Susan! You’re here!

The whole family went with Widget for his first day of first grade this morning, walking two by two in the morning sun.  Widget held my hand as we rounded the corner of his school and found the line for the first graders, and then he disappeared into the sea of kids hugging each other, goofing around, and making each other laugh as they stayed in their wiggly line.  We all waited until the bell rang, parents as happy as the kids, with our own share of happy hugs, cooing at the new babies, and making each other laugh.  Then, quickly as we had arrived, the kids entered the school, 5th graders first, then 4th, then 3rd, then 2nd, and then our own precious babies, disappearing into the red brick building as fast as they could, loaded backpacks and overflowing Target bags flying behind them.

It was done.  Widget and his friends were now elementary schoolers, and all was well.

We lingered to chat a little longer.  Then, as we began to leave with Little Bear, the school principal came flying out the double doors, stopping me with her voice.  ”Susan! You’re here!” she said, with a grin as wide as the flag out front.  ”You must have nine lives, lady!”  We laughed and hugged, and I felt good about leaving my children here once again, and I smiled all the way to the car.

I understand her surprise.  I know she prays for me, and she knows that this cancer – and its treatment – push me to the brink often.  I feel terrible and homebound and sick in bed for days – and then the meds kick in, or settle in, or we rally, and I am able to do things like take my kid to school (with help), or take him bowling for his birthday.

Widget’s birthday was this weekend, and his request was to go duckpin bowling with our family and a couple of friends.  I rested, and rallied, and we went, bowling a complete game and then doling out the quarters as the kids played old-fashioned video games, like Frogger, and Donkey Kong, and a racing game (“Let’s bring lots of 25 centses!” they had asked before we left, and they opened their banks all by themselves for the treat.).  I played pinball, and then rested in the seat of a driving game that didn’t work, as the kids laughed loudly in the little room around me.  I would never have thought that I could do this when I began writing my last post a few days ago – or when I was too pooped to write last week – or when I had a bad reaction to new meds last Monday and Tuesday.  But yesterday, I could.  We took Little Bear bowling for the first time ever, which surprised me, actually, because we had taken Widget so often when he was littler, and I was in remission.  The time had slipped away, and Bear hadn’t gotten to go before.  But he did this time, and both Bear and Widget had a fantastic time, and my husband and I did too, and the resulting sleep all afternoon was worth it.

It was worth it.

When my children read this as teenagers, if they cry at the other posts, I’m sorry, but sometimes you have to understand the bad in order to see how very, very good the good can be.  Taking Widget to school today and celebrating his birthday at the bowling alley yesterday was very, very good.  I wish I could post pictures of Widget’s first day or Bear’s tough-guy bowling stance as he waited for the ball to hit the pins, getting spare after spare, but I don’t, for their safety.  All I can show you is this picture my husband snapped as I celebrated a spare, a strike, and the sheer joy of being out with my family, who I love so very, very much.

Mommy, why….?

I love my kids.  I love my kids more than life itself.  I know this beyond a shadow of a doubt, because chemotherapy is so very difficult and the side effects (nausea, weakness, sleepiness, constant fatigue) so very debilitating that (speaking only for me) I just can’t see doing it every week for the rest of my life if I didn’t get to spend the other six days with them.

The kids (Little Bear, 4.5, and Widget, almost 7) have been real troopers this summer.  They’ve stayed home with me for weeks at a time, emerging only for church and when a friend comes to pick them up for playdate.  They’ve had playdates with the children of Mommy’s friends more times than I can count.  They greet them with a shy hello or a boisterous “SURPRISE!” as they bounce down the stairs and then start talking to our visitors shyly, quickly heading out to the back yard to be pirates on the playset, work in the gravel pit, or just sit and tell each other stories for hours, as they did with teachmama‘s littlest.  They accept dinners that appear out of nowhere gracefully, and they’re learning to eat more and different things, as they’re exposed to that kind of turkey or this kind of cheese that somehow we’ve forgotten to introduce to them yet.  The three of us play play-doh or legos, play board games, or read books together whenever I’m able to sit up and Daddy’s at work.  When I’m too tired, well, there’s always tv on demand, and sometimes we read books in bed together and we all slip into a nap.  When I’m just resting, they’re often in the playroom or the basement, building forts, setting up the army men, or making up elaborate adventures with their toy cars or action figures.  Widget and Little Bear play with each other very well, and only occasionally do they need to be separated or corrected because they can’t get along.  Very occasionally.  Like every third day.  They’re wonderful kids.

