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."

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Wednesday, November 9, 2011

It's amazing how easily things are coming to me now. I can stay awake most days. I can pick up the house, do dishes, fold laundry, and make dinners some nights, but not all three in one day. I can dance and sing with X. I can make him and friends buffets of food. I can wake him up by jumping on the bed and screaming on the top of my lungs, something that would have left me in a cold sweat gasping for breath just last year. X remembers the days before the singing and dancing stopped, when I would wake him up in the morning by signing "xander, bander fo fander fe fi mo mander- Xander" and stealing his covers. I'm so happy to have these moments. I'm so happy he has memories of me! For so long I lived in fear that I'd leave my child motherless, without any memory of who I was. I'm still suspicious about how long this will keep up and if I'll continue to get better or if something will happen to set me back again. Getting better is almost scarier than the constant disease. Disappointment is worse than the status quo. Sometimes I lose my breath and think, "what if my lungs keep deteriorating?" The highest rate of death from lung disease is not from lung cancer or COPD in people my age. It's from lung fibrosis or scaring and I'm a poster child with the radiation I received and surgeries. I am really confused as to how to react to my PET scan news. My body feels better, but I'm highly suspicious of the cancer. It's a nasty cancer that comes back time after time. I haven't had three clear PET scans in a row in the past six years. I think it was 2007 when I had two in a row. I'm choosing to celebrate, of course, even if it's only for 3 months. This time last year I had a promising PET scan for the holidays too. I know I'm resigned to live life with a very real fear many don't understand, like a modern day Eve who bit the apple and now knows far too much about suffering. I'm not afraid my cancer will come back and kill me quickly. I fear more suffering. I'm scared of days I'm so tired even my teeth and skin hurt and there is no relief from morphine, benzos, bubble baths or any other place, when I just pray for relief from sleep. It's hard to believe, after almost six years, being told I'll never recover, that maybe I can get a life back. A life, not my life, not the one I thought I'd have but whoever gets that? I'll have an even better one, living fearlessly knowing that prayers and love have kept me here. I'm off to treatment kamikazi style tomorrow, leaving for the city at 6am, starting treatment at 11, hopefully out by 3 and home that night.
Sent from my Verizon Wireless BlackBerry

1 comment:

Anonymous said...

I am so happy that you are doing well. I am also happy that you are having glorious days with Xander. Here's praying for many, many, many more...