I didn't realize I hadn't posted anything since the BMB. Long story short, it confirmed the CML diagnoses, and I'm Ph+ [Chromosome # 22, the "Philadelphia chromosome" has some sort of mutation, which is pretty standard for this type of leukemia]. Been doing the whole hematology/oncology run from one doctor to another thing for the past 6 months, so they can keep track of my WBC [white blood cell], hemaglobin, platelet, and other blood counts. This is both to see how well the medicine is fighting the CML, and how much damage it is doing to other things in the process.

I've been taking Gleevec, the so-called orange miracle pill since then. I was all excited when I first read about it, because so many people had a quick major response to it. So far, I'm not one of those people. My WBC count has gone down a little, but I haven't had the drastic results that a lot of people reported, even after upping the dosage. My Dr. suggested trying a newer drug called Nilotinib [AMN107] if we don't see results, or if my WBC count goes back up. The only problem is it's still in trials now, and I'd be ineligible for it unless I went on birth control. I'm already 24, and my husband will be 34 soon, so I don't want to start taking anything that will require me to be on long-term BC [it's strongly reccomended for those on Gleevec, but my Dr. is just doing a pregnancy test every time I come in for blood work, and I'll have to stop it if I get pregnant].

Oh yeah, I've missed a total of 9 days of work now this year, and my boss is being a real jerk about it. [I was in the hospital 3 of those days, and brought notes for the others as well - 5 of them were wehen I was first dx'ed, because the Dr. pulled me out of work for a week just to be safe until she found out what I had]. I have another BMB on the 25th, and will be returning to work on the 27th, so I don't have to ask for any days off. Hopefully, I won't be as sore as I was last time. He's all like "well, if you're sick that much, you don't need to be working in a position where people depend on you". He'd have a point, if he hadn't just given one officer a full month off to be home with his wife, because she had surgery, and another 2 weeks of for mental health leave because he was "stressed out".

Anyway, enough for ranting and posting for now. Been dsoing ok, just annoyed that everything's so uncertain still and that I'm not seeing positive results any faster. Still, I've only been "really sick" a handful of days, and the worst effects of the meds are a few hours of nausea in the mornings when I take them, so I guess I'm one of the lucky ones, just not feeling it right now. My husband's handling things OK, I guess - he just refuses to talk about anything or acknowledge that I may get worse or need to cut back time at work depending on how things progress.

Well, I had the bone marrow biopsy on Wednesday morning, but still haven't gotten any results back. I had a few people warn me it was going to hurt, but I wasn't really concerned because I have a pretty high pain tolerance. It hurt, badly, and I was probably sort of stupid for going on in to work on Friday night. My hip is still a little tender, but at least it's tolerable now. I wanted to go camping next weekend, but Billy saw me gimping around last week, so he's worried about my still being sore and overdoing it - guess I'm grounded, then.

I told my mom that it actually is leukemia they're testing for. Really, she asked, and I admitted it. I should've figured the "high white cell count" thing wasn't going to fly for very long - that woman is addicted to WebMD. She probably has more info on CML than I do at this point, but still keeps calling and asking me questions. I think everyone's finally got the point that I don't want to talk about my health every time I see them or get a phone call, so at least that's slacked off some.

I spent about 2 weeks sort of staying away from everybody and letting things sink in. OH, really I was pouting and being bitchy to everybody, but I get defensive and moody when I'm sick or discouraged or scared, and I've been all three. I didn't even go to church or anything for about 2 weeks cause I didn't want to face people, and I didn't want to be there when I could harldy pray or read the Bible without being angry at God and thinking how unfair my life was. I think I finally snapped out of that, for now.

I've talked to my mom & dad a little more, and to Billy. Both had been doing research on CML on their own, and I get it that they're concerned and worried too, not being nosy, and that I've been sort of selfish by not taking into account how they feel about all this. I also went back to church, and Billy told the preacher & a friend of ours what was going on with me. He asked if he could have the church pray for us, and I said OK. Also found out that a friend of ours at church had leukemia before we met him, and was cured. He went through chemo, but says he wouldn't do it again, so he understands why I'm so set against radiation or a marrow transplant at this point. Sunday helped me put things into perspective - I have so many people who really do care about me, and so much support available from my friends and family, and from God, and I've been pushing it all away instead of admitting that I can use some help, too.

I'm just not used to this - I'm usually the one who does the supporting and holds everyone together. I don't cry, I don't show weakness, and I don't ask for or accept help. I've already cried this week, in front of people, for the first time in years, and that scares me. I'm a lot more comfortable just dealing with things on my own, keeping a smile on my face, and never amditting that anything might be wrong.

