Boy Of The Year

I’m writing to invite Jack to become an official Honoree for one of our campaigns: the Man & Woman of the Year. Man & Woman of the Year campaign is a national ten-week campaign where individuals compete to raise funds to help find cures for blood cancers. Candidates run in honor of the Boy & Girl of the Year, who are local blood cancer patients and survivors and sources of inspirations to others. The Boy and Girl represent thousands of patients who have been helped by LLS’s patient services and research, they are recognized at all events, in campaign marketing materials and on the LLS website.

I received the above from the Leukemia & Lymphoma Society at the end of January. I wanted to speak with Jack before agreeing to anything, as I knew it could go either way – on one hand, he loves to be helpful and I knew he would get a kick out of being “Boy of the Year.” On the other hand, he doesn’t much like talking about his experience with cancer and sometimes avoids being the center of attention. When I sat down to talk with him about it, however, I didn’t even finish the explanation before he exclaimed, “I’ll do it!” He was thrilled to be given this opportunity and said he would attend events, give interviews, anything they wanted him to do!

So, we agreed to participate in the program and Jack officially became the 2015 Boy of the Year for the Northern California Greater Bay Area chapter of the Leukemia & Lymphoma Society.

Photos by Colson Griffith Photography - www.colsongriffith.com

Jack and the Girl of the Year (Celia) get along wonderfully! Seeing them together at the events, it’s clear that the LLS chose the right kids as honorees. They are both so full of life and sweet as can be. They absolutely hold their own at the events we’ve attended, and they stick together like they’ve known each other all their lives. The bond was immediate.

"Photos by Colson Griffith Photography - www.colsongriffith.com"

At the kickoff event we attended, I spoke briefly about our experience when Jack was diagnosed while Jack stood next to me and imitated everything I said. The crowd LOVED him.

"Photos by Colson Griffith Photography - www.colsongriffith.com"

I also mentioned the fact that when we found out Jack had cancer, the oncologist told us that ALL was “the best kind of cancer” to have. What she meant was that ALL is highly curable in children, but at the time this led me to think that maybe Jack would receive 6 months of treatment and then we could go on with our lives. That was so not the case (as you know) and so it was a second blow when I learned it would be more than 3 years of treatment. I emphasized this in my brief speech and I am emphasizing it again – this is why we need organizations like the Leukemia & Lymphoma Society and all of the research and fundraising! Three years of treatment is too long for anyone, but especially for children.

Maybe with the help of LLS, we can get to  a 6-month treatment for these kids – if we can’t wipe out this horrendous disease altogether!

"Photos by Colson Griffith Photography - www.colsongriffith.com"

“We need YOUR help!”

This is why this campaign – very hopefully named Mission Possible – is important and why we are very happy to be part of it and promote the cause to wipe out blood cancers. We hope you’ll support the cause, as well, by donating to the Leukemia & Lymphoma Society, attending an event put on by Man & Woman of the Year candidates, and/or by purchasing tickets to attend the Grand Finale event at The Fairmont in San Francisco on June 6 (we’ll be there!). By supporting LLS’s efforts, you are supporting families like ours – and like yours.

"Photos by Colson Griffith Photography - www.colsongriffith.com"

Let’s Talk About Measles

There is an outbreak in the US. And it’s in California. And, more specifically, measles are in the county I live in. Patients have been treated for measles at the hospital where Jack receives chemotherapy treatment, even.

I’ve been really good about not freaking out, even though I have every right to freak out. I have no explanation for why I am not coming completely unhinged as the news reports more and more measles cases every day.

Both of my kids are in danger. Desmond, at 5 months, is too young for the MMR vaccine and chemotherapy has wiped out Jack’s immune system – including many, if not all, of the immunities he used to have. Jack attends public school and Dez goes to daycare. Jack won’t be able to get the live virus vaccines (MMR & Chickenpox) until a year post-treatment – so, March 2016. Dez will receive his immunizations after his first birthday in September (at least, I think that’s the case – Jack’s health status may delay that!).

Until then, it feels like my kids are sitting ducks.

I know there is a debate right now about keeping unvaccinated (by choice) kids out of schools. I am not convinced we can require everyone to vaccinate, but frankly, I am not arguing against making it mandatory to attend public school – it would certainly make me feel better to know that Jack was that much more protected against a nasty disease that could kill him while going about normal life.

