December 29, 2009
Interesting... I would guess that I'm either more complacent, becoming more comfortable with my situation, or that there just haven't been a lot of changes, and subsequently, less news to share. The reason doesn't matter, I'm going to enter 2010 with the goal of posting more frequently.
I'm in the midst of two weeks off and it sure is flying by! A week from today I have my monthly appointment with Dr. V. I'm still feeling the same with little to no pain for the past several weeks which leaves me in my usual predicament of not knowing what the heck to expect.
At some point in 2010 I'm going to have to move on to another treatment regime. It could be another round of chemo. Perhaps we'll find a clinical trial we are comfortable with. Maybe we'll take the conservative path, again, and move on to DES/Estrogen.
At this point in time, I do not have a preference and am not leaning one way or the other. Mary will elect or prefer to take the path that is most conservative and has the least impact on my, our, overall quality of life. She is a saint. I can't say and don't mean to imply that her choices are
wrong, it's just at times I'd like to be a little more aggressive. However, had we taken a more aggressive path over the years it doesn't mean my current condition would be any different. Once again, perhaps she's right.
Peace be with you all, have a Happy New Year and may 2010 bring you good health, joy and happiness!
December 18, 2009
In just over an hour I'm going to have lunch with a really, really good friend.
Our friend Joe is off to Tucson next week. It's a great career opportunity and what is sure to be a life changing event.
I'm not sure what I'll miss about him most? Here's a sample of some of my blog posts that mention Joe. Disc golf on Saturday mornings will never be the same without Joe, Sadie and Pete (his dogs). My mind goes back to road trips and overseas trips with Joe.
Sweden the summer of 2006, my how three years has just flown by! Followed up by the British Open. A trip to Des Monies and Omaha in April of 2007 for back to back tournaments. Perhaps the most fun was the day Joe, Rich and I went to Marshall and Columbia Missouri and played 72 holes!
A picture from this years FLHW Golf Tournament captures his personality perfectly!
So long my friend! Be safe, stay in touch and come back often!
December 15, 2009
It took some time to develop, but the final version of the FLHW iPhone App is complete and ready to download. If you are using an iPhone or iTouch, click the image below to download. You can also go to the iTunes store and search for 'FLHW'. It's free, please go download today and let me know what you think. There is a lot of information on FLHW as well as on Prostate Cancer in general. You can also share with friends, etc. via Facebook and Twitter.I owe all of this to a company here in Kansas City, MTB Mobile. Jeff and Andy put a lot into this little app, and they did all of it out of the goodness of their hearts. Thanks to both of you for all your hard work and persistence through the Apple approval process.
December 11, 2009
It seems like just a few weeks ago we were wrapping up 2008.
Today we closed the year for the Faith, Love, Hope, Win Foundation by making our annual donation to the Prostate Cancer Foundation. I am proud to announce that for 2009 our donation is the same as 2008, $32,000!
To raise that much money, in the midst of this economy makes me so proud of all that have helped throughout the year. Two poker events, a disc golf tournament, the greenhouse event and of course the golf tournament.
I'm a little speechless right now. In just four and a half years FLHW has raised over $132,000!!
We couldn't have done any of it without the help of all the players, sponsors, friends and family.
God bless you all.
December 09, 2009
At this week's event we had 42 players and raised slightly more than $1,500! It was really great to see a number of first timers. I hope they enjoyed themselves and will come back for future events! The room and tables were packed! In the end Brad took first and Tim second.
Also on Monday I had my monthly doctor visit, Lupron shot, PSA test and quarterly Zometa infusion. The meeting with Dr. V was rather quick. My PSA rose to 108.8. We decided to maintain the current regimen through the holidays. I am feeling great and the other tests were in the normal range. When I return next month, on January 4th, as long as I remain pain free and my PSA remains somewhat stable, we will just continue on. (All of the pictures are here).
December 06, 2009
Even with the cold weather we are experiencing, I played disc golf both yesterday and today. Yes, it was about 28 degrees yesterday and 33 today when we started, but with very little wind it was beautiful, perfect weather for a round. More importantly, I played pain free and remain that way 10 hours later. Next weekend will be my last opportunity to play with one of the regulars before he moves to Tuscon. I'm a little sad to see him go. He will be missed a lot.
Tomorrow is day 28 which means it's time to go see Doc V. I've been feeling really good since a week after my last visit, however we just never know what's going to happen.
Finally, tomorrow night is another event for the FLHW Foundation. We will be playing a Texas Hold 'em poker tourney at Johnny's Tavern in Overland Park. Click here for details, for those of you in town I hope you can make it!
December 02, 2009
November 28, 2009
It's two days after Thanksgiving and what a great holiday it has been this year.
We spent Turkey Day with all of our family here in Kansas City, yesterday I returned to the disc golf course and today I am off to the Missouri-Kansas football game.
I ate way too much on Thursday, but it felt good and was as expected, quite delicious.
Though I didn't play particularly well on the disc golf course, it was great to get back out on the disc course yesterday. I played pain free! It was also one of my last few rounds with Joe before he moves away. The sadness will grow as we get closer to his departure date.
The weather was spring like, high in the mid 60's. Mary, Brad and I put up the Christmas tree and I got the outdoor decorations up as well.
