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
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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 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 |
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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