Update and I do mean Up

if i can. get my hand from stop shaking I will type this. I’m home from hospital and even slept in my own bed. After a 15 hour er wait, and a week in hospital , I’m still weak but as my dear radiation oncologist says “ ppl underestimate how much a hospital stay of 6-7 days takes out of you.” ! have oxygen but with a thorancentesis (lung tapped for fluid) i’m doing better. that was done in my room thank goodness.

Some of the nurses were great; some were not. Docs gave me lasix although i begged them not to. Dan sad they had to bc lungs wee crackling with fluid. I kept needing to use the potty and the nurses acted disgusted with me when sessions were half an hour apart. Not my fault. I was too weak to go by myself. I remained incontinent fr several days even the night i got home. lots of sheet changes.

But one nurse was great and i called her my new bff. the good news is i’m having home health (a nurse) & Pt come to my house beginning next week.

Kudos to all who brought food and flowers and didn’t stay. Or had kind words and cards-/prayers I can’t list them all bc of neuropathy. And thank you for taking care of Dan with food,

special thanks to busy daughter who coordinated calls and acted as a sentry. When you are very sickl you can be naked, going to potapotty or sleeping.. And you can wear me out from 5 min convo.

And happy that Dr Gharavi back.He’s so smart! and kind!!

More to say but wanted to say thank you to ALL who helped!! Bev with sheet changing: flossie with mysteries. Grands sent “read” slippers. judith with cane. got up by myself today and walked slowly down stairs. a first.. progress Love you all!

Don’t Cry for Me Argentina and Winter Solstice

My brilliant friend Elaine posted this on her facebook feed:

“As we approach the night of Yalda (21st), let's spare a thought for the brave Iranians who are fighting oppression. Shab-e-Yalda: “shab” meaning night, and “yalda” meaning birth or light. It is a holiday celebrated by millions of people from Iran to Azerbaijan to the U.S., on Dec. 21, the winter solstice. Christmas and Yalda are celebrated just a few days apart, and the celebrations hold similar traditions and values: family, love, resilience, rebirth and a triumph of light over dark. Originating in the pre-Zoroastrian tradition of worship of Mithra, the God of Sun, but popularized by Zoroastrians, Yalda, also referred to as Chelleh, celebrates the sunrise after the longest night of the year. Ancient Persians believed that evil forces were strongest on the longest and darkest night of the year. People stayed up all night, telling stories and eating watermelon and pomegranate, in addition to dried fruit, in anticipation of the sun rising..”

I love the darkness of winter.

As for my journey the past month has been filled with abdominal port removal, infections, weeks of Iv antibiotics. I kept asking myself am I dying yet? especially since my absolute neutrophils (white counts from bone marrow) were so low that they couldn’t treat. I got a brain mri (clear) and a pet scan that showed no new cancer but a hot spot on rib that radiologist said was a new fracture—I felt it. I also went to wound care ctr in Oakridge and doc looked at all my wounds—2 from radiation on my backone under left arm, no healing right chest where they took out chest port with pseudomonas. Last week 9 doc appts and about 11 arm sticks. I’ll be glad when I get my port.

Yesterday I had a long chemo 9;30-3:30. They couldn’t get a vein at first and after my 7th jab, Lindsey. got a good vein and we kept it in for port insertion today and IV drugs. I’m getting something called a pas port which is good according to Dr. Gharavi (so glad he’s coming back!). He says: “At Penn, it’s all they ever used to avoid the chest. It must not be cost effective, but it’s so much more comfortable.”

Sister Bev dropped by bearing gifts and helping me up and down. I was pretty worn out.She’s such a love.

Christmas will be a houseful—David’s gang, Elizabeth’s tribe and Dans tribe of sis Anne and her hubs Paul.

Last week Matt and Audrey came with gifts and a violin Matt assembled from a 3d printer, modeled after a stratavarius. He plays it too! picture below.

I’m on steroids today and ready for my later minor surgery. Wound care first in Oakridge. And don’t cry for me Argentina, This is my one of 2 happy days a month (chemo drugs). Hope you have a great holiday season this year!

Forgive typos it was 5 am when I started, Will fix later. .

whack a mole

Well, it’s been awhile. Much has happened.

My new port got infected/—on a Wednesday after chemo. I started running a fever and Dan quickly called the doc. I got sicker by the minute. Was grateful that the doctor saw me right away. He couldn't decide whether to take out the new port or put me on antibiotics. He decided to give me the antibiotics which were levaquin and bactrim and he told me to load up on them that night. It was good he did that because I got progressively sicker. In the middle of the night I was walking into walls and couldn't stay steady on my feet probably because I was septic. After a few days I felt better and now I'm hoping that port will continue to work without infection.

I was so grateful for my friend David who came over on Thursday to check on me. Dan was at work and couldn't stay home so David brought cookies and offered to walk my dog. He's a vet so I felt comfortable turning Dude over to him. Other people helped as well—my sister Bev brought the saltines I was craving and my friend Polly brought me a hot dog. Friend Marcia brought flowers and Doritos.  (fyi I much prefer savory things—my nausea is acute when I think of sweet things.) Another friend dropped off a beautiful orchid. All of these things make me happy and I hope will boost my immune system. I am so grateful for my friends.

And this blog is called whack a mole because i just finished radiation to my back and now skin mets have appeared on my front above previous radiation. I saw them yesterday as i was dressing. Dan looked at em too and said yep they look like previous bumps. That area cannot be radiated again so i’m going to hope my chemo gets them. I seem to get rid of one problem and another pops up—not surprising considering 1cm of cancer has a billion cells

Honestly I’m a bit discouraged, but so many things to be grateful for so I will just list a few.

I am grateful to be able to walk without getting out of breath. When I had the infection, and in fact before the infection, I would only walk five steps and be winded. The other day I took a walk around the block which pleased me to make progress.

A friend gave me a cutting from her plant which was originally in Ram Dasses’ dorm room when he attended some conference. . If you don't know who Ram Dass is look him up.He was an enlightened teacher-- he has passed however . I am grateful for that and will think positive thoughts whenever I see the plant.

I'm also grateful that my medicine helps to control my nausea so that I have been eating regular meals. But I will be back to chemo on Tuesday and this drug is relentless in side effects. But I am not ready to give up. Nevertheless, I'm at the point where I understand people who give up and say no more treatments. I felt like a goner a few weeks ago. The septic infection really zapped me.I have lost a little bit of myself each year. I had trouble putting on my earrings yesterday because of my neuropathy, and it is very difficult for me to dress myself although most days I manage. Dan has been a great helper. I am dictating this blog because typing is too hard on my fingertips. I don't know what else will go in the future. I hope things will just stay stable. Dan told me something interesting—that triple negative breast cancer benefits from beta blockers. Drugs that control our breathing, heart rate, and so on so feel less anxious. I told Dan “bring on the drugs then.” I’m trying to keep stress low.

