Fuck Pain

 

It's long since time for an update so I'll try and give you one here as to the status of my health and prognosis.

This is been a rough ride..... the eight years that I've been dealing with this. It's an ugly cancer that can be quite aggressive yet, even so, if you play your cards right you can live longer than experts suggest. In addition to the pain as described in previous posts, Saturday due to a slip trying to step over the suggested seat in the shower, I twisted my back and it sure feels a lot like when I blew a disc about 20 +/- years ago. It is absolute agony. If I just sit still I don't gasp for breath too often, on a 1-10 "pain scale", I hover around a 4 or 5. But when it comes time to move (or sneeze, couch, stand up/sit down, etc) and do things it's like somebody took an ice pick and stuck it in the base of my spine. They talk about a pain chart of 1 to 10; a blown desk in your back requires an Oppenheimer formula to describe. So there's that.

My torso aches just generally speaking. That would make sense with tumors spread throughout all four quadrants. This sciatic type pain that runs from groin down to my left foot remains, but the good news is that the swelling has decreased substantially. Now if we can just get the pain to follow suit I'll have things at a more manageable level.

I think it's safe to say that we're late in the fourth quarter. How about that? A football euphemism for me!? But seriously I know my body and my abilities decrease every day with a corresponding increase in pain and fatigue.

Fuck pain.

Since Right Before Christmas It Seems

First and foremost I want everybody to know that I'm doing really well emotionally. I laugh at my situation, I laugh at cancer every chance I get. I've laughed about all the stories about myself as well as my sibling and family memories. But the bottom line has I'm not frightened and I'm not irrational as a result of the possibility of dying.  Remember, no one gets out alive. But I'm at a good place...very much compos mintos

So, let's get the fact stuff out of the way. I've had no further imaging or blood work done since PSMA Scan at UCSF 2 or 3 months back. But I don't need pictures to tell me what I feel.

My torso aches BUT, fortunately there's not any kind of stabbing or other type of pain with the metastasis to the lungs, liver and seems like there was some other organ involved I don't seem to recall call.  At one point, you give up counting and ya just gotta go.......hey dude,  ya got cancer and eventually it progresses. As far as pain goes, it's a bit different than it was six months ago. I've had the peripheral neuropathy for some years and just general achiness like down in my bone achiness.

What's different now is it is a pain that runs from my pelvis down my left leg and the beginning of the same thing on my right leg. The best guess is this is caused by swollen lymph nodes (The medical term is bulky lymph nodes). But instead of didn't just being swollen and bulky, now they're causing pain.   A STAT ultrasound of my left leg showed Deep Vein Thrombosis                                                                   

(DVT) running the length of the leg.  A bit alarming as DVTs can break loose and hit the lungs and they then become known as Pulmonary Embolism.....and those just suck because they can hit your lung and just flat out kill ya!  I mean the very idea!

So I've spent much time horizontal, leg propped up or using assistive devices and a blood thinner has been added to my medicine regimine,  so we'll be talking about the offending lymph node in the next week or two.  Might just radiate that lil' bastard.  I need that leg back.

Which leads us to the subject of pain control. We did change meds to further deal with pain.  I won't go into specifics;  but my physicians and and others involved seem to finally understand that this is wicked pain, I have quite a tolerance and it will only get worse. I continue to use medical cannabis, oil, flower, sublinguals, vapes and these days more for palliative relief than any recreational need. I remain of the belief that judicious use of the right combination of cannabis has increased my months long predicted life span back in 2014 to 8 years come March 2022. 

But things are getting real and may advance faster than I expect.....who knows? 

With the arrogance of youth, when my father spent his last year fighting lung cancer (d - 1989), I thought, I mean I really believed that I understood what he was going through.  I was just sure I knew.  Sure that I understood just how exhausted/fatigued he was; sure that I understood how frustrating memory lapses were; absolutely convinced that I knew for certain how bad that pain had to be and how it must be being well cared for because they were giving him MORPHINE for god's sake!  (There are only about half a dozen stronger, legal pain meds).

