http://www.lungcanceralliance.org/involved/sign_the_petition.php
Thanks all.
Thursday, July 31, 2008
Ta Da!
Well, all I can say is I am happy that I will be off these steroids soon, so I am not all zitty like I am now...but it's crazy how quickly I have adapted to running around my house all baldy. It's really comfy!
Lucie is treating me like a parlor trick -- "Take off your fakey wig and show us your baldy head, mommy!" TO EVERYONE.
I am pretty happy with the wig as well -- taking it into Mickel for a little trimming..it's just the tiniest bit poofy and I would like at least a couple of funky layers...it's too stepford at the moment. But all in all, not too bad!
And boy, am I glad just to have done it and gotten it over with. Moving forward -- closer to chemo, closer to some nice cancer eradication!!
Wednesday, July 30, 2008
Ancient Persian Magic
Our friend Laya Ganion sent me a box of Persian Magic. I think, hands down, that is one of the coolest packages anyone can get. It involves a charm called a "chesm" that absorbs evil and negative energy from everyone who passes by it in the house (and it's really pretty), and also some great herbs called "Esfand" that I burn a pinch on the stove every so often.
She also sent me some great literature about it, and I tell you what Laya, I am a believer!
Onto the update -- finish brain radiation on Friday, hip radiation on Wednesday....and am starting to downsize my steroids (which will be great because even though they are giving me great energy and a positive outlook have also given me massive zits, and the worst calf leg pain of my life)
And then Matt and I have a meeting with Dr West to discuss the chemo plan on Monday...
I know it's weird to be ancy for Chemo...but I want to get some of this cancer GONE, please! Besides, we just bought the cutest orange leather recliner for me to rest in...and I'm ready to get into Firefly and some other great series (finally have time!).
Going wig shopping with Denise today. My hair is falling out in droves and it's super disgusting. Lucie is ready for me to be bald -- she thinks it's kind of funny....she wants me to get a big long Rapunzel wig...
Had a lovely lunch with my long time friend Peggy Giosso last week, which was fantastic -- she was up from California for the week-- AND, she hooked us up with her sister Anna, who is going to be my Lucie-nanny-pickup in the fall from KIndergarten! Hooray! That was worrisome for a bit, but now it is all handled and set. Big help, very well timed. Thanks Peg!
Alright, that's it for now. Love you all.
She also sent me some great literature about it, and I tell you what Laya, I am a believer!
Onto the update -- finish brain radiation on Friday, hip radiation on Wednesday....and am starting to downsize my steroids (which will be great because even though they are giving me great energy and a positive outlook have also given me massive zits, and the worst calf leg pain of my life)
And then Matt and I have a meeting with Dr West to discuss the chemo plan on Monday...
I know it's weird to be ancy for Chemo...but I want to get some of this cancer GONE, please! Besides, we just bought the cutest orange leather recliner for me to rest in...and I'm ready to get into Firefly and some other great series (finally have time!).
Going wig shopping with Denise today. My hair is falling out in droves and it's super disgusting. Lucie is ready for me to be bald -- she thinks it's kind of funny....she wants me to get a big long Rapunzel wig...
Had a lovely lunch with my long time friend Peggy Giosso last week, which was fantastic -- she was up from California for the week-- AND, she hooked us up with her sister Anna, who is going to be my Lucie-nanny-pickup in the fall from KIndergarten! Hooray! That was worrisome for a bit, but now it is all handled and set. Big help, very well timed. Thanks Peg!
Alright, that's it for now. Love you all.
Friday, July 25, 2008
Catching up
Jeezus having cancer is busy. Lots of appointments, lots of trips to the store to get all the crazy whole food concoctions that go into my daily smoothies..
Well, that plus my computer has been under visqueen because of the interior painting that's going on at our house, making it awkward to say the least.
But here's the catch up.
Radiation is finally making me a little tired. Still have hair, but really, I'm not so impressed with it anymore. Even though I am definitively not a hat and scarf person, my friend Julia rocked some great stuff out for me -- so great, in fact, that Lucie keeps stealing various hats and squirreling them away in her room.
I'm two thirds of the way done with radiation. End on the 6th. On the 5th, I am meeting with Dr. West to make "the chemo plan." Thank goodness. Let's get this feel like crap party started so we can have some results (besides just no brain tumors and hip tumors).
The steroids are still going strong and do a nice job of keeping me up...so the xanax has been pretty much shelved for the past couple of weeks...although there has definitely been need of ambien. The doctors are all assuring me it's for the best, and once we get through this to a certain point, we can deal with any addiction problems that might have occurred.
