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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Sunday, February 8, 2009

Game on

Let’s all give a big “Thank you, Jesus” for Melissa, my NP from Dana Farber, that decided on Friday that despite the lack of scientific proof that I had pneumonia, she would prescribe me a stronger antibiotic anyway. I was already taking bactrim to prevent PCP pneumonia, but just in case, she upped it to levaquin since I was feeling lousy.
And guess what may have happened if she didn’t.
I, at the very least, would have had my friends from NY trekking me up to the ER at Dartmouth so I could get some strong IV antibiotics (Vanco, anyone?) for the extreme insane fever that topped out at 102 and the inability to breath I was experiencing.
Worse case scenario, I would’ve been darted from Valley because my lungs failed and I needed to be intubated and have a couple day stay up in the ICU.
But no, neither one of these happened; they were prevented thanks to a little heavier antibiotic just in time.
Actually, by the time Brynn called and offered to pick up the meds for me I was all ready barely conscious and not making much sense.
I don’t think I even had a real conversation with her. I think I said, “I have pneumonia. I need antibiotics.”
“Are they at Rite Aid? Do you want me to pick them up?” She said, slightly panicked.
“Yes, the money is in my wallet.”
Then she said something, I don’t remember, and I hung up and passed back out.
I passed out until she came tearing through my house. I informed her that if Rite Aid wanted her to wait she needed to tell them it was for me and I needed it immediately or all hell would break loose.
She ran off to the pharmacy and I fell asleep again until she came back in telling me about how proud I should be of her because they did pull that line saying “it will take an hour,” and she said “Oh hell no, she needs it now.”
But I didn’t really respond to her story. I think I might have groaned.
So she ran off to get me a big glass of water and helped shove that levaquin down my throat before I went back to sleep.
I woke up at 10 pm when Laurette, Maggie, Danny, and the kids showed up and I immediately started throwing up.
I downed some kytril and I chewed some ativan so nobody could tell exactly how sick I was then when they got into my living room I told them I had pneumonia.
Laurette immediately started gathering all the blankets and piling them on me.
I said I was going to go to sleep so I would be better in the morning. The first broom hockey game was supposed to be at nine.
Well guess what? I woke up at nine feeling just as badly as the night before. Before I even rolled over I had stuck that levaquin down my throat praying it would work and I could have a decent day.
When my stomach threatened to send it back, I took another Kytril and another ativan to keep it there. When the pain from the muscle and joint aches and the breathing was too much, I took my 10 mg of oxycontin and 10 mg of oxycodone on top of that just to make sure I would be able to function for a while.
I did. I functioned long enough to go to the carnival, chill in my chair by the fire or by the game and take some pictures. I was able to talk to a couple people who I loved and missed and made plans to meet up with them later after I had my nap.
I did all this before remembering that I had to rush Lexi to B-ball practice because her pizza party was today.
Yes, I felt this terrible, took that many medications to remedy it, and I was talking care of two children. Okay, so they are 5 and 9, but damn, I think many of you out there are voting that I wasn’t even capable of taking care of myself.
I was lacking a little in the judgment department when I decided to haul ass to get Lexi to our house and to practice as quickly as possible.
Thank goodness the stars were looking out and I had not put my car in 4 wheel drive. I sent my jeep straight into one of my snow banks alongside the driveway.
I didn’t think it was a big deal, I like to take the corners fast at my house and threaten the snow banks, but this time, the snow bank won, I was stuck.
J came out with a shovel and demanded we fix this before we took Lexi to practice, but I decided I shouldn’t really be driving anyway and made for the house.
Jon and Brynn got the jeep out of the bank later with some chains while I was comfortably asleep in my bed.
I did manage to cook the meatballs and the pasta salad and get the whole buffet set up with the plates and the plasticwear, etc. before Laurette and I decided to escape for a “nap.”
Except our “nap” lasted from 3-5pm when the kids found us and decided to turn on spongebob and jump on the bed.
I decided to get up and hang out with the girls I’d invited over while I was awake, but that didn’t last so long since I was still feeling miserable.
I might have given them a whole 2 hours before going back to be to pass out for the entire night.
I only woke up during the night to take the “absolutely necessary meds;” prograf, and to try to ring out my shirt from all the sweating I was doing by having my fever FINALLY break.
When I rolled out of bed I knew it was to take a shower immediately because all the sick funk that had been in my body had decided to sweat it out during the night.
I needed to be clean.
I also needed to repeat the morning cocktail from yesterday since I still felt like Holy Hell and hadn’t eaten since Friday afternoon. It is now Sunday morning.
One mg of ativan, 1 mg of kytril, 10 mg of oxycontin, 10mg of oxycodone, and my levaquin got me out of bed this am, and that does not even include the standard medications I need to keep my body at a beautiful functioning homeostasis.
These medications represent what was absolutely necessary to drag myself out of bed to spend some quality time with my friends.
These are the measures I take to have a semblance of a life, and despite being sick, I’m still happy.
I’m happy my friends that I’ve had for the past 8 years that I bonded with over rowdy night outs and weekly clubbing escapades have evolved with me to a place where I can be sick and disabled and they can now understand and love me with my limitations.
I’m a lucky girl.
No matter how much my body misbehaves and my lungs suck.

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