After the diagnosis, we started talking about finding our “new normal” and redefining ourselves but that’s a complex, obviously. Ken started saying that he was working on “Ken 2.0,” like this whole thing is a new software release. After a while, though, we decided that it’s more like he’s a refurbished model, a few nicks and scratches but the damaged parts were replaced and he works just fine.

For Ken, the scars are from life’s battles, the norm as we all fight through life.  I like to imagine that our scars are visual memory cues. The scar on my right hand reminds me that my sister and I played girl detective games (a la Nancy Drew) with the neighborhood kids when we were little (while running from (or after?) the bad guy, I fell over a case of beer in our garage and cut my hand open). The scar on my eyelid reminds me of how sick I was with the chickenpox I caught (from my sister) in college. The big one on my left knee takes me back 11 years to a soccer field near Monroeville, when I tore my ACL helping Tristan’s team warm up before the soccer game.

These days, scars remind Ken of cancer and colostomy bags (which sounds like bad poetry or maybe the title of a punk band).  I’ll confess that I’ve been struggling, really struggling, to understand his abhorrence for the colostomy bag. Obviously it’s not desirable but in my narrow focus, it’s way better than death. For him, it’s part of the conversation every cancer patient has:  if, to win the cancer battle, we have to metaphorically burn down the city, what have we won?  The quality of life conversation is a critical part of cancer treatment and we talk frankly about the many scenarios. For now, I will say — loud and proud — that I am emphatically still of the opinion that a colostomy bag can be part of a great LIFE and I’ll bet that most of the half a million people in the US who have a colostomy bag would agree. Nonetheless, I won’t shut down the conversations that he needs to have about death and dying.

There’s a Yevgeny Yevtushenko poem called Colours that I came across in my impressionable youth (oh, yes, I memorized it, as obsessed teens do). Phrases from it keep popping into my mind:

Fear hems me in. I am conscious that these minutes are short and that the colours in my eyes will vanish when your face sets.

Uplifting, right?!  Another poem that won’t leave my head is Separation by WS Merwin. If you are interested, both are easily available on the magical internet (again, yay, google!).

There are many silver linings in this otherwise dark cloud.

One of those silver linings, for me, was discovering just how rich I am in friends and relations.

From the moment of my diagnosis, Deb and I have received a great outpouring of support, sympathy, and offers to help. I am very humbled. I found out that I was rich in relationships I didn’t know I had, or still had.

People I haven’t seen or heard from in decades have reached out to give us comfort. Cousins and other relations whose relationships I’ve sadly neglected have sent us touching electronic missives. My work friends spent time and money to put together a chemo survival basket and have aided in so many other ways. Emails and texts have come from all over the country.

You know I am by nature something of a recluse, not someone who goes out his way to surround himself with people. That’s why it’s simply amazing to me, the number of people who have reached out to us. I had no idea there were that many people out there who even remembered me, to be honest. Again, I am very humbled–and grateful.

There is nothing like a serious illness to remind you what is most important in life–and, turns out, it’s not money, status, fame, or things like that. For me, turns out, the most important thing in life is/are the relationships that you make and keep with family, relatives, and friends.

I have not always been good about maintaining these relationships, so it is with hat in hand that I reach out now to thank you for your very kind, very gracious, messages of comfort and empathy.

For most of you who are reading this, we knew each other some time in our past. For some of us, it is many decades since and we are no doubt very different people now than that which our memories paint. But I have been remembering a lot in recent days, and your messages have made those memories vibrant, so much so that the time between then and now seems to disappear. Photos like these help me remember.

I hope that this note finds you and yours in good health and spirits–or, in the very least, I pray that the burdens placed on your shoulders are light. Take care of yourself and please remember that I hold your memory, and our relationship, precious.

Turtles adapt, too! When I started to tip him back into his clean aquarium today, instead of scrambling to stay at the bottom of the bucket like he’s done in the past, Survive-E walked to the bucket opening and slid into the water. He knows the new routine.

It’s a good thing Ken called about his rash because it’s a fungal infection at one of the tumor sites. According to the doctor, since Ken’s immune system is compromised, these kinds of things will pop up.

Thursday was our “short” treatment at the cancer center. Ken received an infusion of Erbitux (which is a monoclonal antibody, not chemo). Unfortunately, the nurse couldn’t draw blood from his port and had to give him a clot-buster (the nurse called it “Drano for your bloodstream”), which takes about 30 minutes to loosen things up. Once she drew the blood, we had about an hour wait for the lab results. After that, of course, the pre-meds were started; and finally, the actual treatment began. Overall, life being what it is, our short day was a mere hour shorter than our long day.

We learned on Wednesday that Ken has 4 more chemo treatments before the next PET scan. If you’re looking at a calendar, that means it will be May before we know how much more chemo he’ll get before the surgery.

