DESCRIPTION
Kay Kays of Sun City, Arizona survived four diagnoses of pancreatic cancer between 1994 and 2008. Her specific diagnosis was pancreatic cyst mucinous adenocarcinoma, a rare form of pancreatic cancer. There was no chemotherapy specifically for pancreatic cancer, but did qualify for a Whipple procedure, a reconstruction of the digestive system, following her first diagnosis. Her final diagnosis was preceded by a spot on her right lung and the surgical removal of the lung. Incredibly, Kay can still engage in hiking, she can deal with being the high altitudes that come with being an air passenger, and she finds time to help others diagnosed with pancreatic cancer.
In 1994, Kay, an avid hiker and tennis player, suddenly found herself feeling extremely tired. She ended up in a hospital’s emergency department. That’s where a mass on her pancreas was detected, and she was diagnosed with pancreatic cancer.
Kay went in for a Whipple procedure. It involved an incision made across her chest and stomach. After the procedure, Kay said she had to carry about a dishpan for about two weeks because she could not keep any food down, but a few weeks after that, her digestive system returned to normal. Her life came close to returning to normal, as well.
That changed in 1999. A CT scan was run and revealed the cancer had returned to her pancreas. This time Kay underwent a pancreatectomy, in which her pancreas and spleen were removed. Because of the operation, she became a brittle diabetic. In the beginning, she had to get five shots a day. Kay had to change her diet, cutting out greasy foods and sugar. She also had to take digestive enzymes.
Only three months later, Kay Kays was again diagnosed with pancreatic cancer. Another CT scan revealed a lymph node. It took approximately a year before she could undergo surgery to remove the lymph node. During that time she was put on a chemotherapy regimen with a cocktail of zofran and gemcitibine. Kay said the side effects of the gemcitibine were hair loss and fatigue.
Kay got past this surgery and the chemotherapy, and when she thought the worst of her cancer journey was in the past, she was diagnosed with pancreatic cancer one more time in 2008. Pancreatic cancer often spreads to the lung, liver and lymph nodes, and this diagnosis was tied to a spot on her lung. Kay had to fight to undergo a biopsy, but eventually had one done and it confirmed that she once again had pancreatic cancer. She elected to have her right lung surgically removed.
The good news for Kay Kays is that since 2008, cancer has not returned. By way of advice, Kay urges those diagnosed with cancer to never lose hope.
Additional Resources:
Support Group:
Pancreatic Cancer Action Network: https://www.pancan.org
TRANSCRIPTION
Bruce Morton: For more reasons than one, pancreatic cancer is among the most difficult to treat…and beat. However, our guest was diagnosed with the disease in 1994, and she is still going strong. This is the Cancer Interviews podcast, and I’m your host, Bruce Morton. Our guest is Kay Kays of Sun City, Arizona, and her strength comes not only from her survivorship, but her message of advocacy for others. Now it’s time to hear her story, and Kay, welcome to Cancer Interviews.
Kay Kays: Thank you very much for having me, Bruce.
BM: All of our guests have had some involvement with cancer, and all of guests have parts of their lives that have nothing to do with cancer. Kay, we would like to learn more about that non-cancer part of your life. So, if you would, tell us about where you are from, what you have done for work, and when it’s time for fun, what you do for fun.
KK: I am originally from Altoona, Pennsylvania. I love to bowl. I am not a golfer, even though I live in Sun City. I love to play mah johng, and I love to be with my family and my grandchildren.
BM: Let’s talk about your cancer journey. For all of us who have survived cancer, there was that point in time in which we noticed something with our health was abnormal. For you, when and how did that take place?
KK: In 1994, I wasn’t feeling right. I felt like I was always in tune with my body. I was an avid hiker. I liked to play tennis. I loved my work, but I started to lose weight. I thought my diet was working. I was extremely tired and thought I was just being lazy. I took those into consideration and decided to see my PCP to have some tests run. I never heard about the test results, so I figured no news was good news. Those tests were done in October and in April, I had gone to a party, where there was alcohol. I later learned alcohol can bring on pancreatic cancer. I ended up in the emergency department. I thought I had gall stones. I didn’t want gall stones because I heard they were pretty painful. Instead, I learned I had pancreatic cancer. When I went back to my PCP, my regular doctor had left for the day, and another one looked at my records, and asked me if anyone had told me that I have a mass on my pancreas? I told him, yes, I had just gotten the news. So, that’s how it all began.
BM: Each person is different, and each diagnosis is different. Obviously, this was horrible news, but given the variables in your equation, how did you handle this news?
KK: I think I went into complete shock. I had never dealt with cancer. No one in my family had ever dealt with cancer. I just did what everyone told me. You go see this doctor and that doctor. I had no recollection what I was going through until I went in for the Whipple Procedure and I was given my last rites.
BM: Following the Whipple Procedure, you made it sound like you had no options for treatment.
