Many of buttons that Karen received over the past years were once lost or separated from their garment. Someone found it and held onto it until they gave it to her.
We sometimes get lost. We lose our thread-like connection and fall away. Sometimes we decide to let ourselves fall away. Karen told me she was ready to fall away. She fought until she could no longer fight. She fought until those affairs were in order and the people she loved were less afraid.
The Fates were three sisters Their names were Clotho, the one who spins the thread of life; Lachesis, who draws the lots and determines how long one lives, by measuring the thread of life; and Atropos, the inevitable, she who cuts the thread of life with her shears.
Buttons and threads were the lovely metaphors that brought much joy to our days together as the cancer worked.
It never diminished her.
The next chapter is one where I and those that love her celebrate her life and her love of life.
A Celebration of Life is planned for May 27th at our East Hampton home. From 3:00 to 8:00pm we will gather to play games, make art and music, celebrate with stories of love and life.
Karen did. Even as chemo brain aphasia was fighting her ability to express herself. I knew she was writing but I couldn't read it until after he passed.
In her own words
I tried to do the best I could. Sometimes I succeeded, some of the times I failed, but I tried. I was born in 1952 and grew up outside of Schenectady N.Y. I was active in all sorts of outdoor activities; swimming, skiing, hiking and canoeing. After graduating from Schalmont High School I attended Ithaca College where I met my future husband William Evertson. Bill and I were married in 1975 in a simple ceremony on a farm in Ithaca. We lived in Delaware for two years while Bill worked on his MFA and I began my career as a social worker. After two years of school, teaching, work and travel we moved to New York City. In 1982 I received a Master of Social Work from Hunter College. I was hired after my social work training at the Metropolitan Center for Mental Health as the Administrative Director. In 1986 our son Ian was born and we moved to Connecticut where I had a job at Inter Community Mental Health Group as the Executive Director. After about ten years, I was recruited by the State of Connecticut to develop and run Western Connecticut Mental Health Network as the CEO. My last position before I retired was CEO at Capitol Region Mental Health Center in Hartford, Ct. I value the traits that I grew up with that were further engrained by my social work training; such as, kindness, compassion, treating people the way you want to be treated, helping those in need, honesty and equality. There are people who taught me of course. My father, Robert C Mackeown and mother Gary Wiggin Mackeown. My husband, William and son Ian. My brother, Douglas and his wife Tamzen, their children David and Caitlin. My aunt Georgia Clingen, her son Eric, his wife Kerry and their children Brian and Elaine. My father's sister, Dorothy Mackeown Jeroloman and her children, Charlie Jr, Amy and Robert C. Jeroloman. I have been blessed with very special friends who loved me, assisted me and cared for me. Since my diagnoses of breast cancer I welcomed the chance to say thank you to all the people who helped me along the way. They have laughed with me and taught me things so that I could have a wonderful happy life. I am blessed beyond measure by knowing all of you. If you think of me and would like to do something to honor my memory here are some suggestions. Volunteer at a school, library or art museum. Write a letter to someone and let them know they had a positive impact on your life. Make someone smile today if it is your power to do so. If you haven't educated yourself on global warming - start. If you haven't educated yourself on renewable energy sources - start. Turn off the electronics and take a kid out for ice cream and talk about their hopes and dreams. And finally as some have said, be kind to one another.
Like a freight train rolling down the tracks to an uncertain crossing the cancer is unstoppable. This was the weekend of the crash. Rising concern bordering on panic as symptoms spiraled out of my ability to keep Karen comfortable. Being a weekend it took forever to get any medical advice but finally our home hospice care supervisor recommended the ER. Perhaps I was only dealing with an infection.
If only; last year's scare was a pneumonia, very serious but Karen recovered. She was diminished by it and never was able to come off supplemental oxygen.
Still we had the most precious gift of all; more time.
Ultimately Karen was hospitalized on the palliative care floor of our local hospital. Karen's rejected further treatments this morning so we only made her comfortable with pain medications.
Last night I slept on a cot at her bedside.
We shared what was to be our last kiss.
Today she saw friends.
But today she also shut down. Mostly sleeping during the day.
I left to go home to freshen up. Our son Ian at her side. She woke up, took off her oxygen cannula. She wouldn't let him put it back. Minutes later she passed. Minutes later I arrived.
My lover has died.
I'm sure there is poetry that she brought Ian into the world and he held her hand as she passes to the next. I am sure there is power in her soul that she needed to pass to Ian. He and I will carry her memory forward.
Our friends have surrounded us and showered their love on us.
But one of the final chapters has been written.
This is the "what comes next"
I love her so much.
Photo - William Evertson - The Last Kiss
I left off with a sentence about soldiering on and that's still where we're at. The malaise continues and Karen is getting worn down from it. The hope is that this chemo is making the cancer even sicker. It's certainly been hard on Karen; her fatigue is bad, breathing is difficult, the appetite is gone and on top of all that...well, this list goes on and on.
