cycle, and the key to feeling well and not fatigued is hydration, at least 4 liters a day.
25 May: We meet with Drs. Antonarakis and Zorko at MFairview Clinics, who are researching more advanced cancer treatments of urinary tract etc. Dr A comments on JGH’s robustness for age 80, is pleased Docetaxel is working to reduce PSA, recommend completing 6 dose regimen and perhaps two more (can get neuropathy with 7 to 8 doses). Believes nephrostomy tube led to sepsis.
Next step would be Pluvicto (on hold at Novartis due to e coli contamination, so U and Mayo and others still don’t have it); to qualify need 2 consecutive rises of PSA. Pluvicto (Lutetium-177) has fewer side effects than chemo. Need to get them Jack’s PSMA scan (reduced PSMA brightness may have been due to Jack’s chemo) and to meet in September for next steps.
Jack and I describe our adherence to Atul Gawande’s guidance and unwillingness to take extreme steps just to gain a few more weeks; but would like to try Pluvicto if qualified.
Antonarakis describes other tacts he and his team are working on, biological and immunological treatments of advanced prostate cancer: CAR-T cells (Chimera Antigen Receptor) using engineered white cells. KLK2 immunotherapy (T-Cell-Redirecting Agent Targeting Human Kallikrein 2 (KLK2)), and NK (natural killer) cell therapeutics.
I am a genitourinary medical oncologist with a particular focus on recurrent and advanced prostate cancer. I conduct clinical and translational studies to bring new therapies to patients with prostate cancer. In particular, I am interested in developing novel androgen-directed therapies, genetically-targeted therapies, and immunotherapies for men with recurrent or advanced prostate cancer, and using germline and tumor genomics to inform precision oncology approaches for these patients. I also have an interest in liquid biomarker development, including the clinical validation of the AR-V7 marker as well as DNA repair markers and their therapeutic implications. I am also involved in mentoring fellows and junior faculty in the clinical care of genitourinary cancers and the development of translational research strategies related to prostate cancer.
Antonarakis report on meeting:
Mr. Hoeschler is an 80-year-old man with metastatic CRPC (Gleason 10, TP53/AKT1-mutated) who has previously received enzalutamide, and is now receiving docetaxel chemotherapy. His ECOG score is 1. His pain score is 0/10.
We began by discussing the standard treatment options that are still available to him (if he developed progression on docetaxel). The first option would be a second-line chemotherapy agent such as cabazitaxel. We also discussed the recent FDA-approval of Lutetium-PSMA-617, although the global supply of this product is currently on hold until further notice. In addition, his recent PSMA-PET scan showed heterogeneous PSMA uptake overall, with faint PSMA expression in the bulky retroperitoneal and pelvic lymph node areas. Thus, Lu-PSMA-617 would clearly not target all of his metastatic disease. In addition, due to his AKT1 mutation, he could consider off-label treatment with ipatasertib or capivasertib. Finally, the use of radium-223 would not be ideal in this setting, due to the extensive extra-osseous metastases that are present.
There is also a potential concern that his bulky retroperitoneal and pelvic lymphadenopathy may represent a transformed cancer, especially in the background of Gleason-10 disease. Thus, consideration could be given to obtaining a new percutaneous biopsy of this lymphadenopathy. If this is safe and feasible, then the tumor biopsy material could also be sent for a repeat genomic analysis with Caris. Alternatively, he could undergo a ctDNA test such as FoundationLiquid or Guardant360.
We then turned our attention to review our clinical trial portfolio. The patient would be eligible for a clinical trial using a KLK2-directed CAR T-cell therapeutic. However, this trial has a long waiting list, and it is also unclear whether this patient would be fit enough to tolerate lymphodepleting chemotherapy. We also have a second non-therapeutic study involving a one-time leukapheresis procedure for collection of CTCs. At this time, he did not express interest in our clinical trial program.
27 May: Jack reports sensitivity/pain in lower left tooth or jaw (can’t pinpoint).
28-30 May: Jack is very low energy and desires to sleep a lot during day. More unsteady on feet. Has to be helped out of chairs, much of the time. On 30th goes to Ft Snelling with nephew and grandsons to tour new exhibits. Rides in transport wheelchair. Thad Withers has him try Pedialyte Sports which he likes and which seems to help.
