Finished the last radiation treatment today. Ten treatments to the right hip. Karen hopefully will feel pain relief in the next week or two. Time will tell on this.
The New Tack now that the cancer is back is more systemic treatment, ie a new chemo drug. This time we'll be trying something called Gemzar. In this case we won't know if it's working until a few months down the road.
The radiation is effective for isolated tumors but Karen's cancer has spread to multiple areas so the best treatment is systemic.
Unfortunately a particular chemo sometimes loses it's effectiveness over time. Or the side-effects become too much. The last one gave us nine months...it was a good run.
The struggle continues and Karen continues to struggle. The summer is coming to an end and with it some fond memories of enjoying sweet little days at Rogers Lake. The idea of a hip replacement is on hold while we evaluate the radiation.
If there is a good outcome and she gets some relief perhaps we can travel to see some fall color. Small joys and things to look forward to are important. Even though we can't plan we still dream.
Photo - Karen Evertson - Sails - A tile mosaic collaboration by Karen and Bill
Just when we thought the ducks were back in their rows the PET scan shows renewed cancer growth. Asleep like Rip Van Winkle for the last eight months it's back. New activity in ribs and a lymph node in middle of chest and the hip.
Karen suspected. The hip problem; not healing fully from the break last winter seemed to indicate that something wasn't right.
She has started a series of radiation treatments. Hopefully they will reduce the pain and Karen can use the walker more as much of our travel is in the wheelchair
on a more positive note our trip to Ithaca went well and it was great to see so many friends. Cancer care certainly takes a village.
photo- Eileen Hagerty- Karen and friends
Finally got to consult with the Yale Orthopedic doctor specializing in both cancer and hip replacement. Wonder of wonders he suggests that we try radiation first.
Our radiologist was scheduled to begin that treatment regime on Karen's hip a month ago. Her regular Orthopedic doctor weighed in for more info first. He was worried that radiation while it may work against the tumors in the hip it slows healing of fractures.
August turned into a month of scheduling x-rays, MRI and PET scans, second opinions and waiting.
Now we're armed with Yale docs input. His opinion seems conservative enough. In fact, last December both hips had small fractures and the left was irradiated early on and healed enough so that it doesn't cause her pain. It's worth a try on the right.
Tomorrow we meet with our oncologist to review the hip recommendations and get his opinion on PET scan comparisons. The PET tells us how fast (or slow) the cancer advances and ultimately whether our treatment options have been working.
We did take a chance over Labor Day weekend and traveled to Ithaca for our annual visit with very dear friends from college. Our oncologist who very much values a balance of treatment and quality of life was a bit nervous about the possible recurrence of spontaneous bone breaks. Ultimately Karen wanted us to not worry about the worst that could happen but hope for the best. We had a lovely and memorable weekend. Our friends are some of the loveliest people anywhere.
Cancer support...it takes a village.
Photo - Eileen Haggerty - Karen and Louise Foster
Nothing moves at more than a snails pace in the world of doctor appointments during the summer. We had hoped to have an opinion on the potential hip replacement by now and the appointment isn't until next Tuesday (sept 6). Karen's pain has been increasing so this doesn't seem to be resolving on its own, leading us to assume the worst.
What that worst might be ranges from spontaneous breaks to full blown return of aggressive cancer. At least a PET scan is scheduled for tomorrow to learn how active the underlying cancer is, although we may not find the results of that until next week. The cancer has been very inactive for months now; the Taxol chemo working. Unfortunately the side effects have forced a halt to that therapy. So she's getting no treatment until the hip issue is resolved.
The only advice we have at present is to use extra care and don't place any weight on the hip until tests are back and treatment options sorted out. The same advice we've been following for over a month.
Our big quality of life decision this week is whether to travel five hours to Ithaca, NY for our annual reunion with college friends. Friends come from all over and we've managed to keep up the contact for 35+ years now. Karen is determined to go despite the risks of overdoing it. I'm nervous but equally determined to do whatever I can to help her do the things that make her happy and fulfilled. We know that we shouldn't constantly be guided by the worst that could happen, but it's difficult. Thank our lucky stars for great supportive friends.
Photo: William Evertson - Karen with Flower
We made it to our 41st anniversary this past August 16th. We celebrated by watching the Olympics, enjoying the day on our deck and a bit of Thai takeout. So simple yet for us very meaningful. Another year in the survivor column is a win.
On the other hand the MRI has been read and still there is uncertainty. It seems that the next step is a referral to orthopedic cancer specialists at Yale New Haven. A possible hip replacement is being considered.
We're getting to some very difficult decisions. Karen's hip is very fragile and in danger of fracture. This is mainly from the tumors although chemo may contribute to bone thinning as well.
Karen already has to be cautious with pressure to that area because of the pain and to protect against fracture.
A meeting with our oncologist is scheduled for Monday and his office is trying to get the next available appointment down at Yale.
How long until we have to make the very difficult decision whether to undergo a surgery is unknown.
Difficult days ahead no matter what.
Photo: Selfie on deck on the occasion of 41st anniversary
"...Take it"; so goes the Yogi Berra quote.
We realized yesterday how many decisions in this cancer treatment have been unanimous. That is until yesterday. We were all set to begin radiation on that painful hip I wrote about in the last post. But....there is suddenly some disagreement in the best course of action.
So an oncologist, a radiologist and an orthopedic surgeon walk into a bar.....if this wasn't painful for Karen I could almost see the humor in the way each speciality wants to address the situation.
