Yes, and

Did you know that by the age of 85 (if you’re lucky enough to live that long), the odds of getting Alzheimer’s are shockingly high? Statistics say that one out of every TWO people will hit the jackpot.   Whoa. Say WHAT?!

Until last night, I’d assumed odds were very slim of being diagnosed with this insidious disease if there was no prior family history.  But then again, if I’d taken the time to actually THINK about it, I’d surely have known better. (Right? Surely I would have, right?!?)

Because, back in the BC (read: Before Cancer) days, I also thought the odds of ever getting breast cancer, with no prior family history, were  very slim. Turns out that was complete baloney.

Last evening hubby and I attended our monthly lecture series and the speaker was Dr. Lisa Genova. I have to admit, I had no clue who she was until I read the brief bio about her in the series brochure. So, assuming you don’t know who she is either, I’ll tell you.

She’s the neuroscientist (Ph.D. from Harvard, no less) who wrote the book ‘Still Alice’. It’s a novel about a woman in her early 50’s, who has a full and busy life until she gets upended by a diagnosis of early onset Alzheimer’s.

Dr. Genova’s manuscript was initially rejected by dozens of agents. (I think she said close to 100). The general consensus, if it wasn’t a standard reject letter of 2 sentences, basically came down to: No one wants to read a depressing story about a woman with Alzheimer’s.

So she decided to self-publish and sold copies from the trunk of her car, for several years. Finally a personal connection offered her an introduction to speak with another book agent, who agreed to read the manuscript. Although the odds of wide publication were still dauntingly slim, he decided to take a flyer on it and find a publisher.

The rest is history…a best-seller, ‘Still Alice’ was translated into 37 languages, and a few years later it became an Academy Award winning film.

Not only was Dr. Genova’s lecture last evening about Alzheimer’s Disease educational and highly enlightening, it was also engaging in the most unexpected ways.   The audience was captivated for the full hour. Afterwards, the 30 minute Q & A left us all with much to think about and personally I was so impressed with her innate ability to not only convey complex science to a broad audience in a way that was easy to follow, but to also ensure we were fully engaged with what she presented.

We learned that Alzheimer’s begins in the hippocampus area of the brain, where emotions are regulated, particularly memory. Slowly over the course of several years, the disease atrophies the hippocampus, stealing memories both old and new. Because it can take years for Alzheimer’s symptoms to surface, it’s rarely detected prior to the changes in memory behavior that become noticeably unusual.

At very late stages of the disease patients will have lost the ability to swallow, because their memory of even the most basic functions are wiped out.

Dr. Genova decided to write a novel about Alzheimer’s after watching her beloved grandmother rapidly decline with the disease. Frustrated over lack of understanding, she decided to delve into heavy research. Rather than pursue the science of it, she went after the reality of it…the human experience.

Having sympathy for someone does not bring you enlightenment or understanding, even if you think you can relate in some way. And quite often, when it comes to Alzheimer’s (and this applies to late stage cancer as well), a stigma comes along with it. Alzheimer’s (and cancer) are scary subjects. People are afraid of what they don’t understand, so rather than truly engaging with someone diagnosed with a terminal illness, they tend to back away. They express sympathy, but don’t have the empathy to step up and truly engage in a meaningful way.

Dr. Genova spent 18 months speaking with dozens of Alzheimer’s patients, and maintained ongoing conversations with them as their disease progressed. During that time, she began to write the novel ‘Still Alice’ (at Starbucks!) with the intent of shedding much needed light on a difficult subject matter.

By creating a fictional character to personally narrate their own story and the ensuing odyssey of coping with initially subtle symptoms of confusion, then more advanced symptoms that became impossible to ignore, the character she creates brings us along to hear the stunning diagnosis of early onset Alzheimer’s, and the aftermath of it’s impact on those she loves the most; her family.

Dr. Cordova envelops the reader as she exposes them to the shocking realities of what it truly means to become diagnosed with Alzheimer’s Disease. Decline of the mind can be slow, but it’s always relentless as it continues to march towards ultimate death.

Though advanced stage Alzheimer patients will lose the ability to recall the names of their loved ones, and often revert to their earliest childhood memories until those too vanish, it is important to remember that they can still experience emotion such as joy, sadness, anger and even love.

Sadly, it’s not uncommon for people to walk away from their own family members who’ve been diagnosed with Alzheimer’s. It’s scary, so they back away from what they don’t understand.

“My mom has no clue who I am anyhow. She keeps telling me she’s waiting for her mommy to pick her up from school. I had to tell her, ‘Your mother has been dead for 50 years! She’s not coming for you.’  So, I just stopped going to visit, it’s pointless.”

But, is it?

The next key talking point of the lecture was a concept that Dr. Genova calls: Yes, and

It’s actually pretty simple.     It’s not about you!  So instead of finding fault or correcting what they’ve said, try saying “Yes and…

Yes and while we wait for your mommy, shall we have a cup of tea together?” This was the very example Dr. Genova used.  Just play along.  Step into their reality and experience the emotions with them.  Even if you disagree, the dialogue can continue rather than end in a frustrating disconnect.  When you experience someone else’s reality,  you can actually gain empathy and that in turn brings compassion.

Yes and can apply to every situation in life.  Every single one.  It’s how we find common ground.

So, I’ve been thinking today about all the many things folks have said to me over the past almost five years…in their effort to be supportive of my own health situation. One of the most memorable comments made to me was when a woman who used to work with me blurted out one day that “coffee enemas can “cure” your cancer.”

I looked at her with probably a bit too much intensity before I finally said “And you know this how?”

Turns out her sister was “cured” using coffee enemas, which she began after completing chemo and radiation first for her early stage breast cancer.  In hindsight, I now realize what I should have said:

Yes, and did you know that if you brew a fresh cup of Folgers, pour it into your left ear canal, it will trick your brain into thinking you’re a kangaroo in the Australian Outback?”

*for those readers taking offense to this notion that coffee enema’s don’t in fact cure cancer, I suggest you just keep on doing your own enemas. Seriously, whatever floats your boat. Go for it!

So, what’s The GOOD News when it comes to Alzheimer’s? The gene risk: whether you carry a genetic component for Alzheimer’s or even if your parents both are/were gene carriers, this is not a guarantee you’ll in fact develop Alzheimer’s yourself.

There are in fact some things we can all do to lower our risk of Alzheimer’s (aside from making sure we die before we’re 85).

  • Stay away from alcohol and smoking (do I sound like your mother?) Both are known risks for Alzheimer’s. Both literally reduce the health of your brain, not to mention the rest of your body at large.
  • Stay cardio fit.
  • Mediterranean diets are apparently proven helpful to reduce risk of Alzheimer’s. Who knew? or…did I…… just forget?

But if you just can’t manage any of those things…there’s still a glimmer of hope.

  • Learn NEW things. Because the brain benefits from learning NEW things. Here’s some examples we were given:
    • learn a new language,
    • learn a new sport,
    • read a new book,
    • see a new movie,
    • take up a new hobby,
    • go on a new adventure.

All these new things help to restore some critically important brain cells that might have otherwise been lost for good to Alzheimer’s.

STOP DOING CROSSWORD PUZZLES! You are recalling things you already know. So just stop it, okay?

So, I came home last night and thought about my own life.

  • I quit those silly crossword puzzles long ago when I realized I had no idea who the Hollywood hotshots were anymore,
  • I’ve taken up a new hobby (watercolor and acrylics) that I am enjoying,
  • I’m reading books of fiction and memoirs regularly,
  • I’ve brought a German Shepherd into my home that simply needed consistent and clear direction (so that’s basically an ongoing devotional between this dog and her adoring humans), and
  • I’m balancing my busy work life while also managing my never-ending schedule of cancer care. In that department, I have carved out time to become a volunteer for a wonderful organization in NYC called SHARE…they educate and empower women affected by breast or ovarian cancer by providing a multitude of support services.

Just this past week, a client remarked how well I looked, and she followed that up with “you must be doing really well.” I couldn’t think fast enough, so I simply smiled appreciatively and re-engaged with the task at hand, which was showing her the monthly financial reports.

But in hindsight, I should have replied with “Yes and thank you!”

Because I am doing really well. Godzilla and Portia both have my back. I’m blessed to have an oncologist who is in dogged pursuit of a breakthrough for Metastatic Breast Cancer. Do I understand the actual realities of this disease? Yes, and although I am living with them every day, I am still just so very grateful to still be living in the here and now.

Blessings to you all, dear friends.  xo

#LiveTheDash

 

 

 

Trick or Treat?

Thank God October is almost over. If you believe all the media hype coming from those pink campaigns, you’d be convinced that in this day and age no one dies from breast cancer anymore…unless they simply didn’t take care of themselves. Sure, they lose their hair, they get chemo and radiation and then… they re-emerge from the darkness to live full and long lives.

These campaigns spotlight survivors everywhere, celebrating the end of their “cancer journeys”… living their lives with relief that they had “the strength and personal empowerment to beat cancer!”

That’s all complete crap.

Because the fact of the matter is, no one dies from breast cancer. They die from METASTATIC BREAST CANCER. And all those jubilant survivors? Thirty percent of them, no matter how clean they’ve lived their lives, thirty percent of them will be diagnosed again, maybe just months or maybe years later, with stage 4…metastatic breast cancer.

This cancer doesn’t care how old you are, what the color of your skin is, what language you speak, or what country you were born in, and it doesn’t care about the foods you eat (or don’t). It doesn’t care what gender or religion you are.

It doesn’t discriminate. Period. NO ONE is immune from getting breast cancer or even metastatic breast cancer. It’s all a complete crap shoot.

The five year survival rate of metastatic breast cancer? Just 22%. You don’t need to be a math whiz to know those odds stink.

Can YOU imagine? What would you change in your life if you were handed that diagnosis? Would you cut through the noise to insist on hearing the narrative?

Would you decide who does and does not bring joy to your life? Would you choose to take on new hobbies as you watch the old hobbies take a back seat to your disease? Would you be willing to take daily chemo pills and/or attach yourself to an IV every three weeks, like clockwork, that drips cancer-fighting drugs into your body in an effort to stop the charge of an insidious disease…the same disease that garners a paltry 7% of all dollars raised in an effort to ‘find the cure’? Nancy Pelosi would call that “breadcrumbs”. Of all the billions of dollars raised, funding towards research to find a cure for the only stage of breast cancer that kills gets measly breadcrumbs. Sounds like a very cruel trick to me…but well, hey.

Tomorrow I meet with my oncologist to discuss results of my recent scans. A nurse told me the scans looked great…BUT.   It seems there was something new… ground glass, seen on one of the CTs.

Huh? Is this a TRICK?  Ground glass isn’t a medical term I’m familiar with and although Google tells me what it often refers to, I’d like confirmation from my oncologist that, in my particular case, it’s nothing cancer-related.  It may in fact only be the ghost of my nagging cough that struggles to go away due to damage left in my lungs by radiation.

Yet, it still sort of feels like a TRICK…but I’m hoping not. Because I really want to do that happy dance…but not until I hear my doc declare that I’m STILL STABLE.

Please oh please oh please.   My TREAT? Godzilla #55 will be tee’d up for me tomorrow. #BringIt

Who Knows Best?

So today, while Godzilla was kicking cancers ass, the woman in the chemo chair next to mine decided that she, not her oncologist, was better informed on the manner in which to treat her severe dehydration. Her nausea was bad, and she was complaining about her inability to stay hydrated. Apparently, she then tried to light up a joint (privacy curtain was pulled between us, I couldn’t see her) and when the nurse told her she couldn’t light up on hospital property, she went on this rant about how UCSF is in the dark ages and that her doctors in Alaska (!) know far more about how to treat cancer than the clueless f-ing doctors here at UC f-ing SF. And with that, she dialed her “bro” from her cell phone, told him to come back for her. “I am NOT wasting a full f-ing hour here getting NOTHING but saline!” she barked into the phone. The nurse offered to call her oncologist right on the spot. That woman was already out of the chair, and preparing to head directly out the door.
I couldn’t help myself…I leaned forward and peered around the privacy curtain. I’d assumed this was a younger woman, but nope…she looked about like me, but with no hair and sporting a rad chemo beanie. Probably made in Alaska. Her face looked so drawn and fatigued, I couldn’t be sure but I’m guessing she’s not early stage. But either way, I’d say her emotional rope, whatever remains of it, was quite thin.
Ya can’t make this stuff up….and that movie line just keeps on playing over and over again in my head. You know the one. “Help ME help YOU.    HELP ME….HELP Y O U !!!”
That woman’s got a rough rodeo in front of her. Hope she’s got some good strong weed…she’s gonna need it.

Soooo… Godzilla #51 is in the books. Wonder what #52 will be like. I’ve got three weeks to ponder the possibilities.

Efficacy: It’s the Elephant in the Room

I’ve never been a risk taker by nature. I’ve always preferred to play it safe (maybe to the extreme), but I do know my limitations and what my personal triggers are for debilitating fear. Even hubby can attest to that. Decades ago, hubby and I were skiing at Beaver Creek in Colorado. It was quite new at the time, so the terrain was unfamiliar to us. Much of it most of it was more challenging than I’d normally ski.

We were on the slopes early that day. Although we did stop briefly for lunch, by mid afternoon I could feel the fatigue coming on. And as all skiers (and snowboarders) know, it’s never good to ski when fatigued. That’s when stupid shit happens.

Hubby, on the other hand, is like the Energizer Bunny. He only stops skiing when the chair lifts stop running. So at 2:30, he still had another hour and a half before he’d be forced to pack it in.

We pulled out the trail map and examined it together.

“You want the fastest way down or the easiest way down?” I was surprised he had to ask. But for an instant I actually did consider both options. The fastest way down was incredibly appealing.

“I want the easiest way down.” Okay then.

He studied the map for another moment and then pointed out which trails I had to get to that would lead me to the easier stuff…and ultimately to the lure of hot-spiced wine and comfortable chairs. He pointed to a cut-off run that was important not to miss. I pulled off my sunglasses and looked at the map carefully to be sure I knew where it was. Then he folded the map back up and handed it to me. I stuffed it into my pocket.

“You think you got it okay?” he asked.

Yup, I got it. And I couldn’t wait to unbuckle my ski boots and free up my feet. We hugged it out and parted ways. Adios, Jean Claude! (For you young ‘uns, Jean Claude Killy was a French World Cup Alpine Ski Racer, and hubby had skills so far beyond my own that I got in the habit of calling him Jean Claude on the slopes).

