Health Leader - Mary's IBC Survival Guide

Mary's IBC Survival Guide

Before diagnosis: if it's on the breast, go see your doctor and then don't be embarrassed to seek a second opinion. My own doctors scheduled me for my second opinion and it was the smartest thing I did.
After diagnosis: beyond baseline information, avoid the Internet. I was an addict. The minute the family went to bed, I was surfing the Net, looking for good outcomes. All I found were stories by widowers who had lost their wives. Not a single survivor wrote in. I became hopeless. When I asked my doctors why no survivors logged on to these sites, they said because survivors are out living their lives!
Don’t let treatment scare you into doing nothing. My medications to manage side effects were outstanding. I never vomited. When I grew tired, I rested. But, I lived my life and surrounded myself with the people I loved.
On hair: I have terrible hair. Thin, colorless. I never thought I’d miss it that much. I was more interested in not dying. But, a friend of mine collected a bit in a bottle when it began to fall out. I held that little bottle in my hand every day of my treatments. It got me through the rough patches.
On body hair: Loss of all the other hair took awhile. You forget about that. Then one day, you look in the mirror and you have no eyebrows or pubic hair. For some reason, that was harder for me than anything. Remember, it will grow back.
On wigs: I went for the expensive natural-hair wig that was styled and created to look exactly like my own hair. What I didn’t realize was that everything else would change, too: skin tone, eye lashes. I found that it made me look sicker. I ditched it for the cheap wig and wore it every day.
Freedom of speech: nope. You actually become more protective of those around you, downplaying your illness and trying to keep loved ones hopeful. So, you need to find a place and a person you can vent to. For me, it was my husband at Burger King. It became our secret place where we could say anything.
On faith: I found faith that I didn’t know I had. I also found (as a Catholic) that the rosary was of great comfort to me. When my mind was going in a million directions at once, the simple ritual of working the rosary in my hands stabilized me. Find something you can hold and draw meaning from. It’s powerful.
Educate your doctors: many cases of IBC are missed because it appears first as a dermatological problem or soft tissue infection. Since it is a rarer form of cancer, there’s a high possibility that most doctors, other than oncologists, have never even seen a case of it. But, also remember, a breast can have a simple infection. Don’t panic, just get a second opinion.
Number One piece of advice: if you find yourself in cancer treatment, read Harry Potter, the whole series. You’ll laugh till you cry and find meaning in these wonderful books. If possible, read them with someone you love, out loud.

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Last Updated: 10-18-2006

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Health Tip:

Packing Bag Lunches Safely

If you pack lunches for your child to take to school, be careful that you do not accidentally expose them to foodborne illness.

Bagged lunches, especially those containing perishable foods, need to be packed and handled properly in order to keep the food safe. In general, perishable foods should not be left at room temperature for more than two hours. If left out too long, the temperature of the food can enter the danger zone where bacteria grow most rapidly, which is between 40 and 140 degrees Fahrenheit.

Below are some tips to help families pack bagged lunches safely:

Pack foods that are nonperishable and won't require refrigeration.
If you do pack perishable foods such as luncheon meats or prepackaged cheese and crackers, include a frozen gel pack or a frozen juice carton with the food in an insulated lunch bag or box.
Pack only the amount of perishable food that your child can eat at lunch.
Preparing lunches the night before and storing them in the refrigerator until you pack your child's lunchbox in the morning can help keep food cold longer the next day.
Don't reuse packaging materials such as paper or plastic bags, aluminum foil, etc. as they can contaminate other foods and cause foodborne illness. Have your child discard all used food packaging and paper bags after lunch.

Before eating lunch or snacks at school, make sure your child washes his or her hands with soap and warm water for at least 20 seconds. If your child's school does not have a handwashing program in place, encourage them to adopt a such a program, as handwashing is one of the best ways kids and parents can protect health and stop the spread of germs.