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

Yet another Escape from the Cold

How many times do I need a getaway? As many times as possible…

I’ve given up on staying warm – especially when I am outside all day in the wet and cold at least pretending to work. Our new garage is at a point where we can close it up and head to Arizona to thaw. I intend to warm up, rest up, and cheer up in the sunshine. I also intend to do some reading and hiking and napping and drinking – not necessarily in that order.

There is always something more to do but most of the time it can wait until I’m ready to do it – not always, but nearly always. And there’s always the possibility that somebody else will do it while I’m gone – maybe leprechauns or fairies or elves or menehunes… - I’m not holding my breath.

More and more I am accepting that I actually need more 'down time' than I did in previous decades of my life. Invincible ends at some point.

And I really do need to get some work done on the new book – with Tom my co-author. Maybe I can convince him to do all the writing and I can wander in the desert and enjoy the warm weather – now that’s a plan worthy of more consideration.

axman

Cold, Colder, Coldest…

…and more Coldester (OK, so I just made that up – but it IS accurate)

Ever since we returned from Hawaii in early December I have been cold. There has been an unusual preponderance of cold, ice, snow, and torrential rain this winter. I have been working outside nearly every day to try to get our new garage finished. It has been 50 years since I worked outside in the cold on a daily basis – my night job pumping gas while I was in college.

Am I cold all the time because of advanced age, serious disease, senility, being cursed by Trolls, or some combination of some or all of the above? I wish I knew.

Whatever the cause, I just can’t seem to get warm – and another cold spell is on the way. There’s a lot yet to be done on the garage, including the digging, leveling, and pouring of a concrete floor. That should help keep me warm, hopefully.

But all is not lost. When it’s done (mostly) we’re heading to the Arizona desert for a month or so to warm up. The downside? It has been unusually cool in Arizona this winter, too. I have concluded, however, that a daily high of 60 in Arizona beats a high of 30 in Oregon – by my calculations that's twice as good as a matter of fact.

What are your experiences with the cold? Does age or cancer make a difference or am I just a wuss? Be gentle with me…

axman

2010 and 2011 and all that Stuff

Tempus Fugit – it really does!

Happy New Year yet again. 2010 was a pretty good year (after all, here we all are in 2011). In 2010 I celebrated my 70^th Birthday and 50^th Anniversary (with the help of my loving and eternally tolerant wife, of course). 

And I am entering my eighth year with prostate cancer. I may still be crazy after all these years but my cholesterol, blood pressure, PSA, and weight are all still under control. and NOT going crazy. I’ll take that as a good way to start any new year.

Life is good, time flees (what tempus fugit actually means), and there are still pages and pages to go on my Bucket List.

Maybe 2011 will be the year of the cancer-cure breakthrough! …or maybe not. That's probably not within our realm of choices so don't spend a lot of time worrying about it.

 All you guys living with prostate cancer keep hanging in there (it certainly beats the alternative) and actually do all the things you want to do (within some fuzzy and probably irrelevant legal limits anyway).

axman

You Can Always Go Home Again...

Especially for the holidays

We just returned from two great and glorious weeks in Hawaii. It was relaxing and refreshing. I noticed that I was far enough away from home for my pains to subside, my stress level to drop, and I even slept better. Coming home was good, too, it always is, but it was cold and all that work that needed to be done was right there...waiting. On the bright side, it's time for the kids and grandkids to come by for dinner and gift giving and a little sherry and egg nog.

In Hawaii we reconnected with some old (really old) friends from 20 or 30 years ago. Most of them, like me, were in various stages of disease and decline but it didn't seem to matter. There were strokes, knee replacements, an abundance of arthritic pains, and even one friend with Stage 4 prostate cancer. He's in chemo and weakened but still has his irreverent, self-deprecating sense of humor and was constantly cracking jokes.

I came home inspired to be as strong as they all seemed. I intend to laugh more, focus less on my aches and pains, and especially to avoid morbid thoughts about my own mortality. Sounds like New Years Resolutions - time will tell.

So, Merry Christmas, Enjoy Life, and have a Healthy New Year

axman