Carol Lacey Description
Carol Lacey was diagnosed with metastatic cervical cancer, and survived, but in order to do so, she had to undergo a total pelvic exenteration. This procedure resulted in the loss of several organs. She needs to wear a colostomy bag, but maintains a sunny disposition.
In 2011, Carol Lacey, of Boulder Valley, California, was 46 when she began experiencing pre-menopausal symptoms. There was discomfort during sexual intercourse, the onset of pre-menopause. She was seen by a gynecologist and subsequent tests revealed a mass. The gynecologist immediately called for a biopsy. About four days later, Carol received a call confirming the mass was indeed cervical cancer. The doctor set up an appointment with an oncologist.
Crying, Carol called her fiancé at the time, told him she had cancer, and asked him to meet at the oncologist’s office. Over the next three months, Carol had some pre-surgery chemotherapy, a radical hysterectomy, then post-surgery chemotherapy because alymph node was found that was cancerous.
Carol Lacey’s diagnosis of metastatic cervical cancer was preceded in 2009 when a pap test came up positive for human papilloma virus. Carol didn’t know a lot about HPV, but was told it was a common virus that often is vanquished by one’s immune system. However, in Carol’s case, the virus was persistent, and that’s what caused her cervical cancer diagnosis.
After her post-surgery chemotherapy regimen, Carol avoided painful internal radiation, but was put on external radiation. About ten months after surgery, Carol had a reoccurrence. It was then that she was told her treatment option was a total pelvic exenteration. Carol had no idea what this entailed, so she Googled it and learned that it calls for the removal of many organs within a woman’s pelvic cavity. That meant her bladder, colon, anus and vagina.
She went through the procedure and now wears both a colostomy and an ostomy bag, which each carry her waste.
The total pelvic exenteration was tough enough, but Carol also went through chemotherapy. She could live with the hair loss, but even now she is battling tinnitus, a byproduct of her taking the medication, cisplatin, after her first surgery. The cisplatin caused a hearing loss, which necessitates a hearing aid.
Carol Lacey went through a tremendous challenge learning how to maintain her colostomy and ostomy bags; but with help from her partner and help from an outstanding ostomy nurse, she manages them as best she can.
Nonetheless, Carol says can swim, hike and hit the hottub the same way she could prior to her diagnosis.
By way of advice, Carol says anyone diagnosed with cervical cancer should realize thet are not alone. She says there are many support resources, including the one on which has relied and continues to rely. It is Cervivor, and its address is https://www.cervivor.org. Carol’s top of mind message for anyone diagnosed with cancer is that they are nor alone.
Additional Resources:
Support Group: Cervivor https://www.cervivor.org
TRANSCRIPTION
Bruce Morton: Greetings and welcome to the Cancer Interviews podcast. I’m your host, Bruce Morton. Every cancer journey is different in terms of who was diagnosed, their medical history and the type of cancer that was detected, a lot of variables. Our guest on this segment is Carol Lacey of Boulder Creek, California. She has survived metastatic recurrent cervical cancer. So, Carol, welcome to Cancer Interviews.
Carol Lacey: Thank you, Bruce. It is a pleasure to be with you today.
BM: Now let’s talk about your cancer journey. I am guessing you were in pretty good health prior to your diagnosis. Is that fair to say?
CL: Actually, I was. I was 46 years old. I had had an active life. I had raised two kids. They were young adults at the time of my diagnosis, which was in 2011. Life was really good prior to cervical cancer. It was quite a shock, as you know. It was pretty heavy and pretty life-altering.
BM: When did you notice something was abnormal, something that demanded medical attention. For you, what was it?
CL: I thought I was experiencing pre-menopausal symptoms. There was discomfort during sexual intercourse, you know, the onset of pre-menopause. So, I made an appointment with a new gynecologist, as many women watching and listening know, a gynecological appointment isn’t the best day and during my appointment, my gynecologist says that she sees a mass. She immediately biopsied that mass. I received a call about four days later saying that mass was indeed cervical cancer. I just remember crying. I am not even sure if I said anything to her because I was just in shock. She gave me the name of an oncologist. She said he was expecting me within the hour. I immediately called my fiancé at the time, and I think all that I actually could say was that I had cancer and meet me at this doctor’s office. Life just went super fast after that. I had a radical hysterectomy. I had some pre-surgery chemotherapy to shrink that tumor, and then after the hysterectomy I had to have some post-surgery chemotherapy and radiation because we found a lymph node that was cancerous. That was a whirlwind of three months.