I went out to dinner with my husband, Billy, last night - I had to pay because he didn't have any cash, but we needed some time together, We were rushed because he worked overtime, then I had to go in and work all night, but at least we had about 2 hours together. I've been wanting to spend more time with him, but I feel like it's even more important now. His boss, Jimmy, did tell him that he'd try to arrange for him not to have to work overtime on weekends when I'm off, so we can see eachother. Jimmy said he'd have given him the day off yesterday if he'd have known, so we coulkd be together after I found out - he lost his daughter to leukemia, so he knws what it's like to have a loved one sick and not be able to be with them. It scares me a little, hearing about someone else who died of cancer - it is just so common here.

I started this journal because I was diagnosed with cancer, and I'd like a place to write about it without linking it to my normal journal. It's just not something I want everyone freaking out over, and I don't plan to tell most of my friends, family, or coworkers unless things get really bad and it becomes necessary. I prefer to deal things myself, because I usually end up being the one caring for everyone else and helping them deal emotionally, and I just don't need that right now.

To sum things up, I got some sort of viral infection a couple months ago, and my doctor ran a bunch of tests. My gums were swollen & bleeding, and I had a very high fever, then a low fever for over a week, and aches and muscle pain, but I tested negative for flu & mono. She figured it was just some sort of bad viral infection, butdid bloodwork just in case. It came back with a really high white blood cell count & also an elevated platelet count. She called me back in for more bloodwork, and to discuss some things in my medical history, and she told me that several things could cause it, but she needed to run more tests, and one of the things that might be causing it is leukemia, a form of cancer that affects your blood.

We talked about symptoms and things, and several of them sounded like me, so I had kind of accepted that I might have it, and started doing some research online, before I got the results back. I don't have any family history of cancer, and don't think I've been exposed to benzene or radiation, so who knows how I got it [there was a chemical plant explosion near our house, but it was probably too recent to be related to this]. Symptoms I'd already been showing, but never thought much of, include fatigue & tiredness, getting out of breath easily, weakness, a recurring low fever, bruising easily, bone/joint pain, and occassional bouts of night sweats. I chalked most've these up to working too much, and not eating very well, and to a past history of depression [which made me feel tired, achy, and weak].

Yesterday, I went back to my doctor and she told me I tested positive for CML, which is chronic myelogenous [or myeloid] leukemia, which is a cancer in my blood where my body makes a whole bunch of white blood cells that don't work. The only official "cure" is from a bone marrow transplant, but they have had good luck treating it with medication in many people. They will be doing a bone marrow biopsy in a couple weeks, to be sure, and to see what phase I'm in [how serious], but it doesn't sound as bad as it did at first. The word "leukemia" is scary as hell, makes me think of those little kids with no hair.

I told my dad my diagnosis yesterday evening, and he seemed to take it ok, but I can tell he's worried cause he offered to take off work and drive across state to come see him. I told him I was fine, and it was nothing major and could be treated with meds. So, yeah, he thinks I have a "minor form of cancer" - as long as he doesn't do any research of look up recovery rates for CML, that should float. We agreed not to use the words "cancer" or "leukemia" around my mom, because she will freak out, and he said he'd tell her I had a "high white cell count" and it was just a blood problem that could be treated with meds. I feel bad, cause it's not really truthful, and I'm downplaying it a lot with them, but there's nothing they can do, and they don't need to be upset right now over this. Mom called today wanting to know what it was, what kinds of meds I was gonna be on, what "low white cells" means, what kind of Dr. I'm seeing, etc. Had to dodge a little bit, she's the type of person who looks everything up on WebMD, and thinks that gives her all the answers, and I really don't want her prying into this. I also don't want people pressuring me to have a blood marrow transplant or do chemotherapy - I've seen too many people go through chemo, and I just refuse to do it until I've exhausted all other means.

I stayed up all day yesterday, and meant to tell my husband last night, but fell asleep. I ended up telling him this morning before he went to work. He was upset, but they wouldn't let him take a sick day or personal day because the girl who works with him was out for a doctor's appointment today. He seemed to take things OK - I had told him they suspected this, but just dropped it until I found out for sure. He listened more than I thought, because he said he had been looking into it and thinking about what to do. I wish we could spend some time together - I've been saying that for months, but I really need him now. I've felt so alone the past few weeks, and with my working nights and both of us on overtime, we never see eachother anymore. He said he'd be home early today, but he's running late again.

I'm just rambling now, so I'll wind up the post. I've got to go for the bone marrow biopsy, to find out more. I also need to choose an oncologist and decide which hospital I will be treated at. I also need to check with the insurance company, to see if they will cover the medication, because Dr. C says there's been trouble with that in the past. My insurance sucks, so they probably won't. I also need to "decide" whether or not to get tested for a bone marrow match, but I've already decided not to - I just really, really, do not want to go through chemo, and they use siblings which I don't have [I have a half sister, but we have different blood types & ethnic makeups, so I doubt that'd work]. I thought getting some answers would make me feel better, but it's now. I feel more helpless and annoyed than scared right now - I just want to know what to do to start getting better.