Last night Mary and I had a great dinner at Bristol and then saw a comedy show. It was quite funny but the sex jokes got a little tiring after two hours.
Now I am off to the MU- KU football game! Once again, the weather is ideal and I predict a Tiger victory!
November 23, 2009
I am just getting into the Alex Cross series from Patterson and only have one of his 'Women's Murder Club' series to finish.
As for Sue Grafton, for those of you not familiar, she has written 20 books in the Kinsey Millhone 'alphabet series', "A is for Alibi....M is for Malice", etc. I have read all but "I is for Innocent". I can't seem to find it at any of the used book stores and may have to resort to the library.
I stumbled upon Grafton on Spring Break 2008. We were in Anna Maria Island and after day five or so I had already finished "The Kite Runner" and another book I had brought along. I remember standing in Walgreen's trying to find something, anything to read. It was there I found "J is for Judgment" and was immediately smitten with Kinsey Millhone.
The books all take place in the mid to late 1980's and without going into detail, Kinsey is some kind of character, pun intended. She likes peanut butter and pickle sandwiches, drives a beat up 1947 Volkswagon Beetle. She is pretty much a loner. I could go on, but as I finished the book tonight, this sentence had deep meaning,
I hadn't known him long, but some people simply effect us that way. Their sojourn is brief, but their influence is profound.
I add this as a footnote to the many, many men and women I have come to know over the past 4+ years. So much has changed, so much remains the same, and so much is still a mystery.
In case I don't post before Thursday, may all of you have a wonderful and blessed Thanksgiving wherever and whomever you spend it with this year!
November 19, 2009
I don't want you to think I'm depressed, it's really the opposite. My leg/hip pain is all but gone and I'm feeling really good physically.
Maybe that's why at this particular time I'm questioning the reality of my condition.
I spent last weekend at my brother's property. He deer hunts with a few guys from St. Louis and I sit in the house and read books, watch college football and cook and overall just relax. This is the same place I wrote about in 2006 and in September of 2008. I would like to find more time to get up there. It's incredibly beautiful.
I'm really looking forward to Thanksgiving. I'm even trying to lose a few pounds as we approach the date. Looking forward to wonderful food and spending time with family. Again, more time to relax, and spend time with those I love.
November 13, 2009
There's just something mesmerizing...I can't find words to explain it. Even as I sit here enjoying this massive blaze here in north central Missouri.
It's maybe 50 degrees, but with little wind and a big blaze, it feels like a little slice of heaven.
The weekend ahead calls for nothing but relaxation, books, movies and quiet.
I'm writing this from my phone, more later.
November 09, 2009
My PSA currently stands at 93.08, that is down from 101.46 last month!
On another note, it seems I may have re-aggravated my right leg, again. The weather in KC this
It didn't really bother me the rest of the round as witnessed by my beating the other two players. (I won't name them to save them from the public embarrassment.) The pain didn’t surface again until trying to sleep last night and again today. Walking is fine but sitting and turning on the hip is tender.
November 04, 2009
October 30, 2009
October 28, 2009
Being that Brad had a 5 day weekend last week, we decided in early September to make the most of it and head for Chicago.
I wish the weather would have cooperated but it wasn't so bad. The rain was light and only bothersome as we waited outside the Shedd Aquarium. Brad had never been on the eL, in a public bus or a cab, we did all three! We visited ESPN Zone, the Hancock building, Michigan Avenue stores and enjoyed a dinner at Giordano's. It was a fun three days away and I can’t wait to go back soon.
On a personal note, leading up to the trip I once again had been having hip and leg pain. I had spent a lot time the previous week or ten days sleeping and using a heating pad at night. It was cold and damp out the week that it seemed to be at its worst. Advil helped but the mild pain was rather persistent. When we arrived in Chicago the twenty minute walk to the hotel included a very noticeable limp on my part. Leading up to the trip I had reached the point where Advil was no longer needed but the mild pain was still lingering. The good news is by the time we walked back to the eL on Saturday, it was without a limp. Three days back at work and it's all gone.
October 27, 2009
go check it out when you have a minute!
I owe a tremendous thanks to the site designer, Joyce Hutchings. She's a co-worker from years and years ago at Sprint. Joyce put a lot of time into updating the site and teaching me the basics on updating it as well. I think she did a fantastic job and hope after looking it over, you agree. As I always say, the kindness of friends and strangers never ceases to amaze me, Joyce thank you very, very much!
There are still a few tweaks for me to include but as it stands, it is ready for prime time. Please poke around the site and let me know what you think!
After all this, I'm not done! Up next, it's kind of a secret but I'll just say "Yes, there is an app for that."!
