April 28, 2005

I am not alone.....

I have received many comments both in person and in email regarding how strong I am being. At the same time I also get the rhetorical question "I don't know how you do it'. To be honest, I am not sure? The best analogy is the proverbial fork in the road....go one way and let this consume me, take the other road and fight, remain positive and find the path to winning. The choice was easy, the journey is not.

Though a lot of the battle is in my heart, my soul, my mind I would be struggling to win the battle without those of you who read this and provide support to Mary and me. It is with that thought that I submit this for your review, it is from the inaugural Mass of Pope Benedict XVI.

“And now at this moment, weak servant of God that I am, I must assume this enormous task, which truly exceeds all human capacity. How can I do this?…All of you, dear friends, have just invoked the entire host of saints, represented by some of the great names in the history of God’s dealing with mankind. In this way, I too can say with renewed conviction: I am not alone. I do not have to carry alone what in truth I could never carry alone. All the saints of God are there to protect me, to sustain me and to carry me. And your prayers, my dear friends, your indulgence, your love, your faith and your hope accompany me.”

Words mean things.....it's funny, maybe ironic, maybe some fate mixed in there? Those three words keep surfacing "Faith, Love and Hope".....

I met with an attorney today and began the process of establishing an official non-profit (501.3c). Once the application is submitted all donations are tax deductible. The application will be filed in about 7-10 days and IRS approval takes 60-90 days. Next steps are for me to put together a board of directors and continue the work on the website (www.flhw.org). Stay tuned for big things.....I truly believe this is the "why".

April 25, 2005

"The" Smoothie (UPDATED 1-12-07)

In addition to mentioning it here, I've told many of you about my daily breakfast smoothie....
well...here is the recipe, (but being me, I have to add a few comments first!).
- this is extremely easy to make, it only takes a minute
- it is VERY filling, in fact it is all I have until lunch
- it does require a little prep work - buying and slicing strawberries, making sure you have all the ingredients in the house and peeling the bananas and having them stored in the freezer so they are frozen when you are ready to make your smoothie.
A frozen peeled banana will last for a long time and sliced, refrigerated strawberries for 5-6 days depending on how ripe they are when sliced. The flax seed oil is optional, we add it because we cut red meat out of our diet and this adds back protein and a few other key nutrients.

6 T Dannon no fat vanilla or strawberry yogurt
1 cup blueberries
1 cup sliced strawberries
8 ounces pomegranate juice
2 Scoops of powdered Iso-Soy (Vanilla)
1 frozen banana

1. Put strawberries and blueberries in blender
2. Add yogurt, Iso-Soy and juice
3. Blend on low setting for 30 - 40 seconds
4. While blending, cut frozen banana into small pieces and add through the top of the lid. (Speaking from experience, if you remove the entire lid while blending, you have a smoothie clean up project in the kitchen!)
5. After all banana pieces are added, switch setting to high for 30 seconds.Enjoy!!!!!

aprox 20oz
Calories 456, Carbs 81, Fat 5.8, Fiber 21.6, Protein 41.9

April 22, 2005

It gets better.....

We turned a corner over the past 48 hours....

1) We realized and agree that things are no worse off than before we went to Houston. Yes, it is hard but we vow to take this a day at a time, go step by step (insert in your own cliché here), etc.

2) I had an interview today and another on Monday, YEAH!

3) Insurance again, is not an issue. Everything will switch over to Mary's coverage on May 1st. I spoke with them yesterday and referrals etc are taken care of and we are set to go.

4) We met with my urologist (Dr. Brad Davis) today. I have spoke of him in past entries, I can not say enough about him. He and his nurse (Mel) are truly remarkable caregivers! I feel blessed that I was referred to their care. Dr. Davis agreed with our decision to leave Houston and not participate in the study. He is pleased with the progress of the current treatment and was optimistic that we are on the right path. (By the way, Lance Armstrong walked out of MD Anderson - I am sure it is a fine institution and it's reputation is impeccable, just no "Love Connection" for us). Dr. Davis instills a lot of hope in both of us. We realize that this is the mother of all battles, but he just leaves us feeling confident that we will make it, we can "WIN" with Faith, Love and Hope (good meds, strict diet and consisten exercise regimen. He again said we could go years and years (3, 7, ...?) on this medication and new disoveries are made daily. You just never know!

5) I have an appointment on May 2nd with the general oncologist that Dr. Davis had recommended. Just an initial consultation to make sure he too agrees with our battle plan.

