We just got back from Dr. Neel's office and we are back in the game. Mike starts a new chemo on Wednesday. There are two drugs -- alimta and avastin. One of them only takes 10 minutes. The other about two hours. So no more super long days. And it's only once every three weeks.
The side effects of both are minimal -- nothing compared the previous chemo. Mike's holding out hope his hair will grow back! One drug comes with a rare but serious risk of stroke. It happens in about one percent of patients. So I guess we're proceeding with some caution. Mike is ready to get rolling. It' s been nice not to have chemo for a month but feels better when he's actually doing something to fight this stupid thing. Please keep your fingers crossed and your prayers coming that this will be the one that does the trick.
P.S. Savannah was fun but I missed Julia so bad I couldn't stand it! I just love that little ball of curls and giggles too much to be away from her so long. But it was nice being with Mike in a city that we love so much. We're still pretty cute, I think...
Friday, August 29, 2008
Friday, August 22, 2008
New hope
We're back from Moffitt, with a new chemo and a new mission. The doctors there were very matter of fact: Ok, the first chemo didn't work, so try this. They recommended two new drugs and gave us an out-of-the-box idea too.
The new chemo, which Mike could start as early as next week, would be every three weeks for probably three cycles. One of the drugs only takes 10 minutes, so maybe no more marathon days at the infusion center. Dr. Simon also said it's much more tolerable than the previous meds. He said it would be a walk in the park compared to the old stuff.
This cancer is such a mystery to doctors because there's no clear cut solution. It drives them crazy, Dr. Simon told us. You just have to keep trying different things. So, that's what we're going to do. Hope floats again. We celebrated by, yes, stopping at Hooter's on the way home for wings and a beer. Thanks Frankels!
Another thing they mentioned was radiation. Since the cancer is contained to the neck and chest, they could just go in and zap it all. Of course, in 95 percent of the cases, it comes back somewhere else. Sometimes it may take years to come back though. Just something to consider. He says to try more chemo first.
But first, we have our trip to Savannah this weekend... We're going to drink daiquiris on Bay Street, try not to trip down the steps to River Street, wander around the city squares, have dinner at the restaurant where we got engaged, maybe spend a day at the beach, whatever... we're just going to be.
P.S. Happy Birthday Nana!
The new chemo, which Mike could start as early as next week, would be every three weeks for probably three cycles. One of the drugs only takes 10 minutes, so maybe no more marathon days at the infusion center. Dr. Simon also said it's much more tolerable than the previous meds. He said it would be a walk in the park compared to the old stuff.
This cancer is such a mystery to doctors because there's no clear cut solution. It drives them crazy, Dr. Simon told us. You just have to keep trying different things. So, that's what we're going to do. Hope floats again. We celebrated by, yes, stopping at Hooter's on the way home for wings and a beer. Thanks Frankels!
Another thing they mentioned was radiation. Since the cancer is contained to the neck and chest, they could just go in and zap it all. Of course, in 95 percent of the cases, it comes back somewhere else. Sometimes it may take years to come back though. Just something to consider. He says to try more chemo first.
But first, we have our trip to Savannah this weekend... We're going to drink daiquiris on Bay Street, try not to trip down the steps to River Street, wander around the city squares, have dinner at the restaurant where we got engaged, maybe spend a day at the beach, whatever... we're just going to be.
P.S. Happy Birthday Nana!
Wednesday, August 20, 2008
Weathering the storm
A friend just sent me this lovely quote:
"Life isn't about waiting for the storm to pass ... it's about learning to dance in the rain."
I'm going to take it to heart in the future, but right now we are literally ... waiting for the storm to pass.
Tropical Storm Fay has been dumping nonstop rain on us since late Monday night. High winds have strewn debris all over our yard. The streets are flooded and we've had to pump out the pool three times now. And Julia's starting to get cabin fever because she hasn't been out in two days. I'm trying to make life more pleasant with lots of stories (she brings me books now and says "read a storwy, read a storwy..") and Elmo videos. But I would like for the rain to stop now, please. Thank you. I've had all the Cat in the Hat I can take.
