May 28, 2016 - Overview of treatment plan and Round 1 side effects

I had my first round of Chemo treatments this week. The drugs that I am receiving are called Cisplatin and Etoposide. The treatments are on a 21 day cycle. On the first day of each cycle I will get blood work drawn and meet with my doctor to discuss any questions I have and make sure I am healthy enough to receive the treatment that week. As long as everything checks out, I receive both drugs that day. Cisplatin is a platinum based drug and has a lot of adverse potential side effects such as dehydration, kidney damage, permanent hearing loss, etc. Because of this, I get a bag of hydration fluids both before and after that drug is administered. The Cisplatin runs for half an hour and the Etoposide for an hour. Between the labs, meeting with the doctor, hydration, and chemo drugs day 1 is about 8 hours at the doctors office. Day 2 and 3 are much shorter, I only have to be at the office for about 2 hours. I get very little fluids and only have to get 1 hour of the Etoposide. Days 4-21 are just recovering from the side effects and trying to live my life as much as possible. As of right now, I will do 3 of these 21-day cycles then I will have new scans done to see if and how well the treatment is working.

In general the treatments will all be given in an IV in the port in my chest. However, I think I had an allergic reaction to the surgical glue, and the area was very inflamed this week. They gave me antibiotics and had to put an IV in my arm instead. Luckily the nurses here were much more skilled at finding my tiny rolling veins than all the ones I dealt with at Beaumont. My arms and hands are still bruised from the past couple weeks of IVs and blood draws.

So far the worst of the side effects has been fatigue. I spend a lot of my time sleeping, mostly on the couch since it takes a lot of energy to climb the stairs. I have also been having a lot of nausea, especially first thing when I wake up. I keep crackers nearby and luckily haven't vomited yet. I decided to take a medical leave from work, at least until I fully understand how I will react to treatments. We also decided to continue on with our wedding on July 2nd as planned. The timing of my treatments are such that the wedding would fall on day 20 of a cycle, and the doctor said that I should be feeling pretty good by that point.

More updates to come!

May 21, 2016 - The road to diagnosis and choosing a treatment

It was no secret, for most of 2016 I was feeling like absolute crap. I had little to no energy and I was suffering from severe stomach pains daily. I had been to my doctor who suggested everything from IBS to food allergies as the cause.

Finally, around the middle of April, I couldn't take it any longer and I asked Alan to take me to the ER at Beaumont. I ended up staying in the hospital for 3 days, where their diagnosis was diverticulitis with a treatment of heavy antibiotics. They also noted that they had seen "some little spots" on my liver in the CT scan and said that it was probably nothing, but I might want to get an outpatiemt MRI to see it in more detail. 

Around 3 weeks later, after fighting with my insurance company for authorization, I was finally able to get the MRI. The results showed something small on my pancreas that hadn't shown up on the CT, and also showed that what ever was on my liver had gotten bigger. I was told to come back for a biopsy. 

The week of the biopsy was agonizing for me, and I worked from home that week while awaiting the results. When the doctor finally called Friday afternoon with the results, I was in shock. The doctor said he couldn't really give me much information since he was not an oncologist, but the few buzzwords he did say were probably trending on google over the next few hours as I googled them in different combinations. He confirmed my availability to come back to the hospital and meet with an oncologist Monday morning, and I was left alone with my thoughts until Alan got home from work. 

Over the weekend we broke the news to our parents and siblings and did as much online research as possible. Monday I went to my appointment accompanied by Alan and both of our parents. There, we were told that Neuroendocrine Cancer is extremely rare, only accounting for about 1% of all pancreas tumors. My case was even more rare since my tumor was classified as high grade, small cell, and poorly differentiated. Essentially this translated to aggressive, fast growing, and inoperable. My disease was also classified as stage IV as it had metastasized to the lymph nodes near my liver. Their recommendation was to start on chemotherapy as soon as possible. They set me up with a series of appointments for the rest of the week, and scheduled my first chemo appointment one week out. 

The next day (Tuesday) I underwent surgery to install a medical port in the left side of my chest. The purpose of the port is to make it easier to draw blood or run an IV rather than poking my arms 20 times. I was also went for a brain MRI Wednesday and a full body PET scan Friday to look for any additional growth. 

Throughout all of this we continued to do our own research and found that there was one doctor designated as a NET specialist in the entire state. Luckily, we were able to get an appointment with Dr. Philip Philp at Karmanos for Friday, May 20 for a second opinion before starting chemo at Beaumont. After reviewing all of my medical records sent over from Beaumont he told us that he agreed with the diagnosis, but disagreed with the treatment. He said that the specific chemotherapy drugs that I was scheduled to receive the next week were for standard Pancreatic Cancer, and that they were not effective for NETs. I then had to make the decision between continuing with the original treatment plan laid out for me, or switch my medical care over to this new doctor. Karmanos was able to squeeze me into the schedule for the following week so that there would be no delay in starting treatment, and I cancelled all remaining appointments at Beaumont. 

May 13, 2016 - the day that changed our lives forever

On Friday. May 13, 2016 I received the news that would change my life forever. I had a biopsy sample taken from my liver earlier in the week, and the results were back. The tissue was identified as a Neuroendocrine Tumor (commonly referred to as NET), and it was cancerous. The tumor had originated in my pancreas (PNET) and metastasized to my liver and lymphnodes.

I have decided to start this blog to document my journey and easily share updates with friends and family.