I've had so many wonderful and supportive friends ask how my trip to Boston this week went, that I'm going to do one of my really long blog posts to explain everything. I've decided to write this in the form of a FAQ, and I'll start with some popular questions before moving on to the Dana Farber trip answers.
How are you feeling?
Totally normal. No, I'm not exaggerating or trying to hide anything. The truth is that this breast cancer in my pelvis doesn't hurt. I know it's there because of MRIs and a CT scan, but the best way to describe how it feels is to have you picture lying on your side for half an hour reading a book. Eventually, you turn over to your other side, right? Do you turn because you were in pain? No. It was just uncomfortable. That's how I feel if I'm on my left side for too long. Uncomfortable. But if it weren't for the scans, I'd just assume that my 44-year-old body gets tired of being on one side more quickly than it used to.
How can I help?
This is the most popular question I've been getting because I seriously have the kindest friends in the world. All I can do is take rain checks right now. As you just read, I feel absolutely fine and I want to take advantage of being able to cook dinner, drive my kids around, and clean for myself (or, more accurately, choose not to clean). But in 2 years or 5 years or hopefully 10-20 years, we'll need the help. I'm saving all of these messages and will call on you then, okay?
Are you in denial?
Since my original cancer diagnosis in 2012, I've had two friends receive much more serious diagnoses than mine. I remember giving them each their hugs and support, and hearing them say with a smile that their treatments are working and they have great doctors and that they're luckily feeling good for the moment. In my head, I was too realistic to just accept all of that. These women both had terminal cancers (one has since died), and I was afraid that they weren't comprehending that.
Now, I understand their answers. I have terminal cancer and I'm not in denial. But forgetting about it and going about my normal life with a smile on my face is absolutely the only option. I guess I'd have every excuse to lock myself in my bedroom with the curtains closed and eat cookie dough every day, but my normal life sounds better. However, I will admit that I've spent over 100 hours in Stars Hollow, CT over the past month. That is my escape when I need it.
What do you mean, terminal? You beat this before, right?
This is stage 4 breast cancer we're talking about here. Barring a runaway bus accident or a yet-to-be-discovered cure, I WILL die from this. Stage 4 breast cancer is treatable, but not curable. Every bit of treatment I will receive can help either shrink the tumors or slow their spread to other organs, but I will always have cancer. I cannot beat it.
Stage 4? Is it huge?
No, the four tumors I have in my pelvis are actually very small. It is called stage 4 because it is not in my breast any more. When I was initially diagnosed four years ago, I had a larger tumor in my breast which had spread a little to the lymph nodes under my arm, but since it was all local, it was considered stage 3a. Now that those breast cancer cells have figured out how to grow elsewhere in my body, they get promoted to stage 4. And since these breast cancer cells were so smart and they figured out how to grow despite the chemo and radiation I endured back then, they will continue to grow throughout my body, sooner or later.
What about the treatments?
I've been taking a pill to block my estrogen for four years now, and luckily, I don't have side effects from it. The doctors believe that is still working to slow the cancer from spreading, so I will continue with that daily pill. Now, the plan is that I'll be getting an infusion of Zometa once every 3 months to strengthen my bones. If the bones are stronger, the cancer will have more difficulty growing and taking over in there. I had my first infusion a few weeks ago and didn't seem to get side effects from that, either. Achy the next day, but nothing else. So I am in treatment, but it doesn't affect me much at all.
Why aren't you doing chemo again?
This was a question so obvious that even 8-year-old Maggie asked it. I've asked many doctors, including Dr. Google, and it just won't work right now. Although there are many different formulations of chemotherapy, once breast cancer recurs outside of the breast, the traditional throw-up-and-lose-your-hair chemo would just make me miserable and not extend my life for as long as other treatments will. The plan I have to follow is to get the treatments that will give me the highest quality of life for the longest possible time. That type of chemo doesn't fit that plan.
Could this all be a mistake?
