Barb M’s Story
Age at diagnosis: 59 years old
Stage at diagnosis: Stage Ib
Story posted: January 2008
I am a daughter, a sister, a wife, a mother of four, a grandmother of 9, a child of God — and most recently, an ovarian cancer survivor.
I have joined the sisterhood of ovarian cancer survivors with many other women who have endured the shock of having cancer, battling cancer with the surgeries and chemotherapy treatments and the continual fear of cancer recurring.
However, my cancer journey differs from the stories of so many women. Having spoken to survivors as young as 14 and one who was even pregnant, I share my story so that women of all ages are reminded of how important it is to always be aware of the very subtle warning signs of ovarian cancer.
And if you do experience unusual symptoms, my hope is that you will seek medical consultation even though you might be fearful of the results. Become educated regarding the facts and correct treatment so that unnecessary risks are avoided. Taking these actions offer you the hope of dramatically improving your chances for survival.
And so, my cancer journey begins…I was never sick and so I smugly felt as though, at 59, I had really breezed through menopause.
I was a doctor’s worst nightmare; I didn’t even go in for annual pap smears or mammograms, although my daughter frequently urged me to go. But by the summer of 2004 I began to reconsider her good advice as I was becoming increasingly fatigued, not just tired. I blamed the fatigue on a stressful job and of course, just getting older.
By fall I experienced some heartburn which I had not had since my last pregnancy 30 years ago. I blamed my heartburn on overeating.
And then out of the blue, I had the most unusual, urgent need to run, not just hurry, to the bathroom. Since I couldn’t think of anything on which to blame that symptom, I decided that my body (or was it the voice of God?) must have been signaling me that something was not quite right. Thankfully, I listened.
I went to my family physician on October 27, 2004, for what I expected to be a routine pap smear and a prescription for hormone replacement therapy. Unbeknownst to me at that moment in time, my life and my family’s was about to dramatically change and never to be taken for granted again.
Since I had no knowledge of ovarian cancer facts, I certainly had no idea that my symptoms — fatigue, urgent urination, and indigestion — are indeed some of the classic “silent” signs of ovarian cancer. I did not even get the chance to discuss my symptoms with my doctor because after my pelvic exam, without explanation, I was whisked off for an ultrasound. The ultrasound revealed the presence of a cyst on my left ovary, which was about the size of a large orange.
I was referred to an OB/GYN who confirmed the presence of a suspicious-looking cyst, and for the first time the word cancer was softly whispered… not for sure, but maybe. He advised me that I should be seen by a gynecologic oncologist, but I don’t recall that he explained why, or maybe I just wasn’t listening. All I heard were the words cancer and oncology!
I am not sure how others react to such news. I certainly did not anticipate I would react in the manner in which I did; until then I considered myself a very thoughtful level-headed person, but I became absolutely frantically hysterical. I wanted the cyst removed now, this minute, this second! I could not wait!
I worried how I would go about finding the right doctor, and I was deathly afraid I would have to wait weeks for an appointment. I was afraid that as I waited, the cyst, which I now envisioned to be a ticking time bomb, would rupture and cancer would spread throughout my abdomen. There were too many questions and no answers.
Without understanding the risks, I convinced my OB/GYN to perform the surgery immediately. He reluctantly agreed. He later told my husband that my inconsolable sobbing persuaded him to perform the surgery. In preparation for surgery, blood work was done, but even though ovarian cancer was suspected, a CA-125 blood level was not obtained.
My family physician later told me that he didn’t order the CA-125 blood test because my insurance would not cover the $100 cost, and the clinic wouldn’t pay for it. I wish my doctor would have explained the importance of the CA-125 and given me the option to pay. Had I known then what I know now, I would have gladly paid for the test myself.
I had a laparoscope-assisted vaginal hysterectomy and bilateral salpingo-oophorectomy (removal of uterus, fallopian tubes, and ovaries) the next afternoon. After the surgery, I anxiously awaited the pathology report results, praying no news was good news.
I received the news by a return phone call, and I was so glad I did not have to schedule and anxiously wait for an appointment to hear what I already knew couldn’t be good news. In looking back, however, I would have preferred the personal touch of getting the devastating cancer news from my doctor instead of his assistant: the pathology report confirmed my worst fears…..YES, I did have ovarian cancer, BUT there was good news. My cancer was staged at Ib – primarily in the left ovary with only a 0.4-centimeter follicle in the right ovary.
I owe much of my early-stage cancer diagnosis to my family physician, who detected the enlarged ovary via a pelvic examination, which I have recently heard is not routinely done these days.
I encourage women to request a pelvic exam, CA-125 blood test, and transvaginal ultrasound if experiencing any of the “silent” symptoms for more than three weeks. I am also grateful that during surgery my OB/GYN found no visible signs of cancer in my abdomen and that he took precautions while removing the enlarged ovary during the surgery.
