Sunday, January 29, 2017

Line Up and Wait

John and I fly out of a towered airport. That means we need to contact the tower for permission to take off and land. Prior to take off, we follow an exacting checklist to make sure that both pilot and airplane are in a condition for safe flight. When the checklist is complete, the radio call sounds something like this:

Me: "Appleton ground, Cherokee 1599R is at the south T's ready to taxi for take-off, southbound, I have Lima (or whatever the appropriate call sign is for current weather).

ATC: "Cherokee 1599R, taxi to Runway 30 via November." (November is a taxi-way.)

The directions are precise and predicable. We follow prescribed procedures.

Once I get to the runway and do some more tests on the aircraft, I contact ATC again, this time on the tower frequency."

Me: "Appleton tower, 99R is ready to go on Runway 30."

Usually the response is:

ATC: "99R, Runway 30 is cleared for take-off, right turn to the south approved."

If the airport is busy, however, my instruction might instead be:

"99R, line up and wait."

That means I can get on the runway, but I have to wait for further clearance to take off. My engine is running, I'm ready to go, but I can't go just yet.

I feel like that describes my life right now.

Alex's cancer is like "line up and wait."

We've been told his cancer is "very refractory" and "resistant to treatment." We've been told the current treatment options are "not curable," but that they have kept other people's cancer at bay for "some time."

When we went through the clinical trial, there were a lot of appointments. To say we were disappointed when he developed a rash over more than 75% of his body three days before his third infusion would be a drastic understatement.

This week he goes for his third Opdivo infusion. He has tolerated it well so far, but starting yet another treatment has him understandably on edge. After a rise in his anxiety post-stem cell transplant, we made some medication adjustments that seemed to hold his anxiety in better check. Now with the latest new treatment, he's struggling a bit again. Who can blame him.

I hate that he can't ask us questions or tell us how he's feeling or processing this latest news. We've believed all along that he understands that he's sick, but we can't talk through anything with him.

I'm on edge as well.

This treatment schedule is easier on everyone. Alex is getting back to a somewhat normal routine at his group home. We go for treatment every other week for an afternoon. There are a few other appointments scattered here and there, but it is manageable.

This time, however, there is no end in sight. There isn't the count down of treatments we did with ABVD and ICE and Brentuximab. No, "six down, six to go."

I keep telling myself, and others, that I won't waste the time Alex has and I won't live from appointment to appointment and I try, but it's really, really difficult.

We're trying to live our lives as "normally" as possible, knowing that our normal has changed so much.

Alex is at his house, and he's comfortable. He didn't have good leisure skills to begin with, and cancer certainly hasn't helped that. He is tired a lot, and his anxiety compounds that. He naps daily, and spends a great deal of time in his room, in bed. He does get out with his housemates, rides along on errands, and goes on outings. I feel like his caregivers have a really good sense of when to push and when to let him be.

John and I are working, trying to keep with our normal routines as well. Sometimes it's hard, and sometimes it's a welcome distraction because when I'm in the classroom I'm able to focus completely on my students. There are bills to pay and responsibilities to meet, so there isn't an option to just retreat. I also know full well that retreating wouldn't be healthy for any of us.

Sometimes I'm exhausted putting a good face on all of this for others. I know people want to make us feel better, but I often feel like I'm making them feel better. "Yes, Alex is feeling okay." "His rash is gone." "Maybe we'll have time to find a new treatment."

Other times I feel guilty for "making such a big deal" out of all of this. Alex is feeling okay, right now. The doctors haven't given him an "expiration date" and I feel like that means we're measuring time in years, not months.

I also feel guilty that Alex is not at home with us all the time, yet I know it's better for all of us to continue his routine as long as possible. We can work because he has caregivers. We get a break from caregiving, and he gets a break from me hovering over him.

We do see him often - every few days - and make sure it is not just for medical appointments. Alex really isn't a "bucket list" kind of guy, but we're trying to make as many memories as a family as we can. I'm not sure exactly what he wants, but we're trying to do what we think gives him the most comfort and enjoyment.

Even though he feels okay now, I know his health is precarious and cancer is unpredictable and capricious.

All of which leads me to this place, this point of throwing up my feelings all over the page, trying to make sense of all of this. Trying to make sense of the fact that my son is slowly dying and that the best we can hope for is to delay the inevitable. Wondering if anyone at all will make it this far into my rambling post.

At the same time I'm trying to expose what's real and raw, I fell compelled to end by making you feel better. "We'll be okay." "Our family is strong."

I do appreciate the fact that I have time with him now, and I do appreciate that he is feeling pretty good. I am trying so hard to live in the moment and ignore the future. I just wish that holding it all together didn't take so much energy.

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