31 May: JGH discouraged by his weakness, particularly his difficulty/inability to rise from a chair or toilet alone. We meet with Drs Jahagirdar and Hu. Blood chemistry looks good with no signs of dehydration. PSA up to 38.2 from 28.0 the week before, a disappointment. “He feels that he is at the lowest point in the cycle with more fatigue/weakness over the last few days. He is having difficulty standing from seated position; no dizziness or falls however. He also notes some left lower rib pain (responsive to Tylenol) and right shoulder/arm weakness (difficulty raising arm above head level) for the last day.”
1 Jun: Jack has CT scan of chest, abdomen, pelvis at Regions. Disappointing results:
1. Progression of metastatic disease in the chest, abdomen and pelvis.
2. Progression of right hydronephrosis.
3. Resolution of right pleural effusion and increase in left pleural effusion.
In the afternoon JGH vomits his post-test lunch. Jahagirdar orders Zofran but prescription is held up due to prior auth. (LLH ends up buying one pill for $15.59!) Could cause be the contrast dye drunk on empty stomach for the CT scan?
We meet with PCP Kelly Frisch at 5PM. She examines Jack’s abdomen and lower back where he expresses tenderness. She suspects a UTI and orders urine test that shows substantial blood in JGH urine. Culture is performed…with results tomorrow. JGH starts on 500mg Amoxicillin 3x daily 10 days.
2 Jun: During the night JGH reports feels better on the Amoxicillin and apparently can move his limbs with more agility getting in and out of bed. Tylenol (500MG) relieves midriff pain that radiates from scrotum out. During the day he is challenged getting in and out of chairs. Vomits any angular food (like lightly cooked veggies), so we stay with egg salad, chicken noodle soup and other smooth entrees.
3 Jun: JGH remains fatigued and feels better at times, then less so. Goes to movie for William’s birthday.
4 Jun: Urine culture results show >100,000 CFU/mL Enterococcus faecalis, UTI certain. Bal texts Lukasewycz and has JGH stop Eliquis (stent removal and/or exchange will probably happen Monday). Bal underscores giving JGH amoxicillin every 8 hours, not just 3 times a day (at meals as we had been doing). Struggle with Walgreens to get Zofran to abate the vomiting (unsuccessful). JGH shares a light late lunch with family on the deck; immediately vomits (no strong odor). At night he also vomits his Pedialyte into a container.
5 Jun: JGH has acid reflux but doesn’t vomit. William O’Brien and Ellen Kim play the Bach Double Violin Concerto (Jack O’B is sick) before a cluster of family and friends. JGH endures despite ‘meh’ and fatigue.
6 Jun: JGH has blood tests which shows PSA rise to 54.6 from 38.2 on 5/31 and 28.0 on 5/24. Will switch to Jevtana/cabanitaxel tomorrow for chemo since docetaxel no longer working. Stops Eliquis in preparation for Thursday’s biopsy procedure.
Fritz takes Jack to Regions for nuclear bone scan. Jack vomits shortly after receiving dye for scan. (In the PM he gets prescription for sublingual Zofran/ondansetron to relieve nausea/vomiting.)
Nuclear bone scan:
INDICATION: Malignant neoplasm of prostate
COMPARISON: CT of the chest abdomen pelvis dated 06/01/2022 and nuclear medicine bone scan dated 02/25/2022, PSMA PET/CT dated 04/07/2022
TECHNIQUE: 25.4 mCi technetium-99m MDP, IV. Anterior and posterior delayed whole-body images at 3 hours with additional spot images of the skull.
FINDINGS: Radiotracer uptake in the sternum, left posterior second rib, left L3 posterior elements, right L5-S1 posterior elements, right acetabular region, and left anterior pubic bones/ramus suspicious for osseous metastases and correspond to radiotracer positive lesions seen on prior PSMA PET/CT dated 04/07/2022, however there are new foci of uptake in the right lateral eighth and ninth ribs suggesting mild progression of disease.
IMPRESSION:
Findings favored to represent progressive osseous metastases with the development of new lesions in the right lateral eighth and ninth ribs.
Jahagirdar calls about 9PM. I report Jack self-mobilizing better, perhaps a result of the steroid he has taken twice today; Bal says he should stop the steroid (may promote the UTI) and go to laboratory for aa urine analysis before seeing Bal on Tuesday. Bal suggests we delay the chemo from Tuesday until Thursday, and he will talk to Lukasewycz about the stent exchange since prior stent now likely colonized with bacteria.
