Getting A Little Concerned Down Here
Dear Fod's,
Hey everybody. I am still too weak to write or use the computer. I wait for Joe to come down and then he reads the blogs to me and we post a new blog together. Wish I had better news, but the severe sore throat and esophagitis persist and I can only swallow a few bites of pudding or soup, so the TPN continues. My blood sugars were a little elevated today because of the TPN and they gave me insulin to counteract it. A speech pathologist came to see me today and she assured me that when all of the swelling goes away, I will be able to swallow effectively again.
ANC is 0; the WBC <0.1 and this is getting to be a worry, because my marrow should be recovering by now, engrafting of the donor cells should be taking place and my numbers should be improving by now. So I needed 2 more units of blood and 1 package of platelets today. I am trying not to get into a panic about this but it is day 25 post stem cell transplant and no white count for 20 days -- we should be seeing something by now. They are going to wait until Monday (easy for them to say) and if we don't have anything going by then, they will have to do a bone marrow biopsy to see what is going on in there. So let's kick up the prayers another notch because I sure am not up for another bone marrow biopsy.
The doctors keep telling me that there is nothing "mini" about this "mini" transplant and I must agree. The isolation doesn't even bother me any more because I am so wiped out that I couldn't deal with company anyhow. So bear with me while I am turning down your offers to visit and turn the phones off, but I am just too tired.
Sleep is becoming a problem at night now too. I am starting to haullcinate at night and I wake myself up talking to people who are not here! I had a conversation last night with someone sitting in the chair -- and of course no one was there. I am aware that I am doing this and quickly reorient myself, but it frightens me none the less. Actually last night, I took comfort in my ghostly visitor. We talked about having a party and how to decorate a house. Of course, what else would it haullcinate about! Had Angelina not taken Brad, perhaps we would have had something else to discuss! But for now it is just back to basics -- food and decorating. This is probably the dilaudid, but the doctors still want me to continue taking it for pain control. They say that so long as I can reorient myself, they are probably just harmless dreams. Funny that I cannot talk to you on the phone all day, because now I am talking to ghosts all night long and am worn out by 6:00 AM. Ha Ha.
Still too tired to respond to the great blogs you are sending, but know that I laugh out loud as Joe reads them to me. The condom joke was a hoot -- who sent that one?
I love you all and we will try to post again tomorrow.
Love to all.
Debbie
posted by Joe @ 5:11 PM
37 Comments:
Dear Debbie,
Oh my goodness you poor poor thing.. I'm going to crank the Hail Marys up. I hope at least your "ghost" visitors are entertaining! It must be a little scarey, you are a trouper to try to make light of it all for us. OK.. enough said for tonight I'm going to have a serious word with his nibs and let him know enough already.. Hell hath no fury like a livid Irish woman! Lots & lots of love Debbie... visitor Alison
Deb, Oh, how I wish I could be of some help to you! Please look me up in your dreams... I am awake all night myself, and would just love to hallucinate with you. PLEEEZE be strong... hang in, even in the toughest moments. I'll kick the prayers up fifty notches...
am thinking of you always. the "thongs" can get full of Toe Jam... it doesn't matter... they will still keep our feet (or wherever else we decide to put them) cool from the hot sand.
love, lizzie
Hi Patty.. we both posted the exact same minute! See how we're all thinking of you.. at any given moment there are several of us praying for you so the phone lines are jammed to Heaven Debbie.
look at that Beth, Patty & Alison in the exact minute.. consider it cranked!
Sorry for posting again, I'm about to sign off before I take a 1.5 hour drive to York PA. Just had a wonderful thought...
Let all FODs/CODs et al... commit to saying a prayer/sending good vibes at the exact same time each day for Debbie...
How does 5pm sound? I know we will all be praying all the time.. but if you set your "Debbie clock" to 5pm each day I'm sure Debbie will feel a huge surge of energy from us all at the same time....
Debbie, I'll make sure I'm thinking of you/praying for you at exactly 5pm every day! God bless...
