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.

“Don’t you dare let our best memories bring you sorrow.”

It’s a line in the song Lost Stars by Maroon 5 (from the movie Begin Again).

Music has such remarkable power to sooth. Ian was listening recently to the Guardians of the Galaxy soundtrack and he said that the songs on the playlist were much better than what’s on the radio, that these “old” songs tell stories. He asked for more and now, as he’s doing his chores, he’ll come over and share an earbud so I can hear the song that’s playing:  Barry White, BTO, Abba, Diana Ross, Jackson 5, Rupert Holmes, Carol Burnett, the Commodores, Julie Andrews, Player, Barbra Streisand, Peter Paul & Mary, and our wedding song, When I’m Sixty-four.

My “just for walking” playlist is essential to my nearly daily walks with our sweet pitbull, Poppy. (They would be daily if she didn’t object strenuously to walks in the rain!) We go all around the nearby neighborhoods and occasionally into Panther Hollow, a lovely wooded trail (though that’s a 5-miler, so we have to save it for the weekends).

After our recent rough day, she and I walked briskly through Squirrel Hill in the early morning light and, as the music played, I cried and cried and cried. It was oddly private, on those very public streets.

We learned yesterday that Ken will be done with those radiation boosts this week. That’s good, as the pain has been difficult. The nurse asked, “scale of 1 to 10” what his pain level was. I said, “11;” Ken said, “9.” We only have two days until his chemo break. In three weeks, all the damaged cells will be replaced and the radiation pain will be mostly gone. Three weeks after that, Ken will have his third PET scan.

So we thought. Unfortunately, though, The Plan has changed again. The doctor said he’s concerned about Ken’s abdominal lymph nodes, above the treatment area. He thinks they are “engaged.” Ken will still be done with radiation this week but his chemo break has been canceled. He’ll be staying on Xeloda until his next oncology appointment, September 1st.

Rough day, today.

Have you ever read a news articles about those teams that start celebrating before the final whistle?  Yep; that would be us.  Ken’s radiation treatment is being extended and the dosage increased. You don’t need me to tell you why.

A friend I haven’t talked to in years texted me unexpectedly recently. “How’s the family?” I honestly don’t know how to answer. Ken says that he doesn’t want to sugarcoat his responses anymore but the truth — the actual, honest-to-God, whole enchilada — is not for the unprepared. This is the stuff of Google searches, the link you can’t unclick.

What more is there to say?

 

 

Ken finally got some good news today at his monthly check-in with the oncologist. Here’s how the appointment generally occurs: the nurse goes over Ken’s vitals, checks his medication list for changes, and asks about symptoms and pain level. Then, we sit side by side in the coldest exam room this side of a freezer (I swear it was like 60 degrees in there) and we await the doctor.

When he arrives, he asks a bunch of questions about Ken’s symptoms and treatment. Then, he has Ken get up on the exam table where he conducts a brief exam (listens to Ken’s lungs and heart) and looks at the visible tumors. Today, we also talked about the radiation symptoms: the skin damage, abdominal pain, shortness of breath, and exhaustion, among others.

After that, each visit, Ken gets dressed and we go over “The Plan.” Right now, The Plan is to finish radiation (and the chemo pill) in the middle of August and then put Ken on Avastin. Today, the oncologist also added a PET scan 6 weeks after the end of radiation (Apparently, having a PET scan immediately after radiation can cause false positive results.) and asked Ken to meet with the surgeon. We haven’t met his new surgeon yet but we learned today that he is ALSO on the tumor board and is very familiar with Ken’s treatment plan.

And he gave us some good news —  Ken can have a two to three week break from chemo after radiation is over!  Unfortunately, the doctor said that we can’t risk a break longer than three weeks. As it is, Ken has two (probably three) new tumors, just since the start of radiation. But a break! Two or three weeks without chemo or radiation! I am anxious and happy for Ken at the same time. He really needs some time away from doctors, hospitals, needles, and toxic medication.

We’ll have our 24th wedding anniversary during his break.  When we heard the diagnosis back on February 2nd, there was no telling where his cancer journey would take us. We didn’t know if we’d even have a 24th wedding anniversary.

So … Ken’s getting a break. Celebrate with us.

My mom has been gone for 20 years. Most people don’t realize that, before she died, she had a terrible, debilitating illness. When she was diagnosed, I no longer lived in the same city with her and struggled with how to be available to her and to my sister, who lived close and ended up responsible for her care. She was sick for maybe 7 or 8 years and after she died, I realized (slowly and with some guilt) that the person I missed, the person I called “Mom,” had been gone since shortly after the illness arrived. It was an Ivan Ilyich moment long before I read the story.

