Friday, May 30, 2014

Good News Mixed With The Worrisome

I got the PSA test results today and my PSA levels have dropped to 3.19 from the 5.2 they were at in January.  This means that the Lupron is working so I can at least take comfort in the fact that along with the skeletal pain, the fatigue, the decrease in sex drive, the increased sensitivity to cold and heat,  the nausea and dry heaves, comes a decrease in PSA which should signal a slowing or reversal of tumor growth.  This is indeed encouraging and really the first time anything has gone "right" since this little nightmare began.

On the worrisome side, Derrell had another seizure today.  It was mild compared to the first one and he was at work where there were nurses and therapists that could help him.  I left work, picked him up and brought him home where he has been asleep on the couch all afternoon while I worked my job from home (I love my company, Kinnser Software. They've taken such incredible care of me and other employees who faced tough times). He has a neurologist appointment Monday and we hope to get to the bottom of his seizures quickly.

Finally, today is our 3rd anniversary and we hope to go out tonight for drinks on the Stephen F. Austin Bar Balcony, by the "So you gonna eat or what?!" sandwich trailer where proprietor Eric has, at Derrell's request, created a custom sandwich just for me.  Once that's consumed, we'll go for an hour cruise on Lady Bird Lake.  I love this guy like I've loved no other.

Life.  It has it's ups and downs.....and often all in the same day.

Tuesday, May 27, 2014

My First Post Lupron Visit Tomorrow

So I visit my oncologist tomorrow for the one month follow up after the first Lupron injection.  He'll be doing a general physical exam, asking about side effects (I can name a few) and checking PSA levels (which means no sex tonight.....thank gawd there is still the option of having sex). I'll be sharing with him the chronic aches and pain in my bones and joints, the sweating at night (no hot flashes so far), the extreme sensitivity to hot and cold., the fatigue I have on some days....shoot the just feeling crappy some days. The nausea and dry heaves I've had a couple of times since the injection.

I'll also be asking about a therapy called  Provenge that ramps up your immune system to fight the prostate cancer.  It also has a host of side effects, costs $96,000 and people already taking narcotics for cancer related pain are ineligible.  Options......yup, options.

So the train ride continues!  Many thanks to everyone who comments and send messages of support.  To know that people I've never met before are supporting me and getting something from this makes me stronger.  Thank you and love to all.

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.