Posts Tagged ‘changes’
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 »
01.16.2012
Maintaining a sense of ourselves is one of the great unanticipated challenges of cancer treatment. When you have a brief illness or accident that lays you up for even a few weeks, it pales in comparison to the months or years of treatments we endure as cancer patients. Our bodies and capacities are compromised –– sometimes permanently altered. Friends and family disappoint or leave us. Our work goes undone.
Our changing selves may be less recognizable to those around us. Our appearance is altered, our habits changed. But staying recognizable to ourselves — that is what keeps the cancer from metastasizing to our identities.
Up until now, I have been so immersed in my own struggle, I haven’t had much room to take in other people’s stories beyond the blog posts I read. My friend Sarah sent me the book she wrote about her breast cancer and treatment, and I have finally had the capacity to take it in.
Sarah’s book is about many things, but in large part, it is about maintaining an identity across the years and trials of being a cancer patient.
Sarah is an artist, a gardener, a runner, a maker of beautiful things. Her book gives an account of her journey from diagnosis, treatment, and beyond that is unusually vivid and highly personal. It is an emotional story, told by somebody with a keen sensitivity to her own experiences and feelings.
As with so many of us, Sarah’s cancer upends her life. She immediately feels the intrusion on her identity:
My life is full-time breast cancer now. There is no space for anything else. Researching treatments, mainly, and thinking a lot. [...] Where did my life go? I feel down. How can I recover a sense of me, a sense of pleasure and things that aren’t cancer related?
As she adjusts to this new self, she articulates the discomfort so many of us feel:
It’s summer now and everywhere I look I see women with two breasts and I find it so depressing. I am only four months since diagnosis and have been through so much already. [...]
I have cried in joy at the pleasure of being alive. I have cried in pain over the loss of my breast. I have cried deep into the night, I have lain awake worrying about death, my death. I have felt isolated and alone, I have wept in hospital waiting rooms, I have nervously examined my own blood as it goes off to be tested, wondering if I could see anything wrong with it, how my own body has let me down like this.
The life of a patient leaves her feeling lost, like she is becoming somebody unrecognizable:
Spending the day in pyjamas. I didn’t even possess pyjamas before breast cancer. Why would I? I would never laze around for days on end. Ever. Am I turning into a slob?
Like so many of us, she notices others’ awkwardness in interacting with her:
I look so well, it seems to confuse people. I’ve been ignored by people, who walked straight past hoping I wouldn’t notice; and then there are those who pat my shoulder and look at me with a sort of pity that seems to imply that I might die soon. Is that what they think?
Even medical people struggle to bridge the divide between the healthy and the ill. In one episode, Sarah tries to be understanding of a consulting surgeon. He, like many of his colleagues, has no idea what she is experiencing.
I try to be nice to him, but I’m not getting through here. No, I think he has absolutely no idea what it feels like to get a cancer diagnosis, to lose a breast, to face treatment decisions that are weighted with life and death statistics, and the emotional impact of all that. To have this chemical and surgical menopauase. Just what it feels like, I can tell he has no idea.
The power of Sarah’s story is how she never stops being Sarah. She remains inquisitive, reflective, passionate, sensitive, taking classes in botany, sewing her own new beautiful bras, knitting, camping on the coast with her beloved Ronnie.
There is no time left for artifice, for superficial niceness, for anything that does not fill my heart with complete joy.
At the book’s end, Sarah makes it through her treatment. Even then, she frames her experience in her own terms, giving it her own meaning. She rejects the term survivor. As she says:
I don’t feel like a ‘survivor’, I don’t feel I want to be in a ‘special’ club, I don’t feel that I am in any way special because of the disease I happened to have had.
As I read Being Sarah, I found myself this book to be mandatory for all who work on oncology wards. We are lucky when we have medical people who are empathetic to our experiences, but in my own estimation, it is beyond the grasp of too many of the doctors and nurses we encounter.
I am not alone in my assessment of the value of this memoir. Sarah’s book won a commendation by the British Medical Association Medical Book Awards.
Sarah describes the emotional life of a cancer patient beautifully. I kept having those moments of recognition, of having my own experiences reflected back in a new light. Even where my experiences diverged from hers, I found her honesty gripping and raw. Like the rough coastlines and beautiful gardens that bring Sarah delight, her story has a wild, natural beauty that reminds us of the unexpected tenacity of life.
To purchase Sarah’s book, go here.
Tags: body issues, book review, changes, coping, courage, daily life, doctor-patient interaction, essay, support, survivorship
Posted in Survivorship | 6 Comments »
10.03.2011
There are so many stories I could tell about my surgery last week: how my friends, neighbors, colleagues and family rallied around me, once again, to get me through this ordeal; about the absurdity of waiting in the recovery room for 9 1/2 hours because the hospital was overfull; about specific interactions with doctors and nurses that merit closer examination.
All of these would make for good blog posts.
What I want to share with you, however, is a feeling. Feelings are fleeting but powerful.
For me, this feeling defines the experience of my surgery:
Delight.
I have had a hard time writing this post. It feels personal and intimate.
But I wanted to share this emotion, this delight, of waking up with breasts.
During my surgery, my doctor filled each of my expanders with 200 milliliters of saline, giving my hospital gown a nice A-cup sized bump. I have spent almost a year and a half with nothing, less than a flat chest. And I saw again that familiar, feminine shape on my body.
Delight.
Although there are obviously many important differences, the closest thing I have experienced to the surprise, joy, and pleasure I experienced in that moment is when my babies were handed to me after I gave birth.
I have gone through such a long journey. I have had pain and loss. And now I had something new and lovely to show for my suffering.
I am delighted.
Truly, truly delighted.
