Sunday, December 08, 2013
Posted by Abbi Perets at 11:41 AM
Tuesday, December 03, 2013
I keep telling Guy that if I come out "religious" on the other side of this, that will be a major accomplishment. I recently said the same thing to another religious father on the oncology ward. His daughter has been hospitalized for four and a half months. They have one other daughter, and she is currently living with her grandparents.
"I feel the same way," he said. We talked about our anger. He mentioned that a friend of his told him, "If you're angry, then you do believe, because you believe there's someone to be angry at." We agreed that there's something to that, but we also agreed that we're having a lot of trouble reconciling belief in God with what is happening to our children.
I also understand that there's something very childish about saying, "I believe in God, but only if he does what I want." Like, if my kid gets better, that's cool, and then I can go on believing. But if -- the unspeakable if -- then, I'm pretty sure my belief will shrivel up inside me, a rotted, ugly thing I will shove down and never take out to look at. And I recognize that I'm basically the equivalent of a teenager who says she will only love her parents if they buy her the latest iPhone, but I DON'T CARE. Because my kid has been through enough. *I* have been through enough.
But that's the other thing. Luck doesn't seem to care. We think, because of the way our brains our wired to look for patterns where there are none, that running into bad luck in one area will somehow protect us from other bad luck. You don't think, for example, that your mother will be diagnosed with breast cancer a week and a half after your kid is diagnosed with leukemia. When one of your kids has special needs, there's a part of you that thinks your other kids are somehow protected -- nothing bad can happen to them, right? But that's WRONG. Just because your kid is already in the hospital with leukemia doesn't mean he won't go into septic shock and almost die. Just because he pulls through that doesn't mean some new, fresh hell isn't waiting around the corner, waiting for that one instant when you let your guard down for an instant.
I have always been jealous of my husband's faith, because it is so natural for him. He doesn't have to think about it. He just believes. He just lives. I've written about this before, but I'm still jealous. I can't find that kind of grace, that kind of peace. I just can't.
Posted by Abbi Perets at 5:29 AM
Tuesday, November 26, 2013
I can try to tell you how much fun I had today on the outpatient ward and afterwards with Adi, but it probably won't make sense.
We got to the hospital early, and Tuesdays are really slow on the outpatient ward, so we got ourselves settled in a chair and Adi started up his iPad. I wandered out to check on where a nurse might be, and I saw one of our favorite inpatient ward nurses, Hadas. "You come all the way down here and don't say hi?" I demanded, and as she protested that she had JUST WALKED IN THREE SECONDS AGO, another mother replied with a grin, "Hey, there are VIPs here," and gestured to her own son. And just then two other families we've grown close with came in, and there were hugs and kisses all around, and then one of the nurses was all, "Adi's Mommy, we want to start his chemo and we need you to verify Adi's ID number, and I was like, "Dude. I am SOCIALIZING here."
So we got Adi hooked up to his chemo and Hadas came in to give him a hug, and the other families came in for their own treatments, and one of the kids is currently on steroids and CANNOT STOP EATING and he was describing everything he was eating at the moment, and everything he was going to eat later, and everything he ate earlier, and it was really, really funny. And his dad is always funny, and he was doing routines, narrating everything that was happening in the treatment room, and I guess you really had to be there, but it really was funny.
At one point, one of the nurses came in, and this dad had her model the latest in nursing uniforms, pointing out how her shoelaces coordinated with the strap for her name tag -- again, you really had to be there, but trust me, if you had been there, you would have been laughing. I laughed a lot, and so did everyone in the room, and I mean great GALES of laughter, like people who are NOT thinking about cancer. It was awesome.
We finished super early and everyone clapped and sang for Adi as he was unhooked and we left, and we went to meet Shirlee for lunch, except that the closer we got to the restaurant, the more strongly Adi protested that he wanted to go home, so we pulled into the parking lot and Shirlee took one look at Adi and said, "Let's go to my house and eat there," and he was down with that plan, so that's what we did, and I remembered how grateful I am to have such good friends, who love my son as much as I do and who GET IT.
And Adi decided he wanted to sleep at Shirlee's house, so that's what he's doing now -- after he spent the whole afternoon there -- and he made cookies with Shirlee (well, he was in the house while Shirlee made cookies), and he's just so HAPPY to be there, even if he's exhausted.
So it was a good day, and we need good days.
Posted by Abbi Perets at 12:58 PM
Thursday, November 21, 2013
Here's a sad truth: When one of your kids has cancer, the rest of your kids are pretty much going to get the short end of the stick. Sure, you could argue that the other kids DON'T HAVE CANCER, and really, is the long end of the stick any better? But boy, howdy, are we ever aware of how we are failing our other children. (By "we," I mean "me" and "every other mom I've talked to on the oncology ward" and "a lot of the dads on the oncology ward." I don't think that Guy feels he's failing anyone. Bless.)
