The road ahead.

Indolent - My New Favorite Word

2012-01-09T12:45:00.000-08:00

I just wrote a message to a friend of my friend, Michael. In it, I included a quick health recap. Thought I'd share it with you too, in case you were wondering where things stand.

Hello! I'm sorry to have disappeared for awhile. I knew you were going to be away until around 10/10. I wasn't feeling well then & in mid-October, I ended up in the hospital for an infection & had to have my third bone marrow biopsy.

They were saying they thought the problem w/my immune system was getting worse, moving from Neutropenia to Aplastic Anemia. In November, a specialist at Stanford said I would probably need a bone marrow biopsy. I FREAKED OUT.

We had family here for 10 days around Thanksgiving. During their visit, on 12/1, I flew to Seattle to see a hematologist who has spent 40 years studying what he called my "special hematological condition." He said even really well-trained hematologists don't understand it because it is so rare. He said he didn't think I was getting Aplastic Anemia & didn't think I would need a bone marrow transplant. We were hopeful.

Then, he sort of disappeared for awhile. We're still waiting for him to contact my local hematologist w/conclusions/recommendations. I did hear from him, about a week ago. He said he'd reviewed everything & asked which doctor he should contact. (He also asked if he could have another doctor look at my bone marrow biopsy slides but didn't say why. Of course, I gave consent.)

So, hopefully, things are alright. In early December, the Seattle specialist said Neutropenia still appeared to be the dominant problem. He said he thought I may have something called LGL Syndrome (Large Granular Lymphocyte Syndrome).

When I shared this with my local hematologist, he said, "Oh, yeah." "They think you do have LGL." I was surprised, as this wasn't something I remembered hearing before. We looked back at the report from my first bone marrow biopsy, from September of 2009. It said, these findings point to the differential diagnosis of LGL; however, these things, including the absence of large granular lymphocytes argues against this diagnosis.

My primary care physician has a called LGL a "chronic indolent blood disorder." While I'd rather not have a chronic blood disorder at all, indolent is my new favorite word.

The word indolent has two meanings, both related.

In one sense, indolent means lazy, lethargic or idle.
When applied to a medical situation, indolent can mean a problem that causes no pain, or is slow growing and not immediately problematic.

Still waiting for a definitive answer. Still taking it one day at a time. Feeling really good, very healthy today.

Jamie Oliver's Asian Noodle Broth

2011-12-17T08:33:00.000-08:00

Last night, we tried another recipe from Jamie Oliver's Food Revolution. I enjoyed it very much & wanted to share it with you but couldn't find a good link to the recipe, so I decided to type it up.

Jamie calls his Asian Chicken Noodle Broth & that's what the guys had but we made two soups last night, one with veggie broth & tofu for me. Yum.

Let me know if you try it too.

Jamie says you can make it in 17 minutes (if you can multitask). We never work as quickly as him.

He says, "This is a really quick dish but you're going to have to multitask, cooking your veg & noodles in one pan & your chicken in another. Read through the recipe before you start so you'll be prepared for what's going to happen. You'll be amazed at the results - just like something you can get in a posh noodle bar." (True.)

serves 2 (we doubled it so each version served 2)

1 Tablespoon mixed seeds (pumpkin, poppy, sunflower) - we used all three & some sesame
a small handful of raw cashew nuts
1 quart chicken broth, preferably organic (or organic veggie broth)
2 skinless chicken breast fillets, preferably free-range, organic
(We asked the butcher to slice them into strips.)
Or one 10 oz pkg of Super Firm tofu, cut into strips (I like Wildwood.)
2 teaspoons five-spice powder (I wasn't sure how I was supposed to know which five spices he meant but the guys at the meat counter said there was a spice called five-spice powder. Sure enough, in the spice isle, there it was.)
sea salt & freshly ground black pepper
olive oil
a thumb-sized piece of fresh root ginger
1/2 - 1 fresh red chile, to your taste (We ended up sharing one.)
4 ounces rice sticks or vermicelli (We didn't see these particular noodles at our store, ended up buying something called Chinese Noodles that worked great.)
a handful of snow peas
6 thin asparagus spears or 4 regular-sized spears (We split a bunch.)
6 fresh baby corn or 1/2 cup fresh corn kernels (There was no fresh corn at the store this time of year. I was going to use frozen corn kernels but then saw a can of baby corn & used that instead.)
soy sauce
juice of 1 lime
a small handful of spinach leaves

Put a medium frying pan or wok on a high head and add the seeds & cashew nuts to it straight away. (We let the cashews cook a little before adding the smaller seeds so they wouldn't burn.) While it is heating up, put a large saucepan on high heat. Fill the saucepan with the chicken (or veggie) broth, heat until very hot, and put a lid on it. (Next time, we will do this step later, after cooking the chicken/tofu.) Toss the seeds & nuts around until heated through nicely - this will take a couple of minutes.

While this is happening, slice your chicken breasts lengthways into 3 pieces & put them into a bowl. (Or slice your tofu.) Sprinkel the chicken (or tofu) with the five-spice powder and a good pinch of salt & pepper and stir. When the seeds and nuts are done, transfer them to a plate. Put the empty pan back on a high heat. Add a little olive oil to your hot pan with your slices of chicken (or tofu) and cook for 5 minutes, until golden, tossing and turning every now and again.

While the chicken (or tofu) is cooking, peel and finely slice your ginger and slice your chile. Take the lid off the pan with the chicken (or veggie) broth and add half the chile, all the ginger, your rice sticks (or vermicelli) (or Chinese noodles), snow peas, asparagus, and corn with 2 Tablespoons of soy sauce. Bring to a boil and cook for 2 to 3 minutes, stiring. (If your noodles need to be cooked longer, add them first, adding the veggies with only 2-3 minutes of cooking time left. Our Chinese noodles were supposed to be done in 3 minutes, so we were able to add them at the same time as the veggies. We used a fork to separate the noodles.)

Halve the line & squeeze in the juice. By the time the rice sticks/vermicelli/noodles & veggies are done, the chicken (or tofu) will be cooked. Take a pice of chicken out & slice it lengthways to check it it's cooked all the way through. When done, remove all the chicken from the pan & slice each piece in half to expose the juicy chicken inside. Please don't be tempted to overcook it. (I loved my sauteed tofu, seasoned w/the five spice mix, salt & pepper & kept snacking on it while working on the veggies. I broke the strips up to show the white inside.)

To serve, divide the spinach leaves between your bowls and pour over the broth, rice sticks/vermicelli/noodles, and vegetables. (Our asparagus sunk to the bottom. We had to search of it.) Divide the chicken (or tofu) pieces over and scatter with the toasted seeds, cashews, and remaining chile.

Enjoy.

Colleen Creegan - Champion for Women's Rights

2011-11-19T16:40:00.001-08:00

Our family's dear friend, Colleen Creegan, is a grad student at NYU, pursuing a master’s degree in Global Affairs. (She is also Leo's sister and Linda's daughter.)

This winter, she will spend three weeks in Kigali, Rwanda, participating in a Young Leaders HumanRights Delegation, throughGlobal Youth Connect.

She will workin collaboration with Rwandan young adults to raise awareness of and advocatefor Human Rights, both regionally and globally.

Herpersonal area of interest is in Women’s Health and Re-
productive Rights.

She willbe partnering with Health Development Initiative, a local health advocacy organization, to improve the current family-planning situation inRwanda.

She is interested in ending the unsafe, unregulated and illegaloperations that are happening everyday worldwide by protecting every woman’ssexual sovereignty. How? In part, by decriminalizing abortions but also by promotingfemale education, increasing male and female contraceptive use, financiallyempowering women, ending sex trafficking, ending preventable maternal mortality,persecuting and convicting every genre of rapist and sexually based warcriminal...

So that she may be a member of the growing movement that speaks forwomen worldwide, she needs a team, a team of supporters. Please consider making a donation.

If you are unable to contribute but want to be involved, she asks that you tell your friends, post on Facebook oryour blog, tweet, send smoke signals and stay in touch with her at Colleeninaction@gmail.com.

Colleen, I, and the women she will help thank you.

He Wasn't Having Any Fun

2011-11-19T15:35:00.001-08:00

While we were waiting outside, for a seat to open up, in the restaurant, I was heartbroken by one panhandler who seems to be having an incredibly difficult life.

We'd just walked through Union Square, past a giant Christmas tree. Nearby, people were ice skating. We'd passed a Starbucks, a Macy's, Saks Fifth Avenue, Tiffany & Co., billboards for Niketown, and the iPad2. Meanwhile, this man slowly shuffled along, hunched over, in his wheelchair, with an empty cup in his lap, too downtrodden even to hold up his head.

He knows we won't meet his gaze or do anything to help. It sickens me. It also reminded me of another man, in a different town, on an earlier holiday. It shouldn't be this way.

On the way back to our car, we were stopped by man who said he was with the Fun Patrol, somehow affiliated with the SF Police & that they were collecting donations for a local soup kitchen. I was happy to be able to make a small donation but wish I could do more.

Ten for Joplin - Helping Neighbors Rebuild

2011-11-12T08:25:00.001-08:00

Proudof my dad, Bill Powell, and others from his Rotary group, whotraveled to Joplin, early this morning, for their second day of volunteeringwith Habitat for Humanity teams there, as part of Ten for Joplin.

This home-building blitz provides an opportunity for those in surroundingcommunities to contribute their time and money to help their neighbors in need.

Aftervolunteering on Thursday, 11/10/11, he traveled home to put up & takedown flags, on Veteran's Day, with the Rotary group. That night, he said,"The body is sore but the work was good... Building houses againtomorrow." ~ Dad

One of the people who traveled withmy dad, on Thursday, wrote, "The three of us worked in Habitat House #3,at 2209 Kentucky, about three blocks west of the Joplin High School, where noclean-up has occurred. Although we arrived on a frosty morning, preparedto work in the cold, we spent the day inside a heated house with only occasionaltrips outside for tools. Bill did spend a lot of time at an outdoorsaw but as least it was on the sunny side of the house."

"The Habitat people were veryorganized from our arrival until we departed. Just as we were ready toleave the owner arrived for an inspection visit and we were able to meethim."

Uncle Joe - My Dad's Brother

2011-11-11T15:01:00.001-08:00

Joseph Vernon Powell was – and still is - my brother. We shared a specialrelationship. While he was 16 months older than me, we both, from time to time,were called upon to help – to protect each other. When I was hurt, he felt mypain. When he was being teased at the playground at Grandview Elementary schoolbecause of his birthmark, I cried, but was too little or too afraid of thewrath of those evil bullies to do anything to ease – to end his pain.

Once, it must have been when I was 3 years old, Joe was in the hospital andI was called upon to give him my brand new, bright, red fire truck, to play with,in the hospital. At 3 years old, we don’t understand these things, but I was soglad when he came home from the hospital that I never asked about the bright,red fire engine. Having Joe home was far more important than a toy.

Joe paved the way and blazed trails for me all of our lives. In fact, Iblame him for a story we’ve heard all our lives. Sometime shortly after Joe hadgotten home from the hospital, we somehow moved a very large and very heavy,metal bunk bed set across the room and made a fort to play under. Years later,and often only after a few drinks, adults would add gross details about thestinky and unsanitary mess we smeared on the walls to keep the evil ones awayfrom this, our special fort.

While Joe paved the way and blazed many a trail for me, he was not always theone that caused, or even came up with the things that we did - with the messeswe made and the punishments we received. No doubt, he was purely angelic thatSaturday morning when we got into a fight and managed to break both his and mybrand new eyeglasses. We feared and had fully earned the punishment and mayhemthat followed when our Mom and Dad saw what we had done.

Joe taught me to ride a bicycle and together we would roar down a gravelroad and across an open field. We were free from parental oversight for a fewminutes. We had escaped into a pretend land. Sometimes, we were mountain menexploring the Wild West on our stallions. Sometimes, we were cavalry chasingrenegade Indians. Sometimes, we were soldiers charging an unseen but everpresent enemy.

With Joe, being just boys was never enough. Joe had ridden these bicycletrails many times. Joe had already blazed these bike trails. He had gone downthe road before and he knew where the dangers were and how to avoid them. Joewas my brother and even though we fought over little things, and sometimes wefought just for the fun of fighting, he was always ready to protect me.

When we were given large jobs to do, Joe always found ways to make work morefun. Of course, sometimes, having fun would also mean we were doing somethingthat would get us in trouble later.

When we were sent out to pick up rotting pears, we’d dawdle around. Then,instead of picking up pears, we’d play with the toy soldiers Joe always had inhis pockets. No one knew then that he’d later give his entire life to militaryservice and to the veterans and wounded warriors about whom he cared so deeply.

But, when we were little, Joe and I couldn’t just pick up the rotting pears.Instead, we’d pick up a few, stomp on a few, and then we’d very carefully holdthem in one hand and yank out the stems, as if they were the pins of handgrenades.

After we’d successfully used these rotten pears to drive off all ourimaginary enemies, we'd begin pummeling each other with the most rotten pears wecould find. But, due to his wisdom and experience, when we were bored with thepears, we found, nearby, even more powerful weapons. Joe taught me that rottenpears were nothing compared to the long lasting and biting stench of a rottentomato carefully thrown to land just under a brother’s nose.

Joe was ahead of me in school. He paved the way and blazed trails for metime and time again. The teachers he had, somehow, expected me to be as smart asJoe. I never matched his intelligence, his wisdom, or the understanding he hadof philosophy.

Joe excelled in high school ROTC. He paved the way, he blazed trails for mein ROTC. He taught me how to read a topographical map. He taught me how to usea lensatic compass. He showed me how to shine brass, how to iron wool uniforms,and how to do close order drill. At that age, we didn’t fight anymore, but wedid practice what he’d learned about hand-to-hand combat.

Outside or inside, it didn’t matter to us. We’d practice the one man carry.We’d practice bayonet: thrusts and parries, and blocking moves. But, the mostfun was taking turns with hip throws, leg sweeps, and the other moves welearned in ROTC and in Judo class.

Joe taught me about marksmanship. While we were little, he dared me to use aBB gun and shoot the buttons of shirts hanging on the clothesline. He showed mehow to shoot a mud dauber with a BB gun. Joe had shown me the path to greatmarksmanship.

Because of Joe's teaching, before I ever heard my first screaming drillsergeant, Joe had taught me how to obtain and maintain a sharp sight picture.It was Joe who taught me that while shooting I always had to go through theprocess of: breathe, relax, aim, slack and, only then, gently squeeze the triggerof a rifle or pistol.

Joe left home and joined the U.S. Army, after high school. He stopped back, inhis uniform, after Basic Training, and between his assignments. I would see him,from time to time, but sadly we did not keep in touch, as we should have. Heserved his country in foreign deployment after foreign deployment. He faceddangers and horrors about which he never told any of his family.

Joe paved the way and blazed trails. He dedicated his entire life for youand for all of us. When he finished his military career he had a burning desireto help those, who, like he, had become wounded warriors.

He knew, because of the trails he had blazed, the ways he had traveled, andthe post-traumatic stress that he had endured that he could help those whofollowed in his footsteps. After retirement, he used his superior intellect andhe quickly finished his undergraduate requirements, studied hard and earned hisMaster’s degree in Social Work.