6) The night before last Brad had a nightmare, something that rarely happens with him. Last night he was acting a little abnormal, just kind of moody. When Mary asked him what was the matter he broke down in tears and said "Dad could die!". After she calmed him down he was much better. He was much better today and had the day off school. I took him with me to the barber shop and on the way home we broke the law and I let him ride in the front seat. I asked him about last night and we talked about what was going on. I told him that first he didn't need to worry about something happening to me immediately. I assured him it would be years before (and if) things got worse. Also, when they did get worse, that is when I would need the "tough medicine". After the "tough medicine", it "could" be several more years. I also explained that in all that time there could be a doctor or scientist that discovers something to make me better. His reply was, and this is classic Brad, "So it could be 10 years from now?", I told him that was possible as long as I take my medicine, eat right, exercise and we all keep praying. He said "10 years", I'll be out of high school and be living in Texas, that's fine!" (it's a long story about moving to Texas...) Anyway, I haven't laughed so hard in quite a while....classic Bradley!

So...the weekend is here, it's a movie tonight (Oceans 12), disc golf at 7:30am, more painting (almost done), two soccer games tomorrow and one on Sunday, Mass, mow the grass, clean the carpets......just a "normal" weekend!

[New Music on the iPod] Keb Mo - Slowdown. I've actually owned this for about 4 years, great blues album. Not in the classic blues sense, more along the lines of Robert Cray etc.

Enjoy - Peace be with all of you!

April 20, 2005

Finding strength in midst of chaos....

The sun did come up today......

I dropped Brad at school and then stayed for Mass. It was unbelievably difficult to restrain myself from losing it right there in the pew.
Something Fr. Bill said that hit close to home (paraphrasing)..... "Love is the satisfaction you feel when you help someone else". Though not always forefront in my thoughts and actions, in my adult life this is what I have tried to do most of the time. Now I need help from others, doctors, researchers and a cure that doesn't exist today.....in the mean time I pray for the strength to get through each day as chaos swirls around me.

At the end of Mass the kids always sing a song and use their arms to act out the words....I couldn't look at Brad, I can’t really think about it now without crying......

I spoke with Fr. Bill briefly after Mass and brought him up to speed on Houston, and then I mentioned the job situation. His response was "Oh my God!". I guess when you’re your Priest mentions the Lord by name, things are pretty bad!

Don't let the commercials fools you, Monster.com and other internet jobs sites are not a good place to find a job, at least not in Kansas City.

Have you ever heard Diana Krall's rendition of Billy Joel's "Just The Way You Are"? It's intriguing how music effects you differently in different situations, times, moods etc.. I want to remember everything I have learned and everything I have felt over the past two months, but turn the clock back to before I was diagnosed or better yet rid my body of this filth.... and keep things just they way they are....

St. Peregrine is the patron saint of cancer patients. His feast day is coming up, May 1st.

Prayer to Saint Peregrine

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. Amen.

April 19, 2005

Houston, we have a problem....

We returned home Monday night...no, this is not good news.

At this point in time, there is no cure for Prostate Cancer that has metasticized to the bone. It's not good, there is not much else to say, details of the trip are below.

Maybe I put too much hope in going down there? My expectations were too high? I'm not sure what I was expecting, good news? A cure? Regardless of what I wanted, what I got was devastating at best. The bottom line is this - there is no cure (at this time).

From Houston:
After what seemed to be a million forms, we went in to see Dr. Mathew at about 9:15. We spoke with his nurse, and he finally came in at 9:45 or so. We talked, he reviewed the x-rays and CAT Scan results I had taken in KC in early February. The CAT scan did not reveal anything new but the bone scan clarified where the cancer had spread. Though it is not in my knees, it is in my hips, pelvis, neck and throughout my spine.
The lab at Anderson modified my Gleason score (indication of how advanced the cancer is in the tumor) from a 7 and 8 to a 7 and 7. (1 being a normal cell, 10 being the most advanced cancer possible.)

After this, then he laid out the options;

Option 1: Countinue the medication I am on and add one additional medicine to fight the bone issues and possible onset of osteoperosis......and wait. Wait until a time when my PSA score begins to increase. The PSA will eventually begin to rise when the cancer finds a way around the hormone blocker. It could be 2,3,4 years or more. At that point the cancer will begin to grow in spite of the drugs. At that time a decision will be made as to the most effective drug protocal to pursue, either chemo, experimental or a combination. Once again, this is not expected to result in a cure, it is hopeful it will extend my lifespan and maintain a good quality of life.

