Summer Tastes Like Freedom

dance-32193_640School’s out for the summer! YEAH!

This is big for us. Probably bigger (and better) than it is for most households. See, during the school year, Jack spends weekdays at our house and then all but one weekend a month with his dad (who lives an hour away). In the summer the schedule flips, so we will actually get to enjoy weekends and have leisure time with Jack on a regular basis! We’ll get to have play dates with his friends, too.

Not to mention that for the next two months our household will have a break from:

  • Homework
  • Packing lunches (with foods Jack hasn’t gotten sick of)
  • Strict bedtimes
  • Dragging Jack out of bed for school
  • Worrying about Jack going to bed on time
  • Being late or calling into work due to Jack feeling ill
  • The small annoyance of Jack’s teacher spelling his last name wrong regularly (it drives me NUTS)

David and I will definitely be enjoying the quiet time on weekdays, too. With our baby due at the end of August, this is going to be the last couple of months where we get to have stretches of time alone together without any kids to take care of. We will enjoy that little perk of shared custody while we can!

We have an exciting summer ahead of us for other reasons, as well. Jack’s 8th birthday is July 13. His Make-a-Wish is underway and he should have a completed TARDIS console in his room by the end of summer. In early August Jack is scheduled to go to Camp Okizu’s oncology summer camp where he’ll be away from his parents for a whole week – EEP. We are nervous about it and we’re not sure he’ll actually stay the whole week, but we figure we’ll give it a try. We think it will be good for him to get a little independence.

August will bring our baby and a new school year – Jack will start the 3rd grade. And then things will get messy (messier) again.

So for now, I’m going to try to enjoy a little bit of freedom!

Our Camp Okizu Trip

We recently spent a weekend at Camp Okizu, which is a free camp specifically for northern California families dealing with childhood cancer. Jack had attended with his dad and step-mom last year and everyone came back raving, so we were really looking forward to it. The camp didn’t disappoint and our trip was very special indeed.

So special that I’ve been ruminating over our experience and trying to put it into words since we got back a week and a half ago. The trip overall gave me a bit more peace, although I’m not sure I can explain why exactly. It was a little bit of stress relief, a little bit of validation, and a little bit of forced ‘dealing.’ It was a medley of awesomeness that was both healing and thought-provoking.

We each made our own name tags.

As for the awesome and fun parts, we spent some time shooting arrows at targets (I felt like Merida!), and Jack got to go fishing and actually caught a good-sized Bass. He was so proud! We sat down as a family for every meal! It was wonderful to sit together and relax and eat and talk without having to worry about cooking and cleaning. We attended a campfire and roasted marshmallows for s’mores. Jack ‘participated’ in a campfire song – which meant that he went up on stage with the other kids but acted like a frog eating bugs while everyone else sang and danced. We were afraid he was stealing the show from the other kids but everyone took it in stride (and we realized afterward that he was improvising because he has memory issues).

With some extra instruction, Jack hit the target!

We were told a couple of times that Jack was the favorite kid among the camp counselors. Jack always has a story about something strange and interesting, or a goofy joke to tell, and the adults just cracked up at his precociousness. Counselors sat with us every meal! One counselor made Jack a friendship bracelet and also helped him get a letter from the legendary camp mascot “Tajer” (who is part jaguar, part tiger, and part badger). I wish we knew her name and could thank her directly. The counselors were seriously amazing.

Sporting his new beanie.

In the mornings at camp the adults and kids were split up for separate sessions. The kids went and did various activities while the parents attended what was basically group therapy. We shared our stories – there were a many types of cancer diagnoses and families were in various stages of treatment. The founder of the camp led discussions on 504/IEP plans (and why every cancer patient should have them) and dealing with sibling issues, then opened things up to anything else that was on our minds.

The cabins in Harmony Ridge

One family there was dealing with a terminal diagnosis. Their story had quite an impact – they are living through our worst fears. It really struck me how unfair it is that a child can be perfectly fine and even neurotypical and then, out of nowhere, become incapacitated. Not long ago this child was attending school and playing with his friends and now he is in a wheelchair and steadily losing autonomy. Our story is a mere shadow of that, but still there are similarities. I’m reminded of the similarities – the scary parts of every case of cancer – whenever Jack wakes up and crawls to the living room because he’s feeling “floppy” from the chemo built up in his body.

We also heard from families who had similar prognoses to Jack’s and ‘smooth’ experiences who then went through relapse (one with ALL and one with another type of cancer). As strange as it might sound, that was both scary and comforting. I guess it’s nice to know we aren’t crazy for worrying about that possibility or for almost expecting it to happen. And these parents weren’t all that different from us and we could see them coping, so there was a sense of “if they got through it, we can get through it.” These people didn’t possess some special pool of bravery or coping skills that they were able to access when a new challenge came along. They just kept on doing the best they could and that was enough.

It was also nice to hear others – no matter the ‘severity’ of their situation – admit that they felt guilty for complaining about their difficulties. We ALL worried about those who had it worse than us.

It was funny to me that so many of us with different types of cancer situations were told similar things by doctors at the time of diagnosis – for instance, “this is the BEST cancer to have.” I don’t think it’s that the oncologists are intentionally distorting the facts to anyone – I think it has to do more with the strange nature of cancer – its complexity and the difficulty in determining statistics, plus the disconnect between science, medicine, and real life.

I think the only safe thing to say is that the ‘best’ cancer to have is NO CANCER AT ALL.

We plan to go back to Camp Okizu and I sincerely hope we will see some of the same faces we saw during this visit. I’ve heard it said before that the cancer club is not one anyone wants to be a part of, but you end up meeting some really amazing people in it. It’s very refreshing to see so much good all in one place.

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.