Skeletor

When my nearly forty year old son was about three, we sometimes watched the cartoons He-man and She-ra on our tv set that picked up few stations. We didn’t have cable and this was 1985 in far East Tennessee. The villain on He-man was Skeletor. That’s what I’m calling myself these days —not bc I’m a villain but bc my ribs are KILLING me. I’ve moved on from hydrocodon to stop the pain in my ribs to slow release morphine. The pain is so bad it hurts to breathe and tears come to my eyes. I’m hoping these ribs which appear to have broken recently will eventually heal. I’m worried, though. The broken ribs are a result of excessive radiation. I had been warned about that by my rad doc even before my 100th treatment.

I’m getting radiation again to shrink my liver lesion which has doubled in 3 months. I had liver biopsies two weeks in a row to see if my cancer has mutated. The first time they missed it; the second time they got the cancer tissues but i think doc may have pushed on my ribs bc i woke up needing fentanyl and liver biopsies don’t normally hurt. Haven’t gotten the path yet so I guess i’ll stay on Trodelvy which is a targeted therapy with monoclonal antibodies

Sunday morning I woke up in a great deal of pain and Dan brought me an oxy. That’s when it all started about a week after the last biopsy.

This week might be a challenge. Radiation (Tues, Wed. and Fri.). and chemo on Tuesday. I’m grateful for good, legal drugs :). Send me healing vibes! Thanks!

Heal

Bare Branches

After fall winds and rain sweep

through and remove

colorful fall leaves

the trees retain a special beauty

all their own—

their tangled stark branches

contrast against 

the blue morning sky.

I am slow to rise this morning

but the bare trees outside my window

bring me comfort

as I think of my lingering cancer

and how it’s stripped me of much;

my hair, the use of my left arm,

sensation in fingertips and feet.

But there’s new beauty in life—

of moments savored over meals​

the joy that fills my heart 

when flowers are left on my doorstep

and I am grateful for bare-branched moments.

I can see the endless sky better.

“Heal”—That’s the word for the day. I was honored to be included in a collection of art and literature with some of my best poetry friends and artists. Our theme was heal. The poem above was published in the 2021 fall/winter issue of Pigeon Parade Quarterly. It’s available on-line and hard copies available at Union Avenue bookstore, Knoxville Many of us will do a zoom reading at 2 pm on Sunday, October 17. If interested please rsvp to rsvp@uniomavenuebooks.com. Who knows which wig I’ll be wearing that day? Red? Super red? or maybe bald. Tune in and see.

News of my latest CT scan. The cancer in my liver has doubled so I’m looking at a liver biopsy on Oct. 19th to see if my tumor has mutated to a Her2 tumor or hormone positive instead of triple negative. If so, other treatments are available. I’m also looking at one of various ways to take out that one 4 cm spot. Will happen very soon before this evil tumor spits out seeds of cancer to other spots. In the meantime, I’ll continue on Trodelvy which I got yesterday and my dose of steroids so I’m up writing at 4 am.

Fortunately the cancer doesn’t appear to be anywhere else but CT showed 7 fractured ribs (some broken) from so much radiation. I’m finding it hard to keep my shoulders up without support of ribs so I’m hunching over despite yoga and exercise. I just bought a back brace so we will see if it helps.

But for fun news, several things have happened. We’ve become doggie parents again. We’re calling him Dude—compliments of Lisa Mullikin who graciously kept him his first night away from Noah’s Ark shelter. Long story. But she said he was laid back at her house even with her own 2 dogs and they just called him Dude. So he’s Dude aka the big Barkowsy. Photo below. And he’s so sweet. He is learning to “heel” and sleeps above my shoulder on couch as i write. He makes me happy and forces me to walk more which I don’t mind. He’s a 3 yr old part poodle and part shitzu

BTW the kind Lisa also has art work in the Pigeon Quarterly and is retired prof from UT school of architecture and is now realtor extraordinaire. I love my smart, generous talented friends!

The reason we couldn’t keep Dude the first night is that Dan and I had traveled to gorgeous Park City, Utah to attend a metastatic breast cancer conference. There I promptly got altitude sickness because it’s 7,000 feet up. It hosted the 2003 winter Olympics—so it has some amazing skiing trails.

I didn’t stay sick for long bc Dan bought me a can of oxygen at hotel which helped but I had to miss opening ceremony. The doc asked me yesterday if I had been feeling more nauseated than normal, and I kinda shook my head no because I’m often nauseated. But I believe I have had more nausea. Plus I threw up in Utah which could have also come from my 4 cm liver lesion besides the altitude.

Fascinating conference—many brilliant women and men presenting the latest research on metastatic breast cancer. One true saying about breast cancer is early detection will save lives, but that’s not the whole story. Truth is breast cancer comes back even with those first diagnosed with stage 1 or 2. 30% of breast cancer patients who claim to be completely healed will become metastatic which is no fun.

So this pink month which is all balloons and fun to raise awareness of breast cancer makes those of us with metastatic breast cancer feel ambivalent bc these things are to celebrate survivors (and I’m happy for them) but after 20 years of awareness, most know about it as my breast cancer advocate friend Janice Cowden says. What we need is more money for research for metastatic cancer. Metavivor ( https://www.metavivor.org/) is one group that helps with metastatic research. If you want to help me and others like me donate to that group bc all money goes to them.

The metastatic conference showed how so many breast cancers are different. And not one word was said about how you’ll get cancer if you drink diet drinks, or use antiperspirants, or forget your vitamin D or drink coffee or whatever you fear (go to american cancer society to check facts—type in those key words). It often comes down to cellular level mutations and even your telemeres (which are improved with exercise) and your own personal mitichondria. I don’t think anyone would dispute that exercising and eating a healthy diet are good ideas but I have friends who used only organic meat and veggies and exercised and she still got cancer. And I met one young woman, Julia Maues, who was pregnant with her first child and she developed metastatic cancer. Hormones get out of whack and immune system shuts down in all pregnancies so that fetus is not detected as a foreign entity. Despite her rough chemos, her son is perfectly healthy and she has been metastatic for 7 years. She’s gone on to develop a metastatic patient advocacy group. If interested it’s https://graspcancer.org/.

