Decision Day
Hey everyone, Thank you, Thank you , Thank you for all of the kind words in the blog. Here we are 7 mos. into this and i still can't write an inspirational line. But with all of you inspiring me every day , i just sit back and let your words give me strenghth.. Could you all just stay with me in the hospital? I know I can get through anything with you all holding my hand. Well actually t
there will not be much hand holding for awhile.
I went Penn again today. Honestly i feel like i spend more waking hours there then i do at home. Neede a unit of blood. Probably will need platelets on Fri. I had a long chat with Heather (Dr.Porter's nurse). I've decided to have the mini transplant. It doesn't sound as mini as i would like but i guess I've never been a mini kind of gal. Remember my new diet of 5 scoop hot fudge sundaes 4 times a week? Anyway the difference between a mini and a reg stem cell trans. is they don't "obliterate" your immune system so that it so damaged it will never come back without stm cells they just damage it badly to hopefully kill off all the leukemia. But it sounds like all the same chemo just 2 less days of it. So from what i understand and i don't get it all because after awhile i just stop listening or i will run for the door. My evil twin Kitty kept chanting today "run away, run away!!!If i had not had benedryl (they give you that to prevent a transfusion reaction)and was a little sleepy i may have left. Anyway three kinds of chemo for 7 days. Then they infuse the stem cells and you are monitored very closely. (cardiac monitor and an M.D. present) If i make it through the chemo now comes tje tricky part. Of course your body is saying "what the heck are these new, foreign cells doing in here? And remember i don't have a perfect Match.(we all new that, HA HA). So they give methotrxate which is an old chemo drug which they use to cut down on rejection. They also use 2 anti rejection drugs and steroids to help with rejection.ND A SLEW OF ANTIBIOTICS TO WARD OFF INFEECTION BECAUSE YOU ARE VERY VULNERABLE. I will be in strict isolation with a special ventilation system. And no hand holding Joe will have to resume his ritual head patting. No fresh fruit or veggies for 100 days. I am not allowed out of my room until my counts return to normal which could take as long as 3 or 4 weeks. By that timeI surely will be talking to the wall and chairs because you all know what a yapper i am. There are many more adverse side affects and reactions but kitty said i should not talk about them and so did joey. This should happen in 4 to 6 weeks as soon as they harvest and treat the donor cells and ship them to Penn. Lets hope the donor doesn't get cold feet and that he is a strapping young man and a hunka hunka burnin love with a good memory, since i have none now. Sounds to me like my mom is looking for me to be her donor. Its me Joey again mom needed help typing. So thats it for now, too much to digest for one night. We really cannot thank you enough for your continued love and support, it means the world to us. We will keep you posted as new info comes in. Love Debbie, and Joey
posted by Joe @ 7:31 PM
17 Comments:
Hello everybody,
It's me again! As if i have not written enough! I forgot to thank "the visitor on Rhoades 6" who so kindly offered thier assistance in donating bloood or whatever needed. How very, very kind of you. Really the world needs more people like you. Your prayers and thoughts will be all i need. thank You. Prayers to our beloved Bonnie for continued healing and to Dr. Bob for contiued good counts. May day and Eileen FOD and Cod you are all hoots and Aunt Angie WHAT A GAL!!!!I think i need your stem cells. I could go on and on but didn't i just do that? Thank you all for making me laugha nd share in your daily lives....!!!
Debbie,
You are an amazing lady!!! This sounds rather complex but you have been so strong through this entire ordeal. I imagine your sense of humor will also be helpful. You are in my prayers! May God bless you.
Nancy Allegrezza
Dear Debbie,
I will continue to pray for you and know you have much support, many of us humble "earthlings!" and even more kind spirits are shining around you. Rhoades 6 is a special place and I will be there in spirit holding your hand (even though I should be patting your head, don't think you can catch anything from me thinking I'm holding your hand). Anything you need including stem donations, anything.. just ask. Vistor on Rhoades 6.
p.s. look out for "pennys from heaven"... we found many in our time on Rhoades 6.
Visitor on Rhoades 6.
deb this reminds me of amy's famous line, "we're going to the edge of the wood, load the musket and FIRE!" we are all with you. xoxoxoxoxoxoxo km
Dear Debbie;
God Bless you, you have my heart , and you can have my stem cells, as a matter of fact you can have any part of my body but have to hurry because the clock is ticking.
I miss you , and think of you all the time.
Lately I've been praying to St. Dominick and I dont know why I picked him this time.
My Love To All The Family
BIG HUGS
Your Aunt Angie
Dear Debbie;
God Bless you, you have my heart , and you can have my stem cells, as a matter of fact you can have any part of my body but have to hurry because the clock is ticking.
I miss you , and think of you all the time.
Lately I've been praying to St. Dominick and I dont know why I picked him this time.
My Love To All The Family
BIG HUGS
Your Aunt Angie
Debbie: Your spirit is amazing. Keep the fight going. We are all praying for you. You will make it through this battle and will win the war. You are amazing with your upward spirit. Keep it up. Love Shelly
Deb:
Not sure if you got my voice mail on your cell as I know it is in the car. Your home line was busy...go figure!
Mere got her host family assignment for NASC. They are Janine and Doug Yenk and they live at 530 Cherry Street. She will not be there until the 24th. I am praying that she will get to sneak in a visit with you before the prep phase of the transplant. You mentioned 4-6 weeks. I am hoping that is before they start your teatment, while you are waiting on the donor cells.
