Friday, January 19, 2007

Where I Am Now

About three months ago, as many of you know, I was diagnosed and began treatment for prostate cancer (PC). I have been virtually pain-free since that time, suffering only occasional cramps in my penile region which I’ll explain later. I’m basically inactive now though I have begun a walking and diet program to handle my weight gain since hospitalization.

My emotional life soars presently as I feel the tenderness of love newly embracing me. All this and more in this edition of Brittleliquid’s Journey.

Let me first explain why I use the term, “Brittleliquid” in the title of this blog. I invented the word about 25 years ago to describe what glass is. I was working heavily in stained glass at the time and wanted to name my newly formed small business. I new that when glass is made it is in a liquid form, albeit at about 1200° Fahrenheit. When glass cools to room temperature it is brittle, requiring thoughtful handling to keep it intact. Hence, I put the two words together and came up with “Brittleliquid.” Fairly rolls off the tongue, doesn’t it?

When I was first tagged with the label “Prostate Cancer Sufferer” I admit I was devastated. I spent a lot of time “woe is me’ing” and crying uncontrollably. I felt so sorry for myself. It wasn’t supposed to be this way, that I would end my days eroded by cancer, slipping away in a painful or woeful demise, tubed-up and incapacitated. At least that was the way I perceived this illness. I had not paid much attention to my prostate even though in my 50’s; the proclivity toward the cancer is remorselessly high in men my age. I had some signs of the disease over the past few years—frequent urination, slow spill and even some erectile dysfunction. Yet, I attributed this to the damage my Type II diabetes inflicted and left things at that.

As my urinary troubles intensified—I going five or six times a night—I got to a point where I was so tired from working all day and sleeping so badly at night that I stopped eating regular meals. I came home at 5:30pm and went straight to bed. My weight dropped and my belt was getting more notches as my waist size decreased. Gee, a happy coincidence but, I was paying a heavy price. As my date with destiny and hospitalization neared, I ate less and less, maybe yoghurt in the morning and a saimin soup at night. I just didn’t have the strength to prepare anything more than that. I had little taste for much, not even fast foods.

I landed a job a few weeks before all this at Hawaiian Telcom, the local phone company. There, I worked in the business customer service section which was floundering under poor performance. I was assigned to collect data on customers’ missing invoices and made a few suggestions as to how to do it better. I was immediately placed in charge of the duty and had two people working for me in a matter of a couple weeks. The pay was good--$20 per hour—and the people very accepting of me as a “newbie.”

About three weeks into this assignment, I began the suffering stage of the combined effects of diabetes and PC and started calling in sick. I just couldn’t get out of bed; I was so tired and weak. I slept most of the day and by night time, I was wide awake and couldn’t fall asleep, though I was very much fatigued. I might make it in to work the following day but, by the end of the day, I was so whipped I didn’t know if I would make it from the bus stop to home, a mere 200 yards away. The routine would engage itself again and I might make it in the next day or I might not.

By the time I signed myself into medical care, I even went to a Chinese doctor to see if he could figure out what was wrong with me. He took my pulse and said something in half-Chinese and half-English which my friend, Miss Chinatown (really, Sonja Wong) translated as, “Your cholesterol is very high.” He took my pulse again Sonja translated his next statement as, “You have arthritis in your left hip.” I could be sure of pain in my left hip; it came and went over time. He told me to pay him $7.00 cash for his consultation and to get my prescription in the front of his store. I did both, leaving with two packages of twigs, bark, roots, bugs and seeds and the directions to boil each one in 5 ½ cups of water down to one. The bus ride home took almost 2 hours in the evening rush hour and I was woozy most of the way.

At home, I told my landlord of the boiling directions and he went ballistic. “That’ll take two hours or more of electricity!” As his electric bill had been increasing monthly, largely due to the company’s fuel costs, he was beside himself with a deliberate increase in kilowatt hours. Nothing about whether this “tea” might be any good for me, just concern for more money to be spent on utilities. So, I paid him what I thought two hours was worth and started boiling. I drank this incredible-tasting mix later and I can say it settled my stomach somewhat allowing me to eat some of my landlord’s local cooking, which was always fabulous. The next day, he boiled the second package for me, perhaps embarrassed that he was unreasonably upset at the prescription’s requirements. Strange that he would challenge me on this as he was local, even had some Chinese in his background and knew what was needed to use this medicine.

All that was moot as the very next morning I made my to Emergency at the local hospital.

During my three week stay at the hospital, I endured five medical procedures; three involving my prostate and two involving my kidneys, which were operating at about 50 percent when I was admitted. Two of the PC operations were to obtain specimens for the lab to determine the depth of my cancer; one was to reduce my body’s testosterone levels—thought to feed the PC. My urologist came in to talk to me and said what I remembered as “Gobbledegook, gobbledegook, gobbledegook and sign here.” I tried very hard to concentrate on what he was telling me but the administered drugs affected my concentration. I had three Playboys’ at my bedside and I couldn’t turn the pages, much less lift them to my bed tray. I barely understood what he was saying now that I recall and had no one to sit with me as these procedures were described. I signed the releases and headed off to surgery or x-ray.

