New things?

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This has been the adventure of a lifetime for me with a series of “firsts” like almost never before. I think, in our lives, we gravitate toward as few of those as possible the older we get. We do have our bucket lists, but more to do with having fun. I want to see the Great Wall of China, go skydiving, raise a family, learn a language or take a kickboxing class-you might have one or two NEW things you want to do before you quit this earth.


But mostly we like to be familiar with the day-to-day of our lives. The less unknowns the better. But at other times, things are done TO us or FORCED on us out of the necessity to survive. These are not always fun “Firsts”, but we do them for the greater good.
Most of the time, I’m scrambling to find something to keep normal amidst all the change. If I was asked to give a progress or update on any given day, they wouldn’t hold all that much action in and of themselves.

There are empty spaces like Friday and today. I was working out a kink in what the insurance would cover so they didn’t substitute a cheaper, less effective chemo drug for the one the docs actually prescribed, but I never actually went in for any procedure. I spent the time making phone calls which finally landed the chemo 2 days later than expected but still going forward unchanged and for that I’m soooo grateful.

Funny how my gratitude list can change. Yaaay for chemotherapy! 
It’s important to keep the main thing the main thing and remember the real reason we’re here. 
The treatment itself IS the main thing, not the symptoms. When we go to the doc, it’s usually to treat symptoms. “I have a headache, a toothache, indigestion, a broken arm, whatever… but one thing the Mayo clinic is good at is sticking with the attack on the Cancer itself over the symptoms.
I have swelling in my ankles, stomach, and back, These are fluid build-ups from infection in my body. Difficulty breathing is an ongoing problem and we do a daily fluid-drain so I don’t drown in it. There is ongoing pain in my rib cage and they treat that with opiates that cause constipation. There are meds for the constipation. It can be frustrating to bring a request or ailment to a doc only to have her brush it off and say, “That will correct itself once the cancer is under control. ” But she’s right. As much as I want to FEEL as NORMAL as possible, I want the Cancer gone because that leads all roads back to NORMAL.
So to sum up the symptom list for today: swelling is almost gone in my left wrist and arm (yaaay), swelling is the same in my ankles, stomach and back (booo), has gone down to 275ml at the nightly lung drain at 8pm (yaaay), nausea has all but subsided (yaaaay), breathing is more difficult than ever because of the stomach fluid (booo), I have meds for pretty much anything so there’s at least some relief if anything gets too gnarly (yaaay)

My second round of chemo IS happening Thursday morning despite the tussle (yaaay), We’ve been able to hang with my sister, Linnea who is helping us for 4 days (yaaay), and little Will keeps the rest of us in great spirits overall. (yaaay)


That’s where we stand here in late June and no one but God himself really knows what new thing waits for us tomorrow, but I’m ok with that. He tells us that today has enough trouble of its own. And you know what? He was right.

Another one from Nelson…

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Ann Sophie and I (Nelson) read the Bible, 1 chapter every day and have done so in chronological order since we got married almost 5 years ago now. We’re on our second run though it. 

The funny thing is: if you do this and don’t skip around, your circumstances line up with the reading in an uncanny way. For example, right when I received my Cancer diagnosis, we started the book of Job. 

If you know the book of Job at all, the majority of it is consumed by a series of monologues coming from Job’s friends who visit him, all taking on a little different flavor. Some say he’s being punished for sin, others say he should do something or needs to realize something to make the judgement of God stop. Job’s own wife even delivers a shocking message of her own!

Either way, they all have a message for Job. 

I mentioned this to Ann Sophie and how similar it is to what we have going here (if you put me in Job’s position). Many people have come and gone since we moved to Rochester and everyone brings a message or leaves us with a feeling. Some come to help set up furniture (Thank you!!!) Some bring a word of encouragement or help take care of little Will. Some have known me all my life, and call almost wanting to say goodbye. I mean stage 4 lung cancer, right?

But the one common reaction almost everyone has though is this: Surprise. 

“Wow! I’m shocked by your optimism.”

“It’s amazing, you and Ann Sophie have such a positive vibe going here.”

“You sound much better than I expected.”

“You look better than I thought you would.”

“I’m so encouraged by our talk.”

“What a blessing is has been to see you, talk to you in person, hear your voice, etc…”

And I guess what I would say is that even though my diagnosis is grim on paper and maybe most folks who get what I have don’t last too long, I have just one approach at this point.

God gave me a beautiful little family. He also gave me a fairly good composition. The docs have given me good odds and told me about treatments we are going to try that my body is likely to respond well to. So many people have committed to us in prayer. I can hardly believe all the cards and letters and gifts we’ve been given. I’m even excited to be an encouragement to others who have what I have once we’re out of the woods at some point in the future. I have NO PLAN to say goodbye to anyone or get in that mode at all. Some might say I’m in denial. Maybe, But one thing I know is this: the war is won and lost on the battlefield of the mind and that’s the only battle I can actually control. And that battle actually controls the outcome.

That being said… and for me and my house, we are living every day like it’s the last and every day like it’s the first of many more to come. We’re committed to the God who can heal me and we are walking that out day-by-day. That’s my proclamation and the only way forward for us. There’s no plan B. I have the most dynamic, optimistic, beautiful woman on the planet and a 15 week old baby boy who need me to stay alive for as long as possible and alive is what I’m going to stay!

How are you feeling?

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Is it our imagination? Or does Nelson really feel better? Could he actually be better?

Logic tells us this can’t be true…not yet. Nelson has had only one round of chemo and immunotherapy, yet to look at him, to listen to him, to watch him move tells us it’s true. He’s feeling better.

These many weeks, it’s been a challenge for him to walk the few steps from our apartment to the car without becoming winded, but yesterday he went for a walk with Ann Sophie, Will, and friend Jeremy from Tennessee. Then, later in the day, he suggested a second walk. “I feel a lot better,” he said.

Two mornings ago, he woke up saying, “Last night was the best sleep I’ve had since this whole thing began.” And there it was again. He’s feeling better!

We’ve heard about cancer patients who receive a blast of chemo, have a terrible week or so, and then start feeling better, like they did before the treatment. But this isn’t that. This is feeling better like he felt many months back, long before cancer treatment ever began.

Nelson is skipping some of his pain pills now. When he says, “I don’t really need that one,” we hear him saying he’s feeling better.

Last Thursday, he decided to get a haircut and went without either Ann Sophie or me. He drove himself. When he returned with shorter hair, my first thought was, “a new beginning.” And maybe it is.

Nelson is eating Ann Sophie’s healthy cooking, and he’s wearing his compression stockings to avoid blood clots. And when it comes time to drain his lung of its fluid close to bedtime, the three of us have always played a little game. We’ve each guessed at the milliliters that will end up in the bottle.

But during this last week, each night we’ve all guessed too high. What comes out now has decreased from more than a liter and a half to only 250 ml. This is an astounding development, and we are thrilled.

 

And one last thing. As the lung fluid has become less, it seems there is less swelling in his arm, hand, abdomen, back, ankles, and feet, too. Because of all this, we are rejoicing!

Of course we all know that circumstances could change tomorrow, and a new cancer-surprise might have arrived. Since he will most likely have his next chemo/immunotherapy on Tuesday, anything can happen in response to that. But as we practice living one day at a time, today has been a very manageable, exceedingly good day.

 

“This is the very day God acted—let’s celebrate and be festive! Salvation now, God. Salvation now! Oh yes, God—a free and full life!” (Psalm 118:24-25, The Message)