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.

Wednesday, January 25, 2017

Alex Needs Your Help - Please!

I've been writing for two years about my son Alex's battle with cancer. I've shared the many ways that Alex's autism complicates his treatment and how he lives every day with cancer.

Today I write with a different purpose. I am writing about how the proposed changes to healthcare will impact Alex. I am hoping that this blog post will reach further than any other I've written. If you are reading this and you are concerned about the current state of healthcare and anxious to see changes, I desperately hope you will take the time to read this. Perhaps learning about Alex's story will help give a face to this issue. Alex, and thousands of other people, need our help.

The Trump administration plans to convert Medicaid into a block grant program, and it seems that they intend to do it quickly. It is highly likely that this change will result in reductions of benefits and access to healthcare. Alex's treatment is costly, and if he is denied coverage and cannot continue his treatments, he will die.

This isn't a game, or a discussion of political ideology, this is life or death.

I ask that you simply contact your representative and ask that they slow the process down to fully understand its impact. There is absolutely no reason to move on this change so quickly.

So you ask what you can do? You can help by protecting Alex's access to his critical medical care. Alex's life depends on you. Please!

We are writing to our representatives, as well as to Senator Ryan, the architect of the block grant legislation, and following up with personal phone calls.

This is the letter we are sending to our representatives:

Dear Senator Johnson,
Dear Senator Baldwin,
Dear Congressman Gallagher,
Dear Congressman Ryan, Speak of the House of Representatives,

I am writing to you on behalf of my son, Alex Forster. Alex is a 26 year old man with autism. Alex is nonverbal and requires constant supervision. He lives in a group home not far from us and has been thriving there, thanks to the government programs that provide for his care. He lives in a home with three other young men who also have developmental disabilities and they have around the clock caregivers. Alex has a part time job and is active in the community.

Two years ago, Alex was diagnosed with cancer. He has endured multiple treatments, including more than one chemotherapy and a stem cell transplant. After several months in remission, we learned recently that his cancer is back and the battle continues. He is receiving an immunotherapy treatment that we are hoping will extend his life. Right now, he feels pretty well and the side effects of his treatment are minimal.

Alex's healthcare is provided through Medicaid. He has received excellent care at Froedtert Hospital in Milwaukee and Fox Valley Hematology and Oncology in Appleton. Due to his current Medicaid coverage, Alex's doctors have been able to make decisions about his care based entirely on his medical needs. His doctors and his medical coverage have saved his life.

We understand that congress is looking at converting Medicaid to a block grant program, and that this change may happen quickly. We implore you to not rush to making changes without thoroughly exploring the consequences of these changes. We ask you to vote no on any immediate changes and take time to carefully explore options that will protect our most vulnerable citizens.

If the decisions about Alex's medical care are made by politicians with the emphasis being on cost saving measures, and these politicians refuse or cap Alex's medical care so that he cannot get the treatment he needs, Alex will die.

Let me be clear, if Alex is denied treatment due to changes in Medicaid funding, he will die.

This is America, and we ought to be able to protect our most vulnerable citizens. Alex, and many others like him, are counting on us.

Thank you for your time and consideration. We will be following this letter up with a phone call to your office.


Caroline and John Forster

Follow the link to find out how to contact your representatives:

Contact Your US Representative

Contact Your US Senator