Monday, March 7, 2022

No, Not Me. You must have me mistaken with someone else.

 It started like this.  There was this thing called a pandemic.  It was only going to last a few weeks, or maybe months.  But then it didn't.  And people put off routine screenings because why risk going into a hot bed of the rona for a routine screening.  I made appointments, which were really hard to come by, for my annual mammogram.  And then news got worse and I put it off longer.  And then it became impossible to get an appointment--my HMO based healthcare provider who covers half of the county population only had one mammography machine available two-three days a week.  And since in all of my years I've never had an issue, have no familial history, have normal risks factors (other than living in one of the counties with the highest rate of breast cancer in the country), I figured it could wait.  Then things got busy.  I went in one day for my appointment, but after waiting over a half hour with no clue when I was going to be seen, I left.  I finally made an appointment for the day the sale of my house closed and less than a week before I was leaving town.  I went in and had my scan and went home, ready to move on to the next thing.

That afternoon I received a call back.  "We'd like you to have a diagnostic mammogram and an ultrasound. Can you come in the day after the holiday?"  Sure.  I had had my vaccine, there had been a lot of false positives due to lymph node enlargement.  I figured they were just being safe.  So the following Tuesday I went for the next two scans, not at all worried.

Now the facility where you go for this type of imaging is old and outdated and cramped.  Pretty much third world type.  Ironic since I have designed some kick-ass beautiful breast health centers.  Where I was treated was not one of them.

I went in for the mammography portion of the program.  There were five seats in the waiting room, and only three were available for sitting since the others were blocked off for social distancing.  And, by the way, extraneous visitors were not allowed.  Of course one woman brought her husband, who filled one of the chairs meant for the patients.

Several pictures later, after the radiologist kept asking for more, I asked the tech what she was looking for.  She showed me.  "Huh, that does look like it doesn't belong there," I thought to myself, "probably a cyst".  Time to move on to the ultrasound.  Well, that department is half-way across the hospital, through main corridors with patients, staff and materials.  They give me a double gown and I carry my sorry bag of clothes and purse down the public hall, trying not to think about the fact I'm half dressed and feeling very vulnerable.  

After what felt like a half-mile trek, I arrived at my destination (at least I was escorted) and prepped for the ultrasound.  The tech did her thing.  Then she called in the radiologist and she did her thing, staring intently at the screen and taking the ultrasound doppler across my breast and arm pit.  Then she says that there is a suspicious mass and the only way to know for sure is to do a biopsy, they could do it right then or I could schedule it.  I'm planning on leaving town the next day so I say "Do it".

The team scurried around, they brought in a nurse and collected supplies.  A sachet of lavender was pinned to my gown and I was positioned for the biopsy.  It wasn't horrible.  A little numbing medicine for the breast to go along with my very numb brain.  "This isn't happening, they just have to rule it out and I'll get on with my long awaited next chapter of my life," I was thinking.  Five core samples were taken and I was bundled back up in my two gowns and walked back to mammography through the very public halls because they needed new pictures to be sure the clips were in the right place, or some such thing.

And back into that mammo waiting room I go with the husband of a patient still filling one of the three seats and other patients in the remaining seats, also looking a little shell shocked.  There I stand, in a gown, holding an icepack to my breast and no where to sit after having five holes punched in me and there sits the big fat male, feeling entitled to a chair in a tiny room filled with women in gowns.  What the actual fuck?  Male entitlement at its finest.  The staff then had me and another patient wait in the stereotactic biopsy treatment room on rolling office chairs for our next turn at the torture device.  Finally I was called back into the scan room and had more pictures taken, with an additional few pictures for good measure and then told to get dressed and go home.  And as I left, the entitled male was still occupying one of the few chairs available for patients.

For the record, I can understand why someone would want their husband or loved one with them.  Hell, I wanted my husband with me too, except he's dead, so there's that.  This man appeared oblivious to all that was going on around him and the discomfort of women who may have actually had breast cancer.  He was an interloper.  He could have waited 30 feet down the hall in the imaging waiting room, where no one is waiting in a gown and made everyone more comfortable.  Also for the record, a state-of-the-art breast health center has an outer waiting room, where patients wait before gowning and where loved ones remain during the process, and an inner gowned waiting room for patients who have disrobed and wearing a thin hospital gown.  I know this because I've designed more than one.  Just my luck I am insured by the system with the least consideration of patient's dignity.  Oh, and did I mention, COVID?  Yes, no extraneous visitors.  I think that is also a horrible way to go through this process, but we are in the middle of a pandemic and some pigs are not more equal than other pigs (Animal Farm reference).

