Month: December 2016

August 15th, 2016

It was Monday morning, time to go back to work.

Except, I still couldn’t breathe. It actually had gotten worse. Now I was having serious chest pain just from getting out of bed to go to the bathroom.

I needed to go to the hospital. These visits to the pulmonologist every few days and a couple of prescriptions weren’t cutting it. I felt that I needed to be admitted. I told my wife she would have to call in to work and tell them she was taking me to the ER.

So off we went. This time we headed to a larger hospital (Mercy Regional) further away in Lorain. This was partially because they had a larger and more fully equipped and staffed ER, and also because we expected to be admitted, and this was the hospital they would end up transferring me to anyway.

We got there and informed them of my recent cancer diagnosis. Of course, they did the EKG thing again because I had chest pain. We also did a new chest x-ray, and after an hour or two we were finally informed that I (still) had severe pneumonia and they decided to admit me.

So, no wonder I couldn’t breathe. I had lung cancer spread throughout both lungs AND severe pneumonia on top of that.

They placed an IV in my arm and they gave me a couple of IV antibiotics 2-3 times a day. I wore my nasal cannula around the clock. It was hooked up to the hospital oxygen supply on the wall. They took blood once a day, and for some reason, it had to be at like 5 AM every day. That’s not a pleasant wake up, let me tell you. Oh, but the best part about being in the hospital off your feet is the shot to prevent blood clots everyday. In the stomach.

Doctors and nurses came and went. However, I didn’t feel like I was getting better. And I had developed a strange condition. When it was time for me to pee, I got a massive pain in my chest. It didn’t make sense, the doctors didn’t understand it, but it was some of the worst pain I’ve ever felt.

I already could barely make it to the bathroom. Just that trip of ten feet and back left me gasping for air. Because of this, I sat on the edge of my bed and used a plastic urinal bottle instead. The nurses actually encouraged this anyway so they could track my urination. Despite the pain, I did make it to the bathroom for BMs. I wasn’t about to start using a bedpan!

I will say that they would provide me with whatever I needed for pain. When the chest pain got really bad, they would give me Dilaudid in my IV. Now that’s some serious pain relief. When Vicodin wasn’t cutting it for long term pain relief, they bumped me up to Oxycontin. All powerful stuff. I can see how some people can get addicted to that type of stuff.

We got some news on my cancer a few days into my stay. My oncologist Dr. Escuro stopped by and told me that I had tested positive for an EGFR mutation. Only 10-15% of adenocarcinoma cases in the U.S. have this mutation, and I am one of them.

As he had mentioned before, this meant no chemotherapy. He presented this as good news, but I wasn’t so sure. I had been preparing myself mentally for chemotherapy. I was ready to lose my hair. I was ready for the sickness, because I wanted to bombard this cancer with some serious drugs and kill it, no matter how bad it made me feel.

And now I was going to just take a pill?

He assured me that this pill was now the standard first line treatment for EGFR-positive adenocarcinoma.

So we did some internet research on it. The drug is called Tarceva. After doing a lot of reading, (I had a lot of time sitting in a hospital bed all day), I felt better seeing the results that people were getting with this drug. A couple of days later on August 22nd, my wife was able to pick up the first prescription of it and I took the first pill. This was the first day of my cancer treatment.

One nice thing is that quite a few friends and family came to visit me. My parents came of course. So did my brother and sister and their families. My family all lives a couple hours away so that’s no easy trip for them. My nephews brought me homemade cards, which was nice. I still have them.

My boss and the VP of my department at work came by as well. Maybe they thought I was faking it until then! (haha) A friend I hadn’t seen in years came by. I really appreciated seeing him. He lives on the other side of Cleveland, so it was a long drive for him, too. Another friend is a fellow Star Wars fan and brought me a big stormtrooper figure as a gift. One friend shares my interest in politics and brought me some Hillary Clinton toilet paper (sorry if you’re a Hillary fan!). My wife’s coworkers put together a huge basket full of gifts. We had visitors from our church as well. Lots of prayers were being said for me. We are very blessed to have such support.

