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One More Show?

February 29, 2020  by RJMS  •  What's Next?

February 26th, 2020

I had a biopsy done a few days ago, and I am waiting for the results. I was in the kitchen just now making a big pot of vegetable/bean soup. The thought came to me that if they do find cancer I could think of it as the last show I have to produce.

The reason for thinking of it as a show is simply it will have many actors/performers/technicians I will need to involve, and the logistics of the fact that I currently live in Costa Rica. But mostly, like all shows, it will need to be funded. The source of those funds could be the most challenging aspect, again, similar to the process of event production, which is what I did for a living.

As we all know health care in the United States can be daunting to deal with. As I live in Costa Rica there will travel and other international issues to deal with too.

February 29th, 2020

I received a call from the biopsy doctor here in Costa Rica yesterday morning at 9:30, just as I was about to get on my bike to ride to town for a dental appointment. I swear, sometimes I wonder how the universe works. I have been waiting for 5 days to hear the results and all that time I have been home doing nothing. So the call comes just as I am about to leave for the one thing I needed to do this week? Sheesh.

Anyways, I do have prostate cancer and it is advanced. Not the worst version, but second to worst. I will begin production planning. Stay tuned.

Oh, and as the Guide suggests, “Don’t Panic”. The 5 and 10-year survival rate for prostate cancer is pretty high.

March 4, 2020

Next up: Head to Denver. The doctors here in Costa Rica recommend surgery, that is, removal of the prostate. There are other options, many according to my friend Michael, who has been diagnosed and treated for almost 7 years now, and my own internet research. Surgery is often the first thing suggested, probably because so many have been done, on so many, by so many, it remains the default. I have to admit, as someone who has always preferred the quick solutions to problems my first reaction is to think “yes’. Tear it out, get it gone, so I can get on with this business of taking it easy at the beach.

However, at the University of Colorado Urology Clinic at the Anschutz Campus in Aurora, where I have an appointment on March 13th (a Friday), that reaction may change once the team up there has a chance to review my tests.

March 8, 2020

Yesterday I spent several hours reading more reports from the Mayo Clinic and other sources. I am beginning to not like the sound of the surgery option. In my dreams I will fix it all on my own, like the folks in the movies do: I watched “Heal”, by Kelly Noonan Gores, on Netflix last night.

March 10, 2020 7am

The coronavirus situation in the U.S. escalated over the weekend and is very much in the early stages of contagion in the states. I spent yesterday sending messages and calling the Urology clinic for advice about whether I could wait to come up and see them, given they have a copy of my recent biopsy as well as all my other recent records. They did not respond by the end of the day, and I needed to either cancel my travel arrangements or pack my bags to begin travel today, March 10. I have chosen to stay in Costa Rica for the time being.

I feel fine, my main symptoms come and go, some days I am normal some not. My urologist here, when asked how long I had before needing to do anything said “6 months”. I was not so concerned about getting the virus myself, I am pretty healthy in every other way. I was mostly concerned about bringing it to my friends’ home, where I would be staying. They have a household of 6 people including their sons, ages 7, 5, and 3, and T’s father, age 72. Also, I would be going to a big hospital complex with hundreds of patients. So rather than risk the plane rides and airports etc. where the virus is likely present I decided to stay here. I am isolated and can control where I go and what I do to a very large degree. And I am expecting there will be a lot more information and possibly some resolution to the crisis before I really need to be seen in the States.

April 5, 2020

On January 14th, by prior planning, I began the plant-based diet as recommended by Dr. Greger in his book “How Not To Die”. I had been taking atorvastatin to lower cholesterol but have now ceased to as my last 3 lipid panels have seen levels well below those that would be of concern. Also, my weight is done to 175, (it has been a consistent 212 or higher since at least 2012), a result of 2 short water fasts last summer followed by some dietary changes that allowed me to keep it off. My BP, pulse, kidney function, and EKG are all normal. Since beginning the diet I have also been able to stop taking the PPI drug I had been on since the year 2000, when I was told, as I woke up from my first ever colonoscopy, I would be on for the rest of my life. Turns out that all I needed to do was stop eating so much butter and cheese. I still eat both of those in small doses when I feel like it, so I am not totally “plant” based as yet, but that change for me is profound. I am now free of any ongoing prescription drug use.

Like many, I have been aware that there are some foods one should avoid but also like many never felt the need to not eat some of the more normal things that the U.S. Govt. says are ok, like cheese and eggs. Turns out they are the worst offenders when it comes to encouraging prostate cancer, and I always ate a lot of both. No more.

No doubt related to all of this for some months now I have had various health issues with no clear source. For a few weeks in Feb.-March I had headaches which for my entire life were rare to me. They have now ceased. Since last summer I had a strange ongoing pain in my left leg. Strange in that is was unlike either a nerve or a muscle pain, more like a sore point on my lower thigh, sometimes in my calf. As it was ongoing it is what eventually made me go to see the doctor. It was on that visit that he asked me about some other things that led to him questioning me about my prostate issues.

