I Spoke Too Soon-- NSFW

This is not a blog post to read at your desk at work. Or while waiting for your friend to come back from the bathroom at the restaurant. Or while waiting for your kids at soccer practice. Read it at home, with a loved one.

Know that I would prefer to be having this conversation with each of you in the comfort of my living room, holding your hand and comforting you as you encourage and comfort me. But that line would stretch from here to Terra Haute and frankly, I don't have the strength for it.

Thursday's biopsy/abscess drain turned into just a biopsy. There was no abscess to drain. Just a large tumor. It runs from under the offending back tooth on the bottom right, up the back of my mouth, and over to where my right tonsil would be if I still had one. This was confirmed by the two CTs, a biopsy he took and had read while I was under, and what he could see with the scope. He also saw debris down my throat, but with all the treatments I have had, it is hard to say what this is.

He shotgunned out communications to all the knowledgeable people in the field for ideas. I am out of surgical and radiation options. He got the name of another chemo drug, Gemcitabine, that works differently than those I have had. He knows of one complete cure and several instances of it buying good time. The cured gentleman lived four years and died of something else. Four years would have seemed like a pittance on Wednesday, but now it seems like manna from Heaven. At if you avoid that whole dying of something else thing, it gets better.

Without treatment, his predictions are dire. Short months at best. No. This is so absurd and unacceptable that my brain will not even let it enter.

Dr. A is supportive of anything we want to try. He is not offended at second opinions or trying whatever. He was negative on traveling to MD Anderson Cancer Center only because, at this point, I am pretty sick. He fears I could get down there and not be able to get home, except, you know, under the plane. Sorry, the gallows humor is mine, not his. It helps me try to stay on an even keel. That would not be a good outcome for anyone, either.

We plan to get into the cancer center here ASAP. If Dr. B cannot get on board and be supportive, we will demand someone who can. If the center can't do it, Portland it will be. There is a drug recently approved for melanoma that has shown good success, but Dr. A. hasn't found a place yet. Maybe UW. When asked the key question, "What would you do if I was your wife?" The definitive answer was Gemcitabine.

Yesterday, medical transport rolled me over to his office in a wheelchair (one of the hideous new plastic ones that are worse than any school chair you ever sat in) and he put tubes in my ears so I can at least hear. I cannot definitively say if having someone cut a hole in your ear drum has improved since I last has ear tubes put in 20+ years ago, but one the scale of things I've had done, it doesn't really make the top 50 at this point. I can't taste, except the nasty med tastes coming up in the back of my mouth- yumm. I can't smell as the swelling has closed off my nose. When my eyes swell shut, I can't see obviously. Then my ears stopped up with fluid. I failed to mention this before surgery, or he could have put the tubes in while I was out. After they give me Versed, I know nothing, I see nothing... I also remember nothing. A strange sensation for me.

After tubes, I got wheeled back in the same uncomfortable chair, had one last horrible hospital breakfast, and was discharged. Rachel did get over to see me during this time, which was very nice. To be blunt, she sure has her shit together. More together than  me, to be sure. Out of all this shitty experience, the people I have met have been an amazing gift. Whenever you feel like there are no good people out there, or that there is no hope, think again. I have met wonderful person after person after person. There is much good in the world.

I wrote a few notes to the amazing nurses. Their skill and kindnes truly made all the difference. The ride home was far more comfortable than the ride up in the ambulance on a gurney. That is an experience I'd prefer not to repeat.

So here we are. I am off antibiotics. I am on my usual two pain killers of choice, Tylenol and Ibuprophen, as well as using ice regularly. The added Gabipenten, a nerve pain drug. Unknown if it will help, but worth a try. They also added a steroid to get the swelling down. They wrote me an Oxycodone RX, but I didn't take it. Puking will not make this better and I cannot imagine how many anti-nausea drugs it would take to keep that down.

Time marches forward, and in the little over a week I've been gone, the yard has changed. The corn has tasseled. The pumpkins are spreading everywhere, and there is at least one little one set. The cucumbers appear to be about done in. There are a dozen in the fridge if anyone wants. The raspberries are getting to the ripen/rot stage of the game, so probably not many more from them. I did manage to go out an pick a bowlful of large tomatoes today, as well as throwing many mouse/slug/snail chewed ones to the chickens. The chickens continue to elude us with their egg laying locations and we had to BUY eggs. What is up with that?

There are still 10,000 gorgeous cherry tomatoes. It would make me feel better if someone picked them. To eat. To take to the food bank. To ding dong ditch on someone's porch with zucchini you are swallowed up in. There are also surely more tomatillos, which we could use/freeze, but I don't quite have enough stamina or balance for rooting through the weeds for them.

It will be time again to plant garlic soon. Eileen planted it for me last fall, when I just knew by this fall I would be ready to plant it myself. And, hopefully I will. I'll need to fertilize that bed though. And get those renegade potatoes out of there.

I continue to struggle with making this all about me. If you know me at all, the center of attention is not where I want to be. Well, not exactly. Yes, if I'm telling a joke or a story. If I am on one of my rants, then yes, hey, everybody listen to me. But I can't talk. However, if you try telling me how great or wonderful I am, I will probably deflect it. This particular trait makes some people, including my old friend Richard, quite annoyed with me. But it is who I am.

I still find myself worrying about ordering for Hanukkah, answering emails, helping my dear friends and loved ones cope with this news rather than focusing on me. I am not helpless. There are things I can do to improve my chances of success. I need to do them, yet, as so many times in the past, I find it hard to ask for what I need. I am happy to fight like hell for what others need. Now I need to make me focus on beating this, with every fiber of my being.

So what can you do? First, and foremost, continue to care about me. Pray if you are a person of faith, think positive thoughts if that is more your style. Like to research? Look up info you might be helpful. Like to tell jokes? Send me a laugh, I could use it. Want to visit? Sure, but check in so you don't end up here when I can't see you. My little understanding of the new drug is I will have to be immune cautious, particularly avoiding anyone who has been freshly vaccinated. I need to find someone with a baby to hold before my first dose. Anyone have a baby I could cuddle for a bit? Piper P, are you out there?

While I am far, far, far from giving up, one must maintain some grounding. There are legal issues to sort. There is a wedding dress to find. There are support systems to put in place and, heaven forbid, funeral plans to discuss. This is reality, too, whether is be short months or long years. Or as a saying I once read put it, the days are long, but the years are short. That is surely the truth.

My advice? Find joy each day. This I was generally good at doing. Look for the positive. This I have gotten better with over time. Love your loved ones fiercely and let them know it. I hope I succeeded in this. Learn the lesson of the elephants, that sometimes you need to just pull off the road for the fun of it.

I have so much else to say, but there will be more blog posts. Hopefully many many more blog posts. Cheerier than this bad boy.

Until tomorrow,

Love,
Kiara