Fun Game Ideas

Okay here's today's challenge -- Denise pointed out that if we only had some of those lightweight velcro balls, we (well, you) could toss them at my head to see how many would stick...what other fun games with a fuzzy head can we come up with??

Hope you all had a lovely holiday and have good plans for New Year's. We are definitely going out, I think the general consensus among our friends is that we all want to kick 2008 out with a vengeance. Hooray!

Creepy Old Man Head -- Technical Medical Term for my hair regrowth

Ewww.

But still. It has to start somewhere. So curly black it is.

We did it! Scans came back with no changes to the baseline (i.e., cancer has not increased from the seven weeks ago when I finished chemo....generally accepted as a good thing). I will have one more scan in three weeks..or maybe six weeks? (Jack if you are reading, can you post and confirm?) If that scan is all good, then scans will only be every three MONTHS. Hooray!!

And my lovely friend and nurse Dawn gave me the most wonderful little gift -- she had her whole family put good wishes and love into a beautiful orange (my favorite!) and yellow glass heart, that is currently living on my windowsill where sunlight (if we had some) will stream through it.

Thanks for all of your good thoughts and wishes -- love you all!

Cosmic YOP!

Okay, all you Whos down in Whoville....Tuesday is my scans day to find out if the Alimta is working.

I want it to be working. I have a ton of energy, my hair is growing back (My dome currently looks like a dirty snowball, according to Lucie...) and so far, except for maybe this weird puffy eye thing, I am having no side effects.

So, please, if you think of it between now and Tuesday, please think positive thoughts my way -- every little bit helps, as we have all learned from our wise friend Horton the Elephant...

xxoo, mp

No One Expects The Spanish Inquisition!

Or the REALLY weird side effects that can come with cancer treatments. Check out my eyelashes.

Trichomegaly of the eyelashes, they call it.

A very rare side effect of Erbitux (which I am no longer on). They are literally so long and tangled that I look like I have mascara and black eyeliner on, 24/7. Which is kind of cool, I guess, except that there's a reason I don't usually wear that kind of makeup - and that's because I look like a floozy raccoon because my eyes are so small...

What else? Oh yes, I finally got my entire face waxed -- got rid of all of the swiflty growing BLACK hair on my upper lip, chin and even cheeks. I know what all those nervous looks were about....that I was really a shape shifter, and I was going to turn into a wolf at any moment...

Now if my bald head would catch on to all this hair growth going on around it, I would be a happy woman!

Christmas List

1. technology to post these freakin' radio spots!

It's just not working...I have uploaded, stored, shipped...and it just doesn't happen. So. If you want to hear the PSA radio spots we did, you will need to ask me to email them, as they are not postable in my blog. Bad blog!

Humbug.

Testing, testing...1-2-3..Is this thing on??

http://boxstr.com/browse/melissynp/4025454

What the heck?

I have these great radio psas that I'd like you guys to hear...but no way to upload mp3s. The upload video option isn't working. Anyone know how to do it?

Announcement

Okay, so for the past six months or so, we've been engaged in a journey together, my dear blog supporters. And so far, it's been a good journey (despite the topic-- namely, me with late stage lung cancer) -- how could it not be, with people like you on my side?.

But starting today, through when I have my next scan (not sure when...maybe 2 months from now?) -- I don't want to talk about MY cancer anymore. I feel really good on the Alimta, and frankly, need to have this time to learn how to live with cancer more like a chronic illness than a death sentence.

I will still post on cancer -- we're doing some great PSA's (thanks to the prodigious talents of Matt and Vandy) that I want you to hear --and I am hoping to do a cool photoshoot with my very talented friend Tara so Jack (Dr. West) will have some great shots for the Grace website...but MY cancer? That's off limits for the next little bit. I want to really enjoy this holiday season...it seems like a long time since I have felt this NORMAL, and I want to take full advantage of it.

So be prepared for lots of Lucie and Matt posts, and just general Peterson family merriment. It's the holidays, and there is much to be grateful for and to celebrate that doesn't always revolve around stupid little cancer cells that harsh everyone's mellow.

