Ovarian Cancer Videos - Karen T



Watch as Karen T takes us through her journey with ovarian cancer.

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Video Transcription

Dealing with anxiety

Fortunately, cancer did not cause me to suffer from anxiety and sleeplessness. I may have had one or two nights that I had difficult time sleeping and I read in a cancer book, one of my books, that if you drink warm milk and put nutmeg in it it will help you go to sleep. And so I tried it and it worked. And fortunately, I only did that a couple of times.

Change in appetite

I experienced a loss of appetite during my first round of chemo treatments. With the IV treatment I experienced a little bit, but when I started the IP treatments I really had a difficult time with my stomach. Fortunately, there were medications that helped, but I lost about 50 pounds and could stand to lose that weight. So that was okay. I found that I lived for quite a long time on chicken noodle soup, Boost, crackers, and popsicles. My oncologist that I was working with at the time recommended I drink at least two liters of water a day. And I did that and drank as much water as I possibly could. But I just really found I had no appetite. With this next round of chemo that I’ve been going through I found that I do have an appetite, and my body’s reaction to it has been much milder.

Coping with change

My suggestions for coping with change related to cancer are - count each day as a blessing. Cancer does change your life, and we have to look at it that it does change our lives many times for the good. I know days are difficult and they’re hard to struggle with but some of the things I’ve learned that I’ve had to change is to accept help if it’s needed. I was always Miss Independent and didn’t need help. And now I realize that there are many, many people around. There are lots of angels around who are more than willing to help and help in any way they can. And that’s one of the things that I’ve learned to accept. One of the things I do now to is take a person with me when I go to appointments. My husband’s gone. My daughter’s gone. And they take notes because I know when I get in to see my gynecological oncologist my head is just spinning.

Diagnosis

My primary diagnosis in September of 2011 was stage 3C ovarian cancer. That meant that the cancer was in my abdomen, my lymph nodes and my deposits were larger than two centimeters.

Gifts for cancer patients

A great gift for cancer are numerous and often depend on the person that it’s going to. For me, cards and notes were wonderful gifts. The elementary school where I worked and many of my co-workers sent me tubs of get well cards. And it was wonderful reading through, looking at the pictures, reading the notes, and feeling that support and encouragement I received from so many people. Great gifts were books. I found that often I also did crossword puzzle books and word search books. Sometimes I couldn’t concentrate long enough on a book. And so doing just those kinds of puzzles helped. Another great gift is just taking time to listen. Sometimes we want help and solutions and sometimes we just want someone to listen. And so having that support. I have wonderful family members who call very frequently and we talk and just having that support provides the strength. One of my families of grandchildren recorded a book, and that recorded book was something I could listen to over and over again and hear their voices. And that was, again, great comfort. And then I recorded a book for them as well. And hearing my granddaughter saying she wanted to develop a cancer raider that would get rid of all of the cancer just provided a great sense of encouragement. Offer people prayers. Prayers are another great gift. I found that I had many people praying for me. And that was a great deal of support and - what a gift. We had people who dropped off meals at our home. And there were times that I didn’t feel like eating, but my husband was greatly appreciative of those home cooked meals. We also have people that gave us gift cards to restaurants. And on those days that I couldn’t prepare a meal or my husband didn’t want to prepare the meal we were able to use those gift cards and still have food in our home.

Life before cancer

Before I experienced my first ovarian cancer symptoms I was working many hours a day as an elementary principal working off and on weekends and the evenings. But I loved the job. I loved the challenge, the children I was fortunate enough to work with, my co-workers, and just the people I came in contact with. We were in the midst of planning our youngest daughter’s wedding. I was traveling with my husband whenever I could. We were spending as much time with our family as possible. Our immediate family, the closest family member is about six hours away. So spending time with them was often a joy to us. We were also looking at my retirement in a few years.

Metastases

My stage 3 ovarian cancer is metastatic now, and it has caused tumors in my liver and I just found out I have a tumor in my lung as well.

Place of care

I was fortunate in that I received some of my care at the Columbus Regional Hospital here in Columbus, but most of it was at St. Francis Health. I was in the old Beach Grove location. And then most recently I’ve been working with the new cancer center. I can’t say enough nice things about both facilities that were wonderful to work with. And I can’t tell you how kind and caring and compassionate I think cancer nurses are. The oncology nurses are wonderful. They will do anything to go out of their way to help you. I just finished a clinical trial, and the study coordinator there was absolutely wonderful to work with. My gynecological oncologist has just been superb. And his office staff is outstanding. He has a nurse practitioner that, again, is just wonderful to work with. And his office staff have always been kind and compassionate. And he has a nurse that works in his office that’s just been, again, a blessing to work with. When I found out I had the reoccurrence, I called in a panic and her first words were, “Oh, that happens. We’ll get you into see the doctor right away. And we need to see copies of your CT scan.” And she just put my mind at ease immediately, and I can’t thank her enough for doing that because I think our first reaction is to panic. But when we had those kind and reassuring words it just helps us then begin to cope with the next changes that are coming about in our lives.

