1. Tell us a little about yourself.
I am a 54 year old mother of two grown children (a son and a daughter) and the grandmother of two precious boys ages 4 and 2. The boys are my son's children, and they all live in Denver, CO. My daughter very recently moved back into our family home in order to help me through this cancer process. I am a certified registered nurse, working in the OB/GYN dept of a very large hospital. I am certified in maternal/newborn nursing. I am currently on leave from work. I have also had to withdraw from school for my BSN studies.
2. When did you find out you had ovarian cancer?
Sadly, I found out I had ovarian cancer this year, April 22, 2010, which is my son's birthday. It was not a good birthday present for him, or any of us. I hope we can have many years of happy, happy birthdays with him, and sort of erase this one less than stellar year.
3. Before your diagnosis did you know anyone with ovarian cancer?
I have never known anyone personally with ovarian cancer.
4. Can you share some of the symptoms that made you go see a doctor?
I went to the doctor, actually, many times. I continued to gain weight (especially around my waist and abdomen), felt bloated, felt incredibly fatigued. She tested my thyroid, which tested normal. I kept discussing with her how many different types of diets I was trying (Atkins, South Beach, Flat Belly, Fat Belly - the list goes on). In turn, the doctor suggested that clearly I was eating more than I thought, and should keep a journal of when, what, how much, how often I was eating. The fatigue I put down to working long shifts, being back in school full time ( I was to graduate with my BSN this December, 2010), taking care of a home, a husband, all our pets, etc. However, finally, on April 20, 2010, I went to the doctor because I was unable to urinate very much at one time, with the constant feeling of having a full bladder. There was a lot of discomfort. After the urinalysis came back perfect, the doctor pushed and prodded and felt like something might be lurking in my abdomen.
5. What kind of tests were done to determine it was ovarian cancer?
Two days later, at 9:00 AM, a pelvic ultra sound was performed. Since GYN medicine is my area, as soon as I saw the screen on the ultrasound, I knew I was in trouble. A very large mass covered my left ovary, was laying on top of my bladder, but was also striating out towards the right side of my body. There was also massive fluid trapped in my abdomen, called ascites. Ascites is never, ever a good sign. Later that day, an emergency CAT scan was performed, which revealed that the cancer had spread into my lymph system. This is never a good thing either.
6. What stage of cancer do you have, and how many stages are there?
Ovarian cancer has 4 stages. Stage 1 is the best stage, graduating in severity to Stage 4. Each stage has 3 letter grades also assigned, A, B, and C. If ovarian cancer is not discovered until Stage 4, Grade C, this is the worst and most threatening stage. Staging and grading cannot be accomplished until the oncologist has performed surgery and a pathologist has tested all the tissue removed during surgery. The original estimate in my case was Stage 3-A. However, after the pathology report, my cancer was upgraded to Stage 2-C. This means that although many other internal organs were involved (in my case, it was my bladder, my bowels, my appendix, and my lymph system), the cancer had adhered to the organs, but had not yet completely invaded the organs, with the exception of my lymph nodes. The surgeon was able to scrape away the cancer from my other organs, with the hopes that it would not return. However, my lymph system is quite involved, and therefore, ongoing chemotherapy is needed.
7. What made you seek a second opinion?
I never sought a second opinion. The doctor I began with is positively known as the best GYN oncologist anywhere. Patients come to him from the East Coast and from the West Coast. I knew his expertise was without question. I feel very lucky to have him.
8. How is ovarian cancer treated?
Ovarian cancer is treated first by the surgical process. The oncologist must operate to find the source of the cancer (obviously in this case, an ovary), how many, if any, other organs are involved or compromised, and to obtain tissue for pathology. After the surgery, ovarian cancer is treated with aggressive chemotherapy. In most cases, Taxol and Cisplatin are the chemo drugs of choice. Both are harsh, with multiple side effects. During my surgery, the doctor installed a peritoneal chemo "port." The port is supported by my ribs, under my skin and just under my left breast. This port is accessed by a long, fanged type needle that is inserted into my skin and into the port. The chemo then is infused through the port and goes directly into my abdomen, where it stays until my body absorbs every drop of it. Taxol is administered one chemo day via IV, and the next chemo day through the port. The Cisplatin goes directly into the port. Taxol is the drug that causes hair loss - which I am now experiencing. Both drugs cause extreme nausea, horribly achy joints (mine hurt from my neck to my ankles), and sharp, stabbing abdominal pain. Everything tastes like metal. Raging heart burn is another side effect. I never had heart burn before, and until you do - you simply do not understand how horrible that is. However, my doctor and the oncology nurses are constantly tweaking my pain medication and my chemo dosages, in order to better help me tolerate the side effects. They are an amazing, caring, empathetic team, and I am grateful to them.
9. How long will you be doing chemotherapy?
The plan for me is to do chemo therapy until November. That will be about 6 months. I must have weekly blood draws in order to make sure my other organs(especially my kidneys and my liver) are tolerating the chemo drugs. At the end of the 6 months, a PET scan will be performed, along with more blood work, to see if my remission is accomplished :)
10. How do you keep yourself occupied when you are in the hospital?
The chemo days are long, stressful days. I bought myself new books, and I read a lot while I am being infused. I also have lots of upbeat, favorite music on my ipod that I listen to. Occasionally, I just try to nap or rest. Because my port is located in a...well...delicate and personal place, I am lucky to always have a private room where my infusions take place. However, at the infusion center, there are cancer patients receiving treatment, chair after chair, room after room. It was a real eye opener for me. Until it is you, you simply have no idea of the struggles and heartbreak happening to people every moment of every day. I pray a lot too - for strength, for tolerance, for wisdom, for peace - both for myself and for the other patients going through each unique cancer experience of their own. Cancer, I have found, is a exclusive club, of sorts. Until you have it, you are not in the club. Once you have it, you are never out of the club - and people bond together in ways that are rather extraordinary. There is love and support amongst those in the "club."
