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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

Leukemia, Section 504, and Education Planning

April 11, 2013 By

I met with Jack’s first grade teacher, the school principal, and the district nurse yesterday to discuss a 504 assessment for Jack. If you aren’t familiar, Section 504 is part of the Rehabilitation Act that protects students with disabilities. Since Leukemia is a chronic, life-threatening illness that impacts his learning, working, and performance of manual tasks, he qualifies as disabled. Once a 504 assessment is made and it’s determined that a student qualifies, an IEP (Individualized Education Plan) is typically created to address the student’s needs in school.

Obviously, it’s taken me a while to get in gear and ask for this. The irony of requesting this assessment now is that Jack has caught up to his peers in most areas of concern since he started back to school in October. With that said, he is failing Physical Education, missing quite a bit of school, and his self-esteem and confidence are low. His stress level is difficult to manage even on a good day.

I was nervous going into the meeting. Not only am I still getting used to being an advocate for another person – a person whose needs have changed dramatically in the last year – but I’ve also read complaints about parents’ frustrating experiences with schools when enacting 504. I worried that I might get pushback from the school because Jack really is performing well. Thankfully, the school officials were all very understanding. I feel like we are off to a good start in helping to get Jack some relief.

In our hour-long meeting, I summarized Jack’s medication and treatment routines, explained how his health and side effects of treatment can impact him on any given day, and shared my concerns related to the challenges these things present to his education. Mainly it boils down to the fact that Jack puts forth so much additional effort in order to meet standards because of these challenges that it has compromised his emotional health and feelings about school.

We recorded the following challenges that impact Jack’s ability to learn:

  • Sensitivity to temperature changes
  • Bone and joint pain, soreness
  • Catheter in chest
  • Lowered muscle definition
  • Difficulty with coordination
  • Delayed reflexes
  • Shortness of breath
  • Dizziness
  • Weakness/fatigue
  • Attention/focus impacted by chemo treatment levels
  • Monthly steroid impacts mood and ability to cope with expectations
  • Medication taken at school, can get headache near time of receipt

Based on these things, the school will make accommodations for him to aid his learning in the following ways:

  • Additional time to complete assessments and assignments
  • Extra opportunities to repeat and explain information and directions
  • Extra time to respond to information and questions
  • Teacher will provide parents with work when child can’t attend school (to be completed if he feels well enough)
  • PE accommodations, such as alternate responsibilities/tasks
  • Teacher will remind Jack to eat and take snacks to accommodate his lack of appetite and slowness/distractibility when eating

This plan is a bit vague, but it should be enough to give the teachers the ability to customize the help they give Jack without making it a big production in front of his peers. I’m hoping that the additional understanding of Jack’s health issues from his teacher’s will take some of the pressure off of him and maybe that will even result in less self-injury! That’s my hope anyway.

I felt so relieved when I walked out of that office! I alternately wanted to cry and giggle hysterically. I didn’t have to push for any of this and it felt like I was part of a team that has Jack’s best interests at heart. There are people who have access to things that I don’t and they are going to help my child – we aren’t alone and we don’t have to spend tons of time blindly fumbling around the educational system.

Instead we can spend our time blindly fumbling our way through the parenting of our chronically ill kid! It may be a small victory but I will take it!

Filed Under: Cancer, Cancer Mom, Issues, 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

Misunderstood…or Complicated?

March 4, 2013 By

Recently I had a discussion with a friend about things people have said about us that just doesn’t make sense. In her case, an ex accused her of hating fun! Which was not only strange, but absolutely ridiculous. Who hates fun?! Anyone?

This probably happens to a lot of people. Sometimes it’s laughable and easily dismissed. Other times it’s insulting.

In my case, I’m a pretty calm person. I’m also rarely offended and I have almost NO ego connected to anything. I think most of the people I know would consider me to be a pretty easy-going, agreeable, and nice person. Yes, I have an opinion and I’m not afraid to share it; however, I am ecstatic to hear what other people think about a situation, too. I don’t by any means think my opinion is THE WAY to think, and I don’t try to shove my opinion in anyone’s face.

With that said, there are times when I get accused of being the opposite of what I consider myself to be. And it is absolutely BAFFLING to me. If it’s from someone who doesn’t know me well, I usually just shrug it off. Or laugh because ME? Really?

