Thursday, April 28, 2016

CT Scans Tomorrow

More on the rest of getting to where I am soon, but first a note that I've figured out the CT scans and am going tomorrow for them.  I don't know for sure what's going on in my chest/abdomen/pelvis, but I do know my body and how I've felt recently and the pain I've experienced (and that is likely a great deal from chemo), and that hasn't been good.

So throw a coin in the fountain for me (Trevi) and I'll check back in in a couple of days.

Wednesday, April 20, 2016

I Love SNL, But They Crossed a Line With the "Heroin Mom" Skit

Since I was diagnosed with severe, aggressive prostate cancer two years ago and then went on chemotherapy to try to lengthen my life, I've been plagued by chronic, severe pain in my extremities.  Nueropathy such as this is a common side effect of treatment with docetaxel, a chemo drug that has been used for decades to treat breast cancer. While killing cancer cells, it also damages nerve cells. I use 5 different drugs to deal with the pain, two of them narcotics.  The narcotics I currently take are Opana time release (oxymorphone...a molecule or two away from Dilaudid) and generic Percocet (oxycodone and acetaminophen) for what's known as breakthrough pain.  They allow me to actually get out and do things; shop, go to the gym, have lunch with a friend, clean house,  and do what I feel up to and, yes, do something as simple as brush my teeth and shower.  I've never used heroin.

These are serious drugs and not too distant from heroin. I understand and respect that and I haven't always had the best relationship with narcotics.  But I need them to function as a result of my disease and the ensuing treatment. I've always loved Saturday Night Live.  They've pushed the edge from the beginning.  But they crossed a line with their "Mom uses heroin" skit. There is nothing funny about it.  Too many people need pain killers and can't get them so they turn to the street.  Too many people don't need pain killers and go to pill mill clinics to get them. Too many "pain specialists" are lured by the money and the ethical, compassionate pain specialists who work so hard to help their patients are pushed into a very narrow corner. And, most seriously, too many people die from heroin use every day in this country.  But addiction and subsequent death isn't funny and it hits too close to home to this terminal cancer patient, SNL.

http://www.cnn.com/2016/04/18/health/saturday-night-live-heroin-skit-outrage/index.html

Tuesday, April 19, 2016

A Little Humor - Potty Chairs and Significant Others

The garage apartment I'm staying in uses a septic tank and with the tremendous rain we've had in Austin the last few days, it's managed to overflow the tank which makes the toilet useless.  My landlord, a very kind, sweet man, pulled a hospital type "potty chair" out of his attic and set it outside my back door for use until the plumbers come to fix the septic system.  It made me think of this:

 2 years ago when I was first diagnosed, they discovered I had cancerous cells in my lungs too.  They felt it important to determine if they were the same cancer as in my prostate or a different type.  I went through 3, YES 3!, lung biopsies.  I was in Seton hospital for just over 2 weeks.  During the last 2 biopsies, they collapsed my right lung (once by accident and once on purpose) to get the cancerous tissue they needed for testing.  When your lung is collapsed, they insert a tube about a half inch thick and about 10 inches long into your back running down the backside of the collapsed lung.  It sucks out any fluid that builds up so the lung can slowly heal and reinflate.

As you might imagine, the pain of having this tube rubbing against your lung EVERY time you breath was just horrendous!  SO they had me on IV pain meds that I got every 3 hours or so.  VERY constipating.  My soon to be husband was there with me almost every hour he wasn't working (he was my rock through that horrible experience) and he happened to work at a physical rehab facility so he could do just about anything short of what nurses do.  He'd helped me sponge bath myself (I was attached to a machine and had the IV so I could only get about 3 steps from the bed), so he'd seen me quite naked in the hospital and, of course, at home.

I told him I thought I might actually be able to have a bowel movement (I hadn't in several days) so he got me the potty chair and sat it next to the bed.  I'd never been in this situation before and was a little unsure about potty chair protocol so I asked the brilliantly stupid question, "What do I do?" He looked at me like I was an imbecile and said, "Scott, you sit your butt on it and shit.  Understand?"  I shook my head yes and he kept piddling around the room doing stuff.  I finally said, "Are you going to step out of the room?"  He replied, "Oh just go ahead.  I deal with people crapping all the time at rehab."  I said, "Well you may be ok with being in the room while I poo, but I'm NOT ok with it, so please step out till I tell you I'm done."  He rolled his eyes and left the room and I took care of my business. 

some things are best done in private.