Thanksgiving on Thursday so it's appropriate to remember all the things that are good in my life. And my sweet daughter and a friend are gonna clean my house tomorrow which will be a real treat. I haven't had a cleaner in a very long time. My sil and family members are taking care of the food—bless em.

I hope you all have a great Thanksgiving and I'll keep you posted on my cancer. I'm hoping the Dec pet scan and brain mri will show an absence of cancer in my organs, brain or bones because that feels like the beginning of the end

PS Thank you Amy Easterly for the quotation below.

I Will Survive

That song was playing in background when they did my second trans abdominal port on Monday Octobrr 9. The other song that played was “staying alive.” hah! The staff kept saying we don’t often do these procedures— which didn’t instill confidence. But don’t know if music was random or what…

Mostly different crew. But best of all they got my iv for anesthesia in one stick. My arm is black & blue. At home I woke up before procedure with terrible, terrible UTI so i started downing antibiotics. By 8, I wasn’t peeing in pain every 5 minutes or less—even brought a depends which I didn’t need.The antibiotics kicked in so I was just fine on operating table.

Whole procedure lasted 2 hours, but I was there from 8 to 12:30. They ran a catheter down my femoral groin area to insert dye (i think). catherized my femoral artery which made it hard to walk for a day or two. And then they ran tube from the abdomen to my back to my vena cava. I was mostly awake (fentanyl and versaed) and don’t prefer being awake but could tell them if I felt pain. i spoke up several times but pain wasn’t bad. I left feeling woozy tho and they suggested I lay flat in my back to make sure my femoral artery stopped bleeding. After an hour they brought me a wheel chair bc i had to rush off to radiology, (my 6th of 20). Leg still weak and hurt like hell. . Dan pushed me in wheel chair to radiology after we parked. What a man!

Had chemo yesterday. Still woozy. I like my new. doc—Dr. Fung. He wants me to do a pet scan in a few weeks and another MRI of brain since this this cancer tends to go to the brain. Keeping trodelvy dose at 85% to see if my neck skin mets melt away with chemo and radiation.

So I’m singing with Gloria Gaynor. The lines in bold are most meaningful to me. regarding other photos, I couldn’t get all the black and blue spots on arm. Thanks always for your support in so many ways. 😘💕💕💕

At first I was afraid, I was petrified
Kept thinking I could never live without you by my side
But then I spent so many nights thinking how you did me wrong
And I grew strong
And I learned how to get along
And so you're back
From outer space
I just walked in to find you here with that sad look upon your face
I should have changed that stupid lock, I should have made you leave your key
If I'd known for just one second you'd be back to bother me

Go on now, go, walk out the door
Just turn around now
'Cause you're not welcome anymore
Weren't you the one who tried to hurt me with goodbye?
You think I'd crumble?
You think I'd lay down and die?

Oh no, not I, I will survive
Oh, as long as I know how to love, I know I'll stay alive
I've got all my life to live
And I've got all my love to give and I'll survive
I will survive, hey, hey

It took all the strength I had not to fall apart
Kept trying hard to mend the pieces of my broken heart
And I spent oh-so many nights just feeling sorry for myself
I used to cry
But now I hold my head up high and you see me
Somebody new
I'm not that chained-up little person still in love with you
And so you felt like dropping in and just expect me to be free
Well, now I'm saving all my lovin' for someone who's loving me

Go on now, go, walk out the door
Just turn around now
'Cause you're not welcome anymore
Weren't you the one who tried to break me with goodbye?
You think I'd crumble?
You think I'd lay down and die?

Oh no, not I, I will survive
Oh, as long as I know At first I was afraid, I was petrified
Kept thinking I could never live without you by my side
But then I spent so many nights thinking how you did me wrong
And I grew strong
And I learned how to get along
And so you're back
From outer space
I just walked in to find you here with that sad look upon your face
I should have changed that stupid lock, I should have made you leave your key
If I'd known for just one second you'd be back to bother me

Go on now, go, walk out the door
Just turn around now
'Cause you're not welcome anymore
Weren't you the one who tried to hurt me with goodbye?
You think I'd crumble?
You think I'd lay down and die?

Oh no, not I, I will survive
Oh, as long as I know how to love, I know I'll stay alive
I've got all my life to live
And I've got all my love to give and I'll survive
I will survive, hey, hey

It took all the strength I had not to fall apart
Kept trying hard to mend the pieces of my broken heart
And I spent oh-so many nights just feeling sorry for myself
I used to cry
But now I hold my head up high and you see me
Somebody new
I'm not that chained-up little person still in love with you
And so you felt like dropping in and just expect me to be free
Well, now I'm saving all my lovin' for someone who's loving me

Go on now, go, walk out the door
Just turn around now
'Cause you're not welcome anymore
Weren't you the one who tried to break me with goodbye?
You think I'd crumble?
You think I'd lay down and die?

Oh no, not I, I will survive
Oh, as long as I know how to love, I know I'll stay alive
I've got all my life to live
And I've got all my love to give and I'll survive
I will survive

Oh
Go on now, go, walk out the door
Just turn around now
'Cause you're not welcome anymore
Weren't you the one who tried to break me with goodbye?
You think I'd crumble?
You think I'd lay down and die?

Oh no, not I, I will survive
Oh, as long as I know how to love, I know I'll stay alive

Source: LyricFind

Bald and Sleepness in Knoxvillle, Fire Ants, A Lovely Wedding and Miracles

I’ve been meaning to write but my neuropathy makes it hard!

To get to the miracles. In faith, we drove through hurricane Ian to get to wedding in NC. Fortunately the rain had eased up but was only bad around piedmont area. Elizabeth drove too with her littles: 5 mo old and 4.. Brave woman!

The wedding was beautiful. Loved seeing my family. But one minor hitch: Prior to service, Dan got fire ant bites that later oozed!—they crawled up hs pant level and shoes. Fortunately, niece Kelly (thank you!) saw them on his pants and started brushing them away. Dan was standing on ant hill. They made it to thigh—but no family jewels. And we’ve both been sleepless bc of bug bites!

The big miracle happened on. our way back.,When we got jhome, imy bag with cancer drugs was missing.

I called hotel, iand they had it locked away. I asked if sister Dionne could pick it up. I told her I just needed my drugs, so I left it at that. But Dan and I still bummed.

The next day with so many missing things I felt down. Donna texted me again about bag. I told her just hold it i’d be in town in 10 days. I also told her I was feeling overwhelmed and so i appreciated her generosity..

Here’s the miracle:Yesterday Donna spoke with new hire from Knoxville. She says she’d bring me bag bc she was going home that day. By 7 pm the bag was on my door stoop. wow!

