The Shining

A friend of mine challenged some of us crazy poets to write haikus for a few days. So mine from today— to pick up kinda the Halloween theme and to gross you out (not really. what i’m telling you is truth as i always do). So here goes:

The shining

my husband helps me

into the tub for a bath

I am so humbled.

Why did i think of this? As he put a beach towel around me so I could get in, I told him i wasn’t going to take off my wig til he left bc i didn’t want to look like the rotting corpse in the bath in The Shining. My left breastless side is mottled purple from so many proton treatments. But i guess you could take the shining title to mean Dan is like the shikinah or god’s glory. And of course after bathing you’re all nice and new. Shining. I love language.

Now I’m gonna tell you some not so pretty things so you may want to stop reading, In addition to the other awful parts of cancer you deal with bathroom issues. Enemas you may have to give yourself, depends (the diaper kind), constant UTIs bc well, sex, is a real problem. And besides who is interested when your whole body hurts in new ways? And now i’m losing feeling in my fingertips from chemo.. My handwriting which was never good looks like scribble marks. Dan had to finish filling out a form for me yesterday. Thank goodness for typing. These things make me conscious that my body is slowly slipping away.

It’s metastatic cancer awareness day and I read many heartbreaking stories a day of metastatic women (mostly) wondering if tomorrow is going to be their last and how they’re dealing with their newest indignity or how sad they are that at 30 something they worry they can’t see their kids grow up. I try to encourage when i can—to be a light in my own limited way. Mostly it’s to say “i’m listening. i’m sorry. Life can be so unfair..” And no, it doesn’t help to say “God’s got this”bc some of them have been given weeks to live. In fact last week when a person said “be positive; none of us knows how long we have” the original writer told her to stop bullying her and accused her of being hostile.

But on a positive note, some progress is being made on new drugs. More needs to be done. You can contribute to metastatic cancer research https://mbca.me/3n5fRgl

And the other good news is my ankle healing ok and just have to wear boot 4 more weeks. No exercise or yoga classes or walks. boo! But ll will try to do core exercises. And I can drive! Early voting here I come.

And i’m so grateful for friends and family who take care of me/us. Although some hateful ppl pulled out our political signs in the yard (mean!) while i got chemo in Nashville, good friends brought over a yummy dinner and my dear son-in-law Daniel made us an apple crisp. So I hang onto the good things and the good ppl.

goodnight room/goodnight moon/goodnight cow jumping over the moon. and just goodnight. Sweet dreams. (if you can, after thinking of room 237. in The Shining.)

In synch

Today was the first time I took a walk in almost 3 weeks. I just went around the block with my boot on. I was out of breath but I was afraid I’ll get pneumonia if I stay in bed all the time. And who should I see on my walk, but my friend Fenton? She’s special for many reasons, but one thing she did recently was make a donation to the cancer support community in my name. I was so touched by that. Thank you! The other thing that’s kinda funny; she sprained her ankle the day i broke mine. Anyway I love her to death, and we’re in synch like young women who get menses at same time but we old woman break our bones at same time. haha.

I had another lovely thing happen today. A nice older man with his down syndrome daughter yelled to me, “I like your signs” as he was walking down our boulevard. Made my day.

My kidney scan was a waste of time. My kidneys are fine. But Sarah Cannon says cipro not on protocol so I have to stop my oral chemo drugs til I’m done with cipro; I should be done in a few days. Sheesh. My fever is going down though.

Face Plant

In addition to breaking my ankle last week, a few days afterward, I carried out my blind & deaf dog to pee in the early morning and because she was wiggling to get down, she knocked me off balance and I fell face first on the grass. I examined myself hoping nothing was broken and figured it wasn’t. Thankfully. But at the time i didn’t realize i had a) severely bruised my ribs or 2) broken a rib.

That was just the beginning. The doctor visits/physical problems were never ending. I started running a fever of 102 last Wed. It continued til Sat. Wore me out. Called my sarah cannon doctor and doc here. SC told me to get a covid test. My doc here did urinalysis. Sure enough it was a UTI responding to some weird bacteria called klebesela. I love my doc Doc Clark. He always adds a personal note in texts —“I hope you get better.”

Per Sarah Cannon, I kept the appt at urgent care and got covid test (negative) and then she talked me into a chest x-ray, a strep test and flu test (all neg). I told her i was getting blood work Monday but she wanted me to go to ER since my fever so high. I said no way. I hate ERs. She said she was afraid i might totally destabilize in the middle of the night since my oxygen levels were low. I told her we would think about it (but I’m thinking hell no).

