Ovarian Cancer Videos - Carol N



Ovarian Cancer Survivor CarolN

Watch as Carol N takes us through her journey with ovarian cancer.

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Video Transcription

Dealing with Anxiety

I didn’t experience sleeplessness. The first night after being told I was sound asleep and woke up to the most painful experience of my diagnosis and treatment. My husband had to sleep in a recliner in the living room as he had previous to my diagnosis had a rotator cuff repair done on his arm. And so he was sleeping in the living room. I was in the bedroom and I woke up to the sounds of him sobbing. And I pulled myself up in bed and I started to get up to run and tell him everything is going to be all right. And then I stopped. I couldn’t tell him that. And I didn’t go out. I wish I had, but I didn’t. I just rolled over and covered my ears. That was one of the most painful. My doctor put me on an antidepressant immediately after the surgery. Lexapro works wonders. I would sit up in the morning to get ready and my day and I would be singing. I used to do that as a kid. I’d wake up and I’d be singing silly songs, happy songs. I didn’t experience that. I slept constantly and was concerned about it and my oncologist told me, “Carol, we’re pouring poison into your body. Your body is fighting the poison and the cancer and it’s really fighting so it’s tired. Sleep.” So I did.

Change in Appetite

I was trying to think of in the beginning, right, when he said it was cancer and everything I said, oh, okay, I’ll have chemo. Good thing is, I may lose my hair but I’ll also lose a ton of weight. My doctor looked at me and said, “Oh, no you won’t. You will not lose one pound.” And he was right. He kept me on meds, steroids, whatever, and I gained two pounds. Now, they took a 39-pound tumor out of me so I think I gained that back and then two pounds. So that one didn’t work on my. My appetite did leave the first, oh I’d say month, maybe two months of chemo but Tom makes the best French toast and that was all I could eat for a couple of weeks. And then I graduated to needing, wanting Campbell’s chicken noodle soup with ten crackers crumpled in it. That was so good. And then it was probably six, seven weeks, I ate everything as if nothing was wrong, like I didn’t have a problem.

Coping with Change

I don’t know that I have any particular tips. Change is hard for all of us and change means the end of something. When you turn around and look out the new window there’s so much beauty out there. The past is something to be treasured and remembered but there’s a lot in my past that I don’t like remembering. I was married to someone and it was just not right. And my priest said, “No one should live like this, Carol.” And the divorce was painful. Why would I want to remember that? And then I met Tom and I can’t tell you. We’ve been married 30 years now and he’s wonderful. Change can be good. Look for the good. It’s out there. There’s so much wonderful out there.

Diagnosis

I felt healthy. I had back pain. I’d had back pain for years. I had watched Gilda Radner on TV when she did a promo for awareness of ovarian cancer and she had said her symptoms and the symptoms were upset stomach, gas, bloating, back pain. And I remember it was years before I remember thinking, my God, if I get cancer it’ll probably be that one and I’ll never know it until it’s way too late. I was right.

Financial and Out of Pocket Costs

Economically, cancer didn’t hit me too hard. I was on Medicare disability which put my surgeries and things taken care of. But my husband was working and he has very, very good insurance. The first year I know I was over $100,000 that year, well over. But my insurance thank God, with a reasonable deductible, we did it. And have all of the years since, the seven years since. I just had the PET scan, those are $5,000. His insurance paid 80 percent and Medicare picked up the rest. If you don’t have the money I would contact every state, federal, local, any sort of help that you can get. And I just pray that this Obamacare that we’re going to be having doesn’t screw that up. I love that it has no pre-existing conditions. I still can’t get life insurance because I have to be alive ten years. So I’ve got three-and-a-half to go. But then I can insure myself at whatever a 72-year-old lady has to pay for life insurance.

Fear of Cancer

What would I say to someone who has a fear of cancer? That would be a lot of the words I said to myself. I not only feared cancer, I feared the specific one I got. I feared ovarian cancer. They said stage four ovarian cancer, I said, oh boy, clasp your hands, lay down, you’re dead. And God said, not so fast. There is nothing in life that you fear that God will not carry you through, hold you tight, lead you to where he wants you to be. Nothing. I found that out so many times in my life. My first fear was an injury to my son. I stood over my son in an emergency room. He could not move anything. He would look at me and say, I’m fine. He had played football. It had been a rough tackle. He was down. He was paralyzed down from the neck down. Nothing moved, nothing worked. And this little nurse just looked at me and said, “You must leave now.” And I told her, I’m his mother. I’m staying with him. And she was a little thing. And she pulled herself up to about 6’4” and said, “I am his nurse and I am telling you go to the waiting room. We have work to do.” As I pivoted to leave I thought oh, Lord, please you know how much I love him. Take care of him. And long story short, we all walked out of that emergency room that night. It had been the spinal column had separated. The cord had come through, and it smacked back down, numbing the cord. But he walked out. God will help us all walk out.

