This is Broken

This day may have been the most surreal in a string of surreal days, dating back to late January. Our experience with the U.S. health care system has been less than positive; today ended well, but took an amazing amount of energy and emotional capital.

As the doctors and nurses at UCSF began to get a handle on Sami's seizures last weekend, we talked to her oncologist about an Avastin infusion, which we hoped would reduce the swelling on Sami's brain even further - and with a lower dose of steroids. The nurse practitioner, who we really like (when we can talk with her) also suggested a short stint of in-hospital acute rehabilitation for Sami. She thought it would help Sami regain some of her independence and mobility, and, as she put it, "restore her soul." We'd considered rehabilitation after Sami's second surgery, but Sutter Health was unwilling to help us make sure Sami could start cancer treatments during rehab. This time around, the UCSF doctors and case managers assured us that Sami could get any additional treatment she needed. And that she would gain quality of life.

We tried to get into the Sutter Roseville facility, close to home, but they told us they didn't have any space. Our next choice was UC Davis Health, in Sacramento. The case manager here in San Francisco contacted UC Davis on Monday. We have yet to hear back from them (it's Friday evening as I write this). Our third (and final choice), Dignity St. Francis here in San Francisco, told us on Wednesday they could take Sami.

Now that Sami had been accepted, UCSF had to check with our insurance company to make sure they'd authorize treatment. Once the referral was forwarded to our insurance, I called to make sure they'd received it and to hopefully move things along. The representative I talked with on the phone yesterday afternoon said we could expect an answer in 5-8 business days. I'm not proud of myself, but I used a four-letter word that seemed appropriate for the occasion. Several times. Swearing didn't help.

This morning, after talking with UCSF and with the insurance company again (who told me they could "expedite" the consideration - it would only take 3-5 business days), I decided to shame the insurance company on social media. Within 30 minutes of my twitter post, the insurance company reached out and asked me to email them. I did, to no avail. Late this afternoon, I emailed again (and tweeted about their lack of response). Five minutes later, a nurse from the insurance company called. And finally, after 6 p.m. this evening, the insurance company nurse texted me to tell me that the referral had been approved. Sami will be able to go to rehabilitation, and she'll be able to come home next weekend (we hope).

While this seems like a happy ending, our success leaves a sour taste in my mouth. I know there is something to the old adage, "The squeaky wheel gets the grease," but I also know that many people don't have the capacity to squeak. I realize that my job (which has allowed me to take family medical leave) gives me the ability to focus exclusively on Sami's care when I need to - most people don't have that privilege. Expecting answers is a further privilege that many people don't enjoy - many questions go unanswered, even for someone as persistent as me. I can't imagine being a patient and navigating this system alone. I can't imagine having to make decisions about keeping a job or caring for a loved one. Regardless, I can't escape the conclusion that the health care system is absolutely broken. This evening, I'm exhausted - physically, mentally, and emotionally. Sami, Lara, and Emma are as well. Today has not been healing, for any of us.

Everyone we've talked to during this experience has agreed that the system is broken - doctors, nurses, case managers, social workers, insurance company nurses, patient advocates - everyone. Some of the brokenness is perhaps trivial - having to sign a new form for every doctor, insurance representative, and hospital allowing me to represent Sami and obtain her medical records seems inefficient at best. Allowing someone to make a determination about treatment for a person they've never seen is ludicrous and cruel. Failure to communicate with a patient or her family is inexcusable. I don't know how we fix this mess. So far, swearing hasn't been enough.

Away from Home

Thank you to our friends - at home, here in San Francisco, and elsewhere - who've made it possible for the girls and I to be here at UCSF with Sami for these last 10 days. We are grateful!