11. Has your outlook on life changed since your diagnosis? If so, how?
My outlook has changed completely since my diagnosis. Nothing is the same. Things I considered the most mundane - like the ability to do laundry, or sweep the carpet of my house - even these things I am grateful to be able to do. The smell of early mornings, the variety and beauty of the songs of birds, the quick blink of a firefly - these things I cherish. My relationships with people have changed. I was always busy - working, school, keeping house, etc. It is very easy to become caught up in one's own little world and not reach out to others. This experience has taught me how important it is, and how much it means when people reach out to each other under dire circumstances. It makes me sad that I did not understand this before. I am still in the process of reevaluating my life and what is honestly important. I will have to keep you posted on this one...I am certain that I am not finished with this evaluation yet. However, I doubt much of anything, with the exception of my love for and from my family and friends, will stay the same. I want to LIVE out loud. So stay tuned :)
12. What have you learned about yourself?
What I have learned about myself is that I am stronger than I thought and weaker than I thought. I knew I had strength - I went to nursing school after being away from any kind of organized education for over 25 years. I graduated with honors. I began an amazing career. I became certified in my specialty - which is more difficult than nursing boards. But when you get a call such as I received - late on a Friday afternoon(from my family doctor that originally ordered the tests) - that you have not one, but two kinds of cancer(in my case, ovarian and lymphatic carcinoma), there is no inner strength that can sustain you. I fell to my knees and called upon the Lord. I had nothing within myself. The way my doctor made it sound, I might as well have checked myself into hospice that weekend and called it a day. She called my condition "extremely grave." And then said "have a nice weekend" and hung up the phone. She and I are going to have a little chat when all of this is over.
I have learned to accept help and comfort when it is offered. Again, not easy for me. I have learned that God's grace is real and it is sufficient. I have learned the true colors of my husband, my children and my family - and the color is pure, solid gold. Likewise with the friends that have reached out to me. I have learned that the promise of prayer is real - and that prayers of the people work in every possible way. I have learned that we do NOT know how many days we have on this good Earth - and that anger, bitterness and resentment are wasted, silly emotions. Laughter, love, a gentle touch, a smile, a kind word - these are the things that make life lovely - and these are the things we must reach for. Mostly, I have learned to experience each thing that every new day brings - and to be grateful for the opportunity to be alive. I am not afraid to die, Ashley - but I am not necessarily getting in "that" line just yet :)
13. What have been the biggest challenges?
The biggest challenges so far have been staying positive in the face of true adversity. Surviving chemo is a huge challenge as well. Chemo hurts - don't let anyone tell you it doesn't. In my case, chemo was begun so soon after surgery that my body was still raw on the inside. Introducing such harsh drugs had me literally doubled over in pain. Pain I rated at a good 6-7 out of 10, and I am not a sissy girl. It also gives one the feeling of the worst all over achy, nauseous, beaten up flu EVER. There is also the challenge of accepting a way different plan and life style, especially when you are - or were - convinced that you were on the right path and plan previously. Finally, the most painful challenge for me was watching what the news that I have a very, very serious and deadly cancer did to my husband, my children, my parents and my siblings. Such grief and pain etched in their faces - it has been heartbreaking for me. I never, ever wanted to be the one to inflict this kind of pain on anyone...and yet...I have.
14. Any advice for women dealing with ovarian cancer?
If any of your readers are dealing with ovarian cancer, CHIN UP! There are massive advances in this medicine...do please take heart. Yes, there is a long road ahead of you, and the fight of your life - but one you can win! Keep your sense of humor - always. Laughter, I think, just kills those nasty cancer cells. Read more - become educated about this disease. Knowing is ALWAYS better than not knowing. But read good books too - watch funny and favorite movies at home. Surround yourself with people that love you and can help you - and then accept the help! Stay as physically healthy as humanly possible under the circumstances. Walk a little (or as much as you safely can) every day. Watch for the little signs of God's love for you everywhere. Take advantage of all the programs offered you now that you're in that "club." The Victory Center is once such program...use it! Join a support group. No one knows - no one - what you're going through unless they have or are going through it as well. Get on prayer lists. Reach out and allow others to reach out to you. Stay positive. Fight with ALL your might!! And we women have an awful lot of that might!!
15. What advice do you have for women in general so they can make sure that if they have ovarian cancer, it can be caught early?
Ovarian cancer is a sneaky, nasty disease. It hides itself way too well. Only 20% of women are diagnosed before Stage 3. Be your own health advocate. Know your body. Pay attention to signs. Bloating, unexplained weight gain around the waist and abdomen, fatigue so severe you want to sleep standing up - these are hallmark signs. INSIST that your doctor, during your annual physical, order a pelvic ultrasound to visualize the ovaries. If your doctor refuses, find a new doctor. There is also blood work that can be done, called a CA125. This is the ovarian cancer tumor marker in the blood. However, this blood work is very deceptive, and cannot be relied upon alone. My CA125 was elevated, but only to the point where the doctor would have assumed that I had scarring around my ovary , NOT cancer. Based on that blood work alone, I would still not know I had ovarian cancer, and my condition would have continued unchecked. Also, if you have a first degree relative (sister, mother, aunt, etc.) with ANY kind of cancer, you absolutely must be checked - preferably every 6 months. Each of my sisters and my daughter will now have to be tested every 6 months for this horrific disease. My sisters are beyond child bearing years, and are being very encouraged to have hysterectomies in order to save their lives. Do not trust your health to anyone but YOU. Be proactive! Protect yourselves.
