Disease: Bloating made you look pregnant?

CGK: 2009, AGE 47   

Jul 5, 2009 | Age: 47

PART I Diagnostic Lab CA125 Blood Test is connected to HPV Viruses.

Hi there. In June 2008,  I went for a series of exams, in particular the human papillomavirus (HPV) Variant test, which reported that I had been infected with a dangerous cancer variant. I then went further for a CA125 Blood Check test, and my levels were very high. Therefore, I experienced hellish pain in my “sitz” area (perineum), incredible pressure on my bladder, bloating and constant constipation. But I was really worried. My husband said I was just fat and shouldn’t bother the doctors and increase everyone’s health care cost. He told me to diet. Well, if I didn’t eat, I had no pain. OK, I’m large, but the pain was very strange. The bloating made me look pregnant.

This all began in little bits from May – June.

Finally, on July 7, 2008, when I could barely walk from the pain but was still soldiering on at work, I went to my primary care, who sent me immediately to a CT scan (run, don’t walk) and then to my OBGYN.

My OBGYN was marvellous, and after some more DNA results, she convinced me to have surgery. Surgery couldn’t be scheduled until July 31 because of schedules and vacations. I wonder if this month of delay made any difference.

In any case, the pain was also becoming intolerable.

July 31, 2009

On July 31, my husband dropped me off at the hospital (by myself), and I got admitted, etc. Fought with the CNA over whether I could take my glasses into surgery. I finally had her get another Nurse, and I gave them a piece of my mind. They said that people normally don’t come in alone, and I reminded them that my husband had left me at the door and that I would be alone until he came back around 9 p.m. So they “let” me have my glasses. JEEZ. When I told my doctor about this and surgery people (in the pre-op), they were like, “What was that all about? Glasses are no problem; we just put a sticker on the case.”

Even with the pending surgery, pain and fear, all I could think about was how I was planning on dealing with the customer service issues when I got out!

Grapefruit Size Cancerous Mass

Surgery revealed a grapefruit-sized ovarian tumour, malignant, and a large cyst, non-malignant, on the other ovary. The Ca125 tumour revealed there was something wrong. It required removal from my bowel and bladder, explaining my pain and inability to “go.” Total abdominal hysterectomy as the HPV history showed I had been infected for years and didn’t do anything to get cured. Appendix (sob!), omentum, etc., have all been removed. The Pathology Lab Test results were concerning CA125-related Stage III cancer. Questions lingered: Would earlier surgery have made a difference? Why was nothing detected in my April exam? Why did I stop taking birth control pills, with problems arising soon after?

By the way, I have spoken to other women in similar sitch who got cancer within a few months of going off BC pills at their request. Hmmmmm.

In hospital 6 days. Long recovery. Nearly 10 weeks before I went back to work.

Part 2.

Returned to work after 10 weeks, after Total Ab. Hyster. July 30. Pathology is a bit scary. Began Taxil/Carboplatin on August 25, less than 4 weeks after surgery. Made me sick, but the good thing was I had medical leave; time to learn how to deal with it. When I went back to work in October, I was still going through chemo. I would do the chemo on Thursday and work on Friday (they pumped me full of steroids, so I didn’t crash until the second day after chemo.) Crash Sat, Sun, and Monday, then drag myself to work on Tuesday. I am a pretty tough cookie. Even when I got really weak, I kept going -I don’t like to bother the doc. Managed to get through and keep working. One transfusion. The weakness was the worst part.

In January 2009, I was trying to decide on the next step after my HPV Lab Test result. After my exam, I decided on a break when my CA125 Levels were still high and the treatment needed to be adjusted. The doctor offered a masked study. Hmmmm, possibly no treatment in the study. Hmmmm. My husband didn’t want me to do more treatment—he wanted my time, trips, etc. (Mercy—are men selfish or what?).

The decision

The Test Specialist human papillomavirus doctor said I had twelve weeks to decide, so I took that time to regain my strength. Finally, I asked the doctor: “Absent the study, what would you recommend to someone with my pathology and family history?” Aha—I must know how to ask the question! She said, “More chemo. Taxil 12 mos. I will lose hair again.”

By the way, hair was never an issue. I bought wigs but loved being bald. It was easy to care for. It never bothered me; it just bothered the hoi polloi of West Hartford. It’s a parochial little town!

In March 2009, after my appointment, my Dad helped me decide on more HPV treatment—Taxil for 12 treatments, which isn’t that bad. I have a day to nap and knit. I’m very positive—looking forward to it. We went camping in June. Hiking, biking, and walking help a lot. Stay strong. I’m a warrior! Look out. I LOVE MY DOC. However, she is super smart and the BOMB. Totally. I am so lucky to have her on my side. God bless the doctors and nurses.

PART 3

Returned to work after a 10-week absence following Total Abdominal Hysterectomy on July 30. Despite unsettling pathology results, I commenced Taxil/Carboplatin treatment on August 25, less than 4 weeks post-surgery. Though the HPV treatment made me ill, having medical leave allowed me time to adapt. Endured six months of Taxil and Carbo, even returning to work in October while undergoing chemo. I juggled chemo on Thursday and work on Friday, thanks to steroids, but crashed on Saturday, Sunday, and Monday, mustering the strength to return to work on Tuesday. Despite feeling weak, I soldiered on, avoiding bothering the doctor. Managed to persevere with one transfusion, though the weakness proved the most challenging aspect.

In January 2009, I was trying to decide the next step. I decided on a break. The doctor offered a masked study. HMMMMM. There may not be CA125 treatments in the study. HMMMMM. My husband didn’t want me to do more treatment—he wanted my time, to take trips, etc.

Mercy – are men selfish, or what

Doc said I had twelve weeks to decide, so I took that time to regain my strength. FINALLY, I asked the doctor: “Absent the study, what would you recommend to someone with my human papillomavirus pathology Test experience and family history.” Aha – must know how to ask the question! She said. “More chemo. Taxil 12 mos. Will lose hair again.” March 2009 My Dad helped me with my HPV exam to help me decide on more treatment options. Taxil for 12 treatments. It is alright. I have a day to nap and knit. Very positive and looking forward to my Home kit. Went camping in JUNE. Hiking. Biking. Walking helps a lot. Stay strong. I’m a warrior! Look out. I LOVE MY DOC; however, she is super smart, as is the BOMB. Totally. I am so lucky to have her on my side. God bless the CA125 doctors and nurses.