Quotes

My favorite cancer quotes have kind of varied as I’ve gone through this journey. There are thoughts and slogans that come to mind. And I think sometimes it depends on the individual person and the frame of mind that you might be in at that time. But a friend gave me a hat when I first started and on it it said “One Tough Chick.” So we’ve laughed about that a lot and said that I am a tough chick. I’ve always been very independent. So that kind of described me. Another phrase, one of our daughters gave me a mug and it says, “The chemo made me do it.” And, you know, as you go through the different chemo drugs and the chemo therapy you do experience or I have experienced chemo fog. Some days I’m not organized. Some days I start something and end up doing something else and totally forget that I started that. So I’ve learned to make lists and try to finish everything I started. So being in the chemo fog, the mug fit perfectly because I can blame it on the chemo now. Another phrase I’ve used, and I’ve talked about this a lot with other people, is ‘You have to go through this to get to the other side’. I have to be ready to fight this and fight it aggressively in order to get well, and that’s certainly been a goal. Some days I just say, ‘It is what it is, deal with it’. You know, there were days when I went through the IP treatment. Some days my goal was to get up and just take a shower. And I knew those days were going to be rough. At times I’ve taken Neulasta shots and the Neulasta shots kind of wear me out. I’ve taken notes during those days just so I can look back and say oh yeah, I did have a headache when I took that the last time and I know I’ll get through it. So it is what it is, deal with it. Another thing I’ve tried to keep in mind is cancer can’t take away your dignity. You know, that’s something you can always maintain. And the biggest one for me has been trusting the Lord with all of my heart. And when I did my first chemo, my husband held my hand, and I imagined that God was holding my other hand and getting me through it. And I think there are instances where we just have to trust in God that He has us in the palm of His hand, and just trust in Him with all of our hearts, and that’s what I tried to do.

Side effects

My treatment side effects with the first round of chemo - I started losing my hair, and I lost it right around here. It was very strange. I lost it on top and kept it right around here. And I tried to hold on to my hair as long as I could. And one day someone asked me if my younger sister was my daughter and I thought, ‘okay it’s time to do something with my hair’. So I had what was left of my hair, and I had my hair shaved. But I had gotten a wonderful wig. There’s a lady in Greenwood who has a wig shop and she was able to match my hair, my original hair that I started with, to the wig. We didn’t know if I was going to have hair during our daughter’s wedding. And so we got the wig prior to that. And she did a wonderful job in matching that. So I had a great wig. And then my hair has since grown back and it grew back curly. It’s never been curly before, and it grew back curly, and it still had the grey which I was hoping it wouldn’t have, but the grey did come back along with it.

I did lose my appetite for quite a lengthy amount of time. I had low magnesium and potassium, and I had multiple infusions and took tablets, the pills, to try to bring that back up. My blood counts were often very low, and at one point they were critical. I had blood transfusions on several occasions. I had long hospital stays with the IP treatment. One I was in for eight days, went home for a week, and went back for eight days. So they were pretty lengthy but I had a wonderful oncologist I was working with who kept a close eye on me and my progress. I suffered from tiredness and fatigue and I still struggle with that even to this day. And my stamina was not as good as I felt it should be. I had my surgery in September and then went through my treatments. I finished my last treatment; it was an IV treatment in January again with the Carboplatin and the Taxol. I was able to go back to work at the end of March and finish out the school year, and I was very thankful to be able to do that. But when I went back to work I found that I didn’t have the stamina to do the job the way I felt it needed to be done. And I know that I would not be happy nor would anyone around me if I was not able to do the manner and the job that I felt it needed to be done. So I retired early, earlier than I had originally planned on retiring.

