Trying To Look On The Bright Side

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.

Scattered

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.

Coping With Challenges

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.

Unresolved

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.

Hustle and Bustle

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…

Good Things

Cream of wheat (lumpy)

Pumpkin spice (in a latte or oatmeal)

Stomping on crunchy leaves in the fall

Raspberry or cherry almond (anything)

Lykke Li

Virgin America (and mini vacations)

The cool side of the pillow

Long sleeve cuffs that extend over my palms

Fleece hoodies

Caresses on the neck

The ability to keep certain thoughts and imaginings private

Wine

Migraine medication

Love

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All Grown Up and Nowhere to Hide

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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Goodbye, Me Time

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.

The Littlest Sandbagger

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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Truthiness Day 27: Sweetest Thing

Day 27 → What’s the best thing going for you right now?

It’s kinda funny to me that I have to write this one today because I’m in an epically bad mood.  I went to sleep too late last night with a migraine, woke up too early (it was pitch black still!  how could it be morning?), was antagonized not long after and the day was not much better from there.  There isn’t a whole lot of positivity going on in my brain today.  Instead I keep thinking about outstanding parking tickets and those people who think that everyone fits into either the conservative/Republican or liberal/Democrat boxes.  I love it when someone either pretends I am non-existent or says I am something that I’m not, don’t you?

Still, despite the black cloud over my head today I am functioning.  I can work and I can write.  I can pay bills and vote.  I can still love and hug and laugh (although it is harder).  I can eat cupcakes and drink wine if I so desire (or sweet tarts and vitamin water, if you insist on accuracy).  I don’t have a headache, which is a change from yesterday.  I have a wonderful husband (even if he does antagonize me in the morning) and child (even if he headbutts me almost daily) whom I love with all of my heart.

I have my life and livelihood and that’s a lot.