The Monday Crowd

Tomorrow, I will see my oncologist again. On a Monday. Most of my chemotherapy was on Mondays.

Several other patients also seemed to follow a Monday schedule. As we waited in the for our treatment, or when we were bored with sitting in a chemo chair and decided to walk around with an IV pole, we would chat. We became an informal support group. We talked about our families, and about our disease and treatment. Three of the people had known each other for a while. Two had recurrent cancer, one, a chronic anemia requiring frequent transfusions.

One of the patients with recurrent cancer seemed to be failing his salvage therapy, looking worse and worse each time he came. He had had a long battle, beginning a few years before I met him. During those years, he had quit working and closed his business, putting a few others out of work. But, he had no choice. He just didn't have the energy anymore. He knew that he was nearing the end. I would guess that he has died.

The other was a young woman, first diagnosed with an unusual cancer in her twenties. She had also recurred, but she seemed to be doing well. Her attitude was clearly to live life to the fullest. I haven't seen her for a while, but now only go in twice a year for follow-ups, and often not on a Monday.

The man with chronic anemia I also have not seen, but this could also be due to my schedule.

While I can clearly remember each of them, I doubt that I will learn their eventual fates. While we shared our souls, we did not share our addresses, whether physical or electronic. These people helped me get through chemotherapy. They helped me to survive. I hope that I can play forward what they have given me, and help others through their treatment.

We were "The Monday Crowd." I hope there is a new "Monday Crowd" helping each other get through. And, other groups on other days. 

Survivors

Recently, I looked around at my colleagues, at least 5 of them had had cancer in the past, but were working full time in demanding careers. Other colleagues have had cardiac events. Others had ongoing medical challenges such as rheumatologic diseases. Two of my medical school classmates had multiple sclerosis. One of my professors was quadriplegic. A good friend, my daughter and I were all premies, and all have negligible residual difficulties. Another good friend and another family member have suffered from depression, yet go on with life.
Fortunately, we are all survivors. Yet, we all have preexisting conditions. And, that may put our financial lives at risk (https://www.npr.org/2018/06/08/618263772/trump-administration-move-imperils-pre-existing-condition-protections), and thus, our real lives. We might be forced to pay much higher premiums, or accept a cutout for a potentially expensive disease. And, spend down our savings until we are eligible for Medicare.
No one gets out of this world alive. And, for most of us, death is preceded by illness or injury, which is also very costly. So, elimination of the protection for pre-existing disease will affect most of us. When I was going through active treatment, I became close to several other patients. One had a recurrence of a similar type of cancer to mine. He had lost his business and his house. He opted to not continue with treatment lest his wife be left bankrupt. Another was a young man, a single father. He, too, lost his house and his job. He started driving for Uber on days he felt well enough. A woman, barely 30, was also facing recurrence. She and her husband were struggling to prepare their children for the inevitable. I had costs that would bankrupt most. So far, I am afloat, but, may need to sell my house and downsize sooner than anticipated, before my children are out of high school. Some of this is due to my job forcing me, since my cancer, to continue to work part time, for half the pay I had before. This is also not uncommon, but adds to the financial stress faced by patients.
Facing death is part of the disease. Facing bankruptcy is not. It is a societal cost, which those in no other developed country must pay.

Another year

I will have recently had my five year anniversary. So far, everything is looking good. Markers low, CT/MRI good. I'm working more. Life is more normal in that sense, too. In one way, I can put this disease behind me. But, the experience has permanently changed me and my family.

The experience of cancer, or any life threatening disease, changes how one approaches life. Time with family becomes more important. My children are teens and wanting to develop their own identities. I now know I will likely see them into adulthood. It now seems likely that I may even experience being a grandparent.

My cancer has also affected work. I was limited by my health during treatment by the disease, and now am being limited by the perception of others that I cannot work as much as before. I, too, have changed my perception. Being a workaholic makes less sense, since I feel relationships are far more important. But, now, having spent part of my retirement savings on my time off due to illness, I know I will need to keep working for several more years.

Cancer also affects my sense that I need to continue to have good insurance, as I know I am not invincible. As I see the ACA protections being taken down, I worry not only how this will affect my patients, but how it will affect me. I am still too young for Medicare, and that, too, seems in jeopardy. None of us will get out of this life without the clouds of illness or injury. Unless our society does not value its people, we need to think about this. We need to have a system to care for all of our people. I have seen far too many people whose lives are destroyed, not by the disease, but by the economic disaster that accompanies it.

Triage and the R-word

Recently, I retook Advanced Trauma Life Support. I had been an instructor in the past, but lapsed during my own medical treatment. But, now, back in the trenches, I needed to redo my certification. Since it is geared toward standardizing trauma care, the issue of mass casualties is addressed.  Even with a modern trauma center, a natural or man-made disaster could overwhelm the locally available resources. Traditionally, this was more of a problem for the military, and it was in that setting, during the Napoleonic wars, that the term "triage" originated.

