The Waiting Game

Since my last post, all I've really done is wait. Lots of questions, no answers. So much swimming thru my head.

First, let me just say, this last chemo was soooo different from the first one. The first one, Cytarabine, I got for 24 hours, several days in a row (7 days the first round then 1 day less each of the other 3 times). My hair completely fell out all at once. Chemo week I felt good, the week after was the bad week. I slept for the first 2 days after I got home from the hospital and would literally detox. The rest of the week was rocky but the third week I would start feeling better and I would feel continuously better each day after. This was consistent. I knew what to expect. THIS time...there has been no consistency. Chemo was a couple of hours every day for 5 days. I felt okay that week but not great. I have felt continually worse every day after and I'm in my 5th week. Granted it's pollen season and tho I have never had allergies, I have been experiencing mild symptoms for the last few years. Is that why I'm not shaking this? I have no idea. I'm off all meds and have been for 3 days. The nausea is still there (seems to be letting up a little in the last couple of days) the heartburn is still there (seems to be letting up a little in the last couple of days) the fatigue simply will not go away. I sit. That's about it. I just sit. If any of you know me at all you know this is VERY hard for me. I'm not a sitter. I'm a doer. My hair is taking it's time coming out tho it consistently falls out. I shaved it but there are still all these itchy little coarse hairs that fall out and drive me nuts! I've had a PICC line in continuously for going on 5 weeks which makes showering an adventure. It's so tightly wrapped in Saran wrap that it should be fresh until next Thursday!

Everyone keeps asking me...what's next? when do you go to Vandy? Will you go to Vandy? What will it be like? When are you going to Seattle? (for a second opinion cuz they are tops in the country and I DO intend to go before the transplant) Have you found out if your insurance will cover the trip? Let me just say. I have no idea about anything. I'm having a hard time just getting my case manager to answer the simple question of are wigs covered. I give up. Beth said she had a personal assistant handle all her "stuff" when she was chemo brained. If I lived in a perfect world...

If you haven't noticed, this chemo has zapped the positive attitude right out of me. I'm tired. I have no idea what's going to happen to me next. There's no "plan". Yes, I'm suppose to get some answers tomorrow when I see Dr. Weeks (for the first time in 2 weeks). I have been asking Peggy and all she can say is, "Honey, I'm not privy to that information", but no one sets me up to see him. I almost feel like it's being avoided. Like he's breaking up with me and everyone knows it but me. And now, it's here. Tomorrow is the big day. Now I'm not sure I want to know. Normally I write down tons of questions when I know I'm going to see THE MAN. This time I can't make myself think about it long enough to think of the questions. Maybe it's me doing the avoiding. I haven't really pressed the idea of meeting with him. I know, one way or another, after tomorrow, I'll feel better. Just knowing. Fear of the unknown and fear of knowing is such a conflict. I keep reminding myself that there are SO many people out there that have it so much worse than I do, but I just can't seem to snap out of this...whatever it is. This one has been very emotional.

I'm not going to even get started on the medical expenses. Okay maybe a little. I thought I had last years all paid off only to find out I still owed the hospital $2 grand. Then we started all over again this year. My husband has a very good job (Thank God!). We have very good insurance as well (Thank God again!) But the medical bills still pile up. How do people get sick like this with no job much less insurance??? They lose their homes and everything they own that's how!!! I shouldn't complain. But I still do.

What a downer post. It's making me feel even worse so I either have to change the subject or get outta here. Problem is, these days all I am is this. I live, eat and breathe Leukemia. It's all I know. It's all I am.

I love you all!