About two or three weeks before my diagnosis, we had a lice outbreak at my house. As a working mom, I was overwhelmed by the work of nitpicking three heads of thick hair, the vacuuming, and the laundry. I estimated it took about 20 hours of work to rid ourselves of that plague.
I felt so put out. I griped on Facebook and elicited much assistance and sympathy.
This is not my child. Not thick enough hair to be mine.
Plus she’s smiling while getting treated. My kids like to complain and say “Ow!”
When I got my diagnosis a few weeks later, my status update read:
Dear God, I’m sorry for complaining about the lice.
Fast forward 2 years later to this past week. My husband goes away on his first weeklong business trip since my illness, leaving me alone with the kids. He is worried –– we had assumed that my post-op pain would be resolved by now, and I am still fairly limited. I am worried –– several work deadlines have piled up for the week that he’s away.
He leaves Tuesday evening. I get the kids to school Wednesday morning and go exercise. As I am leaving the gym, I get a phone call from my kids’ school.
“Your daughter has lice. Please come get her.”
When I arrive at the school, my other daughter has them as well. We then check my little boy, and sure enough, he has them too.
I dash off a few emails to the people I was to meet with that day, canceling some, re-arranging others.
The kids and I stop off at the grocery store to pick up nitpicking supplies and stay-at-home activities such as cookie ingredients, mani-pedi supplies, and coloring books.
“Just think of this as our lice-cation,” I tell them.
I sit in the bathroom, skyping into meetings, picking my way through their piles of thick brown of hair while discussing readings with my students and projects with my colleagues.
The next day, I take them to a professional lice picking place. The girls’ hair takes over 3 hours apiece with the pros. I pay a ridiculous sum that I am going to try to get reimbursed by insurance. None of this daunts me. The kids go to school the next day, and my week has been seriously disrupted.
I don’t like to give cancer any credit for anything good. It is not a gift, and if it were eradicated tomorrow, the world would only be better off.
But there is no doubt that my trials over the past year have put minor plagues like this in perspective.
Lice are inconvenient, but you can bake cookies and watch movies while you deal with them. And nobody is going to die.
Nothing like getting plagued twice to recognize how much you have changed. Time off without fear of death can be a kind of vacation. I can ask for help and deal with the consequences later. I do not have to power through everything alone.
I have always had a healthy carpe diem streak in me. I like to let loose and have fun.
Less than two months before my diagnosis, I had a conference in Amsterdam. In addition to attending scholarly talks and meeting with colleagues, I enjoyed the city with friends.
The boat ride pictured below was particularly memorable. Cruising through the canals with a bottle of wine is so lovely.
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I had cancer in this picture. I had no idea.
I am gearing up for surgery on Thursday. I am, in the words of my middle child, getting ready to be pulled under by the cancer sea once again.
Only this time, I have had some warning. I have some of my health and fitness back again. Instead of the shock of diagnosis with the uncertainty of the treatment, I know I’m going in for some pain, but I will get something on the other end.
I’ve managed the prospect of more suffering by trying to use a principle of opposites: I’m filling up on Happy.
In fact, I’ve been on a bit of a carpe diem bender.
My family & I took off for a long weekend at the beach.
A week later, I had a work trip to Rome. Once again, in between official duties, I found opportunities to have some fun.
Can you see the Coliseum in the background?
I ate yummy food and saw beautiful art.
That granita was amazing.
Then, as if that weren’t enough, I went back to Holland to give a talk at a university.
Of course, I managed to fit in some fun.
Look! I’m back in the same boat!
As a final hurrah this past weekend, the girls and I went to a Taylor Swift concert. She is their musical idol.
Watching my daughters grinning from ear to ear, singing every word as they watched her show, filled my mother’s heart with loving joy.
Could it get any better?
Actually, yes.
Two seats away from my eldest sat Martina McBride. She is a hero for many of us cancer survivors.
She wrote an amazing song called “I’m gonna love you through it” that seriously could be written for me.
I went up to her and let her know how much her song meant to me. She was incredibly gracious.
Meeting Martina reminded me that I can get loved through this part, too.
When my body is hurting in the coming weeks, I will be able to close my eyes and bring up lots of great moments.
Trust me. I’m having fun, but I will never, ever say that cancer is a gift.
Life, on the other hand, with all it has to offer, most certainly is.
———–
If you haven’t seen Martina McBride’s video, get out your hanky and watch it now:
“♪ Cancer don’t discriminate or care that you’re just 38 with three kids who need you in their lives.. ♪.”
This is one of those race photos they try to sell you. Hehe.