Gifts for Cancer Patients

Appropriate gifts for people with cancer? Give them something. Someone gave me a really cool hat so that my head wouldn’t be cold when I was sleeping. That was really great, but I felt kind of silly in it so I didn’t wear it. And besides Tom likes to rub my crew cut. I would say for me, gifts that you would give to someone at any time are appropriate gifts, if you know they’ll like it and appreciate it.

Life Before Cancer

I went to work every day. Worked as a senior financial administrator for a major computer corporation here in Minnesota. I had married my second husband and gained five children in addition to my three children. So we had the proverbial eight is enough family. And it was, eight was more than enough. And we had dreams of forever. We had waited, each of us, for a long time to find the other. And our children were as glad if not happier because we had found each other. Life was good. I had a bad back but life was good.

Cancer Limitations

What are the things that I love to do and haven’t been able to do because of ovarian cancer? Nothing. For two years I put my life on hold. I told my oncologist I was going to fight and fight I did. It was scheduled and I kept the schedule. I didn’t go on a trip. I didn’t take time off. I didn’t say no, I want to feel better, so I want a little time off. I just kept fighting. And it was almost two years. And then being me, when that PET scan came back cancer free I had my knees replaced. Now, my oncologist said, “Carol, not many people do this.” And I said, but you don’t understand, I’m going to live. I’m going to dance. I’m going to walk. I’m going to go shopping with my husband. I’m going to walk the beach. I’m going to do what my knees have kept me from doing. That’s the only thing I had to wait with that because while on chemo you can’t have major surgery, really.

Lowest Point

What saw me through the toughest of times? My husband. He would look at me and I was on steroids and I was puffy and I had no hair and sometimes I didn’t feel like a person, like who I was. I felt like I had to be someone different because I looked so dissimilar to what I perceive myself as looking at which is 23 and thin. So it’s a problem all of the time. But he would look at me and he’d tell me I was beautiful. And I’d say how can you say that? And he said, “I love you. I’m looking at you through my eyes.” And I accepted that from him. I mean he’s God’s greatest gift to me besides my three sons, and my step kids, and my grandchildren, and my great grandchildren. God saw me through. God led me through. He took my hand. A year or two ago they wanted to do a biopsy, something looked strange. And I felt that panic on whoop. And I reached my hand and like I don’t know what to grab his I suppose and he said to me, “I’m still here.” And he was. And it was totally nothing that they biopsied. They even apologized and said we’re sorry we scared you.

Metastases

I had a 39-pound tumor which had been my right ovary. My left ovary was healthy, oh yay. I had a metastatic growth on my intestines and on my urethra. My oncologist that my doctor sent me to was a fabulous man. It’s a new specialty that back in ’06 had just started practicing. It is a gynecologic oncologist surgeon. Absolutely the best person that I could be with. He did the surgery, but before doing it they check your intestines for internal cancer. There’s this long thing and it’s not comfortable, but it’s not terrible. And he had my heart checked. So when he was doing the surgery he knew where it was and where it wasn’t, so to speak. I read the report, he sectioned and removed all of the material he could see on the intestine and on the urethra scraping very carefully. They removed I’d like to say the Pacific Ocean but probably not that much fluid, quite a bit of fluid from my abdomen. It was a lengthy surgery. At some point they stopped and the surgeon went out and told my husband and one of my sons who was there, what it was and what they wanted to do. My son that was there had come in from Milwaukee where he works and he has a good amount of medical knowledge in that he works at Medtronic and goes into surgeries for implementation of heart pacemakers, pain relievers, equipment that’s placed inside you to keep a better life going. They explained they wanted to put in a port so that they could redo and get chemo directly into my abdomen and then I could dance or shimmy or whatever I wanted, but to get the chemo spread throughout my abdomen. They okayed and I have a cat about to jump up. See, I told you I did. Okay. Have fun with that edit. It was something they wanted to do. It’s an incision up here. And they put it on my rib, and I was the first one at the clinic to have this procedure done. It had been okayed for use on January 6. I am an Internet freak. I look at everything. The one thing that terrified me was that it said most people stopped using this procedure because of its pain. I never had pain.

