The Lie Moms Tell Ourselves, and Its Dangerous Impact

Our 2014 family portrait, taken 3 days after my breast cancer diagnosis

I took a life-altering course on empowerment a number of years ago that shifted the way I look at and live my life. One of the biggest lessons that I took with me from that course into my daily life is how I view the common, recurring complaints that I have.  The main take-away and lesson around complaints was that for every complaint we have, we are getting something out of it that we want more, on some level, than getting rid of the complaint. There is always a cost, and always (always!) an impact.  And usually, what we're getting out of it is something nasty and not too obvious. So every time I have a big, whiny complaint, I look to see what I'm getting out of it.

The Complaint
There's this great, big fat complaint many of us moms (including myself) have.  This complaint is called "I don't have time."  And not only is this a common complaint, it's also a lie.  Not only do we tell ourselves this lie, but we consistently reinforce it, with lots and lots of evidence, not only for ourselves, but for each other. This lie is so entrenched in how women tend to view motherhood that I would venture that 99.999999999% of women who tell this lie actually believe it to be an immutable truth.  Maybe some of you even got offended that I called it a lie. Because it's really that real to us.  The way we live our lives, and the way our brains work, is this vicious circle that causes us to have a million things to do and not enough time to do them, so clearly things have to get cut. And what gets cut?  Most likely a lot, but the first things to go (besides the cleanliness of our homes) are usually the things we want and need to do for ourselves.

Don't get me wrong - most moms, especially single moms, have a whole lot of things we are responsible for every day.  I'm not saying we don't have responsibilities, and I'm not saying those responsibilities aren't ridiculously important to us and the ones we love.  We do, and they are.  However, as a group, we tend to become rather victim-y, and martyr-y about it.  I know I did (and sometimes still do).  As if we have no say in the matter.  As if we are at the whims of everyone and everything else in the world, powerless.

I'm here today to call bullshit on that.  Because that lie, or my interpretation of that lie, almost killed me. Literally. So, using the tools I got from my course, when I look back on my life, I wonder what, for me, is this allegedly wonderful, beneficial thing I was getting out of keeping this complaint alive.

The Payoff
It took a real look, and a devastating life event, for me to learn what the payoff was.  Remember, I said above that it's usually something nasty and not too obvious.  What I learned about myself was that the payoff to my "I don't have time" complaint is that it makes me feel like I am absolutely necessary, and that the world, at least the world of the people I love, would not work without me.  Take me out of the equation and everything would fall apart.

The Cost
If you think about it, this belief can be really damaging. If I believe that I'm necessary, I clearly am super important, which is something that just about every human being wants to feel.  However, it's a huge and heavy burden to feel that the worlds of the people you love won't work without you.  Thus the whole martyr/victim role I would so often fall into.  Because when you're that important, clearly your wants and needs will have to fall by the wayside.  We love our families too much to have it any other way.

The Impact (and the story and point of this post)
Almost a year ago, I felt a lump in my breast.  It hurt.  I went immediately to a breast surgeon my mom had used in the past to have it checked out.  He gave me a breast exam, and told me he was not too concerned, because it had none of the markers of cancer.  However, he wrote me a prescription for a mammogram and told me to make sure I got one.  No immediate rush, but I should get one within the next month.

Well, that next month was the first month back at work (I'm a teacher), my son's first month of kindergarten, my husband starting his graduate classes 3 nights a week in addition to working, and all of the other hullabaloo inherent with September.  I was B-U-S-Y.  And I wasn't any less busy in October. Especially not November, with my son's and husband's birthdays and planning Thanksgiving, and certainly not December!

In January, I had an OB-GYN issue that I couldn't put off, and made myself an appointment.  While I was there I asked my doctor to check the lump.  Although he also didn't recognize any markers of cancer, he was concerned because of the size - it seems it felt rather large.  He told me to make an appointment for a mammogram IMMEDIATELY.  And I did.

For those of you who have been reading my blog, you know what came next.  Within a week I was diagnosed with Stage 3 of a very aggressive and fast moving breast cancer, possibly in the process of metastisizing and spreading throughout my body.  I spent the next 5 months in bed from ridiculously large and powerful doses of chemo.  A little over a month ago my breasts were removed.  Last week I had a follow up surgery.  In a few weeks I start radiation.  I will continue on antibody injections until February. Next summer I will have reconstruction on my breasts, with a few minor surgeries following.

