I can’t tell you how many times I’ve seen posts or tweets about breastfeeding over the past year that were not just touting the proven benefits of breast feeding, but taking a pointed, judgy stance on the issue. Statements about breastfeeding related facts might be buried in the article, but the hooks? the one-liners? they’re just polarizing rhetoric. They don’t come right out and state that you are a bad mom if you don’t breastfeed, but the wording draws the reader right to that conclusion. Some of the posts and tweets try to get funny with the issue, but they come across with the same message. They probably don’t even have a clue how their message is coming across.
There was another one today; this is an old one that makes it’s rounds every 4 months or so… “True Story: I don’t have to worry about toxins in breastmilk. And there’s never been a recall on my boobs”
My boobs were recalled while I was breastfeeding. And you can bet I lost a lot of sleep over how many cancer cells my baby ingested from breastfeeding before I knew I had cancer.
Dairy Free Fake Boob
Don’t get me wrong. I am completely in favor of breastfeeding. I believe it is the best source of nutrition and immunity support available to a baby. But there are as many valid reasons for not breastfeeding as there are in favor.
There’s no way I could list them all here – there are too many stories out there, and no way I can know them all. Breast cancer stopped me. How about adoptive mothers? Sometimes the breasts just don’t work correctly, they’re not able to produce. Have you ever wondered why the role of wet-nurse was recognized in cultures all throughout history? The world is full of incorrect ideas about AIDS and how it is spread. We stupidly avoid handshakes and hugs, while we overlook the fact that breastmilk is a proven means of spreading HIV. What would you do if you were a breast feeding mother, and found out you might have been exposed to blood borne pathogens at work? Would you stop breast feeding? It has happened.
Breastfeeding in public? I did it for 11 months. Not one incident. I did make sure that I wasn’t flashing around body parts that I wouldn’t flash around if there wasn’t a baby attached. No one was cruel to me about breast feeding in public. I’ve heard it happens, and that’s really too bad. Any awkwardness I experienced was on my own part, trying to figure out how to get the baby attached with limited visibility, etc… It wasn’t about anyone else. No, the comments came after I was no longer able to breastfeed.
If you’re a new mom, you do what’s right for you and your baby. That’s your business, nobody else’s. If breastfeeding is right for you and your baby – do it! If it’s not, don’t.
Getting used to all of the people (even strangers) who suddenly thought my body and my baby were their business was the biggest adjustment for me through pregnancy, and motherhood. Just draw a bubble around yourself, and imagine all the comments and criticisms just bouncing off that bubble. You see, no one is really an expert. Parenting is on the job training, and the skills required are different for each child. That lady who just came over and said she raised 13 kids? She’s not an expert, either. Not an expert on your baby, anyway.
Love your baby. Wake up every morning, and try again. Everything is going to be ok.
I like to think of myself as having superpowers. My favorite superpower is the ability to make things go away by not believing they are true. I’ve had a lot of practice using this superpower; I was diagnosed with stage 3 breast cancer while I was still breastfeeding my baby.
That was practice using this superpower, but no success.
One of the first things that hits you over the head with a cancer diagnosis, after confronting your mortality, is the understanding that you are not in control. Control is an illusion. This is a very difficult concept around which to wrap your brain.
We’re constantly bombarded with messages about how we are in control. Make a plan and execute it. Just do it. We are the product of our own choices. Metaphors abound: in the drivers seat, steer the ship, drive to success, master of your domain (giggle, snort – if you got this Seinfeld reference, you’re old like me).
There is a lot of truth in these ideas. We are the product of our own choices – to an extent. But there is so much we can not control. The child with neuroblastoma did nothing to deserve that disease. They did not earn it. Neither did I.
For all this time we spend juggling – super-moms with all their balls in the air at the same time – we also live with this fear that one dropped ball will bring them all down. If we miss a ball, a deadline, a dental appointment, 50,000-mile maintenance check, the world will keep on spinning whether we pick up the peices and run to rejoin the party, or throw our hands up in the air in defeat.
Some of the balls are going to drop.
I worried so much after my diagnosis: How am I going to effectively parent my child, keep up the house, finish my degree, and battle this disease? I realized that I could not keep all those balls in the air. I made a choice. I decided that parenting and health were my priorities, housekeeping would get attention as I had any to spare, and I took a leave of absence from school. A year later my daughter is happy and healthy as she enters her twos, I’m nearly done with treatment though still battling fatigue, my hair is starting to grow back, and in January I returned to school full time. But, my house is still a mess.
I’m still making choices about my priorities. My house still isn’t winning.
