Arrived at Rotary House

I arrived at the Rotary House about an hour ago. My room wasn't ready, so I had to wait about 30 minutes. It was no big deal. Otherwise, everything went smoothly.

I called Kathy, my research nurse, to tell her I'd arrived. Today, as it turns out, one of the other trial patients I had so much fun talking to when I was last here is actually going home. Another patient I was worried about is still here, but she is feeling MUCH better. Praise God. I'd been praying for her A LOT.

So I've got a few hours to exercise, eat or take a nap if I want before going to get Lisa at the airport. Her first appointment is tomorrow at 10AM: registration. I have a couple of easy appointments in the morning, then I'm done by noon. I don't know what else they'll need Lisa to do.

One of the first things Kathy asked was...is Lisa feeling okay? Yes, I said, she's feeling okay. No cold or anything like that and emotionally...she's great as far as I can tell.

I had the chance to talk to Ina (Kirk's sister) on the way here. It was really good to talk to her. She was painting something in her house when I called.

I'll update after Lisa arrives.

Leaving Dallas for Houston Tomorrow

Tomorrow morning I'll be driving to Houston. I have no appointments, except to get Lisa from the airport at 9:35PM. We'll be staying at the Rotary Hotel on the MD Anderson campus. The apartment won't be ready until next Monday (June 4) after 3PM, but chances are we won't move in until after Wednesday. Lots of appointments. So it might be easier just to stay as close to the clinics as possible.

Kirk will probably join Lisa and me on Saturday or Sunday. He'll be bringing with him most of the stuff that I'll be wanting with me at the apartment, besides what I'll already have with me.

I bought Lisa a funny little surprise gift that I think will make her laugh when I pick her up at the airport.

I'm feeling much calmer about everything for some reason tonight. That wasn't the case yesterday. But I remembered to pray and breath. So I'm feeling better tonight. I haven't driven so far by myself since Thanksgiving. I'll have the GPS, so I'll be less likely to get lost.

Kirk is a little upset about me having to take off by myself. Please pray for him. I keep reminding him I'll be with Lisa, but it doesn't help much. He's been my primary caregiver for a long time now. It's not easy for him to give that up, I think. I mean, he puts on a brave face, but he's still having a hard time.

I keep remembered Ruth Reid, who had to be in Argentina by herself when she received her treatment. Michael could not be there for her, since he was sick in the hospital. How scary that must have been for both of them. But they are fine today. It's hard to believe you'll be fine when you're going through it. I guess that's what faith is all about. I heard someone once say that FAITH stands for Fun Adventures In Trusting Him. That's certainly true, but right now it doesn't seem particularly fun.

Getting Over It

"Wherefore receive ye one another, as Christ also received us to the glory of God."

Romans 15:7, King James Version

The version of the above verse, which was given to me yesterday by Chuck (my husband's brother,) uses the word "accept" instead of "receive," but I love seeing what words the old King James version uses to convey the same message.

Here, Paul is commanding the church in Rome to accept one another, in the same way that Jesus accepts us. The Greek word used in the original text is proslambano, which means: "to take to one's self, to take into friendship." The Roman church was apparently made up of both Jews and Gentiles, who just weren't getting along. Paul insisted that they all find a way to be friends.

Friendship came up in my bible yesterday when I was reading a passage in John. In it, Jesus defines friendship as a willingness to lay down your life for another person. Now, that's heavy! A bit too heavy for this culture, which defines friendship quite often by how much "texting" we do to a certain person or how much "face to face" time we spend with someone.

For me, it's about something that's scary to talk about. But isn't giving up your life for someone pretty scary? It has to do with friends I've made with people who have cancer. The problem with having friends who have cancer is that terrible fear which surfaces in the mind despite all efforts to vanquish it. The fear that the friend might not survive. How will I feel, if that happens? Since survival is a concern for anyone, including myself, where cancer is concerned.

Then I realized that I can "lay down my life" or set aside my fears of losing someone just by continuing a friendship with someone who is sick. This is not as easy as it sounds. For, I hate to say it, but I've been abandoned by many old friends that I think just couldn't bear up to the pain of possibly losing me. Either that or they just let me go, since it was easier and, perhaps, not as scary.

I'm okay with that now. Since I know that I have probably done similarly in the past to others that I knew who were sick...and I didn't even realize it. If you haven't been through sickness, it's really hard to "get" what it's like. Now that I know, I know I'll do better. It is more than torture to be rejected by anyone when you're going through cancer. But I understand. Because I've been there and didn't even realize what I was doing that wasn't helpful to the person who was sick.

