oops! Wrong Cell number!

Hi,
Gary's Cell Number is 802-793-0655. The other telephone number I gave to reach him was mine.

ME

Week 2 for Radiation/Chemo.

Thanks to everyone who has helped with food and driving this week. I have to say that we still have a hard time accepting all of the support. Right from the beginning of Gary's diagnosis we instantly had this support team waiting in the wings for our whole family. Kids, me, Gary. You had us covered from every angle. We need this type of thing happening in this whole world, luckily for us great minds, hearts and souls seem to be hanging close to Movegasville these days. You are the BEST!

Gary is doing so well this week that he went to work again each day for a few hours. He feels great with respect to what we fear. No nausea or constant fatigue at this point. A person who does not have many health issues at diagnosis is not typically expectedto have many syptoms at the beginning of treatent. Gary went into this pretty healthy so we hope he stays that way throughout this phase of treatment.

He is having his daily dose of Cheryl H's bone marrow soup to assist in keeping up his white blood cell count. He continues to follow the diet recommended by Guido at the Vermont Center for Integrative Herbalism. He tries to keep physically and mentally busy working and doing yard chores and reading.

If anyone wants to call and talk to him his cell phone is 802-371-7083 he would love to chat.

Talk soon.

ME

Dinner & Driving Schedule

Hi All,
The dinner and appointment times have been posted on the google calendar! You can sign up for yourself, just click on the pink box on the day you wish to volunteer. It will prompt you to "edit event", at which point put your name in. If you would prefer, just call or email me at jecca88@comcast.net or 888-7165 and I'll take care of it for you :) Thanks for all of your help!!

Treatments begin

Hi all, I haven't had a chance to write this week. We've been keeping busy though.

First off, we have the schedule for the whole 6 weeks, but I think I'll just post the schedule week by week since STUFF happens like weather, health, CAR issues (I'm in that predicament). Anyway, next week:
Monday 1/26 - 6:45pm -- Tom M
Tuesday 1/27 -- 6:45pm -- Kelley B
Wednesday 1/28 -- 7:15pm I may need help due to a out of town work situation..may not get back in time.
Thursday 1/29 -- 6pm --I'll drive
Friday 1/30 -- 10am -- I'll drive - unless some has time during the day.

I notice that most of the times are 6-7pmish and then towards the end of the 6 weeks he has mostly earlier a.m. appointments. I wonder if it's because of how he may be feeling. The med team really can't commit to telling us how Gary will respond to the treatments.
As you all know Gary and I have been reading everything from research papers, books and online chats about the Glioblastoma tumor. You get to a point where information starts crisscrossing from one resource to another and then you make a reasonable plan as to how to move forward. No one person is going to give us an answer or suggest what we should be doing exactly because everyone reacts differently to the tumor.
Based on everything we've read (and gut instinct) and anyplace we've gone to meet the experts all roads lead us back to Temador-Chemo pill daily for the year and 6 weeks of radiation. There is no way out.
With this in mind,Gary is taking his diet really seriously so he can handle the treatments. We discuss a diet that works on proteting the healthy cells and not the cancer cells. We went to The Vermont Center for Integrative Herbalism last Monday night and met with Guido a teacher at the school. He is assisting Gary with diet consultation while he fights the tumor. Guido is extremely knowledgeable and I recommend anyone with diet concerns to contact this school. We feel good about everything we have been learning so far.
Gary's reading a really cool book called "The Untold Story of Milk". Awesome information! Thanks Warren! Other books are, "Surviving Terminal Cancer" by Ben Williams. (Thanks for this one Kristy A.). This book drove me to contact Dr. Henry Friedman who is a Neurosurgeon that specialized in Glioblastoma Brain Tumors at Duke University. He surprised me on Tuesday by calling my cell phone in response to my email. I was stunned needless to say. He basically confirmed that we should continue the chemo/radiation 6 week treatment and that when Gary gets his MRI after the 6 weeks to call him back on a specific tel number that I now have written down in about 12 places. Pretty cool huh? Another book that Gary just finished is "Coyote Medicine" by Louis Mehl-Madronna. My associates at work ordered it for Gary when they heard about his diagnosis. It's a great source. The Author comes to Johnson State 2-3 times a year to work with Susan Greene. She has done workshops at our Agency and recommended this book for Gary.
Today we will be around doing reading, errands, stoking the fire and walking the puppy. Jaynie is working at the mountain and Ian is still sleeping as I write this. Hope you all stay warm this weekend and thank you all so much for everything from the food to the transports and well wishes. Community is really the wind in our sail right now for sure.
ME

Google Calendar

We have set up a Google Calendar associated with shrinkgarystumor@gmail.com. This calendar will serve as our primary schedule for meal delivery and driving Gary to his appointments. All you need to do is search "Google Calendar" on Google, sign into the account by using shrinkgarystumor@gmail.com for account and sudolfamily as the password. We will ad those individuals who have already volunteered for specific dates and duties. For those dates which we do not have anyone signed up to provide either meal or ride, we will enter "dinner" in the 6PM slot with no name attached. We will enter the words "Ride To" (location) in the time slot which Gary is scheduled to be at his appointment. If you are able to provide a dinner or ride on one of those days, please put your name in the appropriate slot. We have put a sample on today's date. If you would like us to enter the information for you, you can either email us at jecca88@comcast.net.