October 21, 2009
By: Jimmy Buffett
As the son of a son of a sailor
I went out on the sea for adventure
Expanding the view of the captain and crew
Like a man just released from indenture
As a dreamer of dreams and a travelin man
I have chalked up many a mile
Read dozens of books about heroes and crooks
And I learned much from both of their styles
Son of a son, son of a son
Son of a son of a sailor
Son of a gun, load the last ton
One step ahead of the jailer
Now away in the near future
Southeast of disorder
You can shake the hand of the mango man
As he greats you at the border
And the lady she hails from Trinidad
Island of the spices
Salt for your meat, and cinnamon sweet
And the rum is for all your good vices
Haul the sheet in as we ride on the wind
That our forefathers harnessed before us
Hear the bells ring as the tight rigging sings
Its a son of a gun of a chorus
Where it all ends I cant fathom my friends
If I knew I might toss out my anchor
So I cruise along always searchin for songs
Not a lawyer a thief or a banker
But a son of a son, son of a son
Son of a son of a sailor
Son of a gun, load the last ton
One step ahead of the jailer
I'm just a son of a son, son of a son
Son of a son of a sailor
The seas in my veins, my tradition remains
I'm just glad I don't live in a trailer
October 19, 2009
October 14, 2009
October 12, 2009
First, since we didn’t have to go to the lab, we were in and out of the office in under 90 minutes!
CTC - Circulating Tumor Cells: 0
Testosterone: 10 <
Cholesterol - 155
All other blood markers were normal.
C/T Scan - The only thing notated was a lymph node in my lower right abdominal area which was slightly larger this month than last. Dr. V was convinced that at this time, it was nothing to worry about.
Once we decided we were relatively comfortable with my current condition and that we would maintain the current treatment, we discussed potential future treatments. Dr. V mentioned an upcoming trial that we may want to consider, SPRYCEL® (dasatinib). We are going to do some research on it to determine if it is a viable option. When the time comes that we are ready to begin a new treatment, we will also confer with Dr. L in Houston regarding other potential clinical trials for us.
Dr. V. also mentioned Provenge as a potential treatment in the future. Of course it is pending approval by the FDA, so it is once again a matter of time. Another example of why we must continue to try to manage the cancer by maximizing the time we can gain from each treatment.
October 06, 2009
I have this long sorted story about the inefficiencies and blundering of medical care.
This has nothing to due with the current 'crisis' as described by our elected officials,
but it does say a lot about health care.
This morning I find myself furious to say the least. I was supposed go in for a CAT scan and bone scan today, along with having numerous vials of blood drawn. Late yesterday afternoon Mary talked with the radiology lab to confirm the appointment for this morning. They needed to review the usual list of preparatory questions; "Is the patient experiencing any medical issues, etc. When they asked about allergies for the first time she had to inform them that I had an allergic reaction to the iodine the last time I had the scans. One would think that since the scans were taken at the same facility just 3 months ago, the reaction would be notated in my file, but apparently not. It was at that point and for the first time that we were told I needed to be on Prednisone the night before and morning of the scans. Yes, we had been told I needed to take Benedryl in preparation, but a prescription for Prednisone was never issued, nor mentioned for that matter.
This led to a flurry of phone calls from Mary to the nurse, the pharmacy, and back to radiology to make sure the prescription was written and issued to the pharmacy and the appointment was maintained. After Mary facilitated the situation, I took the Prednisone at 11:00 last night and we went to sleep believing that the crisis was solved. Oh no...not so fast!
Mary followed up this morning first thing by calling the Radiology department at 7:15 again this morning to confirm that I was still scheduled and on track. She was questioned about what dosage the doctor had prescribed. Apparently, it was half the dose that I ultimately needed. Consequently, I took the medication for nothing as the radiologist will not allow the scan until I have the proper dosage, as my allergic reaction can be dangerous. While I appreciate and respect this, I am infuriated that A. the prescription was not issued to begin with and B. It was the wrong dosage.
I repeat, I am furious but thankful I have this outlet.
I am not in the medical field. However, looking at this situation from a patient's perspective, along with other expereiences I've had in the last few years, I cannot believe the way patients get treated. The blatent disregard for my my time, my schedule and ultimately, my health and my life is totally unacceptable. Is it that far fetched to expect that someone could have either
sat us down when we scheduled these tests and gone over this in detail or issued the prescription when we scheduled the scans so that we would be prepared.
So now we will spend most of the day getting my bone scan and then we have to be back at the cancer center tomorrow morning at 7:00 for the CAT scan.
Maybe I'm over reacting. Perhaps whining, a little and feeling sorry for myself. In the end, the results will be there next week when we meet with Dr. V, but that's not the point, is it?
October 04, 2009
The leaves are changing, the morning temperatures are in the low 40's and
thoughts of turning on the heat are dancing in my head. It's too early though!
Saturday was BUSY! A quick round of disc golf and then I attacked the fence replacement
project I had been putting off for weeks. OK, before I bore you to death with my fence project
bringing it up has a purpose.
I have said here on numerous occasions that I am constantly amazed by the kindness of friends and strangers. Yesterday as I began the deconstruction part of the project my neighbor stepped through the newly created opening between our yards and announced "Since we share the fence, what can I do to help!" You'll notice the punctuation, is not a questions mark, he did not pose it as a question. So, six hours later, after removing the old and installing most of the new, I couldn't thank him enough. I once again thank God for the people in my life, whether they be family, close friends, neighbors or strangers.
This week includes a flurry of tests. Tuesday I will spend most of the day at the KU Cancer Center being poked, injected, scanned and x-rayed. I'm not sure what to expect when we review the results on the 12th with Dr. V. Once again, I feel great, after all I was able to spend 6 hours in the yard and the only part of me that hurts is my wrist from the reciprocating saw.