I thanked Donna but she said God arranged it but ii said you two were vessels/hands of God—you got it for me!

The other miracle (planned() is that I’m starting radiation today bc skin (mets) bumps that started growing practically overnight had gotten larger.. I was getting freaked out bc treatment wasn’t going to start intel next week after biopsy on friday—that would be ten or more days later before they got pathology reports. If i have a low level expression of her2nu I can try another drug since trodelvy seems to losing steam. The drug is enhertu. Docs broke into standing ovation as researcher presented the data. But I’ll have to wait on biopsy for that chemo switch.

And I’m missing my oncologist who is on medical leave til 2023. I had to choose a new doc who doesn’t know me at all. They may know Dan, however.

Busy week 1) biopsy tomorrow. (thurs) 2) surgical incision of new port on friday bc last one was infected & i was in hospital 6 days. The poor nurses are having a rough time getting veins to stick for infusion. After 3-5 tries i pointed to a vein and said “try this one.” Although nurse was skeptical bc it looked like a spider vein but it worked! Chemo steroid hangover today so I’ll get a lot done. And then radiation at 2:30.

Saw Dr. Kate Bowler Sunday night at Church street methodist. I have two of her books. check her out. she’s imiresduve abs stage 4 colon cancer which is now dormant. Check her out at this link. she writes about the prosperity gospel allacies. Joel Osteen all over that—not to mentionv, the cults of positivity. She even addressed such things as “putting it out to the universe” to get answers for something to nanifest. Some of my most devout breast cancer friends have succumbed to disease. now katie Couric has it. talk about positivity. I hope they got it early but even test dues t guarantee longevity.

https://www.churchstreetumc.org/kate-bowler-at-church-street-umc/

Hace a great day friends! Thanks for reading!

three sisters—i’m in middle with scandalous wig.

Mother of bride (and my sister)! and bride.

how do you ruin…

I asked this question about the oatmeal I got in the hospital 5 years ago. Yes. I was in the same hospital recently. The food hasn’t improved too much—too bland, no salt. But I ate some of it bc I was flat on my back for 6 days hooked up to antibiotics. Port was infected with bacterial infection. i was running a fever for 4 days prior to admittance. I should have known I was sick bc once again I was too weak to get out of bath. I called Dan but he wasn’t around. I struggled to get out for 15 minutes and finally made it.

With that frustration behind me, I finally called my doc’s office and told them I wasn’t going to ER & I thought maybe my port was infected. Since the er option was out ( I hate them), then my doc arranged for me to have a direct admit without going to ER. yay! another lesson: be adamant but polite about your health and what you need. You know your body best!

I was in the hospital Tues-Sunday. Friends and family sent beautiful flowers which I so appreciated! But I didn’t want visitors bc 1) I was tired and 2) I have unpredictable GI issues and was hooked to IV bag most of the time. Dan,of course,was welcome and sis Bev who’s oncology nurse. Bev brought me a stack of new magazines which helped. (But again I found I was too tired to read much.)

Last Wednesday I had surgery to remove my port and they couldn’t find a useful vein so they did anesthesia line through my foot which then was the port they used for later antibiotics and blood draws. Ivs in foot not terribly hurtful but hurt more than other places. Doc said veins close to bone hurt more. Not sure why-/I need to ask Dr. google.

They can’t put another port in until my blood cultures clear. And my skin on chest is ruined by radiation and protons and my clinical trial drugs so they’ll have to find new area—side? Dan says my chest reminds him of the burn scars he saw in books of people getting cobalt to skin//chest on the 1940s before they did away with bad radiation.

I’ll find out Friday when they can possibly do surgery. I loved my port bc IV peripheral infusion sucks and my veins are collapsing from so many years of chemo, age, dehydration.

Dan, bless him, has been enormously helpful. He brought me starbucks when he could. Also he spent 2-3 uncomfortable nights with me in hospital room. I’m very lucky.

Yesterday I was back at chemo (outpatient). yay for steroids which woke me up at 1 this morning but they make me all speedy and happy. Last week when I was recovering at home, I got rather despondent (my iron levels and magnesium low). Fortunately I was infused with magnesium along with my reg premeds of steroids, précid, zophran for nausea, in addiction to reg chemo drug. A long day 9:30-2:30 for chemo,

However my iron is back up to 9 instead of 8. I’ve been eating more steaks and spinach salads. It won’t cure my chemo iron deficiency, but any little bit helps since I feel like not moving from couch.

I will get more magnesium IV infusion next week which is good bc calf on right leg just snapped unexpectedly. Hurt to walk for 2 days and that’s one of the things that depressed me. Can’t go for walk, can’t go in hot tub (open wound) and the list goes on.Oh and not being able to be eating certain foods and drinking wine. Very basic things—like being able to hold my 4 mo. old baby for long although Elizabeth places her in the crook of my arm when she sleeps or if she needs a bottle.

And speaking of kids my dil is in Tennessee with 2 grands visiting which cheers me up tremendously .

My kids are having great career news as they move up in rank and I’m grateful not to have to worry about them. My parenting mantra was if you do a good job, you’ll have less worries later so no screaming or hitting them.

Finally advice from one who has ups and downs with terminal illness.

DON’t ASK: are you better now? (no i’ll never get better unless they find miracle drug) And even if one thing improves , I have more to worry about with side effects. It’s exhausting.

DO ASk: how are you? easier to answer.

That’s all folks. steroids made me do it!

Anniversary

Forty four years ago, Dan and I got married on in Winston Salem on a hot, clear day. My late brother officiated in a small ceremony in a nearby Baptist church (about 50? ppl) and my mom made lasagna. Our reception was held in my parents’ kitchen with my precious family and friends joining us. After opening our presents and eating a beautiful wedding cake, upon which my dad placed a gardenia,, we loaded up my 72 nova and drove to Dallas in a car so hot the champagne bottle packed away exploded on out marriage license. At that time I would have never dreamed i would become a lit doc or that Dan would become an oncology doc.And neither one could have imagined that the supreme court would be going rogue at this time. Or that my brother would be killed in 2003.

Now 11 houses, 3 kids, 5 grands, 3 dogs, published poetry and shared cancer, here we are. it’s been a good run.

Today i’m melting from the heat and Tuesday’s chemo. Dan and i will go out to dinner tonight and that small thing will feel like a miracle.

I’m sharing this lovely poem that says it all (thank you Donna Doyle) .

Summer Kitchen  

In June's high light she stood at the sink

With a glass of wine,

And listened for the bobolink,

And crushed garlic in late sunshine. 

I watched her cooking, from my chair.

She pressed her lips

Together, reached for kitchenware,

And tasted sauce from her fingertips.

"It's ready now. Come on," she said.

 "You light the candle."

We ate, and talked, and went to bed,

And slept. It was a miracle. 

