Tuesday, May 24, 2011

down in the boondocks

It's kinda hard to type with this monitor thing on my middle finger.

I'm in the ICU getting desentitized to Fortaz. I totally balked at the idea of coming into the ICU, but it's been great - as great as hospitals can be anyway. I mean, I've gotten my meds on time, my RTs were quite knowledgable about CF, and I slept all night - at least until my nurse woke to tell me by BP was 77 over I dunno what. I think it was a fluke. 77! Makes me wonder WTF happens when I sleep at home! Well and I've got all these damn cords all over. Still, I'll take this over the Oncology floor where I was before n.e. day.

So 10-14 more days of IVs is coming my way, but I'll deal. I want to feel good for our vacation which is rapidly apporaching.

That's about all u have to say. I want to go home!

Thursday, May 5, 2011

I lied. Reaccessing today for 4 more fun filled days of IVs. Boo. At least its just the one m
ed, right?

Wednesday, May 4, 2011

this is the end, beautiful friend, the end

Today has been a day of endings.

I finished up my last dose of IV Tobra about twenty minutes ago. This is the only time I have ever been on just one IV med and man, is that cake! I am also on inhaled colistin, so it's not like I am on only one med, but still, one infusion BID = sa-weet! So that's done.

That's not all as pie in the sky as I just made it sound, since this was an experiment to see if it would help me before I need to go in and get desensitized to meropenum. er, I guess it's Imipenum. Either way, I haven't heard much good about either med, so I am not really looking forward to that and honestly, I only feel maybe 70% better. I got a stomach virus in the middle of this course of meds that left me with a 102 fever, vomiting, and all together miserable. I feel that it set me a back a bit. Once the fever edged over 100, my heart started beating really hard and my breathing became very labored. I was acutely aware of this, much as I remember I was with H1N1. There is just a point where it seems that my body really begins to struggle with fevers. Maybe everyone's does, I just don't have a whole lot of experience with fevers.

I was thinking today as I was infusing my last med about where I am with my health. In 2007, I weighed 103 lbs and had an FEV1 of 50%. I did no treatments up until that point. Well, no, I guess I had my Vest, because I know I got that soon after my daughter was born. I remember because my boobs were full of milk and it hurt to Vest at first. But anyway, a year later, that's where I was. I feel it's entirely possible, had I not changed that road I was on, that I may not even be here today. Who knows where my health might have been and then to have suffered through the Swine Flu epidemic? yipes. I feel certain it was the grace of god and lungs that cooperated that that didn't hurt my body worse than it did, and I know I lost some lung function over that.

Anyway, I guess that's neither here nor there because I did get compliant and I am still here and I do have a baseline that now hovers around 70 and that is terrific. So I have to remind myself when I reeeaaaalllllyyyy don't want to do IV set #2, complete with some hospital time, that that's just how you have to play this game. If i want to be here for a while longer, I gotta play these cards right.

I really want to be here to see my kids grow up and have kids of their own. I was reading a book to my daughter tonight about a kid that got an ugly knitted sweater from his grandma and I felt deeply how much I want to share that part of life with my kids. It's a realy hard pill to swallow that I might not. Sometimes I can get kind of flippant and even obstinate about it when my family spouts off uber positive thoughts about how possible it is for me to live for a long time more. I feel they are deluding themselves and need to realize the stats are not in my favor. But the truth is, the deep dark truth, is I really would like to be around for a while longer. Facing your own mortality is not easy. I know I am still far enough removed from dying that it solidly remains a "what if" idea. Many people I know are already in end-stage lung disease and I am sure their outlook and wisdom would greatly differ from my own.

I'd come up from the basement earlier tonight when I realized I left the phone down stairs. I asked my son to bring it up to me.
"I'm too tired to come back down" I told him.
"From your thing?" he asked, pointing to my chest. I said yes, that sometimes what's meant to make us better can wear us down a bit first. He called back up the stairs that he hoped they would find a cure soon. This is my son. Somehow squashing my parents' optimism about a cure doesn't seem as unkind as doing it to my son. So I called back, "I don't know that there will ever be a cure, but hopefully they can find something to help me live a long time." By then though he was already immersed back into his Xbox game and I was feeling a little blue.

I digress.

Another ending came as I finished up teaching my 3rd semester in the world of higher learning. I had a failing student complain about me and my "unfair" grading policies to the Dean of my department. She called and asked me if I would be willing to let him take his final exam again. I really debated this. It seemed if I said no, the likelihood of my rehire was small, being an adjunct low on the totem pole. At the same time, I have been trying really hard to be more of a stick-to-my-guns kind of person. What it finally boiled down to was that though I thought that this kid was acting like a spoiled brat, he was entirely capable of doing the work. So to be punitive and fail him based on bureaucratic rules would really be a bit asinine and would probably keep a bright (but slightly annoying) kid from doing something positive with his life. So I let him retake it. It kind of botched up my evening since I had to go in just for that, but he did well and passed the class. So he's done, as am I, for the summer.

I really enjoy teaching at this level. It's pretty unlikely that I will ever go back to full time school teaching, but if I ever do, I am totally holding out to at least get a position in high school. Or even night school, GED. I mean, my dream was to be like "Dead Poet's Society" or something, but it seems I always get thrown in with the lower echelon of studetns, be it skill level or SES or what have you. No matter why, they've sort of become "my people" and I feel I do well by them. So I hope I can continue at this for a while longer.

Finally, in the end of days, I sent my entire master's thesis to my director today. That consisted of 63 pages of narrative and 15 pages of literary context. It took me almost a year to finish it, partly because that's how long it took me, and partly because I had no deadlines and I am working with a very over worked faculty memeber who wasn't always quick on returning my emails and drafts. I am still waiting for her reply, so I may have to edit and revise a bit more, but the bulk of the work is really truly done. Thank goodness! It's such a weight lifted off of me. I will actually get this degree. For a while there it seemed as if it might not happen.

With all that, I leave you with pictures. I just got a new computer and I have a built in camera (so yay! Skype!). I'm only about 10 years behind the rest of the world with my technology. I was just playing with the camera this morning and then again after I finished infusing my last dose of the Tobra.

Enjoy my kewpie looking pictures. (I'd rather be Kewpie looking than Ewok, thank you very much!)