Just a quick catchup

Hello Everyone,

Joe said I need work on my paragraphs and using capitals. Well i told him he should work on taking blood pressures and bedpans! That means i didn't spend my career on a typewriter and actually am very proud of my new found computer skilss however spare they may be.
All is well here. I wish i could say quietbut that is not the case. I have either had a procedure done (cat scan of the chest, pulmonary functions, muga scan of my heart, and visits to dr. porter, my cardiologist and gyn m.d., and yesterday to the dentist) ov vivited a Dr. ,all to make sure i am healthy enough to go thru with the bm transplant. I still feel like i am talking about someone else when i say that. Other then feeling very tired i am ok.Doing lots of reading of the materials Dr.Porter gave me to prepare. Yikes!!!!! I know two weeks after the transplant i will be down at Penn saying "could you please take those stem cells back". "I want my old one's back". So i hope you will all bear with me over these next months as they say in the literature that i could have mood swings. Not ME!!!! I did attend church on Sunday with Eileen dand the Gerharts at St. Mary's Manor. It was a beautiful mass and sermon. The priest spoke about fear and worry and how God is always with us to ease our worry and that there is no need for fear, something my dear friends Edie and Kris have been encouraging me to believe since the beginning of this journey(and many of you have also written in the blog).Anyway it was really a perfect way to start the day and everyday from now on i will pray for strength and the faith to carry that with me. Alright, enough of that as most of you if not all have lived your lived believing that. I am just a slow learner.
The boys are well. Michael went on his first trip today to N.Y. city. (thank God not alone) A grownup (haha) is along to show him the ropes. He was very excited. He aksed Joe if he could borrow a pair of pants. We did shop as a graduation gift for a professional wardrobe, but he would not buy pants. So like he is still in grade school at 8pm "dad can i borrow a pair of pants".. See these boys (all three) need me around a little longer. Joey is well continues with the home improvement compay and seriously working out. He and Michael are playing soccer or baseball several nites a week. He is also my shadow these days and comes with me to shop to make sure i am ok and carry the heavy stuff. All he asks for in return is ice cream! Quite a bargain.
so thats it for now. I see Dr. Porter next wed. for a bmb. and lots more blood tests, so i will let you all know what's new. Thank you all again a million times over (you too visitor from Rhoades 6) for all the cards and blogs and well wishes and thoughts. REALLY they sustain me...I love you all.
Debbie

More pictures

Hey everyone,

Here are some pictures from Christian's birthday and our most recent visit to mom mom and pop pop's beach house. Hope you all are enjoying the summer and finding some time to relax. See you soon!

