Breathing Life Into My Blog

It has been a few months since I have written a post. I had been keeping my blog separate from my fiction and nonfiction writing, thinking that they were two different animals, when in reality, they can coexist. So, look forward to more musings from me—some about my ongoing (yet sporadic) cancer-related treatments—and some that are more writerly focused, such as this post.

My fellow writer and friend, Christi Craig is new publisher at Hidden Timber Books. She too, is breathing new life into her venture by hosting author workshops such as the one I took this afternoon about author websites. The thing that I don’t think many people (myself included) realize about creatives is that a lot of hard work goes into the business end of being a creative. The days of squirreling away in an attic to write or paint or sculpt are long gone—if they ever existed. Can you imagine what Emily Dickinson would have done with a website? Maybe she would have been celebrated while she was alive. How about Gertrude Stein? Would she have been a prolific blogger? Would Picasso have nailed his Instagram account and racked up more followers than National Geographic? Would Hemingway have told Facebook to F itself? And which platform would Van Gogh have used for his website?

Christi invited Anne Clermont of Bookish Media to lead a workshop about author websites in 90 fast information-packed minutes. I had to take a two-hour nap to allow it to seep in; I was drunk on knowledge. My main takeaway is that I’m going to get over my FOFU (not to be confused with FOMO) and build a terrific author website. When I figure that out, I’ll also print some business cards. Not freebies. Not that there’s anything wrong with taking advantage of free offers, but if I want to be taken seriously, I need to put on my big girl pants.

I bought a domain name a year or so ago, but I need to change it. A metal artist in Texas has already claimed kathleenquigley.com. She doesn’t update her site often, so I doubt she’s very active. In the domain name I bought, I included my middle initial, but that probably won’t proved helpful for readers or people looking for information about me or my writing, so Anne recommended that I add writer or writes after my name in order to set my website apart from the artist’s. I suppose it’s better than being confused with Kathleen Quigley, the singing nun—a website I had found in the early days of the internet. I’m definitely not a nun, nor can I sing. I thought I had a unique name until I discovered my father had given his second daughter my name. So, it shouldn’t have surprised me there would be hundreds of other Kathleen Quigleys in the world. May I be the only writer; and if I’m not, so help me whichever god you pray to, that she does not write schlocky bodice-rippers.

Are you wondering why it’s necessary to have a website, to build a brand, build an

charlottes-web

Garth Williams illustration from Charlotte’s Web by E.B. White

audience, etc.? More and more agents and publishers want to know that writers, especially nonfiction writers, have a following. In these days of swipe left, swipe right (I’m not sure which is best) a great website is one way to capture attention and audience members. And, it also allows writers a way to make writing a less lonely venture. Not that I’m lonely. My virtual attic is well-populated with friends and family, my Rowdy-boy, and spiders galore.

 

Stay tuned for more about writing, life, and cancer.

p.s. No spiders were killed in the creation of this post. No pigs were eaten. Time to sleep.

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D-Day Anniversary

December 20, 2013. D-Day.

Thank you, Dr. Peterson, for insisting that I needed a biopsy, which resulted in my diagnosis. Five years and counting in my war on cancer. I hate that. I hate that we – not sure who the we is in this – we talk about cancer in militaristic terms. If cancer is what kills me, nobody better say ‘She battled so bravely.’ It’s bullshit. I would no more fight a war than I’m capable of fighting cancer, battling bravely, or joining the war on cancer.

What I can do is live. Live my life to the fullest. Although, right now it doesn’t feel as if I am. Some of that is my doing. Maybe most of it. Choices. Circumstances. Mortgage. Health insurance. Reality.

Most of you know that I also hate when people say ‘your cancer journey.’ It makes me want to throw up in my mouth. Do people say crap like your Crohn’s journey, which to me sounds like a never-ending round-trip voyage to the toilet? Or perhaps your Alzheimer’s journey, a trip to destinations you forgot along the way? No, because that’s bullshit, too. No disease is a journey or a trip, unless you’re addicted to LSD, then you can trip to your heart’s content. I think when people talk about cancer as if it’s a journey, they are trying to soften the thought in their own minds, certainly not the patient’s. The patient knows and fears all of the detours, wrong turns, one-way streets, bumpy roads, dead ends, that s/he will take along the way. The person uttering platitudes is probably saying a little prayer that they’ll never have cancer.