We just went home. Monday was Sarah Cannon—no treatment bc of fever—but they gave me a liter of fluid. They made an appt for me to see urologist! ugh! another appt. We returned home and at 6:30 this morning we went to UT hospital for an ultrasound of my kidneys. My darling, darling daughter, after what was a hard week last week for her, went w/ me w/no complaints about the early hours and wheeled my chair through the UT hospital complex while Dan parked the car. Elizabeth makes everything seem easy. I wish everyone a daughter or son or friend like that. And she brought me my favorite starbucks coffee skinny caramel macchiato! at 6 in the morning.

I was dreading the ultrasound bc it’s such an effort for me to dress, undress with my gimpy lymphadema, proton blasted right side with no strength and now my bruised face-planted side. But they didn’t ask that I undress. I just had to pull up my shirt a bit and apparently they could see kidneys from front.

So to summarize between the broken ankle, bruised right side, inflexible left arm, and, oh yeah, the high uti fevers, the oncologist insisting I get my kidneys checked out and a minor thing like my metastatic cancer, it’s been a face plant kind of week.

Give Cancer the Boot!

Why do i need a boot up to my knee and wheelchair for 5 weeks? The short answer is that I lost my balance last Friday morning and twisted my ankle going down 3 measly steps to the living room. It had been a tough week. I had finally gotten rid of my UTI but i was more nauseated after chemo than normal. Plus the chemo infusions are increasing my hand and feet neuropathy so not as steady.

When I went down on Friday, I heard something snap in my foot and thought “this can’t be good.” I texted Bev, my sister, and she came over and we got into Knoxville Orthopedics. They X-rayed and found mall fracture on my tibia side of my ankle. Foot was swollen and discolored. Bev had a boot and crutches so i used hers since are both about the size. She broke her ankle while taking care of our dying parents 2 years ago so she is the expert and learned to operate under difficult situations—not to mention going back to work soon after she broke hers. i’ve never had a broken bone so his is a first!

We bought a sofa bed last spring so i’m sleeping downstairs near the kitchen. it was a hoot trying to get around Saturday morning before I figured out the stupidity of sleeping upstairs. I got out of bed and slid to the floor (figuring i could push myself up with my “strong” arms and core.) hah! I underestimated how weak i was from my left arm lymphedema the pain in my right foot. i ended up looking like a turtle on my back and I tried every yoga and strength position I knew to right myself. Finally I called Dan who came running. I was bald, had bad breath and had almost wet myself. Oh the indignity! But he scooted me to a place where i could pull myself up and life returned to normal. That’s when we decided i should sleep downstairs in a lower bed with side supports (the sofa arms). Plus i don’t have to go up stairs!

Cancer is a lesson in humility,for sure. Recently I thought how much i enjoy being able to walk. Now i’m not able to do that. Goodbye hair, lashes, breast, eyebrows, dignity, strength, walks. At least the broken ankle is temp. Besides as you progress in life, you learn to survive and sometimes even be contented in all situations. As I told the ortho doc, it could have been worse since I had cancer, and he nodded. After you’re given a metastatic diagnosis, you have just about worst case scenario anyway.

The wonderful cancer support community of east tennessee lent me the awesome wheelchair in case i want to go for a spin in the cool autumn air. i’m trying to keep weight off ankle so it can heal. i want to be back to my walks soon.

I’m continuing to get the nicest notes from Docs all over the world about my JAMA poem “Moving to the Marriage Bed.” Such a blessing.

“In a green room with no curtains near the station” (variation of Cream lyrics “In a White Room” 1969)

A panel meets today
to see if God’s in DNA.
The very thought’s appalling
so many miss their calling.
For those who’re truly wise
it comes as no surprise
that the devil really dwells
at the center of our cells.
From my chapbook “love language”

I wrote that bit of doggerel about 20 years back after reading about a science panel meeting to discuss finding God in DNA. About that time lots was being written in finding God in cells, the brain and so on. People have been trying to find the existence of God since the beginning of time. Why? We’re afraid of death and being purposeless in the universe. I don’t have any answers except my cancer and other cancer friends have made me question everything. All I know is that cancer is a naturally occurring evil.

I’ve been thinking about this because every Monday I am in a waiting room (the green room near the station i.e. death referred to in title) at Sarah Cannon with other metastatic patients waiting on their infusions. I watch to see who has grown thinner, who is sleeping, who is missing, who looks happy. Last Monday was a mixed bag. The normally chipper 70 something guy who resembles Hal Holbrook (he played Mark Twain on stage and was a love interest in tv show “designing women”) was wrapped in a blanket and had a difficult time talking (pain drugs I assumed). When I asked him how he was, he said ok but clearly he was not. He then said he’d had cancer in his bones for 7 years and never felt it til now. Another young guy was waiting in his pet scan results. He was hoping the tumors had shrunk. He said he felt great. The nurses called him back to talk to his doctor. When he got back, he shook his head. “The tumors have grown. The drug isn’t working. I have 6-12 months to live.” What do you say to that other than “I’m sorry.” The good news for one guy was this was his last chemo infusion but will stay on some oral chemo protocol for months? Years? It’s colon cancer.

