Tuesday, June 24, 2014

Remembering a Long, Beautifully Imperfect Life


Nine months shy of 90 years old, my paternal grandmother died this afternoon.

In a seven month period marked by cancer death after cancer death, her death marks the only one that ‘makes sense’ to me.

In fact, of the almost two handfuls of people we have said goodbye to in the recent past, she is the only one who, in my opinion, really died. The rest were killed. Mostly by cancer.

My grandmother had 10 children. She was raised in a big Italian Catholic family and she and my grandfather created their own big Italian Catholic family. She and my grandfather (who died just over 20 years ago) were not perfect parents but they did the best they could to feed, clothe and educate all ten. Every one of her children has gone on to create their own familial units and she has quite the gaggle of grandchildren and great grandchildren.

My brother and I were the most remote geographically so my interactions with her were mostly limited to summer vacations and a few trips I took as a young adult. And letters. We wrote real, live, paper letters to one another. When we did gather together, it was usually for a wedding. As the oldest child of the oldest child, I attended many of them and have fond memories of ‘boogieing’ with my grandmother on the dance floor until the reception closed down.

She was a fabulous dancer.

She was also a beautician. She had her own salon in the basement of her Ohio home. The cousins and I would play in the swivel chairs and old school hair drying chairs. Sometimes she would paint our nails. Once she gave my poker straight hair a perm. I bore a shocking resemblance to a brunette poodle for the next six months.

She was a keeper of memories.

Lots of things found their way into cigar boxes and, as I reached adolescence, my grandmother would take me into her bedroom and show me old photos, the ones that meant the most to her. She would tell me stories of those long gone but not forgotten. She never let the dead be forgotten. At the time, I didn’t realize how important it was to keep those memories alive. I was a bit concerned by what I felt was a macabre focus on the dead. Now I understand as I strive to do the same with those who have so recently gone. The memories keep them close. Sharing those memories feels good.

The last time I saw my grandmother was nearly 10 years ago at a family reunion. She met and held my children and, for the first time, I could imagine how incredibly difficult it must have been for her to try and raise ten children while my grandfather worked two and sometimes three jobs to put food on the table. I felt an empathy for her I’d never felt before and a strong desire to learn from her mistakes. And her successes.

And then dementia began. (While my memory is sometimes spotty, the dementia was hers, not mine.)
Alzheimer’s took much of my grandmother’s vim and vigor nearly a decade ago, and so, in the scheme of things, I felt as if I had already said my goodbyes. She was no longer the vibrant woman I remembered as a young child. She no longer remembered me although my father swears she had moments of clarity for her ‘favorite grandchild’. I’ll take that. I hope that when she remembered, she thought of our long walks across the train tracks. I hope she knew that she was the only adult I would hold hands with long after I’d deemed myself ‘too big to hold hands’. I hope she knew that I learned things from her and that I have fond memories of our time together.

One week ago, I was told she was put under hospice care. On any other day, this may have upset me but just one day prior, I was told a young friend of my daughter had been killed in an auto accident. Killed. Taken away too early. Just like cancer. Another senseless death to explain to my children. Another death that made me angry and sad and scared.

So while today, and for the coming weeks, my family mourns the death of a woman who is directly responsible for so many of us being on this planet, I feel very much at peace. My grandmother lived her life. A full life. A beautifully imperfect life. She touched us all and there was goodness there. We shared dances and butterfly jewelry and photos of long gone, but always remembered, loved ones.

Tonight, I will dig up my own pictures of the past and honor my grandmother as she honored those that went before her. And, after a few tears, I choose to share the good memories with my children and hope that I am so lucky as to live a long, beautifully imperfect life.



Family Reunion 2004




Tuesday, June 17, 2014

An e-Ticket to my Happy Place


Evidently my happy place is an almost ripe blackberry.

In the center of my upper chest, just beneath my collarbone. When I breathe in, the imaginary fruit expands giving off the aroma of freesia-roses.  And, if I were to taste this internal creation, I would be rewarded with the flavor of warm vanilla.

This is not a dream, this is the mental manifestation and metaphor for the well-being space I am in right now.
I have just finished a one-hour cancer coaching session with Shariann Tom of The Cancer Journey.

After my cancerversary experiences in the previous week, I found myself in a brilliant space on a scale of Physical, Emotional, Spiritual, Hope and Trust and somewhat reluctant to engage in a coaching session on such a glorious day. After all, coaching is supposed to elicit improvement and I was sure there was no improving on this day.

