Own Your Health–Guest Post by Jacque

 

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April 1, 2020. For me, a day I will never forget. At least for now, that date represents life before and after breast cancer.

The day before, I had minor, outpatient surgery to remove a lump in my left breast. Based on all medical assessments, this was no big deal. The surgeon was “99% confident” the lump was benign – a lipoma. Even after removing the lump, she reassured Sarah that it was just what she suspected – a fatty deposit. The next day, she called me. She said that the lab had already completed the pathology report and she was surprised by their 24-hour turnaround.

Then, she dropped a bombshell – “Jacque, I don’t have good news. The lump was cancer.”

I stood in my bedroom, the world spinning around me. My wife was somewhere else in the house and I felt suddenly very alone. She continued on: “I need to get you in for a breast MRI. It is absolutely the best tool we have to determine the extent of your cancer. The tricky part is that I need to send you for that somewhere between day 6 and 10 of your menstrual cycle. What day are you on now?” I remember every word. Yet, in the moment, I couldn’t quite process what she was saying. After regaining my wits, I was excited to tell her: “I’m on day 2!” It was a Wednesday. I would hit day 6 on Sunday. “Great! I can get you scheduled for Monday. Then, on Tuesday you’ll come see me and we’ll talk through all of this.”

My mind was racing: “Tuesday? It’s only Wednesday. How can I possibly wait that long?”

Sarah came into our room just as the phone call ended. I thanked the surgeon for calling me. For my personality, I wouldn’t want to wait. Had she called and said she needed to see me in her office, I would’ve known anyway. Then, I just blurted it out to Sarah: “It was cancer.” The expression on her face matched my own shock. “What? How could that be?”

I spent the next five days trying not to worry. I scoured the internet, starting with a Google search for “breast cancer.” As it turns out, there are several kinds of breast cancer. I had no idea what kind I had. From there, I searched: “breast cancer in younger women.” I am 36. The results were devastating. I learned that most women diagnosed with breast cancer in their 20s and 30s find the disease at a much later stage. I also learned that breast cancer in young women is usually more aggressive. The combination of the two makes for lower survival rates. It was like my world came crashing down. All of a sudden, I was desperate for more life. I pictured my children graduating from high school and college, future weddings, grand babies, so many career goals, growing old with Sarah… I wanted it all!

While I waited, I hit the ground. I prayed. I poured out my heart to God. I pleaded with Him to let me stay in this life for another 20, 30, 40 years. Let me be a grandmother! Let me fulfill my purpose on this earth! I have SOOO much left to do, Lord! I sang worship songs and (literally) counted my blessings. I cried, I told a few close friends, my parents, my in-laws, my military mentors, my squadron superintendents, and my sisters. And, I counted the hours until my Tuesday afternoon appointment with the surgeon.

Let’s back up.

Sometime in the fall, around October or November, I discovered a lump in my left breast. I had Sarah confirm that I wasn’t crazy. It didn’t hurt. You couldn’t tell it was there just by looking, but both she and I could definitely feel it. It was soft and moveable, about the size and shape of a lima bean. After a few

weeks, when it clearly wasn’t going away, I called and made an appointment with my primary care provider. They couldn’t get me in until early January, though. To be fair, I didn’t tell them about the lump when I made the appointment, I just told them I needed my annual exam (which was now a year late).

When I saw the Physician’s Assistant in January, she felt the lump and told me it was most likely a lipoma – a benign, fatty tumor. She said because I was so young and had zero risk factors for breast cancer, the odds were certainly in my favor. To be safe, though, she wanted me to go in for a mammogram and breast ultrasound. She promised to make the referral and asked me to wait a day or two before calling to schedule.

Two days later, I called to schedule the mammogram. The receptionist was a little annoyed when she told me that I’d have to reconnect with my provider, because they had ordered the “wrong kind” of mammogram. I wasn’t sure what that meant and asked if she could call instead. She told me “no” and said to call back once I had it sorted out. I took down notes on what to ask for with my provider and was back on the phone with the doctor’s office. After getting the “right” kind of mammogram scheduled, I had an appointment on the books for the end of January.