One more thing. last week we drove to St.Louis to visit my son Matt and his wife Audrey. We had a blast. They live in the old Anhauser-Busch/ Lemp district, Mr. Lemp had a beer factory too, but I guess Busch beer beat them out and they went under. But what was left is a beautiful historic area, a German village, great restaurants, and 100 year old houses. Matt and Audrey live in one of them. Lovely, lovely restored home.

So I’ve been on the move even with chemo and an extracted tooth last Tuesday. My teeth are falling apart with so many chemos and dry mouth from that. Have you heard the knock knock joke? , Knock, knock. Who!s there? 2::30. 2:30 who? Tooth hurty time, time to get your tooth fixed. So trying to heal my teeth too. More later…

Hope you have a healing week—and avoid Covid and get your shots! Being sick sucks.

Not Dying Today

I love this poem.

The Thing Is

BY ELLEN BASS

to love life, to love it even

when you have no stomach for it
and everything you’ve held dear

crumbles like burnt paper in your hands,
your throat filled with the silt of it.

When grief sits with you, its tropical heat thickening the air, heavy as water

more fit for gills than lungs;

when grief weights you down like your own flesh

only more of it, an obesity of grief,

you think, How can a body withstand this?

Then you hold life like a face

between your palms, a plain face,

no charming smile, no violet eyes,

and you say, yes, I will take you

I will love you, again.

Poem copyright ©2002 Ellen Bass, "The Thing Is," from Poetry of Presence: An Anthology of Mindfulness Poems,

Despite a really bad weekend of nausea, no appetite, and the big D, i felt like giving up. But I finally went for a 3 mile walk (after a 2 hour nap) and decided “take that cancer. I’m not willing to give up and die” so I walked.

I had taken lots of drugs but nothing had helped. It’s this drug. It’s rough but hoping it’s working. I’ll know after my October 4 scan. I’m having trouble breathing too—so I may make an appt. to check my lungs with chest x-ray for plural filling again. Also I’m pretty sure a left rib broke again making it hard to inhale.

I posted a photo of the pie my friend Susan brought by Friday. I love anything lemon with this chemo but it also made me realize what an amazing group of friends I have. And how they’ve born with me for almost 5 years.

Wed. I leave for metastatic breast cancer conference in Utah. Will be good to get away. TN, according to Bill Frist (R) is number one in US for new covid cases and would be #2 in world. Anyplace other than TN would be safer. I have had my 3 shots and a flu shot so I’n prepared. But in TN we’re a small nation of idiots. 53% vaxed.

On the good side we’re staying at a castle-like place in Utah. I was given a generous stipend to attend so this is a real gift!

BTW here’s a great article from The Atlantic about the secret to surviving cancer. hint it’s not meditation or bring positive. https://amp.theatlantic.com/amp/article/619844/

Make Good Choices

I woke up mad this morning but also grateful for Trodelevy the drug I’m currently on. I know you all think of me as “have a happy day” kinda person but I do get angry sometimes.

Last year I was on a clincal trial (phase one) drug which had terrible side effects. My neuropathy, after 8 mo.on the trial, got so bad I now can’t dress myself without help. My lungs filled up four times and had to be drained and maybe the pressure fractured 3-4 ribs. my lymphedema is now so bad I can’t wear my cute clothes bc arm too tight.

I started the trial in late April 2020 and heard of trodelvy by June. I called the trial center and asked to go off trial and try Trodelvy. The director got on phone and kinda scolded me for suggesting I stop trial. She said it prob wouldn’t be a good fit—it caused diarrhea and neutropenia which I was susceptible to from other combos. So I reluctantly stayed on trial as my neuropathy worsened and my lungs filled up.

I felt ignored except by the kind nurses. Then my cancer progressed to my liver in Jan. 2021 and I could no longer be on the trial. They tried to get me to enroll in another and I said “no way” and thought I’d take my chances with trodelvy. My brilliant onco got me on trodelvy within 1 week. I’ve been on it ever since.

My last scan looked good and my skin mets were gone in two weeks. I never developed neutropenia and I can handle the diarrhea. The side effects from the trial linger horribly. I’m grateful for this drug and to be alive but I want my body back. On Sunday I will have a brain mri bc I’m losing some sensation (light touch) in my torso—it’s probably nothing but better to be safe.

The moral: do your research and be proactive. This is not to disparage all clincal trials bc we need them (!) but if something isn’t working, don’t be afraid to make another choice. And I had other standard of care choices before I went on trial but my cancer is particularly aggressive and I had tried 3 lines of drugs before going on trial. Maybe exhaust your standard of care drugs before trying a phase one clincal trial. But who knows? cancer is wicked and sneaky, Listen to a trusted oncologist or two. (Two kind docs suggested Trodelvy before I called center to stop trial.)

Olympic Gold

Since the olympics are finishing up this week, I thought I’d give a shout out to my dream team. What a week—2 long dental appts including root canal and chemo on Tuesday! Thank goodness for my dream team.

—Dr. Heesam Gharavi. He’s my 3rd oncologist but he’s a great listener and finds many things other doctors miss. He’s the one who got me started immediately on Trodelvy after my clincal trial failed. He’s always doing research and thinks outside the box.

—Dr. Grant Clark. He’s my radiation oncologist and has been always quick to answer any questions or present my case before tumor boards even though he’s incredibly busy in his practice. If i have a scan he’ll send me a screen shot.

—My own husband—Daniel, radiation oncologist— who has been a source of info and support over the past 4 years. He never minimizes my struggle and in fact tells me that he’s never seen anyone come through so much treatment for breast cancer and endured so many side effects.

—My dentist Dr. Steve Crippen who has repaired my crumbling teeth as fast he can. Friday, one of my teeth started causing me excruciating pain & he quickly called an endodontist who did a root canal that very day. But owwww my left tooth side still hurts.

—All of my friends from Breast Connect a website created by the amazing Nina Reinieri for women disgnosed with breast cancer. It’s a wealth of info. www.breastconnect.org.

—my many friends near and far who encourage me.

—My sister Bev Crippen who is an oncolgy nurse and is always available to help me.

—the many chemo nurses, radiation therapists, and staff who love on me and encourage me and dose me: haha.

—The cancer support community—so many good people there. www.cancersupportet.org

—My friend Polly Tullock who checks in with me nearly everyday and asks how she can help.

—My family. My daughter Elizabeth and her young family who provide meals and support and joy as i visit with my grands. My sons and their partners who live out of town but make me laugh, send me encouraging notes and make me so proud of them. And I have extended family all over US and they send sweet notes and say they’re praying for me.

