September 23, 2011: Blah
by Georgia
Updates have been slim this week since I have been feeling a bit “blah.” I am happy to report that Elsa is doing well, though. In good spirits, running around, tormenting the dog. The usual.
When we walked into the hospital this past Monday for our weekly clinic visit, my heart sank. I just wanted to scream, “I’m done now! Enough!” During our first week in the hospital, our Leukemia 101 professors kept reminding us that leukemia treatment is a marathon and not a sprint. I think that, for the first time, I’m really starting to feel the weight of that statement. I’m at mile 2 and already my muscles are burning.
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Took a break. Went grocery shopping. I’d like to be able to say that I’m feeling renewed, but I think I’m feeling worse.
I’m not sure why I did this, but I googled “Leukemia blog.” Why google? Why do I do this to myself? The first two that I clicked on were both written by or about people who have died. The second one was actually about a girl diagnosed at age 22 months and then in remission for 7 years. Mysteriously, she relapsed at age 11. Died. In a lot of her pictures, her head is laying on the same Ikea pillowcase that J and I have on our bed. Were I in a better mood, I would put my blinders on and continue with my day, repeatedly telling myself, “She’ll be fine. She’ll be fine.” Instead, I just feel awful, like that pillowcase was a terrible omen. Today, Elsa feels like a ticking time bomb, wrapped in this happy, smiling, toddler costume.
Children die from this. They spend time in the ICU, hooked up to machines and tubes. I just can’t. Can’t. Can’t. Think about that for Elsa. I can’t. I honestly haven’t felt like this since early in her treatment. Hopeless and afraid and unable to push these awful thoughts out of my head.
I know this will pass. These feelings.
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Took another break. 24 hours passed. Time spent. Feeling honestly better today. Still sad, but now allowing myself to pursue any more google searches. I’m heading to Philadelphia for the night – for a close friend’s secret wedding reception. I didn’t think I would be able to go, but I’m forcing myself – I would regret staying home. There couldn’t be a better time for me to leave, really. She is tolerating consolidation so well. All of her side effects from the Day 1 dose of vincristine (pain, change in taste resulting in no appetite, constipation) have passed. She is sleeping through the night for the time being.
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More hours have passed. This is what it is like trying to write a blog post with a 19 month old in the house. On my way to Philly. Nervous, but excited to be fancy free for approximately 22 hours. Putting away whatever dark feelings I have. Telling myself that all will be well while I’m away.
Enjoy the wedding. Wear something sexy. Drink some wine. Enjoy being your girl friend’s friend. Elsa will be happier because you went and had a great time. Isn’t that normal and healthy? Don’t read any more blogs. Elsa is Elsa, not anyone else. Her journey will be her own. Godbless.
Thanks for leaving such kind words Lennie. The wedding was wonderful and worth it. Elsa was, of course, just fine while I was away and continues to do well.
I’m sorry you’ve been feeling so bad – but of course if you didn’t even sometimes, you’d be in denial. Up and down. Here for you. Treasure every smile, hug, and giggle.
You, who is amazing enough to give all of us pep talks, needs and deserves a pep talk herself. So here goes- I am not a runner. Wish I was, but I have to admit I really don’t like running. The times that I have, (usually because I need to lose weight), I have noticed it going a certain way. I dread it from the get go and I start to get tired shortly thereafter. There comes a point where my lack of conditioning takes hold and it feels excruciating. I feel I absolutely must stop or I will pass out or puke. -And then I ask myself; “Am stronger than this moment?” I hesitate, I admit, but the answer is always, even if reluctantly, “yes I am.” I know, from my past experiences, that I am stronger than a lot of moments, that I never thought I would have been. That is the amazing thing about this human classroom that our souls are in.
