We set the date, the surgery will happen on September 26th. Have to get to Houston on Thursday the 22nd, there are pre op scans and meetings on the 23rd. then I guess we get to hang out in Houston for the weekend. I thought by setting the date, it would feel more real but it doesn’t. Still feel great, still have stuff to do, just a date on the calendar.
To all who’s interested:
I am starting this blog to keep family and friends updated on my status. It’s been a whirlwind of a year and I am astounded by the love and support my family and I have received. I know it can be a tough thing knowing when to ask and how much to ask but everyone who cares wants to know what’s going on and what the next steps are. I don’t mind talking about it at all, sometimes feels therapeutic for me, maybe that’s why I even started this bog. If the road gets tougher, it may get harder to talk about but right now I want you to know as much as you want to know. Please feel free to send the link to the blog to anyone you might think is interested.
I will update this blog as we get info and more as we get closer to the actual surgery. I will also try to use twitter to update my statuses so if you want to follow me I am @jpkearns99
If you are reading this, you probably already know a lot about me so I will keep it short. I am a 42 year old, healthy male. I married to the most beautiful and amazing woman in the world, we have four wonderful children and the best set of friends any person could ask for. I like to think of myself as successful, I have a great career and do what I love. In a word, I am BLESSED. Things have always gone my way, don’t get me wrong I have worked my ass off and have made the right decisions but I have had opportunities presented to me that most people don’t get. I am firm believer in, if you make the right choices and do right by other people, good things will happen to you. I would like to think that’s the way I have lived my life.
You might be thinking, if I am BLESSED then why I am writing a blog that updates you about my health. That’s a good question and right now I don’t have that answer but I have to believe there is a reason for it and in the end, everything will work out the way it’s supposed to…
I have never smoked, used tobacco or any recreational drugs. I do like throw back a few drinks when in a social environment and I have never been one to be anti-social J
How this started:
In early June 2015 I was coming back from a business conference and had some abdominal pain, over the next couple of days it got worse. I ended up going to the ER, they performed a CT scan and a MRI that led to a diagnosis of a cyst on my pancreas. At the time I didn’t even really know what the pancreas did or if it was important (I am now fully aware of how important it is), the Dr told me that pancreatic cysts can be caused by “excessive alcohol consumption”. That made some sense to me, I had come off Memorial weekend in Mexico and went into my conference a few days later, both were very “social” events. In a 12 day period, nine of those days had been very festive. They sent me home with some pain pills, a referral to see a surgeon and I was on my merry way.
A few days later I went to see the surgeon, he read the radiologist reports and noted a pretty big difference- the CT stated it was a cyst, the MRI said it was a mass. At the time I didn’t know what the big deal was but I wasn’t having any more pain or other symptoms and my lab results all came back normal so we took a 2 month wait and see approach. During that time I started using my contacts finding the best pancreas guy in Tucson, which everyone said was Dr Cunningham at UMC. I worked to get an appointment with him in early August. Not an easy task but got it done.
When I had my appointment in early August he looked at scans and was pretty certain it wasn’t a cyst. He recommended doing an Endoscopy ultrasound (EUS), we booked it then. On Aug 11th I had the EUS, he also took a biopsy. When I woke up from the EUS, he told me he believed I had a neuroendocrine tumor (NET) and didn’t believe it was malignant yet but needed the biopsy to confirm. On Aug 14th he called me and said the biopsy confirmed what he thought except that it couldn’t confirm if the tumor was benign. He also said that it needed to come out and that they will be able to test it then to see if it is cancer.
I called my original surgeon back with the results, letting him know I did the EUS and it was a NET. He proceeded to tell me what would be involved in the surgery. He said I needed a Whipple procedure, I am not going to go into details, if you want to read about it just google it but it’s safe to say it’s not a trivial surgery. Once the blood got back in my face, I quickly realized I have to get a second, and third opinion to ensure this is truly what I need. I made appointments at Mayo in Scottsdale and MD Anderson in Houston as I heard it was the best.
The Mayo surgeon was the next one I talked to and the first one Michelle actually got to hear from. Unfortunately, she only had the CT Scan to read (thanks OV hospital for ensuring all my scans were on the CD) but when she talked about it she was much more optimistic. She wasn’t convinced it was a NET and if it was, she wasn’t sure I would need surgery and if I did need surgery, she wasn’t sure I would need a Whipple. She also didn’t believe the pathology report from the EUS proved it was a NET. It only said it had some similarities. Wow! What a 180 from the first surgeon. Michelle came out of that appointment glowing, I came out frustrated, how can two professionals have such different opinions. At a later time the mayo Dr got the MRI and she did change her tune a little, she said it was less characteristic of a cyst then the CT showed and if they choose to do surgery, her guess is it would be a Whipple based on where the tumor was.
I then saw the surgeon at UMC, he was 100% Whipple and ready to set the appointment for the surgery.
