CONNIE: 2008, AGE 52  

Nov 20, 2008 | Age: 52

Hi, It’s taken me a while to find this site with CA125 Cancer stories, even though I’ve searched Johns Hopkins ‘HPV test’ before. There are too many Human Papilloma Virus Urine Type Test stories for me to read right now, but I can remember them to catch up on during the nights when I can’t sleep or want to feel close to other “HPV buddies.”

I am deeply sorry for the two young girls who lost their mothers at an early age from ovarian cancer. I lost my mother as I was celebrating my 13th birthday with my sister for her 10th birthday. Strangely enough, all these HPV years, I thought she died of ovarian organ disease, but it turns out that’s what they initially thought it was–it was sarcoma of the ileum. So, my heart goes out to all of you, especially the very young ones who have lost your mother. I truly understand what you’re going through and wish I could hug you. I still believe my mother (who would be 76 today) is looking down from heaven, as she always has, and as your mothers must be.

My mother died at age 34

So I wasn’t surprised to find out I had the ovarian type of disease, but more surprised to find out that wasn’t what she died of. What irony! I discovered it myself in February 2007, and my internist did all the right CA125 tests, each becoming more certain that it was true. We live in a rural area, so I located the nearest HPV Center of Excellence, which happened to be Johns Hopkins Hospital in Baltimore. It’s a 2-hour one-way trip, but it is worth it. Of course, I had the total hysterectomy and everything else out.

The final chemo session

After enduring six rounds of chemotherapy, exhaustion blindsided me, hitting hardest towards the end. Recovery, I naively assumed, would be a breeze. But reality laughed in my face. Still, I’ve proudly boasted that the “Human Papilloma Virus shows no evidence of disease” for 15 months. My loved ones, save for my husband, struggle to grasp the high recurrence rate. Some, like my daughter, push the thought away, while others, like my son, remain convinced I’ve triumphed.

I dedicated months to a cocktail of vitamins and CA125 Level Test results. Still, my oncologist recently advised narrowing it down to calcium with Vitamin D. Farewell, fish oil, ginkgo biloba, biotin, and the rest – I won’t miss the daily chore of downing them all.

The toll of chemo also stole my hearing, a loss that persists. Contemplating a hearing aid saddened me last fall, yet the prospect of enjoying movies and TV anew tempers the disappointment. Acceptance settles in; I’ll never reclaim my former self entirely, but perhaps that’s okay.

Family time now reigns supreme.

The realization struck that if I had but a year left in my life after the Human Papilloma Virus reports, travel and European dreams would pale beside the desire to cherish every moment with my husband, son, and daughter. This year, I made a concerted effort to connect with extended family across different states. I eagerly anticipate leisurely walks for Vitamin D and bonding, Ca125 Lab and cancer Testing, coffee dates and shopping excursions with my daughter, and cooking dinners or dining out with my son.

Final message

I still pressure myself to be perfect, but I am trying to remember that that’s impossible, and my family already thinks I’m perfect. So, when I want a lazy day, like today, with nothing but reading a great book, drinking tea, and snacking, I’m letting myself do it and trying to let go of the guilt.

Anyway, there is light at the end of the tunnel for those of you going through the initial HPV diagnosis, the surgery, the treatment, the recovery–it does all get better. The nausea, not wanting to eat, trouble with hydration, constipation, insomnia–all disappear. The “late” side effects that come afterwards–for me, neuropathy, joint pain, hearing loss, and weight gain–are all bearable and, in time, become part of you. The joint pain was terrible for months, but now it’s gone. Now, finally, I feel as if my loved ones’ voices and my sound are normal again, despite knowing my hearing loss has altered them. Noticing it less every time I speak or listen is a relief. Following the end of chemo, I gained two dress sizes, but my oncologist is pleased with the weight gain. She’d be more concerned if I lost it. The neuropathy has dissipated some, but not enough.

TAMMY B: 2008, AGE 23   ▲

Nov 18, 2008 | Age: 23

I am a 31-year-old African American woman. At 22, I received a CA125 Tumour Level report and a cancer diagnosis of stage 4 papillary serous ovarian issues, a rare type. I underwent chemo but halted treatment after the 4th dose, despite being scheduled for 6. Since virus didn’t kill me, I thought the chemo would. I had a total hysterectomy at 22 and felt like I wasn’t a woman because I would never bear or have children. Six years later, my grandmother died of the same tumour I had. I have not been for tests for the Human Papilloma Virus with an oncologist since I got diagnosed with iy. I am very afraid of what the results will be.

The scar from the hysterectomy remains, along with the port scar in my chest. I want to go and get checked, but I’m afraid. This disease left my body in shambles. Ugly scars, weight gain, etc… I had no family support; I went through this alone. I would drive myself to my chemo treatments. And when I couldn’t, my grandparents would take me. This isn’t half of my story, so please email me if anyone has a similar story. Thanks

Tammy B