Wednesday, January 25, 2017

Life Almost 3 Years After Diagnosis...The Ups and the Downs and What’s Current - Part 1




Soon it will be 3 years since my life changed dramatically.  In January 2014, I was happily ensconced in my tech support position at one of the best start up software companies in Austin, Kinnser Software, where I was a delighted to be employee #43 (they now have over 300 I think).  I was also a year into a wonderful, loving relationship that had brought me some of the greatest joy of my life.  I was eating good, wholesome, home cooked meals most days and I was running about 8-10 miles a week and hitting the gym 3-5 times a week.  I FELT GREAT!!! No inkling of any kind of illness.  At all.


Then I went for my yearly physical.  My wonderful PCP noted my PSA had jumped at what he described as a “troubling” rate.  After a urology exam, MRI and prostate biopsy they showed an advanced tumor that was a Gleason 8. Gleason scores range from 2 to 10 and indicate how likely it is that a tumor will spread. A low Gleason score means the cancer tissue is similar to normal prostate tissue and the tumor is less likely to spread; a high Gleason score means the cancer tissue is very different from normal and the tumor is more likely to spread.  Mine had indeed spread to both lungs and was outside the gland, known as “extracapsular”. It was also described as an aggressive, virulent strain of adenocarcinoma. In other words, a really bad, very serious cancer.


So I jumped on the hormone deprivation therapy (chemical castration) and chemotherapy (docetaxel) train.  Long story short, they did what they were supposed to do:  they reduced the size of the tumor, rid my lungs (as best medical imaging could tell) of the cancerous nodules and I was in a state of being “stabilized”, but not in remission.


I survived 6 rounds of chemo and I did two, four month rounds of hormone deprivation.  Most women had more testosterone than I did during those 8 months.  I decided I could not handle the side effects of the chemical castration which included extreme fatigue, weight gain, muscle loss, absolutely zero % libido and just a general feeling of malaise.  So I opted out of that “therapy”.


The chemo was brutal.  I lost my hair, I had little to no appetite and my energy was non-existent.  I also began to experience what’s known as “chemo brain” which, generally speaking, is a loss of cognitive function and horrible lapses in memory. I also began to experience neuropathy (pain from damage to nerve endings) in my arms/legs, hands/feet, wrists/ankles. This side effect continues to this day and is THE most debilitating thing to come out of all this.  I take two different narcotic painkillers just to function and get routine stuff done.  Docetaxel has been used for a couple of decades for women with metastatic breast cancer and so many report suffering these and other side effects for years…...long after treatment ends. For many who are lucky enough to see their cancer go into remission, they still struggle with the damage done to their bodies by the “cure.”


That is the story up to date in a summarized form.  More detail can be found in some of the earlier 85 posts on this blog (yes, I’ve been at this a while now).


In summary:


Hormone Deprivation Therapy


No question an effective form of treatment.  For many PC patients, it keeps the cancer at bay for a long time, in some cases years.  The side effects from having no testosterone are severe but probably more tolerable for an older (60s-90s) man who has already started to see a natural decline in the hormone as a result of age.  For a “younger” man (30s-50s) though, it can be devastating.  I decided I’d rather live a shorter period of time feeling more like me than a longer period of time feeling like a eunuch.  So eight months was enough of HDT for this “young” man.


Chemotherapy - Docetaxel


No question this “therapy” did it’s job but it’s a brutal process.  The nausea, the hair loss, the fatigue, the thrush in your mouth, the feeling like you always have the flu, the cognitive decline, and, worst of all, the extreme neuropathy make me wonder if the additional time it bought was worth it.  Does it make sense to make yourself feel really sick and in extreme pain all the time to buy a few extra months (average life expectancy increase after undergoing docetaxel treatment is 4 months.  Yes, approximately 120 days)?  Given the quality of my life now, I can honestly say that if I had it to do over again, I wouldn’t do it.  Maybe if I had kids and they hadn’t grown up, gotten married had my grandkids, I might feel differently.  But now it’s just me and I hurt all the time;  that’s not a good quality of life.


Cannabis Oil


In late August, after working with a wonderful, kind, talented friend who did a video for me and my dear brother to raise the funds via a YouCaring (think GoFundMe) campaign, I obtained a roughly 4 months supply of high grade cannabis oil.  I took a gram a day split between an oral dose and a suppository.  On the positive side, roughly two weeks after  starting to take it, the WORST part of the neuropathy, that which was in my palms and the soles of my feet, was greatly reduced. I wasn’t and am not pain free by any means, but I was better to the point where I could start going to the gym and using the elliptical machine and, once in awhile, I could “run” for a few minutes.  I could also walk about a mile in the neighborhood at night.  It was a HUGE improvement.  On the negative side, my PSA, which had been rising at a steady rate since I ended the chemo shot up in at an enormous rate during the four months.  The “trajectory”, as it’s called,  was indicative of the tumor being quite active and growing like a well fed, hungry baby.  So cannabis oil, while it had it’s benefit, wasn’t the panacea I’d hoped for.


That’s it for today.  I saw the oncologist yesterday and there is more to share but I’m exhausted and this is enough for anyone who is interested to digest.  More to come tomorrow regarding my current status, another treatment option that has been offered, my lifestyle on disability and other EXCITING reading!  ;)  Thank you all for your support and, if you have a few dollars (I mean $5 would be huge to me!) to help me improve my transportation situation and pay some medical bills, please click where it says “I need your help” and, as Willie Nelson likes to say, throw me a bone.  Best wishes all and talk to you tomorrow.

Scott

No comments:

Post a Comment