I won't be picking up that EOS cap after all. I received a call last week from the Stanford doctor's scheduling desk. They erroneously booked me on a day when Dr. Gotlib will be out of the office. Our schedules don't sync again for another month, so I didn't bother to set another date.
That means that I'll be headed to Newport Beach a little sooner for that uninterrupted R&R (reading and 'riting) time.
Feel like getting away? Give me a call or drop me an email.
Saturday, November 28, 2009
Monday, November 23, 2009
Cross the Line, If You Dare
Over at Open Mouth, Insert Fork, we've discovered that the food always tastes better when you're being a little naughty.
Read about our latest trespassing picnic adventure here.
Read about our latest trespassing picnic adventure here.
The Days of Wine and EOS
Once I get an idea in my head, I have a hard time shaking it off. Take that EOS cap. I won't rest until it's sitting on my head.
I might have a hard time justifying a jaunt to the Eos winery for a taste of the liquid grape, but when it's on the way to Stanford Cancer Center, that's an entirely different matter.
I'm scheduled to see EOS specialist Dr. Jason Gotlib on November 30. The EOS wine specialist is on the calendar for November 29.
Now I can rest again.
I might have a hard time justifying a jaunt to the Eos winery for a taste of the liquid grape, but when it's on the way to Stanford Cancer Center, that's an entirely different matter.
I'm scheduled to see EOS specialist Dr. Jason Gotlib on November 30. The EOS wine specialist is on the calendar for November 29.
Now I can rest again.
Sunday, November 22, 2009
The Light Side of EOS
A friend sent me this photo of an EOS hat. I want this hat. I need this hat.
If my friend doesn't relinquish his, I may have to schedule a stop at Eos, the Paso Robles winery, on my way to a visit with the Stanford EOS specialist.
Don't you love the symmetry of that?
And I just reread an Eos post from friend and goddess gal Finnegan Begin Again. She reveals how Aphrodite, goddess of love and beauty, turned Eos, the goddess of the dawn, into a slut.
Besides the chuckle, the story is a good reminder to "Channel this goddess: when shrouded in darkness, when it feels like the day will never dawn. It always dawns. Follow Eos. She'll lead you to the light."
I can see that light. And there just may be a glass of wine to go along with it.
If my friend doesn't relinquish his, I may have to schedule a stop at Eos, the Paso Robles winery, on my way to a visit with the Stanford EOS specialist.
Don't you love the symmetry of that?
And I just reread an Eos post from friend and goddess gal Finnegan Begin Again. She reveals how Aphrodite, goddess of love and beauty, turned Eos, the goddess of the dawn, into a slut.
Besides the chuckle, the story is a good reminder to "Channel this goddess: when shrouded in darkness, when it feels like the day will never dawn. It always dawns. Follow Eos. She'll lead you to the light."
I can see that light. And there just may be a glass of wine to go along with it.
Friday, November 20, 2009
What Idiot?
"Unexplained weight gain"
I laugh every time I think of those words on a doctor's letter nearly three years ago. It's funny because my weight gain at that time wasn't all that mysterious: I was eating too much and moving too little.
I think we humans are always in search of an explanation. If we can't find one, we make one up.
And when there is no explanation, as in the case of my whacky eosinophils? Doctors explain it away with one simple word: idiopathic. It means "of unknown cause," or, in med-speak, "Hell if I know."
Keep this word in mind the next time someone asks a difficult-to-answer question. "How did this house get so messy?" "Why are our sales down for November?" "How did you get so brilliant?"
Simply shrug your shoulders, put on that enigmatic smile and say, "It's idiopathic." You might just get away with it.
I laugh every time I think of those words on a doctor's letter nearly three years ago. It's funny because my weight gain at that time wasn't all that mysterious: I was eating too much and moving too little.
I think we humans are always in search of an explanation. If we can't find one, we make one up.
And when there is no explanation, as in the case of my whacky eosinophils? Doctors explain it away with one simple word: idiopathic. It means "of unknown cause," or, in med-speak, "Hell if I know."
Keep this word in mind the next time someone asks a difficult-to-answer question. "How did this house get so messy?" "Why are our sales down for November?" "How did you get so brilliant?"
Simply shrug your shoulders, put on that enigmatic smile and say, "It's idiopathic." You might just get away with it.
Thursday, November 19, 2009
Here We Go Again (Round Three Against the EOS)
They're ba-ack.
The eosinophils (EOS), the component of the white blood that fights allergies or parasites, are climbing once again. It makes me think of a little story that the Pasadena Library children's librarian often told when Cynthia was a little grasshopper. "They went up the hill and down the hill and up the hill and down the hill and up the hill and down the hill."
They (the EOS) went up and then they went down with the prednisone. Then they went up when I tapered off the prednisone. Then they went down with prednisone. Then I tapered off the prednisone again, and we're climbing that hill for the third time.
What can I say? I'm tired of climbing the hills. I hate this "in between" stage when I must carefully pace myself if I don't want to collapse. (I'm back to making dates and breaking dates.) I don't like feeling out of breath after climbing two flights of stairs. I'm deathly afraid of becoming as sick as I was during the summer and fall of 2008. I hate the manic, sleepless side effects of the treatment - high dose prednisone. I want off the treadmill.
Now, here comes the tricky part. When I saw the EOS specialist at Stanford last spring, he advised me to see an allergist after I tapered off the prednisone so that we could see if allergies were the driver of the EOS. I saw a very competent allergist last week and learned that I'm allergic to pollen (no surprise), dust mites (no surprise) and pets (BIG surprise). We have two cats and two dogs.
