Multiple personality disorder

Another beautiful day in Portland. Much of it was beautiful. Some less beautiful, but any day without a major intervention is a beautiful thing.

Sleeping has been a precious commodity. Part of the problem is that when you can only take Tylenol, getting behind the pain is a bad thing. Unlike the stereotype, the nurses here seldom wake me up for meds, so if I fall asleep right before the next dose, I wake up in a world of hurt later on.  Catching up isn't really practical as there is a limit to how much Tylenol you can have in 24 hours. When you hit that, the magic computer says, no, you can't have any more.

Having a special trach is causing special problems. There have been two scavenger hunts all over the hospital for replacement canulas. The canula goes inside the trach. In some models it is washable, but this particular one is ribbed like a bendy straw, which makes it disposable. Since I've been going through 2-3 a day, I need a supply. Our home health care can't get them for a MONTH. The hospital ordered 60 for me yesterday. The warehouse was able to scrounge up 10. Maybe. I can't go home without them, but I have to go home so I can start chemo.

Chemo has become more important. Despite steroids and ice, the swelling in my face continues to increase. Apparently between the trach and the tumors, there is only so much room in your neck. Throw in 52 removed lymph nodes, 30 previous rounds of radiation, a major surgery or three, and you have the recipe for swelling. Hope is that the chemo will reduce it. And, you know, kill the buggers.

Seeing all the nurses/CNAs has been so nice, even though not under great circumstances. I got to wash my hair today. As they are all oncology nurses, I've been mining them for advice about various things. Since some seem interested in my journey, I've handed out the blog address. But then I turned into Harriet the Spy. If you never read this wonderful children's chapter book (which is far better than the movie), Harriet is a girl who aspires to be a spy. She writes down all her observations about her friends and classmates in her spy journal. Unfortunately, it ends up in her friends hands and they are not impressed with what she had to say. I've been combing over in my mind what I've written in the past. Did I say anything offensive? We all know what I am capable of, and I'm sure some of you don't even what to know what is on this side of the sensor. Some have commented that everyone has an adjective, they just don't know what it is. I hope I didn't say anything terribly offensive for many reasons. Of course, the care has, overall, been wonderful, but you also don't really want to offend people who have control of your airway...

I've had plenty of Ebeneezer Scrooge moments today, too. As the inevitable possibilities, both good and bad, play out in my head, I find myself wanting to ask the Ghost of Christmas Future if these are things that WILL be or that MAY be, and can these events still be changed. It is very hard to think about some of these things without becoming overly emotional. Sometimes it will come over me in a wave. It is funny. In October, I was so upset about not eating and not talking and not teaching. Now I'm just worried about not living. Feeding tube. Trach tube. Scars, pain, swelling. Inability to talk. None of that seems as scary as not being here.

Nancy Drew has always been a guilty pleasure of mine. They were never the greatest, but just campy, and fun. I've been sleuthing about cancer. Why do I have it? I've read lots of stuff about stress in childhood, stress in a mother's childhood, or even a grandmother's childhood, impacting adult health.  Las Vegas certainly has its share of health impacts. Maybe I'm more sensitive to jet fuel in my water than others? For me, I feel like stress causes cancer. But then having cancer is very stressful, so cancer causes cancer? I don't know. I lived for stress for many years. How far could I push myself? How many jobs could I have? How many classes could I take? How last minute could I leave that assignment and still get it done? How screwed up could my (Ex) husband get before I could/would put him out?

I felt pretty physically horrible this morning. I was the invalid from Heidi. I always saw myself as Heidi, so this was a new place for me. I've never really been the bed jacket/breakfast tray kind of chick. Amazing what three hours of sleep will do.

We took a long walk this afternoon over the bridge to the VA. The OHSU is very beautiful, with trees, and bridges, and gardens. I love being outside. I told Kelly, from the neck down I felt like running. Of course, from the neck up I feel like I need to be popped. That little whisper voice does not want to give up. Halfway back across the bridge I found myself looking around for where else we could walk. I cannot stop pushing myself. It is either balls out, or full stop. Always.

Trying to ponder how the garden will look this year. Peas and potatoes aren't in. The stupid mice got into my seed bag and ate EVERYTHING! Well, except my saved seeds that I keep in jars. I don't know that it is worth it to start seedlings this year. That might be too much chaos. Or it might be good for me. I'd love to get some chicks, too, but thinking with an open airway that might not be great. Plus I am hoping to have guests come visit since I will not be able to get out for awhile and asking them to share the small bathroom with chicks probably isn't a great idea. Stuart and Ellen got a puppy and she is so adorable! Allie would never put up with a puppy. A pair of guinea pigs, though... But then that is more for Kelly and Karina to try to take care of.  I think I am crazy.

All good teen girl coming of age books have the protagonist pondering, "What if I was ____________ like ___________?" Beautiful, rich, smart, strong, brave... whatever. What would it be like to come to the hospital and just have your procedure and leave?  Not have it take three doses for Tylenol 3 for them to figure out I am allergic to codeine, which is why I am projectile vomiting-- not so fun after an adenotonsilectomy (1983).  Not make it through having my gangrenous gall bladder removed only to have the nurse run dilauded into my IV without asking and spending the next four hours vomiting my guts out. Not have them (1) break my Foley moving me and (2) put me on the Morphine pump despite my Opiate allergy after open heart surgery. They must have had 20 things running into my main line to stabilize me. Once the morphine was out, the options were... well nothing. About three am I asked for a Tylenol. The charge nurse came down and yelled at me that I had to have something stronger. No, I'm not puking when my sternum is held together with wire. At that time there was still Darvocet, the only med that worked well for me. Too bad it is off the market. It caused heart problems....

I got to Skype with the girls this afternoon, which was a bit of a challenge since I can't talk. They have to read my magnadoodle notes. The Dynavox volume is just not good enough, sadly, and even at a slow speaking rate, the voice is hard to understand. The device still has potential, but it isn't as smooth as I hoped it would be. I wonder how the girls would be different if I could stay healthy for any length of time. Poor Karina was dragged from Reno, to Vegas (three different elementary schools) to Eugene, just for me to get sick and be a mess. I've been sick most of Karissa's life. She has no memory of a mom who is "normal."

Tried to take the picture of the peaches tonight, but my smart phone continues to be smarter than me. Shhh... Kelly smuggled in some ground almonds, cinnamon, and kefir. Trying to make it through days and days of the same options on the puree menu, mostly high carbs, low fiber, loads of fruit sugars. I got two cups of chamomile tea for tonight, so hopefully this will smooth out the digestion.

The great canula hunt continues. It sounds like they are now branching out to other hospitals and medical supply. I'm not sure why the rush. I have to come back for a recheck this week, so we could get the balance then. I'm sure it has something to do with insurance, that if they don't discharge me with them, I can't get them. Speaking of insurance, I sometime worry that ours will put a hit out on me. I just continue to be more and more expensive.  I know what radiation cost almost six years ago. Guessing it hasn't gotten cheaper. Chemo is expensive, I know. These canulas are expensive. I'm sure this stay, complete with all of Thursday night's antics has been expensive again. Of course I feel like I am worth it, but wow. It is like when you seen how  much actors or pro sports figures make and you think, no, nothing they do is worth that. How many other people's lives would be infinitely better if they had access to a ten of the medical care I've had in my lifetime?

Dare I say it, barring any disasters, I should be home for tomorrow night's post. Until then...