7 Jun: JGH has blood and urine tests; UTI still evident, but not as virulent, so Jevtana chemo infusion is postponed a week to 14Jun; amoxicillin prescription renewed for another 10 days. Has pre-op exam in Jahagirdar’s office, then Covid test at 401, all in preparation for liver lesion biopsy and stent exchange on Thursday, 9Jun. Vomits en route Regions; Bal recommends he take sub-lingual Zofran ½ hour before each meal. Is to discontinue Eliquis until after procedures. Continue relugolix. Discontinue dexamethasone which is not needed with Jevtana.
JGH reports moving more independently and with less effort.
9 Jun: Has successful stent exchange, although urologist reports some internal resistance (unlike prior stent exchange on May 4 when Lukasewycz reported slick exchange with shrunken tumor) biopsy held due to infection. In room started on vancomycin infusion. Still has difficulty moving in bed, cannot stand without assistance to use urinal. Sleeps most of afternoon; LLH discusses with doctor and posits that sleeping pill rather than anesthetic (JGH usually alert shortly after fast-acting anesthetics wear off) is causing this extreme fatigue, and recommends against a lidocaine patch for his back pain that has generally subsided anyway. Legs remain very swollen.
LLH meets with nurses, social worker and doctor (Laidig). Laidig diagnoses hypercalcemia (too much calcium in blood) and hyponatremia (low blood sodium), and says to admit since will need to be in hospital at least two more nights. Will resume apixaban tomorrow, 10 Jun. Pharmacy approves relugolix brought from home, so JGH resumes taking it at 3:30PM.
Purchase IPhone 13 for Jack and sync with watch (10 lost in transit from ER to 5331). Kristen comes in evening and works on kegel for men exercises to strengthen his core and legs.
10 Jun: LLH comes at 10:30AM and notes little improvement. JGH just switched to ampicillin drip from vancomycin (due to rising WBC). JGH more alert than his somnolent self of yesterday, but not great. Still little core/leg strength; had been sitting in a chair for an hour, but nurse concerned he was very unstable walking (two people and walker). LLH asks for consult with infectious disease (Peglos/Siwek) and Dr. Julie Laidig follows through. Update Frisch and Jahagirdar. (LLH looks for missing phone using Find My iPhone to no avail—believes it was tossed in a waste receptacle based on last location.)
Meet with infectious disease PA Hannah Rector who is concerned that infection came back so soon after hospitalization (could it be in spine?). Will do MRI of spine and bladder scan. Communicate with Jahagirdar who cautions that infection of other body parts, particularly the vertebral bodies and pacemaker hardware need to be ruled out (notes that ampicillin and amoxicillin work on these sites) and need to see the MRI results.
I requested no more ambien (too knocked out the following day); at his request was given 50mg trazodone for sleep. Has condom cath, according to report.
Kristen does evening shift and says JGH good answering questions to medical staff.
11Jun: JGH calls home saying MRI folks need Pacemaker info. Thereupon follows a scramble by LLH to find Medtronic Pacemaker info (and fax it to Regions MRI—card not in JGH wallet), only to learn that Medtronic rep has to disconnect his pacemaker in order to do MRI; but that service only available M-F, so spinal MRI won’t occur until Monday. In the meantime, JGH will has a ultrasound of the kidney at 11am (mild left kidney hydrophrenosis; liver lesion is 2.9cm).
Is a bit better (LLH arrives about 11:30am) and walking with help and using toilet (constipated but now on senna)…but still very weak. Able to shower with help. His legs are very swollen so nurse wraps them (right leg is now the bigger of the two, a reversal). Receives 2 grams ampicillin every 6 hours.
Still constipated…we speak by phone at 8pm and he reports having done 2 laps around the nursing station but doesn’t have full feeling in legs.
12Jun: JGH feeling marginally better today, although his CRP (inflammation marker) is still very high. Finally poops after 6 days (mess). Clear in thoughts, fatigued and somewhat crabby. Need tomorrow’s MRI (and Medtronic tech to turn off his pacemaker) to determine whether or not infection resides in spine. Afternoon sleeps heavily and I again ask staff NOT to give him trazadone at night; not only is he not awake enough to exercise, he hallucinated throughout the day. Finally gets a shower at 4pm. Due to short staffing and dying patients on floor, Kristen and I both need to help with his mobilization and assistance. Lousy weekend with little progress in any dimension.
