The past 10 days brought what would have been the 76th birthdays of both of my deceased parents and the first year since my mother’s death. My husband started his therapy back up but he’s not keeping with his doctors orders. My stepson who is 18 is on the precipice of failing high school and I came to find out he’s been fueling fights between my husband and I while I’m not around. He also has an upper respiratory flu and I’m recovering from a stomach virus. Yuck. Stop. Enough!
And, guess what?
Today SUCKS. Yeah! I’m alive. But let us just cut through the bullshit here – I am not feeling well. I’m tired of having to deal with the pain and just sitting here constipated from pain reducing opiates and my mind wandering into a place I try not to let it travel. That is, how much devastation my metastatic cancer causes to my bones every day. My second off limits discussion that I really cannot remain quiet about: desperate pleas to my husband regarding treatment options for depression – a depression that’s wrapped a cloak of negativity around our house for two years. The third and last off-limits topic revolves around an 18-year old stepson and his unrepentant lying and visible disrespect. Today’s winning bingo card: the irritability and unkind words that blowback in my direction from my darling’s depression. I’m drowning in a persistent rain and the hard downpours of Northern California, after a long and devastating drought, reflect my mood today as well as the sharp ups and downs my life seems to take over and over again. It’s either “sadness or euphoria,” to borrow a line from Billy Joel.
Pains and aches take my body and soul through those same sharp ups and downs from having terminal cancer. The metastasis to my bones turns me into a sleepless contortionist each night and the lasting effects of the Xeloda on my nerves gives me neuropathic pain I can only describe as hot pokers and nails rather than pins and needles. From my doctors and my own investigation of metastasis to the bones, I’ll always have a few lesions present, however, depending upon where the initial leisons were found and how much damage they’ve done, there can be a reduction in the number and/or size. Also, radiation therapy in certain areas reduces pain associated with bone mets. Frankly, I don’t believe that it’s a very good strategy to use a treatment proven to cause cancer against cancer. All kinds of cancer. I am fighting a war but I do not think it’s time to type in the code and push the button to release the nukes just yet. Tantamount to singly assured destruction.
Further, as is always the case with forced menopause in ER/PR + and post menopausal MBC patients, a bone “shoreing” therapy is given to the patient. The chemo and hormone therapies can kill the lesions but the bone damage is done, so it’s really important to pay attention to pain, even if it comes and goes because it’s a sign of weakness in structure – especially legs and hips because we put so much weight on those poor things holding our bodies above ground. Standing up from a crouched position makes me look like a 90 year old at the grocery store. People get impatient with me sometimes and I want to yell at them, but I take a calming breath and remind myself they have their own pain that I do not understand, just as they should never have to know mine.
Ingestion of vitamin D once per week and eating lots of high calcium foods like yogurt, supposedly help along with sunshine, of which ironically I can’t take too much. I haven’t gained any weight so I treat myself to ice cream when I want it. Bone mets are not the end of the road by any means but again I’m no doctor and it depends on where they were found and how far advanced the cancer. While over time bony lesions with treatment and luck can mostly go away, but they do damage while they’re laying around like the boneless chickens in The Far Side cartoons boneless chicken ranch. The osseous sticks that keep me strong and upright, are left like bomb trashed countries after a war. There isn’t a Marshall plan for clean up and repair since stage 4 people will just die anyway. The plan, if you’ve got to hang a poster on the wall, is to keep us out of pain as much as possible.
My constant research and reading on topic make me a pain in the ass patient to some doctors, but my questions have resulted many times in a change or an additional possibility. My palliative oncologist once said something interesting to me – that she hadn’t ever worked with another patient who not only knew about the disease and asked questions, but stayed ahead and apprised of new breakthroughs and oncological opinions and options.
Now if I could just stop having to spend time making others feel better about my illness, feel less isolated and less in pain I’d be getting somewhere. But today isn’t the day. And unlikely tomorrow will be either. It’s my hope that my husband gets it together soon so I can stop thinking about how I would feel living alone. It wouldn’t be better although some days it does feel like it’s what I should do. The pain isn’t going away in my heart. But it’s not time to release the nukes on a nine year relationship, either.
I recall the end of Dr. Strangelove when Slim Pickens rides that nuke as if he’s straddling a wild bronco, cowboy hat in hand, yelling, “Woo Hoo!” as the missile gains speed towards the earth. The ants below have no idea they’re in the direct path of a mistake gone terribly awry.
Am I on the nuke? Or am I blindly walking to the pharmacy on the ground below, unaware of what’s about to hit me? Only the present moments go by, as time stretches out of my reach again. As a little child I remember asking the adults around me, “where does nothing start and something end?” I meant what’s out of our knowable understanding and beyond the beginning and end of time. My mom contorted her face at my incessant questions. Instead of answers, I received an apple and a boot to go outside and play.
I believe, now anyway, I should finally take her advice.