One Year Ago Today

This is necessarily disjointed. I am crying as I write it. Death is ugly. We still miss her and always will.

At a little after 5AM a year ago today, I was awakened by the absence of sound that meant my wife had stopped breathing. I had been holding her hand loosely when I was in the room with her, the recliner positioned by her hospital bed. The last time she had been conscious and communicative was a day and a half before.



As soon as she was admitted, I called my parents and told them that based on what we'd heard from her doctors she was unlikely to last very long. Wren's sister was already in town with her son, but her husband and daughter weren't, so they came up immediately as well.

On July 31st, she had posted on Facebook:

Chemo tomorrow. Please hold me in your thoughts and prayers. This is the big one, the last chance. One more next week, scans in 6 weeks (if I get there). You have all been great supporting me. I always felt loved.

You see, she couldn't stop fighting.

On August 5th she was transported by ambulance and admitted to the hospital because her blood O₂ saturation was dropping and she was panting painfully to breathe even with the max of 5L of O₂ that her Oxygen concentrator could put out at the house. She was able to articulate well enough in between panted breaths to tell the doctors that she wanted to be DNI/DNR (Do Not Intubate/Do Not Resuscitate). This was the first time in her many hospital admissions that she had told them that she didn't want to be tubed or rescuscitated.

My family arrived. Her sister's family arrived. Our family arrived, because her struggle is what knit us together, and continues to bring us closer.




She was conscious and knew they were there when the rest of the family arrived, but breathing painfully. They kept upping her O₂ until she was on the most they could put out. They gave her steadily more painkillers to allow her to take deeper breaths. Lasix to reduce fluid in her lungs. She slept a lot, drifting in and out. She was no longer panicky and no longer sounded as pained as she had. We were told that she wouldn't recover, in the gentlest terms and with the greatest sorrow, but firmly.

She was just barely there on the evening of the 6th and I spent some time talking to her.

We all cried a lot on the 7th.

At 5:18AM on the 8th, I woke up to that absence of sound and cried some more. I called Danielle and then my parents and then I waited just a bit and called the nurse.

We all said our goodbyes to her there in the hospital.

Later that afternoon the family all had a meal together.

The following day, we met in the afternoon and held a brief memorial by the creek in the park. We all tried to tell a story or share a moment that reminded us most of the happy times we had with her. Then we went home. Family to their homes and I to ours, mine.

Dear gallant, brave, beautiful, human Corinne Lauren Kennedy Hiland, we love you and miss you. I am so glad of the joyful moments we all stole together. You deserved so many more. Thank you for being you and making us better by doing so.



We won't ever forget you.

Death, Dignity, Drugs, and Liberty

The general feedback from everyone is that this blog is depressing. I'm also getting folks saying that it's amazing I'm able to stay objective while writing it. I'm not sure how to take either of those except to say that when I'm writing it, I don't want to be depressing, I want to make sure that the posts are information-dense so I don't waste anyone's time. I also don't feel very objective when writing it. Again, it's a matter of making sure the information is there for anyone who takes time to read it and generalizing it enough that it is useful instead of maudlin.

Having said all that, let me give you another few paragraphs of depressing and impersonal information.

How you feel about this post will be directly affected by how well you can accept these stipulations:

1. Many cancer patients live and die in misery. This is unacceptable.
2. Your greatest liberty is the choice to do what you will with your life, so long as it does not directly harm someone else.

We have a huge problem in our society, a pathological cultural desire to dictate to others how they should conduct themselves and how they should live their lives. A lot of folks will call that kind of situation a nanny state or paternalism. It's an attitude pervasive around the world to varying degrees, usually contingent upon the apparent strength of one or more religions in the socio-political economy of a government's legislative branch. I know that's a lot of weaselly op-ed words in one place, pointing a finger at a single cause for a systemic set of symptoms, but there you have it. The voyeurism of the early American Christian is still with us today, yet we deny it (as we also deny death) on a daily basis.

I'm going to make some of you mad, but I want to throw a third stipulation out there.

3. The only true sin is to do injury to someone who hasn't injured you.

I know it's hard to swallow, considering the way most of us are brought up, but it is both the ultimate repudiation of injurious voyeurism as well as the reason to cease nanny state interference in the lives of its citizens.