So what will these tests bring? Where will they lead us on this crazy journey? The uncertainty at this point can be a bit distracting. Mary and I are doing our best to not dwell on it at this point in time. No decision will be made on the 12th, since we hope to reach back out to Dr. L in Houston before our next decision. So it will be a few weeks and I'm just not sure what options
we will embrace....Stay tuned.
I promised pictures from the golf tournament and though I am waiting for more to come in I've decided just to post what I have for now.
I'll try to post these tonight.
September 28, 2009
Friday was the 5th Annual FLHW Golf Tournament. After a complete day of relaxation on Saturday, yesterday it was time to further relax, reflect and enjoy time with Mary and Brad.
Mary and I spent a few hours at the Plaza Art Fair. We walked out a little lighter in the wallet after finding a photographer that had beautiful shots of Anna Maria Island. The Rod & Reel and The City Pier are two of our favorite places to eat when visiting, I can’t wait to return.
Back to Friday. I knew it was going to be a good day when Mary and I woke up well rested after sleeping through the night. As you can imagine, the night before is usually filled with last minute tasks and stress. This year things were different, easier. It's like we had done this before! When I let Buck out at 6:30 the sky was an absolute remarkable shade of blue. The best way to describe it is the shade of the Prostate Cancer ribbon. The temperature was crisp and in the high 50's. I stood on the back porch looking at this:
The day went off without a hitch. We once again had a full field of 144 golfers. I started the round with comments but this year it was a little different, quite a bit more emotional. I got choked up a few times but made it through my little speech without blubbering. Talking about my case in front of crowds has always been hard and the mere mention of Mary's name almost brought me to tears. After that though we had a fantastic time. We had a number of people come up and tell us that this was by far the best golf tournament that they had ever played in! Quite a compliment that touches me deeply.
I'll follow this post tomorrow with a link to all the pictures I have so far, For now, I thank God for the weather and the blessings of our generous and compassionate family, friends and supporters that continue to give us strength and hope. Without them, it would have been just another golf tournament, with them, it was far, far more!
September 24, 2009
Except for a few singles, we one again have a full field of 36 teams.In this economy, I thought we would have a hard time attracting sponsors, but we are in line with last year's sponsorships. We are blessed in so many ways!
Pictures will follow over the weekend, maybe even a little video.
Thanks to everyone, especially Mary.
September 17, 2009
September 15, 2009
My PSA number was back up, this time to 99.43
I was pretty bummed out, for about an hour. Seriously, by the time Mary and I got home I was pretty much over it. It's a good time, if there ever was one, because I'm busy...between the preparation for the upcoming golf tournament, the reorganization going on in the office, and a few other irons I have in the fire, I have little time to slow down or dwell on my PSA number.
We did leave the doctor with this plan; on October 6th I will have follow up bone and CT scans. Aside from taking up most of a day, these don't bother me too much. I am slightly concerned however about the total number of these I have had over the years. I should probably know this off the top of my head but I would estimate that this makes a dozen. That much radioactive dye can't be that good for me. On the 6th I will also have a PSA, CTC and alkaline phosphate test. The combined results of these tests are what we are hoping will lead us to a new plan.
The choices for my next treatment are limited; DES (estrogen), another round of chemo (3 weeks on, 1 week off versus last time when I did 1 on 3 off) or a yet to be determined clinical trial.
So that's the update, pretty crummy overall but we'll get through this like we have before. Many, many thanks for all the kind thoughts and prayers!
September 13, 2009
This morning Mary and I walked in the first annual Great Prostate Challenge 5k/fun walk. It's the third year for the event but the first year in Kansas City. According to Skip Lockwood (pictured above), CEO of ZERO, this year there will be seven events throughout the country. Perhaps this year the event may even break the $1 million mark? That would be phenomenal! Next year we hope to get FLHW more involved to help with volunteers, recruit runners and walkers, and provide support any other way we can. While FLHW is focused on research for advanced PCa, this is such a great cause and a great way to increase awareness we really need to help out.
On another topic, once again, a month has passed by and on Tuesday I have a follow up with Dr. V on Tuesday. Time is flying by lately. I hope and pray that the current regime of pharmaceuticals is working, time will tell.
Finally, the 5th annual FLHW Golf Tournament is less than two weeks away. We have been sold out for about a week now and that makes four our of five years! We really might have to consider having an option for a morning tee off next year. That will require a lot more coordination and volunteers but I think we can do it. Donations and sponsorships are down a little this year but I am certain the amount we donate to the Prostate Cancer Foundation will once again be significant and certainly appreciated.
September 07, 2009
September 01, 2009
August 31, 2009
August 23, 2009
August 18, 2009
PSA, down 10%
Still 88 but the trend has been broken!
Also, the CTC (Circulating Tumor Cells) test came back at zero and my alkaline phosphates are normal!!
Not much else to report, four weeks from now we re-test for PSA again
and I get my quarterly Zometa infusion.
Now, back to my 'normal' life!
August 17, 2009
This morning I'm off to the doctor for my monthly shot and blood tests.
As always, it's a crap shoot but my body is telling me things are going well on this new medication. At times, I find it somewhat amazing how in tune I am with every little tweak, ache, pain, etc. that I experience. It comes from four and a half years of constant worry, constant obsession. Right now I am feeling good vibes!
