Sep. 19th, 2018 10:34 pm
pegkerr: (Dark have been my dreams of late)
Just before my alarm went off: I dreamed I was standing in the middle of the street, looking down the block. It was dusk, and I saw people in costumes going door-to-door, trick-or-treating.

The sight made a terrible pain well up inside of me. I said aloud, “I’m so lonely. This is hurting me and my girls so much.”

It was on Halloween last year that the doctor broke the news that what we’d seen on the PET scan was not Rob’s lymphoma coming out of remission. It was a totally new cancer, leukemia, caused by the first chemo he’d undergone four years previously, and Rob now had perhaps two months to live. (He almost made it to three.) And then the doctor kindly left the room to give us some privacy so we could cry in each other’s arms.

The dream plunged me deep into my grief all day, and it made me realize how much I’m dreading Halloween. I’ve already planned to take the death anniversary off work, in January. I think I need to make some cope ahead plans for Halloween, too.
pegkerr: (Glory and Trumpets)
Rob has achieved COMPLETE REMISSION!

And I have been offered a JOB! I will be working for the Minneapolis ELCA Synod (the local governing body of the Lutheran Church). I will be, among other things, assisting with the administration of the process to call new pastors to Lutheran Church.

Details at CaringBridge here.

This has been the best week, like, ever.
pegkerr: (Default)
We finally caught up with Rob's oncologist who interpreted the PET scan from two weeks ago for us. Rob has put on a waiting list for a new clinical study. He may get called to go in for tests sometime in the next 2-8 weeks. He would be a good candidate, but he may be ineligible because of his participation in an earlier study. Read more at our CaringBridge post.
pegkerr: (Default)
PET scan: liver glow GONE. Spleen glow GONE. Central glow deep in the abdomen (this is the one that really worried the doctor last time) GONE. Neck glow GONE. Slight glimmer on back of head remains, but no bigger than last time. New slight glimmer at tip of stomach: may be simply inflammation. Blood work looks perfect.

Our doctor said, "This is an enormous response. Marked improvement. Everyone's happy. Take the weekend to celebrate."

So...yeah. Thanks to Mayo! Thanks to our doctor. Rob's not ENTIRELY in remission, but he's pretty damn close. Which is absolutely amazing!

(I sent the girls Snapchats all day about "Our Day at Mayo" and took screen shots of most of them).

Our Day at Mayo )
pegkerr: (I told no lies and of the truth all I co)
The flu put me badly behind, but I'm not quite so far behind now.

Week 31: Minicon
We're there every year!

Week 31 Minicon.jpg

The challenge that [livejournal.com profile] minnehaha K. gave me was that the Minicon card had to be made entirely with materials found at Minicon. The image in the lower left was cannibalized from the business card of the Artist Guest of Honor. I used bookmarks left on the freebie table, promotional postcards, bits from the Bozo Bus Tribune, etc. I like this card.

Week 32: EverTwixt
EverTwixt awaits you if you dare.

Week 32 EverTwixt.jpg

As part of my attempt to switch career fields, I started a marketing internship with an old friend, a writer I met at Clarion almost thirty years ago, Kelly McClymer, who is attempting to start a new website, EverTwixt.com.

Week 33: PhotoShop
It's great fun, but an amazing time-sink.

Week 33 PhotoShop.jpg

Also as part of my training, I've started learning PhotoShop. This was an attempt to make a graphic that could be used as part of the EverTwixt site: one of the stories available for download, "Maiden Ash" is a variant of Cinderella, and this image is suggestive of the moment when the stepmother scatters ivory beads and jewels in the straw and tells the heroine to pick them all out into separate piles if she wants to go to the ball. Of course, in PhotoShop, I was doing the exact opposite: painstakingly assembling the layers: straw, then jewels and beads. When I made the card, I cheated and embellished the beads with some glimmering paint [livejournal.com profile] minnehaha K.had hanging around.

Week 34: Shadow
"There are three shadows on the liver in your CAT scan, and two on the spleen."

Week 34 Shadow.jpg

This is what the doctor said when he came in to our meeting that week. (For details, you can see our CaringBridge). This is not an actual diagnostic image taken of Rob, but a graphic I found online, highlighting the liver. I added the shadows on it with PhotoShop.
pegkerr: (Both the sweet and the bitter)
Rob had another PET scan yesterday. The results were ... inconclusive. Difficult to interpret. His immunatherapy clinical trial continues. Read more at our CaringBridge account here.
pegkerr: (candle)
At 5:00 a.m.
the old Buick growls to life
surly at being roused from winter hibernation
for a predawn appointment ninety miles away.
We drive through the silent streets
past the light rail station
past the Falls
over the Mendota Bridge
past the highway fork where the oil refinery
flings its lurid glow against the sky.
The curved streetlights hunch
broodingly over the road
meditative as monks at Lauds.
Swirling fog and icy spindrift shines against the darkness
in the cones of light falling away from their burning eyes.
He sleeps beside me as I drive
the once crisp line of his goatee blurred
by the grizzled whiskers
growing out over the biopsy scar.
And the light sweeps over him
again and again
mile after mile
a benediction and a blessing.
All shall be well
All shall be well
And all manner of things shall be well


We drove to Mayo for a surgical procedure today, to have a port put in for Rob so he doesn't have to keep getting IVs in his elbows for the infusions (the veins in his arms are very bad).

