Despite what I said last post we do get anxious just before we get the results of PET scans. This time was no different because of the breathing problem. It could have meant that cancer had moved from bones to lungs.
Karen was very silent on the ride to the Cancer Center; there wasn't much I could say to lighten the mood. We rode quietly with our own thoughts.
Luckily the scan indicates that the cancer remains relatively inactive and hasn't continued its spread. Big sighs of relief in the exam room and hugs with Dr. Levy.
We've weathered another storm. It's odd not knowing whether we're drowning until after the fact.
Side effects could be side effects or they could be the cancer; we never know until the PET scans give us feedback. Karen has been getting one about every three months or the max our doc can get from the insurance co.
The breathing problems and need for so much supplemental oxygen still needs to be addressed. Today Karen is having another thoracentesis. (fluid removed from around her lung) which should provide some relief. It's painful and this will be the third time she's had to endure the procedure. Her anxiety is high just remembering the pain from the last one. It seems like a procedure that they should give a general for but for some reason they don't. We've only gotten vague reasons form the radiologists who perform the procedure, which leads us to believe it's a cost saving decision rather than a medical necessity.
All the treatments seem as bad as the disease these days.
Where and why is the fluid accumulating? We're not sure....the chemo treatment itself, or the steroid which give her some energy and appetite are possibilities but we can't really stop them because they are the finger in the dike.
Photo: William Evertson - waiting room sketch of us hiding from the storm under umbrellas
I have been growing a virtue. They say that Patience is a virtue. This is much harder than growing a plant, which I'm not that good at either. Growing my Patience is more like growing some wings.
Great patience, the patience of Job, patience that has been forged by looking after my lover's care for these past several years.
I've had to slow down...we both have. Everything takes longer...each meal, a trip to the mailbox, a shower, getting dressed in the morning. Things are postponed and deadlines are jettisoned because, well because this cancer is such a bitch.
So Karen and I both work on our patience. It's a different process for each of us. I don't know how she copes; she doesn't know how I cope, yet we both do.
Now we are waiting for the latest PET scan results. A PET scan is comprehensive and tells us how active the cancer is; and therefore how well the current treatment is slowing the Big C.
The scan was on Thursday; it's now Saturday night and we'll most probably hear the results this coming Thursday at our regular Oncology appointment.
Waiting for test results. Mostly waiting for the results to work their way through a cumbersome system that needs to make sure everything is billed correctly before we receive the results. Unfortunately, even this wait has become routine. No hanging by the phone. The results come when they come and it's always longer than one would expect.
The PET may explain why Karen's having more difficulty breathing lately. Needing more O2....not just at night or when exercising but almost constantly. Nothing exceptional showed up in an X-Ray but something is causing the breathing problem. Of course it could be chemo related or steroid levels or any of half a dozen variables aside from the cancer itself.
Another object lesson for patience. Is this a virtue? Or something we are adapting to, like background noise. Perhaps we'll find a cause for this one particular discomfort, perhaps not; perhaps it will be best if we don't find a cause. Not everything is fixable.
Photo: Alexander McQueen, Wings
The Uncertainty Principle states that the more precisely the position of some particle is determined, the less precisely its momentum can be known, and vice versa. In quantum mechanics and in cancer care some things can be known as other things are unknown.
The PET scan next week may help us cut through some uncertainty and decide on how well Karen’s current treatment is working. Right now I’m thinking how much uncertainty pervades our lives. We don’t know whether a treatment is slowing the cancer until months into the regime. It’s been an aggressive and difficult to treat cancer; defying the best and latest chemo and hormone treatments.
That’s why Karen is stage 4. The PET scan that confirmed stage 4 both removed uncertainty but added new variables with a new set of uncertainties. The options are few; slowing the growth, managing the pain and treating side effects. Karen has had a couple of months with no new broken bones, a recovery from a pneumonia and a new complacency as we enjoyed life abet more limited than our former always on the go life.
But.. the last couple of weeks we’ve noticed a lack of energy, poor appetite and a need for more supplemental oxygen. Here is where the uncertainty is so difficult. Is this the cancer rebounding or a reaction to some of the medicines to make the chemo more tolerable.
Maybe we’re better off with uncertainty? Sometimes ignorance is bliss? We just have to live with it for while we wait first for the test and then the results.
We once embraced uncertainty and just went with the flow but now uncertainty seems to be an unspoken but rather cruel side effect.
Photo: Buttons all the way from Australia from our artist friend Heather Matthew
Sometimes your reality is not what you imagined it to be. We sometimes make plans; sometimes we can't follow through. It's hard to remember all the cancelled plans and dreams of late. The movie, Bucket List, was fun but the actual following through with a bucket list is difficult. From the movies one would think that there is some force of will that can be summoned to overcome infirmity caused by the cancer. Sadly wanting to do something is thwarted by the damage that the cancer is causing.
Over the winter Karen had so many spontaneous broken bones that even routine doctor visits were challenging let alone skydiving or snorkeling with dolphins.
Lately though we are getting out and about more and learning how gratifying a trip to the supermarket can be, that the ability to enjoy mundane tasks are a gateway to our personal Zen.
So we are in a holding pattern lately. Karen feels good enough for light activity but not strong enough for a grand adventure. But the weather is improving and light activity means walks around the yard instead of walking around inside the house. This is fine and a gift we cherish. We're taking time to smell the roses this spring....well daffodils, hyacinth and primrose.
After today one more chemo then another week-long break then it's time for another PET scan to see what the cancer is doing. Hopefully it will still remain in hiding from all the hugs, wishes, love and those dreamy buttons.
Buttons continue to arrive almost daily. We've had to abandon trying to sew them onto the original blanket and instead have jars of them in a rotating display! Who knew how big and how much joy we've received from everyone!
Photo - A pair of birchbark buckets
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.