I left the hospital and got in my car.  I sent a text to my friend who is a 20 year survivor of Stage III breast cancer and told her I had a biopsy.  Her response was "that's not good".  And I responded, "Oh its nothing, just have to rule out this weird thing".  

I went home and fell asleep for two hours, clinging to an ice pack that had since lost its cold.  I was exhausted.  The next morning I got up, packed up the car, picked up my friend and hit the road to the Midwest.  This wasn't going to change my plans.  It was nothing.  I don't have cancer until someone tells me I have cancer.

Three days later, at a truck stop in Sydney Nebraska, I return a phone call to the breast care coordinator. "The biopsy came back positive for lobular carcinoma," she said. "But its tiny and you probably won't lose your breast and we can treat this."  The next words out of my mouth were "What's next?" and she went on to describe a meeting with a surgeon which she set up for the next week.  My friend and I looked at each other.  "What the fuck."  "I knew it, " I said.  "I would say I have breast cancer to myself and there was no emotional reaction.  I had a gut feeling, even though I kept trying to talk my way out of it."

I have cancer.  Someone just told me I have cancer.

It doesn't end, does it?

There are just longer breaks between it.  It.  The sneak grief attack.  It happened again today.  Why today?  Why not?  I am subtly aware that 25 years ago today we moved into our beautiful home in California.  The home that was filled with life, love, joy and grief and sorrow and recovery.  And I am glad to have let it go.  Today it was music.  Don't Stop by Fleetwood Mac.  The signature song of RuMoRs.  The song they closed with at every gig.  It snuck up on me.  The wailing cry coming deep from within, the expulsion of all of the feeling mixed together--the missing, the fear of the future, the frustration with my misbehaving heart, the letting go, the surrender, again.  Then the hour spent searching desperately through files to find a recording of a gig with Don't Stop. I wanted to hear HIM counting in the band and hear HIM play the finale with the final crash on the cymbal.  In my mind's eye I could see him grabbing the edge of the crash to quiet it, leaning forward over his snare looking at his band mates with that smile, drench in sweat.  The exchanges between them, enveloped in the bliss of having come together to play an awesome gig, each giving from the depth their soul to an appreciative audience, happy and smiling from an evening on the dance floor.  The exhilaration and the exhaustion in his stance.  But most of all the joy and the contentment of doing what he loved.  

There was nothing left to do but break down.  I would dismantle the sound system, wrapping cords--the one's with the green tape were ours, the ones with the blue tape were Dave's, the one's with red tape were Bruce's (is that right?), collecting the snake and winding it back into its black and yellow box until the next gig.  Tom breaking down the drum kit, putting the hardware and stands into their rolling case, the cymbals (the crash, the splash, the ride, the gong and the high hat) into their case, and stacking the drums for me to put into their cases once the sound board and all of the pieces were packed up. I had a system for putting each drum into its individual case, with a minimal of wrestling between drum and case and me.  Tom would load the car, there an order to that as well.  Everything had to go in a specific way in the game of Tetris to get all of the piece into the Jeep and later the CRV.  I would drive home, Tom being so tired from playing.  They say that drummers are elite athletes given how physical it is to play with all four limbs doing something different.  It was usually a short drive home where we would unload everything into the garage (also known as the drum storage room) and yes, there was a technique for how things were put away.  We'd let Zora out for her nighttime zoomies, she had been alone all evening and had energy to expend.  Once inside, we would partake of our traditional post-gig snack of White Castle sliders, potato chips and Trader Joe's dill pickles. As we ate, with Zora giving us the death stare waiting on a chip, we would discuss the gig, who had missed a cue, how the band sounded in the back of the house, and could everyone hear their monitors?  And then we would head to bed, tired and sore and spent, together, looking forward to doing it all again on another night in another venue.

Oh how I miss these times, the being a part of, doing what I could, watching and supporting the band to be the best they could be on any given night.  





