Saturday, May 21, 2016

You Can't Cure Cancer with a Foam Roller

Many of you remember when I made the bold mistake of trying to learn something new at age 43: riding my bike clipped into my pedals. On May 7, 2015, on my sixth ride clipped in, I fractured my distal radius (broke my wrist) in a parking lot fall.

During my seven weeks in a cast, I did very little exercise because I didn't like the feeling of sweat and swelling in the cast. So when it was removed in June, I was excited to get back to slow running as part of my routine. On my first day back, I started feeling pain in my left butt. Figuring it was just a sore muscle or something from being out of shape, I lowered my mileage and started diligently stretching and foam rolling to try to get rid of the dull pain. I also googled my symptoms and found that they matched with periformis or sciatica, both common running conditions. A PT suggested possibly a herniated disc, so I stretched for that, too.

When the pain still didn't go away by September 2015, I decided to take a running break. I didn't run, but I did go to Method 360 and spin classes and continued doing family activities (pumpkin picking, walking up the hill to the Carrier Dome, etc). I also decided to see an orthopedic specialist, who agreed with the possible herniated disc and encouraged the running break. Follow-up in 3 months.

By December 2015, my butt was actually worse, to the point that I was limping on bad days. It was a sore, somewhat stabbing pain, always in my butt, despite being told that it was coming from the nerves in my spine. The act of rolling over in bed, using my muscles to twist my body, was actually more difficult than walking. I gave up exercising all together.

At my orthopedic follow-up, an MRI of my spine was ordered. The results came back showing a bulging disc that wasn't quite touching any nerves (so it shouldn't have been causing pain), but a radiologist, who I will never meet but will always hold in high esteem, wrote a note recommending another MRI for a better view of my pelvis due to my history of cancer. At my appointment a few days later, I got the weird results that I had evidence of a pelvic fracture.

That highlighted area (my highlights) says something about, "additional imaging may be look for other lesions which would raise suspicions for metastatic disease." This is where my paranoid and pushy personality took over. The PA reading the report to me brushed over this part. He was focused on the "pattern of bone marrow edema (swelling)...suspicious for stress or insufficiency fracture". I was drawn directly to the words "metastatic disease". The word metastatic means that cancer has spread from it's original location to a new one. Although I am no better than the average person at reading this gobbledygook, I realized that this report was not ruling out that my cancer was back.

Thinking about this news of a pelvic fracture, I was baffled. Why the heck would a healthy 43 year old who exercises regularly and has not had any pelvic trauma just randomly get a pelvic fracture? I hadn't really increased my running, unless you count not running for 7 weeks and then going back to 5k distances. Why was it still getting worse even though I wasn't running? Basically, WTF?

I called my oncologist and asked these questions. I wanted something that could see in there and tell me if there was a metastatic tumor. So although he was kind of nonchalant about my worries, he did agree to a bone scan and bone density test. He also ordered a blood draw for a full workup or something. All of these tests took place in January.

Here comes the first scary part. I woke up one morning a day or two after that blood draw and reached for my phone like always. I mean, someone may have liked something on my Facebook page while I was sleeping, right? There was an automated email from the oncology center that the bloodwork results were ready. I clicked on it and scrolled through 3 screens of every bit of my blood falling in the normal range. Then, one of the very last lines had something called "Cancer antigen 27.29". It was above the normal range! I think normal was 0-39 and my level was 45! The ONE line on those pages of blood results that had the word "cancer" in it was the ONE that was abnormal. At 6:45am, I was lying in bed reading that my cancer was back! I was too stunned to even tell Paul who was lying next to me.

Obviously, I called about it as soon as the kids got on the bus. I left a message and the call back from a nurse came soon with the news that, "Oh, that's no big deal. People go over on that reading for lots of reasons. Could be plenty of things besides cancer." Later, at my follow-up appointment about the bone scan results and bone density test, a nurse again told me that they see that "tumor marker" in the 100s or even 1000s, so I am okay. And the bone scan results were just about the same as that highlighted MRI: Can't rule out cancer but we think it's a fracture. 

The only change that was made in January 2016, with all of these dots not connected yet, was that I was changed to a supposedly more effective estrogen blocker. I had been taking Tamoxifen for 4 years, the standard treatment for pre-menopausal women. My oncologist decided to move me onto Femara for extra insurance on the estrogen-blocking front. In order to do so, I have to get monthly shots of Lupron to put me into menopause. Hot flashes were no big deal compared to the looming cancer, I figured.

From January until April, I hung out in wait-and-see mode. I was completely resting my pelvis, not doing any exercise beyond the minimum amount of walking required to substitute teach and cook dinner. And I really started to feel better. There was still a dull pain, so I didn't think running was in my cards yet, but when I went to an April checkup with the orthopedic specialist I was ready for a referral to physical therapy so I could start getting back in shape. However, pushy me, I said, "Since I'm feeling better, I assume the pelvic fracture would be mostly healed. Can we do another MRI to rule out cancer?" He agreed to my request.

