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New!, Important!, The Experimental Life in Its 9th Decade!
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For age nearly 89, I have been healthy, thanks to good parents, affluence, and good healthcare. But now I face medical problems due to risky behavior and aging. Also I am a “stranger in a strange land”, i.e., a USA passport-holder, living expatriate in Yokohama Japan, with no family member but only hired acquaintances to assist me.
The year opened for me with two worsening medical problems:
1. Spinal atrophy causing weakness of lower extremities, and sensory loss, caused by collapse of the lumbar-sacral vertebrae due to osteoporosis and from a lifetime of poor posture and frequent accidental falls; and, complicated, since first seen on imaging in September 2021, by a tumor mass on the left side of the lumbar-sacral area, almost certainly malignant and with apparent metastases in each lung.
For my medical professional readers, here is a paste of the report, well before the tumor was seen:
Date: Tue, 13 Oct 2015 17:52:48 +0000
Lumber bone MRI early 2017Left-side deviated scoliosis is present. There are compression fractures in the L4 and L5 levels, with the irregular bone edge. Whole lumber bone shows severe deformity. At TW1/TW2, there is a strong signal enhancement, especially in the lower part of L4 and upper part of L5, suggesting a Modic type II deformity. There is also Modic type I deformity in the upper part of L1 and L2. The whole lumbar area shows severe stenosis, creating a stenotic intervertebral foramen (especially at Th12/L1 and L1/2-L3/4 on the right side, and L4/5 and L5/S1 on the left side). These changes are similar to that in the previous study (in 2014, Dec 8). At the L3/4 level, there are perineural cysts near the intervertebral swforamen. Likewise, other things 3 perineural cyst is present at the sacral bone level. Both renal cysts are also seen.
Final Diagnosis: Spondylosis deformans
Symptomatically, it has caused mostly low back pain but by 2019 a definite spinal syndrome developed.
Most prominent and disturbing is an obvious atrophy of the anterior thigh muscles, chief of which are the quadriceps femoris. It causes difficulty in lifting each foot and thus weakens walking and support of the body, and I can now barely walk and only with a walk-wheelchair, without which I cannot even support standing up.
Along with the muscle atrophy, I experience a stocking&boot paresthesia (loss of touch) extending to just above ankles. It does not involve pain or temperature. I also have anterior aching soreness pain extending down from waist and bilaterally symmetrical except left ischial tuberosity (part of butt you sit on) which has episodic point pain.
It suggests compression of the low spinal cord caused perhaps by the lumbar stenosis as part of my L-S vertebrae collapse. And, perhaps, the ischial pain is from metastatic bone lesion.
2. I have a prostate that has caused dysuria, frequency, and poor urination stream. There was a many-years, low-grade obstruction at the prostate urethra causing a thick-walled, low capacity bladder with ineffective detrusor function and hyperactive internal urinary sphincter. My urination was a drip-drop with poor control and spasmodic dysuria.
On 01 Octr 2021 after a night of extreme small-pee blood- tinged urinary frequency, my urination blocked, and I needed insertion of Foley catheter, size 14 (circumf. 0.462 mm, or 14/77 inch) in the ER, and the catheter was left in place and managed at home for the rest of the week. On 08 Octr, I was admitted to hospital urology to manage removal of catheter.
Since then I have again needed continuous catheterization and also developed a complication, hemorrhagic cystitis, where bleeding from the irriqtated bladder may cause blood clots that block the catheter and also cause anemia. This needed hospitalization w. continuous bladder irrigation but no blood transfusion. By 20 Dec. the bloody urine was finally clearing and on 22 Dec. after 61 days of continuous bleeding into the bladder, my urine became clear yellow.
On 05 December in AM, the home doctor replaced the size # 14 catheter with size #18 (larger; 0.594 mm circumference, c.1/4 inch catheter) to prevent block by clots.This is a serious complication of permanent catheterization. Why it happens is a mystery but probably involves low-grade infection. In my case continuous Augmentin 250 mg a day and high ingestion of vitamin C as powder crystals to render the urine highly acidic seems to have supported recovery by preventing infection.
