Trying To Look On The Bright Side

February 3, 2012 By 1 Comment

After all, we now get to enjoy:

  • Handicapped parking spots
  • Eaaasssy bedtime
  • More grown up time thanks to an early bedtime
  • An abundance of love and support from all of our friends & family
  • Seeing just what a sweet, kind, and strong person Jack is
  • Less worry about whether Jack’s getting enough to eat
  • Teeth brushing 3x a day without argument (just to avoid mint mouthwash)
  • Jack learning confidence early – if he can beat cancer, he can do anything!
  • Candy and sweets – Jack prefers pickles and turkey, so more sugar for us!
  • Awesome wish granting from Make a Wish program (if we can get Jack to think bigger than a toy)
  • The knowledge that we’re getting the full benefits of the health insurance coverage we’re paying for
  • Easy access to specialist doctors
  • A justifiable excuse to get delivery food and Starbucks
  • Legitimate reasons for sleeping in
  • Fewer disappointments with mail – most of it is fun mail!
  • Newly acquired nursing skills
  • Free books (even if they are about Cancer)

This list is a little tongue-and-cheek but, really, we do recognize all that we have to be grateful for and feel very lucky to be in the position we are in (under the circumstances). Cancer or not, we still have it pretty good in life.

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

Scattered

February 2, 2012 By 7 Comments

I’m burned out. I’m making stupid mistakes, like leaving food out on the counter overnight to spoil (at least three times now). I didn’t realize until the night before my dentist appointment that David had school at the same time and we had no one to watch Jack. I frantically texted everyone I knew within a reasonable distance to babysit (thankfully our upstairs neighbor came to the rescue!). Then on the way home from said dentist appointment, I ordered delivery food before being reminded that the same neighbor had signed up to cook dinner for us that night! Luckily, I was able to cancel the delivery. Not to mention I was decidedly upset when I ran out of Starbucks gift card funds this week. David pointed out that I can use my debit card, and he is right. But for some reason it was just another THING that set me off.

Most of the changes aren’t hard. I mean, catheter maintenance and blood draws are pretty easy. Meds take like 5 minutes to administer. Dressing changes suck, but are only once a week (and the hard part is done by David – I just focus on trying to keep Jack distracted with conversation as much as possible). We are taking turns with cancer clinic visits. Hell, Jack is even going to bed early most nights!

This should all be manageable but for some reason, it’s not; I’m scattered. I teared up last night when Jack told me he’s full of bravery and could share some with me for my own doctor appointments – he said it wouldn’t take from his level of bravery at all. The sweetness kills me.

His little face has ballooned with all of the eating he’s been doing thanks to the steroids. It’s really hard to see him changing so drastically and so quickly. The extra weight only serves to highlight the dark circles around his eyes and make them look more sunken. Combined with the lack of energy, the bouts of crying over things like having to drink water (it was seriously upsetting him – “my life is miserable!”), and the fact that his eyelids flutter the moment his head hits his pillow as early as 6pm…god, it hurts.

Meanwhile I am trying to get back into the swing of things at work and I have a ton of well-meaning (yet distracting) people stopping by my desk throughout the day. They all ask how Jack is doing or how I’m doing. They ask questions about treatment and about what’s next. Over and over. It’s hard enough to get work done in my current state without the interruptions. It feels like the life is being sucked out of me with every interaction.

I know with this post I’m kind of throwing myself a pity party. I don’t write it out to get sympathy or attention, though – I really just want to get it all out somewhere and see if anyone has suggestions on how to handle all of this better…I haven’t yet located a support group in San Francisco…

***

And for something a little lighter – check out my new site design! Princess Jenn took pity on me and cleaned the space up so it’s much calmer and runs a lot faster. She is fucking amazing and seriously saved me from having a breakdown. You guys should hire her.

Filed Under: Cancer, Cancer Mom, Illness Tagged With: , , , , , ,

Coping With Challenges

January 19, 2012 By 3 Comments

The coffee isn’t waking me up today. I’m unsure what to do about it.

This morning started off okay and then Jack got grumpy – he didn’t want to change his clothes. He cried while I changed him into a fresh set of pajamas (they still seem most comfortable right now with the soreness of the recent lumbar puncture). I held and hugged Jack and then he took his medicines and was happy again. I think when I left the house I took his bad mood with me, though.

