If More is Better…

...then I should be more better

About a month ago I discovered that my PSA had doubled since January. It also doubled between October and January. So that resulted in yet another increase in my main meds (bicalutamide). I have gone from a daily dose of 50mg in September to 100mg in January to 150mg in April.

It’s not hard to swallow them—the pills are very small—so that’s not a problem. There is the cost factor and my razor sharp math skills have led me to the conclusion that the cost of three-a-day is triple that of one-a-day (you see, I passed 9^th grade math).

So far it appears that there is no increase in obvious side effects like green spots on my skin, appendages falling off, or decreased brain function (it’s already at an all time low). But there is one little thing that stands out; I seem to need more sleep and rest. I’m not sure that fatigue is even on the list of 437 contraindications (possible side effects) printed out on the paperwork that accompanies my prescription.

As for me, however, whatever the actual reason (age, mental breakdown, physical collapse, the heartbreak of psoriasis, or climate change) I get tired sooner, need a nap oftener, and just doing my normal daily chores (as assigned by my wife) brings on heavy breathing (not the good kind).

What’s next? Pretty soon I’ll just stay asleep 24/7 and avoid all that interfering social stuff that now goes on every day between naps.

axman

Beware of Omega-3 fatty acids–Are They now Your Enemy?

...but just a few months ago they were considered OK, even better than OK...

If you’re a man who has prostate cancer, by now you’ve seen the articles‑they’re everywhere‑pointing out the results found at the  Fred Hutchinson Cancer Research Center in Seattle. Men with faster growing prostate cancer are more likely to have it get even more aggressive if they eat a lot of fatty fish or omega-3 fatty acids. Those with the highest levels of DHA (an omega-3 fatty acid) were two and a half times more likely to have high-grade prostate cancer. This is exactly the opposite of what was expected. Common sense be damned, again.

The results are based on an old clinical trial – the Prostate Cancer Prevention Trial that started way back in the 1990s. I was one of more than 18.000 men in that trial (it turned out I was in the placebo - sugar pill - group) which was actually stopped early. Now, 15 years after it all started another strange result. While omega-3 fatty acids are still considered to be good for your heart; it seems they can be deadly to your prostate cancer.

In another twist, it seems that trans-fatty acids (bad, bad for your heart) cut your risk. Men with high levels of trans-fats in their blood were 50 percent less likely to have high-grade prostate cancer. The study doesn’t mention how much their heart attack or stroke risk is increased.

So, I guess I’ll go eat some French Fries and slow down my prostate cancer. I wonder when they’ll publish research telling me that wine and beer will make my cancer worse? I may have to quit reading.

axman

Burn Baby, Burn!

...or, cleaning up the mess

For much of the past week we have been burning large piles of brush, junk, limbs, and other debris. Over the long, long winter the wind and rain managed to knock down hundreds of limbs around the farm. Most of the pieces were small but some limbs were the size of small trees.

There seems to be something therapeutic about building and tending a fire‑maybe it’s a faint connection to our prehistoric DNA or something. It’s hard work cutting, dragging, and piling the pieces, but once the fire gets crackling its almost hypnotic and energizing. The heat can get intense but I don’t mind (of course the cold weather makes the heat feel better, too). The only trouble with using a fire to keep warm is that one side of you is always cold.

Others have told me the same thing‑a big fire has some kind of power to keep us mere humans hanging around feeding it. From time to time a hot ember lands someplace where there is a bit of bare skin but no permanent damage is done. The little burn holes in my sweatshirt and jeans don’t heal so easily.

So when I need to get away from my normal rat race, a good roaring fire is just the thing!!

axman

Thinking – a Mere Artifact of the Past?

No, I’m not specifically referring to my senility and overall mental decline – that’s bad enough, of course.

I would like to think I’m a thinker; wouldn’t we all. After 70 years of hanging around the planet I should have developed some skills of observation, calculation, and evaluation. I never got rich and I have some health problems, but there’s still that hope of making up my own mind – such as it is.

But when I take a close look at areas in my life it seems that thinking is discouraged rather than encouraged. Maybe I'm just terminally cynical, but... for example...