Towards the end of my stay, I got a wakeup call of just how sick I had become. This had all gotten worse gradually over weeks. I was standing while the nurses changed my sheets or something, and I fell. I just lost my balance and fell down.

I felt myself going down, so I bent my knees, put my arms down and kind of did a sitting motion and rolled on to my back. So I didn’t get hurt at all. But the nurses freaked out. (As they should, I suppose).

“Did you just fall?!”

“Yeah. I’m OK. I’m fine.”

“No you’re not, don’t try to get up by yourself.”

Oh jeez. Now I was just embarrassed. But yeah, apparently when a patient falls, its a BIG deal in the hospital. They rushed me to Radiology for x-rays all over and everything. I felt embarrassed and stupid. How could I have fallen? But the next time I stood up, I could feel my legs buckling again and my balance going again.

Now I wasn’t allowed to get out of bed without calling for the nurse. And they activated an alarm on my bed that would go off if I got out. Wonderful.

The idea of being in the hospital was to treat the pneumonia so I could start breathing better. Long term, as the cancer was treated, my breathing would improve even further. But for now, after a week in the hospital, I wasn’t feeling any improvement at all. We were getting a bit discouraged.

Its now shortly after getting my lung cancer diagnosis, and my breathing is still not improved. Anything more strenuous than walking made me breathe heavy. My pulmonologist prescribed oxygen therapy.

So we headed over to the medical supply company and they sent us home with a portable oxygen concentrator, and said they would be delivering another one to our house that could fill portable tanks. An oxygen concentrator takes in regular air and removes almost all of the nitrogen out of it. The result is near pure oxygen that it put out from a flexible tube. You wear a cannula and breath in the extra oxygen.

We also had a decision to make. My diagnosis was on Thursday, August 4th. On Saturday, we were supposed to leave on vacation. Most summers, we spend a week in Holden Beach, North Carolina with my parents and siblings.

We knew this year, though, it would not be a good idea. As hard as it was for me to breathe, it was even worse outdoors in the hot summer weather. I would be stuck in the rental house most of the day and not real close to a hospital.

So it became a “staycation”. My wife and I had scheduled the week off of work, of course, so we stayed home. It gave me a chance to get some rest and come to grips with our new reality.

The call

Thursday morning, we had a followup appointment with Dr. Escuro. My wife and I had only been awake for a few minutes when my phone rang. It was Dr. Khabbaza. We were actually expecting him to call, we just didn’t know when. He was calling with the results of my bronchoscopy.

I put the phone on speaker. He got right to the point.

It wasn’t sarcoidosis.

“You have lung cancer. It’s adenocarcinoma.”

Total shock, of course. My wife gasped. Then started crying. Lung cancer was never discussed as a possibility.

“Is it treatable?”

“Yes. Your oncologist will look at all of the test results and go over what treatment is best right now.”

Normally, he wouldn’t have given such a diagnosis over the phone, but he knew we were on the way to the oncologist already. We asked a few more questions and he told us how sorry he was about the news. Dr. Khabbaza is one of the nicest doctors I’ve ever met. If his office weren’t such a long drive, I’d still be seeing him as my regular pulmonologist. I recommend him to anyone.

Stage IV

We then saw Dr. Escuro again, as planned. He had also received the results and answered a lot of our questions. He also had the images from my scans the day before. The lesions on my spine were also cancer that had spread from my lungs. We asked what “stage” I was at. Since the original cancer had started in one organ and spread to another, I am stage 4.

We weren’t done with the tests either. My blood tests indicated a possibility for colon cancer. He said it was possible that it actually started in my colon and spread to my lungs. So he was scheduling a colonoscopy because that was the only way to be sure. (It was a few days later, and my colon is clean as a whistle, no cancer, no polyps.) He also was waiting for further tests on my lung biopsy.

The bronchoscopy indicated that I have adenocarcinoma, but he was awaiting more testing to see if mine had a genetic mutation. He said it was rarer in the United States, but that some lung cancers have what’s called an EGFR mutation. He said that if I turned out positive, than my first line treatment would be a pill. Since he didn’t expect that, he gave me information on the three chemotherapy drugs we would be using, starting within a couple of weeks.

