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, December 30, 2007

Hardware installed, ready to rock!

What a week.
I got the Groshong catheter installed Wed noon. Stayed in the bmt ward overnite, got adavan at 5am then the test chemo dose at 6am. The adavan knocked me out so i was totally unaware of anyone hooking me up to the 2 hr busulfex dose from 6-8am. On friday i got a 2 pint transfusion of rbcs, prolly my last from the clinic near my home. They used the new catheter in my chest. The area is still a little sore. From here on out, any more rbc transfusions will be done by the bmt nurses at the hospital.

I think I found out that I will be switching blood types in the next few weeks. I'll be going from A-pos to B-pos. The donor is B-pos and male.

I have plenty of DVDs to watch and we also get netflix. My fam got me a mobile dvd player! The rooms have a small TVs in the upper corner equipped with a VHS player. But who has VHS tapes anymore?? Half the rooms have ocean views and half have parking lot views. So i will either be watching hang gliders over the torrey pines golf course or people walking to and from their cars. mmmm, which side do i want??? Actually I dont really have a preference.

I'd like to blog every day. But after my short experience with adavan, the anti-seizure/nausea medicine, I may be too ditzy and wiped out to think clearly during the 4-6 days of chemo. Maybe i'll be able to type out a few words. I'll show Cathie how to post.

Duane, a kind blogger at Journal Of A Prize Fighter who is 4 months post-transplant, has provided me with numerous valuable tips for my 4 week hospital stay that starts Tues nite. Thanx Duane!

Sunday, December 23, 2007

Yes, It Can Happen - Explained

I want to explain myself on one of my blog themes, "It Can Happen".

I have incorporated some lyrics from the song by Yes, "It Can Happen", into the header of my blog. In addition, I've placed a link for the song in the sidebar.

The purpose of this theme is probably far from what you may think, that is if you have given any thought to the theme at all. The songs lyrics repeat several times, "It can happen to you, it can happen to me, it can happen to everyone eventually". What is "it"? This is one of the reasons I like the song so much. It is short, but it asks a question that does not seem to be answered. What is "it"? If you want to take a shot at the answer feel free to read the lyrics at this point here. There are a few errors in the lyrics as presented on the linked website, but they dont affect the question and the answer. Hint: The answer is in the song but you wont find it in the published lyrics.

What it is not. I did not incorporate this theme to say that "getting my disease, or any disease, can happen to anyone." In fact, regarding my disease, Myelodysplastic Syndrome, I would bet that NONE of you will get it. It is rare. Much more rare that any disease you have probably ever heard about. The incidence is less than 12,000 people per year in the US. MOST of these cases are people over 60 years old. So, in the San Diego area with a population of around 3 million, there might be 120 people diagnosed per year and maybe 30 of these are under 60 years old. Very rare. This is not a disease you have to worry about.

Then what is it? At the very end, as the song is fading, the chorus is repeating. As the people who took the time to write down the lyrics have put down their pens and the volume has dwindled to maybe a quarter of the full volume, lead singer Jon Anderson provides the answer, "You can love yourself". Hear it for yourself. The answer is provided only at this one place in the song.

As rock music philosophy goes this song contains a rare gem. This is my take on the message: Loving oneself is a process and one should let it happen, not fight it. We can architect our lives around it. If we open our eyes we can see beauty of it. If we let it happen, it *will* happen.

I think it's a good message. I'd be willing to bet that a lot of good things can and will happen in ones life if it is allowed to happen.

That's why I have a fond place in my heart for the song and why I've included it as a theme in my transplant blog.

Wednesday, December 19, 2007

Trusty Old Dell

Hello to my wonderful 11 readers!

