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.
Saturday, September 9, 2017
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!
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.
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.
Friday, September 1, 2017
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.
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.
My urologist's nurse wanted to check me out, but we were frankly tired of all the trips to Hartford and Farmington, so on August 17 she sent me to Manchester which is closer to our home. We had the pleasure of meeting Nina. Besides being smart (she was an APRN) she was very empathetic.
When she heard that they had put the same catheter back in in the ER, she put in a new one. She also took another blood test, and extended my prescription of Keflex. We went home thinking our catheter nightmare was over.
But on August 23rd around 10 PM, I started leaking around my catheter again. We called the on call urologist who once again directed us to the ER. This time we lucked out. We had a physician's assistant who flushed out the blood clots (this had been the cause for the last two ER visits), and a nurse who was one of 3 people who were really good at putting in a catheter (the other two were a urologist in the office, and Nina). all we had to do is lay low until August 28th, when the catheter was finally removed for good.
Having a catheter put in while you're awake is not painful, but unpleasant. Some of the ER nurses need to have one put in them and maybe they'd get better at it. Like I said, there are actually people who are good at it and the experience while not pleasant is better.
When she heard that they had put the same catheter back in in the ER, she put in a new one. She also took another blood test, and extended my prescription of Keflex. We went home thinking our catheter nightmare was over.
But on August 23rd around 10 PM, I started leaking around my catheter again. We called the on call urologist who once again directed us to the ER. This time we lucked out. We had a physician's assistant who flushed out the blood clots (this had been the cause for the last two ER visits), and a nurse who was one of 3 people who were really good at putting in a catheter (the other two were a urologist in the office, and Nina). all we had to do is lay low until August 28th, when the catheter was finally removed for good.
Having a catheter put in while you're awake is not painful, but unpleasant. Some of the ER nurses need to have one put in them and maybe they'd get better at it. Like I said, there are actually people who are good at it and the experience while not pleasant is better.
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