Cancer Blog
By Brian Zimmerman
Begun on July 31, 2021
Email: dyingman1@yahoo.com
My Dying Words
Entry #5:
August 5, 2021
13 Come now, you who say, “Today or tomorrow we will go to such and such a city, and spend a year there and engage in business and make a profit.” 14 [a]Yet you do not know [b]what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away. 15 [c]Instead, you ought to say, “If the Lord wills, we will live and also do this or that.”
James 4:13-15
My Timeline for cancer
I am sometimes asked to give a sort of timeline as to how this experience all unfolded so I’ll take this entry as an opportunity to do that.
It Begins
It started somewhere around the end of December of 2020 during the time when the COVID vaccines were being first administered. I had gotten my first shot at the main hospital of the system I work for, and had a bad night of night sweats, muscle aches, and a little soreness, but nothing terrible, and it lasted only about 24 hours. But, before I received the second shot in January (2021), I noticed one day that when I ran up the basement stairs in our home from the family room to the kitchen, I was briefly short of breath. “Huh. That’s odd,” I thought, but then thought nothing more of it. I was still working full time (though only 32 hours a week) in home health physical therapy, so was busy with work and chores and the rest of life as it happens. My wife and I had dropped our gym membership as there were so many restrictions in using the gym and decided to lift weights in the garage in the basement of our home. I noticed over the course of weeks that it became harder and harder for me to perform a workout. We weren’t doing anything that strenuous, but at the end of workout I was doing lunges holding two 45 lb. dumbbells. At each workout, I became progressively more short of breath after performing that exercise till finally I started panting when I finished. At that point, one day after such an experience, I called the PCP’s (primary care physician, in other words, the family doctor) office, and requested a visit on a Wednesday because that was my weekly day off. “It’ll be a month before we can schedule you a visit.” “Yeah, but I’m really short of breath, something is seriously wrong.” “That’s the first appointment on Wednesday we have available”. So, I was stuck with that. I guess you might think I should have gone to one of the offices that take walk ins for the same day, or even to the emergency department (ED) or had sense enough to schedule it on a different day, but I doubted the ED would want to waste time on someone working full time who was still lifting weights, and I figured the same day office would in effect tell me to go see my PCP, and I hated taking a day for something that I figured was some minor problem. I may have been wrong and made a bad choice, but hindsight is 20/20, right?
Finally, I see my Primary Care Physician (PCP)
I did finally see my PCP who listened to my story and told me that it was likely one of 3 causes: medical (e.g., anemia), heart (most likely), or lungs (very bad if that was the case). So, he would order some blood work to check for things like anemia, do an EKG and schedule a visit with a cardiologist, and get a chest x-ray. So, they did the EKG (normal), drew the blood work (all normal), and did the chest x-ray. The tech who shot the x-rays told me to have a seat and that she would be right back. I sat down in the empty x-ray room, not really thinking anything about it, and checked email on my phone, texted my wife, poked around on the internet and waited. In few minutes, I saw a pair of feet appear in front of me. Lifting my head I saw it was the PCP. He said that the tech virtually never came to get him because of an x-ray, but had this time. “We know why you’re short of breath,” he said. “Come and look.” I thought that sounded like good news. Maybe he give me some pill like an antibiotic for some lung infection, or some drug for some weirdo fungal infection, or for inflammation or severe allergic reaction and I could get back to work. “You’ve seen a chest x-ray before, right?” I nodded yes.
“X-rays are blocked by dense tissue like bone, which show up white, but soft tissue is dark. Look at your x-ray”. My lungs were white in the x-ray with little bright spots scattered around. “What is that?” I said. “I don’t really know,” he mused. “I’ve never seen anything like it before”. “What I think it probably is is scarring of some type like Idiopathic pulmonary fibrosis.” (IPF. IPF is a condition whose name pretty much says it all: Scarring (fibrosis) of the lungs (pulmonary) for unknown reasons (idiopathic)). “I’ll order a CAT scan of your chest, and see what it tells us, but there’s no good treatment for IPF.” I was stunned. “What am I going to tell my wife?” I exclaimed. “What’s the prognosis?” I asked. “3 to 5 years,” he said. I was numb by this point wondering how I was going to break this news to my wife. As it turned out, the PCP was wildly optimistic about my prognosis.