If you can answer this question by saying something other than "none":

"What business is it of mine how anyone else lives their life, so long as it doesn't hurt me?"

without mentioning a religious text or a convoluted legalism based upon a religious text, I will be surprised.

Now let's move on, with those three stipulations in mind. Let us accept that people are responsible for themselves, and that it is none of our business what they do so long as they do not injure us. Accepting that premise, let's now look at some of the ways cancer patients are negatively affected by those who can't or won't accept those stipulations.

Over the years, national drug policy has been driven by fear instead of by science. This means that there are still people out there who think that Reefer Madness is a real thing and who refuse to allow the gummint to end a failed war on drugs.

How does this affect cancer patients?

1. Increased regulation of narcotics/pain killers makes those drugs more expensive.
2. Demonizing of palliative care doctors makes it harder to get the prescription.
3. FDA, DEA, and state rules for prescriptions makes it harder to deal with the pharmacies.
4. Marijuana's mixed legality (and continued assault by the federal government) means that an otherwise low side-effect method for alleviating pain is unavailable to millions who suffer.
5. Societal perception of painkiller and narcotic use negatively stigmatize those who use them.

Folks who believe in the war on drugs are often blind to their misapprehension, mostly because they don't realize (or they are willing to ignore) how much pain it causes, either from the above points, or by increasing drug violence and property loss by exponentially increasing the apparent value of otherwise easily acquired materiel. Now, I know that families can be destroyed by drugs and alcohol. I know that kids should be protected from both until they're able to make good decisions about them. I also know that human nature will put pleasure seeking above other behaviors in most of the people who are susceptible to it. The ignorant will just have to understand and internalize that criminalizing drug use and ruining lives based on it will hurt families far more than accepting human nature and offering stigma-free treatment for addiction instead. You can't save people who are intent on destroying themselves, but you can offer them a way out and you can minimize their negative impact on society in the meantime. Most importantly, you can offer them a humane future, regardless of their foibles, or allow them the dignity and liberty to choose death on their terms.

So that's the next reason to dislike what I'm going to say if you disagree with the three stipulations.

It is the right of any adult to choose the time of their death.

I'm sorry, but it really is. It's not your decision. It's not your place to tell them they should or shouldn't. It's fine for you to say, "I would never do that," or "that's so selfish, I can't believe they'd leave their family like that," but that's the extent of your ability to participate in the discussion. You, the legislature, the clergy, the psychological profession, and the rest of us have no right to tell someone that you have decided that they can't end their own suffering (objective or subjective) on their own terms.

I can climb down from my libertarian stump and say that I understand the fear my generation and the generations that bracket it had drilled into us. I know it's difficult because I suffered from the same misapprehensions. I know it's difficult to turn the puzzle around a little bit to see where the gaps are and how to fit the next piece into it. Please do it. The pain we create by forcing these flawed concepts of moral behavior onto others is not just a philosophical thing, it's a tangible and deadly thing that hurts and kills on a daily basis.

Rethink the situation and consider doing something about it. Write your Governor, Congresscritter, Senator, or President and suggest that we should make life easier for folks in pain by repealing the ludicrous laws that make it difficult or illegal to treat people's pain. Consider doing the same and ask them to repeal the laws that rob people of their dignity and humanity by making it against the law for a wife to hold her terminally ill husband's hand while he intentionally overdoses to escape the pain of his disease.

All Good Studies Must Come To An End

Way back in the 1960's the National Cancer Institute, as part of their larger program for finding and evaluating anti-cancer agents, found that an extract of a particular sea squirt was capable of killing cancer cells.

That extract was licensed and a means of synthesizing it (instead of crushing up a shitload of sea squirts) was developed. It was brought to testing and eventually to market. It's called Trabectedin, brand name: Yondelis.

In Europe, Russia, and South Korea, it is approved for treatment of folks with soft tissue sarcomas. Like my wife, they've either received other treatments that have failed, or are too sick or weak to receive. For some, Trabectedin is the last, best hope for a working treatment. In the U.S., the FDA did not approve the drug under its original study (based on treatment of ovarian cancers) and requested additional Phase III studies be done first. Currently there is a "making available" study which provides access to it for those who have exhausted other treatment options.