I spent Saturday and Sunday in St. Louis with my brothers. I introduced my nephews to disc golf and really hope they catch the bug. I watched a little golf with my dad and then took in the Cardinals game with my brothers. It was a great game and what a beautiful stadium! It wouldn't be a trip without providing the family with a little tech support! Two printer, scanner, faxes in and working, one with wireless support! Note to the industry, Plug and Play is a joke!
It's a rainy Monday, is this God's way of telling me he is washing away the PCa cells? Perhaps. One way or another, I'll know in about three hours.
Finally, school starts on Wednesday. Brad will be in seventh grade...I'm in shock! Where is the time going?
August 10, 2009
As we sat in Mass on Sunday and prayed, I stopped to think what I really was asking God for when I pray.
I don't ask for a cure to this disease, should I? Would that be selfish?
Mostly, I pray for time. I pray for good test results. I pray for happiness.
Next Monday is huge. Monday we will find out if re-starting Keto has helped. If not, we move on, but the options are not very encouraging.
The good news is that I feel great and would guess it is working, but we've been disappointed before, so I try not to get to excited. As Mary has put it, we are cautiously optimistic.
So I conclude with this:
God, give me strength
Allow me happiness in he midst of turmoil,
Provide me more time,
And the sense to know how to use it properly
In Jesus name,
August 03, 2009
While we have known each other for well over twenty years, it was eighteen years ago today that we were married.
As I have said here (not often enough I realize) is what she does for me is beyond special. What she means to me and how different I would be without her cannot be described by a few words on these pages.
She jokingly reminds me from time to time the she is "The wind beneath my wings" and you know what? She's right on the money!
Without you, I'm nothing
August 02, 2009
My thoughts were elsewhere as I could not help let my mind wander to the upcoming week. My friend Dan has his monthly follow up, please send a few prayers his way, Another friend John has a birthday tomorrow, Happy Birthday John!! Melissa turned the big 30 today, congratulations youngster!
Most importantly tomorrow is our 18th wedding anniversary and that weighed heavily on my mind.
I had already acquired a card and gifts for my lovely bride but I could not help wonder 'how many more?" I pray for 20 and I hope for 25. Somewhat sobering to read, my apologies, but that's where I was at and where my mind shifts to from time to time. I don't dwell on it too long either as I continue to try to focus on what's right and what's good with my current condition. I am not sure there are many 46 year old men that could play 153 holes of disc golf in seven days, much less do it with advanced Prostate cancer. Seriously, I even cam home and mowed the grass!
I'm sharing this not in the hope of receiving accolades but because that is what this blog is all about, this is how I'm dealing with it, leading and living a "normal" life to the best of my ability. I hope and pray that there are others who find it and read it and are inspired to fight on!
Dan, my thoughts and prayers are with you tomorrow. John and Melissa, peace be with you both. Mary, well I'll have much more to say about this tomorrow!
July 31, 2009
I won't go on and on with round by round coverage but instead will share the personal goals I had established before play began.
1) Shoot a total score of 360 or better. This was a bit of a stretch and meant that I had to average 60. Turns out I missed by little averaging 62.5 for a total of 375.
2) I wanted to shoot at least one round 'rated' 900 or above. A round rating is determined using your score versus all the other players in you division based on some highly complicated formula even I don't understand fully. I consider this one a success because both yesterday morning and this afternoons rounds were over 900; 911 and 912, respectively.
3) I was trying to shoot par at the woods or 'Down Under' course but shot a 4 over 58. This included some terrible putting on my part. I missed 6 putts between 15 and 25 feet.
4) Finally, and most importantly I wanted to have fun and meet some new people - this was not much of goal to set because if I wasn't having fun, what was the point of playing? Today I played with a most gracious man from Japan and a retired Army veteran from north east Kansas. During the week I played with guys from Tulsa, Austin, west Texas, Seattle, St Joseph Mo and South Dakota. In addition I met many, many other local and visiting players that were just great guys.
Enough for tonight next year the event is somewhere in OH and I have a tee time in the morning!
July 27, 2009
Prostate Cancer. I will be wearing blue every opportunity I can get in addition to an FLHW hat
For those of you not familiar with the sport, here's a little insight into this week:
Note is the voice over: the largest event in the history of the sport!!
July 24, 2009
July 20, 2009
Good news is they took all the correct samples etc. and we were in and out in just over two hours! No missing vials, missed tests or long waits for the pharmacy. It was efficiency at it's finest!
On the other hand, my PSA was up, way up. It now stands at 97.04 up from 66.14 last month.
While we did agree to pay less attention to my PSA when we left MD Anderson in April, this climb has me a bit concerned. This is my highest level since September 2006.I did leave with two new prescriptions for Ketoconozale and Hydrocortizone (HDK). This combination is what I took in 2006 when my initial treatment stopped working. It worked for 16 months, then I tried Nilandron, then I did chemo. Going back to Keto + HDK is somewhat of a risk. There is a chance that it might not work at all. We decided to give it one more try before moving on to something more serious and more toxic. We can try DES (very low amounts of estrogen) but want to keep that in reserve and may end up trying that next. Until some of the newer drugs (Provenge and Abiraterone) are either approved or open new trials, my next choice is another round of chemo in combination with some sort of clinical trial.I knew my PSA was going to be higher, I just did not expect it to be such a dramatic increase.
