The Weekend of Oz

On the night of Jan 9 I was looking forward to a nice dinner with Cat, Maddie, and Dylan. I had been on the phone with Cat during the day and she said we should celebrate the 1 year aniversay of my new stem cells. I'm way up for that, I thought, maybe even drink some beer and toast the wonderful donor who made it all possible. After getting home from work (yes, back at work now), the fam seemed to be ready except there was a glitch. It seemed that Cathie's very good friend Anne had her mother flying in from Colorado, but Anne could not pick her up. To convince me of the predicament, Cathie had me listen to Anne's message on our answering machine. Anne was really in a pickle and sounded desperate (I'll leave it at that). I was ok with the whole thing anyway, cuz the plan was to pick up Anne's Mom and then go to a restaurant near the airport. Anne's son Cody would pick up his grandma soon thereafter. It was a small favor we could do. We drove down to the airport but I had not taken my jacket. Upon arrival, I wanted to remain in the car with the heater on. Cat said, "No, I dont get to see you enough during the week, you must come into the terminal with us". Wow, what a sweetie, heh? I did not put up a fight, went along, but thought it was kind of strange. We walked into terminal 2 to the foot of the escalators where there are also some arrival/departure monitors. Mmm, no flights scheduled to arrive from Colorado. Hey Cat, "where is she arriving from?". "Dallas". Mmm. Only a few minutes passed and I saw this gentleman at the top of the escalators, starting down. I noticed him because he seemed to wave down to the four of us, no one else was around. When he got down to our floor and walked towards us I realized that we would have more company to toast my donor. Walking towards us was Steve Evers. I hadnt recognized him at first from the picture I took off Inka's blog last August. But this was the man who made it possible for me to be standing there that night, with my family. This was the man whose blood now literally flows through my veins. And now he was conducting secret operations with my wife! Ha! Well, they had me totally fooled they did. For the record I did NOT EVEN REMOTELY imagine that that was about to happen. You can rest assured that you can now hire Cathie to arrange your future surprise parties. I truly hope that her talents continue to be used only for 'the force'. If she ever decided to use her talent for duplicity to benefit the 'dark side', I will be in deep doo doo. The encounter with Steve at the airport set one of my surreal mental bookmarks. I'm still very choked up about it. Steve gave me a hug right off the bat and made me feel like a brother. I was beside myself, whatever that means. But really; Steve's blood and mine are an identical DNA match so... I was beside myself. Um, Yeah... I wanted to wait around for Anne's mother but Cathie said, "It's alright honey", as she patted my head and showed me to the automatic doors. "Cody will pick her up later". Well, I guess that was awright. My head was spinning anyway. As we made our way up i15 to dinner at The Claim Jumper, the 5 of us talked like a group of monkeys who've discovered a new mango tree. We had a great evening. I've been holding this tidbit back cuz I wanted to establish how we spent some serious time with Steve before I developed an impression. Steve is a total angel! This may still be a little pre-mature because there is more to this story, but I have to tell you. He and I got along like brothers. He is such a gentleman and a kind, caring, patient soul. My heart was really taken by this guy. Cathie said it best a couple days ago, "I'm going through Steve withdrawal". He took a big chance when he accepted Cathie's invitation weeks ago to visit here for this surprise, to spend a weekend with people he's only known from 2 letters and 2 phone calls in the last 6 months. I picked him up at the Double Tree and drove him to the airport for a 6:20am flight home Monday morning.

Sometimes, things work out totally different than they first look. Going back to the diagnosis of my bone marrow disease (MDS) 3 years ago. It seemed so final. The many sick days ahead, the early end to my life, the ensuing chaos for my family. After last weekend I cant imagine my life taking any better route than it has. It was such an incredibly enriching experience meeting and spending time with Steve.

