A chronicle and my lessons.

I write this to give you a recap of events of the last few months and share with you the lessons I have learned in the process. Bear with me on the long chronicle I promise I will get to the lessons.

The chronicle

In May of last year, I decided I no longer wanted to weigh 221 pounds. I was having a hard time climbing stairs, riding my bike and it just felt awful. The stresses of life, the constant eating out on the endless test trips and a lot of laziness had contributed to the pregnant bulge that I was so tired of staring at in the mirror. I go to my doctor regularly and as my wife can attest, I become obsessed with the test results. I have a chart of my test results back to 2004. -I am an engineer, I can’t help it.

On the 23^rd of May, I sat in my doctor’s office stressing over the results of my cholesterol test. How bad was it going to be? I am vehemently opposed to cholesterol meds. The side effects scare me and I have family that have suffered because of them. I do take blood pressure pills and I hate taking those. I swear I will get off of them. To my delight, the cholesterol numbers came in good despite the weight gain. I am surprised as is my doctor. (Total cholesterol 189). We decide that I should return in December to have another look since I have been gaining weight.

While shaking hands with the doc as I leave the exam room, I have no idea that this appointment and the events of the next seven months are about to change my life forever. I am elated with my cholesterol numbers and seat myself at the checkout desk. I am chatting with the checkout clerk as she reads through the follow up instructions from the doctor. I am to have blood work done before the next visit, pee in a cup, etc. After few moments, she graciously informs me that it is much too early to make an appointment for December and I will be placed on a call list for some time in September. I am satisfied with that, so I gather my paperwork and head out the door.

I sat in my car staring at the weight on the form in my hand and knew I need to make a sustainable change in my life. I called my wife and gave her the results of my appointment. She suggested I use a calorie tracking app to help me make better choices when I eat, especially when I travel. I decided to use the MyFitnessPal app from Under Armour to track my food weight and exercise. I started the next day.

Summer came and was quickly drawing to close in mid-September, I had spent it travelling, tracking my food, weight and exercise. It was a stressful summer, the subject of a future rambling, yet I had managed to stay on track. My blood pressure was normal (115/76) and I was down to 202 lbs. I had lost 19 pounds. This was great! It was the 16^th, one of my favorite days in September and my mom knows why! The phone rang, it was the doctor’s office. They had an opening on the 23^rd of October would I like that appointment? Sure! I mean why not? I can be done till next year, it won’t interfere with vacation or work test trips.

October 23^rd rolls around and here I sit in that same exam room waiting on the doctor. I am stressing about those cholesterol numbers. I had already viewed them online and they had all gone up despite the weight loss. What the heck? The doctor came in and we talked about them, he was not concerned given the weight loss and the improvement in my blood pressure. He decided a routine physical exam was in order and we discussed my health since the last appointment.

My wife had me promise to mention the chest pains I was having without any apparent cause. Saying the words chest pain to your doctor, in most cases, gets their attention. My pain was very sharp located on my right side, opposite my heart, and would last for a day then go away. I told him I would get pains that I could explain, muscle pains in my chest from trimming trees, working in the garage, but these were outside of those causes. They were just there and then gone. I did not mention the minor back pain on my right side. It was nothing and not worth mentioning.

After the once over, I was being sent to have an echo stress test performed. This is the test where you run on the treadmill and they perform an echocardiogram before and after to see what is going on in your heart. The test was run on October 30^th. I managed to run for 12 minutes, achieve 97% of the expected heart rate for my age and scored excellent in the exercise tolerance for this test. Everything was looking good. There was one hitch, it was noted that I had a dilated ascending aorta.

The doctor’s office phoned the next morning to deliver those results. They wanted me to go have a CT scan performed so they can get a better look at my heart and its associated plumbing. Do you think you know where this going? Are you sure? Well hang on you are in for a plot twist!

November 7, 2019, 12am. Valerie and I sit here in on floor B1 in radiology reception A waiting for my CT scan. Side note and not so funny thing is the previous week were on floor B2 at 2 am waiting to get her an MRI. The CT scan takes about an hour. The process goes like this, get undressed, nurse inserts the IV, you sit for a bit and then get run through the machine. Yes, it really does feel like you are peeing your pants when they run that dye through you. They are very quick to remind you that you are not peeing, just stay still!

Friday, November 8th, I am sitting at my desking taking note of the U of M portal notifications. I admit to being apprehensive about the results. This can’t be good and I am not sure what can be done about the aorta. Surgery? Some other type of procedure? Clean living combined with healthy eating all summer is not helping. As I am navigating the portal, the doctor’s office is calling. The nurse informs me that the doctor will be calling later, but that I need to immediately see one of the urologists at U of M that specialize in my issue. Then she gives me the number to call.

While on hold with the urologist’s office, I read the radiologists impression from last night’s CT scan.

