My Neverland

This morning I watched 'Finding Neverland', the story of James Barrie who wrote Neverland (Peter Pan). Based on the crocodile tears, this one hit a wee bit close to home. I don't mind sharing that fact. Yes, I cry during a good, emotional movie. For those of you that have been around here for awhile, you know that I have been known to cry while reading a book! There was just something about the story, it is a great movie I would recommend to all.

Tears, and the emotions that bring them to life, are cleansing. To me they are a release for tension or stress and there are times in this battle when that release is critical. We have a lot ahead of us this August. It all begins in a few days with a trip to Boston. That trip will involve tests, waiting, meeting with the doctor, waiting and we hope, time for a little fun. This doctor appointment and clinical trial I am attempting to get into is perhaps THE most critical point in this journey.

With my PSA count remaining high and the increasing amount of pain I have been experiencing, it is very important that I change treatment plans now. Without this tria,l my alternative is chemotherapy and radiation. Since I did chemo back in 2008, I have the experience, it does not scare me. The issue is chemo did not provide much benefit. As for radiation, this would address the pain, but has it drawbacks. Those include compromising bone marrow and therefore making a chemo treatment less effective, fatigue, short term relief and more.

I just continue to pray this path I find my journey taking is the right one. Not because of the finanacial and travel impacts or the possible side effects, but because the trial offers so much more of a potential impact on the state of the disease than the chemo/radiation option.

I'll provide more details once we return from Boston.

Whoa, where did that come from??

I have to start this post with a recap of the Warrior Combine event. Although the video link in my previous post did a great job of recapping the event, there are of course a few things I would like to say.

First, I need to thank Jason for bringing this idea to me in June of 2010. If it weren't for Jason, the Warrior Combine event would have never have happened last year or this year.  Next, I need to thank the participants. The video only begins to capture what these guys put into this event. I am envious of their abilities! Next my appreciation goes out to the FLHW Board and the other volunteers, I tip my hat to you as well. I appreciate your generousity to our mission and withstanding the exceptionally warm morning of July 23rd.  Finally, to Fox4-KC and John Holt, I am sincerely grateful for the coverage we received! It is personally so important to me to reach out to the men of the community regarding the importance of being tested, and through the time we were given on Fox4 news this Saturday, I am confident that our message reached many!

Jason and I had big plans for this year's event and although twenty three participants is not huge, we nearly doubled the participation from last year. Additionally, the event raised over $2,000! Jason and I talked yesterday and both agreed, it's not just about raising money...the publicity we received was priceless. There is no telling how many men we impacted with the message.

It's not too late to help out. We still have a few shirts left (Sizes range from medium to XL and XXL) and we have Warrior hats available as well.  Pictures of both are on the order page, available at:
http://www.flhw.org/2011-events/105-warrior-combines.html
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Now to the title of this post. Sunday I began to experience a lot of pain in my lower back and left hip again. It was nearly identical to last month, only more intense. By yesterday and through Monday I was taking four Advil every four to five hours and taking several Percocet in order to sleep. Even with the meds, sleep was rough. The good news is last night I slept much better and as of now, I haven't taken anything in over eight hours.

This is very similar to what happened after I saw the doctor in June. Five days after the appointment and injections, I experienced back and leg pain. Again, this month it was much more severe, but I really think I  have turned the corner!

Warrior Combine video

Here is some of the video coverage we got on Saturday!
Details and my thoughts to follow!

 

When good isn't good enough, then you get more

Tuesday was my four week check up with my Oncologist, along with the usual blood tests and shots. The appointment was uneventful for the most part, the doctor was away and we saw the Physician’s Assistant. She is great, but no decisions were obviously made with the doctor away, this was all expected from the last appointment.

Last month I switched a few drugs around; I stopped Lupron and started Firmagon (testosterone blockade), stopped Zometa and started Xgeva (bone strengthener). After making these changes four weeks ago I did have mild to moderate pain a few times during the weeks that followed. As almost always happens, the week leading up to the doctor’s appointment was as close to normal as I’ve had in a while. I felt great and remain that way this week as well. The side effects from the Firmagon shot (tenderness, redness and slight swelling at the injection site) seem to be much less than June. Or maybe I am just more tolerant this time around.

