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.

Caregiver Wishlist in a Nutshell

What an inspiringly awesome graphic about the under appreciated carers. I like the word “carer” far better then caregiver. Carer connotes a choice, not a foist. In United States it seems we bury the carer along with the patient’s cancer, either by the patient becoming disease free or by death. Let’s all take a moment to think about and appreciate how many carers we have and for those of us who are carers let’s look at the infographic and check it for our own needs and see if we’re covered. Comments would be very informational for both patients and carers alike.

#metastaticBC #breastcancer #caregivers

I Asked

I’m afraid. Not that it’s a good sign for anyone but ascites isn’t a good sign for me – it’s my internal alarm system letting me know my cancer is badly misbehaving. My stress load had gone up and skyrocketed for reasons I don’t yet fully understand. My physical “self” sent a flair up to alert me that I had to make some dramatic changes. I knew. But what‘s holding me back and why had I allowed it to continue for so long? I’m not sure I need to define what the “it” is, but it is definitely the 11th hour and I could feel it. Change or die.

On and off I’d been in the hospital since thanksgiving 2018. Roughly the same time as last year once I’d returned from the Commonweal Cancer Help Program. Looking back in that period with the clarity of hindsight, my need to feel loved and approved of by my partner upon returning from the CHP, and by wanting to transform him and his depression, then going into year three. At Commonweal, in the loving-care of people who needed no invitations to a hug, I’d neglected myself again. How the hell did I do that this time and at what level of self exploration did I need to sink into to find the answer to that mystery is as unknown as a good Agatha Christie Poirot mystery.

I suppose to show him somehow he could do it too, he could find clarity within an almost unbearable situation and even find answers to fundamental human questions plaguing him all his life. I’m a firebrand of calmness. Oxymoronic yet I’m so excited to share everything. My excitement caused him to draw further away for the last time. I’d never really see him again after that. Perhaps he’d lost me and not vice versa. But we could have gone together to the program, and I know if he’d tried we’d be a vastly different couple than we are. But here I find myself: sick, alone, afraid, and as all cancer patients eventually find themselves unable to financially support myself.

In all I’d learned I’d still not fully understood that unless I helped myself to health, I’d not live to see my own gifts fully realized. (Protected gifts by the light around me and had been given as a mandate that I did not carry forward as I was gently blessed and nudged towards about three years ago – more in a later chapter on this story.)

I asked him a serious question around 2:00 am December 15th one day out of Stanford hospital and a first round of Taxol:
Are you in this with me?
Yes.
I mean changes have to be made – I must or my life hangs in the balance.
It always does (snidely) just nock it off please.
Craig I’m serious this is serious.
Whatever.
No it’s not “whatever,” it’s my life.
Oh, just shut up.
No I won’t shut up and you mustn’t speak to me that way.
I won’t speak to you then.
That’s not what I meant and you know it.
As you wish.
What?
As you wish.
I wish you were in this with me it could help you, too.
Just go to sleep.

The word whatever should be struck from every dictionary of human language as it evokes apathy and strips bare the spirits of its joy or at the least enjoyment. I’m not talking, “which sushi restaurant?” “Oh, whatever is on your way home honey.” That’s a perfectly acceptable answer. I hope my need to explain myself to the level of granularity of a tight shot in a David Lynch movie as my own self esteem begins to heal as so often his characters do not. There’s no great redemption in over explication, which simply takes a conversation and mangles a cogent discussion creating an active diversion and leaving one scratching their head over how they wound up in an unrecognizable blathering. Of course it’s easy then to say “whatever.”

Something had just snapped in me and I know if I throw myself into the world something will happen. I will die here in every possible way, but out there I can be saved. I believe that now more than ever. After I woke up yet again to an empty bed, even I can see the required ingredients to form the semblance of a relationship are probably unavailable.

It’s myself – not him – who’s keeping me in this carcinogenic hell where I live on Carrington circle (circle! The irony had escaped me until that moment). I can make a choice to carry on with optimizing my mind, body, and spirit for LIVING or I will die running around a circle of things that never change.

I began reading “Anti-Cancer.” Just having read a paragraph regarding ascites in mice and the case of a Mighty Mouse had pulled my brain out of a fog. It scared me to the point of nausea. I’m going to have to find love, patience, nutrition, a living situation, and give for the sake of my life. The gift was mine to throw away or get busy saving.

Now this is clear as anything had been before. It was time to reload my arsenal and wake up.

NEADed and Blessed

I am NEAD.
Yesterday after visiting with my oncologist at Stanford in San Jose and a week of repressed scanziety – I had a PET CT Scan last Wednesday and let’s just say my perky miss Cancer self was a little crabbed than usual. Dr. B entered the new room in the new facility where I receive the bulk of my oncology services, palliative care, infusions, and psychosocial assistance. He and my other physician enter through sliding doors behind the patient visitor rooms from a bustling scene of nurses, nurse practitioners, technicians, and I imagine a scene from the 1984 movie, Brazil by Terry Gilliam, of which film writer and critic Pauline Kael wrote:

It’s like…a nightmare comedy in which the comedy is just an aspect of the nightmarishness.

An apropos description of waiting to see the progress of stage four cancer, I might add. This time, though, good news. Nothing new, nothing grew and no evidence of active disease, or NEAD. I haven’t heard those words with respect to myself in the three years since my diagnosis. Others have reported NEAD to me on their progress. I put on my happy supportive persona that I drop like an unwanted boxed pre printed drug store Halloween costume, the kind my mother would buy for me when I was seven or eight years old. The kind that left me in tears desperately wanting to make my own instead.

Admittedly jealousy and self pity aren’t unusual emotions to go away from those communications with, at least for me. And I feel selfish for those emotionally shallow responses, which I keep private and away from judgement. If the best we #lifers can get is NED, no evidence of disease, I’m just one letter away at least for today. I am blessed to have access to world class care and the love of professionals, my few friends and the small yet effective support structure I’ve built around me as I might a scaffolding around my fickle health that shifts back and forth between hating my body and giving up to short reprieves to allow me a chance to feel free of the shackles of disease for just a while.

I am certainly blessed.

An Apache Blessing
May the sun bring you new energy by day,
May the moon softly restore you by night,
May the rain wash away your worries,
May the breeze blow new strength into your being.
May you walk gently through the world and know its beauty all the days of your life.

Liesl a sister writer and reader of this blog, shared these inspirationally soothing words and hoped they would help me and others navigating cancer. In this world it’s important to remember some of the dearest gifts bear no financial cost; the dollar value does not equate to the intrinsic value. Regardless of the devastating financial costs of cancer, equally as high are the devastatingly effective cost of truly feeling alive. Words of inspiration alleviate some painfully high costs, such as disappearing friendships or my ability to travel outside of the country on a whim. Although now these seem so massively cheap and unimportant.

Thank you Liesl for sharing this blessing, although you did not ask for any credit for doing so. I still want to thank you for reminding me of why I keep writing: relatable experiences lift the eyes of others facing or looking back on major shifts to our lives, not only Cancer.