My life so far...

Antibiotics that stink; Realization: I have cancer; Healing; Retirement!

These are just a few things that have transpired in my life in the last 2 months!

Antibiotics that stink:
First, I got an infection (imagine that... that makes about 15 since last Thanksgiving). The normal antibiotic I was taking should have taken care of the infection, but, alas I got this wild infection anyway. Funny thing when I went to my appt. at MD Anderson I actually prayed that the drs. would find something when they swabbed my body (they use a cue tip looking thing on a very long stick). Well my prayers were answered! So the dr. prescribed a new very potent antibiotic called Zyvox. Let me tell you a few side affects of this wonder drug:

Nausea - yep had that
Change your vision - yes... to the tune of $200.00 for new glasses
Itching - well OF COURSE!
Acute state of confusion - well sort of... ok I know many of you will dispute me on that!

I used the drug for 14 days and it was the most awful 2 weeks I can think of ... I was so miserable. Of course I was miserable since about December ... I think because of the infection.

Good news... as soon as I finished the meds I felt better!

Realization: I have cancer
Because of the infection, my numbers (my CD4s [bad t-cells] and my CD8s [good t-cells] went the wrong way. So Keith and I are sitting in a small examining room, with Dr Duvic, the 3 fellows and Carol, the drug study coordinator. Dr. Duvic suddenly swivels on her little stool and looks me right in the eye and says "Your numbers don't look good, so you need to make a decision on what you want to do." So Keith and I asked what are our options? Carol and Dr. Duvic start throwing out all sort of options. We both sat there with our mouths open. Finally I asked if they could e-mail us all the options they were throwing at us. No, but they could fax them to us. So later in the week, Keith and I get 47 pages of faxed pages. The faxed pages only contained 4 drug studies Dr. Duvic is involved with. It didn't have any information on options like: Total Body Radiation to get rid of these awful bumps I have all over my legs or other ideas that did not include some bizarre drug study!

So Keith and I took off the day and poured over these 47 pages of faxes. We also searched the web for other options for the curing or just easing of symptoms for those with mycosis fungoides and sezary cell syndrome. As I looked at and listened to Keith reading from various web pages I got more and more depressed. I finally realized this is a cancer that is going to be a great battle. I think I always thought I could handled this... it wouldn't be so bad... I'll get better soon...

Then all those thoughts were dashed under the weight of the realization that I have a rare and basically incurable cancer. (This is not to negate the fact that God can heal me!!)

Healing
A friend had called me earlier the week before all this happened. Keith kept reminding me to call her back. So I called her that night and she told me her and husband had been praying for me. Suddenly, Isaiah 58:11 came to her. And she knew that verse was just for me. Here is the verse:

The LORD will guide you always; He will satisfy your needs in a sun-scorched land
and will strengthen your frame. You will be like a well-watered garden,
like a spring whose waters never fail.

As I meditated on this verse I felt the Lord say that He is not taking me out of the sun-scored land (remember with this cancer my skin is very dry!), however He will be there with me and he will strengthen my bones (or frame). And I will be like a well-watered garden. And when people see this I will say it is the Lord who is satisfying my needs in this dry and scorched land!

As I came before the Lord, empty and depleted He met me in a amazing way. I realized the next day that the bumps on my legs had gone down considerably. I tried wearing "real" clothes rather than my pj's and I could actually stand the material on my legs and thighs. Not for all day but for most of the day! And each day my legs seem to be getting better and better! And, yes, for all of you who are asking... "How is the itching?" It comes and goes. Some days I hardly feel itching at all and other days I go crazy itching. But, I think I've got it figured out. I seem to itch more often when I get dressed really fast! There is something about clothes pressing against skin that is soaked in lotion that has not yet be absorbed that causes uncontrollable itching... so I wait about an hour before I put on ... well ok, you get the idea!

Retirement
Probably as many of you know as you who don't... but I applied for early retirement disability. Because I have 16 years and 2 months, I'm vested (which means my insurance is paid for by the state for the rest of my life!) Because I'm retiring so early, I'm not getting much in the way of monthly stipend, but fortunately it is enough to totally pay for the Keith and the kids insurance. This is a real blessing. As I discovered sleeping late every morning has done wonders for my thought process and how I feel. I realize I really need to take care of my body to promote healing and trying to work 40 hours or even 30 wasn't cutting it. I would come home each evening and go straight to bed. And then I would stay in bed all day Saturday. Thus, the reason why I've been so lax in keeping up this blog!

But back to my retirement... I applied back in December. We (the royal we) set my retirement for 2/28/07. Well, needless to say, the state agency I'm under took forever to fill out the paperwork. I don't even remember when they finally got it ... maybe end of February. Well I would check every week or so to see where we were in the process. My case worker told me that I had been approved by the medical board and commented it was the fastest approval she had ever seen! From there it had to go somewhere (I was never sure of that step), then it went to the attorneys and finally had to be signed by the director of ERS (employment retirement system). So here I am, March 19th and wondering where are we in the process... So yesterday I called my case worker but before she could call me back, Keith called and said the approval and a stack of papers had come in the mail! My new retirement date is now March 31! Yes as of this moment I only have 7 more days of work! I have such mixed feelings... on the one hand I'll miss everyone terribly, on the other hand I'm so tired I'll think I'll probably sleep the first 2 weeks of April!

P.S. My appt. this week with Dr. Duvic showed that my blood work was much better. Here are the results: my CD4 cells were 4106 on 2/21 and were 3572 on 3/6 (this is good... you want your CD4 cells to be between 205 and 1451) And my CD4/CD8 ration went from 120.25 on 2/21 to 107.67 on 3/6. Again you want them to be between 0.20 and 4.40. Got a ways to go on that end! However, I'm staying on the BCX1777 until further notice. Dr. Duvic said I could stop anytime I felt it wasn't working! However, I hope she would take me off this study drug if she felt it wasn't working, eh???

Well, I think that is enough information for tonight! Time to do my wraps.