The exciting news is my PSA was actually down to 421 (it was 433 the month before). Though this is somewhat good news, the drug I started back in January (Zytiga / Abiraterone) is not having the impact we had hoped. However, I am very grateful for the result. An additional marker we track closely is Alkaline Phosphatase. Normal levels are approximately 40-110, mine had been between 50 and 60 for years. With the rise in my PSA this year, the AlkPhos has also gone up. According to one specialist my type of prostate cancer is creating PSA primarily via the bone tumors. Hence, my need to find a treatment that targets bone.

Speaking of treatments that target bone, yesterday we received a call from the doctor’s office in Boston. Without looking too far ahead, it was good news and we now have an appointment with the doctor leading the trial the first week of August. We are cautiously optimistic as there is not a guarantee that I will qualify for the XL-184 trial the purpose of this meeting is to determine if I am eligible. The appointment will include a blood test, a bone scan, CT scan and exam by the doctor.  Although I appear to be an ideal candidate on paper, things can always pop up. Once again, we are cautiously optimistic!

Assuming that the tests and the appointment go well, I will have to return 4 weeks later to start the trail. The delay is where this gets a little risky. I will have to stop taking a number of medications for those four weeks. This includes:

- Zytiga (Abiraterone) and Prednisone (the current hormone blockade I have been on since January)

- Lovenox (a blood thinner I have been on since last fall when I was on DES and had several clots in my leg)

- Finisteride (I have been on this drug for almost 5 years, the short story is it blocks a form of testosterone)

Stopping the blood thinner is the least risky in my mind. The clots I developed on two separate occasions can be attributed to my treatments at the time, one being Taxotere and one being DES. I have been off DES since December.  As a precaution, Dr. V suggested I add a low dose aspirin to my daily regimen. Finisteride is also a minor risk since my testosterone level is always extremely low. Zytiga is the big risk but the potential of this new drug is so great that it is a risk I am willing to take.

So if the crazy schedule of ours wasn’t busy enough, now we add a trip to Boston the mix!

Plans make a bitter pill

I guess a little medical update might be appropriate right about now...

I'll start with what I 'know' instinctively based on how I am feeling and sense what is going on inside me. First, I have several swollen lymph nodes on the left side of my neck, where the neck and shoulder meet. These showed up in my last CT scan (December). They have increased in size, I can feel them but they don't bother me. If they became a problem surgery or radiation are options, but they are not a problem at this point. My guess or instinct tells me there are a few others in my abdomen that have increased in size. This is soley based on the occasional ache and pain that comes and goes is my lower abdomen/lower rear ribs.

I have a similar feeling regarding my bone mets or tumors. I know the next scans are very likely to show either growth in existing areas or new areas altogether. As much as my PSA has gone up over tyhe past six months and the inability to start a new treatment protocal, I believe these concerns are almost guaranteed.

So what lies ahead? What are we doing about it? First in order to remain sane and functional, we have to remain both calm and hopeful.

On Friday, July 1st, Mary spoke to the clinical trial nurse in Boston. Here is what we know right now. At the end of July we tentatively should get the green light to go to Boston four weeks later. At that time I will have several additional tests to confirm I am eligible for the trial. If I am, I would begin taking the medication (oral) at that time. I would then have to return to Boston every three weeks for four more visits. After that the appointment frequency would change to to 6 week intervals.

So four weeks of uncertainty, followed by four weeks of 'terror' and follow that up with a lot of travel time.
Having a new treatment that results in less pain and better PSA scores will make it all worth it!

No time to slow down

After spending the start of last week in Chicago, I looked at our calendar and July is packed with plans. Every weekend through the end of the month finds us busy, busy!

Between parties, dinners, visits with family, celebrating a friend's 40th and an event for our charity, and the highlight....closing the month with Kenny Chesney and an out of town visit from a of friend and fellow PCa survivor.

The first week in August is our 20th wedding anniversary, then two weeks later school will be starting. It might as well be late August!

I'm sure the following thought has been penned in a more eloquent fashion, but right now I find myself living as such.... Don't wait for the moments in life to happen, make them happen!

Would someone stop the carousel and remind me I'm in the midst of a little crisis! On second thought, don't bother, the ride is a blast!

Beautiful Day!

I really don't fear my emotions, I embrace them for the most part. However, there are times when they conflict and times when they surface at the wrong place and time.