In September 2015 I went to MD Anderson in Houston and their initial thoughts were that it didn’t seem like a NET to them. I stayed an entire week and went through the entire diagnosis protocol which included another EUS/biopsy, CT scan and blood work. All the results were negative which meant they felt I had been misdiagnosed, instead of being a NET, it was just necrosis- a mass of dead cells most likely caused by a bout of pancreatitis. Over time the mass would heal itself and nothing else would be required. We set a follow up appointment in December to check the progress.
In Dec 2015 I went back to MD and had blood work and a CT scan. While it appeared the mass had shrunk, there were also areas of it that “lit up” which is more related to tumors. While my Doc didn’t seem overly concerned he said we should get another EUS to confirm the findings.
It took a while to get the EUS scheduled, it wasn’t until June of 2016 I got it scheduled. The mass was still there which would be unusual if it was necrosis, they did another biopsy and confirmed it is indeed a NET. They felt confident in this diagnosis because with all the previous inflammation gone they were able to get a very clear look and a more accurate biopsy sample.
My diagnosis is a neuroendocrine tumor on the head of my pancreas, it’s about 2cm. It has well defined edges (which is a good thing) and doesn’t appear to have spread anywhere else yet. Neuroendocrine is the better of the two types of tumors you can have on the pancreas. Mine is a very slow growing tumor not the fast growing called adenocarcinomas tumors (which is what Patrick Swayze had).
A few things to note about my diagnosis- as I stated above I had abdominal pain that was diagnosed as inflammation of the pancreas (or pancreatitis). This didn’t cause the tumor, in fact the tumor has most likely been there for years. The two are clinically separate, if you ask your typical GI Doc the two are not related and I got very lucky that the tumor was found. However there is also the theory that my pancreatitis symptoms where increased by the tumor being present. So I consider myself very lucky that it was found. If I didn’t have that bout of pancreatitis, this tumor would be silently growing into a deadly monster
The treatment is surgery. I will be having a Whipple procedure which is pretty involved.
What an emotional rollercoaster. There are days I feel like I am invincible and there are days I am a blubbering idiot. For Michelle too, I can’t even imagine what she has to deal with in her mind. We have had great cries together and we have had days that are mundane.
I have had great support from everyone but two individuals really stick out. They may not even realize the impact they have had as they were both very short conversations, one was even only over text. Both are cancer survivors and have the best attitudes I have ever seen! I have stolen one of their mottos, I will be a badass everyday. He is the biggest badass I have ever met… Keep rocking brother!
The other one I had no idea the extent of what he went through until he told me. I see him often at social functions and he is the same as always, positive and outgoing, the life of the party!
Thank you both for putting me on the right track of a positive attitude.
I am ready to get through the diagnosis phase and get on to the treatment phase!
Questions & Answers:
I am creating this section because there are so many people who care and thus have so many questions. If there is a question you have that is not listed here, please feel free to email or text me your question and I will post it with the answer. Again I am very open to talking about it and you all may have questions or ideas that we haven’t thought of.
Is the tumor cancerous– We aren’t sure but the percentages of my size tumor are much less of it being malignant at this point. We won’t know for sure until they get it out and do full testing on it.
If it’s not cancerous, why are you operating- The treatment is the same if it’s benign or malignant. Surgery is the first option of treatment for tumors of the pancreas.
When will you have the procedure- We are still in the process of scheduling but I will mostly likely have it at the end of September.
Where will you have the procedure done- I will have it at MD Anderson in Houston with Dr Jason Fleming. He performs many Whipple procedures every year and the Cancer center at MD Anderson is one of the best in the world at performing the surgery and the aftercare (which is very important).
What are the treatments post surgery– if all goes well the surgery is curative and no other treatment is required.
But what if it’s cancer– two words… FUCK CANCER. I choose not to dwell on that, I am an optimist. At this point no one has told me I have cancer so I don’t think myself as a cancer patient. We will cross that bridge when we get there but the surgery could still be curative if it is.
What’s the procedure like– I will give you a high level overview but if you want more details, google it.
The procedure itself is a 6-8 hour surgery. They will remove the head of the pancreas, a portion of the stomach and a portion of the small intestine. Then basically they connect me back together. They will also remove my gallbladder.
If you do google it, please take this into consideration- all the statistics you see are the average cases of Whipple procedure. Note most of those people are much older and sicker than me. I am very young to be having this surgery which makes my odds for a 100% recovery much better.
What’s the recovery like- Again you get more details on google but the high level is I will be in the hospital for about a week, will need to stay in Houston for about two weeks after being released, should be back to normal in about 8-10 weeks. They say I will be off the grid for about three weeks.
Are there any long term affects- if all goes well I will be 100% back to normal with no long term affects. Probably the biggest chance of a long term affect is diabetes.
Why did it take so long to get a diagnosis- that’s a great question. One could say I was diagnosed last September but it took a while to confirm it. But I am confident that the team at MD Anderson went about it the correct way. You don’t just perform surgery on the pancreas if you don’t have to, you want to be 100% certain.
Are you in pain– not at all. Like I said above, I was very lucky to find this now. This is why pancreatic cancer is such a killer, it doesn’t expose symptoms until it much further along.