Not Even Death Can Stop Deb From Having Her Say

[Every single one of the posts on this blog were typed and written by Deb. Except this one. She died on May 18, 2009, peacefully and no longer in pain, with family and friends by her side. I wish I could write that less abruptly, but that's what happened, and there is no easy way to say it.

I'm Sis#1 in the blog, and throughout Deb's illness, I'd ask her if she would want me to type an update. She'd always refuse, saying she wanted to do it herself when she felt better. She wrote some amazing things, even when she was in a lot of pain and taking a lot of medication.

She finally asked me to update the blog for her after doctors told her that she was certain to die. We talked a lot about what she wanted to say, and she had a lot of pent up things because she hadn't been able to post in a while.

If you follow this blog, you'd see that Deb was diagnosed with Acute Lymphoblastic Leukemia in October 2005, had a stem cell transplant in February 2006 but then suffered a relapse of her leukemia in November 2008. She had been continuously in the hospital since Thanksgiving until her death, and in the ICU since December and then moved to a rehabilitation hospital ICU in February to see if they could wean her off the respirator, remove the tracheotomy, and get her able to move, and get out of the bed.

Eventually, the doctors informed us that Debby wasn't going to be able to get off the respirator, that her organs were struggling from massive infection and that she had developed a new form of leukemia, chronic monocytic leukemia. As I understood it, the new leukemia was likely a result of the massive DNA damage that occurred during the first treatment that put her acute leukemia in remission.

When Deb was given the information that rehabilitation wasn't going to work, that she was never going to leave the hospital and all hope to get her old life back was totally gone, she request the focus of her care be more on comfort than fighting, signed the Do Not Resuscitate order and prepared to die.

What a difficult thing. To be there in mind, trapped in a painful, failed body, waiting for a death. But, during this time, she thought of her online friends from both close and far away, and she wanted to give you a final blog post that shared her views. So here it is. The following may not *sound* exactly like her because it's hard to read lips but it is certainly her views. In her last days, she dreamed of walking and running, and you could see her legs moving as she slept even though she barely moved when she was awake. I'm not sure what she is doing now, but it certainly has nothing to do with being confined to a bed.

Immeasurable thanks to all for being with her on her journey in whatever way you were able. You have no idea how much it helped. -Steph/Sis#1]

Deb’s Last Blog Post:

 

I am writing this blog post to say a more proper goodbye to all the interweb peoples who have helped me keep it together. Who have given so much support to me through the years. Who are my friends and family. Who were strangers who became friends.

In my blog, I often give assignments for people to do. Here’s the ones that are on my mind….

1. Appreciate everything. Even stupid stuff. Since I’ve been sick, I’ve communicated with a number of service members abroad. We understand each other well because we both know how much we miss just the normal stuff that most people take for granted. Driving. Driving in traffic. Complaining about stupid stuff is for people who have no idea how good they have it.

2. Be a force for good. There’s enough bad stuff in the world without adding to it. Forgive people and leave grudges for others. Do kind things just because. Figure out what you are good at and do good with it.

3. Seek a higher power. I believe Jesus Christ is my savior and this gives me comfort. As it takes faith to believe, it takes faith not to believe. I believe God doesn’t want us to live our lives on an island, and that finding a community of faith that is uplifting and supportive to you can make a huge difference in your life. If you have that cool. If you don’t, consider it. But don’t wait until you are looking death in the eye because you will miss out on some neat things. (Love you ACTS community!)

4. If you have kids, squeeze them. And then squeeze them again. Give yourself a pat on the back if you are responsible and work hard to give your children a good life and better opportunities. Sometimes you don’t give yourself enough credit. If you have people in your life that you love, tell them that. Often. Don’t save your I love you’s for a rainy day.

5. Take care of yourself. I understand more than most that there are injuries and illnesses that you can’t prevent by eating well and moving, but that doesn’t mean you should be fatalistic. Nothing like being hooked up to a respirator to make you appreciate just getting going, doing and breathing. Treat yourself at least as well as you treat your car–you put the right type of fuel in your car and you drive it safely most of the time–you are more important than a car so treat yourself that way.

6. Enjoy life. Life is meant to be enjoyed, and as long as it isn’t hurting yourself or others, go for it. Bring joy to others. Find passions in your life that make you want to get out of bed in the morning, unless your passion is sleeping and then go ahead and sleep in.

