She never stopped smiling

One day closer to the weekend, and none too soon, at that.

I realized it's been exactly two weeks since I last wrote. It's not that I haven't had things on my mind - mostly while walking in the desert, or in the times before I fall asleep - but it's getting those thoughts to form words, and words to form an entry that is the trouble.

She's gone. Renee's sister Michele died yesterday morning. She was surrounded by her family for the last couple of hours. They talked about the best times they had together, and Renee said she started smiling and just never stopped. She was able to say good bye. How the HELL do you say goodbye...

I'm heartbroken for Renee's loss. For Michele's husband's loss, for her kids' loss. For her parents and her friends and everyone whose life she touched. I didn't even know this woman, but I know that cancer took her too soon. It's always too damn soon. I find myself thinking, "at least she wasn't hanging on, in pain" but is that just my way of trying to make sense of the senseless?

How does this happen? It was only about eight weeks since Renee told us about her sister's diagnosis. I have to remember that we don't know how long it was growing inside. We don't know so many factors. All we know is that she's gone.

I have to make a conscious effort not to insert myself into her story, because it's not my story. It's not my outcome. It's not my diagnosis. Yet the nagging voice in my head that I try to stifle is a subtle reminder that the whole situation hits pretty close to home. As much of a realist as I am, I just can't let myself think of a time when I could hear the words, "I'm sorry, there's nothing we can do." I like to think that there always HAS to be something, but the truth is, there isn't always something. But that doesn't apply to me right now.

This morning while hiking we saw this older couple that we often pass on the trail. Greg commented to them that they are able to sleep in a little now that it's getting light later. She responded something about being able to adjust to the clock. I smiled, as I love seeing these two in the morning, still hiking, still vibrant. They've got to be in their 70s. And then I got choked up at the reality of the fact that there's a good chance that I may never have the chance to retire. I couldn't let myself stay in that place in my mind very long. The fleeting thought was enough.

I've found myself a bit frustrated at the whole state of some things. Frustrated that nobody can seem to figure out what causes most cancers, or how to cure then. Frustrated that yet another person I work with has been diagnosed, and today went in for her lumpectomy. Frustrated about the fact that Tina is left feeling mutilated and like a freak without hair, eyelashes, a breast - because I know that feeling. Frustrated that Andrea's cancer came back. That Tom was diagnosed with colon cancer. That Renee's sister died. Frustrated sometimes because I have managed to become this shining example of the fact that Stage IV, NED can exist, that people can actually both survive and thrive with metastatic disease...
What happens if one of these PET scans comes back showing a spot? I'll be absolutely crushed. Not only that, but I'll feel like I just stole hope from too many people that were counting on me to shatter the myths.

I suppose I'll cross that bridge when and if I come to it.

The thing is? I know in the big picture I have absolutely nothing to complain about. I have a great husband, a nice house, a decent job, friends and family who love me, two pretty cute - albeit ridiculous - dogs, the energy to hike and walk and live. Who really cares about unruly hair, or chemo-stained veins, or nails that need to be covered with polish because they are still kind of ugly, or the fading scars on my abdomen that will mostly likely be permanently slightly mangled up, or the stent from my eye that crawls out my nose, or the fact that I'm just not as young and pretty as I used to be. As much as I hate to admit it, every now and then the trivial many make the slightest bit of difference. Maybe that means I'm human. I guess the good part is that it means I'm still alive.

I still don't get God's plan. I'm starting to believe that I'm not supposed to.

Godspeed, Michele - you'll be in good company up there.

God's plan?

Every now and then I am blindsided with the reality of the fact that I dodged not only a bullet, but a cannonball. Right now, I'm feeling pretty damn fortunate to be here, to be healthy, to have the world in my hands, hair on my head again, and love in my life. I don't know why that is the case, I don't think I'm supposed to know why that is the case, and I can't ever forget that it could change in an instant.

We saw Renee in late September to hand off the shirts for screen printing for the 3-Day. She told us then that her sister had been diagnosed with liver cancer and that she was waiting to hear more news. A couple of days later, she updated us with the news was that it was Stage 4 cancer on her colon and liver and they were planning to do a PET scan to see if the cancer has spread anywhere else. She was going to start chemo in early October and Renee told us the doctor said she had five years at best.

Of course, my initial reaction was that this cancer stuff simply sucks. However, knowing Renee, and hearing that her sister has a very similar personality was reassuring. Typical me, I reiterated my belief in the fact that the mental drive to fight works wonders, and that I despise the fact that any doctor gives a timeline for longevity because it's so inaccurate. I told her that as we've learned, every statistic has a bell curve, and if I listened to the statistics, who knows if I'm supposed to be here today. That's one thing we've always loved and appreciated about Dr. C - while he's never minced words or sugar coated anything, but not once has he ever put a duration on life expectancy.

And on we went.

Last night I got an email from Barb, followed by an email from Renee this morning. Her sister went to the oncologist on Monday and was told that the PET showed that her entire liver was compromised and that there is nothing else they can do for her as her liver is shutting down, which is irreversible. She was told that she probably has a couple of weeks left. Renee is headed out to see her, knowing that she could likely have to say goodbye.

Whoa... whoa. Wait a minute. This isn't supposed to happen. I repeat:

Silly me, living in my own world, thinks that all Stage IV cancer patients can fight. All Stage IV cancer patients can achieve NED status. All Stage IV cancer patients can win battles.

Can't they??? Damn it, CAN'T THEY???

I go through my day as if I'm not even affected most times. I wake up - we go for our walk or hike. I have my coffee and smoothie. I go to the gym. I go to work. I come home. I watch baseball. I eat. I love. I laugh. I'm not in the hospital, I've never been in the hospital for more than an outpatient procedure. I don't have to have regularly scheduled procedures for draining of fluid in my abdomen, or my lungs. I'm not on my umpteenth round of different cocktails of chemo. Instead, I'm continually building strength, building hope, falling down and picking myself back up, thriving...

And all of a sudden I realize - HOLY SHIT. I am not the rule, I am the exception. People die. People like ME die. The cancer spreads and it's not always able to be surgically removed or or zapped away. Why I am I so fortunate to have the quality of life that I do? More importantly, why am I so fortunate to still be here at all?

So many of us believe that God has a plan. That we don't exactly know what that plan is, but that there is one. I fluctuate on this theory. Assuming that it's valid, however, I've questioned numerous times how cancer fits into this mysterious plan for me and while supposedly none of us are given more than we can handle, why I have had to handle so much. Is it because I can? Is it like when I started the chemo and once my body was handling it so well, Dr. C not only kept me going weekly instead of having every three weeks off, but also upped the dosage? Is that part of the reason I am where I am today? That it's more dependent on science, rather than God?

Then I realize - maybe it's not that I have been given the cancer, but that once I dealt with it, I have been given the opportunity to live. Maybe, as I've been told, part of this mystery plan for me is to go out and inspire and shine a light on the world - or little parts of it. Perhaps I am meant to be a conduit by which people - even one single person - can look at the world a little differently, or hold their loved one a little tighter, or make decisions that they can be proud of, or realize there is more to life than the grind they endure every day, or plan a romantic evening, or take that trip of a lifetime before the opportunity slips away, or remember to savor that one perfect moment when they wake up in the morning and it's a new day.

I've been going about my business as if it was never up for discussion that I would persevere. Today? I realize that I still have no idea why I was fortunate enough dodge the bullet but I am so thankful that I managed to duck at the right time.


Grand Canyon winter
Inhale the cool mountain air
Exhale the demon

Each scan will bring a new reason for wanting it to be clean. Whether it be the first one, or the second one, or the Canyon or the next anniversary - there really will never be a "better" time than another for it to come back less than flawless.

Meanwhile, I can't still spend time living from scan to scan. Imagine what I'd miss in the meanwhile.

Sometimes I feel as though I did too good of a job breaking out of the fortress that I had built around myself. I think that sometimes, in some ways I've turned into what a friend referred to as the fragile flower, when speaking of her own experiences. The hearty, vibrant bloom with an exterior that betrays the fact that inside - ironically, in what's called the "ovary" - are pieces that need to be treated gently and with extra care. Most times, I feel that it would best suit me to find the middle ground between the glimpses of fragility and re-growing some of that elephant's hide.

The rest of the time, I just keep going, living, loving, breathing.
It's still what I do.

Miracle patient
Love hope strength treatment believe
Continue to thrive

Awareness of awareness...

Ironically, aside from the recent media blitz, there hasn't been a lot of cancer conversation these days. It's been a welcome respite. The irony of that is that we're right in the throes of Pink-tober, and Sunday is this year's Race for the Cure. For the first time since 2000, aside from they year I was out of town, I'm not running. At this point, we're planning on going down there and walking it. In many ways, I'm looking forward to that, as the run always stressed me out so unnecessarily. This way, we can just be amongst the masses, and I'm not racing against my own personal time clock and running into the same wall year after year - chemo or not. In other ways, I'm a bit apprehensive at being lost and overwhelmed in the sea of pink. But Sa and Liz went to Great Adventure and walked last year. Mom and Sa walked in NYC this year. Shel runs every year in NYC and this year did fundraising, too - with my picture on her homepage. Greg ran last year with a crumpled up knee - not to mention all that he does on a daily basis for me, with me, in support of me. This year, I can show up and walk and attempt not to get lost in the crowd.

I realize that the "one in eight" statistic pertains to a woman's risk of getting breast cancer during her lifetime. I've always comforted myself with the somewhat ludicrous thought that I have this force-field around me that will shield most of the people I love from being afflicted, since I've already taken the bullet. So far, it's worked. So far...

Then again, there's the woman from my office who I have befriended since her diagnosis. She's home this week recovering from her mastectomy, after enduring 6 rounds of A/C-Taxotere. There's the other unknown person that a co-worker said has been diagnosed but isn't ready to share the diagnosis with the world yet. There's the 34-year-old woman from YSC that I've corresponded with in regards to her training and fundraising for her first 3-Day in San Diego. She was just coming up on her first year after diagnosis, and instead of hearing good news, she found out her early-stage cancer with no node involvement is now metastatic. These people must have been outside the boundaries of my force field...

It's an interesting time of year... Breast Cancer Awareness.

I have seen paraphernalia in various places with the slogan
F*ck Awareness: Find a Cure.

Intrinsically, I don't disagree - there is absolutely nothing more important than finding a cure. A cure is vital. And truthfully, my eternally optimistic mind believes that it's feasible. I still believe in a world, one day, without breast cancer. I have to. But, we need that damn cure. Too many people have seen this beast take too many loved ones. Too many strong people have been incapacitated, either temporarily or long term. Unfortunately, it returns to haunt far too many people that had put it behind them - myself included. A cure is the ultimate goal.

The catch there is that a cure takes money. Research, development, clinical trials leading to the cure take tons and tons and buckets and truckloads of money. Without the bombardment of awareness that this breast cancer beast is such a problem, how the hell will we raise the money to fund the research to find the cure?

The people who have designed the F*ck Awareness: Find a Cure shirts aren't simply bitter, they are expressing their sentiments that awareness and early detection is great and all, but we need to reach beyond that. They are the ones, like me, for whom the awareness horse is already out of the barn and have become, like I have - experts on everything they never wanted to know. One woman told me,

"I want people to understand that my time is limited; I bite my fingernails nervously waiting for my treatments to fail me; I want to live to be 40, but I can't count on it. I think that merits an F-Bomb."
This is the same woman who has the following quote in her profile:

Frodo: I wish the ring had never come to me. I wish none of this had happened.
Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us.
It's not bitterness, it's frustration about the type of awareness that is needed and the fact that the term "awareness" doesn't necessary express what people REALLY need to be aware of - the fact that this is some serious shit. Not the people need to "know their bodies" early detection kind of awareness. I was detected early too. We need to spread the awareness that this is killing people. That it's not all pink and ribbons and pretty. I don't love that many people are aware of it only on a superficial level, and as much as the pink blenders, and ped-eggs, and toenail clippers, and ear hair trimmers make me cringe, they generate money. Maybe that is looking at it from a "sell out" perspective. I don't know. What I do know, is that I want that elusive cure, too. It's not about "saving the boobies", it's about saving the LIVES.

Komen for the Cure has a rally-cry of "I AM the cure!" It makes me cringe, and I'm sure I'll hear it Sunday.
I am not the cure. We're still waiting, and we need one.

I want to live to be 40, too. I'm counting on it. I realize how fortunate I am to be riding the wave right now. I'm all too aware that Stage IV, NED is an anomaly. I know that each scan could show that it's back. Many times it does deserve a whole string of F-bombs.

Dr. C ordered another quarterly scan. I suppose I had this idea that I would make it through until the end of the year without a scan and by default, be guaranteed to make it through both Thanksgiving and Christmas without any type of treatment, or treatment-related maladies. He wants to scan in November. Yes, I knew it was three months. I don't know why I thought maybe he'd let it slide. In the big picture? I'm grateful that he is so proactive with regards to scanning. In the small picture, just the inkling of a thought that I might not make it below the rim this year brought tears to my eyes. Realistically, I can't rely on the "what I don't know won't hurt me" concept in this case. So, when EVDI called, I scheduled the exam. Ironically, I'll find out the results after returning from the 3-Day. Greg has already promised me that we'll just find out even sooner that I'm still healthy. He was right the last time...

"I'm proud to be your doctor."
We actually heard that the other day. How many times does a patient hear that? Dr. C isn't one to blow smoke though - for the eight years I've known him, he never has been one to sugar-coat much of anything. I forget, sometimes, that my continued "remarkable" response is a victory for him, too. I can't imagine, as an oncologist, how difficult it must be to have to face patients upon patients and have to tell them that whatever the cocktail they had been taking simply isn't working anymore. I hope to be his ray of hope in an often dark world for as long as possible.

I'm still going to taste Thanksgiving. I'm still going below the rim. I'm still going to savor our bottle of Paul Hobbs on Christmas Eve. From what I hear, it's simply NOT up for discussion.