After defying all odds and going through the medical procedures, I have gone through to get here, I find myself in an unexpectedly dangerous place. To quickly recap, I was given little chance to live when I was first diagnosed with Peripheral T cell Lymphoma in early 2018. A few issues made my cancer incredibly unique. First, it is extremely rare, so there has been little research done on effective treatment options. Second, it was moving horrifyingly quickly and evolving to survive chemo as I was getting treated like a having creature from Science Fiction living inside me, tearing me apart. Third, it always returns quickly and worse each time, so a cure would involve taking any measure to get me into remission and quickly destroying my immune system and replacing it with a new one to keep me alive. There was no data or safe options. This would be making up the book as we went and throwing a Hail Mary.
After my last stay in the hospital last December, I have been doing very well. I was feeling, “cured.” For the next five years, my new immune system might go through some problems and be carefully adjusted until it can function on its own. But anything can be handled with the correct information and decision making by my highly specialized and passionate team. I am out of imminent danger, or so I thought.
In my last blog, I expressed fear about some new potentially dangerous symptoms, but I have been responding to treatment well. My eye GVHD is under control; I will not go blind. Other neuro symptoms are being investigated but so far, so good. Everything was under control until yesterday when I had a very frightening day. It shocked me to my core.
Because of my intimate awareness of my fluctuating immunity, I have been a little more concerned about COVID-19. If I get it, it would be bad. Sanitizing everything, mask-wearing, and seclusion have been a way of life for me since early 2018. When we hit our first spike last Spring, and I heard discussions that if there were patient choices to be because of shortages of equipment, I would probably not win that one. I had too many high-risk factors.
But then things seemed a little more in control. I have been angered by the public and our officials not completely putting the hammer down to get this under control. I have been impatient with people and officials not following expert medical advice and making the problem worse. I have been mystified at how many people think this is fake or exaggerated. I have been deeply saddened to see not wearing a mask become a patriotic statement in some people’s minds. I have worried about all our medical professionals many of whom I have become very close to. I have wondered if our educational system had stopped teaching the difference between following evidence-based options and craziness. How to vet sources. I remember getting classes on this in High School. Where did that part of our education system go?
But yesterday, I witnessed a dramatic change in options for care for everyone. Because of what has happened in just the past few days, we are now in a completely different crisis than COVID-19. It is much worse. I do not think the public realizes this at all. Certainly, new guidelines being issued by officials will do nothing to control this. They need to see the new environment. It is a public health environment that impacts everyone with all medical concerns. All the back and forth on mandates and masks, and if COVID-19 is real, and who to believe, has become completely irrelevant. It does not matter at all right now. COVID-19 is causing the new problem, but it is not what we need to address immediately.
I am extremely familiar with Northwestern Hospital in Chicago. In 2018 I made trips 87 different days for treatment. In 2019 I was there 108 days to be closely monitored and get my new baby immune system adjusted, as necessary. This year I have started getting my infant immunizations all over again. I know people well in all departments. They know me very well, and I have grown close to doormen, receptionists, billers, nurses, doctors, technicians, specialists. I am the one they got it right on. They are incredibly happy to see me. I make them proud. I am their big success, that they went to extremes for me and invented protocols that worked. That is not always the case on the oncology floor. I motivate them to keep at it and take the necessary risks. Because of my success, I have changed the treatment options for anyone ever getting this disease in the future. I was safe; until yesterday.
Yesterday should have been routine. I was just going to get a test done in the morning, some lab work, and a COVID-19 test, which was required for a lung function test I am supposed to get Friday. But I saw giant red flags immediately. Other people may not have noticed, but I sure did. First up was my drive through COVID-19 test. In the past, this has been a short line of cars and people on feet moving quickly. This is a testing site that is not available to the public. You need an order in their system from a doctor. Yesterday the line snaked around several blocks of downtown Chicago taking up a full lane on multiple streets. There was traffic control now. The walkers were separated. There was about ten times the normal medical staff doing their best to move the line. It took hours. They looked completely exhausted and defeated. I asked them if this was different than the initial Spring surge. They told me that was nowhere even close to where they are now. There was no comparison. They told me they could not keep up. This time greater and greater numbers of medical staff are getting sick, so not only has the curve taken an unprecedented spike up of need, simultaneously they have fewer professionals available for ANYTHING in all areas.
