Focusing on the climb

I watched Evan Lysacek on the Today Show this morning - skating to "The Climb."
Not the Miley Cyrus version - not sure who it was. But it was one of those times when the words spoke to me - reminded me how important it is to appreciate the climb.
"Ain't about what's waiting on the other side..... It's the climb."

Someone told me once - another cancermom - "don't forget to dance in the rain."

Yep.

Here we go again

yeah, another post when I'm tired. I guess that's just how it is these days...

Today, I'm tired because I can't sleep. I can't sleep because my daughter has been sleeping in my bed the past few days. She has IV fluids at night this week, and she doesn't want to go far in case it starts beeping or something. So she is with me. I love having her near me. And it also exhausts me. I have no time, not even when I sleep, when I can forget a moment that my child has cancer.
And now, I've had an added fear and dread - having her sleep next to me, I listen to her breathe all night. And I panic.

Meg has had trouble breathing the last few weeks. She gets winded very easily. Her heart rate has been up. She's having back pain.

So what does it all mean? It could be that the doxorubicin has damaged her heart. She may have cardiomyopathy or congestive heart failure. Or it could be that her lungs are inflamed from the methotrexate. And scarred.
Or it could be that the lymphoma is back and this time in her pericardia or her pleura - 2 places it likes to pop up.
Shit.
I hate this so much. I'm terrified. I'm overwhelmed. I'm scared as hell.

And I have no one to tell this to. No one but here. No one who can really understand what I'm living. No one can understand how horrific it is to see your child go through this. No one who feels your fear that you could lose her, or the pain that you feel, anticipating all that still lies ahead.

So I don't sleep. I lie awake in fear. I like awake in grief. I lie awake and listen. Yeah, I'm tired.

I seem to come here when I'm tired and angry and sick of it all. I guess that's when I most need to get away from the traditional places I post, the places where my child reads, and vent.
Today, I'm just tired of having a teenager attached to my hip. I mean really, I adore this child. I look at her and I am so grateful that she is here, and I cherish every moment. But she is still a teenager, and all the rude, obnoxious, know-it-all attitude that comes with that.

And I'm tired of worrying. Tonight I'm worrying about her heart, her kidneys, her liver.... never mind worrying about the damn cancer!

I'm so over the edge of being tired - I just don't give a damn about anything outside of my kids right now. It's not a fun way to be.

So how do I get out of this? How do I find joy, embrace and live for each day, blah blah blah.....
Yeah, I believe it, but I also believe that months of stress, lack of sleep, and constant feelings of drowning, can kick the sh+t out of you.

Anger

Today I'm angry. Angry that my child has this disease. Angry that the treatments to save her life may end up killing her anyway, or at least cause her pain and poor health as life progresses.

Yep. They talk about these great survival rates. They run a numbers game. But they don't talk about the fact that these kids have damaged hearts, deteriorating bones, cognitive disabilities. They don't talk about the fact that the drugs damage the heart, the brain, the bones. They don't tell you what you are in for.

I'm angry because there isn't enough done to prevent these effects.
I'm angry because I want to know why we are still using these drugs.
Why the hell don't we have a cure for this damned disease?
Why do I have to watch my child go through awful pain in the name of getting better, knowing all the while that "getting better" will also mean longterm damage.

Yeah, today I am angry.

So how did we get here? Last summer my then 14 year old was strong and healthy. She played softball and field hockey all summer and was probably in the best shape of her life. She started high school. Three days later she came down with flu like symptoms, but her fever was still pretty low. Off we went to the medical clinic - it was labor day weekend and I wanted to get ahead of it so she wouldn't have to wait the 3-day weekend. The took a strep test - negative, and a flu test. They gave her tamiflu while we waited for the results. (it was swine flu season)

By the next week she was really sick. VERY high fever, headaches.... flu test came back negative. Back to her doctor who declared it a virus and sent us home. Fever continued. Back to doctor who gave us antibiotics. Fever continues. Back to doctor who ran blood tests for a bunch of things. Fever continues, tests all negative. Her liver enzymes elevate. We get sent off to the gastroenterologist who proclaims it's a virus and sends us home. The fever finally subsides after 18 days and her liver function returns to normal. She gets back to school but remains tired and without appetite. She's lost weight. Back to doctor - more bloodwork and he declares she has hep A. Tells us it will linger for months. OK - months go by - still tired, no appetite. weight loss. Now complains of trouble swallowing. Back to doctor who sends us back to gastro. Lots more bloodwork - suspects celiac. Nope. bloodwork shows elevated c-reactive protein and sed rate, and mild anemia. Now he thinks autoimmune - crohns. Call the pediatrician again - he assures us it isn't cancer and that it must be crohns. Off for more tests.

She endures upper gi xray series, endoscopy and colonoscopy. The gastro is surprised - no evidence of crohns. But he mentions off-hand, that there looks to be an infected node in her groin. Meg had never said a word.

Call to pediatrician - doesn't want to see her and refers us to surgeon.

Finally, the surgeon takes a look at Meg and says they will help her. Surgery and they'll put her in the hospital until they figure out what's going on. He orders CT scan (finally!)

The day of surgery we learn there are other enlarged nodes showing up on the pelvic CT.

Surgery - he calls in the oncologist.

They biopsy, run a slew a blood tests.... then we get a diagnosis.

Monday morning- ugh!

I am so damned tired. I need to get up and every part of my body is aching. I feel guilty even saying that given what my daughter is feeling. I don't think I've had a good night's sleep in weeks and it is all catching up to me. People tell me I need a break. How on earth do you take a break when your child has cancer? I can't take a day off from work because I am barely hanging on to my job and I've used up all my leave time with clinic visits, hospital stays, etc. I can't even have a drink before bed - I need to stay alert and able to rush to the hospital on a moment's notice.

Here goes....

Ok, there's caringbridge, and facebook... why start a blog? Why not, I guess? I needed a place to write about how it affects me - the mom, to cope with a child with cancer.

This is the place where I can come and post what I wouldn't put anywhere else. 
My daughter Meg was diagnosed in April, 2010 with Anaplastic Large Cell Lymphoma. A big word to say that she has cancer. Advanced, aggressive cancer. I refuse to capitalize it. I know some people call it the big c... but I can't ever give it that much reverence by capitalizing it.