The problem is that the healthy have so little connection to illness. If you don’t wake up in pain, for example, you can’t possibly understand how completely pain can take over your whole being/your every thought. If you don’t travel to radiation every single day, is it possible to understand the debilitating sorrow and fear — not to mention humiliation and pain — that come with that trip?

So, how do the healthy in a family maintain their relationship to the ill? That’s a question that troubles me constantly. Ken falls asleep before dinner is on the table and he sleeps until long after we have all tucked ourselves in for the night. When he pulls himself — still  worn out — from the bed every morning, the kids are either sleeping or rushing to their activities. It’s not exactly bonding time. Yes, the weekends offer a tiny respite from chaos but not from cancer. While Ken gets a break from treatment over the weekend, he continues to be exhausted and emotionally bereft.

When my mom was ill so many years ago (long before we could turn to the internet for support or even information), her moods changed abruptly. She was unpredictable, often irritable and disoriented. Occasionally, my quiet, loving mom would actually shriek at her caregiver (usually my sister, sometimes me). She would always be apologetic later but that never made it easier in the moment. Of course, Mom had an irrefutable excuse for all of her moods but when I think about her now, I focus more on the person I knew before the illness — always depressed and anxious, but creative, smart, so encouraging, and supportive of the two daughters she loved without measure.

Ken’s different too and so are we. A little story:  I met one of Ian’s camp counselors last week — he goes to a music and art day camp at a local college — and she laughingly said that she hugs Ian every day to try to make him smile. It’s a frequent refrain — people commenting on Ian’s moroseness. We don’t share our private sorrow with most people and I’m not sure it would make Ian’s life any easier. Kids, especially, seem to enjoy teasing him about his “lack of emotion.”

Are the kids even aware of how much they lean on each other now? They hang out on the patio and play a board game or build a fire in our little fire pit. Sometimes, they sit together and play silly computer games like “slither” or “octodad.” It’s shockingly normal in our very abnormal lives.

The thing about cancer is that it will steal everything from you, if it can:  your confidence, your privacy, your energy, your appetite, your short term memory!, even your relationships. And I’m not just talking about the patient. Cancer steals from the whole family. Low resilience today? Don’t worry; there are new challenges coming your way. Perhaps new tumors, ugly side effects or maybe something prosaic like a flat tire.

I haven’t changed a tire in more than twenty years but this week, the Mini got a flat. AAA sent Haley, me and the car home in (and on!) a flatbed truck. (Thank you, Rich, for arriving in 20 minutes — instead of the two hours we were told — when you heard we were stranded roadside.)

Haley and I tried to take the tire off by ourselves; we were, unfortunately, foiled by machine-tightened lug nuts. We had to call on Tristan’s strength, a harsh blow to “girl power” but one does what one must.  Ken even came out for a couple minutes to help Tristan work a particularly tight lug nut loose, though he went back into the cool quickly. At 90F, the day was far too hot for him.

I had a secondary adventure since the replacement tire was not on a wheel. The mechanic at Costco said, “Did you buy this tire here?” Well, of course not. “Does that matter?” I asked. Sigh. “I’ll put the good tire on the wheel and dispose of the flat for $20,” he said.  “Sold.”  While I was putting the new tire on the car, two women stopped to ask if everything was okay. Isn’t that lovely?!

Our new refrigerator was also delivered today. The delivery men had to take the old frig apart to get it out of the house. Luckily, the new one was in pieces (the doorways in our 120 year old house are only 29 inches wide). The swinging door between the kitchen and hallway was, however, a big problem and the delivery men wouldn’t touch it.

Fortunately, Tristan and Ian were able to help, taking the swinging door off its hinge (during which the spring mechanism exploded across the room). Thank goodness there were no important body parts in the way, because the spring is at least 5 inches long, highly compressed, and very heavy.

Replacing the spring was much harder than shooting it across the room. Tristan figured out that we could compress the coils with zip ties but it took hours to get it small enough to fit in the hinge. At one point, after multiple attempts, I experienced DOUBT and went to Lowes for a replacement.

The very nice Lowes employee assured me that there wasn’t a snowball’s chance in Hell that I would find that hinge mechanism at any store (except maybe Pittsburgh’s hidden treasure, Construction Junction, which specializes in reclaiming antique and historically relevant hardware, furnishings, etc).  So, I returned home and reapplied myself to the task.

About the time I was ready to throw it through a window (also original to the house so I could NEVER actually throw anything at the windows!), Haley sat down with me and gently slipped the spring right into the hinge mechanism. She held it up, I looked at it, put my head on the table, and burst into tears. “Mom, mom. I’m sorry. Do you want me to take it out?” “No. No, I really don’t want you to take it back out.” “Then why are you crying?” “I have no idea.”