I write very little poetry, and I don't follow formal forms, and since I'm so ignorant, I don't consider myself to be any kind of judge of what's good and what's bad.


I kinda like this.

I blame the fact that I had to get up at 4:00 in the morning.
pegkerr: (Haven't you been listening to all that I)
I fell asleep in the chair in the room where Rob was getting his infusion. Woke up hard after an hour with a series of cross and sleepy kitten noises, and Siri, on my iPod Touch, responded by telling me, "I'm sorry. I don't know what you're telling me."
pegkerr: (Default)
I have been waiting to post these until we told the girls the latest medical results.

Week 15: Pain
Everything hurts.

Week 15 Pain

Since Rob's heart was damaged by chemo, I have been doing all the shoveling. At the first snowfall, doing the job, I hurt my back. Badly. Ice and painkillers and pillows and baths and ow and tears. It really, really hurt. At the same time, I have been fighting off depression (in the Victorian language of flowers, marigolds are associated by some with grief or despair). It has been very difficult to deal with physical pain, combined with the anxiety of job hunting, combined with the bad cancer news. This card is tied, symbolically, with the marigolds, to a card in my Soulcollage deck, The Woman Who Listens to Ravens.

Week 16: PET
Rob undergoes testing at Mayo Clinic.

Week 16 PET

I cut the words and the picture of a patient undergoing a PET scan from the various educational brochures we've received from Mayo (really, they will give you a brochure about anything under the sun). The blobby shapes draped over the words are photographs of some glassblown art hanging from the ceiling in the large atrium at Mayo Clinic (printed out on tracing paper, which is the first time I've used that technique). Here is a picture of the installation, in situ. Very pretty, if you look at it one way.

But every time I look at those shapes, I think they look like cellular structures. Even like tumors.

I suspect that impression is intentional.
pegkerr: (Deal with it and keep walking)
Rob's last PET scan was suspicious, and the most recent one, taken this month, was worse. Our doctors did a biopsy, and we received the results today. Rob's cancer has indeed come out of remission, although at least it hasn't reached his bones yet. He is starting an immunatherapy trial at Mayo Clinic next week. Read the details here at our CaringBridge site.

We had waited until tonight to share the news with the girls that the last PET scan was bad because we wanted them to get through their finals first. Finals are over, however, and they have both been told.
pegkerr: (Deal with it and keep walking)
We've had two trips to Mayo in the past two weeks and have received both good news and inconclusive news. Good news: surgical site (Athena's old quarters) is healing, and PET scans show old cancer sites are dark. Inconclusive news: there are some new glowing areas on the PET scan in his neck area...but we aren't sure whether it's cancer or not. Read further on our CaringBridge report (see link).

Read the post at our CaringBridge here.
pegkerr: (Deal with it and keep walking)
I've posted a link to CaringBridge, ominously titled, "Really, it's not been a great month (or) Dagnabbit, Athena."

Rob's head tumor seems to have made a reappearance. We went to Mayo where it was surgically removed today. Click here to read further at Rob's CaringBridge journal.
pegkerr: (Glory and Trumpets)
Had a follow up visit at Mayo today. Today's PET scan was perfectly clean, and the surgical wound is so well healed that we don't need to dress it or cover it any more. The total remission continues to hold strong. Yay! Only disappointment is that the genetic report on the tumor still isn't ready (way overdue). Next follow up is in November.

Read the rest at our CaringBridge here.
pegkerr: (Default)
We have been back twice to Mayo to follow up with Rob's surgeon. His wound is healing well, but more importantly, the biopsy results indicate his lymphoma has been completely routed from his body. For the first time in two years, apparently, Rob is completely cancer-free. YAY!

Read more details at our CaringBridge post here.
pegkerr: (Deal with it and keep walking)
Back from Mayo for a followup visit today which turned into an unexpected spot of further surgery for Rob. They REALLY want to make sure that scalp tumor doesn't come back.

But the doctor did say the wound seems to be healing well. It's just a little deeper now (and again, they'll biopsy what was removed today).

I'm relieved. Rob had been experiencing a ramping up of pain the past couple of days, as well as the sort of sensations he'd had before when the tumor was growing previously.

The doctor also went out and picked out the bits of gauze threads I hadn't been able to remove because Rob was too squeamish to allow me to dig them all out. (Since the doctor's not married to Rob, he's more willing to be ruthless). It was a relief to hold Rob's hand and let someone else do the hurting for a change. I HATE hurting him.

Keep sending those hate waves at Athena, people. She's about as stubborn as Rob.
pegkerr: (Deal with it and keep walking)
The tumor on his head has shrunk to skin level. Rob's heart is slowly improving. Next step will be testing/PET scan in Rochester on March 17.

See more at the CaringBridge post here.
pegkerr: (Default)
Rob is back from almost three weeks of radiation treatment at the Mayo Clinic in Rochester, Minnesota. Catch up on the details at our CaringBridge here.
pegkerr: (Rob)
Rather to our astonishment, Rob is beginning three weeks of radiation at the Mayo Clinic this coming Monday. Everything fell into place extremely quickly.

Read the details at our CaringBridge here.


pegkerr: (Default)

January 2019


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