2021
5 Dec 2021
Nothing new: I like the sound of that
Friday Debbie and I went to a routine checkup with her oncologist. We realized we reached a milestone: it was the first oncology appointment we could remember where Debbie was not raising a new issue. We talked about existing issues, some resolving and some just unchanged. There was nothing urgent, no new complaint. Debbie brought in a short list of questions, seeking clarifying information, which were quickly settled.
Debbie's main course of treatment ended, and her monitoring and recovery began, in April 2019. After 32 months of recovery, she finally has no new issues. One of the lessons we learned from Debbie's experience with cancer is that recovery can take a long time.
Nov 16, 2021
If he were alive today, George Carlin would observe you can say formerly forbidden words on television, offending no one, but practically anything you write on social media will offend someone.
Oct 29, 2021
I put in a few volunteer hours at a literacy program, packaging books for delivery to low-income kids of elementary school age. Some of the books featured a superhero!
Oct 18, 2021
I'm currently writing a new essay, "The Anastrozole blues," about love and intimacy when cancer treatment has suppressed her libido. Cancer treatment is nominally over but she’s in the years of monitoring. Two drugs were prescribed after treatment. One is to reduce her risk of recurrence, the other to help her manage a lingering effect. Both inhibit her libido. Anastrozole inhibits her estrogen, with physical effects as well as her libido. Let's just say $10 per time we've had sex won't pay for her Anastrozole prescription.
Sep 23, 2021
My primary writing activity is our cancer memoir. I spend must of my time writing and pitching (and pitching) essays related to the memoir. But there’s more behind my current status. I started writing for publication again a few years before the cancer diagnosis. When Debbie’s diagnosis meant I needed to give her my full attention I stopped drafting a novel at about its half-way point. It’s titled I’m Not Nice. Following four people living in a small, rural town in central Illinois, it explores whether you can judge for yourself that you’re a success or a failure in life. One day soon I hope I can return to writing fiction.
Aug 29, 2021
Jeremy surprised me
My neighbor asked the other evening if Debbie was now clear of the cancer. I told him she was clinically cancer-free, still recovering from treatment and in the middle of five years of surveillance.
“How did the treatment go?” It was the logical next question.
“It was rough for her. It was challenging enough that we're writing a memoir.”
We discussed the plan for getting published. He asked what made our book different from other cancer memoirs, a good question. I told him it spent as much time on what happens after treatment as it does on the treatment process. I added, it's told from the viewpoint of the husband who did absolutely everything his wife needed.
He stepped forward to hug me. That was a surprise.
I told him, “I think we understand each other.”
I had been assuming the target reader for our memoir was women. Perhaps there are men who will want to read it, too.
Aug 20, 2021
Zone defense for the pandemic
Basketball, hockey and football all know zone defense. We can use it during the pandemic too. Don’t rely on just one thing to protect you.
The first zone of defense is avoiding the virus. You do that by limiting the potential to exposure by avoiding crowds, especially indoors. Keeping socially distanced limits potential exposure. You can also limit exposure by being near other people less often, buying groceries as seldom as possible, staying out of restaurants and stores.
The second zone of defense is to put up barriers. When you have to be near people, you can still wear a mask. Bonus if you wear the mask properly. It is much more effective as protecting your lungs if your nose stays covered. I will admit not all of the masks you can buy cooperate with keeping your nose covered, especially if you’re talking.
The third zone of defense is to limit the impact of the virus if you get it. That’s the role of the vaccine, protecting your from getting it any worse than it has to be. The vaccine doesn’t prevent you from getting infected, that’s the role of the first two zones. The vaccine limits the consequences for you if you get infected. It may also limit how infectious you are, so you don’t spread to others.
The fourth zone doesn’t protect you, it protects those around you. If you are infected, stay away from others to avoid infecting them.
Aug 14, 2021
An unnecessary apology
When Debbie needed a lot of support during cancer treatment. She was very conscious of what I did for her. She didn't just thank me, often she also apologized for whatever made my task necessary.
What do you say to a patient who apologizes?
I told Debbie it was no big deal to help her as I was. I told her she had no reason to apologize. That cancer wasn't voluntary. Anything I did to support her was the result of what was being done to her.
Especially during recovery, she had plenty of negative comments about herself. Sometimes it was a challenge to come up with the right response, but I was vigilant about pulling her away from negative thoughts.