Fay isn't the only storm we've been weathering this week. Our company, Gannett, announced there would be 1,000 layoffs company wide. We found out Friday there would be 21 at our newspaper -- 10 through jobs that hadn't been filled and 11 layoffs. We were on edge all weekend. Turns out, both of us get to stay employed, for now. The newspaper business is not a good one to be in anymore. And that makes me sad.
So tomorrow, weather permitting, we're driving to Tampa for our appointment at the Moffitt Cancer Center. Hopefully, I'll have something good to post.
"Life isn't about waiting for the storm to pass ... it's about learning to dance in the rain."
I'm going to take it to heart in the future, but right now we are literally ... waiting for the storm to pass.
Tropical Storm Fay has been dumping nonstop rain on us since late Monday night. High winds have strewn debris all over our yard. The streets are flooded and we've had to pump out the pool three times now. And Julia's starting to get cabin fever because she hasn't been out in two days. I'm trying to make life more pleasant with lots of stories (she brings me books now and says "read a storwy, read a storwy..") and Elmo videos. But I would like for the rain to stop now, please. Thank you. I've had all the Cat in the Hat I can take.
Fay isn't the only storm we've been weathering this week. Our company, Gannett, announced there would be 1,000 layoffs company wide. We found out Friday there would be 21 at our newspaper -- 10 through jobs that hadn't been filled and 11 layoffs. We were on edge all weekend. Turns out, both of us get to stay employed, for now. The newspaper business is not a good one to be in anymore. And that makes me sad.
So tomorrow, weather permitting, we're driving to Tampa for our appointment at the Moffitt Cancer Center. Hopefully, I'll have something good to post.
Tuesday, August 12, 2008
Back to the drawing board
Today was supposed to be the day we got started on a new chemo treatment.
Didn't happen.
Instead, we're back where we started. No one knows what this cancer is or how to treat it.
Dr. Neel presented Mike's case to the "tumor board" (nice name, huh?) which is essentially the other oncologists in the practice, as well as the pathologists and some others. They reviewed the new test that indicated small-cell lung cancer. The pathologists, who study the cells under a microscope, say no way is this lung cancer. They think it started in the head and neck. But Mike's had cameras up his nose and down his throat and all over his head. They can't find a thing. One thing they did all agree on was that the chemo drugs Mike had been getting should have been working. They are for head, neck AND lung cancer. Didn't really want to hear that...
It's so frustrating. Neel says there are a number of different drugs we can try, but none stand out to him as the "best" option. So we're going back to the Moffitt Cancer Center in Tampa on the 21st to meet with Dr. Simon again. Neel wants to sort of pick his brain, let him review the new tests, etc. and see if he might have some ideas. Moffitt is a research hospital and Simon specializes in lung and unknown primary cancers, so we figure we may as well hear what he has to say.
So, Mike's been off chemo now for two weeks. By the time we get to Moffitt and get back with Neel, it will likely be an entire month of no chemo. We were concerned about this since the cancer has grown. But Neel says it's not at a life-threatening stage and Mike's body needs the break. So I guess we'll enjoy it while we can, but Mike is ready to get back to fighting this stupid thing. I'm praying so hard every moment of the day that someone can figure out what we need to do.
Didn't happen.
Instead, we're back where we started. No one knows what this cancer is or how to treat it.
Dr. Neel presented Mike's case to the "tumor board" (nice name, huh?) which is essentially the other oncologists in the practice, as well as the pathologists and some others. They reviewed the new test that indicated small-cell lung cancer. The pathologists, who study the cells under a microscope, say no way is this lung cancer. They think it started in the head and neck. But Mike's had cameras up his nose and down his throat and all over his head. They can't find a thing. One thing they did all agree on was that the chemo drugs Mike had been getting should have been working. They are for head, neck AND lung cancer. Didn't really want to hear that...