I've been resurrecting my trusty old Dell Latitude CPx laptop, circa Jan 2000. I used it extensively a few years back when I traveled every week to Penn on an IBM contract. But it's been gathering dust for 3 years now. Apparently during my 4-6 week incarceration coming up in 2 weeks, wireless access will be provided by the establishment. So I bought a wireless G pcmcia card (remember those) ($20) and a compact flash pcmcia card ($10). Amazingly, the laptop battery still works. Since I'll have 110 volts in my room I wont need a battery anyway. So... this means I'll be able to A) post to this blog, and, even better B) load pictures I take with my Olympus EV300 directly to the laptop. This way I can show you pictures of my cue-ball head as well as other things of great community interest.
Here is my latest schedule. This Friday I spend a few hours at the hospital for various tests and consultations. I think they want to make doubly sure I know what the heck I'm getting in to. Dec 26 I will get my vascular system hard-wired to a port in my chest (enuff said). I will stay at the hosp that night. At 6am Dec 27 I will get a test dose of Busulfex for 2 hours. From 8am to noon there will be several blood tests where the doctors will find out how my body metabolizes Busulfex. This will allow them to determine the 'correct' dosage for the following week. I'll go home after noon on the 27th. Jan 2nd I will be hospitalized. First I will begin 4 days of non-recreational use of the wonderful drug Busulfex. Around Jan 9th the docs will administer the antidote to all the Busulfex: stem cells from the kind donor. If everything goes as planned, the new stem cells will begin crankin out new red,white and platelet cells by Jan 22. When the doctors determine that the engraftment is succeeding, blood counts are on the rise, I will be released back to my home to start several months of recuperation. My immune system will be brand new and will have to start learning about the world of germs all over again. Basically this will get me out of housework for a while. There will be a lot of hand washing and wearing of surgical masks. After a while my hair will grow back, maybe even without the gray!
I am totally optimistic. And I appreciate all your prayers, wishes, and good will.
Merry Christmas and/or Happy Holidays to you!

Wednesday, December 5, 2007

Yipee! (Gulp)

At this morning's appointment, my doctor and nurse had some good news. Cathie attended this appointment. As usual she was a great help in asking the right questions and being supportive.

My transplant procedures will start January 1. Yipee!

Here are some details. (Rated PG13)
A transplant date has been set for January 9. That is day zero when donor stem cells will be transfused into my central line catheter. The catheter will be surgically implanted in my chest during Christmas week. My 4-5 weeks of hospitalization will begin the night of January 1. That is when I start several days of chemotherapy with a drug called Busulfex. This wonder drug causes "profound myelosuppression", it kills bone marrow cells including stem cells. Out with the old, in with the new! (Gulp). Good news did I say? I realize how awful my good news sounds. But its all relative. Hey, compared with the bad news that would eventual follow if I just let my condition run it's natural course... Caveat: The transplant date is contingent upon the donor passing his final tests next week. The other donor has been placed on 'hold' just in case the selected donor does not test out.

Special Thanx
Many thanx and blessings to Cathie for being there for me today! And here's more great news. Cathie has volunteered to be my caregiver during my hospital stay and recovery! Being a caregiver for me over the next few months is going to take a huge effort on her part. My father and Maddie and Dylan will assist her in any way they can. I really dont know what I would do without Cathie's help.

Yippee! (Gulp)

Saturday, December 1, 2007

Probably be home for Christmas

It now looks like my efforts to get rewired will be delayed until January.

Cindy says she was contacted by the NMDP Thursday. They told her that the donor has an appointment for testing Dec 13, no other details were provided to her. This news comes after Cindy told me a couple weeks ago that the donor had gone in for testing a week earlier. Cindy speculates that the donor may have had an active cold or flu virus in November. I have all kinds of questions but there are few answers. Cindy scheduled a check-up visit with her and my doctor this coming Wed. So, I'll try to get a better feel for the whole donor scheduling process then. I suspect that this is just the way the NMDP works. We have to assume they are acting for the good of both the patient and the donor.

I'm thinking that if the donor gets tested Dec 13 then the test results won't be ready until a week later. The NMDP will notify the donor close to Dec 19 that he is ready to donate. The donation process requires the donor to visit their local hospital for a quick shot 4 days in a row. On the 5th day the donor visits the hospital one last time for a few hours as his blood, now teeming with his myeloid stem cells is filtered through a machine which harvests the cells. I don't know how large of an imposition this entire process may be on the donors holiday plans. Example: how far must the donor drive to get to a certified donation hospital?
So I'm guessing the donor will not want to schedule the procedure until after the new year. But I'll go whenever I'm called. Approximately the same day the donor gets his first shot I will start my chemo preparation and be hospitalized.

The donor delay is a mixed blessing. There has been and continues to be risk associated with delaying a stem cell transplant. However, during yesterday's transfusion as I sat in the chemo recliner and pondered things, I once again had to look no farther than the chairs next to me to know that I should not complain about -anything. On my right, a very nice middle aged lady with incurable bone cancer, on my left a wonderful older gentleman with leukemia. In the other chair was a middle aged man that I think was getting a dialysis flush. He may have renal cancer. I know the names of some of the people I meet in those recliners. I've seen some several times. There are those I used to see often but have disappeared. I don't want to ask the nurses about their whereabouts.

