Happily Surviving at the Beach
To my dear loyal friends:
Sorry it's been so long since I've last written but I've been at the beach and at HUP. I survived round #2 of Vidaza with not too many side effects other than extreme fatigue and mild nausea. I made it down to the shore for the 4th of July with everybody: the boys and Laurie, Jessie, Walid and the kids. We had great weather and fun with the children.
After the 4th, I stayed down the shore for ten days with Jessie and the kids and then Joe took me home for a week to receive round #3 of Vidaza. I had the last infusion on Friday morning and Joe and I headed straight to the shore. The dizziness is worse, I'm not exactly sure why, and it makes it difficult to get back and forth to the beach. When it was just Jessie, the kids and I, the poor thing would have to drag the kids, a huge cart full of toys, chairs, and boogie boards, and then me. The most challenging part was that walk from the stairs down to the uneven sand.
We had a surprise visit from Uncle Joe one weeknight when he was working over in Egg Harbor. He's the only one that can take the kids on the rides so he, Jessie, the kids and I ventured over to the boardwalk. The evening crowd and noise was quite overwhelming but watching the kids' faces on the rides (Emma the thrill seeker, Christian the cautious sticking to only the train) was totally worth it.
I'm headed home tomorrow to catch up on my rest (I need two naps a day) and then I will be back for another week at the beach with Jessie and the kids.
We've had some very long days at HUP - matching me for blood and platelets has become more challenging due to the presence of antibodies. They estimate I've now had over 200 transfusions each of blood and platelets. When I needed platelets after Round #2, it took eight hours to receive them do the difficulty matching them. There is talk of having to progress to a more complicated HLA-type matching for the blood and platelet transfusions, which would take an estimated 48 hours to complete. This past Thursday Heather was able to schedule two units of blood, one unit of platelets, one unit of fluids, plus the chemo and we were in and out of HUP in about five hours. This was pretty remarkable considering all they were able to accomplish. Thank you to my dear friends for transporting me to and from HUP and for your patience and presence with me during these HUP visits.
We got word that Dr. Porter will be leaving on sabbatical on August 1 and will be gone for six months. I'm quite upset about this, as he knows me so well and has allowed me to call the shots (within reasonable limits) for so long. Heather will continue to see me and work with the doctor I will be reassigned to.
Thank you so much for continuing to support me and my family - for the cards I receive every day, for our friends at the beach who help me back and forth and all the things that all of you do for me each day. It means so much. Happy Summer!
Love,
Debbie
posted by Jessie @ 10:50 AM
18 Comments:
Deb...
I've looked for you in OC in most of June; unfortunately, I now see that you've been there in July! I'm so so happy to hear that you've been able to spend a fair amount of time at your favorite place with your favorite people! I think of you all the time, and hope to be able to see you soon... don't hesitate to call when you get back and are feeling up for a visit.
Lots to talk about. Lots going on. Love to you! And Congrats to you and Joe on your 35th anniversary!
Lizzie
So glad you were able to go to the shore these past weeks. We were down in Sea Isle with our whole family last week 11th - 18th - and the weather was gorgeous. Hopefully the rest of the summer will be as beautiful as the last couple of weeks and you will spend many more times down the shore.
Also, Congratulations on 35 years of wedded bliss - what an accomplishment - you have a lot to be proud of - you have a great family and support staff of friends and family too. Keep that chin up and know that you are in my thoughts and prayers. Love Shelly
Sabbactical...what is Dr. Porter thinking...Don't tell me he going to Italy right? Something tells me you and Heather will be able to manage your case just fine. LOL
I,too,was amazed at the timing on your last transfusion! All those products in 5 hours...with all the red tape.
So happy to hear that you have had all of this time at the shore together. There is nothing like the ocean to help you heal and of course...lots of rest.
I am always thinking of you. I am working on getting both Mere and Colin ready to shove off. Every trip to Target I pick up something else. Colin of course is not into all these details so I am trying to look at Mere's pile and duplicate as much as possible. His little town where he will be only has Wal Mart so I am trying to get it all at this end. August will be a blurr with both kids moving out. Brendan thinks he is so excited about being an only child. It'll get old...I am just looking forward to less laundry.
Thanks so much for your update. I really miss you sweetie.
All our love...your MO Chalks
Debbie
I'm glad to hear that you have been able to make it down to the shore. I wish I could come up and spend a week at the shore with you. My friends and I have talked about coming up there. Maybe next summer! Good luck with the rest of your treatments. I'm thinking about you all the time and praying for you every night. Enjoy your next trip to the beach. Love Mere
Glad you're enjoying your summer as much as possible. We're always pulling for you and praying for you, even if we don't write as much as we pray. Love to all.
I haven't written in awhile, its been a busy summer, but you are in my daily prayers. So glad you had such a nice time at the beach with your wonderful family. The beach is truly a place of renewal and strength. We haven't sprent as much time down there this year as past years. I've been babysitting Jordyn more and Bird has been really busy this summer with work. I'll be going down for 10 days starting next week, Rose will be home from her trip abroad and will join me for a couple of days, Missy and Jordyn will be down for a few and my girlfriend will come down for a couple of days. Hopefully Bird and I will have a few days as well.
Your HUP stories always amaze me, you are incredible!
Hope the rest of summer is uneventful and peaceful for you. I will be in O.C. for a day the first week of Aug., if you are down and up to a visit let me know, I'd love to see you.
God Bless
Pam
Hi Deb,
glad you have been enjoying Ocean City. I must be missing you on the beach. I have to say I spend most of the time on the boat though. We went to the seafood festival on Friday and enjoyed that. Nothing much to report on my end. I hope the dizziness will go away soon. Maybe I'll see you on the beach next week.