Yes, I thought I knew all these things.  I knew I did!

But I really didn't.  You cant understand this until you go through it.  Not the fatigue, not the pain, the pain you can't really explain to others and that they can't always see.  The kind of pain one learns over 8 years that is less aggravated if one doesn't thrash, scream and and raise the BP;  all it does is make it worse; not the loss of your body, not the loss of control of so much of your life. I just didn't get it.  I'm sorry Dad. The family was just trying to do the next right thing.  But you died an undignified death in a place you didn't want to....a hospital.

You taught me many things, but one of the most important was to try to leave life from your home surrounded by loved ones.

We didn't get that done for you. I'm sorry.

So, back to my impending demise (hell, I don't think we're talking more than a year and likely less). My pain increases quickly; my mobility and ability to do what I'm used to doing decrease rapidly. As to my biological age due to treatments over the last 8 years they tell me I'm 10 years older (+/-) physically, my memory is challenged due to chemo brain (been a constant since 6 doses of Lupron in 2014) as well as the need to take strong medications.  I'm having to make more detailed notes.  My family and I need less visits and involvement....at least for right now. There will come a day I'm sure more is needed 

I can happily report that there is little if any ED.  I can urinate like a champ with Flomax and pain meds. Bowel issues and constipation are very mild and I'm pretty darned regular.   Not that there is a long line of suitors but that's OK!  

I've suffered no shortage of phenomenal loves in my life with some of the most gorgeous men including those that worked in certain industries  I have no complaints.  I've had 3 breathtaking love affairs, each in their own way. The most recent particularly. I've had good love.

I've made 8 years of relatively decent QOL, although there have been some rough patches.  But I made it........I'ma  tough mother fucker! But I try to live today and not live yesterday nor tomorrow. I'd be lying if said there was no added anxiety......no apprehension

I'm not down and out.  Through the generosity of family, I have a beautiful home, I am awash in love and care.  I'm re-establishing important.......no, unbelievably important relationships.  Both family and long time friends. Also, I can say that Hospice is getting better and more in tune with my needs. For this we are grateful. Chronic pain is a bitch. But no one said life wouldn't be a bitch.

I have things I want to write, photos to put into a montage.

But I ain't goin' anywhere just yet, mark my word.  I got laundry to do and I am not departing this sphere without vacuuming under the bed.

Much love..........

Monday, 1/10/22

 Today was a bit difficult.  I started having sciatic type pain down the left leg from the pelvis yesterday and it got worse.  I only woke up a couple of time during the night, but at 9am, I took more meds and went back to sleep. I think a lymph node is impinging on a nerve and so yeah, = sciatic type pain.

Hospice nurse came today and we'll reevaluate pain control. 

My family leaves me speechless at times.  I'm blessed.

I'm good emotionally, I just have an intense sense of urgency to get vital things done.  What have I been NOT doing over the last 8 years?!  Seriously, most is addressed but there are still a few.

The outpouring of love is a wonderful salve and source of comfort,  I don't care how you oray or send good thoughts, they're welcome in any form

Sleep well sweet friends

Perspective

This is what my oncologist told me as far as longevity in July 2014.

More to come in a later post about my Come to Jesus meeting with my oncologist yesterday.  But he did provide 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

 

This is why I’ve agreed to chemotherapy starting July 28, 2014.

 I'd say I beat the odds rather well.

Status Update

 I am now formally on hospice care.  We're working toward good pain control and I don't really have to leave the house, so this is helpful.

In addition to the severe, chemo induced peripheral pain, I now have pain in my torso, which would make sense with mets to liver, lungs, and lymph nodes, both upper and pelvic.  That's to say that the pain has moved into a new level.

My energy is still slim to none and standing for long periods is out of the question.  I've also resigned myself to probably needing a wheel chair for outings as I can be very unsteady on my feet.  There will be no ladder climbing in my future.