Straight from Swedish to Betty Ford...how glamorous my 40's are...
Next post is all about Persian Magic -- and how I got a box of it in the mail -- super cool!!
Well, that plus my computer has been under visqueen because of the interior painting that's going on at our house, making it awkward to say the least.
But here's the catch up.
Radiation is finally making me a little tired. Still have hair, but really, I'm not so impressed with it anymore. Even though I am definitively not a hat and scarf person, my friend Julia rocked some great stuff out for me -- so great, in fact, that Lucie keeps stealing various hats and squirreling them away in her room.
I'm two thirds of the way done with radiation. End on the 6th. On the 5th, I am meeting with Dr. West to make "the chemo plan." Thank goodness. Let's get this feel like crap party started so we can have some results (besides just no brain tumors and hip tumors).
The steroids are still going strong and do a nice job of keeping me up...so the xanax has been pretty much shelved for the past couple of weeks...although there has definitely been need of ambien. The doctors are all assuring me it's for the best, and once we get through this to a certain point, we can deal with any addiction problems that might have occurred.
Straight from Swedish to Betty Ford...how glamorous my 40's are...
Next post is all about Persian Magic -- and how I got a box of it in the mail -- super cool!!
Tuesday, July 22, 2008
Big Girl Panties....Wise Words
One of the best things that I have heard in the past three weeks is that, yes, this is going to be tough. And yes, this is really scary stuff. And that yes, it's okay to be monumentally freaked out, sometimes.
BUT. If I'm going to really beat this, "it's time to put on the big girl panties and not mess around." Courtesy of Aunt Vicki, who has always been a great mentor to me in so many ways. And as always, when she said that, made me crack up. Which is also very healing you know.
I think she's right. This is the most grownup struggle I have been through yet, and it's not about whining and being scared and not wanting it -- it's about doing what I can because I have to. Ditto for Matt. Maybe more for Matt, unfortunately.
Thanks to Dana for making the panties real...that cracked me up too.
Love you guys.
Friday, July 18, 2008
Hair Today, Gone Tomorrow
Okay, by all you all know I'm not the cleverest writer (esp as they keep zapping my brain cells and feeding me full of weird pills) so please excuse the headline of this post. Later (I am running late this am) I will post some pictures of my lovely new Posh Spice hairdo that Mickel, my lovely hairdresser and friend, gave me. Stay posted...
But more importantly, if you missed the post below the whiney one about The Dark Knight, please take a moment to read it, or just go to www. lungcanceralliance.org and support S.3187, the Lung Cancer Mortality Reduction Act. It's really easy to do from their site, just punch in your zipcode and you will get the people you need to contact.
I can't stress enough that since this bill will fund research NOW, and fast track things that have been languishing...that there is a VERY strong correlation between this bill passing and me living longer. Which I want to do. So please, if you do nothing else, please please do this for me.
Back with photos after radiation! See ya!
Oh, and I will send out an email, but Tuesday The Dark Knight is a GO. It will be hard to eat and gather before the 7pm show, but it gets out at 9:30 so we can go for afters can't we? We're not that old....
But more importantly, if you missed the post below the whiney one about The Dark Knight, please take a moment to read it, or just go to www. lungcanceralliance.org and support S.3187, the Lung Cancer Mortality Reduction Act. It's really easy to do from their site, just punch in your zipcode and you will get the people you need to contact.
I can't stress enough that since this bill will fund research NOW, and fast track things that have been languishing...that there is a VERY strong correlation between this bill passing and me living longer. Which I want to do. So please, if you do nothing else, please please do this for me.
Back with photos after radiation! See ya!
Oh, and I will send out an email, but Tuesday The Dark Knight is a GO. It will be hard to eat and gather before the 7pm show, but it gets out at 9:30 so we can go for afters can't we? We're not that old....
Wednesday, July 16, 2008
The Dark Knight Dream Dies....
For those of you who are in our geeky opening day at the Cinerama for all things sci-fi, hobbit-ey and comic book hero/ine (and you know who you are), I am not going to make it this weekend. Really unbelievable, given it's been on my calendar for almost two years.
We're going to Coulee Dam to see my grandparents (and NOT tell them the news, for various reasons that I am a little conflicted about, but basically, they are just not in shape to handle it so we need to see them pre-hair loss) and celebrate Lucie's cousin Carson's second birthday.
DEFINITELY not as much fun.
