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

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

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.

#Lifer

Pain woke me up in the middle of the night just a few weeks ago. Pain in my right thumb to be exact. At the base, where it connects to my hand, specifically in the ligament. And it was bent at the top joint, as if I’d been pressing a stopwatch for my entire life. Frozen in place, I couldn’t UNbend it… without using my other hand. And when I did that, there was a pop.      Whoa.

So I purposely bent my thumb to test it…you know, just to see if I could bend it without any aide from my other hand.   Just to see if I could do it. And, thank heavens, I could.

But then I couldn’t straighten it out again. Whaaaattttt?

I focused harder. I willed myself to straighten my thumb. I took a deep breath and concentrated really hard, like I used to when I was a kid and thought there was legitimacy to the game of Ouiji.

It didn’t matter how hard I concentrated. I could not straighten my thumb.

I looked at the clock. 3:17 a.m. I briefly debated about waking up hubby since I was so oddly fascinated in a baffled sort of way. But I decided to simply use my other hand to straighten the damn thing out. Another pop. I searched for a cold spot on the pillowcase that would mask the throbbing pain, and then I debated about climbing out of bed to take some Advil. Instead I sighed deeply, prayed this was a bizarre dream that I wouldn’t remember by morning, and I eventually fell back to sleep.

Morning came. My thumb was frozen in a bent position once again. And my other fingers felt… well, they felt peculiar. On both hands, my fingers felt stiff and achy, like they could just as easily get into a locked position as well.

I glanced over at hubby. “Look at this!” I muttered with annoyance. He was barely awake and showed no interest. So I muttered a bit louder. “I cannot unbend my damn thumb.” He turned to glance at it. Then he moved closer to inspect it. Then he straightened it for me. It popped.  “Hmmm,” he said in sympathy.

It can be downright depressing when I dwell too long on my ‘new normal’. I try very hard not to, and for the most part, I’ve been successful and keeping those thoughts at bay. Since I last posted a health update here (three months ago), I’ve lost three women from my life. One was a personal and longtime friend to my mom, whose cancer had returned after a very long  hiatus, like fifteen or twenty years. She and I became close after my diagnosis last year. She reached out on multiple occasions to cheer me on in my own journey and to compare notes. Our paths paralleled for a bit throughout our chemo treatments, which were similar in their drug side effects. She didn’t know anyone else going through this battlefield, and I know it brought her some sense of comfort to be able to express her thoughts about it to me, someone who’d been a comrade of sorts.  But she lost her battle just a month or so ago.

The other two were women that I came to know through an online cancer support site (specific to my bizarre diagnosis). Of those two, the first one was a complete shock, as I’d had no idea how advanced her cancer had become in a very short time. She was one of the first to ‘welcome’ me to this online group, to reassure me that she was there to support me in any way she could. The second one was an even bigger shock, as she received her diagnosis just one month before I received mine. She began her treatments three weeks before I began mine…and it turned out that we had the EXACT same treatment plan. Same four drugs to start with, at the same intervals for the same duration in time, followed by the same amount of radiation over the same number of weeks. Her body did not handle the drugs well, and within weeks of completing her radiation, her cancer spread like wildfire to her brain. So they radiated her brain every day for a month. And then she died shortly after that.

Her death rattled me to my core, and put me in a funk for days. Having never met her in person, we’d shared quite a bit of ourselves with each other through social media. She lived in Kentucky. She was a horse owner, I’d been a horse owner. She was raising a teenage daughter, I’d raised a teenage daughter. She was spunky and encouraging. I was encouraging though not so spunky. She believed deeply in Jesus. I believe less deeply in God. She was a young forty-something and I used to be a young forty-something.

She was a lovely woman. She was a fighter.    And she was far too young to die.

Treating cancer (including early stage) with surgery, even mastectomy, and/or radiation and/or chemo does NOT guarantee a cancer-free future. Cancer has no age restrictions, no rhyme or reason to whom it victimizes. Recent studies have claimed it’s not lifestyle or diet related. It’s not even genetically related.  It’s simply science. And bad luck for those of us navigating this stealthy beast.

