Friday, October 21, 2016

Pike's Peak

John and I visited Pike's Peak in Colorado this summer. We were in Colorado Springs for a wedding, and didn't have a lot of free time for sight seeing, but we made a last minute decision to drive to the top of Pike's Peak. I did a quick search online for things to do and saw there was a scenic drive that would take about two hours round trip. We hopped in the car and took off.

I forgot to think about the fact that I'm afraid of heights. (Yes, I fly an airplane. No, my fear of heights isn't a problem when I'm flying.) My fear of heights isn't necessarily consistent; however it turns out that driving on narrow, winding roads triggers that fear. I may have had an actual panic attack on the way to the top, and I was uncharacteristically quiet.

The drive was beautiful, and once I adjusted to the view, I relaxed a bit and enjoyed myself. John and I did it together, like we've done most everything since I was 17 years old.

I was reminded of that drive today when we had an appointment with Alex's psychiatrist. The appointment was very timely, because we got the news four days ago that Alex's cancer was back. We're struggling a lot with the prognosis and the knowledge that we are dealing with an almost certainty that cancer is what will one day take his life. 

Alex's psychiatrist made the analogy that dealing with a diagnosis like this is a lot like driving on a winding mountain road. You can't see around every curve and at some places there are dangerous drops, but if you keep your eyes right in front of you, you can drive and the view is beautiful.

He also reminded us that we aren't going to be able to process all of these feelings overnight.

But today was a beautiful day. We had a lovely drive and admired autumn in Wisconsin. The leaves were beautiful and the sky kept changing. We had a visit with Alex's doctor, and then we went to Rocky's for lunch - one of Alex's favorites.

We learned today that Alex's treatment starts next week. We enroll him in the clinical trial on Monday, and go back for the first treatment on Wednesday. Froedtert is familiar and we trust his doctor and his care team. We're going to face this as a family and I'm going to do my best to only look at the road right in front of me. I'm not going to try and see beyond that bend, and I'm not going to look over the side. And, just like my trip to the top of Pike's Peak was ultimately worth it, I know that however this journey ends it will have been worth it. My life has been made so full and rich with Alex in it and I'm going to savor every moment.

Thursday, October 20, 2016


It's not like I didn't realize that a relapse was possible, or that I was unprepared for bad news. I had spent the days leading up to the PET scan trying to not give in to the feelings of anxiety and dread.

Anticipating a possibility and experiencing the reality are not the same, it turns out.

The sentence that I can't get out of my brain is that the treatments are "not curative."

Not Curative.

I had let myself begin to believe that Alex had a future; that he had fought cancer an won.

Now I can't breathe.

We were told that Alex was "lucky" in the cancer lottery; Hodgkin's is the "good cancer."

There's no such thing as a "good cancer." Cancer changes you and those around you. They say that when someone has cancer, the family has cancer. That is so true.

In the beginning, we were so hopeful. Six months of chemo and then Alex would be one of the 80% who were in remission and, hopefully, could eventually be considered cured.

That was not to be. So we prepared ourselves for the next battle. Salvage chemo and a stem cell transplant. And we made it through. Alex got a clean PET scan in February, and started consolidation chemo - brentuximab, a newly approved drug to keep him in remission.

This week was a routine PET.  A new spot lit up in his chest. They showed us the scan. They started talking about what to do next. They outlined two choices - a clinical trial or a newly approved immunotherapy drug.

That's when the doctor uttered the words, "neither option is curative, but some patients have stayed in remission for a long time."

We're taking the clinical trial. It also an immunotherapy. The rational is that at some point this drug will either not work or it will stop working and then we'll move to the already approved drug. If we start with the FDA approved drug the trial won't be an option once the other drug fails. This way, we have two options.

We were afraid to ask what "a long time" means.

The reality of Alex's cancer is washing over us in waves - waves of fear and grief and loss.  Grief and fear because now we know what our son will die from. He will die from Hodgkin's Lymphoma. We just don't know when. We don't know if he has weeks or months or years. Somehow we have to come to terms with this reality, we have to shore ourselves up to continue the fight, and we have to live in the time we have left.  Juggling all of those realities seems incomprehensible at this moment.

We're not just Alex's parents, we're his legal guardians, the legal decision makers. We've been making decisions on his behalf for his entire life. Now we're faced with the reality that we'll be making his end of life decisions. I don't know how I'm going to help my son die, and I don't know how I'm going to survive.

In the meantime, we have to be strong for him. We have to support him through this. We have to be hopeful and pragmatic at the same time. We have to put his needs before our own fears.

And we have to live life in the meantime. It's truly "bucket list" time. But Alex's life never looks like someone else's, so even the bucket list idea is fraught with complications. What does he want? His life is actually pretty simple. He likes time with his family. He likes rides in the car, and watching movies, making cookies, and going out to eat. We've decided to rent a motorhome and drive around Lake Michigan.  The family trip to Disney that we were planning for next fall as an "I kicked cancer's ass" celebration may need to be moved up. I don't know if we can wait a year. Will this be our last family trip to Disney? Or will he be around long enough for another one? I don't know. He's not one for grand gestures or lots of commotion. We have to figure out how to make more family memories while we have the chance.

We've been strong for two years. We've been strong for 24 years, I guess, since he was diagnosed with autism. Always looking at the positive. Pushing aside the "what ifs" and the grief and the jealousy of what other people's kids could do. Learning that there are lots of ways to live a life of value. But at this moment, all I can see is that Alex got dealt a pretty crappy hand. His life has not been easy. But we, and he, forged a pretty great life. We've always tried to figure out "what's next" and help him reach whatever he could.

But now there's no "what's next." I'm sad, and I'm angry, and I don't have the energy to put a brave face on it for everyone else's sake.

I know I can't stay in this place. Alex is here today. And the options aren't exhausted yet. But it's hard to stomach the fact that the fight is only to buy some time, and an uncertain amount of time at that. I've always worried about what Alex's life as an old man would be, and what would happen if he outlived Jessica. Now....

None of these words adequately express the depth of my feeling. When I was in high school I worried about having to "be brave." I don't even remember what I thought I had to be brave about. Years later, my mom would remark that we didn't know just how brave I'd end up having to be. I know that one of the main reasons she was so upset when her healthcare power of attorney was enacted, putting me in charge of her medical decisions, was that she thought I had enough to worry about with Alex.  She saw Alex a few days before she died, and he was in remission and doing well. I'm glad she's not here to go through this.

I just don't know how we're going to do this - other than doing it as a family, as we've always done everything. It's time to figure out how to meet the greatest test we've ever faced.