But sometimes it comes from someone I know. And I wonder what the hell I did wrong and why sometimes the history of our relationship can easily disappear in an instant. How suddenly someone I know and trust can think I am:

  • Judgmental
  • Intimidating
  • Overly feminist
  • Controlling or passive aggressive
  • Paranoid
  • Exaggerating or straight out lying
  • Pessimistic or trying to ruin others’ fun

And if you think I *am* any of the above – why keep me around? Why not drop me like a hot potato? Do yourself a favor and stay away if you think I am (or anyone else is) toxic!

Sometimes my words get twisted. I once stated that I like to live in towns that have malls (to me – that implies a certain size and level of civilization). To my ex-husband, this became “Crystal loves malls and consumer culture.” Nevermind the fact that it was rare for me to step foot in one and shopping has never been on my list of things to do for fun. Ever. Suddenly I grew horns and years of history were erased because I didn’t condemn malls like he did.

Not too long ago I said that I didn’t like the show Mike & Molly, and the response was, “Is it because you don’t like fat people?” Uhhhh, whaaaat? Why in the world would you think that? Actually, I just don’t particularly care for most sitcoms. I wasn’t a Friends fan, either! It’s just not something that tickles my particular funny bone. Do YOU hate fat people? ‘Cause now I have to wonder about you!

And then there was the time that a longtime friend thought I hated homosexuals because I had once said I’m not interested in getting busy with lady parts. Again, what the hell? Somehow my interest and preference for males was viewed as anti-gay just because I didn’t share a passion for lady parts? So if I were to say that I’d much prefer chocolate over vanilla, does that mean I think vanilla is the devil and should be banned and everyone who likes vanilla is the devil?

‘Cause whoa! That’s some deep shit right there. And I should maybe not speak ever again if that’s true.

I’m an introspective kind of gal, so when these things happen I immediately wonder what I’m doing wrong. How is it that people who should know me quite well could even for a moment consider that these things might be my point of view? And if I’m NOT doing something wrong, am I invisible? Am I speaking a different language?

Does that word not mean what I think it means??

I try to think of it from the other person’s point of view. Like, it probably has very little to do with me and more to do with that person – either their own feelings on the subject or a generalization they’ve made. But generally these situations arise around people with whom I mostly communicate just fine. That that doesn’t lead me to a clear answer, either.

I just don’t know why this happens. I just really want everyone to know that my opinion has nothing to do with the validity of yours. It’s okay to disagree – different points of view, different experiences and conclusions, are a huge part what makes life interesting! At least to me. If you want only people who have the same views as you do in your life, I give you a free pass to walk away from me right now – no explanation necessary. I’m not that kind of friend and I know it. I accept the consequences of not being a Yes Man.

Readers, what are your thoughts? Is there something in particular at the heart of misunderstandings? Is it just too common for people to look for the worst in others and mind-read? Am I seriously bad at communication?

Filed Under: Getting my groove back, Issues Tagged With: , , , , , 9 Comments

The Inconsiderate Visitor

February 6, 2013 By

I haven’t been doing well. I don’t know exactly what is causing it (out of the many possibilities) but I’m depressed and struggling every day now. I’m worried about everything and when I’m not worried I find it hard to care at all. And I’m always very, very tired.

I think being on guard constantly – just waiting for something else to come up (because my life seems to always have something crazy waiting in the wings) and throw a wrench in the works – has taken its toll. Even small, relatively fixable things have me reeling. I think it’s just that there is always something – whether it’s Jack trying to stab himself in the eye or changes at work or an illness or some nut leaving a garbage bag full of weed trimmings outside our house (yeah – that happened this weekend)…it’s kind of like I’m in a boxing match and I should just stay down already because I’m just going to keep getting walloped if I stay in the fight.

I’m getting help. I’m going to a depression group to try to get back into the swing of self-care. Unfortunately even that is a bit depressing – during the first session I was singled out as having a reason to be ‘legitimately’ depressed and there were audible gasps when I admitted my kid has cancer. So yeah…my kid has cancer and that sucks and OF COURSE I’m depressed, right?