Since April when I started going to Sarah Cannon several have vaporized or died. One was a 36 yr old mom of 2 who had my Tnbc. She died within 2 years. And this morning I read on a website that a 32 yr old with Young children has terrible cancer in her bones. Evil, evil, evil.

so what do we do? We try to love and support each other as much as we can. I love this poem by Seamus Heaney “The miracle”:

Not the one who takes up his bed and walks
But the ones who have known him all along
And carry him in –

Their shoulders numb, the ache and stoop deeplocked
In their backs, the stretcher handles
Slippery with sweat. And no let up

Until he’s strapped on tight, made tiltable
and raised to the tiled roof, then lowered for healing.
Be mindful of them as they stand and wait

For the burn of the paid out ropes to cool,
Their slight lightheadedness and incredulity
To pass, those who had known him all along.

end

So thank you friends for carrying me all along. And I’ll try to carry others. And here’s a photo of me smiling. I’m supporting the website that helped carry me the past 3 years. The tshirts help to support breast cancer thrivera and notice it’s not pink :). My darling daughter took photos for the website I support (breastconnect.org). She’s a genius photographer to make this old, metastatic, lymphatic thriver look good. Follow her at @ewisemanphoto on Instagram.

“I, a stranger and afraid, in a world I never made” AE Houseman

Okay, so maybe I did help make this world we’re all in. Obviously I haven’t written much lately. With the fires, coronavirus, 9/11, the bungled protests and lives lost, , and my own metastatic diagnosis, I’ve been a bit overwhelmed. A few friends have died and that always saddens me.

With the cancer in my bone, it’s even more real that this is a freaking scary disease. I get a shot once a month to improve my bone quality. It gives me a headache and some muscle aches but it’s all temp.

It’s a weird feeling living with a disease that can never be cured. People claim “I’m cured” of cancer when really it can be lying dormant til some trigger kicks it up. A better way to say it is I’m “NED.” That means there’s no evidence of disease. I’m not there yet but hoping for a reprieval soon.

But aside from the weekly trips to Nashville, I’ve been enjoying life. We finally visited my youngest son and his wife in St. Louis. Good times. They bought a house two years ago and we hadn’t seen it yet.

Also Jama published my poem this week. That made me so happy. https://jamanetwork.com/journals/jama/fullarticle/2770416?guestAccessKey=da6d0b10-eab2-42f7-a93e-6566dfd7bb1b&utm_source=jps&utm_medium=email&utm_campaign=author_alert-jamanetwork&utm_content=author-author_engagement&utm_term=1m

Catch you later. On to yoga.

Queen Deb

“The Real Work,” Standing by Words by Wendell Berry

It may be that when we no longer know what to do
we have come to our real work,
and that when we no longer know which way to go
we have come to our real journey.
The mind that is not baffled is not employed.

the impeded stream is the one that sings.

I like that last line. The impeded stream (with boulders, for example) makes the best sounds. Challenges sometimes make us sing. Thank you Penny Ptschantz for sending.

My work now is to decide on my treatment. Dan says I’m oligometastatic which is an exploratory term describing patients with a limited number of metastatic sites and lesions who might have the potential for a longer disease-free survival period.

I am metastatic but it’s not all bad. My doc in conjunction at Sarah Cannon interviewed by Good Housekeeping recently on metastatic breast cancer. https://www.goodhousekeeping.com/health/wellness/a31668081/metastatic-breast-cancer-facts/

Not crazy about 27% survival rate in 5 years but hoping my lack of metastases will give me more time.

I went for two important scans Monday. A whole body bone scan and a cat scan in Nashville. All in the same morning. Ugh. Got results late Wednesday after I called. They were reluctant to give to me without a doc to go over. I said, “my husband is board certified radiation oncologist,” and they relented. Also I told them I needed to know results to know whether to stay on trial. (Chemo every week and 4 oral Rebastinad pills daily.) According to PA, CAT scan unchanged since June and bone scan still lights up on t-12 but that’s because I got treatment there on July 1 and it’s probably healing from blast.

if scans had shown my cancer had progressed I would try the new fda drug sacrituzimad or some other SOT drug. I’d really like to get the line of lesions on my left shoulder radiated but can’t do that if I’m on trial. Experimental drug doesn’t seem to be wiping them out.

Who knew this could be so tricky? In retrospect I would have made other treatment plans in past, so I don’t want to mess up now. My life hangs in the balance.

I like my new title as oligometastatic. It makes the think I’m royalty haha. (Reminds me of oligarchy. Same root meaning few.) So I’m embracing it.

You may call me Queen Deb. Certainly I’m Queen of Tnbc treatments. Dan doesn’t know anyone who has gotten so many radiations or chemos.

Let’s just hope I’m not royally screwed by making bad decisions.

Thanks for reading and your support, friends!

I’m on left a few years ago (2014) with friend Steph on right.

Atypical!

When I got on the scale this morning and saw that I had lost about 4 pounds over a month (or more)—TRYING— I was elated. I had gotten up to 131 which is high for me but then again I haven’t had steroids for two weeks either—just my 4 oral chemo tabs daily and radiation last week, which went well btw. The doc was delighted over how the plan lined up when I got on the table. 2 sessions and it was over. I felt a tiny bit of pain in my lower back after first day but that was it!

The first sentence of this paragraph & blog begin my list of how I’m not typical. I want to lose weight! Do you know how much cottage cheese, salads and smoothies I’ve eaten? No desserts. Very few chips and I walk when it’s dang hot. Along with the trying to lose weight, I’m hungry all the time despite a pharmacy of drugs.

The second way I’m a bit atypical, is that I love wearing wigs! So much fun. I’d rather have my hair back but it’s great not having to bother w/ washing, styling, etc. And the colors! So many to choose from. But I have to get used to the idea I’ll probably never have hair again

The third way I’m different is that unlike most breast cancer patients, my cancer doesn’t want to resolve. 3 years of this and with each treatment I think I’m cured. Nope.

I’m at Sarah Cannon today for my Monday chemo.

On August 3 I get a full body scan and cat scan. If my cancer is gone I will still have to stay on this regime of chemo because the cancer is gone. Weird, huh? I’m stuck on this forever unless they find a cure or study ends. Or of the scan is bad I’ll go with a standard of care drug that’s been approved by fda but that might kill me bc those are tough on white counts.

Sigh. My husband and Anne, his sister, worked on a difficult Star Wars puzzle of Yoda (whom I slightly resemble now) over weekend. The color changes were so subtle. 1000 pieces! I figure that’s the way it is trying to figure out how to treat this cancer. Lots of hovering. But they finished after persisting! (And may I have the wisdom of a Yoda to make good decisions.)

Last week pretty Kelly Preston (wife of John Travolta) died of breast cancer at 57 after a 2 year struggle. Cancer is no respecter of people—status, fitness, fame. That depressed me (as well as hearing a 37 yr old with 2 toddlers w/ Tnbc here just died after 2 yrs) but I’m resolved to survive and not be a typical triple negative statistic.

Olivia Newton John and Me!

Guess what we have in common? Beside the fact we are both blonde and beautiful (hahaha) we are both stage 4 breast cancer. This photo was from 2002 when she came to Thompson cancer survival center. Notice how big Dan’s smile is?! She has had two time recurrences since then.

Her stage 4 showed up in her back (2018). . Mine is in my spine ;just found out today—I bet my day was worse than yours. My darling sister Bev showed up this morning in the doc’s office so I wouldn’t be alone when I got the news.

So that means (after my doc Grant Clark called the elusive Erika Hamilton at Sarah Cannon) I will get chemo on Monday and the next week I get stereotactic radiation that focuses on zapping the cancer on t-12. I trust my team at Thompson cancer center implicitly. My hubs usually tells me if my news means I’ll be toast but he thinks I can live with this 5-10 more years. However, it all blows my mind. My friend and radiation therapist tells me Dr. Clark is king of stereotactic radiation. Next week I get chemo and the next week he’ll do 3 treatments to my spine. And then I’ll get chemo the next week. Sigh.

I wasn’t sure how to announce to world but figured Olivia Newton John might get yr attention. She’s rich and famous and still is terminal. Like mine, her cancer has returned several times. Tnbc is like cockroaches. Once you see one cell, you know there are others.

So onward.

(In)Side Effects

homage to my hips

BY LUCILLE CLIFTON

these hips are big hips

they need space to

move around in.

they don't fit into little

petty places. these hips

are free hips.

they don't like to be held back.

these hips have never been enslaved,

they go where they want to go

they do what they want to do.

these hips are mighty hips.

these hips are magic hips.

i have known them

to put a spell on a man and

spin him like a top

Photo of Lucille Clifton at end.

My friend Marilyn Kallet reminded me of this poem the other day and the timing was perfect. I was feeling a bit down from my steroid face and body, my breastless left side with its burn and mastectomy scars, the diminishing pleurisy, a new heart problem and limited range of motion from my lymphedema—not to mention my recently diagnosed steroid induced glaucoma. Oh and my bald head. Lovely. The things I used to pride myself on—gone! But I’m more than my body I want to scream but really I am my body, I should have spent more time rejoicing over my body than counting up the flaws.