A woman named Holley Kitchen has posted a very emotionally moving video to Facebook in an effort to EDUCATE the general population of the world about those little pink ribbons, and it’s gone viral. It’s a concise explanation for those who are clueless (and that would be MOST people) about what ‘metastatic breast cancer’ really means. The net of it is: for those whose breast cancer has marched on to a new location from where it originated…they will never, ever, Ever, EVer, EVER, E V E R …be cured. The odds of an initial breast cancer becoming metastatic are 20-30%, according to the Metastatic Breast Cancer Network.  Metastatic Breast Cancer is an umbrella term for an entire RANGE of unique and incredibly complicated  breast cancer diagnoses. Mine happens to be a diagnosis that involves a gene mutation, which happens in only about 20% of patients.

Metastatic breast cancer is terminal (I keep my focus on the fact that LIFE is terminal). These people (and that would include me) will live for the rest of their lives, whatever time is left for them individually, always fighting the fight, and in need of lifelong medical care. Cancer might go into remission, but the emotional weight of unfathomable worry will never vacate.

Holley Kitchen has coined the term LIFER.  It’s a club for members only, and I wish like hell I weren’t a part of it.  I pray that none of you become a part of it, and if you are, my hope is that you are living life without looking back, and focusing on the joys and comforts that already surround you.

I typed into Google: I can’t straighten out my finger.   It was all over the internet. Trigger Finger. It’s an actual condition CALLED Trigger Finger. Jeez, if I’d known I’d be getting this, I’d have spent more time in recent years at the shooting range. I’m a good shot. Or I used to be when I was at the range. Dad taught me how to shoot when I was a kid. Once he’d figured out I was left eye dominant, he adjusted his instruction accordingly.   It actually saddens me to admit that this trigger finger is from my damn cancer drugs. Nothing to do with my firearm skill set.

So these cardio toxic drugs I get every three weeks, which I refer to as my sniper drugs, have affected my heart. I wrote about that three months ago, in my last post here, titled ‘Don’t Be Scared, Okay?’ I had to skip a round of treatment in hopes my heart muscle would rebound.

It didn’t. But the next follow-up echocardiogram showed that that my heart muscle didn’t get any worse either, so my oncologist resumed my treatments with the approval of my cardiologist. Like clockwork, I go in every 21 days and they hook up Portia with the IV. The nurses there have asked me on three different occasions to speak with other patients who were in need of chest ports. All three were scared and concerned about the surgical procedure, and curious about the placement and comfort. One was a young man in his twenties, another a woman in her seventies, and the last one was a woman in her fifties. I’m always happy to reassure others, but find it difficult when they ask how much longer before I get to have my Portia removed. It’s a question I’ve not yet found a comfortable answer for.

“I’m in it for the long haul,” I say. Their eyes widen, but I don’t offer much explanation aside from the fact that every cancer diagnosis and treatment plan is unique, and not to base the need for a chest port on the prognosis of their diagnosis. It’s solely for ease of access to their arteries while getting drug infusions.

Next week, I’ll get yet another echocardiogram, which will determine if my heart is continuing to hold steady or if the heart muscle has deteriorated further. IF it’s deteriorated further, again treatment will be suspended. Possibly a new treatment plan will be discussed, but I’m hoping not, because the treatment plan I’m on is THE best of the best for my specific and rather unusual diagnosis.

I’m experiencing excessive worry on occasion, but not for myself.   I’ve been so ridiculously busy with house guests, work and other activities that have kept me fairly well distracted, but every now and then, well, okay, DAILY, I am obsessed with tracking (via the use of an online GPS system) the exact location of a 72’ sailboat. It’s called the Sea Dragon, and at this very moment it is literally in the middle of (nowhere) the North Atlantic Ocean…as it sails from Bermuda to the Azore Islands, quite a ways off the coast of Portugal. Picture a single grain of sand floating in the midst of the wide wide wide open sea.

Why am I obsessing over that? Because my daughter is on board, crewing for an organization called Pangaea Explorations. They use the Sea Dragon to take teams of scientists all over the world to study issues that are ocean related.

This current group is studying the issues of plastics in the North Atlantic Trash Gyre (North Atlantic Garbage Patch), using a unique trawl built specifically for this expedition in an effort to determine the depth below the surface of the water where the trash has gotten caught within the ocean gyres. It’s a leading edge technology that’s literally unfolding right at this very moment, and I can only imagine my daughter’s excitement to be so intimately involved in this part of the research process.