But God is good and I've got a new perspective. Sick people may be "scary," but Jesus commands us to get over it. And that's what I want to do: get over it.

Memorial Day Weekend

If you opened my blog this past week and heard a sort of low moaning sound reminiscent of whales, I apologize. Reading my most recent entries, I realized I've let the tone of this blog slip into something I never intended. Sorry for that.

It's Memorial Day weekend, and things are looking up. I get to be with my family for the next three days! It's 10:30AM and Jacob's still sleeping. He's been celebrating his freedom from school with some long nights on the computer. We usually curtail such activity, but I can't help but let the boy have his fun.

Last night we watched Woody Allen's Small Time Crooks, one of my favorite movies. I love the scene when he and Tracy Ullman (who plays his wife) are at the avant garde theater watching a play. It's hilarious. I found a copy for myself at Half Priced Books, so I bought it.

Today, our beloved neighbors, Joe, Jen and Zeni are having a big party for Memorial Day. It will entail lots of meat and friends from all over the place. It is also Zeni's birthday! It should be great fun!

Jacob Home For Summer!

Jacob is home for the summer. Today, we spent much of the day running errands. I needed a notary to witness some signatures for a couple of Teacher Retirement forms, so we went to the bank. Jacob needed a few things from his Boy Scout Summer Camp list, so we paid a visit to Wal-Mart for that.

When we got home, Jacob spent some time cleaning up my iPod files...a never-ending task, since I have SO MUCH music on my iPod. But my tastes in music have changed a lot, so I finally started deleting songs.

Much time was spent going through his Summer Camp stuff: labeling, reorganizing, washing, tossing. Martin (pictured) decided just now to get into Jacob's plastic Summer Camp bin. He probably thinks that if he's quiet enough, Jacob won't notice he's in there. Then he'll be able to go camping with him. But Martin doesn't realize two things (because he's a cat!) One, Jacob WILL notice; and, two, Martin wouldn't like summer camp anyway--far too hot for anyone wearing compulsory fur.

Thanks and Updates

Yesterday I received a wonderful gift from my aunt Dorothy. She walked in her hometown's relay to benefit cancer survivors for me. She also set up a candle, so that people would say a prayer for me as they walked past. She sent me the bag that held the candle and a t-shirt to commemorate her walk for me. Thank you, Dorothy! May God bless you continually for blessing me in this way. Apparently, Sonora, Texas is a huge contributor in the Relay for Life. Thank you, Sonora!

It's hard not to cry when I think of all the beautiful things my family has done (and is doing) to bring me through this. I am asking for God to bless all the people who've helped me...in the past when I went through the autologous stem cell transplant and now as I am preparing to go on to the allogeneic stem cell transplant.

It's not possible to list them all, but these are the ones who stand out:

My sister, who is donating her stem cells so I may have a better life (not to mention her coming to Houston for an entire week, as is required by MD Anderson;) I love her so much!

My husband, who has literally loved me through all the pain and is the most amazing caregiver anyone could hope to have; I love him so much and I'm going to miss him, since he can't always be with me while I'm going through the allogeneic transplant.

My mom, who is giving sacrificially of her time to be with me in Houston during the allogeneic transplant; she has a job and a life in Santa Fe, but she's coming to Houston as often as she can, since my "caregiver situation" is in a bit of a crisis

My son, who will actually be my sole caregiver (even though he's only 13) weekdays in the month of July; this makes me cry the most because I would never want this for him...even though he's willing and able to do it; I would give anything to keep him from having to sacrifice what every child deserves...a carefree summer...just for me. I love him so much! He's an amazing and capable boy!

There are so many others who helped me during the autologous, too. Ina, who took care of the animals for several weeks, even though she's very busy and has a lot of animals already. Not to mention, all people who came up with so many ideas to help me during the auto transplant. Thanks to my dad for coming for an entire week during the auto and for his willingness to help us out with payment of a caregiver, if it comes down to that. So many friends have also supported me in so many ways, from prayer to house watching. Thank you and may God bless you!

Before I finish, I wanted to let ya'll know my schedule from MD Anderson so far:

5/31/2007 Meet With Catheter Nurse 1PM
6/4/2007 Catheter Insertion 9AM
6/5/2007 Receive Lisa's Cells 2PM

I don't know Lisa's schedule yet, but I'll publish it as soon as I do. There are other pieces to the schedule that haven't been filled in, of course. For example, when will I get radiation? the bone marrow biopsy? etc. I'm sure by tomorrow it'll be clear. And there could still be changes.

For now, I'm making lists and preparations. If you'd like to help or have any ideas, please don't hesitate to e-mail me at swilder@ccccd.edu. Every little bit helps...and is such a blessing.

