Tag Archives: cancer

Sorting, Donating & Remembering

 

peru days

Robert in healthier days, working in Peru (2016)

I have been putting this off. Not that I needed to do it in a hurry. Today I spent some time sorting through my husband’s jeans and shirts. He had a stash of jeans in large sizes – he used to be a big guy. Cancer diminished his body, but not his spirit. He had given away most every piece of clothing to a local shelter where he volunteered. The only clothing left in his closet were two pair of jeans, one pair dress pants, a sport coat and 3 shirts. Then I found the stack of jeans. I’m sure he planned to take the bag to the same shelter. I will do so this week, along with some sweatshirts and PJs that I found.

Robert was a bicyclist and loved riding the trails on his mountain bike up in Memphis and in Jackson. But here in New Orleans the terrain is flat. He loved riding these streets as well. Most days he would ride ten miles. He did that until earlier this year, until his energy was zapped by chemo. All the memories fill my heart as I sort through his old biking clothes – he was serious – he had all the gear of a racer. The elastic in his biking shorts has dry rot now. Ditching those.  One thing I know, is that my husband’s life is so much more than all these things.

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Biking along the Natchez Trace

As I sort and pack up his clothing, my very heart hurts with pain. Until I pull out his favorite biking shirt. Neon reflective green, with black stripes. I can see him now, soaring over the hills and through the sand, never stopping, breathing deep, sweat dripping, blowing hot breath as he pedals up a hill. He is strong. He is muscular. He is healed.

As I will be one of these days. But until then, my heart still hurts.

