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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Saturday, January 21, 2012

Treatmennt/ Physical Update

Ugh, housing is just something new to research again. With med travel anywhere, transportation and housing is the most daunting and stressful. How am I going to get there? Who is going to drive and what will we do when we get there? How much will gas cost? Can I afford it? Will they be able to care for me among so many? The options are limitless but limiting. First, I always find a point of making a hospital employee assist, sometimes in writing by email. This could be the nurse, a msw, a housing liasion or a volunteer you're lucky to have found. At least this person has an official title. Its them I ask about tried and true methods: are there hotel endowments? Is there an opening somewhere like Hope Lodge? Where do I park and how much is that? Do u think these options will be available when I'm on study? I always try to think ahead. I prepare for the worst and hope for the best. Meanwhile, I have the sounds of bank registers ching chinging in the background of my mind while reality sets in. Will I stay night to night in whatever is cheapest on hotwire like a hobo? Will I make an arrangement with a good college friend and take over the in-lawsuite that I'll furnish? Do I stay in manhattan or West Chester County? Either way, any decision, this is started when I don't even have a therapeutic schedule. I put God in charge and try not to cope with the stress. Stress is immunocompromising, who knew? I guess we'll see the travel involved then. I'll be in NYC the 24th. I'm lucky I have experience of living and choosing these places previously for fun. I can't say relocation. Traveling/moving during the worst feelings of your life makes it almost impossilbe. Whatever the problem is: My bowel is still inflamed. Packing, above and beyond the travel, you need a pharmacopious amount of meds. I'm on 60mg pred with 9 mg enterocort and taking immodium around the clock, which limits me to 1 or 2 watery stools, or none if I stick to a strict diet: no sugar or carbs. I'm getting hydration 3x weekly finally. At home, which should limit my passing out. Keep a list of your current medications wth you always. At the top have your primary and srcondary diagnosis and any health history to go with it. After that, have all your allergies in red large block print and pay. This small amount of organization. On top of this, Im having my right kidney stent replaced tomorrow. Urology, and I, feel its clogged or compromised. Being on treatment "hiatus" we scheduled. Revlomid comes in today soo. I'm cleared but do not plan to take it until speaking with Dr. O on Tues. I'm hoping to heal and go to trial if possible. My GVHD specialist said revlomid is known to make GVHD worse. Look forward to seeing you. If there's anything you need, let me know. Hill
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