Friday, July 24, 2009

A Busy July = Fun, Sun and GVHD Symptoms

Lots of photos to share with you of our busy July! The flowers were a birthday gift from my dear neighbors and I love to capture them in a photo so I can keep them forever!

I just realized it's almost been a whole month since my last post, and so much has happened this month that it really deserves an update. July has proven to be my most active month by far! On July 3, my kids performed in a Broadway songs show then we went to De La Guerra Plaza for a "Tea Party" event. Afterwards we got ice cream which I found out I cannot taste, so why bother - first ice cream I've ever thrown away!

On July 4 we went to a friend's backyard BBQ. I was exhausted afterwards so missed the fireworks show in Goleta, but Mike took the boys for a fun time that night. Then, on July 5, I was still so tired and didn't have much appetite. I didn't eat until the afternoon and that evening, while I sat on the couch, distracted by the computer, Mike gave me two shrimp that became my demise. Within 2 hours my stomach was violently protesting, and I lost so much fluid out the forward and aft that I couldn't sit up any longer and Mike had to rush me to the hospital ER. They pumped me with IV fluids and the meds I needed to stop the severe stomach pain and I was better pretty quickly. I stayed overnight and was able to leave by mid-afternoon the next day. They ruled it food poisoning after determining there were no infections.

On Saturday, the 11th, the wonderful Steffen's had us over for my first birthday breakfast (thank you!) On Sunday, the 12th, my dad and his wife Martha came to visit for my and Adam's birthday. They took us to Paula's Pancake House for my birthday breakfast on Monday. I spent a lot of energy enjoying their visit by cooking, visiting Solvang, going out to eat, shopping, and even golfing (I just drove the cart), and of course there were our birthdays on Monday and Tuesday to celebrate. For Adam's birthday on the 14th, I made a great grilled shrimp and corn salad, topped off with a Royal Velvet cake from Anna's Bakery. Shrimp again. Within 2 hours, I suddenly had the violent gastronomical event happening again and I begged Mike to take me to the ER before it got as bad as last time! It was a good move. Again, I was helped and the next day able to return home in the late afternoon. The doctors asked me if my skin had been flushed when I was getting sick. In fact, it had been noticeably enough that I had mentioned that to Mike...all my skin was pink/red. That is a sign there was a lot of histamine in my blood, an allergy. Ohhhh! So that first incident wasn't food poisoning after all, it was an allergy to shrimp! Even last weekend, after an ice skating party, we went to TGIF's and I, of course, am staying away from shrimp, but almost every meal they have has shrimp. We ordered appetizers, and the nachos had grilled chicken on them. Later I was getting really nauseated in the order of the last 2 ER events, so I think that TGIF's probably grills its shrimp on the same grill as its chicken, causing contamination. When I realized this, I took a benadryl and went to bed - I'd also overdone it going to our ice skating party - I was in bed at 7 PM for the night! The benadryl seemed to work though so no ER for me!

The kids have been having a blast with our weekly writing class with 10 students at our house, golfing, bike riding to the beach with their dad a couple times, birthdays, ice skating, Cinderella rehearsals, and surf camp. Between that and the regular household chores, farm day on Thursdays, and looking for a good dog for our family, I've been quite tired lately. I also have been getting more sun than I probably should which is very difficult living in such a beautiful sunny climate. Getting worn out and too much sun has probably contributed to my GVHD (graft vs. host disease) getting worse. So we upped my dosage of prednisone to suppress my immune system more which I'll be weaning back down over the next several weeks. My doctor is pleased with the progress I've made and, at the last visit, admitted, "maybe we've been a little too hard on you," meaning he keeps pushing to cut down my meds and also expects me to not have all this fatigue and GVHD.

The wierd thing is at the same time I was having those stomach problems, which could have been GVHD-related, but we think is a shrimp allergy, my friend Terry who got his transplant at the same time as me, was also having the same stomach ailment symptoms I was having! His was a gallstone blockage and he's at UCLA having his gallbladder removed, bummer! At my last visit to UCLA, we were able to visit Terry and Monica as well as Elizabeth from Santa Barbara who is there for her stem cell transplant right now too. It was great seeing so many old faces from the nurses to the transplant coordinators, to the nutritionist who encouraged me to keep eating melty cheese, ha! There was a survivor's celebration which we were so late for we missed meeting my doctor's wife and son and hearing the speaker and all the stories. The speaker is an artist who published a book where he drew a picture everyday after his stem cell transplant. He works in Hollywood doing artwork for t.v. shows and movies and is very talented. Testing out my stomach on the way home, we stopped at Cheesecake Factory for a delicious meal that would have put me under if my problem had been gallstones! That was one full day and it had only been 1 day since I had been discharged from the hospital for the stomach ailment!

