My Husband’s Story

A lot of you have asked or wondered if my husband Jordan would ever be willing to share aspects of how my Breast cancer affected him and our family. He has always said that he would someday, but feared he wouldn’t be able to put his thoughts into words in the same way that I have. I think it was something he would have gotten to eventually, especially if something happened and I was not doing well, but we got bit of a nudge a few months back when Good Housekeeping contacted me. They were interested in interviewing Jordan and I for a story about young families facing breast cancer. We of course said yes as it has unintentionally become part of my mission to share the side of breast cancer that so many hide, but this was a great opportunity for Jordan to share a bit of his story as well. I will admit he was hesitant at first, and in his words he feared he may “screw it up”. I told him that It was his call, but I did have one stipulation….. If he agreed to the story, he had to be 100% open and honest with the journalist writing the story.

Here is the article that GH published a few weeks back. The writer we worked with did a great job of capturing Jordan’s thoughts and feelings and Jordan joined me by taking one giant step out of his comfort zone, as he was honest and open in discussing a some pretty difficult topics. The truth is he too has suffered and is still suffering through all of this with me, just in different ways. In some ways he is suffering on an even deeper level than I am because he has to helpless watch and react rather than feel things first hand. Breast cancer didn’t just happen to me. Breast cancer happened to everyone who loves me.

We would like to note that the headline is a little deceiving. Jordan did take a lot of the photos that are featured in the article, however Sam from Shutter Sam Photography deserves a great deal of the credit for beautifully capturing so many aspects of the past two years, including all the aspects of this journey that are so difficult for others to see.

See the Good Housekeeping article here:

http://www.goodhousekeeping.com/health/a44239/husband-documents-wifes-cancer-battle/

#MyPersonalPinkTime #GoodHousekeeping #ShutterSamPhotography

 

Post Cancer Treatment Scans

(a MRI scan from the past 6 months. It seems they have found a need to scan my abdomen my wrist, my Brian, and my spine, but not the most important)

As promised, I have addressed the silence and I am opening the door back up. Here is a little glimpse into what has been going on in my world. A few months ago I shared that I had reached the 2 year anniversary of the day I started chemo. Although it was a VERY busy day at work, I was taken back to that pivotal moment in my journey with breast cancer more times than I can count. I was hopeful to be on the other side of things, and very grateful to finally be getting a little bit of my pre-cancer life back. However if you have ever faced cancer you know that it doesn’t take much to rip each and every hopeful thought out of your mind and replace it with doubt, sadness, and fear. Shortly after posting on my cancerversary, I unintentionally ran my fingers across my breast area as I so often do without even giving it a second thought now. After having breast cancer you do not have to put a self breast exam reminder on your calendar as the thought crosses your mind every single day there after. But this time something was different, my fingers came to a screeching halt and stopped quickly at the edge of a lump I hadn’t yet felt. My world stopped. I could feel the heat or fiery burn of an anxiety-induced hot flash rushing up from my legs and arms and filling my body. All of a sudden, my mind started racing  and filled with fear. My very first thought was, my cancer is back, and then the cycle started. Everyone cancer patient faces the reality that their cancer could return at any moment, and move to other parts of the body. In a way, I have actually made peace with what I cannot control and I have whole-heartedly promised that if my cancer does come back, I will again fight with everything I have in me. However that peace is still not preparation for your worst fear unfolding in front of you.
For me, my life has just started to normalize as I am finally back to work, I am just now getting compliments on the hairstyle that I didn’t choose, and have even started wearing my converted head scarfs as neck scarfs again. I have gotten used to being the .1% in that if something can go wrong it typically does with me, but I have stayed hopeful that my treatments worked and my cancer is gone forever. Although my inner optimism was trying to take control, the lump felt hard, it didn’t really move much, and it did not hurt which I know are all symptoms of a malignant breast mass. To make matters worse, the lump was in the exact same location as the very lump I found two years ago. I looked for any rationale I could find for the lump, but my mind was already spiraling out of control. I thought about how awful the treatments were on my body the first time around and worried that I wouldn’t be able to keep up the pace I have been working at in my personal life, with my advocacy, and with my work schedule. I worried about the fact that if my cancer had returned there is an even grater chance that it has moved even further than the lymph nodes and how at this stage oncologists no longer entertain the word cure. In an instant my mind again shifted gears and halted as I realized that I still have not had the breast MRI that my oncologist has been ordering to confirm that my treatments worked in the first place because my insurance is denying me. I again saw the faces of 3 different Radiologists saying “ you really need to get an MRI, because that is the only way we will be able to see the chest wall to confirm that the treatments killed the cancer cells that were left after your bilateral mastectomy”. Did the chemo and the radiation treatments work? Did the fact that my chemotherapy regimen had to be dose reduced by 20% make the treatments ineffective? After all, I was only able to receive 80% of the cancer killing drugs that are known to kill my form of cancer. And the obvious thought of having positive margins after surgery push it over the edge. My greatest fears were already coming to life in my mind. The dose-reduced chemotherapy regimen was no match for the cancer that was left after my Mastectomy and it really had been growing in my body ever since. Have I really been walking around with cancer in my body all this time? My heart was racing and my mind was spinning out of control. I thought about the conversation that I had with my nurse a few weeks back in sharing a dream that I had where I realized that the people who make the biggest difference in the world, do so because they ultimately die trying. I remember the goosebumps running up my neck when I actually muttered the words, “Seay, what if I am meant to bring my cause to the forefront of people’s minds, but I am meant to loose my life in the process to serve as an example. I remembered that I told her I was at peace with what I could not control and I have already committed myself to a cause that choose me but, and at the same time I am not ready. I will never be ready. Before I knew it all I could focus on was the words that John and Cindy, two friends who were taken by cancer, said to me in their final days…. “I am not ready to die, there is still so much more I want to see and do”. That thought. That truth. That has been my biggest and greatest fear since I heard the dreadful words. Having no choice in the matter and knowing that you will be taken is a terrible thought.  Accepting that my greatest fear could someday become my reality has been the hardest aspect of healing through breast cancer.

