First off, Radiation is easier than chemotherapy; in so many ways. Everyone will tell you this, but it’s true.  When you first get started they are going to have you come for a “fitting” with the machines. Depending on where your cancer is they might make you a mask to keep your head still and in the correct position (head or neck cancers). It’s all about positioning and making sure everyday of treatment is exactly the same. Because I had breast cancer they gave me tiny tiny blue tattoos in 3 different places on my chest and bottom of my neck. They are really hard to find now, but if I look hard I can find them.

The whole appointment might take an hour because you will see the radiation oncologist or the nurse before your appointment and then it takes time to change into an examination gown and then change back into your street clothes. My actual treatment time or as I like to call it “nuking” was about 20 minutes long. Some people were much faster, some people were much longer it just depends on where your cancer is and how hard it is to position you. And all you have to do for radiation- is just be very very still and listen to the technicians and do what they tell you. Easy. Except I had to do it everyday, Monday -Friday for 35 treatments- and you get physically tired from radiation and emotionally tired of always going to cancer treatment. But the techs try to make it as pleasant as possible, they were warm carrying people just like the chemo nurses. A special group of people who you will get attached to and learn about their families and their goals. I was going through a tough transition at work and they were really great listeners. So after your “nuking”, you get dressed and then go about your day. It’s not like chemo where you may be extremely nausea and sick- Radiation does do a number on your energy level, but I will take that over chemo any day.

And the burning of the skin. I’s 4 years later and I can still see my “tan” lines. I am just a little darker and redder on that side. It’s all about moisturize, moisturize, moisturize when your undergoing radiation. I was lucky my hospital gave me radiation cremes to take home with me to use. (one less errand to run) But they can be purchased online or in medical supply stores. They are pretty readily available so that is why I don’t carry them here at CancerVictory. I wore my favorite old cotton t-shirts with no tags during that time. I couldn’t wear a bra it was just too much on my skin- but you do what’s comfortable. I thought I ruined those t-shirts but eventually the stains from the cremes came out of them. I had a “special” treatment that I got from my acupuncturist at the time to help put off the actual burning. I will fill you in on what that treatment was on a later post.

So there you have it- that is what going to radiation is like. Tiring but do-able.

So this is my background as I was listening to a recent interview on Fresh Air On NPR. (National Public Radio) Teri Gross was interviewing Florence Williams, Author ofBreasts; The Natural and Unnatural History

Since being a breast cancer survivor, and a double mastectomy patient- I sort of avoid lots of unnecessary discussions about breasts unless it’s laughing with my girls (survivors) about what we went through. But this interview really grabbed my attention. Basically the author was going through how our breasts are fatty tissue and fatty tissue absorbs chemicals easily that our bodies come in contact with. And there are a ton of chemicals that are allowed in the plastics we use, the receipts that we touch, the flame-retardants on our furniture and even in our canned food. If your a reader of my blog- you know that I first found out about BPA in our canned foods and store receipts  at the Breast Cancer conference I went to in New Orleans. BPA is a form of synthetic estrogen- what it’s doing in our food supply and things we touch on a daily basis -I’ll never know. But what this author broke down for me is how our bodies react to those chemicals and how easily they get absorbed by adults, but especially by children. It’s why girls are having their periods sooner and why thyroid cancer is an epidemic.

So it turns out – even though I have the gene, all of these chemicals that were common practice when I was growing up probably accelerated my cancer growth. And even though my Grandmother was nowhere near healthy she didn’t develop cancer until her 80′s because most of her life was “pre-chemical”  and non-intentionally “organic”. Back in 1921 when she was born- chemicals and plastics as we know them didn’t exist.

So I am going to shout from the roof tops until everyone I know who is a parent or a woman knows what kind of chemicals are out there and what they do to our bodies. Take 41 minutes and listen to this interview on NPR. You’ll be glad you did. Save the Boobies!

And the second organization I want to mention- is Heaps of Hope, started by Holly Walton, a local ma cancer patient, she underwent treatment around the same time I did, but instead of starting CancerVictory.com she started Heaps of Hope. It’s a non-profit that helps women undergoing cancer treatment pay their co-pays and also provides grocery store gift cards. 100% of all money donated go to cancer patients. Holly uses her day job to pay for expenses like postage etc. If you wanted to donate to a worthy cause and know your money would really help someone who needed it- this would be a great charity. Cancer patients have to be vetted by an application process or by a recommendation from a social worker.  Contact Holly Holly@HeapsOfHope.org to apply or donate on Heaps of Hope website.

For a real in-depth tips & advice from survivors who have walked this path check out my tips section under chemotherapy. Tips from Survivors/Chemotherapy

Here is what I wish someone would have told me before my first chemo treatment…

This will take ALL day. It takes WAY longer than anyone plans- so a 4-5 hour treatment can turn into 8 hours.
You’ll sit in a chair and wait a lot- wait for the IV bag to empty, wait for the nurses, wait for the doctor- LOTS OF WAITING!!!
You’ll be surrounded by the most caring individuals in the world- oncology nurses! They are amazingly kind and caring- I haven’t heard a bad story nor did I ever have a bad experience. They will help you through this- so you can relax and trust them. But ask any questions you may have- and always advocate for yourself!
You are going to be watched like a hawk to make sure you don’t have any reactions, especially the first time.
Your going to see the oncologist before you get hooked up to the IV’s.