Catheterization is sharply discomforting but takes less than 30 seconds. You have it done because can’t pee and need to, agonizingly. Also, need it because your obstruction causes you to pee in very small drip-drops too frequently. Once you have a catheter in you, you need to unplug and empty it every few hours unless by it is attached to a collecting bag While in place it can be uncomfortable with spasms around the penis.
The spasms became a major symptom. Here are my observations that should be helpful to all with continuous catheterization: First to describe; the spasms start with an unpleasant spasmodic feeling in the distal penis, then include the rectum as though you need to empty your bowel; they last a minute or two, their frequency depends on several factors. The major cause of the spasms is the stretching effect of the catheter. Other enhancers are movements of the catheter, obstruction of the catheter, and the mental effect of just thinking that the spasms will come. Preventives are securing the catheter with skin tape, using the correct catheter size, and anti-infection measures such as sterile technique when handling, and antibiotic Augmentin 250 mg 3 to 4 times a day is the best preventive against catheter infection because of its “double whammy” (amoxicillin and clavulinate) combination. Also daily irrigation with sterile solution. I have not found any medication helpful except perhaps 2% Xylocaine ointment liberally applied around tip of penis and catheter where it enters penis.
But the catheter is a great convenience because you no longer need to get up to pee at night. The big worry is blockage from blood clot. This is prevented and treated by irrigation and also by selection of wide enough (larger number size) catheter. Another risk is infection to kidney, prevented by the antibiotic, sterile handling and smaller size catheter.
Each patient‘s urination pleasure/pain has unique aspects. The commonality of mine is that it is on a continuum ranging from the extreme pleasure in peeing one gets on first use of an opioid to the low abdominal, suprapubic agony of obstructed urination with an overfilling bladder. My pains include a soreness of femurs and of the left hip-joint and point pain in the left ischial tuberosity and sacral eminence, particularly while sitting. These wax and wane in no pattern. Occasionally they can be very bad, At worst, they need codeine 60 mg (at home; in hospital, Pentacozine (Sosegon in Japan) 25 mg substitutes for the codeine) and acetaminophen 300 to 600 mg. That is included in a single dose which may be needed 4 times a day.
I have also noted the development of an irritable dry cough that comes and goes and that I attribute to the lungs metastasis but also may be side effect of the anticancer medicine.
I was discharged home with catheter, Sunday, 14 Nov.
I care for myself at home, but by now I am aided by many home helpers from the nurse-led social welfare section.
On Wednesday, 17 November, I consulted, oncologist
Here is the gist of the plan. He is now certain I have prostate-origined carcinoma. (Previously a question of bone cancer existed.) but suspects it is the rare neuroendocrine type which has poor prognosis and poor response to hormonal therapy. But, to definitively diagnose, it needs single-procedure, 15 core-needle biopsy through rectum.
The 15 core-needle samples are necessary because this is a multi centric cancer and thus easy to miss on single or even a few biopsies; hospitalization is necessary because of frequent serious complication rate: hemorrhage, infection, inflammation, fistula, etc. I signed all permission and said to myself: “Anchors away and full speed ahead.”
I also started the anti-androgen, anti-advanced prostate cancer medicine, (Abiraterone acetate aka Zytiga in Japan) four 250 mg tablets once a day on empty stomach, that I take with 1 prednisone tablet before and after daily. It is a very expensive drug. About $170 a month that even with insurance you pay out of pocket. Controlled studies show a 14-month survival advantage in advanced metastatic prostate cancer.
Japan has an extensive home care program for old people which they (I too) pay for by monthly deductions from one’s bank account. Now I start experiencing its benefits with nurse, aide, doctor and pharmacist coming to my flat to clean, check me 2 or 3 times a day (4 aides this morning), set my medication and even shop for me. And expert foot care too! It’s wonderful. An example of the efficiency of system was my problem night. I lay down early last night but noted I had not put out any urine from catheter into bag. The catheter had become obstructed, a potential catastrophe for me alone at home. Then I remembered home care. I called the point nurse and she immediately despatched a treating nurse who arrived in 40 minutes and solved the problem.
