It has been awhile since the core team has been together. Yesterday all of us, sans Brad, Bobby, and Kenny, got together for lunch. I'm taking the easy way out today - simply letting Dug tell the story. Dug's a great story teller and has tremendous bike skills.
Dug's story is here:
No platelet results to post today. As far as i know, they're still up at acceptable levels. Stopping by the lab for a quick check later today.
5.17.2012
4.05.2012
Game On!
Some of you may have noticed that I haven't been very diligent in posting. Ok, I haven't been diligent at all - I haven't posted since mid-December. In December my platelets were way low and bouncing up and down like a super ball. I was trying one treatment after the next and it flat-out wore me out. I had to walk away. I'll tell you about that junk later.
I've felt really good for the last month and getting out on rides regularly. Yesterday was a breakthrough day. Rick S, Dug, and I rode Corner Canyon. Dug captured the experience in a [long] video. I haven't felt this comfortable on a bike since October 2011. By the way, for you locals, Corner Canyon has never been better. Enjoy the ride.
I've felt really good for the last month and getting out on rides regularly. Yesterday was a breakthrough day. Rick S, Dug, and I rode Corner Canyon. Dug captured the experience in a [long] video. I haven't felt this comfortable on a bike since October 2011. By the way, for you locals, Corner Canyon has never been better. Enjoy the ride.
Platelets: 224k (as of March 14, 2012)
meds: 80MG Dexamethasone (steroids)
12.15.2011
Great Team, Ugly ITP
Have you ever wondered what a person's arms and legs look like when they have ITP? I didn't think so. But if you want a peek, look way below. Warning, it's not pretty.
Another afternoon at American Fork Hospital for a round of jousting, I mean, a blood check. The Phlebotomist had forgotten that Thursday is joust day and left her jousting shoes at home so it was game off for jousting, game on for "one-hand" blood collection. Yes, one hand. I've never seen that before. She did the whole thing with one hand, trash talking the whole time! I'm telling you, these people are experts.
I waited around for the lab results. They were not good - my platelets had dropped to 19k, which resulted in a call from Dr. Rich. He's putting me back on the Dexemethasone, which I had sworn off last week and redrawing the game plan. We'll discuss in the morning.
A Look at ITP
On September 19 2011 a good-sized group of us rode Frank, Dragon's Back, and the Dry Loop. Collectively, we have done this literally hundreds of times - we know the trails start to finish really well. On this day, as we were pushing through a downhill transition part of the system, my tires washed out on a fairly tight left-hander and I ended up in the dirt. Fortunately I got my hands, arms, and legs out in front of my body to break the fall. The crash was mild but the marks it left were puzzling as you can see from the pictures below. Rick S and Dave asked if we needed to stop. My answer was, "Why?" I felt fine.
I finished the ride in fine form. A tad bloody, but just fine. In retrospect, knowing then what I know today about ITP and, simply, if I had known that I had ITP when I crashed, I would have been less likely to let my pals make jokes about my blood-letting. Incidentally, Dave B crashed in the same place about one week later. This time he was in front of me so I got to make the jokes.
 |
| The Look of an Expert Phlebotomist... |
 |
| She Collected My Blood with One Arm Tied Behind her Back |
I waited around for the lab results. They were not good - my platelets had dropped to 19k, which resulted in a call from Dr. Rich. He's putting me back on the Dexemethasone, which I had sworn off last week and redrawing the game plan. We'll discuss in the morning.
A Look at ITP
On September 19 2011 a good-sized group of us rode Frank, Dragon's Back, and the Dry Loop. Collectively, we have done this literally hundreds of times - we know the trails start to finish really well. On this day, as we were pushing through a downhill transition part of the system, my tires washed out on a fairly tight left-hander and I ended up in the dirt. Fortunately I got my hands, arms, and legs out in front of my body to break the fall. The crash was mild but the marks it left were puzzling as you can see from the pictures below. Rick S and Dave asked if we needed to stop. My answer was, "Why?" I felt fine.
I finished the ride in fine form. A tad bloody, but just fine. In retrospect, knowing then what I know today about ITP and, simply, if I had known that I had ITP when I crashed, I would have been less likely to let my pals make jokes about my blood-letting. Incidentally, Dave B crashed in the same place about one week later. This time he was in front of me so I got to make the jokes.
 | ||
| The Arm of ITP: Mild Scratches Underneath the Blood Flames. Photo: Rick S |
 | ||||||||||
| The Leg of ITP: Hmmm, what is that thing? |
Platelets: 19k
(down from 56k two days prior)
meds: 20MG Prednisone and 40MG Dexamethasone (steroids)
12.14.2011
It's all in the tagline!
The tagline for my blog is the wheels on the bike go round and round.