Back to the weekend story. Friday night, discussing the weekend, Cathie suggested Steve and I spend some time in the morning. After that, the family would take him to lunch and see some sights in San Diego. Steve was stationed here 20 years ago. The city has changed so much since then and he's been living in Pensacola, FL for many years.
I picked him up at the Double Tree at 9am Saturday morning and we drove to Torrey Pines beach and parked the car. We hiked to the Del Mar power station along the Coaster tracks trail. I was a great morning. We got to know each other better, sharing stories about working for the Navy, families, travel. I kidded with him about Friday night, how Cathie was able to pull off such a surprise without raising my suspicions. I jokingly said I'd never be able to trust her again. Har dee har. After all, I was talking to her accomplice. After the hike I took him back to the Double Tree and waited outside while he got some things. It took a while. It was around 12noon. I received a call from Cathie asking if I could stop by Costco to get a bag of dry dog food. No problem. I ran the errand by Steve when he got back to the car and he was cool with it. It'd be kinda fun he said, cuz they don't have Costcos in Pensacola. They have Sam's clubs in FL. Hey, I've always wanted to see a Sam's club, I thought! I get it. Mmm. What a guy, this Steve. So nice, so agreeable. So, it was off to Costco. While I was there I thought, buy a pizza too! I phoned in the idea to Cathie. "Sure!", She said. "Great idea". What a gal, this Cathie. So nice, so agreeable. Gad, I was living a charmed morning. I Spoke to my dad on the cell phone around 11am to tell him about Steve's surprise visit. He was overjoyed, said he would tell Mom. After Costco, Steve and I drove back home. Parked outside my house was my Dad's car. How nice, I thought. So nice, so agreeable. Dad decided he wanted to meet Steve so he drove over from La Jolla. His car was flanked by a couple other cars I did not recognize. We usually dont get many people parking on the street outside our house. Must be people visiting neighbors I thought. I could not park in the garage, cuz, drat that Dylan. He parked his car up against the garage door on the side I usually drive in. Mmm. I'll have to talk to that young man, I thought. I parked on the driveway behind Dylans car. I took the pizza box out of the car, Steve grabbed the huge bag of dog food and we walked to the front door. Unlocked. Cool. As the door opened I first saw a table with food off to the left. How about that Cat, fixing a nice lunch here, I started to think as the door opened. "Surprise!", everyone shouted as I stood there gaping at the scene. Drat! Duped again! I quickly thought, before I was overcome with emotion at seeing the faces of most of the people who made it possible for me to be standing there. Another mental bookmark. These are exactly the kind of moments I want to remember the rest of my life. This is how I felt; like Dorothy, at the end of 'The Wizard of Oz'. In the scene, she's in bed, finally awake after getting hit in the head by flying debris tossed by a tornado days before. Awake from a fantastic dream she finds herself surrounded by the people she loves, people who aided her to get home in her dream. They are all looking at her asking her how she feels, "we were all so worried", they said. Back at my door, I stood aside and let Steve come in, the (kind of) Wizard of my Oz. Everyone was eager to meet him. In a span of 4 hours, Cathie, Maddie, Dylan, Anne, Jennifer, Pat & Dave, had put together a fantastic party. There were several tables of great food, newly planted flowers inside and out, balloons, drinks. I had the opportunity to thank many of you in person who were critical in helping me maintain a positive outlook in the first few months of my recovery last year. Thank you all again and again.

It was a magical weekend that I will remember forever. I guess there isnt much more to say on that.

But not so fast. Hee hee. Please allow me to indulge just a bit on the Wizard of Oz.

Isn't this the story of the endurance and triumph of the human spirit? This is the story of a severely head-injured girl who has lapsed into unconsciousness and possibly a coma. To get 'home' to her family and friends she realizes that she will have to muster all her courage, intelligence, and heart. She has much doubt about her ability to do it. In her dream state, she hears the voices of her family around her bed providing encouragement. If she stays where she is, the wicked witch of the east (her illness), means to consume her. She strikes off to find her way home. When she finally gets close to what seems to be the way out (emerald city), she finds that she must reach inside even deeper to free herself of the illness if she is continue on. Only with the help of the voices of her family and friends, she is able to conquer her fears and vanquish the darkness trying to take her. Her magical journey home is finally threatened when the voices around her seem to be giving up hope. The wizard, who was going to take her home in a balloon (a friend who was at her bedside) flies off without her. Realizing that the way home was not going to be provided by anyone other than herself, she reaches even deeper inside and wills herself to wake up. She passed 3 increasing levels of personal challenge. At any level she could have assumed defeat, given up, and been consumed.

