A Fair Question

Whether or not you’re one of two people with a cancer diagnosis or one of the 40% of that 50% whose deadly prognosis of a metastatic cancer came down like Maxwells Silver Hammer, please ask yourself one simple question. It’s fair for me to ask you to ponder this for five seconds or five decades, if youre an insightful type.

It’s also a circumstantial question with many dependencies such as family, whether or not you’re a parent, religiosity, cultural upbringing, current socioeconomic and financial positions, physical and mental health, risk aversion, spontaneous adventurer or ardent planner, shopoholic lover of material belongings, artist, creative type, traveler or homebody, number of dependents, caregiver, planning capability…well you get my point.Forget all that and give yourself a green field and ask yourself this: if you found out you had a terminal illness today and you had no real idea of when you might die but you’re going to die sooner than later given there’s currently no cure for your disease what would you change about your life as it exists today?

Would you change anything at all? Would you leave your spouse your family your children? Would you travel the world? Would you quit your job? Could you quit your job? Do you have enough money to just take off and leave to follow that lifelong dream? Do you have what’s known as a bucket list, or as I like to call it a kick the bucket list, that you’d like to check off? What would you do? For the most part I bet you won’t or cab’t change very much. “I like to change a lot,” you might think. But alas as in most situations not much can or will change. That’s because your life as it exists now is your life as it existed before you were given your prognosis of death.

A Bifurcated Mind

What metastatic cancer has taught me is that there are two worlds that exist: the one that you had before your diagnosis and the one that you had after your prognosis. Chances are you’ll have quite some time to think about this question, which may keep you up any number of nights a week. You might suffer from insomnia, wondering if you’re doing the right thing or if you’re doing the right thing by the people that you love. Perhaps you don’t think anyone loves you much at all. The fact is they probably do but maybe you have low self-esteem and you just don’t feel it. Perhaps you hate your job and you want to quit. This might be a good time to quit actually. Leaving my career, which I didn’t necessarily want to, turned out to be a rather good thing for me.

I found out that I had an artistic side and I followed it. I also followed my hunch that there was a lot of waste going on in the world and that for my own special purposes I would sell things that were not made from new materials because they’d be all antique or vintage. I feel pretty good about that. But not much else in my life changed.

Except everything.

So ask yourself this question what if anything if you were given a diagnosis of metastatic cancer and a prognosis that you would die in the next two months to two years to 20 years: what would you do differently with your life? I leave you with this question on the last day of the year. Perhaps you can write your New Year’s resolutions for 2020 with it. 2020 vision is considered a great form of hindsight isn’t it?

And yet have you thought about what you might do for the next two years or 20 years if you have them? I can tell you this much, I certainly don’t do any New Year’s resolutions anymore. In fact last year I wasn’t supposed to live past February but here I am so…

Ask yourself this question what would you change about your life today even if you weren’t given a prognosis of death in the shorter term than you thought you had. If you can change some things maybe you should ask yourself what those things should be? Then if you were given a prognosis such as I have, you wouldn’t have to ask yourself this question night after night day after day questioning the people around you looking at them as though maybe they were your enemy or maybe they were not. I’m not sure sometimes but I will say this I do have some things in my life that I wouldn’t give up for anything.

I might change small things, huge things, things that might make a difference for other people or things that might just make a difference for me. I guarantee it’s a combination of a whole bunch of things but you’ll have to think long and hard about it. Give the question justice because it’s your life.

So, you’ve been diagnosed with a terminal illness and you must ask yourself the following question: what would you do differently in your life or change about your life so if any given week might be your last you’d be happy with it or at the very least okay with that week?

“That’s not a fair question.”

My husband reacted with a sense of injustice, but I don’t agree in its fairness. Just as there’s no stupid questions…No, every day isn’t a great day…that much is true.

However, built upon the foundation of modern western culture insure to that, due to no fault of our own, all of us were born into a time of rampant materialism. Noting we buy delivers on its promise of satisfaction. There’s the cliché small print that spells out a guarantee of no satisfaction. What it does guarantee: you’ll never see any money back should anything go awry. A broken warranty means by simply using a product said guarantee is null and void. A manufacturer’s guarantee is akin to cancer in some ways.

