How to Move with Metastatic Cancer (hint: HELP!)

How do you handle huge life events with metastatic cancer? As best as you can and with slow determination. Asking for assistance from your friends and from your family sometimes doesn’t pan out. I have a wonderful friend I made years ago at a garage sale. She was a couple of dollars short and I’d covered her so she could enjoy a few vintage ceramics and beads.

Now, six years later Des is my friend and Des is my housekeeper. Through the course of time we’d found commonality in our eclectic eye for beads and for jewelry making. We drudged through the stress of packing, readying this memory box of 1600 square feet to move its contents elsewhere. We actually live in a pretty nice townhouse. If you’d like to check out my amateur “staging” here’s the link to the sales materials including a 3-D rendering and a video.

Removing the traces of 11 years of memories as eclectic and varied as the beads I collect brings about a sort of melancholy to my heart. Des came over to help me pack as we sell our townhouse. She also refuses to take a dime because what once were services have shifted into the kindness of a friendship. She commented that I’d give the shirt off my back, which I literally have done several times in my life. She said she couldn’t possibly take money from me when clearly I was the one who needed help right now.

My husband made sure she got paid for it, since she cannot afford the time and I cannot afford the intense guilt. I’ve never needed so much physical assistance before. I guess I’ll chalk it up to age and leave the cancer for another time. But I can’t, because it’s for the cancer we are moving and due to the cancer that I need help.

All the kindness I have shown her was reflected back at me in ways I never imagined. When we give it should never hold the expectation that we may receive something in return. But as my philosophy about karma is not to do bad in the world as it keeps you looking over your shoulder at whose anger is behind you. Then you cannot see the good that’s right in front of you and you either miss these opportunities or trip over them and fall on your face.

A change of residence is very high on the stress scale

My stress adds up to just under having a 50% chance over the next two years of having a catastrophic health event. I think I’m already there so I’ve beaten the stress scale by four and a half years. But looking back I had a very low level of stress in my life in the years leading up to my diagnosis, so go figure. Perhaps the subconscious predicts stressors before they arrive to eat us alive. I was planning a change of career and the very day – March 15, 2015 – was the same day I was diagnosed in the hospital and the day I was supposed to start a new job.

You Oughta Be in Pictures!

The house really shows well – I’ll have it even more staged for our open house on Sunday. There is so much work to do after living a full life for 11 years in a home. And our home has been really good to us. I’m grateful to it for giving us positive memories, but it’s time to close this chapter in our lives and move onto the next chapter .

I know intrinsically that this house will be wonderful to whomever buys her next. It’s stable and so well cared for and we feel bittersweet selling her but we leave it with good love and positive energy. After searching for our new digs, I believe you can tell if people who lived in a house were happy and if it looks like a product of divorce or ugliness. Not so here!

The Zombie Apocalypse

In the state of California, if someone died in a house in the three years prior to selling it you must disclose that event to the buyers? I found it morbid and kind of strange. our culture’s obsession with first person shooter games, zombies, and horror films directly opposes the feelings of disgust when faced with real death or the dying. I’d think people would be desensitized to death rather than creeped out by it.

It’s a huge decision to invest into a house. Love, time, energy, money and holiday spirit, all paint it the colors of the personalities who reside inside. Our next home will likely be my last move, my last address, the last place my name will be printed on mail and arrive in my mailbox. Maybe the quote about dying twice – once when your physical body dies and the last time someone says your name aloud – should be corrected to dying three times if we include the last time your name is printed on junk mail. I bet junk mail lists last a lot longer than even the youngest people who might speak of me later given the tenacity of mass marketers.

Oh, and I’ll submit this: if the last time you posthumously receive a piece of junk mail addressed to you is the last whisper of your name what does that say about our culture when we cannot even control having our online avatars removed from Facebook and Twitter. If that’s all true, then we’re all going to live forever. A planet of the walking dead carrying sacks of marketing materials for the Red Cross and coupons for barbecue. The zombie apocalypse is upon us.