Since ovarian cancer was now confirmed, my OB/GYN referred me to a gynecologic oncologist/surgeon because he was well aware that thoroughly exploring the abdomen and debulking ovarian cancer significantly reduces the risk for recurrence and increases the rate of survival.
Even though I know we discussed the logistics of my case, the surgery, pathology reports and probable cancer treatment was overwhelming. I needed some time to absorb it all and decide, emotionally, how I was going to deal with it.
I had many concerns at that time, but like many others before me, my primal instincts kicked in, and first and foremost I wanted to live. Without knowing ovarian cancer facts, I thought ovarian cancer was always a death sentence. I worried how I would tell the children — and worse yet, my mother? How would I stay positive and upbeat for their sake when my heart was aching?
I still had more fears than calm and more questions than answers. I soon realized that I was not alone in my cancer battle; God was there for me, and so I surrendered myself to his care. I immediately found an unexplainable inner peace knowing he would provide me comfort and strength, as well as continued guidance to my medical team.
I relied on my husband and family for much-needed emotional support, and we vowed that we would fight this cancer battle together, focusing on survival. And so, with my fears finally calmed, I was ready to fight the fight to do whatever it was going to take to live.
Less than one month after my first doctor appointment, I began the treatment phase of my cancer journey. First, the many tests and exams: always the blood work, CAT scans, and chest x-rays. I also had mammograms, an ECG, an echo, and much later a colonoscopy.
Then I met my medical oncologist and gynecologic oncologist — the doctors I prayed were going to save my life.
They were very concerned for me, and even a little frustrated that I had so foolishly put myself at great risk because
1. I elected to have a vaginal, rather than an abdominal, hysterectomy, meaning that cancer could have spilled or leaked into my abdominal cavity which likely resulted in incorrect staging;
2. The procedure did not involve a complete exploration or debulking to remove any cancer, and so now additional surgery was required; and
3. There was no CA-125 report to help determine the extent of my cancer and/or to help monitor my cancer during initial chemo treatment.
Due to my recent hysterectomy, the CAT scan was unreliable for an accurate reading, and it was too soon to have a second surgery. Therefore, the only option was to have three chemotherapy treatments, then the formal exploration and debulking surgery, followed by three more chemo treatments.
Usually, the debulking surgery is followed by the chemo treatments — and in some cases, stage I ovarian cancer does not require six chemo treatments. But because my first surgery was not done by a gynecologic oncologist, for the first time I realized I had unnecessarily put my life at risk.
Chemo treatments were scheduled, and I was relieved that they would soon start attacking any floating microscopic cancer cells. By this time I had finally gotten over the shock of the cancer news and had come to realize that if I was going to get through the treatment phase, I had better stay positive and remember that, by the grace of God and the power of prayer from family and friends, I might have cancer, but cancer does not have me.
I began feeling confident that I could conquer cancer because I was being cared for by a great medical team specializing in ovarian cancer treatment. I can’t emphasize enough how important it has been to me that during such a stressful time my doctors always treated me, the person, and not just the cancer. I would encourage any woman going through cancer treatment to find the doctor that meets both her medical and emotional needs.
And so the chemo treatments began. Even though I was nervous, the chemo treatments were surprisingly uneventful. I was relieved that anti-nausea medication would be administered during treatment and pills provided for me to take at home. And best of all, I got pampered by great nurses and volunteers who were at my beck and call to provide a choice of snacks, beverages, and (best of all) warm blankets and warm smiles.
The standard ovarian cancer chemo drugs — paclitaxel and carboplatin — were administered intravenously. Each treatment took five hours and was given at three-week intervals. After three chemo treatments, I was scheduled for my second surgery.
During my six-hour surgery, I underwent an abdominal exploration with multiple staging biopsies. Fifty-six lymph nodes and the omentum were removed, which I understand are removed as a precaution because they are the normal path in which ovarian cancer progresses.
Following the surgery, my gynecologic oncologist/surgeon and staff excitedly reported that they found absolutely no evidence of any cancer anywhere — and so I was cured! But my medical oncologist, who always keeps me grounded by being forthright and honest regarding my prognosis, has a more conservative view. He continues to be concerned, rightfully so, about the cancer having spilled or leaked during the hysterectomy — and of course, as always, the unpredictability of ovarian cancer recurring.
Even though the surgical procedure was explained to me, I still was very naive about how difficult recovery would be. I worried about whether I would survive the recovery: the pain, the tubes everywhere (including four drain tubes with bottles stitched into my abdomen), the need to sleep on my back (which I never do), the need to cough with 12 inches of stitches from stem to stern, and having to walk laps even when I didn’t feel like it. (Who would guess that walking around the nurse’s station could be as challenging as running a marathon?)