I am very happy to be able to share this Christmas with my family at home. It had been shaping up that I was going to be in the hospital over Christmas and New Years. This is the second Christmas that I have had to contemplate possibly being my last. It is a very strange thought.

There are at least 2 posts that I want to write this month. One post will be to thank all of you who read this. I realize that the subject matter of this blog is difficult. The other post will be a light hearted, easy to read attempt to explain what MDS does inside the body, and how a new set of myeloid stem cells from a very closely matched donor angel can quickly 'fix' the problem.

Tuesday, November 27, 2007

Sicker than a pooch, maybe donor is too?

Greetings to my 3 readers.
I just heard from my transplant nurse, Cindy. She has not heard from the National Marrow Donor Program regarding the recent donor tests. They did inform Cindy 3 weeks ago about the donor coming in for the tests, however they have not communicated to her about the results of that test. Cindy says the NMDP is famously quiet regarding donors. It could be that the donor had an active virus when they came in. Maybe like me. I've been sicker than a pooch since Monday the 19th. No fever, no chest pain, just the nasal, sore throat, runny nose, exploding head common cold.
On the 19th, I went in for my bi-weekly, pre-transfusion blood test. However, my hemoglobin was at 10.5, around 65% of normal, high enough not to need a RBC donation. This was a relief to the transfusion nurses at the clinic. Since I was sick, they were not relishing giving me a transfusion along side a handful of people with compromised immune systems. At any rate, I rescheduled my next transfusion for this week when I should not be as sick. I finally broke down last weekend and stumbled into urgent care to get some help for the cold. Unfortunately, the biggest shopping weekend of the year is also the biggest sick-out of the year. I ended up spending 4 hours there but was rewarded in the end with a couple pieces of paper from the doctor on call. I took the cryptic doodlings to a CVS pharmacy and traded them for several neon colored pills that I was told wwould make me feel better. Well, after 3 days of taking them I do feel better.
And there goes my theory about why I havent been really sick since I've been ill. The theory went something like this: When common viruses get into my blood they look at all the weirdness, oddly shaped cells, cells from external sources (donors), etc, so they pack up and leave. Well, the cold I got on the 18th had nooooo problem with my blood. I will not underestimate viruses again.
Dutifully yet unintentionally, I shared my cold with Cathie. The kids did not get sick (maybe it came from one of them?). We had to cancel some holiday party plans due to our mutual bug infestations. But we ended up having a very nice turkey day at home with the 4 of us and Grandpa. How can Cathie find the energy, while sick, to make a full turkey dinner with pumpkin pie? Compare to my mostly inanimate position on the recliner couch surrounded by liquids, otc drugs and football on tv. On healthier turkey days I normally help... a little (she reads this). Hi sweety pie! Thank you for your unbounded energy! I will have energy again some day!
I was just kidding about the 3 readers. In fact, the 3 readers that show up on my webstats as blog visitors may be search engine spiders, RSS feed bots, or other non-humans. Since I added the ability to subscribe to my blog by Email I can see that most people have chosen that route. Thats fine but keep in mind that the Email versions may not include graphics or slide shows that I sometimes make part of my Blog posts. Maybe that is a good thing?
Back to the transplant date. Cindy says that the 3 transplant doctors will discuss my case this week in regards to the awol donor. There is another donor at the same match level. Hopefully, the NMDP will pony up some info about the selected donor soon.

Thursday, November 15, 2007

Waiting for donor test results

Spoke to my transplant nurse this afternoon. The selected donor (there is a backup donor!) went in for a physical and blood tests last week. When the NMDP clears the donor using the test results, they will give us a date.

Wednesday, November 14, 2007

Elusive but not shy

Its been a while since my last post. The only sct update is that last week, the transplant nurse said she would let me know this week about a transplant date. I dont know what is holding things up except that the donor may have scheduling conflicts.