Monday, April 18, 2016

Median Life Expectancy

My Oncologist provided some eye opening stats on Median Life Expectancy for men with Stage IV, metastasized (to a major organ i.e. lungs), aggressive, Gleason 8 prostate cancer.  They are as follows:

No Treatment – 12-18 months

Hormone Therapy only – 32 months


HT and chemo – 49 months

.

2015 Continued

2015 was a difficult year.  I'd become depressed and angry.  My wonderful relationship was crashing, I was plowing through savings and 401k and, yes, living beyond my means.  Still living in the somewhat expensive duplex with the view of downtown Austin by myself and footing the whole bill.  My employer, Kinnser Software, finally reached the limit of FMLA and terminated me.  Friends and family got on with their lives and I was on my own.  Some of this was mine to own; it always was and continued to be very hard for me to ask for help.  I've always been able to do everything I needed to by myself.  So I rarely asked for help.

My PSA stayed immeasurable for the first few months, then rose to a .27, then to a .97 and I began 2016 with a rise to 1.27.  While PSA is only one indicator, in someone with my history, I knew what it meant.  Now I have to figure out the over $600 for the CAT scans of my chest, abdomen and pelvis to see what's going on.  Difficult on a $1505/mo income.

I moved from the duplex the beginning of December by myself except for the two guys I hired off Craigslist to help with the king sized bed, couch and dresser. I cleaned the whole place by myself and got the majority of the deposit back.  Then I stayed in a generous friend's spare bedroom and was wiped out for a week from moving everything to storage.  She and I had a falling out and I began to move to and from a series of cheap motels and friends couches.  Finally I was rescued by a dear set of friends.  I had a "home" to stay in.

These two ladies are parents to my favorite "adopted" nephew, their son who is almost 6 years
 old.  They have an RV that is 16 miles out in the country outside Fredericksburg, Texas.  I'd lived in Fredericksburg with my parents in the early 1980s.  It's a very conservative, tourist attraction town.  The RV was 16  miles outside the town on a sloping set of about 5 acres.  It had electricity and propane but no running water.  I learned quickly that there was a gym just inside town with a shower, so I spent $45 so I could have a place to shower and have the added benefit of a place to exercise.  I learned where to refill water jugs for 25 cents a gallon ("low price" Walmart was .37 cents) and, not having TV and very unreliable internet, NPR on the radio became my best friend.  But I was incredibly grateful for their thoughtful generosity and not having to live in my car.

It was a long, lonely 2 months.  My escape from purgatory to follow soon.

Saturday, April 16, 2016

So What Happened in 2015 After the Treatments ?

I ended 2014 relatively optimistic.  I'd taken all the recommended treatments (Lupron and Docetaxel) and the cancer was, at the very least, stabilized.  There was no evidence of lung mets anymore, my PSA was 0, the tumor seemed to have shrunk some and there was no longer evidence of extra-capsular extension or seminal vesicle involvement.  That was the good news.

The bad news was  I had little to no energy, had gained almost 20 pounds (despite having no appetite and having to be reminded to eat by my husband), my muscle mass was vanishing.  I rarely got out of the house, was close to losing a job I loved dearly and the strain of taking care of me as well as dealing with his own new illness (seizures) was becoming too much to bear for both of us.  The chemo had left me with severe neuropathy as well as chronic fatigue.  I decided since I was done with chemo and, thankfully, not a candidate for another round but was due for another Lupron treatment, I would take a vacation and see if I couldn't get back to the old me.  After a second consult at MD Anderson in Houston, I advised my oncologist here in Austin that I would no longer take Lupron and unless he had any other ideas, I'd focus on eating right, exercise, meditation and explore cannabis oil.  He advised against all this and really wanted me back on Lupron, but I told him I'd rather die feeling like Scott than live longer feeling like Scott's withering away, female counterpart.  I stand by that decision.....and if I had it to do over again, I wouldn't do the chemo either.

There are numerous blogs of women who took docetaxel who YEARS later report fatigue and extreme pain from the damaged nerves thanks to the chemo drug.  This is what I struggle with now. Yes, I AM alive, but I have to take no less than 5 medications (narcotic and non-narcotic) to keep the pain manageable enough that I can be semi productive.  I now live on $1505/month thanks to having worked hard since age 15 and paid into Social Security each year of my life.  But more on that and where things are headed later.

I'm alive and getting to where I enjoy some days.  That's the important thing.