7. Be open to new things. Listen. Doesn’t mean you have to change your mind, but who knows, you might learn something.

8. Support sensible health insurance reform. I’m not sure what that ends up looking like, but injuries and illnesses shouldn’t fate people into a life of insurmountable debt and bill collectors. I spent the last “healthy” months of my pre-hospital stay, worried and scrambling to find insurance because my COBRA insurance ran out. Patients should be able to focus on getting better and not crushingly large mountains of papers telling them that their credit is forever screwed.

9. Ask for help. This is a hard assignment. For a lot of people, it isn’t easy to ask for help when you need it. But what I’ve discovered is that it is a part of the human condition for people to want to help those in need. People enjoy helping others. Sometimes you get help where you don’t really expect it. So if you need help with something, go to the appropriate people and get it.

I sometimes think that the bad stuff that happens in life is one of the few things that bring people together. It still sucks, but maybe it sucks a little less.

There are too many people to thank for the help they gave me and my family over these difficult times. I would list you individually but am afraid I would leave someone important out. My last days have not been easy at all, but it has been a great comfort to know about all those who gave me prayers and love.

In my life, I’ve looked for love in a lot of wrong places, and as I die, it is nice to know I am surrounded by love.

10. Last assignment. There is no last assignment. You create your own assignments every day. Choose wisely.

However, my last assignment that I give to you is to take care of my 9 year old daughter Zoe the best you can. I love Zkat from infinity and beyond. I just am trying my hardest with what I can do from this stinkin bed to help her. I know she will be taken good care of in a house full of love, but I feel pain that I can’t be physically with her any more to prepare her for a happy, long and healthy life.

My friend Dan set up a college fund for Zoe recently, and I can’t tell you how happy this makes me. If you are feeling it, I’d appreciate any donations of any size. Long time readers know it is no fun for me to ask for money, but I would do anything for my sweet bird talker.

To sum it all up….I love you internets! I love you friends! I love you family! I love you Zoe!

All my love,
Deb

[Okay, this is Sis#1 again. Apologies for the delay in posting this, but as you can imagine, this was a little difficult to type based on all my hand written notes that I took over weeks talking with Debby. More emotionally difficult than physically. At the time of her death, her blog software says that she had written 1440 entries and had 9646 comments. Who knows how many lives she touched in a positive way.

If you want to know more about my fabulous sister, please check out mem.com - Deborah Greer-Costello. If you would like to donate money for Zoe's college fund, you can either click on the DONATE Paypal link on this blog which is still active, or if you want to do it directly, please send contributions to: The Financial Advisory Group, Inc.; c/o David Jenkins; 5599 San Felipe, Suite 900; Houston, TX 77056. Please make out the checks to "College America" and in the memo field write "FBO: Zoe Costello."

At the request of many people, at some point I hope to post here a list of songs on Deb's iPod. She listened to that at home, in doctors' waiting rooms and clinics and the many months in the hospital. It's an interesting mix, and would be good to share. -S]

NEWS From The Tract Hole

Got a card from Z. you can talk and record messages.

HI MOMMY! I LOVE YOU. I HOPE YOU GET BETTER

PLAYS YOULL BE IN MY HEART BY PHIL COLLINS
I MISS HER SO MUCH

I NOW HAVE A TRACT IN MY NECK AND CANT TALK OR EAT.. SO WEAK. NO FOOOD SINCE NOV.BEINNG TRANSFERRED TO A REHABB HOPEFULLY TODAY TO LEARN TO BREATHE ON MY OWN AND WALK N STUFF.

TIM, THAT COMMENT IS WHY I ADORE YOU.

Missing You

cant type well, but thought i’d try it.

will update when i can. still accepting prayers1

love goes out to Alaska Rachel, who lost her son at 40 days. sweet baby.

miss my sweet birdtalker

Houston Battle Red

First, yay for the Houston Texans winning on Monday Night Football. Second, hey, they are going to have a big blood drive too. Sis #1 wrote about it on her Texan’s blog at the Houston Chronicle. If you go there, you also can give them my information so I get credit for that donation.

Here is the link:

Http://Blogs.Chron.Com/Texanschick/2008/12/I_need_your_help_for_the_most_1.Html

Thanks Sis # and the Texans!

And thank you to anyone that donates blood products, regardless of if I get the donation credit or not. There are thousands of patients like out there like me. Waiting every day and being so overwhelmed that people really do take time out of their days to donate my blood.

In the past, I’ve made people who have donated blood cry before. They say that they just do it because it’s kind of a habit by now, but they forget that someone actually receives those blood products. It still amazes me. I am always thankful for when I get a transfusion.

 

Today has been kind of a slow day. I am so hungry, but I can’t keep eating ice cream and softee icees. It just doesn’t feel like food to me. The mouth sores are really pretty bad and it’s no longer a taste bud thing, but more of a when I chew, no matter what it is, it feels like I”m chewing broken glass.