Love you people. Melissa

FYI

The chest x-ray you see IS NOT MINE. There were all sorts of issues with Seattle Radiologist sending the wrong one (!!!! Yikes, wonder who has mine, since we have Tim Matthews), and then they evidently never sent the right one...so we'll be looking at some b-roll of some unknown person...

King 5

is going to air tonight at 5.

Cool Party, 'Cause Ninety Five of our Favorite People Came!

So we had cake, we had prosciutto, we had booze, we had a rock band (thanks, SweetLou!), the one thing we DIDN'T have was a photographer or our cameras with us.

Thankfully, Pam brought her camera all the way from New York, and was able to snap some candids, which I will upload onto Facebook shortly.

What a great party. What a great crowd. So many out of towners, WOW!! And I am so sorry that I had no voice to really express how touched and grateful we have been with all of your support and love.

And how lucky I have been with my Man of the Year, Matt, to get me through all of this.

xoxoxo, Melissa

News Segment, King 5 Healthlink

Am pretty sure most of you know about this, but Dr West and I did a segment for the news last week, orchestrated by the lovely folk at Colehour+Cohen. Initially, we thought it might air Wednesday, but now it looks like it will hit closer to the November 19 Lung Cancer Awareness Event, co-sponsored by Swedish, Fred Hutch and Virginia Mason. They will let us know, and I will post it here in plenty of time (I hope!).

Go Obama........

What's Next?

Whew! The big gun treatment is done for now, and today we're doing baseline scans to see what the troops accomplished. No one (meaning me, Matt and Dr West) is particularly worried about what we will find, so please don't read this and start fretting, if you are the fretting type.

Then, tomorrow, I start my first "maintenance drug", Alimta. I have been told by several of the lovely chemo nurses (remember Dawn? Lucie is marrying Sam, her son, when they are old enough. I want her as an inlaw!) as well as Dr. West that Alimta is a piece of cake. Mild to no side effects, a short (like half hour) infusion once every three weeks, and the best thing -- a B-12 Shot every three weeks! (They are GREAT.)

Which just goes along with my assessment of cancer treatment at Swedish. You are treated like a rock star. Good drugs, shots in the stomach and rear (which Dawn also handles painlessly and quickly), catered lunch, warm blankets, lavender-scented eyepillows, personal knitters, and in my and my rock star doctor's case, film crews that follow us around and ask us to talk to them.

So then it's just Alimta until it doesn't work anymore -- and we'll be checking that with periodic scans (nope, don't know how often - haven't asked yet).

So that's it for now -- hoping to see all you lovely faithful readers next Saturday -- doors open , food arrayed, bar open at 6pm, and the band (we have a band! we have a band!) around 8:30.

The Party Details

Matt and I are so excited to see you all for the Matt Peterson Birthday/Melissa Peterson Done with Chemo Extravaganza!

Dress is very casual --remember, I'm BALD for goodness sake!

Doors open at 6pm, and we will have nibblies, wine and beer (and liquor for purchase). My fantastic friend Bryan Cohen's band will be playing at approximately 8:30. They are called SweetLou -- they are kind of Americana/Alt Country/Pop, and if you haven't heard them before, here's a link:

http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendID=78570469

DIRECTIONS:
Sole Repair (aka 'the Shop') can be found just off of East Pike 1 block past Broadway on Seattle's Capitol Hill. Located right next door to Quinn's, and directly across the street from Neumos.

SOLE REPAIR - the shop
(206) 979-SHOP
1001 East Pike
Seattle, Wa 98122

PARKING
Parking is located in the following locations:
- 10th & East Pike - Located directly south of the Sole Repair building - $7.00 pay parking
- Pike & Broadway - Under and directly next to QFC - $0.00
- Broadway & East Madison - $5 pay parking
- Street Parking - Available where you can find it $0.00 after 7pm (all day sunday)

"The most incredibly lifelike baby money EVER!"