And finally...
For possibly the last recovery report in a while, I have some news. My 1 year visit with Dr. Andrey at Scripps Green hospital (but at the Rancho Bernardo clinic), was Jan 15. Cathie came to this appointment. During the appointment Dr. Andrey congratulated Cathie and I on my rapid and remarkable recovery. He took me off my last prescription medicine, informed me that my iron levels were coming down very nicely due to the ongoing phlebotomies, and set the next appointment for 3 months hence. After that good news, his assistant stuck an auger in my lower back to collect a bone marrow sample. Cathie held my hand. In a few weeks I expect to get a report showing that my marrow stem cells are 100% donor!

Since this blog was created as a means to communicate with friends and family regarding my stem cell transplant I'll definitely be running out of newsworthy events. Thanx for staying with me during the last 15 months of this blog. You know how important your support has been to me and my family. I will continue to post updates when there is news. I have a few more monthly phlebotomies and will start my re-vaccinations in 3 months.

I'll post a slide show this week with pictures from last weekend. The slide show will only have pictures of people who have given me permission to include them. If anyone wants a CD burned of the 89 pictures just let me know.
Love you All!
Jim

Smart Kids

The picture below is of Cathie's great nephews, Samuel and Parker. They were over in July for a Roedl family reunion. In the picture, they were watching TV on our couch. Sooo cute. Cathie's nephew Cory, added the captions. You might have to click on the picture to see a larger version in order to read the captions.

Day +365 A Year in the Life

It's been exactly one year today.

One day last month I was at Costco standing in a checkout line. I have been in Costco checkout lines many times over the years. They are not moments that normally produce mental bookmarks. December was a busy month. Every checkout station was open. Lines of shoppers snaked around the last parallel product isle into the 2 long pedestrian isles that run the length of the store. It was busy. It was noisy. There were lots of people. Carts were full of gifts. As I looked out across the heads of shoppers I decided to stop thinking about the things I normally think about. I stopped reviewing, for the umpteenth time, what was in my cart and whether I was forgetting something. I vanquished thoughts of what I had to do later in the day; putting up Christmas lights, checking email, checking on my Mom's welfare. I stopped it all, except for the thought of moving forward in the line when it moved. I decided to focus on the people. What was there? What could I learn from them? What were they thinking? I should say that I've done this kind of thing before. In previous years I vaguely remember similar experiments lasting only a few moments. I never knew why I did it, maybe from boredom, maybe from some desire to learn. But on the prior occasions I quickly resumed thinking about the usual things.
This year has been different.
As I focused on the people waiting in line and I shut out my own usual thoughts, I became aware of a very different scene than what I previously described. First, I was aware of a mental bookmark being made, almost like the slow shuttering of a camera lens in low light conditions. The visual image I had of the shoppers changed. I sensed and then saw an energy around each person. Stop. Obviously I'm getting into a weird part here, but I'm going to forge ahead cuz it's my birthday. Each person waiting in line began to reflect light as they stood there checking the contents of their carts, fidgeting in their purses or speaking to their kids. The reflected light from each person was not constant and was not the same intensity. Suddenly I realized this scene was similar to another scene in my memory. Sitting on a cliff over a beach at night; slight breeze, clear skies, full moon out over the ocean. As the breeze slowly glided over the surface it pushed the water into little waves that broke up the reflection of the moon. On a quiet and still night I knew I would see a whole reflection of the moon on the water. But on that night, the wind broke the reflection up into thousands of reflective pieces. Each wave, with it's own energy from the wind, reflected a different aspect of the one moon; into my perspective. Yet the moon itself was reflecting light from a higher source, the sun; which was located 91 million miles to my back. It was a dazzling display, that day at night; at Costco, on the beach. All the shoppers were luminous beings emanating energy in the form of glowing and reflecting lights; yet with no visible source of illumination. No moon. No sun. It was just us people. I really don't think the illumination was coming from the overhead halogen lights, even though one of them was kind of flickering. The light reflections were not of a halogen origin. They were of halo origin. By that I mean I realized that each person has an inner light, their own halo. I've only recently learned to get a glimpse of them once in a while. In fact, when I can see this phenomenon, I feel an immense affinity with each person. I want to communicate with everyone. I feel that if I could get in a conversation with someone, unbeknownst to them, they would be giving me a gift of themselves, a piece of their light. This might appear selfish of me if it is not assumed that such gifts must travel in both directions. That is my hope. I feel I have the same gift to offer. It just may not be readily apparent. And this is the point to my story, but not the cause. The point is, that, I've found more and more over the past 20 years, what people have to offer me, and what I have to offer them; may not readily apparent. I do not always see the value until I take the time and effort to know them. When I take the time and effort, there is always a great reward. I think people are all diamonds on the inside. But that fact is often hidden from view by what looks like a rough surface. The rough surface (in this very lame analogy) is only a perception created by my own self preoccupation, preconceptions, biases, and proclivities. So that's the point of my story. This year, I've really been learning how wonderful people are and how important they are in my life, and to the story of my life.