After ten minutes of easy phone conversation around what external and internal events put me in such a fantastic space, I revealed that my only immediate concern was how to maintain and/or reclaim this space as the ‘wholeness’ started to ebb.

And thus began the great blackberry adventure.



Shariann asked me to envision the space where the strong emotions I was experiencing were kept.

I immediately sensed this wholeness was carried in my chest.

Shariann then asked me to envision the shape of this wholeness.

Perhaps because I was in my backyard at the time, and picking blackberries just prior to the exercise, the first shape that popped into my head was that of an enormous, pulsating blackberry. With my eyes closed, the image was vivid. A giant blackberry centered in my chest, just below the collarbone and expanding and contracting with every inhale and exhale. The colors of the blackberry varied just as a not-quite-ripe real berry might, and to me, signified the ripeness of my thoughts and emotions.

After spending a few minutes with this image, I was asked to attribute other qualities including taste, smell and sound to the wholeness.

For long moments at a time, I was in a state of just being. Just feeling.

If we’ve ever met formally, you know that I am always more of a ‘human doing’ than a ‘human being’. Spending even just a few minutes basking in an ethereal flow tends to make me anxious to get up and ‘be productive’. 

But not this time.

With images of the blackberry in my chest, I was able to lean into the moment. I was able to let go. I was able to relax.

Following the exercise, I realized I was even more relaxed and emotionally comfortable than I had been before. I was also relieved. Relieved that, as this feeling of centeredness begins to erode with exposure to daily life, I have a multi-point and multi-sensory method to reclaim it.

For every physical impact cancer has on an individual, there is at least one complementary emotional impact. In my experience, doctors, nurses and surgeons focus primarily on overcoming the physical obstacles and healing the physical wounds. Their goals are to overcome a crisis situation and put patients back on the path of life. In the cancer world, NED is victory.

Yet, in fact, anecdotal conversation has demonstrated mental and emotional health can often plummet when treatment is complete, even if the patient has no evidence of disease. With no more appointments to attend and no more ‘battle’ for which to rally, survivors are left to move on. During that quiet period, we are blindsided with the ‘what-ifs’, the tangible losses, and the insidious fear of recurrence and/or metastasis.

We experience extreme gratitude towards those who diagnosed, treated, rebuilt or otherwise supported us. And we also experience extreme guilt for being anything less than manically thrilled at the prospect of another day of life when others don’t always get that opportunity.

Whether you find continuity of support through formal cancer coaching, a local support group, an online support community, or simply through the network of family and friends who have been there, mental and emotional release and fortification are critical.

Personally, as a more-is-often-more personality, I consistently access multiple modalities for support. While this suits me well, learning a method for achieving mental wholeness on my own is both soothing and exhilarating.

An hour of cancer coaching doesn't replace the strong network of friends, family and survivors I have around me but one hour of cancer coaching certainly earned me a perpetually valid e-ticket to my very own happy place.



Saturday, June 7, 2014

Adversity Happens - Happy Cancerversary


On the one-year anniversary of my breast cancer diagnosis I spent the weekend with my husband in the Mojave Desert.

The trip was not a celebration of the road traveled nor was it a luxury spa weekend. My husband was a participant in the Trona 308, a 308-mile bike race from Santa Clarita, CA to Trona, CA and back.

For twenty years, my husband and I have been supporting each other in events that are best classified as ‘stupid human tricks’ but this was the first ever ultra, ultra stupid event we’d ever attempted.

The plan was for him to ride and for me to crew (drive the car the entirety of the course, leapfrogging him to provide water, ice, food, common sense advice in the wee hours of the morning and hugs).

The drive down to southern California on May 30th was filled with conversation not strictly about the ride itself but about the day. My cancerversary. Brandon had offered more than once to skip the race and commemorate the day in whatever fashion felt most restorative to me.  At my six-month anniversary we hosted a Gratitude Party  for friends and family who’d lent so much support in those early weeks and months.

A party didn’t feel right this time. Honestly, a party felt like tempting fate.

I wasn’t in a celebratory mood. I was pensive.

Dates have always been important to me. I celebrate half birthdays of those I love; I remember and commemorate dates of first times and last experiences and I often inject and interpret meaning where other people find none. The months of May & June were full of anniversary minefields but the big ones were my first mammogram and ten days later when I was given my biopsy results.

Talking helped. Talking through the meaning I’d placed on those dates and talking through the memories that were invoked reminded me that I have the power to give meaning to anything. I could view May 30th as the day the world came crashing down, or conversely, I could choose remember it as the day I started my own version of an ultra-endurance event. I could also choose to celebrate that one year later, I am cancer free and physically and mentally strong.

