A Confessional: dedicated to beloved friends and readership

I’m living with my cancer and without fear of death. When I die, I close of the book of life I’ve written from my birth until that last, peaceful exhale. Beginning immediately facing each new day with gratitude not despair, love not fear, finding comfort in the changes that occur naturally and without effort each day in the certainty of growing even a minute older and slightly wiser.

If someone complains about their age or the effects of age in their outward appearance I have to laugh at the folly of vanity while coming to the aging process from a position of hope. I hope to live to see my gradually aging face or look down at my time weathered hands and that my days are full of garden dirt and callouses from toiling with artistic endeavors and of writing. Each of these efforts yields a better experience with each moment of practice.

What if the following statement were absolutely true: Practicing life prepares us for a beautiful death.

Longing for the great gift of aging.
We move into consciousness from sleep each day – a sleep from which we, eventually, will no longer awaken. I’ve breathed gently in the last soft breath of my best friend Allan who died (too young!) at 37 years of age from AIDS related illness, and that of my father who died at 71 years of age from complications of a huge but benign mitochondrial brain tumor. I am grateful to have had the blessed offering to bear witness of death at their sides.

Breathing someone’s final exhale of air is a taste few of us get the opportunity to intake. This very act has had such a profound impact in my life, that it’s now upon meditation and deep reflection, completely changed my perspective of death. So much so that the sadness of loss in living life without them honestly feels selfish to me now. Neither of them are in physical pain and they’re with my consciousness here as long as I am.

Curiously I await to solve the mystery of where our consciousness goes after the body separates from the energy it produced to make thoughts, memories, laughter, truths, inventions, experiences, experiments and most importantly LOVE. While the transition of consciousness certainly keeps me expectant of this single universal truth and everyone’s final gift from a life lived, it’s so intriguing to me as to what happens during that process.

In NO way am I in a huge hurry to find out. And I have no “bucket list.” I’m not going to kick the bucket over to see what’s inside. Nor do I have but two regrets. I’m keeping those for myself for now, but nothing personal.

Awakening wide awake.
While dreading it in the past I now love having insomnia because it gives me extra quiet solitude and time to read, write, think, meditate. Yet at first I resented my inability to sleep about one night a week – sometimes more or less. Insomnia depends upon what my body struggles to heal from and my mind refuses to put a bookmark in my life for the day and close down for the night.

Finally it dawned on me – no pun intended – that rather than fight to find sleep that never falls I should embrace the extra gift of time. There is so much our bodies try to tell us that we reject for various reasons. But maybe metastatic cancer comes with an after hours club invitation that we should gladly RSVP to join rather than fight or decline.

Yet the deepening loneliness and isolation do not feel especially worthy of the “gift” title. And these emotional rips in my seams aren’t worth a moment of extra time from cancer happens to have as a special kick in the head.

The four year process that changed my husband into someone whom I no longer know and whom would rather sit and ruminate than get well and rejoice with me in the daylight has me very angry right now. Did I overstay to the point of no exit due to the intolerable amount of stress a breakup and move alone would cause me? That delectable detectable Cortisol flavor that cancer finds especially yummy would emit from the stress body and might literally kill me. The consolation of quenching my curiosity about the death process would be checked off my “need to find” short list, but not at the loss of and the deep desire for some loving time with him. And by that I mean whomever he becomes when he picks up his head after too long of his beautiful mind gone into the darkness of despair I cannot cure with or for him.

Of course resentment lingers in the air like smog over Los Angeles in the 70s. And I question my own judgement of trading fierce love and loyalty for self preservation.

Regrettable or not?
How do I not cover my eyes while I ride shotgun as he’s driving us both underground in and out of the dark tunnels of depression? Depression removes a person’s individuality as they move from one conscious state of being to another. Yet how to find his cruel remarks and his lack of empathy and care during those darker times as a way to see myself differently and stand back and remember that it’s just my thoughts making me unhappy hasn’t come to me…yet.

I find it really difficult to separate the depression from the person – is it the depression or is it really him saying that or, very frustratingly, not saying anything? Is it me he’s angry with or my disease? How can he look at me writhing in bed all weekend and not move to ease my suffering? I cannot find another way to understand but this:

Our conscious selves equal our thoughts and our thoughts are only illusory. However, rip the ribbons and paper from the present and by the time you think you’ve understood something fully, it’s already in the past. I meditate in the here and now, in this moment. I meditate to receive the world I’m in without judgement or labels or any expectations. I believe any person will do what they will regardless of what we choose to believe they think or feel, and I cannot know what anyone else feels but myself about a situation means.

Or, in other words – if life’s difficulties are only our thoughts and my thoughts aren’t “me,” but very much a construction of my consciousness – then why does it hurt so deeply to my core!?! Riddle me that, Joker!

