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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Thursday, October 16, 2008

Full Disclosure

I’ve been in a little bit of a funk today. I’m now awake after my second nap and a shower.I have a low grade (99.2) temperature. It’s making me ache. I’m uncomfortable. I missed my pain meds this morning and decided I just didn’t need them, but I do. I’ve taken some to feel better, so I can move and have some kind of “quality of life.”
I decided to rent “Step Brothers” with Will Farrell and John C. Reilly so I could amuse myself. I’m looking to laugh.
My favorite quote from the movie, “I’ve smoked weed with Johnny Hopkin’s and Sloan Kettering. We blazed that shit up.” Thanks Will. The movie was worth it just for that line.
In all honesty, my mood has improved. My situation just needed a little tweaking so I could get back to the humorous, amusing person I like to be. I, obviously, can’t be this girl all day everyday, but I would certainly like too.
Certain friends can bring this out in me more than others, but along with my funk, I haven’t been answering my calls.
I want to thank Yanellie for calling me on the hour every hour until I finally decided to pick up my phone. My friends need to take a hard line with me. I know most of them do not want to feel like a nuisance, but I do love them. I really do need their support, and I’m in a difficult spot right now. Cancer treatment is depressing. I appreciate it when my friends stalk me until I pick up my phone.
Now, it’s 6:30 and I’m finally feeling like a human being. I having a free-for-all with my junk food. All my food needs to be processed for my safety, so I don’t acquire some sort bacterial or fungal infection from the food. Everything must be package, and there are relatively healthy packaged foods. But for me, it’s 3 muskateers and slim jims for dinner tonight. And I’m loving it.
I’m starting to feel happy. Jon and Xander are coming down tomorrow for the weekend. I’m tentatively excited about this. We had to cancel our visit last weekend, and it hurt. I don’t think that will happen now. I am getting so excited.
My plans for the weekend include, holing up in my room, and being seen at the clinic on Sat. for an infusion of platalets. Heather and Allen are taking Xander to Salem for the children’s fair this weekend. He’s going to be a ninja turtle. I’m excited I get to see him in his costume.
I haven’t seen my man in a couple weeks either. I’m feeling a little frisky. I’m wondering just how strict this no sex rule is. I think if I do get infused with platalets than maybe we could have a little, gentle after party while X is out. Just a thought.
I’m not sure Jon will go along with my idea. I take this personally. I don’t like being turned down. I try to remind myself that he’s looking out for me. He doesn’t want to hurt me. He knows he could potentially send me to the hospital.
These realizations tend to kill the mood, but I have ways of distracting away from these thoughts.
While I’m in the mood for full disclosure, I’m going to let out some of my secrets. It’s confessional time.
I'm not generally for full disclosure, specifically not with my doctors. I don't want to know about possibly life threatening tumors that will be addressed. I don't want to freak out because I have extraneous information. I want the problem treated, as efficiently as possibly, but I don't need to know exactly how much of an issue a certain tumor was. Don't tell me that information. It will only leave me stressed. I'm all for lying by omission. I love that.
My little confession for today, I steal medical supplies. Yes, I do. Materials are expensive, unaffordable, and a girl has to pick and choose what she is going to open her wallet up for.
This is not something new that I’ve picked in as a cancer patient. It started in college in the Bronx. I wanted my patients to have what they needed. I squirreled away towels and sheets early in the morning. I had a stash of medical supplies for just about every emergency in my locker. I’d sneak off with ultrasound machines, oxygen tanks, wheel chairs. I’m little. People generally don’t notice me, and I want my patients to have the very best.
It got to the point that my supervisor would send me specifically on these “recognizant” missions. I felt a little like Templetin, from Charlottes Web.
I didn’t lose my sticky fingers immediately on moving back to Claremont. I remember going to a different department and snatching a sling. The nurse told me I would have to call supplies to refill their stock. I blew her off. I didn’t think I’d see her again, and she had more stocked away.
Finally I calmed down when I realized the hospital was well supplied and I didn’t have to fight and steal to provide well for my patients.
This, however, brings us to today. Yes, I’m a cancer patient, and I can still get my sticky fingers on supplies. I’ve started to use Glad Press ‘N Seal instead of tegaderms to cover my incision site when I shower. It works okay. It’s cheaper than buying medical supplies, and I haven’t found where to steal large tegaderms from at DF. I don’t think they have it in the clinic. So I had to move to plan B and find a viable alternative.
The clinic does, however, have toothettes I can get my dirty little fingers on. I generally can pick out the nurses, Drs., NP, or PAs who will help me out. I have a friend who works at B&W who could be a potential accomplice, but I haven’t hit her up quite yet. I think the time will be coming soon.

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