Metastatic Cancer Awareness Day: 114 more will die

In the United States, 40,000 adults died last year from a particularly horrible terminal illness. The same critical disease queues up approximately 155,000 into a lemming line and eventually fall inside our graves. Remarkably, exact statistics aren’t available to understand how many people died as a result of metastatic breast cancer (MBC). Many of us lemmings in line, we’re not counted in the statistical data. For instance if you’re diagnosed this year with any stage of primary breast cancer for illustration purposes say 15 years later you’re one of the 30-40% who will eventually be diagnosed with MBC, you’re not counted in that number because you’ve already been put into the pool when first diagnosed with stage 0 and I-III.

Furthermore, if you’re “lucky” and you survive MBC more than five years and we’re diagnosed de novo (from the start) then there’s no formal tracking at least not in the United States. I suppose it’s not as interesting since it would sound less sensational to the pharmaceutical companies to track 15% give or take. Not many of us live five years beyond diagnosis – the majority die in an average two and a half years.

You bet I’m glad that we had one day. Wow! For those 30% who will find themselves diagnosed with MBC – the vocal metsers or metavivors have an entire day to explain what stage four metastatic breast cancer really means. To try to define the extent of collateral damage to our lives. To leave women (and men) with a better understanding of just what it means to live with an incurable disease. To hear these phrases over and over, “but you look great!” or the ever popular “you don’t look like your have cancer.” To have people who were once close you actually not believe your diagnosis. For family believe you’re actually lying about having MBC since you simply look too good to have any disease at all.

Just a lazy, early retried, government money sucker. I wish. No, I don’t wish. I do wish I were not laden with dense breast. The tissue in my fun bags is indistinguishable from the blood sucking cancerous tumors that started whittling down my life to a stump nearly five years ago. The years when the discussion was about indeterminate mammogram and ultrasound results. The years just before 3-D mammography might have saved my life. If you so happen to have dense breasts like I do, insist on more diagnostics and a physician who’s better at reading radiological results than the abilities of an average technician or your general practitioner. I wish I’d known more then. But wishes don’t often translate to reality once the blade has come down in the guillotine. My tumors weren’t large and still have no lymph node inclusion. It wasn’t law yet to notify women of their breast density. According to areyoudense.org

Adding more sensitive tests to mammography significantly increases detection of invasive cancers that are small and node negative.

I wish either sociopathy or borderline personality disorder were my diagnosis instead of invasive ductile carcinoma with osseous metastasis to the bones, liver metastasis, multiple periocentesis to drain asceites fluid buildup from my abdomen, and a nice size tumor that pressed on my duodenum and would not allow any food to pass from my stomach to my small intestines. My body is an amusement park for cancer, an e -ticket ride at one of the many Disney theme parks. This one is Cancer Land where the characters aren’t cute and they come home with you for the rest of your life.

I’m on my third line of therapy. Xeloda in 2015, Ibrance and Fulvestrant in 2018 and currently, and Taxol in late 2018 and the first six months of 2019. There’s still lots that I can do. I also take charge of my own health and my oncology teams. I’ve moved to a less stressful more peaceful place. But I’m lucky as I know many women do not have some of the resources of a partner as I do. But if you take one message from my day late post, insist on the right level of detection for you even if you are unlucky enough to wind up with a cancer diagnosis. It may save your life.

No poem this week. I’m a little down and I’m going to pick myself up as I have done every day by drawing. I’ve been Zentangling on every piece of paper I can find. It calms me and I keep my mind really busy when I need to – I highly recommended it. I couldn’t draw, either. But I can now. It’s amazing what we can do if we put our minds to it.

One Word Can Make All the Difference

So, there’s wonderfully good things that transpire to create a solid high of energy around us that heal. Then I think neutral stuff happens all day long like stopping at a red light. It can be a negative event if the conditions we perceive make it so: e.g. I’m late so this might make me later still; I have bad luck. Outside of all perception and control things happen all around us: environmentally, socially, scientifically, etc. We assume we have some way to partake in those events or that they conspire against us to create a negative vortex or a positive window or door to look out or step through. It’s vague. But the vagueness is very interesting isn’t it?

