People often talk about how difficult Christmas can be and this year, for the first time, I fully understand what they mean. We are not “in the spirit” even though we’ve shopped and baked cookies and watched some Christmas movies (if you’ve never watched a little gem called “Arthur Christmas” I highly recommend that you give it a go).

With a little over two weeks left in the year, I’ve been thinking about the themes of redemption, forgiveness, hope, charity, and joy, among others and how I have seen them throughout this year of cancer treatment.

There’s a very religious lady who will talk with anyone and everyone about her relationship with Jesus but not in a proselytizing sort of way. She’s just talking about something that’s super important to her and maybe, a little bit, the conversation helps her deal with her treatment.

There’s a tiny, older lady who hugs the caregivers and thanks them for being there (she makes me cry).

There’s a grumpy daughter who comes in with her mom and complains about how long everything takes and how inconvenient it all is (she is the only caregiver who actually upsets me but I remind myself that her mama is ill and her resilience is low).

There’s a woman whose sister sits with her every treatment. They are elderly and the cancer patient sister curls up under a beautiful patchwork quilt. The healthy sister does crossword puzzles and chats in a desultory way with her patient-sister during treatment. They sit close together, mirroring each other, offering hints of the childhood friends they used to be.

There’s a small Asian man who sits next to his wife or girlfriend, holding her hand and occasionally kissing it. She has lost all her hair and wears a rakish little hat low on her forehead. Her father often comes with them and stands throughout her treatment, leaning against the opposite wall and silently watching over her. We’re a little bit alike, problem-solving to avoid grieving.

There’s a daughter, a college student, who pushes her dad’s wheelchair through the chemo room, settles him into his chemo chair and then sits by him. He’s had several (scary) medical incidents — a fall in the patient bathroom, a sudden drop in blood pressure, a seizure — during  treatment. She attends the college by our house; we’ve talked to her a few times but I haven’t seen them recently.

Sometimes I feel anxious if I don’t see a face I expect to see. I wonder if that person is okay or too sick for chemo. Usually, when they finish treatment, everyone knows so I generally think bad-news thoughts when someone is “missing.”

Occasionally, I will see a patient who is NED (no evidence of disease), getting a port flush and talking about when it will be okay to get their port removed.

It’s been a rough few days.  On Friday evening, our dachshund, Shadow, lay his head down—in the traditional long, narrow dachshund resting pose—for the last time. He was 17 years old and he was family. My eldest and I didn’t sleep that night, what with watching over Shadow and with grieving his loss.

Very early the next morning, Ken had a CT scan because he’s been having chronic back pain and a scan was deemed necessary to rule out any metastatic activity. We returned home from the scan at maybe 9:30AM and we weren’t even back in the house 10 minutes before we had to head back to the emergency room urgently. They had found a massive embolism running the length of Ken’s leg and possibly another one at the top of his intestines. The oncologist said that it is very likely he also has blood clots in his lungs (was that supposed to be reassuring?!).

Thankfully, Ken was allowed to go home on Sunday, with his blood thinner strategy in place. For those of you who are curious, his blood thinner costs $100/shot, roughly $73,000/year. I am completely exhausted by the ongoing and ridiculous conversations I am forced to have with our insurance company about whether or not treatment is needed. The current issue is that the insurance company doesn’t consider his blood thinner dose necessary–they think he’s taking twice the amount he needs.  I literally have 10 days to resolve the latest conflict before he’ll be out of blood thinner and we’ll be back at the hospital. Patient advocacy is the most effective approach — phone calls to the cancer center, phone calls to the insurance company, phone calls to the pharmacy. Repeat as needed until you results.

In case there is any question, I am firmly of the opinion that payment for health care in the US is entirely a matter of patient advocacy and chance; in other words, the system is biased, unfair, and a HOT mess.  Politics aside (!), I am having a margin of success because I am well-educated, speak English fluently, and am familiar with the industry.  Ultimately, all I care about is ensuring that we can continue to cover the cost of the insurance, deductibles, and copayments for Ken’s care and that all the health-challenged patients I have come to know can also continue to get treatment without having to consider whether medications or food should be in the budget this month.

Anyway, stepping down off the soap box, let’s get back to Ken’s journey. (Ken says I shouldn’t call it that because journeys are supposed to be fun but I think he’s mistaken. Vacations are fun; journeys are just the paths we travel through life.)  We went to the cancer center on Monday, reminded by the specialists from the hospital that he should NOT have chemo … period. His oncologist kind of chuckled about that and said, basically, if Ken felt up to it, he really needed to have chemo and so, he had chemo.

And that brings me to today’s topic, the 12 gifts of Christmas. These are a little different than the familiar “12 days of Christmas” but particularly relevant to us this year. This Christmas, I am grateful for:

1. The CT scan scheduler, so determined to help us find an appointment and so very kind.
2. The emergency room and 8^th floor nurses who helped Ken with his treatment and supported him through a stressful night in the hospital.
3. The nurse practitioner and her (annoying) insistence on a CT scan that may have saved Ken’s life
4. The oncology social worker who stops to visit Ken at every chemo appointment and who somehow knew that I was crumbling and asked me to visit her in her office, just to make sure I am okay
5. Friends and family who check in, give advice and encouraging words, offer to run errands, and send notes (and treats (“Gromit, that’s it! Cheese!”)) Let me call your attention to this item’s placement in the traditional “five golden rings” slot.
6. The technician who, last spring, found Ken’s prior colonoscopy results
7. Customer service representatives who have helped me at least 30 times to get claims reprocessed and treatments approved. Yes, they can be a barrier but they are also human beings who understand and can help.
8. The super moon that brought my moon-loving mom close to me again, even if only for a little while at a time when I was feeling particularly lost
9. The stranger at the grocery store who asked if she could return my cart for me
10. The stranger at Costco who asked if Ken was okay (after seeing me helping Ken to the car) and offered to put the 40 lbs of cat litter and 50 lbs of dog food in the car for me
11. Hospital residents who think Ken’s case is interesting but also want to provide care in their eager, new-doctor, conquer-the-world  kind of way
12. The oncologist, the radiation oncologist, the surgeon, the urologist who have patiently answered our questions, while guiding, encouraging, and cheering Ken throughout this year’s horrors

It’s easy to talk about what a terrible year it has been – and it really has been a doozy! – but every day something amazing has happened; for that I am very grateful.

May 2017 bring you joy, hope, and peace.