Take care,
Betty
Hi, Debbie - I am so glad you blogged again - I was feeling so badly that I had not sent a note to say hello. Summer is good - it is only the second summer I have worked since 1989, but I love it at Carmel High School and love what I do - I am blessed!
Jen and Thomas flew from DC to Louisville over the weekend for a wedding; and, with Louisville being so close to us now, we drove down for the day yesterday and took them to the airport. Gosh I miss that little girl! And, Thomas is so good to her - he adores her. I love you and so thankful you are at the shore so much and that Jessie can be with you so much. She is the very best! And, I see from other blogs, that you and Joe celebrated 35 years together. We just had our 36th - where has the time gone?!! I miss you and love you! Cheryl Crone
Debbie:
So good to hear from you and glad you are enjoying time with family at the shore. The little grandbabies always bring smiles, don't they? You are always in my prayers. Carolyn Stuart
Debbie & Teklits,
Thank you for Maggie's gifts- they are so cute and generous! This is the first time I've been on the internet in awhile, so I'm glad to be catching up and to hear that you're down at the sea shore... right where you should be. That stinks that Dr.Porter won't be around for awhile- but I'm sure you'll get great care in the mean time. Always thinking about you guys... feel better and enjoy the summer if we don't see you for alittle while! Thanks again!!!
xoxo Megan, Matt, Matthew & Maggie Rose
Debbie.. been awhile.. summer is always busy and this summer i did summer school.. except for the week missy came out to visit!! She looks great and is doing so much better then the year before ( fods, it my sis who became blind from taking care of a pt that spit on her..long story) anyways, we did alot of shopping which means alot of describing from me,, the least domestic one around.. but we had alot of laughs over it..
Boys are doing great.. actually patrick had some reaction to a severe sunburn on his back he got at the beach!!Could it have been from his mothers advice of cooling it off in the pool.( apparently the cholrine isnt good for sunbruns). anyways, after a trip to the er and some pain meds, and steroids he is feeling great again..
Mark has been playing more baseball then ever.. went to east cobb for a tournament finished up the dusty baker camp,, finishing up the wooden bat league.. then a tournament next week...
we start back to school on aug 13th,, can you believe that!!! cfrazy.. not much time to get bored...
debbie , i sure hope you are doing well,, keep inhaling that ocean air.. probably the best med besides those beautiful grandchildren.. love to the family.. mdf
Debbie.. i sure hope your doing ok.. havent heard anything in awhile.. which i hope is good news..
Patrick came home for a visit, i absolutely love having him home.. his birthday is sat.. same as mikeys i cant believe patrick will be 20!! he has to work that night at the Golden Gong, so, we are going out to a nice dinner tonight. then he will drive to santa cruz tomorrow, spend the night with friends. then back to san luis obispo on friday in time for work....
Mark and i both go back to school tomorrow. i cant believe it.. its still summer.. im not thrilled about it.. but he seems to be a little more excited since it is his senior year!!! The cheerleaders painted hearts and polka dots all over his car in pink!!! had to wash that off immedietally cause remember.. he says he is MOB>>> money over bitches.. well, i know this will change. but until then... his car is much cleaner..
I have ben eating alot of chips and salsa this summer.. i just crave them .. oh.. and get this . .i am not menopausal yet.. damn.. thought i had that under control if you know what i mean..
Wanted to ask you pensylvanians. does anyone know anything about Penn State Greater Allegheny? a friend of mine asked me to ask..good school? you can either answer here. or email me.. my2sonsfoley@yahoo.oom..thank you
Deb my prayers continue... i do hope you are feeling well and like the dr covering for Potter.. stay strong.. love.. mdf
Hello Debbie,
I am so sad to hear that you were in the hospital this week. Joe said you had a tough week. I hope that you are resting in the comfort of your home.
I just want to say you so much for the beutiful bracelet you gave me.
It brought me to tears as I read the card.....please remember that you have brought so much to my life. You are my hero....let me tell you that when ever I am having a rough day I think of you and think to myself that you have been thru so much and when I talk to you it amazes me how you never complain you just talk about everybody else. You are such a special person. I will think of you each and every time I look at my bracelet.....thank you so very much..it means the world to me.
I hope we get to see you soon in Ocean City and please feel free to call me if you need me to look in on the house. (609)391-0781.
I always keep you in our prayers and pray that you feel better soon.
We love you Debbie!
Love,
Donna,Chuck,Wyatt and Mackenzie
Debbie, just checking in to say hello and see how you are feeling.... much better in the comfort of your own home I'm sure. So glad that they didn't keep you in the hospital. You know that if you need anything, anything at all, all you need to do is say the word. You are always in my thoughts....
Love, Patty
Debbie, so thinking of you .. wish you were on my facebook.. i'm going home to Ireland next week and I'm gong to video tape and post like mad... bring you with me .. friend me by searching facebook (you got to be a memember first!) akellyassociates@gmail.com I want to share this visit.. and some candles I will Light for you there! Visitor Alison...
Hi Debbie.
By the way, the hi Debbie was from me. Hope all is ok.
Beach Betty
Hi. Usually no news is good news so I prefer to think that's why there hasn't been an update in a while. summer was nice. Although anytime I attempted the beach I left due to wind however the boat did the trick most of the time. I hate that September has been so dreary. My tan is fading fast and I was counting on being tan for AJ and Mere's wedding next week. We are very excited about that. It came up so quickly. Festivities start at noon on Oct. 9th with a bridal luncheon, afterwards there is the rehearsal and then we are hosting the rehearsal dinner at a beautiful little place called the General Warren Inne in Malvers. They're getting married at St. Patricks in Malvern and the reception is at a nice country club called White Manor. The next morning Art and I are hosting a farewell breakfast at the hotel. It should be really fun. Looking forward to an update. I think of you often. Hi to your family.
Beach Betty
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