Now I can talk about the cause to my story. The cause has a name and her name is Cathie.

A year ago on this date as my body was being slowly poisoned by liquids running into my veins from plastic bags hanging on a metal tree with pig tail branches, I felt the cord of life loosening it's grip. There was no pain. There was just this increasing feeling of impending doom. Technically, all cell division in my body had been stopped by the chemicals. The biological party was over. The gas tank was running dry. The generators were coughing on fumes and the lights were beginning to dim. It was a nightmarish feeling. And it may have resulted in a nightmarish end if not for the fact I had a guardian angel with me in the flesh. Cathie. Those of you who know Cathie will understand what I'm writing about. As she has done so many times since I met her almost 23 years ago, she poured on the love, affection, and hope. I could easily have let that silver cord slip away if not for Cathie's encouragement and insatiable cheer. For the last year, she has been my care giver, my light, my angel. She has been the source of my awakening. She is the cause for my story today. To this day she has not flinched from her optimism. I have a lot yet to learn from her so I am determined to stick around.

Since this is my birthday I will share another quick story. This is the story of an artist.
Again, this one was inspired by Cathie.

One Artists Story.
I was born into life with an immense empty canvas. I was provided with paints, brushes and an easel. At the end of my life my goal is to have my canvas filled with the paintings of other people; family, friends, strangers. I am not concerned with how 'good' they paint. There are no qualifications for someone to paint on my canvas. They can paint whatever they want; fun, serious, angry, happy. I only ask that people paint what they feel. People can paint over other peoples paintings on my canvas. However, I may protect certain painted areas on my canvas from re-painting because I like what is on that spot. There will always be new places to paint on my canvas. People are welcome to come back to finish a painting started on an earlier date. People are welcome to continue painting a design started by someone else. I will never paint over what someone else has painted on my canvas because the paints and brushes I was provided were not meant for my canvas. At the end of my life I will show my canvas to everyone I know and say, "Look, this is the story of my life".

--

Thank You Cathie. Next week I get my 1 year bone marrow biopsy. This will be my 6th one. I'll need you to hold my hand again.

Day +277 No Highs or Lows, ALTBUN CLAST KALB, Gulp

Referring to one of my two blood test on Sept 24, there are no highs and no lows!
For the first time in almost 3 years, all CMP numbers are in the normal range! The test is called a 'comprehensive metabolic panel' or CMP. It reveals whether some organs are under stress, functioning properly. Typical components of the test are abbreviated BUN, ALT, AST and the like.
Dr. Andrey was so happy with the results he reduced my prescribed meds down to 2 from 4. That is now only 1 gulp per night for me. I'm now down to the lowest dose of Tacrolimus possible. This is further confirmation that my immune system has been trained enough to allow a resumption of normal activities outside the home.
This appointment was different than others for more reasons. First of all the Rancho Bernardo Scripps Clinic moved to a brand spanking new building across the street. The prior location of the oncology unit was in the basement of the old building. It was dark, small, and kind of cluttered. The new onco unit is on the 2nd floor of the 5 story building across from Costco. The unit is graced with large windows on 2 sides. It is bright, cheerful, and large. Parking, which was always a problem across the street, is now a breeze due to the 4 story parking structure. Before Dr. Andrey entered my examination room Thursday, I was reading my blood report and getting choked up. A quick scan of the report column between the component values and the normal ranges came up... blank! This is the column that, over the last 3 years, has frequently displayed 1 of 2 single letters, an H or an L. Some of my letters were normally H, for 'high'. Over the last few months, as my kidney and liver functions have been recovering, the level of enzymes indicative of organ stress, have steadily dropped. Now they are normal. As a consequence of my good numbers, Dr. Andrey, for the first time, did not do the usual poking around in my mouth and belly looking for various inflammations. It's been a long road. I feel a debt of gratitude to everyone who has enabled my arrival at this milestone.
Of course, the great doctors, nurses were instrumental for their medical skills. Deserving credit are all the patients who have walked this road previously and provided the data needed to fine tune the transplant process. Many did not make it to my point, but their experiences have been analyzed and all the lessons learned from past failures have been put to good use in giving others a better chance. The stem cell transplant treatment is still considered a clinical trial. On the papers I signed last year, my 'lead investigator' was Dr. Andrey. In January, I voluntarily participated in a clinical trial for a post-transplant drug. That drug, Maribavir, may become part of the normal protocol for post-transplant treatments. It worked well for me although I still dont know if I got the placebo.
I applied and was selected to participate in a study being conducted by the Mt. Sinai School of Medicine, 'Sharing our Strength, Life's Journey After Transplant'. This is a study that, I think, will attempt to quantitatively link transplant success with psychological factors. The study will also test treatment methods devised to increase transplant success rates. After the first couple phone interviews, my role in the study will be in the form of 4 writing exercises over a 1 month period. I'm not exactly an impartial study participant. I feel that my recovery success, to date, has largely been a result of the support from my family, including all of you, my blog family and friends. A particularly sensitive time for me was the first 4 weeks of the process. Your support was overwhelming and made *the* difference. My chemo brain was playing strange tricks and it was all of you who pulled me back from the abyss.

