"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!!!

Sag Harbor, Bagel Buoy for Passover

For passover and Autumn's Birthday we ventured out to the Hampton's to spend time with our Aunt Rose, presently battling ovarian cancer, and the rest of the Apollo / Chandler family. My mom joined us for the weeekend which I thought was very admirable as she really didn't know anyone there minus the few minutes she had met Autumn's family at our wedding! A three hour car ride and three ferries later, we finally made it. It was nice to get out of Boston see the family.

We celebrated passover and ate our obligatory Bagel Buoy bagels. Autumn's family owns and operates a bagel store in Sag Harbor so it's generally our duty consume as many bagels and nova and whitefish salad while we're there. Benson of course had a blast too. Funny side note, during the passover seder when we were asked to clean our hands we passsed around a bottle of calstat! We thought it was a nice modern adaptation, especially in light of the mix of health care providers and patients at the table.

There was cake and festivities throughout the weekend; though between Rose and I we mainly stayed close to home and got some good R&R time with the family.

Back on Track with Navolbine Round 5

I've began to better manage my expectations with radiation, knowing things get a little worse before they get a little better. Post one week of radiation to my cervical spine and shoulder area I feel a little stiff but every day feels a little better and I'm able to get more movement from both my neck and shoulder. This round I've also been able to avoid the sore throat feeling of last time which is a major plus.

This past weekend, on Friday, I was released from the hospital and we've had a nice stream of visitors which has been great on the morale.  I know I don't always mention everyone that visits or calls or keeps pushing me forward, but know who you are and that your company and encouragement is well needed.

Today blood counts were also sufficient to resume another round of Navolbine. It's not that we think Navolbine is the end all and be all chemotherapy treatments for my disease, but it's important to give each and every drug we encounter a full opportunity control this disease. With respects to effectiveness and statistics of drugs, it doesn't matter if a drug is 10% successful or 90% successful, rather it just matters that it does hold MY disease at bay.

This week also started the Chahuli exhibit at the MFA which is really amazing if you get a chance to come visit.

Healing Throat, More Blood, More Radiation

From the 21st floor, I've been resting my throat for the past couple of days and my strep throat times one billion has been down-classed to a strep throat times one thousand. Though I'm still consciously resting my throat, I've been slowly introducing soft foods to my diet: Cream of Wheat, Ensure, Jello and Ice Cream. By Sunday, after just three days of rest, I started to feel a huge improvement. I feel like a couple more days of rest should allow me to resume eating a wider range of foods.

Sunday also brought another blood infusion. I'm getting a little worried that I'm starting to crave these infusions. I pre-warn everyone to keep their distance from me around full moons. I can feel my incisors growing.

On Monday night I had an MRI scan of my shoulder to further investigate the pains I've been complaining about for the past month or so. Initially we scanned and consequently radiated the cervical spine. This time we took an MRI of the actual shoulder bones and rotator cuff.

Today we received the results: tumors growing throughout my shoulder bones with the recommendation of another round of radiation to my left shoulder. Things moved pretty fast this afternoon and not only were we able to schedule an appointment to plan the radiation treatment but we were also able to initiate the first treatment! The plan is to have five treatments to be completed by Saturday.

Funny side note, we were supposed to start treatment tomorrow and complete treatment by mid next week; however, my mom pulled out the Jewish card and asked if we could be finished before Passover.

P.S. No big surprise but we're skipping chemotherapy this week :)

Between Anderson Street and MGH

This past week the side effects of radiation started to set in, my red blood counts still didn't respond after chemotherapy and I had my quarterly infusion of zolmeda. These three elements combined made for a pretty painful week.

Radiation, though I may have mentioned is my treatment of choice, apparently has some wicked side effects when targeted at the cervical spine / neck area; I'm second guessing my treatment preferences. First and foremost, roughly after the 10th day of radiation a terrible sore throat sets in. For me this started about last Sunday and continued to escalate through the week. Think of a sore throat times a billion.

When I went for my regular Monday infusion my labs showed my blood counts to still be lower than we would have wanted so we continued with another modified dose of navolbine. The goal is to keep hitting this monster as hard as we can! It was decided because of my lowered blood counts and my decreased energy that I'd come in on Tuesday for a two unit blood transfusion which was generally uneventful despite living out my dreams as a vampire.

Wednesday was a bad day. I still had the neck and shoulder pains from before but now combined with a worsening sore throat and whatever vampire energy I was supposed to receive was late. Additionally the zolmeda infusion, the same medicine old ladies take to prevent from breaking their bones, leaves an achey flu-like feeling for a couple days. I could barely eat or swallow and spent the day on the couch trying to force feed anything down my throat. That night I ran a low grade fever and sweat through 4 layers of sheets! The next day I had scheduled appointments with all my doctors so I figured we'd sort it out in the morning.

On Thursday the doctor at my first appointment took one look at me and admitted me to the short stay infusion center for hydration and pain control. I was in pretty bad shape but they were able to pump me back up and release me to the care of Autumn and Benson by the end of the day. To be on the safe side we scheduled an appointment the next morning to receive more fluids.

And on Friday, still unable to talk or eat or swallow my well needed medicines, I was admitted back to my penthouse suite in the Phillips House. They actually put me in the same room I had last time!

Welcome to my life :). One day at a a time!