Cancer is confusing. Caregiving is confusing. Karen and I are both in unfamiliar territory.
Territories in which there are no maps. There are some guides that have traveled some of the terrain but this path is unique and as such we don't know what is around any damn corner.
Our new chemo drug is infused once a month and Karen has had one dose of it. She was supposed to get a second this past Thursday but a blizzard intervened. She's been rescheduled for this coming Tuesday.
It also meant that her visiting nurses did a phone in check up instead of the home visit.
It all happened to coincide with a series of odd symptoms that while not emergencies I'm nervous about. There is some nausea which shouldn't be present so far from the last treatment.
Is it the cancer? The fact that the liver is now involved?
Breathing is becoming a bit more difficult so it's time to schedule another thoracentesis and have some fluid drained off. Disappointing because that had stabilized slightly and she's gone bit longer without that particular treatment.
Finally her sleeping has gotten much worse over the last couple of weeks. Karen's had so much trouble getting to sleep that it was recommended that we add a sleep aid. We tried Lorazepam since she takes that as a sedative before thoracentesis.
I'm not sure if I'm doing the right thing but after a week I had to pull the plug on that drug. Karen was having a strange type of sleepwalking; getting out of bed and just moving to a different room insisting that it was morning. With her fragile hip I can't leave her on her own and yet I need sleep too.
Damn confusing. Eventually, Karen would sleep but it would be from about 4am to 10am. Additionally during the rest of the day residual symptoms of confusion and aphasia were present.
Doctor appointment and possible chemo this Tuesday and probably a home nurse follow up Wednesday or Thursday. I hope we can get some guidance although again this is unique and uncharted.
Usually I try to finish a post with some of the positive energy that's gotten us through the week but this really isn't the movies where cancer has a metaphysical silver lining.
I hope this week becomes less fraught with worry and Karens sleep can get back to normal.
I know I need some as well.
Photo - William Evertson - Selfie... Karen with Bill in car window
We made it! Climbed that Everest and got ourselves all the way to North Adams and MassMoCA. As I wrote in the last post we've tried a couple of times and our plans were foiled. Third time turns out to be the charm. That morning was a bit touch and go. Karen's sleep cycle has been completely screwed up. We don't know what is causing it; whether the chemo, other medications or the cancer. Or a combination of all.
In any case we arrived by early afternoon. We enjoyed the art and especially the repurposed industrial complex that houses MassMoCA. The Nick Cave football field size exhibition room was an overwhelming immersive experience.
Every time we're able to get out for something besides treatment is something of a victory. We followed that museum trip up the next day with a trip to the supermarket. Still hard, but we fight the small and the large.
Frankly though I want to scream that it shouldn't be this hard to enjoy something as simple as a trip to a museum.
It's a fight, a hard fight.
Photo - William Evertson - Karen and William at MassMoCA in Nick Cave room
The week has passed with no major victories or defeats on the cancer front. We had a follow up with Karen's doctor who specializes in hip replacements for cancer patients. In minor good news it seems that her hip fracture is finally healing. The downside is that the socket has healed such that we have the equivalent of a round peg in a square hole. So while Karen's danger of more spontaneous fracturing of the hip is diminished her mobility continues to be impacted as well painful.
We're back to the original dilemma that before the hip could be replaced Karen would have to go off chemo and continue to be off while the transplant heals.
We already wasted the last three months on a chemo that failed and have just started a new one. It takes about three months to find out if something is working. It's unfortunate but our decision is to kick this decision down the road for three months while we see if the new chemo kicks in.
Otherwise everything is looking ok. Karen's blood work following the new chemo has been fine, so she'll have her next infusion on Feb. 9th. So far the worst side effect has been a day of so of nausea following the infusion.
We actually have the rest of this week off from any doctors or treatments. We're going to try for a day trip. Probably to MassMoCA. We tried a year and a half ago on an autumn leaf trip but arrived on a Tuesday when it was closed. We tried last winter but Karen was hospitalized with pneumonia and we haven't had a good opportunity since. I know it sounds like a major expedition and in many ways for a stage 4 it is an Everest. We're stocked up with enough oxygen tanks.
Our fingers are crossed for weather and good health this Thursday.
Photo - Karen Evertson - Handmade love button pillow by Ramona Sablon
What makes a good day these days? Cancer does its best to make sure there is no such thing. It makes its presence known with pain, with nausea, with fatigue. It saps your energy in a myriad of ways, it fights your spirit, best intentions and your will.