That pain is now gone as well. I was also getting nighttime cramps in both legs something I had not experienced for maybe 15 years. Also some occasional dizziness, which has been intense at times. It is all rather boring. I suspect the left leg issue and the cramps in both legs might have been related to the statins. The nighttime cramps in both legs are rare now too, and I find, if I am mostly awake I can even control them. Last night I was feeling one coming on and I just said “no”, and it never fully engaged.

But the most inconvenient thing began about 4 weeks ago. I came down with a bad staph infection, my first ever, and so I did not know what it was at first. It manifested initially as a bad sciatic nerve issue, which I have not had in many years. I had learned how to do exercises to prevent it. About a week later the rash showed up. I went to the doctor and got an IV full of antibiotics and a week’s worth of pills, which knocked it down. But it has taken until now for it to heal, and it may still be in my right side sciatic nerve as I woke up today with similar pain in that area, though the rashes are gone.

I have been in touch with a man who along with his wife, consults with people on things one can do to fight cancer and other major diseases with adjustments to one’s diet. He himself had prostate cancer and was able to put it into remission, though his was less advanced then mine is. I have decided to engage them and they will be giving me dietary and herbal supplement guidance for the next few months in an effort to at best, to shrink the tumors, or at least limiting their growth. As I cannot leave Costa Rica for a month, likely two, I say why not?

This coming week I will return to see Julie Bray, a Licensed Professional Counselor from Texas who lives here now. She owns a retreat facility located on the beach and utilizes various therapies, and is herself a cancer survivor. I have been to 2 sessions with her, and she will be assisting me with addressing the mental side of things.

April 29, 2020

Southwest Airlines will not begin flights again until June 28th. I am now looking at making a trip to the U.S. in mid-July or August.

My PC seems to be under control for now, but I still want to come to Denver to talk to the docs there and get some more in-depth advice on what’s next.  

Did I mention I had a really bad staph infection pop up about 8 weeks ago? Right after the dentist pulled the root of the capped tooth I knocked out by falling off my bike and doing a face plant back in February?

I figure the wound from the tooth extraction caused the staph. It manifested at first as serious pain in my right hip and knee and eventually a rash all over my right leg and buttock. Dr. Freddy Soto, our local doctor, put me on an IV antibiotic as soon as he saw the rash. Then 7 days of twice a day pills knocked it down, but it took 3 more weeks for it to go completely away.

I have been on my new diet since January 14th. So at 3 1/2 months doing plant based, with a few supplements like 6g of turmeric daily, and raw ginger and raw garlic. And I stopped drinking a beer or glass of wine with dinner too. I have strayed a couple of times; pork for dinner once, wine with the chicken quesadilla last night, and feel no guilt or cravings. It is not like quitting smoking folks (although that was easy for me too, almost 16 years ago now).

I feel better overall than I have in quite some time. Most of my low-level aches and pains due to minor inflammations of various kinds are gone, as are the headaches I was having for a while last fall. Also the leg muscle issues that I suspect were caused by the statin I took for about a year are gone. My BP is now consistently at 105/55 with a resting pulse of high 50’s, and I am down to 170 lbs., down from 212 last summer. And I have been maintaining that for 3 weeks now, so long term maintenance should be easy.

I took a BP reading the other day immediately after exercising and it was only 124/60 with a pulse of 78. It used to come in at the 150/80 range and 115 bpm at the end of my routine. Also my lung capacity seems to have increased, I breathe less hard during exercise, and can hold my breath underwater for much longer than I used to be able to. My SpO2 reading hovers around 95, but often is higher. It used to be 92. I was bummed for a while about how much work it seemed to be to stay healthy. Now I am glad I stuck it out, it seems to be almost no work at all to eat right and do a bit of exercise every day. 

The best news is they are allowing us to use the swimming pool again! They had made it off-limits at the start of the COVID-19 crisis, as part of the effort to curtail gatherings of unrelated persons). We expect they will open the beaches again by the end of May, as the number of new cases continues to be very small (like 5-8 per day).

June 23, 2020

Today was a turning point again. Lost and found: turmeric. beach days. yoga. massage. Kirby/Dot gone. Covid-19.

November 1, 2020

And now it gets serious.

I got on a plane and flew to Denver on October 1st to seek treatment for my cancer. The move was precipitated by a urinary infection that emerged on September 19. I woke up on that morning unable to pee. It was a Saturday. By the afternoon it was obvious it was not going to resolve and I called the local doctor on his cell and office phones. By Sunday evening I had not heard from him. I was in serious pain and discomfort and about at wits end when he finally called a little after 10pm. Turns out he does not normally look at messages on that phone number, and like many Costa Ricans he uses WhatsApp instead, and I had used normal text messaging. He lives 20 minutes from town. He met me at his office at 11:45 pm Sunday, about 36 hours since my last pee. He inserted a catheter and was able to drain almost 2 liters.

