Piling on.

Last week was one filled with nothing but crappy news!

First it was my PSA increase on Monday (up to 430). It’s just a number and overall I am more focused on the other aspects of the disease like pain.  While things seemed to be better over last weekend, by Wednesday my back reminded me that even when I feel good, I need to just chill out for awhile. That continues to be a struggle for me, I cannot be idle. I have been taking 4 Advil every 8-10 hours in order to function.

Last week we took one of our favorite books (‘There’s No Place Like Hope’) over to a neighbor who was about to have surgery to remove her colon. Wednesday was the surgery and it turns out things were worse than expected and the cancer had already spread. They scrapped the surgery and now she will start intense chemotherapy. They are younger than us but also have an ‘only’ (single child). I ask that you add them to your prayers and/or thoughts. They have a long, tough road ahead of them but their positive attitude is both infectious and admirable.
To the ‘C’ family, this one’s for you:

Oh great Saint Peregrine, you who have been called "The Mighty" and "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 these sick persons whom we entrust to you.

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. Amen.

Just like me

Though not a patient, I have long been a follower of Dr. Charles (Snuffy) Myers. As both a PCa survivor and a physician he has a unique perspective on this disease.

In the last year he started posting video blogs every 1-2 weeks. His latest is available at the link below and it is amazing how comparable his thoughts and points of view are with those I shared during the presentations I gave in March and again in May. As a matter of fact, if I didn’t know better, I'd swear he reviewed my notes!  That is clearly a joke!

Dr. Myers mentions the following in this video about ‘the will to live’:

The importance of resiliency or the desire and will to go on is primarily made up of:

o   A reason to want to live, to go on

o   Religion, particularly a pro-life religion (I was most surprised by this comment)

o   Family; a loving supportive spouse, children and grandchildren, etc.

o   Support groups; face to face or on-line

o   Something in your life that fills you with euphoria (he mentions hiking, for me it’s got to be disc golf)

o   Preserving reasonable hope and the fact that median survival statistics are for the most part useless.

I encourage you to go watch the video.

http://askdrmyers.wordpress.com/2011/06/22/pca-the-will-to-live/

Old Reliable

Aside from the obvious list of supporters;  Mary, Brad, family, friends, etc, there is one more person that has consistently been with me through this journey.

I was already a fan when I was diagnosed, but right around that same time I acquired the album, 'Songs from the Old Blue Chair'. At the time I was working in downtown Kansas City and had a forty-five minute commute twice a day. Everyday there he was with his songs about Boston, pirates, sailors, beaches and more. The songs and the album became my escape from the reality that was crushing me emotionally and weighing on my physically.

In no way would I ever claim to be his biggest fan or proclaim that I know every word to every one of his songs. As I type this entry the song 'Boston' just came on my iPod. As I sit on this airplane, taking my last of nine flights to Atlanta, I am really struggling not to cry. This song, if there was 'a' song, is the song that best encapsulates the last six and a half years of my life. The song is basically about a girl who left everything in Boston to embrace the island life. If you are a long time reader you know my love of the beach, the sand, sailing, etc. I want that life. To leave everything and take Mary and Brad and leave cancer and life behind. To basically re-live the week I just spent on Anna Maria Island.  Coffee on the patio listening to the surf, mornings by the pool, walks on the beach, fresh seafood daily and a carefree, laid back life of little to no worries. It's a dream I would hope to fulfill someday.

Thank you Kenny Chesney for your beautiful music and for providing the momentary escape from the reality that has become my life.

~~~~~

Is it just me or do you also see the irony that the location I am most likely headed for my next clinical trial is Boston? Hmm? Maybe nothing, but maybe fate is stepping it up a notch.

(footnote - the tears won, I couldn't completely fight them off. They were happy ones!)

Not knowing might be a good thing. Then again....

From half a world away, a quote that so succinctly captures my mental state, I had to include it in today's post.

I have been exchanging emails with Ivan from Australia and in his most recent communication he stated the following:

“I sometimes find myself caught between wanting to know everything and wanting to know nothing.  It's a confusing place!” 

It’s almost like he read my mind.  For those of you not battling cancer, the beauty of this quote may not be clear, but for me this is perfect. At times I think I want to know what is going to happen, when it's going to happen, etc. On the other hand, perhaps I'm better off not knowing the details and the timeline.

