Queen of the obscure?


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 not one, but two immunizations, both the MMR and HepB vaccines after having been given both series multiple 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 2, 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)

6 thoughts on “Queen of the obscure?

    • Thanks Connie. I’m better. I was just having a pity party moment. I try hard not to do that but a hospital stay can screw with your resolve. A ‘do over’ button would be great, but like my best friend told me last night, you just have to make the best of whatever time is left, no matter how long or short that is. I got a long lecture on looking up statistics and was reminded I’m more than any statistic. To stop being the nurse and start being the patient. Sometimes we need someone to slap a little happiness into us. 🤣

      • One of the hardest things for me around this whole METS thing is not knowing how long I’m going to be here, that’s why I look up the stats. I want to beat them! I’ve also found that the pity parties, even tho they are rare, are necessary for me. That way I get rid of all the “bad” stuff and can focus on the here and now and the “good” stuff that my life has. You are right too, having a friend to slap us upside the head also helps 😀

    • Thanks. Today was a better day. Two days in the hospital just took the wind from my sails. Now that I’m feeling more myself I’m trying to keep going one foot at a time. The sun will come up tomorrow and that’s a gift in itself. 🌞

  1. Sending lots of good vibes your way. The only advice I have is to stay positive, eat a healthy diet and be active. I am stage IV with mets to both lungs and a few bone areas. Ibrance and Letrozole have been wonderful so far with no side effects. March 2019 will be cycle 34 and as of last scan, two of the lung nodules were no longer present. Repeat scans in March.

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