There was one release, however that really punched me hard. The medical term for this was “orchidectomy.” It was necessary in order to drastically reduce the effects of testosterone which was thought to feed the PC. I found out later that testosterone, if indeed it was the guilty party, was also produced by the adrenal glands. I wondered later whether this particular operation was really necessary but, my urologist spoke to me again in “gobbledegook” and I signed where indicated. I was not totally unaware of the central effects of this orchidectomy and, at my age, I figured baby-making days were over. You see, the word breaks down like this: “orchid” is the substitute word for testicles and –ectomy means removal. You understand I’m sure. By “cutting my nuts, the family jewels” I was now on hormone therapy. No more testosterone, no more cancer was the thinking. It was either the “snip” or chemical castration costing $900 per month for pills, ingested for months. My urologist’s way was “quick and dirty” and results would likely be immediate as measured by my PSA blood levels; high is bad, low is good. Mine measured at 48.5 just before I went in for my first operation. Two months later it was at a 5 though best is less than .1. Maybe these “medico’s” were on to something here.

I did find the side effects of lowering my testosterone rather deep and challenging. Since my female hormones were now running rampant in my system, unchecked by a balancing male hormone, I underwent some interesting changes. I cried at the slightest whiff of an emotional scene—weddings, children smiling and hugging each other or flowers offered to someone for no reason at all. Suddenly, I started watching soap operas and didn’t miss an episode of “All My Children.” I watched and wondered why men couldn’t be more like the ones on daytime TV. Oprah Winfrey was my heroine. I started shopping for shoes, did my nails incessantly and asked my housemates if my jeans made me look fat. I cleaned the bathroom twice a day and hung curtains everywhere. I fussed at the others if they didn’t come home in time for dinner… In short, my feminine side was coming on strong from the lack of testosterone.

When I told that story to a group of PC sufferers at a recent support group meeting, the men shifted nervously in their seats, looking down at their hands and one actually asked me, “Dick, did all that really happen?” He was visibly relieved when some others assured him I was joking.

Presently, I’m feeling fine with no pain anywhere. I pee normally, better than normal really, more like a five year old. My urine exits with such force I can write my name in letters 6 feet high on blank walls and not use my hands to direct the stream…

Other than a mild weight gain since I came out of the hospital and my primary care doctor’s admonitions about that what is coming up is another check with the urologist. He says that the two plastic tubes in my back that deliver urine from the kidneys to the bladder need changing in about two months. These get “crudded up” (another medical term) with waste material and slowly restrict urine flow. Apparently this procedure will be a challenge as he has to go through my penis and the bladder to replace these tubes with new ones. Get this: he says I won’t actually be in the hospital; we can do it at Burger King since they have wide tables. What he means is that I’ll be an outpatient; you know, drive myself to surgery and back home all in the same day. Yeah, right…

There’s been little talk of a cancer doctor visit, so far. Prior to this upcoming plumbing job, I’ll get a full body scan to see how far the cancer has progressed into my bones—ribs, pubic and spine. If the results of that are scary, then I’ll see this third doctor and talk about the favored treatment, radiation, either in rays or in imbedded pellets. Chemo is not in much favor as it tends to kill living things like people as it does its work.

Along the way, I’m researching PC as best I can on the internet and in books. I’ve attended two PC support group meetings, called “USTwo,” since November (none were open during December) and have come away with some perceptions that won’t go away. The first is that most of the men in these groups are in their 70’s and 80’s. The second impression is that most of these patients know more about PC than their doctors do. Comments from these attendees lead me to believe that PC is not “sexy” enough for most oncologists—at least in Hawaii—to spend a lot of time working in this arena. The big bucks go to leukemia, breast cancer, lung cancer possibly because typically younger people get this stuff. Too, since urologists are the first to be consulted about PC, and their expertise is the urinary tract, few understand the treatment methods that could kill this thing off once and for all.

I’m still new at this thing but I am looking for other methods of treatment, including what is called “clinical trials.” In these, new methods or medications are tried out on a select group of people to see if they will work. Typically there are several criteria that must be met or one cannot enter these trials. For a Honolulu clinical trial, I must have failed to respond to other treatments before consideration.

Additionally, diet and exercise are being touted as of some real use. The diet part is total vegetarianism including lots of juicing, particularly with spinach leaves. I’m juicing several times a week, adding carrots, fresh ginger and an apple for sweetness. I’m eating more salads, too. For exercise, I walk and jog for a half-hour at a time. I drink loads of water and take an occasional multi-vitamin. We’ll see how this works out.

When I was first diagnosed, I was given six months to live. My urologist said that whoever told me that was lying. In his opinion, I had a whole year…! As I’ve mentioned before, people associated with healing told me I had least 20 years. I decided to live as if I had those 20 years and did two things: I went to an awards ceremony honoring me with the “Fickle Finger of Fate” prize (for those who fate intervened into an otherwise normal life) and told the audience of my plans. Many had young children, even babies with them. I said, “on the anniversary of my 20th year of survival, my goal is to be in bed with a 20 year old woman who is hot, wet, satisfied and happy to be with me. I’m looking around for a candidate and she may well be here in the audience tonight!

The second thing I did, with my new-found confidence, was to make my girlfriend into my fiancĂ©e. I asked her to marry me just before New Years and she said yes. My friends were ecstatic and supportive and full of gladness for me. My family, on the other hand, said, “Marriage? In your condition?”

You can probably guess my response.

Until next time,

This has been another episode of Brittleliquid‘s Journey.