Perspective on Life

I always knew life was precious. I had lost three babies. They aren’t fetuses. They were my children at about three months in pregnancy. I had my oldest son and I knew how precious he was. And when I held my son Jim, my second son, it was the greatest most precious thing in my life. And then 15 months later I held Mike. The doctors were afraid to tell me I was pregnant again. I was thrilled. I joked and I said oh my goodness, this will be my girl. And my son stomped his feet and said I’m not a brother. I have a brother. I wanted a sister. I told him to have a girl. His first child was my beautiful granddaughter. Life has always been precious to me. My Tom has made it more precious. Life is a gift. I want to live every day.

Place of Care

I received care at Minnesota oncology and hematology in Minneapolis, Minnesota. I would adopt the oncologist in a minute. He reminds me so much of my sons. Seven years now I’ve been seeing the people there and everything. After the 12 months, my fingers are still kind of numb. My feet are really numb. I have to be real careful. It’s Minnesota, it’s winter. I wear warm boots. My husband warms up the car, but I wear stylish boots because I’m seventy but I’m not old. I ordered a walking cane, and because my balance has been affected. So I got this really cool one that has, it’s got like an eagle made out of brass, it’s the handle and it comes down. It’s got little brass thingies going down because I didn’t want to use a cane. I used a walking stick. And what it does, actually, it’s just my balance if I start to tip I can right myself. My hair, sadly, never grew back after this second year. My husband says he thought it was thinning a little before but I told him no. But, I mean I love it. It’s a wig. I always look good. If somebody calls and wants us to go out, I can go out. I mean I’ve popped my wig on and we’re on our way. And it’s little too pay for being cancer free. Three weeks ago for the first time in three years I had another PET CT scan. I was a little nervous, and though I heard the Lord whisper in my mind, I’m still here. And He was still there. And it came back seven years cancer free. And God is good. And He gave me patience. And He gave me an attitude of looking forward, not back. I realized I had never stopped to stop planning. I saw myself well. I kept walking towards it. And that was one thing my oncologist told me was that my attitude was 90 percent of my cure. I’ll take credit. I really think it was him and God. But it was amazing.

Questions for Doctor

Questions that you want to know, you ask your doctor. You can come online on WhatNext and we can help. We can give you support. We can encourage you. We can laugh with you. We can cry with you. And we can give you the biggest cyber hugs. But if we think you should ask your doctor, we’ll tell you then.

Quotes

“I Am Woman” was the song I would scream literally. “I am woman, hear me roar, in numbers too big to ignore.” We can do this. We can do this. You can do this. I have many cancer quotes that are meaningful to me. “There’s a verse of what cancer cannot do, every line in that is true. It cannot stop you loving someone. It cannot stop them loving you. It does not change you.” People that I have shared a poem with that I wrote have told me that it inspires them. And basically it says, I know that I’m not in control but thank God that He is. I know that I’ve no need to plan for the best plan is His. I know that as in footsteps there’s only one set in the sand. And I know that I am clinging tightly to His hand. And I won’t say that I don’t have chemo brain because it’s a six stanza poem and I just gave you two of them. But many of my friends have said that that has helped them through other things.

