Guys -- There are No Smiles Going Around Today
Dear Fod's,
It was another tough night @ HUP. Fevers up to 104, rigors and a dark trip for the CAT scan. Needless to say, I did not get much sleep last night and was very tired today, stayed mostly in bed. The CAT scan results were fine, meaning there were no fluid pockets or other abnormalities. But the pain and bloating continue.
Right now I am out of bed talking to my friend Kava who came up to read me a poem and to visit with me. She is the interfaith HUP pastoral minister. She does so much to help me and to lift my spirits. We shared a cup of tea (thank you Donna K. it is delicious) and we visited a while.
Still retaining lots of fluid in my abdomen and legs making it difficult to breath and to get in and out of bed. I am +1,000 cc's on this shift alone. They cannot cut back on the fluids because I am on 6 different antibiotics, TPN and the tac (anti-rejection drug). If I could just eat something, they could take the TPN off but I still cannot swallow solid food.
I am not smiling too much today. ANC is still 0 at day 33 -- which is not good. I know you guys think that I am being brave, but I am really not these last few days. I cannot even listen to myself talk because all I do is complain.
A few minutes ago we got some good news. The donor is willing to re-donate some bone marrow, if it becomes necessary. With all the shots, testing and harvesting -- that won't be completed for another 2 weeks. Today is 6 weeks in the hospital and the thought of another long stint is more than I can handle right now. Hopefully, my own cells will finally get into gear here and we won't need the donor, but God Bless her for continuing to offer to help me.
Thanks for corresponding on the blog. I may not answer everyone individually -- but Joe reads them to me every day and I take joy in hearing about your daily lives. Thanks for staying in touch with me. As you know, I am still not answering the phone because I am too tired to talk.
I do hope that you are all well. Beth, I hope your sore throat gets better. Mo -- sorry about your Dad and hope that he gets well.
Thank you for all of your blogs, cards, and kind wishes.
I love you all.
Debbie
posted by Joe @ 4:43 PM
27 Comments:
Dear Deb, I am so sorry this is such a bad time for you. I know things will get better soon. As I read your blogs, I can hear your sweet voice that has a smile in it. I remember it so well - so enthusiastic and comforting to everyone else always. Our prayers continue for you -- hang in there until things take a turn for the better. Love to you all. Jessie's kiddos (a word I picked up at the elementary school where I work!!) are beautiful! How proud you all must be. I love you! Cheryl (Crone)
Debbie & Joe,
We admire your courage & steadfastness in the face of such adversity. One of these days, something good will happen & we can't think of a better day than tomorrow for it to occur. We can't fault you for not looking forward to undergoing a new stem cell treatment & all of it's side effects, but it must be a good feeling to know that the donor is willing to donate again if necessary. What happened to the BMB analyists; are they on vacation? Surely they know that we are all anxious to know the results of last week's test? Let's hope that tomorrow is a better day, as you certainly deserve one. Love, Mom & Dad
Dear Debbie -
You've been blessed with another group of people to add to your network of friends.
There is Kava (we will have to hear more of her in the future) and "the visitor from Rhodes" (we love Alison) and now you also have the "donor". aka... your angel on earth.
You are just surrounded by a cocoon of love. You will get better. It will just take a little more time. If you go through this process again ask yourself how will it change your life in 10 minutes, 10 months and 10 years. (this is from an Oprah story). In no time at all you will be feeling better and applying lip gloss to that smile!!!
Hey Debbie... Mom wanted me to let you know that they want to some church today on theirs tours and she lit a candle for you!.....I'm going to keep thinking positive! Luv ya Meredith
mrs teklits,
oh boy-- it breaks my heart to know you are going through such a hard time. I keep wishing and praying that any minute now things will take turn for the better. Remember that you are going through something so hard, and you have every right to complain to whoever you want ,whenever you want. Although I do have a hard time beleiving that you are complaining that much-- since I have never heard it from you ONCE!!! So much love and prayerssss for you .
Love Always
alli
Dear Debbie,
complain, complain it's OK to complain.. good grief you can complain darling..... let's face it we on the "outside" have been complaining about stupid silly stuff during our days and little aches and pains and flushes (I'm peri-menopause at 41 god help everyone when I get into the real deal!).... Wonderful news about the donor.. (didn't I tell ya!).. and aside from the penny from heaven, a butterfly following me around all day.. a GIANT bird thingey flew past my window as I was thinking of you.. it might have been an Osprey although we live close to the water I've never seen anything like it fly over our back garden... Debbie... it's OK for you to feel low, blue, got have a full out pity party if you need one.. cause guess what... it's all coming to an end real real soon... Donor is lined up (God bless her, we need to start praying for Debbie and her donor from tomorrow on the conference call).....