Tags: appearance, body issues, changes, gratitude, identity loss, reconstruction, survivorship, vanity
Posted in Survivorship | 21 Comments »
08.07.2011
The date is now set for the first of my reconstructive surgeries. As has been my custom, I sent out a dispatch to my support people to inform them of the date and some of the needs my family and I will have.
But you know what I forgot to include?
What the surgery was for.
I got some concerned notes from friends, wondering if I had experienced a recurrence or morbidity from earlier surgeries. Was I BRCA positive? Was this an oophorectomy or hysterectomy?
As regular readers of my blog know, I usually lay things on the table medically. I am not typically coy about what goes on.
This omission was interesting. Why had I suddenly become so uncharacteristically shy?
Blogger friend Stacey has written about how awkward it is to discuss reconstruction –– sometimes even with your doctors.
Luckily, I have felt very comfortable with my docs.
Family, friends, and colleagues… well that’s a different matter.
Part of it, I think, is that people are not as presumptuous about the “correctness” of other phases of cancer treatment. When you tell folks you have to have chemo, the skeptics may, at most, ask if you had a second opinion. But once you assure them of your diagnosis, they only offer sympathy.
Breast reconstruction becomes infused with opinion. Political opinion. Medical opinion. Cosmetic opinion.
While not everybody states their views outright, they find ways to insinuate them into conversations.
I am familiar with this dynamic. It reminds me most of the kind of indirect (and sometimes quite direct) judgments I felt in conversations about childbirth and breastfeeding.
For this reason, I am going to provide here my personal answers to the FIQ’s in conversations about my choice to pursue reconstruction.
What are FIQ’s?
I just made them up.
Frequently Insinuated Questions.
So here goes.
Why don’t you just embrace your new body?
Yes, this is the body that let me live. But it is also a body of trial and grief. It is a body that reminds me of what I have endured every time I dress and undress, every time I wear a swim suit, every time I hug. My happiest post-treatment moments are ones that do not foreground my cancer experience. I would like to have more of that pleasant amnesia around my body itself.
I have been told by more than one person about women who embrace their mastectomied bodies by tattooing their scars. Cool on them. When people stare at you, you have given them something to look at, have changed the meaning of the stare into, “What an awesome tattoo.” I think that’s great.
But it doesn’t work for me. Aside from not being a tattoo person, I am not a candidate for tattoos, between the extensive radiation and the lymph node dissection which leaves me prone to infection. I sometimes get the feeling that I disappoint people by not being a badass tattooed survivor.
Why would you want to endure more surgeries?
I have my reasons. Of all three events in the Triathlon from Hell — chemo, surgery, and radiation — I tolerated surgery the best. It seemed to be the one place where my prior fitness paid off.
I don’t want to endure more surgeries. But cancer often forces you to choose between crappy options.
The best preparation I have had for this aspect of cancer treatment is a game I played with my brothers growing up. We would pose gruesome hypothetical scenarios and ask each other to justify our choices, like, “Would you rather freeze to death or be burnt alive?”
Other women may not experience it this way, but for me, choosing between my mastectomy scarred body and more surgery is one of those would you rather scenarios with no right answer. Choose your pain: the accretion of small psychic insults for the rest of your life, or intense, short term suffering for a physical approximation of what you have lost. On the balance, my personal answer, after much self reflection, is that I would rather endure 9 months of surgery.
I do not judge other women for making different decisions. I wish I did not feel judged by others for my choice.
Why didn’t you just get reconstruction when you had your mastectomies?
If I had insisted, I could have. My radiation oncologist told me clearly that it would risk compromising the treatment and it would make for a lesser cosmetic outcome. My priority during treatment was to save my life. I figured I would deal with the cosmetic aspects at a later point, once I knew that is what I wanted to do.
The surgeons at my hospital recommended waiting 12-18 months for my tissue to heal after radiation. Delayed reconstruction has been psychologically hard, but the morbidity rates are lower than reconstruction on radiated skin. In some ways, it has given me an opportunity to live with a mastectomy body and have a clear sense of my own feelings about that. I will not have to wonder how it felt.
Are breasts really that important to you?
Growing up, I had a friend who was born with noticeable asymmetry in her face. Nobody questioned her and her family’s decision to get plastic surgery for her when she got old enough. Faces are part of how you present yourself to the world, how people see you and interact with you.
Later, my friend Josh had part of his arm removed to treat sarcoma. He wore a prosthetic initially, but found it cumbersome and finally decided to let everybody deal with their discomfort around his missing body part. He used humor to help put people at ease, like about the particular danger he would pose if he texted while driving.
So where do breasts fall on the spectrum of body parts? Do non-conforming breasts socially require surgical correction, the way that we all understood my friend’s facial surgery?
I imagine breasts fall somewhere in the middle, and different women answer that question differently.
Here is where I land. I don’t like choosing my clothing around my surgery. I don’t like the extensive strategizing I end up doing when it comes time to change in the locker room. I don’t like the sinking feeling I get every time I undress, no matter where I am. I don’t like the feeling of cuddling my children with prostheses.
I have spoken with enough women who have made different choices to get a sense of the trade-offs. I have no illusion of “becoming whole again.”
But I have listened to other’s stories, and I have spoken with my doctors about the medical realities.
I know of a woman in her 40s who enjoyed swapping out different sized prostheses –– or wore none at all –– to suit her fashion choices and activities. I know a 90 year old woman who had a radical mastectomy in the 1970s who told me she never felt comfortable with her modified body. I know a small-chested BRCA positive woman who got prophylactic mastectomies without reconstruction and felt surprised at how much she missed having breasts.
There is no one answer here. But I would appreciate trust from people I know that this is the right choice for me.
Tags: appearance, body issues, boobs, changes, coping, essay, healthy people, identity loss, reconstruction, straight talk, survivorship, vanity
Posted in Survivorship | 56 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 »
