Today, February 4, 2018, is World Cancer Day. As a coincidence, I was just released from the hospital yesterday after suffering complications from a treatment related to my cancer diagnosis. First, my commentary, then for those who are interested in the gory details of what put me in the hospital, be sure to read to the end.
My hospital experience was a mixed bag. My needs were met, but I’m still confused about the approach and some of the tests performed. More than anything I am frustrated that I felt like I had no voice; that my concerns and opinions were of secondary importance. I think Al feels that his voice was even more distant in the ears of the medical professionals. We spent some time talking today about the experience and how hospitals have changed in the nearly 40 years that we have been in careers that at least relate to medicine. It caused us to pause and wonder if it is not at least part of the issues with career satisfaction in medicine. Medicine has become such a business that those who practice one of it’s many disciplines as a matter of calling can easily be lost. We approach patients as diseases and attempt to treat them with protocols based on lab values or x-rays or reports from a third party. Treatment decisions are often based on what JCAHO requires or what insurance will pay for. I’m not saying that these things are irrelevant, but when did the business of medicine become more important than taking care of a patient? When did the vulnerable human being sitting in front of the nurse or doctor become invisible? When did we become so busy that if something is outside of our expertise it is shoved to the side while we look for an alternative narrative that fits our comfort level? When did we decide it’s okay that if you really care about someone you will never leave them alone to fend for themselves for more than a few hours even in the best of hospitals? In my 4 days of hospitalization we had interaction with 5 different physicians, one in the emergency room, 2 internal medicine physicians, and 2 oncologists. The oncology visits, more out of courtesy than anything as they were not directly involved in my care, I will largely discount, except to say that my personal oncologist demonstrated actual interest in my current state of health and we had short discussion about how to proceed going forward; the covering oncologist was more of a cursory visit. The ER physician and staff generally focused on key words and lab work to the exclusion of considering what was, to me at least, the most plausible explanation for the current state of being. My attempts to clarify misstatements fell on deaf ears. The first internal medicine physician, presumably a hospitalist, was much the same and basically ordered more tests. I am happy to say that the second internal medicine physician, also presumably a hospitalist, actually listened to what I had to say; considered my narrative and looked at me as a human being that consisted of more than the sum of my lab values and test results; who actually did research on a medication that she had limited experience with. Of the three, she also happened to be the only female. I will grant the ER doctor some slack that I was clearly in crisis. I will also point out that he was undoubtedly utilizing hospital protocols to treat lab values. Medicine 101: pay attention to the patient in front of you, the symptomatology that is present, and the entirety of the picture; do not dismiss simple explanations in favor of more complex or far-fetched ones simply out of lack of experience with the problem at hand. I felt like I had a lot of unnecessary tests because of improbable scenarios of what might be causing my symptoms and possibly received less than optimal treatment what all finally agreed was the actual problem – a severe and unusual reaction to a medication.
I found similar ranges of interest with the nurses. Some demonstrated clear interest in me as a human being and delivered great care on every level, others demonstrated adequate interest to get them to the next problem, the next patient. I did not stand in their shoes, so do not know what other challenges they faced or how they differed from one shift to another, but some were either self-important because they were nurses and some work was nurse-assistant work or it’s just a job to them, while others were there to see that I, as a patient, had my needs met to the best of their abilities. The differences in their approaches were notable and I believe they had an impact on my recovery.
A few more thoughts before I leave this diatribe about the state of modern healthcare. Hygiene, beyond toileting, was never addressed. If I was not able to shower, then apparently there was nothing to be offered. Oral hygiene was apparently also of no concern. I will add to this that one of my suspected, and initially treated diagnoses, was probable sepsis. I was not able to move myself and there was no effort made to reposition me, perhaps because of my pain level. I had skin symptoms that were never addressed by anyone, though they were repeatedly pointed out and examined and commented on as puzzling. I expressed repeated concern about the use of narcotics without some concomitant treatment to prevent/treat constipation which were completely ignored until doctor #3 entered the picture and by then it had over 48 hours. All of these things have an impact on patient comfort levels and potentially on outcomes. But there are no protocols to treat them, no JCAHO requirements, no big brother watching over our shoulder. The only requirement to address them is an ability to put oneself in the patient’s place and demonstrate compassion in the delivery of care. How much of this is due to changes in how care is delivered? Nurses used to work shorter shifts more days per week, had fewer patients to care for, came to know their patients better, and had the opportunity to see patient’s improve as a result of their efforts. Physicians followed a patient throughout their stay and most likely had an existing relationship with the patient, rather than seeing a patient once for a few minutes during their entire stay and on the basis of those brief interactions making major treatment decisions that could change the course of outcomes. Al & I could not help but wonder if the lack of continuity in care is not part of the problem. I cannot say that I have the wisdom to offer any answers, only that I am full of questions. Our national debate about the Affordable Care Act aka Obamacare and calling that healthcare reform is a joke. It has nothing to do with healthcare, it is about perpetuating the system while spending the least amount of money possible. We are so involved in our partisan fight that, in my opinion, we cannot see that we aren’t even having the right conversation. I offer this as food for thought. Maybe you agree with me, maybe you don’t, maybe you never gave it a thought, but you are entitled to feel the way you feel. I am curious if anyone is actually satisfied with the state of healthcare in America.
