I don’t have for a lot of details yet, but want to share the update with you.
My Oncologist was able to get the contact information for the trial site in Atlanta. I left a message,it was returned, we spoke, exchanged emails, I sent some basic information and should hear from the scheduling nurse tomorrow.
Whew, feeling much better mentally today than yesterday.
The study nurse was quite pleasant and provided more information than I expected to
obtain. If everything works out, we’ll go to Atlanta next week to meet the doctor, study nurse, have multiple blood tests, an EKG and other various required tests. This might require an overnight stay. The following week, assuming everything checks out, I will start the trial and receive the medication.
Per the protocol outlined for this trial, every fourteen days I will have to return for the first three months. Then monthly there after. This is a lot of travel, but there are a few positives, direct flights and I should be able to fly back and forth in the same day for trips when I am just going for a blood test. Most importantly, we believe this is the treatment that will get the pc under control!
Think positive that this all works out!
When first diagnosed with cancer we try to come to grips with ‘Now what’? “Now what” with my life, my treatments, my family, my career and so on. The trepidation of now what does not end with the initial diagnosis, it goes on and on. With every up and down, every good test result and every bad, your mind immediately returns to the constant questioning. Now what?
I know some of you may be saying that this is no different than life in general, it’s just human nature to question the future, to wonder what lies ahead. While I have no argument to counter, I do believe that it is much different for those of us with cancer.
My journey, though a tad short of six years, is a constant journey of questioning. Every four weeks I visit my doctor to be retested. The results of these tests never lead to peace in my mind or in my heart. If the numbers are good, I question ‘For how long?’. When the numbers are bad, like they were last Monday, I wonder ‘Now what?’. The very limited number of options I have continues to be a challenge and weighs heavy on my mind. There are three or four things I can do next, but none of them really provide substantial relief for my heart or mind.
I am not writing this from a place of depression, I’m actually in a great place mentally. I’m just trying to make a point so that when you see me, or talk to me and I say ‘Oh I’m doing fine’, it’s a little more complicated than that…actually it’s much more complicated. I try my best to remain hopeful. I just wish for a little while that I could get a reprieve from the ‘Now what”!
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!
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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.
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.
Mary and I started the weekend off by spending the night on the Country Club Plaza. We had a great dinner and a few adult beverages as we enjoyed a much needed evening away.
Our elation was shorted lived however. Saturday afternoon and into the evening my right hip started to hurt. It was the same pain, with the same severity that I have been experiencing off and on for a few months. By Sunday morning it had become rather severe. Medical professionals use a 1-10 scale to ask patients to describe pain. Though I have a rather high tolerance to pain, the upper end of the scale was an area I had yet to visit.
While Advil has always proven to be the miracle cure for my pain, this time it failed me. 800mg didn’t even put a dent in the level of pain. We called my oncologist and waited for the return call. The oncologist on call was very nice and suggested we try alternating Extra Strength Tylenol with Advil, option 2 was the ER.
I’m not going to go into all of the details of the past two days, I’ll just say that it was at times impossible to get comfortable and there was a four hour period when I virtually could not move. Although Tylenol helped me to sleep Sunday night, that was about it. By Monday morning we were at KU Medical Center picking up a prescription for a pain killer. The pain has subsided enough that I again was able to sleep. We are now headed down to the KU Cancer Center to get blood tests, an x-ray and then visit with doctor at 3:00.
The doctor in me believes this has to be more than arthritis and related to the tumor in my hip.
This is all I know for now, details to follow tonight or tomorrow.
