Holiday Update December 2008: 

Wishing Everyone a Happy Holiday Season and a Happy New Year!

I first met Deb when I was 15 years old in a study hall at good old ORR High School. I had never seen someone who could bring a different Liz Claiborne purse to school each day, and from that moment on she was my hero.

Over the course of the next 20 years Deb and I spent many a New Years Eve’s together and I feel confidant in saying it wasn’t her favorite holiday!! It was always lots of planning, traveling, cold weather, too much food, too much drink and no exercising, shopping or crafts involved – the anti-Debbie holiday. But that said, I have great memories of ringing in the New Year with Deb. Even if I wasn’t with her, she would inevitably get a call from me at the stroke of midnight – not always the most lucid conversations on my part as unlike Deb I like the too much food and too much drinking part. But they were always calls of love and joy. I’ll miss that call this year but I plan on screaming a “Happy New Year” to the moon for Deb.

We hope everyone has a happy and safe holiday season and feel free to post your Deb holiday memories. We’d all love to hear them.

Amy – the Blog Maven

A new addition!

Amy (the blog Maven) and Brian are delighted to announce the birth of their second child, a boy named David Howland Manning. He was born November 11th by scheduled c-section at Yale-New Haven Hospital and he weighed 8lb-12oz and measured 20 inches. Baby David and Amy are doing wonderfully and we wanted to share this happy news to all who knew and loved Deb. 

As most of you will remember we were blessed to have Deb as Godmother to our daughter Andrea if only for a short time. She was born just prior to Deb's diagnosis and when Andrea was baptised, Deb gave her one of her trademark quilts that we treasure.  When we (eventually) were able to come up with David's name we knew it was the right one as it had a "D" shout out to our Debbie!

Debbie Reardon Memorial Quilt Photos

This beautiful quilt was begun by Debbie and recently completed by Debbie's cousin Jeanne and presented to Deb's mother. We hope you enjoy!

A photo of Deb and her Mom - Thousand Oaks, June 2008

We grateful to Deb's sister Amy for sharing this touching photograph of Deb and her mother Diane taken in the latter stages of Deb's illness in California.

A lovely nautical thought!

I wanted to send you the picture of the boat Jimmy, Dianne and I saw when we were out in Buzzards Bay. We hope you could post it on the website, as it is truly Debbie letting us know she is free.

A boat, what a peaceful sign from her!

Love and Hugs,-- Marianne


P.S. If anyone has photos to share, please email them. Thanks!

Welcome to the Deb Blog Afterlife: Deb blog takes on a new purpose: August 20, 2008

We originally created this blog site so that Deb could get the word out on her condition to all of her friends across the country. Well, how the hell do you update on "dead"? – You can’t, so we’re going to move where no blog’s gone before. The afterlife – our life after Deb.

Let’s face it; Deb interconnected all of us. If she loved you, she was talking about you to someone, and they learned to love you too. If she inspired you, then a bit of her spirit lives in you now. Are we just supposed to pretend we don’t know each other now and move on? No! We’ll keep the blog going with things Deb would have liked to know, do, see or hear. We also hope to have a few activities during the year that are dedicated/inspired by Deb; perhaps a highway clean-up day in Deb’s name, or someone running a race with Deb’s name on their shirt. Maybe send special shout-outs to other GBM patients who are fighting today. I honestly don’t know what the future will bring but we’ll be here.

So what does that mean for you?? Keep your comments coming; we all love to hear them. Let me lay down first challenge…create your own Deb top 10. Here’s my try.

Top 10 things Deb would be doing if she were healthy and here today.

10) Be watching the Olympics, and thinking I have a better ass then they do - and she’d be right.
9) Looking at the Michael Phelps diet and thinking, finally a guy who can eat as much as I can and who isn’t fat.
8) Making a baby boy quilt for Antonietta’s new little boy and one for mine.
7) Laying out her master plan for ruling the world and decorating it appropriately.
6) Dumping another poor bastard (nothing personal Charlie☺ )
5) Tricking some new unsuspecting women into a personal fitting at Nordstrom intimates – saving the American figure one set of boobs at a time.
4) Giving “skilled” advice to someone about the most embarrassing problem they’ve ever had, without even one giggle.
3) Shopping, shopping, shopping
2) Starting to date a new guy, if he passed all of the criteria

And The #1 thing Deb would be doing if she was healthy and here today would be laughing; full smile, half a yell, and completely intoxicating☺

Love to all,

Amy M.

Debbie's Services: August 3rd/4th, 2008

Debbie's funeral mass was held today under a picture-perfect beautiful Marion sky at St. Rita's Catholic Church, celebrated by the Rev. Paul Caron. In addition to her extended family and friends from the local community, mourners came from as far a field as Chicago, Florida, Washington DC and all over New England to pay their respects and join in the celebration of Debbie's life.

Debbie's family members participated in the liturgy of the word and her nieces and nephews made for a memorable offertory procession! While there were many tears, there was also much laughter and smiles as friend and Pfizer colleague Joann Zamparo, and cousin Christy Swenson eulogized Debbie to wonderful effect. We'd like to thank Joann and Christy for kindly agreeing to share their thoughtful and touching tributes to Deb for all to see on the blog (see below). Following the mass, friends and family gathered at the Mattapoissett Kinsale Inn to share stories and memories of Debbie.

The wake for Debbie was held on Sunday August 3rd at the Saunders-Dwyer funeral home in Mattapoissett and was attended by over 200 who came and offered their sympathies to the family. The rooms were decorated by examples of Debbie's beautiful quilts including the quilts Debbie made for her siblings' weddings and a special quilt she made for her mother Dianne. Photo montages of various stages of Debbie's life were also on prominent display and the family would like to thank everyone who sent in photos for your generosity and thoughtfulness. The wonderful floral tributes from all across the nation lent the room the air of a lovely summer garden. Debbie surely would have approved.

"Radiant" by Joann Zamparo

While watching “Charlotte’s Web” with my 4 year old daughter, Charlotte creates a web with the word RADIANT. My daughter then asked, of course, “what does radiant mean, Mom?” Well, let me think now, how to define that to a 4 year old? I explained that radiant means something that shines, that you want to be near, something that is just nice to be around, beautiful, sparkly and warm. Thinking of that word now, I can’t help but think that is the perfect description of Debbie.

