"new normal"

Friday, September 9, 2011:

Surreal, that’s my word of the day for today.  According to the definition it means... “bizzarre, weirdly unfamiliar, distorted, or disturbing, like the experiences in a dream or the objects or experiences depicted in surrealism.”   Yep, that pretty much says what I felt today.

I thought this was getting to be routine and I was 'adjusting' to the whole idea that Jacob is fighting cancer...and then these moments come along when everything in life is just "surreal".

I try to think about what life used to be like and I can’t remember.  It feels like a dream, but I don’t know which part is the dream. The life before cancer or life now, living in ICS, fighting cancer with my son, sharing my world with other moms going through the same experience. It’s hard to explain, but ‘surreal’ is a good word.

The day started out nice. I was able to go home and sleep with the other kids for the past few nights.  Josh had been coming to the hospital to stay with Jacob for the night and then I come up when he leaves for work.  I love being home with them and sleeping in my own (new) bed, but nothing feels the same anymore, nothing feels right.  I drove through the old neighborhood the other day when I had to pick the boys up from the Petty’s house after school. The street brought back feelings and memories of our boys riding their bikes and heading to the park together. I could see Jacob walking home from school-it seems so long ago, when the three boys walked home together on that familiar Road. 

At home with the boys, I just don’t function like I used to. It’s like I have to start over every night when I am with them and think about the routine there. Listening to their days at school is overwhelming sometimes. They are all so happy to have mom with them, they all want to share something or just sit close to me every moment. I love it, but I feel myself going into overload sometimes.  They don’t understand why I look at them like I do sometimes, why I hold on a little longer when they hug me goodnight, why I cry so easily and sometimes actually get angry so easily too.  I hope this stage will pass. This “new normal” is just not normal at all.

When I got to the hospital, Jacob was awake and I got there just as Josh had to leave.  I was glad that Jacob didn’t have any alone time this morning. He had been running a fever through the night and I didn’t know what to expect.  Things can change so quickly when a fever starts.  It means his body is fighting something and we don’t usually find out for at least 24 hours what it might be.  Some infections can be life threatening, all fevers are taken very seriously in ICS.

He seemed to be doing fine.  He was sipping water, sitting up in bed and told me he felt ok.  Since he was wide awake, we decided to watch a movie together.    I had rented the movie “Stand By Me” the day before and was looking forward to watching it with him.  I thought he would like it and I loved it as a kid. It’s just one of those movies you gotta see at some point and he never has.  It was great, we laughed all the way through and found a new favorite.

The movie ended just in time for me to go to the Parent Lunch break that happens about once a month.  Kneaders was hosting the lunch and they make great sandwiches.  A lot of parent’s came, but most of them just got a sandwich and went back to their rooms.  Only about 5 of us stayed and ate in the conference room together.  As we sat down together to eat lunch, that’s when the feeling began.  We talked and visited together, me and 4 other moms.  The conversation of course revolved around each of our kids as we calmly told each other our personal horror stories…

Steven’s mom told about his Osteo-sarcoma, bone cancer.  His was in his knee and they had to amputate his lower leg and by re-attaching his foot in reverse, he can now use his heel as a joint.  He’s doing chemo this week to make sure they get all the cancer and it doesn’t come back somewhere else.

Sadie is Graham’s mom, she talked about how she knows so many people who have had cancer and we all chatted about the weird coincidences with kids and people who get cancer in clustered locations.– She said she can name 20 - not even counting the ones she has met here since little Graham was diagnosed with an extremely rare form of AML leukemia that is just in his skin.  Graham was 4 months old when he was diagnosed.  His little body has had a tough time with treatments and chemo.  He’s one of my favorite little guys up here cuz he’s been to heaven and back again.  He’s a fighter.

I was glad to get to know Samantha’s mom a little bit, but hearing her story was tough.  Samantha has Ewings Sarcoma and she had a tumor that wrapped around her spinal cord.  She collapsed one day on her way to school and had to go through surgery the day of her diagnosis to remove the tumor.  She had her vertebrae fused together so she could be stabilized and walk again, but she had to learn how to do that all over again at 6 years old. Samantha’s here for more chemo too.

John’s mom, Kelli came a little late and we invited her to come sit with us.  John goes to the same school with Jacob and they both played Brighton football although on different teams.  He got cancer in his kidney 2 ½ years ago.  They took out his kidney and he went through all the chemo to clear the cancer.  After 18 months of remission, his cancer came back in June.  Now, he’s here for a bone marrow transplant too, just three weeks behind our transplant schedule. 