·       Every day somebody on TV or on the radio or even a Facebook ‘friend’ is telling me what to think politically. No facts are presented to help me make up my own mind. Mostly the communication consists of less-than-half-truths, clichés, and flat out lies. “Don’t think, just agree – and of course vote MY way.

·       Advertisers (name your media) do much the same. “Buy our product because this is a cute, but flawed, commercial.” Don’t think, just buy MY product.

·       Religion? People knocking at my door with brochures? Hate mongering? Not many facts to hang a decision on here. Don’t think, just believe MY way (or else) – and of course send money.

·       Now I don’t expect any of this to get any better and the whole conversation is a bit exhausting. So, I think I’ll have a glass of wine. You see, there IS still room for thinking!

axman

Why Doesn’t My PSA ever go Down?

Don’t I wish…

Every couple of weeks I put something on my blog that relates a lot or a little to my prostate cancer. It’s easier to write about other people and other issues. After my visit to the oncologist last week, I guess it’s time to focus on me again.

After nearly eight years, my prostate cancer is pretty well under control; managed but not cured. It’s still there but seems to be pretty quiet. But my low PSA doubled from September to December and again from December to March. That hadn’t happened in more than three years – since I started taking low dose hormones. My prescription was doubled in December and increased again just last week.

Most guys with incurable prostate cancer know that sooner or later, whatever treatments and meds they’ve had, their cancer will find a way to grow anyway and their PSA will increase – and increase. There are several levels of medications and I’m still at (almost) the lowest hormone treatment level. There is an inevitable progression once prostate cancer isn’t cured by first level treatments.

Progression is slow, no need to worry, no need to make any new decisions just now, but there will be a time when I’ll go to another level of treatment – maybe instead of pills, it’ll be delivered by injection or IV. Maybe there will be new medications to try or new and promising clinical trials. I’m not holding my breath waiting for a cure just now.

I’ll take my increased meds (hopefully my prescription plan will still pay) and wait and see. There really aren’t any changes in diet or exercise or lifestyle that might make a difference – I’ve tried to do all the right things already.

axman

When I’m NOT the Only Sick One

It’s easy to get hung up on your own problems, until …..

For several years now I’ve been writing little blurbs every few weeks about me. That’s what this blog was set up to do – focus on prostate cancer, what’s happening in the research field, but mostly how I cope (or don’t), what worries me, how my prostate cancer is progressing, what hurts, what doesn’t work any more, and on and on.

A couple of weeks ago my wife Carol started to cough a lot and feel weak. After a couple of days I convinced her to see a doctor in Arizona near where we were staying. Diagnosis - bronchitis and sinusitis; here’s a bunch of medicine. Should start to get better in a few of days. Five days later she felt worse. In addition to weakness and coughing she now had earaches and headaches. Back to the doctor. Ear infection, antibiotics, pain pills, and keep taking all the other meds, too. Then came the fever – higher at night, lower in the daytime. Finally when we got to Boise, now with an added fever, she ended up in Emergency for an IV of fluids to combat dehydration.

To complicate matters, we were in the process (slowly) of heading home from Arizona to Oregon by way of Las Vegas and Boise. We stopped often and Carol sleeps a lot on the way. Bertha (our big red truck) has reclining seats and a pretty smooth ride. I have come to realize just how much I depend on Carol to tell me where something is in the suitcase, where we turn off the freeway to get to the next Starbucks, or where the motel reservation printout is.

Friends have told us they had a similar set of symptoms and it took three or four weeks before they were back to normal. That’s a long time. She doesn’t complain except that she’s annoyed she can’t walk without feeling weak and dizzy and that she nods off in the middle of a conversation or watching a TV show.

Home in Oregon and its back to the doctor (three different locations – three doctors). I wish I could do more to help. Other than being there and doing what she needs at the moment, I feel pretty worthless. But we’ll both feel better in a week or two – for sure!

axman

The Cold, Cold Facts

What’s new in Prostate Cancer Treatment?

Every year or so I take another look at what’s happening (or not happening) in the prostate cancer wars. The answer (from my standpoint) in a nutshell is: not too much.

For eight years now I’ve been waiting for the next big breakthrough in prostate cancer treatment. All the ‘miracle’ cures I’ve been able to track down have proved to be less than advertised, anecdotal, unsupported, or downright fraudulent. That doesn’t mean there haven’t been improvements, new approaches, and new and better drugs (for example, keeping me alive 2.5 months longer is a step in the right direction but NOT a miracle cure in my estimation).