I took May off, but was back at it again in June, this time in Seattle.
Me and my Seattle running buddies. They stuck by me the whole way.
Interesting Fact: We have 10 kids between us.
How do I explain this marathoning madness? Simple. I know myself.
When I asked my oncologist what I could do to minimize my odds of recurrence, she said, “You will hear a lot of things. But there are only two things we know for sure. Exercise regularly and keep yourself to your lowest healthy weight.”
I am a compliant patient, but I knew I would be even more compliant with these goals on the horizon.
So that’s that. I don’t want the cancer to come back. Plus there are added bonuses.
When I run regularly, I feel better. I’m more confident in my body. It’s the only time I actually enjoy my booblessness.
Vigorous exercise marks a clear before/after for my treatment. I couldn’t run during treatment because of my extreme nausea and pain. Now I can.
Running is an individual sport but runners compete against themselves. “To PB” is a verb — it means to get your personal best time.
So I thought that by running three races in four months, I would PB by the end.
I was wrong. I PW’d.
That’s right. I got my Personal Worst.
I’m not one for excuses but I do like a good story, so here goes. Pull up a chair and stay awhile.
Devoted readers of my blog may recall that I started an experimental use of an old medication, Metformin, in early May to prevent the cancer from recurring. My oncologist reassured me that any side-effects would be short lived. She obviously forgot she was talking to the side-effect queen.
I was so nauseous, I ended up back in bed most evenings. My doctor told me to take Zofran, the big guns anti-nausea drug. It only kind of helped and heaped on new side effects like dizziness and constipation. It was one thing to endure those when I could lie in bed all day during chemo. But I’m trying to hold down a full time job and raise a young family here.
I tried cutting my dose in half, reasoning that taking some of the drug was better than none of it. They had to back off on my chemo dose because of my bad reactions, so why wouldn’t I do the same thing with the Metformin? When the nausea persisted, diabetic friends offered suggestions. Cut down on your carbs. Take it with meals.
I tried all of the above, to no avail.
Worse yet, the nausea and related fatigue started to cut into my running. Exerting one’s self while dizzy and pukey is highly unappealing. As I pulled back on training, I started losing some of the ground I had gained in my wellness. I went from feeling better to pretty bad again.
The morning of the Seattle race, I took my medicine before the run.
I spent the first 8 miles feeling nauseous.
“Slow down a little, I’m sorry,” I kept telling my friends.
They obliged, insisting that it was all about running together.
And we did. We ran the whole way, except for the water stations. And my insistence on high-fiving the kids who came out to cheer for the runners. And to thank the people carrying flags to remember fallen soldiers.
Oh, and the potty stop.
But we ran and we ended with the uniquely exhilarating feeling of delicious endorphins coursing through our veins.
Even a PW wasn’t terrible.
But that was the beginning of the end of my affair with Metformin.
When I got back home, I had an evening where I became arrested by nausea. That was the final straw.
Why, I reasoned, am I trading in something I know will help me (exercise) for something that might help me (Metformin)?
So I stopped taking the pills.
Today I met with the nurse in the Survivorship Clinic. She’s a runner so she appreciated my PW tale. She has seen a lot of people on Metformin and her opinion was this:
The running is more important. The drug is a hypothetical. Metformin is hard for some people, and it sounds like you are one of those people. Quality of life matters and you need to keep exercising.
Cancer and survivorship often involve selecting between two crappy options. It feels unsettling not to do something medically to keep the cancer from recurring. But it felt even worse when I tried to.
My PW clarified the best of the crappy options. Stop the drugs and keep running.
And keep finding ways to hang out with good friends. They’ll make it fun, even when it is your worst time ever.
During treatment, we are thrust into an uninvited, relentless Present Tense. We put aside our plans and obligations and focus on our health. We take leaves from jobs, renegotiate our commitments, garner support from people who care about us.
The future becomes necessarily more tentative. You may not be there to meet it. Or maybe you will, but who knows in what condition. How will I feel next week? Tomorrow? An hour from now?
When you are healthy, it is easy to plan your life with some confidence. When you are ill, there is hesitation, particularly if you are used to being dependable.
Time changes shape. Horizons shorten. The Present Tense of crisis is fueled by adrenaline, colored by anxiety. There is so much to worry about. Health. Money. Health. The inevitable dramas with family and friends.
Health.
As if cancer was not enough strain, imagine throwing young children into that mix. Their needs are perpetual. They are, by design, dependent. This is their childhood.
Despite the insistent, unwelcomed Present, a mother makes an effort to create a semblance of normalcy and joy.