The above is the impact.  I don't know what would have been the result if I had gone 5 months earlier for a mammogram, but it's pretty darn likely my course of treatment would have been much easier than what it was (and yes, the outcome also could have been worse in some scenarios as well -  I get that too). And, one of the craziest things about it is, I could probably get all of the sympathy in the world, all of the understanding, especially from my fellow mothers, about all of the reasons why I didn't go for my mammo when I was originally told to.  I could also get that same sympathy and understanding for what I have experienced within the past 6 months.  That is not what I'm asking for, and it's not the point of this post.

The Point of this Post
These stories we have, these lies we tell ourselves about how the lives of the people we love will stop working without us, are not true.  And rather than being a crushing realization that I'm not the uber-important key to ensuring the lives of those I love run smoothly, it has been one of the most freeing realizations I've experienced. Rather, I've really gotten, in my heart and soul, that what's uber-important is me.  Just me.

Because really, when I was in bed for 6 months, things got handled.  The world turned.  My kids ate, got to school, did their homework, the laundry got done, the house got cleaned.  Maybe not to my standards, but they still got done. They even had fun and enjoyed their lives, making memories both with and without me. Oh, and I got taken care of. Yeah - that's not something I had ever counted on needing to happen.

Yes, we had incredible amounts of help.  My husband stepped up in ways I had never dreamed he was capable (oooh, how demeaning of me even to say!).  On my (many) bad days, my kids were able to go down to sleep without me singing and reading to them.  They actually understood when mommy wasn't able to do things for and with them, and they weren't angry or bratty or tantrummy (well, most of the time...). They're two and five. I guess my protective little world view of them needing me to survive and thrive was a little demeaning as well.

This is not to say that their lives are not vastly improved with me, now that I'm finally getting back to myself. There is nothing, NOTHING, that can take the place of a child's mother.  Ever.  That is the knowledge that kept me going to the torture of chemo, it's the knowledge that made me determined to live, to not even entertain the thought of dying, throughout this entire ordeal.  There is NO WAY my children will grow up without me, so long as I have breath in me to fight to live.

However, what they need is me present and with them.  Not just the things I do for them.  And yes, sometimes there is overlap.  But I no longer carry the weight of a bullshit story that the world will stop without me, that the contributions I make are the things I do rather than the person I am. This is the freedom I have now that sometimes moves me to tears.

It's a freedom to do for myself.  My husband can more than handle taking care of the kids. For an afternoon if I have a doctor appointment (or a massage appointment!). For a night if I choose to go out. For a weekend if I choose to go away with friends.  Even for a week or two if I were to choose to vacation without them.  Even for a lifetime if I were no longer present.  And even though I will never choose the last one, there is a freedom in knowing that.  I get to live my life powerfully because of that. Those who I love won't wither and die without me.  There is no ball and chain attaching me.  So when I stay, it's because I choose to, freely and without reservation.  No victim, no martyr.

What I hope you take away from this
I hope it goes without saying, but what I hope you take away from this is the following:

1. Check your breasts, follow up immediately if you find anything, and get regular mammograms and listen to your doctors (DUH!!!!)
2. Give up that you have to do things in order to be necessary, to be enough for those you love.  You are enough.  You are so enough that it's overwhelming how enough you are.
3. Check your breasts, follow up immediately if you find anything, and get regular mammograms and listen to your doctors
4. Make time for yourself, your life, your friends, your own personal development as a person.
5. Check your breasts, follow up immediately if you find anything, and get regular mammograms and listen to your doctors.

Oh, and if you know me personally, don't ever tell me you don't have time for something.  We make time for the things we need to, and want to.  :-)

XOXO

Joining the Itty Bitty Titty Committee - Owning My Mastectomy

Hello my friends.  It's been a long time since I posted.  It's been almost 6 weeks since my mastectomy and I have gone through a lot of spaces since then.  The bottom line is I'm all good.  For those of you who are squeamish about medical stuff, there is nothing too descriptive below, I promise.