So . . . we know I have allergies. And we know that my EOS are rising. We just don't know if there's a connection between the two. The allergist recommended that I isolate myself from the pets for two weeks and then immediately measure my blood counts. I've decided to take a friend's offer to use her Newport Beach apartment for two weeks. I pack my bags right after Thanksgiving.
Just doing my little bit for science.
The eosinophils (EOS), the component of the white blood that fights allergies or parasites, are climbing once again. It makes me think of a little story that the Pasadena Library children's librarian often told when Cynthia was a little grasshopper. "They went up the hill and down the hill and up the hill and down the hill and up the hill and down the hill."
They (the EOS) went up and then they went down with the prednisone. Then they went up when I tapered off the prednisone. Then they went down with prednisone. Then I tapered off the prednisone again, and we're climbing that hill for the third time.
What can I say? I'm tired of climbing the hills. I hate this "in between" stage when I must carefully pace myself if I don't want to collapse. (I'm back to making dates and breaking dates.) I don't like feeling out of breath after climbing two flights of stairs. I'm deathly afraid of becoming as sick as I was during the summer and fall of 2008. I hate the manic, sleepless side effects of the treatment - high dose prednisone. I want off the treadmill.
Now, here comes the tricky part. When I saw the EOS specialist at Stanford last spring, he advised me to see an allergist after I tapered off the prednisone so that we could see if allergies were the driver of the EOS. I saw a very competent allergist last week and learned that I'm allergic to pollen (no surprise), dust mites (no surprise) and pets (BIG surprise). We have two cats and two dogs.
So . . . we know I have allergies. And we know that my EOS are rising. We just don't know if there's a connection between the two. The allergist recommended that I isolate myself from the pets for two weeks and then immediately measure my blood counts. I've decided to take a friend's offer to use her Newport Beach apartment for two weeks. I pack my bags right after Thanksgiving.
Just doing my little bit for science.
Monday, November 16, 2009
Maybe I Need To Get Out More
Today I spent the better part of my day at the City of Hope.
Since I'm really too busy to be a patient, I popped into the Patient Resource Center between appointments to check and send emails and finish up a couple of small projects.
After letting out an expletive at the keyboard, I realized that I was emoting while typing. I turned to the lady to my left and apologized, "Gee, I'm sorry for all the sound effects."
"That's OK," she laughed. "You're funny. It's like sitting next to the Sandra Bernhard of computers. You have gone through every possible emotion in 20 minutes."
And, to make her point, she said, "Here let me imitate you." She went through my soliloquy, which ended in "OH, SH**!"
"You should have seen me when I found out that they had removed the vending machines next to the pharmacy," I told her.
"I can only imagine."
Since I'm really too busy to be a patient, I popped into the Patient Resource Center between appointments to check and send emails and finish up a couple of small projects.
After letting out an expletive at the keyboard, I realized that I was emoting while typing. I turned to the lady to my left and apologized, "Gee, I'm sorry for all the sound effects."
"That's OK," she laughed. "You're funny. It's like sitting next to the Sandra Bernhard of computers. You have gone through every possible emotion in 20 minutes."
And, to make her point, she said, "Here let me imitate you." She went through my soliloquy, which ended in "OH, SH**!"
"You should have seen me when I found out that they had removed the vending machines next to the pharmacy," I told her.
"I can only imagine."
Friday, November 6, 2009
Ups, Downs and Hugs All Around
Yesterday I ran into my friend Krissy Kobata while I was at the City of Hope. This was a surprise because she ordinarily sees a doctor at the UCLA Medical Center.
She told me that our friend Jerome has finally found a donor match after a search of more than two years. I had somehow missed this Facebook announcement, wrote him back right away and found out that he's scheduled to go in for his stem cell transplant on November 15. I might be a little reserved when I find out I've won a raffle prize, but I go a little crazy when I get this kind of news.
But minutes later, while sifting through the blogs I follow, I spotted this headline: Brad is Gone. I immediately burst into tears to learn that this larger than life Texan died yesterday. We both got our diagnosis of Mantle Cell Lymphoma, Blastic Variety, at around the same time and followed one another closely through our blogs and email. The blastic variety has a reputation for being aggressive and treatment resistant. This proved to be the case for Brad.
I never met him in person, but I'm going to miss him dearly. I only wish that just once I could have given him the kind of embrace that Krissy gave me yesterday. I love to receive one of Krissy's hugs and I love to watch her give one because you see her face glow and you feel pure love, appreciation and support.
Just one more reminder of how good it feels to be supported and the importance to wrap our arms around others (both literally and figuratively) every chance we get.
She told me that our friend Jerome has finally found a donor match after a search of more than two years. I had somehow missed this Facebook announcement, wrote him back right away and found out that he's scheduled to go in for his stem cell transplant on November 15. I might be a little reserved when I find out I've won a raffle prize, but I go a little crazy when I get this kind of news.
But minutes later, while sifting through the blogs I follow, I spotted this headline: Brad is Gone. I immediately burst into tears to learn that this larger than life Texan died yesterday. We both got our diagnosis of Mantle Cell Lymphoma, Blastic Variety, at around the same time and followed one another closely through our blogs and email. The blastic variety has a reputation for being aggressive and treatment resistant. This proved to be the case for Brad.
I never met him in person, but I'm going to miss him dearly. I only wish that just once I could have given him the kind of embrace that Krissy gave me yesterday. I love to receive one of Krissy's hugs and I love to watch her give one because you see her face glow and you feel pure love, appreciation and support.
Just one more reminder of how good it feels to be supported and the importance to wrap our arms around others (both literally and figuratively) every chance we get.
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