This was all a lot to take in, of course. We had to call my family. I had to tell my employer. We got to my wife’s parents (they live next door) and they were crying. My wife cried for days. No one expects to get cancer at 44 years old.

August 4th, 2016 is a date neither of us will ever forget.

Bronchoscopy

Early Tuesday morning, August 2nd, my father-in-law drove me to the main campus of the Cleveland Clinic for my bronchoscopy. After checking in and waiting for a bit I was called back to the prep area. I changed into the requisite hospital gown and waited in a bed while a nurse stuck me with an IV.

Dr. Khabbaza came in and introduced me to Dr. Akindipe, who would be doing my procedure. When it was time, they took me into the bronchoscopy room. There were a lot of monitors and equipment, it looked pretty high tech. I learned later that the Clinic has one of the top bronchoscopy suites in the world.

 

During a bronchoscopy, a scope is inserted down your throat into your lung passages. They can go in through your nose or your mouth. In my case they went through my nose. I was knocked out, of course.

The doctor is able to look around your lungs to see what is going on. More importantly, the scope has tiny forceps that are able to take very small tissue samples for analysis.

I don’t remember any of the procedure. The last thing I remember was looking around the room at all the equipment and then one of the doctors told me he was going to sedate me.

The next thing I remember was waking up back in some post-op room. After a few minutes they let me go and we drove home.

More scans

The next morning I headed to Mercy Regional Medical Center for my scheduled scans. A CT scan is like an X-ray, except that it takes multiple images in a cross section, like multiple slices.

Most often, “contrast” is used during a CT scan to provide a clearer image.  Contrast can be either oral, IV or both. For these scans, I had both. For oral contrast, you have to drink a barium fluid. It’s thick like a shake and usually has a berry flavor. It’s not very good, but I drank it all.

The IV contrast is injected into your IV during the scan. It feels warm going in and especially makes you feel warm in your crotch. It makes you feel like you wet your pants, but the feeling goes away in a few seconds.

For the scan, you lay on a narrow table and then they slide the table into the center of a giant donut. For chest scans, you have to hold your breath while the scanner is taking images. That’s not easy when you are having breathing problems. Usually a scan takes just a couple of minutes, but this time, I was having multiple areas checked, so it took a little longer.

Next was a nuclear bone scan. For this test, you are injected with a radioactive tracer. Then you wait for an hour for the tracer to soak into your bones before the scan. Then you lie on a platform and a special camera takes pictures from head to toe. It can detect the tracer and how much of it has been absorbed by your bones. This is a slow test. It took about 45 minutes and you can’t move. I just relaxed. I might have taken a nap.

When I was done, my father-in-law joked that I probably glowed in the dark now. They said if I had to fly that I would set off alarms at the airport, so they gave me a card to give airport security. I wasn’t traveling anywhere but took the card because I found it amusing.

To the ER

On Sunday night, July 3rd, things were getting worse. I was breathing heavy without actually doing anything strenuous. I was just sitting. What’s worse, I was feeling pain in my chest. I told my wife it was bad enough to take me to the ER.

The closest hospital is a small one in Oberlin, so we headed there. As soon as they heard the word “chest pain” they were concerned and hooked me up to an EKG machine. I knew I didn’t have a heart condition, and wasn’t surprised that everything there was normal. They took me for chest x-rays and we waited as the doctor looked them over.

It was not a good sign when instead of getting results from the x-ray, I was told the doctor now wanted a CAT scan and the nurse started putting an IV in my arm. I’d never had a CAT scan.

Finally, a couple of hours after first arriving, the doctor came and told us that I had pneumonia and that my lungs looked “pretty bad”. He gave me prescriptions for a couple of antibiotics, a referral to a pulmonologist and told me to follow up with him ASAP.

The days afterward didn’t get any better. I missed three days of work. On Thursday night the 7th, I was supposed to take my daughter to an Indians game but was still too sick. I had bought tickets to the Cleveland Orchestra for Friday night and we had to cancel that, too.

