Staging...

August 22, 1987

I took off work and went for my CAT scan and chest x-ray. The CAT scan was not bad at all except for the "breathing exercises" where you have to hold your breath during the actual x-ray for a few seconds. The radiologist had to inject dye into my vein during the exam and I also had to drink Barium before the test. The whole thing took about 30 minutes. It was hard to lay still that long, and before we were done I had to go to the bathroom something awful.

Around noon I went to get my bone marrow done at Dr. Smith, the oncologist's office. I won't say it didn't hurt, but it wasn't too awful. The worst part was when he was injecting the numbing medicine down into the bone. It burns as it goes in but once it was numb, the rest wasn't too bad. It sure was a strange feeling though.

After the bone marrow, Dr. Smith told me the CAT scan showed "enlarged nodes around the aorta in my abdomen and pelvis" meaning stage III at least. This doesn't necessarily mean any worse prognosis, however.

One thing I noticed during these tests was that the doctors try to give me the VIP treatment. When I went to the office, I  didn't have to wait, and the surgeon even had me wait in his office and gave me a diet 7-up.

I called Dr. Smith and he said there were 20% lymphomatous cells in my bone marrow, therefore stage IV. He is going to talk to his collegues and and get back with us to map out a "life plan" or at least a "one year plan" so I can rearrange my schedule if need be.

A couple more things I must mention. It seems like everyone and their dog now knows about me and is terribly concerned about my health. If you ever want to be very popular and be talked about alot, get cancer at a young age. As the Pediatric oncologist Dr. Paul put it, "Bad news travels fast". I'm getting tired of having to tell people all about it, but I also feel strange when people don't bring it up, like they are avoiding it or they don't know. If they don't know, I feel like I'm hiding something if I don't tell them. I also noticed that I've been crying more about it the past few days. I haven't really been able to have a good cry yet, actually, because a friend of ours is staying with us and I haven't had much time alone. I espeically cry when people ask about having children. I guess it's because deep down I'm afraid I won't be able to, and I really want to have them. That bothers me more than the thought of chemo, etc. What bothers me most is that I feel robbed of my normal life. I feel like everything I do now will be harder, and will be weighed against how many years I have left or how it's going to affect my health.

Another thing Dr. Paul said was, "The best thing you can do for other people is to let them do you a favor". Almost everyone who talks to me asks if there's anything they can do. I know, people feel helpless and don't know what to do. When I asked one of the residents to take call for me the day after my surgery, she said okay, but I took call for her later in the month. A few days ago she called and said she wanted to go ahead and take the call that I had swithched. I tried to resist, but decided to take his advice and let her do it. I'm on call with her tonight and she sent me to bed early because I was tired. See, it's happening already.

My husband Jihad is also having difficulty right now. He has problems with ulcers and stomach upset. He is not eating well and has been very uptight, and I'm woried that his ulcers will flare again. He is getting angry at the Oncologist because he doesn't seem to be in a hurry to get anything done right away. I know he told me there was no urgency. But because it's stage IV, Jihad seems to think it needs to be dealt with right away. I know he's frustrated, but gee, it's me with the cancer, anyway, not him. I'm worried about him making himself sick over me. I hope he gets over this initial stage okay.

I hope that sooner or later things will settle back into some sort of routine where I don't have to think about the fact that I have cancer all the time. I wish I could get to where it was just routine and I didn't have to deal with people's pity anymore, and asking with a little more emphasis and a little more interest when they ask, "How are you doing?"

I'm so glad I have vacation after next week. I really do need a break so that Jihad and I can sit and talk for awhile and relax and enjoy ourselves. We also need to decide on what's next in the immediate future, and if nothing, then I want to try to get pregnant soon.