IMPRESSION:

1. Borderline dilatation at the level of the aortic sinuses measuring up to 40 mm.

2. Enhancing mass in the right kidney highly suspicious for renal carcinoma.

3. Progressive upper lung masslike opacity, specifically within the right upper lobe, related to increased coalescence of the perilymphatic nodules due to patient's underlying pulmonary sarcoid. (Blah, blah blah, your sarcoid got worse according to the CT scan.)

So, I am no longer concerned about my heart! How wonderful! What does carcinoma mean? Is my sarcoid acting up? What the hell? This can’t be right. These are not my test results! I got up from my desk and I noticed I was laughing. I walked out to the garage and made a few laps around the garage. I just could not help but laugh. It was the kind of laugh where you just can’t even believe you are awake and that this is happening. It’s like being up $5000 in Vegas and losing it all in single roll of the dice. All you can do is laugh.!. After a few minutes, I returned to my desk, grabbed my phone, went back out to the garage and called my wife. Then I called my dad.

On the 12^th of November, we meet with the first urologist. He takes his seat and says to us that there is an 80% chance you have kidney cancer. He pulls up the CT scan on the computer and covers the right kidney with his hand. He says, this is your left kidney, this is what a normal kidney looks like. Ok good, I have one normal one. He uncovers the right kidney and there it is, this bright white orb occupying the same space as my kidney. It is a tumor that is 37mm in one direction and 30mm in the other. At this point, all of the wishful thinking in the world is going to do you no good at all. While there is a 20% chance of not having cancer, I know deep down this is not the case.

The doctor presents us with three options. The first is monitor. He indicates that these types of tumors grow very slowly, usually 1 to 2 mm per year. I can see Valerie doing the math in head as to how long I may have had this thing. Option #2 is a procedure called ablation. My understanding is that radio frequency device is used to essentially burn the tumor away. This will only be 85% effective. The final option is surgery. This seemed to be the only option I felt comfortable with and my odds moved up to 95%.

We felt pretty good with what we heard and he made us feel very good about the outcome. Routine, simple, 1 day in the hospital, back to work in two weeks, no problems. Then he told us he no longer performs the surgery I need and that I would have to see his colleague. At checkout, we were given a Jan 3^rd appointment to meet with next doctor. Valerie was a very unhappy camper. She will tell you I have all the patience. I would spend the next 4 or 5 business days on the phone getting that appointment pulled ahead. We are engineers pulling ahead stuff is what we do.

10 days later on the 22^nd of November, we are meeting with doctor number two and the one who will perform the surgery. (Yes, I really do know how to pull things ahead). He sits down in his chair and runs through the same options. His conclusion is that surgery is only option available to me. He looks back on a 2015 ultrasound of my kidney and liver and there is no mention of a tumor in the kidney at that time. So much for the 1 to 2 mm growth rate per year.

He does not sugarcoat my condition as much as the other doctor. My tumor is right up against and involved in the renal artery. If it were out in the kidney a little more this would be so simple. The surgery he wants to do is a partial nephrectomy where they remove the tumor including some of the surrounding parts of the kidney. In this procedure, he has to clamp off the renal artery prohibiting blood flow to the kidney. The kidney can survive about 30 minutes without blood flow before it can cause complications. He tells us if he can’t get the tumor out in 30 minutes he will probably take the whole kidney.

It’s at this point I am getting sick to my stomach. What does life look like with only one kidney? He keeps talking about the potential for dialysis. If he removes the whole kidney my kidney function is automatically cut in half and with my kidney numbers I don’t have a lot of margin to the dialysis threshold. I walked in here feeling good, now I am wondering if I will get back to doing the things I enjoy.

But wait, there’s more!! He won’t perform the surgery until I am cleared by my pulmonary doctor due to impression #3, Progressive upper lung masslike opacity due to patient's underlying pulmonary sarcoid.

In 2016, I got a case of pneumonia, on a test trip in Arizona, and they found spots in my lungs. Turns out it’s an auto-immune disease called sarcoid. I have no symptoms. I have 97% of my lung capacity available. It’s just there. With words like progressive and increasing, however, we need to be sure the cancer has not spread to the lungs. We ended up meeting with the pulmonary doc on the 27^th. He was confident I would have no issues with the surgery and the sarcoid has just changed.

Side note, the lungs are the next stop for this type of cancer. I would not know this till after the surgery. I could not bring myself to research this cancer. It was just too much to take in. It was depressing. Ignorance provided some serenity and I still have the other areas of my life to run.

Phone rings again, December 2^nd, the doctor is discussing having a biopsy done before the surgery. He wants to know what he is dealing with. This will help him make the call to take the whole kidney or not. If by some chance it is benign, it is even more likely that I will keep most of the right kidney. He has also decided on a surgery date of December 11th in the afternoon.

Biopsy day comes on December 4^th. They shove a needle in your back with the aid of an ultrasound, take a few samples and they are done. I spend two hours flat on my back before I am released. The next day, the phone rings as Valerie and I are driving home from work. It’s cancer, 100%. The clear cell type and the doctor labels it stage 2 to 3 since the renal artery is involved. It’s surreal getting your cancer confirmation while driving on I-96, but nothing surprises me anymore. It is symptomatic of how my life progresses.

