It has been a really long time since I updated this blog. I think about it often, but medically speaking nothing has changed in 10 months, so I haven't had the motovation to write.
As anyone who follows me on Facebook knows, today, November 10 is Neuroendocrine Cancer Awareness Day. My friend, and a huge NET/NEC Awareness Advocate, Susan started an awareness campaign leading up to November 10, and is challenging someone new each day to share their story, from early symptoms to diagnosis, treatments, and current updates. I was nominated as part of Day 2, and thought my blog was a great way to do this.
(Sorry Susan tjat it took me 5 days to write this!)
First things first, if you're new here you may be wondering what the heck does neuroendocrine cancer mean. What is NET and NEC? Even if you've read my blog before, I fear there may have been some misinformation back then, as I was so new to all of this and didn't quite know all the right terms.
Neuroendocrine Cancer is different from other types of cancer because it is not named by body part. Neuroendocrine Tumors (NETs) can originate from many places in the body, usually hormone producing organs. The primary tumors are frequently found in places like the intestines, the lungs, the pancreas. Some people don't even know what body part it originated from. But regardless of where the tumors are at, it is called Neuroendocrine Cancer. Tumors can also be low, intermediate, or high grade based how aggressive they are. This is measured by something called a KI67. Anything greater than 20% is considered high grade, also refdered to as Neuroendocrine Carcinoma (NEC).
There are many more nuances to the overall dianosis, such as staging, grading, small/large cell, and poor/well differentiated that I won't get into here in the interest of time, space, and the risk of being medically inaccurate. For more information on Neuroendocrine Cancer please visit:
The Healing NET:
https://www.thehealingnet.org
Neuroendocrine Cancer Awareness Network:
http://www.earnyourzebrastripes.org
Now, for my story.
In the fall of 2015 I started having weird episodes where my face would get numb and tingly and then i would get a bad stomach ache with diarrhea. In mid-January of 2016 I had one of these reactions, but it was much more severe than any previous one. I had been working late and the episode occured after eating a peanut butter cookie. It was so bad that a coworker had to drive me home. From this point forward, i had a pain in my left side that just didnt go away, no maater what i did. Every day I would have symptoms ranging from mild nausea and discomfort to severe stabbing pains.
After about 2 weeks of this I finally gave in and called my doctor. It was a local private practice in Royal Oak that I chose for proximity, and I really had only been to see the guy maybe twice for a sinus infection in the past year.
On the first visit he seemed super unconcerned about the occasional episodes of face numbness and told me I had IBS and just needed to drink more water, eat more fiber, and move more. I started making a conscious effort to take a lap around the office every so often when refilling my water, and i started eating more fruit and taking fiber supplements. At the end of 2 weeks I was doing much worse.
At this point the doctor started to take the face tingling reactions more serious and suggested I could ne developing an allergy. I was starting to come to this conclusion on my own and had identified peanuts as a potential trigger. My doctor on the other hand seemed to think dairy and gluten. So imstead of sending me for an allergy panel, i was sent home to do a 3 week gluten and dairy free trial.
I asked the doctor what I was supposed to eat (gluten and dairy are in EVERYTHING!) he promised to send me over some information. Instead, he sent me information on a costly weight loss program he runs at his office. I felt like he was essentially saying to me "lose weight and you'll be fine" and so I never went back to see him after that. I did attempt to avoid dairy and gluten for about 2 weeks and I continued to get sicker. At this point I scheduled an appointment with an allergist and was tested for over 50 food allergies, all of which were negative.
It was now late march of 2016. I was doing awful. I was in pain every day and barely had an appetite. I had fired my primary care doctor and tested negative for food allergies. I had my annual physical coming up in about a month (we get an "executive health exam" through work every year through a specific provider), so my plan was to basically try to tough it out until then to see if the doctor there had any ideas or suggestions on a new doctor for me to see.
In early April, though, I ended up in the ER. I was having one of the face tingle episodes along with heart palpitations and shortness of breath. I told Alan that I was afraid that if I went to bed I wouldn't wake up.
Once at the Beaumont Royal Oak ER I was worried they were going to give me pain meds and send me home. So, I refused their morphine drip even though my pain was at about a 12/10. I said I don't want you to make the pain go away right now. I want you to figure out what's wrong and fix it!
