IT'S A SMALL WORLD...LIFE'S A JOURNEY...B+

Hi Friends...

God's really been talking to me today, and no-- I'm not on any narcotics these days. I just finished watching Extreme Home Makeover. I don't usually watch it, because generally while I think the families are deserving -- the houses are just a bit over-the-top for me. But anyway, I watched it today, and they were building a new house for a boy with leukemia. He had just finished chemo treatments and had a very compromised immune sytem. (Sound familiar?) Unfortunately, their house was full of mold. Because of all his medical bills, the family couldn't afford to renovate the house. And the mold was life-threatening to this boy. Well, they got their new mold-free house and the boy (named Cameron -- sound familiar?) started a foundation to help the hospital thats helping him. His foundation and his attitude comes from a motto -- It's B+ (positive) which is his bloodtype. I will strive to take the advice of a little boy when it comes to my illness.

And then, there's my Cameron ... and the "It's a Small World!" story. We have a new psychiatrist treating Cam and Nate since we moved. When Dr. Kumar (who now is in Agoura Hills) was going through Cam's medical history, Bill told him about all his hospitalizations. Remember when Cam was really little (5-6 years old) and he was hospitalized at Fairfax Psychiatric Hospital in Washington state? Well, guess who the attending physician was there at that time -- you guessed it, Dr. Rajiv Kumar -- the current doctor we're seeing. Bill pulled out Cameron's medical records and the discharge summary and sure enough, Dr. Kumar was the one who signed it. I was floored by that and by how far Cameron has come. I remember wondering how we would manage Cameron's disabilities (he's autistic and bipolar), but day by day we did-- and now he is the most wonderful teenager I know. So, I'll strive to remember Cameron and Nate's journeys with their illnesses. I know what a strong family we have and that tells me...I can make it, too :)

And finally, Bill was unpacking the last of the boxes in the garage today, and he found one of my journey magnets. Today, I saw it on the frig. If you remember, it went with necklaces spelling out the letters of the word journey, which I gave to my kids and to my chemo buddies (Shirlene, Annie, and Judi). Dr. Cohen has commented often on my strength and my HUGE support system (which brings the strength, I believe) and I am truly blessed.

Even if you didn't receive one of the letters (there were only 7), I feel blessed to have you on my team. I often reflect on the fact that people all over the country are praying for me. As the card says --

Join me ... I've sent you one of the seven letters of the word journey as a simple reminder that you and six others will form the circle of support I will need. Knowing, as I travel the road ahead, I will never be alone. I was touched when I saw this again -- just thinking that God and all my friends/family have my back. For example, when we went to church last night, I was talking to Pastor Jeff about how Bill has been trained to give me IVs. And we discussed that it's a real comfort to know that when we said those wedding vows almost 20 years ago ("in sickness or in health"), we meant them. I know that I can count on Bill no matter what! That's why I have the lion (bold protector) with Bill's signature tattoo on my back.

As far as today goes... we slept in for our last day of Thanksgiving break. I think that tomorrow will be a challenge getting up for school. I took the kids to the park and Bill even brought Bingo. I'm losing some puffiness and weight now that I'm walking again, but I look ridiculous with the face mask, sunglasses, and hat that I have to wear. But I can't chance anymore infections!!! Kind of looks like a cross between Michael Jackson and a bank robber.

I also drove over to Walgreen's to buy a special Christmas present for Molly. Again, I can't reveal that now, because she often reads or does my blog for me. But I know she's going to love it. We did some chores around the house. Nate and Isaac love getting their socks wet and soapy and skating around on the tile to clean it. So, they had fun and the floors are shiny. WIN for them, WIN for me! Bill and Molly and Isaac went grocery shopping and Bill is currently putting the food away. The kids are taking baths/showers and heading off to bed. And I'm waiting for my turn in the soaking tub. Even though we have 3 bathrooms with 3 showers and 2 tubs, the big soaking tub is everyone's favorite.

Tomorrow will be a busy day. I am determined to get in a good day of homeschooling. I also have 2 medical appointments. At 11 a.m. Karen, my home health nurse, is coming to change the dressings on my PICC line. And at 3:45, I have an appointment with Dr. Nathan (Infectious Disease Doctor) to see if the pneumonia is finally gone. Bill has even said I can drive myself, so that he can pick up Cam from school at 3:20. I do seem to be feeling better -- both lupus and pneumonia -wise. Bill says it's just a very slow process and I'm very fragile.

Your prayers for my continued health, especially no more pneumonia are much appreciated. If all goes well, when I meet with Dr. Cohen on December 10th, I will be able to start CellCept. That is an oral medication (in a way just like the chemo) which should keep my over-active immune system in check. I'll be happy to take it for the rest of my life, especially if it means less IV steroids and $37,000 chemo sessions. Anyway, what's a few more pills a day? I counted today and I currently take 42 pills a day. That's 26 different types but some are done more than once a day. And again, my sweet husband orders, picks up, and dispenses all these drugs to me. Of course, that's not including pain pills, sleeping pills, etc in the 42 number -- I have those pills to take at my discretion.

Well, I will go and see if the bathtub is free. Time to Saran Wrap my PICC line. The kids get a kick out of helping me to do that. I can't do it myself as the line is on my upper left arm. We have to tightly wrap Saran Wrap around the arm and line to keep it protected from the water.

More tomorrow....
Much Love,
Michele