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.

The Look of an Expert Phlebotomist...

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.

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)


Tomorrow I will lift my car just because I can.

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.

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)

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.

Platelets: 46k

(down from 59k two days prior)

meds: 30MG Prednisone (steroid)

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.

Platelets: 59k

(up from 48k two days prior)

meds: 30MG Prednisone (steroid)

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.

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)

This Note Got To Me :: From the Altar

Those of you who roll in the UC (Utah County) are familiar with the Rock Pile, which over the years has also been referred to as the Altar. All great trails that originate in the UC ultimately end up at and go through the Altar. At the Altar we pay our respects and say our prayers. When we're done catching our breath we roll on. I never expected to be on the Altar but I'm grateful Brandon put me on it. I think it's the reason my platelets jumped up 2k yesterday. Thank you, Brandon.

Brandon Literally Put Me On the Altar Yesterday and I Had A Sudden 2k Platelet Boost
Photo Credit: Brandon Smith

From Brandon's Saturday post
[http://southcountyciclista.blogspot.com/2011/12/3-ps-of-riding.html]

Platelets: 28k

(Up from 26k earlier in the morning)

Meds: 40MG Dexamethasone (Steroid)

 

Total Change of Direction x2 - Dr. Rich Calls an Audible

Yesterday I mentioned that my doctors and I were changing our direction today on our mission to get my platelets up to functional levels and keep them there. We ended up changing directions, twice.

I reported to Dr. Rich's lab this morning to start a new (to me) treatment called Rituxan (Rituximab). Rituxan is administered through an IV injection and used to treat certain types of non-Hodgkin's Lymphoma. In my (ITP) case, the plan was to use it to increase my platelet count because the plan I was on wasn't cuttin' the ketchup. I was excited and nervous at the same time. The side effects of Rituxan can be harsh, especially during and after the first dose.

Meet Dr. Rich's administrative staff, Kelly and Jamie. Both are the best in the biz!

Kelly and Jamie - There's Nothing They Can't Solve!

Reporting for Duty - December 2, 2011

Bad Bad Antibodies

Jayme - IV Expert and Super Nice

The first item of business was to set up my IV. Jayme, not to be confused with Jayme at the front desk, did the honors. I have to say, she's an expert. I didn't feel a thing. OK, maybe a slight pinch. Jayme took a blood sample, as is customary every time I step in the door, for a quick analysis. The results showed that my platelets had dropped to 26k from 43k where they were two days ago. My body just insists on destroying my platelets.


Dr. Rich Calls an Audible
With the platelets on a rapid decline, Dr. Rich went Peyton Manning on me - he called an audible. He took a look at the defense and audibleized. He changed the plan on the fly. I love that! Instead of an offensive strategy, a 5-hr infusion of Rituxan to increase platelets, he switched to a flanking strategy. Consulting with other cancer experts, he decided to target my evil antibodies.

Dr. Nathan Rich, Oncologist - Moments After He Called the Audible. Expert!

The New Plan
Let's get some WinRho in there to divert the antibodies' attention. WinRho's tagline is: Upward and Onward: Supporting Platelets and Patients for More Than 15 Years. I look for two things in taglines: Cheese and Buzzwords. WinRho delivers and makes me feel sooo good. I also like WinRho's administration instructions, WinRho SDF must be administered via the intravenous route for the treatment of ITP. Viva WinRho. Woot. I'm pumped already. Let's get it in!


Dear Ricky, What the Hell is WinRho?
Good question. From the Internets (so you know it's true): WinRho SDF is an immunoglobulin (Ig), which contains antibodies to the Rh_o(D) antigen. Exactly how it works is not known. Very consistent with me: Exactly how I work is not known. Dr. Rich explained it to me this way. WinRho is a blood product that will coat my [positive] red blood cells. The reason WinRho will behave this way is because it will be extracted from negative blood types. The negs don't like the pos and the pos don't like the negs. When my evil antibodies see that action, they will stop their feeding frenzy on my harmless platelets and go attack my red blood cells. See, my evil antibodies want to be heroes after all. Since my bone marrow factory is doing its job properly, cranking out platelets, and my now heroic antibodies are busy working my red blood cells, my platelet count will climb. Brilliant!


What About Your Red Blood Cells, Ricky? Don't You Need Those?
Yes, I do need my red blood cells - they carry oxygen, iron, and, uh zzz... and that's an equally important job. Dr. Rich explained the answer but my head and other parts were bumping so hard that I don't remember it. It's on my list of questions next to, When do I get my prescription for marijuana? and Does EPO come in pills because I'm really sick of needles?


WinRho Doesn't Feel Good
I finally got my WinRho injection at 8:30pm. It came straight out of the fridge and into my arm. It went down cold but smooth. In all, it took about 15 minutes to get it in. My nurse had to literally squeeze the bag with force to get it all in. I think this stuff has the viscosity of like Pennzoil 10W-40. I'm a Quaker State man myself. Because of the crazy list of potential side effects that come along with this "we don't know how it works" WinRho, I had an eight-hour observation period. I spent the night at Utah Valley. This place is starting to feel like Marriott to me. My side effects included hot and cold flashes, sore throat, slight back pain, really blurry vision, then extreme hot and cold flashes, followed by a laughing epidemic. Sounds like a normal day back in my office.


One other change to the game plan includes weening myself off of Prednisone because it's not doing anything for me and switching to Dexamethasone. Dex is 4-5 times stronger than Prednisone. We'll ramp it up though so I don't go too kooky too quickly, starting with 40MG. Prednisone's for kids. Wait, I really don't mean that. It's nasty!

Chad, High-end Photographer. Expert!

Other fun things today included a trip to the imaging studio for an exciting photo shoot. We took close-ups of my lungs, abdomen, and pelvis. I told them no Photoshopping me - I want to be all natural just like the celebs in mags. CT scans are always a pleasure because I get to drink the worst concoction ever invented designed to create internal contrast. You get better pictures that way. I went with the warm, delicious, and always gaggy "Berry Smoothie." Settle down, Jamba Juice, you don't need to call the bankruptcy lawyer yet. But if you don't bring your prices back down to reality, don't lose that number. Thank goodness Chad didn't make me drink the Avagard again. Kid's got a warped sense of humor.

The Gift That Keeps On Giving

Special Bonus...Affirmations
Now this is going to freak some of you out. Brace yourselves. Sitting down? Right before my 3:45am urine sample, my PCT, Nicolli, came in and whiteboarded some affirmations. Then she made me help her pound out some new ones...for me. They're on the board. Wow, this Dexamethasone rocks! Hey Stuart Smalley, I like you. I really like you. If I'm lucky, I'll get my chakras adjusted before I get out of here.

Nicolli. Expert PCT and Affirmation Maker

I Feel Better Already

 

Platelets: 26k

(down from 43k two days ago)

Meds: 40MG Dexamethasone (Steroid), 3.75MG WinRho