On 06 Dec. 10am, I was admitted Ward 6E, 4-bed 615 for transrectal biopsy of prostate next morning. My preliminaries had already been done outpatient. Japanese university hospitals have 6-, 4-bed, and single person rooms; the 4- and 6-bed are mostly covered by the national health insurance; and the single you pay c.$300 a day.
Next morning I was NPO (nothing by mouth). At 9 they took me to the surgical suite. At 9:30 I was put to sleep and awoke aat 10. They said the biopsies were a success and result the week starting 20 Dec. (I won’t find out until I visit my oncologist 27 Dec.) I was discharged home next day ( 09 Dec.). I noted how weak I was, and the thought I’ll die soon re-echoed thru my mind. But now with my end near, my mind, clear also said “Every day is a mitzvah.” (Yiddish: a gift from heaven!) In the words of the great Alfred E. Neuman:
What! Me worry?
My Milieu is important to describe here. My keepers (the social insurance persons: nurse, social worker, private org. manager), in the preliminary meeting evaluating my need for home care, asked me the crucial question: “Where do you wish to die?” Sitting in my Simmons chair in the NW corner of the living room of the flat I’d lived in for nearly 21 years, I answered “Here!” With a sweep of my right arm. It is a so-called 3 LDK (3-room, Living room, Dinette and Kitchenette), typical for a small, middle class Japanese family, with a terrace, on the 8th floor overlooking, to the south, the Yokohama Station (Yokohama Ekimae) area.
This living room, c.12 by 10 feet, NW corner, sitting in Simmons chair c(hinged chair with arms, can recline to c.135 degrees) is my living space for the weeks or month of remaining life. I cannot easily walk around but need an Aide to assist and to wheel me to toilet or washroom. About my excretions, my catheter takes care of urination but I am very constipated from the opioids (pentacozine and codeine) I take for pain. I am visited 10am and 9pm by a Aide who takes
me to toilet, cleans and checks. A nurse comes at least once a day to check my vital signs and irrigate my catheter to clear it and prevent clot. A physician comes twice a month and also a pharmacist who brings the physician-ordered medicine.
What do I do with myself? Except for times when nurse and Aide work on me I sit in my Simmons chair. I gave up lying down at night because it is a struggle to stand up in morning. So I catch sleep in my chair extended, thinking with gallows humor; I’ll have eternity for sleep.
I read in an organized way. It means a chapter a session but read only when I feel like it. My family and admirers send me books—-Asimov’s three Foundation novels, Steinbeck’s Tortilla Flat, Dostoevsky’s The Gambler, Tolstoy’s Family Happiness, Oscar Wilde’s The Picture of Dorian Gray—-and I read critically pencilling notes on pages.
My daughter asks me to edit her fiction and my doctor to edit and proof his scientific papers. Then I philosophize, which means commenting in my mind, sometimes out loud on people and things. At night I doze at intervals in my 135-degree extended chair. My management of time is that I treat each portion of a day like an eternity.
Eating: I eat well from convenience and supermarket brought by my Aides on order. I eat and drink from combination of pleasure and good nutrition. So, for example a take-out N.Y. steak to build up blood and lots of soda sundaes and strawberry shortcakes. For easy eating cup noodles and ramen. Oh I am well nourished and food & drink pleasured. It’s like the condemned man’s last meals. Recently though, I prefer not put stiff in my stomach and now I am living off Dr Pepper’s canned Soda (Love that prune Soda taste) and canned tangerine with occasional spinach soup. My days are running out to hours, minutes. But! What? Me worry? I go the world on a string that soon will break.
On Monday, 27 Dec. my doctor will give me double subQ abdominal injections of Denosumab, 80 mg (Degarelix in Japan) the latest monoclonal against metastatic prostate cancer. Hope it works! I am really enjoying my limited life.
To continue.
