Queen of the obscure?

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One year ago I would have never imagined this would be my life. I was always healthy. Even as I watched my mother and father deal with medical issues, diabetes, high blood pressure, high cholesterol, and thyroid problems.

But that was never me. While I always battled weight issues, my health was always pretty good. I was never sick often and when I was, it was only minor things like a brief cold or fever or stomach bug. My health was always something I could count on.

Until September 25th.

That’s the day things changed. I went from healthy to feeling like my body is betraying me. First the tumor. Then the mets slowly eating my bones. It’s taken time, but slowly I was learning to live with that. I felt as though day by day I was reclaiming my life.

Then early Saturday happened. I chatted with a friend on the phone and the whole time I felt as though my stomach was jumping out of my body. I got off the phone and crawled up the stairs to bed. I took some pain and nausea medication then tried to sleep. Instead of improving, the pain became worse so I got into the shower and ran the hottest water over my stomach. It had helped in the past when I had gallbladder issues which was what I began to think was wrong with me.

When that didn’t work I climbed back into bed and cuddled up with my heating pad. After only a few more minutes the nausea hit and I couldn’t stop throwing up. I had to face the reality that whatever was going on wasn’t going to get better and I needed to go to the hospital.

I was in tears by the time I made it to the emergency room, barely able to speak enough to tell them my name or birthdate. Thank god for IV Morphine. At least I was able to find enough relief that I could tolerate tests. The verdict after labs and a CT scan of my abdomen?

Acute Pancreatitis. Where the hell did that even come from?

A two day hospital stay later and they couldn’t tell me why. I had none of the risk factors and my medications do not list acute pancreatitis as a side effect. My final diagnosis? Acute idiopathic pancreatitis. This only occurs in only 10-40% of patients. I am one of them.

Apparently I am becoming the queen of idiopathic. The obscure. The rare.

About 2–10% of normal healthy individuals do not develop an immunity from routine vaccines. I am considered a non-converter to the MMR vaccine after having been given the series four times with no success. Only 2-10%. I am one of them.

Only about 1-2% of people who get immunized for the flu shot will develop a fever as a side effect. I develop full on flu symptoms and have been recommended to use an alternative formulation. Only 1-2%. I am one of them.

And only 6-10% of new breast cancer diagnoses are initially found once they have become stage IV, sometimes called ‘de novo’ metastatic breast cancer (from the beginning). Only 6-10%. And I am one of them.

Forty eight hours later I am out of the hospital, but I still don’t know what caused my pancreas to play tricks on me. This leads to another fear. If I don’t know what caused it, how can I keep it from happening again? Research shows that it is important to find the cause because if it’s not found there is a high chance of recurrence.

First the ticking bomb of metastatic breast cancer. Now pancreatitis. It’s almost more than I can handle. I’m beyond over the ‘new normal’ my life has become. I would give up everything I own just to go back to the ‘old normal.’ To have just a little more time with the me I used to be.

Is that asking too much? Probably so.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
CA 27.29 2/7/2019 55 (goal <38)
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Advocate for life

We need a cure

In the months since my diagnosis I have found solace in groups with people fighting the same brutal disease. There is a bond you develop as you fight this demon together. Nothing hurts more than seeing the post that says ‘Jane passed away last night,’ or ‘I read in another group that Jillian died yesterday.’

I feel so incredibly blessed to be in as good health as I am today. To look back at how far I have come, it is genuinely a miracle. As good as I feel, there is a sense of survivor’s guilt every time I read that someone else has lost their fight. My heart hurts whenever I lose someone I have grown to know.

Each day I feel a deeper desire to advocate for others fighting metastatic breast cancer, those who have become so sick they can’t fight themselves. I feel like I have a purpose, even if that purpose is to bring attention to what metastatic breast cancer really is. As a nurse one of my responsibilities is to educate my patients. As a metastatic breast cancer thriver I feel one of my responsibilities is to help educate people about a little known disease.

Metastatic breast cancer is treatable but not curable. It strikes anyone, whether an early stage breast cancer survivor or someone who has never previously had breast cancer at all. Stage IV breast cancer sucks.

Knowledge is power. Take the time to learn about the MBC thrivers. We matter too!


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)

A Family Affair

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Cancer doesn’t just affect the person battling the disease. It affects everyone they love too. The doubt, the confusion, and the fear of what the future holds.

The first time I watched Deadpool was a few months before I was diagnosed with cancer. I chuckled because it was funny. Who doesn’t laugh when he makes fun of David Beckham’s voice or says that his off switch is right next to his prostate while pondering that it might be his on switch?

In the months since my diagnosis, I realize there are some very insightful statements about cancer buried inside the humor. Before becoming Deadpool, Wade Wilson says to his love Vanessa,

Listen, we both know that cancer is a shit-show. Like a Yakov Smirnoff opening for the Spin Doctors at the Iowa State Fair shit-show. And under no circumstances will I take you to that show. I want you to remember me, not the ghost of Christmas me.

When he said ‘The worst part about cancer isn’t what it does to you, but what it does to the people you love,’ I actually began tearing up. I realized he was right.

During these first uncertain months, I have watched how it has affected those I love. When my doctor broke the news to me in the emergency room, my middle daughter had this look on her face that broke my heart. And while my son tried to act tough, I could tell he was scared.

Those first early days were filled with so many unanswered questions. What kind of cancer did I have? Will I need chemotherapy or radiation? Will the pain I’m in improve? Does this mean I am going to die soon?

Cancer doesn’t just impact the person the person that was diagnosed. Cancer is a family affair. It is painful to watch the fear in the eyes of those you love. Sometimes that hurts more than any of the treatments and blood draws. The last thing you want is to see your family suffer and the only thing you want it to make everything better for them. When you are battling cancer sometimes there is nothing you can do to make it easier for them because you are powerless to just ‘get better.’

Remember the silent victims of cancer. Don’t forget the pain they are going through as they watch the one they love fight the battle of their life. Cancer is cruel and doesn’t discriminate. It doesn’t care who it hurts. Sometimes it is harder to watch someone you love in pain than to fight the disease that could ultimately kill you.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)