My daughter Elizabeth and I had a long talk about body image the other day. As a photographer, she says everyone, even the most beautiful among us, hate certain things about their bodies. And she says we only see ourselves in two dimensions (in photos anyway) but the world sees us in 3 dimensions and we are more than our parts.

I am reminded again of the quotation about George Eliot that I put at the beginning of my blog on cancer. Henry James called her one of the ugliest women he’d ever met but within an hour of talking to her you loved her.

On a different matter, my recent cat scan came back with perhaps cancer progression in t-12 In spine, which I’m hoping it’s not. My doc in Knoxville says he’s ordering mri to double check. Yay Dr. Clark! I’ll have radiation to my spine if it looks like cancer. I had an old bike injury at 19 so maybe it’s weird scar/bone tissue. And previous bone scans showed osteoporosis there so it makes since it’s growing since I’m not running or lifting much. Always the optimist.

But no end to this trial. Bald forever I guess. And I’ll try not to feel like an in-valid as I heard someone pronounce invalid. But they did put me in a handicapped room at Hampton inn which has a shower that reminded me of the tiny bathroom I had in China with shower, toilet and a washing machine.

PS love your body. Love yourself. You’ll never be more beautiful than you are now. If you love yourself you might find more love for others.

Driving Through a Plate Glass Window

Losing a parent is something like driving through a plate-glass window. You didn't know it was there until it shattered, and then for years to come you're picking up the pieces -- down to the last glassy splinter.

Saul Bellow.

June would normally be one of the happiest months—gardens, fireflies, weddings and nice weather. But this month begins with riots in the US and abroad over the deaths of George Floyd, Breonna Taylor (an EMT killed by police in her home) and Ahmud Arbery (a jogger) and countless other senseless deaths like the death of Sandra Bland. And, of course, there have been over 100,000 virus deaths in US, 1,812,00 confirmed cases to date and ppl still squabbling about wearing masks. Over 6.3 million people worldwide have tested positive for virus. 376,000 deaths world wide. 433 cases in our little county but fortunately 5 deaths, 22,000 cases in our state, about 350 deaths. Every death diminishes me as John Donne wrote.

I’m saddened by this.

As for riots, I like and respect police, but I’ve read enough accounts to know that there are bad ppl in all professions. And please don’t tell all ppl matter. White ppl have “mattered” unfairly in the west..Just look at the difference between white protestors with big guns in Michigan who were protesting stay at home orders (unharmed) and the protests for George Floyd’s death. We want answers to be quick and easy, but us’n humans are complicated. Plus white instigators being brought in. Ugh

I read about Sandra Bland last year, and I was devastated. She was on her way to a community college teaching job which she was very excited about, and a cop stopped her for a minor traffic violation. The scene escalated and Bland was hauled into prison. (You can hear this transcript on YouTube and other places.) Bland hanged herself 3 days later bc she would have a felony charge and wouldn’t be able to teach at the college. And she was stuck in jail in a conservative Texas area . #blacklivesmatter.

Racism is a cancer in our country.

As for me, I’m having some mixed emotions this week. Besides a bad uti this week before I could get antibiotics, I’m getting my 51st chemo today. Next week I have a week off but have to return to Nashville anyway for cat scan, eye exams and echocardiogram for this study,

But you’re wondering, why did I put that quote at the beginning? I’m getting to it. I read it once in the New Yorker and it stuck with me.

In this time of Coronavirus and cancer (for me) I’ve lost one parent (mom) and my dad probably won’t last much longer. My parents lived long (89& 92) but it’s still a shock. At the end my mom asked me hard questions like “what if I die and the lord is not ready for me?” I said, “oh Mom, if anyone would go to heaven it’s you!”

Because of my own chemo treatment, when my family texts to say, “he’s declining rapidly,” I am in a quandary. Do I stay home or go? I FaceTimed with my dad last week after his massive heart attack. Sisters Bev and Donna have been staying with him, so he’s getting great care at home. . It’s hard to watch a person die—especially one that is so intimately involved in your life. I was there when my mom (at home) breathed her last.

And of course, I’m a little afraid of being around a lot of people bc of the virus.

It’s all so uncertain. I’ve been put on death alert several times so I expect it to happen soon.

A friend asked me how I felt about my dad’s imminent demise. And I said “I just don’t know.” Sad of course. When my brother died in 2003 I cried an ocean and didn’t get over it really for 10 years. I don’t know why, although someone told me that if you multiply the amount of time you knew the person by 20%, you’ll figure out approximately how long you’ll grieve. That was right for me (he was 50).

My mom’s death in October of 2018 affected me too, and I constantly think of her, but not with the same grief for my brother. She was in terrible pain.