Mardi Gras and “Coat of Many Colors” that we made; Riding the streets of New Orleans.
~~~~~

 

The Moment of Departure

Friday, September 13, 2019
IMG_6761It is 3:00am on Friday morning. I am remembering. The coffee maker beeps and I go to the kitchen and make my first coffee in my cup from Elizabeth’s Restaurant – one of our favorite places for breakfast. My first memories of R’s and my time together are of our times on the phone on early mornings as we have first coffee in separate cities – I am in Jackson, MS and he is in Delhi, LA, back in 1998.  Nothing tastes quite like that first sip of Community Coffee as we look toward the rising sun.

Wednesday, August 14, 2019…(continued from last week)
I ask R. again if he is certain he is ready for Hospice. He nods. I call the doc and everything is set up before the sun goes down. R signs all the papers with the nurse and he is at ease over the decision. At last, I think.

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Over the next 2 days R. is getting weaker and weaker, more pain. Several visits from loving friends from Rayne Methodist. He loves them as well. Afterwards, as he sleeps, I play Simon & Garfunkel. Silence like a cancer grows.

He can no longer swallow pills so I call hospice and they send out liquid morphine and Ativan. They say give him .5 ml morphine every hour. That’s not enough. He cries out in pain. Esophagus is inflamed and painful. Difficult to swallow, so I drip .75ml morphine into the side of his mouth as I gently hold his head. No sleep for either of us. He rests for about 10-15 minutes, then is in pain again.

I continue to get him up and on the walker from bed to sofa. Calls me every minute it seems. We say prayer together and he reads to me from the Upper Room meditation, then puts the booklet on the bedside table. “My greatest fear is that I will die mean & nasty  –  I want you to call me on it if i get that way.” I assured him I would. He has never been mean and nasty and I tell him I do not think he will start now.

Sunday August 18, 2019
I lie with him on the guest bed. He wakes – I mindlessly move something from one place to another on the bedside table. He is lucid. “Can you explain to me the logic behind what you just did.”  “There is none,” I smile and answer. “I am merely being here with you.”

I call hospice on Sunday morning and request a hospital bed, as he can no longer get up without help and I’m concerned he could fall.  I go to a local store to purchase single bed sheets. These are the sheets that my husband will die on, I think, and I weep as I make the purchase. Afternoon, aide comes and gives R. a bath in bed, then sits him up in the wheelchair. Hospital bed is delivered. While they set it up with much clanging, I wheel R. back to our bedroom. My son John, friend Carol Spencer and Pastor Jay Hogewood follow. Carol gives us communion, Jay anoints R. with oil. R. is looking for the W.H. Auden poem The Wave, his favorite line of which is I inhabited the wake of a long wave. He speaks with Jay about what he wants in his memorial service. Come thou fount of every blessing.

I tiptoe in to give him his meds tonight, “What’s going on”. I’m here to give you Morphine and Ativan. He pulls the sheet over his head like a little kid and says No.  I wait, then drip the meds under his tongue.

Monday August 19, 2019
Nurse is here and I assist her in changing the dressing on his pressure sore. I hold his frail body on his side so that he sits up a bit. He tries to focus on what we are doing as I hold him and the nurse replaces the bandage. His eyes open wide. “Is this it? Is this it?” No, this is not it R. This is not the moment of leaving this life to the next. “Are we in New Orleans?” Yes, we are in New Orleans. “Good,”, he says as I lay him gently back on the pillow. My husband is ever the curious.

Daughter Jennifer is here and she plays Bob Dylan, R’s favorite. We watch as his hands tap to the beat of Dylan’s tunes in his sleep.

Friends Kelcy and Jim Patterson stop by in late afternoon. Kelcy says she is staying the night and I am grateful. Jim is a physician and takes R’s pulse and listens to his heart. Later we tell all good night. We do not sleep. R is calling out for me all night; intense pain. More morphine and Ativan, not working; he calls me to help him, concerned that he might soil the bed. I struggle to get him up and on the bedside commode, then back in bed, and he is using all his strength to help. I ask Kelcy to help get him back in bed. “Put your hands around my neck” I say and he does.

I lift him up into bed and Kelcy lifts his feet , then with his arms still around me I pull him up so that his head is at the top of the bed. He hugs me tightly, and I have pleasure in that. “I think this bed is just for one person,” he says, “I don’t think you can get in here with me.” I agreed with him and pried his arms from around my shoulders and he immediately rested on the pillow. More morphine. .75ml. He sleeps for a few moments. Then he calls out all night in pain. I give him as much morphine and ativan as I can but he does not rest.

Tuesday August 20, 2019
Morning and R. struggles to breathe. Daughter Jennifer is here. About 10 am R. tries to sit up in bed, gargling acid reflux, “Not working, not working”. I call Dr. Jim back, as he and Kelcy had left a few moments prior, and he returns. He suctions out about a cup of brown acid from Robert’s throat. R. is still restless, but less pain. I give Jim the bottle of morphine and I cradle R’s head. We drip the liquid into his cheek. I watch R take two breaths, then no more.  The point of departure is here. “He’s stopped breathing,” I whisper. “Faint heartbeat. No pulse. Heart stopped. He is gone,” Jim says. I feel great relief for my husband. The pain has ended. I watch his face and for the first time in over two years there is no sign of pain, no sign of struggle, no sign of worry.

I kiss him goodbye.

Hello darkness my old friend, I’ve come to talk with you again.

 

 

 

 

 

Life Goes On

So this is the story ….. August 2019
My husband Robert – my heart and soul and love – died on August 20, 2019.  I am broken and raw.  I will try to summarize the past two years, and what led up to his death from gastric cancer. My chronology may not be exact, but this is how I remember it.

June 2016

My husband Robert finally retires to New Orleans, so we are together after almost 2 years living apart – me living in New Orleans having opened a business, and he living in Memphis trying to sell our house.  We are so excited to be together again. We have plans! Fun plans in our favorite city in the world, New Orleans.

