CA Prop 46 – A Flawed Bill With Negative Impacts On Healthcare

Disclosure: I attended a luncheon hosted by No On 46 in order to learn more about this bill. I was not provided any compensation for this post, and all opinions expressed are my own based on my personal healthcare experiences.

Nearly a month ago, I attended BlogHer ’14 in San Jose. Typically I come home from BlogHer energized and inspired to write, write, write. And I did have some of that, but mostly my mind has been focused on the impending birth of my baby (ANY DAY NOW!).

With that said, I attended a number of healthcare-focused panels during BlogHer. After working* in a hospital in a rural area for several years and then spending an extensive amount of time in hospitals with my son while he’s been fighting Leukemia, I’ve learned a few things about the healthcare system. Still, I didn’t realize how relevant this bill was to me until I learned more about it at BlogHer.

If you’re a California voter, I hope you will take the time to read this post and learn more about this bill (the full text of which can be found here), as it will have impacts on everyone in the state who utilizes the healthcare system. And then, of course, cast your vote in November!

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The three main components of California Proposition 46 are:

  • It raises the cap on the “pain and suffering” portion of medical liability rewards from $250,000 to $1.1 million.
  • It requires both random drug and alcohol testing, as well as routine testing of physicians who are involved in any medical procedure that has an associated “adverse event.”
  • It requires practitioners and prescription drug providers to consult a database prior to prescribing controlled substances to patients.

The rationale behind this bill is that it will deter or prevent prescription medication abuse by patients who “doctor shop” in order to get controlled substances prescribed to them, and hold medical care providers accountable for any fallout events that could result from medication and drug abuse (by both physicians and patients). This is supposed to increase patient and public safety by decreasing the number of adverse events associated with healthcare procedures, and thereby decrease the number of lawsuits. The bill was created in response to an incident in which two children were killed by a driver under the influence of alcohol and prescription painkillers. (Please take the time to read that article – it will provide a lot of context for the motivation behind the bill. After reading it, I would ask that you contemplate whether this bill would actually have prevented the death of those children.)

On the surface, the bill sounds like it addresses a number of issues and would save lives. But, as most of us voters know, there are many bills that make it onto the ballot every year that aim to do something good, but fail to deliver due to flaws in practical application. Prop 46 is one of these flawed bills.

I’ll take this point by point and offer my perspective, as both an individual who has worked in the healthcare system and someone who uses that system extensively, on why this bill is significantly flawed and would actually end up doing more harm than good here in California.

1. It raises the cap on the “pain and suffering” portion of medical malpractice rewards from $250,000 to $1million.

If the cap on what can be awarded to those who file a lawsuit against medical practitioners and hospitals is raised, that additional award money has to come from somewhere. Medical malpractice suits WILL happen, and to accommodate the increased amount of funds that will be awarded, providers and hospitals will need to increase their liability insurance coverage. This will cost them more, and they will pass the cost onto patients by increasing the price tag on procedures or insurance premiums.

What I know from processing contracts and facilitating physician recruitment in a rural California hospital is this: many physicians, particularly specialists, end up closing their private practices due to the high overhead of liability insurance. They move to practicing medicine in HMOs or they leave the state. Hospital systems can negotiate better insurance rates for liability insurance due to the bulk amount they require – independent physicians do not have that bargaining power and end up paying more for liability insurance (even if they don’t end up in lawsuits). This is why seeing independent specialists and doctors in private practice costs patients more.

This hits low-cost clinics – like Planned Parenthood – particularly hard. Many clinics (primarily used by low-income individuals, teens, those without insurance, and minorities) are already struggling to keep their doors open and retain physicians to provide services with little or no pay, and offer quality care to patients.

Note: current law specifies unlimited awards for a patient’s medical costs, punitive damages against the practitioners, and lost wages/earning potential associated with a medical liability case. The current cap of $250,000 only applies to pain and suffering awards.

2. It requires both random and routine drug and alcohol testing of physicians who are involved in any medical procedure that has an associated “adverse event.”

I’m not against drug testing of medical practitioners – patient safety is absolutely paramount and I certainly don’t want someone under the influence in charge of my health! However, more drug testing equals higher costs – the bill as written requires hospitals to bill physicians for these costs. The costs are there whether the practitioners are testing positive or negative for substances, and again increases the cost to physicians of practicing medicine in California.

