Random Ramblings

For those of you who read here for updates on Alicia, I'll get that out of the way first. She has her final radiation treatment today. She is home with a fanny pack of IV meds so things have been fairly good. A couple weeks from now, she will officially be at the bottom and ready to start climbing back to the top.

Bo will be 6 months on Saturday. He is "crawling", and apparently he is quite innovative 'cause I have never seen a kid take the same approach to mobility that he is using.

Last night I trusted Riley to do her homework in her bedroom with the TV on. And it actually worked out! She had a perfectly completed worksheet. I am very proud.

While making homemade hashbrowns last night I accomplished a lifelong goal, I got the whole skillet crispy and flipped it whole. I was very excited.

Davis is still proving trustworthy with his Legos. Another thing I am super proud of since he can be a bit of a tornado. He has kept the kits together and picks them up after each time he plays with them.

Riley's school had a Chili Supper and Carnival last Friday. The kids had a blast. We really appreciated the school employees and parents who made the event successful. A special shoutout to the boy/cub scouts who were helping in the cafeteria.

Later this week I have meetings in Palymra/Hannibal/Other Rural North East towns. Other people have meetings in cities, we have to find the most country places we can for meetings.

Happy Fall!

Alicia Update

Alicia is back home. They have her refreshed and ready to tackle a few days of fighting through this routine at home. It is expected that she will need to be hospitalized at least once, if not two or three more times. Just all part of the process.

She has twelve radiation treatments left! They way the radiation works, she doesn't walk out of that final appointment and the body starts healing. Rather the radiation continues to "cook" the cells for weeks after the final dose. It will take time, she will still be fighting the pain and other side effects of the treatments up to a month after they are done. But the more they can tear her down now, the stronger she will be rebuilt.

I will say, I knew that she would be in pain. I have done my research and thought I knew what to expect, how to support her, what issues may come up. And some of the process has been worse than I imagined, while others are not so bad. The burns on her neck aren't as bad as I had prepared. Her nausea is much worse. Actual everything is much more wave-like than I previously realized. A wave of feeling good can carry her pretty far. A wave of pain or sickness can really drag her down, and the higher the wave of bad the harder it is for her to swim to the top before the next wave takes her over again. That's when she has learned to ask for help. I still can't believe how mentally and physically strong she is; and that makes seeing her in pain so much worse. There is more I want to say, but I don't have the right words today.

Thanks again to everyone for all your thoughts and prayers.
If you have any questions let me know!
Sarah

Hospital stay 2

Well, I'm typing this update from Alicia's hospital room. She was admitted yesterday morning to try and regain control over the pain and nausea. Alicia is still hanging on knowing that the end is in sight. She did her 20th radiation treatment today and has 15 to go, so that has been a boost.
She wants me to make sure that everyone knows the reason she is in the hospital isn't the cancer getting to her, it is the cancer treatments kicking her butt. And she feels better here than anywhere (the meds are better too).

All of the offers of service and help are more than appreciated, and right now Alicia is most looking forward to hanging out and having some fun once this is all over.

I'll let everyone know when she heads home.
Sarah

FYI

Alicia went home yesterday afternoon.  She is more rested and better medicated than a few days ago,so she is doing pretty well. As she said yesterday, "You don't get a badge for going through treatments without pain meds".

Thanks to everyone for your thoughts, prayers, offers of help and caring.

She'll probably be mad that I posted this...

Alicia is working through some issues right now. While her throat is not swollen, her mouth is (from some wickedly bad thrush) and that has her in pain. Trying to balance her need for nutrition, pain management and comfort has become a priority this week. She is in the hospital, as that is the best place for the doctors to work out all the kinks of her meds and such. She is still leaving the hospital to do radiation and that will stay on schedule. I tell you that, so that no one starts envisioning her curled up on a hospital bed unable to function. She has trouble talking (dry mouth, thrush, and a swollen tongue) but she looks great. A week from today she will be more than halfway through with the radiation which will be a nice milestone. Her days at the hospital look a lot like her days at home, lots of sleep and trashy TV. And keep your Facebook posts interesting, ‘cause she reads that a lot too.


