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Yet Again, I’m Blogging About Mental Health

May 15, 2013 By

Today is Mental Health Month Blog Day. Mental health – and illness – is a topic of great importance to me and something I’ve written about before. It’s importance has only grown as I’ve gotten older. My experiences with mental illness have led me to get involved in helping others through sites like Band Back Together and I try to speak about my experiences openly and honestly whenever possible.

Did you know that a quarter of Americans experience a diagnosable mental health disorder every year? It’s highly likely that you or someone you know (or SEVERAL someones you know!) is dealing with mental illness. And yet, “research published in the Journal of Health and Social Behavior (Vol. 41, No. 2) finds that 68% of Americans do not want someone with a mental illness marrying into their family and 58% do not want people with mental illness in their workplaces.”

Whaaaat??

This is why it’s important to talk about mental health!

I'm Blogging for Mental Health.

I was diagnosed at age 15 with depression after I read an article in a magazine. Mental illness runs in my family – my dad, my mom, my brother, my grandmother, and cousins have been diagnosed with various problems – but I was one of the first to receive a diagnosis and treatment. Once I was diagnosed, a number of my family members realized they struggled with the same issues as I did and sought help. Our family life improved drastically after we got help.

Getting help was the best thing I ever did – for me and for my whole family.

I thought I knew everything I needed to know about depression by the time Jack was born, over 10 years after I was initially diagnosed, but then I experienced Postpartum Depression and PTSD reared its ugly head. I threw myself into therapy once again, this time taking a multi-pronged approach with group therapy, skills building classes, and individual therapy along with medication. I went through a variety of these intense therapies for about four years before I felt like I could take a break.

Treatment has been tremendously helpful. In many ways, I am a different person than I was before that very intense therapy. I grew up with so much trauma and while that is common, it’s not easy to cope with. I came up with some very creative ways of coping but the coping didn’t end when the traumas did. And because I was so busy coping, I wasn’t living.

But treatment alone would not have done it for me. I needed community. I needed friends and family. And as difficult as it was to reach out, I did. And my friends and family kept me going throughout my treatment.

Now my son struggles to cope with the challenges in his young life, partly due to genetics and partly due to his experiences with cancer. I am especially thankful these days that I took the time to help myself! I am strong enough now to help him. I can tell him that it’s okay to be sad and that he doesn’t have to just CHEER UP and GET OVER IT. I can help him grieve and move on so that his feelings won’t haunt him for years and years. And I can show him how to ask for help from family and the medical community.

He doesn’t have to be alone.

It is my hope that – eventually – no one will have to go through mental illness alone. Mental illness was something I struggled with by myself for a long time and it wasn’t until I got help from others that I truly started to find healing. It was 100% worth it.

I encourage you all to share your experiences and to reach out to others – whether you are the one struggling or you know someone else who is. Even if the results are small, they make a difference and can change a life.

Filed Under: Getting my groove back, Issues, PPD Tagged With: , , , , , , , , , , 6 Comments

Walking For Wishes

April 18, 2013 By

One of the hardest parts about this portion of the cancer journey is the lack of attainable milestones. There are three phases to Jack’s treatment regimen, and we’re in the third and longest portion – Maintenance. While Maintenance is supposed to be the least intense phase because the treatments are more spread out, they stretch out across two and a half years. Jack started Maintenance in October 2012, so our next milestone is…

March 15, 2015.

That’s a long way off. Right now it feels like the end of treatment will never come. It seems like we have an endless number of doctor appointments, medications, procedures, blood draws, and dressing changes ahead of us. And through March 2015 we’ll surely worry about fevers and infections and side effects and fatigue and keeping our jobs and paying bills.

Rather than focusing on the depressing difficulties ahead, we distract ourselves. One way to do that is to create other things to look forward to, which Jack has done through the Make-A-Wish Foundation. Last year he met with the Bay Area chapter of Make-A-Wish and submitted his wish to meet Lady Gaga (go check out his video!). We’ve been patiently waiting for his turn since.