Joe was special. His experience had given him a perspective and a depth ofunderstanding those he served could just sense. Joe had faced, time and timeagain, the horror that is war. He had fought and learned to deal with the everpresent memories of Post-Traumatic Stress. Once again, Joe was paving the way,blazing safe trails for those who came after him.

As Joe’s military career continued, he and I, for no good reason, never keptin close contact. That was my loss. Folks, we all know that when Joe wasserious, we could tell. I remember him, from time to time, saying, “Listen up,and pay attention. What I am telling you is not BS."

So, folks, now that Joe is not here to say it, I’ll say it, "Listen up,pay attention. This is not BS." Let me tell you, if you have brother or sister, never, never lose touch with them. Reconnecting later in life is good,but it’s not the same. Spend time with them before they are suddenly diagnosedwith a terminal illness. As a trained therapist, Joe would, no doubt, challenge– dare you - to leave here, this morning, committed to face your fears, toovercome them and to embrace life and love.

Joe paved the way and blazed, for me, a trail, in Vietnam. I will neverforget getting a letter from him, while we were both in Vietnam, telling me tocome and see him. I will never forget walking into his supply depot, in Pleiku,Vietnam. I will never forget having coffee with First Sergeant Joseph Powell,thousands and thousands of miles away from here. I will never forget as he toldme that since he had returned to Vietnam I didn’t have to stay in Vietnam anylonger.

Joe’s return to danger paved for me a path to return to the good ole USA. Iwill never forget listening to Joe as he told me that he was much safer as asupply sergeant than I was as an Infantry Platoon leader, going out into thebush, day after day, on “search and destroy” missions.

I will never forget when Joe shoved an already signed U.S. Army form acrossthe table, releasing his right to be transferred back to the US, to me. I willnever forget when Joe stood up and said, “Now get your ass back to your unit,fill out the rest of this form and get the hell out of Vietnam."

Thank you. Thank you, Brother Joe. Once again, you prepared the way. Thistime, you saved my life.

Joe, I wish that I could have done the same for you, as you lay there, inthat hospital bed, and at Rosewood. When you called out and said, “I am going todie. I don’t want to die. Bill, make it go away," I could do nothing butpray and cry.

As the horrible brain tumor was eating away at Joe, my brother that hadalways blazed trails for me and had always paved the way, I could do nothing. Icould remind him of the fun and mayhem we had caused as kids. I could remindhim of the rotten pears. And, yes, when he laid there in that hospital bed andasked me to pull his finger, I did. Then, a sly smile would come to his faceand the odor of the room changed.

Oh, I so wish I could have done more for you, Joe. I could not blaze thetrail for you, or pave the way for you. I could do nothing to save you, Joe. Icould not even go with you. Joe, I am so sorry that I could not ease thestruggle of this, your last and hardest, battle.

But, I know, deep down inside of my soul, when I, like you, lie on myhospital bed, when I, see the bright light, and when I see angels coming forme, you will have, once again, gone before me to prepare the way.

Thank you for being my brother. - Brother Bill

MSG (Ret.) Joseph Vernon Powell - Obituary

2011-11-11T15:00:00.001-08:00

MSG (Ret.) Joseph Vernon Powell, 67, passed away at a Killeen nursing home,August 29, 2011. Mr. Powell was born April 27, 1944, to Vincent and Mary Powellin Kansas City, Missouri. He married Somjit Boonpan on April 10, 1972 atthe American Embassy in Bangkok, Thailand.

Mr. Powell retired from the U. S. Army in 1991 as a Master Sergeant. He served during the Vietnam conflict and received the Meritorious ServiceMedal, Army Commendation Medal with 5 Oak Leaf Clusters, Good Conduct Medal (8^thaward), National Defense Service Medal, Vietnam Service Medal with 2 silver and2 bronze service stars, Army Service Ribbon, Overseas Service Ribbon Numeral 6,Republic of Vietnam Campaign Medal, Republic of Vietnam Gallantry Cross UnitCitation Badge with Palm, Expert Rifle Badge, and the Army Achievement Medal.

Mr. Powell was deeply committed to his fellow service members, especially tothose who had faced and were struggling to deal with Post-Traumatic Stress.Following his retirement from the U.S. Army, Mr. Powell completed hisbachelors’ degree and then completed a Masters in Social Work (MSW). He thencommitted the rest of his professional life to working with veterans andWounded Warriors at the Austin Vet Center.

Mr. Powell is preceded in death by his parents, one daughter, TassaneeCarver, and a sister, Cathy Wilson.

Survivors include his wife of 39 years, Somjit; one daughter, Varnee Baney;one son, Sakda Powell; five brothers, Jerry Powell of Raleigh, NC; Bill Powellof Bella Vista, AR; Brian Powell of Los Fresnos, TX; Mike Powell of Fresno, CA;Patrick Powell, of Tijuana, Mexico; two sisters, Alice Pita of Houston; TX; andMaria Norton of Logan, UT; one granddaughter, Kathleen Kile of Virginia andChawarat Boonpan of Thailand.

In lieu of flowers, please makedonations to the Wounded Warrior Project, donorservices@woundedwarriorproject.org– or call 877-832-6997.

Master Sergeant Joseph Vernon Powell - Remembered

2011-11-11T14:56:00.001-08:00

"I was really sorry to hear of Joe’s passing. The Viet Nam vetsI referred to Joe were VERY selective as to who they would cooperatewith. Many of them had pretty much given up on the VA and society ingeneral, but he was able to reach those men, they just loved him. Godrest his soul, he will be missed." ~ Susan Lewis, Asst. Veterans ServiceOfficer, Travis Co. Veterans Services.

Words from His Beloved Veterans:

“We spent a lot of time together at the traveling walls. He was alwaysthere. We would spend all day together. I gave him a hat. He gave me a hat.” ~ Danny

"He was a patient man. He understood. He wasa great help. He was a man who wanted to help you. He would do his best tohelp. He will be deeply missed." ~ Rafelio

“To me, Joe was special. He had more influence than anyone in my life. Hegave me back my self-respect. He wouldn’t let me give up. He was a soldier’ssoldier. He knew his history. Joe always had a good joke, too.” ~ Tom

“Thank you for all you have done for us.” ~ Ron

“He was always there to help you understand whata person needed in help.” ~ Samuel

“Rest in Peace. You’re home now.” ~ Ron

“Joe, you were a great person. I will never, ever- forget you." ~ Manuel

“We will miss you, Joe, but we have wonderfulmemories we will carry with us.” ~ Clarence

"I never saw him as overbearing. He had alot of patience with people. He would bend over backwards for vets. He was notjudgmental." ~ Doug

“Joe, thank you for saving my life. If it hadn’t been for him pushing me tocome to the group, I wouldn’t be here today. He made time for me which wassomething I needed. Joe loved the Buffalo Soldiers—on behalf of the BuffaloSoldiers, we thank you.” ~ James

"He experienced what the people went throughand what they felt." ~ Roy

"I though a lot of Joe because he had beenwhere we had been. Those top sergeants kept us alive (in Vietnam) and I feltthat Joe did that here (Vet Center)." ~ David

“He always welcomed me to the Vet Center. He would always smile at me.”~ Raul

"When I first saw Joe, he was very committedto helping the vets. He said to me, 'Don't ever, ever give up.'

I am very appreciative for what he did forme." ~ Ruben

"The first time I saw him, he patted me onmy shoulder and told me that I had done a good job dealing with my PTSD. Thatmade me come back. He encouraged me." ~ Jose

"His presence was soothing. He was committedto one thing above all--the veteran. We have good memories of him." ~ Roman

"He would disregard his own pain to helpus." ~ Lawrence

"Joe - He was one of us." ~ Tony

"Our sincere condolences to the Powellfamily, you, and the veterans of the Austin Vet Center. Pleaseinform us of the services and wishes of the family. All are in ourprayers. Since the family is here in the Killeen area please let us knowif there is anything that we can do to assist them." ~ Lori A. Spencer, Office Manager, KelleenHeights Vet Center.

Comments provided from various Vets’ Centers bythose who served with and those served by Master Sergeant Joseph Vernon Powell.

Bone Marrow Transplant?

2011-11-08T08:51:00.001-08:00

So, the Stanford guy seems to have said I will probably need a bone marrow transplant. I'm still trying to wrap my head around the idea. It still seems pretty unreal & I guess it is unreal still, as they don't even have the report from my last bone marrow biopsy, yet.

He says my brother has a 1 in 4 chance of being a match & that they can collect bone marrow in a relatively pain-free way, similar to how they collect blood, these days.

He says a transplant could be curative. Or, it could kill me. Or, it could give me a condition that would negatively impact my quality of life forever. Not completely on board with the idea of letting them do more horribly invasive stuff just yet, especially because I basically feel fine now.

Aplastic Anemia?

2011-11-08T08:51:00.000-08:00

About noon, on Sunday, we got this treat from my hematologist, "The bone marrow biopsy appears to show Aplastic Anemia, but the results are not final."

We decided, rather than freaking out about it, we'd follow his directive to, "Have a great Halloween!"

Yesterday, he clarified that while I do have low red blood cell & platelet levels, they aren't scary low, the way my Neutrophil counts have been. The concern is that whatever has been keeping my Neutrophil counts low might be starting to impact my RBCs & Platelets too.

My doctor's never treated anyone with Aplastic Anemia & wants me to be treated by someone who has dealt with it before.

Today, I've been on the phone w/Stanford & UCSF. We're working on coming up with a plan.

Cam found this great, short video that does a good job explaining Aplastic Anemia, my new bad "A" words.

Convoluted Mess

2011-10-24T16:39:00.000-07:00

It has gotten to where I can't even keep the story straight anymore & it is my story. The doctors aren't keeping it straight, so please don't think I have any expectation that you should.

But, I do want to be honest about being scared & about needing encouragement &, so I want to try to catch you up if you are new to the story, or just aren't sure where things stand.

Here's a link to a health crisis recap I wrote in April of 2010, talking about stuff that started in August/September/October of 2009, the beginning of all this mess.

At that same time, I wrote two posts about a treatment I was about to try. Treatment Overview #1;
Treatment Overview #2

In those posts, I didn't tell you that the treatment involved infusing me with cells from a horse (ATG) & with another drug that is used in chemotherapy & given to people who have had organ transplants (Cyclosporine). On 5/23/10, I did say I was scared about it.

I had the treatment at the end of May.

On 6/10/10, unhappy about side effects (& in the midst of 'roid rage), I rant & rave at my doctor, "Your mother is a hamster."

On 7/12/10, Before a doctor's appointment, I wrote, "I am worried the doctor is going to tell me it is my fault that the treatment didn't work." That afternoon, I wrote about how I feel sorry for the doctors for having to deal with me. "Poor Dr. Lopez."

I was pretty quiet about things for awhile.

Then, in October of 2010, I shared with a new doctor that I was wondering if it was even a real thing. She said, that regardless of what other people saw or thought, it was important for me to know that what I am facing is real & that I do need an immune system & it is important for me to keep working towards making mine as strong as possible. (Chased by Trucks? - Health Update from 10/20/10)

In the meantime, I started having good numbers.

On 2/3/11, in preparation for an appointment with a specialist at UCSF, I shared this recap, in which, I wrote, "Since late September, my ANCs have consistently been above 1000. Three times, they were above 2300. (An ANC above 1500 is considered normal.) Most recently, my ANC was 2704!"

Since, things were looking great, at the time, the appointment with UCSF was pretty anti-climatic. Net was, "It appears the treatment has worked." On 2/7/11, I wrote, "Nothing Earth-Shattering from UCSF."

On 3/30/11, I went to back to see the surgeon who'd operated on me. He'd wanted to do a one-year, post-op follow-up. It ended up being about a year & a half after the surgery before I saw him. He wanted me to get a CT Scan to make sure everything was OK. We're still paying for that CT Scan but it did say everything looked OK. Here's what I wrote about something he said during that visit. "It wasn't a home run but we're still winning."

Because things had been looking so good in February, they didn't even check my blood for three months. When they checked it, at the end of May, it was much lower. "For those keeping score. ANC of 1100 called, Good. Fine."

As planned, the doctor allowed me to stop taking a medication I'd been on for a year at the end of May. When we checked my numbers at the end of June 2011, they'd plummeted. "Well, Crap. (ANC of 200)" On 6/23/11, I wrote, "This isn't new but apparently it isn't over either."

At that time, they asked me to try taking a medication I'd taken in the past w/varied results (Neupogen). It was supposed to increase my number of Neutrophils. We got my ANC up to 700 but that didn't seem like much of a boost.

On 7/11/11, I wrote, "They want me to try taking Cyclosporine again." This was the medication I'd been on for a year. I'd been taking it when I had good numbers for eight months but it was part of a treatment involving other medications. My doctor didn't want to put me back in the hospital or give me those other medications if we didn't have to.

I took the medication (Cyclosporine) for several weeks but it didn't seem to be able to work any magic by itself. In July, my counts ranged from 100-300.

Despite these scary numbers, the doctor had started saying I was, "fine." He said I wasn't going to get something I couldn't fight.

In August, I said, if I was fine, could they just leave me alone, please? They said, "OK."

Then, in September, I got sick. I didn't even really realize I was sick until, suddenly, I was very sick & calling the doctors for help. On 10/9, they put me on antibiotics.

On, 10/10/11, they checked my ANC & this time, it was zero. I'd never hit zero before.

They put me back on the medication they hoped would boost my cells (Neupogen). After a couple of shots, on 10/14/11, my ANC was still zero.

A few shots later & they checked again. When he got the results, on 10/17/11, my doctor told me I had one Neutrophil.

Today, I got the paperwork from that day & see that the one he was referring to was the fact that only one percent of my white blood cells were Neutrophils. (Not great considering 50-75% of my WBCs are supposed to be Neutrophils but, my ANC was actually 26, a bit better than zero or one.)

On 10/19/11, I was invited to see a doctor who specializes in Neutropenia. I have an appointment with him on 12/1, in Seattle.

This morning, after week more of shots, they checked my levels again. This time, the doctor said, "WBC is 2.1 (it should be 4-11) with 100 Neutrophils (they should be 1500). You have also developed anemia, which is unexplained. It is time for another bone marrow biopsy. This can be done by me, or the doctor in Seattle. Let me know what works for you."

I wrote,
Today, the hematologist said, "It is time for another bone marrow biopsy."
That'll be #3.
Poop.

I know this is a convoluted mess but it is the best I could do, right now. I hope it helps explain things to those of you who are new & brings those of you who have been following along up to speed. As always, thanks for caring.

Gonna go play w/Sam now.

Love,
Mary

Leaving Michael

2011-09-10T05:55:00.000-07:00

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

2011-09-09T11:07:00.000-07:00

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

2011-08-30T16:22:00.000-07:00

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.

2011-07-11T17:23:00.000-07:00

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)

2011-06-23T07:44:00.001-07:00

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

2011-06-16T16:20:00.000-07:00

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

2011-06-09T15:55:00.001-07:00

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.

2011-05-29T06:35:00.000-07:00

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

2010-12-31T23:06:00.000-08:00

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

2010-04-30T10:34:00.000-07:00

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

2010-04-30T09:31:00.000-07:00

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

2010-04-30T08:04:00.002-07:00

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.

Chapter 4 - Trip to the ER. First Hospital Stay.

