June 1, 2014
Last Friday night, I had the ultimate privilege of meeting THE Robin Roberts!!! As much as I’ve talked about it this past week, a few people have actually looked at me with a question in their eyes “just who is this Robin Roberts and why are you so excited about it”. I proudly tell them, “ya know, she’s on Good Morning America, she had breast cancer, then MDS”, then I see a light bulb go off in their eyes – they remember who she is! I guess they don’t watch Good Morning America, or ABC news much! Oh well…..moving on.
When Robin Roberts was battling breast cancer, LONG BEFORE ME, in such a public manner, I admired her in how she handled herself; how she was always smiling, always so positive, always with gratitude – wow. Fighting cancer with such an amazing attitude – you go girl!
Then she recovered and came back on air, just as if, nothing had ever happened. I can remember when she decided to take her wig off and show off her stubble of hair growth and silently applauding her, and smiling too; sending her a high five through the TV. She did it with such grace! Just like she seems to do everything else.
And I admire her for that so very much. She had no idea she was becoming a role model for so many other women who would follow in her foot steps, including myself, in our own journey’s against breast cancer. How does someone even begin to express that sentiment to someone you only know through a morning news program and what the media shows us?
And bam….she became sick again, this time, with MDS. Not something easy to fight, she needed a bone marrow transplant. Before she could get the transplant, she had to endure the death of her mom, isolation and MORE chemo – isn’t once enough? I think so. But, yet again, how did she handle it? With grace, dignity, humor, a smile, and of course some tears; she is, after all, human. Understandably so, one of the hardest things she had to do, was separate herself from her fur companion, KJ. She describes in her recent book “We’ve All Got Something” just how emotionally difficult it was to turn KJ over to friends, how she cried, how she ached to just pet and cuddle KJ. I get that, I would be a mess if I had to separate myself from Wall-E during such a difficult time like that.
I had already read her recent book on my Kindle when I learned she would be in Dallas signing copies of it. There was no question in my mind, I would go get a hard copy and stand in line for whatever length of time it took to be able to have her sign it, but more importantly, to have the chance to tell her “you were my role model while I battled breast cancer” with some other things I wanted to tell her (grace, dignity, humor, etc). The ONLY thing that would have kept me from attending the book signing was if my grandson had decided to make a very early appearance and we had to go out of town (thankfully, he is still waiting on his own special day to arrive).
The night before, I stood at my closet trying to decide what the wear. Should I just stay in my work clothes? Should I take a pair of shorts to change into? What if we have to stand outside, in TEXAS? I’ll probably be nasty sweaty, shorts it is! Now, what shirt? Do I wear a breast cancer shirt? A survivor shirt? A dressier t-shirt type thing? AWE…….My “Overcomer” shirt! That’s it! She was in this video with Mandisa, that’s the one! And I’m so glad that I did!
I ended up being number 67 in line to meet her! She was taking her time with each and every person, chatting, taking a photo with them, signing their book. The closer I got, the more nervous I became. I was rehearsing in my mind what I wanted to say, praying I wouldn’t stumble on my words – I would probably never, ever get this chance again, I needed it to come out heart felt and eloquent.
While standing in line, there was a couple behind me, we chatted as we were standing there, they were kind enough to take MULTIPLE photos of me (with my phone) with Robin when it was my turn. while the staff used my little lame, point and shoot. I’m so glad I had them do this, since my regular camera photo is blurry :-(.
Oh goodness, when it was my turn, I was so nervous with excitement. I try so very hard to not place people to high on a pedestal, because, when they fall, who gets disappointed? Us – those who placed them there (something else I’ve learned the hard way through life). She is afterall a human, just like me and you! We (including her) make mistakes in life, that’s just how it goes.
As I walked up to where she was sitting, the first thing she said was “Are you an overcomer” as she reached out to hug me (EEK, Robin Roberts just hugged ME). I replied that yes, I was an overcomer (the shirt has the pink breast cancer ribbon on it), for 17 months now. I proceeded to tell her how she was my role model during my journey, and insert stumble upon words, how much I admired her for how she handled herself, for the rest of us to see. I honestly, don’t recall exactly what she said to me as she signed my book, kissed me on my cheek and told me to be blessed. Y’all, she was just as gracious in person as she is on tv. It was several HOURS before my heart stopped beating so fast, I was texting the photo of us to practically everyone in my phone, I was seriously, just that excited.