KK: I had no treatment options. My oncologist said to me, “If I were you, I would just get on an iceburg and push out,” which still brings tears to my eyes because at the time I was only 44 years. I wasn’t really thinking about dying or having cancer. The only thing that I knew about cancer was breast cancer. The only thing I could find was from the American Cancer Society, which said I might live five years, and I thought how could I work with that information? I do have to say, though, that I am still here.
BM: That’s fantastic and we want to talk about the course you have gone through since the year you were talking about, 1994.
By the way, we’re confident you will be able to learn some tips and tools to help you through your personal cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button below and then click on the bell icon. That way you will be notified the next time we post an interview. And if you or a loved one are on a cancer journey, please click on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”
Kay, it sounds like when you first got cancer, Kay, I am sure there was a lot you didn’t know, but I am sure you had lots and lots of questions. You were told you were given last rites, and you are still here. So, if you would, take us on the first steps of the journey from last rites, to combating pancreatic cancer
KK: That was quite a journey and a rollercoaster ride. You know, the first thing I had to learn was, when I grew up, I was taught not to question the doctor about anything he said or did. You didn’t take up their time, you did what they said, you never got second opinions. That was one of the most important things I learned, to ask questions. We do so much to heal our bodies; well, we have to heal our minds, too. I thought I was a pretty strong woman, but this brought me to my knees. I actually did a lot with the cancer support community. They told me it was okay to ask questions. It was okay to ask questions, and I continued moving forward in that path.
BM: So, it sounds like you got a second opinion and that led to the early steps of treatment, and with treatment, did you have options?
KK: My first diagnosis was in 1994. There was one type of chemo, but it was not specifically for those with pancreatic cancer. A pancreatic cancer-specific chemotherapy wasn’t available until 2006. So, my options were kinda nil. I had what they call pancreatic cyst mucinous adenocarcinoma. This is a rare form of pancreatic cancer, so if they had chemotherapy for this, it would have been something that hadn’t been tested through clinical trials.
BM: Without chemotherapy for your type of cancer, explain what treatment looked like, going forward.
KK: I did qualify for what they call the Whipple procedure. It is a reconstruction of the digestive system. It is quite intense, and I was able to have that. I believe 15 percent of cancer patients were eligible for that at that time.
BM: What did you have to go through when you had the Whipple Procedure?
KK: They do an incision across your chest and your stomach. After the procedure, I had to carry a dishpan around with me for like two weeks because when you eat, you can’t keep anything down. I was very concerned about that, but I said to my surgeon, and he said, “By the end of the month, you’ll be eating steak.” Eventually my digestive system returned to normal. Also, you get very fatigued from the procedure. I can remember taking a shower and having to lay down afterwards. Cancer affects many things. It affects your everyday life.
BM: And what were your sources of support during that time?
KK: At that time, my faith was very strong. There were no sources of support. After my Whipple, I did go back to work, about a year or so afterwards.
BM: You’re entering a new phase of your life, a phase without a pancreas. What was that like?
KK: That wasn’t until my second diagnosis, in 1999. They told me to hope for the best and prepare for the worst. That year I was really excited about celebrating five years after my first diagnosis, but in 1999, they ran a CT scan, and the cancer came back to my pancreas. So, I did have a pancreatectomy, where they took out the pancreas and spleen. That was rather difficult to deal with because I became a brittle diabetic. That meant I had to take insulin. In the beginning I would take five shots a day. I wasn’t very open to the pump because I needed to have the control. The diet changed very much. Grease, sugar, because of the diabetes. You learn to read your stomach even more. With me, tomatoes. They were very harsh. I love spaghetti, but I would have to eat it in moderation. You go with the flow, you do what you can, as far as eating. I had to take digestive enzymes and control it.
BM: So, 1994 was your initial diagnosis and 1999 was your second. I am guessing at that stretch you thought cancer was behind you; and yet, you were hit with a third diagnosis. When was that?
KK: That was three months after the second diagnosis. I had a CT scan because they keep a close watch on it. That CT scan showed something in a lymph node, an enlargement, a mass. That was devastating. I was moving forward, adapting, and this was like taking three steps forward, and four steps back. It was a very depressing time, if I even had to think about treatment. This time I did go for different opinions because I initially heard the lymph node was inoperable. I went to a lot of healthcare facilities here in Arizona, but I wasn’t ready to give up. I had survived two diagnoses, but I had talked to oncologists, and I found out that what I needed to do was talk to a surgeon. One of my oncologists sent me to a pancreatic cancer surgeon, who was a specialist. I was so surprised when he looked at my chart and said he thought there was something he could to fight this latest diagnosis. Then I started to go through treatment, but looking back, it took me close to a year before I found someone who said they could treat me. I was able to come home. He was able to serve as a support system, but treatment was going to have to include chemotherapy, and had the lymph node removed.
BM: Chemo is tough enough all by itself. We hear about the hair loss, the fatigue, food tastes terrible, etc. For you, what was the toughest part?
