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."
Saturday, October 4, 2008
My New Digs
It’s day two, or day -5, however you want to look at it. Let the pain begin.
I’m trying to get accustomed to my surroundings and cope with how my body will be feeling. My room varies from cold to boiling. I haven’t quite figured out the thermostat middle ground. My nurse last evening said there isn’t one. I’ll work it out. I have my robe.
I have a Boston size bathroom, which I suppose is better than a NY size bathroom. I could sit on the toilet and brush my teeth at the same time, but that just sounds unsanitary.
My room is a little. . . sterile , but I’ll get used to it. My guests have to don face masks and gloves to visit. I’ll have to wear them also if I venture outside my room, and then I’m only allowed to walk within the pod, a 600 ft circle.
I can hear a patient in the room next door moaning and crying. Is that going to be me anytime soon?
And so goes the loss of my remaining independence down the tubes. I now have to ask permission to take my medications. I need assistance with covering my lines to shower. Most importantly, and most difficult, I need to trust whoever is taking care of me knows what they are doing.
Don’t get me wrong, I love the nurses. Everyone so far has been incredibly friendly. The PA was good. I’m told my doctor is a genius.
I think a little wariness regarding who is now controlling the outcome of your life is normal, no matter how competent you believe they are. I always prescribed to the school of thought that if I wanted something done right, I would have to do it myself, but I can’t do this myself. I can’t prescribe my own medications and start my own lines. Soon, I may not be able to walk on my own.
I can’t even be Miss Independent who depends on no one for support. I’m not that person anymore, and I like who I am now. I’m glad I’m letting my trust issues go. The love, support, and positive reinforcement I’ve received by making these changes is astounding. It amazes me how much good can come into your life once you welcome it openly.
The world is not bad. In fact, it’s more peaceful than almost any other time in history. Eighty percent of violence takes place in Iraq and Afghanistan. Our minds perceive the world as a dangerous place since images of violence and tragedy are at our fingertips twenty-four seven. After Sep. 11, it was theorized that the repeated images of the falling towers resulted in post traumatic stress for the viewers at home, not only the people who were present.
So stop watching the news people. Watch me instead. Let me tell you all the bad and good things about being in my position.
Dana Farber has valet and a concierge desk. I was just joking when I told people I was going on vacation, but the hospital is working it out and making my stay as vacation-like as possible. The food is good, and when the kitchen picks up, they say “room service.” I can order whatever I want, whenever I want.
I think this will be my son’s favorite feature. He loves hotels and room service. This will also be good for me. Hopefully, I’ll pack back on the five pounds I dropped last week.
The bathroom does leave something to be desired. If I was paying over $1250 a night on the outside, I’d want something a little more luxurious. When I went to shower this morning, some disgruntled housekeeper had cleaned the shower and positioned the head to spray Andre the giant, not mini Hillary. I turned the handle, thinking I was safe, and the water hit me, a straight shot to the face! Who knew figuring out the shower would be such an adventure.
I no longer have to clean or do laundry. I don’t have to cook. All I have to do is concentrate on healing, but believe it or not, I’ll miss these tasks.
I’m glad I picked up my computer again. I need a purpose. Darwin said “evolve or die.” With most of humanities threats gone, aside from cancer and ourselves, I’m going to think Darwin meant mentally. Evolve mentally, keep your purpose. Make yourself useful. This gives me something to concentrate on when my body starts to fail. I need to know I have something left to contribute to society, that I have a purpose to live, that I’m not just taking up space. Without this drive, I think I may have died a long time ago.