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.

Green Onions

(The song title has nothing to do with this entry, but we heard it on Get Shorty. Great piece!)

Progress! Still clear of fever and rashes (!) and FINALLY off IV nutrition (!!!!): i.e., one "D" down and two to go. Still haven't gotten the sleep thing down: too much drugs (Ambien or Benadryl) and I feel "hung over" the next day; fewer drugs and I don't sleep as well and feel tired the next day.

Deb (my beautiful sister!) took some pictures: I'll bravely share one. On facebook, I captioned it "Matching hairdos."

All for now, Di

Stronger every day? Part 2

I forgot to say that the doc is convinced I don't have pneumonia, just a bit of a collapsed lung from not breathing deeply enough. Should be better now that I'm in my chair more.

Stronger every day?

Thank-you for all your thoughts, wishes, and even prayers. (I am a person of little faith these days.)

I woke this morning feeling as blue as I have ever felt - I so want a stronger body and am so tired of the dependence, the diarrhea, and the dripping of the IV. Everyone is so respectful, kind, encouraging, etc. Now that I have gone two days in a row without fever or rash, the Attending Nurse Practitioner and Doc are even more positive and upbeat. Today I met my new Attending Doc: he likes to go by his first name, Hootie.

I emailed Rick as soon as someone could help me sit up and then he appeared here before 11 am!! Life is better when he is here. Still looks like I will transfer to Inpatient Rehab will early next week and hopefully be home a week or so after that. Hopefully.

(I have felt stronger today; spent more time in my chair again. I'm getting an appetite back and am FINALLY on my last bag of IV nutrition. My marching orders are to eat as if I'm working out, because my metabolism will be ramped up for a while as my body puts so much energy into healing itself.)

Thanks for listening again.

A Longer and Windier Road

Friday and Saturday, I felt so good. Then Sunday & Monday I fought a fever. Monday night I felt so much better, I thought I had turned the corner. Then what happened?

Oh yeah, the rash. I've had a non-itchy but visually notable rash on my back. This plus the unexplained fevers meant i got a visit from the Infectious Diseases docs. They determined I ought to be switched to a different antibio. So at about 10 on Tuesday night, this new drug is being infused and within a couple minutes, I am ITCHING! So I call the nurse and she administers Benadryl and slows the infusion speed but I don' t think it had helped much before I started dealing with another fever. All in all one of the worst nights of my life. A second dose of Benadryl got the itching under control. But then I was so hot and achy it was hard to sleep. Then yesterday I felt hung over from how much Ambien I'd taken to try to sleep.

I have had 2 or 3 subsequent doses without incident: I get Benadryl first and they use the slower infusion rate. Last night was a much more restful night. Also yesterday, a CT scan of my lungs showed I have some Pneumonia. So now I have another pill - an oral antibiotic.

The Long and Winding Road

Rick again-

Diane's been making good progress but there are ups and downs on this path.  As of yesterday her immune system was recovering very well, white blood cells about twice normal level due to some growth-exciter drugs they gave her this week.  Today however she was running a fever, which wipes her out, and had an allergic reaction to an antibiotic.  So this turns out to be somewhat a trial-and-error process for the docs.  They pay close attention but it isn't a walk in the park.

Hopefully next week is a rehab stint that helps her get some strength, energy & range of motion back.  She's not eating yet, but that takes some time.  The doc says that the way her mouth healed up quickly is a good sign that her innards are recovering quickly as well.  

As I mentioned earlier, Sandy brought in some photos, so I took a few pics to show you how they fit into the room.  Lots of friends and family, nice and big, so they're visible from her bed.   

Thanks again for all the cards, letters, e-notes, etc.  It helps her to stay in touch.