Often the treatment decisions when you get to stage IV seems more like art than science. In fact all along this road we've been faced with decisions based on percentages. That means most people have been helped by a certain regime but there are always doubts about the road not taken. Some promising advances just didn't work.
Luckily our land surveyor friend Nancy has sent a compass rose button to aid us.
It must be working because Karen is doing well the past several weeks. Good weeks have been so rare we're thanking our lucky stars and all the stars who have been keeping the good healing thoughts and vibes coming our way.
She been working with her physical therapist and has gained a bit of strength and weight back.
Our big test came last weekend when we drove an hour plus north to Smith College so we could see the Kathe Kollwitz (1867-1945) exhibition. Biggest trip since last fall. Long day but her energy level was great and we managed a side trip to one of Karen's favorite stores, Webs. Stocked up on a bit of yarn because knitting has become a good way to while away the time during chemo infusions.
Lovely buttons continue to find their way to our mail box so every day is filled with hope and hugs from around the world.
Thanks to all our friends.
Drip drip drip goes the docetaxel. Time in the infusion center is measured not in seconds, minutes or hours; instead it goes by in drips and milliliters.
The day isn't comfortable; some ill defined pain started acting up in Karen's back this morning. We add and adjust the pillows and adjust the recliner as we try to find an acceptable position. We see Dr. K today because Dr. Levy is on vacation. He's Dr. K because no one can pronounce Karthikeyan Kandavelou. He's personable and very thorough so we're happy. Actually we're happy with everyone here at the cancer center; after so much time here it's like having a second family. Today we're all Irish; sharing some green cake and listening to irish ballads on the sound system.
Family came to visit Karen this past weekend. Her aunt Georgia, cousin Eric and his wife Kerry spent Sunday with us. Some more buttons and homemade bread to brighten the day.
Another week where strength seems to be increasing rather than decreasing. The magic of the buttons must still be working. Got some lovely ones from Pat and Jon Breux. Jill Walker stopped by to sew some on and a hand (button) event from artist Bibiana Padilla Maltos.
We've got a week off from chemo coming up. Karen is on once a week for three weeks then off a week. We're trying to decide if she's strong enough for a trip somewhere....even an overnight somewhere would be a nice victory to begin spring with.
Bibiana's event score, photo by William Evertson
We're at the infusion center. Docetaxel is flowing into Karen's port. She's already had her steroid so only an hour to go.
Last weeks news was positive but what does that actually mean? A month or so when nothing was working then a pneumonia that meant a week in bed in the hospital left Karen very weak. We're waiting to see if the remaining pleurisy resolves or will she need another thoracentesis. Karen is still on oxygen but not when sitting or at rest.
The spirits are high but the body is weak.
Send in the visiting nurses, visiting OT's and PT's.
The house is already a beehive of activity; we've got workmen on the bathroom remodel. (Another week maybe) and now the home health care invasion.
I feel like I'm on a tv cop show and have jurisdictional issues....she's my patient damn it!
But it's all good; they're giving her exercises and self care tips. The overall effect is positive and Karen has some exercise goals and I already see improvement in her leg strength and hip flexibility.
The weather is fantastic for March; Karen and I do a stroll around the yard with her walker and oxygen. The crocuses are up, daffodils starting....life is sweet....the simple and ordinary regeneration of Spring makes me tear up.
We walk to the mailbox and find some magic waiting for us. Buttons have been arriving; Corrine and her friend Nancy send a package of them and a note with the story behind them. Corrine is just beginning breast cancer treatment herself so we can't believe she found the energy to do this.
Jonathan and Jennifer also sent a care package of buttons...all found buttons...orphans in need of a home.
Forever friends Jim and Mary send three large and elegant buttons.
We take a picture and hope the magic of the dream holds.
PET Scan week... positron emission tomography ......injecting a little bit of radioactive tracer to look for the tumors. This is the third one since the Stage IV diagnosis. A great test; perfect for learning whether a chemo drug is working.
Insurance doesn't like you to have too many of the costly tests.
For them it's a financial bottom line and for us the ultimate bottom line.
How much for one more hour together, one more day, week or month?
Luckily our Doctor is persuasive because we can't afford delay. We want to know whether we are wasting time on a chemo that isn't working....Time is not our friend; not on our side. I know I'm scared...these tests have not been kind to Karen. The many weeks of recovery from the bone breaks and pneumonia have sapped her. I'm not sure what's in Karen's mind; I don't ask .
We sit quietly in the exam room and hold hands.
Dr. Levy comes in. He's almost always on time. I think a lot about time. He doesn't waste much as he delivers Good News.
The cancer that lit up the last PETscan at the beginning of December is less active...significantly.
Karen cries, awkward hugs around the wheelchair and oxygen ensue. We didn't realize how badly we needed some good news. It's not a cure, but it's a reprieve. It's more days not less days.
We stop at the mailbox and find a button in the mail from a college friend....a large red button and a picture of a box of buttons handed down through generations of her family. We see the red button laying there; peeking out under the lid.
Anne wrote us a lovely note speaking of the buttons, accumulating them and finding new homes.
I think back to Karen's dream. "I've got a solution; a blanket....a blanket with buttons. That should work; what do you think?
Dreams are wondrous places where time has no meaning.
Anne's Button Box, photo by William Evertson
Since the title of the blog is A Blanket with Buttons it was only a matter of time before this lovely blanket appeared. The title refers to a dream Karen had for the "solution". She woke me and told me about her discovery then fell back asleep. A solution for what I never learned....perhaps the cure to her cancer.
We have many dear friends in Ithaca, NY where Karen and I met, fell in love and were married over 40 years ago. We have kept in touch with our college friends and every year on Labor Day we return for our own version of a class reunion. (We play croquet at night with flaming balls, but that is a post for another day)
This past weekend two of our Ithaca friends, Eileen and Andy, came for a "Karen" visit and to give me a bit of a respite, which I used to visit our son, Ian, in Boston.
They came bearing gifts.
A beautiful blanket with the corners and border filled with a lovely button assortment. Apparently Eileen and another friend, Charlie were discussing the blog and voila! The idea of bringing Karen's dream into the light was born.
Both of us are in awe, in tears and humbled as we see how wonderfully our lives have been enriched by our friends. Friends with whom we came of age together; friends we have shared so much with through the years.
Friends could find it difficult to confront the elephant in the room; instead they formed a sewing circle and put together a bit of magic to help Karen find that solution; that Blanket with Buttons that is the solution to healing, to cures, to difficult transitions.
Hugs to the Ithaca Sewing Circle...left to right..Eileen F, Randi B, Carol C and Barbara M. Not pictured but known by their buttons are Andy F, Erin F and Karen A.
Since it's arrival here in East Hampton a few more buttons have been added; Jimmy C visiting from Brooklyn and of course our Art Party crew, Nancy C, Teri P and Cynthia A.
I suspect as more friends visit we may have a new tradition of sewing buttons.
Button button who's got the button...Send us your magic healing button. (Karen Evertson 109 Hog Hill Rd. East Hampton, CT 064240
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.