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Addressing The Silence And Moving Forward

Would you believe me if I told you that before cancer, I used to be the shyest most reserved person you had ever met, and I would have done anything to avoid talking about my own feelings, personal thoughts, or struggles?

2 years ago, Cancer was NOT even on my radar. In fact, Cancer was something that I thought happened to other people, not something that I thought would ever happen to me… Until it did.

As many of you know I found the lump myself, but not because I was doing a self breast exam. I found it because I had been experiencing really sharp shooting pains in my chest pains for at least 6 months. When the pain was bad I would push the palm of my hand up against my chest. That’s how I found the lump. I didn’t tell anyone about it for a few weeks, but my mind was filling with fear and all I could think about was the fact that cancer could take me from my family. After doing a lot of research I realized that I had to tell my husband….. and I had to make the call. I saw my OBGYN first. She said that based on my age alone most doctors would recommend watching it for 6 months, but she said she wasn’t going to take any chances with me because she had a family history of breast cancer. She sent me for a mammogram, an ultrasound and Biopsy right away to rule out cancer. After two mammograms, I was sent to have an ultrasound. My technician was about midway through the scan when she said she had to talk to the radiologist. She tried desperately to make it seem like a routine part of the process, but I was starting to see realize what was happening. She was gone for at least 20 minutes so I had a lot of time to let my mind wander but I was oddly no longer thinking all the scary cancer thoughts, instead my mind was racing with moments from my life that made me feel like that exact moment was all part of a bigger plan for me.

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False Progress

I was really impressed with the fact that I was actually able to fall asleep during a medical appointment for oh 3.5 minutes during today’s… Correction yesterday’s acupuncture clinical trial appointment. That was until it occurred to me that those three minutes of sleep tricked my body into believing it had gotten a full nights sleep.

So here I lay; with bloodshot and burning eyes, very achy joints and muscles, and a mind that is going a mile a minute. After several failed attempts to “power down” my body and my mind, I am now watching HGTV reruns and dreaming up passion projects, all while wondering if I should just fully give in, get out of bed, and write. I’m mean really, if I’m going to be awake all night, I should at least have progress to show for it right?

Early menopause induced insomnia and joint pain is the worst. Here comes sleep medication round two. Fingers crossed

‪#‎imtooyoungformenopause‬ ‪#‎insomniastinks‬
‪#‎mypersonalpinktime‬

Officially home

So we are officially on our way home from the airport and I see this on Facebook. No offense to my favorite person, but I think Ellen may have been a little tired or even a bit hung over after the Grammys. Don’t get me wrong, Tuesday’s show was awesome. I mean really, I got to see Ellen and the sexiest dad alive up close. But as I sit here laughing my butt off I’m realizing that Ellen was far more serious then she typically is when I was there. So in a completely grateful and appreciative way, I must say that the stars aligned for me to get tickets to Ellen’s show on the one year anniversary of the first day I was told I had cancer, which still gives me the chills, but they might have aligned a tad bit incorrectly. I think I was supposed to be at this show that was taped on the 17th, the one year anniversary of my biopsy (which could be argued as the actual day I was diagnosed smile emoticon, not only to see Adele and make both of my goals for 2016 come true, but also to see Ellen doing something so funny that not even she couldn’t hold it together. My stomach hurts I’m laughing so hard. I love Ellen.

