Tag: bone metastesis

One Fresh Hell, Hold the Tomatoes

Last week found me a visitor to a mental health facility, leaving each evening alone and downcast. The place just a few miles from our home, in the foothills south of the city, in an unremarkable single story building where I chose to allow supposed professional responsible human beings to rescue my ailing partner from the shackles of long term anxiety and depression. Leaving without him broke my heart and provided not a whit of relief as a few close friends hoped a “break” in the action might provide. His pained eyes looking upon my sadness as yet another judgement to come down upon me. Another multi-year term added to the #lifer tag around my neck, another blow to my remnants of hope.

All the while I possess the knowledge that I likely won’t live to see our future through to a plausibly happy conclusion. Even though this love 10 years in the making, its melodramatic script changed and the film itself in the can, spliced together and the story arc mangled under the cruel editor’s blade. The final reels go to the studio with my scenes cut and lying on the editing room floor.

I hoped for relief at the end of a long week spent alone over the course of treatment, yet no sparkle reappears in his eyes yet and his life not yet resuscitated. It takes the Zoloft about four weeks to help much. But I’m mostly alone these days. Yearning for my partner’s support and the kind of tender and caring love many of which many metastatic sisters write and blog about, I now look over at him, home in bed, and find one whose dark, inky emotions remain locked away inside his heart, like the stars behind clouds in a dark night sky. He lays there disengaged, thinking to himself about things that cause long bouts of sighing, and the simmering anger of so many men who find themselves bitten by such disorders.

Sometimes, my difficulty lies in hiding my visible outrage for being his care giver for over three years, of which this past 18 months one of the most heart wrenching trials of my life. My god – this and cancer, too? Fuck. What more can one do but look up and ask the ceiling over our bed long and winding questions about the treacherous nature of spiritual meaning, self-worth, and the relative value of a life. I then break from the sum of my existential questioning of cogito ergo… to find an email in my inbox from someone who reaches out to me to thank me. Grateful for my honest approach to my blog posts they type out a note that reminds me of why it’s worth it to know that it’s my responsibility as a wife to make a decision to help alleviate my partner’s suffering and try to revive him. To ask that his soul be returned his body.

He, too, wants only the same for me and indicates we may not stay together. For fuck’s sake — why now and you have got to be joking (the only sentences I can form without punching him in the face.) These trivialities came to him exactly how? And in what universe does he believe he lives in where this would even be okay by a substandard unintelligent alien culture of unfeeling assholes? And with that he passes wind and falls asleep and I’m left to wonder alone, naturally, what fresh hell might await me tomorrow?

Hopefully a new sandwich called “fresh hell” from the deli and no more than that.

There’s No Tooth Fairy at 52

My chemo – probably the Xgeva – made me throw a cap off of my right canine tooth today.  My tooth, ground to a nub by my dentist in Miami 15 years ago, now sits between an incisor and the tooth that kicked all this dentistry off so many years ago. I would cover my mouth because the discoloration that no amount of bonding would cover showed through. Prior to the magnificent new smile my dentist gave my face, I lived to go to the Movies.  It was in those dark, cool cinemas, I could laugh loud and proud. And I love to laugh and to tell jokes, and to lift the corners of a friend’s sad eyes with a bad pun or off color made up limerick. Or produce eye rolls with my on the fly songs about my cat or a situation with my cancer. 

I ran my tongue over my teeth and thought from the texture that the blueberry scone had deposited a blueberry skin onto my tooth. Upstairs, I grabbed my toothbrush and put some sensitive mouth toothpaste on my brush. And looked painfully into the mirror. I am glad my husband wasn’t home because I wailed hard. NO NO NO NOT THIS TOO – FUCKING CANCER TAKES EVERYTHING EVEN MY SMILE. I cried for about an hour. Maybe I needed a good cry. There’s too much going on right now to take time to cry. I feel these days I need to get things in order at home. I don’t feel well. I know my disease is “stable” and I know I am having a really hard time getting an appointment with my oncologist and palliative oncologist, but it’s not personal.  A dentist can fix my lost cap sooner than later. I hope. Craig offered to cover it for me since I cannot even afford to eat in Northern California on my own. I can smile for the little things and cry for the big ones. 