The Friday before my Monday mammogram, the clinic called to tell me I would need to reschedule because they’d accidently scheduled me for a routine screening when I actually needed a diagnostic version. I was out of town and without cell phone service, so by the time I got the message, it was the weekend. In their message, they said they had something open mid-February. Feeling a bit put out, I asked them to please find room on their schedule sooner than that. Caving to my pleas, they juggled their staff and scheduled me for the following Friday.

As it turns out, the mammogram and the ultrasound were both useless for me. My breast tissue is “too dense” for the mammogram to have shown anything. As the radiologist described: “It’s like trying to see through a snowstorm.” When they tried the ultrasound, the lump kept moving. To my great relief, since it meant I was not crazy, the radiologist and his staff could all feel the lump, they just couldn’t get a good image of it.

I left the appointment with a: “It’s probably nothing to be worried about, but we cannot say for sure” and a suggestion to follow up with a breast surgeon if I was really concerned. Once my provider got the inconclusive results of the mammogram and ultrasound, she did refer me to a breast surgeon in Cheyenne. The provider’s office told me that the surgeon’s office would call within a month. They gave me instructions to call back if I didn’t hear anything in 4-5 weeks “since the surgeon is very busy.” I was a bit annoyed, but thought: “Well, this really must not be a big deal or they’d be more urgent about it all.” Luckily, the surgeon’s office called the same day. She was able to get me in a few weeks later.

When I saw the surgeon, she re-iterated what I had already heard: “The mammogram doesn’t do us any good,” “It’s like trying to see through a brick wall,” and “I’m 99% sure this is not cancer.” She offered me two courses of action: 1. Remove the lump with surgery or, 2. Come back every three months for the next 2-3 years to monitor it with the understanding that if it grew it all, it would have to come out. The surgeon also explained that a needle biopsy wasn’t an option since they could not get an image of the lump with the ultrasound and she would have no good way of knowing if she actually hit it or not.

After talking it through with Sarah, I decided to have the lump removed. My logic was it meant fewer doctor’s visits and would give me the peace of mind to know it wasn’t anything to be worried about. I scheduled surgery for the end of March, following a nine-day field training for military duty.

Then, COVID.

About 10 days out from the surgery, the surgery center called to confirm that the pre-authorization from my insurance had come back and I was approved for the surgery. They explained that the day before surgery, I would get a second call with pre-operation instructions. The very next day, the surgeon’s office called to tell me that my surgery would be postponed until at least the middle of May. When I pressed them on it, they explained that their office was only performing surgeries for patients with a cancer diagnosis. To say that I was frustrated by this point is an understatement.

After dwelling on it for a day, I called the surgeon’s office. I asked them if the surgeon would reconsider. I told them that I didn’t have confirmed cancer, but that the point of the surgery was to perform a biopsy and I couldn’t know for sure until that was complete. The nurse agreed to take my case to the doctor. The day after, my surgery was back on her schedule under the warning that I “was putting myself at grave risk of contracting COVID.”

When the surgeon called to tell me the news on April 1st, she thanked me for advocating for myself. She said that she would’ve kicked herself if we had postponed the surgery only to later discover that it was cancer. I thanked her for hearing me out and letting me make my case. When I saw her on April 6th for my official diagnosis, the first thing she said was: “You were really worried!” I didn’t argue, but worried isn’t the right word for it. I did not have a “gut feeling” that I had cancer. I just knew that I wouldn’t be at peace with the lump until I knew for sure.

On April 6th, I was “officially” diagnosed with invasive ductal carcinoma – the most common form of breast cancer. The pathology report showed a mildly-aggressive form in the 1 centimeter tumor. The breast MRI did not indicate any other tumors and showed no additional spread (ie. to my lymph nodes). My cancer was staged as either 1 or 2, dependent on a biopsy of 2-5 nearby lymph nodes. (Stage 1 = no spread to the lymph nodes; Stage 2 = spread to the lymph nodes)

At that appointment, the surgeon offered two courses of treatment: 1. Another lumpectomy with sentinel lymph node removal and biopsy, or 2. A single-sided mastectomy with lymph node removal and biopsy. With the latter, I could skip radiation IF the lymph nodes were clear. If I chose a mastectomy, she would also need to know if I wanted reconstruction. She offered: “I’ll give you two a few minutes to talk through this” and she left the room. I was so relieved and overwhelmed the same time. I had walked into the appointment, prepared to hear the worst possible news. This felt like the best news in the world. Both of us were nearly in tears – elated at the promise of a long life ahead of us. Then, “Wait, did she just give me a few minutes to decide if I want to keep my boob or not?”