The tagline for my body is the platelets in my body go up and down.
Ah, I love consistency. Could it be that my platelets are simply mapping to my blog's tagline? I can't wait to tell Dr. Rich to stick that in his stethoscope and analyze it. Two days ago down, yesterday up.
The tagline for my body is the platelets in my body go up and down.
Ah, I love consistency. Could it be that my platelets are simply mapping to my blog's tagline? I can't wait to tell Dr. Rich to stick that in his stethoscope and analyze it. Two days ago down, yesterday up.
 |
| My Platelet Count from November 3, 2011 to December 12, 2011 From 3k to 56k and all points in between |
Platelets: 56k
(up from 46k two days prior)
meds: 30MG Prednisone (steroid)
12.10.2011
My Trend, It Makes No Sense
Yesterday was the second greatest day of my life (ok, slight exaggeration but no sarcasm)! My work day was busy and productive from beginning to end and as the day progressed it just got better and better. Great day.
I did my lab check at noon. Unlike the day before with the mass confusion, I felt really good and confident that my numbers would continue to trend up.
Surprise! My numbers took a step backwards to 46k. Somebody wanna explain that? I mean, seriously. Next lab check and Dr. visit is on Monday.
I celebrated the lab's fascinating news by going on a ride. Absolutely perfect conditions for a ride in December in the canyon. I'm beginning to think platelets are overrated. Loved the ride. Loved it.
I did my lab check at noon. Unlike the day before with the mass confusion, I felt really good and confident that my numbers would continue to trend up.
Surprise! My numbers took a step backwards to 46k. Somebody wanna explain that? I mean, seriously. Next lab check and Dr. visit is on Monday.
I celebrated the lab's fascinating news by going on a ride. Absolutely perfect conditions for a ride in December in the canyon. I'm beginning to think platelets are overrated. Loved the ride. Loved it.
Platelets: 46k
(down from 59k two days prior)
meds: 30MG Prednisone (steroid)
12.07.2011
Mass Confusion Today
I've come to accept that until we get this ITP problem figured out, I'll have good days and bad days. I'm ok with that. For the vast majority of days since I was diagnosed with ITP, some 30 days ago, I have felt mostly good.
Yesterday was challenging. The physical discomfort I felt yesterday induced a level of anxiety and paranoia. I'm not saying I had a terrible day, just rough. I'm surrounded by loving family members, awesome coworkers, and great friends. Even if I wanted to have a bad day, they wouldn't let me.
By the time I got to the lab for my check, I was really nervous. I assumed my platelets were tanking again. I was wrong. My platelets, in fact, climbed and my other levels were in acceptable tolerances. Great news, right? Then why did I feel off yesterday? Confusing.
Speaking of Confusing
We proved this week that we could confuse my antibodies into thinking that there are other things in my body that they should interested in. At least I think that's what we proved. See, now I'm starting to get confused.
Key learning of the week: after just four days, I'm willing to concede that the steroid I started Saturday knocked me for a loop. So we're saying bye to the Dexamethasone and going back to the Prednisone. Have I mentioned how much I hate these steroids?
The medical team needs a day to digest yesterday's results and come up with a revised game plan. I'll see the team tomorrow for an update.
Yesterday was challenging. The physical discomfort I felt yesterday induced a level of anxiety and paranoia. I'm not saying I had a terrible day, just rough. I'm surrounded by loving family members, awesome coworkers, and great friends. Even if I wanted to have a bad day, they wouldn't let me.
By the time I got to the lab for my check, I was really nervous. I assumed my platelets were tanking again. I was wrong. My platelets, in fact, climbed and my other levels were in acceptable tolerances. Great news, right? Then why did I feel off yesterday? Confusing.
Speaking of Confusing
We proved this week that we could confuse my antibodies into thinking that there are other things in my body that they should interested in. At least I think that's what we proved. See, now I'm starting to get confused.
Key learning of the week: after just four days, I'm willing to concede that the steroid I started Saturday knocked me for a loop. So we're saying bye to the Dexamethasone and going back to the Prednisone. Have I mentioned how much I hate these steroids?
The medical team needs a day to digest yesterday's results and come up with a revised game plan. I'll see the team tomorrow for an update.
Platelets: 59k
(up from 48k two days prior)
meds: 30MG Prednisone (steroid)
12.05.2011
The Audible Worked :: 20k Platelet Gain!
So there we were. I was in the big chair, Jayme had already gently set the IV needle in my left arm (thanks Jayme, you're good!), the bag of Rituxan was ready to be connected and infused, then the lab results came in. That's when Dr. Rich called the audible.