Ten days ago, Emma and I watched an EMT crew wheel Sami out of the emergency room at Sutter Roseville Medical Center. We ran home, showered, fed the animals, packed our bags, and followed her to UCSF. Later that evening, Lara flew in from New Mexico. Since that day, we’ve alternated sleeping in Sami’s hospital room or sleeping in the living room of some nearby friends. Thanks to these friends, we’ve enjoyed a couple of home cooked meals; more often, we’ve eaten in the hospital cafeteria or in nearby restaurants. I think I can safely speak for all four of us - we’re tired of being away from home.

As cities go, I have to admit that I like San Francisco more than most. I generally like winter more than summer, and so I find summer in San Francisco to be enjoyable. I like the diversity, the food, the color. I’ve enjoyed the mile walk between the hospital and our friends’ home. But the novelty of being here has worn off for me - I’m ready to wake up in my own bed, wash up in my own shower, pet my own dogs.

Between part-time sheep-raising and a full-time job, I don’t typically leave home for long stretches. I can’t remember the last time I took a 10-day vacation. With mules and a horse, chickens, dogs, and a cat at home, being gone requires help - thankfully, many of our friends have stepped in to make sure critters have been fed, gardens have been watered, and sheep have been moved during these last 10 days. I imagine the lawns will need to be mowed - or maybe grazed! when we finally get home!

I find that being gone from home makes me appreciate some of the things I take for granted. Sipping my morning coffee on the back deck. Hearing the occasional owl that roosts in the gray pine near our bedroom. Relaxing with my dog Mae lying at my feet in the evening. Sleeping with the window open and awakening to that annoying mockingbird that likes to start singing just before sunrise. Eating vegetables from our garden and barbecuing meat that we raised.

We’re hoping to be able to go home this weekend, but our schedule is dependent on the schedules of others. We’re waiting for our insurance company to approve a short stay in an acute rehabilitation facility. Typical of the mess that is our health care system, they told me yesterday they’d get right on it - in 5-10 business days. I’m hoping Sami’s health care team has more pull than I do. I’m hoping we don’t have to be away from home too much longer.

Crisis after Crisis

Our journey with Sami's glioblastoma has taken another turn over this last week. Sorry if this post is bleak - I suppose it reflects where we are at the moment. I'm not seeking sympathy; rather, writing this helps me process what's happening.

As I write this, I’m sitting with Sami in a hospital room on the fifteenth floor of the UCSF hospital. It’s Saturday morning; we’ve been here since last Tuesday. I feel like I’ve been holding my breath since we got here; I finally exhaled this morning.

A glioblastoma diagnosis is a crisis for any family; our experience since Sami’s symptoms first appeared in late January seems like one crisis after another. A roller coaster of brain surgery, another brain surgery, recovery, chemo and radiation therapy, seizure, another seizure, and ultimately the partial paralysis and brain fog that brought us to an emergency room in Auburn, then in Roseville, and on Tuesday morning, to UCSF.

The latest crisis began with Sami’s first round of maintenance chemotherapy (5 days of taking the drug Temodar, followed by 23 days off the drug). The first dose made Sami nauseous, so she also started taking a new nausea drug. On the morning before her last dose, Sami suffered a clonic tonic seizure. She got to ride to the ER in Auburn in an ambulance. A CT scan revealed what we expected - significant swelling around her brain.

Over the next several days, Sami grew progressively weaker on her right side. She started needing a walker again for the first time since returning home from her second surgery in late February. By Sunday, she could barely use her right side at all. We returned to the ER in Auburn, where another CT scan showed continued edema. They sent us home.

Monday arrived. Sami still felt lousy; by Monday evening, she was unable to get out of bed even with the walker. After a few minutes of agonizing about what to do next, we drove to the ER in Roseville - a larger hospital, we hoped, would offer more advanced care. And in the back of our minds, we hoped we could get a transfer to UCSF.

When we arrived at the ER in Roseville, we were greeted by the same doctor who’d seen Sami in Auburn the day before. He looked at Sami briefly, and then called me aside. “She looks much worse,” he said, adding, “I’m sure you realize that there’s no cure for glioblastoma.” He went on to say that sometimes the doctors in places that specialize in treating these kinds of diseases don’t like to admit their inability to provide a cure. After saying he’d order another CT scan, he finished our talk by telling me, “You may want to consider calling hospice. Tonight.”