BM: I would think so, and once you got that horrific news, what was your vision of what would have to be done regarding treatment over and above chemotherapy?
CL: I think that I thought a lot about life, how I was living life and what my future was going to hold. I was wondering, was I still going to be here? Was I going to be able to watch my children get married? A lot goes through your head during that time prior to getting ready for surgery or chemotherapy.
BM: In terms of things that might have led to this tumor, we have heard that something that can play a role in cervical cancer was the human papillomavirus. Did that play a role, and to what extent?
CL: Yes, absolutely. So, in 2009 was the first time during my cancer screening that a pap test that anyone with a cervix has, came up positive for HPV. I didn’t know anything about HPV at the time, so my doctor said it is an incredibly common virus that almost every adult will have at some time in their lifetime, and with most people, the virus just works itself of one’s body; but for some people like myself, the virus was very persistent, and that’s what caused my cervical cancer.
BM: When it came to treatment, as we mentioned at the top, each cancer is different, and each specific cancer can provide the patient with a number of treatment options or perhaps there were no options and there is just one route to go. Which applied to you?
CL: I just put my trust in my oncologist. He had recommended the radical hysterectomy for the best, immediate plan of action, and then after that radical hysterectomy, when we did find one of those lymph nodes was cancerous, that’s when he put me back into chemotherapy and then we did some more external radiation for my cervical cancer. Some women who are diagnosed with cervical cancer have internal radiation. I was not one of those people, thankfully. It is quite a horrendous treatment. External radiation and chemotherapy were quite enough. Then about ten months after that surgery, I had another reoccurrence. At that point, my oncologist tells me that one of my only options is to have a total pelvic exenteration. I absolutely had to Google this, but what a pelvic exenteration is it is removing many of your organs within your pelvic cavity. That would include my bladder, my colon, my anus, my vagina, everything was removed. I like to say I am sewn up like a Barbie doll. I now have to live with an ostomy and a colostomy. They are bags that carry my waste, instead of having it the normal way. It was a lot to process in that first ten months of being diagnosed, just a whirlwind, really.
BM: Carol, a lot of people have their plate full with just one procedure, but what was tougher for you? The removal of each of these organs, or just the thought that came with?
CL: It was just the overall thought. I mean, the first thing that popped into my head was that these were things that I attributed to being a woman. Knowing that those were going to be removed, a breast cancer patient would go through this as well, but I thought tat everything that made me a woman is going to be taken away from me. But I eventually realized I still am who I am. I still have a life to live, and I will just live it slightly different.
BM: I want to go through some of the things that you experienced. You went through chemotherapy. What was the toughest part of you and chemo?
CL: I thought initially it was going to be the loss of my hair, but after shaving my head, it was a bit empowering. What ended up being the hardest parts for me were the side effects from the chemotherapy. Right now, I am battling with tinnitus, which is related to the cisplatin I had during my initial treatment, then after my third reoccurance, where I had a bit more of that cisplatin, so I am only 56, but I have to get hearing aids because of loss of hearing tied to that. The side effects that are long lasting. They are forever. When you have chemotherapy and radiation, these things don’t go away, unfortunately.
BM: One other thing I was going to ask about is something known not so affectionately as ‘chemo brain.’ Has that manifested itself with you?
CL: Oh, gosh yes. I thought I was scatter brained prior to cancer, but after cancer, boy oh boy, yes, not just for me but for our cervical cancer community, also. It is just something that we have to deal with.
BM: Are there any ways you can combat that? We have one guest who will use her cellphone to make mental notes of this and that, that she has to do tomorrow or next week or something like that.
CL: Yes, absolutely. I cannot imagine we live without my devices. My phone, my iPad, they all help to keep me on track. You can have little ping reminders or little calendar reminders are super helpful in making sure that you are not forgetting all of those special, important things that you have to get done on your appointment calendar.
BM: You had mentioned the ostomy. Not a pleasant subject. On two fronts, how difficult was it learning how to maintain it yourself as I suspect that would be something you have to do three or four times a day?
