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Tuesday, March 24, 2015

The Glass Half Full

How are you? 

It’s a loaded question, and we often don’t know the answer.

No one in this situation does.

We are a million things. Our days are composed of a million different things—some good, some bad, some complicated, some simple, some sad, some happy, some so hard it is unbearable, some moments so joyous nothing else matters.

Once, while talking to a dear friend—a friend whose words so often inspire me—she told me about a presentation she had seen in which a woman held up a glass on the palm of her hand in front of an audience.

“What do you see?” She asked her audience. “For ten minutes, we will talk about what you see.”

Immediately, those watching her with her raised glass began to respond, “the glass is half empty,” some said. “The glass is half full,” others argued. For ten minutes the discussion ran back and forth, debating the merits of each perspective.

Finally, the presenter interrupted, “You have all missed the point. What this glass is, is heavy.”

Heavy

The past week has been heavy. For those that are connected with us via facebook, you know that Trevor spent a significant amount of time in the hospital last week.

Of all the weeks, it was the perfect storm of bad timing. The kids and I were sick—Ivie vomiting first (I can’t even remember which day now) and I began turning to Zofran to keep my nausea and stomach cramps at bay. Calling in sick to work wasn’t an option, my organization has a pretty stringent time off policy and I’ve been carefully trying to allocate the time available for when I need to be with Trevor at appointments.

Sunday, Trevor’s right leg was swollen, and we went to the Utah Valley Regional ER. There they diagnosed a blood clot, and after some discussion transferred Trevor to the Huntsman Center in Salt Lake City. I spent the night with Trevor at the hospital that night, leaving my kids with Trevor’s little sister who had come to help. After some discussion, Trev and I decided I would still go to work Monday, and our dear Josh and then Stacey came to stay with Trevor at the hospital. He was started on a blood-thinning shot, had a filter placed and was sent home.  But something wasn’t right.

I was even more sick on Monday night.  After a day of dry heaving and running to the bathroom at work my body was exhausted. When we went to bed that night I remember telling Ben, our brother-in-law, that I wasn’t feeling well and was so tired that we would need him in the night. Maybe this was the night Ivie threw up. I'm just not sure. I know that I was out of it. Barely waking up when Trevor had to go to the bathroom to get Ben or call for Ben—something I know was out of my control, but also something that I cannot quite forgive myself for—at some point in the night, things with Trevor were so bad that Stacey and Ben called the on call doctor and took Trevor back to SLC to the ER. Something I didn’t really process until the morning when I woke up and took more Zofran.

Cleared from work to spend the day remotely at the Huntsman, I went up to SLC Tuesday afternoon to the hospital.


Wednesday and Thursday I was to work onsite at an event in SLC. It was a big deal, a hard thing to explain that I might need to miss. Again, Trevor and our support team of Ben and Stacey assured me they would be okay. So I took more Zofran and went to work.

Wednesday night I had the option to say at the gorgeous location of the event, Hillary brought the kids up to me and—after not being able to see them for the past three days—we had a much needed night together. Then Liam began to get sick.

We made it through Thursday, I worked from the hospital on Friday and we were sent home Friday night.

Through it all, the doctors still aren’t sure what was causing all of the gut issues for Trevor. It could have been any number of infections, it could have been that with the bug we all had he was hit the hardest.

That is basic outline of events—the narrative in response to the question of, “How were things at the hospital?” There were a million other things that happened that week and through the weekend—pebbles dropped in our pond that have reverberations reaching into every aspect of our family’s struggle and healing. some good, some bad, some complicated, some simple, some sad, some happy, some so hard it is unbearable, some moments so joyous nothing else matters.

Honestly, of all the weeks so far, for reasons far more personal and tender than I can explain, between the exhaustion of work, the feelings of being unavailable for my kids and husband and the complete terror and helplessness of watching the person you love most in the world look as if they are going to die, this has been the heaviest week for me in this journey.

Looking Forward

Perhaps it felt so heavy, in part, because I knew that the coming Tuesday, today, would mean a lot. We had a scan scheduled that would give us some insight into the effectiveness of the radiation treatments.  It would reveal information we both desperately wanted and were also afraid to get.

“Are you sure we even want to know?” I asked Trevor. So often my tendency in the face of fear is to fold in on myself, to retreat, to withdraw from things that threaten to hurt me. 

Things were going, aside from the hospital trip, remarkably well after all. Trevor was regaining mobility and abilities rapidly. He was recovering processing abilities and energies we had feared might be lost.

I wasn’t sure we wanted any potential bad news to interfere with the hope and positivity and energy propelling us forward.

“I’m not ready to exit my own treatment.” Trevor replied, “We have to know how it looks."

The Glass Half Full 

“We are all, frankly, astonished. We did not think you would survive radiation.”

Those are heavy words—even though the miracle in them is evident. As our PA spoke to us about how surprised everyone at Huntsman has been by Trevor’s turnaround in the past month, we began to breath steadying breaths.