~~~~~~~~

Yesterday was my last trip to Atlanta. The Oncologist's office had asked a few weeks ago if I could see the doctor one more time to 'close out' the trial I had participated in for Zytiga (Abiraterone).  I agreed and looked forward to the appointment as an opportunity to talk with the doctor one last time, as he was not in the office for my last visit. He started off by stroking my ego a bit. Apparently the doctor I met with last time  (his partner) made rather complimentary notes that I was an exceptionally informed PCa patient.  He said something about not having seen a patient like me in a long time. (I am hoping he meant that in a positive way!) Then there were additional notes about my good looks and handsome off spring, as Brad was with me last month.  JK!!

We talked for twenty minutes or more. He was in agreement with our plan to pursue XL-184. He also said we should keep our eye on MDV 3100, and if we need to consider chemo, there are several options. In closing I must reiterate that if I lived in Atlanta, or the region, I would see this doctor without hesitation! Although I have not responded to the treatment as we had hoped, the experience participating in this clinical trial has been a good one.

For Jimmy R

Earlier this year, probably in the March timeframe, I received a request for several of our FLHW silicon bracelets. Through a series of emails I discovered I was sending these to the sister of a man my age, also battling advanced prostate cancer.

Last week I received an email update from her that Jimmy had passed. There are many reasons this news upsets me, but the part that hurts me the most is the fact that he left a wife and three teenage children.

Are you starting to hate this disease as much as I do?

Jimmy’s sister told me that as an educator he was known to provide students a “Golden Starfish” pin. She sent one to me and below is the poem that accompanies each pin.
____________________________________________

The Starfish Story
While walking along a beach, an elderly gentleman saw someone in the distance leaning down, picking something up and throwing it back into the ocean.

As he got closer, he noticed that the figure was that of a young man, picking up starfish one by one and tossing each one gently back into the water.

The old man smiled, and said, "I must ask, then, why are you throwing starfish into the ocean?"

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the elderly observer commented, "But young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

The young man listened politely. Then he bent down, picked up another starfish, threw it back into the ocean past the breaking waves and said, "It made a difference for that one."
____________________________________________

Bless you Kathy and Jimmy’s entire extended family.

Great insight on Cabozantinib (XL 184)

There is a flurry of XL 184 information circulating after last week’s ASCO conference in Chicago. This link to MedPageToday includes a brief video interview with Dr. Maha Hussain, University of Michigan.

http://www.medpagetoday.com/MeetingCoverage/ASCO/26962

On a personal note, this is the drug that we are pursuing for my next treatment. There are currently open Phase I and Phase II trials, though neither are available in Kansas City.

The Phase II trial is recruiting in multiple locations, it looks like Las Vegas might be the best option for me. The Phase I trial is only available in Boston and though it is currently full, they will likely recruit 11 additional patients to expand the trial in late July. My Oncologists’ office is currently helping us determine if I qualify for either trial. Stay tuned!

If this doesn’t pan out, and because I am not responding to the Zytiga, my other option will likely be Taxotere, i.e. chemotherapy. If we do go down this path I will discuss using Taxotere in combination with some other drug in an off label or experimental basis. I'm not sure if there is anything available, or if this even makes sense, but we will be discussing these options with my Oncologist.

I have thought about Provenge but becasue it does not immediatley have an impact on PSA, it is not a path I am ready to pursue. 

Overall my health remains stable. I continue to have a few minor aches and pains from time to time but it is easily alleviated with a few Advil. 

My thoughts and prayers are currently with Terence in Seattle and Brian in New Zealand. I ask that you send your prayers and/or positive thoughts their way as well.

I didn't get here alone

One of the positives about this whole experience, yes there are a few, are all the new friendships I've made during this journey. There is Jason, who because of someone wearing one of our golf hats, contacted me about his 'Warrior Combines' event. Although we've only known each other for a little over a year, I feel as if I've known him all my life. There are also a number of online friends that I have not had the opportunity to meet in person, but I know they are as close as the keyboard, of if needed, just a phone call away.

Another relatively new friendship that I am blessed with is with a fellow PC survivor named John. John is down to earth, honest, funny and just an all around good guy.  He is a local news anchor here in KC.  He provides me with inspiriation, as well as confidence to beat this menacing disease. The background on how we met and the story of our friendship was recently captured in a magazine article in a local publication "435 South".  http://www.flhw.org/in-the-press/40-print/113-qthe-buddy-systemq.html. The writer did a great job of capturing our stories and promoting our message of the importance to go get tested. 

