Wow it has been a long time since I updated…
I joined a Cancer Support Group. I really really enjoy it. It is nice to know that the people you are talking to really get what you are feeling, because they are feeling it or have felt it too. I’m the youngest one in the group, but I look at that as a blessing because I caught my cancer early in my life 🙂
Emma was in ICU Tuesday and Wednesday of this week (ICU is standard anytime they admit her). She is fine now! I really hated being up there, especially since we are both Immune Suppressed (Emma because of her transplant, me because of chemo) so I pushed to get her home rather fiercely. They were just observing her for a fever, and her labs were wacky… I told the doctors that I can do everything they are doing with her, at home, and protect her (and me) from exposure. Once I spoke to the transplant cardiologist, he agreed. She has been fine since we came home, but a low grade fever of unknown origin sends her transplant team (and obviously her parents) into a frenzy! Once rejection was ruled out, we were on our way… It really took a lot out of me though, I cant imagine if something was really wrong, and I was really thankful that it didn’t happen while I was on chemo!
I haven’t been sleeping well (if at all). I usually wake up about 2am and cant go back to sleep until 6am. I can sleep on the couch, but wake up with a horrible back ache, so now I am taking three Extra Strength Tylenol and Benadryl before I go to sleep every night. We are going to switch mattress’ with my parents (they have a soft mattress in their extra bedroom which I can sleep well on). We just bought this mattress, it is Tempur-Pedic Memory Foam, but it is so very hard (and hot!). I will talk to my Oncologist about sleeping aids this next visit, because I could sleep fine before I was on Chemo.
My next MRI and oncology appointment is Oct 15th. Then I start chemo again on the 18th of October. I understand why they give you 23 days between… They are hoping you forget how horrible it is so you will take it again! They told me that the first two times would be the worst, and that it would be easier after that…. I am holding them to that, because it was unbelievable horrible the first two times. I am going to talk to them about some of my side effects on the 15th in hopes that they can offer suggestions on how to make it more bearable. I cant eat, sleep or function when I am on chemo, and it shouldnt be that bad. So those are things I will discuss with them.
I heard this song on the radio while driving with my dad. I hope you enjoy it, and really really listen to the words. If you can’t watch the video, please read the lyrics posted below.
Please do not take one moment for granted.. you just never know.
Point Of Grace â€“ How You Live
From the album How You Live
Wake up to the sunlight with your windows open
Don’t hold in your anger or leave things unspoken
Wear your red dress, use your good dishes
Make a big mess and make lots of wishes
And have what you want, but want what you have
And don’t spend your life looking back
Turn up the music
Turn it up loud
Take a few chances and let it all out
‘Cause you won’t regret it
Looking back from where you have been
‘Cause it’s not who you knew
And it’s not what you did
It’s how you live
So go to the ballgames and go to the ballet
And go see your folks more than just on the holidays
Kiss all your children, dance with your wife
Tell your husband you love him every night
Don’t run from the truth ’cause you can’t get away, no
Face it and you’ll be okay
Oh, wherever you are and wherever you’ve been
Now is the time to begin
So give to the needy, and pray for the grieving
Even when you don’t think that you can
‘Cause all that you do is bound to come back to you
So think of your fellow man
And make peace with God, and make peace with yourself
‘Cause in the end, there’s nobody else
Have a blessed weekend, and do something that you normally wouldnt dream of doing 😉