Archive for the ‘Wellness’ Category
02.02.2012
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 | 6 Comments »
07.05.2011
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 »
06.24.2011
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.
Tags: attitude, changes, coping, daily life, essay, gratitude, mental health, parenting, support, survivorship
Posted in Survivorship, Treatment, Wellness | 16 Comments »
05.09.2011
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.
Tags: changes, clinical trials, coping, fatigue, self-advocacy, survivorship
Posted in Survivorship, Treatment, Wellness | 20 Comments »
03.21.2011
When I asked my oncologist how I could get on the good side of the recurrence statistics, here is what she told me:
“You will hear a lot of theories. But there are two things that we do know influence recurrence. You need to do aerobic exercise a half an hour a day and keep to your lowest healthy body weight.”
I have been a compliant patient all along. Being a compliant survivor is a little more challenging. Although they often seemed to stretch on forever, my treatments were time-limited. I could figure out ways to keep going back for the chemo that made me feel so sick or the radiation that turned my skin raw, in part because I knew it would end.
I have generally kept fit in my adult life, but like most working moms, there have been times of greater attention to self-care and times where that gets fairly neglected.
With my doctor’s words, I felt I could no longer weave in and out of an exercise regimen. It had to become like brushing and flossing, something that feels wrong to skip.
I know myself. I needed to structure this exercise task, give myself an exciting goal, cut the Rest-Of-My-Life time frame into a more conceivable chunk.
So I signed up for the New York City Half Marathon. I raised money for an organization I respect, the I’m Too Young for This Cancer Foundation. It felt like a deliberate push back to the disease that has robbed me of so much.
I got my training program lined up and wrote it in my calendar. It was non-negotiable. I had to figure out how to do my runs, whether there was rain, sleet, or a feverish child to tend to.
I got my Twitter pals involved. On days where I needed motivation (which was fairly often), I would dedicate my runs to specific friends who had shown me support or to groups of people I was thinking of. I dedicated long runs to the Newly Diagnosed, to Those Whose Suffering Cannot Be Touched by love or medicine.
These are some of my awesome cheerleaders on Twitter.
The dedications would elicit cheers from my tweeps. That helped me stay more focused and determined. I even got training tips from fellow runners.
I loved training because my increasing fitness was so concrete. Since I had my last procedure at the end of December, in early January, I was unable to complete a mile without stopping to walk. As I trained, I could run 1 mile. Then 2. Then 5. I even got some speed back. I noticed my sleep and concentration improving in other parts of my life. Running felt like a direct route to my recovery.
Yesterday was a lovely, chilly day in New York City. My childhood friend and I lined up at the starting corral and chatted for the better part of 13.1 miles. We went through Central Park, Times Square, and down along the Hudson River. New York City has been a backdrop for certain phases of my treatment. I came here for my second opinion when I was newly diagnosed. I came with my family to visit friends after my chemo was complete. And now here I was, with my re-emerging health, running through this iconic landscape. I felt strong the whole way and sprinted across the finish line.
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Thank you so much to all of you who supported me and helped me reach this milestone. I really feel like I am gaining an important part of my life back.
Tags: advocacy, attitude, coping, courage, exercise, gratitude, recovery, social media, survivorship
Posted in Survivorship, Wellness | 38 Comments »