Deb,
I was hoping that the late responder commment by Dr. Bob would mean maybe today would be the day. But to no avail you are still lying in wait. Not to worry though...haven't they been telling you along what a "special" case you are. I am sure they are just taking there time and by Monday you will escape having the bone marrow test. :)
Visitor Alison...is that 5PM EST...you know those of us in the midwest are an hour earlier. I can do 4PM as well. You also need to give us one of those inspirational questions for us to cheer Deb with...
Quiet day at the Chalks...family dinner, prayer for Deb to start the meal.
Mom and I will be heading to Clarksville TN in a month for Tammy's (Bev and Mike's daughter)wedding/reception. It will be nice to meet this fella and to be with family.
Rest up...hope your dreams stay within reason....LOVE to all....COD Eileen
Dear Deb and Joe;
OH how I feel your pain. God Bless
you Debbie .
Alison came up with a goodie that extra prayers from all FOB's and COD's and families all at 5PM every day.
Love you Deb and Joe I haven't been doing too much going to the grandkids football games. I really am enjoying my Grandkids
they really are good to me and i respect them.
I am still going to the art class
at the Senior Center I made 5 Paintings, and I love it. I am also line dancing.I am still taking classes.
Debbie dont worry about us you take care of yourself if you cant't blog,thats OK.
Love You all Dearly
BIG HUGS
Your Aunt Angie
Count me in for the 5pm prayers/good vibes...I'll even go outside and stand facing southeast. Although I have to say that I already say a little prayer every time I think of Deb which is at least every hour!!! Deb, I don't know what else to say. I'm sure you are discouraged and scared, and I wish I could take that all away for you. I just know you're going to come out on top of this...just stay strong a little longer. like Patty said, even though you're not talking to us, we are all still here. And we certainly understand your weakness and fatigue. For crying out loud...DON'T WORRY ABOUT US! Focus on getting yourself strong. We are all fine, just get a little testy when we're worried.
So you just rest...those white buggers will come soon.
BIG HUGS xoxoxoxo, Mo
PS to COD Eileen,
Are you going to take "The Last Train to Clarksville"?....GROAN...I couldn't resist...now, how many Monkees fans do we have out there?
Debbie & Joe,
We share in your disappointment that there is no sign of a wbc, & hope that there will be no need for another bone marrow biopsy. It's also disapponting that the meds have no apparent solution to the nasty side effects such as mucousitis, sore throat, etc. You have been a "real trooper" throughout this ordeal & we can but hope that something positive occurs soon - like right now!! It was a quiet day for us here today & the only item out of the ordinary was Dad getting a new crown inserted that he broke weeks ago while biting a baked tostito. Mom is busy knitting a sweater for Suzanne's grand-daughter with the wool that she received from Mrs. Campbell's assortment of knitting wool. You remain in our thoughts & prayers. Love, Mom & Dad
Debbie - Seeing "special" visitors? You're in good company. Remember the old movie "Harvey" staring Jimmy Stewart. Harvey was a 6' invisible talking rabbit. He followed Jimmy around all day long. It's one of my favorite childhood movies.
Hang in there.... I'm saying my "public" prayers for you.
xoxo Donna Tea Bags
Dear Debbie -
Some people make the world special by just being in it.
That's you.
Deb,
I'm so sorry that the counts aren't up yet, but after Rick's threats, I'm sure they'll be here soon. Consider my prayers at full throttle! I hope you have a better night tonight and a better day tomorrow. Our thoughts and prayers are with you constantly.
Love,
Jeanne
Count me in for the 5 P.M. prayers. not to mention all the other hours( Mo I 'm right there with you) Debbie girl hang tough, those WBC's will be coming in any day now..you just conserve your energy...if you must hallucinate can you dream up some giant white cells and imagine them flooding into you and beefing you up..that way you get extra protein too..keep up the laughing ,it cures all ills ,remember that fom ICU..everyone we made laugh got better.... I think your friend you conjured up last nite told you the condom joke .. anymore good ones???GOD BLESS YOU..He is with you every minute,and He will get you through this ,keep the faith,stay strong..We love you and are kicking it up to the highest level:)Bev
Let nothing disturb thee-
Let nothing dismay thee-
All things pass-
God never changes-
Patience attains all that it strives for.
