Yes, and

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But, is it?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings to you all, dear friends.  xo

#LiveTheDash

 

 

 

Trick or Treat?

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

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

That’s all complete crap.

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

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

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

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

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

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

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

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

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

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

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.

 

 

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.