Wonder where I've been?

Dear Friends and Family,
I'm finally updating my blog. There is so much I have to say but I will try to give only the highlights. However, before I begin, I'd like you to take note about commenting on my blog. When you leave a comment, the address that I receive is a "no reply" thus I'm unable to answer your questions because I don't have the corresponding email address (e.g. "rs" had left me a message but I have no email address to answer her/him). If you put your email address in the body of the message and you don't want it to be posted, just let me know and I can delete that part (but please put your email address in the "message" portion if you want a reply).

Medical Life
I did an experimental chemo the first two weeks of October. While it knocked my numbers down (which is good), I had a horrible reaction by breaking out in blisters all over my body. They, in turn, got infected, and I woke up one morning in mid-October unable to move. Fortunately, Keith always makes sure I have the phone next to me; I was finally able to lift my arm and reach the phone. I called Keith and said I needed to go to the hospital immediately. I took some pain pills and the paralysis (anyone out there know anything about this? - we don't) left before we went to the hospital. What motivated me to get moving was hearing Keith talk to his brother about how they were going to carry me down the stairs! We went and they did a lot of blood tests on me. Everything looked fine and I was sent home.

The next morning I got a phone call from North Austin Medical Center (NAMC) and was told to immediately come to the hospital. Actually this turned out to be God's intervention because the blisters on my buttocks had just that morning gotten very infected, and I was in a lot of pain. So I went the hospital and it turned out that I had MRSA (staph infection) in my blood which is very serious. Normal people have fever and chills when the blood is infected. Of course, I never run a fever or have chills. So we returned to ER and they finally put me in a room and doctors began coming in; I don't remember who all I saw. They began loading my body with antibiotics (every 3 hours a new IV bag). I needed to continue on the antibiotic regimen. The cultures never showed staph in my body again but they still wanted me to do 2 weeks of antibiotics. In order to do this so I could go home, they put is a PIC (portable catheter) line in my arm to receive the antibiotic. When Dr. Duvic from MD Anderson (MDA) heard I had a PIC line, she hit the roof. She said PIC lines are not for MF patients because of infection. I was discharged and sent home with my IV dangling out of my arm anyway.

The day before we were going to Houston for our normal check up, I had told Keith that something was wrong with my PIC line. That morning's infusion went straight to my breast (suddenly the perky little breasts I had in high school). When we went to MDA the next day, I told them that my PIC line was really bothering me. We were able to get an appointment with the PIC line specialist; when she unwrapped my arm, she started gagging because I had a horrible infection. And of course, me being me, it turned out the bacteria is very rare. So they immediately admitted me to the hospital. I have to tell you MDA food was incredible! For instance, I had garlic shrimp with linguini the first night. It was quite good! They put me back on antibiotic IVs to finish out my two weeks. After 4 days at MDA, I was sent home.

The following week, I became very bloated. I went into the hospital weighing 114 lbs. and came out weighing 141 lbs. By the third day of being bloated, I begged my mom to take me to the ER. She didn't want to do that because she wanted me to go back to MDA where they understand this cancer. So Keith took me down to MDA, and I was admitted again. They started running a bunch of tests on me and discovered I had fluid on my lungs. So they did a procedure where they drained the fluid off, and the next day I actually had strength to sit up without assistance. My mom had been complaining the reason I wasn't mobile was because I'd been lying around in bed so much. I was so excited that I could finally move with little effort. I kept overhearing Keith and the doctors talking using words like crashing and I thought to myself "they can't be referring to me." Earlier this month in January, Dr. Duvic said they almost lost me. And I had no clue.

My blisters were under control, no staph infection in my blood, and I could move on my own - I was sent home. I was very sad to leave the food and being waited on hand and foot. And I didn't tell you all about the whirlpool baths I had everyday. I would be taken to this room that had a huge, steel whirlpool, and put on a stretcher like apparatus that was then lowered into the nice, warm, soothing Jacuzzi. I would be washed by the attendant and then they would take me out, and rinse me off, apply this cream all over my body, wrap me in hot towels, lotion me up, and then send me back to my room. I was released the day before Thanksgiving. We had Thanksgiving at my mother's house. And every time I would try to get up and help, she would tell me to sit down. Talk about mixed messages, she been yelling at me for months to get up and now that I felt well enough to be doing things, she was making me sit down.

Then another nasty development - I began getting tumors on my face in October. Finally, in December one grew so that it looked like someone stuck a cherry in my face. It was quite unsightly needless to say; I have gotten very good at bandaging it. Because of the tumors, Duvic wanted to put me on another chemo called Gemzar. I could see some reduction in the tumors after my treatment but it was happening very slowly. So a couple of weeks ago, Duvic added another chemo to the mix called Doxil. This combination seems to be working well as the cherry tumor is disintegrating. The other wonderful thing about this chemo is that I can have it done in Austin and don't have to go to Houston every week. I now do two rounds in Austin and go to Houston for my third round, with a week off each month. The new regimen is every other week. Not having to go to Houston every week has greatly reduced my and Keith's pressure level.