I was anxious all weekend anticipating today's lab results, which are posted below. Bottom line, my platelets got a big jump and my other hemo and hema levels are...OK. It turns out the WinRho and Dexomethasone seemed to have worked.
Next Steps
Switch back to Prednisone for a few days, lower dosage (tapering, remember). We'll do another lab check on Wednesday to see where all the levels are then adjust the game plan as needed.
Dr. Nancy W. Mortensen, Oncology FNP, ANP
Nancy's on the team trying to figure out why my antibodies are destroying my platelets. Today's news brought a smile to both our faces. I like Nancy - she claims she's not from the East Coast but I think deep down inside she has connections. She cuts to the chase. She explains things in ways I can easily understand. And when there's nothing to explain, she doesn't fabricate. Remember, the "I" in ITP means, "We don't know." I'm ok with that. Nancy's another expert. I tell you, I'm surrounded by experts!
Last Week's Ride
By the way, last week I mentioned I went on a ride. Rick S, Dan Z, and Kenny took me on a Dry Loop. Oh it felt good to get off the spinner and ride outside. The trail conditions were a tad sloppy but it sure felt good to be outside. I was noticeably slower compared to the last loop I had completed about a month and a half ago. I can see that after we get my ITP conundrum solved, I will have to dig out of a bigger hole than I anticipated. No worries.
The downhill felt exhilarating. For the collective group I ride with, the ascent has always been more important than the descent. Don't get me wrong, we all love the downhill. This downhill was special. It was the first time I had ridden in a long time with an acceptable platelet level. I felt like I didn't have to hold back so I opened it up.
In my efforts to keep Dan Z in trash-talking range, I may have pushed a little too hard. A few yards below the pipe I was too high on the left side of the single track entering the little embedded rock garden, which, by the way for you locals seems to be getting bigger - am I right? This shot me to the right, back across the single track, and into the trees and bigger, non-embedded, rocks. I crashed. Fortunately I did not bump my head or body. I landed softly in a web of branches. My Superfly, however, was not so lucky. She found one of the big rocks and didn't fair well. I ruined my front wheel and had to nurse my bike down to the trail head. On the way down we ran into Aaron, who shot some footage of my front wheel. Watch the front wheel closely.
 |
| Today's Lab. I Must Admit, I Still Hate the Little Pinch |
I was anxious all weekend anticipating today's lab results, which are posted below. Bottom line, my platelets got a big jump and my other hemo and hema levels are...OK. It turns out the WinRho and Dexomethasone seemed to have worked.
Next Steps
Switch back to Prednisone for a few days, lower dosage (tapering, remember). We'll do another lab check on Wednesday to see where all the levels are then adjust the game plan as needed.
Dr. Nancy W. Mortensen, Oncology FNP, ANP
Nancy's on the team trying to figure out why my antibodies are destroying my platelets. Today's news brought a smile to both our faces. I like Nancy - she claims she's not from the East Coast but I think deep down inside she has connections. She cuts to the chase. She explains things in ways I can easily understand. And when there's nothing to explain, she doesn't fabricate. Remember, the "I" in ITP means, "We don't know." I'm ok with that. Nancy's another expert. I tell you, I'm surrounded by experts!
 |
| Platelets UP, Smiles All Around. Nancy W. Mortensen (Oncology FNP, ANP) and Me. |
Last Week's Ride
By the way, last week I mentioned I went on a ride. Rick S, Dan Z, and Kenny took me on a Dry Loop. Oh it felt good to get off the spinner and ride outside. The trail conditions were a tad sloppy but it sure felt good to be outside. I was noticeably slower compared to the last loop I had completed about a month and a half ago. I can see that after we get my ITP conundrum solved, I will have to dig out of a bigger hole than I anticipated. No worries.
The downhill felt exhilarating. For the collective group I ride with, the ascent has always been more important than the descent. Don't get me wrong, we all love the downhill. This downhill was special. It was the first time I had ridden in a long time with an acceptable platelet level. I felt like I didn't have to hold back so I opened it up.
In my efforts to keep Dan Z in trash-talking range, I may have pushed a little too hard. A few yards below the pipe I was too high on the left side of the single track entering the little embedded rock garden, which, by the way for you locals seems to be getting bigger - am I right? This shot me to the right, back across the single track, and into the trees and bigger, non-embedded, rocks. I crashed. Fortunately I did not bump my head or body. I landed softly in a web of branches. My Superfly, however, was not so lucky. She found one of the big rocks and didn't fair well. I ruined my front wheel and had to nurse my bike down to the trail head. On the way down we ran into Aaron, who shot some footage of my front wheel. Watch the front wheel closely.
Platelets: 48k
(up from 28k two days ago)
Meds: 40MG Dexamethasone (Steroid)
Subscribe to:
Posts (Atom)