Chemopause 2

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