It Meant Everything - Tribute to The Nadas

While I was a student at Iowa State University, almost everyone else was regularly spending their Friday nights at People's Bar & Grill to see Ames' favorite band, The Nadas, perform. I didn't realize this. I was probably sitting on the couch next to Sam's dad watching football or sleeping through a baseball game.

Later, when I was going through my divorce and suddenly found myself twenty-seven, single and childless every-other weekend, I discovered The Nadas. It was a momentous occasion, actually. The night it was set to turn 2000, I decided I wanted to do something memorable. I'd read that The Nadas were hosting a New Year's Eve Party at the Hotel Fort Des Moines. I made up my mind to go. But, I had trouble finding anyone to go with me.

I called several friends who declined for various reasons. Thankfully, my friend, Tracey, took pity on me. She left her kind husband, Jim, home with her sweet kids, Jessie and Matthew, put on a gold sweater and braved the weather to accompany me to the party.

When we first arrived and were walking up the stairs, I noticed a handsome, interesting-looking man going down the stairs. At the party, Tracey and I had fun talking and hanging out, milling around, checking out the scene. There was that guy again. I pointed him out and Tracey encouraged me to go talk to him.

He was kind. He told me he was recording the show, on video, for The Nadas, who were friends of his. It turned out we had been at Iowa State at the same time, in the same department. As a child, he had visited the San Francisco Bay Area with his family and decided he wanted to live there (just like me.) He lived there at the time. I was intrigued.

I went back and hung out with Tracey for awhile longer. She said she wanted to be home to ring in the New Year with Jim. She didn't want to leave me alone but I was having fun at the party and wasn't ready to go yet. It was easy to blend into the large crowd of people dancing and celebrating.

I walked Tracey out then came back in and saw him. He smiled at me. Later, when they were getting ready to count down to midnight, some guy I didn't know and wasn't interested in turned to me. Just then, the guy I liked arrived with a bottle of champagne.

It was like something out of a movie. When the clock struck midnight, he kissed me. Then, he told me that he was invited to perform a few songs with the band. He invited me to join him backstage. I happily agreed.

Afterwards, we went to the band's after-party party. It was so much fun. The guy introduced me to his best friend (who had a young son who was close to Sam's age (Sam was two)) and I met an amazing percussionist who was also kind.

The guy was around for the weekend. We hung out a time or two more before he left town. The romance continued via phone, email and music we shared. He'd given me three Nadas CDs. I listened to them by myself and imagined the words were intended for me.

"We've got the world to see, you and me."
"I miss you."
"I could tell by her sweet smile, she was a very nice girl."

I was in love.

During the time we were "dating" The Nadas put out a new CD, Coming Home. Even though he was back in California, the guy encouraged me to go to the CD release party.

I went & had a very fun time at the Val Air Ballroom in Des Moines. (Co-worker pictured, not "the guy.")

The next day, I had tickets to go to the Iowa State men's basketball game, at Hilton Coliseum, in Ames. I'd planned to take Sam with me to the game. We headed up to Ames a bit early to spend some time on campus. We ended up at People's for lunch. The Nadas happened to be setting up for that night's Coming Home CD Release Party in Ames. They went out of their way to greet us & be kind. I remember the percussionist calling Sam a monkey (in a good way).

Mike Butterworth, of the Nadas invited me to come to that night's show. When I said I didn't have a babysitter, he said he could find one if I wanted to come to the show. I thought that was incredibly kind but didn't really think I would take him up on the offer. But, after exploring campus for awhile, I called him & said that if the offer still stood, I'd love to come to the show.

He made a few phone calls then explained that the person who had been their sound guy would be happy to babysit Sam so I could come to the show. I expressed surprise that the sound guy didn't want to come to the show. Mike explained that the sound guy was sick of the show. I got the sound guy's address & went over there w/Sam.

I wasn't sure I was going to actually leave Sam w/someone I didn't know but when we got there, I just felt completely comfortable & was confident Sam would be fine & have a good time. So, I left him & went to the party. It was great.

Before Valentine's Day, the guy I'd met on New Year's Eve, who had introduced me to these fascinating people, was interested in moving on. He thought he had a chance to have a relationship w/someone he liked a lot. I was disappointed but understood.

I kept going to Nadas' shows. I kept asking people to go with me. Often, my friends were home w/their husbands & I went alone. The ad agency where I was working was throwing a pep rally for the city of Des Moines. We discussed having The Nadas be part of that party. My "Coming Home" cd was taken to the client meeting where they pitched the idea. The client agreed wholeheartedly. The Nadas performed at the event & were asked to write a song for the pep rally, for Des Moines. They did. It was great.