Aug 10, 2021
In the Desert
by Stephen Crane (yes, that Stephen Crane)
In the desert
I saw a creature, naked, bestial,
Who, squatting upon the ground,
Held his heart in his hands,
And ate of it.
I said, “Is it good, friend?”
“It is bitter—bitter,” he answered;
“But I like it
“Because it is bitter,
“And because it is my heart.”
The final 9 words of In the Desert have stayed in my mind since I was in college.
“Because it is bitter,
“And because it is my heart.”
Aug 3, 2021
I'm writing short, personal essays to build platform for my memoir. One publication's word count target is 1300-1500. First draft was 2400 words. With third revision I'm down to 1750 words. This is hard.
Jul 27, 2021
Our cancer story also highlights our privilege
While Debbie and I went through medical challenges while she was a cancer patient, we didn’t experience a prominent challenge others often face.
I'm lucky enough to have a job that provides good health insurance. Her treatment over the first 18 months was billed at $1.3 million. We paid about $12 thousand, roughly 1% of the cost.
Another big benefit of having medical insurance is often overlooked. Not only did we have an insurance company paying the bills, we had an insurance company negotiating the billed price lower as well.
We had more privileges. Debbie needed hands-on support around the clock for a while there. She needed a driver to get her to an enormous number of supplemental appointments just to keep up her hydration. I could do things for her because I am lucky enough to have a job that doesn't require me to be in a specific place to be productive. I could call in to meetings and write on my company laptop from anywhere. This was the year before the pandemic suddenly gave that flexibility to many people.
I had a company with flexible policies, and a manager willing to let me use all that flexibility and more. I could physically work from anywhere, but I also had the manager’s support to put Debbie first, sometimes not in the office for three weeks at a time.
Now consider someone working in a factory, a store or a restaurant. That person might not have such good health benefits. That person can't do their job without going to their workplace. That person is also less likely able to pay for a caregiver to spend time with the patient. That person simply can't afford to help his wife.
Cancer care is stressful. For many, paying for cancer care is stressful too. If you're thinking about a donation in support of cancer patients, consider steering your donation to a fund to help patients who need support pay for cancer care, including the treatment, transportation to the clinic, and home care.
Jul 10, 2021
One thing we didn't deal with
I've just found an astonishing statistic. 30% to 50%, some sources say even more, of partners married to a cancer patient start taking steps to end the marriage during or shortly after cancer treatment. It seems the partner reaches the point they feel overwhelmed by it all and decides to give up.
I suppose I was just too busy doing what Debbie needed to evaluate my own status. Looking back, I never felt overwhelmed, but I have to admit I felt whelmed a couple of times.
But even if I'd begun to feel like it was too much, I was too committed to the task at hand to back down. I can't imagine letting Debbie find her own way through treatment and its aftermath. (I also had a job-and a manager-that gave me a lot of flexibility.) It never occurred to me that I had options other than to put in the time and the effort to help my beloved wife.
Treatment was broken out for us into simple phases. Chemo was hard on Debbie, the consequences were severe. Mercifully, the oncologist gave us a break after the fourth. Surgery was earlier than the usual protocol, followed by the remaining two cycles of chemo. We started chemo number 5 knowing that we had perhaps eight weeks left to get through. Enduring a challenge is much easier with a known endpoint, not too far in the future. After chemo was over, supporting Debbie got a lot easier.
Don't credit me with any superpowers. Don't praise me for deciding this way. She had needs. I met those needs without stopping to evaluate options. Maybe I'm just too stubborn to give up. Or, perhaps, I attend to her stresses enough that I didn't give my own much thought.
Jul 5, 2021
I've struggled to write an essay, 1800 words. Drafted once, hated it. Started entirely over, abandoned it. Finally found a narrative theme. Now I have a decent draft out to my favorite reviewer. The theme: I had to seduce my wife. My favorite reviewer is my wife.
Jun 19, 2021
A publishing milestone
The manuscript of our memoir has been drafted, and revised, and revised again. I'm not at all done with writing. No matter how interesting or compelling the story being told, a publisher takes an interest only if they think they can sell 20,000 copies of the book. For a nonfiction book, and especially for a memoir, the publisher needs to be shown this proposed book will rise out of the noise and show itself to be different, something readers will buy. Publishers call this an author's platform. I'm new to this, I learned about the platform rather late in the process.