By living in our bodies with the environment at a time of great threat to its own mere existence, we are swimming in chemicals and stress and we’ve not evolved to handle it nor should we.The point I’m trying to get across is that by merely living in a physical body we are very highly susceptible to illness and specifically cancer. The warranty on our physical body while living in the post industrial, sedentary, sugar infused world with melting ice caps and chemicals in our air, water, and food there’s no guarantee of any kind. Now, keeping that in mind, ask yourself what would you do differently if anything given your own personal special circumstances even if you’re not hiding “a cancer” if you were to be diagnosed with a terminal illness?

By the way, I deplore that phrase – the article in front of cancer removes it from our body’s boundaries giving it a life of its own of sorts.

Regardless of all this philosophical pondering just be happy. The year 2020 is my year of hindsight, to help me find the foresight, to live in this moment in a way that’s just right for me.

Stay Tuned…

You’ll find my answer to this question in: A Fair Question Part II.

My heart and my soul go into this blog and these words and to the people who read it I thank you and I hope you continue to do so. I hope you leave a few more comments in the next year. I love your feedback. I really like hearing from you so I can feel as though I am not writing a little vanity blog. It’s healthy to receive both criticism and accolades. Your interactions let me know writing on the cancer bus isn’t for nought. By the way I consider you my friends and my extended family so here’s a big hug.I mean, for fuck’s sake, if you read this you know some of the most personally intimate things about me. So I trust you’ll ask yourselves this question and put some time into answerinng it. I guarantee if you’re not metastaticly inclined, you’ll have a much better idea of what it’s like to have a death sentence. Most of us can’t do much but focus on remaining alive, keeping a few people around us who care, keeping our lights on and some gas in the car.

If we are lucky.

All my love,

Ilene

Holiday Cancer Cheer

There’s no Cocktails that really make it onto my holiday menus since my cancer diagnosis. Those halcyon days of fine wine and creative concoctions are long gone. So the lack of drink kind of makes these dry holiday seasons well…dry. In light of that I thought I might share with you some of my anecdotes about how I handle all the stress and the isolation of cancer and the holidays. I’m taking a bit of a different twist on your usual cancer blog fare.

Perhaps you can take some key points away and infuse your own drinks with some of these interesting ways of handling things that are rather uncomfortable and can be somewhat depressing. I find the holidays carry as much weight as all of the past 12 years of being with my beloved and every stinking holiday season beginning about two weeks before thanksgiving and ending just after New Year’s Eve, when I can finally relax.

After 54 years alive and 1/4 of those with my husband and most of those 12 years with two adolescent growing to teen boys who expected incredibly nice, increasingly costly gifts, here’s some practical as well as some less pedantic, more spiritually-based techniques of handling the cancer holiday blahs.

