Emotional Roller Coaster Ride
So today has been an emotional roller coaster ride. You would expect me to be instantly elated when I heard the news that Jeanine's PET scan came back negative for Cancer and Possitive for grey matter ;-) But no, I started to panic... yup had me a mighty fine panic attack and am just coming down from it (after researching, listening to music, watching a movie about Meat Loaf the singer, and writing) about 6 hours later. Yup.. should have had me some xanax already... I never remember in time to avoid the after panic headache and cry head (even though I really didn't cry.. well OK.. I did my one eye cry I learned to do as a kid).
Anyhow, I re-read a bunch of messages from folks on our Merkel Cell Cancer Google Group. I wanted to make certain I was remembering advice correctly because I had myself convinced that PET scan die doesn't pick up MCC cells and she needs and MRI as well. Thankfully I found out that there was only one person who posted that their PET didn't pick up the MCC only the MRI did. In fact the PET is the Mama Jama of all tests recommended for this cancer and I totally faked my way through my arguement with the oncologist about the latest protocols for MCC stating they definitively state a PET should be done. Um.. they don't but he did it anyway. So... I think everything is OK. I think I ended up with what I was fighting for back in February. I can't really remember. Dang.. I'm starting to panic again. ugh!
Anyway, I thought I would share a post from a group member (and 5 year MCC survivor, Heather, a true angel here on earth) in response to my call for advice on how to advocate for Jeanine (Back on January 5th). It pretty much sums up how I'm fealing.
"My heart goes out to you at this time, Susan. In my opinion (as a
former patient), the job of a caregiver is even harder than that of the
person who has the disease. And now that you and Jeanine are rounding
the corner and finishing treatment, you are now getting the first taste
of "survivorship"... which for me was almost as difficult as the
treatment! Before you had everyone weighing in on "what to do" and
"how to fix it" (doctors, friends and family, etc)... everyone banded
together and was talking about "surviving" and "beating the cancer".
Now that treatment is over, doctors are like "Well, you're done! See
you later! Congratulations on surviving!" Friends and family are like,
"Congratulations! Now go out and live your life!" But how are YOU
supposed to switch gears? For months you have been immersed in the
"cancer culture", fighting every day, afraid of dying... and now the
cancer culture is done, and there's nothing to do to fight, and you
don't remember how to live without being afraid. Survivorship is much
harder than one would think!
Have either of you thought about finding a support group for survivors?
(The good thing about those support groups is that it doesn't matter
what kind of cancer they had, and you don't need to find one specific
to Merkel Cell...) That may help you to vent a little. Also, four
years after I finished treatment, I picked up Lance Armstrong's book
"It's Not About the Bike"... I thought it had a great chapter in it on
survivorship and the feeling of being "lost". Sometimes it just feels
good to know you're not the only one..."
OK... I'm crying now. Finally. Sorry if I made anyone else cry. Good news is crying makes room for feelings and expressing those feelings makes room for healing... OK now I'm counceling you... I'm off to bed.
Night all! Group Hugs & Kisses!
SueB :o)
Anyhow, I re-read a bunch of messages from folks on our Merkel Cell Cancer Google Group. I wanted to make certain I was remembering advice correctly because I had myself convinced that PET scan die doesn't pick up MCC cells and she needs and MRI as well. Thankfully I found out that there was only one person who posted that their PET didn't pick up the MCC only the MRI did. In fact the PET is the Mama Jama of all tests recommended for this cancer and I totally faked my way through my arguement with the oncologist about the latest protocols for MCC stating they definitively state a PET should be done. Um.. they don't but he did it anyway. So... I think everything is OK. I think I ended up with what I was fighting for back in February. I can't really remember. Dang.. I'm starting to panic again. ugh!
Anyway, I thought I would share a post from a group member (and 5 year MCC survivor, Heather, a true angel here on earth) in response to my call for advice on how to advocate for Jeanine (Back on January 5th). It pretty much sums up how I'm fealing.
"My heart goes out to you at this time, Susan. In my opinion (as a
former patient), the job of a caregiver is even harder than that of the
person who has the disease. And now that you and Jeanine are rounding
the corner and finishing treatment, you are now getting the first taste
of "survivorship"... which for me was almost as difficult as the
treatment! Before you had everyone weighing in on "what to do" and
"how to fix it" (doctors, friends and family, etc)... everyone banded
together and was talking about "surviving" and "beating the cancer".
Now that treatment is over, doctors are like "Well, you're done! See
you later! Congratulations on surviving!" Friends and family are like,
"Congratulations! Now go out and live your life!" But how are YOU
supposed to switch gears? For months you have been immersed in the
"cancer culture", fighting every day, afraid of dying... and now the
cancer culture is done, and there's nothing to do to fight, and you
don't remember how to live without being afraid. Survivorship is much
harder than one would think!
Have either of you thought about finding a support group for survivors?
(The good thing about those support groups is that it doesn't matter
what kind of cancer they had, and you don't need to find one specific
to Merkel Cell...) That may help you to vent a little. Also, four
years after I finished treatment, I picked up Lance Armstrong's book
"It's Not About the Bike"... I thought it had a great chapter in it on
survivorship and the feeling of being "lost". Sometimes it just feels
good to know you're not the only one..."
OK... I'm crying now. Finally. Sorry if I made anyone else cry. Good news is crying makes room for feelings and expressing those feelings makes room for healing... OK now I'm counceling you... I'm off to bed.
Night all! Group Hugs & Kisses!
SueB :o)