OK HERE IS THE PLAN TO NOTCH UP THE CONFERENCE CALL......
CALLING ALL FODS/CODS/KODS/GODS et al.... (I am not forgetting the Ghosts of Debbie as we want all spirits in this call!!!)....
Please, tommorrow (and every day until we have Debbie home), lets light a candle/lumanary/match/lighter at 5pm local time no matter where we are, in honor of our Debbie and her struggle.. God's been getting the conference call.. but let's make sure we "light up the lines".... Debbie can you have a candle/match/lighter?! strike out with us!!! Tomorrow I will be in PA and Friday NY but I'm going to carry a lighter with me and ensure I light it at 5pm as I say my prayer for you... when I get home after the weekend I will light my "blessed candle" at 5pm every day....
This little light of mine,
I'm going let it shine,
This little light of mine,
I'm going to let it shine,
This little light of mine,
I'm going to let it shine, shine on Debbie, let it shine....
think of the bmbs like a little pilot light on your furnace, you keep trying to kick start the burner and it's not working but the pilot light has not burned out yet.... no way.... it's ready to spark the system it's just going to take a little more fixing of pipes before you hear the furnace roar...
God bless you Debbie, today was an incredible day.. I'm not a "religous" person but I know I'm spiritual and I know I'm blessed with coinky dinks! that always come true.... so Darling Debbie... when it comes to the big party.. remember to save a cosmos for me!
Lots of love, Vistor Alison
ps a batter operated light will work too if you are not in a position to "strike a light".... lets all envision the pilot light kick starting Debbies furnance (but now with any more temps!!!)...
We can all do it for Debbie.. let's "go on strike for Debbie"...
lots of love lol Visitor Alison
Debbie Darling you can complain all your big brave heart wants to...no-one deserves to more than you!!Alison ,you are inspired,really you are..the song is a true Godsend,completely wonderful and a perfect Debbie song,which we can also now add to our daily 5P.M. tribute to the Debbala...just remember ,ONE DAY AT A TIME...DO NOT THINK ABOUT TOMORROW...it will all sort itself out...The babies are adorable,you must be so proud and happy to see them....we still have to get a costume for Mackenzie....I've been with her all day and I must say it's been amazing ..she has been a total darling..she is crawling around the floor as I type this...I know what you mean now..finally..it all comes home,and IS LOVERLY....I think of you many times a day and even through the nite..my prayers for you are very many each day,and I know God is listening to me and to all of us...have no fear...all WILL BE WELL...take care ,my dear...love and hugs xxoo :)Bev
Hi Deb- Hope you are feeling a little better tonight. That is great news about the donor, but I'm hoping you will not need her! Hopefully your throat will improve so you can eat and get rid of the TPN.
I had my Mom to see Dr. Z. today and everyone there sends their prayers from the office. Also Lee and I visited with Dr. Bob today to flush and redress his PICC, we spent most of our time talking about you. We all miss you!!!!!
The weekend at Lee's was great, all our favorites- great food, cosmos and lots of laughs. We all were wishing you were there. I slept in your spot with Mo but I know I'll need to find a new roomie next year, you'll have your spot back.
I know this is a rough patch right now but this time next year it will be a distant memory. You will be back at MSC and your calender will be full as usual. Those little grandbabies will be keeping you busy.
It is quiet here most of the time. Kate is back for her last year, Morgan seems to like law school. She has made a lot of nice friends and enjoys the classes so far. Nic is busy working, teaching and taking classes and planning the wedding. It tires me to think of her schedule. They all ask about you often.
Hope you sleep tonight. Better days are just around the corner, I just know it.
Love, Holly
hey little lady,
don't you worry about responding to us, let us do the talking and soak it up. don't worry about the smile either, just make sure the chap stick is applied and all else will follow. love you and thinking of you always. xoxoxoxokm
Deb, Don't know what to say other than we're all with you in heart and soul. I wish I could help. You've had enough. Your donor is a wonderful person. If only she knew the wonderful person she is helping.
Love and prayers for- and warm wishes to- you.
And Joe too... when one cries, the other tastes salt. LK
A little joke to make you smile.....
Two medical students were walking along the street when they saw an old man walking with his legs spread apart.
One of the students said to his friend: "I'm sure he has Petry Syndrome. Those people walk just like that."
The other student says: "No, I don't think so. The old man surely has Zovitzki Syndrome. He walks just as we learned in class."
