Chemotherapy hints

1. When I was told I had to have chemotherapy, like when I was told I had cancer, my digestive system reacted violently. Seriously, I barely made it to the bathroom.
2. It's really hard to ask the right questions when you are in shock. Write them down as you think of them, and take the list with you to the doctor. Date the paper and write down what he says.
3. Lots of people tried to talk me out of having Chemotherapy, and it was tempting! But, after much prayer, I felt it was the right thing to do, so I did it.
4. My cocktail consisted of 6 rounds of Carboplatin, Taxotere, and Herceptin, every 21 days. They all have side effects. Managing the side effects is your job.
5. I made a notebook with 21 pages, one for each day of the chemo round. On the left side I typed "Chemo 1", then 2 through 6. Every day I wrote down details of my symptoms and how I treated them. That way I knew what to expect, what worked, and what progress I was making.
6. Seriously, my chemo cocktail gave me chemo brain. I couldn't remember calendar items and I couldn't multi-task. It was like being in a fog.
7. I got a little calendar and marked on it what was coming and when my doctor appointments were. I also crossed off days that I had lived through.
8. After my chemo, I made a 'chore-chart', which I wish I had done during chemo to give me a sense of accomplishment.  I did it on Microsoft Excel. On the left column I put EVERYTHING, including brushing my teeth, taking my pill, getting dressed - EVERYTHING, because those little things are vital. If you forget one, you suffer. (Your brain is on vacation!) And doing them is an accomplishment.
Across the top row, I typed each day of the week. The empty spaces are a grid.
Every morning I circle the items that I want to do that day in each cell. So, there are essential items on the left column and 'nice to do' items as well that don't always get circled.
Some days, if you only eat, drink water, and brush your teeth, you've really done something.
9. I also made a shopping list, and just circle the items that I need from each store. That saved thinking too!
10. They give you steroids (I had 12 per round!!!!) so day 21, 1, and 2, you are taking them. You are hyper. Those are the days to clean and shop and take sleeping pills at night.
11. Then on day 3 you totally and complete melt down crash -- for days. Don't plan anything. Just bask in the love of the Lord, or escape to fiction. I was so weak that listening to audio books was my level of activity. I enjoyed them too! I listened to all of Harry Potter 2X. (steroids make your eyes blurry and watery, so it's hard to read or watch movies)
12. Take the pills they give you for symptoms. They have them for EVERYTHING - ask for them. I took nausea pills every 6 hours, sleeping pills- 2 kinds, acid reflux pills, diarrhea pills, and had some on hand for other things like constipation. Why suffer?
13. Write down what pills you take and when. Chemo brain won't remember!
14. Get a bed wedge -12 inches is best, from a medical supply, or online. When you have acid reflux, it's nice to be elevated. It's nice for doing things in bed too.
15. Have an alternative comfy place to be when you want people or to be near the kitchen.
16. Water tastes awful. The only thing I could drink was 365 bottled spring water, 1 gallon size, from Whole Foods, or the Spring water in bottles that they sell at Aldi. Some brands are yukky to me.
Fruit juice is too intense, or too acidic. The only other thing I found was Pero, a grain drink. (see post on it)
If you drink a lot in the morning and early afternoon, and don't drink a lot in the evening, you will get a better night's sleep.
17. You are going to feel like you've dried up like a prune. Drink, drink, drink. Eat soups and soupy things. I actually keep a chart of how much I drink.
18. Your skin and gums are going to be thin, or dry and pruny, and hyper sensitive and times during the cycle. Get a soft toothbrush. Flossing will hurt your fingers and could cause gum bleeding. Try using GUM soft pics.
Vitamin E oil has helped. I've rubbed it on my lips and inside my nose. A good skin cream feels lovely on hands and feet too.
19. When your skin feels really thin and sensitive for a few days of the round, even holding a laptop in bed will be hard. Find a laptop table, or see if there is a tablet and holder that your are comfortable working on.
20. Keep in touch with people. Let them know how you are progressing. Share your faith. Your friends and family will pray for you, cheer you on, and share their own experiences with cancer. The fact that they have survived will give you hope. I regularly post an update on my condition on Facebook. Many friends have told me how much that helps them to be informed on my progress.
Allow people to do things for you. Tell your church and other organizations that it is OK to bring food and to come in a clean your house when you are very weak. You can serve them back by being thankful and showing them a good attitude.
