There’s No Whining in Baseball but There IS Whining Through ACT #Chemo

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I was searching old photos to try to find one of me playing softball or some sort of sport and couldn’t find one. But I did find a bunch of me with some pretty crazy hairdos over the years.

In my last blog post I told you how I was never very good at softball…. that was my sister’s department. She was the star pitcher and hitter I was the stinky catcher who always struck out and almost always missed the ball she’d pitch directly into my glove. Each of us have our own unique gifts and talents and mine definitely was not sports!

But now, figuratively, I’m looking at this Metaplastic Carcinoma breast cancer battle as a game in the game of life. I can either try my best and try to hit back at the curveballs I’ve been thrown, or curl up in a ball, cry and give up.  I think we all know how I’ve chosen to play this game. As Tom Hanks once said, “There’s no crying in baseball.” But, unfortunately, there is crying, and some whining, while undergoing ACT chemo.

I was hesitating to update my blog because I didn’t feel I had anything uplifting or inspirational to say. The last few days have been pretty tough. So far I have had 2 of the 4 A/C part of the ACT chemo. A stands for Adriamycin and C stands for Cytoxan. My doctor said I may have some of the following side effects, but not all. Info from Chemocare.com.

Adriamycin Side Effects:

  • Decrease of white blood cells, red blood cells and platelets
  • Hair loss
  • Mouth sores
  • Nail changes
  • Discolored urine
  • Severe sunburn with sun exposure
  • Nausea, dizziness, fatigue

Cytoxan Side Effects:

  • Decrease of white blood cells, red blood cells and platelets
  • Mouth sores
  • Decreased appetite
  • Taste changes (metal taste in mouth)
  • Hair loss or thinning
  • Changes in menstrual cycle
  • Bladder irritation
  • Nasal congestion/bloody noses

I get my A/C treatments every other Thursday, followed by a shot of Neulasta on Fridays to boost my white blood cell counts.

Neulasta Side Effects:

  • Bone pain
  • Pain in your arms or legs
  • Bruising, swelling, pain, redness, or a hard lump where the injection was given

Unfortunately I have had almost all of the side effects listed for the A/C and Neulasta. I’ve had pain in my back and ribs, mouth sores, and pain in my scalp due to the hair loss. I’ve also been very nauseous and dizzy since last Thursday’s treatment and don’t feel safe to drive. Last night the muscle pain in my legs was really harsh which made me nervous for the next 2 A/C treatments to come.

The doctor prescribed three different anti-nausea meds which, unfortunately, mess with the digestive system. So do I want to be nauseous or have proper digestion? That’s my choice.

Do I sound like I’m whining? Maybe. Do I have the right? My breast cancer sisters say YES! ACT chemo is very harsh and its effects last for over two years in your body even after you’re all done. Anyone who has been through it knows exactly what I am going through and how tough it can be. One woman I spoke with said she used to carry a pot in her car in case she had to get sick. Another said she did nothing but sleep for 18 of 24 hours in a day. I am somewhere in the middle.

Some days it’s hard to stay positive when every part of your body hurts, you’ve gotten 3 bloody noses and your hair is still painstakingly falling out strand by strand. But I know there is a light at the end of the tunnel and I will get through it.

Over the course of the last few months I have met some of the fiercest, strongest warrior sisters who have inspired me to stay strong, keep a positive attitude and keep smiling. Two A/C’s down….. 2 A/C’s to go….followed by 4 Taxol……75 days and counting! Then there’s the 6 weeks of radiation after the 16 weeks of ACT, but who’s counting?!

To support my breast cancer battle on my GoFundMe fundraising page, please click here.

#MyLeftBoob #BreastCancer Chronicles – Chemo Day 20: Practice Real Love, Pay it Forward

relay meeting

Day 20 Chemo Update – April 28, 2015

It’s been nearly 3 weeks of chemo and symptoms are not getting easier,but are getting easier to predict after the fact. I know I will be tired, dizzy and nauseous on Friday, Saturday and Sunday with some lingering symptoms on Mondays and Tuesdays. So as long as I know this ahead of time, I can plan around it and still work and have a life.