Unfortunately, insurance (even the gold-plated insurance I have as a gummint employee) will often say they will refuse to pay for study-related care. This means that the patient will usually end up bearing the cost burden of infusion services and pre-medications associated with the study among other things, though the drug is provided by the study free of charge. Catch-22, right? Choose a paid-for treatment unlikely to work, or take a chance on a study treatment and pay out-of-pocket for everything except the drug?

How's that for a health care gap? And to make it even more interesting, look at the prices. Somewhere around ~$3500 for nurse's services (accessing the patient's mediport, checking vitals over infusion period, etc), infusion services (infusion pump fee, iv tubes and bags), and facilities fees (paying the rent, supplying sundries like alcohol wipes, etc.) If the chemotherapy is on a 21 day schedule, you're looking at over (365/21)*$3500 = $60,833 a year. Don't sweat it too much, though, by the time a patient is participating in clinical trials, survivability is often well below a year. This isn't a fault of the studies or the drugs, but just a hat tip to human nature. People don't choose to participate in studies until they are desperate. They (and their doctors) prefer to work through the approved and non-study drugs unless there is a really compelling reason to do otherwise. More often than not, the compelling reason is that everything else has failed, although rarely there is a breakthrough for a particular cancer that justifies it.

Want to hear something interesting, though? In oncology, if the chemotherapy drug is FDA approved, usually the insurance company will pay for it, even if it is being used for a cancer other than those for which it was approved. From an oncologist's standpoint this is often justifiable because there will be other protocol studies after a drug is a approved, testing the delivery processes, intervals, and dosages for other types of disease. If a study shows early results that a drug is particularly effective against a certain cancer, oncologists will share that information so they can offer their patients better survivability and quality of life. My wife's oncologist is one such person. He stays very connected to other oncologists and conferences. Georgetown University Hospital is (obviously) a learning hospital and the Vincent Lombardi Cancer Center affiliated with it has staff and doctors that are absolutely stellar people. Unfortunately, Georgetown doesn't have access to the Trabectedin study, so her oncologist referred her to Fox Chase Cancer Center in Philadelphia, PA for it.

She's on her third course of the stuff and while it might have been marginally effective at stabilizing her disease (some tumors shrank, some grew a bit, and a couple of new ones showed up,) it is proving to be too dangerous for her to continue treatment with it. Her blood counts drop too low for her to make it between 21-day cycles without frequent transfusions and fluid retention (could possibly cause congestive heart failure.) Additionally, while the medical staff, nurses, and doctors at Fox Chase Cancer Center are very nice and knowledgeable, we encountered so much red tape from their administration staff that it has been difficult to build a strong and trusting bond with their organization. Trust is key in the patient-hospital relationship and she just hasn't been able to trust them the way she does Georgetown.

Here's an example: we've been married almost three years, but in that time she's either been too sick or we've been too busy to go to the DMV for an ID card with her new name on it. Georgetown just put in her married name, no problem, back when we first visited them. Whereas Fox Chase absolutely would not, could not make that change without a picture ID with her new name, even if we provided the marriage certificate. It didn't matter where the request came from, doctor, nurse coordinator, administrator, without a picture ID, they refused to put in her married name. No big deal, you say? Well, that might be true, if they weren't requesting records and lab results continually under her maiden name. This causes the patient and the medical staff no end of grief as they end up trying to tie together loose ends and reconnect missing links. Utterly unacceptable, from a business process and patient relations standpoint. Rules are made to be bent and/or broken when given a well-considered justification.

It would be as easy as this: 

If an organization is so straitjacketed by their rules that a reasonable request to change the contents of a single field in a system doesn't provide enough CYA for the acting bureaucrat to feel comfortable doing so, it is no wonder that humans will not trust it. That's how we feel about Fox Chase Cancer Center. They have very good medical people, very friendly staff, and a miserable corporate culture. One possible reason is that Fox Chase underwent some financial restructuring and is working to become part of the Temple Health System, but that's purely speculation. FCCC may have had a miserable corporate culture well before any of that.

So, long story short, our patient is still in the hospital, with an expectation of discharge Sunday or Monday, depending on whether she'll need to carry oxygen home with her. She is ending her Trabectedin study participation. Her oncologist at Georgetown is working to find another study, a Phase I, appropriate to her disease and condition. She is taking a nap.

Patients' Patience, Patients.