Most of the time now I walk around feeling like I’m just on the verge of panic – like there is a tide rising and threatening to wash over me at any moment. I feel raw, as if my heart is on the outside of me and I’m waiting for it to be crushed. I guess I’m waiting for the other shoe to drop. I can’t get over the feeling that there isn’t more bad news coming.

I want to believe that Jack will not relapse. That we’ll be able to keep infections and colds at bay. That his treatment will continue to be like it is now with very few side effects. But the more I read on the subject, the more unlikely that all seems. What if his chromosomes come back abnormal at the end of the month? What if the chemo causes neurological problems or physical issues? What if that constant ache in his abdomen is more than just a symptom of the disease he is fighting?

I want to hide from it all. I probably won’t pick that book back up. This seems to be one of those unusual instances where I think I’d rather be ignorant. My ignorant thoughts were, for once, brighter than my informed ones, which doesn’t make much sense in our situation. This is the best cancer, right? The most treatable and curable? But where the FUCK did it come from?

I seem to also be stuck on the thought that I must have been a gigantic asshole in a past life. Holy hell, my life has been hard and it just doesn’t seem to stop! I felt like it was finally getting better – that things were on a more level path and I was letting go of so much angst. And really, I can see the progress I’ve made from therapy in how I’m handling all of this. I can see how much stronger I am and I can even appreciate that about myself. But life is dealing us a low blow now that it is smacking my kid around – the very person I’ve been desperate to protect these past 5+ years.

“I hate challenges,” Jack told me this morning. You and me both, kid! I’m tired of them. So very tired.

We’ll come out of this stronger; I know this. But I don’t want more strength – not if it means the shit is going to keep coming. I’ve had my share of shit and I’d like to pass on more.

Filed Under: Cancer, Cancer Mom, Illness Tagged With: , , , , , , , , , ,

Delayed Reactions

January 17, 2012 By 6 Comments

Jack’s out of the hospital. Thank goodness. Today he is at his first Cancer Clinic appointment getting an infusion of chemo. I’m looking forward to him coming home, and hope he isn’t too sick afterward.

I keep trying to tell myself the worst has past – that the prognosis is good, that so many cancer cells have already been zapped by the chemo, that the disease won’t progress. I know these things in my head. Still, my heart aches. I struggle to get out of bed in the morning, to eat, to do anything to take care of myself. When Jack isn’t here I don’t know what to do. What was life like before this diagnosis? What did I think about when cancer didn’t fill my every waking moment? What if Jack isn’t one of the 90% of kids cured?

I keep thinking about how all of this almost went undetected. I almost didn’t take Jack to the doctor. We almost didn’t opt for a blood test to “confirm” anemia. It would have been so easy to dismiss all of his symptoms as a combination of fighting off a cold and returning to school after a long break. It serves no purpose to think about these things but they are invading my mind nonetheless.

I am very much shell shocked. I got through the crisis period without completely freaking out, but I didn’t escape the freak-out – it’s just happening after the fact. My brain and body are not cooperating. I can’t think straight and I feel tired and/or sick to my stomach all the time. I started getting angry at the piles of boxes in our house – not that I don’t appreciate everyone’s thoughts and generosity but I just want to go BACK. I want to NOT need any of this stuff. I’d much rather have someone take this nightmare away. So when I look at the boxes and think about what they are for, I have this irrational anger…and then I get angry at myself. :P

I can keep myself busy some of the time. My friend Kurstan ventured out to Target with me this weekend and I bought storage for medical supplies and cleaning products. I came home and organized a bunch of the house, put away the laundry my friend Katie graciously washed while we were away, and started washing items we brought home from the hospital. I’m back to work this week, as well, but I’m having trouble focusing on the simplest of tasks. Maybe I need more coffee.

All of our friends and family (and even strangers!) are being so awesome and loving and kind to us. I really do appreciate it, despite this cloud over my head. I haven’t once felt alone since this all started – I feel a community of support behind our family. I just wish the occasion hadn’t arrived where we need this support…

Filed Under: Cancer, Illness Tagged With: , , , , , , , , , , , , ,

Hospital Missive

January 12, 2012 By 7 Comments

I’ve been sitting here in the hospital room listening to the DING DING DING DING of Jack’s vitals monitor. Apparently the kid has a low heart rate while sleeping – it’s been hanging out in the 50s tonight and the machine is not happy at all.

Today was hard. Jack’s energy has been completely zapped and he has seemed to be in a daze. He wouldn’t even answer yes or no questions. When he passed out from the Benadryl administered prior to a blood transfusion, tears broke through. This is all very sad – my little boy of 5 years has a terrible illness and is getting pumped full of toxic chemicals – A SHITTON of them. How did this happen?? It’s all very horrifying.

