One thing that everyone in cancer treatment needs is a strong support network. We're facing an uncertain future and people are uncomfortable talking about cancer; especially to the person who has cancer. We understand that there is no right or wrong way to talk about advanced cancer. There have been so many great advances in breast cancer treatment that it's often difficult for friends to process why treatments haven't been successful for Karen. Unfortunately much more research still needs to be done. Luckily Karen has friends who have her back. Dropping by with homemade soup, sitting for a knit and bitch session, spending an afternoon watching sports, hugging and weeping together; it's all special and wonderful. Our Art Party friends have been real pillars of local support. Friends further afield have also made efforts to call, text, write and even visit. For me as a caregiver it has been a difficult learning curve as I discover how best to support Karen and what to delegate and what to let go of. Luckily our cancer center has social workers to work with spouses and caregivers. I'm still working through the complex emotions that go with being the spouse of a cancer patient, but I'm finally learning how to delegate, accept help and care for myself. Thank you from the bottom of our hearts to our friends both near and far for the love and support. Friends with Van Gogh Socks, photo by William Evertson
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We curse the universe but it doesn't do any good. Karen came back from a recent x-ray of her chest. We were trying to learn the cause of her chest discomfort. The technicians never say anything, we have to wait for the doctor to call with the results. Karen said that when they were alone with her they asked if she'd been in an accident or did someone hit her. I thought they looked at me a bit strangely; I suppose they have to ask. Her sternum was fractured, not badly but bad enough to make breathing hard and transitioning from a lying to a sitting position very painful despite aggressive pain management. There was also signs of a previous broken rib that was healing. I look up 'sternum fractures" and find they are usually caused by auto accidents, ie hitting the steering wheel when you aren't buckled in. With bone metastasis, or "bone mets," the bone is eroding and weakening. So we counter that by infusing bisphosphonates through her IV once a month with her chemo and calcium supplements at home. Two weeks ago Karen's right hip was giving her problems (when we say problems we usually mean pain that can't be controlled) An X-ray then an MRI confirmed a small fracture in the socket of her right hip joint. It also showed a small fracture to her left hip but it looks like it has been healing. The bone problems are difficult; they are painful and limit Karen's activity. Our Oncologist, Dr. Levy, whom we adore, is encouraging. As long as the bones are healing signs are pointing to the current round of chemo actually slowing the cancer. One other piece of good news last week was a x-ray to track the lung fluid showed that it hasn't returned to the left and is receding from the right. Finally some good news after two months of bad. Leonardo DaVinci, Anatomy Studies Set to begin the third month of chemo infusion this coming Thursday. This is our third change of treatment course since the stage 4 news. Since Karen has what's known as an estrogen positive cancer the first treatment involved a new and promising estrogen blocking hormone. Luckily we have good insurance because that meds' cost was about 10k per month. Unlucky because after two months her PET scan indicated it wasn't slowing the C and was only succeeding in depressing her white cell count. Next up was an oral chemo which worked fine for several months until late November. This wasn't unexpected. All bodies are different and some treatments work better than others (or not at all). December and January were difficult months. Making the decision to go back to a chemo infusion meant that she needed a surgery to implant a port. I remember what a milestone it was to have the last one removed after her initial treatments...a real celebration. Difficulty breathing led to the discovery of fluid around the lungs and draining of her left lung. And then her bones started breaking. Chemo Infusion, photo by William Evertson "Begin Anywhere" is a quote from John Cage that reminds me there is no point in waiting for inspiration or the right time. The important part of telling the tale of a journey is to simply begin. This is a blog about Karen's breast cancer; it was first diagnosed 9/23/13. Until then Karen had periodic biopsies but the results were always a diagnosis of " benign". That was then but now we are coming up on year since we found that we are not among the lucky 80% of breast cancer cures but instead Karen's cancer has metastasized to her bones. This is stage 4. So what does a blanket with buttons have to do with this cancer aside from the fact that our alternate title was "fuck this fucking cancer"? Side effects....The latest addition to Karen's medicine regime is Remeron which is usually used as an antidepressant but also has been approved for the off label use as an appetite stimulant. It's hard to keep your weight up when food doesn't taste right and you're fighting nausea. One of it's side effects is abnormal dreaming. It also makes you drowsy so it's taken at night. The second night Karen wakes me up with some emphatic slaps to the butt. "What..what!!" I mumble. Karen says, "I've got a solution; a blanket....a blanket with buttons. That should work; what do you think? That solves everything. Don't you think I'm smart? Her eyes are closed and I realize she's talking in her sleep but I look at her and say, "yes, yes you are smart...and kind..... and all types of wonderful. She's back to her dreams and I'll add this to my memories of our cancer journey. Begin Anywhere magnet, photo by William Evertson |
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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