Sunday, March 30, 2014

#cancersurvivorproblems

I don't have a twitter account, nor do I follow anyone. My understanding of hashtags come from Jimmy Fallon and people on Facebook. However, I do like the idea of short phrases highlighting the goings on in your life. I feel like most of mine would be under #cancersurvivorproblems.

#didIlookbetterbald? This one stems from difficultly from the chemo perm and came up when talking with the newest breast cancer survivor at work. She is nervous about her hair curling. I assured her that it would straighten out. Her and I did discuss it being hard when your hair is not fully in and when it is weird textures, because you felt like you looked great bald. It messes with your confidence. It does get better and I think a little over a year after I finally have a full head of hair the texture may have stabilized.

#nevertoomuchpink I was at the gym this morning in my UA Power in Pink t-shirt, pink running shoes with a pink headband on. No longer can I have too much pink. Love it.

#MaryJisright #Nomoredramainmylife People often tell you not to sweat the small stuff, but it is hard when you don't have perspective. Well, life after cancer gives you perspective. I have learned how to let a lot of things go and avoid drama even more than before. Also, hoping for many more years of no medical drama.  It makes for a peaceful, happy existence and really who doesn't want that.


#TMI #overshare #boundrieswhatboundries I blame this blog. I have become the queen of the overshare. I'm sure people don't really want to know every detail about my medical history, but they are going to get it. Broccoli slaw causing abdominal distention? Why this seems like appropriate topics for phone conversations, office conversations and conversation over dinner.

#ETforScans Sometimes you have so many tests and appointments in one day you have to take a vacation day from work to get them all in. And sometimes you have to have so many different dyes, radioactive isotopes injected into your veins that you might feel a little blah after and prefer to just go home. Sometimes you'll drink mochacinno flavored barium for lunch and want to go home to drink copious amounts of water. Sometimes this date is April 14th (Radiation Oncology follow up, Bone Scan and CT Scan X2).

My legs are tired and running is hard anytime after noon. #tamoxifen. I cannot pull out the technical name for a procedure, but I can describe it using hand gestures and pointing to organs. #tamoxifen. Hot flashes. #tamoxifen #thisgirlisonfire. [Only the last one is an actual side effect. I would totally overuse #tamoxifen for any of life's challenges]

#cancerfreelifestyle #organics4life #allmystorgaecontainersareglass #BPAfree #iworkout
I workout 5 out of the 7 days. I am back running competitively (with a new definition of competitively). I have made peace with my grocery bill and the cost of purchasing organic apples, celery, potatoes and other members of the dirty dozen. I am obsessed with organic milk. And as of last week all of my storage containers are glass. Even my morning yogurt is now in 2 cup pyrex.

#grateful #happy

Wednesday, March 19, 2014

Addendum

Great news today! The MICU bear has helped another colleague successfully complete her breast cancer treatment (minus a couple of herceptin treatments). One of the respiratory therapist let me know that the newest breast cancer survivor was in the hospital and was only working until 11 am. It was 10:45 am and I had already missed her on Monday. Cut to me trying not to run through the halls of the hospital to find her. Well I found her and she looks and feels fantastic! She was overflowing with gratitude (such a great place to be) and showed me photos of the blanket her mother had made. She said 72 people gave her mom a pink fleece square and she embroidered everyone's name on the square and put the quilt together. How fantastic is that? We briefly chatted about weird puckering breasts after surgery and her chats with a plastic surgeon. Apparently fat injection is really frowned upon because it leads to lots of unnecessary biopsies because it looks like cancer on a mammogram. We briefly chatted about hair; she now has full scalp coverage! I let her get back to work. More survivors! Hurray!

Dubious Honor

You know how everyone laughs with the ridiculous list of side effects that are listed on medications? You know how when you sign up for a clinical trial on a vaccine they provide you with a list of all the risks? Well, the clinical research coordinator found me today to let me know that the study had provided her with an addendum to the list of the risks. The new side effect is:

Syncope

Although none of us know for sure, we are all pretty convinced that this is my contribution to the study. Yes, I am now the proud contributor of a side effect. I told the coordinator that we'll just have to wait and see what happens after the April injection. She told me that this is why they always tell people that sometimes in the hundreds of people only one person will have that side effect. Glad my contribution was not anaphylaxis.

Here's hoping after the April injection I'm not yelling timber.



Wednesday, March 12, 2014

Savoring the Flavor

My colleague left me the most amazing, beautiful article form the Boston Globe in my mailbox this morning. You can read about the triumphant Carolyn Grantham here. Life isn't fair a lot. Carolyn is a fabulously funny food blogger who is unfortunately losing her battle with squamous cell carcinoma. She blogs honestly about all things cancer and food related while continuing to be positive. She remains positive despite her fervent love of food and her inability to eat it. While delaying a feeding tube she found ways to enjoy and still taste foods while having it pureed and drinking meals through a straw.

I cannot even begin to think how she even wrote the words to her post titled End of the Line. I love that she still focuses on the positive. When discussing her bucket list she states "Because anyway, who cares what I haven't done? That list would be a mile long for anyone." and focuses on what she has done in life.


This article also reminds me of what people give up when professionally we recommend feeding tubes. Sometimes you loose that when you focus on whats best for the patient nutritionally/physically but there is that emotional, quality of life piece.


All sorts of crazy perspective.


Thank you Carolyn. I will savor my meals a little bit more.

Thursday, March 6, 2014

New Ingredient to be on the Lookout For

On NED day while getting ready to take myself out to breakfast I had the radio on. After it played Kelly Clarkson's Survivor (and I had the radio up as loud as it can go) the announcer comes on and states "Silent Spring Institute of Newton release report on potential carcinogen Cocamide diethanolamine, cocamide DEA". In my NED celebrating I filed it away to research more.

Welp. I opened that can of worms. Cocoamide DEA is just the start. But, let us start there.
Here is the story on WCVB Boston. According to the research, in animal models, cocoamide DEA causes liver and kidney tumors. Cocoamide DEA is used to increase the lather-ability of cosmetics. It's found in shampoos, soaps and lotions. Shampoo, soap and lotion. Think about how much exposure and potential absorption by your skin is going on here.

Cocoamide DEA is made by taking coconut oil with diethanolamine and that is the part that is carcinogenic.

WCVB states the ingredients could be listed as the following:
  • amides, coco, n,n-bis (2-hydroxyethyl)
  • amides, coco, n,nbis (hydroxyethyl) 
  • coco amides, n,n-bis (2-hydroxyethyl)
  • coco n,n-bis (2-hydroxyethyl) - amides
  • coconut diethanolamide
  • coconut fatty acid diethanolamide
  • coconut fatty acid diethanolamide
  • cocoyl diethanolamide
  • diethanolamine coconut fatty acid condensate
  • n,n-bis (2-hydroxyethyl) - amides, coco
  • n,n-bis (2-hydroxyethyl) - coco amides
  •  
    Thankfully Dove soap and Curel do not have these ingredients. However, on the weekend docket will be purging/investigating anything else in the house. 

    Looking forward to working my way through the Silent Spring Institute's massive research on breast cancer and the environment. The 45 negative genetic tests I have and this header "Breast cancer rates have risen in the United States; between 1973 and 1998, rates increased by more than 40 percent. Identified breast cancer risks cannot account for this escalation. That means that additional, unknown causes must be at work. If we can find out why incidence is increasing, we can learn to prevent future disease." have me hooked on the site. I have a feeling I will be throwing out a lot more items in my house. 

    Also, if I call it Silver Springs one more time I really don't know what I will do with this brain of mine. 

     
     


    Sunday, March 2, 2014

    All the NED-iest

    As my celebration of one year cancer free continued through the weekend it be summed up with Family, Friends, Flowers and FOOD. A lot of tasty food.

    I started my Thursday with breakfast. Whole Wheat (I am a dietitian after all) chocolate chip coconut pancakes with a side of griddled mashed. You knew mashed potatoes were going to make some sort of appearance during the celebration.



     These are my pancake before and after photos. The waiter who tried to talk me down on the number of pancakes was amazed. They were delicious.

    I also had a torrone and a pint. A pint of hormone free Ben and Jerry's frozen yogurt. Hey baking and dancing in the kitchen has you work up an appetite.

    Because I watch a lot of Top Chef and occasional Cupcake Wars, when planning my menu for the NED party I decided that even if subtle all items would have some sort of tie in to foods I ate during my cancer journey.

    Here was the menu:




     Spinach Dippers. Also, known as Spinach and artichoke dip heated up in small tortilla cups. I still eat a lot of spinach to this day, but I always remember my eating the vegetable bitterly on August 8, 2012. 

    Onion Dip.  I made homemade french onion dip with greek yogurt (found in Elllie Krieger's Comfort food fix). I wanted onion dip so that I had something to serve Pop Chips (popped potato chips) with. Pop Chips, usually one bag of regular and one bag of salt and vinegar, were a mainstay in my grocery cart during chemo.  I usually would eat both bags during the first 3 days after an infusion.

    Asian Peanut Sauce. I love peanut butter. However, after I finished the 4 rounds of chemo, peanut butter was a food that made my heartburn/fire inside much worse. However, when the burning improved it returned to one of my go to proteins while rebuilding my muscles in operation regain fitness (still ongoing).  Also, asian peanut sauce also pairs really well with veggies and what is a party without a veggie platter? And below is the only photo I took of all the food I made. The blanched broccoli to dip in the sauce.


    Pizza Dip. One of my favorite interactions with the research NP for my vaccine shots was the day I was trying to explain to her why I had such difficulty having my blood drawn, because I ate a large pizza for dinner. I love that she made sure it was in my medical record in order to demonstrate my appetite.

    Gingerbread Cupcakes with Cinnamon Cream Cheese Frosting. The two biggest factors in my fighting the awful taste in my mouth during chemo. I think ginger and cinnamon will forever be two flavors that make me happy. Side note on the cupcakes. One of the RNs that I work with told me in honor of NED I should make boob cupcakes. I said funny, but no. Unintentionally, however, the cupcakes looked like boobs. Cinnamon cream cheese frosting is tan colored and I have candy pink ribbons that I put in the center. They made an excellent conversation piece.

    Oatmeal Peanut Butter Chocolate Chip Cookies. When I had severe heartburn after the fourth chemo infusion I ate oatmeal three times a day for awhile (week or so) and although I eat oatmeal every morning before work oatmeal is still one of my go too foods. Chocolate, thank goodness, and its fantastic mouth feel and taste returned about a half way through XRT treatment.

    The centerpiece of my NED feed station was the flowers from my parents.
    Plenty of Pink!

    After a couple of days with lots of great cards, messages and outpouring of love from my friends and family I would say I do feel like a room without a roof. I hope this song wins the Oscar!

    If you need a reason to love this song anymore, see this piece on a nine year old boy named Damon who is using this song as his them song for his battle with bone cancer! Go Damon go!