And then there’s my cancer…

We never know how high we are
Until we are asked to rise
And then if we are true to form
Our statures touch the skies

  • Emily Dickinson from poem 1176

Happiness: an illusive inner state to those of us with terminal illnesses. Each happy moment rolls into the next, yet we drive through life on a road with potholes and speed bumps as a reminder that we better slow down and enjoy it while we have this chance. To be sure, each and every waking morning opens the curtains on a new chance to grab at the brass ring, that for us is coveted yet covered in Vaseline. The ring slips from our hand as we ride by. The horse we ride runs free with us on its back, hand filled with the shadow of oil from our attempt at forgetting for a single day that this might very well be our last.

As finding our dream house should make for a feeling of joy at the real chance of building a fantasy foundation for our new beginning, I still well up with tears when I’m alone. Amazingly we have experienced much joy, having moved from the angry, traffic snarled, polluted San Jose to the clean, kind, and friendly cradle of the Sierra mountain foothills. Put that together with finding a home to put down roots permanently and you’d think – what does she have to complain about? Believe me, I’m not complaining one iota. It’s simply that the bittersweetness of biting into such a red delicious apple knowing it’s laced with poison that will kill me sooner, or I hope, later, covers my heart with a dark vail of sadness. I may not be here to enjoy the fruits of the seeds we planted and have cared for such a long time now.

We tended to our garden most recently with the difficulty of the move itself and over many years seeing my beloved finally pull out of his depression. So much to look forward to, so much love in this very moment in time to be grateful for.

Then there’s my cancer.

Making plans to switch oncology teams, making sure we’re in as clean of a house with the very best infrastructure in which we can invest – things like low to no VOC paints and bamboo wood floors – we’ve found an opportunity to live by the anti-cancer book. Complete with new friendships and a very cancer-supportive community this is certainly what appears as one of the four noble truths: nirvana. I’m finding a certain lack of suffering here. To me, who’s always lived by the old cliche the grass is always greener and finding some level of happiness wherever I am, this time of my life comes as something of a surprise to me.

And then there’s my cancer.

I’m reaching out for an exacting of equanimity here. A balance of sadness and happiness. Where suffering becomes the background or the shadow and joy comes forward to the forefront and into the light. It’s so hard. That’s all the language I can use to look for a way to achieve balance of taking care of my physical and emotional heath while not focusing on it. I can liken it to taking a photo of a sunset when you’ve got a person standing in front of the camera lens. I can see the colors blazing in the distance but there’s a big dark presence preventing me from taking in all that beauty.

Because there’s the cancer right in the way.

I hide it well. Sometimes my beloved asks if something is wrong or if I’m angry with him. No honey I’m not. I’m happier with our relationship than any other time in our 12+ years together or any romantic relationship I’ve been in my entire life.

It’s just the cancer getting in my way again.

Here’s a poem I wrote a few weeks ago as my weekly blog bonus. I love the theme of it – it’s tangentially akin to the theme of this blog post. On that note here’s:

Cold Love

Would I be if born a snake
Or bee, or clam, or fish?
Leg less, bloodless, and cold blooded
A thing without future or past.
Without arms to hold us
How do they establish a child’s
First love? Without sounds
Without syllables, no words to wound
With no hands to slap cheeks for the tears?
No false devotion to express and
No arms to commit forged emotion.
Did god know we needed belief?
Maybe words and hands on the end of arms
Beat us to the punch?

Whose guilty fingers purge my throat
To say nothing of love’s remorse.
Outstretched, sewn, and quilted
Receiving dubious mistrust
And soiled gifts of healing.
Arms holding light to beseech me
The creatures run back to the wooded wild.
Any path dark and clouded
Covered with leaves compacted
By nights grand mothers who sneak
By and slither away with our soundless cries
Morays silently drift in shallows,
The pecks of grounded wild turkeys,
The opinions of poisonous black widows
All mothers in the dark shadows of sea, of land, and of twine
Wait to hold their young somehow.
They give what’s needed and then take away
Without a word to convey their warnings.
Compliantly we wait at the forest edge
Huddled alone and cold until
Tonight tar black and frightening
Clears away in the dim light of morning.

A random walk in my mind or the few moments in the mind of the living dead

A day in my inner life includes a hell of a lot of scary stuff. But I’m NOT scared. Well a little. Maybe. Hey, cut me some slack! This is deadly death causing cancer stuff for goddess’s sakes.

