20140220-jillsavage0177 copyWhen I emceed the Hearts at Home conference Moms Night Out session while I was undergoing cancer treatment, I announced that evening that I was declaring the day “National Appreciate Your Nose Hair Day.”  Why?  Because when you go through chemotherapy you lose hair everywhere and that means nose hairs too!  Do you know that your nose hairs keep your nose from running?  I carry a tissue everywhere I go because my nose is always running these days.

If you haven’t thanked God for your nose hairs lately (or ever!) do so today. They are important!

All humor aside, we often don’t know what we don’t need to know.  Yet, it’s likely that every one of us will likely have a friend, relative, or acquaintance who walks the cancer journey at some point in time.

Today I will share a list of things I didn’t know about cancer before I had cancer.  You might never face cancer, but these would be helpful to know if you walk through cancer with someone you care about.

1) While there are standard treatments, everyone’s treatment is unique based upon the type of cancer, the stage of cancer, and their own body.  No two cancers are the same and neither are the experiences that surround them.

2) Stage of cancer indicates how much the cancer has spread.  The earlier cancer is discovered the better chance that treatment will work.

3) When you lose your hair, you lose your hair everywhere—yes….even there (can you say Brazilian wax without the pain?)  Some people lose eyebrows…mine thinned significantly, but I found this eyebrow pencil to be the best at filling it in! I did lose about half of my eye lashes. I do have friends who lost all of their eyelashes.

4) When you lose your hair, it doesn’t always completely leave you bald.  I initially shaved my head with an electric razor because the hair was coming out in handfuls and making a mess.  Eventually I shaved my head with a regular razor to get the completely bald head. I was more comfortable with a smooth head rather than a stubble head with bald spots.

5) Some chemotherapy drugs cause mouth sores.  If you drink a very icy drink while receiving the chemo (like a slushy) it shrinks the blood vessels in your mouth which helps keeps mouth sores from forming. (A nice gesture for a friend in chemo is to ask if you can bring him/her their favorite smoothie or frappuccino during their treatment!)

6) Chemotherapy can throw a woman into menopause….sometimes it’s a temporary menopause and sometimes it’s permanent (personally, at 50, I’m hoping for permanent!) However, the hot flashes have been terrible.  They are a part of the menopause.  They hit fast and if I’m home, I’m ripping off whatever layers I can.  They are miserable…quite miserable when they hit!

6) Ginger Beer has been my best defense against chemo nausea. It’s non-alcoholic like root beer, but made with ginger. The brand I liked best was Bundaberg Ginger Beer. Other ginger products like Ginger Chews candy, and Ginger Tea are also helpful.  If you want to give a thoughtful gift to a friend going through treatments that will likely cause nausea, a basket of a variety of ginger products is very helpful!

7) The American Cancer Society provides a free wig to anyone with hair loss due to cancer treatment.  Usually there is a wig bank where you can go and try on donated wigs.  I initially got a wig through the local wig bank that is located at Fox and Hounds Studio here in Bloomington, IL.  However, I made the decision to purchase a wig to better match my hair color and style.  Most health insurance companies cover wigs if the doctor writes a prescription for a “cranial prosthesis.”

8) A dietitian, found at most cancer centers, is one of the best kept secrets for dealing with side effects and general nutrition.  After Mark and I met with the dietitian, I made changes in my diet and saw an improvement in how I felt. While the service is free at my cancer center, I had to seek out an appointment and I’m so glad I did.

9) Chemotherapy causes terrible dry mouth symptoms.  Biotene toothpaste and Biotene Mouthwash were lifesavers for me. That’s another nice touch to put in a gift bag for someone going through chemo.

10) If someone has had a lymph node removal, they have limitations on repetitive actions like vacuuming and on lifting.  Offering to help carry something could be helpful. (My family teasingly reminds me that I can still vacuum with my left arm!)  This is because of the possibility of lymphedema which can happen even years after surgery.  Next week I will be fitted for a compression sleeve. This will be especially helpful for me to wear when I return to more intensive exercise, work in the garden, or return to flying for my speaking engagements.

11) Neuropathy is a painful side effect of chemotherapy.  In my case, the balls of my feet and my finger tips started feeling like I had hundreds of splinters in them. I also deal with a terrible case of twitching eyelids–both top and bottom. Sometimes it’s so bad it affects my eyesight. In my friend Christene’s case, her hands hurt so bad that she couldn’t hold a hair brush sometimes.  Unfortunately, neuropathy symptoms can continue for months or even years after treatment.

12) Some people lose their fingernails and toenails from chemo treatment.  Thankfully I didn’t, but I was aware that it was entirely possible.

13) Fatigue is a side effect most cancer patients deal with.  I found the fatigue increased with every chemo treatment. I’m told that I may continue to experience an increase of fatigue with my radiation treatments which will start around the 3rd week of April.  This is why providing meals and helping with kids, laundry, or cleaning can be such a gift to a friend going through treatment.  (It’s also helpful to know about www.CleaningForAReason.org where they will pair cancer patients up with cleaning companies who will clean for free while they are going through treatment.) 

14) The last thing someone going through treatment wants to do is exercise, but modified exercise is important (not on the days you really don’t feel well, but definitely on the tired days). I found my fatigue decreased when I got on the treadmill or went for a walk. It didn’t go away…but it did decrease.

15) Our dietitian shared with us that women who have breast cancer and chemotherapy tend to gain weight during chemo but women who have other kinds of cancer and chemotherapy tend to lose weight.  I have found that to be true for sure.  I literally put on 12 pounds in about 10 days after my first treatment.  They say it’s likely hormonal but they are not sure why the response is so different based upon different kinds of cancers.

16) While I wasn’t initially a fan of Obamacare, I am grateful that it took away the pre-existing condition issue with new insurance.  We had to change insurance in the middle of my treatment.  Neither Mark nor I have insurance through our employers so we had to purchase it through the marketplace.  I was so grateful that having a pre-existing condition did not keep me from securing health insurance.

17) More than 30% of cancer could be prevented, mainly by not using tobacco, having a healthy diet, being physically active and moderating the use of alcohol. (Source WHO) While I don’t know that my cancer could have been prevented, we’ve been changing our diets here at the Savage household to include more whole foods, more fruits and vegetables, no artificial sweeteners, less refined sugar, and reducing gluten.

18) Radiation can cause severe burns (like a bad sunburn) by the end of treatment.  Also radiation treatment of the left breast has to take into consideration risk to the heart. (My cancer was in the right breast.)

19) There is a law (The Women’s Health and Cancer Rights Act) that health insurance is required to provide coverage for reconstruction surgery for any woman who has had a mastectomy (and sometimes a lumpectomy) even at a later date.

20) Most cancer patients face fear after they are “cured.”  Every ache and pain causes you to wonder if this is a recurrence, or a new cancer.  This is why having faith and the ability to stand on the firm, unchanging foundation of Jesus Christ is so important, because life is always changing and shifting under our feet.

Finally, early detection increases survival rates…hugely! Be vigilant about checking your skin for moles that don’t look right. Don’t be afraid to go to the doctor. Get an annual physical.  Once you hit 50, schedule a colonoscopy. Ladies do a monthly breast exam and once you are 40 an annual mammogram (earlier if breast cancer runs in your family). Men, do a breast exam as well and talk to your doctor about getting a baseline PSA test in your 40’s to test for Prostrate Cancer.  You’re knowledge and care of your body is very important!

What about you? Have you or someone you love walked the cancer journey? What else would you add to this list? 

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