I first met Debbie when she interviewed me for a position. She then became my mentor and we immediately became friends. We spent many hours laughing until tears ran down our faces. Part of mentoring required I watch her and she watch me during our site visits. Traveling with Debbie was always the true definition of the word “trip”. She had a giant bag filled with what we called her “lotions and potions”, a bag the size of the average carry-on, and this DID NOT include her makeup. She stated that she required several dozen things for hair, face, skin, etc BEFORE she even got to makeup. When she asked where my bag was, since my entire suitcase was the size of her lotions and potions bag, I meekly stated that I would be using the lotion and shampoo that we got in the hotel. Up until that very moment, that seemed like a reasonable idea.

Debbie conducted herself professionally with the utmost confidence, style and wit. I learned so much from her presentation skills and her approach in obtaining what was needed for a successful clinical trial. Always impeccably dressed, down to the matching nail polish, Debbie put all of us to shame in the fashion department. However, she was more than happy to lend an afternoon or evening shopping to “help you out” with your clothing purchases, designating things either MUST HAVES, or a REAL (insert your name).

Debbie was a very talented person, too. She was the Home Depot Poster Child. Any home improvement project was no match for Debbie. She would go home on a Friday and come back the next Monday having completed a project I couldn’t even fathom how to begin. After knowing her for a very short time, and explaining the woes of having to have 2 rooms redone in our 1887 house in preparation for my baby, Debbie happily offered to do them with us. Well, we didn’t know what we were getting into, and she worked tirelessly 12-14 hour days on several weekends to prepare and paint walls that were horsehair plaster with 5-6 layers of wallpaper on them. It was during those weekends that we cemented and solidified our friendship (and when I actually began to like Country music). Through an entire weekend, we talked about our lives, families and relationships, and laughed at stories around the latest of Debbie’s dates. Debbie brought several prospective men over to our house for dinner, as we screened and interviewed, and we would always conclude that the person was not good enough for “our Debbie”. I hope she appreciated that, I think she did.

Debbie was so enjoyable to cook for. She liked many different kinds of food and I appreciate how she was clear about her dislikes, just to steer the preparer in the right direction. YES to pork and beef, NO to cinnamon and spicy and YES to lemon squares. I will never make lemon squares again without thinking of her. She had a fantastic appetite, and could easily adapt to fine dining or fast food, as long as there was plenty of it, with lots of protein to keep her going. Who else could swear by and openly recommend a meatball grinder with pickles? Who else would get off the plane in Plymouth, England and run right into the MacDonald’s for 2 hamburgers before our fine French dinner?

As the tears cloud my eyes, I know she knows that I absolutely love her so much, and thank her for all she has contributed to my life and to who I am. Radiant, just radiant, the kind of person you want to be around. My heart aches because the radiant light has faded. Debbie can only be described as a radiant person, nothing less...with all the proper accessories to match.

"Deborah Lynn Reardon" by Christine Swenson

I’m honored to have the privilege to say a few words today in memory of Debbie. Each of us here today has been blessed with the gift of sharing in some part of her life.

Debbie was so many things to so many people. She was first and foremost a beloved daughter to Auntie Dianne and Uncle Bobby. Thirty-six years ago Debbie was born into your loving arms, surrounded by all your hopes and dreams. Each day of her life she grew up confident in your love for her. I remember her as a happy baby – even with her cast and “special chair”. Seated in that chair she would take the half chewed food and slowly move her hand beyond the edge of the tray and then with a twinkle in her eye and an impish grin – she would drop it on the floor. An infectious giggle would follow making us all laugh. Debbie - your incredible sense of humor was there right from the beginning.

While you were third in line in birth order, you were certainly not a wall flower. Debbie – you readily said what was on your mind – although that quickly got you the nickname “Loose Lips” because sometimes what was on your mind was something you weren’t supposed to tell. Being 12th in the long line of cousins you were and always will be one of the “little kids”. I remember one day Jeanne and I (both “big kids”) were watching you and Amy play. We were busy predicting how beautiful you would both be when you grew up – I guess we were right. Debbie - we envied your beautiful curls, your stunning eyes, and your tall thin stature. Even among your siblings you were dubbed Gramma’s favorite. While that earned you the privilege of “yard sale adventures” it didn’t help you win at Scrabble! I’ve no doubt that the two of you will find some yard sale to frequent together in heaven searching for new treasures. Maybe you’ll finally win at Scrabble if you use some biopharmaceutical terms that use high scoring letters.

As you grew up – your circle of friends and admirers grew around you. Debbie, you have touched so many people in the short time we had to enjoy you. Your sincerity and honesty are a rare find and made you an incredible friend. Your genuine personality was one of “what you see is what you get” with no strings attached. Your spirit will live on with your friends in all the funny stories they tell.

Your free spirit led you to many places including a semester abroad in England and living the dream in California. You lived each day for the very worth of that day – having fun and sharing of yourself with family and friends. And how could I not mention your pets Joey, Nala and Radar? Each of their personalities were shaped by the love and care you gave them. We’ve all seen the fabulous picture of Deb with Nala and Radar. Even your pets were better for being a part of your life.

While most of us knew and loved you before your diagnosis of glioblastoma – we have admired and been inspired by your determination and fight against such a formidable enemy. You educated yourself on the disease and your treatment options. While managing your medical care, you courageously continued to live your life, on your terms with your sense of humor intact. For many of us, your blog let us stay connected to your battle with cancer. We rejoiced with you when your MRIs were clear and prayed for you when they weren’t - hoping against hope for a miracle that would let us keep you with us. Unfortunately, God had other plans and sent his angels to bring you home.

We will miss you more than words can describe. You will always live in our hearts and the many memories we treasure. We’ll need to somehow hang onto the fact that it’s not the amount of years in your life that is most important, but the amount of life in your years – and Debbie their was a tremendous amount of life in your short number of years.

I came across the two poems that I thought would be fitting to include. The first is for you Auntie Dianne and its called Mother and Child – of course it’s for you too Uncle Bobby but the title does says mother.