2009-10-04T12:19:00.000-07:00

Yesterday afternoon, before the wind became brutal, I had fun flying kites with Sam and my folks.

Later, we went out for yummy pizza with Cam.

I've been enjoying the sunshine today and am glad I got to play Qwirkle with my mom & Sam this morning. While he and I played respectably, she came from behind and destroyed us. Now, my mom & Sam are at Discovery Days at the Romberg Tiburon Center for Environmental Studies.

Cam and my dad are at the 49ers game. I have a little time to write.

I woke up in the night last night around 2am and almost got up to work on finishing the story but decided to stay in bed and ended up sleeping which I figure everyone would prefer.

Thanks for allowing me to be so self-absorbed while I process everything. I feel like a brat when I feel sorry for myself because I am so loved and have so many blessings and this is supposed to be treatable and everything but Cam listened to me cry this morning about how I don't want it.

I want to be done feeling bad rather than walking into a procedure which sounds really invasive and will leave me with a wound. According to the surgeon, I will be sore for a month and will have to avoid strenuous activity for three months. I'd rather not. I'd rather just be well but this is where we are. Thanks again for caring.

So, how did we get here? On Tuesday, 9/22, the hematologist was concerned by my blood work from the previous week. I implored him to look at my blood work from the day before before insisting I go into the hospital. I told him how much better I was feeling and hoped that would be reflected in the blood they'd just taken from me. He agreed to get those results and give me a call back. When he called that afternoon, he said my levels were still very concerning. I think he may have said they were the lowest levels he'd seen. He really thought I should go to the emergency room.

I spent some time checking with my insurance to see which hospitals were in our network to make sure I could be admitted into the hospital affiliated with the emergency room I would visit as the hematologist said he thought I would have to be in the hospital for a few days until they figured things out.

I chose to go to the ER affiliated w/the hospital affiliated with the hematologist who was sending me to the hospital. Once I knew where I was going, I also arranged to have all of my blood work sent to that ER. I didn't want to show up and have them act like it was unnecessary. I still remember the first time I went to the hospital when I was pregnant with Sam how they told me, "You don't look like you are in labor."

When I arrived at this emergency room, they did look at me with that, "Why are you here" face but once they looked at my blood work (and took more) they were saying things like my levels were "critically low" and that it was an emergency. The doctor on call with my medical group came in, said something was attacking my bone marrow, started tossing around the word Leukemia and saying how I would likely have a bone marrow biopsy the following day. I started to get scared.

I guess Cam had read more than I had about the reasons someone might have very low neutrophil levels and was already concerned about this possibility but I wasn't until then. Up until that point, I thought all of the wacky blood work was a result of the infections I'd been fighting and once we fixed those, my blood would return to normal. My doctor was testing my blood for scary sounding things but she kept sounding like she didn't think I had those things and that we were just ruling them out. This was the first time someone sounded like they expected I had something scary sounding. I didn't know much about what it meant to have a bone marrow biopsy but it sounded like it was going to hurt.

Despite looming threats that I might have a scary illness and would most likely have a painful procedure ahead, the thing that was bothering me most was what I now think is called a peripheral intravenous catheter. I called it a needle stuck in my arm. The nurse who inserted it explained that it wasn't a needle but a tube. Regardless, without talking with me first about what they were doing or why, they had stuck something into my arm, without asking permission and they wouldn't take it out. It made me angry. I didn't want it and didn't know why I needed it and I wanted it out. One doctor listened but another said it was necessary as they expected I would be getting antibiotics via an IV.

They took an x-ray of my chest then brought me into my hospital room. Cameron and Sam had been with me but ran out to grab some dinner for all of us. Then, around 9pm, they headed out. Sam had school the next day and had been out of school for several days already (one because of family visiting, two for the weekend and two for teacher in-service days).

I called my parents to talk with them about what was happening. I cried to them about how my day and outlook on things had been turned upside down in that emergency room. They acknowledged that it sounded scary and upsetting. My mom said I sounded tired and encouraged me to sleep. I was waiting for them to come hook me up to the IV (and give me some medicine to help me feel better about the whole situation which had created a lot of anxiety all of a sudden). I didn't want to go to sleep yet. I called my brother who also listened to me cry and joked about how he wished he were there to make people do things for me and make them listen.

Finally, the really nice male nurse came back into the room to get me set up. He asked questions like he was starting from scratch and I didn't understand why the information I'd shared in the ER downstairs hadn't been given to him but it hadn't. I repeated my story for him. Finally, I was ready to rest. I woke up that night at 1:30am and again at 4:30am. Then, I slept until 9:30am when I met the hospitalist, an internal medicine doctor who would be responsible for my treatment while I was in the hospital. He listened to me express my new found anxiety and discomfort and displeasure and agreed to do what he could to make things as comfortable for me as possible.

Cameron had canceled his classes and showed up in time to hear the hospitalist say that he wasn't sure I had Leukemia. I don't even remember exactly why he thought it was legitimate to say this to us but he said that if I had Leukemia, he'd expect some other levels to look different than they looked. I tried not to pin too much hope on this perspective but it was somewhat comforting.

To make me feel better, Cameron had brought a big, floppy stuffed dog that his mom sent as a present for Sam. I did hold and snuggle that dog sometimes during my stay. he also brought some framed photos and a ceramic turtle for the little table I faced from my hospital bed. Those little touches meant a lot. We hugged lots, cried some and I rested a bit.

Shortly after noon, the hematologist came by to do the bone marrow biopsy. He was calm but straightforward and expressed what he saw as the very real possibility that I might have Leukemia. He explained the procedure and while it sounded fairly awful he said that he would make the area numb and that the only think I would likely feel was the shot to numb things and then some pressure for a few minutes. He said the whole thing should only take about 10 minutes.

Since I'd had time to prepare for the procedure, was rested, was medicated, was supported and knew it would be over soon and sounded necessary, I was ready. As ready as you can be for something like that I guess. Cameron held my hand the whole time. I did squeeze his hand quite a few times but mostly in a clenching, "I'm scared" sort of way, rather than a wrenching "this really hurts sort of way." (I remember giving at least one of those when Sam was born.)

When it was over, I posted, "When I wrote about new experiences ahead, I had no idea one would be a bone marrow biopsy. It's over and was tolerable with Cam holding my hand. Now we wait." Cam had made arrangements for Sam to spend the night at his friend Leo's house that night so he could spend the night with me. I'm very thankful he was able to be there and that Sam was with our good friends.

That afternoon, while Cam was out getting some approved snacks for me and some lunch food for himself, Erika, a friend of mine from CASA, stopped by. It was really nice to see her. I greatly appreciated her caring. She could only stay a short while but offered to come by the next night and bring dinner. It was such a lovely offer, I said, "Great."

That evening, to pass the time, Cam & I watched the Clint Eastwood movie, Gran Torino. I thought it was worthwhile. That night, despite them coming in five times in two and a half hours to do some necessary thing, we both slept fairly well.

The next morning, Thursday, 9/24, I felt good. When he'd been there, the hematologist said that on Friday would could start negotiating about when I could go home but I gave the poor hospitalist a hard time that morning, asking if I couldn't wait for the test results at home. He said they weren't ready to let me go yet. I asked if they could at least take the thing out of my arm. He said not yet, as they still wanted to give me more IV antibiotics. He did say I could take a shower and put on some regular clothes.

Cam spent the morning with while I got my shower then went home to grab some lunch, take his own shower and pick Sam up. They were going to come back and spend the evening with me. I was excited about feeling well enough to hang out with them and for my friend, Erika to come by with her yummy food. (She's a wonderful cook.) Then, my throat started hurting and I started to get scared again. On the outside of the door to my room, there was a big stop sign, warning people not to come in if they might be sick, since I was so vulnerable to infection. Now, I was worried that I was getting sick with something I might not be able to fight. I ended up asking Erika for a rain check, explaining that I needed to rest.

Cam & Sam arrived but when I realized Sam wasn't feeling well and had a stuffy nose, I had a hard time enjoying them being there and started to be paranoid and scared. I didn't want to be afraid of getting some cold from Sam but I was worried. The hospitalist came in to talk with us then and said that he didn't think I could catch strep throat with all of the antibiotics they were pumping into me and that he wasn't as worried about me catching a viral infection from Sam as they were about me getting a bacterial infection. I chilled out a bit.

Before he left, the hospitalist had told us the good news that in her preliminary look at my bone marrow, the pathologist had seen the absence of the cells I was missing but hadn't seen invasive cells like they would expect to see with Leukemia. This was great news but I still wasn't feeling well and they weren't saying I was in the clear yet. I took some more meds to make me feel better and pretty much crashed on the guys.

We'd agreed that Cam would take Sam home that night and spend the night with him. Cameron's brother, Eric was coming in from Chicago for his first visit since we've lived in California. At one point, they talked about canceling the trip but I didn't want to be the reason these brothers didn't have time together. I didn't want to be that sick. We decided that Sam could spend the night with me in the hospital on Friday if I had to stay. He'd expressed some interest in sleeping at the hospital earlier and I'd been missing him so since I didn't have to worry about catching anything from him, it seemed like a good plan.

When the hospitalist said they didn't see Leukemia right away, he mentioned that there was another thing it could be. He made it sound unlikely but said that there was a possibility there might be something non-cancerous in my chest that was causing the problem. If that turned out to be the case, it seemed like it would be fairly straight-forward to take the thing out. He didn't seem to expect to find anything but wanted me to have a CAT Scan the following morning just in case. I said sure, joking that it would be another new experience.

(I did have something like a CAT Scan when I was in 6th grade and my parents took me to an ear, nose and throat specialist to see why I couldn't smell. They said it might have been a brain tumor. It turned out not to be a brain tumor and said maybe I damaged my smell receptors in some early fall but also said some people are just born that way.)

I got a ton of sleep that Thursday night and by Friday, 9/25, I was really ready to go home. They took me down for the CAT Scan where they pumped some crazy fluid into my IV to make my insides show up on the CAT Scan. I laid on a table that moved back and forth under this big arched tunnel. I had to hold my breath a few times and we were done. The guy who transported me to and from the CAT Scan said I didn't look sick. I said that I didn't feel sick but that they were worried about my blood.

I was sort of back to hoping they wouldn't find anything and that it was just a fluke. I'd heard that sometimes people's levels just go back up and they don't know why. That would have been alright with me.

That afternoon, while Cam and Sam were on their way to me, the hospitalist came in with mixed news. He said that in further study of my bone marrow, the pathologist had not seen Leukemia. He said they were sending it off to a pathologist who specializes in this type of medicine for a closer look. In the meantime, they had found something they wanted to investigate. They had seen something on my CAT Scan.

The hospitalist said that finding out that part of my thymus gland was enlarged was not at all what they expected. He said that Leukemia would have been the most common explanation but that since they didn't find Leukemia, they wanted to find out more about what was happening with my thymus. I didn't know what this meant at the time and realized that I might have to have something removed but I have a friend who has had her thyroid removed and I think I thought he was talking about something like that. I would worry about it later.

All I knew was that they didn't think I had cancer, they were letting me go home, they were going to take the thing out of my arm and I felt well. I was free for a weekend with my family. I was happy.

To be continued...

Chapter 3 - Music, New Antibiotic, First Blood Work

2009-10-03T01:42:00.000-07:00

Gosh I'm a slow story teller. But the clock is ticking. (They have me on the books for surgery this Tuesday, 10/6 at 11am.) And, I'm running out of time to tell the rest of this story before then. Thanks, Rayna for your kind words of praise & encouragement to keep writing. (I did like The Glass Castle.) (photo credit)

So, where were we? We'd just returned from vacation. I finally returned to work for a short day on Monday, August 24.

While I was in the city, I also visited my dentist to talk with her about the canker sore and see if I could get some medicine my friend said she has taken to head the next one off at the pass if one ever tried to crop up again. She didn't want to give me the medicine but she did want to clean my teeth and work on my gums, leaving them sore & bloody. I have trouble with my gums and just before the first canker sore appeared, I'd tried flossing because I'm supposed to but floss but ended up with an especially yucky mess.

In the ER, I learned that we have a lot of bacteria in our mouths and that when I flossed, I likely released a bunch, maybe leading to that first canker sore. Looking back, I think that when I went to the dentist to try to ensure I didn't get another mouth sore, we released a bunch of new bacteria my body wasn't prepared to counter.

After leaving the dentist's office, I was picked up by Cam. We swung through Marin to get Sam then headed to Sacra-
mento for the Green Day concert. I was excited about the show but achy and not feeling well. I had a margarita with dinner and then Billie Joe and the adrenaline carried me through. It was a joy to be jumping up and down and pumping our fists in the air with the band but they wouldn't let us sit down. It was Sam's first big stadium concert for a band we all love. Afterwards, he said it was "the funnest thing ever." At 12:03am on 8/25, I posted, "Mary Maddux was simultaneously exhilarated & exhausted by the Green Day show." (Cam wrote about the show on his blog.)

I made it back to work a little after noon the next day. I stayed until after 7pm that night, finally getting some work done. That night, like this night, I was awake in the night. I wrote, "Mary Maddux is so pumped up to finally be feeling better that she has been awake for hours." Deanne encouraged me not to overdo it. Maybe I should have listened.

I worked a full, long day on Wednesday, the 26th, the day before Sam's first day of 7th grade. Thanks, Cam for taking him shopping for school supplies that night and thank you, Sam for not needing much. That night, my status reads, "Mary Maddux slept."

On the 27th, instead of picking Sam up from school to hear about his first day, I just talked with him on the phone about it and worked until almost 9pm. (I should mention, we had auditors coming by the next day who were going to pull files randomly. I was trying to make sure all of my paperwork was in order. I felt pretty good about where things were when I left that night, all things considered.)

The next morning, I arrived early to do a tiny bit of last minute prep for the auditors. I was saddened by the news on the paper in the front lobby that morning about poor Jaycee Lee Dugard and the crazies who held her captive for 18 years. Have I told you how much discouragement I was feeling about my work at this point? It was exhausting to keep trying and keep trying and feel like there was so much resistance where there shouldn't be. Why can't we just take care of our kids? Why can't we be compassionate to one another? What do you do when you know about a sexual predator who is free, who the police aren't trying to prosecute, and you read a story like this one? Keep speaking up and asking questions, I guess.

At 11am, I bolted. Way back when, Cam & I had purchased tickets for the three-day Outside Lands music festival in Golden Gate Park. Pearl Jam, the band he was most excited about seeing was playing that night and we wanted to get a spot with a good view of the stage. Before heading to the park, we grabbed lunch and had a picnic in South Park. (Cam wrote about the festival.)

I was tired when we made it to the stage but happy to settle on a blanket on the grass with some grapes and water and listen to the early bands. At first, I was standing for Built to Spill but in the middle of their set, I was tired, laid down and fell asleep. Later, Incubus had me rocking out and jumping up and down again but I was tired during Pearl Jam and so annoyed by the people crowding around us. We missed the sign for the shuttle bus and walked a bit out of our way which was tiring but I just kept putting one foot in front of the other.

Saturday, the 29th, we had an early lunch/late breakfast near the Marina then camped out at one stage for the day where we enjoyed music by Raphael Saadiq, Jason Mraz, Black Eyed Peas & Dave Matthews Band. Again, I was cranky at people who invaded my space but think I made it through the day without falling asleep.