A week of sleepless nights and the day of surgery arrives. I am on the schedule for the afternoon on the 11^th so we arrive at noon and normal surgery preps occur. At 1:45pm, the doctor comes in to greet us, Valerie, dad, Laura, and he rehashes what he expects. He then leads us in a prayer for the successful outcome of the surgery. It was unexpected but appreciated more than he will ever know. Before 2pm, I am wheeled out.

The surgery lasts five hours. I still have two kidneys, albeit one has a sizeable chunk removed. Apparently, in the recovery room, I woke up and asked Valerie, “how many kidneys do I have?” She assured me I had two and I went back to sleep for two hours. I don’t remember anything until 10:30 pm that night. I am in a lot of pain. I am in the short stay surgical unit (SSSU) for the next three nights until I am ready to go home and complete my recovery.

My lessons

First, I am the luckiest guy on the planet. As I write this, my kidneys are cancer free! This ordeal started late in October and was done in December which is rather remarkable. The biggest lesson I have learned from all of this is do not ignore pain. IF YOU CAN’T EXPLAIN IT, HAVE IT CHECKED. If I had kept my mouth shut in my October doctor appointment, by this time next year, I would be looking at a more severe diagnosis and possible metastasizing of the cancer. The tumor grew 1 mm, from 37 mm to 38 mm, in a month versus normally requiring 6 months to a year for that to occur. The cells of the tumor were the most aggressive for the renal clear cell carcinoma.

The word cancer conjures up all kinds of emotion, fear, sorrow, calmness and confusion are just few. Fear, however, is a great motivator as the cliché goes. It drove me to have tough conversations in my own head as well as with my family. This brings us to the second lesson. I do not have my finances in any sort of shape. I had to review all of my beneficiaries for the insurance policies that I have, through work and external to work. I had to decide, in the event that I die, what I want to happen. My wife, who was having her own emotional response to the news, and I had to have the conversation of what I though she should do in the event of my demise. This was a series of conversations that are difficult, to say the least, but are best done under more favorable circumstance. My dad and I had a similar conversation since he is primary beneficiary on one of my policies. I tried to give him as much verbal instruction as I could. I never had the opportunity to write it out before the surgery. The lesson here is have a WILL. I do not have one yet but I will, no pun intended! No matter your age or how much or how little you have write it down before you need to and review it regularly. It will make the conversation a hell of a lot easier and you are less likely to miss something important.

The last lesson is ENJOY LIFE. It’s a gift. Infect as many you can with enjoyment in and of life. Just because you get cancer does not mean everything in life changes. Some aspects refuse to change. I had the same job. The same financial issues. Leaves still fell on the lawn. Stuff in the house still needed fixing and host of other personal issues that consumed me are still present. I guess what I am saying is I have to lead life by example or change those aspects that are not serving me. This is a wake-up call and it is up to me to heed the call.

Finally, the diagnosis of cancer, as eluded to above, sends you spiraling through the gamut of human emotions. Angry, sad and calm in short periods of time is draining and unusual for some who has been labelled as emotionless. I think the emotional experience requires documentation by everyone who passes through this experience. I think it would be calming, comforting and helpful to those who will have this experience in the future. I plan to do that.

As I mentioned, don’t ignore pain, it can save your life. Below is a list of symptoms for my particular cancer. If you have any of these get yourself checked out. I sourced the following from here ( https://www.healthline.com/health/renal-cell-carcinoma )

When RCC is in its early stages, patients may be symptom-free. As the disease progresses, symptoms may include: a lump in the abdomen

· blood in the urine

· unexplained weight loss

· loss of appetite

· fatigue

· vision problems

· persistent pain in the side

· excessive hair growth (in women)

What causes renal cell carcinoma?

Medical experts don’t know the exact cause of RCC. It’s most commonly found in men between the ages of 50 and 70 but can be diagnosed in anyone.

There are some risk factors for the disease, including:

· family history of RCC

· dialysis treatment

· hypertension

· obesity

· smoking cigarettes

· polycystic kidney disease (an inherited disorder that causes cysts to form in the kidneys)

· the genetic condition Von Hippel-Lindau disease (characterized by cysts and tumors in various organs)

· chronic abuse of certain prescribed and over-the-counter medications such as nonsteroidal anti-inflammatory drugs used to treat arthritis, and medications for fever and pain relief such as acetaminophen

Thank you so much for taking the time to read this! Spread it around, especially to anyone who won’t see their doctor. It could make a difference.

-Tim

Sarcoidosis https://www.healthline.com/health/sarcoidosis

Gilbert’s syndrome https://www.healthline.com/health/gilberts-syndrome

High Blood pressure https://www.healthline.com/health/high-blood-pressure-hypertension-symptoms

High cholesterol https://www.healthline.com/health/high-cholesterol

U of M https://www.uofmhealth.org/conditions-treatments/adult-urology/robotic-urologic-surgery