I still need to see the movie “Ironman”, I hear it’s really good. Perhaps this weekend with Brad?
However, the reference and reason for my post is I now officially am experiencing my first
side-effect from chemo; metallic mouth. The best way to describe it is my tongue feels and tastes like it does after you drink something too hot. Everything tastes a little strange, though nothing has been offensive enough to stop me from eating it yet!
Now it’s off to lunch….. nothing else to report today!
Today at Mass something reminded me of a stream of consciousness that I experienced the other night while trying to get back to sleep. At some point this blog turned into more of a diary of my life and less of what’s going on within me as I battle Advanced Prostate Cancer. I spend a lot of time writing about disc golf, music, books, movies, etc. and it has been a long time since I let you in my head.
So here we go:
I’m one week into my second treatment of chemotherapy. This one has actually been easier on me than the first. No flu like symptoms this past weekend… it was quite unremarkable (a radiology term I can’t believe I just used!). I feel better than I have in months and yet it scares me…What if my PSA number doesn’t come down? I’m not in pain, in fact it’s just the opposite, but I can’t help but wonder what is actually going on inside of me.
I guess I shouldn’t doubt or question, it’s way too early, but this is my blog and I have had that thought a few times recently. I continue to pray, a lot! I pray for guidance, a cure and peace and comfort for Mary and my family. I talk to God a lot at night. Sometimes I sneak in a request for a cure but I try not to push things, he’s a little busy and I’m just one mortal man.
Time is what I ask for the most. Time for Brad to drive and graduate and go to college. Time for Meg to get married and graduate from college herself. Time for Mary and I to grow old together……or at least just a little older. I just couldn’t get though this without one musical reference. This Stones song just came to mind; “Time, time, time is on my side…yes it is”
~~~~~~~~~~~~~~~
And so there it is….short, not necessarily sweet, but right to the point.
This morning I woke at 1:30, just three hours after falling asleep. When I say I woke, I don’t mean I simply rolled over, I was wide awake.
As I began to curse the Dex (Decadron) this one hit wonder, from the early days of MTV came to mind.:
www.youtube.com/watch?v=7z9bPrUark4
“Come On Eileen” by Dexys Midnight Runners was the biggest-selling British single of 1982. Remember when MTV actually played videos?! It’s funny how your mind works……funny or frightening!
So, what is one to do at 1:30am? I didn’t want to turn on the television and wake Mary or turn on a light to read for the same reason. So I reached for my iPod and began to watch “The Wire” – www.hbo.com/thewire My brother Dan told me about this show months ago but I wanted to start with season 1. In anticipation of last night, I used my Fathers Day gift and purchased the first season from iTunes over the weekend. This is great television; a cop show set in Baltimore that is “gritty, tough. real”!
By 4:30 I had watched the first two and a half episodes and thought I better try to get some sleep. I got two.
Though I’ve not seen the show, I feel like Kiefer Sutherland on a bad episode of 24.
In the last 24 hours (pun intended) the adage I repeat ad nausea has really come to fruition; it’s not all about me!!!
At 4:20am this morning my sister-in-law gave birth to twins. They just moved here last week from Chicago and perhaps the stress of the move accelerated the arrival of the two into the world. Thank God as of 10:00am this morning, Mom, Sean and Kaitlyn are resting comfortably!
My beautiful niece and her wonderful boyfriend Alex are now engaged! They have been dating for almost five years, they are both juniors at Kansas State University – another reason for me to battle on……a wedding!!!!
My brother Doug spent the night in the hospital. What started out as back pains a few days ago has turned into some type of Gall Bladder issue. He is having additional testing today, we’re are praying for good news.
Had she still been with us, today would have been my mothers 75th birthday, Happy 75th Mom!
Wow, what a span of twenty four hours!
Off to the treatment room!!!
As I was watching my Cardinals take two of three from the KC Royals over the weekend I noticed this commercial. This is a slightly different version, but very cool none the less.
Tomorrow is chemo number #2!
Prayers are needed and appreciated!
So last week I had to go see my General Practitioner and while there I asked him for a print out of the results of the first three PSA tests he performed back in 2004 and early 2005. While two of the number were as I have been reporting for years, there is one that was wrong.
It seems that instead of a high of 219, my PSA actually peaked at 271 in January of 2005.
In the grand scheme of things, this changes nothing, but I just thought I’d report it here and set the record straight.
As for chemo, I’m now fifteen days into this and I feel great. I’m not sure this means anything at this point but, all the little aches and pains that I had been experiencing over the previous few weeks are completely gone.
My next treatment is Monday and we’re hoping all goes well and we continue to pray that I will be able to tolerate this second infusion as well as the first.
