Scan Results on Par for 2010

Lung: Stable appearing 7-mm nodule in the left upper lobe as noted above. No new nodules are identified.

Left Lower Leg: Interval decrease in size of lower leg sarcoma with interval decrease in central enhancement representing central necrosis and response to therapy.

Spine: Diffuse metastatic disease involving the clivus, cervical, thoracic, and lumbar spines, as well as the sacrum and iliac wings. Slight interval increase in size and enhancement of several lesions involving the thoracic and lumbar vertebral bodies when compared to 11/11/10, which might indicate progression of disease rather than treatment effect

>>>>>>>>>>>>>>>

So what do you say?!? I felt the less than ideal news was pretty much on par for a crappy year. We are upset that there isn't more drastic decrease in tumor size like we saw in the previous set of scans and we are obviously upset about the reading on the spine. I've spent the day talking to oncologists and various experts and they seem optimistic about the results quoting "objective stability." But it doesn't take a doctors to tell you things look bad.

I'm looking forward to a better year next year, wishing daily for a cure of this disease and a break from chemotherapy so that doctors can intervene and fix everything the cancer has broken.

"Breathe in Hope, Breathe out Love."

Ode' to Texas

Oh Texas you will be missed again but not for too long as there will be many more trips in the future.

I wanted to thank everyone who made this visit to Texas so special for Autumn and I. Thanks for all the house calls, lunches and dinners, brownies and peanut brittle and just the good times catching up. And to those of you that I missed during my visit to Dallas, which I realize is more and more people every time I check my email, I hope that we can get together soon and catch up! Please keep emailing, calling, and of course, reading my blog!

P.S. We were darn lucky to have arrived back to Boston! Our flight was one of the first flights back into Logan Airport after the "Blizzard of 2010!"

Tour de Texas (Part 2 - Houston)

Friday night we arrived in Houston just in time to attend our cousin Rabbi David's Friday Night Shabbat Ceremony at Beth Yeshurin. Our entire Houston family was there including my Great Aunt & Uncle, all their children and grandchildren and my mom's two sisters with all their families too. My parents along with my younger sister, two nieces & Benson also made the drive down to Houston for the event.

The ceremony was really beautiful and very touching to have everyone in the same place, worshiping and praying for the same cause: my recovery. Those that know me well know that I'm not a very religious man but I do think that we're all connected in some way and every bit of prayer helps.

After dinner we had a huge Shabbat dinner hosted at David's house. It was so nice spending time with the entire family. The last time we had all been together was at my wedding before this whole ordeal.

The next day we literally sat around my Aunt's house waiting to eat three more meals before we could return home :). Needless-to-say I have had no problem maintaining my weight throughout this most recent course of chemotherapy. Before we left we celebrated everyone's winter birthday and then hit the road. I got to ride in the back of Kim's swagger waggon, reclined and watching movies on the drop down flat screen on the way back to Dallas. Awesome!

Tour de Texas (Part 1 - Austin)

Thursday / Friday Kim, Dan, Autumn and I took a road trip to Austin. On the drive to Austin we made the obligatory stops at both the Czeck Stop for kolaches and Robertson's for some beef jerky... yummy! We arrived to Austin just in time to enjoy lunch out on Lake Austin and then checked into our hipster hotel along South Congress called Hotel San Jose. I highly recommend the venue if anyone gets a chance to visit Austin.

We cruised around Austin briefly showing Autumn the city's highlights: We walked through University of Texas campus; We drove around the state capital building; We browsed the shops along South Congress; We ate even more Mexican food :)

The evening started out with drinking "Michelata's" at our hotel's lounge. It's basically a bloody mary beer replacing delicious bloody mary mix with Soy sauce, Worcester sauce and Tabasco. They served the mix in a glass with ice and gave you the beer separately, giving you the opportunity to ruin your own beer. Out of all of us, only Autumn liked the cocktail... yuck!

Some local friends joined us for dinner at a great pizza place we walked to from our hotel and the night ended with cracking a bottle of champagne, sitting in our own little hotel patio area, listening to tunes and enjoying the cool weather.

In the morning we of course ate a Mexican breakfast and traveled to Mount Bonnell for a little morning hike before we hit the road to Houston. It was really beautiful at the top of Mount Bonnell with the city's skyline in the distance on one side and overlooking the huge mansions along Lake Austin on the other side.

Eating our way through Dallas!

I've been in Texas now for a little over two weeks and probably eaten over 12 enchiladas, 4 pounds of red meat, two entire fried chickens and enough tortillas / beans / rice to completely cover my body, possibly 2 times over. The image above is from a dinner at Smoke in Oak Cliff and yes that's a single rib! I've been having a blast catching up with old friends, family-friends and colleagues. I've been eating very well, strictly from a delicious standpoint instead of nutritional point of view, and since Autumn's arrival I have held up my deal in not allowing her to go to Costco and instead showing her around town.

We saw a lame light show in Frisco, took a tour of my old stomping grounds near Victory Park downtown, walked around uptown / West Village area, saw the christman decorations in Highland Park, tasted all the cupcake shops Dallas has to offer and got to spend some good time with friends and family. I feel much better with Autumn's impression of the Big D.


Benson has also been having a great time. Him and Max haven't stopped playing since we arrived in Dallas and he has become quite comfortable with the rules as a dog in my parent's house: using the doggie door to go outside to play, scattering his toys all over the place and pissing / shitting in the house. I'm not sure he'll ever want to leave.

30th Birthday Surprise

Despite all efforts to spoil the surprise, Autumn, my mom and the rest of my family and friends pulled off the best surprise party for my 30th birthday! Now, after the fact, it all makes sense: the cryptic conversations, the random emails, the cascading lies and the bizarre activities. I feel so silly for not seeing this coming.

Apparently it began many weeks ago when Autumn began to periodically hack into my email account to extract friend's email addresses, many of these people she had never met before. Then she crossed this list with everyone who had ever sent a letter or card (yes I have kept all of them!). And with this list an evite was sent.

Back at the Guyer ranch in Texas everything was status quo; however, on one specific occasion my mom passed a computer over my lap that alluded to a party being thrown for my birthday. She quickly covered this up saying that it was lie so that she could get out of some other social engagement which I believed (you must understand that my mom lies to her friends all the time and this sounded absolutely normal).

Later on in the week while I was trying to coordinate dinner plans with some friends I received an email that reference something like, "See you Saturday." I disregarded the response and then at the dinner the following day everyone was raving about a fun birthday party in Fort Worth and persuaded me to come.

As Saturday approached, I honestly forgot about all the emails and hints towards a party. I was looking forward to a nice dinner with my family and attending this birthday part in Fort Worth. When Dan (my brother-in-law) told me had had to escape his house and wanted to see "Tron" I obliged, though I thought it was a weird request in the middle of such a beautifully sunny day.

After the movie Dan raced back to my parent's house; I mean literally raced back! I was scared for my life and was just so happy to get out the car that I barely noticed the cars stacked up outside driveway.

And then I walked into the door ... SURPRISE!!!