The Mastectomy
On June 24, I had a modified radical bilateral mastectomy. This means they removed all breast tissue from both breasts. The right side, where I had the cancer, had all breast tissue, including the nipple, removed, as well as a complete lymph node dissection (all of the lymph nodes under my arm that my surgeon could find were removed). My left side, where there was no cancer, had all breast tissue removed prophylactically (to prevent me from ever getting breast cancer in that breast).  I was able to keep the nipple intact.  There were two parts to the surgery - the breast surgeon who removed the breast tissue, and the plastic surgeon who inserted the expanders and drains (more on the expanders below) and sewed me back up.  All told the surgery took about 4 hours, and I was in recovery for about 3 hours before they moved me to my room.

I was in the hospital for 3 days, where I was on morphine and then Percocet. My time in the hospital is a blur, a drugged haze. I do remember, however, that my pain was very well managed.  There was discomfort, but never blinding pain. Once I got home, the next week was also a drugged haze. Again, more discomfort than pain. Within two weeks I was up and about.  After four weeks I was feeling pretty normal.  The big thing was being very easily exhausted.  Even now, I get tired much more easily than I used to be before this whole cancer adventure, but I have more and more energy every day.

Last Friday I went in for a second procedure.  My plastic surgeon was not happy with how the incisions were healing, and she opened them up, irrigated the inside, replaced 25% of the graft on the left breast, closed it up and attached a vacuum tube with a battery pack on the dressing for each breast to speed up healing.  After a week the dressings were removed and the incisions were healed better than they had been in the first 5 weeks after surgery.  I still have the stitches in to ensure complete healing. My surgeon guesses that because the surgery was done only 12 days after my last chemo, my body's healing abilities were slowed down significantly.  I'm all good now!

The Pathology
According to my breast surgeon, everything is going according to plan (to which my brain screams "Plan?!?!?! None of this is going according to plan!!!). In other words, if there is any cancer in my body, they can't see it.  And if there is any cancer they can't see, between the radiation and the antibody injections I'm getting through February, those cells will DIE DIE DIE.

So what did they find in the tissue they removed?

In the breast tissue, there were isolated cancer cells, with clear margins.  In cancer speak, that means that there was plenty of healthy tissue around those cancer cells, so there is little to no risk that it spread to surrounding tissue, like my chest muscles.

As for the lymph nodes, my surgeon removed 16 nodes. Of those, 5 had microscopic cancer cells. My oncologist reassured me that means IF the surgeon missed any lymph nodes (and he was pretty sure he got them all), and IF any of those lymph nodes have cancer cells,  the radiation I will soon be starting will handle those.

My (Long Awaited, 24-hour) Breakdown
A week after surgery, I had an appointment with my breast surgeon who told me the pathology.  I started crying from joy when they told me.  And then I didn't stop crying.  The whole way home, through lunch (in a restaurant, no less!), and into the night.  The next day, I had an appointment with my oncologist for the antibody injections. I was still crying. When I saw him, he gave me a hug and I started sobbing in his arms. I told him it wasn't about the mastectomy - I was fine with that. It's just that, for the first time since this entire thing started, I was convinced I was going to die. I thought my doctors were lying to me, and that I was going to die (which, incidentally, besides being ridiculous and highly immoral, is also illegal.  They could lose their licenses to practice medicine if they did that.). He put me into a private room where I kept crying. A few nurses came in to speak with me and check up on me - we've all gotten to know each other over the months, and they knew how out of character this was for me.

During my injections, my chest started contracting and I started having trouble breathing. I thought I was having a reaction to the injections.  I had my husband (who was with me for the first time at the chemo/injection center) call the nurse, who came in and stopped the injection immediately and started checking my vitals, which were fine.  I asked the nurse if I could be having a panic attack.  She said she thought that's what it was.  She asked if I wanted to see the social worker and to see if she could get the psychiatrist in.  I said what the hell - I'm no dummy, and I knew I was having an emotional breakdown.  She asked if I wanted an anti-anxiety drug.  Hell yes!

Long story short, I had a real, bonafide panic attack.  I had never had one before.  It was pretty crazy.  The psychiatrist didn't feel a need to prescribe anything other than the as-needed anti-anxiety pills I had sitting in my purse. I haven't had one since. And I believe my doctors now.

