Trying To Look On The Bright Side

February 3, 2012 By 2 Comments

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: , , , , , , , , , ,

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 12 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: , , ,

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: , , ,

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: , , , , , , , , ,

Tackling Fear

November 21, 2011 By 1 Comment

Jack has suddenly become uncharacteristically afraid of everything.  He can’t go into another room of the house by himself AT ALL.  When he goes to the bathroom, he requires that I stand outside the door – he needs to be able to see me but I have to make sure to turn away so I can’t see him (he’s very private).  This morning he freaked out because he ‘couldn’t stop peeing.’  WHY he wanted to stop midstream is beyond me…

We’ve talked to him and cut out the scary stuff – no more spooky books or Scooby Doo until he feels safe again.  He’s gone back in time and is now watching Super Why!, Blues Clues, and Dora the Explorer.  Chip and Dale is his favorite, which is great but sometimes (like last night) we lose that DVD and the other stuff he has to choose from includes Monsters vs. Aliens, Finding Nemo, How to Train Your Dragon…all of which are apparently too scary.

We talked about his fears on the walk to school this morning.  He admitted he felt afraid when people get mad at him – he worries he’s going to go to jail when people get mad at him.  When I asked where he got that from, he said his step-uncle went to jail as a kid.  I have NO idea what that’s about – I’ll have to talk to his dad about that one.

Apparently this is a stage that many 5-6 year olds go through but man, is it weird!  It’s especially odd since he’s never been afraid of much – he loves monsters and aliens and dragons!  Holy regression, Batman!

We’ve talked about various things that Jack can do when he feels afraid (sing or pretend he is a fierce dragon and can chase away the fear) and I think I’ll get some books to reinforce these ideas.  I know there is a series called Scaredy Squirrel that would be helpful.  Anybody have additional recommendations?

Once again, he’s surprised me with an issue that I never thought we’d face.  Ahhhh parenthood!

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

Mixed Bag

October 31, 2011 By 4 Comments

We had Jack’s parent/teacher conference almost two weeks ago and things since then have been fairly calm.  I don’t know if it’s the fact that Jack knows we adults are working together to keep him in line or if we are all just being more organized and routine about everything.  In any case, the conference was pretty positive, even with the mixed bag of “your kid is brilliant but he has trouble staying motivated to finish his projects.”  His kindergarten teacher is willing to let him read special books that we provide if it will encourage him to finish his work, and she is supposed to be moving his desk so that he sits near some girls who are better at finishing their work and cleaning their desks.  We’re hoping their habits rub off on him.

School went really well last week.  Jack got a happy note every single day!  Woo hoo!  We no longer hear “I hate school!” all the time.  One morning when we were running late and I had to break the news that Jack wouldn’t get any playtime prior to the bell ringing, Jack surprised me with, “Well, Mom, that’s okay! I’ll have recess later!”

So things seem to be improving there.  I’m cautiously optimistic because, as the parenting gods have taught me, as soon as you say something positive about how well things are going, it all falls apart.

Honestly, though, things aren’t exactly going GREAT.  My husband lost his job on Friday and that is also a mixed bag.  The job was pretty awful and causing major stress to him and us so it’s not like we’re sad.  I’d been encouraging him to look elsewhere for some time but, as I’m sure many of you know, it can be difficult to look for work while working full time, taking classes, and dealing with family stuff.  In any case, the job ended rather unceremoniously on Friday and we traded the stress of him having a shitty job for the stress of him having no job.  We are angry at his ex-employers yet relieved he doesn’t have to go back there.  We’re happy that he has plenty of time to find a new job now but worried that the lack of job will be a liability in getting a job.  And, of course, the financial implications are not fun to think about.  That house we wanted is now pushed further into the future.  But what are ya gonna do?

As for my mom’s health, her various organ and head scans came back clear and so it doesn’t look like she has any evil diseases lurking.  She got a hysterectomy Friday so she is recovering from that and once I am both less stressed and less ill (I spent a good month transitioning to a new preventative migraine med; now I’m fighting off my second cold in 6 weeks) I will go visit her.

So, that’s life lately.  This, and my work with Band Back Together.  We went non-profit, did you hear?  We got our state designation and have applied for federal recognition.  I’m on the Board of Directors, as well.  I’m damned proud of the growth over there.  If you don’t know what the heck it is – I encourage you to check it out.  It’s a group blog where we invite everyone to submit stories survival and get support and kudos for being all ‘eye of the tiger.’  We have stories about post partum depression, cancer, bullying, friendship, hope, single parenting, caregiver burnout, etc. and are expanding all the time.  I would like to formally invite you to join our Band.