Karen's orthopedic doctor was on vacation during last weeks x-rays and decision to radiate. Just before we were to start the radiation the Ortho returned and his read on the x-rays was that the hip pain was associated with an older fracture healing poorly and not any new involvement from a nearby tumor. He thought that radiation may even further slow the healing of the fracture.
Everything screeches to a halt and for an hour or so we are at this fork in the road without much agreement or guidance.
Don't have a medical problem in August is what we've gleaned from this situation, because now the radiologist is away and his associate is filling in.
The upshot is to kick the decision down the road and schedule a MRI. Still waiting for that to happen. More pain meds and stay off the hip seems to be our only option at present.
Concurrently Karen needs another thoracentesis. Her breathing has become more difficult over the last week and we've increased the O2 levels to make her comfortable. I'm starting to lose track; this is either number four or number five. This got scheduled right away; like tomorrow. Which is good because it means less time to become anxious. She hates this procedure with a passion. It's a bit like getting stabbed in the back and not being able to get the knife out.
Hopefully Karen's breathing will be easier while we are standing anxiously at the fork in the road with that damn knife in the back.
Photo: Cynthia Abraham - Karen and Bill at Rogers Lake
Damn hip is fracturing again. The slight nagging pain got to be enough of a problem to get it xrayed after this week's chemo. We barely got home when we got a call from our oncologist. Hairline fractures are showing up in Karen's right socket area. She's been spared spontaneous breaks for over six months. The combination of the chemo (Taxol) and Xgeva have been working.
Now, for some reason there is new uncertainty in our lives. Uncertainty is frightening. We don't know what the next steps will be; that is beyond referral to a specialist, and hints of surgeries to pre-empt a hip fracture.
Uncertain about the chemo; has it stopped working?
The uncertainty will probably go on for several weeks as appointments are scheduled, tests and imaging scheduled and read. It all moves like a glacier when you want speed, options, answers and relief.
Karen has been upbeat in general despite the dire nature of her diagnosis. The setbacks are expected but they seem to flair up just when we dare to think we might make plans for the future...even a month in the future.
The saddest thing is with each new uncertainty there is a point where we move from shock to profound sadness and all we can do is have a cry together. The tears flow and then we move on with life. We're already doing all we can do.
photo..stock image..just another place the cancer is destroying.
Another Thoracentesis; this makes number four. Two on the right lung and now two on the left. At least breathing becomes easier for a while. We had hopes that doing the procedure once on each lung would be enough. The fates say no and this seems to be a new normal to have fluid drained alternately from around each lung.
Karen has been an inspiration through every treatment thrown at her.
Some good things and some difficult things arise as the summer passes. We're spending time at the lake house trying to beat the heat. We've even been able to find a tube with a nice seat so that Karen can do a bit of floating.
The chemo has been taking it's toll yet it continues to slow the cancer's advance. We've decided (along with her oncologist) to cut back a little. We were on for an infusion once a week for three weeks and then a week off. The new schedule is two weeks on then a week off. It's a risk but calcium levels are low, blood pressure is low and fatigue is becoming more of a problem. Breathing is getting difficult again and we keep upping the supplemental oxygen levels. Probably fluid is building again around the lungs. Karen did an xray yesterday and we'll get the results Monday. Draining the fluid is an absolute nightmare of a procedure and she's had it done three times and probably this will be a fourth.
She continues to balance rest and doing the things that she's always loved.
Photo - Karen pruning a holly bush.
We haven't been on anything like a vacation since last fall. Since then we had the winter of bones breaking and chemo roulette as we waited to find something that would slow the cancer.
Finally this past week strength is up enough and we've been able to travel. At least a short trip (for us) to Block Island; a small island in Long Island Sound. A nice funky vacation destination that we've been visiting for a number of years so we can spend some quality time with our friends Eileen and Andy who have loaded their family into a van and ferried out there forever. Several other couple we know from Ithaca are also here for a few days of vacation so it's a bit of an annual tradition I'm glad we can still do.
This past Monday we also packed the van. Ours is filled with all the items we need for mobility; wheelchair, walker and cane as well as oxygen generator, regulators and oxygen tanks of various volume. Hats to protect sensitive bald scalps, enough sunblock for the entire island and a pharmacy to make even Hunter S. Thompson blink.
So what does cancer on vacation look like? Yesterday was typical. Karen lounged in the morning with our friends while I went for a bike ride. Karen decided that a hot fudge sundae would be a fine lunch and I don't argue. It was meant to be; there was an empty handicap parking spot on the main drag near the ice cream shop. After lunch we drive to the parking lot near the North Lighthouse point ourselves out to the Sound and take in the waves for a while and people watch as the cars, bikes and mopeds come and go. some decide the additional quarter mile walk to the lighthouse is not worth it and turn around.
It's been a long time since Karen has driven a car. She misses it because it represents the freedoms that the healthy enjoy without a second thought. She blames me and I suppose she's right because I discourage her. With all her meds I worry about reaction time. I ask her if she want to drive. Everything on the island is slow paced including the traffic. We change seats; raising the driver's seat as high as it will go. We cruise along at a stately 20mph, taking the backroads and little dirt roads. We end a dead end road with only a few hundred feet to a sand beach. I break out some folding chairs and we sit and watch the waves from a different direction as we contemplate Cancer on the beach,
Later that evening everyone comes to Eileen and Andy's rental house for supper.
Lovely summer days that should last forever.
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.