Friday, October 03, 2014

Cancerversary

The “secular” anniversary was a few weeks ago, but today, Erev Yom Kippur, is our Hebrew Cancerversary. A year ago, we started this insane chapter, this chapter that refuses to end.

So here we are, a year later. And everything has changed, but nothing is different. This is a recurring theme in our lives. Adi is still Adi, but there is so much to who he is, so much that makes Adi Adi….

Adi has matured so much this year. Every day, people come into his room and examine him and touch him and ask him questions and poke him and listen to him breathe. He has to move carefully so he doesn’t pull out his various lines. He had to get used to his bald head, and then rediscover his hair and eyebrows and eyelashes -- and then lose them again. He has to go for x-rays and CTs and intrathecals on days when he just wants to sleep. He has to fast, to drink contrast dye, to eat specific foods and avoid others. HE HAS A STOMA. He can’t just take a shower; he first has to have his PICC-line wrapped in cling-wrap, his stoma bag emptied. His body doesn’t do what he wants it to do, what he expects it to do. And he adjusts. And only very rarely does he cry, “It isn’t fair!”

I can’t say that I have matured. I’m still angry and bitter. Still resentful that the world continues to turn while my child is sick. Still annoyed that the fact that I no longer work means there is less money for things I want.

But I have learned some things this year. I do a pretty good differential diagnosis -- if the patient is Adi. I am really good at insisting my kid be admitted (or kept in the hospital) if I don’t think he’s healthy enough to go home. I can administer Neupogen injections. I can change a stoma base and bag -- even without gloves in a pinch. I can clean copious amounts of vomit. I can get my kid completely changed -- including his base and bag, and all the sheets on his bed -- in 26 minutes. (Dude, he’s heavy.)

I have not learned to be more patient with the world. I have not learned to hold light and love in my heart for crappy drivers, people who stare, people in front of me at the grocery store, nurses who access ports too slowly, nurses who are too busy to change bandages, technicians who do not drop everything to x-ray my child, and pretty much everyone everywhere who does not do exactly what I want at the moment I want it.

In many ways, I am still a teenager.

In many ways, my kid is the grownup.

Friday, September 05, 2014

Decisions have been made.

The Chief Surgeon saw me the other day and said, “You need to do the chemo now, you know.” I was surprised, because that wasn’t the message I’d gotten from him just a few days earlier. “The stoma, that’s about quality of life,” he said. “But the chemo, that’s about the CORE of life.”

Three other surgeons told me the same thing yesterday, over the course of the morning. One of them grabbed my arm. “You need to agree to the chemo,” he said.

“Well I was never planning to refuse--” I started to say.

“You need to agree to the chemo now, because otherwise he’ll die,” said the surgeon, which was a little blunt, if not inaccurate.

“So, the surgeons seems to think we need to have chemo,” I said to Guy. And that’s when Guy told me that he told our oncologist that “they” -- the collective doctors of the hospital -- had destroyed our faith in the system what with everyone presenting a different opinion and seeming to have no sense of the big picture. Apparently, after that happened, the oncology team sat the surgical team down and gave them a lecture on NO CHEMO = DEATH.

So. We are restarting chemotherapy on Sunday, with a little cytoxan followed by several days of cytosars.

In the meantime, the inverted stoma continues to make us miserable. We’re tired (none of us is sleeping well) and cranky, the stoma leaks constantly and requires round-the-clock care, and it makes for a lot of laundry. Adi is stuck lying down on the couch with chux pads spread beneath him to catch any leaks. He’s not thrilled about this, and spends most of his deay demanding that we bring him things. We, of course, handle this by picking fights with each other, because loss of control + fear + lack of sleep = marital bliss, of course. Another side effect no one tells you about….



Wednesday, September 03, 2014

No One Knows


The problem is that no one knows for sure.

I suppose I should clarify a little, so I’ll try. Way back on July 27, Adi restarted chemo after a 6-week break. He got two doses of vincristine/doxurubicin (poison and more poison), and started his every other day erwinia asparginase (yet another posion). Within a week, we had been admitted with a possible bowel obstruction, and a few days after that, we were in the ICU with sepsis and heading for surgery. Adi came out of that surgery and just a few days later we headed back to the surgical ward.

The surgeons and the oncologists conferred, and it was decided that Adi would recover from surgery, finish his course of chemo (about 2 weeks), and then during his next 6-week interim maintenance phase, he would have surgery to reconnect his intestines (reanastomosis). And then he would finish his last round of chemo.

But then a week -- seven days -- after the first surgery (which was actually the third abdominal surgery, but let’s not split hairs), Adi spiked a fever and was in terrible pain. YET ANOTHER OBSTRUCTION.

The surgeons and the oncologists conferred, and it was decided that right then, they would open Adi, reverse the stoma, and when he recovered, we’d move forward with chemo and all would be well.

Except that the head of the surgical department came out in the middle of the surgery to tell us that what they wanted to do would not be possible because Adi had suffered YET ANOTHER PERFORATION, his abdomen was again FULL of fecal matter, and his bowel was in terrible shape. They could not possibly reconnect at this point. In fact, his existing stoma needed to be resected, and they would make a new stoma.

