I’m struggling with a couple issues (actually, many issues but you don’t have time for all that so we’ll focus on two):  hope is what keeps me up at night AND cancer is like water on stone. Over time, it makes a mark on your psyche. It’s odd, really. When I talk to Ken, I am a cheerleader all the time. One day, he said “let’s make the assumption that I’ll be around for awhile.” And I said, “I’ve always assumed that.”

However, in the secret dark of night, where fear and hope battle, hope sometimes takes a beating, like last night. When I finally fell asleep a little before 4 this morning (and then slept through my alarm at 5, of course, meaning that all three people relying on me today were late) I dreamed that I was following Ken into chemo, down a long hallway with many turns and doors. Of course, I lost him and was running along it, calling to him. I kept bumping into people and ending up in weird places (the lobby of my old job, a locker room(?), my son’s school) but I woke up with a start at 5:30 without finding Ken. Who won that battle – hope or fear?

So, ANYWAY, I promised to (become) relentlessly cheerful in this post. So, first a little story:  I love to dance along to weird music in retail establishments. (The first step in getting help is admitting you have a problem, right?!) Two of my children play, er … dance?, along. So, anyway, one day, Haley and I are in some (nearly empty) upscale store in the Shadyside neighborhood of Pittsburgh, dancing (we’re not talking about a little head bop now and again, we’re talking full-on, arms waving, jumping, the Peanuts kids rocking out) and then stopping suddenly to shop. We’re laughing. Haley has a gift card and finally picks out what she wants so we head to the back of the store to pay. We’re smiling as we step up to the counter and the sales rep dances over to us — seriously — totally playing off our silly moves and laughing as we laugh.

We got some good news from the radiation oncologist last week. He said that the primary tumor, at least, seems to be mostly just scar tissue, that the 1-2 punch of chemo and radiation may have done their job. Ken has a PET/CT scan scheduled (finally, we got approval from the insurance company!), so we’ll get details later this week and maybe an explanation for the swelling and back pain.

There was a lot more to our discussion with the radiation oncologist — the PET/CT, chemo, additional radiation, the surgeon’s recommendation. The doctor emphasized that Ken needs to get as much light exercise as he can tolerate. That’s a little harder “done than said.” Ken’s still healing from radiation (very slowly now that he’s on chemo again) and his leg is still swollen to tree-trunk proportions.

Today was another long chemo day. We started the morning with a blood draw and an appointment with the oncologist. The doctor wants us to talk with another surgeon, one who prefers surgical solutions. The oncologist said Ken needs to have a clear picture of the options. Later in the morning, the oncology social worker stopped by to visit. She’s presenting at a conference next month so we talked about the practice that goes in to good public speaking and then she shared some suggestions for enduring Ken’s chemo treatment marathon. She wants me to find someone to talk to. Apparently, it’s common for caregivers to start crumbling around the 8-9 month mark and she knows we have “… miles to go before [we] sleep” (with many apologies to Robert Frost for the presumption).

Instead of dwelling on our journey, let’s end today with a smile. I had a birthday recently and got a great book of poems, Doggerel, from my eldest. Before bed every night since, my youngest son and I have read a poem — in order of course because the book ends with poems about pet loss and I’m SO not ready for that right now!  This little snippet, “An Introduction to Dog,” by Ogden Nash, is the first poem:

The dog is man’s best friend.
He has a tail on one end.
Up in front he has teeth.
And four legs underneath.

There’s more and I highly recommend it!

Signing off now, “with hope….” (Another movie quote. Do you recognize it?)

I wanted to talk about this last night but I had a raging headache, maybe a little bug? Anyway, the topic was important so I waited to try to do it justice…

The topic is bravery.

A very kind male nurse — an orthodox Jew with a thick, heavy, black beard — came to the house yesterday to remove Ken’s chemo pump. We were talking, as strangers do, about nothing in particular, when Ken interrupted to say that the cancer makes it impossible to be brave.

I had to disagree.

Bravery is putting one foot in front of the other, even when you are so sad and tired and sick that you just want to crumble. Bravery is going to your chemo appointments to be injected with substances so dangerous your care team has to suit up to handle the infusion bags. It’s being irradiated every day for weeks. It’s talking to your doctors about your “options” and looking at your test results. It’s asking for the facts, even the truths you don’t want to hear. It’s accepting your diagnosis but refusing to let it define you.

My eldest is so good at talking to his dad when Ken’s stressed. My youngest joins enthusiastically whatever activities appeal to his dad — flying foam airplanes, throwing parachutes out the window, launching little rockets. My daughter teases and jokes with her dad, sometimes actually making him laugh.

These are examples of bravery too.

The nurse agreed with me and as he left yesterday, he wished us “hope.”  He said that was the strongest prayer he could offer us.

Hope is brave too ….

Monday was the start of a new round of chemo. Last Friday, the oncology nurse called to move Ken’s chemo to this Thursday. When I asked whether our oncology appointment would also move to Thursday, the oncology nurse checked with the doctor and called me back. “Never mind,” she said. “Doctor says Ken has to start chemo immediately.” And so we arrived at the cancer center at 8 Monday morning.

