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!
Friday, November 26, 2010
Monday, November 15, 2010
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 :)
Friday, November 12, 2010
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.
Thursday, October 28, 2010
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.
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.
Monday, October 25, 2010
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.
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.
Thursday, October 21, 2010
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...
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...
Monday, October 18, 2010
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.
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.
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