Saturday, February 7, 2009

Post from the hospital long-delayed

Sorry I haven’t posted more. When I try to find the keys, either my hands are shaking, my vision and mind are blurry, someone walks in or calls or I make so many typos I quite (there’s one right there: I meant quit) in exasperation. In other words, it’s hard to concentrate. I’m sure anyone who’s been in the hospital can understand. It probably took me more than half an hour to write this paragraph.

So here goes:

Day +5
“You look great. You’re right where you should be!”
These words from Dr. Alyea
put me in a good mood, not necessarily the looking good part, although that helps, but rather the right where you should be part.

It is the opposite of “we don’t know what is happening with you,” a viewpoint I have heard all too often. Unfortunately, part of being where I’m supposed to be is the increase not only in mouth sores but also now soreness down my throat and esophagus. They increased my dose of Oxycodone from 5 to to 10 mg., and the higher dose does seem to keep the pain in check.

I told Dr. Alyea that I didn’t like taking too much pain medication, and he said there is no such thing as too much. “They don’t give you a discount or a credit at the gift shop for taking less,” he said. The important thing, he stressed, is to keep pain minimal. The benefits are wide-ranging and mostly obvious, and I know that it’s especially important to keep drinking and eating. During my first round in 2003, I ended up on IV nutrition for more than a week, and I really hope not to go there again. Of course I might end up on a pain pump and possibly IV and I need to remember that it’s temporary and not a result of my failing to try hard enough.

PJ, a kindred spirit I met through the blogosphere, stopped by after her check-up at Dana-Farber. She looks terrific, and it’s been nice getting to know her through her blog, then phone calls and now in-person.

Ben had a few days off and came to visit that night. As usual, it was great too see him. He stayed at friend’s that night and popped in to say hi Friday morning. He did all the driving, and I got the bonus point.


Day +6
I moved to Room 57. I should say “we,” because Diane did most of the work. The room is a tiny bit bigger, and much brighter. In my old room I got only 25 minutes of sun on a good day. This room is bright most of the day, and I think it’s good for my spirit.

The big news Thursday is that I only had one platelet. This is an abbreviation for 1,000; normal platelet range is 150,000-350,000. Estimates of the normal range slightly. The sound of saying a person has just “one” platelet,” however, is an attention-grabber that leads to fear of bruises and bleeding to death. I was told to take a break from my walks on the pod and to be very careful about bumping into things. I did go out once or twice to get a cup of ice, and the nurses who saw me looked like they thought I was taking my life in my hands.

Day +7
Much of the day consisted of waiting for platelets, which finally arrived at 4 a.m., having been ordered by 9 a.m.. I also needed two units of blood, which I got at around 7 p.m. and 11 p.m. I jotted down a lot of impressions duing the long evening, but couldn't understand them in the day.

Day+8
Dan DeAngelo, my original dotcor, dropped in this morning. I had switched to a transplant docotor (Alyea) when I went the route of the allogenic transplant after the allogenoic, but he is still involved in my care. We talked about my health and his kids and then, of course, his view of how I look.

"You're looking pretty good eight days out!" he said.

36 comments:

Michelle B said...

Glad to hear from you Ronni. I have been thinking of you and wondering how you were. Sounds like the new room will be joyful and sunny. Keep those good thoughts and I will keep thinking happy thoughts of and for you.

PJ said...

Glad to see this post. I figured it was the loopiness holding you back. That, or the mean old nurses had confiscated your computer due to your low platelets. Type gently ...

Post when you can, and don't worry about the flow or the sense or the length. We just want to know you're okay.

Nancy Piccin said...

Dear Ronni, I have been thinking about you and am glad to see you're writing. Continuing to telepath you good positive thoughts!

Wendy S. Harpham, MD said...

Dear Ronni,

Thanks for keeping us in the loop.

If and when you feel like it, you might enjoy a column I wrote for oncology nurses and doctors entitled "Lookin' Good":

http://www.oncology-times.com/pt/pt-core/template-journal/oncotimes/media/WendyHarpham-LookinGood-OT-May102008.pdf

With lots and lots of hope,
Wendy

Nelle said...

You are thought of more than you could ever imagine and I am so happy to see when you have posted an entry. I check each time I am online. The platelets would have me nervous but by now with receiving some, I am sure your count is up again. Thank you so much for keeping us updated with what is happening. You do need those pain meds and although I hate feeling loopy, you need to eat and drink. I admire your strength and I hope that each day you are one day closer to a future with your focus on easier things. Wishing you good health,
Nelle

Susan C said...

Thanks for updating us, Ronni. Like so many others, I think of you and wonder how you're doing daily.

Anonymous said...

Great to hear you're ok Ronni. It's so good to hear you are looking well!
Keep taking the pain meds, it's not worth suffering the pain.

LR

Tami said...

Thanks for writing - even though it is hard. The move to the new room is a great idea - bask in that vitamin D!!

Hope to see you soon - I'll follow the positive karma up the NJ Turnpike!

Tami

SRS said...

Dear Ronni, So nice to hear from you today. XOXOX Susan

Marjorie said...

What an amazing, frustrating, challenging, brave experience Ronni. I'm so glad to be able to read about you, even if you're loopy. I hope you're taking as much medicine for the pain as you need. As I said on the phone, you're a warrior no matter what.

Much much love, Margie

Jay Goldman said...

Dear Ronni,
Your fortitude blows me away. Glad you got your platelets. Thanks for staying connected and letting us know how you're doing, but please take care of yourself first.
Jay xo

donna said...