Diatribe finished. For those who want to know, here is my version of recent events. During my most recent visit with my oncologist one of the topics we discussed was whether or not it would be suitable to add a medication called zoledronic acid (brand name Zometa) as an IV infusion every 6 months. In short, zoledronic acid belongs to a class of drugs called bisphosphonates, used primarily to treat osteopenia & osteoporosis. This is an injectable form of drug that is also used to treat bone metastases. Recent studies in post-menopausal women who have had breast cancer and are being treated with an aromatase inhibitor, its use should be considered because it helps prevent bone breakdown and has also demonstrated a decrease in the incidence of bone metastasis. Since I fit all of the criteria based on my breast cancer and had 34 positive lymph nodes it seemed a reasonable choice to add as an IV infusion every 6 months. My bones are still in the healthy range based on bone density scans, but I certainly have chance of developing metastatic disease. Why not add this to the arsenal to fight against that possibility?
On Tuesday I had my first infusion. I did everything that one should do; I made a point to be well hydrated and continued that up to the point I was getting ready to go to bed. I pre-medicated with acetaminophen before my infusion and took some ibuprofen early in the evening. Then around 9pm I decided I should get ready for bed and the last thing I did before retiring was go to the bathroom. I was having some mild bone pain in my spine and ribs, a well known side effect of zoledronic acid, and the reason for the acetaminophen and later ibuprofen. But when I went to stand up from using the toilet, I had a major muscle spasm in my back. It was kind of scary, but muscle spasms are possible, so I figured the ibuprofen would kick in and I would fill fine in the morning, so made my way gingerly to bed. But I continued to have spasms and they got worse. It took everything I had to make it to my hotel door – I was staying in Dallas because of work – and undid the safety latch because by now I knew that I was in trouble and was planning to call an ambulance. I called Al first. It was about 2am and he did not answer but he called me back immediately. We spoke briefly and he said he would come down. I told him I would wait and we could decide together if an ambulance was necessary. I was not able to dress myself completely, but I was able to get to enough clothes to at least start the process. I called the front desk and informed them of his impending arrival and asked them to give him he key to my room. One he arrived, Al helped me finish dressing enough to leave the room, obtained a wheelchair from the hotel, took me to the car and then to the ER. The transfer was not pretty, but we got there and I was quickly brought back to a room. The spasms continued pretty much anytime I moved. This was not your normal every day muscle spasm. This wrapped across my back and into my ribs and made it impossible to breathe until it was over. It was off the chart painful, not to mention more than a little terrifying. Once they had a pulse ox on my finger and I had a spasm it dropped my oxygen saturation level so low that they put me on oxygen. Then the theories began. One that I cannot blame them for is the potential for sepsis – initial lab tests showed an elevated white count and elevated lactate among other things, both signs of sepsis. Two IV lines were inserted and antibiotics and fluid bolus was begun. However, because they focused on the pain and not on the spasm, they also did a renal ultrasound to rule out kidney stones, which still makes less than no sense to me. Along the way it was conjectured that it could be a urinary tract infection (UTI), which is not an uncommon source for sepsis, and the initial urine tests had shown a few white cells, a sign of a UTI, so a urine culture was ordered. Somewhere in there all the fluid caught up with me and I had to go to the bathroom, but since I couldn’t move much was as painlessly as possible helped onto a bed pan. Ever try to empty your bladder while laying on your back with seven people in your room? wouldn’t recommend it.
Once I was admitted and taken to my room I was put on precautions because it was decided that I should be tested for the flu. The test was negative, precautions were removed, they decided to repeat testing for the flu and some other things with a more sensitive test, so I was put back on precautions. Somewhere in all of this either Al or one of the nurses noticed that I had some small blisters on my back, blisters that had not been there when my shirt was removed in the ER. Still, I had yet to find anyone who was willing to consider that this is most likely a bad reaction to the zoledronic acid infusion. The blisters added possible conjecture that I was also experiencing shingles, but that was quickly dismissed as it didn’t look anything like shingles, and was not otherwise addressed. Once situated in my room, I laid flat on my back with as little movement as possible until Friday when the spasms were abating enough that Al decided I needed to try the bedside commode. A change I was willing to try if for no other reason I was getting quite worried about how little I had been able to move and what it was possibly doing to my skin and my muscle tone. The rash got weird, my back looked like someone had lashed me with a whip, but otherwise no skin issues were noted. The rash went untreated until we got home and put steroid cream on it and it appears to be clearing up. My muscles loosed up when I moved.
I am happy to say that my symptoms improved relatively quickly. Despite that a CT scan was ordered to check for a compression fracture, which was another diagnosis that didn’t really fit my symptoms. At least it was canceled after discussion with the doctor. I went from excruciating spasms that literally robbed me of breath on Wednesday, to walking in the hallway and being able to climb stairs on Saturday when it was agreed I could be discharged home to continue my recovery. I am not 100% and hope to follow-up with my primary care doctor tomorrow. I consider it important if for no other reason to re-check some labs and make sure that there is not a lingering problem other than my apparent unexpected drug reaction.
This is one for the record books. My generic complaints about healthcare aside, the symptoms that I experienced are outside the norm of what has been reported with this medication. My oncologist, one of the best in the world, had never seen one like it in all of her years of practice. I hope this story does not discourage anyone who is considering taking this medication from doing so. It is a decent drug and has a place in treatment.
I end with a note of gratitude. I am more than ever thankful for the love, friendship, and dedication that my husband, Al, demonstrated once again. But more than that, the few people who he told while it was going on were more than kind in their inquiries and their offers of help. I have been reminded once again that I am loved and that I am not alone in this world. There are people who have my back and who would have stepped in and made a real difference if Al had not been able to. I am humbled by the reminder of how fragile life can be and how wonderful the people in it can be. Thank you from the core of my being.