Sr Teresa De Cepeda
Hang in there Deb. I remember when I had my appendix surgery last year they had given me IV dilaudid for my pain control. I felt like I was having outbody experiences and low blood pressure. I can only imagine what it must feel like for you. My throat hurts just hearing about yours. I am really praying hard for you. carter survived the first couple days of 1st grade. he comes home so much older then when I leave him in the morning. He started guitar lessons tonight. Lets just say the instructor wants him to come a half hour early to the class for 1:1 time. He doesn't know which hand to use to play. Carter liked it but says he wishes he could be standing to play instead of sitting. Watch out Elvis, here comes Carter!! Well time to bed and to say some prayers for you ... Jenny
2pm, that is the time i will kick up the extra prayers.... good things are worth waiting for deb, easy to say, and know you are definetely going through the wringer! All people arent the same and i don't think you can actually pinpoint when some things will happen!!! Keep strong.. sleep alot and let your body build up strength!!We're with you deb.. lots of love,,mdf
Well at least your hallucinated conversations are pleasant ones! We hope this all passes sooner than later- our thoughts and prayers are kicked up to a higher level- but plenty of room left to climb higher! Hopefully the memo from Rick will scare the wbcs into an appearance!
All our love,
The Booth Family
deb, thinking of you always, your wbc's will rebound, they are on their own schedule. nancy b. sends her best to you. xoxokathi
Oh my gosh - Mo I had a dream about the Monkees last night! I saw them in concert when I was in grade school and had the hugest crush on Davie Jones.
Alison, I like the idea of praying for mom at 5pm. That's usually the bewitching hour at my house - when both kids have their little meltdowns together. A prayer would be a good diversion for all of us. Christian has started reciting the Our Father and Hail Mary out loud and makes it into a song. He doesn't understand what he's saying yet but it sure is cute.
Speaking of Christian, mom I have got to tell you what he has done the last few days. At least it will be documented somewhere as you know I'm not the best at keeping his baby book updated.
Whenever he falls, he's gotten so used to hearing us say, "You OK?" he usually will fall down and say, "You OK Mommy?" He's the one that fell, not me. He's been doing this for a month now. A few days ago he fell down and I said nothing and he blurted out, "I'm OK mommy!"
Today I asked him where his shoes were, as I always do in an attempt to distract him long enough to finish a task before we're headed out the door. Normally he doesn't respond but today he said, "I don't know!"
When Emma is upset, Christian is an alarm he used to say - "Emma Emma Emma!" until I responded. Now he reacts with "Emma's crying!" "Emma's sad!" "Emma's hungry!"
Before dinner I was setting the table and Christian was demanding the TV be turned on. He still calls the TV "TB." So you can imagine him screaming "TB!" "TB!" "TB!" over and over again. I calmly said, "No more TV today Christian." He looked at me and screamed with a deep voice "QUIET!" Walid and I had to hide our faces and put him in timeout!
Now when he emerges from a timeout he comes up to me and hugs my leg and says, "I'm sorry mommy."
Emma is wearing 6-12 months clothes now and tried her first teething biscuit today. Life is bliss as long as she can eat something every two hours.
I re-read some of the success stories today and there are a lot of folks out there that did not have WBCs return until after day 30. Also, the BMB at day 30 seems to be standard procedure. It is the best way to measure your engraftment progress. Just because you're at 0 doesn't mean engraftment hasn't started - according to those that went through it and are doing well and sharing their stories. So rest up and keep the Faith. This to shall pass. I wish we could each take a little bit of the burden for you. I know you're strong enough to make it through this in one piece. I love you!
I will see you soon!
Love,
Jessie
Mo...are you kidding...a train..this is the Midwest honey...it's only about 4.5 hours from here with not a lot in between but funny how the whole Monkee thing has evolved. Just today at work someone was talking about someone who auditioned for the Monkees who is with another band and then he referred a friend to audition for the Monkees. You may know all the names of the guys I am referring to...I don't. I'll have to ask my source. Anyway funny how we all brought that up.