July 15, 2009
Inflected Form(s): sta·bler \l ""
Etymology: Middle English, from Anglo-French estable, stable, from Latin stabilis, from stare to stand Date: 13th century
1 a: firmly established : fixed, steadfast b: not changing or fluctuating : unvarying c: permanent, enduring 2 a: steady in purpose : firm in resolution b: not subject to insecurity or emotional illness : sane, rational 3 a (1): placed so as to resist forces tending to cause motion or change of motion (2): designed so as to develop forces that restore the original condition when disturbed from a condition of equilibrium or steady motion b (1): not readily altering in chemical makeup or physical state (2): not spontaneously radioactive
Are you scratching your head yet wondering what the heck I am getting at?
Well I picked up my copy of the scans and the Radiologist’s report and within the seven page report lies the bottom line, the conclusion the good news!
CT Scan: Impression
1) Stable sclerotic foci within L2 vertebral body consistent with blastic metastatic disease from the patient's known prostate cancer. No new sclerotic metastses are identified.
2) No evidence of hepatic metastatic disease or abdominal lymphadenopathy.
1) Stable sclerotic lesions within the hips and bones of the pelvis consistent with metastatic disease from the patient's known prostate cancer. No new osseous lesions are indentified.
Full Body Bone Scan
Stable bone scan with uptake in multiple pelvic osseous metastases. There is no scintigraphic evidence of new osseous metastatic disease since February 23, 2009
All this means is that the overall disease appears to be stable. On Monday we will find out what the blood and other markers (PSA, CTC, BAP etc) are indicating and we'll go from there.
Not sure what the options are, but we’ll be sure to let you know once we discuss with Dr. V, and perhaps Dr. L in Houston
July 14, 2009
Today I had a follow up bone scan and C/T Scan. Like everything else with this disease, it all takes time.
At 1:00pm I was injected with a radioactive isotope in preparation for the 4:00pm bone scan. Not much to the prep other than accessing my port and injecting me with a syringe they take out of a lead container that contains a warning symbol for radioactive material. It's kind of ominous.
Immediately after the injection I spent the next hour drinking a "creamy vanilla" mixture in preparation for the C/T scan. This scan was approximately my 4th or 5th in the last four and a half years. It's a relatively easy process that seems to have gotten easier over the years. My memory isn't the greatest but I do remember that the first few times the liquid was dreadful and it seemed to take a lot longer to consume, or perhaps it's just that the wait used to be longer after consuming the liquid. Anyway, after I finished drinking the required dose I was immediately escorted to the scan room. The C/T device is not like the scanner you see on TV or in the movies. It's like a gigantic donut. I lie on a table that slides me in and out of the donut hole. Before the scan starts however they injected me with some type of iodine that reacts
with the "Creamy vanilla" liquid in order to make 'areas of concern" light up on the scan. I can tell when they begin the injection, as I feel a weird warming sensation in my lower abdomen and bowels...lovely!
Today, shortly after the injection I started feeling a little itchy but thought it was the chigger bites from recent rounds of disc golf. As it turns out, I was was having an allergic reaction to the iodine and started breaking out in hives. I didn't put two and two together until they were done and I was back in the waiting room with Mary. I told her I was itchy, she pulled up my shirt and discovered a few hives on my stomach. I returned back to the procedure area and the doc, the nurses and techs knew right away what it was and 50mg of Bendryl took care of everything. The only problem was the Benadryl wiped me out and I needed a 45 minute nap when I got home. Also, now anytime I need a C/T I'll have to take Prednisone (steroids) the day before. Hopefully, it's low dose and at least my knees will feel good for a day! We were surprised that I had an allergic reaction, as I've had numerous scans previously, and I never had a problem. The doctor explained that one's immune system can be altered after going through chemotherapy, so we will assume that's the case.
Mary and I had 90 minutes to kill before the bone scan so we ran out to one of our favorite places to eat, the Blue Koi. Ever since chemo my favorite dish at the Blue Koi has never tasted quite the same. I am glad to report that today it was great once again! We both enjoyed the meal and our time together mid-afternoon.
The bone scan was routine: lie on the table and 45 minutes later, you're on your way. After receiving the Benadryl, I think I might have dosed off for most of the procedure and my ride home as well!
I'll pick up the CD's tomorrow and we'll review with Dr. V on Monday.
I'm not sure where this thought came from today, it may have been the murder/mystery I was reading or the article on Elizabeth Edwards from an old dog eared People Magazine, but I was thinking two things; I think Mary and I are doing a pretty good job of living a "normal" life. I'm not sure what normal looks like anymore, but my guess is there is some semblance of it in our day to day lives. That makes we happy.
The other thing I was thinking is I am grateful. Grateful for what you may ask? I am grateful for all the time God has blessed me with since this happened. So many people in this world die quickly, unexpectedly and without any warning. I was just reflecting on how lucky I actually am!
July 08, 2009
I do have a slight excuse, we spent the holiday weekend in Minneapolis with a dear friend.