Except I can’t be! I need to work and keep up with the health insurance. I need to help Jack with his homework (it takes him extra effort to do the math portions) and administer medication and take care of my pets and various other chores. I can’t be depressed. I have to suck it up and get out of bed and get Jack to his appointments or school or to his dad on time. There is no time for depression! How dare it pay me a visit when I so obviously can’t entertain even a second of it!

I know I’m hard on myself. David tells me so. The doc I saw yesterday told me so. I know I’m depressed and instead of being nice to myself I sit there and tell myself that I shouldn’t be depressed – Jack is doing great! We have a house! We have jobs! We have a ton to be grateful for.

I need this depression to be over so I can get back to enjoying my life.

And I could use a few breaks here and there, too.

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

The Littlest Disciplinarian

January 22, 2013 By

Living with cancer is no easy feat (duh) and the medications certainly don’t make things any smoother. There are side effects galore and dealing with those on a regular basis can be be SO incredibly frustrating. Aside from the physical effects, Jack has had difficulty with memory and regulating his emotions. Then there are those weeks when he’s on the steroid – and we are all tip toeing around hoping that we don’t make a joke that offends the kid and sends him into a depression spiral.

Jack’s done so amazingly well this past year dealing with all of the cancer crap that it really should come as no surprise that he’d stumble a bit. But still, it was surprising AND alarming.

I don’t recall when it started exactly, but sometime in the last year Jack started to get really upset with himself for forgetting things or doing things wrong and he would react by hurting himself. Sometimes he would hit himself in the face, sometimes he’d bang his head against the wall, and we even saw him push his thumbs into his eyes (cringe!). Not too long ago he came home from school and told me he’d put himself on time out during recess after a teacher asked him to stop bouncing on her shoulders.

We’ve told him over and over again how much we love him, how it’s our job as his parents to protect him and not let anyone hurt him – including himself! We explain that it’s okay to make mistakes and that we are there to remind him of what to do when those mistakes come up. His job is to try to do better in the future – not to punish himself for making those mistakes! This hasn’t seemed to get through to him, though.

Sometime before Christmas I sent a message to Jack’s Case Manager at the hospital to ask for a referral to a therapist. It was clear that Jack was having some anger management problems and we were at a loss as to how to help him express himself better. We were referred to the department’s social worker, who, unfortunately, happens to be the least helpful person who very much would like to help EVER. And so she called me and got some information and then sighed and expressed her sympathy and said she would get me some information so that we could take Jack to therapy. Except she didn’t.

A couple weeks later when I saw her at the clinic and she still hadn’t gotten me that information (and it was STILL an issue), I reminded her. Alas, no help came.

Then, in the epic awesomeness (ha) that was last week, we had another incident that scared the shit out of us. Jack was working on his homework but kept getting distracted by a paper monster sitting nearby. When David attempted to move the monster so that Jack could concentrate, Jack got upset and grabbed the monster and threw it. David reminded him that throwing things isn’t okay, and Jack responded by grabbing his pencil and aiming it right at his own eye. David grabbed it before he could do any harm, thank goodness.

But holy crap! Our six year old almost stabbed himself in the eye with a pencil to punish himself for throwing a paper monster!

So it was time to take matters in my own hands and I made an appointment for him to see a doctor that afternoon. After some discussions with the pediatrician’s office I was then referred to the intake psychologist in the psychiatry department, who gathered more information about our situation and decided we should probably skip the regular intake routine and go straight for an appointment ASAP.

Had Jack had any big changes or stressful situations in his life over the last year? Oh, gee, where do I start??

Has he ever said he wanted to die? Um, no! Shit! He’s six!

Thankfully, we got Jack an appointment with a child psychologist scheduled for Friday. I was told to keep all sharp objects, medications, cleaning supplies and other harmful things out of his reach. Which is just NOT something you expect to EVER hear in relation to your first grader! (And, well, he doesn’t have access to those things anyway! But David did hide his safety scissors from him just in case. And now he’s a bit behind on homework since pencils suddenly posed a threat.)

All of that and Jack wasn’t even on the steroids last week. He started those today!