Genetics

Advances in the study of genetic inheritance may help in future prevention – I’m sure it will help my grandkids and their grandkids. This is a long, long term project.

Diagnosis

The PSA test is imperfect, new urine tests are being tested, biopsies in color are being developed to find cancers that don’t show up in black and white - and the controversy over testing or not testing rages on. It still seems that being diagnosed early is a good idea but there can also be a misdiagnosis and needless treatment. I am glad I was diagnosed when I was.

Vitamins

There IS such a thing as too much of a good thing. Vitamins that can help can also harm if taken in very large quantities. Diet and exercise and vitamins are good. But they aren’t a silver bullet.

Treatments

As time goes by, surgery, radiation, and other procedures become refined and more precise and do less damage to other organs and functions. This is a slow process but a good one for the men who will have these treatments in the future.

As I grow older and older I am still glad that I am getting older rather than the other dubious alternative. Maybe the big breakthrough will happen next month

axman

Life (ours) Doesn’t have to Slow Down Unless We want it to

…it’s (almost) always a choice

We’ve been here in the vast Arizona desert for more than three weeks now. That’s good. We’ve become tan, rested, and done an amazing amount of necessary work. We’ve been busy 12 hours a day (including some time to drink wine, of course) but it seems mostly like fun.

We have chosen to stay busy in our physically and mentally declining years (our kids and grandkids would probably say something even stronger about the decline part). There will probably come a time when we have no choice but to slow down but we’ll put that on the back burner as long as possible.

This week we had visitors in the desert – Tom (co-author) and his family were here five days so we could work on the new book – but mostly we hiked and jeeped all over the desert and a good time was had by all. His kids loved the desert and particularly bumping around the dirt roads and trails in jeeps. Jeeping through the desert in the dark (with the headlights on, of course) was the most exciting.

Oh yeah, Tom and I signed a publishing contract and now have to deliver a completed manuscript by July 1st. That seems like a long time from now, but… how hard could it be (he innocently asked)?

Carol has been doing bookkeeping and taxes for a friend and now is doing ours and those of a couple of the kids.

And I picked up a couple of grad students – non-traditional, at-a-distance learners. I work with them on courses and research – all by email and websites. It only takes a few hours a week and I enjoy it.

axman

A Secondary Benefit of Having Cancer

OK, there really aren't ANY benefits from cancer , but…

After a couple of years battling prostate cancer I decided to write a book about it. I enjoyed the writing and illustrations/cartoons (Real Men Get Prostate Cancer Too) and I think it was therapeutic – it kept me busy and positive. Of course it would have been nice if it sold a few thousand more copies. Oh well.

Now I’m writing another cancer book (about clinical trials) – with a partner this time. Tom is my oncologist and a well known cancer researcher. There is even a publisher who appears to be interested in it. Go figure!

I’ve been working on it - on and off – for more than a year. But now we’re looking at coming up with a finished manuscript in just a few months.

This is both exciting and a little frightening. There is a lot yet to do and so little time… My first book was self-published so I didn’t actually have to satisfy anybody but me. This time around there’s a co-author and an all-powerful publisher. I won’t have the same control but still all of the same responsibility – to myself, my co-author, and the publisher. Guess I’ll have to learn to live with the stress. Of course, I wouldn't be doing this if I didn't enjoy it.

axman

Getting Away Yet Again

The benefits of variety in life – at least MY life

Being in the same place and doing the same thing (more or less) day after day and week after week is my idea of hell.

Maybe it’s just my bad Karma, a highly regrettable character flaw, or just plain old fashioned wander lust. But when I’m traveling or camping or just doing something new and different and at least a little challenging I feel better. Mentally and physically – my aches and pains diminish (a little anyway) and my attitude improves (a little anyway). Don’t ask my wife to verify this; she’ll say I’m a grouch all the time.

Now we’re in Arizona for a few weeks of fun, rest, and a little work. When it’s over the next little adventure will begin. …and then the next one and the next one and the next one...

I suppose life would be easier if I was content to stay home and bloom where I was planted – but I’m not all that ready to be planted yet!

axman