Wrapping things up

I had more appointments this last week - got poked, prodded and measured - mostly in preparation for the radiation treatments which begin on Tuesday. The measuring part was actually kind of interesting - they used a caliper-type device to take measurements of the thickness of my head, neck, chest, etc. and on down to my ankles so they can calibrate the dose of the radiation for each of those areas. Also they measured my lungs via x-ray so they could make customized lung-blocks (so the radiation doesn't cook my lungs), and the thickness of my chest wall via a CT scan. Then I stood in the radiation "chamber" (I assume that's what it's called - it looks like a glass-walled shower stall) and they drew an outline of my body for some reason - I didn't catch why. Tomorrow I will go back and they will re-check all the measurements, then the real thing starts the next day.

On Friday I had some outpatient surgery as they installed an intravenous catheter into my chest. I'll spare you the details, but what they'll use it for is administering the initial chemotherapy and subsequent meds, plus it can be used for drawing blood whenever they need it. Mark learned how to take care of it while I'm at home (daily "flushings," weekly dressing changes).

I also spent a lot of time at work, or working from home, whenever I could. It was kind of tricky trying to think three months in advance and write down procedures, reminders, etc. for everything I know will have to be done. I ended up with a seven-page typewritten list and cringed when I delivered it to my co-workers. It's another motivation to get well quickly -- I really do like my job and I look forward to getting back to it and back into my responsibilities.

Today Jessica and I went to Target and bought a bunch of stuff I'll need while in the hospital and in the temporary housing I'll be in afterward. It never ceases to amaze me how a short trip through Target can add up to a receipt with triple digits. "But I only got a few things..."

Mostly I am doing okay with everything as the treatment day draws closer - but the hardest part is knowing I will be away from home for a couple of months, and from the regular routines of my family and friends. I do not do transitions well. I want to pack up everything and everyone with me so I can be totally surrounded by the familiar while I go through this journey. And I know it's not possible. But I'm believing for God's grace to carry me through.

This morning on the way to church I started singing along with one of my favorite new songs (which I would upload here if I could) - it's on the new Hillsongs United Live cd; the song is called "From the Inside Out." Anyway, it was probably a bad idea to start singing - because then my heart kind of got all mooshy and started crumbling, and the tears started, and the mascara I just put on was making tracks from the corners of my eyes. Not a good look. But I was reminded yet again of God's faithfulness...how He is always with us, with an everlasting love that shines from His everlasting glory. In His perfection, He accepts us and covers us and guards us - imperfect as we are. His love is humbling, His strength melts my defenses.

"Everlasting, Your light will shine when all else fades.
Never ending, Your glory shines beyond all fame.
And the cry of my heart is to give You praise
From the inside out of my soul."

Favorite Things

Jessica and I went to see "The Lake House" last night. It was pretty good, actually better than I expected. I admit to having a hard time understanding how the two-years-apart time thing worked out at the end. Jessica has explained it to me multiple times and I almost understand, but not quite. I assume they don't want you to think about it that hard.

I decided that I like Keanu Reeves in spite of the fact that he sounds like he's reading overdubs for a Japanese soap opera.

Anyway.....

Sometimes you just have to go through some favorite pictures to cheer yourself up. That's what I did today.

Christmas morning...the contented aftermath.

Friends at the table (at Jessica's last birthday party).

Friends in the back yard (our dear friends, the Gilpins).

Handsome guy in the backyard.

Jessica experiences Birkenstocks.

Jessica and James with their Grandpa and Grandma.

QTs.

Sunbabies.

Windblown Sun Princess.

Under the arbor with my sweetheart.

Too Much Information

This week's marathon of appointments is finally over. I don't have another medical appointment until July 5th (except for the dental appointments I still need to make.) Yay.

On Monday, Mark and I met with a Bone Marrow Transplant (BMT) case manager who gave us an overview of what will happen to me, the procedures and medications, the risks and side effects, etc. Then I signed a stack of consent forms; it felt like we were buying a car except the atmosphere wasn't as cheerful.