So my friend Bex in Portland is also going through chemo. She just posted on her blog about what surprisingly good reading material her oncologist's office offered. So I looked around at Dr West's office, and he has some good stuff too. Then I went down to the treatment center...and all I could find to read was a Ladies Home Journal and a Palm Desert Living. So I picked the LHJ. And I found this ad.

WHO BUYS THIS KIND OF STUFF?!? Especially for $150!!

My next treatment I am stealing something from Dr West's office to read.

Save the Date!

November 8 for a combo Matt-turns-39 and Melissa-is-done-with-chemo party....details to come, but think evening, think Capitol Hill area-ish. All are invited, so let us know if you are planning on coming so we can make sure there is enough wine, beer and comestibles!

Caveat on the post below

I want you to understand that I have only lost (and it goes back and forth) 5-8 lbs. Nothing scary.

Some Say...

That I remind them of Jean Tripplehorn. Some have said (really only in NZ where they worship her) there's a touch of Elle MacPherson. Some say Kyra Sedgwick. And currently, there's a lot of Sigourney Weaver in Alien, Sinead O'Connor...you get it.

But. There's someone new. Karen Carpenter.

WHAT?!?

Okay, let me explain. Yesterday, visiting with Dr. West, discussing my weight loss/weight gain (which is fine, by the way), I told him that it wasn't that food tasted funny, metallic, or otherwise, it is simply that I am just not interested in food at all. Nothing intrigues me or entices me (except on the odd occasion, like with the queso or fondue). And he told me that the strict medical term for me right now (like what would go in my charts) is ANOREXIC.

Who knew?!?

Last Round Starts Today

Yeehaw! Last round of chemo (of this sort, anyhow) starts today.

Let's all think really good killing thoughts today -- I want reduction of cancer on a massive, American-corporation type bailout scale, not the "slight reduction or stabilization" that Dr. West is expecting from this second half.

Vote for DJ and Waterfront Fish!!

Hey everyone, DJ and Hallie's Waterfront Fish has been nominated for the Best of Western Washington -- here's the link:
http://best.king5.com/contests/best-of-western-washington/2336/great-meals/seafood
Voting closes on Monday, so if you can, please support them by voting --some of you have had their fish and chips, and know that they are out of this world! And even if you haven't, take our word for it...:-)

What kind of Cancer did he die from?

YES, THAT WOULD BE LUNG CANCER.

I find it very interesting and more than a little disheartening that the stigma of lung cancer is so strong that everyone knows that Paul passed away from cancer, but no media is saying what kind. That's one of the biggest challenges facing us. Lung cancer is always the one people can blame on its victims, and not feel bad. Let me give you some facts, if you haven't already heard this from me...

1) LC is the leading cause of cancer death in the US, far exceeding both breast cancer in women and prostate cancer men.
2) Despite the lethality of LC, it receives less than one eighth the research funding per cancer death than breast cancer, and less than one quarter of that for prostate cancer.
3) Though lung cancer is first detected as locally advanced or metastatic in three out of four people who develop it, there is no established screening plan. Our current system is that you wait for symptoms, but lung cancer is typically clinically silent until it’s too late to cure.
4) More than half of lung cancer in the US is detected in former smokers or never-smokers. Female never-smokers are consistently more likely to develop lung cancer than men, for reasons we don’t understand.
5) Advocacy for lung cancer have been severely limited by its poor survival, as well as the stigma we have assigned to it.
6) Despite the challenges, many new treatments for lung cancer have emerged over the past decade, and survival is beginning to improve. We can make a major impact against the leading cancer killer in this country.

So tell everyone you know -- Paul Newman died of Lung Cancer, and then get them engaged in the Lung Cancer story -- I guarantee most will be very surprised.