The more we talked I realized that, one year later, I feel a bit as I imagine Dorothy may have felt wandering along the yellow brick road.

Remember the super scary forest with the mean apple trees? That was the cancer part of last year. After four surgeries and four recoveries, I’m still on that road but I’ve moved beyond the mean trees.  I can see a bit of the larger forest. Taken to injecting meaning and finding parallels where others see nothing, I then equated my sequential recovery fatigues to the sleepy field of poppies. Sleep, sleep, sleep.

Coming out of the scary forest, waking from the poppy field fugue, I am glimpsing that the bigger picture is that my life is so much bigger, broader and funner (yep, I said funner!) than just cancer and survivorship.

By the time we arrived in Santa Clarita to check in as Sanguine Octopus*, I felt celebratory.



Adversity happens. It’s what you do in the face of it and the aftermath that creates your life.

At check in, I re-met George “Red-Eyed Vireo” Vargas. George and I met a year and a half ago at the Death Valley Century ride. He had had a hellacious year and I was setting out to complete my first century ride in nearly 15 years. As it so happened, I had read George’s blog the day before we headed to Death Valley for the ride. I read about his difficult year and I was suddenly inspired by all that he had, and was continuing to, overcome. Meeting him at the finish, I told him how his posts had given me the confidence boost I needed to just put myself out there after so many years. And then we lost touch.

To see him sitting there was again, an inspiration on my cancerversary. A reminder of all that we are capable of completing. I reintroduced myself and he asked where I’d been, since obviously I’d NOT been on the ultra-cycling scene. I gave him the short version of the last year, leaving out the part where my mother was diagnosed but including mine. In the time since we last spoke, George had started a cycling team and ironically, REV Endurance Cycling’s official charity is the Breast Cancer Research Fund. Also a bit ironically, George had broken his hip in January and was, once again overcoming adversity to ride the Trona as part of a 2-person team. He said it with the same nonchalance one would discuss the weather yet he was sitting there fewer than five months later as a competitor.

Indeed another slap-on-the-back-and-kick-in-the-shins reminder that adversity happens and that it’s what you do in the face of it and the aftermath that creates your life.

The next morning, as if to prove the point just one more time, the universe let the Trona 308 unfold.

This is no ordinary 300+ mile event. The course winds from Santa Clarita, through the Angeles Forest and then pushes the envelope of heat and wind through the Mojave Desert. Arriving 154 miles later at Trona in the Searles Valley, we’d managed to overcome quite a few obstacles but turning around, into the wind, to ride back is when adversity really amped up.



If you want to read a play by play of the ride, check out any of the Adventure Corps #trona308 riders, they all have stories to tell, but a few of the pics below give you a bit of an idea of the heat, wind and mental obstacles these riders needed to move through.






At eleven in the evening, Mark (Viszla) came into stop 6. Mark was a randonneur (unsupported rider) and I had offered him and other rando riders unsolicited support on many occasions throughout the day. While a few took me up on water and food, Viszla always smiled and said he was fine. In the final hours of the evening, with over 70 miles left to go, Vizsla looked markedly less than fine. He looked fried. He looked bummed. He had taken a wrong turn, gone several miles out of his way and was just damn tired. While I waited for my husband to arrive at the check stop, we chatted.

We chatted about this event being his first ever event. We chatted about his near death experience and how he overcame with not only a very evident personal chutzpah but also the support of loving friends. Matt’s story is not mine to tell but it is a beautiful, incredible, amazing story. I cannot tell you that sitting down and having him relive a difficult piece of his past gave him the energy to refocus and keep going (no, that was absolutely the CocaCola I gave him – ask him, he’ll tell you!) but it sure as hell inspired me.

We all left California City and dove into the wind tunnel. Eighteen miles of howling wind on Oak Creek Road took hours. Brandon was riding. I was driving, sitting, thinking. Then he’d stop. I’d feed him, hug him and send him on his way. Then I’d return to sitting and thinking.

For hours after my chat with Vizsla, during the times I sat lonely in the post-midnight desolation, I continued to look up in wonder at the vastness of the very small part of the universe I can see. I thought of all those who have come before me and will come after me. I thought of friends that have died and friends who have thus far eluded death. I thought of the scary moments of the last year and then put them into perspective with the triumphs.

