Survivor Profiles
Janice Paulshock
I Live with Ovarian Cancer
Four surgeries later, Janice Paulshock feels very fortunate. Seems odd considering she has battled ovarian cancer since 1999. What she is grateful for is advances in radiology, surgery and chemotherapy and the Johns Hopkins doctors who know how to use them. “They are the reason I am alive today,” she says emphatically.
When she was first diagnosed at a community hospital with stage III ovarian cancer, her doctor didn’t offer her much hope. After surgery, a CT scan showed that her cancer was gone. However, her CA-125 blood test, which measures a blood protein that is usually elevated in a woman who has ovarian cancer, began to rise. Her doctor chose to watch and wait. Janice chose not to and headed to Johns Hopkins and a consultation with Robert Bristow, director of gynecologic oncology.
“Don’t tell me how bad it is. I’ve heard all of that. Just tell me what you’re going do to fix it,” she told him. Giving up had never entered Bristow’s mind. He ordered a PET (positron emission tomography) scan, a more specialized and detailed scan, and a new tumor was found.
Bristow performed surgery to remove the tumor and referred Janice to ovarian cancer expert Deborah Armstrong for chemotherapy with paclitaxel. Paclitaxel was one of the great research discoveries in ovarian cancer. In the mid-1980s, it was Kimmel Cancer Center researchers who developed delivery methods that allowed the drug to be tolerated by humans. After a series of clinical trials, it was hailed as the most promising new cancer agent in more than a decade. It is now part of standard therapy for ovarian cancer.
The CA-125 blood test was another key development in ovarian cancer research, and now the so-called silent cancer was making some noise that resulted in earlier detection of both new and recurrent disease.
In 2002, Janice had her third recurrence. By this time, however, laboratory research had revealed a new understanding of the biology of tumors. Understanding the specific characteristics of tumors allows clinicians to identify anticancer drugs to specifically target the biological mechanisms of tumors, killing cancer cells with far fewer side effects. This was the case with Janice. Bristow and Armstrong ordered an extensive study of her tumor and, based on the results, ordered outpatient chemotherapy with the drug gemcitabine.
In 2005, Janice’s CA-125 began to rise slightly from 12 to 16. Even though it was within the normal range of 35 or less, Bristow sent her for a PET scan. He told her about research done by a Johns Hopkins fellow that found PET useful in detecting ovarian cancers when patients’ CA-125 rises three points or more, as hers had. Sure enough, the scan uncovered two small ovarian tumors. Janice recently completed the last of a 12-cycle outpatient treatment with another biologic therapy.
“I feel great. I’m very active,” she says. “Life goes on. I know I have cancer, but I am active and feel healthy. I feel so good that sometimes I forget about my appointments until I look at the calendar. People need to understand that cancer is no longer this horrible, debilitating disease. It’s something you can live with.”
Rebecca Coder
My ovarian cancer adventure began in late August of 2005. I had strange symptoms that I had never experienced – bloating of my stomach, shooting pain up and down my right side, indigestion and finally a slight fever on Saturday, August 27. My mother always said, “don’t mess around with a fever,” so off to the local ER my husband, Christopher, and I ventured.
I was convinced I had an appendicitis. When the ER doctor returned with the blood results and said that was not the case, he gave me two options – either I could go home or I could have a CAT scan. I just knew something was not right and opted for the CAT scan. The result was an image that showed a large pelvic mass. The ER put me through some other pelvic tests and a sonogram.
Finally, ten hours after arriving at the ER, Christopher and I departed with this rather cryptic diagnosis and instructions to schedule an appointment immediately with a gyno-oncologist.
We gave the grapefruit-sized tumor a nickname, “sassy the massy.” We had a good cry that night and then Sunday got up and got to work.
My family has two rules about dealing with potentially serious illnesses – always get at least two opinions and ensure the doctor is the best in the field. I began tapping my network of friends, family and doctors.
I put together the short list of those who came highly recommended, all located in my home town of Washington, DC. And, interestingly for someone not far from Baltimore, it was more through web research that Johns Hopkins continually was referenced. “You will be in the best hands at Hopkins,” confirmed a top oncologist at Sloan Kettering in NYC.
I met with the gyno-oncologist connected to the ER that Tuesday. He delivered the bad news, “more than likely ovarian cancer.” On Wednesday, I met with Hopkins’ Dr. Giuntoli or Dr. G as he is known. I knew immediately that Dr. G would be my partner in the fight – amazing patient demeanor, vast experience, aggressive approach, and a collaborative, innovative team. I cancelled all the other appointments.
