Thursday, February 7, 2008

I went down, down, down...


...And The Flames Went Higher
  • As we approach Valentine's day that quote could mean anything. Alas, it ain't so. I chose that quote because my PCR results are down (which is good), but my fever is up (100).

  • My PCR number is 3.5 and not the 0.000000 I had hoped. My previous PCR number was 35+, so I thought a 3.5 sounded pretty good. Then the PA said, "well a one log (one decimal place) reduction is the margin of error in this test." So, that means I may not have had any reduction at all if the test is just wacky. It's all about the trends or movements in the tests. I have a bone marrow biopsy/aspiration and PCR in three weeks. We will know more when those results come back.

  • The other blood markers are good. Thank you dark green veggies and vitamins.

  • During the past week I have been very sick to my stomach in the middle of the night. The side effect is odd since I don't think I had it during the first go round with chemo. However, the acupuncture seems to be helping with the nausea and fatigue. Now I need something to knock out the fever again. Blech. I am tired of being tired.

  • I am grateful for the medicines and the support. I am just not loving the isolation that comes with being so tired. Some days I can do what the 'unsick' folks do, but then I pay for it the next day when I can't do anything. I want to go out and do things so I can be with people. When I'm out, I don't want to look sick or be sick. The kickback comes when I am useless later from being overtired. Cancer sucks. I think I will choose not to have it.

  • In other news, I spent the morning on the phone with the insurance company going over outstanding bills (about $30,000 worth). I have been approved for the bone marrow transplant per the insurance comapny anyway. They agreed to reiew all the 'not approved' charges and get back to me. So far it's good news and I will take it as a win for today (knock wood).

  • There are lots of good things happening. We received some great cards, emails and donations. We are cleaning out the closets, scrubbing down the house, and getting rid of tons of stuff. I want to feel good about coming home and having a peaceful space for me and Lili. As long as there are so many things that need to be done/fixed/repaired, I feel torn as to what to do next. Most of the time I just finish making dinner and go to bed. I am better, but I feel like I'm missing out on the life I really wanted. More on that topic later.

Don't forget to 'speak out' and leave a comment!

5 comments:

Anonymous said...

Hi Sweet Rhonda,

Andie and I enjoyed our visit with you, Lili and Jimmie so much! I apologize for not writing until now to tell, no excuse other than the busyness of life.

You are one of my heros! I admire you so much. And not only the positive energy you are using and sharing for what you are going through now but for the ministry and love you have shared in the past. I think of Power House and ministry you have provided yourself at MD Anderson. If it were not so serious it would be almost odd that now you yourself are receiving ministry. I only hope and pray that you are getting as good as you have always given.

I seriously meant it when I told you I am just a little over an hour away. I want to be here for you and Lili. If I can do ANYTHING to help, please DO NOT hesitate to ask. Now, I know it is hard to ask sometimes but that is foolishness and I want you to put that kind of thinking aside.

At last I have signed up for the Emails so hopefully now I can keep been updated as to what is happening with your treatments.

You are on our prayer list at Church and I am praying for you. I don't know that I have ever figured out (no need to) how or why prayers work but they do help.

I will do my best to get by when I am in the Houston area. At this time I do not have a date there but that changes all the time.

Hang in there little sis, you are loved!

Joanne

Anonymous said...

Hey sis,I think I am losing some weight,You have changed the way I eat and I think it is showing,I know I am feeling better and I have more energy.I haven't had meat since you made me that all veggie meal at you house two weeks ago.I'll keep going as long as you do,I'll stick it out with and together we will show them all.I promise to take better care of myself so I can help others,just remember you are special and you have so many that love you,and I'm so proud to have a sister like you,so strong,so loving,and beautiful.Love ya Big Bro #1 Dan

LiLi said...

Hey Madre.
So yeahhhh....i aM SORRy that you have to go trought out this. but i am sure that at the end it will all be good! bacause then you will have alot of energy and do more more more fun stuff with me! and others too of course. but just dont loose your sense of humor...hahha. yeah. so keep doing what you do. and know that i am always doing my best. and also know that i am thankful for everything you do for me...(if that means silently yelling) haha. well looking forward to many of your blogs!
love always
LiLi

debbiedoesraw said...

Hi Rhonda,
Focus on the good stuff, focus on the good stuff, focus on the good stuff etc, etc etc...even when all the bad stuff seems to be a much bigger pile of poo!
Thanks for your wonderful comments and help you gave Dancer.. she is needing support as are you.
I am fortunate that I have not had any meds.. my goal is to never have to.
Have a great Sunday
deb

Mike Jacques said...

Hello Rhonda,

Great blog. I can say been there done that. I am going on my third year with CML. The treatment works even though it sucks. My PCR was .0015 four months ago, and I am waiting my most recent results.

The constant pain eases after a while. I think it is more that you just get sick of paying attention to it more than anything.

Something that may give you a chuckle are a couple of the shirts I made up. You can see them at www.cafepress.com/8232. I especially like the Philadelphia shirt. You will know what I mean when you see it.

Keep your chin up...there are silver linings to every cloud, you just got to find them.

Take care,
Mike J
Glendale AZ