March 29, 2010

We Got To Get You A Woman

As funny as I thought I was being with the Helen Reddy post, I promised Mary to lay off the references to the whole 'woman' thing.

With this post I am hoping for little leniency, or forgiveness? However, come to think of it this has nothing to do with being a woman or feeling like one.

Being a Todd Rundgren fan it just came to mind and I wanted to share.

Why? When your PSA goes down 40% in 10 days you have to sing about something!

One final note, as we have in the past, we are cautiously optimistic for long term results. Yes it's good news and without a doubt I am going to enjoy the next 28 days!

March 28, 2010

What's going down?

Tomorrow is my monthly check-up, you can probably guess I'm a little nervous.

After five years, close to 75 PSA tests, and I would guess over 100 doctors appointments, you might think I would be used to this routine. While the routine is old hat, the anticipation and lead up to the results are something I can't ever imagine getting use to.

This subject is a topic that gets bantered about on some of the Prostate Cancer message boards. I can't express to what extent the quality of men's lives are impacted by this disease. With my case this might sound like a very obvious statement, but there are millions of men out there that have surgery, radiation or just choose to monitor their condition, that go through this anticipation periodically as well. Whether it be every month, quarter or year, these men go through a similar period of time leading up to their test results that mirrors the monthly anguish that I experience anticipating my PSA tests. This is one of the aspects of our experience that the general public may not be able to completely understand. It's very taxing.

I usually do pretty well with this and probably will do so tomorrow, but I do wonder what the results will be. After starting estrogen (DES) ten days ago, this will be my first test. My last test indicated my numbers were increasing rather quickly. On March 14th my PSA was 193 and I didn't begin the Estrogen until March 18th, so my PSA before starting DES was probably over 200. Tomorrow, well we'll see. I don't know how quickly we will see a response to this new treatment. I am struggling to make a clear, concise point and that IS my point.


I was able to get out today and play disc golf. It was good to see and play with Tim and E again. Eric, it's been far too long! I played pretty good, nothing great, but it was a pain free round. Since starting DES, overall my body feels much better. My hips hurt less and my legs are better and I am still able to avoid the Advil.

Finally, tonight was a good, quiet family night. We caught up on a few things we had recorded and basically just enjoyed the relaxation and each others company. It's Easter week and I look forward to the emotions of the week.

Peace be with you all.

March 22, 2010

I am strong, I am invincible

I'm just over three days into my new treatment and I already have a new appreciation for pastels, high heels and was contemplating shaving my legs this morning. Yes, the estrogen must be working!

Seriously though, here is a brief re-cap of the previous few days:
On Thursday I had an appointment with a radiology oncologist. The purpose of this meeting was to receive a single radiation treatment in each breast in preparation for a new treatment. After arriving at his office, it quickly became apparent why we liked this doctor when we originally visited with him in the fall of 2005. He's a great communicator, listener and even wrote me a prescription for my excessively dry eyes. The radiation treatment lasted about 5 minutes and the best way to describe it was similar to a dental x-ray, but the machine runs for 90 seconds. The only potential side effects were the potential for redness and hair loss. The former did not happen and I lost all the hair on my chest about a year after starting Androgen Deprivation Therapy.

Later on Thursday my supply of DES (woman's Estrogen) arrived in the mail. I also stopped and picked up a prescription for Coumadin, a blood thinner I now have to take to prevent clotting.
I'm not sure if DES works this quick but by Saturday morning I was feeling many fewer aches and pains, enough so that I played disc golf in the snow!

For the most part, no other changes, except for my looks? Here's a photo from yesterday.

Oh, yes, I am wise
But it's wisdom born of pain
Yes, I've paid the price
But look how much I gained
If I have to
I can face anything
I am strong (strong)
I am invincible (invincible)

March 17, 2010

What tomorow has in store for me

Time changes many things, including treatments for my Stage IV Prostate Cancer.
Five years later, we face a new course, a new direction.

With my PSA climbing considerably over the last 6 weeks and limited treatment options to chose from, we have decided that I will start DES, a form of women's estrogen. My friend Howard has a good write up here at (

There are two potential side effects, DVT aka Deep Vein Thrombosis (blood clots) and/or Gynecomastia (breast enlargement). The former can be managed with Coumadin (Wafarin). The latter requires a one time treatment of radiation to my breasts.

