This word I like... We architect our life...
A song, a sigh... developing words that linger...
Through fields of green, through open eyes... It's for us to see.
Interanimate: To animate or inspire mutually

Sunday, June 29, 2008

Day +172 Hiking to Cara, Bachin It

I had a good week except for one major problem. My family was gone. They boarded the germ factory called a Boeing 737 and flew off on their annual vacation to Cathie's home town, Lake Mills, WI. They return tonight.
Dad and I hung out and were able to find a new trail to hike every day of the week. We found some great ones. At this point we are trying to walk different segments of some of the same trails we discovered previously. Maybe I'll write a book, "The Hikes of Ranchos Penasquitos". It really is amazing how many trail hikes exist in this area. San Diego's 'Trans County Trail' provides some great jaunts. One of our best discoveries last week was the TCT trail portion between Black Mountain Road and I15. This turns out to be a very nicely shaded trail in the canyon with a running stream. We ran across some kids fishing in the stream. If you park at Canyonside, the round trip hike to I15 is approximately 1.5 hours. If you park at Ridgewood Park you can cut the trip in half. When you round a certain turn in the canyon, the 100 yard wide, massive I15 bridge between Mercy and RPQ Blvd suddenly appears in the west sky overhead like something out of a science fiction movie. Next to the I15 bridge is the old I395 bridge, rising out of the canyon to only half the height of it's replacement. As you walk under the 100ft high bridge, the sounds of traffic drown out the sounds of the Phoebees and finches chattering in the steam-side trees. You can't see the traffic, even from a distance. However we saw a lone yellow grading tractor sitting on the west edge of the southbound lanes. It was parked directly over one of the 100ft high columns. Caltrans is in the process of widening the freeway at this point and down to the south. On the East side of I15 you are still in the canyon. There is a single lane, mostly unused, road leading North-South to a waste water treatment plant that is visible in the canyon below to the Northbound I15 travelers. The road, Cara Way, is special. Dad and I first became award of this due to the fact that the road had numerous retaining walls on either side that were decorated in reliefs by a local artist. The designs were a celebration of the Kumeya’ay Indians. I could tell that great expense went into designing these retaining walls on a road that I thought just led to a treatment plant. We walked a hundred yards down the oak and willow tree lined road toward the treatment plant. Just outside the locked gates of the plant we discovered the reason for the fancy retaining walls. This was the location of the Cara Knott memorial park. Cara was 20 years old when she was killed by a California Highway Patrol officer in 1986. The park is a volunteer-maintained clearing with planted baby oak trees. Many trees are ringed with memorial rocks and artifacts for other young people who passed-on too early in life. Someone constructed a beautiful wooden gazebo in the South end of the 1 acre park. Walking around and reading the various inscribed memorial objects was a time to reflect upon how tragedy can strike so unexpectedly.

Day +172 Eternal Vigilance One Can Only Hope For?