As we visited and shared our stories, I found myself watching the scene-as if from outside, as a bystander.  We told our stories of our personal nightmares, any parent’s worst fear. We talked about the struggles, each of us with our different family dynamics, juggling other kids, family life, household stuff, travel to & from primaries etc. We talked about our new “skills”, how we learned to administer TPN through our kid’s central lines while they are at home, medications and their side-effects, long term and latent effects our kids will have forever, symptoms that led to their diagnosis and various types of Bone marrow transplants.  It was just conversation and we were all past the tears. We each shared some of our pain without a single tear…but we could feel it and I know that we can each see past the outer skin and see the tears inside. We were all feeling it and understood each other like no-one else can in the world, unless they have experienced this kind of pain. The tears are inside, and they never stop, they are just below the surface and there’s a part inside of each of us that just wants to scream.  We all admitted that although we look strong now and it looks like we’re doing ok, we still have those moments when we just have to cry, for reals.  For me, it usually happens when I’m alone in my car. I guess I feel safe there-or not safe, I don’t know. But, it still happens a lot.

After lunch, I went back to Jacob’s room.  He was still awake, so we watched a little TV together. He was watching Funniest Home Videos, so we had a few good laughs.  –great therapy!

Jacob got some platelets so I went out to pick up his new “bead of courage” for platelets to go on his long string of beads we have collected for all his days of treatment.

As I went down the hall I saw Bonnie and Kristi, a mom I hadn’t seen in quite a while, standing together. They were admiring the gold ribbons that I had put all over the ICS unit a few days earlier.  The last time I saw Kristi was the day before Mother’s day.  She was doing her son’s laundry getting ready to take him home and she was so glad that they would be able to be together at home on Mother’s day. Bonnie asked if I remembered Kristi.  Of course I did.  I think of her almost every day.  She was one of the first moms I met after Jacob was diagnosed. As I looked at her standing in the hall with her own box of ribbons, a flood of emotions came back to me.  All that stuff that was just under the surface came rushing out.  I reached out and gave her a hug and then found myself unable to let go.  The tears came for both of us and we cried together and hugged for a very long time.  When we let go, I told her how perfect her ribbons were and asked if I could have one to wear.  She told me where she found the little heart-shaped brads that held the ribbons together and how her fingers were sore from making them.  One nurse came over to give her a hug, and then another, and another… she held it together so well. It had to be so hard for her this first time back in ICS since she lost her precious and valiant son Tanner to AML Leukemia, the same cancer that Jacob fighting.  Tanner was nineteen.

Back in my room, I had to hide in Jacob’s bathroom for a few minutes and just let go. Seeing Kristi brought back all the emotions that came with diagnosis.  She was one of the very first moms I met at the little breakfast cart that comes around our unit each morning.  Most of the other moms I met then are ones I have kept in touch with and we saw each other on subsequent rounds.  Kristi is one that I only saw during that first traumatic round of chemo for Jacob and she represented so many things to me including my worst fear.  After a few minutes, I went to the sink and splashed water on my face for a while until the bloodshot in my eyes began to dissipate. I ran a brush through my hair and refreshed my makeup, a little new mascara and a few deep breaths and I was ready to face the day again. Just about the time I got control, a nurse knocked on my door to say Kristi was outside with her box of ribbons.  She offered to let me take a handful of them to share with the rest of my family and give some to the other moms here.  This time, I was able to go out with a big smile and I just had to apologize, feeling so silly and humbled by my little meltdown. 

It still hits me sometimes, more and more often when I look at Jacob, think about the boy that he is inside and compare to the boy he appears to be now. This afternoon, after I thought I had pulled myself together and thought I just wanted to sit by Jacob, maybe watch a movie together, gather my thoughts and write some of these feelings down, Jacob again reminded me of the battle he is fighting inside.  He woke from an afternoon nap saying he was freezing in here.  I went to him to “tuck him in” a little or rub his legs to warm him up and he began to shiver.  The shivering escalated quickly until his back began to hurt.  He knew what was happening, but he couldn’t stop it.  The shivering was making his muscles contract and spasm.  His neck and back hurt so bad and locked up in pain.  Shivering turned to shaking and I got him some hot packs to hold under his blanket. It works like a little heater under the covers.  That wasn’t enough.  He wanted three hot-packs under his shirt, one on the back of his neck and one over his ear.  I also put one between his feet and put socks on him.  …still not enough.  I asked the nurse for a warm blanket.  These are the blankets they actually keep in a warm oven and it’s hot when they lay it on him. We put that warm blanket underneath his blanket, then covered him up with his own blanket-and then I laid down beside him to hold the warm pack over his ear and he wanted my arm across his chest.  Still, he shook and shook.  The whole bed shook with him and he groaned and cried out from the pain and frustration of not being able to control his own body.  There beside him, I held him as he shook for close to an hour.  Every 10 minutes we waited for the little light to blink on his pain medicine dispenser so he could push the button for another dose.  I prayed out loud for him and cried quietly until the shaking stopped and he finally slept. 

