Many of you may know that I am a gadget geek. I admit it, there, it’s out in the open! So when I ran across this story, I had to post it. It addresses two things that I spend a lot of time thinking about and dealing with: electronic gadgets and hot flashes:
The only problem is I have a lot of flashes at night and I’m not sure how I’d get a laptop into our bed?
First and foremost, Happy Father’s Day to all you dads!
Thursday night I attended my first support group meeting since being diagnosed in February of 2005. This particular meeting (the organization is called ‘Us Too’) was really a group meeting, a doctor from the University of Kansas Medical Center spoke on high risk prostate cancer. It was worth going but it confirmed or reinforced two things; 1) I was the youngest of the 50+ people in the audience, by at least 15 years. A few people I met thought I was someone’s son. 2) I am on the right path with my treatment. During the Q & A I asked the doctor why he didn’t spend anytime discussing advanced PC with bone metastasis. His response confirmed that I am doing what is standard at this point. It did get me thinking about starting chemo before things get worse? With my tumors in their smallest and perhaps most susceptible state, why not attack? Something to consider and discuss with my oncologist in August.
A slight update on the travel plans, we’ll arrive in London on Tuesday morning and depart for Stockholm Tuesday afternoon arriving with enough time to play a round or two in Tuesday. All day Wednesday and Thursday until 6pm or so should allow us to play all 12 courses in Stockholm! I have received a few responses from contacts in Sweden, one course looks particularly promising! (I’ll post a link later) We’ll arrive back in London after 10 on Thursday then we’ll train to the tournament mid-morning Friday and get in a practice round on Friday.
I was reluctant to provide this update, but now that my wife and my manager have given me the green light, the cat’s out of the bag!
Only due to the fact I have the BEST wife in the world, on July 16th, I will embark on a whirlwind and perhaps, a vacation of a lifetime.
On July 16th my friend and disc golfing buddy Peter and I will leave for New York City. We’ll hang for a day with his friend Phil (they wrote a book together; Deadly; the World’s Most Dangerous Everything – available now at Amazon.com)
On Monday evening we are off to London. That’s right, that’s London! And it gets better. We’re going to meet up with Peter’s son Joseph who is in the midst of a European Disc Golf Extravaganza!
After spending Tuesday and Wednesday in London (we’ll likely train to the disc golf course at Essex University) we are then off to Stockholm, Sweden. In Stockholm the plan is to spend 2 1/2 days playing Swedish disc golf. There are 88 disc golf courses in Sweden, and we’re going to play as many as possible. Did you know the sun stays up until like 10pm this time of year?
On Friday we jet back London, and catch a train Beaminster for the crème-de-la-crème… we’re all playing in the British Open (the disc golf version)!
Sunday night it’s a train back to London and then catch a Monday flight back to New York. A night of sleep and Tuesday I’ll be off to join the family at the Lake of the Ozarks for 6 days.
Did I mention that I have the BEST wife in the world! Seriously, in the midst of all of this….this unbelievably stressful situation, she’s letting me, encouraging me, to do this….I’m not sure there are words to describe how grateful I am….she’s the best!
In twenty something years of working – I have never taken two consecutive weeks off…..people, this is going to ROCK!
After spending four hours in the woods last Sunday, the arrival of the story below in our inbox could not have been more timely!
[BTW – last weeks count, 12 ticks, 20+ chigger bites!!!]
We grew up in a much different time. My brothers and I spent our summers just as described below, in the woods, outside playing, building gravity go carts, spending hours on our bicycles, ad-hoc sports, and on and on……..
It’s a shame that today I wouldn’t let Brad have 10% of the freedom we had, too many freaks in the world!!
Enjoy, this is great!!! (Thanks Swim!!)
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TO ALL THE KIDS WHO SURVIVED the 1930’s 40’s, 50’s, 60’s and 70’s !!
– First, we survived being born to mothers who smoked and/or drank while they were pregnant.
– They took aspirin, ate blue cheese dressing, tuna from a can, and didn’t get tested for diabetes.
– Then after that trauma, we were put to sleep on our tummies in baby cribs covered with bright colored lead-based paints.
– We had no childproof lids on medicine bottles, doors or cabinets and when we rode our bikes, we had no helmets, not to mention, the risks we took hitchhiking.
– As infants & children, we would ride in cars with no car seats, booster seats, seat belts or air bags. Riding in the back of a pick up on a warm day was always a special treat.
– We drank water from the garden hose and NOT from a bottle.
– We shared one soft drink with four friends, from one bottle and NO ONE actually died from this.
– We ate cupcakes, white bread and real butter and drank koolade made with sugar, but we weren’t overweight because….
