Tuesday, May 14, 2013

black cloud

"dance as though no one is watching you, love as though you have never been hurt before, sing as though no one can hear you, live as though heaven is on earth."
on saturday barrett and i went to the melanoma symposium. tons of good information on staging for melanoma, some updates on research and treatments, nutrition (i pretty much already have all of that down - yay!), and a patient panel. the patient panel is my most favorite part. this year there were four patients that shared their stories, ranging from stage i to stage iv. there were tears, laughs, and all possible emotions in between.
i could relate to all of them in one way or another. with melanoma being common between us, i think that everyone in the room could relate to their story in some way. one woman talked about how after she had surgery, she was pretty much physically recovered and was at the grocery story. a woman she hadn't seen in awhile came up to her and said "ooooooooh, hooooooow are yoooooouuuu" in a slow tone with a really worried look on her face. the woman said that at first she was like "why are you talking to me like that? why do you look like something is wrong with me?" and then remembered to herself, oh yeah - she heard that i was just diagnosed with stage iii cancer. she said that it threw her for a loop because she was having a normal day and "didn't have cancer that day." she said that she felt like telling the lady "oh sorry, today isn't a cancer day for me, but thank you for the good thoughts." i know that feeling - it is so nice to have those days or moments where cancer isn't at the forefront and you get to forget for awhile about the black beast.
the last session was supposed to be about hope. something went terribly wrong. instead of the speaker focusing on hope, she talked about death. for 45 incredibly long minutes. she talked about many aspects of it, including the verbal and physical signs that someone who is dying will give their loved ones to let them know that they are preparing to die. i am not going to go into any more details than that for clearly obvious reasons. it was hands down one of the worst 45 minute periods of my entire life. i think that barrett and i were in shock. we were in the very middle of the auditorium, if we had left, we would have been a big disruption to everyone in the session. i don't think that i would have cared, but i was so in my internal thoughts (is this really happening? what were they thinking? how could they expect cancer patients to sit through this? why do things like this unexpectedly happen to me with no time for me to prepare? why does it feel like the cancer fates are punishing me, don't they know that coming to this is hard enough on me?) that i didn't move. it was the absolute worst way the day could have ended for us. the. worst. way. possible.
those 45 minutes have been a black cloud hanging low over me since. i cannot shake it. i have cried everyday since, combination of a holiday (which always throws me for a loop regardless of how hard i try for it to not do that) and those 45 minutes. as i told my mom through tears tonight, i am having a hard time this week. the specifics that the woman talked about on saturday i just cannot get out of my head.
i am not a big fan of surprises related to anything associated with my cancer. it makes me feel caught off guard and unprotected. when i know what is coming, i can brace myself for it. like on saturday, after the symposium, we went to a family party. i saw people that i haven't seen for a while and so there were some of the "wow, you don't have long hair anymore" and "you are looking good, last time i saw you things were pretty tough and you weren't feeling well", etc. (all good intentioned). i knew that those conversations were likely to happen, so i had prepared myself for them. the sneak attack on the death talk left me feeling vulnerable because my guard was down and i was already super emotional about being there in the first place. i hate being vulnerable. i really, really hate that and i really, really hate being put in that position. i think that they are clear on that from the notes i left on my evaluation of the symposium.
i am so thankful that tomorrow is my rest day. i need time to heal up and get my feet back under me. i have got to shake off this black cloud and move on. i need to dry up the tears and get some laughter back.
so that is the plan. rest and regroup. rest and regroup. take some much needed deep breaths. look forward, not backwards - i am not going that way after all.
onward. tomorrow is full of an entire day of great memories just waiting to be made.
can't let those black clouds take over the forecast any longer.
i predict sunshine the rest of the week around here, and i will be wearing my sunscreen of course;)
speaking of sunshine, chase had a great day today and here is the latest update:
+++ "I walked into the hospital room to a refreshing sight. Lisa sitting on the couch laughing with her dad and that beautiful smile of hers in full bloom. Chase lay resting peacefully on his bed, eyes closed, with a calm, serene look on his face. Immediately, I know it had been a good day! As mom filled me on the days events, she had the energy back in her voice I was hoping to hear! They had indeed had a good night and day as well. Chaser sleep soundly for a few hours, waking up breifly for 30 mins, then sleeping until 5:30- when a messy BM forced them both to get up and start the day. He has accomplished some more firsts today. He had hiccups most of the morning, and snorted out a number of sneezes. Mom was excited to hear some more "normalcy" break loose from those lips of his. In therapy he was fed some more chocolate pudding with a baby spoon, that he swallowed down 6 times- mom said these were much bigger and obvious swallows then she had witness previously in therapy. He stood up in the Stander during PT, although he slept through most of it, he tolerated being in that position quite well. The Therapist added the Toot and burp piano to Chasers apps on the Ipad used for thearpy. We will have to wait for a reaction on that one, but for the time being, mom is sure having fun playing it! Mom and Chaser spent a couple hours out in the garden absorbing the welcomed heat of summer. This evening he and I spent a little time out in the garden with a family friend that came to visit, and about 20 mins in the skyway working on Dads favorite therapy - DT. Chase tolerated his leg braces for most of the day, and has remained Storm free for almost 3 days! Mom and I have agreed to keep our sights on the positives, as little as they are some days, and give Chaser as much positive reinforcement that we can.....and then dig a little deeper, and give him more. I am looking forward to a good restful evening, as Chase and I lay here awaiting tubby time- watching a little Deadliest Catch together. Have a good night. :) God is Good!"
happy wednesday peeps, i hope that it is blue skies where you are too. be brave. xoxo

1 comment:

  1. blue skies here today. check. getting ready for sytennde mai. james and joann would love all of this norwegian craziness. hope your wednesday is filled with giggles and hope. the hope that should've been there in that conference session. oxoxox.