TheMetastatic breast cancer. It's still breast cancer but it's in the bones. That's what metastatic breast cancer does; it leaves the breast and settles elsewhere in the body. The bones are a favorite target; a very painful target that have been compromised by pathological breaks to her hip sockets, sternum and a rib. The good news is that they do seem to be healing.
Much of our day involves managing pain. Staying on schedule with pain meds is a big part of it but other aids to mobility add to Karen's comfort.
Around the house Karen uses a walker although she'd really like to get back to a cane. (with some more healing time and some PT.)
For longer outings we're using the wheelchair. Climbing stairs is easier now that we had a stair climber installed. Karen enjoys the view into the backyard from the second floor. Also new since our return from the hospital is an oxygen generator. Karen is still getting used to the trailing hoses. We're not sure if this is permanent; the doctors are hoping that the lungs continue to clear. To help this process Karen works on lung capacity with a small breathing device and we check her oxygen levels with our new O2 sensor that fits on a finger.
Finally for sleeping we just got a memory foam wedge system from a company called Relax the Back.
We also invested in a Stair Trac machine with caterpillar treads that can hook to the wheelchair and power up steps.
It's a whole new world but we're getting plenty of support from the cancer center to make our house as comfortable and handicap accessible as possible.
The Wheelchair, photo by William Evertson
After a week in the hospital with pneumonia Karen is home. We get to snuggle again and I'm convinced that's the best medicine.
She went through two thoracentesis' for fluid removal from around each lung. The intravenous fluids, antibiotics, x-rays, sonograms, pain management and the intrusive hustle and bustle of hospital life is behind us for now. It was scary but the ER and hospital was the right call.
Karen will need oxygen for the time being. The pneumonia left her lungs in bad shape. Plus her broken sternum makes drawing a full breath difficult.
We had a visiting nurse stop by today for a follow up and we will have at least one home nurse visit a week for the foreseeable future. An occupational and physical therapist will also be coming by for evaluation and treatments.
The past week left Karen weak and discouraged but her attitude is starting to rebound now that she's home. She appreciates how much credit everyone gives her for her strength and her struggle. We talked last night about those type of characterizations and can't decide about the nobility that words like struggle suggests....sometimes it just feels like a blindfolded slog through a damn swamp.
Chemo infusions most likely won't resume until Karen gains more strength. Personally I'm hoping for a quiet no drama week of recovery where I can just deliver the hugs and chicken soup.
Selfie of Karen and Bill at home...."Our version of Bed In for Peace"
I know Karen's feeling better when she starts sending texts to her friend Teri plotting to sneak her out of the hospital. Like any good accomplice, Teri offers to bring in a gorilla suit as a disguise....because "who's going to stop a gorilla?"
Karen's doc caught wind of the plot and suggested where she could find a nurse uniform that might attract less attention.
He would like to keep her at least another day to perform a second thoracentesis, which is a procedure to remove fluid from the space between the lining of the outside of the lungs and the wall of the chest. This was performed on the right lung on Wednesday and her breathing has improved.
A couple of other gifts from or Ithaca friends brightened her stay; a heart garland from Carol C. and some ninja erasers from Karen A. to erase "bad things".
The discharge plan is to drain the chest today, monitor her oxygen for about 24 hours while continuing the intravenous antibiotic. It's too early to know how this affects her chemo regime.
I may be able to bring her home on Saturday...the sooner the better. I'm not saying she isn't getting great care but I do think I have become a pretty good nurse over the last couple of years.
Goodies from Ithaca, photo by William Evertson
I don't know how patients without an advocate manage their hospital stays. Karen came in sick and disoriented plus she's a cancer patient with a variety of medications and a complex medical history and at every step to both the ER and Hospital admittance someone is asking her questions that are hard to answer for the perfectly healthy.
We do physical exams and blood work weekly to stay on top of the changes that the chemo is producing in the body and then modifying medication regimes. There's enough trial and error to make cancer treatment part art. (or witchcraft?)
Our doctor (whom we love) is very proactive concerning the two biggest problems we face in palliative cancer care; pain and nausea. He tries to prescribe pain meds potent enough and on a schedule to prevent the pain from gaining the upper hand. The pain can become like a wildfire out of control unless treated vigorously at the onset. The same with nausea.
Despite all the medical records input it sure seemed like every shift at the hospital wanted to treat both the pain and nausea differently. This was especially true with the meds that the pharmacy label indicates as "if needed" or "as needed". Trying to get those "as needed" in a timely fashion seemed to mean different things to different people.
I've finally met all the aids, nurses and doctors from all three shifts and at last we're on the same page concerning the schedule and dose of the ongoing meds.
A procedure to drain fluid from around a lung is scheduled for tomorrow and then several more days of antibiotics ahead.
If Needed Medicine Bottle, photo by William Evertson
The new normal is a lesson in uncertainty. Today may be similar to yesterday or different from any days I've experienced since this cancer began. Plans are so often thwarted that I wonder; why make plans? Perhaps that is some type of zen koan that I can't quite fathom.
Thursday was chemo day and all was well, as was Friday; we were looking forward to celebrating Valentines Day on Sunday with friends.
Instead I've summoned the EMT's and ambulance.
Karen just won't wake up.
She's been tapering off a medication that was fatiguing her more than helping but this seems profoundly different. I had trouble waking her with the 2am and 6am pain meds. I let her sleep; this happens sometimes. I try to wake her at 9:30 for some water; she has a sip or two and wants to sleep more. At noon I try again and she wont wake; her eyes partially open, her breathing is becoming labored.
I pick up the phone and place the call to 911.
I call our friends Cynthia and Teri..I pack a bag with her meds, treatment synopsis, living will and wait for the emergency workers.
I'm not sure why there are four of them; The first two are listening and understanding the complexity of the situation. The cop and the two late comers are just in the way. My biggest fear is by rushing they are going to break more bones. They slow down and we gently move her from upstairs into the ambulance.
Karen's not oriented; doesn't know where she is, who she is or what's happening. This plays out several more times with various nurses and doctors throughout the day.
I'm not sure what was going through my mind. It was going to some dark places given our luck with this cancer.
Blood and urine samples were rushed to the lab. Bearing in mind that rush still means hours of uncertainty. In the meantime she was so dehydrated from such long periods asleep she received two units of saline. She also had a fever I didn't pick up on.
Tests came back positive for a pneumonia and antibiotics were started.
I was never so happy to hear a bad diagnosis as this. It is something that can be fixed. We haven't heard that in quite a while. Karen has been admitted to Middlesex Hospital and is resting quietly. She's already much improved, alert and oriented. Profound thanks to Teri, Flip, Cynthia and Roger for helping us through this.
Karen should be released in a couple of days.
Frans Masereel - Passionate Journey
Karen's dreams continue. It's about 2:am, she's tapping me awake.
"I'm sorry", she says, "but you have cancer too."
I know she's asleep and won't remember this in the morning.
She continues, "don't worry too much; it's the Blue kind."
And.... she doesn't remember when I ask her; she's horrified that she'd dream of something like that. As if she can direct her subconscious.
She doesn't know that I've thought something very similar. I've thought that this cancer is killing us both. As sure as this impersonal beast is eroding her bones it has shifted and cracked my essence.
At times over the past several months I've been hardly able to recognize myself; the dark moods, the feeling of powerlessness, frustration, anger and guilt over my own health.
Even in her sleep Karen works through powerful truths: I've got the Blue cancer. It's the kind that the caregivers get. I also know that as much as she may need my help, she wishes more than anything I continue to work on my "Blue cure".
Kuniyoshi from Warriors and Legends
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
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
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.