  1. Learning to deal with bodily functions such as farting in public or knowing every clean bathroom in about a five mile radius from the house. Me: farts in line at the grocery checkout. Clerk: looks at me like this 😑 Me: Looking down, holding out my index finger, as if to scold a dog or a small child, and saying, “bad dog! Oh you know these support animals. I should cut down on his protein shouldn’t I?” Clerk: looks around sees no dog. Rolls eyes and elbows the teenager bagging my beets and ginger and tumeric. Me: Fart again, “bad boy!” looking around embarrassed and hoping silently I’m in range of a clean bathroom. I laugh to myself and muse as to why it has to happen so often at the grocery checkout. I stab the credit card machine with my chip up hoping it’s not declined heaping additional facial redness on top of that brought on by my intestinal eruption embarrassment. This year I am hoping for a few Silent Nights rather than personally sounding like I am playing a one -woman band version of the entire horn section of the college football show at halftime.
  2. Don’t wind up in the hospital. I don’t know if it’s the stress of the holidays or if it’s thinking about the people who haven’t called me or who might call me or who might not call me on the holidays and all the stress that goes along with that and what to say and what they’re going to ask. Perhaps that stress is all just coincidental to becoming ill enough to wind up hospitalized. However, every year this time of year I have been in the hospital for the past four years. I’m hoping that this year the hospital is not in my holiday plans instead of a nice trip elsewhere. I don’t consider the hospital a vacation. Nor that nurses are there to serve my needs and to wait on me hand and foot or to give me facials and massages. Although I wish they would instead of waking me from thin skinned sleep and asking me for my vitals over and over again.
  3. To decorate or not to decorate? Do I have the will to actually put the lights up get a tree haul it home put it up and hope that Craig will be there to help me. And then adorn it with all the decorations that I have collected over the past 12 years for family. I’m not sure that I’m going to do it this year though I did find a very cost effective retailer (Big Lots has 18 feet of white outdoor LED rope lights for $12!). I think I’d rather enjoy the beauty of nature all its own and use the stars as my decorations this year. First it’s a lot cheaper and second it’s a lot more beautiful and I appreciate them all the more every night that I’m out here and it’s not raining.
  4. Getting up before 1 pm to shop for gifts on time and with a bit of meaning for those who will get them. Probably late due to not getting out of the house in time to get to the stores or lack of personal financial resources. Wake up! I yell inside my mind, where no one can hear me but myself. As I reach for my magic rope, one I imagine falls from the ceiling above my bed, generalized bone pain and neuropathy in both arms, I’m prevented from reaching the frayed and knotted jute twisted above me. While the painful tingling in my hands caused by nearly five years of chemical therapies wakes me with a jolt I’ve no problem staying awake.
  5. Lose the guilt. Many days guilty feelings wash over me instead of a restorative shower. I feel guilty for lazing about and wonder if it’s even necessary to feel ashamed. People who count on me know I have morning challenges, or in some cases afternoon challenges. My schedule shifted later and later as we closed in on moving out of our house in San Jose. It’s amazing how much crap people accumulate over 11 years in one home. I realize too that 11 years is the longest span of time I’ve lived in one house. And now I start afresh without the guilt. I have new friends that don’t know me as I was before and therefore don’t have expectations of me as I wants was. They know me now and they like me as I am now. So I intend to drop the guilt this year and also if my friends who live in San Jose or back on the East Coast don’t understand well I suppose they’ll just have to live with that. I won’t live with the guilt anymore that’s for certain.
  6. Listen to more music. Music fills me with joy. I sing many songs I make up on the fly to my cat, Simon. Most of them are lullabies, as he seems to enjoy these most of all. I’m definitely guilty of singing loudly in the car and of course in the house. I also sing in the shower and pretty much everywhere I can. I’ll even sing to the music on the loudspeaker in the grocery store. Hopefully the same clerk who hears me fart does not hear me sing.One of the things that was absent from our lives for about five years while my husband was depressed was music. Music has refilled our house, filled spaces that were left void of sound and reverberates in our ears words and tunes that we both love to listen to. Right now we just listened to that one jimmy our Canadian trio Rush’s Fly by Night and it’s an awesome album. The title song is about leaving the past behind you with life leaving us “no time for hindsight” and that something I also intend to do which is not ditch the music from the past, but…
  7. Leave all of those past things that I can do nothing about behind me. Not making much ado about nothing. That’s something the cancer taught me to do, which is to leave the past where it belongs. In the past. That alleviates a whole lot of guilt (see above number 4) and it also brings me to my next point which is…
  8. Do not hold onto expectations of the future. With cancer you cannot have expectations of the future even if the future is tomorrow. Plans change ljconstantly. My health changes constantly and everything changes constantly around my health. It’s very hard to make plans and keep plans around something that is constantly changing. Life should be like that anyway: a little more spontaneous and a little less planned. But that’s hard to do around the holidays when people want to make plans. Further, when I was forced retirement I really didn’t have to plan my days anymore. I don’t have to live by calendar except to show up at the oncologist and get my chemo and make sure that I get my prescriptions on time. I also have a small business and I do need to ship my items on time but other than that I really don’t have to keep much of a diary. The only real diary I need to keep is a personal diary.
  9. Isolation can be good for writing not for the holidays. I wonder to myself if the reason I don’t hear from people is that they’re wondering if I’m dead or too ill to speak. Or maybe they think I’m in the hospital which I usually am this time of year. Or maybe they don’t want to give excuses for why they haven’t called or called back or texted or texted back. But it’s all OK it really doesn’t bother me all that much because honestly I’ve determined that if he will don’t want to call me I’m not going to pressure them to do so and I’m certainly not going to pressure myself into trying to call them. I don’t get very many cards anymore he used to get quite a lot. But now one or two trickle in maybe a half a dozen for the entire holiday season. Part of this has to do with my husband being depressed for the last five years and part of it has to do with me having cancer for the last five years. His depression comes and goes, stage 4 cancer just comes, and that’s about it.
  10. Live. Just live. And have a peaceful end of this year. I hold out hope. I’ll always have it for myself and for all of you. Go in peace. You deserve it.

