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: , , , , , , , , , ,

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

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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: , , , , , , , , ,

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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Goodbye, Me Time

September 8, 2011 By 10 Comments

Frustration, baby – I has it.  I warn you, I’m feeling a low currently and this post isn’t going to be uplifting.  Perhaps it has something to do with listening to Jack hate on his homework for the last hour – is this what I have to look forward to for the next 12 academic years?  If so, I may need some more anti-depressants.

This whole Kindergarten routine has pushed us back into the days where Jack cannot seem to entertain himself for any amount of time.  Instead I am attending to him constantly – packing his lunch, picking out his clothes, making sure he gets time to watch his shows, urging him to get dressed, walking him to school, [going to work and taking care of others all day,] making sure he finishes his homework, playing with him, feeding him dinner, making sure he is bathed and brushes his teeth and reading books at bedtime and telling him to go to sleep 30 minutes later when he is still calling for me and and and…

By the time Jack goes to bed I am worn out.  Well, to be honest, when I get up in the morning I am worn out.  When I’m not corralling Jack in some direction or another, I am trying to keep my house from looking like an utter disaster or trying to give our animals some attention or squeezing in a shower or perhaps a little downtime with the husband…ya know, CATCHING UP.  I’ve returned to eating granola bars instead of real meals and started buying smoothie-type protein drinks again.

It’s like having a newborn again except it comes after a period of some autonomy for Jack.  You know, like when your kid has finally started sleeping through the night and you get used to it and then BAM, molars start coming in and he’s up every 30 minutes all night.

I would cry more about this but I don’t have the energy.

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The Littlest Sandbagger

August 18, 2011 By 6 Comments

My high school English teacher nicknamed me Sandbagger.  He was not very happy that one of his best students refused to move into AP English.  When I would complain about something (because I am a complainer), he would say, “If you don’t like it, move into the AP class, Sandbagger!”  He couldn’t understand WHY I didn’t want to go into the more advanced class.  I just rolled my teenager eyes at him and asked, “Uh, why would I want to do MORE work for the same education? What am I going to get out of it?”  He may have said something about college, but I was never much interested in that.  It probably didn’t help that I was dating a musician with dreams of becoming a rock star.

My sandbagging tendencies never got much better.  What can I say – I love to excel at being mediocre.  I would rather be busy working on a hundred things at once that I know I will get just right instead of doing just a couple things that will take forever and not turn out like I wanted.  I figure it’s some sort of odd combination of laziness, perfectionism, and a need to check things off my list every day.

So I guess the current situation with Jack in school shouldn’t surprise me much…

When I picked him up from school today, Jack’[s teacher mentioned to me that he is having trouble using scissors.  I told her maybe he is just getting used to using the “big kid” scissors at school – he’s been using the plastic scissors at daycare.  But then she said that Jack was holding the scissors pointed down and cutting toward the floor.  Uhhhhhh, what?  He certainly knows better than that.

Also?  He is writing his name starting with the k and working to the left.  Every time.  Oh, and when she asks him what a word says he just says he doesn’t know…

When I told her today that he can write many words just fine and READ, she was surprised.  Jack is tricking her!  For some reason he doesn’t want her to see that he knows these things already.

He is totally sandbagging.

I’m trying to re-examine my own drive for mediocrity in order to make some sense of what Jack is doing and try to encourage him to demonstrate his actual capabilities…yeah – no dice.  If I had the answer, perhaps I’d be a college grad by now or maybe I’d be making the near-six figures others in my field are making.

Until I figure it all out, I will just have to cross my fingers and hope Jack gets over this or some brilliant person is able to convince him he should show off his skillz more.

Any fellow sandbaggers out there have ideas?

