I hate tooting my own horn but I can't resist this. This blog has been mentioned in an article in Newsweek called "Real Funny People: Young Patients Laugh At Cancer". It's only a "web article" and won't appear in the print magazine, but cool none-the-less.
It's great to see young adult cancer patients getting some exposure in the media. We're often overlooked in favor of the very young or very old.
Thursday, July 30, 2009
Northwest Cancer Convention 2009
We recently returned from a wonderful trip to Seattle to visit our "cancer" friend Yanni and her "special friend" John**. She was diagnosed with CML in the fall of 2008, then with Lymphoma in the spring of 2009, and most recently with TIA (basically mini strokes). If anyone is qualified to say "I'm fucked" it's her.
We've gotten to know each other quite well over email, instant messaging and a brief meet up in San Francisco last winter. She's an extraordinary individual with the spirit of a fighter. She's always a delight to talk with, even when things are going poorly for her (which is pretty much the entire time I've known her).
We were treated by our gracious hosts to 3 fabulous days of pacific northwest culture and scenery. The highlight of our trip was something very simple but very special. On Friday we had a group lunch with 2 other individuals who also had CML. At one table, in the suburbs of Seattle, sat 4 cancer survivors. Each shared the common thread of cancer and yet each had a unique story.
Clockwise from front: Marissa, Yanni, Tyler, Hans,
Han's son, Han's mom, Matt, Wendy.
Tyler recently underwent a bone marrow transplant and is doing excellent. His friend Hans plays on the same soccer team and was diagnosed mere months after Tyler. Hans has failed Gleevec and is now on Sprycel. Yanni has been diagnosed with more illnesses than should be present in the population of a small town. And of course, you know Wendy and I. (For the record Marissa raised money with Team In Training and ran the Seattle Half Marathon. Thanks Marissa!)
We enjoyed a long lunch sharing stories about bone marrow biopsies, radiation, chemo-therapy, nurses, needles and doctors. We also talked about death and those we've lost to cancer. Much of the conversation was macabre, frank, open and blunt. It's so refreshing to be able to let down your guard, tell it like it is and not worry about how people will react or whether you'll make them uncomfortable. We joked that the waitress probably didn't even know what was going on. Even though the topics of discussion were heavy and necessarily dark you'd never have known by the laughter and smiles all around the table. After all, we're still here.
On Saturday we were treated to a whirl-wind tour of Washington. We did a little hiking around Mt. Rainier, drove out through Yakima and visited Leavenworth. Washington is indeed a beautiful place.
Matt and Wendy at Shadow Lake
in Mt. Ranier National Park.
We'd like to thank Yanni, John and Ryan for showing us such a wonderful time and being such gracious hosts. My toast to Yanni before we left: "I'm sorry I met you, but I'm glad I know you." In other words, if we didn't have cancer we never would have met, but I'm glad to have found such a good friend.
** Yanni could supply enough material for a reality show and soap opera. This is an inside joke that no one but Yanni, her family and John will get (or the paramedics in Snoqualmie, Washington) but I can't resist putting something up about it. Maybe in time she'll let me share the story of the paramedic visit to her house on Sunday the weekend we were there. You won't be disappointed.
We've gotten to know each other quite well over email, instant messaging and a brief meet up in San Francisco last winter. She's an extraordinary individual with the spirit of a fighter. She's always a delight to talk with, even when things are going poorly for her (which is pretty much the entire time I've known her).
We were treated by our gracious hosts to 3 fabulous days of pacific northwest culture and scenery. The highlight of our trip was something very simple but very special. On Friday we had a group lunch with 2 other individuals who also had CML. At one table, in the suburbs of Seattle, sat 4 cancer survivors. Each shared the common thread of cancer and yet each had a unique story.
Clockwise from front: Marissa, Yanni, Tyler, Hans,
Han's son, Han's mom, Matt, Wendy.
Tyler recently underwent a bone marrow transplant and is doing excellent. His friend Hans plays on the same soccer team and was diagnosed mere months after Tyler. Hans has failed Gleevec and is now on Sprycel. Yanni has been diagnosed with more illnesses than should be present in the population of a small town. And of course, you know Wendy and I. (For the record Marissa raised money with Team In Training and ran the Seattle Half Marathon. Thanks Marissa!)
We enjoyed a long lunch sharing stories about bone marrow biopsies, radiation, chemo-therapy, nurses, needles and doctors. We also talked about death and those we've lost to cancer. Much of the conversation was macabre, frank, open and blunt. It's so refreshing to be able to let down your guard, tell it like it is and not worry about how people will react or whether you'll make them uncomfortable. We joked that the waitress probably didn't even know what was going on. Even though the topics of discussion were heavy and necessarily dark you'd never have known by the laughter and smiles all around the table. After all, we're still here.
On Saturday we were treated to a whirl-wind tour of Washington. We did a little hiking around Mt. Rainier, drove out through Yakima and visited Leavenworth. Washington is indeed a beautiful place.
Matt and Wendy at Shadow Lake
in Mt. Ranier National Park.
We'd like to thank Yanni, John and Ryan for showing us such a wonderful time and being such gracious hosts. My toast to Yanni before we left: "I'm sorry I met you, but I'm glad I know you." In other words, if we didn't have cancer we never would have met, but I'm glad to have found such a good friend.
** Yanni could supply enough material for a reality show and soap opera. This is an inside joke that no one but Yanni, her family and John will get (or the paramedics in Snoqualmie, Washington) but I can't resist putting something up about it. Maybe in time she'll let me share the story of the paramedic visit to her house on Sunday the weekend we were there. You won't be disappointed.
Monday, July 13, 2009
The Difference A Year Makes
Wendy and I made the trip up to Lake Alamanor for the Fourth of July holiday weekend again this year to go camping with my family. Last year I had the unfortunate duty of informing my family that I had been diagnosed with cancer. After breaking the news last year I said that my goal was to get together again the next year for "Remission Party".
While I'll never get to have a remission party, we had the next best thing. I'm doing fabulously on Gleevec and my PCR results have come back twice in a row as "barely detectable". I'm not sure if this qualifies as PCRU (no detectable leukemia cells) but I'll take it. In addition to that I'm really enjoying my new job even though the demands are much higher than my previous position. I've finally beaten the remaining causes of my fatigue into submission and have almost as much energy as I did before I was diagnosed. I have a ways to go before I'm back in shape again, but I've got the energy to actually attempt getting into shape again.
Friday night we all gathered in the same campsite we had last year and sat around the exact same table where 365 days earlier I'd told them all I had cancer. This year I started out the conversation exactly the same:
"Anyone have any announcements they'd like to make?"
There were a couple of uncomfortable laughs and a couple jesting remarks about that "not being cool." But I was serious. I had news to share this year almost as momentus as the news last year. And given the news last year, perhaps more momentus.
Wendy is due December 31.
After 2 years of trying, cancer, 3 miscarriages and 4 months of being told we would not be able to have children in the "normal way" we're going to be parents. Wendy is 14 weeks pregnant as of July 4th and so far (knock on wood) the baby is growing, healthy, and progressing perfectly. We've had 5 ultrasounds, 3 dopplers and a CVS test in those 14 weeks. We're afraid to get too excited for fear of having this ripped out from under us again, but with every passing week and every visit where the heart is still beating we allow ourselves to get a little more excited.
Recently we've gotten a little giddy walking through the baby section at Target and shopping for maternity clothes to fit Wendy's burgeoning belly (she's actually starting to show a little bit!). We cherish every "morning sick" moment, every emotional outburst and every sleepy afternoon. We feel so fortunate to finally have a pregnancy that might make it.
So what difference does a year make? In our case, it's made all the difference. We can't wait till the next Fourth of July, where hopefully, we'll be celebrating with our first child.
While I'll never get to have a remission party, we had the next best thing. I'm doing fabulously on Gleevec and my PCR results have come back twice in a row as "barely detectable". I'm not sure if this qualifies as PCRU (no detectable leukemia cells) but I'll take it. In addition to that I'm really enjoying my new job even though the demands are much higher than my previous position. I've finally beaten the remaining causes of my fatigue into submission and have almost as much energy as I did before I was diagnosed. I have a ways to go before I'm back in shape again, but I've got the energy to actually attempt getting into shape again.
Friday night we all gathered in the same campsite we had last year and sat around the exact same table where 365 days earlier I'd told them all I had cancer. This year I started out the conversation exactly the same:
"Anyone have any announcements they'd like to make?"
There were a couple of uncomfortable laughs and a couple jesting remarks about that "not being cool." But I was serious. I had news to share this year almost as momentus as the news last year. And given the news last year, perhaps more momentus.
Wendy is due December 31.
After 2 years of trying, cancer, 3 miscarriages and 4 months of being told we would not be able to have children in the "normal way" we're going to be parents. Wendy is 14 weeks pregnant as of July 4th and so far (knock on wood) the baby is growing, healthy, and progressing perfectly. We've had 5 ultrasounds, 3 dopplers and a CVS test in those 14 weeks. We're afraid to get too excited for fear of having this ripped out from under us again, but with every passing week and every visit where the heart is still beating we allow ourselves to get a little more excited.
Recently we've gotten a little giddy walking through the baby section at Target and shopping for maternity clothes to fit Wendy's burgeoning belly (she's actually starting to show a little bit!). We cherish every "morning sick" moment, every emotional outburst and every sleepy afternoon. We feel so fortunate to finally have a pregnancy that might make it.
So what difference does a year make? In our case, it's made all the difference. We can't wait till the next Fourth of July, where hopefully, we'll be celebrating with our first child.
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