Mother and Child

By Kelly Cummings

I was there, I sat with you
The vigil through days and nights,
Pleading with heaven that I might take your place.
Heaven did not want me, but you, my beautiful girl.
I was there; I held your still hand,
Never to clasp mine again as it so often did when you were small.
How is it then, that I look for you in every crowd?
The breeze blows open my door; I turn to see if you are there.
Footsteps approaching, I raise my eyes expecting to see you,
Hands in pockets, all smiles.
Then I remember that heaven has taken you.
My girl, my Debbie
That I could sing to you, just one more song,
That I could hold you in my arms once again
If only for a moment.
How is it that I see you around every corner?
How is it that I hear your voice upon the evening breeze?
That lovely gossamer thread that binds a mother and child together,
That part of me that was you; the part of you that was me,
Is still tightly woven together my daughter.
I hear you on the breeze because you still sing (and probably dance too - though hopefully not the “Elaine from Seinfeld” one)
Out of heaven that gossamer thread
Will lead me home to you
Wait for me my darling daughter
I love you.

Knowing how much we will all miss her I’m sure that Debbie would have had something to say about it – she always did! The second poem seemed to say what I thought Debbie would if she were here. It’s called “I Wanted You to Know”.

I Wanted You to Know

by Teresa Shelton Bright

I was sitting here in heaven
And having a wonderful day
I started thinking about you
And all the things I didn’t get a chance to say
I don’t want you to worry about me
And please don’t shed any tears
Because I will wait for you in heaven
If it takes a hundred years
Everything I had on earth
I have in heaven too
My first day here
My body became brand new
(no more cancer, I have all my hair, and I look fabulous if I do say so myself)
It is really pretty here
And I love my new home
Although your heart is broken
Because my body is gone
My love will always be there
As you go along the way
Just take a peek inside your heart
There is where I’ll stay
Know that I loved my family
And all my friends too
My thoughts will be with each of you
Your whole life through
And when tomorrow starts without me
Don’t think we’re far apart
For every time you think of me
I’m right here in your heart

Rest in peace dear Deborah Lynn. Our world will not be the same without you in it, but it is truly a better place because you were here. We love you!

Deborah Lynn Reardon

June 7th 1972 - July 31st 2008

Debbie passed away peacefully in the loving arms of her family on the morning of July 31st, 2008, at 10:50 AM EST at the Tippett House hospice. We, on behalf of all her many friends, pass on our deepest sympathies to Deb's family at this difficult time.

The wake will take place this Sunday, August 3rd from 4:00 - 8:00 PM at Saunders-Dwyer Funeral Home in Mattapoisett, MA followed by a service of Christian burial at St. Rita's Catholic Church in Marion at 10:00 AM Monday August 4th.

The funeral home have an obituary for Debbie on their website. The family have requested friends coming to the wake to bring photos of Debbie (please put your name and address if you wish them to be returned). For those planning on staying overnight, we suggest the Fairhaven Hampton Inn.

Donations in Debbie's name may be made to the Cancer Hope Foundation, 568 Constitution Ave. Units F&G, Camarillo, CA 93012.

Deb Update: Saturday July 26th, 2008: 19:00 E.S.T.

As many of you will have read in Amy D's post yesterday, Deb was moved by ambulance to the Tippett House hospice in Needham, MA on Friday. She's being made comfortable in the beautiful countryside surroundings of the former manor house. Deb's family are by her side and are reading the blog postings to her constantly. Today, the funeral of Deb's step-brother took place in Boston. Please spare a thought and a prayer for Dan's family today.

Visiting hours are flexible. Please check the house's website for details and directions.

Deb's Update: Tuesday, July 22nd, 2008: 19:00 E.S.T.

Currently Deb is resting at her mother Diane's house in Tiverton, MA where Amy M. saw her this afternoon. She has got a room at a lovely hospice on the outskirts of Boston. Lots of green trees and lawns to look out on, big brick fireplaces and all the help and support the family and Deb are going to need. If she remains stable, the family will drive her up Friday.

At this stage, its probably best to let the family have some quiet time and we'll desist from the sharing all the hairy details as its gone beyond that. If there are major developments, we'll keep everyone appraised. In the interim, you can assume we're losing a little more of our Deb every day. 

Now, it's time for community and we echo Amy, Deb's sister's request for stories and tales about Deb that you'd like to share with her family and friends. The family read the blog daily and gain great comfort from knowing how much Deb is loved and how she's impacted all our lives.  It really helps and can definitely make them laugh as well!

Deb's Update: Monday July 21st, 20:00 E.S.T.

Hi all,
See below for updates on Deb's visit to Dana Farber and on Radar's relocation to the Briard Rescue in Arizona.

Amy Doherty's update:

The family took Debbie to Dana Farber today and met with Dr. Wen. He agreed with our choice to stop the Avastin and chemo at this point. Debbie is staying with our mom until we can get her into a hospice residence, hopefully in the next few days.

Also, thanks to everyone for all your kind words and great stories about Debbie. Keep them coming because it gives us something to smile about. If anyone wants to send me pictures by email or regular mail (along with stories or quotes), I would appreciate it. I want to put together a scrapbook of happy memories. My email is amyrdoherty@verizon.net and my address is 53 Westview Terrace, Westwood, MA 02090.

Debbie sends her love to everyone.

Amy Doherty

Radar's Relocation:

Charlie & Antoinette arranged for Radar to be transported to the Briard Rescue center in Ajo, Arizona. After a long road trip Radar arrived safely and is settling in well. If you'd like to learn more and possibly make a donation to help secure Radar's future upkeep, please check out www.briardrescue.com

Thanks!
Antoinette

BRIARD RESCUE and HAVEN is a 501(c)3 non-profit corporation established to provide a safe place for Briard dogs, and the occasional Briard wannabee, during their time of transition. It is a place for rehabilitation and care of Briards who find themselves without a home for any reason. No Briard will be turned away. The Haven is a privately run facility, funded by private donations, Ebay auctions, adoption fees and bequests.

Deb's Update: Saturday July 19th, 2008: 12:01 PM

Hi All,

Quick update. Deb is on her way home today! She’ll be back on the east coast by this evening and will be staying at her Mom’s (Diane). Nala will be taking her own flight into Boston but Joey gets a spot with mom on the airplane. Radar is headed to the Briard rescue to hang out with his buddies there.

I know all of her friends on the West coast will miss Deb. We are going to try and take as good care of her as you all did; Kimmie, Mindy, Charlie, Brigitta, Ant and all the others who are her West coast family. Karma points for you all!!!