The appointment went well. Jack liked the therapist and even drew him a picture that he got to keep (which is pretty rare). He and the therapist came up with the idea that rather than trying to hurt himself to teach himself a lesson and help him remember, he would instead draw a picture of what he wasn’t supposed to do and tape it to the wall in his bedroom. This has seemed to work so far – Jack now has a “DO NOT JUMP ON MOM” picture on his wall.

This week is steroid (Decadron) week, though, so we’ll see how it goes. We see the therapist again on February 4th. I’m hoping things won’t be too chaotic in the mean time. We could all use a less eventful week.

Filed Under: Cancer, Cancer Mom, Issues, Parenting 101 Tagged With: , , , , , , , , , , , , , , 3 Comments

Tips For Caring For A Kid With Cancer

December 4, 2012 By

When Jack was diagnosed with Leukemia, I looked for tips on how to prepare our household for the journey ahead. I didn’t find much in the way of practical tips, so I’ve made my own list in the hopes that it can help others. If you have something to add, please feel free to add your suggestions in the comments!

Get a CaringBridge (or similar) website – this way you only have to go to one place to tell all your friends and family what is going on. It will save you a lot of grief!

It’s a good idea to keep five million different types of food in the house – you never know what the chemo-affected appetite will call for. The kid may suddenly become sensitive to sweet stuff and prefer salty stuff, for instance.

Buy foods that have individually packaged servings to avoid throwing away leftovers. You won’t want to feed your kid anything that is even remotely questionable.

It’s a good idea to have soothing tea on hand for the kiddo, as well, such as the Traditional Medicinals ‘Just For Kids’ Throat Coat or Tummy Comfort.

Buy hand sanitizer in bulk and place it strategically around the house, particularly near food items, and in the car and your purse and the kid’s backpack. Throw in some Clorox wipes, too.

Pills can be administered by using various liquidy substances (and you may find yourself trying them all): pudding, yogurt, applesauce, peanut butter, nutella, whipped cream, jello, jam, chocolate syrup. You can also try FlavorX. Crushing the pills into any of these substances or making them into candy is an option, too.

Don’t argue or joke with a kid on steroids – it’s just not worth the drama.

Stock up on items (perhaps disposable) that you won’t reuse and can’t wash quickly enough – drinking glasses, silverware, towels.

A pill organizer is a godsend. I prefer a pill organizer that has slots for multiple times per day. It’s best to organize the pills into the little compartments a week at a time – you can then easily see what refills you might need.

Teach the kid how to let his friends know about being careful around any dangling medical apparati. We let everyone who plays with Jack SEE his Broviac catheter so that they don’t forget it’s there and accidentally pull at it.

Have two thermometers on hand. That way you can cross-check temperature readings if something looks weird or you’re feeling extra paranoid.

If you are doing dressing changes (with a Broviac catheter, for instance), get some adhesive remover to make it easier.

Get some books to help your family (especially kids) understand what is going on. Often these books are free from foundations like the ACCO or your social worker can recommend some titles. Some of our favorites are The Famous Hat, Little Tree, and Taking Cancer to School.

Attend activities for families dealing with cancer. The support is amazing, and you can gain so much perspective from others’ experiences.

Stock up on cozy things – soft clothing, pajamas, lovies, and blankets. When a body aches or a child needs comfort, soft things are the BEST. Jack’s favorite pajamas are long-sleeved flannel and button up the chest – this way he can be warm and cozy while he’s getting a dressing change.

An adjustable, compartmentalized organizer box is fantastic for keeping medical supplies such as Heparin, specimen tubes, and dressing supplies in.

Embrace convenience – meal delivery services, drive-thrus, prepackaged meals, protein shakes.

Assign a friend to screen medical information in books or on the internet – they can then relay the important information to you MINUS the horror stories.

Avoid and relieve burnout:

  • Get out of the house/hospital/etc. Don’t worry about what people might say/think/etc about it – take any kind of relief you can get during this super stressful time. This can mean a vacation, a stiff drink, physical activity – what relieves you may vary from what relieves someone else.
  • Don’t be afraid to ask for or accept help. You need it – otherwise you WILL get burned out. Cancer is a long journey.
  • Help includes financial. Accept money offered. If you don’t end up needing it, you can give it back later. There are ALWAYS surprise expenses that insurance or foundations won’t cover.
  • Take a nap. It’s easier to handle things if you’ve had rest.

