"Being a patient advocate, to me, is something I just am."
June 2019 Update
I’ve been able to access disability benefits, both private and through Social Security. I also started a blog, No Half Measures (http://nohalfmeasures.blog), I’m working with various metastatic breast cancer groups, METup.org and Metavivor.org and Living Beyond Breast Cancer. Being a patient advocate, to me, is something I just am. I advocate every day, in every way I can, to raise awareness about metastatic breast cancer and the urgent need to fund research.
September 2018 Story
In January of 2017, at the ripe old age of 38, I felt a lump in my left breast. I was tandem nursing my almost 4 year old and almost 2 year old at the time. I started taking herbs and saw my lactation consultant since I’d already had a few clogs. I always had an overabundance of breast milk, so much so that I donated over 25,000 ounces to a milk sharing group during my 4 years of nursing and pumping. Anyway, my lactation consultant thought it was nothing but since the herbs weren’t working, she wanted me to see my PCP.
My PCP is super chill and tandem nursed her kiddos, so she was not too concerned. Her comment was that she was 95% sure that it was nothing but since my mom was then a 14 year breast cancer survivor and I’d never had a mammogram, she sent me for a mammogram and a diagnostic ultrasound. Since we were expecting some difficulty with my dense and milk filled gigantic breasts (seriously, I went from barely a B to at least a DD while nursing and I’m 5’2”), she told me not to let the radiologist do a biopsy if there was any suspicion but to call her for a referral to a specialist.
I didn’t know what to expect at the mammogram appointment but I certainly did not except to drench the machine in milk. Also, it HURT!!! The tech wasn’t very happy about milk everywhere but seriously, that crazy machine HURT!! I pumped before the scan and pumped again during a break and we got some pictures. Tech didn’t have a poker face, so I knew something was up. After the diagnostic ultrasound, the radiologist came in and wanted to do a biopsy right then. Since my PCP had already told me to call her after the mammogram, I explained that and they freaked. I was taken to three different people, including a social worker before they finally let me leave AMA. It was after office hours at this point and I left a message with my PCP’s answering service on the way home. It was a Thursday. She called me back that Friday morning after having looked at the scans and the report.
I think the only explanation at this point for the fact that I was not freaking out was that I was in denial. I was convinced that everything was fine and went to the appointment with the surgeon the following Monday without trepidation. In hindsight that was pretty naive but I am thankful for a few more months without the weight of cancer in my life.
The surgeon did the biopsy in her office that day, also not what I was expecting and we left with some amount of concern to wait for the results. I leaked milk from the biopsied area (at around 10 o’clock right outside the aureola on my left breast) for about a week and my kiddos thought that was pretty funny. The crazy bruising wasn’t as funny and the anxiety even less.
On March 8, 2017, we got the results of the biopsies. The suspicious lymph nodes were just full of milk but the lump in my left breast was breast cancer. Invasive Ductal Carcinoma which was ER/PR+ and HER2-. I later found out I am BRCA- but then so was my mother. At that point, we met with a medical oncologist and a radiation oncologist and started the process of drying up my milk. It was tremendously difficult and abruptly weaning both Boys was just plain awful. I felt like I was walking around with a bomb inside me. I was limping at this point, favoring my right leg — I’m not a complainer and I simply didn’t bring It up. In hindsight, that wasn’t the smartest move.
We decided to do a lumpectomy and my surgery was on April 11, 2017. The surgeon was able to get clear margins and I was considered node negative since only one of the 4 sentinel nodes had some trace cancer cells. Trace cancer cells means less than 200. We hoped I would just need radiation and again waited for the oncotype results. Still naively hoping we were in the clear. Original staging was 2b.
Oncotype score came back in the high side of the gray range and so we had to adjust our thinking to include chemo. Original plan was 4 rounds of AC and then 12 of Taxol.
I started chemo and in the haze of the day after the first chemo treatment nicknamed the “red devil,” my medical oncologist called to say that something was wrong with my bloodwork (he didn’t say tumor markers then) and we’d need to do more tests. Still naive, I didn’t get upset or exercised and I went in for a bone scan and CT scans within a few days. Took nearly a whole day and when we got the call the next morning that we needed to come in, didn’t matter what time, just come, and a sense of doom began to settle over us. The weight of all that was and all that might be was stifling.
The next day, June 22, 2017, we went to my medical oncologist’s office to find out that the cancer had spread, not through my lymph nodes, but through my blood to take up residence in all of my bones. That limp I mentioned earlier, turns out I had a 5 cm tumor in the middle of my right femur. My organs were and are clear of mets so far. My husband had insisted on coming to my appointment and we both cried and cried and cried. Life as we knew it had already shifted and now it had taken a dark turn.
About a week later, on June 30th after having multiple MRIs and skeletal studies, an Orthopaedic surgeon put a titanium rod inside each femur secured by 4 screws each. We also did some additional genetic testing and found out that I’m positive for the ATM mutation.