—my neighborhood friends (you know who you are but won’t name bc I might omit someone.) Thank you for flowers, meals, wine, taiks, walks book recs. I’ve never had such a smart, kind group of professional /friends who humble me for including me in their warm circle.

Have a restorative, golden week.

Tomato pie: rituals, Emily Dickinson and other stuff.

Sometimes people ask me how I tolerate all these treatments. As of today i’ve had 30 Trodelvy treatments which some claim to be the toughest chemo yet. (I need to count but i think I’ve had 100+ infusions over 4 yrs I might hold a record according to Dan.) The Nurse practitioner (NP) said they use me as a good example to others who are starting with this drug bc I’ve been on it the longest. I’m hoping it will continue to work for me. I fast before and a few hours after chemo so I don’t know if that helps or not. But it’s one of my many rituals that organize my life and keep me going.

To borrow a bit from Forrest Gump, my life is kinda like a tomato pie which I make every year when my tomatoes come in—I say every year but I’ve only made it 3 yrs in a row.—who knew there was such a thing—I’d never heard of it.. (Thank you grad school friend Casey Cothran for the recipe which I’ll post below. ) Last year my tomato crop wasn’t so great but this year gangbusters with big boy tomatoes and cherry salad tomatoes.

Like Gump’s “you never know what you’re gonna get” my garden is different every year but it never fails to delight me since i try new things all the time. And planting my garden is the ritual that I look forward to every year after I weed the raised bed at the lake. Dan is a huge help and does most of heavy lifting, but he knows it makes me happy. My usual plants are basil, tomatoes, green peppers, mint & sweet potatoes this year for the first time. ;My husband by mistake pulled up my old rosemary plant so no rosemary this year). My garden brings me great joy as I am reminded of the cycles of life—I love to watch the plants grow, blossom and bear fruit. Yesterday my hubs found a tiny baby green pepper inside a grren pepper.

Other rituals that keep me sane often occur daily. I (mostly) look forward to the day’s walk trying to get in my 10,000 steps. it’s hard when I’m not feeling great or it’s super hot. And after i take a walk if it’s late in afternoon, I often have a Waterford crystal glass of good wine and use my lymphedema sleeve to massage my arm.

Weekly I love Thursdays! fresh market has $5. sushi, $5. roasted chicken, and $5.for varieties of fresh pizza. I also see my therapist on Thursdays and we talk about many things: among them living with cancer, how trauma can be stored in the body. A great book “The Body Keeps the Score.”

My other rituals include classes at cancer support community on zoom. Dan and I attend at least 3 yoga classes a week. We focus on breathing deeply in and out as well as the exercises. I also take 2 fitness classes, 2 days a week taught by Stephanie Chunn who is awesome. I have faithfully been taking her classes since 2018. (I have to be careful of my ribs however bc another one feels like it broke when I finished a plank recently.) I also take a monthly writing class with Donna Doyle and sometimes a monthly art class.

I also listen to digital audible books or podcasts when I’m cooking or walking. They make chores more fun. I’m addicted to the Irish writer John Connolly who combines a mystery with some supernatural elements. He writes about an American, from Maine ((ha! clever, main character, get it?) Charlie Parker aka Bird, named after one of my fav jazz musicians. Parker is not a musician— at least i haven’t seen evidence in any of his books. But he brings bad, scary ppl to justice and I love that.

I also love listening to historan Heather Cox Richardson at 4 on chemo day (Tuesday) bc she does a politics chat. She’s brilliant—trained at Harvard— undergrad, & phd in history. Now she teaches at Boston college and has a gentle spirit. She’s humble (never mentions Harvard) a lovely person and her partner us a lobster fisherman in Maine. She makes sense of some of the craziness that’s happening these days which keeps me calm. I’ve learned more history from her than all other years of history courses and she makes history so interesting.

Most of you know, kids do well with ritual & structure, so doesn’t it make sense adults would benefit too? Especially those of us with terminal illnesses? It’s human and comforting that we have some control with rituals when everything else is out of control. When my kids were little we would have all kinds of rituals, They knew dinner was at 6, for example, and Sundays we went to church.

I fully enjoy most days except when nausea/side effects are bad. I was told yesterday that the s/e of trodelvy worsens over time but I have DRUGS.

I don’t know when I’ll make it back to church with contagious delta variant and some in my church don’t mask/and or not vaccinated.. (another reason to vaccinate for ppl like me and small children. My granddaughter, age 6, got covid last year.)

We won’t reach herd immunity til 80%up to 90% of US vaccinated and we’re about at 50. “The spread of the delta coronavirus variant has pushed the threshold for herd immunity to well over 80% and potentially approaching 90%, according to an Infectious Diseases Society of America briefing on Tuesday.” .(https://www.bloomberg.com/news/articles/2021-08-03/delta-s-spread-seen-pushing-herd-immunity-threshold-above-80%)

Fortunately I have some “fellowship.”I meet with a monthly movie group, composed of ppl I met at my church, All Souls, and we discuss a movie, bringing our own food to one another’s house. We’re small. About 8 of us, Date night. And all vaccinated and will mask if inside. Afterwards someone in group prays for us all. And on Thursday nights I zoom with smart, thoughtful besties, whom I adore.

I know that many of you wouldn’t skip your weekly worship service, but as my poet friend Emily Dickinson says in poem 236:

Some keep the Sabbath going to Church –

I keep it, staying at Home –

With a Bobolink for a Chorister –

And an Orchard, for a Dome –

Some keep the Sabbath in Surplice –

I, just wear my Wings –

And instead of tolling the Bell, for Church,

Our little Sexton – sings.

God preaches, a noted Clergyman –

And the sermon is never long,

So instead of getting to Heaven, at last –

I’m going, all along.

Don’t get me wrong bc I have always loved churches——friends, potlucks, sermons, the rituals. When my pastor brother was killed in a car wreck taking a young woman to AA, I was in church all the time. twice on Sundays—different churches and on Wednesday nights. Those things helped me survive my grief. So I’m grateful for churches.

i promised a recipe so i’ll post. Continuing the tomato pie analogy—my life is as tasty as a tomato pie, sweet, savory,, delicious and filled with the abundance of earth. Have an abundant tomato pie day (if you hate tomatoes skip my rec) and think of all the rituals that keep you going! Now onward to dentist!