Martha Stewart has a large staff of well paid employees that help her pull off all that magic. I don’t have to be Martha Stewart, and most of us have no hope of having a large, well paid staff to make us look good. What you see is what you get. It’s just me, Baby. Lovable. Imperfect. Flawed. With mutant genes running amok.
I am letting go of the illusion of control
I don’t want to give you the impression that I’ve got this fatalist attitude where there’s not much sense in trying because there is no hope of success. I don’t believe that at all. I try. I work my butt off. I pour blood, sweat, and tears into motherhood, and everything else I do. But I’m learning to distinguish between the things I can control, and the things I can’t.
I can control whether I provide a quiet time and space for my daughter to take a nap
I can not control whether she goes to sleep
I can control the amount and quality of the food that I eat, and I can control the amount and quality of my exercize.
I can not control my weight
I can control my own reactions to my toddler’s behavior, and I can control whether she has been fed, and provided ample opportunity to play and rest.
I can not control whether she has a meltdown in public
I can provide sufficient towels and a bath mat
I can not control whether my husband soaks the bathroom floor when he gets out of the shower
I can fight like hell, do everything prescribed, and more
I can not control whether this cancer comes back
Life got so much easier when I stopped trying to unbelieve what I didn’t want to be true. I can’t control whether or not I have cancer, I can only control my reaction to that fact. A huge burden lifted when I stopped trying to control things over which I had no control. I can’t control everything. I don’t need to control everything. The fact that I don’t control everything doesn’t make me less of a person, less of a woman, less of a mother. It makes me human. It makes me vulnerable. It makes me brave and scared at the same time. It makes me real. And it makes me more empathetic to everyone else around me.
Sometimes, the best things in life are unplanned. Usually, the worst things in life are unplanned. Either way, survival, thriving, requires the ability to adapt. In order to incorporate this new reality into my life, I’ve got to accept it. The more time I spend thinking it just can’t be true, trying to control the uncontrollable, the longer it takes to find a way to make the best of the situation.
I used to work for a cruise/tour company that was smaller, and a bit more intimate than most. This gave us the flexibility to chase rabbit trails, and make impromptu itinerary changes to take advantage of opportunities as mother nature provided. The director used to say “we have an itinerary so we have something from which to deviate.” That’s a little closer to the way I live my life these days. I make plans and set goals, I work towards them, but I try to stay flexible enough to change as necessary. That helps with crisis management; it also makes it possible to savor rainbows, and jump on opportunities as they arise as well.
This week, the girls at SITS are discussing perfection and the art of letting go. Join the conversation (Linky included). We’re also using #SITSLettingGo on Twitter.
Yesterday I spent the day manning the door at a wine-tasting representing 16 different local wineries. Every year, this event chooses a different charity to which the proceeds are donated. This year, the beneficiary was the Seattle affiliate of the Young Survival Coalition, which supports pre-menopausal women with breast cancer.
Most people, as they came through the door, were thrilled to learn that the proceeds of the event would benefit @YSCSeattle. One woman, however, was not. She took exception to the fact that this charity focused on the needs of young women. “It’s all the same!” she insisted. I started to launch into the standard spiel, when she fixed a look on me that clearly said she would not hear more on the issue, and any further discussion was unwelcome. I let her pass with a smile, and turned my attention back to the door.
Since she wouldn’t hear me then, ya’ll get to hear me now. I’m here to tell you, it’s Not the Same. (Just let me be clear here: these opinions are my own, I am not speaking as an agent of YSC Seattle.)
It’s not the same
Cancer affects everyone differently, and it’s a devastating diagnosis regardless of age. I don’t know exactly why this woman took exception to the age focus of the Young Survival Coalition. I would have asked her, had I been able to engage in conversation; short of that, I can only guess. Perhaps she felt it was an issue of ageism, that young women are perceived as more valuable than older women. I can imagine her frustration if that is the case. But understanding how a young woman’s breast cancer is different from an elderly woman’s cancer reveals issues that are much more complex. An elderly woman’s life is just as valuable as a young woman’s life, but the issues they encounter as a result of their cancer are quite different.
We go through a number of different stages through the life cycle, and cancer affects people in each different stage of life differently as well. A three-year-old diagnosed with breast cancer may relate better to other toddlers with cancer than a group of 30-year-olds or a bunch of 80-year-olds. Regardless of where we are in the life cycle, we tend to relate better to peers within our own age group who have similar experiences and challenges.
The truth is that the vast majority of the services provided for women with breast cancer focus on elderly women. Aside from those sponsored by the Young Survival Coalition, I was the youngest by a good 20 to 30 years at most of the cancer related activities in which I have participated. Young women with cancer have different needs, socially and medically.