March 2017 Robert has a bike accident.
Robert is out riding his bike. Seems a long time gone. I hear him come in. He walks slowly into the living room and says “can you put my bike away for me?” I look down and blood is running down his leg and arm. I aim him toward the bathroom and doctor him up as well as I can – scrapes and bruises. He seems ok, just sore. Next day he can barely walk so off to the after hours clinic we go. He is injured, with a cracked collarbone and bruises and contusions, slight back injury and possible groin sprain. He is bandaged up and sent home to check in with is regular doc the next day.

Doc does xrays and blood tests and sends him home with pain meds. He is on a walker for several days, then a cane. Doc calls – blood test reveals unusually high calcium phosphatase levels. This indicates that something is happening in his bones. His regular internist schedules tests.

April 2017 Sent to Oncologist.
Scans reveal numerous lesions throughout his body. On his femur, ribs, collarbone. Metastatic carcinoma of unknown origin, they say. He comes home and says, “They say I have cancer and I could be dead by Christmas.” We fall to the floor weeping together.

After doc visit,“I’m feeling great; how is it that I have Stage 4 cancer and feel good?” he asks over and over.  He decides to go to Peru again in summer for his teaching project, even though in pain in his thigh and back. After a couple weeks in Peru, he realizes his injuries are not getting better and he comes home and schedules another visit with doctor. He begins taking X-Geva shots once a month to build up bone where the cancer is destroying it. That is working. It’s a horse race between the X-Geva and the cancer.

Summer 2017 through Summer 2018, More Tests & Scopes, and a Heart Scare.
From summer into fall, R. undergoes scopes in every organ of his body. No cancer is found other than the original lesions on his bones. He rides his bike one morning and feels some tightening in his chest. He has appointment for an EKG anyway, so he decides to drive to Touro Infirmary. In the hospital, the tech is attaching electrodes and suddenly Robert says his chest is hurting and he is going to be sick – the tech witnesses him going into cardiac arrest and pushes the Emergency button. R is surrounded by about 15 docs and nurses, they tell him he is having a heart attack and he tells them to call me. They put in a stint, he stays overnight, and he is fine – just shaken up and confused about what happened. He goes home, takes it easy for a few days.

September 2018 Decision to Close Our Shop.
Caring for Robert and running our shop by myself was beginning to take a toll on my own health, and Robert was getting sicker – we jointly made the decision to close our shop. I am glad we did.

Finally, another scope of his stomach reveals cancer cells in the lining of the stomach – the origin of his cancer is discovered there. He continues to ride his bike and do normal things – he is extremely tired and has pain in his back and severe acid reflux. Now to formulate a treatment plan – chemo is first line of defense, so he begins his first 8 week round of chemo in October, and he is so ill we don’t think he will make it fully through the 8 weeks, but he does. He loses weight and is extremely tired. He does not enjoy any holidays. He is miserable.

January 2019 and a Reprieve.
He improves after the end of the first series of treatments and regains some of his energy and appetite. We take a cruise to the Yucatan and have a very pleasant and relaxing vacation. He is able to walk around ruins and eat everything. He naps when he is tired and we really enjoy the trip.

February and Decision to Stop Chemo.
Time for his 2nd round of 8 weeks, and he is dreading it. After two weeks he tells the doc he is stopping chemo, as it is making him too sick and weak to enjoy life anymore. His left lung collapses, and fluid builds up. Doc says if he cannot tolerate chemo, then insurance may possibly pay for immunotherapy. He begins Keytruda in May – a 1.5 hour infusion every 3 weeks.  I drain fluid off the left lung every other day at home, and he goes to Touro about every 2 weeks for right lung drain.

Chemo Destroyed Pleuri and Caused Bleeding Ulcers in Esophagus.
June and July he continues the X-Geva and Keytruda, and only gets weaker and his breathing is labored. He keeps going. He cannot eat without pain, is totally miserable and cannot tolerate food unless it is soft – and even then he eats only a tablespoon or so. He is trying so hard to get better. He has a PET Scan and the cancer is stagnant. No new lesions. The keytruda is working. But he is so sick because he cannot take nutrition and cannot breathe. There is nothing that will make him comfortable. He has no enjoyment of anything, cannot walk from the sofa to the bathroom without stopping to rest. Cannot ride in car without suffering.

Decision for Hospice Care.
On Wednesday August 14 he said, with difficulty, “I can’t go on like this. I’m ready for Hospice.”
~
I believe I can heal and move through my grief if I write this story. I will write more about this journey very soon. But for now, I will stop here and let my emotions rest awhile.  Here is a link to my husband Robert’s obituary. 

 

 

Moving: New Venues & Adventures!

After 4 delightful years at the little shotgun house on Magazine Street, Uptown Needle & CraftWorks is MOVING!

Our last day of business at 4610 Magazine will be October 6. We are moving in a couple ways — temporarily to an online shop, as well as to new venues for workshops. You will hear more about this exciting news in weeks to come as we transition to this new phase.

We will be offering workshops and our products in Covington and at the Backroom on Bourbon (part of Jezebel’s ). We will also continue to offer workshops at 4610 Magazine with the new tenant, Home Malone, where owner Kristen Malone represents over 80 artists and features fabulous products made in the Deep South. Kristen plans to open her 2nd location in January 2019.

Many of you know that my magical husband/partner Robert has been living with “metastatic carcinoma of unknown origin” for over a year and a half.  Even though he has cancer in his bones, he felt wonderful for over a year now – riding his bike 10 miles a few times each week, planting a garden, teaching and working in the shop.
Fast forward to July of this year and weeks of physical distress for R. Thanks to the wonderful doctors at Touro Infirmary, the origin of those cancer outliers was finally identified. Robert has a port (he calls it his USB) and will begin chemo this week with a mixture of chemicals that will attack those renegade cells with the fury of a bad storm.  He has documented his journey thus far on his blog here.