I Believe in Unicorns

The goal of many with breast cancer is to be a “unicorn”—you know that mythical beast that kids and artists have loved. The breast cancer unicorn is someone who has survived or become NED even with the deadly and aggressive metastatic triple negative breast cancer.

My newest scan shows a faded liver lesion which may or may not be necrotic tissue according to 2 docs bc it didn’t take up the dye that lights up cancer,

Dan & another doc have proposed a liver ablation—a surgery to get rid of lesion. Not all docs on board with that although they will present at tumor board.

My side effects from Trodelvy are my biggest worries. My ribs still trying to heal, while my range of motion quite limited. Still hard to dress myself because of finger neuropathy. Had to get receptionist at CT desk to button the back of my shirt. Also I continue to have controllable GI stuff but it’s annoying.. And I have dry mouth which has caused me all kinds of cavities!!! I’m not supposed to have aggressive dental work done bc of the monthly xgeva shot I take to stop bone metastasis. I may be a toothless unicorn or one with dentures.

I had 4 B-12 shots last month and will get once a month from now on. They have helped with fatigue. I’ve had about 100 chemos and my poor body has taken it!

But I’ll take side effects if it stops cancer and i can be a unicorn. I’m almost there.

And i’m including a photo of me in front of the sunflowers at ijams nature center Went for a walk with a friend after chemo. I missed flowers last year so was determined to go even though walk was long and hot, But we should enjoy the joys of summer! As a unicorn I’ll enjoy many more summers.

My Octopus Teacher

Just kidding. It’s really an image of my triple negative cancer—something I found on the trodelvy website. Ugly but cancer has taught me a great deal, My new drug is Trodelvy “an immune targeted therapy medicine. It is made up of: sacituzumab, a type of molecule called a monoclonal antibody, that targets the Trop-2 protein; the Trop-2 protein is found in more than 90% of triple-negative breast cancers.”

I feel very fortunate to be able to get it. It was approved in late April 2020 and skipped last leg of trial bc it was so effective. It has not been approved in the UK, other parts of Europe, Asia and Australia. One metastatic friend in India is lamenting her lack of access. Her husband mentioned that the drug is very costly—i’ve heard estimates from 35,000 to 90,000 an infusion and I get 3 a month. Thank God for medicare—wish everyone could get. I’ve mentioned before that I haven’t suffered with neutropenia (low white cell count which can be deadly) bc of my own genetic makeup. If you have two homozygous allels with a certain protein this drug can almost kill you. Apparently I don’t have them. My latest scan shows that in 3 mo. the drug has shrunk my liver lesion—cat scan says mild decrease but Dan calculated it has decreased the volume of the tumor by half.

But it’s a tough drug. People see me and say it’s good you’re doing so well. Am I? yeah well except for the 2 broken ribs that they gave me morphine for (and I haven’t used) and the other 4 fractured ribs I’m babying. Old radiation treatments caused these ribs to fracture and break. The doc who read scan in January didn’t even notice the 6 fractured ribs! you’ve got to double check everything. They were there but doc missed. I know bc Dan and I looked at Jan. disk! Helps to have a doc in the house.

When ribs break, they hurt horribly but pain goes away the next day. Last Monday I was in excrutiating pain (8 out of 10 even with hydrocodon). But by infusion the next day I was much better. It’s tolerable but feels like my body collapsing in on itself, and I was hoping to do exercises to stretch out back and chest but I’m fearful of breaking another rib so i stand hunched over.

Oh and drug has given me eye floaters, nausea and the big D frequently. Fortunately I have drugs to help but it all gets old. And when I asked nurse practitioner if/when i could go off chemo & she said that doc foresees me being on it til end of my life. Oh joy.

Nevertheless over the past 4 yrs I feel as if I’ve gotten an associates degree in oncology, :). My cancer teacher. Plus the good news is that the lung fluid is gone and drug doesn’t cause.

I’ve been slack about writing bc of treatment of course and I’ve had OT and PT ppl come to my house to give me tips for dressing, helping my neuropathy and increasing muscle strength. Great ppl but the trick will be for me to actually do the PT exercises. PT guy told me to work on posture & I tried to explain how surgeon pulled my back skin/muscle to my front & I had bad radiation burns that had caused the skin on my left side to harden. But he seemed unimpressed by my excuse for bad posture. I’m sure he’s heard it all.

The other thing that has slowed my writing was planning for and renting house at Emerald Isle North Carolina the first week in May for all 12 of us (kids spouses, grands). I don’t know if we’ll ever be together like that again. The week was magical with lots of good seafood—we all shared cooking or went out—although there were slight problems w/ sharing baths and so on even with 5 bedrooms and 3 baths. I’ll post a few photos below. My hubs has always been God of the sandcastle villages. My daughter Elizabeth Wiseman (follow her on instagram @ewisemanphoto) took the black and white photo. One night we also watched My Octopus Teacher which reminded me of Hobbe’s observation that life is nasty, short and brutish—even within a society. But the underwater scenes were spectacular and I was amazed the filmmaker could snorkel with no oxygen tanks for long periods. And it was sweet that he developed relationship with a young female Octopus. Boy was she ever a dedicated mother! Birth, love, pregnancy, dementia, and death.

But for me, all in all it was the best mother’s day week ever!

This post has gotten too long already and I will close with a mother’s day message from a friend even tho it’s past mother’s day—esp. since I began by discussing the intricacies of DNA:

“The prayer of a mother is more powerful than all other prayers. A mother is forever connected to the biology of her children. This metaphysical revelation has been known to all the great masters throughout time, and it's now confirmed with biochemistry. The heart and brain of every one of your tens of trillions of physical cells is known as the mitochondria, and this portion of each cell contains only the DNA of your Mother. This DNA -- the actual ‘light-code' at the center of life -- is the heart of your construction. Your mother touches you from inside every cell. Prayers, in the midst of this microscopic world, are the means of communicating -- heart to heart -- light to light -- core to core.

