Impending Emergency

Cancer patients end up in the Emergency Department.

Fact of life, can't be helped. Two big reasons:

• Cancers are deadly and have a whole boatload of complications
• Cancer treatments are deadly and have a whole boatload of complications

There's a little-mentioned third reason, though. It's called scheduling.

Cancer centers and hospitals stay booked solid. As mentioned here, a third to half of us will have cancer at some point in our lifetime. Expect that ratio to increase as average life expectancy does, and as treatments for heart disease get better. It's more of a question of when, not if.

Since the infusion centers, CyberKnife centers, outpatient clinics, surgery departments, and interventional radiologists are usually packed full a couple of weeks out, a patient in need of attention must often be admitted to the hospital to get treatment if something urgent, but not necessarily an emergency comes up. The means of admission? A 4-12 hour stay in the ED ( Dr. WhiteCoat says, "Don’t call it the “emergency room” or the “ER” to my face, in the comments, or anywhere else. Period. It is the emergency department." )  is the point of entry for such things. Sometimes this is while they double check what has already been reported, and sometimes to try and figure out if something else is going on with the patient.

Say the patient has a history of cancer- or chemo-related anemia and their doctor or doctors are having them get CBCs on a weekly basis. They'll keep an eye on white and red blood cell counts as well as hemoglobin/hematocrit, in addition to other things. Red blood cells and hemoglobin are mostly about oxygen transport (the glowing E.T. finger sensor) and you'll usually want an SpO₂ percentage over 92. The white blood cells and neutrophils are about the patient's ability to fight infection. Anyhow, if those numbers drop lower than they should, the patient will get scheduled for a transfusion (RBCs/hemoglobin) or a Neulasta injection (WBCs/Neutropenia). Usually they'll get scheduled a few days out, because cancer center scheduling revolves around uncertainty and missed appointments. Oncologists carry great weight and they can sometimes talk the nurse coordinators or clinical managers into wedging a patient into the schedule. This is why a patient must 1) be completely honest with their oncologist and 2) never, ever, ever be a no-show for an appointment at the clinic/hospital/infusion center, etc. (reschedule instead.) 

Despite an oncologist's pull, and despite fitting a patient into a schedule, sometimes the symptoms will get the better of them and they will deteriorate enough (shortness of breath or excessive fatigue, for instance) that the patient can't wait. You (patient or caretaker) must keep track of the symptoms, the trends, and make the hard decision to get to the ED. Just do it.

Wren's labs came back on Tuesday showing a low hemoglobin (7.9). Wednesday, she was clearly getting more and more fatigued. Her oncologist scheduled her for the first available transfusion at the infusion center on Saturday. By Thursday morning it was clear that she was still trending downward from a fatigue and shortness of breath standpoint, and we were at the ED just before noon on Thursday, by which time her hemoglobin had dropped to 6.1. A normal range for hemoglobin is somewhere between 11 and 15. If we'd waited until Saturday, the trip would've been in an ambulance, not the car.

She's still here, Friday evening, and there's a strong likelihood she'll be here through the weekend.

Caretakers and patients, keep that in mind. It is cheaper to pay for the ED visit than the ambulance transport or a funeral.

Keep track of the condition. Watch for new symptoms and worsening of old ones. Don't wait on the schedule if a symptom's downward trend is alarming. Call the on-call oncologist, let them know what's going on, and get your ass to the ED.

Own The Phone

Get your doctor's number, get his nurse's number, get the radiology department's number, infusion, interventional radiology, study coordinator, protocol department, lab, insurance, radiology preauth, prescription plan, local pharmacy, special pharmacy, therapist, and palliative care. Get their numbers. Put them in your phone. If they're all one number and a million different menus, put the menu choices in the description, save yourself what few headaches you can, because you will burn up days on the phone.

Learn the name and birth date and social security number of the person for whom you're caring.

Memorize it. Live it. Use a calendar, put it in your phone, too.