The last day of the festival, we were tired but did lots of blanket laying between sets. My favorite acts from that day were Lenka, The Avett Brothers, Brett Dennen and Band of Horses. Surprisingly, Cam was ready to head home before Band of Horses finished their set. He'd been really looking forward to seeing them but we were both spent. At 7:40pm, we were on a shuttle bus headed for home. Big shout out to the Peppel & Zaklikowski families for having fun sleepovers with Sam while Cam & I had some grown-up play.

On Monday, 8/31, after an arduous meeting about if a struggling 19 year old in a precarious situation should be "emancipated" from the child welfare system, I got news that afternoon that my job was being eliminated for financial reasons. (One fifth of the staff was laid off.) Tuesday morning, I took my time at home, making banana bread and listening to a new duet by Brett Dennen & Natalie Merchant before going in. I was processing again. Wednesday was a big day with court in the afternoon. I did my absolute best to convey to a team of people responsible for caring for a youth why we thought more resources were needed for him and his family. They heard me and said they appreciated my perspective but we didn't get much out of them. I was ready for a break.

One of my new, worst fears was realized when that Thursday, I started feeling a new sore forming in my mouth. I tried to will it away, hoping against hope that it was nothing major. I worked a short day and posted a note a little before 7pm that evening saying I'd taken a nap and was feeling better.

The next morning (Friday, 9/4), I was back in the dentist's office, looking for a way to head this mouth sore off at the pass. They said the sore was right on a salivary gland which was concerning to them because if the gland became infected the side of my face could swell up and the infection could even spread to my ear. They gave me a prescription for some Amoxicillin but nothing to help with the pain and discomfort. Again, the sore was on the right side of my face and my right lymph node was swollen and I was running a fever. I started popping Motrin like candy.

At least I had the antibiotics, I figured. Things should start getting better over the next few days, I reasoned. I rested on Saturday. Sunday, even though I was feeling puny, we went back to Golden Gate Park, this time to meet friends for Shakespeare in the Park.

When, on Labor Day (9/7), the sore didn't seem to be getting better and I was worried I was getting another sore on the other side of my mouth, I started crying. Cam was supportive and empathetic. Encouraging me to see a doctor.

First thing on Tuesday, 9/8, I went back to the dentist. They were concerned because my sore didn't look better, my face was starting to get swollen (along my right jaw line) and I was bawling in their chair. They sent me to an oral surgeon who thankfully was able to see me that afternoon. They took a fancy x-ray then I nearly hit the guy after he poked and prodded and squeezed the sore on the inside of my cheek, causing excruciating pain then tried to send me away telling me to suck on sugar free lemon drops. I was feeling frantic and started crying in his chair. I wasn't sure how I was supposed to focus on transitioning my work to remaining case supervisors when I couldn't function because of the stupid sore in my mouth.

He acknowledged my parotid gland (#1 on the image) was infected. He told me to continue taking the antibiotics. He upped the dose and gave me a few more days worth and a prescription for a medicated mouth wash but said pain medication wouldn't help my sore heal. But what about making me feel better? I was embarrassed to have to grovel but did end up getting some Vicodin.

With the Vicodin, I was able to power through an important meeting at 9am the following morning (Wednesday, 9/9) then went home to rest and have some lunch before going to see my primary care physician that afternoon. She seemed to think that I was in good hands with the dentist and the oral surgeon but did agree to order some blood work per the dentist & my request. A colleague of the doctor's had asked me to get blood work done last spring but I never got around to it.

That night, I was again awake in the night. With my pain medication, I started feeling optimistic and made plans to attend Power to the Peaceful and hopefully see Alanis Morissette, Michael Franti + Spearhead. My friend, Anne wanted to attend their Global Action Forum & celebration the next day for her birthday. I stated my intentions to go with her.

On Thursday, 9/10, they drew blood for the first time. Friday afternoon, I started to worry again because I was facing another weekend and while I was tolerating it better, the sore in my mouth didn't seem much better after a week of antibiotics. Plus, now, I had swelling up to my right cheek bone. I spoke with the oral surgeon who said I should go to the emergency room if my face swelled up really big over the weekend but that otherwise, he would see me on Monday, as scheduled. We had rain and thunder during the night on September 11th.

That Saturday, I knew I was sick when I was too tired to even try to go to an afternoon/early evening concert of one of my favorite musicians of all time. I stayed home. My medical knowledge started increasing as I read about how a nerve runs through the gland the sore had formed upon, which was now infected, explaining part of the pain I was experiencing.

I didn't make it out to celebrate Anne's birthday with her on Sunday the 13th. More resting was needed. I was still running a fever. I'm not sure which of these nights I was waking up in the night with shivering, teeth-chattering chills. It seems like that was happening most nights for weeks and we'd just become resigned to it.

Giving me something positive to look forward to, Cam bought tickets for us to see Swell Season when they come to town in November.

We discussed the possibility of going to see Regina Spektor in October but don't have tickets yet. She has several songs I like. One of them was comforting to me when I was first sick. Sometimes, when I sing along, I change a line of this song to say, "No one laughs at god when they have a canker sore." Not the same as war but the closest I've come.

Monday, 9/14, I passed off most of my work & went back to see the oral surgeon. He thought I looked better, despite there still being a sore in my mouth and some swelling. He told me to finish up the antibiotics and come back to see him in 10 days. I had three days of the antibiotic left and only 5 pain pills remaining. He said that hopefully I wouldn't need them for much longer. When I asked him about the fever and chills, he said I should talk with my primary care physician and ask her to look at my blood. He specifically mentioned having her look at my white blood cells. The next morning, I sent her an email.

My last day at SF CASA was Tuesday, 9/15. Everyone was very kind to me. They wanted to have a happy hour to celebrate us liking each other as human beings but I wasn't up for celebrating much at the time and just barely felt human. I thanked them for the offer and asked for a rain check.

Early that evening, my brother, John arrived in time to help me close up my desk at CASA and carry my things up the hill to the parking garage. As I was finally leaving, my boss tried to say all these nice things about my contribution and how I would be missed. I was so spent I was barely able to say thanks.

That night, I had an email back from my primary care physician. She said she was sorry to hear I was still feverish. She also told me for the first time that my white (and red) blood cell counts were low. She said she thought my mouth sore/parotid gland infection was only partially healed. She asked me to come in the next morning for more blood work.

I appreciate John going with me to the doctor on his first morning in SF (9/16). The doctor gave me a second antibiotic (Clindamycin) that was intended to specifically address mouth issues and also gave me some more Vicodin saying I had a legitimate reason for taking it. That afternoon, my stomach was a upset and I needed to rest, napping for over an hour. I wrote the doctor asking if she really intended for me to be taking this new antibiotic in addition to the old one and the Motrin I was taking for the fever and the Vicodin. I was so full of medicine and not able to eat much because my mouth was still a mess.

That evening, she said she did want me to take them simultaneously if I thought my stomach could tolerate them both. The next day, 9/17, I took the new antibiotic (and the old one). I napped in the morning before grocery shopping which wiped me out and again immediately after putting the groceries away. We were all supposed to go to the Lords of the Samauri exhibit at the Aisian Art Museum that night but I just didn't think I could do it. John agreed to take Sam into the city. They met up with Cam and enjoyed the exhibit while I rested.

That night, I received a phone call and email from my primary care physician. She'd received the results of my latest blood work. She said it showed a persistence of low white blood cells and that the type of cell that is most important in fighting infections, the neutrophil, was very, very low. She said I should avoid sick people, crowds and public transportation. She said she wanted me to call the next morning to make an appointment to see a hematologist.

One weird thing was that that Thursday night, the first night of the antibiotic, when my doctor was just starting to worry, for the first time in a long time, I didn't wake up shivering from a fever. This was an exciting development in my eyes and I started to feel hopeful that I was on the road to recovery. My doctor had said it was entirely posible that my low blood cells were due to an infection and would return to normal over time. Since I had been sick for so long, this seemed like a reasonable explanation to me.

On John's birthday, Friday, September 18, I called the hematologist's office and was told they could see me in two weeks. I was still very tired but didn't have chills that night or the next night. I rested Saturday and was supposed to see my Aunt Maria that Sunday when she was at Stanford but I was too exhausted. She did send much needed love and encouragement by email that day telling me I was an amazing woman, making me cry. She wrote, "Mary, you are so treasured. Wish we could have shortened the Tiburon/Los Altos distance this weekend, but know that many, many hugs came floating your way on the coastal breezes." Cam did the laundry. I read and slept.

That Monday, Sam didn't have school, Cam didn't have work and we were supposed to have a family day. First, I had to finish up a court report for the nine-year-old boy for whom I am still a volunteer CASA. Then, I had to go get more blood drawn. Finally, we decided to drive to the beach. We ended up at Stinson because Sam wanted to break out his skim board(s). It was nice to be out of the house even if all I did was sit in the car and lay on a blanket.

The hematologist had called that day, saying he had my lab work and that I could/should call him back. I called back quickly but didn't reach him. The new antibiotic was finally making the sore go away. I hadn't taken the pain meds lately and I really thought I was getting better until speaking with him the next day when he said he might want me to go to the ER. Then things started getting interesting.

To be continued...

Chapter 2 - Blue Green Algae? Night Chills Begin.

2009-10-02T09:38:00.000-07:00

I hope I wasn't too melodramatic yesterday. I didn't mean to leave anyone wondering or worrying. I wish I could sit and talk with each of you about what's been happening to me but since I can't, thanks for allowing me to tell the story at my own pace.

So, I left off as we were embarking on our family camping vacation. Cameron did a lovely job of documenting our trip on his blog. Let me see what I can add, in light of my current medical condition, since that's the story I'm telling.

Sunday, 8/16, I enjoyed being out of the house, in the sunlight and seeing new parts of northern California as we drove farther north than we ever had before. At one point, while we were listening to an audio book, I feel completely asleep in the afternoon sun, post lunch. That didn't seem remarkable at the time but worth noting now.

I was impressed by the area around Humboldt Redwoods State Park and our secluded campsite was beautifully nestled among these giant trees. I was happy to be there but tired. I would have been alright staying at the campsite (except the mosquitoes were brutal there) but Cam wanted to walk down to the river. Sam & I wanted too too so we did and had a lovely little dip in the river (despite the public health warning). It didn't say to stay out of the water, just to avoid contact with the blue-green algae and their toxins. We tried not to get water in our mouths and to wash our hands before eating. I took a shower that night.

Because I had been sick, I hadn't done the research about the areas we'd be visiting that I'd intended to do. We booked the campsites months in advance with the full intention of swimming being one of the main activities of our time in the area. We didn't have internet access so I wasn't able to read about the dog deaths, etc. There were signs posted but we just crossed our fingers and went for it. Since none of us experienced the obvious gastrointestinal upset they alluded to over the next couple of days, we seemed to have escaped relatively unscathed.

I didn't think to mention our exposure to blue-green algae to my doctor until after they started finding trouble with my blood work on 9/17. I mentioned it to my primary care physician on Monday, 9/21, to at least two doctors in the ER/hospital when I was being admitted on 9/22, to the internal medicine doctor who treated me while I was in the hospital and to the hematologist. None of them seem to have thought it of much consequence. I don't think I bothered to mention it to the thoracic surgeon on 9/30.

As I type this, I'm thinking maybe I should bring it up again but so far, none of the doctors I've been working with seem to think this is part of my current problem which is great because I think the day we spent playing in the river was my favorite day of the vacation. The area where we spent the most time had flowing water which was supposed to be helpful for avoiding the algae. There is a picture of me eating after having swam in the water. I don't think we had any hand sanitizer with us. (Yes, Heather Zona, I would have been happy to have your Purell with me that day but I didn't.)

The next day, we drove to an easy path where we had an easy walk among some of the tallest redwoods. I liked the easy part but the area was really battered from misuse. Cam drove us to another area where there was a path he thought we'd like. We had a picnic in the shade then crossed a bridge over a dry riverbed and walked towards what Cam assured me was a lovely path in the shade. (Did I mention it was in the 90s while we were at Humboldt?) I was up for crossing the riverbed but when we couldn't find access to the path and when Cam proposed we walk along the river for awhile searching for it, I just camped out in the shade of some trees and let him walk along by himself. I didn't have the energy to even talk about how I didn't have the energy to walk a long distance and maybe not find a path.

I guess he found it and had to walk the long way back to us again and convince me to leave the shade and follow him. Once we were in the shade, among the giant trees in this somewhat secluded cove, I was happy again. We happened upon a path down to a creek. Cam proposed we walk along the creek for awhile. Since it was shady and the water was cool, I was happy to wade along at a slow pace for awhile. When our way was blocked by fallen trees, we hung out and enjoyed the area before walking back.

We made it back to the car in mid-afternoon with a lot of the day left to kill. I was starting to like the tongue-in-cheek suggestion Cam had made about going to see a movie in a neighboring town (about 45 minutes away) but we were in the redwoods and were supposed to be enjoying them and we could see a movie anytime. So we drove around a bit looking for areas where I was willing to hike. I felt lame feeling so tired but I was tired. When Cam proposed just driving along the Avenue of the Giants for awhile in the AC with some music, that seemed like a lovely compromise. We were able to appreciate the beauty of the redwoods while sitting in comfort.

I wanted to stop for ice cream but knew Cam had packed lots of nice food for us and that it was waiting for us back at the campground. Eventually, we decided to stop there for some food, I insisted upon "linner" around 4pm as I felt famished and like I needed more than a snack. When we decided to go back, we talked about going swimming again but everyone was happy resting at the campsite. Cam read aloud to us from a book we were sharing and I hit the sack early.

The next day, I woke feeling fine. I slept well every night at Humboldt (except for waking up in the night having to go to the bathroom and not wanting to trek across the campground in the dark to the bathroom even though the stars then are nice). Cam & I packed up the campsite while Sam caught a few more zzzs in his tent. When he awoke, we scooped him up and headed off.

I was ready to move on and happy to see new territory. We had breakfast in Eureka then enjoyed a lovely drive along the Trinity National River between Eureka & Lassen, our next destination. The white water rafting opportunities we passed along the way looked fun. Again, I was happy to be sitting, resting in the car, seeing beautiful nature while basking in the sun but not exerting myself. I think I was still taking Motrin and running a fever pretty much this whole time but my mouth was much better.

Cam had talked about hoping we could get a hike in that day. As we were planning, I liked the idea very much but as we were approaching the park, the idea of laying low was more appealing. I felt lame being so tired on our vacation but when we found out one of the trails was closed, I was glad that Cam was satisfied with the idea of a swim in the lake at our campground.

We set up camp then headed over to the lake. The water was cool but refreshing. We all enjoyed the swim. (I was happy that there were no posted warnings about getting in this water).

When we returned to the campground, we realized that we'd accidentally left the flap open on our tent. It was full of flies which was a huge bummer. They were all congregating at the top and we weren't sure how to get them out. We turned the tent upside down and shook it but that didn't seem to help.

I decided to make the 13 mile drive to the campground store to pick up a few supplies (Sam wanted to roast wieners) and to take a shower. When I returned, I was happy to hear that Cameron had figured out how to get rid of the flies. He had turned the tent so that the door was at the top and freed flies happily flew away. This thrilling news reminded me that I'd left the windows open in the car. I went back to it and climbed in the passenger side, put the keys in the ignition and turned the car on just enough to get power to close the windows. At the same time, I was still talking with the guys about dinner, my shower and the success with the tent. I managed to close the door w/o turning off the car or retrieving my keys. Woops.