Part of the way through this blog entry, the machine started freaking out and flashing EXTREME BRADY while making a higher pitched DING. The Pediatrics resident came to check Jack out – his heart rate was dropping down to the 40s – and apparently it’s fine because his O2 level is good. Every three minutes for the past hour or so, I’ve been hitting “pause alarms” so that the machine shuts up about the damned EXTREME BRADY. When I get super worried I sniff in his ear to irritate him and wake him up – his heart rate goes up a bit then.

It doesn’t look like I’ll be getting much sleep tonight. I tend to be hypervigilant due to my PTSD and these alarms are not helping at all.

As much as I want him to get out of this hospital room, I’m also nervous about taking Jack home. Having medical staff right out the door is pretty convenient (at least when you need them). I can already imagine the number of times I’m sitting at home debating whether to take him to the ER or not.

Thank goodness for friends and family. Thank goodness for an amicable relationship with my ex. Thank goodness I have a strong marriage with David. I know these things are going to get us through the next three years, even if right now things are rough.

Thank goodness most of all for Jack’s strength and bright spirit. I’m going to help him kick Leukemia’s ass.

Filed Under: Cancer, Illness, Parenting 101 Tagged With: , , , , ,

Thank Goodness For Paranoia

January 7, 2012 By 11 Comments

Jack didn’t seem that sick. Something was off, though, of that I was sure (see last post). I tried to tell myself I was being paranoid but still…there was a tap-tap-tapping in my brain that wouldn’t go away. I thought to myself, “Maybe this is my mother’s intuition. SOMETHING has set off the alarm bells.”

Would we have caught this if Jack hadn’t hit his head while at his dad’s? I was worried he had a concussion because he was tired and complained of being dizzy. I watched him like a hawk for days…

It was weird – usually Jack woke us up in the morning right around 7:30. When that didn’t happen and I let him sleep in to see how long he’d go, he slept until 8. I went into wake him up but he was dragging. I sent him to school anyway, figuring he’d perk up when he got around the other kids. A couple hours later the school nurse called to let me know Jack felt like he was going to throw up and he looked really pale.

Home he went (with David) where he promptly ate lunch and went to work on Legos…seemed like he was fine! Until he spiked a fever.

Our batteries were dying on our temporal thermometer but Jack felt warm to me. I decided to take my own temperature to see what the difference was between his body temp and mine on the flakey thermometer – a two degree difference. He was curled on the couch with knee pain and a bad headache. I decided it was time to call the advice nurse.

The advice nurse couldn’t tell from my description over the phone whether Jack’s condition was a concern or not, but we figured it’d be best if we booked an appointment. Unfortunately, Jack’s pediatrician was out of town and there were no openings with the back up docs. I opted for a telephone appointment.

The telephone appointment with the doc went much the same as the one with the nurses. Doctor thought it could be mono or anemia. “Do you want to bring him in?” I said yes and we booked an appointment at the clinic.

Jack seemed almost back to normal that day. Except…what if the doctor hadn’t hesitated before leaving the room to glance back at Jack’s face? “He looks pale to me. Does he look pale to you?” he asked. Jack was definitely pale with circles under his eyes, even after 12 hours of sleep the previous night. The doctor gave me the option of having his blood tested; otherwise we could just get some liquid iron. For some reason, I opted for the blood test. I think I was being lazy – I didn’t want to give him vitamins if he didn’t actually need them. I thought confirmation was best.

I thought it was strange when the phlebotomist took several vials of blood. Why would they need all that blood if the doctor was just worried about anemia? Well…

Turns out Jack has cancer.

 

Filed Under: Cancer, Illness, Parenting 101 Tagged With: , , ,

Kiddo Has A Bug

January 5, 2012 By 3 Comments

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: , , , , , , ,

Unresolved

January 4, 2012 By 5 Comments

We had a good holiday. I missed Jack on Christmas day (he was with his dad in Washington) but we got to celebrate in our own way when he got back. Christmas day we hosted David’s sister, my sister’s family, and our friend Mike. It was our first time hosting Christmas dinner – with place mats and everything! – and it turned out pretty fabulous, if I do say so myself.

