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."

Get a playlist! Standalone player Get Ringtones

Wednesday, December 28, 2011

Coming back

I could feel myself slipping away. I knew I was grasping at life, but I'd become so tired. I couldn't think straight. I wasn't sad. I wasn't angry. And I was sick, so sick trying to find anyway to get better. Its been a long time since I felt so bad. Feeling sick and fading away started almost simultaneously. I collapsed and had to leave my son's bball game. That was weeks ago. I should have known then, but I'd prepared myself to stay healthy like never before: I eat oranges and airborne, have a good diet. None of that changes if my body fails. I think I got sick first, a uti from my stent and a virus, then I needed blood but thought I needed fluids instead. I'd call looking for help but nobody would order blood tests, anything beyond what I requested. I've never seen this. I've never diluted myself with water, getting sicker, when I needed a transfusion. But no orders?! Maybe its Project lean. I'm being rationed, with insurance. I just didn't feel like I have a leader guiding my entire body here. I felt like I was guiding way too much, especially with being so sick. I need a GVHD specialist that will force me to take prednisone to recover, the only thing that brought me back. The adrenals went with the stress of the illness and suddenly, over night, I was sleeping. I couldn't do anything. Then, to make sure I was done for, my graft vs. Host rages in my colon. I've never had gvhd of the bowel. It is evil and miserable. I wouldn't wish it on Hitler. I couldn't cough or vomit or wretch in pain without running to the bathroom. I had taken a colonoscopy prep that produced nothing, but still refused high dose steroids. Thank goodness for all the loved ones and support I have. My dad and grandparents drove me down to NYC in a day, which made a huge difference. Dr. O got the ball rolling with a mini cancerlebrity doctor hissy fit when he couldn't officially order the treatment he wanted me to have (I would have loved to see the big one). He wanted to fire my heme team and hire a new one, which he essentially did. Dr G and A were out that day. O was being told I may have to wait until Jan 3 to get revlomid ordered, which according to A, is more difficult to get than pounds of oxycode, and takes weeks once the application is started. Luckily, Dr. Lansignan and Moody, the Drs O got ahold of, both of whom are very good, had the paperwork moving. With checks and initials in three black boxes provided by the FDA where I swear that I will not become pregnant, ever. I will not even think about having sex without protection during treatment even though I've been menopausal since 2006. That form didn't care that I'd swear off sex for treatment, as long as I didn't even think of babies. Why? Because revlomid started out as the 80s disaster thalidomide, which was originally prescribed for nausea in pregnant woman, but caused severe birth defects: new appendages, flippers, etc. It was a medical disaster, in pregnant women, but there are a lot of disasters in pregnant women that patients like me will gobble up. I think I can start next week. Thankfully, where I thought this was going, the details of what it feels like to slowly fade, what its like when your body is passing away, is not where it went. My steroids are kicking in. In bed, in illness all I could do was worry about the family, especially the kids involved. I could listen to X playing with his friends. I hated not being able to get up and cater to them: say hi, bring out the food and drinks, make sure they have everything even though they can get it themselves. It's a mom thing. All while sick before xmas I was upset I couldn't make x's favorite holiday cookies. Again, thank goodness for mom. I'm so lucky to have the family I have, to keep me uplifted and happy. I'm fortunate that I think I'm going to see X's 9th birthday, even though my family was told I would die before his 4th. Hopefully, maybe, the steroids will help pull out another few years.
Sent from my Verizon Wireless BlackBerry

No comments: