MOVING ON AFTER CANCER: MELANIE (FIRST IN A SERIES)

Many positives come out of cancer, and I admit I don't always write about them. But today I'm going to. The biggest ones involve the many new friends I've made since my December 2010 breast cancer diagnosis. I often refer to these friends as  The Rubies, and I'm fortunate to have several sets of such wonderful gems. 

Long before I was on Twitter, and about four months before I started this little blog...
I acquired my first set of rubies — at breastcancer.org (BCO). Diagnosed within weeks of each another, we were drawn to BCO looking for answers to our many post-cancer, pre-surgery questions. Over a period of months, what began as a large group of ladies popping in and out of conversations slowly simmered into seven women who were becoming fast friends. At the time (January 2011), we ranged in age from 26 to 52. None of us lived near each other, but we "talked" every day online. These ladies became my lifeline. They knew exactly what I was going through, because they were going through it too. 

One day in July 2011 we took our relationship to the next level: We started a closed Facebook group. But there was one hitch: We didn't know what anyone looked like aside from the tiny Avatar we used to represent ourselves on BCO. I knew many details about them, and felt connected by our common cancer experience, but I was not expecting the tsunami of emotions that hit me when I viewed their Facebook pages.

Imagine the scenario: I click from photo to photo, profile to profile, wall to wall, and watch the worlds of these seven women take dimensional form. I find myself drawn to images taken prior to their diagnosis dates. (It's like the car crash I can't turn away from.) I want to see the innocence in their smiles before The Big C changed their lives forever. I carefully study their faces, their children, their husbands, fathers, mothers, friends. I analyze each expression. For I know now what they didn't know then. And this makes me cry. Like, flash-flood kinda cry. I was sad for them, I was sad for me, I was sad for all we had lost.

Melanie after running her first marathon in 2010.

I was particularly moved by the images I saw of our youngest group member, MELANIE. She got breast cancer at a time in her life that should have been breezy and carefree. But life doesn't work like that. Cancer doesn't work like that. Melanie recently shared with our group a disconcerting experience she had, and I knew immediately it was something I wanted to write about. Then it hit me: Why not ask Melanie if she'd be my very first guest blogger? I'm happy to report, she agreed! And she did an awesome job. Please send her some bloggy love in the comments section below if you relate to her story.

Because I feel photographs express a person's personality and add dimension to a story, I'm including a bunch of pictures of Melanie (with her permission, of course) to illustrate the fullness of one young woman's life touched by cancer. So without further ado, I present to you Melanie's story, in her own words.

"Hi! My name is Melanie and I was diagnosed with breast cancer when I was 26, almost three years ago. 

Melanie (in maroon sweater), pre-cancer diagnosis.

At the time of my diagnosis, I was a very busy girl. I had a full time job as a nurse abstractor, traveling to various doctor’s offices in my area for a government-funded court investigation. I volunteered as a coach for a local school's cross-country team. I completed my first marathon. I had many church activities that kept me going all hours of the day. I also had recently moved back in with my parents after going away to college and living on my own for a few years. In my mind, this was a temporary stop before the next big adventure in my life.

That temporary stop has now become somewhat permanent thanks to the "C" word. I always imagined that the longest I would stay at my folks' place would be two years, but due to financial circumstances (which include proximity to the cancer center, along with the wonderful support I have from my parents), I’ve stayed put for now.

In December 2010, I learned I had invasive ductal carcinoma, Stage IIA, grade 3, with one involved lymph node. (I am ER+/PR+ and HER2-.) Once I was diagnosed, things moved pretty quickly. My oncologist told me to give him eight months to get through surgery, chemotherapy and radiation, and I could get back to my normal life. Eight months didn’t seem like such a big deal to me. I just wanted to live! So we moved forward with surgery three weeks after diagnosis. After much deliberation and praying, I decided to have a lumpectomy instead of a mastectomy, which my surgeon said she would prefer. The deal breaker for me was whether or not I got to keep my nipple. She told me no. So I chose the lumpectomy. I couldn’t imagine losing my breast at the age of 26; my oncologist supported my decision.

Five days after Christmas 2010, I had a partial mastectomy with an axillary node dissection and a PORT placed for the chemo I would later be receiving. My doctors would not give me the option to remove just the one cancerous lymph node because I had what is called extra-capsular extension (where cancer has spread outside the wall of the lymph node). And since my tumor's pathology was a grade 3, which my doctors said was pretty aggressive, they ended up taking out a total of seven lymph nodes.

Melanie with her pain pump.

