Just like many cancer patients I wonder How I got cancer, and Why I had cancer at such an early age. (33) Was it because I ate the fish I caught out of the Staten Island harbor as a kid? Was it all of fumes I breathed-in living in a city? Is it because I was over weight? I easily get stressed out? Even after I was told I had the BRAC gene mutation, I still wondered why my grandmother didn’t get breast cancer until age 80 and then again at 85. Why did it take her a whole lifetime to develop a cancer that she had 85% chance of getting and why did I get it at age 33? Grandma was no health advocate- she had heart disease, severe diabetes, was overweight her whole life- she did everything to promote cancer- yet she didn’t get something she was per-dispositioned to until her 80’s.
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!
So there are a LOT of Breast Cancer non-profits and organizations out there but here are 2 local Massachusetts groups that I have personal experience with and that really give practical help to women going through cancer treatment. The Ellie Fund really helped us when I couldn’t work as much because of chemo & radiation treatments and money was tight. They gave us prepared but frozen ready to heat meals and supermarket gift cards to help pay for food. Email [email protected] to find out more about getting help while your going through breast cancer treatment or if you want to donate you can go to the Ellie Fund website. This organization is stellar and really fulfills a big need.
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 [email protected] to apply or donate on Heaps of Hope website.
In February I went to the Breast Cancer Conference and I missed this workshop on Chemo brain. I just listened to it, and it was well worth 50 minutes of my time. It was a great presentation by Dr. Pamela Joyce Shapiro, who not only explained why we get chemo brain, and all of the causes; fatigue, stress, chemicals in chemo, depression, menopause, lack of estrogen, but also what we can do about it. She went through some of the things that can help cognitive function. After listening to this, I don’t feel so alone. I HAVE aged, and just because I look young doesn’t mean my brain is young anymore. But she did say if we exercise, eat healthy, and really stretch our brain we can get brain function back! I highly suggest you listen to this free podcast of an awesome workshop on Chemo Brain. www.youngsurvival.org And you won’t feel so alone or powerless!
Two things I want to say before I dive into this.
Everything is temporary. (every situation is temporary-thank goodness and time will pass) and
Everyone takes chemo differently- even the same exact chemos.
Before I was a cancer patient- I didn’t know the different between chemotherapy and radiation. It seems ridiculous now- but that’s common. Chemo is a systematic treatment- it treats the whole body because it goes in your blood stream. And radiation is a localized treatment- you get “radiated” (or as I like to say “nuked”)in a specific location. So my background going into my first day of chemotherapy was that I had a close friend who passed away from cancer and I saw all of her side affects first hand. And I also had all these women in my support group who said they went back to work or walked the beach after treatment. Even though these were exact opposites I had worked myself up with so much anxiety I think I made it worse. My first chemo was so much worse than all my others and I think it’s because I didn’t know what to expect and I was really nervous. I found out that your mind can really influence your body. I had some misconceptions and anxieties that made it far worse than it needed to be.
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!
Olga and Linda threw me “Last Day of Chemo” party that even included anti-cancer cupcakes! It meant the world to me that they were there.
April 16, 2012 – 10:01 pm
I recently was sent an email from a friend who read an article from Miss Conduct from the Boston Globe. This was the question…
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!
Welcome to Cancer Victory! After my battle with Breast Cancer in 2008, I was frustrated that practical and useful items to help with the side affects from treatment were not in the hospital gift shop. Why is it so difficult for the hospital gift shop to carry things other than jewelry, t-shirts, wigs, bras and scented lotions. There are lots of innovative items out there to help with surgical drains, hot flashes, and nausea. Hospitals are doing a disservice to their patients if they think a breast cancer bracelet is going to help. So that’s why I started Cancer Victory. So patients and their families have one place to go to find practical, useful items to help with cancer treatment. Cancer patients will feel a little more equipped to handle the battle ahead and family/ friends will feel like they are giving something that will truly help.
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.
The truth about wigs
“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!
Dammit Dolls- a great invention when you really have some anger to work out. There is a hole in the wall at my old condo- I just couldn’t bring myself to patch it. That was my “Dammit I have cancer!” hole. I made a whole bunch of these for Survivors by the Sea, and have passed the torch to other women who have continued to make these for newly diagnosed women. The wall could have been spared. 😉
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!
Spiders anymore! I know this sounds weird but ever since cancer I am not afraid of spiders anymore because cancer gave me a new perspective. How can a little spider hurt me when I have gone through what most people consider hell on earth. So the house is also a little dirtier, the errands don’t always get done- and I hold my family and close friends a little closer. And the spiders eat all the other bugs in the house. It’s a win, win.
Here is some more information that I received from the BC conference that I wanted to pass along. There is a 2 page list of “safe” makeup/personal hygiene product companies to use and I also scanned in some quick tip sheets they gave me as well. This was all given to me by the scientists from the Breast Cancer Fund. And there is a report on their website that they handed out http://www.breastcancerfund.org/ (click on “media” on the top right corner- you are looking for the report State of the Evidence) and there will be a new one published soon that you can download from their website. Basically what the Breast Cancer Fund does is comb through all of the legitimate research studies out there about the environment and cancer links and put it together in 1 report that is easy to read. It is not “we think” but “we know” research. And some if it was scary- like the BPA in cans.
Here are some other tips I wanted to mention that I learned;
1. Use Stainless steel or glass when ever possible.
2. 1,2, 4 and 5 are safer plastics
3. Do not heat any microwavable safe plastics – or saran wrap.
4. Aluminum bottles are also not great because they require a liner, anodized aluminum is ok.
5. No teflon coated pans- use cast iron- it can be just as non-stick if you “season” it.
6. Do not eat any food that comes out of a can.
7. Thermal receipts from credit cards/ cash registers have BPA all over them. If you can skip a receipt don’t take it. They look just like the ones that are BPA free (I just bought these for work) so to be on the safe side don’t handle these receipts- it’s absorbed by your skin.
8. Stop cleaning with all of these harsh chemicals. They recommended vinegar, Castile soap (I have to research this I don’t know what it is) & baking soda to clean your tub/tile -just don’t mix vinegar and baking soda you will get a volcano! They also said a steamer for tile cleaning is great -it disinfects and kills mold with no harsh chemicals.
9. And there is something that is really bad in sofa cushions. I need to do more research on this. I guess it’s the flame retardent that they put on new sofas. So if your getting a new mattress or sofa- I can help you do the research.
10. Baby shampoo has formaldehyde in it! It may be hidden in the “fragrance” area
11. Avoid synthetic fragrance- which is most things with any fragrance including perfume.
12. Emissions from gas cars I guess are linked to BC. Guess I am going to have to move since I live on a highway.
13. The dirty dozen- the foods with the most amount of pesticides. They still want us to eat these but they want us to know what are the bad ones and if you can buy organic instead. http://www.ewg.org/foodnews/summary/
14. Find out how your current makeups & products rank- http://www.ewg.org/skindeep/
I hope this helps everyone get a little more chemicals out of our daily lives. Karen
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