Oil and Water: Cancer and Friendship Don’t Mix

What causes friendships and metastatic cancer to repel one another like two magnets? The metastatic breast cancer diagnosis I received three and a half years ago sent most of my friends and family scattering like roaches under appliances in a suddenly lit kitchen. In our dark hours we expect relationships to hold us like a hug, not release us like dead rodents from a hawk’s talons. Roaches and rodents? Can you sense my residual resentment? Yet I must admit, my own qualities that once made me a good friend prior to my diagnosis disappeared right along with those long-lost friends and relatives.

Which way did they go?
I’ve arrived at two possible explanations for my perception of their disloyalty. First, some expressed disbelief in my stage four diagnosis (I just don’t look unwell enough). Second, their inability to hold, like Hamlet held up Yorick’s skull, a memento mori in their hands and contemplate their own life and inescapable death. Both explanations require the understanding that metastatic means incurable, and finding out that I have metastatic cancer started a timer set to explode in my body on some future expiration date. Some people have admitted they just cannot handle losing me and so opt out early from my life to avoid the pain of my death. This makes little sense seeing as how none of us really know when or how we will not awaken from permanent unconsciousness sometime in the future.

So what’s my excuse?
There’s a few reasonable explanations to rationalize my own poor qualities as a friend. The very basic qualities required to maintain close, loving relationships don’t align well with lapses in memory, time warps, and hours stolen by appointments. Not to mention the side effects of my medications and the illness’ own special effects on my body and mind, wreak havoc on my ability to make any long-term plans. Sometimes, I disappear into a dark place where no one can reach me at all. It comes with the territory, though I bounce back quickly from the depths.

No wonder I must look like a walking can of Raid ready to spray mortality everywhere I show up. I’m not too hard on myself when I admit I just suck at remembering any appointment that I forget to make room for in my near-empty calendar. My daily to-do lists look like vague carbon copies of one another. If not written down and placed in my wallet or in my notes on my iPhone, the “do’s” don’t get done.

Even still, the lapses in time and how much longer it takes me to do even menial tasks than it used to, eats up the daylight before I know it’s nighttime. By then it’s too late for phone calls I meant to return to people who reside on the other side of the Mason-Dixon Line. They get pushed out with a quick apology text message until the following day, or week, or month. Perhaps it’s even too late in some cases to save relationships that once were dear to me.

Another problem I perpetually try to solve is adopting a new way to dress to allow for the changes in my body including lost weight, lost cleavage, and swollen legs. It sometimes takes an hour to get appropriately dressed for the day. Makeup, which I wore little of prior to systemic cancer, never took this long. Dropping weight and the pain from neuropathy have led me to waer flowy, hippie chic garments, which grab attention and compliments. But the time it takes for so many costume changes and the one-way arguments with my closet could be better spent having lunch with one of my good friends. Or returning a long overdue call to my husband’s best friend’s wife or my stepsister. I love these people dearly, yet they’ve got to feel like I’m some self-centered asshole by now.

For the attention span challenged, a list!
A short list of new shit qualities brought on by my interminable disease that eat away at my time:
1. Insomnia
2. Waking up past noon (see #1)
3. Doctors and medically related appointments
4. Husbandus interruptus
5. Strange eating habits and mealtimes
6. No alcohol consumption
7. Chronic lateness
8. Fiscal challenges
9. Visible physical changes
10. Prescription medications and their side effects
11. Chronic fatigue
12. Chronic pain
13. ADHD causing #12 to some degree and exacerbated by my cancer
14. Constipation and too much time “en pot”
15. Discussions about #14

The list reads like a print out on an old dot matrix printer. It goes interminably on and on. The list of my friends, however, shortens in direct proportion to my cancer-related excuse list.

You’re My Best Friend
My husband once was my truest and most trusted companion and confidante. We had happiness and deep physical and intellectual compatibility. Our goals and values pretty much were sympatico. Now, we are simply trying to find new footing after his long bout with depression and the emotional backlash against my cancer. His dysthymia seems to have lifted for the most part with the exception of post depression fatigue. The backlash erupts with yelling and ugly words from time to time, sending me tearfully away to wonder why the fuck I am giving up my truncated life to be with him.

