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.

We didn’t get that promised call from the colorectal surgeon last week. Oddly enough, however, Ken was contacted directly by the oncologist last Thursday morning to come into the office immediately. When an oncologist you’ve never even met calls personally and asks to see you now … well, let’s just say, we dropped everything and hurried there.

The doctor jumped right into the treatment plan. We had to interrupt him and ask for the biopsy results. Not his fault; he thought we knew. So, he slowed down and drew us a picture, literally, using the paper on the exam table. (Yep, the drawing is in the folder with all of our medical notes).  The cancer is rectal. The proposed treatment plan is chemo, radiation, surgery and then more chemo. Ken’s cancer is in the “treat to cure” category.

He examined Ken’s tumors. The cancer has spread into the groin since Ken’s surgery. The oncologist said we need to start treatment immediately. First, however, he asked me to text him the pictures Ken has been taking to document his illness. Because Ken’s cancer is so rare, the oncologist was planning to present the diagnosis and treatment plan to the tumor board. (Who even knew there was a tumor board?!)

After meeting with the oncologist, we had a marathon drug review with one of the oncology nurses. The drug regime includes Avastin, irinotecan, leucovorin, and 5-FU. The side effects include all that you would expect: hair loss, nausea, fatigue, and more. Then, we met the oncology nurses (hugs were given) and promised to “see you next Thursday!”

I spent the majority of Friday on the phone, scheduling various doctor appointments and tests in preparation for the start of chemo. Mostly, each doctor office seemed to expect us to adhere to their preferences. (Office: “your appointment is Thursday.” Me: “uh, chemo starts Thursday morning” Office: “you have to come in on Thursday” Me: “but we can’t come in on Thursday” ….) Because Ken’s condition is so rare, he is something like a juicy bone. Here’s the appointment list thus far:

• 1/4 Initial primary doctor appointment
• 1/19 Initial urologist appointment
• 1/25 “Cyst” surgery
• 2/2 Surgery follow up/biopsy results
• 2/2 CT scan
• 2/4 CT results
• 2/9 Colonoscopy
• 2/11 Oncology appointment/biopsy results
• (2/12 doctor presented to the tumor board)
• 2/17 Port surgery
• 2/18 Oncology follow up, chemo, pump provided
• 2/19 PET/CT scan
• 2/20 Chemo pump removed
• 3/3 Chemo
• 3/5 Chemo pump removed
• 3/7 Ultrasound
• 3/17 Chemo
• 3/19 Chemo pump removed

Today, we met with the oncologist again, prior to starting chemo. The treatment plan is slightly changed; the tumor area is too large for radiation.

My eldest son said that every conversation now is like talking about the weather. We try to be “normal,” using our old definition of normal, of course. “How was work at the restaurant?” “Did you get any tips today?” “Were you on register or bar?” The whole family is anxious. We have these ridiculous stress dreams: the kind you have after college where you can’t find the classroom, it’s finals day and you realize you didn’t attend the class for the entire semester.

It was time for the biopsy results. Ken and I rehashed the cancer odds all weekend but mostly convinced ourselves that the results would be negative. We decided that if the doctor told me to come back with Ken, then the cysts were cancerous. We waited in the outer room of the doctor’s office, our shoulders pressed into each other.

Finally, after hours that were actually minutes, it was our turn. The doctor came into the waiting room and asked for Ken. Then he looked at me and motioned me to come too … and we knew we had our answer.

The doctor had to say it twice; I’ve never heard of it before:  metatastic adenocarcinoma – intestinal cancer that has spread from its place of origin. I asked the obvious question: “what’s the origin?” He didn’t know. Ken’s cancer shouldn’t have spread to his scrotum. Adeno cancers generally spread to the lymph nodes, liver, lungs or bone, NOT the scrotum. I looked it up later: “only a few cases” like Ken’s have been identified, according to a study for the National Institutes of Health.  Being in the minority is great when it’s lottery winnings, maybe, but not when it’s cancer.

The doctor sent us for a CT Scan with contrast that day; our case is interesting, he said, sincerely. We drove pell-mell to St Clair Outpatient Diagnostic Center in McMurray for a 2PM appointment. The scan results were back on Thursday and we met again with the doctor. Good news:  only the scrotum and lymph nodes were involved. Bad news:  we still had no origin. The urologist had already called in a colorectal surgeon; Ken’s colonoscopy was scheduled for the following Tuesday. More bad news: we had to wait through another weekend with no answers and no action.

