Met with my primary care physician to go over my latest PSA result. It came in at 1.7. Now that’s what I’m talking about, a great number. The doc laments that we’ll be spinning up once every six months prior to the PSA test, but it has to be this way. I don’t much care right now, I’m too happy.
Got my latest PSA result back. It jumped to 4.2. I’m a little scared, that’s a pretty big jump it seems to me. Time for a phone consult with the Jacksonville urologist.
Over several emails the last few days, the Jacksonville urologist explained that they do see bumps like this where everything is OK, but they’re not that frequent.
We connect today via phone and decide that to be safe I should get a bone and CT scan.
Went in for the bone scan and CT scan. Nothing much of note except that in bone scans the technicians don’t need to leave the room. In my case after they started the test, they moved a few feet away and just started chatting away. I was really surprised at my reaction. I thought, “Here I am, fearing for my life, and you won’t either pay attention to me or go to another room and chat.” I felt like a piece of meat on a slicing table. When it was all over, I wasn’t sure enough of my feelings or myself to say anything. I still don’t know if I should have said anything.
Found out today that it’s back. Two spots on my spine. No question now that the cancer penetrated the capsule and is in my bloodstream. The clock is now ticking. This is the death sentence I’ve been dreading. Time to shift to an oncologist for the death march. How much longer will I be able to live normally? How soon will I be on chemo and how much pain am I going to have to endure? What if the pain is too much?
Most of the day I’m in shock and disbelief.
My wife and I have talked about moving to Jacksonville where her family is. I think we need to really accelerate this.
Today when I first go outside, I notice things I normally don’t. The crispness of the morning. The wind cooling my face. The leaves in the trees rustling. I feel really alive. I suddenly realize and say to myself, “this is all going away before long.” Then the day turns into depression.
I email my primary care physician telling him I think I should go off my cholesterol and high blood pressure meds to save money. He tells me he doesn’t want me to have a stroke and then be a cabbage. I decide to stay on the meds.
Flew to NY today, starting a trip we booked before the new diagnosis. It will include a few days in NY, a transatlantic cruise, and a stay in London. Nothing was refundable, so we decided to go and make the best of it.
Finished our trip. As trips go, it wasn’t that memorable. Depression was a constant problem, but we did manage to have fun. I was probably up and functional about 5 hours a day. Usually I take hundreds or even thousands of photos on a trip. Only took a few dozen. On balance I’m still glad we went. What little diversion it provided was appreciated.
My wife and I meet the new oncologist for the first time. Seems like a good guy. We decide I need to start hormone therapy to remove the food source, testosterone, from the cancer. Because of my experience with Lupron in my first treatment for the cancer, I’m switching to Casodex. If there’s a serious problem with depression I can stop taking Casodex. That option isn’t available with a Lupron shot, which lasts a minimum of one month.
I ask about irradiating the two spots, and he says the standard of care is to not irradiate until there’s pain, which I don’t have. In the back of my mind it seems common sense to get rid of this by any means rather than let it stay and grow. He assures me there are no studies that prove treating it prior to pain makes any difference.
I email my Jacksonville urologist the bone and CT scan readouts. He strongly recommends a course of radiation on the spots. He makes it clear this is considered aggressive therapy and is just his opinion.
Late this evening I fall apart. The last thing I want is differing recommendations. To irradiate or not, it’s more than I can handle. Once again I’m in a situation where the docs don’t agree. I come apart at the seams; depression and panic reign. I have to find a better antidepressant cocktail. Eventually, I calm down and get some sleep.
Attended the christening of the daughter of a close friend, who’s basically family. They asked me to be the godfather. I accepted, but it was under duress. It seems so unlikely she’ll ever get to know me.
It is truly a wonderful thing to be asked to be a god parent, but I think she would be better served with someone else.
In a back and forth email exchange with my primary care physician, he votes for irradiating, but makes it clear this isn’t the standard or care and it isn’t obvious what to do. My “young” age plays a key role in his recommendation.
I’m more OK with the fact there’s disagreement among the docs. I have to own my death. It’s not for someone else to decide. I’m starting to lean towards irradiating.
I start on a new antidepressant cocktail as prescribed by my primary care physician. Sure hope this can help me get control of this ever present depression.