Deb heads up to Dana Farber on Monday to see how treatments on this coast will work. She is still in a rapid physical decline. She is not in pain at this point and everyone will be going the extra mile to keep her comfortable. Her mental state is also declining so all contact will be done through the family. Diane will be welcoming visitors who can make it and will give us info on how to contact her when she’s back and settled in.

We had a bit of trouble with posts but are back and running now. Keep your good wishes coming, the family needs them!

WE LOVE YOU DEB!!

Deb's Update: July 15th, 2008: 11:00 AM E.S.T.

Hi Everyone- Amy the Blog maven here.

I'm going to take over writing the blog entries again for a bit. As you may have known or suspected, Deb's GBM has progressed significantly, and it's time for her to move back to the east coast.

Deb had a MRI yesterday that confirmed the loss of function we have all be witnessing over the past month or so. The Doctors have warned Deb's family that the decline will continue and most likely accelerate dramatically in the coming weeks. Her mom Diane and her sister Amy will be going out on Thursday with the intentions of bringing her home.

I've posted a picture I took last week when Deb was visiting - it's of my sister Eileen, my daughter (and Deb's god-daughter) Andrea and Deb. I thought you all might want to see it - Deb looks great. From my perspective, one of the hardest things is that Deb is not entirely clear on what is happening to her right now -I personally think it is hard-wired into the human race not to. She is struggling with how to communicate with all of us. Her family thinks that it would be best if we post our good wishes here. Deb will contact people directly when she can.

We'll keep posts coming as we hear things. I know I speak for all of her friends when I say we love you Deb!! Reardons all, take care of yourselves and let us know if there is anything we can do for you.
A.L.M.

Deb's Update: June 16th, 2008: 9:00 PM E.S.T.

Hi guys,
Just wanted to give you an update on how today went.

My MRI was not 100% perfect. I did show some good results in the area that the new chemo combo was given for... However, there appears to be two area where there are small hazy/tumor things.

So, Dr. Cloughsey had decided to give me the decision to change my treatment: Chemo combo or non-chemo drugs. I chose the non-chemo. My mom and I discussed information with him to show how this may work for me, so I chose THE DRUGS!!!

I still feel good but please continue your support any way you can!

Big hugs to you all...
Love,
Debbie

Come meet Debbie when she's back on the East Coast at the Hayden/Reardon Annual Summer Bash!!

Saturday July 5th, at noon.

Host: Mary Reardon

When: Saturday, July 5, 12:00pm

RSVP by Evite

Phone: 401-683-6354 or 508-822-2176

Hi Everyone! For food, fun, and friends, don't miss this year's party! Come join us for the usual...volleyball, BBQ, jet-skiing & swimming off the dock. Please check your schedules and try to stop by to join the fun - let us know if you'll be able to make it!

For all those who know and love her, Debbie Reardon will be visiting from CA and would love to see everyone!!

View Larger Map

Deb's Update: May 27th, 2008: 20:00 EST

Hi All,

I just wanted to give you an update on to what sorts of things have been going on with me since the last update I wrote...

My chemo combo of Avastin/CPT-11 continued to be difficult and it basically kept me in bed from Day 1 through Day 4... lots of nausea and fatigue. I'm sure you can imagine that watching too much Jerry Springer and Maury was not fun!!! Of course since further progression has occurred I have been started on a new combination: Avastin/Carboplatin.

The new combination has similar side effects but they will last longer since the Carboplatin chemo is only dosed every 4 weeks instead of every two like CPT-11 was. So, stay tuned as to how this one hits me. In addition to the side effects, my attitude has to push forward to continue to fight.

My next MRI is on June 16th. The support that my family has for me is amazing. They have all decided to come out to CA to be with me during the next MRIs... The next one, my mother is coming for a week. I am so excited to have her here so we can connect at a deeper level.

On a social side of things... when my sister was here for the last MRI, we went to another musical: "Mama Mia"! This was one that both of us had seen but it was a happy and funny one to see the day before my MRI! In addition, we went to Nordstrom to get me some new bras! I thought that would make you laugh... but think of it this way, it's always good to get measured by a truly trained bra lady! I'll leave it at that :-)

I'm still going to the yoga studio to remain calm... I'm also still meditating about 75% of the time depending on how I feel in the morning! I have continued to walk the dogs if the weather isn't too hot! As you can see, I really haven't added much fun stuff to my "downtime"...

I'm still out of work as I continue to fight this GBM cancer! Keep your hearts strong for me and I'll take both fingers and toes crossed too!!!!

One last thing: as I get closer to my family/friend visit in July, keep a lookout for the directions to the Portsmouth, RI (July 5th) party... You are all welcome to come :-)

Love you lots!!!!

Debbie

Amy Doherty (Deb's sister) Update April 14, 2008 8:00 AM

Debbie had another MRI today. The news was not as good as usual. She has progressed and it appears there may be new growth in both her left and right frontal lobes. Dr. Cloughsey put her on a new chemo drug, so she is now doing a combo of Avastin and Carboplatin. Her next MRI is in four weeks to make sure she responds to this new treatment. Debbie will be in New England July 3rd through the 10th. She's excited to catch up.

Thanks for keeping Debbie in your thoughts and prayers,

Amy Doherty

Deb's Update: April 14, 2008 8:00 AM

Hi All,

Here's an update of what's been going on over the past 6 weeks...

As you know, I've been done my radiation since February 18th. In general it feels good to be done going for radiation at 7:15 AM. But, I am still losing hair!!! Not my idea of fun, but I may have to finally get a wig... I'm sure you guys are thinking what my wig would look like. I'm in wig denial and I am ignoring that the hair falling out could be do to my chemo combo! So, of course I figured I could write a song to have fun with the topic... it goes something like this:

" Debbie's hair is falling out, falling out, falling out... Debbie's hair is falling out, she's the thin haired lady.

She'll take some tape and tape hair on, tape it on, tape it one... she'll take the tape and tape hair on since she's the thin haired lady.

Tape didn't work so she got some hats, lots of hats, tons of hats... tape didn't work so it's all about hats to the thinned haired lady. "

That's all I've written for that Debbie's version of the London Bridge song!... It's just a little support for myself to get me prepared for wig shopping if (or when) I have to do that!

