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.
I’m sorry I haven’t posted in awhile. My regularly scheduled life has demanded much of me lately. I also have been contending with fatigue. It’s been a bit of a dance — keep on top of life and manage to rest and exercise.
It’s a little scary to have experienced a sense of ascension from the Cancer Pit and then feel it tug me back in. Aside from my own physical symptoms, last week two online friends died. Both were parents of young children. Both were around my age. Sarah had been in remission and faced a recurrence that ultimately killed her.
This is Sarah. She made a promise to herself that she would die with her hair.
Derek wrote about going through the same treatment as an online friend on the same timeline. His friend’s treatment worked, but his did not.
These events renewed my sense of urgency about improving our understanding of cancer –– not just breast cancer, but the ovarian cancer that killed Sarah and the colorectal cancer that killed Derek.
Last week, I also participated in my first clinical trial. I had learned about it through Susan Love’s remarkable project, The Army of Women (AoW). I had a doctor’s appointment anyway. It only involved drawing a few extra tablespoons of blood and a follow-up phone call. The researcher I spoke with said that AoW has made a huge difference in their ability to recruit enough subjects for their study. Across the board, she said, the participants have been eager to help.
I had intended to do another clinical trial at the end of my treatment, but it didn’t work. For that trial, I would take Metformin to prevent a recurrence. Because my tumors were hormone-receptor negative, I am not taking anything like Tamoxifen or Armidex to prevent recurrence. My chance of recurrence is around 20-30%.
My oncologist had explained to me why they were prescribing the diabetes drug to breast cancer survivors. They had done meta-analyses of survival and recurrence rates in breast cancer survivors. Metformin seemed to significantly lower recurrence rates when they looked at populational data, controlling for other factors like weight, age, and fitness. They thing it has to do with cortisol suppression.
I ended up not being able to do the clinical trial because the Metformin shipment got held up in Canada. By the time it arrived, I was no longer qualified because of my date of diagnosis. My doctor offered to prescribe it to me for off-label use.
I hesitated. There are potential gastrointestinal side effects to Metformin. And for those of you who are new to my blog, you may not realize that I am a Side-Effect Queen. No discomfort, however small, seems to pass me by.
Then Sarah and Derek died.
That was it.
I called my doctor and decided I couldn’t bank on my fitness, youth, and good attitude to prevent a recurrence. I felt better about doing something at a molecular level that might interfere with tumor formation.
I spoke with three breast oncologists who thought the Metformin was a good idea. My blogger buddies who went to the National Breast Cancer Coalition conference and reported that the Metformin trial seemed like the most promising thing out there in preventing recurrence.
I needed to make a choice. The consensus was that this seems like a good one.
Because if my cancer comes back, it will be metastatic.
Diarrhea or metastatic cancer?
I’m going to take Door Number 1, Bob.
Let’s hope I have made the right choice.
If you are a woman in the US or Canada, please sign up for the Army of Women. You don’t have to be a cancer survivor. There are a lot of clinical trials out there that just need participation. We need a better understanding of cancer. Knowledge is power.
I learned so many amazing things at the Life Beyond Cancer retreat this past weekend. I can’t wait to tell you about it all.
The first thing I have to share is Brené Brown‘s TED talk. She came and spoke with us last night and it was wonderful. Her research is about shame and its relationship to vulnerability. She uses her research –– thousands of interviews with people about these subjects –– and uses it to think about what it means to live wholeheartedly. She talks about compassion and connection and belonging.
She talks about the valuable of vulnerability, the ways that our culture discourages us from learning to be vulnerable. This was particularly powerful at LBC, since she was speaking to a roomful of cancer survivors. If anybody knows how difficult and important it is to be vulnerable, it was us.
Please take 20 minutes to watch this video. She is a great speaker. As she says, a researcher-storyteller.
Here is a link to her book. Let’s read and discuss at some later date. Maybe a twitter book chat?
This may seem like a shallow post for my last day of treatment. I should probably be blogging about the deeper meanings of this time. I think my emotions are being processed on a deep, nonverbal level right now. I will surely share the insights I glean from this experience in future posts.
In the meantime, a perhaps frivolous yet meaningful matter that’s taken me 18 infusions to figure out.
What is the ideal fashion for infusion day?
The port is awkward. It’s in my chest. I don’t want to undress to have it accessed. People in chemo are often hairless and need to keep their clothes on and the chill off.
I’ve figured it out, Chemobrothers and Chemosisters.
First, start with a shirt whose neckline can stretch downward to reveal your port.
If you look closely, you can see the plastic wrap over my numbed out port.
But when this stretches down, your neck is really exposed. You feel naked and cold.
So, I knit myself this adorable neckwarmer. It pairs perfectly with the shirt.
If you need a little punk rock vibe to help you feel like a cancer ass-kicker, I suggest pairing it with a leather biker vest.
This would have been awesome with my chemohawk.
And voilà! Easy access without the chill.
It took me 18 infusions to figure this out. Hope you can benefit from this important wisdom.