What a treat! It was really so touching and special to have so many people come out to celebrate. Thank you to everyone who helped organize the event and to all my friends who blatantly lied to my face to make this all happen!

You can access the pictures by clicking the image below.

Surprise 30th Party

MD Anderson Consult

Intially when Autumn and I were planning a trip to Dallas we were wanting to plan around a consultation at MD Anderson.  We figured MD Andersin was geographically far enough from Boston to hopefully have access to different clinical trials than MGH/Dana Farber and we have lots of family in Texas.

After literally months of fighting with the insurance company to get approval and after the persistent letters from my primary care doctor in Boston, we received approval to move forward and I began compiling all my medical records to send to Houston.  Specifically we wanted to consult with Dr. Benjamin, the sarcoma specialist at MD Anderson.

A few days after receiving all my records I got a call from Houston saying, "Dr. Benjamin has personally gone through my records and not only agrees with my diagnosis and treatment thus far but also knows the doctors that are treating me in Boston and Dr. Benjamin thinks I'm in great hands."

I guess that's all I wanted to hear!!  So we're not going to MD Anderson :)

Living Life, Not Planning

One of the major lifestyle adjustments that Autumn and I have made is that we don't make a lot of long term plans anymore. We live our lives one or two weeks in advanced and plan accordingly. There's no certainty in how well I'll feel or when I'll be able to receive treatments so we take each day and each week one at a time.

This new lifestyle made for fun adventures this past summer. Thursday evening would roll around and, if I was feeling okay, we'd search the internet for a fun destination, book a hotel and jump into the car after work on Friday. We attempted to seize every available opportunity and take advantage of the good times.

I had really forgotten about this lifestyle shift until this most recent trip to Dallas. Over the past couple days I've been quasi-planning a trip to Austin and simultaneously talking to my family in Houston to see we could wrap a Houston leg into our road trip. As things started to work out with visiting my Houston relatives I was met with adversity from my Dallas family / siblings: Why are you going to Houston? That wasn't apart of the plan? Why weren't we invited?

And that's the whole point; there never was a plan. We live our lives one week at a time and if we find an opportunity that sounds within reach, we take it! There's no certainty in what tomorrow may bring; we don't wait around for things to happen; carpe diem!

My plan turned out so good that now the entire family is meeting us in Houston for a mini family reunion. Should be fun!

All Sytems Go

Blood work looked great, my treatment is right on schedule and I feel pretty good. Though I missed my nurse mommies in Boston, I've kept busy working from home and preparing for my upcoming flight. I'm looking forward to recovering at the rent's house.

I'm really excited to visit Dallas. There was a time when I thought I would never be able to return, never to revisit my family's house and relive childhood memories tooling around the metroplex. I feel so fortunate and lucky to both have the means and health to travel again.

As everything has gone to plan I will be in Dallas from December 7-27. After the first couple days of recovery (after the 9th) my schedule is completely open and I'd love to see as many people as possible during my visit. As of now my schedule is pretty open so please do contact me and lets set something up!

I'm quite certain that my travel bag is going to be checked. Among my clothes I have roughly 40 individually packed sterile syringes for my blood clotting medicine, 4 nausea prescriptions kepts at room temperature and another two prescriptions in a freezer bag that have to be kept cold!

Dallas Bound

This should be exciting.  Autumn and I have been planning a trip to Dallas from December 17-27.  Additionally, I've been invited to a work meeting in Dallas on December 11th.  Being that my next treatment starts December 6th, I am planning on traveling to Dallas December 7th, still hopped up on steriods, and spend the next couple days recouping at home before my meeting.

As a contingency plan if I cannot start my chemo on December 6th, I will return to Boston December 12th, start December 13th and fly back to Dallas with Autumn on December 17th as originally planned.  Isn't traveling around chemo schedules fun?!?

The plan will be to bring Benson on December 7th and have him spend time with his cousins, nieces and grandparents until December 27th.  And in the event that all goes well, and I can start my chemo on-time, I've already gotten approval to work from Dallas December 12-17.

Thanksgiving Recap

To say I have things to be thankful for is a far understatement.  So much has happened this past year and first and foremost I am thankful to be alive and well in this beautiful world among such great company.

I am thankful for the support of my family and friends.  I am thankful for all the letters and emails and little gifts that have brought smiles along the way.  I am thankful for everyone who has had the opportunity to stay at Hotel d'Guyer and everyone who has been with my family through the good times and bad.

I am thankful for modern medicine, without which I surely wouldn't be here today.  I am thankful for everyone's generosity who has donated to my cause helping to fund these amazing new clinical drug trials like the one I'm on now.  I am thankful for Yondelis my little sea squirt friend from the west indies that is actively killing my tumors.  I'm thankful for my team of doctors and nurses who take care of me and endlessly work at finding better treatments for this disease.

And mostly I'm thankful for my Autumn.  She is my pillar of life and hope.  She keeps me going on a daily basis, bringing me up when I'm down and making me laugh and smile for no reason at all.  I am so thankful to have her by my side!

Some Encouraging News

Excerpts taken from the final radiology reports of last week's scans:

Chest CT: Stable left upper lobe nodule, consistent with known treated metastatic disease. Other small peripheral branching nodules are no longer seen, and may represent treated metastasis.

Cervical Spine MRI: There are minimal changes compared to prior study.

Lumbar Spine / Sacrum MRI: Redemonstrated is a pathologic compression fracture of the L5 vertebral body with epidural soft tissue tumor extension that is still present, but decreased in size when compared to the prior examination. No new pathologic fracture is identified in the lumbar spine or sacrum. No new metastatic lesions are identified within the lumbar spine.

Left Lower Leg MRI: The mass demonstrates decreased size compared to prior study, now measuring 13.1 cm compared to 14.7 cm in longitudinal dimension, and 5.6 cm compared to 7 cm in axial dimension.

>>>>>>>>>>>>>>>>>>>>

The nature of the quantitative data from the left lower leg MRI allowed me to crunch some numbers:

• Longitudinally there was an 11% decrease in length.
• Axially there was a 20% decrease in diameter.
• If we put these two dimensions together and assume a cylindrical shape (πR² x H), then we can calculate a 43% decrease in the primary tumor volume!!!

This last value was so high that I had to go back to my engineering books and make sure my percent decrease formula was correct!

>>>>>>>>>>>>>>>>>>>>

The oncologist we saw today was extremely pleased with the results telling us that he had never seen such a positive response after only two rounds of Yondelis. We'll take it!

And I started my treatment today! My liver functions were the lowest they've been since I started this new clinical trial, dropping into the double digits :)

The End of the Chemo Brazilian

And just like that my hair grows back, soft as a rabbit's foot! For a touch, please make a reservation at Hotel de Guyer. We've added a new aerobed to our accommodations.

This was pretty funny: Last weekend Autumn and I completed our monthly crusade to Costco and the guy checking us out was hassling me about using a friend's membership card. "No really that's me!" I said and he replied, "The member on the card should always be present at checkout." I guess the shaved head, glasses and full beard threw him off!