But this mother has never experienced anxiety (okay, WORRY) quite like this before. While she’s out there trawling in the middle of… nowhere, I look at the sky and I pick out a star. I wonder if she’s able to see what I see. And I want to be able to text her to say : You see that star up there? Make a wish for me, okay? And then get on home so I can get my arms around you!

Trawling. The sniper drugs, before going in for the kill, trawl for a specific gene mutation which causes my cancer to proliferate. They’re called targeted drugs because they leave the good cells alone but trawl for the deadly mutant ninjas.  Boy, I hope my compromised heart can take it…I don’t want to lose my sniper drugs. I’ll happily deal with trigger finger so long as my sniper drugs can stay on the job.

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

Jingle Bells, Cancer Dwells

jingle bells

JINGLE BELLS, CANCER DWELLS

CHEMO ALL THE WAY…

OH, WHAT FUN IT IS TO HIDE

IN A WIG THAT’S ‘TINA FEY’, HEY!

JINGLE BELLS, HOLIDAY SPELLS,

SIDE EFFECTS GONE AWRY.

FINGERS AND TOES, CAN’T FEEL THOSE,

AND MY NAILS ARE GONNA DIE.

TASTE BUDS ALL BUT DEAD,

NOT ONE HAIR ON MY HEAD,

A CONSTANT RUNNY NOSE,

AND THAT’S NOT ALL OF THOSE…

EYES THAT WATER NON-STOP,

RASHES THAT BURN AND POP,

WEIRD STUFF THAT KEEPS HAPPENING…

IT’S ENOUGH TO JUST YELL “STOP!

Ohhhhhh JINGLE BELLS, HER-2 CELLS

MUTATING RIGHT ALONG.

YOU CAN’T FOOL ME,

‘CAUSE I’M ON IT, SEE?

BANISH YE! BE GONE!

CANCER SUCKS,

BUT LIKE THE OREGON DUCKS,

I’M FIGHTING FOR THE WIN.

AND WHATEVER IT TAKES,

I’LL NAVIGATE…

BECAUSE YOU CAN COUNT ME IN.

HO HO HO!   Well, it’s been a long stretch of silence on this blog, five straight weeks. During much of that time, I’ve had to lay low. Not because cancer has tripped me up, but because something as simple as the common cold seized me in a way that made me think I was in the grips of the Christmas Grinch.

It wreaked so much havoc that it depleted my energy to the point where I was mostly useless. Sure, I understand that cancer drugs reduce my ability to fight off infections and even the common cold can be monstrous…but the timing on this was just downright rotten. It stole precious time from me that I wanted to be able to spend with my daughter, who isn’t home much throughout the year. She arrived to spend time in between jobs, and for three of the four weeks she was here, I was sick. Too sick to do ANYTHING but hang at home and rest. Boy, it was so frustrating for me.

She arrived the day before my fourth round of chemo, and kept me company as I sat in the infusion chair for almost four straight hours. She took it all in, observing the somber mood of those around us, noting that one in particular must have been close to her in age, and far too young to be dealing with cancer and chemotherapy.  She stayed close, and watched as the drugs dripped their magic into my Portia.  Three weeks later, she came along with me to my fifth chemo (which I coughed incessantly throughout).  That happened to be the day before Thanksgiving, which meant that I couldn’t eat much on Thanksgiving Day, which really wasn’t a problem since I can’t taste anything anyhow. But our family was together for our first holiday in our new home, so that in and of itself was very special. There were eight of us: both our boys, their wives, our grandson (who, at two and a half years old, is already a great spirit booster), and of course our daughter.  The weather was wonderful and we spent time playing a family round of golf using rubber golf balls and hitting to pins that hubby and sons set up all over the property. Then there was a brief game of lacrosse that followed.   It was a Thanksgiving wrapped in blessings. We’ve always been a close knit bunch, and I’ve never taken that for granted. Our great fortune has been that we’ve somehow managed to raise three children that have found their wings and soared. It’s every parent’s dream, and knowing that our dream has been realized brings a joy that knows no bounds.  I ask you, what more could a parent want?