Emotionally I'm well all things considered.  I'm enjoying life despite all that has come and will come my way and have been warmed by an outpouring of love and assistance from my nearby relatives.  Talk about stepping up to the plate.

I've put in process California's Death with Dignity Act and made the appropriate legal requests.  I won't fight this to the bitter end with every possible treatment the medical establishment has to offer.  I've seen it up close too many times and it's brutal and flat out ugly.  I like options and Cali offers this as one.  By the end of the month, I should have that option, and I'm relieved by that.

My energy is only available if I've taken a prescribed stimulant and even then, that's a temporary, artificial run for a few hours.  Talking on the phone can be wearisome as can writing a message like this.  So I've been out of touch and largely off Facebook.

Going forward I'll try to keep the blog updated for those who wish to keep track of my status.  One reason I started the blog almost 8 years ago was so friends/family would have a central place to go for Status Updates.  The blog turned into much more over the years with 43,000+ views, and numerous emails from men around the world seeking advice.

But at this point, I'm turning it back into a source for my current status so I encourage those of you who wonder how I'm doing and have a computer to please bookmark this page and I in turn will try to keep it updated.  Sometimes I might be up for a phone call and would enjoy it.  What I can't do is repeat the details of my current state several times a day.

Please help me accomplish this.  Much love. 

Hey Dr. Medical oncologist (MO): Now that I've got 1478 characters I can express myself a bit better. 

I've certainly noticed my decline in function over the last six months to a year. And as we both know now it was the cancer starting to run its course. I've known since the 2014 that for someone my age and who couldn't have an RP, it was not a matter of if but when. I assure you I've thought long and hard about hormone deprivation.

Spent hours at UCSF Library. Read countless blogs, spoken to dozens (hundreds?) of men in my shoes. You may recall that I tried it for the better part of year one time. I was borderline suicidal as a result not to mention the depression, the hot flashes, the weakness, the malaise, the loss of muscle mass and the increase in body fat and last really, truly last what is the loss of sexual function. Not number one concern.

And it might buy a year....a miserable year. No Doc, I want to focus on and maintain as long I can, fairly good quality of life. Castration does not provide that. 

PSMA, once approved is promising but the medical community still insists on castration to even be CONSIDERED, which I will never understand. I hope that HDT in its various forms of poisonous treatment is banished. But I'm not a "standard protocol" guy, which you know. It's worked rather well going on 8 years. 

Dr. MO, thank you for your knowledge, your compassion, your friendship, your often sage advice. I have truly appreciated you as a physician and simply a nice guy. 

Best, Scott

Hospice - It's time

When I started this journey going on almost eight years ago, I assumed that at some point I would probably have to write a post regarding end-of-life care and possibly hospice. I actually expected to have to write it sometime back but I beat the odds for a long time. Regardless of whether that's due to the initial western treatments I had, the heavy use a full extract cannabis oil or just plain old good luck I just kept me kicking around. Today I met with a very nice registered nurse from Hospice of the East Bay who we will call Cindy. She was here to do an intake. I had noticed over the last year, in the last six months in particular, that my energy, my memory, my pain levels, my appetite had all degraded and continued to do so. The PSA score of 330, triple what it was two months before (i.e. it was then finally the state of the art PSMA Pet scan on my birthday that gave firm evidence that the PCa had metastasized extensively to both lungs, liver, what's left of the prostate and multiple lymph nodes both in my neck and groin. Having lived through the AIDS crisis of the 80s and 90s, having buried both parents to cancer in one sense or another, I've had a lot of interaction with hospice and these are very special people that do this kind of work. So now the doctors will be coming to me. Well at least they RNs will. My disease associated medications are now 100% covered and will be delivered to me. I'm getting a couple of assistive devices is such is a walker and a shower stool not because I can't stand and shower or because I can't walk but sometimes it's difficult. I want each of you to know that I am at peace with this decision. As a matter fact, I have a great sense of relief. I've been fighting this pretty much on my own for five years and dealing with it for going on eight and I just I have to recognize reality. Hospice can do the most good for you if they get involved early. So that is by way of saying that I'm not going anywhere this week. I kidded the nurse today that it seems that I'm a tough motherfucker to kill. lol....... Fortunately she had a good sense of humor ;) Please know that emotionally I am really good. I'm not throwing in the towel and I will continue to seek out possible treatments that makes sense. But I won't take hormone deprivation unless it becomes a palliatively necessity. I've had a good run considering what my diagnosis was. Eight years instead of five.. But truth of matter, I'm exhausted from treatments, the limitations, the lifestyle, the never ending pain. Please support my decision. It's not one I've made lightly; it's one I thought about for many, many years. All I ask of my friends and family is that you just keep loving and joking with me! Laughter is good and I'm good with it. I dearly love my friends and family and it goes without saying, I've been extraordinarily blessed in my life. To the men around the world that I've been able answer questions and give you some info or reassurance......well I'm proud I was able help in some small way. 

