I’m pretty sure this is going to be one of the most difficult posts I have ever written. It doesn’t bode well that I have had to scrap it and start over several times. I’m not really even certain that I want to write it. I wonder if this is one that I will regret writing somewhere down the line. But, what I have finally decided is that I have to write it. No matter how this whole thing turns out, maybe someone else will benefit and be inspired. Maybe this will answer the questions that everyone keeps asking. Maybe this will make the future a bit easier. So, here goes.
There is some speculation that I might have breast cancer. It is merely speculation at this point. While the simple answer would seem to be, ‘go have that shit checked out’, there is no such thing as simple in my world. Here’s how this whole thing happened…
I had this really bad issue with my right breast. It got all sore and red, and there were these big hard spots along the bottom and side that were tender and wouldn’t go away, no matter what I did. I pumped up my immune system from the inside out. I applied poultices and oils and drank herbal teas. After a few days, I started feeling much better. Great, in fact, but my breast wouldn’t clear up. It didn’t hurt anymore, but it didn’t look very good. Okay, it looked really bad. After a couple of weeks, it was still tender, especially those hard spots, but there wasn’t any real pain. It just didn’t make sense and it wasn’t like any infection that I have ever dealt with in either myself or my clients. So, I started researching and digging a little deeper into some of the medical possibilities. No matter how I twisted it, everything seemed to be pointing toward a possibility that I didn’t want to face. Inflammatory breast cancer. I was getting kinda scared.
While I know that everyone is very clear on how I feel about most doctors, the truth is, I have many associates in the medical community that are open-minded enough to recognize the value of natural therapies and are willing to discuss many medical issues with me. I often consult with them and we have wonderful information exchanges. I figured now was a good time to start calling them.
Let me just say right now…if someone had told me that I would be texting pictures of my boob to friends and family, I would have called them a liar. I’ve sent more boob texts in the last couple of weeks than any cheap floozy out there! Anyway…I did it. I sent them the pics and told them the story and waited for just one of them to say, it is most likely just an infection…nothing to worry about. Instead, they all kinda freaked out. Without exception, they all voiced my own fear. Inflammatory breast cancer was a serious possibility.
Still, I didn’t want to overreact. I took a day (or 4) reading everything I could find about Inflammatory Breast Cancer (IBC). I read legitimate medical info, I read personal stories, I read treatment options, I read symptoms, I read case studies and prognosis outlooks. I talked to anyone who I thought might have something to offer that I hadn’t found. Sadly, there isn’t a lot of info out there because there isn’t a lot to be had. During this four days of intense research, my phone was blowing up with friends and family begging me to just go get a diagnosis. Despite the fact that I was treating it as if it were, in fact, cancer, I was caving under the pressure to visit a ‘real’ doctor. I knew I was going to have to eventually, but again, I didn’t want to overreact. Finally, I caved.
Here was what I knew going in:
IBC is a relatively rare form of breast cancer.
IBC won’t be detected by mammogram, PET, MRI or any of the normal breast screening options. Abnormal areas can be seen on an ultrasound (which will also show infection, if it is present) or thermo imaging. Mammograms can make this type of cancer worse, too, according to some of the research.
IBC is highly aggressive, often showing up within a week or so, and moving quickly through the body.
IBC has a very low survival rate using standard cancer treatments like chemo, radiation and mastectomy.
IBC is often misdiagnosed as mastitis, especially in women past childbearing or in/after menopause. Valuable time is often lost treating it with several rounds of antibiotics before they are willing to do a biopsy.
Things weren’t looking good, my friends.
Through a series of fortunate events and tons of help from family, I was able to get an appointment with a surgeon at DePaul who deals with breast cancer, as well as an ultrasound on the breast. The ultrasound came back completely clear, except for a few areas of ‘skin thickening’. I was told that my breast looked very healthy, with no signs of lumps or infections. Still, the skin thickening was concerning and she would send the images to the surgeon with me. While this seems to be good news, the truth is, it is pretty in line with IBC. IBC does not form lumps like most breast cancer. It forms layers, or areas of thickened skin that are actually cancer. Understandably, this news didn’t make me feel any better.
My meeting with the doctor was rather…awkward. I did not want to let the words ‘mastitis’ or ‘cancer’ come out of my mouth. I did not want to pass any preconceived notions on to him. I didn’t want him to know the conclusions I had come to, or that I had done any research on it at all. If that was an issue, I wanted him to be one that put that card on the table, not me. I especially didn’t want to mention IBC, mostly because I didn’t want him to brush me off as a hypochondriac who runs to the doctor all the time over nothing (if he only knew!) So, I told him how it all had happened – the tooth infection, the sore breast…all of it.
He laughed at the notion that the dental issue could have had anything to do with an infection anywhere else in my body. That was my first sign. I should have just left then. I didn’t though. I stayed and heard him out.
