#lifer

05/17/2017

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

06/02/2016

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

07/08/2015

#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.