The surgeon came back in and asked if I knew what I wanted to do. I told her I was leaning towards the lumpectomy and rambled for a bit about wanting to wear a bikini. I was honest that I felt a bit rushed. She said she understood, but wanted to get the surgery scheduled in the next week. Either way, she needed to ensure she’d gotten all of the cancer and could not do that without additional surgery (she did not get “clean margins” in the first lumpectomy). She also explained that in her 20+ years treating breast cancer patients, she knew that most people have a gut feeling and that I should trust my gut.

We talked through the pros and cons of each option (and of doing nothing additional). When I couldn’t give a solid answer, she said: “I’ll tell you what. Think about it tonight and my staff will call you tomorrow.” Ha! I’ve had more time to consider a vehicle purchase. In the end, she was right. I knew what I wanted right away and I told her nurse the next day to schedule the lumpectomy. That meant radiation and so my next step was to meet with the radiation oncologist.

Before leaving the surgeon’s office that day, she gave me a breast cancer “textbook” and referred me to the Cancer Center at Cheyenne Regional Medical Center. I got to pick between two medical oncologists and was scheduled to meet with my pick the following week. The surgeon also explained that she would be on my treatment team for at least two years, but following the second surgery, my care would be transferred to the medical oncologist for 10 years of follow up care.

I had my second lumpectomy on April 15th. In preparation for this one, I visited the hospital to have four injections of a radioactive material straight into my breast, near my nipple. Over the next couple of hours, the substance would drain into my lymphatic system and the surgeon would be able to use a Geiger counter to locate the nearest (sentinel) lymph nodes. Surgery that day was delayed two hours. So much was riding on the lymph node biopsy, that it was hard to stay calm. Two days later, the surgeon called to tell me that the three lymph nodes she’d removed from my armpit were clear of cancer and I was officially stage 1. That has got to be among some of the best news I’ve heard in my life. Stage 1. High survival rates, maybe get to skip chemotherapy, easy-peasy in the world of cancers.

As you can probably imagine, there are so many other things I could tell you about this experience. For the sake of brevity (you’re probably laughing if you’ve made it this far), I’ve hit the high points. Here are my Top 8 Takeaways:

8. Women Rock. Nearly all of the medical professionals on my team (I’d say 80% at this point), have been women. They are smart, kind, caring, and interested in me. All I can say is, Thank God for Girl Power.

7. Don’t Lose Sight Of The Big Picture. If you work in the healthcare field or the customer service industry or no matter what you do – remember why you do it and the bigger impact. At this point, I’ve interacted with dozens of healthcare professionals. It is clear when someone is just “doing a job” and when someone is really caring for patients. Doing a job with kindness and true care doesn’t cost you anything extra. No matter what you do, do it with passion and compassion. After all, this could be the day someone learns they have cancer.

6. Don’t Skip Self-Breast Exams. Had I not felt this lump on my own, it could’ve been years before I was diagnosed and treated. I could’ve been one of the scary statistics. Know what “normal” feels like for you so, you can identify abnormal. Many friends have shared that their breasts feel so lumpy they wouldn’t know if something was unusual. That’s EXACTLY how I felt, too. But, I promise, this was clearly different.

5. Choose To Stay Positive. “A cheerful heart is good medicine, but a crushed spirit dries up the bones.” Proverbs 17:22

4. Take It One Step At A Time. Anything medical can be scary. Like any challenge, tackle it one appointment at a time and with your supporters there to help.

3. Doctors Are Not Gods. Don’t get me wrong here. Medical professionals are incredible people. Some of my favorite people (like my mom, sisters, and some friends) work in the healthcare industry. But, they cannot know it all. That is impossible. Do your own research. Ask questions. Don’t expect perfection, but insist on really great care.

2. You Have To Advocate For Yourself. You know your body better than anyone. Trust that and when you must, speak up and with confidence.

1. You Own Your Health. Think of it this way: you are the CEO of your health and your life. If you are wise, you hire really smart vice presidents to run various divisions. But, at the end of the day, you are responsible for the big picture. If you picked up on it, there were several points in this saga where I could’ve been discouraged and given up. No one would’ve followed up to make sure I saw this thing through. The buck stops here.

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