I was in surgery on Tuesday, September 6. Sassy the massy had spread. After eight hours of surgery, Dr. G and his team removed sassy and all the visible cancer -- optimal debulking as it is called. The final diagnosis, epithelial serous ovarian cancer, stage 3c. I was in the hospital for a week with a wonderfully caring and professional nursing team.
The surgery, hospital recovery and first few weeks at home were a blur. I don’t think I was even able to read a newspaper until about week two after the surgery.
And before I knew it chemotherapy started the third week of September. I was put on a three week cycle for a total of six treatments. Week one included an over night stay at Hopkins for the “big drip,” a 24 hour IV of Taxol followed by a four hour IP of Cisplatin so dubbed the “turkey basting” because at its completion, I had to spend 15 minutes on each side to ensure the chemo coated the entire abdominal cavity. Week two was outpatient turkey basting. Week three was freedom!
After about eight weeks – six weeks for post surgery recovery and a few weeks of getting used to the effects of chemo, I began to add back in the normal aspects of life including returning to work. Of course, there were new experiences thanks to the chemo side effects. My top ten included:
- Constipation -- Smooth Move herbal tea and a diet high in fiber helped
- Fatigue -- greatest day three after the big drip lasting three to four days; I watched a lot of the Food Network
- Weight loss – Odwalla Protein Plus beverage was a healthy, fruit-based alternative to the other protein drinks on the market
- Continuous nasal dripping -- Senator Arlen Specter had this one too; I resorted to my second grade teacher's style of tucking a kleenex in my sleeve
- Acid reflux – thanks to the turkey basting; I gave up acidic foods and took Zantac
- Muted taste buds -- totally lost my taste for champagne and wine – probably a good thing since you’re supposed to avoid alcoholic beverages
- Neuropathy -- funky tingling sensation in toes and fingers
- New hairdo -- akin to Natalie Portman's shaved head for the movie, V for Vendetta
Losing one’s hair is the most visible badge of honor many of us will have in fighting cancer. I deemed it “my science experiment.”
After returning home from surgery and prior to starting chemo, I visited Luigi, my Italian hair therapist, who gave me a short do. Very cute actually. I think this step was harder for my mother than me. “Doesn’t this bother you?” she asked between tears. “Mom, I am happy to be breathing, talking and enjoying normal bodily functions.” Vanity was not top of my list at this point.
Each evening, I would comb through the short do, watching a little more come out. I finally got to the point where endearing nicknames given by my husband became the norm. Most notable include:
- Linus – remember Charlie Brown’s friend
- The Cue Ball – complete hair loss at this point
- Chia Pet – a bit of fuzz returning in January after the final Taxol treatment
Currently, I am in round two or what I like to call “chemo light” to kill a tiny cancerous microorganism found during my second look surgery. These chemo side effects don’t compare to round one. I walk to work every day. Jog on the weekends. Enjoy dinners out.
Most of the time, I forget that I am fighting this, and then in a moment it hits me. “Holy Christmas, am I really going through this?” The most anxious times come when I am set to get results of some sort, especially the CA-125 -- currently a four (yeah!).
Inspiration for me really comes from the depth of love, prayers and support from my fabulous husband, family, friends, co-workers and the team at Hopkins. As my mother said, “Dr G. and his team have made an investment as great as you have in fighting this.”
And, I have a few quotes that I like to tap that puts it all in perspective for me…
“It’s not whether you get knocked down, it’s whether you get up.”
Vince Lombardi (1913-1970)
“Yesterday is a canceled check: forget it. Tomorrow is a promissory note: Don’t count on it. Today is ready cash. Use it!”
W. Somerset Maugham (1874-1965)
“Life shrinks or expands in proportion to one’s courage.”
Anais Nin (1903 – 1977)
So here I am, looking forward to seeing what the adventure of life holds next.
Susan Arnold 
DIAGNOSIS
My ovarian cancer was diagnosed in early July of this year (2005). Talk about ironic- I fell down a flight of stairs and went to see my doctor just to make sure everything was OK. My doctor recommended a cat scan because my abdomen was distended and it felt a bit lumpy to him. He thought it was probably a hematoma, which is a collection of blood that would eventually be absorbed by my body. I wish! After it was determined that my abdomen was filled with fluid and there were dark areas of "something" in there, there was an instant flurry of phone calls to set up an IMMEDIATE appointment with the Johns Hopkins Oncology/Gynecologic team. I guess I knew I had cancer at his point, but not which kind. The only women's cancer I was familiar with was breast because of my history with fibroid tumors in my breasts. I had always surmised that breast cancer was in my future, so I kept a prodigious watch on them with semi-annual trips to my surgeon for evaluation, mammograms and sonograms. I was very smug and proud of myself that "I was on top of cancer"!!!!!
