Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
Monday, July 6, 2009
i woke up....
I woke up this morning. I consider that a pretty good start to my day. Do not confuse waking up with being awake. . I have a very specific routine in the morning to assure most possible side effects of my cancer and treatment remain at bay during the day. . I am having a summer of comfort care. I have been insinuating this for a while without saying it. My cancer isn't gone, but I have life to live. I want to live it now, but the mornings are a painful reminder of the reality that despite all attempts to ease the hurt, to keep the infections away, and to even spontaneously regress my tumors may all just be that, attempts, I'll deal with that when I am done having fun. . I am camping now in a location I am not going to share with anybody. The family has been coming here for years to enjoy the peaceful serenity of the lake, beach, campfire, bbqs, ghost stories. This year everybody else seems to have discovered this gem nestled at the base of a gorgeous hikable Mountain and a quick drive from, not only civilization, but outlet shopping. . It looks like a lot of people agree with the decision to vacation here that my grandparents made forty-two years ago. Since that time go karts and mini golf have popped up across the street along with diners, indian jewelry shops and a local artisans store. . In this past year alone, the park must have received some sort of grant, a "yacht club" boat house popped up as did a new refined office, a store complete with pizza and hot dogs for beach goers and a brand new state of the art playground. . That's all I have seen in my first twelve hours here. I have yet to check the showers. I am crossing my fingers hoping those got the bulk of the update. I hate when you think you have gotten as clean as possible in a dirty shower only to have a grimy slimy mold infested plastic curtain blow at you right before your quarter or the heat goes out. . Ugh. . I am living the life this year. I finally found a "mom's helper." Scratch that, the perfect mom's helper, to join us and assist me with x and lex. . Liz is a lifetime family friend (I remember when she was born). Her family have been lifelong family friends. She actually camped with us here when I was twelve and she was five, though we both barely remember. . We spent many summer vacations together camping in maine. I dare say she has been adequetely interviewed and screened. She's all ready a great help. . She also joined in the family fun yesterday, my mom bought x a child size kayak so she could go out with the kids on the lake. It was both x and lex's first time out on a lake, but unbeknownst to us, liz wanted in on the action and she hopped out there to get the basic lesson from nana and pepere. . Before I was even functioning this morning, due to a debaucle with my contacts (I packed for three people in 4 hours for two weeks, there must be some kind of award in the guiness book of world records for that). I forgot my lense cleanser and decided last night that the best course of action to save the contact without risking an eye infection was to spit in the container. . I know this was okay in college and it beats using tapwater, but times have changed a lot in the past five years. . I wasn't about to have spitty eyes all day, but I also couldn't stand the burning, gritty pain, photophobia and irritation the graft vs host disease would curse me with if I didn't use the contacts. . My contacts are technically part of my medications. They are not only for sight, but to alleviate pain and dryness. They are called accuvue oasys and I love them. I also take flax seed for moisture and cleanse the lense with optifresh. . Then life is good. I can see. It's a small inconvenience to pay to enjoy my family. . I do remember days in high school when my hair just wouldn't cooperate and my contacts wouldn't get in my eye and I left feeling like I should break down and cry because the forthcoming day would definately suck. I would eminate anger and irritation to all around me, trying to dampen their day. After a certain point, there was no saving what may have been a perfectly fine time. I had allowed myself to be disrailed in spirit from a few simple moments. . My fight for health has also waged war on my spirit and my sanity. I am lucky to have discovered exactly what I can control, barriers to fix what I would like to control will send me into a tizzy, but they are far different experiences than those times in high school. I am fortunate to have found this place, no matter what it took to get me here.