I kept going with AC but we decided to leave Taxol for later. I did 10 days of radiation on my legs and my back (big lesion at L2) in July as soon as I was healed enough from the surgery. I had a full hysterectomy on September 18, 2017 and I started Ibrance and Letrozole in August, 2017.
For now, all of my mets have shrunk and I’m getting more and more limber each day. I’ve added yoga to my routine, which is really helping with flexibility. In October 2017, we finished closing up my office and moved to Miami to live with my parents for the help and support. I’ve been able to access disability benefits and I’m trying to figure out what’s next. Becoming educated and keeping up on research as much as possible has become a little like a full time job!
I’ve added acupuncture, chiropractic, supplements, diet changes and medical marijuana to my regimen. I like to say that we’re combining the best of Eastern and Western medicine the best we can.
Recently, I’ve developed heterotopic ossification in each thigh, which basically means that I have bone growing inside each of my thigh muscles. None of the bone pain I’ve been managing prepares me for this much pain. We’re working on building muscle to cushion the growing bone and there may be more surgery in my future, once the ossifications stop growing.
My very first thought in June when we got the news was that I wanted to spend as much time as possible with my children. That’s what I’m doing. I’m spending time with my family and creating a new life and memories for as long as we have. Our focus is living in the present and working to maximize the joy of the time we have. I’ve got boxes started for both Boys and I’ve been working on letters and cards and mementos. I worked with a non profit recently called Thru My Eyes to create a video for my children to watch after I’m gone. I’ve also started a box for my husband to stash important reminders and letters.
Thinking about leaving my kids sometimes leaves me paralyzed but it also clarifies things. While I’m still able, I get out of bed each day and spend as much time as I can with them. When I can’t get out of bed because of all the side effects I deal with daily, we get lots of snuggles and cuddles. This is our life now, in all it’s beautiful mess.
August 2018 Story
I’m 38, a wife, a mother, a daughter, a sister. I’m a lawyer and worked hard all my life to be successful. Yes, I certainly didn’t always take the best care of myself but I was generally very heathy. I was even more focused on my health during my pregnancies and then while breastfeeding.
I was tandem nursing my two boys (4 and 2) when I felt a lump in my left breast in January of 2017. I thought it was a clog, my IBCLC thought it was a clog and so did my PCP. My PCP is very breastfeeding friendly but she felt it warranted my first mammogram even though she said she was 95% sure it was nothing. I’m so thankful she did.
After the biopsy came back, I had to abruptly wean my boys and became a professional patient. The amount of doctors and appointments and treatment is overwhelming. I joined several Facebook support groups and read everything I could find. My husband and I felt like we had taken a crash course in another language and culture.
First survey was April 11th. I was already limping at this point but we didn’t see any evidence (and neither did the doctors) that my cancer had spread beyond my breast. So, lumpectomy, node negative, clean margins and we thought life would get back to “normal”. Chemo was a possibility but didn’t seem likely.
Testing on the tumor that was removed came back in the moderate risk category for reoccurrence and so we elected to include chemo in my treatment. After my first chemo treatment my doctor called me over the weekend to say that something came back concerning and I needed more tests.
June 22nd we learned that my cancer had spread through my blood and into my bones. I was limping because I had a 5 cm tumor in my right femur.
I’ve had titanium rods inserted in both femurs, a complete hysterectomy (Ovaries, uterus, tubes, all my lady parts were removed), I’ve lost my hair, I’m in menopause at the age of 38, I’ve scars all over my body and I regularly have intense pain that prevents me from various “normal” functions. I’ve been restricted from lifting my precious boys for months. I’ve had to close my Law practice and learn about disability options.
I don’t recognize my life.
Over the last few months I’ve had a variety of emotions. I’ve been told some of the most amazing things and found a support system that I never knew could exist. Total strangers get me in a way I could never have imagined. I’ve grown closer to my family, especially my mom who is a breast cancer survivor herself. I’ve been told some awful things, people around me have been horribly insensitive, I’ve experienced betrayal and malice from the most unexpected places.
I don’t recognize the people around me.
Outside of my amazingly supportive husband, precious children and my family, the only relationship I still recognize is with God. I don’t know how I could accommodate the affect of a terminal diagnosis outside of my certainty that God has a plan for me and my children. I don’t want them to grow up without me. Any time I start to fret about what that looks like, I can’t breathe.
At the end of the day, I’ve had to relinquish my Type A tendencies to control the trajectory of life and take each day much more slowly. To be present now in the lives of my boys. To cherish my husband and family. I don’t know what the future holds or how long my current medication will work, but that’s not something I can do anything about so I put it out of my mind as much as possible. I have, of course, updated my will and trust and am almost finished planning my funeral and end of life arrangements… I did say I have type A tendencies, right?
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