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!

PSMA PET/CT Results Are In

The state of the art PSMA Scan results are in and they're not particularly surprising. So let's just get right to it shall we?

A brief explanation of the technology is in order I think because it is so new. Prostate cancer cells give off a certain antigen that can be tracked by certain radio tracers. This scan can show lesions under a millimeter in size. Unlike other scans, PCa cells simply can't hide from this scan.  And they didn't. 

The good news first. There seems to be no evidence of bone metastasis which truly is good news because cancer in the bones is one of the most painful cancers one can have and it's typically where PCa metastasizes to first. Never having been one to follow tradition or what everybody else is doing, I've kept my metastasis out of my bones so far. And I am truly grateful for that.

Now the not so good news. The report states that:

FINDINGS:

 

Index lesions:

1. Right upper lung: 2.3 cm (1 inch +/-),

2. Ill-defined lesion in the left hepatic lobe:

3. Left supraclavicular node: 2.7 cm,

4. Heterogenous left pelvic nodal mass

IMPRESSION:

 

Patient has numerous pelvic, retroperitoneal, hepatic and pulmonary metastases, some which demonstrate high radiotracer uptake and some which demonstrate uptake below the level of the liver.

In a nutshell, the PCa has metastasized again to the lungs, but now also to the liver, organs such as the duodenum and a portion of the rectum as well as lymph nodes both in the pelvis and in the neck area. And it's advanced rather quickly.

There are options. I could go back on hormone deprivation, suffer all the wretched side effects but probably live a bit longer. There's also a treatment based on this same PSMA scan technology and that sounds quite promising.

But the bottom line is that shit just got real.

I'm Gonna Be OK.....I Just Will Be

As mentioned in previous posts, after surviving 2020, and getting through the deaths of a couple of younger friends in 2021, I decided it was probably time that I needed to focus back on my health and my ever unwanted resident guest that lives in my pelvis.

So I started that process and here's where I'm at. This coming Monday, I have a state of the art, PSMA-PET scan at UCSF in downtown SF.  I've been to their cancer facility before and I have always been impressed.  The scan is light years beyond what was available seven years ago. It's even beyond what was available a year and a half ago with the Auxumin scan.  Needless to say I'm grateful that Medicare/my Medicare advantage plan with UnitedHealthcare will pay for this. It will give me and the medical oncologist a lot of information to work with.

What's even more exciting is that in most western countries they have approved treatment using PSMA technology. To make it very simple, using the same technology that they identify prostate cancer specific cells throughout the body for imaging, they can also identify those cells and send, in essence, nuclear bomb's to those cells, leaving the healthy cells around them undamaged. And that's always been the problem with cancer treatments; they don't just damage the bad cells, the cancerous cells… they kill the good tissue and the good cells. And that, of course, is the dilemma for most cancer patients. How much trauma to your body do you want to put up with to live a bit longer with not necessarily great quality. Consequently, this is a very promising technology. More can be found here: PSMA Prostate Cancer Treatment.

I've been very fortunate during this journey.  I have little urinary issues, although I do take a flomax every other day; my sexual function is good with medication not required for erectile function but used as a preventative/palliative measure; with regard to sexual function, orgasms are typically incredibly intense… far more so than any time in my life. But they can also be painful about 10% of the time. There is very little "pre-cum" and there is no ejaculate at all. Having the ability to be intimate with another person, even if it's a bit different than in the past, is really important to a person's emotional well-being.

The chemotherapy induced peripheral neuropathy(CIPN) is rearing its ugly head and making it harder to walk and open doors and do anything that involves my feet and my hands. Medication helps but it doesn't take care of everything..and I may also be growing tolerant to some of the meds. It's just something I am doing my best to live with and not complain about because nobody really wants to hear about it. 

My old friend fatigue is a wiley adversary. I can sleep six hours, I can sleep 12 hours and I'm still going to have difficulty pulling it together in the morning and I'm going to feel tired like I haven't slept all day. Some prescribed stimulants help that at times, but most of the time they just make me kind of jittery, tired person.  I'm not lazy..........I'm just fatigued because cancer cells suck up a lot of energy.  A lot.

Also, there's this. As do most men who were in my situation, I get a PSA test done at least three or four times a year. While nobody ever died from a high PSA test, it's a good indication, particularly if you have my history, as to what's going on in the body. In April of this year my PSA was 37. Flash forward five months and it's about 330. So it's about nine times what it was five months ago. Probably not good news.....at all.

