There will be more to follow on this but here are the basic facts and the story in probably too much detail. Feel free to skip over this if it is a bit too detailed. I promise to not be so verbose in the future!
- 9/29/18: Sarah and I went golfing. On the back nine my right back started to really hurt. I thought I must have swung wrong or something…
- 9/30/18: Not good. Lots of pain. Naproxen helped. Went to bed but couldn’t sleep and spent most of the night pacing. (Pacing felt better!)
- 10/1/18: I wonder if this is a kidney stone! But – even if it was – treatment would be NSAIDs (ibuprofen or naproxen) and push fluids. I could do that. I still went to work. Fortunately clinic was quiet. Did you know however that it is hard to chart in Epic when your back really hurts. I closed my office door and tried kneeling to type. I think that was better. I almost went to the ED but felt maybe I was feeling better. I promised myself I would go if it got bad again.
- 10/1/18 (PM): Ok. I can’t sleep again. I am pacing again. I will go. Sarah took me to Blodgett. It was not busy (cool!) and I knew the ED doc. It made me nostalgic to be back there! I could tell stories of all the patients I saw in the room where they put me! They put in an IV, drew labs, took a urine and did a CT scan. Yup. Hematuria present. The PA showed me my kidney stone on the right side. All good. Well – not completely. I am a young healthy man. I am not supposed to have things like kidney stones and nighttime trips to the ED. But maybe I don’t drink enough (I don’t). I can learn my lesson. Oh – and my pain was better by the time I got to the ED. I didn’t even need any pain medicines.
- 10/2/18 (early AM): The ED doc came back. Gulp. Not good. He showed me the mass on the left side on the CT scan. That was NOT good. Quick run of differential diagnoses. None of them very good. Tempting to start googling… Probably not good either. Maybe get a contrast CT scan and make sure there is not more bad news? The ED doc asked if I wanted one. Yes! Next were emails – not going to be at work in the morning – and to my favorite surgical cancer docs. Oh – and to my favorite interventional radiologist. They are all amazing and really good. I am SO happy I can call for their help!
- 10/2/18: Did I mention that Dr. Lane, Dr. Chung and Dr. VanErp are all amazing! They all talked to me. We pulled together a plan. Labs to make sure this was not a functional adrenal tumor. Once we had labs then we could talk about biopsy vs. surgery. Leading possibilities were sarcoma vs benign adrenal tumor vs cancerous adrenal tumor. Radiologist that read the CT thought sarcoma. That didn’t sound good. 5 year survival in the 50% range. Not a death sentence but I would prefer better odds…
- 10/2/18 (afternoon): Went back to work. How do you deal with something like this? I must admit I have learned a LOT from Karen W and Craig A. They do not know but they have been my heros in some ways. I have been so amazed and so pleased that they let us be a part of their illnesses. They have been open and honest in the midst of having to go through scary things. It has been SO good to have information. At least we were not left guessing. I hope I could be as brave as they have been? I started telling people via email and in person.
- 10/2/18 and onward: I had to start learning what it feels like and what it means to be mortal. Planning to write in more detail about this later.
- 10/4/18-10/7/18: We had planned some time off. Sarah and I had a plan for a trip around Michigan. Wow did we need that now! Have I mentioned how wonderful my wife is? She is amazing – my best friend – and a real support to me. We could be together and think or not think – and mostly just be.
- 10/7/18: MyHealth showed me my labs were negative. This was a non-functional tumor. I emailed Dr. Chung. He answered me on Sunday morning! So good to have a plan. He told me he would operate that week and see me the next day to plan it!
- 10/11/18: Surgery done. Taking mental notes on what it is like to be a patient (before 10/1/18 I had never even had an IV before!) Interesting to see what it feels like. I plan to write more about this later.
- 10/13/18: Sent home. Was I really ready? Ok. I could go home. But I started to notice chills and back was hurting on the left (along with incisions on the front). Not a big temp.
- 10/15/18: Fevers and chills and sweats and back pain were getting a LOT worse. It was time to go back to the ED. Sarah asked, “Couldn’t you have thought about doing this at 4 pm rather than 11:30 pm?” 🙂 ED found a renal infarct from the vessel the surgeon had to ligate to remove the tumor. They gave me morphine IV. That was a bizarre experience. I have no desire to repeat that one…
- 10/17/18: Path had been read as benign on the frozen section but now came back as adrenocortical carcinoma. I definitely started reading now. Looks like I am a T2N0M0 (later read as a T3N0M0). This means about a 50-60% risk of a recurrence. Recurrence is not good (= not survivable generally). The hope is that either it never comes back or if it does at least I would have a window of normalcy for a few years.
- 10/18/18: Tumor board recommended radiation. Really? I thought it was contained. Maybe the stats are real. Maybe I need to find more experts… Reading: Incidence about 300-500 cases per year. Few experts. MD Anderson has some stuff on it. I asked for help to figure out how to get to the experts who manage this all the time.
- Fast forward now: Maz Hanna helped me find experts. Roundabout way. He found at expert in Boston. That expert told me about Dr. Gary Hammer at U of M. Dr. Hammer is a real guru (the guru!) I emailed him and he sent me his cell phone and then talked to me for a long time. Thank you Dr. Hammer! When we saw him however I got the sense that this is just how he is with everyone. I am thankful that as passionate as I am about heart failure, there is a doctor who is passionate about adrenal cancer. Anyhow – more details on all of this later but next – we go to U of M visit – long day – 14 tubes of blood – and clear recommendation: radiation x 5 weeks plus 3-5 years of chemo (mitotane). Really good nurse practitioner and nurse coordinators helped explain everything. I have said it before but now I experienced it: The role of physician and NP and RN are all complementary. We each do some things well. Together we do it all very well.
So what does it all mean?
- I had an incidental finding of a large adrenocortical carcinoma.
- I had all evidence of it removed (clear margins).
- I had a renal infarct and now have high blood pressure. That was unavoidable (other choice was to remove my left kidney).
- I could be cured. I might have residual disease (microscopic) and so this might come back. Dr. Hammer thinks my odds are 50/50 or so but that U of M has experience with better outcomes with radiation and chemo up front. That is what we are going to do…
What have I learned so far?
- My colleagues have been wonderful covering for me, taking on extra work and supporting me!
- People are really really important! The support I have been shown is amazing and can make me emotional. Thank you everyone!
- I love my wife! I knew this before but am so thankful to have her to go through this with!
- God is good. We can get into this more later. But for now – I am very thankful that I am not having to be anxious about my outcome. Live or die I come out just fine. I am really not trying to be arrogant and say that I am some super saint who can be so brave. I am not that brave. But I have a God who is gracious enough to give me what help I need to have faith. Or – as the expression goes – “To be willing to be held and not just hold on…”
Image of adrenocortical carcinoma from https://www.medindia.net/patients/patientinfo/adreno-cortical-carcinoma.htm