Skiing solo now, I cruised along in fine form being careful to follow the route we’d mapped out. I got to the cut off area, clearly marked, and proceeded. Within two minutes or so, I noticed that this slope was getting steeper and substantially more challenging. Down below it was a lot more narrow. I tried to slow my rhythmic pace, not wanting to gain any more speed than I already had.

I could feel the first subtle signs of uncertainty, the feeling of being in over my head. My heart began to thump louder, my legs began to feel clumsy and weak. I decided to stop and ‘regroup’ (read: get my shit together). The one skill I’d gotten really good at was halting.

Smack dab in the middle of this unexpectedly steep run, I adjusted my sunglasses to look for a better line, thinking maybe I should just traverse more…but I don’t really like traversing …its hard to find any rhythm that way. So I looked down slope. I could see there was a left turn down there, where it would take me to the easy stuff. I’d noticed it on the map, but didn’t expect it to be more than an easy swing to the left, where the trail cut through the trees to dump me out onto an easier run…the easier way down.

Shadows were beginning to get really long, so I removed my sunglasses to really study that turn.

Damn it. It was actually a stiff 90 degree bend. The steep approach made me extremely nervous. I’m not the sharpest crayon in the box, but I am smart enough to know that if I picked up too much speed and couldn’t make that hard turn…then I’d be going right off the edge to the great beyond. Earth literally ended there. Nothing but sky beyond that edge. No tree tops, no nothing.

My heart began to race like a drunken jackrabbit. I pulled the map back out, and opened it up. What a waste of time that was. So instead I assessed the steepness of the slope that was behind me, the stuff I’d already skied. Good grief…stop being such a baby! You’ve already skied down THAT for Gods sake!

I surely had options, so I began to go through them. I pondered taking my skis off, but dismissed the idea because of the steepness of the slope. Knowing me, I’d trip over my own ski boots and fall anyhow. Then I’d for sure tumble all the way down there and right off that cliff into the vast expanse of nothingness. I decided taking my skis off wasn’t wise.

So I stood frozen, chastising myself. Just get on with it already! Do it! Go! Damn it, GO!

No no no no no! I’ll gain too much speed! What if I won’t be able to slow it down? I literally could ski RIGHT OFF THAT CLIFF! (Mind you, I had just recently watched the movie ‘On the Other Side of the Mountain’. It was very fresh in my mind. It’s the true story about Jill Kinmont, the National Women’s Slalom Champion ski racer. If you love to ski but haven’t seen this movie…don’t. JUST DON’T, okay?)

So I did what any smart woman would do. I went with Option B: I sat down.

I listened hard for sounds of any other human activity. Couldn’t hear much beyond the pounding of my own heart. I mumbled to myself, berated myself, and inhaled the mountain air deeply. Then I heard…well, nothing. Nada. Silence, except for the sound of the chilly wind whispering through the pines. Clearly, there were no skiers coming down this run. Apparently everyone but ME knew to stay off this lousy slope.

My mind wandered for a while, wondering if I’d left out any other options in my thinking. I felt a chill. I glanced at my watch. 3:45. JEEZ….I’d been sitting there for… what? Almost an hour? Daylight was running out. I could see a chairlift way off in the distance, through the tops of those pine trees. I caught glimpses of riders, though there weren’t a whole lot. And it was far enough away that I couldn’t hear their voices. So I continued to sit.

The long sunlit shadows quickly disappeared completely giving way to the approach of winters early twilight. I looked at the sky. Clouds were bunching up, and I wondered about the moon. Soon it would be dark. Seriously dark. And I actually thought to myself this bizarre notion: Well, I guess they’ll dig me out at spring thaw.

 I glanced again at that chair lift. No more riders. The chairs weren’t even moving now. I wondered if hubby would be the one to alert ski patrol, and how long it would take him to realize I’d never made it off the mountain. Would they send up snow cats with huge headlights to find me before I froze to death?

It’s an extremely thin line between insanely idiotic and absolute stupidity. On that particular day, insanely idiotic clearly got the best of me, but absolute stupidity got some pretty good shots in as well. I knew time was running out. And I began having conversations with myself. Just suck it up and DO IT! DO IT! STAND UP AND JUST DO IT!

I was so startled by a whoosh above me, that I twisted around in a panic to see what or who it was. OMG! It’s Jean Claude!

He came to an impressively abrupt halt, just inches above my head, spraying snow all over me.  He’d been clearly startled to see me sitting there. With a very red face he yelled “What the HELL are you doing here?! I made note that he was not concerned for my safety…no ‘Oh Honey!!! Are you okay?’ I guess he knew my look for debilitating fear better than I’d realized.

So I replied (not so nicely): “What the hell do you THINK I am doing?!” And I pointed angrily towards the steep stretch below where that cliff was waiting to hurl me over the edge. For clarity, I yelled the obvious; “THAT CANNOT POSSIBLY BE THE EASIEST WAY DOWN!”

He was a bit slow on the uptake that day, but the tears slipping down my frozen cheeks must have clued him in. His voice was a tad kinder when he asked if I’d been sitting in the middle of the slope the entire time.    DUH.      I had no words…only the emotion of someone balanced precariously between the insanely idiotic and the real desperation of absurd stupidity.  To his credit, he said nothing further, but suddenly skied around me and stopped about 10 feet below. At first I thought he was ditching his lunatic wife. But, nope. He turned his skis horizontally and turned his upper body towards me, then extended his ski pole like a fencing sword.

“Grab on,” he said calmly.

Huh?

Just do it!’ he said in a voice that sounded somewhat miffed, but probably wasn’t really meant that way…maybe it was meant to be more like; oh for crying out loud!

So I grabbed on, and he skied (are you ready for this?) HE SKIED BACKWARDS down this shitty steep slope while towing me…a petrified little baby. I knew then that I was safe. Jean Claude had come to my rescue.

As he towed me closer to where I could clearly see the hard turn we’d have to make, I released his pole and whizzed right on past him. “Thank you!” I yelled out, my voice still choked in emotion. I careened around that ominous turn to the catwalk trail and took only a brief glance at the cliff I might have gone over. It wasn’t quite the drop off I’d envisioned…but it wasn’t a slope I’d have had the nerve to try except in my dreams.

We skied the narrow trail through the trees for a short distance and suddenly it opened up to a wide expanse of much kinder terrain. I literally FLEW from there, all the way down to the bottom, barely beating Jean Claude to the finish (he’d slowed it down to keep track of Miss Paranoid).

Later, when I asked Jean Claude how he’d ended up on that very same run himself, he told me he’d simply wanted to see what those slopes were really like that he’d mapped out for me.

…So, I told you about that day because it illustrates what was probably my finest example of debilitating fear. Debilitating fear is exhausting, like running on a hamster wheel. The more you run, the more worked up you get. And it’s irrational. You can’t get off the wheel until you stop running. Which brings me to this…sometimes in life, there simply are no easy ways to jump off the hamster wheel. Our choices will always have consequences, but until we actually act upon our decisions, we can’t know with any real certainty what the result will yield.

When it comes to my health, living with an aggressive form of metastatic cancer, there’s no standard of care, not really…because the science of cancer is different in each one of us, given our own unique DNA and cellular structure. Drugs that work for some don’t work for others, even with the exact same pathology results. Cancer continues to be truly the ‘Emperor of All Maladies’ (boy, how fine a title was that for the book that details the history of cancer?)

These past almost 12 months, I’ve not been writing much. I’ve thought about it…wondering how to express what’s really going on in my heart and in my head. But it’s been rather a rough time emotionally, with the unexpected twists in life, which included the unexpected death of a longtime friend close to my heart, as well as the passing of our beloved dog, Charlie.

Distracted by a sadness that I cannot adequately articulate, I simply walked away from the writing for a while. But people have been asking. How am I doing? Are my treatments finally over? I’m looking well, so it makes sense that they’d assume the worst is behind me. I wish it were true. But that’s just not the case with metastatic breast cancer. It’s never going to be behind me, until all treatments stop working and I transition to whatever is in front of me, in the great beyond.

The good news is: last scans in February showed that my cancer hasn’t spread beyond where it already dwells. I continue to get chemo every three weeks, and I get scans as well as an echo-cardiogram every three months. I get blood draws one hour prior to my chemo infusions checking to be sure my counts are not dangerously low (or high), and they also monitor my liver enzymes closely to be sure my liver function isn’t suffering. (Godzilla can cause liver failure and it’s cardio-toxic as well). Because of yet another oral chemo I’ve been on for these past two years, my bone density has been compromised. So now my bones are at high risk for fracture.

My oncologist has ordered bone-strengthening injections that I’d get just twice a year. Potential and most worrisome side effect of these injections is something known as jawbone necrosis (yup, it’s as bad as it sounds). However, my insurance denied approval for the injections. My oncologist has appealed their decision to deny this drug, and is insistent she will in fact get their approval. So presumably I’ll be getting this injection at some time in the not too distant future, unless Obamacare refuses to accept the treatment advice from my oncologist, one of the leading research oncologists in the country at one of the top ten cancer research centers in the nation.

In the meantime, I was advised to get any pending dental work done before they start with the injections. Because, well…we sure don’t want my jawbone to die off before I do.

Side affects from Godzilla have slowly been building in their intensity over recent months, and have begun to take a toll on my quality of life. I discussed this with my oncologist. We spoke about the options to alleviate some of these side effects, the worst of which is peripheral neuropathy in my feet and hands. I can’t walk the distance of a nine hole round of golf, I can’t grip the club head with much strength, and my tingling achy fingers tend to stiffen up so much, I can’t unbend them without using my other hand to do so. These symptoms distract me now at work as well.

She suggested a prescription drug called Gabapentin, known to be very helpful for neuropathy, but it’s one of those that I’ve seen advertised on TV with a litany of potential side effect warnings that include “THOUGHTS OF SUICIDE OR EVEN DEATH”.

Ummm, NO thank you. Why would I take a drug to alleviate side effects that would simply add more side effects of its own? We also discussed skipping one round of chemo (my idea). I figured six weeks between infusions instead of three weeks would be like a gift to myself. I could enjoy some relief and maybe one or two rounds of golf, or just a good long walk. Then I’d return to the party.

My oncologist looked at me as if assessing whether or not I was insanely idiotic or just incredibly stupid. “These drugs are keeping you alive! So why wouldn’t you take the Gabapentin to manage side effects? If that doesn’t work, we just stop and look for another alternative.”

The idea of one more drug in my body is so unappealing to me. And she must have noticed my hesitation to respond. So she then suggested a reduced dosage of Godzilla, but just for two or three rounds, to see if there was any difference in my side effects. “BUT”, she declared, “We don’t know what the efficacy will be. Right?” (As in: comprende?)

So.  Efficacy. That’s a word I don’t hear real often.

“Let’s reduce the dosage 20% and see how that works”, she continued. “Then, after just two rounds you let me know if you get any relief, and if not we’ll crank it back up to full dosage.”

I negotiated for only a 10% reduction, but she didn’t think that would be enough for any favorable relief. So forty minutes later, Portia got plugged in and Godzilla got hooked up…at 80% of my usual dosage. But still the nurse took full precautions. She broke out her long protective coat, face mask, and gloves before handling the bag of liquid drugs; no one wants Godzilla exposure. Seeing the nurse in this attire is a constant reminder that in order for me to live in the here and now, it comes at a price… not just to me, but to my caregivers as well. These people are truly angels on this earth.

The very next morning after my infusion, I woke up quite surprised that the neuropathy in my hands was noticeably improved. None of my fingers felt stiff. Same in my feet…the feeling of swelling, burning sensation and tingling had definitely improved.

So, now I can actually walk greater distances with less pain, and I can actually knit without my finger joints stiffening up to the point where I have to use my other hand to unbend the fingers into neutral position once again. (It’s quite bizarre, really). I no longer get distracted at work with my feet or my hands. But it has come with a price.

After two weeks of enjoying this newfound relief, I emailed my oncologist because I’ve literally been losing sleep over this efficacy thing. “Good news!” I wrote. “Noticeable improvement! But I’ve been thinking about what you said about not knowing the efficacy of this reduced dosage. So I would like to crank it back up to full dosage next week and just try the Gabapentin instead.”

 Within minutes, she replied. “Very glad to hear about the improvement in your neuropathy. I would recommend that we stay at this dose for the next two or three cycles. Then we can go back up and see if the neuropathy comes back. Sound reasonable?

Life is just so unpredictable.

My next round of tests and scans is in six days. I’m trying not to think about it, because the efficacy of this reduced dosage will be revealed within the results of these tests. But I am proud to say I am certainly not frozen in fear, because knowledge is POWER. And there is no finer truth than the knowledge that life is just incredibly unpredictable. Anything can happen. To anyone. At anytime.

I have Jean Claude by my side. The road ahead may be limited in its distance to my final destination, but the timeline I’m on is my own. I’m not interested in the fastest way forward, or even the easiest way forward. I’m just navigating the slopes as best I can. And if I have to take a breather to regroup, without apology I will sit right down until I know for certain that I can navigate that next turn on my own terms.

#gonebutnotforgotten #livethedash

What Call?

Balance. It’s critical to so much in life.

Early in May, I had another round of tests and scans, all in one very long day. I had an echocardiogram to see if my chemo (Godzilla), has negatively affected my heart since it is cardiotoxic. Then I had a PET scan, followed by a CT scan.

I had to advocate for myself in order to get those scans, because my oncologist preferred to make the assumption that I’m ‘stable’. She wanted to simply continue with Godzilla infusions every three weeks and change nothing until I ‘feel symptoms’. Huh?

“So, how will you monitor me without scans? How will we know if cancer is progressing or not? You want to wait until I can’t breathe? Until I begin to cough? Or feel crushing bone pain?” I tried hard not to sound stunned, but even more than that, I tried hard not to sound pissed.

She’d be monitoring my tumor markers instead, she told me. You mean the blood tests that have consistently shown that my tumor markers are all within normal range? THOSE tumor markers? ….seriously?

I got a shoulder shrug and a demure smile in response. I glanced at my husband. He was as baffled as I was. BUT…I’m quite sure she’s the smartest in the room when it comes to cancer.

As if she was new to my case, I reviewed it with her. I’ve never felt symptoms in all this time, aside from the side effects of chemo. From the beginning I’d been getting scans every three months, as is protocol for active stage four cancer. And scans are the only way to find out if my cancer has actually progressed. I know this as fact, because late last year my PET scan showed ‘extensive progression of disease’…and she promptly upended my entire treatment plan. Godzilla was brought in to replace those two sniper drugs I’d been getting.

So, do I want to wait around now until cancer pain rears its ugly head? That would be a resounding NO. But my oncologist reiterated that I should just wait and see, as she would not be ordering scans.

I stewed for two weeks over it. Then at my scheduled appointment with an oncology nurse, I pressed her about it. “Isn’t it time I get scanned again?”   She glanced at her computer screen and immediately said “Yes! It’s been over four months. I’ll get the scans ordered for you.”

I told her what the doctor had told me…about holding off on scans until I had physical symptoms of cancer. Bless her heart, she didn’t hesitate and said she’d put a call in to the doctor herself and get them ordered. MY HERO! And, true to her word, the following week I had my scans. All in one day.

But the last thing I was expecting was a call the very morning AFTER my scans. Caller ID displayed the number of my oncologist’s office. Odd, I thought. I never get results this fast.

But the voice wasn’t the voice of my oncologist or any of her staff. It was a voice only vaguely familiar to me. He identified himself as one of the partners in her office, explaining that he was calling to deliver my test results since she was away for the week. Whoa, I thought. Results so soon?

His voice was somber and flat. I could picture him. I knew him only by sight, sometimes he passed through the reception room, unsmiling, unfriendly. But I wasn’t his patient, so what did I care?

He got right to it. drawing out the first syllable for emphasis apparently.   “Unnnnfortunately…”

WHAT THE HELL KIND OF WAY IS THAT TO START A CONVERSATION WITH A STAGE 4 CANCER PATIENT YOU DON’T EVEN KNOW?

It went downhill from there. For me anyhow. The conversation was short and awkward, primarily because I immediately retreated inside my own head. I really strained to stay ‘present’…in an effort to hear him out. But I was already in some far distant place, so my ears and his words weren’t exactly compatible for optimal effectiveness. But I did catch his last sentence clearly…the one about my own doctor returning next week and likely having other drugs to try. His delivery tone wasn’t any more upbeat with that news either, unnnnnfortunately.

For the first time in my life, I thought I might actually hyperventilate. And I knew I had to make a really quick decision. Fall completely apart or find my balance.

Easy choice for me.

Hubby was getting ready for his day, so while he was turned away from me, I angrily blurted the test results. Immediately he stepped close to wrap me in his strong arms, and I could see the sheer pain or maybe fear in his eyes….but I stepped away. I just couldn’t. If I let him get those arms around me, the tears would be an absolute flood and impossible to stop…clearly for both of us.

So, I did the only thing I knew to do. I simply chose to pretend I never got that call. (What call?)

I marched into my day, getting ready to leave for work with record speed. I walked out the door within minutes, and pulled away from the house. What call?

I cranked up the radio determined to stop thinking about anything at all. I let the music just carry me away. And then it became suddenly talk radio. They were discussing the idiots who pay upwards of $29,000 for some other idiot to pick out the perfect baby name. The radio folks had my undivided attention. I kid you not. It’s really no joke: http://www.goodhousekeeping.com/life/news/a37971/professional-baby-namers/

The next thing I knew I was parking my car almost 20 miles from home. No recollection of how heavy the highway rush hour traffic was or wasn’t. All I know is I found myself pulling into that familiar parking spot some forty five minutes later. A tear suddenly escaped as I thought of my hubby, left to fend with this news on his own. But truly, I just couldn’t go there and realized only then that I probably shouldn’t have said anything at all to him. But, too late.

It was a very busy and full day at work. I was completely absorbed in financial software, spreadsheets and bank statements. It could not have been more perfect. And by the time I left the office to return to my car, I felt almost like a normal person, still thinking about those complete imbeciles who pay over $29,000 for some complete stranger to come up with the perfect baby name. Damnit. Why didn’t I think of that?

My next scheduled appointment with my oncologist was still ten days away. I thought that maybe she’d call me, just to go over the results prior to my appointment. (But nope… that didn’t happen).

So I became immersed in the evening hours of the subsequent passing days by doing my own research on chemo options and drug combinations. On clinical trials. On revolutionary medical equipment and technology. On cancer research institutions around the country seeking out the best of the best. Turns out two of the top ten are right in my own backyard.

Now, more than ever, it just seemed to be a good time to seek out another medical opinion. Get a second set of eyes on my case.

And I came up with two names, both highly skilled oncologists heavily involved with clinical trials specifically studying cancers like mine. One doctor at Stanford and one doctor at UCSF.

I alerted my amazing and wonderful Internist as to my intent. (She bird-dogs everything for me. There isn’t enough gratitude in the world for her).

I told her I’d reached out to the guy at Stanford first. (My daughter went to Stanford. I thought maybe that would play in my favor…LOL). The good news: I could get an appointment, but the earliest appointment I could get was six weeks out. The bad news: it would not be with the doctor I wanted to see. I’d only be able to see the one guy they have who offers consultations and second opinions for their cancer center. And if I’m going to see that guy, I may as well go to any guy at all. Because that guy is NOT the guy I specifically want to see. So, never mind.

Then I called UCSF. Turns out my internist had just greased the wheels for me there. I got an appointment the very next week with the very doctor I did want to see. And it was scheduled just a few days AFTER I’d be meeting with my own oncologist anyhow. Perfect.

I was a bit nervous going in. I already had the news but did she know I already had the news? And if she did, why the hell did she make me wait ten full days, KNOWING I had this crappy news? Would her tone be more encouraging than the other guy from her office who called me so early that morning?

Nope. She began with the exact same word: “Unfortunately…”

It’s very clear to me that there needs to be a refresher course for oncologists on how to deliver news no patient wants to hear. I have a few suggestions. How about this:

  • (in an upbeat tone of voice) So, your scan results are in! As I look at these, they give me a clearer picture of what our next steps should be. Not the results we’d hoped for, but not to worry! We have other options. OR
  • (in an upbeat tone of voice) well, it seems that Godzilla has taken a break on this round, so let’s try something different to see if we can’t improve things here. OR
  • (in an upbeat tone of voice) Here’s your results. Lets go over them together so I can explain what they reveal. It’s not doom and gloom time yet, but let’s discuss next options. OR
  • (in an upbeat tone of voice). So, talk to me. How are you feeling? (I reply that I’m feeling quite well, actually, all things considered). Well, that’s just incredible! You are one amazing study on how to just push forward with this nasty disease in tow. So let me tell you what the scans reveal so we can think about the best way to proceed here. And when we’re done, you and your husband should go enjoy a nice dinner with a glass of wine (just this once) to celebrate that you are doing so incredibly well, in spite of what this scan report says.

After a sobering discussion (but not all that wordy since she is a woman of very few words herself), I asked a ton of questions and offered thoughts of my own about next, or alternate, or additional drug options (“Now that’s intriguing…” she said after I mentioned one new drug in particular), she concluded that I should simply stay the course with Godzilla.

Didn’t see that coming. She said that although there’s progression of disease, it seems that Godzilla is still the best option at this time. Not too happy, I managed to convince her to add another drug as well, one of those sniper drugs I’d had last year…it had worked for 13 months before she traded it out.   Maybe Godzilla just needed one additional sniper on his team. “If I can get your insurance to cover it,” she replied.

Hubby sat up straight and leaned in. With the directness of a skilled senior level Manager of All Things Complicated, he asked if insurance played a role in her decision to not do scans.

Bingo. The elephant in the room suddenly appeared. Insurance companies dictate much of medicine today. They have the power to deny treatment, scans, whatevers. And clearly my doctor found that battling with my lovely Obamacare insurance wizards was quite stressful.

So, can you guess how that made me feel?

At the very end of the appointment, I told her I was getting another set of eyes on my case in the form of a consult at UCSF. If she was surprised, it was only momentarily. She said it’s always wise to seek another opinion. She also said UCSF offers many clinical trials that could be of use to me down the road (I already knew this from my hours and hours of research). We stood up to leave and as she came around her desk, I gave her a quick hug. Awkward for her…she’s not much of a people person…she’s more of a DOCTOR person, if you get my drift.

UCSF: We arrived a full hour early, because I wanted to be sure we could find parking. I knew Clinton was coming to San Francisco that day, and I had no idea where the event was, but I didn’t want to take any chances with parking. Hubby humored me and we left the house at 2 p.m. for a 4:30 p.m. appointment (stop snickering all you peeps who KNOW exactly how far we are from the city!)

All my medical records had been sent ahead of time, but I hand carried my pathology slides from 2014. I was fully armed…with two pages of carefully crafted and researched questions. Lots of them, very specific to my scan results, my pathology, even my options when ‘the end’ was well within sight.

Side note: No, I don’t dwell on dying. We’re all dying. You. Me. Those guys. Them. All of us. But as long as I pretty much know HOW I’ll be dying, I like to plan ahead. For my loved ones, I want it to be a calm peaceful experience, not a horrific or terrifying one. So yes. I needed to know what this doctor at this cancer research institution thinks about that too.

So, with four duplicate sets of questions, all collated and stapled neatly, I was more than well prepared. Since we’d arrived so early, I actually started to worry that I might become distracted completely just by sitting around mindlessly. I didn’t want to lose any focus on the purpose of this mission, so I debated about how to STAY focused with all this time on my hands.

We weren’t in the reception room five minutes, when my name was called. WOW! Getting here early paid off!

A nurse took all my vitals. Hubby came into the exam room with me, where I was told to get into an exam gown. Lovely. Then we waited for well over an hour before anyone else came in. I wondered why I had to be in an exam gown. JEEZUS. You can’t SEE it. But trust me. It’s there. PET and CT scans don’t lie. Wasn’t it obvious I have cancer? And who f-ing cares what my temperature is? I have stage 4 cancer! WHAT DIFFERENCE NOW DOES IT REALLY MAKE? (…wait, where have I heard that before?)

It was a very small, windowless and claustrophobic exam room. Hubby napped in an uncomfortable looking chair, while I took pictures of him and sent them via text to our daughter.

Look! Dad’s so bored he’s taking a nap! She worries about me from thousands of miles away.

I sat on the exam table, swinging my feet to and fro…until my back began to get tired, and then I moved over to the desk chair clearly reserved for the doctor, since it was perched in front of a desktop computer, with a monitor flashing instructions on how to detect a stroke, of all things.

Hubby continued to snore and I listened intently for sounds from the outside world. For a big medical center, it seemed damned quiet out there, unless folks were skulking around silently. The door was closed, so I couldn’t be sure. I glanced at my watch. 5:15. Just us and the janitors now. The clock kept ticking.

FINALLY…footsteps. Hubby snapped to attention.

Two people swept into the room with white coats and stethoscopes. A ‘Resident’ and a ‘Fellow’. (It’s a teaching hospital, after all). I vacated my seat in front of the computer. The Resident never uttered one word after her brief intro, but she quickly sat in a small side chair pushed back into the corner. From there she sat directly behind the Fellow who positioned herself at the computer. I went to climb up on the exam table, but was told to take a seat in the chair next to the desk. It was already piled high with my purse, my glass water bottle carefully propped within my clothes, and the file folder holding my multitude of questions along with additional sets to hand out. Oh…and the large puffy mailing envelope that held the pathology slides I was told to bring along (and had to pick up from yet another location in the city where pathology slides are apparently stored).  So I pushed it all off the chair and down to the floor. I took my seat beside the desk.

The Fellow was already clicking away on the computer, and she launched into my medical history. I kept staring at her hands…she typed faster than the speed of light. I’ve never seen anyone type that fast…with any accuracy. It made me nervous. She typed like a crazy woman… even between questions which only required a YES or a NO answer. Wow. Typing. Just typing and typing and more typing. Clickety clickety clickety…

What the hell is she typing…a manuscript? I wondered. I leaned over and peered around to see what the computer monitor looked like…she had three different windows open…all side by side. Good grief. Seriously? Wish my vision was sharper…what the hell is she typing?

I’d spent ninety minutes myself just a few nights earlier, answering all the online health history questions that UCSF preregistration required before they’d confirm my appointment. And I can tell you, it did not require too much typing. Just going page by page by page…set up for those who never work on computers…with instructions like: When you completed this page, click here to proceed to the next question, or click here to return to the previous screen.

Clearly those ninety minutes were a complete waste of my time, I realize now. Because she’s still typing, typing, typing maybe reinventing the wheel.

Abruptly, she glanced up at me, smiled. Reminiscent of that scene in Meet The Parents, where Ben Stiller goes to the airport to fly home and the lady behind the ticket desk types endlessly without a word. Endlessly.

Finally, “Feel free to ask me any questions you might have.” Her fingers never slowed down. Clickety clickety clickety…

I told her I have lots of questions. I reached down for my folder and pulled out a copy for her. Her eyes got wide as she took a quick look. While still typing.

OMG…C’MON! WHAT THE HELL COULD YOU POSSIBLY BE TYPING?

I was on the verge of getting slap happy, so I blurted out instructions. “You can give these to the doctor, this copy is for her,” I said.   At long last, silence. She took a very quick glance at page one and then turned to page two. And handed the questions back to me. Well, then. She’d be sure to give them to the doctor ahead of time, but for now she wanted to examine me.

I hopped up on the table. She put on purple latex gloves (stylish) and her exam took about two minutes. Yup. Told ya. You can’t SEE the cancer. Or FEEL it. Just read the god damned scans, ok?

When she was done, she pulled off the latex and then voiced her opinion about my cancer in general, by starting off with; “In my experience…”, which, as everyone in the room knew, was quite limited. Her ‘experience’ told her that my pathology from 2014 was clearly showing a new primary cancer, not a recurrence of my 2003 cancer (there has been lots of speculation over that point.) And, this opinion of hers was based on the histology of the two pathology samples, which were very different from each other. The very different histologies are what brought her to the conclusion that it was not the same cancer from 2003 recurring again in 2014.

I didn’t question her at all. I was an obedient patient. BUT, my own research shows clearly that she was incorrect. There could be multiple lesions in one patient of the same type of cancer, and some of them might have different histologies. One lesion might have a gene mutation, the other not. One might be estrogen receptor positive, the other not. Yet both lesions are the same type of cancer (breast, lung, etc). So I quickly discounted her opinion, based on my own limited research experience. But I didn’t harbor any ill feelings towards her…this is a teaching institution after all.

She then stood and gave reassurance that the doctor would be coming soon. As she exited the room, I smiled at the mute Resident who followed her out. “I hope you’ve learned to type REALLY fast!” I said.   She busted a big smile, and in heavily accented English she said she was still in training.

Hubby and I were alone once again.

Another eternity ticked by. I reminded hubby to be ready to record the conversation with the doc. Before he’d nodded off on his nap earlier, I’d shown him the app on his iPhone that would allow him to do this (FYI: it’s in the Utilities folder, and called Voice Memo).

I figured our conversation with the doc had potential to get really science-y…and I might become like a deer in the headlights. I wanted the ability to go home and re-listen to her explanation/comments again and again… if need be.

It was sometime just after 6 p.m. when the doctor came in (followed only by the Fellow with Flying Fingers) and it was close to 7 p.m. when she left us. She had already reviewed my 2003 pathology report, in great detail and had compared it to my 2014 pathology report. I handed her my lab slides and she said she’d be sure to get them under a microscope for further assessment. And immediately, she expressed her opinion that my 2014 cancer is very VERY likely a recurrence of my 2003 cancer, which in her mind was ‘quite probably’ NOT assessed accurately to begin with, due to the testing methods they were using back in 2003.

Nowadays, testing techniques are vastly more sophisticated, and in today’s lab, that cancer from 2003 would likely be much more aligned with the histology of my 2014 slide, which had the unexpected gene mutation. So NO. This was not a new primary cancer. It was the same cancer from 2003 that was very early stage one, rearing it’s ugly head all these years later as stage four.

I slyly glanced over at Flying Fingers. You’ve still got a lot to learn, kiddo.

And then she immediately addressed my list of questions, starting at the very top. She spoke concisely, yet with depth and perspective I’d not ever heard. It was the best medical meeting I’ve ever had. She readily spoke about how she’d approach my treatment plan going forward and with specifics. She expressed a clear objective for me… to keep me asymptomatic for as long as possible with the best quality of life possible.

She actually concurs with staying on Kadcyla for the next several months, and without the other sniper drug I wanted. She said studies have already shown there is no benefit of those two drugs used in combo, only more side effects.

So, in summary, the scan results raised alarm bells. Yes, there is progression of disease. BUT she says the progression is actually miniscule! Love that word. MINISCULE. She explained to me that it’s NOT the amount of uptake of scan dye that is crucial (how much you light up). Because other things can cause that dye uptake, not just cancer.

It’s the GROWTH of the lesions or nodules that we care about. And those changes were

 MINISCULE!

Rush hour was long over by the time we left the city. We stopped for dinner on the way home, and I had a glass of wine. Enjoyed every last drop.

I have listened to that audio recording multiple times already, because the discussion indeed got very science-y. The part I am most happy about comes at the end, when I asked if she’d consider taking me into her fold at UCSF.   “I’ve learned more from you in forty five minutes, than I’ve learned in two years,” I told her. “I feel SO much…. LIGHTER.”

Friday I had my last chemo at CPMC and said goodbye to the lovely oncology nurses and staff there that welcomed me so warmly each and every time. And I left a handwritten letter for my oncologist explaining that I’d made the decision to transfer my care over to UCSF.

So my next chemo will be right on schedule (still every three weeks) without skipping a beat. BRING IT.   And I’ll be at one of the very best cancer research hospitals in the country. I just hope the unending parade of Residents and Fellows will take the time to type less and talk more. I’ve been assured that the doctor will in fact be monitoring my case closely…they’ve scheduled me to see her personally EACH and EVERY infusion day. And did I mention that she works closely with the guy at Stanford that I couldn’t even get in to see?   SCORE.

The prognosis doesn’t change…but the perspective sure does. And it just feels so much better.

Thanks for following along, for all your well wishes, notes and encouragement. I treasure each one.  For those who SEE me routinely, you know I’m doing well just living my life. One day at a time.

Don’t forget to #LiveTheDash

Spring Is In The Air And Gray Is In My Hair.

It’s been a struggle, looking in the mirror every morning wondering who that gray haired woman is that is staring right back at me. She looks, well…OLD.

I mean, I’m no spring chicken according to my driver’s license, but I simply want to look like I FEEL. Younger than my driver’s license, and still a relevant member of my generation in spite of the toxic cancer drugs they pump into me every three weeks. All this gray is nothing more than a bold reminder that I’m forever living with cancer.

So, after much angst and with the approval of my oncologist, I met with a hair color specialist. It didn’t help that she immediately told me that she loved my gray.

But I don’t feel like me, I told her. So she explained that with never ending toxic drugs, my hair has been through a lot.

No shit, Sherlock (I said to myself).

To clarify for those of you who don’t really understand: my hair died with chemo and rather promptly fell off my head, then with a change of chemo drugs some 4 months later, it slowly (very s l o w l y) re-appeared but with a different texture and a whole lot more gray than it’d left with. Apparently while on hiatus, my hair decided to return with more curl and more ‘maturity’.  And I’m just not a fan of being pushed through the aging process faster than what would be the normal progression without cancer in my life.

We chatted for thirty minutes, the specialist and I. I showed her pictures of my hair before it all fell out. It had some white, but it had way more blond. It didn’t make me look older than my driver’s license, and it made me feel like all my friends look: healthy. So, we discussed all the options. Not many of them, really…but as we spoke, it became clear that the best option was really the first option and the most obvious.

I made the appointment and I’m going to have that gray tweeked. Yup, I’m not going to make it go away, because that would be impossible. But I am going to trust in magic, and find me a look that enhances the best of the gray, yet diminishes the worst of it (the salt/pepper drabby ashy colored stuff…which there’s plenty of). Fingers crossed this magic doesn’t elude me. Toes crossed, eyes crossed…dead mango branches swinging from the awnings on a northeasterly rotation while the clock strikes six minutes after midnight. Whatever it takes…MAGIC. I want it.

I know this is a bold move on my part; regaining control of my hair. Honestly? I just want to move through my daily routine feeling like a better version of myself, and not some imposter staring back at me every single time I catch my image in the mirror.

Is that too much to ask? No. I think not.

#cancerschmancer

Riding Blind

The chamber is loaded and the hammer is cocked. The muzzle is aimed directly at me. I squeeze my eyes tight, waiting…waiting. I can hear the pounding of my own heartbeat and I can feel the blood coursing through my veins as I look within myself. I pray for the waiting to be over. Whether it’s a bullet or a blank, I just want them to get on with it. Deliver THE NEWS.

I grapple emotionally with the knowledge that whatever time remains for me, it is slipping away, and there is nothing I can do to recapture any of it. Not one single moment. JUST GIVE ME THE NEWS.

This is what it’s like for me. Russian Roulette. Every three months, each time I get a CT or a PET scan. I lose sleep at night wondering if it’s time to begin the big clean up…get rid of the tangible nonsense, so my kids and hubby don’t have to deal with it. I mean, what is there, really? I’m not a hoarder by any means, but I have hung onto things that have emotional significance to me, but to anyone else they’d simply wonder why the hell I was hanging on to that old thing. My closet is loaded with clothes I never wear, but they make me feel good looking at them. And then there’s letters and photos I’ve kept from decades ago…I already purged much of that. Dumped images of people that no one, aside from me, would know anything about.

Russian Roulette when you’re living with metastatic cancer goes like this:

If the news is good (say ‘stable’ or ‘remission’) when that trigger gets pulled, then it’s simply the sound of an empty chamber, a quiet click.  And I can breathe a huge sigh of relief while I shed a waterfall of joyful tears.

But if the news isn’t good, the gun goes off with a nasty blast, causing me to lose my emotional balance just momentarily as I absorb the shot. And it’s simply a matter of how lethal the shot really is…and did it hit a vital organ?

Positive attitude only takes you so far. You stay busy, upbeat, occupied, or just asleep…anything to keep your mind from wandering to a dark place. But no matter how well you’ve mastered that, it’s still a bit like riding blind.  You have good centered balance and navigate the turns well with strength of character and sheer faith, but you simply can’t prepare for what you can’t see.

And it’s so easy, SO EASY to get emotionally swept away by the incredibly comforting energy of positive thinking.   You begin to envision your celebratory victory lap as you now wait for the scan results to come in. But I know from experience, you can get completely blindsided by the proverbial gun when it in fact fires off a dreaded bullet.

Well, at long last…here’s THE NEWS (received 3 weeks ago…sorry, it took me some time to truly absorb it before I could publicly report it). This time around, all I heard was a simple click…the sound of a blank. The PET scan results confirmed that my cancer is stable. This means there is no change since the prior PET scan. Although my cancer is not in remission (the better outcome), it has not progressed any further. Godzilla is my new best friend, and I can breathe easier for another 12 weeks.

I’m STABLE.  I’ve said it out loud to hubby, to myself,  at random times.  The relief of that news was greater than I can adequately describe.

I’m back in the saddle and I’ve fully regained my balance.  Feeling so grateful.  So blessed.

#LiveTheDash

Letting Go

Last week I attended a luncheon hosted by author Leslie Johansen Nack who spoke about her newly published memoir ‘Fourteen’.

Having already downloaded her book to my Kindle, not only had I read it, but my mother and my husband had also read it. We all agree…it’s a gripping story. The title’s byline leads you to believe that ‘Fourteen’ is primarily a coming of age story, but I think that’s the least of it, quite honestly. Beginning well before she was a teenager, this is about the unfolding determination to find the wherewithal to conquer circumstances no young girl should have to face. Climaxing in 1975, aboard a sailboat with only her sisters and her bizarrely controlling and sexually menacing father aboard, this is a story about courage as well as survival as they navigate clear across the Pacific ocean, from San Diego to the French Polynesian Islands… and then back again. Whether or not you know anything at all about sailing, the journey of this family unfolds in a way that is meant for the big screen of a movie theater.

Although Leslie and I had become acquainted two years ago through an online class called ‘Write Your Memoir in Six Months’, we’d never met in person until last week. I know publishing wasn’t without an emotional toll, and I admire her all the more for her bravery to take it public. She’s been traveling around the country on a book tour, and I got the sense last week that although she is extremely appreciative of the solid reviews and favorable attention her book is getting, she feels uncomfortable speaking so openly about it in public.   Thus is the dilemma of writing memoir.

From the get go, I had no interest in publication for my own memoir. My interest to write had been purely to leave a documented explanation of family history, which was already complicated long before I was born. I wanted my children to understand the circumstances and complexities that shaped not just me, but in part how it also shaped them.

As I was approaching the home stretch I already knew I’d be ditching and re-writing most of it because that online class inadvertently taught me an invaluable lesson; writing to appease someone else changes the tenor of my narrative, which in turn caused me to lose my own voice. Now it’s my firm opinion that family therapists who are unable to stop analyzing every situation have no business teaching and mentoring writers who are navigating memoir.

I actually got quite close to finishing that shitty first draft of my memoir. But just a few weeks shy of that six-month finish, the reemergence of cancer abruptly brought a screeching halt to my memoir efforts and immediately redirected my priorities.

We all know that the seconds, minutes and hours of our lives don’t ever move in reverse, just like the sun never sets in the east. Statistics prove out that life is short when you’re living with stage IV cancer.

For me, the only way to move forward is to simply let go. Hanging on only to look back serves no purpose. Whatever the future holds, I’ve let go of what was, and I live with what is. Because the ‘here and now’ is my future.

Godzilla Meets Adele

Many of you have been asking for an update on my health. Local friends and acquaintances, my many clients, they all politely ask how I’m doing. And I know that really all they want to know is that I’m doing fine. And honestly? I’m fine. I’m working. I’m going about my daily routine barely skipping a beat.

They inquire about my chemo infusions every three weeks. Am I still getting them? Yes. They act surprised, because, you know…I look fine. So they ask the follow up: But the drugs are working, right?

And the answer is an honest one: I don’t know.   No one knows.     Yet.

It sucks that this new drug I’m on, my Godzilla drug, is so new that any answers to my questions about the side effects I’m experiencing aren’t readily available to my medical team. While I watch, they type on their computers, searching the same Genentech website I’ve already been to, seeking resolution to the concerns I have. They read aloud as I recite in a whisper along with them. They glance over and realize quickly that I already know what the Genentech website says. Then there’s the brief pause before they proceed cautiously, repeating what I already know they don’t know.

I’ve done my best to stay very busy these past 18 months, giving myself little time to dwell on the situation. But today it’s become very clear that this situation is wearing me down.

I’m looking for real-time information. I’m looking for firsthand reports from someone, anyone, who’s been given this drug.

That Adele song replays over and over and OVER again, in my head. (Yes, that’s a link.  Take a listen.  Addictive, right?)

Hallo? It’s me.  Hallo from the other side. Hallo from the outside. Hallo? How are you? It’s so typical of me to talk about myself, I’m sorryyyyyy.

I turned to my online support group for feedback. This is a non-public group, and is specific for those with the same diagnosis that I have. Currently there are 1,775 members worldwide. I received 3 replies. One person in Australia had to get off the drug due to debilitating side effects after only 6 rounds of it, but now remains in remission (after three months). Encouraging, sort of.

The other two have been on it for less time than I have, and they don’t know yet if it’s working for them either. They are both much more advanced in their cancer progression than I am, though we are all stage 4.

I remind myself that in all honesty, I only care what this drug will do for ME.  And I want to know NOW.

Godzilla and I have been a team since September. Because Godzilla is cardio-toxic, as were the prior drugs I was on, I continue to have echo-cardiograms to monitor Godzilla’s effect on the ability of my heart’s left ventricle muscle to pump.  And, now I’m also being monitored for my liver function, because liver failure is another potential side effect of Godzilla.  So, you see, it’s all just trade-offs. Have I noticed any symptoms?  No.  Does that mean so far, so good?  No again.  It only means I’m incredibly thankful to  be asymptomatic at this point in time.  And I hope to by asymptomatic for years to come.  Because I want to beat the odds.

And, after five full months I want to know if GODZILLA has done what it was designed to do.  Has it gifted me a revisit to remission? Or at least slowed the charge?

Or has it allowed cancer to persevere and spread even further?

I was due for follow-up scans in December, to get those answers.  But scans were delayed until January due to the travel schedule of my oncologist. She wanted to be available to redirect my treatment plan if necessary.  So I’ve been patiently waiting. The holiday season came and went, and January is about over.

And finally, FINALLY, scans were scheduled for Monday of this next week. And I’ve been counting the days.  PET/CT on Monday, echo-cardiogram on Tuesday.

But this afternoon my oncologist’s office called. It seems my insurance, my OBAMACARE insurance, has denied permission for the PET scan. They have DENIED permission for my PET scan. They have raised my premiums, my deductibles and my co-pays (now at $90 per visit, the highest co-pay my doctor’s office has seen thus far). And now Obamacare, a.k.a. the Affordable Care Act, has DENIED permission for my PET scan. When Obamacare was enacted, they cancelled the plan I liked, the plan I was told I could keep.  After they cancelled my plan, I was forced into a plan that includes maternity and pediatric coverage, two things I’ve not needed since…well, LONG before Obamacare got shoved down our throats.  So, to be clear: I am paying for someone elses pediatric and maternity care, yet I am DENIED a PET scan for my own Stage 4 cancer.