I found this website; http://wordle.net/
It allows you to create these images called “word clouds”
So I took most of the keywords from my blog and created the following (click to enlarge).
It’s now been a week and things are returning to ‘normal’. Over the weekend I experienced what I was warned about… I felt like I had the flu. My body ached, I was tired and spent a lot of time on the couch watching golf.
Yesterday we went in for my monthly Lupron shot and Zometa infusion. What should have been a maximum two hour visit to the lab and treatment room turned into a series of missing lab requests and incorrect orders. We were there for nearly three and a half hours.
We did get a blood test back, no PSA test but it did show a HUGE drop in my white blood cell count. Normal is around 11, last week before treatment I was a little low at 8.9, yesterday I was at 1.9. Ouch! This is normal and the basic intent of the chemotherapy. The WBC should begin to recover before the next treatment on the 30th.
A count this low can make me very susceptible to germs, infections, etc. I am now using more hand sanitizer than I have ever used in my life! No offense intended if I don’t shake your hand!!
The good news is I’m tolerating chemo very well so far. The bad news is….well there is none to report!!
It’s been four day, except for the first night, sleep has returned to my normal broken pattern.
I was able to play golf on Wednesday (worse than ever!) but have been able to work out the last three days. Only about thirty minutes each session, this morning I pushed it pretty hard.
As we were told might happen, I’m a little “flu like” today. My back is a little sore but I’m doing fine.
I picked up the study medication yesterday morning and began taking it immediately. There is no telling if I am getting the placebo or the Atrasentan? A runny nose is one side effect but because it doesn’t happen in all cases it’s going to be a guess.
I’ll take a shot at disc golf tomorrow and check in here later in the weekend.
It’s a day later and I feel completely fine. I did have trouble sleeping last night. I woke at 11:30 and was up until about 12:45. Then a slept for an hour, was awake for 20 or 30 minutes, would sleep for another hour, wake up etc.
I forgot to enclose this yesterday.
Historic Data:
6/9/08 52.02 (Started Chemotherapy)
Day before and day of treatment (12mg Dexamethasone)
Daily (10mg Prednisone)
With Treatment (once every three weeks); Benadryl – 25mg, Dex10mg, Zofran 24mg, Zantac 50mg, Taxotere 151mg
Waiting for trial drug (Atrasentan)/placebo to arrive.
5/19/08 48.87
4/21/08 38.31 (Stopped Nilandorn as required by clinical trial starting on June 9th)
3/24/08 34.7
2/25/08 29.4 (Started taking Nilandron on 2/4/08; Started Selenium 200 mcg on 2/26/08)
1/28/08 36.2 (Stopped taking Ketoconazole and Hydrocortisone in anticipation of next treatment)
12/31/07 30.9
12/3/07 21.9
11/5/07 23.3
10/8/07 19.30
>10/8/07 Changed Lupron from 120 day dose to monthly dose> 9-12-07 Began taking .5mg of Avodart per day. Changed Ketoconazole from 600mg twice per day to 400mg three times per day)
9/4/07 21.80
8/6/07 19.25
8/2/07 16.96
7/02/07 20.30
6/04/07 17.80
4/30/07 16.25
4/2/07 17.68
3/5/07 21.87
2/5/07 20.90
1/8/07 18.90
12/11/06 24.86
11/13/06 43.61
10/16/06 51.48 (Started “High Dose” Ketoconazole and Hydrocortisone, 10/01)[at this point and for a second time we prepared for Taxotere. First my Oncologist wanted to try High Dose Ketoconazole and Hydrocortisone.]
9/11/06 83.97 (started Zometa)
8/23/06 41.77
8/18/06 54.66(no tests in June or July)
5/19/06 11.37 (stopped Casodex)
4/3/06 4.25
3/5/06 1.45 (started Casodex again)
1/27/06 0.46
12/28/05 1.85[at this point we prepared for Taxotere, chemotherapy treatments. First I had a new PSA test and new bone and CT scans, lymph nodes clear, spine clear, ribs, femur and hips stable. The PSA dropped to 1.85 and the scans revealed marked improvement. Chemo was cancelled 72 hours before it was scheduled to begin]
12/15/05 7.18
11/03/05 4.64 (Stopped taking Casodex)
9/22/05 0.8
08/11/05 0.35 [nadir]
6/24/05 0.55
4/17/05 2.51 (taken at MD Anderson, Gleason lowered to 7/7)
4/06/05 3.51 (Six weeks after starting Lupron and Casodex)Original Gleason scores (7/8)
Pre-treatment tests:
2/18/05 Started Lupron
2/11/05 Started Casodex
2/?/05 219
12/?/04 189 (Original test)
