This hasn't been a good year.

Well, I'm home. Again.

I was in Banner Good Sam from Apr. 15 to the 28th. The preliminary diagnosis was pneumonia, but it was really the "weird respiratory thing" I've been complaining about since February. I should never have left the hospital without resolving it the last trip.

But, it wasn't pneumonia, either. It was pulmonary edema, complicated by some other things, plus another round of renal failure.

More later...

The next adventure...

In twelve hours I start the next phase of this adventure, semi-outpatient chemo.

If my blood counts are high enough I'll check into the hospital tomorrow morning. I would expect them to start the chemo pretty soon after that; it will take about eight hours. I'll stay overnight, then be discharged around noon.

I just learned today that I need a follow up treatment the following day. We're hoping to be able to take care of that on the same trip. It's in an outpatient clinic at the same hospital. Maybe.

There are a lot of unanswered questions, this first time through.

I'll be offline for the next two days.

Today's the day!

I'm being discharged from the hospital today!

I've seen my doctors, had my questions answered, cleaned up.

I've set up my next chemo session, talked about what to expect, talked about what to take.

I've talked to the discharge nurse, who will remove the outer part of the port on my chest, tell me how much insulin to take and give me prescriptions to continue at home.

After two weeks of outstanding food, breakfast was awful.

See you soon!

Starting to add to the inpatient blog... rooms

It's been a busy week for me. I'm happy with my decision to create a supplemental blog about my inpatient stay, but I've had no chance to get back and work on it.

I know that many of you have questioned the number of room changes I've experienced. Some of you have become quite indignant on my behalf. My first post will be a travelogue.

Look out, world!

My oncologist's partner visited me this morning. He isn't releasing me today, but thought it a good possibility she will tomorrow. When I reminded him that my friend is available to pick me up tomorrow, but not Tuesday, he laughed.

The internist told me later that there is a note on my chart, "May go home Monday."

Remember those red blood cells we were waiting for? For two days? And I said that Heavenly Father knew what I needed and when I needed it? The blood arrived at 4 am today, nearly 48 hours after it was ordered. The blood blank protested the transfusion; they felt my red cell count was too high. They woke me up at 5 am to make me read out loud to a witness a statement about criteria. They called the oncologist on call, too.

When my blood was drawn later my red cell count had gone up on its own.

Flo

Time to leave...

I feel well. I'm thinking clearly, most of the time. I've been tired today, waiting for the blood and having low blood sugar, but that's ok. I worked hard this week; I'm enjoying the weekend.

I've packed up the stuff I'm not using. I've started making notes for future treatment cycles and to share with others. I ranted for 25 minutes today, with my door open, about a medical philosophy that sees a human with diabetes as broken, with an unalterable downward future, when I am proof that is not true.

It's time to leave.

P.S. My doctors are wonderful! They support me in my choices. They are supporting my choices even in the hospital, when the cancer treatment is aggravating the diabetes. I was ranting after reading the Diabetes patient information they gave me.

Status check

Morning all!

1) I may disappear from cyberspace abruptly.

Heavenly Father provided this laptop for my use when I really needed it. I've accomplished what I most needed, I've made arrangements with my friends to take me home, I've done a little business...I'm ready to let it go when another patient needs it. That could happen at any time, theoretically.

2) That would leave me with just my camera and my own laptop. :)

I did some good digi-scrapping last weekend, but haven't touched my own computer since getting wi-fi. I have a lot of ideas I want to play with. Since I'm feeling confident that things are in order for my discharge, I've finished formal PT and OT, I'm expecting only one more appointment this weekend, other than routine medical checks...I can play!

Oh...and my red cells are down a little, and I'm getting a transfusion today. Sitting in a chair, or my bed, playing on my laptop, sounds real good.

3) medical status

My lymphocytes are down around where they were when I was diagnosed!!!
My red cells are down a little more, but I'm getting a "top off" transfusion today, to see me through until the next chemo cycle.
My neutrophils, the ones that protect me, are still low. My doctors would rather not discharge me until they return to normal. The partner who is seeing me this weekend won't; my own doctor, when she returns on Monday, has the option.