Please pray for Kirk's safety, since he'll be traveling on weekends to Houston. We've probably got the first three weeks of caregiving figured out...but if anyone's available the week of June 18th, it would bless us incredibly. Any other week, of course, after that is open, too. Like I said, I'd really like to spare Jacob having to be my sole caregiver!

Abner's Outburst

"Abner became furious. 'Am I a Judean dog to be kicked around like this?' he shouted. 'After all I have done for you and your father by not betraying you to David, is this my reward--that you find fault with me about this woman?'"

2 Samuel 3:8

My One Year Bible has me reading passages I've never read before these days. A story from 2nd Sam about David and the followers of Saul. At one time or another I've heard or read almost every story of the bible. But, for some reason, I missed this one: I'd never heard the story before.

Maybe that is because years ago when I read the story of David and Saul in 2nd Sam, I was focused on the part that I really liked. That is, the part when Saul goes into the cave to relieve himself and David cuts off the corner of his robe without Saul knowing it. I always thought that was cool, since David used the incident to convince Saul how wrong Saul was about David's desire to kill him. For David could have killed Saul, but he didn't. He just cut off the corner of his robe.

But today I read about what followed after Saul tried to kill himself in battle to avoid being humiliated by loss. Basically, what ensues is a series of skirmishes between those who are loyal to David and to those who followed Saul. I was amazed that, after Saul had essentially killed himself, his men would continue to fight for him. The deception of Saul's men was certainly great.

When I came to the part when Abner, one of these squabbling men, said "After all I've done for you" I couldn't help but laugh. How familiar such a phrase is--even today--when people are fighting among themselves. The assumption in the phrase is familiar. Though I may not say it, I have felt it. That longing to hold people accountable for the things I imagine I've done for them.

How often do we experience this feeling when people do something for us or when we do something for others? For me, it is often a feeling of being in debt...of owing something to someone. The problem is not that I begrudge returning favors I've received. For I do enjoy returning favors (and Kirk is really better at it than I am.) The problem comes when people feel they can mistreat you after they do a favor for you. Nobody likes that. But it happens. And what do they say when you react? "After all I've done for you...."

Father, I ask that you prevent me from keeping an accounting of what I've done for others. Let me not say what Abner said, even to myself. As well, prevent others from saying the same to me. Amen.

Late Night Prayer

"Trust in the Lord with all your heart,
And lean not on your own understanding;
In all your ways acknowledge Him,
And He shall direct your paths."

Proverbs 3:5-6

I trust You, Lord, though my understanding shouts that things I wish to be resolved will never be resolved or people who have rejected me (or people I have rejected) will never come to acceptance. Instead, I've decided to acknowledge Your power to overcome the noise of what I understand, replacing it with the music of peace. In Jesus name. Amen

Dreams of Hair

When I had my visit with Michael Reid, I told him about the long and curly blond hair I had before the high dose chemotherapy. Both he and his wife said, "You'll get it back and more!"

Since then, I've had dreams that I wake up and my hair has grown incredibly. Last night and the night before, I dreamed I had long hair again. Interestingly, in one dream I was watching a movie with gang members. In another, I was with a motorcycle gang, talking to them. In both dreams, I wasn't afraid...not of them...or germs. (Believe it or not I still worry about being around big crowds of people because of germs.)

But the most significant aspect of the dream was my hair, which was past by shoulders, blond and wavy. I kept running my hand through it.

This obsession with hair in my waking and sleeping worlds, for me, reveals how focused I am on healing. For I now know that for hair to grow, you've got to be healthy. (I'm not talking about male pattern balding...that's different.) But after losing hair to chemo, it's clear that the chemo is starting to clear out of your system when your hair grows.

I now have a pretty decent smattering of something that looks like a fuzzy 5 o'clock shadow all over my head.

Teacher Disability Retirement

I discovered today that because I was a public school teacher for 10+ years and, before that, worked in the state system while a student and after at UT Austin, I can retire with full benefits under a TRS of Texas disability program. Of course, it all depends on whether or not I'm approved, but I don't think there will be any problem. I can also receive full health care benefits (Aetna! which is what I have now) for as long as I remain on disability. Since, as an adjunct professor, I only work part-time anyway, I can go back to my job and stay on disability, if I want to. If I understand correctly, even when I get better, as long as I'm not working full time, I can continue to receive the pension and health care benefits.

I find this very exciting for several reasons.

One, I can get back to making my contribution to our family income. As an adjunct, I never made very much money...but I FEEL better when I can see that my income is being used for going to school or vacations.