But anyway. My other kids. Oy, oy, oy. Yoni, as always, is just left to fend for himself and get by. You would think that checking his backpack would be something I could handle on a regular basis, but it is Just. Too. Much. I see the backpack, and I know the mess that is inside, and I just cannot make myself do it.
Just now, literally, just now as I typed this, Adi called out from his room, "Mommy? Can I come to your bed?" And I said, "Of course, honey. Do you need help?" And then I went and helped him to my bed, walking past Yoni twice to do so, and Yoni doesn't even ASK to come sleep in my bed, because he knows what the answer will be.
Amit -- thankfully, Amit is young, and hasn't yet figured out how we are snubbing him left and right these days. He is delicious, and I love to hug and kiss him, but whereas once 97% of the photos I posted on Facebook were of Amit -- well, bald heads rule my page these days.
The Girls. Oh, The Girls. I feel that I am failing each of them in different ways, but there is so much stress and so much laundry and So! Many! Dishes! and I am so freaking tired and I suspect they have kind of given up on expecting anything from me, which is... not so good.
Tired. This is another thing. You would think that I was the one getting chemo. I can crawl into bed at 5:30 in the afternoon with Adi, and if I can get away with it, I just won't get up again until the morning. I am exhausted all the time, no matter how much I sleep. And so much of the day feels like I am underwater. What is that? WHY is that? WHEN WILL IT STOP?
Guy does not seem to have this issue at all, and he thinks I am bizzaro for wanting to sleep so much. I think that my body's response to stress is simply to go into hibernation in the hopes that I can just... sleep through the stressful period? Is that a thing? I have no idea. But this post is supposed to be about The Children and How Neglected They Are.
My friend Shirlee tells me that when her brother had cancer as a teenager, she was neglected and she hated her parents so much -- right up until the moment her first daughter was born. I would prefer to have my children forgive me sooner, or not hate me at all, but I don't know quite how to do things any differently.
Self-awareness sometimes sucks.
Posted by Abbi Perets at 1:00 PM
Wednesday, November 20, 2013
A few nights ago, some of my friends organized a group of about a dozen 13-year-old boys who want to spend time with Adi on Friday mornings. The group came over to meet Adi, to hear about his special needs and leukemia, to ask questions, and so on. We introduced them to Adi and talked a little bit about Sotos syndrome, and then about how our lives have changed since Adi's leukemia diagnosis. We explained that Adi's treatment is intense -- currently, he's in the hospital for chemo at least four days a week, for example. We explained that even when he is at home, he needs constant care -- that he is sometimes to weak to walk unassisted, to get to the bathroom, and so on. And then the boys started asking questions.
"If you have to take care of Adi all the time, how do you go to work?" one asked.
"That's a great question," I said. "I stopped working so that I can take care of Adi."
Another boy raised his hand. "So, how do you guys manage financially?"
As my friend searched frantically for a hole in my floor into which she could climb, Guy and I laughed and told the boys that it's not always easy, but we manage.
Up until two months ago, I contributed a significant amount of income to our household. Today, I contribute NO income. So, in a sense, you could say that the cost of cancer starts with what I earn in a year -- but the thing is that it certainly doesn't end there.
Before leukemia, I hardly ever used my cellphone to actually talk to people, so I had this cheapo plan, but now my phone rings ALL THE TIME, and I have to actually interact with people, so we got this SUPER CRAZY HIGH BILL and then we switched cell phone companies, but that was AFTER we paid about 4 times as much as we normally do.
And then there's the stuff we buy at the hospital. A quick visit turns into 11 hours, and Adi asks for Cheetos, so I go buy some, and even with the oncology discount (10%, baby!), the Cheetos still cost like $87 or something. Plus coffee. And sometimes sandwiches, and iced tea for Adi, and a toy at the gift shop, and bottles of iced tea at the grocery store for our house and extra junk food because maybe Adi will eat it, and treats for the other kids, because if we don't have time to be with them, we can at least buy them stuff!, and delivery from the burger place because when your kid with cancer asks for a burger after not eating for a month, you BUY THE BURGERS, and the yogurts that cost FOUR TIMES AS MUCH as the other yogurts, because OF COURSE that is the brand he likes and will actually eat.
I would estimate that in a given week, we spend about $50-$75 on stuff at the hospital. (My friend Mara just passed out.) At least we don't have to pay for parking anymore, now that we have our handicapped parking pass!
Oh, and I guess the gas we use to get to the hospital is an expense, too. And this is Israel, where gas is, like $452/gallon. (I may be slightly underestimating.)
And, as I recently lamented on Facebook, soon I will have to give up my beloved hair extensions -- because yes, I am THAT VAIN, and I started wearing hair extensions about a year and a half ago so that I could have long, thick hair, and I have loved every second of it. The thing is, those extensions are SUPER EXPENSIVE, and I apparently blogging about your kid with leukemia is NOT a highly lucrative profession, so I guess you can add my extensions to the cost of cancer.
