Interview with Debbie - conducted in Florida, May 7, 2001
Following is a question and answer session with Debbie. These questions were posed to her by some of her immediate family during their week in Florida. The goal was to answer some of the questions that you, her friends, family, supporters, and guests to this web site, may have. All visitors to this site are encouraged to ask Debbie further questions and to make this document an ongoing dialog.
Q How is it that when you first found out that you had breast cancer it was already at stage four?
A Lord have mercy I don't know. Apparently, well, I was nursing Aurora up until I found out, and yet in November it had started to become painful when I nursed her on the right side, maybe even more painful than it had been in the very beginning. Yet it hadn't been painful in nine months, apart from the occasional blocked duct. So this pain was strange. And it didn't ever get any better. But meanwhile we were travelling so much and we were arriving in Atlanta so I didn't have a lot of time to think about it. I did see a doctor when I got to Atlanta just before Christmas and mentioned to her that there was some redness and would she look at it. She just said probably a blocked duct - massage it, whatever, and everyone else I spoke to thought the same or maybe a yeast infection. I found myself favoring the other side. I was still nursing on the right side but not as much as the left side. So there was already something going on there. We left Atlanta in the middle of February to go to California and up to that point I had been working and had felt a lot of fatigue, but I didn't really question that, because Aurora still woke up often in the night. When we got out to California for a job for Dewey it was like a vacation for me, but I was still extremely tired and already feeling like I couldn't eat everything. My appetite was less, even than in Atlanta. Then Aurora refused to nurse on the right side, she knew that it hurt me cause I'd say 'ouch' and even just cringe when she'd be nursing there. I thought she decided not to nurse on that side because it hurt me, I later found out that there were other reasons, she knew something was really wrong. But when that happened, the right breast got really engorged. I don't recall a lump before that. But what happened was about five days later we were in L.A. and I finally woke up crying because I was in so much pain, was so exhausted, I didn't know what was going on. I was already feeling a bit nauseous and had a metallic taste in my mouth, so I went to go see a doctor. He took a look and said it's a staff infection (mastitis) and gave me ten days of strong antibiotics. I couldn't even touch it, it was rock hard, swollen, hot, red, all these things. Four days later the swelling did go down, but now I felt all this hard tissue everywhere. But in the meantime, we had travelled up to San Francisco. We had planned to return to L.A. by the 15th of March and I'd go back to the nurse for a breast exam then. At the end of the antibiotics, I still didn't feel better, I was still nauseous, the breast didn't hurt as much as before but there was so much hard tissue. We spent the day at the emergency room at Alta Bates, and saw 2 doctors who said 'aren't sure, probably still mastitis', more antibiotics. 'Maybe yeast infection', so Diflucan, and set up a meeting with a breast surgeon to ask about what else should be done. He ordered an ultrasound and a mammogram to make sure there were no lumps or abscesses. The ultrasound showed no lumps or abscess - just a lot of dark areas, which they said that was inflammation. I had hooked up with a lactation consultant who got me using a breast pump and who spent a lot of time with me trying to help the breast. I saw the breast surgeon who said keep doing what I was doing and check back in 2 weeks. I was having to use pain medication to sleep and sometimes during the day too. I hated that - all these pills. When I left the surgeon's office I went to a bookstore to look up 'mastitis'. I found a paragraph about inflammatory breast cancer under the section on mastitis - that was the first time I thought of possible cancer, and the description of the symptoms fit perfectly. So I called the doctor the next day and left a message asking him if he had ruled that out. He called me back four days later to say that he did not think it was IBC and when I asked 'are you sure?', he said he believed he'd seen enough IBC to know the difference. He then said 'let's go ahead and do a core biopsy anyway, just to rule it out.' I had that biopsy a week and a half later. It surprised everybody when the biopsy came back as advanced breast cancer. The doctor called me the next morning (March 30) rather than after the weekend when I'd been told to expect the results.