The path forward is to get the imaging done next Monday, then to sit down with that information as well as these numbers and speak to the research guy at UCSF as well as my own oncologist and see if they have anything besides castration to offer me. Call me crazy, I'm just not a fan of losing the boys....either literally or chemically.

Regardless of how it goes, I am an extraordinarily lucky man. I have lived longer than they told me I was going to; I haven't done everything they said was "protocol"; I have used medical cannabis and I've kicked it up to a whole new level in the last month and I I'm a firm believer that I kept numbers so low for so many years because of this. But the bottom line is, I'm a very, very fortunate man. This disease allowed me to get to know myself better. This disease has made very clear the people who are true friends and those who are just acquaintances. This disease has allowed me to get closer to family which warms my heart in ways I can't express. This disease has reminded me that there are still so many people that would trade lives with me.

So keep your fingers crossed, say a little prayer or do whatever you do. I'm going to be OK.

I'm going to be OK.

 

I Have Dipped My Toe

As promised in the previous post, I am starting to focus on my own health again, which admittedly I had not done very much of the prior 14 months or so.

I've had blood work done and the good news from the bloodwork is the CBC or basically "is all your stuff working all right," came back perfect.

What was not quite encouraging was the ultra sensitive PSA test. I've attached the graph, but as you can see in basically 4 1/2 - 5 months, the PSA has tripled.  That's a lot.

Now, no one has ever died from a high PSA, and in comparison to many men with PCa, mine is quite low .....still, when the pathologist confirms that the cancer you have is of an aggressive form and you were diagnosed with metastatic cancer with a PSA of 5.2, (< 4 being "normal") the current count does indicate need for further investigation. The problem with aggressive prostate cancer is that the PSA numbers tend to be very low. Which is by way of saying that many men aren't diagnosed until their PSA is in the hundreds or thousands. Again, mine was 5.2.  My chemotherapy induced neuropathic pain (CINP) is pretty status quo although perhaps has had a slight uptick. It's my fatigue that seems to have crept up noticeably.

I'm in the process of seeing if I want to just do a repeated Auxumin scan, or if I want to push to get the newer PSMA scan. This cutting edge imaging process that seems to pick up small traces of cancer throughout the body. So that's what I'm going to push for, but even if I don't get that I'll still do the Auxumin scan because it's good to know where you're at.

This dramatic rise may indicate why going to the gym, why going to Austin, why doing so much of what I've done in the last few months has been so exhausting.  Really exhausting.

But it might not. 

More to follow as I have it but that's basically the situation at the moment.

Dipping My Toe Back in the Western/Oncology World

 I had a video conference/visit with my onc today. As he pointed out, the last visit we had was in April 2020.This kind, well educated, respectful physician, excellent in his field, has been my oncologist since I moved to the Bay Area in 2017.

He started off with just asking me how I was and the answer to that was that I was pretty normal. I had my normal complaints: Severe Chemotherapy Induced Peripheral Neuropathy, specifically my hands and my feet; fatigue that has nothing to do with how much sleep or exercise I get. I explained to him that I now had to take Flomax as a result of the radiation two years ago. But that really, all in all, for a guy that is seven years out from stage IV, Gleason eight (4+4) with severe metastasis to the lungs, I was doing pretty well. Not great. Not always easy. Yet pretty damned good.

But considering someone with my diagnosis has a 3 in 10 chance of making it five years, and I just passed seven years in March. I feel pretty damn lucky. Especially since I've lost two friends in last year who were much younger than myself to different cancers. Diagnosed and dead within a year.

So despite the fact that he thinks I should have another biopsy and reconsider making hormone deprivation therapy my routine, I'm still opposed to those ideas. But we probably will do an Auxumin scan again to look for where the cancer is. Maybe an MRI if the Auxumin scan gives us new, different detail. My PSA has quadrupled since he saw me in March 2020. So to him and to me, that means that things are on the march. But I also know that nobody ever died from a high PSA. It’s just one marker. And when I was diagnosed with that damned diagnosis, my PSA was right about 5.2. But I want to be at least palliatively proactive. 

As much as I respect this physician, and I truly do, I feel like I may need to find somebody else who can think outside the Damned Castration Box. And I'm not sure that that Oncologist exists. All I know is, between luck, my doc’s advice and my decisions,I've beat the odds.

