“My Voice” by Robert Marraro

When Your World Comes Crashing Down Around You

I remember that day long ago when my world as I knew it would be turned upside down and inside, out. It’s forever etched in my memory. It was the day after Thanksgiving, 2001. I was blessed and thankful for many things, but my feelings of gratitude evaporated quickly. Life, for all practical purposes, came to a complete stop.

My fiancée Rebecca, 30 at the time, was suddenly diagnosed with Stage IIB germ cell ovarian cancer on the operating table. What she thought would be a routine surgery to remove fibroid tumors resulted in a complete and radical hysterectomy with metastasis to her rectal area. Never mind the fact Rebecca had three previous surgeries to remove these tumors over the 10 years prior. Never mind the hormone injections of Depo-Lupron she was given causing her to do some really squirrely things. Never mind the monthly menstrual cycles that would literally debilitate her.

I hadn’t realized it, but my status of becoming a Co-Survivor was unfolding in those early days. You see, we were living a life of happy, ignorant bliss. Life was about as good as we could expect. We were in Washington, D.C. I was in records management as a federal contractor, and she was carving out a living in public relations, marketing and special events planning and consultation. We adored our dogs: my two Dalmatians and her Lhasa Apso/Terrier mix affectionately named “Casey.” I went to work in the morning and came back at the end of the day with a long commute in-between. Rebecca had her own routine. We’d only lived there just over one year when the train jumped the track.

My only exposure to cancer prior to this was through my paternal grandmother, Nanny, who died when I was an infant of pancreatic cancer within six months of being diagnosed. I understand she suffered a horrible death. One of my earliest memories was visiting her on her death bed. My maternal grandparents died before I was born, and I only had my grandfather, Poppa, left. I didn’t realize until my 30s how I was robbed of my opportunity to enjoy getting to know Nanny and have her be a part of my life. Cancer stole something precious from me at a very early age.

I was at work that Friday morning when the phone call came. It was Rebecca’s mother. All she said was, “Rob, they found cancer.” I hung up the phone in total shock and disbelief. Rebecca mentioned upon her return from seeing her OB/GYN there could be the possibility she had cancer based on her latest symptoms. Just six months earlier, she had a normal check-up. Now she had a distended abdomen making her, in effect, 27 weeks pregnant. I remember after picking her up at Baltimore-Washington International Airport, we went to Baltimore’s Inner Harbor to eat dinner. Later during the meal, she said “I don’t want to alarm you, but the doctor thinks I might have cancer.” I didn’t believe and wouldn’t accept it. I reassured Rebecca letting her know this couldn’t happen and everything would work out.

In the back of my mind, that’s what I wanted myself to think. But there was a nagging, distant thought of what would happen if it was true?

We developed a plan. I couldn’t leave work to be with her because I had no leave available. She was to return to San Antonio, Texas and have the surgery without me. She’d recover in a few days and be back in DC by the end of the week. In actuality, she never returned to DC. To make matters more interesting, Rebecca didn’t have health insurance. This prevented her from receiving treatment immediately because she had to navigate the social service system trying to locate indigent health care. That cost us over one month of precious time because unbeknownst to us, the cancer progressed to Stage IV, metastasis to her liver and small intestine. One bright spot was spending Christmas with her. Rebecca looked good for just having major abdominal surgery and being as sick as she was.

Hooray! Treatments finally began. Her tumor marker, normally below six, was over 44,000! Three months of grueling chemotherapy began. Her regimen was two chemicals for eight hours/day for two weeks then a third chemical for two hours on one day the following week. You’d think she would have quickly responded, but she didn’t. The marker wouldn’t budge. They were starting to tell her to get prepared for much worse.

This was the bleakest time of my life. I’d just been laid off from work, had no money coming in the door and was separated by 1,200 miles from the lady I loved. Tears flowed like never before during this time. I had the good fortune to see her once more during Valentine’s Day – our eighth anniversary.

Finally in April, Rebecca calls to tell me her local oncologist was declaring her in “partial” remission because she couldn’t be certain whether the cancer was gone. We were instructed to go to M.D. Anderson Cancer Center. Hallelujah! She was cured. Rebecca decided it was best to remain in her hometown of Corpus Christi, Texas as she learned about what to expect two years, five years, etc. post treatment. She wanted to be close to family and her doctors in case something happened. That meant selling the house and moving back to Texas. I was adamant against this because my career would suffer, I’d make a small portion of my previous salary and was being forced to go somewhere I really didn’t want to be under a set of circumstances over which I had no control.

I never settled in and have yet to do so. Life pretty much sucked under this concept of our “new normal.” I suffered from post traumatic stress disorder, which continued for the next four years. I would cry uncontrollably, was frightened and scared, angry, and not looking forward to the future. Don’t get me wrong; I was extremely grateful Rebecca survived and had come through this relatively unscathed.

Life has never been the same and never will be again. Everything now revolved around the white elephant in the room: cancer. I had a very difficult time dealing with this. Fortunately though, I was able to be present for Rebecca and catered to her every need. I felt very bad for the way things unfolded at the beginning of this nightmare. I hadn’t been there for her when she needed me most. I had let her down and had a lot of making up to do.

