I was listening to a new program on NPR called Terrible, Thanks for Asking. It combined some sad circumstances, stories, wisdom and some humor and it seemed to speak to me this holiday season. We've been blessed with friends who have shared their concern and love during Karen's cancer. I don't know how people go through this without a village of support, yet I know there are those that do.
Still after three years when people ask how I am doing I usually answer "fine" or I'm doing "ok". I say that because I think I'm used to thinking of that question as being one of those pro forma questions not needing more of an answer. I decided to give myself permission to steal that phrase.
Things aren't "ok"; not emergency bad but much of our days revolve around managing pain. I hate to see Karen in pain.
Distractions are good and this was a good week for distractions. We had visits from Cam and Penny Boyce last Tuesday, who stopped off on their way to Lowell, MA. We had a wonderful Thanksgiving with at K's brothers house. Our sister-in-law Tammy outdid herself once again. Cynthia Abraham brought her family for a lovely whirlwind and yesterday the Foster clan dropped by as they made their way back home to Ithaca.
So the distractions are good, Karen's hip is bad, the effectiveness of the current chemo infusions is inconclusive. All around this seems to be the new normal.
So, the situation is terrible, but thanks for listening to the vent. We do appreciate the shoulder to bitch on.
Photo - William Evertson- Button puzzle from artist Joan Harrison in the mail with hand printed wrapper.
We title this, "what about tomorrow" because it hasn't been a terrific week. Small things were in Karen's favor. A follow up MRI of the skull indicated that this particular cancer site hasn't spread to the brain. That was about the highpoint of the week (medically speaking).
Platelet count was too low for chemo so we went home with the understanding that she probably will only be able to do two weeks on and one week off. Our doctor was hoping for three treatments on and one week off.
After much back and forth and delays the cortisone injection was finally administered this past Friday. No discernible effect on Karen's pain level in the hip. It was worth a try and for such a minor procedure I'm still baffled why they didn't do this a month ago. In any case the pain is still there so increased pain meds is the only option unless it fractures further.
This week we'll try again for chemo...on Wednesday...a little Thanksgiving appetizer.
But things always have a bright side. Karen has friends visit, she has friends bring food, she has Teri and Flip bring her pizza, she has friends send cards, buttons and she even got a jigsaw puzzle from our Ithaca friend Carol. We got out to our friend Cynthia's annual bough and wreath making party on Saturday so in many ways we are blessed by our wealth of wonderful friends! Can we fit the word friend in a few more times?
Have a wonderful Thanksgiving everyone and give thanks for those good friends in our lives.
Photo - Cynthia Abraham - Karen and Bill with wreaths
This week Karen said her magic name and date a few dozen times. The techs need it before blood tests, before chemo, for billing, before images. This was another tough week that included a thoracentesis, chemo infusions plus we got set up with a home palliative care team including a nurse, a PT and a social worker. So a visit from each of these health care professionals. Damn, cancer is a full time job. So many appointments, people, and medicines that make our heads spin.
The palliative care team is new. We're trying to be proactive; hoping for the best as treatments are tried but being prepared for setbacks and contingencies. This home care team hopefully will give us support such that the emphasis is on "home care" rather than leaving us with decision making during an emergency.
Some light support now in the form of weekly nursing visit, some light PT to maintain strength and a social worker to help navigate the decision making of how and when to bring more help onboard.
On the bright side Karen continues to receive buttons....and as the social worker said; 'what a remarkable circle of friends!" She was amazed at the blankets, art, jars of buttons and even this blog.
Not surprisingly, the love and support of friends does make this horrible roll of the cosmic dice easier to endure. Thank you everyone.
Photo - William Evertson...Karen with latest package; this from Jennifer and Jonathan.
So it goes; another of those weeks where there is neither positive nor negative. Or perhaps like a physics experiment the outcome could simultaneously be either...or none.
Blood levels are good enough for more chemo...which may or may not be working.
Scheduled yet another thoracentesis....which may or may not bring easier breathing.
Scheduled yet another MRI; this time of the skull....which may or may not provide useful diagnostic information.
So it goes.
Karen is having some not very positive days and it's rubbing off.
But why do we have to be positive? Life is hard enough without trying to be those tough cheerful cancer survivors that show up on TV shows. We tear up and applaud their bravery.
So it goes.
In fact Karen's been focused on all the topics I want to avoid... making sure her affairs are in order, where to bury her, talking to our doctor about how and when to contact Hospice.
Thankfully the oncologist is still hopeful; not for a cure but for more time. I am hopeful for more positive time and a turn toward a lighter mental attitude this week.
So it goes.
Photo - Karen Evertson - a DIY prescription bottle of buttons from Eileen.
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.