Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn’t a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

***

Frustration and Worry

Jack is home from school again. He’s in pain again. But the pain is now in his lower back. He’s also complained of pain in his elbows and his lower abdomen. He walks hunched over like an old man and Tylenol doesn’t help. (He can’t have ibuprofen since it’s a blood thinner.)

I’ve called the oncology clinic several times over the last few weeks. They don’t know why he puked last Friday. He never pukes. They don’t know why he’s still in pain – it can’t be the steroids because he had his last dose of those ten days ago. They don’t know why he was having chest pain a couple of weeks ago. They are “puzzled.”

I don’t know how others would feel in my position, but I don’t want my child’s oncology team to be “puzzled” by his symptoms.

My seven-year-old is walking around hunched over in pain – and has been for over a week – and no one is giving us any indication of WHY or what to do about it. (Well, they’ve suggested warm baths and warm compresses. Maybe your seven-year-old will tolerate those, but mine won’t.)

This.is.bullshit!

I just want my baby to feel better. I want to know he is getting better. I don’t want to worry about relapse.

Maintenance Is Still Hard

 

 

It should be easier than this.

We should be used to it by now.

We should have found our groove.

This should all be routine.

But it’s NOT easier. We’re NOT used to it. We haven’t found a groove and our routine is centered around getting through the day somewhat in tact.

We often feel like failures (as well as whiners). Our house is a disaster ALL THE TIME. We are so very tired, even after a full night’s sleep. Quality of sleep, no matter how long, has degraded over time. It will continue to do so – we still have two years of cancer treatments to get through. Not to mention that as Jack grows, the chemo dosages increase. And while the increase in volume is proportionate, side effects may not be.

Our ability to focus is pretty much shot. This makes things like work and math – and paying bills – harder. Yet it all has to be done. There are no exceptions.

We haven’t heard many people talk about this stage in treatment. We’ve been feeling pretty alone, not to mention powerless to change our circumstances. And after experiencing a year and a half of this, there is no indication that those next two years are going to get any easier. It’s just more of the same and as time passes, it wears on us more and more.

We went to Camp Okizu this past weekend and it helped. We felt less alone. We met other parents who also feel like it’s gotten harder instead of easier. We heard our fears of relapse echoed from other parents whose children have had fairly straight-forward cases. We weren’t the only ones waiting for the other shoe to drop.

In other words, it’s not that we have a flair for the dramatic – this is just part of the process.

A weight was lifted off of us for two days. We didn’t struggle to get out of bed and face the day. Jack happily did his homework while we rested. There were no bedtime struggles. Everything just went smoothly because we weren’t trying to fit cancer and its treatment into our regular life – we were able to go to a place where life has been adjusted to accommodate these challenges. That’s as close to a break from cancer as we can get!

We’re back home now and I’m feeling more at peace than before our trip. The same struggles are still present, but my state of mind has improved. I now carry with me the experience of meeting others who face the same things I do and the knowledge that my feelings and reactions are in the normal range. Somehow, it helps.

With this bit of calm and clarity, I can describe better why Maintenance is harder than the previous two phases of treatment. See, we were living a full life before cancer came along. And in order to deal with the curve balls cancer has sent flying at us, we’ve given pieces of normal life up in order to focus on dealing with cancer. Some people take big chunks out – quit their jobs, go on a leave of absence, withdraw completely from their social circles. In my case, I’ve taken little chunks out of every part of my life. I’ve pulled back incrementally at work, at home, and socially. This affords me the benefit of continuing to do most of the things I did before Jack got sick, BUT the downside is that it feels like cancer is affecting every part of my life. And because it impacts everything, I am not doing anything 100%.

Further, Maintenance took what had been a concentrated (intense) challenge and spread it out. Instead of cancer treatment impacting our lives once or twice a week in a big way, it’s impacting our lives every day. There is no downtime or ramp-up time between treatments – just a bunch of pills. Oh, and school now, too.

There’s also a bit of the “are we there yet?” syndrome going on. You know how the last hour of a long flight or car trip is the worst? Suddenly you just have to get out of that tiny space! It’s gotten too hot, too stuffy, too noisy, and your patience has completely worn thin.

That torturous hour is just what Maintenance feels like. And it’s not the kids asking “are we there yet?” repeatedly – it’s everyone else…

Is the cancer gone yet?

Is treatment done yet?

Is he cured yet?

Can we move onto something else now?

I wish we could pull this car over but we just have to keep driving.