Leaving Michael

I left the hospital, around noon, on Friday, 7/29, shortly after hearing from Michael's step-father that the neurologist had told them my friend no longer had brain activity.

Before leaving, I went into Michael's room to be with him & his mother. She stood on one side of his bed, talking with him & lovingly stroking his forehead. She talked about how there were so many things they were supposed to do together, how they were supposed to have decades ahead.

I stood on his right side & held his hand. I talked with him a bit too but not as much or as aggressively as I had the other day, when we still hoped he might wake up & start answering us. When we still hoped he was with us & hadn't gone, wasn't lost. So many people wanted so badly for that to be so. If only wanting it could have made it so...

Michael's brother arrived. I decided I was ready to step out, let him have time with his mom, with his brother. While I greatly appreciated all of the loving-kindness & comradery I had shared with Michael's friends & loved-ones in the waiting room of that ICU, I needed space & time to sort it all out.

I've said it before & I will say it again, "Losing Michael is a horrible tragedy. The world needs more of him, not less."

So, I left. I didn't even really say goodbye to most people. I told a couple, then, practically snuck out, down the stairwell, like maybe I was just going to move my car to a new two-hour parking spot, but, my two hours were up. My days of waiting with baited breath, of hoping & wishing & wondering were up. My friend was gone. I decided I was getting out of there too.

It felt somewhat cowardly & even shameful to leave the people I left behind, to face what I knew they would have to face, in the coming hours & days, but I had done all I could do & I was thankful that I was one of the ones who was able to leave, had the luxury of being able to flee. I believed Michael would understand. I hoped those who love him would too.

So, I got in my car & drove home, back, across the Golden Gate Bridge & started pulling things out of our apartment's tiny storage closet. I sorted & organized & packed our camping gear. We hadn't been camping in over a year, since Yosemite in April of 2010. We'd been wanting to go, hoping to go, planning to go, I was going. (Y1, Y2, Y3) Although, I wasn't sure where....

I went back inside & got out a map & tried to find a place another CASA volunteer turned friend had told me about, a place she'd visited, south of here, where there were all these really cool caves with bats. I decided that I thought she was talking about Pinnacles National Monument & started thinking that's where we should go.

Cameron had just finished his work week & was going to be able to get away for four days. (Sam was traveling with the family of one of his friends.) When Cameron pointed out that because it is about 60 miles inland, Pinnacles was going to be in the 90s that weekend, I started to think his idea of sticking to the coast was a better one.

But, I didn't want what I had, what I already knew. I wanted new & different, startling, breath-taking beauty. I wanted a place to get away, to escape, to sit & think & process & grieve & mourn & reflect & remember & to just be.

Cam said, if we left before the traffic got bad & just drove, that we could pretty much make it to Oregon that night. Oregon was a place neither of us had been, a place we both think we might want to live someday. They say, "Oregon is for dreamers." Maybe it was the place for us?

I took a look at some photos another CASA volunteer turned friend had shared with me of her bike ride down the Oregon & California coast. I flagged places she'd been I wanted to go, googled directions to see how far away these places were, to see what was reasonable & realistic. Then, we just got in the car & were gone.

Michael the Child Advocate

I had the privilege of meeting my dear friend, Michael Scribner, in the fall of 2007. Michael had just graduated from an extensive 40 hour training program, and taken an oath before a judge who swore him in as a court appointed advocate for children in the foster care system, a CASA. I was a new case supervisor at San Francisco CASA (Court Appointed Special Advocates).

As a CASA, Michael voluntarily committed to step into the life of a child, who has faced abuse or neglect, and to be there on a regular basis. Michael agreed to pay attention to how things were going, be in regular communication with those who are important in the child’s life, listen to their perspectives, then provide his own. Michael was asked to provide fact-based observations & recommendations and put them into a written report for the court.

CASA is a national organization, started in the 70s, by a judge who realized that while most of the professionals who are charged with caring for a child who is a dependent of the court have the child’s best interest at heart, they are asked to look out for so many children that they aren’t able to know each child personally.

