Friday, June 19, 2009

Thursday: Flip-Flops and Important Update on Meals

This post was done early, 6:45 pm on Thursday, and for some reason the FeedBurner didn't send out to the subscribers - at least I didn't receive a copy in my inbox. So, I'm posting it again to see if it will now deliver to you...

Today when I woke up late at 8 a.m., I felt horrible...achy, swollen inside and out, sharp joint pain in my ankle and knee. It seems like each day it flip flops, wake up early good, wake up late bad, and by mid-day it turns the opposite direction. By 11:00 a.m. I was feeling much more energetic, and the inflammation and pain was gone, while yesterday by lunchtime I was flaring up with the GVHD and feeling exhausted for the rest of the day!

I think that fares well for me tomorrow a.m. then, if we can trust the trend. Having my energy in the morning will be great because my friend Heather is bringing over her adolescent German Shepherd after 9 a.m. Word is out that I am a serious Dog Whisperer-addict, willing to pass on all I've learned from Cesar Millan's techniques in dog psychology to anyone who will listen to me!

So after a late start, we were off to see Dr. Wolliver. I noticed that I was able to move much faster and on 2 feet this time when went to the Cancer Center. Just a few weeks ago, I was only able to be in the wheelchair to go that far, and I was very blah and puffy. Today, the doctor remarked that it was the most he's seen me smile in a while. He said that even though I have chronic GVHD, I'm able to manage it on very low doses of immuno-suppressants which is great. He's seen much worse cases. In fact he mentioned that one patient of his, back in the late 1990's who had a transplant for his leukemia, stopped taking his meds when he felt better, claiming he didn't need them anymore even though his doctors warned him. The doctor sadly reported, "the last 12 years for this guy has been hell." I guess the GVHD attacked with a vengeance and it's been hard to manage. I proudly admitted to being a very obedient patient, no stupidity here! I might complain a little, but I'll gladly take my medicine and listen to my doctors...seeing the progress I'm making now makes me trust them all the more. It doesn't seem as random as it once did to me. Funny that I would think these top-notch doctors are guessing at what to do or just treating everyone the same...they know what works and what doesn't. You just get a little delirious and/or paranoid when you suffer intensely for long periods. What people put up with to take care of me! Sorry people! You know who you are :)

Dr. Wolliver also reported to me that they are working on ways to get the GVLD-effect without the GVHD. GVLD is graft-vs-leukemia-disease which is no disease at all, but an efficient way of staying in long-term remission. I didn't realize how important it is to get some GVHD, fairly mild like I have it (nonetheless annoying). He said that there is a much higher leukemia relapse rate in folks who never have GVHD. Just goes to show that God knows what He's doing.

Mike was able to take me to Fairview Gardens for our CSA share pick up, and what a beautiful day. It's so fulfilling to pick your very own local, just-picked, organic veggies and fruit...the sights, the smells, the sounds of the giggles from children climbing the old Mulberry tree while you pick. If you are local to Goleta or Santa Barbara, get on over to Fairview Gardens and sign up for the summer harvest...there are still spots remaining and they will prorate the season for you!

After the farm, it was off to Staples. I stayed in the car, but the best part was running into Aaron Swaney and getting to chat for a while! Love the Swaneys and all their extended family and hope to get to spend more time with them in the future. They are such a great example of godly Christians who are "in the world, but are not of the world."

I've got way too much false energy from this steroid, even though it's only at 10 mg! I'm sensitive to these things. I say false energy because it has me going a mile a minute, non-stop talking, but I also feel slightly exhausted too. So I think I have all this energy, but when I go to do something I'm feeling too tired - a strange sensation which doesn't help my tendency to be over-ambitious!

Oh, one more thing I need to give those of you in our homeschool community a heads-up on! If you were bringing us meals, or are scheduled to, please redirect your love and energy to Stacy and Fred Zamora. Contact Linda Berkley through the Homesteader email list to sign up for a date. We are doing much better now that I'm more mobile and able to help plan ahead better. And thank you all for your amazing support! We couldn't have done this without you!

2 Corinthians 9:11-13

You will be made rich in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.

This service that you perform is not only supplying the needs of God's people but is also overflowing in many expressions of thanks to God. Because of the service by which you have proved yourselves, men will praise God for the obedience that accompanies your confession of the gospel of Christ, and for your generosity in sharing with them and with everyone else.

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