I am… January 28, 2017

First off, I want start by saying how blessed I am! I am alive! I am working through this process! I am a survivor! I am a daughter, sister, mom, grandma, and friend! I am strong! I am a warrior! I am an educator! I am doing okay!

But I am also many other things…I am sad. I am grieving. I am worried. I am concerned. I am angry. I am in my head too much. I am human.

Here’s some truth for you…I miss my boob! I miss feeling whole! I miss the feeling of being sexy or desired. Yes, I guess I have bought into the societal BS that surrounds body image and it sucks! I want to be stronger for myself and others going through this process…but truth be told, I am struggling. I have a hard time looking at myself in the mirror…I know that it’s still fresh and raw and that it will take some time…it will come!

…I know that I am strong and that I will work through this. I know that losing my boob has saved my life. I just need to allow myself the time to heal, to be angry, to be sad, to be strong, to grieve at my own pace and time, to adjust to the newer version of me!! I need to stand tall in front of that mirror and truly assess myself…What do I want from life? What are my values? What are my strengths? What will this lesson teach me? What will I allow myself to learn? I’ve been given another chance at life…What will I do with it?

I am not looking for sympathy, just understanding. I do not want pity, just compassion. I do not have all of the answers, but will work hard to find those answers if it will help myself and others…those with cancer, survivors, and/or their family and friends.

I want to enlighten and educate others as I, too, am learning. I want to help others with a new diagnosis and survivors know they are not alone during this journey. I want to be raw and truthful because cancer and dealing with it is raw and scary.

I value all of the people in my life! My family and friends have offered so much support, understanding, prayers, love, continued encouragement, education through stories of their own journey with this disease, and I have to mention love again. The outpouring from each of you has been empowering and I am/will be forever grateful. There truly are no words to describe how all of you have made me feel.

If you have any questions, please feel free to ask! I would also love to hear your story.

Beside myself… January 26, 2017

On Tuesday, I learned that my cancer was a bit more involved than they first thought. The tumor was actually 1.7 cm and not the 1.2 cm/.9cm which I was told by two different doctors, respectfully. It was an invasive lobular carcinoma, SBR grade 2, and ductal carcinoma in situ with estrogen positive receptors. I know that I made the right decision to have the mastectomy versus the lumpectomy.

It seems that there is so much waiting associated with this disease! I learned that somehow my Oncotype DX test was not submitted the day of my surgery. This test takes about two weeks to do its thing…here’s some information about the test and why it is important:

“The genomic test will analyze a sample of the cancer tumor to see how active certain genes are. The activity level of these genes affects the behavior of the cancer, including how likely it is to grow and spread. Genomic tests are used to help make decisions about whether more treatments after surgery would be beneficial.

The Oncotype DX genomic test analyzes the activity of 21 genes that can influence how likely a cancer is to grow and respond to treatment.

Looking at these 21 genes can provide specific information on:

• the likelihood that the breast cancer will return
• whether you’re likely to benefit from chemotherapy if you’re being treated for early-stage invasive breast cancer
• whether you’re likely to benefit from radiation therapy if you’re being treated for ductal carcinoma in situ (DCIS).

So, the Oncotype DX test is both a prognostic test, since it provides more information about how likely (or unlikely) the breast cancer is to come back, and a predictive test, since it predicts the likelihood of benefit from chemotherapy or radiation therapy treatment. Studies have shown that Oncotype DX is useful for both purposes.” (http://www.breastcancer.org/symptoms/testing/types/oncotype_dx)

I have been so excited that I did not have to partake in chemo and radiation!! And now, I do not know if that is true. The percentages that come back from this test may change this scenario… I do not want chemo and/or radiation but if they come back high then I may have to opt for them because I do not want to have to go through this allover again!!