I still am craving an Arby’s Roast Beef sammich.

ok. Just got off the phone with Zoe. We hadn’t really talked in a few day, so we did some catching up. At one point, I thought she started to sound sad. I told her, “Honey, please don’t be sad. You know that I”m always in your heart not matter where I am.”

“I just don’t want you to die, Mom.”

” I said me, either kiddo. But everyone dies someday. It’s just that I don’t feel like it’s my time yet.”

“Me either too.” I hope that she and my mom had a good bedtime routine tonight. Some praying, reading and singling and lots of squishes. I miss that the most. Just being and snuggling with that girl.

But today I was seriously wondering, what if after this round of chemo, my body just won’t go back into remission. What if they can’t kick its butt? My muscles are so much weaker this go round and the chemo is stronger and not quite as tolerable. I’m only on the first round too. I get a biopsy in a day or two. Hopefully I will be able to get some results that make me feel a little calmer.

I can do this. Just lining up some ducks in a row. Next to my sammich.

Your assignment today is to thank a blood donor, or recruit some new ones.

More Blood Products

Any suggestions on healing bruises? Like big ones that trauma patients get?

I got 2 pints of red blood today. I always say prayers for the person that donated.

I’m tired
Still unable to eat much
Mouth sores (will try the tea, thanks, Bren/Cody’s mom) Snaggy looking rats nest in the back of my hair, but I can see that it’s thinning and falling out. I need to walk more, but I’m a peeing machine (I hate lasix!) I am finally able to stand up on my own and walk around the room a little bit.

Thank you all so much for checking in on me. I feel so weak now it’s crazy. I really just wish I was able to eat without everything tasting like fire. Unfortunately the only good thing is Gatorade.

Reading comments. Going to bed.

Mucho much love!

Donate blood if you can or make someone donate for you. It truly has been life saving for me lately.

Fast Entry. Not Much Energy

This chemo has just opened such a can o’ whoopass on me. I finished up the inpatient stuff last week and lo and behold (just because I wanted some stuffing and pie) the extreme bodily fluid explosion decided to keep me up all night. I dry hurled for hours and now there is some speculation that perhaps I inflamed a rib. I’ve never broken a rib, but I can imagine that is how this feels.

I got way too dehyrdrated for my own good and Sis # kindly drove me to the ER, where they made me HIGH!!! So they just kind of gave it the good ol’ college try and then admitted me to the hospital. A day later I got some additional chemo and have had quite a few transfusions of platelets and red blood cells. I got some additional chemo again this evening. Yet, dangit, I still have had not pie. Not that I could actually enjoy it because el diablo rojo has given me crazy sores in my mouth. So basically mashed potatoes tasted like jalapenos.

I feel way too weak this time. My muscles are just bruised and battered. I swear I do look like I’ve been beaten up. I should call Zoe’s uncle (former pro boxer) and ask how to heal the stutf.

My numbers are spooky low to me. My platelets have been in the 200′s for yers. They are supposed to be at least 140, and today they were 11. ELEVEN! I wish I felt up to eating steaks because I just would just eat a filet at every meal.

I do get pretty much dailly transfusions or bags of blood. I would much rather eat steak.

Sis #1 and Sis #2 have been visiting mucho. It’s just nice to have someone come in your room and tidy up a bit when you are weak. Sis #1 made the magical muffins again and Sis #2 helped me out with a major power shower. It’s the closest thing to a massage I think I am allowed with such low platelets.

It felt sad to miss Thanksgiving with my parents. I don’t think I have missed even one before. Zoe had a great time with the cousins that she practically passed out last night. I haven’t spoken to her often, but I am the only one that can update her list on Amazon. I don’t think she really needs much as she has so much, but her dad is buying her a bike and a DS game to replace the one she lost. I would just have to ask what games she likes. Personally, I know she likes to shop at Target and Marshalls and Blockbuster, but the girl gets way more than she needs. She’s starting to ask more questions than we can really answer. It hurts to know I can’t see her little face. I used to always drag my photos of her with each hospital stay.

Me? I need nothing except prayers, which I totally have to make myself hear sometimes. I’m trying but it’s hard to feel so scared and vulnerable to God’s will.

I can do this. It’s trying to kick my ass, but I just can’t let it.

Your assignment today is to drink something just really tasty. Right now the greatest thing I have had so far was an icy cold Gatorade. I wonder how an Icee would do on sore mouth? More 7-11′s need to make Crystal Light Icees. Then perhaps a hot tub of soda wouldn’t give you the tub with it.

