MORE NEWS

11:30 PM THURSDAY MAY 19TH, 2011
Jeff is out of the operating room after a 2 1/2 hour spine surgery. He will remain in the ICU overnight where they will monitor his blood counts. He was in a considerable amount of pain after the surgery but they are working on getting the right cocktail to keep him comfortable. After they woke him up he managed to tell his spine surgeon that he "looked dapper!" which got a smile and chuckle from his team of doctors. Throughout this terrible fight against the BIG "S" (Sarcoma) Jeff has still managed to keep his amazing sense of humor. We hope he will be stable for transfer to his usual room with a view on the 21^st floor tomorrow. Thanks for all of the emails, texts, love and support.

Autumn

3:30 PM THURSDAY MAY 19TH, 2011
Just a quick update for all of you...Jeff is headed to the operating room in the next few minutes (It's now 3:30PM) for emergency spine surgery as he has developed thoracic spinal cord compression due to the growing tumors. I will keep you all updated.
Autumn

A New Week, A New Treatment Plan

Starting about mid week last week I started complaining about a sciatica nerve pain shooting down the back of my right leg.  This was actually one of the initial pains that originally allowed me to identify my cancer one year ago.

Mass General Hospital is a well oiled ship and I cannot speak highly enough for the care I receive there.  Monday, after routine blood work for my Temodar treatment, my doctor scheduled me for a Lumbar / Sacral MRI.  Tuesday morning my radiation oncologist called me into his office for radiation planning and later on the same afternoon I received my first treatment, radiating lesions in my Sacral spine responsible for this new sciatica pain.  Today I received my second treatment and I should be finished by Saturday.

So it begins again!  A new week, more radiation and hopefully some relief soon.  We've been doing a better job managing my pain medicines and keeping me out of the hospital which is good, but it's been tough.  I'm still very numb, moving around is getting increasingly difficult.  My stomach is extremely bloated and, generally though I'm not in any pain, I am very uncomfortable.

Provincetown, Getting out of Dodge

Immediately following my final radiation treatment on Friday we packed up the car and headed to the Cape for a weekend of fun and relaxation, away from doctors, treatments, couches, etc. We landed at Provincetown, the furthest point along the Cape and stayed at a cute little bed and breakfast called the Prince Albert Inn. Autumn and I chuckled at the name and we were later consumed by the massive amounts of man art decorating the venue.  My mom who had made the reservations had no clue what she was getting us into; however, in all seriousness, the B&B was very cute and I would definitely recommend / return there again.

It was great to get out of dodge and experience the Cape. We really liked walking around Provincetown, exploring the little town shops, galleries and restaurants. The beaches in and around Provincetown rated among the best Autumn and I have seen since we've been on the East Coast. Though half my time was spent being pushed in a wheelchair, you cannot complain of fresh air and intermittent walks aided by a cane along sandy beaches.

The weather held out for us and really made for a magical weekend. This past month has been full of daily aches and pains, trials and tribulations. I've been ignoring my email / voicemail / blog and I do apologize. Some symptoms have quickly subsided while others have lingered for weeks. I've been ready to throw in the towel on several occasions and been quickly pulled back in by my support team. We live one day at a time, "Breathing in Hope and Breathing out Love," which each breath.

Temodar, The First of the Oral Chemotherapies

Back in April during a meeting with our oncology team we discussed that there is a decreased probability that other IV chemotherapy drugs would work as we keep finding progression with similar treatments. Therefore, Navolbine was chosen to be one of the last infused chemotherapies we'd try and next we'd switch to oral medications which act on the tumor via different mechanisms.

On May 9th we started Temodar. It's a pretty easy chemotherapy with what seems like little noticeable side effects and allows simultaneous radiation which is good in the short term as I complete this present round of radiation on Friday. Basically I pre-medicate with a Tylenol and nausea pill an hour before bedtime and then take another single pill before going to bed.

I am still very numb from the sternum to the toes which is definitely an annoyance and impedes general walking and getting around. I'm also very bloated, not that I could really tell you or point to where the bloating is coming from as it's all numb. It's frustrating but I'm optimistic that things will get better after maybe getting a little worse.

"Head to the Hills" Charity Ride

The "Head to the Hills" Charity Ride along with the entire weekend's festivities were all great hit. Thanks in parts to my friends and family along with our extended Texas Back Institute (TBI) family we were able plan fun events for everyone to rally behind and raise almost $20,000 in research money for liposarcoma research.