Aside from the cost factor, the bill would require that practitioners who are involved in a case that resulted in an adverse event (even if that event turned out to be accidental and not related to physician negligence) be suspended from practicing medicine until positive results are investigated [see Section 2350.30(b)].

So, for example: a patient claims to have suffered extra injury from a surgery but it’s not reported until after the procedure (days or weeks or even years after – a statute of limitations on the discovery of adverse events does not appear to be written into the bill). The medical professionals involved in the surgery are sent for drug testing – after the fact (because time travel hasn’t been invented yet). Perhaps they test positive for Vicodin (an opioid) in their system due to a dental procedure they had that day (the day the drug testing is required, which is who knows how long AFTER the surgery on the patient) and said Vicodin wasn’t prescribed by a third party or it was leftover from a prior procedure. (Or maybe the physician smoked marijuana to relax after a particularly intense day of surgeries and they don’t have a prescription!) Their license is suspended until the courts investigate the practitioner and obtain proof that they were not under the influence during the surgery.

How in the world is anyone to know if the physician was under the influence while practicing medicine if the drug testing occurs after the fact? No one can know that, so the (possibly unintended) result of requiring drug testing is that medical practitioners involved in adverse events are presumed to have been under the influence and punished for being under the influence (due to the temporary license suspension) even if it’s impossible to prove that drugs were not involved in the event.

[Note: Prop 46 defines "drugs" as marijuana, cocaine, amphetamines, opiates, and phencyclidine (PCP).]

3. It requires practitioners and prescription drug providers to consult a government-run database prior to prescribing controlled substances to patients.

This portion of the bill is intended to thwart drug-seekers who abuse medications such as prescription painkillers by visiting multiple doctors in order to obtain multiple prescriptions. Any time a medication from a list of controlled substances is prescribed by a physician or the prescription is filled at a pharmacy, the medical professional must first check the CURES database to see if that medication or something similar has been given to that patient before and how often and by whom.

Patient privacy comes into play here because any physician or pharmacist who logs into the database can see your medical history – not just your primary care doctor. Also, law enforcement has access to the database, regardless of the fact that they do not have pharmaceutical training.

In addition, the database is a government-owned and run program. The technology is not up-to-date; it’s slow and unreliable and cannot currently withstand the additional load to servers that would occur if every physician and pharmacist in the state was required to log in every time a prescription was being written or filled. (In September of 2013, Senate Bill 809 was introduced and passed into law, which required upgrades to the CURES database; however, that process was expected to take two years. If Prop 46 passes this fall, it goes into effect immediately – about a year before the upgrades to the database are due to be completed.)

When a physician or pharmacist cannot log into CURES due to a slow server or a crashing system, patients (including those who are NOT drug seekers) will be denied prescription pain relievers. Once again, this issue would hit rural areas the hardest because technology is notoriously behind the times. Even if rural hospitals and clinics have up-to-date physical hardware, internet speeds are rarely optimal.

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One last thing that I feel is important to point out as a strong indicator that Californians should vote no on Prop 46 is the list of supporters (1 senator and 3 organizations) vs. opponents (I’m not actually going to count that gigantic list but it includes officials, doctors and medical groups, medical societies and business groups, labor unions, hospitals and health centers, insurance companies, and other groups such as the ACLU and the Civil Justice Association of California).

* My work in a rural northern California hospital included legal contract tracking and processing and physician recruitment support. I worked with the Business Development, Finance, Risk Management, and Legal departments during my tenure. The hospital’s patient population overwhelmingly consisted of low income people with Medicare coverage and due to the rising costs of healthcare combined with low reimbursement rates from insurance companies, the hospital struggled to stay in operation. Further, it was extremely difficult to recruit quality, experienced physicians to the area due to low compensation compared to the high cost of practicing medicine.

Mental Illness, Mass Violence, And A Brick Wall

I’ve written about my brother Daniel previously here and here. Both of those posts are very much worth reading to understand our family’s story.