Tuesday, Oct 30, my Dad and I took an overnight trip to Borrego desert. Dad has a new Celestron telescope and wanted to try it out under clear skies. I'll start this trip in the middle. At our campsite it was windy in the daytime and the temp was in the low 80's. We hiked maybe 1/2 mile in the afternoon cuz we are both fairly unhealthy. Dad has been developing pains in his legs and I needed to gas up, my hgb in the low 8's. The night was fairly clear and we saw many more stars that we would have been able to see in San Diego. When the moon came up that changed.
As soon as it was dark Dad setup his telescope and leveled the tripod. He turned on the scope computer and aligned it by focusing on 3 random stars, one at a time. When the scope has this information along with the correct longitude, latitude and date/time, the on-board computer knows exactly where every heavenly body is located. I typed in a star and the scope motors rotated to point west towards the horizon. Unfortunately, the huge mountain to the west (at Palm Canyon campground) was in the way so we could not see the star. I then tried Jupiter and the scope motor would not respond. The scope remained fixed towards the coast. The telescope runs on 8 AA batteries and I think they were low. Just around the time the scope tanked and we rebooted it, the only other occupant in the campground called out from nearby, "Hello the camp!". This is the traditional way you are supposed to approach a campsite in the old west in order to avoid getting shot as an unfriendly. I invited the guy over. Dad and I ended up speaking with 'John' for an hour about various subjects. Very interesting guy. 56 years old, tall, grey hair, just had an interview that afternoon to be a park worker. I think he was a cubicle refuge. He used to work an office job but realized his life there was not what he wanted. Anyway... After our talk with John, Dad put the scope away. The moon arose over the mountains a short time later. It produced some crazy optical illusions before it came up. Both of us were looking just above the tip of the mountain where the moon would later appear. There was a lone star in the sky just above the mountain. As we watched it, the star jumped around randomly in various directions, but always coming back to remain still for a few seconds. The jumping distance was significant, and we did not know the moon was just below the tip of the mountain at that time so we were quite amazed. We speculated that the star was a UFO. Within 1/2 hour, around 10pm, the moon started to appear. The moon was almost half and the flat side was pointed upwards. The first thing we saw was this bright 'line' appearing on the top of the mountain in the far distance. The star stopped jumping around. We did not know it was the moon so we thought we were witnessing another strange and new astronomical phenomenon. After another few minutes it became clear that we were mistaken. There was the moon. The star was gone, eclipsed by the moon. All the other stars were not as bright because of the moonlight. The wind had died down. All that intruded on our senses were the bright moon and the sound of dozens of coyotes yelping secret messages to each other from adjacent canyons snaking out of the valley.
We repaired to our Coleman tent and called it a night.
The next day, Dad was up at the crack of dawn and had all his stuff cleared out of his half of the tent before I awoke. We had no coffee so we had to collect our wits the old fashion way, work. As we broke camp, we noticed the moon high overhead. It was taunting us about our failed attempts to view it the night before, and how it fooled us with it's little star dance. Dad couldnt take the taunts. He broke out the telescope, leveled the tripod and trained it in the direction of the half moon. No matter how hard we tried, we moved the scope, focused the scope; all we could see was blue sky. Out foxed and probably out witted, we disassembled the scope again.
On the way home, we stopped at Dudley's bakery in Santa Ysabel and bought 4 loaves of their wonderful bread. Heading west, starting on the hill immediately to the East of Dudleys the earth was scorched. The scorching lasted until we entered Ramona. Most every house that had trees around it had been reduced to nothing except the skeletons of various appliances. Rubble. In places, the ground had the look of a fresh dusting with snow. It was ash. The huge chicken farm outside of Ramona survived, good news (I guess) for the millions of hens housed therein. The hen barns had no trees surrounding them to catch fire. The brush had been kept cleared. Most of the houses in the long canyon between Santa Ysabel and Romona were gone because they were tucked into pretty groves of California Oaks. After passing through Ramona, we decided to take Highland Valley Rd to 15. This was a reasonable route back home. I was concerned about being a looky-loo. Highland Valley was heavily impacted by the Witch Creek fire. Many houses were gone. Thousands of Avocado trees withered but still holding up blackened avocados. Crews were everywhere installing new wooden telephone poles and protective rails. Driving South a few exits along I15, drivers can see several hills in North Rancho Bernardo that are now missing houses. Chimneys remain standing over the ruins, seemingly to make an obvious statement, "Next time build the *whole* house from brick".
On our previous trip to Borrego last year, I took some pictures and made a Slide Show. Be sure to check out slide 5 of the Big Horn Sheep posing. These sheep are elusive but not shy. We were able to get within 40 yards of a dozen of them. Also check out the beautiful desert afternoon cloud formations in slides 1-3. You just dont see this on the coast.

Monday, October 29, 2007

Quail Gardens - March 2007

For those who haven't visited Quail Gardens in Encinitas I suggest you go sometime next spring. Here is a small slide show I made from a March 2007 visit with my Father and Sister. I used an Olympus E300 digital camera. If you like any of these pix you can click on the pic 3 times to finally get a real big size that can be saved for your desktop or wherever.

