A Couple of Scares and a Setback

First off, let me thank Michael J. for stopping by City of Hope on Wednesday. I appreciated the flowers and also the spirited discussion of Che Guevara and the CIA. It was nice to think about something besides my health for a little while. Thank you also to Doris and Ralph for the fruit basket which included iced oatmeal cookies, my favorite. Thank you for remembering!

I've already told you that on Saturday I was able to shower for the first time. No sooner had I gotten out of the shower when Dr. Badie called and said, "Now I told you you could shower tomorrow, right?" I replied with, "No! You said Saturday and I already have!" I went on to explain that showering was a nerve-wracking experience, that it took every ounce of willpower I had to actually put my incision under the water. A whole host of what-ifs played through my mind. I really had to trust that Dr. Badie knew his stuff. But I did, he does, and said shower was completed.

On Sunday I showered again, having invited Mom and LeRoy over for Father's Day (thanks, Tracy, for the steaks!), believing that all would go as well as it had the day before. When I got out of the shower on Sunday, however, I touched the top of my head and heard a squishing sound. I kid you not! Squish! Squish! went my head right at the incision site! Oh! This didn't seem good at all! I imagined the worst, of course--shower water had gotten into the wound, a virulent infection was already sprouting its ugly head inside mine, and I would be hospitalized within hours, again!

When an hour later I heard it again, Steve insisted that I call the triage nurse at City of Hope. She was clearly quite taken aback--I'm not sure she had ever heard a brain surgery patient telling her that her brain was squishing--but she promised to call the doctor and call us right back. She did call back, within about five minutes, explaining that Dr. Badie had answered her page right away and that I shouldn't worry. It was only air! Apparently at surgery some air enters into the space between the bone and brain and between the scalp and the bone. This is quite normal, and I will hear all sorts of strange crunches and crackles and yes, squishes, for a few weeks at least. Bizarre!

On Monday morning, Dr. Badie called me himself to reassure me of all the nurse had said. Have I told you how much I love this surgeon? His personal attentiveness is amazing and very appreciated. Anyway, all appeared okay.

On Tuesday, however, as I was getting ready to walk the dog (just around our little block--don't worry!), I found that I had to repeat the same action twice to pick up the keys off the counter. Weird. Then, when I was attempting to put my wild, bushy (un-blow-dried) hair into the back of a Yankees cap, as I am not to go out in sunshine without a hat, I could hardly get my left hand to cooperate at all. When I looked down at it, I noticed that the first two fingers and the thumb were strangely contorted, and that I had no control at all over their movement. Bring the squishing back! This seemed worse!

So what did I do? I walked the dog, of course! I had already told her we were going, she had already done her leaping, pirouetting dance in preparation, and she's just so cute--I couldn't let her down. As I walked, however, I realized that although I gradually began to gain control over my fingers, my whole left hand was completely numb. After about fifteen minutes, the sensation came back and I seemed perfectly normal. Against Mom and Steve's advice, I did not call the nurse. I rationalized that I was fine, and promised that if it happened again, I would call.

Well, it did happen again, in the middle of the night, and still I did not call. This was not wise. I am having all sorts of pain in my right hand and arm, and I have decided to wait until I see Dr. Badie on Wednesday to ask about this, one reason being that my right hand is bothering me, and brain effects from surgery would most likely be seen on the left side, opposite of the tumor site. But now this was the left side!

I waited to call, in fact, until 4:30 Wednesday afternoon, after another episode, much scarier and more dramatic. It started in a way similar to the other two, with the fingers becoming a claw, unable to be moved by me. Then the numbness in the hand started, but this time it was followed by numbness in the toes, and then the foot and then the left leg. Then I began to feel numbness in the bones of my face, especially in the orbit around the left eye and in the jaw. When I looked in the mirror, there was an obvious droop on the left side, and when I smiled, only the right side responded. Spooky.

Only Zack was home with me, so I went into his bedroom to be sure he was seeing what I was seeing. I asked him about my smile, and he said, "talk normally." I told him that I was and he asked me to say something else. By this time, even I could hear that there was clearly something wrong with my speech, not a slurring exactly, but more a slowing. I was also having difficulty thinking of what I wanted to say and then actually saying it. When I asked Zack to describe what I sounded like, he said, "like a person who knows how to speak but isn't very good at it."

This whole episode lasted about twenty minutes. When I had regained normal speech, I called the nurse, and Dr. Badie called me back about two minutes later. He was very concerned and told me he was sure these occurrences were actually partial seizures, probably caused by the movement of the brain. You see, when the tumor was removed, it left a void that will eventually be replaced by brain tissue that is taking back its residence now that the invader has been vanquished. However, the brain responds to this movement as it does to any foreign activity--with increased electrical output, which causes seizures. Dr. Badie had me take a dose of Dilantin right away and asked that I up my nightly dose from three pills to four, 400 mg. In addition, he suggested that I would need to be on the Dilantin for much longer than originally planned, maybe as much as three months.

This is depressing. I was handling 300 mg of Dilantin quite well, with no perceivable effects, but adding 100 mg to the dose is like adding 1000. I can really tell the difference. I am more sleepy, more woozy, and much less steady on my feet. Suddenly, the doctor's precautions not to drive and not to go up or down stairs by myself make a lot of sense. In addition, being on the Dilantin is what has been keeping me from being able to drive, so now it is possible that I will not be driving again until well into September. And I already feel so housebound!

However, even in these circumstances, I can see huge positives--these seizures are relatively mild. I have warning of their arrival. I remain conscious. And although I am a little wiped out afterwards, I can still do the same things I was doing before Tuesday. What we do not want is for me to have a grand mal seizure, which would be devastating. It would be extremely scary for the kids, who would most likely be home with me, it would require hospital observation, and it would guarantee a loss of driving privileges for at least a year. So please continue to pray for me, that God's hand would be on me and also on Dr. Badie who will be working to find the right dose of Dilantin and/or other anti-epileptics. I need lots of patience, so pray for that, too. And pray for Steve and my children, especially for Zack who was a little freaked out on Wednesday and probably needs some reassurance.

God is faithful, and he will see through to completion the work he has started in me. Just a quick reminder from the old hymnal--this one's my favorite.

Great is thy faithfulness, O God my Father;
there is no shadow of turning with thee;
thou changest not, thy compassions, they fail not;
as thou hast been thou forever will be.

Great is thy faithfulness! Great is thy faithfulness!
Morning by morning new mercies I see;
all I have needed thy hand hath provided;
great is thy faithfulness, Lord, unto me!

Summer and winter and springtime and harvest,
sun, moon and stars in their courses above
join with all nature in manifold witness
to thy great faithfulness, mercy and love.

Pardon for sin and a peace that endureth
thy own dear presence to cheer and to guide;
strength for today and bright hope for tomorrow,
blessings all mine, with ten thousand beside!