This was a blog about my adventures with Joe. Then, along came Nia. Four years later, along came Stage 3 breast cancer. Fast forward two years, and I'm now caring for my dad while he fights his own cancer battle.
I've been thinking a lot about the Princess and the Pea fairytale.
And vampires.
Together, in that order.
I'll explain: For the past four weeks now, I've been experiencing a tenderness in my left rib cage, about an inch below my mastectomy scar. For most people, without a history of cancer, this would mean nothing. For me, its got my full attention. When things like this crop up (because bodies do develop random aches and pains), I tend to take a wait and see approach. Wait and see if it 1) goes away, 2) comes and goes, 3) lingers and worsens.
Unfortunately my little spot is in the former category. I've since had it palpated, x-ray-ed, and sonogram-ed. Doctors cannot see or feel anything. And yet, I can. My fingers are drawn to the spot. I feel it when I'm washing my hair, or trying to fall asleep, or just cooking dinner. It isn't crippling, but it is nagging.
No one else can feel it, but I can. Hence, my mind is filled with images like this:
Maybe I'm simply a Real Princess, and teeny, tiny abnormalities cause little ole me discomfort.
Or...
Yes, "or."
Or there is really something there, cells gone rogue. Again. Which leads me to the vampire thoughts. Specifically: the amazing, fabled healing properties of vampire blood, and the "eternal life" characteristics of vampires...If only I could trade in this body. Stop the clock...
I get it now, this cultural obsession with vampires. I mistakenly thought it was sex appeal. Now I realize we don't want to sleep with vampires. We all simply want to be vampires: young and healthy forever.
Because the alternative is much too hard to imagine. Much too scary.
It's funny: Vampires are the stuff of Halloween stories, and yet, it is the natural course of life that is what really scares us all. Our bodies weakening, sickness taking hold, life passing us by....
It is this true life horror story that is keeping me up at nights.
My pea-sized pain... This afternoon my chest will be scrutinized via CT scan utilizing contrast dye. And then, I'll wait all weekend long to hear whether whatever is hiding there has be exposed...
Or not. Maybe nothing is there at all.
But what I do know, like vampires, once cancer has been inside your house -- it can come in any ole time it wants. And all you can do at that point is stake the mofo.
Author's note: I originally posted this last October, in the
midst of "My Cancer Year." I was two months post-FEC chemo (which I call
"the big chemo" because I continued to do Herceptin for six more
months, but it was the FEC that knocked me on my butt). I was also a
month our from a modified radical mastectomy with radiation on the
horizon. I had some strong feelings about "Pinktober." And it turns out I
still feel the same way. So, as October kicks off, I ask you to please
"think before you pink." Best, April
Can we talk for a second about this whole "pinking" of October and Breast Cancer "Awareness" Month?
This might upset you, gentle reader, but I have to get something off my chest (pun intended!):
I don't buy it. Literally.
I don't buy that making everything pink has made anything better for
breast cancer survivors -- or our mothers, grandmothers, sisters,
daughters, and friends who've lost their battles to this horrific
disease.
Does awareness really do anything for anyone? Particularly the selling of awareness?
Do pink ribbons literally everywhere save lives?
Has the pinking of the NFL improved breast cancer outcomes?
Breast cancer isn't an all girls sleep over party with pillow fights and cute pajamas.
The truth is -- the unsexy truth is: Breast cancer can kill. And some women loose their breasts to save their lives.
I think all that pink has anesthetized the public to what breast cancer is really all about.
Breast cancer is scary, painful, depressing, make-you-so-mad-you-see-red.
Breast cancer is my daughter suddenly crying into my one remaining
breast that she loves me and doesn't want me to die. Breast cancer is me
gripping my husband's hand in the middle of the night, scared that I
might not be here for all our wedding anniversaries. Breast cancer is my
grandmother dying in a hospital bed, so high on morphine she didn't
recognize us anymore.
Breast cancer is all the women in the Chemo Lounge, juggling their
lives with their treatments. Some of them -- too many of them -- will be
doing treatments for the rest of their lives.
And what about other cancers? Why is October all about Breast Cancer?
Why not raise awareness for the fighting of all cancers, especially
children's cancers?