Topic News: I should have some news about a transplant schedule this week.
Blog News: I added a tool on the side panel where you can be notified by Email whenever there is a new post.
Thanx and Best Regards.

Thursday, October 25, 2007

On Course for Transplant

Stem Cell
Cathie and I met with my dr. and the xplant nurse yesterday afternoon. This was a consultation visit. Since undergoing several tests 9 days ago I had to wonder if any of the test results would cause a hold up. I'm happy to report that I have no counter indications against a stem cell transplant at this time. My organs are in prime shape to deal and heal. To the right is a electron microscope picture of a typical stem cell.

Viruses not so good to have if transplanting stem cells.
I tested negative for a couple viruses that are problematic for transplant recovery. Both viruses are among the 8 variants of the Herpesvirus family. My tests were negative for Herpes 1,2, & 5. Commonly known as Herpes simplex 1 & 2, this virus is estimated to be present in 58% of people. Herpes 5 is commonly called Cytomegalovirus (CMV) and is estimated to be present in 50-80% of people. These viruses are normally dormant and only a nominal nuisance for people with healthy immune systems. Most people do not even know they are carriers. For transplant patients without an immune system, these viruses can 'wake up' and cause big problems. I am *very* fortunate because none of the 41 pints of blood I've been given in the last 20 months were screened for these viruses. I think there *is* a screening for HHV-5 and have asked that my future transfusions, such as the one next week, be 'CMV negative'.

A proposed schedule has now been sent to the National Marrow Donor Program. The donor will be setting the schedule. My xplant nurse said she estimates the transplant activites to begin in 3 to 6 weeks.

We are prepared!
Please know that my family has had almost 2 years to prepare for the financial and emotional aspects of my illness and the potential transplant. We appreciate all your well wishing and emotional support. For many reasons I wont go into, we are financially prepared for my upcoming transplant and the 3-12 month recovery period... or even any alternate outcomes. I especially appreciate your offers to donate blood for my transfusions. My dr. tells me that it's actually better for me to continue to rely on donations from anonymous donors. There are many reasons that I wont bore you with. If you want to help, please become a blood and stem cell donor. You may save a life!
By the way, did you know that my blood type will change to that of the stem cell donor? My hair may grow in as a different color? Wow!

Fire followup
Apparently there is now a healthy discussion of whether homeowners should be allowed to stay with their home and help stamp out or extinguish embers before they start the house on fire. Today's San Diego Union Tribune's front page had an article about the fact that San Diego's previous fire chief chose to stay with his house and fight the fire with his garden hose. There was also a column in the local section by Logan Jenkins, "Evacuation dissenters: Heroes in disguise?". His article supported my observations on my previous post. He drove through fire areas unfettered, "It's a privilege afforded the press, the practically unlimited access to mandatory evacuation areas that no homeowner, no matter how insistent, can enter." He continues, "If my house were in danger from a wildfire, I'd want to stay and fight for my home."
Currently it is a misdemeanor for a resident to stay in a 'mandatory' evacuation area. I guess there will be a knock on my door by the authorities soon...

Tuesday, October 23, 2007

Appt Tomorrow and Fire Report

I am going to try to not post unless I have updates to my stem cell transplant. This, so you dont have to read my theories about alien DNA. You might start thinking that my illness causes mental delusions. It does not. A voice in my head is fairly positive about that. If I have any further off-topic remarks, they will only be posted after a sct update.

Appointment Tomorrow
I have an appointment tomorrow with my dr to discuss recent tests and to sign release forms.

Delusions, Aliens, and Fire Report.
We must evacuate as Southern California Burns!
According to US News & World Report, this is true, " Southern California Burns".
Grandiose headlines aside, from our perspective in North San Diego, the claim seems to be true. The last 2 days has been a real adventure for my family and many others in a 10 mile radius. Our neighborhood was variously given mandatory or voluntary evacuation orders starting Monday morning. One of the 15 or so fires in Southern California is called the "Witch Creek" fire. This is our fire. Satellite images on TV clearly show all these fires North of the US-Mexico border. Just South of the border where they have the exact same fire conditions, they remarkably dont have a problem with 'accidental fires'. Wait. Enough of my stress-induced paranoid schizophrenic pseudo-conspiracy theories insinuating mischief by yet another group of aliens. Deep breath... Oops! That hurts. Cant do that now, smoke in the air.