Last night was pretty rough. Day #3 of large clumps of hair falling out in the shower was not fun to deal with at all at 3 a.m. when I couldn’t sleep. I’d finally had enough so I grabbed my trusty scissors and cut it off.

My sister gave me an awesome sassy haircut last Thursday that I was able to enjoy for 3 days but I think the buzz cut would have been much easier to deal with. Live and learn. And hopefully I’ll never have to go through this ever again like some of my other super strong Warrior Metaplastic breast cancer sisters.

Speaking of warriors….. we had our first Bethel, CT Relay for Life team meeting last night which was awesome. Fourteen teammates showed up for my team “Wendy’s Warriors,” two donned with silly hats to show their support of my first day out in public rockin’ the chemo scarf.

One of my friends wore a huge turban and the other wore a bandana made entirely of bubble wrap! It was so nice of them to support me and make me smile. I still have a ‪‎buzz cut‬ under but the ‪scarf but I think after a few more days the “‎bald is beautiful”‬ look will be hiding underneath.

We have decided to plan two separate fundraisers: One will be in May and is for the American Cancer Society’s (ACS) Bethel Relay for Life on June 12, 2015 and we are doing this through “Wendy’s Warriors” t-shirt and bracelet sales. We will also have a small music night with giveaways and raffles to benefit ACS.

The second fundraiser will be a benefit concert in late June or early July in support of the #MyLeftBoob documentary which is being produced and filmed by Danbury-based “R Media Productions.” The purpose of the film is to raise awareness of this very rare cancer that only 1% of women are diagnosed with by chronicling my journey with Metaplastic Carcinoma since the beginning.

All proceeds from the documentary will go directly to Metaplastic Carcinoma research, testing and clinical trials. More info on both fundraisers, and the trailer, is coming soon!

The main point of all of the work I am doing throughout my battle is to raise awareness for early detection to help others. I am so fortunate, blessed and grateful to have found the lump while it was still only Stage 1 and had not spread to my lymph nodes. And I am firmly believing in faith that it won’t come back because of the 16 weeks of ACT chemo I’m going through and because we got it early.

I believe I’m here for a reason and I am not a statistic. I can use my platform of being an editor to help others remember to do self exams so they have a fighting chance. I can use my life, my survivor story, my voice to help others.

I’ve heard some people say they are worried about me because I am doing “too much” in the beginning of my battle with work, kitchen makeover, Wendy’s Warriors Relay team, awareness campaign, etc. And to them I say….. thank you for your concern but you don’t know me very well. 😉

I have always been one to juggle multiple tasks and now more than ever I need these distractions so the madness, fear and depression doesn’t take over my mind. I need to know that my fight is for a reason– not just to help myself get better, but to help others when I am well. These are welcome distractions.

Since I work from home, I am able to rest when I need to and relax and let the helpers help…. the wonderful friends, family and volunteers from The SCOTTY Fund who have been helping with dinners, a cleaning crew from The Maids of Brookfield who will be coming once a month beginning in May and the list of awesome people supporting me and lifting me up goes on and on. I could not do all that I do without all of you! So thank you!

 

Staying positive, uplifted, strong and sassy is how I will win the battle…. having faith, praying, laughing, loving, living, paying it forward. If you look very closely at the bottom left corner photo you can see my new “Love Wins” necklace that Figs Wood Fired Grill owner Kristin Tartaglia gave me. The necklaces were made to honor the life of Ana Grace Marquez, a Sandy Hook student lost in the tragedy of 12/14. Ana Grace’s memory lives in in our hearts when we share her message. #LoveWins

Whether or not you believe in God, the universe or karma, when you share goodness, kindness and love you will always win.

“This is how we’ve come to understand and experience love: Christ sacrificed his life for us. This is why we ought to live sacrificially….and not just be out for ourselves. If you see some brother or sister in need and have the means to do something about it but turn a cold shoulder and do nothing, what happens to God’s love? It disappears. And you made it disappear….let’s not just talk about love; let’s practice real love. This is the only way we’ll know we’re living truly.”

