Lisa’s survivor story

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.

Lisa
NJ

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