A few friends are taking me out to dinner tonight for my birthday at Fresco Cafe, one of my favorite local spots. Aren't they sweet? Tomorrow we're going to spend time with Trevor and possibly go looking for a dog some more. Sunday we have our friends from China visiting for church and lunch. And next week I'm going to try to get some good rest time in. My next doctor appt. at UCLA isn't until mid-August. I've been burning out on doctors visits lately so I'm glad for the break. I probably should get my blood work done next week and check in with my local oncologist just to be safe though.

I hope you all have been enjoying your July and I look forward to hearing from you soon! And thank you dear friends for continuing to pray for me. I'm tired and weak and your prayers are what keep me lifted up to win the battle before me.

Exodus 17:11-12

As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses' hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—so that his hands remained steady till sunset.

Wednesday, July 1, 2009

Correlations from Les Mis - Must-Read!

It has been way too long since Mike and I had been on a real date. Long car rides to and from UCLA are great, but don't really count as a date night! But last night, we were blessed to see Les Miserables at Solvang's Theaterfest, a quaint outdoor theater we used to go to often when we lived in Buellton. Many thanks to Marilyn Seibert for not only feeding and watching my kids, but cleaning my floors and dusting too!

We saw Les Mis on Broadway 11 years ago, and it became my very favorite musical. While it impacted me then because of the powerful themes of unconditional love and redemption, grace vs. works, justice vs. forgiveness, and more, it hit me in new ways now because of all I've been through and how much more I could relate with the characters of Fontine and Jean Valjean!

When Fontine is dying in the hospital, she is lying on her bed and singing a song to Cosette who is not there. She is obviously hallucinating and the nurse and Jean Valjean know that she doesn't have long to live. Before, I just thought this was just a technique to show she's losing it and is about to die, but now I realize how accurate that portrayal is of someone whose body is shutting down. The very thing happened to me as I read over my blog and learn about what happened while I was "losing it" There was a time I was comatose, for lack of a better word, and just last week did I read up on what had happened. My liver had failed, my kidneys had failed, and the ammonia buildup in the bloodstream affects the brain, causing you to hallucinate. Like Fontine, I also "saw" my children and reached out to them and other "visitors" I thought I could see in the hall, crying because they were passing by without stopping or responding. By the way, there wasn't even a window in the door or the room so obviously I was hallucinating...but it was SO real, absolutely clearly real! So when I saw Fontine behaving just as I had been just a few months ago (!) I found myself bawling because of how thankful I am to be here, alive, watching my very favorite musical so relativey soon after my trauma. By the way, I didn't sing any songs on my deathbed, just the hallucinating part, ha...

Another moment for me happened at the end when Jean Valjean is at the end of his life. After all the good he'd done, saving and protecting Cosette and raising her "to the light," and showing the same unconditional love and grace he'd been shown to the officer who sought him his whole life when he could have killed him, and saving Maris anonymously to bring him to Cosette, we find that he still has not forgiven himself. Maris figures out that J.Valjean was the one to save him and calls him a saint for doing so, while Jean Valjean cries as if it is not true. I think we all go through that from time to time (especially if we've ever been through a life-altering experience). Going through leukemia and the harsh experience of a stem-cell transplant, close to dying a few times, and blogging about it, causes others to look at you like you are special...I mean, I would receive cards and emails daily that spoke so highly of me that it was painfully touching...I would cry as intensely as Jean Valjean was in that scene, "No, no, no, it's not true, I've done terrible things, I'm very selfish, I don't deserve this!" These emotions can be very powerful, but it's an itneresting dichotomy. Yes, you can do wonderful things in the Spirit when you abide in Him, but at the same time your fleshy desires fight within you like pride - the desire to be first, to be best, to be perfect, etc...for some the sin might be more overt or more hidden like lust, lying, gossip or addiction. Even if you don't commit overt sins, the temptations are still there which can be all Satan needs to bring you down emotionally. If he can cripple you in the mind, making you ineffective for the kingdom of God, you can bet he'll try to do it any chance gets. That's why it is so important to be in His Word, the Bible, praying to God unceasingly, and fellowshipping with others who would encourage you in the Lord.

There is so much more I could say about this story. If you haven't seen it I highly recommend it next time it is playing in town. If you are local, it will be at Solvang Theaterfest through mid-July. Tickets are still available.

Galatians 5:13-18

You, my brothers, were called to be free. But do not use your freedom to indulge the sinful nature; rather, serve one another in love. The entire law is summed up in a single command: "Love your neighbor as yourself." If you keep on biting and devouring each other, watch out or you will be destroyed by each other.

So I say, live by the Spirit, and you will not gratify the desires of the sinful nature. For the sinful nature desires what is contrary to the Spirit, and the Spirit what is contrary to the sinful nature. They are in conflict with each other, so that you do not do what you want. But if you are led by the Spirit, you are not under law.