Lately I've been feeling pretty good. I've had a great two weeks of work / normal life and next week I start another infusion (round 3 of Yondelis for those keeping count). This coming weekend starting yesterday is the annual CTOS (Connective Tissue Oncology Society) Meeting in Paris, the largest annual "sarcoma specific" meeting and my hopes are that something great will come out of the combined brainpower of the world's sarcoma experts!

Until then I've been consuming a lot of my free time researching new cancer treatment methods, cancer prevention diets and holistic lifestyle guides. It's an interesting obsession but exchanging red meat for fruit and grains, cutting out my nightly pint of ice cream and reducing the intake of chemical preservatives can't be bad for you.

Yesterday was a long "Day-o-Scans." Five hours of CT and MRI Scans after which all I got to take home was a lousy chemical aftertaste from the contrast. I swear there's no reason to have all those scans every 6 weeks. I scheduled a meeting with a radiologist on Monday to devise a better CT/MRI follow up plan.

Round 2 Concludes

The treatment has gone by without incident. Monday and Tuesday were a breeze, likely due to the high dose steroids. Wednesday was a little rough, but today I started to feel better again.

Today was a beautiful day in Boston, sunny and around 75 degrees. It felt like summer! I had to run an errand which brought me through the public gardens and as I was passing through, I paused there for awhile. Benson and I found a nice tree to lay underneath and we watched the squirrels and ducks play in the park while listening to people nearby playing the saxophone. I stared at the sky for a long time thinking how small we all are and how beautiful and precious life is.

In the evening I had arranged a man date with a friend and we sporatically decided to catch a Bruins game. The TD Garden is a quick 10 minute walk from my place and it sounded like a fun idea; plus I hadn't been to the garden yet! We went to the box office and asked for two of their cheapest tickets which the lady whom was helping us informed us would be $130/ticket. So we turned around and left!

Upon exiting the garden a gentleman approached us and asked if we wanted to see the game and gave us free tickets! So we turned around again and went back inside! A great game and a great "conclusion" to this week's treatment. I still feel a little weak but things are on the rise and the worst is definately over.

A Rocky Start but Still a Start

This morning I arrived at the doctor's office at 7 am for some prelimary blood work to see if I would be able to begin my next treatment in the afternoon. Afterwards I returned home and waited for the results. About an hour later I got an email saying my liver markers were 139 and they need to be 137 to start treatment. Doh!

I pleaded with my doctor to submit my request to start today to the protocol team but they responded, "Cannot treat!". Two points off, i was frustrated. We had already been delayed a week and a half and now I was being delayed again for what is likely within the limits of lab error.

I spent the rest of the day working and distracting myself from the morning's events and in the afternoon I decided to stick with my scheduled treatment appointments and try one more time. I went back to the doctor's office, gave blood and waited again. This time the markers came back 130!

I went upstairs to the infusion room where i got hooked up, loaded up with steriods and then they sent me on my way.

Strike Two - Liver Slowly Heals

I didn't get to start chemo today either! My liver enzymes are still too high so we're going to push the next blood test back until Monday.

The good news is that we have three friends visiting this weekend and I'll be feeling great; however, I'd be lying if I didn't say we were all a little disappointed that I couldn't start my treatment. Although Yondelis isn't the end all drug to my treatment, the literature from recent studies is very promising. It's about a coin flip whether or not I'll respond to the drug and if I do then there's a great chance that this drug can be helpful.

We're keeping our heads up and pushing through. I did find a yondelis study protocol that said patients can be delayed up to 3 additional weeks after the 21 day cycle. Tomorrow will make week 1 of the delay.

Breathing in Hope and Breathing out Love...

Minor Setback

The day started at 8 am with getting my port accessed / blood work drawn. Then we had a doctor's appointment to write the orders for today's chemo.

At the doctor's office they said that my liver functions were too high and we'd have to delay chemo until later on in the week. I guess they're not trying to poison me after all! We're going to try again on Thursday.

Two Weeks of Vacation

The past two weeks have been unbelievable. Out of Yondelis recovery I felt great, even normal. I worked a full two weeks and over the weekends Autumn, Benson and myself went on two great road trips. Over the past two weeks I've almost forgotten about cancer and doctor's appointments, and have just enjoyed living life my with Autumn and Benson.

The first trip was for Benson's first birthday. He had always wanted to go to "The Black Dog" and so for his first birthday we promised him a trip to Martha's Vineyard. We all had a blast navigating the buses and visiting the little fishing towns around the island. Benson played on the beach, ran around all the little parks and was offered treats everywhere we went (cookies, dog treats, ice cream!). We walked a ton (3-5 miles/day) with very little pain. I think I wore Autumn and Benson out and by the end of the day, ALL of our feet were aching.

The second trip was for our One Year Wedding Anniversary! We drove up to the White Mountains in New Hampshire to take in the foliage and return to nature. It was a great weekend of hiking nature trails, exploring waterfalls and traversing New Hampshire's covered bridges. Benson spent most of the time off-leash with a grin on his face that said, "This is what my four legs were made for!"

Returning home from the weekend on our actual anniversary we ceremoniously ate our wedding cake.. which is still delicious!

And tomorrow starts Round 2 of Yondelis.

I thought this was nice :)

3 Full Days of Work and Still Kickin'

I don't want to get ahead of myself, but I really feel great! I have lots of energy and some of my persistent pains seem to be decreasing. The past three days I've been going into the office and putting in full day's work. This represents my longest and most consistent work streak since I was diagnosed!

I seem to be tolerating Yondelis well. Yes, it took a little while to recover and during the recovery I remember feeling fatigue like I hadn't experienced before with the last chemotherapy regime; however, once the recovery period was over, it was gone!!! Mental clarity, energy, alterness, I almost feel normal :)

I'm also starting to grow my hair back! You can start to see the hair folicles on my head, my face is growing peach fuzz and tiny eyelashes are sprouting up. I feel like I'm watching a garden grow, though I must admit I've never had luck with plants.

This weekend is Benson's 1st Birthday and he's always wanted to go to The Black Dog on Martha's Vineyard. So we promised him we'd take him. It's supposed to be a beautiful weekend so I'll be taking lots of pictures!

Uma Pequena Notícia Boa

Several weeks ago we submitted blood samples for genetic testing. Based on my family tree and medical history they tested me for BRCA 1/2 & p53 mutation, both which would shed some light on the origin of my sarcoma.

Today we received the results and everything was negative! Although this doesn't explain the presence of my sarcoma, this is great news and means that I'm not at any elevated risk for developing any additional sarcomas or cancers for that matter. I have the same cancer risks as anyone else. It also means my parents/grandparents are off the hook for passing down bad genes.

As far as why I developed a sarcoma, my geneticist explained that either I just have bad luck or I developed the tumor based on environmental factors. Which brings me to my initial hypothesis: Diet Coke, McDonalds (minus their vanilla cones), artificial sugars and microwaves give you cancer! Watch Out!

It's Still Chemo

The delivery of Yondelis is much better than AIM; a simple 24-hour infusion over a 72-hour hospital stay where someone is taking my vitals every 4-hours. Sleeping in my own bed is a bonus and I feel fine during the delivery of the drug (during the infusion) which makes me feel like I gained an extra day. This is all true.