Ken endured the colonoscopy prep as well as he could. We didn’t talk about it much but he was bleeding, pretty much always a bad sign. We had to leave the house at 6AM for the colonoscopy. The kids — amazing as always — got themselves up for school while I waited 40 minutes for Ken’s procedure to be finished.

The colorectal surgeon said there was a mass in Ken’s anal canal and some “polyp-y” tissue but nothing in the rest of the colon. He biopsied the two spots and told me we’d talk when the results came back. I pushed for WHEN and he promised, “Thursday, no later than Thursday.” I haven’t cried in front of Ken yet but I almost did when the nurse looked at me and whispered “I’m sorry.”  Seriously, I pinched my wrist and bit my cheek to pull myself back together. Nothing had changed: we already knew it was cancer!

It’s Friday morning and I’m on hold with our insurer, trying to get them to move quickly to approve a test for Ken. There have been so many wonderful people involved in our physical and emotional care; I’m not naming them out of respect for their privacy but I think my second lesson in our progress toward “new normal” is something one of those wonderful people told me:  “Cancer isn’t a ME thing; it’s a WE thing.” 

We were still in our prior normal on January 18th, when we met with the urologist and on the morning of January 25th, when we went to St Clair Hospital for Ken’s surgery. I hadn’t met the doctor yet; Ken said that being naked with his doctor and his wife in the room was weird and he wouldn’t let me go into the patient room with him.

During the whole process of getting to surgery (doctor appointments, medications, pre-op tests, and bloodwork), there was nothing unexpected:  no lightning-strike, lightbulb-illuminated flashes of insight regarding what was to come.

The surgery was an easy-peasy two-hour outpatient procedure. After the St Clair status board changed Ken from “procedure” to “recovery,” the doctor introduced himself to me and gave me the usual “went as expected” speech, ending with the clincher:  “after the results come back, we’ll know what we’re dealing with.”

Nineteen years ago, my dear, courageous sister called me at 3PM on a Thursday to tell me that we’d lost our mom.  Eleven years later, at 8:30AM on a Wednesday, she had that same call with me about our dad.  In a single moment, the earth shifts on its axis; tectonic plates knock together. WHAT?! “We’ll know what we’re dealing with?!” We’re dealing with a couple cysts. They are just cysts, right? But I could tell he didn’t think so.   

Here we are, on Tuesday, February 9th, 2016, preparing to leave for Ken’s colonoscopy. It’s 5:50AM; we need to be at St Clair Hospital by 7AM. It’s only a month since the first doctor appointment and the flurry — can I call it a cocktail? — of anxiety, confusion, and uncertainty.

It all started back in November, when he found a cyst. We did all the things you do when you find something unusual on your body (“google it!”).  He monitored it carefully. The cyst was growing, which we knew would happen. That’s what sebaceous cysts do, after all. After a little while, there were two quite large cysts and a few small ones. We discussed in December whether a doctor appointment was warranted. Ultimately, because of where they were located (on his scrotum), they became uncomfortable, getting irritated when he walked or exercised. He started wearing larger adhesive bandages and scheduled a doctor appointment for early January.

Then, the infection started. Ken had planned to have his primary doctor look at his cysts and some hemorrhoids that had appeared in late December (we laughed about how he was nearing 55 and starting to “fall apart”).  On the Monday before his appointment, he said something like “do you think this redness is a problem?” as he showed me a heavily inflamed torso. Tough-it-out though he tends to be, he agreed that a more urgent doctor visit was warranted and I placed the call to his primary physician. The office staff was reluctant (“he has an appointment at the end of the week; can’t this wait?”) and we arrived at our first lesson:  if you think it can’t wait, follow your instincts and assert yourself. She reluctantly gave me their last appointment for the day (they close at 1PM on Mondays.)

Yes, infection, the doctor agreed. He gave Ken antibiotics, told him to see a urologist in 10 days to have the cysts removed and hustled us out the door. (The furnace was broken in the office that day and they were wearing winter gear to see their patients. It was bitter cold in the waiting room and the exam rooms. The whole fully clothed visit lasted minutes.) We were relieved to have an answer and medication. It made his stomach upset but we learned how to combat that (yay, google!) and waited for the infection to go away. Except, it didn’t.