The new anti-depressant cocktail seems a miracle. Hope it stays that way. Yesterday was the first day I had no significant depressive symptoms. That stuff they say about it takes weeks to feel the difference for anti-depression drugs has never held true for me. I have always been able to tell if an antidepressant was working in less than a week. It has been my experience, though, that the full effect takes weeks.
My wife and I met with my oncologist today. My PSA has declined to 6.3. Since the depression appears under control, we tentatively decide to switch to Lupron on Jan 3, 2012
We discuss irradiating the spots again. The issue, as I understand it, is there are no studies that have shown treating the cancer pre-pain provides any benefit. The downside of treating include side effects of the radiation (typically limited to fatigue) and a greatly limited ability to retreat the area. On the re-treatment front, though, it is rare that the cancer reappears in the same area again. The upside of treatment is it would hopefully greatly reduce or eliminate the cancer on the bone and with it the prospect of it re-metastasizing. It sounds to me like this mostly about cost and the time to do the fifteen treatments. The downsides don’t sound that big. I think it’s a good idea. The doc doesn’t, so he refers me to a radiologist to get another opinion.
I ask what my prognosis is depending on how aggressive the cancer is. He really, really doesn’t want to answer the question, but I eventually get from 1-5 years. If my cancer happens to respond particularly well to treatment, then it’s possible it could be much longer.
He recommends a psychologist who specializes in medically challenging patients, such as those with terminal illnesses. Sounds like a good idea to me after hearing I may only have a year to live.
My wife and I have been tracking a property up for sale in Jacksonville, FL for quite some time. We decide to make an offer today. It’s kind of a low ball offer, but it’s not unreasonable.
Today I am actually in a good mood nearly all day – even after finding out I am looking at 1-5 years.
My wife and I meet with the radiologist. He confirms that the standard of care is to wait for pain before treating. He implies he will not provide the treatment, even if I want it. I tell him point blank I’ll find someone who will, if he won’t. This clearly surprises him, but he comes back and surprises me. He wants to check with some colleagues on this and then meet again. I agree.
We talk briefly about my impression that prostate cancer chemotherapy typically adds no more than two to three months. He tells me that’s generally true, but there are a number of different chemotherapies that can used one after another to extend life upwards of a year. In the back of my mind I wonder how much pain is involved in each one of these and if it’s worth it. Living an extra couple months, going through agonizing treatments, seems a poor choice to me. I decide to not bring this up. We’ve covered enough ground for the day.
One of my oldest friends has been great sending me encouragement and suggestions about treatments. Unfortunately, I had all the advice I could handle today and kind of jumped her about it in an email. She didn’t have a problem, just rolled with it. She’s great.
The advice I get from others is welcome most of the time, but then, out of the blue, it seems intrusive and confusing. Guess that’s just part of the process.
My birthday. It was a pretty good day for the most part. We did find out that the offer we made on the house was rejected. Oh well.
Couldn’t stop wondering if I’d be alive for my next one.
I call the “terminal illness” psychologist to discuss insurance. Turns out he’s not on my Preferred Providers list so it’s screwbolina for me. I have a separate deductible for mental health expenses and it’s so large it would require I see him for almost a year to meet it. The insurance companies list of psychologists in my area doesn’t include anyone who specializes in medically challenging cases or terminal illnesses, so I’m going to at least try him out.
Went out with the Real Estate Agent today. Found a fixer-upper that looks very interesting. Need to think about it.
Having a good time in Jacksonville with relatives except the proverbial mother-in-law. Will this be my last Christmas?
My wife and I meet with the radiologist in Jacksonville. This is the same guy who provided my initial treatment three years. He strongly recommends that I irradiate the spots.
More fun and games from the mother-in-law, except this time it went way too far. Our plans to move back to Jacksonville are off indefinitely. Thank God that earlier offer on a house was rejected.
I have my first meeting with the “terminal illness” psychologist. Seems like a very good fit for me. No point wasting time, I get right into the most painful questions including; why me, what did I do to deserve this, how bad will the endgame be, can I stand the pain, what will my wife do, and how is she going to handle this? Lots of tears. At the end of the session I’m exhausted, but I do feel a better.
Even though I have to pay out of pocket, I’m sticking with this guy.