The recovery of Yondelis is much the same as AIM. Even though it's less toxic, I get the same nausea and fatigue I got after AIM. I guess it's still chemotherapy. As with AIM, I'm sure I'll get more used to the side effects of Yondelis and the next rounds can only get better.

Three days out and I'm starting to tailor down my nausea meds which is an improvement over the 5-6 days with AIM. If this works out, it'll mean I can get two good weeks of being normal and one week off for medical leave; thus gaining an extra week. But before I get ahead of myself, I will rest and keep you updated.

Due to the AIM washout waiting period / chemo date shuffle, I have the next three weekends to enjoy chemo free. Mom, Dad and the sisters will be in town this week which will be a good kickoff to this little break.

Beginning the Yondelis Clinical Trial

Yondelis is a pretty cool drug. It's based on a derivative of the "Sea Squirt" marine organism found in the reefs along the Caribbean Coast and in the Mediterranean. It's been used in human trials since 1996 and is approved in more than 150 countries worldwide, though only available through clinical trials in the US. Here's a link to a neat video about how the drug works: How Yondelis Works.

It's administered outpatient (at home) through a 24-hour infusion using an electric pump. What this means for me is that I get to carry around a man-bag for the next 24 hours. The picture above is the contents of my man bag. The littler critter was a gift from one of the nurses at the hospital. He looks over my chemo.

Starting my first round of Yondelis turned into an all day affair. We entered the hospital at 10:00 am and after registerting at the outpatient infusion center, meeting my new nurse, pump training, etc it wasn't until 3:00 pm that I was hooked up to the pump and receiving the chemo treatment. Next time should go smoother.

And then I was told to go home and enjoy the rest of the day!

Just like that, I was off on my way, receiving chemo as I went on with my day. In the evening we went to a Thai restaurant for dinner with the family, both Mom and Dad Guyer are in town. I think I can get used to this!

Round 4 Scan Results

Last Monday, after finishing the remainder of the MRI scans in the morning, we met with the oncology team to discuss the results, and it took a good number of days to accept their findings: there is still no significant disease progression; however the tumors / lesions haven't shrunk as expected. Again, this was not the news we were expecting, after all I'm feeling much better than when I was first diagnosed, but I guess we'll take it.

These results struck conversation between the various departments of my oncology team and everyone agreed that systemic control of the disease using medicine (chemo) is still the best path to manage the disease. Surgery would delay the chemotherapy treatment while we'd have to wait for my body to heal and radiation could complicate the later surgical resection of the disease.

The conversation turns to a discussion of which chemotherapy regime to continue. The current regime of AIM (adriamycin-ifosfamide-mesna) has served me well. It's most notably gotten me out of a wheelchair; however the AIM regime has done little to actually shrink the tumors and the various cancer markers show that the effectiveness of the drug is starting to plateau. Additionally, the AIM regime is no walk in the park and is very toxic to the body. I could only get two more rounds of AIM before the drug starts to adversely effect my heart.

As a second line defense there's a new drug under clinical trial called Yondelis which has shown to be very promising at combating STS (soft tissue sarcomas) and even more promising for my M/LS (myxoid liposarcoma). It's an experimental drug in the US but approved in more than 150 countries worldwide where it's probably even used as a first line defense. Yondelis is also about a 1/10th the toxicity of AIM and currently there is no cap on how many times I could receive the treatment. We're given the consent form for the clinical trial and are sent home to make a decision between continuing AIM or starting Yondelis.

It must be understood that Tuesday (the next day) I was scheduled to go into the hospital to start my 5th round of AIM. So a decision had to be made fast.

The next three days began an emotional roller coaster, researching this new clinical trial and deciding which treatment to continue. After a lot of research and discussion we were leaning towards Yondelis, ditching the 60 year old chemotherapy drugs for the newer modern medicine, swinging to the fences to find a cure. (*** If you were wondering where the sarcoma donation dollars are spend, Dana Farber has been instrumental in brining Yondelis to the US and this is just one small piece to the other research and clinical trials they're doing.)

Tuesday morning the hospital called and informed us that I wouldn't be able to start my scheduled AIM treatment until later in the week, possibly Friday or Saturday. We took this as a good sign as it allowed us a little more time to get more opinions and to make a final decision. Meanwhile we started the screening process to enter the Yondelis clinical trial.

Tuesday evening I received a call from my doctor stating that I wasn't eligible for the clinical trial due to "no progression of the tumor site." Additionally we were told that we would have to continue the AIM regiment as an outpatient instead of inpatient due to an unforeseen influx of patients to the hospital. These two statement weren't taken lightly. 1.) We were leaning towards this new medicine hoping and thinking that it could have a chance to kill the tumor. 2.) AIM is hard enough to do inpatient; outpatient would require dragging myself back and forth to the hospital for three days.

What were we to do? We really only had once choice now: continue AIM as an outpatient. On the bright side I'd get to sleep in my bed every night without being woken up every four hours, and I wouldn't have to be subjected to hospital food for three days. I tried to convince myself that outpatient may have some serious advantages. Additionally I could start my treatment Wednesday (tomorrow) instead of waiting till the weekend.

Wednesday morning we woke up, packed a day bag to take to the hospital and headed over to my doctor's office to begin Round 5 of AIM as an outpatient. As an outpatient the first thing you have to do is to meet with your doctor to write the orders and make sure your blood counts have bounced back high enough to handle the next round of chemo. At the meeting, after talking through the past couple day's roller coaster ride, we asked to see the final reads on the MRI scans from Monday (it takes up to 24 hours to get a final radiology read on a scan so a portion of the reports reviewed at Monday's meeting with the oncology team were only preliminary reads).

And there we found it: "Progression of osseous metastatic involvement." Before you get the wrong impression, it's really not that bad and our second opinion said that the scan might have been slightly over-read. Again, not the news you ever want to hear but just enough bad news to get me in the clinical trial, which we really do feel has a good chance at killing this disease.

We left the hospital and spent that and the next day (Thursday) celebrating our small win. Yondelis starts on tomorrow which works well because I would have needed to wait until Friday anyway for the AIM to washout; so no time wasted!

Kol Nidre Mochaccinos?

On the "day of atonement" I spent the majority of the day in CT and MRI machines! It sounds eerie and generally unappealing, but I had the foresight to bring entertainment: adavan and stand up comedy CDs. Whereas during my last set of scans I spent my time counting sheep and singing songs to myself, this time I listened to Chris Rock, Dane Cook and Dennis Leary, trying my hardest to suppress laughter so that I didn't move my body.

Unfortunately they only scheduled me for five hours of scans instead of the required eight hours of scans so I have to return on Monday before visiting with my oncology team to get an MRI of my brain and C-spine. We're very anxious to find out the results of the scans, and I will post an update on Monday evening.

The picture above is one of me drinking Mochaccino flavored contrast for the CT Scan. I think I'll stick with Starbuck's version.

Beware of the Zebras!