Donald Hall

from The Painted Bed

Dream of Frankenstein and other Wonders

“Life, although it may only be an accumulation of anguish, is dear to me, and I will defend it.”

Mary Shelley

My sentiments exactly, Mary. A few years ago I won first prize for a poem called “Dream of Frankenstein.” I had found the inspiration for it in an old journal entry about a dream of Frankenstein. And, as many know, Frankenstein is the doctor who created the monster, but I refer to a popular culture reference version with his name.

Mary Shelley wrote Frankenstein in the summer of 1816. (I’m going to call her Mary so you don’t confuse her w/ hubs Shelley.) Quite young. 19? She had been summering in rainy Geneva, Switzerland after visiting the real alchemist Frankenstein’s castle in Germany. In Geneva, she was with her hubs Percy Shelley, step-sister Claire Claremont, John William Polidori, and Lord Byron when they challenged each other one rainy night to write a great “gothic” story. Mary won, of course, and the rest is history. By way of backstory, she had miscarried Shelley’s baby in 1815 when they weren’t married. She wrote about the miscarriage in her journal. She was married by 1816 when Shelley’s first wife committed suicide. Besides Mary’s own mother dying when she was less than a month old, daughter Mary miscarried several times after 1815 but eventually had a son. But she lost her husband who drowned in a boating accident in 1822. She understood sorrow. And joy, loss and beauty.

Back to my story, I had only had my cancer about 2 years at that point (diagnosis 2017) when I wrote the poem. The journal entry was earlier.

Dream of Frankenstein 2014

How do I explain a dream

from an old journal entry

I picked up and read the other day?

They said he’d been reformed

but one night in particular

I knew he’d go crazy. Darkness settled in.

We locked all the doors and windows.

Still, I felt dread

with my children gathered around me.

Others reassured: “He’ll be fine.”

I knew better

Is this dream about my father,

now in dementia’s emptiness,

who once took us to see Frankenstein

at the drive-in. How I’ve loved

horror movies since?

How he’d shout “I’ll cut the blood

out of you” even after church?

Or perhaps it’s about my toddler grandson,

born missing his corpus callosum ,

with a diagnosis he could someday

be violent. Am I conflating him

with Mary Shelley’s dead, dreambaby

she described in her journal

and then channeled deep grief

like mine to her famous novel?

Maybe, and stranger still,

could it be prescience about the cancer

that has now spread through my house--

the bald head, the scars, the terror?*

I’ve been thinking about how life can be so tragic and beautiful at the same time. Two friends are dying of cancer as I write, but summer flowers are busting out all over. And i have a beautiful new granddaughter. And on a tough day when I visited the bedside of a dear friend who is no longer lucid (melanoma of the eye metastized) a prescient friend brought dinner although she did not know I was having a bad day. Such beauty in her actions. And later i visited with River my granddaughter. See photo below.

Yesterday, I had CT scan. Looks like cancer stable. No progression. And also had chemo. My doc called me with the CT results as i was driving home and said it was a good report. Still fluid in left lung (not around heart as doc said two weeks ago—whew!) and my ribs are not healing correctly (Dan says they’re piling up on one another & that’s why I’m having so much pain.) I kinda look like Frankenstein’s monster all hunched over. Not sure what can be done about it. But like Mary I still love my life. And I’m not sure why some of us make it in cancer land and some do not: Tis a mystery. But love continues and I’m grateful for friends, family, beauty, pets and so many things. Thanks for thinking of me. (PLEASE don’t ask me when i’ll be done with chemo. Never. I’ve said it over and over but…)

Beach week soon. No chemo that week and it’s a miracle bc I didn’t plan it that way. And it was the only week the victorian house we’ll stay in was available all summer. I will see some family on way. I’ve packed my beach bag with two suits, towels, and sunscreen. That’s all I need right? All kids and grands coming too! Again the timing was perfect for all. Miracles and wonders.

Heart Troubles

Just to catch you up on what’s going on in cancer world this week, I thought I’d write.

I had chemo on Tuesday and started my new shot Sandostatin which is often used for carcinoid tumors. It’s supposed to help with my GI symptoms. It hasn’t so far but maybe in future It’s s 6,000 shot. Thank God for medicare. So in addition to my expensive trodelvy infusion, I’m getting this one once a month.

But something strange and miraculous happened on Wednesday. My pulmonary doc’s office (they drain my lungs) called for me to consult with another doc who specializes in pleurodesus procedures. You can have a catheter put in your back to drain fluid or have talc inserted in lung lining to dry up fluid.

They did another chest x-ray although I had just had one done maybe 10 days ago. Doc didn’t see more fluid in my lung lining. But what he saw was fluid around my heart which may mean I’ll need that drained. That’s called a pericardial effusion. I was impressed by this Doc’s thoroughness. He said the fluid wasn’t there with last chest x-ray. yikes! He wanted me to go to ER. I said “no way! I’m never going to an ER again. I hate them.”

So he got on phone calling docs who might see me stat. I got an appt for an echocardiogram yesterday and i’m seeing a cardiologist today. I’m scared. My heart has always been the healthiest part of me and Dan says that the draining of the heart can have complications. I have been having some rough pain on left side.

I feel like Janis Joplin belting out “c’mon take another piece of my heart now cancer.” Be thinking of me as we figure this out. I’m including my imitation of Dolly Parton with my new blonde wig. just for fun! I lived in Sf about time Janis was red hot (1968). I was in high school but always admired her.,Maybe my heart problems will be nothing.

Mimi’s Garden of Love: Some Good News and Maybe a Little bad

Mother’s day weekend.. So while you may never have become a biological mother I’ve seen you all mother other women and men and fur babies. It’s a tough time of year when preachers praise mothers and swear it’s our solemn duty/honorable duty to stay home abd care fior our kids.

What do you think we working-outside-our home mothers do!?! We made lunches, walked the dog, got together breakfasts, supervised crisis to determine who was sick and/or have to call in sick to work—all before we go to work exhausted, (I only called in sick twice for 30 yrs teaching). before the day began). Then we had to be perky, and agonize about the pitiful childcare in this nation. Then once we were there,we had supervisors, other teachers, and students making sure we were doing a good job. But I am proud of myself for teaching and learning along the way and still ended up with amazing kids. It wasn’t easy and sometimes my sitters earned more than I did even when I worked 2-3 jobs—especially when Dan was in med. school. But it taught my kids tenacity too and “the lonely offices of love” as Hayden writes—all of this brings me to my Mother’s day presents.

These presents are from 3 families. The tulip vase reads “mimi’s garden of love” with names of each of my grandkids etched down the side—Henry, Hugo, Madeline, Thomas, and River.

The other garden is my high rise planter garden which is fantastic because to get produce I have to go to lake house from my bigger garden. I love that it’s waist high bc it’s easier to reach with my ailing body!!!!

