Wednesday, July 1, 2009

A Day in the Life of Sue

I thought you might like a glimpse into what my days are like. They are mostly filled with attempts to prevent or overcome the side effects of the radiation. Now I know why most cancer patients lose their hair - because they don't have the time to fuss with it after all of the things they need to do to survive chemo and radiation!

Morning:
1. The moment I wake up I am usually in pain so I take my pain medication right away.
2. My nose is also very stuffy and sore so first I do a saline rinse to clean out my sinuses.
3. Then with a Q-tip I rub Aquaphor in my nose to keep it as moist as possible. Right now it is very sore and irritated.
4. My eye is getting very dry and irritated so I place Liquid Tears eye drops in my eye.
5. I take my other medications: Zofran (nausea), Protonix (heartburn), Synthroid (for my hypothyrodism), Claritin, and stool softener to prevent constipation from all of the pain medications.
6. Apply Aloe to my face and neck to prevent skin deterioration.
7. Rinse my mouth with a salt and baking soda solution.
8. Rinse my mouth with a steroid solution to help the sores in my mouth. Yesterday the doctor said they were among the worst they have seen.
8. Attempt to eat something solid by mouth to keep my swallowing muscles active. This usually means yogurt or something soft.
9. Dump one can of Ensure Plus into my feeding tube.
10. Apply Lidocane to the sores in mouth to temporarily take away the pain.
11. Give myself a Lovenox (blood thinner) shot in my stomach.

Mid Morning:
1. Pain medication is starting to wear off so take another dose.
2. My nose is stuffy and sore again so I use a saline spray and try to clean out my nose as much as possible. Reapply the Aquaphor.
3. Dump another can of Ensure Plus into my feeding tube.

Lunch time:
1. Apply Lidocane to the sores in my mouth so that eating lunch will be a little easier.
2. Attempt to eat something solid again.
3. Use nasal saline spray and apply Aquaphor to my nose again.
4. Rinse with salt and soda solution again.
5. Rinse with steroid solution again.

Mid afternoon:
1. Take pain medication again.
2. Leave at 1:45 to go to radiation.
3. Get radiation therapy at 2:30
4. Arrive back home at 3:30
5. Dump another can of Ensure Plus into my feeding tube.
6. Take another dose of Zofran.

Dinner:
1. Rinse with salt and soda solution again.
2. Rinse with steroid solution again.
3. Apply Lidocane to mouth sores so that eating dinner will be easier.
4. Attempt to eat something solid by mouth.
5. Dump another can of Ensure Plus into my feeding tube.

Bedtime:
1. Take pain medication again.
2. Take another dose of Protonix, Zofran and stool softener.
3. Give myself another shot of Lovenox.
4. Do another sinus rinse.
5. Apply Aquaphor to the inside of my nose.
6. Do another salt and soda rinse.
7. Do another steroid rinse.
8. Brush my teeth and floss.
9. Brush with fluoride. (These two steps are important to protect my teeth. Patients going through radiation can easily get cavities)
10. Place Liquid Tears eye drops in my eye again.
11. Apply aloe to my skin again.

In addition to the above cares, I will now be giving myself IV fluids at home. It will start at 3 days a week and will eventually lead to every day IV fluids. It is getting harder and harder to keep drinking a lot of water. The nurse will be coming to day to show me how to do it.

Things have been going OK this week. It is getting tough to manage the sores in my mouth. The doctors have been giving me every possible solution they know of to help them heal but nothing seems to work. My Radiation Oncologist gave me the steroid rinse and I am hoping that will be an answer. Time will tell. Thank goodness for feeding tubes!

Please pray for the sores in my mouth to get better or to a level that is manageable!

3 comments:

Connie said...

Prayers have been said, are being said and will continue to be said for you, Sue...for healing of the mouth sores and for the faith that this is only a temporary journey to full recovery for you.
Keep the faith, my dear.
connie stephens

donna said...

Dear Sue: I'm having such a time responding to your emails. I'm hoping it works this time. You are so often in my thoughts and prayers. PRESS ON has been running through my head since hearing it on your site. It creates such a meditative mood, prompting me to pray specifically and intensely for what you are going through at the moment of listening. You are so loved and respected, Sue, for your sweet spirit through it all. You are amazing, reflecting Jesus to all who read. Thank you for how God is working in MY life because of YOUR life. Donna Lundborg

Anonymous said...

Always know that you are in our hearts and our thoughts and our prayers. We are here if you need us, for anything at all. Believe Sue, believe in yourself and in your God. You have less time ahead of you now, you are on the downhill side of this journey.

Susan Thomas