Friday, January 27, 2017

Life Almost 3 Years After Diagnosis...The Ups and the Downs and What’s Current - Part 2 - HOPE

Back to where I left off, so life changed quickly and dramatically in 2014.  I could no longer work, I was sick, in pain and extremely fatigued most of the time. This continues in various forms to this day. My energy is good for about 5 to, on a really good day,  8 hours.  I live in a garage apartment that is basic but safe and relatively comfortable...and I have a wonderful, sweet, almost 80 year old couple as landlords who have become like adopted grandparents to me. I’m really fortunate in having housing that I can afford (relatively speaking) with kind, considerate landlords.

My base income is $1500 a month.  This is from SSDI after diagnosis by my physicians as being disabled due to complications/side effects of chemo.  From that I pay rent, auto insurance, Medicare costs, Medicare supplement insurance,  RXs, Drs copays, food, gas and (God forbid) car repairs.  The base income almost covers basic expenses as long as there are no surprises.  If there are, all bets are off. I feel VERY fortunate to get the amount I do as people I know who are on SSDI often get roughly half that.  Social Security explained to me since I had worked and paid in since I was barely 14 years old,  I qualified for the higher end of payout which maxes at $1700/mo. So my hard work all my life paid off and it keeps me living indoors! But it doesn’t do much beyond that.

I’ve managed to get hooked up with doing food demos at HEB and Central Market grocery stores where on an average month I can pick up $200-300 which allows me to save a little, pay some debts to relatives and medical providers as well as to not be quite so stressed that my bank account will dip below $50. Shoot, in months where I have the extra income sometimes I go see a movie!  At Christmas I had major car issues and a major drop off in food demos and BOOM, my tired back was frighteningly against a wall financially. Only thanks to my kind landlord and generous friends and relatives did I manage to make it. I also enjoy the food demos because my stamina can handle 4 to 6 hours once or twice a week and I get to interact with hundreds of people which helps me feel connected to folks.....and this is vital to good mental health for me.

I spend a lot of time reading, writing, resting and I’ve been strangely comforted by having started a The West Wing watching marathon since I never really watched it when it originally aired and right now, one can fantasize about how those offices would be with good people occupying them. Enough politics.

Oncologist visit Tuesday January 24, 2017 - PSA Rise and the Velocity of the Rate at Which It Is Rising.

I saw the Onc this week to follow up as to my status and any new possible treatments.  Of note was concern  over the “velocity”, or rate at which my PSA level had risen in the months since late August. At the beginning of 2016,  after hormone deprivation and chemo, my PSA was considered, at .95 ng/ml, as unmeasurable.  From January of 2016 to August 2016, the level rose from .95 to 1.49 or about half a point in 9 months.  In the next three months, it rose from 1.49 to 1.97, or the same half point rise that had previously taken 9 months.  At that rate, I will be back at the same level I was at when originally diagnosed as Stage IV (4.91) in about 1 and a half years.

The oncologist stated that an increase or “velocity” of this rate was troubling given my history and that while he was unable to say without MRIs and other diagnostics with 100% certainty that the tumor was off to the races again, he felt confident in saying this was likely the case.  He also reminded me that when diagnosed I was advised that there was no “cure” for such an advanced case of PC that had metastasized like mine and that this was still the case.  He stated the best I could hope for was to delay the growth of the original tumor and delay further spread of the metastasized cells. In a nutshell, this is not something I’ll ever be cured of and it will grow and spread.

Another Treatment to Consider - Provenge - $100,000 to Get Another 4 Months

We discussed the immunotherapy treatment called Provenge which takes an individual's own immune cells and reprograms them to attack the cancer cells.  It’s something I’ll look at as chemo was a one shot deal, and I’m not sure I’d do it again even if it were an option and hormone deprivation is something I tried for 8 months but found the side effects too severe.  The upside to Provenge is that it’s got a good track record and the methodology makes sense to this layman.  It also seems to have relatively few side effects and they seem to not be long term, severe ones. The most common side effects include chills, fatigue, fever, back pain, nausea, joint ache, and headache. On the more serious end of the spectrum, are stroke, extreme bone pain and infection.  Also of note is the average life survival rate increase averages 4 months.  Oh, and it costs about $100,000.  Medicare would pay for 80% of that and while theoretically I would be responsible for the other $20,000 (oh sure, no problem!), I was advised that the manufacturer of Provenge usually finds a way to write off the 20%.  After all, $80,000 is not bad for one patient, right?

In summary

My life is quite different now.  The great health I enjoyed right before diagnosis and beginning treatment - gone.  The wonderful,, enjoyable good paying job that I enjoyed so much - gone. The loving relationship I was in is now long distance and more a case of very good, caring friends.  There are no recreational trips as money for them or going out to eat just doesn’t exist  

On the bright side, I’ve been heartened by the support of family and friends.  The niece and nephew who are busy raising my two great, great nieces have been there whenever the old clunker car gives out. A handful of friends checks in on me and stays in contact on a regular basis.  I’ve made a new, delightful friend here in Cedar Park who goes out of her way to socialize and get me out of the house; she’s like having a new sister and it’s brightened many of my days.  I’ve made several new friends from the grocery stores where I do the work that I can and I so enjoy seeing them the few times a month I demo. I’ve learned that I’m a pretty good economizer and sometimes impress myself with my ability to squeeze a dollar for all it’s worth.  I’ve also been grateful for time with children in my life because they have that wonderful innocence and silliness that we all lose to some degree with age.  They make me laugh and smile.  

So it’s not been a bed of roses and it doesn’t appear that anything will make it so.  But, as Shirley MaClaine once sang, I’m Still Here !

That’s it on the updates to today.  As I consider Provenge, I’ll write more and I’m also working on a Top Ten Things for Younger Men with PC to Consider (it may be Top 7 or Top 15, not sure yet;)  as the increase in men under 55 getting aggressive PC has been a rate of a 6 fold jump in 20 years.  Additionally, getting PC, be it a mild case or an aggressive case is quite different for a guy in his 40s than it is for a man in his 70s.

Finally, heartfelt appreciation to those who have helped financially.  Asking people for money is not an easy thing for me as I’ve always been able to cut it on my own.  But times are different now and while I haven’t quite raised enough to repair my sole means of transportation, I’m much closer than I was.  So if you have a spare $5, I’d appreciate your considering throwing it my way or in the direction of someone else who needs a small hand up.  It not only helps financially, it helps emotionally.  You can give via YouCaring right here

Much love to friends, family, the readers of this blog and anyone who has been affected by this dreadful, life altering disease.

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