We try to mindfully navigate the difficult pot holes and bumps on the twisted road we find ourselves fearfully driving. We seek the hopeful sparks of joy to reignite our once close and loving relationship to find a future that works for us both. The good and the bad with my husband ebb and flow leaving me without intellectual stimulation and regular hugs, so my requirement for outside interactions changes according to our stability as a couple. If my needs don’t get met for long stretches, the loneliness becomes nearly unbearable.

It’s a paradox, while some couples make it through, others blow their partnerships to pieces like a tumor being shot with radiation. Usually the men cannot handle the loss or prior to loss, some cannot make the adjustment to becoming a caregiver. It’s no one person’s fault, per se.

Mea Culpa
I forgive anyone who could not go the long haul with me as they fall out of my tree of life. I also try to forgive myself for the above growing list of shitty excuses. Currently, I am attempting to reach out into the metastatic breast cancer community of people to find others like myself and who require no explanations or excuses. However, those I meet in social media or through this blog suffer from similar problems and time sucks just like me. And they live in every part of the country and the world making it difficult to grab coffee. The conferences coming up may provide me with a few good contacts from this neck of the woods. With the caveat that I may or may not be able to attend for one of the reasons on the short shit list.

In the meantime, I try my very best to leave a little of myself with people who come into my life and those who regularly check in on my well-being. I do hope I can reconcile all of this sometime soon. In the spirit of friendship let me apologize to those I may have inadvertently alienated and ask forbearance from those who remain.

Thank you for being a part of my difficult life. You mean more to me than you know.

Letter Rite I Cannot Must

Tear up the calendars of the days when my heart boiled over with the heat of blood lit love.

I buried myself in your scent. I luxuriate within the velvet folds of your robes, yet I am incense. I’m  curling like a cat’s tail around your head and finally come to rest in a pool filled by all of your layers.

When we slept alone. No one spoke to  me in my dreams. I shift away into black clean sleep, farther away than consciously knowing what to do, I followed the echoes home.

Late again, I found your back to me.

Now without a sun it looks wrong across the dark sea sky. I no longer know who hooked a wrong turn, and you were lost in the wrong direction. I’d forgotten how to write a postcard.

Right now with a look invented by yesterday, slip your card secretly into my pockets. You added to my risk profile a division problem with a remainder of

suffering that’s the equal to infinity which holds in its palm all of the numbers, even the odd imaginary ones,

and the one that cannot be divided except by either one of us. As two we fell into an affair of afterthoughts. Stupid throw away lines like “all the stars ever born.”

We embodied all the love ever swallowed. It was as if by will of force someone moved to live right now, and a life declared itself lit by our success.

But we failed. Tested low. Us so unaverage, painting with our blame we blacken our everythings. Spending a dollar meant more than my Cheshire smile in a body washed up on a Royal red blood tide upon the lights of the Queen’s necklace.

Failure listens through walls. It hears drumming, but shouting so much more like distant children getting slapped in shame, which is owned by a hand. It belongs to God’s voice, and you bestowed on me the right to forgive only one of us.

It’s easy to forget when you can cast the last stone during a secret ritual in a dead language. How I cannot write this down now, because I have loved only once.

My doubt exceeded measurable magnitudes, too much to write a simple goodbye. The letters cracked my body in half, and in a desert pond I lay thinking I must die just now. The dice threw themselves at my head as I woke up in a hysterical position.

Because I do remember justice’s blind compassion. You saw blindly into me and I heard you silently say, tracking me everywhere in your blue gaze – hide and never forget us and the forgotten will never find us.

So where now do I go to find you and make our new roots green again?

I can’t leave here knowing that we became each other’s closing doors. The endless slamming made us mad with deserving so much more than this.

It’s so bright outside and I must go touch the sun or the earth will split in half like an egg and lose the life we meant to live into it’s bath in the universe.

And the last sound you hear is shattering of my iced soul and it’s cradled body hitting the hot air and then gone forever.

I think it’s brave, too.

For me, brave equates to inner strength even in the worst of times. I’m touched by my dear friend’s consideration of my struggle and it’s the best possible compliment I’ve received. Thank you, Jens aka Count Lurpak.