Birds of a Feather
Some things don't change very much. The uncertainity of various treatments; managing pain and managing side effects. Another week, another round of chemo.
Plus we try to find time for both distractions and Karen's work on putting affairs in order. This last item is something I've felt uncomfortable with but someday I'll appreciate the effort. It's all sad stuff; we didn't expect to spend Karen's retirement picking cemetary plots. Damn that term; "putting affairs in order", its not like we've given up. Rambling this week because....well... stress.....nerves....almost time for a PET scan to tell whether the gemzar is actually working. Maybe we'll know in time for Christmas.
Through my study and love of Japanese woodblock printing I find myself thinking about Buddhist teachings. The four noble truths concern managing our suffering. The Buddha would love our friends. I know many weeks I've mentioned the importance of friends in managing suffering. They are crucial and I'm beginging to think they are better medicine than the surgery, radiation and chemo put together.
It's a much different holiday season this year; Karen is less mobil and in much more pain from the spread of the cancer. Our art party friends Teri and Flip, Cynthia and Roger and Nancy and Lance continue to come up with fellowship, support and good times that helps us cope with the loss of mobility.
We just had another of our art parties where we made some paper mache birds. It's wonderfully odd how these days we can make use of third grade crafts to distract and fill our hearts and minds with the joy of simplicity.
Photo - William Evertson - Karen and Bill with their paper mache love birds
Thanks for Asking
I was listening to a new program on NPR called Terrible, Thanks for Asking. It combined some sad circumstances, stories, wisdom and some humor and it seemed to speak to me this holiday season. We've been blessed with friends who have shared their concern and love during Karen's cancer. I don't know how people go through this without a village of support, yet I know there are those that do.
Still after three years when people ask how I am doing I usually answer "fine" or I'm doing "ok". I say that because I think I'm used to thinking of that question as being one of those pro forma questions not needing more of an answer. I decided to give myself permission to steal that phrase.
Things aren't "ok"; not emergency bad but much of our days revolve around managing pain. I hate to see Karen in pain.
Distractions are good and this was a good week for distractions. We had visits from Cam and Penny Boyce last Tuesday, who stopped off on their way to Lowell, MA. We had a wonderful Thanksgiving with at K's brothers house. Our sister-in-law Tammy outdid herself once again. Cynthia Abraham brought her family for a lovely whirlwind and yesterday the Foster clan dropped by as they made their way back home to Ithaca.
So the distractions are good, Karen's hip is bad, the effectiveness of the current chemo infusions is inconclusive. All around this seems to be the new normal.
So, the situation is terrible, but thanks for listening to the vent. We do appreciate the shoulder to bitch on.
Photo - William Evertson- Button puzzle from artist Joan Harrison in the mail with hand printed wrapper.
What About Tomorrow
We title this, "what about tomorrow" because it hasn't been a terrific week. Small things were in Karen's favor. A follow up MRI of the skull indicated that this particular cancer site hasn't spread to the brain. That was about the highpoint of the week (medically speaking).
Platelet count was too low for chemo so we went home with the understanding that she probably will only be able to do two weeks on and one week off. Our doctor was hoping for three treatments on and one week off.
After much back and forth and delays the cortisone injection was finally administered this past Friday. No discernible effect on Karen's pain level in the hip. It was worth a try and for such a minor procedure I'm still baffled why they didn't do this a month ago. In any case the pain is still there so increased pain meds is the only option unless it fractures further.
This week we'll try again for chemo...on Wednesday...a little Thanksgiving appetizer.
But things always have a bright side. Karen has friends visit, she has friends bring food, she has Teri and Flip bring her pizza, she has friends send cards, buttons and she even got a jigsaw puzzle from our Ithaca friend Carol. We got out to our friend Cynthia's annual bough and wreath making party on Saturday so in many ways we are blessed by our wealth of wonderful friends! Can we fit the word friend in a few more times?
Have a wonderful Thanksgiving everyone and give thanks for those good friends in our lives.