My dad has had serious dementia for at least 5 years now and hasn’t recognized me for at least 3-4 yrs, so I felt like I lost him a long time ago, . He’s laboring to breathe and his extremities are turning blue. And not to put too fine a point on this, but nearly 400,000 families have had to watch loved ones take their last breaths with the covid deaths.

I expect I’ll be picking up the shattered pieces from both deaths for years. Each grief taps into all the previous ones. Hence the riots too. People are grieving past murders.

And here’s poem I wrote in 2016 after Terence Crutcher was killed when his car broke down on freeway. Let’s cure this racism cancer with listening to concerns and love/support.

Privilege

Coffee and croissants ease us into morning
as acorns ping our hundred-year-old clay roof

like gunshots reminding me of the impending fall in the divided south where I was born. 

It’s been the hottest summer on record,

I’m old enough to remember Watts ’65, Detroit ’67, Rodney King and Ferguson. The heat will go on.  

Meanwhile the world implodes outside safe, suburban borders as brown bodies fall. Terence Crutcher in Tulsa this time.

NPR reported:  "What he needed was a helping hand. What he got was a bullet In the lung.”

The heat will go on rising in waves off pavement like diatribe rising on airways while nothing changes.

Tamir Rice, Michael Brown, Alton Sterling, Trayvon Martin, Terence Crutcher, Sandra Bland.

So many. “Hands up; don’t shoot.” 

Ping, ping the acorns ring again. My roof holds. 

Hair Today, Gone Tomorrow

This is the day in my chemo regime when I start losing my hair. It’s always a difficult time. I’ve gone bald at least three? Four? times. Hair follicles start to ache and then the hair starts flying when I run my hand through my hair. Sigh. Never imagined this would be a part of my growing old. Bald patches will appear and then it will all fall out. I was just looking at my smooth legs too. Bye bye body hair. Eyelashes start falling into my eyes. Thank goodness I had my eyebrows tattooed nearly two years ago.

It’s also Mother’s Day which makes me a little sad. My mom lived until 89 but the last few years were hard. She was in pain, and we didn’t know why. Her cancer wasn’t diagnosed until the very end. I wish I had known and I could have commiserated with her but even her gerontologist didn’t run the proper tests.

But at the same time, my children and their spouses make this time of year less painful. I’m so proud to be their mom and Mimi to my grandkids.

Joni Mitchell was right, though. You don’t know what you’ve got til it’s gone so I’m trying to appreciate my time with my family. Life is nasty, brutish and short (in a war and this is a war) as Hobbes famously said.

I have week off from chemo this week. Looks like the line of lesions along my neck lymph nodes are shrinking so I’m hoping this oral chemo/infused chemo is working. I don’t return to Sarah Cannon til next Monday May 18. So I don’t want to end on too negative a thought. Here’s a poem my friend Marilyn Kallet reminded me of. Raymond carver was a great writer of short stories and poems and died young from cancer. But he was appreciative of the time and love he had over 10’years after his diagnosis. I am too, it’s been 3 years of love.

Wash, Rinse, Repeat

Swollen, steroid face is back. And wait, who is that masked woman holding my hand? The Virgin Mary? Actually she belonged to my father-in-law Hank who passed in 2013. And yes she’s wearing a mask in sympathy with the 3,000,000 who have gotten the Coronavirus and the 200,000 + who have died (worldwide). (And in the US over a million cases with death tolls approaching 60,000 and cdc says that’s a low count.)

Yesterday, before my visit to Sarah Cannon, my 5-year-old granddaughter Madeline called and asked to interview me as a “famous” poet. That cracked me up. But she had an old copy of my chapbook “Heart Language,” so I agreed. Hers was a school project and was coming on the heels of one of my poems being accepted by JAMA. But it made my day. She read my poem “everyone loves blue herons” to her class with big words like ascends and massive.

But back to treatment day, Dan was not allowed to come into the building with me, so he went back to the hotel. My blood work looked fine and after a few hours they started infusion. They shot Benadryl into my port, and immediately, I felt it in my jaws. Then my pelvic floor! weird. I also got steroids and pepsid. Suddenly I started getting restless legs so I asked Sally my nurse if they could cut down the Benadryl bc it was very uncomfortable. It had happened last week but I thought it was an aberration.

At about 12:30 we were finished and headed back to Knoxville. We do it again next Monday. The famous poet is signing off with all kinds of gorgeous peonies from her garden.

Rocky Balboa Scaperoth

If I was ceramic I'd be kintsukuroi

Pottery which has been knocked

Dropped, broken into shards then

Mended with gold or silver lacquer

A delicate meander of liquid gold

Flowing into the breach.

