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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Tuesday, July 6, 2010

I'm a lucky Girl

Regressed memories are very real.
I can testify to that as an absolute fact.
I don't remember almost 30 days after my first bone marrow transplant.
I remember bits, mostly the good times, when someone staying somewhere did something fun with me like playing with make-up, taking pictures. Little things.
I remember there were some decent times and I can do it again.
I don't remember the pain and how terrible the side effects were.
I dont even want to type about them now because saying it may  jinx me. It's like saying beetle juice three time. . . ... . .

I wrote this before all hell broke loose.
Somehow, somewhere in me knows the process of my body starting to break down and I can indentify it. It buys time. It's a large part of why I'm alive.
Sometimes I also wonder if I became and over ahceiving ICU/ED nurse to keep myself alive.
I certainly didn't get to work at it very long.
I think I've saved myself more than anyone else, but I have to say, I call that a good investment.
Tonight, I'm awake.
This is part of my healing process.
When my body goes haywire my circadian and normal body rhythms are thrown around like I threw them in a tornado, but the end is one night of insomnia.
That's all, not too bad, and that's tonight.

My big life threatening illness adventure started last Monday when I started experiencing some pain in my mouth that made it difficult to eat. I went into the clinic for fluids to avoid hospitalization.
 Tues., the pain had progressed to where I could drink ice water and eat vanilla ice cream in small bites. Again I went into the clinic and tried to avoid hospitalization by playing with my pain medications and getting fluids.
Weds. I took a little more morphine than my practitioner and I were comfortable with and went to the hospital doubled over and in tears. Alongside al this pain was a headache I think was separate.
All this after just one dose of velban.
It's a little scary.
Again, I find myself fighting for my life, but this time, it was more difficult.
When my mind is hazey I can't focus on my survival techniques. I can't focus on the ones' I love and my ties to the world. I'm very lucky to have loved ones who sit by my side during the worst.
Just like most admissions, I worsened as an inpatient. I was put on a patient controlled analgesic (pain control) so palliative care could tally how much I was taking and get me home on oral medicine.
But the pain just didn't stop.
When it did, I was whoozy. I was loopy. I couldn't hold a sentence.
I don't even think I was coming out with funny randomness.
I just think I was talking crazy and scaring my family.
This time, for the very first time, my family was asked on multiple occasions if I wanted to be resuscitated.
This didn't go over so well with my family.
I think there is a little miscommunication in what I hope to accomplish taking this route of chemotherapy. I'll be talking to my providers about this, and quickly.
I don't want information withheld because someone makes an assumption that I'm not interested in a surgery because it goes beyond keeping me comfortable.
I want to live with my cancer. That's the idea.
It's a difficult concept to explain, but now I know it needs explaining.
Saturday my head cleared and Sunday the Doc had me discharged by 8am.
That's a personnal record for earliest discharge.
I think I should sign him up for the Guiness book of World Records.
Sunday I laid around, only a little sad knowing I was missing two birthday BBQs.
It is solace knowing that maybe, hopefully, I'll be able to attend healthy next year.
I was also able to nibble food all day and chill with my sister and her family.
Finally, today, I found my craving: Mac 'n cheese.
I was finally able to eat what somebody would consider a meal! I also didn't require a nap. I was able to attend X's soccer game, but in a nasty cranky mood not only bc it was 09+ degrees, but because I'd misssed my midday pain control dose.
I need to get used to that new schedule.
Now, I'm  up past my bedtime puttering around, like I always do at the end of a life battle.
I crawl into bed and pray, like I try to do every night. Then I start to reflect on how I could do things better and pray for others. Then I think about plans for saving the world in general. I think about reading, writing, art, projects, anything to relax. Usually I give up about 11pm to catch Chelsea Lately and get to bed by 1 or so.
Not so much damage done. I'll need a nap tomorrow, which I'll be able to have since X starts reading camp.
I don't know how I feel about having him away from me for weekdays during the summer.
He got right back into our last years' summer routine as soon as school was out. He bought some cross word/word find books, math books, and dr. Seuss books to read. He'd bring out a different game to play every morning and come up with projects.
I was amazed at how clearly he remembered what we did last year.
We didn't get a chance to do those while I was in the hospital, but what X did do as soon as he heard I was admitted was come home and clean my car!
He cleaned my car!
I can't believe my little 7 year old boy would be so loving and empathetic. He tried to do it all by himself at first, taking the broom and handheld vacuum with him before Dad showed him how to use the real vacuum.
He took the mats out and replaced them. Cleared all the garbage.
I love it. I love that he is thoughtful, but I also like that it's clear his coping mechanisms are maturing.
When I get stressed, I clean. It gives me a sense of control. My surroundings have to be predictable because I feel like everything else is chaos.
J does this too. I'm sure it isn't all stress, because J does a lot around the house as it is, but he was running around like superhuman while I was laid up. The house was clean when I came home even both X and Lex had been here for days. Laundry is done. Grocery shopping is done. He's coaching soccer, organizing practices, bonding with x while I rest, and running the kids around while I sleep to games, movies, and birthday parties. He is impressive.
Again, I get to come out of my fight knowing I'm a lucky girl.

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