Lets talk about that for a minute
Young women with breast cancer tend to have much more aggressive cancers that are diagnosed at a much later stage, meaning it’s more frequently deadly.
Most studies exclude women under 40, meaning those with the more aggressive cancers are not included in much of the breast cancer research.
Well, that’s a little frustrating.
There are other issues as well. What happens if you are diagnosed with cancer at the height of your career? When women still have to work twice as hard to even approach equal pay with men, adding a cancer diagnosis significantly impacts your ability to make a living. And with health insurance tied to your job, that further complicates things. Sure, there’s FMLA that is supposed to protect your job, but that’s only if you work for a big company. And COBRA extends your coverage if you can manage paying 103% of the full cost, on top of your co-pay and the 20% the insurance doesn’t cover. These rules are there to protect employees, but it doesn’t always work. There are ways around them, and corporations can afford lawyers, employees can’t.
Then there is the whole issue of saving for retirement. We had to empty out our retirement accounts at 40 years old to get through my year of cancer. That means we’re starting over from scratch, zero retirement saved up at this moment. We’ve already accepted the fact that retirement is just not going to be an option, we’ll just work till we fall over.
Now, imagine the single mom trying to balance a career, raising her children, and cancer in light of all that.
It’s not the same
And it helps to be able to discuss these issues with others who have gone through it as well.
Then there is the sex issue. I’m not so naive as to assume that elderly women don’t have sex. Considering that I hope to live long enough to be an elderly woman, I’d like to believe there is plenty of good sex involved. I’d also like to think that in my 80s my husband and I will be celebrating our 50th wedding anniversary. I could be way off here, but I imagine that the impact of a mastectomy on a 50 year old marriage might be a little different than for a woman who just got married, or is planning a wedding, or still looking for the love of her life. I understand that is a huge assumption on my part, but I think it’s one worth considering.
Now let’s talk about fertility. I don’t know how 80 year old women feel about their fertility, or lack thereof, but 20- or 30-somethings with a rapidly-ticking biological clock tend to think about it quite a bit. To have it suddenly and abruptly threatened or destroyed adds another layer of stress to the young woman facing a breast cancer diagnosis. Once you’ve survived cancer, your dreams have to be rewritten. Adoption? Sure, for those who are willing to adopt out to a cancer survivor. But don’t forget that cancer has already depleted finances, so the exorbitant fees charged for adoption are even more difficult to overcome. Surrogacy? Also an option, provided you are financially able to preserve the eggs before treatment and pay for the fertility services and the surrogate after treatment.
Most women diagnosed with cancer at an older age have adult children. That is a completely different situation from a woman who is diagnosed with breast cancer while she is still breast feeding her baby, or worse, while she is still pregnant. Imagine having to decide whether to proceed with chemo during pregnancy, or postpone it until the baby is born.
My breast cancer negatively impacted my daughter’s health. We had to emergency wean her for the mastectomy, and she lost two pounds; that’s a huge loss for an infant. It was several months before she was really thriving again. After the mastectomy, I couldn’t pick her up either, compounding my feelings of guilt while my baby was failing to thrive. What got me through this difficult time with my sanity intact? Being able to connect with other young women who had been through what I was going through. Being able to see that it is possible to raise bright and vibrant children while going through this dark experience made all the difference for me.
A room full of elderly women with breast cancer would never have been able to help me get through this in the way that the young survivors did.
It’s Not the Same.
And I’ll bet an 80 year old woman would not be very comfortable sitting in our support group either. She might have trouble finding someone with whom she could relate as well. The Young Survival Coalition doesn’t focus on age out of disrespect for elderly women, in fact reaching old age is one of our goals. We focus on age because young women are an underserved demographic of breast cancer survivors, and this is a way to get them some sorely needed support.
My favorite chemo buddy, Gem, accompanied me to my Herceptin infusion on Friday.
We also brought along a horse (of course), and some coloring materials.
I made several attempts at taking a picture of us together where I didn’t look stoned or have my eyes closed
but this picture just cracks me up – what WAS she looking at? And my chins could be used for counting lessons.
We piled string cheese, cookies, apple juice and magazines together and had a picnic right there on the bed. If you have to get chemo, and hopefully you don’t, a picnic in the middle of the bed is not a bad way to spend the time. (Also, don’t try to take your kid to chemo till you’ve had several rounds of chemo and know what you’re getting in to and how much your child can handle. SCCA, where I get my treatment, provides individual rooms for patients rather than bunching them all into on big room.)
