Redneck Update

The last Cisplatin treatment on 9/2 really knocked me down. It was my dad's "turn" to go with me but I persuaded my mom to go because anyone who knows him knows he couldn't sit in a chair beside me for 8 hours. He'd be making all kinds of excuses to leave or his phone would implode from overuse : ) My mom and I made spreadsheets to keep track of my medical bills and prescriptions while sitting there. When this is over I'll add it all up and post the cost. All I have to say at this point is people without insurance would already be in a panic. My cost with insurance would send most people into a panic.

The following day I was tired and my friends and coworkers Jeannine and Jill arrived. Jeannine is from Omaha and Jill from Sioux City. I had this big plan of barbecuing them steaks and watching them eat but I realized by noon that was not going to be happening so they were stuck going to the local Chinese restaurant. My department was having a meeting the next day and my mom took me by on the way to iv fluid/radiation and they showered me with gifts. Books, lotions, body wash, 5 gift cards, protein powder, clothing, headscarf, coffee cups and mugs, kleenex, hand sanitizer and a movie. It was good to see everyone. That evening Jill, being the efficient organizer that she is, put everything away for me before I thought to get a picture. In fact, I was so sick I didn't even get a picture of me with Jeannine and Jill. They stayed until Friday morning and it was so good to have them here. I was vomiting (even had some blood from my throat), exhausted and had a terrible headache. They took their turns rubbing my neck and shoulders and went to the store in search of something I might be able to hold down but to no avail. Even Pedialyte freezer pops burnt my throat. But the ice pack they got for my neck was a great help. We did have a good visit and I hated to see them go.

Friday afternoon my friends and coworkers Jennifer and Kylie came for a visit on their way home to Kansas City. I was still sick but I was happy they came by. I got another head, neck and back rub. I'll tell you, having nurses as friends is awesome!!! I only wish we all lived closer. Once again, I was so sick I didn't even think to get a picture of me with Kylie and Jennifer.

Picture really doesn't show how red it really is.

My headache finally went away on the weekend and the nausea subsided but I was terribly exhausted. I feel like I lost several days because I was in a fog. I now feel really good except for my mouth and throat of course. I have ulcers on the sides of my tongue and can still only get fluids down. I'm pretty limited to water and milk because everything else burns. I've noticed my ears are now ringing, worse at certain times than others and this is a side effect of the chemo. For some it goes away but for others it can be life-long.

Here's a list of some of the things I do each day to try to alleviate symptoms:
IV normal saline with Decadron (nausea and inflammation) and Zofran (nausea)
Rinse mouth with NeutraSal 4-10 times (mucositis)
Rinse and swallow Stanford suspension every 3 hours (mucositis)
Take pills in the morning: Magnesium (to prevent peripheral neurapathy), Celexa (depression), Colace (stool softener but can't eat so no result!) It's really hard to swallow pills.
Other meds: Liquid morphine every 3 hours as needed (pain), Fentanyl patch changed every 3 days (pain) Ativan every 8 hours as needed (nausea)
Brush teeth 4 times because I'm at risk of tooth decay and loss from the radiation and lack of saliva. Floss gently 2 times a day.

Rub Emu oil on my neck every couple of hours. My neck is bright red with some blisters from radiation burn. And I have a lovely 2" red strip at the back of my head where enough hair has fallen out to see my scalp. It' pretty ugly but it'll grow back. I am now a Redneck.

UGLY!

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