The idea behind CASA is, “Each one, reach one.” That way, when judges, attorneys, and social workers are in court, making decisions about what is right for a child, there would be at least one person there, in the courtroom who could say, “I know this child.” “Here is what I have seen, heard and what I recommend.”

Michael agreed to do these things for at least 18 months (the organization’s minimum commitment), which, of course, he exceed. It was my job to help him select which case, which child’s set of circumstances would be the best match, then, offer supervision and support.

Michael had gone through training with a woman who was his friend. They hoped to work on a case together. We had a set of siblings on our waiting list, an eight-year-old girl, and a ten-year-old boy who were new to the foster care system.

We thought their case would be a good match. Michael and his friend agreed to become their court-appointed advocates. At almost the same time, a major change happened in the life of Michael’s friend. She wasn’t able to be there in the way she had hoped. Michael and I partnered to pick-up the slack until she would be more free. He met the kids on his own in a foster home that was conveniently located blocks from where he was working. (At the time he was employed as the director of the Haight Ashbury Food Program, supporting the principle that freedom from hunger is a right.)

The kids warmed to Michael immediately. However, a short time into their stay in this home, it came out that some of the kids’ basic needs weren’t being met. Suddenly, they were yanked out of this home and put into a new foster home. Almost before we could get the address of the new home, we heard about alarming, concerning things that may have happened in that new home and found out the kids were being moved again. This time, they were moved to Vallejo, a community over 30 miles north of San Francisco, in the East Bay. With traffic, it could easily take an hour to reach by car. Michael didn’t have a car. He didn’t need a car to navigate the city but this community was beyond the reach of BART, our Bay Area Transit System.

Michael’s friend, who had a car and was supposed to be making this commitment with him, realized she was not going to be able to uphold her end of the agreement. She decided to come off the case. Despite these challenges and obstacles, Michael was committed. He already cared and said he would be happy to become the advocate for both kids.

These kids did not embrace everyone. The little girl would climb a tree at school and refuse to come down until the fire department came but they would RUN to Michael.

He brought donated presents to them that first holiday season. He offered support to this foster family who was providing the kids with things like swimming lessons, a bike, a yard, and loving-kindness. Michael spoke with the kids’ therapist, attended meetings at their school, got the court to order tutoring, applied for a grant and received funds to help buy new school clothes for them the following fall. The list goes on.

And this, his volun-

teering as an advocate for those in need, is just a glimpse, a tiny tip of the iceberg into the wonderful person who was my friend, Michael Scribner.

