02.15.2012
Grief, for me, is a wee hours thing.
I wake, disturbed, and see the hour on my bedside clock glowing 4 or 5.
My heart is heavy, with thoughts of Rachel or her beloved Anthony. Once again, I feel the troubling dissonance between pink bows and teddy bears and the disfigurement and death that is the reality of this disease.
I feel pain at her loss, bewildered by my lack of space for grief. On the surface my life moves forward, but I know inside my friend is gone.
Mourning, for me, is done best in the comforting receptive presence of others. I have had to search for that.
Life online is good for building community and making friends.
But it is overfull with voices, noise, and words.
My loss is an absence in my virtual world but online life is a place that offers me little comfort or healing.
The greatest comfort has been my blog, which has given me the chance to speak my grief. The comments I have received feel the closest to comforting receptiveness.
Thank you for that. It means a lot.
Tags: coping, grief, social media, talking
Posted in Uncategorized | 13 Comments »
02.09.2012
Last night I dreamt of Rachel. We were both young and healthy and on an adventure together. At one point it seemed like we were in the South Pacific, and at another it seemed like the Mediterranean. No matter. Our adventure was about meeting people and sharing experiences, not seeing the sights.
As my grief over her death sinks in, I am starting to see the shape of the hole it has left in my life. This dream offered me a clue. Our friendship took place through an almost unspeakable experience, not a fixed place in time.
If I were to answer the question, ‘What did you do today?’ most likely I would describe activities like running errands, shuttling children, going to work, and cooking dinner. Rachel was not a part of the identifiable, geographically-bound fabric of my life.
But if you asked me what was in my heart, where my mind was, what concerned or upset or preoccupied me, I would say the questions of my health and mortality, the pain and injustice of being young with cancer, the persistent experience of people misunderstanding this disease that has upended my life. It is there that you would immediately understand who Rachel was to me and the nature of what we shared.
If my life is a quilt, our friendship did not live in the panels. It lived in the seams.
In fact, I have never been in the same place at the same time as Rach. We had plans to meet in real life, in a gathering of our online friends, next month. Although we had never occupied the same physical space, we shared a frightening psychological one. We both had breast cancer at an improbably young age. I have not had metastatic cancer but I lost my 36 year old stepbrother to it less than 2 years before my own diagnosis.
So where did our friendship live? It was born on our blogs, blossomed over email and social networks, took root on skype and phone chats. We were friends in all the in between places of everyday life.
We shared this experience, this hell of cancer. We talked about many things but one of our recurring themes was the Stuff You Can’t Write About. Although we were both plain spoken and unflinching, there was still territory in this shitstorm too personal, too raw and devastating, to broadcast to outsiders. I knew I could share those places with Rach and she with me. Even if we did not know firsthand exactly what the other spoke of, we could count on each other to listen and understand.
The emptiness I am left with is distinctly modern in its shape. A void in my twitter stream; a dim bubble on my Skype. But the depth of our bond belies the superficiality of those electronic connections. Our friendship went beyond the physical to the realm of the existential.
My life may look the same on the outside but it is lonelier without Rachel around to share it with.
—–
There have been many beautiful tributes to Rachel on different blogs and I am sure there will be more to come.
Here are some of them:
Rachel’s Obituary on her blog
Jody Schoger’s tribute
Gayle Sulik’s collection of Rachel’s incredible comments on the Pink Ribbon Blues blog
Marie remembers on Journeying Beyond Breast Cancer
AnnMarie talks about Rachel’s contribution to our community
Tags: eulogy, grief, loss, social media, support
Posted in Uncategorized | 29 Comments »
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 | 7 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 »
01.08.2012
I have had a hard time writing about reconstruction. It doesn’t quite fit the heroic cancer narrative of kicking ass and taking names. It’s more personal and intimate. Reconstruction serves quite literally to rebuild not to cure, making it awkward for an audience.
Nonetheless, I have had some interest bubble up through my various connections about what I am up to and what it is like. I asked my friend and fellow blogger Katie from Uneasy Pink to generate some questions for me to answer on the topic. So, here we go…
How did you chose from the alternatives?
I had delayed reconstruction, largely because of my radiation. Radiation damages skin and muscle on your chest, thereby completely altering your reconstruction options. My doctors uniformly advised me against starting reconstruction until 12-18 months after radiation because of the increased potential for complications with both my medical treatment and the cosmetic result.
This is my attempt at making a decision-tree illustrating reconstruction options.
A number of choices were not available to me because of the specifics of my case.