I admit, I cannot think of a marathon more excruciating than yours. Pace yourself Georgia. Since you are feeling blah, let’s together, dismantle the bad stuff. The IKEA pillowcase. There is a ying and a yang to every “pillowcase”. What will happen with Elsa will be the opposite of that other story. Next, people do die from this, but LOTS of people live through it too. Maybe powerful, grown up, healthy Elsa is destined to be a pediatric oncologist one day. I have a client whose baby boy had a very rare form of brain tumor. So rare, docs were vying for the chance to treat him. His parents quit their jobs, handed over custody of their other child to grandparents, and moved in to John Hopkins. That baby boy with the brain tumor is now a healthy, happy teenager driving his family crazy. His survival chance was 30%. He beat those odds, and so will Elsa. For every bad story, there are at least 2 good ones. That’s the way God works, I am sure of it.
Make posters, wishes on paper and set them free to come to fruition. See nothing but her grown and cancer free and shining. Her powerful, beautiful self-
Kick up your heels tonight. Take care of you, for you are her most powerful example of what she should invest in, as well as what resiliency looks like. You and Daddy are her very most favorite people in the whole world, and as little as she is, do not let her size fool you. She NEEDS to see the two of you are okay. She cares more for you than this damn cancer. Ask yourself, “Am I stronger than this moment?”, and then dance, as if Elsa is watching-
Thank you for the pep talk Audrey! I am happily, feeling much better now. I honestly thought of your comment quite a few times while I was at the wedding about how I should dance as if Elsa is watching. I loved that.
One of my favorite expressions is “If your aunt had balls, she’d be your uncle.” it makes a joke out of all the “if” possibilities. Yes, this cancer could recur. But right now, it’s in remission. So deal with now. If Elsa gets a 7 year remission, believe me, the whole medica world will be different then, so what you worry about now probably won’t even be a possibility then. I’m glad you’re going to the wedding. I honestly believe that the best way to withstand the long journey you are traveling is to find pit stops along the way where you gather refreshment for your spirits.
You will have days when you are overwhelmingly sad; be kind to yourself. Perhaps write long essays that get it out of your system. (I still have one that begins, “I’m tired of coping.” It ends with me thinking I need a vacation from myself and my own feelings. Today, I feel such compassion for that weary person.) Find activities that never fail to refresh–for me, these have included yoga, music therapy, visiting art museums, or a leisurely minute walk in a spot of natural beauty. On days when I’m overwhelmed, I make sure to do one of them. At least you get a brief break from sadness and fatigue. And don’t forget to give yourself an imaginary pat on the shoulder and hear the soothing sounds of someone saying, “Awww, poor kiddo. It’s hard, isn’t it?” Then go watch some wacky comedy or go feed geese or something.
Thanks Liz – I love when you stop by. I’m still looking for some calming activities to help center myself that don’t include chicken wings
Going to the wedding was wonderful – totally 100% worth it.
when maxine was born, my mom told me that any time i wanted to google something i should just call her and she’d do it for me. and she did.
and now, georgia, i extend the same offer to you. do you want to find other parents out there pushing the brush and scratchy limbs out of their eyes as they find their footing on this path? because if you do, i will find them for you, and thank the other parents with other stories while gently setting them aside because their journey is not yours.
and i heartily second everything that everyone else said.
and also, you’re awesome.
I’ve been informed that I am no longer allowed to google anything about leukemia. Sooooo, it looks like you might be my new googler! And thank you for being my original blog friend – I think somewhere in the back of my head, I’m always thinking, “Rachel will read this! I can’t wait to read what she writes next.” (P.S. Do you get this reply to your comment in your email? I can’t tell!)
i don’t get a comment reply email, just a new post email.
let me be your googler! i’m on it. as soon as i compile a good couple of blogs, i’ll email you.
i’m so glad we’re blog friends. i feel exactly the same way about you and my blog
it’s really, really, really nice.
Ugg, such normal feelings in your position. I wish I could take them out of your head and hide them away. I’ll definitely buy you a new pillowcase.
Megan. Do you get my comment reply in your inbox? I can’t figure out if people do or not. P.s. I love you!
It is so tough. You are constantly in my prayers. Hope you had a wonderful time at the wedding. Sometimes the best medicine is to escape, even for a few minutes, and allow ourselves some “ME” time. Please be good to yourself and take care.
Testing. Testing.
Test again. Test again.
Love you guys so much elsa looks good she is such a happy girl!
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