Monday, Feb 26, 2018
Going away from home for a while. 

For some odd reason I thought that this year's winter Myrtle Beach would be different - that being in a warmer climate would somehow make me feel better and some of the things I've been working on would magically be cured.

Here are some improvements that I noticed while at  Myrtle Beach: 

Incontinence - while I continue to do Kegels religiously, and my leaking is better, I still have months to go before this issue is fully resolved. I have several nights where I only have to get up twice a night to pee (this may be the best I'll ever do). But every once in a while I'll be up three or more times. Luckily I can practically sleep walk to the bathroom, do my business, and crawl back into bed and fall right asleep. On those few nights that I get up a lot or can't fall asleep, a nap is in order the next day.

 I have noticed a few things: I used to "pee freely" in the morning and in the evening/at night. During the middle of the day I just leaked into the pads. But now I'm peeing pretty much around the clock, and the pads are not as full as they used be, but I change them quite frequently because I can't sitting around in my own pee - I worry about odor.  

Another thing that's kind of odd is that the "urge" to pee has slowly returned. Initially after surgery it was more of a guessing game. I guess when nerves are involved there is some healing there as well.

As far as my back, I walked on the beach a few times a week, and I did strengthening exercises a few times a week. I tried to do my stretches every day, followed up with some time in the hot tub. There were times when my back felt great, and other times when it was tight as hell. When my doctor says it will take a year to two years to fully heal, I now believe him. It's been seven months - I just have to continue to do the work. There are no shortcuts.

I think I noticed a change from taking XTANDI - loss of muscle mass. I looked in the mirror the other day and my arms and legs looked skinnier. I will need to do some weight lifting when I get back home but I may need some help from my physical therapist about what exercises to avoid. I don't think I need to lift very heavy weights to counteract the hormone's effect on muscle mass.

We have still done and seen a lot of fun stuff at Myrtle Beach this year.  I hope that if/when we come back down next year that I am not as limited physically so I can walk faster and dance the Shag!

When we get back home in early March I'll find out my latest PSA scores - this will tell us if I stay on Xtandi or have to switch hormones. 

Friday, Jan 26, 2018

Thoughts on incontinence.

As I mentioned in an earlier post, I experienced my third bout of incontinence in 2017, after spine surgery and having a catheter in and out for the month of August.

After surgery my first efforts at recovery involved a lot of walking. After a while (it seemed like forever to me) my surgeon agreed to physical therapy for my back, which was very stiff. When that was completed my back felt much better and I then concentrated on incontinence.

I started physical therapy for incontinence in late November and while I am still not 100% continent, I am much improved.

2018 will be a year where I continued to work on my back and my bladder. I will continue to walk, do stretching and strengthening exercises, and do my Kegels as instructed by my therapist.

I'm not a patient person by nature. My surgeon says my back won't be fully healed for another year and a half. My urology therapist says it will be months before I'm fully continent. The important thing is to keep at it - what other choice do I have?

January 26, 2018

Thoughts on XTANDI.

I started taking XTANDI (Enzalutamide) in late August. When I first met with my oncologist after taking XTANDI, I was claiming that I didn't notice any side effects. But shortly after that, I experienced hot flashes again (they had stopped after having Lupron injections for a while). I then started  having bouts of fatigue where I was napping for two or three hours a day. Then my sense of taste was affected - most noticeably Dunkin Donuts Coffee tasted really bad - so much so that I couldn't drink it. But all of these side effects ended or greatly reduced after a while.

The fourth side effect I noticed was a pain in my upper thigh, close to my hip. It really hurt when I got up after sitting for a while, and would ease off after I loosened up. Common sense
told me it was muscular, and my oncologist verified that it sounded like a side effect of XTANDI, but deep down I was worried about a reoccurrence of cancer.

I asked my oncologist the leg pain could go away - just as the other side effects had. This was on a Monday (he said yes). By Wednesday morning the pain had disappeared (after a month). So I guess I need to be patient if I experience more XTANDI.side effects. I also need to talk to my doctors and/or nurses when I notice some weird symptoms rather than assume that my cancer is back.




  

Incontinence, continued

I may have mentioned this in an earlier posting, but I have had incontinence three times due to prostate related treatments. 

The first time was 6 years ago after my original prostate surgery. I was catheterized for 3 weeks due to swelling, but after that subsided I learned how to do Kegel exercises and regained continence on my own. I don't remember how long it took. I continued to have a strong urge to pee but at least I wasn't leaking. I used the med Oxybutynin for quite a while but I gradually learned when and where not to drink lots of liquids, and only used Oxybutynin when we were on trips. 

The second time was January of 2017. I had a procedure called a cystoscopy (no fun) where they stick a tube up your penis to have a look at your bladder. You're awake and it is rather unpleasant. That night I couldn't pee on my own so we went to the emergency room and they catheterized me; I had the catheter in for a week, during which I had a UTI.  