Ken says that life is a series of learning experiences and in this case, his diploma is a colostomy bag.  At some point, we might even find that funny. Right now, however, colostomy bags are not very humorous, though we’re occasionally able to laugh about cancer and chemo. Most of the cancer “humor” that I’ve read is just terrible. However, Ken did discover a great website, cancerowl.com. It’s a funny, honest portrayal of life after a cancer diagnosis.

We cut Ken’s hair — though not his beard yet — this afternoon since it’s starting to fall out in patches. I had been planning to shave my head too but Haley and Ken both said it would be too sad, a constant reminder of Ken’s cancer. Not that we ever forget.

Ken is deeply concerned about the impact of his illness on his family. He asks me sometimes to reassure him that the battle is worth fighting, not because he’s depressed (we are all grieving) but because the battle itself takes an enormous toll physically and emotionally on everyone. Being Ken, he feels responsible for the well-being of all his friends and family. And so I remind him that it would be much, much more painful — physically and emotionally devastating — if we lost him.

I know the statistics and prognosis for people with stage 4 colon cancer, having done way more research than anyone should without knowing specific details about condition and treatment (in all seriousness, although I’m a passionate advocate for being an educated patient, if you have ever been tempted to look into the treatments, side effects, blogs, support groups, etc, be wary. You will find things you won’t ever be able to forget.) Medical research without context is not useful, unless you are TRYING to scare the bejesus out of yourself.

Statistics are just data points. We focus, instead, on each day’s battle; admittedly, some days are less an organized battle and much more a series of skirmishes, as untidy and chaotic as they could be.

Tomorrow, we have an unexpected check-in with the doctor because Ken is sporting a rash on the skin around one of the tumor sites. The oncology nurse assures Ken that rashes are good news because they are generally a sign that the chemo is working. I love that we can actually laugh when the cancer team tells us stuff like that. “Ken, you may get acne on your cheeks like a teenager; we hope you do because, statistically, people who get acne after chemo have a higher rate of success with this medication.”

Today was better than many recently. Although Ken was exhausted as he is every day, we were able to have a quick family dinner (pork burgers and veggies) before he fell asleep. We even got a little library time with Ian and Haley. That might sound odd as a treat but we all find the library very peaceful, almost a sanctuary. Ian picked out a handful of comics to read before bed. (I’m trying to encourage Calvin and Hobbes but he’s currently more a fan of FoxTrot.)

I could wish for peaceful sleeping but the zombie apocalypse dreams continue. Zombie movies are the worst (except those fantastic Jiangshi movies … and maybe Sean of the Dead … and Warm Bodies … but NOT I Am Legend).  And suddenly I see why I’m dreaming of zombies instead of failed college courses. No more zombie movies.

I’ve had probably close to a dozen ultrasounds over the years (one a really miserable internal and that’s as detailed as I’ll ever get about it!). Ken had his very first ultrasound Monday. We debated over the weekend whether it would be internal; it was. The doctor described the procedure in advance — there’s a balloon inserted and a little camera.

It seems likely that most people would NOT consider a rectal ultrasound a repeatable experience; but congratulations to Ken, his next one will occur in May to allow the doctor to monitor progression of the tumor.  I’ll leave the details about the ultrasound to the imagination; suffice to say they had to apply a topical anesthesia for the procedure to continue past the initial stage.

The whole process took no more than 10 minutes. We all met up again in the doctor’s office to review the pictures (sadly no DVD to share!). The colorectal doctor was very congenial (his office staff is not). He spent more time talking with us than actually doing the procedure. It’s likely that the original surgical plan will remain; basically, the surgeon will remove the entire rectum/ sphincter and create a stoma for Ken’s permanent colostomy bag.

Ian and I have established a turtle-cleaning rhythm. Yep, we’re adapting. He takes the turtle out of the aquarium and puts him into a bucket. I wash out the aquarium and refill it. Since the turtle is aggressive after he’s first moved, instead of picking him up, we gently tip the bucket and slide Survive-E back into his aquarium:  one turtle touch per cleaning!

We’re even entering a bit of a routine regarding chemo. On the long day, we’re at the treatment center for 7-8 hours. The day starts with a blood draw from his port. (In case you haven’t googled images of it, the port looks a bit like a stack of quarters under his skin.) Once the blood work comes back okay, his oncology nurse starts his pre-chemo meds (steroids, fluids, etc), also through his port. Those drugs run for about an hour (if you are doing the clock math, they are done around 10-10:30AM). As each medication bag empties, the machine beeps.

We know when it’s time to start the chemo drugs because the nurse is specially gowned to protect herself from the drugs that are going into Ken’s body. The Erbitux takes about 2 hours, which means that it’s done around 12:30-1:00.