Love,

Jessie

http://www.kodakgallery.com/I.jsp?c=vs5ik4a.bmtr1sr6&x=0&y=-7uhcjj

Another interesting day at Penn

Hello Everyone, Again i cannot begin without thanking you all for all the cards and blog and well wishes. I know that i have been hard to reach by phone. Jess and the kids came for the weekend and actually stayed till this am. Poor thing took 5 hrs. to get back to D.C. because she had to stop and feed Emma and then Mr. Christian wanted out of the car, and then of course would not get back in the car to continue home. Yikes ! can you imagine that trip with a 3mo. old and a 2yr. old.I was thrilled to have them here as they make me laughand are full of hugs and kisses. But also a little tiring.
So we met with Dr. Porter today. My blood counts are very slowly recovering(although my white count is still low) so we discussed the bone marrow transplant(mini vs. conventional)and basically there is a one in three chance i will die from the chemo with the conventional trans. vs. a one in ten chance of dying with the mini. But the conventionalhas a 50% cure rate if you survive the chemo where as the mini has a greater chance of relapse and death from the Leukemia. Very sobering numbers but better then back in Feb. when i was going to Jeff. So i think i will stick with the mini and hope for permanent remission or that new drugs will be out if i relapse.I've bee sob with exertion and have a slight cough, so Dr. Porter wanted a cat scan of my chest today. We scheduled it for 12:30 (a 2 hr. wait). the nurse gave me the script and said "you have a 2hr. wait , why not go get some lunch?" Well as you know, you don't have to tell me twice to eat so we high tailed it over to the nearest pizzaria and i had a nice slice of pepperoni pizza and a soda(diet of course). Then we got bagels for the nurses on 6 Rhoades and visited with them and went to the cat scan dept. I signed in and they called my name and said "you have been fasting for 4 hrs. right? Well i tried to liebut couldn't sssoooo the couldn't do the scan cause i ate(even though the nurse told me to). So i resceduled for next week. Then we drove home (pretty annoyed after wandering the streets to kill 2 hrs.). Got home around 1:30 and had a 3:00pm appt. with my new family Dr. As our dear friend Bob is also quite ill. Dr. Kuhar is just lovely(after waiting another hour) but didn't like my breathing and did an EKG which is normal and checked my O2 level which is normal. So i am having a Cat scan tomorrow at 1:00pm. I got home at 6:05pm. What a day!!!!And i miss the babies. Its organized chaos when they are here but Jess brings a certain peace to the house and definitely maturity.So please crank up the prayers. I know the donor is a woman and is 36 yrs. old. What a selfless thing to do! I wonder if she has small children? or works full time and needs to use vacation time for the harvesting. Well i am very grateful to her for agreeing to do this.I ha dsome friends over tonite as our Bev turned 60! The girls brought dinner and Joe did all the work as iwas at the Dr. He did a great job and made many great cosmos. It was soooo good to see everyone. i really miss my social life and friends. I think the cosmo celebration is on hold as Dr. Porter hopes to get to transplant within 3 weeks and i have lots and lots of appt. before then. But boy oh boy will we have lots to celebrate after that. So thank you again for everything and especilly the prayers. Janet i hope you are feeling better. Miss Bonnie i pray for you many times a day. Mo and Bobkeep up the good work. MDF kepus laughing and Meredith i will call tomorrow and i really hope to see you while you are in town for whatever time you have free. Miss Suzanne we are all thinking of you and hope you are resting at the beach. And to everyone elsethank you and sleep tight.
love you all
Debbie

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

Start the Prayers Up Again!!

Hello Everyone,

It's me again so excuse the typing and spelling. I hope this finds you all enjoying this beautiful weather and a quiet weekend with your families.
On thurs. afternoon i called down to Penn to get the results of that days lab results. I was sure i would need blood and platelets because of the way i was feeling. Sure enough my labs were all low and they said to come down early Fri. am. A short time later Dr. Porter's secretary called and said that Dr. Porter wanted to see me on friday. Never a good sign, when he wants to see me outside of a scheduled appointment. Of course, I had a sleepless night, but I did figure out what it was he wanted to talk to me about. Unfortunately, my instincts were correct. I recieved blood and platelets and waited for him for an hour and a half. When he came in the room looking quite somber, he said well "You're alright, you're blood is alright at the moment, and I stopped him midsentence and said "It takes three weeks for the cytogenetics to come back on a bone marrow and I bet there are not good." And he said, "You are right." Unforntuately, my chromosomes have flipped back to where they were when they were first diagnosed. So heres the gist of what he said, technically I am still in remission because there is no leukemia in my blood, but it is just a matter of time before the leukemia will reer its ugly head, which is called relapse. Relapse is never good. He will not be able to use my stem cells, not that there are any right now because I am still immunosuppressed (meaning my bone marrow is not functioning up to par yet). So I need a bone marrow transplant and I need it soon. He was able to find two donors which are a 9 out of 10 match. Which is pretty good, but will still be very dangerous. He said I should have a 40 to 50 chance of survival as long as I am in remission and possibly be cured of the leukemia completely if it works. 6-8 weeks in the hospital and a long isolated stay at home. He said I should count on rejectionwhich is a good thing in small amts. because it will kill all the leukemia.If it is alot of rejection, well thats another story. I will need to take anti-rejection drugs and steriods for up to a year, maybe forever. Barry Bonds better watch out! The other option he gave was a mini transplant which is less chemo, they do not completely kill the immune system, but it is not as effective but it is safer. The third option was to do nothing and let nature take its course. I do not think that sounds like an option to me, I'm not quite ready to give up the fight yet. So, once again we are trying to decide what to do but i think i will opt for the mini transplant. Thanks to all the love and support you have shown me, I am OK. I am putting myself in the hands of God and he willl do whats best. Where's the cosmos!!! Remember I was able to see Emma born and Michael graduate Penn State. Unforntuately the family is not quite acting the same. They are very upset. Again, Where are the Martini's!! I have to decide pretty quickly so I can get the donor, (whomever that may be) tested and stem cells harvested. Again I have to have the transplant while i am in remission. Dr. Porter said i can convert back over to leukemia at any time. So please start the prayers, novenas, and rosaries again. I hate to give you bad news, i dont want any of you to worry about me because i really am ok, because of your love. I will write again as soon as i know any more about the situation. I am still waiting for my numbers to return to normal, but i am feeling pretty well. Hoping to get Jessie, Walid, and the kids to the shore sometime soon and spend QT with the family. A trip to Italy would be nice too. And a nice dinner with Brad Pitt would be swell too, but the word on the street is that he is pretty tied up as well. I love love love you all and will be posting again soon.


