Back on the Wagon

Posted on September 28, 2022 by Margaret

Monday I resumed taking the Mekinist / Tafinlar chemo-combo. It amounts to 1 of the Mechanist every other morning and 1 Kafinlar every morning and every night. The last time I was at the ER, I was told, “These are heavy duty drugs. It’s no wonder you have side effects like you do.”

The thing is: I had 5 weeks with minimal fallout and at the end there, I had 103 degree fevers, headaches, and extreme fatigue. But the other thing is: the pills are killing this cancer like nobody’s business.

Annso and I are a good team and God is asking something very different from me than from her. She does 90% of the work with our little baby boy and helping me and I pretty much try to exist and follow the doc’s orders as far as rest, pills, and overexerting myself.

When I started back on the pills the fever came back right away.

I was hoping it would take a few weeks like it did the first time around. I take Tylenol for it but it’s a far cry from actually handling the headaches and fever. Just takes the edge off a little.

I ask myself, “Can I do this for 6 weeks straight, a week off then another 6 weeks, then evaluate?” There’s always the chance the symptoms back off and that’s what we’re banking on, but who knows. There are no guarantees. But for me, I really have no choice if I want to live. Cancer is still all over my body and would surge back with a vengeance without this treatment.

The other day I saw an embroidered plaque on the wall at the clinic that said, “Fighting since 2007.” I got a queasy feeling in my stomach when I read it. Wow. Fighting for 15 years. Fighting like I am right now for that long… good grief.

On the one hand, that person was probably delivered a death sentence like me… 2-5 years tops and now they’ve been at it for 15.

I think that’s why God doesn’t tell us the future. We are capable of far more than we think (with his help of course) if we don’t know what’s coming.

It seems like forever since we moved to Rochester, but like they say with raising kids, “The days are long but the years are short.”

The days do drag on when I feel like this, but I’m thankful we have the solution and IT’S WORKING. I need God like never before and Annso would tell you the same. She just went on her second walk of the day with little Will in that baby carrier just to keep from going crazy.

I did the first, but wasn’t up for the second.

We jumped in at a great church with both feet.

One of my doctors invited me while I laid in the hospital.

We have small group and meetings with others who have suffered and overcome like me. Those are some of the biggest helps.

Also, many of the things I learned in Alcoholics Anonymous come in handy.

“One day at a time.”

“You won’t always feel the way you do today.”

All we can do is keep on duckin’ and swingin’.

Thank you all for your prayers. We need them now more than ever!

A Moment of Truth

Posted on September 18, 2022 by Margaret

As Nelson wrote in his last blog post, he’s looking forward to the scans that are scheduled to happen this Wednesday. It will have been six weeks since he started taking the immunotherapy pills (two each day), and the upcoming scans will be a moment of truth: Are the pills working or not?

In recent days Nelson has been feeling almost like his old self, breathing well without extra oxygen, cutting back on the pain pills, sleeping less, and dealing with only mild nausea. But as is true of this cancer, no matter how good he feels, there’s always a new crisis quietly brewing in the background.

On Friday, September 16, he, Ann Sophie, and Will drove the 80 miles to Luke’s house to spend a quiet weekend away from the apartment and from all things medical. But during the night, Nelson spiked a fever (102.7) accompanied by chills so powerful he shook all over. His oxygen slipped to 80 with a heartbeat of 160.

On Saturday, the high fever and chills returned, prompting them to call back to Mayo’s for a doctor’s opinion. Their advice was for Nelson to head for the ER…again. So they left Luke’s in a rush, and he was checked into Emergency by late afternoon.

It was another nine hours before doctors finished all their tests and had the results in hand. Since his numbers seemed to be where they’ve been recently, many in the normal range, they weren’t sure what was causing the fevers, chills, fast heart, and low oxygen.

