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

The Impeachment of a Comic and a Lose for Medicinal Laughter

Louis C.K. as a Sacrificial Ram in a spectacle-crazed narcissistic society

I need laughter. A self-prescribed medicine that does me wonders and there are very few comics who leave me in stitches of the good kind; not unlike having “the good kind of breast cancer.” As I write here in California, my healthcare costs rise with the sun, day after day, along with my pulse rate. The expenses to treat my terminal case of incurable cancer continually rise higher as a result of the current stupid administration run by a pussy grabbing, verbally abusive, somehow illegally elected president of a society looking for sacrificial mutton chop to gnaw on publicly. And without the right to a defense by a legal system in short supply of honest practitioners.

Memory strikes at the strangest of times. Thinking back about a dozen years ago, in a corporate building in the heart of Sunnyvale, sitting in my now gone office and executive technology strategist career, I typed up an opinion piece for our blog on customer experience about Louis C.K.. The piece centered on retaining artistic freedom, one brave person at a time, thus creating room for great experiences. Louie controlled his channels of distribution for recordings of his stand up shows and I was elbow deep into intellectual property rights at the time. The days right before Net Neutrality was enacted by the FCC (recently dying a whimpering, bleat of a death in the same public works department at the bequest of our aforementioned president and deceitful grabber of pussy.)

Louis publicly, though not rudely, turned away from the Machine as the Machine continued churning out cookie cutter emoji shit piles of same sounding jokes. Mr. C.K. killed with his brand of self-deprecating humor for us to feel a bit better about our own shame and small mindedness.

This same man is temporarily finished with a career, since he got the hook off stage for masturbating in front of several women. He didn’t cower and deny it. In fact as the proof of his obscene behavior towards the victims became public, we can recall he allowed all of us to peep through a window into this behavior in nearly all of his stand up routines. Comedians absolutely need attention, or they’d pick another career. But attention to alleviate deep melancholic sadness, some with deep depression, and the loneliness of their lives splayed out for us, well…like a Skype call with a guy crying as he masturbates to porn. Our own loneliness is reflected in their very presence by our own entertainment choices; we need to laugh at someone else’s misery. I think my own mortification lies somewhere between public hypocrisy and the bullshit people believe to have come from the real deal, no questions asked. Lest we forget our “elected” POTUS, who himself is a vagina pinching bag o’ wrinkly combed over Dorito dusted testicles.

Yet my ginger headed comic handled the situation as peacefully and thoughtfully as one could, with regret and a promise to listen, not to talk uncensored, open loop and without a self correcting blue pencil, as he enjoyed doing prior to public humiliation. However, I hear no discussion taking place between the sexes, only silence and one way monologues at the bobble heads reporting the now fake media and news.

To listen after a career spent providing some of the neediest of us with soul saving laughter, Louie C.K., approached this situation without denial of his actions and an apparent understanding of his responsibility for the situation. His responsibility is that of anyone who’s viewed from the bottom of the ladder as part of the desirable star making comedy higher ups. It was in these women’s presence, in the glow of their admiration of his comedic power, to hope that by watching his testicular spectacle, it would launch their careers from the bottom of the ladder from which the man himself once hailed.

So now selfishly I, who needs laughter to heal my aching body each night, am punished for his generally unconcerning, sexually self consensual, and slightly weird actions.

Yet, as a woman, even under the influence of two knockout drugs slipped into a drink by an unnamed investment banker who tried to make off with a little of my CEO poon, I said absolutely not. And he didn’t. He wound up with a thousand dollar hotel bill, a very remorseful call to my then fiancée to tell him personally why I was there, and a very embarrassed early departure.

I say to these women – if raising several million dollars to fund a 2,500 person payroll that week wasn’t worth me allowing a disgusting troll to molest me, then you could have slapped your own douchebag and walked out of the room while blowing a whistle then and there. We are free to go, lucky for us, without a hand on us and tell someone or even get psychological help for the man who tried to jack off in your presence as a way to stop it from happening again. Strength lies with those who have courage to speak up, and even do it privately if there’s concern about the future of your own careers. I hope you all made it on your own talents and did not skate upon the frozen pond of masturbational output of a depressed yet entertaining stand up artist and comedy writer.