Yesterday morning, the authorities (via TV news personalities on every station) said there was a mandatory evacuate evacuation for our area. To prepare for the mass evacuation the authorities had wisely closed the major artery out of the area, Interstate 15. One of the only remaining North-South surface streets was the 2 lane blvd bordering our house. I walked back and looked over the fence, and, yep! gridlock. Panicked faces appeared in every windshield. We waited.
Around 5pm, the newscasters announced that our area was now under a second 'mandatory' evacuation because of wind changes. We were all packed so we left soon thereafter. Maddie had been getting sick so we multi-tasked during our evac by taking her to Scripps urgent care. Tests indicated strep throat. We picked up a prescription and returned to our house so Maddie could recuperate in her bed watching Family Guy on TV. I'm writing this from the supposed 'hot zone' miles from any fire. Our neighborhood is still under a 'mandatory' evacuation. The neighborhood is still deserted. Outside, the sky is blue, the temperature is in the seventies, there is only the slight smell of smoke. There is no wind. We remain unafraid!

In my opinion, what can So Cal governments do better for the next fire?

  1. Provide a firefighting official to speak directly to the public on TV. Middle-man news anchors mis-spoke constantly about the data they were given. This led to rumors and misunderstandings.
  2. Secure some aircraft that can operate in typical Santa Ana winds. Otherwise, what good is the equipment?
  3. Issue only voluntary evacuations. Watching dozens of reporters standing on the street next to someone's burning house should indicate that it is safe enough for the owner to be given the right to remain and fight for their property.
  4. Houses bordering on chaparral should be required to be built more fireproof than others. Hot embers blowing from the brush fire, when they reach the house simply race up to the eves and into the little air holes. Once inside the roof, it's all over for the structure.

Thursday, October 18, 2007

Human Flash Drives?

Recently, scientist have learned how to encode messages into the genomes of multiplying bacteria and then accurately retrieve the message 100 bacteria generations later. The message is automatically replicated when the bacteria reproduce. Here is one article on the research: Data stored in multiplying bacteria

Why did scientist do this? Because data stored in the usual electronic places, like hard drives, CDs, tapes, etc, can eventually be lost or destroyed. Scientist were looking for a different place to store data. They came up with a biological storage solution, DNA.

So, I started thinking... What if this technology was perfected and performed eons ago by intelligent visitors to earth. What if they stored their important messages and data in... the Human genome!

Wouldn't that make each of our bodies a flash drive for some alien race? Will they ever come back to retrieve their data? mmm...

Food for thought...

Monday, October 15, 2007

Tests and Conditioning

I had 5 tests today to prep for my sct. A purpose of these test is to set baselines for organ functioning that they can compare to future tests. The echo cardiogram was the most interesting. I laid on my side and watched a video of my heart doing its thing. Each of the 2 main valves were busy flopping around without a care in the world. This was happening inside of me? The tech got good readings so the test did not take long. The Pulmonary test was kinda hard. This one is where you are instructed to breath into a tube and exhale according to very specific instructions. I had to repeat this several times cuz I didnt exhale or inhale fast or slow enough. Afterwards I felt quite tired. Now I know what kids mean when they say 'that sucks' or 'that blows'. I found out my lung capacity was 5 liters. Good thing to know, eh? The last test was a blood draw. I think a record was set for number of vials filled. But I'm quite used to it. In 2 days I'll get another draw for the transfusion this Friday. Todays vials are earmarked for a different purpose. All in all, outside of my bone marrow, the rest of my organs are functioning very well. This is one giant point in my favor going into the sct next month. With the test results provided today, the NMDP ( will be contacting the donor(s) to line up the donor's schedule. My schedule will be subject to the donor's schedule. I should get a date this week or next.
Conditioning Decision
Last Thurs at an appt my doc said that they (the 3 doctors on the transplant team), had decided against a total body irradiation conditioning protocol for me. Apparently, my age is just over making TBI the best conditioning choice. Instead, I will get the full chemo conditioning. Whatever. At this point I'm in the hands of the good doc. I'm beginning to think that the less I try to understand, the better. Conditioning is what they do to you starting 1 week before the actual injection of donor stem cells. The purpose is to make you very sick so you never want to come back to a hospital. A secondary purpose is to eliminate your current stem cells and immune system so that the donated cells will have a place to set up shop. Kinda makes sense. Conditioning is really the part of the sct I'd really like to skip. But then the rest of the procedure would not work. So, gotta do it.