We are very excited about this transition, and I am pleased to have the freedom to focus on my husband and our life together. I will keep in touch through my blog and through email newsletters about workshops- and perhaps a “reunion” soon.
When we opened our shop in 2014 the #1 focus was never on selling fabric, yarn or handmades. It was on building community through community engagement. You have created a wonderful community that today totals over 3500 strong! We thank you for sharing your love, support and creativity with us. We will miss you all more than you know.
See you soon at a workshop near you, or through your orders online! If you have not checked out our online shop, please do!
Peace be to all, and please keep us in your prayers.
Emma & Robert

 

AND WHAT’S A MOVE WITHOUT A SALE?
Up to 50% OFF* 
ENTIRE STOCK!

  

* ALL Fabrics & Pre-cuts 40-50% off regular prices. PLEASE NOTE:
Our website cannot offer the 40% fabric discount through the regular purchase platform; however, you may certainly browse through our fabrics here, make note of what you would like, call 504-302-9434 to pay by credit card. We will be happy to mail your order for our flat rate of $9.99.
* Handmades, Bags, Clothing 30% off
* Notions, thread, patterns, trims & kits 40% off
* Scrap Paks 50% off

* Sale now through October 6 only!

 
We are selling some of our furniture/fixtures and class supplies as well, so if you’re in the neighborhood – stop in! You’ll find some funky stuff! We will be at this location through October 6, then packing for the move.

 

Everything Grows

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Lemons still on our tree

The best thing about New Orleans is that everything grows. The worst thing about New Orleans is that everything grows. Given time, a tiny cat’s claw vine will take over anything in it’s way. It will even invade an attic if there is a crack in a window. It will grow underneath siding and emerge through a hundred-year-old wooden shutter, clinging to rusty hinges and reaching towards the sunlight.

Every year Robert makes preserved (salted) lemons. He squeezes the lemons, cuts them up, adds Kosher salt and seals this up in jars. After about ten days or so, the lemon juice becomes syrupy and the lemons become soft enough to mash. The juice has a distinctive rich lemony taste that adds deep flavor to anything – guacamole, soup, salads. We have several citrus trees in our yard. Our semi-tropical climate is conducive to thousands of plant species. Many we don’t want. Many we do.  Our grapefruit tree has its first 3 fruits that we are waiting to pick, as soon as the green disappears.

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Grapefruit, almost ready

There is an old storage shed in our backyard made from the original slabs of bargeboard in the walls of our house. Beside the shed grow invasive elephant ears and Mexican petunias. We dig them up month after month and they keep coming back. On the walls of this shed, the cat’s claw vine creeps up. At one time it covered the roof but we hired someone to pull it all down and dispose of it. But it comes back. Always. In dry climates I hear that the plant is propagated because it is drought tolerant and has pretty yellow flowers. Well, yes, it does. But it grows maybe a half-foot per day here in NOLA.

So how do we co-exist with things that grow and are valued elsewhere, but are hated here in our own back yard? I think of the cat’s claw vine like I do my husband’s cancer cells.

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Cat’s claw vine trying to take over our backyard shed

We tolerate them, but we try to live as if they are not there. We try to do what we can to eliminate them, and we hope what we do is good for us and for the “good” plants (and “good” cells). All we can do is try to keep these things under control so they do not smother out the good things in life.

We enjoy our fruits, and keep planting good things – like more orange trees, more herbs and veggies – the “good stuff”. Maybe the good stuff will outgrow the bad. We can only do what we can. We can only hope.

That’s what this Christmas season brings to me. Hope. Hope in the future. Hope in good health, good energy, good friends and

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Cat’s claw vine growing through our neighbor’s historic shutters. There’s no apparent origin – unless the vine is growing under the siding.

good fruits.

 

Little Boxes, Filled with … what?

A couple of months ago, my husband R. was diagnosed with Metastatic Carcinoma of Unknown Primary. At first we are numb. Walking around staring at each other, trying not to get teary-eyed, but doing it anyway. Now, a few weeks down the road on this new journey, we’ve moved into another phase. Not acceptance. It’s something else for me. R. has an “attitude of gratitude”, and I’m into some other twilight zone of feeling I have not quite owned up to. I’m dealing with this new circumstance as I deal with most others.

I’m making things, keeping my hands moving. Yes, I’m escaping in a sense. Sometimes escape and denial is necessary to get you through. I’m making tiny houses. What is a house but a place where a soul resides. Little doorways. When I’m stitching, I do not have to think so much about the fact that my husband will gradually disappear from this life. But all these thoughts jump back into my stitches. I pray for him to not have pain. I try not to think about how lonely I will be in the future in this house.
I try not to think a whole lot about what I’m doing and my mind can wander off down the endless avenues of my brain. Every stitch a prayer. Going down one way I think of the beauty of the fall season here in New Orleans, which is the cooler temps. Then my thoughts take off another way and wonder about that hurricane that is forming and heading our way.
But with each stitch, each pull of this deep purple thread tightening that little doorway, I am thinking of what these cancer cells are doing to my husband day by day. And that I can do nothing to stop them, nothing to stitch those cancer cells up in a little box and burn them – and my scissors cannot cut off their threads of multiplication. It’s going to be a long journey.  Over time, about twenty minutes into my little house, my brain settles into the rhythm of my stitching, and I am once again in a meditation zone. I’m not in charge. And every stitch is a prayer.