Saturday, January 6, 2018

My Status As We Enter 2018

It’s been awhile since I posted and, as we enter 2018, it’s time for an update.

As a reminder for those who have forgotten or are new to the blog, in March 2014 I was diagnosed with Stage IV, advanced, agressive, metastatic prostate cancer. It registered a Gleason 8 (Gleason measures the aggressiveness and degree of mutation of prostate cells and ranges from 1 to 10 with 10 being the worst). After meeting with oncologists in Austin and at MD Anderson in Houston, the agreement was that if I did nothing my longevity would amount to about a year. Not being ready to die at a very healthy, fit 53, I bit the bullet and followed doctor's advice.

I went through 6 rounds of high dosage docetaxel, a very potent, very toxic chemo drug.  I also went through 8 months of hormone deprivation where I had no testosterone.  The two knocked the disease down to where I didnt have lung lesions and the tumor had been driven back into the gland.


But the treatment left me with severe peripheral neuropathy. That is my major disabling
symptom these days.

Flash forward and, after almost 4 years since diagnosis and almost 3 since treatment ended, I now live in the East Bay area of San Francisco since June of this year courtesy of very generous, loving friends of 30 years.  

Here’s where I stand:
  • No evidence of cancer other than the still living tumor in the gland.
  • Relatively significant increase in energy; I do something physical (i.e. walking me, walking the dogs, the gym, heavy household chores) 9 days out of 10. 
  • Slight decrease in peripheral neuropathy pain.  This has allowed my to take less pain medication and also allows me to work on my feet for up to 7 hours as long as I have at least a day off in between catering/bartending gigs.
  • Only negative indicator is the almost full point rise in my PSA since I’ve been here (just over 3 ng/ml) which, given my diagnosis and history, is quite likely indicative or an active tumor.

Now, all that said, my physicians, both the oncologist and the primary care guy, are confounded as they feel that the “normal” course of treatment in the case of advanced, metastatic, aggressive prostate cancer is the chemo and then a lifelong course of hormone deprivation (i.e. no testosterone).  

As I chose to forego all that at the end of 2014 and I’ve not been following the usual course of treatment since then.  They disagree with this and feel I should be on it…...but they are amazed that I’m doing so well considering. So amazed that the oncologist said, “Whatever you are doing, keep on doing it.”



So what am I doing?  


  • I take CBD oil twice daily under the tongue (approximately 40 mg) and I also consume THC and high CBD cannabis in varying amounts at least once a day via inhalation as well as oral routes.
  • I exercise daily in some shape, form or fashion.
  • I get massage regularly.
  • My stress level has decreased substantially in the last 6 months.  Far less financial stress and fear of living homeless.
  • I’m trying to eat a very nutrient rich diet.  I look at the label on everything and make sure it is vitamin, mineral, protein, amino acid rich.
That’s it folks!  I have another PSA test by the end of January and we’ll see where things are headed. If it’s up substantially, I’ll need to reevaluate things.  If not, we’ll stay the course…...despite what the Western docs say.



The bottom line is this.  My advanced, aggressive, metastatic cancer is back in its cubby hole
for the time being and, while it is, I will be doing all I can to continue to work through the pain caused by chemo and I will enjoy life.



One day at a time.

Tuesday, September 5, 2017

Checkin and Status from East Bay

As I approach three months in the East Bay area of San Francisco, some updates:


  • My last CT scans show no visible sign of cancerous cells in my torso although digital exam still indicates a mass or tumor in the upper right quadrant of the gland.  CT doesn’t penetrate the prostate gland adequately and only MRI and, more so, biopsy will show PC in the gland..
  • My new oncologist reminds me there “is no cure” for what I have.
  • I take high CBD oil with a similar amount of THC twice to three times daily under my tongue.  It’s delivered legally to my door by a very nice delivery guy.  The cost is a fraction of what I paid a year ago to get it shipped to Austin.
  • My PSA has jumped to over 3 ng/ml, up by almost a point. Indicative of a gland/tumor swelling
  • Neuropathy has eased but my feet and hands still ache 24/7 and legs and arms to a lesser extent.  Now is my time to focus on healing this damage so I’m reevaluating diet and I get daily exercise and sun.


In summary, the move to the Bay Area has been great in terms of accessing CBD/THC oil without fearing legal consequences.  The temperatures here (most days) allow me to get out and do something every day.  Cancer is still present in my body but relatively stable.