With ER+ breast cancer, I will never be cancer free. From the perspective of insurance companies, if (when) I make it to five years (counting from the end of treatment) they will consider me cancer free; however, with an estrogen positive tumor, it can recur decades later. Isn’t that fun? One of life’s little ironies: estrogen is a double-edged sword; it giveth and taketh away the breasts. What I, as a survivor, look forward to when I go to my doctors’ appointments is NED. Not some hot guy named Ned, but No Evidence of Disease.

If you know a hot guy named Ned who wants to take a journey with me, have him look me up. I’ll be living and traveling.solo travel

And, thank you, dear friends and family, for loving me throughout all of the years, but especially these last five years. I couldn’t have done it without you.

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Another One Bites the Dust

A few nights ago, my son and I were driving from Wisconsin to Omaha. I checked Facebook during a lull in one of the podcasts he had downloaded and saw a notification from a group page started by a lady out in California who had been diagnosed with breast cancer about a year before me. One of her friends had posted that Megan had died.

Here are a few things I know about Megan, another ‘friend’ I never had the chance to meet.

She was brutally honest about her treatments. In fact, the photos she posted of her large radiation-burned breast scared the bejeezus out of me. It looked angry, militant.

Her cancer recurred although she said she had been declared cancer-free. Sidebar: I thought that was carelessly optimistic. I’m not a doom-and-gloom person; however, I have researched enough to know that if you have estrogen positive breast cancer, you are never cancer-free. You may exhibit No Evidence of Disease (NED), but you will not be cancer free. (If you have triple negative and you make it to 5 years post-treatment, you are cancer-free.) I crossed my fingers and hoped.

She had a beautiful smile, huge brown eyes, gorgeous dimples, and a zest for life. She went skydiving after her initial round of treatment was completed.

Megan was diagnosed with Stage IV metastatic breast cancer in the summer of 2017. She felt so betrayed by Western medicine that she decided to go to some alternative clinic in Mexico where they sold her on some bullshit diet and supplements. She declined chemotherapy. For several months she posted upbeat, positive accounts of how much better she felt…until she didn’t.

While she was doing the alternative treatments, she got engaged and seemed to have a wonderful relationship with her fiancé…until she didn’t. They broke off the engagement. Cancer can decimate relationships along with healthy tissue and tumors.

She went silent for a few months as the realization hit that her cancer had continued to grow. She started a strong chemo cocktail and did not respond well. A few months went by with another lull in posts as she continued to feel shitty and her cancer continued to invade her organs.

A couple of weeks ago she posted that she had 3 options: 1) hospice, 2) try some infusions to keep her comfortable, and 3) try other aggressive chemotherapy. She asked her FB community for stories about real cures so she could pursue a viable cure.

Another lady and I both urged her to get her tumor tested for Her2 status. The other lady had a multifocal tumor (I think that means that her tumor was comprised of more than one tumor – this is probably why radiologists do multiple aspirations when they do the needle biopsy.) I don’t know if she did. She insisted that it had been Her2-. Breast cancer tumors can change status. They can start out as Her2- or Her2+ and switch. Just when you think you know what you’re dealing with, it changes like some sort of freaky alien.

What I do know is that her cancer seemed like classic Her2+ breast cancer. I just finished a book called Her2 by Robert Bazell about the discovery of the Her2-neu oncogene (proteins are outside the cell) and the development of Herceptin (antibody that attacks and disables the protein).

bone metatasis

Beautiful picture of an ugly tumor

Megan’s cancer behaved like the women’s tumors in the book. Aggressive in recurrence, first manifested in her bones, then spread to her liver and lungs.

I may have said this before on my blog. I can’t remember. The subgroup of patients that seems to not do well with breast cancer is young, educated women who forego chemotherapy until it’s too late. I don’t know exactly what to think about this. Could it be like the anti-vaxxer movement? Or, has the internet and the spread of snake-oil cures poisoned our thinking? What I am fairly certain of is that Megan would probably still be alive if she had pursued chemotherapy in conjunction with her Mexican cocktail.

