Thursday, September 29, 2016

Next Steps

I began what I regard as the next phase of my treatment today. I took my first four Xtandi capsules this morning. The bottle of large capsules, which I would call "horse pills," arrived last Friday, but I was concerned about a potential side effect which was listed in the literature that came with the bottle. So I set up a consultation with a nurse practitioner in my oncologist's office to discuss my concerns before I started taking them. That appointment was yesterday morning.

To review, Xtandi is a testosterone blocker. It's supposed to help Lupron hold my PSA down, and get my cancer back under control for a while. The side effect that I was concerned about was the possibility of seizures, which is listed very prominently in the brochure. Here is a quote:

Xtandi may cause serious side effects including seizure. If you take Xtandi, you may be at risk of having a seizure. Avoid activities where losing consciousness could seriously harm you or someone else.

Avoid activities where losing consciousness could seriously harm me or someone else? Like driving? As I read that warning on Friday, my wife and I were getting ready to visit friends in Breckenridge, Colorado, which is in the mountains, about 90 minutes away from where we live. Visions of having a seizure while driving on a winding mountain road with my wife in the car started dancing in my head.

This would not do. I called my oncologist's office, and talked with someone who couldn't answer all of my questions. So I made an appointment to go to their offices yesterday and talk with a nurse practitioner. She assured me that I was not at risk for seizures from this medication. It's those who have a history of seizures, or those with brain injuries who are at risk.

That was the second of two medical appointments I had yesterday morning. The first was with a dental hygenist. It took place in the radiation oncology office where I've consulted about radiation treatment twice, and where I met a nutritionist months ago when I was having trouble keeping my weight up. As I've mentioned before, my oncologist wants to put me on a bone-strengthening drug called Xvega. But they need to make sure I'm in good dental health before they start me on it.

It's not surprising that I put off finding a dentist. I hate going to the dentist so much that I'll procrastinate looking for one even when my life depends on it. So the doctors took matters into their own hands. They set up an exam right there in the office, and found a dentist for me. They want me to get a cleaning and take care of any problems that might exist before I start with Xgeva.

The hygenist found a small place where part of a filling is missing, so I know I'll need to get that done. I just hope there isn't any more than that. I made an appointment with the dentist for this coming Tuesday.

When I walked into the office for the dental exam, the receptionist called me by name. She may have had my name in front of her, since I had an appointment at that time, but I've had a friendly relationship with this receptionist for a while, because I've stopped in there a few times in an effort to take some of my ice cream to the nutritionist who helped me gain back the weight I lost. But still, I was surprised to hear her volunteer my name without needing to ask.

My appointment with the nurse practitioner was after this one, in the same medical building, but on a different floor. This is the oncology office I visit most frequently. As soon as I entered and began to sign in, the lady at the front desk simply pulled my chart and started logging me in. She didn't need to ask my name or birth date. Is it a good thing when you're so well known at two cancer treatment centers? On the one hand, yes, it's good to have personal relationships with your medical team. But on the other, I'd much rather be well known at a record label.

The assurances I received from the nurse practitioner regarding side effects from Xtandi was not the only reason I was motivated to start taking it today, without further delay. At the end of our conversation, she asked if I wanted the results from my last blood draw. You may remember that my oncologist wanted a baseline test before I start taking Xtandi, so we know where we're starting.

The two blood draws I had prior to this one showed my PSA rising. The first rise was from 1.42 to 1.97, an increase of five tenths of a point in five months. My next test result, on August 31st, was 2.7; up seven tenths of a point in six weeks. That was what motivated my oncologist to order the bone scan that confirmed my metastasis.

So when the nurse practitioner asked if I wanted to know the result of my blood draw last Friday, of course I said yes. It's 4.77; up more than two full points in four weeks. So I'm taking my pills. I only hope they drive that number back down some, and keep it from continuing to grow at an exponential rate. I really hope that, when I have my next blood draw in about six weeks, I'll have better news for you.

My main motivation to agree to these treatments that I am predisposed to distrust is not simply to save my own skin. I don't believe that's possible at this point. I'm doing these things to try to get a little more time. I'm doing them for my loved ones.

That trip to Breckenridge last weekend that I mentioned above was a long-anticipated trip to visit close friends, and be there for their house warming party. Our friends had moved there a month earlier. Other good friends of ours were there as well, and a couple of new friendships were established. It was a wonderful time. It was soul-nourishing on many levels.

We stayed over Saturday night, and had breakfast at the new home of our dear friends. I suspected that they had not heard my most recent news, so I felt obligated to tell them about my prognosis. I'm afraid I broke someone's heart yet again. Tears were shed.

It's for people like this that I do what I'm doing. I'm not taking these horse pills for me. I'm certainly not going to the dentist for me. Once I'm cleared by the dentist, I won't be getting an injection once a month to strengthen my bones for me. I do these things for my wife. I do them for my family. I do them for the one I made cry on Sunday morning. I do them for the loved one who visited on Monday, and for everyone else who wants to know that I'm not giving up. It may not seem like it to you, but I'm fighting this. But I'm not doing it for me, I'm doing it for you.

These are the next steps in my treatment. There will be more, and I'll tell you about all of them. Sometimes, to me, these things seem like trying to hold back the tide. The tide will come in, no matter how much I try to hold it back. But I want to spend as much time on the beach with you as I can before that happens. #waroncancer


  1. Toes in the sand and a drink in our hand my friend

  2. I am not a fan of going to the dentist either...thanks for your post....I am hugging you and Sharon..