Love you all,
Debbie

Long Day!

Hello Everyone,
Well Joe arrived safely in Switzerland after missing his flight from Paris to Zurich. He was picked up at the airport by his friend Felix accompanied by his young daughters. Felix took Joe to his home and they both went on a run around a beautiful lake.(on just a little sleep on the plane). They then all went to dinner and the circus(yes the one with elephants and trapeze artists). Can't you just all picture my Joe sitting attentively in a tent with hundreds of screaming kids after being awake for 36 hrs.? I laugh out loud every time I picture it.
Anyway, I'm on my own here and can't quite believe I figured out how to publish or post own my own. So forgive all the mistakes and typos.
So went to Penn today at 7:15Am, had a nice cup of tea and a blueberry muffin waiting for the phoresis lab(where they harvest my stem cells) to open. Got there at 7:45 and they drew my labs by 8:15. Waited for 3 hrs. to get just the Cbc results to dertermine if i needed blood products. I usually wait 20 min. at the Oncology clinic so you can imagine my impatience, especially because I knew that i needed blood and platelets because I felt quite poorly. So at 11:15 the nurse says "wow your counts are all low and you need 2 units of blood and platelets. It will take about ann hour to get here so why not get some lunch" Again i am reminded of my man Joe and was glad he was a continent away. I had difficulty finding the famous cafeteria and after about a 15 min walk (a big deal with a low hgb>)I was so glad for the delicious blueberry muffin earlier. Midway thru the 2nd unit of blood they got the results of my CDC34 test which determined i don't have any stem cells rite now. I still don't a white count so I guess that makes sense. So i am to continue my double doses of neupogen( a med to stimulate white blood cells) and go back next Monday and try again. Stem cells stem cells srem cells!!! I of course am chanting, but you at home can't here me. Anyway arrived home at around 5:00 and needed a little reas. Thats when Joe called and said he was joining the circus. (a Swiss circus!!!!!) A safe haven from all of us. Just kidding, sort of!
So thank you for all the prayers today and please continue them ,I am sure thats why I am still here.
To my darling Aunt Angie, I can just picture you in the pool surrounded by the kids sipping a margharita. I reeaaalllly wish i was there to enjoy you and all my fav Chalk's. I know Dave would make me a great cosmo.
Mary Day i am so glad you still eat hot fudge sundaes. They are going straight to my thighs. I am thinking of joining WW again so i can get back to more sensible eating. I love hearing about the "boys" and would also love to be in the bleachers watching your guys or my nephew Bobby who is also a great ball player.
Thanks to Mo for the visit and black cherry soda and to Km for the visits and laughs. Its very difficult to be house bound for 2 weeks and my only outings are trips to Penn. Not complaining honestly. Just miss all my buds!!!
Anyway, i will try again to sleep.Thank you all for love and support and cards and blogs.

Love Debbie

Hello Everyone!

Hello everyone,
Just a quick hello. Last week went ok. As the week wore on I could feel my energy getting low, so we headed down to HUP for some badly needed platelets and i hoped blood.My hgb. was 8.6 but generally they don't transfuse unless you are below 8.0, but with the weekend coming up and being short of breath i thought for sure i was in for a unit of blood. Penn however, kenw i was coming back down monday for a test to see if my stem cells are high enough for harvesting, and i guess figured to give me blood then. Needless to say with no white count and no energy it has been a quiet weekend. Joe made a great bolognase sauce Saturday night followed by my count em forth hot fudge sunday this week YIKES!! Today Joe left for Switzerland on a trial. H e was very anxious about leaving me. I guess i am in good hands with these boys of mine, lots of friends on call so no worries. I hope you all had a nice weekend. Thank you for all of the continued cards, blogs, and well wishes. Love to you all Debbies the grouch, Oscars sister Joey is responsible for the last line as well as the wonderful typing isnt it scary that i have to type for my mom.