Pasta Recipe

3/4 cup drained oil-packed sun-dried tomatoes, sliced, 2 tablespoons of oil reserved
1 pound Italian hot sausages, casings removed
2 (8-ounce) packages frozen artichoke hearts
2 large cloves garlic, chopped
1 3/4 cups chicken broth
1/2 cup dry white wine
16 ounces fusilli pasta
1/2 cup shredded Parmesan, plus additional for garnish
1/3 cup chopped fresh basil leaves
1/4 cup chopped fresh Italian parsley leaves
8 ounces water-packed fresh mozzarella, drained and cubed, optional
Salt and freshly ground pepper
Directions
Heat the oil reserved from the tomatoes in a heavy large frying pan over medium-high heat. Add the sausages and cook until brown, breaking up the meat into bite-size pieces with a fork, about 8 minutes. Transfer the sausage to a bowl. Add the artichokes and garlic to the same skillet, and saute over medium heat until the garlic is tender, about 2 minutes. Add the broth, wine, and sun-dried tomatoes. Boil over medium-high heat until the sauce reduces slightly, stirring occasionally, about 8 minutes.

Meanwhile, bring a large pot of salted water to a boil. Cook the fusilli in boiling water until tender but still firm to the bite, stirring often, about 8 minutes. Drain the pasta (do not rinse). Add the pasta, sausage, 1/2 cup Parmesan, basil, and parsley to the artichoke mixture. Toss until the sauce is almost absorbed by the pasta. Stir in the mozzarella. Season, to taste, with salt and pepper. Serve, passing the additional Parmesan cheese alongside.

Shannon Brown is the Winner Today!

Winner of what, you say? Who is Shannon Brown (some of you say)?

Well, as you know from my latest posts, food is becoming a bit of a challenge for me...it tastes fine, but NOTHING really sounds good. I'm burnt out on thai food, not that into icecream anymore...yikes. But then something comes along, like a bloody mary or Matt's queso suggestion -- fantastic!

My friend Shannon sent an email last night saying that she was thinking of me because she made a yummy artichoke sausage pasta that I made for her once....THAT IS WHAT I WANT TODAY. Who would have ever known? Chemo sure is a tricky treatment to navigate....

Chemo and Queso

Who knew that it was the secret combination I had been looking for?

Blog, Blog, Blog

I have nothing to report.

How are all of YOU?

Second, Third, Fourth Opinions

Everyone was so POSITIVE yesterday. It's taken me awhile, however..so I reached out a little further to see what other people (those who don't love me and act as my cheerleaders thought -- not that your enthusiasm doesn't mean the world, I just wanted to talk to people with lc, too).

So I posted on a couple lc blogs, asking the random lc folks what they thought about 50 percent after 6 weeks -- they gave me the definite answer that it's worth the happy dance (the happy dance is big with this community) -- they reminded me that there are a ton of people that chemo doesn't even work for, or gives results of like, 5 percent. And one woman who got to 50 after six MONTHS.

So I am humbled, being reminded once again, that I am a lucky one so far in this battle. Not only in results, but also with my fabulous support group -- your blog posts keep me up and laughing and so missing seeing most of you in person. As soon as this chemo is done, I am throwing a party (surprise Matt!:-).

I also asked Jack via email last night (yes, that would be Dr. West -- since I am working with him on some of his foundation stuff,and I will probably know him the rest of my life) and this is what he said.

"50% is a ballpark of the volume change, since it's not really a sphere.
That’s good. About 25-35% of lung cancers show that much shrinkage with
first line chemo, perhaps 1% with no evidence of residual disease (a
complete response). AND YES, PEOPLE, I WAS REALLY HOPING FOR BEING THAT 1 PERCENT -- BUT THE GOOD NEWS IS THAT SINCE I HAVE SIX MORE WEEKS OF CHEMO, MAYBE I STILL CAN!! OR EVEN BUMP THAT 50 TO 75-95 PERCENT. MAYBE I BETTER START EATING MORE BROCCOLI.

Another 40% or so will be "stable disease", ranging
from a less impressive response to no change to slight progression with no
new lesions.

About 25-30% will show clear progression of the cancer as their best
response to initial chemo."