The next clue I got was the normally over packed parking garage had many, many fewer cars. This happened in the Spring when suddenly all non-essential treatments in all areas were postponed focusing on responding to Corvid’s needs. It was not like this just last Friday when I was there. I started questioning some fundamental thinking most people and officials have right now about healthcare and saw it is completely wrong. At one level or another, I think most people make a few assumptions despite their polarizing opinions about this pandemic. Underneath it all, I think the public generally feels they will come out of this OK. Some may have shown varying levels of concerns for others that have driven their choices. They may be concerned about the weak. But if you are healthy, you probably would not get too sick. If you did suddenly get ill, you could just go to your local hospital. If you need access to more intensive care, you can be moved to a major hospital where you are confident you would have access to whatever care you need. Local and State governments will not let things get too dire. They protect us. We are safe. So we have been falsely confident. These assumptions are now wrong. Many have been reassured about access to care by watching constant statistics about ventilator availability and ICU beds available. It struck me these statistics we have relied upon are meaningless. It does not matter if their tons of ventilators and beds are available if there is no one to use a ventilator or provide urgent care. We should not use these counts to inform our evaluation of our safety. If you turn up at many hospitals in the country right now, you have a particularly good chance of being turned away, for ANY medical problem. It is hitting everywhere now. We will not be able to send help to hot spots. This is no longer a COVID-19 problem. We are in serious public danger and not aware of it.
I had my previously scheduled test without much delay and got my labs done and went to consult with my care team. This was when things got unbelievably bad. I had been getting increasing shortness of breath. Monday, my team thought I probably had lung Graft vs. Host disease. Something that was significant but not too hard to control with immuno-suppressant drugs. It was a pain, but I would be OK. Then we got some results showing this was not GVHD, and potentially could be profoundly serious and require swift care and access to equipment. But it was most likely solvable. I would be OK.
This is where the other safety net drops.
Because I was by this time completely out of breath and could not recover even sitting still, we realized we needed to figure it out soon. Although I could not breathe, I had perfect oxygen levels. This could indicate many possible conditions that would potentially need to be responded to. My doctor wanted to admit me immediately. Because of my extremely specialized care needs, I usually get admitted to a special floor reserved for immune depressed stem cell patients. It is never full. Usually, just a few rooms are being used. My doctor’s office room suddenly filled with doctors and schedulers, and nurses all simultaneously speed dialing and paging every possible resource. Everyone was calling in every favor, begging and pleading, trying to get me any room, trying to get me a lung function test, trying to reach cardiologists and pulmonolotists. And they were getting no replies of answers saying they were so short-staffed all options were beyond the max capability, and there was no way I could get the information of treatment that I may need to save my life. I was at high risk for blood clots, heart attack, stroke, among other possibilities. We are not talking COVID-19 here. I am no longer safe.
You are no longer safe. I know I can need access to a ridiculous number of Professionals and services. But I am marked as the highest priority for care. I know and accept I am in a danger zone. I have made peace with that long ago.
My fear is what you do not know. How this can impact everyone. How vulnerable everyone is. The decision-makers we count on do not know. I am terrified for my community and my country. If despite every possible connection and priority I have, I could not get a room, a cardiologist, a pulmonologist, skilled care, an MRI, a CT scan, tests to see if my heart and lungs are working at one of the best equipped hospitals in the country; If I can’t count on this access, can you? What is about to start happening? Has all urgent care become unreliable because there simply are not enough resources? Our assumptions are wrong, no matter what your views about the pandemic are. Statistics and attitudes about availability are no longer relevant because the people that provide this care are sick at a much high rate than ever before.
The solution has become stripped of all confusing and controversial arguments. It has become very simplified and clear. We need to respond to code red status with immediate code red solutions. I am not advocating long term closures of mandates. But we must do everything we can to pause this. We need to shut down as completely as we can, as quickly as we can, and give our medical infrastructure a chance to recover and re-group so we can rely on them again. It may only take a few weeks; then, we could again return to gradual reopening.
We need to recognize this shift. This is no longer about Covid.
Exercises in Equanimity 