We were 13 miles from the nearest working phone. I talked with the camp-
ground hosts who said a ranger might come by in the morning or they said that could give me a ride to the store the following morning after 9am. They were not very enthusiastic about resolving the problem quickly and it was a very vague plan. Despite the new dilemma, we enjoyed our evening by the campfire and decided we'd work on finding a solution in the morning.

That night, in the tent, I woke up shivering. My teeth were chattering and I couldn't get warm. I found some Motrin and some water and a few minutes later, when my fever had broken, I was warmer and able to sleep again. The same thing happened the next night and the next. I now know that shivering fevers with chills in the night are a sign of a bacterial infection. I was seriously ill but thought the issue was the change in elevation effecting the temperature. Plus, we were on vacation with limited time to enjoy the wonders around us and without ready access to medical care. There didn't seem to be any reason to go to a hospital and the closest real town was again about 60 miles away. Trying to see a doctor would have likely been an all-day ordeal. One I decided wasn't necesesary.

The next morning, I was able to hitch a ride from some other campers who were going to the campground store. I used the phone to call Geico who thanks to our emergency roadside assistance plan was happy to send a tow truck up mountain roads from Redding. Google maps says Redding is an hour away. I think it took that tow truck closer to two hours to get to me but really, the issue was resolved remarkably painlessly. Honestly, I was happy to have the time to sit in the shade and read a book rather than trying to hike morning, noon and night.

Jeremiah, the very nice tow truck driver, told me the very sad story about why one of the trails we'd wanted to hike had been closed. Suddenly, all of our problems seemed like very minor ones again.

He had the car running in no time and we were off to hike Bumpass Hell. Cam describes this surreal place beautifully. I will talk about my experience physically. I did need to stop frequently, even on the fairly flat parts of the trail and struggled to climb up back up the mountain at the end of our hike. I knew I wasn't feeling 100% but I also thought I was just really out of shape. (Surprisingly, there are some really nice pictures from this hike. It was probably my favorite part of our time at Lassen.)

We were only in the area for a few hours then we were back in the car and I was happy again to be seeing beautiful things while sitting. We checked out some easy-to-get-to geothermic activity then went to a visitor center to relish the air conditioning (it was a bit warm at Lassen too). After looking at a few exhibits, I found a chair and was happy to just sit there for as long as my adventurers would bear. I would have laid down if there was any place I could have gotten by doing so.

Cam proposed another small hike to another lake that was close to our camp-
ground. I said sure because I loved the idea but I was worried about my ability to pull it off. I fell asleep in the car on the drive back to the campground. When we got there, I got out of the car and walked straight to the tent w/o a word and fell down exhausted. I was wiped out.

Cam & Sam decided to swim at the nearby lake again. I felt bad that we hadn't gone on the hike to the other lake but I just couldn't do it. After resting for about an hour, I was able to walk over to near where the guys were swimming. I'd taken more Motrin because I was still running a fever and felt chilly. I didn't have the energy to join them for a swim this time.

Cam was ready for a break but Sam was trying diligently to free a log from some mud. Rather than walk all the way over to where he was working, I made him walk all the way over to me and then suggested he get another kid to try to help him. When that kid declined, I eventually got up and helped but it was really a struggle to exert that much energy. I was feeling lame again but Sam & Cam were sweet to me.

The next morning, after another night of shivering where I pulled on Cam's stocking cap and socks and chattered my teeth until the fever broke, Cam suggested we head home a day early. I was thrilled at the idea of having a bit more time to recouperate at home before heading back to work. When he woke up, Sam agreed to the plan. After two weeks of camping, he was starting to miss his screens.

Cam wanted to do one more hike before we hit the road. I had only packed my Birkenstocks and this trail called for hiking boots because of the loose volcanic rock they'd be climbing. This gave me an easy way out of climbing a volcano. Instead, I was able to sit and lay in a park in the shade next to a lake and read for hours.

On the way there, we saw a mama bear and two bear cubs. We also admired Lake Shasta in the distance. I was very happy they were able to do the hike and very happy to get out of it. Before we left the last part, I did have a bit of stomach trouble, the first I'd noticed, but we were heading home and that in itself made me feel better.

We broke up the drive by stopping for sushi & a movie. I was able to check out what it was like to have internet access on my phone. I'm sure I slept some in the car too.

The next day, a Saturday, I just crashed. I don't think I spoke with anyone. I remember being cranky because Cam wanted to go out to eat for lunch when he'd said we could rest that day. Gosh, I was sick if the idea of going out to lunch was too exhausting, eh?

My FB status from August 23 says, "Mary Maddux is easing back into things very slowly." There was a CASA kid's event that day at Angel Island and before I'd gotten sick, I'd hoped that I'd be able to go to the event as I had such a fun time last year and was excited about the opportunity to spend time with some of the volunteers and the youth I was working with at the time. My boss had said not to worry about trying to go to the event. She had said to do my laundry, rest, etc. I think I finally spoke w/my folks & my brother about the trip & their upcoming visits to California.

Speaking of my folks, they landed at SFO a little bit minutes ago and will be on their way to me shortly. I may not get to write much in the coming days as I want to spend time with them. I'm sorry for those of you who want to know more right now but please just know that I want to know more too and that there is still much I don't know and I have my hands full processing it. I will keep talking as I am able. Thank you for continuing to care.

To be continued...

What's the Deal? Chapter One - The Canker Sore

2009-10-01T08:28:00.000-07:00

"What's the Deal?"
"What's causing this?"
"Have they figured it out?"
"How do they fix it?
"Anything I can do?"
"Did they find out what was up?"
"WTF!?"
"What the heck is going on?"
"What?"
"Have they been able to "rule" anything out?"
"What is going on?"
"!!! What is the diagnosis?"
"Fill me in when you get a chance." (photo credit)

These are actual quotes from real friends. I'm so thankful for each of you. I've tried to get back to people as best I can but have honestly been so exhausted by talking with doctors and going to appointments and having tests and thinking about all this stuff that I have barely had energy to talk with my family. Plus, we didn't know what was up.

Yesterday, the thoracic surgeon seemed to think he knew and has what he sees as a fairly simple, straight-forward solution. I've been wanting a solution so that's great but it involves cutting through my breast bone, days in the hospital and months of recuperation.

He's confident about what should be done and ready to take action. The other doctors I've been working with recently seem to agree with his assessment. I'm inclined to go along with the plan.

Although, I'd rather just be better and not have to have surgery or give myself injections or take medicine or avoid crowds and fresh fruit and flowers but they say I'm currently very vulnerable and I don't want to get sick again or get sick with something I'm not able to fight. (photo credit)

We've been joking about "death by grape" but yesterday I heard that if I ate a bad strawberry or some unwashed lettuce and got salmonella it could be "lethal" so maybe it isn't really funny.

I'm still being vague. I know. Still processing but maybe if I try to tell the story that will help. Here goes...

Let's flash back a couple of months to early August. You can use this Brett Dennen song as a soundtrack.

I was enjoying the warmer weather, riding my bike to the ferry for work, eating red pears and fresh figs, having margaritas with friends after work, riding home in the sunset. I was listening to music, working out with the Wii Fit, roasting kale and laughing at silly movies. In response to the question, "What is your biggest annoyance right now?" I answered, "I'm feeling peaceful right now. Ask me later."

On August 8, we hosted a birthday party for Sam and survived twenty hours with six 12 year old boys relatively unscathed. It was even fairly enjoyable. I don't remember being tired and stayed up past 1:30am. Our bikes were stolen, which was a bummer but whatever, that's part of life.

We dropped Sam off for a week of overnight kayak camp and I was feeling like a good mom. Cam & I saw Tim Linsecum pitch at a Giant's game. I was happy, relishing in this wonderful life we're living.

On August 12 (a Wednesday), I went home sick from work. I hadn't felt that great on the way in but I had work I was supposed to be getting done before vacation. I was supposed to be in court that afternoon & I had a meeting with my boss that morning. I really felt it was important and necessary to be there.

After our meeting, my boss said that I should go home as it was obvious that I wasn't feeling well. She said the work could wait and that she'd cover court for me. She said she didn't want me getting anyone else sick and that I should rest. I was running a fever, one of the lymph nodes in my neck was swollen & I had the beginnings of a canker sore in my mouth. (I don't get them normally.)

The first bus home doesn't start running until mid-afternoon and I couldn't wait. I called Cam insisting that I needed to go home right away. He swung by my office so I could drop him back off at work and drive myself home. I was so happy to be home.

The next day, I decided to stay home and rest. I didn't remember ever having had a sore like that one before but figured people get them all the time and that it shouldn't have been a big deal. I just stayed home on the couch in my pjs, taking Motrin, resting and thinking I would be better the next day. (photo credit)

But in the morning, I was worse. The sore on the inside of my bottom lip was bothering and upsetting me. I couldn't smile or eat or talk or close my mouth properly w/o it hurting. I sat there with my lip stuck out. Cam said looking at me made people uncomfortable. My boss continued to be supportive, encouraging me to "please stay home."

Missing work when you are sick is one thing but suddenly, I was facing the really troubling prospect of being sick during our vacation. I got some over-the counter canker sore pain relief medicine. It numbed the pain which made things more tolerable.

That Saturday, was supposed to be the day of packing, planning and prep for our week-long camping trip. I spent most of it on the couch while Cam got things ready. He really is wonderful.

That Sunday, the 16th, we headed out. All the rest of the past few days had helped a lot. I was armed with my Motrin and my Benzocane and actually thought the sore seemed finally to be starting to heal. Regardless, I was going to do my best to put it out of my mind and enjoy this time together as a family.

To be continued...

New Horizons

2009-09-28T08:17:00.000-07:00

Dear Colleagues & Friends,

It is with mixed emotions that I inform you, today will be my last day as a case supervisor at San Francisco CASA. Due to financial reasons, there have been staff cuts and my position has been eliminated. I have told some of you directly but I understand some of you are hearing the news from others. I wanted to make sure you heard from me.

Having had the opportunity to advocate for our kids these past two years has been a real gift. It has also been incredibly challenging. My twelve-year-old son is happy about the possibility that I might be around for him a bit more in the coming weeks and months. While I will still be active on the cases of two youth for whom I am a CASA volunteer, I’m not yet sure what my next professional endeavor will be. I’m going to take a little time to rest, regroup and think about where I want to invest my time, energy & passion in the future. If you have ideas or suggestions, please let me know. Thank you for the work you do on behalf of our kids.

Back before I started working at SF CASA, I wrote about something a guy named Dean Kamen says, "Work on the big problems--the problems that matter. Most of the time you will fail, but you will also occasionally succeed." Thanks for the successes.

Hopefully, I will be able to stay in touch with some of the amazing people I have collaborated with during my time at CASA. If you would like to reach me after today, I would be honored.

Warm Regards,

Mary

(Maybe I will start blogging again.)

From: Tue 9/15/2009 3:16 PM

Photo Credit: John Stacy Denham

Do you have a facebook?

2009-03-26T20:49:00.000-07:00

Hi Everyone,
If you are reading this, thanks for caring enough to come to my blog. I have come to realize that one of the main reasons I was blogging was to share things with people I care about who care about me. Thank you for being one of those people.

These days, rather than writing lengthy stories about our new adventures (after living here for nearly 3 years, many of them are repeat adventures), I have been enjoying sharing shorter one-liner stories with others who are sharing their one-line stories with me via Facebook. It is where I have been sharing photos, music and links to things I find interesting too.

I know I've written about my Facebook leanings before and apologize if I am being redundant. For awhile, I tried posting the things I was posting on Facebook on the blog too but that really was redundant.

The blog has been a wonderful online journal and virtual photo album. I wish I were keeping it up but I thought I should acknowledge I'm not. Today, I even signed up for Twitter. So far, I am only "following" Cameron and Eddie Izzard but who knows where this will lead.

If you want to join me in one of those other worlds, please do.

Peace,
Mary

Welcome, Barack

2009-01-20T07:09:00.000-08:00

This video was made by Jared Paul, the founder of A Good Idea, the group Sam, Leo and I volunteered with, yesterday, Martin Luther King Day. Jared gave us the opportunity to serve and to make a new friend. Nice to have met you, Jared & Melanie. As Jared's video says, "Be Kind. Be Giving. Be Empathic. Be Compassionate. Be the Change." Welcome, Barack.

Giant Mud Puddle - Birch Bay, Washington

2008-12-18T03:43:00.000-08:00

When Cam and I joined Sam, and others from the Powell family, in Birch Bay, Wash-
ington for the family reunion, tide pooling was the first order of business.

Here are more photos of us tide pooling.

Through the snow.

2008-12-17T07:52:00.000-08:00

My last post stops, at the the point on the Maple Pass Loop, just before we first encountered snow on the path.

We hadn't realized that part of the loop would require us to cross through (and climb up) so much snow.

Thankfully, the weather was lovely.

We were comfor-
tably warm the whole hike.

Flowers were bursting out every-
where.

When we made it to the top of the mountain and could see Lake Ann, and the trail that would take us back out, on the far side of that lake, we were encouraged to keep going and get there.

Eventually, we had walked through so much snow that it stopped being novel and we had had enough of it.

Maybe not too surprisingly in retrospect, but at the time, I hadn't thought about the fact that climbing down mountainsides covered in snow would be more difficult than climbing up them.

There are not photos to go with it but one of our favorite stories from the hike happened at a point where we had lost the trail but felt we needed to climb down a steep area, through some shrub-like trees and snow.

It was so steep that I was crawling on the ground, holding on to the trunks of the trees to keep from sliding down the mountainside, while trying to make my way to more level ground, where I could stand again. Cameron asked, "Are you alright?" I answered, "No. I am falling down a mountain."

Once, I marveled that being up on an unfamiliar mountain, hiking around in the snow, was maybe the craziest thing I had ever done.

What if we had really gotten lost of the weather had turned or someone had gotten hurt. We did encounter a few other brave souls but were on our own up there for the most part.

But in the end, we did not fall.

We made it.

Thanks for the mem-
orable adventure, Love.

This Flickr set has more photos of our trek through the snow.

To the Snow

2008-12-16T16:01:00.000-08:00

As Cam men-
tioned, we are getting ready for a trip to the snow.

We took a trip to the snow on the second day we were in the N. Cascades National Park. I hadn't been expecting that one.

This Flickr set takes you on the trail with us from the base of the mountain, near Rainy Lake (shown above) to a point high above.

Shortly after this last photo, we began our trek through the snow. That journey will be documented soon.

N. Cascades National Park - Day 1 - Creek

2008-12-16T02:34:00.000-08:00

Last July, on our way to the Powell Family Reunion, Cameron and I took a side trip to the N. Cascades National Park.

After marveling at the views from the scenic overlook, we explored a camp-
ground and creek in the valley below. Here is a Flickr set with more photos from that night.

N. Cascades National Park - Day 1 - Peak

2008-12-07T18:40:00.000-08:00

Lately, I've been spending most of my online free time on Facebook. Since I learned how to post and share things with family and friends there, I haven't been blogging as much. If you want to join the fun, please visit my profile and let me know.