So, once she feels well rested and the docs feel like her med combinations are all correct, she’ll head home.

And a minor victory for her: her hair is growing back!

It's Elementary

Next week I have a big deadline coming up. It’s something I’ve been planning for years, something that I have known about and been looking forward to, and next week it will be here. I have always told myself that by that time my kids started elementary school I would be organized. Well, in 6 days Riley starts Kindergarten. So that means I have 6 days to get organized. To know where things are in my home. To remember makeup everyday (yes, I often forget to put makeup on). To know how to get pesky stains out of the laundry (full disclosure: I don’t do any of the laundry in the house). To have a menu plan and with well-rounded nutritious options for everyday of the week. To know how to make adorable crafts for every holiday that will delight the kiddies and teachers alike. To have a household calendar with all of the family’s comings and goings posted for all to see so that no detail is overlooked. To notice the stain on my shirt before I leave the house. To notice that the kids have on mismatched socks before bedtime. To start feeding the kids breakfast. To have a process for sorting the mail, paying the bills and those other office-type tasks. To have a system for the kids to be able to match their own outfits. To get organized.


I have 6 days. Shouldn’t be too hard, right? I mean, just because I am 30, and have been a mother for 6 years, and I have never been capable of any of the above tasks doesn’t mean I’m not going to be able to overcome all of those obstacles in 6 days, does it?

If you see me crying next Thursday, it isn’t because my daughter started kindergarten. No, it’s probably because I don’t have makeup on, wearing a stained shirt, unable to find my keys on the day I was supposed to start being organized.

Radiation

Well, the next phase of treatment is here. Alicia will begin radiation tomorrow, along with the new chemo treatment. Her radiation will be 35 treatments and the chemo will be once weekly during those seven weeks.


All of the biopsy samples from a couple weeks ago were negative.

The feeding tube, while a bit uncomfortable and somewhat unpleasant, is in good shape.

While chemo was certainly difficult, that was honestly the easier part of the treatment plan. I don’t want to put words in Alicia’s mouth, and I mostly try to stick to the facts in this blog, but the radiation will be quite hellish.

I’ll attempt to explain what they are doing: First, radiation is the standard of care for any cancer of the neck or throat, so this isn’t something that most doctors would consider optional. The type of radiation they are using is external-beam radiation (which means they are literally pointing a beam of radiation at the target area). Radiation works by damaging the DNA of the abnormal or unhealthy cells. Sometimes this action occurs because of the radiation itself altering the cell, and sometimes a free radical forms and creates the damage to the DNA in that way. One of the reasons that side-effects occur is because while the radiation is creating a change to the “bad” cells it can also damage the “good” cells. This is a calculated risk and is done within the parameters of how much radiation any one part of the body can tolerate. To insure that the correct area is targeted each treatment, a mold is made. This mold can also protect the neighboring tissue areas that they do not want to be affected. Each treatment the radiation machine (called LINAC) will aim the stream of particles at the precise area and angle where it has been determined to be most effective. This type of radiation does not make her radioactive (there are some radiation therapies where they inject or ingest the radioactive materials and those are the ones that make the patient radioactive). There are a long (I mean really long) list of side effects for radiation therapy. The big ones are moderate to severe burning (somewhere between the worst sunburn you have ever seen and a chemical burn), nausea, loss of salivary gland function, and extreme fatigue. The burn becomes progressively worse over the course of treatment. Obviously of great concern is the fact that most people become unable to eat or drink during this time. That is why Alicia had the feeding tube placed. It is more likely than not, that before the radiation is over she will be taking all fluids and nutrition via tube as oral consumption will be physically impossible.

By my calculations the final treatment will be around September 26.

If you have questions about any of the process or procedures please ask me. I will be glad to explain. I hope that I didn’t make all of this more confusing.

Thank you all for you continued support and prayers for Alicia!