And Jess...thanks for your research on the engraftment response...that put a smile on my face.
Rick...you and Joe have similar sense of humor. You have "kicked it up a notch" while Deb is not feeling so well and he has little to embellish about.
Goodnight all...COD Eileen :)
I Am Healed
In communion with God, I am healed wholly and completely.
Dear God, I turn to Your soothing, healing presence in moments of prayer and meditation. With every breath I take in, I deepen my experience of Your presence, and with every breath I release, I let go of any sense of separation from You.
In communion with You, I am healed emotionally, mentally, and physically. Despite any outer symptom, I know a healing is taking place because I am created by You and You are here with me now.
I think of others with compassion and love, knowing that Your healing presence is active within them also. I breathe out and release any concerns I may have held. I breathe in and affirm their health and well-being, their wholeness and strength.
"Peace, peace, to the far and the near, says the Lord; and I will heal them." --Isaiah 57:19
hey Chiz-
Just checking in this morning to let you know I love you and say hello. (Hi Mikey, talked to your dad this am and know you are going to be doing blog reading duty tonight)
I know this no WBC's is making you a little frantic but remember the wisdom of Dr Bob when he says that you are both late bloomers when it comes to your treatment responses.
Reminds me of that song by the Supremes. (Mikey please sing these next few lines to the tune of you Can't Hurry Love):
I need White cells
To ease my mind
I need to find, find
Some cells to call mine
But mama said:
"You can't hurry cells.
No, you just have to wait "
She said, "Cells don't come easy,
It's a game of give and take."
Now, I am going to be singing this song all day - hope all you FOD's, ROD's, COD's and GOD's are going to be singing it too.
Yesterday was a big day - Mr Hal and I enjoyed our 31st anniversary. (He was in Kansas, I was in New Jersey and there you have the secret to our long marriage - hah! We're apart most of the time!) I did recieve a dozen red roses (they are dreamy) and we are planning on meeting at the Four Seasons Friday night when he comes in from the airport for dinner. Would love to see you honey lamb. I'll keep checking in to see if you're up to a quick vs.
Talked to Ms. Tessa yesterday were your ears burning??? We love you honey and are sending you good viberamas.
OAN, thought you'd enjoy this. Talked to my S-I-L Karen this week. Can you believe that Little Joe started preschool this week?
Karen said she would have liked to tell me how his first day went but when Mitch picked him up, Joe came right home and took a nap. And he was still sleeping at 8pm when I called! It must have been a big day for him.
Well, honey I will check in later (probably 100000 times). Know that I love you and am praying for you. I will also be joining the 5pm Cosmo Prayer Group.
Love you sweetie pie! K
Dear Debbie,
Cathy and I pray constantly that you have some relief from your pain and discomfort. I am literally sitting hear crying at work, because I empathize with your suffering so.I can only say that when I went through my ordeal, I simply prayed to the good Lord to give me strength and he answered my prayers as he has always done. On a lighter note, (as he wipes his eyes) I can,t tell you the wierd hallucinations I had from the Morphine pump. That is reaaly good Sh.....! Cathy of course reminded me that I was a very wierd person so she was not surprised I would be seeing and experiencing such strange things. One memory in particular comes to mind of a very large snake curled up and nesting around my curtin rod on the window. I experienced this one in the middle of the night as well. That is a mild example. The Indian medicine man performing some ritual complete with feathers, smoke, and a huge owl tethered to his wrist had to be the high light of my visions. :) Very wierd!! :) "Bye the Bye" If you see Angelina tell her Artie Chadwick thinks she's HOT!!!!!! in a rough kind of way!! :) God grant you peace. We love you!
Artie and Cathy
Good morning sunshine!
It's beautiful outside today - sunny and warm with a soft breeze. I'm sure after all that rain that your WBC's are getting ready to bloom today. It's like planting daisy seeds in the spring and waiting for the flowers to sprout.
Soon Stefie and I will be going out to look for her wedding gown. My Jackie O dress will have to wait until I slim down. And by the way, JCrew sold out of my favorite dress before I could slim down. Raspberries!!!
