One year ago this weekend, on February 3, 2018 it was confirmed that my breast cancer had spread to my liver. According to the statistics, I probably shouldn’t be here today. Yet, here I am.
I was diagnosed with stage 0, DCIS (ductal carcinoma in-situ), non-invasive, breast cancer in August of 2013. In April of 2016, through a swollen lymph node and a follow up bone scan, a few breast cancer spots on my spine were discovered, bumping my diagnosis to stage 4. In December of 2017 in a routine scan there were four little suspicious spots found on my liver. It wasn’t obvious at the time that it was the breast cancer spreading, so my oncologist let me go six weeks and then we would complete another round of scans. That six weeks was up on February 3, 2018.
My oncologist, at the time, was at the Cancer Treatment Centers of America in Zion, IL, about 30 miles north of Chicago. I remember heading up there so confident that everything was going to be fine. The spots were not going to be cancer, in fact, I wouldn’t have been surprised if the spots were gone. Four little spots showed up out of nowhere, they could disappear just as quickly. I really had zero fear in my body that I would receive bad news that visit. I thought we would check in and my doctor would say, “Things look good! You’re ok!”
As my oncologist walked into the exam room that Saturday morning he had a somber look. I think his words were “It’s not good.” When you hear those words you can feel your stomach just drop and hit bottom. It was now clear that the cancer had spread to the liver and the four spots were slightly bigger and now there were a total of eight spots. I looked at him thinking … he’s not talking about me … this can’t be right. I just had a PET scan in December and nothing showed up in the liver (the spots were too small to be picked up on the scan). I sat there looking at the actual scan on the doctor’s computer as he pointed out all the different spots. “There’s one there, there, there” … I just wanted to yell at him “Enough already! I get it!”
I had worked through most of the emotions around the cancer spreading to the liver back in December. There were about 2 hours after we received the results from the CT scan that we thought the cancer was in the liver. My doctor ordered an MRI and based on the results of the MRI it didn’t look like it was cancer. In those two hours between those scans, my mom, Brandon and I cried and were trying to mentally prepare for the changes in treatment that were coming. We knew then that the plans we had laid out for the future were changing. We also sent out messages to our family and close friends to pray… pray, pray, pray! When we received the news it didn’t look like cancer was in my liver we thought we just experienced a Christmas miracle! We left the CTCA on cloud nine thinking we had just dodged a very big bullet.
On that day last year in February when the doctor told me the cancer was definitely in the liver and it was growing, I just felt numb. I thought, “It’s not supposed to be this way… I’m supposed to be fine… If anything, my cancer should be getting better, not worse.”
The doctor said the next course of treatment was going to be the medication Ibrance and Fosladex. Fosladex is a hormone receptor degrader that you receive by injection. I received my first injection of Fosladex before I left that day and then the Ibrance would be shipped out from a specialty pharmacy.
We left shortly after to start the long drive home. I made a post on Facebook that read…
Here we go… lesions are still there and have grown with a couple new ones, too. 😔 We’re taking that as the cancer has spread. The spots were too small to be picked up on the PET scan I had 6 weeks ago. The spots are still too small to biopsy at this point and the bigger spot (of the smaller spots) isn’t in an easily accessible location. So we decided to go ahead and change the medications I’m on to a more targeted drug called Ibrance. I’m also switching my hormone suppressant to an injection, Fosladex. The Ibrance can affect my blood cell counts so I’ll be monitoring my blood work closely.
I’ll return in 3 months for another round of scans to see how the new drugs are working. In the meantime I’ll be searching out even more options for me to pursue to help my body in any way I can. I’m definitely not out of options but was hoping my first treatment option would have worked for a longer time.
Facebook friends… Go live your life! Follow your dreams, take that vacation, make those memories, do what makes you happy, don’t wait for tomorrow… Take those next steps now!!
We’re on our way home to hug my girls so, so tight and put on my fighting gloves because this will NOT bring me down. I’ll take some time to process but I’ll get back up and keep going. 😊
I appreciate your prayers and good thoughts now more than ever. Sending you all my love and gratitude! ❤️
On that drive home I realized just how quickly life can change. I was getting really confident that my cancer was stable and I could live a very long time maintaining my bone mets. I had many people telling me that with breast cancer in the bone, there are people that are still here 25, even 30 years later. I thought “Yeah, that is going to be me!” Brandon and I were making plans for the future. I was starting to think about going back to work but not in the teaching field. I had started taking classes at Ivy Tech because I was toying with the idea of going to nursing school. It may sound crazy that a person with stage 4 breast cancer was thinking about investing in nursing school but I really planned on being here for many more years to come. Now, on that drive home the reality that my life could be cut short was starting to sink in. I had to start preparing to talk to my girls that their worst fear may actually come true. If it was in my liver, how long could I actually live? Now I’m back to square one, putting all my time in energy into fighting this cancer. There would be no extra time for nursing school.
I always knew that Ibrance was the next step for me if/when my first medication, Arimidex, stopped working. It was always explained to me that it was NOT chemo. It was a targeted therapy that you take by pill. I was ok with a targeted therapy because I didn’t want collateral damage from trying to kill the cancer. After I took a couple days to sit with the new information, I went to the computer and I started reading about Ibrance. I did read that it was NOT chemo but it did hurt healthy cells and could drop your blood counts. That didn’t sound good. I had spent much of the past three years doing whatever I could to help boost my immune system. I tried to help my body through the foods I was eating, the supplements I was taking, the exercise I was doing. I was avoiding hurting my healthy cells at all cost. If I started Ibrance I was going to start hurting my body rather than helping it. I just wasn’t ready to do that.