More good news, according to my latest ct scan my liver lesion is down to 1 cm which was up to 4! So The liver biopsies, radiation to my lesion, and high doses of trodelvy all worth it.

The continual bad news are various. One chromic thing is that my (12!) fragile, badly healed fractured ribs hurt when I sneeze & cough Also doc drained 600 ml off my lung lining 2 weeks ago i(called pleural effusion) last week, although baby (River) who is a joy for us and her family, and her birthday started the week well.

That week was radiation Monday and new baby, chemo tuesday, thorancentesis Wednesday and cataract surgery Thursday. and a uti Saturday. The body does keep the score. And then my rough antibiotic gave me tachycardia which i’ve never had but uti gone. I have follow up pulmonary doc Thursday to make sure fluid not coming back.,

Fortunately Dan ran into a posse of his oncologist friends while he was working and they all agreed I need a sandostatin shot every month to control for terrible GI symptoms. it won’t help with the long lasting nausea but wil help with the big D. So that was good news. My oncologist doc is on leave.

But overall I feel good about many things. With my new love—River—photo below and that I’ve gotten to hold her for hours at a time..

And my peonies are coming out! Below is Jane Kenyon’s peony poem.

And last but not least, despite covid, my national org Together Women Rise (open to anyone) has collected over $50,000 over 9 years for women’s projects all over the world to help them start businesses, grow food, educate themselves and daughters at schools, have taught them the problems with child marriage have given them proper sex education (and even menstrual pads bc many women were confined to huts til their bleeding stopped). and especially important, the programs to reduce young pregnancies, They are also given proper therapy for sexual abuse—so many things. And all programs led by the ppl in their own villages. No religion involved or discussed. The women ask fior the financial help and 💯 of funds go to that month’s project. So even on the days i didn’t want to show up with pain or nausea, I did. All of this info made my heart happy. And thanks to all the women who help me get that month’s program ready!

❤️ ❤️❤️❤️❤️to you all! Hope you have a happy and healthy heart this week!

Peonies at Dusk (by Jane Kenyon who also died of cancer too young)

White peonies blooming along the porch
send out light
while the rest of the yard grows dim.

Outrageous flowers as big as human
heads! They’re staggered
by their own luxuriance: I had
to prop them up with stakes and twine.

The moist air intensifies their scent,
and the moon moves around the barn
to find out what it’s coming from.

In the darkening June evening
I draw a blossom near, and bending close
search it as a woman searches
a loved one’s face.

Morphine, Mets, Movie Monsters

What a mix right? But seriously those things are taking up a lot of my energy.

The good news is my cataract surgery went well a week ago (almost). Good fairies took care of me with flowers and food. You know who you are.

More good news. River Frances Wiseman was born last week. She’s darling. 6lbs. 6 oz. Tiny. We can’t tell her eye color yet. I bought a front carrier hoping i can carry her around a bit as I did with my on babies. But there are concerns if i I can’t get my rib pain under control.

Which brings me to rib pain. I’m not sure what happened but as I was finishing up 20 radiations to my clavicle to get rid of skin mets on left side, my ribs began to hurt like hell. It hurt to walk and breathe. My rad doc Clark heard from Jordan Marlowe (amazing, radiation therapist) about how much pain I was in and decided to do a ct right then. Bless them. Dr. C saw that I had fluid in my right lung. They got on phone and called Dr. Estes my pulmonary doc and set up a time to get lungs drained. Wed at 1.

Tuesday i had chemo. I had them slow infusion to 2 hrs since that seens to help minimize side effects.

On Wednesday, a doc punctured my back and drained 600 ml off lung. We hoped that would stop pain but it came roaring back by Friday. Morphine wasn’t even touching pain before & after. Clark said my ribs inflamed so maybe it will take longer for inflammation to go down. I’ll know more today after another ct scan with contrasts. No one sure what caused it. My ribs fragile from all the radiation I’ve had. It could have been a sneeze, using a five pound wt to excercise, dragging a baby car seat in the store with my good right arm.

The next day was my cataract surgery which is no big deal but I have to sleep with an eye patch.

But think about it—crazy week. New baby, chemo, radiation, lungs drained, cataract surgery.. For many a chemo infusion alone leaves them wiped out fir the rest of the week. And i am pretty tired!

But I had a fun week too—movie group met on Saturday night to discuss Nghtmare Alley (the new one) which was nominated for best picture. It’s all about the nature of good and evil and raises questions about who the real monsters are. Really fascinating. I watched it easily 3 times even though it’s almost a 3 hour movie. It was directed by guy who did The Shape of Water. Check it out.

I’m speeding around on steroids from yesterday. Today is the other good day (besides yesterday’s chemo day) i’ll have for next two weeks. We will see.

The Countdown Begins

Wait? What? not for my cancer. But my baby daughter is due to have a baby daughter any day. We’re all so excited.

Also I have 1.5 more weeks until I complete my radiation treatments to my skin mets on clavicle, which have been mild. I’m also having chemo at same time. Exhausting some days but mostly tolerable.

Today is my holdover feel great day from steroids yesterday. I have 4 great days a month when I’m less tired and have few side effects. Last infusion caused some really humiliating side effects that included my husband having to clean me up like a child. Thank God for him. I’ll be more careful this month and may even break out the depends. The price we pay for cures….

This weekend is the Tennessee writers conference in Oakridge. I submitted some work —we will see if any win a prize.

In the meantime I’ve had this poem published just this week in the Pigeon Parade quarterly with poetry editor Black Atticus. It’s about my grandson (my daughter’s first born) who has agenesis of the corpus callosum (ACC)) the part of the brain that regulates signals from left and right side of brain. He’s 8 now and a beautiful child—doing well in 2nd grade. I attribute his success to his great parents who have provided him with stimulation for crossover im brain as he builds new pathways.

heres link to poem. It’s called neuroatypical. Swipe to right in issue til page 14 .

https://images.squarespace-cdn.com/content/v1/5ef1287345a9c44665dd6461/40045a84-9f9b-46d2-8425-7d2e88c8c53e/1.png?format=500w

So thank you God for good and crappy days (literally in my case).

photo by Elizabeth Wiseman

Rage, Rage Against the Dying of the Light

The title, of course, refers to Dylan Thomas’s “Do not Go Gentle into that Good Night.” My philosophy although I’m not angry. What reason do I have to be? I’ve lived most of my long life illness free. It’s more the idea that I’m stubbornly holding onto life. I’m reading Anatole Broyard’s Intoxicated By My Illness. Broyard was NYT book review writer. Below is review on back cover of what book is about. He had stage 4 prostate cancer and died within a few years. But he went elegantly.