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Filed Under: Parenting 101, School Tagged With: , , , , , , , , , ,

Day Three

August 17, 2011 By 1 Comment

Jack did great the first two days of kindergarten.  He mentioned feeling nervous both days but was excited, as well.  On day one he said he couldn’t wait to go back, and on day two he came home with a ‘happy note’ for being helpful during the day – he was pleased about that and liked that it had an alien in a spaceship on it.  He was in such a good mood (and likely also tired) last night that he took a bath without arguing and fell asleep within about 10 minutes of David saying goodnight.

Today is day three and it hasn’t started off so smoothly.  This could be my fault – I changed the morning routine up a bit.  We are in the middle of switching to satellite TV so he couldn’t watch his Ben 10 show while eating breakfast.  Jack usually gets dressed during the commercials, but since we were using netflix streaming, there weren’t any.  I had him get dressed before David put Spiderman on for him, and Jack made note of that change.

I also gave him something other than his normal yogurt & breakfast bar to eat – instead he got a bagel with cream cheese and an orange.  He freaked out halfway through eating the orange because he had torn one of the wedges in half by accident…a meltdown was narrowly avoided by me removing the “damaged” orange wedge and telling him not to worry about that piece and just eat the good pieces.  Whew.

He was pretty much fine walking to school.  He said he was a bit nervous when we saw the playground.  Then he couldn’t find the friend he made yesterday with whom he had allied after she complained of being bullied by the boys.  He was antsy standing in line with his class, and clingy when it was time to head into his classroom.  He broke down in tears as we got to the door and cried, “I don’t think I can do it!  I don’t think I like school!”  I tried to reassure him that it would get better, that soon he wouldn’t feel nervous when going to school anymore.  He didn’t seem convinced but after going through the kissing hand routine, he trudged into class.

My heart hurt for the little guy as I walked home and then headed to work.  I am trying not to dwell because I do believe that he will like it soon and that this is just the transition nerves…but of course I will worry about him today and will continue to worry until he does LIKE school (I mean, I could be wrong – maybe he won’t like it, as apparently his dad didn’t).  After all, he has a long road ahead of him and it’s going to be painful for both of us if he doesn’t like it.

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Letting Go

August 11, 2011 By 2 Comments

Today is Jack’s last day in daycare.  He’s been with G for over two years (a miracle when you think back to all the daycare dramas early on in his life) and made some awesome little friends there.  G’s house is basically Jack’s third house – there were many weeks there where he spent just as much time there as he did at my house or his dad’s.  G feeds him and teaches him and celebrates his victories and birthdays.  Jack was potty trained there before he was at home!

In the last 2+ years, G has taken only ONE unscheduled day off – for Jury Duty.  One day, you guys!  She is simply amazing.

I’m having a hard time walking away from this lady.  She is one of the most reliable, dependable, trustworthy, and caring people I have ever known – it has been a BLESSING to be able to put Jack in her care.

I don’t think it’s hit Jack yet.  He knows today is his last day and that he’ll have a goodbye party, but all he could say was that he was hoping for presents.  :P   We tried to tell him this isn’t the kind of thing you get presents for.  In any case, he starts school Monday and I’m guessing somewhere in that week he’ll really start to miss G.  I know I will!

I had a difficult time coming up with a gift that conveyed how much we love G.  What we ended up with was this poem made into an artful poster by Etsy artist MySoulShines and matted/framed:

They Will Remember

by Eileen Koscho

I take care of your children.
I love them.
I teach them.
I clean them, and I feed them.
And when nighttime comes,
my heart worries about them
I take care of your children.
I see their first steps.
I hear their first words.
I share their happiness, and
I feel their hurts.
I take care of your children,
as if they were my own.
And when they are grown, and
no longer need me,
My love will be a part of them
deep within the heart of them.
They will know that I was there for them unconditionally.
And they will remember!

 

This morning it occurred to me that I should have had a coffee mug or something made with Jack’s artwork to give to her.  Dang it!  Maybe I’ll ship that to her…

Here is a picture of G with Jack on his birthday (she is so cool – she got him the alien space ship Legos):

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