Q-What kind of breast cancer do you have, and how many stages are there?
A- He said it was infiltrating ductal carcinoma, stage three, possibly involving the nodes as they were swollen. There are four stages, stage IV meaning it has travelled to other other places. I saw the oncologist on Monday and he was concerned about the pain in my left hip, so he ordered a bone scan and x-rays of my hip, a muga scan to test my heart as my chemo would be hard on the heart, and a CT scan. We found out on April 10 that I had five tumors in my bones also which made the cancer stage IV. We were extremely grateful to find out the next day that it had NOT gone to any other organ. Dr. Eley, here in Atlanta, has seen a lot of IBC and said it was inflammatory breast cancer. One oncologist I saw in San Francisco said 'the important thing to know is that this is ABC (aggressive breast cancer) and to deal with it aggressively.
Q How do you feel about the daunting statistics for surviving this type of breast cancer?
A If the survival rate is one in a hundred, or one in a thousand, I'm going to be that one. When I found out that it was in the bones as well, and so classed as incurable by modern medical standards, it was daunting, but when I found out it was not in the organs I rejoiced. I was ready for that, and it would have just made it an even more spectacular healing. Statistics don't matter because everything is possible with God. I'm not gonna give up.
Q Besides the chemotherapy that you are undergoing, what other alternative treatments are you taking to battle your cancer?
A Well that is something that is great for me because I don't feel like I have to rely on just one thing. My doctors have told me that they are limited in what they can do for me with the big three anyway. Definitely the most powerful alternative therapy would be prayer, that is huge to me, that is important, and many people are participating both in my presence and on their own, that's a huge one. Then there are lots of other physical things that I'm doing and investigating still. I am juicing vegetables, diet is very important, getting the most nutrients that I can in the best way, organically, so none of the chemicals. I'm trying to cut down on all of that. I'm doing a complementary herbal protocol alongside the chemotherapy and I feel really good about being able to do that. There are still many other herbal therapies that are available that I'm not doing now, so its not like I'm trying to do everything all at once. I also take Barley Green and Essiac tea that lovely Max made up for me. I've started a meditation class that incorporates yoga so that's on a spiritual or mental level, trying to do visualization, using acupuncture. These have all been helpful. So, yes, there's lots out there and I'm pulling in whatever I can. It's these complementary therapies that I believe will stay with me, that I'll continue to do throughout my life after the cancer is beat.
Q What are your thoughts of the idea of this clinic in Mexico you have heard about?
A I'm interested in knowing more about it. I want to know facts. Its there in my mind and I know that it exists as an option. I don't feel a great need to go there right now, but its one of those things in the list of many that I can pursue further down the road if I need to.
Q What books are you reading to educate yourself, and which books have provided the most help?
A I'm reading a lot of books. But I suppose the ones that have been the most helpful so far - there's one that a herbalist wrote called 'herbal medicine and cancer ' by Donald Yance that I've found fascinating because he explains the cancer process as well as discusses the different herbal and supplemental therapies and treatments that you can do alongside traditional therapies. He uses scientific terminology too. There's a book by Anne Frahm, called the 'cancer battle plan', which I've found very helpful.
Q Is your cancer painful?
A Yes it is painful, and it is in degrees of pain. I know its nothing like some pain that I've heard described, so it's a bearable pain, but sometimes it keeps me from sleeping, and that's when I have to take pain medicine. So, yes, there is pain involved.
Q Does the cancer in your bones affect your daily activities?
A Yes. My left hip causes the most trouble. I guess it was the first place the cancer spread to, and its been affecting me since December, so well before I found out I had cancer. I already couldn't put all my weight on that leg and I've had to support it to go up and down stairs or to get back up from squatting and that does affect me all the time as a mother. Now that I know what the pain is, I also have to be careful what I do and how I move as the bone is weakened and could break.
Q Like picking up Aurora?