Finally, I returned home. At first it was tough struggling to get out of bed, getting to the sofa and back to the bed again, and still dragging around the drain tubes with bottles that felt like 5 pound weights. My dear husband stepped up to the plate to become my devoted caregiver even though there were many times I was not the perfect patient. I got an enterococcus faecalis infection from one of my drains but not from a perforated bowel as initially suspected, and had to take mega doses of antibiotics. But the human body is a miraculous machine and after only four weeks, my body did heal and I could once again stand up straight. And so it was back to more blood tests, CAT scans, chest x-rays and chemo treatments.
What were the side effects of my chemo treatments? I had the usual bald head, fatigue, nausea, constipation, chemo brain, and a white blood count issue.
What I was not prepared for was the intensity of the severe joint pain I suffered in my lower extremities from my first and second chemo treatments, likely caused by the paclitaxel. I think as a result, I still have mild neuropathy on the bottom of my feet, but consider it a small price to pay for the chemo killing my cancer.
Being bald wasn’t so bad, perhaps because I knew my hair would eventually grow back. I wasn’t the only woman in the world who was or had ever been bald, and I had a great choice of fashionable hats and caps to wear. I saved money on haircuts, hair color, and shampoo, and I saved time on shaving my legs and getting ready to go out! I will admit, though, that once I completed my chemo treatments, I wanted my hair back as soon as possible!
The washed-out fatigue, which usually didn’t hit me until the second day after chemo, involved lots of laying down and napping, having to watch Dr. Phil and Oprah every afternoon, and difficulty going up and down stairs. My energy level usually improved about a week before the next treatment so I planned my life accordingly.
I had the typical chemo brain symptoms: I was unable to concentrate on work or knitting, juggling multiple tasks and not remembering as well as I used to.
An elevated white blood count was noted at my fourth chemo treatment, probably as a result of my postoperative infection. So I got the magic Neulasta shot, which thankfully kept my white count within the normal range so chemo could continue.
My last chemo treatment was on May 4, 2005, and so I officially celebrate being in remission since that date. I even received a “Celebration of Life” pin from the nursing staff to commemorate my last treatment, which I continue to proudly wear along with my teal ovarian cancer awareness ribbon.
After my last chemo treatment, I remember feeling very vulnerable — a little like a baby bird that was being kicked out of the nest for the first time. I was no longer going to have the reassurances that my cancer was being kept off the radar screen, which I had come to rely on for so long, from my doctor, from the blood work, CAT scans and chemo treatments every three weeks.
But after reading on the Internet that such concerns are very common, I quickly moved on to rejoice in living each moment of each day to the fullest.
Even so, my cancer journey is far from over. I must continue to visit my medical oncologist to be sure my cancer has not recurred. I remember going back for my first recheck and being so nervous my palms were sweating, my hands were shaking and I was sure my blood pressure was off the chart. But my medical oncologist, whom I have relied on for both medical and emotional support these past years (so much so that I don’t think I could have made it without him), always came into the examining room with a warm smile and a friendly handshake and put me at ease.
My husband initially went to all my doctor appointments with me, and my doctor patiently listened to both of our concerns, answered all of our many questions, and reassured us that if my cancer recurs he will fight the cancer battle with us as aggressively as possible. And his ovarian cancer research work further reassures me of his commitment to do just that — not just for me, but for all ovarian cancer patients.
Even with all my doctor’s reassurances, I still worry about ovarian cancer recurring, but I do not let it control my life. I am retired now except for a part time job, and so I am enjoying what I like to do best: spending as much time as I can with my youngest grandchildren, gardening, volunteering at church, and representing MOCA at health fairs and talking to doctors and medical students regarding my ovarian cancer experiences.
I rejoice and praise God that as of my last doctor appointment on October 4, 2007, my cancer is still in remission, and I am thrilled that I have graduated to a six-month interval re-check schedule. But of course, I know that I must immediately alert my doctor if I detect any unusual symptoms.
How was it that I was able to transition from a frightened cancer victim to a confident cancer survivor? I certainly did not do it alone. I relied on the help of many others. First and foremost, of course, is my trust and faith in the power of God’s unconditional love and healing care, which has sustained me these many years. Additionally, each one of my wonderful doctors has played such an important role in saving my life. And of course, the love, support and prayers from family and friends and the strength and resolve of other ovarian cancer survivors, with the realization that if they can do it, I can too.
My family and I have learned so much on this twisting, uphill/downhill cancer journey — most astonishingly, that cancer can have a positive influence on our lives. We all learned that cancer is the ultimate wake-up call to live life to the fullest, allowing us the opportunity to stop and smell both the roses and the coffee, and treasuring and finding love and purpose in each day, as if it might be our last.