Monday, October 8, 2007

Blood Transfusions 101

First, the only real news I have regarding the purpose of this blog. I have 5 hours of tests next Monday a Scripps Green. Then Tues I see the dentist to get my teeth taken care of. It's not advisable to have dentists digging around in the mouth giving germs new places to setup shop. The immune system is still trying to reestablish itself for a year after a stem cell transplant. Now is a good time to see Dr. Needle. Speaking of the sharp doctor...
Ok. Read on. This will not be your average text-book read on blood transfusions.

Blood Transfusions 101.

This is what I've learned and experienced since Jan 26, 2006 when I was diagnosed with MDS, became transfusion dependent, and consumed 35 bags (17.5 liters) of Red Blood Cells. Pardon any irreverence you may discover below. This is the way I deal. Thanx.

What is transfused blood?
In a nutshell, transfused blood is usually packed, leuko-reduced and irradiated. Each 300ml packed is equivalent to 500ml unpacked. What is packed? They take the donors blood and pour it into a big wooden tub and have an Italian family stomp on it wearing nothing but shorts and tank tops. That packs it down a bit. To finish the packing process they run it thru uncle Jed's moonshine 'still' to remove about 40% of the H2O. Finally they stick it in a GE 1000watt microwave oven to 'irradiate' it. The end product is guaranteed to be 151% proof, redder than normal blood and free of common household pests.

The pint bags of blood are, of course, donated from kind people. The questions for xfusers like us are, who, when and where? The why, how, and the what are pretty well documented. The answers we seek will remain a closely guarded secret by the industry. Obviously, xfusers having answers to these questions will serve no purpose other than to make us nervous, paranoid, and litigious. We have to trust the medical industry to maintain the integrity and purity of the blood supply. They seem to do a pretty good job at that. So I wont alarm you by passing on idle speculations and rumors about what I've heard about the identity of donors.

Transportation to the Chemo room
The donated blood is rushed from the local prisons to the processing centers located very close to the facilities. There, the blood is processed as outlined above. After processing, the blood is poured into small plastic bags with a dozen little tubes hanging out the bottom. One of these tubes will eventually lead into your arm. The other little tubes are from the bag's previous escapades with other patients. The bags are stuffed into an old red igloo cooler packed with mystery ice. The cooler is rushed over to your clinic in an old truck very much like the one they use for public transportation at toon-town in Disneyland. The truck shakes up the blood, infusing vast amounts of oxygen; enough to support an small aquarium full of saltwater blow-fish for up to 3 weeks. Doctors say the extra oxygen is good for you.

The Chemo room. (The info from here on is actually from personal experience)
Once you arrive at the chemo room, which, if you are lucky, will be in a hospital, but in my case is directly behind the Pfizer plant in a run-down section of SE San Diego, grimacing nurses will direct you to a very old tweed recliner. I'm sure I've seen that recliner under Carroll O'Connor's butt on TV years ago. When you sit down, metal straps appear out of the chair's arms to restrain your arms. Naw! Just kidding about that. The nurses actually use plain old cloth straps. The nurses get to work. They open their red tackle box and pull out special needles made by Gamakatsu, the leading fish hook manufacturer in the world. I think the needles have serrated edges in order to keep them from sliding out during the transfusion. After several minutes of slapping your arm looking for, and eventually producing, bulging veins, a nurse somehow gets one of the large, serrated needles into your arm. I'm not exactly sure how that happens cuz this is where I always black out. When I come to, there is a needle and tube protruding from my arm and it is secured by duct-tape that seems to cover my whole arm. My entire left arm was rendered hairless months ago. The nurses say hair just 'gets in the way' and besides, hair removal with tape works so much faster than shaving. Before they get to the blood, the nurse first insists on transfusing you with some kind of clear liquid, which I believe is cheap Vodka. I dont know this for sure but I feel very woozy once they switch the turn cocks to let the blood start dripping through the plastic tubing. I think the Vodka is also supposed to lessen the impact of you having to slowly watch Charlie Manson's (bless his heart for donating from the prison) blood slowly make its way through 37 feet of clear plastic hose. I understand they have shorter and opaquer hoses handy but they get a kick out of watching patients fidget as they watch the bright red blood make its 10 minute journey through the clear hose into your arm. By the time the blood has reaches the point of no return near the entry point you could swear you see things swimming in it. I suppose the nurses deserve to have their fun.

