Hello, again.....hello.

At the time of my last post, I had just had enough with feeling like crap, it took a toll and I finally snapped. I thanks the good people at Mary's Place by the Sea- the cute house in Ocean Grove where I stayed for 2 nights to get my bearings back. It's been about 6 weeks and I feel great- It is amazing how much something like 2 nights away from home in a very quiet house can help.
It is an amazing place with an amazing spirit- I was really happy to be a part of it.
They focused on nutrition, reiki, massage, relaxation techniques and just quiet. Another woman was also staying at the same time I was. The odd coincidence she managed to be at a house 2 hours from her home, with someone who lived locally- and we both had the same oncologist. Her chemo days were Thursdays when mine were Mondays and Tuesdays! So it was really cool to be able to talk about what we were going through (she just beat triple negative breast cancer herself) , and relate to the doctors visits and the chemo nurses. It was such a great time. The house is run solely on donations, and they had just reopened since they had 6 feet of water in the basement from Sandy. They are lakefront as well as oceanfront.
I was in awe of how many people I met that got rid of their cancers with food and diet changes..... I could never do that, but it really opened my eyes to really how its neglected when you visit yuour oncologist. And all the stuff they don't tell you- like not to get a massage in the lymphedema affected arm, and other fun facts. I also learned jumping on a little trampoline helps lymphedema. Cool. whatever works.

About 2 weeks after I got back from mary's house, my  daughter Melody came down with a bizarre sickness that started as a low fever- then skyrocketed and landed herself in the ER- and in the hospital for 4 days and nobody could figure out what was wrong with her. I came very close to losing my child. It was a serious punch in the head to add to what we had all already been through- but all I know is that I have never been so scared in all my life. I prayed over my sick baby for 4 days watching her suffer andbe in pain and ovbody could help her. Eventually- it turned out that she was anemic, plus dehydrated, plus an ear infection, and the big one, which was a penumonia called mycoplasma IGM. Its a bad contagious pneumonia. It was frightening. I am glad that is past us and we can get on to healing- for everyone. Melody is back to her old self again.....

Which brings me to being done with the majority of treatments for a month and 25 days already. My hair is growing back and growing UP, which makes it such a pain to control. I look like a little boy on his first day of kindergarten if I can brush it wet. lol. It looks crazy, some days it looks fine. If I go out to a show, I put a wig on. a fun wig because this hair is awkward. I don't mind it though. Just venting. It is really nice to have my eyelashes and eyebrows back- and I have noticed from pictures even 3 months ago- my color is too- I looked like some shit right there for a while. wow. I still look like shit because sometimes someone will ask how I am feeling and then comment that I look tired.
I am tired.
I am slowwwwwly coming out of a very dense fog. I finally can say this past week I have been feeling a lot better overall- but I still have my days of pain. Or my arm will get bad, or I find a small fever. I have more good days than bad right now so I'll take what I can get.
This new life settles in to your head abruptly. Like your dropped on a distant planet and then just forced to make your way living a whole different way, from breathing to eating to thinking to socializing.
I cannot work anymore doing what I was. No lifting over 5 lbs, pushing , pulling or strenous activities with my right arm. at all. forever.
All those times I said I'd give my right arm for something and where are those things now? lol.
It ain't fun, and it certainly is not easy. I will never be the same.
My arm is especially screwed up adn I wound up needing to purchase a sleeve and gauntlet, whic basically is a big piece of fancy pantyhose you wear up your arm and on your hand to compress gently the lymph fluid away from your fingertips and back up the arm. GODSEND. I got a funky one with stars too. I love it.
It allowed me to work in the garden (one handed still), but without the strain and horrible pain a normal day would leave an unsleeved arm.
I dry brush and massage it and stretch it, but it will take a very long time to heal this.
Aches and pains.
I do not like them, and they visit me every day. And they are scary- because you think "Holy shit- is this cancer coming back?"
Dr. Cairoli told me when pain is constant and 24-7, to call them. Intermittent pain isn't necessary for alarm.
I'll get pains where the chemo needles went in, or bone pain residual from chemo, and there's a nerve ending that seemed to get caught in my healing stomach muscles that sends arrows through my side when I cough.
Fun.
This is every day.
I am very grateful to be unemployed - despite the fact I lost my health insurance. I am grateful I do not have to be bullied to going back to work in an environment hostile to my health anymore.
Things are progressing well though in that department. What goes around, comes around. Negligence will be addressed and brought to light.
Seems though that people are getting paid off and violations disappear, but it won't deter me. No way.
I am also grateful to have rediscovered the art I had put on the back burner stupidly for the past 5 years.

Fun side to life right now is that I was finally able to walk into my favorite tattoo parlor and sit back in that chair again. My tattoo artist had not known until about 3 days prior to me walking in, and he greeted me with a big hug and made sure that I would be coming back for more after he generously gifted me this latest piece. Great guy. It's on my left forearm (no tattoos allowed on lymphedema arm)- below the elbow.... love it. I will be going back for more, damnit. It definitely has a different feeling than a traditional sit, and healing is different- but the result of a fine piece of art being put on you forever is always the same. Happies!
Normalcy is slowly coming back.
Feeling and nerve endings are slowly coming back.
Life is slowly coming back.
Simple things like tattoo appointments and going to see Mark play for the first time since September are HUGE.
The benefit is also turning into something of a reunion of everyone I've veer known in my life converging under one roof--- I am seriously humbled, flabbergasted, overwhelmed and brought to tears from all this love.
It's extremely hard to accept it, but I was told to just shut up and enjoy it.
I am blessed.


xo



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