Here is one of the pictures that didn't make the cut... I like it better than the one they did use!

My relationship with Jason, John, and so many other friends, both new and old, that I've shared my journey with over these past six years, reminds me of the Kenny Chesney song, 'I didn't get here alone':

I didn't get here alone
That road's just too rough and long
I might be the one the spotlight's on
But, I didn't get here alone
Yeah, I know I didn't get here alone

Hit me with your best shot.

On the Thursday (May 19th) before my last trip to Atlanta, and vacation in Florida, I had my monthly appointment with my local Oncologist.

My PSA was 383, UP considerably from April. This was followed by a PSA in Atlanta that was up considerably as well (I’ll post historic numbers in a later entry).

This was not the news we were looking for and in all likelihood means Zytiga (Abiraterone) is not working. Though the Oncologist's office in Atlanta was able to get me transitioned from the trial to receiving the drug via prescription, it was a poor consolation prize.  In order to close out the trial I will have to return to Atlanta one more time in mid-June and because I had already purchased the tickets this is no real burden.

What lies ahead is either another clinical trial or chemotherapy. Having been through chemo before this does not scare me since I tolerated it so well. What does concern me is the fact I did not have very good results from chemo back in 2008. The clinical trial would require considerable travel to Boston; every three weeks for the first 5 treatments and then every 6 weeks. While I was frolicking in the sun last week, Mary spoke with the study nurse and now we are waiting for a call back to proceed with the process of qualifying for the trial. The drug, XL 184 (targets the cancer tumors in the bone) has shown unprecedented results in previous trials and I pray that I can get into the trial as soon as possible.

 

On another note, the Prostate Cancer community lost another of our brethren last week when Walt, a gentleman from Alabama passed away. I didn’t know him well, although we did exchange several emails from time to time. I am saddened and pray for his wife and family.

I dedicate this prayer to Walt and his family....

Hail Mary, full of grace, the Lord is with thee; blessed art thou amongst women, and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen

A voice from the past

Back in 2008 we lost a member of the PCa community, Rick S from Houston.  I wrote about it here.

Last week I received a message, via the FLHW Facebook page (click here). Though her name was not immediately familiar, after I watched her video, it all became clear. The video is on Facebook and therefore  requires you to have a Facebook account to view it. I am trying to find a copy on YouTube and will add it to this post if I am able to locate it.  Video on Facebook

It is a wonderful video and a tribute to a man I only briefly knew, but one who was taken too early.
Thank you Stacey. Your message and video touched me at a time I needed a good swift kick in the 'Faith'!

.... for a reason.

Ever since I've known Mary (25+ years) she always has used the expression, "Everything happens for a reason".

While we were at the beach we spent a lot of time looking for sea shells. One afternoon Brad walked up to the north end of Anna Maria Island and while looking for shells he lost his blue silicon FLHW bracelet.

Then, on Tuesday while we were at Busch Gardens I received the following email:

As I was strolling along the beach at sunrise this morning on the north end of Anna Maria Island in Florida...I noticed a blue bracelet at the edge of the sea...just sitting there mixed in with all the beautiful shell shades....so I picked it up and read Faith Love Hope Win www.flhw.org.

Upon returning home I went to your website and I am still dazed and amazed at what I found. My husband passed to heaven 20 years ago...he was 42...our daughters were 5 and 8 at the time....he had prostate cancer. Not quite sure yet what his message is to me here... just thought I would share this with you. In light, LM

I hope your reaction was like mine. WOW! A coincidence? Perhaps it was, but I believe it was something more. For her? For me? I'm not sure and I may never figure it out. Anyone could have found the bracelet, but it ends up in her hands and with her story it had to happen for a reason.


I met her on the beach one morning and we walked (a long way!) and talked, and talked and talked. She told me about her husband and daughters and I told her about Mary and Brad. It was probably the fastest 90 minutes I have experienced in a long time. The discussion was fascinating, enlightening and touching.

Reflecting a few days later I am left with the thought of how much she still misses him twenty years later. I was also left with the thought that perhaps I had just met Mary, twenty years from now?