Did you know that approximately 70% of breast cancers are estrogen receptor positive? This means that these women’s cancers feed on the hormone estrogen and the estrogen blockers decrease the hormone in the bloodstream. Because my cancer was positive for estrogen receptors, I have to start taking an estrogen blocker every day for the next five years. I was informed on Tuesday that I will have to wait to start my estrogen blocker because they do not want the drug in my system if I have to start chemo and/or radiation.

In a interesting twist, I still have my ovaries (which produce estrogen, even post menopause) so I was told that I may need to have them removed. It seems that there is a correlation between breast cancer and ovarian cancer and they seem to go hand-in-hand.  I will be visiting with the GYN at Roswell to discuss this at length.

Cancer is like an onion with so many layers and so much to learn that it is certainly overwhelming!!

 

Meltdown January 15, 2017

I’ve been working really hard at my recovery since my mastectomy on Tuesday. It is interesting that the pain from the surgery has not been too bad. However, the emotional roller coaster is real!!

Cancer and its aftereffects are horrible. I am fortunate that my breast cancer was found early but when it came time to look at myself in the mirror for the first time, well it was devastating! I cried when I saw my disfigured breast area. It was nothing like I thought it would look like…here I am looking at my normal breast and looking at something out of a horror movie.

Today, I was trying on clothes so that I could go to church. It was a struggle! It seemed like everything that I thought would look good actually seemed to accentuate my missing boob and the grenade drain . Maybe it would not have been so bad but I have a fairly large boob so I felt that my normal boob stuck out like a sore thumb. I had a meltdown…I sobbed like a baby. Tears and snot flowing down my face as I tried to come to terms with the revelation that this is my new normal for quite awhile and that I actually do care about my body image more than I ever realized. I looked so lopsided…like a woman on one side and a eight year old girl on the other!

I posted earlier about the “Three B’s” and I have always prided myself on not buying into the societal BS surrounding what I “should” look like to meet the ‘norm.’  But I am finding out that I’m afraid to venture out into the real world because I feel that people will be staring at me because I am suddenly different.

I am struggling with the fact that I have three large social functions coming up this weekend. As of right now, I cannot use a prosthesis breast form because my wound has not recovered enough and I have not been prescribed one at this time. I am already trying to decide what I will wear so that I will feel comfortable surrounded by people who knew me before my surgery. It is crazy because I find myself trying to make sure whatever I wear will also make them feel comfortable being around me! How crazy is that??

The grieving process is real and painful! I have said that cancer will not define me but it does until I can come to grips with the changes and the loss. I am truly struggling with this thought process. I am someone who is really social and I just want to hide right now. This will pass…I know that it will. I have to remember that I can have down days, sad days, angry days, bad days, and that I have to grieve the loss of part of me. I have to remember that I have to be able to allow myself the latitude to experience all of these feelings and not feel guilty for feeling them.

The Three “B’s” January 5, 2017

Last week I had my appointment with the plastic sturgeon who is going to do my reconstruction, etc. after my mastectomy. I have been doing my due diligence in my research regarding breast cancer and all of the options that there are for all of us traveling down this path. Trust me when I tell you that I have done my research.

I went into this appointment armed with what I want to have happen to my body…at least I wanted to have some control over something body-related since I heard the dreaded, “I hate to tell you this…but you have cancer” sentence. I have hated the loss of control that I have felt since Thanksgiving. I wanted to be as pro-active in my treatment and recovery plan as possible.

I’m sitting in the waiting room and I just cannot help but wonder about everyone who is sitting around me. I found myself saying a prayer for them and their families because I know what they are going through, and it’s a struggle. A struggle to find answers, a struggle to have answers to the questions asked by those around us, a struggle to make sense of what my body will look like after this surgery is done, a struggle to understand why my body did not fight off this tumor, a struggle with my self-esteem, a struggle to know what the future holds, a struggle to face and be strong for those that I love when I just want to cry, a struggle to know what to tell my co-workers, a struggle for so many various reasons, a struggle to understand why every time I walk through these doors my blood pressure raises above normal (the nurse called it Roswell syndrome), just a struggle… It is important to say that I have an amazing support system who help make that struggle more manageable!