Since they couldn't agree they decided to ask the old man. They approached him and one of the students said to him: "We're medical students and couldn't help but notice the way you walk, but we couldn't agree on the syndrome you might have. Could you tell us what it is?"
The old man said: "I'll tell you, but first you must tell me what you think."
One of the students said: "I think it's Petry Syndrome."
The old man said: "You thought.......... but you are wrong."
Then the other student said: "I think you have Zovitzki Syndrome."
The old man said: "You thought.......... but you are wrong.
So they asked him: "Well, what do you have?"
The old man said: "I thought it was GAS........... but I was wrong
DEBBIE DOES DC...... we want light.. we got it... Debbie a luninaria will be lit in honor of you at the following event
http://www.celebrationonthehill.org/luminaria.asp
When the sun goes down on September 20, thousands of luminaria will light the path around the Capitol Reflecting Pool to remember those lost to cancer, those fighting cancer, and those who have fought cancer and won. This ceremony of light, held at Relay For Life events around the country, symbolizes the hope and perseverance with which we all continue to fight.
Keep the fire of hope burning with a luminaria in memory of someone lost to cancer, in honor of someone still fighting, or in special recognition of someone who has beaten this disease.
Hey Chiz-
You better be complaining!!!! I'm serious! Complain your little heart out, honey! Go for it! I just wish I was there to hear it and help you out because like Alli I don't believe it for one minute! You need an expert complainer (like me) to give you a hand.
Brilliant idea, FOD Allison.
I am seeing FOD's, COD's, ROD's, GOD's, KOD'S (?)standing up and holding up their lighters and flicking their bics like we are at a concert. Right at 5pm.
Can you see it in your mind's eye, Chiz?
Glad to hear that Kava was there to pray with you today (Krissie, you pray????)Hope it gave you comfort, courage and hope. Blessing our donor up one side and down the other. God bless you Mrs. Donor, wherever you may be!
Here's today's word for you:
Healing
Filled with God's healing love, my mind and body are strong and resilient.
We don't have to wait until times of apparent sickness to open ourselves to God's healing power. Our spirits, minds, and bodies become more alive as we know and affirm that health and wholeness are always God's will for us.
Healing can take many different forms. We often recognize healing as an activity that takes place within our bodies. We have all watched and marveled, even as children, at how a scraped knee or a cut finger soon heals and leaves little or no sign of the injury that was once there.
Healing takes place in our souls as well when we are willing to let divine love do its healing work there. Healing takes place within us and among us with the recognition that we are all children of God.
"'Lord, if you choose, you can make me clean.' He stretched out his hand and touched him, saying, 'I do choose. Be made clean!'"--Matthew 8:2-3
Love you - K
Dear Debbie and Joe,
I just want you to know that you are in my prayers each day. I am so sorry that you feel so bad. You ARE very brave. We are all looking forward to that smiling face in Ocean City! Jessie's childen are just adorable.Mom, Dad, Chuck and Wyatt want you to know that you are in their prayers!
Love,
Donna from the beach
Good morning Debbie,
I'm packing having just packed the gang off to school/work... and I'm not forgetting the lighter.. if I could just find the fecking thing! (oh yes folks fecking is a good ole Irish cruise word that you can say in front of your mother! fecking or flipping.. real good ones.. hope you don't mind Mrs. T snr!!). I will find the little fecker before I leave.. I do have a box of matches but I'm not sure it will be safe as I imagine I will be on the turnpike from PA to NY at 5pm (joy!)... and trying to strike a match may prove hazard to the other drivers!!! lol... see Debbie I'm complaining, complaining, complaining at its not yet 7am....
This little light of mine,
I'm going to let it shine
This little light of mine,
I'm going to let it shine,
this little light of mine,
I'm going to let it shine,
Let it shine, shine on Debbie, let it shine...
I will make no comment about nurses having lighters! as I know we don't have smokers in the group! lol - quit myself 6 years ago...
I'm picturing the FODs et al waving lighters and singing.. oh boy.... come out WBCs wherever you are....
lots and lots of love, Visitor Alison.
Dear Deb,
I, too, spent time with Kava when I was at HUP. She is so gentle and dear and comforting. I can see her face as I write this. She is so busy, her staff had been cut in January, with so many patients. The last time I was at HUP she made a special effort to come see me a second time, long after she should have gone home.
God always puts people in the right place at the right time. Since starting my own AML journey, I have come to believe that with all my heart.
