Jamuary 30, 2008 Update
Dear Fods,
Sorry for the delay in posting and keeping you up to date. We have been very busy. I was discharged on Tuesday January 15th, but the dizzies and hearing loss have continued to this day. I have visited with the ENT specialist who is not encouraging with the hearing. He remains of the view that the hearing loss will be permanent. I hope not! The dizzies have made even simple movement a chore.
On Friday January 18th, we had an emergency trip to the ER -- yes the boys were thrilled -- because one of my pupils was "blown". With the "bleed" in my brain, I was concerned that something was seriously wrong. Off we trundled to the HUP ER on a Friday night. While we were taken to a room quickly, and they were concerned about my pupils, the wait is a wait on a Friday night. I had a CAT scan within 10 minutes but they could not explain why my pupil was dilated. The neurologist came in and examined me and again, could find no other neuro deficits -- and then he vanished for about an hour or so. When he returned with a message from a friend on his blackberry, he asked me if I had a scopolamine patch on -- which I had told everyone before even coming down which helps with the dizziness and nausea -- and then told me that if I had touched the patch and then my eye -- it could cause my eye to dilate. Oh well, no more of those patches. We got home around 2:00 AM and the boys had a beer or two!
On Friday January 25th, I met with Heather and Dr. Porter. Despite all of the above, my counts have remained remarkably high. Today platelets are 62K, wbc is 5, hgb 12! These are the best counts in two years -- and wouldn't you know that I can't hear or walk because of this new problem!
When Heather and Dr. Porter saw me last week and how hard it is for me to get around, they decided that I could start the next round of dacogen at home with Penn Home Infusion. While they have never done this before, so far it has been so much better for me and everyone of my caregivers. Just mild nausea and tiredness -- plus my dizzies and deafness -- which is great I am bumbling around the house with my arms extended outward for balance like ET!
The dacogen is working and Dr. Porter is optimistic, but of course we shall see.
Thanks for all the cards, blogs and calls -- they mean so much to me. I am sorry that I have not returned calls but it is hard to talk on the phone because of my ears.
I love you all.
Debbie
posted by Joe @ 7:27 PM
9 Comments:
Hi Debbie: Have been checking every day for an update and was glad to see one today. Sorry to hear about the trip to the emergency room, but glad the medicine is working and your counts are higher than before. You must be getting to be a real pro on all this medical stuff - it is all greek to me. Hope the hearing comes back and the dizziness subsides and you are feeling better real soon. Thoughts and prayers are with you as always. Love Shelly
Debbie;
You are a walking (stumbling) living, breathing miracle and one of my all time heros. Compared to what you have been through....John Wayne looks like a sissy!
Love,
Mike Naughton
Hi Debbie,
I check all the time for updates so was delighted to see one this morning. Sam is off to school (after a mad dash - both of us decided to turn our alarms off for some reason this morning!). My Australian Shepperd Penny is sitting at the door looking at squirrels ready to herd them! and I'm enjoying the morning sky shilotte a ine of Pine trees. I feel blessed this morning, and after reading your blog feel like I've read an eposide of the Bionic Woman... how do you do it!!! You are amazing. I am thrilled about your counts..... and I'm optimistic that the dizziness will stop. I know this is a stupid suggestion as you have probably done this already, but have you tried the motion sickness braclets! I know they really have worked for some friends. Also smelling fresh ginger relives nausea..... that worked for Linda.
Catch a big hug.... hoping we can talk / see each other real soon... lots of love Visitor Alison
Hi Debbie,
Great to hear from you.I'm sorry to read your dizziness and hearing loss is still with you. Make sure I sit on the side of your bad ear this summer. I wouldn't want to talk off your good ear! Well, how about those counts! Of course, I have to take your word for it. I really don't know a thing about the medical stuff. Ignorance is bliss. You sound wonderful though. Hopefully you are. If not we are going to have to put a red carpet in front of your house so you can collect your Oscar for "BEST ACTRESS". You sure put me at ease.
Art and I are heading to the Mayan Riviera on sunday for a week. Temp is around 81 each day. I can't wait. Of course, I have to see what I can squeeze into and get packed. I've been so busy with work and babysitting. My daughter-in-law has a "baby bump" now so it feels more real that she's having another baby. I still can't imagine Ethan not getting all of the attention. He is so much fun.
Well,that's long enough. If Joe is reading this he has walked away at least 3 times by now.
Take care,
Betty
Ps. Just checking to see if Mike Naughton is my friend Mike Naughton form Maryland. That would be a coincidence!
The Confession
Matthew goes into a confessional box and says "Bless me father for I have sinned, I have been with a loose woman."
The Priest says "is that you Matthew?"
"Yes father, it is I."
"Who was the woman you were with?"
"I cannot tell you for I do not wish to sully her reputation."
The priest asks "Was it Brenda O'Malley?"
"No father."
"Was it Fiona MacDonald?"
"No father."
"Was it Ann Brown?"
"No father, I cannot tell you."
The priest says "I admire your perseverance but you must atone for your sins. Your penance will be five Our Fathers and four Hail Marys."
Matthew goes back to his pew and his buddy Sean slides over and asks "What did you get?" Matthew replies "I got five Our Fathers, four Hail Marys and three good leads."
Debbie:
As always a smile comes to my face when I can hear your voice via the blog.
I am so glad to hear that you are seeing an improvement of sorts from the Dacogen. A few setbacks though that I imagine really frustrate you.
We are in the midst of a snow storm. Kids were dismissed early from school and tomorrow (Friday) is already canceled. We had a calf on Wednesday. The day started out with a high of 70 and ended at a mere 11 degrees (it as a crazy day weather wise). Poor calf, she was wishing she was still inside her mother. Now she is in the midst of a snow storm. YIKES.
Kids are all well. Aunt Angie had a second week reprieve from a transfusion. I think the Revlimid is working by stretching out her need for a transfusion. That certainly makes her happy. The boys (Mike/Rick) have penciled in a visit for the weekend of the 22nd of February.
Hope you continue to see the improvements. I have to say your counts look great!
Love to all....COD Eileen
Deb, thank you so much for the update.. i am excited and so happy about your counts also.. now this dizziness thing is a pain. when Missy lost her sight, she complained about that alot..must be some way the body reacts to a loss of a sense.. dumb question, but are you able to get a hearing aide eventually? in the meantime, keep your arms outstretched.. don't move too fast or turn to suddenly!
Relax at home, watch the superbowl..root for the patriots, amd enjoy all the commercials about cialis! I swear..if i have to hear again how things last more than 4 hours ... don't you feel like calling the company and saying, " and you call this a problem!?"
take care of yourself debbie..we are all so proud of you! love , mdf
Hi Debbie-
I was up very early this morning with Hagan and I thought that since he'd gone back to sleep, I'd write you a little letter. Hagan didn't sleep much last night b/c mom was tired yesterday and wanted to nap. We took a nap together from 5-7pm and let me tell you, I'll never do that again! He slept terrible last night! Sorry to hear about all your latest developments. Being "DD" all the time can't be fun. But at least now you're able to be at home for the treatments. I was delighted to hear that your counts are better. We went to WV to visit my parents this past weekend and I think my mom kissed off every inch of Hagan's face!!! My parents are coming next weekend to babysit Hagan so Drew and I can go to his company's Winter Event. It's a black-tie affair downtown at the National Building Museum. Quite an affair each year. We had pics made of Hagan last week and they are ADORABLE! They'll come in med-Feb, so check your mail! Hope your DD goes away soon (or at least becomes less severe). Our prayers are with you always.
Love,
Jenn Kelleher
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