“Axiology” by Anne Carson

I’ve been spending the week getting ready for this phase of treatment. My arm has been wrapped for 3 days with pt massage for my lymphedema, and it’s gone down 2 cm. Yay. I still have to wear my compression sleeve as much as possible. I tend to rip/pull it off just as I get into bed. It still feels heavy when I walk but at least I can fit into clothes. And the other good news is my pleurisy is feeling much better and belly no longer swollen from fluid in my lungs.

In an attempt to get into shape for new trial, I did 4 yoga classes, 2 exercise classes, and tried to walk every day. I also ate a wide variety of food. Too many carbs but that happens when you’re eating fruits and veggies. It’s probably a little better to weigh a bit more when you have cancer.

We leave Sunday night for the holy city of Nashville where they have gotten us hotel rooms for Sunday and Monday nights. They will do labs on Monday and start infusion on Tues. at 7 AM. The phase one clincal trial is rebastinib.

They said I could bring my dog as long she is an emotional support animal. Okay. She is. I don’t have to worry about her while we’re gone although daughter Elizabeth generously volunteered to keep her.

Dan will need a playmate while I”m hooked to chemo. She’ll be his emotional support animal.

On Friday, Krista from Sarah Cannon said, “We have your drug all ready. We’re excited about you being here.” That made me feel good. I’m probably only the 6th or so person to undergo this trial.

“Take that, Cancer! I”m getting rid of you once and for all.”

Tornado or It’s a Wrap

I woke up to the sound of rain and thunder storms on Easter Sunday night. I also woke up because my left arm was aching from lymphedema. Suddenly the pleurisy pain in my lungs--apt word pleurisy since je pleur is “I’m crying”—was less than the pain in my left arm. I was grateful I had some lymphedema appts this week.

I also woke up to a tornado of concerns about whether I was making the right decision about my cancer esp. during time of Coronavirus. A new spot has popped up on my chest since I last went to Nashville. I I could have my shoulder radiated right away and get rid of these spots, but then risk any invisible cells escaping. My kind radiation doc Grant Clark reiterated yesterday that I should try the clinical trial, and if it didn’t work, radiation was still an option.

Still I have things to weigh. This drug is no guarantee, and I’ll have to go to Nashville for many weeks. Chemo again each week which will stir up the radiation recall which has done a number on my range of motion on my left. Of course, I’m grateful to be in trial, but just going to Nashville is a risk for exposure esp. since I have to stay at a hotel.

I know everyone has worries, so I’m trying not to whine too much. But the various aches and pains sometimes get to me especially as I try to exercise, do yoga to work on my badly damaged range of motion from the left mastectomy & latissimus flap and proton treatment. My body will never go back to normal. Besides the missing breast, the skin on my chest is destroyed. I can’t have reconstruction bc I’ve had too much radiation. At the age of 27 I had stopped sunbathing to protect my skin. So much for that. My range of motion on left is pitiful.

I know we have to learn to give things up to be better, humble people. But it still causes me grief on some days.

Plus I have such a history with this cancer that PTSD recurs.

For example today as Missy Cross wrapped my arm for lymphedema (a photo will follow), I thought of the last time I was wrapped for a swollen arm. Dan had just gotten out of hospital from gangrenous gallbladder, and I got a phone call during my appt. that my mother was dying and that I needed to go to North Carolina. I felt sad today in particular. Plus it felt like Missy was breaking my arm as she pushed my arms into positions that a normal person can do easily. The pain exhausts me.

Fortunately it’s only some days I feel this way, and like a tornado, my worries are soon gone. Then I’ll work on rebuilding again. Thank you to the essential workers like the PTs, doctors, nurses, friends, and family who help me rebuild.

“Grief and resilience live together,” Michelle Obama reminds me in “Becoming.” I try to keep that in mind.

It’s a Go!

I am starting treatment at Sarah Cannon on April 21. I got official word today I will start the clinical trial April 21.

Dan has to work Wednesday-Friday next week so I can’t start before then,

This is good news bc any more radiation on my left side would have really hurt my already damaged range of motion. I’ll be much healthier when I start too bc of the delay from previous radiation,

Thanks all! Let’s hope this treatment is not merely palliative, but is curative.

not sick enough

Where I am now. Sarah Cannon called and said the drug company is hammering them with questions so treatment not approved yet. Docs at Sarah Cannon have approved but not the “sponsor.”

For them, they’d truly love someone with more extensive metastatic disease. The drug is designed for palliative care, not curative. But I’m hoping that for me with this little bit of disease on my left shoulder will be cured. But I am being categorized as metastatic,

I get it. They will spend tons of money on me and I won’t be the ideal candidate to sell their new drug. I am grateful of course if they enroll me.

Its a weird place to be; it’s a cancer that grows quickly but so far it hasn’t invaded major organs because we’re staying on top of it. But bc we’re staying on top of it, clincal trials is hesitant to take me. Catch-22. I’m trying desperately to stop it from spreading…three years of this!