So many men of vastly more power than his own live in a state of Denial – I believe it may become the next territory of the United States like Puerto Rico. That’s a state where power and greed align like Venus and Mars, along side sexual abuse and the fossil-fueled decay of western civilization. With the pretense of their rights and without understanding of the depth of pain of the words they shared years later and personal corrosion by public influence upon another very insecure man and his family, including his children. Then and now I say these young women’s desires to become the next of the famous, far outweigh the currency they now feel denied of receiving by rising on the heels of the heavyweight comic. His very sad, but not very deplorable actions showed the tears of the proverbial clown. The accusers’ own greediness sits shelved, some set aside with dreams of winning a Golden Globe, a Grammy, aPalm D’Or…

I pay my attention to victims of Harvey Weinstein, Woody Allen, Bill Cosby. I pray for the broken dreams and hearts of those nameless and faceless women who were used and abused by the studio system in the 40s and 50s long forgotten and hardly acknowledged.

Louie knows his own strength, certainly. I don’t know him personally, yet his raw comedy brings up a certain kind of unknown/ known for me. Stand up comics, actors, writers, especially exceedingly talented ones, still put their pants back on just like us simple folk. They screw up, just like us. They jack off, too. Were all of the same stuff, no one better than another, known or unknown. His victims created another victim in a way, because an accuser’s word in the spectacle of public unconsciousness, wields a broad sword attacking a guilty until proven innocent person, like the popular opinion’s power of influence. Influence that provokes anger and raises the temperature of the our citizenry, sparked and already burning up by the fires of philosophical division.

We must now look for a target somewhere or we might just explode a load of our own sputum all over ourselves, rather than a depressive comedian’s T-shirt. How did the case rest without a conviction and with the sacrificial ram leaving the stage with more guilt and shame than what drove him to propose the naughty-ish script? Would anyone venture to guess or to even take his side of the court of majority rules opinion?

Please be my guest and comment below, as it occurs to me I should at least ask you, the unseen others, if I’m going to continue write such self-pleasuring masturbatory blog posts, what you really think. I think too many people are not going to say what we’ve all thought (admit it) – they could have just gotten up and left the situation. It’s not their fault by any stretch of the imagination, but they were not held down, nor were they his hostage. There I said it and I am a woman, too. Y’all thought it but you didn’t say it. I suppose we can now return to the spectacle that is our current POTUS already in progress. Lord, please help us all.

(And, by God, why can’t we all have a Nielsen presidential ratings “impeach” button on our $200 75” plasma TV sets’ remote controllers?)

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.

Dear Newly Diagnosed Breast Cancer Patient

My friend, hold onto my hand. I have you firmly in my heart and in my thoughts. Thank you for reading. Thank you for reminding me why I keep up this blog. Yet I’m one of many who choose to write for therapeutic reasons and to share my feelings so people who look for help can find it in the form of shared experiences. There’s a group of strong women out here who will make a strong network in which we can support you and hold you. Once the feeling of confusing despair dissipates a little, everything will fall into some random combination of slow, blurry, painful, lonely, disturbing, isolating, uncomfortable, weird, surreal, and a host of emotions no one but you and this club you joined can understand – a club we joined unwittingly to which none of us wanted to belong.

Stage III certainly is a mouthful to say, let alone think about all weekend. Call them if they don’t call you. Be the best self patient advocate you can. There’s no one closer to you than yourself. Keep a pen and notebook with you at all times – next to your phone, your bed, in the car, in your purse. Take notes, write down questions that come up. But try hard not to get too deep in the web of info on the internet. You’ll have a hard time getting rest. No two people have exactly the same cancer as the next. Genetic, environmental, and other causes, but god the one things that didn’t cause it was you. You’ve not done anything to bring this on…

As for the first few months you’ll feel like no one is taking your situation seriously and you’ll push for immediate action although it’s very unlikely anything much will change – either in the progression of your cancer or with the medical treatment you’re receiving. You have a nurse navigator and use the NN to help you as much as he or she are able – questions, answers, appointments, notes from doctors appointments, find out what they can do for you and take full advantage. Monday isn’t too far away, but by then I’m sure you’ll have gone on the internet to see what the dependencies and prognosis look like. If you can at all help trying to dig until you hear from up your oncologist.

