I slept like a rock after chemo last thursday.
And I slept most of the next day as well.
The chemo left me tired and drained.
But, no night sweats, no heartburn and best of all...
No evil steriods this time! yay!
My next chemo is 2/28/08,
next thursday.
Just pondering....Cancer vs NF2,
which one is worse? which better? They both suck!
Both can be devastating diseases.
However, the 'face' of Cancer is much more well known.
With Cancer I have found state of the art treatment centers, knowledgable nurses and doctors, caring staff, planned out management of my cancer,
and many different support systems.
With NF2, not so much.
Moving on up
6 years ago
4 comments:
So happy you don't have to do evil steroids this round. I'm also happy to learn that the cancer centers are so nice with helpful staff...must make a huge difference.
xo
You're doing well, KC. I like how you contrast your treatment with cancer vs. nf2. Very interesting,(although not fun) to see how ppl respond, etc.
You continue to amaze me. Go go go--you're doing it!
Much love and admiration from Molly
You Rock KC!!!
I admire you sooo much! Your strength thru this and NF2 just amaze me girl!
Never Give Up!!!
love you hun!
Paula
Totally! I think about that alot and have pondered it greatly since after my first treatment for NF2 (cyberknife) in 2004. Everyone has their own battles with cancer and I always considered mine pretty fortunate as I got the new drugs and was not as sick or bad off as I could have been. I have actually spent more time puking my guts out from NF2. I think though that people naturally assume the cancer was harder as like you said...very little is known about NF2.
All around the board (except for Harley who lives with me and can understand firsthand by seeing it) I would have to say I recieved a great deal more support when I was stricken with cancer. For many people they hear the word cancer and think that is the worst thing so everyone is jumping on the band wagon to acknowledge what is going on.
With NF2 it took many years for people to even so much as send me a card. It was a weird thing to go through. Cancer - everyone is there for you. NF2 - the attitude is like you have a cold or chronic asthma. I felt forgotten for a long time.
Same thing with the medical. When I was diagnosed with lymphoma action and steps were taken in a very urgent matter. Doctors were found for me and treatment. With NF2 it has been a hunt and lots of research over the years. One time I got really pissed. I saw this new guy who supposedly was a surgeon. (the dang captioner did not show up)
So the guy is flustered and tried talking to me. I am thinking to myself "I am completely deaf you damn idiot! Didn't you even bother to read my file?" When the guy finally wrote something down after my demands following his poor communication he informs me he has a deaf cousin. LOL Now what the hell does that have to do with the price of tea in China? Was he implying that he was "esperienced" with dealing with NF2 and deaf people although he did not know a lick of sign and it took my obvious frustration with his lack of communication skills before he would write anything? After making no connection with me he writes "You have NF2." LOL I am thinking "No shit sherlock! Gee it is only written in my file and I have been getting MRIs biannualy for the past 5 years!Do you think I am unaware of what I have?"
That would be like some doctor telling you that you have cancer after you have been getting treatments for months!
Anyhow, sorry to rant on. I finally have a whole medical team squared away but it took many years to get to that point.
I sure do hear ya about comparing the two! There are a few of us who have had NF2 and cancer. I wonder what they think about it.
I am very glad that your treatments are going great! The Leukemia and Lymphoma Society is a great organization for educating people, offering support, and for promoting and furthering research advances. It sounds like they have made some great strides in treatments since I have been there.
Just curious, why did you have to do steroids last time? Was it prednisone? I don't think I was on it because of the new cocktail I had.
As for NF2 (5 months post surgery), this is my last week on steroids (if I can handle being off). I have had some headaches and nausea as I have been tapering so I hope it is just temporary.
Have a fabulous week KC! I wish you well with your treatment this week!
Beck :o)
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