My surgery took a couple of hours and although I was only scheduled to stay overnight, I ended up staying four nights due to uncontrollable pain and dizziness. I had the luxury of having my surgery at the same hospital where I held my first job as a nurse outside of college. My surgeon even gave me the option to be placed on the floor where I used to work. I said YES because I still knew people there and felt most comfortable there. It turned out not to be such a great experience. I could tell that my nurse was new because my IV was no longer in the vein. She continued to push morphine through it every two hours because I was in excruciating pain and I kept (literally!) screaming at her that I needed a new IV! 

Finally, after five hours, they sent the charge nurse in and he placed a new IV in my arm. The morphine still wasn’t really helping, and all I could dream about was some ibuprofen. I knew it would help, but no one would listen to me. My best advice: Never have surgery between Christmas and New Year’s in a teaching hospital. It is impossible to get a physician to your bedside. I kept telling my nurse that she could page the on-call doctor and he could come talk to me. I cried and pleaded … and about 12 hours later, he came and I finally got what I needed. From then on, recovery wasn’t too bad. My mom (who is also a nurse) removed my drain, and she was nice and gentle!!

After four weeks of recovery, I started chemotherapy. I wasn’t too excited for it, but I usually have a determined attitude about anything I do in life, so I knew I could do it. I wasn’t even really upset about losing my hair because everyone told me it would grow back and maybe I'd get those curls I’d always dreamed about.

Feb. 2011: Mel in a Mohawk.

I had six cycles of Adriamycin, Cytoxan, and Taxotere. I pretty much had every side effect under the sun. Extreme nausea was the worst. It always hit immediately, and we tried everything (and I mean everything!) to get it under control. My doctor finally talked to the pharmacist and he suggested a psych drug — and it worked! I didn’t really like it, though, because it would knock me out for 12 hours at a time. I tried to take as little as possible. 

About three months after my surgery, I developed cording in my armpit and pain that radiated down my arm. I was worried that it was lymphedema so I scheduled a visit with a lymphedema therapist. She wasn’t concerned and preceded to do physical therapy to loosen the cording. And BAM! One week later, I had swelling in my right (dominant) forearm and hand. Since that time, it has been an ongoing battle to keep my lymphedema under control. I have gone to therapy for months off and on over the past two years due to flare-ups.

After chemotherapy, I then had to start radiation. My doctor told me that even if I had had a mastectomy, I probably still would have needed radiation in my armpit because of the extra-capsular extension. I had daily radiation for seven weeks throughout the summer of 2011.

I thought radiation was going to be a breeze after my horrible chemotherapy experience, but I found it much more tiring. Since I lived so far away, I chose to move closer to the hospital for those seven weeks of radiation, and because I worked from home I was able to take my work with me. I also scheduled my appointments super early in the morning, so I wouldn’t sleep the whole day away. As it was, I would drag myself out of bed really early and end up sleeping most afternoons. Radiation was painful and exhausting and something I never want to experience again. 

Mel (left) ran a 10K after
Chemo #3 with her cousin Sara. (Notice
the compression sleeve on Mel's right arm.)

Two years later, I still have pain in my breast, armpit, clavicle and upper back from the daily radiation treatments. I wasn’t disheartened too much, though. 
I kept telling myself that this battle was only temporary, and that life would get back to normal once it was all over and it would be worth it to be alive.

Fast-forward to today — nearly three years after diagnosis —and things don’t feel quite so temporary anymore. I have a multitude of lingering side effects that make it hard to see the promised "temporariness" of the cancer treatments. I’m currently halfway through the five-year protocol of Tamoxifen, and it’s anything but a walk in the park. I continue to have pain from radiation and swelling from lymphedema. I also have hot flashes, fatigue, migraines, thin hair, thyroid problems, weight gain and still no menstrual period. Through all of this, though, my oncologist had a way of comforting me — and I always left his appointments with a more positive outlook. He always had a hug for me, and I knew he did for other patients, too, as was evident by the makeup smeared on his doctor’s coat collar. He had a way with connecting to his patients. He listened. He valued how I felt.

Four down, only two more chemo rounds to go!

Recently, I got a phone call from my oncologist saying he was moving to a new hospital but I would love the new doctor that was his replacement. I wasn’t sure that would be possible seeing as how I absolutely loved him — but I was willing to give this new doctor a shot.

I fully expected my first appointment to be like any other follow-up appointment. Lab work … waiting … seeing the Physician's Assistant … waiting … seeing the doctor … the typical schedule. Instead, I found myself bawling my eyes out the whole way home. (It’s an hour and a half trip, so that’s a lot of crying.)