In one place he writes, “Illness is a drug, and it’s partly up to the patient whether it will be a low or a high.” I usually choose for it to be high as you can see in photo below of snow juxtaposed against flowers I picked the day before. It’s scary knowing you cannot be cured but in the meantime I enjoy most of my life. Ask me tomorrow when my steroids wear off—hah!

In another place, he writes, “I think one ought to die at a kind of party, the way Socrates died.” I’m all for parties.

I like this too, “When you’re ill, you instinctively fear disfigurement of yourself…you’re going to become a monster.” This is not just a fear; it’s a reality with my missing left breast and my chest so radiated it’s black and red from burns & I can’t get reconstruction even if i want to. Broyard continues, “it’s important to stay in love with yourself. That’s known as as the will to live. And your style is the instrument of your vanity. If they [the ill] can afford, I think it would be good therapy, good body narcissism, for cancer patients to buy a whole new wardrobe, mostly elegant, casual clothes” (62). I agree. There are also thrift stores if cash constrained.

He further states, “Anxiety is the cancer patients worst enemy….[but] The sick person’s best medicine is desire—the desire to live, to be with other people, to do things, to get back to life”(63). This was harder during pandemic but I was lucky to be able to zoom with dear friends, to do zoom exercises and yoga, to listen to and read great books, to be around “safe” family. I love meals shared with others. I’m loving my wine in the evening paired with food I’m craving, streaming the Oscar contenders, dreaming of the beach house in June, and waiting for Elizabeth’s new baby girl arriving in April.

I hope to see many more springs; but I don’t have control over that. In the meantime I’ll be enjoying life. I start electron radiation for those cancerous spots on my clavicle if doc thinks prudent. There are risks.

And of course my heart aches for the Ukraine. But I continue to “try to praise this mutilated world” by Adam Zagajewski (see below). Now I must walk the dog. Exercise class later and sushi lunch with a friend. A good day,

Snow bomb March 14. My dog in background.

Try to Praise the Mutilated World

BY ADAM ZAGAJEWSKI

TRANSLATED BY CLARE CAVANAGH

Try to praise the mutilated world.

Remember June's long days,

and wild strawberries, drops of rosé wine.

The nettles that methodically overgrow

the abandoned homesteads of exiles.

You must praise the mutilated world.

You watched the stylish yachts and ships;

one of them had a long trip ahead of it,

while salty oblivion awaited others.

You've seen the refugees going nowhere,

you've heard the executioners sing joyfully.

You should praise the mutilated world.

Remember the moments when we were together

in a white room and the curtain fluttered.

Return in thought to the concert where music flared.

You gathered acorns in the park in autumn

and leaves eddied over the earth's scars.

Praise the mutilated world

and the gray feather a thrush lost,

and the gentle light that strays and vanishes

and returns.

In chemo infusion room yesterday. Closing in on 150 infusions.

I can see clearly now the rain has gone

Everybody knows that song, right? “I can see all obstacles in my way.” Okay maybe I can’t see all of them.

Last week was surgery for Deb week. On Monday i had skin lesion biopsied. Doc underwhelmed when he saw it, but I said let’s do it anyway. I felt embarrassed that it would come back as scar tissue, so I waited—hesitant to call. Finally on Thursday nurse called to let me know it was positive for cancer. I have 2 or more such lesions. I had seen them before so wasn’t terribly surprised. This case is an example of how you must be your own advocate. My surgeon gamely went ahead with biopsy so I’m not faulting him and my oncologist quickly responded when I texted him to say I found new skin mets and he set up surgery . I love my team of docs. I will continue on chemo but have radiation appt on Wednesday this week.

My second surgery was cataract for right eye. Went fine. Nothing to it. I did get a temp black eye from wearing plastic eyepatch. See below. Gone now. I was concerned they didn’t give me drops that everyone talks about. I called the office and they said it’s dropless cataract surgery. Doc gives an injection into your eyeball with all kinds of protective things while you’re under anesthesia. Now my eyesight in right eye better than left which was way better than right before surgery, I love it! I had to take off my readers bc I saw better without them. I may get left one done if I can find time among appts. Now off to chemo after I walk the dog.

But I’m forgetting the good news—my ct scan showed no new cancer in organs and liver lesion shrinking. Thank you Grant Clark my rad onco and my cancer drug Trodelvy. I still have about 10 fractured, badly healing ribs but, hey, I’m glad to be alive. Oh, and last night, my 2 grands called from DC to pray for me (4 &7). it was the 4 yr old’s idea. So sweet.

Risk Delight

The weather is warming and there are signs of flower life. I’m glad to be past walking the dog in freezing rain. I’m probably being overly optimistic but a person has to find the good in what my oncology nurse described yesterday as a crap world. I’m taking her comment out of context and I’ll explain later. In the meantime what’s a blog without some poetry? As Jack Gilbert writes in “A Brief for the Defense”

We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world. To make injustice the only
measure of our attention is to praise the Devil.
If the locomotive of the Lord runs us down,
we should give thanks that the end had magnitude.

The nurse said what she did bc I was talking about how sad it was that Jane Marczewski died from breast cancer at 31. Jane had been diagnosed with breast cancer when I was. She had gotten her fame from America’s Got Talent as Nightbirde and her lovely singing voice. My oncolgy nurse said she had worked in oncology for a long time, and she said her only conclusion is that we live temporarily in this “crap” world but our true home is Heaven. I got where she was coming from and really like this woman, but I answered “ I love this world and don’t think it’s crap." I know I’m a privileged person but so much beauty surrounds us in nature, love from friends, books, family. And some ppl have crap families, limited income to pay bills, racism, sexism, so many battles to fight but cancer has taught me to wake up to wonder. To celebrate good things.

This morning I read a post from my metastatic website from a woman who just wants to give up her treatment and die bc she feels she’s being too much a burden on her family. Many wrote to encourage her to keep going but it was her fight if she wanted to stop treatment. I’m not there yet. Ask me tomorrow when all my steroids have worn off and the nausea and big d start again.

But this is not to say be silent about your pain. to paraphrase Nora Zeale Hurston “If you are silent about your pain, they'll kill you (maybe metaphorically) and say you enjoyed it.”

I have my next scan March 7 and I’m hoping for good results although 2 new lesions have popped up on my clavcle. Dan is not sure what they are. My doc says skin mets are a poor person’s CT scan.so it may mean my drug isn’t working. I' hope we don’t see more progression.

That’s it for today. The neuropathy in my fingers makes it hard to type. Yoga in 15 minutes, My words for today “Risk Delight.”

My Beautiful Torture

By 7 am

Synthroid -125 mg ~ check,

xanax—-check

hydrocodon-.25 check

lamodil-check

vit D3-2000-check

multivitamin-Check

amoxiclian—check (for bad tooth)

zophran—check, for nausea

Despite my many meds ahead of time. I look forward to Tuesday, because I’ll get my chemo. First are the other premeds—benadryl, steroids, peptide, two anti nausea drugs, and atropine. I could be an IV drug user because i love the effects of these drugs. I feel relaxed and my head/eyes roll back. And I know I’ll feel good for two days—little nausea, little diarrhea, no depression, full of energy.