Once I began reconstruction 15 months after radiation, my goal was the best cosmetic outcome with the least chance of complications or damage.
Women undergoing breast reconstruction can choose broadly between tissue reconstruction and implant reconstruction. Because of my radiation treatment and body fat content, I was not a candidate for tissue reconstruction. (You can read more about these options here. There is also a newer kind of tissue reconstruction that I did not have access to, although I would likely be a candidate for it.)
Among the options for implant reconstruction, I chose bilateral lat flaps with tissue expanders and silicon implants.
Lat flaps involve taking some latissimus dorsi muscle from the back and moving it to the chest to create a shelf for the breast implant.
Tissue expanders work to stretch skin to make room for saline or silicon implants.
Because of my radiation, I had to do lat flaps on the right side. The skin was too damaged to just place tissue expanders and implants under the chest muscle (the alternative). I could have opted to do the flap on one side and the expanders under muscle on the other, but it would have compromised the cosmetic result because of the inherent asymmetry. Although I had some hesitation around the lat flaps, my doctor reassured me that they take a very small amount of muscle to make the shelf for the implant.
I chose the silicon implant because it was lighter and more natural feeling. My surgeon reassured me about the quality of the silicon implants he uses. The saline also risked dimpling and sloshing when I run.
What it have the surgeries been like for you?
I had never had surgery before I had cancer. Through all the treatments I underwent as a cancer patient, I had the easiest time with surgery. My tolerance for anesthesia and overall fitness seem to play into this.
That being said, having surgery after chemo as I did with my mastectomies was a whole different ballgame compared having surgery when I felt fit. Although the first of my reconstructive surgeries was the most difficult (it involved the lat flap construction and tissue expander placement), my suffering paled in comparison to what I experienced with my mastectomies. I was in the hospital for four days and had 6 drains in all. Definitely not fun. But waking up with an A cup nearly brought tears to my eyes.
In what ways has it met/exceeded/fallen below your expectations?
I would say that overall, so far, this processes has met or exceeded my expectation. The first surgery was tough, but I regained mobility quickly. Interestingly, I had so much scarring from radiation that my mobility actually improved since my surgeon removed significant cording from my armpit.
The one part I did not anticipate as fully was how uncomfortable the tissue expanders would be. The tissue expanders go in during the first surgery and are little bags that get injected with saline little by little to stretch out the skin. Once I got above a B cup (about 300 ml on my body), I was quite uncomfortable. My final fill went up to 400 ml, so that was over a month of living with that discomfort.
How has it impacted you physically, as far as strength, exercise and flexibility go?
I am athletic and sensitive to my body, but I have not noticed any difficulties with the lat flaps. I did a lot of weight training before the surgery. Whether this just helped me psychologically or provided actual support, I do not know. But once I healed from that, I was able to resume my training with my regular weights. This surprised me because I was prepared for an adjustment period. As I said, my range of motion actually improved because of the improvements with the scarring.
How about the psychology of it?
For me, this has been the best part. Not having to strategize my neckline with every outfit. Feeling like I can have some lovely amnesia about everything I went through with the treatment. I know fully that these are not fully functional breasts –– they do not have the sensation of real breasts –– I feel more like myself with them.
I knit this sweater for myself to wear after surgery. I call it “Welcome back, girls.”
If a person is going to do this surgery, what can she realistically expect for recovery time?
“This surgery” is really three surgeries. Luckily they get progressively easier. The first surgery is the lat flap and tissue expander placement. It is the toughest, with 2-3 weeks of really being out, and another 3 weeks of limited activity. The follow-up fills also require appointments and continual adjustments.
The second surgery involved switching out the tissue expanders for the implants. The whole thing took less than an hour. There were no drains involved, and I was off of pain medication within a week’s time. My physical activity is restricted for four weeks.
I will report on the final surgery (nipple reconstruction) once it’s over. But the surgeon assures me that this will be the easiest procedure of the three.
What’s one thing the doctor didn’t tell you that a woman facing the surgery should know?
My doctor was pretty frank with me, but I think I still underestimated the discomfort of the expanders. By the time my second surgery was on the horizon, I felt 9 months pregnant. I was ready to get those puppies out of me.
UPDATE: My friend Sarah found an actual decision chart in the back of a book by a surgeon in the UK. There is another procedure that uses tissue from the buttocks to make a new breast!
Tags: appearance, body issues, boobs, choices, reconstruction, social media, straight talk, survivorship, vanity
Posted in Survivorship | 20 Comments »