Two, I can stop having to depend on Kirk's work for my health care. We do pay extra for me and Jacob to be covered, so that will be one less expense to cover. As well, I can receive these benefits for as long as I don't work full time in the school system. That is very nice and takes more stress off of Kirk, too.

Three, I can feel as if all those years I spent teaching public school are still helping me now. It's a lot of work being a teacher...when I left I was tired of the public school system. It's nice to see those years pay off in other ways.

I'm sure it will take some time for me to get all the forms filled out, but I really think this is going to help.

Thanks to Renee for reminding me of my benefits, since she retired recently from the state and got me thinking...if she can do it, why can't I?

Also, thanks to God having His hand on my life such that I continued to be a teacher for so long, even picking up a 1/2 semester job four years ago in Wylie. This means I am "active," because it was less than 5 years ago. This helps to expedite things. Thank you, God!

Schedules and Details

Here's the schedule for the summer (so far.)

Tuesday May 29, 2007: Check into Rotary Hotel; Lisa arrives in Houston.
Tuesday June 5, 2007: Transplant Day (probably)
Wednesday June 6, 2007: Lisa departs Houston.
June 10-16, 2007: Mom in Houston
Month of July: Jacob in Houston (?)
Month of August: ???

God's Grace and Butterflies

Yesterday, I had lunch with a good friend from work. She is the main secretary for the professors, both full and part-time, in one of the buildings on the Preston Ridge Campus at Collin County Community College. When I was teaching, I'm sorry to say we only talked a little bit. I never really had time in those days to develop relationships with people. But since I took time to heal from cancer, we've grown closer.

She is a good friend to have here in this wasteland. When I first found out I had cancer, she was one of the first to pray with me. There are a few others at the college like her, but she means so much to me. I thank God for her.

It was a beautiful day, so we had lunch outside. I'd made us some sandwiches and a really simple trail mix. While we were talking, on three separate occasions a brown speckled butterfly came and landed directly in front of me on the table or on my hat. One of those butterflies had a mangled wing, but it flew the same as the other two: gracefully.

We both decided there was something special about those butterflies landing as they did on me when I would speak of the goodness of God. We'd talk about other things, then the conversation would drift back to the goodness of God...and here comes another butterfly.

Right now, I could use another one of those butterflies to get me through. But I'll take instead God's spirit, which rests on me as easily as those butterflies and gives me faith. So I can move filled with God's grace through everything that comes.

Garage Sale Saturday

Sorting through my closets for the garage sale this weekend has been a really good experience for me. I actually found a pair of my favorite jeans, but discovered I had about 20 pairs (!) of pants that really needed to be sold for one reason or another. They're piled up now on the floor of my closet, waiting for Saturday's sale.

Yesterday, I sorted books, adding two more boxes of them to the bags of books I had already decided to sell at Half Priced Books. Once again I was amazed at the number of books I'd been holding onto for reasons unclear to me at this time. For example, why do I have three copies of the American Heart Association's Cookbook? Or the yellowed copies of Macbeth or King Lear, when I've already got good copies of them taking up space on my bookshelf?

Tonight I'm hoping we'll go through the attic. By the way, I always wear a mask when I'm going through these dusty things. I can avoid a headache that way, for sure.

As it turns out, Jacob's Boy Scout garage sale is this weekend, too. So I donated the big industrial-sized desk we bought when Kirk was working at home. Four grown men (God bless them!) showed up yesterday to get it, and it took all of them to lift the thing into their truck.

Letting go is very good for the soul, I've decided. I feel lighter and freer for it, that's for sure. But one question keeps bothering me: why did I hold onto these things for so long in the first place?

Self Talk and Dieting

Through my doctor at MD Anderson, I've been able to talk with a 9-year survivor of multiple myeloma. When she was diagnosed, they treated it with an auto transplant only, since other protocols were not considered viable in the late 90's. Even though she was in remission after the auto, she also had three years additional years of chemo and steroids, which have continued to keep her in remission for six years. She once told me of her life before diagnosis, which she feels was fraught with abuse to her body that she never wants to repeat.

The abuse, she said, entailed a life-long obsession over her weight that actually started when she was growing up. Her mother, she said, was nearly anorexic most of her life, but was always talking about how fat she was. As an adult, she said, the cycle continued, and despite being very thin, she constantly believed herself to be overweight.

When I first heard her story, it made me think about this phenomena of body abuse by dieting that is so prevalent in America. Though I never thought about my weight when I was growing up, once I got out of college I started having issues. I don't think I really obsessed about my weight until I gave birth to Jacob, since it was so hard to lose the "baby fat" I put on during my difficult pregnancy. But at age 40, when I had already done a couple of weight-loss programs (that were safe and worked for me,) I probably did begin to really obsess about my weight when it just wouldn't come off again. I say that because I think it is when I turned 40 that I began to "see myself" in my mind as being much more heavy than I actually was.

