03 November 2008

Medical update 11- 03

Sometimes it seems like we spend lots of times waiting with this disease and sometimes there are flurries of activity where I have to run around like a chicken with its head cut off in order to keep up. We're now in one of those flurries.

1. My counts were down. I knew this because my gums were bleeding this morning. I asked for type and cross when they did the CBC, so I only had one of those sticks today. And sure enough, I had to get a platelet transfusion. For my meditation I used the DEC exercise from TMI and never even felt that stick. And luckily had no reaction to the platelets. Supposedly it doesn't matter what type blood you are with platelet transfusions, but I have only had reactions when the platelets came from an A positive person, never from O positive.

2. The doc wanted to start me on Dacogen today. As Dacogen is more toxic than Vidaza he wanted me to know it could crash my counts even more. I'm wondering how I can get much lower than 0.0. Zero seems pretty damn low to me. I will have to be "watched more closely" with the Dacogen. That means I get more frequent blood tests, transfusions, etc. and am seen by the doc more often. More blood tests and transfusions means more sticking with those nasty needles. WHOA. Let's talk.

3. Port-o-Cath. This is the solution to avoid all these sticks. I have an appointment with the surgeon tomorrow afternoon to have our preliminary meeting and set up the surgery. My doc wants it done ASAP - as in this week.

4. I go back to see my doc on Wednesday (have another blood test, including type and cross). On the surgery day I will have to get 2 to 3 units of platelets in the morning and have the port put in that afternoon. It will likely happen Thursday if we can get in that quickly. Also I have to get 2 units of packed red cells this week.

5. Provided all goes well and I get the port this week, I will start on Dacogen Monday 10 November. I will need lots of good healing vibes with this treatment. Not just for what happens with the treatments, but if these don't work, my options are getting narrowed. But I am thinking positively!

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JudiRedhead said...

Becky, I am sending super sonic healing vibes your way, sistah!
LOVE your attitude! I will gather the sisters, you have no IDEA how powerful the glitter sisters can BEA!

Flassie's Fil'a said...

Lifting You Up in Prayer Becky!

God Bless You and Yours and Your Health!!!

flowermom said...

Lots of healing prayers coming your way!((((Hugs Becky!!)))))

Hilary said...

Major cyber healing thoughts and prayers sent your way Becky!

Keep up the positive mental attitude and keep the faith!

violette said...

sending you many healing prayers........your positivity is wonderful! Bless you!

Love, Violette (aka a glitter sister!)

ANg said...

Holding you close and lifting you UP to the universe and calling upon the universe to provide strength and healing.

Simon C. said...

Hi Becky. You don't know me. I found your blog because of a Google search I have set up for the word Vidaza. I almost feel like I know you as we're about the same age and both have MDS (actually mine has turned into AML now). Also, I'm trying Vidaza right now. Anyway, if you feel like talking to someone in a similar medical situation, please contact me.
I'm at simon.chaitowitz@gmail.com. My blog is: http://schaitowitz.blogspot.com/
I love your deco plates. I have a few Fiesta pieces myself!

Sharon (junefour) said...


The port a cath takes a few minutes to place, it is so much easier on you to have one. I will continue to keep you in my prayers for better counts, tolerance to the meds given to you and I am so proud of your attitude. That is such an important part of getting through all this.

Hang in there and know that you are being prayed for by many.