Here in the US it seems we are dealing with mass shootings on a regular basis now. It may or may not be due to an increase in the actual number of shootings, but for whatever reason we are becoming more aware of and focused on the problem. Some people blame misogyny, others blame gun laws, and still others place the blame on the media for sensationalizing the gunmen. Many (if not most) of us are at a complete loss as to what to do to address – and hopefully prevent – more violence.

By Francois Polito (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

By Francois Polito (Own work) CC-BY-SA-3.0, via Wikimedia Commons

I don’t have a solution to the problem, unfortunately. I wish I did! But I hear people asking why these things happen and I do have some insight to offer in that regard – on the individuals who are violent, mentally ill, and left completely unchecked due to enormous flaws in our legal and mental health systems.

First, let me make a few things clear:

The diagnosis of a mental illness should not be a grounds for denying a person rights by itself.

The vast majority of us living with mental illness are not violent and present no danger to those around us.

The fact that a person suffers from a mental illness does not mean that he/she cannot make good decisions.

With that said, there are those out there that are both violent and mentally ill – and they are not receiving sufficient treatment. Further, there is no recourse for those around them – there is only brick wall after brick wall standing in the way of getting their loved ones help. Family and friends have to sit and watch while the illness continues to eat away at everything that was good about the person.

After each shooting, we are lambasted with details about the shooters and their families. In most of these cases, so many aspects are eerily familiar to me. The recent shooting near Santa Barbara by Elliot Rodger, which was mostly blamed on misogyny, struck a huge chord with me – the big similarity being that my brother has made many of the same statements as Rodger regarding women. Like the shooter, my brother believes that those around him are to blame for his lot in life. If he were to go on a murderous rampage that was aimed at women, a person might say that his misogyny was at the heart of it and they wouldn’t be completely off-base.

But, here is the thing – over the years as Daniel’s illness has gotten progressively worse, he has also made horrible, violent statements about actors, people of color, doctors – even babies. There is no guessing who his derision will be aimed at next. Any violent acts he commits could happen to occur while he is focused on any of these groups of people. This is how his mental illness works.

Remember: not all mental illness works that way and most who suffer from mental illness (or even the specific illness my brother suffers from) are NOT violent. Individuals are different and that means that the ways in which mental illness manifests in each person will be different, even if they have the same diagnosis.

My brother has been diagnosed with Schizoaffective Disorder and, in his case, he exhibits violent tendencies when he is at a low point (despite the fact that aggression is not listed as a symptom for the disorder – for him, it IS a symptom that his illness is flaring big time). His understanding of his life story differs from the generally accepted reality. His understanding of events and people differs from reality. His understanding of language and the meaning of words differs from what is agreed-upon by society. He lives in an alternate reality, one that is not truly representative of what is actually going on around him.

His behavior is not the result of societal attitudes – his behavior is due to the way his brain processes information. Because of this, he latches onto things that he hears and sees around him that fit into his own twisted view of the world – many of those things happen to deal with racism, sexism, conspiracies, etc. – anything having to do with extreme displays of emotion or radical ideas. If something doesn’t fit into his ideas about the world, he will either dismiss it completely or reframe it to fit into his own way of thinking.

Unlike my brother, most of these shooters haven’t been diagnosed with a mental illness, but that doesn’t mean they don’t suffer from mental illness, does it? In the case of Elliot Rodger, he had seen several therapists and his parents had called the police because they were concerned about his behavior. Having no prior knowledge of the weapons he had stored in his home or his many internet rants (which could have provided important information about his mental state), the police walked away when Rodger assured them that he wasn’t going to do anything violent.

We ask why we didn’t this coming, but even if we did – what could be done about it?

I can’t tell you how many specialists my brother has seen over the years who never diagnosed him with Schizoaffective Disorder. (He has diagnosed with ADD at one point as a child, which was clearly a drop-in-the-bucket of what was really going on.) Many of us who suffer with mental illness can tell you that RARELY does anyone hand over a piece of paper with a diagnosis on it, even if they are more than willing to write a prescription to treat symptoms – and it’s extremely common to be mis- or under-diagnosed. Each type of mental illness can manifest in so many different ways and symptoms can change drastically over time. In my brother’s case, the longer he goes untreated, the more his disease seems to progress and take him further from reality.

The presence of mental illness is one piece of the puzzle, but we have to ask whether there are adequate systems in place to address violent mental illness and prevent that violence from being directed outwardly and at the public.