Losing Michael

7/27/11 @ 1:15pm - Yesterday, a dear friend of mine was in the hospital, scheduled to have surgery to repair a broken bone. While he was getting ready for the surgery, he was being given some calming medicines. Then, unexpectedly, his heart stopped beating.
Thankfully, the doctors were able to resuscitate him. Right now, he is being kept unconscious while undergoing a treatment that is intended to protect his brain.
His mom is flying here to be with him. I am planning to be at the hospital tonight to offer support to his family & other friends. Your thoughts, prayers, well-wishes & positive energy are appreciated. Love, Mary
7/28/11 @ 5:30am - Awake, thinking about my dear friend, Michael. So thankful to have been able to be with him yesterday, to talk to him & hold his hand, to remind him that we need him, to meet his mom & to celebrate our love for him with some of the amazing people who are his friends. We are ready for him to wake up & join the party. Thank you for caring about him.
7/28/11 @ 12:58pm - About to head to the hospital where I plan to play/sing this song for Michael. "Won't you come out to play?" "Greet the brand new day." "The sun is up. The sky is blue. It's beautiful & so are you." "Won't you come out to play?" "Open up your eyes. See the sunny skies." "The wind is low. The birds'll sing that you are part of everything." "Won't you open up your eyes?"
7/29/11 @ 6:38am - Feeling quiet today. (Thanks for asking & caring.)
7/29/11 @ 1:44pm - I'm going to go offline for a few days. No cell phone or internet. I've loaded the camping gear in the car & am about to get out a map to see if I can find a park I've heard of, somewhere south of here, that has awesome caves. I'm going to take space & take time for myself to just be, to breathe, contemplate, reflect...
8/1/11 @ 7:07pm - Back home. Slowly rejoining the world. Hope each of you is well. Much love...
8/1/11 @ 8:16pm - "All that I know is I'm breathing. All I can do is keep breathing. All we can do is keep breathing..."
8/2/11 @ 10:18am - Still working on how to answer you guys who are wondering, "How is your friend, Michael?" I left the hospital on Friday, shortly after hearing that a neurologist said he no longer had brain activity. Needed (still need) space & time to sort it all out. Losing Michael is a horrible tragedy. The world needs more of him, not less.
8/2/11 @ 10:17am - Michael wasn't my lover but we shared intimate parts of ourselves with each other. I will miss him always & forever, every day. "Goodbye, My Friend. You have been the one. You have been the one for me." "And I still hold your hand in mine." "I'm so hollow..."
8/2/11 @ 5:41pm - Just got a chance to read this loving, touching story written about my friend, Michael. It gives you a glimpse of his beauty (& more info about his passing). I especially like the part where Colleen says, "In honor of Michael, may we continue to learn and grow, seek and explore, live and love at full throttle with no limitations, no fear, no holds barred – just as he did."
8/3/11 @ 4:43am - "Maybe the best way we can honor his memory is to amplify what I see in everyone Michael touched. We can hold on to something he stood for: kindness, good humor, joy, perseverance, or even rocking a red dress." "Even if the vessel that held Michael is no more, the concept of Michael can stay with us in how we treat others and how we ourselves continue to live."
8/3/11 - 5:15am -"Though difficult, I am mindful that this kind of grief can only be experienced by someone who has known a true and wonderful friendship." "Saddened by my loss? Yes." "Grateful for the experience? Yes!" ~ Toby Causby (Who is like a brother to Michael.)
8/15/11 - 11:53am - "It is a beautiful life. And I'm so happy. And I miss my friend. I miss you."
9/7/11 - 6:25am - "Michael the Child Advocate" by Mary Maddux
8/15/11 - 2:20pm -Join us in Celebrating the Life of Michael Scribner: Dear Friends and Family of Michael, For the last several years, Michael celebrated his birthday (and many other occasions) with a picnic in Dolores Park. We are continuing the tradition by celebrating his birthday (September 13th) and his life with a vegan potluck in his honor. Michael's mother Terri, his stepdad Dick, and his stepsisters are coming from Michigan to join us all.
Place: Dolores Park - San Francisco
Date: September 11, 2011
Time: 12 pm to 5 pm
8/15/11 - 3:32pm - "A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is worth keeping and with a breath of kindness blow the rest away."~ Arabian Proverb

They want me to try taking Cyclosporine again.

You may remember that early last summer, I was hospitalized while I was given an immunosuppressive treatment for what doctors think is an auto-immune condition.

Results were up & down for the first few months but then, starting in late September, my numbers got better & stayed good for a period of eight months. Everyone was hoping that the treatment had fixed the problem, that I was "better."

The treatment involved three medications. Doctors thought it would be best if I stayed on one of them for a year. In mid-May, when it had been a year, I stopped taking it. We checked my numbers at that time & they were considered, "fine" called, "good."

Then, in mid-June, after a month with no medication, we checked back. I was hoping my numbers would be great. Instead, they were lousy, incredibly so. My doctor said it appears this is a condition I have, something we'll need to work on managing rather than expecting to cure.

Last month, he asked me to try a medication called Neupogen in hopes it would boost my numbers to safe enough levels w/o my having to go on the other medication again. The Neupogen gave my numbers a bit of a boost but not enough to make us comfortable, especially since the idea is that something is attacking my cells. Just increasing them won't do the trick if something is knocking them down.

Today, he said he wants to try having me go back on one of the immunosuppressant medications to see if that will work better. That medicine, Cyclosporine, is given to people who have had organ transplants to try to keep their body's defense cells from attacking something good & necessary. We'll see if it will keep my lymphocytes from attacking my neutrophils.

He wants to start checking my blood work every week again for awhile. So, that's the plan. Feel free to contact me directly if you have questions or would like to discuss. Otherwise, as always, thanks for your care & support.