For example, if you look at my profile photo, it shows me with Kirk on our summer vacation last year. I look back at that picture and cannot believe how beautiful I look. I'm not fat; I have hair; and I've got a handsome man beside me. What more can you ask for? But, at the time the picture was taken, I was sure I was a fat, ugly cow! Amazing.

Now, I realize that my inner voice--that unrelenting way we all have of speaking to ourselves about ourselves--can be used to tear down my self-esteem more efficiently than anything other people might say about me. I also know that the opposite is true. That is, I don't need to be seeing myself in such a negative way. I can be free of judging myself so harshly all the time. I can be good to myself and use the voice to increase my health.

Now, all I strive for is health. I like being able to fit in my clothes, but I'm not happy because of this. I'm happy because I can get on my bike and ride for three miles without too much strain. I'm happy because I have energy to do most of the things I need and want to do. I may not be as healthy now as I would like to be, but it is only a matter of time.

I know one thing: I have no desire to ever treat myself the way I used to treat myself concerning my weight. Yes, it's hard to be overweight. I gained 15 pounds taking steroids! But, I realize now, that should not have been cause for me to beat myself up. I should see it as a temporary situation than I've working to rectify by eating right and keeping active.

Unloading Unwanted Things

Carpet stretchers came today as scheduled, and they did a great job of getting our carpet to lay flat. Some of our larger pieces of furniture had to be unloaded before they came, so that they could move things around, if needed. As a result, over the weekend I unloaded two giant bookshelves, the bookshelf in my study, and brought all lower shelf clothes up to the second level in the closet. Kirk went through our huge three-drawer filing cabinet, then shredded old stuff that should have been thrown out long ago. His desk, which still sits in the bedroom, though he no longer uses it, was also emptied and cleared.

The best thing about all of this is it gave Kirk and I the opportunity to re-evaluate all this clutter we have around the house. This weekend we're having a garage sale. I know many of the things I unloaded from bookshelves, closets and rooms are going to end up being sold at that garage sale. And I say...hallelujah! I can't tell you how freeing it is to look over in those corners of the bedroom that once held so much STUFF and see them emptied. It is very good just to keep letting go of all this unnecessary garbage.

I think when I start to put books back on the shelf I'll be asking myself: do I really want this book to continue collecting dust on my bookshelf? Could I get it at a library if I needed it? Does it hold sentimental value? Or am I just collecting it because its a classic that I THINK I'm supposed to have?

Soon we're actually going to venture into the attic to go through all that STUFF. What an experience that will be! It's a wonder the whole ceiling doesn't cave in with the load of it all.

My goal is to make enough money for a lap top, so I can write while I'm sitting there hooked up to the IV bag every day for four hours.

Fellowship in the Wilderness

During my first and second year at the University of Texas in Austin, I lived on a floor in Blanton dorm that was half evangelical Christian and half party animal. Both groups had their network of friends that stretched across the university like vines of ivy that sometimes intertwined. Since I was into the punk rock scene at first, I was a party animal despite having many evangelical friends. I think for me the change over to evangelical started happening when I realized I could have as much fun with the evangelicals, but not have to deal with a hang over the next morning.

Christians in the 80's at UT Austin were like that. Like the girls in the song, they just wanted to have fun. Many nights I spent hanging out with these crazy evangelicals who wanted to study the bible, pray and sing until the wee hours of the night on weekends. It got even funner when the Holy Spirit movement caught on. Our energy for joy was boundless. Instead of going to 6th street to drink, my friends would go there to chat about God with anyone who was interested. Lots of people were saved, and it was fun making it happen.

It got really fun when punk rock Christian groups started forming bands! (I remember one group; they called themselves "One Bad Pig!")

I think, at the time, I had no idea how great I had it. Perhaps it was just a phenomena of the time and place, but my fellowship with other Christians just hasn't been the same since. It is as if I'm walking in a wasteland, I've sometimes said to Kirk. Lately I've been reaching out to friends who reside in pockets of fellowship all over the place. But, in contrast to my college experience, I've found only a few.

And I am fully aware that much of this has happened as a result of my own actions. But it is also the area and times in which I live, surrounded by neighborhoods without strong churches. I know it sounds judgmental on my part, but it's true--at least compared to my experiences in Austin. So I'm asking God to bring this joy back into my life.