Last Sunday my Dad and I attended a seminar/celebration at Scripps. It was the 21st Annual National Cancer Survivors Day. The event was held in a nice sized amphitheater at Scripps Green hospital. It was attended by over 300 people, including 3 speakers, a musical entertainer and the San Diego Union newspaper. This wasn't so much of a 'support' gathering as it was a celebration for cancer survivors. 2 of the 3 speakers were cancer survivors, the other was my doctor, Jeffrey Andrey. I want to write about Dr. Andreys presentation and mention that the musical entertainment was really good. The lone performer was Steve White. He played blues guitar, harmonica, vocals and foot drums. Everyone was stomping their feet to the music. He was very good.
Dr. Andrey's presentation was very interesting to me in terms of understanding cancer. His topic was the increasing use of SCT (stem cell transplantation) for the treatment of tumorous cancers. I've always thought of SCT for the treatment of bone marrow cancers, which are non-tumorous. A traditional SCT is meant to replace defective marrow stem cells with a donor's good marrow stem cells. With the new tumorous SCT therapy, there is presumably nothing wrong with the patients marrow stem cells. Instead, tumors elsewhere in the body are the target. How could this be?
The answer may be surprising. Replacing bad stem cells with good ones make sense, but this cannot be done without the necessary side effect of a cold 'reboot' of the entire immune system. For people with bad stem cells, they would love to not have a cold reboot. The results of an immune system reboot is unpredictable. What will the new immune system attack? The liver? The heart? The lungs? Nothing? Most people, like me, are extremely happy if the new immune system attack nothing except for invading pathogens, bugs, and other usual suspects. For SCTs done to tumorous cancer patients whose stem cells were fine to start with, they *want* their new immune system to function better than their old immune system. In other words, they want an immune system transplant. Why?
This is the intriguing part. A cancer patient's old immune system somehow became lazy. Their immune system allowed itself to be duped by line of cells that were 'not right'. In other words, the tumorous cancer cells established themselves in their body and their immune system allowed it to happen. This is how cancer gets established. Errant cells, randomly created by faulty cell divisions, are supposed to be detected and killed by the immune system. Cancer is an immune system failure. With traditional SCT's like mine, some Graft Vs. Host (GVH) reaction is expected. It is expected that the new immune system may target good organs by mistake. But the immune system may target cancer tumors just as well! They call this side effect Graft vs. Tumor (GVT). It is hoped that the new immune system will not find fault with healthy, desired, organs; but it *will* find fault with any tumor cells it finds. Dr. Andrey produced slides during his presentation that demonstrated lung tumors clearing out in one SCT survivor. This is an important frontier in cancer research. But how can we direct a (new) immune system to attack only things we want it to attack?
Eternal vigilance. One thing I've come to realize from all this is that our immune systems are the key to a healthy, cancer free, disease free life. What is it that causes an immune system to give a free pass to a new line of mal-organized cells? What happens early on when there are only a few malignant cells? Why does the immune system let down it's guard? How does it get duped? The immune system must remain eternally vigilant. Is this something we can only hope for or are there things we can do to help?

God bless!

Thursday, June 19, 2008

Day +162 News From My Other Half

Today was not going to be a post day even though I had 2 appointments at the hospital. But now that I'm back I have something. One appointment was for a blood draw, a residual from the Maribavir clinical trial study I was on until April. Not much excitement there. The other was my 3 week gassing with Pentamadine. This is where I suck an antibiotic gas under a hood for 10 minutes while I read a 6 month old issue of People Magazine. Not much excitement there.
The real treat was getting a letter from my donor. Mr. 'D' sent me, through the numerous editing channels of course, a nice letter on regular paper. This was exciting to me. I'm going to reproduce it below cuz it's not really personal and I want you to see how Mr. D's life has been affected as a donor. I'm sure he won't mind me posting this.

But before typing in the letter I want to say that I am doing great. My Dad and I have been finding many hidden trails within 5 miles of my house for our hiking excursions. The area is literally riddled with canyons sporting old trails and roads. The wild thistle artichokes are blooming a bright purple. The plant looks like an regular artichoke on steroids. Rabbits scurry everywhere as we approach and birds drunkenly fly about after munching on the ripe red monkey berries. It's getting hot so we plan our trips for 6:30pm when the ocean breeze starts pushing the sea mist back up the gentle marine terraced slopes.
My next doctors appt is July 3. He will be advising me on whether he thinks I can resume mingling with other people in offices and other gathering places. Believe me, I'm missed many gatherings that I wished I hadn't. The fact is, we are a pretty healthy society what with all the vaccinations we received as kids. So now I, who have lost all my immunities, get to take advantage of all of your good health, which is attributable to your childhood-engineered vaccines. I can catch colds and the flu, but all the really nasty stuff is pretty rare these days due to the childhood vaccination program. I'll start re-taking the vaccinations in around 6 months.

Without further adieu, meet my donor, Mr. 'D':

Dear Recipient,

Have received your letters and I am so glad that the donation was a success. It has been a unique and rewarding experience for me. I never thought that I would get called to donate. When I was contacted in 2006 I had forgotten that I had signed up. Through talking with my coordinator I found that I had enrolled in the program in 1992 - many years and quite a few moves ago. How they tracked me down I am not sure. The coordinator told me that that was the longest span between sign up and donation that they had seen. It was obviously meant to be.

