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!"

$5k PET/CT Full Body Scan with Auxumin Contrast - Results, Thoughts. Decisions.

Yesterday I went to a facility and had a full body PET/CT scan, this time with the $5000 addition of a radiotracer called Auxumin that specifically hitches itself to PCa cells wherever they are in the body. It exposed me to additional radiation which I probably don’t need as it’s gotta be my 10th or 12th scan (14th?! More than 10 anyway Ha!) This is the first one where they injected me with radioactive tracers/compounds and then gave me the warning that I’d literally be radioactive for the next 24 hours and to stay away from other folks, especially small children and pregnant women during said hours. True story.

Anyway.

The report came back quickly today and Dr. Lo posted it for me. We also arranged for a phone visit late this afternoon as opposed to me waiting for 10 days to go to his office.

 A couple of quick definitions; radiotracer is the stuff that was injected into me the IV right before the scan. It’s an expensive radio isotope that hitches itself specifically to PCa cells. Pulmonary modules are, given my history, PCa Mets that have hit my lungs but aren’t large enough for the radiotracer to latch onto

“Study Result

Impression

IMPRESSION:

1. Abnormal radiotracer uptake throughout the prostate gland, consistent with tumor.

2. Radiotracer avid pelvic lymphadenopathy, increased in size from 2/15/2020.

3. Subcentimeter pulmonary nodules measuring up to 4 mm, new from 11/5/2018, without focal radiotracer uptake at this time, however, raising concern for recurrent pulmonary metastases.

4. No additional sites of distant metastatic disease identified at this time.”

So, you may be asking yourself what does all that mean? Let me try to explain.

Number 4: No additional sites of distant metastatic disease identified at this time.  This is the absolute best news in the report! The last thing I need is the cancer landing on my liver or in my bones or in my brain. Truly good news, Truly good news!

Number 1: Abnormal radiotracer uptake throughout the prostate gland, consistent with tumor.

I was surprised to see the gland even mentioned as I’ve been under the impression we had pretty well eradicated it along with the extensions that were coming off of it. Turns out that’s not the case which is why the radiologist mentioned it. Despite my radiation efforts of a year ago, there’s still a lot of tumor growing in what’s left of my prostate. 

Number 2:  Radiotracer avid pelvic lymphadenopathy, increased in size from 2/15/2020.

This really came as no surprise as we knew a couple months ago from the MRI that the lymph nodes in the pelvis were, “bulky“ as stated by the MRI radiologist. Now they light up as hotspots filled with PCa cells hence the word “avid”,  and are growing rapidly. This is not good news.

Number 3: Subcentimeter pulmonary nodules measuring up to 4 mm, new from 11/5/2018, without focal radiotracer uptake at this time, however, raising concern for recurrent pulmonary metastases.

When I was diagnosed six years ago, the reason my cancer was stage four was because it had already metastasized to my lungs. Six rounds of poisonous  chemotherapy and eight months of hormone deprivation took care of the mets in my lungs then. But, they’re coming back.

So what all this means, based on everything I know about my history, based on the conversation with my trusted oncologist this afternoon, is that I’ve reached the point where there’s nothing Western medicine can do anymore that doesn’t further erode my already crappy physical state.  I’ve also reached the point where disease is advancing more rapidly and now on three fronts.

He offered, and I agreed, to go see the researcher at UCSF one more time as well as Dr. Lo’s associate, radiation oncologist Dr. Chao, and get their feedback. The researcher at UCSF can let me know if there are any new studies available that don’t involve things to which I will not subject myself. Dr. Chao can advise me if there’s anything radiation can do or, probably more importantly, how we go about using radiation for palliative reasons as the cancer progresses (i.e. bone mets)

Since the radiation last March a year ago, I’ve lost right at 50 pounds without even trying. The neuropathy in my hands and feet is a never absent and always a painful presence in my life. Fatigue is a constant battle. It makes no difference how much or little I’ve slept. Yes, I’m tired. I’m really, really tired.

I get winded very easily. Focusing on more than one thing is virtually impossible. My hands feel shaky at times and the physician’s comment today was, “You are symptomatic.”

Yes, yes I am.

And so the process moves on down the road.

