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Sunday, August 29, 2010

"look mom, no mask!"


After 2 injections of the white cell booster my ANC is at 4200!! It took a major leap from yesterday...which was a measly 500. These leaps and bounds are great--as long as they continue to go forward. We are hoping I get to go home tomorrow and that I continue to feel okay (and my counts stay up) so I can have my second round of chemo on the 7th. My platelets are still a little low but "I am almost out of the woods." But I just found out that I may have to move to a double room now-----fuck, fuck, fuck. I love out "almost out of the woods" goes to, share a room with this person who is germy, possibly contagious, oh...and rest comfortable. fuck.

I wrote this next paragraph prior to finding out I will probably have to share a room. I am proud of myself for the single room--but my anxiety won't do so well in a double...

I would just like to say that I am officially a big girl (and no, not because I am chubby) but because I stayed at the hospital overnight ALL BY MYSELF!!!!!!!!!!! I know what you are thinking..."scott you dirty scoundrel, how dare you leave sweet, mild mannered, can do no wrong Dori all alone" HA. For those of you who know me and Scott you well know that he would do anything for me and that we work very well in tandem. For godsakes, the first night I was here he layed on 3 chairs, then transitioned to laying over the end of my bed and literally was my foot rest. They found him a recliner for the second night but he is a stomach sleeper and was super uncomfortable. So last night I gave him marching orders, he can go home to sleep--after all I am the one getting meds that allow me to fall asleep, I also have a bed.
I dislike hospitals and they increase my anxiety but I have gotten comfortable here in my little niche and was sleeping well. It was super empowering to be here myself and not because I just don't have anyone for support (flashback to the "other" open chemo room) but because I was able to do it.......surprisingly exhilarating. Our plan is to do the same thing tonight. He works at the hospital where I am so he just comes by after his shift, watches some TV with me until I get sleepy then heads home (which is also only 10 minutes away).

I also was well stocked with old fashioned donuts last night smuggled by my sisters and Nick--a good pick me up around 3:30am :)

So this whole hospitalization thing is shitty and the worst part is I had no control over it at all--but the doctors did. The odds were somehow still stacked in my favor considering I haven't had a fever, blood clot, or any of that other stuff that can happen when your counts are low..........but it never should have gotten this bad. So I come to the hospital where I am in isolation and they are working on bringing my cells up------ i.s.o.l.a.t.i.o.n--------a word that apparently isn't the same for all hospital personnel. As I had mentioned before people came in without gowns, without masks and even without gloves---having the opposite effect that we were going for here. This morning I hear my nurse getting talked to by someone while she was standing in my room doorway (I was still in isolation this morning) and she was getting told that she needed a mask and needed to shut the (my) door right now! What it boils down to is whomever she was talking to told her that they had been handling my isolation wrong MY ENTIRE STAY! Once again I am lucky that I didn't catch anything from staff while in isolation--I really feel like the isolation was a joke. Just another domino set up to fuck me over.....

All I want is someone to fess up to the mistake about missing my shot to begin with, to apologize for not getting me my nausea medication on time (let alone 3 hours late), to not listening when I explain symptoms, to not wanting to be my nurse because "it is a pain to get gowned up", to ignore my page for the same reason--just someone to make the wrong a right. It is extremely frustrating because it isn't just me that gets screwed over within the medical system, it is frightening to think of the possible outcomes of my situation.........a deep sigh is all I really have in response, and a pit of anger burning in my belly.

Bitter is probably a good word to express my feelings about this whole thing. I am not angry that I have cancer, or have to get chemo, or have to lose my hair and feel crappy--all of that I know has to happen--it is the cancer meal deal, done and done and out of my control. But all of this current bullshit, could have been controlled, it isn't a "trial and error" when the error veered from protocol or I know I am nauseated and need fucking medicine, etc............(deep sigh)

Yesterday was a big day, I took a shower, had my bed sheets changed, got a new gown and had diarrhea all day. Was the diarrhea too much for you to know? Well get used to it, I am in the hospital and they are super on top of bowel movements here--I think I have been asked more about that than anything else. If you are curious I had a movement today as well--I think it made my nurses day. Not only has Scott brought me in cheetos and twix but he brought me toilet paper from home. I am not sure what they have on the roll here but it sure as hell isn't toilet paper. But they have morphine so I forgive them for the toilet paper.

All in all I thank my lucky stars that I am okay. I told Scott that the hospital stay is like a weird hotel/mini-awkward vacation. I am not in near the pain that I was after my mastectomy and I am mobile. I can eat and drink on my own and have TV and the internet (now that I find out I have to share a room tonight it has turned into a creepy vacation of mini-terror). After a few nights though my body is aching to be in my own bed and to get to sleep through the night without having my vitals taken, and to get this damn heart monitor off my chest, and wearing a shirt with a back--gowns are no picnic.

My leg hair is also pretty burly at this point and I sort of wish I had shaved prior to coming into the hospital. They check my legs and feet for swelling all the time (I just giggle a bit inside) and try not to look them in the eye because I am afraid I will crack up. 21 days is coming up so my hair should begin to come out soon, my scalp is already a little different and a little tender and when I shower or brush my hair a lot more is coming out than normal. I am planning on shaving (well buzzing) my head prior to losing large amounts of hair. I still can't decide how that will sit with me internally (not necessarily shaving my head, but losing my hair in general)---empowerment is my goal, but in the back of my mind is "cancer patient." It is the stereotypical image of cancer in my mind (baldness). I am determined to change that.

Fingers crossed I don't have to change rooms and that I get to go home tomorrow!

3 comments:

  1. Hey, my next haircut is Wednesday. I don't want to pay for a new haircut then have to shave it off the next day so keep me up to date on the hair thing :) Plus I'm only losing the hair on my head. I'm not shaving my legs!

    Love ya kiddo,

    Dad

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  2. I can't believe the docs and nurses put you through all this- with the missed shot and isolation and not covering themselves up to visit you. So annoying and unnecessary, gah! But glad you're out of the woods and hope you're back home STAT.

    We wish you all the best - we love your blog!

    Kathryn and AC

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  3. Hello, Dori - I'm Shay Bonser's mom, Marie. I, too, endured chemo and daily radiation for anal canal cancer. Shay went with me when, when I had my stylist shave my head. Talk about empowering. Showed those hair follicles who was boss! So, Shay, one of my dear friends and I broke open the bottle of wine and we, and my stylist, toasted to the new me! Didn't go for the wig-thing, just wore my true self proudly (with a little help from funky earrings). Hang in there...take one day at a time.

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