A few things happened in November. I finished physical therapy for my back and it feels better. I still need to continue to walk and to do the exercises that I learned in PT. I'm not sure what my "new normal" will be, but I'm quite sure I'm not there yet and that I will have to do months of work. I also got a list of what I can and cannot do with 4 titanium rods in my back.

My thighs continue to be numb, but I think less than it was before. It's amazing how slowly things heal when nerves are involved. Time and exercise should fix this. I'm just not a very patient person.

I continue to do my Kegels religiously but three months since they removed the catheter post-surgery I'm still incontinent. I keep a log and I think things are improving but slowly. The good news is that I start physical therapy for incontinence tomorrow. It worked once before so there's no reason why it shouldn't again.

I will continue with November updates in the next day or so.

Living with cancer

I was hoping to really get involved in volunteering after I retired. One of the things that attracted me was Literacy Volunteers. I was supposed to start training last week, but I decided to notify them that I wasn't quite ready for that. It's a big commitment that requires a lot of work, and I think I need a better feel for how I'm going to feel and when I'm going to have the energy to do this.

I did sign up for an intro class in Polish - that's an hour and a half a week for 8 weeks. I also signed up for a geneology class that is two hours for 4 weeks that starts after Polish ends.

We love to travel, but I think we need to not plan too far out. This is a change for the both us. We're looking at an Alaskan cruise for 2018.

Right now, I think I need to think about short term interests. Maybe future meetings with my oncologist and cancer psychologist will change my outlook for the better. I hope so.

Some good news, some not so good.

My radiation treatments were completed in September, and I really didn't have much in the way of side effects except some minor fatigue. A few naps hear and there took pretty much took care of that.

My new hormone - Xtandi - does not appear to be causing me any new problems. It's supposed to lower my PSA - it has - my PSA was cut in half after a month's worth of treatment. I naively thought it would reduce my PSA to 0 in a month, but after reading about the experiences of other men with advanced prostate cancer, I realize that it may take 2 or 3 months. I have an appointment with my oncologist next week and I have resolved not to freak out (or not) until I see him.

I had an appointment with a psychiatrist who specializes in cancer patients, but he called me the night before and moved my appointment up. I was stuck in the middle of  Hartford traffic but made it on time, but then he didn't show up on time so I left. After I cooled off, I realized that my behavior didn't help me. His office called and apologized, and we set up another appointment. I think that I will need help dealing with my cancer.

My back continues to heal from the spine surgery. I am up to 1 3/4 miles walking. But my back is really tight. I asked my surgeon to recommend a physical therapist to help me regain strength, flexibility and balance. He is sending me a script to begin that process.

As I write this, it's 10 weeks since my spine surgery, and 6 weeks since they removed my catheter and I still am experiencing incontinence. This is normal, based on earlier experiences, but the impatient part of me is not happy. I continue to do my Kegel exercises regularly, and have started to (once a week at home) capture my pee (I have a couple of collection bottles), as well as weighing the urine pads. I am hoping that by comparing the totals, I should see the weight of the pads go down and the volume of  pee go up. This hopefully will help keep on working on this really bothersome problem. You may have to be anal to do this, but I need some measure of success to keep me going!

When I underwent spine surgery, they sampled some of my spine and the lab test showed a bacteria that sometimes affects people with "hardware" in their bodies. This usually happens 10 years or so down the road. My lab test came back positive, and I just had the hardware (titanium rods) inserted.

I met with an infectious disease doctor and he thought the positive test was due to lab contamination, but just to be safe, he ordered blood tests, which he'll go over with me next week. If the test was positive, I would need to have a port installed to administer an antibiotic for about a month. Here's hoping the test is negative.

I also made an appointment with a psychiatrist who specializes in cancer patients. I haven't suffered any depression yet, though I do admit that I was bummed when I heard that the average survival rate of someone with my cancer is three years. I've never been to a psychiatrist, but I think it would be a good idea to gain some coping skills because I will probably need them in the coming years.

I have been taking hormone XTANDI for a few weeks now and I don't have any side effects beyond those that I had with the Lupron injections. I had headaches for 3 or 4 weeks and then they went away when I started on Lupron. There were no headaches so far with XTANDI. I continue to have hot flashes but I kind of just ignore them.

I'll be getting blood tests every 6 weeks and my PSA should drop to 0, which would mean that my cancer is in remission.

I started radiation treatment on September 7th. I was surprised at how short the treatments were - 15 minutes. I have a total of 10 treatments so I'll be done by September 20th. The last time I had radiation treatment I was very tired by the time the Friday treatment ended; I had to have about 35 treatments and I was tired a lot.

I did take a nap after these two treatments, but then again I've been taking a lot of naps since I had the surgery 6 weeks ago. I don't think I'll have that level of fatigue that I had the last time I had radiation. I bought some calendula cream in case the radiation irritates my skin, but that doesn't seem to be happening so far.

It seems like there have been improvements in radiation therapy since I had it 6 years ago. Just so long as the radiation knocks out the cancer!

My catheter was removed (after four weeks) on August 28th. At that time, a nurse showed me how to self catheterize. It sounds awful, but I'm actually better at catheterizing myself that some of the ER nurses! I only had to do it a half dozen times - I found that between my own peeing and leaking that I wasn't retaining any urine - when I catherized I wasn't collecting much urine.

However I was incontinent for the third time in my life. There are three types of incontinence - in bed, sitting and moving. Unfortunately I have the first type - which means total incontinence. Fortunately I went through physical therapy for incontinence in the spring so I remember the correct way to do Kegels and I'm slowly improving. At this writing, it's been six weeks since spine surgery. It will probably take 3 to 4 months for me to regain total continence.

I am getting out but I'm afraid of an embarrassing leak - I wear a Depends and insert a pad inside when I do go out  This give me some confidence in social situations. As I continue the Kegels I will gradually only wear pads, and then lighter ones. I've done this before so I just have to be patient, which is not one of my strong points.

People have no idea I wear pads, but I am self conscious. I worry about odors, so I change pads often, take a lot of showers, and make liberal use of powders and cologne.

August 24th was a day that made me nervous. I had appointments with both my oncologist and the radiation physician. Radiation was something I went through 6 years ago for my prostate so I was familiar with what that involved. What I was more nervous about was my oncologist visit. He would be managing my stage 4 cancer going forward.

Dr Kamradt (the oncologist) is a really nice guy. He explained that I would now be taking a more powerful hormone called XTANDI. I'd be taking this orally in conjunction with Lupron which is an injection every 6 months. I'll be meeting with Dr Kamradt every 6 weeks; prior to that I'll be having a blood test to monitor my PSA and testosterone levels.  He ordered a blood test that day and my PSA was 19. The idea is to get it down to 0.

XTANDI is unbelievably expensive. He had the pharmacist submit our case to the Patient Advocate Foundation and we qualified for a much lower cost.

I guess you have to be careful about what you ask for. I asked him what the expected survival is for somebody who had what I have. He told me three years, but he thinks that because I'm younger and in fairly decent health, that I should be able to be on the outer range of that average. That is a sobering thought.

Angie & I also met the radiation doctor, Dr Boyd, who explained the treatment regimen. It'll only be two weeks this time.  He set me up for the initial assessment on August 29th where they take a bunch of measurements and set up the schedule for treatment. They'll start right after labor day.

On August 28th they removed my catheter again and this time I've seemed to have healed from the spine surgery (5 weeks) and my bladder is doing better. I will have to face incontinence once again. I'll address that in a future post.