I am aware that she is meeting tons and tons of people on her tour of book signings, but I can only hope that something will trigger a memory of our brief meeting and she will smile with gratitude, knowing that what she does, what she’s been through, has honestly made a difference in just one person’s life – mine.
Maybe one day, I will sit down and write her a letter and include the photo of us together; more for me than anything else.
As wonderful as that moment was, I must switch gears and get back into what the purpose of this blog is really all about, the journey of breast cancer; the good, the bad, and yes, the ugly.
Because my cancer was estrogen fed, I am scheduled to be on some type of hormone suppressor for at least 5 years. There are 3 drugs in this family that I can take, the most well known being Tamoxifen. Since I was already on a drug that was working for me and known to work with one of the others, my oncologist put me on Femera with a warning that I would most likely experience bone/joint pain. I did, but it was a rare occurrence and when it hit, I would often times have to just sit and “be” because my hips knees and ankles would hurt so dang bad. But I was experiencing extreme fatigue. While I was still off work, it was normal for me to take a nap, and still be able to go to bed no later than 10 and sleep all night. I often found myself drinking up to 4 cups of coffee during the day. It wasn’t long after I started my new job that I realized this fatigue was really worse than I realized. Many nights, I was struggling to stay awake until 8pm before crawling in to bed. When I called Dr. O about this, she didn’t hesitate to take me off of it for a total of 6 weeks before starting me on the next one – Arimidex 1 mg (the lowest dose). I asked what I should expect in terms of side effects (I still do my best to not research stuff related to my cancer so it doesn’t freak me out any more than I need to be) and was told bone/joint pain and hot flashes. The bone/joint pain can often times be crippling and I hate to add more pills to my daily intake, but would if I just had to, but the thought of increasing hot flashes, well, that just wasn’t very appealing since we had my hot flashes under control while on the Femera. I had taken a total of 3 doses when the pain hit, my feet hurt so badly, they felt like needles were sticking into my toes, and my ankles joints were just plain painful, they actually felt like both were badly sprained. Thankfully, my hubby rubs whatever is really hurting the most to help give me some relief when I need it the most. I’ve now only been on the Arimidex for 10 days and I have to tell ya, I’m not as fatigued as I was on the femara, but when it’s time for bed, I’m more than willing to get there, and I sleep like no one’s business. Two comments were made to me last week that made me stop and think. My husband asked me if I was mad at him (which I wasn’t, not even a tiny bit) and a dear friend said she didn’t understand why everything she said to me was making me angry. My wheels started turning on those two statements (this was last Tuesday night). Wednesday, during the day, I noticed that many things that were being said, and various people were really aggravating me, and I was feeling weepy. So….Thursday morning, I called Dr. O’s office to see if mood changes were part of the side effects of this drug, cause this bites! I played phone tag with her nurse all day Thursday and decided Thursday night to go straight to the Arimdex website and look at what it had to say about side effects. Yep, you guessed it – mood changes. This now has me really thinking. But before I explain, let me publicly apologize to anyone who has thought (this past week) that I was aggravated, irritated or angry with you. Chances are, I was not and didn’t realize that my attitude and reaction to things were different than normal.