Recently Lady Gaga had to cancel her tour due to her own health challenges. Not only are we sad to hear that she is having health problems, but we are bummed that the granting of Jack’s wish – a milestone we were looking forward to – will be delayed, as well. That wish means a lot to our whole family. It means hope and inspiration and excitement and happiness and light in the dark. It means some manner of relief, which is difficult to be found during a cancer battle no matter how many people offer support. I’m sure you can understand why we are a bit fixated on it.

With Jack’s wish being delayed and new waves of exhaustion settling upon us, we decided to distract and rally ourselves with a new goal: the East Bay Walk For Wishes. The Walk For Wishes is a 5k walk that raises money for the Make-a-Wish Foundation. The East Bay Area chapter hopes to raise enough funds to grant wishes to sixteen children – a total of $120,000.

Our team is called Jack’s Juggernauts and we are (at the moment) eleven people strong! Our team aims to raise $7,500, which is the average cost of ONE child’s wish. My personal goal is to get to $1500 and right now I’m only a little over $400 away from that. I know some very generous people!

Many of you have just finished your taxes and are either getting back refunds or bemoaning your tax bill. Either way – you can do yourself a favor for next year and get a tax deduction by donating to our walk. You don’t have to itemize for donations to count and, in many cases, your employer will match your donation.

If you would like to help us out in our efforts to rally our family and help out kids who are facing life-threatening medical conditions, please donate. Any amount helps.

Support Jack's Juggernauts!

Filed Under: Cancer, Cancer Mom, Issues, Milestones Tagged With: , , , , , , , , , Leave a Comment

Better Safe Than Sorry

April 17, 2013 By

Jack has missed a ton of school lately. So it goes for the kid with Leukemia, right?

The week before last, which was his Spring Break, Jack spiked a slight fever and was diagnosed with an ear infection and ruptured eardrum. This happened the day before we were all due to fly to Maryland to help out my sister’s family with their new baby. Jack ended up staying behind with his dad and step-mom while David and I flew out to Maryland. We were heartbroken that Jack couldn’t come with us. It felt wrong to go without him but ultimately we figured out we wouldn’t likely be able to all go if we postponed anyway. And babies are only new for so long!

Jack’s ANC (the measurement of his immune system’s ability to fight off infection) was on a steady decline due to the infection. He was borderline neutropenic (551 – the neutropenic threshold is an ANC of 500) on Wednesday and very low energy with sweats, so I made a judgment call to keep him home.

So he missed most of last week and he’s only been to school one day this week. He’s finished with his antibiotics and ear drops but on various days has woken up complaining of aches and pains or, on Monday, feeling “like I have disgusting liquid going up and down my spine.” I have no idea what that means but it sounds crummy!

He had his monthly clinic appointment on Monday afternoon; he had an exam, a chemo infusion and blood drawn for labs. His ANC had rallied to over 1,000 and the doctor confirmed that his ear was healing. Yay!

Yesterday he went to school, but he’s out again today due to stomach pain, an earache (in the other ear!) and a “watery throat feeling.” (Can you imagine calling into work with that excuse?) It seems he’s sickly more often now, despite having come through last year with flying colors. Perhaps it’s the accumulation of over a year of treatment?

Jack usually doesn’t ask to stay home; instead, I’ll overhear some “ow”s or see him clutching his side or notice that he is getting overly frustrated about something small like putting his arm through the sleeve of his jacket. Then I ask him what’s going on and it’s like pulling teeth to get that info out of him, particularly if it’s anything related to the bathroom – he is so incredibly embarrassed to talk about that. In fact, he asks me to forget it was even mentioned! So I assess his symptoms and determine if there are any medicines he can take – tylenol, claritin, tums, etc… Sometimes, like today, I ask if he wants to try to go to school and see if the medicines kick in and he feels better (sometimes distraction is the key!). In the past we’ve tried just taking him to school but a couple times ended up turning around halfway there anyway so that he could go home and throw up… He rarely has fevers so there is not a very clear indicator of whether he should stay home.