About the Herceptin: If you are confused because several months ago I triumphantly proclaimed that I was done with chemotherapy, that’s understandable. Technically I am done with chemo. Herceptin is actually a biological agent, and (thank goodness) doesn’t have the debilitating side effects of regular chemotherapy. But I still call it chemo, because it’s easier than describing the difference. It’s administered the same way and by the same people as the chemo treatments..
The type of cancer that I have is HER2+, which is an extremely aggressive cancer with a high rate of recurrence. The one good thing about HER2+ cancer is the development of the drug Herceptin, which is able to specifically target the HER2+ flagged cancer cells, meaning there’s no wholesale assault on the body. Herceptin does not leave me nauseous, or fatigued, or cause pain like the other forms of chemo.
The big downside to Herceptin is that it is hard on the heart, so hard that I have to have a MUGA scan every 3 months to measure my heart functions. I just recently re-started the Herceptin after having to take a break because of reduced heart functions. The work of the medical oncologist seems to me as much art as science – a delicate balance combined with trial and error. It’s really amazing what they do.
The first night I met him, he glared at me then leaned back a ways before slamming his head down on to the table. That thud of skull connecting with wood was so hard it made the walls shake and the windows rattle. I choked a bit on my heart, and my stomach churned with that nauseous fear that comes when everything is wrong. Very, very wrong. What were we doing with this kid in our home?
To say I wasn’t thrilled about my mom’s decision to take in foster kids was an understatement. That she was specifically interested in taking developmentally challenged kids, made it worse. This was a bad idea. I was sure of it.
Matt’s case manager told mom that he was a “head banger.” Those two little words were inadequate to describe the frequency and force with which his head made contact with any nearby hard surface.
He was difficult to look at. His brain had not developed properly, and he was born with cerebral palsy and hydrocephalus. His hair grew in funny little tufts around the patchwork of scars on his head. His face was scarred, and frequently bloody from the head banging. He couldn’t stand up straight, and could barely walk.
And he was angry. Mad. Furious at the world. And with good cause.
It was Matt’s story specifically that finalized my Mom’s decision to become a foster parent. At the time she first heard about him, he had been living in a motel with hired care givers taking shifts sitting with him in that room, because they could not find a home that would take him. He had extensive medical needs, that required a great deal of work to manage. And developmentally he was a two year old, still a baby.
He didn’t know what was going on; he just knew that most people were mean, and he didn’t know who to trust.
It was a long period of adjustment: him getting used to our large boisterous family, and us getting used to this new person in our midst with so many new needs (like needing help with toileting, among other things), and of course, that head banging.
But one day we discovered something. If you put your hand on the table, or wall, or whatever else was the target of his swiftly moving head, he would stop mid-swing. He would bang his head, he would hit things, he would break things, but he would not hit us.
That discovery started a little shift. For one thing, it helped us significantly cut down on the head banging by just putting a hand in the way. But it also started to change the way we saw him: self-destructive, yes, but not violent towards others.
He got easier to look at over time as well. Eventually, we started to see past all the scars, and notice other things, like that mischievous twinkle in his eye.
Matt was a little prankster, especially once he got comfortable with us. He was funny. He’d blame his farts on you. He’d pull your chair out as you were trying to sit down. If he was done with you, he’d dismiss you: “Bye!”
And he was gentle, so very gentle, especially with babies.
The obvious lesson here is about not judging the book by the cover, or the person by how they look. But there’s more. It wasn’t just the way Matt looked that was scary at first. It was his behavior that terrified us. Matt also taught us a lesson in looking past the angry in others – that the attitude is likely a hard-earned, self-protective shell, and not necessarily indicative of what’s inside. Its a difficult lesson, and one I forget frequently. But I’m still trying.
Over the years, Matt went through dozens of procedures and surgeries. His hydrocephalus was managed by a shunt that drained the excess fluid from his brain. That shunt frequently had issues, perhaps caused by the head-banging, but that pressure may have also been the cause of the the head banging – the pressure caused a great deal of pain, that bang momentarily equalizing the pressure.
He actually became quite popular, at school, at church, in the community. He passed away from complications of surgery when he was 24. He was still a toddler developmentally, but he was a happy toddler. When he died he was surrounded by his family, foster family perhaps, but family still. And he knew he was loved. His funeral was standing room only; the community had learned to love him as well.
It has been 11 years since his death, today would have been his 35th birthday. I still think of him often. He taught us so much about accepting others, and about resilience and redemption. I’m still learning that lesson about forgiving and understanding the angry.