Love you. Thank you so much for the comments. I”m still too out of breath to talk much on the phone, but trust me, I hear the power of the internets loud and clear!

A little humorous and a little bittersweet.

“Zoe, you know mommy is getting medicine again, right?”

“Like for cancer?”

“Yes, but I think this time I will let you draw whatever you want on my bald head. My friends want you to update your Christmas wishlist on Amazon Make sure you do that, ok?”

“Can I get that double Barbie Dreamhome? (like I have a clue what that is even though she already has the big castle).

“It’s possible, but we will have to see. Make sure you take Papa to Academy to pick out that bike you wanted. I want you to be able to ride before Christmas.”

anxious pause on her end…

“I’m not sure when I can come home, but you know I’m always in your heart, don’t you?”

“Yep. Of course.”

“Mom, I will call you back later tonight, ok? I’m watching tv.

“Sure. I will sing to you.”

“Good. I like when you sing even though you aren’t a very good singer.”

I can do this. I’ve been dreaming of my bedspread. And a dark, quiet room.

Your assignment today is about the same. I’m taking it a day at a time. I wish turkey sounded appealing though.

A Long Night With El Diablo

Ok, these Chuck Norris jokes are cracking me up.

I had more platelets today and I always try to pretend that some studly, tri-athlete, handsome doctor has donated my blood products to me. So I get extra POWAH!

I’m now hooked to my least favorite chemo, nick-named El Diablo Rojo. It gives you the worst heart burn of all time and nothing makes it go away.

I am so bruised I look like I have been in a bad car wreck. Even tape bruises me now. I hope I don’t get hit in the face, because then people might stare. *rolls eyes*

 

I tried hard to take a cute picture before my hair falls out again, but I smell kind of rank like chemo meds and my hair is getting wig-ish. It’s creepy!

Zoe has a cold, but Momo G has magical powers.

I can do this. Thoughts of home and my bed bring me home.

I’m going to try to sleep. Your assignment today is to enjoy your week and be thankful. Thankful with pie.

PS – My Bro #1 who was my donor said that I’m just having a grudge match vs. the cancer.

More Blue Than Black

I took that picture in the ER because I had just recently got a blood draw that gushed blood for 20 minutes down my arm. It’s how I ended up in the ER. I had one more blood draw after my appointment with Dr. Q where he told me I had relapsed. He was so sweet and usually jokes a lot with me, but he looked like I felt. He touched my hand when he told me, “You know what this means?” and I tearfully replied, “Yes, I’ve relapsed, haven’t I?” He said a few more things and I waited around and made some of the hardest phone calls of my life. It was so much easier the first time I found out because I was surrounded by my women of courage. It was gut-wrenching to hear this alone.

My platelets were only at 11 (they are supposed to be in the 140 range) and the transfusion room was booked. I was going to have to wait another day. (For example, my platelets have been in the 250 range for about 2 years now, so this was freakish to me) They had to do some additional tests and I got a blood stick and then walked to the lobby to go pick up my car. I was exhausted and carrying my purse and meds and sat down to look for my $15 valet ticket. It was then that I noticed I had blood gushing down my arm and all over the new purse I got for $20. I had never carried that purse before too. What a giant bloody waste now.

There was a very kind security guard and a cute occupational therapy nurse who grabbed a bunch of big towels and wrapped my arm. The guard wheeled me to the ER where I waited to be admitted to the Big House for about 24 hours. You can’t sleep there – not comfy whatsoever, but the staff is the sweetest. I feel safe here. Which makes me incredibly sad.

I am sad. Very sad. I prayed and hoped that this day would never ever come again. That I would never receive another ounce of chemo in my life. That I could use my superpowers for good to get people to donate blood, understand stem cell transplants and sign up on the marrow list to save lives. That I would live long and write and give speeches and find out my place in this messed up little world. That I could be a change for a cure for this hideous disease. Not just a ribbon pushing, consumerism wanna be cure, but one that would really finally change how they solve this disease and how they can treat people without half killing them in the meantime. Where people can live at least a better life after treatment instead of slowly re-dying. I have a faith for this cure. I know one can be found and I always felt like it might come in my lifetime. Now I am afraid that it won’t.

As I sit here and watch 8 pumps fill me up with chemo and meds and antibiotics and fluids I can’t imagine that I will still be here. My faith and your love and prayers are what I am living on this moment. My family’s care and love and support. If they could will me better, I know they would. Even my lovely Tim and Jeanne want to come see me. That means so much to me with all that they are both going through.