Alright then. I am on board. Besides, I'm not quite ready to give up the blog, are you? And for those of you who feel like it, I am now accepting guests at chemo (I am running out of things to watch that don't offend the lovely nurses). I am usually all ported up by around 1 or so (but that is definitely a variable)...just call if you're in the neighborhood...


xxooo, Melissa

Halfway gone, Halfway done

The scans are good.

Dr. West said that there was about 50 percent or so reduction, which is great. Of course, I was really hoping for 90-95 percent, but that's not exactly realistic, I guess. :-)

Also, I found out what he meant when he was discussing "four vs six" in terms of chemo. "One" represents an entire three week cycle. But when he was talking about four vs six, I thought he was just talking about four weeks of the cisplatin...ooops.

So that means six more weeks of chemo to go. I was a little bummed at first,, but honestly, I want more than 50 percent gone, so I am going to buck up, have a good attitute, and continue the battle.

Back into the breach....back into the breach....

Love you all -- mp

So far, I'm flunking Week Three

No, really. First, my port didn't work, and so it had to get an enzyme put into it. Which meant that they had to do my bloodwork from my arm, which is not usually a big deal, but for some reason, it really hurt.

Then, my counts came back so low that they had to give me a booster shot.

Then, I woke up the next day (yesterday) with a fever of 102, which is very bad, so I had to go BACK to Swedish and get more blood work, under the threat of a small possibility I would have to be admitted to the HOSPITAL overnight. Yikes.

The good news is that the second batch of blood work showed that my white cell count was out of the danger range. The bad news is that I still had a fever all day yesterday, which really sucked.

Today I am resting and recuperating, and hopefully the glorious Week Three will still show itself to me....

Here comes Week Three, Hooray

One thing (among many) that I have learned about chemo is that not only does it affect every individual differently even if it's the same cocktail (cocktail sounds better than toxic chemicals), it also affects the SAME individual differently each cycle. The first cycle I was just tired, but not that nauseous, and this cycle, I have been somewhat less tired, but definitely MUCH less (read not at all) interested in food.

My staples, oddly enough, are ice cream sandwiches, pink gatorade and thai food (zero stars).

No pasta. Those of you who know me well understand that this is very strange indeed, and that the last time I was uninterested in the venerable noodle was when I was pregnant. That really was the last time I liked ice cream too. Chemo is weirdly like going through pregnancy again (although I feel better about those occasional glasses of wine:-) --- and I hope when I make it through to the other side, I am almost as happy with the results as when we had the Luce.

Pretty worry beads courtesy of my awesome cousin Mandi -- I know you said I should put them in different places around, but I like em right in one place next to my bed -- they are more of a statement!

Have a good week, all...and tune in on Tuesday the 23rd to find out if I have the final round or not....whee, it's kind of like watching Lost.

Fingers Crossed

Today, Dr West said,"I don't want to overpromise anything, but I think I am going to have really good news for you when we do your scans."

That's my news.

Oh, and he MAY not make me do the last cycle of three, depending on what he sees. Although, he is a bit of a masochist, so he may change his mind. (OKAY, SO THIS WAS A HUGE MISUNDERSTANDING ON MY PART --- I WAS ALWAYS GOING TO HAVE 12 WEEKS, IT IS JUST THAT THE SCHEDULE WASN'T SCHEDULED THAT FAR OUT SO I THOUGHT I WAS GETTING NINE WEEKS, AND THEN WHEN HE WAS TALKING ABOUT FOUR CYCLES, HE MEANT FOUR CYCLES OF THREE WEEKS. CAN I BLAME CHEMOFOG?)

Either way, it looks like we have surely kicked some cancer cells into submission, at least for now.

Happy, happy dance. This news will definitely get me through the rest of the chemo regime.

Couldn't do this without you, my loyal family, loved ones, random blog readers that I don't know but would like to. Big smooches all around.

You can take the girl out of Republic

But you can't take Republic out of the girl...look, A BALD MULLETT!

Yikes.