And what about the men diagnosed with breast cancer? I'm sure they love the pink ribbons.
I can't believe a month has passed since I last wrote here.
I didn't mean for so much time to pass. In case anyone was worried -- don't be. I'm fine.
In fact, part of the reason I haven't been round here much lately is because I'm doing so well!
First and foremost, I passed a significant milestone: Aug. 8 marked one year since I finished the Taxol & FEC chemo treatments. When I had the mastectomy 6 weeks later, there was no evidence of cancer found. A 7cm lump vanished! And so I count that last big chemo treatment has my no-more-cancerversary. (Note, I did continue the Herceptin for 8 more months after that -- and I'm only now realizing that those 8 months were nothing to sneeze at!)
As many of you know, I worked the whole time I was in cancer treatment (to varying degrees) at my work-from-home job as a conference producer. It is only now that I am feeling better that I am able to see how diminished I truly was!
I plan to go more into my thoughts re working during treatments but now that I'm feeling good -- primarily, like I have control of my brain again! -- there has been a lot of catching up to do! Last week I traveled to my first post-cancer conference -- man, was it good to be back! This was my first time traveling without my little entourage, too: Joe & Nia stayed behind. It was wonderful to be there fully immersed in my work (and not torn by parenting concerns or distracted by feeling sick). It felt so... normal.
Another reason I have been away from the blog is that I've been busy tackling some of the lingering effects of the chemo, namely the chemo-induced hopefully temporary menopause. I plan to write about this soon, but it is extremely personal and while I haven't shyed away from personal topics (remember this?), I'm finding this one to be hard to write about. But I have been sitting down with pen and paper and working it out. After all, it is via writing that I do much of my processing...
And finally, we've been busy enjoying the last days of summer before school begins. Nia heads off to Kindergarten on the 4th of September... and she is very excited (phew!). More to come on this as we embark on a new chapter in our lives.
All in all, life is really full and busy and wonderful! I'll be back soon with a full-fledged post. Thank you all for your inquires and support. As always I am so thankful!
We had a wager going that the whole procedure would be done in 30 minutes.
As I lay on the gurney, my head propped to the left, a surgical-field paper falling across my right cheek, I had a perfect view of the minutes clicking by on the clock.
I wasn't going to win the bet.
We were there to get my chemo port removed -- that little bump under my skin below my clavicle that had been my constant companion for 15 months -- a spot I rubbed absentmindedly when I was thinking or nervous.
It wasn't Surgery with a capital S -- I wasn't in the OR -- but it was a little more serious than they'd initially led us to believe. When they said we'd be "in the surgeon's office," what they really meant was a "Procedure Room" in the office (and the office is in the hospital). I was in a gown, he was in scrubs and a mask. There were knives and serious-looking surgery lamps. There was a nurse. There was an iPod for setting the tone and keeping the surgeon relaxed and focused.
There was no anesthesiologist, but there was a lot of local anesthetic ("little bee sting here").
But Joe was there, too, this time. There was light conversation and some laughter. No one was looking at me with pity, knowing the year that was in store for me: the chemo, the radiation, the mastectomy... The waking-up-in-the-middle-of-the-night-soaked-with-sweat-scared-to-death.
With each stitch the surgeon laid down, I was writing the final pages of that chapter in my life right there on the gurney.
When I had it installed last year, the chemo port, in a lot of ways, kicked off my year, maybe even more so than the diagnosis or meeting my oncology team. That installation meant I was in for A LOT of chemo, and it was also my first-ever surgery. My first time really feeling like a patient. Now, as Dr. R move the scalpel over my chest, I thought, "This is the third time he is cutting me open and sewing me shut since we met."
As I lay there, feeling him tug and pull at my chest ("you'll feel a little pressure"), trying to coax the port away from the scar tissue that had formed around it, I thought about how weird this whole thing was: "new normal" people like to call it. In some ways I think it is more like life after death... or like what waking up from a coma might be like: Life and time have moved on for everyone else but the person waking up is straddling the present and the "before" with a dark cavern of time in between.
My memories of the Cancer Year are fuzzy (thankfully, I wrote it all down!). I remember things right before my diagnosis much better -- almost as if they just happened.
