Leaving Chemo Behind

I notice more changes in Jack every day as the chemo starts leaving his body. Most of these changes are good, and others are not so good but are likely temporary.

I have to say that as much as I want to leave chemo – and the whole experience of cancer – behind us, I can’t help but be reflective. We lived with treatment for more than three years and much of it became routine (albeit unpleasant routine). Suddenly we are in a different routine and even though it’s a normal life routine (mostly), it’s new again and quite a change. And even though we’ve lived with a regular life routine before, it’s new to us because we have been so changed by Jack’s illness.

So please bear with me as I continue to write about living with – and after – cancer. There is still so much to process.

Jack and Dez

Jack and Dez

 
The first change I noticed in Jack after chemotherapy ended was the increase in his energy level. Less than a week after ending treatment, he woke up on his own and popped out of bed with all of the vigor of his pre-cancer self. Now, he doesn’t jump out of bed ready to face the day every morning, but most mornings he is fairly easy to rouse now. As I posted on Facebook the first day this astonishing thing happened — when you have a young child, you spend a good deal of time wishing they wouldn’t wake up so damned early every day. That wish changes when you have a chronically ill child who sleeps in every day.

So even if he is back to waking up early on weekends, I have a new appreciation for the early rising!

With that said, MY energy level has not increased in alignment with Jack’s! As much as I’m celebrating the return of my kid’s bright-eyed and bushy-tailed side, I am also finding myself wishing for quiet and solitude more often. It feels like all of the energy Jack couldn’t muster over the last three years has simply been stored up and waiting…and now it’s a flood.

I’m hoping his energy level will get to be a bit more manageable with time. I am sick of hearing myself tell him to please stop shrieking like a raptor or to not be so wild and IN his brother’s face. Sigh.

Today as I felt a headache coming on, it occurred to me that I hadn’t heard Jack complain of a headache in a while. While on chemo, he essentially lived with a headache all the time. He got used to it and only asked for Tylenol when it got particularly bad – that tended to happen 1-3 times a week. When I asked Jack today when the last time was that he had a headache, he couldn’t remember. That’s a good thing!

Jack’s body is getting rid of the chemo in a physically noticeable way, as well. The meds had dried out his skin quite a bit, damaged the nail beds on his two big toes, and interfered with the process of normal skin shedding, creating some discoloration in areas. He also became extra sensitive to the sun, so even limited sun exposure resulted in him being very tan (and looking like a raccoon when he takes off his glasses). Now his skin is reacting to the lack of chemo in his system – his throat has broken out in an itchy rash (mild but still annoying) and it has edged up to his cheeks a bit. His lips have become chapped, as well, and he is even thirstier than he was when on the chemo. Clearly his body is trying to get rid of the junk and work on repairing itself.

That is also clear in the amazing increase to Jack’s appetite! He has eaten like a bird the last three years and since he was diagnosed at 5.5 years old, he has gained only about 8lbs (and didn’t consistency maintain that). He has gotten taller during that time, but no matter how we tried to add in calories in the absence of a decent appetite, he has remained on the disturbingly thin side. 

We don’t really have to worry about adding calories now – we just need to keep the fridge and pantry stocked. Jack eats ALL.THE.TIME. He wakes up starving, he eats everything in his lunch (whereas before we threw away so much of it that he didn’t eat), and he snacks constantly. All his meals are bigger now and he generally clears his plate. And then asks for more. He is kind of a human garbage disposal now!
I’m looking forward to his knees being less knobby even though that means I’m also going to be spending a ton on new clothes.

It’s kind of a strange time. I had expected life to calm down with the end of treatment but it hasn’t quite done so. It’s better, but it will still take time to let go and settle into life post-treatment.

Frustration With Kaiser Oncology

Jack’s health has (thus far) improved since he received vancomycin for the latest bout of c.diff. He was noticeably more energetic and all around happier within days of starting the antibiotics. It had been quite some time since I’d seen him run his mouth a mile a minute and run and jump all over the place. It was refreshing (and, yes, a little exhausting).