But for those of you who don't go this weekend, I am up for making plans to see it next week, maybe Tuesday evening....a little mushroom burger beforehand at 2 Bells? Or after, for post show discussion? Let me know.
We're going to Coulee Dam to see my grandparents (and NOT tell them the news, for various reasons that I am a little conflicted about, but basically, they are just not in shape to handle it so we need to see them pre-hair loss) and celebrate Lucie's cousin Carson's second birthday.
DEFINITELY not as much fun.
But for those of you who don't go this weekend, I am up for making plans to see it next week, maybe Tuesday evening....a little mushroom burger beforehand at 2 Bells? Or after, for post show discussion? Let me know.
Things that YOU can do...
Wow. My lovely friends and family. You have no idea how much your posts mean to me...please keep em coming!
I know that many of you are anxious to help, and to do what you can to make this journey easier for us. As we move forward into chemo, some of that help may come in simple tasks like grabbing some groceries for us, going on a walk with me, fixing a meal, inviting Lucie over for a playdate, etc. (And the lovely Dana Van Nest is going to help coordinate that, when the time comes.)
And, my fabulous oncologist has a pretty amazing foundation that needs support, but I'll post about that later -- I actually have a sneaky plan about getting all my friends and contacts in the communications biz to put together a PSA/PR campaign for it...you know who you people are that I'm talking about...
But RIGHT NOW, there is something that you can do that will help everyone else out there with this stupid, nasty disease. And that is to write letters to your local paper about an upcoming piece of legislation -- the first of it's kind.
Here's some tips and talking points.
Since most papers only allow a small word count, the letters need to be short and to the point. Start by introducing the legislation. Here are some talking points you can use:
--Introduced by Senators Dianne Feinstein (D-CA) and Chuck Hagel (R-NE)
--First ever comprehensive multi agency authorizing legislation for lung cancer
--Authorizes $75 million in first year of five year plan
--Charges DOD, HHS, VA to develop coordinated plans to address lung cancer in its entirety
--Targets institutes within NIH that have nexus for cancer (lung cancer) research
Then share facts about the disease so the public knows why the passage of this legislation is so critical. Lung Cancer Alliance has state specific fact sheets, so let me know what you need.
Finally, give the call to action. Send people to LCA's website, www.lungcanceralliance.org, to send letters to their Senators. It is an easy process and will ultimately save lives!
Oh, and the radiation went fine yesterday. Haven't noticed the dying brain cells yet....love you all.
I know that many of you are anxious to help, and to do what you can to make this journey easier for us. As we move forward into chemo, some of that help may come in simple tasks like grabbing some groceries for us, going on a walk with me, fixing a meal, inviting Lucie over for a playdate, etc. (And the lovely Dana Van Nest is going to help coordinate that, when the time comes.)
And, my fabulous oncologist has a pretty amazing foundation that needs support, but I'll post about that later -- I actually have a sneaky plan about getting all my friends and contacts in the communications biz to put together a PSA/PR campaign for it...you know who you people are that I'm talking about...
But RIGHT NOW, there is something that you can do that will help everyone else out there with this stupid, nasty disease. And that is to write letters to your local paper about an upcoming piece of legislation -- the first of it's kind.
Here's some tips and talking points.
Since most papers only allow a small word count, the letters need to be short and to the point. Start by introducing the legislation. Here are some talking points you can use:
--Introduced by Senators Dianne Feinstein (D-CA) and Chuck Hagel (R-NE)
--First ever comprehensive multi agency authorizing legislation for lung cancer
--Authorizes $75 million in first year of five year plan
--Charges DOD, HHS, VA to develop coordinated plans to address lung cancer in its entirety
--Targets institutes within NIH that have nexus for cancer (lung cancer) research
Then share facts about the disease so the public knows why the passage of this legislation is so critical. Lung Cancer Alliance has state specific fact sheets, so let me know what you need.
Finally, give the call to action. Send people to LCA's website, www.lungcanceralliance.org, to send letters to their Senators. It is an easy process and will ultimately save lives!
Oh, and the radiation went fine yesterday. Haven't noticed the dying brain cells yet....love you all.
Monday, July 14, 2008
And....Action!
We finally have a plan...hooray!
Dr West said that everything looked like he expected from the PET (he was like, "wow, your hip looks like it REALLY has been hurting...let's get that some radiation soon...and here's some pain meds...and let's get you an infusion of Zometa today which is a bone strengthening, cancer asskicking iv.")
EXCEPT.
