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
We made it! Climbed that Everest and got ourselves all the way to North Adams and MassMoCA. As I wrote in the last post we've tried a couple of times and our plans were foiled. Third time turns out to be the charm. That morning was a bit touch and go. Karen's sleep cycle has been completely screwed up. We don't know what is causing it; whether the chemo, other medications or the cancer. Or a combination of all.
In any case we arrived by early afternoon. We enjoyed the art and especially the repurposed industrial complex that houses MassMoCA. The Nick Cave football field size exhibition room was an overwhelming immersive experience.
Every time we're able to get out for something besides treatment is something of a victory. We followed that museum trip up the next day with a trip to the supermarket. Still hard, but we fight the small and the large.
Frankly though I want to scream that it shouldn't be this hard to enjoy something as simple as a trip to a museum.
It's a fight, a hard fight.
Photo - William Evertson - Karen and William at MassMoCA in Nick Cave room
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.