One thing I do want to do on the blog is share some photos of and stories from the Powell family Reunion. Cam and I spent the weekend before the reunion camping in and exploring the North Cascades National Park. I kept calling it a second honeymoon.

These photos were taken at a scenic lookout near Cascade Peak.

Predawn Hike to Tennessee Valley Beach

2008-11-16T20:22:00.000-08:00

This morning, Cam and I left home at 5:35am for a predawn hike to Tennessee Valley Beach. It was peaceful. We were the first ones to make it there today.

Here is a Flickr set with more photos from our outing.

Angel Island Pics on Flickr

2008-11-15T22:24:00.000-08:00

You may remember that we went to Angel Island to watch the Air & Water show on Saturday, 10/11. On Sunday, 10/12, the island caught fire.

I just posted my favorite photos from our day on Angel Island on Flickr. Check them out.

Maddux Family in the Mist

2008-11-08T11:45:00.001-08:00

Last weekend, it rained all day on Saturday. So, on Sunday, we decided to make the most of it by going on a waterfall hike. From the Pantoll Ranger Station, on Mt. Tam, we hiked down the Matt Davis trail and back up the Steep Ravine trail. The mist was magical.

More photos of this hike are here.

I asked, "When is a revolution?"

2008-11-05T09:10:00.000-08:00

I like what Congress-
man John Lewis said last night about how we are witnessing a non-
violent revolution, a revolution of values, a revolution of ideas...

He said, "This man, young, smart, gifted, leader, is prepared to lead the American people and be a leader among the men and women of the community of nations. He has a vision -- he is the right man. He is so gifted. He is so decent. And he's so calm and deliberate. I think he will be a great president. He personifies the best of a John F. Kennedy, a Robert Kennedy, a Martin Luther King Jr., a Lyndon Johnson."

The comment made me think of this Brett Dennen song.
I Asked When - Brett Dennen

Equality for All

2008-11-05T09:07:00.000-08:00

I am sad about the outcome of proposition 8 but see the efforts of all those who came together to oppose it as a victory.

We need fairness and equality for all.

Be the Change.

2008-11-05T08:38:00.000-08:00

My friend, Shaheena is part this group called A Good Idea. Their mission is to inspire people to get involved in society by being a vehicle to implement people's positive social change ideas. They produced this video encouraging us to do more than just vote. I like it and hope you do too.

P.S. Shaheena can be found saying, "one billion" at (1:29-1:30).

Our new first family.

2008-11-05T08:09:00.000-08:00

Elation.

Love.

Pride.

Goodness.

Kindness.

Justice.

Fairness.

Dignity.

Intelligence.

Hope.

Congrat-
ulations Barack, Michelle, Malia and Sasha.

Welcome.

Freshman Rule

2008-11-02T21:03:00.000-08:00

On Halloween night, we went to an open house at the home of Sam's friend Leo. There were lots of boys who had a fun time trick-or-treating together and adults who enjoyed sharing some food and revelry but the best photo I have is of these freshman girls. (The one on the left is Leo's sister, Sophie.) These Eskimos stole the show.

Here is a Flickr set with the rest of my pictures.

Amy & Sebastian Return

2008-11-02T07:16:00.000-08:00

Last weekend was busy and full with my CASA Kids' Halloween bowling party and our neighbor's party on Saturday.

Then, on Sunday, we met my cousin, Amy and her husband, Sebastian for brunch at Lighthouse in Sausalito. The weather was gorgeous. We enjoyed strolling around the downtown area, checking out some art and sitting by the water. It was a short but enjoyable visit. We are glad they found time to fit us into their busy weekend.

There are more photos from Sausalito in this Flickr set.

Here is a link to the story about the time they went with us to see the elephant seals.

How Tall This Fall?

2008-10-29T04:34:00.000-07:00

I have had fun writing about pumpkin patch and Halloween memories.

Sam & Jon Halloween '03
St. Louis Halloween '01
Halloween '97
Halloween '98, '99 & '00
Too Cool '06
Waveland Ave '04 & '05
Star Wars '02 & '79ish
How Tall Past Falls

Cam posted some photos from our 2008 trip to the Petaluma Pumpkin Patch. Here are my favorites.

Impressively, we were, hopelessly lost inside of their corn maze again. Maybe some time we will try using the map.

Disappearing Pumpkin '06

These aren't the best photos of the day. I just thought this series was fun.

Pumpkin Chucking '07
Pumpkin Carving '06

For more photos from the pumpkin patch, check out the Flickr set.

Carroll's w/Tammi & Tracey '99
Carroll's w/Tracey '02
Carroll's w/Patience '03

Mary's Pumpkin Carving Pictures

2008-10-29T04:11:00.001-07:00

Cam already posted about our annual Maddux family pumpkin carving fest.

I wanted to share my photos with you too.

Here are a few.

Check out this Flickr set for the rest.

Happy Halloween.

Keep Breathing

2008-10-28T20:41:00.001-07:00

Last week, I discovered a new favorite song by Ingrid Michaelson. It had me skipping, swaying and spinning around light poles on the streets of San Francisco.

My favorite line is:
I want to change the world
Instead I sleep...

But all that I know is I'm breathing
All I can do is keep breathing
All we can do is keep breathing now

All that I know is I'm breathing
All I can do is keep breathing.
All we can do is keep breathing

All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing
All we can do is keep breathing now

Are you spinning yet?

Here is the song that was my introduction to her music.

If you were falling, then I would catch you.
You need a light, I'd find a match.

Cuz I love the way you say good morning.
And you take me the way I am.

If you are chilly, here take my sweater.
Your head is aching, I'll make it better.

Cuz I love the way you call me baby.
And you take me the way I am.

I'd buy you Rogaine when you start losing all your hair.
Sew on patches to all you tear.

Cuz I love you more than I could ever promise.
And you take me the way I am.
You take me the way I am.
You take me the way I am.

It is a nice expression of my feelings of affection for and appreciation of Cam.

Poverty - What is the answer?

2008-10-15T02:32:00.000-07:00

(I almost started out this post with the words, "Dear Friends" but don't want to sound like John McCain.)

Awhile ago, Cameron told me about Blog Action Day, an annual nonprofit event that aims to unite the world’s bloggers, podcasters and videocasters, to post about the same issue on the same day. They say their aim is to raise awareness and trigger a global discussion. (photo credit - read the story)

In 2008, the Blog Action Day theme is Poverty. Again, they say, Global issues like poverty are extremely complex. There is no simple, clear answer. By asking thousands of different people to give their viewpoints and opinions, Blog Action Day creates an extraordinary lens through which to view these issues.

Today, I am short on solutions. What I do have are stories. Last Friday, on my way to court to file a report about one of the kids I work to advocate for through CASA, I passed a woman who was making her bed for herself on the sidewalk. She was settling into her sleeping bag at around 3:45pm. On my way back, I walked past her curled up in the sleeping bag, apparently trying to sleep just steps from the entrance to the underground train. (photo credit - read the story)

At the bottom of the stairs, I passed a man holding a cup out, begging for change. As I walked away, I heard him frantically saying, "Please, God." "Please, God." "Please, God." "Please, God." (photo credit - read the story)

I stopped by my office to drop off a few things then headed out to where Cam was picking me up for the day. I passed a woman, on another street corner, begging with her two young children. They were somewhere between 5-10. The boy was covering his face with something. I imagine he may have been feeling shame. Maybe he just didn't want to see all of the people walking past them like they were invisible. The girl was doing her best to help her mom engage the crowd. I wanted to ask this woman why she was out there with her kids but I am sure that she wouldn't be if she felt that she had a better option. (photo credit)

Why didn't I stop? On my way from the ferry to my office, a walk of about 10 minutes, I walk past an average of eight homeless people. I just cannot stop and talk to each of them let alone begin to help. So, generally, I stop and talk to no one. (photo credit - read the story)

I do what I can, working, for very little pay, 30 hours a week to try to help the 30 kids who are on my case load at CASA. I volunteer with Project Homeless Connect.

On Monday, I had lunch with a friend who also wants to do something, has also worked in the non-profit sector and also volunteers but we don't have the solution. (photo credit - read the story) Note: These photos are not of the people I saw last Friday but they are photos of the people I see everyday. They are from an amazing set of photos taken of people on the streets of San Francisco.

What are you doing? What should we all do? Here's one idea.

If you haven't yet, please visit www.one.org and considering signing The One Campaign Declaration. As the video says, "We aren't asking for your money. We are asking for your voice."

Another way to have your voice heard is to vote. I am hopeful that if we elect a president who has a plan for addressing poverty, if we elect Barack Obama, that will be a step in the right direction but we all have to be willing to help. He says, I'm asking you to believe. Not just in my ability to bring about real change... I'm asking you to believe in yours.

Cam and his students have some ideas. What are yours?

Here are links to other things I have written on the issue of poverty:
Make Poverty History
BE EMPOWE(RED)
What I want for Mother's Day
We are African
Tonight's the Night the World Begins Again.
Why I live here
Stood-up by the mayor
Do I look taller?
I had to wear a hairnet.
Why I'm bitter (and appreciate him noticing).
Juxtaposition

Thanks for your interest and caring. Peace.

Help is on the way...

2008-10-13T09:05:00.001-07:00

This morning, Cam saw online that Angel Island had been engulfed by fire last night.

I have the day off today for Columbus Day. So, after dropping Sam off at school, I drove down to the end of our peninsula to get a look at Angel Island now.

Here is a Flickr set of my photos from Angel Island today.

Here is one photo of the blaze from last night. There are more amazing photos here.

This one was taken from the top of the Island on Saturday around noon. The Angel Island photos Cameron posted of our weekend adventures begin here. I'm thankful not to have been any closer to that fire, that everyone made it off the island safely and to have explored it so thoroughly before the blaze. I wonder how it will be changed. Another reason to look forward to the rain when things turn green and start growing again.

What was your most interesting day?

2008-10-09T08:59:00.000-07:00

One night last month, after work but before dinner Cameron, Sam and I went for a walk around our circle. Fairly recently, we learned that three laps make a mile. We'd like to walk at least a mile a day. Sometimes it happens.

As we were walking, we were talking about our days. Cam told me a bit about an exercise he had given his students at the Academy of Art. It sounded fun. I thought that we should ask each other some of the interview questions he assigned to them. The first one was to ask someone about their most interesting day of the past year.

When I asked Cam to name his, he almost immediately said it was the day we took the Maple Loop Pass hike in the Cascade National Forrest. During that hike, I said it was maybe the craziest thing I had ever done. (Hiking for hours through snow on top of unfamiliar mountains in sandals was pretty crazy.) I love the memories of that hike and our time in the Cascades (which I took to calling a second honeymoon) but I haven't gotten around to writing about it yet.

There are many family reunion memories I still want to document on the blog. When I started thinking about the reunion, I decided my most interesting day of the past 12 months was probably the day that Sam and I went paragliding in North Vancouver.

But before deciding on my most interesting day, I went back and thought about the past year, a month at a time. I remembered that a year ago, in mid September of '07, I started my job at CASA. We laughed that because of the job, I was late getting home and we were late carving our pumpkins last October.

In November, a bunch of relatives from my dad's side of the family came to the Bay Area for a Powell Family Thanks-
giving.

In December, Cam and I celebrated Christmas on our own and my dad had his surgery.

We spent New Year's in Chicago with Eric, Sarah, Ian and Avery. It is funny how now that I live in this amazing place, leaving it is such an extraordinary thing. We miss Chicago. I enjoyed going back there immensely.

Then, things started to get fuzzy. I couldn't remember what we did for Valentine's Day. I figure we both worked and that I fell asleep early on the couch. I remember it getting dark early in February and feeling like I was solar powered since I would lose energy as soon as the sun went down. Turns out that was the night we participated in the SF Pillow Fight. We also went skiing in February.

Off the top of my head, I couldn't think of specific memories from March. I'm glad we have the blogs to remind me of camping at Salt Point, my mom's visit, the Shawn Mullins concert...

In April, when Cam mentioned his birthday, I remembered the amazing time we had at Yosemite with Jim and Liz.

May was pretty fuzzy too. (We participated in Pangaea Day and experienced Beard Papa's cream puffs on Mother's Day, went to back to Maker Faire and took Sam on his first cable car ride on Memorial Day.)

In June, I knew we went to DC but had forgotten about our trip to the Monterey Bay Aquarium. There was the Powell family reunion, in northern Washington and Canada on July. August was full of birthday bonfire parties and Sam starting middle school. This month and last month, there has been a lot of focus on election stuff. I wonder what I will remember from September and October of 2008 when I try to recall them in 2009.

Hopefully, I will remember the hike I took with Sam and Leo the last Saturday in Sep-
tember. We didn't have a camera with us. Cam was in the city for Lily Bunka. There was no food in the house so I took the boys out to breakfast then we climbed a different trail to a different part of Ring Mountain. When we arrived at the enormous rock configuration, that was our destination, I sat in the shade, reading a captivating book while they climbed and played. I didn't know what to expect when they started calling for me to come and see what they found.

In the trunk of a tree, they had discovered an opossum. All I could see was the side of its head. It didn't seem to be moving and I was surprised that it was still there after all of their yelling and coming to get me. I guessed that it might be dead but they said it was blinking and that its ears had moved. I praised them for not poking at it with the sticks that were between them and the tree and suggested that if it was alive, it was likely pretty afraid and that we should back away from the animal we had cornered before it felt the urge to defend itself. As I was backing away, after them, the opossum suddenly turned its head to face me. It was starting and made me make a silly, startled noise. That was interesting.

While writing this post, I've been looking through pictures from the past 12 months and am reminded of many little adventures, like that one, that I hadn't shared yet.

I hope I will remember dancing with Cam and Sam last weekend to Ben Kweller at the Hardly Strictly Bluegrass Festival. My favorite songs were Falling...

and Penny on the Track. I wait. I wait. For something good. For something great. Go. Just go. Find a place that you don't know. I see. I see all the things that I should be. Play. Just play... I try... I wait. I wait. For something good. For something great.

Thanks for letting me reminisce. What was your most interesting day of the past 12 months?

I changed my mind, "Don't vote."

2008-10-01T19:22:00.000-07:00

Juxtaposition

2008-09-10T19:23:00.000-07:00

Juxtaposition: an act or instance of placing close together or side by side, esp. for comparison or contrast.

I had a weird day. As a volunteer with Project Homeless Connect, I spent the day with a woman who currently lives under a bridge, sitting with her while she talked to a medical professionals, making sure they were listening and responding to her, keeping her company while she got her hair cut, helping her get some food, listening to her tell her story. At the end of the day, I rode in the van that took her back to her home under the bridge. She's 33 (3 years younger than me).

Then, tonight, I went to a mandatory parent meeting at Sam's school where after we paid for damage insurance, they gave each of these 6th graders brand new MacBooks (laptops).

I'm glad my child has so much but don't know how to reconcile that with so many having so little. It reminds me of this quote from the FDR Memorial in DC.

The cult is called America...

2008-09-10T06:53:00.000-07:00

This morning, I was feeling tired of the fighting and needed some inspiring. I found it here.

I loved this video when I first saw it a week or so ago but have been trying to not be too over the top in my adulation of this man and chanting his name did seem a bit excessive but I'm feeling discouraged at the idea that some people really think the other option is viable.