Fortunately, the treatment itself is mostly covered. We pay exactly NOTHING for our extended hospital stays, our outpatient treatment, and so on. We pay very little for the drugs Adi takes at home. Also, we have not had to purchase meat in forever because our neighbors keep cooking for us. So maybe it all evens out? Except for the part where I no longer earn any money.
Already, several people have tried to give our family money in various ways, which is lovely, but no. I was in the grocery store one day when a woman came up to me and said in a stage whisper, "Are you... okay for money?" And I looked around to be sure she was talking to me, and I said, "Um, yes?"
She gestured to my cart. "Can you pay for that?" I said that I could.
"Because, if we wanted to take up a collection for you, would you accept that?"
"Because we can, you know."
And really, it's a lovely gesture, but I really do feel like the things we cannot afford right now (HAIR EXTENSIONS) are not things that I feel comfortable letting other people pay for.
So, in a sense, I guess the other cost of cancer is my pride. Because I am really not used to people asking if I can afford to pay for my groceries while I am buying them.
Posted by Abbi Perets at 7:34 AM
Monday, November 18, 2013
The problem with being part of a community means that the community's problems -- and pains -- become yours.
For years, I've been part of the greater special needs blogging community, but for the most part, the blogs I read deal with kids who are like Adi in that they are generally healthy. That's something I've always been grateful for, of course. And it's not that I think (or, heaven forbid, SAY to someone), I COULD NEVER DO THAT, because, duh, if that's what happens, then you suck it up and get the job done because no one gives you another alternative. I've just always been glad that we didn't have that additional burden. No oxygen tanks, no daily syringes to prepare, and so on.
Ha. Ha. Ha. Ha. Ha.
OK, so now that we are firmly ensconced in the world of MEDICAL ISSUES and ILLNESS, there are different blogs to read, different stories to hear. And these stories are hard to hear. They are hard to live, in a way that special needs (or at least our experience with special needs) is not. I mean, please, don't get me wrong, special needs sucks, yo, but leukemia is a WHOLE NEW LEVEL of suckage.
When I read about Superman Sam, I could feel something breaking inside me.
"So why do you read blogs like that?" people asked me, as I told the story.
"Because I have to," I said, but they don't get it. I can see that they don't get it, that they think I should just keep my head down and focus on my son, but that's not the way this world works.
Yesterday, we went in to the hospital for what I knew would be a long day. We were there at 8am and had blood drawn a few minutes later. It took a full four hours to get the lab results back, and another three hours for the blood to arrive from the blood bank (WHICH IS NEXT DOOR), and another HOUR after that for the doctor to sign off on the day's chemo, so we were at the hospital for ELEVEN HOURS yesterday.
After many, many hours of waiting, Adi was given one of the THREE beds currently available to patients on the makeshift outpatient ward. Some time later, we were joined by another family, a beautiful 2-year-old and his parents. We've seen each other around the ward, and we've exchanged pleasantries, but yesterday was the first time that I really spoke with both parents.
After EIGHT YEARS of infertility treatments, they finally managed to have their son. And now he has leukemia. And his mom and I just sat and talked and cried, because WHAT THE HELL, UNIVERSE? WHAT THE HELL?
As much as the doctors tell us not to compare stories with other parents on the ward, as much as they tell us not to google side effects and symptoms, not to read the full protocol, not to compare our kids to the case we read about in the obscure journal -- we do. We HAVE to. We can't sit idly, watching, not thinking, not feeling, not engaging for the months and months of treatment. We seek each other out. We compare notes. We share tips. We get advice.
And we share each other's pain, because we are the only ones who understand. We are the only ones who know how hard it is, to carry around this fear, to calculate and recalculate our odds, to wonder if lightning strikes the same place twice, or more, or if we will be lucky enough to find a tiny shelter where we can wait out the storm.
It hurts so much to share the pain of other parents. But I think it would hurt even more if we tried to do this alone.
Posted by Abbi Perets at 2:29 AM
Thursday, November 14, 2013
So much of our mood is determined by how Adi is doing, but even when Adi is having a good day, there is a world beyond these four walls.
This morning, before I even got out of bed, I saw a post that made it hard for me to get enough air into my lungs. I skimmed it, because I didn't want to read it too closely, but of course that only worked for a moment. I read it, and I read it again, and I could feel how my breath was shallow and how my heart ached. I could hear Adi in his room, calling for me, and I got up and went to him and pushed the pain down, to a place where I could return to it later.
Adi asked for breakfast, which isn't something we take for granted these days. He took his Zofran and asked for a hamburger. It was about 7am, so we told him that there were no available burgers at the moment. He was disappointed, but settled for several other options, including a sandwich, some oatmeal, and a few other items that I can't remember. He drank some water. We were pleased.
Around nine in the morning, we took him out for a walk in his wheelchair. The sun was shining, the air was crisp, and it was amazing. Adi waved at people as we passed them -- something else we no longer take for granted. There are so many days when he is withdrawn, reluctant to engage with the world.
Posted by Abbi Perets at 9:02 AM