How do you feel about the whole question of death?

I’m personally not scared of the concept (read a few of my prior posts on death and dying) After drawing one afternoon and quieting my mind, my amygdala decoded during some of my resting brain activity during which my approximately 10 to the 4 synapses per neuron and 10 to the 11 neurons in my human brain aren’t doing all too much (sure!). Possibly it’s out of a condition I’ve applied to myself – I could already be a ghost! Holy shit! I ghosted myself.

Proving only this to only me: I’m afraid of leaving people to feel sad that I’m gone. Feeling my loss. In some ways they’ve already begun to feel my loss either by purposely losing me or by sending themselves away from me.

What I try not to do is imagine really stupid post mortem self images like me as a ghost. Sometimes I’m watching helplessly as my living beloved attempts to feed himself, which really frightens me for all really stupid reasons, like: God, can he remember how to even put the spoon in the right orifice? Get the fried rice out of your ears! Put the knife down and use the fork to put the egg in your mouth not your nose! Don’t even ask what he’ll do with a straw and a smoothie. Big conceit to show how silly these thinky things really are because the dead are having fun at Coney Island on a big rickety wooden roller coaster. With the Holy Ghost.

Just Who’s He anyway? I think the HG also God, just like the Son is God and the Father is the Big Kahuna God father of Christ. Right? But I’m Jewish so I am not sure if I’ve totally got it. I studied hard in my Philosophy courses in college. So correct me because I hadn’t thought to ask that question ever…

Except…

When listening to Bye Bye Miss American Pie by Don McClean. But I’ll leave this twisted line of thinking with a sorbet of one of my dad’s favorite songs. By Don McClean. Vincent (Starry Starry Night). Still it makes me cry like a big kid missing her dad. And I do think about him too.

Dead and gone, but not forgotten.

I worry about who will take down my online life or does it just linger like a ghost in the machine?

They aren’t worried about us here killing the planet, the people, and all the great ideas to fend off doing the first two things by capital crazed thugs.

I think a lot about the data on the net and how little our friends in oncology get out of it.

Of interest is how to help providers mine our data so it’s a two way conversation and they benefiting as well from social media. The money to drive these efforts likely needs to come from the provider side to develop the platforms to deliver usable, useful information to those who benefit most. I’m not sure how much I’m comfortable with insurers and pharmaceuticals involved in the discussion, but it is public information once we post our questions, opinions, and so on.

There’s really no way to stop anyone from sucking up our information anywhere but to closed groups like you mention on Facebook. And even then I question the privacy of such discussions given Facebook’s track record with in privacy matters.

I believe we benefit and our doctors and nurses and institutions can greatly improve our healthcare if our voices become part of the quilt that is the cancer care industry. My oncologist had me review with him the social media landscape as he’s involved with small study on this matter and I wasn’t surprised to see his lack of initial understanding. Now he knows who’s who in our world and even knew who I was referring to about two months back when I said I was feeling sad and a little bit of my own mortality because a voice had died of someone I respected and who I knew only through her tweets. He even knew that her husband had made her last post for her. Its way too granular but still impressive nonetheless that he’d come so far in a short amount of time. He certainly now knows a lot more about my psychosocial challenges!

I think about other bloggers who I care a lot about.

Tonight I read about Abigail’s second week on a new chemo that caused her blood sugar to rise like a getaway kite.

Blood sugar without the benefit of the sugar? So much b.s. so little time (double entendre intentional). We metsers unfortunately are the real control group of human trials of insane poisons that aren’t going to save our lives but extend them.

I was hoping she had the benefit I do of Palliative oncology. I have come to realize in one of my thinky thought sessions that they are the janitorial staff of metastatic care – perhaps one reason my pals seem to all leave very quickly (that and they all seem really over booked.)

I know that not all of them are the best. Just like oncologists: there’s great, good, and run far away! With so many opinions, like assholes everyone’s got one, and so many drugs to drag our slouching bodies towards Bethlehem, there’s so many bloody unknown causes of so many side effects. But at least I’ve had the benefit of the palliative teams.