Even more confusing is the fact that Jack is like the opposite of The Boy Who Cried Wolf. Hell, he barely mentioned his ear bothering him before he was diagnosed with a ruptured eardrum! The kid seems to have a high tolerance for pain. (I’m pretty sure he gets that from me. The day I got a concussion and still considered whether I could make it to work comes to mind…)

Sometimes Jack stays home and feels better within an hour or two. Most of the time he’s mildly ill and just needs extra rest. Rarely does he actually have an actual illness that requires quarantine. So it’s fairly often that I struggle with the idea that we’re jumping the gun on keeping him home.

When your kid has a life-threatening illness, though, you pretty much live and breathe the motto “better safe than sorry.”

Luckily, as noted in the recent 504 meeting with the school, he’s doing great at keeping up in school. He’s getting 100% on his tests and assignments. The biggest problem with him missing school is the stress it causes him – despite how well he’s doing, he worries a lot about falling behind. He’s such a worrywart!

Despite feeling under the weather, Jack worked on some schoolwork his teacher sent home and finished four pages at home today. At the very least, his willingness to do the schoolwork reassures me that he’s not trying to play hooky in some elaborate reverse psychology scheme. Hopefully I’ll have a few more years (and we’ll have cancer out of the way!) before he pulls something like that.

Filed Under: Cancer, Cancer Mom, Illness, Parenting 101, School Tagged With: , , , , , , , , , , , 2 Comments

The Beginning (My Submission For The LTYM Show)

March 13, 2013 By

I recently auditioned for the 2013 Listen To Your Mother show in San Francisco. I was not one of those chosen to join the cast for this year’s show (a mere 14 out of 54 auditioners), but I was happy just to audition and read my words aloud. Sometimes you don’t realize how powerful something is until you hear it out loud – and see others’ reactions to the words spoken. After reading my piece, the two reps for LTYM and I let out the breath we’d been holding. The reading was intense – just like the days described!

This is an edited version of the raw, harried one that was published over a year ago. I’m proud of how it turned out and wanted to share it even without the benefit of spoken word. I think that this story perfectly describes the ups and downs I experienced with Jack’s diagnosis.

The Beginning

It began when my 5-year-old son Jack seemed less energetic than usual. His temperature was slightly high, but he didn’t have a fever. He had aches in random parts of his body. Weirdest of all, he was becoming extremely frustrated with his favorite activity – Lego building – and seemed to be losing dexterity when trying to fit the pieces together.

While his symptoms were all minor and inconsistent, I couldn’t shake the feeling that something was off. I booked a clinic appointment to get him checked out.

Naturally, Jack perked up the afternoon of the appointment. I even thought about canceling the visit but my husband encouraged me to keep it just to be safe. I felt a bit silly – he was probably just fighting off a cold! I was totally going to be dubbed a paranoid parent.

“Doctor, my son can’t put Legos together! I think he might be dying!”

During the exam, Jack was his smiley, goofy self and barely seemed sick at all. It figures, I thought.

The pediatrician suggested that Jack was probably fighting something off, and maybe he was also low on iron. If I wanted, I could give him iron supplements.

He then turned to leave the room but glanced back at Jack and paused… “I know he has a light complexion anyway, but does your son look paler than usual to you?” I said yes, definitely, and I pointed out the circles under his eyes, as well. The doctor then asked if we wanted to confirm anemia with a blood test. Sure, I said. I didn’t want to have to come back in a few days if Jack still had this weird bug or give him vitamins he might not really need.

Much to my surprise, Jack didn’t get a finger prick like I did when they tested my iron during pregnancy. Instead, several vials of blood were taken in the lab. I thought it was strange, but I was too busy trying to calm Jack’s fears about the needle to ask any questions. And by “calm Jack’s fears,” I really mean “hold him down bodily.”