I agree with what Will.i.am said and hope you do too.

We are the ones we've been waiting for.

Hope. Act. Change. Vote.

Ones Song
by will.i.am

people say Obama’s words are just words...
but...
when was the last time "words" weren’t important...???...

when was the last time a great leader didn’t use words to lead...??...
when was the last time a person didn’t use words to describe how they felt...?...
when was the last time "words" weren’t empowering...?...

and we can all recall the last time "words" were used to divide us and install fear...

Bush used words to fear us into voting for him the second time around...
terror this...
terror that...
nuclear here...
weapons of mass destruction there...

and those words effected a lot of people’s choices...

"enough is enough"...
let’s rebuild...

let’s change ourselves...
let’s allow positivity to guide us...

let's take action....
let’s activate our passion...
we are Americans....

and this is the first time in forever that someone running for president represents "US"...

some say this is all excitement...
I call it “proud to be an American”...

some say this whole Obama movement is "cult like"...
well...
if it comes across cult like...
then...
the cult is called America...

the Obama movement is connecting America.
and it has made "US" realize our importance...
the youth is excited and activated...
adults are passionate and motivated...
the elderly are proud to know the country they built is in safe hands...

we are one...

for too long politics has been corrupt...
separate from the American people...
with agendas that go against what the American people "need"...
education...
health...
safety...
jobs
etc...

politicians have spoken a different language...
making it so the youth and poor people feel as if voting was only for the wealthy and old people...
making "US" feel as if "we" had no voice...
making "US" feel powerless...
making it feel like if "we" did vote it wouldn’t change anything...

but wait...
that did happen...
some of us voted, and it didn’t change anything...

we were in the dark...
we had no voice...
we were powerless...

because America was not a united America...
and "they" spoke a different language...
and they had an agenda different from our well being...

correct me if I’m wrong... or speak up if I’m missing something...

we want education, health, safety, and good jobs...right???...
oh yeah...
and "a healthy planet to live on"...

but here we are...

in a war... poor education... poor health programs... the dollar is down... the planet, polluted...
the rich, richer... and the poor, struggling...
with sky high gas prices to top it all off...

and now even the rich aren't really rich internationally because our dollar is has fallen so far down...

in our slumber... a very small few got really rich...

because when you’re sleeping...

"it’s hard to change agendas"...

we know what happened in 2000 and 2004...
but in 2008...
it’s different...

we are awake...
and there is a movement...

and "it’s hard to change a movement"...

last time "we" didn’t have a movement...
America wasn’t united...

and now "United and "Standing"...for something...
we know the power of "US"...
and we have a person who represents the "U.S."...

"US"…

"we are the ones we’ve been waiting for"...

I’m proud to be an American...

will.i.am

Make-up Birthday Bonfire at Muir Beach

2008-09-05T05:24:00.000-07:00

When we started planning Sam's 11th birthday party, it sounded like at least two of the friends he wanted to invite weren't going to be able to make it. So, we decided to host a make-up party (like last year) for Wiley and Eric. It turned out that Eric was able to come to the first party after all but we asked him to come along on the second one anyway. Last weekend, on the 30th of August, while Cam was visiting the Maddux clan, in Chicago, I took one car load of boys with me to the beach.

When Cam's around, I don't normally make the fire. I don't normally carry firewood either. This time, I carried some but the kids helped by carrying some of the heavy bundles of firewood too. Sam and Wiley had been working together to transport one bundle, sometimes carrying it then turning it end over end or rolling it. After carrying one bundle of his own, Eric went back and picked theirs up for them. I hope they weren't sore the next day. I was, embarrassingly.

After two trips from the car, when all of our stuff was unloaded, the kids headed towards the water. The weather was lovely. We didn't have as much wind this time but it may have been a bit cooler. No one went swimming. They contentedly built elaborate and interesting sand sculptures, instead.

I started trying to build a fire. I'd brought what I thought was a fire starting log (with all natural ingre-
dients). The directions said I didn't need paper so I didn't bring any. I'm not sure why I thought one box of already-opened matches was plenty. I really thought I would only need a few. Of course, the wind kept blowing the matches out and I wasn't sure what I was going to do.

Humbled, I appro-
ached some folks on the beach who had a fire success-
fully burning. They had a lighter (the kind you use to light a grill) which they generously lent to me. The boys came up from the beach and wanted to help. Eric suggested we use one of the blankets as a wind block. Great idea but I still couldn't even get the lighter to stay lit. Discouraged, we returned the it. Thankfully, a man named Ernie took pity on me and came over to start our fire.

He suggested moving the materials down behind the mound I had them sitting upon to use it as added windbreak. Then, he asked for paper. I did have the instructions for our hike to Pirate's Cove, "Seek it if you dare." Since none of the kids wanted to hike, we happily crumpled them up and burned them. At Wiley's mom's suggestion, I'd brought things to read. While I didn't get to read the Time magazine with Barack's picture on the front, it made great kindling. Cam pointed out that my magazine wasn't all natural or non-toxic but it burned.

The boys roasted hot dogs and marshmallows, drank their natural soda, then started burning sticks. I told them how, "No playing in the fire" had been a rule at the first birthday party. A few minutes later, they were still curiously experimenting with fire on the end of their sticks. I thought about calling them out on it but I also thought about how they will be having bonfires on their own before we turn around twice. So, I decided to just document and observe.

Later, I remembered how when I was young, my mom told my brother and I that we could play with matches whenever we wanted, provided an adult was around. I guess I think the idea has some merit. We know kids are curious and will experiment. I believe it is safer for them to do it in front of us than behind our backs.

In some of the shots, taken through the flames, the kids look awfully close to the fire. I think some of them are beautiful and hope the boys' parents will agree.

I want to thank them for letting their sons come out and celebrate with us. It was great fun.

This Flickr set has more photos of the make-up birthday bonfire at Muir Beach.

Ariel's Back - Meet Jac

2008-09-02T05:19:00.000-07:00

For about nine months, from early December of '06 to early September of '07, my cousin Ariel tried out the idea of living and working in the Bay Area. She overcame struggles and achieved successes. We had lots of fun exploring and spending time with her.

However, last fall, she decided to return to the Midwest to reconnect with family and friends there. Then, she went back to Orlando to take a few classes. There, she met Jac. The two of them conspired to try living and working out here when he finished his program.

They arrived in August. Sam and I had dinner with them once before they headed down to the Monterrey Bay area to work for a couple of weeks.

The weekend before last, on the 23rd, Cam joined us and we all took a hike to Tennessee Valley Beach. It was a lovely day and great fun being with them. We're glad they are here. Here are more photos of our hike.

DC in Detail

2008-09-01T11:50:00.000-07:00

On June 8th, I posted a rough recap of our first day in DC (that Saturday, June 7th). I promised to repost an edited version with photos. Here goes.

We woke up and bolted out of here at 7:45 am, rushing to the Metro to try to get tickets that would allow us to go to the top of the Washington Monument, later that day.

They they start giving them away at 8:30am so we thought we had left in plenty of time but we actually got the last set of three together. I called my folks to say, "Hi" but wasn't up for talking much. It was still before 6am in California. I was hot the weather was muggy and I hadn't had breakfast or any caffeine. We got the last 3 tickets for the last slot of the day which was what we wanted as we had tickets for other activities at noon and 7pm.

Next, we walked to the Jefferson National Memorial. It was beautiful and impressive. I had never seen it up close. I liked reading the words to the Declaration of Independence from inside the monument.

A kid from Wisconsin asked Sam where he was from. When he said, San Francisco, they asked, "You've been on the Golden Gate Bridge?" When he answered, "Yes," he was congratulated. Another kid from the group said, "We should take a picture w/this kid." They did. Outside, a small high school (or middle school) band was playing the Star Spangled Banner and other patriotic songs. It brought back memories of traveling and performing with the band when I was in school junior high and high school.

We walked past where the Bureau of Printing and Engraving, where they print the paper money. (Which we learned isn't actually made of paper but fiber-like cotton, according to our tour guide that night.)

Outside the Holocaust Museum, I admired Ronald Regan's words that were engraved on one of the walls. Since we still had some time before our tour of the Holocaust Museum, we had some breakfast, including a knish. It was nice to cool-off, relax and refuel. The ladies made a delicious iced vanilla coffee drink for me. The caffeine and air conditioning helped.

We decided to go check out the WWII Memorial. That morning, my mom mentioned that it was one of the newer memorials and none of us had seen it before. There wasn't much shade so our walk there was hot. I was moved by Bronze panels, which told stories of people's experience's during WWI, on the walkway to and from the fountain.

From there, we saw the White House in the distance, as we walked around the Washington Monument, instead of cutting through the center of the park, to stay in the shade of the trees on the periphery.

I wish we'd have been there a couple of weeks before, to witness the Forgotten Children Exhibit. For one work week, CASA staff, volunteers and supporters placed 850 life-size displays of foster children at the Washington Monument, each day. These displays represented the 850 children who enter the foster care system on a daily basis. By the end of the week, 4,250 displays stood in front of the monument, representing the 4,250 children who entered foster care during the workweek. (photo credit)

Near our admission time, we returned to the Holocaust Museum. The first exhibit we toured was in the basement. It featured the Nazi Olympics held in Berlin in 1936.

Before entering The Holocaust's permanent exhibit, each of us selected the ID card bearing information about a person who was Jewish and their experience, during the Holocaust. Two of the three people, whose ID card we selected, died. From what I understand, seems to be representative of what happened to the millions of people were wrongly persecuted, imprisoned, tortured and murdered during that time.

Walking through the exhibit that day, seemed to be the first in-depth telling of the history of the Holocaust that Sam had experienced. I was proud of his seriousness and willingness to watch, listen and learn. I learned much too.

Walking through Daniel's Story, a Child's Story of the Holocaust, helped person-
alize the infor-
mation and bring the experience to life for us. It was a lot to absorb but incredibly important. Awhile ago, as a family, we started reading The Boy in the Striped Pajamas by John Boyne. I would like to finish it soon. I just saw that they are making it into a movie that will be released on November 7th.

We thought about eating on the grounds of the Washington Monument but it really felt like we were in a sauna outside so we opted for another hour of air conditioning and ended up having lunch in the cafe of the Museum of Natural History. I was happy to be able to have an egg plant sandwich and a salad (even if they were just OK). Sam shared his fries and Cam and I split a chocolate bar.

Our next stop was the Washington Monument. Before arriving in DC, I'd been saying that I'd wanted to go to the top of it my whole life. Standing at the base of it that morning, I remembered that I had been to the top of it when I was here with my 6th grade class. What I'd remembered before this visit was that I hadn't been able to go to the top the last time I was here, when Sam was three. This time, we had tickets.

Thankfully, the bench for people with tickets for the 4:30pm tour was in the shadow of the monument. Sam and I reminisced about how we liked to go to the top of the Arch when we lived in St. Louis. We also talked about how we had gone to the top of the John Hancock Building and the Sears Tower in Chicago. I just remembered that I also called him from the top of the Empire State Building, when I was in NYC for work, when he was five. The view from the top of the Washington monument is impressive on each of the four sides.

Once we were back on the ground, we took a walk along a park, past the White House, to the National Archives building. We talked about how this was the place where Nicholas Cage stole the Declaration of Independence in that National Treasure movie. We stood in line to get inside the building then stood in line to get to see the documents. It was memorable to be that close to the Constitution, Bill of Rights and Declaration of Independence.

Afterwards, we walked towards the Capitol, along another park and arrived at Union Station. In a bit, we'd catch a trolley that would take us on a night tour of the monuments. In the meantime, we enjoyed some well-deserved Ben & Jerry's ice cream. Of course, the child opted for a fruit smoothie. My Chunky Monkey (banana ice cream w/walnuts and chocolate chunks) in a waffle cone was quite enjoyable.

Jazzy Jan was our driver and tour guide on the trolley. She was infor-
mative, humorous and fun. She kept us moving but made sure we had just enough time at each stop.

The first stop was at the Franklin Delanor Roosevelt Memorial. I hadn't been to the FDR memorial before. His quotes about social responsibility are inspiring to me. (photo credit)

(As I was writing this post, I received a text message from Barack Obama asking me to make a donation to the American Red Cross. I did. You can too.)

The sunset was lovely.

Our next stop was near the Lincoln Memorial. We walked over the the Vietnam National Memorial first.

Explaining to Sam that each name, which took up such a tiny bit of space, represented a life made the magnitude of the wall's size significant.

I told him about how I'd been there with my family when I was about his age.

Here is the photo, I mentioned previously, of my brother standing next to my dad at the wall.

I remember my dad being moved when he found the names of men he knew on the wall.

After the Vietnam War Memorial, we walked up the steps of the Lincoln Memorial to go meet Abe. He is impressive.

We read the Gettysburg Address and then sat on the steps of the monument, looking out on the Reflecting Pool, the WWII Memorial, the Washington Monument and the Capitol in the distance.

There was a storm brewing in the area and we enjoyed seeing streaks of lightning in the distance. Sometimes, the lightning would light up the clouds.

Before returning to the trolley, we walked through the Korean War Memorial. The faces of the men looking out at us were captivating. (photo credit)

Our final stop on the trolley was the Iwo Jima Memorial. We learned that the statue, of the men raising a flag on the top of the island's highest point, is the largest bronze sculpture in the world. (photo credit)

We learned other interesting pieces of information, as it started to rain and we rode the trolley back to Union Station. From there, we took the Metro back to the stop closest to our hotel and went back to the room to rest and relax.

After a shower, I watched a video of Hilary Clinton calling on her supporters to help elect Barack Obama the next president of the United States. It was a day full of patriotic experiences.

Cam's 91-year-old grandmother, Lurene and his dad's sister, his Aunt Mary Lu, came into DC, from Maryland, to spend the day with Cameron and Sam. They went to the Native American Museum for lunch. I'm glad I was able to to see them for a few minutes before I headed off to my conference. It sounded like they had a great day.

Cam's does an effective job of summing up the rest of the trip with this list.

We were all learning, each day. Maybe another day, I will write a separate blog post about how I got to go to Capitol Hill and meet with representatives from Congress, including Speaker of the House, Nancy Pelosi's cheif of staff, asking them to do more for our kids. Their interest and concern was moving.

More DC Memories

2008-08-23T09:22:00.000-07:00

Cam and I have both written about the trip our family took a trip to Washington D.C. in early June but I wanted to share a few more memories and my favorite photos from our time in DC.

On the way there, each of us was excited about taking our first Virgin America flight. I enjoyed choosing which music videos to watch and being able to order food from a menu. The cheese and fruit plate became a fast favorite.

After landing, we took a cab to the Historic Omni Shoreham hotel where the National CASA Conference was being held and where we would be staying.

Just blocks away, on Connecticut Avenue, we were excited to find three different India restaurants.

That first night, we relaxed and enjoyed the pleasantly warm weather while sitting outside and sampling the vegetarian offerings at Little India.

After dinner, intrigued by the lions and light poles on the nearby Taft Bridge, I talked Sam and Cam into walking across it to see what we could see. (Lion photo credit)

(I love walking across bridges.)

On the other side, (bridge photo credit) we ended up on Embassy Row where we watched party goers arrive for an elaborate formal event at the French Ambassador's Residence.