Your heart, like the brain, generates a powerful electromagnetic field. Measured as an electrocardiogram -- the heart's field is sixty times larger than the brain's, recorded in an electroencephalogram. Physically detected at great distance, your heart is a light signal, like a radio wave travelling out through space. The power of a mother's prayer comes from the mitochondria of every one of her cells -- a projection of the heart . . . DNA to DNA. This affects the light that surrounds her children . . . alters the light that constructs their physical bodies . . . literally alters the body's sensations of space within time. This planet is called ‘Mother Earth' because every single physical body is made from her nutrients. Your body originates from the nutrients of your mother's womb. The word ‘womb' means ‘the future' -- the word ‘woman' comes from ‘womb-man' . . . means the future within now. As you pass through life, you pass through these prayers for your future, created in your birth womb . . . the heart of the heart of your mother.

From the Guru Singh newsletter.

Sickness As Instruction

This will be an appropriate Lenten message. In my long career as a literature teacher, I have often had the opportunity to teach American writer Flannery O’Connor. Last night i watched a great new video on her life. Here’s a link to it if interested:: https://www.pbs.org/video/flannery-mxhspu/?fbclid=IwAR3aznR3EJqLNLO5nc_vxdg8NE3NjvIviTxx9Fbp-uSsVAVNrC2RfRSl59M

She died of lupus at age 39 so she understood what it was like to live with what was then a terminal illness. Despite her illness (and her own personal flaws) she went on to become one of the best writers of the 20th century. This quotation of hers from the film resonated with me. She said:

In a sense sickness is a place, more instructive than a long trip to Europe, and it's always a place where there's no company, where nobody can follow. Sickness before death is a very appropriate thing and I think those who don't have it miss one of God's mercies.

What happens when you have a terminal illness? Often you observe life more closely. I don’t always “cherish” each day as I should bc I may be in pain or nauseated or whatever from treatment, but I find life endlessly fascinating. I LOVE my friends and my family perhaps a bit more. They’ve all been so kind and supportive. Personally I don’t want to die bc of those reasons.

I have reason to believe my new treatment is working and at least it’s not filling my lungs with fluid. I had a chest x-ray on March 19 and little fluid left. There are other problems of course so please don’t say “I’m so glad you’re doing better.” It’s better to just say, “how are you doing?” bc i may not be doing better on that day. I will know more from my scan on April 19 to see if liver mets gone. But in the meantime my skin mets have disappeared so that’s great!! And I’m so very grateful for my strong body that has allowed me to withstand 4 years of chemo and other treatments. My heart still remains strong so all that running and bootcamps paid off bc sometimes treatments will kill you too. In Flannery’s case, a botched hysterectomy exacerbated her lupus which led to her death. Instructive for me.

In Just Spring

i thank You God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky;and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun’s birthday;this is the birth
day of life and of love and wings:and of the gay
great happening illimitably earth)

how should tasting touching hearing seeing
breathing any—lifted from the no
of all nothing—human merely being
doubt unimaginable You?

(now the ears of my ears awake and the eyes are opened.)

Feeling grateful today. Another brisk spring day but sunny, sunny, sunny. I even wrote a poem yesterday when I woke up to bright sunshine. I must be feeling better and even attempted cleaning.

I’ve been mulling over several things this week. I got my second covid shot last Saturday (Fauci’s ouchie as my friend Allen calls it). And yet my white counts continued to stay decent when I had my labs drawn on Tuesday. So grateful for my strong body and the lifestyle that has allowed me the luxury of staying healthy. (Good food, hours to exercise, social connections (family and friends), insurance, an education, therapists, antidepressants, the list goes on. I’m the epitome of white privilege.)

Here’s the other thing that I’ve been venting about. Most of you know my story. I’ve been in treatment for an aggressive form of tnbc for 4 yrs—metastatic tx for 2. I want to urge you to be pro-active about cancer care—it’s a science after all. It almost always comes down to genes. For example, drugs like tcentrique or keytruda didn’t work for me bc i’m pdl-1 negative which is what they target. And last yr I was warned off a fda approved drug bc it tends to make ppl neutropenic. My previous Dr. wouldn’t put me on although I asked. The side effects from her drug were killin’ me and cancer moved to my liver. Now I’m with on trodelvy at 100% dose and my white count is staying decent. This is what I found out (myself) about drug—ppl with 2 specific homogenous UGT1 A1 alleles tend to bc neutropenic on this.

I must not have that bc I’m stable. There’s nothing mystical about it. You don’t have a character flaw or a lack of faith or bad attitude or don’t laugh enough if you don’t get well. I get tired of such victim blaming. It comes down to genetic structure. Just because your cancer doesn’t go away, it isn’t bc you’re a worse person than person x whose cancer went away. It’s science and you didn’t fail—your drug failed you. If something is not working, address your concerns w/ yr doc. You know your body best. This is the best I’ve felt in a year and even took a short run last week.

Chocorua Landscape watercolor ee cummings (1894-1962).

TGIF

Good news all week. My new drug trodelvy really is a wonder drug for my cancer:

The year old cancer bumps on my skin flattening with my 4th dose. Also redness of scarred skin going away.

And my oxygen levels back to 💯 which is great since that last drug caused so many pleural effusions.

The drug is supposed to drop my white count (bad!) but it’s gone up one point since Tuesday’s infusion. I get my second covid shot Saturday so it was very important that my count stay high—or I’d need a shot to boost counts.

My Hgb (red count) went up one point. I’ve been pushing myself to walk and do yoga so it seems to have paid off.

i still get nauseated but it’s tolerable.

Just so grateful for this drug when so many have failed me. Fingers crossed for future! I’m really trying to reduce stress bc i think that affects my body. I’ve done many hard, stressful things in my life, I promised my body not to do anything socially that stresses me out.

Have a great weekend! Thanks for all the prayers and love!

Explaining Terms

I realize many are baffled by terms metastatic breast cancer patients and other cancer patients use to indicate their cancer is at a good place.

1. Ned—no evidence of disease Dan likes this term best.

2. NEAD - No evidence of active disease. This a newer term than NED bc it also addresses scarring (dark spots) on cat scan that may have once been cancer like the dark spots on my ribs. But they suspect no active/new disease on cat scan.

3. Remission - my resident expert (Dan) says sometimes docs still use but it’s not very useful. Maybe if your cancer is taking a break for years. stage 4 is not curable so it leads ppl down an unrealistic path.