That there are evidently some brain mets (metastases) that he would have rather not seen. Ah well, the best laid plans of a stage four lung cancer case...all this really means is that we do radiation first, for the next three weeks, get those brain mets outta there, and then move onto chemo and then probably Tarceva the (hopefully) wonder drug. I guess radiation on brain mets is very effective, so at least that's good news.
And hey, at least nothing showed up in my liver, so I don't need to coddle it and can have a glass of wine...
Here's the question...do I cut my hair NOW, or in two weeks? Either way, Lucie is going to be really mad at me...
It feels really really good to have some appointments -- even just getting the zometa today made me feel like we are moving ahead...and putting those cells on notice.
Dr West said that everything looked like he expected from the PET (he was like, "wow, your hip looks like it REALLY has been hurting...let's get that some radiation soon...and here's some pain meds...and let's get you an infusion of Zometa today which is a bone strengthening, cancer asskicking iv.")
EXCEPT.
That there are evidently some brain mets (metastases) that he would have rather not seen. Ah well, the best laid plans of a stage four lung cancer case...all this really means is that we do radiation first, for the next three weeks, get those brain mets outta there, and then move onto chemo and then probably Tarceva the (hopefully) wonder drug. I guess radiation on brain mets is very effective, so at least that's good news.
And hey, at least nothing showed up in my liver, so I don't need to coddle it and can have a glass of wine...
Here's the question...do I cut my hair NOW, or in two weeks? Either way, Lucie is going to be really mad at me...
It feels really really good to have some appointments -- even just getting the zometa today made me feel like we are moving ahead...and putting those cells on notice.
Friday, July 11, 2008
I know the BEST people
Really. You guys have no idea how much it is really inspiring me to know that you're all out there with so much love and conviction. Right back atcha folks.
If it weren't so late, I would write all about my adventures with my first general anesthesia experience. (short version -- it really works! you go to sleep! you really don't have any idea what happens like the tube in your throat! and I don't get sick after! it rocked!)
This is going to be a weekend for some serious sun, relaxing, taking full advantage of my xanax and some lovely red wine and pretending that nothing has irrevocably changed. Then Monday, on to face the future with my serious fricking game face on....
love you all....
If it weren't so late, I would write all about my adventures with my first general anesthesia experience. (short version -- it really works! you go to sleep! you really don't have any idea what happens like the tube in your throat! and I don't get sick after! it rocked!)
This is going to be a weekend for some serious sun, relaxing, taking full advantage of my xanax and some lovely red wine and pretending that nothing has irrevocably changed. Then Monday, on to face the future with my serious fricking game face on....
love you all....
Thursday, July 10, 2008
Monday at 11:40
instead of 3:00.
This is going to be better than waiting for the season finale of Lost. Hopefully I'll like it more.
This is going to be better than waiting for the season finale of Lost. Hopefully I'll like it more.
Lavender Scented Eyepillows
If I didn't know better, I would think these treatments were spa treatments. Darkened rooms with valium and prewarmed blankets tucked around me, hours to just lie there and let the currents of radioactive isotopes, barium and valium swirl around in my head..very hallucinatory. And then, lavender-scented eyepillows for during the PET scan.
Lovely.
Well, not really, but as far as what's probably coming next, I think I'll treasure today's visit to the Swedish Spa....
Tomorrow, it's under the knife to determine conclusively what type of tumor tissue we're dealing with. And then Monday at 3 is our meeting with Jack West...and figuring out just what this is going to mean for awhile.
Love you all.
Lovely.
Well, not really, but as far as what's probably coming next, I think I'll treasure today's visit to the Swedish Spa....
Tomorrow, it's under the knife to determine conclusively what type of tumor tissue we're dealing with. And then Monday at 3 is our meeting with Jack West...and figuring out just what this is going to mean for awhile.
Love you all.
Wednesday, July 9, 2008
Tomorrow and Friday
PET scans tomorrow to show the hot spots...I'm hoping for the first time in my life I am more or less dull and colorless...then biopsy on Friday -- I'll have a nice Frankenstein neck...
The day today started out tough...just wasn't feeling super great about any of this (go figure...). I finally pinned it down - sometimes when Lucie has done something really fun, or gone to a party, and we leave...I ask "did you have fun?" and she'll say "no, because I had to LEAVE." That pretty much summed it up for me this morning. If I have to leave, I don't think anything will seem much fun from now on.