Sunday, January 19, 2020

Heart Strong

The 5th anniversary of Tom's death is in 8 days. In the last 5 years I've dealt with Tom's illness and death.  I've had cataract surgery on both eyes.  Then 848 days ago, while having dinner at a local Mexican restaurant, my heart went into a strange rhythm.  It had happened once before but converted back to normal quickly.  This time it didn't.  I kept thinking it would.  But it didn't.  A week later I took myself into the ER and was diagnosed with persistent aFib.  I was put on medication and sent home.  A month later I had my first cardioversion to put me back in normal rhythm.  It didn't last.  It began my long journey through various medications, multiple EKGs, 5 echocardiograms, one angiogram, one stress test, one cardiac MRI (soon to be two), four cardioversions, one surgical ablation (heart surgery), one catheter ablation (heart surgery), and a bout of constrictive pericarditis which caused diastolic heart failure (since resolved), a thoracentesis, a 14 day monitor and a 30 day monitor.  Last week I received the results of that 30 day monitor and my cardiologist has declared the last ablation a SUCCESS!!!!!  My heart is still in the healing process from what is believed to be a flare of the pericarditis from the second ablation.  But I am HEART STRONG! Today I felt good.  And its good to feel good. Up for 2020, two joint replacements.  And I've done all this while continuing to work, redoing my house, learning to ride a motorcycle and just trying to recover.  Dayum!  That is a lot of stuff.  I am pretty awesome if I say so myself.  And yet, it could be so very much worse.  I am grateful for what I do have, a home, an income, health insurance, great friends who have helped me through this.  And Zora--who is the only reason I got out of bed the next day.
It has been a long hard difficult journey. There were days I didn't think I'd make it through and days I didn't want to make it through. I know the joint replacements will be very difficult surgeries to recover from. But, hell, if I can survive the last five years, I think I will get through it just fine. Its the last thing I need to do to reclaim my life, which has become limited due to the constant pain when walking or standing.

Our House


Twenty-three years ago today, on January 19, 1997, we first walked into the house that was to become our home.  We arrived from Chicago the day before and were looking for a place to rent, not buy.  The moment we entered we knew we absolutely had to have it.  We put in an offer the next day.  It took some finagling and the help of family and six weeks later it was ours.

It has been the happiest of places, filled with love.  It has been the saddest of places, the home of a broken heart.  It has provided shelter to three dogs and two birds, a devoted married couple and a devastated widow.  It has been a place of refuge and a place of angst (think nasty neighbors).  It has hosted band practice and countless dinners.  Music and laughter still echo from its corners. It is the place where we fought and made up. It is the place where we laughed and cried.  It echoed with the howls of anguish after a failed IVF cycle.  It is the place that recharged us after long days of work and a week of business travel. It is the place we returned to after learning of the death of my dad and fourteen years later, the death of my mom.  It was the home to which Sonnet traveled across the country with us to spend her last four years and the home that Kona traveled from Texas to live in with his new family. It is the home that Zora traveled to from SoCal to bring joy to two people recovering from the loss of their goofy lab. It was the home that Bubba settled into after being abandoned by his family of twenty years and where he passed being loved on.  It is where Phoenix would scream his lungs out and where he would cower when a hawk would fly close to the window. It is the very sacred space where Tom took his last breath It was Our House. And it was a very very fine house.

I love it today just as much as the first day we moved in.  I still remember the feeling walking down the stairs the first morning thinking "this is ours".  I felt it was the beginning of something great, that we had arrived.  We would stand on our deck at night and marvel at the stars, which could never be seen in Chicago, and admire our view and talk about our home in Chicago where the view was of two brick walls, a used car lot and a tree.

This place, these four walls and the roof, this mass of concrete, wood, metal, glass, gyp board and paint, is far more than a house.  It is a home, my home.  I am extremely grateful for it.  Every time I walk through the door my heart and breathing slow and my shoulder relax because I am home.  Of course the happy greeting by Zora will always make me laugh.  It is now my home--the place where I have healed.  It is still filled with that love and good juju.







