58 E-mail: Pink Pearls of Wisdom

August 10, 2007

Last weekend Kelric and I had our picture taken for a calendar of breast cancer survivors and their children. The Houston-based photographer Alisa Murray asked calendar participants to bring along a one or two sentence quote for the calendar, a written copy of our cancer stories, and any nuggets of wisdom we would like to pass along to the newly-diagnosed. The last part is something she is thinking about collecting into a booklet to be distributed at M.D. Anderson in Houston and she is toying with the name Pink Pearls of Wisdom. I think that’s a clever name.

Well you know me. Once I got started writing I found it hard to stop. I started with one page and ended up with three.

This evening it hit me that making my contribution to the Pink Pearls of Wisdom available via e-mail and my blog might do other people some good. If you’ve read all my other posts you’ve probably heard all of this stuff before, but the project for the photographer summed things up nicely. Here is what I gave the photographer just in case you learn about someone newly diagnosed and you feel it appropriate to pass this on.

One of the “pearls” mentions the organization Wonders & Worries which is strictly an Austin agency (for now), but pretty much everything else is universal “wisdom.”

I’ll let you know when the calendar becomes available.

Love,
Angela


What does it mean to you to be a mother who survived breast cancer?
I was 36 weeks pregnant when diagnosed so life before breast cancer means life before my son was born; that makes life as a survivor twice as sweet.

My Story
When I was diagnosed in March 2006 I was 34 years old and 36 weeks pregnant. My son arrived 10 days after diagnosis and I started chemo when he was two weeks old. Through 8 rounds of dose dense chemotherapy and 33 days of radiation, my husband and I learned to take one day at a time and to be patient with one another’s exhaustion. Having a baby in the house during treatment made dealing with treatment harder because I rarely got a chance to rest properly. On the other hand, having a baby in the house during treatment made treatment easier because I had a reason to smile every day no matter how awful my body felt. I have entered my second year of survivorship and so far I’m doing great. I am not grateful at all to have had breast cancer, and yet I gained a new love for humankind because people all around me showed how wonderful and kind people can be. I wrote poetry and essays to cope with and to record my experiences. Those are posted at http://angelathepinktiger.blogspot.com. My baby is now a vivacious toddler and my husband is an even closer best friend (and an awesome father).

Pink Pearls of Wisdom for the Newly Diagnosed
Take someone with you to medical appointments. That second person will hear thing you’ll miss or forget or won’t be able to process at the time, and the conversations you’ll share later about what the doctor told you will be comforting and helpful.

Keep a list of questions to ask your doctor during your next appointment. Take this list with you to the appointment.

Ask questions until you feel comfortable with how much you understand. If your doctor already explained something and you didn’t quite get it, then ask to have it explained again. The good doctors don’t mind doing this. Treatment is tough. It goes a little smoother when you understand what is going on and why.

Find the kind of doctor you like. If you want the doctor to make all the treatment decisions for you and just tell you when and where to show up, then there are doctors like that. If you want your doctor to include you in the treatment decisions and to discuss pros and cons of different approaches, then there are doctors like that. If you don’t feel comfortable with the person in charge of your treatment, then it will be hard to be satisfied with whatever treatment you receive.

You deserve to get treatment from compassionate people who treat you with respect. You have a right to switch doctors, switch lab facilities, and/or switch cancer centers if you don’t like the way you have been treated.

It is your responsibility to review your medical bills and ask questions about thing you don’t recognize or understand. The cancer center will bill your insurance with the standard codes they always use and your insurance company will process whatever they receive. Neither party is looking out for your financial best interests so they won’t suggest that you could save money by having lab work done at a different lab or that certain things could be combined under a single co-pay. You can call your insurance company to learn the guidelines and then you can ask your doctors to work with you on where things are done. People will go out of their way to help if you are patient and polite.

Most medical facilities are willing to work out some kind of payment plan with you.

Blogs and e-mail lists are a good way of communicating with all those people who care about how you are doing. It cuts down on the phone calls where you end up explaining the same things over and over.

Ask someone to be your “volunteer coordinator” for the people who offer to help. That takes the stress off of you while organizing the assistance people are willing to provide.

When people offer to help, let them. It makes them happy to feel like they are a part of your support network by providing meals or cleaning your home or mowing your yard. It eases the strain of daily life when someone else does certain things. People often want to help but don’t know what you would value most. Tell them what you want or need. They will become woven into a tapestry of support that will color the treatment days with bright spots if you let them help you.

Some hotels offer discounts for family members who have a loved one in the nearby hospital. Some hospitals like M.D. Anderson have a list online of the hotels that offer discounts. Ask your hotel if it gives a discount.

Special clothes exist to hold the drains that come after a mastectomy.

Occasional pain is normal after your treatment ends.

Depression is normal during and after treatment. Tell your doctor. Some drugs help fight depression. Find and tell your nutritionist. Some supplements help with depression and might work for you instead of prescription medication.

Seeking professional help for depression is part of taking care of yourself. It is part of recovery. If you need a therapist, go see one and don’t feel ashamed about it. Cancer treatments are rough, and they often cause trauma and grieving. Help yourself with this phase of healing if you need the help.

For short term and long term disability, your options are wider than “all or nothing.” You can do part time disability and it is also protected under the Family Medical Leave Act.

Www.quackwatch.org is a good site for dispelling cancer myths.

The American Cancer Society (www.cancer.org) has a booklet and part of its web site dedicated to safe food preparations and eating guidelines during treatment.

Remember that our society doesn’t teach people how to get through grief or how to support someone who is grieving. Be patient with people who care but manage to step all over your feelings during this difficult time. Help them support you by telling them what you need. If you need them to listen without interrupting or soothing you, tell them that. People aren’t taught how to listen. Help them learn.

If children are involved, seek guidance from a group like Wonders & Worries (www.wondersandworries.org) so you know how to talk with them about cancer. Honor the children’s place in your family by including them in the journey towards your recovery.

The Lance Armstrong Foundation (www.livestrong.org) can put you in touch with local resources to help you along your journey through treatment and recovery.

If someone is coming from out of town to help care for you during treatment, prepare maps or instructions for finding common places such as the grocery store before your caretaker arrives. You won’t feel as much up to the stress of thinking through road directions for an out-of-towner once you are fatigued from treatment.

If you are interested in preserving your fertility after treatment, then the time to act is before treatment. Fertile Hope (www.fertilehope.org) is an organization dedicated to this end. Chemotherapy can bring early menopause, prematurely ending your reproductive options. Doctors often forget to discuss this aspect of your future life after cancer while they are focused on saving your life right after diagnosis. Ask questions. Seek answers. Make informed decisions.

You know? I think that last one bears repeating in a line all its own.

Ask questions. Seeks answers. Make informed decisions.

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