I’ve seen in 4 years and 5 months of which I’ve seen as many palliative oncologists as years – to help me handle the fallout, or as Dr.Susan Love calls: the collateral damage, of metastatic disease. Big sky sized crater making fire ball sizzling meteor like problems including our family matters and psychosocial challenges. The good ones listen and help navigate the gaps between oncology visits.

No we metsers are very resilient people. We have to be. We’re not superhuman although it’s great to give our good hope to others to make their problems seem small comparatively.

I hope you enjoyed my struggles for my sanity. As a man I just met tonight as I checked into his Inn in Auburn with my beloved, he asked the most direct question I’ve been asked since diagnosis by anyone.

Mr. Inn,”How do you DO it?”

Me: “What’s that?”

Mr. Inn, “How do you stay sane?”

“I have to. I just do.”

Closure: death and forgiveness

None of us thought we’d die before our “time.” I think it means our presupposed allotted lifetime into old age, perhaps our 70s or 80s. Seeing grandchildren grow. Watching as our bodies change with age, seeing our partners creases form around the same eyes into which we’re used to gazing. Death from stage four cancer didn’t occur to me as my ultimate decider. It did erased the path to the future I’d laid out in front of me. After diagnosis I could find no place to land my next footstep.

I miss my parents these days. The path I’m on no longer leads home to them, either. Their presence represented home for me, which I only realized after they died. No longer could a path carry them back to me, either. The warmth of parental love would be welcomed. That love a parent usually feels for a child no matter what age or stage in their relationship. Death ends an irreplaceable bond and the only unconditional love most humans will ever know. So different from the lives we chose.

A parent’s love, unchosen by us, although m not always healthy but biologically necessary in childhood, becomes evident at some point in our adult lives. Hopefully we work out any resentment or negative emotional turmoil and reach a mature understanding of one another before they die or as in my mother’s case, before memory becomes only the child’s to remember, as the parent may no longer recognize heir own. Perhaps in some way Alzheimer’s and dementia take down the open door and board up the portal to the past leaving nowhere to find our common experiences.

My mother died from Alzheimer’s just before her 74th birthday. Too young for my family, and too soon for me. Money somehow takes over the priorities in many families. My family exhibited no exception in behavior. My younger brother kept me from finding out about my mother’s death. My ex husband sent me his condolences but too late to travel to arrive in Florida from California in time for her service. She wanted to be cremated, and many times in my life had me swear I’d not bury her. Mom was terribly afraid of being buried. My brother and my mother’s sister tried to stop her burial after a text message from me alerting them to her wishes. However, it was too late and the cemetery had already embalmed her. The embalming process made cremation no longer an option.

There’s a bond between a first born daughter and a mother. At least that’s what mom told me. Do you ever hear yourself speaking your mother’s words or her idiosyncratic phrases sometimes? I know I think to myself, “god, I sounded just like Elaine!” And I look like both of my parents. There’s no doubt a genetic blender swirled them together to create me. But they had very different deaths.

As different as their lives.

The strong relationship between my father and I went through its share of turmoil and warmth. We were much more alike intellectually and culturally. He handed me Kurt Vonnegut when I reached 10 years of age, Stranger in a Strange Land at 12. He fed my curiosity and introduced me to art and jazz and rock n’ roll. Never did I doubt his love for me until after his first, and only, 18-hour operation to remove about 50% of a huge benign mitochondrial tumor. The big ugly thing grew slowly and lodged itself against his brain stem. It also grew tendrils that wrapped themselves around his cochlear ear bones making balance a trick – and showing us the need for an MRI. Those tendrils seemed to reach out and give us the finger giving new meaning to #fuckcancer as if it were tweeting #fuckhumans – as if. Brain surgery takes away parts of a person’s personality and can leave anger where once was joy and humor. His anger was directed at me and my brother took full advantage of the situation. He fed my dad’s anger like my father once fed my curios young mind. Lots of influence where a blank picture of me once showed his favorite kid. I took second pole position.

I flew to Miami after a rousing bout with prediabetes and an annoying loss of mobility of my left foot. A neurologist asked if my blood sugar got tested and if diabetes ran in my family. Yes it ran rampant on my mother’s side and my sugar tested 265. I dropped 25 lbs and looked rather grayish. A swift change of diet and no more wine (gasp!) took care of that problem.