In addition to the bike ride, TBI held a silent auction for gift baskets, baked cookies, sold raffle tickets and sold T-Shirts featuring a Jeff Guyer original painting. Below are some excerpts from the weekend:

• "When I saw everyone wearing the T shirts this morning with Jeffrey’s painting on the back side, it brought tears to my eyes.  I cannot tell how touched and appreciative of everything my TBI family has done to support us both emotionally and spiritually during these most difficult times.   Through your friendship, generosity, compassion and love, you have given me the strength and courage to meet each new day with hope.  No words can describe my feelings and love for all of you.  Thank you so much!" - Richard Guyer
• "$8328.00!  It is very humbling to see how a team of 150 employees can together raise so much money!!!!  Congratulations to every single employee who participated by purchasing a t-shirt, helping create those amazing baskets, baking cookies buying raffle tickets and bidding on the baskets.  It is so rewarding to see how a group of people can come together so successfully for such a worthy cause.  Special recognition to the Community Outreach Committee for all their hard work and efforts to pull the event off with a special thanks  to Sara Brice for leading the efforts, and keeping us all informed with the latest bids throughout the day….. No small task and very appreciated.  We also need to recognize Liz Palos for her beautiful and highly popular cake balls!  Everyone should go home tonight very proud of what we have accomplished! THANK YOU" -Stephanie Boston, PHR
• "Jeffrey is an inspiration to us all.  Giving to the Guyer family is very easy.  You are loved by all.  In addition to the incredible personal generosity of the TBI family, the TBI partnership has chosen to add another $10,000 to the donation.  I also know that several on the team will be riding (real riding; not virtual) in the bike ride this weekend.  Hisey and Lieberman—send us pictures!!  Jeffrey, I know I can speak for all in saying Keep up the Fight.  You are in our hearts and prayers." -Trish Bowling
• "I am so honored to be a part of an organization that walks the talk. From March 25 through today, I have been blessed to have met every TBI employee and I really feel I am an integral part of this organization. I wish you all could experience what I have been able to do these past weeks. We have learned from each other and laughed to the point of tears in some cases. Today was the culmination of my experience. This was an idea that was not at all in the plans. The committee supported my idea. And then every department supported it.  And everyone who purchased a raffle ticket or bid on an item or brought food or wore a shirt or ate an item from the bake sale or worked the auction today became a part of it. It is with such gratitude that I write this. I am humbled by your generosity - in spirit and in tangible ways.  Thank you all for everything today. YOU are what makes TBI great. My family's prayers and love to Jeffrey and the whole family." -Sara Brice
• "I too want to thank each and everyone of you for all the love and support you have shown our family.  Walking in the room today and seeing how incredible all the baskets were from all your hardwork and clever handicrafts made me proud and definitely touched my heart. I LOVE the pet basket I got - actually Jeffrey and Autumn's dog Benson will absolutely LOVE it!  I have been running second in the PMC site for Team Jaguar (way after Dr. G) all this time until today when you guys wiped me out but that's OK!  Thanks for all you do and for who you are!" -Shelly Guyer

AA Miles, Cancelled Trips, More Blood Transfusion, Radiation

Hmmm... I don't really know where to start on an update for this week.

Originally we were supposed to start a 7th round of Navolbine on Tuesday and then fly to Dallas to attend both my good friend's wedding, Seth Cobbel, and the first our of the two charity bike rides already planned. We had a choice to delay the radiology scans until we returned from our trip but we felt it was better to be in the know and recent MRI tests showed progression in the spine. It turned out to be a good move as my platelet counts were rapidly dropping which could have resulted in dangerous flying situations.

I had also started to experience a numbness basically starting from my sternum, circumferentially around my body all the way down to my toes. The recent MRI scans confirmed these symptoms to be tumor involvement around the mid Thoracic spine and upper Lumbar spine. So in addition to beginning radiation therapy on May 5th at these two new spots along the spine, I also got another blood infusion on May 6th to strengthen my body for the weekend.

Lucky for AA Miles, Autumn and I were able to cancel our flight tickets and instead my Mom and two sisters came to Boston for the weekend, bringing a little Dallas to Boston.

Texas BBQ Fundraiser in DC

Over the weeekend a group of friends held a Texas style BBQ fundraiser in Washington, DC. Here's a little blurb from the event:

"Despite the weather, the bbq was a lot of fun. The menu consisted of brisket grilled by Paul, black beans and bacon, southwestern quinoa salad, veggie chili, roasted vegetables and a great dessert spread courtesy of Miya and Rose. At the end of the day, we raised $600 that will go towards Team Jaguar!

Thank you to everyone who was able to make it out to the bbq. A special thanks to Paul for getting up at 5am to slow cook the brisket - it was delicious - and to April, Rose, Miya and Helen for their extra contributions."

Thank you, thank you, thank you!!!