I’m done eating my strawberries, mangoes, and kiwis. I’ve gotten the cucumbers, green beans, and salads from the Farmer’s Market out of my system. I’ve had my Burdick’s coffee and been out to eat at Loui Loui’s for lobster ravioli. I’ve said peace out to my partying ways until 2009. I’m now looking forward to my second re-birthday.
I did miss the New Kids concert with Maggie this past week, and I wasn’t able to go out in B-town on Thursday night. I wanted to do both prior to climbing into my bubble, but I do have responsibilities. Just a little warning, so you all know, once I am out of isolation, it will be on. I’ll have some energy that will need to be worked out, and if you don’t know what happens when that time comes, use your imagination.
Right now, I am grouchy. I’m going to keep how I feel edited, but I don’t even want to hang out with myself. My parents took my suggestion to go check into the hotel. If my parents can’t take me, no one can.
My throat hurts. I’m filled with tubes again, an intravenous line in my right hand and a hickman line (tunneled central catheter to my heart) on the left side of my chest. I’m wired for sound. I shouldn’t even need to connect to the wireless network for the internet.
I’m a little scared. I don’t know anyone, personally, who has survived a bone marrow transplant. I certainly don’t know anyone who has survived two. I called a previous patient my doctor recommended to hear her perspective. She was very positive. She is a survivor. I was surprised how reassuring it was to speak with someone who had been where I am now. I always disregarded the support group idea. My recommendation: don’t knock it until you try it. When I grow up, I’m going to be like her.
My friend Liz from college called too yesterday. She’s a special breed: 5’8”, 110 lbs., manhattanite. The type of mythological breed I didn’t believe existed until I met her. She’s the woman who wants to be a trophy wife and is gorgeous enough to have a full time job of keeping her hand in her man’s wallet. If you have to ask if you’re rich enough to afford her, you’re not. I don’t always understand her, but she amuses me. She took time out of her busy schedule of being a gorgeous, suburban newly-wed (to a “golf pro”) to call me. She’s a survivor of non-Hodgkin’s lymphoma.
She reminded me that this will end. She told me she thought her disease would go on forever, but her life has gone on, and so will mine.
October 9, 2008 is day 0. This sounds ominous, but I’ll have a brand new designer immune system imported from Europe just for me. No freezing. No preservatives. It’s coming straight to me. This will be my second re-birthday and third birthday. No woman needs three birthdays a year, unless you are sending presents, but really, how old will this make me?
The plan, today’s plan, is that I will be discharged on Oct. 10 (Day 1), and return day 3,4,6,7, & 11. I’m confused. I was told I’d be held until day 6. I’d made my hotel reservations accordingly. Then, the PA asks me if I’ve talked to a woman I’ve never heard of to coordinate my care. How can I talk to her if I don’t know who she is?
No wonder I’m so confused, if I can’t figure out how to coordinate this system, who can? I called everybody I know. I think we all know that if I want to be seen and heard, you can’t miss me.
There is no cause for worry. It won’t solve anything. Now that I’m on B&G’s radar, I’ll connect with the right people. Everything will be just fine. It always has been. Someone big is looking out for me. I hope my parents and family feel the same.
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."