Ma’am!  Ma’am!  Strollers aren’t allowed inside.

Did you hear me?

Strollers aren’t allowed.

As I walked up to the table where the volunteer would take our tickets, I hesitated, wondering if perhaps I should just turn around and go back to the car.  I have two little children who want to see the butterfly exhibit, but I also have lymphedema, a swelling of my arm that at times is so severe that it is difficult to lift a drink of water, much less a child.  I’m wearing my lymphedema sleeve and glove, helping to move the lymph around and restore proper circulation, but it takes days to work and sometimes I need a professional’s help.  In any case, I can’t lift or carry my 15 month old for more than a minute or two.

But here we are at the butterfly exhibit, and the ticket taker is bellowing at me, catching everyone’s attention, or so I imagine.  My friend murmurs her help, and I thank her, but this is something I must do for myself.

I walk up to the booth, push the stroller discretely to the side, and say, “I’m sorry, but I have cancer.  I can’t carry my little boy.  Could you make an exception?”

Two supervisors later, the answer is yes, and I am ushered into the butterfly house, only to meet a very tall and very stern man at the entrance.  His words echo through the plaza:

Strollers aren’t allowed inside.

Eventually, the prohibition is lifted.  My friend brings the older boys to the entrance, and we all enjoy the butterflies together.  I spend most of the time crouched down by my baby in the stroller, tears in my eyes, showing Little Bear the butterflies.

It was so worth it.

…

In memoriam: Deirdre D, after a 3+ year fight with IBC.  Deirdre was known to me only through the list, but I followed her battle and mourn for her today.  She leaves behind a five year old son.

Tonight, after I stumbled into the building with the shock of memory, I had the good fortune to meet a new breast cancer survivor.  She was diagnosed just three weeks ago with Stage IIIA breast cancer, and she starts chemo next week.  She’s worried about it, but grateful that she has lived so much of life already (she’s 44, decades older than the youngest in our young survivors’ group).  She has made plans for her chemo fight, and knows that surgery is next, once the tumor shrinks sufficiently; she seemed confident, but something about her made me pay close attention to her story.  As it turns out, we seem to have a lot in common.

We both had locally advanced breast cancer.  The term usually means Stage III, whether a large tumor (10 cm is not unheard of) which is called Stage IIIA, or inflammatory breast cancer, which is called Stage IIIB or, in a new taxonomy, IIIC.  (The grades range from Stage 0, precancer, to Stage IV, metastasis.)  We both had visible evidence of our cancers, perched on our chests.  We saw one breast enlarge with tumor, and we wanted it gone.  We both feared the cancer, but were taking it on with a fighter’s attitude, with confidence when possible.  We both have little boys.

Here are the things I wanted to tell her, to make it easier.  I tried … but some of it, she won’t need just yet.  I hope that if she needs it later, she or someone else will find this.  I’m titling this post locally advanced breast cancer, just in case.

• Yes, chemo is hard.  Terribly hard.  But it is the thing that will fight this cancer and make it operable;
• You may not feel sick the day after chemo, but watch out for Days 3, 4, and 5.  It may hit you later than you expect;
• If you don’t see immediate results, don’t despair.  It’s common to not see anything change after the first treatment and even after the second treatment.  But by the third treatment, you may see visible changes in your breast; the swelling may go down and it may get physically lighter;
• The tumor will keep growing until the chemo has a chance to act on it.  Buy new bras for support if you outgrow yours.  It’s not a waste of money; it will save you from back pain.  Oh, and it’s okay to just throw them out when the tumor shrinks, as it will, or you have your surgery.  When the swelling/tumor goes down, that’s a good thing.
• There is support for families with cancer.  In our area, there’s a program at The Wellness Community and there’s another through the national CancerCares organization;
• Yes, it is awful for the kids.  But they can handle it and will emerge stronger and perhaps more sensitive than in the alternate world of no cancer; and
• Although they’ll want to take your blood each week before chemo, you can request a finger-stick instead, and that will help save your veins.