I hate to cry. I feel ugly when I cry, and pitiful. I especially don’t like to cry in front of other people. I mean … what can they really do except give you some pity? Ugh! I hate pity. So I have never cried at the doctor’s office … ever … until this last appointment.

I wasn’t crying because the cancer had come back. No, I found myself crying over my thin hair. I keep holding onto hope that it will start to grow back, but the further I am from treatment, the harder it gets. All it took at this last visit was one sympathetic look from the Physician's Assistant (who is gorgeous, by the way) and I was crying a puddle onto the floor. I really miss my hair and the more time that passes, the more I miss it. I was fine with losing it. (I even shaved it into a Mohawk for fun before it fell out from chemo; see the photo above.) But I am devastated every time I see a picture of the back of my head and all I can see is my scalp.

I usually wear my hair two ways now to try and cover it up. It’s so hard because I loved fixing my hair! I braided it, crimped it, curled it, wore it up, wore it down, cut bangs, cut it really short, let it grow long, wore it half back, to the side, cornrows, or any other way I could come up with. I used to see how many days I could go without fixing it the same way. I’m envious of new hairstyles that I see on Pinterest. I want to try them! I evaluate other women’s hair and think of all the things I could do if I had their hair.

Feb. 2012: Melanie on a church trip to Hawaii.

I guess the emotional dam finally broke at my doctor's appointment; I was no longer able to be nonchalant about my thinning hair. I have never cried in front of the Physician's Assistant before, and she was very sympathetic, giving me advice, asking if I had tried wearing a wig, etc. 

But that was only making it worse. Every time I go to a medical appointment, they ask about my symptoms and side effects. And I go through the usual list that I’ve had for two years now (thin hair, weight gain, hot flashes, fatigue, lack of period, migraines, lymphedema, pain). So when I started crying, I surprised even myself, because I had been through all this before. For so long I’ve tried to just hold my feelings in because I know deep down that there is nothing they can do and it angers and annoys me. I’m not mad at any one person per se. I’m just disappointed because it seems that no one can truly understand how all this makes me feel.

By the time I met the new oncologist, though, I regained my composure from the crying jag and was a little eager to meet him. Despite all the turmoil within me, I still enjoy getting out and meeting new people. But things were immediately different this time around. Instead of a hug, I got a handshake. And the first thing he said was that my previous doctor had filled him in on my history and that "we didn’t need to rehash it all." I was a little relieved but also disappointed that he didn’t want to know anything from my perspective. Then he looked me straight in the eyes and told me (and I quote), “You just need to put the past in the past and move forward with your life. Let us worry about the cancer and tests and treatments.”

I sat there, stunned. I wasn’t sure why he even said that. Maybe the Physician's Assistant had said something to him? I don’t think he could tell I had been crying, so we didn’t even discuss it. I replied that I wasn’t worried about the cancer coming back. He said that was good.

From then on, though, the appointment was a blur. I was trying not to cry again because I felt like even if he noticed I was crying, he wouldn't really care to find out why. He proceeded to ask about my job (which I had lost three days prior to this appointment) and then we discussed my follow-up schedule. Throughout the rest of the appointment, he repeated that I needed to "move on" about four times. He said it would be good for me to get a job because it would help me to get out and socialize again. He never even asked about my social life! At that point, I shut down. I didn’t really want to talk to him anymore so I just nodded my head, trying to make it all end. When someone treats me that way, I don’t trust them with my thoughts or emotions. So I didn’t feel the need to explain any of my life choices to him.

Needless to say, I left that appointment feeling very defeated. I missed my old oncologist because he always made me feel better. He was reassuring and kind and sensitive to my feelings. This new oncologist made me feel like a complete loser. Like I wasn’t being successful as a survivor.

So what does it mean to move on? I kept pondering that question amidst my tears on the drive home. Since my diagnosis, I feel like I move on everyday. I have been on 29 flights: twice to Hawaii for mission trips, once to Mexico, multiple times to the Midwest for work, once to New York City right after hurricane Sandy, and once to Florida.  I’ve also gotten back into competing in run road races like I did before cancer. A few months prior to my diagnosis, I ran my first marathon — and I don’t want it to be my last. I travel to see family in other states because I value those relationships. I am really close to my aunts, uncles and cousins, and I feel so much joy when I’m around them. I continue to volunteer and coach middle school and high school cross-country teams. And I’ve picked up a new hobby: cake decorating. I've even taken several cake classes. How is all of that not considered moving on?