Despite the traumatic blood draw, we went home feeling somewhat reassured. The doctor had even told me I could send Jack to school the next day.

The next morning the test results were online before I even got out of bed. I opened them immediately…

Okay, so, hm… low neutrophils? What are neutrophils?

Decreased platelets? What the heck does that mean? And what is WBC Other?? Jack’s been trying to tell me for years that he’s an alien. Maybe he was onto something!

Or maybe that is just what happens when someone has low iron or is fighting something off. His white blood cells are at the higher end. And what do red blood cells do again? That’s probably not good that those are low… Okay, lemme go look at the iron test…

Well…his iron looks great! Yay!

But…uh…what does that mean for that other stuff then?

I then did the absolute worst thing a parent can do when faced with a medical mystery – I started Googling. And I’m sure you could guess what kind of results I got – Dr. Google said it could be anything from a staph infection to Lupus … TO CANCER?! My heart in my throat, I shut my laptop and headed to the phone – I needed to talk to a doctor ASAP.

The doctor wasn’t in yet so I spent some agonizing time waiting for a call back. To be safe, I decided to keep Jack home from school. While I was thinking about calling in sick to work, the doctor called me back. He told me that Jack was anemic, but not due to low iron. He wasn’t quite sure what was going on, so he had to speak with a specialist. He said he’d call me back.

By this point, my anxiety was through the roof. Thankfully, I didn’t have to wait long for the second callback. The doctor told me that Jack would be admitted for monitoring – probably overnight – and I needed to take him to Oakland where the pediatric specialists were located. Then he said something that really alarmed me:

“I’ll be watching Jack’s case closely, and here’s my direct extension in case you have any more questions…good luck.”

Oh God, I thought! This doesn’t happen! Doctors from big HMOs in San Francisco don’t give you their direct extensions! SHIT! Something is VERY wrong!

I hung up and buried my head in David’s chest to cry for a few minutes before taking an Ativan to control my panic. I then steeled myself to get Jack dressed and out the door without alarming him. I packed snacks, his magnedoodle, and a few books, and off we went.

Things are kind of a blur from there – stats and vitals were taken by a million doctors and nurses and interns. I think everyone except us knew what was going on with Jack – they just didn’t want to tell us until it was 100% confirmed. They did say that his blood test had caused some alarm because it appeared he had some odd cells and that could either mean they screwed up the test (which was the hope!) OR, if the test was accurate, he could have leukemia. They wanted to repeat the blood test to make sure.

At the end of that day, I was really hoping for Lyme Disease. My friend Becky said she was on Team Mono. I decided that would be okay – just please, NOT cancer. Please, something less dangerous than that.

The next day, it was confirmed that my son had Acute Lymphoblastic Leukemia and we had a 3.5-year battle ahead of us.

It was truly just the beginning of our journey.

Filed Under: Cancer, Cancer Mom, Illness, Issues Tagged With: , , , , , , , , , , , 6 Comments

Cancer Sucks

February 10, 2012 By

We are waiting for blood test results to see whether or not Jack will start Phase 2 of his cancer treatment on Monday. I got a notice in my email that his lab results were in but they haven’t posted his white blood cell counts yet, so I can’t see whether he is neutropenic or not. The waiting is hard!

We met with the oncologist yesterday (update on CaringBridge) to go over what Phase 2 of Jack’s treatment entails. It was a LOT of information – 26 pages or so. To be handed a page FULL of side effects for each of 8 different medications…I wanted to throw up. One medication requires us to wear a mask and gloves while giving it to him. Another can cause heart damage and result in a lifelong restriction to lift no more than 50 lbs. Many of these disrupt learning ability (some temporarily, some long-term) and it sounded likely that special services at school will be needed for Jack later on…

And that’s when it hit me – why this is different from managing a chronic illness like diabetes. The medications Jack is getting to treat his disease are hurting him, as well. To treat the disease, we have to wreck  parts of his body and then give him more treatment to help with those things. It’s a fucked up cycle and every time I think about giving my child toxic chemicals, I feel like I’ve been punched in the gut. It’s all wrong.

