OK. Just got off of the phone with the oncologist and my Mitotaine level has not changed since last month =(
He is changing my dose from 10 pills/day to 15 pills/day.
Eek!
Pray my numbers go up this next month and that I don't go too crazy!
I think I need a chocolate fix...
good thing it's Easter weekend and chocolate consumption is a nearly guaranteed occurrence!
Friday, April 10, 2009
Happy Easter!
I hope everyone has wonderful Easter plans and a joyous time of celebration at church this weekend! It truly is a glorious holiday!
We have two Easter Egg hunts to choose from on Saturday and we will be attending Easter service Sunday morning.
Things for us have been kind of a roller coaster ride these last few weeks.
Eric has been traveling for work and I have been fighting with my meds! Still no results on my Mitotaine levels, but everything else came back looking good. It looks like my new dose of the florinef and prednisone is the double dose they put me on last week.
I am having a lot of 'normal' days -meaning tired, but basically functioning. And some that are WAY out of whack. It is kind of hard to plan for these things! One constant has been that the later in the day it is, or the more things on my 'to-do' list (such as doctor appointments), the more my fatigue, confusion, and dizziness is an issue.
My dear friend, Andrea, basically forced me to ask for (and receive) help. I know I need it - esp with Eric out of town - but it is SOOOOO hard to be on the side of need. But there have been a ton of red flags that I am not as OK as I think I am. For example, I was filling out a form for Emily at OT and where it asked for the name of who was completing the survey I wrote 'Darlene' (my mother's name) Hmmmm. I'm sure my family could give you a zillion examples, but truly my memory doesn't allow for me to give you very many =)
Anyway, Andrea set up a website where people can see what we need help with, such as rides or meals. I am trying to plan for help when I have an appointment that is further away or when I know my day is busier than normal and I am going to be a wreck by the afternoon. It has already been such a blessing.
A lot of this journey has been altering my expectations and only taking on a little bit every week rather than a 'conquer the world in one day' attitude.
The other HUGE blessing is that Emily finally qualified for respite care and we are able to have some help several afternoons a week. We have two people helping currently. One takes Emily to school and sometimes helps with bedtime routines. The other picks her up from school 2-3 days a week and helps with homework, encouraging Emily to keep her room picked up, and doing projects together.
It has been great!
This summer I will have even more hours of help -yea!
We have two Easter Egg hunts to choose from on Saturday and we will be attending Easter service Sunday morning.
Things for us have been kind of a roller coaster ride these last few weeks.
Eric has been traveling for work and I have been fighting with my meds! Still no results on my Mitotaine levels, but everything else came back looking good. It looks like my new dose of the florinef and prednisone is the double dose they put me on last week.
I am having a lot of 'normal' days -meaning tired, but basically functioning. And some that are WAY out of whack. It is kind of hard to plan for these things! One constant has been that the later in the day it is, or the more things on my 'to-do' list (such as doctor appointments), the more my fatigue, confusion, and dizziness is an issue.
My dear friend, Andrea, basically forced me to ask for (and receive) help. I know I need it - esp with Eric out of town - but it is SOOOOO hard to be on the side of need. But there have been a ton of red flags that I am not as OK as I think I am. For example, I was filling out a form for Emily at OT and where it asked for the name of who was completing the survey I wrote 'Darlene' (my mother's name) Hmmmm. I'm sure my family could give you a zillion examples, but truly my memory doesn't allow for me to give you very many =)
Anyway, Andrea set up a website where people can see what we need help with, such as rides or meals. I am trying to plan for help when I have an appointment that is further away or when I know my day is busier than normal and I am going to be a wreck by the afternoon. It has already been such a blessing.
A lot of this journey has been altering my expectations and only taking on a little bit every week rather than a 'conquer the world in one day' attitude.
The other HUGE blessing is that Emily finally qualified for respite care and we are able to have some help several afternoons a week. We have two people helping currently. One takes Emily to school and sometimes helps with bedtime routines. The other picks her up from school 2-3 days a week and helps with homework, encouraging Emily to keep her room picked up, and doing projects together.
It has been great!
This summer I will have even more hours of help -yea!
Thursday, April 2, 2009
Green Light!!!
Kind Of....
If I don't feel dizzy I can drive.
My fear is not feeling dizzy when I head out, but getting dizzy while I am out and about =)
We will be monitoring this closely. Basically the chemo eats up the prednisone and cortisone I'm on and apparently my chemo dose is winning this round. I will be on a double dose of my steroids until further notice. Not sure how that will change things, except that I am a little shaky now and then.
'Talk' to you all soon!
Triann
PS
Thank you to Belinda for driving 'duty' and Sheila for fulfilling my Ice Cream cravings. Thank you also to Laura, Andrea, and Heather for offers of help. I appreciate all of you wonderful ladies who are jumping in when things get rough! (and everyone else who I may not have mentioned)
If I don't feel dizzy I can drive.
My fear is not feeling dizzy when I head out, but getting dizzy while I am out and about =)
We will be monitoring this closely. Basically the chemo eats up the prednisone and cortisone I'm on and apparently my chemo dose is winning this round. I will be on a double dose of my steroids until further notice. Not sure how that will change things, except that I am a little shaky now and then.
'Talk' to you all soon!
Triann
PS
Thank you to Belinda for driving 'duty' and Sheila for fulfilling my Ice Cream cravings. Thank you also to Laura, Andrea, and Heather for offers of help. I appreciate all of you wonderful ladies who are jumping in when things get rough! (and everyone else who I may not have mentioned)
Update on the Driving Dilemma
I have cancelled a couple of appointments and have friends helping with the rest.
I feel SO much better now that the doctor has changed the dosage on some of my meds.
I think I am OK, but am waiting for the green light from my doctor to be independent again.
Thank you all for your prayers.
I feel SO much better now that the doctor has changed the dosage on some of my meds.
I think I am OK, but am waiting for the green light from my doctor to be independent again.
Thank you all for your prayers.
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