The ‘specialist’ told me several things during that visit. He told me that his gut told him this was just a very bad case of mastitis, despite the ultrasound showing no sign of infection. He told me that he wanted to prescribe me a round of the ‘most powerful antibiotics available’. He also insisted that I get a mammogram. You all know how that shit went over, right? No need to explain? He refused to do a biopsy until after I did those two things. I tried to discuss the issue with him, but he laughed. Again. What kind of doctor does that? He told me that the only other option with my symptoms would be what is called Inflammatory Breast Cancer, but he didn’t want to jump straight to that conclusion, so we were going to assume that it was not until after the antibiotics. I asked him to verify the info that I had concerning mammograms not being able to detect IBC and he clearly said, ‘You are correct, but let’s give it a shot, anyway’. I knew it was time to go, so I left.
Walking out of his office, all I could do was play the conversation over and over in my head. I was pissed, but not surprised. It played out exactly as I had expected. Exactly as it has played out for nearly every woman who shared their story of IBC. I also knew, without a doubt, what I needed to do. I needed to assume the worst and treat it as such until I could figure out if I wanted to try and fight for another option at diagnosis. I knew that chemo, radiation and mastectomy were not options. I knew what that decision would entail. I knew what I NEEDED to do. I knew how to treat cancer. I knew the options -both legal and not-so-clearly-legal. I had the info I needed to start.
That was last week. I’ve spent my time searching for other answers. I am trying desperately to prove it all a lie. Something else could be causing this, right? The thing is, I can’t find it. I can’t disprove it. The more I learn, the more the answer seems pretty obvious. Still, though…
I have found a local ND who offers breast thermography, but only every 3 months. I have an appointment set up for the next time it is available. September 23. Three days before my 18th wedding anniversary. The day before Paige’s baby shower. Answer day.
In the meantime, I will keep treating it as I have been. It is looking better. A little, anyway. It feels better. I have to trust that what I am doing, what I have always said I would do, what I have spent the last twenty years telling everyone else will work, is actually working.
To my friends and family, most of you understand where I am at and where I am going. You support me in these decisions I am making, in spite of your fears for me. I am overwhelmed at the amount of love and support that you have all shown so far, and I thank you for it from every corner of my heart. I can only ask that you all continue to trust me. Trust that I have every intention of getting back to the healthiest version of me. Whether this really is cancer, or just the bad infection from hell that won’t disappear, I will treat it in the way that I believe gives me the very best chance of surviving for as long as I can. Understand that I intend to live to a very old age, annoying everyone that I possibly can with my hippy, witchy ways.
To those who have questioned me in the past about the strength of my belief in natural medicine, know this: I will prove it if I must. This path that I have chosen, while maybe not easy, is the path that I believe offers me the best chance of surviving. The fact that it is happening to me does not change my belief. My fear will not make me change my mind.
To those who want to scream at me to get the chemo/radiation/mastectomy should it come to that, just don’t. You don’t have to agree with my decision. You don’t have to like it. This path is mine, not yours. I ask that you either respect my choices in spite of your doubts, or simply keep them to yourself. I do not have the energy to fight your biases and my own body at the same time.
As for the waiting…well, we wait. I tell myself that the symptoms will go away before I make it to the thermography appointment. I tell myself that I’m only tired because of stress. I tell myself that the discomfort and other oddities in my breast are just some freak thing, but not cancer. I tell myself that I’m only staying sick with this chest cold and sinus infection because my system is tired. It is all getting better, though! I feel a little better every day. Things look a little better every day.
I wonder how many women before me have sat where I am and waited, wondered. Is it REALLY cancer? Do I REALLY want to know if it is? What if it is? What then? Were they as scared as I am as they waited? Did they play out the million different versions of a future they may not have? Did they play the same head games with themselves? Did they hope that when it all played out they would look a little silly for assuming the worst, because that option is so much better than the alternative? Did they wonder how they were going to afford the simple act of being diagnosed, let alone the treatments? What will I have to sell? What will I have to borrow? What will I have to DO?
I don’t know what September 23 will bring for me and my family. Maybe a chance to celebrate, maybe something far less happy. I’ll let you all know how things turn out, but I don’t know that I will write much more about this issue, unless it is share the successes or failures. I do know that, in the meantime, I am taking the time to focus on me. I am looking very closely at every aspect of my life and my health in a way that I never have before. I am concentrating on the things that really matter. My husband. My children. My grandbabies. My family. My friends. I am finally understanding things in a way that I never knew I didn’t understand in the first place. This life is short. Take every opportunity to tell people how much you love them. Let go of the little things that don’t really matter. Hang on to the little things that matter more than anything. Accomplish something every single day, even if it is only something small. Make someone’s life a little bit better every chance you get. Smile. Be strong. Hold on to hope. Offer hope to others. Be a friend. Let others be a friend to you. Live authentically and stand for something. Make sure that, if today is your last day on Earth, you left behind a piece of yourself that will bring someone comfort, joy, hope and a smile when you are gone. And, should things go as hoped, make sure you have surrounded yourself with people who will sit around the campfire with you, laughing at the close call while doing shots of tequila.