So tomorrow begins the next step. I pray for good results. I pray for the longevity of this treatment. I need a mental break, I need a beach.

March 16, 2010

Perspective, revisited

A note to my two very dear friends, I am thinking about you today.

I will pray for you both tonight, as I do so often.
Perhaps time has healed your sorrow in such a way that you are able to get through
today with as little pain as possible.

May the grace and peace of God be with you both.

March 11, 2010

I am quite honored

I received an email last month that I was literally on the verge of deleting, but I am quite relieved that I didn't. I have been invited to attend a "Patient Advocate Summit" for Dendreon Corporation. If all the red tape with the FDA is cleared, this Spring they are launching a new treatment called "Provenge'. I have written about it here on numerous occasions, as far back as October 2006.

Provenge has always been on our 'what's next' treatment list. A quick description is this: blood is extracted from the patient and sent to Dendreon where is it infused with an immunotherapy. It takes about three days to send back and forth. Once the patient's blood is returned, the compound is reintroduced to the patient. Although there has been a lot of controversy with the FDA and the clinical trials over the years, the most recent data shows that Provenge may prolong life for six months on average. Our hope is that I would be on the high end of the survival range. Given my health is otherwise good and I am relatively young, our intention is that my immune system would kick in and really attack the prostate cancer cells.

The site we are visiting will be one of the first three at which Dendreon is expanding the processing, once they receive final FDA approval.

I feel rather honored to have been asked to participate and am looking forward to the meeting tomorrow. I will be learning more about the clinical trials and new potential treatments as well, and will of course share my knowledge with all of you!

I also am looking forward to meeting a number of the 'virtual' friends I have come to know over the past five years!

March 10, 2010

Like Atlas

The news of late on one hand is weighing heavily on me, but on the other, we have been here before so I face the day with a smile and try to put the fear behind me. As we revisit this 'place' on our journey, I was recently reminded that Faith, Love and Hope are once again those attributes that we must lean on and call on to get through this period.

I try not to speak here as some sort of self-appointed expert on cancer. I just try to share what I know, what I feel about living with advanced, metastasized, hormone refractory Prostate Cancer. Right now it is the unknown that is most concerning. Fear is a particularly distracting emotion. It's there, right there below the surface, sometimes deeper than others. This will all be behind us once we make a decision. Next week I will either prepare to start a clinical trial or begin a new treatment. Time is of the essence.

If I start the new treatment we will know within a few weeks if it's working. However, what we will not know is how well and for how long. Another thing that concerns us (re: more fear) is if we pursue this treatment (DES), it will require radiation to my chest to avoid gynecomastia (think man boobs or 'moobs'). It's only a one time shot of radiation, but it's still radiation. We must focus on the fact that there have been a lot of good results with this treatment. That is encouraging.

If we decide to pursue a clinical trial, I'll have three more weeks when I have to remain off one aspect of my past treatment regime. This is sure to cause my PSA to go even higher. This thought is very concerning as well, again with the fear. The clinical trial is not looking too promising. We might even have a final answer later today. It is going to require some travel, but hopefully just three trips over a month's time.

It is my burden, but it's also hers and his. We will get through this together. So after a brief period of self pity and being somewhat consumed by the fear, I am moving on to more positive thoughts, feeling and attitudes. It's not the final round in this fight, more like the 10th and I just got knocked down, but not knocked out!

March 08, 2010

194 More Reasons to Hate Monday

Today we saw the oncologist to review my bone scan and the updated blood tests from Friday.
The results...worse!

My PSA climbed to 194.45 which equates to about a 20% increase within one weeks time.
The radiologist report indicated the bone scan was primarily stable. There were up ticks in existing areas, but no new tumors were identified.

The rise in PSA is very troubling and reinforces our decision that a change in treatment is required. As of tonight, I have stopped taking the Ketoconazole, in preparation for our next step. Next Monday, we will either start DES or select a trial location for Provenge. Our ability to pursue a Provenge clinical trial is dependent on us finding a location that is accepting new patients and logistically reasonable.

