DAY 34..AND STILL WAITING
My dearest Fods, Cods, and whats a Rod again?,
Mikey's here typing for me and he just read me the blogs. Im still too weak to even carry the computer. The pain symptoms continue and fevers of 104 for 16 hours straight!!! Still very bloated, running to the bathroom every hour, just to wee-wee a few drops. Now I have a new rash over my face, chest, and back. So I had a very busy day. They finally got the infectious disease guys on the case and they seem to think that even though the cat scan was negative, you won't see an inflammatory site because there is no white count to see one. They think there is a small cyst in my liver that may be abcessed. Im going down tomorrow for a liver nuclear test, to see if they can highlight my liver. The doc said that would account for my constant nausea, bloating, and abdominal pain. So they restarted me on gentamycin, which is a very strong antibiotic which can be damaging to the kidney's. The doctors will be keeping a very close eye on this. Now on to the big news
As i told you yesterday, the donor is willing to donate cells, which will arrive on the 27th of sept. Dr. Porter feels that the reason this first stem cell was likely rejected because i was not immunosuppressed enough. I beg to differ!! So he would like to give me several days of more chemo and one day of full radiation before i recieve the new donor cells. I don't fully understand this, the reason i feel so crappy is because i am so immunosuppressed. I cant imagine being even more immunosuppressed. Iv agreed to the chemo but have to think about the radiation. This means I will be in the hospital another 6 more weeks. That is just too much for me to think about sitting in this room for another 42 days. I said only half jokingly that i wanted to sign myself out AMA. As he pointed out that the six antiobiotics, TPN, Tac, and slew of other IV goodies with no white count, would surely do me in. So I'm stuck between a rock and a hard place. Meanwhile other transplant patients that were in our class have gone home, and the girl next door who was only 32 sailed through her conventional transplant. So here I remain. Still not able to eat due to constant nausea but i am able to take pills and drink fluids.
The lighter idea for 5 o clock prayer time was a great idea, but please don't anyone do while there driving or filling up their gas tank. (Esp you, Ms Allison). I love you guys so much for your humor and kind and gentle words. Still not smiling, but Iv got myself into thinking one day at a time. Who keeps telling those jokes??? Mo, I sure hope Joe is doing better and will be out of the hospital soon. You must be sick with worry with Joe and Bob being home alone. Although he sounds like he is pretty stable these days. Thanks for all the comments on the grandkids, aren't they so beautiful. I do picture them foremost in my mind when i list things to live for and fight for. Thank you for continued loyal blogging prayers and cards that you keep sending my way. I LOVE YOU I LOVE YOU I LOVE YOU.
Debbie
posted by Joe @ 6:36 PM
15 Comments:
Debbie,
I'm not sure what the Rod is but I want to add a new one for you. This is from your Cod's and Aod's (Aunts of Debbie's) up in Easton.
We are all hoping and praying that this infection can be cleared up so there are no more fevers and the pain and bloating goes away. How is the sore throat? Hopefully you will be able to eat solids soon. We are doing okay up here. Mom and Dad and I were down to Atlantic City for Labor Day Monday, Tuesday and Wednesday. I came home only losing about $40.00. Mom and Dad on the other hand were not as lucky. I'm still waiting for Nan to set a date for her knee surgery. Bobby, Dodi and Tori are in their new house, but we have not seen it yet. Nan and Ro did stop over for a short time. Aunt Lindy is still taking her walks K-mart. I can't believe how big those Grandkids are getting. The Halloween pictures were great. Well, I feel like I'm rambling on. We all hope you feel better soon. You keep up the fight. We all send our love to you.