In February of 2012, I went to my last conference before I was diagnosed. After the conference concluded, I sat outside the hotel restaurant by the pool and had a glass of wine with two colleagues. A few weeks later, one of those colleagues moved on to another job. I'll probably never see or talk to him again. Eighteen months have passed and considering that was the only time we met, he may hardly even remember me. But I remember that drink by the pool so vividly, like it was just last month. And not because it was a particularly memorable glass of wine or conversation, more because it was one of the last things I did before.
Now that I'm NED-ing, the whiff of cancer still hangs around, still raises its hand and begs to be part of the decision-making. Like the nights we do our finances: on the one hand, we spent all our money fighting cancer so we really don't have much to spend on things like vacations. On the other hand, if this stupid cancer comes back, I know I will wish I'd gone on more vacations. Live like you're going to die tomorrow... and also responsibly, like you're going to live to 100.
Sure. That's easy.
But all we can do is L I V E. Right? I really do embrace every day. I lived through that terrible cancer year.
It is summer again.
I am here.
I don't want to get to the end of my life and find that I lived just the length of it. I want to have lived the width of it as well. ~Diane Ackerman
I never thought I'd be writing about Angelina Jolie on my blog.
Beyond us both being mothers, there are few people I have less in common with than the actress. But after her announcement this week that she had a proactive double mastectomy to avoid the breast cancer that killed her own mother at the age of 56, well, here we are courtesy of cancer, the great unifier.
Jolie wrote about her decision and the radical mastectomy-followed-by-reconstruction procedure in an OpEd piece for the NY Times. After it went viral, Facebook and Twitter were full of people discussing her & her decision -- people with a cancer connection, as well as the general public. I even turned on NPR at lunchtime yesterday and heard Tom Ashbrook discussing it with callers (again, some with a cancer connection, and some without).
Some people were shocked she'd undergo such a radical procedure. Others applauded her for not only taking the step, but also sharing her decision publicly. Still others thought her move highlighted the divide between those with money and those without.
A few people asked my opinion, so I thought I'd take a few minutes to react.
First and foremost, if your family has no history of breast or ovarian cancer, you don't need to consider this surgery anymore than you'd consider removing any other body part. Jolie writes that her decision to remove her breasts was motivated by testing positive for the BRCA1 gene. When I was diagnosed with breast cancer at 35, this was one of the first tests my oncologist ordered. It would be nice to have a smoking gun, to say, "There! That's why I have cancer so young!"
But for me, the test (a simple saliva swish test) came back negative. It doesn't mean that I don't have a gene mutation somewhere in there that caused me to have cancer. After all, we all have cancer cells in our bodies, we just won't all develop cancer. I suspect that probably some day down the road, a test will be developed and the gene mutation I do have will be discovered.
And then my daughter may find herself facing the same decision Jolie faced this year: Would removing her breasts give her a better chance of survival?
Would I recommend she do it?
Deciding to remove a body part is drastic, and not to be taken lightly. Jolie writes that removing her breasts reduced her chances of getting breast cancer from 87% to 5%. It doesn't mean she is no longer at risk for another type of cancer, but at least she can cross this one off her list.
I suspect that her mother's fight with cancer and her subsequent death has haunted her. I bet that every day she looked into her childrens' eyes and felt the shadow behind her, wondering if she'd be alive to see her children grow up, to see her grandchildren. If that was the case, then removing her breasts has given her back an immeasurable quality of life. And you have to weigh that in this decision. Everything with cancer is balanced against quality of life, not just quantity. Tests, treatments, procedures -- and even the decision not to act -- it comes down to, what can I live with, day in and day out?
For comparison, your chance of dying in a car accident today is 47% higher if you are not wearing a seat belt. I'm betting it is a no-brainer for you to buckle up. But buckling a seat belt doesn't cost us anything. A mastectomy, particularly with no personal cancer present, is a hard decision and involves body image issues, sexual function (remove the breasts, and you remove a large erogenous zone), childbearing concerns (done breastfeeding forever?), the risk of the surgery itself, the added risk of complications with the implants (though not all women who undergo this surgery will opt for reconstruction).