Well, Crap. (ANC of 200)

Yesterday was a day full of doctors & dentist appointments. Sam had three baby teeth pulled. (They were preventing his permanent teeth from coming in.) He also had a check-up w/his pediatrician. In the midst of it all, we stopped by the hematologist's office so I could get some blood work done.

We were checking to see how things looked after a month of no medication/treatment. As 1500 is considered the low end of the normal range, I'd been a bit bummed that my last neutrophil count was 1100 at the end of May. I was hoping to be above 1500 this time, maybe even above 2000.

In this doctor's office, they have this cool machine which processes my blood & gives us data minutes later. When the phlebotomist looked at the numbers, she first mentioned a 2.8. For a second, I thought she meant my neutrophils were 2.8 (which would be 2800). I said something about that making us happy.

Then, she clarified that 2.8 was my total white blood cell count. (That number is supposed to be above 4.5.) My neutrophils were at 230. Since anything below 500 is considered life-threatening, that makes us less happy, I said.

I haven't had numbers that low since early September. Since that time, my numbers had been over 1000 for the past eight months.

The doctor passed through the room (I have an appointment w/him next week on the 30th) & said that it really wasn't too surprising and that I shouldn't worry. While I cried about 1100 last month, I didn't have it in me to worry about 200. Maybe when it is this bad, I feel there is no point wishing it were a little bit better.

The doctor asked me to give myself a shot (in the stomach) of a medicine called Neupogen which is supposed to help me create neutrophils. I have had good results w/this medication in the past (sometimes remarkably good) but haven't been able to maintain good numbers w/or w/o this medicine alone. (I hadn't taken it in over a year.)

The doctors seem to think I'm doing an alright job of making Neutrophils but that something has been "knocking them down" or attacking them. (Generally, they blame my lymphocytes, the white blood cells that are supposed to protect me against viruses.) The treatment I had almost a year ago, a treatment they give to people who have had organ transplants, was in hopes we could get this pattern of my body attacking my body to stop.

It didn't look like it had worked to me at first but then it looked like it just took a few months to work. I didn't want to take one of the medications (Cyclosporine) as I'd been told by other hematologists that it was toxic. In the hospital, they said, "It is toxic & you need it." I agreed to take it as part of the treatment (which was supposed to be a five day treatment).

I didn't know they were going to expect me to leave the hospital taking it & kept wondering when I could stop taking it. Eventually, per the request of a hematologist at UCSF, I agreed to taking it for a year. Now that I've been off it for a month & my numbers have plummeted, my hematologist is talking about possibly asking me to start taking it again. I don't know how well it will work on its own as my understanding was that it was part of a broader treatment but I guess we'll see.

So, I'm fine, really, I think, but I am back to having to decide if I will be a guinea pig for them again. Not expecting you to understand (as the doctors don't really seem to understand). Just sharing what I think I understand them to be saying. This isn't new but apparently it isn't over either. Oh well, I'll just climb this dune & see what we see when I get to the top of it.

As always, thanks for caring.

Love,

Mary

Coming of Age with Harry Potter

About two weeks before Sam was born, the first novel in the Harry Potter series was released (in the UK.

It didn't make it here until after he'd turned one).

I didn't think I was interested. I didn't think I cared. But, at some point, when Sam was three & we were living in St. Louis, I decided to find out what all the hubbub was about & read Harry Potter & the Sorcerer's Stone (I).

The movie by the same name was released just before Thanksgiving when Sam was four. Somehow, he & I ended up seeing it at the movie theater with my parents. I think we all thought it was a kids' movie. While there were very scary parts, because I had read the book, I could assure Sam, "They can't kill Harry Potter," and we made it through.

The second movie, The Chamber of Secrets (II), came out a year later (when we were living in Iowa). I'd spent that year as a single mom, at a new job (the biggest job of my advertising career) & hadn't gotten around to reading the second book.

One Friday night, after a long week of school & work (Sam was in kinder-
garten now), I took him to see the movie. This is the one where they introduce the giant spiders.

It was a bit much. Sam was covering his eyes & saying, "I want to go home."

When it looked like Harry was about to be killed by a basilisk (&, because I had not read this book, I could no longer reassure him), we left.