After my diagnosis and intermittently since I was diagnosed I sometimes lie in bed at night and think to myself, "Why wasn't this caught earlier?" Since we moved to Boston I've been regularly visiting my PCP doctors and thinking back on the events leading up to the diagnosis it seems clear that something was wrong.

My "medical monitoring" started in December 2009 after Autumn and I drove across the country and I was diagnosed with a DVT in my left calf. At that time I was seeing my PCP doctors twice a month which eventually turned into a monthly visit. In the beginning the DVT diagnosis precipitated by a prolonged cross country drive made sense; however as the weeks and months passed on something wasn't right.

I remember going into the doctor's office, nearing tears, complaining about pains in my leg and being shooed out of the office with another pain medicine prescription. I remember telling the doctors that I don't want pain medicines, I just want my leg to be cured. Every visit ended the same way, "Let's check back in a month and see how you feel then."

I tried wearing compression stockings on my left leg to alleviate the swelling pains from the DVT and shortly after I returned to the doctor's office complaining that I couldn't move my great toe and could barely move the other toes. This turned into the hot topic of discussion at my monthly appointments and every month we'd monitor the movement of my toes. They never really moved but I got used to them and stopped complaining. "We'll see you in a month."

At one point Autumn suggested I get a scan of my legs; I was having pain in my DVT leg and my right knee had started to hurt (attributed to my compensated stride). A scan of my knee seemed to be a reasonable request especially since I think I had injured it over a year ago; however, for the scan of my DVT leg we needed a second opinion. I remember three doctors gathering around me in an examination room looking at my leg and my immobile big toe. I remember hearing them say, "That's strange. I've never seen that before." I got approval for the MRI of my knee but the DVT leg received it's standard treatment: "Let's see you in a month."

Six months later I was diagnosed with a myxoid liposarcoma in my DVT leg.

Last week I decided I wanted to talk to my PCP doctors and tell them about my nights lying awake in bed and how I was feeling. I'm a strong believer of confronting your feelings head on and approaching people directly. My psychotherapist thought I was a masochist. I don't really know what I wanted in meeting with my PCP doctors. Maybe I wanted them to say that they were wrong. Maybe I wanted an apology.

But really I wanted to warn them about zebras for the next patient. There's a saying, "When you hear horse hooves, you look for horses not zebras." With the DVT diagnosis all my complications seemed to have a source. We never questioned an alternative source; it all made sense, but clearly this was a zebra.

The appointment was this afternoon. The meeting was difficult and I started crying the second I saw my PCP doctors. I told them everything I was feeling and by the end of my story they were fighting back tears as well. One of the doctors put his arm on my shoulder and told me how very sorry he was and we ended our meeting with sentimental hugs.

Even though I wanted to see them so that I felt better, I think they needed to see me so that they could feel better. Just as Autumn, my Dad and I have beat ourselves up for not catching this earlier, they too were tormented by the same feelings: scouring their notes and speaking to their colleagues about the situation. They thanked me for coming in and talking to them about my feelings.

I'm glad I went to talk to my doctors today. I think we all needed it.

For everyone else reading, beware of zebras! Listen to your body and if your not getting what you need, get that third, forth, and fifth opinion. Don't wait "another month" till you really have a problem.

The Poop Heard Round the World

Warning: Please stop reading if you don't want to know!

They all say cancer doesn't kill you; it's the side effects of cancer and treatments that lead to your ultimate demise. For me this almost came in the form of a poo.

A side effect of chemotherapy is constipation and no matter how many pills or drinks I take to manage "the mush and the push," for me chemotherapy means a standstill of my bowel movements during my treatments. Thank g-d I'm on a three day chemotherapy schedule instead of a five day schedule!

Once I arrive home after a treatment, mind you I'm drinking Metamucil for hydration and eating Colace like they're tic-tacs, there's always the anticipating fear of confronting what I've made over the past week.

During round 4 I made a mean turd: hard as a rock, edges sharp as daggers and a girth that would make my father proud! As this demon passed through Master Sphincter he tore him right open (medical term: anal fissure).

So there you have it! This is why I haven't been retuning calls or emails. Combined with the inability to heal due to the chemotherapy knocking down my blood counts, I spent the majority of the weekend on the couch or in a sitz bath or applying a new ointment in hopes to relieve this extremely painful experience.

Finally today I got some relief and was able to go into the office!! It seems my blood counts are on their way up again and hopefully I can put this all behind me; no pun intended.

L'Shana Tova!

A Happy New Year's wish to all and hopes that this next year will bring more health and happiness than the previous year!

I've been feeling okay the past couple days: walking, getting out of the house, eating well. Today I was able to return to work which is always nice to talk to my friends and return to my life :) And after work Autumn and I went sailing! The evening started as a green flag day (light winds) but as we launched our boat the yacht club raised the red flag (heavy winds). I think I got a good scare out of Autumn but she was giggling by the end of our journey.

In a little under a week and a half I'll get rescans of my body to compare with the original scans, pre-debacle. These scans will determine what to do after Round 6: do nothing, more chemotherapy, radiation or surgery (in no particular order). Prior to Round 5 on 9/20 I'll meet with an oncology surgeon and radiologist to get the opinions on the matter.

Until then, it's the waiting game!

Saturday's Pile of Bricks

I believe the second day out of chemotherapy is the worst day. I was shocked at how I felt Thursday and Friday, but everything came to a halt on Saturday.

The entire day I felt like I was starring in a zombie movie, sluggishly dragging my body around town drooling on the people I passed. Even so, I managed to walk a great distance throughout the day (2-3 miles) and must have drooled on at least 200 onlookers.

For dinner the family went to Chinatown. There's something in Hot & Sour soup that cuts right through the chemo. It's really great and I swear there must be a correlation; maybe it's those weird stringy mushrooms or maybe it's the extra scoops of spicy paste that I add. Whatever it is, it works!

$15,000 in Research Funding, Earl Threatens Holiday Weekend!

Arriving home early after completing Round 4 and checking my blog to see that we have surpassed $15,000 in research funding, I couldn't be happier. Thank you everyone for your most generous support in fighting this disease. I've been speaking to the recipients of our funds and will have annual reports (email if interested) and will post an update on some of their more specific accomplishments. I can't thank you all enough!

Headlines boast, "Quickest Round Ever Recorded!"

I got admitted at 10:30 am Tuesday and discharged at 2:30 pm Thursday. This is in comparison to the prior round of being admitted at 8:00 pm Wednesday and discharged at 11:30 pm Friday evening. I can't believe it's already over and I don't really know what to do with myself. This'll make for some good recovery time before this coming holiday weekend!

Dad Guyer is supposed to come in town provided that Hurricane Earl behaves!

Above is a water color picture I painted from my room at MGH. It overlooks the Charles River, specifically Longfellow Bridge.

Preparing for Round 4, Ogunquit & Kennebunkport

The waiting game starts the day before a round of chemotherapy; waiting for someone in the hospital to complete their treatment so that I can start mine. No matter how much the doctors and nurses plan, hospital beds open up when people feel better and I need a bed to start my treatment. Tomorrow morning when I wake up I'll call the hospital and see where I stand. Starting on Tuesday means I get one more day to recoup before the weekend but we have to wait.

