Share Your Story p5
I was never married, no kids. Until I had cancer I was very healthy—active, never smoked, reasonable weight.
Right around my 47th birthday (Sept. 2, 2010) I noticed more bloating than normal, but chalked it up to peri-menopause as I’ve heard plenty of women talk about how the shape of your body changes.
In January-February, I felt more tired than usual. I tend to be a night owl, but suddenly felt myself needing to go to bed at 10pm. That only lasted a week or two so I just assumed I was “fighting something off” like the flu.
I had my annual with my gyno on Feb. 22. I told him that I was noticing changes—my period was becoming more irregular, more bloating, etc. but he told me everything looked normal and that these symptoms were appropriate for my age.
In mid-March is when I started noticing abdominal pains. I went to my family doctor who thought it might be diverticulitis or something gynecological. He gave me a prescription for an anti-biotic (for the diverticulitis) as well as a prescription for an un ultrasound. But the next day I got my period and thought I was feeling better, so I chalked it up to that.
But within the next few weeks I noticed that the pains weren’t going away and I also started to experience pain during bowel movements. That really through me off because I didn’t think a gynecological condition could cause pain in that area.
Late March/early April were particularly busy for me both personally and professionally so I was not paying as much attention to this as I should have, but I was trying little things—eating differently, giving up coffee, etc.
Finally, on April 13, my gynecologist called—a full SEVEN weeks after my appointment—to tell me my PAP came back abnormal. I told him I was actually happy he called because I wasn’t feeling well. I used his tardiness with the call to get an appointment quickly. I also explained to him that I wasn’t sure if my pains were gyno- or gastro-related so he suggested I pursue the latter with my family doctor.
When I went for the colposcopy, I again expressed my displeasure with the seven-week delay. He told me “I would never put your health at risk,” but as soon as he performed the procedure he knew something was wrong. I wouldn’t stop bleeding—they twice packed me with gauze. I was there for several hours and by the time I left I felt like I had been raped. Without waiting for the results, he recommended Dr. Stephanie King at Fox Chase Cancer Center. He said the next step was a cone biopsy and he didn’t feel comfortable performing it in his office because of the way I bled.
As it turned out, the colposcopy came back negative. In hindsight the theory is that some of the cancer “dripped onto the cervix” causing the bad PAP.
My family doctor immediately ordered lots of tests—blood work, ultrasounds, cat scans, and a colonoscopy. And things were complicated by the fact that on May 5 I was heading to Holland for a 10-day bike trip, but he seemed to take this as a challenge to find out what was wrong before I left! He—not the gynecologist—ordered the CA 125. I literally got those results (I had a reading of 150) as I was pulling up to the terminal for my flight.
The ultrasounds and scans showed pelvic fluid and a suspicious area or two but no large tumors. The gastro doctor wasn’t able to complete my colonoscopy because he said I had a kink in my column, which is not unusual. So he sent me for a barium enema which showed no cancer in the colon.
I asked both of my doctors if it was safe that I go on vacation and they said yes—that whatever this was wasn’t likely to land me in the hospital in Holland. My appointment at Fox Chase was already scheduled for May 18. So I went and had a good time.
When I saw Dr. King on May 18, she told me she thought I simply had endometriosis (that could explain the pain and the elevated CA 125) and that the bleeding was caused by vaginal chemistry that was out of whack.
Still, she somewhat reluctantly scheduled a laparoscopy, a cone biopsy, and a D&C. The procedure took place on May 27; the bowel prep the day before left me in complete agony. Dr. King never completed the last two procedures as once she looked inside, she saw the cancer. She told me she thought it was stage I or II and I would need surgery and chemo.
My surgery was scheduled for June 16. She had offered me May 31 (she felt quite bad about telling me I had nothing to worry about) but she also said I had time for a second opinion. At that point I wasn’t too crazy about Dr. King! I had a friend with a connection at Memorial Sloan Kettering. Memorial Day weekend was absolutely crazy—letting friends and family know and trying to get the paperwork needed to get an appointment at MSK.
On Tuesday after the holiday, I planned to go the the office an tell my co-workers; I had plenty to do to prepare for an extended absence. But as fate would have it, I woke at 4am with excruciating pain in my right side. At 6:30 I called Dr. King (she had given me her cell) but no answer. At 7:30 I called 911.*
I was at the emergency room for most of the day. After several tests, the doctor believed it was my gall bladder and wanted to admit me. I told him about my diagnosis and asked him to call Dr. King. If I was going to spend the night in the hospital, I wanted it to be Fox Chase as I found it hard to believe this attack was unrelated to my cancer.
So I was treated to another ambulance ride. The next day they removed fluid from my right lung cavity and after a few hours, the pain subsided. In the meantime, I asked Dr. King if it was possible to move up the surgery. Two days later (June 2) I was in the OR.