The Photographic Journey Part Five

My photographic journey has been an experience.  I never really thought about it as experience, focusing more on the outcome, the photos.  I neglected to understand the most important part of the process, the actual shoot, the day you stand in front of the camera and contort your body to make yourself look good.  Do not underestimate the value of good lighting and professional hair and makeup to change your everyday self into your "OMG is that me?" self.

The photoshoot with Zora was really two parts.  The first, Zora in the studio.  The second, Zora and I in the park.  The images of Zora in the studio are precious.  She was such a good girl and worked really hard to please me.
Zora the Princess
Zora the Pathetic Abused Dog


Zora the Catcher
The photographer captured her personality.  And her beauty.

The images from the park captured exactly what I had told the photographer that I wanted, our interaction.  What surprised me was how much Zora looked to me, how she would focus on me. The shoot provided some amazing art.
Sunset Silhouette 
One of the things that I came to realize during the photoshoot and shortly thereafter was the job that Zora took on after Tom died.  I believe he told her to take care of her mama and she took his request to heart.  She has become much more protective of me. And while she has people in her life she absolutely adores like her buddy Christine and her Aunties Mary, Dawn, Holly and Rena, her first priority is her mama.  She looks at me with love, mostly.
On the Bridge

In the Park
On the Bench
This dramatic image now hangs in my bedroom.  There is something about it that speaks to my soul.  My pup and me gazing out over the valley and admiring the sky, together.

And finally, our "Gone with the Wind" photo.  It hangs on the mantle, and it says everything about surviving, and moving forward.  Me and my pup.

Friday, November 8, 2019

Regrets and Lessons

I wrote this in 2019.  The lesson has been driven home even more since then.  My beloved big brother died in August of 2020.  Tom's big brother, my "udder brudder" died five months later.  And not quite a year after that, a few short months ago, my brother's wife and my precious sister-in-law also left us.  These words, which I hadn't yet published, are still true, and ever more powerful.  We've survived a pandemic,  One of the things to come out of the pandemic is the "Great Resignation".  Workers have re-evaluated what is important to them and are making hard choices.  Employers are also having to adjust if they want to keep qualified workers on their teams.  It is, in my opinion, a good thing.  A little late for me as I slide toward retirement in the next five years.  Take heed.  

"It has been a long few months. Work has been intense, and fast paced, and frustrating, and brutal.  I have worked more hours in the last year than I have in several.  And in all of the work, I gave up so much of my life.  Work has taken over my life.  It has taken from me the time to care for myself, my home, my health, my sleep, my pup.  It has taken the fun from my life.  When I do have a day off, I'm so tired that I can't get on my motorcycle.  I don't get on it when I'm tired.  It is dangerous.  Work has taken my time and energy to build a new life. It is not a new story.

After a particularly intense work-filled weekend I headed into a two-week run of meetings.  On that Monday morning I approached the trailer, rolling my case along with me I thought "I don't want to do this."  That isn't how I usually feel as I approach a round of meetings.  I'm usually excited and pumped to do it.  But that morning I had nothing left.  I realized that I did not survive the last five years to work like this.  I did not survive Tom's illness and his death, two heart surgeries and a rare dangerous complication to do "this." This is not what I want for my life.  Don't get me wrong, I love the work. What I don't love is the unrelenting pressure and the demanding schedule.  This is not the quality of life that I now want.

I harken back to the biggest friction in our marriage--it was how much I worked.  And how much I traveled. All of that time that I put into my job and for what?  My clients didn't care what I sacrificed. And the firms I worked for certainly didn't care.  All they cared about was how happy the client was (I always had happy clients) and how much money they made. But they didn't care about me, or my life, or my husband's life.  That was true for most of my professional life.  I will say that I have been fortunate that in the last six years I have worked with a stunningly good firm and had stunningly good clients who were so very kind to me when Tom died. I was blessed at that time to be working with good-hearted, solid kind people.  The antithesis of my previous experience where I spent so much time crisscrossing North America for a different firm that didn't care at all.  Some individuals may have cared, but the firm and leadership as a whole did not.