It's so frustrating. Neel says there are a number of different drugs we can try, but none stand out to him as the "best" option. So we're going back to the Moffitt Cancer Center in Tampa on the 21st to meet with Dr. Simon again. Neel wants to sort of pick his brain, let him review the new tests, etc. and see if he might have some ideas. Moffitt is a research hospital and Simon specializes in lung and unknown primary cancers, so we figure we may as well hear what he has to say.
So, Mike's been off chemo now for two weeks. By the time we get to Moffitt and get back with Neel, it will likely be an entire month of no chemo. We were concerned about this since the cancer has grown. But Neel says it's not at a life-threatening stage and Mike's body needs the break. So I guess we'll enjoy it while we can, but Mike is ready to get back to fighting this stupid thing. I'm praying so hard every moment of the day that someone can figure out what we need to do.
Monday, August 11, 2008
A girl and her Elmo
Mike and I said we weren't going to be "those" parents -- the ones who spend obscene amounts of money at a theme park for a child too young to remember or appreciate the experience.
But when I read in the paper that Sesame Street was putting on a production this summer at SeaWorld, all rules went out the window. Julia loooooves her Elmo.
The lines, the crowds, the scorching August Florida heat, the $7.29 kid meal were sooo worth it just for this moment:
Another good moment -- the look on her face when Elmo, Abby, "Cookies" Monster, Grover and Rosita came on stage:
But when I read in the paper that Sesame Street was putting on a production this summer at SeaWorld, all rules went out the window. Julia loooooves her Elmo.
The lines, the crowds, the scorching August Florida heat, the $7.29 kid meal were sooo worth it just for this moment:
Another good moment -- the look on her face when Elmo, Abby, "Cookies" Monster, Grover and Rosita came on stage:
More pictures from our day. The first one is me trying to get Julia to tell Elmo bye-bye. She wanted to stay and play with him:
By the way, we still have every intention of telling Julia that Disney World is really, really far away until she's at least 5, maybe 6.
Wednesday, August 6, 2008
Cancer etiquette
Is there such a thing? Today at the dentist, when the receptionist, who knows Mike through the world of high school sports, asked about him, I just told her he was fine. No need to announce he has cancer, right? And when the dentist told me I needed to get on Mike about coming back to finish up some much-needed dental work, I wanted to scream, look buddy, he has more pressing problems right now than his teeth. But I don't guess you can just say things like that.
The other day though, I did do something Emily Post would disapprove of. One of the assistant metro editors came over to Mike and me and commented on Mike's weight loss. He's down about 10 pounds. He wanted to know what we're doing since I had lost about 30 pounds last fall. I think Mike and I made just made stupid faces, but he kept on. He asked if we were doing South Beach. Then I just blurted: Mike has CANCER. You could see the look of horror on his face and I instantly felt like a total jerk. I don't want to make someone feel bad. It just came out. I sent him a note apologizing. He told me he was praying for us.
I don't know if there are rules for such things. I just hope I don't flub up too bad again.
The other day though, I did do something Emily Post would disapprove of. One of the assistant metro editors came over to Mike and me and commented on Mike's weight loss. He's down about 10 pounds. He wanted to know what we're doing since I had lost about 30 pounds last fall. I think Mike and I made just made stupid faces, but he kept on. He asked if we were doing South Beach. Then I just blurted: Mike has CANCER. You could see the look of horror on his face and I instantly felt like a total jerk. I don't want to make someone feel bad. It just came out. I sent him a note apologizing. He told me he was praying for us.
I don't know if there are rules for such things. I just hope I don't flub up too bad again.
Friday, August 1, 2008
Happy pics
I didn't like coming to the Web site and seeing the unhappy post at the top, so I thought I'd share some happier moments -- Julia's playdate with Landon last week.
And in keeping with the happy theme, I won't share the photos from the end of the playdate when both kiddies had meltdowns and were laying on the floor screaming their heads off.
In their defense it was close to nap time and I know when I'm tired, I feel like throwing myself on the floor and crying too.
(We call this Julia's yoga pose. She does it all the time. I think she likes to look at things "upside down." She didn't even seem to care that when she did it in the pool, she might get water up her nose...)
Subscribe to:
Posts (Atom)