The boys spend day after day with their Grandparents when they visit, for a couple weeks at a time in one case and two days every week or two in the other case.  Between the two sets of grandparents, there is always someone there to help when my husband takes me to chemo, and for part of the day before which is so difficult.  We are all so lucky to have such wonderful grandparents and friends — for the side effects of this cancer and its treatment are truly horrible, keeping me in bed for most of the day three days a week, emerging just in time for treatment on the fourth day, and yet the children take it all in stride, for they are loved so much — and they know now that so very many people love them too.

Widget does chores with me when I’m feeling good enough.  He and Little Bear take the laundry from the hampers to the laundry room, sort, and help me shoot baskets with the socks into the washer.  We take the clothes out together when they’re dry, and the kids sort the socks or fold the shorts and each kid always puts away his own clothes in his drawers, and helps Mommy carry the towels and sheets upstairs as well.  They get out their own silverware at mealtime, set the table, and clear it when they’re done.  They’re just now big enough to load the dishwasher with me and empty it when it’s clean, and they’ve accepted that chore too.  We do these chores first thing in the morning and on the weekend, when I’m feeling best.  They don’t realize how much they really are helping me, as taking clothes up and down stairs tires me out.

On Sunday mornings, we go to church, as long as the air conditioning there is working.  Several times this summer it wasn’t working, and it was so hot for me that my arm swelled and my belly swelled and I went straight to bed afterwards.  That was the end of the day.  So some days, I admit, we miss church, and I feel bad about it.  But we usually go, and it’s nice to sit together as a family.  The children lean sleepily on us while we listen to the homily, and we all pray the Lord’s Prayer out loud together.  The kids know how to make the sign of the cross and to walk nicely up for communion with their Daddy and me.  Little Bear sometimes sprawls out on the pew and tries to sleep, but Widget sings the hymns with me and he listens.  Oh, does he listen.  On Sunday, all was well and we were doing fine, when all of a sudden, during the pastoral prayer, he leaned over to me and whispered, “You’re back on the list.  Why are you back on the list, Mommy?”

and my heart sank as I realized that he had heard the prayers for the sick and there was my name, front and center.

He looked at me with real surprise, and I put my arm around him and hugged him, as I watched a bit of his world come crashing down.  He looked at me innocently and waited, and I hoped that he wasn’t putting together the pieces of how he had been helping me more, and I had been napping more, and so many people had come by to sit with me recently, bringing along lunch or dropping off dinner.  My world started to spin a bit, and I had to catch my breath before I told him the truth, as I always have:

You know how Mommy’s been so tired lately?  They’re praying that I get better soon.  Okay?

and he nodded, and we kneeled with the congregation, but my heart beat so fast.  The child that I prayed would be bright and curious and ask questions, asking “Why, Mommy?” about the birds and the trees and the color of the sky had finally asked the one I didn’t want to hear.  But I answered it, and kept my arm around him, and we left church a little early that day, all four of us squinting in the bright sun.

The chemo port – and a new bit of hope

After spilling my heart out to you on Wednesday and tossing and turning for hours, I finally fell into sleep, only to be awakened by my little one and his fears (the scary trees outside his window) at 4 a.m.  A few hours later, my hubs woke me up in the boys’ room, where I’d accidentally fallen back to sleep while comforting Little Bear, and we headed down to the hospital for my chemo infusion.  We don’t tell the kids exactly where we go when we go to the hospital these days.  They know we go for an appointment, and they know I’m ill, and that’s enough for them right now.  Better we get them settled into school and deal with normal little-kid fears and transitions for now, and work the cancer stuff around their comfort with the new-teacher, new-friends shuffle first.

After my name is called at the cancer center, I’m ushered back to sit in the oversized chemo chairs, one per curtained area, each paired with a small, uncomfortable chair, where the patient’s support person can perch as she or he holds the patient’s hand.  The other hand is held still by the chemo nurse’s elbow while she punctures the vein — or vein after vein, as she tries to get a good stick, where the IV slides nicely into the patient’s vein and stays there, ready to deliver the chemo.  I’ve had some horrible times in that chair over the years.  Nurses have missed my vein, popped my veins, rolled my veins, and all kinds of ugly during the 6 months of chemo I had in 2007 and monthly or quarterly lab draws and tests since then.  The chemo I need now, however (Navelbine every 2 out of 3 weeks and Zometa every 3 or 4 weeks) doesn’t go through an IV.  I needed a port.