A small but very awkward discussion is a second opinion – after your oncologist goes over your pathology with you and initiates a line of treatment protocol, get a second opinion, as I wish I had done earlier in my journey. I did eventually and I’ve changed oncologists twice – I like my team at Stanford a lot and they’ve gotten me through the hardest health challenges.

I know it feels like the world collapsed and there you are standing in the midst of the apocalypse that’s destroyed everything in your past and future and nothing is known, you don’t know who’ll respond of your family if friends, and you cannot understand why yesterday was okay and today is really the farthest thing from okay you can even imagine. Helpless, unwell, sad, frustrated, alone, angry, distressed, full of doubt, overwhelmed by fear, uneducated…

It took almost six weeks from my initial hospitalization and diagnosis as stage IV metastatic breast cancer, HR+ (hormone receptor positive where the cancer feeds on my hormones; more estrogen than progesterone). I will let you read elsewhere if and when you want to in the blog about my initial diagnosis and subsequent treatments, although I bet they want to start you in some form of chemotherapeutic medication while you go through tests, CT scans, PET scans, genetic profiling, and…

It’s going to feel like too much to take in at once, and it is. Get a pen and a sturdy notebook out ASAP. I’m here for you and I can give you as much or as little of my personal experience to guide you. Listen to some podcasts to keep your mind occupied and stay in the know – personal ones like Thanks Cancer – there’s a link on my site – a podcast that two friends wish they’d had when they were going through each of their separate cancer journey. The stuff that’s about to come up in your life will make it seem like a dream. There’s Karin Seiger’s blog and podcasts. She’s an excellent resource of both calm and strength and is a licensed therapist with two breast cancer diagnoses of her own so she knows what it truly feels like, just as Mimi and Leanna the two aforementioned cancer friends.

But you’ll be okay no matter what the outcome. You will find a way to peace with your diagnosis eventually, could be sooner or later but you will. You’ll find parts of yourself you never knew existed, and you’ll grow emotionally, spiritually, and intellectually to heights you never thought you could. And no path is wrong, no steps incorrect because it’s your path and your feet and no one can walk in your shoes. Some women immerse themselves in family, kids, etc., some in exercise and nutrition, some in writing and reading, some in meditative practices, eastern medicine, yoga, Qigong, peer groups at a local cancer center, and a you’ll find your balance using a combination of some, everything, or none at all. Invariably however, you’ll be met with open arms wherever you go.

I read my husband your note with tears and said to him – this is the reason I keep my blog going. I need to focus on writing to her what I wish someone had written to me after my diagnosis. So this is the best that worked for my journey so far. And without going down too many confusing roads, I hope to have given you an asynchronous hug from here in California to your time zone – and I will not let you go it alone if I can help you at all, I will. Stay in touch, even if it’s just a once in a while single sentence because more pressure you don’t need. But, let me know how you are doing. Ask me about things you need a simple pointer towards and if I have answers I will give them, experience I will share it openly, referrals if I know one, and love unconditionally.

I’m not the only one out here. We all love each other in a sister and brotherhood of strength and support. Use Twitter and Facebook. Feel free to check my follows and followers on Twitter especially and there are two online groups – whatsnext.org and inspire.org – I have a listing of some links I’ve used in the blog, too.

Sorry for the delayed response; having not had a good health week culminating in todays fun stage 4 spectacular. And finally, keep your humor because it’ll keep you going in those very dark moments. You’ll have some now and then but laughter’s a medicine that no oncologist prescribes and you can get it over the counter for free. With cancer neither of those adjectives pervade the situation unless you seek them out and find them yourself. But there’s sunshine after the tears subside and remember that even though daylight hides the stars, the starlight is just on this side of night ready to shine even if you have to imagine they’re there.

❤️❤️❤️❤️❤️❤️❤️

Ilene

This was a letter to a reader of my blog, who’s also a virtual friend, in response to her personal email to me. I wish someone had written this letter to me when I was diagnosed in 2015. I felt alone, afraid, and as though things were happening in a time warp. I’d love to have your comments on what you’d add to the letter or what you’d like to have heard when you were first diagnosed.