I watch as Karen looks at this picture of us. It's recent, fairly recent I think. I try to place it. Was it taken before the original cancer diagnosis or was it after the treatments but before the return and the Stage 4 diagnosis? I don't ask her what she's seeing because I think I know. Cancer isn't a beauty treatment. It robs us of so much of that healthy appearance we prefer to present to the world. I've come to realize that all the beautiful warrior pictures of women battling breast cancer are a certain type of fiction. Yes, we like to have a positive mental attitude because that's half the battle. But as we sit in the waiting rooms and look at the cancer magazines I don't see stage 4 as often. There's the hair loss, again. The height loss, dry skin, weeping eyes, lack of.....well I could go on and but lamenting lost things won't help. I hope she knows I see her just like this picture. Perhaps it's a trick I've taught myself as part of my coping or an illusion or not what she sees but she'll never stop being beautiful.
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Karen didn't do her chemo session today. The bloodwork came in ok but her blood pressure was low and she just didn't feel up for it. Tired and poisoned. The chemo is keeping the cancer down but it's tough love. Poison. We wish it wasn't so. We have to feel our way to a balance on the harsh meds and treatment regimes. Moving from three weeks on and one week off to two on one off for a bit. Karen's body needs more recovery. This is a tricky balancing act. Eyes that constantly tear. Another side effect. Not as bad as the breathing problems but another damn nuisance. We visited an eye doctor after the oncologist today. We found out that Karen's tears are actually a symptom of dry eyes. Tears have three layers and the chemo is probably disrupting the lipid layer. All this to say some more meds to add to the daily regime. Every different specialist wants to know what medications Karen takes. We have a print out a mile long. I hand it to the receptionists; It takes them a long time to enter them into the computer. I could recite them, but that takes a long time too. I like to know what they are, what they do and what the side effects are. I feel like I'm studying for a medical degree. Last week I wrote about breathing problems. They're still with us, but a portable generator is in the works after being tested to see if she can manage a "pulse" type regulator. Apparently, she can, although it take very purposeful breathing to operate. Thankfully it is only needed for situations where portability is needed. Photo - Seems like Karen's medication list is this long Success on the thoracentesis. That got rid of the fluid around the right lung. Karen's breathing is much improved and oxygen numbers have gotten back into the 90's while resting. That's a good thing because using supplemental oxygen is a royal pain. In fact after we left the hospital we didn't realize for over 24 hours that one of the hospital aids turned her flow down to zero instead of turning the tank off. This happened when they put her on the hospital O2. Later, Karen was using the tank but the gauge never moved. It took me longer than I want to admit to discover this. I thought we had a faulty tank but finally realized what happened. Luckily the procedure worked and her O2 level didn't fall too far. I try to stay with her during procedures to watch out for this kind of thing but a sometimes a nurse or aids will be equally equally insistent that I wait in the "waiting room". Sigh.... Staying on top of this as best as I can. We've had a home oxygen concentrator for a few months and it works well but you are attached to a 50 foot tube that might as well be a leash. Our portable oxygen comes in bottles. They get delivered weekly and we call in how many we estimate we'll need during the week. The oxygen company is difficult to work with. Often missing their deliveries or not supplying enough tanks. Constant calls to complain adds to our stress every week. Our oncologist's office is working with them to get Karen a portable generator instead instead of the bottles. All our complaints this week seem to revolve around oxygen. Except for breathing easy, we did ok. Photo - 12 hours of oxygen 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 From The Second Coming by Yeats - Things fall apart; the centre cannot hold; Mere anarchy is loosed upon the world, The blood-dimmed tide is loosed, and everywhere The ceremony of innocence is drowned; The cancer seems to have backed off a bit but we're not so innocent to think that it has stopped. Slowed down or gone into remission? We don't know and won't know until the next PET scan which we'll schedule after the next full round of chemo. We're optimistic that things are holding for the time being which gives Karen's body a chance to recover some strength. It's certainly bent her, compressed vertebrae and even broken her bones but it hasn't defeated her spirit. She fights the decline with her physical therapy, nutrition and plans for the future. Our oncologist, Dr. Levy, always makes a point of asking what activities we have planned; wanting us to accomplish all that we can. Last Thursday Karen said she'd like a trip to Scotland but bucket lists are sometimes wishful thinking. We made do with a day trip to the New Britain Museum of American Art. One step at a time; last month she was in her wheelchair, still nursing broken hip sockets. Now she's back to using canes. Scotland? She amazes and surprises me everyday..... who knows??? The buttons continue to come in....from near and far....so many people sending healing thoughts....It's helping....Thank you everyone! Photo: From Nancy and Walter Squier - A blanket with a button flower border, a bouquet and candy! Usually I've been keeping friends and family updated and writing this blog to that end as well. It's all about conserving Karen's energy because even responding to email and text can be taxing. Especially since one of the side effects of the current chemo (that otherwise is doing remarkably well) is chemo brain. Chemo brain is difficulty concentrating on a single task, Problems with short-term memory; forgetting details of recent events, fumbling for the right word or phrase and feeling mentally “slower” than usual. Karen continues to surprise me and has begun making longer texts to friends who ask how she's doing. This is one of her latest. Things are going very well. I am using a one cane now and only using oxygen at night or when I exercise. The therapists - physical and occupational have discharged me. And chemo seems to be doing fine. I have little nausea and md wants me to gain about 5 lbs. I did lose almost 5 inches in height!!! Look really odd but that's ok. Since all in all I am very well and happy. And when she's happy I'm happy! The photo on this post is a shot of a shadow box Karen made at our latest art party. It's a swimmer...swimming through the stars.
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. |
AuthorWilliam and Karen - Karen and I have been married for 41 years. Karen's breast cancer has reached stage 4. This is what happens next. Archives
May 2017
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