Year-end Prostate Cancer Blog Summary
I’ve been recovering rather well and haven’t felt the need to write what I was experiencing. I wasn’t feeling normal, but I wasn’t feeling too abnormal either. I was just slowly moving away from the chaotic/static feelings I had experienced during chemotherapy.
Some of you do not care to know about my personal sexual aspects experienced during treatment. But because a prostatectomy followed by chemo and hormone treatments have such a major impact on sexual behavior, it would be like talking to you with an elephant in the room and not acknowledging it. How honest and realistic is that? Besides, how else are men going to know and learn from one another if they do not share their experiences? So, if sexual behavior is of no interest to you, skip a couple of paragraphs.
On Monday evening, May 29, during my sleep, I had a quasi-erection and a nocturnal climax. While dreaming this event, I found it even surprising that it was possible, and I “chose” to climax. Of course there is no evidence that such an event happened since the seminal vesicles were removed during the radical prostatectomy. Was this a phantom dream? The experience was on my mind for days wondering how this was possible after being on chemo AND androgen deprivation therapy for five months. Do nocturnal climaxes occur independently of testosterone levels? A resistance exercise program can increase testosterone levels, but my last workout at the fitness centre before the dream was on May 23—six days prior to the event.
While I was delighted about the event, I was also concerned that there must have been enough testosterone in my body to have triggered or supported the ability to climax (or have a dream that would support it). Perhaps that was not a good thing. I wondered if the deprivation therapy (the total androgen block) wasn’t working. If there was testosterone, there might be cancer cells feeding on it. This began to worry me.
In the meantime, life went on. Dr. West had said that the effectiveness of the sixth and last chemo treatment would wane by the end of the month. So, Elly and I went out for dinner on May 31 at the Wild Saffron Restaurant (Victoria), and celebrated with our first glass of wine since the end of December. We felt it was important to mark this date to celebrate what we had accomplished thus far (fairing well with the chemo and contending with the emotional baggage that goes with this condition) and to mark it as a new phase in the treatment/healing process.
The nocturnal events were still dominating my thinking as to why they happened. I called Dr. West (oncologist) to inquire about this. He was out of town at a conference. I emailed Dr. Lin (surgeon) with my query and he emailed back the following:
Regarding your nocturnal event and if it has any bearing on testosterone levels or impact on any prostate cells, the bottom line is that I would not worry. We know that erections are somewhat dependent on normal testosterone levels, but clearly men can have erections with low levels of testosterone. There are men that can have erections even with androgen deprivation therapy, but I will admit that it falls into the more rare situation. I would suspect that Dr. West has already checked your testosterone levels, and if not, he likely will check them just to make sure that you have what we would consider to be "castrate levels" of testosterone.
Obviously, I felt pleased and relieved.
Myles arrived in Victoria June 14, and the following Sunday we participated in the Prostate Cancer run/walk fundraiser here. It was a glorious day and I felt very gratified being a part of such a strong turnout for Father’s Day. How appropriate.
On June 21, enroute to Portland via Seattle to visit with Blaine and Cindy, I stopped at Swedish and had blood work to check my testosterone level. Dr. West called me at Blaine’s the following day to say the level was low as it should be. He reiterated Dr. Lin’s advise, “not to worry.”
Elly and I spent a week at Camp Sherman on the Metolius River in Central Oregon. We love this place even though it was at this place exactly a year ago that I got the call from Dr. Lin telling me that the prostate biopsy showed cancer cells. Afterward, we flew to New York City to attend a wedding and spend time with friends. We returned to Seattle July 13, and I had the third hormone shot and a scan to measure bone mineral density. Chemo and hormones tax bone density. I had had a Dexascan done on January 3, 2006, to establish a benchmark for my bone density. That scan classified me as having moderate osteopenia. Dr. West was on vacation July 13. I faxed him on July 17 as a follow-up to Nurse Ruth’s notes for that visit. (I had had two more nocturnal climaxes—still perplexed but pleased). He called immediately after receiving the fax and we talked a good while. He reported that the 7/13 scan showed no loss in bone density. I am very fortunate to have such incredibly responsive doctors.
Even though I was feeling good and told people I felt about 90% of my normal self, I had quite a few different physical reactions after coming off the chemo. I began having hot flashes at night, tossing and turning and feeling very hot, throwing off the covers, then searching to pull them on again. Somehow, I never felt like I lost much sleep from this. For some reason, these hot flashes happened at night with very few during the day. My sister-in-law Irene, who lives in Holland, suggested I take soy supplements. She is on hormones after breast cancer surgery and chemotherapy, and finds soy gives her relief from the flashes. I asked Dr. West about soy, and he sent me instead a prescription for venlafaxine to address the hot flashes in case I wanted to try it. The Physicians Desk Reference says that venlafaxine is “ indicated for the treatment of depression.” (It says nothing about hot flashes.) While it may be effective in eliminating hot flashes, I’d rather endure the flashes than to chance any change in my thoughts and behavior. I was engaged in some deep philosophical thinking about my life, and didn’t want to take anything that might alter the authenticity of what I was thinking. The discomfort level from the hot flashes was not high enough to merit such drug taking.
Here are other physical conditions I began experiencing at the end of May after having completed the chemo treatments.
· Muscle stiffness settled in my legs and continues even today. Each morning, before getting out of bed, I must stretch my legs and make the muscles limber before standing. If I don’t do this, I can only stand with knees bent, and in some mild muscle pain, while feeling too uncertain to stand upright in fear of losing my balance. If I stretch before getting up, the stiffness is still mildly present, but there is no balance problem.