Sometime in the noon hour, a lady walks around with sandwiches for the patients. Although they occasionally have extras for family, I bring my own food, as well as snacks that Ken likes. Throughout the day, Ken can have water, juice and soda (no caffeine) from the patient refrigerator. It’s really important that he stay hydrated, as we learned after the first chemo session!

The Irinotecan and Leucovorin take 1-1.5 hours. After that, Ken gets a “push” of 5-FU and then the nurse loads up his pump with enough 5-FU to last an additional 48 hours. We’re almost done! Throughout this process, the nurse flushes his port multiple times to clean it. A second nurse checks the pump to make sure it’s been set up properly (they worry about chemical leaks and showed us how to handle any issues).

The pump  is small, about the size of a digital camera, but so intrusive. It makes a sound like a camera shutter about once a minute, as it releases 5-FU into the port. (Ken timed it.) After it’s connected, the oncology nurse gives us a large ziplock bag for the visiting nurse who comes to the house on Saturday afternoon. The bag has flushing syringes for the port and protective gowns and gloves for removal of the pump. During the first chemo appointment, we also got a large medical waste garbage can. When that fills up, we call the home care agency and they stop by to collect it.

Time to go home! We’re worn out and for the next four days, Ken will deal with nausea, sleeplessness, chills, sweating, and anxiety. His appetite will be limited and he’ll be physically exhausted. By Monday, he’ll start to feel a little better, though almost too tired to eat anything by day’s end. Each day he’s a little better, a little less tired.

And then, before you know it, Thursday will arrive and we’ll be back at the treatment center for the “short” chemo session.

On Sunday, I burst into tears during a completely normal, albeit cancer-focused, conversation with my son. Unfortunately, we were in the middle of a restaurant at the time. I literally ran into the restroom and hid in a stall until I was calm. Then, after I splashed water on my face, I realized there were no paper towels. Yes, lady in pink who was staring at me, I WAS trying to dry my face with the hand dryer!  ¯\_(ツ)_/¯

We’ve been talking about The Death of Ivan Ilyich, an uplifting (sarcasm!) little Russian novella that tells the story of a sick man who, as his illness progresses, becomes more and more isolated from family, friends, community. It never really resonated with me but now that we are in the midst of our own health event, we are both connecting with the protagonist.  You shouldn’t be put off by my description, either. Tolstoy’s book is wonderful; it’s just that it’s also Russian literature. If you are hoping for … well, HOPE, you might want to pick a different book. Maybe, re-read A Christmas Carol.

The thing about serious illness is that it removes passion for every day life: many things become irrelevant (bickering with the neighbor who shovels snow onto our part of the sidewalk, walks with the very eager 2-year-old pitbull). Some of that is good; the neighbor is 35 years older than I am. Since I’d willingly shovel his sidewalk anyway, it really IS irrelevant if he practices poor shoveling habits. Other things are more difficult: we want Ken to spend time with the kids but he tires easily. A friend suggested video games and that’s been remarkably successful. Our youngest is also reading to Ken, which is good for both of them. It takes more concentration though and sometimes that’s in short supply (thank you, chemo brain!). Walks with the eager, though very well-behaved, pitbull take more energy than is currently available.

The most difficult is the emotional aspect. This was a “low-coping” week for both of us. My resilience bucket was mostly on empty (see the children’s book, How Full Is Your Bucket? if you aren’t familiar with the concept). We know how to be sad together (happy together is EASY) but usually, my bucket refills quickly which helps me to lift Ken’s spirits when he hits a rough patch. This week, though, my bucket has mostly been empty, which is why I found myself crying in the bathroom at Eat’n Park!

 

Cancer treatment is a waiting game. We go to chemo and then wait anxiously for the next chemo treatment. We were mentally preparing for round two all week. Ken wanted today to arrive quickly because at least on chemo days we’re actively fighting the cancer. We know the chemicals are working long after the treatment day ends, but we both feel powerless, except when he actually has chemicals dripping into his body.

This week, we were supposed to have Avastin added to his drug cocktail, but one of Ken’s tumors is still bleeding a little. Since Avastin causes bleeding, it’s out of the line up.

There’s good news, though. According to the doctor, Ken’s got “good cancer,” which made us both laugh (the medical staff didn’t really get why that’s funny). Apparently, good cancer is non-mutated and responds well to Erbitux. So, instead of Avastin, they are giving him Erbitux (weekly). Like all cancer drugs, Erbitux comes with a frightening list of possible reactions and side-effects. He received a big IV bag of Benadryl just in case he is allergic. I’m watching for hives and difficulty breathing but he’s happily snoozing right now, totally knocked out by the medication.

The Oncology Pharmacologist thinks the doctor will want Ken to be on Erbitux for 2 months before the next PET/CT to check the tumor progress. Ken has the benefit/curse of being able to see some of his tumors so we’ll be watching them as well. The largest tumor is still growing, which is stressful, but it’s early days in terms of treatment.