But my family is prone to rumor mongering. My brother used it as an opportunity to convince my relatives that I had to be a drug addict and they’ll choose to believe a good yarn before the truth. Most of them doubt I have cancer, so on some level it’s conceivable. Hey, you know it’s easy to hold down an executive level job for nearly three decades as a full time drug addict.

It’s not easy being a woman in a male dominated field and my long and successful career abruptly ended the day of my diagnosis. Dense breasts kept me from early detection and stress spoon fed cortisol to the hidden tumors growing beyond my breast and into my bones before it was caught. Now four plus years later, my mother has been dead for about half of this time, I consider why she was told it would be too upsetting to see me and I was not given any information about the facility in which she lived. If my life were any indication of overcoming hardships this wasn’t one I could put up a fight for from way across the country and without any family willing to support my need to see her. I never intended to relate my cancer to her, but somehow I believe she’d have known regardless of her brain turning her into someone who might not even recognize her own daughter. Maybe it was for the best I didn’t see her that way, but I’ll never know.

I do want to say this: terminal cancer allows me to clearly see through fine tuned lenses the importance of love and forgiving. And if you cannot find forgiveness then to let go and forget. I’m equally as imperfect as both of my imperfect parents. And long ago I forgot those wounds left unhealed. I forgave my own foibles as I forgave them theirs. And as quickly as that — my wounds surfaced and began to heal. As I am the delicate mix of those two who raised themselves more so than me, both abandoned me at different life stages, they also tried to return to heal their guilt, which I admit now I was not ready to completely forgive. But if they saw me now I know they’d both be very proud of me. Grace under pressure exhibiting empathy for others and a spirit of giving where there’s need.

I leave these words in this blog, and hopefully expand it into a book that I hope to leave as a legacy if for no one else but myself and as a gift for my beloved partner of 12 years – C. Yet inter-spaced between the lines and words are my parents. Having closure with them came to me as I’ve taken a long time to think about what to say in this time of my life about such a difficult topic as this. Closure happens as it should when we are ready and cannot be forced by funeral, cremation, burial or memorial. It may happen while they’re living or not. Either way closure happens for the living to lessen sadness and soothe our senses of loss because the dead, as far as we know, have their final closure with the exhalation of their last breath. There’s no forgiving us anymore. We can only forgive ourselves for them.

My father wanted a party for his memorial. He wanted me to insure it’s success, and what a success it was. My mother and his later ex wife both attended. Both commented that my dad wouldn’t have wanted it any other way. This was just as I knew as his medical custodian what he meant when he told me how he wanted to come out of his surgery and when to say no to life support. I thankfully never had to make that decision. I also know the gift he gave me were much more meaningful than money and more dear than any object could posthumously express for him. Giving me those responsibilities showed his confidence in my intellect, his pride in who I am as an adult and his unconditional love for his daughter. I can still feel it as I can still recall so brightly the 250 or so people at his memorial singing with me, “Joy to The World,” by Three Dog Night.

Closure with a parent may take years to happen. The end result of such healing can be expressed by his favorite song: by easing loss and sadness and leaving better memories to give, “joy to you and me.”

Cancer Art Journaling: Colorful words help heal my mind

Reluctantly, Ive decided to share a couple of pages from my sketchbook where I keep my not so very good artwork. I scrawl my emotions out on the pages using colorful pens, pencils, markers, paints, and whatever else handy from my growing art box.

Some days, instead of trying to get my words to fit in an essay, I find it easier to explore more non-traditional forms of journaling. One of my favorite sketches to date was to create a woman’s torso out of the letter “w” beginning the word “why.” It’s a question we probably all ask ourselves occasionally. Not feeling sorry for myself as in “why me?” But more in terms of “why not?” Why aren’t we counted? Why do we still need to die from metastatic cancer?” Why, indeed. Even if you aren’t a great artist like me, just let your colors and your hands do the talking for you. You may find out some things you didn’t even know you were thinking about. It’s visceral and gut level and it’s also a great way to purge negative emotions in a positive way and you just may have some fun.

Go ahead, be a kid and doodle. I’ve taken up trying my hand at mandalas, too. They’re not very good yet, but practicing focuses my mind away from everything and into the art form and coloring in the interesting patterns that emerge. And share them with me here if you decide to create something. I’d love to see what others are using their art journals to express. New ideas to generate ways of thinking about my life and my cancer are such a welcome gift.