The best impact, the biggest support for a platform to get the memoir turned into a book, will be related material in print. I'm now writing magazine articles and submitting them for publication, telling parts of our story of cancer care.
I've reached a milestone: my first rejected submission. Rejection notices are a natural part of writing. You stop to reconsider whether the submitted article needs to be changed or if the article needs to be better targeted to an appropriate publication, or both.
It turns out, getting published is a lot of work. I don't expect to back down any time soon.
Jun 6, 2021
Cancer Survivors Day 2021
June 6 this year is Cancer Survivors Day. I now know a cancer survivor very well.
Confronted with the unhappy diagnosis, Debbie was mostly scared. It was the ugliest, most frightening unknown she'd ever had to face, but she had no choice.
She was encouraged by friends. One said, “you're a fighter.” She didn't want to be a fighter, cancer was pretty intimidating to think of herself fighting. I told her we had a team of professionals who were doing most of the fighting for us. She just had to get through it.
Just getting through it still required her to fight, especially dealing with the effects of chemotherapy. Any given day you might have found her slouched in a recliner, on the couch or in bed. To an outsider, it wasn't obvious she was fighting. But sitting there, using her strength only when she had to, she was was putting everything she had into getting through that day. There was little I could do to help her fight, but I supported her wherever I saw an opportunity.
Even after the treatment ended, she was called on to keep fighting. She is still fighting today, to fully recover the strength she had before the diagnosis. I'm still helping in any way I can.
On Cancer Survivors Day 2021, I invite you to join me to #CelebrateLife and honor all those who are cancer survivors. Surviving is even more difficult than you think it is.
May 15, 2021
It wasn't over when it was over
Debbie's cancer treatment was dramatic enough. We were very ready for it to end. In May two years ago, chemo had been over for several weeks, radiation was about a month behind her and surgery was a half-year back.
Debbie was officially cancer-free.
We had advanced to post-treatment. One of the four chemotherapeutics was to continue every three weeks for a year. A new drug had just been adopted a year before, so Debbie was switched to the new drug.
In May, Debbie started to get restless leg. I suggested she stretch her calves before bed, which had worked for me. Stretching showed her she was getting a pins-and-needles sensation on the soles of her feet. We didn't associate this with the cancer treatment, so we tried to get by. She took a lot of acetaminophen. We started putting Lidocaine on the soles of her feet.
At her fourth follow-up infusion, the infusion nurse saw Debbie in a wheelchair again as we came in and started asking questions. She learned how much acetaminophen Debbie was taking and called the oncologist. Debbie didn't get her infusion, instead she went to the oncologist's office.
Debbie had peripheral neuropathy, a rare side-effect of Kadcilla, that new drug.
Her remaining infusions were changed back to the older drug. It took a few weeks for the symptoms to subside. Even today she's experiencing lingering neuropathy.
And that's not the end of her challenges. Recovery from cancer treatment takes longer than the treatment.
May 1, 2021
Tired but successful
A few weeks ago, on a warm spring day, Debbie and I went to a state park and walked around. Debbie doesn't go hiking, but we did stroll for a few miles on a trail, then another mile on another trail out to a promontory with a view. All told, we walked perhaps three miles over two hours. Most of the trip was on level ground, except for one, notable uphill section to get to the view.
It's a small enough event, but it's also an enormous accomplishment in Debbie's recovery. Two years ago at this time, she had only just given up wheelchair rides from the car into the cancer clinic. Two years ago, she had resumed driving herself, but stopped to calculate whether she could walk as far as needed for the errand she was on. It was a major victory – and exhausting – to go all the way to the back of the supermarket for milk, then pay for it and bring it home two years ago. She bought only the milk.
All last year, Debbie and I did as much walking as we could. We have two choices for “around the block,” 3/4 of a mile and 1 mile, each choice up and down a hillside. All winter long we didn't walk outdoors, but both of us used the treadmill. Still, as we resumed walking this spring, Debbie could tell she'd lost some strength again. The 3/4-mile block was pretty difficult at first.
Debbie is overcoming more than just her exercise regimen. Her care after cancer treatment features a drug that has fatigue as a side-effect. Another drug tends to cause vitamin B deficiency, for which a symptom is fatigue.
This park had benches at nearly every junction between the marked trails. We stopped to sit on a bench a few times along the way. We didn't walk all that fast. Even so, Debbie was pretty tired when we got back to the car. But Debbie showed herself how much strength she has recovered. She has more recovery left to go, but it's clear she's made significant progress. With a summer of walking before us, she will get much stronger this year.