But the strain is always there. A child, naturally, wonders about the future. “When I get bigger…”A mother pulls back, reluctant to imagine a time that she may be robbed of sharing.
My family has been in this state of crisis. Like a person huddles over an injury to protect it from the world, we have been doubled over in the wake of my cancer. We have been wounded. The primary injury has been tended to, but the peripheral problems have only been uncovered, including this unrelenting sense of crisis.
In addition to the physical devastation of treatment, patients and their families must also contend with a new financial reality. On average, American cancer survivors pay $5,000 more a year in medical expenses than people who have not had cancer. That takes a lot of options off the table for the typical middle class family. Vacations go. Summer camp, music lessons –– winnowed down. That certainly has been our experience.
Last week, we got a reprieve. We participated in a beach retreat with a new non-profit called Little Pink Houses of Hope (LPHOH). Founder Jeanine Patten-Coble, herself a breast cancer survivor, recognized that women are not the only ones impacted by breast cancer. An entire family is affected.
LPHOH gave my family use of a beach house, donated by a couple in Kill Devil Hills, North Carolina. LPHOH hosted several families last week. All of us arrived at these homes, stocked with groceries, armed with gift certificates to local merchants and restaurants. Jeanine told us that her goal was to keep our wallets closed for the whole week. Just hearing those words brought our stress down a few notches.
Jeanine and the other “volunstars” provided us with a schedule of optional activities, from kayaking to jewelery making, all designed to give families quality time together. They wanted us to feel comfortable and cared for. Our challenge was to open ourselves up to receive.
It took us a few days before we realized just how tightly wound we were. You don’t realize you are hunched over until somebody lays a hand on you and reminds you how it feels to stand up straight. Midweek, the tight knot we were started to loosen a bit. We breathed more deeply. We smiled more easily.
We shifted into the pleasant Present Tense of a lovely vacation. The no-watches-needed Present Tense of an afternoon by the ocean . The wake-up-and-see kind, as you lazily peek back at the sun through the curtains and anticipate another adventure.
I was able to go on a Ferris wheel at a fair with my children, teaching them how to be brave.
I played in the waves with my son, sharing the awesomeness of the ocean.
I collected seashells with my girls, seeing beauty around us.
My husband sang as he kayaked down a river, while his punctured boat slowly sank, requiring the occasional bail out. A perfect metaphor for life with cancer, to be sure.
As we left the cocoon of the retreat, we came back restored, finding more joy in each other and our lives, together. Our time seems lighter, even in the ordinariness of our daily lives.
Along with seashells and sandy shoes, we have brought home a bit of the pleasant Present.
Academic conferences are, among other things, a kind of reunion. My career has traversed a number of communities. Every place I have been, I have made friends and built relationships. We often keep distant tabs on each other, mainly through our work.
In between paper sessions and talks, the life of the conference takes place over meals, coffee, and receptions. That’s when you get to see your old friends and catch up. It was interesting to re-enter that world this past weekend after having gone through a great personal challenge.
I am not going to write about the few people who seemed to be avoiding me. I am going to give them the benefit of the doubt that they did not recognize me with my corkscrew curls, which only got screwier in the New Orleans humidity.
I was pleased with the grace that a number of my friends and colleagues showed me. I thought I’d catalog them here since I am often told by witnesses to the life tragedy of cancer, “I’m not sure what I should say.”
A grad school friend
We were walking together, and she stopped and turned to me. “Can I just say how sorry I am for everything you’ve been through? When I got your news, it hit me so hard. There are so many ways our lives are similar, and you are the first of my contemporaries to deal with this. I am so glad you are doing better.”
A former professor I knew mostly at a distance.
“I want you to know that I am so proud of you. I love your blog and have sent a number of friends there. What your doing is great.”
A former mentor
Meaningfully: “I am so glad to see you here.”
Friends I hardly ever see but I can really talk to
“We can talk about this if you want, but we don’t have to.”
(And they meant it 100%.)
Friends who faced their own challenges the past two years
“I am so sorry I couldn’t reach out. I was so swallowed up in my own life. But I thought about you all the time. And I’m so glad to see you.”
****
It’s normal to have long gaps between seeing colleagues. At one reception, someone I hadn’t seen in over five years came up to me, brightly saying, “Wow! Lani! I love your hair!” I just smiled and said thank you.
Then he looked at me intently and said, “So how’s it going? How have you been?”
I had to say that the true answer makes terrible cocktail party conversation, and then outlined briefly the chronology of events.
I felt like the wet blanket at the party.
Overall, it felt like another important transition back into my old life. I am glad to report that I was received with a warm welcome.