An Oncologist Talks About Stage 4 PCa with Mets and End of Life

I found this via a website called "Quora". 

One reason I moved to California and am working so hard to stay here is because California has a law known as the End of Life Option Act.  This allows a terminally ill patient to end their own life with a legally prescribed lethal amount of barbiturates.

Because I don't plan to suffer away like what is described by this oncologist:

Gary Larson, MD - Have Treated Over 10,000 Prostate Cancer Patients

Answered Feb 22, 2018 · Upvoted by Margarita Orlova, I am biologist in profession and a frequent patient myself

I currently have a patient taking the equivalent of 3,500 percocets per month to control the pain from stage IV prostate cancer. (1) PEOPLE ARE FOND OF USING THE TRITE EXPRESSION THAT MOST MEN DIE WITH PROSTATE CANCER RATHER THAN OF IT. THIS IS WHAT IT CAN BE LIKE TO DIE WITH IT.

Prostate cancer preferentially spreads to the bones, although now that stage IV prostate cancer patients are living longer with chemotherapy and newer treatment modalities, we are seeing spread to visceral organs as well (lung, liver, brain, etc.). They also have more time to develop the conditions described below.

Bone metastases are usually asymptomatic when first discovered, but over time, they erode the healthy bone, destroying nerves, and causing excruciating pain. Men will often have dozens or even a hundred metastatic sites that each hurt just like a broken bone, not to mention compressing spinal nerves, causing pain in the entire distribution of those nerves. Some bones do break in the process.

Skull base metastases deserve special mention. Compressing the cranial nerves as they exit the skull base, may paralyze cranial nerves causing the inability to use the eye muscles, facial muscles or swallowing muscles. If one’s facial muscles are paralyzed, they can’t blink, which leads to keratitis and blindness (unless the eyelid is partially sewn shut - or weights are surgically implanted in the eyelid to allow it go down all the way. If one can’t swallow, they need a feeding tube (these men are fully awake and functional, but will starve to death without the ability to swallow food - not the situation where a feeding tube is placed to keep comatose patients alive, which is a completely different issue). Not being able to swallow saliva means they must spit 1–2 liters of it every day, or have a fistula placed so it drains out of their neck. Compression of the trigeminal nerves cause pain in the distribution of that branch or branches - it’s like having a toothache in all your teeth at once - or that same intensity of pain in the upper part of the face.

While cancer spreads to the rest of the body, it’s also progressing in the pelvis, where it started. Bladder invasion causes intractable spasms and a constant painful feeling of needing to urinate. A catheter becomes necessary - usually placed through the abdominal wall directly into the bladder, which is less uncomfortable than having it go through the penis for months or years. The cancer can grow posteriorly to close off the rectum, requiring a colostomy - or just causing death from peritonitis. (A colostomy doesn’t do anything about the constant feeling that you have a butcher knife stuck up your ass.) Obstruction of the ureters requires nephrostomies (urine draining out of the back - from where the kidneys are). A well informed patient may refuse nephrostomies and die a relative painless death from renal failure in the next few weeks or months.

What about Hospice, you might ask? Hospice is generally reserved for patients with a 6 month life expectancy - these men may live for a year or two with these problems.

Not all patients get all these symptoms, but just pick a few of them and imagine living with them for 2–3 years.

Many men who die “with” prostate cancer may have liver failure, bone marrow failure, heart failure, renal failure, etc. listed as the immediate cause of death on their death certificate. Listing these diagnoses as being secondary to prostate cancer may or may not result in them being counted as a prostate cancer deaths.

The 27,000 men officially listed as dying FROM prostate cancer last year may, in many respects, be the lucky ones. They have come to the end of living with it.

You can see why I support PSA screening for prostate cancer. 90% of the men who are cured of prostate cancer had their disease caught early by screening. Those who don’t are playing Russian roulette with fate described above.

It may be necessary to place a weight in the eyelid or sew it partially shut due to facial nerve paralysis caused by skull base metastasis from prostate cancer.

A nephrostomy tube placed due to kidney obstruction by prostate cancer.

Spinal fractures due to prostate cancer.