I have decided to take a short term disability (an 8 week Leave of Absence) so I could take a break and see how I feel taking the Avastin/CPT-11 chemo. It seems to get tougher for each cycle, but I'll take it as long as I am responding to it! I miss going to work, but taking time to 're-group' has gotten me back on my routine life: walking the dogs, making my own lunch and dinner, and going to Yoga several times a week.

I went up to San Francisco to see Antonietta and her 'family' (her pets and husband). Since it was right after the chemo on March 10th, I had to behave and sleep! Lots of naps and sitting around to chat with Ant... Of course, we did do one interesting thing: going to a drag queen brunch at a wonderful hotel! Nothing I need to say about that, right? Overall, it was a nice visit. Charlie watched my dogs while I was away and he's now connected with them even more!

I am still off of the Decadron steroid and I am finally starting to lose the fluid in my body. I have been told that it takes just as much time to lose the fluid as it did to gain it!

Guess what happened on April Fool's Day? Radar was neutered! His in-tact male days are over!!! He seems happy and it hasn't seemed to bother him. He was actually good at the vet so I guess he was ready!!!

My sister came out for a week to visit and to give me support for my MRI on April 7th. Her support was great! Dr. Cloughsey showed us the recent MRI and previous two MRIs. His good news was that no new tumors have come into my frontal lobe area and that he had "nothing bad to say". In addition, he thinks that the recurrent tumor is responding to the chemo! I was really nervous about that day since the morning that Amy and I got into the car, we saw that my car had been broken into! Although I'm a car door locked addict, I didn't lock it on Sunday night... So, basically the robbers just pulled the door open and stole several things (except for my $1.99 sunglasses!!!). Not a confident way to start that day, huh? But, obviously the day ended and I was happy!

When Amy was here we went to Pantages and saw Wicked! We had great seats (front row of the Mezzanine!) so the view was amazing!!! Before my sister's arrival, Charlie and I had gone to the CA Science Center and saw the Body Worlds 3 which is amazing! I never thought I'd be that interested in seeing these deceased, real bodies with most of their skin off!!! But, since it IS very interesting exhibit I asked Amy and Kimmie if they wanted to go! So, we all went and they enjoyed it too... obviously this is a highly recommended exhibit if you're not creeped-out when looking at real bodies and every part of those body!

Time for me to get going since I have to head to the neurologist's office. I think I'll also walk the dogs for a few miles this morning before it gets too hot.

That's it for now! Hugs to everyone...
Love,
Debbie

Deb's Update: 3/1/2008: 10:00 AM EST

Hi All,

I figured I was way overdue to write the blog update so since I woke up in the middle of the night and cannot get back to sleep, I figured there's nothing else to do! Here goes...

Hopefully you have seen my sister's message that my last MRI done on Feb 25th was better than the January 3rd one! What a huge sigh of relief for everyone (me, my dad, Charlie, the chemo nurse, Dr. Cloughsey, and the rest of my friends and family). Dr. Cloughsey unfortunately sent a nurse practitioner in my room before he came to see me which actually scared me before I saw the results... I heard her talking out in the hallways to another nurse practitioner about me completing 6 cycles of CCNU (totally wrong!) and that Dr. Cloughsey was going to want me to go onto Carboplatin (wrong hopefully) and that they would look over my chart to see about getting me on a clinical trial (no way Jose in my opinion!)!!!

Thankfully it ends up that they didn't have any up to date records in their personal computer about me! The CCNU was the stuff that I became sick on... not sure if you remember the major rash, the headache and vomiting which then showed up as a major tumor size increase in the recurrence area. The intention of sending those two nurse practitioners in my room was just to have them do the neuro exam. I was still nervous because they really didn't say much to me in regards to my MRI results or what the treatment was going to be the next time.

As always the next step is to have Dr. Cloughssey come to the room and have me (and my supportive guest) head down to the room to see the MRI results on a huge screen computer that you get to compare 4 MRIs on! So, Dad and I followed him down the hall which seemed like it took FOREVER and once we got there, we thankfully heard Dr. Cloughsey say "your tumor shrank". He continued to show me the comparison between the last 2 and 3 MRIs viewing the entire scan both in contrast and not. It was hard for me to tell what the percentage of shrinkage was so of course I had to ask him if it was greater than 50% or less than a 50% reduction? Greater than 50% reduction is a partial response and that is what I desperately wanted but he basically said the shape has changed since the last major swelling is down but he can obviously tell that it is responding to treatment! It is unclear if the response is from the chemo or the radiation, or both combined. I guess it doesn't matter what it was, but I will continue on the chemo/ Avastin combination.

A big, big, big sigh of relief for me and my dad that day at UCLA... After the Dr. Cloughsey discussion and all of the good news phone calls that we made, Dad and I went to the chemo area for me to begin cycle 2 of the Avastin/CPT=11 combination. The chemo treatment was done at 3:00 PM and we were able to head up to Thousand Oaks without being in the 405 freeway rush hour traffic.... I knew it was a good day!

I'll have to take a step back to let you know how the end of Cycle 1 went, the RT, my dad's visit, etc... I just couldn't help but start with the MRI! Chemo side effects seem to be the same each time that I get that stuff! I start with a gurgling stomach during the CPT-11 dosing and for some reason I have to urinate like a racehorse during that 1.5 hours of that stuff... Of course I have to make sure that I go to the bathroom right before I leave in case I'm in major freeway traffic... The other side effects during the IV dosing is that the CPT-11 also causes some twitching in my body/face muscles which is totally weird but it literally just happens during the IV and not afterward thankfully. Again, that chemo causes me to have some cramping in my feet which is somewhat painful and usually starts to occur around 5 to 7 days after that treatment. I can see/feel it coming on and I just brace myself and try to stretch it out. That cramping hurts more than I would imagine, but it usually only lasts for about 5 minutes. However, it's on and off, so I just focus on keeping my feet stretched out and massaged on the arch area.

On another note, I finished the RT on Monday, February 18th. Again, what another great day feeling that I was able to be make it through that tough 25 day treatment. I was able to continue to do the RT at 7:15 AM in the morning and still stick to my 'normal' work schedule. I usually work from home about 3 days a week and in the office 2 days. It keeps me going to head into the office to see everyone, to attend meetings to learn about all of the changes that are upcoming in the year of 2008. The one thing that is really taking my confidence down a bit is the hairdo that I have now! Way too much bald areas after this RT is all I can tell you. I didn't think that there would be such an area that was missing so much hair. Think of it this way: the last RT bald picture that I sent you last year is nothing if you saw this post-RT bald scalp! So, I guess I shouldn't have gotten a haircut where she trimmed and whisped it, huh? I guess it'll grow eventually. In the meantime, I told my dad that I should just do a comb-over to cover my lovely pink scalp! He said it's not too obvious but I guess that's what your friends and family would say, huh? Good support is not a bad thing!!!