4. Cancer-Free - Not a term i will ever use. cancer cells float in the body and are just dormant usually til triggered. everyone has them but mine will always be there and ready to act bc of my primary tumor.

me: ogliomestatic: means that person is metastatic but cancer just in a few places

here’s a great link on what not to say to someone with metastatic cancer. it won’t take you there directly but copy into browser.

https://www.healthcentral.com/slideshow/what-to-say-to-your-friend-with-metastatic-breast-cancer?ap=818&fbclid=IwAR1xWY3NSNEcp5XoeUCiyLst0lqd1Z2kfLLa71KlcaAqj0KB4m2MROCYpfQ

One of my fav. analogies about living with metastatic cancer is “yes we’re all gonna die someday but i’m standing in a four lane highway with no signals and you’re on the sidewalk.”

And I really hate it when someone tells me their Aunt Betty had breast cancer and she’s fine. i want to say “so what? what stage was she, what type of cancer, what grade (level of aggressiveness) did she have?” so many variables.

Please don’t tell me she is cured bc she had a double mastectomy. Yes, there’s a t in that word. Just heard from two friends who had that and reconstruction and their cancer returned within a few years and they went through all that trauma.

So some steroid ramblings from chemo yesterday,

Live in the Layers

I stole the title from a line in Stanley Kunitz’s poem “The Layers.” I’ll include more of it later.

This month has had its sorrows and joys. As I’ve noted before the cancer has now moved to my liver and I’ve started a new chemo regime of sacitumizab. I’m on for 2 weeks and off the third. It does drop my white count and gives some GI distress but i think i can tolerate well. The clincal trial drug caused problems too—my lung lining filling up, glaucoma, exacerbated my lymphadema, neuropathy so my fingers don’t work, fluid retention in general. I’ve lost 10 pounds since I’ve gone off it and hope that the fluid in my lungs has stopped. My lungs were drained a few weeks ago and had the most I’ve ever had drained on right side—850 ml. Left lung wasn’t drained. (see photo below.).

For valentine’s day i just sat in a chair all day—watched Netflix and chilled. My hair is falling out for the 4th time which is never easy. I thought maybe this new drug wouldn’t do that, but I took a shower and it came out in my hand. It had started to come back after being off taxol for about 6 weeks.

I am tempted to have a pity party and then I hear about a metastatic sister suffering more than I am and last week a dear friend had a full term stillbirth. Life is not always fair. and after a conversation with a friend who is suffering we both concluded if there’s a God, great, if there is not, we can accept that too. I’ve been given so much in this life and I am grateful. Personally I like to believe God is real as I look at the beauty around me and experience love.

And now i can write about happy! 25 poetry friends got on zoom, wished me happy birthday, told me how I had impacted their lives and read a favorite poem or one they had written. My friend Marilyn had even written a poem using my name!!! What an honor.. And then my friend Nancy said “Go to the front door.” And at the door one of the hubs had brought a copy of all the poems in the box in below photo. Marcia Goldenstein, UT emerita, and artist extraordinaire, hand painted the cover with January’s flower, a snow drop. I am so very grateful for these friends who keep me going. Best birthday ever!

And speaking of poetry, here are the ending lines of Kunitz’s poem:;

“and I roamed through wreckage,

a nimbus-clouded voice

directed me:

“Live in the layers,

not on the litter.”

Though I lack the art

to decipher it,

no doubt the next chapter

in my book of transformations

is already written.

I am not done with my changes.“

So that’s what i’m trying to do—live within the many layers of my life and not on the litter—regrets, failures, anger, doubts and sorrows. And more good news—got a new arm pump that massages my lymphatic left arm. I put the sleeve on for an hour. Love new toys.

lung lining fluid

my new lymphedema pump

“There is always light if only we're brave enough to see it…”

I haven’t written in a month, so I thought I’d update. My title is a line from 22 yr old Amanda Gorman’s amazing inauguration poem. So uplifting. Poetry is like prayer.

I needed to hear those healing words yesterday when President Biden sworn in. And the following is the reason why.

On Monday after a very busy day of scans and trying to get in to see a doc, I received the bad news that I have a 2 cm liver lesion. Dan and oldest son David with me. Also I have 2 new bumps on my neck that nurse practitioner said are disease. Because of disease progression, I’m off the clincal trial but have options. On Tuesday i made an appt. to see my oncologist here and will probably start new chemo next week with sacitumizab. It’s a targeted therapy so that makes me feel good. However side effects are low white counts and diarrhea . The clincal trial drug wasn’t a total bust—it kept my disease at bay for 8 months and allowed my white and red counts to return to normal.

The clincal trial drug had some bad side effects. I expect my back/lung fluid is from the drug. And newest CAT scan shows lung lining filling again. Hard to breathe and climb stairs. Also my weekly taxol gave me terrible peripheral neuropathy. I can barely write or dress myself. I hope my limbs can recover.

Nevertheless I feel pretty positive. I’m trying to see the light and am excited about this upcoming year.

Covid Christmas

What do you think this tool is used for? (See photo.)

If you guessed salad tongs, you’d be correct but these days it’s serving as a tool to help me dress. Because of the neuropathy in my hands and lymphadema in my left arm, I can’t pull on tops or pants. Its very frustrating but I’ve ordered some real tools from amazon to help with dressing.

Many good things happened in 2020 but many bad things as well. The good things are always my loving friends and family. But quite honestly the election had me on edge but things seem to be smoothing out. God gave me a verse that comforted me: 1 John 4:4. “You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world.” I’m eagerly awaiting January 20. I just heard today of terrorist explosion in Nashville, so I hope ppl calm down—especially since I have to go there Monday for treatment,

For me, I was officially declared metastatic in June although technicalIy I was metastatic before then. The cancer going to my rib made me more aware it was on the move, however.

Also in June my 92 yr old dad died. He had a heart attack and died within a few days. His funeral was a beautiful military one and Elizabeth my daughter (and her sons) came with me. Dan may have been working.

In September I broke my ankle. Now that was interesting since I’ve never had a broken bone. Fortunately my dear sister Bev broke hers a few years ago and had the boot I needed. She also kindly drove me to ortho. I slept on sofa bed downstairs so I wouldn’t have to climb. But I was back driving to Nashville after a few weeks. Better now but have to wear compression stockings. My therapist said I looked bad the week I broke my ankle, had a uti, and my lung lining was filling, so i must have looked bad.

The covid deaths have bern horrendous. Right now Tennessee ranks as number one in nation for greatest number of covid cases. Dan got a covid shot on Monday at Crossville where he was working but many weren’t getting shot although offered.