Cods' & Aod's in Easton
Hey Debbie....I am thinking about you so much everyday....Keep thinking positive! I know you will make it threw this with flying colors. You deserve it! Luv Ya Mere
A man walks into a very high tech bar and notices that the bartender is a robot. The robot bartender snaps to attention and says to the man " What can I serve you sir? The man thinks for a minute and says, "I'd like a Cosmo please" The robot clicks a few times and mixes up what the man thought was a perfect Cosmo! Then the Robot asks the man, " Sir what is your IQ? The man thinks for a minute, and says "about 164" Then the robot launches into a conversation about the theory of relativity, the latest advances in medicine, and interstellar space travel. The man was impressed so he goes out and decides to go back in and take another seat. Again the robot approaches, asks for his order, mixes up another Perfect Cosmo and asks the man "Sir what is your IQ"?
The man thinks again and says "Oh about 100" The robot launches into a conversation about NASCAR, the latest basketball scores and how the Phillies will end up this year. The man goes out and decides to try it one more time. He comes back in chooses a new seat, orders and gets the Perfect Cosmo. The robot asks again " Sir, what is your IQ? This time the mans says, Duh, Oh about 50. This time the robot clicks and says very slowly " S-o, a-r-e y-o-u-r p-e-o-p-l-e g-o-i-n-g t-o n-o-m-i-n-a-t-e H-i-l-l-a-r-y t-h-i-s Y-e-a-r?
Hey Deb,
It's been awhile.
I read the blog everyday but sometimes I am mentally exhausted when I'm done - trying to understand everything. I have been busy with Sarah lately - she had a "little adjustment problem" that required my dropping everything, driving to WV right from work and securing various services for her. You get the picture. I cannot talk about the whole thing yet - it's still pretty raw.
But David is in love with law school. He is doing all sorts of extra things. When we talk to him (only on Sundays) he sounds so excited about things. I guess he has found his passion.
Megan is in L.A. working at a clinic and helping with some sort of research that they are conducting on same sex violence. She loves the weather and wants to live out there after she graduates. She is learning to skateboard! And she got her hair colored red.
I think of you and try to get to the store for cards every day. Something always gets in the way.
I am so sorry that you are so sick. How do you keep your sense of humor?
Miss you and think about you all the time.
BIG HUG.
Susan
dear, darling,courageous deb,
good, i'm glad you love us x3 because guess what? WE LOVE YOU, LOVE YOU, LOVE YOU first! I am glad you have a few good sucess stories under your belt as well. reinforcement makes everything a bit more palatable. mary was asking for you tonight at dinner. it was just the two of us and we had a great talk. she wanted me to tell you hello. deb, i remember when i was down in the dumps a long time ago and my friend who is a monk [we ripped woolworths off together] told me something that i have long treasured. he said that we can't always put things on our time schedule. he said it far more eloquently and tied religion into it, but i know you will be okay. it will happen in your own time frame. stay strong, love you x4586
Dear Deb:
I can't imagine what you are going through. But, you have to hang in there for the next transplant. What's a few more weeks of he**, when you will have a very long healthy lifetime to enjoy after this?? You will be cured!!!!
Keep focusing on the grand kids, your beach house and all your loving friends and family.
WE LOVE YOU TOO!!!
Hi Debbie. It is 10:30 at night and I just got through some of my homework from my college courses I am taking - only 4 more to go and then I can finally gradutate at the grand old age of 52 - but enough with me - just wanted to catch up and see how you were doing - Glad to hear a new transplant is on the way - hopefully this one will be the good one - Keep up that spirit - I know it is hard some days - but we all know you can do it. You are a real champ. Don't get discouraged - You will make it through this. Love Shelly
Hey,Girlfriend, It's Lee:
There's story of the young boy & girl playing in the sandbox. The boy shows the girl his private part and says, "Mine is better than yours." The girl shows her privates & responds, "My mother says with "this", I can get as many of "them" as I want."
