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.
I watch as Karen looks at this picture of us. It's recent, fairly recent I think. I try to place it. Was it taken before the original cancer diagnosis or was it after the treatments but before the return and the Stage 4 diagnosis?
I don't ask her what she's seeing because I think I know. Cancer isn't a beauty treatment.
It robs us of so much of that healthy appearance we prefer to present to the world.
I've come to realize that all the beautiful warrior pictures of women battling breast cancer are a certain type of fiction. Yes, we like to have a positive mental attitude because that's half the battle. But as we sit in the waiting rooms and look at the cancer magazines I don't see stage 4 as often.
There's the hair loss, again. The height loss, dry skin, weeping eyes, lack of.....well I could go on and but lamenting lost things won't help.
I hope she knows I see her just like this picture.
Perhaps it's a trick I've taught myself as part of my coping or an illusion or not what she sees but she'll never stop being beautiful.
Karen didn't do her chemo session today. The bloodwork came in ok but her blood pressure was low and she just didn't feel up for it. Tired and poisoned. The chemo is keeping the cancer down but it's tough love. Poison. We wish it wasn't so. We have to feel our way to a balance on the harsh meds and treatment regimes. Moving from three weeks on and one week off to two on one off for a bit. Karen's body needs more recovery. This is a tricky balancing act.
Eyes that constantly tear. Another side effect. Not as bad as the breathing problems but another damn nuisance. We visited an eye doctor after the oncologist today. We found out that Karen's tears are actually a symptom of dry eyes. Tears have three layers and the chemo is probably disrupting the lipid layer. All this to say some more meds to add to the daily regime.
Every different specialist wants to know what medications Karen takes. We have a print out a mile long. I hand it to the receptionists; It takes them a long time to enter them into the computer. I could recite them, but that takes a long time too. I like to know what they are, what they do and what the side effects are. I feel like I'm studying for a medical degree.
Last week I wrote about breathing problems. They're still with us, but a portable generator is in the works after being tested to see if she can manage a "pulse" type regulator. Apparently, she can, although it take very purposeful breathing to operate. Thankfully it is only needed for situations where portability is needed.
Photo - Seems like Karen's medication list is this long
Success on the thoracentesis. That got rid of the fluid around the right lung. Karen's breathing is much improved and oxygen numbers have gotten back into the 90's while resting. That's a good thing because using supplemental oxygen is a royal pain. In fact after we left the hospital we didn't realize for over 24 hours that one of the hospital aids turned her flow down to zero instead of turning the tank off. This happened when they put her on the hospital O2. Later, Karen was using the tank but the gauge never moved. It took me longer than I want to admit to discover this. I thought we had a faulty tank but finally realized what happened. Luckily the procedure worked and her O2 level didn't fall too far.
I try to stay with her during procedures to watch out for this kind of thing but a sometimes a nurse or aids will be equally equally insistent that I wait in the "waiting room".
Sigh.... Staying on top of this as best as I can.
We've had a home oxygen concentrator for a few months and it works well but you are attached to a 50 foot tube that might as well be a leash. Our portable oxygen comes in bottles. They get delivered weekly and we call in how many we estimate we'll need during the week. The oxygen company is difficult to work with. Often missing their deliveries or not supplying enough tanks. Constant calls to complain adds to our stress every week. Our oncologist's office is working with them to get Karen a portable generator instead instead of the bottles.
All our complaints this week seem to revolve around oxygen. Except for breathing easy, we did ok.
Photo - 12 hours of oxygen
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.