This past weekend Autumn and I closed our doors to visitors and had a family weekend. We spent all Friday evening researching dog friendly Bed and Breakfast's within a reasonable drive and Saturday morning we packed up the car towards Maine.

Our first stop was a little artist town called Ogunquit just south of Portland, Maine. We spent the early afternoon at Perkin's Cove walking in and out of the little town's shops and watching the crab boats and sailing vessels navigate through the pier.

After lunch we continued our drive north to Kennebunkport, Maine and checked into our Bed and Breakfast called the Hounds Tooth Inn. Not only was this place "dog friendly," but they actually catered to dogs. They had wide open spaces for their dog guests to run wild and jars of dog biscuits and raw hides decorated each room. Benson was in doggie heaven!

The inn keepers at Hounds Tooth also recommended dog friend itineraries during our visit in Kennebunkport and Benson accompanied every meal and every adventure. It was great to get out and about with our little family!

No canes and or wheelchairs, I felt very accomplished. It wasn't too long ago that I remember wishing to go on a vacation where I could walk around without assistance. If the next three rounds make me feel as good as the last three rounds have made me feel, then I should be in pretty good shape come October so bring on Round 4!

Below is a picture of a little souvenir Benson picked up in Kennebunkport!

The Guyer Interbody Fusion Device

Tonight I received the most notable award in my professional career.

Alphatec Spine, my previous employer in San Diego, launched the GLIF project, which was the project I had led, to the next phase of development and recognized me as one of the key inventors of the product. They dedicated the product line to my name and renamed it to the "Guyer Lumbar Interbody Fusion" technique and created a memory book of how I took the project from a napkin sketch to a fully developed product, capable of revolutionizing the way spine surgeons perceive minimally invasive spine surgery.

The executive team flew out to Boston and we had a video conference with all the team members in Carlsbad who had made GLIF a success. Placards like the one shown above were given to all team members and cakes were cut on both ends while we all shared stories. My parents and Dr. Steve Hochschuler flew in from Dallas and Autumn was by my side.

It's amazing to be recognized and honored in such a generous fashion for a project I truly poured my heart, soul and several years into. Having my family and friends both near and far away in Carlsbad to celebrate the milestone made the experience that much more meaningful. It was great to see the whole team get recognized for without their efforts, none of this would have ever been possible. Congratulations and thank you to all involved.

I really had no clue what to expect going into the awards ceremony and am still in disbelief about the recognition to the entire team over video conference, the dedication of the product line and the memory book. Everything was so nice, so very nice. Alphatec went above and beyond fathomable expectations which goes to show as Dr. Hochschuler stated, "they've got their hearts in the right place!"

From my end, developing the project and the job was the easy part. I was just doing what I love to do. What a great honor!

------------

A little background in as close to laymen terms as I can find: The GLIF technique is a method for acheiving a full circumferential fusion of the spine (fusion to the front and back of the spine) while the patient remains in the prone position (on their belly). Previously this type of fusion required the patient to be moved during the surgery, either starting on their back then flipped to their belly or starting on their side and flipped to their belly. Moving the patient requires additional operating room time, more anesthesia and theoretically increases blood loss, etc. The technique also avoids dangerous approaches around the intestines and can allow procedures to be simulatenous implemented to really add a new element to spinal fusion.

Ipswich, Clam Box & Apple Pies

Thank you so much to all those who have donated so far! I can't begin to express how much your support means to me and my family. We feel so privileged to have such a great and widespread support group of friends and family spanning across countries and continents! You all raise our spirits and keep us going and for that we thank you!

Waking up after my week of chemo-spins I felt great! Following round 3 I felt as if I was fighting more the effects of the chemotherapy drugs instead of the physical pain + chemo drugs I battled previously; before I was struggling to walk with a cane whereas this round I mainly battled fatigue with little pain.

By Friday afternoon, after a week of homemade soups and meals compliments of our friends Zac, Richard and Jesse, I was back on my feet.

Autumn and I went sailing to kick off the weekend! It was the first time she came out on the water and we had a blast exploring the Charles, racing through the gusts and dodging the "ducks" and other boats floating around in the cool summer air.

Saturday we ventured to Ipswich, MA. Known for their fresh clams, we found a restaurant called the "Clam Box" and feasted on whopping plate of fried clams, onion rings and coleslaw, worth only 3 heart attacks. Afterwards we followed our noses to Appleton Farms entranced by the smell of fresh apple pie and then ventured back home.

Yesterday our Boston friends, the Kapsons, had a BBQ at their new home in Newton. We brought a fresh apple pie from Ipswich which was amazing. It was one of the first social events for us to attend since my diagnosis. In the beginning it was a little hard to stomach conversations of houses, kids and errands that seem so insignificant after all that we've been going through, but life does go on; this has been an important lesson for us to learn. In the end, it was really great to see our friends and socialize outside our home as a normal couple again. Did I mention the pie?

It was a great weekend to officially conclude Round 3. I feel better than I've ever felt going into this week, which should make for productive and enjoyable times at work and at home with my Autie.

Breathe in Hope, Breathe out Love

A month ago my sister manufactured bracelets that display our new family mantra: "Breathe in Hope, Breathe out Love." My mom introduced these bracelets on a comment back in June and we've had a very positive response. Thank you to everyone who is presently wearing the bracelets and supporting my fight.

I wanted to officially introduce the bracelets on the blog and add a fundraising element; we just ordered more bracelets and are happy to send them out to you (wherever you may live). We ask in return that you donate to Sarcoma research.

This time I'm not running a race or biking across a state, this time the donation WILL go towards research for my survival! Please donate whatever you can.

Here's how to Receive your Bracelet and Donate to Support Sarcoma Research:

1. Write an email to my parents being sure to include your Name, Address and # of Bracelets. They can be reached at guyerdfw@aol.com.
2. Click the "donate link" on the right of the screen and follow the instructions or follow below link: www.together4cures.org/mypage/jeffguyer
3. Don't forget to sign the guest book on the donation site and leave a message.

Thank you so much for your support!

Jeff

p.s. If you had donated before, rest assure that your contributions went to the same site that these newer donations will filter into. The new donation website, sponsored by Dana-Farber, allows us to designate the contributions to the same organizations I had previously linked with the added benefit of a specialized interface. Please do visit the new site, sign the guest book and leave a message.

p.p.s. If you previously received a bracelet but haven't donated, I ask that you donate now.

p.p.p.s. Autumn and I are now accepting hand modeling gigs :)

Two Haiku

Routine gets easy,

The treatments hit me harder;

I see a new day!

Spinning on the couch,

My body now recovers;

Round 3 is over!

Special thanks to SpikeHD for the Star Wars Marathon weekend!
Please leaves comments in haiku (5,7,5)

Walking Canes and Wheelchairs for Sale!

I'm feeling very strong for Round 3, stronger than I ever have: This past weekend I was able to walk to fanuil hall with the nieces and WITHOUT a cane or wheel chair. And on Sunday I sailed and passed my Helmsman test at the Yacht Club which allows me to take a guest out on the water in all wind conditions. That was tiring!