They did some standard work up and decided that I should have an abdominal scan. I had a CT and they said that it showed a blockage in my colon as well as some "lesions" on my liver. They kept mentioning how "young" I was, as if it were some miracle protection against any serious disease. They decided I should be admitted for some further testing and started me on IV antibiotics because they suspected diverticulitis. I had a colonoscopy while admitted and they biopsoed some tissue but found everything normal. They said the colonoscopy confirmed the diverticulitis. They never directly addressed the lesions on my liver. They said it was probably just fatty liver, normal, im so young no real reason for concern. But they wrote me a prescription to go get an outpatient MRI "if i wanted to" to get a better look and confirm and sent me home with more antibiotics and some medication for acid reflux.
Getting the MRI was a challenge. My first appointment got cancelled due to insurance denying pre-authorization. Also, I was feeling much better now. As far as I could tell the antibiotics had cured everything. So I almost didn't fight them on it. But then a couple days later i woke up in pain again, so I did.
Finally I got approved and went for the MRI. This was around the first week of May. Two days later the doctor I had seen in the hospital called me. The spots on my liver were bigger now, compared to just 3 weeks ago in the ER. They could also see a mass on my pancreas that wasnt visible on the CT. He wanted me to come in for a biopsy as soon as possible. At this point, i should have known that it was definitely cancer. But instead I allowed myself to live in denial for another week.
I had an ultrasound guided biopsy, where they use an ultrasound to find the spots on the liver then use a needle to pull out some samples. I had this done on a Monday or Tuesday and waited anxuously for the results all week. Friday morning the doctor called and said the final results were still pending, but he wanted to set me up with a consultation with a liver surgeon for Monday. Finally, around 3pm on Friday, May 13, 2016 the doctor called and told me the results. The biopsy showed that the spots on my liver were malignant. They were poorly differentiated, small cell, neuroendocrine tumors, they think it started on the pancreas. They call it pNET he said, but don't google it over the weekend.
After a difficult weekend of breaking the news to our families, on Monday morning we headed off to Beaumont to meet with the liver surgeon. He essentially says right away that there is nothing be can do for me, because my tumor is something they call "high grade" and this means it cant be operated on. No real explanation of what that meant or why. But he had gotten me an appointment right away with an oncologist and walked me over to her office.
The oncologist was nice enough but she seemed terrified of me. I felt like she was going to start crying, she barely made eye contact. I won't even repeat some of the things she told me about my disease, because I have since found out they werent true. She set me up with appointments for the rest of the week: a port in my chest, a brain mri, a pet scan. And I was to start chemo the following monday. I dont even remember what kind, because it was the wrong kind. She was setting me up to receive the drugs for pancreatic cancer.
Luckily, we ignored some of the doctor's advice and started googling neuroendocrine, nets, pnet, etc right away. We stumbled across the NCAN website which listed Dr Philip at Karmanos as the only specilist in Michigan. Luckily, he was able to see me that first week before chemo. The first thing he told me when he walked in the room was "i reviewed your files. These are not the right drugs" he told me that the standard protocol for someone with high grade neuroendocrine cancer was Cisplatin and Etoposide, and that if I wanted to be treated there, they could still fit me in on Monday morning. I would receive both drugs, plus a large amount of hydration fluids over about an 8 hr period on the first day, then just the Etoposide and a little hydration over about 2 hours on the next 2 days. Then we would repeat this every 3 weeks for 3 cycles, before another scan.
When I first started chemo, the side effects were mild. The first week would be really bad but then I would feel better than I had in almost a year for almost 2 weeks before going back. Towards the end of July, I had my first follow up scan. It showed about 50-75% shrinkage of most tumors. My doctor recommended 3 more cycles before another scan.
During these next cycles we did more research. We found out about a patient conference in New Orleans and that one of the top neuroendocrine clinics in the country was also located there. We were able to get an appointment there for the week before the conference, and also got a travel grant for the conference itself. The timing was lined up so that this was all around the time i would have finished my 6th round of chemo and had my second scan, at the end of September 2016.
