Tuesday

My apologies for slacking on the posts. To be honest with you, I don't know where the times goes. Suddenly it has been three days since I posted. How does that happen?

First I must say a huge thanks to the dozen plus friends who descended on our yard Sunday afternoon. They mowed, weeded, trimmed and generally got our yard back in shape. While I look at the weeds and piles and such, I have very little stamina for such tasks. Kelly is swamped between work and taking care of everything else that the thought of adding any more is insane. So thank you, thank you, thank you to you all!

I was feeling quite cruddy on Sunday, in fact. I had had fantasies on Saturday of coming out and helping a bit. I'm assuming that would have entailed me getting off the couch and getting dressed. The feeling better rebound comes later and lasts less time as treatment goes on.

But treatment does go on. Monday was an afternoon of chemo and radiation. I was in at two, had blood work and then had to wait for an open chemo chair. I was back there by 2:30, but I somehow slipped everyone's mind as by three I still was not hooked up. This put us behind the eight ball for time. I was supposed to be down for radiation at 4:30, but chemo didn't end until 5:15. I hate rushing down to radiation. It is stressful enough wondering everyday if the mask is going to go on.

During my chemo session, I walked around the two chemo rooms to get a little circulation going. There was the usual cross section of patients, trending older, but in various states of wellness. There are always a few people my age or younger as well as a few gravely ill patients taking their treatments on gurneys. Monday there was a young lady. She wasn't on my side, so I didn't get to hear them ask her her birthday a dozen times, but I would have guessed she was 20, or less. She was with her mom and a friend or sibling. Dressed very trendy and texting furiously on her phone. The only things that gave her away were the black stocking cap covering her bald head and the lines running into her chemo port. The sight of her made me want to sob.

My chemo went smoothly and the mask went on. The area around the trach wound is really starting to not appreciate being cooked. It bleeds and is tender and really hurts if the mask bumps it while I am trying to wiggle my chin up just a bit higher. This is only going to get worse over the balance of the radiation and for awhile afterwards. But I knew this going in.

I am also just starting to get the attractive thickening of the mucus and the sore throat.  The sore throat is more annoying as there isn't a thing I can do about it. Since I can't swallow, there is no relief. But it isn't horrible. And, as I recall from the last time, swallowing was pretty horrific so maybe just enduring the sore throat is better.

Monday night there were brownies with dinner. Beautiful brownies. They smelled heavenly. I could not resist and tried a bite. Nope. Sweet I cannot get. It tastes like absolutely nothing. I did get a waft up from the blended brownie, but it wasn't worth the stomach ache I got from eating it so late. And sugar is an inflammatory, so maybe it just isn't worth it over all. I will admit to having fantasies about ice cream, but that is pretty much all they will be. If I can't taste it, there isn't much point to putting it in my mouth. I don't know what the feeding tube equivalent of a brain freeze is, but I don't particularly want to find out.

Tuesday was better, as it generally is after a big bag of steroids and another of benadryl. I had Physical Therapy, which always makes a wonderful difference, too. Today's radiation treatment was number 16, which means I am now in single digits. Nine more to go. Two more this week, five next week and then two more after that. I think I only have one more chemo next Monday, but we will see what Dr. B says. I am looking forward to a three day break from treatment to let everything heal up just a bit more.

I am almost through season three of Call the Midwife (thank you for the loan, Anne!) It is a good distraction, along with crocheting, books, crossword puzzles and writing letters. We have received two letters from our summer camper. The first was from the first day of camp and she wanted to know if we "mis" her. The second one was hilarious, "I am on the top bunk! I love the top bunk! I' am having fun!" Ah, to be so enthusiastic about the top bunk...

As many of you know, I have found many excellent support groups on Facebook. Ebstein's Anomaly, tube feeders, and survivors of head and neck cancer have been particularly helpful. I have received excellent advice, guidance and support from these groups. I found people who have been through exactly what I've been through and come out the other side. They have been invaluable to me.

The hard thing about these groups is that the news isn't always good. At some point, some people stop being survivors, and that can be hard to take. Hits to close to home, so to speak.

Through these groups, I have become close to Joel and Kelly. Joel had his glossectomy not long after I had mine. As a professional DJ, it was harder on him than even on me in some ways. He followed up his surgery with chemo and 36 additional radiation treatments. This was his second dance with cancer.  Today I found out that he has another biopsy positive for cancer in his neck this time. They don't know all the options yet, but like me, that list is becoming shorter. It is strange to say you love people you never met, but I can say I love this family and feel very close to them. If you could add Joel to your prayer list, or positive thoughts list, or whatever your belief system is, I would greatly appreciate it.

Cancer sucks. Those of you who ever taught with me know I have very strong feelings about the word "sucks" but in this case, I think it is justified.

Love,
Kiara