Remember friend, you're on the upswing now. Everyday you are one more day out and one more day closer to wellness. Can't wait for the day that this is all a memory. You're doing it, Ron. Love you!

Scared Mom said...

Hi Ronni

I stumbled upon you blog just recently.
My son (25 years old) is scheduled for a transplant, we hope, next month. He has AML. A match has been found.
Reading you blog gives me some sense that there is hope for him.
As I have said before I am so scared - I can't imagine how he feels.
He has had 2 rounds of chemo and a very bad infection the last time wound up in ICU.
I hope he is stong enough to keep fighting like you abviously are.
He has heard those words before too "you're right where you should be" He should be continuing on with his education ( year to go in Graphic Design) and with his
girl friend making plans for their future However, that is not the way it works out is it....
Keep Fighting Ronni.

pam said...

Dearest Ronni,

Dr. Alyea, Allyes! Eight days out and going strong...you amaze everyone, with as Jay said, your fortitude, and as Margie said, you are a warrior, and i might add, a Warrior-Friend, in the Quaker sense...and i'll be right behind Tami on that road, may it rise up to greet thee always...xop

Anonymous said...

Ronni,

I could not type at all and the words on a computer "jumped" and made me feel sick. I am impressed you are typing at all.

Wonderful news- just keep going and take as many meds as you need to!
xo-Lea

Becca said...

i'm a lurker. i am glad it is going well, even if well means pain and sores. good thing about the sun, it def affects my spirits.

Howard said...

Your loopy days will soon be in the rear view. Stay as comfortable as you care to and let the new soldiers do their work.

Glad to see this update and will be back often.

H

Mieke said...

I love that you still type on even though your eyes are bothering you, you're a bit shaky and the meds make your head feel loopy! It's good to hear you're coming along, and thank god you have a room with more light-it's hard enough to go through winter without enough sun exposure- but to be stuck in a room and have dim lighting? Terrible! Glad your docs are telling you you look great and things are where they're suppose to be at. That's really great. I hope you're doing okay with all the time on your hands, I know you're not a big tv person. Feel less woozy soon and here's the positive vibe to get those mouth soars gone and your levels up! Mmmmmmmmmmmmmm (vibes) mmmmmmm

Anonymous said...

Ronni,
You are an inspiration.
nan

Anonymous said...

Ronni - I am thinking about you constantly. I am glad you are right where you should be and that Ben came to visit.
I am glad you are still writing too. Typos be damned!

Dr Pushkar said...

I am a doctor in india. Just heard about your blog. I salute you. You are doing a great job sharing your experiences. Nice to see. My hearty wishes and get well soon.

pam said...

Dearest Runni,

i wanted to be the first to ask you to be my Valentine, since i'm sure that you're number One on everyone's list -- but i know that your heart is so great that you can accommodate everyone!
xop

Tom said...

Hi Ronni!
Aha! My first attempt at responding to your blogs. Well, right off the bat, this isn't exactly a response but a warm Happy Valentine's greeting!
It's sent with love, hugs and kisses.
Love,
Tommy

Mikha'el said...

Ronni,
Hope all is well and look forward to updates. Take care and know many others are pulling for you

Suzanne Strempek Shea said...

Sending many hugs, Ronnie.
Suzanne

Medgadget said...

Ronni,

Greetings, I hope your condition improves and you get released from the hospital soon.
I've been trying to contact you about your prize from Medgadget for the blog awards. The comments seem to be the only place I can reach you.
Basically the story is that Palm discontinued all their PDA's and we can't find any replacements. So, would you be interested in an iPod nano, all pretty and engraved? If so, please let me know the color you'd like. Otherwise, if you already have one, we can send you the equivalent in cash for you to do as you wish.

Thanks, and I hope to hear from you soon.

Gene Ostrovsky
Medgadget

One Mother with Cancer said...

I've been following your blog very close lately. I'm due for my first (hopefully last) Bone Marrow Transplant next month. I hope everything starts to get easier for you soon.

Anonymous said...

you don't have to write a thing; know you are loved!
-Lea

Tommy said...

Diane has written us that you are back in your room. How great is that...
By the way, she is a wonderful sister.
Ronni, we love you. We are with you every step of the way.
Love,
Tommy

Terri said...

Glad to hear you are back in your room!!! Thanks to Tommy for the info.

Michele A said...

Hi Ronni - started following your blog after learning of it on medgadget...especially timely since I had just had surgery to remove a "neoplasm of uncertian behavior" - LOL. Anywho, I am worried that you have not had anything better to do then to post on your progress...maybe one of your dear friends, kids or? could give us an update, even if it is in the comment section. I know that there are so many people out there cheering you on!

rhc39@aol.com said...

Have not read anything since last post i have been
faithfully following your progress since your first event. You have been very encouraging as my son had AML, and the Chemo Therapy treatment and relapsed having to have a Stem Cell Transplant. You have been my guiding light as your illness has preceded my son's. I pray that you are all right. Please let us know all is well.

God Bless!

RHC39@aol.com

joe said...

would really like to know how Ronnie is doin. Been checking this blog for weeks. Please someone let her readers know how she's doing.

Nancy said...

Ronni, You are such an inspiration to so many!!! Thank you for continuing to blog. We appreciate the posts and we know how hard it is to blog just days following transplant. Keep fighting girl!!! Love, Nancy

Mikha'el said...

Since it's been a while since Ronni has posted, does anyone know a status update on her situation?

lisa calkins said...

Dear Ronni, Been thinking of you lately. Hope things are getting better each & every day. Keep your spirits up. Spring is on its way. Lisa