It was a weepy farewell as children returned to their far away homes at the end of the holiday weekend.  Chemo round six is coming up on December 19th …just in time for the Christmas holiday.  And that leaves me thinking that this song needs just a brief second verse:

DASHING TO THE LAB,

FINGER POKED WITH A STAB.

LAUGHING ALL THE WAY

AS BLOOD COUNTS SWING AND SWAY.

BELLS ON CHEMO BRAIN RING,

MAKING SPIRITS BRIGHT.

IT’S A TRICK TO NAVIGATE

THIS JOURNEY I’M ON, EVERY NIGHT.

 ♦

Ohhhh, JINGLE BELLS, CANCER CELLS

LURKING ALL ALONG.

CAN’T FOOL ME!

I’M ON IT, SEE?

BANISH YE! BE GONE!

 ♦

CANCER SUCKS,

BUT LIKE THE OREGON DUCKS

I’M FIGHTING FOR THE WIN.

WHATEVER IT TAKES,

I’LL NAVIGATE…

‘CAUSE YOU CAN COUNT ME IN!

 ♦

VIEW FROM TOP OF OUR PROPERTY

 FROM OUR HOME TO YOURS, BLESSINGS THIS HOLIDAY SEASON!

When Life Throws a Curveball, Reposition the Mitt

Screen Shot 2014-11-01 at 11.34.47 PMMadison Bumgarner, Buster Posey and every single one of our San Francisco Giants have proven that the impossible isn’t so impossible after all. It’s what you believe you can do, regardless of what the odds are. Winning their third World Series in five years was the epitome of focus, grit and a sheer determination personified by those who really understand what the game is all about. They left it all on the field.

It’s been a busy few months. It’s hard to believe that I’m just one week away from my fourth round of cancer drugs. So, here’s the update for those of you interested to follow along.

Portia and I are getting along just fine. My golf game hasn’t been compromised at all, and if anything, maybe it’s improved just a bit. I played 9 holes just the other day, walking the course, surprised at the great golf shots that somehow were catapulted off my club heads. It was a day to enjoy with my golf buddies, and a stretch of several hours where I could simply enjoy the fresh air, exercise and camaraderie of those who also love the crazy little sport that drives most men crazy. I especially love when I can feel rather like my old self, temporarily forgetting about my ‘new normal.’

Not that it’s been bad…it hasn’t. Sure, the drugs have some side effects that seem to be more prominent in the first week or so after treatment, and then suddenly on about day ten, they dissipate. But they are manageable. With each visit to the oncologist I feel blessed, especially when I look around at others getting chemo on the days I’m there doing the same. It’s a somber place. I don’t do somber very well.

I’m out and about most every day even when I’m feeling less than stellar. I’m resting when I feel my body telling me to ‘chill’. I’m keeping pace with work and all of my clients, who tell me how wonderful I look.

I know I look like a complete imposter in that silly wig, or like an aging gypsy with one of my many new scarves. I just suck it up and motor onward. Because that’s what stealth survivor’s do. We don’t waste time dwelling on the stupid stuff. We focus on the priorities. Hair? Overrated.

I silently chuckle as everyone compliments my clear complexion. They think it’s the drugs. Newsflash: my complexion has always been clear. Obviously no one ever noticed before I lost my hair to chemo. So, I’m thinking that when (and if) my hair ever grows back, I may just keep it super short. I think that may be the more flattering look.

My oncologist is very pleased I’m doing so well. Last time I saw her, she remarked about my ‘wonderful attitude’. Her bedside manner isn’t all that fuzzy, but I’m not there for her personality. I have noticed a rogue smile sometimes escapes her when we chat about my progress. And it shows up again after I give her a departing hug of gratitude when our time is up…an awkward moment for her I think. “Sorry, I’m a hugger,” I told her this last time. Then I quickly made a mental note to not hug her next time. I’m so appreciative of her careful oversight and management of my challenging situation, that I instinctually reach to give her a departing hug. She’s Head of Oncology and Hematology. I think hugs are probably off limits at that level. Really, I need to stop.

