My Carcinoid Tumor

About two years ago I coughed up blood. It felt like it came from my lungs and not from nasal drainage. It was pretty alarming. The extent of my health problems over the years pretty much climax at seasonal allergies and activity-induced asthma. I quickly saw my primary doctor who ordered a chest x-ray to make sure I didn't have pneumonia or something like that. It came back normal and my doctor said we'll keep an eye on it. He prescribed me some specific asthma medication as well. Rarely but consistently, I continued coughing up blood. I typically grew used to it and assumed it was caused by my asthma. However, I did see my doctor another time or two for the issue. Eventually he told me I really need to see a pulmonologist. Of course, like any strong man, I put this off, and continued to on rare occasion cough up streaks of blood when I would feel like there was fluid sitting in my lungs.

We were on our yearly ski trip in Colorado this February when my conditions got a little more alarming. I coughed up more blood during those few days than usual and a few times it came up as blood clots. I continued taking my asthma medication and an inhaler. During that trip to Breckenridge Emily and I decided I for sure needed to see the pulmonologist as my doctor had recommended a few months earlier.

Of course I figured the pulmonologist appointment would be fairly routine and I would be told I do in fact have asthma and that I need to become more compliant with my medications. That, if anything, I figured was my problem: I'm what Emily would call a "non-compliant" patient when it comes to taking my medication. I just needed to get better about taking my medication. They first had me do a breathing test. That was actually quite uncomfortable and involved me blowing out as much air as I could from my lungs and then the respitory therapist pumping a bunch of air into my lungs to measure my breathing capacity. They alternated tests with giving me albuterol before and after each test. In the end, they said that overall I had an 18% improvement after taking albuterol and thus I do have asthma (anything over a 12% improvement in a patient my age is seen as substantial). The pulmonologist confirmed with me that I do have asthma, and I should become more compliant with taking my medications. However, he also said that the coughing up of blood is not normal and he wanted to do a CT scan and a bronchoscopy to check things out.

Again I thought things would come back super normal and they wouldn't find anything. Unfortunately I was wrong. After the CT scan the doctor called me and told me that I had a lesion on the bronchial tube leading to my right lung. He ordered another CT scan so he could take a closer look and we kept the bronchoscopy scheduled. The second CT scan revealed the tumor more clearly. It also gave him confidence that it doesn't have a vascular abnormality in which it grows intertwined with arteries / veins and thus makes it extremely dangerous to operate on. He diagnosed me with a carcinoid tumor and this was confirmed after my bronchoscopy the week after.

We've seen a few doctors the last couple weeks. I have a carcinoid tumor around 2.5cm in diameter that is partially inside my right mainstem bronchial tube and partially outside the bronchial tube wall. It's very close to the split in the breathing tube which leads to each lung. The closer it is to that split in the breathing tube, the more challenging it is to operate on. There's no way to know for sure until the surgeon operates if there will be "negative margins." Negative margins would mean the mass is overlapping a tipping point and more extensive measures are required to repair it. If there are positive margins, they should be able to cut out the portion that contains the tumor, along with a buffer on each side of it, and stitch it back together. This is called a sleeve resection. The surgeon described it as a resection and reconstruction of my airway.

The good news so far is this: it's likely this is an isolated tumor and I don't seem to have cancer elsewhere in my body. I'll go through some more tests after the surgery, but I show no other symptoms and these are often isolated. It's also likely that no part of my right lung will need to be removed. This is different from the approach we were told by the first surgeon we saw here in the Twin Cities. He was sure he'd need to take at least the upper lobe of my right lung, if not the entire lung, to properly remove the tumor. However, the surgeon at Mayo doesn't think any part of the right lung needs to be removed, and that the work will be done just in my bronchial tube alone.

The surgery is tough. This carcinoid tumor thing is pretty rare, and even more rare in someone my age and health. Besides an occasional junk food binge, I'm pretty much one of the healthiest people I know, lol. There are risks for complication, including infection or leaking of the repaired airway. An extreme case of complication would be the breaking down of the repaired airway, something that would be an emergency. My recovery will be a long haul. I'll be in the hospital for a week and I won't be able to work for 4-6 weeks. For that same portion of time, maybe longer, I won't be able to pick up Evan. I'll be drugged up on prescription pain medication and moving around slowly. I'll have to have more bronchoscopy's after the surgery to check and see how the tissue is healing and to possibly clear out any fluid in my lungs that I don't have the strength to cough up.

I feel fine. It's almost humorous, and sometimes I do laugh, because I don't know how else to respond. When people ask me 'how I'm feeling' my response feels like "I probably feel better than you do. I ran three miles today and played basketball yesterday morning. I'm sore from a good workout!" Thus, I'm grateful to feel fine, but the reality is that I'm sick. The doctors say that this tumor has likely been growing in me slowly for many years- maybe up to 10 years. Thus, I don't feel the affects of it on my breathing. My lungs have grown so used to it. It's crazy how modern medicine and technology help our lives. Emily and I have discussed how so many people around the world likely live with this until it kills them because they don't live with the technology of bronchoscopy's or CT scans. And many people live with carcinoid tumors undiagnosed because they never develop any symptoms besides challenges breathing which is so frequently attributed to asthma.

My surgery is scheduled for April 19th at Mayo clinic. Our visit to Mayo this week gave us peace about the prognosis and we're confident in Dr. Wigle  and his ability to fix me up. In the meantime, I will live the way I always have. I will strive to love the Lord, love my family and friends, and make the most of the great life God has blessed me with. I will work hard, play basketball and teach Evan how, and do everything else I always do.

Our last year has been a whirlwind, that's for sure. Looking at April of 2017 as of last summer, we were expecting life to look more like this:

• Baby #2 arriving any day to join our little family
• Moving into a larger single family home in which we'd raise our family for the long haul
• Me continuing to work with PPM and leading mission trips in Jamaica and elsewhere
• Emily growing more confident as a nurse practitioner in her new job

Instead: 

• We continue to wonder why Emily experienced a miscarriage (a partial molar pregnancy)
• I now prepare to take a break from my new job with Capstone Homes, which I love and am still growing used to, in order to have an invasive thoracic surgery.
• Emily nursing a weak and recovering surgery patient who happens to be her husband
• We trust that God knows what He's doing with our lives because our life looks very different than what we expected
• We stay in our little townhome with our little family (a home and location we love, but very different from what we expected). 

God has us in His hands. He takes care of His people. In a previous blog I shared about the new Switchfoot song I like so much. I now hear the portion that states: Take the anchors of my lungs. I have one life and one voice. I want to live it well...

Romans 8:38-39 states: 

"I am convinced that nothing can separate us from God's love. Neither death nor life, neither angels nor demons, neither our fears for today or worries about tomorrow- not even the powers of hell can separate us from God's love. No power in the sky above or in the earth below. Indeed- nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord."