splintered sunlight…thoughts unclear

I feel weird.  It's not rational of course.  It's not like I was just diagnosed, but in a strange way I'm behaving that way.  I think, if I give up meat, ice cream, stuff like that, the cancer will at least be stabilized.  But I don't eat alot of "bad" things.  I don't even eat that much meat, and what I do eat is "healthy" (free-range, grass fed, etc).  I don't eat fast food, drink soda, and I don't eat dessert all that much.  I don't use commercial salad dressing or spaghetti sauce, and infrequently use canned and processed foods.  If I am what I eat, I should be semi-healthy, right?  I see so many people that can't hike five miles carrying twenty pounds and I think—why are those people healthier than me?  They eat fast food, drink soda, smoke, etc…And then there's the whole issue of people who get whole new organs and they're actually in very crappy shape!  It's frustrating, sitting here with my handful of nuts, orange, and smoothie, reading clinical trial research abstracts and scholarly papers.

Sad, you know?

 

Grateful Dead- Box Of Rain

(I had to use this because the song wouldn't upload, so ignore the picture, just listen to the music)

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Nothing is simple anymore

Simple.  An underrated idea.  Or is it?  The idea is incredibly rare and elegant to me.  Nothing's ever simple or straightforward anymore, at least in my world.  Perhaps I need to make that as much a focus as possible, strive toward that goal in all areas of life.  I might make things harder than they have to be.  More than likely, that's just the way it is, and more so when one is ill.

I saw the oncologist yesterday, prepared for a "christmas light" PET scan report.  While it wasn't entirely negative, it confirms what we know:  current machines aren't advanced enough.  The "small ill-defined nodular densities involving the right lung zone" were "too small to be evaluated with PET".  We know the bastards are chomping away at the sugar, multiplying just as fast as they can, but they're mere tweens and flying just under the radar.  

A somewhat complicated discussion ensued.  My (simplistic) side—put me back on Tarceva now, it'll wipe the disease down, I'll be on my way for a couple of years.  His side (despite saying via e-mail that he would treat me "with Tarceva at least") was–wait a couple of months, then use Navelbine (a systemic, hard-core chemo), but you'd be on two weeks out of three".  Translated, this means I'd go in for chemo every week with the third week being a break…so I'd feel shitty ALL the time.  What kind of a life is that?

Long story short, in which it was never clarified why he didn't want to immediately return to Tarceva, I said I was more interested in targeted therapy.  We know Tarceva works, I want to eke out as much time on it as possible and save other medications for next time.  (Later it occurred to me that we may never know if I became resistant to Tarceva, because it was combined with Alimta.  We'll never know if Alimta or Tarceva would work as single agents for me, or for how long.  Did he want me to use Alimta two years ago and save Tarceva for last?  Does he want to wait two more months to ensure enough of a system wash so Tarceva will work again, or does he just not like it?  Hmmm.)

What about clinical trials?  

He said the clinical trial department was down at the moment (no details), why don't I go over to UC Davis and talk to (Dr.) Gandara and see what they've got to offer?  ($ Ka-ching, ka-ching $ !! went off in my head from when I got 2nd opinions at UCSF and Davis)  To which I then requested a referral (Kaiser would cover it).  He picked up the phone, got the clinical trial coordinator at Davis, zeroed in on a trial using toxic goo from a Japanese sea sponge, placed a request for approval.  Ostensibly the paperwork would be sent through the bureaucracy, approved, and the lung cancer expert at Davis (or more likely someone on his team) would evaluate me, I'd get on the trial, or at the very least, he could recommend a particular treatment, and the heat would be off my oncologist.  Not too hard for a win-win situation, right?  I get the feeling referrals aren't difficult to get, but they're saved for last ditch efforts like these…because Kaiser can't offer me a clinical trial like now.  But why is that?

Let me interject here the importance of having an advocate along for appointments like this.  At the time, I couldn't think of the right questions to ask.  After a lengthy discussion with my friend Julie—a former reporter for Forbes Magazine—I saw the holes.  I just hope he'll (the onco) be straight with me when I email the myriad of questions.