I Tell My Wife and the First ED Visit
I told my wife who took it well and with her characteristic good sense observed that we didn’t really know what was wrong and that it was better to wait on the CAT scan before jumping to conclusions. I agreed, but didn’t feel very hopeful. Meanwhile, I continued to live fairly normally, working each day, until one day I started coughing as I left my home to see patients and continued to cough, and couldn’t stop. I had to pull my car over to the side of the road until I could get control of my breath. I was gasping for air, and finally called my patients to cancel my visits, and my supervisor to let him know that I wouldn’t be working that day. Fortunately, he was very understanding as I had already shared with him the PCP’s assessment. My wife said I should go home and rest, but I disagreed and felt if I was taking a day off for this illness, whatever it was, then I should I go to the ED and see what they had to say. It was pretty much a wasted trip, as I had suspected a month ago – when this event had started – that it would be. The ED MD was a fairly young guy who basically said what the PCP said. “I have no idea what’s wrong with your lungs, but they look like people’s lungs who have suffered some serious damage from COVID. I’m going to have you tested for COVID.” “But, I’ve had the vaccine.” “I know, but it’s not 100% effective, only 90-95%.” No argument there, so they tested me, but it was negative. “Also,” he explained, “I can’t justify admitting you to the hospital. Your O2 saturation readings are too high, and you’re just in too good a health. It would be more risky for you to be in the hospital than at home. Go home and wait for the CAT scan.” (This visit to the ED was on a Monday and the CAT scan was on Wednesday). So, I went home and waited. I had received a message on My Chart (the software that my hospital system used to communicate with patients) from my PCP who said he had showed my X-ray to the other MD’s in the practice, and they all agreed: we have no idea.
The Second ED Visit
So, on Wednesday I went to have the CAT scan, and read the results from the radiologist that afternoon. It was a laundry list of possibilities including fungal infection, IPF, metastatic carcinoma, etc. Pretty much the same reading that had come from the PCP’s office after my chest x-ray. In other words: we have no idea. Meanwhile, the PCP had made me a pulmonology appointment for further work up, but that visit wasn’t for another month! I was not very happy, but didn’t see what I could do about it. But, as it happened, on Friday night of the following week (by this point, it was April 2, Good Friday), I went to bed early as I was exhausted from work, but woke up after an hour of sleep gasping for breath. I told my wife that I was sorry but I really felt the need to go to the ED. She agreed and took me there but couldn’t stay because COVID restrictions. I went to the ED not just because of the symptoms, but also because I was hoping there was a chance I could short circuit the system by getting admitted and speeding up this very slow diagnostic process of seeing a physician and having a test, then seeing another physician and having another test, etc. As it turned out, I was very blessed to been seen by an ED doctor who had the same thought: we can’t wait. “I’m admitting you and we’re going to get to the bottom of this now, “he said. So, I spent the weekend having a CAT scan again, an MRI, and finally on Monday, a biopsy where they punched a needle into my chest to get a tissue sample. After that I went home and waited.
The Verdict
On Thursday morning I received a call from one of the hospitalists (a physician who works for the hospital who sort of acts as a general contractor for the other physicians who are specialists that come to see you while you’re admitted. When you leave the hospital, they turn you over to your PCP. If you don’t have one, you’re on your own. So, my advice is if you don’t a PCP, even if you don’t think you need one, go get one. I’ve seen patients without a PCP who went into the hospital and when they went home, they were scrambling trying arrange appointments with other MD’s, interpret the hospital tests, etc. Trust me, it is not a good experience. Get a PCP). “Mr. Zimmerman, we received the pathology report back about your lung tissue sample and I’m sorry to have to tell you but your lungs are full of cancer.” It’s hard to know how to respond to that kind of statement, but I finally asked what was next. “Well, you’ll go back to your PCP for a follow up this Friday.” So, while waiting, I called one of my best friends about the news. “You need to get someone else involved”. My friend was on the board of several charitable organizations with one of the most prominent oncologists in the city. “I’m going to call him and ask for his help and advice.” So, he did and Friday morning while I was shaving, getting ready for the PCP visit, the oncologist called. I told him my story, and he said that I needed two things: an immediate visit with an oncologist, and a PET scan, and if I didn’t have those scheduled within the coming week to call him. So, when I went to the PCP, I apologized for involving another doctor, but stated here were his suggestions. The PCP said he could set up the oncology appointment, but couldn’t order the PET scan. I was surprised. “Why not?” I asked. “Because,” he said, “the hospital system has told PCP’s we do not have the right to order PET scans, so you’ll have to get the oncologist to order the PET scan.” I assumed it was a money thing because of Medicare, but who knows.