I’m sitting in this cold office, in my gown that opens in the front, waiting and waiting. The doctor and nurse come in to discuss the plan of attack. I told him all about my research and how I want to proceed with my reconstruction and recovery. And once again, I have done a ton of research because I like being informed and knowing what my options are going to be. The look on his face was troubling to me and then he proceeded to tell me detailed reasons why “my options” for reconstruction would not work right now.

Have I said lately how much I HATE cancer!!

He told me that my best option would be to have the spacers put in for implants instead of doing the TRAM or DIEP flap which would use my own tissue and fat to construct my new boob. I explained to him that I do NOT want to face the possibility of having a rejection issue with the implants. I have had rejection problems with cadaver bones after my second neck surgery.  I  want the nipple sparring procedure done because I want to be able to look at myself in the mirror and be happy with my own body image. He told me that my body mass index (BMI) is too high and he is worried about complications with preforming either of the flap reconstruction surgeries and possibly the nipple sparring too. So in essence, I weigh too much to have the surgery that I want to feel my best about my body!

This was devastating news because nowhere during my research did it say anything about BMI and/or weight being a consideration for these procedures. The research told me that there could be immediate reconstruction after the mastectomy but I guess that is not necessarily the case. He told me that I would have to loss about 70 lbs….this means that I will only have one boob for quite awhile!!

I am having such a hard time wrapping my head around this new development. We live in a society that focuses on what I call the three “B’s.” Beauty, Body, and Boobs. Our society often times forgets about the most important “B,” Brains!  I know that I do not need  my boobs to live. I am beyond thankful that the cancer was discovered early. So don’t get me wrong, I am blessed. I am just worried about how others will perceive me and let’s be honest…I worry about how I will perceive myself. I am not sure how I will feel the first time I have to look at myself in the mirror and see only one boob.

It is time to start breaking down these body image barriers for the health and safety of everyone who is struggling with these barriers. It is time to stop banning and removing pictures of women who have decided to “expose themselves” to the world on FB so others will have a better understanding of breast cancer and what happens to our bodies after the surgeries.

The key for me is to educate men and women across this country, and the world for that matter, about the importance of self-exams, mammograms, and breast care in general. We cannot effectively education the masses when society, directly and/or indirectly, puts such stigmas on what we should look like, and that anything other than ‘perfection’ is outside the norm. As I stated earlier, we can live without our boobs!! However, it is dealing with the backlash from those in our society that can often times create a pressure cooker due to fear driven by a body image culture!

At the end of the day, I will live my life!! I will see my granddaughters grow up, I will be able to love, laugh, and travel, I will finish my degree and get my dream job, I will continue to help others in need, I will continue to use my experiences to teach,  I will be able to check more things off my Bucket List, I will continue to make mistakes and grow from them, I will learn to live without a boob until I lose the weight, I will be healthier because of this cancer, I will live life to the fullest, I will…the list goes on and on!

I want my experiences with this disease to help others make the decision to get a mammogram and do self-exams, no matter if you are a man or woman, to make sure that people know that you do not need to feel something in order to have something wrong, to make the decision that fear will not rule your life,  to take this opportunity to educate, educate, and educate some more, AND to work on breaking down the societal culture regarding our bodies and what they should look like!!

Please schedule your mammogram today…if you have dense breast tissue, please opt for a 3D mammogram. My doctor said they would not have found my tumor without the 3D procedure!

Strive to be your own best advocate when it comes to your health, stick to your plan even if it means not getting the immediate results that you desire, follow your gut as it is usually right, and love yourself no matter what society says about you!!

This cancer will NOT define me…I will define it! #CancerSucks

Cancer! It is Hard! December 30, 2016

Cancer! I think this is one of the scariest and ugliest words in the English language. How can a word that only contains six letters be so terrifying?

