Karissa was thrilled to see us, although her first words were, "Can I come back for three weeks next year?" That took all the guilt away. I'm sure she had a much better time than she would have watching me lie on the couch. She is very tan and talked almost non-stop on the way home. I am so happy she is home. Wow, does she have a lot of energy!
Upon unpacking her things, I made a few discoveries. She managed to bring home everything she took, plus someone else's camp shirt as well. Apparently, only a thimbleful of shampoo, conditioner, and body wash is required for a three week stay. Beth's positive spin was that she probably borrowed from other people. I'll go with that, but I am still thankful that we cut her hair. I know how Karissa feels about showering.
Everything went into the wash as there was no determining what was clean and what was not. She also left the lid loose on the bug spray, which wasn't in a plastic bag, so lots of things smell like bug spray. The packing was pretty interesting. She had two toothbrushes and tooth paste just loose randomly mixed in with her bedding in the laundry bag.
Adventures in feeding continued for me Sunday night. The end of my feeding tube has two parts on it. There is a Y-port that connects to the tube. It has the larger opening and an small opening for meds. The Lopez valve inserts into the Y-port. The small opening for med has started to tear away from the rest of the Y-port. Now it is leaking. Now I have to hold it closed so it won't leak at the tear. Because feeding needs to be more complicated.
At the cancer center I sprayed blueberry smoothie all over the place. We had to work together to do the rest of it as I cannot hold the leaky port, the side port on the Lopez valve, and plunge, especially when the blueberry seeds are jamming things up. Even with both of us we had a second spray. I'm sure they weren't sorry to see me go today.
I got almost to the end of chemo today and had a trach clog. Kelly had to pull the trach for the second time today. It still feels like there is a hamster down there, but I can breathe. All the coughing made me feel horrible, so I got some Reglan on top of my Benedryl. It's a miracle I'm still awake.
Continuing our theme of how crappy can the last two treatments be... no small gowns available, only the extra huge ones that come all the way to the floor and could wrap around me three times. Then radiation is running behind. Okay fine, we'll see the doctor first. The nurse does everything, but then radiation is ready for me after all. I am very swollen. I wrestle the mask on, but it is digging into my trach wound so much I am almost crying. They pull it off and I try again. It still doesn't feel quite right and they can't get but a few clamps locked down, but lets do it.
After a couple minuted they have to come in and slide me to the left. This actually helped a lot and made the mask somewhat more comfortable. It is kind of a strange sensation having someone slide your body around while your head is locked in place and you are holding the chain hand holds that look like something right out of the Spanish Inquisition. It all is pretty surreal.
I know we are getting close to the end because of the songs. But then Renee comes on the loud speaker and tells me the machine had to reset. That means it has to rotate all the way around to its original position as well as the going back to where it was in my protocol. While this all only takes a few minutes, that is a few more minutes flat on my back on a hard table, chains in hand, head bolted down, trach would open. Some minutes are longer than others, as we all know.
But at last it is done. I have one left. One. I will bully my way through. Dr. F says everything I am experiencing is to be expected. He is very happy that I have made it all the way as he wasn't sure when we started if I would be able to do it. I'm pretty stubborn. He says people always ask how they pick the number of treatments. Then they get through their treatments and realized they couldn't handle anymore than this. Funny how they know.
I will have my one tomorrow. He says I will start to feel better in two to four weeks. My mouth should also heal in about that time. He expects my neck will take much longer, probably at least three months. Not a surprise as it is such a large wound. And it has a trach tube jamming into it all the time. And we cooked it 25 times. And poisoned it. I can't imagine why it would take a while to heal.
Angie and Hannah took Karissa with them to Angie's softball game tonight. This will be the challenge; keeping Karissa busy until I am up to speed again. Karina and Nathan are off to look at a wedding venue. I suspect this will be their initiation into "It costs HOW MUCH?" Kelly has to run to the grocery store after they get back as we are out of all the basics, including milk.
Next week Karissa will be back at day camp. Reggie comes to help out and visit. Karina will be working. Perhaps our lives will settle down a little. I know I daren't say that out loud. Like I can. There are gardening projects and crochet projects, stuff to sort and stuff to donate, plenty to do. July is nearly half over which means it is going to be back to school shopping time before you know it. Karissa actually grew and she has worked her way through almost all the hand me downs from her cousin. We may actually have to buy her clothes this year.
I was "talking" to someone on Facebook about his treatment. He had no insurance when he had his cancer. He had to pay first or no treatment. He had the higher dose of chemo than I did, as well as almost as many radiations as I had combined. Yikes. I can't even imagine.
I am always amazed by the people who work all through treatment. Or go right back to work. There was a gentleman by me today who was wrangling. His liver function was very poor, so they would not do treatment today. He cannot travel or go back to work until his treatments are completed, but each delayed chemo pushes that date back. You could hear in his voice the fear of losing his job. To add that hell when you are already fighting for your life. But I remember Kelly's dad worked right up until he went into the hospital, still often volunteering for double shifts. I consider myself a strong person, but I don't know how they do/did it.
My hair is really coming back. Strangely it is really coming back dark. I have never colored my hair before, so I'm not about to start now. Well, one time during a bit of a crisis over turning 30, but that aside, whatever color it comes back, that's what it will be. I have to retake my license picture anyway. I'll have to change my hair color and lower my weight. I'm a whole new person.
Thank you my cheerleaders, prayers, helpers, encouragers, naggers, commentors and comrades. We would not have made it this far without you. I wouldn't be feeling this well without you. I am hopeful for the future and plan to enjoy every minute of it! (probably not colonoscopies, pap smears, or select moments of having a teenager again, so to be honest I plan to enjoy most of it...)
Onward to tomorrow. They already called me and delayed my appointment to 4:50. The last time the day of my last treatment every single radiation machine went down. They sent everyone else home and canceled the rest of the day, but had the physicist come in and run my program manually. I think they were afraid I wouldn't come back for the the last one. They were probably right.
Love to you!
Kiara
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