My agenda today had 4 things on it – I only took care of 2. One was with the Baltimore VA HUD/VASH caseworker (suitable/sustainable housing), and the other was my Business Employment Specialist, for placement in City, State, Federal, Government positions (sustainable/feasible). When I got here, I was only supposed to worry about getting a good treatment team and taking care of myself, so I could be around longer (haha). I missed my appointment with Dr. B at Johns Hopkins (poor-time management). I have over 13,000 miles on my 2016 Nissan now… I told Gina today, I do not want to think about cancer, I do not want to hear any more news one way or another. I feel good, so I am going with THAT. (she did not like my attitude at all, and said ‘pick up the phone and reschedule your appointment’) – I did, but I felt pretty hard-core for running my mouth like I didn’t care).
What kind of job do I even want to be doing? Can I commit to something without guarantee of an interruption due to health or personal complications? Should I just get the best job I can, and work my butt off for several years, sock away cash, and attempt to sustain that way? (missing out on life with the girls per usual when I work full-time) Do I trust Social Security to even be around for us if I pass away in the next 5-10 years or less? Will the legal system catch up to what happened with my family in time? Will Maryland put protections in place for the girls, if I am not here? These are legitimate fears, that supersede all others on some days. I would like to meet real life cancer survivors with these kind of thoughts… I made friends in the online MM Support groups, but I try not to go there often for anything other than treatment tips. Losing friends you never met in person can depress the most optimistic cancer survivors.
My education background is Fine Arts, Human Services & Graphic Design – all over the place… Taking stock of the records left behind from the last several decades… I was not-blissfully-unaware of myself. I can only say: I think I know where my strengths and weaknesses lie (if that helps). If you ask me what my dream has always been, or what my hope for the future is… it is easier to answer, but not related to ‘present day’ realities of life. Metaphorically, I was caught in a hurricane for 14 years, then a tornado took the last 4, and we were left standing in a wasteland. So I have been picking through the debris to see what is still usable, and what can be tossed, and what stuff is actually left over from a neighbors lawn that blew into my yard and I mistook it for my own… (make sense to anyone?).
A lifetime of not knowing my self, and no idea, until this year. Doing some hard work on reducing negative self-thought patterns, behavior defaults, and even my speech… This is difficult to quantify in words (although I attempt).
On one hand, I have this terminal cancer. Realization alone… from the day the doctor said “big C” , to seeing the X-Ray of the tumor… Now 4 years into 5-7 life expectancy… I feel better than I have in almost 20 years (physically), and even mentally (in important ways). However, as mentioned before, there is something that keeps disrupting our peace and our ability to feel free.
The animals seem to flock around me. Last time I was really sick it was like this… so I often wonder… hmmm they know something? I am suspect when l feel OK, as if I have no right to be pain free or healthy. The 40 lbs+ weight loss since October, and still dropping… Sitting still is hard for me… and I work out. I struggled with weight and stressors for the last decade. Now the nagging feeling… (MM monkey) …difficult thoughts to turn off. Missing todays appointment… subconscious maybe? I do not want acknowledging the MM now, or the other main life stressor. My brain cannot support another issue to ruminate on. I no longer want to see lab work results alerting me to something. Maybe it;s paranoia that the MM will pounce – as soon as something good happens for us.
I want to enjoy each day, I want to enjoy the girls, and the rest of life. I wonder what it would be like decide on a career path, or school program, and not wonder if the time and effort spent on achieving a goal- will not be wasted because I may crash and burn, right at the finish line. I so badly want to live and pretend the cancer is not a factor… I used to be a girl that wanted a life where she could help people for a living and just be happy with where that may have taken me. So much time is lost due to how much scrapping and surviving can never be returned. The more I try to ignore or process the source of the pain, to just live, the more obstacles present themselves connected to it. I am trying to cauterize the wounds, but it is not just mine that I have to worry about.
Completing my Social Work program will put me in a better position to help others & still financially support my family. However, if I spend the next couple of years studying, what happens if I get sick again? Volunteering (ideally if I did not have kids to support), this would be ok. What I do know is: being a Jack of All-Trades, and Master of None is not what I want to be anymore. I want to be mindful of this before I make any decision.
I survived, so now what? Survivors guilt? A chance to live semi-stress-free for a little while… not too much to ask. Do survivors struggle with the sense of loss or twilight-zone in-limbo feeling when dreaming of a better future? A modest self-sustaining life, a house, with a yard, and maybe my own workshop to create something… something to leave to my daughters. My desire is to leave a legacy they can be proud of… I hope God hears my prayers/thoughts.