Perhaps you feel like cancer or disease is in some way your fault or a conspiracy of circumstances. I actually believe it’s both. In my heart I now know there preceded my cancer diagnosis events that were incredibly stressful creating a hospitality center for my cancer to take up residence in my body. It’s not my “fault.” There’s no way we can know just what dis-ease lie in wait for us except for the occasional discordances like diabetes, which is generally genetic. However that’s controllable with diet.

We live in a diseased environment that much like our bodies under stress develops dangerous conditions in which nature slowly dies. In some sense I’m glad I won’t be around to see the death of our planet as we know it. Depressing. But truth be told did we need the fluoride in our water? Did we need all that corn? Do chickens need such big breasts that they fall over? Does organic even mean without chemicals? No. None of this is true. But we are fed a body of fear to add to our newly stressed out lives and we wonder why breast cancer rates since the 1950s have increased from 1:40 to 1:8 (or 7 depending on who you ask). That’s a gigantic rate of increase in a very short period of time. And not to get too much into numbers but only 5% of cancers are genetic. Including breast cancer.

So what can we do about all this? Well I am headed back to Commonweal in Bolinas, California in two weeks to attend my second session at the Cancer Help Program. (CHP information)I’m giddy with excitement and literally cried tears of joy upon receiving the call last week. And we are in the midst of closing on our house and finally finding a new one. But it doesn’t have to be stressful. I sit in acceptance of offers of help from a professional organization expert hired for me by my realtor, with C’s assistance and the enlisting of a moving and storage company if it comes down to it. I’m not giving up the opportunity to move to a new home with my life partner and best friend to drag the same shit along buried deep in a dark box from my internal attic. No point. It wasn’t working for me before so it won’t work going forward.

The first week long program started the healing in October of 2016. But I knew I wasn’t well and wound up spending a week in the hospital upon my return. C was at the apex of his depression and there was no relief in sight. He was hospitalized about two months later as well, for his anxiety had gotten so bad that I couldn’t in good conscience watch him deny his condition any longer. A long road to healing began for us both individually and as a couple.

But something seemed really undone. Like a frayed rope or like confetti or ticker tape after a parade my mental streets need sweeping. I called one of the founders of the CHP in March hoping to get to the June week program before the summer break. Only eight people can attend. September had the right mix for me with the other seven attendees. June just didn’t play out.

I am blessed again to benefit from people I love and respect and who gave me a path to find my way to new meaning. The most profound statement of healing cane from one of my private sessions with Michael Learner, the founder of Commonweal. He said, “Ilene, why don’t you call yourself a writer? That’s what you are.” And a simple statement changed the course to bring us here. Today.

I am a writer headed back to the Cancer Help Program in two weeks. In the meantime I hope to post one more time to respond to Nancy’s Point and her Blog Hop. I feel like a bad friend but I know she understands.

I’d check out her blog if you’ve not been there yet. I love Nancy’s way of explaining the emotions and medical conditions about having cancer and losing her mom to cancer as well. Take the time to read her stuff it’s worth it. She’s also written several helpful books especially for those new to this cancer culture that you’ll welcome even if it’s old hat.

And with that I leave you with my love and my light and a gentle goodnight and a poem from Robert Frost:
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference

Uncertainty

Life’s great deceit
The human equalizer
Is death, certainly.
No announcement from our pilot
No time of arrival
No maps of the place we land,
And what happens
Afterwards
All mysteries, all.

He teases us with a whip sometimes
tickles our insides with a feather.
Cancer’s uncertain effects
Of diagnosis of life or death
Or would it be a stretch
Of the imagination
A Jewish woman may conjure up an image
like this:
I’m in a concentration camp
Looking down a barrel of a CT scanner
Like waiting in line for a shower
But the lot of us wind up
Tossed into a gas chamber.

A body transformed at the whims of science
For the good of us and the bad of the rest
And for those who cannot sleep.
My head droops on my neck escaping the air
Closer to the ground where the poison
Waits snaking up my body. A fat brown boa,
twisting and constricting
Suffocating my peace with a promise:
Please squeeze hard.
For thick with the dead
After life’s passing glory
The campaign marches on.
Beating time tracking and tracing out
Torsos with cold leather fingers
They drew my blood then sent me
To the mass grave. I fell in
Losing my balance.
On the bodies of giant
Piles of shoulders
I become faceless in a crowd
Of numbers up before mine.

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. http://www.1481carrington.com/

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 https://www.stress.org/wp-content/uploads/2019/04/stress-inventory-1.pd

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.