Right after this picture was taken, right in the midst of the U2 concert, I was briefly struck with a tremendous amount of emotion. I fought it back but it was difficult. I was both happy and anxious.

My joy was the obvious culmination of nearly eighteen months of waiting for the moment to actually happen. The concert was cancelled last summer so we had to wait. In those eighteen months, a lot has happened with me and my battle, and there we were, finally.

At the same time I knew at that moment he and I were making memories. For him there are aspects of that night and the previous day that will last him many, many years, perhaps a lifetime.

For me those two days will also last a life time, but in all likelihood, a more abbreviated one. For you, the reader, this thought might be hard to understand. You might even be questioning, Was he really thinking that, in the middle of the concert?

My eminent demise is a thought that is always there lurking slightly below the surface. I'm a rather seasoned expert of keeping the thought and accompanying emotion at bay, but there it was, and there it remains. It's the elephant in the room around here. I talk about it only occasionally, but think about it often.

So why in the world would I quote the U2 song in the title of this blog and then go on to write a rather striking if not depressing entry? First, because I try to share nearly everything. Secondly, and much more importantly, to show you and those that find this blog next week, next year and so on, that it's ok to have these thoughts and experiences as long as you can keep them in perspective before returning to hope.

'Hope', that which gets us through this and every 'Beautiful Day'.

It was a beautiful day
Don't let it get away
Beautiful day 

Peace be with you all.

You too!

I don't like the term 'bucket list'. It infers that ultimately there is an end. I prefer to focus on what to do in the present.I'm not saying I don't have a list, as a matter of fact I posted a list here years back that I should probably review.

With this in mind, I spent my the last two days in Chicago with a dear friend. We were there to see the band U2 in concert at Soldier Field. This was my first time seeing this band in concert and they didn't disappoint, it was great! The stage cannot be explained, it is enormous! For those of you who are not fans I'll just say this, U2 is one of the few bands that after having been together for over 30 years you can sense that they enjoy what they are doing and more importantly, enjoy being with each other and being a band. Short of providing the set list, I'll just say it was a splendid mix of new and old.

One of the best parts of the trip was the fact that we never went to the miracle mile/Michigan Ave. I say that because of the dozens of times I have been to downtown Chicago, I have always stayed in and around Michigan Ave. This time we stayed one night at a friend's place up near Wrigleyville and last night at another friend's place in Old Town. I appreciated both their hospitality and the exposure I had to a new part of Chicago, truly a new experience for me.

We rode the El, took a few cabs and walked, a LOT! I would guess we walked 10+ miles yesterday alone and for me, I loved every step of the adventure! We ate great food, enjoyed cold beverages, met new friends, laughed, talked and generally soaked up the beauty of the windy city.

I'm trying to figure out how to get to St. Louis to see the band perform once again on July 17th!!

What does it all mean?

In regards to the video link I referenced two posts ago, Dr. Myers recommended a book titled, 'Man's Search for Meaning' by Viktor Frankl. The book is divided into two sections. The first is Frankl's recollection of his time spent in concentration camps during WW II. The second part is his reflection on life and man's search for finding the meaning of it all. It is wonderful.

There are a number of quotes that I love from the book. The first one I would like to share is this: He who has a 'why' to live for can bear almost any 'how'. - Nietzsche

So then I receive an email from my friend in Australia. In my last response to him I let him know that he is becoming my go to resource when I am having 'blogger's block'.

Here is the home run from his most recent email:

There seems to be something of a pattern for me to the cycle of cancer: Shock, Adjustment and then Acceptance (and the ability to live with an acceptance of finality). It can be liberating too (don't ask me to explain that!)  I've now been on that roundabout a few times and I know that you and others have been through the cycle many more times.  When I first started reading your blogs, I had some difficulty in understanding your coping mechanisms. I think I now understand.

I occasionally have dark thoughts but now I understand the cycle, I sort of know that my emotions will stabilize and I will be able to deal with that new reality but as you'll fully appreciate, while that's an intellectual understanding, the emotional dimension is not so easy until I have progressed to acceptance.  It's different each time. 

I am so thankful for people like him. It may be fate, or it may just be fortunate timing. Whatever it is, I truly couldn't say this any better!