All mine: 3 kidney transplants, a pancreas transplant, 27 years of type 1 diabetes, 4 plus years of metastasizing cancer, a broken leg, elbow, wrist, both feet, hands, skull and ribs (yes I might be accident prone from time to time,) plus all the secondary illnesses that waltz along with these problems (osteoporosis, Gastroparesis, cataracts, chronic facial swelling (also known as moon face - see photo,) gall bladder failure, impacted bowel, chronic bleeding, etc...)
I have survived over 40 years of ill health. Sickness does not dominate my life. And okay, this is about my health, but it is also about yours. I have learned to live a life of chronic patienthood where I am not dominated by illness. I have managed to focus on goals that have nothing to do with illness. Living life for me is learning to surf above the uneven terrain of my health.
I had chemo Tuesday. Again. I’ve lost track of the months I’ve been on, but I started 7 drugs and two years ago after two years of surgery and radiation. And it IS a drag! So, to divert myself from the on-coming nausea and tiredness, I started this blog today.
I hope this blog will help others who are living with chronic illness, to laugh. Also, if you are already a friend, this will keep you updated on my health. Most, my wish is to help other patients realize hope and gain knowledge through shared experiences. (No one wants to, or should have to, deal with chronic illness on their own.)
Today’s word: GEMCITABINE, my current chemo drug. Don't ask me to say it, please. Pronouncing it would be difficult for an intact person and, as it is, I have only half a functioning tongue. 2 weeks on and one week off. Side effects: nausea, puffy skin, and fatigue. And fatigue. It seems to slow down the cancer, (metastasized squamous cell carcinoma that started in my rear tongue and spread to my lymph nodes and then (now) to the sub layers of my skin on my neck and chest. It hasn't stopped me.
I get up each morning and remind myself that I’m going to be swollen, tired and nauseous. So if I get something done, like epoxy the hatches of the kayak I’m building, it’s a great day!! Or if I get through all my (liquid) food, it’s a great day! Or if one of our cats comes up to say hello, rub itself on my leg and settle down for a nap near me…yep: great day!
Today is a great day! Thanks for reading.
Thank you so much for this wonderful gift that you're giving. You are, without a doubt, the most highly evolved person I know. Here is wishing you many, many great days. I'll be reading.
ReplyDeleteLove,
Stacey
One way that Brian manages to surf above the waves of his sickness is through humour. Sorry, humor (wrong side of the Atlantic). The days we travelled together to the Westchester Medical Center for tests, and then re-tests after the tests said that I was already dead (visions of becoming a non-person as in Catch 22 haunted me so we had to re-do everything) were greatly enhanced by two things: Brian's humour ('Where are we John? I thought you knew? No of course not, I just had my dialysis!); and the waitress at the local diner. Almost as hot as Diane.
ReplyDeleteIt is unbelievable how Brian manages to retain his sense of the ridiculous in the face of terrible adversity. Brian we all salute you. Get better.
Love
John
great day for me too. I found you through this blog. Cheers, keep writing. :-)
ReplyDeletehugs,
pallavi.
Read the NYT piece - well written and thoughtful. Remarkable how we so often define ourselves on deep, fundamental terms, but behave superficially until someone or something calls us out. Thanks for writing.
ReplyDeleteOh, Brian, I just read the NYTimes piece and was so deeply moved. we humans are obsessed with our looks (few more than me...well, more than a few) and so vulnerable to hurt from others. Your piece put me in touch with my own fear of judgment and rejection, painful memories (and I'm quite "normal" looking, so most of this is just about that terribly human need for acceptance.) I am angry on your behalf that you have moonface (which I never heard of before); in the picture it looks like you can't see. I have lately had swollen tissue around my eyes, from allergies and eye-rubbing and my eyes look a little more like slits than they did. So I'm wondering if this damnable swelling is impairing your vision.
ReplyDeleteSorry about not being relentlessly cheerful, but I'm angry! But glad you're a survivor. May the worst illnesses be in your past. May you enjoy pleasure every day!! May we all....
I just read the article in the NYTimes and you are amazing and wonderful and I wish you were my friend. Thank you for sharing your story.
ReplyDeleteI am raising a child with severe disabilities (brain damaged @ birth) and she is a happy child who loves life and I am always reminding the doctors who have helped her through various life threatening crises of this wonderful fact.
I look forward to following you on your blog.
Jody
If one waits long enough in a relationship, other people get beyond the facial features. I had facial surgery years back to correct damage from a fall; 25+ years' later I'm still sensitive to the way I look, but nerve damage continues to heal (!) and it's nice to have poorly-sighted astigmatic friends who perceive one as a nice blur. My little Scottish Fold cat is non-judgmental; another plus for living with an animal. Her name, by the way, is "Dangerous Daisy Macgregor, Queen of the Highland Robber Clans." Like you, I'm a Macgregor, and I assume you understand the "robber" reference! All the best to you.
ReplyDeleteKatherine
Dear Mr. Nelson,
ReplyDeleteYou are a gem! Please come to visit me with Mrs. Nelson and your eight pairs of whiskers. It will be a pleasure to offer you cups of tea, pink martinis and cream. A kilt is indeed appropriate attire and I shall greet you at the door with mine, a bright snappy affair, and we shall all proceed to share lots of purrs and laughter. With appreciation for the big smile.
Brian, I'm wondering: after chemo, is there any hope that your moon face will abate? Or is this a permanent condition?
ReplyDeleteBrian, I admire your wit, strength, humour and your writing. You're an inspiration. I hope that your worst days are behind you and that your health improves. Your positive attitude is a gift, and it takes great strength to hang on to it.
ReplyDeleteI lost my only son recently due to diabetic complications and I have some 2nd hand appreciation of what you must go through with all the surgeries. Humour and courage gets us through.
I wish you good health and continued enjoyment of the things that truly matter.
Thank you for such a beautifully written story.
My best regards,
Marion Robertson
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