Triage consists in dividing patients into three categories--those with unsalvageable injuries, who will die regardless of care; those for whom treatment will make the difference; and those with minor injuries who will survive regardless of care. Clearly, in the mass casualty setting, attention is directed toward the middle group, with minimal resources directed toward the other two. 

Modern healthcare has become so costly, that a society must decide how to allocate resources. Clearly, an extremely old and debilitated patient will not have a long survival with an aggressive cancer. So, perhaps care should be directed to palliation rather than attempt at cure. This might be kindest, as well as most cost effective.

Similarly, those with minor self-limited issues might be best treated with "watchful waiting" and reassurance. Again, what is best for society is also best for the patient.

The middle group is where the resources should be directed. These are the patients for whom more aggressive treatment will make a difference in outcome. Most infectious diseases have a low cost to benefit ratio, and their treatment is also beneficial for society. Cancer treatment is often costly, but is valuable to the patient and to society if there will be a reasonable length of survival with good quality of life. Recently, I reflected on the dozen or so of my friends who are back working full time after cancer treatment. For us, it was definitely worth it. But, I don't know if I would have wanted to go through it at age 90.

This sort of allocation is gradually becoming more accepted, as people are not wanting heroics as much near the end of life. But, still, nearly half of our health care expenditures are in the last month of life. If we, physicians, could do better at prognosticating which of the groups a patient would fall into, we would be better able to discuss potential outcomes, and guide patients and their families through end of life decisions. I am convinced that this lead to better outcomes for both the individual and society.

We are not Islands

As another hurricane has hit Texas causing flooding and loss of life, I think it is important to look at how we, as a society, treat the less fortunate.  Texas declined the medicaid expansion of the Affordable Care Act, and so its citizens are chronically at risk. This morning I read a review by Danielle Ofri, MD, of the book, "No Apparent Distress," by Rachel Pearson, MD (https://www.nytimes.com/2017/08/25/books/review/rachel-pearson-no-apparent-distress.html?_r=1).  In it, Dr. Pearson's stories about those who fall through the cracks are described.

I have spent most of my career working in "safety net" hospitals. Yet, even here, there are requirements for copayment. In the case of scheduled surgeries, copayment may be required in advance. Sometimes, this may be more than $2000. Clearly, a fee this high might cause a patient to question if they should wait. And many do. Sometimes, the disease will progress, and be more costly to treat. But, this usually affects primarily the patient and their family. And, often the taxpayer.

Medical diseases like diabetes and hypertension can also be far more costly if treatment is delayed. A common medication for hypertension costs less than $10 per month, yet a hypertensive brain hemorrhage may require a week in ICU at over $2000/day, followed by weeks of rehabilitation, and perhaps never returning to the pre-hemorrhage level of functioning. And, at the time of the hemorrhage, care is mandated by EMTALA (the Emergency Medical Treatment and Active Labor Act). So, again, we must all bear the increased costs of delaying care. While this is an unfunded mandate, doctors and hospitals must either recoup the costs or decide to go out of business, so they don't need to provide the care. But, closing Emergency Rooms affects anyone who needs one. So, this may affect all of us.

Infectious diseases pose even more of a threat to all of society. When I was a medical student, many of the homeless had been exposed to a non-toxin producing variant of diphtheria. Thus, if the typical toxin producing variant developed in the area, they and those who had received the DPT vaccine (https://en.wikipedia.org/wiki/DPT_vaccine) would be best protected. Since a booster is recommended every 10 years, many healthy adults would be unprotected simply because they didn't keep up with revaccination. But, this is just theoretical.

About 20 year ago, I took care of a toddler who had tuberculous meningitis. He was neurologically devastated by it. His infection was traced to a daycare provider with a chronic cough. This worker couldn't afford to take time off to spend at least half a day at a public clinic to have the cough checked out, so continued to work with children, who are the most likely to be devastated by tuberculosis. And, yet, how many of us pay for childcare? And, do we always check on the workers? Since these workers often are low paid, many are immigrants. 

Cysticercosis is another disease that may spread from the less fortunate. It is a pork tapeworm often encountered in third world countries. But, humans can have both gut and tissue, such as brain or eye, involvement. The gut involvement is caused by eating infected meat. The tissue involvement is caused by eating infected feces. Yet, pay for both agricultural workers and food service workers is low, so many are immigrants. In the field, workers may have no toilet facilities or bathroom breaks. Food service workers may also not have optimal hygiene. Health education is scant for such occupations with low pay and frequent turnover. Testing and treatment is rare. So, such workers may not only have tissue involvement, but, also gut involvement. So, all of us are at risk. In 1992, several Orthodox Jews were reported to have cysticercosis (http://www.nejm.org/doi/full/10.1056/NEJM199209033271004#t=article). 