~ 1 John 3:16-18 The Message Bible

To support my breast cancer battle on my GoFundMe page to help cover the cost of mounting medical bills from 2 hospitals and 3 surgeries, please click here.

#MyLeftBoob #BreastCancer Battle: Mind Over #Cancer

w short hair

I’m gearing up for chemo #2 on Thursday after a week of ups and downs, physically and emotionally. The homeopathic nurse at the hospital told me there are 3 important things to focus on to get better: Mind, body and spirit.

Mind: Think good thoughts, stay positive, keep a good sense of humor

Body: Eat healthy, drink lots of water, avoid carbs, sugar and processed foods

Spirit: Do relaxing activities like yoga, meditation and anything to keep stress levels down

Last Thursday was my one week post-chemo follow-up. My oncologist said my white blood cell counts are low, which is normal, but everything else looked good. The side effects below are what a chemo patient can experience from the drugs I’m taking- Adriamycin & Cytoxan (A/C). For me the worst has been the metal taste, mouth sores and difficulty concentrating.

Adriamycin & Cytoxan side effects:

-Decrease of white & red blood cells
-Decrease in platelets
-Hair loss
-Mouth sores
-Nail changes
-Discolored urine
-Nausea
-Fatigue/exhaustion
-Severe sunburn with sun exposure
-Decreased appetite
-Taste changes (metal taste)
-Changes in menstrual cycle
-Bladder irritation
-Nasal congestion
-Difficulty concentrating
-Problems with short-term memory
-Confusing dates and appointments
-Misplacing objects
-Fumbling for the right word or phrase

Then there’s nausea and digestive issues from the anti-nausea meds. I could be feeling good one minute and then BAM! I get hit with a wave of nausea and/or exhaustion.

Another big problem I’ve been experiencing is what they call “chemo brain.” According to MD Anderson Cancer Center, chemo brain is “difficulty in efficiently processing information, is a legitimate, diagnosable condition that may be caused by chemotherapy treatment, the cancer itself, or secondary medical conditions such as anemia.”

So please be patient with me if I ask you the same question twice, mixup a date, or forget if you already told me something. It’s just another terrible side effect I must deal with over the next few months or even two years.

When I went for my first treatment on 4/9, the nurse said they don’t call A/C “red devil” anymore but it still is pretty scary. The medication is red in color and is so toxic that they warn you to flush twice with the lid down and wash your hands for 45 seconds during and after infusion.

It can only be administered by hand into a vein by a specially trained Chemotherapy Nurse in a cap, gown and gloves by hand through an injection. My dosage was four huge tubes that look like 4 monster sized syringes. It’s shot directly into the port in my chest because it’s really tough on the veins in the arm.

After 3 more A/C treatments over the next 14 weeks, I will then get 4 doses of Taxol followed by 6 weeks of radiation (30 treatments).

My doctor said my hair will start falling out on day #19 or 20 after the first treatment which will be on 4/28 or 4/29. I’m getting a buzz cut this Thursday because my breast cancer sisters say it’s less traumatic when it falls out in 1/2 inch clumps instead of 4-5 inch clumps. Thankfully I have a very generous and talented sister who owns a hair salon (Salon Kamala in Bethel, CT) and I know she will make me look cool.

I am so grateful to be surrounded by such amazing friends, family and even complete strangers who have been delivering meals, contributing to my fundraising page so we can pay our hospital bills on time, leaving trinkets, books and cards in my mailbox, and constantly praying for me and lifting me up.

One thing I have not yet spoken much about is how much I have felt God’s presence throughout this fight through the kindness and blessings of so many. Here is a scripture that’s helped me get through some very scary experiences, 2 surgeries, 2 biopsies, a tooth extraction, 2 emergency room visits and my first chemo:

“God is love. When we take up permanent residence in a life of love, we live in God and God lives in us. This way, love has the run of the house, becomes at home and mature in us, so that we’re free of worry…. There is no room in love for fear.” ~1 John 4:17-18, The Message Bible

Thank you all for making my fight easier by blessing me with so much kindness.

Looking forward to:

***84 days until last chemo!

***85 days until family vacation!

Peace,
~Wendy 🙂