One singular sensation!
Please make no mistake, I believe in a singular One-ness, connecting all things that ever were to all things in forevermore. Perhaps not inclusive of an organized religion’s version of God for me to adhere to, and for which I do not begrudge anyone’s spirituality. (I do take issue with those who feel the need to commit acts of violence in the name of their god(s).)

I believe in the One representing all beginnings and every ending together at once, the circle of what is and is not, energy and harmony, light and dark, opposites and parities. And you can hear my voice raise up with the joy of this “knowing.” Perhaps it is towards this abstraction, where our spirits or souls disappear, when our physical bodies give way and depart from the earth and the understandable, tangible universe. Back to the singular One, the infinite, to everything and in nothing. Mind blown in the windless universe.

I think my most authentic sense of self is found in the fundamental truth that all things, every molecule making up every thought and every step that leads us to the next place in the dimension we choose even by releasing a sneeze or not eating that apple, comes from the same “stuff” as dreams and stars are made of…and with that I can rest my mind free of guilt, shame, pain, and suffering. If it were only so easy to do as to say I can do this. And I’m in no way close to perfect and may find someday that I’m very, very wrong! Straight to hell with me and my heresy!

But I start each day hoping for more and in closing I end there.

Ilene

Female. East coast transplant living in the Bay Area of California. Living with Stage IV breast cancer. Married to the coolest guy in the universe who occasionally suffers from serious depression. Love my stepsons, although I never thought I'd have that thankless job - ever! And my best friend Simon is also my cat. How I have survived with stage IV: treatments including chemo and surgery; palliative oncology; tenacity; a dark sense of humor; support groups; and my newly reinvented career as a vintage and antiques maven. Some days I miss the old me who led a well respected and well paid life as a business strategist in high tech. So much for that. I blog to simply share my experiences and my poetic approach with others who have cancer of any kind or with their care givers and those who love them. If one person at the very least finds a little commonality or a friend out in the ether tor a smile, a common nod about this experience, or even a link to assistance, then I have accomplished a small but extraordinarily meaningful goal. Go team.

13 thoughts on “A Confessional: dedicated to beloved friends and readership

  1. I love the Viktor Frankl quote, and I love your approach to life and death, Ilene – they are very similar to my own beliefs. I also look forward to seeing “my gradually aging face” and looking down “at my time weathered hands” – although I might already have a head start! And above all, I look forward to continuing with my own artistic endeavours and writing – as you do.

    1. My friend got depressed over getting older – she looks fabulous by the way – and I told her I wanted that problem but I’d not feel badly about it and I never have, even before my stage four diagnosis. She said I had a great attitude…I’ve profoundly changed in the past 3.5 years and probably have done more maturing in that time than my entire life. But would I trade my wisdom for my health? Yes! Thank you for sharing your appreciation and I look forward to reading your writing with my forever needing stronger glasses eyes!
      💜

  2. I really hope these words can convey to you just how important your writing is, particularly to those with a similar diagnosis/ prognosis. As I struggle with where my life is now with this disease, your words often just help me verbalise what is often a jumbled mess in my head as I struggle with my emotions.
    Today’s post was particularly thought provoking, I also suffer with insomnia and like you I no longer fight this event, and I do try to use it for reflection and learning and some meditation.
    I really feel for you that your partner, through his depression is unable to give you the nurturing you deserve. I have a loving partner but his loving does not extend to me being able to really share how I am feeling so again I can empathise with your isolation and loneliness.
    I am a nurse and as such I have been privileged to be alongside my mum, my sister and brother-in-law as they have taken their last breath, it is a privilege.
    Thank you sincerely for all your words and intellect and compassion, it really helps

    1. My ability to verbalize the unspeakable either frightens and overwhelms or resonates and soothes. It’s up to an individual whether or not they choose to read it or choose not to read it, but I am grateful for your feedback and your perspective on my partners emotional shutdown. It unfortunately began before my diagnosis. My feeling is that it’s easier to be in denial than go ahead and show strength and resolve. He’s a brilliant man who spent 18 years at apple inventing life altering consumer conscious patented applications. He holds nearly 40 patents on four inventions.

      He could use his mind and energies to make it easier for metastatic patients in some way or he can choose to be in a state of pain because he was wronged by a narcissist ex who has caused parental alienation for him and my two stepsons. These now young men see him as awkward to be around him, so of course they stay away.

      If he could use the available resources that he’s lucky enough to be able to afford then he’d be getting well and seeing progress coming out if his darkness and into the light. We are trying to move to a more conducive natural environment out of the suburban wasteland of San Jose. He’s in no position to make positive changes since depression causes an inability to make decisions. If he can’t even decide what flavor to feed our cat Simon each day, can you imagine him trying to sign paperwork on another home? We have all the wonderful possibility of the future ahead of us – the time, the resources, and the desire. But he’s got to get it back together soon or it will be too late.

