Bone Deep: the painful reality of metastatic cancer

Imagine an unreachable itch. The unscratchable kind. Yet it’s only an itch. Imagine bone deep insurmountable, untouchable pain, like you’ve never felt in your life. Pain so constant there’s little relief but addictive medication, some forms of natural remedies, and whatever you find through trial and error, works for you individually.

Metastatic cancer pain exposes you for who you really are. It’s not for the weak, the faint-hearted, the complainer or the meek who are afraid to stand up for themselves. If your best qualities consist of empathy, neatness, downhill skiing, contact sports, or binge watching hours of television, this type of pain shan’t suit your lifestyle. Oh and if you work, metastatic cancer pain probably won’t help you get that promotion you’ve waited years to earn. In fact, you may even get fired for taking too much time off or for HR simply discovering your cancer diagnosis.

Oh, shit.

You don’t look sick. You dress up to walk to the mailbox if you must or to go grocery shopping at midnight to avoid germs and sneezing kids who can unwittingly give you pneumonia. Variably painful constapation with dangerously impacted intestines from time to time can send us to the hospital.

Constipation alone is responsible for 92,000 hospitalizations per year. ( So imagine sitting in a very uncomfortable hospital sleeping contraption (the word “bed” seems too generous for the intended result, sleep), getting a jarring, “is it okay if I check your vitals,” at 3 a.m., and a roommate with a privacy curtain separating you from her and the entire extended family. One small kind of weird bathroom with a toilet and a shower stall with the water pressure of summer sun shower and about the same humidity. Now, poop!

Sure thing. No privacy, exhaustion, constant nuisances like night nurses and Telemundo Spanish language television. Everything annoys you, more so than in real life and add to it incredible boredom and it’s not the recipe for bowel evacuation.

Homeward, unbound.

Monday comes and it’s 10:30 a.m. and still I cannot rise. Having overdone it on the weekend, I pay the price of lost time on Monday. The heights of generalized pain and the burning numbness of neuropathy in my arms and hands keep me from getting going.

I lay in bed reminiscing about the days of actually earning money for working. Benefits beyond a paycheck reveal themselves like the unborn babies I lost in my 30s. I hear morning laughter and I’m reminded of the camaraderie of my office mates asking, “how was your weekend?” There’s no one asking and no one to tell about my Saturday and Sunday. No one to sit and drink a bad cup of coffee with nor to whom I can complain about Monday morning Silicon Valley traffic.

I no longer sit in traffic but in my bed and try to meditate on what I am thankful for not what I no longer can do. It’s still painful to think about all that I miss.

Money, its a bitch.

The financial fallout of terminal cancer for the afflicted causes pain of another sort. Juggling hospital bills, finding copay assistance for my $18,000 per month chemotherapy, and finding a way to spread $2400 per month of social security over 30 days of medications, doctors visits causes all kinds of stress. What Dr. Susan Love calls cancer’s collateral damage.

This cost of care presents such a highly profitable market all along the supply chain that our losses turn up sadly on the positive revenue side of so many spread sheets. Even of those companies with seemingly altruistic founders, doing this for their mom, or sister, or wife, dream of the things they can buy with the dollars they’ll reap. At my expense. At your expense. And that includes the medical marijuana supply chain from the hippie dippy growers to the seedy dispensary owner. No offense to anyone but you’re in it for the money.

So with that I’ll leave you with a clip from the movie “The Jerk,” where Navin figures out how business really works. “It’s a profit deal!”

I’m sharing this clip not only to point out the absolute abandon with which the food chain of big testing machines and cancer pharmaceuticals gain heavy profits. It’s also very funny in some ridiculous business situations. During my career as a business consultant specializing in product and service development, I took a trip to Austin, Texas to visit with a customer.

We stood outside of their offices in the Texas humidity laughing at their audacious requests for deeper discounts and free services. The laughter came from the managing engineer who was one of my favorite people to work with. He recalled the aforementioned film clip and we cracked up in mutual knowing of the film. It was so apropos of the ridiculousness of the meeting we’d just left.

That person who brought laughter through difficult times has his own pain to handle at home. I’m pretty sure this difficult client was nothing compared to the difficulty he faces at home. So, here’s to you, Mr. Horgan, for checking in on me and reading my blog, even 15 years after my departure.

Indescribably, Unforgettably, Irreplaceable

There’s no pain like cancer pain like no pain I know.

7 thoughts on “Bone Deep: the painful reality of metastatic cancer

    1. Thank you – I appreciate you hanging in for the ride – it’s a pretty bumpy road but the more I can relate the smoother it gets. Especially when I receive comments like yours.

  1. Hi Ilene,
    The pain of metastatic disease can be brutal – and not just the physical pain, as you know all too well and wrote about so adeptly in this post. I appreciate how you write with raw candor about your reality. Even so, I’m sure you only brush the surface. Keep speaking your truths. They are so important for others to hear. x

    1. Pain like beauty is more than skin deep. The difference between the two is less than I’d imagined prior to cancer. Beauty takes lots of appointments – so does cancer. Beauty uses all sorts of carcinogenic chemicals to eradicate being ugly – so does cancer. Beauty can be excruciatingly painful- so can cancer. The end result of finding the best way to enhance oneself to look beautiful can end in disfigurement – so can cancer. The endless list in my head goes on for miles. My point, Nancy my dear virtual friend without whose support I’d echo in a wide Sargasso Sea of words, is tha the surface is all we can scratch here. The depth of the itch lies beyond what conventional means alleviates and we are left swimming in pills, yoga, and advice none of which will even touch the emotional break of a heart that knows it must stop beating from the ugly disease killing the body and taking another beautiful soul down with it. God. Cancer really sucks.

  2. As always, telling it like it is. I love your final (“show business”) quote, Ilene – it shows that, despite all you’ve been through and are going through, you still have a wicked sense of humour. I just wish things could be different for you.

    1. My dearest one, you read my post as intended. His four years and four months has passed like lightening amazes me every day with six hospital stays and more doctor appointments then I care to count. There’s so many things unstated here as you know. But this is the life of metastatic cancer and I suppose life is brutal but better than none at all. So I’m glad to still be able to write and express my life through this blog so others know they’re not alone. It’s a calling. And it keeps me sane through the support you give me – and others who also can commiserate. Thank you for your continued support it means more than you know.💜

    2. Thank you Julia, for your wishes for me – I too wish that it were different. Nothing like this is for a reason, nor do I want to be made stronger, nor do I believe that god gives me all I can handle. But it’s your support that keeps me in check and strengthens me when I’m down. I’m grateful for your words and for being in the company of women who write about their own experiences with cancer. The group of us support one another in ways I never could imagine.

I welcome your comments!

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