It’s A Bittersweet Summer

Jack has been out of school for over two weeks now. I officially have a 2nd grader! (gulp)

Since school is out, our shared custody schedule has switched. Jack is at my house on most weekends and at his dad’s during the week. And with this change – for the first time since he was diagnosed with Leukemia in January 2012 – I’ve completed a full month of work with no sick days! And I’ve already managed to get the rest of the year plotted out for work – I’m ahead on everything there.

Not surprisingly, my stress level has gone down over the last couple of weeks. David and I are carpooling, which has cut my commute time in half! I’m not doing the whole rigamarole on Sundays of dosing out five billion pills for the week ahead. Instead of trying to wrangle Jack AND time in the mornings and at night five days a week, it’s down to two. And the time Jack and I spend together on weekends is all quality since we don’t have to worry about work or school the next day. It’s pretty goddamned glorious!

It’s all bittersweet, though. I’ve never spent such short jags of time with my kid before. It’s really hard to let him go back to his dad’s on Sundays. I cried last week for the first time in a while because two days with him wasn’t enough. I miss him and I don’t know what to do with myself.

I expected my house to get cleaner with all of this extra time but so far that hasn’t quite been the case. (Although, I have to say, my dining room table has stayed less cluttered and I’ve actually had time to put the laundry away!) Instead I’ve been spending more quality time with my husband, resting, getting caught up on my shows, experimenting with mandalas and zentangling, and hanging out with friends more.

I’m mostly loving it. It doesn’t feel complete without Jack but I will have him back with me 80% of the time by the end of August and then I’m sure I’ll be dreaming of next summer. ‘Cause the grass is always greener, right?

I Totally Called That One

I was on top of things this morning. I pushed aside my anxiety (which I get on every blood draw day) and got Jack his breakfast, drew his blood for labs, and administered his morning medicine. He got to school only a bit late (and we had a good excuse anyway) and then I got his labs to the hospital by 9:15am. I felt pretty good about that!

After dropping off the labs, I got on the highway and headed to work. For the first time this week, there was NO traffic. I flew down the road and through the toll plaza. I dropped my dog off at daycare before 10am – that’s less than 45 minutes to get from Hayward to San Francisco. Hell yeah!

I rode that high for about 2 minutes and then…

Less than 30 minutes later Jack’s lab results came in. His WBC counts had dropped and his ANC came in at a measly 440 – definitely neutropenic and susceptible to infection. While at school.

It’s like I’m psychic!

Or maybe just used to the push and pull that is my life.

David left work to pull Jack out of school while I called Jack’s dad. Jack was supposed to go to his Half Moon Bay home this weekend but they are all sick over there so we decided it’d be best he stay put in San Leandro.

Our Case Manager called me to confirm that Jack is neutropenic and give me instructions for this week. It sounds like we’ll still go through with his procedure on Monday (Spinal Methotrexate followed by a Vincristine infusion) but until then he’ll be off of chemotherapy to encourage his system to recover.

I think this is the first break from chemo Jack has had since this whole thing started last January. I’m not sure what to say about that. It feels strange. I’ll take it, though. It’ll be nice not to have to rush Jack through dinner so that we get enough time between his evening meal and chemo. Maybe the weekend will actually feel like a weekend.

And maybe, just maybe, he’ll sleep in since he’s feeling a little under the weather…

It Wasn’t All Bad

Despite the hardships we endured in 2012, there were some significantly good things that happened, as well. I DO recognize that and am very thankful. As much as things sucked last year, we were lucky in so many ways and it’s something I think about every day.