Day +245 A Question of Passion

A father once said, "Son, you have tried for many years to become a successful actor but had no luck. You continue to live hand to mouth and your health suffers. Maybe it's time you look for other types of employment." The son replied, "Dad I love acting. I'll never give it up."

A wife once said, "Husband, you have been in several bicycle accidents and had many broken bones. Maybe you should give up this hobby for your own good." The husband replied, "Dear wife, I love riding my bicycle. I can never give it up".

A friend once said, "My best friend, you have had a serious accident on your motorcycle in which you lost control; but you survived with only cuts and bruises. Maybe motorcycle riding is not a good match for your personality." The man replied, "Dear friend, I love riding my bike. I will never give it up."

A stranger once said to another, "Stranger, I saw you hyperventilating just now to the extent that you passed out. Maybe you should give up breathing." The other replied, "Kind stranger, thank you for your concern. But I love breathing. I will never give it up."

for Trevor White - 1987-2008 - A Man of Great Passion

Day +240 A Friend Lost

I am physically well today, not so much mentally. Today, a very special young friend has been lost to a motorcycle accident a couple miles from my home. Trevor White passed away at the scene of the accident. We think he was on his way to work. Trevor was very young and leaves many hearts broken and missing him already. All of us Andersons have known Trevor for the last 13 years as his mother and Cathie became good friends through their connection at a preschool where Trevor's brother Cody and my son Dylan were classmates. We are all very sad for Trevor's mother Anne, father Steve, and brothers Cody and Weston. It is such a shock for the heart to realize that this wonderful and vibrant young man will no longer be with us. God bless his young soul and help comfort his family. He was loved by many.
News story.

Day +233 Eight Months All is Well

Yesterday's appointment with Dr. Andrey happily produced no surprises. He has given me the go-ahead to mingle with people in normal environments. Doctors are pretty conservative with their assessments, so his directions are significant. Now I can feel safe going to a movie, working in an office, eating at a restaurant!
It's kinda weird doing this well for so long. I've actually felt pretty well both physically and mentally for several months. It's been the danger of opportunistic infections, as gauged by the doctor, that has kept me home. He says my immune system is like a baby's immune system, except that babies start out with a jump start from their mother's immune system. It takes plenty of time and training for a new immune system to be ready for serious battle with everyday pathogens.
My iron levels are slowly going down due to the phlebotomies. My dry eye and mouth problems seem to be going away. My WBC is 3.9, Hgb is 14.1, Plat is 232. My metabolic panel shows that the elevated liver enzyme counts associated with liver stress are going down. The counts have been slightly above normal, probably because of the iron overload.
Thanx to Steve my new stem cells are operating like all of yours, cranking out red, white and blue cells as needed. (I'm calling platelet cells 'blue' cuz it's an election year). Thanx everyone!