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.

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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.