I have to give my psyche credit. I really chose the right time to lose it.  It was after the hardest part of my treatment (all of chemo AND my mastectomy) was complete. It was after my medical results matched what I wanted to hear. It was while I was in a hospital environment where I was comfortable and where all medical resources were readily available. It was the one day my husband was with me (he'd always had work previously), the man who is my rock and the person on whom I lean and rely to keep me calm and related to reality. It's because of all of these things, I'm sure, that my breakdown freakout only lasted 24 hours. There was nothing, in reality, to keep it going any longer. There was and is nothing unsure about my survival.  And for that I'm grateful.

The Boobies
So what's going on with the boobs now? What do I have? What do they look like? Feel like? How bad is the scarring?

What I have in place right now are called expanders.  They were inserted beneath my chest muscles and attached to the skin with a skin graft type thing.  They are temporary, only until I have reconstruction surgery, which will be next summer.  I have to wait until radiation has been over for at least 6 months. The purpose of the expanders are two-fold.  First, they are a form of fake breast - I look like I have breasts. They're significantly smaller than what I'm used to, but I'm not walking around feeling like a pre-pubescent boy. It helps the ego. Second, they keep the skin stretched taut, holding the space for when I have my reconstruction surgery. They feel like those little blue handball balls. It can be a little uncomfortable - almost like I am wearing a pliable plastic bra. They don't move. There is no bounce, no nothing. Which also means no need for a bra. Woo hoo! (Note - I feel naked without a bra. Kind of like going commando, lol. I've been wearing a bandeau - a whole new world for me!)

Scarring wise, it looks a million times better than I had feared it would look. Each breast has one incision. On the left breast, where I have my nipple, it starts at the bottom of the nipple and goes down to the bottom of the breast. On the right side, it starts a little higher up, where the top of my nipple used to be, and just like the other, goes down to the bottom of the breast.

Possible Risks for the Future
There are a few. In order of importance:

First and foremost on my mind is, of course, recurrence of the cancer. Or any cancer. The big milestones are 2 years, 5 years, then 10 years.

Second is possible side effects from the chemo, the antibodies, and radiation down the road.  There are possible heart issues, that's one that I know about.  I'm not too concerned about that right now as it was a no-brainer choosing between chemo and possible future side effects.  The fact that I was so healthy also decreases the chance of having those side effects.

Third is the risk of lymphedema. This is a blockage within the lymphatic system which causes lymphatic fluid to collect and would cause my arm to swell.  This is a condition that, if it develops, can cause a lot of pain. I'm banking on it not developing; however, it is still a risk. I'm also at higher risk of infection in that arm because I (hopefully) have no lymph nodes in my arm, which are an important part of the immune system. As a result, I cannot have any medical procedures done on my right arm.  This includes having my blood pressure taken or having any blood drawn from that arm.  I also will have to be very careful getting manicures, and make sure that the place I go uses sterile equipment.

What's Next
Radiation.  The final leg of the trifecta.  I should be starting within the next two weeks or so.  It will be Monday through Friday, for likely 28 sessions. It looks like they will be radiating two areas - the breast and the shoulder, which between them will get my underarm, where the lymph nodes were. I had an appointment with one radiologist, and he seemed good. I'm going to meet with at least one more before I choose, and I have to make sure the rest of my team agrees with the treatment. They say it will make me tired, but nowhere near chemo tired. Bring it on. After chemo, I can handle anything!

I will continue radiation while I go back to work in September. I'm working all summer to create my units and daily lessons through October at least. Even without radiation, my body is still healing, and my strength is nowhere near where I'm working to have it be, so I'm working to have things planned out everywhere as much as I can to ensure success in all the things that matter to me.

I'm also continuing antibody injections every three weeks through February. There are two: herceptin and perjeta (a new drug that came out within the last year). These two are not chemo, and have essentially no side effects. The injections take a little over an hour. They attack the HER2 (which is a gene or something - google it and see if you can explain it to me, because I'm completely lost in trying to understand it), which is what caused the type of cancer I had.



And that's it for now.  My journey with cancer is nowhere near over.  I still have a road ahead of me, and I will continue to share it with you. It looks like the hardest part is behind me, and I thank G-d for that every day, while I pray that I will never have to repeat it.

Check your breasts.  Go see your doctors. And then go out and live your lives.

Love to all of you, and thanks for reading.

XOXO