My reaction was immediate and emotional. And my tears have betrayed to hubby what I’m really feeling. I hate when I have an unexpected overload on my emotions. For a fleeting moment, I actually wished I were still a kid, when I could simply race to my bed and cry my eyes out. But then I remembered that those childhood moments never culminated in a calmer sense of emotional stability. In reality, those uninhibited tears of my distant youth simply brought me to a place of physical exhaustion, leaving me no less fearful then before the tears spilled down my face in the first place.

I struggled to keep composure on the phone. But I managed to beg for my oncologist to go to bat for me (AGAIN) with Obamacare.

I don’t know that she will. I don’t know that she won’t. I only know that before they even called me, my Monday appointments to get both the PET and the CT were already scratched from the schedule. The echo-cardiogram remains for next Tuesday and the CT was rescheduled for next Thursday…just one day before I sit down in front of my doctor and receive results, assuming she even has them. I actually asked, and was told they’ve put STAT orders for the CT results.  They’ll be interpreted PRONTO, I’m told.   Right.     Don’t make me hunt you down.

And then, we’ll see how well that CT scan reflects results.  My guess?  It won’t.  And a PET will be required for a more conclusive look…as has happened TWICE BEFORE.

And upon the big (or even inconclusive) reveal, once my emotions have calmed to a more demure level no matter the words I hear, you can bet your bottom dollar that I will be looking ahead. Looking towards the horizon, towards a better day.

Thanks for taking the time to follow along.  For your support. It’s much appreciated.

 

 

That God Damned Bell

It was immediately apparent to me, just by the look on my oncologist’s face, that ‘remission’ was not a word she would be using this time around. Instead, she used a word I hadn’t expected to hear when summarizing what the CT scan results showed with regards to the progression of my metastatic cancer: uncertainty.

So, a PET scan was next and rather than have it done immediately, we decided to wait another four weeks. If suspicious areas on the CT scan were too small to decipher, than imagery on the PET would be equally small. By waiting a few more weeks it would be clear by then whether or not cancer was still on the move.

It was unsettling to wait but hubby and I stayed busy with our daily routines, neither one of us talking much about what might or might not be. But the unspoken anxiety for both of us was palpable.

We hosted a barbecue for his golf buddies the last weekend prior to the PET scan. Hubby had been looking forward to this for some time…he’d laid out a 9 hole course that meandered around our property, and he even had a cheap trophy engraved with ‘ANNUAL OAK KNOLL YARD CLASSIC’ that he was going to award to the winner.  We expected guests to begin arriving around 3:30 or so.   Hubby got started early that day, working in the hot sun setting pin flags in place, lining fairway boundaries. Then with just about 45 minutes to spare, he finally raced inside to shower. I heard the water turn on and knew the shower wouldn’t last too long, because he still had to run out and purchase some bags of ice for the ‘beverage cart’ – a wagon he’d attached to the back of our riding lawn mower (not that we have any grass to mow…the drought has left us with a parched field)

I was busy myself with last minute food prep, so when hubby suddenly rushed by me after his shower to announce he was going out for the ice, I never looked up. But I heard the gravel spin from beneath the tires as he peeled out of our driveway.

And here is where I can only tell you what hubby told me (between fits of laughter) upon his arrival back home: hubby had arrived at the convenience store in record time, and in an effort to hustle even more, he asked the attendant behind the register where the bags of ice were. Rather than responding, the attendant just stared. So hubby repeated the question, probably in that tone of annoyance I’ve heard just a few times over the past 39 years. The attendant blinked a few times and then very calmly asked, “Do you know you have a Q-tip sticking out of your ear?”

I can picture hubby’s hand shooting up to his ear to retrieve the forgotten Q-tip. But I have to hand it to him. He had a quick comeback: “My wife usually looks me over before I’m allowed to leave the house.”

And to that, the attendant quietly noted “I’ve never seen that before…” (Apparently he’d really thought he’d seen it all.)

Well, hubby hadn’t bought enough bags of ice. It was a blazing hot day, and we were clearly going to need more ice than the six bags he came home with. So I jumped into the Jeep and peeled out of the driveway, leaving him with the first guest who’d already arrived. In my absence they were going to load up the wagon with beers, water bottles and those first six bags of ice.

I arrived at the same convenience store where he’d just been. I approached the register.

“Hi. I’m the wife of the guy who came in with a Q-tip in his ear,” I blurted out. “Do you have any more ice?” Immediately I heard laughter from guys I couldn’t even see. Phantom employees. Hubby likely had made their list of ‘the dumbest things customers do’. And, in that moment, it became clear to me that the stress of the past weeks had a very silent grip on hubby.

Waiting for the PET results was excruciating. After two days, I finally reached out to my fabulous internist to see if she could shake the results loose. And within hours, my oncologist called me mid-afternoon. I immediately sensed the news wasn’t going to be good. Normally my oncologist waits until after 5 p.m. to make her calls.

Cancer is on the move.  Those drugs that I’ve been getting every three weeks for over a year have failed me.

So now we’re on to Plan B. It’s a brand new drug (FDA approved in 2014) that’s even more finely honed than those other two sniper drugs. But it was ONLY approved for use in patients when those other drugs failed (the very same I’d been getting).

And, while those other drugs were considered the BIG GUNS, this one is the freakin’ GODZILLA of BIG GUNS.  The medical name of the drug even sounds like Godzilla. So I take that as a good sign.

Godzilla carries a double punch in the form of two components: there’s the carrier drug (component #1) which hones in solely on the HER2 gene mutation that causes the cancer cells to proliferate so quickly, and then there’s the chemo drug (component #2) that’s piggy-backed onto the carrier and then penetrates those cancer cells to kill from within. BA BAM! A ONE-TWO SNIPER PUNCH.

I just had my first round of it two weeks ago, and it was already a day of high anxiety which then got compounded by an unexpected delay, due to an administrative error made on the paperwork submitted to receive the drug. Which meant they didn’t HAVE the drug to give me.

I tried to remain calm. I didn’t care how long the delay was, just as long as I didn’t go home without getting my drug. But hubby was visibly agitated and I could see his patience was wearing thin. Eventually, with some encouragement from me, he just opened up his laptop and refocused while the clock continued to tick and I continued to simply wait.

Finally, finally the good news came. The private practice on the floor above had the drug and they were willing to send it down for me. GODZILLA WAS IN THE HOUSE.

So after a very stressful three hours of waiting, I was given some Tylenol, then my Portia was activated and connected to the IV. The first bag to drip was a bag of anti-nausea drugs. Fifteen minutes for that. When that bag emptied, Godzilla was presented with great care. The nurse handling the bag bent down and showed me the label on it, which had my name and birth date, the name of the drug, and the dosage.

She hooked Godzilla up to Portia, and I noticed there was an added piece of apparatus attached that I wasn’t familiar with.

“What’s that?” I asked. Turns out it was a filter, apparently required to ensure a safe drip on this drug.

The nurse explained that for this first time around (and again the next time), the drip would be administered over a ninety minute period of time due to risk of a dangerous reaction, but normally it would take just 30 minutes. So today I would be observed closely throughout, and even after the infusion was completed, I would have to stay another ninety minutes for observation.

I hadn’t expected that news. I glanced at my watch and realized that by the time this was all done, I’d be hanging out with the janitors cleaning up for the night. And the unlucky nurse assigned to observe me.  Whatever, let’s just get on with it already.

Because I wasn’t in a chair that was in a direct line of vision from the nurse’s station, a small desk bell was placed beside me, and I was told to press the bell immediately if I felt any reaction to the drug whatsoever, because the drip would need to be stopped right away if I experienced any adverse reactions.  And no one had to explain to me what THAT would mean…adverse reactions mean the drug is no longer an option.

“What kind of reaction would I ring the bell for?” I asked the nurse. There was a whole list of things. “Difficulty breathing and/or shortness of breath, if you feel your air passages closing up, you know…your throat closing up, or if you experience the onset of feeling flushed, or light headed. And one more thing: if you feel a sense of impending doom.” Those last two words were said in a lower tone of voice.

Whoa whoa WHOA.

Impending doom? What’s that mean exactly?” I could feel my composure beginning to crack.

She explained. Apparently it’s not uncommon to get a sense of impending doom just prior to something physically catastrophic happening.

Hubby abruptly stood up and took that exact moment to announce that he was heading out to the lobby to return a few business calls. Speechless, I looked at him. You’re going to leave NOW? But I only articulated that inside my head. Then it occurred to me… the stress must have become too much for him.  Either that, or he was completely and inexplicably clueless. But I like to think he was just overly stressed.

So I put on my best ‘I got this!’ face and calmly said “Okey doke, I’ll be right here!”  And with that, he took his cell phone and left, leaving his computer for safe keeping with me.   I watched his departure, his walk for important phone calls.  If I’m dead when you return, I hope you’ll know that I still loved you even though you chose THIS MOMENT to leave my side.

The nurse began the Godzilla drip, but immediately the machine beeped. Something wasn’t right. The drip wasn’t dripping. Hmmm. The nurse checked the IV line for any bubbles, crimps. Nothing. She started the drip again…and again a BEEP.

“Maybe it’s the filter?” She went to get another one and came back to replace it. OK. Here we go.

BEEP. Nope. Hmmmm. She disconnected Godzilla from Portia, took the whole bag, lines, everything and went to speak to the pharmacist right around the corner. She returned with yet another filter attached…a different style this time. Okay now. Lets try this one more time. She hung the bag back up, reconnected Portia, activated the drip…success!

She apologized for the difficulty and delay,  and I knew she felt badly that this day had not gone well.  She reiterated, in a stern voice, that I was to immediately punch that bell should I feel at all weird.

Stop the drip? NO GOD DAMNED WAY.

Okay, I will, I told her.

I watched as the first drops worked their way out of the bag hanging above me and glanced down at where the line fed into my Portia. The nurse watched me watch. Then I shrugged, smiled at her and said “Alrighty then. Here we go!”

She returned to the nurse’s station where the other nurses tend to congregate in between patient needs.

Within moments, I felt a restriction forming at the base of my throat. Not too unlike when I get heartburn, or whatever causes that bubble sensation when I eat certain foods. But this was much more intense. It was startling actually and for a quick moment I could sense my heart beginning to race. Anxiety, right?

Don’t press that bell. Do NOT press that bell. I closed my eyes and feigned dozing.  Through my nose, I took in as deep a breath as I could.   –Still breathing; check.

But the restriction, or heartburn, whatever it was…it was gaining intensity. I’d eaten half a turkey sandwich while I’d been tapping my toes hours earlier. It had to be heartburn. But turkey sandwiches don’t normally cause me heartburn. It must be the turkey they used in the cafeteria. That must have something in it…right?

Don’t press that damned bell! DON’T PRESS THAT BELL!

I tried to relax, I tried to meditate.  I wiggled my fingers on both hands, and then wiggled my toes, my nose, flexed my leg muscles. BODY, DO NOT LET ME DOWN.    STAY FOCUSED.   Damn it. I casually and subtly positioned my hand so that it hovered above the bell. Is this what a sense of sudden doom feels like?

What the hell does a sudden sense of doom feel like, anyhow?

I took another deep breath. No change. I kept my hand positioned over the bell and peeked to see if the nurse was watching me. She wasn’t.  I decided to activate my iPhone music, since my ear buds were already draped around my neck. I chose a playlist I created and named UPBEAT. A song by Family of the Year, called Hero, began to play. It’s not upbeat.  As I got swept into the melody and lyrics, my eyes got teary and overwhelming emotion began to squeeze my heart.

Knock it OFF. You are fine. You are JUST FINE.

Suddenly, like out of left field,  I became aware of the fact that my throat was no longer constricted and I felt completely normal. Whaaaat? I opened my eyes, glanced around, watched the lady in the infusion chair just a few feet away to my left…she was knitting and didn’t look so hot. Frailty had stolen her healthy appearance.   I wiped a rogue tear from my cheek.

I glanced over at the nurses all gathered around their station.  “How are you doing?” one asked me.  I gave her a big thumbs up and a smile of sheer confidence.

Hubby returned an hour or so later, and sat patiently with me as my infusion proceeded. “How’s it going?” he asked.

By the time we finally left to go home, it was down to me, two nurses and the janitors…just as I’d thought.

So, now, two weeks have already gone by. During that time, I’ve flown to Chicago to see my Mom for five days, then on to Ohio to watch proudly as hubby was inducted into his high school’s Athletic Hall of Fame. I even played a few holes of golf, sat in the pouring rain to watch the Homecoming halftime announcement of inductees, and marveled the following night at some late evening snow flakes that fell upon me. But returning home to Marin County never felt so good.  Life goes on for us.

My second infusion is scheduled for this Friday. And this time I might just take a page from hubby’s playbook by showing up with a Q-tip sticking out of my ear. Once they turn Godzilla loose to hunt down the bad guys, that Q-tip can serve as a sense of impending stupidity… and maybe it will help to keep my hand away from that god damned bell!

Onward.  #BringIt

Apple Pie and The Right to Die

For those of you who got an email alert late last night (as well as each time I post something new to my website), you might be wondering what happened to that post I’d written and titled ‘An Open Letter To Governor Jerry Brown’.

This will explain.

After learning on the evening news yesterday that the legislation for the ‘End of Life Option Act’ had finally arrived on the Governor’s desk for his approval or his veto, real HOPE got the best of me. I immediately sat at my computer and in a flurry of emotion I wrote the now deleted letter imploring him to SIGN IT INTO LAW.

Most Americans would be more familiar with this legislation as the ‘Death with Dignity Act’, which Brittany Maynard brought to the attention of our national media last year. At just 29 years old, Brittany had terminal brain cancer. She had to move from her home in California to our northern neighboring state of Oregon in order to end her life with dignity. Oregon voters passed this law back in 1994.

I believe with all my heart that every individual who is terminally ill should have the right to choose for themselves their own pathway toward their impending death. These words from our Declaration of Independence for these United States of America should ensure that right: We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

Death and dying are a part of life. Yet I know that there are many who remain steadfast in their opposition to this legislation. Remember, without life, there would be no death. So to those opposed, I ask you where is the humanity, the compassion, and the common decency in watching someone you love suffer a prolonged and painful death? Would you deny one of your terminally ill family members a peaceful death if they begged for a semblance of dignity? Would you instead prefer the anguish of watching them suffer in their final months or days, knowing that you’ve denied their own personal wishes? Are you aware that someone else’s impending death is not about YOU?

Further to those opposed to this legislation I’d say: Support it anyhow, and when your own time comes, feel free to suffer as much as you’d like. No one is stopping you from experiencing your own terminal illness with whatever pain and agony will come to you, all for your own loved ones to witness. Completely YOUR choice, and I would be the first to support whatever YOU choose to do in your own impending death. Because that choice should never be anyone’s but your own.