And speaking of death, my sweet 13 year old dog started growing an inoperable mouth tumor, and we had to put her to sleep when it seemed to be causing her pain as well as bleeding copiously The vets came to our house. This was around the first of December.

i also had another thoranthesis (left side) at park west hospital after my echocardiogram showed fluid in lung lining. He drained about 500 ml and said an equal amount was in right lung but he would only do one at a time. He seemed skeptical of the urgency of the draining but when i went back to see him the next week, after a chest x-ray, he was much more subdued bc the fluid was already returning. I’m having shortness of breath, but I told him I’d try to wait til end of January to have another draining. I’m due for another Cat scan and bone scan about January 22, and we will see where we are. The doc at park west was not as painless as the one in Nashville. Not sure why.

I was excited to learn that the editor who accepted my poem for Jama teaches at Harvard medical school. That makes me even more excited about the publication of my poem—probably the high point of my year. https://well.blogs.nytimes.com/2013/02/04/finding-poetry-in-cancer/?referringSource=articleShare

And now Christmas. What could have been a quiet Christmas, ended up being wild and fun. My daughter and her family came for dinner (they’ve been isolating for 2 weeks and all just had covid tests). Daniel Wiseman’s dad who is a part of our bubble also came. But it started snowing and snowing, so we had a rare snowy Christmas eve and Henry and Hugo were here with us for Christmas morning! It was a very special time!

And now i’m including a photo Elizabeth took Christmas Eve to show I’m not all gloom and doom. I’m glad to be alive! It takes me an hour to dress and I can’t write finger-wise for crap bc of neuropathy but this insidious disease hasn’t gotten me down yet. I know 2021 will be a better year: The bright conjoining of saturn and jupiter was a good omen and now the special snow. New president, less covid cases we hope, and maybe a better drug for my cancer—and perhaps the lung lining filling will get resolved (It’s probably caused by my clincal trial drug that I’ll be on indefinitely).

Nevertheless I have great hope for2021!

The woman with a spigot on her back

I imagine myself as a surrealist painting. I’m sitting on a table partially clad with my back to the audience. And on my back is a small spigot protruding from my left lung.

A week before my brave friend Pam died of breast cancer, she said “this is so surreal.” I knew what she meant. With all the advances in science, we are still given a death sentence when both of us had spent our lives doing healthy things.

I’m feeling a little sorry for myself today, so I even ate a small McDonalds hamburger and a small fry. I felt like I was in a time machine bc in Burlington, NC my family used to go to McDonalds on Friday nights when the chain first opened (if we weren’t at Zac’s hotdogs). I would also often get a chocolate milkshake which I’d promptly spill in the foot of the backseat. I skipped the milkshake this time, but the food comforted me and made me feel young and healthy (haha) before old age and cancer set in.

Today was my duty-bound day for Sarah Cannon as an exchange for being on clincal trial for free. They make appts for an extensive echocardiogram and two eye appts every 4 weeks. Small price to pay. I get my eyes dilated twice so good thing hotel close. Tomorrow is my infusion.

When tech did my echocardiogram she said there was fluid on my left side. I had been short of breath even going up stairs or doing simple tasks. And my chest is as tight as it was when my lungs were drained Nov. 3. It’s only been a month and they’re filling again, so i’m having a pity party. Yesterday when i got to the hotel I was so tired i could barely move. I keep thinking/hoping I’ll get better, but it feels like a slow decline.

And I’ll probably be putting my poor dog to sleep on Wednesday. She has a bleeding mouth tumor and like me is not getting better. Dark humor here but I begin to wonder when it will be my time to be put to sleep. Loss taps into loss (a little spigot humor-taps?) Both patents have died during the past 4 years i’ve had cancer too. Merciful deaths but still hard and sad.

According to Hilary Mantel, during the Spanish inquisition “heretics“ had their heads and eyebrows shaved and were forced to march down the streets wearing white robes. It was to make them appear invisible. Maybe that’s what is happening to me as I fade away. I’ve always been kind of a heretic. I think of that when i look in the mirror and a bald head and eyebrow-less face stare back. Honestly, I look like a little old man.

So like I said, pity party.

On the plus side, my eyes are so dilated right now that they look like dark blueberries. And it’s snowing lightly in Nashville. Pretty.

why old people like me dress funny

I used to wonder why grandmothers wore so many housecoats. You know the kind—they were floral and I’m not sure how they fastened? Zippers? Snaps? Pulling over one’s head?

But now I get it. I can’t fasten small buttons well bc of my neuropathy. i can’t even pull shirts over my head easily. So before I get dressed I consider how hard it is to put on. And when my ankle was still broken, I often slept in my clothes bc it was too hard to take them off.

And pants! I can’t pull them up bc of my neuropathy. Jeans are the hardest. I have to enlist Dan’s help to pull them up in the back. I also have yoga pants with no zippers which are still hard to pull up. So I often have saggy pants.

My lymphedema prevents me from wearing my stylish jackets. My arm is too fat. That’s bad enough but i can’t lift my left arm back very far or above my head. And I always look fatter bc the sweaters and shirts don’t slide easily over my arm—they bunch at shoulders.

I can easily put on terry robes that wrap or dresses with wide necks to go over my head! Sweaters with zippers up front might work.

So all these things are making me crazy. Although fortunately my doc has agreed to lower my taxol to improve my neuropathy. And my fluid in lungs came back clean—no malignancies! But in the meantime, I’m considering buying some housecoats.

Turning Blue

This week has been one for the books. And this post is mostly about breath and taking deep breaths. It’s also election week and everyone is holding their breath for outcome.

After driving myself to Monday’s chemo in Nashville (my broken ankle is better, thank you very much!), I met with Doc who told me my cat scan looked good except for excess fluid in my lung lining and that i was going to have a bi-lateral thoranthesis the next day. I had been having shortness of breath and pain in my rib areas but nearly everyone dismissed as inconsequential. I knew something was wrong. On the bright side the doc said my cat scan brought her joy bc it showed no cancer progression. yay!

On Tuesday I went to an adjoining hospital for a thorantesis. You know how it is; you get there on time and then there’s a run around with who is supposed to be where. Mix-ups on time—that kind of thing.