The hard pill to swallow is that I am not the victim here.  I made the choice to do those things.  I thought that there would be some special reward at the end of the line.  Some type of recognition.  There wasn't.  Any loyalty was not reciprocal.  I had been sold a bill of goods about working hard and being rewarded for your hard work.  I bought it hook line and sinker.  And the sad part is that I learned way too late in my life it wasn't true.  I don't know why, exactly, that I have been so driven to get on that treadmill and put so much effort into a project.  I do love the work and the process.  And I love solving problems for my clients and building the relationships.  But why am I pushing so relentlessly, and why do I continue to do this to myself?  At this point, the only way out is through.  And I will need to endure and try to find ways to lessen the pressure cooker.  I am certain that the stress contributed to the reoccurrence of my aFib and the need for a second surgery.  Trying to answer this question will take more than a blog post to unravel.  Bottom line is that I am the only person who can change this. And I will have to figure it out.

As I was bemoaning my situation Friday to my brother (who is just like me in this regard--actually he is much worse), I wanted to drive home the point that time in finite.  Time with the people you love is finite.  One will never know when a moment could be the last.  And all of the extra time spent at the office or working for the client or being on the road to land the next big project or trying to impress the boss--
YOU. NEVER. GET. IT. BACK.    
EVER.  
Work is a necessary evil and can also be a rewarding experience.  I've enjoyed my career.  I've felt drawn to and committed to the work.  I have believed it was important work, that it made a difference in some small way.  Even if the only thing it did was support us so Tom could do the work he was meant to do, which really was important work.  My work serves it purpose.  My problem is balance.  I suck at it.  I keep trying and I keep failing.  I have had the hard lesson put right in front of my eyes.  All Tom wanted from me was to spend time together.  It was that simple.  What a fortunate woman I was, and what a clueless one as well.

I know you have heard it before but I am the lesson.  Put first things first.  Spend time with the people you love.  That is really all they want from you.  And it is the very best gift you can give them.  You.  Your time.  Your love.  They are what matters. And you are what matters to them."

Saturday, October 19, 2019

The Photographic Journey Part Four

I've said many times since Tom died that Zora saved my life.  She was the only reason I got out of bed the next morning, and every morning after.  She couldn't lose both her daddy and her mama.  She needed me.  And I needed her. She has made it her mission to protect me, to take over for her daddy.  She has taken her responsibility very seriously and done it very well.  I wanted to honor her and do a photo session--a professional one since she isn't a big fan of Mom behind the camera.  Zora's walker had told me about a photographer who does amazing pet photography and I had been following her page on FB.  I loved her work and reached out to her to talk about a shoot. I told her I wanted to capture the many personalities of Zora and our interaction together.  Barbara had us come over to her studio to talk and to see how comfortable Zora was in the environment with the lights and camera.  Zee was a trooper and did great.  We scheduled a date, which we had to reschedule at the last minute.  Then a coveted Saturday date opened up and I jumped at it.

So on a Saturday evening Zora and I jumped in the car and made our way over to the East Bay spending way too much time sitting on 37.  Once we arrived Zora quickly set about checking out the space which was all set up and ready for her.  We started the shoot and Zora did great. She listened well, did as she was asked and was easy to bribe with Charley Bears.  Barbara said that Zora was part of the 1% of dogs who get to be in the studio without a leash.  After we finished in the studio we headed to a local park for outside shots with both of us.  I was much more comfortable in front of the camera this time.  The photographer said she should send all of her clients for their goddess shots before coming to see her.  I was easy to direct and she could focus on the dog. Again Zora did great, even with all of the new smells.Barbara noted that Zora wouldn't take her eyes off of me.  When we are at home she either ignores me or runs away because she thinks I'm going to do something to her ears or her toenails.  I didn't realize how much she focused on me until we had this experience.  I saw a few of the shots in the camera and they looked fabulous. After two hours of shooting we got back in the car and Zora conked out--she was exhausted.  I was so very proud of her and how well she did.  And I found the experience with her bonding.

A week later I received the proofs.  They were awesome.  And it was so amazing to see how much Zora kept looking at me.  The photos of us together were so sweet and loving, you can see the connection.  And the studio photos of Zee were great.

The first finalized photo is so dramatic.  As I was reviewing the images with Barbara, she described what she saw in this image as this "What I see in this image is a devoted pup looking so lovingly at her Mom who is recovering from her horrible loss and has begun to spread her wings in a life affirming and sassy way! Sniff...."   I fell in love with the image in an entirely new way.  Remember, one of the things that I wanted from this journey was to see how others see me.