For the Helmsman test they make you take out a boat on your own and run a course in high winds. The water must be white capping! I agree with taking the skills tests; however, sailing alone in high wind conditions is difficult by itself, let alone running a course with my an aching back and numb leg. Nevertheless I passed with flying colors, leaping from one side of the boat to the other side of the boat and pulling in the sheets with all my might!

Today began the waiting process for getting admitted to the hospital but when I called in the morning they said I would probably b admitted tomorrow. So I took my mom sailing with my newly acquired sailing rating. It was a beautiful day and the wind was just strong enough to gingerly push us around the Charles River while we talked and soaked in the sun. Much more relaxing than Sunday's sail :)

Though I couldn't start my treatments, this was a great way to relax before getting admitted tomorrow.

The End of Self Loathing

This past week Autumn and I had a couple of sad days but I think we're done without the self loathing.

On Friday I had a doctor's appointment with my other oncologist. A little more confident after my positive meeting on Wednesday I dared to ask braver questions: "What's the prognosis of my disease? Can I live 60 more years?" The oncologist answered, "On paper the odds of living another 10 to 15 years aren't as great as we'd like but we'll have to see." My heart sank.

Just getting married, with brights plans of a future together, starting a family with children, it's tough not to let those numbers go into your head. Will I see my unborn children graduate high school? Will my 9 month old dog out live me? It's all really sad.

My cousin Sandy, who eariler this year completed rounds of chemotherapy to eliminate her own cancer, guided me along, "No one in the world knows how long he will live. We go ahead with our lives assuming that we'll be very old when we die. It's all so surreal when we finally see that we are mortal beings. The thing is, we've always been mortal. We just didn't think about it until something scary happened. You make your plans for your future, Jeff. You have as much a one as anyone else in this world."

And she's so right! Just this past month my friend's son died of a sudden heart failure and another friend's sister died from a freak car accident. We just don't know what the future holds.

So I'm going to fight for those next 60 years if not more and make all the plans for a future. There's a lot of great research out there and the medical field is changing fast, so we're all going to cross our fingers for a cure.

If there's one thing I know about my future it's that I'm going to enjoy the hell enjoy out of every single day: wake up with a smile, hug my beautiful wife and kiss my children (just Benson & Hemo for now).

p.s. I also got told on Friday that this is likely going to take more than 6 rounds of chemo before it's beat. Tear,

The Aftermath of Two Rounds

Today we met with the oncologist at Dana Farber. After reading the reports from both the CT and MRI scans he was very optimistic about the results. The cancer has not shrunk but it has has not significantly spread either. These were precisely the results that he expected 4-5 weeks into the chemotherapy treatments (less than 2 full rounds). So we're crossing our fingers and trucking forward for another two rounds after which we'll re-check again.

Obviously these are not the results I really wanted to hear. I wanted to hear that the cancer was completely gone and I was cured, but I guess that's not very realistic. This will be a long fight!

One day at time :)

My Visit with Hal on the Charles River

Today I started the series of re-tests to evaluate my treatment progress. In the morning I had a Chest / Pelvic CT scan and tomorrow I get an MRI of my leg.

I've decided that I don't like CT scans because 1.) they need to put in an IV and 2.) they use this contrast that has to be power injected into your veins. Specifically it's the contrast part that I dislike. They put you in this dark room where you're lying a mechanical table with your legs through a stargate (donut like orb) and you have an IV hooked up to this weird contraption displaying two vials: one that is labeled saline and the other that is labeled contrast. Hal, or one of his friends, speaks over the loud speaker, "Breathe in," and the saline vial empties. Hal then says, "Breathe." The machine makes weird noises and then quiets. Again you're asked to breathe, the contrast vial empties, and you're left on the mechanical table feeling like you just wet your pants.

I'm skipping a lot of the details and there were more sounds, ticks, bells and breathing demands but you get the point; no one likes to wet their pants.

After the CT Scan Autumn and I made our way to our Yacht Club. It's really much more of a boat house as I previously explained but it feels so much more Beacon Hill to call it a Yacht Club. I walked in, asked for a boat and started sailing! I still can't take Autumn with me but she had fun sitting on the docks and taking pictures of me hustle less experienced sailors.

I've become desensitized by all these tests, pricks and office visits. Everyone says they get nervous when it's time to check their treatment progress, but I see it more as just another annoying task to do for the evil cancer in my leg. I have visits with my oncologist on Wednesday and Friday so let's keep our fingers crossed.

p.s. I didn't wet my pants on the CT table.

Newport and the MSPCA

All things considered, this has turned out to be great summer :)

This weekend both my dad and mom were in town so decided to go on an adventure to Newport, Rhode Island. We woke up early, packed up the car and set sail in our rental boat (rental car while mine is still in the shop) to the littlest tiniest state in America. We had a short pit stop at the MSPCA to drop off Benson to get neutered and then full steam ahead!

Oh Newport! The land of Cinnamon Bears, Shrinky Dinks and Harbor Cruises, or at least that was our version.

We got there and walked (I got wheeled) around the cute shops downtown, picking up candy and toys along the way and then headed to the harbor for lunch. We ate at this delicious restaurant called The Cooke House Restaurant and people watched the bustling harbor traffic. Apparently, though our intentions were to avoid summer traffic on the cape, this particular weekend in Newport was one of the busiest due to a folk music festival.

After lunch we boarded an open air ferry that took us on a narrated guided tour of the harbor. It was amazing and my dad got yelled at a hundred times for standing up and taking pictures. The air was cool and along the way we could hear the music festival off the shore.

Pretty beat we threw in the towel and decided to skip the Newport Mansion Tours, saving them for another visit and headed back home. We picked up Benson from his castration, and a tired Jeff and violated Benson retired to the couch.

Can you believe his discharge notes said "castration?" Now I feel bad!

Ballads from the Bedroom

A singer-songwriter friend of mine wrote a song titled "Breathe in hope, Breathe out love" inspired by my struggle. Derek is also battling a similar struggle, yeilding him house-bound, and has been recording a series called "Ballads from the Bedroom." I hope you enjoy this song and check out the series.

Hotel de Guyer & Forward Planning

The last week was a crazy week for my visiting schedule. During the week of chemo both my mother and mother-in-law were in town, then my mom's two sisters came in town and today as the aunts left, my sister and two nieces arrived. And then tomorrow my dad comes in town. The picture above is of Autumn and I at the dog park with Jessica and Samantha.

My doctors constantly ask me how I feel to qualitatively gauge the progress of my treatment. What I've noticed is that I have a little more pain after my chemo treatments but afterwards I feel a bit better. It's difficult to say whether feeling better now is an improvement from feeling better before and I have a difficult time differentiating my aches verse pains (I really have no idea what that means).

My doctor's NP told me that a tumor can become inflamed and then shrink down again after a dose of chemotherapy. She continued, "I like to believe that it's the chemo working specifically with that tumor." I thought that was nice because my back has been hurting me lately so I guess it's working :)

Next week I have my re-staging scans on Sunday and Monday to quantitatively evaluate my treatments. The NP explained that they should be able to see the tumor dying from the inside out. We're hoping to see that the cancer has stopped spreading which will be great news or better yet that the tumors are shrinking.