Yesterday was my nadir day…the day when my blood counts are at their lowest, always two weeks post chemo. I go in each nadir day and get my blood work done. After a finger poke, the blood gets squeezed into a little tube and inserted into a machine that spits out a complete blood count within minutes. Nancy, my assigned oncology nurse, reviewed the test results with me. And we spoke about my progress with the side effects, followed by a quick weigh in and physical exam. She too was delighted to see me doing so well overall. “It’s your healthy lifestyle,” she said. “And her great attitude,” hubby chimed in.

Whatever it is, I’m thankful. Personally, I chalk it up to hitting the ground running. I was perfectly healthy at the time I was diagnosed.  I wasn’t run down, fatigued, or compromised in any way. I was playing GOLF for God’s sake. I may have been challenged, but I was NOT compromised.

Who knew that this surreal and bizarre turn of events would be such a complete and total game changer?

But that’s life. When an unexpected curve ball comes barreling across the plate, you’d better be a damn good catcher. Because whether it’s thrown by Madison Bumgarner or by the very essence of fate, there’s no time to do anything but reposition your mitt.

That’s all I’ve done. I’ve repositioned.       BRING IT.

Ports, Portia and Hoofing It Forward.

Portia was a champ for her inaugural run today!  (For those of you just stepping in to my journey here, ‘Portia’ is the name I’ve given to the chest port that was surgically placed inside me  just two days ago.  Because I will be getting drug infusions for a very long time (‘indefinitely’ according to my oncologist) on a schedule of every three weeks like clockwork, a chest port is necessary because without one, the veins in my arm would become collapsed quite quickly making it very difficult over time to find a vein to use for needle insertion that will deliver the drugs via intravenous drip.  The port itself a triangular shape and thicker than I expected it to be.  It is typically placed beneath the skin just below the collar bone.  Because the port has raised bumps on each of the three corners, once implanted the nurses can feel for those three bumps and know where the center of the port is for insertion of the needle.

At my pre-op appointment with the surgeon, who looked ridiculously young with an over-sized mug of a half downed and likely cold cappuccino sitting on her desk, she explained all of this to me by showing me exactly what the port looked like. She had one handy sitting on her desk.  I could touch it and fiddle with it (right after I picked it up off the floor because I immediately dropped it in my clumsy attempt to hide my shock that it was PLASTIC. Plastic?  Ten years ago after my bi-lateral mastectomy, I opted for no reconstruction because I didn’t want anything foreign in my body.  Good grief.)

“Plastic?” I asked her with an unrecognizable chirpy voice.  She just smiled and said there were ports made of metal, like titanium, but those would prohibit me from getting accurate MRI’s and other scans medically necessary down the road.

Ohhhh. Well, then.  Plastic it is.  And the color purple is nice, a lovely easter shade.  Are there any other color choices? I wanted to ask her, but I decided not to sound stupid after that chirpy voice had just come out of my mouth.

So, instead I asked “Where does it connect inside?”   Given that they stick needles into arm veins when there is no port available, I was curious to know what vein lives inside my chest  that they’d connect this purple plastic thing into.   It was an answer I wasn’t anticipating.

“It goes directly into your heart.”

HOLY SHIT!  MY HEART?     My…. HEART???

Now, if hubby had been with me, I’d have grabbed his arm and likely squeezed it to a size substantially smaller.  But hubby was away on a trip I insisted he not cancel…a reunion of his high school football team that he’d organized and planned for almost two straight years. I knew this reunion was hugely important to him.   Fifty years ago his team went undefeated two years in a row, winning their conference championships both years (they didn’t have state playoffs back then.)  In Ohio, football is a big deal…so he flew back to the little town of Aurora where he grew up and connected with these guys who he’d grown up with.  Some went on to play pro after college.  My hubby went on to become an All American in lacrosse, having never seen a lacrosse stick until he was a freshman at Denison University.  These guys are all hard core athletes…the reunion was a three day event, the high school rolled out the red carpet for them, and teammates came from far and wide to be there.  I desperately wanted hubby to go, and  have a reprieve from this cancer shit…because it affects him in a deeply emotional way  that only devoted hubby’s would understand. So, at my insistence, he went.  Which is why I was solo in the surgeons office that day.

As all physicians do, she began to explain the risks of this surgery and as she went on, the color began to drain from my face.  “It’s a confined space there without much wiggle room.  There’s a possibility that I could puncture your lung. But, don’t worry!  The hole heals up in about an hour or so, and we’d just give you oxygen in the meantime until its closed.”