I'm talking in circles. It seems like those old jungle movies where the quicksand is sucking you in. The struggle just seems to make things worse. On the other hand the struggle is all there is and on the other hand it's not my struggle and yet part of it is.
Some things take longer than we want and that's especially true of trying this third chemo and now the wait until the PET scan to see whether it was worth it.
But we're several weeks away from that. In the meantime that soldiering continues.
This past week we had several friends sit with Karen while I made a quick trip to Boston for an art opening where I have a piece. Strange how odd it feels to leave Karen for any reason. It was only six hours but I can't remember being away that long since this began. It was hard but confusing. Good for Karen who wants me to continue but hard on me who needs every minute.
We carry on.
Photo - Button mobile - a Eileen and Cynthia collaboration
Dictionary definition of malaise; a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify. Continued from last week. Karen's in the middle of something that's difficult to find solutions to. Apparently it's either/or. Either the chemo is making her sick or the chemo isn't working and the cancer is making her sick. I suppose she could be coming down with an illness but it seems like that would have manifested with a fever or some other symptom. Fatigue, insomnia, loss of appetite and difficulty breathing are present yet oxygen levels are good and no other symptoms such as fever are present. Nurses and Doctors all consulted. Tests administered.
Caregiver misgivings all around. I can't believe that I can't make her more comfortable although I understand that without a spouse or other home caregiver her life could be much harder.
We were interviewed on Friday about a piece of art we collaborated on that will be in an exhibit about cancer in April. One thing that Karen mentioned was how the cancer was working on us both . Differently, because hers is physical and mine is mental.
Perhaps this will pass; best case, it's a manifestation of the chemo working. PET scan coming up mid April so we'll just have soldier on until we learn more.
Photo - William Evertson - 2008 digital collage, "Malaise"
We passed a rare week. No procedures, no chemo, no doctor visits. Our PT and visiting nurse dropped by but other than that we spent it as normal healthy people do. What a nice feeling! So we filled it with some drives abouts. One drive-about was with one of those scooters at our local Stop and Shop. I imagine it was quite the sight. Karen's transfers out of the car and onto the machine plus hooking all the O2 tanks on was interesting but not as cute as seeing Karen drive off like a teenager who just got her driver's license. She got stuck a few time but other shoppers helped and lifted her machine around a few obstacles. Grocery shopping took twice as long but twice as fun....so thank those lucky stars for a sense of humor.
We ended our weekend with a visit from our bff's from Ithaca, Eileen and Andy! (and Otis the poodle) A lovely wonderful time. We did a drive to Lyme to show off the progress on the lake house bathroom remodel and later in the afternoon hosted an Art Party with East Hampton bff's!
Support is where it's at! Love all our friends!
Today (Sunday) Karen had a bit of a crash that worried me but after tracking the vitals for a few hours my best guess is that the excitement wore her down. She spiked her blood pressure but O2 seemed fine as well as her temperature. Finally she napped for several hours and perked up a bit. So I don't know what that was about; her insomnia triggering something, dehydration or just overtired from too much stimulation.
We've been cautious concerning energy levels but all is well now and it seems like the week's energy was well spent.
Photo - William Evertson - Karen and Eileen
Busy week. Thoracentesis happened on Tuesday and I wrote about that in the last post. I had hoped for a better breathing outcome than we've experienced. On her previous procedures we've been able to decrease the oxygen levels almost immediately and still maintain good O2 saturation. This time Karen didn't get the O2 boost but her breathing is a bit better. Not sure exactly what's going on; perhaps she'll need to have the right lung treated sooner rather than later. Never-ending string of so so outcomes lately.
Despite being cautioned to rest the day after the procedure we had to get out on Wednesday to get some bloodwork done before her Xgevia shot scheduled for Thursday. That's a once a month bone booster. The bloodwork was ok so Karen got the injection.
Just another week in the life of a cancer patient and her caregiver husband.
We're looking forward to spring and better weather. Karen's friend Teri has Karen thinking about day trips she would like to do that but might need extra caregiver set of hands to do.
We're also looking forward to opening the lake house for the summer. We made a trip down to Lyme to see how the bathroom renovation we contracted out is going. We're trying to make the downstairs bath a bit more handicap friendly.
Photo - William Evertson - Karen and Bill at Rogers Lake
Karen is still battling side effects. She still can't sleep. She's still with the bad hip and bone pain everywhere. I forget sometimes how much pain Karen struggles with on a daily basis. Even after all the painkillers there's always that underlying pain that doesn't quit.