Here comes the first answer to the Boston question, and it comes with a story.
When I initially met Dr. M in an exam room on the ninth floor of the Dana-Farber Cancer Institute in Boston, she asked to hear my story. I spent 5-10 minutes telling her everything I've told you in "You Can't Cure Cancer with a Foam Roller" and then she told me to put on a gown that opens in the front and she'd be right back. She was gone for about half an hour, leaving me wondering if she actually thought I was that inefficient at undressing. But when she came back, and she sat down and started talking, it became clear what had taken so long. She had actually walked down the hallway to see a radiologist, and the two of them had pored over my scans and talked about them.
Dr. M said that they started with my April scans, the ones in which my doctors in Syracuse had recognized the cancer with 95% certainty. Dr. M and this radiologist who spends all day every day looking at pictures of cancer said that it was absolutely, undoubtedly cancer. Then, because I had told her about my MRI last December which had shown a possible fracture in my pelvis, she and the radiologist looked back at that scan. To these experienced cancer doctors, they saw it back then, too. However, they kind of understood how someone who works at an orthopedic office might mistake it for a fracture. So it's been there for a while. (I guess I could say that might be good. I mean, there's been cancer in my pelvis for many months, and the tumors are still less than 1/2 inch long.)
So, what did they say in Boston?
After Dr. M did a quick examination of my chest, she sat down and started to talk. She clearly and concisely gave me a tremendous amount of information, most of which I already knew from the constant reading I've been doing over the past month. Generally speaking, we are 100% on the right track, but there are four changes she recommends and we'll be following.
1 - An obvious question we've had for the past month is about getting a biopsy. If there's cancer there, why aren't we sticking a needle in and taking out some cells to find out about it? Dr. M agrees with Dr. K in Syracuse that it most likely has the same attributes as the original breast cancer, so we should treat it as such. Also, sticking a needle into bone often results in getting lots of bone cells and not enough tumor cells to really answer all of the questions. However, she does recommend giving it a try. It's a simple enough procedure that it can be done in Syracuse, and we'll then have all of the information.
2 - There was a conference just last week where new research was presented. Dr. M and Dr. K both attended. Up until now, stage 4 breast cancer patients have been treated with an aromatase inhibitor (AI, which is my pill called Femara) until it stops working. Then they would give a pill called iBrance (which I intuitively spell with a lower case i like iPhone, but I don't know if that's truly how it's spelled). According to this recent trial, half of the patients were given iBrance at the same time as their AI, and half were given just the AI. The iBrance patients did better. So, I'll be starting iBrance, which I really hope comes in a white package with an apple on it.
3 - I currently get shots to put me into menopause so that the AI will work. Although my gynecologist once recommended an oophorectomy (ovary removal), Dr. K said that the shots work just as well to shut down the ovaries, so no need to have surgery. Dr. M recommends the surgery, so I'm going to go for it. Supposedly a minor surgery, and it will give all of you local friends dying to help an excuse to cook for me.
4 - I've asked both oncologists about radiation targeted to my pelvis. Evidently, the only reason doctors recommend radiation is to relieve pain. Since the cancer will always be there, and I'm taking the medicines to prevent it from spreading, there's no need to radiate. However, if I were complaining about pain, probably from the tumors touching some nerves, radiation could shrink the tumor enough to relieve that pain. Here's where I fall into a bit of a unique situation. Since I like to run and lift, and I experience pain when doing so, shrinking the tumors can improve my quality of life. I'll be calling my local radiation oncologist now to see what she has to say.
While I was with Dr. M, I went through a full page of questions that I had prepared for her, and she took the time to answer every one honestly and thoroughly. Now, my name is in the system at Dana-Farber, so anytime that I feel I need an appointment (either something getting worse or something I want a second opinion about), I can just give them a call or schedule another visit.
My appointment was just what I'd hoped for: a validation that we're doing the right things, and a chance to speak with the best of the best about my terminal cancer.