Due to my family’s experience (and the stories of others who have shared their own struggles to get help for ill family members) I can say with 100% confidence that NO, our system is absolutely NOT set up to handle these issues in any sort of helpful manner. And there is very little that is being done about that fact, despite the growing concern over occurrences of public acts of mass violence.

My brother has talked again and again about inflicting violence on others – family, strangers, whatever. He has described in detail what he would do in an attempt to get away with it, stating that he would leave various body parts of his victims in random, separate trash cans. He has spoken positively of concentration camps. He is paranoid, delusional, and has hallucinations. He has made threats directly toward people, destroyed property, and, most recently, he has physically assaulted members of my family. He has published his rants all over the internet – just as Elliot Rodger did, and countless other perpetrators before him – and our family’s attempts to get help for him, to prevent his aggression from escalating violently and publicly, have gone nowhere.

The police have been called many times over the last 6 years or so, but only the most recent incident led to any criminal action – when he punched my mother in the eye, he was finally arrested. My mother moved to an undisclosed location and got an order of protection against her only son, as much as that killed her to do it. My brother was quickly released from jail and assigned a court date. In lieu of more jail time and felony charges, the court ordered him to participate in a “mental health program,” a program that doesn’t require that he take medication, be supervised by anyone, or be admitted for in-patient care. He simply has to attend counseling.

So, to recap, we are talking about an adult male with a diagnosed mental illness that he refuses to treat (or even acknowledge), numerous violent outbursts that have required police intervention, jail time, and restraining orders, plus detailed plans for other acts of violence against the public. Is counseling going to cut it?

My brother can easily obtain a gun or guns LEGALLY. After all, he has no felonies on his record and has never been held as an in-patient at a mental facility (my mother tried to have him admitted – they wouldn’t take him because they didn’t have enough beds, he didn’t appear out of control, and he is over 18 and didn’t want to be admitted) – which in California is grounds for denying the purchase of a gun. Apparently his therapist has insufficient evidence to show he is a threat toward anyone – his sense of self-preservation is still strong and he tends to not mention his violent thoughts to those with authority. My mother has done everything she could think of to give the therapist, the police, and the court the information they need to address my brother’s problems, but there is only so much she can do while also keeping herself safe from him.

My family members and I can tell you that my brother wouldn’t think twice about going on a shooting spree. He doesn’t really understand the emotions of others, and in fact seems to enjoy seeing emotions played out in extreme ways. It clearly doesn’t matter what his family members say, though – we’ve exhausted the system.

At this point it seems that his case is a lost cause and he is a ticking time bomb. And when it goes off, the police and even his therapists will probably say there was no warning or that the evidence was insufficient to do anything to prevent his acts of violence.

But clearly there is evidence…there is just no solution to this glaring problem.

Aural Update

Is that a word – aural? I’m not sure but it is amusing to me so I’m going with it.

In case you haven’t guessed (or you’re new here), this is in reference to my post Lions and Tigers and Auras, Oh My! I thought an update might be in order.

First, Jack spent a weekend with his dad and step-mom and during his time there, his step-mom asked him how long he’s been seeing colors around people. Jack’s answer was, “Since I got my new glasses.” And we all thought, AH HA!

I did some research and found out this is called chromatic aberration, or “color ghosting” around the edges of objects. It is much more common in polycarbonate lenses (which are generally what they give to children because they are more durable) that have stronger prescriptions. Some people don’t notice it, but Jack does. Apparently.

In addition to learning this valuable information, I met with Jack’s therapist and her supervisor – both to get my questions answered and get an update on Jack’s progress in therapy. We all agreed that Jack is an extra-empathetic and intuitive kid. We also agreed that he is in need of tools to help him learn how to distance himself from the emotions of those around him so that he doesn’t absorb them, which has caused him problems at school. He comes by this naturally – I deal with it, as well. This ‘ability’ has led me to refer to myself as a ‘mood sponge’ and it can be very difficult for me to differentiate between my own feelings and those of various highly emotional people I might spend time with and care about. It can be very confusing when I get depressed out of nowhere and have no clue as to why – and then it all becomes clear when a family member or friend that I’ve been around a lot admits they’ve been struggling with depression. Anyway, I haven’t done a great job of learning how to handle this, so it’s not something I can help Jack with. Jack’s therapist, however, can help him with that as part of their regular therapy.

