Chemopause 2
Chem-o-pause (noun/adjective)
Source of
word: Made up by Rebecca Mayer
Definition: 1. The pause in chemo that happens when
you are in Remission
Pause-temporary inaction especially as caused
by uncertainty
Hi All,
It’s been a long time since I updated my
blog. I’ve had so much to say, but like a caterpillar, I’ve kind of cocooned my
thoughts and myself from a lot of things and people. Sometimes I feel that the
holding back on how I feel physically, or what I truly feel or think, helps to
cocoon others in a safe place, away from the realities of what it’s like to be
me. Don’t get me wrong, I will always be forthright and truthful; sometimes
it’s just easier to tell people what they ‘want’ to hear. So with all that having
been said, here goes J…
As of
August 10, 2013, I have been in Chemopause (see above definition) for:
24 months
105
weeks
731
days
17,661
hours
1,059,677
minutes
63,580,625
seconds
LOL, in case you are wondering…no I did not become a Math
Genius from all that freaking chemo! There is a great site I use for people’s
birthdays, it’s a lot of fun/cool facts, check it out, plug your birthday in: http://www.paulsadowski.com/Birthday.asp
For now there is nobody jabbing needles into my chest, or
shooting me up with bone marrow booster shots,drawing blood nonstop or making
me so sick I can’t move off the couch. I am untouched for the most part,
although I still go for a lot of tests and blood work etc. I’m still living on
meds, but they are not making me sick; the meds help with the neuropathy
(hands/feet-long term chemo side effects). Meds for pain, nerve damage, bone
pain etc, some pretty heavy duty stuff, but I use it mainly at night, so I am
not a daytime zombie. Muscle relaxers for when the damaged muscles ball up, and
other meds to cut down anxiety and help me sleep- nights are the worst for me,
my brain thinks too much. Pills, pills and more pills, I feel like Alice in Wonderland
and I hear Grace Slick singing in my head. I still have my “inappropriately
happy’ pills too, but I just hang on to them and smile when I see them in the
fridge. J
My body is tired and I really wish I had my old body
back….I want to go kick some ass and break a speed bag in the gym like I used
to, maybe someday I will do that again.
I lost 2 more friends in the past few months. Ronny, an
older man I met at Radiation died in March. We talked all the time. He also had
Lung Cancer, but a different type, his produced tumors near his throat,
eventually paralyzing his vocal cords and taking his voice, and he had tumors
that spread through his chest. He was a veteran and just one of the nicest
people I have met! I’m glad he was part of my life and I hold him in my heart
and see him in the white butterflies that visit. (my grandmother told me that
white butterflies are loved ones who are gone, that visit you)
I lost my friend Hank 2 weeks ago. He also had Lung
Cancer, also a different form than mine. His journey was very rough, having
suffered a heart attack and a stroke during a procedure. He bounced back pretty
well for what he had gone through. He had trouble with chemo, but bounced back
again. I jokingly referred to him as my friend the Jack in the Box. Treatment
eventually started taking a toll on him; the nonstop chemo can be deadly when
your body is so beat up. I have seen it happen before, I saw it happen again.
I did have the chance to go and sit and talk and hold
hands with both of my friends before they died. It was comforting for all of
us. It still makes me very sad. But I’m grateful for the friendships that we
had and they will be with me in spirit as I continue on my journey.
I was due for my 4 month Pet Scan in May, but it didn’t happen.
We live in a world where people have to fight every day for their rights,
medical care, equality, marriage, family, jobs etc. We also live in a world
where insurance companies are making life altering and life threatening
decisions for us, without our consent. A world where a Cancer patient can’t get
necessary testing done. My insurance company – Aetna- refused to pre-certify my
Pet Scan, stating that I have been out of treatment for over 6 months and they
deemed it “preventative and not needed”. (words to that effect) My oncologist
who fought with them once before and got
approval for another test, pretty much threw her hands in the air this time and
didn’t go to bat for me. She said insurance companies have changed the rules
and I need to accept that. I am not happy about this at all, especially since
my oncologist has been tracking the changes in my bilateral axillary lymph
nodes in my armpit areas. How are you supposed to keep tracking them without
the Pet Scan?? I was sent for a Cat Scan
without dye (I’ve become allergic to the dye), it was a waste of time and
money, it was like getting a very expensive Upper GI. And unfortunately will
not show the lymph nodes without the dye. So I sit in limbo land once again. It’s
very frustrating. If I had the money I would pay cash for the Pet Scan, I bet
the hospital would love that! Pet Scans
are very expensive. ARRGGHH!
I hope that I continue to stay in Remission. So send some
positive thoughts my way J
J In
HAPPY NEWS:
My son, Michael past his Drivers Permit test last week
and is doing great practicing with me in the car! He also got his Senior
Portraits done for school and is looking at colleges. (sniff)
My daughter Rachel was on vacation last week with her
boyfriend of almost 8 years. She came home on Saturday night with the most
beautiful engagement ring!! My little girl is engaged and I couldn’t be happier
for her!! They plan to get married in September of 2015. (sniff again)I love my kids!
I’ve got a yard full of grapes, tons this year! And butterflies
and hummingbirds are everywhere in the yard! My special hummingbird that has
been visiting me for the past few summers still comes right up to my face and
chirps at me. It’s so freaking cool!
My final thoughts are for those who are living with Cancer,
I know it’s hard, I know we sometimes put on the “happy’ face when we get a
picture taken or see people and try to make everyone else feel ok. I have
rarely let anyone see the ‘real’ pictures of Cancer that I have taken of
myself, and I have taken a lot of those pictures. Just make sure that you take
care of yourselves! And remember that you are loved.
Peaceful wishes & Love
Rebecca