On April 14th, 2009 the alarm went off. My hand went to the snooze button; my husband’s hand went to my breasts. I’ll help you out here, by skipping ahead of a few details of that morning to this part. He said, I keep forgetting to tell you, but your breast is swollen, did you know? I hadn’t noticed, until I thought about it later. I had just gotten back from a spring vacation trip and had noticed my bra seemed tight on the left side and was leaving marks on my left breast. But when I put on weight, I totally gain in my breasts, so I had chalked it up to that.
Later that day, I looked in the mirror to see what was going on. Almost half of my left breast was pinkish, red. It was substantially larger than my right breast. Those of you that have breasts certainly know that one can be larger than the other, but this was more than that. I had an area of noticeably thickened skin. It was impossible to pinch the skin on this part of the breast because it was hard. I really hadn’t noticed all that before. So, I did what any normal person would do, I googled it. At first, all I came up with was mastitis. But this didn’t make sense as I was way, way past the breastfeeding days. Instead of typing in swollen as a keyword, I typed in inflamed and the results I got back made my heart just sink. I had several symptoms of inflammatory breast cancer (IBC). A web site I was looking at said something like: “Do not go to your nice family doctor down the street if you have symptoms of IBC. They will not know. They will tell you that you have mastitis and prescribe antibiotics and in the meantime, this aggressive cancer will grow and spread. It can come on as quickly as overnight. Mastitis is uncommon unless you are breastfeeding.” You’ll never guess what I did then, so I’ll just tell you. I picked up the phone and called my nice family doctor down the street because I had no idea where else to start. I saw him that afternoon.
At the doctor’s office, my blood pressure was through the roof, but, thankfully, I only had mastitis and I dutifully went to the pharmacy to pick up my antibiotic. And before I left his office, we had a little conversation about patients researching things on the internet and how it can wreak some havoc. And I was relieved, for about two seconds, until I got back on the internet and googled some more. I made several calls searching for an appointment for a second opinion. I had an appointment scheduled with a large teaching hospital an hour away, but they couldn’t get me in for two weeks. After several phone calls, the best I was able to do was get in the following week with a general surgeon at a smaller hospital.
The doctor wasn’t interested in doing the skin punch biopsy that I requested when I saw him a week later. How did I know that I needed to ask for a skin punch biopsy you ask? Why the internet, of course. IBC grows in sheets in the skin. In addition, a tumor may be present, but not always. So a skin punch biopsy takes a sample of the affected area about the size of a pencil eraser and they test it to see if they can find any cancer cells. Sometimes they can’t detect the cancer cells, because they are not condensed in a tumor and are too diffuse to detect, so IBC is often a clinical diagnosis. Meaning, someone who has seen it before and knows what they are looking at, should be able to look at it, and tell you if it’s IBC or not. Hmm! He couldn’t feel any lump, but I told him I could. I kept trying to tell him that I had several symptoms of IBC and finally he said that he had seen a lot of cases of IBC and I didn’t have it. Which made me wonder, just how many cases of IBC this general surgeon had seen in his lifetime. I mean, it’s pretty rare. It makes up 1%-4% of newly diagnosed breast cancers each year. Out of 240,000 new cases of breast cancer each year, that would equal 2,400-9,600 cases of IBC per year. I mean, I can’t see them all flocking from around the country each year to seek out a general surgeon in Tualatin, Oregon, with no expertise in the area of breasts in particular.
In the meantime, I found information online about MD Anderson Cancer Center in Houston, TX. They had recently started the first Inflammatory Breast Cancer Clinic in the world. I called down to the clinic, they took down all my information and symptoms and called me back and said they had run it by the medical director
in the undiagnosed breast clinic and my symptoms sounded alarming and they would like to schedule an appointment to see me. And I was totally stoked that someone was finally listening to me, but then snapped back into the reality that I am in Oregon, which is a long damn way from Houston. So I told them I would think about it and get back to them. And I didn’t call the clinic back. But a few days later, they called me to see if I wanted to schedule that appointment and I said, you know, I think I’m overreacting, I’m going to hold off on scheduling that appointment. What if I spent a bunch of money flying to Texas, renting a car, having all these appointments, paying for a motel and it turned out to be a big, fat nothing. Then I would feel really stupid and guilty for spending the money, which would be way more fun to spend on just about anything else, instead of on figuring out you don’t really have cancer after all.