Needless to say, we were devastated. I decided to call the on-call doctor at UCSF with whom we’d been communicating all weekend. She told me it was a little early to make this decision, and indicated that we could ask for a transfer to UCSF. We communicated this to the doctor in Roseville and settled in to wait. A little more than 12 (mostly sleepless) hours later - at just after 8:00 on Tuesday morning - Sami was taken to UCSF by ambulance. Emma and I ran home, fed our animals, packed our clothes, and headed for San Francisco ourselves. Lara, who had arrived home in Las Cruces on Sunday, flew into San Francisco late that evening.

When Emma and I arrived, we learned from Sami’s nurses that she’d be hooked up to an EEG monitor to determine if she was still having seizures. She was also scheduled for an MRI. During our first several hours here, I talked by phone to a physician’s assistant and a neurosurgery resident, but we didn’t actually see any doctors for nearly 24 hours after we arrived. I realize now that this kind of condition requires a great deal of technology to diagnose, and that we were simply waiting on the doctors to review Sami’s MRI and EEG; at the time, it felt like we’d left the inattention of the Sutter Roseville Emergency Room for the inattention of the UCSF Neurosurgery ward. Communication is so important in these situations; I get so frustrated when nobody tells us what’s going on. At least the view was better - Sami’s room looks west toward the ocean.

Finally, yesterday, we had a long talk with a nurse practitioner from the neuro oncology clinic overseeing Sami’s treatment. We learned that the EEG revealed that Sami was continuing to experience subclinical seizures - seizures with no outward symptoms but that continued to irritate her brain. We learned about something called Todd’s paralysis, which can affect patients who experience seizures. We learned that Sami might be able to get a different kind of treatment for her cancer (a drug called Avastin) that would quiet her brain, relieve the swelling, and help her regain the use of her right side. And we talked about the value of a short stay in an acute rehabilitation facility that could help improve Sami’s physical condition. Following our video chat, we had a family meeting and decided to move forward with the alternative treatment and rehabilitation. Emma stayed with Sami for the night; Lara and I walked to the home of some friends who had graciously put us up all week. I think we all felt like we were finally making progress - perhaps the latest crisis was winding down.

But this morning when I entered Sami's room, she was still in a deep brain fog. When the nurse came to help her get out of bed, she could not make her right foot work. In many ways, to our non-medical eyes, she was exactly where she was when she arrived on Tuesday. Her care team tells us she's making progress, but I'm struggling to see it.

During the course of this week, in talking with my sister, I said I just wished that Sami and I could have one more normal day together. My sister reminded me that we’d been dealing with this, largely without letup, for more than four months. Later, Lara reminded me that she and Sami had hiked four miles from Auburn to No-Hands Bridge over the American River and back in March. I recalled that Sami and I had been able to have lunch in Truckee in April - so I guess we have had some normal days. But even with these brief respites, the crises keep coming. The bright spots seem to disappear into the haze of worry and crisis management. And as I sat with Sami in her hospital room this morning, I was again overwhelmed by a sense of sadness and fatigue.

Glioblastoma is a particularly cruel disease. It is fatal - eventually, it kills everyone who has it. For us, with this latest crisis, this reality has been especially difficult. We all hold out hope that this new treatment will give Sami some measure of independence and all of us a handful of normal days. We hope this new treatment will clear Sami’s brain fog and rebuild her strength and coordination. But we also know this window will close; eventually, the symptoms that Sami has experienced over these last two weeks will return and intensify. When I got to the hospital and realized that despite the video appointment we’d had yesterday, the new treatment wouldn’t begin until Monday at the earliest, my sadness and frustration deepened. Watching Sami struggle to clear her mind, watching her struggle to move and even to explain how she’s feeling, makes me feel like we’re still in the midst of this current crisis. And it makes me fear the crises to come.