I have a port now, and I mentioned it before, but I don’t think I showed it to you.  Here’s what a medi-port or a port-a-cath looks like, in cartoon version, unfortunately, but if you’re strong of stomach, you can always google image search port-a-cath and see one planted in many different patients and survivors.  There are many strong smiles out there, and it’s actually rather impressive to see so many strong women and men (and children) voluntarily getting this port for chemo and its nasty side effects, all in effort to live a little longer.  It reminds me that I’m just one of so, so many cancer patients today.

So I have a port now, and on chemo days the nurse gloves up, wipes the bump on my chest clean, and pushes a device into me that will attach the tubes outside my body to the tube inside my body that winds from the port to the jugular vein in my neck.  There’s a cut on my neck from the surgery, and I hope it heals soon, because with most shirts the port and tube itself aren’t at all visible.

The device is called a needle assembly, and it looks like this from the patient’s perspective, with a 19 gauge needle coming out the bottom and into my skin.  It’s a beast to wear on chemo day, but it sure does make withdrawing blood for labs and accepting all the various IV medications and such easy.  The nurse says it will be less tender after a few more weeks.  I’m glad to hear that, because it’s been more than 24 hours after use and it’s still tender.  (I tried holding an icy diet coke can on it to calm down the tissue — it totally helped!)

Because the cancer is in my spine now and I’m so uncomfortable, when there’s space, I sometimes rank a bed in the chemo unit, which is nice, because it’s quiet and I can get my morning sleep in while I wait for the lab results and everything else to come back – once they come back normal (or normal-ish), then the order goes into the pharmacy and they begin to mix the chemo.  It takes another hour and a half after that before the infusion starts.  But my cancer center is a good one, and well-funded, and we each now have a small flat-screen tv and cable to entertain us with, as well as a decent wi-fi signal.  It’s a pleasant place to get chemo, and I don’t mind it nearly as much as I used to.  But it does make me tired.

I’m not sure where today’s post was going, really, but I wanted to show you the picture of my port-a-cath and needle assembly, because it freaked me out a LOT at first, but now it’s just a part of me, and I’m learning to get used to it.  Just please, don’t hug me too close on my left side for a while – there’s a new bump there, and it’s tender.

…

Oh, I remember now!  The new bit of hope.  When we met with my oncologist yesterday, it was the first I’d seen her since my hospital visit, and I was pretty groggy then as they fed me all that pain medication.  We talked the situation through again, and we have some new hope.  First, we added the Zometa infusion back to my treatment regimen, and this will help to build my bones.  It wasn’t a failure earlier this year; Zometa doesn’t help keep the cancer from growing at all.  What it does is strengthen the bones so that the effects of the cancer cells in the bones are lessened.  We’ll keep doing that, and hopefully it will work and my bones will get stronger.  Second, we made a medication change to help me with some side effects.  And third, when we asked her about the overwhelming fatigue, the tiredness that is impossible to overcome, and the exhaustion that sends me back to bed every three hours, she was able to help, and to give me some hope.

The fatigue may not be from the cancer destroying my bones.  The fatigue may be a side effect of the medications.  Both infusions have heavy fatigue as a side effect, as do both of my pain relieving medicines (opiates), and another pill that I take for anxiety and hot flashes, side effects of (very) early menopause.  The combination is almost a guarantee that I’ll be tired, but no one expected me to be this tired!  So I’m to rest when I need to (which is still a lot), but next week I’ll start a sixth medication that will counteract this side effect of the first five.  I’m not anxious to add medication, since I’d be an all-natural organic girl if I could, but at this point my body chemistry is anything but natural, and that is what is keeping me alive.  So, a sixth medication it is, and I can’t wait to be able to be awake for a whole afternoon!

To think that I may be able to reclaim an afternoon without sleep?  That would make everything more possible.

Wishing each of you a good weekend,

Susan

Tired and hurty and scared.

I’m not always brave, you know.  Despite your lovely comments, I feel less and less brave these days, these days I spend in bed, resting up for the times I can get out of bed and spend with my kids – playing board games, or cars, or legos, or, more often than not, having them crawl back into the bed with me and cuddle while we watch Phineas and Ferb or How It’s Made or Build It Bigger - tv that captivates all of us, and is the background to Mama snuggles, so that no one notices how quiet Mama is again or how we’re not going out again today.

The days still run into each other, one after the other a mix of naps and rest and tv and computer games; Widget and I are playing an online game called City of Wonder together; I’ve let him set up his own account and make his own decisions and adventures and mistakes, and in return he asks me for advice and lets me peek over his shoulder.  It’s adorable to see him so grown-up, and it lets him stretch his wings.