 But I'm at peace folks.

PSMA Scan done......Not great numbers.....In person visit with the PCP/Palliative....I Can't Speak Highly Enough of the Man

The specifics came back from the radiology report, etc. etc. Please keep in mind that when I was diagnosed in 2014 my PSA was 5.2 ng/ml. Throughout the last seven years it's never been more than about 40 give or take. The test from six weeks ago says it's 330 now. And that would support a lot of what's been going on with my body, my energy or, more accurately, my lack of energy. I've struggled with fatigue for so long now I just don't quite know what to do with it. My palliative guy gives me a stimulant which often helps but it has a short half life so I have to take it just right so that I'm on the downward end of the dose as I go to sleep. But here here's the real bottom line situation. The palliative guy feels like with four if not five areas of metastasis including both lungs, liver, lymph nodes, I am in an "unfortunate" situation. I may have to make some decisions real quick if I do anything at all and there aren't many options so I will be talking with the UCSF research guy next Tuesday and try to see if I can figure out a there's a reasonable path down the yellow brick road. When I asked my Palliative guy how much time (Dr’s hate that question BTW) based on what he knows of my diagnosis and my history and most importantly what he knows about me do I likely have, his commentary was you can always buy time but realistically months….maybe a year. A friend just finished two years of hormone deprivation therapy. He was diagnosed in 2019 so I guess I finally reached that point my life where I am the old wiseguy...lol. Who knew?! But back to what he said, and that is, "it's poisonous". There's a formula palliatve docs use to estimate longevity and it’s an educated guess. It's called the Palliative Performance Scale I know my body pretty well and for going on six months or so now I can't get enough sleep. I'm just exhausted all the time. The palliative's scale suggests a year at best. The PSMA treatment catches my eye because it doesn't require castrating a man, either literally or chemically. I want to know more about the side effects from the little nuclear bombs they send the cells. Yes folks, you heard it here! You heard it here first. This treatment makes sense and comes with few side effects; it's the first thing that caught my eye in seven years where I've thought now that probably makes sense. So we will see what the treatment the UCSF research doc has to offer. Immunotherapy is not off the table I don't think. But I can tell my body is degrading...which was bound to happen sooner or later with my diagnosis. So please feel free to send me your thoughts and prayers. For the readers that are also patients or loved ones of patients, please feel to reach out to me at anytime. Ever. Always. I know how frightening this is. But I also know that come March I'll have officially been dealing with it for eight years. They told me in 2014 if I did everything they said, I might make five. I'm a lucky man. I'm a very lucky man and part of that is having friends and family that have been so supportive for so long. To borrow a wonderful line,"If I'd known I was gonna live this long I would've taken better care of myself!" You see a few years ago I didn't think I was going to live very long. But I did things my own hardheaded way, which I'm prone to do, and lo and behold, I'm still here. And most everything functions like it should. That big load of gratitude is owed to my friends and family because without them, I wouldn't have had the strength to stick it out this long. Much love and onward!