Life went on until we reached her five-year milestone. We went to Las Vegas to celebrate the occasion. On the way back, we stayed in San Antonio to enjoy the Christmas on the Riverwalk. Little did I know life would change yet again for the worst.

Rebecca became mysteriously ill and almost ended up in the ER. This was only the beginning of what would lead to more trips to the hospital with overnight stays. Nobody knew what was happening. I knew in my heart of hearts she was sick again.

Fast forward to April 2008. After having fallen at a Relay for Life event, Rebecca was taken in traction to the town’s ER. A CT scan of her neck indicated suspicious activity in her thyroid. Back to M.D. Anderson we went. After several tests and a sonogram, two biopsies were taken.

The following day, we’re in the exam room with the endocrinologist oncologist. He gave us the news: papillary thyroid cancer, Stage II. Back in panic mode again. All of the angst, anxiety and fear came back tenfold. Surgery took place in June. Rebecca’s thyroid was removed along with 50 lymph nodes on the left side of her neck, eight lymph nodes around her trachea and one para-thyroid which couldn’t be spared because it was attached to the thyroid.

We began to prepare for radioactive iodine treatment, which would cause Rebecca to be in isolation for several days. We were getting prepared for a new set of side effects – blocked or non-functioning salivary glands and other assorted joys.

However, God had another plan. After being on a low-iodine diet for two weeks and receiving Thyrogen shots to keep her TSH elevated, we came to the oncologist so he could admit her into the hospital. She’d be looking forward to being given radiation by someone in a space suit and gloves handing it to her via a special bucket containing what she’d have to drink. He told us the cancer miraculously was gone. How many times have you heard any doctor use the word “miraculous?” No treatment was needed. Period. She was cured! She credits the intercession of Pope John Paul II who intervened in her cure.

To this day, we still make almost monthly treks to M.D. Anderson to not only monitor her neck but deal with the many significant residual side effects left over from her first cancer, most notably fibromyalgia and neuropathy. It’s never ending. Her quality of life is not good, and she lives at a constant pain level of seven out of 10. There doesn’t seem to be any relief in sight.

Something the oncologist told us haunts me every day: if you have more than one primary cancer, the possibility of getting another cancer again in the future is highly likely, and not only once but multiple times. The upshot is she’s more than likely to survive any future cancers rather than die from them.

So, let’s see. What a wonderful life to look forward to if every five-seven years we go through the same drill as Rebecca gets diagnosed with other cancers. She and I accept that even though we’d like to grow old together and enjoy what we can from life, she’s going to predecease me. That’s not what I wanted and isn’t something to look forward to with anticipation. It’s sad and disheartening.

What words of encouragement can I pass along to other Co-Survivors? First, no matter how bad things seem to get or how bleak the outlook, don’t ever give up. Hold on to your faith because you’re going to need it and rely on it to sustain and uplift you along the journey. Count your blessings along the way no matter how small they may be and don’t overlook the good things. They’ll be few and far between, so savor the moments when they come.

Never lose hope. Once you do, the game is over. Be convinced everything will work out for the best, even if it means death. We don’t know what God’s will is for our lives, but we need to be prepared for any eventuality. As a caregiver, make sure you take care of yourself. You’re of no use if all you do is take care of your loved one. You’re not being selfish, just smart. You have needs and feelings that need to be addressed. Plus, life outside your situation continues to go on. Be a part of it as much as you can.

Resolve to turn lemons into lemonade. When the tough gets going, you need to get tougher. Don’t let cancer dictate the dynamics of your relationship and the amount of love and compassion you’re capable of giving. I’ve heard the unfortunate stories of when spouses and significant others bail out their relationship and leave the survivor stranded when adversity rears its ugly head. Don’t let that happen to you. Keep your identity and don’t forget to remember what’s really important: your love and commitment to the survivor for whom you provide care.

I wish we didn’t have to go through this experience and take this journey. I wish life could have turned out differently. However, in the end, I’m a better person for it and have only grown to love Rebecca more and more each day. She’s not the same person I first met – cancer has robbed her of so many things physically, emotionally, mentally. She is though, more beautiful today than she’s ever been before. She’s my heroine, my love and my source of inspiration. I only wish I could be one-tenth the person she is.

This storm cloud has a silver lining if you’re only willing to look for it. Treasure what God has given you. Don’t take another day for granted and live in the present moment. Be thankful for what you have and don’t focus on what’s been taken away from you. Resolve to move forward day by day, arm in arm and hand in hand together. And, let your “voice” be heard. We need you.

This entry was posted on Tuesday, May 25th, 2010 at 10:49 am and is filed under co-survivors and tagged with Co-Survivor, Colon Metastis, Germ Cell Ovarian Cancer, Liver Metastis, Metastatic, Ovarian Cancer, Papillary Thyroid Cancer, Rebecca Esparza, Robert Marraro, Thyroid Cancer.