The Brain is safe....

Everyday has been something different lately. I had to have yet, another test. I was having headaches and some nausea. Scary symptoms for anyone with metastatic cancer. I knew that it was unlikely that I would have Brain involvement, after all, this is Estrogen positive breast cancer, it would be much more likely with a triple negative, right? It was also unlikely to have breast cancer on the side of a reconstructed breast . So, brain MRI it was. . I was so scarred to get the results; after all, every test has led to more bad news lately..,,,I was due for good news, Right? Well, thankfully it was good news and the brain MRI was NEGATIVE for metastatic disease. Thank the Lord...I had the MRI on Friday at 11:45 and my oncologist called me at 4 pm to tell me that the MRI was Negative. Those were 4 very long hours. I was so thankful for that telephone call and I know that my oncologist was very happy to call me with that good news. As a cancer nurse, I know that it's always great to call a patient with good news. 

My new normal means that my day now starts with making sure to eat breakfast and taking my cancer medication within 30 minutes of breakfast,. So, far the only side effect has been some nausea. This has been relieved with some zantac.. No hot flashes yet...but I'm always cold, so if I get the hot flashes it will be fine. My new normal is just fine with me, because I am still the same person and will continue to be the same person. 

It is life as usual. I am thankful for so much positive in my life and know that I will continue to enjoy this beautiful life of mine. This weekend Zachary and Leah, (my two older grandchildren)  had a sleep over. Having my sweet little granddaughter come in to wake me up with her little voice saying "You wanna build a snow man" on a snowy morning is what it is all about. Then going out to breakfast with my loving husband and grandchildren, cleaning my house while my husband plows the driveway, watching a good show, doing laundry, cooking dinner,  and eating ice cream...Yep, life is good and I know that this treatment will do what it is supposed to do. I will enjoy today and pray for a good response and to live many more years of enjoying my life. I feel positive for many more sleep overs with my sweet grandchildren. This is what it's all about!!

Yes, I know I have metastatic breast cancer and that I will need to have some kind of treatment for the rest of my life. I know that there is no cure, but, I will continue to push ahead and am positive that I will have an excellent response to the treatment and will live with this like people live with any other chronic disease. Cancer will not define me..I will define it...This is just a chapter in my life. 

With much love

Idalina (Linda) 

January 14, 2019

The Rabbit Hole.....

When I was diagnosed with recurrence of breast cancer, my mind was spinning and of course, started to go to examples of those patients that I have had as a breast cancer nurse who have not done well. Rochelle, one of the lovely doctors that I work with said to me "stop going down that rabbit hole". Well, her words have really helped me, but last weekend, I was deep in that rabbit hole and was paralyzed by the reality that I have breast cancer and could have the same outcome as some of these lovely ladies that I have cared for.
I am strong and am so thankful for my knowledge base as it has certainly helped me know what questions to ask and where to look for answers, but at the same time, it can be a double edge sword.
Last weekend was the first time that I had time to think and really allow the reality of what has happened sink in. I received word of my diagnosis of breast cancer on December 19th, There was no time for thinking or crying. I had to get ready for the holidays and make sure that life was normal. I had to get through all the testing and get all the answers. There was no time for crying or thinking. Well, let me tell you, It is important to allow those feelings to be felt, but we must then move on and not allow it to paralyze us.

When I was in that rabbit hole, my amazing husband let me stay there for a little while, but then helped me get out of it as did my loving friend Rochelle Strenger who is one of the doctors I work with. I message her and told her I was having a tough day and was in the rabbit hole. As my partner in treating our patient's, she did not need to say more than, "I know where your head is and get out of that rabbit hole, you are going to be OK".

Today, I am reassured. Yes, it sucks that I have metastatic breast cancer, and yes hearing those words associated with me is hard. I saw a specialist at Dana Farber today for a second opinion. Those words, "You are an oncology a nurse , you know that there is no cure for metastatic breast cancer, but there is treatment," were words of both despair and reassurance. I know that they can not offer me a cure, but she agreed with the plan from my local oncologist for treatment and gave me great hope for the future.
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For now, we move ahead. We have confirmed that I am  pre-menopausal, so here come the hot flashes that everyone talks about. I will be starting Lupron injections every three months to push me into menopause. My poor husband may finally have to deal with a crazy menopausal woman.

