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

Don’t Be Scared, Okay?

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

So here it is.

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

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

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

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

My last appointment of the day: echocardiogram.

And here’s how it went down:

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

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

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

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

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

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

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

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

“And you don’t know it?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Borderline? Borderline normal?”

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

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

Ya. Right

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

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

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

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

Shit.

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

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

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

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

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

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

Damn it. I have pneumonia.

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

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

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

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

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

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

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

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

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

Three R’s

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

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

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

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

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

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

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

Which brings me to the second R word.  Radiation.

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

Remission and Radiation.         Radiation and Remission.

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

RELIEF.

One Singular Word.

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

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

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

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

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

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

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

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

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

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

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

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

Mount Burdell

Jingle Bells, Cancer Dwells

jingle bells

JINGLE BELLS, CANCER DWELLS

CHEMO ALL THE WAY…

OH, WHAT FUN IT IS TO HIDE

IN A WIG THAT’S ‘TINA FEY’, HEY!

JINGLE BELLS, HOLIDAY SPELLS,

SIDE EFFECTS GONE AWRY.

FINGERS AND TOES, CAN’T FEEL THOSE,

AND MY NAILS ARE GONNA DIE.

TASTE BUDS ALL BUT DEAD,

NOT ONE HAIR ON MY HEAD,

A CONSTANT RUNNY NOSE,

AND THAT’S NOT ALL OF THOSE…

EYES THAT WATER NON-STOP,

RASHES THAT BURN AND POP,

WEIRD STUFF THAT KEEPS HAPPENING…

IT’S ENOUGH TO JUST YELL “STOP!

Ohhhhhh JINGLE BELLS, HER-2 CELLS

MUTATING RIGHT ALONG.

YOU CAN’T FOOL ME,

‘CAUSE I’M ON IT, SEE?

BANISH YE! BE GONE!

CANCER SUCKS,

BUT LIKE THE OREGON DUCKS,

I’M FIGHTING FOR THE WIN.

AND WHATEVER IT TAKES,

I’LL NAVIGATE…

BECAUSE YOU CAN COUNT ME IN.

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

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

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

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

DASHING TO THE LAB,

FINGER POKED WITH A STAB.

LAUGHING ALL THE WAY

AS BLOOD COUNTS SWING AND SWAY.

BELLS ON CHEMO BRAIN RING,

MAKING SPIRITS BRIGHT.

IT’S A TRICK TO NAVIGATE

THIS JOURNEY I’M ON, EVERY NIGHT.

 ♦

Ohhhh, JINGLE BELLS, CANCER CELLS

LURKING ALL ALONG.

CAN’T FOOL ME!

I’M ON IT, SEE?

BANISH YE! BE GONE!

 ♦

CANCER SUCKS,

BUT LIKE THE OREGON DUCKS

I’M FIGHTING FOR THE WIN.

WHATEVER IT TAKES,

I’LL NAVIGATE…

‘CAUSE YOU CAN COUNT ME IN!

 ♦

VIEW FROM TOP OF OUR PROPERTY

 FROM OUR HOME TO YOURS, BLESSINGS THIS HOLIDAY SEASON!

When Life Throws a Curveball, Reposition the Mitt

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

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

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

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

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

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

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

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

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

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

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

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

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

Do You Have Faith in Something Greater Than Yourself?

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

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

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

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

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

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

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

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

January

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

February

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

March

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

April

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

May

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

June

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

July

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

August

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

September

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

October

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

November

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

December

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

Ports, Portia and Hoofing It Forward.

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

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

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

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

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

“It goes directly into your heart.”

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

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

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

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

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

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

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

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

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

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

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

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

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

But I digress…

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

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

But, I digress yet again.

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

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

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

I GOT THIS.       I SO GOT THIS!

gypsy look

 

 

Fall Is In The Air And Chemo Is In My Hair

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

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

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

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

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

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

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

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

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

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

Here’s to YOU, Joan.   R.I.P.

Life goes by fast.

Enjoy it.

Calm down.

It’s all funny.

            –Joan Rivers

Life Is Never About Just One Thing

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

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

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

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

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

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

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

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

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

 

 

On This Thanksgiving Eve: a reflection on cancer

Spread your wings and learn to fly!

Spread your wings and learn to fly!

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

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

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

Don’t Look Back

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Here On Earth With You

Picture 2This evening I was cruising around on WordPress, reading blog posts by other writers. I stumbled across a post that especially caught my attention, titled The Cancer Book. It’s written by the wife of a cancer patient.  Her personal anger and emotional fragility are all too familiar to me.

I’ve walked that same path alongside loved ones battling cancer.  And, I found myself providing comfort to my husband as he walked that path beside me while I myself battled cancer.

That was almost 10 years ago now…but the journey is as fresh in my mind as if it were just yesterday.  After reading her post, which detailed the anguish of having to purchase a notebook to help her keep all cancer-related paperwork together, I decided to leave a reader comment.  I told her what I tell everyone who asks about my own cancer journey;  keep your eye on the horizon and take it just one day at a time.  Don’t stress over the weeks/months ahead.  Just keep your eye on the horizon, stay steady and take it day by day. Only one day at a time.

Here On Earth With You is a poem I wrote early in my cancer journey, when it became clear that the best chance I had for survival  was not going to be the 8 weeks of radiation I’d been told would follow the initial surgery.  In my wildest dreams, I’d never expected to face the kind of battle strategics that cancer served up.  Too many trips to surgery in a matter of weeks, and then the final surgery was a drastic one. It left me with no choice but to be reminded, on a daily basis, that my life was in exchange for body parts.

For me, it’s been easy to keep it in perspective.  It’s just body parts.  Living isn’t about body parts, it’s about HEALTH.

I hope the blogger who wrote about her cancer book can soon write about the joy of celebrating with her husband over his renewed health.  Life is so unpredictable, but here on earth is where I hope he will remain for decades to come.

The sunshine’s warmth upon my skin on a brisk autumn day

brings good feelings to my heart,

for I know it’s nature’s way.

The sobering news of malignancy brings clarity to mind

for appreciation of battle,

of facing moments in time.

The smile on my children’s faces, no matter what their age

and the way their warmth envelops me

in every single stage.

Their laughter and their triumphs, their special little ways

that make me feel so blessed

with each passing day.

The joys I share in marriage, our love endures the years.

The support we share for each other,

no matter what the fears.

The way he looks so pensive, lost in thoughts of distress–

The way I reassure him,

our tomorrows will be the best.

I step up, front and center, to see how the facts unfold

and I face what lies before me,

choosing what the future holds.

Decisions hard to fathom, in order to pursue

a lifetime of more love,

here on earth with you.

Picture 3Blessings to all who have their own cancer journeys to endure.

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