At 4:00am, I met Brandon one final time at the corner of Johnson and Elizabeth Lake roads. At this point, he was riding by rote and in a zone of fatigue that left him pretty much unable to remember directions. I had met him at every turn for the last 100 miles and this was essentially the final one.



With 20 miles left, he assured me he was ‘good to go’ and asked me to please go back to the start/finish to wait. After a quick mental calculation about his ability to finish the ride, and my ability to let him ride the rest unsupported, we made a deal. I would wait fifteen minutes after he set out, leapfrog him one more time and, if all was good, wait for him at the finish line.

Just over an hour later, as the sky began to brighten in predawn Santa Clarita, I saw his headlight coming down the main street.

He pulled into the finish at 5:15am on June 1st.

We didn’t finish the ride together. 
But together we finished the ride.



Ironically, or not, June 1st was also National Cancer Survivor’s Day.

There were times in those 22 hours and 45 minutes that I would have gladly traded places with Brandon on the bike to ease his suffering, but that was not an option. And I know over the past 12 months, there are times that Brandon would have traded places with me in the doctor’s office, but that was not an option either.

There were times when, by the very nature of the challenge, Brandon had to ride alone. And there are times my path has had only room for one.

Perhaps there are no coincidences.

I spent my first cancerversary surrounded by amazing men and women who not only understand suffering but understand how to transcend it and allow the experience to make them stronger.

Adversity happened. And it will happen again and again. It’s what I do in the face of it and in the aftermath that creates the value of my life.



*Riders of the Trona 308 and Silver State 508 are not given race numbers. Instead they choose identifying totems.


Wednesday, May 7, 2014

"No Intracranial Metastases" = All Good


CLICK, CLICK, Clank. Whirr. Ka-Chunka, chunka.

Somewhere between when I pushed PUBLISH and when I climbed onto the MRI bed, I lost my Zen perspective. All I could think was, “Last year I came in for a mammogram expecting nothing and ended up with a cancer diagnosis. THIS IS MY BRAIN.”

Ya. So my inside voice was like that. My outside voice was overly talkative as it is wont to be when I’m nervous.

There was not enough leftover brain power to ruminate on climate change, world hunger or even simple algebra. I climbed in the bed. I was very still. I counted down from 1000 by threes.

Whirr. Ka-Chunka, chunka. Clickclickclickclick.

I stalled out a few times and at 221 was pulled out for my shot of contrast and pushed back in. I knew I’d screwed up the whole backwards count thing when I finally arrived at the number zero. There was enough brain function not allocated to anxiety to realize that, since 1000 is not evenly divisible by three, I shouldn’t have ended up at zero.

“C’est la vie,” my inside voice said and I started the process of counting down from 1000 all over again until the test was over.

Distraction is my preferred method of managing anxiety so I futzed around at home until I received email ‘bing’ at 3:03pm from my oncologist’s nurse practitioner:

MRI BRAIN W/O AND W/ CONTRAST

** HISTORY **:
41 year old woman with breast cancer and headache and periorbital
numbness.

COMPARISON: None available.

TECHNIQUE: Multiplanar, multisequence images of the brain were
obtained without and with 6 cc of Gadavist intravenous contrast at
1.5 Tesla.

** FINDINGS **:
Ventricles and sulci are age-appropriate in size. No suspicious
parenchymal T2 hyperintensities. No restricted diffusion to
indicate acute infarct. No suspicious susceptibility artifact.

No masses, mass effect, or extra-axial collections. No
hydrocephalus or herniation. Intracranial flow-voids are intact.

No suspicious parenchymal, leptomeningeal, or dural enhancement.

Orbits and globes are intact. Paranasal sinuses and mastoid air
cells are clear.

No suspicious scalp or calvarial lesions.

** 
Impression 

**:
Normal contrast-enhanced brain MRI.

No intracranial metastases.

Clear sinuses.


No intracranial metastases. 

No intracranial metastases. 

No intracranial metastases!


I did a little dance. Walked outside and smelled some of my front yard roses with my completely “normal contrast-enhanced brain’.

(Thanks for all the good vibes texts and emails - they were obviously put to good use!)

Friday, May 2, 2014

Turning Scanxiety Into a Math Problem


Within two hours I’ll be enclosed in a long, lighted tube and lying very, very still.

An occasional “How are you doing, Stacey?” will break through the crazy loud clanks, clicks and whirrs.

"I'm fine," I'll answer. And, after the third or fourth ask, I may respond with an, "I'm great."

And I will mostly mean it despite the fact I dislike noisy, enclosed spaces.