Dave and Jen

Dinner Anyone?

As with the driving schedule, as soon as we figure out how to make an interactive calendar we will post one, but until then anyone interesting in helping out by providing dinner for the Sudols on a Saturday, Monday or Thursday, please comment here or email me at jecca88@comcast.net with the date that you are able.
Thanks! Jen

Driving Sign Up for Fletcher Allen Health Care

I cant figure out how to post a calendar on this blog so I am just going to start this Thursday and Friday bringing Gary for treatments as planned and then ask for help starting the following Monday-Friday. Each Wednesday I will bring Gary, since that is the day that the Doctor checks in on Gary.
I think the easiest way to make this work is to have people check the blog and (pass the blog info around) write the date that you would like to drive into the comment area on this post. For now most of the appointments are later in the day/evening. Since Fletcher Allen has over 100 people a day getting treatments for 6 week periods Gary starts out as "low man on the totem pole" for preferable times. As the weeks go on he can start making requests for earlier times. SO...Please write your name and telephone number and email address along with the day you can transport. Jen and I will be keeping a calendar. Keep in mind this is a work in progress. For now just keep the driving date sign ups right on the comments part of this particular post. We will add a calendar if possible once we figure out how.
If anyone wants to email us directly with questions:
mesudol@comcast.net (Mary Ellen)
jecca88@comcast.net (Jen)
Thanks!

Information

MaryEllen and Gary
You might want to click the following link and read it. Might be a similar situation with good results!! Maybe someone in this country is familiar with it.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2588232

Dave

Back Home -30 and a miracle

To bad negative double digits couldnt kill off tumors...because today would be a killer day for sure. How about that landing on the Hudson??? Miracles do happen!!!

Well, Doc Black confirmed that we are doing well to stay with Doc Penar and the team at Fletcher Allen at this point in Gary's process. I thanked him for his free 48 page download on dealing with Glioblastoma and he laughed. He hoped we were able to get through the whole thing. I assured him we did.
We had a nice time seeing my parents, my sister and her family as well as some old friends. I even got to watch my niece play hockey. She's in 9th grade and plays varsity. Unbelievable game!!!
Thanks Pam and Dave!! We love you guys! Mom thanks for the sweaters and pencils and Dad don't worry about the animals here. Good LUCK Courtney and Steve and have a blast in Argentina!!! Oh and BETZEE thanks for ALL you do on the home front!!!

We arrived home just in time for me to turn around and bring Jaynie and Ian to Montpelier to catch a 2:30 bus to Boston. They are driving with Pam and Dave and their family to my niece Courtney's wedding in Stamford, CT this weekend. Thank you Ann Louise for offering to drive them to the bus. As it turns out the bus didn't get to Montpelier until 4:30 and then they had to switch busses in White River due to engine failure. The new bus doors wouldn't shut...at that point it was so late to make their connection in Boston. Pam finally picked them up at South Station in Boston at 8:45 and they arrived at her house by 9pm. Not bad timing and good travel experience. I don't know how we survived without cell phones back in the day. I had play by play updates throughout the evening.

Time to brave the cold and get to work.
ME

Whoops, Here is the link

http://www.sciam.com/article.cfm?id=virus-in-the-brain

Hi everyone,

Jake and I read an interesting article in science news having to do with some of the latest research on glioblastomas. Here is a link

http://www.sciam.com/article.cfm?id=virus-in-the-brain


sending love and healing
j and l

The Boston Irish Opinionated Family

Hi Gary and All,

We stole Gary and MaryEllen for a while. We love you Gary and are praying for you and your family everyday. You are the best. Keep up that great attitude!!!
We would also love to help with any fundraising events. Please keep us informed!!

Love and kisses, Pam and Dave Gaughan and many kids!!!!

p.s. - please help Dave finish our kitchen !!!