In the meantime, I'd been offered a job in St. Louis. Sam & I moved there that fall. Once, when Sam was in Iowa, visiting his dad, I drove to Carbondale, Illinois to go to a concert by another band, a group who'd toured w/the Nadas. I was lonely & looking for something familiar, looking for kindness. I met my friend, Melissa Rose Ziemer that night. (She would later play a role in my meeting Cam.)

A year after leaving Des Moines, I was back, living & working there w/Sam. Again, my friends were busy w/their families. Again, The Nadas were playing shows, having parties. Again, I was invited to be part of the audience. My job at the time took me to Chicago about once a month. I was able to see The Nadas play in Chicago once or twice. I hoped it wasn't weird to keep going to their shows but their music is meaningful to me & I was so thankful to have something fun & social to do. I kept going.

Recently, I had a chance to tell Mike Butter-
worth about how Sam & I moved to Chicago when Sam was 6 years old, how we met my husband, Cameron, there & how the three of us moved to San Francisco/Marin County, California when Sam was nine. Mike said, Sounds like a fairytale :)

While it does seem like one sometimes, there were lots of hard times along the way. I greatly appreciate the light The Nadas shown on those dark times. They helped me get through. I tell this story because I want The Nadas to know how much their music, their show can mean to people.

On one of their live CDs, when a reporter asked them what the band's name, The Nadas, means, they answered, "It means NOTHING." I want them to know that for this single mom who was trying to find herself, searching for happiness, "It meant EVERYTHING."

Bring on the X-Wing Fighter - Attacking the Lymphocytes

As I wrote about in my last post, while, initially, we thought my thymus was the problem. (Sam says my thymus is like the emperor from Star Wars. The supreme ruler of the most powerful tyrannical regime the galaxy had ever witnessed.)

We now think my lymphocytes (a type of white blood cell responsible for defending the body) are confused and have started attacking my normal, healthy infection-fighting white blood cells (my neutrophils & monocytes). We are calling the attacking lymphocytes the Death Star.

So, how do we defend against the Death Star? Rebel Alliance spy, Dr. Lopez, believes something called immunomodulating treatments will neutralize the attacking space station. We're hoping these treatments will knock down my lymphocytes so my neutrophils and monocytes can grow.

Before they start the immunomodulating treatment, the anti-lymphocyte program, they want to do another bone marrow biopsy so they have a baseline and can make sure there are "no funny cells." (I'm not sure when they will do the bone marrow biopsy. He usually does them on Fridays so it could be as early as next Friday.)

As part of the treatment, I will receive an injection of some type of steroid. (We've already tried quite a bit of Prednisone and while the doctor noted that I responded to it somewhat, he said, I didn't respond well and my response wasn't permanent.) They want to use something more profound (his words).

A few days after they have been able to review the results of the upcoming bone marrow biopsy, they want to give me an infusion (an introduction of a solution into the body through a vein for therapeutic purposes) of something called ATG (antithymocyte globulin) for a few days.

I will also take a pill of something called Cyclosporin. I don't know much about these specific drugs or any potential side effects. Dr. Lopez says they have had good results using immunomodulating treatments. He said it usually really works for patients like me.

He said there are three possible outcomes. One is that everything will be better, meaning that after the treatment, I will have normal numbers. The second possible outcome is that things will be "better enough," meaning I won't have the numbers I had before I became ill but that they will be better than they are now. The third possibility is that the treatment does not change anything. He said having no response is the least common outcome.

Sam said the treatment was like Luke Skywalker in his X-Wing Fighter. With the aid of Han Solo, the spirit of Obi-Wan Kenobi, and the power of the Force, Luke Skywalker was able to successfully hit the small target, and triggered the Death Star's demise.

The Death Star - Defending Against My Lymphocytes

Yesterday, I had my second appointment with my third hematologist. Dr. Alfredo Lopez is a really likable guy. However, I have to admit that during the two months since my first appointment with him, there were times I was perplexed, annoyed, concerned and even angry with him.

Dr. Lopez kept telling me to just keep doing what I had been doing, from a treatment perspective. This didn't make sense to me since I was moderately to severely Neutropenic almost the entire time. (Neutropenia is what it is called when you don't have enough infection-fighting cells.)