He said I only have three referral options for clinical trials: UC Davis, UC San Francisco, Stanford University (where the bro-in-law got the 3-organ transplant).  All excellent facilities, right?  UCSF has nothing for my situation right now, Stanford has a fantastic trial for a substance called XL-184 with or without Tarceva which is also at Davis, and Davis has two other trials that may be suitable–one for the sea sponge stuff–Halichondrin B, and one for Tarceva + Erbitux (similar but targets a different cell "pathway") which looks interesting.  Supposedly there's one for sorafenib (Nexavar, which is currently only approved only for kidney and liver cancer), but I didn't find it on the website.   UC Davis wins for most number of lung cancer clinical trials that I may actually be able to participate in, and bonus points for having at least two great shopping outlets on the way  (keep that in mind, people who want to accompany me to my appointments…)!  So, this is good, I can't complain.

I need at least two more years.  That's how long it might take for some new therapies to get to market, Zactima (vandetanib, whose phase III trial is completed) being one of them.  Those just entering trials will take longer, but I'm hoping it'll be like technology, where it starts to take half the time to get twice the bang.

Before I left he said, "If nothing else, I'll treat you with Navelbine, with or without Tarceva.  Or maybe Tarceva, with or without Navelbine."  He also told me the three questions I'm supposed to ask the Davis people, but the only one I can remember is the one about what treatment they'd recommend.  What did I do with that pocket tape recorder? 

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An end and a beginning

I spent the past few days cleaning house, and the last few hours paying bills and otherwise tying up loose ends in preparation for entering treatment this week, possibly today.

It's just occurred to me that these are the last moments of my "break" from treatment…shouldn't I spend them doing something else?

I've enjoyed being free of side effects the past couple of months.  In exchange for the rash on scalp and skin, crusty eyes in the morning, super dry skin everywhere, loss of head hair, unusual growth of facial hair, a bit of nausea (from Alimta anyway) etc…I got pain (which I really didn't have while on treatment).  In a strange way, I think I might've felt "perkier" while on Tarceva, although I've probably blocked from memory the days I didn't feel all that great.  My overall impression while on treatment was that I felt pretty good.  Side effects in the beginning of the year were getting pretty intense though.

What I'm hoping for is to feel pretty good after the initial side effects.  In a way, it's more of a new beginning than a return to something.  Believing the idea of being disease-free or in remission isn't a good idea, because it's false (miracles not withstanding).  But anytime a break is possible, I think I'd still celebrate it.

So should I have drank a bunch of wine since I can't drink while on treatment?  Or should I have stopped drinking to prepare my body to accept treatment?  Is it the end or a beginning?  Both, I guess.  The real beginning was 3 years ago, and the end… I keep trying to push back.

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Enjoy your beauty while you’re young

Seriously.  Take pictures.  Be vain.  Wear whatever you want—sequined dresses, wild vintage get-ups, hot pants, leather…TAKE PICTURES.  (Well, take pictures regardless, even now.)  Pull out the stops.  You're young, you can get away with just about anything, especially fashion crimes.  Make enduring friendships (so much harder when you get older).  Love yourself, enjoy nature—both of these are fleeting.  Pristine reefs?  They won't last 20 years, at the rate we're polluting them.  If you're inclined to scuba dive or rock climb (real rocks), do it now.

Diving in Cozumel

YosemiteKCphoto

Who wears beaded vintage sweaters in Yosemite?  I guess I did.  We weren't doing anything really hardcore that day.  I think we were watching climbers on El Capitan.

The Gang -Yosemite

What's it like to be abducted by environmentalists?  I can't begin to describe the intellectual and spiritual growth I experienced among such wise people.  On my own, I floated like a leaf on the breeze—wild, aimless, without goals.  A different kind of adventure, but not sure I learned all the right lessons, especially emotionally.  

Try to recognize the wise, and take their guidance wholeheartedly.

Enjoy life, love your friends, be yourself, respect your body.  Long may you run.

