True friends

November 18, 2008

True friends are hard to find.  I’ve discovered this year that I have more than my share, however.  Friends to play with, friends to walk with, friends to work with.  Friends who will watch your kids at the drop of a hat.  Friends whose kids you want to watch, just cause they’re fun.  Friends who bring you goodies “just because” or surprise you on chemo day with a pink bag of sunshine.  Friends to blog with and friends to plot with.  Friends who will call you in the hospital, and come by and not blink — even if you forgot to wear your hat, and you are having a “no hair” day.

Yesterday, a friend went above and beyond for me.  A thousand thanks to my good friend R who took me to the emergency room and stayed for my tests and diagnosis, cracking jokes and telling stories, listening to mine, and just being there for me when I needed her.  It was hard to pick up the phone and ask her for help … but it would have been a thousand times harder to be alone again in the emergency room.

Thanks, R.


You’re a good patient

November 17, 2008

Just another night in the E.R.  Sigh.  Apparently it was just a muscle spasm (why make you wait for the diagnosis?), but the pain was unbelievable on Sunday, and it was difficult to get a full breath.  Something was really hurting my back ribs, and, as the day went on, I got really worried.  My primary care physician couldn’t help me on Thursday (see last post), the PT couldn’t help, and I just saw my lymphedema therapist.  Where to turn?  Out of answers and in pain, I went to the ER for a quick x-ray to check if my rib had broken with the latest manipulations.

It was easily the quickest ER experience I’ve ever had (with the exception of going with my friend L on vacation).  At check-in, I was triaged to Express Care, a new setup in the hospital for lesser problems and those needing quick radiology.  In great pain and bent over a bit, I was seen quickly; a doctor even walked up to me while I was checking in, asked me what I needed, and got me in line for an x-ray before I even got settled in an exam room.  The x-ray tech came soon, and she and a colleague even fought over me briefly in the hall.  The second tech won, and I was hustled inside for a spinal x-ray.

The second x-ray tech cracked me up.  There was a lot of “Hey, I need the practice!” and “Oops, I’ll buy you dinner later,” and “Sorry for feeling you up again!” which just made me laugh because I just totally didn’t even blink when she moved me into position and out of the various x-ray postures.  We chatted and laughed and she reassured me that it was just a little radiation, nothing like what I got last spring.  At the end, I thanked her, and she said, “Oh, sure, you’re a good patient.”

You’re a good patient.

Hmmmm.  I suppose so … but I’d rather not be a patient at all.


Two steps forward, one step back

November 15, 2008

Two steps forward, one step back.  Something happened last weekend to my back, and I couldn’t figure out why I was in such pain.  Bretta’s diagnosis helped, but when I went to the doctor and PT later in the week, they both blanched at the report that I had 3 ribs and 5 vertebrae out of place.  The PT refused to treat me, sending me to another PT, a specialist.  The doctor, well, let’s listen in on part of the conversation that she and I had when I went in on Thursday.

Me: I’ve just finished a year of treatment for Stage III cancer, and I seem to be having some side effects.

Dr.: Okay.  What kind of side effects?

Me: Well, the right side of my back hurts a lot.  My lymphedema therapist thinks that the muscle underneath my arm was fried a bit by the radiation, and it’s pulling across my back and pulling the ribs out from under my spine.  After months of trying to figure it out, we think that’s what’s happening.  I need a treatment plan.

Dr: A treatment plan?

Me: Yes.  I need a referral to a PT in my health insurance plan who can help me with the muscle, to my radiation oncologist for my 6 month checkup, and to a specialist who can help me with the pain.

Dr: We’ll see about that.  I’m not giving you anything until I examine you.

Me (meekly): Okay.

Dr: Take your shirt off.

Me (doing it): Okay.

The doctor brusquely makes a note in my chart and turns away to check something.  When she turns back around, I’m naked from the waist up, all scars and burns and lumps in strange places.

She blanches.

Without touching me, she looks for just a minute, and then says, “Okay.  Now let’s get you those referrals.”

Harumph.

I walked out of there 15 minutes later with 3 referrals and a promise to help me get the lymphedema treatment covered too.

I’ve never been so relieved to be so visibly damaged.