When he woke up about 30 minutes later, he was a little swollen looking and a little delirious. We checked his temperature and just as I suspected, he had spiked a fever: 39.7 c – or 103.5 f.  He had stopped shaking and now he was hot.  We took off the extra blankets and checked his blood pressure and other vitals. Blood pressure was a little on the low side, but nurse Dave reassured me that he was just fine and gave him some Tylenol.  They’ve seen this before, they see it every day. He’s just another patient and they think they know just what he needs.

The Doctors, the nurses, the techs and all the professionals that work with him now and see him every day…they don’t know him at all. There is only one nurse who actually has the advantage of knowing the real Jacob.  He was Jacob’s Jiu-Jitsu trainer long before diagnosis.  He’s here with Jacob today and there’s always a little different attitude when Manny’s on duty.  Jacob trusts him and seems to know that Manny doesn’t label him as just another kid here with cancer…not that anyone here does, but sometimes it can really feel that way. Manny has seen Jacob on the mat, wrestling kids and rollin’ with the punches. He knows the athlete, he knows how strong Jacob is, the endurance and the attitude he’s got.

I also know the real Jacob. I know what a fighter he is, how bad he has to be the best at everything in life, how hard he works for the things he wants and how much he loves to have a good time.  It’s so hard to see him like this. This…is not Jacob.  He’ll be better, he’ll be back.  I can hardly wait.  …and then I think of Kristi, Connie, Sadie, Kelly, Karen, Rachel, Lizzy, Autumn, Chelsea, Crystal, …geeze, I could fill the page with all of them.  The bond I feel is indescribable and surreal. The connection we have is tragic. 

Am I really here? Is this really my reality? Couldn’t it all still be a dream? Somebody wake me up! I don’t want to be one of this group.  I want to go back to the way things used to be…but I can’t remember what that was now, so I can’t ever go back now. There’s no turning back, we’re in this thing…for life. I’ll never be the same, we’ll never be the same. But, I will still hang on to the hope that someday, Jacob will be his old self, a new self, a stronger self.

One of the mom’s I know recently started a blog for us where we can share events and invite new parents to give them the connections they need to get through this.  A few days ago, Chelsea posted a poem for us:

I belong to a special group of women

My friends and I have an amazing bond.

We never wanted to be in this group,

Yet we are in, for life.

Maybe we have met, maybe we haven’t,

Yet our love for each other is boundless.

We know the pain the other one feels,

And we share our victories small or huge.

Words like chemo, IV, Zofran, bald heads

Are always parts of our conversations,

As well as roidrage, tears, and meltdowns…

We always know where the closest puke bucket is,

We can hold it in one hand and if necessary,

Swallow the sandwich the other hand was holding.

We can drive to the hospital,

Park in the dark parking garage

Make our way thru the halls of the hospital

And to the appropriate floor,

Settle in a room, turn the TV on,

Give instructions to the head nurse,

Silence loud beeping IV pumps,

Direct a wagon AND an IV pole

To the playroom without hitting anything

Make our way back to the correct room

And all this, mind you, With our eyes closed at any given time.

We know how to draw blood from lines

Sticking out of little kids chests.

We can hold them down with one hand ,

While a nasogastric tube is inserted in their little nose,

And be on the phone with their dads at the same time.

We can live for days on hospital food,

And on maybe only one meal a day.

We know the names of up to 20 different drugs,

Their purpose, dosage and time to be taken.

We are always on call, 24 hours a day,

Seven days a week.

We are used to not always looking our best,

Hard to do with only a few hours of sleep.

Make up, hair-styling, skirts are words of the past.

We have become addicted to texting,

hospital, clinic, home, wherever…

We talk sometimes at all hours of the night,

We know we can count on someone to be up.

Then for one of us, the world stops.

She has to walk away, broken.

This job is over.

The job is over, but the fight is on.

Remember, I said we were in this forever.

We are friends, sisters, temporary nurses,

We are each other’s rock, each other’s punching bag,

We listen, we vent, we cry, we laugh together.

We share our lives and our deaths

We share our pain and our victories.

We are strong, but not by choice,

Sometimes we win, sometimes we lose,

But never are we defeated.

We are not nurses

We are not doctors,

We are cancer moms…