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
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.