I’m here to unload the contents of my brain after a dizzying few weeks. We have regime change at last, but it came too late to avoid a violent insurrection. We have lost half a million people to the pandemic whose year mark is fast approaching (for us, isolation began March 13). Texas froze over. A new Mars rover is roving. And I have a brand new diagnosis.
Although an immediate end to pandemic suffering is still not in sight, in my small sphere, I am happy to report Mom has gotten her first dose of vaccine and the second one is coming at the end of this week.
Another thing that happened in recent weeks is that I had my very first ctDNA blood test. ctDNA is a fairly new method of detecting tiny particles of circulating tumors in the bloodstream, and it is seen currently as an additional method for following up cancer patients. Perhaps one day, this “liquid biopsy” will become the standard of care for cancer survivors. I’d love to give some blood in lieu of the poisonous contrast dyes I get injected with every scan cycle (not to mention the radiation exposure). The good news came after about a week — my blood harbors no particles of tumors in it. Cool!
In recent weeks it was time to deal with other issues as well. After suffering digestive discomfort since last August, I was referred to a gastroenterologist to see what might be going on. An initial test indicated I’d need more testing, so at the end of January, I underwent my very first colonoscopy and endoscopy. As everyone who has been through these procedures knows, the preparation is the worst. I couldn’t agree more. By the time I arrived at the hospital, I was so ready to be knocked out, I was a walking Ramones song.
All was well until I woke up, reasonably clear-headed, and drank some cranberry juice. Once I’d gotten dressed, I waited in a chair for Dr. C to come speak with me. We had met once by video (an appointment to which she showed up one hour late; when I mentioned it, she snapped,”well, they added you to the schedule last minute” — so, clearly, it was my fault?!). This time, she walked up, said, “It’s Crohn’s, it’s probably not related to the immunotherapy treatment you had, my office will call you to set something up.” And then basically turned on her heel and went off to the next patient.
I woke up from anesthesia to a new reality: my new doctor simply did not have time to be humane, or human. I was a little unsteady, and they wheeled me out (hospital policy) to where J was waiting with the car. As the fog lifted, I found myself enraged. Nothing in my medical history thus far had prepared me for an encounter with such a highly-rated and at the same time poorly-behaved doctor — this was certainly not the kind of stellar care I received from Dr. P and her staff of angels (who probably ruined me for other doctors, with their unflagging commitment and compassion).
Dr. C’s office was not, in fact, calling me. I had to send several messages through the hospital portal before I heard back. In the meantime, it was easy to find evidence online of patients who’d had bad experiences with Dr. C, and also copious evidence of her engagement on Twitter. She’s apparently much more excited by doing continuing medical education for her peers than she is by treating actual patients.
But no matter, because I had already done my research and found a doctor at a practice closer to my house, Dr. O, whose video introduction on YouTube showed a practitioner who is patient-focused, who listens. I spoke with Dr. L over the phone, and he agreed I should switch to Dr. O.
Somewhere in the past few weeks I also saw Dr. H, my retina guy. Things have quieted down enough that I’m down to one steroid drop in my left eye every two days. I hope things stay quiet. At the end of my visit, I mentioned to him that I’d be going to see Dr. B, an ocular immunologist at Hopkins, to whom I’d been referred by Dr. C, the rheumatologist I consulted with a while back. I couldn’t be sure, but I sensed Dr. H was maybe a bit snippy when I told him I’d be seeing her. Whatever.
I drove up to Baltimore last week, the day after an ice storm. The parking garage I had to use was the same one we parked in when my father was dying. I still remembered my way around the hospital, unfortunately.
The visit to Dr. B was a wonderful experience, with kind and professional staff and state of the art equipment. I wasn’t expecting the number of tests that she’d conduct, but it made sense — I’m a very special snowflake in terms of the damage done to my eyes by my medication. Dr. B has about twenty patients on her roster who are, like me, dealing with the ocular fallout of immunotherapy or other cancer treatment. Her nurse asked me whether I was a nurse. Apparently I used quite a bit of terminology. (I’ve picked up some lingo in my long career as a professional sick person, I guess.)