Several hours later, Adi was in the ICU, intubated and sedated, and we examined his new stoma, which was busily expelling everything that had been trapped in the bowel.

The new stoma is inverted. I cannot explain to you in words how frustrating it is. We cannot attach a bag properly, so Adi is essentially constantly covered in leaking poop. Let’s remember that Adi is almost 11, and eats basically normal food, so we are not talking about sweet baby poop. We are cleaning him and changing dressings ALL DAY. We are going through copious amounts of supplies. Adi’s skin has severe burns from, you know, poop. And the oncologists are CHOMPING AT THE BIT to give him chemo.

The problem is that no one knows for sure how Adi will respond to chemo. Will there be another bowel obstruction? Another perforation? Will we wind up in surgery again, after chemo has brought down his counts?

Or what if we wait? What if we give Adi the month or two that he needs to heal, then close his stoma, and then finish chemo? Would that work? No one can say for sure. So we don’t know what to do. And that’s a terrifying feeling.

When Adi was younger, I agonized over school choices, over what therapies to pursue, and at what cost. Quality of life. But now we’re talking about his actual life. The wrong choice here could be deadly. We could spend the rest of our lives second guessing ourselves. I’m exhausted by all of it. And terrified. Because the problem is that no one knows for sure.

Wednesday, August 13, 2014

Grief

Today I watched another family watch their baby die. 


It was as awful as it sounds. 

It was raw, wrenching grief. Even the nurses cried.

We knew these parents a little bit. We spent a shabbat with them on the oncology ward, and when we got to the ICU yesterday, there they were, in the room next to ours. 

"How are you?" I asked the mother yesterday morning, and she shrugged her shoulders. 

"Could be better. You?

"Could be better," I said, and we smiled that half-smile that doesn't indicate anything resembling happiness.

On the oncology ward, there are doors to close, a modicum of privacy. In the ICU, their grief was splayed out for everyone to see and hear. 

It's not something that you can put behind you and walk away from, at least not very easily. I have a feeling that I will hear her anguished cries for a long time to come. 

...

When I arrived in the morning, Guy told me that the night hadn't been great. Adi was vomiting, he was in pain. The surgeons conferred, and quickly decided that there was no option but to operate. 

"But what about the fact that he's neutropenic?"

"We'll have to deal with that."

Before he could go into surgery, Adi needed platelets, and by the time he went in, his neutrophils were up to 500, which is still not great, but it's better than 200. So that's something.

Once again, his bowel was all twisted up, and they untwisted it and closed him back up, and now we have to hope and pray that he can recover from this surgery and that this, indeed, was the cause of the septic shock, and that we have effectively treated the primary issue.

Cultures have also revealed a gram-positive bacteria in his blood; by tomorrow they hope to be able to narrow his antibiotics to treat it effectively. 

...

The room next door has been cleaned thoroughly. The curtain between our rooms, closed all day, is now half-open. The monitor is dark. It hurts to see. It hurts to think. It hurts to cry. It hurts. 

Sunday, July 27, 2014

Another day, another drive, another explosion

This morning, I set out with Adi for Schneider. Again.

This time, though, I was more prepared.

“Adi, if we hear a siren, what do we do?”

“We get out of the car.”

“And?”

“Lie down on the ground.”

“Right.”

We drove. According to Waze, my regular route was backed up, so I got off at an earlier exit and took surface streets. And then, just a few minutes from the hospital, just like last time, the sirens started up.

I got Adi out quickly -- or as quickly as possible with Adi -- and got him onto the sidewalk. It’s very, very hard for Adi to get down to the ground, but he did it, and then I shielded as much of him as I could with my body.

The boom was very close, and very loud -- it turns out that a rocket fell in an open area in Petach Tikva. Adi told me how brave he was, and I agreed. And then I helped him get back up, and we got back in the car and drove the rest of the way.

I wonder when I’ll be able to drive without waiting for the sirens. I wonder when I’ll stop feeling so tense all the time.

Saturday, July 26, 2014

Friday Night Explosions

Friday night. Shul had just ended, and we were all outside. Kids were running around, circling around their parents, running ahead, shouting to their friends. People stopped to chat, walked a few steps, stopped again. Guy and I were with Adi, Amit was somewhere ahead. Yoni was out of sight -- not at all unusual.

And then -- the siren. For an instant, everyone froze. And then -- panic, immediately followed by doing what we’ve been taught. Guy grabbed Adi and propelled him across the street. “We have 90 seconds, people,” he shouted. “No need to panic.”

Amit was suddenly there with us, and we moved with a group of people towards the closest house.

One woman, Yoni’s friend’s mother, was crouched with her two youngest children, covering their heads. “Come into the house,” I told her. “Into the safe room.” She was frozen, not quite sure, so I took one of the children from her arms and we moved quickly into the house, into the safe room with the others.