Today he and I we were talking about being tall and how people expect tall kids to be tough. My 16 year old stepson is almost 6′ 5″ – I was 6′ at his age. People also expect you to reflect a maturity beyond your years when you’re a tall kid. Its our burden and the curse of the tall. I said I always felt like an awkward Amazon and Craig said, “you are a beautiful warrior – as the Amazonian women were. You even have your right breast smaller from a surgery like they did to shoot their archery equipment more accurately. And you’re hitting the cancer head on withtough grace like you do everything.” I beamed at him and blushed at his comment. I wished it was after the tooth loss since we had a few stupid fights after the touching comments of the morning. Maybe I need more than he can give. I’m afraid he’s feeling safety in his depression so he doesn’t have to deal with some tough things going on in his world.  It’s so aggravating to be so all alone with my cancer and pools of festering lies we uncovered recently for the personal gain of an 18 year old.

But better days come. They have to. Right? But there won’t be a tooth fairy flitting around the bedroom waiting until I fall asleep to put a crisp 5 spot under my pillow. I don’t know where the cap tooth is and I probably swallowed it anyway. I cannot handle cancer sometimes. I just wanted to at least keep a decent looking corpse for the dying young crowd to cry over, but that’s not going to be the case if this keeps up.

Cancer Trends Progress Report

https://progressreport.cancer.gov/

How I learned to stop arguing and love this pain

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. 

People like me

“People like you…”
The nurse practitioner blew her raw red nose into a white, rough hospital-grade tissue. Clearly battling a bad flu, her mouth exposed over the face mask she’d moved beneath her chin, moved for her comfort. Defending a position sitting on a stool with both legs and arms crossed, she spoke at me while spewing her germs throughout the infusion center. The chemotherapy infusion center, where people’s ability to combat anything more than the cancers each one of us came to cure becomes akin to a kitten at a dogfight.

People like us all prayed to our gods that we’d find a cure here. Some of us, people like me, could only hope to stave off death a little longer through enduring therapies that might also kill us.

People like me.
Out of the pursed mouth of nurse Typhoid Mary, came words I’d only heard once before, generally mumbled at people like me by men in mullet hair cuts, smelling of cigarettes and motor oil. Of course in the southern state where I’d lived the largest percentage of my life, a constant tug of war between cruel epithets and self deprecating jokes were cracked in reference to my religion – Jewish. Now my long heritage would turn on me again, because people like me, ashkenazic Jewish women are genetically predisposed to breast cancer. The eight tribes long ago set out to populate the earth with too few in the gene pool to wash us clean of this hideous mutation.
Back again my mind wandering at the dull drone of our nurse practitioner- tuning her in as if a UHF channel on my little black and white TV in my bedroom staying up too late watching Godzilla vs. Mechagodzilla. I looked at her as she said, “we don’t operate on people like you.” Blink. Blink.
People like me? People married to a guy named Craig? 51 year old women? Jewish women? People who’ve traveled the world? Who know how to bead jewelry? Whose parents both died in the past three years? Who earned honors degrees in English? Who could talk by the time they were six months old? Who grew up in New York City? Who lived on Miami Beach? Who loved singing? Who swam and were lifeguards? Who have two stepsons but none of their own children? Who love deeply and give compassionately? Who cannot believe they cannot hold a full time job ever again? Who never imagined that a palliative oncologist would become the most important person next to their spouse? To whom do you refer?
“People with metastatic breast cancer, that’s who.”
“Oh, you think so? Well, you’re wrong. And let me tell you first to please put your face mask on properly so you don’t pass us your awful germs and secondly don’t dare come to work sick ever again. Next, understand that all patients are different, with different constitutions, different kinds of cancers and some of us were even diagnosed at stage IV. And not because we are negligent in getting our mammogram, but because we have such dense breast tissue. And if you’re not a doctor how dare you tell me what you believe my therapy should or should not contain in its proscriptive recipe. You have no right to be here sick or nor the credentials to know what will make me better. I know there’s no cure for me, but I dare say people like you keep people like me from getting the benefit of life and a larger slice of the cancer research pie. So get out of here and you will never speak with me again, because people like me do not need the pessimism of people like you.”
I looked into her now tearful eyes and found no pity in my heart. I found only my fierceness and my tenacity – the qualities of spirit that keep me going even through the bleakest times of my life – and as she silently stood to leave I apologized for upsetting her. But people like me don’t have the time we used to waste on ignorance and behavior that required our patience. My words, blunt, yet sharp like a surgeons scalpel, had filleted out a piece of that thoughtless, careless person who knew nothing about me or anyone even like me.
So people like me, with hormone receptor positive, metastatic breast cancer and some bone lesions to prove it, can get lumpectomies to improve their mortality. We can do things that defy the odds. And we will do everything we can to cling to this light we call life for as long as it will have us. Our beautiful, full and rich lives to which we seek only live and compassion from those around us and we rage at those who speak from a platform of ignorant generalizations.

I am the only me that has or ever will be.
Don’t forget me.