Unfortunately, the chemo really started to take its toll during rounds 4 and 5. I had developed severe ringing in my ears and some hearing loss. And by the time I went in to receive round 6, i could still barely get out of bed. At that point my doctor decided to delay my next treatment by 2 weeks, which also allowed me to recover more and feel better for new orleans.
In new orleans i received something called an O scan (now an outdated technology) to see if i had receptors that could open the door to additional treatments. I didn't have them. The doctor in New Orleans essentially agreed with my existing treatment plan, with the exception that I should switch to Carboolatin (a slightly less toxic platinum based chemo therapy than cisplatin) for round 6 and forward.
When I got home from New Orleans, I started the carboplatin. I also received hearing aids to help with my hearing loss (spoiler alert: they didn't solve my problems with distinguishing sounds) after the first round of carboplatin I had my scan and it showed a few small reductions in tumor size, but the difference was nothing compared to the results after the first 3 rounds. My doctor decided again on 3 more cycles and a scan.
After the next cycle (7th overall, 2nd after carboplatin switch), I ended up in the emergency room. All of my blood counts were extremely low, and I ended up getting a transfusion. After this, my doctor decided to reduce my dosage by 25% for future cycles and also move my next scan up by one cycle.
So after Round 8 (Round 3 of Carboplatin) I had another scan. This one showed even less shrinkage than the previous scan, but shrinkage nonetheless, and no growth. After 2 more rounds and another scan, near the end of January 2017 my doctor said that the tumors were "stable". This means that they didn't grow but they also didnt shrink. At this point he recommended that I stop chemotherapy for 2 months and see what happens.
This began a terrifying time for me. Even more terrifying than being told that I had cancer, was the suggestion that I should do nothing about it.
During this 2 month break I also traveled to New Orleans again to see what the doctor there thought. They agreed at that time that there was no way to know if the chemo was actually keeping the tumors stable, or if they just were stable on their own. Stopping the chemo was the only way to know.
So I had my 2 month scan in March, and another 2 month scan in May. They were both stable. At this point, I decided to seek an appointment with THE top NETS doctor in the country, Dr. Liu in Denver. It takes a while to gather and send all of your information and get an appointment, but finally I got one for mid-September 2017.
Just before I went to Denver I had another scan. At my appointment, my doctor told me all was stable and we scheduled the next scan for December. Then I get the written report. It mentions a small lesion on the lower left lobe of my lung. I talked to Dr. Liu about this in Dever. He said with it being so small (he couldn't even find it when he pulled up the scan images) that it could be anything. It could be a tumor but it also could be inflamation. The only way to know for sure was to wait and see if it grows on the next scan. Dr. Liu's only recommendation was to switch to PET scans from CT going forward.
So here we are. It is November 10, 2017. It is NET Awareness Day. In 3 days it will be 18 months since I received my diagnosis. To the outside world, it seems like everything is back to "normal". But life is far from normal. I live with the consequences of this disease every day.
The lasting effects of chemo are nothing to be taken lightly. I still experience extreme fatigue. Some days are better than others and some days it hits me like a semi truck. If you see me out doing something "fun" chances are i stayed in bed most of the day before and will stay in bed the day after.
The brain fog is difficult to deal with too. As if I didn't have issues with concentarion and memory before, this is only exacerbated now. Prior to cancer and treatment, for all my scatterbrainedness, I could at least say I was smart. I could at least say that I learn new things quickly and excel in them. But now, I don't. It has made life, and especially my job, very difficult.
Then there is the paranoia that comes with pain. Over the summer I had a headache for about 48 days straight. I think I called my oncologist at least 12 times convinced I now had a brain tumor. We did a head MRI, I didn't. Or the days i get sharp, stabbing pains in my stomach or in the spots where I know my liver or my pancreas are at. Pains that make me feel like i am re-living the spring of 2016. Are those my tumors, taking this time between scans to grow and spread? What about the sharp pains in my chest that I get almost daily, that my doctor says is costochondritis (inflamation). Is it? Or was that teeny tiny spot on my last scan a tumor? Is it there? Is it growing? I guess we wait and see.
So that's my story. If you took the time to read it, thank you. Please spread the word and help to raise awareness for Neuroendocrine Cancer.