But today, right now, I am better than I’ve been at any time since diagnosis and treatment.  

And for this, I am grateful.

Sunday, July 2, 2017

A New Home and Easy, LEGAL CBD Oil

17 days ago, I made a major change in my life with a move to the East Bay area of San Francisco. This was at the invitation of two friends of over 30 years who had made the offer for me to move in with them some months back. But I had only begun to feel relatively well enough in the last 3 months that I decided to take them up on the extraordinarily generous offer.  I’ve known this couple since I met and roomed with them in Corpus Christi in the mid 1980s.  So I made the move on June 17th.

Of the many positives this allows me, chief among them is the easy, LEGAL access to medical cannabis and cannabis oil.  I’ve long ago decided that THE best treatment for my prostate cancer with the fewest side effects was CBD oil.  In Texas, it took a great deal of effort to acquire, having to have it shipped from out of state while committing a felony.  In California, it’s legal and all it requires is texting the guy from the dispensary to deliver.  Then he shows up at your door.


It’s that different.

Thursday, April 6, 2017

My Status


It took me a couple of weeks to feel like writing, but here’s where things stand.  After my last visit to my PCP, exam and discussion of PSA results, here’s what he has to say:


“ I am the Primary Care Physician for Scott L. Miller.  I am on staff at Austin Regional Clinic where Mr. Miller has been a patient for the last decade.


Mr. Miller was diagnosed with a very advanced, aggressive, Stage IV prostate cancer with metastasis to his lungs in late 2013.  The tumor was outside the gland (also known as extracapsular) and involved with his seminal vesicles. His PSA ( a marker used in evaluating potential prostate cancer or the disease itself) was tested with a result of 4.91 ng/ml.  Although he didn't realize it, he was a very sick man. He then underwent both hormone deprivation therapy as well as chemotherapy with the very toxic agent, docetaxel in 2014.  The therapies were effective at reducing the metastases, the size of the tumor and his PSA level, reducing the level to less than 1 ng/ml in April 2015.


Since that date, Mr. Miller’s PSA has risen consistently to a 1.23 ng/ml in April 2016 and now to a 2.24 reading as of last month.  Digital exam indicates a mass/tumor on the upper right quadrant of the gland.


Given his history of metastatic disease, the rapid trajectory of his PSA rise likely indicates a return of the aggressive tumor and the progression of the disease.


Mr. Miller continues to suffer from extreme neuropathic pain in his feet, hands, arms and legs likely induced by the chemotherapy treatment and consults with Dr. XXXXX for pain management.”


My physician is clear on what I’ve know since all this started.  I’m fighting a losing battle.  At the rate of progression of the PSA level (about 1 ng/ml/year), I'll be back at the level when diagnosed at the end of 2013 in roughly a little over 2 years.  WIll the tumor once again be outside the gland?  WIll it have metastasized to lungs or other organs?  Who knows?  But based on previous experience and physician statements, I think I know the answer.


Painful neuropathy has returned after my CBD experiment.  While I try to do a food demo every weekend, even that proves challenging.  So that leaves me to survive on by meager SSDI allwoment.  Have you ever tried to pay rent, insurance, buy food, pay exorbitant prices for meds and keep a 26 year old car running on less than $1500/mo?  It’s not easy and I fall short monthly. (if you can help, please see the fundraiser here. )


The only treatment option is to go back on hormone deprivation therapy,  which I refuse to do.  The side effects were simply too extreme or do nothing and remain on palliative care.


I spend many lonely days at the absolute edge of Cedar Park in my run down, basic, garage apartment.  The internet, old movies and sleeping for as many hours as I can have become my friends.


Chemo brain continues to plague my memory and recall.  As much as the neuropathic pain, that is extremely frustrating.  To write a clear sentence and certainly something like this blog, is a huge effort and requires multiple rereads.


So what advice can I give a person dealing with a disease that will kill them?  Value your healthy, fun days like they were platinum; they are more precious than you may realize and are not endless.  Enjoy children when you are sick as they will make you laugh and help see the continuity of life. Get out when energy and pain level allow; this will make you feel connected.  No matter how you feel, be kind to those around you, especially caregivers;  They're trying to help. Share your life wisdom;  you know more than many.  Have a nice, soft, terry cloth robe as it will provide much comfort.  Forgive those who have wronged you and focus on their good points.

Above all, accept reality and try very hard to make peace with it.