I walked out of the parking complex yesterday and in front of me loomed this huge building. Its architecture is quite impressive with its large windows that beckon to the sunlight and views of the Buffalo skyline. But at the end of the day, it is a building filled with people. People from every walk of life, every culture, every ethnicity, every race, every sex and sexual orientation, every socioeconomic background, there is so much diversity within these walls. You see, cancer does not discriminate!

What’s even more impressive are the people behind those doors. These people who are fighting the fight…the ones who fight to be strong, positive, and understanding of the feelings of their loved ones. The ones who have Googled and researched “their cancer” to become as educated as they can about this cancer, their treatments, and their survival rate. The ones who tell their loved ones that everything is going to be okay. The ones who are scared but try not to show it. The ones who try to put on a brave face every morning and face the day when sometimes all they want to do stay in bed and cry. The ones who are making decisions that they never thought and/or wanted to make. The ones who are looking cancer straight in the face and saying, “You will not defeat me!”

These people who are families and friends. They are devastated by this cancer news. They are trying to be strong and supportive. They are scared for their loved one. They are Googling and researching their person’s cancer so that they can better understand the fight that is to come. They try to hide their emotions as they support their loved one. For some, this is not their first time watching someone they love deal with cancer.

But let’s not forget about the people who have some of the toughest jobs in the world…each person working within this complex has a unique opportunity to change the outlook of the people they encounter during the day. They have to be compassionate, understanding, empathetic, tough, honest…sometimes brutally honest, dedicated, helpful, brilliant at their chosen craft, and the list goes on. The ones who continue to research to find a way to beat this cancer.

As I entered into the hospital, it struck me. Everyone within this structure was in the mist of life altering experiences. It is hard not to look at the faces of the people that I talked to and passed in the various waiting rooms. It is hard not to wonder about those life’s that will never be the same because of this fight. It is hard to determine who the patients are and who the family members are, in some cases. It is hard to understand the full extent of what I am about to go through. It is hard to know that my family and friends have to go through this too. It is hard to understand how that nasty six letter word has taken so many amazing people before their time. It is hard to know that there is something lurking inside your body that wants to snuff out your dreams and wreak havoc on your body, mind, and soul. It is hard to realize that cancer is big business. It is hard to make decisions that one should not have to make. It is hard!!

Stop the Bad Dreams! December 8, 2016

I woke up several hours ago because of bad dreams. Dreams of people walking out of my life because they could not deal with my journey with cancer. I finally got out of bed; after what seems like hours of tossing and turning and trying to shut down the visuals in my head. As I came out into the living room, I feel an instant calm come over me. The very first shreds of daylight are starting to lighten the surrounding hills which are covered with fresh fallen snow. It is so quiet and peaceful. I am mesmerized as I watch the beautiful snowflakes fall from the sky. This is reminding me of when I was a child and the numerous walks that I took with my Dad. He would always tell me that the snowflakes were diamonds coming from the sky and each one was unique and special just like each of us. I felt the tears fall from my eyes as this thought of my Dad as this message from my childhood enveloped me with a tranquil peace.

I just read this on FB…”NOTHING in the world can trouble you as much as your own thoughts.” This statement is absolutely true! I need to be doing something to get out of my own head! I know that I have joined the ranks of some amazing warriors and survivors but this does not make me any less scared and at times even terrified of what my future will bring.

Cancer can NEVER come at a good time in anyone’s life. I find myself wondering if I am still going to be able to stay on track to graduate with my Master’s degree in June!?!? This is my ultimate goal that I have worked so darn hard to achieve against all odds up to this point. The struggle has been real this semester with Mom’s serious health issues, juggling two jobs…only one now, trying to move to be closer to Mom, and now being diagnosed with breast cancer. I believe that I have the determination to achieve my goal of getting my degree but I now have to worry about whether or not my body will cooperate. Yes, I am very worried.