So, no haircut pictures coming unfortunately, but maybe it's time to start taking pictures with some hats on? I obviously wear a baseball hat while walking the dogs for hair and sun reasons but I have also purchased a few hats to wear out and about at the mall or someplace like that. I won't wear a hat into work, but I did get a few large cloth type headbands which are technically my "comb-overs"!!! Hopefully the hair will start to grow back in the next 3 months or so. I will definitely keep you posted on that one... you all know how hair vain I am!

Let's move on to the steroid usage... both Dr. Cloughsey and Dr. Ahn (the RT Oncologist) want me to start going down on that dosing again. On Monday I will go down to just 2 mg in the morning (half of what I am taking in the AM now). I'm not sure how long that'll be before heading down even more, but I do know that the weaning off that stuff takes time. I have already started to notice (just slightly) the swelling decrease in my face has decreased a bit after stopping the 4 mg evening dosing... I have also definitely noticed that the stress and overactive energy has gone down a notch too so that is another plus of getting off this steroid.

I can't wait to get back into the routine dog walking and yoga which I have not been doing often during the last few months... Since my dad left on Wednesday I have gotten back into the dog walking groove. The good news is that both Radar and Nala were able to walk daily with my dad so they were happy during his visit. I just have to take it one day at a time since I wasn't speed walking for the past 3 months every day! It's time to get my muscles back on track which as you know is not a quick process. But hopefully since my body has been in shape previously, it'll get back into it's groove quickly!!! I will try to add the yoga to the evenings because it's relaxing and a good way to calm me down prior to heading to bed.

I wish I could move onto the subject of major socializing but I can't! Can you believe that one? Honestly, the item that I was focused on was eating and cooking during the past few months. Now I have to figure out what the heck I will be cooking since it's just me! I guess I have to half the recipes so that I don't eat Udon Noodles with vegetables 6 times in a row!!! I'll figure it out but that'll challenge me since I'm not really into portion/serving sizes... I do not want to have to buy new Summer shorts or pants due to my "big butt" !!!

Charlie is in between jobs so he is happy that it is easy for him to come up to Thousand Oaks to spend time together. Since my dad is not going to be here, Charlie said he will go to UCLA with me when I get my chemo until he starts work again. Who knows what card game we'll play with just the two of us but I will take suggestions! It's going to feel good to get into the routine of Charlie and I heading out to Santa Monica for a beach walk, doing our relaxing errands at Target together or eating a nice dinner (he's a good cook!) either at home or at a nice restaurant (he refuses places I love like Denny's!). I will keep you posted on how things continue to go with Charlie. My hope is that he doesn't get a new job out of the Los Angeles area, but I know that whatever is supposed to happen will...

There is one thing that I have planned to do after my next dosing of chemo: I am headed up to San Francisco for 5 days to see Ant and Paul. I got a cheap ticket through Southwest so I figured that I would just head North via a flight instead of driving. I always look for cheap flights to Houston to visit Jodi and also to Providence/Boston/Hartford to head back East for a visit, but I haven't been able to get those two trips planned. I also have to make myself relax a bit more per my doctors so I need to follow their guidance... they know what slowing down will do to help my immune system more than I do I'm sure! Interestingly enough, the RT is a treatment that does make people tired over time even though I have finished it... I have noticed that I am more tired these days.

And one final thing: I did reward myself to get a new outfit!!! It's all about the store Anthropologie where the clothes are both unique and very "Debbie" ...

I will try to write blog updates as often as I can, but with just doing the chemo every two weeks and MRI every 6 weeks it just doesn't seem like I have much to say. The next chemo dosing will be Monday, March 10th and then March 24th. The next MRI should be on April 7th...

That's it for now... it's finally at least 5:30 AM so I think it's time for me to meditate and then eat breakfast! Or, maybe I should just lay in bed to see if I can go back to sleep!

Hugs to you all...

Debbie

Amy's (Deb's sister) Update: Feb 25th, 15;15 E.S.T.

Debbie's MRI today was great! The tumor shrank and she doesn't have any more swelling. So, she can (slowly) come off of the steroids! Yeah!!! She will have a repeat MRI in 6 weeks. GO CELEBRATE, DEBBIE! I think a new outfit is in order.
Sending you lots of love,
Amy

Deb's Update: January 31, 2008 16:30 EST

Hi all,

It’s finally time for me to give you an update, huh? Not too much to tell you except for what I do day to day medically, work, and socially.

So far I have undergone two treatments of the Avastin and CPT-11 chemos. It hasn’t been that bad, but it seems to be just a full day to head to UCLA for lab work followed by lunch and then the 3 to 4 hours of the IV treatment. This type of chemo combination will be given every two weeks so as of right now, Friday is the day of treatment. I have had two treatments for this cycle so far: Jan 11th and then Jan 25th. The side effects seem to be consistent per treatment: scratchy throat for a few days after dosing, cramp in my arch of my right foot (weird, huh?) and it seems like my skin is getting really dry. Don’t laugh, but in some locations like the elbows and hip area I’m like sandpaper queen… not lovely areas to touch!!! In addition, my sinus and nasal area is stuffy so it’s hard to realize if it’s due to the chemo combo or if it’s due to the chemo PLUS the radiation.

I have finished 14 days of the 25 days for the radiation…. So, it feels good to be over halfway done. The bad news: the hair pieces where the radiation is going are falling out… same as the last time but at least it’s a smaller area. Hopefully my hair that is not affected will cover the bald area! Thankfully, I was born with a bunch of hair so at least I still have enough to look “normal” if you can believe that… Sit down when I tell you this one: I seem to be close to weighing 150 lbs instead of the 132 lbs I weighed before starting the steroid crap!!!!!!! (And believe me, it’s NOT MUSCLE!). It’s fluid retention and I’m sure it’s extra fudge fat, pretzel fat and God knows what else… The recent good news is that I’ve just started to go down on the steroid dose which will be a slow process, but I cannot wait to get to the end of it.