The surgery lasted 51/2 hours. They had to remove part of my colon (so it wasn’t a kink—the lesions had wrapped around it) and gave me a temporary colostomy. At times, that made me cry more than the cancer. They told me I was stage IIIC although my oncologist believes I was IIIIA due to the fluid in my lung (although the tests released no cancer in that fluid).
I left the hospital on June 10; had my port put in on June 27 and started chemo on July 5. I went every week for 41/2 months; I received taxol every week and carboplatin every third.
Chemo was not as bad as I feared. I did experience nausea but never vomited. There was, of course, fatigue and I lost my hair. I never had to skip a treatment but there were come complications. I had an allergic reaction to the taxol the first time out so they had to give me Benadryl and drip it slowly. And because my white blood count dropped, I was injecting myself with Nupigen. Finally, there were numerous transfusions as my hemoglobin was very low.
I returned to work part time in August. I’d go to the office Monday and Wednesday and work from home a third day if needed. In September I turned 48.
I responded very well to the treatment. By mid-August my CA 125 was in the normal range; by late September I was in single digits, which is where I still live.
My last chemo was on Nov. 1. On Dec. 5 I had the reversal surgery for my colostomy. In January I returned to work full time although I say I didn’t really keep normal hours until February.
I am getting checked every two months and so far, so good. I am told the first 18 months are critical, but the fact that I am in the single digits is a very good sign. In April I am scheduled for genetic testing. My gut tells me this was not genetic because I am the youngest of the youngest and no siblings, cousins, aunts, or uncles have had cancer at a young age. Both of my parents are living (dad is 83; mom is 81) and although they’ve each had cancer (dad—prostate at 76 and mom—breast at 78) I don’t think that’s what happened here. But I do feel like being tested is the right thing to do.
So here I am, still feeling a few side effects from chemo (neuropathy in my feet, overall joint pain) and my digestive system is settling into a new normal. For the first time, I am attending yoga classes. I am embracing my new curly brown hair (it used to be red and straight) although truth be told I do wish it were red!
On Wednesday I’m off to Park City for a ski trip with friends. I’m not sure how much I’ll be able to ski, but there’s always the hot tub.
I had an absolutely amazing support system of family and friends to help me through all of this. I will never forget their generosity (more stories for another time). When I first got sick I was worried about being single—as it turned out I feel like it was a blessing that being single with no children has allowed me to have a much larger circle of friends, every one of whom came to my rescue at one point or another.
In September 2012 my Grandmother was diagnosed with liver cancer. I was in for what I thought would be a road to helping her recover. As she went through more testing, more cancer was found- this time we learned she had advanced bone cancer, in her spine and hips, but the doctors were confused and ran more tests. It turns out that both of these cancers were secondary cancers. They wanted to find where it started. I was upset, because did it really matter- they had already said it could not be cured. Why keep doing more tests. But they did. And they found Ovarian cancer, the primary cause of her sickness. My Grandmother went through one round of chemotherapy, because she had hoped they could give her some more time. After her first treatment the doctors told her that at most it would get her 6 months, but they would be miserable. Without treatment she had three. She opted out. They were right, she passed away on January 20, 2012 at home. Her courage and strength still amazes me. I hope that one day there is a cure, and no more grandchildren have to lose their grandmothers, or more husbands lose their wives, or children lose their mothers.
This Sunday, March 11th 2012 will mark the 8th anniversary of my wife’s passing from this horrible disease. She was 36 years old and we were two weeks shy of our 11th wedding anniversary and it was only three weeks after our daughter turned 6.
Christmas Eve was always one of Cee-Cee’s favorite days but Christmas Eve in 1999 was different. Her stomach was bothering her and she didn’t get to enjoy the usual feast that my family prepared. We didn’t really think it was anything to worry about and with all the Y2K stuff a week away, we were pre-occupied.
The discomfort continued after the New Year and she went to the doctor for an ultrasound where they saw a large cyst and we made an appointment to have it removed a week or so later.
January 28th, 2000 was a crisp, clear day. A little warm for January, but the bare trees and low sun reminded you of the time of year all the same.
When we arrived at St. Vincent’s hospital, we were laughing and joking as we usually did, that was the one thing that was always present in our relationship—laughter. We settled into a room and waited. The doctor came in and spoke with us, we kissed good-bye and Cee-Cee went in while I went into the waiting room. It was a little after 1 in the afternoon.
The waiting room was pretty crowded and there was a TV on in the corner, I was reading a book and barely noticed the time slipping by. As darkness began to fall and the waiting room began to empty, I started to feel an uneasiness. When the 5 o’clock news started on the TV, I was the only one left and was now concerned. The Doctor appeared in the doorway and he was white as a ghost. “We need to talk,” he said to me and we proceeded down an empty hallway. I had no idea what I was about to hear but I knew it couldn’t be good.