Life here is rather quiet...only Colin to look after now. He picked up a Kitten at Walmart the other day. Yet another animal to watch after around here. He named it "Gato" spanish for cat but I call him Frankie...he has blue eyes. Bee is off at camp and of course Mere is leading a group at the state STUCO meeting.
Dave and I tag team, cut the grass and he and Colin are off to the "feed store" for animal feed and other honey-do's. Colin of course is looking for any chance to get behind the wheel. Especially with Dave who says very little. I am hot as heck and after I finish another load of laundry I will check out the pool to relieve the sweat from cutting the grass.
Deb, you are so smart to have such a large audience be witness to your miracles. Looks like #2 is on it's way. You know it takes 3 for sainthood, which Dr. Porter will just have to finally give in to. The 3rd will be that the mini will be the perfect fit to put this disease behind you.
We all love you to pieces.
COD Eileen
Hey Tek.. have you talked to that other dr. at Jefferson... ask him what his opinoin is..we like his replies.. mdf
Debbie & Joe,
Your blog posting was informatively confusing as we didn't understand much of the medical terminology included therein. We do understand that it is a very risky medical procedure perhaps necessitated by the options provided by "Dr. Badnews". We are pulling hard for all of you with our prayers, & sincerely hope that one day that this will be a part of a forgettable distant past. We hope that "Hurricane Schwartz" weather forecast holds true for the shore so that you can relax at your favorite beach. Love, Mom & Dad
Thanks for the update. I'm sorry to hear the specifics of the upcoming treatment, but agree with everyone. You have what it takes to make it and we're all rooting for you!
Enjoy the shore!
Lisa
Love, you, DEB...
thinking of you every second of every day.
Lizzie
Deb, excuse me a minute, im using your blog to write back to eileen..i was never a nurse, just an ward clerk that the nurses would ask me to help with stuff,they taught me alot.. we have 2 emotionally disturbed classes at the school i work at and have seen the police there a few times a year. had one kid..9 yo, run away to the next city. finally turned himself in about 10 pm.. was back to school 3 days later.. i sort of got a look when i asked him if his legs were sort (guess we were suppose to ignore the whole incident.ha) .. im the kindergarden aide in a special ed class, and we have everything from the ed kids to autistic, speech and language. etc..very cute..and i too not only get the summer off, but have worked out the paychecks to be paid for it off also!! When are kids get too rough, they go to another school in town that has locked rooms, psychologists there, etc.. sad that kids get so tough at such a young age..
wish i was closer to help deb for a change.. she always helps everyone else. hard decisions she has to make but im sure she'll make the right one. and with all her great friends out there si feel she'll do just fine.. ttyl..mdf
Hey Chiz-
Just here for a second - I too, have been having trouble with blogger and haven't been able to get online. Glad to see that we are up and running again here - hope you are running around at the shore and enjoying some beach.
We enjoyed the heck out of Kansas City. (Does COD Eileen live near here?) Lots of fun things to see and do there. I went to see an exhibit on the First Ladies at Union Station (on loan from the Smithsonian)- it was quite interesting. Look forward to stopping back in KC on our return.
We drove to Denver on Saturday (viewing a funnel cloud off in the distance), arriving late Sat nite and are staying at a hotel that I think you would like, The Oxford. It 's been totally refurbished with antiques and Victoriana, 400 thread count sheets and Egyptian Cotton towels - yummy. No tea, but they do serve afternoon sherry for all you sherry heads out there.
It's been nice and hot in Denver since we arrived but hey, it's a dry heat! We went up to the Rocky Mountain National Park yesterday. Had a picnic and enjoyed the scenery. Spectacular! On a wildlife note: we saw pronghorn antelope, a huge box turtle (crossing the road) and bighorn sheep.
We're meeting the realtor in an hour so I had better get a move on just wanted you to know that I am thinking and praying for you, hon. Hope you are feeling okay.
All my love - K
Hay Deb, We are puming up the prayers for the next step in your journey. When is the chemo starting? I read and reread your last blog and it all sounds very confusing, even to us in the field. Do you still feel like a nurse after all this time? I've never gone longer than a maturnity leave without working. It must be strange. Hope you had a great weekend at the beach with the family. The weather sure was great. Keep bloging and we will keep bloging too. All our love and prayers Cathy and Artie
Debbie and Joe:
This is my third attempt at blogging. 1st one is in cyberspace, the 2nd didn't go thru and I had to run Colin to weightlifting...so now I am standing here until I finish.
Just returned from an overnight in Branson, MO. Bee was at Kanakuk Kamp and they start thier closing ceremonies at 7:30 am so we had to go the night before. Colin and I made the trip this year. It is a beautiful part of the state. Rolling hills and lakes galore. He had a great time.
Mere tells me that she has been working on setting up time with you while she is in Lansdale. Too wierd that she emailed her host family and a co-worker saw the email and recognized you as a client. Small world. Sounds like the co-worker is taking matters into her own hands.
I realize you are in OC. Please don't come home to Lansdale unless it is scheduled. Last year when we talked about her coming you had a wedding on the weekend of her arrival. If that brings you back I will not feel so bad.
I wish I were going with Mere. Needless to say no word from Valerie Reeder Tishuk...my cousin on Uncle Matt's side. So Mom and I will come when you are all the good side of the mini-transplant...unless you planned that cosmo party for before.
We don't have any other vacation plans other than a quick trip to Cincy around the 4th to look at schools with Mere. Xavier and Univ. of Dayton. Aunt Angie and I are flexible otherwise.
Enjoy the shore. Wish I was there.
Love COD Eileen
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