Joan is off to see the ND/Penn State game this Thursday. She and Meghan K. are flying out to Chicago. She's prepared for whoever wins the game with her ND hat and PS shirt.
Janine has a new position with TEVA and is doing well.
KMClay I loved your song and will be humming it all day.
Debbie - rest up and let the WBC wash over you.
xoxo Donna Tea Bags
Mrs Teklits,
Hope this morning is a new start, and you are beginning to turn the corner and feel a little better. Lots of prayers continously heading your way.
Love Always
Alli
DEar Deb,
You're always in my thoughts and prayers, hang in there, I know things will get better soon. We're all praying extra hard for you, and I'm sure that God will answer our prayers, hopefully real soon! WE all love you, Mary
Okay, back for my 50000th time this morning. Just saw this word of the day over at dictionary.com and thought it described our tardy wbc's very well, Chizzie:
(Okay Mikey, you ready to put your lips around this one?)
Word of the Day for Thursday, September 7, 2006
pervicacious \puhr-vih-KAY-shuhs\, adjective:
Refusing to change one's ideas, behavior, etc.; stubborn; obstinate.
As in: These WBC's of Debbie are the most pervicacious wbc's I have ever seen!!!!
Hi Deb,
Hope today has been the first of what will be only good days from now on. I was gonna write the lyrics of that song...Nothing but blue skies from now on...but nothing is gonna top "You can't hurry cells" by the inimitable Ms. K Mclay....THAT was so clever and it's already embedded in my brain.Happy 31st Anniversary Kris and Hal, and enjoy your weekend at the Four Seasons...sounds divine. But haven't aLL the FODs been so clever?
Beth, that Dionne Warwick song is one of my faves...always makes me think of My Best Friends Wedding, when the whole rehearsal party is singing it, led by Rupert Everett(who is so Cary Grant dashing)and all the wait staff are waving those goofy lobster mitts. I love that scene.
And Eileen...GODs...you crack me up.
Jenny, I never knew you had an appy last year...that must've been fun w/ 2 little ones. Carter sounds adorable...as does the pirate-loving Harrison...whenever I picture Noah from now on, he will have an eye patch, peg leg and parrot on his shoulder, or maybe that should be a dove? But Mr. C takes the cake, Jess. QUIET was also my favorite. I too am so appreciative that you shared those success stories w/ us...it eases my mind an awful lot.
Oh and Kris, what does OAN stand for?
Hey Hey, The Monkees are:
1.Mike Nesbitt-whose mother invented white-out(this is true, not an urban legend)
2.Mickey Dolenz-whom I had my crush on...btw Jess, how old were these guys when you saw them in concert???
3.Peter Tork-the one I always thought of as being silly and goofy.
4.Davy Jones-the dreamiest and cutest monkey, and the one "Marcia, Marcia, Marcia" Brady got to go to the dance with.
So you can see how I spent the 60's...that's right...in front of the boob tube!
Well, honey, can't wait to read tonights post. Hope you're resting up as I write this. Did you ever ask about the Biotene mouthwash and toothpaste? It may be worth a shot? I'll write later tonight after your post...love you, Mo
PS, that was very weird that not only once, but twice vis.Al and Patty wrote at the exact same time!!!
Deb, I just pulled out my count chart from Seattle to see how long I had low counts. From 3/18 to 4/7 (that's 20 days), my ANC stayed below 1.0. On 4/8, it went to 1.06.
My white count on 3/18 was .52. It stayed below 1.0 until 4/6 when it went to 1.26. (19 days).
It takes a long time and although I'm not an expert on the mini, that may take longer than mine, which was the myeloablative.
As far as the bone marrow biopsy, I've had so many of those, my butt is dimpled. I always took Ativan and they will give you IV pain medicine, the type escapes my memory now because I tried all of them, but you know.
HUP is very conservative. When in question, do a biopsy. The day of the biopsy, your counts will improve. But they need to see what's going on in there.
This really stinks, I know. All the waiting and feeling miserable.
Try not to worry, it does no good.
It's out of your hands any way.