Apr 10, 2021
Thanks to the virus lock-down and a hectic past few months at work, I was extremely past due for a haircut when I finally got one recently. It was my first professional haircut in several months. When we locked down a year ago, I was still keeping my hair pretty short. Debbie could give me a “number eight guard” haircut with the electric clipper. During the months of greatest risk, into the summer last year, we thought it much safer to cut my hair at home.
Debbie decided she wanted me to return to longer hair and decreed I should go to my regular hair cutter. Naturally, as soon as she said that, urgent work popped up that required my time – and my overtime. When I finally got into the shop, the stylist, Janet, recognized me. I met her during the Winter of Chemo. I was sporting a buzz cut in solidarity with Debbie while she lost her hair during chemotherapy. The visit I just made was the first time Janet had seen me with longer hair.
During my haircut, we caught up. I told Janet how Debbie was doing and went back to fill in the bigger picture. I told her Debbie's treatment experience had been so harsh we were writing a book about it. I pulled out my phone and showed her some photos of Debbie with her hair grown back, and one of the two us us, both cut short, taken a few days before the first chemo infusion started our difficult journey.
The shop is one of those “drop in” places, nothing fancy. Whoever is there when you drop in cuts your hair. It was an unexpected pleasure to see Janet again after so long.
Mar 28, 2021
I'm writing for you
It is said I should be able to name the readers I am writing for, be able to explain why that reader will find what I'm writing satisfying.
Our cancer memoir is written for women who are paying attention to the world around them. You don't have to have had cancer to relate to our story. I'd prefer you've never faced a serious medical situation, it's better for you that way.
I wrote initially thinking of Debbie, not only because it's her story but also because she's a discerning reader who can tell me why she likes or dislikes a book. (She likes our manuscript.)
Here are some more of the people for whom the book was written.
Charlotte, I wrote for you. You once told me you appreciated how your husband brought his work ethic home to his family. I can now share with you a detailed example of another husband who does what is needed – anything needed - at home.
Jess, you're dealing with a chronic health issue of your own. Perhaps you aren't dragged to the depths, but you face a lifetime of staying alert, taking care of yourself. (I'll bet you've dealt with a couple of lows deep enough to relate to Debbie's experience.) I am confident Steve has your back. I wrote for the two of you.
Gail and Anna, you've each spent your careers in healthcare. You've seen the patient experience from the professional view. I want healthcare workers to see the patient's viewpoint, not just the emotions, but also the bumbling we did when we had incomplete information. I'd be interested in discussing with you where the balance falls between enough information and spending too much time telling patients things they won't understand or use. My goal was both an interesting story and useful insights to the patient viewpoint for professionals. I think I succeeded.
Lorie, you have the biggest heart of anyone I know. You will take in Debbie's difficult story, cut right through all our difficulties and turn it into something positive. What I wrote is intended to be positive and useful, not just a sad story.
I wrote for many more people. Martha, Shannon, Linda, Tracy, Amy, Claire and Elaine, I’m trying to write a story you want to read.
Mar 6, 2021
Chemo over. Next challenge.
In March, two years ago, chemo was over. Recovery from chemo would take many more weeks, but at least there were no more infusions. An entirely new challenge greeted Debbie in March. It turns out radiation therapy is not as simple as I'd expected.
Radiation to treat cancer has some similarities to radiation from the sun. The sunburn is about the same. The big difference is most of us can decide to cover up more or to stay out of the sun after a sunburn. Going back for your next radiation therapy is not optional.
A person who sunburns easily is going to radiation burn just as easily, the skin is just as sensitive to both. Debbie's ancestry is entirely from northern Europe, she is very fair-skinned.
She got quite a sunburn from radiation therapy. Keep in mind, radiation treatment for a breast cancer patient goes onto skin she hasn't had out in the sun before. She treated her hot, red skin with cold compresses as soon as she got home from each day's radiation, then a few hours later. We kept a liter bottle of the saline for the compresses in the refrigerator. Later in the process, which was stretched out longer than the standard treatment protocol, she used a prescription salve.
Debbie's rough time getting through cancer treatment was a challenge we handled together. It's a dramatic story, but also educational.