Sometimes I think it is just a matter of degrees. I have friends I talk to regularly, and how I love them! I have a beautiful family. I even have a church now, filled with wonderful Christians who pray and believe the way my 80's Christian friends believed. But I remember a time when the church I belonged to had something going on every night of the week. In fact, if I ever wanted to talk to someone, there'd be someone at the church working on some project or another. The church was an ACTIVE place. Now I drive by churches and the parking lots are empty most days of the week. Even on Sundays, churches clear out rather quickly as soon as the service is over. I think everyone is just so overwhelmed with all they've got to do outside the church. They don't have time for enjoying each other.

So what can I do about this? Maybe it's already been done. That's because in two weeks I'll be in Houston for three months. In fact, I'll be sitting in a room connected to a bunch of other rooms filled with people going through the same thing I'm going through. Surely there can be a connection of fellowship in such a setting. For such, I'm also asking God.

As My Hair Grows My Appetite Returns

The fuzz on my head (pictured) is definitely getting...well, fuzzier. I noticed this last week for the first time. I was running my hand over my head when I felt this stuff like kitten fluff. I ran to the mirror, trying to see on my head what I could only feel. But there was nothing to see. Later, Kirk said he could see the tiny hairs, when they were in a certain light.

It wasn't until I was in Ross shopping for t-shirts that I actually saw the hairs for the first time. I guess the light was hitting the top of my head just right in the dressing room, but I finally saw the hairs.

Now, they're much longer (comparatively) and I just love to feel them there.

Nobody loses their hair in the allogeneic transplant, so I'll likely be able to stop wearing this old black hat before long. I love the wigs I've got, but summer heat is setting in...and it's just too itchy. Oh, well. I like to keep the wigs around in case the mood strikes me. But I know fairly soon I won't need them at all.

One of the people I met on floor 10 (where they do allos) at MD Anderson was a young woman who'd lost her hair 19 months ago during treatment for Lymphoma. She now has beautiful hair somewhere between her chin and her shoulder. It reminded me of the hair I had when it was that length. Blond and curly. She showed pictures of herself when she was bald, just as a point of reference. For some reason, it was so encouraging.

Hair is more important to me than I ever dreamed. I know one thing I'll never "dis" my own hair again. I did that a lot before.

As my hair grows, my appetite returns. I still forget to eat, which isn't good. But I do get hungry. Food tastes better, too. I ate steak last night with sweet potatoes and green beans. For the first time, I actually wanted to eat it all and more! It's great to have something so simple back in my life: the ability to eat and enjoy the food.

I'm also getting to where I'm MUCH less depressed. In fact, I could probably say that I'm NOT depressed most of the time. Every once in a while, I'll get a little sad about something, but then God removes it from me. I know this because I ask Him to and He is always faithful to do what I ask.

God is good!

One More Thing

My fuzz is getting longer!

Good News

I'm back home in Frisco again, and the visit with my transplant and myeloma doctors at MD Anderson went so well I am filled with peace. That alone is a miracle.

The other miracle is that my white AND red blood counts, along with my platelets are now back to normal. I've talked to and read about many people with suppressed immune issues. One young woman I met said it took her a year just to get her white blood cell count into the normal range. The doctors told me I'd EVENTUALLY see my white blood and platelets return to normal, but that my red would be much slower. Not so for me, since God is healing me.

While I was there, I met my research nurse on the 10th floor, where my treatment during the allogeneic transplant will take place. I was able to talk for a couple of hours with Ralph, who is in the tandem auto-allo trial. It was surreal talking to this man, sitting on the bed in his jeans and button-down. His coloring was awesome. He had hair. He just didn't look sick to me at all! We talked about his experiences with the allo, the auto and multiple myeloma. He was a marathon runner before cancer stopped him in his tracks. The allo, he said, has been much easier than the auto. But he did mention that a younger woman in the trial was having bad nausea (probably from the cyclosporine, which has a nasty smell.) Another cancer survivor (quite young, but with Burkets Non-Hodgkins Lymphoma) joined us and we talked nausea for a while. The best tip I got for that was to keep a small amount of food in your stomach to avoid nausea. Everyone patient I met touted the need for food bars eaten in small amounts during treatment.

The other really important bit of news I received was that my research nurse and her team at MDA have reduced significantly the incidence of Graft Vs. Host in this trial. They simply do not tolerate it. And their percentages are much less than in the Italian study so far.

Everyone sees me as a very good candidate for the allo. And I feel as if I'll be in the best hands at MDA. And I feel as if God has made a way for me to do this. Whatever other concerns I might have--whether its caregiving or fears of feeling bad--I give those all to God. For He has given me the ability to feel peace about my next step and I have not had that AT ALL before.