State of condition

I consider my stage 3 cancer to be in reoccurrence at this time. I had a recurrence in July 2012 this year. And in May I had an exam and everything was okay. And then in July we discovered that I had a lump in my liver, a lesion in my liver. And then just in the last couple of days, we’ve discovered I have a lesion in my lung as well. So it definitely is a reoccurrence. In July I was determined to have platinum resistant ovarian cancer. And I’ve currently been in a clinical trial where I’ve been taking Doxil and EC145, but, of course, you don’t know if you received the EC145 or if it was a placebo being in the trial drug. But I am no longer in that study and hope to be able to find another one. You know, when you look at clinical trials it’s a tough decision but I, as an educator, have always felt finding new and different ways certainly benefits future generations. I have found it very helpful to me. I’ve always prayed that God would find other ways to use me and being in a clinical trial is one of those ways. I’m an information donor. And I feel that I’m providing information for future generations for my children as well as my grandchildren. I consider it an honor to be able to participate in the one I just participated in. And I’m hoping to find another one. We’ll be meeting in a couple of weeks to talk about next steps and hopefully they’ll be another clinical trial that I’ll be able to participate in because, again, being an information donor not only helps me but future generations as well.

Symptoms

The signs I had of ovarian cancer were pretty classic signs. I had the bloating, the weight gain, frequent urinary tract infections. I had to urinate frequently. I would eat very little and feel like I was extremely full. You could hear my stomach grumbling. You could put your hand on it and just feel the grumbles going on in my stomach. I had gotten to the point that I couldn’t sleep on my side or my stomach anymore. And school was starting, and I knew I just didn’t have the energy that I usually had. I didn’t have the pep and the vigor that was very typical of me at the beginning of the school year. So I went to our family doctor and said something is wrong. I just don’t feel right. Do you think it could be my gallbladder? And I’d been to the doctor that summer with various things, and when I came back again, he knew that something really wasn’t right. And so he did an ultrasound on my gallbladder and called me and said, “Your gallbladder is fine but I still want to do a CT scan.” So we did a CT scan the next day and that’s when we discovered that I had the cancer. He referred me to my local gynecologist who referred to an oncologist locally and then on to a gynecological oncologist.

Treatment decisions

In September of 2011 when I received my diagnosis, I met with my gynecological oncologist. And he talked about several options that we had. The option we decided was to go ahead and do the surgery, the debulking surgery and then save the chemo for afterwards. So that was our plan. He did the debulking surgery and it was scheduled for three hours and ended up being about five-and-a-half hours that included a bowel resection. He removed as much of the cancer as he could. It was on the outside of my bladder, my kidneys. He removed some lymph nodes. He did a complete hysterectomy. The cancer was on the outside of my liver, and he took out part of the omentum. It was a pretty lengthy surgery. When the surgery was completed he told me that he thought he had gotten 95 percent of the cancer. And so I was relieved about that. When I was ready then after I recovered from the surgery, I then started chemotherapy. I did two rounds of the IV chemo with Carboplatin and Taxol. And that was done at the local hospital here. Then later I went up to Saint Francis Health at the old Beach Grove campus and worked with an oncologist there who was absolutely wonderful. And she did the IP treatments. And the IP treatments are where they actually put the Cisplatin and Taxol into my abdomen. I had two ports in place at one time. I have a port in my chest that’s still there, and I want to say thank goodness for the person who invented those because it’s just been a blessing to use that port in all of the labs and transfusions and the different things that have gone on. I also had a port in my abdomen. It started at the end of the my rib cage and had a tube going into my abdomen so that when I did the IP treatments the drugs went directly into my abdomen, that when the IP treatments were finished, that port was removed.

WhatNext

WhatNext is a patient site that offers ovarian cancer help for families and for caregivers and for other ovarian cancer families as well. I found that I can go on the site, and I love to read about other people’s journeys. I know that my struggles might be difficult but I know there are other people as well who give me a great deal of hope and inspiration in reading and sharing their journeys. I’ve always hoped that after I retired, God would use me in different ways to impact people. And so hopefully it’s sharing my journey and experience with ovarian cancer that will help and serve that purpose that I know God has for all of us.

Patient Doctor Relationship

To build a good working relationship with your oncologist is key. I recommend asking many questions, being knowledgeable about what’s going on, following their advice. You know, I look at them as experts. We have many people who offer us advice. You know, there’s so much on the Internet you can read right now and there’s so many recommendations. But I look at the oncologist and especially my gynecological oncologist as the experts. They’ve spent a lot of time studying this. They’ve worked with many patients. And so I think having a trust in them too is key because if you don’t trust the people you’re working with it’s very hard to work with them. So finding someone that you can trust, that you can count on. And, you know, I found there are no dumb questions. So I always ask questions, and I feel that helps establish the trust as well. So it’s very important to have that trust.