Sunday, November 10, 2013

I just keep losing the beat

I can't seem to find my rhythm. Perhaps that's because there is no rhythm to our days right now. If Adi is having a good day, then I'm having a good day, and everything is okay. And if Adi is having a bad day, then you should probably just stay the hell out of my way, because any conversation we have is going to end with me either hanging up on you or bursting into tears.

Last week was -- and this will shock exactly no one who has gone through the horror that is childhood cancer -- full of ups and downs. We are into what we call here in Israel the "Cytosarim." You know, I'd link to the Wikipedia page, but trust me, you don't really want to read about the potential side effects and whatever. Anyway. This is actually supposed to be a fairly "easy" part of the treatment. Adi has chemo four days in a row, and then, theoretically, a 3-day break. This is all outpatient, and sure, there are a couple of intrathecals in there, but what's a little general anesthesia between friends, really?

(We have become SO CAVALIER about general anesthesia. WHO THE HELL ARE WE? I don't even RECOGNIZE us.)

Anyway. So last week, Guy took Adi in on Sunday, but he couldn't have his chemo because he seemed to have a UTI, so instead he got fluids and antibiotics. And then Monday was supposed to be his intrathecal, but he hadn't started chemo, and his umbilical infection seemed to be acting up, so he got more fluids and more antibiotics, and no chemo. And then on Tuesday he still didn't have chemo, but he got a referral for a stomach ultrasound, and more fluids and more antibiotics AND two units of blood because his hemoglobin was super low, and then on WEDNESDAY, he finally had chemo, and on Thursday he had his intrathecal and more chemo, and that meant we had to come in on Friday and again on Saturday night for chemo, so that was kind of exhausting. So, in the end we had seven days of outpatient treatment and ONE day of rest, today. Which is kind of like four days on/three days off, except not at all.

Meanwhile, back at the ranch, we also have these other children. And there were fights and tears and yelling and punishments and consequences and disaster and stress, which is always fun. I can't even write about it, because there's so much emotion and stress and everyone is right and wrong all at the same time, and it's just too much, so my coping mechanism is to just ignore it all and walk away.

Also, last week, there was vomiting. So much vomiting. SO. MUCH. VOMITING. OH MY GOD, THE VOMIT. Again, I understand that this is part of chemotherapy. BUT OH MY GOD.

First of all, it is horrific. Your kid is vomiting PROFUSELY, and there is NOTHING you can do. Also, you are split between thinking, IT TOOK ME SIX HOURS TO CONVINCE YOU TO EAT THAT BOWL OF SOUP AND YOU JUST VOMITED IT UP IN SIX SECONDS, and also, OH MY GOD, YOUR VOMIT REEKS AND NOW I HAVE TO CLEAN IT UP. And I love my son, I really do, but I really HATE cleaning up vomit.

Also, my kid has really loose bowels these days, so there was an especially great moment when he pooped all over himself -- that is, his body, his underwear, his pants, and his SOCKS -- AND the floor of the bathroom at the hospital, and I had to figure out how to get him cleaned up without disconnecting him from the pole connected to his port dripping chemo -- which, remember people, is POISON -- so as not to endanger anyone. Oh, it was horrible.

But the pictures I put on Facebook are the ones like this:


I don't snap photos of my kid when he is vomiting or worse. I don't take out my camera on the days when he is too exhausted to smile for me. So in a sense, I suppose I'm perpetuating the myth that childhood cancer is all about happy bald children.

Please, trust me. It's not. Childhood cancer is a terrifying, horrible thing. It is an ugly monster that destroys whole families. It is the most frightening thing I have ever been through -- and I once watched my child turn blue in the NICU.

I am scared almost all the time. I carry this fear around inside me, coiled up, ready to burst at any given moment. On a bad day -- that is, when Adi has a bad day -- I think I will actually explode from terror and grief. And on a good day, I can push that choking sensation down for long enough to perhaps appear normal to the world outside. Which is misleading, because then my other children rightfully assume that they can have some claim to me. That they can have a piece of what belongs to them. But I am so, so drained and empty and unable to give them the attention and love that they deserve, and we go back into the disgusting cycle of dysfunction.

I can sometimes put up a pretty good facade, but I'm losing the beat. I can't even hear the music most of the time.




11 comments:

Mara said...

Abbi. I love you. Your gift with words is a gift to the world right now. Childhood cancer sucks beyond anything I can conjure up in mere words, and yet, you managed, in this oh so POWERFUL post, to give the rest of us an insight into the hell that is your family's life right now.

I'm sorry are such small words. But I am so so sorry.

Abbi Perets said...

Thanks, Mara. We love you & miss you.

Shoshana said...

Keeping your family in my thoughts and prayers. What is Adi's hebrew name?

Sharon said...

Mara told us about what you and your family (especially Adi) are going through and how powerfully you are able to express the experience in words....and she was right. I send you long distance hugs from NY. If you are comfortable posting Adi's Hebrew name along with yours, I will add him to my misheberach list. Take care of yourself as bets you can and whenever you can, that is important too!

Crystal T. said...

I'm so sorry, lady. I've been there (am still there more often than is humane) and it sucks. It's horrifying to go through this. And it's hard to talk about it with people because you see the horror in other people's eyes fresh and new all over again even though you think you're used to it.

Sending you strength and peace.

Anonymous said...

Wishing you and your family strength and patience and a refuah shelaimah min hashomayim.
One day at a time, doing the best you can do, is all you are meant to do, so don't be hard on yourself and know that you are superwoman, an amazing being dealing with hell on earth, and you are doing it with a loving heart and kindness. Big Hugs from a Stranger. Xo

Benji Hain said...

Abbi,

Meeting you last week, and now reading your blog, has given Fara and me so much insight into what parents of children with cancer go through day-to-day. You have a real gift for writing, but more importantly you've been given a treasure in Adi, who's just about the sweetest kid I've ever met.

Hoping for good news ahead, and a full recovery for Adi.

Abbi Perets said...

Shoshana & Sharon, עדי נתנאל יחיאל בן אביגיל.
Thanks. :-)

Abbi Perets said...

Crystal -- thanks so much. Glad we found each other.

Abbi Perets said...

Anon -- thanks for the kind words.

Abbi Perets said...

Benji -- the one bright spot in this journey is the amazing people we are meeting along the way. Thank you for your kind words, and I'm glad we got to meet you and Fara, and I'm looking forward to going out to dinner sometime soon!