For the cancer: some of you may have seen the pretty commercials of the grandmother who is lively playing with her grandchildren talking about IBRANCE + LETRAZOLE for metastatic breast cancer.!! Well, I will be that grandmother. I will also need to start  monthly infusions of Zometa to strengthen my bones.

This is a great option. It has been FDA approved for about 4 years. I follow my patients on this regimen and have ladies who are doing great on this at 2 years and the doctor at Dana Farber reassured me that she has women who are doing great on this at 4 years. OK, so that's good news and if it stops working? Well she gave me so many other great options that can be used at the time of progression including some clinical trials that are close to being approved and will surely prove to be great treatments if and when I need them. So, this is no different than any chronic disease!!!

This is a well tolerated treatment and I wont even loose my hair.....and for now I will not allow myself to go down the rabbit hole. I will be here to spend more years with my Love, watch my grandchildren grow and hopefully some day even see my son get married and have children of his own...The future is bright and I will push forward..... If I start to go down the rabbit hole, I know that I have a great group of family and friends who will drag me out of the hole and lift me back up.

So, my family and friends, remember, tomorrow is not promised to any of us so enjoy Life and eat that cake.
Idalina (Linda)

The Shock of Diagnosis

Anyone who knows me understands that I am  the caregiver and not a very good patient. As a Breast and GYN Nurse Navigator I support my patients and their families through the cancer journey. Little did I know that almost overnight, I would be on the other end.
Let's start from the beginning.
in 2006, less than one year after starting a great career in oncology nursing, I was diagnosed with Ductal Carcinoma in Situ of the left breast. For those who are not familiar with this, It is basically, early, pre cancer of the breast that if not treated will become invasive cancer. This led to treatment that included a mastectomy with a big surgery called a tram flap to reconstruct my breast. I did not need chemo or radiation and was told that my chance of developing another breast cancer was about 2.5% higher than those who never had a breast cancer. I was 40 years old. I always worried that I could fall into that 2.5% and that I could  someday develop breast cancer on the other breast but never worried about the reconstructed breast. after all, "there is no breast tissue".
Who would ever think that I would get a breast cancer on the reconstructed side. That was not supposed to happen. Well, lucky me, I have fallen into that 2.5% chance with a cancer that resulted from the  less than 5% of breast tissue that is always left behind after a mastectomy.  Why couldn't I just fall into that small percentage of people who win the lottery?

Around Thanksgiving 2018, I noticed some fullness in my axilla (arm pit). I then felt a lump. I still never thought it was anything to worry about. My thoughts were, "its just scar tissue", "I just did to many push ups". After all, I know a lot about breast cancer and if I was going to get breast cancer it would be on the other side, right?  I finally got a bit worried and had one of the breast oncologist check for me. Even, she said, "I'm not worried", but you should have an ultrasound. Well, who would have known that 5 days before Christmas, I would find out that the swelling and small lump on a reconstructed breast would be "Breast Cancer". No way, I'm the breast cancer nurse, not the breast cancer patient. This was not supposed to happen to me! That was the longest ride home from work. What a great telephone call to take in the car after a stressful work day as a cancer nurse.  Somehow, I gathered my feelings , swallowed hard, took some deep breaths and came home to sit the love of my life down to tell him this news. Those are probably the hardest words I  will  ever have to say to him. I was so nervous to tell him. After all, it took him 52 years to find someone to grow old with. How I could take that away from him?

The next couple weeks were filled with holiday prep, not sleeping thinking of how I would tell my children, my family, my friends, and lots and lots of tests and procedures. After many tests including MRI's , CT Scans, Bone Scan's,( I'm sure that I am glowing from all the dye and radiation from all these tests); and a bone biopsy. I now have confirmed breast cancer that has metastasized (spread to my lymph nodes and bones).  So how am I feeling. Well the words are Hopeful, strong, determined, stubborn. tough. This does not mean that it's over. Many women live many years with metastatic breast cancer and I will be one of those women. Yes, I have had my pity parties, I have cried, I have worried. BUT...I will not allow myself to go there. It is life as usual. I love my family, my friends, my patients, my life. I will not allow this to bring me down. It is business as usual and enjoying life everyday to its fullest.

I am going to Boston on Monday for a second opinion to make sure that I am making the right decisions for treatment, and than we move forward.

Life is beautiful and I still have a lot of life to live! I will face this head on and do what I need to do to live my new normal with metastatic breast cancer.
Idalina (Linda)