We do not exist as islands. We interact with other people. We may eat meals prepared by others. Our children may be cared for by others. The most affluent may be able to have their domestic help tested and treated for various infectious diseases. Less affluent people likely can't insist on this. But, most of us, at least occasionally, eat food grown and prepared by others. So, if the least fortunate can't afford care, the more fortunate may also suffer. It is not only ethical for a society to help the less fortunate; it is also beneficial for the more fortunate.

Looking forward or looking back?

Today I had my, now semi-annual, visit with my oncologist. He ordered the usual surveillance labs and other tests. I have learned that some of these go through easily, some mean phone calls to my insurance. These phone calls are a nuisance for me. But, as a physician myself, I know how to phrase the reason so that things are approved. I know this is far easier for me than for an average patient. Yet, I worry that things will be harder in the future.

Every cancer patient has a pre-existing condition, as does every premature child, mental health patient, and many others. Before the Affordable Care Act (ACA), that meant that every person with a pre-existing condition could be denied coverage, forced to spend down their savings, and finally fall on the mercy of Medicaid, which differs some in the various states. They might then be limited in choices of providers. They finally would need to go to those facilities that are termed "safety net" hospitals.

I have spent most of my career working in safety net hospitals, teaching the next generation of physicians. I know we help a huge number of patients. And, we provide quality care. But, we sometimes lack in some technologies because we try to function on a shoestring budget. With the ACA, things eased a bit, since more of our patients had funding. But, still, not all technologies are available. In my case, my hospital did not have the ability to provide care had my disease turned out to be slightly more advanced. Yet, we often see patients with more advanced disease since they have tended to wait for care, if only because they might have to take a day off work due to travel time and waiting time, and so wouldn't be paid for that day. Even now, many patients miss appointments just to avoid taking time off work.

Waiting to see the doctor or have a test allows disease to advance. That makes it more costly to treat, and treatment less likely to be effective. Yet, plans are being made to force patients to have "more skin in the game" by forcing them to have higher costs when they seek care. Poor patients currently have relatively higher costs. So increasing their costs will force further delays in needed care, and so make US health outcomes worse. Last year, when life expectancy fell for Americans, poor Americans already had a life expectancy 14 years less than richer Americans (https://www.nytimes.com/2016/12/08/health/life-expectancy-us-declines.html). So, poor people have been putting their lives on the line with their health decisions.

Fortunately, I am able to have insurance and to argue for the care that I need. But, as a physician, I also have sworn to care for my patients, and will are for their care. And, I feel all people deserve quality health care. It is not a luxury, but a necessity.

Thanksgiving

Four years ago, about this time of year, I began to notice more abdominal problems than I had before. I put it to the back of my mind, and continued on, with work and family and friends. I had no idea that a little time bomb was causing this. I thought that maybe I overdid on eating more things that irritated my stomach. Especially this time of year. 

But, at the end of January, after another special meal for my daughter's birthday, the pain became more persistent. Still, I carried on for a few days, thinking it would pass. Finally, it was to the point that I could no longer avoid it. My little time bomb had exploded. My appendix had ruptured. And, so, my saga as a patient had begun.

Still, I thought, a couple weeks and I'll be back to normal. No, the little time bomb wasn't going to let my life return to normal. I had a drainage procedure and antibiotics to quiet down the ruptured appendix. Then, an appendectomy. This was even an option, as sometimes, appendectomy is not done after quieting down appendicitis with antibiotics. I decided that I wanted it out. I remembered a similar, far less severe episode years earlier. So that was scheduled. But, after things had been quieted with antibiotics. Only then did the little time bomb reveal its true nature. It wasn't simply appendicitis. It was cancer.

Even appendicitis isn't simple, though most of us in the developed world now regard it as a simple, treatable disease. When my symptoms began, I was only one year shy of the age of my grandmother's death from appendicitis. Hers had also ruptured. But, she wasn't so lucky. There weren't many antibiotics in her day. She became septic and died due to the infection. Now, that is less common. Antibiotics can treat many diseases that used to be fatal. But, the bugs are getting smart. We may again be at risk, or have to tolerate increased side effects from the drugs we use to treat infections.

But, back to me. After my appendix was removed, I had to undergo a bigger surgery, and then chemotherapy, because there was evidence of spread at that time. But, January will mark three years since the end of chemotherapy. I remain disease free. And, that is definitely something that I am thankful for today. I am also thankful for family and friends who supported me through this ordeal. And, thankful for a job that I could come back to when I was able. And lastly, I am thankful for the advances in medicine that allowed me to survive something worse than what took my grandmother's life.