A thousand mg of Tylenol brought the fever down, but they hesitated to let him go without a reason for his symptoms. They did have a couple of ideas, though. The doctor told Nelson, “These pills you’re taking (immunotherapy) are hard core drugs.” In other words, it’s possible the weeks of taking them have accumulated somehow to now cause his body to react negatively.

Their other idea was that his cutting back on the opioids might be causing the same withdrawal symptoms as any addictive drug would cause.

Nelson hoped not to be admitted to the hospital again, and though the doctor suggested an overnight stay for monitoring, he chose instead to head home. But that wasn’t the end of it.

Today the fever and other symptoms have returned, and though Ann Sophie urged him to return to the ER, Nelson wanted to battle it out at home. They did call the doctor, who suggested they “pause” the immunotherapy pills for now. Nelson has four appointments at the Clinic this week, and as always, the medical staff will be current on all that’s occurred in these last couple of days.

While these new negative developments hang over Nelson and Ann Sophie, they did get some good news at the ER. A scan showed that the initial tumor, the one that has been causing Nelson to cough till he wretched, has shrunk by nearly half. We like to think that surely those powerful little pills are, indeed, beginning to overwhelm the cancer. His coughing has almost completely stopped.

Another plus is that his severe neck pain of a couple of weeks ago is gradually improving. They don’t know conclusively if it was a broken bone or cancer in the spine, but whatever it was, it’s been able to heal itself. This is refreshing news.

And so we await this week’s appointments, hoping for new hope—and a very positive moment of truth.

“Be strong in the Lord and in the power of his might.” (Ephesians 6:10)

Plus Outweighs Minus

Posted on August 23, 2022 by Margaret

The old adage “no news is good news” applies to the lack of recent blog posts. Nelson is doing better than ever in Rochester, Minnesota, on his journey through these six months (so far) of cancer treatment.

Since our last report ten days ago, lots has happened—or I should say hasn’t happened, since there have been no visits to the ER and no hospitalizations. And here are some other things that are, thankfully, no longer happening either:

Nelson’s right lung has dried up in terms of producing fluid, and the catheter has now been removed.
His swollen right arm and both legs are much less swollen after diuretics removed 20 pounds of fluid from his tissues.
His appetite is back.
His nausea is nearly gone.
His doctors believe he’s almost strong enough to go to the full dose of targeted immunotherapy. (When he had Covid, along with simultaneous other challenges, they’d started him on only a half-dose so as not to overwhelm him.)
His daily dose of morphine has been decreased by a third, so his pain is less.
He doesn’t use oxygen at all now and maintains levels between 92-96. He can take short walks and go on low-key outings.

None of these things would have been possible a month ago, and Nelson’s overall situation has improved dramatically. As Ann Sophie put it, “He’s more of his old self now, interested in projects and very sharp mentally.”

Of course he still has lung cancer, so there are some negatives that remain:

His left lung is still producing fluid, though it’s much reduced, measuring about 300 ml each day.
He still struggles with fatigue, so outings have to be brief with space between for rest. This is quite the opposite of Nelson’s healthy self when he was hard working and loved adventure, the more the better. But his work now is to fight this powerful disease, and he is fighting well.
Though the fluid being produced by the cancer cells seems to be decreasing, his swollen feet and bloated abdomen are still problems.
A new development is a sore neck with pain traveling from neck to shoulder. Doctors are watching this and will most likely do an MRI to investigate. His team has told them not to worry about this, but as Ann Sophie said, “Easier said than done.”

Thursday Nelson will have another blood test to determine if he’s strong enough to handle the full dose of immunotherapy. If they decide to do that, he will no doubt experience an increase in nausea. But they’re ready with all the anti-nausea drugs he might need, and all of us hope the stronger therapy will agree with him. A double-dose would mean a doubly strong attack against every cancer cell.

In the mean time, we continue praying—and trusting the God who we know has a good plan for Nelson’s life.

“Trust in the Lord, and he will act.” (Psalm 37:5)