Of course, as always, the title of this post signifies multiple references.
First up, I played disc golf both yesterday and today. Though I played well yesterday, today I was challenged by a course I have never played before and I stunk it up! I was even after five holes but the wheels fell off. Regardless, it was fun to be out again and play with Eric, Pete, Tim and the four Steves.
Next, and more importantly, tomorrow marks twenty eight days and that means it’s time to go see Dr. V. I feel really, really good, but as always, that doesn’t mean a thing. The routine will be the same; visit the lab for blood draws, infusion area for a Lupron shot and Zometa infusion then off to see the doc. You would think that after five and a half years (67 months) I would be used to this uneasiness. I’m not sure I ever will be comfortable before these appointments. So, I take a deep breath, enjoy the opening weekend of the NFL and try to get a good nights sleep. I can’t control what happens tomorrow, it is and remains in Gods hands.
In addition to the doctor tomorrow, we have an unbelievably busy two weeks ahead of us. I won’t bore you with the details now but I will provide updates as things progress. We are very much looking forward to the 6th annual FLHW golf tourney, which is now less than 2 weeks away. No rest until the 25th!!
For those of you in KC, here’s a great walk/5k that you should put on your calendars. Mary and I participated last year and really enjoyed it.
I hope to see you there this year! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Date / Time Sunday, September 19, 2010 @ 8:00 AM 5K Race and 1 Mile Fun Walk – 8:00 a.m. On site Registration – 7:30 a.m.
Address 10701 Nall Ave, Overland Park, KS Northeast corner of I-435 and Nall in Overland Park, Kansas
Registration Closing Date Pre-registration via website through Wednesday, September 16, 2010. On-site registration Sunday, September 19, 2010 beginning at 7:30 a.m.
$20 Pre-race registration
$25 Race-day registration
$10 Fun Walk
Entry fees are non-refundable
Brief Description Join us on September 19, 2010 for the 2nd Annual Great Prostate Cancer Challenge® in Kansas City to benefit ZERO — The Project to End Prostate Cancer. In the inaugural race last year Kansas City Urology Care donated $10,000 to ZERO and $5,000 to the Kansas City Prostate Cancer Foundation.
We are passionate about prostate cancer! We are dedicated to helping fund research and educating the Kansas City Metropolitan area about prostate cancer. Help us make this passion come true. Sign up today to run or walk.
If any of you have watched the recent HBO mini series, The Pacific, there was a quote I had written down from Episode 2. I’m not sure the exact context of the statement. The series, produced by the same team that produced ‘Band of Brothers’, provides a glimpse of what these wonderfully brave men went through in order to defend our country. It’s rather gut wrenching at times.
The quote, “There are times when you just have to pray, and hold on”, stuck with me.With treatment and a doctor appointment coming up once again, I find myself in the 28 day funk I have mentioned here before. These four weeks between appointments just seem to fly by some months.
I’m feeling great and believe, as Dr. S pointed out, that the radiation continues to provide benefits. Even with his recently positive comments, I don’t know what will happen next week, next month, or next year, but then again, do any of us?
No worries, I’m fine, it’s just one of those moments when I find myself holding on and praying.
I’ve written here are a few times about a recently approved and very exciting new treatment for advanced prostate cancer, a drug known as Provenge. Well it seems the demand is far exceeding the company’s capacity to keep up. This is something I saw first hand back in March and something that the company has been very clear about since the FDA approval in late April.
It’s just kind of sad to see in writing and know that even after Dendreon expands their existing facility and opens two others by the middle of next year, it will take some time to clear the back log of patients.
By the way, the title had nothing to do with my personal situation. Yesterday I received my 14th and final radiation treatment. For the most part the whole process was easy. I had some increased pain the first week and was rather fatigued as well. I have however been completely off pain meds for a week now and the fatigue is in the past as well.
We met briefly with the radiation oncologist and I can begin to exercise again but to avoid any exercise involving my legs for the next few weeks. Walking will be fine, but I have to avoid sit-ups so there goes the six pack abs I was working on! Disc golf of course is still a non-issue for at least two months, that is a hard pill to swallow, but I am very thankful that the pain is gone.
Sitting here watching the US Open, it suddenly dawned on me that it had been awhile since I posted. Not only had it been nine days, but so much has happened. Once I explain it all, my negligence will be understandable.
After my first three radiation treatments, basically over last weekend, I found myself once again in some considerable pain. The odd thing is that the pain on my right side, which initiated the radiation treatments was completely gone and now it was my left hip and femur that were causing discomfort. It was not nearly as bad as what I had been experiencing with the right side, but it was pretty darn close. Sleep was tough because I could only get slightly comfortable on my back. Using the Oxycodone every 4 to 5 hours, I was able to get through the weekend. On Monday I went in for my 4th radiation treatment and met with the Radiology Oncologist. I left with a prescription for 12 hour, time released Oxycontin. What a God send! I’ve been sleeping great since and was even able to return sleeping on my side that first night. Two days later I completely stopped taking the other pain medication during the day, so I now only need it at night to get some sleep without interruptions from pain.
