Thursday, July 3, 2014

A Long Month Was June

Not having posted in a month, an update is in order.  Lupron slammed me hard in June. By the second and third weeks, the side effects (noted in last post) increased dramatically in intensity to the point where I couldn’t work.  Having been virtually bed ridden for 2 and a half weeks and lost 13 pounds, I’m only the last 4 days or so beginning to feel at all close to normal.  I had 2 visits to the oncologist office this week.  The first with my regular Onc, Dr. Kasper.  He allowed as how when you decimate the testosterone of a “younger” man (i.e. 50’s as opposed to 70’s and up), they tend to get slammed by it as they are usually producing normal levels of the hormone.  Indeed, my tests over the last few years had always shown that I was in the mid to high part of the “reference” or usual range for adult males (221-716 ng/ml).


But with Lupron, they’ve knocked my testosterone measurement to 12 ng/ml. That’s twelve as in 12 more than zero.


So I have almost no male hormone coursing through my body.  Almost none.  At all.


The good news is that the tumor has likely shrunk and the metastic cells in my lungs have likely been reduced or eliminated as its testosterone that feeds prostate cancer.  The bad news is I feel as weak, shakey, achy, not normal, depressed, hot flashey (yet easily cold at the same time) and just all around blech as I’ve ever felt in my life.  This has been nothing short of disabling.


To add to this, Lupron can cause about a fairly high percentage of men to develop gynecomastia, or enlargement of the breasts, that is accompanied by pain in the tissue.  The only preventative is mild radiation treatments to the breasts which seems to kill or at least turn off estrogen receptors in that tissue.  Not needing additional pain and realizing how further depressed I would be should my usually fairly well defined male chest become feminized, I decided to pursue that treatment yesterday.  The radiation oncologist D and I spoke with was well experienced, sincere and knowledgeable.  He was also the 5th or 6th physician to refer to the gravity of my “high volume” disease.  He’s only seen it once before back when only estrogen was used to deal with PC and that patient “just melted away.” 


His comments pushed me on my decision about pursuing chemo.  The regular Onc’s assistant had called about and mailed me a federal study on men with advanced PC taking chemo in the first four months of hormone treatments having and extended life span of approximately 1.5 years.  It’s 18 weeks of treatment, once every 3 weeks.  I can expect hair loss, nausea/vomiting and knocking down my white blood cell count for a few days after every treatment.  But there seems a strong likelihood it buys me a year plus.  Seeing as how I’d always envisioned myself as a cranky, mischievous old guy some day, I’m gonna buy the year plus, nausea et al be damned.


I’ve had relatives and friend send me info about consuming nutrient rich juices made from “15-20 lbs” of organic fruits and veggies daily.  While I get it and understand the theory behind it, the truth is, I can neither afford nor do I think I could down 20 pounds of organic fruits and veggies a day.  The best I can do (and have been doing) is to up my consumption of these daily with what fits in the budget and appetite.  I’ve often enjoyed mixed berry smoothies for well over a decade, so this is not new to me.

Finally, Derrell remains by my side in this fight.  A solid partner.  He’s thankfully had no further seizures since May 30 so it appears the medication he’s taking is working as intended with few side effects.  The love and support I feel from him, be it accompanying me to Dr’s visits or bringing me water and blueberries when I was in bed or simply holding my hand, is remarkable and comforting.  I may have never won Powerball or MegaMillions, but I won the relationship lottery somehow.


That’s all I know today.


  1. Scott,
    Your last sentence "I may have never won Powerball or MegaMillions, but I won the relationship lottery…." that's what Pat and I have often said to each other. A deep and loving relationship is so important, especially at this time of your life while you're undergoing these medical procedures. My heart is with you Scott as you face these almost unbelievable challenges every day for medical treatment. My prostate cancer has stabilized (thank God) but one never knows. It is ironic that you also wrote "Seeing as how I’d always envisioned myself as a cranky, mischievous old guy some day…" I am that guy. I never expected to reach the age of 72, never. I never thought I would make it past 60. I often discussed longevity with my longtime friend Bob Mc. Unfortunately he is now in a full care nursing facility with full blown dementia or Alzheimer's. He's wearing a diaper, can't talk, grunts and looks like Frankenstein and is a skeletal version of his former self. Bill and I just celebrated 50 years together on July 3rd. Bill will always be with me but he is 85 years old. One of my biggest fears was that I would outlive him and when I got sick and dying, which I will, we all do, I would be alone. Now, thanks to the whims of fate, I've met a wonderful man named Pat. He is 65 and he is literally the man I've been looking for all my life. I know this all sound complicated (life is), but I will never leave Bill but I am so happy and thrilled that I now also have Pat in my life. I often kid him that when I'm sick or dying, I won't be alone. I've told him that if I'm ever in that condition, just hold my hand and help me make the Journey.

    I am so happy for you Scott that you have Derrell. I'm not going to offer you any advice about your medical condition or treatment, I only hope for the best for you. That your treatment is as comfortable as possible for you and enables you to spend your precious time with the love of your life, Derrell. My thought will always be with you Scott.

  2. By the way Scott, I see you did this posting on our (me and Bill's) 50th anniversary of our meeting and our first "official" wedding anniversary (he got married for real last year in Georgetown, Delaware. Have you and Derrell gotten married?

    1. Hi Ron:

      As always, thank you for your warm words of support. Derrell is indeed that special person that I'd always hoped for and imagined being with. When we first got together 3+ years ago, a number of people thought our unusual relationship was a passing thing. I think wee both knew rather quickly that it wasn't. We just clicked. Ever since, we've been each other's biggest boosters. He's been to virtually every physician appointment I've had since all this craziness began 8+ months ago, lending a second set of ears (with medical knowledge)to what I'm being told. He understands and is supportive when I say I'm just too wiped out to go do ______________. And, as mentioned before, sometimes he just holds my hand. In answer to your question, we are engaged, but the trip to SF to get married was postponed a bit while I dealt with some of the medical stuff, but it's still on the agenda.

      Life's a funny thing. Nine months ago we where in San Francisco celebrating, walking all over the city (including UP many hills!), making sweet love, playing tourists and living large. Now, with virtually no T, I do good to make it through 8 hours of work in my rather sedentary job.

      By the way, my envisioned "cranky, mischievous, old guy" is in his 80s or 90s. I still think of early 70s as relatively young;)

      I appreciate you Ron. You've been a consistent voice of support from the beginning. I hope that D and I make it on a long talked about trip to NYC. Perhaps we can all meet.

      Best wishes,

  3. Scott,
    I am so happy for you that you have Derrell. I see so many people who are alone in life and I feel for them. There is one man I know here in Delaware who has serious health issues (leukemia) and has to face his crises alone. I ache for him. He writes a blog (which I had encouraged him to start six years ago after his long time partner (31 years) broke up with him. I have so much admiration for him because he doesn't complain, he just states the facts and how he is coping but oh how much easier his situation would be if he had someone with him. By the way, his blog is "On Transmigration" if you're interested. He writes well and I think by his writing about his situation he's helping others.

    Scott, keep writing your blog when possible. You and Derrell are in my thoughts.

    Your friend,