In fact, I will be doing math problems in my head.

If I start to get exceptionally agitated in that tiny confined space, I will revert to counting backwards from 1000 by threes. The backward counting activity is challenging enough to keep my mind off of the extreme enclosed space and yet simple enough to do while putting up with the noise from the MRI machine.

I am having an MRI to rule out any abnormalities with my noggin.

There will be nothing amiss. At least there will be no abnormalities discoverable by MRI.

MRIs don’t pick up anxiety. MRIs don’t pick up frustration. MRIs don’t pick up fear.

Actually, I am surprisingly mellow this time around. I have a coping mechanism (math problems) that works for long runs, long rides and even long scans. And I’m confident that the MRI will simply serve to show that this Type-A personality can lie still for longer than most people think I can.

In the scheduling phone call, the MRI tech asked, “Are you claustrophobic?”

I paused, chuckled and replied, “I KNOW that’s a trick question. But I’ll be fine.”

And I will. 

1000, 997, 994, 991…



Wednesday, April 30, 2014

A Tsunami of Emotion & the Rogue Wave


Grief comes in waves.

Losing someone close is not a clean-cut mourning process with a timeline. Anniversaries, songs, places, even smells, can trigger random memories that spur waves of sentiment months and even years after the original goodbye. There is the initial tsunami-sized emotional destruction and then continual reminders of the loss that ebb and flow as the tides.

Occasionally these emotional aftershocks are even more severe and more poignant than the initial grief.

And I got smacked by a rouge wave a few weeks ago.

Cancer = Grief Even When you Survive
A cancer diagnosis, treatment and recovery resembles that very same cycle of grief. We’ve all lost something: a body part, a physical functionality, an innocent ignorance (or an ignorant innocence!).  In my case, the grief surrounding the loss of my breasts pales in comparison to the grief involved in the loss of the it-can’t-happen-to-me-ignorant-peace-of-mind that accompanies youth and a lifetime of good living, good health and good luck.

Where’s the Damn Finish Line?
Ten days after surgery number four, following yet another recovery plan to the letter and eagerly anticipating the celebration of another birthday, I was physically coming right along but emotionally knocked flat on my arse.

Perhaps I set myself up for it. I expected this final surgery to be a breeze, I looked forward to being ‘done’ with cancer and all its trimmings.

Logically I know this doesn’t happen. I’ve written those very words before. You don’t package diagnosis and treatment into a nice little box and label it Cancer Memories. The process is permanently altering in many ways.

Yet my thoughts were still trending toward, “Once the exchange surgery happens, I can get back to normal.” Yep, I said the word “normal” to myself. 

Oops.

This last surgery was reactionary to remove my leaky expander and while definitely desired, it was comparatively unplanned.  My recovery plan was hastily put together and resembled my January plan in many ways. I felt as if I already had this t-shirt and was not really in need of another.

Hindsight has such clarity. I realize now that four surgeries in 10 months is a helluva lot for any single body to handle. Physically and emotionally. I lost things tangible and intangible. But I needed to be reminded that everything I lost was real and it’s okay to grieve. I also believe I forgot that a recovery in the middle of a recovery may be physically similar but emotionally more complicated.

Birthdays: A Celebration or a Lead Up?
And then there was the issue of my birthday. My 41st birthday.

Part of me, a large part, was just glad to have made it to another birthday. I am attuned to the fact those are not always givens and, in the past year, have lost several people who will never reach their 41st birthday thanks to metastatic cancer. But another part of me, a smaller but very real part, didn’t want to upset the proverbial apple cart with too much pomp and circumstance.

You could call me superstitious and you’d probably be correct, but the anxiety surrounding a repeat of last year’s month long birthday celebration that was capped off with a cancer diagnosis was not something I was looking forward to.

And the Tide Flows Out Again
In the thirty-seven days since my last surgery, I have laughed and cried. I have berated myself for ‘going backwards’ and also celebrated my successes.

In other words, I have lived every moment of what I felt.

I feel centered now. I feel strong today. And while I not-so-secretly feel as if this ‘journey’ should be over, I realize that two steps forward may occasionally be accompanied by a single step back.


And, by anyone’s measure, this is still progress.

Monday, March 24, 2014

My Very Own Final Four - Winning all the Brackets

From excisional biopsy to today has been 10 months.

Four surgeries in ten months and this is the final, making this my very own Final Four amid the March Madness!

As has become customary, I'm putting out my post-operative goals so I can visualize success and feel a sense of accountability to make them all happen.