Finding my own way
Over the past three years I had been trying to educate myself on anything out there in the holistic world that could kill cancer. Foods, supplements, cannabis, experimental treatments, etc. I knew there were many holistic options out there that I could try I just needed to find the right place that offered the treatments. I was researching as much as I could and so were Brandon, my mom, my sisters, my mother-in-law and many other people. We were all trying to figure out what should be my next steps. I always felt like there would be a time where I would have to look at my oncologist and say “I hear what you are saying, but I’m choosing to go a different route.” A pretty gutsy move to make. I wondered that week after my news if this was “go time”. Is this when I tell my doctor I’m going a different route?
Through researching on the internet we found The Hope 4 Cancer Center in Mexico and was making phone calls to them and I was seriously considering booking a flight and heading down there the next week. I looked at all of the treatment options they offered and they were right up my alley. It was all nutrition based and they used some experimental light and ultrasound therapies, too. In researching their different treatments I came across a clinic in Carmel, IN called The Health and Wellness of Carmel that offered the same treatments as the clinic in Mexico. With Carmel being much closer than Mexico, I decided to make an initial consultation with Dr. Fetters at the HWofC. After meeting with Dr. Fetters, I decided I wanted to give his treatments a try. I was indeed going to tell my oncologist that I was going to pursue a different course of treatment. I did, however, need someone to do a scan in three months to check in on my progress and he agreed to do that. He wasn’t happy with my decision but in the end I was still their patient and they needed to follow my progress.
The past year
I have spent the past year receiving treatments from Dr. Fetters. (I’ll go into more detail in an upcoming post) The first round of treatments, sono-photo dynamic therapy, didn’t work and the cancer ended up spreading even more throughout the liver after three months. That’s when I ended up doing low dose chemo treatments over the summer. Once it had spread aggressively over three months, I realized I needed to move past worrying about collateral damage. I just needed to stop the cancer growth. Those chemo treatments were rough, even at a low dose, but the cancer did shrink significantly and my tumor marker went back into normal range.
Then, I ended up leaving my oncologist at the CTCA and went with a doctor in Richmond, IN at Reid Hospital that was more open to me pursuing both traditional and non-traditional treatments. After the low dose chemo treatments, I tried a round of a different experimental treatment, Supportive Oligonucleotide Technique (SOT), from Dr. Fetters. We have to go about these treatments slowly so the cancer was starting to grow again and that’s when my new oncologist and I decided to pull in my current medication, Verzenio. It is very similar to Ibrance. I have been taking the Verzenio along with the SOT treatments I’m doing with Dr. Fetters. My scan as of last week showed that the spots on my liver had reduced in size pretty significantly since my scan before starting the Verzenio. All things are moving in the right direction!
It’s not over yet
As I realized that it was a year ago that the cancer was confirmed in my liver, I wondered if it was a big deal that I’m still here one year later. How long do people typically live when the cancer has spread to the liver? That is one thing I don’t like to do… Google my survival rates and statistics. I just don’t like having those limitations in my mind. I don’t want to know what “should” happen. I would rather focus on what I WANT to happen. So I’ve never looked up what the typical survival rate is for metastasis to the liver. I mentioned this to a my friend, Jennifer, the other day and she asked if I wanted her to look it up. I trust her, so I said, sure, just tell me what I need to know. After a quick search around she said it looked like typical survival is 4-8 months once the cancer has spread to the liver if left untreated. Whoa! I had a little sneaky fear pop up thinking.. “Oh my God! I’m going to die! I don’t have much time left!” Haha! I had to snap myself back out of it and take a moment and realize just how well I’m doing! I realize most people are going to treat their cancer and there are always many different variables to consider but I would say that the fact that I’m still here one year later is pretty miraculous! Considering, I’m feeling the best I have felt in years. The picture up above is from my family snow tubing with friends this morning. I got my 10,000 steps in by 2:30pm today!
Another good sign that my liver is doing well is the fact that I was actually able to complete a 10 day cleanse this month. My body has never liked to do a cleanse. I’ve started one a few times before and I would feel so horrible the first day or two of the cleanse that I just couldn’t go on. I’ve been feeling really good lately and so I decided I would give a cleanse another try. I especially wanted to do one after receiving the chemo this past summer. The first couple days were a little rough. I had some joint pain pop up, I felt really tired and I even started running a low grade fever. It wasn’t horrible and I was able to push through. After the first two days I started to feel back to normal and towards the end of the cleanse I was feeling really good. Fresh and rejuvenated! I was reminded by my friend, Jennifer, that if my liver was very sick I wouldn’t have been able to finish the cleanse. I would have felt horrible with nausea and vomiting… I’m sure I would have stopped the cleanse. So the fact that I finished the 10 day cleanse and felt really good at the end says a lot. Jennifer said, “I think you can consider yourself a walking miracle!”
There may be some cancer in my liver but that organ is a big one and it sounds like there is much more healthy liver than there is sick. My oncologist said last week after my scan that I could be on Verzenio for as along as two years before I see progression of the cancer. I’m not putting all of my eggs in one basket so I believe the combination of everything I’m doing to help my overall body and my liver will help me be that walking miracle for many years to come! After all, I have many adventures planned for this year … scuba diving, Grand Canyon, Sedona and hiking part of the Appalachian Trail to name a few! I would say that my story is far from being over and I’ll gladly take the title of “A Walking Miracle.”