Regarding the whole auras and Intuitive thing – the supervising therapist clarified that she had not been suggesting that Jack meet with an Intuitive – merely, it was a resource for me (and his other parents) if we wanted some additional guidance in understanding a highly empathetic child. None of that is part of the therapy he is getting from them; it’s just extra information that we can do with what we will. I expressed our general discomfort with that route and let both therapists know that we’d like to focus on the typical therapeutic methods of helping Jack to learn to put up boundaries, which they are more than happy to do. Whew.

I didn’t bother arguing that I don’t think Jack can actually see auras or explaining about the chromatic aberration thing. Essentially, the whys of his empathetic nature aren’t so important to me – I don’t think we can really know why he is the way he is. What is really important is that he learns how to utilize his empathy to his own benefit instead of being constantly exhausted by the emotions of others around him.

Hopefully I can learn that, too! It would sure make my life easier.

Last but not least, THANK YOU to everyone who provided input on my post. It was very helpful to hear a variety of perspectives on this subject. I really appreciate it. My friend Jana recommended I get the book The Highly Intuitive Child: A Guide to Understanding and Parenting Unusually Sensitive and Empathic Children (that’s an affiliate link). I’ve started reading through it and so far it’s RIGHT ON. So if you’ve noticed your own child seems extra sensitive to the world around him/her and you’re looking for some parenting tips, go check it out!

Moms In Training

Running is all the rage right now. I see you all with your FitBit and RunKeeper status updates and I envy your motivation! I was a certified couch potato long before becoming a parent, and now it’s that much worse. Who has time to exercise between laundry and meals and playdates – not to mention the scads of doctor appointments now that Jack is in treatment for cancer?! Sometimes I can hardly get myself motivated to walk the block from work to Starbucks!

But there is something that has motivated me to get out and walk: a good cause! Especially for others in Jack’s situation – those dealing with life-threatening illnesses like cancer. This is why, for the second year in a row, I’m participating in the Make-a-Wish Foundation’s Walk For Wishes. Getting out of the house and walking with others who have a similar goal in mind is an amazing feeling. I can’t recommend it enough!

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Me, prepped for a fundraising 5k!

Another wonderful organization – The Leukemia & Lymphoma Society – recently sent me information on a new program they are launching. This program is tailored to moms like me – moms who want to do some good in the world while meeting other moms and doing something healthy…moms who might not be in shape but would love to participate in a 5k for a GREAT cause. Moms In Training is a flexible nine-week program that gets moms together on Saturday mornings to prepare to walk or run a 5K. And for a little extra motivation, participants can dedicate their walk to someone special, as my friend Beth did for Jack two years ago, in order to raise money for blood cancer research.

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Jack wearing his Team in Training shirt.

Moms in Training is all over the San Francisco Bay Area, with Saturday morning workouts in San Francisco, the East Bay, the North Bay, the Peninsula, the South Bay, and even down in Santa Cruz. The final event – the 5K – will take place June 22nd in Alameda, CA. Those who want to participate pay a $50 registration fee and commit to raising just $500 in exchange for amazing support and coaching from the LLS.

mom-and-kids

(c) LLS

If you aren’t located in the Bay Area, don’t fret – the New York City, Boston, Philadelphia, Atlanta, Chicago, Dallas, Seattle, and Washington DC chapters also offer the Moms in Training program!

To participate in this program, sign up by April 12th! And if you sign up, please let me know so I can help spread the word about your efforts to raise money for blood cancers while doing something healthy for yourself!

Jack will once again be an honoree, but this time for a Moms In Training team here in the Bay Area. WOO HOO! Check back for a link to their fundraising page soon!

NOTE: This is not a sponsored post and I have received no compensation from the Leukemia & Lymphoma Society or anyone else for writing about their Moms In Training program. All opinions expressed in this blog post are my own.

I Can’t Write About Spain

I want to write about how amazing last week’s trip to Spain was. Because truly, it was wonderful. I needed that change of scenery. I needed to get away from the stress of day-to-day life. David and I badly needed that time together to be a couple and not caregivers. We got that in Spain and it was lovely. It was so very worth it!