Off my chest

April 9, 2008

I don’t know that you want to read this today.  It’s here because I finally wrote it down last night at 3 a.m. and I promised to share everything about this journey with you.  Well, this is part of everything.  If you want to click away, that’s fine.  Here’s a great place to click that will make you feel good about all the good in the world, and even give you a chance to be a part of it.  But for those of you who stay — I need to say this out loud.

I am not afraid of dying.

I am afraid of being stuck.  Here, in this bed again, comfy though it may be, alone and tired.  Helpless.  My brain perfectly fine, at least after a stretch and some exercise (hello, twitter!), but my body deadened to the world, still, motionless.  Unable to move substantially day after day after day.

Listening to my children play downstairs with someone else, I ache at every laugh. 

Later, in the middle of the night, my thoughts wander to how things will change, when I get better (we’ll eat right! play outside every day! invite friends over!), and then, when, inevitably, I get worse again.

I wonder if maybe we will get a hospital bed downstairs, when the time comes, if we’ll put it midst the playroom, with its hulking rolling wheels crushing matchbox cars and trains and other things little boys make go ZOOM! 

Zoom was Little Bear’s first word, or one of them at least, and I wish I could remember what the first one actually was.  I was there, I know it, but I can’t seem to pull it out of my brain. 

Today, though, today I remember.  Today I was holding him gently after his bath, looking into his eyes and giving him a little tylenol to help relieve his teething (1 year molars — all at once!), and he said YUM.

Bear is a strong little baby.  A little boy, really, from the moment he came out of my womb, sat up, and looked around at the doctor and nurses, me and WonderDaddy, as if to soak it all up before deciding whether to laugh or cry.

He is a very strong kid, pushing me away even as a newborn at the breast, and now when he twists in my arms and kicks my radiation burns, I am ashamed to say … it hurts.

Bear is being raised by his Mommy and Daddy and Grandmas and Grandpas and friends — and he is thriving.

But a small selfish part of me wants to still be his world.  Like it was before.  In the old days. 

Before I got cancer.

My oldest child and I are joined at the heart.  He doesn’t know life without me; I am his constant companion and best friend.  He told me so, once, when he had just learned the concept, and it melted my heart completely.

Now he is growing up.  At 3 1/2, he has deemed himself too big for kisses and hugs, unless he is very, very sleepy.  He “wipes ’em all off” with those words and a determined swipe of the back of his hand or tells me declaratively, “Me not like your kisses, but me still love yoooooooou!” which makes me love this independent, attached, bonded child all the more.

I still watch him sleep sometimes, whispering in his ear that I will always love him, that I will always keep him safe.

I stopped doing that for a while, worried that I was making promises that I won’t be able to keep, but I have consciously started again.  No matter what, I will always be with him.  I am confident of that now.  I will get better, and I will protect them and laugh with them and help them and teach them and discipline them when absolutely necessary.  I will.  But then, if and when the day comes that I cannot be here with them any longer, I have a plan.

If I can no longer be with them here on Earth, I will be with these children in spirit.  I have thought about this, prayed about this, reasoned about this, and am determined beyond all doubt to make it so.  I have wrestled with a physicist’s conscience and a presbyterian’s heart, and come out the other side with a modicum of peace on this issue. 

I am assured now that I will be their angel, tripping along in my wings if I get them, safeguarding their every step, and picking them up when they fall anyway.  I cannot imagine ever letting go of such love, this baby-tickling, preschooler-teaching, both-ears-listening, all-encompassing mama love, and I will be with them always, in spirit if not always in body.

This body — it’s seen better days.  The light of my child’s nightlight reveals scarring and bruising and broken bits where there were none just four years ago, when this nursery was new.  My arms are scarred with holes from the chemotherapy injections, the veins closed, the hands dotted with dark spots where they were used as well.  The muscles in my arm are twisted and scarred with nerve damage from the surgery and swollen with the lymph that no longer remembers where to go on its own.  My breasts are now only a jagged line, port to starboard, and my belly a hollow reminder of the joys of carrying the boys there, long ago, before they were born.

Before they were born, I was a woman and a scientist and a friend, but not yet my whole self.

My heart grew and expanded beyond all measure, with the arrival of each of my loves.  WonderDaddy first, then Widget, then Little Bear, all crowded now in bed with me, piled one around the other like a pile of sleeping puppies.

Only I cannot sleep. 

I lie awake, not afraid of dying.

Afraid of being separated from this, my love.

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