The day of my appointment at Johns Hopkins, I was concerned, but not overly frightened, thinking that this cancer was in one spot, a simple surgery would wipe it out, and I would go merrily on my way. I remember only a small portion of the of the doctor's conversation with me because the news just kept on getting worse and worse: I did have ovarian cancer. The scan showed that it had spread throughout my abdomen. The survival rate was a number that I couldn’t cope with and to this day cannot remember. My husband was with me and he heard it all. What was there today? My surgery was scheduled and we managed to somehow drive home. I remember wondering how my husband was going to deal with this. It was difficult waiting the two weeks until the surgery. We tried to be positive, but at one point, I made my husband promise that if they should open me up and find the cancer so far advanced that it was only a matter of time, that he would tell me so I could make my final plans.
SURGERY AND CHEMO
The surgery was long, but uneventful and successful. My female organs (uterus, ovaries and fallopian tubes) were removed. The nursing staff was great and the team of doctors kept me informed about everything. Dr. Gardner, the surgeon, met with my husband after the surgery and felt positive that in the 7-hour operation, she had removed all the cancer that was visible to the naked eye. My cancer had NOT spread into the other organs or into the lymph glands. This was a HUGE piece of good news for us. But this was just the preliminary pathology report. At the next meeting, she was concerned that my cancer cells included a second type of cancer and was hoping that this, too, would respond to the chemo. She was more optimistic at our next meeting and said this was definitely treatable. I didn’t ask what she meant. Actually, I never asked what stage of caner I had. (I eventually found out it was Stage III). My asking was not going to change the stage and it was what it was. This was very unlike me-I always went through life CONFRONTING problems and asking ALL SORTS of questions in order to gain all the information I could. Now, I shield AWAY from questions and from reading the information I was given. For months, I would awaken each morning and hope this was just a bad dream. And then I would get this awful feeling in the pit of my stomach when I realized it was not.
It was decided that my chemo would entail six 3-wek cycles totaling 18 weeks. In each cycle, the first week consisted of an overnight stay whereby I had a 24-hour IV drip of taxol and then a 5-hour abdominal infusion of a different chemo. The second week, I had outpatient chemotherapy for 1 day, and the third week was a ‘vacation’ of sorts where I only had a doctor’s appointment and blood work but no chemo. I found the nurses and doctors at the Weinberg Center where I had my overnight stays to be experts in the chemo field, and as time went on, I came to know most of these health care professionals personally. Same with the physician staff. They all went out of their way to make this as easy as possible for the women. I was fortunate- I had very few, if any, side effects from the chemo for my first 4 cycles (about 3 months). After that, the side effects kicked in and it became a bit more difficult: stomach aches, acid reflux, loss of feeling in my feet, hands, and nose and a deep wariness. The good part was that at this point, I told myself that I was almost finished and then these side effects would be gone!!! I HAD gotten up the courage to read SOME of the information on ovarian cancer—the booklet on chemo and nutrition, which were a huge help, and also the basics of ovarian cancer. I read what I needed to know for each particular stage I was going thru at the time-nothing more.
I am now finished with my recommended 6 cycles of chemo. A cat scan will tell my doctor if I will need additional rounds of treatment. That possibility is not something I look forward to, but if it increases my chances for survival, how could I refuse it?
MY THOUGHTS
AS you have probably guessed, I do not see out statistics for my chances of survival. Statistics are based on PAST studies. Real statistics change daily. I don’t care about the past, only my present and future.
There are scientists and researchers who are this very moment making discoveries that are increasing my odds of survival. This is huge-don’t ever forget this. I will make my own statistics based on these and future discoveries.
Everyone has dark hours. The important thing I have learned is to keep the darkness for only these few hours and then go forward. Every nurse I talked with at the Weinberg Center related specific incidents in which positive-thinking patients attained greater survival rates than those with negative feelings and outlooks.
I have been humbled by outpouring love, thoughts, support and prayers not only from my friends and relatives, but from people I hardly know. Every day brings a card, email or call from someone who cares. My husband has set aside his life in order to be with me in this experience each step of the way. His emotional support has been invaluable, as has that from my children.
There are numerous sources of support out there for all women with ovarian cancer-take advantage of it. Remain positive. Go forward.
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