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.

Euphonious Cancer

Tonight about 7:00 after chemo, I fell asleep leaning back in the driver’s seat of my Mini in the car park adjacent to Stanford South Bay Cancer Center. A deep, unpredicted snooze just after my second to last Taxol infusion. * Apparently, I’m deathly allergic to yucca, the tree Taxol is extracted from, and I stopped breathing during my first full strength dos back in January. As a result of this not breathing nonsense, my oncologist’s orders now include 50 mg. of IV Benadryl through the three pronged port in my right chest wall.

Then comes a hard, dreamless nap. Sitting snoozing the clay gray recliner, tucked under a nice clean warmed blanket, a soft gentle breeze of the air conditioner woos me toward unconsciousness. 30 minutes later, the nurse wakes me to ask if I will, “recognize my name and date of birth by reading the print on the bag,” which I slur aloud for her to decipher and back to lala land I go.

Waking to the sharp beep beep beep of the monitor letting everyone in the four story building know I’m done, a nurse I’ve never seen before rushes over startling me. She asks if I’m okay to drive. Then she begins the process of unhooking my port and rushing me out of the center. I can hear the always annoyed charge nurse asking her, “is she still here?” “YES!,” I answer for her. Jeeze. Even five boxes of gourmet brownies and blondes weren’t enough to make my twin final infusions more pleasant. No brownies for you, lady!

In the car park, where my second nap took place, sometime between 7 and 8:15 as I slept, my neighbor texted to warn me, after I’d visited last night with her and her teenaged son, that there’s a very very bad flu infection that her son caught and that I should stay home and out of public for a while. A week she advised. Her son had a 101.8 degree fever and projectile vomiting, so as they waited at urgent care with other flu sufferers, she texted me. Her tone was somewhat panicked; likely he was contagious the night before seated a foot from the television with headsets on playing a first person shooter online video game. I sat with mom about five feet away yapping for about an hour begging her two dogs to stop jumping on me and scratching the shit out of my legs.**

I arrive home about 8:45 starving but sit down to write a poem, sandwich instead of a proper dinner in hand. I’m immediately happy with the result, inspired by a post on Robin McGee’s blog, the book eponymously named for it, The Cancer Olympics, she includes a song with each post to evoke a mood or her feelings or to create a more upbeat environment. The post is a goodie and so is her book. Recovery, Homecoming, and Gordon Lightfoot’s Your Love’s Return”

This life with cancer, with it’s forced retirement, compromised immune system from the treatments, fatigue, pain, and a life full of unknowns and mysteries, stress and anxieties, I still have hope. A wonderful writer and psychological counselor, Karin Sieger ‘s blog includes a post from a request to submit favorite inspirational poems and I submitted three. Read her inspiring quotes from cancer survivors and thrivers here .

This is for you Robin and for you Karin, for enriching my metastatic and making it a little more livable.

Euphonious Cancer

Invading my body with water
Washing my mind with a drink
Cancer infuses by rushing to slaughter
Every cell, every organ, everything.
My dreams rust and squeak as I walk
In a dream impossible and unknown

By erasing misbegotten memories
Ugly faces of the impossible and unknown
Whose lifeless bodies lie dead in an armory
Too heavy for the metal, I’m warned.

Sickness steals sleep under conditions
Of cancer, impossible and unknown,
Squatting inside cells without permission
Living on the land of the corpse I called Home.

A map I drew of places impossible and unknown
Lines and roads point directions to one light towns
Etched by the hand of a writer in stone
Furiously chiseled before the words “we found…”

Passing by shores waves slap and erase
My memories of flights touching down
Furiously scrawling recalling the places
Using hands, now impossible and unknown.
Using hands, now impossible and unknow.

*As I sat writing this post, I find a new spell checker auto correct update forgot to learn the name of my treatment, now changing “taxol” to “taco.” Who wouldn’t rather eat tacos then get chemo infusion of a derived therapy from the bark of the yucca tree.

**Why do people feel the need to defend a pet thats untrained and causing some damage to a houseguest? How about it takes me 2-4 weeks to be rid of the blood blisters caused by those nails.