Lymphedema Awareness and Breast Cancer

March is Lymphedema Awareness Month.  I deliberately posted this toward the end of the month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force.  Some women have gotten this condition with no nodes removed, but that is more rare.

At the very LEAST, your preventative measures should include 1)  Wearing a fitted compression sleeve when you fly in an airplane – even for short flights;  There is other information out in googleland to the contrary.  Do not listen to it.  I have met two women who have full-blown Lymphedema after a quick air flight.  One had been 20 years out of cancer treatment!   2)  When you are lifting heavy items or moving heavy items, make sure to wear a compression sleeve.   3)  Lots of repetitive motion like shoveling snow, sweeping, mopping could be cause to wear a compression sleeve.  Pretending Lymphedema cannot happen to you does not work!

I got full-blown Lymphedema after lifting three heavy plastic grocery bags with my “bad” arm.  And I had been to all the classes and visited a Lymphedema Therapist.  That is all it took to bring it on and cause me to wear a compression sleeve and gauntlet every day for the rest of my life.  Here is a previous blog post I wrote about Learning to Live with Lymphedema that gives more information: https://denise4health.wordpress.com/2013/02/11/learning-to-live-with-lymphedema/

The following 10 minute, professional video entitled, “Breast Cancer’s Dirty Little Secret”  does a wonderful job giving more information about Lymphedema.  It is definitely worth investing the 10 minutes to watch!

 

PLEASE CHECK OUT MY ONLINE STORE FOR CANCER PATIENTS:   CH-collage

Breast Cancer – How to Feel Sorry for Yourself and Complain

As a breast cancer patient and survivor, do you feel guilty on the days you feel sorry for yourself or when you have a pity party?  I know I do.   Usually, I bring solace to myself by saying, “Oh, at least you are alive” or “So many people have it so much worse than you do, then I let those individuals flash through my mind.”  Plus, I say, “Denise, you are supposed to be a role model and an inspiration, get over it.”

Recently, my mom, sister and I went away for the weekend to a place we used to frequent before my breast cancer diagnosis 2 years ago.  This was my first time back.  When we got to the hotel, it hit me what a different person I was now than the last time I had been there.  I felt very sad, but gave myself my usual “don’t feel sorry for yourself” pep talk.

After a busy day, back in the hotel room, my sister looked at me with much compassion and said, “You have so much to handle and go through.”  I started to cry.  It was the first time someone actually witnessed me for a 24 hour period since diagnosis.  My sister had been observing me quietly.   She witnessed the hassle of my breast prosthesis, the 16 pills and supplements I have to ingest, the Lymphedema compression garment struggles and the countless and constant limitations Lymphedema causes, the food allergies that I now have including gluten and dairy that developed during chemo, my heart issues, and the excruciating joint pain I have on most days from Arimidex.  (Thanks for listening!)  Her compassion and observations rather than a quick “You look good” made me realize it isn’t my imagination that I do indeed have much to deal with that prior to breast cancer I did not.

After I got home, I pondered it all.   An idea popped into my mind.  On Fat Tuesday, the day before Lent begins, people eat, drink and be merry because they are facing fasting and abstinence.  So I decided I was going to have a customized Fat Tuesday of my own and allow myself to complain as much as I wanted within a 2 hour period – no more no less.  Then I would be back on abstinence from complaining.

So I complained up a storm, felt sorry for myself, got angry, and had a solo pity party.  Honestly, it felt good to release some of the pent-up frustration and breast cancer toxins.  After the 2 hours, I went back to thinking, “I am well”  and expressing that sentiment to others when asked.

Something happened that I wasn’t expecting.  I felt energized in a new way.   Giving myself compassion and allowing myself to complain about the realities helped move me forward and  accept yet again that things aren’t the way they used to be.   New ideas, dreams and goals have come to me over the past week after I experienced this catharsis.

I would encourage you to give yourself a window of opportunity to allow yourself to feel the pain, anger and frustration of breast cancer.  It will help propel you to a new place!  And if you are not a breast cancer patient but dealing with absolutely anything, try this.  It will help!

If you have not checked my store, Hello Courage, please click the picture and take a look!  I so much appreciate all the love, support, and orders I have received.HC-CollageSign

 

Triple Negative Breast Cancer, A Young Mom’s Story

Monday, March 3, 2014 marks Triple Negative Breast Cancer Awareness Day.  In honor of that day and to educate about Triple Negative Breast Cancer, Alma Sanchez is my Guest Blogger.