Dr. B showed me images of the blood vessels in my eyes. Due to the extended inflammation in my eyes, the most peripheral areas no longer have blood flowing to them. It isn’t affecting my vision significantly, yet, but it’s very important to avoid any further inflammation. I drove the hour home with my pupils dilated, just as the sun decided to make its appearance after many days in hiding.
I did have a followup with Dr. C after my procedure, by the way, at which she laid out what she proposed as a treatment for the Crohn’s. She suggested starting with an older, oral medication, sulfasalazine. She intended to start me on a lower dose to see how I tolerated it, and then increase it. At the end of our chat, I informed Dr. C that I would be transferring my care to Dr. O. She was fine with it, but indicated that in that case, I should not start medication until I’d established care with my new doctor.
Here’s where I wonder aloud something I’ve been thinking about for a while: I have been a cancer patient for a long time now. Come April, it will be eight years. Has this prolonged experience with life-or-death situations made me an impossible patient to treat? I don’t even mean because of the multiple conundrums I bring to my caregivers. I mean because maybe having had cancer automatically makes you much more demanding? More uncompromising in terms of what behavior you will accept — or not accept — from your doctors?
As I settled into my new diagnosis of Crohn’s, a condition that is hardly mysterious and which many people around the world cope with, perhaps I was even, just a little bit, missing the urgency, the sheer drama of cancer? Obviously I have no desire to return to that type of drama. But the fact is, it’s what I know best. The idea that I could have a newly discovered chronic condition and not start meds for it right away was unnerving to me.
But Crohn’s is also a bit unnerving. Your digestive system turns against you at age 49? Just like that? Sometimes you’ll be fine and sometimes you’ll feel awful? As pointless as Googling my condition was when my cancer metastasized, so too is it pointless to try to Google what to eat or not eat when you have Crohn’s. It is highly individualized. Really no general guidelines beyond not eating too much at a meal, and what foods might help when you’re having a flare.
I couldn’t have imagined the timing of my visit to Dr. B in Baltimore and my first video call with Dr. O was important, but it turns out to have been. One of the things Dr. B made very clear to me was that starting sulfasalazine, as Dr. C had suggested, would probably not be a very good idea for my eyes. She asked to be put in touch with Dr. O to discuss my Crohn’s medication options.
This week, I met Dr. O. Her office had already impressed me by making sure they had all the records they needed before my appointment. Dr. O listened intently to me and asked questions to clarify. She admitted she wasn’t familiar with targeted therapy, so I explained it to her. She took many notes and planned to correspond with my many doctors, and most urgently with Dr. B. She prescribed probiotics, but warned me my insurance might not cover them. Sure enough, within an hour of my appointment, the pharmacist called to let me know the script would not be covered. But Dr. O did not leave me hanging. The pharmacist read me a note she’d added to the prescription, saying that in the event I couldn’t get what she had prescribed, I could use another, over-the-counter one.
It’s the little things, like that one, which build a patient’s trust in their doctor, because it meant she cared enough not to leave me hanging. It’s gestures, too — I saw Dr. B wiping down the chair in the exam room herself before I went in. That small moment showed me that she was more interested in just getting her patient in to see her than in feeding her ego by pulling rank and waiting for a staff member to do it.
I appreciate these things. I appreciate humanity in my caregivers. I think they appreciate my professionalism as a patient, which is definitely a thing I’ve had the opportunity to hone over the past eight years, particularly when my response to meds has gone off-script and produced side effects that very few people get and even fewer doctors see.
While I wait to start whatever meds are deemed appropriate for my Crohn’s and also for my eyes, I paw my way through my days with very little energy. This winter has sapped me of my last ounces of strength, motivation, and drive. I’m starting to look around and discover that there are a lot other people feeling this way, too: stuck, without energy, sapped of strength. It’s like a second pandemic, one of inertia.
This is what happens, I guess, when you internalize fear and stress for an entire year. When the very air molecules at the grocery store could be loaded with dangerous virus. When grandparents can’t hug grandkids for way too long. When kids only know their teachers in two dimensions (or maybe just one) and as a result feel zero accountability to them (and to the parents who keep trying to get them to be accountable). We just can’t go on like this, but we have no other choice. So we take a moment to look to our right and left, and notice everyone else is also lined up against the same wall we have hit so many times now. It doesn’t have any give, this wall, but we are all hitting it together. For now, that needs to be enough.