But, there is some good news in regards to the new face shape and hair… I got a new haircut/style! Yup, I decided to have it cut a little different just to bring me up a notch mentally. So, I now have bangs which I straighten and push off to the side and then I have the rest of the hair wisped and curly… it looks cute if it’s not flat after I nap or sleep at night. I’ll try to post a picture of the new hair when I get a chance. My guess is I will wait to do that as I go down in the steroid dose.

My dad is still in town and will be through the last dose on chemo for cycle 1 and the follow-up MRI. The date of the next MRI will be on February 25th… so, fingers crossed that there will be a stunningly small or completely gone tumor! I feel good and both my docs (oncologist and radiation oncologist) think I am doing much better than lots of subjects/patients with a recurrent GBM… so, I continue to focus on beating the odds! I have to continue to focus on what I eat to keep my immune system boosted… so, you guessed it, I still eat lots of fiber (short grain brown rice, oatmeal, barley, beans, etc…) and tons of veggies (and sometimes fruit) with it. Of course there are days when I demand pizza for a meal but that’s been my lifetime staple from the time I was born I would say! I’m sure you COH folks can remember the day I won the pizza eating contest… J Dad will be here through February 27th.

Based on the photos that I used last time I gave you a quick update, my brother Jimmy came out here to visit as well. Jimmy was here a Monday through a Friday (Jan 7th – Jan11th) which was great. I of course am still working, so Jim and Dad did quite a bit together while I was busy working on Amgen’s campus or here at home. Interestingly enough, Charlie decided that he wanted to pick Jimmy up at the airport J He likes my family that he has met thus far and for some reason, he likes to connect to the brother and father stuff! He always comes up to Thousand Oaks to visit for the weekends and hangs out with my dad to watch football, or to work on something in the house… it’s good for me so that dad has someone else to do stuff with too! I’ll even head out and do errands like grocery shopping or going to Yoga while they hang out, nap, and watch sports stuff on the TV. Charlie’s support of what I’m going through continues to amaze me…

Jimmy, Dad, Charlie, and I had a nice time hanging out and playing cards together one night that Jim was here… If you can believe this, both Dad and Charlie liked the red wine when we were playing Hearts! Not sure if you know that card game but it was fun for all 4 of us! A few weeks later I had another party with Kim, Dad, Charlie, Brigitte in which Kim made one of my favorite dishes: a Kim Enchilada casserole… We were all stuffed and happy about the flavor of that dinner. Kim had of course made a great cake for dessert and some of her Spanish rice that I always love too. We then played cards so fun was had by all again!!!

That’s it for now… I actually just ramble and don’t over-review what I write these days. But, I’m still the Debbie you all know with just a little word finding difficulty now! J

Big HUGS to all of you…

Debbie

Deb's Update: January 15th, 2008

Hi all,

Just wanted to give you a quick update: I'm obviously on the Avastin/CPT-11 combination chemo and so far so good (Day 1 was 01/11/08). Of course I feel like I need lots of stuff to suck on like a Lifesaver or some other candy that eases my throat. That seems to be the main thing that's affecting me from the chemo thus far.

Yesterday I started on the Radiation Therapy (RT) and will be treated for 25 days (Mondays through Fridays only). It only lasts about 7 to 10 minutes so I am hoping that it doesn't bring me too much fatigue as time goes on. No warning that I should not drive while doing the multi treatment stuff so hey, I won't ask the RT doc if he won't say anything to me! Doing lots of fiber and veggie cooking although it isn't always making me 100% happy... it's all about increasing my autoimmune crap to get this damn tumor out of my head... fingers crossed that all the organic products will help me along with getting this tumor killed!

That's it for now... just wanted to give you a quick update... you will see some pictures soon that I sent Amy and Brian!

XOXO,

Debbie

Deb's Update: January 6th, 2008 9:00 PM


Not even sure where the heck to start…. I guess it would be easiest if I could since or dance a song over the course of the past month and a half, huh? I have to admit 110% that I will not majorly re-read this since I just want to get you some text…. Got it????

Because there were so many things from happiness, personal emotional changes, well deserved time off of work, visitors, email, phone and blog contact from tons of friends and family members….aaaah, I’m sure you can all see where I’m coming from. So, I will just try to do a summary (you usually know what that means, but this time, there are daily changes so I’ll just try to do a summary so you can see what’s been up…)

Back in mid-November of 2007 when I had an MRI that showed recurrence basically stabbed me…. My emotion was prepared to see that the little dots were gone and they weren’t. Prior to the MRI, I was happy and that I would just go on my way to smile, dance and joke with everyone from the Chinese food server to the cash register person at the Whole Food grocery store that I shop at multiple times per week. That was not the case…. Being alone after an MRI showing recurrence stunned me. I prepared to fight harder…

I am sure that I have written lots of my opinions on that MRI and what my research mindset was, what I would need to do, what I would need to take for poison/chemo etc… But, I decided to go it alone and to get myself some bigger ‘boxing gloves’ to fight the crap out of this white area! I took the dramatic pictures of the “F%$K Cancer” shirt to the serious but emotional yoga pose outside of my numbered Thousand Oak Tree in my yard… I was determined to fight the hell as much as I could!

So, from the day of recurrent diagnosis I was given an prescription for CCNU. This was a type of chemo that was just one lovely pill that I would take on Day 1 and wouldn’t need any more until around Day 42. Side effects of CCNU were said that they wouldn’t be too bad: low PLT counts and several other low blood counts. So, I was told not to rollerblade…. Bummer, huh? Radar wasn’t happy about that one! I hardly had any side effects to the CCNU which made me feel like it must be doing something right…

Around two weeks after the Day 1, I headed to my radiation oncologist to do my CT scan/screening for the next step: Radiation Therapy (RT) plus chemo. I decided to wait until the holidays were over since there was no 100% perfect time to start all that since I was going to have visitors with me from Dec 20th through around mid February 2008. I would continue to work and see how things could go while on treatment.