I wanted to believe that it was alright not to worry, since he didn't appear worried, but I was afraid he just wasn't paying attention. I was afraid I would get sick with an infection I could not fight, become seriously ill and possibly even die because that's was what I kept reading (and have been told) could happen to someone who is severely Neutropenic.

Yesterday, Dr. Lopez explained that he and a team of hematological experts have reviewed my bone marrow. Apparently, all of them are in agreement about what it looks like. He said it looks like I have an immune mediated condition.

What does that mean? I'm still learning but according to Wikipedia, Immune-mediated diseases are conditions which result from abnormal activity of the body's immune system. The immune system may over-react or start attacking the body. Autoimmune diseases diseases are a subset of immune-mediated diseases.

(The idea that I might have an autoimmune disease has come up a few times. Autoimmunity is the failure of an organism to recognize its own constituent parts as self, which allows an immune response against its own cells and tissues.)

While I had been discouraged by my number of Neutrophils (a specific type of infection-fighting white blood cell), Dr. Lopez was encouraged by my total white blood cell count. He said it was super.

He said my counts are at a functional level and he believes this is because I have had a nice response to Neupogen (the medication that was supposed to help me make white blood cells).

He's also very encouraged that my condition has stabilized. (I was sick before. I haven't been sick lately.) This has been encouraging to me too.

However, Dr. Lopez says there is something going after my infection-fighting cells and knocking them down. He said this thing thinks there is something wrong with my infection-fighting cells (which is not the case. I just have less of them than I should.)

He stressed this point, that there is nothing funny, sick, weird or abnormal about my infection-fighting my cells, several times, saying it was key and really important.

Even though the quality and function of my infection-fighting cells is good, he said there is a mother cell driving them out. When I was explaining this to Cam & Sam last night, Cam said it was like the Death Star was attacking me. Death Star: an instrument of terror posing threat of annihilation...

So where is my Death Star? Dr. Lopez thinks it is my lymphocytes. Lymphocytes are a type of white blood cell that plays a large role in defending the body. They make antibodies that attack bacteria and toxins or even attack body cells directly when they have been taken over by viruses or have become cancerous.

Dr. Lopez thinks mine are confused and attacking my Neutrophils. So what do we do about it?

Health Crisis Recap

As most of you know, I have been being treated for a problem with my immune system since last fall. I wrote about the early stages of my illness and treatment on this blog:

Chapter 1: What's The Deal?
Chapter 2: Blue-Green Algae/Night Chills
Chapter 3: Music, New Antibiotic, First Blood Work
Chapter 4: Trip to the ER - First Hospital Stay

To summarize, in August of 2009, I had a bacterial infection that wouldn't get better. In September, my blood work showed that I had almost no infection fighting cells. I was told to go to the emergency room. Initially, the doctors thought I had Leukemia. They did a bone marrow biopsy but did not find Leukemia. They kept searching for the cause of the problem.

A CT Scan revealed that my thymus gland was larger than it should be. They were fairly confident that this thymoma was causing the problem. Four different doctors said it needed to be removed.

In October, I underwent a fairly major surgery called a mini-sternotomy where they cut through my breastbone to get to my thymus (located under the sternum, near my heart and lungs). It was removed. (They call this a thymectomy.)

I had been told recovery from the surgery would take some time. (They said I would have pain for about six weeks. I ended up having pretty major pain, requiring pain medication, for four months. Physically, I have felt much better since mid-February. I do still have a bit of pain for which I take Motrin daily.)

After the surgery, I was told not to push, pull or lift more than five pounds for at least three months. At my three month post-op appointment, they said I should wait another three months before doing any weigh-bearing activity. Because our insurance changed, I haven't had my six month post-op appointment yet but was told yesterday that I could resume normal activity, within reason. If it hurts, don't do it.

Back in October, I was also told the problem with my immune system would likely be resolved fairly soon. They said my numbers would likely be better within 2-3 days after the surgery. They weren't.

For the past six months, I've been on various medications to help me produce infection-fighting cells. Sometimes, I had enough. A few times, I had way more than I needed. But, disappointingly, I haven't been able to maintain an adequate number of infection-fighting cells consistently with or without medication.

Here's something I wrote in November about one of the first times my numbers dropped. I wrote this update about my treatment, in February. In March, my numbers were worse than they'd been before the surgery. I wrote, The Bogeyman is back.

Yesterday, I had my second appointment with my third hematologist, Dr. Alfredo Lopez. He outlined a new plan. I'll write about it in another post. As always, thanks for caring.