Good days come when we find ways to overcome the odds. Days when we make the effort to get outside even though it might be easier to stay indoors. It's warm, the sun is peaking through the clouds so we assemble the oxygen equipment, the wheelchair and other transfer helps and the meds. We make it into the car and make the short drive to the little park on the banks of the Connecticut River. We reverse the operation and settle Karen into her wheelchair and enjoy the sun on our faces during a brief thirty minute walk. People are out with their partners, their kids and their dogs; it's reassuring to see the normal flow of peoples lives. For us this is a remarkable day. We are still together and still in love; even after all this damn cancer that is doing its best to separate us.
It has been a lovely weekend. Our dear friends Eileen and Andy Foster came from Ithaca, NY to visit for the weekend but they have just left to return home. They are some of our oldest and dearest friends. They came and made us feel like Queen and King for a day or so with their attentions. Yesterday they helped us get to the Wadsworth Atheneum to see an exhibit of Utamaro's woodcuts and paintings. A lovely afternoon and they helped us feel like we were in control not the damn cancer; that we could have normal days where we are in charge.
So, overall the chemo drug Doxil is treating Karen alright. There is fatigue and some nausea but most importantly her blood counts rebounded to normal levels which seems to indicate that she'll be able to have a second dose in February. The fear being that the drug is too damaging so that its efficacy can't be determined because the body can't tolerate it.
This week we'll make a trip to Yale for a follow up visit to the doctor that is advising us on Karen's hip. We don't expect much news there. Otherwise more follow up bloodwork to monitor the Doxil.
A fine weekend and a good day today but tonight Karen's fighting waves of nausea. I help as best as I can and write our post in between those waves.
And So It Goes.
Photo - William Evertson - Karen and Bill in Hurd Park
This past Thursday was the start of a new chemo infusion treatment; this time something called Doxil. It promises to be potent and time-released with only one infusion per month. Karen will need to return to the cancer center each week for blood work-ups to see how the white and red counts hold up to the chemo.
Earlier this week she had an echocardiogram to see if her heart was in good enough shape to take this drug. Apparently it is very hard on the heart and unlike some of the other drugs we've tried there is a maximum or toxic limit to how much of this a body can take. The Echo was fine so the strawberry colored Doxil was infused over an hour or so.
The promised side effects of fatigue and nausea started Friday night but have been diminishing since. So this next Thursday we'll just need bloodwork. We'll find out how good or bad her blood counts and immune system is holding up during prime cold and flu season.
Easy to catch a bug but tough to catch a break lately.
But on the support side of life our friends continue to be a source of love and distraction. We enjoyed company on Saturday for an Art Party themed on Year of the Rooster. These are evening full of art,love, and laughter.
Love our friends!
Photo - Cynthia Abraham - Karen and Bill at the Art Party
Karen's PET scan was bad news all around. The months on the chemo drug Gemzar didn't slow the cancer. Even a little. In fact the cancer has spread to lymph nodes around the lungs and worse still to the liver.
We began the new year hoping for a break or a plateau but for cancer hope is just another four letter word.
This is the first time a drug has had no effect although we did try a newly approved hormone that Karen's body couldn't tolerate. So as our doctor put it, we generally don't give up until we've had three failures unless we decide that the treatments are just too much to take.
Karen does not want to give in. Our next best option is a drug called Doxil. It's not something she can stay on long term because it also damages the heart.
Our first step is to have an echocardiogram to see if her heart is in good enough shape to begin this therapy.
Then we get to see which of the side effects we'll face; always the worst part of these finger in the dike treatments.
Yesterday was punch to the gut day and today is pick ourselves up and try to get on with living and love.
Photo - William Evertson - Detail from my woodcut in progress with Icarus falling.
,We celebrated the begining of 2017 with a kiss. Two lovers enoying another years worth of love and life. So precious and as we have discovered, so fragile. It's been a year of pateaus, sudden declines, hope, and tears.
One thing we've cherished during this trial of the spirit is how many friends are pulling, praying and cheerleading. We couldn't ask for better friends, several living close by and are able to stop in to keep up the healing vibrations, some farther away include us in their travels and others we see via correspondance or social media.
We love all of you and owe so much for your support that I'm sure it's more than we're ever able to repay.