Going to Boston

Hello All! Since the pot luck on Saturday Gary has gone to Fletcher Allen to meet with Dr. Penar for a post biopsy check up. Gary is doing well. He actually worked today for a few hours in the garage. Thanks to Dave Sullivan for transporting and transcribing meds for Gary. This afternoon Tom Scarf is bringing Gary to his first Oncology appt. at FAH. He is currently lined up for 2/22/09 in the evening for the first radiation appt. at FAH if that's where he decides to go. Gary put together an awesome notebook to carry all of his med records and notes that we will most likely need. This idea has been brought up by many experts and friends. Keeping organized records of this process saves lots of time and stress for all. Thanks to all who have been coming over to help with wood and also for all the awesome food. Yesterday morning I took Gary to his dentist for a cleaning, it's recommened to have this done before he starts treatments. Interesting huh? Not really;[
Tomorrow we go to Brigham and Women's in Beantown for a 2nd opinion. It's a little easier for me to think of Gary possibly going to Boston instead of the much recommended Dartmouth Hitchcock simply because I have so much family in the Boston area. A funny thing happened this a.m. on my way to work...I stopped at Petes aka the Mobil station across from Bishop Marshall to get some gum and Kerry works there. We worked together at Topnotch a few years ago. She told me she heard about Gary on the radio last night. I said WHAT!!?? Evidently WLVB received a packet of information requesting that the station make an announcement about Gary and his diagnosis along with the TD Banknorth trust fund. Who ever did that WOW! Thanks!
I called Gary and told him right away. He was really stunned. Thanks to everyone and I'll be sure to write from Boston in the evening when we get to my sister's house.
ME

How can I help?

Whenever we hear of a friend in need, our first thought is "How can I help?"

Sat Jan 10th friends of the Sudols gathered to show Gary and family their support. In that one evening $250 was collected for "gas money" to help with trips to Burlington and Boston. Thanks All!

A meal schedule has been established to provid healthful easy meals. There is nothing nicer than to come home from a long day and have dinner ready. Contact Jen at jecca88@comcast.net if you'd like to contribute.


Once Gary and Mary Ellen decide where Gary's treatments will take place, we will devise a driving schedule for anyone interested in helping drive Gary to his daily appointments if they plan on doing them in Burlington.

A trust has been established at TD Banknorth to assist them financially while Gary is out of work. Simple donations can be made at either branch in Morrisville or Stowe or Mailed to: TD Banknorth, P.O. Box 279, Morrisville, VT 05661.

And of course the passing of positive spirit and prayer are the most appreciated ways to share. Positive energy produces positive results!

Benefit events are in the planning stages. As soon as we have more concrete plans, we will post it here. Stay tuned......
Jen

Your "other" family

Gary and Family,
I'm sure I speak for the rest of the MMSP and extended family that not a day goes by that we don't send positive thoughts your way. Please let us know if there is anything we can do, we will keep posted on your progress through this site and know that you are missed on the hill.
Your "other" family,
MMSP
Posted by Brian Bast

Good Luck Pot Luck

What a fabulous show of support! It was so great to see so many friends, and hear the well wishes of those that could not attend. It is amazing what all of our positive spirit can do. Thanks to the Isabelles for hosting!

Gary's Gas Money

Okay...
Today I was leaving the mountain when I discovered $30 laying on the ground right in front of my car. I looked around, there was no one. Of course I got super excited. I called to brag to my mom and she was like "Oh, that can go towards Gary's gas money fund." I was greedy for a second and then realized he would put it to better use than me- any extra money I seem to get my hands on goes to support the Burlington restaurants or bars. I think shrinking a tumor is a much more productive place for the money to go- this is so Gary can get proper treatment. So now my conclusion is it would be a good idea for anyone who is supporting Gary and his family to consider found money to be Gary's Gas Money. I hope you all happen to be very lucky over the next few months!
-Kali (Betsy's Daughter)

Info for Anyone Who Wants to Post

The login email is: shrinkgarystumor@gmail.com
and the password is: sudolfamily

Directions:
1)Go to shrinkgarystumor.blogspot.com
2)Sign in
3)Click the new post tab
4) Add a title
5) Say what you want to say
6) Sign your initials or name
7) Click publish post
8) View post
That's it!

Gary's Tumor story

He went in to Copley on Christmas day complaining of having a hard time speaking his thoughts in full sentences. We thought that maybe the kick in the eyeball while sparring at TaeKwonDo a few weeks early may have had something to do with this symptom. Now we know that was unfortunately not the case. The CAT Scan at Copley showed the mass in his brain and made us go directly to Fletcher Allen to get more information via an MRI. By New Years Eve day Gary had gone through a biopsy operation to find out what type of Tumor he had. The following Monday night, Dr. Penar called to let us know the diagnosis. We are currently set up for 6 weeks of radiation treatment at Fletcher Allen and he will be given pill form Chemo simultaneously. After 6 weeks he will continue the chemo treatment for the next year. He is currently not working, but has the go ahead from Fletcher Allan Doc's to do as much as he feels like he can do. Skiing, working, etc... He will try working a few hours a day this next week while we're around. He may ski if the cold and ice aren't to extreme. This Wednesday we will go to Brigham and Woman's Hospital to see Dr. Peter Black for a 2nd opinion. I recommend googling him to anyone who wants to learn about what Gary is dealing with. Dr.Peter Black + Glioblastoma Brain Tumor brought a wealth of knowledge. - ME