A Its affecting how I care for Aurora because I can't pick her up whenever I want to and its hard if something happens to her and I want to pick her up. I actually have to think about how I do that or if I can do that, someone needs to be around, its too dangerous to carry her up and down stairs. Sometimes my leg gives out and when I catch it, it jars which causes a lot of pain.
Q What do you miss doing most of all?
A I miss not being able to run into the waves and jump while I'm here in Florida. I miss being able to play with Aurora in the way that she I were able to before. She's getting bigger and wanting to be more rough and tumble sometimes, dancing - I'm always having to be careful of that leg.
Q What is the best thing that has come out of you having this cancer?
A So far I would say that it has brought some healing to relationships which is something that matters to me so I really like that and its brought lots of people closer and certainly that's been a very great thing. Many long-ago friends who hadn't been in touch in years and found each other again - it's so much fun!
Q What one thing or person has been your biggest inspiration or motivating factor thus far in your fight against cancer?
A I would say that little Aurora definitely motivates me, or I get strength from her and want so much to be there for her. I suppose that is the biggest thing that makes me, not to undermine anything else, obviously Dewey, my family and everything, but little Aurora, who doesn't have any control over what's happening. Its actually two-fold because Dewey and I have both said to each other recently that we don't know if we could go through this without her. Because she's something for us to focus on that is not just the cancer and her needs and her little self is so very important to both of us. She's been the focus of our lives really since she was born, even before then, and that way she is a strength to me and she's a diversion for both of us. She provides a lot of entertainment for us too. She's such a joy. When I get sad its usually triggered by thoughts of Aurora and just, you know, wanting to be there for her, that's a longing that I have.
Q What is/are the most important things to you now?
A Love and loving, and being loving. I keep thinking about how God is love and perfect love casts out fear, and so I think that's why the fear is not huge in me and or not even really there its cause I'm leaning on God and His love is shining through everybody around me and through the people writing on the website leaving messages and praying. There's so much love and that's the overwhelming thing to me. I do think that's the most important thing that I see because when we love we are experiencing love. When we love we're more thoughtful about others, we're more caring, we're more giving, we're not selfish and that just seems to be a very important thing to me right now.
Q Debbie, how has your haircut affected your outlook on your cancer?
A Well I'm glad that I got it cut short when I did, because it definitely made me feel more in control.
Q Do you mean the first time you cut it?
A More the second time. The first time wasn't so big of a step even though it was more hair, and although it looks, well, like someone who has chemo, except it doesn't yet because its not shiny bald, it also still looks like just another style, albeit a radical one.
Q Does it make the cancer seem more real?
A Actually doing it made it seem more real, yeah. Putting it on the web and everything, its, like, obviously everyone knows why I did it.
Q So it makes you feel like you are more in control?
A Having cut my hair, yes, having done it, having had it cut, definitely yeah. I wasn't mourning it falling out. I didn't want to do that.
Q How does it feel to have all your hair cut off?
A Actually it being cut off, that wasn't so hard, I've always loved my hair, I've had great fun with my hair all my life, and its funny that I hadn't even trimmed it in two years. I was just letting it go to see how long it would grow. I knew at some point I was going to do something with it, so I just got to do something a bit more extreme than I probably would have done. Cutting it this short, now I know what all the guys feel like when they do it, its really weird how you feel all the cold on your head, it kind of goes in waves. It definitely cuts down on shower time, I don't have to wash it like I did before, I don't even have to think about it, its really kind of freeing as Karen fox said on the website, it really is kind of freeing in a way.
Q Has it changed the way others treat you?
A I think so. But when I go out I'm not really noticing it, I'm not looking at people. So I'm not noticing people looking at me so much.
Q How has your diagnosis affected your husband Dewey and your daughter Aurora?