Once I found that chirpy voice again, I asked about risk of infection.  Overall the risk is low, but she of course had to divulge all risk factors, which she did quite well. Please oh please let Portia not get infected, I prayed to myself.

Then I asked about exact placement.  Turns out I had choices…as long as there was a flat surface behind it, it could really go anywhere.  But I had to keep in mind accessibility and comfort.  Typically just beneath the collar bone, but she could try to move it to where it wouldn’t interfere with my wardrobe necklines.  I made sure she understood that I was only concerned about my golf swing.  “Are you right or left handed?” she wanted to know.  After I told her I was right handed, she was pleased because she didn’t want to put it on the right side anyhow because that’s where my cancer was surgically removed seven weeks ago.  They try to avoid cancer locales.  I stood up and demonstrated my swing in an understated way.  Hmmm, not real sure about placement on the left either…could be in the way.         No matter…my game isn’t great anyhow.  Maybe Portia would balance my swing out better.

Then I asked how long one of these things would really last. That was my very last question, because the answer left me so rattled, I was weepy on my drive home.  “The longest one I’m aware of was over seven years…but the cancer outran the patient by then.  The port was still working great though.”

I left her office only to find all elevators out of service. A medical building with ALL elevators out of service?  Her office was on the sixth floor, so I hoofed it down the stairs trying to find the lobby.  But the door below the 2nd floor was the basement.  Where the hell was the lobby?  The lobby IS the first floor. What the hell?  So, I hoofed it back up a level.  Nope…second floor.  I hoofed it back down a level.  Nope the basement.   God damnit!  I want OUT of this building.  So while I was fuming, the elevator door in the basement suddenly burst open with a crowd inside packed like sardines.  I pushed my way in.  The button for Lobby was illuminated.  When the doors closed and the elevator lurched upward, I prayed.  I’m not a religious person, but I prayed anyhow.  And before I knew it the doors burst open once again, and there was the lobby.  All of us raced out like a stampede at record speed.  I then was focused on finding the machine where I could prepay my ticket for the garage.  I looked everywhere.  Unable to find it, I asked someone nearby.  “Do you know where the prepay machine is for the parking garage?”

“I think its by the elevators inside the garage.” he said.  Great those damn elevators…all broken, including the garage elevator from the lobby. So, I walked outdoors and stepped over the construction barricade that was to have blocked my way to the most direct route to the sidewalk. Once there, I walked briskly to the garage entry where cars drive in.  There was thick tape strung there too with ‘WET PAINT’ signs hanging on it,  blocking my way to the low concrete median that separated incoming and outgoing cars.  I stepped over that and stepped onto the bright fresh yellow paint job.  Then I had to think about the fastest route down to seven levels below me where I parked my car in the space apparently meant for deep subterranean termites.  I got there by using the ramp that cars drive to climb out of the depths of darkness back up to street level…so I was actually hoofing it against traffic.  NOT fun.  Finally I made it all the way to the bottom level and headed to the elevator where two people waiting there instantly asked me if the elevators could possibly be broken. “Yes, they are…happy hiking!”  I glanced around for the prepay ticket machine.  Nothing.  So I asked these annoyed people who’d been waiting too long for an elevator that wasn’t coming if they knew where the machine was.  ‘In the lobby of the medical building behind the pharmacy door,” they said.  Well, SHIT.

I hoofed it back up those damn ramps, leaving them in the dust as they tried to stay with me.  I barreled back across the wet paint, jumped to the sidewalk, leaving yellow footprints as I went, and burst back through the construction zone.  Inside the lobby once more, I was winded.  And ready to cry.  I went to the pharmacy and looked behind their door.  No machine.  I walked up to the register in the back and asked.  “Oh, they moved it just to the left of  the construction barriers  blocking access to the broken elevators.  It’s hard to see, really.”

Back to the broken elevators, I followed the construction wall and peeked around the corner.  BINGO. Got my credit card out, paid for my parking and raced back outside.  Now there were construction GUYS there…so I took the handicap ramp instead to the sidewalk below, ran back through the yellow paint, down the seven ramps of  garage hell, and got into my car.  Where I sat and sobbed.  For about five minutes.