Some day, we’ll go back.

We had a whole week abroad free of worry (for the most part). And I wish I could say that I feel refreshed after that change of scenery, but I don’t. I know I should feel happy – my soul renewed and inspired – and I should be ready to tackle everything all over again. I feel conflicted instead of happy. Less than a day back and the blanket of depression I’d tried to leave behind me when I got on the plane to Madrid enveloped me all over again. Every time I’m asked how Spain was, I say, “it was…good.”

Spain was awesome.

On the other hand, I was not awesome; therefore Spain was…a mixed bag.

I just want to forget the less wonderful things, but I can’t. I’m stuck.

I spent a lot of the week battling a nasty cold that seems to have turned into a sinus infection. I dealt with insomnia (which hit at different times than my husband’s insomnia). Half the time I longed for the comfort of my own bed and an ability to recover from my cold without missing out on a whole world outside the hotel. I was so overwhelmed by many of the wondrous things we saw and yet I lacked interest in other things that I usually would enjoy. I had very little appetite to take full advantage of the foods and wines I had been looking forward to trying. I was so out of it by the end of the trip that I accidentally forgot a painting we had bought in Seville in the hotel lobby before we left on a train back to Madrid. Then on our last night in Spain, David and I argued, my debit card was eaten by an ATM, and I woke up in the middle of the night with a debilitating migraine that had David looking up the cost of medical care for tourists.

There was a lot of bad. It wasn’t all bad and in fact I felt mostly relaxed while in Spain, but there was enough bad to reinforce the feeling that the universe continues to punish me for something that I’m not even aware of doing.

That’s ridiculous, I know. This is life and there are good things and bad things and if I could just remember to think more about those good things than the bad things, I could be a much happier person.

I want to focus on the good. I want to write pages and pages about the magical town of Sevilla and the sheer awesomeness of the architectural details we saw everywhere in Spain. I want to offer recommendations for places to try for tapas and let you know that Spanish in Spain is different than Mexican Spanish. I have lists to share – of American things we’d miss if we ever moved to Spain and things that Spain does better than America. I have nearly four hundred pictures to show off, many of which only offer hints of how mind-blowing everything was and really need some narration!

But I’m depressed. I’m still sick and I had another migraine last night. And it’s December, which has traditionally been a terribly hard month for me anyway.

So instead of writing about Spain, I wrote this.

I’m sorry.

Inside the Actor’s Studio with Ewokmama

Yes, I’m using a prompt for this NaBloPoMo post. Don’t worry – I wrote it on the right day. :) (I’m in Spain right now and that’s just how it’s got to be!)

  1. What is your favorite word?  Adore (back when I was too nervous to say that I loved David, I told him I adored him)
  2. What is your least favorite word? Irregardless (it’s actually a word, but it totally shouldn’t be!)
  3. What turns you on creatively, spiritually or emotionally? Humor. There is nothing like laughter to get me in the mood for just about anything.
  4. What turns you off?  When someone tries to tell me what I “really” think/mean/should do.
  5. What is your favorite curse word? I know this isn’t very original, but I do love the work fuck. I used to ride my bike down the street as a child shouting it into the wind. It’s very versatile, and even better when combined with a string of other swear words.
  6. What sound or noise do you love? Raindrops on the forest floor (which is funny because I don’t even like the outdoors).
  7. What sound or noise do you hate? An alarm clock buzzer, especially when used in a commercial!!
  8. What profession other than your own would you like to attempt? Maybe acting, which isn’t a far stretch from being an administrative assistant, honestly…but maybe I’d have more interesting things to wear and other people to do my makeup and hair.
  9. What profession would you not like to do?  Cleaning. OMG do I hate cleaning! I could not make it as a janitor.
  10. If Heaven exists, what would you like to hear God say when you arrive at the Pearly Gates? Oh…yeah, sorry about that. Here’s an endless supply of mojitos for your afterlife.

Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn't a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

***

School, Special Needs and Sugarcoating Childhood Cancer

Yesterday I met with Jack’s principal and the district nurse to update our 504 plan. We are getting access to a home educator three hours per week to work with Jack when he can’t make it to school. I have to give HUGE props to Jack’s teacher – she has really stepped up to get us support and arranged this meeting in the first place. I can’t even express my overwhelming gratitude toward her! I’ve been much too occupied with trying to get Jack’s health stabilized and was just going to wait on the school issue (especially since he was keeping up anyway). But it was done for me! People can be really amazing!