We left for a month in South Carolina shortly after and I was incontinent while we were down there. I thought I could regain continence on my own but I was leaking the whole time we were in S.C. (no fun!). When we got back I found out that there is physical therapy for incontinence; by the time I started it was April, and continued it until June. I think it took long because: 1) I was 6 years older 2) I had the UTI complication. 

The third time was after my spine surgery on July 25th. The entire month of August was spent getting a catheter put in, having spasms where I couldn't pee, and going to the ER to get catheterized again. I got another UTI. At one point my pee looked like coca cola. After three trips to the ER, the catheter was finally removed. They taught me to self catheterize just in case. 

While I was healing from the surgery, my surgeon just wanted me to walk. I did the Kegels on my own. He finally agreed (at my prodding) to physical therapy for my back which helped my back a lot. I continued the Kegels. Finally I started PT for incontinence again in November. That was four months after my surgery, but I am counting three months since they stopped having to catheterize me.

My original therapist, a woman, retired. My new therapist is a guy. I liked/like them both. I was a little concerned that because of my spinal surgery, PT may not work as well now. My new therapist says that if you can control the defecation muscles, you can train the muscles that control urination. 

He also says that continence is regained in the following order: 1) sleeping, 2) sitting 3) standing 4) walking 5) lifting. I'm getting closer to controlling sleeping and sitting. I'm hoping that these will be in good shape by the time we leave for S.C in late January. I'll continue to work on it while we're in SC and most likely get another course of physical therapy in March. Hopefully I'll be squared away by spring!

XTandi, continued

The list of side effects from Xtandi keeps growing. 

My sense of smell and taste has been affected. My oncologist verified this and had a term for a change in tastes due to cancer meds. 

I used to like Dunkin' Donuts Coffee. I tried it in a couple of locations and it all tastes the same - blah! I tried Starbuck's and it tastes funny too. I guess I'll be a tea drinker for the time being (I couldn't tell you what good tea tastes like). 

I also have these periods of fatigue that seem to come and go. Sometimes I'll take a nap, sometimes I don't have time and that fatigue goes away. My oncologist calls it a "cancer fog".  

I am also on Lupron and that gave me hot flashes but I didn't notice any worsening of this side effect. In fact it seem to have subsided a bit. 

The latest side effect is very odd. If I sit for a while and then try to get up, I get a pain in my thigh (about a five on a scale of one to ten) and a feeling of weakness in that leg. If I walk around a bit the pain and sense of weakness goes away. This has been going on for about a week.  

This is kind of disheartening because my back stiffness, thigh numbness, and incontinence all seem to be improving (though slowly) and then I get another physical ailment. I was a little bummed out yesterday but I'm back on the optimism horse again today. I realize that some people have it so much worse. Plus as with the hot flashes, maybe this pain will be short lived.  

If I'm lucky, I'll be on Xtandi for 2 to 4 years before it stops working. Then it'll be on to another drug? I'm hoping that they'll have immunotherapy working for prostate cancer by then.

I mentioned some short term things that I wanted to accomplish going forward.

I was able to complete a Polish class, which will help my genealogical research.

I also completed a genealogy class. 

But I passed on tutor training for Literacy Volunteers for now.

My back was just too stiff for me to sit in class all day (the other classes were a couple of hours). Plus my continuing incontinence makes me nervous about being in public for long stretches.

My back is better now, and I start physical therapy for incontinence tomorrow.  I think I should be squared away to start tutor training in the spring.

Maybe others would be more determined than I am, but you have to be comfortable in your own skin while recovering from advanced prostate cancer treatment.    

I thought there were no side effects from Xtandi, the new high-powered hormone that I'm now on. I think I spoke too soon.

I take warfarin because of a heart defect - it reduces my stroke risk when I go into atrial fibrillation. I get monthly blood tests to check my warfarin levels, and they started getting inconsistent after being steady as a rock for a long time. My cardiologist checked the literature and sure enough, Xtandi can interfere with Warfarin. He made a dosage adjustment and it appears that my warfarin levels are now good.

I went in for a regular checkup with my cardiologist and my echocardiogram showed my heart rate to be elevated. He scheduled me for an EKG and possible holter monitor the next week. In the meantime he told me to up my metoprolol dose from 50 to 100 mg, and to check my heart rate on my home blood pressure machine.

While I was seeing some slower heart rates, I was still seeing several fast ones as well. The EKG showed my heart rate to be fast, and he increased my metoprolol dose to 150 mg, and sent me home with a holter monitor for a day. 

I haven't heard the results of the holter test, but I'm thinking I'll be stable again.

Bottom line: powerful hormones can affect your body in many ways. 

PS - my PSA has dropped from 20 to 10 to 7.5. Every month should show lower readings. This is due to the Xtandi.

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.

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.  

Angie drove me to the Hartford Hospital emergency room on Friday, August 11 at 5:00 AM.