I had no idea what to expect. I just thought they inserted a syringe and drew out fluid. Dear Elizabeth met be there and took a video/photo of what they were doing. Dan was still under the weather (he’s fine btw) and decided to stay home to babysit dog and go to Doc. He was having shortness of breath over weekend and ER gave him meds to help. It was combination of head cold, that old esophagus problem from 2 years ago when gall bladder went gangrene, and lack of sleep. So I’m happy he’s doing better!

My procedure was more complicated than I expected. They numbed up my back in the (two) lung areas with maybe 4-5 shots each lung. I practiced the breathing exercises my somatic experiencing therapist taught me for relaxing as needle went in. You relax face and tongue (after you tighten them) and then start to tighten and relax diaphragm and on down to pelvic floor. And of course breathe in and out.

After I was mostly numb, the doc inserted a tube (which looked like a straw from picture). Doc said, you’ll feel a push here, and I imagined she was putting in a spigot. There are some risks. They can collapse your lung and so on, but I felt confident it wouldn’t happen. Elizabeth did some running commentary (ew!) but she was a trooper although I know it made her cringe.

Altogether Doc took out 1250 ml of fluid or the equivalent of almost 2 bottles of wine! No wonder my chest felt tight. I asked them to send fluid off for analysis in case cancer cells in lining.

I felt well enough afterwards to drive home. E. was on her way to St. Louis to work. But first we had a leisurely lunch at P.f. Chang’s on patio w/ their amazing wanton soup!

I like driving on my own although several ppl offered to come with me (thank you!). I often have to negotiate complications on trips like this, so it’s just easier if I don’t have to explain to companions. E. has been with me enough to know most of the ropes. Besides on Tuesday I was still flying on Monday’s steroids. I listen to my book on audible, and I’m home before i know it!

One more thing about breath. My therapist this week told me about one way to stop anxiety and even a panic attack. It’s to say the word “vooooo” till all your breath is expelled from your diaphragm. So if you find yourself anxious this week. Try that.

I’m hoping for good days ahead. I’m 5 pounds lighter. My scans look good, my ankle almost healed—she’ll release me next Tues. I hope. Dan feeling better, and David my son coming today. And continue to pray peace and wellness for all—including yourself.

Pull Up Your Britches!

Why am I giving that order? For several reasons:

Mainly because I need hubs Dan to help me pull up my jeans with my bad neuropathy in my fingertips. I can pull up front but can’t manage to pull up the back part. Also I appreciate his help to put on the lymphedema sleeve I have to wear 24/7.

I also posted that bc I’ve been a workaholic all my life—working since 16 (or younger if you count babysitting and yardwork). I was a server for at least 5 years. Then in college & afterwards I usually had 2 jobs even after marrying. I had two jobs working (pregnant twice) while working on my thesis—taught and worked at a store in the mall. When Dan decided to go back to med school I followed same pattern 2-3 jobs with 3 kids bc teaching pay sucked. My motto has always been, you can do this for a short time and things will get better! So I believed in pulling up my britches or pulling up my bootstraps to get a good life.

Finally when Dan got out of residency i started teaching at UT and was there forever. In the meantime, I finished raising my kids and got a doctorate, published a chap book of poetry and went to china to teach for 4 months. i retired at 62.

So when people look at my life they might think “wow, doc’s wife. easy life.” You have no idea. 11 houses bought and sold and many moves. I no longer believe in the britches or bootstrap theories. Sometimes you have no control over the bad things that come your way. And yes faith helps but not for everything.

And now my hub is combatting bad disease. Don’t ask me details. He’s very private. And yes i get i’m lucky i’m not doing cancer alone (although friends/family would never abandon me either). But as I’m trying to arrange my treatments, I’m trying to help him and worry. I’m trying to put on my big girl pants and carry on. I dreamt I was crying last night bc i was feeling sad for him. As theologian Oswald Chambers says about judging ppl , there’s one more fact to a person’s life you don’t know—so don’t judge.

My scans show no progression of disease in organs or disease but I have to talk to PA Monday to hear “officially.” I got copies of my scans on cd and advise that for anyone who gets scans. They are yours so don’t let anyone talk you out of it.

Dan and I looked at them and just saw an increase in fluid in lung lining which I am going to have drained at some point (thorantesis) I was going to have drained Tuesday but have to postpone til Dan’s better. I’m still going to Nashville on Monday to get treatment. Kids have offered to cover home in my absence. And btw my 14 yr old dog also has a tumor in her mouth so we truly are a cancer house. (Nevertheless antibiotics making her breath smell much better! so that’s good.)

Scanxiety and technology

Today I get a cat scan and bone scan to see if cancer stable or progressing. They are the first scans i’ve gotten since August—10 weeks ago, which may seem a short time to you but it’s been forever for me. It’s creepy to think about the possibility of cancer infiltrating my bones so I try not to think about it,

Here’s how a day like this goes. I’m in Nashville where we’ve been since last night. I gotta say I was proud of myself when i discovered that my hdmi cord was broken (there’s nothing on TV in hotel so we use my computer to hook to TV set. I’m quite the techie. Thank you UT). So despite tiredness from travel, i called cvs near Vanderbilt and they had one. So I slipped off supportive ankle boot and put on regular boots to drive the 1/2 mile. No big deal, right? Fortunately, I had found the impossibly hidden cvs one hot summer day when i was looking for panera’s so I knew I could find it.

I got the cord. All good. Then my computer gave me error messages that I didn’t have wifi etc etc. I was totally convinced i had blown up my computer w/ bad cord. But I patiently work with it 30 minutes or more. Finally I did what all good engineers do—rebooted system. and after updating, it started working. it’s the little successes, so Dan and I watched Netflix.

Now, Monday today: get ready at hotel and head to tricentennial hospital sans boot.

At 10 (I’m still waiting) they’ll shoot me with nuclear dye and then i’ll go to pet scan place to drink the big cups of sugary drinks for cat scan. And then they’ll shoot me full of dye& contrast—somehow they can do nuclear dye and this both at once. I’m not sure how,

At 12 they’ll be finished with with cat scan that shows where cancer is.

At 1, I go back to imaging bone place where they’ll do my scans (they had to wait for my nuclear medicine to circulate). That should take about an hour or more depending if doc running behind.

Hoping to be done by 3. i won’t know anything for a few days so lots of anxiety in meantime. Peace out. Vote Let’s just live thru next week. Hoping for good news!