I brought a letter with me from our oncology office regarding the need for IEP assessment, as well. Back in the spring when I requested an IEP process be started, I apparently did not do it in the exact right way because the district ignored it and had the school work with us on a 504 plan only. I didn’t fully understand the difference between IEP and 504 at the time, so I didn’t push the issue. Since then, I’ve learned a lot more about supporting kids with cancer in school and seen that even this far out, new side effects can pop up. At Camp Okizu earlier this year it was made clear that IEPs are really important for kids with cancer because even if they aren’t showing any significant issues right now, late-term effects are very common. Baseline testing can be really, really valuable when/if problems pop up later.

So when Jack was hospitalized in August, I brought up the issue with the hospital social worker and she drafted a beautiful letter for us! I’ve been sitting on the letter because Jack has barely been IN school anyway – it could always come later, I thought.

The principal took the letter in stride, but the district nurse was clearly flustered by it. Immediately reasons why she thinks we don’t need an IEP came pouring forth. I don’t completely disagree with her – Jack has to be in school to get services and he’s barely been there at all right now. Plus, the IEP requires a lot of assessments and that can be strenuous.

But then the district nurse said, “Well, treatment has come a LONG way! Most kids don’t have any lasting effects!”

And then I kind of wanted to punch her.

I wanted to tell her about how few new treatments have been approved for use in children and that oncologists are still using the same drugs developed between 1950-1970. In fact, the FDA has only approved ONE new drug exclusively for pediatric patients in the last 20 years – despite the fact that the prevalence of childhood cancer has risen 20% in that same time frame*.

I wanted to tell her that she’s wrong – in fact, two thirds of kids will have long-lasting chronic conditions that are caused by the very treatment saving their lives.

I wanted to point out that while more kids are surviving cancer, side effects from treatment are still a huge challenge. Quality of life for childhood cancer survivors needs a lot of improvement.

I didn’t say those things, but I did tell her that Jack had been screened for sensory issues and further testing was recommended. I informed her that we’ve already seen an impact on his abilities in math and physical education. I told her we need a baseline in case he has complications later.

“Well, we don’t want to push him physically when he is going through treatment,” she said.

Ugh. First, you don’t need to tell ME that. Second, that’s not what this is about, lady! It’s about preventing further decline and ensuring the best possible future for Jack.

The nurse did point out that an IEP does not provide a home educator, which makes the 504 more beneficial at this time. But the home educator was apparently a special benefit anyway and it ends January 7th. Because of that, we agreed to stick with the 504 for now and then meet again to reassess in January (which happens to work anyway – not much to be done about any of this during the holidays).

I came out of the meeting with mixed feelings. I am happy that the school is supporting Jack with the 504 plan and there was absolutely no hesitation as far as that was concerned. I’m a bit concerned about future struggles related to the IEP and assessments, though. I’ve heard a lot of negative things from other parents trying to get IEPs for their kids and based on this interaction, I’m just not confident that this will be easy.

At least I’m getting better at dealing with hard things, right?

Later in the afternoon I picked Jack up from school. One of his classmates came up to ask me if Jack really did have cancer and how he got it. I told her yes, he does, and we don’t know how he got it – sometimes people just get cancer. She seemed like she had more questions, but Jack started pulling on my arm and she walked away.

I hope we didn’t scare her. I wanted to give her a better answer but I didn’t have one. As much as I’d like to deny the reality of what we are living with, sugarcoating it isn’t the right answer.

————–

* Source: Unsung Heroes by the American Childhood Cancer Association, published 2011. (This link opens a PPT file.)

Headache Season

Apparently headache season has begun. Most of this year my head has blissfully allowed me to go through life without threatening to randomly explode and I was very much enjoying it – until about three weeks ago. I don’t know if it’s the stress or hormones or the weather changes or a wonky alignment of the planets, but suddenly my head is either in great amounts of pain or threatening to be.