When he told me Cee-Cee had Ovarian cancer and that it had spread outside of her pelvic area, I felt like someone hit me in the head with a brick. My knees buckled and I felt like a lost child. He gave me some options and I said that I would rather discuss it with her. He pointed me to a phone but I couldn’t dial, I couldn’t even speak. I wanted to scream at the top of my lungs but I could do nothing but cry. I finally picked up the phone and called my mother and Cee-Cee’s sister Pat.
When Cee-Cee came to a few hours later (I think, time became a fog at that point) I was by her side. She knew immediately that something was wrong.
“What’s wrong with me?” she asked.
“What are you talking about?” I answered without being able to look her in the eyes.
“I can see the clock, I know something is wrong.”
The doctor was nearby, we both knew that I would not be able to deliver the news. When he finished explaining to her, Cee-Cee smiled (she had the most beautiful smile) at me and I saw a strength that I had never seen before and that I would never have. She said she would fight this and that she would win and she wanted to call her family. What still amazes me is that a still half dazed Cee-Cee called her family and assured them that she would fight and she would be okay.
The surgery was the following Tuesday and because of her age they were able to be aggresive and attack every cell that they could see and even some they weren’t sure of. Chemo was next and Cee-Cee once again took control, shaving her own head so that the disease wouldn’t control her. Six months later, she was feeling good and it looked like she was going into remission.
They always told us that if it was coming back, it would probably do so within two years. Almost two years to the day it came back. Cee-Cee once again was strong and defiant. She had the surgery and treatments and kept smiling the entire time. She even comforted the new patients while she was getting chemo, helping them deal with it as well.
Six months later, it was back again and this time it wasn’t going away no matter what. When the doctor told me that she probably wouldn’t make it another year I locked myself in the basement of the pizzeria that I owned at the time and broke everything I could get my hands on. I threw things, I screamed and yelled and then cried. When my parents got to me I was slumped against the wall.
The next few months were brutal, how could I look at her smiling and fighting, even while she was wasting away, smiling and fighting and I knew the end was inevitable and coming? That was the most difficult time in my life. I was resigned to what was happening, I was trying to prepare myself and she would still never give up. It was so hard to look at her knowing this.
Thursday, March 11th, 2004 at approximately 10:40 PM, Cee-Cee took her last breath and I was by her side. The most difficult thing that I have ever done in my life was the next morning, telling our 6 year old daughter that Mommy went to Heaven the night before.
The wake was on the Saturday and Sunday that followed and the crowd was so large that the funeral home opened three rooms for us. I was overwhelmed at the amount of people that came to say good-bye to her. Thinking about it now, I shouldn’t have been surprised. Cee-Cee’s smile and her faith, strength and courage touched many people.
In the year that followed, I was consumed by anger and it has taken me eight years and this site to finally allow me to air out Cee-Cee’s story. I truly believe that she watches over me and every thing I do, I believe she is always still with me and helped me through that dark year and helped me get my life back together. I still see her smile everyday, I miss her and not a day goes by that I don’t think about her.
Staten Island, NY
“Some 27 years ago, at the age of 66, my mother was diagnosed with ovarian cancer. Because she refused to go to a gynacologist she was being diagnosed with constipation at a hospital in Riverhead, NY & was sent home from there with a strong laxative. Her stomach became quite distended as a result of the fluid build-up from the cancer. She underwent a total hysterectomy, but by then it was too late. She was put on a regimen of Chemotherapy. Unfortunately, it didn’t work. As the surgeon predicted, she passed away within that year. Ovarian cancer is a silent killer. Please ladies, go for your annual gynecological exams, or if you experience bloating, or sometimes even abdominal discomfort frequently, please get checked right away. It could mean your life. My aunt & a cousin, no blood relation to any of my family, were also diagnosed with ovarian cancer, but luckily, it was caught early enough for a total cure & they’re still alive today, proving regular exams will save your life.”
“I was diagnosed December 24, 2007. Had surgery on January 4, 2008. I had just retired in Aug 2007, bought a new house. Then my world stopped for awhile. I was just going into the hospital for exploratory surgery. They could not find my left ovary on the sonogram. I was only to be there for about 3 days. I stayed for 8 days and was told I had ovarian cancer. Well, I knew no one who had this, so I had no idea what I had. I started chemo on Feb. 4, 2008. Was encouraged to get on the research program of 22 treatments. I did not want to do this, but was more or less talked into it. After the first 6 treatments, it was supposed to be just the research drug Avastin. In December 2008, I had a scan and my lymph nodes were enlarged, so he put me back on another cycle of a different drug. In April of this year I had 2 clean scans and have been off treatment since. I go in September for another scan and it will determine what happens with that one. In January 2009 my husband was diagnosed with prostate cancer. He took 42 treatments of radiation. I still have some neuropathy in my feet. Have just a gem of a doctor and team of nurses. But over all doing well.”