Then I chastised myself and started the engine.  Chevy Tahoes weren’t meant for these stupid old garages…I ducked my head every time I had to drive in one, certain those low concrete ceilings would sheer off the top of my Tahoe (and me). After carefully navigating my way to the exit with the precision of a finely threaded needle, I at last got to the gate where two cars were ahead of me.  I saw the first driver in line put their ticket into the machine that opened the gate immediately…they drove off.  Then the car ahead of me dropped their ticket trying to feed it into the machine.  They had  to open their door and retrieve it.  They tried again.  Success.  But the gate didn’t  open.  The ticket was spit back out.  They inserted it a second time.  The gate didn’t open.

Wide eyed, I sat there staring.  Then I could see the driver lean out further, seemingly talking to no one…so figured there was someone on the intercom inside the kiosk where normally a parking attendant would stand, telling them what the problem might be.  FIFTEEN MINUTES later, I gently honked my horn.  The driver stuck his head back out the window, looking directly to me and demanded I not honk at him.  What’s going on up there? I asked kindly…well, as kindly as I could manage.   Turns out, he couldn’t find the prepay machine, and so the voice on the intercom was running the credit card numbers from some unseen location.  ARGHHHHHH.  Another five minutes later, the gate finally swung up to let the guy drive out.  Adios! 

I drove up, fed my ticket in and the gate swung up immediately.  I left a bit of rubber as my lead foot hit the accelerator.  Traffic in the city was heavy for mid-morning hours, but I cranked up the radio and focused on meditating as I inched along.

But I digress…

The surgery itself was easy…outpatient, and I was given a ‘local’ type of anesthesia, but don’t remember one thing once they started the drip. Next thing I knew, I was in recovery.  No oxygen and  no nausea from anesthesia.  Major relief!

On our way home from the hospital just an hour after I woke up,  hubby and I stopped for a late day breakfast at my favorite spot in Sausalito.  We’ve been regulars there for 16 years. I get the exact same thing EVERY time…the ‘veggie storm’ scramble with fresh fruit instead of hash browns, and an English muffin. Typically I’d get their vanilla latte too, but I’ve walked away from those for awhile…without taste buds, its rather a  frustrating waste on me now. I look forward to that breakfast once a week with great anticipation.  Wonderful local spot, wonderful owners, and simple good food, although I couldn’t vouch for much other than my Veggie Storm.

But, I digress yet again.

So TODAY, Portia (newly installed just a mere 48 hours ago) and I sailed through the infusion process in fine form, just as I did without her three weeks ago.  It was all pretty much the same in terms of the drug line up…first a bag of anti-nausea drugs, followed by the two chemo drugs dripping one after the other, followed by the two gene specific targeting drugs (also administered one after the other), followed by Heparin to prevent blood clots that are a potential risk of infusions.

THEN Portia was released of the IV needle  (pain free, I might add…both going in and going out), and then I was given a shot of Neulasta…which is to ensure I produce more white blood cells over the next two weeks, because all those drugs will cause the white blood cell count to drop very low…as happened after my last infusion three weeks ago.  So low in fact, that they delayed my port surgery pushing it back two days due to high risk of infection.  They quickly got me an injection of Neupogen which boosted my white blood cell count quickly over a matter of days, confirmed by yet another blood draw… and surgery took place at long last. It all worked out just fine, even though it was an unexpected delay.

I’m feeling well, I’m feeling strong, I’m not looking back and I’m thankful I’m in very caring and capable medical hands.  I have the best team.  THE BEST.  My nurse today was delightful, young and actually knows my daughter…from the small world of competitive sailing.  We took a selfie, me in the infusion chair with nurse smiling broadly behind me.  I texted it to my daughter….gotta love this age of instant communication! I’d post it here, but my Portia might scare a few of you in her raw appearance, and quite frankly, next to adorable nurse, I don’t look so hot.  So instead I’ll post a photo of my gypsy-esque attire that I wore on my noggin today.  I get a bit cold sitting in that infusion room for hours on end, so I didn’t want my head to be cold too.  The receptionist was lovely to compliment my new look.  Yup…it’s my new normal.  No biggie.

I GOT THIS.       I SO GOT THIS!

gypsy look

 

 

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.