The following week I went back to work. Despite the rest and the antibiotics, I wasn’t feeling any better at all. But I couldn’t miss any more work. I also had developed a dry cough. This week, I saw the pulmonologist in Lorain who showed me my CAT scan from the ER.

The inside of your lungs is supposed to look black on an X-ray or a CT scan. Mine were full of white splotches. The doctor said this was very abnormal but he couldn’t tell exactly what was wrong. There were too many possibilities and more information was needed.

He told me that it would probably take a bronchoscopy to be sure what it was, but that he was leaning towards “hypersensitivity pneumonitis”. A bronchoscopy is a procedure where they stick a scope up your nose, down your throat and into your lungs. A doctor can look around and also use tiny forceps on the scope to take very small tissue samples. He gave me a number to call at the Cleveland Clinic and said it would probably have to be done at their main campus.

The Cleveland Clinic number was to their department for Interstitial Lung Disease. It was the first time I’d heard the term, but hypersensitivity pneumonitis is a form of ILD. It comes in many different forms, you can read more about it here. I was able to get an appointment with a specialist about a week out.

Some ugly numbers

On Saturday, July 23rd, I received some results in the mail. Every summer we have a voluntary health screening at work. They draw blood and do a pretty thorough battery of tests on it. Most of the focus is on your weight and cholesterol numbers, but the reports include a lot of other information as well.

Healics is the company that does our screening, and I knew something was wrong when they actually called me at work on Friday. That’s extremely unusual. They told me that a couple of my results were something that I should call my doctor about right away. Check out the numbers below. They are from the past 5 years, with 2016’s results on the left hand side.

 

 

 

I did call my primary care doctor, Dr. Hussain, on Monday, and she wanted to see me immediately. I got her up to date on everything and she pulled up my CT scan from the ER. She noticed something on the CT scan that no one else had. She saw lesions on a couple of my vertebrae.

I didn’t know it at the time, because she didn’t say it. But I know now what she suspected. The pulmonologist happened to call me while we were there, so I handed her the phone so she could talk with him as well. She excused herself and left the room to talk to him. Not good. When she returned, she made me an appointment for me with an oncologist about the bone lesions.

Myeloma?

On Wednesday morning, July 27th, we went to see Dr. Escuro, the oncologist. We were in denial at the time of what kind of a doctor an oncologist is.

They took blood and he ordered more tests, including a 24-hour urine test. I had to pee in a big jug over 24 hours and take it back to the lab at the hospital. He was concerned that I might have multiple myeloma, a cancer that occurs in bone marrow.

Other tests that he ordered were more CT scans, this time of the brain and abdomen, plus a nuclear bone scan.

On Friday, I saw the pulmonologist from the Cleveland Clinic, Dr. Khabbaza. I had to do some breathing tests while I was there. That wasn’t fun. You have to inhale as deeply as you can and then exhale as hard as you can, for as long as you can, all into a large tube. We had to start over a couple times because in my condition it was painful and made me cough. My breathing was still going downhill.

He looked at the CT scans of my lungs and said that, indeed, a bronchoscopy was necessary to know exactly what was wrong. However, he was leaning towards sarcoidosis, which is a different form of ILD. We went into the weekend with more questions than ever.

For years, I had wanted to build a deck on the back of our house. We had nothing outside our rear sliding door but a couple of wooden steps down onto the lawn. After planning it out all spring I started to get to work in June. My dad was coming to help me with it at the end of the month, so I wanted to have the footings in the ground so we could start framing right away.

I rented a “one man post hole digger” that was supposed to make the job easier, but using it still seemed to take a lot out of me. I was losing my breath faster than usual. I figured I was just getting more out of shape. Later, while we were framing the deck, which involved carrying a lot of heavy lumber around, I continued to feel out of breath a lot sooner than I was used to. I also started noticing that it hurt to inhale deeply.

I had mixed a lot of bags of concrete in order to pour the deck footings. I
began to worry that perhaps I had accidentally inhaled some of the cement dust and damaged my lungs.

After a weekend and three vacation days from work, we completed all of the deck except for the railing on Wednesday, June 29th. We had two days back at work and then looked forward to a three-day weekend with Independence Day right around the corner.