They called yesterday asking about the half life of the radiation I’ve gotten. I handed phone to Dan who explained there was no “half life” involved in my radiation. Thank goodness I’m married to radiation oncologist,

Tentatively they’ve got me scheduled for next Wednesday April 15. They’ll pay for hotel on Tuesday night, so I guess treatment is early.😞🤔

It’s Door Number One

It’s the door with the clincal trial! After two days of testing (exhausting) at Sarah Cannon with ekg, an echocardiogram, a CAT scan, 2 eye exams, they have decided to put me on the clincal trial. It will probably begin in next week or so. (Dan was amazing as he waited in doc offices for hours with me. He said it was fine as he read the Moth essays. They’re very good btw. )

I’ll be required to make weekly trips to Nashville, More chemo (taxotere) for eight weeks with oral chemo Rebastinid daily. So that will bring totals to 53+ chemos. By then the skin lesions should be stabilized, and they will scan, I will then have another 8 weeks to see if they disappear. The CAT scan showed I also have a weird module in my lung that they think may go away with the drugs. I still have pleurisy in left lung which can be painful. Dan says it’s probably from the proton therapy July-October.

They also saw something that looked like some sclerosis of my spine (and they use the bone chilling phrase—apt phrase—possible metastasis of spine) but Dan doesn’t think it’s cancer; he says spinal mets look a definite way. Useful to be married to an oncologist. I think it’s from old injury of falling off bike or something and old age. It has been mentioned before in former pet scans,

Dan said my CAT scan actually looked good for someone my age. Very little joint damage, no cysts here and there. So there’s that. Cancer gone from lymphs under right arm. So thank you Dr. Clark, Jordan, Taryn, Brittany, Patti, Wilma and other Brittany and all involved at Thompson. Now the bits of cancer remaining are on my left shoulder in the skin. Surely they can get that!

Onto the next section of this triple negative, three-year journey. (And yes. I’ve tried everything. I even had a complete clincal response in July 2017. Weird).

Nature, Red In Tooth and Claw

The phrase above is from Tennyson’s “In Memoriam” (19th century poem) after his good friend Hallam died at the age of 22 of brain hemorrhage. This phrase seems pertinent now as I ponder how diseases work. (Btw Tennyson also used the phrase “better to have loved and lost than never to have loved at all” in this poem.)

Personally I’m not particularly afraid of the coronavirus for myself because I live with the specter of death all the time. (Plus I am a product of privilege, so compared to lots of ppl, I have many many advantages over others.) However I’m afraid for all those who will die in this plague and leave behind loved ones. I’m also afraid for how the already economically disadvantaged will suffer because of lack of wages and afraid for those homeless and/or alone. The uninsured. I pray for those.

I just got a phone call from nameless person who was ranting about how this is God’s way of calling lots of ppl to him. (She had been reading Revelation and about pestilence that was to come from China? How did she know that from that text?) I let her go on, but I said “ I don’t believe that. Like I don’t believe my cancer is a punishment, or AIDs was a punishment.” She said “it’s not punishment—it’s God’s way of calling ppl to him.” I said, “yeah but lots of ppl will die and it will happen even to those who are faithful to God.” I should have mentioned how Jesus called ppl to him through his love Or 1 John in which author says God is love and perfect love casts out fear. (1 John 4:7; 1 John 4:18).

Sheesh. I don’t pretend to know how it all works, but I don’t believe in a God of punishment.

What I do know as a verifiable fact is that our bodies are susceptible to disease, aging, physics, gunshot wounds, and all that. All of us. And so I’m doing all I can to keep my social distance and follow guidelines so others don’t get sick.

I’ve also been thinking about the poem “Design” by Robert Frost. I’ll post below. As Tennyson noted, nature is not always beautiful and kind. It’s often brutal. When I gave up asking God “Why me?” ages ago, I began to breathe a sigh of relief. A better question is “Why not me?”

Here’s Frost’s poem. For those of you who hate parsing poetry, it’s about a white spider that alights on a white flower called the heal-all (ironic). The white spider then traps a moth that is attracted by the white color. The last lines ask the important questions.

Design

I found a dimpled spider, fat and white,
On a white heal-all, holding up a moth
Like a white piece of rigid satin cloth--
Assorted characters of death and blight
Mixed ready to begin the morning right,
Like the ingredients of a witches' broth--
A snow-drop spider, a flower like a froth,
And dead wings carried like a paper kite.

What had that flower to do with being white,
The wayside blue and innocent heal-all?
What brought the kindred spider to that height,
Then steered the white moth thither in the night?
What but design of darkness to appall?--
If design govern in a thing so small.