“Everything is okay, I said to Amit and Adi, and to the little girl I was now holding. “Everything is fine.”

“Hashem will protect us,” said one of the other mothers. Some of the kids were crying, and the moms were close. We’re not used to this here. We haven’t had years of rocket fire to harden us, to make this another part of living here.

“I don’t know where Yoni is,” Guy said, I asked if he wanted me to go look for him. “No, I will,” he said, and he left.

We heard the booms, close by. And a few minutes later, someone came in and said we could leave.

The owners of the house -- who had been in someone else’s safe room -- came home, smiles and welcoming arms, hugs all around. The sent us home with Yemenite pitas and sauces.

Yoni, it turns out, had arrived home moments before the siren. Together with Lior, Shir, and Noam, he was in our safe room, and they were all fine.

But it hardens you, little by little. It makes you angry that you have to live in fear. It changes you.

Thursday, July 17, 2014

A funny thing happened on the way to the hospital.

It’s been almost 10 hours, but I’m still not over it.


This morning, I took Adi to Schneider for a checkup. I had a lot on my mind -- I needed to remember to ask for a prescription, Adi’s PICC line needed to be rebandaged and flushed, I planned on cooking later in the day, and I was mentally reviewing my grocery list, and I had a great playlist on in the car.


Adi, per his request, was sitting in the seat behind me. We were at a red light about 3 minutes from the hospital when the sirens started. It took me about 3 seconds to process what I was hearing, and then I reacted pretty badly, in retrospect.


“We have to get out of the car,” I shouted, throwing the car into park, slamming on the parking brake, opening my door all at once. I flung open Adi’s door, shouting, “Get out, get out, get out!” This was not an ideal way to handle the situation, but I was totally unprepared. I should have made it fun, a game. I should have kept my cool. Adi was terrified as I pulled him out of the car, and I tried to get him to lie down so I could shield him. He refused to lie down. Around us, people helpfully shouted at me to lie down with him, but Adi wasn’t having it. I made myself as tall as I could and hugged him, trying to keep his head covered.


The booms directly overhead made me look up -- and them immediately wish I hadn’t, because the rockets were really DIRECTLY OVERHEAD.


My cousin (I can hear my husband now, “SHE’S NOT YOUR COUSIN, SHE’S YOUR MOTHER’S COUSIN’S DAUGHTER) posted this picture a little while ago.




It’s sidewalk graffiti in Tel Aviv. It means “Over 200 people killed in Gaza. Enough murder. Refuse.”


I want to take the person who wrote this and shake him. I want anyone who thinks Israel’s actions are unjustified to stop and think about this for a minute. I was on the way to my son’s oncology appointment this morning. CANCER was supposed to be our biggest problem. And in a matter of seconds, cancer was the farthest thing from my mind.


It took me a few extra minutes to get Adi and myself back in my car. The cars behind us never honked, and there were a few people who asked me if we needed help. (Adi has a lot of trouble getting his body up into the minivan, plus he was pretty confused.)


After I got to the hospital and got Adi inside, I saw that my hands were still shaking. It was about half an hour before they stopped. This was ONE rocket. (Well, three, actually, but all at once.) People in southern Israel have been living like this for YEARS, with multiple rockets falling DAILY for weeks, even MONTHS, at a time.


Think about that. Think about what you would do if ONE ROCKET threatened your children.

“BUT ABBI,” shout the Tel Avivim. “WHAT ABOUT THE POOR INNOCENT PEOPLE IN GAZA? OVER 200 HAVE BEEN KILLED IN THE LAST 10 DAYS!”


Yes. And that is a tragedy. It really is. Do you know why they have been killed? Because whereas Israel chose to invest in the early warning system of alarms and the Iron Dome anti-missile system, Hamas chose to invest in building underground tunnels for its “army” to use. Ordinary civilians don’t have access to those tunnels. Israel educates its citizens. When we hear the alarm, we know we need to take cover. Hamas instructs women, children, and families to remain in areas the IDF has announced it will target.


Hamas hides its bombs in family homes, in hospitals, in schools. Just today, UNRWA was stunned to discover 20 rockets hidden in one of its schools in Gaza. They were probably the only ones surprised by this incident.


When the IDF plans to target an area, it sends text messages to residents. It drops leaflets warning them to evacuate. It fires warning shots. And Hamas tells the citizens of Gaza: IGNORE THEM. DON’T LISTEN. STAY IN YOUR HOMES.


And then they die. It’s tragic, but it’s also what they are apparently choosing for themselves.


Much is being made of the four Palestinian children who were killed as they played on the beach the other day. Tragic, absolutely. But the children in southern Israel haven’t been able to play outside for days, because they live under the threat of bombs. Do you know what they do? THEY STAY INSIDE. AT HOME. CLOSE TO THEIR BOMB SHELTERS. THEY DON’T GO RUNNING AROUND OUTSIDE.


After ONE morning when the sirens caught me outside WITH MY SON, I am still shaky. I don’t plan on leaving the yishuv tomorrow.


This has to end.