Once you get better, you may feel so good, and wonder why you didn’t notice before that you weren’t up to your normal strength.  That tumor … the one the doctors just discovered … has been living on your energy for a while now, and sapping your strength.  You’ll get it back.  Just fight the cancer and take your time.   Oh, and do it your way:  Work, play, rest, pray.  Find out what gives you solace and makes it bearable, and actively call on your resources to make it through this year.  It’s gonna be a tough one.

Oh, and one more thing, in case you were wondering as an intact woman in a room full of missing or reconstructed breasts:  do what you feel is best for you on that topic.  It’s totally up to you.  As for me?

I still don’t miss ‘em.  I run faster and farther without them.  And I will, for the rest of my life.

As I jogged from the parking lot to the young survivors’ meeting tonight, I felt amazingly good, breathing fresh air, moving at a pace that my mind and body set together, one not defying the wishes of the other, sure to arrive at my meeting with minutes to spare.  I took each loping step with purpose, thrilling in the ability to hurry, which I had not been able to do for many months.  As I kept moving, passing the lounge where I used to wait, passing the closer entrance, passing the valet parking sign, I breathed in and out evenly, relishing my pace.

And then, I stopped short.  There was the parking space where WhyDaddy used to leave the car so he could help me to the door, just feet away.  There was the sign that I leaned on, more than once, while he handed the keys to the attendant and then rushed to take my arm.  There was the second sign, the one where I collapsed just a few months ago.

Just a few months ago, I was right here, in front of this hospital, when I was forced to admit that I could no longer walk.  I needed a wheelchair.

…

I remember that day like it was yesterday.  Without even checking that day’s post, I remember every. single. detail.  The effort that it took to walk the steps from the car to curb, even with my husband’s help.  The eternity that passed while he was away from me, getting our laptop bags out of the car.  The sensation that I was falling, falling, falling, when my legs buckled and refused to support me. 

The way that WhyDaddy became WonderDaddy, dropping his bag and mine and running inside to get help.  The seconds that felt like hours while I held on to the post, willing help to come, watching the world pass me by in an instant.  The speed at which he ran back to me, pushing a wheelchair as if it were weightless, catching me in it before I fell.  The calmness of his manner, the ease with which he thanked the valet for the loan, and the grace with which he found our laptop bags again and slung them over his shoulders.

The way that he made me feel that it was no big deal to be 34 and so sick that I needed a wheelchair.

…

I learned a lot that day about how we treat people who are different from us.  I felt abandoned when my partner accidentally turned away, and a swell of gratitude when he returned and parked himself across from me so we could talk.  I panicked when parked facing a cold wall, primitive terror striking me with the thought that I couldn’t see anyone or anything else in the room.  I watched as hospital personnel ignored me, talking to my partner about my affairs, as if my brain were as dysfunctional as my legs.  I remember the looks of pity that just about broke my heart.

Do not pity me, I thought.  This is only temporary….

If I walk fast enough, far enough, I can outrun the cancer.

Four miles again today.

I am haunted by an image that lives only in my fears.  It is an image that I worried about last summer, only weeks after I was diagnosed with inflammatory breast cancer:

a young mom, bald, struggling to push a stroller with two baby boys

It’s an image that I worried about for a long time because I was afraid of being seen in such a state of weakness. 

Ironically, the image that I feared never became reality.  As I lost my hair, I lost my strength, and I was never able to take a walk again.  From June to April, I was struggling to walk, to sit, to even lie on the couch and play with my children. 

But now it is May again, the flowers are in bloom, and the weather is perfect for strolling.  I have cleaned the cobwebs off the stroller, put on my walking shoes, and I am walking, once again, one or both little boys with me, keeping me company and cheering me on when the hills get high.  We are walking to the park, watching the squirrels scamper over driveways, listening to the birds cheeping in the trees, smiling at the children playing as we pass.

And we are passing them, because we are walking once again. One, two, three, four miles a day.  It seems unbelieveable that one, two, three, not even four weeks have passed since the last radiation treatment seared my skin with the promise that cancer cells will not be able to live there again.

Three weeks.  And yet, every day I am stronger.  Every day we go for walks, and instead of being worried that people will see us, point and laugh, I am delighted that people can see us, that they can see ME once again.  I am no longer alone in my bed, watching the world out my window.

I am wearing my Avon Walking tank top proudly today, and I am walking.