Also, I have no protein spike. Just a .1 (what one doctor called a trace) m-protein. It is what Dr. Weber calls "a very good partial remission." But, as one of my other doctors said, the allo will knock that .1 right out. I know, even this, is part of God's plan.

As to timeline, at present we are looking at the allo beginning around May 30th. If this works for her schedule, Lisa will first go through some tests to make sure everything is a go. Then, that next week, she'll give her cells, which I will take immediately. The rest is fluids and close monitoring every day for the next few months.

Steam

These are the times that try my soul. There is a bursting in my being that just will not quit. It's like a pot on the stove that started bubbling days ago and is just now starting to rattle and spew. I cannot contain it. The steam must have its out.

How else can I describe it?

I stand back and look at myself. Rising to this point of boiling. And it is really just vapor, without substance, without shape. It is heated air. Not real. For my body and my God tell me I am healed, but my mind will not give up. It whispers and sputters. What? I can hardly put words to it. Except that I have lost a part of myself that cannot be named, but still demands to cry out to me as it is being pulled away.

Is it my security? innocence? certainty?

For all these things have fled my heart, leaving skid marks so real to me I'm sure others can see them streaked across my face. But even this is not true.

The rebel in me has, nonetheless, arisen. The one who will not take things sitting down. The self that is determined to accomplish at least the most essential of purposes God gave me, which is to live. And live well.

So, here is my prayer:

God, I love You.
And I believe.
Please help me with my unbelief.
Intervene continually and creatively, as only You can do, as I make my way across this landscape of suffering.
Forgive me for seeing myself contrary to the way You see me.
Grant me the ability to adopt Your reality and cast off this black haze, which consists of nothing.
Thank You for Your grace and mercy.
Heal Renee. And hold me in healing, too.
Unleash (even more) Your divine help into my caregiver situation.
Give Your wisdom for my healing to my doctors today and every day.
Amen.

Dinner With Old Friends

Tonight, Kirk and I had dinner with old friends from my Hope Chapel days in Austin. It was great to see Renee, who's fighting cancer just as I am. I know we'll see her and her husband, who pastors a church in Austin now called Red River Church (not too many miles from where Hope Chapel still stands,) more before all of us return home Tuesday. We might even be staying at the same hotel, as it turns out!

We talked for hours at Alladin's, a Mediterranean food place, we ended up going to when the place we'd originally chosen closed early for the evening. Renee's husband, Keith, drove us to the restaurant, while Renee and I chatted without stopping from the back seat. She's been through a lot (as have I.) We talked about transplants, since her doctor has spoken with her about doing one. We had been through the same nurses in apherisis, but Renee had been more often. She knew everyone by name, including their personalities and ways.

She will be involved in a new treatment trial from May 20-25th. Two people have gone into remission with the medication, and I know it will work the same for her.

Please pray for her to be healed, even as you are praying for me and all the concerns I've had.

Two-Day Trip to MD Anderson

Sunday morning, probably before the sun comes up, Kirk and I will be heading to Houston. My first "appointment" is on Sunday at 9:45AM to give blood/specimens. Monday: fast track to give another blood specimen, then a meeting with the stem cell transplant team. I decided I wanted to consult also with Dr. Weber, my myeloma doctor, about the allogeneic transplant. Kirk and I will be listening carefully, taking notes, and considering options. What I am mostly looking forward to is getting the results from the blood/specimen tests because I know they're going to be excellent.

Our lodging arrangements are a bit haywire. Since we have Sunday night at the Rotary and Monday night at Springhill. Rotary is nicer generally. We save on parking when we stay there, but so far their booked for Monday. But I find we can usually "extend" if we want to.

I am both nervous and calm, which is a strange combination. It's usually an emotional experience for me to go to MD Anderson. I think it has something to do with simply having to face the cancer head on, as if I were playing chicken. That is the only way I can describe it. That is the feeling I'm managing, even now as I write.

Despite this, there is also a level of knowing that lies under the emotions. I know all is well, even though I don't feel that way every minute of the day. Sometimes I think it is just my stomach and not my emotions at all. A little bit of nausea. A little ache in my stomach. These are things I associate with emotional pain, but they could also just be physical. I'm eating more these days, but my stomach is still not quite ready for it. That may be part of the problem.

Anyway, life and God are good. I have my family home with me today. This is all very good.

Jacob Receives an Achievement Award

Last night, my son Jacob, received an award at his school for achievement on the SAT he was able to take in January through a talent search of Duke University. Of the 70,000 or so academically gifted 7th graders who took the SAT or ACT, Jacob scored in the top 12%.

There were only six students, including Jacob, from the middle school who scored high enough to receive recognition.

I'd also like to say that Jacob has been doing better in school. He brought up all his grades in every subject, except one! He has been keeping up with his homework, as well.

I am so proud of him!!!!

On Writing and Research: Hammering Out My Thesis

Last night, I spent an hour or so looking for the notes I had already compiled last Fall for a paper on Elizabeth Barrett Browning's epic poem Aurora Leigh. Then I skimmed through the books I'd collected on the subject that I'd been able to keep all these months. I found print-outs of my prospectus and an important three-page article that had caused me to consider the topic in the first place. On my computer, I found websites and articles I had saved there months ago.

But it wasn't until today when I spent most of the day today writing the paper that things started coming together for me. Though I was able to hammer out only two pages in several hours, it didn't bother me. That's because I was working out what I would propose and support in the paper as I proceeded to the conclusion.

At one point, I'd come to that all important moment in the writing of a paper when you realize that you've got more research to do. But I keep getting this feeling that I've actually already done the research, since it seems to me that I haven't found all my notes. I'm hoping this is true, as I'll be searching my computer for bits of tucked away notes and saved articles.

What's most interesting to me is that I made a discovery about myself as I was working on this project. I found out that many of the opinions I once held without really thinking about them were no longer ones I could support without question. I found myself questioning sweeping statements made by the professors and scholars who write the articles and books I consider as material to be included in my paper. Not that I'd accepted without thinking the statements these people were making before, I just didn't always know with clarity my reasons for questioning them.

To see my own critical perspective solidifying is very good, since it gives me the ability to be rather opinionated. And being opinionated is good when seeking a Ph.D. You've got to know where you stand.

For example, today I found an article entitled "Covert Appropriations of Shakespeare: Three Case Studies." Since my paper is about E. Barret Browning's use of the Shakespearean sonnet in Aurora Leigh and the article argues that Barrett Browning's poetry is an example of covert appropriation, I decided to read the article. Now this was an article that previously I would have considered carefully because of its bravery. I've always admired bravery in academia. But as I read the article it became clear to me that the title of the article was pure sensationalism. The writer had entitled the article to draw in readers, but had backed away from actually arguing his claim by the end of the article. I don't think I would have seen this as clearly before.

Getting On With Life

My stomach must still be in recovery because many mornings I awaken still to nausea. This morning, I must confess, the nausea was worse than usual. I tried drinking hot tea, but it didn't get better. Of course, I prayed about it. But still no relief. I decided to distract myself by watching television; I wrapped a blanket around my feet. Thankfully, I found a program where a morning newscaster was visiting Bhutan, a mostly Buddhist country in the Himalayas. I've always wanted to visit Bhutan, so it was a good distraction. Despite this, my stomach kept on really bothering me. I remembered what pill my doctors at MD Anderson recommended for me to take, so I took one of those. It's no good being nauseated when throwing up will just dehydrate you, so I felt taking the pill was a good decision. Since I hadn't taken this pill in over a month, the affect was instant; I found myself falling asleep on the couch.

When I awoke 2 hours later (!) my stomach was much better, and I thought to myself how I needed to get on with my life. Whether I had a nauseated stomach, no hair, whatever...I needed to get on with my life.

I had some rearranging to do with regards to our lodging at MD Anderson for May 6th-8th, so I did that first, knowing also that at 1PM I'd be getting together with friends for lunch. Something I hadn't done in a long time. I still had time before the lunch date, so I called one my favorite professors at UTD, Fred Turner. He was delighted to hear from me. Soon we started talking about an Independent Study on Milton's Paradise Lost that I'd been thinking of doing with him. He had the time and we set it up for the Spring. I'm supposed to avoid crowds for three months after the 2nd transplant, so the independent study would be perfect. I wouldn't even have to come in that much and we could do most of our correspondence by phone or e-mail. I'd been wanting to study Paradise Lost for years, so it thrilled me that this would be possible.

I went to lunch next door and even wore my wig. The short one from mom's friend (who so kindly is allowing me to borrow it.) This too seemed like a way to get back to my life.

I've also got a paper to write that is due at the end of the summer. It's on Aurora Leigh by Elizabeth Barret Browning. I got UTD to extend until the end of the summer the 13 books I have kept from their library. A wonderful and kind-hearted woman I've learned to depend on at UTD named Linda Snow made it possible to make the extension.

I'm getting housework done, too. Not letting it bother me that I'm so behind and there is so much. Two weekends out of town can put you behind in the area of housework.

I'm getting back to my life, and, when I'm in Houston I'll take my life with me. The paper that's to be written, the books to read for the Fall, and the desire to get on with life.