It’s too late for shoulda, coulda, woulda. I don’t know if she had regrets. I know she really, really wanted to live and pursued what felt right to her. If I had really known her, would I have told her what I thought about not trying Western medicine before the alternative? (As a point of clarification, alternative is not the same as complementary. The Mexican cocktail was to be taken in lieu of chemotherapy. Acupuncture, reiki, yoga, etc. are all complementary and can help minimize or offset the side effects of chemotherapy and radiation.) Would I have urged her more strongly to have her tumor tested again? I hope so. The thing is, Megan seemed to not want advice. She was dead-set on pursuing the treatment plan from the clinic in Mexico.

What I do know is that Megan’s life was cut short.

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(Wo)man down

A couple of weeks ago a friend of mine died. In this new era of friendship, Pam and I were friends although we had never met. She and I were members of the same club – the Fuck You Breast Cancer Club. She was much  more polite than I am. Right after my diagnosis, our mutual friend, Cindy, connected us on Facebook. Pam had dealt with breast cancer a couple of years before I was diagnosed and became my mentor and cheerleader. On our private messages to each other, we vented and commiserated about all of cancer’s collateral damage.

Pam was bubbly, zany, irreverent, full of life and love for her Shih-tzu, Katie, as well as her friends and family scattered all over the US. She loved to dye her hair purple and take trips to Disney World. She was truly a kid at heart. (I learned something new: Disneyland and, somehow, Disney World). That doesn’t make much sense to me, but neither does metastatic breast cancer.

Purple-hair Pam

My Purple She-ro

She was almost six years out from the end of her treatment and her breast cancer recurred in an unusual way. In early 2017, Pam had been having abdominal pain and her doctor discovered a free-floating abdominal mass. Stage IV metastatic breast cancer. That’s a bit redundant. Stage IV = metastatic. She tried everything she could, but finally had nothing left in her tank. She entered hospice and died within a few days. Saying goodbye to her dog was what really broke her heart. I think that accelerated her dying process more than the cancer.

Pam was my one-woman cancer support group. I pushed back on joining an actual support group. I hate crying in front of other people, even people I love. I am not a huge fan of emotional displays and freeze when faced with sobbing and gnashing of teeth, more out of self-preservation than anything. I may not be the shoulder you want to cry on. I think the primary reason I have avoided group therapy is I do not want to get close to women who might die. Yes. I know, I know. We’re all going to die sooner or later. I’ve never been in the military, so I wonder if veterans feel the same way about group therapy for PTSD. Are they afraid their fellow service members will commit suicide and leave them holding the emotional wreckage left behind?

Pam understood like only a cancer patient/survivor/thriver can when I told her that any new ache or pain immediately made me think about metastasis. A cough = lung metastasis (mets). A pain in the right abdomen = liver mets. Low back pain = bone mets. Forgetting words or details = brain mets. And those are the common sites. In Pam’s typical defying-the-odds persona, her free-floating peritoneal mass was one of the rarer types of metastasis. Extremely rare. Exceedingly rare. Hard to treat. Impossible to beat.

One of her Bucket List items was going to the spa where I work. Thanks to the generosity of my friends at the spa, her services were discounted and she felt pampered through and through. I was unable to meet her as I was away at a writing residency. I regret not coming back for the day to take care of her, but I know she supported my writing and wanted me to write a kick-ass cancer memoir for all of us. My coworker, Julie, spoiled her since I couldn’t, and I’m truly grateful for Julie’s compassionate care for Pam.

I don’t know much about Pam’s life before cancer. But, what I know about her life after and throughout cancer is that her enthusiasm for life was contagious. She was a loyal fan of her local hockey team–the K-Wings and would go to as many home games as she could. She was also a loyal Dodgers fan and would have rooted for them in the World Series. She made peace with God after her cancer recurred and found comfort in her faith. None of that comes close to describing how much her friendship meant to me when I needed it most.

I was going to have some startling statistics about metastatic breast cancer (MBC) for you, but we don’t do a good enough job of tracking it. In 2018, according to the Metastatic Breast Cancer Network, approximately 41,400 people in the US will die from breast cancer. Click here for more information. Over 268,000 men and women in the US will be diagnosed with invasive breast cancer in 2018–that would be about as many people living in Lincoln, Nebraska. My brain can’t make sense of large numbers. I have to compare them to something. What is one person compared to tens of thousands or hundreds of thousands? That one person matters so much more when they matter to you.