Wow Do I Ever Love Week Three

It's amazing. I like to eat, I like to drink wine, I actually like to get off the couch! It was like I was a normal (but bald) person in Leavenworth....I even shopped at the Christmas Store...and that takes some fortitude!

Now back to the Land o' the Blahs....:-) and my ever faithful Kraft Mac and Cheese.

But at least I know what is waiting for me in two weeks....and then I am 2/3 of the way done. (And, I don't want to get ahead of myself...but for those of you who have SEEN the swollen lymph nodes in my collar bone...they really do look like they are shrinking and softening up...all good things.)

Hoping and Hooray!

Three Cycles down, Six More to go

Whoo hoo! Made it through the first third.

I do have to say, looking at that last post, that it was definitely some hubris on my part talking big about 75-80 percent...in fact, that second week ,day three through five kicked my rear. I did my third round yesterday (just Erbitux and Zometa) and felt pretty good until today, when I woke up with a fever of 101.8.

Off to the doctor we went, fully expecting to be admitted to the hospital to get some white blood cells...but it turns out that my counts were actually fine, and the fever is probably due to the Zometa.

But they gave me a booster shot (in my stomach -- I totally felt like that story of Ozzy Osbourne after he bit the heads off those bats in the eighties...) of something that produces white blood cells and some antibiotics just to get me really solid for the weekend, which is great as we're heading to Leavenworth with some friends on Friday.

Starting to get the dreaded rash...not too bad yet, but my lovely chemo nurse tells me that it's bound to get worse before it gets better. Isn't that always the way?

Love to you all. xoxo

Moving onto Cancer News...but don't miss the post below!

Had my second chemo yesterday which was let's see, THREE hours shorter, which was great. I was only there from 1:00-5:30! So far today I feel pretty good, not quite as spacey, but definitely am going to take it easy today.

Dr. West assures me that feeling only 75-80 percent is really GOOD, and that I should really be happy and try to relax into not being 120 percent for the duration. He reminded me that I am lucky to feel as good as I do, lots of people don't. So okay. I get it.

Clearly, it's time to order Battlestar Galactica the series (I'm doing that right after this, so no one get any great ideas of doing it for me....:-)), get further back into AbFab (thanks Vandy), watch all three Lord of the Rings back to back, finish up Firefly (excellent choice Dana, even if the chemo nurses don't like it) and find all the really bad romantic comedies Matt never lets us go to.

All while enjoying the non-alcoholic wine my friend Pam sent yesterday. I have to tell you all....Monday night, I was ready to put some serious damage on this lovely little italian red I've had my eyes on all week. Poured a glass, smelled heavenly. Drank a big gulp, and almost choked. It didn't taste bad....it just FELT like hydrochloric acid in my mouth and throat. Insert expletive of your choice here.

Darn it. So, maybe they have made great strides with non-alcoholic wines since I was pregnant with Luce. Maybe not. I will taste and report.

xoxo - melissa

For My Foodie Friends

So...you eaters.

A friend of mine and Matt's (and many of you who read this blog) Ka:ren Jurgenson (who is also from Republic, and it is at her mother's house that I learned, to my great delight, what REAL mincemeat pies are -- booze, meat, and fruit -- hooray) and two other women have a great cookbook coming out, called "Chefs on a Farm."

It's available for pre-order on Amazon.com, and having been the recipient of many a great meal prepared by Ka:ren (sorry, the A is supposed to be an umlaut but I don't know how to do that), including my WEDDING CAKE, I can wholeheartedly recommend anything that she has put her hand to. Also, it's all about good and local, which is great. Who knows, if we all start eating closer to home, maybe so freaking many of us won't end up with inexplicable CANCER.

Eat On!

Day Three

Still feeling good, but I hear that the first week is sometimes a little deceiving. I am definitely chemo-brained...just a little more ditzy than usual, and forgetting some words. I hear it's nothing to be alarmed about...that my brain will come back. And it certainly makes bad tv seem less bad....

Had three glasses of red wine last night, and delicious pasta...then it occurred to me this morning that I should probably check to see if I am supposed to have wine.