So today it’s hitting  me anew how much I HATE CANCER!

I think part of what got me through Phase 1 was knowing it was short and that Jack wouldn’t be losing a bunch of weight and hair. His hair has started to go a bit, but Phases 2 will likely take it all. His chubby cheeks will go, too.

I dread it. I can’t stop thinking about my dad and watching the weight melt off of him when he was sick. I imagine Joe is going through something similar, as his father (Jack’s namesake) died of Melanoma. It’s hard not to feel like it’s especially unfair that we have to watch our son go through a disease that attacks his immune system after what we went through with our fathers. It feels like we are cursed or something.

(Jack’s blood test results were just updated – if my calculations are right, his ANC Is 770 and he is all set for starting treatment Monday. Yay…)

We will get through this. We will, we will, we will. But it’s so hard to walk around and participate in daily life when my heart hurts so much.

***

Today I donated to the Leukemia & Lymphoma Society to help my friend Beth reach her Team in Training Goal. Please help  me spread the word about this fundraiser. I’d love to see Leukemia wiped out.

Filed Under: Cancer, Cancer Mom Tagged With: , , , , , , , , , 7 Comments

Kiddo Has A Bug

January 5, 2012 By

Jack has been sick on and off over the last week or so. We were both hit by a 24 hour stomach flu thing back on the 28th, but recovered pretty quickly. When he came home from his dad’s that Sunday, though, he was very low energy and that has continued with a bunch of other random symptoms. He left school early on Tuesday because he was pale and complaining of a stomach ache. He will be fine one moment and then complaining of some malady the next.

We were a little skeptical since his symptoms kept changing and moving around and he’s not crying and whining a bunch, but his temperature has spiked on and off. I have no idea what this illness is! So far his unpredictable and constantly changing symptoms include: low grade fever, stomach ache, headache, sore throat, leg pain (behind the knee), body aches, fatigue, and mood swings – but NO cough or runny nose. All very strange.

I spoke to the doctor this morning, who mentioned it could be the flu (but we were both questioning since there is no cough or runny nose) or possibly a staph infection (eek!). My google-fu also showed that the symptoms could fit Lyme Disease, but he’s never been bitten by a tick as far as we know. I don’t think I’ve ever had the flu (certainly not as an adult), so I’m not a good judge of that.

I’ll be taking him in to see the doc later this afternoon, but I’m unsure how that will go. Today the only complaint he’s had was a headache and upset stomach. He is still low energy, as well, but woke up without issue this morning and even though he laid down (on his own) to take a nap, he didn’t fall asleep. I’ll be taking a tired, headachey kid to the doctor and they’ll probably just tell me to get that kid some rest! (Which, he’s been home all week from school, minus that 3.5 hours on Tuesday.)

I worry because Jack is a pretty articulate kid and generally easy going. I wouldn’t put it past him to be suffering from something terrible and yet try to reassure me that it’s just a cold. :P

Filed Under: Illness Tagged With: , , , , , , , 4 Comments

Half-asleep mumblings

June 2, 2010 By

Poor Jack has a cold for the first time in a while.  He doesn’t have a fever but he is visibly exhausted, snotty, and quite hacky.  Last night he woke up twice bawling.  I *think* he hit his head when tossing and turning but it’s hard to say because he was pretty out of it (now I know what David deals with when I try to talk to him while half asleep).  After getting him to bed the second time, I had trouble falling back to sleep and kept thinking I heard him crying.  I’m tired today.