 

If you’ve ever seen Miss Congeniality, you may be familiar with William Shatner’s character saying, “I wake up every morning, I look in the mirror, and I say, ‘who is that old man wearing my pajamas?'” True, right?  Time passes; we hurry from activity to activity. We count down to the weekend. We talk about doing some fun thing “soon.” Yes, of course, we know life is temporary but we won’t be old for a loooong time. In fact, our definition of OLD changes as we age. In your 40s? Suddenly 50 seems like early middle age. And then, CANCER — the disease that teaches us the value of whatever time we have.

We are completely committed to curing his cancer but we know both that we may not be successful AND that everything has changed even if we are.  Ken’s been worrying about how to transfer his household tasks to me to ensure that I can manage if our journey together ends before we’re old. Does that seem fatalistic? It’s comforting for him to ensure that I know the passwords for all our financials, that I can fix our WIFI, that I know the contractors who help us maintain a 120-year-old, 3-story Victorian house, that I can pay the bills, etc.

Before he started chemo, he showed me how to clean the turtle’s aquarium. The turtle is HIS. There’s no question about that. After 4+ years together, Ken and Survive-E (I call him Turtle E. Turtle but he doesn’t answer.) have bonded, as much as a turtle can bond with a human. I am embarrassed to admit that I find Survive-E … well … wiggly. I just can’t pick him up.  Twice, I’ve cleaned the aquarium but only after one of our sons has removed the turtle for me. Seriously, I transfer spiders safely to the outdoors, clean up cat vomit, hosed down a dog and kennel after consumption of a stolen ham bone ended badly. But I cannot pick up Survive-E. If I were a superhero, I guess we know what my weakness would be.

Ken is a great teacher but we only work on transferring his household tasks for short periods. It’s overwhelming emotionally for me to think about doing all this alone. We met sometime between the age of the dinosaurs and the invention of sliced bread (technically, in 1988); literally we’ve spent more than half my life together.

Companies that sell “Organizational Change” would probably like to know what I’ve discovered:  adapting to change isn’t an organizational process. All those charts and presentations from the many change management events I have worked through in my career:  they do not reflect the reality of change.  It’s immediate; the new rhythm doesn’t establish itself right away but the change … well, it just happens without fanfare, without any formal announcement, without explanations about how important the change is and how beneficial to everyone.

We’re adapting. Our habits are changing to accommodate the new reality. Sometimes, if you were watching, you might see some of the “old” us but mostly you would see a family in transition. Ken and I talked about it today; he’s starting to feel a little post-chemo energy today and then we kind of laughed and said “for another week and then back to chemo brain.”

Ian asked me this morning to remind him to read to his dad tonight. In the before time, they had just started reading  Alvin’s Secret Code together but now Ken is so exhausted by the end of the work day that conversations, reading, playing a game are all too much.

Chemo was stressful. They couldn’t give him the Avastin because it can cause bleeding and he had a brand-new port put in his chest the day before. Since the first Avastin dosage is 90 minutes long, that means that the next chemo session will actually be even longer than chemo #1 was. Ken did great over the 6 +/- hours that we were in the treatment center. If the concept of fairness actually existed in the universality of cancer, I would be the one sitting in the chair, not him. He’s taken great care of himself over the years, while I, on the other hand, have personally — yes, all by my lonesome — improved the economic outlook for pig farmers and bacon purveyors. But there is no such thing as FAIR to cancer and, as such, Ken sits in the chair while I sit by and watch.

Part of adapting to a new reality is recognizing the new signs and symbols, which I confess I am still doing poorly. It hadn’t occurred to me that disorientation might be an issue. Early Saturday morning, Ken got up because he was feeling sick, became dizzy in the bathroom where he was getting the anti-nausea pills, passed out, and fell. He grazed his head a bit, not badly, and awoke a little later on the floor. He says he stayed there for awhile because it was nicely solid and pretty comfortable (the rugs in the bathroom are QUITE fluffy!). I was sleeping downstairs — we’ve been trying to limit my exposure to the chemicals (the nurses suit and glove up before administering the chemo and they cautioned us to be careful since he has some fluid leakage where the tumors are clustered)  — and I didn’t hear him fall.  Even if I’d been sleeping upstairs, I probably would have noticed his absence rather than heard his fall but maybe I could have helped him get back to bed sooner.

The visiting nurse was coming by to remove his pump so we told her what had happened. “Dehydration,” she said. She called me later and told me to take him to the emergency room, per doctor’s orders. Ken nearly passed out again after we got to the hospital so it was clearly the right place for him to be. The doctor ordered a CT of his head (clear), blood work (good), and fluids (needed!). We were there for maybe 5-6 hours. He felt better but still exhausted and went immediately back to bed when we got home. The kids were patiently waiting for our return and we had a delicious dinner of cereal at like 10PM. Like I said, we’re a family in transition.