Side Effects

Well, let me give you, and I’m not a Pollyanna but I’m a people person, I love to talk to people. I love to be with people. I met on my chemo journey the most wonderful, wonderful people. Minneapolis Clinic had a staff that is unbelievable to have gathered in one site. They have jokesters laughing, pulling jokes, I like jokes. It’s fun. I can remember Vicky, the first day of chemo I was terrified. She came out and she cracked a joke and then she cracked another joke. And then we found out we both had cats and we were friends for life. And day one of the infusion was into my arm, hand was where they put it. I didn’t want a port up here. I didn’t want something sticking out of my body. The port down here was fine. It was underneath on my skin but they did the whole thing with just using the veins in my hands and arms. They stuck it in, and I thought oh, gee, now let’s see when am I going to start to get sick? When will my hair fall out? But they had that all ready, all set for me. They said go buy a wig, cut your hair short. My hair was short. They said keep a sample of it so you know what color. I knew it was Lady Clairol light ash blonde. So there’s my color. They gave you makeup tips. They gave you all sorts of ideas of how to deal with it. And so there I sat in my little recliner and I was doing it. I was getting chemo. And I didn’t feel sick and I felt wonderful. I mean this is easy. Well, right. What I hadn’t thought about is chemo is a progressive. It adds on. The results, you know, your first day it starts to kill a little and then the next time it kills a little bit more and it gets stronger and stronger. And the chemo gets stronger and stronger the more and more you receive. So it was a pleasant experience, sitting, talking. My husband was there. And we met people that were wonderful people, really wonderful people. I have friends from church that strangely enough two women and I had the same diagnosis about the same magnitude. And we chatted online and on the phone and in church. I was scared of losing my hair because I’m vain. I like to look nice. My hair started falling out by the end of the week and I would joke, I would run my fingers through it and then go like this and I had all ready in my mind decided that I wasn’t going to do that. I was going to take my son’s hair clippers and remove my hair. I did that. Tom and I one night, it was into the second week, and my son was out of town. I looked at Tom and I said look at this and I just went like this. And there’s a pile of light blonde hair was falling on the floor. And he said, “Are you ready?” And I said, yeah. And he goes, “I don’t know what you want to do.” And I said well I’ll show you. So we paraded into the bathroom. I put a towel around myself. And we’re looking in the mirror and Tom took the clippers and went, “Hmph, hmph.” And I said, hold on honey, just let me have them for a minute. Let me just show you. And I put it against my head and I went all the way back. And there was this strip of bald. And he said, “Okay, I see. I can do that.” And I said, of course you can. And so he did. And it was almost funny. I noticed that if I hadn’t had tears rolling out of my eyes that it would have been funny because both of us we were joking and both of us are crying. We got it done. I took a shower, I came out. And Tom looked at me and he says, “You look like Dave.” Dave’s my brother. And we’re a year apart and people used to say we looked a lot alike. And I got offended. I said, I don’t look like Dave. And I went in and I looked in the mirror and I went oh my God, I look like Dave. And when I told my brother this, he laughed and said what’s wrong with that? And I hope this isn’t offensive to any of you, but I said to my brother, Dave picture it you with boobs. And he started to laugh. And he says, “Oh, that’s not a pretty sight.” And that was the way we dealt with it. It was over. I was bald. I had not lost my eyebrows or my eyelashes or anything or hair on my arm. But that was the visible and told the world that I had cancer. I wore baseball hats. I wore my wig. I wore my wig all of the time. I guess I didn’t want to see me without hair. But I can remember when it would start to itch and I would sit in the chair and Tom would say, “You’re beautiful.” I’d say, “Tom, I’m sitting here all swollen up and bald and you’re saying, what?” And he told me I was beautiful. I love him. I experienced pain in my fingernails and they told me to keep them short. And that they might fall out. Okay. Then my feet started getting numb and they said, yeah, that can happen. It’s neuropathy and that might not go away. Okay. I’m getting better. I’m stronger. I would walk around the house singing “I am woman, hear me roar.” I was. I finished with those six cycles. I went back to the doctor. And he said it was just great. The PET scan showed that I was cancer free. And had I not had a bad back I might have done backflips, but I did have a bad back. He says, “Carol, there’s something I want you to do.” Now, my hair was about that long, again, all over. I had a really cool flat top. We used to call them butch haircuts when my brothers were little. But he said, Carol, “I want you to take 12 more months of chemo. Results from the tests that we’re going on to check this application were critical.” He said, “They stopped it. It was so black and white. Those who just stopped after what I had just completed versus those that went on for the 12 months, they didn’t even make the 12 months. The cancer reoccurrence rate in those who didn’t go on was so much more than in those that went on that they stopped it and put that into effect and immediately okayed it for use.” I said, okay, fine. I actually asked him, if I were your mother would you want me to do this? And he said, “Carol, if you were my mother, I would make you do this.” That worked. I came home and on the way home we just kind of looked at each other because we thought we finished it. And then we went out and we bought that night a red wig. I wanted a red wig. I actually wore it twice too. And then I gave it to a young woman who didn’t have a lot of money and was going without telling everyone that could hear that she was not ashamed of being bald because she was fighting cancer. And I brought it in and the clerk said she took it the next visit. So it was cool. I didn’t waste the money.

Conditions and Treatments

My current state would be complete remission, cancer free. I choose to call myself a survivor. If it wants to come back and try for me again I am so confident that Dr. Bente and I and his staff will fight it again, and I will get to see more of my life.

