Amelia Island

We took our first Gilded Age trip recently and went to Amelia Island, which is about 45 minutes north of Jacksonville, Florida. We stayed at the Ritz Carlton.

Upon arrival, we were warmly greeted by the valets and shown our way to the reservation counter. The staff were exceptionally friendly, and we were checked in quickly.

The room was unremarkable, but the view of the Atlantic was fantastic.

This shot doesn’t come close to doing it justice.

We settled in for some cocktails at the concierge bar, along with some snacks. A couple drinks later we decided to go back to our room and order room service. The food was absolutely restaurant quality and we really enjoyed it.

We spent the next day relaxing and had a light lunch from the concierge table. For dinner we went to David’s, a highly recommended local restaurant. Our meal was fantastic.

There were some hiccups. The first night I had terrible back problems getting to sleep. We asked for a room with a firmer mattress. They explained that there was a pillow topper that they’d remove and we could stay in our room. That did the trick.

We had hoped to stay one more day to try the hotel’s restaurant, Salt, but when we woke up the fringes of the hurricane had moved in, and the weather was terrible. We decided to call it quits and head home.

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Gilded Age Travels

To try to give me something to look forward to I dreamed up the idea of gilded age travels. The idea is pretty simple, tour the southeast region by going from nice hotel to nice hotel and eat good food. I think we’ll start our first trip to Orlando within a couple week. Charleston, Tampa, Miami, Ft Lauderdale, Amelia Island are part of the list so far.

I need something to focus on aside from this cancer and hopefully this will do the trick.

Ketamine

As I discussed in the post before the last post, ketamine was one of the paths that I was planning to explore for depression control. I found a clinic that specializes in it and signed up. I discussed the matter with my psychiatrist who was very enthusiastic and gave me a taper down schedule to get off all my psychotropics. I was so pumped.

The program was three sessions, one day apart, each lasting about an hour. I’ve never done drugs, but this made up for it, I could feel and see sounds. Altogether it was a very pleasant experience.

At the end of the first session I felt quite good and was very encouraged. The next two days were a let down. The sessions were fine, but afterwards the depression returned.

In the end the experiment was a failure. I was crushed. I still have to go back to the psychiatrist to see if there are any new drugs.

I haven’t been doing too bad on my own. At the peak of my depression I was taking 6 mg of Xanax a day. I’m now down to one or two, sometimes zero.

No Chance for the Gold Ring

The immunotherapy option, Keytruda, had me all excited. Even if the odds were very low that it would score. Unfortunately, one of the preconditions for trying the therapy is that one’s prostate cancer has certain mutations. That’s where the rub comes in.

The most common way to check for the mutations is to sample the biopsy material from way back when the biopsy was performed. Regrettably, M D Anderson lost my biopsy samples.

Second is to capture some of the tumor cells floating in the bloodstream. It appears I have very few as our attempt at this was a total failure.

Third is to sample a soft tumor where the cancer has spread. The good news/bad news for me is my cancer has not spread into any soft tissues.

Fourth isn’t really an option at all. There are prostate cancer cells in my bones, but they’re calcified as I understand it. The process of decalcifying them destroys the ability to detect the mutations.

In sum I’m screwed. Until I have the cancer spread into the soft tissue and get a hit, or I pay for the treatments out of pocket Keytruda is not for me.

Immunotherapy could stop prostate cancer spreading, trial shows

Immunotherapy could stop prostate cancer spreading, trial shows

https://top10events.wordpress.com/2018/06/03/immunotherapy-could-stop-prostate-cancer-spreading-trial-shows/
— Read on top10events.wordpress.com/2018/06/03/immunotherapy-could-stop-prostate-cancer-spreading-trial-shows/

Not What I Expected

I wasn’t sure how things would play out after I got my 1-2 year prognosis. At the very beginning I was in disbelief, a little shell shocked, but this wasn’t a total surprise. My PSA was starting to rise suggesting the Xtandi was beginning to fail and from research I’d done 1-2 years seemed about right.

Once that initial disbelief passed, I was ready to go. I decided this was going to be one helluva last 1-2 years. I started thinking about what would be first.

Then a new morning came. I woke up sobbing and in a full blown panic attack. Fortunately, I had some Xanax on hand and got control of the situation. A few hours later, as the Xanax wore off, the panic returned and I had to take more Xanax. This repeated again at bedtime.

And it continues to repeat to this day. Every morning I wake up crying, take Xanax, feel like a zombie, wait until it starts to wear off and the panic returns and take some more. Repeat one more time.

I have lost all interest in doing anything. I don’t want to get dressed or go out. I have to force myself to brush my teeth and shave. All I want is for God to come and take me. Don’t get me wrong, I’m not suicidal, I just feel God should be willing to end this torture.

My wife and I set up several dinner engagements over the past couple weeks. I didn’t make any of them.

I know this can’t go on indefinitely, so I’m pursuing three paths. First, meeting with a psychologist. Second, meeting with a psychiatrist. Third, trying to get a ketamine infusion. Ketamine has proven to be very effective at lifting most people out of depression. It works very quickly. There’s a clinic that administers it about 5 hours away from where we are. How it plays with panic attacks is an unknown at this point. I have to do something. This is worse than no life at all.

Treat the Patient, Not the Number

At my last meeting with the oncologist there were a couple topics that came up that I thought would be of interest to folks with prostate cancer. We spend much of our time obsessing over PSA, but it has to be tempered.

On chemotherapy and PSA. Chemotherapy will reduce PSA, but that reduction doesn’t carry over to much improvement in survivability. The median extension in life for chemotherapy is around 2.5 months.

On Provenge and Xofigo treatments. Both produce a median extension of life of about 3 months and have minimal side effects. However, both can produce an increase in PSA.

While PSA is very important, it’s not the last word. It’s possible to get too caught up in treating the number.