WE WERE ALWAYS OUTSIDE PLAYING !
– We would leave home in the morning and play all day, as long as we were back when the streetlights came on.
– No one was able to reach us all day. And we were O.K.
– We would spend hours building our go-carts out of scraps and then ride down the hill, only to find out we forgot the brakes. After running into the bushes a few times, we learned to solve the problem.
– We did not have Playstations, Nintendo’s, X-boxes, no video games at all, no 150 channels on cable, no video movies or DVD’s, no surround-sound or CD’s, no cell phones, no personal computers, no Internet or chat rooms……….
WE HAD FRIENDS and we went outside and found them!
– We fell out of trees, got cut, broke bones and teeth and there were no lawsuits from these accidents. – We ate worms and mud pies made from dirt, and the worms did not live in us forever.
– We were given BB guns for our 10th birthdays, made up games with sticks and tennis balls and, although we were told it would happen, we did not put out very many eyes.
– We rode bikes or walked to a friend’s house and knocked on the door or rang the bell, or just walked in and talked to them! Little League had tryouts and not everyone made the team. Those who didn’t had to learn to deal with disappointment. Imagine that!! The idea of a parent bailing us out if we broke the law was unheard of. They actually sided with the law! These generations have produced some of the best risk-takers, problem solvers and inventors ever! The past 50 years have been an explosion of innovation and new ideas. We had freedom, failure, success and responsibility, and we learned….
HOW TO DEAL WITH IT ALL!
If YOU are one of them . . . CONGRATULATIONS!
You might want to share this with others who have had the luck to grow up as kids, before the lawyers and the government regulated so much of our lives for our own good .. And while you are at it, forward it to your kids so they will know how brave (and lucky) their parents were.
Kind of makes you want to run through the house with scissors, doesn’t it?!
Yesterday was soooo much better than last January’s test. This time they knocked me out cold and I didn’t wake up until they were completely done.
The result was no polyps and better yet, no follow up required for 5 years!
Now maybe the summer hall pass begins!
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Here’s some frightening information I read last night;
> No new treatments have been introduced for advanced PC in the last decade!
> Every 19 minutes a man dies from Prostate Cancer! (30,000+ a year)
> With the number of new baby boomers reaching 50+ years old, it is estimated the number will exceed 68,000 in the next 5 years.
Something more needs to be done….I’m not sure what it is, but I’m working on it!
Just a quick hello because nothing is really new. We had a whirlwind weekend! A lot of activities each day including a major league soccer game, bbq, fishing, hanging out in “the country” and capping it off with “Chitty, Chitty Bang Bang”. One of my favorites from my youth. I remember having a little die cast Chitty, it even had a button you could push to let out the wings!
Though I didn’t make it yet, our neighborhood pool is open and I’m looking forward to many evenings and weekends down there with Brad.
Tomorrow I have to go visit my general practitioner. I met with him back in late April because I had a real strange spider bite that wouldn’t heal (has now). He conveniently reminded me I had yet to schedule my follow up colonoscopy. I don’t think I shared this information in this forum, but in the midst of being diagnosed with prostate cancer in January of 2005, I had to have a colonoscopy. It is a nasty little procedure whereby you have to starve yourself the day before and then ingest large quantities of diuretics. (Tonight should be fun!!!) With your stomach, and everything south of there, cleared out, the doctor proceeds to examine you from the rectum to the colon. It is such an enjoyable experience that they sedate you so you don’t remember any of it!!! Last year they removed 3 polyps that were pre-cancerous and this is just a follow up.
I could eat my desk right now I am so hungry!
Wish me luck tomorrow….I can’t wait!!!!
We went over the tests from last week:
– My testosterone is down to 12 (normal is over 240ish). This means the Lupron alone is working but somehow those little cancer cells continue to push my PSA up.
– The bone scan showed my back, neck and shoulders remain clear. The areas in my right rib cage showed additional improvement from December, while the areas in my hips remain constant (“unremarkable” is the term the radiologist uses, kind of a cold term to use, don’t you think?!)
– The CT scan showed no lymph node activity. There had been a small abnormality they noticed on my liver back in December. The doctor was not concerned and it was clear on these tests. She believes it was just a blood vessel – not cancer related.
– We agreed that the next thing to do is to try the Casodex again and attempt to continue manage the cancer with the Hormone Deprivation Therapy. Our goal is to get the PSA number to head back down to 1 or less from the current 11.37.
The best news is that Dr. S. said that I should wait 60-90 days before I have a PSA test again!!! So I’m free until August!! We will schedule my next PSA blood test for mid-August and then have a follow up appointment with the Dr.