Option 2: MD Anderson is conducting a study in which the second treatment I mentioned above is started earlier in the timeline. The study combines two additional FDA appproved radiation/chemo treaments. It is "hoped" that this will show improvment in duration of life. I could go on more, but the bottom line is that with this option I would compromise my current quality of life, suffer physically, and quite possibly emotionally. Additionally, I would be required to travel to Houston monthly, and in the short term, with very little evidence (in fact virtually no evidence) that it would be beneficial to me personally. (The release form for the study iterlly states "you are highly likely to see no improvements in your condition").

The issue is this, as I understand it, with cancers like Leukemia, or tumor based cancer, chemo can be administered and it will basically travel through the blood stream to the marrow or tumor and attack the cancer. In this case Prostate Cancer that has metasticized to the bone is different. Blood does not travel through the exterior of the bone and in the joint, so chemo has very little effect on the areas infected.

It did not take us long to chose, we chose #1.
If they had offered a new experimental drug that had shown some signs of hope we might have taken a gamble, but in this case there was very little hope of benefit to me and my condition. That might be selfish, but the impact to our quality of life would have been immediate. We believe it will be better to continue on our current path and deal with chemo (or chemo like treament) in a few years. Who knows, maybe there will be something else available at that time? The Doctor was very impressed with our dedication to better diet/nutrition and commitment to exercise. We are hopeful that this will have an additional positive impact to my ability to fight this cancer.

There was one piece of good news. While we were there they took another blood test...my PSA level was....2.1!!! This was an improvement of 33% in 10 days. Very good news!

Next steps:

1) Friday we go back to see my local urologist, Dr. Brad Davis. We will be discussing our trip with him and our decision to proceed with Option 1. Dr. Davis completed his fellowship at Sloan-Kettering in New York. We intend to ask him pursue possible options through this facility. If he finds there are possibilities, we will arrange to pursue any viable treatment options that are identified.

2) I have a long list of things to keep me busy here, painting, yard work etc.

3) I begin the job search at once.

4) Continue to research additional experimental treatments.

5) Pray and pray and pray.........

April 17, 2005

Houston, part I

We're here, it's late, we're both tired and we have to be ready for the shuttle
at 7:15. We didn't have time to do anything except drive to the hotel, check in, eat at Olive Garden (sorry Don L., it was that or Taco Chino) and we grab some groceries at the Kroger right next to the hotel.

In closing, I have to send a thanks to all for the many, many, many prayers. I feel the power all the way here in Texas! Keep them flowing, we love you all very much....stay tuned!

April 15, 2005

Just what I needed

Do you know anyone that is hiring?
I am serious, yes just what I needed in the midst of all of this is a pink slip.
I completely understand the reasoning and expect the company I was working for is on it's last leg.

So, if you know of someone or some company looking for a trimmed down 42 year old battling Prostate Cancer, let me know!

April 14, 2005

A juxtaposition

As I have mentioned at least once before, I thank God this happened to me during spring.

I cannot imagine going through this in the fall or winter. Being cooped up in the house, the world around dead and dormant....it's a little depressing just thinking about it!

So today I drive to work and scan through my iPod real quick and select Van Morrison's "Back on Top". Overall a great CD (thanks Peter for turning me on to it back at Rockhurst!), but the songs and theme if you will are about fall ("...when the leaves come falling down...") or lost love ("...reminds me of you...") etc. So there is the back drop or the setup.

I get in the car and traffic is brutal. Now I know KC has nothing to complain about compared to New York, LA, Chicago, Houston etc. but the drive that should take me 25 minutes take 45+. I bailed off the highway after having enough and meandered my way through local streets and much lighter traffic. It was a great decision....it is spring after all and there is not a lot to be seen from the interstate!

Redbuds and Bartlet pears....I must go to DC and see the Cherry Blossoms one day...tulips, hyacinths and basically just the fact that everything turned green and buds exploded over the last week or so.....

Thank God for spring, another factor to get me though this.....

I haven't told many people I work with what is going on with me, I'm not sure why not? I have told no one at work about this blog. However, through a mutual friend someone did find out. In my two years here I have had little to no interaction with her but the other day we sat in her office and she told me I inspired her. I was floored and touched at the same time. She went through and continues to go through some health issues of her own ~ find a way to send your prayers her way!

We now have less than 96 hours until our first doctor appointment in Houston, the butterflies have found a home in my stomach, it must be spring!

April 11, 2005

More than medication.....

Having a weekend to reflect on Friday's news, I am becoming more and more of a believer in two things; the power of prayer and the ability of our bodies to heal themselves. While I am not saying this is over, Friday's news was pretty encouraging!

First, I owe all of you a tremendous amount of gratitude. The number of prayer groups, prayer chains, mass intentions and
just simple silent individual prayers is staggering. My love to all of you.