As we begin this new year our first appointment happens to be one of the PET scans. I've described them before, but what they do is tell us how well the chemo has been working. Karen's been on a drug called Gemzar for about three months and now we'll learn if it was a good guess. If it's working we'll continue and if not there are still more drugs to try. Ironically or sadly, I'm not sure which, the ones with the most promise (even with genitic testing of this particular cancer) eventially stop working or sometimes don't work at all. It's all percentages; rolling the dice combined with science I suppose.
Overall, Karen is in good spirits. The week between Christmas and New Year was an off week from treatments. So Karen got to rest just in time to devote energy to family and friends and the holidays.
Both Christmas and New Years were wonderful and filled with friends and family. The greatest gifts of all.
Photo - Selfie - The New Year's Midnight Kiss
Thursdays have been our chemo day forever. We go to the cancer center and have some blood drawn then head upstairs to our oncologist ofices. We go over the blood work to see whether Karen's levels are up to treatment. Dr. Levy has always listened to our concerns and we've never felt rushed. We've always been partners in all the treatment options. We feel that he and the entire staff are part of our team. We're more than patients; we've become friends and partners in this journey.
Which brings us to cookies. After we meet with Dr. Levy we head down to the infusion area. Basicaly a large room with 15 or so recliners where the patients are made comfortable for the sometimes long process of receiving an IV drip with the chemotherapy drugs. So people pass the time naping, watching tv, reading and chatting with our nurses.
Our nursing staff has been wonderful. Always professional, attentive and personble. They always are interested in us as people and we love them in return. One of the lovely little quirks is that someone always seems to be dropping off some lovely munchies to share with the staff and all of us sitting for treatment or sitting for support.
So with our last chemo before the new year coming up we made cookies to share. We apprecate our caregivers. We'll hear a bit of grumbling about how their patients are trying to fatten them up but what the heck, we just gotta show our appreciation.
Photo - William Evertson - Karen with her cookies
People have off days, and even off weeks. Usually that means you're having a bad time of things; things aren't going your way or you're just having a run of bad luck. For us this means we're not having some medical intrusion that day or Karen gets a week off from chemo.
This wasn't one of those. This was a busy week with visits from our new pallative home care team which consisted of a RN, a physical therapist and a social worker. We had to have a blood draw and work up. We had our Oncologist visit plus two hour chemo session and capped it all off with another visit to the hospital for a thoracentesis.
This last one, the thoracentesis, is the procedure where a needle is guided via ultrasound to just outside the lung and fluid is removed. The fluid as it accumulates keeps squeezing the lung, making it harder and harder to catch a breath despite being on oxygen 24/7.
Definitly not an off week. Our next off week might be the week between Christmas and New Year. That would be a great present.
You would think with all the negative stuff that goes with cancer and treatments that I would always be very sympathetic. Karen's lack of mobility is frustrationg. She's always been active so finding fulfilling activities is challenging. She spends more time on social media; which has its plus's and minus's. The minus being her love hate relationship with Facebook. After a few months of her liking and sharing odd things as she purused Facebook signed in as me I signed her up for her own account...behind her back..without asking.
I think she'll eventially forgive me because frankly she doesn't have anyone else willing to deliver cookies and milk at a moments notice. In the meantime she's taking friend requests.
Photo - William Evertson - Holding Karen's hand; waiting for the thoracentesis.
This was a rest week from chemo. Letting those platlets recover for next weeks round.
Unfortunatly bad news is the new normal on the right hip; which not only hasn't healed but continues to be painful.
We've got five steps to the main level of the house that were getting progressivly more difficult for Karen. We'd navigate over to the top with Karen's walker and then slowly down a step at a time with a cane while juggling the portable oxygen. Getting out and about has been getting progressivly more difficult so we went ahead with a ramp this week.
Although these accomodations are necessary, make life easier and are welcome...... they are also milestones on the cancer journey. I think about how ramps go up and down. So simple yet like hope I only want the ramp to go up.
Canes, walkers, wheelchairs...it's not a great progression, but there it is .........and we'll make do, make accomodations and keep on getting about as best we can for as long as we can.
The ramp went in this week and we're still getting used to it. I think our best use of it happened today. I was spreading a bit of stone dust around the bottom when suddenly an eagle flew over the house and landed in a tree across the road from us. I went inside to show Karen but we couldn't get an angle to see it. We never would have been able to get outside quickly with walker and cane but with the wheelchair and ramp Karen got to see our eagle. We always meant to go on one of the riverwatch trips to see them but never got to it. Now one came off the river to visit us at home.
Milestones and little victorys.
Photo- William Evertson -Karen and her new ramp
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.