Symptoms

I was diagnosed with stage four ovarian cancer on January 27, 2006. I have that date in my head forever. I had scheduled back surgery with a really wonderful back surgeon who called me after I had had the MRI he had requested and said he needed another one. He wanted one that had contrast. So we went back within a day and got the one done with the contrast done and that was cool because I didn’t have to lay all confined and everything. It was one of these that you stood in, and claustrophobic people it is great. The next day I got a phone call from my regular doctor and she told me that my back surgeon had seen something that he didn’t understand and he wanted to have further tests run so that he would have that knowledge when he went in to do the surgery. She told she’d like to get it all done that week because she was going to have a hysterectomy on Friday. So we proceeded in a rush mode to get that done. We went into the hospital, the local hospital here in Waconia and we had CT scan done. The CT scan was, I don’t know. They injected a dye and said you’re going to feel like you have to throw up; don’t. So I didn’t. And it went away fast. And came back and then they wanted to do an ultrasound, and we did the ultrasound. After she had completed all of the ultrasound she stood up and said that she was going to go check what the pictures looked like and not to get dressed until she came back. I lay there alone in this small room where they did the ultrasound and it hit me like a rock that this was ovarian cancer and I had it. I had to have it. it explained so much. Everything just fell into place. I’m laying there and this fear builds in me and I reach for who I always reach for. I reach for God. I go to God, Oh Lord help me. And suddenly my mind was totally clear. And the fear was gone. And I could think. And my thinking process was okay. I’m going to die. I want to do this right. And I said, Lord, please, will you guide me? Will you take my hand and guide me to where you want me to be? A man came in after that. He was the head of radiology at Waconia Hospital. And he said, “Carol, I’ve looked at these photos and I’ve looked at your CT scans, and I’ve called your doctor, and I’ve told her what I see. And she was wondering if you’re not too busy could you manage to stop over at her office, which was only a block or two away, and have a talk with her, and discuss this with her?” And I said, of course, I will, no problem. And he smiled at me like you don’t know. And I smiled at him like you don’t think I know. And I said, thank you and we left. We got in the car and I told my husband, Tom I have ovarian cancer. I could have hit him with a baseball bat, but that didn’t seem appropriate since he was driving. I just said it because I tell him everything. And he reached out and grabbed my hand and said, “Don’t be ridiculous.” We got to the doctor’s office. They showed us in right away. This is unheard of. We sat there and I took Tom’s hand and my doctor came in and she was crying. She had a thick, thick pile of folders. I’ve been going there 25 years, so yeah, it was thick. And she’s crying and she sat down and she looked at me and says, “You know.” And I said, of course I know. And my Tom is sitting next to me going, “Know what? What do we know? What do we know?” And I said to him, Tom I have ovarian cancer. And my doctor’s crying and she’s looking and she goes, “I gave you internals. I gave you these tests. I checked everything. I did.” And she had. And all I could say to her was I got it. It’s here. We know now.

Treatment Decisions

My husband and son decided, they said she’s going to go for it. And I had told the oncologist when he was scheduling the surgery, I said, you know, if this is cancer and if it’s bad, which I fear it may be, I want to fight. I said I’m 62. I look like a 62 year old lady. I’m a grandmother to 16 beautiful grandchildren. But trust me, I want to live and I want to fight. And he had looked me in the eye and he said, “You want to fight Carol, we’ll fight.” And we did. We did that. We did the procedure where they put the inter peritoneal port in. And I did it six cycles of 28 days. They said it could be painful but they had medication and they would work with me. Hey, I’m cool. I can take pain. I want to live. And so the decision was made that I would do these six infusions of a very strong, strong chemo.

WhatNext

What Next for me? It’s a benefit. I had due to know WhatNext being out there been forced to, and it wasn’t really forced because my doctor’s clinics supplied so much support. My friends, my loved ones, this is an extra bonus. And I looked at it, and I thought God put me here to help others, to let them know what they’re feeling is what others feel and how I coped with it, what I did, what worked with me, what didn’t. My good old vitamin B12 pills just really help with neuropathy in your feet. It was something that I could share with more people than when God sat me down next to a woman at my niece’s wedding and said, “You survived cancer. My daughter was just diagnosed with ovarian cancer.” And I got to tell her that I was stage four and I’m still here. It’s those kind of things that I want to be able to do for someone on WhatNext.

WhatNext Part Two

I have to say something about WhatNext, it’s wonderful. The people that work on it that, run it, that keep it going, that move it on, and are really dedicated, these people are God’s gift to all of us that have had cancer. And they knew what to do because they’re one of us. I hope everyone that sees this can jump in and say welcome to our site because what next? Who didn’t say that during the crazy, hectic horrible beginning days? What next?

Patient Doctor Relationship

This question ten is funny, how do you get along with your oncologist? Do you have a good working relationship? I’ve said it all ready, I would adopt him if he were without a parent. I would gladly be his mommy. Just a really wonderful, appropriate for the moment, type person that I will always see him say, “If you were my mother I would make you do this.” I will always be able to recall totally, “Carol, you want to fight?” And he took my shoulder and he said, “We’ll fight.” And we did.