Tuesday, June 29, 2010

Epidermal dishonesty

I have never shown my kids my scars. I have one very long gash up the front of my stomach, and a round, button-like lump on my upper right shoulder where my port is (not-so) hidden underneath my skin.

In fact, we've never really talked with the kids about the cancer. For heaven's sakes, they're only 3 and 2 years old, and I haven't SEEMED sick to them, so... we just let it go. If Betty asked, we would have addressed it, but she never did.

I guess I was afraid the scars would freak them out. I didn't want to have to explain what they meant. I also figured I could buy some time. The stomach scar would continue to lighten until one day it was no more than an unalarming, pale vertical stripe, and the port will be removed (but not for at least a couple years, I'm told. Dash it all.) (For the record, I am getting rid of most of my bandeau-style shirts and tank tops that don't hide the port. If you have one you'd like, send me your address. I'll mail it to ya!)

Today Betty was playing with my necklace, then her hand wandered over to my shoulder, and she looked up at me. "Do I have a dot like you do?", and she pulled down the shoulder of her shirt so I could inspect her clavicle area. I realized she was acknowledging my port, and in fact, the way she'd so calmly asked about it made me think she's seen it plenty of times. I told her she didn't have a "dot", only mama did. She asked me to look again, as if I would find one if I looked hard enough.

She wasn't freaked out at all.

Same day, little Rhodes and I were playing in my room. I was tickling him and he jumped on top of me. He pulled my shirt up to my belly button, pointed at my scar and asked, "Oww?", then he looked at me searchingly. I realized he had seen it before, too. I chirped back, "Nope! No owies. It doesn't hurt. Mama is fine!" He smiled and continued playing.

Two scars noticed in one day.

I'd been dreading them seeing me scarred, thinking perhaps they wouldn't be able to handle it. But clearly, the issue really belonged to me.

Someday, when they're much older, I'll be able to tell them about all the scary things that happened to us this year, right under their little runny noses. For now, I'm so glad they feel like everything is and has always been just FINE: Mama and Dada are happy and healthy. Only good things happen! The world is forever a safe place.

High five, Neil. We pulled it off.

Sunday, June 27, 2010

Waiting for the good news to sink in.

Oddly enough, just after I got the best news of my life ("cancer's gone!"), I have this sort of dark post to make. Not sure why, but I'll go with it because I know that no matter how I'm feeling, it's just part of the process and it's ok. (Look at me! A therapist would be proud of that statement.)

Ever since I got my "all clear" results, I've been sort of holed up in my house, enduring the chemo. I have not been partying like you might imagine. You know how, when you're sick, everything is just harder to handle? Little decisions suddenly become difficult to make. "Do I want a glass of water or not? I CANNOT decide.... hmmm... Well, maybe a small glass. No, no. Definitely not." Tiny hurdles can almost feel insurmountable. "Oh my GOSH, are you KIDDING ME? I forgot to run the dishwasher last night? HOLY CRAP. Now I have to run it this MORNING." So being a little under the weather (chemo) has sort of stunted my ability to think about what has happened in the last few days.

I think I am just really backlogged, trying to process all these emotions. I haven't even touched the "YOU'RE IN COMPLETE REMISSION" yet, and all that that means.

Here are the ridiculous thoughts I'm thinking, all at the same time.

-Part of me still wonders if the cancer is REALLY, TRULY gone. I mean, this is my life we're talking about, I really don't want them to make any mistakes here. If there are still a few bad cells hidden in there somewhere, they BETTER be sure they've found them and are going to get rid of them.

-I never can completely forget the fact that, statistically, this sort of cancer sometimes tends to come back. Even though my recovery has been remarkable and I really seem to be beating all the odds and statistics, my vivid imagination does not serve me well here. I envision scenarios 6 months out, 1 year out, 3 years out, where my doctor has to tell me that bad news, "It's back, Shelly. 8 more months of chemo." I then do the math to figure out how old my kids will be by that age, and what I will need to tell them so they can process the terrible news of mommy being sick. (Torturous, I know! And stupid!) Usually I am able to squash this line of thinking before it gets too far developed, but not always. I think that's just a natural part of coming to grips with all this, but it still aint fun.

-I wonder why I'm not more overjoyed about hearing the words "You're in complete remission". Is it because I've spent so many months getting used to the idea that I was "sick", and that now it's hard to just instantaneously erase that? Is it because I don't really believe it could be true? Is it because I feel like it's potentially only temporary? Is it because, now that I feel like the real danger is more or less gone, I can finally feel sad and angry and scared?

-Amidst all this, I know that tons of people would KILL to be in my shoes. From stage 4 in December to ALL GONE in June. That's insane! I'm so lucky I should get some sense slapped into me. (quick! someone slap me!)

I'M SORRY, I KNOW, THIS IS ALL SO NEGATIVE! WHAT THE HECK, SHELLY? This is so unlike me! Bear with me folks. I will come around. This is just how I'm feeling right now, and I'm not totally sure why.


p.s. It is now one day later, and for some reason I feel incredibly hopeful and happy. I considered deleted the above post, but I figured it might be interesting to you, to see the ups and downs that A SURVIVOR goes through. Moving forward, I can see myself being in the "hopeful, happy" camp more often than the "dark depressed" camp.

What a crazy experience this is.

Friday, June 25, 2010

I am in Complete Remission

This will be a really quick update, as I'm very tired and feeling overall nasty from the chemo, but I need to let you all know what's going on.

1- According to my PET results, I have no more cancer left in my body. ****This means I am in complete remission.***** (insert expletive here.) My mind is truly reeling. I am still trying to believe this is true. Massive news like this, oddly, is difficult to ingest. It's almost like I'm still waiting for the moment when it's going to sink in, and then I'll start jumping for joy. (I think this is a protective mechanism I've built up, after having gotten so much bad news early on.)

2- I have to do 4 more rounds of chemo, just to be extra safe. (some cancer can conceivably still be there in tiny, undetectable amounts--this would hopefully take care of that!) Then I'll have one more scan, to check things again. That will be at the end of August.

3- I will still have to take medicine (Avastin) for a year, but that's not chemo, so it will be no big deal by comparison. I probably will have scans pretty often, too.

I feel thrilled, confused, excited, nervous, unsure, full of wonder and gratitude, and tired. I also know I am not out of the woods yet. The scary truth about Stage 4 colon cancer is that in MOST cases, it DOES come back. Usually within 3 years. I am going to have to get my head set so that I can live well knowing this possibility exists. This is going to be a process for us-- it's not over yet.

And I know that sounds all Negative Nelly, so here's some Positive Polly: With each month that passes, they are developing better and better cancer drugs. Truly, 2 of the drugs that saved me were developed in the last 2 years. Another was developed 4 years ago. Imagine what they'll have three years from now! Secondly, if the odds aren't with me, so what. The odds have been solidly against me this entire time, and I've known it, and I've beaten them all. I think part of it just has to do with the fact that I am not the average person to get this disease: I'm much younger, much healthier, and very determined.

My doctor told me that the progress I've made thus far ranks me on scale of 1-10, at a 12. Think of it. In January I was wasting away, post-surgery, with stage 4 colon cancer (there is no stage 5)--tumors in my lung and liver. In June, the cancer is completely dead and gone, and I'm doing absolutely terrifically.

It's remarkable, and yet I still can't believe it's all happening. I now have as much cancer in me as YOU do (which is zero, baby.)

I am sure that over the next few days I'll be processing all this and I'll have some epic blog postings. Til then, just know that I'm doing great (although sort of despising this chemo, which IS, as they predicted, getting more tiresome each time), and am utterly, completely grateful to YOU, yes YOU, for being my friend and supporter. Collectively, your messages of love and support have made me KNOW that my life is definitely worth fighting for. And so I did.

And it looks like I won?

Wednesday, June 23, 2010

Will it be Lucky #13?

Today was an exceptional day.

The USA won their World Cup match in the last few breathtaking minutes. The longest match in tennis history occurred at Wimbledon, with the match finally being suspended due to darkness at 59-59 in the fifth set! (Ten hours of tennis with no winner, are you kidding me?) A very close friend of mine won their dream job and is completely, utterly thrilled. Also, it was a ridiculously gorgeous day in Seattle.

Goodness all around. With the way things were rolling, I felt pretty sure I'd also get an extraordinary phone call from my doctor. But no one called. (So, no results yet.)

That's ok, though. Oddly enough, I'm not really sweating over these results. I have faith that things are moving in the right direction for me, and if this test does not yield the "all clear", the next one probably will. Sure, I'd like to hear the words, "Your cancer is gone" (not to mention the words, "Soon your chemo will be FINISHED", because that crap is getting _A_LITTLE_BIT_OLD), but I know there's nothing I can do to influence those results. The test is over, now it's time to wait.

It's a strange thing, this cancer business. For most people, your actions directly influence your health. You exercise and eat well, you lose weight and stay healthy. You brush your teeth, and prevent cavities. You wash your hands, and you won't get a cold. You wear sunscreen, and your skin won't prematurely age. But with cancer, I can do everything right, but I can't really do a damned thing to change the course the disease decides to take. I am not whining here, I am simply marveling over the strangeness and inequity of it. It's not like I "had this comin'". I was living a pretty clean life before my colon decided to stop editing out its mutant cells.

Ok, I think there are a few exceptions to my "I can't do a damned thing to change all this"-statement. I can eat even better, I can stay positive, I can exercise, I can see good doctors and take good medicines. I know, I know. But even so, only so much is within my control now. And for a headstrong young person with big plans for her life, this is a tough pill to swallow.

Actually, I think I just realized something: Was any of it ever truly in my control before? Or did I just THINK I was the person pulling the strings?

Well, that's a big question for another day. Right now, I'm laying in bed, prepping for my big day tomorrow. It's Chemo #13. And my doctor is going to tell my what he learned from Tuesday's PET scan. And I'm going to be ok with it.

And I promise to let you know what I learn!

Monday, June 21, 2010

Really big scan tomorrow!

Tomorrow at 10:30 is my big PET scan. Hopefully it will yield the results of "all clear! cancer is gone!" I should get results by Thursday, but possibly sooner.

Til then, I am on a strict PET scan diet. This is just one more way the cancer gods STICK IT TO YA:

"24 Hours Prior to PET-CT scan
No sugars or carbohydrates, avoid the following items:
• Bread, pastry, cereal, pasta.
• Fruits, (no tomatoes),
• Desserts, muffins, crackers, candy, cookies, cakes, ice cream, yogurt, jams, jellies, honey
• Soft drinks, milk, soy milk, tonic water, juices, beer, alcoholic beverages.
• Starchy vegetables (rice, potatoes, corn, lima beans, soy beans, parsnips, peas)

You may eat:
• Meat, firm tofu: do not use sweet sauces and do not bread the meat
• Eggs, prepared without milk
• Cheese, butter, mayo, unsweetened peanut butter
• Non-starchy vegetables (Broccoli, asparagus, spinach, green beans, cauliflower)"

I have to run now, as it's 10:15, and I only have 15 more minutes to cram in the carbs and fruit and starches. This is serious business. What the H am I doing on my computer?!

Cross your fingers for me, please!

Tuesday, June 15, 2010

Lavatory Love

I just wanted to say that on the 4-hour flight home from Ohio, my kids needed to use the airplane bathroom not once BUT FOUR TIMES.

This particular airplane's bathroom was so small that there wasn't even a changing table behind the toilet. While standing in there, the three of us were all touching each other. There wasn't even space for space between us.

The kids had kicked off their shoes and socks, and so they were barefoot. (i tried to re-shoe them but it was to no avail, and when you are flying alone with two kids aged 3.5 and 2, you pick your battles). In the bathroom, there was amber-colored fluid pooled up on the floor just below the toilet. Betty started jumping in it, making mini splashes, as if we were frolicking in a rainstorm outside our house. I shudder to think of whose urine had soaked into my ankles. The hairy guy wearing the kilt in 27C?

The kids essentially palmed every surface in the bathroom. Toilet seat. Area behind toilet seat. Flusher. Door. Floor. Sink. Garbage pail. You name it. I tried so very hard to keep their little chubby starfish-like hands at their sides, but no dice. I tried even harder to then keep their hands away from their mouths, and I was about 70% successful. (As for the other 30%, hey, it's just good clean dirt, right?) I washed their hands when done, and when we returned to the seats, I Purell-ed the hell out of them, but all the while I wondered how long the gestation period would be for whatever virus and bacteria they'd acquired. Would it be a stomach flu, a cruddy cold, or something far more sinister, the kind of thing you'd only find under a dirty toilet seat in a dark, cramped lavatory? Ah well, WE'D FIND OUT IN ABOUT A WEEK!

The results are in: it's just a cruddy cough, an extra-runny nose and a grouchy disposition. A little long-distance dedication from the business traveller in the exit row, perhaps. No barfing, no scabby rashes, no worms. I think we dodged a bullet. Things are looking up for us, people! I think this is going to be OUR YEAR!

Monday, June 14, 2010

New feelings and fears

Just a quick status check-in from everybody's favorite soon-to-be-cancer survivor.

I'm gonna hammer this post out, so pardon the wordiness and lack of editing. Kids are napping, so time is precious right now.

Ok, it's Monday. The sun is shining, banana bread is baking, mom is coming tomorrow night. The last few days have been interesting for me, emotionally. I have shifted into yet another phase of "coming to grips" with all this. And there seem to be about 9,000 phases of coming to grips with having cancer, because every time I think I have a handle on the whole cancer thing, another aspect of it comes to light and throws me for a loop. Then I learn to deal with that one, and all is well for a bit, then the process repeats itself.

[For the record: All in all, I think Neil and I (and all our family and friends) have done a superb job getting used to the idea that this is all happening and not completely freaking out. So, A+, people.]

Lately however, I have been thinking a lot about what comes next. Let's assume this cancer does in fact GO AWAY soon. That will be awesome!, of course!, and i should be doing back flips over the fact that this seems to be the direction I'm headed. But for some reason I've been fixated on the rotten idea of the cancer someday coming back. How does an ex-cancer patient move on, knowing that the cancer might at any time COME BACK? Maybe in 2 months, maybe a year. Maybe 3 years. Are you ever safe? Can you ever just exhale with relief? THere is no rhyme or reason to it, some cancers simply re-emerge on the scene. Others never do. And I have no idea which camp I'll be in. But how do you go on living with that uncertainty? UGH.

I guess I will just have to choose NOT TO think about it. And just to keep on living, happily and gratefully, all the time keeping the hope alive that my cancer will just have been a fluke thing that is now done and gone and never coming back.

Still, I keep hearing these blasted reports about someone who WAS in remission but now their cancer is back. DAMN CANCER. Why does it do that? I mean, if the chemo kills it all, why would it re-emerge 3 years later? I don't understand this disease. I wish I could go back to those innocent pre-cancer days, when I was invincible and I absolutely KNEW I was going to live to be 100.

I suppose in some ways it's a gift to be grateful for each day you have. To take nothing for granted in life. To be conscious of the fact that it's great to have been here at all. But honestly, I think I'd prefer to be living with blinders on, like I used to, unaware that I could die at any time. It's so much EASIER, not to mention a lot more FUN.

Anyway. I have MY NEXT BIG SCAN on Tues, June 22. This time around my doc has ordered me a PET scan, the granddaddy of all scans, the big kahuna of the scan world (a note to my doctor friends out there: Feel free to correct me if this is not true, and the PET scan is actually a minor scan-- it sure SEEMS like a big deal.) They make you get there really early and over a period of an hour, you have to drink two containers of this vile fluid. You are not allowed to move (!) as movement will cause your body to process the sugars you are ingesting and those will show up on the scan and give you inaccurate results. The idea is, any cancer cells will process the sugars faster than regular cells, because cancer cells are hungry, needy little suckers, and thus they will show up on the scan as darker than the healthy cells. So the goal is to have NO DARK SPOTS on the scan, as those indicate abnormal cells.

Then they inject you with all sorts of biohazards so you light up in the scanner like a Christmas tree. Then they create something like a topographical cross-sectional map of your physiology, so they can see all the mountains and valleys of your your organs. Then, just before you are about to leave, you get violently sick. For about 10 hours. (At least I do, but then again, you know me, I'm such a sensitive girl.)

The fact that my doc ordered me a PET scan and not the ol' standby, the CT scan, shows me he might think this will be the scan where I'll learn that I'm cancer-free. Because it's so comprehensive. And he had told me he hadn't planned on getting me another PET scan until after we learned I was cancer-free.

So. There is a peek inside my head for the week of June 14th, 2010.

And: if you wait a week for my PET scan results, I can show you a peek inside my entire abdomen!

Wednesday, June 9, 2010

There's no place like home.

While back in Ohio, a series of gigantic storms raged through town one night. Like Dorothy before us, we had to retreat to the basement--twice!--at midnight and again at 3, in case one of the tornados decided to turn down our street. The thunder and lightening was intense, kind of exciting actually (for me, not the kids). The devastation was notable: a local high school destroyed, a fire station ruined, and tons and tons of homes obliterated. And all of it, just a stone's throw (well, if you throw like Ichiro Suzuki) from my parents' house. Also, 5 people died. Some down in their basement, just like us.

I was thinking about how strange it is, that you could start out the day like any other, then randomly be plucked from your basement and thrust into a stormy vortex. Death by tornado. No thanks! I remember thinking, "MAA-AN. After ALL I've been though, I'm sure as HECK not going to let a stupid tornado take me out." (and alongside it, imagine me doing that wavy-finger gesture that people do while they say, "OH NO YOU DI-INT!")

Needless to say: WE LIVED. Disaster averted. And for the record, it was FAN-FREAKING-TASTIC to be home again.

Coming soon to a blog near you!: Shelly decides to write something uplifting.

Bite me

Ohio has the best insects.

I just returned from an 8-day extravaganza in the motherland. SO fun.

I feel so happy lying in bed at night, windows open, drapes blowing, listening to the crickets and the .... to be honest, I'm not sure what combo of creaky insects are responsible for that noise, but it just sounds so quintessentially OHIO SUMMER to me. Mix that with the the wind in the trees (my fave sound), and I sleep like a baby.

The locusts, when they come out, only add to the effect. They make a GREAT noise. If you haven't heard it, well--- go Google it or something. They're pretty fascinating insects, actually, but that's a story for a different post. Another fascinating, fascinating post.

Then there's the lightning bugs, popping up in the dark backyard at night. My kids thought those were fun to chase. I guess I took it for granted that we got to spend summer nights growing up collecting those things. (I am dangerously close to sounding like Andy Rooney now.)

BUT: the mosquitoes can go suck themselves. They're not really a problem in Seattle, so I'd forgotten how annoying they are.

The real injustice here is that you'd think they'd take one bite of MY BLOOD, in all its toxic nastiness, and they'd do the mosquito equivalent of running to the sink and spitting their mouthload directly into the drain. BUT NO, they bit and bit away. I was hoping this might be one of the little-known PLUS SIDES of getting chemo, the natural mosquito repellency, but alas.

Before all this is over, I'm determined to figure out SOME cool side effect chemo has (like acting as a very expensive and drastic mosquito repellent). Stay tuned.