· I had a bone ache that ran across the chest and terminated in both shoulder joints. I don’t know how else to describe this. The pain felt like it was in the bones. At the onset of this, I would awaken often with mild pain in both rotator cuffs. I had to reposition my arm in a comfortable resting place before the pain subsided. Lately, the pain is only in the right rotator cuff and it is always whenever I challenge the range of motion of that arm. I often sleep on my side, with my arm stretched above my head, with the ear on my bicep. At first, I couldn’t lie in that position with either arm, but now I can do so with the left arm only. Neither the leg muscle stiffness nor the rotator cuff pain disrupts my sleeping much. I wake up each morning feeling rested. I am wondering if the hormone treatment is depleting the testosterone by taking it from the muscles and bones, and thus making my body weak overall.
· The back of my ankles swelled at times and became thick. This has not been the case for a while.
· My chest is developing slight breasts.
· I’ve gained 10+ pounds.
· All of my fingernails and toenails were affected by the chemo. Some turned black. The fingernails of the second finger of both hands came off. All the fingernails have grown in nicely. The toenails are slower growing but doing fine.
· My skin appears to be aging quickly. When I look at my arms and thighs, the skin looks craggy and dry, and in some areas puffy or dented, as if it lacks some cellular substance that gives the skin a full and firm surface.
· My head hair is back and silver but much thinner on top. While my beard is growing back reasonably well, the moustache is sparse.
In discussing all the physical changes, Dr. West said men have varying reactions to hormone treatment. Most men are not apt to observe and/or articulate their changes. In my case, the first five months of hormone treatment were accompanied by chemotherapy. This is an unusual protocol. There are no data on how men respond to this treatment. Maybe this blog will contribute to the anecdotal evidence of what men experience.
It was in this 7/17 fax to Dr. West that I reiterated the supplements I was taking. Dr. West doesn’t have much faith in the effectiveness of so-called alternative pharmachemicals. They are not tested or regulated, and he thinks they can do as much harm as good. The combination of all the supplements I was taking might be harmful. More is not always good. Based on his concerns, and mine too, I pared down the list of supplements. I cut out the Vitamin E, Selenium, Flavonoid (green tea extract), and Greens Plus drink, but kept the daily Calcium (600 mg) with Vitamin D (200 IU), Multivitamin (Centrum Silver), and Vitamin C (1000 mg) along with the prescribed 50 mg of Casodex (hormone).
My diet includes plenty of the following: tomatoes (lycopene), nuts (vitamin E). flax seed (omega 3 oil) ground on cereal every morning along with soymilk and quark, fish, vegetables of all colors--both leaf, fruit, and root; fruits, especially berries; ginger; and turmeric (curcumin).
Dr. Lin is involved in research on broccoli. In my November 6 meeting with him (I am getting ahead of my story here), I asked about the broccoli experiments. He explained that the lab team is learning that the enzyme myrosinase transforms glucoraphanin, found in broccoli sprouts, turns into sulforaphane upon damage, such as from chewing. In the lab, sulforaphane is destroying cancer cells. Isothiocyanate, found in mature broccoli, is also destroying cancer cells. Both compounds look very promising as a cancer prevention—especially against prostate cancer, Dr. Lin’s specialty. Of course, I am eating lots of broccoli—sprouts and mature clusters.
On September 27, I had blood work and the fourth quarter hormone shot. My blood condition was good. Dr. West called me the next day to report that the PSA was undetectable, less that 0.01.
On October 2, Elly and I flew to Santiago, Spain, and met Judson friends for two weeks of touring western Spain and celebrating our 35th wedding anniversaries together. We were all married within several months of each other at Judson Memorial Church. After our friends returned home, we drove to northern Portugal for another week’s visit. Then we flew to Holland for a week to be with Elly’s family. We did fine with so much traveling and learned to take it easy and allow each day to unfold as we felt like it. Some days we just sat around and read. Some days we took short walks and long naps (the Spanish and Portuguese cultures strongly support both). We always ate well and had some excellent wines. I managed to get in a couple of afternoons of drawing.
We were back in Seattle, Portland, and then again in Seattle on November 6 to meet with Dr. Lin. This was a one-year follow-up after surgery (September 14, 2005). I was pleased to report that my urine control is very good. I sleep through the night. The flow is steady and strong, and there is no leakage except on rare occasions with the release of a droplet resulting from involuntary actions like a belch or hiccup. Although the libido is active (I still have sexual stirrings and desires), I have not had any more sexual climaxes since mid-September. I think they are out of the picture for the time being and maybe forever. Dr. Lin said he has another patient with a medical profile similar to my own. Since I am “breaking ground,” he said he would inform him of this blog.
The question of “What Next?” still looms large. I am just taking one day at a time and enjoying it. I am grateful for my family who is very supportive and normal in dealing with me. We don’t have our heads in the sand, yet on the other hand we are not intimidated by adversities. We deal with whatever comes, and get on with our lives. I have good friends who affirm that I am valued and loved, and I participate in a reading group that challenges my thinking about spiritual matters. I am blessed in so many ways. Blaine and Cindy are expecting their first child in February, and we will all be blessed even more.
If any of you readers are interested in talking about prostate cancer, I am available at firstname.lastname@example.org and 1-250-382-4530. Happy holidays to you, and may we all encourage and nurture prospects of hope and peace for the entire world in the coming year.