I remember feeling bloated too and my constant companion was the toilet, especially at night. One night I felt so bad, sitting there on the toilet, and it suddenly came to me that it was a good thing I had no other choice but to get the transplant. It was such a horrible experience, I would be regretting it big time if there were any other way to avoid it. But you and I didn't have any other options. The transplant is the only way to life. So I just had to keep going because I had chosen to live.
I have shared your blog with my sister in Iowa who was my constant companion in Seattle and we both pray the white cells are coming back, slowly but surely. And if they are not, God has another plan in mind. God bless, Linda M
Debbie,
Rainy days are good for snuggling under the covers and growning WBC's.
You go girl!
Dear Debbie,
I'm so sorry that you are suffering so much, I'm praying extra that you'll start a turn around soon. After seeing those beautiful pictures at the end of the blog I was smiling. I hope you can keep those beautiful smiling faces in front of you when things get tough.
You are a brave soul, you're aloud a good amount of complaing after all you've been through.
God Bless and keep You.
Love,
Pam Kuntz
deb:sorry to hear about the fever and rigors. they ar tough! good news about the ct scan. yeaterday lee w.and holly came over and changed my dressing and flushed me; mo and i were grateful. her father is doing better on steroids. mo hopes to come home on friday. we both send our love and prayers. bob
hey deb,
how about our new best friend allison with the fecker word? i tried it a few times saying it first to myself and then aloud...i think you need a nice brogue to pull it off, just doesn't mix as well with the philly twang we all have! i was really excited about it since i have a few occasions where i need a word that packs a wallop. i think you have a few or a million occasions to summon some strong language. deb, i am thinking of you always. love, kathi xoxoxoxo
Oh Debbie:
Thank you for complaining and letting us know how you feel. You have every right to "vent" and we are all listening and praying along with you every step of the way. I hope you find a comfortable snuggly spot today to rest a little without rigors and toilet trips. As always, I send to you all the well wishes from the CMMC folks that ask about you each and every day. As Alison mentioned, I too have had a butterfly hanging around lately and I named her Deb. As I sit on the porch with my wine glass, the "Debberfly" beautifully flits around my flowers and I send my prayers on her wings. Hang in there.
Love Jill
Dear Debbie,
I am sorry to hear you are not feeling well. Each day I pray today will be the day you turn the corner and feel better!!! It's nice to hear you get some company and your grandchildren are adorable!!! Mike is now a freshman at PSU, majoring in BMB. So far, so good! But we really miss him. I imagine this is something you remember well!! We're looking forward to the football games and visits! I've enjoyed reading all the posts, especially catching up with the former NPH gang! Try to stay strong. God's peace be with you.
Love,
Nancy A.
Hey Debbie:
Mere was right we went to the San Xavier Mission yesterday which was started by Jesuit priests. The native indians here still go and light candles and pray for "milagros" miracles to happen. With that they pin small medals on the gown of the statues and light a candle. So I lit a candle and pinned a small charm of a women on the dress of Mary for you. It was a gorgeous church in it's own little way.
Haven't stopped worrying about you and keep hoping that you will get beyond the pain. When I get up in the morning I think about how hard it must be for you to keep pushing. But keep it up. You are a better sport than I would be.
Tucson is lovely and being with my friend Kathy is fun.
Miss the family and look forward to getting back to the routine but love getting the chance for uninterrupting stitch time.
I keep hoping for a "milagros".
Love you to pieces. COD Eileen
hey deb...i just lit my candle ( a few minutes early) I am so praying that your body does exactly what it is supposed to...God has such plans with you yet!!!! By the way, the only time I ever heard you complain was if a patient would not let their bedsheets stay tucked in :) complain away and write it down...we want to hear it! I love hearing you talk about your kids and how they have turned out-makes me think maybe my 3 teenage/preteenage cherub boys will someday be ok! love you, bren
HI Debs ,at 5P.M. I was in the car racing to Bob's to drop off food(since Reen is with her parents), I managed to lite my butane lighter and barely missed setting the car on fire (you know me and fire,I'm scary)..got a chaplet in and a roasary (in the car ,with the fire) it all felt a bit sureal..I was hoping no one saw me..oh ,got a chorus of, "this little light of mine",in too ..a bit frenetic,but so what!!I hope no news is good news ,will check back later ,hoping your day was much better today than yesterday..love and hugsxxoo:)Bev
Dear Deb,
Vent away, you so have earned the right. I was still at work so I could not light a candle so I turned my desk lamp off and on for you and said a prayer. I wish only wellness for you tonight. Debbie dear you are in my heart every minute of the day.
Keep the faces of those adorable babies in your heart and mind. They are tooooooo cute. Jess thanks for sharing.
love, hugs, and prayers
jean
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