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.

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!
Jim

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)

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.

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.

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.

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.
Jim