And for that, I’m grateful.

Younger Men Afflicted. Treatments That Do More Harm Than good. Change is Needed!

 

It often seems as if prostate cancer is just a side effect of being a healthy male and getting older. Oh, and you have this reproductive gland that causes issues. Unfortunately, now it’s younger and younger men that are being afflicted with more aggressive PCa. I was 52 when I was diagnosed seven years ago, Gleason eight/mets.

But these days it’s not at all uncommon for me to read comments or get emails through my blog from men in their 40s who have very aggressive cancers. This is no longer an “old man’s“ disease. The statistics bear that out over the last 20 to 30 years. Indeed, the incidence of PCa in men (boys! BOYS!) age 15-40 is increasing at a rate of about 2% a year.

I’m a firm believer that one must look outside the proverbial box. 

What Western medicine has had to offer, at least up until recently, has always been slice/dice, fry or castrate, either figuratively or literally.

That must change. You can’t take a 45 (or 52...or 60, etc) year old man who is quite healthy, take away his testosterone, make him incontinent, make him impotent, weaken his bones, take away his muscle, give him hot flashes, make him extraordinarily emotional and subject him to all the horrors, mental as well as physical, that go with either surgery, hormone deprivation or radiation and expect his body or mind to thrive. 

The approach to treating this prostate cancer must change.

Vaccinated, Cautious, Enjoying a Return to "Normal" and Updates......Post Covid (?) Report

It's been 3 months since I last checked in so it's time.  I've had two onc appointments over the last three weeks; one was canceled due to my error and one was canceled by the physician. We are working to get that rescheduled and I'll tell you why I want to speak with him but let me first just go over the basics. 

As per usual, the We're Not Talking About An Ingrown Toenail disclaimer applies. If you prefer not to read about male genitourinary function and or bowel habits, please feel free to click the lil button and close the page. Now :)

As far as my overall health, I think I'm doing pretty darn well. No new pains to report. I've had a fair amount of energy over the last 2 to 3 weeks, although the last two or three days have been kinda rough. But I am happy to report that I think the reason it was rough is that three out of five days prior to that, I made it to the gym for the first time in I'm sure two years. Didn't do anything crazy or try and lift heavy weights. No, I just did exercises that would kind of wake up my 2020 atrophied body. And I think it kind of wore me out. But I'm starting to make it a routine so this is great. I could stand to lose 10 pounds and really 15 or 20 would be great. But most importantly I need to get some strength and flexibility back.

OK so for the below the belt stuff. Urination is quite good as long as Flomax is on board. Without that medication, it's stop/start and a prolonged painful process. I did manage to see my favorite urologist, Dr. Jeremy Lieb, and he said everything looked good to him although someday...maybe... we might have to look at doing kind of a roto rooter procedure. He assured me that I would be checked into the hospital and heavily sedated. He also seemed to continue to be in favor of the idea of taking 20 to 40 mg of sildenafil daily just to ensure regular blood flow to the penis. Mr. Happy needs blood just like one's big toe!

Speaking of Mr. Happy, he's doing rather well. Two years after radiation, I'm happy to say that even without the prophylactic sildenafil, Mr.Happy can still rise to the occasion although not quite with fervor of an insatiable 20-year-old, yet with regular nocturnal and morning tumescence as common as they would be for most healthy males. Orgasm is still very possible and actually intense to a level that is actually quite painful about 15% of the time.  The other 85% is unmatched in my lifetime; intense to the point I'm weak after. There is no longer ejaculation or production of semen.

Something that has been of concern is what I have assumed to be an internal hemorrhoid. I had written it off to long-term use of narcotic pain medication. Not painful, not really bothersome other than the fact that it bleeds during during BMs about 70% of the time. After deciding it was time to get back into dealing with things like this post 2020, I went and saw a gastroenterologist by the name of Dr. Salvador Guevara. Good doctor, easy to talk to, obviously knowledgeable, just the right amount of humor and very respectful during examination as well as consult. Indeed I do have an internal roid and we are going to try and deal with naturally as opposed to ligation via banding. I found it rather interesting that as Dr. G was examining me his first question was," have you had radiation?" I advised that I had two years earlier and he said he could certainly tell. That was it rather stark reminder. Regardless, I'll see him again in about a month after I've had time to try natural remedies.