Help arrives
Monday morning I didn’t see any sign of an oncology visit scheduled in My Chart so I called the oncologist who had spoken with me the previous Friday. “I will have you an oncology visit and a PET scan scheduled this week,” he reported. And, he did. So, I had a PET scan, which I’ll discuss more in another entry. (This one’s too long as it is.) Anyway, I had the PET scan, and went to see the oncologist, who said I needed to start chemo, like right now (and as short of breath as I was by this point, he got no argument from me). So, he scheduled an IV chemo appointment for the next Friday, but before that I had to have Porta Cath installed that Wednesday (two days before the IV chemo session). A Porta Cath, at least the kind I have, is a sort of tough plastic bubble they install under your skin just below your neck in the front. They then thread a tube up through my neck and insert it into a vein and run down near the right atrium of the heart. The oncologist told me it was because the chemo drug was toxic and could cause serious problems if they were administering it by IV in a vein in my arm and the needle came out of the vein. So, now they insert my IV needle into the bubble through the skin. Easy peasy. And, because the PET scan lit up near my stomach, the oncologist scheduled an EGD (basically it was endoscopy procedure where they admit you to the hospital and put a tube down your throat to look at your esophagus/stomach, and in the intestinal tract beyond the stomach). So, the following Monday I had that done. After it was over, the gastroenterologist came back to my room where my wife and I were waiting. He told me I was a mystery patient as the spot that lit up near the end of my esophagus didn’t look like cancer. They had even used an ultrasound (I think) to look inside the lining of the esophagus and didn’t see anything. “It looked irritated so maybe the reason it showed up in the PET scan was inflammation.” But, he said he had also taken several biopsies and would send them off for analysis.
The tissue analysis (from that needle biopsy) showed that it was cancer in my lung, but that it was not lung cancer, i.e., the cancer that was growing in my lungs was not lung tissue. Instead the tissue markers showed that it was GI cancer, in other words, there was another tumor – the primary one had to be somewhere in my gut. They needed to find it or it would continue to grow and dump cancer cells in my system and grow tumors at other sites. That was why the EGD was necessary.
Nailed It
I couldn’t see that report in My Chart, but at my oncology visit for IV chemo treatment, he told me that the esophageal site was indeed cancerous. And, because of tumor markers, it was determined that it was the exact same cancer that was in my lungs. In other words, I had cancer in my lungs, but it wasn’t lung cancer, but was GI cancer. Nice, I thought. Only I would have some tiny place that didn’t appear cancerous but metastasize to my lungs and fill them up. Go figure. But, at least we knew where the primary tumor was (the esophagus) and that by treating the cancer in the lung we’d also treat the esophageal cancer. That’s a twofer and I’m all for it. Neither of the CAT scans or PET scan (or the EGD) showed any sign of other metastases.
So, that’s pretty much it, finally. But, let me close by noting that the quote from the book of James at the beginning of this entry as it nails it: you really don’t know what your life will be like tomorrow – good, bad, or ugly. I went from being short of breath briefly while still working full time to being out of work in less than 4 months. Hard to believe. As a friend of mine said: “Nobody gets out of here alive” and it is reckless to pretend otherwise.
Sorry, for the lengthy entry, but, trust me, this process seemed a lot longer to me than it did to you.