Sunday, May 18, 2014

My 2 New Jobs, Lupron, D's Health, Chronic Pain and Acceptance

It's been a month since I posted.  I took a break for many reasons, chief among them was that having cancer becomes another 2 jobs added to an already busy life.  I already had a busy, full time, 50 hour a week job (which I'm enormously grateful for), a part time catering gig, a fulltime, wonderful relationship and then there was a few hours downtime and 7 to 8 hours sleep a night.  With a cancer diagnosis, you add the "job" of having to become an expert on your disease as well as the "job" of dealing with the billing/financial aspect of the situation.  My bandwidth was overloaded.  It remains overloaded. Something had to give and the blog was it.

I decided to move forward with the hormone "therapy" (I have a hard time thinking of the removal of my testosterone as therapy.....but that's what it's called) and had a 4 month duration injection of Lupron (billed to insurance at a little over $4,000.....cancer is such a business in this country) about three weeks ago.  So far I've noticed that, while I'm not having hot flashes, I am having extreme sensitivity to heat and cold.  Many nights I find myself soaked in sweat and if I get chilled in the slightest, I begin to shiver uncontrollably.  I also have begun to have chronic pain in my joints and bones, particularly my chest wall. This is a daily, ongoing pain that at times rates a 7 or 8 on the 1-10 pain scale anyone who's been to a hospital is familiar with.   So we add that pain to the Levatar syndrome pain in my lower abdomen as well as the slowly receding pain of the multiple lung biopsy incisions. Without constant use of pain meds, I'd be unable to function well if at all........and this is just the beginning? I have days where I just feel it the Lupron or the cancer?  I'm not sure. There have been two episodes of intestinal distress with massive dry heaves, side affects that I've read about on other sites such as and I can say, thankfully, that my sex drive and function has been minimally at least there is that. But I also understand that Lupron works gradually, increasing in effect after the first few weeks, so there may be more that's in store for me. It will be interesting to see in 3 months if the growth of the tumor and the nodules in my lungs have been slowed or, possibly, reversed.

As if my diagnosis wasn't enough for Derrell and I to deal with, the most frightening thing happened a couple of weeks back.  Derrell suffered his first ever (and we hope only) seizure.  I'd taken the week off (fortunately) and was working on my computer at the kitchen counter.  D was putting clothes in the washer and made a strange noise.  I looked at him and immediately knew from the way his face looked that he was having a seizure as I'd seen someone have one before.  I managed to get to him and catch him before he fell and hit the hard, tile floor.  An ambulance ride and 5 hour ER stay later, he was diagnosed with a major seizure and is now undergoing testing and diagnosis by an excellent neurologist.  The love of my life, my rock, my greatest earthly blessing was almost taken from me and now has his own health concerns to deal with.  I hug him and hold him even tighter now.  This is likely something that can be controlled and may never happen again, but the thought of losing him makes my heart ache.....but we're moving forward and supporting each other.  We're a team.  We're each other's support. We're each other's completeness.  I have never felt so strongly emotionally about anyone in my life. I shudder to think how bad it might have been had he been here alone.

Finally, after his health concerns arose, I had a night where sleep was not coming on so I spent a lot of time doing deep soul searching.  I'm moving to a place of acceptance.  I'd planned on a long life and had always joked that I'd just "nod off" at a party when I was 95.  Now that appears extremely unlikely.  I can't control the fact that I was struck with a rapidly growing, aggressive, virtually untreatable cancer. I can't control that I likely wont see 60.  And when life hands you things you can't control, you have to just let go and concentrate on things you can control. So I'm focusing on diet, frame of mind, my loving relationship and looking at what is good in life today.......because that's all I can govern in my life.

I appreciate the readers of this blog.  Having support from people you've never met is truly an uplifting thing.  Thank you.


  1. Scott,
    I am glad you're keeping a blog on your experience. I know it can't be easy for you with all that you have to deal with now but realize how important this is to others who may face a similar situation. It doesn't seem that long ago when I first "met" you when you responded to my Inspire posting about the pain and discomfort of a prostate biopsy. That all seems so small now doesn't it?
    Life truly is a roll of the dice. One never knows when we are face with life altering challenges. I so admire you Scott the way you're facing your situation. I just don't know how I would if I was in similar circumstances.
    I am so so sorry to hear about Derrell. I hope he is on the mend. I know this isn't easy for him either.
    I'm a year into my seed implants. My PSA has gone down from 8.4 to 1.1. I still have the inconvenient side affects but nothing I can't handle and certainly nothing like you're experiencing. My rock, Bill (50 years this July we're together) is going strong at 85. He's a little hard of hearing but he's healthy as a horse. In fact he's outside right now weed whacking.
    Please keep us posted Scott as to how you're doing. By blogging you're not only helping others but I think you're helping yourself by writing about it. I know blogging has helped me tremendously with my psychological problems, of which I have my fair share.
    Always think of you Scott and give me best to Derrell.

    Your friend,

  2. Wow, that is quite a story; quite a story. Sounds like you've been through Holy Hell these past few months. Makes me feel almost guilty about worrying about my own "simple" prostate cancer and recent RP.

    It's good you and Derrell have each other and I sure do wish that whatever Derrell experienced was just a once in a lifetime fluke and never happens again.

    If you are into changing your diet----I bought one of that MagicNutriBullets and it really makes eating a ton of fruits, vegetables, seeds and grains a hell of a lot easier since it pulverizes everything into one big gloppy slurpee of nutrition.

    It's good you're working. Having a job keeps you distracted from obsessing about your cancer. I'm retired so I have a tendency to sit and worry and obsess about having prostate cancer, 24/7. I'm in one of those " iffy " situations since I had extraprostatic extension, positive margins and perineural invasion. Who knows, I may make it through this, or it may come back to bite-me-in-the-ass in a year in which case I'll be on to "radiation-city and hormone treatment. Life sure is like a coin toss.

    I find reading a good book helps me to distract myself from my woes. I like reading about the Civil War and about slavery, I think because I'm always amazed at what people had to endure and suffer through back in the 1860's. It makes me feel I've had it pretty good, comparatively speaking.

    It helps to try to compartmentalize stuff in your brain so you can try to set certain things and thoughts aside in order to continue to enjoy the things you enjoy doing. Of course, that's easier said than done. And you're right; having cancer is like all of a sudden having another full time job suddenly thrust upon you.

    I don't even know who you guys are but I've been following your blog and your threads on "Inspire" and I sure do wish you and Derrell well. There's a lot of people routing for you----people you don't even know.

    James (from CT)

  3. Scott, thanks for updating--you have been on my mind a lot lately, and I've been wondering how you are doing. Glad things are going all right. Sorry to hear about Derrell's seizure--hopefully that's the first AND last of those. You know, as I read your post, I think of this: You, my husband, and others afflicted with a life threatening disease really come face to face with your mortality. In reality, however, NONE OF US know how long we have--we just have not been in the situation yet where we are face with an illness that could take us. Keep up only focusing on what you can control--to worry about anything more of that is really a waste of that energy you need to focus on LIVING. Again, thanks for posting. Please don't go so long between posts--I miss reading your writing! God bless you both! ~Leisa