My old friends CIPN (Chemotherapy Induced Peripheral Neuropathy) and fatigue accompany me wherever I go. Fortunately I am fairly used to them and they are generally well controlled with medication.

So that's the physical stuff.

What I want get back with the oncologist about it is new treatments that show a lot of promise. Treatments by which radioactive molecules specifically target prostate cancer cells......PCa Smart Bombs if you will. New, improved treatments that use immunotherapy. There's been quite a increase in research and progress in this area of treatment and I've been fortunate enough to live longer than the estimates said I was going to. Who knows, maybe I can take advantage of some of it.

The hitch is that with many of these studies is they usually insist that you also take hormone depriving drugs. They want you castrated. And I refuse to believe after seven years of living with this disease, six of them of with testosterone coursing through my veins, that these new therapies can't be effective unless you also castrate a man. Medicine must come up with and the scientists simply have to figure out new, non-damaging treatments for this disease. They must think outside the box and quit jumping immediately to surgeries and drugs that are so damaging to a man both physically and psychologically.

That's what I want to be able to talk to the oncologist about. This will be the first time we've seen each other or communicated since March 2020 and I'm hoping that he can give me some guidance and think outside the box a bit. 

There is no doubt in my mind that if I had agreed to and taken all the treatments that various oncologists had suggested and, in some case, all but insisted that I take, that I would be a very, very ill man .....if not dead by now.

I'll check back in after I have that visit and I hope to be able to post some of the treatments I've been looking at and will talk with the good doctor about. As always, if you're out there, diagnosed,  scared, don't know what to do, who to talk to or where to turn, please don't hesitate to reach out to me.

Because I know exactly what it feels like.

Why I Chose To Forego Androgen Deprivation Therapy

 When a man is diagnosed with PCa, especially metastatic PCa, the first go to for oncologists is usually Androgen (Hormone) Deprivation Therapy (ADT) which can be accomplished in men one of two ways: 1) orchiectomy or the surgical removal of the testicles or 2) taking drugs that turn off the production of testosterone.  Fortunately, most patients choose the 2nd option.

When I was diagnosed in March of 2014, I was told in no uncertain terms by more than one physician, that I had an aggressive PCa and it was already in both lungs as well as pelvic lymph nodes and seminal vesicles.  I was initially offered ADT using Lupron, which was administered 2 times over the 8 months I took it.  I handle injections and blood draws like a champ, but the Lupron injection was unusually painful both times.

At the end of the year, after an 8 month trial as well as going through 6 rounds of newly approved chemo for PCa with mets, I decided I would no longer take ADT.  It was simply too rough on me physically but even more so, mentally.  The malaise, the depression, the loss of muscle and gaining of body fat, the hot flashes, the cold flashes and my emotions run rampant as well as cognitive dysfunction...all of these things proved too much for me to consider living with the rest of my life.  

Did it negatively affect me sexually?  Yes.  After about 3 weeks of being on it, I had no sex drive or desire. I didn't even think about it and had to literally write myself reminders to be intimate with my husband.  But that wasn't THE major reason I wanted my testosterone back.

"Fatigue, loss of muscle mass and bone density, loss of body hair, emotions played havoc with, weight gain, hot sweats and flushes. Effectively it feels like you’ve become a menopausal woman overnight, and that simply magnifies the loss of masculinity."

A female oncologist I consulted with a couple of years back before SBRT treatments made the statement to me that you "can't take a relatively young man's testosterone away and expect him to thrive.  It's an important hormone for more than just sex."

I may have to go back on ADT at some point as a palliative measure if/when my unwanted resident decides to metastasize to my bones and my palliative doc and I have discussed limited use of it.

But only if I see no other way.

Meanwhile, I am quite empathetic with menopausal women.

https://prostatecancer.net/living/hormone-therapy-sex-life?utm_source=weekly&utm_medium=email&utm_campaign=307b2076-5695-40c4-8f22-cca66a5d118b&utm_confid=sovkmsupw&aGVhbHRoIHVuaW9uIGJsYWg=569545217a1113b029a72ef9f8892817e232093fe306442f269a3bc295d82886

Survival. It Can Be a Good Thing

 

I'm grateful to say (knock the proverbial wood) that like those of you reading, I survived 2020, COVID and isolation.  I plowed through the lack of interaction with others as well as exercise, lack of nutritionally diverse meals and overall generally less than ideal circumstances, particularly for those of us that live with chronic, serious conditions.

