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."
Thursday, March 25, 2010
the stomach bugs attack!
Long time no post. Where do you think I've been? Off on a bender celebrating? Recovering from the celebration? Living it up bc reform has passed? Too cool to post now? Wrong wrong wrong wrong and wrong again. I was just getting a friendly reminder from my body in the form of a viral beat down that I am not well. I am delicate. I am fragile. And at any moment in time day or night the switch could be flipped and I'm back at square one: flat on my ass unable to move. I bet I had some of you convinced I was in the clear. Yes, that's where I have been. No celebrating for me. No fun interviews. Do you want to hear about the dirty details? It has been a while since I suffered so badly I had to be rushed to the hospital. Monday night after getting home from x's indoor soccer practice I felt fine and went to bed as normal. It was 1am when all hell broke loose, from both ends. I flew out of bed, making it just in time to heave in the toilet, cursing myself for the steroid induced munchfest I succumbed to earlier in the eveningthat allowed me to have so in my stomach: cookies, chicken, asparagus all partially digested in the mix. Then my stomach started to twist in knots and gurgle and scream and I knew I was under full gi attack. I flushed the toilet and turned around. Then I sat and sat and sat and sat bc somewhere between 9pm and 1am my ass had become a faucet. Never before have I experienced abdominal pain so severe (okay, I probably have, no pain that I drugged out of my memory). The cramping had me doubled over, the throwing up had my muscles in spasm, and all while I had to keep my bum firmly planted to the toilet. I kept thanking God for modern amenities. I couldn't imagine having to undergo this suffering next to a dirt hole. It's bad enough sitting on the porcelein or passed out on the tile in a bathroom less than 6 ft from my bed. But that's what I did. Oh the indignity of it. After the first round of this stopped I cleaned myself, brushed my teeth, chewed some ativan and prayed it was a fluke, a one time deal. When again I was torn out of bed at 2am to sit on the porcelein throan while spewing in the garbage pail in gut wrenching pain I thought, maybe, I was in trouble. But when the episode was done I still managed to drag my body back to bed, drenched from my sweaty chills and obvious fever and take some sips of water. It was then I heard j, in his ultimate wisdom, say "whenever I drink water after throwing up I throw up again." My stomach heaved. Gggrrreeeaat. Thanks for the support hun. Round three I finally tried to call "uncle." I asked j to bring me to the hospital only to be told I "just had a virus" and it "would be gone in 24 hours.". Thank you dr. J. You suck. FYI: The four previous years of manipulating my immune system for fun, my current prednisone aka immunosuppressive therapy, and trial photopheresis make a gi bug going around dangerous, even life threatening for me. There is no such thing as "just a virus," and any illness I have can not be compared to "so and so's" unless they too have undergone two transplants and have an immunesystem that doesn't knows its ass from its head. But would he take me to the hospital? Big no. Don't worry. If you're wondering how I really feel about this, if you worried I'm making my feelings to vague, I'm going to let you know how I feel. You would think I was some hypochondriac that liked to run to the hospital in the middle of the night, who has never had a real health problem in my life the way he responded. Maybe I have munchosens?! Maybe I just hang out and in my spare time think up ways I can disrupt my families' beauty sleep and force them into taking me to the hospital for giggles. Because I am THAT kind of sick, not sick ill, sick demented. I thought about calling an ambulance, mostly bc I didn't think I could get to the hospital with a clean set of underwear, but health reform hasn't kicked in that fast and the $5000 ride was certainly a deterent. Instead I discovered we had no immodium in the house and added 30mg of morphine to the regimen. It was then,with no hope of getting to a hospital bed, I succumbed to sleeping on the floor of the bathroom. My body hurt too badly to move the 6 feet btwn bed and toilet. My head was pulsating. Every muscle ached. I repeated the vomit/diarea process twice more, praying that benadryl, the one thing that may actually make me sleep would miraculously materialize, when my husband came through with some tylenol pm. It was now 5:30am. I announced to J, who was officially on the shit list, that I wouldn't be taking care of x in the morning (no, this has to be stated. It is not self explanatory in his world), and finally fell asleep. I woke to the sound of the phone ringing at 10:30 am only to realize I was too weak to move! I couldn't roll over I hurt so badly. My muscles were jelly. My mind in a haze. "Call for help." My mind whispered. "Call for help. Call for help. Call for help.". I looked around. Aha! There was my cell phone, within arms reach! I picked it up. The screen was black. Hhhmmmm.... I pressed the on button. Nothing. Maybe I was too weak? I tried again. Nothing. Maybe I just forgot how to use it? I tried again. Nothing. My damn lifeline was dead. Uurrrggghhh. It may as well have been a useless couple hundred dollar rock. I could see the other phone. It was on the other side of the bed: my husband's side. So so far away I might as well have needed to take a plane to get it. I mustered the strength and dialed dear ol' dad. Thank goodness for my parents. I'd probably be dead by now with out them. All I said was, "I need to be taken care of." And he dropped everything to take care of me. That easy. Unfortunately, had it not been I may have just went back to bed and gotten sicker and sicker. Not because I want to get sick but bc by that point that's all the energy I had. I was able to call the dhmc heme team to ask if I should be seen through the er or clinic and miraculously my doc was on to see and admit me for dehydration. Just a 24 hour stint thaat I barely remember since I slept through the whole thing. The beauty of being on palliative cares' service is that the masseuse was told I'd been admitted and came special to see me! I love BA. She also reminded me that I need to get in touch with helping hands, a service that will provide me with in-home massages for free due to my illness!! Yay. Needless to say, I've gone three days without the urge to binge eat from the steroids. Good news is: I'm recovering. I'm well enough to type, talk, roll over and smile. Good enough for me.