Today I spent most of the day in the yard. My contribution was minimal, but I was able to pull a few weeds, stake and tie up the tomatoes and provided a slight bit of help to my brother in law as he worked feverishly through the heat of the day to replace some wood trim on the house.
On a related note I discovered something today; there are times when you just have to step back, face the facts and let people help you. I have always been the type to help friends, family, etc. Whether it be with a project in the yard, repairing a computer or whatever, I really take pride in lending people a hand. I however find it difficult to ask for help. Rich taught me something today, other people like to lend a hand as well! As I sat in the shade and watched him work like a horse, I knew how he was feeling. I truly appreciate his time, hard work and support.
Tomorrow is Father’s Day, and I think I’ll take some time to enjoy it! Brad is back from camp, Monday I have my monthly check up with the oncologist (hoping for another decline in the PSA!), a Lupron shot, and a Zometa infusion. After we have the visit at KU Cancer Center, Mary will take me over for my 9th of 13 radiation treatments.
Here are a few lyrics of a song I was listening to while writing this post ~
Life is a carnival It’s in the book Life is a carnival Take another look
After today, and for some unknown reason, I’m feeling a but childish tonight! When you get through reading this update, you will probably think I’ve lost it. After five years, actually 64 months, nothing about this whole ordeal will EVER get me down. I say that with complete confidence, it will not!
First off, while searching for another video I ran across this classic. This is back from the days when cartoons were cartoons. Enjoy, perhaps it’s inclusion here will make more sense if you first read further.
Today, if nothing else, should be described as a whirlwind. At 9:00am we had an appointment with my Radiology Oncologist and by this afternoon I had already completed my first radiation treatment. I guess some details would help?
First, before I forget, the steroids are working, I went 19 hours between doses of pain pills! Better ye,t the steroids did not keep me awake last night, I slept for seven and a half straight hours!
Our meeting with Dr. S was great, as I’ve said here before, we have been lucky to have always found wonderful doctors throughout this whole journey. Dr. S is another example. Initially, he spent 45 minutes going over the details of the MRI. I created a picture on my iPad to illustrate what I am about to share. Please look up at the title of this post if you have any doubts about the quality of the picture! Here’s what you are looking at and what we discussed. This is my legs and torso, my femurs are black, my bladder is red. I’ll start with the bladder and the green meanies. The green areas are swollen, cancerous lymph nodes and this is not good. They are not only pushing against my bladder but they are pushing against nerves and muscle and hence, the source of most, if not all of the severe pain I have been experiencing as of late.
The gray areas on the bones are also tumors. According the Dr. S the areas further down the femur on the left in the picture (my right side) and the circle on the right side in the picture are of less of a concern. That’s easy for him to say! If you think they look pretty scary in this wonderful illustration, you should see them on an MRI image! Mary and I, as you could guess, were more than a little shocked. The areas at the top of both femurs were almost as concerning, for another reason. Due to the amount of weight, stress and rotation in this area they are very susceptible to fractures and as the right side of the picture shows, I got some problems!
The good news in all of this, and believe me, there is good news, is that there were no fractures. On top of that Dr. S is 100% sure he can kill all of the cancer in each of these three areas. This will also only take thirteen radiation treatments, each only lasting about 8-10 minutes each day, and I already had one today.
A word of caution however, killing 100% of the cancer in these areas only means the cancer in these areas. It is not able to kill the cancer cells in my prostate, the area in my ribs nor all the other micro-metastasis that may be in other areas.
It also probably means my disc golfing days are over, at least for the next 3-4 months, but perhaps for good. I will be walking, keeping score and joining the gang and hope to return to doing atleast that much by mid-July. Yes, Mary, I heard him, I have to be very cautious!
During last month’s Greenhouse fundraiser I met a great couple, the Clarks. She invited me to attend a support group they are members of and asked me to share my journey. I gladly accepted though I did so with some trepidation. Most times I can tell the story and speak of the treatments and issues we’ve experienced with ease. Other times it becomes too emotional.
Tonight was their monthly meeting and Mary and I fought our way through a massive thunderstorm to arrive about 10 minutes late. The meeting began with the members of the group sharing their names and their stories. I was by far the man with the most advanced diagnosis and based on some of their expressions and reactions, I think they were somewhat stunned by our journey.
On a daily basis I guess in some ways I forget everything we’ve been through. When I lay it out like I did this evening, and tell ‘our story’ it is sort of overwhelming. I am glad to report I completed the tale without getting emotional. There were a few points when I had to pause and take a deep breath.
I share all this as a prelude to the latest chapter in the journey. What I am about to share is certainly a new part of the journey.