It’s now Wednesday. The big D has started already but not bad. I’ll be like this til I get my next infusion Feb. 13.

I call this my beautiful torture because while halting cancer growth—-there are many bad side effects with Trodelvy. Plus it’s like the rack bc it’s stretched me in ways I couldn’t have imagined. Besides the complaints I’ve named, I also get bad Utis and bad teeth both requiring 🐜 i biotics.

It’s also beautiful bc I think of some many women around the world who can’t get it. Women in Australia just recently got it. UK is trying to get it approved. In India it’s not approved.

It’s expensive—in India it costs 140,000 out of pocket. I feel for the women on my stage 4 facebook website, who have run out of options and are terrified.

Here’s one post that made me so sad. Thankfully, my children are grown and doing well. This woman has had her life taken away.

“Nothing good has happened since last year.. I was diagnosed with stage 3 tnbc in April 2021 and had to terminate my first ever pregnancy. I started AC to no effect.. the tumor grew on it.. I underwent SMX with nodes removal from armpits and neck.. I did 12 cycles of TC.. finished 15 sessions of radiation.. currently on Xeloda for 6 months.. PET-Scan showed some infiltration in lungs.. Did mediastinal nodes biopsy.. Received the reports today.. and I am officially stage 4 now.. I believed in God.. I prayed hard especially before every test and report.. But today I find myself so confused. I was reading the previous posts and found that most of you still have so much faith in God.. I find it amusing.. How can a person have faith in anything / anyone in stage 4 cancer..”

The only thing I say to God now is thank you for what I have. But it’s also a thank you to science, the doctors, my once healthy body, my friends and family and the list goes on. I’ve been lucky with so much love from friends and family. I don’t know what happens in the afterlife, but I don’t want to die (it’s a mystery). But I have lived my kingdom of God here.

A Gathering of Kind Friends

Last night my beloved poetry friends who write and appreciate poetry joined in a warm zoom square love for my birthday, all orchestrated by the amazing Nancy Maland. They all read their favorite poems and sent them to me. Some even created poems for me. I was so honored. I don’t have adequate words to express how grateful I am for these women who shared their work with us all. The ribbon reads a gathering of friends. Truly. One friend— Elaine Oswald—zoomed from Scotland and it was late for her, 11:30.

Also Leah Carmon, poet laureate of Knoxville attended. She’s impressively a math teacher and mother of two (one who has autism) and she herself has an autoimmune disease that requires chemo infusions.

People also dropped by all day with flowers and candy. Dan brought me red roses. People wrote lovely notes in texts or on facebook.

Marcia Goldenstein, artist emerita at UT, designed the box that holds my friend’s’ poetry.. Her most recent, amazing work is doing embroideries of famous women activists through history. Check out her link. it’s called Women in Stitches. If you scroll through the link you can see her detailed faces. You’ll be stunned. https://marciagoldenstein.com/section/381168-Women-in-Stitches.html?fbclid=IwAR30Up1apxouxW0Q0auHRWqGbJ42XD1qWCh7nvGGwMvOW0Xc_sxwuokV2Uw T

I had chemo yesterday for 5 hours including a B 12 injection and will get a magnesium injection today bc it’s low.

I sat beside a newbie with cancer. She’s a 75-yr-old fitness instructor with stage 1+ cancer Her2-nu positive, no metastasis. She she was in shock as we all are when we hear the word cancer and chemo even if we’re stage 0. She was worried about losing her hair—I gave her advice. She already has 3 wigs she loves. I told her to go ahead and shave her head. It’s easier than watching it all clump out. I told her cold caps not worth it. You want to get rid of fast growing cells with chemo—not preserve them with cold. She asked the questions. I don’t offer advice unless asked. Her head was already swimming.

I told her she’d do fine—that they have great drugs for her kind of cancer and not to let my recurrences scare her. I was 3c, the bad triple negative. I was probably 4 from the start (metastatic de novo) ) and will be on chemo the rest of my life, but I have a good life. I’m still fine after 146 chemos and that by being in shape I’ve withstood them, so she has advantages. She called me her new friend. I often selfishly want to listen to my book during chemo but she wanted to talk so I was happy to help. And I told her not to worry about what caused it. I had just heard yesterday that a popular nutritionist just died of head and neck cancer. Child in college. cancer is relentless & non—discriminating. It’s usually just some aberrant cells. I told her to enjoy her life—she was worried about sugar. I told her studies are mixed on that. She should eat healthy but not to worry. Her healthy previous lifestyle will help her. It has me.

She asked why can’t i just have it cut out and I explained many undetectable cells are in your body and they get rid of those with chemo, radiation. She seemed more calm when I left. I was nauseated in pm after 2 anti drugs infused so I took a zophran when i got home.

With all that I was apprehensive about how the evening would go but it was uplifting! I was so touched all these women attended despite busy schedules. Love them all. Gentle, smart, talented women. How did I get so lucky? So happy to make it to another bday!

By the way, it was also Virginia Woolf’s birthday. A book every woman should read is “A room of one’s own.” Happy to share my bday with her. My MA thesis features her and her “To the lighthouse.”

I’ll close with a favorite poem on kindness. I’m blessed (not in the arrogant sense I deserved any of it) but iI’m appreciative and grateful. The poem is right—you must lose things to become more kind and you must travel to see how others live. As poet Mary Oliver says in Wild Geese “Tell me about despair, yours, and I will tell you mine.”

Kindness

Naomi Shihab Nye - 1952-

Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.

Before you learn the tender gravity of kindness
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day to gaze at bread,
only kindness that raises its head
from the crowd of the world to say it is i you’ve been looking for and then goes with you everywhere like a shadow or a friend.

Heart Healthy

Yesterday I finished my 145th chemo infusion in five years. People want to know how I’ve withstood so many of the worst chemos—you can tell how bad they are by hair loss. The worst ones kill fast growing cells which includes hair follicles. And I have no hair anywhere—eyelashes, brows, legs (they are soooo smooth, and other places I won’t name.) I’ve had 7 treatments of adriamycin and cytoxin which people call the red devil bc it’s so bad and its color is red after the red color derived from adriatic sea. However, the one I’m on now seems to be worse—trodelvy for its various side effects.

My secret? Honestly I think it’s bc I have a good heart. I exercised continuously but not excessively all my life. I stopped running a few years ago bc my knee was twinging and who needs a knee or hip replacement? So for a woman my age—68–I’m breaking a taboo giving my age and weight 125—my heart is still in great shape. Two local programs offer exercise to cancer patients cancer support community East Tn. (free)

https://cscet.gnosishosting.net/Events/Calendar

Or survivor fitness which offers scholarships for 12 week program with trainers.

https://survivorfitness.org/ or choose the y. And of course walking is free.