21. Your #1 job is to take care of yourself. We are used to putting others first, and you will get to do that again, but you can't help anyone with a broken down body. Allow yourself time to cure that. It will take a while, and that is OK. God has purposes in patience and suffering too. Take care of your spirit by reading inspirational materials and your body by feeding it super foods, and exercise when you are able.
22. Exercise. I have always hated exercise, but it is VITAL when you are in chemo. As my cocktail continued, it stopped my cells from dividing. That included red blood cells which carry oxygen to your cells. The ONLY way to increase that oxygen is to exercise. So, I exercise. Right now I am walking around the block twice a day, and doing muscle toning once a day. On days you don't have the energy to do that much, walk as far as you can down the street, one house holding onto someone. Or, back and forth inside your house. Get moving!
Going outside of the house opens you up to the larger world too.
I read somewhere that magnesium stimulates the growth of red blood cells, so I checked my vitamins and added a magnesium supplement to my regimen. After I did that my red blood cell count stopped it's free fall, so maybe it helped.
Ask for a printout of your blood counts every 3 weeks.
23. The other cells that stop dividing are white blood cells. They protect you from germs. The day after my chemo infusion, I was given a shot to stimulate the growth of white blood cells. They say they are manufactured in the large bones, which will of course ache because of the shot.
That means that you have to become a germ freak!!! Every morning I disinfected the kitchen and made everyone that came into the kitchen wash their hands. I was careful about touching my mouth.
No salads in plastic bags. No eating at buffets. Stay away from coughing people. Sit at the front of church so your get the sacrament first. Wash your salads in disinfectant as if you are in a foreign country, or just cook them.
24. Toilet issues: Your skin is sensitive, so use super soft TP. Also, your urine is toxic to others. Flush 2X. I claimed one of the toilets in our home just for me. It's the only one I use.
And who wants toxic urine sitting on their skin? Baby wipes were too harsh. I made my own baby wipes using Scott Shop Towels from Sams, cut into quarters. Put them in a disposable plastic food storage container that seals tight.  First I add  hot water and a few drops of Vitamin E oil - oh, about 1/4 of the volume of the stack of quartered towels. They work great!
25. Sex - You are toxic. Protect your spouse with condoms. Abstain or get creative when your skin is hyper sensitive.
26. Insomnia. I use wax ear plugs. Sometimes I have to fall asleep while listening to fiction. If you wake up in the middle of the night, try not to lay there and worry. I try not to take any more sleeping pills than I have to, but sometimes you have to. Ask the doctor how to make them stretch more than 6 hours.
Get a bed that you can't feel your spouse bounce on! And, one that does not creak.
27. About the end of my first chemo, my hair began to fall out. For a while I put up with this, then held it in place with a hat or scarf. But the day came when I knew it was time to shave it off if I didn't want to be cleaning up hair all over the house. Amazingly, that was the morning my friend brought me a whole bag of hats she had gathered from people in our church!!! I got my husband to do the cutting and shaving. Looking back on it, I now wish I had buzzed it to about 1/2" in length because the stubbles are like sandpaper.
Each chemo round on day #10. More stubbles would fall out. But it is growing back gangbusters now that my chemo is over! And it feels soft as kitten fur.
28. Have fun being bald!!! And if you are bald at Halloween, really enjoy being bald! I got to be bald all summer, which felt so cool and awesome. Buy a pile of large cotton scarves in colors that go with your clothes. Try Walmart. Learn to tie the scarves. Lots of African Americans use tied scarves. I've actually gone up to them in Walmart to ask how they tie them. Awesome! There are online tutorials too. I mostly just experiment.
Buy hats and make sure they cover all of your hair line. Hats with wide brims are really fun, but for everyday use, the brim is in the way.
Wigs are hot. They feel like a bun warmer on your head. And, the synthetic hair wigs are so flammable that you shouldn't wear them when cooking. I only wear my wig at church so that I don't provide a distraction. Sometimes, I wear a wig when I don't want to be conspicuous too. It's worth the heat.
Now, if I were bald in winter....
29. I was told by my doctor to avoid the sun, so I do. I wear long sleeved shirts in summer and only walk outside early and late. And, I'm too tired to swim.
30. Every mouthful of food counts, so I went on a super healthy food diet. All the doctors are pleased with this. Most people gain weight on chemo, but I lost 10 lbs. The rest of this blog is about my food choices - so enjoy!