Jack’s ANC numbers, which climbed immediately upon his treatment being suspended, are still very high – the highest they’ve been in the last two years. They have remained high due to the fact that he is taking very, very small doses of maintenance chemotherapy since his hospitalization in August last year. In fact, the oncology team has expressed more than once that they are concerned about the low dose. The worry is that it’s not enough to keep the cancer at bay. But since August, every time the dose of 6mp and methotrexate are increased, his white blood cell counts plummet so the increases have to be made very conservatively.

Frankly, the oncology team seems frustrated. Jack tolerated much greater amounts of chemo for almost two years and they really don’t know why it’s suddenly a problem. And it sounds to me like they aren’t fond of the fact that they don’t have an explanation for what is going on (the test for 6mp sensitivity comes back normal, but he has symptoms of sensitivity to it anyway). The commentary from the oncology team is confusing and, often, seems to deflect the blame toward my kid or me…

“We think labs are being drawn too often.” – to which I replied that I am drawing them when they ask me to…

“We think this is school avoidance.” – so you’re saying that a psychological issue can wipe out white blood cells? Are we just ignoring the two c.diff infections now? Are you saying he caught it on purpose in order to get out of school? And we’re manufacturing the fevers somehow?

“The majority of kids on these medications do not have these problems.” – okaaaay…but my son DOES so what do we do now?

“We really don’t think this is related to any sort of relapse.” – I asked the question ONCE but you keep feeding me that line out of nowhere, so it kinda has me thinking that’s EXACTLY what you’re worried it is related to…

On Tuesday Jack was feeling unwell – he had pain in his stomach, his chest, his head and eyes(???), his hands and feet – all of which were unrelieved by Tums and Tylenol. It was two days post-6mp-increase and the day after an increased dose of methotrexate. I emailed our case manager to let her know how it was going – a warning in case this is the sign of another downhill slide of white blood cell counts – as it seemed pretty clear to me that the pain was related to the increase. I asked for nothing – I just wanted to keep her posted on his condition.

Here’s the reply I received:

“I’ve reviewed your concerns with Dr. Goodman and we are reluctant to validate the increased chemotherapy is the cause since the dose is still extremely low.

Looking back, from October 2012 to August 2013 he was taking approximately 3 times his current dose without any of these similar issues. I do not feel we can attribute his complaints of transient pain to an increased oral chemotherapy dose.

If you think nausea is playing into this, you should try Zofran once at night with his oral chemotherapy and again in the morning to see if this alleviates some of his complaints.

I would also like to emphasize that the overwhelming majority of kids tolerate full doses of these medications without complaints. The most common complaint is nausea on days (usually the morning after) when kids take their oral Methotrexate, but even that is not very common.

Ellie didn’t bring in Jack’s pain diary at the last visit. I recommend you and Joseph commit to keeping a pain diary (you can use a simple google calendar – it doesn’t have to be complicated!) for Jack’s pain and bring this into his next visit.

Please feel free to call if you have any concerns or questions about this email.”

I still have yet to respond. I don’t know how. I am trying (and failing) to not feel offended by the tone of the message.

My son’s care is in the hands of this oncology team and yet they are so dismissive of his experience. Not only that, but they don’t seem to know what they are talking about – I’ve done enough reading to know that others DO have these issues with 6mp and methotrexate (it was easy enough to find parents talking about the same thing going on with their kids when I did a google search) – or they are just straight up lying to me. I don’t understand why they would do that, though.

I’m hopeful that Jack remains fairly stable (he has felt much better since Tuesday) and glad he’s been doing much better overall. Still, I wish our oncology team was better at instilling confidence in the treatments they’re using. I wish they didn’t alienate us like this and instead tried to offer some support or even a little sympathy!

Perhaps Kaiser’s relatively low premiums don’t pay for things like concern for quality of life, though.

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.

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This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.