At the same time, I can see the case being made that immuno-suppressed kids be kept out of school, too. I mean, the measles could kill Jack. So why wouldn’t I sequester him?

How can I do that, though? How can I take more away from Jack? He has missed out on so much over the last three years. He has fought so hard to beat cancer and to live as normal a life as possible. He missed half of kindergarten and first grade and so many other days of school, and it has had an impact on his educational performance, as well as his self-esteem. I don’t want to take more away from him!

Further, he’s in danger at places besides school. When I took him to the oncology clinic a couple of weeks ago, we were advised to put a mask on him while in the elevator because there were measles patients being treated at that hospital.

It hadn’t occurred to me that he would be in danger at the oncology office, of all places! And, COME ON! It’s 2015! Measles has no place being on the top 10 list of things I worry about!

In any case, have you ever tried to keep a mask on an 8-year-old? It’s near impossible for longer than 20-30 minutes. And what about a drooling, grabby 5-month-old? That’s just plain crazy-making! (It’s a fun idea for a party game, though.)

So, what I’m saying is…I’m relying pretty heavily on those around me to keep themselves – and us – safe. I’m relying on herd immunity to protect my kids from vaccine-preventable disease because I am powerless at this point.

And, unfortunately, there are many in my community that don’t even think of my kids when they refuse vaccinations. Instead, they think measles is not a big threat to them. They think a vaccine is more dangerous than the disease itself.

All I can think is…is this real life?

Write a Letter to Santa and Help Wish Kids!

Between November 7 – December 24, visit your local Macy’s store or Macy’s Believe online to submit your child’s letter to Santa and help make dreams come true for Make-A-Wish kids around the country. For every letter received through December 24, Macy’s will donate $1 to Make-A-Wish (up to $1,000,000).

Jack LOVES the idea of Santa. In prior years he has written Santa several letters, made him cards, even even built a shrine in his room. At eight years old, it seems that he might be starting to waiver in his devotion and questioning a bit more, but still – he wrote a letter to Santa this year, asking for a haunted house and asking that Santa respond if he got the message. He included his very own “return receipt,” which was a drawing of some toys and dashed lines to indicate where to cut.

LettertoSanta

Santa dutifully responded and Jack was beyond excited. He just knows Santa will come through for him.

David and I set to work looking for a toy haunted house. We didn’t find much, but we didn’t want Jack to feel let down by Santa, especially on the last year he’s likely to believe in him. So we bought a dollhouse and developed a plan to paint it, sand it, and turn it into something haunted. I was also able to find a “monster bucket” on (post-Halloween) sale so that should help us haunt the place up.

This may seem like a lot of effort, but Santa is just one small thing that adds magic to Jack’s life amid all the hardship he endures due to Leukemia. Make-a-Wish helped in this effort this summer, as well, when Jack was granted his wish for a TARDIS bedroom makeover. Jack is still delighted by his room and with the granting of his wish, we saw a happiness in him that we haven’t seen in a long time.

He's in love.

He’s in love.

This holiday season Macy’s is helping to bring magic to more kids with their Believe Campaign by working with the Make-a-Wish Foundation! This year marks the seventh year of Macy’s Believe campaign, which invites believers of all ages to drop off letters to Santa at any Macy’s store by depositing them in special, designated Santa Mail letterboxes. You may also submit your letter online at Macys.com/believe.

For each letter received by December 24th, Macy’s will donate $1 to Make-A-Wish, up to $1 million, to grant the wishes of children (like Jack!) with life-threatening medical conditions. Last year, Make-A-Wish granted the wishes of more than 14,000 children across the United States. A wish is granted every 38 minutes!

Here in the Bay Area, Make-A-Wish is working on granting the wish of 4-year-old Joysse, a girl from San Mateo who was diagnosed with Leukemia. For her one true wish, Joysse asked for a princess party complete with purple and pink decorations, a princess dress with a cape and crown, cake and ice cream and more! She is so excited that she asks her mom, Gabriela, about it every day. Her party is scheduled for January, but as a surprise, Macy’s will be helping her prepare for her wish with a very special celebration at the San Francisco Union Square location.

To help kids like Jack and Joysse this year, make a trip to Macy’s or visit them online to submit your child’s letter to Santa. It’s totally free for you and yet you will get the satisfaction of knowing you’ve helped bring some magic back to the life of a child with a life-threatening illness!

stockings

I was selected for this opportunity as a member of Clever Girls and the content and opinions expressed here are all my own.

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.

 ***

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.

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