13Jun: Jack calls me at 9:20AM and states he thinks it time to do into a hospice facility; I tell him we need to do the MRI and see whether or not the infection can be treated. If not I’ll line up a help team and we’ll keep him at home. Then write Frisch and Jahagirdar:
Dear caring caregivers:
Jack and I just had a good talk over the phone. In a word, he thinks he should be going into hospice since he cannot walk without major assistance (two people). As you are probably aware, the MRI was delayed on Friday due to others in line ahead of him, and then postponed over the weekend since they need Medtronic techs to come disconnect his pacemaker.
This resulted in a fairly lousy weekend, healing wise, particularly Sunday when the small staff had other issues (dying patients—I get that!) —luckily Kristen and I could help with the walking but basically Jack didn’t get a shower until 4pm on Sunday. I literally begged staff NOT to give him trazodone again, because not only was he zonked out from 11:30 to 2:30/3pm (and almost unwakable), but he began to hallucinate during his waking hours (a first in our 56 years of marriage!). I believe Nancy, his nurse this morning, said he did NOT get trazodone last night. (FYI the Ambien made Jack sleep all day Thursday, after admission Wednesday, so the nurses switched to trazodone. At home, Jack has never taken more than 2-3mg melatonin.)
I encouraged Jack not to jump the gun with assumptions regarding the infection, and I don’t believe he is—but after 6 days (Wed-today) of being unable to walk, he is just trying to be realistic. He offered to go to a care facility to die, but I told him that we wanted him to be at home where we could be with him and he could enjoy the garden.
Therefore, we are asking for your guidance. Hopefully the MRI will get done today (just now heard it has been scheduled for 1PM today) and we will see some treatment options. Otherwise, we will be turning to you to help us make the most sensible and compassionate decision for Jack. (I have asked a friend/helper to line up a team to help care for Jack at home.)
Thank you for all you’ve done for us and will continue to do for Jack and our family.
I go to the hospital and Jack and I talk: he’s most afraid we will try to keep him alive and I promise him not. I remind him of his choice to stop taking food and water, as my mother did. That calms him.
MRI summary:
1. Diffuse metastatic disease.
2. No extraosseous extension of tumor.
3. Multilevel mild degenerative change without high-grade canal or foraminal stenosis.
Chest X-Ray summary:
IMPRESSION: Left subclavian dual-chamber pacer unchanged. Heart size and vascularity are normal. Increased retrocardiac left basilar atelectasis/consolidation and small effusions, greater on the left. Medial right basilar opacity slightly increased. No pneumothorax.
Dr Julie Laidig (doctor on Oncology hospital ward) notes:
Update: 7:35 PM updated pt/wife about MRI - that there was no infection identified. He/they were leaning in favor of comfort focused care, but after phone conversation w/ Dr. Jahargirdar, they agreed to proceed w/ liver biopsy to eval for small cell transformation (if present, he would be eligible for add'l chemo). Will need to continue goals of care discussions. If pt remains bedbound, he does not want any life-prolonging treatments.
14 Jun: Dr. Jahagirdar and Dr. Hu meet with us early morning:
I had a long discussion with Jack and his caring wife Linda. He will undergo liver lesion biopsy tomorrow. If it shows small cell transformation, then carboplatin + VP16, given as low dose weekly regimen would have an acceptable probability of response. If the biopsy shows adenocarcinoma of the prostate, then potential benefits of cabazitaxel may be equal to its potential toxicities in his current state of health with declining performance status and albumin and hospice at home would be appropriate. Physical therapy consult and whey protein supplementation are being requested. I will be in touch with Mr. And Mrs. Hoeschler at the liver lesion biopsy results are available.
At 11AM we meet with Melissa Arch of HP Hospice and get a comprehensive description of hospice services; we sign up. JGH comforted that they will support a decision to stop fluid and food intake.
Jack stays overnight in preparation for the next day’s needle biopsy of the liver, with the hope that it small cell cancer, not metastasis of prostate cancer to the liver. We call Fritz to come help bring JGH home on the 15th, call Jake and Mo (traveling to Europe the next day) to come say goodbye. Before they arrive I lay my head on Jack’s chest he expresses his lifetime of love and great partnership.