Alma Sanchez, Stage 2 Triple Negative Breast Cancer Survivor with her beautiful daughter

Alma Sanchez, Stage 2
Triple Negative Breast Cancer Survivor with her beautiful daughter

Alma, diagnosed at age 34 with Triple Negative Breast Cancer, wife and mother, first wrote to me in May, 2013 when she was beginning Chemotherapy.  Alma and I formed a bond only breast cancer sisters can have after many emails sharing our breast cancer stories.   She is a delightful, positive person who tells her journey in a compelling and inspiring  fashion.  Alma resides in Tampico, Mexico, had treatment in Houston, Texas and then in Tampico, Mexico.  Here is her story!  Alma brings all of us much wisdom and hope no matter what your diagnosis.  Alma’s story will inspire you, bring more understanding to your journey, and help inform us about Triple Negative Breast Cancer.

Alma’s Story

It was  April 8, 2013 when I had a surgery to remove what the doctor thought was a benign cyst. Five days later the pathology reports said it was cancer. When I heard the news from my husband, I denied that could be possible. I assured him that the pathology report was surely wrong. I have had a healthy lifestyle all my life…that could not happen to me.  I was only 34 years old!. I was a yoga teacher, I never smoked, I don’t drink,  and I breast fed my little girl at least six months! I was in denial. We went to the doctor and he confirmed the news. It did not start to sink in until midnight. I did not sleep that night. I felt betrayed by own body! I was in shock. I had a cousin who had died exactly a year before from breast cancer, but I thought that could not happen to me.

There is so little information on breast cancer in young women here in Mexico where I live. My mother had ovarian cancer five years ago, it was detected early and she did not need chemo. I didn’t know that my genetic background could raise my probability of getting cancer at such an early age.

Five more days after getting the news, my husband and I flew to Houston, Texas where I had an appointment at Houston Methodist Hospital to see a breast cancer oncologist first and try to get a mastectomy as soon as possible. When I was in Houston I received the news that the type of cancer I had was called: Triple Negative Breast Cancer. I didn’t know anything about it. The oncologist explained everything in detail to me, of what it meant.  Triple Negative Cancer does not depend on estrogen, progesterone or the HER2 (human epidermal growth factor) to fuel it and grow.  Also, only 15 of every 100 breast cancer diagnoses are triple negative. The disease also is often hard to diagnose because it is more common in younger women and is not always detected in mammograms. I was in a new shock. Then as you can imagine, I searched the internet with the words Triple Negative Breast Cancer…..and everything I read said something with the words “lethal” “deadly” “aggressive” “recurrence” “metastasis”…..my heart pounded and tears flowed and flowed out of me just thinking I could die so young and leaving my baby and my family behind.

When I left for Houston, my mother was taking care of my 21 month old baby who I had to leave behind.  I always rocked her to sleep every night. When I came back, I couldn’t even pick her up because of the surgery. The night before I flew to Houston would be the last time I rocked her to sleep in my arms. I cried so much. After the mastectomy my diagnosis was Stage 2A, High Grade, Triple Negative Breast Cancer with no lymph node involvement.

On the good side…I met a great breast cancer oncologist, surgeon and plastic surgeon in Houston. I was told I needed a mastectomy and dose dense chemotherapy. They recommended  a double mastectomy but my insurance would not cover it, so I proceeded with a mastectomy on the affected side. Although I felt like a truck ran over me after surgery,  I looked really well. I was offered a nipple sparing mastectomy, and I decided for it. We stayed in Houston almost a month.  I cried daily for my baby girl whom I missed so much.

I decided to come back home to Mexico and get dose dense chemo (Adriamycin/Cytoxan and Taxol) exactly as my oncologist in Houston prescribed. Looking back at the chemo times I can now say it was brutal. I remember my body shivering from toxicity. I thought I was going to die from chemo and not from cancer. After the second treatment I wanted to quit. Denise helped me get through it. She understood what I was going through and her support was really helpful. As the treatments progressed I became another  person…..I got bald, browless, I gained weight, I felt a kind of fatigue I had never felt before and excruciating bone pain from the Neulasta shots…..I looked at myself in the mirror and could not recognize myself. I was lucky to be showered with love from my my husband, my mother, my family and friends and that helped but feeling really understood from someone who had walked my journey before was very healing for me. Thank you Denise.

After my second chemo treatment I told God that I could not do this. That I was not strong enough, that I just could not do it.. I told him I did not understand him…..how could he do this to me….with my baby so small. Yes…..I asked why me! I was mad at God. Those were dark, very dark days for me.