Am I not even allowed to be upset over what cancer did to me? I try not to let any of it hold me back, but I spend at least 20 hours each week taking care of my lymphatic system: I do daily manual lymph drainage massage, wash the compression sleeve I must wear every day, and I wrap my arm each night. There are so many things I must avoid on a daily basis to control my swelling, such as salt, mosquitoes, paper cuts, picking up small children, weight lifting, hot showers, hot weather, too much house cleaning, all animals, long sleeves, and tight clothes. I have to strategically fit in exercise because I must do lymph drainage massage before I work out and wait at least an hour afterwards before removing my compression sleeve. In addition, I still go to physical therapy and spend money on the custom sleeves, bras and bandages I replace every six months.

I no longer feel beautiful when I look in the mirror. I spend so much time trying to cover my scalp that it makes me just want to shave my hair completely off. I have to draw on eyebrows every day because mine never fully grew back. I have some sort of medical or therapy appointment every month, and continue to take Tamoxifen on a daily basis. How do you move past something that is a constant and hard reality?

I thought I was doing well. Like I said, I try not to let anything hold me back. I find a new way to do something or make adjustments if it’s possible. I’ve become very adept at using my non-dominant arm! Even after all I’ve been through I honestly can’t remember being filled with this much joy in my entire life. My faith in God is deeper; my relationships with friends and family are much stronger. The worse things are or may seem in my life, the more hope I have for the miraculous to occur. And why shouldn’t I have that hope? I’m 29 years old and I have a long life to live. I still fully expect to get married, have kids, and to make a difference in this world. I have new dreams of baking and creating things for a living that will bring joy to others, and leaving behind the nursing career I thought that I wanted. Post cancer, I’ve realized life is short and it’s important not to put off until tomorrow what you can do today.

April 2013: Melanie with her parents in Charlottesville, VA.

Needless to say, my first appointment with my new oncologist did not go so well. I’m not sure if I’ll go back to him. Moving on, for me, means moving on to something better. And if seeing this new doctor is going to cause such an upheaval in my emotions, than I don’t see this as better. I need someone that is going to be understanding, supportive and compassionate in every stage of my survivorship. Because it’s not just enough for me to survive; I fully expect to thrive. And I need people around me who expect the same thing.  

In the Bible, there is a story about a man named Job. God allows Satan to test this man by destroying everything in his life. All of Job's children and thousands of farm animals and slaves die, and Job's health is completely destroyed. Job loses everything and yet in all of this, he doesn’t curse God, even though his wife urges him to and his friends even suggest that his strife is due to some sin he committed. After a few years, God finds Job faithful and restores everything to him, giving him twice as much as he had lost.

I feel similar to Job. In a way I feel as if I’ve lost a lot these past three years. My health, stamina, and financial security have all been stripped away. And in this moment, I can choose to follow well-meant advice from people like my new oncologist who tell me to accept what is while trying to ignore my struggle and sorrow within. I can choose to carry that with me the rest of my life and let it rob me of all hope and joy. Or, I can choose to have more faith in a God that says nothing shall be impossible and live expecting to receive twice as much as what I have lost.

When I remind myself of Job's story and the hope that I have for complete restoration, I don’t care that my life doesn’t look how others expect it to. I remind myself that I’m unique and that there will never be anyone else like me, and it’s my responsibility to grow into the strong and courageous person God created me to be. It’s obvious from what I shared above that I grow weary, but most days, my faith is much stronger than my sorrow.

I wish my new doctor had taken more than five minutes to get to know the real me. The me that flies six time zones away to serve others in spite of how miserable I am with side effects from cancer treatments. The me that coaches 50 children every day into believing that hard work, teamwork, and dedication will get you far in this life. The me that was excited to meet a new oncologist because I know how important and special a doctor can be in a person’s life. He’s my coach. He’s the one cheering me on from the sidelines when I step up to the line. I wish all doctors looked deeper to see how courageous the individuals they treat are. And I wish all doctors took the time to consider the impact their words have on their patients. We’re not statistics, we’re human beings — and in my opinion, strong ones at that!

Melanie (at right) with her local high school's cross country team.

So, though my doctor's comments caused me a temporary moment of uncertainty, I KNOW that I am moving on. I know this because I have thousands of pictures that prove it.

I’m interested to hear if anyone reading this has encountered a similar situation? Has anyone told you that you need to move on and if so, how did it make you feel? Have you realized anything new about yourself from the statements made by others in your life?

PS Thanks so much to Renn for letting me share!"