Great Resource - The Prostate Cancer Foundation

http://www.pcf.org/site/c.leJRIROrEpH/b.5699537/k.BEF4/Home.htm

The Prostate Cancer Foundation site is a wonderful resource with info on treatment options both for those newly diagnosed as well as those like myself with advanced disease.  Also links with into for caregivers and loved ones, research and many more.  Give them a visit.

Friday, April 15, 2016

Bringing You Up To Date and a Mini Refresher for Those Who Haven't Read My Story

In January of 2014, I was a strong, healthy, happy 52 year old guy with no major health issues.  I ate good food, I worked out 4 to 5 times a week, I had gotten into running, was 3 years into a great job with this little tech startup called Kinnser Software and was also 3 years into the best, most loving relationship of my life.  Life WAS great!

Then I went in for my yearly physical.  I wasn't one of those guys who avoided the doctor at all costs; rather, I was one who went happily as I had good health and a great primary care physician who I genuinely liked as a doctor and a friend.  He noted that my PSA had risen from 1.45 in 2011 to 4.91 in late 2013. At the time of the physical in 2014, it was 5.2.  During a DRE my friend and physician noted a lump and abnormalities in the prostate.  So off he sent me to a urologist who talked me into a biopsy of the gland.

I was diagnosed with a Gleason 8, stage IV cancer with extracapsular extension, suspected seminal vesicle involvement, very aggressive type of PC and, to top it all off, cancerous nodules in my lungs.  Three lung biopsies (never again!) confirmed the nodules were indeed metastasized cancer cells from the prostate.  The most simple way to put it was, I was in deep shit with few options.

At first, the only option I was given was hormone treatment with Lupron.  I agreed and within a month, my measurable testosterone was 0.  As in none.  As in most women now had more testosterone than I did.  I felt horrible; weak, losing muscle, gaining body fat,  body aches and pains, libido gone and just not like a guy or like Scott anymore.

By May 2014, my PSA was also unmeasurable, but I was advised there were no guarantees it would stay that way and would likely become Lupron resistant at some point.  I was also told the FDA had approved the first chemo treatment for "castrate resistant" (lovely marketing term, eh?) PC and it was using a drug called docetaxel, a highly toxic but effective drug that has been used on women with breast cancer for decades.  FDA studies showed that this chemo treatment (8 sessions, 3 weeks apart) had a positive effect on PC cells and extended average life expectancy by 3-5 months.  Not having any better options, I agreed to it.

By the end of chemo treatment (don't forget, I was also doing the Lupron/no male hormone thing at the same time), I was bald, had little to no energy, had clouded mental function ("chemo brain"), couldn't work, was on disability, and had begun to have severe pain from chemo induced neuropathy in my feet/hands, wrists/ankles, and arms/legs.

So I ended 2014 with good numbers, medically speaking. As I wrote in December of '14:

  • * My lungs appear to be cancer nodule free
  • * My prostate and the associated tumor appear to have shrunk substantially
  • * The tumor is no longer "extracapsular"
  • * The tumor no longer appears to have seminal vesicle involvement
But I had traded one problem for others.  Horrible neuropathy as mentioned above, extreme fatigue and depression.

So that's where I left off blogging.  In my next post I'll cover the events of the last 16 months and where I'm at now.

Monday, April 11, 2016

7 Facts About Prostate Cancer All Young Men Should Know - See more at: http://www.prostate.net/2016/prostate-cancer/7-facts-about-prostate-cancer-all-young-men-should-know/#sthash.gfhHfUeV.dpuf

I was 52 when diagnosed with Gleason 8, extra capsular, Stage IV, metastatic (to the lungs) prostate cancer.

Many men 55 and younger are under the mistaken belief that their risk of developing prostate cancer is practically nonexistent. However, although the vast majority of prostate cancer cases develop in men age 65 and older, more than 10 percent are diagnosed in men age 55 and younger.
All men, regardless of age, should be aware of what experts have learned about the risks of prostate cancer among younger men. This is especially true if there is a history of prostate cancer in your family.

Prostate cancer among younger men is rising

A University of Michigan Comprehensive Cancer Center study recently reported that the number of younger men being diagnosed with prostate cancer has increased sixfold over the past two decades. This finding was coupled with the discovery that men who develop this disease early have more genetic variants (genes such as BRCA1 or BRCA2, associated with breast cancer) than their older peers. Therefore, men who have a family history of prostate cancer are encouraged to seek genetic counseling or talk to their doctor about regular early monitoring.