The weather up there was ideal, low 80's and no humidity and not a hint of rain. We had not been there in years, literally it was before Brad was born, so we're talking 1995? For that I would like to apologize. Good friends are hard to come by and we should have visited long, long ago.
The four days were a whirlwind of activity; Mall of America, a Twins game, Lake Minnetonka, Excelsior, Lord Fletcher's, Wayzata, a visit by Mary's old house, Lake Reilly, an afternoon cruise on the Lake, spending the evening sitting around the fire pit twice, way too many toasted marshmallows, smores and almost 14 hours of driving.
On another note. work is becoming more and more stressful as we get closer to the offer of a job or you're out of a job stage. Many people I really enjoyed working with are leaving. It's going to be a much different place, if I am extended an offer to stay.
Next week I have appointments for an updated MRI and bone scans followed the next week by my monthly Oncologist appointment. More on that in a later post.
Time is flying, but I hope it's clear, I am taking time to enjoy a little of it!
June 29, 2009
Tomorrow would have been my Mom's 76th birthday. I find it really strange to imagine over 6 years have gone by since she passed! Talk about time flying!
Work has been a busy distraction. The pending merger was approved and now comes the headcount reductions and people positioning themselves for a role in the new company. I'm not one for 'playing the game'. I hope my historic results stand on their own. This is not to say I am standing by idly, but we'll see what happens.
June 22, 2009
Today was my monthly doctor appointment. I am not sure where the time went...June is nearly over.
For the past weeks I have felt the same, no new aches and pains, no need for Advil or the like. As reported, my knees hurt but Glucosamine is helping a little. I think chemo pretty much trashed my cartilage. As for cancer related pain, I really have none.
So, on to the test results. A little history; after leaving MD Anderson we agreed to pay more attention to everything going on instead of focusing primarily on PSA.
My PSA today was: 66.14
This is up from 55.13 last month. I was not at all surprised considering I am only taking Lupron at this time.
The three new tests came back looking like this:
Alkaline Phosphate (bone portion) - 6 [very low!]
Circulating Tumor Cells - 0 [excellent!!]
This was all followed by the fact they once again screwed up the forth test (the urine test). I could only ask, "Seriously?". Doc tried to lessen the blow by saying the other markers are indicating good things. I had to just bite my tongue and move on. He promised to write out very, very specific instructions for my appointment on the 14th. I'm not holding my breath.
So then we were off to the treatment center for a shot of Lupron and Zometa [a 25 minute infusion to strengthen my bones]. Turns out someone wrote the orders for next week, so it took 45 minutes to get that straightened out and then another hour to wait for the pharmacy. I'm really finding it hard to be patient in regards to the the service at the cancer center, but I will.
In the end, the plan is this; on the 14th I will have a bone and CT scan. The following week will be my usual four week appointment on the 20th. If at that time, my PSA has continued to climb we might start High Dose Ketoconazole once again. By then it will have been 17 months since I last took Keto and it MAY work again? Like a broken record, I guess we'll just wait and see.
June 18, 2009
June 10, 2009
* Every man has the right to know whether he is at risk for clinically significant prostate cancer that might lead to his death.
June 05, 2009
I guess my points are these; not only am I deeply touched by their kindness and support but I am also rather proud that this little effort Mary and I began four years ago, is starting to gain some serious momentum. True, we'll never be Livestrong or Komen but that is not our goal or our purpose. It would be ideal for the Prostate cancer community if there was a single, national, powerful group, but that might be someone else's battle. FLHW has come a long way in four short years, $100,000 raised is nothing to sneeze at! 2009 however, in the midst of this economy, is going to be our best year yet!
I am wandering in my thoughts a bit today but it is my blog and sometimes I do that. I'd like to once again say thank you to our Board, all the volunteers, sponsors, players, donors and attendees that have helped make each of our events successful.
At times the world can be harsh and cruel and hard to live in. At other times the genrousity and kindness of strangers that reminds me that God put me here to help others and do my best to live a selfless life. For me, it's too bad it took so many years and Prostate Cancer for that to really sink in.
June 01, 2009
It turns out I have over 1,800 pictures from the event!
Below is a link to the video. The video is approximately 380 of the best shots with a music
soundtrack to boot. It's about 22 minutes long but well worth your time.
The statistics for the day are in the closing credits so you'll have to watch the whole thing to find out how we did!
May 28, 2009
Tuesday we went to the cancer center for my four week check up and Lurpon shot. As usual, I went to the lab first to provide a few vials of blood to be sent to the lab. Simply routine I've done this hundreds of times, literally.
Next off was a meeting with the doc, and here is where the frustration began. It was a calamity of laboratory errors to be kind.
First, the two new tests we started last month, in order to track the two markers suggested by Dr. L in Houston, were not completed.
Yes, I wrote that correctly and you read it correctly! Even though I provided specimens in late April the lab completely screwed this up.
The urine test was never run and the lab decided that the blood test to break down alkaline phosphate was not needed. Can you believe this?
Someone in the lab decided that because the total level was within the 'normal' range, breaking it down further was not necessary. I was and remain furious about this one.
After this part of the discussion with the doc there was not much else we could do except provide more sample and move on. Where we moved on to didn’t make me any happier. It seems the blood samples I had provided earlier in the morning failed to include a sample for PSA. Can you believe it? After four and a half years someone forgot to request the blood draw for a PSA, it was simply left off the lab order!