Photo - Cynthia Abraham - Karen and Bill with wreaths
Name and Date of Birth
This week Karen said her magic name and date a few dozen times. The techs need it before blood tests, before chemo, for billing, before images. This was another tough week that included a thoracentesis, chemo infusions plus we got set up with a home palliative care team including a nurse, a PT and a social worker. So a visit from each of these health care professionals. Damn, cancer is a full time job. So many appointments, people, and medicines that make our heads spin.
The palliative care team is new. We're trying to be proactive; hoping for the best as treatments are tried but being prepared for setbacks and contingencies. This home care team hopefully will give us support such that the emphasis is on "home care" rather than leaving us with decision making during an emergency.
Some light support now in the form of weekly nursing visit, some light PT to maintain strength and a social worker to help navigate the decision making of how and when to bring more help onboard.
On the bright side Karen continues to receive buttons....and as the social worker said; 'what a remarkable circle of friends!" She was amazed at the blankets, art, jars of buttons and even this blog.
Not surprisingly, the love and support of friends does make this horrible roll of the cosmic dice easier to endure. Thank you everyone.
Photo - William Evertson...Karen with latest package; this from Jennifer and Jonathan.
So It Goes
So it goes; another of those weeks where there is neither positive nor negative. Or perhaps like a physics experiment the outcome could simultaneously be either...or none.
Blood levels are good enough for more chemo...which may or may not be working.
Scheduled yet another thoracentesis....which may or may not bring easier breathing.
Scheduled yet another MRI; this time of the skull....which may or may not provide useful diagnostic information.
So it goes.
Karen is having some not very positive days and it's rubbing off.
But why do we have to be positive? Life is hard enough without trying to be those tough cheerful cancer survivors that show up on TV shows. We tear up and applaud their bravery.
So it goes.
In fact Karen's been focused on all the topics I want to avoid... making sure her affairs are in order, where to bury her, talking to our doctor about how and when to contact Hospice.
Thankfully the oncologist is still hopeful; not for a cure but for more time. I am hopeful for more positive time and a turn toward a lighter mental attitude this week.
So it goes.
Photo - Karen Evertson - a DIY prescription bottle of buttons from Eileen.
Going with the Flow....
...when it feels like we're stuck on the spin cycle.
This was supposed to be the off week from chemo and a chance for Karen's body to rest and recover. Instead the fluid around her lungs that had been relatively stable suddenly began to increase.
Another thoracentesis was scheduled for this past Friday. It was just in time because during the week Karen's breathing became more labored and we increased her oxygen saturation almost daily.
I don't think she's out of the woods yet because despite removing 1600 ml (about equal to a couple of bottles of wine) of fluid I haven't been able to reduce the O2 levels very much; certainly not as much as in the past.
To add to the oxygen anxiety this week our large stationary O2 generator suddenly quit working. I was trying to get some outside work done and luckily Karen's friend Jill was visiting and was able to let me know so we were able to get her on our portable O2 unit. The oxygen supplier was able to get us a replacement unit by the end of the day. While it was good they were quick to supply the replacement it's a bigger heavier machine.
The hip continues to be a problem. We are still waiting to have a cortisone injection to be scheduled.
Karen's been strong through all this and it has been a busy week. We are so grateful for the support of so many friends. Karen had several visits this week topped off with an art party/ birthday celebration. All that love and support is the best medicine!
Next chemo is Thursday so luckily she has a few days free of medical procedures to rest.
Photo - William Evertson - Karen working on her ostrich at the Art Party
Karen has gotten her third dose of Gemzar and we're still learning what the side effects might be. It makes me into that annoying nurse that's always asking "are you ok?" It seems that on the third day after her infusion she has mild flu-like symptoms. Temp up just slightly and blood pressure higher; enough to worry us but not enough to go to the ER. Luckily it doesn't last too long and seems to resolve by itself so far.
Unfortunately, this chemo is again producing fluid around the lung. Karen's oxygen needs have been increasing so we know it's time for a thoracentesis. This is an off week for chemo so they've scheduled one for this Friday provided her blood counts are ok.
