My Struggling Ugly Days with Metastatic Breast Cancer

Everyone says to me that I don’t look like I have cancer. But I do have cancer. And there are days when I feel like I have all the cancer in the world. Today because of some screwup, I had been out of my pain medication for close to 48 hours. I take opioids daily to function and to have pain relief from the red ants crawling around my ant farm bones, biting my insides where you can’t see me.

I also take opioids to relive my abdominal cramping and pain from a continual battle with ascitic fluid in my abdomen, which I’m having drained again Tuesday morning and was supposed to have labs for today at Good Samaritan hospital, but I couldn’t drive. I couldn’t get to my palliative oncologists appointment either. My plan was 1. appointment and 2. blood draw, 3. then home. However, I came to find myself locked in a week long pharmacy-doctors office-nurse-communication struggle to receive these certain classifications of medication. I hope you never have to know the pain and suffering of metastatic cancer and the withdrawals associated with 48 hours of being out of your opiate based medication.

My beautiful angel friend and neighbor of 10 years had to see me like this today. I had to interrupt her busy day for this errand to get my medication. And she’s a terrific single mom of a terrific kid who I’ve seen grow up into a fine, happy, helpful and wonderful adolescent after 10 years. But to me he’s still the infectious giggling little boy. Only due to her being an awesome mom.

Yet today I know I scared her. I gave her my wallet and called Walgreens and she was visibly nervous. This is an ugly troublesome facet of my disease and a side reserved for my private hell. I do not even let Craig see me this way. Simon, seen here giving his mommy mouth to snout resuscitation, and love and kisses and trying to wake me up to feed him which I must go do, is the only one who sees me like this.

But I’ve decided to share with you the ugly side of metastatic cancer. The painful side. So, based on my no bullshit blog policy, I’m sharing selfies so that next time perhaps you’ll refrain from wanting to say to anyone with metastatic cancer, “you don’t look like you have cancer.”

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 “My Struggling Ugly Days with Metastatic Breast Cancer

  1. Ilene, So sorry to hear of your suffering.

    October is the month dedicated to awareness for breast cancer. I want to encourage folks to always remember this fight is just not the month of October. This fight is daily and sometimes is over multiple years.

  2. How can that be? A patient in extreme pain for over two days because of a back-and-forth mix-up.
    “Beautiful angel friend”, the special words you chose for your kind neighbour who, I am certain, was mostly scared of not being able to help you fast enough to get your medication.
    As said above, this is a brave, honest and well-written post.

    1. Thank you…what a terrible two days – and all could have been avoided. The overworked nurse practitioner hadn’t done her job. The pharmacy hadn’t done its job, and no one thinks about a patient suffering an avoidable physical trauma when they go to sleep at night. Lisa, my friend and neighbor, texts me every day and just asks how I’m doing. That means a lot to me because she really wants to know. And her offer of doing anything in her power to help is real too. We get too many unsupported offers from people with no intent to help or give any support at all, and that’s if they stay in touch at all.

      Thank you for the compliment and I appreciate the time you took to share your thoughts.
      💜
      Ilene

  3. I hate hearing what you experienced. Kudos to your neighbor for helping you out. I really don’t understand people who depend on their senses to diagnose or determine how we are feeling or the disease that we have. “You don’t look like …” and “You don’t sound like …” are things I’ve heard recently.

    1. Can you believe a nurse just said this to me in hospital where I just had my pre periocentesis blood draw done? I said, well that’s why I was late, my personal assistant, makeup artist and style advisor were all late. Those inconsiderate assholes.
      I harrumphed and sat down and pouted.
      Then I laughed maniacally.
      Then said – oh my god! You thought I was serious?
      How impossible I thought to myself. And I’m the blonde.

  4. Falling under the heading of “This is NOT Pink” with all the cutesy shit out right now for breast cancer awareness. Yes we’re aware of the fucking monster now how do we kick back to whatever hell it came from? Your posts are what people want to ignore. Keep writing them sister for we hear you. I shipped out the book yesterday. You should get it by Monday or Tuesday.
    As always #FuckCancer

    1. Wow Samantha – thank you for your everything and your generous and kind heart. May we meet sometime in the near future and have a good long talk as we walk somewhere beautiful to get rid of some of the uglies.
      Love,
      Ilene
      Oh yeah, #fuckcancer

    2. I got the book and your card and I’m touched and I have a couple to send you too. The Brightest Hours and one other treat.
      Thank you my dear hearted friend.
      🥂

  5. Another brave, honest and well-written post, three of my favorite things about you (among others). Thank you for continuing to share your journey. Chastely discreet hugs from Dallas…

    1. Thank you my friend. You’re a thief amongst honors. Oops- he he – I mean your honor amongst thieves gives me safe haven where I find a network of string arms in which to jump off a platform with my eyes open and I always find you’re the first one to dust me off and say well done.
      Thanks for believing in me.

      Btw…have you begun recreating Bonnywood Christmas Village yet? I can’t wait to hear (and see) the further tale of the city that puts one to sleep, your mayoral manners, and the lunatic fringe who haunt me like memories of Christmas past!

      1. Interesting that you should mention the Christmas Village, as I was just contemplating earlier today how far I might go with this year’s extravaganza. To be honest, in the last few years I haven’t reached the heights of the Glory Days when the village took over half the house. (Life gets in the way, right?) But I’m feeling a bit spunky about the proceedings at the moment, so this year we might just go over the top, replete with new sordid tales about the naughty denizens who inhabit a burgh where all is not what it seems to be….

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