We rocked stockings this year. Our dog ate the stocking I had from childhood (two days before Christmas) and that was really sad. He also ate the stocking I had a friend create for David. Looks like we’ll be getting new stockings… In any case, it felt like a very grown up thing to be in charge of stockings in addition to the Christmas dinner. I was very much a mom, filling them with toothbrushes and hand sanitizer and such. (There were fun things, too, I promise.)

I got really depressed after the holiday was over. I wasn’t sure why at first (other than it’s December and it’s winter and I was tired) but upon thinking it over I realized a few things – the biggest of which is that my family is so small. I have David and Jack and then my sister who lives across the country. My mother is embroiled in her endless medical issues – in for tests every week and firing physicians left and right – and seems to be off on another planet. Spending time with my dad’s parents, while lovely, also underlined the fact that I don’t have a mom or dad to turn to these days. I am the grown up. How did THAT happen?

I then started feeling baby crazy. THAT was driving me mad because, holy cow, now is NOT the time! But despite the million reasons I could list why I didn’t want another kid right now, the little voice in my head and the ache in my chest wouldn’t go away. That just made me angrier – upset at my own biology, irritated at my brain grasping at straws in order to create connections that I seem to be missing.

I feel old. I feel like emotionally I’m being propelled into a reality that I shouldn’t be physically facing for another 15 years. Suddenly I’m worrying about older family members losing their minds as well as their fortitude, worrying about how many childbearing years I have left, and feeling as if I must have missed something in my 31 years. But when and where? My life thus far has been overwhelmingly full. Where is it that I could have possibly squeezed in one more thing? And didn’t I already have my midlife crisis?

Needless to say, the new year is here and I am unprepared. I’m doing what I always do – marching on as best I can – and hoping things fall in line. I just wish I could feel like I have more of a say in where that line is going and what tune is being played.

Filed Under: Domesticating, Growing Up, Holidays Tagged With: , , ,

A Very Ewok Birthday

December 11, 2011 By 1 Comment

Happy happy birthday to me!  My cake really made my day!

My husband worked with Jennifer at Beyond Buttercream to design THE MOST AWESOME cake EVER – Wicket the Ewok.  I felt bad cutting into the fuzzy guy but, man, is it delicious!!

Filed Under: Holidays, Photos Tagged With: , , , , , ,

Hustle and Bustle

December 5, 2011 By 5 Comments

Last week at work was brutal. I am not quite sure how I made it through. I think I’m still recovering.

Amidst the stress of work, I had THREE posts published elsewhere. I revamped and combined my prior posts about my dad for World Aids Day and posted it on Band Back Together, and I wrote a brand new piece for Postpartum Voice in which I talk about the details of my postpartum depression for the first time. The third I won’t directly link here due to its sensitive nature, but you can hit me up on Twitter or via email if you are interested in it (and haven’t already read it).

We’re still dealing with fear at home. Jack is sleeping with his bedroom light on every night now, which is a change from the first 5 years of his life. He now watches Dora the Explorer and Berenstein Bears instead of Scooby-Doo and Ben 10. We’ve acquired the Scaredy Squirrel books and “When I Feel Afraid.” Nothing seems to be particularly helpful. We may just have to ride this one out.

With that said, and while I know that this is a phase that kids Jack’s age go through, I’m wondering if some of the stresses his families are dealing with (unemployment in both households, for one) might be contributing and/or if school issues may be having an impact on him. It seems like he has more trouble sleeping and is tired more often these days.

Jack’s teacher has started sending his incomplete classwork home for him to finish. This is super fun (not)! I don’t even know what to do about that. For now we are just continuing to encourage him to finish his projects in class and emphasizing that we all want him to do his work well. This may be another area where the reward of money will motivate him (that’s how he potty trained)…hm…

On the good news front, I recently won a $500 Apple gift card thanks to my attendance and participation in a Twitter party hosted by LiveOn.com. WOOHOO!! The site is pretty cool – you can basically create a digital scrapbook of life’s events with photos and such and it’s got some nifty social media enhancements. I haven’t had much time to play around with it but I did create an account and will definitely futz with it. It looks fun!

I also won passes to the new Children’s Creativity Museum in San Francisco. I’m super psyched to take Jack there!

My birthday is at the end of this week and so the promise of cake and dinner with friends is keeping me in decent spirits. Oh and I’ve gotten nearly all of my Christmas shopping done and the presents are mostly wrapped, too! Now I just need to take down the Halloween decorations…

Filed Under: Growing Up, Parenting 101, PPD, School Tagged With: , , , , , , , , ,
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