The next morning, I was telling a friend about how we'd had to leave before the end of the movie. Sam said he wanted to try again. I figured if he was up for it it would be better to make it through than to leave it hanging over our heads. We took our neighbor, Sam's friend, a little boy named Jon (who is a year younger than Sam) with us. This time, in the daytime, we made it through. Thankfully, so did Harry.

Previously, Sam had seen Lord of the Rings - The Fellowship of the Ring (albeit on a small screen, in small doses, in the daytime, at home). And, a month later, he made it through Lord of the Rings - The Twin Towers.

When I wondered out loud about why, my brother hypo-
thesized that the "good guys" & "bad guys" were more clearly defined in LOTR & that maybe kids in peril, kids (Tom Riddle) out to get other kids was what was upsetting to Sam about the Chamber of Secrets.

While we were waiting for the next movie to come out, our friend, Janice introduced us to the audio books narrated by Jim Dale. We started listening to them & over the course of the next several years, we listened to The Prisoner of Azkaban, The Goblet of Fire, Order of the Phoenix, Half-Blood Prince & Deathly Hallows together. We enjoyed them a lot.

Sam was almost seven years old when the third movie was released. (I'm not sure how many of the audio books we'd made it through at that point.)

We'd moved to Chicago & were a family with Cameron by then. The three of us went together to see The Prisoner of Azkaban (III). We were introduced to Sirius Black in this movie. I remember us enjoying it very much.

Sam was eight when The Goblet of Fire (IV) movie was released. The three of us must have seen this one in Chicago too. I didn't remember much about it off the top of my head but see it is the one with where they have the Triwizard Tournament.

It is also the one in which Cedric Diggory is killed & Harry & Voldemort face-off in a grave-
yard.

The release of The Order of the Phoenix (V) lined up nicely with Sam's 10th birthday. We'd lived in California for about a year at the time. We incorporated a viewing of the movie into our plans for his birthday party.

Harry & his friends start Dumbledore's Army & fly on thestrals to a fight at the Ministry in this one.

The Half-Blood Prince movie (VI) came out almost exactly on Sam's 12th birthday. However, we were at a family reunion in NW Washington at the time. We waited to watch the movie until we returned home so we could watch it with Cam. (He'd had to leave the reunion before us.)

Because we knew the story, we kept telling Cam, "You won't believe what happens in this one." (We celebrated Sam's birthday a few weeks later.)

The next year, between our trip to the Midwest & a series of visits by family & friends, Sam managed to turn 13 w/o a party. So, when The Deathly Hallows - Part I (Movie VII) came out, it seemed like the perfect opportunity to have an unbirthday party.

This year, "the epic conclusion of the world-
wide pheno-
menon," Deathly Hallows -Part II, (Movie IIIV) is being released the day before Sam fourteenth birthday. So, we're building it into a party again.

It has been neat watching Sam come of age alongside this coming of age story.

We're excited to watch the finale.

(Although, I'm even more excited to see what the focus of Sam's birthday party will be next year.)

My Requests for Lyle Lovett

Tonight, Cam's taking me to see Lyle Lovett. I'm compiling a wish list of songs I'd love to hear him play & thought I'd share my requests with you.


If I had a Boat - "If I had a boat, I'd go out on the ocean. If I had a pony, I'd ride him on my boat. And we could all together, go out on the ocean. Me upon my pony on my boat."


Bears - "So, meet a bear & take him on out to lunch w/you, even though your friends may stop & stare... It just don't come not better than a bear."


LA County - "And the lights of LA County, looked like diamonds in the sky."


Fiona Live (Clip) - "Way down yonder, on the bayou, there lives a little girl-o..." "Ehhhh! "Oh you better not cross her. You try to boss her. Then, you better duck mister. Here come a cup & saucer." "Eh-ee-ehh!"


She's Already Made Up Her Mind - "She said something about going home. She said something about needing to spend some time alone. And she wondered out loud what it was she had to find. But she'd already made up her mind."

"There is nothing so deep as the ocean. And there is nothing so high as the sky. And there's nothing unwavering as a woman when she's already made up her mind."

La to the Left - "My mother was good to me. How in else could she be?"