My response to your suffering is "THIS SUCKS & I can't rescue you as you would try to do for me." You were always there for us when we needed you.. with wisdom, encouragement, energy, & mostly, love. When I think of you, I remember how "beautiful" you make me feel when I don't feel so. Your smile still shines for all of us. Thank you, Thank you, Thank you, Lee-Lee
Dear Debbie,
Haven't had a chance to read other comments.. arrived in NY a couple of hours ago and have been catching up with my best buddie Pauline (we worked together many moons ago in Ireland and shared raising children, work, hubbys, divorces..like you and the FODs).. Just wanted to let you know that I'm thinking of you and didn't light a match while driving.. as it turns out I was still with my nephew & nieces and got into a panic about what "light" I could use... so... I pressed "The Adventurer" action figure and he lit up and so I started singing and well.. the kids joined seemed to enjoy Auntie Alisons antics today!!! Tomorrow I will be on the River Hudson at 5pm... I'll be on strike for u!!!
So very very sorry to read the situation you are in.. it just is not fair.. today I've had several conversations with friends & family about the "unfairness" of the health odds.... and each conversation somehow ended in a funny well who the heck cares anyway! mode...
So Debbie, feck the fecking lot of it... for soon it will all be fecking history... and you will be enjoying a HUGE party with all of us....
Sending every good vibe, prayer thought your way.. please, Debbie, give it one more day... EVERYDAY...
lots of love visitor Alison
Chizzie, Chizzie, Chizzie-
Continuing to pray for you honey lamb. Thank goodness for Linda's post the other day - it's so great to hear others tell of how they made it through a similar situation and are doing swell now. Hang onto that thought honey. It will happen for you, I know it will.
Prayers up for you yesterday as I was checking in the oh-so trendy Hotel George here in DC. Honey, you would love this place... It's a very nice little boutique hotel with a very chi-chi bar and restaurant. Lots of cutie pie waiters to flirt with too - I know how you like that.
Anywho at 5pm yesterday - I was heading into DC on Route 50 in rush hour traffic with no dang lighter in my purse??? What the feck? The emergency lighter in the glove box wasn't working, and there was no light up action figure around so I ended up singing "This little light of mine" at the top of my lungs and flashing my headlights to the beat. Boudreau joined in by howling - it was quite moving and spiritual. We didn't care how many dirty looks we got from our fellow travellers!
Today Mr. Hal is spending the day up "on the Hill" with some undersecretary of agriculture and Sen Pat Roberts chief of staff. He's going to be having a big day. Tonight I'm heading over to Walter Reed to do some visiting with our brave soldiers. Just want to say thanks and give some hugs to our guys.
Glad that Jess will be with you this weekend. Sorry I am missing her this trip but we are already thinking about Thanksgiving at your house. And won't we have a LOT to be THANKFUL for? I see Emma Grace sitting on your lap and you spooning mashed potatoes and gravy into her like crazy. (Thanksgiving flashback: Joey and Mikey laughing so hard, mashed potatoes are coming out their noses - remember that boys???)
More later - Joe, Jess, Joey and Mikey, just know that you are in our prayers. Walid thank you for working late this week so Jess can head up to HUP today. Thank goodness Jess has you!
Love you honey. Love you FOD's, ROD's, COD's and AOD's. Don't forget the KOD's! Bev you are hysterical - I love your posts. Allison - you light up our life. All other posters, too. I'm feeling the love. Mo - prayers are with you too. Hope your dad is feeling better and doing okay. Ditto for Dr. Bob.
(Eileen - ding-ding-ding. You are correct! A ROD is a relative of Debbie's)
Hey Deb.... i guess i should have written sooner, but i've been so worried about you and was afraid my words wouldn't be inspirational enough.. you would think with a brother and sister in ministry some of it would rub off on me.. oh well.. Deb. i sure hope you are feeling a smidgen better today.. totally understand how much in the dummps you must feel after 34 days of feeling like crap.. but lets weigh it out ... another 42 out of 365?? and to finally feel better from those next 42???? I know, and totally believe you can do it..and we will all be here every step of the way with you!!!!!
Work has been going well,although interesting .. 5 kids and each one different..we have one that is pretty autistic..no real language but very sweet,one whose mind is involved with computer games "put the bananas in the yellow bucket" repeats it over and over, one who talks without using the first parts of words." an i ave a ookie?" another one who speaks beautifully but has a door compulsion" is that door closing on its own? that door has windows! Don't shut that door! I'll open the door!" and last but not least,my buddy that looks like snoop dogg and i think could teach Alison the proper way to use feck!