      If it were a cure he’d look to solve it as the brilliant scientist he is, but he’s chosen to believe I have many years ahead of me. I hope he’s right!

      Thank you for writing and for reading and for your sharing of important concepts that I otherwise wouldn’t have a perspective to see.

      Feel good and I look forward to sharing more of my innermost feelings as openly as I can. I do believe with my heart and soul that this is what truly resonates with people – not sugarcoating what’s going on in my mind and body. Expressing what others maybe feeling or feeling some of…this continues to drive me to share my blessed gift of writing. It’s been my life’s work to write and communicate. Now with cancer it’s more important than ever.

      Much love,
      Ilene

  3. Ilene, I await for your sharing of your mystical experience. 🙂 Your post has helped me because right now, I have to be prepared for whatever. I’m further down the line now in my diagnosis. It’s HER-2 breast cancer cells; very aggressive; with high suspicion of the beginning of Stage III. Since Thursday of last week, the tumor has grown 2 additional inches. My back hurts. The lymph nodes under my arms sting and this morning, that stinging is running down to my elbows. I don’t know what it means and the doctor and nurse have not explained it. I’m scheduled for a PET Scan tomorrow and will meet with the oncology surgeon on Monday for the results.

    With that said, I want to address what you wrote regarding your husband. I don’t know him, but do have some experience with human nature, including my own. There are people who go into denial in different ways. Some people simply do not know what to say. They feel helpless because they have no cure. They ARE helpless because they have no cure. Even those people of faith feel helpless when their prayers for healing are not answered. However, they are not helpless in the sense of being there. “Being there” is in whatever way their personality was “there” before cancer visited their household, or loved ones, or friends.

    Too often, there are people who fear illness and death, and they distance themselves from their ill loved ones because of that fear. Still yet, there are people who do not know how to watch a love one die.

    When I was younger, (I am now a senior citizen), and my god-mom went to the hospital with breast cancer, I could not visit her in the hospital. I had no cures. My prayers for her healing were not answered. I did not want to see her decline into death. When she died, I felt guilty not being there for her. It was at her funeral when the ministers and family told me that my god-mom knew why I had not visited her in the hospital. She understood that it is difficult to watch those you love die. That lifted the guilt and also gave me the courage to never turn my back on those with terminal illness because of my own emotions.

    The living can learn.

    The best to you!

    1. We do what we can do…to have visited her at that time may have caused you too much distress to handle, and wiser minds understand it’s not for lack of love. It’s not for lack of desire, or even courage. Humans can only handle mortality of their loved ones if and when they are ready to face their own. Death isn’t frightening to me, and never has been, so I’m called by some unseen force to help those I love pass into the universe’s infinite singularity of all energy all time and all matter whether we can see it or not.

      I have a pet scan tomorrow and see my oncologist on Monday as well. It sounds to me like you’re going to spend time with chemo, surgery and radiation – the protocols of current oncology. They can fend off the cancer. But the best thing I can offer is this: it’s not being fake and acting positive even you feel down, it’s about tenacity and humor. Tenacity to find the resolve to handle the situation with grace and with strength and to smile through the pain. Years ago our diagnosis was a death sentence. Now it’s no longer a death sentence, but a hard road to some form of recovery.

      I’ve significantly changed since diagnosis. I look back at who I was versus who I am today and I’m grateful that I’ve found my spiritual wisdom to heal my soul – my inner wounds that cannot be picked up in a radiologists office. The one who heals me is me. The one who makes decisions to deal with the decisions for what I will and will not take is me. And that’s all within my power. I could focus on what I can do nothing about but then the cancer becomes me. I’m not my cancer – I just live with it reluctantly and do all I can to evict it from squatting in my body without a rental agreement! Time to call the sheriffs department to serve it some papers to get out again. After being NED – no evidence of disease for three months and to have it return to its room in my body isn’t a mystery, it’s stress allowing it to find food and shelter, so stress must be kept to a minimum.

      I send you strength this weekend as you go through your scanxiety until the oncologist reads your scans with you. If the nurse navigator and someone from your life can be there to help you take notes do that – it will be a blur at first…but make sure the oncologist goes through the visuals with you explaining everything that you’re seeing slide by slide, since information is going to only help you make your decisions – I’m a huge self advocate and I lead my team of experts. They listen to my wishes and I live with my body 24/7 not anyone else. Your gut will guide you, and if it feels wrong it probably is wrong.

      Do you have Susan Loves breast book? If not I have an extra copy I can mail you tomorrow and would gladly give you. Let me know.