Also I have a wonderful family and friends who pray for and support me. Prayer alone won’t do it if you haven’t done the work. Heart failure is what kills many chemo patients. (Disclaimer: I know many who suffer from heart problems and can’t do these things. I do have some genetic links to heart failure myself. I’m just trying to answer the question of why I’ve survived for 5 years with my cancer which has a high mortality rate and I’m metastatic.

We exercise for many reasons—vanity, competition, fun, collegiality, endorphins—but I’ll give you another, if you want to survive a bad disease, exercise ahead of time. I still hike, do exercise classes and yoga even with neuropathy and limited range of motion in left arm (can’t raise it, “as in teacher call on me!”) and walk even if I don’t feel like it because many days I feel like crap. And those are my words of wisdom for today.

me after chemo yesterday.

Gaslighting vs Truth Telling

I’m trying to stay positive, but I thought I’d write about things bothering me in addition to my creeping cancer.

First of all I’m very, very frustrated by the ppl who refuse to get vaxxed. The very ppl who claim to be pro-life are killing ppl and babies. This blows my mind. The disease affects the developing babies in utero (and my daughter is pregnant!). Some babies born to covid moms have more days in nicu or born prematurely. Here’s a good article below. But all studies indicate that vaccines prevent serous illness to mom and baby. But I’m still frustrated with you if you’re not vaxxed or you’ve spread misinformation about it.

https://amp.theguardian.com/us-news/2021/dec/29/us-covid-vaccines-pregnancy

My second truth is saying my hubs also has a chronic condition so if you’re not vaxxed you are harming him too—not just me with metastatic breast cancer. We encourage and commiserate with each other. He gets so frustrated by health care workers not vaxxed. How selfish. btw He is an oncology doctor and is vaxxed for his patients and himself.

My third truth is I’m so over ppl who ignore verifiable truths. The capitol riot was peaceful? The election was stolen? I know what I saw for hours on tv and know the truth that over 700 ppl have since been arrested and charged for participating. Plus law suit after lawsuit was thrown out by courts (over 50) by even Trump appointed lawyers who agreed that the election was legit. And if you’re still watching fox for news you’re not gonna get accurate political news because they are set up for entertainment—they can legally lie all the time . Lawsuits have proved it. And legit anchors like Chris Wallace have left. Be better than that. Find other sources.

So while ppl like my family are struggling with scary life and death issues, privileged white ppl are slinging insults about a stolen election listening to politicians who call opponents socialists. Really what they’re saying is “no one works as hard as white Americans and ppl of color will steal their money.” Is this a new idea? No, after the Civil War white ppl called black ppl “socialists” and the narrative was if black, brown or indigenous ppl got power they’d destroy white people’s lives. So they made it more difficult for former enslaved people to vote, to own property or hold office. The most famous case occurred in Wilmington, North Carolina where legitimately elected black/white politicians were murdered or terrorized by whites who didn’t want them to have land or power. So some black families were never able to build up generational wealth the way white families did because of the policies preventing backs from advancing. https://en.m.wikipedia.org/wiki/Wilmington_insurrection_of_1898

History will not remember our time period kindly. Ppl are being gaslighted which means politicians are telling lies to make ppl think they’re unable to know truth and so they rely on ppl who keep repeating the same lies over and over. The term comes from the 1944 movie “gaslight” in which a man tells his wife the lights are on when they aren’t in order to drive her crazy and get her money. This type of abuse happens in abusive relationships to convince the victim they are the crazy ones

I understand the frustration from people who just throw up their hands and want someone to tell them what to believe. That’s how autocrats come to power and what happened in Nazi Germany. They say “you’ve got this problem? we the leaders will fix it for you” (and jail the opponents).

btw socialism happens when govts own ALL companies. Hardly happening here. I am not a socialist. I am a free market capitalist.

So let’s hope for a more peaceful, honest year. Pay attention to facts. Do fact checks. Do research. I’ve taught research for nearly 30 years and trust facts from credible sources. We need a healthy 2 party system without name calling and adults at the wheel not supporting violence. I have voted for dems and republicans but this has gotten crazy. And let’s pray that the pandemic gets under control. Get your shots! I believe in us—all of us.

And one more truth, while this current admin has made mistakes, Biden is doing a great job even though he inherited a crumbling economy and an attempt to overthrow the govt. Childcare credits, stock market way up, jabs in millions of arms (despite finding out 45 had no fed plan for vaccines), jobless rates falling, clearing up logistics problems in LA harbor, healing wounds in foreign relations & our status in the world, exporting vaccines, performing the feat of airlifting 130,000 ppl out of Afghanistan in an extraordinary short period of time. Yes, sadly 13 service people died but more would have died if he hadn’t. Plus Biden had inherited the former prez’s messy promise to the Taliban to get out by May—and he had not even spoken to the legit Afghan govt..

I hope 2022 is better for all of us—especially in light of the millionth (undercounted) worldwide case of Covid as we enter the New Year.

“I can bear any pain as long as it has meaning”

The title comes from my favorite book 1q84 by Haruki Murakami. This concept is tricky for metastatic patients, especially since our endgame is not curative and hence our illness/pain often has little meaning. But at the same time, if we feel as if we are getting better, at least somewhat, then pain is tolerable. And my new molecular test shows i have some kind of gene that predisposes me to cancer. So I can stop beating myself up wondering what I did to cause this disease.,

Today I feel as if my pain, nausea, GIi discomfort is easily tolerable bc my most recent Ct scan shows that maybe my liver lesion is shrinking. The report also states that it looks like the center of the lesion may be necrotic from the radiation I got the end of October. That was a tough time—radiation, chemo and 2 liver biopsies within 2 weeks. But it was worth it. No other disease is showing up. Ribs are still a problem. 8 old fractures (4 on each side) with one on left showing concavity—whatever that means. They hurt at night especially when i attempt to turn over. And bc of the ribs I cannot straighten my shoulders so i look lopsided on the left and no amount of pt or yoga will help that. My ribs mostly distress me bc I can’t pick up my grands and a new one is arriving in April. Yes I know I can hold but you make a lousy baby sitter if you can’t lift!

Oh and speaking of babies ct scan report said my uterus was surgically absent. Nope. Still have it 😀. Because of my age maybe it’s withered up haha.

Another plus. I got a “promotion” of sorts—I only see the Doc once a month now instead of at the start of each new cycle. My white counts, hemoglobin, neutrophils are stable—low but stable.

Dude and up at 4 am bc of steroids for me yesterday. And this is why i’m probably writing.