Are there any other survivors out there that can offer up some advise? I am open to hearing your words of wisdom!

The scariest day! November 23, 2016

I have decided to take this journey out of the private realm in hopes that I can help bring awareness to other people who are facing a similar journey of their own! This is my story…

On Friday the 18th of November 2016 (three days after my 54th birthday), I went in for a “routine” mammogram…this quickly turned into something far scarier. After the second screening, I was told that I needed to go in for an ultrasound because the doctor saw something on the films…by this time I was a bag of nerves and on the verge of tears. She walked me through the process and as I watched the screen I saw the black spot. At first, I was thinking this looks like a black hole against the other tissue. The doctor was calling out measurements to the nurse and now I am beyond scared. She said that she was “very concerned” by what she was seeing and asked if I could stay for a biopsy. She took biopsy samples from three areas.

The problem with going for a mammogram/with subsequent biopsies on a Friday afternoon is that the labs do not work on the weekends so I had to wait until Monday to get my results.The waiting is…so hard!!! I wanted information to process and not idle time to get inside my head. It’s a confusing place in there with everything swirling around as I was trying to make sense of what ‘could’ be happening within my body.

On Saturday morning, I posted on FB “I am in need of some prayers, energy, well wishes, etc. Thank you so much!” I felt that I needed some extra help from my family and friends!

It’s interesting because even after saying all that when the phone rang I was almost too afraid to answer it…I finally answered after about the fourth ring and I could tell by her voice even before she said, “I am sorry to have to tell you this…you have breast cancer.”

My world just stopped…I could not catch my breath…I asked a few questions like, “What stage is this considered? Will I need radiation and/or chemo? Are there different types of breast cancer? Can this be done right away?” My mind is screaming, “NO, not cancer!!” So many thoughts have been clogging my head since last night.

Monday night, I posted “There are no words…..”  But yet, right now I feel strangely calm…scared but calm.

This morning I went in for my breast MRI and genetic testing since there is a history of breast cancer/issues on my Mom’s side of the family. The breast MRI will tell the doctors is there is any other cancer in either breast and/or my lymph nodes.

I posted on FB, “My head is spinning….so much happening so fast!! The Elizabeth Wende Breast Care clinic and the staff are amazing. Breathe Lori, just breathe!” More waiting…

They took a vial of blood to send off to be tested to see if this is genetic…more waiting……..this will take at least two weeks.

I was sitting in the waiting room after I was finished with my MRI and I was asked to wait because the doctor wanted to give me my results before I left. I have to say that my heart was in my throat and my stomach was turning as I wondered if there would be bad news…..

I posted on FB “So….I had the first bit of good news! After the MRI, the cancer is contained to the one spot! YAY!!!! I’m going to wait for the genetic testing to come back before I make any surgery decisions.” YAY!!

I have an appointment scheduled with the Dr. Yellin with the Breast Center Team on the 5th of December for a consultation…more waiting!  This diagnosis is definitely going to teach me patience!

The outpouring of support, love, caring, prayers, thoughts, hugs, and well wishes has been overwhelming!  Thank you to everyone for your love and support. Without your words of encouragement I would be floundering right now.

More to come…

 

 

 

#SUNYSA Bringing in the Spring 2015 Semester January 2, 2015

It’s been quite some time since I have posted anything. My first semester of grad school is pretty much under my belt. I have a couple of assignments to turn in but WOW…what an amazing journey! One very important thing that I have learned over the last 5 months is that I have to set firm boundaries and make sure that I set aside “me” time! I am a bit of an overachiever so I really need to make sure that I am taking care of myself.

Since my last post, my life has been incredibly busy with SUNY SA and college but I have been loving it! I have had the privilege of helping represent our 465,000 #SUNYStudents with a great team of dedicated student leaders! We have been working diligently with student leaders from across the great State of New York on issues such as: sexual assault, domestic violence, LGBTA+, the Federal Perkins loan, diversity, sustainability, Veteran’s and Military issues and concerns, just to name a few. Please visit our webiste at: http://www.sunysa.org/ and our FB page at: https://www.facebook.com/SUNYSA for more information.