As usual, bloodwork is first because it takes about an hour to process and chemo can’t start until they confirm that it looks okay. The radiation has taken its toll on his WBC, lymphocytes, etc. Everything is very low but doctor wants to see if the numbers start to rebound now that radiation is over.

The chemo cocktail is partly new and partly familiar. Over the course of the day, he received:  FOLFOX, which is a combination of 5FU, Oxaliplatin, and Leucovorin (2 hours); Vectibix, some sort of cousin to Erbitux (1 hour); and benadryl, to ensure that he doesn’t have an allergic reaction to the Vectibix (1 hour). And finally, he received a push of 5FU and then went home attached to a pump infusing more 5FU for the next 48 hours.

Tuesday was another “big day.” We met with the surgeon to discuss Ken’s current health status and surgical options (timing too).  The appointment did not go as expected, at all (talk about understatements!).

From the beginning, we’ve been expecting that chemo and radiation would be followed by surgery. Since he hasn’t had a PET, we don’t know whether there’s still cancer present but we’re smart enough to know there’s a reason that Ken’s leg is so swollen and that he’s back on chemo. With that in mind, we went to the appointment thinking that surgery is probably sometime next year (12 weeks of chemo, 4 weeks of recovery, then surgery).

Turns out that the surgery might be never. Since Ken’s been dreading the colostomy bag, that’s good right?! The doctor explained the surgery that Ken would require; it’s extensive and will also require plastic surgery for reconstruction.  The twist in the story is a little harder, believe it or not.  “Wait and see” might be a better approach for Ken because .. well, because Ken’s illness is not curable — treat to extend life: you’d think they’d come up with a better label.

So, now we have some thinking to do and maybe some planning.

Another quick update — I called Tuesday morning and, after giving me the expected scolding for not taking Ken to the ER on Monday, the oncology nurse asked Ken to come in for a Doppler at 1PM to ensure that he didn’t have a clot. He did not (Yay!) and back home we came.

On Wednesday evening, Ken’s leg was so swollen that I contacted the on-call doctor (who coincidentally was our oncologist!). He sent us to the emergency department and after the usual interminable ER wait, Ken was taken back to a room. He was exhausted and being able to lie down was a huge relief.

First challenge:  It’s after midnight and the doctor orders a CT to check for a clot. Unfortunately, it was done incorrectly, meaning that the doctor wasn’t able to use it to evaluate whether Ken had a clot in his pelvis. Ken was given a blood thinner (injected into his belly!) “just in case” and admitted.

Second challenge:  This morning, two vascular surgeons walked in and scared us half to death by telling Ken that he had a suspected aortic dissection in his abdomen (discovered by the incorrectly done CT!). Then, no exaggeration, 15 minutes later, they came back with another surgeon and told us that it was just a thrombosis and he should take baby aspirin to help it dissipate. (Can you tell that I’m cranky from lack of sleep?!)

The vascular surgeon ordered another Doppler — both legs this time! — and confirmed that Ken had no clot. Time to go home.

Third challenge:  While this was going on, I called the oncologist’s office to check on next week’s PET scan. The scheduler said that our insurance company pended the PET scan authorization for additional review. Our insurance challenged the “urgent” request and the medical necessity. Seriously. So, now we’re waiting for the insurer’s medical director to review the request.

And final challenge for the day:  late this afternoon, the oncologist called to let us know that Ken needs to start chemo on Monday. He’s sure that the swelling is due to lymph engagement. Ken will be on a different set of chemo drugs.

All in all, it’s not been the easiest 24 hours. Perhaps the best choice for now is rest and then starting anew tomorrow.

We’re two and a half weeks into Ken’s break. The oncologist took him off the xeloda after all. He said Ken needed some time to heal after more than 28 weeks of chemo.

The radiation damage is healing slowly. His back and abdomen continue to ache and he still has a lot of swelling. The good news is that he has a little more energy.

This weekend was the 170th Canfield county fair, a good way to celebrate. It was hotter than we expected (and crazy crowded) but we all had fun. The kids especially liked holding the baby ducks and chicks. Haley really didn’t want to give her ducky back!

We tried some fair food (kettle corn, a caramel apple, funnel cake, a steak sandwich, ice cream cones, corn dogs, and lemonade). And of course, Ken would find a nice fresh salad at a county fair!

By the time we got to the giant pumpkins (the winner was more than 1,200 pounds!), Ken was exhausted. He and I sat for about an hour while the kids went through the fun houses and played some games. Then we walked slowly to the *free* tractor ride back to our car.

Unfortunately, Ken’s leg is really swollen today. It was such a nice day that we’d originally planned a trip to the renaissance festival.  We’re not sure if it’s just that he walked a lot yesterday, if there’s more lymph activity, or something else going on. He kept his leg elevated all day and we’ll call the oncologist tomorrow morning.