I survived an assault by a bail agent in my home who was looking for someone else. Survived some type of mild blood poisoning.  Survived an abusive landlord situation.  BUT!  Moved into a loving, family situation recently and am so very grateful.  Survived.

I survived losing several people (none due to COVID, but too many to Big C), including one of my dearest friends ever. Pancreatic and took almost exactly 1 year to be diagnosed, "treated" and die. This one will take a while to grieve over. 

I've survived  And so have you.  Good on each of us.

I'm three weeks out from Dose 1 of Pfizer COVID vax and will get the second in about ten days.  By the end of the month, I should be well protected but will continue to follow masking and sanitary guidelines as I refuse to be a spreader.  I will get out, but still with caution.  Perhaps a bit more confidence?

But doing so means I need to see where things are at with my unwanted guest and my last in person visit with Palliative Doc/Advisor and set of bloodwork was in Sept/Oct 2020. I got the blood work done yesterday and see the P Doc Monday.  Here's what I know from the blood work:

    * my basic CBC and baseline metabolic a look good.

    * PSA is up, but not as much as I expected (yay?).  From a 26.6 ng/ml in Sept to a 37.4 this week. 

Given my poor diet and the stress of the last few months, I expected it to have jumped substantially more than that.  It'll be interesting to see what the Doc says.  I'm guessing we'll do some additional imaging just to ensure that no tumor is getting ready to perforate anything.

How have I been physically?

Overall pretty good.  The usual culprits, fatigue and foot/hand/limb pain remain and have gotten a bit worse.  I still keep walkin'. As a friend reminded me yesterday, fatigue and being "kinda tired" are two, distinctly different things.  Neuropathic/joint and bone pain are also a different kind of pain than arthritis, etc.

I continue to urinate rather well particularly if Flomax is on board....so I try never to run out. Sometimes a bit strained and/or difficult/extraordinarily painful, but fortunately those instance are not too often. Very little, if no urgency issues.

Erectile function is good, even without ED meds.  I do take 40 mg of sildenafil daily (like vitamins!) to ensure blood flow to my old and valued friend.  But I'm grateful to have good function for a 59 year old, 7 year PC patient.  The odds are against men, even without PC, in this area.

I have some mild bleeding during BMs at times but I'm 99% sure it is a small, internal roid that is a result of using pain meds for sometime.  I'm trying to heal it naturally because proctologists......well....yeah.

All that said, for a guy that was told he didn't have long even IF he followed all physician recommendations, I'm doing OK. That was 7 years ago!  It makes me wonder if so much of what men with PC are offered/put through really makes a difference as to longevity.  The studies suggest not and I chat regularly with men, older and younger, who have followed every piece of doc advice, from radical prostatectomies to multiple hormone drugs (ugh!) to implanted radiation to orchiectomies (look that one up).  Each of these could have it's place, but I fear that too often men are steared these directions for the sake of profit rather than what the evidence is.  Fear of death is a powerful motivator.

What I can tell you is that I did the chemo for 6 rounds as well as 8 months of castration "therapy" the first year and then, 5 years later, did 5 rounds of SBRT (look it up...highly focused, high intensity atomic assault but almost 100% on just the target).  That's it.  That's all my "western" treatments. So far, so good.  The side effects were less than I expected, I have testosterone (* to all those who say, "You look SO good"....I think if I have even a remote claim to that, it's because I have T in my veins.), I hurt but I've hurt for most of these years. I'm fatigued but it's become just a part of life.

Is it high dosage cannabis/cbd that has slowed all this down?  I don't know but I have little to no other explanation.

I'm fortunate.

So I survive and am grateful.  How this has worked out compared to what I was told to expect are not the same.  I hurt.  I'm drained much of the time.  But I can still get out some, do normal tasks, I walk like a nerd in pain....oh, I am a n ierdn pain.  But I'm doing quite well all things considered and feel so very fortunate.

Readers can always feel free to contact me.  I think the blog is around 40+ thousand views from around the world and I've had the honor of answering numerous men's and women's questions.  I'm an open book so feel ok in reaching out.  I've become far more of an expert on the topic than I ever wished to be ;)

Best wishes and peace be with you.

59 and I Am Still Here! Not Without a Few Bumps, But Still......

“Gratefulness is the inner gesture of giving meaning to our life by receiving life as gift.”