A Well, it's thrown all of us for a loop . It was unexpected. We were just about to return to our home in France, to lead the life we had really been wanting to live for a long time in that Dewey would be painting full time and I'd be caring for Aurora. Its been so long since we'd actually been in that situation that having to postpone or drop that idea and concentrate on my health - that was hard for me, and I know its hard for Dewey because he was finally going to have a reprieve, and not only did that not come, but its all the things that the cancer means and is so huge on top of, on top of an already worn out person. So it affects Dewey ...its really hard on him, harder than it is on me I think. And as far as Aurora, she obviously is so little and she doesn't really know what's going on but she does know that I'm not well and she's learning all kinds of words like 'medicine' and 'breast' and 'ouchies' and 'boo boos' and 'sad' and 'sick'. She does know that things are going on and it makes her sad. When I had to be away from her for 6 days getting the radiation tests, she would say "mommy's sick", "Aurora cry". so I think she's a lot more aware at least on some level about everything that's happening and it does affect her. Of course, too, she had to associate the weaning and the hair not being there with me being sick. Those were the two hard things that she's had to readjust to. The weaning was going to come anyway, but at this time, that was just an extra hard thing for her.
Q How can you or how difficult is it for you to remain so positive?
A It's the only way to be, there's so many things that help me to be positive like the faith I have in God, and the knowledge that He is the Great Healer, the Great Physician. All the prayers that are going up - that helps me to be positive, the stories I'm hearing of other survivors, and the miracles that have happened. I tend to be a positive person anyway it's my nature to be optimistic, I just couldn't go on if I wasn't that way. So I always have to find the positive side of something, and it's the same with this. It's just the only way to be.
Q What gives you the most strength during this time?
A Aurora and prayers.
Q From the beginning you have wanted everyone to know about your cancer, you've wanted every piece of info out there, you've faced this challenge head on, how are you doing it, how do you explain being able to do this?
A I wanted everybody to know so that they would pray for me. There are still many friends that I have yet to contact. I believe the more people thinking of me, the stronger I will feel. I need to know everything, to know all my options. I have a thirst to know and don't want to leave any stone unturned. Also by telling everybody, that's also more resources and more information that others can share. I've always believed in "ask and it shall be given unto you, seek and you shall fine, knock and the door will be opened unto you"". You have to do that. And this is one of those times where that makes a lot of sense. I couldn't bear to go through this alone and it feels so good to know that I don't have to.
Q I understand that you have private health insurance, is that covering your treatment?
A I have British health insurance with an emergency overseas coverage which will run out on June 18th. After that it will not cover any of the cancer treatments, unless we return to the U.K and seek treatment there. We are looking into Medicaid here in Georgia. It is a concern. There are a lot of unknowns there.
Q What other income sources do you have?
A At the moment we don't have any money coming in. Obviously I don't have a job. Dewey has several commissions to be painting, but hasn't had the time so far, looking after Aurora and me. So we are working on trying to free up his time in order to work, if possible. There is a fund that has been set up by concerned friends who want to help out to relieve some of the costs, like the living costs and supplements. Prescriptions are not covered by insurance and the anti nausea pills themselves cost 50 dollars each. The complementary therapies cost as well. We aren't quite sure how were going to do it all.
Q What is your outlook on the future?
A That's a loaded question. It changes all the time. I plan to be here till a really old lady. And see Aurora's grandkids, play double solitaire even though I have chemo brain, and fulfill the dreams we have for Les Meurs (our house in France). I will never be able to return to the life I led before, it will be different, but I intend for it to go on for a very long time.
Web Site Questions, Answers, Thoughts and Responses
Q Hi, this isn't a question so much, but just a comment on having read the interview. I could almost feel how stunned you must have been when the diagnosis was first made. It is very scary to realize that this could happen to anyone really.
A Justine, thank you for sharing your thoughts. I do hope that my story will make young mothers and those that care for them aware of the possibility of breast cancer and inflammatory breast cancer especially. From the stories I have read, it is often misdiagnosed and everyone loses valuable time as IBC seems to always be discovered at Stage III at least... There are some good web-sites about IBC specifically and I will post them for those interested.