So is this particular witches brew doing any good? We don't have a clue but at least she's getting systemic treatment again. We'll find out during the next PET scan, which is going to be a wait. she's going to have to go through a few rounds of this. Three weeks on and one week off for about three months is the ideal. One set down...two to go.
The hip is still a problem. The radiation didn't help with the pain and again we won't know if it killed any active cancer until the PET. We went back to Yale for a follow-up with the specialist and left with mixed feelings. Hip replacement doesn't seem to be a good option unless the cancer settles back down. The pain is limiting Karen's level of activity. The doc is conferring with our oncologist and we may at least have some cortisone injected into the hip joint to see if that would provide at least some relief even for a short period of time. It's not scheduled but then nothing seems to happen as fast as we'd like.
In the meantime we're enjoying the fall with some trips to the lake house to continue our fall cleanup and shutdown.
Photo- The witches brewing up the chemo?
Eye on the Prize
Karen was Ok'd for her second round of Gemzar this past Thursday. Her platelet count finally rebounded but it took a second week off after the first dose.
It's strong and we keep fingers crossed that it's doing a number on the cancer cells. It certainly knocked Karen out for most of the week following the first dose. It caused fatigue and low energy that took the extra time to stabilize.
We're trying to look on the bright side; in effect if it feels bad maybe it's bad on the cancer cells.
The hip seemed marginally better from the radiation but not where we had hoped it would be. We'll have a follow up visit with the hip specialist at Yale/New Haven this coming week.
Otherwise we stay positive with all sorts of support from friends. On Monday we had an impromptu Art Party with Cynthia, Roger, Lance and Nancy. We made some collages for a Day of the Dead exhibit in Santa Fe . On Wednesday our Ithaca friend David Cedarbaum stopped by for an overnight. As we often are reminded.....Cancer support takes a village.
Photo - William Evertson -Karen's Halloween socks with eyeballs
The Tough Row to Hoe
The first week of Gemzar was tough. Nausea went away but fatigue left Karen with zero energy for the week. Does the effectiveness of a chemo drug correlate with tough side effects? We don't know; and we won't know until a few months of it's use pass and we can do another scan. If that's even possible. Karen's platelet count was too low to do a treatment this week.
We'll give this another week; do another blood panel and see what happens.
In the good news department, on the sixth day after the Gemzar she felt well enough for an outing and we spent the afternoon at an art exhibit in West Hartford. It's frustrating to remember that last year we were able to do a six day swing through New England to catch all the fall colors. This year we seem to content ourselves with watching them change closer to home.
Still we have our fingers crossed because sometimes the first dose is the worst and the body is better able to tolerate it with time. Or perhaps it was too soon after her last bout of radiation treatments for the hip; which thankfully seems marginally better pain wise.
Photo. Karen E. - card from former workmates to brighten the spirit!
Hair Coming Back
Today Karen begins her new chemo drug, Gemzar. We once again pin hope to the fates and soldier on for the next several months before we find out if this will be the magic potion that slows the cancer.
The radiation she just finished last week was supposed to be a direct treatment to relieve the pain of specific tumors in her hip. Still waiting on that miracle to take effect.
She's discouraged and worn down this week. Fatigue from the radiation, learning that the cancer is spreading again and the hip pain that seems unshakable is overwhelming her usual positive attitude when beginning new treatment regimens.
On the positive side Karen has some of the side effects from the discontinued chemo beginning to resolve. Hair is starting to come in again, skin isn't breaking down and the neuropathy isn't advancing. If she could just get some relief from the hip the quality of life would be much improved. We're meeting again for a follow up with the hip specialist in mid October to revisit the hip replacement option.
Note: I wrote this while Karen was getting her infusion. Several hours later she's feeling nauseated despite the anti-nausea meds given with the Gemzar. They all have side effects but nausea isn't an auspicious sign to begin this cycle with.
Photo; William Evertson - Karen with Pipi Longstocking wig
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.