— David Steindl-Rast

On Tuesday, November 3rd of this year, the United States elected a new President and I celebrated my 59th run around the sun.  I am extraordinarily delighted on both accounts.

Last month I underwent a full body bone scan and an MRI of the prostate as my physician (Palliative doc in this case) and I attempted to track down what was driving the rapid rise in PSA since the beginning of the year (March - 12.6 ng vs October - 26.6 ng...see previous post). 

The best news is that there is zero sign of any bone mets which is the typical metastasis path for PCa cells.  It's also one of the most painful complications of the disease.  I'm told it's like having multiple compound fractures that hurt 24/7.  So this is extremely welcome news. 

The not totally unexpected news is that lymph nodes on both left and right have become even more "bulky", having doubled in size since March. Additionally, the extra-capsular extension on the right side is still there to some degree and recurrent disease often occurs at the site of the prior tumor. This MAY be what is happening here and driving the PSA numbers.

In a nutshell, the cancer is active but it's difficult to tell where right now.  As a complete cure is not in the cards at this time, I accept that increasing PSA numbers will be part of my future.  My hope is simply to be proactive and head off anything like the potential of a cancerous tumor extension invading the bladder or rectum and, currently, there doesn't appear to be any danger of that as was the case last year. Also very good news.

So, relatively speaking, that leaves me doing pretty well for a patient that hasn't followed the majority of  his oncologists advice.  More precisely, since the end of 2014, the only physician suggested, "Western" treatment that I did follow through on was the 5 session SBRT. 

My only other treatment has been high dose cannabis in both oil and flower form with a keen eye on CBD/THC content and ratio.  Is this what's kept the beast at bay for as long as it has been?  I have no other explanation. I have high/normal testosterone levels which frighten oncologists when it comes to PCa. Other that 2014 and 2019, I've had no standard treatment (i.e. hormone deprivation, surgery, radiation, cryotherapy, etc).  The only constant has been cannabis.

So those are the facts currently. But what I want your take away from this post is this.  Do I hurt?  Oh you betcha; the neuropathy in my feet and hands is relentless and only through pharmacologic intervention am I able to do the amount of walking that I do. The odd pains elsewhere (possible "transference" which is common per the doc) can take my breath sometimes. I try not to bitch about it too much because everyone tires of hearing about it as they can't really see it and I tire of feeling and living with it.  How I would love to be able to run like I did before all this. I literally get a visceral jealousy when I see guys closer to my age running.

But I CAN walk! I'm able to work through that. I have Medicare and therefore, I have a wonderful Palliative doc who knows his stuff and my pain is kept pretty tolerable the overwhelming majority of the time.

It would not have been surprising if I'd had urinary difficulty by now.  After the SBRT sessions, I did develop some pain and urgency but that has largely subsided and what hasn't is controlled by meds. I read about men who've had the prostate fully removed (an option that makes no sense once the PCa has metastasized...my case) or nuked over 30 or 40 sessions and the horrible, ongoing incontinence and ED they experience.

Although nuked over five, higher dose sessions, I still have some portion of a prostate. I have zero incontinence. I don't ejaculate any liquid to speak of but I DO experience the sensation (aka: dry orgasms....no muss, no fuss?) and erections do happen spontaneous sometimes during the day and are common nocturnally, which is a comforting thing for any 59 year old man. Especially one who has rolled the dice with radiation). Actually, it's a very healthy and comforting thing for a man of any age.

Let me repeat, I have no incontinence issues and sexual function and sensation are quite good.   I'll take that as a win!

I'm taking it all as a win!  I'm not supposed to be here.......but, I'm still here! Does the Chemo Induced Neuropathic Pain (CINP) get in the way of things and is it chronically painful?  Oh yeah; it's like taking the arthritis I already have (can you say part time catering/bartending off and on over 3+ decades?) and compounding it with what we call in Texas, bobwire, and having the wire wrapped around your feet. That's my feet 90% of the time. 

Do I get fatigued easily? Oh hell to the yeah. But with planning, I can get what I need to done.

But I'm still here! 7 years in, 2 years more than the estimate IF I did all the docs said I should and 5 more than if I didn't.  But, in fairness to them, my case has followed no "usual" course, as I've been told by no less than a dozen physicians of different stripes

Add a little more financial and housing security, warm love of family and friends and far less toxic national news and, well, who knows?!

I'm 59, I'm still here and very grateful for my good fortune!