Please and thank you, even when you're fighting a lazy, broad-beamed admin in the depths of a department in order to get what is needed for your loved one's treatment. The dropouts and nepotized love being a hurdle, so don't play their game, just get the job done and leave, then write the comment/suggestion/complaint to their boss. You might be surprised how quickly those people shape up or leave when they are anonymously called out for their awfulness.

There's this double-edged sword called the Joint Commission (on Hospital Accreditation) and they are (rightly, in many cases) hated by Doctors, Nurses, and the productive members of Hospital society because they create surveys and standards by which hospitals are graded and reported on. Many of their surveys cover patient satisfaction, and many more cover standard treatment regimens with no scientific basis, but the hospitals fear them, and so the hospitals will bend over backward in order to fix things that might hurt their survey scores. Keep that in mind when dealing with poor responsiveness from a hospital. Interestingly, since the Joint Commission's not always a science-driven standards organization, many hospitals with higher satisfaction scores also have higher mortality rates.

Be a human. Tell your story. Know what's going on with the treatment. Don't be afraid to say, "I don't know," but don't be afraid to volunteer information or ask questions. Your doctors will trust you so much more if you are communicative, honest, and forthright with them. Don't hide symptoms, but don't overreport, either. Read up on the condition, but you must absolutely not become a WebMD hypochondriac.

Get your shit together and advocate tirelessly for your loved one. No one else will do it for you.

Be wary of case managers within the insurance or hospital organization, as they serve the same role as an insurance adjuster or body shop manager, they're there to maximize profit or minimize loss for their organization.They can be helpful and useful, but don't count on it without checking.

Trust but verify. Follow up. Squeak. Don't forget to breathe.

Good luck.

If The Other Nasties Don't Get You...

If the other big nasty doesn't get you, count on cancer to do the honors.

A little over a quarter of all deaths in 2009 were from some flavor of heart disease, and a little under a quarter of all deaths were from some flavor of cancer. Interesting side note: a number of chemotherapies can cause cardiomyopathy, but fortunately not all of them, and in many cases the heart is able to recover from it. Some chemotherapies cause heart attack during infusion, although this is very rare.

What does that number mean to you? The strong, sad likelihood that you will get to experience the pain directly or by watching someone close to you die from cancer or its complications.

I'm not trying to get you down. I just want you to know how common it is. That's the death figure, by the way. The total number of folks who get diagnosed with cancer during their lifetime is closer to half. I say diagnosed because there are still people who die never knowing they have it.

My wife's had cancer since 2004, or at least she was diagnosed then, after she found a lump in her thigh. She'd probably had it for longer than that. She had a couple of years of clean scans after her first set of treatments (chemotherapy, radiation, and surgery) before it metastasized and took up residence in her lungs. If one of us makes the mistake of telling someone she has lung cancer instead of saying synovial sarcoma, the first question is almost always an immediate, "Did she smoke?" It is frustrating and annoying, but it's a thing you hear and you rewind your past experience to try and remember if you'd asked similar questions of folks in the past.

A lot of the myriad forms of the disease called cancer don't have a directly attributable environmental or lifestyle-related cause. Some do, and you hear about them all the time (mesothelioma, anyone?) Some folks have genetic predisposition for certain types of cancers. There are also some cancers caused by infections from specific organisms or viruses (HPV). What it all boils down to for someone dealing with cancer is an assumption by others that conforms to the just-world fallacy. Most people with cancer did nothing to cause it. This is one of the frustrations of hearing "Did she smoke?" from people. No she didn't. She did nothing to deserve her disease. Almost everyone with a cancer did nothing in particular to get it, or if they did, they did so before the cause was documented.

Keep that in mind the next time you talk to someone with a cancer. You might also consider that you have a one in four chance of dying from a cancer of your own and at least a one in three chance of being diagnosed at some point in your lifetime. I'm not wishing it on anyone, but the big bad universe has plans of its own.