Archive for the ‘Wellness’ Category
With no big medical events on the calendar, I am, in many ways, more normal than I have been in almost three years.
But yet I am not.
I don’t need to rehash the combination of fatigue, lymphedema, fogginess, and trauma I have been left to sort through. I’ve covered that mess already.
If I am not my Old Self and I am not a Cancer Patient, who am I?
For instance, I like to think of myself as reliable. Right now I am not.
Will I ever be again?
Much of recovery involves managing expectations, both my own and other people’s –– and on an uncertain timeline.
It’s not easy. Sometimes I have focus and energy. Sometimes I don’t. Sometimes I have pain and exhaustion. Sometimes I don’t.
I have not found any predictable rhythm to it.
I have been trying to make room for this uncertainty: don’t overcommit, stay forgiving of my limitations. Let myself rest, bow out. Listen to my body.
Stay realistic, despite the ways I am champing at the bit to get back to that magical land of How Things Were.
Take myself off of a set timeline, let things unfold as they may. People call it a New Normal, but there is nothing normal about it.
If my wellness were the only uncertainty, maybe I could manage to make space in my life for this to work itself out.
But there is that other shadow in my life, the fear of recurrence.
With odds somewhere between 20 and 30%, most breast cancer patients cannot ignore that reality.
It’s a haunting and existentially impossible situation:
What if I give myself time, stay gentle in my expectations, and I get pulled up short again?
How do I let Time Heal All Wounds when I am Racing Against Time? When life may pull another fast one on me and the clock may abruptly stop?
Tags: attitude, changes, coping, daily life, fatigue, healthy people, identity loss, survivorship
Posted in Survivorship, Wellness | 17 Comments »
I have not disappeared, dear blog readers. Summer started around here, right after my last post, complete with graduations, barbecues, summer camps, fireflies, and mosquitoes.
Now that my last surgery is over, I have the goal of finding new equilibrium in my life. Under the best of circumstances, managing a career, family, friendships, marriage, and health is a big undertaking. When 2 years, 7 months, and 11 days of cancer treatments get thrown into the mix, it becomes impossible. So much has gone to the wayside.
My pact with myself is to start picking up the pieces of all that has been cast aside.
My two biggest challenges? Limited energy and impatience.
I still get worn out by the end of the day, sometimes to the point where I have to climb in bed. My to-do list is long, and it includes giving more of myself to the people I love.
I have tried to meet this challenge by managing my energy. Everything and everyone is now sorted into two categories: energy giving and energy draining. Things in the latter category are ruthlessly put aside. Children, are of course, a bit of both, but I am their mother and I love them. To give them more of me, I am cutting back on some hours at work while they are out of school. I am glad to have this as an option, even though it may make the financial equilibrium a more distant reality. The soul satisfaction I feel when I bake a pie with my daughter, take my kids to the park, or just hang out and snuggle lets me know that I am on the right track.
It’s hard because part of me is used to my take-no-prisoners approach to catching up when I fall behind.
But I am so behind. And when I hit the wall, it is made unforgiving, solid brick.
I know I won’t knock out all the things I wish to do this summer, but if I can give back to the people I love, I think I will be happier.
Tags: changes, coping, daily life, fatigue, identity loss, mental health, parenting
Posted in Survivorship, Wellness | 14 Comments »
I had my 6 month oncology check up yesterday. I am happy to report that all is well.
My husband came with me because we were feeling very unnerved by the intensity of the fatigue I have been dealing with the past few weeks.
My risk for recurrence is 20%, and the most likely time for it to happen is 2-3 years after diagnosis, which is where I am right now.
My blood levels were all normal, but the doctor believes that it comes from trouble metabolizing the anesthesia from my recent surgeries.
Even perfectly healthy people have setbacks with anesthesia. It takes 6 months to leave the body. Because of the damage from chemo, my liver
is likely only functioning at about 80% of normal, making any metabolic process more challenging.
Cancer: the gift that keeps on sucking.
Anyway, the doctor gave me low dose Ritalin to help me through this time. The fatigue has become really debilitating. I can take a 3 hour
nap, feel fine for an hour, and then feel tired again. It’s undermined any attempts to exercise consistently. My husband has had to pick up more
than the usual slack.
I have 3 kids and a big job, so I know tired and even exhausted. This fatigue is more like a light being dimmed from the inside. The bottom
is deeper than tired or exhausted can explain. I took a wee dose of Ritalin this morning (half of what the doctor normally prescribes,
given my sensitivity), and I already feel like the lights have been turned back up.
The plan is to do this transitionally until I get some more mojo back.
Will keep you posted.
Tags: changes, chemo, chemo rollercoaster, coping, fatigue, side-effects
Posted in Survivorship, Wellness | 7 Comments »
Since I finished treatment, I’ve been a half-marathonin’ fool.
I ran the NYC in March with a childhood friend.
I ran the Nashville in April.
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 helps me combat post-treatment fatigue. I sleep more deeply and have more energy when I’m running.
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.
Tags: attitude, body issues, changes, coping, courage, essay, exercise, fatigue, healthy people, identity loss, nausea, running, side-effects, survivorship
Posted in Survivorship, Wellness | 29 Comments »
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.
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.
Tags: attitude, changes, coping, daily life, essay, gratitude, mental health, parenting, support, survivorship
Posted in Survivorship, Treatment, Wellness | 18 Comments »