Cancer Basics Notebook

When I was diagnosed with cancer I created a notebook. I was going back to school and the topic was cancer… my own. In a one inch, three-ring binder (I feel like such a geek right now) I put in notebook paper with notebook dividers, page protectors, and a business card sheet protector (oh yeah, I was serious). Whenever I would get bloodwork I would ask for a copy and put it in my binder. When they handed me informational one page sheets on the side effects of each chemotherapy I was on, it went in the binder. When my doctor printed out a copy of my chemotherapy protocol and a calender with a timeline of my treatement, it went in the binder. I carried it with me everywhere. I referenced it from time to time and made notes in it.

I was determined to get an A in this cancer class of mine.

If there was one thing I could give to someone who has just been diagnosed, it would be a notebook and in those first few page protected sheets, I would have the following information:

Blood Counts

  • WBC – White Blood Cell – These are the infection fighters. Your doctor needs your WBC count to be high enough in order to start chemo. If you have low WBC counts and a fever that means a trip to the ER. This is because you will need help to fight a potential infection when your WBC is too low.
  • RBC – Red Blood Cell – These are the cells that carry the hemoglobin to all of the cells in your body. The hemoglobin delivers oxygen.
  • Hgb – Hemoglobin – This carries oxygen from your lungs to your cells. This is something that you will notice if it is low. When this gets too low you feel like you have no energy and have aged to 100. When I first noticed this I was running up the stairs and my knees buckled. When my counts were below 9, my doctor would order a blood transfusion. I know this sounds scary, but I felt SO much better after my blood transfusions. One time, I wheeled my IV to the nurses station and asked for, “More blood please!” I was trying to be cute, but I seriously wanted more blood.
Ways to tell your Hgb may be too low:
  • Go to the mirror and pull down your lower eyelid. Is it white or pink? White means you are low.
  • Look at your gums. Pale? You may be low.
  • My voice became shaky when I was really low. I didn’t notice it, but my doctor heard it over the phone. I had my first blood transfusion the next day.
Ways to increase your WBC:
  • Neupogen injections may be prescribed. I had to give myself Neupogen injections in my leg for about two weeks or until my counts returned to a higher level. Benefits are you get to go back to the hospital sooner to get back to killing the cancer.

Trust Yourself

If you feel like something is wrong, speak up. You are the authority on you and intuition goes a long way.

Switch It Up

Switch arms and veins. I had a vein collapse after a little over a month. It was my “good” vein. They recommended a port. I hesitated because I didn’t want another scar, then I realized how silly that was. I LOVED my port because they didn’t have to touch my veins anymore.

Questions Are Good

Ask questions and write down the information because you never know when you will need that later and let’s face it, it’s overwhelming.

Hair…

Find a comfy cap and some wigs. Losing your hair is a sign that the chemotherapy is killing the fast growing cells, which means it’s also getting the fast growing cancer cells. I loved my cap that a friend bought for me, it was soft and comfy. Wigs get itchy and hot, but are nice to have around.

Hospital Stays

I had to stay overnight in the hospital for a week at a time when I would get my chemotherapy. I’m guessing you won’t have to, but if you do bring your own pillow and blanket. My mom had given me a chenille throw that always kept me the right temperature.

Gratitude List

Make a list of what you are grateful for and go over it every day. I was even grateful that they found the cancer so that they could kill it. You will find a great deal to be grateful for.

Visualize

Visualize the chemotherapy killing the cancer. Visualize the cancer getting smaller and smaller until it is gone. For me, it was helpful to know where the cancer was (around my heart and behind my lungs) in order to feel like I was effectively visualizing.

I’m Cancer Free

Okay, this one is going to sound crazy, but I don’t care. A relative took me to a healer. Yes, sounds strange and it was strange. The one thing I walked away with was to say, “I’m cancer free,” seven times in row. So, during my gallium scan and other tests I said these words at least a thousand times (in increments of seven, of course).

Foods to Avoid

  • Sugar
  • Dairy

You will read books that will tell you that everything causes cancer. I’m sure it does, but what you should avoid is sugar and dairy, those are the big ones because cancer will feed off of those two things. Oh, and of course don’t drink alcohol, but that is a given. So, hopefully I saved you from reading that everything is bad for you. I read that and then didn’t want to eat anything unless it was the perfect food. There never seemed to be anything good enough to eat. The flip side of that is that you want to make sure that you are eating. I definitley did have some sugar and dairy in moderation, but for the most part I chose foods that didn’t have a lot or any of those two items.

Disclaimer

I’m not a doctor, these are simply things that I learned along the way. Please do your own research and talk to your oncologist, but when you do… write it down in your notebook. 😉

5 thoughts on “Cancer Basics Notebook

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  1. This is a great summary that I have begun to share with everyone I know. I’m sure this will be very helpful to a great many people. Keep it up and thank you for sharing your story Joy.

    Liked by 1 person

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