Unfortunately, the day after the CT scan on 11/30/07 I began to have a rash and my body was not agreeing with the contrast stuff that I must have received that day. From that point forward, I began to have headaches and was starting to feel more and more tired. I blamed it on the time as the cycle of CCNU went on. The headaches and nausea/vomiting did continue as time went on beginning around Day 21. Because I really felt like shit, I headed to UCLA to meet with the neuron-oncologist that I was interested in when I first went there for potential research down the line. Thankfully, Dr. Cloughsey decided to do an MRI on Day 35 (Dec 19th) to see what was actually in my head.

If you are as smart as I am (or usually am!), you will notice that in just about two weeks, my body decided it was going to run a hellish path to a worsened recurrent tumor!!! There was lots of swelling, some bleeding and the growth of the tumor was around 4 times the size it was in the CT that was done on Nov 30th! That sucked….. Now my gloves needed to go from being a GIGANTIC boxing glove to being a BRIGHT PINK SOMETHING!!!!!!!

I started on some new drugs that day as well: Decadron which is a lovely steroid that is making me want to eat about 5 lbs of fudge in two days out of my refrigerator last Christmas/Valentines Day/etc…. I will have to post a picture at some point as you will be somewhat impressed with the round, round and more round cheeks I have now! I’m a bit shocked so I guess I gotta give up fudge, huh? Maybe it’s time for M & M’s???? Interestingly enough, I have a book for people with an A blood type that should definitely be avoiding sugar especially with a brain tumor… so, it’s time for fiber and veggies instead of sugar for me!

So, in the meantime I was continuously seeing all the docs that were in the treatment equation: Local Thousand Oaks Neurologist, Oncologist here in Thousand Oaks, Radiation Oncologist here in Thousand Oaks, the UCLA Neuro-Oncologist, the Cedars-Sinai surgeon and that may be about it… It’s honestly all I feel like I do these days. There are tons and tons of opinions and they certainly all have what they think would/could be best for me based on the tumor location, the pathology type stuff about it and my current neuro mannerisms. In all their opinions, they see me as neurologically “normal”-ish. Whatever that means…. I know I’m not perfect, but if I can stand straight, walk on a fine line, balance and still have strong arms, I will also consider myself somewhat ‘normal’.

Per Dr. Cloughsey at UCLA, he wants me to start on the Avastin plus CPT-11. It is apparently a strong treatment option if you have a certain type of GBM tumor and they are surprised at how many good results they are seeing. If they can see stable disease in half the subjects that are taking that treatment, that is a great option. So, my fingers are crossed that my body will agree with that treatment.

Dr. Ahn the RT here in Thousand Oaks’ opinion is for me to start the RT right away as well. He spoke with Dr. Cloughsey a few hours ago and it is in both their understanding that I will respond to the combo of the chemo plus the radiation that I tolerated well this time last year. On a third note: Dr. Yu thinks that he can operate anytime since the location is perfect right near the frontal part of the frontal lobe in the left side of my head. He even thinks it’ll be fine to do it directly after treatment… he likes to take crap like that out of people’s heads!

So, as you can see, I finally finished last week with some sense of relief instead of stress, tension and Decadron/fudge rage! My hope is that by the end of this week, I will have been able to make an informed decision as to exactly what will be done and when to this lovely head of mine J Time to shrink the tumor, time to shrink the tumor, keep on shrinking that tumor……….

I know I have not told you lots of additional details in terms of exactly what is measured, how, when, etc… but at least you can see what the heck has kept me in limbo over the course of the past month and a half!

On another note, my Mother and her friend Helen were here from December 20th through January 4th, 2008. They were here for 2 full weeks so it was nice to re-group for me since I was out of work and got to spend some time with my Mother. She did her most important task: She’s the cabinet lady! She re-did the molding on the cabinets in the bathroom so that room is complete! Big hugs for that cabinet process Mom… We didn’t overdo too much but had a nice time two days after Christmas seeing a Catechism show and going to the Melting Pot for a nice Fondue dinner… the two of them really liked that. Of course, I’m not a big time Catholic person, but I enjoyed the show as well! My Dad arrived the night of the 3rd and should be here for around 6 weeks (give or take what I need him here for). In addition, my brother is coming this week for a visit but again, my intention is still to continue working since it feels good to have a goal of what to do when.

New Year’s Eve this year Charlie and I went to a nice restaurant in Santa Monica which was good. Great food, but I will not get started on the whole reservation thingy….. let me just say, we waited for over 2 hours to sit at a table in a drafted area for the hundreds of dollars of food! I did most of the talking, but it turned out to be a decent successful night. I’m going to leave it at that!

Jodi came out to visit from Dec 29th through January 1st. It was a short but nice visit since she just wanted to come, hang out and spend some quality time with me. It’s always tough with lots of visitors but Jodi and I seem to figure out how to make it all work out.

I am sure that I have forgotten WAY too much to tell you guys, but I just wanted to do the quickest update as possible and to hopefully leave you guys up to snuff as to what is going on in terms of treatment.

Please continue to ask me questions, give me your support, cheer for me, laugh and cry for me (hell, I do it here and there these days!) and just give me hugs and kisses when I’m going through the tough times. I love you all and cannot wait to see you when I’m back East for a visit…. Don’t worry, I can’t do all the visiting to your own households, but we’ll all have to plan a party!!!!!!!!!

Hugs!
Debbie

Amy's (Deb's sister) Update: Friday January 4th, 2008: 20:24 EST

Debbie met with Dr. Yu this afternoon and got some very encouraging news. He was optimistic that he could operate and remove the tumor. The current plan is for Deb to go on Avastin as soon as possible, continue taking steroids to keep the swelling down, have a repeat MRI in about 6 weeks, then possibly have surgery at that point. Debbie will post more details soon.

Amy's (Deb's sister) Update: January 3rd, 2008: 21:00 EST

Debbie went for another MRI today. The swelling is down significantly and the tumor has not grown in size over the last two weeks. She has a second opinion scheduled tomorrow at 11 a.m. PST with Dr. Yu, the doctor who did her initial surgery, to find out whether he thinks she can have surgery. If surgery is not possible, she will likely try another chemo drug, Avastin, which has been extremely successful in treating recurrent tumors.

Debbie has been feeling much better these days now that the swelling is down. She will hopefully send an update in the next few days. Her mom is leaving CA tomorrow and her dad is arriving in CA this evening. Keep the prayers and positive thoughts coming. The comments and get-well-wishes really keep her going. Lots of love, Deb.

Keep up the fight!
Amy