They weren't too impressed that I had wine the day after my first chemo session.

They told me that I can have a small glass of wine (I don't have small wine glasses, sorry!) five days after chemo. Which puts me at able to drink Sunday and Monday. Hmpf. Unless I count my chemo day on Tuesday...hmmmm...then I could have some on Saturday, too!

Sigh. We'll see. They are actually trying to make me better, so I probably should cooperate a little bit. Besides, my liver won't have had this much rest since I was pregnant with Luce.

So I dressed up like a Pirate

Silly, I know (but I am reading a great re-telling/re-working of Peter Pan called Tigerheart, so Pirates are on my mind).

I looked, well, probably not fierce, but in black from neck to toes (which are actually a lovely "I'm not a waitress red" color). with a GREAT pirate scarf (if pirates are prone to mulberry paisley patterns) and giant hoop earrings and this awesome bracelet that looks like pirate plunder that my friend Pam sent). But it was kind of fun for me, anyway. Nobody else got it right away....since pretty much everyone I saw yesterday was either a chemo nurse, my doctor, or someone in treatment...and we all wear big scarves.

I also brought a plethora of things many of you have sent, and next week will change it out with other things. Honestly, you have all been so kind with everything -- the blog posts, the random cards, the healing reiki's, the gifts, and offers of help. I love you all. Thank you.


CHEMO (long)

Deinse very kindly drops me off as my appointment isn't until 1pm, so Iit's likely tht this first day I won't get home until around 7:30 (yeah, it was 9pm....thanks Matty and Lucie). First I met with Dr West, who gave me about 15 prescriptions for nausea and RASH (for the Erbitux) -- including Emend, Zofran, and some other thing for nausea, and about four different ones that can help the rash. Thinking about it, amybe the rash will helpout with the pirate look -- it will be like scurvy or the pox.

Matt and I read through my file (I took it downstairs to chemo with the orders on it -- it's pretty cool to look at your chart and see what doctors think about you (because they DO comment). My radiation oncologist called me a "delightful 40 year old..." How nice is that? Anyhow, the thing that we were really looking for is the result of the baseline, as Dr West said, "yes, it looks pretty much the same...) Well, what is the pretty much? The tumor is exactly the same size. 17 mm. Are you kidding? Is something REALLY THAT SMALL responsible for so much chaos? And I have NO new lymph involvement, but the ones I do have have increased in size, but not significantly.

I LOVED reading this. One of my panicky late night can't sleep thoughts is always -- where's it going now? Is it getting bigger? It's been two months already!! And there's the answer. So if everything goes to plan, everything (even that eeeny weeny tumor) should get smaller. And then I just take drugs to make any cancer left, INEFFECTIVE. And as Dr West says every time we see him, "Melissa, we have SO many options right now, this is just the very beginning, and I am very hopeful about this for you." Aww. Me too.


For those of you reading this who HAVEN'T or AREN'T currently getting chemo, the port is pretty cool. However, if your port was only installed on Friday (hooray form more general anesthesia), and is kind of black and blue, that first shove of the needle (and believe me it's a shove) is a wee bit more painful than I was expecting. Even with the lidocaine. (Okay,my friend in Portland I know I am whining because you had yours the next day and I can only imagine - erg).

So then they pump you fulllllll of saline. Don't bother with the elephant exhibit, just come over and look at my ankles. And then the moved onto Benadryl in preparation of the Erbittux which very infrequently can send people into massive allergic reactions. So, Benaryl straight through into the heart.

WOOZY. Then Erbitux for one hour, plus one hour of monitoring after. Then other premeds -- zofran, then ativan (oooh, lovely...I hope I get that every week, it's quite nice. Then nevelbien (which is the old person's chemo -- I refer to it as navy bean soup, because it's easier to remember and nicer sounding if you like that kind of soup. It only takes 6 miintes, so it's fast.