I try to ignore how much caregiving numbs me. After a night of not sleeping because Karen isn't sleeping my patience reservoir is drained. Once upon a time when we were new parents we lived like this; bad, sleepless nights and zombie days. Our friend Teri noticed it the other day. The look of someone burning both ends of the candle. Besides caregiver I still have to take care of myself and get in a nap or some exercise or just the mountain of errands. I always mention how cancer needs a caring village and we are blessed with so many friends who have been attentive to all our healing needs. Teri came by yesterday to keep Karen company just so I could get away for the errands. Small things make a large difference.
It was thorcentesis day today so hopefully Karen's breathing will continue to improve. She had about 850 ml of fluid removed from around the left lung.
It must have been another bad and sleepless night that left me fuming first; by an orderly who wouldn't let me accompany Karen while she was to be changed to hospital johnny and their oxygen system. Usually if I'm nice but persistent it hasn't been a problem. I like to be there not only to help but to make sure everyone is gentle due to bones left extremely fragile from the cancer. After the procedure the recovery nurse was another authoritarian. It was past time for Karen to have some breakthrough pain meds which for the past five times the nurses have just asked me if I have her medication with me. Then I give it to her. This one wouldn't let me give it to her. She insisted on placing an order which had to be reviewed by a doctor (not even a doc involved with her procedure) and which finally arrived an hour later just as we were being discharged.
Argh..hospital stays and procedures can be good or bad depending on which people are there. Luckily our prep nurse who has been on duty during some of Karen's past procedures and the doc who also has done several of her procedures were great.
Photo- Teri Prestash - Karen and Bill with marbled paper from a recent Art Party
Swimming against the current seems to be our theme. The challenges increase as Karen's physical abilities struggle. Every week there is something new to compromise the will. Karen went through her second dose of the chemo Doxil last week. This is the first time we've had a treatment that could only be administered once a month. We're learning which side effects are going to affect Karen and how debilitating they might be. Sometimes treatments have stalled because of poor blood counts but so far this hasn't been the case. She is starting to suffer from mouth sores for the first time. These have been mentioned as a possibility with almost every treatment but never really presented as a major problem until now. So it was off to the drugstore for some special mouth rinses. She's also starting to show symptoms of hand/foot syndrome; a condition where the doxil breaks through capillaries and damages tissues especially in the hands and feet. So some ice, elevation and cream for now. We'll check with our visiting nurses tomorrow for further guidance and naturally at our Thursday appointment with our chemo doctor.
In positive news, we've been asked to contribute an art piece to a cancer related exhibition in Yellow Spring , Ohio during April. We collaborated on a shadowbox during one of our art parties that seems like a good fit. Swimming Across the Universe...Swimming with Cancer. A woman swimming through the starry night; through the stars themselves.
Photo - William Evertson - Shadowbox collaboration by Karen and William Evertson
Cancer is confusing. Caregiving is confusing. Karen and I are both in unfamiliar territory.
Territories in which there are no maps. There are some guides that have traveled some of the terrain but this path is unique and as such we don't know what is around any damn corner.
Our new chemo drug is infused once a month and Karen has had one dose of it. She was supposed to get a second this past Thursday but a blizzard intervened. She's been rescheduled for this coming Tuesday.
It also meant that her visiting nurses did a phone in check up instead of the home visit.
It all happened to coincide with a series of odd symptoms that while not emergencies I'm nervous about. There is some nausea which shouldn't be present so far from the last treatment.
Is it the cancer? The fact that the liver is now involved?
Breathing is becoming a bit more difficult so it's time to schedule another thoracentesis and have some fluid drained off. Disappointing because that had stabilized slightly and she's gone bit longer without that particular treatment.
Finally her sleeping has gotten much worse over the last couple of weeks. Karen's had so much trouble getting to sleep that it was recommended that we add a sleep aid. We tried Lorazepam since she takes that as a sedative before thoracentesis.
I'm not sure if I'm doing the right thing but after a week I had to pull the plug on that drug. Karen was having a strange type of sleepwalking; getting out of bed and just moving to a different room insisting that it was morning. With her fragile hip I can't leave her on her own and yet I need sleep too.
Damn confusing. Eventually, Karen would sleep but it would be from about 4am to 10am. Additionally during the rest of the day residual symptoms of confusion and aphasia were present.
Doctor appointment and possible chemo this Tuesday and probably a home nurse follow up Wednesday or Thursday. I hope we can get some guidance although again this is unique and uncharted.
Usually I try to finish a post with some of the positive energy that's gotten us through the week but this really isn't the movies where cancer has a metaphysical silver lining.
I hope this week becomes less fraught with worry and Karens sleep can get back to normal.
I know I need some as well.
Photo - William Evertson - Selfie... Karen with Bill in car window
William and Karen - Karen and I have been married for 41 years. Karen's breast cancer has reached stage 4. This is what happens next.