Consider getting a prescription sleep aid and an anti-anxiety medication for yourself before problems arise – it’s likely that your sleep will be interrupted at some point, and panic attacks often hit at the least convenient times.

You can’t be too cautious or careful. If you feel like you need to take your kid in to see the doctor, DO IT. Better safe than sorry!

Hang in there and take it one hour, minute, second at a time. Somehow, you’ll get through this.

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

Juggling Schedules With Two Working Parents

October 10, 2012 By

Aside from our current issues with cancer and medications and such (which I’m sick to death of talking about), we’ve had a very challenging time with getting into a routine for taking Jack to school and commuting to work. I’ve spent a lot of time (while sitting in traffic) wondering how in the world other two-earner households manage it, particularly when living in a big metropolitan area.

Currently, I have some flexibility on my work hours but in general I work 9-5. David works 9-6 and his hours are NOT flexible.

Our plan was to have David take Jack to school in the mornings (school starts at 8:10) and get to work by 9. Jack attends an after-school program that is open until 6:15, so I had planned to work 8:30-4:30 so that I could pick him up in plenty of time before the end of the after school program.

Unfortunately, traffic here has completely exploded lately. Our commutes, which used to take about 45 minutes each way, have expanded. Today it took me TWO HOURS to get into the office. When combined with delays in getting out of the house due to medication administration issues, mornings have been filled with stress. We’ve both been late to work several times now. I left work at 4:30 yesterday and got to Jack’s school at 6; he was the last kid left waiting to be picked up. And then that leaves us with two hours to get home, get Jack’s dinner prepared and eaten, administer his medications (two of which have to be taken an hour after dinner), get him bathed (if there’s time), and get him to bed.

We’ve been failing at bedtime, that’s for sure. We’re lucky if he’s asleep by 9:30.

How in the world do others in this area make their schedules work with their kids? Surely not every household has a stay-at-home-parent or family member! Do the rest of them have nannies? Not that we could afford that… And I wish part time work was an option! We can’t afford that, either, even if I could find an employer to pay me the hourly rate I’m getting now for being there only half the time.

It’s all kind of ironic because I’m an executive assistant by trade. I manage schedules and make impossible meetings happen all the time! I can’t seem to do it for my family, though. I can’t think of a solution.

Filed Under: Issues, Parenting 101, School, Working Mamahood Tagged With: , , , , 7 Comments

SOCS: Cozy And Safe

October 9, 2012 By

I’m having a terrible day. Jack is struggling to take his Maintenance medicines and I’m struggling to cope with that and all that it could potentially mean. When I saw this prompt on my friend Jana’s blog, I felt relieved to have something simple to write about and to be reminded of the things that help keep me sane…even if they are things that also drive me crazy.

Today’s (totally optional) prompt: What makes you feel cozy and safe?

Pajamas make me feel cozy and safe. Something about the warm, the softness, the bundled up feeling. Maybe it’s because I wear them while sleeping and so somehow associate them with feelings of safety while I’m unaware. I have countless pairs of pajamas in my drawers.

Curling up with my son or my husband, smelling skin and hair while sharing body warmth also makes me feel cozy and safe. If I can cuddle up with these two people, anything that is bothering me is eased.

Lastly, my cats – they actually give me a sense of security when I’m home alone. Not because I fear that someone might break in – my cats would be useless for that! – but because I creep myself out with thoughts about ghosts. I figure if there are any ghosts around, my cats are gonna see ‘em and take care of them for me – or at least warn me that they’re there. I know this is completely illogical but it helps me feel safe anyway!

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This was my 5 minute Stream of Consciousness Sunday post. It’s five minutes of your time and a brain dump. Want to try it? Here are the rules…

  • Set a timer and write for 5 minutes.
  • Write an intro to the post if you want but don’t edit the post. No proofreading or spell checking. This is writing in the raw.
  • Publish it somewhere. Anywhere. The back door to your blog if you want. But make it accessible.
  • Add the Stream of Consciousness Sunday badge to your post.
  • Link up your post over at Jana’s.
  • Visit your fellow bloggers and show some love.
Filed Under: Stream of Consciousness Sunday Tagged With: , 8 Comments
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