I did not like hearing about all the potential side effects, especially about the mouth and throat sores that result from the radiation, chemo, and several of the medications they'll be giving me. She said most patients do not attempt to eat while they have the mouth sores (for about 2-3 weeks) so they are on IV nutrition. This did not make me happy, but I remember not feeling like eating much anyway when I was in the hospital in February since I couldn't taste anything and was nauseous. Still, I will be praying and asking God to minimize the mouth sores and nausea so I can get back to a semi-normal eating pattern as soon as possible.

I'll be on a special low-microbial diet when I do start eating, which also does not make me happy. (It's interesting to note that, among the myriad of risks and side effects I was informed of, I am most concerned about the food-related ones. Tells you where my priorities are. Let my hair fall out and my hands shake -- just let me eat good food!) Again, my prayer is that God will help my body recover quickly so I can get back to a normal diet (including fresh fruits and vegetables) as soon as possible. I haven't found out yet whether I'll be able to eat hummus -- this could be a big factor in how cheerful I am during my recovery.

Other appointments this week included my final visit with the hematologist who has been treating me (my care is now transferred to the BMT team), an echocardiogram, tests of my lung functions, a bone marrow biopsy, a meeting with a social worker, and a class on how to care for my intravenuous catheter (it is like a long-term IV port so I don't have to keep getting poked every time they draw blood or give IV medication). Fortunately for me, Mark was the primary student in the catheter care class -- my brain was having only intermittent moments of clarity by then.

I was still mostly stewing about the appointment with the social worker. I did not like her. I tried...while she was talking to Mark I was telling myself that she really was a nice person who meant well and I needed to give her a chance. But there is something about a certain type of person - in this case, a woman who did very little to enhance her physical appearance, speaking slowly in soft, low tones with a faint frown on her face while she asked questions such as, "How are you coping emotionally? Are you taking any recreational drugs?" I could feel my jaw tightening and my skin prickling. It's hard for me to concentrate with people like that; I'm just mentally trying to fix them. Put on some makeup, cut your hair, wear something that was made in this decade, sit up straight, quit talking to me like I'm mentally deficient, put a real smile on your face once in a while. Sorry, what were you saying?

I've got to work on that.

Anyway, when Mark and I got home last night we were rewarded with a lovely, healthy dinner buffet laid out by Jessica. I ate like a starving person (the food thing again -- I'm storing up), took 2 Tylenol, and watched baseball. I tried to watch "House" with the kids but had to change the channel during all the gory parts. Later, at about 10:30 p.m. which is when my household always seems to get a second wind, Mark and I were walking up and down the street with flashlights looking for Buster (the indoor cat who loves to escape). Then a bug with the body of a Goodyear blimp waddled out from under the sofa and Jessica trapped it with Tupperware until Mark killed it. We went to bed close to midnight, as usual, with Buster at our feet and the sound of crickets and the scent of summer jasmine slipping in through the screen door. I love being home.

Baseball

My mind is tired. Pre-transplant radiation and chemo will start in about two weeks, and I have a lot to do in the meantime. This week I have almost three days of appointments at Stanford (signing consent forms, echocardiogram, pulmunary testing, biopsy, etc. etc.) plus a couple other appointments I need to make (teeth cleaned, any possible cavities filled -- to minimize the chance of infection in my mouth). And stuff to do at work, since I'll be gone during my busiest time of the year. I know it will all get done, at least the most important stuff will. But my mind is tired from trying to figure it all out. So I spent the afternoon watching baseball.

When I was in the hospital for an infection back in early April, feeling very sick and weak, when I heard a familiar voice coming from the TV.

"Ray Fosse!" I was so delighted. Ray Fosse is the "color commentator" for the Oakland Athletics, "my" baseball team. In the midst of my sickness, I had forgotten that baseball season was beginning. A tear actually rolled down the side of my face, and even I was surprised at the poignant emotion I felt just because the baseball season was here. As I watched the game, though, I started to understand why I was feeling what I did.