I’ve suffered from migraines all my life. As a kid, I didn’t know they were migraines – I just knew my head hurt and nothing seemed to help. I used to bang my head against the wall in desperation. It wasn’t until I was in my early twenties that I looked up these particularly bad ‘headaches’ and realized they were migraines.

This time two years ago I was having migraines several times per week. I tried various things and nothing seemed to help. It was like torture and I was going out of my mind! Then the abortive medication I took for them (Midrin) was suddenly taken off the market (apparently it had never been approved by the FDA!) and I headed to the neurologist’s office to see what else could be done. Because I have a sulfa allergy and the majority of migraine medications contain sulfa, my neurologist informed me that there were very few options. I could try Imitrex (which is a cousin of Sulfa, so might be okay) and if that didn’t work, I was left with Botox.

Uh, no. Please, no.

The neurologist prescribed a preventative called Topamax, along with the abortive Imitrex. Not only did the preventative make me utterly stupid (I started calling it Dope-amax) but I got break-through migraines anyway and the break-through ones ended up being worse! So I stopped the preventative and worked on being super strict with my diet and sleep routines. I stopped drinking any red wine at all because that definitely triggered sudden, severe migraines. Imitrex worked well enough and slowly my migraines disappeared as long as I was careful.

In the last two years, I’ve gone several months with no migraines at all. It’s been miraculous! I have no explanation as to why they’ve left me alone, but boy have I enjoyed it!

And now they are back in full, blind-in-one-eye force. I feel like I’ve been transported into Flowers for Algernon or Awakenings.

I still don’t drink red wine – or eat red grapes – and I have cut out chocolate, as well. But suddenly the migraines are back with a vengeance and seem unrelated to anything. Sure, maybe it’s due to the stress of having a kid with cancer but why NOW? We’ve been dealing with cancer for almost two years! It doesn’t make any sense to me.

And, as often happens with migraine medications, the damned Imitrex isn’t working well at all anymore. The medication reduces the pain to headache levels but I feel run down for days after I take it. Then the migraine comes back and the cycle repeats. As if that isn’t enough, my throat starts tightening when I take it now (perhaps an allergy is starting to develop?) and, last night, I had severe stomach pain afterward that nearly sent me to the emergency room.

So, I’m back to square one and feeling rather hopeless about it all. Why can’t my head just cooperate? Why are migraines so horribly difficult to prevent and control?

Do you get migraines? What helps?

What Killed The Video Star?

I was IMing with David this morning (as I do) and he told me about a song that he is surprised he likes (Harlem by New Politics), which led me to YouTube to check it out (I don’t like it). And then I fell into a rabbit hole of terrible music videos. It was just one after another as I searched for something that didn’t suck. I saw sex where it didn’t make sense, odd characters and costumes, weird runny gloop… I decided to put together a list so that y’all wouldn’t have to endure what I did.

Although I suppose you might get curious now. Sorry ’bout that. At least I warned you, right?

WTF? Videos

Miley Cyrus – Wrecking Ball (why is she making out with the sledgehammer?)Lady Gaga – Applause (creepy!)
MS MR – Hurricane (omg gloooooop!)
MGMT – Electric Feel (just BAD!)
Churchill – Change (holy headache!)
AWOLNATION – Sail (girl needs to lay off the cigarettes, clearly)
Imagine Dragons – Radioactive (is this a JOKE?)
Arcade Fire – Reflektor (um, nightmares)

I did find some passable videos. They weren’t bizarre or completely sexed up or lacking in any connection to the meaning of the actual song. They were just kinda boring, which was actually an improvement on the gloop.

SNOOZE Videos

Lana Del Rey – Summertime Sadness
Foster The People – Pumped Up Kicks
Pearl Jam – Sirens
Girl on Fire – Alicia Keys
Royals – Lorde
Rihanna – Stay

 

Finally, I did find a few great music videos that captured the feeling of the song perfectly and didn’t have any WTF moments! These are actually worth linking.

I Approve! Videos

Macklemore & Ryan Lewis – Thrift Shop
Anna Kendrick – Cups
Tegan & Sara – Closer

 

And then I gave up because THREE, you guys. I found THREE.

I remember back in the day when music videos were the big thing. And now? They pretty much suck. Boo, I say, BOO. Bring back the video star!

Have you seen any good music videos lately?