15 Jun: Jack has needle biopsy (results 24 hours out). Fritz and I go to hospital late AM and JGH is asleep. Nurse suggests we leave for a couple of hours, so we go to check out stair lifts, ramps and have lunch. About 1pm JGH calls from hospital wondering where we are, so head in and he’s fully dressed; however his pants, loose of last week, cannot be fastened so his extra pj pants due the trick. We wheelchair him to the car and take him home.
Jack able to navigate stairs with his PT hospital training, and gait belt and Fritz’ strength. He has dinner in the kitchen and sleeps in the lower bedroom with Fritz to help him go to toilet.
16 Jun: While LLH is doing home-care errands, Fritz bathes and dresses Papa with difficulty since legs don’t flex or bend easily. Papa falls backwards in bedroom while Fritz is putting on his pants, despite belt and standing in walker—hits head on corner of low drawer. Fritz feels terrible, of course.
Early that afternoon we see the liver biopsy results which show more tumors caused by prostate cancer, not treatable. We call hospice and Dr. Jahagirdar calls to come out and meet with the family. Jack is sitting in his library desk chair and asks good questions. Bal believes we should have a commode chair for Jack and consider building ramps so Jack can go outside.
That evening Jack visits the kitchen for what turns out to be the last time. He discusses Malthus and Marx with the grandsons, then requests pillows to lie his head on the table. He can only walk with assistance to the main level, so sleeps with Fritz in our master bedroom.
17 Jun: Fritz helps JGH out of bed at 3:30AM and Jack’s legs cannot support him so Jack slumps to the floor. He adjusts the 2 shower chairs to make a stair-step configuration to lift Jack to the first, then second then bed. At 9:30AM admissions nurse, Denise, from HP Hospice admissions evaluates us and Jack, and says she will get us a hospital bed where he will stay until death. We are relieved…and sad.
Garden workers arrive and help us move furniture out of library to the lower level; we clean out drawers for supplies and round up sheets etc. At 4:30 equipment and pain medicines arrive. Five men get him into a wheelchair and take him from our bed to his death bed. Fritz leads our care team but we are clumsy. Gabriel Sanchez, whom Jack likes, sleeps in the library too, on the massage table, so Fritz can get some sleep.
18 Jun:. Jay, Judy (&Katie) and Janice visit Jack to say goodbye. He makes intermittent conversation.
19Jun (Father’s Day): Visits by Jay, Sewells and Janice, followed by a productive meeting with Erin the social worker and Anita Sok, home health aide who gives us well needed training from All seem very pleased with our setup and care (a theme repeated by each hospice team member). Hough/Muschewske come mid-afternoon to show us plans for cemetery plot black granite bench; Jack converses with them and endorses artist’s design. Philip and Carolyn Brunelle arrive and he plays Cole Porter medley: boys and LLH dance in library, and Papa dances with his hands and applauds.
Throughout his time post-hospital and in hospice the grandsons play their violins for Papa. He always responds happily to their presence and gifts of music, singing and playing, and speaking to him. He silently claps with his hands, initially. Speaks their names.
20Jun: Meet Christi, Jack’s hospice nurse, and social worker. Christi evaluates Jack, who is mostly asleep/unconscious, and suggests per his health-care directive, that it is time to withhold food and water since he has days to live. I send out a note that we will host no more guests, it’s just the immediate family for the duration. Fr. Kevin McDonough gives Jack a final blessing with oil.
21Jun: Christi visits and ups the pain meds for the 2nd time, with hospice doctor approval. Notes decline of JGH from day before, although his inherent strength and health will probably slow down his death. Hills appear for a visit, followed by Don and Bev Oren. Jack converses with the latter and said this is a “poor farewell.” Claire N brings dinner; Teresa O. will supply us the rest of the week because by end of day we are all pooped.
22Jun: Jack’s decline continues. I read him poetry and change music to Bach, calm. Christi and Health Aide visit and the latter changes bedding, as well as bathing and changing Jack. Boys play music, sing etc. Kristen swabs Jack’s mouth. Lungs are rattling. Blood 02 is in the 70’s. Jack dies at 9:25PM.