When I was a kid in the late '60s, I learned to love baseball watching the Cleveland Indians in my hometown. They were a perpetual last-place team, but I was a faithful fan, perhaps because I felt like a perpetual loser myself. I sat up in my room with the radio on and hand-drawn (hand-drawn! with a ruler and sharp pencil! That tells you what my social life was like...) scorecard, carefully keeping track of balls and strikes, just sure that the Indians were going to break out and become winners. Of course, when they finally did become a winning team many years later, I lived on the other side of the country. But I still cheer for them anyway, except for when they play the A's.

Ray Fosse happened to be a catcher for the Indians in those days and was later traded to the A's, playing on their championship teams in the '70s. I started listening to him and the rest of the broadcast team about 15 years ago, when my son James was just a toddler. James was born loving baseball, and at age 2 could identify most of the A's players by their uniform numbers. So we watched together, and became faithful fans in the good years and the bad. I always had the game on, whether I was driving or working in the garden or painting a room. I liked listening to the broadcasters' banter, I appreciated that I didn't have to worry about bad language or offensive jokes. The only thing to get angry about was the occasional bad umpiring call. Year after year while I went through waves of personal growth and trauma, baseball was a peaceful soundtrack, where the saddest thing that could happen was an opponent's walk-off homerun in the bottom of the ninth. It was a faithful friend no matter if I was doing well or terribly, strong or weak, together or a mess. And I've tried to return the favor.

And I guess that's what tipped my heart and made me feel so sentimental in the hospital room. After several months of the feeling like my world had been turned upside down, of learning new terminology like platelets and neutrophils, of dealing with fevers and mouth-sores and poker-faced doctors...I was reminded that life as I knew it was still going on. Ray Fosse and his friends were still teasing one another in between batters, the Cleveland Indians are still trying to win a World Series, and the worst thing that can happen there is still a walk-off homerun. Hearing the game made me want to get back...to normal, to home, to my life.

Amazing Love

I was reminded yesterday just how much I love my children. It amazes me the depth and strength of the love that God puts in the heart of parents for their children, and yet to know that is but a small sample of His love for us. My son made a mistake that briefly put him in danger and scared the daylights out of several people, his father and I included. I should have been angry with him but the anger just wasn't there. All I could think of was how much I loved him and wanted him to be safe. I remembered the bone-headed things I did when I was his age (and there were many during that "temporarily insane" period that I think lasts from age 13 to at least age 21). I wanted to gather him and his sister onto my lap like I did when they were little and wrap my arms around them...except they are now both taller and stronger than me and it would be more comical than sentimental.

Both of my children have been beautiful surprises to me, in different ways. I thought of Jessica recently when I was admiring a beautiful piece of jewelry. I asked the shopkeeper about the stone and she told me a name I had never heard before; it was a rare semi-precious jewel. I could hardly take my eyes off of it. It seemed to hold all the colors of the ocean, changing subtly as I turned it in the light. That is how Jessica has seemed to me. She is startlingly beautiful, not fitting any mold or predictable set of characteristics. She has been a driving force in my life, especially in years past when I battled with depression and feeling like I was facing a brick wall trying to change myself. As I observed my strong, spirited yet vulnerable daughter, I realized how important it was that she have a strong mother -- she needed and deserved one -- and that motivated me to push on through. She continues to motivate me in words unspoken, and she's given both Mark and I delight and joy.

James is my kindred spirit, and yet very much his own person. Every mother says this, but I certainly have never seen a cuter child than my James as a little boy. He totally captured my heart; I adored him then and I adore him now. I wish for his sake that he was not so much like me, because I see him fighting many of the same battles I fought at his age, and I want to somehow sovereignly sweep in and rescue him from it all. But I know I need to let him walk that path with God, to "taste and see that He is good," to rejoice in His faithfulness. James is witty, insightful, and tenderhearted. He is one of my best friends - although I know parents are not really supposed to be "friends" with their children - I just enjoy hanging out with him. He is a treasure to me.