Many of my coworkers have given me so much support when they heard I was in line to donate. They had many questions. Since I have returned from the donation I know of one person that has signed up to be a donor. My employer is a big advocate for the program and is going to have a sign up drive in a few months. I have been asked to speak of my experiences during the whole procedure. They were surprised to see me back to work at full steam the day after the donation. A lot of people thought of the old procedure where the marrow had to come from the hip. (I would have done that if needed.)

As far as all of the medical terminology, I am not very well versed. Science was not my strong point in school.

I am happy to hear that you are progressing and I also look forward to the day we can exchange information. I have a 'motto' that I live by - We are all in this together. Life is hard enough and we have the choice to help each other or not.

I am not very good at the letter writing (my Mom gets onto me about it) but I will try to get better. I am using a friend's computer to write this so that it is legible. As you can tell from the card I sent that I do not have the best handwriting in the world.

Look forward to hearing from you.

Your Donor

I typed that word-for-word from Mr. D's letter, which I received from the transplant nurse today. It makes me feel great to know that Mr D's donor experience is enriching his life. I did not want to feel like his experience has not been good. Anyway, it is my intention to remind Mr. D from time to time what great things his generosity has done for my family. We will never forget his effort and hope to establish non-censored contact with him when the NBDP allows.

Thursday, June 5, 2008

Day +148 Two Out of Three Aint Bad

Today was my first doctors appt since May 15.
I've been feeling pretty good the past 3 weeks. My energy continues to return. I find myself walking farther and taking on more daily projects, mindful of minimizing unnecessary contacts with crowds and airborne particles.
My father has returned to our house to stay with us for a while. He and I have returned to being walking buddies. Around 6 weeks ago, after my good 100 day checkup I released him from his co-caregiver duties and he returned home to my mom. However, even after 57 years of marriage couples can need temporary breaks. So he is a welcomed returning house guest and is keeping me honest with my daily exercise routine. He is also a great companion, enjoying a conversation about anything and is very supportive and patient.
I cant mention great companions without talking about Cathie again. She is off the scale in the companion and caregiver categories. She is actually more mindful of my health dangers than I am. Around 3 weeks ago I started developing a couple small issues and she was the first to notice one of them. I've developed a slight rash on my face, no where else. The rash is only noticeable up close and is similar to a mild case of teenage acne. The other minor issue is that my eyes seem to be drier than usual. I've experienced some dry eye issues over the past few years but this time around it is more irritating. I have to rub my eyes a lot and/or apply some 'tears' solution. Cathie convinced me to consult with the doctor about these things. It was hard for me to do this because I know that Graft Vs. Host symptoms can be much, much more pronounced, and I've never read about dry eyes and face rashes being symptoms. Well, the good doctor is not alarmed but wants to keep an eye (no pun) on the 2 things because they are sometimes an early sign of GVHD. He was going to reduce my immune-suppressant drug Tacrolimus to 1Mg from 2Mg per day, but decided against it until we see if anything develops. So maybe my 'perfect' recovery from the transplant is in doubt. Oh well. If this is the only symptom of GVHD I ever get then I'll still be extremely lucky. I've made it this far because many of you willed, wished, and prayed for it. I have to thank you all again!
My counts remain on a positive upwards trend. Now my platelets have reached a normal count. My white cells will not fully recover until I am off the Tacrolimus and Diflucan. But they remain close to normal and are not falling. My red cells remain in the normal range. Two out of three aint bad! My new stem cells continue to graft well and repopulate.
My mental outlook improves all the time. It's hard to believe that only 6 months ago I was looking down the barrel of a biological gun. Now I feel the gun has been lowered but is still lurking. I have a great hope for being around for at least a couple dozen more years! This is my fathers day present from all of you!
My next doctors visit is July 3.