By the way, Happy Halloween.  I’ll be over here eating candy corn and peanut M&Ms.

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All Grown Up and Nowhere to Hide

September 28, 2011 By 11 Comments

I keep sitting down to write and nothing comes out.  It’s been the same with talking.  David told me to talk the other night and I didn’t know where to begin.  I guess I’ll begin here with what I said first then – I said one thing and everything else just flowed.

I hate our house.  It’s too small, too drafty, too difficult to keep organized, and kills my allergies.  We’d really, really like to move.  We are saving like crazy in the hopes that we can buy a house next year.  Meanwhile the market isn’t looking as promising as it was earlier this year (hopefully that’s just because it’s nearing the end of the year) and it feels like our savings plan could be derailed at any moment…which brings me to…

David’s job sucks.  His commute is an hour each way and the job is high stress.  Prior to Jack starting kindergarten, David had arranged to start working from home in the afternoons so that he could pick Jack up from school.  This hasn’t been the best arrangement, honestly, since a lot of David’s work is on the phone and Jack gets bored when David can’t play with him and doesn’t like to stay quiet.  But, well, we figured it was a temporary solution and there were a few changes that would be coming down the pipeline that would make it all easier.  Except then a change came that said that David couldn’t work from home anymore due to asshattery by others.  Arg!  (We are still in limbo waiting to see if this is negotiable.)

There is an option of an after school program for Jack.  That costs money, of course…and that would mean delays on house buying.  It also means Jack is in school for longer during the day when he already doesn’t care to be there.  (On the plus side, his homework would be done before we picked him up for the evening.)

We’ve thrown around some other options but nothing has really crystallized yet.  So we wait and hope that the working from home option is reinstated.

Meanwhile, we’re still in a bit of agony over this school maladjustment.  Jack’s been acting out more and his teacher always has some piece of criticism, it seems.  It finally dawned on me that it might be a cultural thing, as the school is pretty strictly focused on academics (Jack’s classroom has homework 4 nights a week, and the other classroom has it 5 nights a week; I know of another school in the district that sends home activity-based homework for the weekends only).  The teacher (maybe the school?) seems to have an attitude of “what skill can’t this kid do yet?” rather than “what skills can this kid build upon?”  I am not the only class mom to notice some worrisome behavior with regard to self-esteem in the kids.

While I do think that Jack will learn a lot at this school, I’m wondering if emotionally this is not a good fit for him.  He is a sensitive and emotional individual and that isn’t likely to change (i.e. see his parents).  On the other hand, maybe he’ll learn some coping skills that could be useful later?  (He has to learn them from someone other than me; I am notorious for my crappy coping skills.)  And, regardless of whether it’s a good fit or not, do we even have the option to be choosy?  It is public school, after all.  And, really, would private school be different and different enough to be worth it?

And that’s when I go back to wanting the house like NOW.  ‘Cause we’ll move out of this neighborhood almost certainly and he’ll move schools almost definitely.  We’d have some sort of indication of whether this is just what a kindergarten transition is going to be like for Jack or if it’s THIS kindergarten that is the issue.

So, we’re in a holding pattern on the school front as well as on the job front.  In addition to those two things…

I spoke to my mom last night.  She has been dealing with ongoing health issues (the medical mystery tour, if you will).  Some time ago, probably close to 10 years ago, it was discovered that my mom had a benign tumor on her pituitary gland.  She was given hormones to shrink the tumor and then sent on her merry way.  When other weird issues started cropping up, they were dismissed as peri-menopause symptoms; however, recent tests show she is a good distance away from menopause still at age 49.  Unfortunately, she is already showing signs of bone loss and she now has a CT scan on her pancreas and an MRI on her head this week to look for tumors.  Not to mention that she is going to have a hysterectomy as soon as she can because of complications from endometriosis (except she has to wait to see what’s up with her cortisol – she may have Addison’s Disease!).

Needless to say, I feel very much like I want to crawl into a hole and hide from all of life’s complications.  I am young, dammit, and I don’t want to be dealing with all of this shit.  I feel overwhelmed and ill equipped to handle even one of these things at a time but all of them at once?  Ugh.

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