Aside: I didn’t mention the morbidity from treatment - living without testosterone for years, side effects from chemotherapy and a variety of newer side effects we are discovering from the newer drugs that are now available to treat prostate cancer.

(1) 320 mg of oxycontin per day + 240 mg immediate release oxycodone = 560 mg/day X 31 days = 17,360 mg/month - which is the equivalent of 3,472 Percocet-5’s per month.

PSA Numbers In

Blood work I had done at Dr. Lo's office last week has come in piecemeal.  This morning the PSA finally came in. It's a 12.6 ng/mL.  It was at 13 before radiation and dropped to a low of 5.4 after radiation last year.

The Onc's View of the MRI and Next Steps

Met with Dr. Lo today.  He confirmed much of what I gleaned from the last MRI report.

Yes, the original tumor and much of the prostate is destroyed and, according to the report, the urethra is normal ( I beg to differ at various times during the day).This is good!

But the take away from our appointment was that the swollen lymph nodes are most certainly PCa (regardless of where the cancer migrates/metastasizes to, it's still know as __________ cancer...i.e. wherever it started).

The first question is, have PCa cells metted (I don't know if that's a word, but I am hereby creating it! I can't ever spell metastasized anyway.) to any other parts of the body?  I'll be evaluated by a full body PET scan with an Axumin injection to see if the little boogers have traveled elsewhere. 

One of two possibilities here:


1) No sign of mets anywhere else in the body - best situation.  Then we can look at nuking the 2 "bulky" lymph nodes and then wait to see what other whack-a-mole pops up

or

2) There are mets to bones, lung, brain, etc.  If this is the case there's some possibility of  clinical trials but most want you to be on hormone deprivations"therapy" as well.  I won't do HDT. If this is the situation, then there's two choice: a) go on HDT or b) let the cancer run it's course.

So either way, cancer is on the move in my body.  It explains a lot of the fatigue and pain "down there".

Dr .Lo also is issuing a referral to a G/I specialist because my BMs of the last 2-3 months have almost always involved some blood.  I told Doc Lo that I figured maybe it was an internal hemorrhoid as the blood is always fresh, not old or clotted.  He said, well maybe......but you also had radiation that may have affected the area.  So I'll have an anoscopy to look forward to very soon.

That's all I know folks.  It's enough for the moment.  I think I'll have a glass of wine.

The Good News, The Bad News.

Its update time. Let me review how I’ve been feeling, and then I’ll go over what the latest MRI indicates.

Ever since I was in Texas, like right after the auto accident 11/10/19 and then on into 2020 here in California, my body has just hurt...... more than usual. It’s like a general bone ache, my joints feel arthritic and often times as if something sharp is being stuck in them. The feet are the usual issue, with severe pain after any excessive walking, while at the same time the top of my feet have a numbness to them. Same is true with my hands and my arms. These chemo drugs come at a cost and I'm not just talking dollars and cents.

Fatigue is an old nemesis that has not gotten any better almost a year out from the radiation. I just have to try to sleep when I can and try and make sure it’s at least seven hours a whack and I also try to pace myself as to what I do each day. If I don’t, I can find myself overextended after a couple of days and walking like a 90-year-old because of the pain in my lower extremities. Therefore, it requires pacing. And it’s not so much my back that that hurts me; what hurts me as a result of the different treatments, particularly the chemotherapy agent, docetaxel, is neuropathic pain as well as the damage the treatments have done to my bones and joints.  My new normal
.
Pain during urination is kind of hit and miss thing. I can almost always bet that my first leak of the day will be impacted on how full my intestines and colon are. If they are full, it’s going to be difficult and probably painful. On the other hand, sometimes I’m just out in public and stop in to use the men’s room and I have to I’ll grab onto the divider and grip with all my strength as it feels like little minnows that are camouflaged with razor blades are running from inside me out. There is no rhyme or reason.

The small hernia that a CT scan picked up in the area between my right leg and pelvis continues to ache and cause pain. I just don't know that I don't want to be cut on anymore.

