She’s Got Legs…

…which don’t work as well as they used to and that’s a big frustration – more on that below.

…that are totally hairless, like my head! (And while I wait eagerly for signs of growth on my still bald pate, which woman among you wouldn’t wish her legs would stay smooth forever?)

Back to the update:

I am doing well overall and staying healthy. A Physical Therapist has been coming for home visits for several weeks. Working with her and doing the trunk and arm exercises on my own, those muscles are getting stronger but at a slower pace than I would like. My hands, arms and trunk are weaker than they should be, but feel close to where they were before the transplant.

My legs, though, are another story: lack of strength and an increase in stiffness are problematic. I didn’t realize how much I used the bit of strength still in my legs for the transfers I did. They are weaker now – probably at least partly due to non-use/atrophy – and more stiff, and the result is that I can’t get in or out of bed or get pants up or down by myself. That means I am dependent on Rick for my morning and evening routine. The problem is that my legs will only get stronger if the muscles get work and I can’t do the work by myself and there isn’t time with the therapist because she’s working on my trunk muscles/sitting balance as well as transfers with a transfer board. The best therapy I can think of is two-hour sessions at Pushing Boundaries (formerly NextSteps) in Redmond, where I’ve gone before, but getting there regularly would be another hurdle. (I stopped going when I stopped being able to drive myself. Darren is my driver these days, which works out well for both of us, but I don’t know how long I can count on him before he gets regular employment.)

Rick and I are in a daily routine where he works from home in the morning so he can get me out of bed and into some pants. He usually leaves by nine and still gets home in time to fix dinner for us. On sunny days he’s been getting in some good bike riding before dinner. And then I can’t get ready for and into bed without him. As you can see he is doing a lot for me.

And I don’t feel like I’m doing much for him - or anyone else, for that matter. So many people have reached out to me while my body went through the transplant ordeal and your encouragement has meant so much. Now I need to adjust to more of the responsibility being on me (to exercise more in order to gain independence). But I feel like I am not doing a very good job with that responsibility, and I end up feeling more stuck than I really am. I kind of feel cut off from life (my routine has me home 24/7 except for appointments) but I haven’t even called the people who have offered to come over. And then I feel badly about that, too.( Perhaps this cycle sounds familiar to some of you…)

So here I am, only 62 days out, already feeling frustrated, impatient and ready for more strength. Though it’s barely been two months. My little knots are not insurmountable – we just need to apply problem solving and time. And describing my situation/venting is probably helpful. And everything is not totally negative: I need reminders of my progress so far; I have HOPE of more progress (I can lose sight of how big hope is); and we've had sunny days(!).

But I still remember when I would just handle my problems myself. Ah, independence.

How Sweet It Is…

…To Be Loved By Rick
I don’t think I can say this often or strongly enough. Rick has helped me through this whole process and I can’t imagine making it without him.

…To Be Home
I’m sorry I haven’t updated sooner, but get me near my computer and photo editing software and I am soon lost in that world.

But home is a much better place to be! Rick has been here a lot and continues to need to do quite a bit for me. Wednesday was my strongest day yet and I felt 80 to 90% back to normal, but I’ve had less strength and stamina since – perhaps due to tapering off prednisone. I’m eating and drinking as I’m supposed to be but fatigue is a huge issue and I need to incorporate exercise into my routine.

…To Have Shannon Here
She flew in from Boston on Wednesday night (18th) and it has been wonderful! Only two more days.

…To Be Released from the SCCA
More of events happening quickly. After being released on Saturday, I had clinic (SCCA) visits on Sunday, Monday, and Thursday. At that last visit I found out I would be “released” from SCCA care on Monday, the 23rd, and on Wednesday, the 24th, will see my chosen Oncologist (Dr. Markowitz, at Steven’s Hospital), weekly for at least a month, then less often. These appointments were all made for me and came as a surprise, but a good surprise.

…To Have Support from So Many
I can’t say thank you often or strongly enough. Cards, emails, visits – though I may not have responded to you individually, they have all meant so much. I look forward to seeing some of you in person soon. (For those who are local, I’ll be sending an email that goes over Immunosuppression Protocol.)

Thanks again. Each of you is a gift to me.

Celebrate!!!!

It's official - I go home tomorrow! We've been told discharge will happen in the morning and we've been forewarned that morning means afternoon - but tomorrow!!!

Favorite Quote

Thanks for listening, all of you.

(This is not meant as a final post, by any means.)

Home At Last?

I'm pushing and it's possible for me to GO HOME Saturday or Sunday!!! They have to be sure home is ready for my needs.

My body is healing so that I feel stronger every day, and what a benefit it would be to sleep ALL NIGHT in my own bed. And I can restart home PT.

Again, I know many of you will pray. This would be a wonderful gift!!!!

They want me to go to rehab...

...but my insurance says "no."

Unbelievable! They actually denied the first request - don't they see that it's the first step toward going home? Docs are working on it: they know I'm eager and they are, too.

This is a concrete prayer request, for those of you in that category.

Thanks!

Tired of Waiting

My doc a while ago said this is a time for patience, but it's crappy being on someone else's schedule. Take this morning, for instance.

Woke at 7, buzzed the call button; an aide popped in 5 minutes later to say the nurses are busy - can I wait a few minutes? I fell asleep til 7:30; buzzed again at 8; someone different popped in to ask what I needed; said she'd gown up and be right back. I buzzed again at 8:30. At 8:40 my day nurse came in and got the day underway, as if nothing.

Thanks for letting me vent! Probably this means I'm feeling better - which I do.