And then, at 3:50 in the afternoon on Friday, May 1, 2009, I got the call from the local surgeon. The same man that had told me two weeks prior that I didn’t have IBC. But to humor me since I was so persistent, he had ordered an ultrasound to see if I might just have a cyst. The ultrasound technician poked around over my inflamed area and was going to call it good when I asked her to check out the other side of my breast. One wave of the magic wand and she said, I’m going to go get the radiologist to look at this (never a good sign). The radiologist waved the magic wand on me again and ordered a mammogram and then ordered an ultrasound guided biopsy, which turned out to be a 6 cm tumor (which grew from nothing to holy crap, this is a big hard lump, in about a week, literally). Anyway, back to 3:50. I was in my car with all my kids driving them home after school. I had to keep the doctor on the line long enough to get into my driveway so I could get away from my kids to have the conversation.
Doc: I’m sorry to tell you that you DO have cancer. Based on your age, you’ll probably need chemo. And based on that comment, with my superior Google MD knowledge, I knew that he didn’t really know much about IBC.
Me: What are the odds that I have IBC since I have several of the symptoms that you said were not IBC?
Doc: Well, often times it comes down to a clinical diagnosis, so come see me Monday.
And now picture the bubble over my cartoon head with this in it: I don’t think so, you were wrong the first time. I laid on my back on your exam table with my breasts out while you patted my leg and told me there’s nothing wrong here, just a little mastitis. We’re going to change your antibiotics.
And then he started to sense how freaked out I was because I kept pressing him for more information and a plan and he had nothing, and it was Friday afternoon, and it was his day off. But he did say he would put in a call to an oncologist and try to work me in as soon as possible And my head was spinning.
So I called my husband and I had to tell him I had cancer. That sucked. Needless to say, he didn’t take it very well, but I was reminded why I married him in the first place. He told me I was his whole world and he couldn’t live without me.
That was a crappy day, but deep down I already knew I had it. The frustrating thing was that neither of the doctors I saw thought I had it. But, I’m pushy and reading about IBC on the internet scared the living crap out of me and it only took me from April 14th to May 4th to get the correct diagnosis. I had stage IIIC inflammatory breast cancer and was ER+, PR+ and HER2+.
I came home to Oregon and started chemotherapy, which pissed me off. Then my head started to ache and my hair fell out, which really pissed me off. Then, anything I put in my mouth tasted like slimy metal, and that pissed me off. And my body ached, which pissed me off, and about one day between every chemo session I just felt like I couldn’t get out of bed, which pissed me off too. And then, 4 1/2 months later (which is a relatively short period of time and treatment cycle for cancer patients) I was done with chemo. And I was not pissed for a whole week, because I went back to MD Anderson Cancer Center and they ran some tests and the doctor said, congratulations, you had a complete clinical response to chemo.
The internet says that means, based on imaging and clinical exam, their best guess is that my cancer is gone, but you really need to wait until you have surgery, and have the tissue examined, and get your real results from the formal pathology report. So like I said, I was happy for a week, because I felt like I was cancer free. And then it hit me. I realized I was going to have to have this damn surgery in two weeks. And somehow, I went to sleep the night before, and woke up the morning of, and showered and got dressed and got in the car and let my husband drive me to the hospital and walked back to the pre-op room and got into another gown with my rear-end hanging out this time, instead of my breasts. And bawled my eyes out until the breast surgeon called the lovely anesthesiologist in to give me a little something in my IV to calm me down. And I woke up a few hours later, missing a very intimate body part, and my husband was relieved, because that was all part of the solution and he couldn’t live without me and he was so happy any little left over cancer cells that might have dodged the chemo bullet, were out of my body, but I was really, really pissed off!
I started 6 weeks of daily radiation (which actually means Monday through Friday). Since I had IBC, I had an extra strong dose of radiation that included the radiation technicians trying to burn the crap out of my skin, by placing a piece of rubber called bolus, on my skin. This allowed the radiation beams that usually target areas underneath the skin, to really focus on the surface of my skin. I had four fields of radiation. I got my very first tattoos, which is how they line you up perfectly for the radiation beams. I know, pretty lame, I have one pinpoint tattoo on each side of my ribcage, one in the middle of my chest and then at the last minute they had to place one on the top of where my breast used to be. Which pissed me off, because it was a different technician and that last one is larger, and more noticeable to me. I was one of the lucky ones though, because I came away with minimal burning. It was a cake walk compared to chemo and surgery. But I must say, having to bare your scars to different radiation technicians every day really, really sucked. During my simulation session, where they do your initial tattoos and then a CT scan to line you up to map the field of radiation, I had tears streaming down my face the whole time. You have to lie perfectly still on a hard table with your hands above your head and I just kept crying silently, trying not to move. They kept coming out to ask me if I needed a minute and said they knew how scared I must be. When in reality, I wasn’t scared; I was just completely mortified that my mutilated body was exposed for all of them to see. Nothing they hadn’t seen before a million times, but my first time baring my new body. And before I knew it, I was done with radiation.