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The science and the sorrow

Vacations are nothing if not ephemeral.  They're supposed to be a break from one's routine.  So in the case of a cancer patient, a break in treatment is just that–a vacation–a chance for one's body to recover from the constant beating by strange drugs.  And as often happens with vacations, the mice will play when the cat's away.  Which brings reality crashing down, rather than a sort of smooth transition back to the mundane.  There's never a smooth transition with cancer.  What's happened with my break in treatment was I stopped thinking like a cancer patient and started thinking of the future, while the nasty buggers started proliferating into my body's uncharted territory.  I started making plans, noticing my weight gain, thinking of going shopping.  Maybe not to the extent true normalcy brings, but for a minute I was feeling pretty good.  Then the aches and pains stepped up, and it occurs to me I should've taken the symptoms more seriously.  It's that thing with vacations, when you've finally started to relax, and it's over.

Back in the real world, my schedule looks like this:

Sleep in until husband's tv/phone calls and cat clawing carpet wakes me from an already disturbed sleep.

Phone conversation with mother-in-law about husband's denial of my condition.

Hurriedly eat before 6-hour fast deadline for PET scan.

Stand in shower, consciously savoring smooth skin and thick hair, as these will be just memories once more.  Think of how good I feel, rather than how bad I ache.  Remember that I was in worse shape when I went to London two years ago, but I still felt pretty good.  It's all about distraction and enjoyment.   Resolve to go on major trip this year, whether it be to Asia/South Pacific or back to Europe.  Think of all the things I have to do this weekend while husband travels again.  Think of the future—I can't seem to help doing that.  Think of Betsy Watson, who was in complete remission for 4-1/2 years and then a relapse took her in 10 days.  Breathe.  Realize I've been in the shower a long time.

Do laundry, talk on the phone, cut away dead iris branches in the front yard.

Research targeted therapies.  

Weep at sudden onslaught of photos from younger days, sent by people I've known but haven't seen in forever…curse yet ponder that giant time sucker called Facebook…(Thank you, Karen, for the photos!  I'm having trouble separating them off the scanned format though).  The subjects of these photos would fill a post or five–

Jazz on top of the world

I wish I'd taken more photos when I was younger.  I have a few scattered here and there, but not many.  They're amazing to gaze upon.  I like the candid ones best.  I definitely value them much more now than before I got sick.  The husband's still not much into taking them, although he just got the new iPhone with video—ostensibly for work.  I'll have to railroad him into recording some of our adventures.

After reading another Voxer's cancer journey on her other blog, I realize I'm not very emotionally honest here.  I don't say half of what I think or feel about what's happening to me.  Her blog seemed so much more powerful to me because it was emotional—her anxieties and fears, her fatigue, the exuberance of being on holiday and marveling at scenery, her sadness at having her beauty ravaged by the side effects of medication—I know those feelings and could relate so much.  Oh I suppose I expressed some of those things once, but if I did, I don't recall.  I feel like I've always been sort of stoic on this blog, and that's so…internalized, open but closed.  Maybe she's just a better writer!  And maybe that's why my husband thinks everything is fine.  I've been a Devil Dog about this from day one.  I'm feeling a bit weary these days.  Sometimes I just want to be pampered.  Sometimes I just want to cry.  (He always gets mad when I cry.  It's a Marine thing.)

As for the science part of this little outing, I may just have to do another post.  Suffice to say, the three new therapies I could consider are still in trial—Zactima (vandetanib), by Astra Zeneca (makers of Iressa (gefitinib))–which can be paired with Alimta (pemetrexed, which I was on for 2 years), Nexavar (sorafenib), and Tarceva (erlotinib) combined with Targetrin (bexarotene).  This is from a great article in the summer issue of Cure magazine, which can be found here.  There's a cool chart titled, "Agents in the pipeline" which I'll try to lift.  There's also the Stimuvax vaccine (Phase III trial) and rhApo2L/TRAIL, which targets TRAIL death receptors DR4, DR5.  What does it all mean?  That's another post.  Additionally, there's Afinitor (everolimus), which is an mTOR inhibitor.  It interrupts the cancer cell's signal below the surface of the cell, bypassing the process which mutates and causes drug resistance later.  This is the new generation of inhibitors, but god knows what the side effects are.