This has prompted a wonderful conversation in my online support group, where, well, frankly, no topic is off limits, we are free, welcomed and encouraged to share ourselves, how we are feeling, what are thoughts are, etc, and a more meaningful conversation with my husband. When I see Dr. O again on June 20th, I want to have a very frank discussion with her regarding the chances of recurrence on vs off of a hormone suppressor and my quality of life, whatever time I have left on this Earth (i’m personally praying a many years). I don’t want to walk around feeling irritated/aggravated by everyone around me, as well as feeling weepy. My sweet husband looked at me Friday night, as we sat in the parking lot at Wal-Mart (which is where we had this discussion) and he said to me something that I will always cherish. He said he knows what I went through, but he doesn’t TRULY know what I went through, what I felt, what my body experienced, what I was thinking, the pain I was experiencing, that only I know that – BUT, he would rather see me have quality of life versus a multitude of side effects. God Bless this man. I can’t tell you how it makes my heart SOAR to hear someone say all of that. I love that man. He and I both trust my oncologist with every fiber of our being. When we learned that I had breast cancer, we went to work searching for an oncologist who specialized in breast cancer and was ranked high in our metroplex. I simply wanted the best that I could get. It turns out, that the more survivors in my area that I talked to, the more I heard ONE name – Dr. Joyce O’Schaughnessy. When I researched her, I was not disappointed at all. Then I found out, she has to accept you as a patient, thankfully, she accepted me. Dr. O has served on the board of the National Breast Cancer Foundation, among many others. She is a researcher, is often the keynote speaker at conventions related to cancer, treatment, etc. Yeah, she knows her stuff. She is on top of all things breast cancer and you can tell that when you ask her a question; I love that about her. And she also maintains that you shouldn’t read stuff on the internet about cancer, treatment, etc UNLESS it comes from these website – The National Breast Cancer Foundation, American Cancer Society, Komen, or Chemocare. The rest are not considered trusted sites and we (cancer patients) should avoid them – and I sincerely try too, because, well, they still have the power to scare me. Several well meaning friends and family have said that I should increase my vitamins, get on Zeal, Spark, Herbalife, try juicing, try fasting for days, cut red meat from my diet, add only fish, do this, do that, stand on my head and drink green tea that is precisely 72 degrees (ok, not really, but you get what I’m saying here, right?) I KNOW everyone means well, and everyone wants me to be healthy, happy and to live a long life, but unless Dr. O blesses one of these things, no way Jose am I trying it, she knows what’s best for me and I trust her a bazillion percent, and I start by staying off the internet sites that can scare me senseless. The ONLY one I visit on what I would consider a regular basis is chemocare.com, whether it’s for me personally, or for someone who is about to undergo treatment, I prefer to not be freaked out by what I read, living with the potential (regardless of the percentage) that cancer could return is enough knowledge for me.
And now, there’s this.
I have sought out counseling. Let me be the first to say, HALLELUJAH! I had my first real session with my counselor yesterday (who is also a breast cancer survivor) and she helped me figure a few things out. We mostly concentrated on the anger I had in the very early days following the call that my mammogram was bad, in how it protected me from falling apart and not being able to get back up, how having something else to focus on was actually good for me – but now it’s time to let go of that anger, accept the person who caused it for who they are and continue to distance myself from the negativity that they bring to my life. Anger and stress are known to feed cancer and who wants that? Not this girl! She gave me a few things to try to help me move forward, to let go of the anger that I will try before I visit her again. I told her that I wished that the anger (the story behind it) wasn’t such a big part of my story, and how I don’t want to include it when asked to tell my journey. She told me to INCLUDE it, that I never know how telling my story, every single piece of it, could help someone else, for them to know what I went through, and how I overcame it, could help them. Then she said something that surprised me – she said I should write a book, WHAT? Me? A book? No, I don’t think so. This blog and my personal journal are enough.
She also helped me to understand (without even knowing it) why I feel no desire to really pick my camera back up – I’m afraid. Afraid that I’ll get back up on my feet good in my photography world and business and BAM will have that yanked from me again with a recurrence of cancer, and yep, that’s just the truth, that is exactly how I feel. I was in such a wonderful place in my life when the cancer was revealed, the fear is more in control than I realized. Finally, a piece of the puzzle fits, a BIG piece of the puzzle, what else is my fear keeping me from enjoying? I’m sure many things, we will tackle my fear (and still work on the anger) in the coming sessions, and for that, I’m so very thankful.
There is no way that you, my friends, my family, or you, the follower of this blog, can ever truly understand what I am feeling, what I am experiencing because you have not lived MY life – the same way, I can’t fully understand the things you are going through in your own life. No two journey’s are the same and that is what makes us all unique.
In closing, when I look at the ones I am connected to via that little pink ribbon, I count my blessings to know that many have walked before me, including Robin Roberts, who have helped researchers, like Dr. O know they need MY specific tumor tissue to be able to design the course of treatment that will be most effective for MY cancer treatment.
I am blessed to still be alive, to still be able to laugh, love, smile and experience all the beauty that is around me; and I hope that you feel blessed too.
Oh, one last thing. Did I tell you that I met Robin Roberts?
Here are a few pictures!