High-risk younger men need to be screened early

Men who have a family history of prostate cancer have a two- to threefold increased risk of developing prostate cancer, and that chance rises even higher among young men who have several relatives with the disease. While men with an average risk of prostate cancer are advised by the American Cancer Society to be screened for the disease at age 50, men at high risk, including African Americans, should start at 45.

Prostate cancer can be more aggressive among younger men

It may seem unusual, but the younger you are when you develop prostate cancer, the greater your chances of dying of the disease. One major reason is that prostate cancer typically has no evident symptoms in its early stages. Therefore, when aggressive prostate cancer is discovered in younger men, it often has already progressed to a more advanced state and therefore is more challenging to treat. Another reason is that some types of prostate cancer appearing in younger men grow more rapidly and can be more deadly than those that are diagnosed in older men.

Early prostate cancer often does not have symptoms

A big reason why prostate cancer can sneak up on you is the lack of symptoms, especially during the early stages. As the disease progresses, symptoms can include urinary issues (e.g., difficulty urinating, urinary frequency and/or urgency), erectile dysfunction, and blood in the urine. However, since these can be symptoms of other conditions that commonly occur in men, such as an enlarged prostate, they can be overlooked. So when in doubt, check it out!

It’s never too early to help prevent prostate cancer

Prostate cancer doesn’t appear overnight; even aggressive forms of the disease develop over time. Therefore, it’s never too early to adopt a healthy lifestyle that can help reduce the risk of a diagnosis in the future. Based on scores of studies around lifestyle that can affect a man’s risk of and survival from prostate cancer, there is some evidence that the following factors have a role: diet high in red meat and/or high-fat dairy, high calcium intake, smoking, pesticide exposure, excess alcohol intake, being sedentary, and being overweight.

There are pros and cons of prostate cancer screening

First of all, the current prostate cancer screening methods are simple; a blood test for prostate-specific antigen (PSA) and a digital rectal exam to detect any unusual lumps or other abnormalities in the prostate. However, there’s considerable controversy surrounding these guidelines for prostate cancer screening, including the accuracy and reliability of PSA and how often screening is needed. New techniques to measure PSA are under investigation, but for the majority of men, the traditional methods will have to do for now. All men should have a frank discussion with their healthcare provider about the pros and cons of screening as it pertains to their unique situation.

Watchful waiting can be a wise choice for young men

Early onset prostate cancer can be aggressive, but in most cases it is not. That’s where watchful waiting comes in. Because treatment for prostate cancer, including radiation, hormone therapy, and chemotherapy, is associated with serious, life-altering side effects (e.g., erectile dysfunction, urinary incontinence, infertility), younger men who have been diagnosed often want to avoid treatment until it is necessary. Watchful waiting, in which men choose to monitor their disease with regular PSA and digital rectal exams (and sometimes a biopsy) while also following a healthy lifestyle, can keep men’s quality of life at its best for as long as possible. If necessary, multiparametric magnetic resonance imaging allows doctors to keep an eye on prostatic lesions when conducting a biopsy and to track any changes. Whether to choose watchful waiting is a decision men need to make with their healthcare providers and loved ones.
Prostate cancer is not just an “old man’s disease.” If you have a prostate, you are at risk for prostate cancer, so stay in tune with your body tuned to your body and see your doctor if you have any concerns or questions.
- See more at: http://www.prostate.net/2016/prostate-cancer/7-facts-about-prostate-cancer-all-young-men-should-know/#sthash.gfhHfUeV.dpuf

Long Time No Update - But News To Be Had

It's hard to believe that it's been 15 months since I last posted.  So much has happened in my life that the blog took second (tenth?) place.  But I AM STILL ALIVE!

I am a 15 months out from Lupron and about 17 months out from chemo.  The good news WAS that my PSA for many months dropped to unmeasurable and my testosterone rose to stratospheric levels so, in some ways I began to feel like me again.  Then over the last year my PSA began to creep back up.

On top of that, the chemo (docetaxel) caused horrific neuropathy in my hands/feet, arms and legs.  The pain is debilitating and requires 4 different meds to keep at bay.  In reading blogs from women who have had this drug, this sometimes persists for years.

So I have traded extra length of life for lack of quality.  If I had it to do over again, I'd take neither drug and just ride out my life.  The only option I seem to have is cannabis oil which, living in the very "progressive state of  Texas" makes that difficult to pursue.

I plan to start writing again as I continue this journey to bring you up to date on the events of the last year as well as my plans for the future.  I appreciate any and all comments and forms of support.