[AMENDED 4/12] after some thought I hope this next passage is not taken as judgmental? The point I am trying to get across is that I use to smoke, many years ago and I quit. I knew I had a lousy diet and didn't exercise enough and it took something like this to change me. I am lucky, I have very strong will power, but at the same time I was forced into a change. If anyone reads this and it starts them down a path to a "healthier" lifestyle, than good for them, let me know what I can do to help!

Second, as I drove into work today (raining, traffic, SLOW) I noticed two things; a "weight challenged" women pulled out of Hardees and a half a dozen drivers flick their cigarette butts on to the highway. My though was this; compare your body to an automobile. Would you ever consider putting gasoline in the crankcase? Or oil in the gas tank? I don't necessarily have a good analogy, but our bodies are like a machine, if you put garbage in, your body has to expend so much energy processing the junk, it cannot focus on running properly or fighting off the "bad guys".

I'll try not to harp on and on about this, just give it some thought.....

[OTHER NEWS] On his own, Brad wrote a prayer to the Pope and read it during the announcements at school this morning.
Without offense to anyone whose children attend public schools, I wonder if they even discussed the Pope in public schools?

April 08, 2005

Results of my 6 week check up

OK, before I share the results, a little recap since you don't leave and breath this stuff on a daily basis.
- A "normal" PSA count is less the 1
- When your nunber/count gets around 4 your doctor will start to check you more often
- A score near 10 in ususally not good and is most likely an indicator you have Prostate Cancer
- My scores were 187 and 219 before I started this medication
- My doctor had indicated that at this point if my scores got down near or below 50 it would be a good signal that the medication is working

And so this morning I roll up my sleve and get proded for the millionth time.

The nurse just called.....and the number was.....

3.51 !!!!

No that is not a typo "three point five one"!!!!

While this doesn't mean I'm out of the woods, it could indicate several of the other
areas may have cleared up, or at least shruken is size? We'll find out in Houston.

But, we finally got some good medical news...we're celebrating tonight!
But, still no red meat!

April 06, 2005

...and the reason is?

I just noticed that it has been over two months since my first entry....

In 5, 10, 15, ? years from now, when I am cured, or in remission or no longer with you, there will memories. Some of these memories will be good, some may be be bad (hopefully, not to many). They will come to you as all subconscious thoughts tend do, briefly, quickly and for reasons that are hard to explain. It is this journal, my experience and my fight that are some how going to effect you and in some way I will have influenced you.

I am not professing to be a prophet, or to be sent into your life for some spiritual reason, I'm just a firm believer in "Everything happens for a reason", fate, predetermined destiny etc. My having cancer is going to have some impact on you. It may make you change your diet, it may cause you to go in for that check up (as it has for about 10 people that I know of so far!), it may make you slow down your life, or reach out to someone you haven't spoken to in years. It may do nothing more than make you laugh or cry occasionally.

I seem to have skipped one of the usual steps in this "process" and that is where I feel sorry for myself and wonder how this could have happened to me or why God could do this to me. I'm not sure why, but I see that type of thinking as a waste of time. No one can answer those questions anyway so I have skipped that "step" and chosen to focus on what is next? Or how I beat this? Or as this entry shows, what this will do to those around me?

My having cancer is going to have some impact on you, I pray that it is somehow meaningful and long lasting.

April 04, 2005

T - minus 13 days and counting....

My overall health (physical and mental) continues to be outstanding. Weight loss has slowed but still continues, by mid-week I should reach the 30 pounds lost mark. This has been the easiest part of this ordeal.
The medication is having one side effect, I am having VERY brief periods of what I assume are mild hot flashes. To the women reading this, I can not imagine how you get through a full fledged episode! Mine happen two to three times a day and only last for about 5 minutes. The only way I can think to describe it is this; imagine when you have a cold or flu that includes a fever and you experience that sensation of being hot and chilled at the same time. Clamy....

Mentally/emotionally, we are both are getting through this part with little difficulty. I sense the pressure or worry starting to mount a little as we get closer to April 17th! Again the feeling of this whole thing being surreal has returned.....

This past weekend was great, warm spring weather, a lot of yard work (too much!), I played my best round of disc golf ever, a professional soccer game with 8 second graders, the death of our Pope and a lot of needed time with family and friends.

I met a guy named Mark last week, he's quite a bit younger (early 30's maybe?), it was a chance meeting at a friends bachelor party. We swapped experiences for an hour and a half and never engaged in the event........pray for Mark, he has Hodgkin's and has already experienced two failed marrow transplants.

A very wise lady has told me time and time again that "Everything happens for a reason", in my case that reason is becoming clearer and clearer.....