As long as I pace myself, I do okay, unless I’m late taking one of my medications.  The oxycontin I take around the clock needs to be at a steady level in my bloodstream to control the cancer pain – cancer has replaced bone in several vertebrae, and in one set they mash together, squashing a nerve and causing the pain that appears to be in my ribs.  If I’m late taking the medicine, the pain starts to hurt and then gets quickly out of control, taking me from “fine” to OMG I’M GOING BACK TO BED NOW in just 15 minutes.  It happened on Monday, when Jess and Kristen were here, and I went downhill pretty quickly.  I took a supplemental medicine for breakthrough pain, but when it hadn’t worked after an hour, they put me to bed, and let me cry, and spill my fears out on them like a dropped sippy cup that broke its lid.

It wasn’t pretty.  It often isn’t pretty.  It’s so ironic, isn’t it, with all the pretty pink ribbons and cutesy campaigns urging hope — that the real life of a cancer patient has nothing to do with pretty, and everything to do with blood and poison and knives and fighting and rest that doesn’t take away the tired.  Gayle Sulik says it better than I do – her book Pink Ribbon Blues demands that we peel away the pink and ask for the facts underneath.  How much of this product or promotion goes to research?  For only research will result in the cure we need – the cure we all need – for we’re learning now that even women who are diagnosed today, if their cancer will metastasize to the bone or lung or liver, it most likely already has.  The seeds, way too small to be detected at this point, have already been sent to near and distant body parts, and they are already working to take the woman’s cancer to late-stage, even as she reels from the shock of a new diagnosis.

They didn’t know that when I was diagnosed, just four years ago.  They said that we could fight off recurrences, with diet, and exercise, and nutrition.  And while that good behavior may postpone recurrences (we don’t know) or postpone initial onset of disease (as it should – make that body HEALTHY and it has a better chance of killing those nasty stray cancer cells popping up in bodies everywhere), in the end, if the cancer was destined to spread, it probably already has.  And that, my friends, is hard news to hear.  Damn near impossible once the cancer is in your own body.

This isn’t easy and fun to read, I bet.  I’m sorry about that.  I’ve tried not to write until I could write something pretty, something grateful about the fun times I had at Type A Mom, or the beautiful dress made out of stars that Elena and Stacey and I found together, or the magical moment that the DC Moms had with the Bloggess’ red dress, now on its way back to her, but I’m preoccupied these days.

I hurt.  I’m tired.  And when I am so tired that rest isn’t enough, and the hurt is so deep and has been there for so long now, I get scared.  Really scared.  About the future.  About the future of my boys, and who will care for them when I’m gone, and how soon that might really be.  About what I should do to prepare (laundry? photo books? letters for each of their birthdays until they turn 21?) and when I should start.  About how they’ll take it, and if they’ll let themselves cry, and when they’ll be able to stand tall again and know that they. are. enough.  That Mama loves them with all her heart, but they. are. enough.  And they are ok.  They will be ok.

I know they will.  I know I will.  I’ll gather my strength and buck up and try again to do this gracefully and bring happiness, not tears, to my friends and colleagues and readers, but right now?  I’m tired, and hurty, and scared.  Three words that kept coming to mind as I pulled the blanket over my head on Monday and tried to rise above the pain I felt, even hours after Jess and Kristen left and my husband came home early to comfort me.  But it’s a cycle.  My body is tired from fighting the cancer cells inside, and their presence (and bone loss) causes pain.  And when I’m tired and hurting, my defenses slip and the fear comes wooshing in to join them.  And then that’s all I can think about.  Or at least it was, until the door opened late Monday afternoon

and my babies crawled into bed with me for a snuggle, seeking comfort, and I almost laughed in relief that I could wrap my arms around their little shoulders, and hug them tight, and snuggle as we turned on the tv and they began to relax and laugh again as we watched cartoons together and reveled in that word – together.

…

My friend Elena has started a new web site, Just Be Enough, which is beautiful in concept and in execution, and today she has a new initiative – by leaving comments or links on Monday’s posts this month, you can help give cancer patients like me (but without my resources – I am really so, so lucky) a beautiful photo book to help each remember the good times, to encourage them in the bad times, and to help their loved ones remember the good days, always.  It’s stunningly beautiful, and done in partnership with Bellflower Books and Crickett’s Answer for Cancer, who you know from our lymphedema project.  Please go read more about the memory book project, and support her, as she has supported me so many times.

Thank you.