      Much love and I’ll be in the pet scan right along with you!
      Love,
      Ilene

      1. Ilene, thanks for your kindness, your strength, your life! I relate to what you say about squatting. It’s what I felt the other night and I spoke it to the cancer cells; “How dare you move in, you parasite! You have no right to my body.”

        I had hoped to write more, (I did read your entire comment) but just looked at the clock. My PET scan is very early.

        Love, Xena

        1. You have no idea how much your words truly mean to me – and in that feeling and in the moment when I find out that my no bullshit, medium rare, brain drippings can make someone feel a little better, less alone on the planet, more loved by someone who just cares…then instead of the continual downer that the additive effect that days to weeks to months to years can have in an inertial sadness snowball that melts and flows like a trailing stream behind me, like Pigpen from the Peanuts cartoon is followed by a cloud of dirt, then I feel like I am of use in this consciousness and not completely out of service to the world and not as useless as I can feel from time to time.

          Please accept my gratitude and my delight in hearing from you and for your very sweet compliments. And I do not feel deserved of accolades or atta-girls – but I am beginning to take to mean maybe I’m not just an amateurish, cancer riddled, girl who is looking for her tribe on the infinite information toll road.

          Yes the entire first paragraph of this reply is one sentence meant to be read without a breath or a pause of any kind. I do get that happy to know I helped just a little. Let’s hope Monday brings us both a little better news from our PET scans Friday. I’m running in place on nervous energy, house cleaning (I can CONTROL my house’s cleanliness) and bad movie watching. And reading my blog comments while hoping to translate my stream of unconscious writing that gave me innumerable insights and relief. One thing I can tell you I realized I’d like to share is this:

          Stripped bare of all you are not,
          You’ll find out who you really are.

          Quote me on that. It’s simple to say but so hard to do. Since we spend our lives constructing an image of ourselves we present to the world, we wind up objectified in the mirror. Thus if we find out we have a critical or terminal illness we are left to reacquaint with nothing but the raw, unmasked beauty -an uncovered consciousness as real and as vulnerable as anything there ever was.

          💜💜💜
          Ilene

  4. Beautifully written as usual. I happened to witness my dad taking his last breath 10 minutes after my mother found it necessary to go feed their dog and come back. He died while she was gone….but I got to witness it with him. No one else. It was a gift I’ll cherish. I talked with him the whole way through. I hope to be so lucky.
    I’m so sorry you’re not with someone who supports what you’re going through and you have to deal with cancer AND depression….it makes me sad for you but I love reading your posts….some more than others. I couldn’t do the podcast on the dying woman….Take care…..

    1. To my hearts delight I find creative endeavors come standard with retractable support and it’s beautiful to read. My warmest appreciation to you for continuing to follow and really consider my words not just click a “like” star and be off to lighter things. (Your no slouching daisy when your pen meets your paper, sir.) I’m not sad anymore about depression. Cancer isn’t the best way to spend my time but if not for an invisible push to keep talking there’d be no reasonable way to justify stupid ass cancer in my body killing me softly with someone else’s off key song.

      Eh. Whatcha gonna do? I’m fine except for this pesky disease that keeps popping up like a whack a mole all over my body.
      We write!

    2. You’re so fortunate as was your father. You are strong and wise and beautiful for doing so. I’m here for myself, and I have good friends who I trust and love and they provide some of the support I need. But nothing takes the place of warm arms to hold me at night or my hand in a moments notice. Only he can do that for me. I miss the man I knew four years ago, and perhaps being his caregiver has taken my focus off of my cancer and that may be a gift I cannot discount. I cannot leave a loved one who needs me, and he does he does.

      Love and strength,
      Ilene

  5. As you go through your days of living to die, you continue to grow and learn. The rollercoaster you are trapped on that unrelentingly throws you about, that leaves you weak, tired and fed up isn’t a ride one would stand in line for -yet it is yours to endure everyday. Everyday I say this- #fuckcancer.

    1. Lovely woman – there’s a moment when a roller coaster let’s gravity and inertia take over at the apex of the climb of your car on that chain… but there’s a moment when just prior to the forces of nature take over that the self imposed fear factor rushes through us like a fire in a tinder box set by a Molotov cocktail. Exhilarating and wild rides – E ticket rides! Wooden Coney Island coaster creaking bone benders. I love them and no longer can ride them though my height hasn’t been a gating factor since 1971. My bones cannot handle them. I think I’d like my ashes strewn across Las Vegas from the tippy top of the roller coaster st NYNY hotel. Now #fuckcancer for sure!!!

      I had a mystical experience tonight that I’ll share as soon as I stop smiling like a Cheshire Cat. Thank you for showing your love and I appreciate your well considered inputs very much. Please keep writing. I love your blog, too. 😘

Tell me what you think.

This site uses Akismet to reduce spam. Learn how your comment data is processed.