As soon as I’d posted my open letter to Governor Brown onto my website and Facebook page, I climbed into bed, but became amped up even more …and quickly realized I was actually uncomfortable with my decision to be so public about this particular issue.

So I reached in the dark for my iPhone and I decided to read one more time my words to Governor Brown. And in doing so, I became aware that some of you might interpret them to think my time on this earth is now within my sights. It’s not. It may be out there on the horizon somewhere, but I don’t see it, not yet. I’ve had to stop worrying about what the statistics on my own diagnosis suggest. And although I live in the ‘here and now’ as was recommended by my oncologist, I also have no illusions about my cancer; I’m fully aware of the magnitude of this very personal challenge.

And the reality? It matters not one iota what I think Governor Brown should do, because the legislation is already sitting on Governor Brown’s desk, passed finally by both the Assembly and the Senate after hours of in-depth discussion and testimony from many on all sides, including Brittany’s husband and Brittany’s mother, both of whom were at her side when she passed.

With the ease of iPhone app technology, I deleted the open letter just fifteen minutes after I’d posted it (to both my blog site and my personal Facebook page). Then I checked my blog stats… twelve visitors in those fifteen minutes, and one Facebook share…all honed in on that Open Letter to Governor Brown.

I felt better once it was deleted but remained awake all night, too edgy to sleep. I wondered if Jerry Brown was sleeping soundly, if he’d already made up his mind about this legislation, one way or the other.

As I sipped my coffee early this morning, it really began to bother me that I led you, my loyal followers, to a dead end post. So, here’s why I’m back on my laptop posting once again, a bit embarrassed if truth be told to have posted something that I truly did not feel was the correct expression of my feelings.

I’ve just carved up 30 apples I picked from our own backyard apple trees. About half of them, all perfect on the outside, were actually already rotten on the inside. And that seemed fitting as an analogy to sum up my feelings a bit more concisely:

Things aren’t always what they seem. NO ONE knows the pain and suffering of someone else battling a terminal illness. On the surface, they may appear to be managing well. But until you peel back those outer layers revealing quite the opposite to be true, you likely spend little or no time imagining your own death.

So today I am making an apple pie from those apples that were healthy inside AND out. And I will pray for Governor Brown to honor our Declaration of Independence by signing the End of Life Option Act into law. It would bring me personal peace of mind, and I suspect it might do the same for you.

If he vetoes it instead, when my finish line is within clear view don’t be surprised to receive a ‘change of address’ notice from me. I’ll be in beautiful Montana, or Oregon, or Vermont, or any other state where I can live out my final days in the manner of my choosing.

Thanks from the bottom of my heart for hearing me out.

My apple pie looks about as distressed as I feel waiting for Jerry Brown's decision. Hope the distress doesn't doom the palatability!

My apple pie looks about as distressed as I feel waiting for Jerry Brown’s decision!

The Unpredictability of Science

Reflections twelve months into treatment:

This month, September 2015, marks one full year since I embarked upon the daunting campaign against the re-emergence of cancer. And, what a year it’s been.

In order to understand the specifics of this recurrence, I had to get re-educated, specifically about the magnitude of what I’m dealing with. And I’ve learned so much.

Most helpful was watching all six hours of the film documentary produced by Ken Burns called ‘The Emperor of All Maladies; A Biography of Cancer‘, based on the Pulitzer Prize winning book of the same title authored by Dr. Siddhartha Mukherjee.

I’ve learned about the history of cancer. Cancer has been around for CENTURIES, long before humans created the toxins of industrialized advancement, and long before humans began to chemically modify food sources grown from the ground of this earth.

I’ve learned about the science of cancer. Cancer doesn’t just lurk within. Cancer is the result of healthy cells going rogue. Normal cells morphing inexplicably into killers.

I’ve learned about the incredibly vast scope of cancer. With each new ‘breakthrough’ in cancer research, it only opens the doors to another Pandora’s box with a whole plethora of complexities never seen before.

And, I’ve learned about the horrific unpredictability of cancer. Back in 2004, statistics showed that the odds of my early stage, slow growing cancer coming back was just 3%.

I’ve learned that some things in life aren’t explainable, because the science of these things has yet to be puzzled out.

I’ve learned that a future of questionable longevity, if allowed to saturate your every thought, only brings a life of vibrancy to a screeching halt long before it’s truly time.

I’ve learned that the compassion of faceless strangers, in a cyberspace network of support specifically formed for those who share my same diagnosis, can move me to tears just by reading their own stories; stories of fear, of strength, of perseverance and of acceptance.

I’ve learned that the power of knowledge can bring a sense of control, even when control in the context of science is nothing more than a wishful yearning.

And I’ve recently been reminded that nothing, NOTHING can be taken for granted. Those whom we love can be taken from us unexpectedly, at any moment, in the blink of an eye.

I try not to waste a single moment dwelling on the road ahead. No one knows what is coming. No one.

And while I thank God that I am navigating this world with the support of family and friends whose love envelops me, I am feeling sadness that there are so many others, whose friendships I’ve cherished over many years, that suffer from the unpredictability of science, and whose struggles are far more daunting than my own.

I imagine most people, when diagnosed with cancer, feel the same overwhelming challenge I did back in 2004 and again just one year ago: the challenge of staying anchored in the ‘here and now’.

It’s a learned skill, and cancer taught me that too.

Don’t Be Scared, Okay?

1508991_10152560487116439_7362674108437283273_nOkay, so it’s been a crummy few weeks. In a moment of lost composure, I posted a snippet of my frustration to Facebook. Mistake. Within 24 hours, I deleted it again.  And I’ve not updated here because I keep waiting for a brighter perspective to seep into my thinking about it all.

So here it is.

I completed radiation two weeks ago. (YAY!) Radiation didn’t leave much in the way of a calling card… skin burn and some cumulative fatigue to pile on top of the cumulative fatigue I’d already been gifted from chemo. That first batch of fatigue had just begun to recede when I began my daily treks to the city to get radiated.

After too many weeks, I finally allowed myself to count down the last remaining treatments. My second to last appointment happened to fall on Friday the thirteenth. And wouldn’t you know? I had a full schedule that day with not one, not two but three medical appointments all scheduled on Friday the thirteenth. Maybe that’s the nod medical folks need to mess with their patients. Hubby came along with me on this day. His lucky number was always thirteen.

First stop of the morning: oncology. I got my required blood draw, then hubby and I trotted down the hall to the suite where I get my drug infusions (the ones I get every three weeks). The nurse hooked up my Portia to the IV drip and two hours later I was once again ready to roll.

Second stop was radiology. Excited to finally see this particular finish line within reach, the technicians high-fived me as I entered the room. “AFTER THIS, JUST ONE MORE! WE’LL THROW A TICKER TAPE PARADE FOR YOU!”

My last appointment of the day: echocardiogram.

And here’s how it went down:

I report to the cardiac care center, two floors above radiology. After changing to a hospital gown, I’m seated on the end of the exam table. The technician (who’s technically a sonographer, and whose English is not great) begins by stating that she’s already seen my prior echo results. And now she wants my confirmation that those last results were prior to beginning chemo.

“No,” I tell her. “My last echo was done three months after beginning chemo.”

She raises her eyebrows. “Not before chemo?” she asks.

I tell her my FIRST echo was before chemo started. My second echo was three months after chemo began. I tell her that both those echo results were normal. And now this, my third echo, is three months after my second echo. Every three months, I tell her. I get them every three months.

She doesn’t seem terribly satisfied with my full explanation answer. Maybe it was more than she wanted to know. Maybe she felt it sounded a bit like a lecture. Oops. But I wanted to be sure she had her facts straight…you know, those facts about MY medical tests.

She now asks me if I know what my blood pressure is. I tell her no, I don’t know.

“You don’t know your blood pressure?” She’s starting to annoy me, and I think to myself: I’m in a cardiac facility and she’s not going to take my blood pressure? She’s just going to quiz me about it?

“Well, I know it’s normal because they just took it this morning before chemo,” I tell her.

“And you don’t know it?”

I nicely ask why she doesn’t just take it herself. I gesture to the equipment sitting behind her. And she seems miffed. And then she asks “What’s generally normal for you on your blood pressure?”

So I tell her “115 over 70 …somewhere around there.” And that’s what she types in on her computer monitor where I see my name blinking in the top data field. 115/70.       Alrighty then, moving on.

She wordlessly glues sensors all around my heart area. Each sensor is connected by long tangling lengths of thin cable to a high tech piece of equipment that is used to measure how well my heart pumps with each beat. Once I’m fully wired, I’m asked to lay back and to roll over so that I’m fully turned onto my left side, facing her and the high tech equipment. Then she wants me to scoot forward to the extreme edge of the table, even closer to her. With a quick release, a small section of table directly beneath the side I’m turned on drops away. This is how she accesses my heart area from beneath me, using a wand gadget that has gel on it, much like those used for ultrasound tests.

The computer screen is positioned very closely to my head and it’s angled so that it’s very easy for me to see. I refocus and watch silently as colorful imagery (that looks and moves just like the flames of a campfire) comes to life on the monitor.

She works the magic wand with her left hand, repositioning it as she goes to capture all angles of my heart, and with her right hand she uses the customized computer keyboard, deftly capturing snapshots and drawing etch-a-sketch type circles around those still shots that measure…well, I’m not sure what it measures specifically. All I know is she’s assessing my left ventricular ejection fraction (LVEF) which is the measurement of how much blood is being pumped out of the left ventricle of my heart (the main pumping chamber) with each contraction.  Pop quiz after this read.

About fifteen minutes in, I’m thinking I may as well nod off. But instead I re-focus on the monitor and notice the flames are suddenly still. No lines are being drawn around them. But now I see there are six small sub-windows on the monitor, displayed off to the side. They appear to be prior images already taken. I wonder why she’s reviewing what she’s already seen.

I subtly shift my eyes to her face, being careful not to move my body at all. But I’m caught red handed…looking at her. Awkward.

She has that universal look of alarm written all over her: the widened eyes, the speechless blank expression.  After two or three melodramatically very silent moments, it’s a bit of a stare down. So I finally break the ice.

“Everything okay?” I say it in a lighthearted tone…in jest, really.

Still deadpan silence. She suddenly swivels back to the computer monitor, clicks a few more times on what I assume are prior images, and then abruptly leaps up from her seat.

“Don’t be scared,” she blurts out. “I’m going to look at your last echo.”

My last echo? I barely heard that last part because she was already out in the hallway. And, she’s already seen my last echo…she told me so at the beginning.

GOD DAMMIT. Don’t be scared? Well, too late for that.

Now my heart is pounding as I struggle to stay calm. Minutes tick by. I want my hubby. I attempt to sit up but immediately feel the strain of all these sensors glued all over my chest. More minutes tick by. I look at the clock wondering how long she plans to be away…maybe I should just get off the table and drag the equipment behind me. HUBBY! HUBBY!

I decide instead to look more closely at the computer screen. All imagery is stopped, no flames flickering or colors flaring. I squint at the data fields. I see percentages. But I have no idea what those data fields are. The percentages are very low. Huh. Maybe those reflect the minimal effort my heart utilizes in order to function …which would mean my heart is a powerhouse, right?

Just as I’m pondering and panicking all at the same time, she reappears. And immediately she repeats “Don’t be scared.” But, she looks distressed. So I ask her again, is everything okay?

She shakes her head with the universal sign for no. “This is borderline,” she says.

“Borderline? Borderline normal?”

“No. But don’t be scared. I’m not a doctor. A doctor will tell you.”

I’m stupefied and now I’m speechless. But she continues. “I work twenty years. The patient is my one concern. Understand? You get dressed now, but don’t be scared. Doctor will call you. You don’t be scared, all right?”

Ya. Right

We drove home in Friday rush hour. Hubby and I spent a long 48 hours stewing over this. I berated myself for not demanding a cardiologist on the spot. I berated myself for not dragging all that equipment with me to get hubby from the waiting area. I berated myself for not telling her that her ONLY job was to DO HER JOB and to keep her opinions to herself.

I even berated myself for allowing my mind to wander, in the days just prior, to a happier and easier road ahead…one that would take cancer from my daily planner, and kick it to the monthly page instead.

Finally I reached my oncologist by calling her on Sunday night. And then on Monday, I called the hospital administrator who oversees the management of the cardiac care center where I had my echo. I felt he should hear about my experience there on that Friday the thirteenth.

I won’t bore you with the nitty gritty detail…other than to say that I am once again in an elite group.  I’m one of the five to ten percent of patients whose hearts are adversely affected by these cardio-toxic drugs… the only two drugs that are gene specific to my exact diagnosis and therefor the clear standard in any effort to prolong my life.

Shit.

So now my journey has taken a detour. I get to add a cardiologist to my medical team. He’s head of cardiology for the medical center, so I imagine I’ll be in another set of good hands. (I could field a baseball team with all the good sets of hands watching over me.) As it happens, he’s also the cardiologist who reviewed my echo results that very day.

Two days ago, I arrived for my appointment for a routine blood draw and then a visit with my assigned oncology nurse. After the routine exam and discussion of ‘how I’m doing’, she surprisingly suggested (almost as an afterthought) that maybe I should get a chest x-ray for a lingering cough I’ve had. With a compromised immune system now, every little cold becomes a big deal for me…so not only have I had this crazy annoying cough, I’ve also had a few other cold symptoms I’ve not been able to shake. But, it’s just a cold, granted a more annoying cold than I’d have ever gotten pre-cancer, but still…it’s a cold.

Hubby and I head down to x-ray. (Hubby has been a valued partner in this whole journey, let me tell you) The x-ray technician takes the first image. “Hmmm, there’s some haze there,” he says. “Turn to the side and I’ll take one more to be sure.”

He’s put a STAT on the x-ray results and tells me I may as well hang around in case there’s anything further my doctor may want me to do. He directs me to wait for results back upstairs in my oncologists office.

The receptionist there is surprised to see me return. I explain I’ve been told by x-ray to hang out for a bit. “Really?” she asks. “You don’t seem sick.”

“I know!” I tell her. “I’m actually feeling pretty good! Aside from this cough.”  And, then word comes.

Damn it. I have pneumonia.

And now that my oncologist has realized I’m still in her suite of offices, she asks to see me personally. I didn’t have a scheduled appointment with her.

Turns out she too has been fighting some sort of bug, and has lost her voice completely. “Well,” she whispers, “I do nothing but talk most of the day.”  I suppose that’s true. Hubby and I sit in the two chairs in front of her desk, and right away we both lean in closer in an effort to hear her better, as I try desperately not to cough.