It's in God's hands and it always has been.
Sending prayers and love,
Linda M
AN INTERESTING BUT NOT TOO SURPRISING STUDY....
A study conducted by UCLA's Department of Psychiatry has revealed that the kind of face a woman finds attractive on a man can differ depending on where she is in her menstrual cycle.
For example: If she is ovulating, she is attracted to men with rugged and masculine features.
However, if she is menstruating or menopausal, she tends to be more attracted to a man with a spear lodged in his chest and tape over his mouth while he is on fire.
Dearest Debbie, FODs, CODS, GODs, KODs et al....
Boy what a powerful, funny creative, loving incredible group of people we have here. I can only imagine how much power we are all going to have at 5pm today (thats East coast Time COD Eileen. So just think Debbie at 5pm people will be "dialling in" to heaven from Dublin Ireland (10pm local time) to California (3pm local time) and everywhere in between... "Hi Gabriel you better go get the boss, we have a crisis the switchboard is smoking with calls about Debbie and the WBCs.. Peter turn down the radio I'm sick of hearing that song.. "You can't hurry WBC's" isn't there any other song to play!"...
Soon the boss man will know for sure that he needs to get the appropriate teamsters rolling... 5pm Debbie, breath slowly and think of all of us just as we will all be thinking of you.. every day at 5pm... we're going to be the strongest group of friends & family ever! lots of love visitor Alison.
Dear Deb,
I have been in Cape May for the past week and missed your postings. I am sad to hear that you are having such a tough time at the moment. I made it to the beach one whole afternoon. Otherwise there was rain. So what do you do when there is rain while on vacation (SHOP). Mom and I hit any store that was open I think. We did have a nice time. Spent lots of money. I actually had time to read a book,such a novelty. Trixie wanted nothing to do with the rain. Had to literally pick her up to get her out the door for a potty break, then she would just stand there and whimper to come back in. I was holding an umbrella over her while I was in the rain. This was the only way she would go. One spoiled rotten little dog.
I will be there tonight and every nite at 5pm with the prayers, note that you are in my prayers constantly. I like the idea of knocking on the door in unison though.
Take care and picture those white cells marching one by one to their appointed target.
Love, hugs, and prayers.
Jean
Dear Debbie,
I just got back from a visit to the Grotto, lighting a "unity" candle signifying the beginning of our 5pm daily "FOD ROD COD GOD" worldwide power prayer session.
There is strength in numbers and may you feel that strength today at 5pm.
God Bless you and may Our Lady keep watch over you. xoxoxoxoxoxoxoxoxox
much love, tessa
Hey Deb:
I can't wait to meet these crazy people you have united through this blog....I know it's helping you but it is also helping me not feel so helpless.
Quiet day here in Missouri. Dave's on call and at the hospital, Mere is working and both boys are practicing.
That means no family dinner since we are not all here at once but Bee and I said a prayer as we drove up in the driveway and saw the clock closing in on 4 CST (thanks for the clarification Alison).
I am anxiously waiting to here from you today as always. I want to hear that smile in your voice again.
I'll keep an eye out for another post. Love to all your caregivers and most especially to my bestest cousin....COD Eileen
PS...ok to those guys in Easton and Philly...you run a close second.
Debbie & Joe,
We were absolutely delighted to read about Jessie's research on the blog & hope that some relief from your being tormented by so many things finally comes to a positive closure. Thanks much, Jessie for your input; & we were pleased to read about Christian's antics; sounds like he's "all boy". Emma may need a bit of protection for awhile, but that's where Walid will step in until Emma's big enough to defend herself. We enjoyed reading Rick's blog admonishing the "absent" wbc count, but at this stage, we'll accept help from any & all comers. We hope that you had a better day, & you remain in our thoughts & prayers. Love, Mom & Dad
Debbie:
You are in my prayers every day! You have been so strong through your adventure, please continue to keep fighting. Know that God is with you each day.
Carolyn Stuart
It's just about 8 p.m. and I just wanted to say good night.
Rest and heal. We all want to see the Queen of Tekits come home to keep the home fires burning.
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