But mostly I am sad because my heart is in San Antonio. I barely got to drop her off at school Tuesday and I so badly wanted to jump out of the car after her to give her more and more hugs and squeezes. I don’t think she even looked back; just her usual byemom wave and skip with her ponytail blowing in the wind.

 

I would give anything to be in my cozy comforted bed snugged up with my gorgeous bird whisperer. To drive her to her first basketball practice tomorrow. Or even sit with her and watch insipid Disney shows just to be with her. I live to cheer for her team at soccer and basketball and take so much joy in watching her little body move and that fun spirit she shows with her friends. I adore them all and the parents are so welcoming and warm and just plain cool.

She is doing ok, although getting a little sinus thing because of the wonky weather, but she doesn’t really want to talk on the phone. I’m not sure if she, or any of us, understand the extent of my stay in Houston. I just want to make it all go away so I can see her. To hold her little hand in mine when she sneaks in my bed just to be next to me. I know she is there, but sometimes I just pretend not to notice so we can snuggle.

To eat popcorn and make sugar free icees and sneak off to the movies just so we can sit in the dark and laugh and giggle. When she doesn’t know it, she pulls up my shirt over my stomach a little when we watch tv in bed and she rubs my tummy and says soothingly, “Belly. Belly. Belly.” Because she knows that it’s hers. When I’m sick, she sometimes resents it and gets mad because I can’t do more, but she also can be so caring and kind and little nursemaid to mom. Her little signs, “I love my mom because I love my mom” says it all. She’s always been my girl; my mini me.

Many months I had a bad feeling about what was about to be on the horizon. I kept feeling worse and worse. And seeing one doctor after another who would blow me off. I kept having symptom after symptom and felt weak without much reason. Then the breathlessness and bruising started getting worse and I knew it was happening again. The extreme fatigue; wanting to sleep all day. The overwhelming feeling of wanting to do so much and spend time with my family and Zoe and her friends. I just don’t want to miss out on my life. On her life. I can’t. She is in my heart.

That’s why when they did my heart scan, it was huge! They were impressed by my numbers as they usually are in the 50% range for most people. But with my MUGA scan, mine used to be 76% before, but two years later, they are now 79.5. I think I impressed the staff. But it helps to have a little piece extra to help you fight.

She is the reason I must do this. I know, and will always know, that I need her more than she needs me. Her name literally means Full of Life and it’s on that strength that I must pull all of my power and resources and faith.

I can do this. I have many many reasons to.

Your assignment is to spread the word. I know from before I can’t do this alone. I may not always be able to talk on the phone or answer email or comments, but I know they are there. I am always behind on thank you notes and correspondence. But I feel your prayers. I feel your strength. I appreciate blood donations and financial donations of every amount. I don’t think anyone could understand how much your power of the internets really helps me not feel so alone. They help me in that way (like him or not) that Chemobama makes people want to scream and shout, “YES WE CAN!” When I get down and blue, I need to feel that. I need to feel the power of Chuck Norris, the strength of Uma and the power of the internets.

And I have my loves. They are the most powerful of all.

I love you Zoe love. I miss your sweet face. I promise to come home to you. I will make it happen. I will make it happen with your bird talking help. Love love.

Chemobama

Day 2 of Chemobama.

I got platelets yesterday and 4 pints of blood today. It’s helped with the breathlessness. Sis #1 brought her amazing muffins and Sis #2 is going to drop off some laundry and maybe dinner. I love my family so so very much. I’m completely blessed.

Thanks for the comments. They really mean so much to me. This has been really hard and I”m sooo so missing my sweet bird-talker. She still doesn’t know the full extent of all of this. My heart is breaking over that, but I don’t know if she’s ready to understand that I might not see her for months.

I’m still big time black and blue and it’s getting worse. I got some lasix today and man, it was crazy pee pee day too.

I’m going for a walk today. I may not be able to answer all comments and email, but thank you Interwebs. You still rock and I still love you all very very much.

I can do this. I have the POWAH of Chuck Norris.

Your assignment today is to leave me your favorite Chuck Norris joke. I also would appreciate the spreading of the word. I am back to taking the donations for the deb_fund because my insurance fell through. We are hoping to fix it on Monday because it is totally a clusterfuck. Also thanks so much for the prayers for my family. It’s so hard on them, although this time I’m still pretty scared and trying not to be. But knowing what all I am facing is skeeving me out. My hair texture is already changing from the chemo. Next it will fall out. *whimper* I wish Shoshie was here so she could paint something lovely on my bald head.

Ok. My walk is waiting! Love love.