He left it in and my latest chapter was underway. I returned to his office the next morning and he administered an IV of antibiotic and inflammatory drugs, and gave me prescriptions for the full 7 day treatment. 2 days later we removed the catheter, but no joy, so we put it back in. The next day I made the decision to return to the states and booked my flight.

I arranged a 2 week stay at a hotel near the Anschutz Campus in Denver and made my appointments. By the 13th of October we had images and it is not good. The cancer has grown and is too big to safely either remove it or irradiate it. I began testosterone lowering therapy on October 27th, it will last 3 months and is intended to shrink the tumor to a size where it is safe to work on. A blood draw on November 30th will tell us if any progress on the lowering of my testosterone level and/or PSA (a cancer marker) is happening. If it is, the next scans will be done at the end of January. It may be desirable to do another 3 months, or if it has shrunk enough I will decide which procedure to choose at that time.

There is an option for a newer less destructive form of radiation therapy that is only done in a few places, Nashville being one. Surgery is a one or two day in-patient procedure with a minimum 2 week recovery. Radiation is 5 days a week, out-patient, for 4-5 weeks.

At present, 18 days in, I am feeling the effects of the therapy and they are very mild, mostly just some fatigue and occasionally some minor muscle and nerve pain. I continue to eat my mostly vegan diet and to do my exercise routine several times a week, and to ride my new bicycle when the weather is warm enough. I do miss the warmth of Samara a lot, both the sun and the people I became close to.

I purchased a used car and I am staying with Chris and Theresa and their 3 sons in Lafayette. On December 1st I will drive to Nashville to stay with my good friend Randy and his family for Christmas. Come January 1st I may decide to travel to Florida, my current state of legal residence in the U.S., to start a search for a home to rent or possibly purchase, as I will wish to have a place of my own that I can return to after treatment.


November 14, 2020

My long ago lost and recently found good friend Michael Douglas Scott made the transition to the unknown place on November 7. I spoke to him just prior to his entering hospice care at his home in La Veta, CO., to again thank him for his friendship and esp. his kinship these last 12 months, advising me while he himself dealt with the same cancer, diagnosed some 7 years ago. I am continuing the work of turning his blog post into a printed book. He and I began work on it back in May and I hope to finish it by early next year. Until it is done his words can be found here:

https://acehotel.blog/2018/09/17/in-my-younger-days/

November 30, 2020

Today, a Monday, I had a follow up visit with my oncologist. A blood draw was performed with the goal of ascertaining if the hormone therapy begun on October 15 was having any effect. My sense was it was, as my symptoms were markedly improved.

The results were over the top positive. Regarding the testosterone, as we waited for the results to appear on her computer screen she indicated she expected a level of 150-200, down from the baseline reading of 563. Today’s result was 15. She was flabbergasted, as was I, and declared that I was officially “castrated” (chemically, and reversible once treatment ceases).

But it was the next one that floored me truly. My PSA, the marker for how much cancer is in my prostrate, was down to 6.6, from a high of 50. A level of 5 is cause for concern in a monitoring situation, and less than 4 is what is considered no immediate danger. So yes, so far so good. The treatment continues for 7 more weeks, in mid-January we will recheck the levels.

The memorial service for Michael, via zoom, was Sunday, the day prior to this report. I told a few stories, and like others on the call, I cried. He was a rare man, one who truly cared about and indeed loved, every friend.

Have a nice Christmas, and stay safe.

December 25, 2020

Christmas Day update. It snowed a trace, just enough to make it white. Noah, 7 years old, was up at 5am ready to open presents, which we did for several hours. The last time I had such a Christmas Day was 8 years ago, before I began this long odyssey of travel back in 2013. It was swell, and I now own the worlds brightest ever flashlight as well as some new gloves. Noah has a Fender electric guitar, a baseball bat and a magic kit, among other things. Tina received a pair of the new airpod pros, and Randy has a new USB turntable and a Johnny Cash greatest hits album to play on it.

A few days ago I went to a private clinic in Franklin, Tennessee, a cancer radiation treatment facility where the primary doctor has extensive experience with prostrate cancer. The meetings lasted for two hours. Two days later and I made the decision to begin treatment with them beginning in January. There will be one week of pre-treatment activities followed by 5-8 weeks of 5-day a week one-hour sessions of proton beam radiation. The prognosis is good for them being able to get it all and thus provide me a “cure”. There is evidence that I will have a better chance of less damage to nearby healthy tissue with this “pencil beam” radiation than what might happen with the standard x-ray-type or with surgery. I will need to continue to have hormone treatment for up to 2 years as insurance against a recurrence.

Randy┬┤s partner Tina has graciously offered me a place to stay during treatment. Her home is a 15 minute drive from the clinic, of which there are only a few scattered around the country that utilize this protocol. So I feel I am blessed once again with circumstances that will enable me to hang out on this weary planet for a while longer. I am not sure just what I will do with the time left to me as yet, but I have some ideas for mixing it up a bit going forward. Again, stay tuned.

Joy to the world.

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