Take you anti-nausea drugs as instructed! Try not to miss a dose- with all my charts and lists I still forgot to take medications a couple of times- or to numb my port-a-cath before my treatment with lidocaine. It wasn’t fun- but I survived.

Ask the oncologist for medication to help you sleep- it’s a tough thing your going through- you may need a little help temporarily to switch off your brain.
Chemo is a series of IV bags hooked up to you. You’ll be in a some sort of chair that reclines.
Most of a chemo treatment is boring. Once you see the doctor.. it’s downhill from there on the excitement meter. And that’s ok- right?
So don’t bring anyone with you who is fidgety and can’t sit still for a long period of time.

Here are some tips for What to Bring to chemo and if you want to you can find a free Chemo Calendar to use at guide2chemo.com to keep track of appointments and medications or at mymedschedule.com you can keep track of just your medications. The nurses may do this for you but if they don’t you can make a schedule at chemo, with all of that time you have on your hands!

I am a cancer survivor and lost my mother to cancer. A dear friend has recently been judgmental about the fact that I use humor to cope. She disagrees that laughter is the best medicine and has accused me of thinking cancer is funny. I am so hurt that she would judge me. I do know cancer is very serious and affects many people, but the way I deal with it is my business, as it is my journey. Please let me know what to say.  D.M. in Westwood, MA

My friend replied with this…..We are a group of 135 survivors in the Greater Boston area, so our opinion is valid in this case.  D.M is absolutely right in how she handles her cancer.  Her friend should be sensitive to the fact that she is handling her situation in a healthy, positive way.  It does not diminish the severity, it just helps her cope an move on.  No matter how loving and supportive your friends and family are, they do not understand fully what the patient is dealing with.  They mean well and we appreciate it.  But we, as survivors, have to deal with it alone, in a manner of speaking.  Our members joke about cancer all the time.  It empowers us.  Please feel free to share my email with D.M., Linda from Survivors by the Sea

This exact circumstance happened to me. This angered me so much when I was going through chemo. My boss at the time actually pulled me aside to tell me that my jokes and sense of humor was making people uncomfortable at work!! Now just to give you a frame of reference- I would make the occasional joke about being bald or a wig joke- nothing major and I definitely wasn’t standing around being a stand-up comedian all day. But when my boss told me that – I was just aghast that she would say something like that. I was trying to make them More comfortable by joking about it and they took it the wrong way. If I didn’t make jokes about the side affects and the cancer treatment- what should I have been doing? crying? I guess they would have rather seen me cry. But they did see me cry- who wants to be the one that everyone feels sorry for everyday? I learned a very important lesson that day- that co-workers who are sympathetic for the flu or a cold are not necessarily going to be sympathetic for the long haul, for a 6-9 months of going through cancer treatment. They don’t get it at all. All they had to do was laugh at my jokes to be supportive- I was the one going through the actual cancer treatment. Couldn’t they put aside their needs for just a little bit?

Joking about cancer is so vital to having a healthy state of mind. “Cancer is temporary.” (also from my brilliant friend Linda) We are not the cancer, we are so much more than that. (and just as an aside- like everyone I have lost people to cancer) Like Linda said – joking about cancer – empowers us. And if wasn’t for my awesome support group and family who can laugh about all the crazy shit that happens during treatment- I would have been overcome with the weight of such a battle. So if anyone ever tells you to stops joking about cancer- and your the one going through it- tell them to read this!

For the last couple of months we have been working on a whole new website, that is easier to navigate for customers, and easier for me to update. But I have also been hard at work finding new products- like temporary nipple tattoos, scarves that are actually drain holders and comfortable post surgical shirts that hide your drains and help you feel a little more human.

Along with the new products, there is about 10 pages of tips & advice from survivors to cancer patients on how to get through all of this. I felt we needed to expand our tips & advice section. Our goal going forward is to continue to find innovative products that are useful as well as expand our tips & advice section to help with additional forms of cancer other than breast.

“Real” wigs are hot, heavy, expensive and need to be cleaned every couple of days.  You want the synthetic ones- they don’t need to be washed often, they are light and breathable and can be styled easily and hold their style. I was surprised when I found this out- I always thought real was better. And why were people donating hair to charities all these years for cancer patients, when a synthetic is better? It makes people feel good to donate their locks I guess.

I highly recommend you get a wig before you lose your hair so the wig stylist can match your color and cut. A very good wig stylist will take great pains to match your color and will style it for you. Usually wigs don’t look that good out of a box, they have to be styled just like your hair.  And they can stretch your wig if it is too tight. All these things I learned from Gail, the Wig stylist at The Caring Place at the new cancer center for Winchester Hospital on Washington St in Woburn, MA. Feel free to call her (781-765-5000)  if you ever need her services- she is awesome at what she does!

Long legs, long arms and hair that can swing back and forth- Good Wacking!

The Dammit Doll Poem

When you want to kick the desk or throw the phone and shout,
Here’s a little dammit doll you cannot do without,
Just grasp it firmly by the legs, and find a place to slam it,
And as you whack it’s stuffing out, yell,
dammit, dammit, dammit!