By the way, later on in the day we did get my PSA; it's up to 51.13
Next up, oh yes there is more, was my ankle. This part actually contains good news. I'll just admit it up front; I over did things last weekend. I played disc golf everyday from Friday to Monday, I worked in the yard Saturday and Sunday and over all was on my feet way to long. By Monday night my right ankle, the same one I broke almost three years ago to the day, was pretty swollen. Due to the fear of another blood clot we discussed with the doctor and agreed to run a new ultrasound of my right leg. The good news is nothing was found. After keeping my leg elevated as much as possible over the last few days I can report that it has returned to normal.
Finally, in regards to my PSA, yes we are concerned but we have to stay on track with what we agreed to after leaving Houston. It's a very hard pill to swallow, it creates anxiety, tension, worry, fear and more. That being said we have to remain faithful that the doctors know what they are doing and the Lord is guiding us down the right path.
Many, many thanks to all of you for your continued prayers, they are powerful and help us more than words can express.
May 25, 2009
It's cool, cloudy and raining off and on, so I'm catching up on paper work
for the foundation and paying bills.
As I sit here I've got iTunes up and just fired up Zac Brown Band, the song Toes. The course contains the line "..life is good today.."
and it is my friends, it truly is good today.
May 22, 2009
We are in the midst of six incredibly busy weeks; I had to travel twice on business, we had the FLHW disc golf tournament, a graduation, a very special wedding in June that both Mary and I are a part of, wedding showers, rehearsal dinner, another charity event for FLHW, well you get the picture.
Below is an upcoming article that I received from a friend, Skip's Twitter feed.
Hope you all have a wonderful and safe Memorial Day weekend. God bless all the men and women in uniform, both past and present!
Finally - the the lady who commented on my last post, you can send me an email at: 'info at flhw dot org' (spelled out to avoid spammers).
While young men with prostate cancer have a low risk of dying early, those with advanced forms of cancer do not live as long as older men with similar forms of the disease. That is the conclusion of a new study published in the July 1, 2009 issue of CANCER, a peer-reviewed journal of the American Cancer Society. The paradoxical findings indicate that there may be biological differences between prostate cancers that develop in younger men and those that develop in older men, and that uncovering these differences may help tailor screening and treatment strategies for patients based on age.
In general, a younger cancer patient has a better prognosis than an older patient with the same type of cancer. Few studies have analyzed the health of younger vs. older men after diagnosis and treatment for prostate cancer, though.
To investigate the impact of age on prostate cancer prognosis, Daniel Lin, M.D., of the University of Washington and colleagues designed a study to examine the association between age at diagnosis and health outcomes in men diagnosed with prostate cancer in the United States. Mining the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) database, the investigators identified 318,774 men diagnosed with prostate cancer between 1988 and 2003. Men aged 35 to 74 years were stratified by age at the time of diagnosis, and the researchers examined differences in tumor characteristics, treatment, and survival within each age group.
The analysis revealed that, over time, men are being diagnosed with prostate cancer at younger ages, likely due to more extensive screening. Also, younger men are more likely to be treated with prostatectomy, have less aggressive cancers, and have a better chance of survival after 10 years compared with older men. However, among men with advanced prostate cancers, the youngest men (aged 35 to 44 years) have a particularly poor prognosis compared with older men. These young men are more likely to die from cancer or another cause sooner than older men with similar forms of cancer.
While the reasons for this unexpected finding are not clear, the researchers suspect that young men with advanced prostate cancer may have biologically more aggressive forms of the disease than the forms that are diagnosed in older men. Additional studies are needed to determine what, if any, underlying differences exist between advanced prostate cancer found in young men vs. those found in older men. These studies may help clinicians improve screening in young men and could ultimately lead to the development of better treatment strategies for these patients.
Article: "Treatment and survival outcomes in young men diagnosed with prostate cancer: a population based cohort study." Daniel W. Lin, Michael Porter, and Bruce Montgomery. CANCER; Published Online: May 22, 2009 (DOI: 10.1002/cncr.24324); Print Issue Date: July 1, 2009.
May 19, 2009
May 10, 2009
This evening, twenty four hours later, I still find myself exhausted! However, without a doubt, it was worth every minute, every step, every throw!
Yesterday we held the 2nd Annual FLHW Disc Golf Tournament. Though the weather started off a little cool and breezy, by mid-day, the winds subsided, the clouds passed, and the sky was a clear blue with a warm sun shining down on us. The day ended up being absolutely perfect.
We had 78 disc golfers and were privileged to play on a private course, located on an unbelievable piece of property here in southern Johnson County, Kansas. The owner is a wonderful and extremely generous man to whom Mary and I owe much gratitude.
I'll provide more details and many, many more pictures in a few days. We are very pleased that we raised somewhere in the neighborhood of $3,000. All of which will be donated to the Prostate Cancer Foundation (PCF) to support the research needed to develop improved treatments and a cure for advanced Prostate Cancer.
Mary and I would personally like to thank each of the Board members who generously dedicated their time to making this event a success, all of the sponsors, volunteers and players that shared in our mission for a cure. God bless all of you!