The one thing the readers of my Blog can count on…..not so many updates in the next 90 days. I am going to do my best to think about ANYTHING but Prostate Cancer!!
I’m off to play golf now, and then disc golf in the morning. I am looking forward to a visit from my younger brother from
Have a great week-end and remember:
When the world says, “Give up,” Hope whispers, “Try it one more time.”
We made it through another rough spot. The nurse called today with the results of my bone and CT scans. She had good news.
The bone scan showed “slight improvement”. The CT scans showed that my lymph nodes remain clear, but there was a little area they notated regarding my right hip. All the details and the specifics of my hip will be discussed on Friday when we meet with the Oncologist. Perhaps the notation on the radiology report might account for the recent pain in my right thigh?
As we hoped, I started Casodex again today. I guess I can looked forward to less testosterone and more hot flashes. If that’s what it takes to get my PSA back down, I gladly welcome the side effects!! Now where did I leave my Chillow?
The past week has been another trip to the emotional ER. We both have been stressed beyond belief, very similar to what we experienced in December. Perhaps reading another bad poem I wrote the other night will give you some insight into where my head was at:
Curl up and cry,
it’s not time for me to die,
so much more to do,
so many new people
and places to see.
Life is so unfair,
so much time spent,
living without a care,
when tragedy comes around,
no sense of it can be found.
I pray each day,
more and more.
Time is passing,
both of us by.
I fall asleep as I cry,
it’s not time for me to die.
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From the bottom of my heart, I thank you for all the thoughts and prayers – you got us through another bump.
I am not sleeping very well again. Stress, worry and hot flashes make a wicked combination.
“Are you awake?”
“Yes”
I’ve also had a recurrence of a few aches and pains over the last week. These have not been experienced in some time, maybe last fall? Nothing severe and nothing that warrants Aleve or Advil but occasionally my left thigh and ribs emit a VERY minor pain. It comes and goes and as of yet is not an issue, I just thought I’d share.
Friday’s meeting with the Oncologist seems like months away……
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Thanks to the world’s best wife, I was able to play disc golf both Saturday and Sunday. Saturday was brutal, strong winds and 15 of 18 holes being set in their longest position made for a long, long morning. Mary heard me complaining about it not being much fun and she said “Why don’t you play tomorrow?” She insisted, so a few phone calls later and we had a foursome!
We played what is perhaps
“There are a lot of dandelions out there”
“Yes, suns and moons”
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I was even able to finish a small repair project on a few of the windows on the house, and then the family came over for grilled steaks and salmon. The filet mignon looked very, very appetizing but I was able to restrain myself once again!
Today I’ll be playing “ball golf” in a fundraiser for the Boy Scouts of America. It’s supposed to be rather cool for this time of year (64) but none the less, any day out of the office is a good one!
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This was just sent from a friend. Though my faith is growing daily I am not very well educated in prayers. I am trying to find more and more that are appropriate, this one hits so close to home, I had to share:
St. Theresa’s Prayer
May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of you
I had almost forgotten how much I dislike that whole process. Check in, early, what’s the point…they are never ready.
Wait, 5, 10, 15 minutes past your scheduled time, your name gets called. Follow the nice lady back to have an IV stuck in your arm.
She injects some type of imaging fluid and sends you off to see the fine folks in the CT Scan department.
Next, drink 32 ounces of “lemon-lime flavored” substance, wait 45 minutes. Drink 12 more ounces, wait another 45 minutes. Drink 12 more ounces and you’re ready to go. I am however, very thankful for the advancement in imaging technology. Instead of the machine you see on television, this CT scan looks like a giant donut. You lie on your back on a very uncomfortable table with your arms above your head and wait for the iodine injection to start. Then the table slides back and forth so the “donut” scans your body, just the torso and hips in my case. This whole process takes about 20 minutes. Then there is an hour or so to wait for the bone scan.
When I had my last bone scan in December I was able to see the results on the monitor. This time the technician closed the file before I could see the images. I’m not sure I should read anything into this but with my PSA number rising, I’m not sure?
Mary, of course, was there through the whole process. By my side when they’d allow her, in the waiting room when not. Neither of us had eaten all day and we didn’t finish until about 3:15. We stopped in Panera and literally gobbled down a late lunch. Mother’s Day couldn’t come sooner for her. She’s the best! I’m not feeling too verbose at this time, but I’d be no where without her.
I remain blasé about my current state, not depressed, just blah. It is going to be a long, slow week until we meet with Dr. Sheehan next Friday. I did receive an email from my Urologist and he indicated that Casodex would likely be the next step, however the x-ray’s and scans will reveal a lot.
To all the mothers out there, Happy Mother’s Day!!!!