Emotionally, I must be honest that I’ve been rather depressed. To borrow a rather trite saying, I'm sick and tired of being sick and tired. On top of that, it seems like every time I turn around someone else close to me has been diagnosed with some form of cancer. And that hurts. A VERY dear friend had 80% of her pancreas removed 2 days ago.  And she's young. My sister in law had triple bypass/open heart surgery 4 days ago; no, not cancer but still. I also am trying to stay away from the news as much as possible because the ravings of the lunatic that is currently our president drag me down as well. I’m trying a couple different types of medications to combat the depression.

Sexual function is good.  I often awaken with morning erections (a very healthy thing for a male) and sildenifil is available and highly effective if a moment becomes intimate.  My semen production is virtually nill and there has been no further blood in it.  Good news.  Orgasms are still possible and quite intense.  Did I mention I chose to keep testosterone in my body against ALL medical advice?

MRI Findings

As usual, there’s a good news/bad news approach to this MRI.

The good news is that the main lesion in the peripheral zone of the right midsection of the gland has had a reduction in size. The not so good news is that there is still a mass at the right base of the gland as well as soft tissue extending out well beyond the prostate capsule (this is what’s called an extracapsular extension). It's a problem.

The radiologist also mentioned that there’s been a development of aggressive lymph node involvement this time around. These are “highly suspicious for metastatic lymphadenopathy.” Like 5 out of 5 suspicious.  Not so good.

In summary

So it appears that we have damaged the prostate and at least reduce the size of one of the tumors via the 5 SBRT radiation treatments  But the extracapsular tumor seems to be on a bit of a roll which may explain some of the pain that I’ve had that I didn’t have a year ago. The new, dramatically enlarged lymph node is of concern.  The radiologist wrote, "There is an enlarged, bulky, heterogenous left external iliac lymph node which is new since the prior study, measuring up to a maximum of 17 x 24 mm (20/25). There is another bulky, heterogenous, new lymph node along the right pelvic sidewall, measuring up to a maximum of 19 x 18 mm (20/26)." A "normal" lymph node measures 3-6mm +/- each direction.

They grade the nodes as follows:PI-RADS LEGEND:Overall Assessment Categories (PI-RADS V2):Likelihood that a clinically significant cancer is present based on MRI parameters1. Very low (clinically significant cancer is highly unlikely to be present)2. Low (clinically significant cancer is unlikely to be present)3. Intermediate (the presence of clinically significant cancer is equivocal)4. High (clinically significant cancer is likely to be present)5. Very high (clinically significant cancer is highly likely to be present)

Striving to always be the best, I'm a 5/5.

I’m sure I’ll see the oncologist in the next week or two and we'll sit down and go over all this. But when I saw him a couple months back and when I saw the palliative care physician, they both suggested, in very diplomatic language, that I was perhaps being a bit too hard on myself in terms of feeling like I’m not doing everything I can when I’m fatigued or hurting so bad the day after a bartending gig.  They just said, "keep moving but know you have cells in your groin that demand and will take a lot of your  energy and strength."

This time in 2014 I was officially diagnosed with stage four, Gleason eight, extracapsular, metastatic prostate cancer with mets to the lungs. My lungs were just covered in lesions and they insisted that they needed to do a biopsy to make sure they were dealing with the same kind of cancer. After three biopsies, two weeks in the hospital and two collapsed  lungs, we determined that yes it was indeed the same cancer that was in my prostate. That hospital stay was in March 2014.

By the end of that same year, I had been on but then quit taking Lupron, the hormone deprivation drug, and I had been through six rounds of chemo with docetaxel.
When I quit the Lupron, my oncologist was very alarmed and even had me speak to another oncologist. Chemical castration (and for some men, surgical castration) is the gold standard for dealing with prostate cancer. But I’ve done enough reading and had eight months of my own experience to know that it’s not something I could live with. I was warned by those physicians and numerous others that if I discontinue the Lupron and didn't replace it with some type of hormone blocking drug, I’d be lucky to be alive in two years.

That was five years ago.

So onward through the fog my friends. I keep pushing along, I keep saying a prayer for those that I love that are affected by this fucked up disease.

But I encourage those fighting to listen to physicians, do your research, know that they don't know everything and go with what your gut tells you is right and something you can live with.

And to those who put up with and have stuck with me during this unpleasant journey from all over the planet, thank you.

THANK YOU AND I LOVE EACH OF YOU.