Sunday, March 19, 2017

Rough Week with News of the Kind We’d Rather Not Have

The last week and a half have brought with them the news which seems to be de requir these days.


Blood test numbers trending in the wrong direction, finances that make it difficult to finish getting the 26 year old car finally finished into a safe condition.  Oncologists that don't call back (funny how it works like that when you go from Cadillac insurance to Medicare) and increased pain levels that make the use of a cane once again a necessity.


I’ll write more in the next day or so with more detail and factual info.


In the meantime, please send a prayer or two my way.


Much love,

Scott

Monday, February 13, 2017

Pain Management - Recommendation in Austin.





Between perineal pain and the wretched limb neuropathy as a result of chemo (decetaxel to be specif),  I've been taking heavy duty pain killers for almost 3 years now.  My initial PM guy moved out of state and then I had to go through 4 PM clinics, 2 of which were pill mills and one of which wrote an incorrect RX then wanted to blame everyone but the DR. that signed the incorrect RX.

So, courtesy of my nephew, I was referred to Dr. Geremy Sanders of Texas Interventional Pain Specialist on 35th st here in Austin.  His is  SOLO practice and I ALWAYS see him, not an assistant.  He is warm, kind, asks good questions as to how I'm doing, utilizes DNA testing to make sure my meds are the best fit for me.

I am so grateful for this professional as he has given me so much o my functionality back.  When my pain is down to a manageable level, I can do normal things.....laundry....grocery shop.......see movie with friends....and on and on.  Without it, I'm in a fetal position in the bed or on the couch wishing that death would relieve the pain.

So regardless of where you live, if cancer or chemo side effects are leaving you with little to no ability to function, find a good pain management doc. It may take some looking because there are too many far more concerned with just getting your $$.  Look for a small practice with good Yelp, etc reviews and referrals from people you trust.

There is no need to suffer.

Here is a link to Dr. Sanders site: Click here for Dr. Sanders

Monday, January 30, 2017

Suicide - Not An Easy Topic, But an Important One

On a prostate cancer support group that I've been a member of for some time (https://www.inspire.com/)
I got a response to one of my posts where the gentleman raised the issue of suicide:

"Given this discussion, I'm going to post something on a topic that I've never seen here, realizing that it may not be welcome: suicide. I'm 61, had a G9, RP, repair operation, RT, and ADT. The ADT has largely worn off, but as I result of all this I'm completely unable to engage in sex; I have extensive nerve damage to my entire genital region. 

My med onc says I have a high probability of a recurrence, with will mean a life sentence of ADT, but my experience with it is that it's torture. (Just seeing a pretty girl with her boyfriend is a form of torture as well.) Now, I'm sure cancer in one's bones is far worse. Having said this, if/when I have a recurrence, I *may* deny the ADT, take my chances, and, if it goes the wrong way, blow my brains out. I don't think I'd be the first. "

I replied:

Suicide isnt an easy topic but an important one to discuss as one moves from trying to stay alive by "any means necessary" to accepting that sometimes one just has to accept that we all die from something, sometimes much sooner than we wish to.

I've considered this and fortunately, I have a dear friend who lives in Seattle and we've already agreed that when the time comes, if I choose to do so, I'll take up Washington state residence and take advantage of their physician assisted suicide (going to sleep with a Marilyn Monroe cocktail of barbiturates seems preferable to gun violence to me;) ) laws. I don't plan to wither away and die a slow, painful, bone cancer death.

Thanks for addressing the topic and best wishes to you.

Scott

Comments From Those That Have Given

I've been really touched by the outpouring of help I've received from friends as well as people I don't know.

Some of their comments:

My Husband suffers from Prostate Cancer Stage III Gleason 9 is back from year of PSA 0.2 know we have a long road ahead. God Bless you.

Scott I saw your story on my sister's page. Praying God's Continual Strength, Comfort, Love, Healing and Support surround you and shower you with blessings beyond measure.

Good luck buddy...I got ya back!

Hi Scott! Sorry I'm late to the 'let's fix up meatloaf' party! Miss you! XO 

Not much but I hope it helps.

I love you.

Love you so much brother, many people do in fact.

What type of job did spider man apply to? Web developer :) hope this helps (from a friend who ALWAYS has a joke ready...lol)

Dear Scott, I hope this helps a little. 

Love you uncle Scott!

Here's hoping you can get that clunker fixed!!!

To say I'm touched by these and the help is an understatement.