Old Friend - "Put your head down on my pillow & put your hand on me & hold on. Hold on."

Flyswatter/Ice Water - "With you here to guide me, I cannot fail."

Just the Morning - "There's nothing here to be afraid of, it's just the morning."

Private Conversation (Clip) - "That man she left behind her was 2000 miles away..." "Ehhhh!"

Smile - "Smile, though your heart is aching. Smile, even though it's breaking. When there are clouds in the sky. You'll get by."

North Dakota - "If you love me, say, 'I love you.'" "If you love me, take my hand."

I love many of his other songs too but these are some of my favorites. Maybe, after tonight, I"ll have some new favorites.

This One's Personal.

Last Sunday, after what I thought had been a long day, I returned home from taking a walk with a friend to hear that a tornado had struck somewhere in Missouri.

This was concerning as I have family & friends in Missouri. I asked Cameron, which town(s) had been hit. When he said, Joplin, Missouri I was stunned into silence.

Joplin is less than 30 miles from Columbus, Kansas, the town that was my home from the age of 5 to 17. Since my town was very small, we would go to Joplin often, whenever we wanted to see a movie or hang out at the mall.

While my family moved away from the area over 20 years ago, through Facebook, I stay in touch with several friends from the area.

From a distance, I am sure it is impossible for us to comprehend what they have been dealing with but I thought I'd share some of what I've learned, some of what has made this disaster personal.

Thankfully, the people I know best seem to have been spared; however, many of them know people who have been personally devastated.

My friends experienced scary storms, during at least one, they were pounded by baseball-sized hail. After the tornado hit Joplin, several of my friends were incredibly worried about their loved ones who were in harm's way then out-of-touch &/or missing for a time.

Many of the people I care about have people close to them whose homes were destroyed. My friend, Susan's sister's family's home is gone. The father of our high school class president was also destroyed. Meredith's friend lost her home. My friend, Laura's friend's mom lost her house.

My friend, Heather said her brother-in-law's house & the high school she attended have been destroyed. My friend, Chris saw the neighborhood where his grandparents used to live destroyed. (Last I knew, they hadn't heard from the neighbors.)

My friend, Holly's sister's family's house was damaged but is still standing. Romel stood in line to get a permit to fix the damage to his property. My friend, Michelle thought her husband had lost his job when one semi truck was thrown onto the truck he normally drives. (Thankfully, the company has been able to operate out of a different location.)

As devastating as this loss of property has been, the people I know were all relieved to hear their loved ones had survived. Others were not so fortunate.

Some people I know know people who have lost loved ones. My friend, Lori's son's teacher's father was killed. My friend, Stephanie's friend's 16-year-old stepdaughter died during the storm. I can't imagine the heartbreak they must be feeling.

I think I read this was the deadliest tornado in more than 50 years. I know I read about people at the local hospital whose IVs were torn from their arms during the storm & about how people in St. John's hospital’s emergency room, waiting for treatment, were pulled through hospital windows. Unimaginable.

However, there is light in the darkness. I'm incredibly proud of my friends who have been working hard to make things better. My friend, Susan, a nurse who works at Mercy hospital in Joplin (but who was not working at the time) has been providing medical care & treatment to patients in the basement of Memorial Hall (a place I used to go to to see concerts) which has been turned into a remote medical triage center.

My friend, Aron, who is home on leave from active military service, helped distribute truckloads full of water. My friend, Derek, a former Cherokee County sheriff pulled out his old uniform to assist with the rescues. My friend, Jason returned to service with the Joplin Fire Department's Search & Rescue Team.

My friend, Hilary has been trying to find a place for her mom to continue getting her dialysis treatments. My friend, Hollie who was recently elected to the Columbus City Council has been monitoring subsequent storms & responding to the understandably jittery reactions.

I'm not sure what I can do from here other than let them know I care & make a donation to the American Red Cross to support the efforts of those on the ground in Joplin. I can share the stories I've heard and ask you to please join me in offering support, relief & care to those who have been hit so hard & in offering thanks to those who are there making a difference.

Feel free to share these stories with others you think would want to help too (http://marymaddux.blogspot.com/2011/05/this-ones-personal.html). Thanks so much.

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.