Where to Begin

First, I know, I'm sorry. It is Friday already. I seriously don't know where the time goes. It isn't like I'm slaving away in the salt mines or anything.

Tuesday was okay and Wednesday passed in a blur of nausea. Zachary was able to give my neck/fingers some relief, but that will be an on going process. Having my head kinked forward all the time has consequences, and they are largely being felt by my fingers at this point.

Thursday was miraculously nausea free. So nausea free that I was almost paranoid about it. I had a long soak in Epsom salts and baking soda followed by a long nap.  See, no salt mines here.

While I was lying about, Heather and Angie we on their usual rounds of Karissa toting. Heather even got the pleasure of skate night. That is one event where the inability to smell would be welcome...

Eileen has been on a planting bender at our house, with little surprises tucked in every nook and cranny. We got a chance to visit a bit today as she was mowing, trimming, and hanging up a wasp trap. She said I had the nicest soil she ever put her hands in. She might as well have said I have beautiful children, or that my husband is attractive. I definitely committed the sin of pride. I guess thirty-five yards of leaves over the last several years has made a difference.

Today was also nausea free. So nausea free that I even REALLY tempted fate and put a Dickie-Jo's cheeseburger, sans bun, down the tube. I will tell you blended cheeseburger smells like cheeseburger and tastes, such as I get, like cheeseburger. It looks vile. It also sticks cheese all inside the gtube, so I probably with go without cheese in the future. But I didn't get sick or any other horrible consequence.

We've actually been on a bit of a meat bender of late. Gwen brought a lovely venison soup last night and vegetarian Eileen brought her husband's gift of carnivore's delight tonight. Karissa loves it all. If it comes from someone else's house, it is the best food ever.

Have I mentioned that we are incredibly spoiled by our friends and community?

I was not happy with my chemo doctor Monday. In reflection, I think what bothered me the most, besides the fact that he thought giving up was an option, was that he spent exactly five seconds considering what protocol to use. Now, he could have been thinking about it awhile, but the way he presented it was, "well, if  you're going to do radiation, we'll do "this" with it." That could be completely unfair, but that is how it came across.

I asked Dr. A. He spoke to the chemo oncologist at OHSU for a second opinion. There is a clinical trial of a drug that attacks the type of tumor (non-expressing PTEN gene???) I have. But here's the rub. It's a capsule. No, it can't go in the gtube. No, it cannot be opened and mixed with anything. It has to be swallowed whole.

I haven't swallowed anything more significant than a few sips of water in seven months. I have no idea how large a capsule is, how many times I'd have to swallow one, or how quickly they dissolve (how many chances do you get to get it down?) Rachel is going to do a swallowing study and we'll see if there is anyway I can do it. The odds are not in my favor, and I know that. The trach tube doesn't help, either, because it limits my mobility, so I have even less of a chance of wrangling my neck around to the exact right position where I can trigger a swallow. But it is a clinical trial, so they get to make the rules, no exceptions.

Wednesday I am going to Portland to have a swallow study and see what my chances are. Of course, I am not at the point where this trial is my last ditch effort, which makes me feel better. I want to ask, if I don't qualify, what the oncologist up there thinks is the best thing to pair with radiation.

It's always something.

In other news, the talking is bits better. It really is only two or three words at best and you better have some context, but it isn't helpless silence.

The sense of smell continues to improve. However, this is not always a good thing. I don't know if it is my body pushing the chemo out or what, but the last couple days when Kelly pulls the canula, the smell is something indescribable, and not in a good way. He says it isn't new, that all the trachs smelled like that. Lord, if that is true, I'm glad I couldn't smell them. Ick. The neck wound continues to heal slowly, slowly, slowly, but we have finally reached a point where we can get a pad between the trach and the wound so it isn't constantly being dug into. That can only be a good thing.

Because we don't have enough excitement in our lives, there was just a bird in the chimney. Yes, just now. Kelly, for once, got the pleasure of opening the damper and chasing it all over the house until it managed to fly out the sliding door.

Friday is also PT day. Karen spent a lovely hour trying to release my neck so that my fingers would stop buzzing. I never want the hour to end.

Her yard is also so lovely, full of peonies and poppies (the big red kind) and clematis and other delights. For me, as much as I love many flowers, I could seldom bring myself to plant them. Where a clematis is there could be kiwis or grapes. A peony versus another blueberry bush. Poppies or pumpkins. Most of the time, flowers were just not an option if something that would produce food would go there.

But pretty affects me more than food at this moment. Yes, I still eat, but it isn't the experience most people have. Yes, my family still eats and we will still grow food. But will I be as obsessive?

When I see pine needles on the sidewalk being uselessly blown into the street, I think, those make great blueberry mulch, I should come get them. When I see pine cones laying in a parking lot being run over, I think, those  make great firestarters. I should gather them. When I see big piles of horse poop at the barn, I think, that makes gold when I mix it with the left over leaf pile. I should haul some home.

It is hard for me not to act on those impulses.

When I see the need for volunteers, a task that needs doing, someone that needs help, a cause to take up, I want to sign on.

It is hard for me not to act on those impulses.

On the upside, I have been able to do more. Wash Karissa's hair. Play a game with her. Make my own food sometimes. Write letters. Crochet. Still, it doesn't seem much in the grand scheme of things.

I know that none of this is forever. I will get through treatments and I will feel better. Healing will take time. More surgery is not an option for me as my neck is already held together with bailing wire and duct tape. But feeling better is an option. Eradicating the cancer is the plan and whatever it takes to get there, I'm up for it.

Until Saturday or Sunday...

Kiara