• Staci Gulbin, MS, MEd, RD

My health journey continued: The importance of patient advocacy

So, I know its been many months since my last post. When I stopped posting at first, I just started to feel uninspired. My health journey had come to a halt. Then as I started meeting with the pulmonologist in the fall, I got busy with pulmonary function testing PFT), an echocardiogram, and getting scans done.

These tests were done because I started feeling shortness of breath around August 2018. Results revealed that I had a low normal ejection fraction at 50-55% (normal range is around 50-70%) and low normal PFT scores, but the doctor wasn't concerned. Fast forward to January 2019, my shortness of breath wasn't getting any better and I was growing extremely fatigued all of the time. I emailed my pulmonologist and by a stroke of fate (as you will see in a bit), the doctor wasn't in that day.

Instead, my email was answered by the nurse practitioner on staff that day. I asked her if an abdomnial CT would be helpful to figure out what was going on with my breathing. Within hours, she ordered a STAT abdominal CT, chest CT, and pelvic CT. The results of these scans showed a small ovarian cyst and liver lesion. The doctor was not concerned with either, but the radiologist recommended a follow-up MRI to make sure the liver lesion wasn't serious.

Mid-February 2019, the MRI was done. The next day, I get a phone call from my primary care doctor. She has never called me at home, so I had a bad feeling in the pit of my stomach. She said that the liver lesion was likely what is called an hemangioma, or collection of blood cells, so there was no concern there. However, the radiologist found a "suspicious pancreas lesion." The doctor informed me that I would be getting phone calls from a surgeon and an oncologist within 24 hours to make appointments for consults. She said that the lesion may or may not be cancer, but that I would need to get tests done to figure this out.

I met with the surgeon and she explained the options for testing. They were going to try and biopsy the pancreas through a procedure called an endoscopic ultrasound (EUS). Then, they were going to try to biopsy the liver lesion to definitively figure out if it was serious or not. Then PET scans or more MRIs may be done.

Within a few weeks, I had the EUS done. The pancreas mass, as it was now being called, was 8mm X 8mm and was isolated on the tail of the pancreas. Unfortunately, because of how close it was to the stomach and other nearby organs, it was not safe to perform the biopsy, so no diagnosis could be done at this time. Then a few weeks after that, I had my liver biopsy scheduled. They were going to try and do a core biopsy guided by ultrasound. I had pumped myself up for this, went to the ambulatory care center, was prepped with an IV, and then taken into the procedure room. Once they did the ultrasound, they discovered that the lesion was too close to the lung to perform the biopsy safely. I was now 0 for 2.

The surgeon called me at home and said I had two options at this point. I could wait and have follow-up MRIs done in about a mhonth and see if the lesion and mass grow, or I could get a laparoscopic liver biopsy done to confirm diagnosis of the liver lesion which she said was likely benign, but had a small chance of being metastatic growth. I explained that I couldn't sit and worry for a month, so let's do the biopsy.

On May 6, 2019, I had my laparoscopic liver biopsy. It was a quick procedure once it was done, but waiting in the pre-op surgical center and having three different nurses try and get an IV in my reportedly "tiny veins" was trying. Little did I know that the nausea and pain I would feel after surgery would be wayyy worse. The first three days after were the worst, but I still felt a dull nausea and very little appetite with pain at my stitch sites (which were glued shut) for about a week.

I couldn't take the pain medicine prescribed (oxycodone) since I have a history of real bad nausea and vomiting with similar pain meds. So I was on ibuprofen as needed and the anesthesiologist placed a medicine patch behind my ear for nausea that lasted three days. Once the pain subsided, I had my follow-up appointment and received the good news that the liver lesion was in fact an hemangioma.

The surgeon said that now it was "watch and wait" with an MRI in three weeks to see if the lesion or mass grew. She was pretty sure it was a neuroendocrine tumor, but they weren't sure if it was benign vs. malignant or functioning vs. non-functioning. This suspicion was likely due to the liver lesion not being malignant and the previous labs showing an elevated serotonin, which was typically found in neuroendocrine tumors. The tumor marker labs that were done had showed no elevations, but through my own research, I learned that such labs only usually are high in advanced cancer states.

I agreed with this plan during the follow-up appointment, but as I drove home I started having second thoughts. The surgeon said that the mass on my pancreas was too small right now to justify surgery since the risks of surgery would outweigh the benefits. However, due to my increasing anxiety, I didn't want to wait. So after talking with my mom and husband, I decided to email my endocrinologist from Maryland who I hadn't talked to in over six months, as well as my primary care physician. I asked, and sort of pleaded with them, to order a PET scan for me so I could know what this tumor was on my pancreas.

I also emailed Johns Hopkins Hospital, which is close to my parent's home, to request an appointment. They are #2 in the country for endocrinology, and have made great strides on pancreas tumor research, so I want to go there to have my case reviewed and eventually to get this tumor removed. The surgeons in Colorado have been great, but I want to be close to my parents when I get this surgery so I can recover with loved ones surrounding me and able to help me. I don't want to put all that burden on my husband.

We'll make a road trip out of it and drive to Maryland, with a stop in Nashville on the way to see my sister and her new baby and my puppy's fur cousins.

I haven't heard back from any doctors yet, but I'm waiting patiently. I had a meltdown a few days ago and cried, got angry, said some things to loved ones that I regretted after they left my mouth. However, I realized that this was coming from a place of anger. Anger that just when life was getting good with my marriage, my new career as a freelance writer, and with me new puppy, that this tumor shows up.

I feel like the past two years, everyone around me is losing weight, getting off their medications, having babies, and enjoying life. Meanwhile, my health has been going downhill with no uphill in sight. But once the tears had dried, I had an aha moment. I knew now that whatever this was that I was dealing with that I needed now more than ever to get my head in the right place and start connecting with my friends and loved ones more since I will need the strength and support of my own well-being as well as that of others around me as I go down this health journey road.

Now that answers are starting to reveal themselves and I feel inspired to share this journey, there will mor

e updates as the weeks go by. Here's to positive vibes and answers in the coming weeks.

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