Saturday, June 27, 2009

Amazing Day at UCLA

We left early hoping to beat the traffic surrounding the death of Michael Jackson, and ended up taking extra time ourselves trying to get something to eat on the way. We made great time as traffic wasn't so bad. What we found out is that the news organizations seem to be blowing the picture of reality out of proportion. Traffic was only mildly heavier, but everything was moving and we found out that the L.A. Film Festival was in town which accounts for that. Not to mention summer vacationers abound. We saw no shrines at UCLA and the crowds that had gathered the day before were all gone. I suppose a few people moved over to the Coroner's Office and his home, but watching the news, it appeared that the world had stopped and all were mourning in the streets. Not so - life was actually quite better than normal down there.

In fact, the doctor's office was empty when we arrived, and the phlebotomist took me right in (before my 1 PM appointment!) I went back to the waiting room and in just a few minutes I was called to see the doctor. My appointment to see Dr. Schiller wasn't supposed to be until 2 PM so imagine my surprise! Usually the place is packed and they are running at least an hour behind. One time I had to wait 6 hours to see the doctor!

I shared my symptoms of late - burning tongue, sore mouth, pain and tightness in my throat when I swallow food over the left side, fatigue, muscle stiffness and joint pain, and a bit of a rash. He confirmed that yes, they are all graft-vs.-host disease related. I was bummed to have graft-vs-host of the tongue...that means the immune system is attacking it and destroying the tissue with a loss of taste buds - so that burns where that is located, all around the tip and sides. The good news again is that this mild form of GVHD has an anti-leukemic effect.

When they shared what my CBC (complete blood count) was I thought they must have someone else's record! My hemoglobin is 12.6 (perfectly normal!) and my platelets are 125,000 (150,000 is normal). The platelets had dipped to 87,000 just last week because of my GVHD.

We were all done by 2 PM so we headed over to REI in Santa Monica so I could get a few sun block items - a lightweight, long-sleeved SPF shirt, pair of lightweight SPF pants, an SPF hat with flaps that meet under my chin, a pair of sun gloves, and some 50 SPF sunblock. I'm hoping I'll be able to be out more without fear of burning and increased GVHD symptoms. Lately, since I've been more active, I've been getting more sun (just driving and standing outside 10 min. here and there), but my sunscreen was allowing too much sun in for my sensitive skin and consequently I've been having more GVHD. I'd like to be able to take the kids to the beach sometime in my sun tent, but was concerned about the reflective UV. Now with head to toe sun block stuff I think I might be able to try an hour.

After REI, I was pretty exhausted and my hip hurt, so we couldn't do any more walking adventures even though I desired to walk the 3rd Street Promenade, hit the newsstand there, go to the Santa Monica Pier and ride the great ferris wheel. Instead, we drove the scenic way home via PCH (Route 1) through Malibu and into Oxnard. On the way through Malibu I decided to see if I could find my great uncle Bill Hoppe's house - a place I'd spent many summers during childhood roaming their property, playing at the creek, and spending time next door at the neighbors' wonderful home, a producer/cameraman who had a daughter my age. We used to play hide and seek in all the amazing cubbies and secret passages in her house, enjoyed playing on the hammock, and riding in the tire swing that hung from a giant oak tree. Sometimes we walked down to Zuma Beach and picked anise all along the way...ahhh the smells of that! At night it was fun to listen to the coyotes having their howling parties. So, just like the other childhood cravings, I just wanted to go back and see. It had been MANY years and my Aunt Rosemary died of breast cancer some years ago, but I wanted to show my kids where I used to play for a couple weeks each summer as a child. My great uncle Bill and his son Craig (2nd cousin once removed or something like that) were both home and were willing to welcome us outside. I toured the back of the property where I meandered the creek and headed up the hill to the neighbors. Some things had changed, some remained the same. My neighbor friend no longer lives there, but the kids were excited to learn that the new owner is the producer of the movie Bolt. They had landscaped their yard and put in an iron gate, so the old oak tree no longer had it's tire swing, bummer!

We only stayed 15-20 min. visiting, then headed home. All that activity and sun caused my muscle stiffness and pain to increase so that by the time I got home, had a bite to eat and got a bath to try to lessen the onset, it had turned into a migraine. This morning my migraine and nausea from it are gone, but I still have the stiffness which leads to it so I need to be careful not to do too much today!

This concludes my periodic update, reporting when there is news and not every day! Life is getting busier now that I'm more active so I hope you understand. Also, I enjoy talking with you when I see you! So many people read this blog and don't feel a need to speak to me in person since they know everything that is going on in my life which is a strange by-product of blogging. Another strange thing happens when strangers come up to me who are not readers of the blog, but have heard about me from a mutual friend. I know they are not on the blog when they ask how I'm doing, ha! The funny part is that I sound so ridiculous saying, "Well, thank you. Um, you can read my blog to find out if you'd like, aren't you a subscriber yet?" What has gotten into me? Then I start telling them how I am, and because I'm not practiced in speaking about my condition to new people, I end up saying way too much - yes, the recipient's eyes start glazing over! I have forgotten how to have a normal conversation - the old fashioned way with a simple "I'm fine thank you, and you?"

P.S. In case I don't write sooner, I'll be celebrating my 38th-birthday on July 13! Birthdays always mean more to me after a near-death experience :)

Hebrews 10:25

Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another—and all the more as you see the Day approaching.

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