It astounds me that I dealt with regular night waking for almost two years straight when Jack was a baby while holding down a crazy-busy full time job and getting absolutely no down time.  How did I do that?  How does anyone do that?  After being so unused to it now, I feel like a complete zombie today.  It’s a miracle that I can type!

Thank goodness we’re in an easier phase overall!  It’s days like today that remind me why I haven’t had a second child yet.  The easier things get with Jack, the harder it gets to go in the second child direction…

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Filed Under: Illness, Parenting 101, Sleep, Working Mamahood Tagged With: , , , , , 2 Comments

The First Man I Saw Crying

May 30, 2008 By

Annika linked to a photo collection of male actors crying today and I had an immediate reaction to the photos.  I know this is completely different from what I usually write, but I think it’s worth sharing here.  I realize this could be a sensitive topic to many, so feel free to pass on by today.

His strained voice called to us from the only bedroom in the basement apartment. “Kids, come in here. I have something to tell you.”

The air thickened around me. I shuffled my seven-year-old sister and five-year-old brother from the living room into the bedroom where our dad stood bent, hands braced against a dresser for support. The three of us lined up inside the doorway, blue eyes wide and staring at the broken man before us.

“Sit down,” he whispered.

My sister and brother complied, but I stood there frozen. At nine years old, I knew just enough about the world to know when something was wrong. When my father began to choke on his tears, I thought of my step-sister’s tentative words to me during a recent visit…

“Your dad has AIDS. That’s why he keeps going back into the hospital.”
“He does not have AIDS! I would know if he did!”
“Yes he does, Crystal. I overheard my dad talking to your mom about it.”
“I don’t believe you. You’re lying!”

Fear flamed in my chest and I ran away from that room. I didn’t want to hear what my dad had to say, didn’t want him to know that I knew already, and most of all I didn’t want my step-sister’s words to be true.

I grabbed my dad’s car keys on the way out the door and locked myself into his rusty grey VW Beetle, sobbing. I kept hoping that he would come after me, that he would tell me that I had no reason to run away and no reason to be afraid. He did not come. I sat alone and cried until I was dry, until my head felt water-logged and achy. I wiped away the tears and waited what seemed like hours until the swollen skin around my eyes returned to normal. I steeled myself and walked back into the apartment.

My dad’s courage had left him when I ran out the door and he said nothing of what he had been about to tell us. We ate lunch instead and the day continued as normal. Life went on for a little while.

My siblings and I pretended (or forgot) that the breakdown had never happened. It was a shock to us when our dad died some time later, and we believed it when we were told that Meningitis and Encephalitis had killed our father.

AIDS did not cross our minds until years after it changed our lives.

Filed Under: Family Tagged With: , , , , , 4 Comments

Still sick

January 21, 2008 By

First off, thank you to those who responded to my last post.  I really, really appreciate your supportive comments.  I closed my eyes when I hit publish because it always freaks me out to write about such a sensitive subject but luckily your replies were all very reassuring!

Now, does anyone have any tips on getting a sick toddler to eat?  We had cut down on breastfeeding a lot in the past few months and we were at about 50/50 with solids.  Jack has refused almost everything (even standard favorites such as cheese, yogurt, toast, blueberries, and bananas) over the past few days.  He won’t drink expressed milk or pedialyte, and is sparing with the water.  He had one solids meal a couple of nights ago when he seemed to be perking up but has since gone downhill.  His diet of the past few days consisted of raisins and crackers, and those in very small amounts – about 5 raisins and 3 crackers at a time.  I wouldn’t worry about it so much but I have to go back to work tomorrow.  He is not likely to eat anything while I’m there.

So yeah, we’re still sick.  Joe got better, I got worse, and Jack has been miserable fairly steadily.  This illness is eerily reminiscent of the RSV we dealt with a year ago.  At least Jack isn’t puking everything up this time around.

Send healing vibes our way, please!

This is the only bite of this cracker he took.

Filed Under: Illness, Nutrition Tagged With: , , Leave a Comment