I'll be getting a transfusion today if the blood ever comes through.

My pre-existing auto-immune disorders make it very difficult to find blood for me. The first batch took a few hours. The second batch took about 12 hours. This batch has so far taken more than 24 hours, and it's still not here.

4) Summary

After talking with my doctor and nurse today, I now expect to be discharged on Monday. That is not set in stone, but it feels right.

Thank you, all!

Flo

Going home, going home...

Barring major surprises, I will be discharged on Sunday or Monday, Jan. 25 or 26, 2009.

My home is ready and my ride arranged, thanks to wonderful friends.

This week I have made absolutely amazing progress. On Monday I looked and felt like the Firestone man, the result of fluid retention, as much as 50 pounds. I couldn't wiggle my ankles; getting in and out of bed was a major chore. I celebrated my accomplishments: I cut my lunch by myself. I brushed my hair.

By Wednesday I had started Physical Therapy, to regain my strength and stamina. Walking once around the nurses' station, with a walker, was a big deal. Also, a laptop had been delivered, courtesy of a local foundation, and I began to reconnect with the world.

Today I was discharged from PT; I still have homework to do, but no longer need supervision and instruction, just persistence. I've spent some time on my business, requested help for my concerns about returning home alone and worked with friends to make it happen.

I've controlled diabetes for twelve years without medication through lifestyle modification. The drugs that saved my life have changed that, temporarily. Today I filled and injected my insulin, all by myself! Even more important, I've done so well getting back to my regular routine that this morning I didn't need any.

It's Friday night, and there's nothing on my To Do list!

And that's a good thing. My red cells no longer die overnight, but they still don't stick around long enough. I'm waiting for a transfusion, a "top off" to carry me to my next chemo cycle, but it won't be available until tomorrow. I'm tired, and the mental focus that has carried me through the week is slipping. Well, has slipped.

So I'll sign off, and relax, and maybe do a little digi-scrapping. Or maybe just nap.

Thanks!

Heavenly Father will provide

I finally recognized that I've been pretty stressed this week. With information changing quickly I have panicked.

Please, accept my apologies. I didn't mean to take it out on those I love and trust.

The hand of God has been absolutely clear during my stay here, over and over and over. He knows what I need. He knows when I need it. He knows when I need to just stop what I'm doing, to listen, to breathe, to ponder.

I have been blessed these two weeks, repeatedly. Is everything great? No, of course not. This is not how I would have chosen to spend this time. And money!

But it has been a positive experience, a life-changing time, from which I see an enormous potential for good.

I'm going to do my best to relax, to trust the Lord, to wait on His timetable. Everything will get done that needs to get done.

Thank you, all. I appreciate your prayers, and keep you in mine.

Good night!
Flo

The Rest of the Story....

On your right please notice a new section, The Rest of the Story.

I have created a new companion blog to contain my anecdotes, whines, laughter, tears -- only once!, travelogue -- eight rooms in 12 days, so far.

That will allow me to (try to) limit this blog to providing information to those trying to help me, without disappointing those who need a good laugh.

And there has been lots of laughter. Lots of blessings, lots of divine intervention, lots of opportunities for service, given and received.

I have been greatly blessed. I appreciate your prayers, your love, your service.

Thank you!
Flo

Hi, everyone, I'm back!

Back online, not back home.

It's been a very, very long and tiring day. I have had two weeks of extreme experiences, which I will post eventually, but not tonight.

I would like to thank you, all, for your generous prayers, blessings, phone calls, service, errands, support, support of my out of town sisters and the other things that have made this difficult time not just bearable but a positive experience. Thank you!

I am online through the generosity of www.theblf.org, a foundation which donated wi-fi laptops for the use of onco patients at Good Sam. The story behind the foundation is impressive; I encourage you to read it. I cannot express my gratitude enough for this gift. I have the use of the computer until either I leave or another patient needs one and I've had this the longest. (There are three computers which rotate through the unit.)

I'll try to post a real update tomorrow; for now I'll just say things are going very, very well, although there is still no release date in sight.

And, yes, I'm going to make another, begging post. It's just physically much easier for me to type than to speak or write, and I can reach all my local friends at one shot.

Flo