It appears that the event was the Washington National Opera's Annual Opera Ball tickets were $1,000 per person. We did not have a ticket but enjoyed the musicians performing outside and the greeters in their dresses woven with lights. (photo credit)

I'll write about the next day, the day the three of us spent exploring, soon. If you haven't already seen it, here is a small Flickr set of photos of us getting to DC.

"When you get to the top of the mountain, remember me."

2008-08-23T07:28:00.000-07:00

While all the buzz, this morning, is about Barack Obama selecting Joe Biden to be his running mate, (Cam thinks this is a solid choice and since he's the one who first told me about Barack, that's enough for now.) what I want to talk about is a group I just joined called Rural Americans for Barack Obama.

Obama is reaching out to Rural America. I appreciate him coming up with a plan to bring hope to those of us from there. I'd rather be hopeful than bitter.

In Dave Stewart's, "This is My American Prayer," Forest Whitaker, Cyndi Lauper, Macy Gray and others sing "When you get to the top of the mountain, remember me."

If you want to show those in Rural America you remember them, join Rural Americans for Obama.

Bowling Buddies

2008-08-17T22:15:00.000-07:00

Since Sam's will have his first day of 6th grade this week, I thought it was time to get this photo and story posted.

On his last day of 5th grade, Sam's class went bowling. I was there too. He had fun with this group of friends and remembers wining, by one point, with a score of 97.

We've had a wonderful summer. It went too quickly; although, I'm sure fun memories await.

A Series of Giant's Games

2008-08-13T07:38:00.000-07:00

In May, Cameron took Sam to see Greg Maddux pitch at Giant's stadium.

Cam found seats right next to the Padre's dugout.

It sounds like they had a blast.

Here are the pictures to prove it.

A day or two later, Sam's 5th grade class was scheduled to go to a Giant's day game for a field trip. That morning, there was a principal's assembly, where Sam was recognized for his positive attitude. Afterwards, on our way to the car and into the city, Cam and I got a call from Sam's teacher. She said one of the parents who was supposed to drive and help chaperon had canceled. Could one of us come to the Giant's game in her place? I had to be in court but Cameron decided he could meet them there that afternoon. What a dedicated parent. Here is a link to this photo of Sam and Leo at that game.

On the first of July, the night before Sam headed to the Midwest for time with family there, Cam took us to the Cubs vs. Giant's game. Ram came too. They were rambunctious. We had fun. Here are some silly photos of us from that night.

Birthday Bonfire at Muir Beach

2008-08-03T15:58:00.001-07:00

As it says on his blog, On his 11th birthday, Sam went kayaking in Birch Bay, Washin-
gton. The following day, he tandem-paraglided down Grouse Mountain in North Vancouver. While those were remarkable experiences, he didn't get to celebrate with his friends from school.

So, last night, we hosted a birthday bonfire celebrate at Muir Beach. Ten 11-year-old boys were in attendance.

We'd planned a hike to Pirate's Cove, as the beach is usually foggy and cool this time of year. However; yesterday, the consensus was that it was a fun day to go for a swim whether you had swim gear and dry clothes or not.

When they boys first got wet, I was worried about what would happen when the fun stopped and they were cold. Thankfully, the fun never stopped. There was no complaining which I greatly appreciate.

Thanks to Todd and Spencer for joining us. We also greatly appreciate Forouz and Mohamed who drove a carload of boys home. Thanks to Linda who was going to drive and to the rest of you for being able to pick your boys up from the Cove a little early.

Please enjoy this Flickr set of photos from the party. In our eyes, it was a huge success. We hope you agree and look forward to taking that hike to Pirate's Cove another day.

Dispatch deserves their own post.

2008-08-03T08:52:00.000-07:00

This morning, there was a comment from Brian Vander Ark's new record label, Second Motion Records out of Chapel Hill, North Carolina, on my blog. They commented on my post of rantings about some of my favorite music, thanking me for helping promote BVA.

While rereading that post, I realized I hadn't posted a link to the Dispatch song, Elias. I wanted to share it with you. So, I searched this morning and liked the video I found so much that I think it (and the story behind it) deserves its own blog post.

As I understand it, Elias is a man from Zimbabwe who Chad Urmston, a member of Dispatch, met when he lived in the country in 1994.

I'm told the first 3 verses are in sung in Shona, a language spoken in Zimbabwe. The first part deals with friendship and means that when you're feeling bereft of hope, don't be afraid to lean on your friends to get you through.

The second part is a typical greeting in Zimbabwe which asks, "Are you strong?" The reply is, "I am strong if you are strong." And then the greater replies, "I am strong."

Knowing Elias, along with his wife, Servi and their sons Honest, and Manuel had a strong impact on Urmston. This song and the Elias Foundation are just two results of their inspiration.

Today, I also found the website for the Dispatch Foundation, whose mission is: To empower people everywhere. To build communities. To reach people in places like Zimbabwe where the world needs to respond. Because everyone should have a song in their lives.

After watching a video where the band asked me to Join Zimbabwe's Song, I responded by adding my name to a letter, signing a petition and now I'm telling a friend.

Will you Join Zimbabwe's Song?

All this inspiration was found thanks to Second Motion Records's comment on my blog. I look forward to catching up on Brian Vander Ark's latest music and checking out Athenaeum and Gemma Hayes, two artists on their label they said I would surely like based on my musical taste. Who knows, maybe soon I'll be writing about the way they have inspired me too.

Better prepared.

2008-08-01T17:46:00.000-07:00

Late, last October, Cam and I had our first real earthquake exper-
ience. Oddly, we were signed up to go to an earthquake preparedness class that weekend. After the class, we took some steps to try to be more ready.

At the end of Sam's fifth grade year, his class went through an earthquake preparedness class too. Making sure his family was ready became part of Sam's homework. That time, we stocked up on the requisite water, a first aide kit, some canned tuna and fruit cocktail.

Thankfully, my brother and sister-in-law in LA are fine after the recent 5.4 quake. I'm not sure we can ever really prepare for "the big one" but at least we are one step closer.

Climbing Hill 88

2008-07-27T11:17:00.000-07:00

This week, Sam's friend, Leo was back from several weeks of traveling in Europe with his family.

We were happy to have him spend the night with us on Friday.

The two of them giggled, laughed & played.

Before Leo's trip, during another sleep-over they played differently.

That day, we had taken them on a remarkable hike to the top of Hill 88.

Cam had discovered what a cool place this was another day.

I'm glad he shared it with us.

This Flickr set has more photos from our hike to the top of Hill 88.

It felt like flying.

2008-07-20T19:34:00.001-07:00

When I looked into things to do in Vancouver, at the top of my list was going to a place called Grouse Mountain. I wanted to take Sam ziplining. They also offered tandem paragliding but I thought that was a bit too far out.

It turned out that Sam wasn't quiet heavy enough to zipline but he could go paragliding. He was most interested in this activity as well so we decided to go for it. It was the day after his 11th birthday.

I loved it. The views were beautiful and amazing. The experience was fantastic. It felt like flying.

Before we landed, Todd, the pilot on my flight, asked if I liked roller coasters. I said I did. Soon, we were spinning. It was a thrilling, exhilarating experience.

Sam's pilot, Herminio took him spinning too

Still photos (and more about the experience) to come...

Congratulations Kelley and Andre

2008-07-20T14:43:00.000-07:00

I have the pleasure of working with a wonderful person named Kelley.

Kelley has an enthusiasm that is infectious.

Her kindness, warmth and friendship are valued and appreciated.

Today, I am writing to thank her and her husband, Andre for including us in a couple of cele-
brations they've had since we've known them.

We enjoyed joining them at Pajaro Dunes to celebrate Andre's birthday last fall.

Their recent boat-warming celebration was fun too.

At CASA, Kelley has served in many roles. She has decided to leave at the end of August to pursue other passions and interests. I wish her well and know she will succeed.

In the future, I hope that we will stay in touch with Kelley and Andre.

This Flickr set has photos of their boat party that I took for them.

Sam's 1st Cable Car Ride

2008-07-20T14:27:00.000-07:00

Awhile ago, Cam and I were surprised to hear Sam say he hadn't ridden a cable car yet.

Cam already wrote about our Memorial Day, when we went into the city to ensure Sam had this experience.

Here are some photos I wanted to share from that day.

Rantings about my favorite music...

2008-07-20T08:12:00.000-07:00

As I've mentioned before, I am enjoying connecting with folks via Facebook. When I was creating my profile, it asked about my favorite music. I've decided to transcribe those rantings here and replace them there w/a list so that I have room to add new artists whose music I am getting to know. Below is what I originally wrote.

Narrowing things down is always so hard for me. Any list of my music favorites seems incomplete. I usually start with Shawn Mullins because his music is very meaningful to me.

I bought a Linkin Park song this week, I like that "Shadow of the Day" song they've been playing on the radio lately. Right now, I'm listening to my Howie Day station on Pandora. Cam and I saw Howie Day in Chicago and like him a lot.

Tonight, in addition to Howie, they've played songs by the following artists I like, Ben Harper, Dave Matthews Band, Snow Patrol, Augustana, Train, Better Than Ezra, Weezer, Dashboard Confessional (I can't name many (or any) of their songs but I can not not sing along with For You to Notice. I need to buy it. Gosh, it is their 72nd most popular song.)

Blues Traveler (MRZ & I saw them during Memphis in May, along with Ben Harper.) and now they are playing Josh Kelley. I like hundreds (if not thousands) of other artists too but maybe this will give you an idea of my musical taste.

There are the Goo Goo Dolls, finally being served on Pandora. Where would I be w/o the Goo Goo Dolls? Their concert at my first Memphis in May festival, with my friend Sherry, was a turning point in my process of finding Mary. Later, the love, understanding and encouragement in their songs would sing me through hard times. "There's no time left for losing. When you stand, they fall."

More they played tonight... Jack Johnson, Damien Rice...

More music: Jen Chapin (Cam got her CD for me after hearing her on a flight home from some business trip and thinking I'd like her music. I love it. Later, I found out my friend, Melissa Rose Ziemer had played with Jen.)

Brian Vander Ark (Cam and I saw him open for The Samples at House of Blues show where we were enamored with each other and his voice. - He has a Jen Chapin connection too.)

Rachael Yamagata (Melissa said her friend who had played with Bumpus had a solo CD, I bought it to check it out and support her friend. It turned into one of our favorite CDs of the year.)

The Nadas (They were the only ones inviting me out on weekend nights when I was first single, Sam was having visitation with his dad and all my friends were home with their husbands.) Hello Dave (Were on the FreshTracks tour with the Nadas. I met MRZ at one of their shows. I'd been alone in St. Louis, Sam was in Iowa and again, the band's was the only social invitation I had so I drove to Carbondale where I met Melis.)

Cowboy Mouth (saw them at Memphis in May with Sherry and Shay and again at HOB, Chicago with Stacey as she was helping me try to find a job there. Thanks, Stace.

Lifehouse, Collective Soul, Pat McGee Band...

What about Dispatch? Through Pandora, I was introduced to the song Outloud. I didn't know anything about Dispatch except that I couldn't stop singing that song. I was thrilled to learn about how after visiting Zimbabwae, members of the band were inspired to do something about the poverty and death they saw there. They've written music inspired by the culture and people they met there (I love Elias from All Points Bulletin (Live)) and held concerts to raise funds to make a difference in the area.

How could I forget Pete Yorn?

New artists I added to my Facebook list today include: Newton Faulkner, Matt Costa, Pink, John Mayer.

Brett Dennen and Yael Naim both had videos I enjoyed on the Virgin America flight to and from Seattle.

Again, this is an incomplete list. Just sharing. Thanks for caring.

Bunch of Balloons

2008-07-11T03:07:00.000-07:00

At the conclusion of a recent CASA volunteer app-
reciation event, one of my lovely co-workers started popping the balloons. There was no glee involved, she was just trying to dispose of them.

Without really thinking, I said, "You're murdering the balloons."

She explained that she didn't have room in her car to take them, that she'd tried to donate them to a hospital but been turned down because of the latex... I said, I'd take them.

While I was gathering up my things, they brought maybe 20 balloons together into a bouquet and handed them to me.

I felt like I might float off like Piglet from Winnie the Pooh. Several times, on my way to and from the ferry, I ran and jumped, trying to get the feeling of being lifted but; alas, I was more like Eeyore.

On the ferry, the balloons received much attention and I was able to pass some out to a couple of awe-struck children.

When I got home that night, Sam was already asleep but the next morning, he woke up to see the ceiling above his bed covered in balloons. He had so much fun with them.
(The orange stripe is from his Giant's game w/Cam.)

Leo came over for a sleepover and helped him try to defeat them but the balloons are resilient.

Weeks later, some still remain.

Good to know there are some perks to having your mom work as an advocate for other kids.

This Flickr set has more photos of Sam attacking the balloons.

Sam's 1st Shiner

2008-07-09T04:51:00.000-07:00

On his second day of X-Sports Camp, Sam gave himself a beautifully impressive shiner. When Cam came to pick him up, he though he was wearing eye make-up.

Sam explained that when learning how to do a flip there are lots of things to remember.

They seem to flip hundreds of times a day.

Sam said that once, after tucking his knees, he forgot to rotate.

Ouch.

He was a real trooper. They wore them out at this camp. He was tired and even a bit sore after the first day. He said he wished he had some time off between classes but went back happily the next day. Then he got the black eye.

We were impressed with how both he and the camp handled it. They just gave him some ice and encouraged him to get back out there. He did.

He was up for camp on Wednesday, Thursday and Friday too.

He says he still hasn't quite learned to do a flip but he intends to.

We were impressed with what he did learn and have him signed up for a second week of camp in July.

Sam seemed proud of it in the pictures Cam took.

I thought it made him look tough. Cam thought it made him look pretty.

We all joked around about it a lot.

I tried to capture the evolution of the black eye by taking several shots of Sam over the next few days. There isn't one great picture but there are lots of interesting ones.

Go to this Flickr set if you want to see them.

Dearest Els,

2008-07-04T09:44:00.000-07:00

It was wonderful to talk with you on your birthday today.
I'm sure the next time we see you it will be this moving.

More music I like lately...

2008-07-04T09:13:00.000-07:00

We flew to DC on Virgin America. They let me watch music videos. Below are some I enjoyed. (I own all of the songs now too.)

Mr. Pitiful is my favorite Matt Costa song so far but I like it so much that I bought Songs We Sing and Unfamiliar Faces on iTunes. Check out this quirky, endearing, fun video. I love seeing familiar scenes that were shot in and around San Francisco. I want to try out his one man band machine.

I liked the questions Pink asks in Dear Mr. President. Her song was stuck in my head for days after the flight (the other two were too).

I loved this John Mayer song the first time I heard it. The video for Say compelled me to watch The Bucket List. Cam watched it with me. We enjoyed it.

Even if your hands are shaking... And your faith is broken... Even as the eyes are closing... Do it with a heart wide open... Say what you need to say. Say what you need to say. Say what you need to say. Say what you need to say. Say what you need to say. Say what you need to say. Say what you need to say. Say what you need to. Say what you need to. Say what you need to say...

Sam's 1st Week of X-Sports Camp

2008-06-29T21:24:00.000-07:00

Here are a couple of videos of Sam from the end of his first week of X-Sports camp.

He's running from the left at the beginning of this video.