Month: August 2016

We never get a good week

Good news for a change…but wait…

Originally wanted to share some pretty good news with you.

Alison’s original tumor was huge. What was removed was the size of a grapefruit and that only represented about 80% of it. The fact she was walking around symptom-free for so long is a miracle in-and-of itself.

The remaining 20% was dealt with via radiation and chemo and after all that, that huge single mass was divided up into four discrete areas of tumor.

In the last MRI last week, two were not to be seen – which means that:

technical error happened two months ago and there never were those two spots of tumor to begin with,
a technical error happened last week and the tumors were missed, or,
those two spots disappeared.

Of course, both 1 or 3 would be ideal for us. But we won’t know for months.

The other two spots of tumor are large.

The most dangerous one, in the middle of her head, is unchanged. And that’s actually pretty good news because she’s not had any meaningful treatment since January.

And now for what was the best part: The other known piece of tumor has shrunk.

Why that is, is anyone’s guess. Perhaps it’s the insane things I make her do. Perhaps it’s the lingering effects of the radiation. Perhaps it’s a combination of the two. We don’t know.

Actually, this would normally be astoundingly good news, but for us – for her – it’s never just good news. We always get a side dish of: “But wait…”

Last night, we were in the ER again – the 10th time in 10 months – because she’s acting the way she did earlier in the year: Sleeping all the time, out-of-it, and very nauseated.

Why that is, is anyone’s guess as well.

After a night of tests, they couldn’t figure out why, and they also noticed that her bloods are bad again. This time, however, I insisted we go home rather than spend another week in a hospital with people poking and prodding her only to not be able to figure anything out again. So late last night, brought her home.

The short theory is that the surgery we didn’t get in July, we shoulda gotten.

It’s never so straightforward, is it? Figuring out what is felicitous and what isn’t.

A month ago, I was thrilled they let her go home and skip that surgery.

Now, I’m not so sure. I’m not sure of anything these days. Except that I have to, somehow, find a way to get my family home. Somehow.

\’

Location: the @#$@##@$@# hospital again
Mood: conflicted
Music: This is the joy that’s seldom spread

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Tags cancer, hope

personal

On the aggressive side of aggressive

Post author By Logan Lo
Post date 2016/08/17
8 Comments on On the aggressive side of aggressive

30 or 12,000?

Me: What’s wrong?
Her: I had a dream, I think, that I had a seizure. Or it really happened. I don’t know. I don’t know what’s real.
Me: Your mind is playing tricks on you.

We live our lives through stories. My hope is that some of my stories stay with you, in some way.

When I was a kid, read about the Mutiny on the Bounty and a portion of that story stayed with me. After Fletcher Christian took over the ship, he tossed Captain Bligh into a small boat. Christian assumed that Bligh would head straight to an island called Tofua, about 30 miles away and, to this end, gave them all five days worth of supplies.

But Bligh had a pretty audacious plan.

He was going to travel 4,000 miles – that’s the 500 miles more than the distance from New York City to London – in an open boat with five days worth of food and water.

Blight and his men were going to make it home or die trying.

So from April 28, 1789 they sailed in open ocean waters, each eating an ounce of food and half-a-cup of water a day. 47 days later, on June 14, 1789, they made it to safe to shore.

It wasn’t until March 14, 1790 that Bligh made it home to England. All told, they traveled 12,000 miles by ship.

With a glioblastoma, the most you can hope for is a few months.

I don’t tell you everything that goes on. Some of it is too horrifying to repeat. Like in this entry, didn’t mention that the doc said something I’ll never forget:

Glioblastomas are aggressive cancers. And her particular glioblastoma is on the aggressive side of aggressive. (pause) If you want to make her comfortable, I’ll do everything I can to help.

As soon as I heard him say that, immediately thought of Bligh. The doc was saying she could only make it the 30 miles to Tofua.

And my next thought was, “F___ that. We’re going home.”

That’s when I decided to start looking for another hospital. Because I didn’t want that kind of help. I didn’t want her comfortable. I wanted her in the fight.

Home is 12,000 miles away. And we have to endure tsunamis and tidal waves to make it there. Yet, we have no choice but to try to make it home.

Even if I have to swim with one arm around her and one arm paddling, I’ll get her home, somehow. It’s my job

And two days ago, we got a lifeline in the form of some hope. But that’s a story for next week. For now, we keep searching for familiar shorelines.

Her: I kept telling myself, “When Logan gets home, it’ll be ok. When Logan gets home, it’ll be ok.”
Me: Well, I’m home. We both are. And it’ll be ok.

Should mention that her first doc did an amazing job getting her to where she is now. For that, I’ll always be grateful.

But now things are different. We need someone who is believes she can make it safe to familiar shores.

\’

Location: two days ago, the hopsital again
Mood: hopeful again
Music: though the truth may vary, this ship will carry our bodies safe to shore

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Tags cancer, family, hope

personal

My grandfather passed

Hard to describe how it feels

The thing with this disease of Alison’s is that everything else is filtered through it.

My grandfather just passed. I’d like to comfort my mother and yet I don’t have time to tear away from Alison or the kid to do anything meaningful for her.

He was the last of that generation for me; I have no biological grandparents any more. Despite not seeing him in over a decade, in addition to the sadness, it’s a strange feeling of … loneliness? Not sure how to describe it.

Last saw him on my birthday, April 17th, 2005, 11 years ago, which might explain the pants in the picture below.

Had meant to see him and my grandma again but then I got robbed and had my own cancer scare so I couldn’t.

Couldn’t even go when my grandma passed because I was tied up in court and crap, piecing my life together again.

And the past seven years have been one bit of heartbreak after another. Then Nate was born. And then everything went to hell.

Life gets in the way.

He was 97 and had lived a good long life. I look at Alison and think that she’d have to live another 60 years to equal what he’s lived through. What a thing to think.

Was told that, near the end, he combed his hair. He was getting ready to see his wife again. We do so love our wives in my family.

Speaking of love, grandpa, I always loved you and grandma, even if I couldn’t head home to tell you in person.

You woulda loved to meet the kid. He’s got a grin like grandma’s. I woulda loved for you to meet the kid.

Rest in peace, and tell grandma that I miss her and our late night talks.

\’

Location: home, debating whether or not to go to the hospital again
Mood: sad
Music: Monsieur, lay down your burden

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Tags family