So, maybe I will join a support group after all. Maybe there is someone I can comfort the way Pam helped me. Maybe I will soften my shell and allow some pain in and out. Maybe I can help someone navigate the turbulent seas of diagnosis and treatment decisions. Maybe I can stop isolating myself from feeling anything about cancer and allow myself to grieve for my friends, strangers, myself.

Maybe I can put my fears about recurrence to rest.grief fear

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What if…

What if you were told you had one year to live? Don’t worry–I haven’t been given a life/death sentence. But, I have been thinking about this a lot. Maybe the high profile suicides of Kate Spade and Anthony Bourdain and the outpouring of grief people were sharing on social media made me think about choosing mortality. Maybe the book I’m reading by Nina Riggs, The Bright Hour: A Memoir of Living and Dying, made me think about mortality choosing us.

The Bright Hour is Riggs’ memoir about dealing with and dying from triple negative breast cancer. Her cancer was particularly aggressive and continued growing while she was in chemo and radiation. She and her husband were teaching their younger son how to ride a bike and she tripped and broke her back. The cancer had devoured her L2 vertebra. As a writer, I’d love to have been able to talk craft with her and discuss her process. As a cancer survivor/thriver, I’m just pissed. Pissed that this disease can be so unpredictable and take so many people before they have had a chance to live a long life.

At one point in her memoir, her husband tells her that he can’t wait for things to get back to normal. She responds, “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other. There might not be a ‘normal’ from here on out.” He thinks she is in denial about her cancer. She replies, “These days are days. We choose how we hold them.” I’m only about 100 pages into the book, but have been stewing, mulling, chewing over her finely crafted prose. It’s a good thing I have plenty of opportunity for quiet in my life.

Here is what I’ve been thinking about and trying not to think about: what if I had one year to live? For shits and grins, let’s assume that money is no object. what if 6.15

Would I keep working? No.

Would I try to run another marathon? No.

Would I enjoy running, yoga, swimming, and biking, etc. for the pure pleasure of  moving my body in the world? Yes.

Would I eat well and avoid alcohol? Yes and within reason.

Would I take medication to prolong my life? There’s a toughie. I don’t know. I don’t want to choose mortality. Abstaining from medication that might buy me more time seems like slow-motion suicide. I suppose the side effects of the medication would dictate whether or not I would be willing to take it.

Would I travel? Hell, yes. Would I tell anyone where I was going? As tempting as it might be to just disappear like Brad Pitt in Legends of the Fall, I’d want to see friends and family I haven’t been able to see for a while. I’d like to go to Australia with Jake and see it through his eyes. I’d like to go to Germany with Ute and experience her homeland through her eyes. I’d like to bicycle through Europe with friends.

Would I turn back time and say yes to opportunities I passed by? Perhaps, but only if I could still be Jake’s mom.

Would I do impetuous dangerous activities? Probably not.

Would I write? Duh. Of course.

Would I try to finish some projects like all the quilts I have purchased fabric for? Within reason.

Would I work in my garden? Yes. It is my oasis.

Would I move? Hmmmm. I’m not sure. I don’t want to live here forever, but if I only had one year to live and didn’t have to work, I’d probably fulfill my lifelong dream of living in France or somewhere else.

Would I write letters to everyone who means the world to me? Yes.

Would I get married if the opportunity presented itself? Yes, as long as I wouldn’t be saddling my partner with massive medical debt. I can imagine that personal ad, “Single woman with one year to live seeks life partner for short term assignment.”

What if we each lived as if today were our last day on earth? The idea exhausts me. The notion of trying to cram a regret-free life into each twenty-four period is untenable for me. However, like Nina Riggs said, I can choose how I hold each day.

For now, I’ll choose honesty, simple pleasures, nice chocolate, true friends and family, my crazy groundhog-eating dog, staying physical, and a nice glass of red wine now and then. I’d like to take a long road trip with Jake and see the federal parks. A long highway, hot wind on our faces, a cool soundtrack and companionable silence with hawks swooping overhead.