The Transfusion
The speed of the transfusion depends upon your age and how much the nurses like you. If you are older they slow down the pump so that 'bad things dont suddenly happen'. The nurse takes your pulse and blood pressure frequently just in case, well, that the blood got mixed up somewhere during the packing or labeling process. If you are younger or they just dont like you they will put the pump in turbo mode. This is cool if you want to get out of there fast, which most everyone does. But this is not cool if you are accidentally receiving type B negative blood when you are A positive. If you survive the first 20 minutes or so, when the nurses temporarily leave the room you can press a couple buttons on the pump, speeding it up so you can make your 3pm shrink appointment. The whole process takes around 2 hours per pint, so bring plenty of reading material. What with the Vodka flush, the benedryl and the tylenol they give you up front, time passes pretty quick. Dont be surprised if you fall asleep. To snap you out of your tranquility when the transfusion is over, the nurse will gleefully remove the duct tape wrapped around your arm... very slowly. Then she will yank the fish hook from your arm. Finally, for no apparent reason, she will slap the insertion area on your arm. I've learned to yank my arm away before the slapping begins, and have been none the worse off for it. Your choice.

The Aftermath
Its probably different for everyone. But you should feel more energetic since the oxygen carrying capacity of your blood has been greatly enhanced by Charlie's kind donation. As the oxygen makes it way into your brain, your brain suddenly wakes up, remembering where you left your wallet, your keys, your dog. Its quite euphoric actually. You feel like you can actually climb that flight of stairs now, and get past '2 across' on the crossword puzzles.

Side Effects
Yes, there can be unwelcome side effects. After 35 pints I've only had a slight rash on my wrist and ankle after 1 transfusion. In regards to other side effects, do *NOT* look on the internet for side effects, especially do not look on any Jehovahs Witness web sites! Ok, I'll break it to you easy. The JV is that when you get a blood transfusion you get 'traits' from the donor. So, for example, if the donor was a murderer... you may start thinking very... dark... thoughts. Obviously hogwash. Strangely enough though, I've taken up humming to myself in the last few months. And, my handwriting has gotten a lot better. Mmmmm... Then, these 2 words keep popping into my head lately: "helter skelter". What does it mean?

Hope this helps!

Saturday, October 6, 2007

Why did I have to get an illness that is so hard to spell?

Credit must be given to the Greeks who really kick-started modern medicine. US doctors can speak fluent Greek by the time they leave Med school. Out of 4 years of medical school, 3.5 years is spent learning Greek. The remaining semester is spent learning medical concepts and taking various electives like surfing and golf.

Myelodysplastic Syndrome:
Myelo = Marrow
Dysplastic = Abnormal
Syndrome = With a course

It's all Greek. In English the disease would be called it "f***ed up marrow".
MDS = 'f***ed up marrow'.

Most people with Myelodysplastic Syndrome will just say they have a bone marrow disease or 'MDS'. If you prefer, you can call it by it's old name of Pre-Leukemia. But remember, MDS leads to Leukemia less than a third of the time. Knock on wood.
Stem Cell transplants are generally not advised for people over 60 years old. The age used to be 50. Just recently, better techniques have improved the outcomes for quinquagenarians. I am going to test these new techniques.

Friday, September 28, 2007

Decision has been made

I want to thank all of you for your support the last one and a half years since I was diagnosed with Myelodysplastic Syndrome (MDS).

I've been able to function well during this time. The most noticeable aspect of my condition would have been my color. MDS typically shuts down the bone marrow production of red blood cells so I may have looked kind of pale or seemed out of breath at times. MDS progresses at various rates, but eventually shuts down all red, white and platelete cell production. Until recently my blood counts have been remarkably steady. I've been going in for red blood transfusions every 5 weeks.

My last 2 blood counts have shown a decline in marrow functions. So, while I am still otherwise healthy, I've decided to move ahead with the only viable option, the only known possible cure; a stem cell transplant.

I will be working for another 2 weeks. After that I will be going in for extensive testing. Immediately following that, probably in late October or early November, I will be undergoing a stem cell transplant. 2 donors have been found that have 'near-exact' matches for my own cells. The doctors will destroy my stem cells and inject new ones from the kind donors. The new stem cells will set up shop in mymarrow and hopefully like their new digs. If everything goes well, my blood counts will raise to normal after 2-3 months. Then I'll need to be Mr. Clean, because my new immune system will be unfamiliar with all the nasty germs out there.

My medical disability will last 3 to 12 months, depending on how well my new stem cells like my old body and how rapidly I can gain strength. When I am healthy again I will try to re-enter the workforce.

Cathie, Dylan, Maddie, Bill and Teresa (Dad and Mom) have quite an interesting road ahead and I would be lost without their love and support.

Thank you for you continued support and patience.