The Spring 2015 semester is just within sight! I know that our SUNY students will bring so much to the table this year because we truly have some amazing #studentleaders within this great system! I am looking forward to the initiatives, concerns, ideas, etc. which the students will want to address during the remainder of the 2014-2015 academic school year.

Next week, many SUNY students will continue to meet with Chancellor Nancy Zimpher to discuss their take on SUNY and their education. Chancellor Zimpher has been reaching out to our students throughout the state during the last several months and will continue work towards learning what the students feel is going right and wrong within each of his/her educational journeys. On January 13th, Chancellor Zimpher will be giving the 2015 State of the University address which will bring to light what we can expect to see happening within the SUNY system and our 64 campuses during 2015.

Here’s to a great beginning of the year 2015!!

Striving for Perfection (The Series) July 15, 2014

It has been a challenge living in a world in which I was striving for perfection. When I entered back into academia after a 27 year gap I was pretty scared but very excited. My lifelong dream has always been to attend college and to be the first of my siblings to receive a college degree. I have stepped outside of my comfort zone and recently received my BA in Photojournalism/Documentary Production. Over three decades have passed since I graduated from high school coupled with my survival in a car crash and a traumatic brain injury that left me feeling shattered and broken as I worked through the recovery process. My doctors told me that my goal of college would most likely not be in my future and those words made me work harder than I ever imagined that I could to achieve my dream. I have been fortunate to have had dedicated staff, faculty, mentors, and tutors to set up various tools to help me work and learn at the best of my ability.

In retrospect, this was a time of reemergence or rebirth because the process has changed my prospective on life as a whole. My eyes are now wide open to the discovery of life and I plan to live it in the terms of not what I have lost but what I have gained!

More to come…

#SUNYSA Pretty amazing! July 14, 2014

It is hard to believe that we are nearly at the half way point in July and only a couple of weeks from our first official SUNYSA Executive Committee (EC) Meeting, UAlbany is be hosting us for the first meeting.Thank you to everyone at UAlbany!!

The EC will have a great opportunity during our first ever SUNYSA Day at SUNY System Administration on Friday, August 1, 2014. The SUNYSA Day is meant to give all of us face time with top SUNY staff who will be providing us with up-to-date information on the SUNY wide initiatives and issues that concern our students.

I am pretty excited about the new format of our monthly EC meetings. We are breaking new ground with the Friday evening Town Hall Meeting in which any students from a campus within a 50ish mile radius of the host campus are invited to attend to discuss any ideas, issues, and/or concerns with the EC.  The meeting is also open to any alumni, faculty, and staff as we try this avenue to help us to better advocate for our #SUNY students!

This forum will help us to have a better understanding of the needs which will be addressed internally, with the proper SUNY staff, and/or as we move to formulate the 2014-2015 Legislative Agenda.

Another amazing aspect of the new format is to have the host campus establish a community service project for the EC, students, alumni, etc. to be engaged in while we are visiting their campus.  This project could be anything from donating non-perishable food items, gently-used children’s books or winter clothing to a hands on project on Sunday morning before we all head back home. Giving a hand up can truly change your life!!

Here is the list of our upcoming EC meetings and the Fall Conference location and dates:

2014-2015 Meeting Dates

August 1, 2014 (SUNY System Administration/University at Albany)

September 19, 2014 (Potsdam)

October 17, 2014 [Fall Conference] (RIT Inn & Convention Center, Rochester)

November 7, 2014 (Oswego)

January (Stony Brook)

February (University of Buffalo Undergrad/Grad)

March (TBA)

April [Spring Conference] (TBA)

We are looking forward to all of campuses getting involved with the EC. We are #SUNYStrong!