Based on an earlier ER visit, I told them that I was in a lot of pain, so we got attended to fairly quickly (it was uncomfortable - pee was building up in my bladder).We had warned the nurses that I required a smaller catheter (14) because of a stricture, but they knew better (sarcasm intended) and tried a medium catheter (16) with no luck and much to my discomfort. They then put in a 14 with better luck. We were back home by 7:30.

A day or so after that ER visit I developed a UTI (Urinary Tract Infection), probably to the multiple efforts to catheterize me  (unbeknownst to me at the time). The pee coming into the catheter looked like the river that Moses changed to blood in the movie "The Ten Commandments".  I got in touch with my urology doctor's office, and they thought it was due to radiation damage from 6 years ago together with having a catheter.

On August 15th I started leaking pee around the catheter, so I called the on call urologist. He instructed us to once again go to the emergency room. At least this time the pressure was being relieved by the leak. This visit was an exercise in futility. We got there at 10:00 PM, and waited for hours to get a room, then hours to be seen by a nurse. We went through the same routine about catheter size, but at least they used a 14 catheter. The only problem is that they removed the old one, cleaned it and put it back in.

One good thing that happened during that visit is that the doctor did a blood test and discovered that I did have a UTI. She got me on Keflex ASAP and that would cure the UTI over the next week or so.

BLADDER WOES

My back has been great - I celebrated 3 weeks this morning and there have been no issues or pain.

I wish I could say the same for my bladder! Spinal surgery can cause bladder and bowel issues. My bowels worked fine when we came home. The bladder was another story.

They had catherized me during spinal surgery, and they removed that catheter before I went home. I was "leaky" but able to urinate some. The problems were that I started having bladder spasms the second night home from surgery - Monday, July 31st. Dr Kesler's nurse Amanda wanted me to come to their office for a bladder scan, to see if I was  retaining urine. I told her that I was still too shaky/weak to come to their office. I finally was able to come in on Thursday and I was retaining urine ( 500 ml).

They catherized me that day (Thursday, August 3rd). This catheter stayed in until Thurday Aug 10th. This was fine with me because without the catheter my sleep was affected by nightly 2 - 3 hour bouts of bladder spasms. During the spasms my bladder "shut down" and as soon as they stopped I would/leak/pee. With the catheter, there were no bladder spasms and I slept like a baby.

Amanda did another bladder scan on Aug 10th and I only had 27 ml in my bladder, so they took the catheter out. That very night, I had bladder spasms again that started at midnight, and were still going strong at 5:00 AM. I called the on call urologist, and he instructed me to go to the Hartford Hospital ER.

To Be Continued on the next page

The next few days consisted of my getting stronger - I slept a lot and my appetite returned. My wife Angie was wonderful - helping me dress and bathe.

The words for me were "BLT" - no bending, lifting or turning. Angie had these signs all over the house.

Around two weeks after surgery, and had a follow up visit at my surgeon's office. They said I was doing great and they removed the staples. It was time for me to keep improving and start doing things for myself.

I was up and walking the day after spine surgery. They also had me walking a small set of stairs. Angie & I thought I would be spending a few days in a rehab center. The physical therapists were against it - they thought I was doing well enough to go home, plus we avoided the chance of infection.

I think that I received excellent care while in St Francis Hospital - from the doctors all the way down to the people that cleaned the room. I tried to thank anyone who did anything for me, and as a result I got a nickname - the "Rock Star Patient". I had the most serious surgery of the floor, and I complained the least.

Coming home was a little scary - the physical therapists showed us how to get in and out of bed, get in and out of chairs, etc. I didn't have much of an appetite after the surgery, and this continued for a few days at home.

I started having bladder spasms on the second day - these would wake me up from a dead sleep. We called my urologist, and they wanted me to come in for a bladder scan, which we resisted for a couple of days because I was so wiped out. We finally went to the office and the bladder scan showed that I was retaining urine. They put in a catheter.

I was nervous about the catheter because I had some bad experiences with a catheter in the emergency room. This was a piece of cake. I immediately felt better and started sleeping for 10 hours at a clip. I was also taking a daily nap - I was making up for months of sleep deprivation.    

July 26th was the date scheduled for my back surgery. There wasn't much time to prepare mentally - but I was ready. The past few months had been very painful. I had sharp pains in my hamstrings when I tried to get out of a chair. Sitting on a toilet seat was like sitting on a bed of nails. I woke up several times  a night with numbness in my right leg. As scary as the surgery sounded, I could not go on much longer in the state I was in.

I had to meet with my urologist, my cardiologist, my general practitioner and get their approvals.
Angie drove me to St Francis Hospital early in the morning of the 26th. My daughter Lisa came down and stayed the whole day with Angie. My daughter Heather met them for lunch.

The level of support I got in the days leading up to the 26th was amazing - I think it helped me to gain strength to face the challenge - spine surgery is very serious. The surgery lasted over 5 hours. During the surgery they cleaned out a diseased vertebra, repaired a cracked vertebra, and fused everything together with 4 rods.