September 2019 – Mostly True

Change is Good

I would like to take this opportunity to apologize for not maintaining my blog as well as I should. It’s been a couple weeks since I’ve added anything new. I’ve had a lot going on but I promise to try to do a better job of updating this spot of the Internet.

So what’s new? In June 2018 I posted that I was undergoing treatment for Multiple Myeloma, a cancer of the blood. In that post I mentioned that my blood levels were once again beginning to rise, a sign that the cancer was adapting to the treatment regimen. Recently, the blood levels were taking wild swings, both up and down. Those swings were a clear indicator that it was time to change the treatment regimen.

The old treatment regimen was a daily chemotherapy drug in pill form. It was really convenient but I had been on the drug for nearly seven years, which is a long, long time with Multiple Myeloma. Eventually the cancer cells mutate and the treatment becomes less effective.

We’ve moved on to a relatively new drug called Daratumamab, commercially known as Darzalex, used in conjunction with a protreasome inhibitor called Velcade. I’ve tried to keep up to date on new advances in the treatment of the disease and Daratumamab is one of the most promising drugs available, so I was happy when we went in this direction.

Daratumamab is not a chemotherapy, but is a monoclonal antibody. Basically, it’s an immune system protein that attaches itself to the cancerous protein and either destroys it or allows another therapy, in my case a proteasome inhibitor called Velcade, to destroy the cancer cells. It’s a two-pronged attack and has proven to be very effective. Keep in mind that it’s not a cure for Multiple Myeloma; at this time there’s no such thing. It does buy you time, though, and over time new, more effective treatments become available, and there’s always the possibility of a cure in the future.

I schedule my visits early in the morning. I like it as I’m frequently the only patient for the first hour or so. The nurses are great and I have quiet time to just read or even nap. It could be worse.

There are times when I have the entire clinic to myself.

There are negatives to the treatment regimen. It’s an infusion drug, so for three to six hours each week I’m sitting in the clinic with an IV in my arm. After the first nine weeks, the treatment will go to bi-weekly, and after six months it becomes monthly, so it does get better.

Any time you have an IV inserted there can be some pain involved but it’s minor relative to the benefits of the treatment. The worst part, for me, is the grand finale, in which the tape is ripped from my arm. I’m pretty hairy and tape is not my friend.

Here’s a little story that I find really funny. My wife and I went to a Thai restaurant once. The waiter looked at me, looked at my arm, said “Fur!” and started petting me. I’d never been petted before, so it was strange, but it was also hilarious. I guess you had to be there.

The two worst parts of the infusion process- the placement of the needle and the removal of the tape afterwards.

The biggest negative, to me, is that due to the large amount of steroids they give me to fight off any adverse effects during the infusion, I can’t sleep. It usually lasts just the one night and, again, it’s a small price to pay relative to the benefits.

The last negative is that around three days after the treatment I feel terrible. I kind of see it as a war going on inside my body between the good proteins and the bad proteins, and I suspect it’s related to the body count of the bad proteins as the good proteins attack and kill the bad guys. Since I usually feel bad for around a day, I can live with that. Go good proteins!

I’ve been through four weekly treatment sessions so far and the initial results are promising. After the first two weeks my M-Spike, which is basically the bad protein level, dropped about 30 percent. That’s a significant decrease and one that gives me hope. My hope is that the downward trend in the protein count continues and that we can postpone a second stem cell transplant, which is a possibility, for as long as possible.

So that’s why I’ve fallen behind in my posts but I will try to keep it updated. Thanks for following and have a great day.

To Be, Rather Than To Seem

North Carolina’s state motto is the latin “Esse Quam Videri,” which means “to be, rather than to seem.” The motto appeals to me; I try to be honest in my dealings and do not attempt to come across as someone I’m not. With me, what you see is what you get. This huge 20-foot by 80-foot wall mural in Louisburg, North Carolina catches my eye every time I venture into the little town.

Created by Will Hinton, an artist and art professor at Louisburg College, the mural celebrates the state’s motto while adding some much needed color to downtown Louisburg. The six-foot tall letters are made of shards of ceramic and china, while the bright colors of the background are the team colors of Franklin County’s three high schools- Bunn, Louisburg, and Franklinton.

Hinton has several other works at the Louisburg College Campus. If you’d like to learn more about his work you can visit Hinton’s website here.

Esse Quam Videri

Coralia, Gerry Stecca, Wilmington, NC

I recently had the opportunity to spend a few days in Wilmington, North Carolina. While exploring our hotel, I came across this wonderful piece by artist Gerry Stecca. On first glance it looks very natural, like a spray of flowers on the wall or perhaps a collection of wooden baskets. Upon closer inspection, we found that this beautiful work of art is made of ordinary wooden clothespins!

Stecca has been using clothespins as the building blocks for his art since 2002, when he made a clothespin dress for a friend. Inspired by nature, his childhood love of Legos, and his interest in science, Stecca “sews” the clothespins together with galvanized wire to create beautiful works of art. Stecca says that creating his art from the repetitive use of the clothespins allows him to enter a “meditative like state” where he forgets about time and sometimes even forgets to eat!

I love the natural feel of the work. The variety of sizes and colors, as well as the seemingly random placement of the individual “baskets,” for want of better word, make it seem as if it just naturally grew. I can’t imagine the number of hours it took for the artist to create this beautiful piece.

If you’d like to see more of Gerry Stecca’s art, please visit his website.

Coralia- Gerry Stecca

Straining to Be, Wilmington, NC

This beautiful sculpture is by Wilmington artist Paul Hill. The piece, made of carbon steel and found objects, is located on Front Street in Wilmington, North Carolina. Being both a lover of art and a dog person, I love the way Hill captures the shape and the attitude of a leashed dog.

But there’s more to the work than “just a dog.” Hill uses animal imagery to depict, as his bio states, “the unpredictable human emotions and frustrations, that are daily being thrust into the lives of every person.” We are all “straining to be” free from the constraints that leave us tethered to our current situations.

I also love the art-deco feel to the piece, an influence that Hill has acknowledged. I can see similarities between Lee Lawrie’s famous art-deco statue of Atlas at Rockefeller Center in New York and Hill’s leashed dog, as Atlas strains to support the weight of the world and the dog pulls against the constraints of the leash that holds it back. It’s a beautiful work of art that I find quite moving.

If you would like to see more of Paul Hill’s beautiful art, check out his website.

Straining To Be Free- Paul Hill

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