KK: The toughest part was the hair loss. Re-defining normal in your life is not easy, and to keep re-defining it was very difficult. I tried to be active at the cancer support community who had a lot of programs that helped me through the hair loss and the depression and kept me going.
BM: Do you recall what kind of medication you took for this third diagnosis?
KK: At that time, I believe it was only zofran and gemcitibine, and the side effects of gemcitibine were hair loss and fatigue.
BM: You have gone through three diagnoses, and again, one would like to think that cancer is behind you. And yet, you were hit with a fourth diagnosis.
KK: That one was in 2008, and that was tied to a spot on my lung. Pancreatic cancer often goes to the lung, liver and lymph nodes. I did have a biopsy done, but I really had to push for that. They didn’t want to go in because it was so small. I had started to get intrigued in research. I remember a researcher saying one centimeter can be a death sentence to a pancreatic patient. So, when I went in, I was a little insistent that I wanted a biopsy done because otherwise it would have been a case of waiting and watching. I had already been through too much with this cancer, and I did not want to wait and watch. I laid on the table for an hour trying to get this biopsy and finally said to the radiologist, “I think I have more faith in you than you do.” He finally said okay, and he did it. It came back and they said it was pancreatic cancer. I did have the option of surgery because of the location of the spot. I elected to have the surgery and elected to have the removal of my right lung, which was another devastating surgery.
BM: You’re talking lungs. How did this procedure affect your breathing?
KK: At first, I noticed a difference, but as time went on, my lung actually expanded. My lung is probably a pretty normal size. The problem I have is that this procedure involved cracking a rib and sometimes my lung gets stuck in the place where the rib was cracked. Yet I can still deal with high elevations, whether I am hiking or I am an air passenger. I have still re-defined my life as to what I can do.
BM: And how exciting is to know that you have been hit with pancreatic cancer, in slightly different versions no less than four times, and you are still with us, still going strong?
KK: It is surreal. I can’t believe it, but I always put one foot in front of the other and crossed each bridge as it came, and kept focusing on different things, not just the cancer, which helped me through.
BM: I have to ask. You were first diagnosed in 1994. We are recording this in the year 2024. Have you ever thought how much different your journey would be if you were diagnosed in 2024?
KK: It gives me chills just when you ask that because during my journey I have become a patient research advocate. So, I have been able to see all the advances. We have seven chemotherapies that are working well. The expertise of our doctors now is much greater. We now have pancreatic cancer specialists. We have clinical trials. I wear a smile on my face because I see what has changed, has changed for the better. It is going to get even better because we have some of the best researchers that are caring and committed out there working on this disease.
BM: Excellent, Kay. We are going to wrap up now, but I want to hear you elaborate on a word that you think is very important for anyone on a cancer journey, and very simply, that word is hope.
KK: Hope. For sure. That word is the magic word. It gets you through. If there is no hope, you have no fight, and without the fight, you have got a harder battle than you need to have.
BM: Kay, it is great to tally up a score of Kay four and cancer nothing. You have been diagnosed four times, and you are still with us and still going strong and we are so glad we got to hear your story. Thanks so much for being with us on Cancer Interviews.
KK: Thank you for allowing me to share.
BM: And this concludes this episode. We will wrap up the way we always do, with a reminder that if you or a loved one are on a cancer journey, you are not alone. There are people out there, like Kay, who have information and inspiration that can aid one’s cancer journey. So, until next time, we will see you on down the road.
Additional Resources:
Support Group:
Pancreatic Cancer Action Network: https://www.pancan.org
SHOW NOTES
TITLE: Kay Kays, Four-time Pancreatic Cancer Survivor – Sun City, Arizona, USA
When Kay Kays was diagnosed with pancreatic cancer in 1994, she not only had few treatment options, but she had no way of knowing this would be the first of four such diagnoses; but she survived each one, the last in 2008, and is still going strong. She is now able to do just about everything she could do prior to her initial diagnosis and continues the fight as a cancer research advocate.
Additional Resources:
Pancreatic Cancer Action Network: https://www.pancan.org
Time Stamps:
03:05 In 1994, Kay started feeling tired and sought medical attention, thinking she had gall stones.
04:32 With news of her diagnosis of pancreatic cancer, she was told she didn’t have long to live.
08:39 Recalls her lack of treatment options in 1994.
09:38 Describes a Whipple procedure.
12:45 Kay said this is what went into getting her pancreas removed.
14:42 Describes her third diagnosis.
17:29 Recalls the toughest part of chemotherapy.
20:51 Kay describes her fourth diagnosis.
22:26 Still going strong after four diagnoses.
23:25 The difference between being diagnosed with pancreatic cancer in 1994 and in 2024.
KEYWORDS (tags):
whipple procedure
pancreatectomy
zofran
brittle diabetic
kay kays
gemcitabine
pancreatic cyst mucinous adenocarcinoma
bruce morton

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