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HYPERTEXT REVIEW – FLASH FICTION – Hypertext Magazine

A little shameless self promotion. Check out Hypertext Magazine for some amazing fiction, essays, and more–including my flash fiction!

https://www.hypertextmag.com/hypertext-review-flash-fiction/

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In Stride

I spent the day at Froedtert for my semi-annual check-up and also got to hang with my friend, Margie, for her penultimate (gawd, I love that word) chemo appointment. We have the same oncologist. Margie asked me to come into her exam room with her, so Dr. Cheng looked totally confused when he saw me sitting there.

It felt like an out-of-body experience to be a witness to my friend’s appointments as well as have mine in the same day. Mondays in chemo-land are always behind schedule. One great thing about Dr. Cheng is that he will take whatever time he needs to take with his patients. The bad thing is that it sets up a domino effect. He was late to see Margie and he was late to see me, which meant that I had to miss hanging with Margie during most of her chemo. At least she was able to nap and I was able to read more of O Magazine than I needed to. I now know what kind of clothes I should be buying this year and that Reese Witherspoon has her own lifestyle brand that Oprah was willing to plug most likely because of their shared experience in A Wrinkle in Time. What is it with celebrities and their lifestyle brands? Is it similar to their need to have a Cause du Jour?

Other than the fact that I don’t feel like a female anymore, I have no issues. Sure, I worry about all of the women I know who have had cancer concurrently with me are dying, have died, or have had a recurrence and are dealing with metastatic cancer. That sounds like I’m taking it lightly. I’m not. It weighs on me each and every day. Why them? Why me? Why any of us? See, this is one of those reasons I do not believe in higher powers. If there was such a thing/being as God/Allah/Buddha/Whatevs – then cancer would be reserved for child molesters, serial killers, school shooters, etc. Normal people like me and my friends would not get cancer.

I told Dr. Cheng that I am bone dry everywhere (I gestured to my vagina, my eyes, my nose, all over), have no desire, and don’t feel like a woman anymore. He nodded and said that he has heard that before. He said he can refer me to a specialist in the Wish Clinic. Of course, my sarcastic mind went straight to the “I Wish I Was a Woman Clinic” – who names these things? Someone with good intentions, no doubt. I can’t take an estrogen cream, so I have no idea what the doctor will suggest. Maybe the doctor is like a fairy godmother and will grant me three wishes. One of which – no cancer – is impossible.

We had our ongoing discussion about whether or not I would continue taking Exemestane (aromatase inhibitor) beyond the five years (1.5 more to go). There isn’t much statistical benefit to continuing beyond five years. Single digit. Not big enough in my book. Sometimes, I think what the oncologists are selling is fear. I told him we could keep having the discussion, but that I’m not convinced that anything beyond five years is going to make that much of a difference.

The only blip was the results of my bone density test from October. My spine shows bone loss – osteopenia. Ha! I almost typed – did type – osteopenis. Bone boner. Osteoporosis is -2.5. My spine is at -2.

abstract shapes, bone structure

Bone. Looks like abstract art – especially a Shannon Goff sculpture.

I attribute that to two things. I’ve been taking half the dose of calcium because I can’t be bothered to take pills twice per day and I virtually quit running after the Chicago Marathon in 2016. I burned out. I told Dr. Cheng we could wait until my next bone density test to see if my bone loss has reversed.

I’ll be running a marathon in September in honor of my friend, Lori, who just died. Fucking ovarian cancer. The silent killer. Maybe re-introducing weight-bearing exercise will help. That and upping my cottage cheese and salmon intake and taking a calcium pill mid-day — all of those things should help. If I lived someplace sunnier and got more Vitamin D, then that also would help. Does anyone want to marry me and move to Spain, the South of France, Mexico, or Australia?

One of the ongoing conundrums of cancer treatment is that you get to choose your poison. In my case, it is the aromatase inhibitor which leads to bone loss, dementia, and heart disease — oh joy! But doesn’t lead to uterine or endometrial cancer or pulmonary embolisms — oh double joy! So, I will suck it up and run, run, run. Run for me. Run for Lori. Run for Pam. Run for Patty. Run for Waid. Run for everyone affected by cancer who cannot run. bone running xray

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