March 28, 2012

My friend T

A friend posted this in his blog the other day.

"Be sure to listen to the's like God is playing symphony just for you. I think you'll find a variety of simple pleasures in it to help you through this".

He's a fellow PCa warrior in Seattle! Fight on T, prayers are with you!

March 24, 2012

From an unexpected source

There’s a light at the end of the tunnel;
though, it seems to be fading fast.
And my eyes are fatigued and blurring
. . . yet, my faith tells me I will last.

There’s a train sounding off in the distance;
though, it’s barely a whisper,now.
And my hearing is not what it used to be
. . . yet, I know that it’s there, somehow.

There’s a mountain that looms before me;
there’s a storm driving at my back;
and a river that rages beneath my feet
. . . yet, I’ll weather the worst attack.

For, my spirit will not diminish,
nor my confidence ever grow weak.
I have hope, I have faith and the gift of love
and a world full of dreams to seek.

Wild Willy
I received this poem the other day from a friend, one I would least expect to send a poem.
However, he couldn't have read my situation any better. The words hit so close to home.
Thanks, this was really special.

March 18, 2012

The four horseman

The 'four horseman' as I've come to call them (fatigue, no appetite, nausea and diarrhea) have reared their ugly heads again over the past week. The appetite is most concerning because when you have no desire to eat, forcing yourself is not an option. The result is I have lost another 5 pounds and at times I am having a hard time finding anything I can eat. Bless my wife for her patience, this is very difficult and stressful on her.

I am going to keep on fighting, at least through my April appointment in Boston. After that we will have to see what options are available and if continuing the trial is still manageable.

There is however a fellow participant in the XL-184 trial that has decided to end his participation. Though his overall bone tumors were significantly less than mine, his scans never showed a real decrease or reaction to the medication. His last scans actually showed a slight increase in tumor size. The results of the scans, coupled with impact of the four horseman on him personally have forced him to seek other treatments.

Like I mentioned, I too might join him come April, we'll see how things go.

March 14, 2012

Same ol' song and dance, my friends

Last week I made my scheduled trip to Boston. I departed Kansas City with a forecast calling for 70 degrees and landed in Boston to a chilly 27 degrees. It was just someone’s way of reminding me that it’s not quite spring!
This trip to Boston did not include scans, so it was a roundtrip, one day schedule.  The meeting with the doctor was quick but full of good news.  He had the official Radiologist report from the pharmaceutical company (Exelixis) and they reported the when comparing my baseline scans from August to my most recent scans from late January, the overall reduction in my bone tumors was 95%! Seriously! So refreshing to receive good news! Although managing the side effects of this treatment have been a challenge and definitely impacted our quality of life, we know that ultimately the treatment is combatting the cancer, so it is all good.
This means for now, we just keep headed down this path to see how long we can make this last. For now, I won't return until mid-April and with that appointment I will have scans again. As long as we see at least stability on those scans, we move forward.

The rest of  the week was up and down emotionally. Our young friend passed away, the funeral was wonderful, but I could not talk to her husband. When I opened my mouth, I just wanted to cry. He said he felt the same way. Fortunatley Mary was there to keep it together. We continue to pray for him and his young son, who is truly an awesome young man.
In additional to that, we continue to pray for one of the long time contributors to the 'advancedprostatecancer' group at Yahoo Groups. I mentioned John A. here in my last post. He had a bad few days, but is still going strong.

Thursday night my brother Doug called and asked if he and his wife could come up to visit. It was fun! We watched a lot of college basketball, cooked and ate too much! So enjoyed their company!

The weather this week is calling for over seventy degrees every day! After work walks with Mary will be in order every evening! It is enlightening to have Spring at our door!

March 05, 2012

What's on my mind lately

A few posts ago I asked you to add our friend and former neighbor Jennifer to your prayers. After fighting to the very end, Jennifer went home to heaven today. Things took a turn for the worse last week and this news leaves me very sad for her husband and young son. They are all so young, she was always so happy. Life is unfair sometimes, this is definitely one of those times!

Mary picked up on this the other day and asked if I was internalizing what Jennifer and her family were going through. I answered no, but Jennifer's difficult journey with cancer along with a few others recently have weighed heavy on my heart. The other two situations that have contributed to my solemn mood are from two gentlemen who are participants on the prostate cancer message boards that I follow. The men are in very late stage, they no longer receive treatment, and choose to spend their remaining days at home with their families while receiving hospice care.  

One man in particular, John A, is sharing his final days in very specific detail. It’s insightful, fascinating, and so eye opening I hang on every written word. I hope you don’t interpret this as morbid. What John writes is beautiful, along with educational. He shares it with those of us that will follow his path someday. I’ve gone over this from time to time the last few years, but without the type of detail John is providing. I just expected a long drawn out painful end in a hospital bed. However, the insight John has provided has completely changed my thoughts on how this whole thing winds down.  It’s with the grace and the caring hands of a certain someone along with those from a good hospice. Additionally, and more importantly, it’s at home, surrounded by friends, family and love.

Please, please don’t interpret this as me throwing in the towel, I’m far from there, there’s a hell of a lot of fight left in me. I just shared this today because it obviously has been on my mind a lot. With the onset of spring I can feel things changing, mostly my mood. I need to get out more and walk. I can’t wait to sleep with the windows open. I anticipate flowers blooming and the trees with leaves. As I say every year at this time, spring is my favorite season.
A brief update on my last post, I’m almost 100% certain the monthly aches and pains are a side effect of the two monthly shots. More specifically, I believe the Xgeva (bone strengthener) is the culprit. It started over the weekend and last night I needed Advil and the heating pad to sleep. Today is better and I hope this only lasts a few days instead of lasting a week like it did last month.