February 13, 2021
Valentine's Day 2019
Two years ago, Debbie had completed her last infusion of chemotherapy. She was far from recovered from the effects of chemo.
I faced some limits on giving Debbie something for Valentine's Day that year. She still had to be very careful about what she could eat. Wine was out of the question. Going out wasn't an option.
So I got her roses.
I know it's customary to give red roses to the woman you've loved for decades. But red is for passion. Our love has never been just passion. It was especially not about passion in 2019, with chemo over but still very much dominating Debbie's daily experience. The roses were in assorted colors. I thought the bouquet looked better, and was more consistent with the range of our relationship. Sure, there were red roses, remembering the passion we had and anticipating the passion that wold return after her recovery. Every color of rose the florist had was mixed in, even some variegated blossoms. We're more in love after our shared trial than ever before, but that love comes in a wide range of what we do and how we feel for each other.
A bouquet of roses in assorted colors is a tradition I will maintain every Valentine's Day.
I've finished drafting the manuscript of our memoir. The next step is Debbie reviewing and commenting. The author of any nonfiction, including a memoir, needs a “platform.” I'm writing articles to submit to magazines.
Jan 31, 2021
Debbie's final two chemos
In late January two years ago, Debbie had just finished her fifth chemo and had one infusion left to go. Her experience with Number Five was both similar to what she'd faced in the first four, but also different.
Her experience was similar because she was hospitalized, for a third time, to deal with the profound and unstoppable diarrhea. She was taking two anti-diarrhea medications at the same time, they made little difference.
The change came with the hospitalization. In the hospital, Debbie was injected with a drug that stopped the diarrhea. Originally developed to treat a specific cancer, researchers noticed patients on that drug also had dramatically reduced incidence of diarrhea.
The injection worked for Debbie. After her discharge from the hospital, I took Debbie to the cancer center daily for hydration and another injection.
However, the cancer center wasn't open on the weekend. Our oncologist prescribed the drugs for me to give her injections. Getting the prescription filled was a bit of a challenge. It's unusual for a pre-filled syringe for injection to be prescribed for home use. The pharmacist at my neighborhood Walgreens did all the work to get them for us.
Yes, Debbie was a bit nervous about her husband giving her an injection, but they don't let people like me do things that aren't incredibly easy to get right.
For the sixth chemo, we moved to the injections as soon as diarrhea began. The sixth chemotherapy infusion was the only one that didn't have something dramatic happen. It's the only one that gets just a mention, instead of its own chapter in our memoir.
Debbie's experience with cancer treatment was complicated. We learned a lot, which is why we wrote a book.
Jan 16, 2021
Back to chemo
If the pathology report after surgery said there was no evidence of viable cancer cells, our oncologist would have stopped with the four chemos before surgery.
No such luck.
The pathology report had some “maybes” in it. The breast tissue had lots of dead cells, but also had a few clusters of cells which “could not be classified non-viable,” meaning the pathologist wasn't certain. Worse, the lymph nodes had scarring indicative that cancer cells had gotten at least that far away form the original tumor, but were killed by chemo.
Once the cells start moving around, you just can't take the risk of cutting corners.
So, in Mid January two years ago, we resumed chemo. This time, at least, we knew what we faced. We felt prepared, but we didn't feel ready to go through it again. Even so, the consequences of chemotherapy got her another stay in the hospital, her third.
Jan 2, 2021
Chemo for Christmas
Debbie's cancer treatment two years ago didn't follow the standard protocol of six chemotherapy infusions in rapid succession. The effects of chemo were so harsh for her, our oncologist stopped after the fourth chemo, in early November. Instead of a fifth chemo right after Thanksgiving, Debbie was preparing for surgery.
For Debbie, the break was wonderful. She regained strength, but the biggest impact was her outlook. From the beginning of September to the end of November, Debbie had droned her way through week upon week of never sleeping though the night, never feeling well, perpetual fatigue and constantly fighting dehydration caused by nonstop diarrhea.
At this time two years ago, Debbie was recovering from surgery, ten days after her lumpectomy. Surgery was the one part of cancer treatment that didn't bring on any drama.
On Christmas Eve, two years ago, she had an infusion of just Herceptin, the one drug in her four-drug chemotherapy regimen which was supposed to be given every three weeks for a year.
What would happened in January would be determined by the pathology report on the removed breast tissue and the removed lymph nodes from her armpit.
The manuscript of our memoir is complete, but it needs editing.