Lymphoma?

As Nelson’s hospital stay at the Kona hospital continued, doctors tried to pin down all that was wrong with him. Because of “unnumbered” nodules in his lungs, they went with lymphoma. Nelson was glad to hear it wasn’t lung cancer.

He had smoked off-and-on since his late teens but hadn’t had a cigarette for over six years. Surely that had been enough time to clean out his lungs from whatever damage might have occurred during his smoking years. And many lung cancer patients didn’t smoke at all, which meant, in Nelson’s case, it was possible he wasn’t responsible for bringing on the lung cancer. He hoped that was true.

From his journal:

May 12, 2022

I’m at the hospital for the 4th night now. Last time I was admitted here was in 2003 when I was almost killed in that wreck with [cousin] Andrew. This time, I might be here because I was reckless, too, [by smoking] but not recently. Maybe the mass in my lungs is from smoking or any number of other things that could give you lung cancer. It’s pretty much what I have. You never think it will happen to you, even though you have a chest pain once in a while and think of worse-case-scenarios like that.

Then all of a sudden a doc calls me on the phone after looking at a scan and tells me, “We found a mass next to your heart, and nodules without number in your lungs. Looks like general lymphoma.”

More tests and lots of coughing later, I’m here after having 1.3 liters of fluid drained from my right lung alone, in a hospital bed enjoying the buzz of a couple of pain pills as I stay here for the last night, hopefully.

It’s Annso’s birthday tomorrow, so I would like to be there for that if possible. She has been by every day so far. Thank God she’s willing to bend the rules when necessary, to see me. It would be super lonely without anyone with me.

Last night I had this panic attack, because I felt I couldn’t get enough air. Even just sitting here, I was out of breath, even on oxygen. [Cousin] Luke offered to help us get into the Mayo Clinic, if we wanted that.

We took him up on it, considering this island is a place where it’s hard to make things happen. When it’s something like a dryer you have on order that takes 12 weeks to get in and once it comes in, they don’t even call to tell you it’s in, you can laugh about it. When it’s your cancer scan results and they don’t bother sending them to the other doc or just lose them altogether, it’s hard to stick around and trust them with your life when there are other options.

I’m thankful, Lord, for Luke and his generosity, for BBC [Brentwood Baptist Church in TN] and theirs, for a total change of plans. For everything. Not what I would have wanted, but you can use it. I wonder how it will be. Like Papa? […died 42 days after diagnosis] Or will I get better, at least for a little while? NO one knows.

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“Do not throw away your confidence…” (Hebrews 10:35)

Try not to worry…

This is Nelson’s mom Margaret, writing for Nelson tonight. I’ve been here in Minnesota for a few days, enjoying the company of Nelson, Ann Sophie, little Will and his other grandparents, Astrid and Ralph, from Germany.

Since Nelson last posted a blog, he and his family have made the move from a rented apartment to the new home they’ve bought. Owning a home that’s two blocks from the many buildings of the Mayo Clinic is a big advantage for someone who finds himself needing the services there, many times each week. For example, Nelson has one appointment tomorrow and four more on Friday. But as a result of him being so frequently at Mayo’s, his cancer cells are on the run. And that’s the whole point.

But none of it comes without a price. The stronger the treatment, the harder to bear. After weeks of taking the daily doses of two powerful immuno-chemotherapy drugs, Nelson’s liver had recently begun to show signs of deterioration. His medical team decided to give his suffering body and his liver a week-long break, hoping Nelson and his liver would both benefit.

During this time, Nelson felt much better—except for the severe pain in his hip that radiates down the back of his leg. This pain began in his lower back where scans showed cancer cells in his bone marrow weakening the bone and causing a vertebrae to crack. That pain then radiated gradually toward his hip, and eventually down his leg.

There is no spinal stenosis, for which we’re happy, but Nelson’s pain has been debilitating. Scans show the cause as a pinched nerve between the spine and the pelvis. He can’t walk except with his new cane—a lifesaver. Without that, he wouldn’t be up and about, so the cane is something to be grateful for.

Scans have also shown that the bone marrow is breaking down in other places in Nelson’s body too, so we’re all praying against any more of that, and against worrying about it, too.

On Monday, the doctors put Nelson back on those powerful drugs that always take him down with high fevers, sudden shaking chills, and lots of vomiting. But same drugs also kill cancer cells. The doctors altered the dosage slightly to determine which of the two drugs is the one harming the liver. Despite acute suffering while formerly on these drugs, Nelson was all “yes” on resuming them. It’s a love-hate relationship but is the only medical tool left in his toolbox.

Despite all that, last night God gave Nelson the best night’s sleep in a long time (in the chair), and this morning he felt well enough to head for the basement in the new house (actually an older home) to do some work on shelving. Days of this kind of energy are few and far between, but when they come, they bring joy and encouragement.

In Nelson’s last blog he shared about an infection in his left side around the catheter they were using to drain his lung. They prescribed antibiotics, and those have worked their magic. The infection is gone, and the redness, too. The right lung catheter has been reinstalled and is once again being drained daily (250-300 milliliters).

Ann Sophie’s parents, Astrid and Ralph, have worked like troopers the entire time they’ve been in the USA, cooking meals, babysitting, chauffeuring, packing, unpacking, shopping, painting, helping in every way imaginable. They are amazing all of us as they bring their stamina and strong work ethic to every task. Ad their willingness doesn’t end.

Today, Ann Sophie and I had fun unpacking a few more boxes and rearranging  the sunroom, which for now is baby Will’s new bedroom. It’s a cooler place to sleep, but his new sleep sack keeps him toasty warm. Despite the serious nature of these difficult days of dealing with cancer, having Will in the middle of things brings laughter and light-heartedness to us all. He helps us remember that God’s instructions are:

“Do not be anxious about tomorrow…” (Matthew 6:34)

The long Haul…

So I resumed the chemo drugs this morning as planned. They called yesterday and due to the fact that I just had Covid and have been having trouble draining my lungs of fluid, the team opted to wait until this morning.

l can’t tell a whole lot in the way of side effects so far, but here we go…

In other news, I have a blood work-up scheduled for 840am at the clinic tomorrow, a 925am meeting with one of my Oncology docs, and a 255pm Echocardiogram (heart) so they can get a clearer picture of what’s going on. 

And what else is going on? 

Well, everything has been really great on most fronts other than low oxygen levels and shortness of breath. I can’t breath so well, especially at night and when I asked about it, they answered with these tests and this meeting. Being out of breath at a resting position is disconcerting at a minimum. I have these panic attacks when I can’t breath.

Waking up in the middle of the night feeling like you’re drowning is no fun at all. I am grateful I have an oxygen machine at the house, thanks to my cousin Luke who just happened to have one lying around. So overall, I’m blessed. Chemo drugs are working. I can manage pain and side effects fairly well, and life with the family is going great. 

However, I want things to move faster than they are, but here I am taking steps back into the land of breathing machines and tests like we did back in May. 

But I guess that’s what people mean when they say they are fighting cancer for years.

You wonder, “How long will this go on, Lord?”

It gives new meaning to the Psalms that go on and on like that.

My friend told me it’s a mind game, which is true. Most battles are won and lost in the battlefield of the mind. Attitude is everything and even effects the outcome much of the time. 

But as Ben Franklin said, “Well done is better than well said.” 

But who can really pull it off? 

Who can stay positive and overcome when it’s lonely at night? 

None of the people who are around me are sick like I am, so it does feel lonely.

I hope I can overcome. I want to stay positive. 

I try to use the “tools” I have been given to get through it. 

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” ~ Serenity Prayer