CL: Yes. Living with ostomies is quite a challenge. I think the first year I really struggled. Thankfully I had a partner that was a caregiver. He was incredibly helpful when it came to learning how to maintain my ostomy. I had an ostomy nurse prior to my surgery and then after my surgery who helped to recommend different products that are great, and I also found online communities. There are great groups on Facebook and other social media platforms that are there just for ostomies. I have two ostomies, which are not as usual as one ostomy, so it has its own struggles, its own challenges. But I do everything that I did prior to my ostomy surgery. I swim, I hike, I hottub, I enjoy my life just as much as I did prior to cancer.
BM: I think you have already my next answer, but I am going to ask it anyway. At any time was there emotional trauma that came with trying to incorporate the ostomy bag into your daily life?
CL: Absolutely. I still have days where I am frustrated if I have a leak or if something goes wrong. We also have embarrassing moments in life, with or without ostomies. It just happens.
BM: You mentioned hiking, swimming, all these outdoors activities. In what areas can you not do what you used to do? It sounds like so many facets of your everyday life are intact, or you say, sewn together.
CL: I have yet to come up with something that I have not been able to do. I am not quite as comfortable wearing a slinky white dress maybe, but everything else that I want to do that I have done in the past, I move forward and do it, and nothing is stopping me, especially not my ostomies, and I think a lot of people that live with ostomies feel that same way.
BM: What I find amazing from listening to you with all you have been through, is that you somehow maintain a sunny disposition. How do you do it?
CL: Not every day is sunny and perfect; but I have to say that the story that came to me during my reoccurance was my memory of my great aunt, Anna. She was a wonderful woman in my life and I was very grateful to have grown up with her. Any time anyone would ask her her age, she would say, “Honey, I stopped counting the years and only count my sunny days.” I thought that was just about the best response that any woman could possibly give, so I thought when I was going into surgery for my pelvic extrantion, I remember her voice in my head, saying, “More sunny days,” and that became my mantra.
BM: And you have taken that mantra, you have put it into action, and it seems like you are doing it on an ongoing basis, maybe not every day, but pretty close to every day. At this point, Carol, we are going to start to wrap things up and while we start our interviews from the same place, we end them from the same place with this question: If you found yourself one-on-one with someone who has just been diagnosed with cervical, and had a message for that person, if there was one point you really wanted to drive home with that woman, what would it be?
CL: I think the first thing is that you are not alone. There are so many support organizations, support resources out there for you, no matter what your cancer diagnosis is. You don’t have to go through this alone. I think that is the overriding message I would have for anyone.
BM: Carol, that’s going to wrap it up. Thank you so much for your time and a message that is informative, and just the way you have dealt with everything is an inspiration for anyone who is watching or listening. Carol, thanks very much for your time, thanks very much for being with us on Cancer Interviews.
CL: Thank you, Bruce. Have a great day.
BM: You, too. That will conclude this episode and we hope it can improve the cancer journey for you or a loved one. So, until next time we’ll see you on down the road.
Additional Resources:
Support Group:
Cervivor: https://www.cervivor.org
SHOW NOTES
TITLE: Carol Lacey, Cervical Cancer Survivor – Boulder Creek, California, USA
Carol Lacey went through an arduous journey but survived cervical cancer. In addition to undergoing radiation treatment and chemotherapy, she had six organs removed. Despite having not one but two ostomy bags, Carol continues her work in the tech industry and leads an active life. She also works with a support group, Cervivor, which seeks to help those diagnosed with cervical cancer.
Additional Resources:
Cervivor, a cervical cancer support group: info@cervivor.org
Time Stamps:
03:18 Carol saw a doctor who detected a mass that turned out to be cervical cancer.
04:45 After the diagnosis, life changed quickly, starting with a radical hysterectomy.
06:13 The role of human papilloma virus in her diagnosis.
08:36 Post-surgery reoccurrence of cancer necessitated a total pelvic exenteration.
11:18 Carol recalls the toughest part of chemotherapy.
14:33 Dealing with ostomy bags.
17:36 Carol is asked what everyday activities she cannot do because of her ostomy bags.
19:24 Describes the important of the cervical cancer support group, Cervivor.
28:12 Carol reminds those diagnosed with cervical cancer that they have many support resources.
KEYWORDS (tags):
cervical cancer
cancer
metastatic recurring cervical cancer
cancer interviews
total pelvic exenteration
bruce morton
ostomy nurse
carol lacey
pap test
tamika felder
external radiation
internal radiation
human papilloma virus
tunnitis
radical hysterectomy
chemotherapy
lymph node
colostomy bag
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