She whispers that she’s had several conversations with the cardiologist (the one who interpreted my echo results from Friday the thirteenth). They’d discussed not only the results, but also the manner and level of professionalism (or lack of) in which the sonographer administered the echo test that day. And then with a smile she says my ears should have been burning with all the discussion about me. “Really?” I squeak trying to suppress a cough.

Then she wants to know if I’m related to the ‘celebrated family’ in San Francisco who shares our last name. I think that’s rather an odd question, especially after all this time she’s been my doctor, so I answer honestly. “Not directly, but I’m sure there’s a link generations back somewhere.”

Now she gets down to business and whispers her new game plan. It seems that my heart now takes precedence over my cancer, so she is suspending my infusion treatments for one round. She is ordering another echo three days before the next scheduled infusion round is due (towards end of April), to see if my heart muscle has rebounded. I’m told that often the heart will rebound on it’s own, given a break from these cardio toxic drugs. If it has rebounded, she will proceed with that late April infusion as scheduled, but using only one of the two drugs.

This doesn’t make me happy. It’s these two drugs working together that have been so groundbreaking in their ability to buy a patient more time.

“How will you choose which one to drop?” I asked her between coughs.

I know all too well that first; doctors aren’t God, and second; when it comes to cancer, there are no rules. She told me she wasn’t really certain which of the two drugs she’ll drop, but she suspects she’ll drop the newest of the two, the one approved most recently, in 2012. If all goes well down the road, she could add it back in.

So, hubby and I came home and I Googled that celebrated San Francisco family who shares our last name. And I learned that the patriarch, who passed away just a few years ago, was a huge philanthropist, highly admired. He liked to stay under the radar, but contributed in huge ways to many causes. He served on the boards of museums, aquariums and colleges, and quietly but joyously supported the world of sailing (one of his many passions) as well as The America’s Cup. Turns out, he also spent forty one years serving on the Board of Directors for the California Pacific Medical Center, the very place that is home to my team of good hands. No wonder they were all abuzz when my ears should have been burning. Wouldn’t you have loved to be a fly on that wall? Makes me smile just to think about it.

Three R’s

Screen Shot 2015-01-29 at 9.53.45 PMFor whatever strange reason, hearing that one singular word last week (remission!) was peculiarly hard for me to absorb.  Sure, the CT scan showed great results,  so logic would say I should just breathe in the good news, revel in it and joyfully celebrate.  This whole journey has been so peculiar from the outset.  It’s hard to emotionally stand down, take a step back and ease up.

After my oncologist happily declared my remission, we went on to discuss next steps in the treatment plan. Steps which are above and beyond the ongoing schedule of infusions that I continue to receive every three weeks.  We discussed other tools in the weapon arsenal, one of which is radiation. Given the outstanding results of my CT scan, my oncologist felt the discussion should continue with a specialist in radiation oncology.  So she set me up for a consultation appointment with the radiation oncologist who is also a member of the ‘tumor board’…a weekly gathering of highly skilled physicians who provide a forum for discussing complex cases that require an integrated and multi-disciplinary approach to treatment.

Hubby and I met with him two days ago. Turns out, he’s very familiar with my case (and has been following it for quite some time) because it was thoroughly reviewed and discussed with the tumor board months ago.  And given my history with cancer, which my entire medical team thought we’d licked eleven years ago, he pointed out some unknowns.

First, there’s considerable question (and no way of knowing) whether or not my cancer is an actual recurrence from eleven years ago.  The possibility exists that there might have been ‘rogue cells’ left behind which have since migrated to a new location and thrown out a new twist in the form of a gene mutation…making this a much more aggressive cancer now.  The migration scenario isn’t impossible, but it’s also not terribly likely given the scope of multiple surgeries I endured all those years ago. However, the fact still remains: there is no way of knowing for sure.

Second, although the cancer was found in the axillary tissue adjacent to and tucked up around a swollen lymph node, the swollen node proper did not have cancer cells present. So, one might presume that the cancer had traveled no further, although the pathologist reported that there was ‘likely lymphatic invasion’ based on his findings that the adjoining tissue had cancer ‘percolating throughout’.  Which leaves the possibility that the cancer could have already attacked nodes which would no longer be detectable on the scans.  And we already know that scans don’t catch all cancer, especially microscopic in nature.  I found that out eleven years ago at the very beginning of my cancer journey.

As hubby and I listened to what is UNKNOWN about the particulars of my case, I felt oddly assured.  The mighty fight is going to continue, even after six hard rounds of chemotherapy and a host of bizarre and annoying side effects.  Even with an excellent CT scan result,  that one singular R word, remission, rings awkwardly in my ears.  I would love to be convinced about remission with absolute certainty, but the fact of the matter is…I feel no certainty about this.  Cancer is a nasty beast.

Oh how I would love to grab that word ‘remission’, knowing confidently that it has been firmly affixed to my medical records.  But there’s an unease that I can’t deny.  A discomfort, an intuition…and it’s screaming at me:  ‘Tread lightly! Eyes wide open! Insidious enemy lurking! Don’t let your guard down!‘  

Which brings me to the second R word.  Radiation.

I’m going for twenty five rounds of it, five days a week for five straight weeks.  Based on the brazen return of this enemy, and with the use of a linear accelerator (doesn’t that just sound so freakin’ awesome?!) we’re going to blast the hell out of the whole damn lymph node playground.  There will be no percolating allowed.

Remission and Radiation.         Radiation and Remission.

Those two R’s go hand-in-hand, clearly.  The third R?

RELIEF.

One Singular Word.

Never in my wildest dreams did I expect the sound of just one singular word to be so pivotal to my sense of well being.  It’s been a wild ride, these last six months.  A left-field diagnosis that came with a nasty gene mutation I’d never heard of (gene mutation? Who the hell expects THAT to be on their medical radar?) It was so surreal to me, all I could think of was the same three words, over and over again:  I have WHAT?  (picture a deer staring into the headlights)    What?  (still a deer staring into the headlights)  I have WHAT?   (you’ve got the visual now, right?)

Because time was of the essence, I was immediately catapulted to a journey that took me from what I thought was a ‘more than acceptable’ and maybe even an ‘above average’ life of really great (albeit aging) health and plunked me down hard forcing me to face a future that statistically says my life is going to be substantially abbreviated… thanks to this mutant ninja gene mutation that moves at a very stealthy clip. In short: prognosis statistically is grim, and I know this because the internet tells me so.  The oncologist didn’t say it that way.  She said This is a disease that is best managed in the here and now.  Cleverly crafted phrasing that drove the message home.

BUT, statistics were garnered from studies of patients that didn’t include me, and from studies that weren’t from the here and now, but from the then, a.k.a. yesterday.  Diagnosed in the here and now, medical technology has advanced since yesterday, and miraculously produced some new extremely promising drugs.  They can’t CURE me, but they can sure tip the scales in my favor…maybe even buy me LOTS more time.  I’ll be on these drugs for the long haul, every three weeks by IV infusion.  They go after the gene itself, direct to the crime scene.  Bada bim, bada boom.

The round of chemo drugs I just finished go everywhere…they invade the whole damned community, killing everything they can in order to sleuth out the bad guys.  Well, they got my hair, and they are STILL killing my finger nails, and even the nerves in the bottom of my feet.  But in the grand scheme of things?  Who cares… it’s just hair.  Hair and finger nails will grow back eventually.  And, although incredibly annoying …well, all these side effects from nasty chemo are incredibly annoying, even numb feet are no big deal. No, really.  I can’t feel my toes or the balls of my feet, but hey; no biggie.  They’re just feet.  I can wobble around with the best of ’em.  There’s shoes for that problem, right?  Well, I’ll have to get back to you on that one.  But guaranteed, I’ll be back out there whacking golf balls if I have to use walking stilts to get around the course.  Mark my words!

The singular word that changed my sense of well being?  Nope, it wasn’t CANCER…that nasty six letter word only served to bring out my own stealth ninja instinct to kick cancer’s butt.  Cancer will NEVER define me.  It tried once before, eleven years ago when I endured multiple surgeries, each one with additional bad news until I finally forfeited body parts. I don’t need that stuff anyhow.  It’s just body parts, not major organs.  Unneeded body parts?  I’ll take my future, thank you.

So, then… you’re probably wondering what IS that singular word that’s become so pivotal to my sense of well being.  I just heard it today, actually.  It was joyously pronounced by my oncologist.  REMISSION.     REMISSION.  I am IN remission.  I am in FULL REMISSION.

As hubby and I were getting back into our car, preparing to head home to Marin County, I  had to ask.  Did she say I was in remission? Did she use that exact word?  Hubby happily confirmed what I already knew she’d said, exactly. She said I was IN REMISSION. She was smiling broadly when she said it and she’s not a smiler, normally.  She told me I’d ‘responded to the chemo extremely well.’

Actually, I simply showed up when scheduled, my Portia (to the newbies here, Portia is my chest port…she’s implanted, I HAD to give her a name) did her job channeling those creepy drugs from the IV drip bags directly into my heart and onward throughout the rest of my body.  I ‘responded’ the only way I know how to respond…mentally prepared and ready for the fight.  Throughout my lifetime, that example has been set for me time and time again. My peeps don’t mess around.

REMISSION.  Peculiarly hard to wrap my brain around that word…just like it’s been so hard to wrap my brain around this stinkin’ gene mutation that they tell me I have. I’ll always have it …lurking….and because of that, I will continue to go forward with those new breakthrough drugs, getting them via IV drip every three weeks as planned.  Portia and I will be a team for the long haul, or at least the foreseeable future.  But today? The shadow of ‘a fight to the death’ has been temporarily lifted.  My silver linings are glowing.  They’re almost blinding, in fact.   Damn.  It feels so good.

REMISSION.  Now THAT’S a great word.  A word to celebrate, to worship, to pray to God for.  I hope it stays glued to my medical chart for years to come.  Because I want to drive nails into that word, to ensure it NEVER leaves my medical chart.

CANCER, you will never define me.  Even if you prove those damned medical statistics out, you will NEVER define who I am.  My life, my ‘new normal’ will march onward because I keep my eyes on the horizon, I don’t look down, and I don’t give a crap what you’ve got up your sleeve.  I have an ARSENAL stockpiled; I’ve been blessed with a medical team that is truly outstanding, not to mention a host of friends and family who surround me with unending support, nurturing, and unequivocal love. I’ve got a hubby who continues to love me through every single moment, whether it be high or low or tearful or not. He is there with me every step of the way.

And finally, I’ve got the instinct of a ninja SURVIVOR.  I’ve been trained by the best of the best….I’m tellin’ ya.  Don’t be messing with me.  I GOT THIS.       And, now…if you’ll excuse me, I’ve got a life to get back to.

Mount Burdell

Do You Have Faith in Something Greater Than Yourself?

Today begins the month of October.  We are clearly entering into the autumn season as the leaves turn color and the evening air has a crisp coolness that settles like a comfortable blanket as the last of the lingering dusk wanes.  Stores everywhere are bombarding us with pumpkins and cornstalks, Halloween candies and costumes, jack-o-lanterns and ghouls …all on display for purchase at almost every turn.

October also shines light on the color PINK  Those familiar pink ribbons are everywhere, visible on product labels, window displays and all over the television news as well.  Unless you live under a rock, you know that they represent breast cancer awareness.   October has long been the calendar month designated to shine a very bright light on this difficult health challenge that affects millions of people every single year.

For me, it feels a bit weird, knowing that my ‘new normal’ has made it obvious to complete strangers that I am in the throes of cancer. Head scarves aren’t really in vogue right now, so unless they suspect I’ve escaped from a gypsy caravan, their next guess would be that I’m enduring chemotherapy.

Cancer often has a way of drawing attention, and I sure didn’t want that attention to turn to sympathy.  Nope, I’m not sad.  I’m not struggling. Anyone who knows me knows that I’m a strong woman, I’m a fighter and I’m a doer.  I’m realistic and I understand that the way I choose to square off with whatever challenges come my way will have a clearly defined impact on the outcome of my journey.

No one knows what life will bring, on any given day.  But the reality is this:  life is fatal.  No one gets off the hook.

And what about the other months of the year?  There are of course eleven more of them. Do you know what health challenges those months are designated for?  I didn’t either, but I looked them up.  And the list is EXTENSIVE.  And it’s alarming, unless you have the good fortune of excellent health and are convinced that nothing will change your great luck as you motor forward throughout your remaining years.

But, should you or someone you know be facing a daunting health diagnosis that feels insurmountable, I offer you this video to watch.  It’s inspiring, uplifting and worth listening to over and over again.

In order to persevere, to thrive and to live life’s ultimate journey, I believe you must have faith in something greater than yourself, be it God or the daily sunrise that will never, never fail you.