They are all great kids and will most likely gett over all their issues as they grow up!
So Deb, i will continue to pray,yell,complain and eat for you until you feel better..just hang tough! Lots of love to you,and your family.. mdf
Debbbbbbbie,
We love you more. We love our Debbie stories....
driving along with Joe and you forgot your shoes and Joe had to go into a Walmart/K-mart and buy you a pair.
feeding the stray cat on the back deck... getting rid of the stray cat before the baby ducks come back in the spring.
Blogger step up to the base and add your stories.
Three old men are sitting on the porch of a retirement home. The first says, "Fellas, I got real problems. I'm seventy years old. Every morning at seven o'clock I get up and I try to urinate. All day long I try to urinate. They give me all kinds of medicine but nothing helps."
The second old man says, "You think you have problems. I'm eighty years old. Every morning at 8:00 I get up and try to move my bowels. I try all day long. They give me all kinds of stuff but nothing helps."
Finally the third old man speaks up, "Fellas: I'm ninety years old. Every morning at 7:00 sharp I urinate. Every morning at 8:00 I move my bowels. Every morning at 9:00 sharp I wake up."
Debbie & Joe,
We thank Mike & all who assist in getting a blog posted regularly, as we are all anxiously awaiting the status of your day. We are sorry to read that the pain, fevers, & now rashes continue to plague you. We must place our faith in the hands of the medical staff when they suspect a cyst in the liver, & let's hope that they can solve this issue & move onto the next area of concern. We certainly share your doubt as to the accuracy of the assessment that you were not adequately immunosuppressed previously, & all must agree that looking forward to another 30 days at HuP is a most difficult decision for you to make. However, there is no way but to look at it "a day at a time". Hang in there, please know that you are always in our thoughts & prayers. On a different topic,this week we will be "Fighting Irish" fans & hope that they paste Michigan worse than they did the Nits. Love, Mom & Dad
Hi Deb,
I just got home a little while ago. Bob and Meg read the posts to me each night, but I'm glad to have access to the computer again. I am so sorry for what you are going through. It tears me apart that you have to bear such anguish, but I have great faith that you will endure and come out on top of this. I too am so thankful your donor is able to give her stem cells again. Wish she could know what a wonderful person she is doing this for.
My Dad is so much better. Turns out he has poly-myalgia rheumatica, and it has probably been brewing for months now...may even be why he took that fall at Toms. He was started on prednisone, and what a difference a few days have made. I haven't seen him look this well in months. He is standing so straight he is taller than me again. He was transferred today to the skilled nursing unit at Mercy(same hospital where I went to school), and will most likely be there for one week to get intensive PT, but he is already able to walk w/o the walker and wanted to take a shower as soon as he got into his room...sounds like another pt I know!!! He and Mary continue to remember you in their prayers, and I saw my cousins(Leo, Mary Lou, Pat and Maureen) and Aunt Fran who also all asked for you and want you to know they also pray for your quick recovery.
Bob's doing fine. Lee and Holly came over twice to take care of his line. Yvonne made him a complete pot roast dinner and Bev made him two different types of pasta for his dinner last night. We are blessed w/ such wonderful friends, and I'm so grateful to them all. Bob just came in and is showing me his 2 new exercises that he got in PT yesterday. I must admit I've been a little lax in that department this week. I'll go do mine after I'm done writing to you.
It sounds like Jess is coming up today. I hope she's there now w/ you and had a smooth, safe trip up. I know what a comfort she is to you. Wish I could do more for you myself, honey girl. Miss you like crazy. I think of you a zillion times a day. If I can do anything for any of the T's this weekend, I am here and ready, willing and able. Please call. Gotta go for the 5pm "conference call" and light-up session. I LOVE, LOVE, LOVE YOU too. Will pray that you feel better soon.
Big hugs and kisses, Mo
XOXOXOXOXOXOXOXOXOXOXOXO
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