Eventually, I woke up one day and realized I was done with chemo, had my surgery and was finished with radiation. I met with my oncologist who is in the room with me for all of two minutes while he says, you’re looking good, feeling good, you must be good, see you in three months. We had already had the discussion about follow up care which consisted of me taking a pill called tamoxifen for five years since I was hormone positive and continuing with the drug Herceptin for one year. You think if you have cancer that they might want to scope you out at least once a year to see if it came back, but nope, most oncologists do not do that unless you are stage IV. Unless you have a symptom, you are considered cancer free. If you do have a symptom they will evaluate the situation and more than likely order a scan to see if your symptom is in fact the return or spread of your cancer. My oncologist said that research shows that finding a recurrence or spread of cancer earlier with a scan does not increase your survival time over finding it based on a symptom. And so you find the problem earlier, and begin to treat the problem, which is what makes you feel like crap, the treatments, not the cancer, initially. And you end up with a poorer quality of life because of the treatments, because you will ultimately die at about the same time, according to the research.
Initially, I was not happy AT ALL with this follow up treatment plan. New treatments are in clinical trials all the time. This leads to new treatments being approved by the FDA. This leads to possibly keeping you alive longer. I looked on the internet, of course, and found some research that supported the notion that you are better off finding breast cancer that has spread to the brain, sooner, rather than later. And if you can catch cancer that has spread only to your bones, there are many treatments that can keep the cancer away for many years for some, but if you don’t catch it, it may spread to other organs, which is a more dire situation. I really don’t know what is better, waiting until you have a symptom or the stress of getting scanned and waiting for results. The problem with no scanning is that you have just gone balls out in trying to kill the cancer and now it feels like you’re doing nothing. And you have no idea what symptoms might be arthritis or migraines or stomach aches or a bad cold that make you cough and which ones might indicate that cancer has returned and spread to your bones, your brain your liver or your lungs. So that is the new reality. Hopeful and positive one minute and the next, thinking the shoe will drop, or will somehow be whacked against my head really hard. How can I be a part of the group that lives for many, many years past diagnosis?
And finally, moving on to the aftermath of it all, breasts. What do you do when you are missing one and the other one is just the shell of its former self because you have lost 45 pounds since you were diagnosed? Of course, I spent time googling breast reconstruction surgeries. There are a couple of options for re-creating them. So, I had a left latissimus dorsi flap surgery with expander and will swap it out for an implant in about 6 months. Then I will have a lift and reduction with implant on my non-cancer side. I had told my husband the last couple years that I really needed to do something about my chest, what with having three kids and getting older and gravity. But he just looked me dead in the eye every time I mentioned it and said, I love you just the way you are. But here I am in a roundabout way, doing something about my chest. Be careful what you wish for.
And to sum it up, I couldn’t have made it through this last year without the love and support of my husband and my kids. I know it hasn’t been any easy year for you at all and I wish I could have a do over on how I handled a lot of things. But, I am who I am and I reacted the way I reacted and I love you all more than the air I breathe. There is nothing more important to me than each of you all and I am totally excited to get on with life with you. I couldn’t ask for a better husband or kids. And my best friend Carrie, who took my kids for 12 days while I took off to Texas and orchestrated a meal calendar and took me to chemo and to the look good, feel better class for bald, sick women, and for so much more (like cleaning my house, holy crap! that was awesome), and for my other best friend Elizabeth who kept tons of people updated on my happenings (which resulted in a prayer group saying prayers for little old me and by some miracle, it worked) and for trying to make me laugh, and helping me get a new primary doc and so much more and my other best friend Kim who was the best listener and somehow seemed to know the right thing to say and I know you’ll be thinking to yourself that we didn’t see each other that much, but honestly, you gave me just what I needed, and to my family and extended family who have been my cheerleaders and just getting together for normal family functions even though it may have seemed like I was checked out, was so damn good for my soul, and Jillian who wrote me the best letter ever which I still have and cherish and to all the countless people who brought me meals and gifts and flowers and all the people who have prayed for me and supported me and sent me cards and thought about me and offered to help me. It means more than I can ever express. Thank you!
And for those of you who are thinking, why did she hide under a rock all year, to then come out with all these personal details and share them with the world? And I have realized this last year that writing it down and hitting the send button somehow sets me free. And of course, a big thank you to all my internet sisters out there. Where we can discuss bowel problems, other unmentionable side effects, stupid people, recurrence scares, sorrow, joy, dying and living. Thank you for that safe and honest place!