January

  • Cervical Health Awareness Month
  • National Birth Defects Prevention
  • National Glaucoma Awareness Month
  • National Radon Action Month
  • Thyroid Awareness Month
  • National Winter Sports TBI Awareness Month
  • National Folic Acid Awareness Week (second week of January)

February

  • American Heart Month
  • AMD/Low Vision Awareness Month
  • National Children’s Dental Health Month
  • International Prenatal Infection Prevention Month
  • African Heritage & Health Week (first week of February)
  • Congenital Heart Defect Awareness Week (February 7-14)
  • Condom Week (week of Valentine’s Day)
  • Eating Disorders Awareness Week (last week of February)
  • National “Wear Red” Day (first Friday of February)

March

  • National Colorectal Cancer Awareness Month
  • National Endometriosis Awareness Month
  • National Kidney Month
  • Multiple Sclerosis Education Month (promoted by the Multiple Sclerosis Foundation and others)
  • National Nutrition Month
  • Save Your Vision Month
  • Sleep Awareness Month (promoted by the National Sleep Foundation)
  • Trisomy Awareness Month
  • Workplace Eye Wellness Month
  • Patient Safety Awareness Week (first full week of March)
  • National Sleep Awareness Week (the week before daylight savings switch)
  • Brain Awareness Week (second full week of March)
  • National Poison Prevention Week (third full week of March)

April

  • Alcohol Awareness Month
  • National Autism Awareness Month
  • National Child Abuse Prevention Month
  • National Donate Life Month
  • National Facial Protection Month
  • Irritable Bowel Syndrome (IBS) Month
  • National Minority Health Month
  • Occupational Therapy Month
  • National Sarcoidosis Awareness Month
  • STI Awareness Month
  • Sexual Assault Awareness and Prevention Month
  • Sports Eye Safety Awareness Month
  • Women’s Eye Health and Safety Month
  • National Public Health Week (first full week of April)
  • Minority Cancer Awareness Week (second full week of April)
  • National Infertility Awareness Week (last full week of April)
  • Every Kid Healthy Week (last full week of April)
  • World Immunization Week (last week of April)
  • National Infant Immunization Week (generally last week of April)
  • Air Quality Awareness Week (last week of April)

May

  • American Stroke Awareness Month (promoted by the National Stroke Association)
  • Arthritis Awareness Month
  • National Asthma and Allergy Awareness Month
  • Better Hearing and Speech Month
  • National Celiac Disease Awareness Month
  • Children’s Mental Health Week
  • Clean Air Month
  • Global Employee Health and Fitness Month
  • Healthy Vision Month
  • Hepatitis Awareness Month
  • Lupus Awareness Month (promoted by the Lupus Foundation of America)
  • National Mediterranean Diet Month
  • Melanoma/Skin Cancer Detection and Prevention Month
  • Mental Health Month
  • National High Blood Pressure Education Month
  • Older Americans Month
  • National Physical Fitness and Sports Month
  • National Osteoporosis Awareness and Prevention Month
  • Preecalmpsia Awareness Month
  • Ultraviolet Awareness Month
  • Children’s Mental Health Awareness Week (first full week of May)
  • Food Allergy Awareness Week (second full week of May)
  • National Women’s Health Week (begins on Mother’s Day)
  • National Alcohol- and Other Drug-Related Birth Defects Awareness Week (begins on Mother’s Day)
  • National Neuropathy Awareness Week (second full week of May)
  • National Senior Health Fitness Day (last Wednesday of May)

June

  • Cataract Awareness Month
  • Fireworks Safety Month (through July 4)
  • Hernia Awareness Month
  • Men’s Health Month
  • Myasthenia Gravis Awareness Month
  • National Aphasia Awareness Month
  • National Congenital Cytomegalovirus Awareness Month
  • National Safety Month
  • National Scleroderma Awareness Month
  • Scoliosis Awareness Month (promoted by National Scoliosis Foundation and others)
  • Helen Keller Deaf-Blind Awareness Week
  • Men’s Health Week (second week of June)
  • National Cancer Survivors Day (first Sunday of June)

July

  • Cord Blood Awareness Month
  • International Group B Strep Throat Awareness Month
  • Juvenile Arthritis Awareness Month
  • National Cleft & Craniofacial Awareness & Prevention Month

August

  • Children’s Eye Health and Safety Month
  • National Breastfeeding Month
  • National Immunization Awareness Month
  • Psoriasis Awareness Month
  • World Breastfeeding Week (first week of August)
  • National Health Center Week (second full week of August)

September

  • National Atrial Fibrillation Awareness Month
  • Childhood Cancer Awareness Month
  • National Food Safety Education Month
  • Fruit and Veggies-More Matters Month
  • Healthy Aging Month
  • National ITP Awareness Month
  • Blood Cancer Awareness Month (promoted by the Leukemia and Lymphoma Society)
  • National Cholesterol Education Month
  • Ovarian Cancer Awareness Month
  • National Pediculosis Prevention Month/Head Lice Prevention Month
  • Prostate Cancer Awareness Month
  • National Recovery Month
  • National Sickle Cell Month
  • National Traumatic Brain Injury Awareness Month
  • National Yoga Awareness Month
  • Newborn Screening Awarenss Month
  • Whole Grains Month
  • World Alzheimer’s Month
  • National Suicide Prevention Week
  • World Suicide Prevention Day (10)

October

  • National Breast Cancer Awareness
  • National Down Syndrome Awareness Month
  • Eye Injury Prevention Month
  • Health Literacy Month
  • Healthy Lung Month
  • Home Eye Safety Month
  • National Physical Therapy Month
  • SIDS Awareness Month
  • Spina Bifida Awareness Month (promoted by the Spina Bifida Association)
  • Mental Illness Awareness Week (first full week of October)
  • Bone and Joint Health National Awareness Week (12-20)
  • National Health Education Week (third full week of October)
  • International Infection Prevention Week (third full week of October)
  • Respiratory Care Week (last full week of October)
  • Red Ribbon Week (last week of October)
  • World Mental Health Day (10)

November

  • National Alzheimer’s Disease Awareness Month
  • American Diabetes Month
  • COPD Awareness Month
  • Diabetic Eye Disease Month
  • National Family Caregivers Month
  • National Healthy Skin Month
  • National Hospice Palliative Care Month
  • Lung Cancer Awareness Month
  • Pancreatic Cancer Awareness Month
  • National Stomach Cancer Awareness Month
  • GERD Awareness Week (Thanksgiving week)
  • Great American Smokeout (third Thursday of November)

December

  • Safe Toys and Gifts Month
  • National Influenza Vaccination Week (first full week of December)
  • World AIDS Day (1)

Fall Is In The Air And Chemo Is In My Hair

Summer is over but these blooms aren't convinced even when the afternoon sun has faded away.

Summer is over but these blooms aren’t convinced even when the afternoon sun has faded away.

Today is another beautiful day here in northern California. Sunny, clear skies as the fog has retreated back to the coast for the bulk of the day. But as the afternoon hours press on, the sun is beginning to fade and I can feel just a wee bit of a chill in the air. Our flowerbeds are still in glorious bloom, but change is coming.

And, change is coming for me as well. Chemo is clearly working, as exactly sixteen days after round one, my hair is beginning to fall. No biggie, it’s only temporary. It’s rather odd to have so much hair sitting in my hand, but I’ve been fully prepared. Waiting, almost. Wondering which would be the last day I’d feel like me when I’m out in public. If tomorrow might be the day I’ll feel like an imposter when I wear my newly purchased wig, or possibly a scarf instead.

I’ve spent the better part of the day wondering if I should just get those clippers and deputize my husband, allowing him to take charge and buzz it all off for me. But…it’s only dropping in strands.  Small groupings of 10 to 15 strands in a pass.  But it’s just a matter of days, or maybe hours, before those small groupings become small clumps…and I sure don’t want to be in line at the grocery store missing a massive clump of hair I’ve no idea has fallen off, leaving a bald spot back there that only the customer behind me can see.   AWKWARD.  What to do?  Buzz now or buzz later?  One more day of feeling like me or one less day of hanging on to something that is clearly departing, no matter my wishes for an extended stay.

It’s not the loss of hair…it’s the loss of incognito. No flying under the radar this time around. And, of course I knew that…which is why I figured I wanted all of you to hear it from me this time, not from the scuttlebutt on the street. Because, well, you know…it’s like that telephone game. Most people really do mean well, but somehow the facts just get lost in the translation from ear to ear…and by the time they get back to me, I’m already on death’s door. Don’t ya just hate that?

With each new transition from one season to the next, change is inherent. Much of it is predictable, like the drop in temperatures, the shifting skies, the gathering of winter clouds.

Some changes are almost imperceptible, they are so slow to happen. The subtle change of the leaves on the trees, the lower cast of the sun each day as earth quietly shifts its axis rotation.

With each strand of hair that falls from my head, I wonder if maybe it will grow back next time a wonderful new color…you know, like in those Clairol hair ads. Rich, lustrous locks befitting a woman of my age. No white or gray, but something along the lines of…maybe Joan Rivers blonde. She looked wonderful for her age (just a few decades older than myself)…and although I understand that was the work of many talented surgeons and hair stylists, hey…it’s not too much to ask for, is it? Or, how about Melissa Gilbert? Have you seen her lately? Gorgeous red hair. We’ve got redheads in our family…it’s not a stretch. Maybe chemo will give me hair just like hers. I could throw everyone for a loop: “I know, right? Ya, the chemo did it!”

Chemo is working…my hair is falling out. That’s the GOOD news! The bad news? Well, I’m hard pressed to find any, unless hubby shaves a Mohawk on my head. Don’t laugh. Could happen. He’s never wielded clippers before in his life.

Here’s to YOU, Joan.   R.I.P.

Life goes by fast.

Enjoy it.

Calm down.

It’s all funny.

            –Joan Rivers

Life Is Never About Just One Thing

Well, it’s been quite some time since I posted anything here.

“Where the hell ya been?” you might (or might not) be asking. Well, let me tell you. The primary reason for blog neglect was to focus on the wrap up of my original writing project, a memoir that was emotionally slow going. Remember? I told you in my intro post that it was the reason I began this blog in the first place…to encourage the ‘habit’ of writing.  I’d say that goal has been achieved…well, up until four months ago anyhow. Since January and as springtime turned to summer, not only did I have close to 50,000 words for my memoir, but my hubby and I had also managed to market and sell our home. It seemed the thing to do in the midst of a red-hot sellers’ market (but still no easy task, I might add. Feats included staging, creating a website, creating marketing brochures, and holding open houses). Then much to our delight, we sold our home (success!), held a massive garage sale, made endless trips to Goodwill, and with total serendipity we stumbled upon the home of our downsized dreams…by which time we were exhausted.

July rolled around and while we were busy unpacking a multitude of moving cartons, we realized that fifty percent of what we’d moved with us was going to have to live in the garage because there was just no place to put it. Soon it was clear a small addition to the home would be wise…so we set in motion a few contractor interviews and requested detailed write ups of our remodel scope. All this was going on while we both continued to juggle our working lives. It was a very busy and highly stressful time, when it should have been a very busy and joyful time.

The stress came from several directions. First, we sold to the buyers from hell. They were delightful up until closing day. They’d offered us a sixty-day lease back period, which we thought was great because it allowed us the time to find our next home, but in actuality it turned out to be an absolute nightmare because these people morphed into snakes in the grass. To call them incredibly brash and intrusive landlords would be a sweeping understatement.

By the time our moving van finally arrived to whisk us away, I was ready to torch the place. These buyers were so toxic that they oozed an insipid sense of creepiness throughout the property that I just couldn’t shake. My husband asked me, as we were pulling out of the driveway for the very last time, if I wanted him to stop the car and take a moment to say goodbye to the property. “No, I want to flick a match behind me, so you better just keep on driving before I absolutely do it.”

Ahhhhhh…finally with all that behind us I was really looking forward to some well deserved vacation time and ultimately getting back to my memoir. And I missed blogging. But trust me, it’s a good thing I’d stayed away from blogging or you’d all be reading about those nasty people, post after post.

So, now we’re into July, and my stress level is pretty much off the charts.  I’d had an alarming discovery just weeks earlier (while still in the throes of the lunatics who’d bought our home), and now I’ve been to see my surgeon. My cancer surgeon.

And this is where life throws a major curve ball my way.

For those of you who have an interest, I’ve created a category (in the column to the right, towards the bottom) called MY CANCER JOURNEY.  That’s where you’ll find my posts which are specific to this part of my life, and you can follow along accordingly if you so choose. I wanted to create a special spot for these types of posts so that my entire website isn’t just loaded with nothing but this topic. Because, after all, you and I both know that life is never just about one thing. (my first post is titled ‘Cancer Will Never Define Me’, and here…I’ve got the direct link for you in case you are computer challenged and can’t find that column to the right easily.  Um, Mom, I might be speaking to you here…LOL.   http://wp.me/P2dc6t-fa)     Just to be clear, CANCER WILL NEVER DEFINE ME. It might dictate a new normal, but it will NEVER define me. So, for those of you not truly interested in all this medical crap…no worries. It won’t hurt my feelings one iota, because if I could, I’d be running in the opposite direction myself.

 

 

On This Thanksgiving Eve: a reflection on cancer

Spread your wings and learn to fly!

Spread your wings and learn to fly!

On the eve of this Thanksgiving, it will be exactly ten years since I was diagnosed with cancer.  I am so blessed to have had the love of my family, the support of my friends, and the perspective that has allowed me to simply move forward, without questioning why.  It just seems to me that the ‘WHY’ isn’t all that important.  It’s the ‘NOW WHAT’  that determines where the future leads, and sometimes that too has tremendous unpredictability.

Like the skies above, life has the kind of turbulence that you can’t see coming, not with the naked eye.  As mere mortals, it’s our job to spread our wings and fly, even when a sound landing isn’t guaranteed.  I recently blogged about my own journey, and how when faced with decisions hard to fathom, I found the inner focus to simply do what was necessary to steal my own health back.

On this very special Thanksgiving Eve, I wish you all the blessings of good health, valued friendships, and a loving hand to hold onto if your life journey takes an unexpected turn.  And, most importantly,  I thank you for being my friend…I treasure each and every one of you.

Don’t Look Back

 

pathIt was startling to find, and difficult to confirm. Even though my doctor told me the imagery was clear, I knew that there was something amiss. To appease me, she sent me on for an ultrasound. I had to wait four more weeks to get the appointment, scheduled for late November. And it was there that the radiologist decided to err on the side of caution, taking six core samples to be sent off for biopsy.

Prepping my dinner table the eve before Thanksgiving, I took a call from the hospital. Pathology results were in.

It was a Thanksgiving of blessings.  Gazing at the faces of my many loved ones, I formulated a plan: take whatever steps necessary to steal my good health back.

I had surgery two weeks later, expecting eight full weeks of radiation to follow.  But pathology from surgery showed more problems…the margins weren’t clean. Malignant cells had been left behind.

Back to surgery one more time, this one scheduled for Christmas Eve.  My surgeon felt it was important to move quickly, so the holiday took a back seat.

Christmas Day was a day of blessings. Looking at the faces of my children gathered around me, I saw the road ahead with acute clarity. I expedited the healing process.

New Years Eve I took at call in the last hours of daylight.  My surgeon identified herself by her first name.  It took me a moment to understand, but then in an instant, I got it.

My husband wasn’t yet home from work, so I reached him on his cell phone to suggest we meet up at a local spot for a festive drink together.  Let’s ring in the New Year a few hours early, I suggested.

The pub was packed with revelers, all in good cheer as they sat at tiny tables sharing appetizers and raucous laughter together.  Spotting a quiet corner, I grabbed a newly vacated table for two and waited for his arrival.

His eyes lit up when he spotted me.  We spent two hours talking about a thousand things, as we’d always done throughout our twenty-five years of partnership together. I waited until he was finishing his third glass of wine before I broke the news.

With an incredulous stare, he struggled to retain emotional control. I reached across the small table and held his hands firmly in my own. Listen to me, I said.  I’ll get through this.  It’s doable…it’s just body parts. I can live without body parts.

Sometimes the most unexpected journeys teach you the most profound lessons.  For example, if you simply keep your eye on the horizon, you can travel just one day at a time. By doing so, statistics on travel time become irrelevant because the only timeline you’re on is the one you choose to manage.

The horizon is always there…just waiting for you to arrive, no matter how long the journey. Don’t look back and most certainly don’t look down.

 

 

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