On the morning of April 28, 2016, I went to have an MRI done to prove that my pelvis was all good. It went smoothly and on my way out, the technician asked, "Have you scheduled your follow-up?" I confirmed that yes, I'd be back in 10 days or so to meet with the doctor. Done, and out for a regular day. That afternoon, I was folding laundry with 6-year-old Reese in the room, and a scheduler called. "I'm calling to see if you can come in on Monday. The doctor would like to see you sooner about your MRI results."

Have you EVER had a doctor call you to move your appointment closer? That could NOT be good! I said this to her. I was 100% aware that she had no idea what the results were, but I insisted vehemently over the next 2 minutes on the phone that someone MUST call me right away to let me know what's going on. She said that the doctor was in surgery and was going to be off the next day. I continued to insist on someone, anyone calling me as soon as humanly possible. It worked. The orthopedic doctor, whom I had never met, called me from his personal cell phone within the hour to let me know that yes, there were a number of lesions on my pelvis that looked like metastases. Here's the report (highlights are mine):

After that phone call, I explained to Reese (still in the room) what was going on and called Paul. Then I called my oncologist's office and had them request the results. Then we went on to have a normal weekend, including riding child-sized scooters, slightly panicked, but what else can you do?

Soon, I was scheduled for a CT scan and more bloodwork. Paul and I met with the oncologist on Wednesday, May 11 for results. The CT scan showed the same lesions but nothing in my other organs. We'd gone a couple weeks knowing about the likelihood of bone mets, but in our first official conversation with the doctor, he got to report that there was no more bad news. So yay! Best mets ever, right?

That cancer antigen 27.29 is up to 48, which Dr. K (oncologist) says is the same as 45. My knowledge of math says otherwise, but again, when comparing it to 100s and 1000s, I guess they're pretty similar.

One little caveat here: Everything I am reporting here is based on scans. I have not had a biopsy of the bone lesions yet. Therefore, we do not KNOW for sure that these are cancer cells. Dr. K says that he's 95% certain that it is cancer. When I ask what else they could be, he doesn't have an answer. That's why I gave him the "thank you". Now we can treat this issue I've been dealing with for almost a year. It really helps psychologically to have a diagnosis.

Here's my summary of all of this yapping I've been doing: A year ago, there were some very small lesions of breast cancer growing in my pelvis. They weakened the bone so that when I ran, it fractured. All of the scans after that had too much swelling from the fracture to see the little tumors growing. Now that the swelling has gone down, we can see the 4 lesions. 

Or in other words, last summer, I was trying to stretch and foam roll in order to make some cancer go away.

Monday, May 16, 2016

The Best Bone Mets Ever

This is the hardest kind of blog post to type. I'm going to make you sad and I don't want to.

For a few months, I've known about signs that the breast cancer is back. In fact, for almost a year*, my body hasn't been quite right. I've lain awake in bed thinking about the what ifs. Paul and I have talked about being on the wrong side of the odds and we've met others who are parents with cancer. So we're prepared. You're not.

Last Wednesday, my oncologist told us with relative certainty that the four lesions we're seeing on a pelvic MRI are metastatic breast cancer. My first response was, "Thank you." Why? Because it's been months of uncertainty and questions. Finally, we had a truthful answer. "Thank you for your honesty," I repeated.

So, while you're reading this and maybe tearing up or feeling sad for us, know that you are worse off than we are right now. The girls know and they're outside playing with their friends. I'll be going on a field trip with the first graders tomorrow and driving to lacrosse and gymnastics later this week. We're okay.

This picture of me was taken two days after finding out about my bone mets. I'm okay.
The facts: What I now have is stage 4, metastatic breast cancer in my pelvis. The cool way to say it is "bone mets". I am aware that as of 2016, this is incurable and I'll most likely die from it. But I'm also aware that oncologists have a wealth of knowledge that they didn't have even a few years ago. If you try to google, you'll get bad news about life expectancy, but keep in mind that those statistics include people who already died before new treatments were available. So actually, I do not recommend that you google at all.

Here's what we're doing about my bone mets right now. We're assuming that these are the same type of cancer cells that I had back in 2012, meaning they grow on estrogen. So we will continue to suppress my ovaries with injections of a drug called Lupron. Then I will continue to take a drug called Femara which bonds to any leftover estrogen before it can find the cancer cells. The new treatment I will get is an infusion called Zometa. This doesn't actually fight the cancer in my bones, but it strengthens my bones so that as cancer cells try to grow, the bone cells are stronger and don't let them take over.

My first Zometa infusion is on Wednesday. This is not a lose-my-hair-and-puke kind of drug. I guess I might feel like I have the flu for a few days afterwards. Then back to normal life.  A one-degree-of-separation friend had been on Zometa for 7 years and just recently had the cancer spread to her lungs, so hopefully taking Zometa will give Joe Biden time to cure cancer before I get any more mets.

I'll also be visiting Dana Farber in Boston for a second opinion, so we're covering all bases. Then I'll continue to be Mommy and go on family trips and be Mott Road's HSA (PTA) president. So don't be sad for us. Maybe just go outside and play.

*Long story of what's been going on for the past year to come soon.