It's Always About the Numbers

 I visited with my palliative care doc three days ago.  He's really the only physician I see regularly and even with him, it's only every two or three months.

We were following up after two months, months in which I experienced a 1 night hospital stay due to infection as well as bone x-rays after inexplicable pain in my hips/thighs.  No signs of mets from the waist down, thankfully.  There has also been an increase in fatigue.

My PSA, however, is doubling at an exponential rate as can be seen here and was 9 in March and 26.6 in October

So my PSA has more than doubled in the last 7 months or so +/-.  PSA doubling time is an indicator of PCa  (prostate cancer/metastasis activity).   My physician stated that the more aggressive the cancer, the lower your PSA is going to be.  Since so many men have readings in the (literally) thousands, it would seem that I'm doing quite well.  My PSA when diagnosed in 2014 was under a 5 and has never been higher than it is now. So what does this mean?  The cancer is active.

As my primary goal is preemptive, palliative care, I spoke with my palliative physician and he suggested we do a bone scan as well as a full body MRI.  Again, the goal is not to cure.....there is none at this time.  The goal is to try and prevent very painful complications from the tumor.

And with that, let me run down symptoms and basic vital signs.

Fatigue:  Exacerbated  in the last 2-3 months.

Pain: My old friend, chemo induced peripheral neuropathy (CIPN) remains loyal and by my side.  Pain killers keep it to where I can walk a good deal without it being excruciating.  It's my biggest regret from chemo. About two weeks ago, I began to have severe, deep pain in my hips, wrapping to the front of my thighs.  XRays show no sign of metastasis. A relative once asked as we were walking, "Why are you limping?  Just because you can?"  The relative meant it in a playful way, but my thought process was, no dammit!  I'm limping because my feet feel like they are wrapped on barbed wire.  Chronic pain is something others can't see and have trouble understanding. But it is real and it is disabling.

Pulmonary function: By and large good.  Here in the Bay Area, we spent much of last month indoors as tons and tons of poisonous smoke filled the skies.  One night I began having difficulty breathing, so I sucked it up and went to the ER.  Quickly tested for COVID, I was determined negative but the ER doc was concerned enough, he asked me to stay for observation.  I did, it was a blood infection and I was released late afternoon the next day with fistfuls of antibiotics.

G/U function: Urination is good and not problematic as long as I take the generic Flomax.  Sexual function is better than I anticipated (after the SBRT) with nocturnal erections taking place more often than not.

Bowel function:  No problems

Emotional:  Thanks to an increase in my prozac dosage, little is getting me down mentally.  From a dear relative that died to the covid craziness of the last 7 months, nothing seems to be getting me down.   This its important.

The increase in PSA is noteworthy and indicates something is going on. We'll do the 2 scans and see if we can see what it is. 

I'm just in a good place, whatever happens. I have a roof over my head, money in the banks (thanks to as least a couple of generous friends and the US Congress), food in the fridge and decent clothes to wear.

I am a lucky man and I don't take the extra time I've been given for granted. 

Just Holdin' On Like Everyone Else

 2020 and Holdin' On Like Everyone Else!

This year.  This year!  

I haven't been quite sure how to write this post. The only visit other than with the oncologist in March, has been with my palliative physician and we met in person for the first time since March about two weeks ago. This is by way of saying that my medical testing and contact has been very limited for many months due to avoiding COVID and since that's the case, let me try and give you an update as best I can. I'll start with the physical facts, touch on mental health and finish with the impact of this year on me. All while maintaining a sunny disposition and rejecting any thoughts of doom 😉.

The Physical

Fatigue - My old friend is ever present on a day-to-day basis. It follows like an unwanted companion that one can't seem to shake off or escape; the guest that got invited by mistake and just will not go home. It matters not if I've gotten four hours or 10 hours shut eye, very sound or quite restless sleep, I still have to struggle to find the energy necessary to do even simple tasks at times. One could certainly say I am very tired of being fatigued (I'm tired of being indescribably tired?).  But, it's my normal now, so I try to budget energy expenditure because the well runs dry all too easily. Palliative doc says normal part of the disease.