First the blood test and MRI: my PSA was down almost 18% from the previous week! And the MRI expressed some stable area but others there showed noticeable increase in activity. The Radiologist was careful with his assessment, they always are, but this time he was comparing the MRI to a CAT scan from last October, eight months ago. The one area that was rather clear is my right thigh has a tumor that has nearly tripled in size. I wish there was more to report but that will come tomorrow when we meet with the Radiology Oncologist. It is all but guaranteed that My next step in dealing with the pain will be radiation treatments. The question remains how many? Will we go after the hips and the leg? How successful can we be without compromising my bone marrow in case I need future chemotherapy?
Only time will tell, fortunately, time in this case, is less than 12 hours.
I could have sworn I used this title before but after searching the blog, I’m in luck, the title is available!
Let’s start off with “The Good” – I’ve been off Advil for nearly two days. After experiencing quite a bit of pain in my left hip last week and earlier, things took a turn for the better over the weekend. I still don’t have full leg motion, but being able to put the Advil aside is great. I was at the point where I was taking 800mg every 8 hours. This isn’t an issue once in a while, but long term use at this level can cause stomach issues. I walked a mile yesterday morning and worked out for about twenty minutes this morning. While at the oncologist’s office yesterday I had my left hip x-rayed. If this turns out to be arthritis then it looks like I might add Celebrex to my daily dosage of meds. Updates on this to follow. It’s strange that I am hoping that it is arthritis. The alternative is not a welcome thought at this time.
“The Bad” also has to do with yesterday’s appointment. My PSA number came back and it has once again gone up a little. Currently my PSA is 129.6, up from 118.3 last month. No panic has set in, we just hope to bend the curve next month!
“The Ugly” is the fact that I will be looking for a job as of June 30th. Though I have known about this since September, there were some indications until yesterday that the date may be extended. It’s not all that terrible, I have 36 weeks of severance. Additionally, and perhaps most importantly, I can switch to Mary’s health insurance next year when mine runs out. With twenty years of experience in telecommunications and a pretty solid resume I have faith I’ll find something in due time.
Oh but there’s more…Looks like out air conditioner just went out! When the thermostat is set at 76 and the temperature in the house is 86, you know there is problem! To top that off, the U2 tour was just postponed until 2011, so much for my first live U2 experience this summer!
In closing, I want to add this cliché ridden statement; “It’s all good people!” Seriously, we’ve been down this road before and we’ll come out better when it’s all through.
Part of my challenge with this blog is trying to come up with a catchy title for each post. Yes they are riddled with clichés but for the most part, I try to make the reader think, “Where the heck is he going now?”. However, when they finish they then think, “Oh, I get it!”. Let me be clear, I am in no way suggesting I am so clever that this happens all the time, just occasionally. Today is one such occasion.
In the past two weeks the world has lost two wonderful people to breast cancer. One was a former administrative assistant here at work. Though Mary and I didn’t know her well, we knew her for a number of years. When she found out my story we had a great chat about being positive and focusing on life and not the disease. When we needed items for our golf tournaments, she was always eager to ask our VP for donations. God bless you Patsy, you are
missed and I was honored to know you.
The next loss is much, much more painful for me personally. I know as I start to write about this that I will cry. When I went through graduate school from1999-2001at Rockhurst University, there was a woman, a true angel that blessed all of us students with her presence. She was the administrator for the ExecutiveMBA department, but that was just a title. For many of us, she was like a mother or grandmother. When she found out about me she called, we talked and she too was positive, reassuring, etc. At that point in 2005 she had already gone through a bout of cancer and had been in remission for some time. We saw each other a few more times at class get togethers and she was always very encouraging to me. At some point, perhaps two years ago, she called me at home one evening out of the blue. She was just ‘checking in’ but I sensed something more. I didn’t push it. By the time we ran into each other at a Christmas party in December of 2008, I was aware the cancer had returned for her. I asked her about the phone call and she admitted she called to talk, to tell me. She said that after we started to talk, she didn’t feel right about passing her burden on to me. Wow, I again am brought to tears as I remember the phone call, the conversation, the meaning of her actions. Selflessness in it’s highest form. I miss you Marian, your smile and your hugs.
On a completely different note, I would like to provide some insight into my current status. In my attempt to remain active I may have crossed the line to OVER active. Two weeks ago, I played disc golf twice during our tournament. I was a little sore, but so was everyone else! Last weekend I played both days, but it rained for most of both rounds. Two things happened; one I picked up some kind of virus and basically spent Sunday afternoon and most of Monday on the sofa feeling achy from head to toe. Additionally, my left hip started hurting with a bit more severity than I have experienced in quite some time.
This problem persists today. Advil helps for about 7 hours but I am trying to go 8 hours between doses. The last hour can be, well lets say interesting! Each day gets a little better, emphasis a little. I am trying to get by until Monday when I have my monthly Oncologist appointment and we can discuss further. I pray this little demon is arthritis but we shall see. It sure is putting a delay in the plans I had for the vegetable garden!