If everything looks good then we'll keep steering the course and if doesn't then we'll cook up a new cocktail for next round. We still have a large arsenal of available treatments and are optimistic on killing this disease.

My Dome!

So there it is! I know I've been promising pictures of my beautiful dome and now you have it. It's quite symmetric and I forgot I have a cool scar on the back of my head from when I was 21 and my brain had reached capacity so my head started growing a new brain. The doctors said it was cyst but I know the truth (and now you do).

I have no hair. It's actually growing back but because I kept demonstrating to people how my hair is falling out it's a little splotchy. I know it doesn't look bad, but it still provides me a constant reminder that I have cancer. I'd suggest anyone planning on getting cancer should shave their head a good year in advance to really grow into their bald head.

I'm generally doing okay. I've weened off all my medicines but my head still spins when I concentrate or stand up. Last night Autumn lent me her hair during dinner.

The Awakening

A couple days after the chemotherapy I "wake up." That's the easiest way to explain the feeling. You just wake up and open yourself to a new day.

Unfortunately it's kind of like Ground Hog Day: nausea, pills, shots, couch, sleep. But it's a new day and between the medicines and shots you can do anything you want (as long as it doesn't involve lifting 10 lbs, bending over or walking > 5 minutes... this is all due to the lesions on my back).

For the past couple of days I've been feeling a little better. Round 2 was definitely better than Round 1. I was discharged from the hospital on Thursday and started "waking up" after my Neulasta shot of on Saturday morning (Can you believe that one shot costs $3500.. we're getting our insurance money's worth this year!). Even the days before the awakening I was able to eat and be a little more than a slug on the couch.

I've had my two moms here which has been a great help and my aunts (mom's sisters) come tonight! We will feast :)

Over 25% Complete

I'm sitting here receiving my fifth treatment out of a total of 18 treatments (six rounds of three treatments). Things are going well with very little incident. We got a late start Tuesday evening so I didn't get much sleep but today they started 4 hours earlier so we should be done at 10:30 pm which should allow for a better night. Hopefully they can push back tomorrow's treatment so I can be discharged in the evening.

The nursing staff has started a new initiative on the floor to have daily social get togethers for all the families the survivors. It has been really enjoyable and a good way to socialize with people in our same situation. Would you believe there are two other people with liposarcomas in their legs on the floor? If sarcomas effect 0.8% of the population then the liposarcomas effect an even smaller fraction, and three of us are being treated here at the same time.

It was good to hear everybody's stories. Both survivors are at the end of their treatments and are doing very well, quoting a "99.9% elimination" of their tumors. I look forward to telling the same stories in a couple of months.

I'm finishing up the Iphosfamide now.. What a bitch! That one goes right to the head! Barf!

Ready for Round 2

The announcer starts, "Fighting out of the blue corner we have challenger Round and Myxoid Type Liposarcoma." The crowd returns a unanimous volley of discontent. "And fighting out the red corner we have the undefeated champion Jeffrey Guyer!" The crowd roars with cheer. "Let's get Ready to Rumble!"

And so Round 2 begins...

I'm not excited for the next coming days, not even a little... surprised? I don't think I'm supposed to be. Last round was really tough; I mean really tough. I could barely leave the couch and whenever I did I either fell back to sleep or wanted puke all over myself. Only now do I really feel as if I've regained my strength from last round and the doctors want to knock me down again. Grumble, grumble, grumble.

However, going into Round 2 I do feel I have a lot things working in my favor:

1. I am healed - Going into Round 1 I was beat up. I had a huge scar from my port along with very uncomfortable dressings on both my upper chest and neck. Additionally I was still healing from the multiple biopsies in my lower back and left calf.
   
2. The doctors know how to deliver the drugs - There should be no more "talking ragtime," and if there is it's because of other drugs I've requested.
   
3. I'm prepared - I know what to expect, and I have a better idea of what I need to do. I'm going to get out of bed, do a lot of walking around and spend much more time in the community areas. Last time laying in bed for three day drained all my energy.
4. I look the part - This weekend Autumn shaved my head. Pictures to follow soon.
   

Wish me luck!

Sailing the Charles

Today was a great day! Autumn and I joined the Community Boating Center down the street from our apartment. Its a great boathouse ~15 minute walk from our place that focuses on encouraging and educating the community about sailing. All membership proceeds go toward instructional classes and allow children to sail for $1.

Although I didn't actually get to sail I was able to get my solo boating license. Figure that one out. They had me rigging boats and answering obscure boating questions about points of sail and right of way. I sure fooled them!

Even though no "sailing" occurred it was nice to be outside and near the water. Many summers and practically my entire collegiate experience was spent on a boat. We signed up for the year which entitles us to approximately 364 more days of sailing. I'm pretty psyched.

The funny part is that even though I have ~10 years of sailing experience they wouldn't let me - 1.) take Autumn out on a boat or 2.) sail with a jib - until I take another test, though my dad and sisters may warn otherwise.

And so it Begins..

So it has started! My hair is officially falling out. I first noticed it last night as I was going to sleep. As I laid down on the pillow my hair fibers felt like daggers digging into my scalp. I had to first smooth the hairs which were to touch the pillow before I lay my head down.

Today our friend Heather Kapson came over to drop off cupcakes and in conversation I could pinch hair on the side of my head and pull it right out. There was no resistance, not even a slight tug back saying, "I like this haircut.. it looks goood!"

I don't know why it's the hair on your head that has to fall out. Why can't it be my back hair, my chest hair or the hairs that catch dingle-berries between my cheeks? Why can't my pubes fall out and spell the words "Porn Star?" But no, the hair on my head falls out.

In Memory of William...

This afternoon I got really sad. I don't know what it was. I was looking at pictures around me of my Dad and I on a family vacation when I was in high school and a goofy "baseball card" picture of me when I was 10. I remember being so carefree with not a worry in the world. I couldn't stop crying.

I stopped working and painted a picture of Portland Headlight to clear my mind. I took Autumn on a trip there last spring for her 30th Birthday. We brought Benson and stayed in a little Bed and Breakfast in the historic district of Portland, Maine. We walked around the town and ate at the most amazing restaurant with the most succulent lobster and scallops.

When Autumn came home from work she told me someone crashed into our car parked right in front of our apartment.

Then while talking on the phone with the insurance company we got a call from Autumn's Mom that Jim (for all intents and purposes my father-in-law) found his son dead, blue on the floor of the bathroom. William was supposed to come to visit us this next weekend. His computer screen was filled with sightseeing activities in Boston.

It's the worst news; a father finding his son blue in a bathroom.

I don't know why I decided to paint a picture of Portland Headlight but when I look at the lighthouse it gives me hope. Just as when sailors lost at sea find a lighthouse after a long evening in the darkness, it reminds me that the end of this tumultuous journey is near and smoother waters are ahead. The lighthouse reminds me to keep on looking forward for that next beacon of hope because it's there, just off in the distance.

Breathe in Hope, Breathe out Love.