Pain -  The neuropathy is a constant and, as mentioned previously, is most painful in my feet and hands.  A mixture of numbness and stabbing/sharp pain, heightened sensitivity to hot/cold and sometimes, just a throbbing ache.  Some days are not terribly bad. But most days the chronic pain is a constant reminder of the cost of doing business with oncologists and chemo-therapy. But I try daily to push through and get some type of walk in even though I know I'll pay a price in foot pain during and after. Pain killers take the edge off enough I can usually do the walk, run needed errands without bothering others as well as sleep and not just be in a fetal position groaning. A plan helps keep me on track with meds.  A slight hernia at the bottom of the pelvic floor adds an additional, interesting pain sensation to all this.  All that said, I do not have bone mets nor is the tumor pressing on anything, both of which can be wildly painful and for this, I. Am. Grateful.👏

PSA - The last reading was in March of this year and it was a 12.6. I will probably get another PSA drawn in the next month and I assume that the numbers will have likely increased.  Again, part of the disease process.

Breathing - Ima preface this by saying the area I live in has been dealing with HEAVY amounts of wildfire pollution for almost a month now. I can't say that I'm having trouble breathing, but I can say that I am often hyper conscious of my breathing every day and sense that it's "different".

Uro/Genital - Urination is good as long as I remember to take the generic Flomax daily.  Without it, I regret having not taken it every time I pee.  Sexual function is reasonably good given age and treatment history (not that it matters during a pandemic :) ).

Chemo Brain - Forgetfulness it is all too common, as it has been since chemo. I find that it seems to occur more frequently. Perhaps that's just chemo brain coupled with getting older. I don't know. But I do know that it's embarrassing to be in the middle of the sentence and completely forget what you're talking about. I also miss my ability to wildly multitask. Now I have to focus on 1 thing at a time for the most part.

COVID - Negative, although I may have brain damage from having a 4 foot swab rubbed around on the insis back part of my skull.  Next time I'd like to just give blood or have a colonoscopy or something less disturbing 😆

The Mental

Depression - I have been dealing with situational depression that seems to have become very chemical as this year has drug on. I mean, after all, there are so many situations in 2020 from which to choose, right? All of them in 7 months has been a bit much. Medicated with good old prozac, looking for good therapy that insurance will cover at least part of.  If this year has taught me anything about myself, it's taught me that I need at least a certain level of human interaction on a regular basis. Even if it's as simple as making small talk with the clerk at a store, I need that. I also need to hug a person every so often.💔  The Great Pandemic has made that difficult.

But, I keep pushing forward.  Having beloved relatives close by now is quite reassuring and they are huggers which is wonderful.

In summary, I can say that this is been my most challenging year since I was diagnosed in 2014. It's challenging in new and, at times, very difficult ways. When I started quarantining back in the early part of March, I felt like I had an advantage over so many in that I had, by necessity, become used to being alone for stretches of time. That seem to bear out for the first month or two and then I begin to realize that I was far more affected by the isolation than I expected I would be. This certainly isn't unique to me as report after report indicates that a fairly large chunk of our population is dealing with anxiety and depression brought on by the happenings of an insanely strange year, pandemics and what they bring as well as a the ever disgusting news out of Washington. Just a wee bit depressing.😕

But I try and remind myself that in 2014, I was told that even if I did everything the oncologists recommended, I would be lucky to be around in 5 years.  I was told that if I didn't do everything they recommended, I was looking at roughly two years.  So I did the initial treatments of hormone deprivation and chemo therapy that first year, after which time I decided I could no longer do the hormone deprivation and the chemo was a one shot deal. The only other western treatment that I've had was the radiation to decrease the size of the tumor for palliative reasons earlier this year. (i.e. let's try to avoid stomas and bags).

That's it. I read about so many men who are on two and three different types of androgen blockers and suffer all the side effects that come with them. I read about men who have had an orchiectomy (surgical castration) and I shudder at the very concept. March of next year will mark seven years since I was diagnosed and the only thing I've done other than the treatments mentioned, has been to continuously consume some form of high content THC/CBD cannabis. As noted above, I often don't feel too great. But I am here, still,  for almost 7 years now.

As my docs say, "Whatever you're doing, keep doing it."

I am.

Struggles in the Annus Horribilus

It has been quite the year and it's only the beginning of August.  

I've had a rough couple or several months (time is quite abstract in 2020) and I'm working on a post to update and that will follow.

In the mean time, each of us knows someone with cancer.  Each of those people, regardless of the cancer, it's location, severity, stage, etc. goes through struggles unique to them.  I certainly have.

So please take a moment and read the following.  Thank you.

https://healthstoriesproject.com/cancer-struggles/

PS: "Chemo brain is real!"