About five hours I was diagnosed, (and while no one was looking) I googled “What is Leukemia?”. We know I have AML, but we’re waiting on additional tests to find out specifics about the best course of action.
After about an hour of searching various symptoms, I texted Emily and told her what my guess was and she promptly said, “not even close… stop googling and go to sleep”. I did, and I haven’t googled since.
It’s weird to me that a disease that I’ve donated to countless friend’s marathon races for is something that I know so little about. I guess I know a lot more now. So, I’ve been thinking about the best way to approach this new alien world and thought that I’ll start to post some truths for you all about the day to day in a Leukemia ward. I promise that none of them will be gross. I’m not a gross girl. It’s new for everyone that’s close to me, and I realized that we only really see the people with no hair and don’t know what they went through unless they’re close to us.
The guess is that I’ll get to leave here in around 20 more days. There’s about 20 rooms, 20 amazing nurses, a Nutrition Center (basically like any work kitchen), the Nurse’s station and a small family boredom room. The layout reminds me a the floor of a dorm(or a prison). Children under 14 are not allowed and everyone is asked if they are showing signs of illness before coming in.
My blood counts, and the counts of the other patients are so low that we are all extremely vulnerable to pretty much everything. Not only will we catch it, but we can’t heal. Remember when I bit my tongue? It was last Sunday and it hasn’t started to scab or skin over. It’s just a white spot on my tongue.
Should we get cut or bleed, it would be very difficult to stop the bleeding, so for the first three nights I was here,I had a bed alarm on and an alarm went off every time I got out of bed. Four nurses would scoot in and scurry me back into the bed and put everything back. I tried what I called the “leaning technique” where I was on the end of the bed on my knees leaning over to plug in my phone. Still set off the alarms and I got a good laugh out of that one.
This is why I’m so hesitant about visitors. I’ve already caused all of my friends and loved ones so much worry and stress that it would be incredibly unfair to them and to me to open myself to anything else. This is the first time ever that I can remember where the chaos I called wasn’t actually my fault.
Dropping stuff off or mailing is almost the better way to go because you’re not putting anyone else at risk.
The hardest part in this for me is that I’ve got so many people that I feel close to, I want to see everyone and interact. It warms my heart in my daily life.
Should I leave my room, I have to completely suit up, even more than my visitors to walk the hall. Not only to protect me, but to protect the other patients. Anything that comes into my room stays in unless it’s leaving the building. Including the germs. Complete with rubber gloves, a sanitary robe, a mask, and Edward. Doctors suggest that I walk 10 laps a day and I have a lot of trouble bringing myself to do it. It’s such a a hassle to feel so ridiculous that I was dreading it at first. Now, I think that they’re pretty used to this ridiculous getup. I don’t look ridiculous and they’re keeping my best interests in mind.
So, if I’m opposed to having you stop by, please don’t take it personally. Truth is that I’m afraid, don’t want to make things worse or stay longer. And I’m trying my best to be careful for the sake of all of you. I’m a people girl… I miss my morning walks with the dog, comedy, work, and going to my client sites and saying hello to all of the many, many people I care about in my life.
Desperately wanting to go outside,