During those days I had a dream. In my dream I saw God, and I was sitting down as one would do in a classroom. He showed me what looked like my light body or my aura or something similar….and it had holes in it! My daughter was there standing and looking lovely. He pointed towards her and said “Love can heal you” and then he pointed towards my light body. At the same time he said that, my little girl´s body seemed to “emit” a golden kind of energy or dust towards my light body and it filled up the gaps. And that was it. I woke up astounded by the dream and thought “Of course, the love of my daughter can heal me”, it sounded logical. As time has passed and I have meditated on that dream I have come to the conclusion that the kind of love I can feel for my daughter….pure, unconditional love…..That feeling can be  healing but I need to feel that for myself. That is the love that can heal me. Loving and accepting myself in a pure and unconditional way. I do not dream with God normally….and maybe it was my higher conscience, or the Universe, or just a dream….but anyway the message is so so good that I feel the need to share it. It has had a profound meaning in my breast cancer journey. After having this dream I always end up asking what would Love do in my situation.

I finished my chemo in September 2013. I needed another surgery in October to obtain clean margins.  I will get another surgery in April, 2014 to exchange the tissue expander for a cosmetic implant. I am right now expecting the results from my BRCA test and with those in hand I will decide if I get a preventive mastectomy on the other side.

Alma, her husband, daughter, and mom taken December, 2013

Alma, her husband, daughter, and mom –  December, 2013

I never felt that the word “fight” breast cancer resonated with me. How could I fight my own body? My own cells? I think this is a journey….but it is not a fight for me. I am doing everything I can to work with my body, my mind and soul to be the healthiest I can be. Like teamwork. I hope no one gets offended by this….I think it is different for every women and I respect that. I choose this to be a healing and loving journey. Not a battle against my own body. If I resist living what I have to live and wasting energy on that I wont have enough energy to heal….so I am tying to embrace my journey in the most healing way I can.

To sum this up….I want to tell women who are right now battling Triple Negative Breast Cancer something positive among all the negative stuff we normally read about it, and there are some things we can do even if we still don’t have targeted therapy:

1. Love heals. Surround yourself with people who love you or can give you lots of love, support and empathy during your journey.

2. If you can afford it get some psychotherapy. It is shocking to face your mortality when you are young and probably raising a family or achieving life or work goals. You need to speak or write about it but please let it out of your system.

3. If you are getting chemo right now please remember that this too shall pass. And on the good days, please do things that make you happy….get out of the house….go for a walk (nature does wonders to heal a body and soul)….get together with your friends…..try to be the happiest you can. It is food for the soul.

3. Eat healthy and nourishing food. It was difficult for me during chemo. I could do it on the good days but not on the bad days. I am trying my best right now to get my green vegetable juice daily and cook healthy meals.  Do not count calories, count nutrients!

4. Meditation. Please do it. I know its hard work. Looking inside ourself is something that has proven to be very healing. I meditate on my own and also go every week to a guided-meditation group. Cells respond to our thoughts and feelings.

5. Exercise. It is known that triple negative breast cancer responds well to a low-fat diet and healthy BMI. Whatever you like to do go for it….I´m doing yoga, walking and some pilates…..it is tough because my energy is still not normal but I feel so much better after it.

Alma is a Yoga Instructor!

Alma is a Yoga Instructor

6. Live fearlessly. Fear is one of the lowest vibrations we can have. I wont lie to you….there are days when fear of recurrence is really strong but I try to focus on the positive and remember myself that living with fear is not living at all.

7. Learn to say no. No to toxic people, or situations and no to whatever doesn´t make you comfortable or happy with yourself. If you need to please someone…this is the time to please yourself. But….learn to say YES to things that make your heart soar or try to do those things you thought you would do later o that maybe you put aside to focus on your family or your career. Yes to everything that makes your heart sing.

8. Last but not least, I am determined not only to be alive but to THRIVE after this!……WE CAN OVERCOME TRIPLE NEGATIVE BREAST CANCER!

But….if your cancer has recurred or you are on stage 4….do not despair….God is with us. I feel we cancer patients are really brave and courageous souls who choose to evolve in this way and then understand that suffering is not necessary to grow.  So even if you are stage 4…make the most of your time to make this a healing journey for your soul even when it is not for the body.

I am filled with gratitude to Denise for giving me the opportunity to express myself in her blog. Denise, I honor your journey and the journey of all women and men who have been through cancer.

Please check out Denise’s online cancer shop:     HC-ad