Well, back to research.  More on the stoic, scientific part later.  Right now I think I'll answer emails.

Mexico

Thanks also, Molly, for the photos!

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Onward to battle, or F*#k you, cancer

"Aren't you scared for me?", I asked Hubster.  "No.  I know you'll smack it down like you did before."  If I didn't know him better, I'd think he was just being brave, but I think that's what he believes.  I don't think he can imagine me being completely unable to do anything, especially take care of him!

As we walked to the snow bubble shop in Alameda after signing our lives away on offer #8—a house in Martinez, CA…way, way out in the 'burbs, closer to Walnut Creek…where I'll be spending alot of time again— the weather was beautiful, I didn't get shortness of breath, I didn't feel horrible, I thought, well, maybe I'll die another day.  I have eight more lives to go, and I'm not completely actualized, so I've got to go on.  I have two more Harry Potter movies to see, and they better be worth waiting for (unlike the past two).

My latest CT scan is unnerving, if not downright scary.  I almost cried, except I was on my way to the realtor's office and couldn't fall apart just then.  Now I'm just in a daze.  Maybe it'll hit me again later.

The enemy is back, the Death Eaters and Dementors, and they've set up shop in my right lung now too (or maybe they were there before, but not that I recall).  Another PET scan (hopefully not more scary news), and after that, I go back on my old friend Tarceva.  So all the hair growth and and smooth skin—well, it was fun for awhile, but I'd rather live and breathe. I'll have to get a haircut, a bunch of massages, a wax (TMI, I know), and eat piles of grapefruit in the next week.  I've eaten enough BBQ meat in the last 4 months…I'm okay without it for a bit.

Now I admit I've "back slid" the last year or so.  I haven't been the cancer avenger/activist I could be (not that I was ever, too much).  I even missed the ACS Alameda Relay for Life this year.  It's like praying only when one is desperate.  Yup, Mea Culpa.  I haven't been eating the asparagus wonder drink.  Heh, YOU try eating two tablespoons of pureed asparagus every morning and every night.  But I'm cooking asparagus now, eating cherries (helps with the pain), bitter melon, pineapple…call me fruity, I've read it helps.  Anyone who knows where I can get guyabanos (cousin of the cherimoya)—speak up!

I don't know how to feel about embarking on the homebuying thing while winding up for another throwdown with lung cancer.  A wise woman (Brenda Davis) once told me, do what you're going to do anyway—buy a house, travel the world, whatever.  I guess NOT doing concedes defeat.  On the other hand, what if I need the money for treatment?  What if I'm too tired to negotiate a crappy interest rate?  

At this point in time, owning a home seems to be what would make Hubs happy.  Illness aside, I want Hubs to be happy.  If I can't have my wish (be cured), then at least he should have his.  It could be healing.  If I can't travel, maybe finally attaching the idea of "Home" to a concrete reality would be some consolation.  My nomadic lifestyle will truly come to an end, which saddens me, but all good things must come to an end.  (Of course, he's not the one worrying about all the paperwork—homeowner's insurance and all that.  Let's hope I'll be firing all cylinders by then.)

I read my friend Naomi's account of her brain metastasis.  I wept and knew I hadn't even begun to feel fear.  She is so brave and so stoic, it's amazing to behold.  (Hubs took me to see Harry Potter and The Half-Blood Prince to distract me.)  I've just met another Voxer from the Netherlands—another sister in Tarceva—barely 30 and standing at the front lines.  Tomorrow is the 3 year anniversary of my first visit with Dr. Simmons.  I'd like to see next year's anniversaries—wedding, diagnosis, whatever.  We may never be cured, but we won't go down without a fight.  So hang in there with us, will y'all?