My sister, the Nurse Practitioner, has a blog named Patience Pending. You can blame her for the post title.

The fourth day of a hospitalization is probably the worst. It's official, you've spent half a week there. You've slept poorly (no such thing as a full night's sleep at a hospital), been poked and prodded, eaten food from passable to awful, and dealt with the structural imperfection of the hospital hierarchy.

Never mind that it's Sunday afternoon, and you're about to enter the Long, Dark, Tea-time of the Soul. That last bit, the hospital hierarchy, and the shared responsibility of the specialties is the real curse of hospitalization.

But have patience with it, patients, because it is (mostly) better than it used to be. On the whole, there are better outcomes, but the flip side of the coin is longer stays. Exercise your patients' patience, because the paternalism of old has made way for patient consultations, acceptance and understanding of risk, and a generally greater requirement for the patient to participate in their own treatment and care.

Let us return to our hypothetical patient who was admitted to the hospital via the Emergency Department. The patient with a non-emergent, but urgent healthcare requirement. In that case it was low hemoglobin, dropping RBCs, and trending lower WBCs/Neutrophils. Once admitted and on a hospital floor, she gets a bunch of blood products. The doctors and nurses continue to follow up on secondary complaints, like a heavy, off-cycle menstrual period, and generally worsening fatigue. Your patient and caretaker did well by coming in, because it certainly would've been an emergent condition by now.

She's seen by a bunch of doctors. The ob/gyns want to stop the bleeding ASAP (to reduce the necessity of more blood products). Switching the patient to a hormone like Provera known to stabilize and reduce uterine bleeding hasn't helped, so they want to perform a uterine ablation (or remote possibility: a uterine artery embolization). The patient is mostly OK with this, as she knows the amount of radiation and chemotherapy she's received over the past seven years or so has likely rendered her sterile. However, the attending (and his resident and intern) want to wait until she's breathing easier because they'll need to put her under either a nerve block or general anasthesia. These are both scary things to do to someone who is anemic with poor oxygen absorption.

Wait, what? Didn't she get a bunch of blood products to help her breathe better in the first place?

Well, yes, but there's a problem. The kidneys can only process so much additional fluid from the body at a time, and when they're made to work overtime to do this, other organs step up (or down) their game with relation to fluids. So, the colon stops pulling so much water out of the feces (nightmarish diarrhea, anyone?) and the lungs and sometimes the various chest cavities can begin to fill up with water (pneumonia or pleural effusion). The diarrhea doesn't bother the attending and his gang so much because they know a fluid bolus is just a bag of normal saline away, besides, there's no hospital in the world that will allow itself to run out of chux pads. The elephant in the room is the one you transfused into the patient by giving her so many (necessary) blood products. Her lungs are fairly wet at this point, so you need to give her lasix to get her kidneys to process that fluid a little faster.

Oh wait, the patient gets really out of breath even just trying to elevate enough to use a bedpan? OK, foley catheter.

Oh wait, she's got scars from prior radiation treatment, and she's swollen from too many fluids already, so the cath takes four or five tries over two days to get inserted.

This is the sort of thing that sometimes results in standard operating procedures and the creation of hospital and/or treatment protocols. In hindsight, the patient (already known to have problems: low SpO₂ and elevated heart rate when trying to use bedpans or moving to a bedside commode) could've received a catheter prior to getting the first unit of blood, before the swelling. Reasonably indicated by the shortness of breath on exertion, but nurses and doctors don't like putting a catheter on someone if they can help it, and they especially don't like broaching the subject with someone who is awake and alert. My dear friends, a catheter can save you a lot of misery. I know we're all scared to talk candidly about pee and poop, but let your doctors and nurses know that if the alternative is misery, you're more than willing to accept a catheter!

Anyhow, the catheter is in, now it is a lasix waiting game. Drain the fluids, get the patient's bleeding problem treated by giving her some more platelets until the lasix does its job and they can do the uterine ablation. Poll her CBCs a couple of times for stability, then if she's feeling better, let her go home.

It's a project management dependency game with a bunch of weird little feedback loops in the Gantt Chart. Even though there is still some right hand not knowing what the left hand is doing behavior, hospital hierarchies manage it better than they used to, but it takes time. Remember this and continue to develop your patients' patience, patients.

 

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.