The biggest bummer of the day comes when I find out that with the Cislatin, I have a 10mg does of decadron (that awful calf ruining steroid). Not negotiable. Oh well, it's only 10 mg once a week, instea of 8mg every day, so maybe I will escape unscathed...Then the Cisplatin, which even the chemo nurse (LOVELY WOMAN, and always works Tuesdays, hooray!) That's one hour as well. Then another hour of saline, and I was good to go.

Wow. This is really long, and frankly probably not that interesting to most of you. But, that was yesterday, all in all, not too bad.

Came home and had some LOVELYfood that Ka:ren and Marcy prepared (flipping through some of the magazines Marcy so nicely shared) and fell asleep at 10 and hopefully started to a serious pirate-like massacre on those bad cells.

And today...feel good. Little tired still. Tomorrow, who knows?

Have Been Assimilated

and it wasn't bad. Except for the part where I had to be at the hospital at 6:30 am. But the nice folks kindly put me promptly back to sleep at 7:45, so I guess it was a pretty good deal, overall.

Port is fine -- he gave me a smallish one so it wouldn't be "obnoxious" (I am dubious about that as a port description but again, he was the one wielding the knife, so what do I know?). He only gave me IBUPROFEN for the pain...what happened to that nice oxycontin with tylenol from my biopsy??? Same doc....huh. Well, it doesn't hurt YET.

Spent the rest of the day relaxing with my lovely dad -- we watched Cassandra's Dream AND In Bruges. I have to tell you I have never been a Colin Farrell fan -- these two movies may have changed my tune a bit. They were both really good, and he (esp in In Bruges) was great. And Cassandra's Dream has Ewan MacGregor, so go figure, of course that's fun to watch.

Not much else to report. CT scan on Monday, starting Chemo on Tuesday and as Robert Frost says "The best way out is always through." Here we go.

Again, love and hugs to you all. I can't tell you how the notes, the jokes, the email, the care packages, your thoughts and prayers are really helping me feel strong and optimistic and frankly, healthier.

xox

The Plan

Okay, so careful what you wish for, I guess...it's GO time. Tuesday, next week. The chemo drips.

I guess Dr West changed his original plan for me...the "chemo isn't going to be a cakewalk, but shouldn't be too bad..." to "well, I think that we are going to use this awesome combination of an OLD SCHOOL chemo drug (Cisplatin) with Nevelbien plus this cool new Erbutix...the Cisplatin is pretty heavy duty, but I think we want to be a little more aggressive to start. If you spend all your time throwing up, though, we can change to something else."

Sounds good.

But, the cool thing is, the combo with the Erbutix is something kind of new (and actually not approved by the FDA, but Dr West is working around things so it will be hunky dory with insurance...). They just had a big trial and it was presented at ASCO this year..and 70 percent of the people in the trial with a some sort of genetic mutation (no idea, I will look up) did amazingly well -- lots of shrinkage and stoppage.

And yes. I have that mutation. So let's cross our fingers that this is going to be a wildly successful first line for me. And, of course, it's proving me true on the timing...five months ago, this wouldn't be an option for him to try. More things are coming online ALL the time. And Dr West talked about that today. We have lots of things to try -- this is the first, and man, I am feeling positive. So two weeks of Cisplatin/Nevelbien, week off....for three cycles total. The Erbutix is every week for six weeks.

Oh, I also am getting assimilated into the borg -- Dr West also changed his mind about the Port-O-Cath, so back into surgery I go Friday...probably just as well. After all, I am planning on having years of blood tests, treatments, etc -- so why not make it easy on the veins? Also, Monday we're doing a contrast CT of lungs/etc to get our baseline started...it will be interesting to see what has happened in the last month while I have been lazing around getting radiated....hopefully not much.

Okay, so that's the treatment plan. Bring on the puke bags!




Except for the nausea...and evidently the Erbitux causes MASSIVE acne.

New Petition, Please!

http://www.lungcanceralliance.org/involved/sign_the_petition.php

Thanks all.

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!!

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.

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!!

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.

The new hair - and hat from Denise!

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....

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.

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.

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.

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....

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.

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.

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.

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.

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.

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.