I'm not depressed, but just kind of bummed out at this point. I have a very busy week ahead so that will provide a lot of distraction, and leave me little time to ponder what lies ahead.

I remain pain free and even played disc golf yesterday for the first time in over a month. We'll get through this, as we always do.

At the risk of being repetitive, please join me in a prayer to Saint Peregrine.

Prayer to Saint Peregrine ~ Patron Saint to cancer patients

O great St. Peregrine,
you have been called "The Mighty,"
"The Wonder-Worker,"
because of the numerous miracles
which you have obtained from God
for those who have had recourse to you.

For so many years
you bore in your own flesh
this cancerous disease
that destroys the very fiber of our being,
and who had recourse
to the source of all grace
when the power of man could do no more.

You were favored with the vision of Jesus
coming down from His Cross
to heal your affliction.

Ask of God and Our Lady,
the cure of the sick whom we entrust to you.
(Pause here and silently recall the names of the sick for whom you are praying)

Aided in this way by your powerful intercession,
we shall sing to God,
now and for all eternity,
a song of gratitude
for His great goodness and mercy.

March 04, 2010

One Thousand Eight Hundred and Forty Six Days

Time for a post that is a bit more reflective, if I can muster the emotion, the strength, to dig deep and find the courage to share.

In one sense, the last five years are a blur. I can remember bits and pieces, but lately as I go back and review some of my early blog posts, I find myself emotionally drained. At times perhaps I suffer from a little bit of denial. I really don’t think this is a bad thing, the denial. What other choice do I have? Do I focus on this really lousy diagnosis? Not a chance, that's just not me.

On the other hand, during this review my mind is flooded with the memories, both good and bad, from the past five years. The memories are for the most part good ones. The human mind is a funny, tricky thing.

So today I'm driving to work, my drive is five miles, straight as an arrow south to north. As I leave our subdivision a small flock of ducks catches my eye. Like me they are headed north. I interpret this as a true sign of spring. As I cross each major intersection more and more birds join the flock. As a group they remain above me, growing and growing as we head north. By the time I reached my turn the flock must have reached a thousand. It was a good sign.

So you must be wondering where the heck I am going with this? The flock represented the Prostate Cancer community.We keep growing and growing, unfortunately. Like the interworkings of the flock, the lead bird is ever changing. There is no full time leader.

I know, a little deep, a bit silly, but sometimes I can be deep and silly!

March 02, 2010

Through the windshield

I always try to look forward, versus looking back and wondering and second guessing.I live my life looking through the windshield versus the rear view mirror.

So today we find ourselves at a cross roads, it's time for a decision and a change.My appointment yesterday with my Oncologist was a real kick in the teeth. It seems my PSA decided to take a rather unexpected leap. It rose from 103 to 158.9! Wow, where did that come from? I feel like I was blindsided.

At first I was pretty bummed out as you can imagine. We knew we were playing a little bit of Russian roulette when we decided to switch back to my current medications last fall. At first we had no idea if it would work at all and if it did how long it would last. We were looking for and received stability, we got it for almost six months. On a positive note it got us through the fall, the holidays, a number of birthdays and more. I believe it was the right thing for us to do at the time. I have no regrets.

That being said, we now move on. On Friday I'll have another full body bone scan. I was due anyway,but now the need is more pressing and the results may be more revealing. I'll also have another PSA just to make sure there were no lab errors, etc. I'm not expecting this to be the case, since this is the same lab I have been using for three years. With the results in hand we'll meet with Dr. V next Monday and decide the proverbial "what next"? At this point we are leaning towards starting DES, aka, estrogen supplements. At this point I'm not ready for another round of chemo. Additionally, my Alkaline Phosphate and Circulating Tumor Cell levels remain 'normal'. Additionally, the hip and leg pain I have been experiencing appears to related to some mild arthritis. Given this news and all of the test scores, we are focusing on getting my PSA level down. Using DES may be the best method for us to achieve this goal.

I'm not sure what else to share at this point in time. It's just another chapter in what has become my sardonic life.