And there is the cost to consider, however I think this is one of the most misunderstood pieces of the Jolie story -- insurance will cover the cost of the BRCA test if you have a higher chance of having the gene (breast cancer history in your family, for example). And insurance will help with the cost of a mastectomy due to BRCA results and/or cancer. Insurance will even help with reconstruction.
In the end, it is a very personal decision.
I considered it myself. I considered removing my healthy breast at the time of my single mastectomy. But for me, the time was not right: I still hope to need that breast to feed another child. However, once that possibility or opportunity passes, I will be back to considering it. If removing it would mean I don't feel like I have a ticking time bomb strapped to my chest, then I'll do it.
And if Nia faces this choice one day, and asks my opinion, I will tell her this:
It is a deeply personal decision. You have to weigh both sides -- how you will feel with your breasts, and how you feel without them. If removing them, no matter how important they are to you, makes you feel safer, do it. Maybe it is something you do at twenty because you are more terrified of breast cancer than you are of not being able to breastfeed. Maybe you have your own children, and remove them at forty. Either way, it is completely up to you. And if you choose to keep your breasts, that is your choice too. I would not judge you for either decision.
For more information about BRCA and more analysis of Jolie's decision, go here.
And for a beautiful photography project collecting images of women who've had mastectomies, visit the ScarProject.
Actually, it was just one fake boob. Foob I've dubbed it. (Or "shoob" seeing as how it is actually a second-hand boob, but more on that later.)
The fact that I only needed one contributed to my decision to go with a prosthetic; I opted not to have reconstructive surgery after my mastectomy last September.
The reactions I get to this are mixed.
Doctors understand for the most part, but the general public (and my daughter) are a little confused. Wouldn't I want to look normal again? Totally. And while they would have put spacers in immediately following removing the cancerous breast, I was skittish about all the follow up surgeries (at least two additional) and the risk of complications.
Also, a little known fact: If you only need reconstructive surgery on one breast, they still cut and shape the healthy breast in order to better match the fake one. Anther obvious-if-you-think-about-it but seldom mentioned fact: If your weight changes over the years following your surgery, the fake one stays its same perky self, while the other one changes, which can lead to lopsided-ness -- which I already have, thank you very much.
By the time I walked into the little store in Los Gatos with the foobs and the wigs, I'd been walking around with one breast for more than six months. I was surprised how little this asymmetry bothered me. Before the mastectomy, I'd imagined I'd want to have a prosthetic ready and waiting for immediate use. It turns out, though, that having something pressing on that area when it is healing and during radiation treatments is unpleasant. And so time went by and my incision healed, and so did my feelings of discomfort.
And honestly, I didn't really feel like people noticed the mismatch.
Two things led me to the prosthetic shop: 1. The same radiation treatments that delayed my getting the prosthetic -- radiation causes the skin to contract and want to pull the shoulder in toward my sternum. Putting pressure on that area via a prosthetic reverses the contraction. But more than that was reason number 2: My daughter.
A month or so ago she and I were walking to the park when she stopped to pick a dandelion. She blew the seeds and almost immediately went from happy to sad. After a bit of prying she told me that her wish would never come true. I pried a bit further and she finally blurted out that she always wishes for the cancer to go away. I quickly told her -- somewhat relieved that this was all that was bringing her down: "But honey, I don't have cancer anymore! It's all gone!" Phew! Crisis adverted! But she was still sad. She mumbled, "But your boob hasn't grown back yet."
While I was comfortable being lopsided, there was an E-cup shaped hole punched in her universe.
So I made the long-awaited appointment at the foob shop. I got two special mastectomy bras -- they have little pockets in the cups for prosthetics (which range from silicone breast "equalizers" to light-weight foam breast "forms"). Some people need full prosthetics, some need fillers. Either way, the pocket keeps the thing from sliding out and plopping on the sidewalk.
In addition to the bras, I walked out with a two-pound silicon equalizer.
And equalize it did. I was really surprised how similar the fake one looked to the real one. So surprised, I just keep staring down at it all afternoon.
See?! You can't even till which one is fake can you?