But. The sun was out, I got a pedicure with Denise, had lunch with my good friend Vandy, had a good chat with my dad, visited my boss Dave in the hospital with Kevin and Vandy (just got his kidney removed), enjoyed the evening, made a good dinner with Dana and Finn, and gave my husband and Luicie some big ol kisses. So another day passed, and my bad attitude from this morning passed with it. I think I just need to stay busy and focused on things other than this stupid disease...a disease of which one friend has said, "does cancer know just what kind of a BITCH it's dealing with???"
Ha. Love you all.
The day today started out tough...just wasn't feeling super great about any of this (go figure...). I finally pinned it down - sometimes when Lucie has done something really fun, or gone to a party, and we leave...I ask "did you have fun?" and she'll say "no, because I had to LEAVE." That pretty much summed it up for me this morning. If I have to leave, I don't think anything will seem much fun from now on.
But. The sun was out, I got a pedicure with Denise, had lunch with my good friend Vandy, had a good chat with my dad, visited my boss Dave in the hospital with Kevin and Vandy (just got his kidney removed), enjoyed the evening, made a good dinner with Dana and Finn, and gave my husband and Luicie some big ol kisses. So another day passed, and my bad attitude from this morning passed with it. I think I just need to stay busy and focused on things other than this stupid disease...a disease of which one friend has said, "does cancer know just what kind of a BITCH it's dealing with???"
Ha. Love you all.
Tuesday, July 8, 2008
Nice Poem, thanks Emily Dickinson
Hope is
the thing
with feathers
that perches in the soul and sings
the tune without
words
and never stops --
at all.
the thing
with feathers
that perches in the soul and sings
the tune without
words
and never stops --
at all.
Some FAQ's
Are you working?
I am taking a bit of a medical leave while we figure all this out, but I can still be reached easily at the DS&P address. Everyone at work has been total rock stars about this.
What are you telling Lucie?
Absolutely nothing at this point. I feel great, I am confident that I will be around for years, not months, and so for my dear friends and family with children, I would ask that you not ever talk about me being sick in front of them (unless it gets really bad, then we'll change the game plan).
Do I need anything?
Not yet. Some of those answers will come as we move forward with treatment, and believe me, I won't be shy about asking for help.
I am taking a bit of a medical leave while we figure all this out, but I can still be reached easily at the DS&P address. Everyone at work has been total rock stars about this.
What are you telling Lucie?
Absolutely nothing at this point. I feel great, I am confident that I will be around for years, not months, and so for my dear friends and family with children, I would ask that you not ever talk about me being sick in front of them (unless it gets really bad, then we'll change the game plan).
Do I need anything?
Not yet. Some of those answers will come as we move forward with treatment, and believe me, I won't be shy about asking for help.
Not Good News
As most of you know, when we returned from our epic European adventure, we returned to some really horrible news.
I have cancer. Not just any cancer, mind you, but the gut wrenching, terrifying, no good prognosis in sight kind -- lung cancer. It's been a long three weeks since we got back.
This week is also long -- I am having my final round of tests, scans and biopsies that Dr. West (my new best friend, head of thoracic oncology at Swedish) will use to determine staging, scheduling, and treatment.
There is some good news (good being a somewhat subjective term for discussing chronic disease), and that is that this type of cancer is showing up in more and more women between 30 and 50 (that obviously is not the good part) who have never smoked or only smoked negligibly, and so we are a much more sympathetic group for receiving research funding. AND, there have been some great advances in treatment of this type of lung cancer.
So.
We'll see what happens next week. I know you are all with me and love me and I am more appreciative than you'll ever know of all of the lovely words of support and encouragement that Matt and I have gotten from you all. Wish me luck, and I will post again soon.
I have cancer. Not just any cancer, mind you, but the gut wrenching, terrifying, no good prognosis in sight kind -- lung cancer. It's been a long three weeks since we got back.
This week is also long -- I am having my final round of tests, scans and biopsies that Dr. West (my new best friend, head of thoracic oncology at Swedish) will use to determine staging, scheduling, and treatment.
There is some good news (good being a somewhat subjective term for discussing chronic disease), and that is that this type of cancer is showing up in more and more women between 30 and 50 (that obviously is not the good part) who have never smoked or only smoked negligibly, and so we are a much more sympathetic group for receiving research funding. AND, there have been some great advances in treatment of this type of lung cancer.
So.
We'll see what happens next week. I know you are all with me and love me and I am more appreciative than you'll ever know of all of the lovely words of support and encouragement that Matt and I have gotten from you all. Wish me luck, and I will post again soon.
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