Beads

I was at the "resort" today, and noticed a pamphlet for a new program Children's is starting, called "Stinger's Bravery Beads", which is named after the Blue Jackets' mascot and is funded through the Jacket's Foundation, which helps fight pediatric cancer.
As I looked at it, I though, "wow, this is great! I would love this!" Then I noticed something--it's for cancer kids only.

Why is that?

I looked at the list of things that you could earn beads for. The list is long, but here's what I've done:

--Birthdays (since diagnosis)
--BM Transplant (I'd replace with lung, but you say tomato)
--Clinic Visit
--Dressing change (let's see...where do we start? PICCS? Ports? The dressings from the burn post-surgery?)
--ER visits (ha! Ha! I'd have half a million)
--Fever
--Holidays (since diagnosis? In hospital? Either way, we'd have this covered)
--Hospital Admission (no comment)
--Line In (PICCS? Peripherals? Port access? Does this count ones that went bad, too?)
--Line Out
--Major Surgery (the transplant, the CI)
--Medical Exam (oh, the thousands upon thousands)
--New Diagnosis
--Off TPN (yup, done that! Several times!)
--OT/PT
--PCA/Morphine (ahhh, the Lovely PCA pump!!)
--Pokes (millions. I kid you not.)
--Scans/Tests (MRI, Bone scans, VQ Scans)
--School (in house)--did that with my first diagnosis
--School re-entry (many, many times)
--Spirituality (a lot! Thanks Fr. Mark!)
--Terrible, Horrible, Very Bad Day! (um, lots)
--TPN
--Transfer to PICU (one, or two, if you count post-tx)
--Transfusion
--Tube insertion (Chest, Catheter)
--Very Good Day (A few of these)

But there's one on the cancer list that you will NEVER see on the CF list:

--End of treatment

Because CF treatment only ends when youdo. There's no remission, no recovery, no "Five years and we think you're cured" status. Sure, I don't do Chest PT anymore. Other things have taken its place. But that doesn't mean that it's over.

I think we deserve some beads.

Wahoo!

Great news on the tx front--Todd doesn't want to see me for another two months! I don't have to go see them until March. :) :) :)
I am very happy about this. :) :)
And--Pulm Rehab continues apace. Last week Laura started me on interval training, which is awesome, but hard! Today we did a minute for 2.5, then a minute at 3.5, and back and forth for 17 minutes (20 minutes total with the warm-up and cool down). That's longer than we did last week. We're also continuing the weight training (today we did chest lifts, which were cool). So whew.

Pulm Rehab: Day One

Today was my first day of Pulm Rehab (PR). Since I've done this two other times, I knew that the first day was just prelims--that is, setting base standards, deciding what needs work and what is good, and deciding where to go from here.

Some results:
--My six minute walk (6MW) was good. My pace was nice and fast. :)
--The strength tests (which are pretty basic) were fairly good. My left thigh muscles are stronger than my right (which struck me as odd, since I'm right handed), but Jennie, my PT, said that post-transplant that's pretty common. So whatever. My ankle muscles are pretty weak but the calves are strong (woohoo!) Arms: shoudlers and biceps are good, but the triceps are weak (I knew that, since I hardly ever work the triceps. I just hate doing the kick-backs. Curls and shoulder raises are easier. :))
--Flexibility is good, since I can touch my toes now! Woohoo!

Upshot: Jennie thinks my right hip is weaker, so that's causing the thigh issues. We're going to work on setting up a cardio program, a strength-training program (well, building on what I already do), and working on some more flexibility/stretching ( as always, even though the yoga is paying off!).

We also do a stair test, which involved stepping on a stair step (one of the Reebok things you see in an aerobics video) to a 120 tempo (using a metronome). I did OK--I got about halfway through (1 1/2 minutes out of 3) before my left thigh gave up. Which was weird, because it's supposed to be the stronger one. Whatever!

I've had both of the PTs before, and Jennie has worked with my sister. Whitney (the other one, and the coordinator for PR) just had identical twins girls in September, so I'm glad she's back! The girls are adorable!

In addition to the work out part, I also get massage (yes!) and visits with Kathy once a week. Massage is truly awesome. I mean, who doesn't love that? (Jennie says there are people who don't. I don't get that. At all.)

The program is six weeks, so I'll be doing the gym rat thing until about mid-February. I'll keep you posted!