I Became a Cancer Patient, But Was Misdiagnosed
In November of 2017, I had a negative CT scan of my chest. It was to make certain that my lung cancer was not returning. I previously had lung surgery for stage 2 disease. I was also completing a prophylactic course of chemotherapy.
One of my chemo drugs gave me severe nausea. I had been given five different drugs to try to decrease the nausea. None of them helped. An OB/GYN friend brought me over some edible chocolate marijuana blueberries. My nausea resolved.
I decided to enter a clinical study. I would be given a drug or a placebo to see if there were fewer recurrences in those who received the medication. Of course if I had side effects from the drug I would know I was not receiving the placebo.
Unfortunately, your mind can play tricks on you. Just learning the possible side effects of a drug can give you those side effects. I am an Ob/Gyn physician. I remember once preparing to start a repeat cesarean for a patient. She told me that she was allergic to penicillin and the antibiotic I was giving her was a cousin to penicillin called Ancef. I reassured her that I had given it to her in her first cesarean and she did not have any reaction to it. She then insisted that she was already itching from the Ancef. I told her that was interesting as although her IV was in, we had not yet injected the medication. We both laughed.
Just before starting the study I started coughing up blood. I jokingly said to my wife, “The best thing we can do in a situation like this is to ignore it and hope that it goes away.”
I had to have a new CT scan to enter the study. After the scan I received a phone call from my oncologist. He explained to me that there were now multiple lesions on both lungs that had the appearance of metastatic lung cancer. My original cancer had only involved my left lung.
The floor fell out from under me. How could my disease be progressing so fast? My wife was in total shock although I was somewhat prepared for bad news as I always consider the worst possible outcome. If the worst then happens, I am somewhat prepared and if it doesn’t, then I am relieved. I would do this whenever I would receive a message that the CEO at Sutter Solano Medical Center wanted to see me in her office. I would always assume I was getting fired and that way I was always relieved at the end of our meeting as that has never been the case — so far.
At my next office visit I expressed my desire to go on the new drug as soon as possible. I asked my oncologist how long I would stay on the drug. He replied, “Forever.” That surprised me. I asked, “What if after ten years there has been no recurrence?” He looked at me and I immediately knew the answer to my question. Patients in my situation don’t live ten years.
Although I had already completed my course of chemotherapy I was still physically wiped out from it. One day while resting on the couch, I fell over on my side due to weakness. I found this was actually a comfortable position to rest in.
I did not want to leave my children and my two year old grandson. For some reason he was very fond of me. In a crowd he would search me out to hold my hand. Maybe he had a premonition that I would not be there to see him grow up and he was making the best of our time together.
My wife knows that I love my calico cat named Peaches. Each night I hold my cat after dinner. Each night I tell Peaches not to snag my clothing and each night she does it anyway. One day my wife told me that she had a great idea. She was going to have Peaches put to sleep when I died so that she could be buried with me. I was appalled. I told her in no uncertain terms that my cat was to die a natural death. My wife did not agree with me. She ran the idea by her friends. To my shock, her friends also liked the idea. I told my wife that her friends needed psychological counseling.
My wife told me that she did not want to live the rest of her life without me. She did not want to have to drive to family events by herself. She cried. I held her. I did not know what to say.
She told me she would cry more but she did not want to upset me. I told her that I was also upset but was grateful for the full life that I had enjoyed with her and our children. Nature only requires us to live long enough to raise our children. At least we are not like the salmon who spawn and then die immediately after.
I asked myself, “Why me?” I get adequate rest and I exercise every day. I used to be a Seventh-day Adventist and have been a vegetarian most of my life. I have never smoked nor do I drink. I asked, “Why me, why not Sean Hannity?”
I do not tell all my friends that I now have stage 4 cancer. They tell me how healthy I look. Ned is one of my best friends, who will be told that I have passed away. He will say, “That is impossible. I just had dinner with him and he looked great.” I should leave him a note that says, “Ned, thanks for being a great friend. I didn’t want to worry you with the details of my illness.”
Fear overtakes me as I realize that the new drug costs over $12,000 per month and I did not sign up for Medicare Part D (the part that pays for drugs) properly so I won’t have coverage for medications for over a month. How can it be so difficult to sign up for a program that was designed for the masses? I enjoy thinking about MedCare or any humorous subject that distracts me from my illness.
At some point during the year Medicare feels that you have been getting too good of a deal from them. By the time you and Medicare have paid $3,750 for your drugs, you will now have to start paying a much larger share of your costs. This is called being in the “Donut Hole.”
MediCare then has remorse for making you pay so much money while in the “Donut Hole.” Once you have spent $5,000 out of pocket you now go back to paying just your copay or coinsurance.
My UCSF doctor ordered for me a body PET/CT and a brain MRI to see if the cancer had spread even beyond both lungs. The UCSF finance office called me. My two scans were going to cost me $27,000. All medical institutions have outrageous charge master charges. They are hoping that someone will actually pay those charges, and some do. I quietly ask for a cash discount. The charges are lowered to $5,000.
My doctor sends me a message: “Hi Gary, I released the PET-CT results to you. Both lung nodules are smaller, which is more consistent with infection….”
I ask my wife, “Does this mean I am not dying?” Kathy wept.
Some of my friends have asked me if I am unhappy with my doctors for not getting my diagnosis correct. I believe in my doctors. I would probably be more critical but in my own career I have also many times been confused with a diagnosis. This is the life we chose: the practice of medicine.
Someday death may stalk me again in the form of lung cancer but that day is not today. I have read that those who have had a near death experience become less materialistic and more interested in leaving this world a better place. Later as I am driving home in the rain from my doctor’s visit, I reflect on the fact that I drive a Mercedes. I realize now it would not matter to me at all if I had to instead drive a used Hyundai Excel. Actually, at this point I would be fine with walking home in the rain.
Dr. Gary Matsumura is an OB/GYN physician in Fairfield, CA. He is married and has two adult children. He is completing a non-fiction book called: Adventures in Obstetrics. He reports no conflicts of interest.