Some other funny happenings: when I got into the hospital at MDA, in the bathroom, the vanity was such that I had a good view of myself in the mirror (I forgot to mention that my eyes had gotten so bad that I could hardly see). I was shocked and finally understood why Keith had qualms about taking me out in public. I was horrified how I looked. Also, I don't have any hair. Is because: a) the chemo made my hair fall out or b) I began looking like Jim Carrey portraying Count Olaf in A Series of Unfortunate Events? I had a tumor on my forehead and no hair would grow there so I was able to have my head shaved while at MDA. Now when I wear my little caps, people understand that I do have cancer.

I was doing better and seeing results from my chemo when suddenly this past week my hands starting cracking so that I cannot turn the faucet on or off without it hurting badly (or open doors, unscrew lids) and my feet, though not cracked, hurt to have pressure on them (walking) and pulse in pain. After talking to a doctor at MDA, I discovered that this is a side effect of the Doxil. My doctor told me it would last during the entire time I will be doing chemo, however; Doxil’s official website said it should only last for two weeks and if not, I probably have to come off of it. I’m still swollen in my hands and face but lost all the fluid weight; I’m around 110 and wearing a size 4

Another interesting thing: Dr. Duvic has connected me with a group in Maryland who are doing experimental bone marrow transplants. The good news is they would look hard to find a 10 of 10 marker match at no cost; whereas, if Keith and I decided to do that, we would have to pay thousands for the search. The bad news is if we do it in Maryland, they do not pay for housing (about $15,000 for the three months). They are searching the same database that MD Anderson is so we are weighing our options on what will be most cost efficient. Please pray that God will make it obvious which route to take. Audra called earlier this week from the transplant center at MDA and said they still have no 10 of 10 matches for me in the bone marrow registry.

Did I mention earlier that I can’t see? My eyesight has been blurry off and on for several months. I finally got an appointment with the ophthalmologist at MDA. I have to admit Keith and I both agreed she was a nut. For instance, she was singing show tunes. She kept saying that she thought I had cataracts but we never could get a straight answer from her. Finally after three appointments, she said “I don’t know what the $#$# problem is. You’ve got cataracts.” Keith and I looked at each other wondering "what is she talking about?" Every appointment would result in “no problem with my cornea, retina, pupil, etc.” but my eyesight was rapidly declining at one point going from -9 to -13 in about six weeks. It was going to take a long time for me to get an appointment with Dr. Kim, the cataract expert at MDA so I saw my optometrist in Austin, and he didn’t think I should get cataract surgery because he said my eyes kept changing, and the cataract surgery wouldn’t help. I went and saw my Austin ophthalmologist; after taking a look in my right eye, he declared I was 100% clouded with cataracts. So I double checked with him about seeing if my eye would change and he had no qualms about it. So we scheduled the surgery for the week before Christmas. After the surgery, I apparently scratched my cornea making it difficult to heal. As of today, I still cannot see clearly out of my right eye. In order to help me to see at this point in time, I’m wearing a soft lens in my left eye and will get glasses for the right eye especially since my vision might change again. With this combination, I can see at distance but not close up so I can’t see my computer screen. You may be wondering how I’m putting this information into my blog. All kudos goes to Cathy Tucek. Okay, that’s most of medical stuff.

Car wrecks
You may remember that last September I was in a car wreck, was hit from behind by a gun-toting, beer guzzling, marijuana smoking young man who didn’t have his driver’s license with him; however, he had up to date coverage with Progressive. BTW, Progressive was wonderful; I’m now their exuberant spokesperson. Then my mom and I were driving back from Houston in her car in October when her back left tire dropped off the road (construction with non-level lanes). I know we did at least one 360 with my mom panicking and saying “we’re okay…we’re okay…we’re okay” over and over. We were close to a gas station and so we limped our way over there. There was a young man getting gas and I asked for his help. He was so helpful and he employed the help of another friend who was a mechanic. When they took the wheel off, they saw that the rod leading to the wheel from the chassis was bent at 90 degree angle. Obviously, God was on our side. After a quick call to my dad, he came and picked us up (we were in Elgin). I was also rear-ended again sometime that month. And then finally in November, I was driving to the store, blacked out, and hit a median, tearing up the transmission pan. On Christmas Eve on the way to my mother’s house, Keith was talking about all the accidents we had had (my mother and I), and was bragging how he hadn’t had one. 10-15 minutes later, BAM! We were hit from behind. We found out earlier this week that the mini-van was totaled. Fortunately, we are coming out about $3000 ahead.

My down time recommendations
I’d like to recommend Pillars of the Earth by Ken Follett about Masons building cathedrals in the 12th century. I listened to it on tape; 40 hours long (unabridged) and I could not turn it off. And then Keith and I recently saw a movie called Once. It’s a story of two musicians in Dublin who help each other at a critical time in their lives; the two starring role actors wrote all the music and lyrics. It’s a must see (for those of you sensitive to language, it’s salty).

And of course, I’m finally going to answer the question you’ve all been wondering about “Am I still itching?” YES!!!!! However, because it’s winter, and most places do not have the air conditioner blowing, I have not been freezing cold. In fact, our house is so well insulated I’ve been sleeping with the window cracked and with the fan on. Somehow not being cold has made my itching seem not such a pressing issue. But when I want to itch, I scratch since I know I’m going to anyway. Sorry Mom.

I hope this has satisfied the “all I ever wanted to know” bug. Keep praying!

Cathy insisted I put in when the prayer time for me is at Red River. It is the 3rd Saturday of the month from 6-8 p.m.