"Some of us have been doing this for 30 years, it takes a lot to shock us. And we are pretty surprised."

"I really thought I was saying good bye to you."

"When we told you we thought you should quit treatments, we never would have imagined you'd look as good as you look today." 

Trevor’s scan looks "cautiously optimistic." Many of the areas that showed tumor activity look lots better.

There are two new areas that we aren’t sure about. The scans show flares that could indicate swelling and irritation from the radiation treatments, or they could indicate new tumor growth.

There isn’t a way to know right now. We will take another scan in another month and reevaluate.

We are still holding a glass up on the palm of our hands. It is still heavy, but for the moment we can see it as half full, and we keep walking forward with that. 


As always, your love, prayers, support, energies and hope help to sustain us. Thank you. 

***Thank you too, to all who helped us in our hard moments this week - Ben & Stacey McAffee, Hillary Linderman, Ty & Erin Weedop, Jackie Ivie, Lacy Grover, Josh Jackson, Grandma and Grandpa Ivie, Mackenzie Johnson, Justin & Mikelle Linderman, the incredible HCI staff and our neuroncology team and the very many more who were far away making phone calls, sending texts and prayers. Thank you. Thank you. 

Monday, March 2, 2015

It Isn't Hard Enough Yet

Have you ever noticed that the moment right before you are ready to give up is also the moment right before a miracle happens?

I haven’t offered much of a medical update on here for a while.

How do you write about the fact that your husband lost virtually all strength and movement? How do explain how terrifying it is to see a physical deterioration that gets worse and worse each day.

How do you articulate the feelings that come when his doctors call him in and tell him that they might recommend stopping radiation treatments in light of the rapid physical deterioration. They are concerned that the symptoms we are seeing may evidence that radiation isn’t effective or that radiation may be making those symptoms worse. How do wrap your mind around talking about “quality of life” as opposed to simply talking about life?

As I talked with one of the doctors later on that particularly hard day privately he told me, “It’s unfortunate that we often metaphorically attach the analogy of a battle to fighting cancer because when things get too hard, and it becomes questionable as to whether or not treatments should continue to be administered some patients can view stopping treatment as ‘giving up.’ We are in this as long as Trevor wants to be in this. But if you can talk with him, help him understand that he may never regain the movement. Continuing radiation could make it worse. Tell him that he isn’t letting anyone down. Tell him he doesn’t have to do this anymore.”

How do you tell your husband that?

But I tried. In the dark quiet of our room one night I spoke slowly and carefully about the things the doctors had said. I assured Trevor I loved him, that I would hold his heart with me forever. That if he was done, this all could be done. Whatever time there is could be spent without drugs and doctors and IVs and appointments. I told him I would support him in whatever course he decided to take this part of his life. I would be there. I was with him.

“It isn’t hard enough yet to quit.” He responded.

And again, I wondered, how?

How is it not hard enough to be in pain all day and all night long? How is it not hard enough to be so tired that you can have only one or two sustained conversations per day? How is it not hard enough to not be able to feed yourself? How is it not hard enough to be so overcome with emotion when your kids hug you or your father lifts your dead-weight that you weep? How is it not hard enough to try and manage anxiety attacks that flare easily and are difficult to calm? How is it not hard enough to lose control of bodily functions we all take for granted? How is it not hard  enough to submit yourself everyday to treatments that make you feel exhausted and awful? How is it hard enough to not be able to move at all?

But all I said was, “I’m with you.”

Trevor has a spirit composed of a magnitude and strength that cannot be contained by a physical body. Nor will it be limited by a physical body.

To hear him tell it, after everyone who mattered the most to him was telling him it was okay to quit he became even more committed to getting better.

And, miraculously, he started to.

I will never believe anything less than that he is lifted by the heavenly and humanly collective energies, faiths and wills expended on our part, and by his own divine strength.

Slowly he has begun to regain some movements. He sits straighter on his own now,  fighting hard to find his balance. He can join us at the table. He can lift his right arm again, can balance a fork between his fingers and can feed himself at every meal.  He can take aided steps, standing and pivoting more on his own each day. He can slowly read small amounts of text that eluded him last week. He can find more focus even when the house fills with happy noise and activity. He can hold me again at night and we can connect through tender words and feelings.

Does all of this mean that he is getting better?

The short answer is that this moment is better—and that is all that matters. We have this moment.

Hopefully more mobility will come. Hopefully a stabilization period will come.

Trevor will finish his last radiation treatment today. For a while, at least, this means no more daily trips to Salt Lake City. It means his brain can begin to manage the damage caused by the radiation, and that might result in even more improvement.

We hope the radiation has disrupted the cancer’s progression.

We won’t know much until we have an MRI on March 24.

Until then, we won’t let the fear of tomorrow rob us of the miracles of today. And we don’t have to look very far to see just how many miracles there are.