‪#‎mypersonalpinktime‬
#‎ellenandadeleprankjambajuice‬

Special Surprise Gone Viral

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As most of you know, a very big dream of mine is coming true in a few days as I head to Burbank, CA to attend a live taping of the Ellen show with my very dear heart friend, Vicki, well a pretty special friend and former teacher who has become family over the years set out to make my trip a little more special.

She secretly enlisted the help of her niece Nicole and her friend Hannah to put a video together to send to Ellen asking her to take a Selfie with Vicki and I. Knowing that she cares about me enough to step out of her comfort zone and do something like this, means the world to me and the video alone is a very special gift. However things got a little more special today. Ok things got flat out crazy today. I can’t share a the details of what happened today, however I can share this. Fox 17 West Michigan, got wind of this my friend Alice’s video and contacted me to see if I would do an interview with them. Just like the interview back in March they were at my house with a camera crew in less then 45 minutes.

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A day full of appointments

Today was full of appointments. I started off with a little post surgery Physical therapy. Ok a lot of post surgery Physical therapy. I love Amy, but my the cording in my arm, chest, and neck do not. We are making progress and even broke one of the cords today…. I’m not going to lie and tell you that wasn’t painful. But, Like many things, I’m realizing this is physical recovery is going to be a long process. From there I met with a very special past nurse and got to chat with a very special previous doc for a bit as well, and then left for my plastic surgery appointment.

My surgeon made my day by telling me that I’m one of her most inspiring patients. Little does she know, she’s pretty amazing herself. It’s a funny feeling to know that your doctors are following your posts, but I only have great things to say about everyone on my medical team so the more I think about it, I am glad that they stop in from time to time to hear that they are loved. It’s so important to feel good about your medical team. I feel pretty blessed to have each and everyone of them in my corner.

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In honor of World Cancer Day…

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I would like to encourage every woman out there to do a self-breast exam.

BREAST CANCER REALLY CAN HAPPEN TO ANYONE…. The truth is not all women diagnosed with this awful disease are over the age of 50… over the age of 40… or even over the age of 20. Despite what we are often lead to believe, not all women who are diagnosed with breast cancer have a family history of the disease. Not all women diagnosed live an unhealthy lifestyle that includes low activity levels, overeating, smoking, or even the heavy consumption of alcohol. The harsh reality is; sometimes women who think they are doing everything right to take care of themselves and their bodies, still get breast cancer.

I am that person. I never thought it would happen to me, but I was diagnosed with breast cancer at age 33. I do not have a family history of the disease. I very rarely have a drink. I have never smoked and I stay pretty active. I knew the risks and I lived by them, yet it still happened to me. I am proof that breast cancer can happen to anyone, and more importantly, I am proof that breast cancer can happen to you.

In honor of those of us who are fighting and those who can no longer fight, I encourage you to be proactive in your own health and push those you love to do the same. No matter how old you are, it is important that you know your body, that you check yourself often, and that you ask your doctor to preform a routine breast exam, men included.

Early detection really does save lives.

‪#‎mypersonalpinktime‬ ‪#‎worldcancerday‬

Ellen here we come: A Journey 5 Years in the Making

Tam and VIc_1140

Have you ever had a moment where it seems like the entire universe aligned around you and something that you really wanted to happen but never thought was possible…. actually happened? It doesn’t seem real yet, but this is happening to me. As most of you know my journey with breast cancer really started when my Aunt Pam was diagnosed and lost her battle when I was in high school. Not many people know this, but when she passed away, I made a promise to myself and to her that I would someday honor her by getting involved with the cause. I did a few awareness campaigns while I was in college, but I didn’t really feel like I was making a difference until 2011, when Vicki and I came together to create a campaign to nominate Vicki to be a guest on the Ellen DeGeneres show and fulfill her wish to share her breast cancer story with the world. Since Vicki had referred to her time with breast cancer as her “pink time” we decided to create a “pink time” facebook page to rally support for her wish. “Pink Time” first became the reference used when discussing her journey with Family and Friends. As well, being the reference to the singer “PINK” whose music provided courage and strength while the chemo drugs were being pumped into her body. Our efforts weren’t enough to get Vicki on the show that October, but a very beautiful friendship was born between the two of us.

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