And it wasn't as hot and heavy and awkward as you'd expect a two-pound blob of silicone stuffed in your bra to be.
But was Nia sold? We had friends with us in the bra shop and she seemed happy enough. Later at the park, she was over the whole foob thing and just ready to play. I tried to ask if she liked it but she didn't want to talk about it. It wasn't until we got home and I took it out of my bra to show Joe that she got really excited. She wanted to hold it and when she did, she literally lit up. For about an hour that night she walked around with it, cuddled it, slapped it (?!), played dress up with it (it looks like a little pregnant belly on her), laid it over one of her stuffed animals and declared it "pork." (Later when I was looking for it, she said it was cooking...??!)
The foob made her really, really happy. Now she wants to hold it all the time.("No, honey, you can't hold it now. Because I'm wearing it!")
I never in a million years expected that.
Nor did I expect to like it as much as I do. Like I said, I was pretty comfortable being lopsided. I had no idea what I'd gain by strapping that thing on. But the thing is, nature favors symmetry. It's obvious: My clothes look better with two matching boobs. But what was less obvious was how confident I'd feel wearing the foob. I feel... visible again. I thought that people didn't notice the asymmetry before, but maybe in our society that is so breast-centric, not having two matching breasts (and two big ones at that) made me not so much conspicuous as invisible. People were not only not noticing, but I'd swung to the opposite side of the dial into a-sexual.
I'm not planning to wear it every day, but it sure is nice to have the option. It is pretty funny getting out of the shower and seeing my stack of clothes now.
Suddenly I'm 13 again with brand new boobs -- only this time I'm emotionally prepared for it, and my friends aren't jealous. And if they are, they can come over and take the foob for a test drive. Like Nia.
It's been one year since I found that fateful lump.
One year of discovery, diagnosis, treatment, and recovery. Between finding the lump and being diagnosed, Joe, Nia & I took a trip to Tahoe to celebrate my 35th birthday. Tomorrow, we are heading to Tahoe again. A bookend to the cancer year, and a kick-off to my 36th year. Cheers!
~~~
The lump...
Getting the port for chemo installed; my first surgery...
The day before my first chemo treatment...
And now, growing my hair back; getting used to the new me; getting stronger every day...
For so long, I longed for everything to "just go back to normal."
I wanted my life back the way it was before the cancer. Things were going so well -- work was humming, parenting was clicking, Joe and I were thinking of adding to our family... And then the cancer diagnosis came and suddenly, in a flash, a year was taken from us. Some things froze in place, other things were set back. Some things may have been striped from the horizon forever.
My 1-year "cancerversary" is coming up in one month, and the light at the end of the tunnel is almost dazzling. Six weeks past my last radiation treatment, my brain is clearing. My skin has already peeled & is healed again. The mobility of my left arm is all but where it was prior to the mastectomy.
Everything is normal again. Sorta.
There is a post-cancer cliche I keep hearing: "New normal."
In some ways I welcome the new normal, and in some ways I want the old normal. The new normal includes an eyes-wide open feeling, a thankful-to-be-alive feeling, but also way too many on-going doctor appointments.
And compression garments. (I'll get to that in a sec.)
Things will get in a good rhythm with work, preschool, exercise & writing and then suddenly I have to spend a huge chunk of time at a doctor's office, surrounded by other patients who look... well, sick. Wheel-chair bound, bald, pale, tired... The club no one asks to join.
Last week I added in a new doctor: The occupational therapist in the Lymphedema Management Center.
It seems when it comes to lymphedema, cancer is the gift that keeps on giving. What is it? Swelling & pain caused by the removal of lymph nodes and complicated by radiation therapy. In my case, I had 13 nodes removed from my left arm pit during my mastectomy. That means 13 fewer nodes in the lymphatic system to manage the waste fluid in my body. As the OT nurse put it, "Thirteen garbage trucks were taken off duty in your waste management program."
Awesome.
That means there is a risk of painful fluid build-up now or tomorrow. Or, thirty years from now. It never goes away, and can crop up any time. (More on the lymphatic system here.)