Tarceva, or Erlotinib—Clinical Trial packaging

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One of these days

Maybe we're not meant to buy a house in this friggin' area.  7 offers, people—Seven (the number we've attempted)!  Ok, we lost the bid on the last one (see "Nerves" post) to an all-cash offer.  Some investor threw down around $350k in cash and it was accepted.  There were at least two other offers, and ours was considerably more, but cash is king, every time.  I'm irritated, especially as Hubster's gone into desperation mode again, looking at things we wouldn't normally consider.  And that effing short sale in Alameda…well, the bank's in no hurry, are they?  The government's given them an influx of cash for the moment…they can stand to make us wait.  It's been over 3 months since we made the offer on that ridiculous beater.  Anyway…

I'm seeing the oncologist tomorrow.  I've been feeling quite alot of pain lately.  It's been over six months since my last scan, and my bone biopsy was in February, so perhaps it's time for a check.  I would be disappointed but not altogether surprised if I'm experiencing progression.  Like I've said, the doc never used the "R" word when he took me off treatment.

I've not been on a huge trip so I'm disappointed with that, but I'm thankful for the 4-1/2 month reprieve from chemo.  Time goes by so fast.  People's reactions are very interesting.  I think most people believe I've been cured and things just go back to normal—I should be able to run around like I used to.  I should work and recreate and carry on normally, but that's pretty far from the truth.  No matter what, every day is a battle.

I went on Cancergrace.org to browse around, see what's new.  It was difficult.  But I've got to make myself face the fact that at some point, if not right now, I'll probably need treatment again, and I need to be ready.  If that time is now, well…here we go again.

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QotD: A Few of the Challenges I Face

What challenges stand in the way of your ideal lifestyle? How are you working to overcome them?
Presented by Intel, Sponsors of Tomorrow.

Well, cancer, for one thing.  It's a constant struggle made possible by the contribution of many, many people, along with my own ornery attitude.

Having a spouse who travels constantly is quite a problem, especially as it makes him not want to travel with me, should he manage to have the time.

Money…isn't that what most of the problem is?

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Nerves

Mike's in Canada and I'm meeting with our realtor this afternoon for pizza and to submit offer #7 for a house in that far-off, suburban land called Pinole.  Needless to say, the other homes in the area have all experienced multiple offers (the house across the street had 7 offers last week), and although this house is wallpapered up one side and down the other, and half its lot is upslope, and my realtor hates it personally…it has solar panels installed, double-paned windows, central air (it gets HOT in Pinole), boat parking, and 1681 sq. ft. of wonky 1968 rancher floor plan, along with ugly pergo floors and an overly large laundry room (like, half the size of the master bedroom) with lots of storage.

I neither love nor hate this house, but it's much less than what we'd pay for that beater in Alameda, it's much larger, and I might still be able to travel once a year to some more enticing faraway land.  Of course, I write this because I have that awful gut feeling that we're offering way too much, in anticipation of yet another multi-offer situation.  The hubster is tired of losing bids—he doesn't want to lose out on this one, inspite of its lack of pool (swim center nearby though) and the possibility of endless renovation ahead (both cosmetic and substantial).  The listing agent already has one offer in hand, and supposedly (again there's that distrust) was told 5 others were going to write, although she hasn't seen them yet.  Offers will be viewed tomorrow at noon.

Hubs already has fantasies of growing grapevines on the upslope and converting the back studio/shed into some sort of inlaw-type apartment for guests.  Of course he's never home so this could take years.  I can only console myself with the fact that Pinole has a Trader Joe's market, Peet's coffee, Target (like a higher end Wal-Mart-type place), and Kaiser clinic, and it's not too far from the (highway) 24 corridor and Walnut Creek (where my oncologist is).

Well, I should probably get on with writing that >gulp< deposit check.  Wish us luck!

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Asian, like me

This is the sort of predictability I like:  when the Hubster comes home from traveling (which is like, three weeks out of the month), I know exactly what he wants to eat—every time.  I love it and can't make it, so it's a bonus for me!!  Hubster's a "Round Eye" so it's a delightful surprise—

Sushi and a Bubble drink!!  Yay!  

Sushi

Bubble-tea-drink

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