So I'm in the clinic to find out how to avoid it, and how to manage the light swelling I'm experiencing now. The short answer is that I must wear a compression sleeve when I exercise or travel to high altitudes. I must wear a compression insert in my bra as well. I should take up swimming (think: full-body compression). And I'll never wear my wedding ring on my left hand again.
Don't mistake me: I'm grateful lymphedema isn't simply a given & that I can learn tricks to combat it/manage it. It is just one more way that my life is forever changed.
New normal.
~~~
Check out this cool interview I did back in December with Parenting With Cancer!
As a student, I always loved new school supplies, particularily brand new binders and notebooks. All those blank, fresh pages. Some people might have found them daunting. I, on the other hand, took them as both a challenge and an opportunity.
January is sort of the same thing. A new year, all stretched out before us.
In turning over a fresh leaf I've decided to harken back to my school days and open a fresh notebook -- or in 2013 speak, to launch a new blog. I'll continue to post here about all my adventures with Nia and my thoughts on parenting with (or without) cancer. But I am embracing a new anticancer life now, and so will use the new blog, Green Tea & Chocolate, to chronicle my journey in health: mind, body, enviroment.
I'm excited to share recipes and my ups and downs in charting this new-to-me territory.
I hope you'll follow me over there as well as here.
This morning was fairly typical: In the still-dark of the night, my daughter snuggled into bed between my husband and I, and drifted off to warm, cozy, dreamy sleep. I knew she was dreaming because her feet started kicking, like a puppy dreaming of running and playing.
I snuggled next to her and closed my eyes.
Minutes ticked by.
Slowly it dawned on me that I was wide awake. I rolled over & stared at the ceiling.
The digital clock read 4:30a.
Is this normal?
I mean, is this the new normal? My new normal?
I keep waiting for things to "go back to normal." To go back to the way they were before all the cancer treatments. But when I voiced this urgent request, both my dad & my therapist made the same startling suggestion: Maybe now there is a "new normal."
So as I lay there in bed in the wee hours, my gaze drifted out the sliding glass door into the backyard. Although it was still very dark, the backyard was faintly lit from the Christmas Tree lights in the living room. As I watched, a faint silvery shape -- a little animal -- scurried along the top of the fence, disappeared (presumably to climb down the tree, not because of magic), and then reappeared on the ground.
I watched it rooting around on the ground. It was easier to see if I didn't look right at it, but looked slightly passed it.
Suddenly I knew what it was. A baby opossum.
Is this a sign, I wondered? The sign of the new year, both 2013 and my post-cancer year? It is a baby after all. But... it is also an opossum... *shudder!*
OK, Internet, what have you got for me? What is the symbolism of the opossum?
Opossum may be relaying to you that you are to expect the unexpected and be clever in achieving your victory. This could be a victory over a bothersome salesman or a noisy neighbor. In essence, opossum is beckoning you to use your brain, your sense of drama, and -- surprise! -- to leap over some barrier to your progress.
Whoa. The Internet did not disappoint!
The opossum symbolizes "diversion." When all else fails, the opossum plays dead. When the confused rival walks or looks away, the opossum runs to safety. If opossum shows up for you, you are being asked to use strategy in some present situation. Victory is sweet when the victory is one of mental as well as physical prowess. (Source.)
Huh.
OK.
Gonna have to think on that one.... but it sounds promising.
New Normal, here I come!
Thank you, baby opossum.
~~~
PS. Today is my last day of radiation treatments. Woot! While it has only been 6 weeks -- 28 treatments -- I'm so ready for them to be over. My skin is red and sore. Sleeping is difficult because the sheets or my shirt or whatever feels like it is rubbing my skin off. My arm-pit is scabbed. I have a little routine between the Calendula lotion and the Hydrocordizone. And now there is a new one. Silver sulfadiazine. That one I'm supposed to use when my arm pit begins to ooze (my least favorite word!).
I don't mean to sound complain-y.
One big reason I wanted to write about my cancer journey was so people facing this same struggle would know what to expect. So here is my reflection on radiation:
It isn't has hard as chemo.
It doesn't hurt as much as recovering from surgery.
But it does hurt. More than a sunburn.
Use the lotions & creams liberally.
Be kind to yourself. Radiation is no joke. You're still very much in the thick of it all.
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