  • We had made a goal to buy a house in 2012 and we HUSTLED and totally did it. In less than six months we viewed over 60 houses, made 6 offers, and then we moved in June. We love our house and are very happy there. Our neighbors are wonderful, our location is convenient, and Jack’s school is fantastic!
  • Jack’s treatments have gone incredibly smoothly. Aside from his initial hospitalization when diagnosed in January, he didn’t have to spend another night in the hospital! He had no infections, only one fever (that was benign), and tolerated all of the medications very well. He didn’t even have to take many of the medications other patients take to manage side effects. We’ve had some blips with pill taking and adjusting to going back to school, but I can’t imagine any of it going MORE smoothly than it did.
  • David and I have gone through a lot in our four years together and this year was the hardest yet, but our marriage is better than ever. We’ve grown together, leaned on one another, and become a stronger unit. Our marriage has kept me grounded even when it felt like the world was coming apart around me.
  • We were gainfully employed. This has meant a lot, especially when the economy has been total crap. David was hired on at a great company this year, which was a HUGE relief after the last few employers he had. My own employer has been incredibly gracious and flexible with my schedule this year, which prevented a lot of stress. The health insurance is no small thing, either! I remember walking into the admitting office at Kaiser back in January and the admitting nurse commented, “Wow! You have GREAT insurance coverage!” She was right – our plan has covered probably 99% of cancer treatment costs. I wake up every day and think about how lucky I am to have a good job with health benefits. We would be destitute otherwise.
  • Friends and family were absolutely wonderful. I was amazed at the outpouring of support we received upon Jack’s diagnosis. EVERYONE we knew – and many people we didn’t know – wanted to help. Whether it was meals, supplies, toys to keep Jack busy, cards, care packages…it all left me in awe. Many days we sat and marveled at the goodness of people. We are so loved and never felt alone.

I’m still hoping that 2013 brings many great things (and fewer bad things), but I know I’ll feel lucky enough with what I already have.

Just A Phase or Full On Mama’s Boy?

Yesterday I sat down and tried to write a post about Jack and what it’s been like since he’s turned six. I wrote a lot, actually, but it’s all very disjointed. I found it very difficult to describe Jack’s recent exploits without the cancer stuff. I honestly can’t say whether some things he does these days are just part of being six or caused by side effects of cancer and its treatment.

I decided to pare it down and just write about one that’s been troubling me lately. Perhaps I can get some insight from other parents with kids around this age as to whether this is a ‘being six’ thing or a ‘kid with cancer’ thing. And if y’all have ideas on how to handle it, I’m all ears!

Jack is seemingly obsessed with me doing things for him.

Whether it’s making his meals, deciding on an outfit for the day, or playing Scooby Doo with him…he wants me, and only me, to do it. In addition, he demands that I LOOK!LOOK!LOOK! at particular scenes of shows we’ve seen a bunch of times. I have to acknowledge every robot he makes in his iPad game and every time he feeds one of his monsters in his other games…

At first I thought we just needed to spend more time together. He’s been at his dad’s more this year, so perhaps he was just missing me? But I’ve taken fairly large chunks of time off lately to be with him and that has not seemed to lesson his need one bit.

I asked him why he needs me to do things for him. Why can’t David fix dinner? Why can’t someone else read even one of the three books we read at bedtime each night? Why me and only me and all the time ME?

“Well, mom, it’s just that I’m attracted to you.”

Um, okay. I told him he should probably use different words, but alright. I guess he has a need he can’t explain, either.

I’ve thrown around various theories from him needing extra comfort since he got sick or because of the move or maybe it’s a phase…but it has been going on for months and months and hasn’t let up. It’s nice to feel wanted and, gosh, he must think I’m pretty great, but I would really prefer it if he’d led David take care of him, too.

I miss my fearless, secure, independent little dude. I hope he comes back.

Lessons Learned From Government Cheese

I grew up poor. For much of my early childhood we were at poverty level. My parents split when I was four, so my mother – age 22 at the time – was left with three young kids and a mortgage on a house she had borrowed money to get in the first place. She hadn’t graduated high school – instead she took the California high school equivalency exam – so she worked at a gas station where, on two separate occasions, she was robbed at gunpoint. After the second time she went to find a filing job with the county court system, where she eventually (when I was a teen) worked her way up to middle class wages.

Our family relied on my maternal grandmother for support, in spite of the fact that she was on disability and was only making it thanks to a man who couldn’t say no. My grandmother took this man for everything he had in order to care for us – his car, his money, his house. If it wasn’t for this man who was used, abused, and driven into bankruptcy, there is no way our family would have survived.

My grandmother was always very focused on money. She herself was born in Oklahoma at the tail end of the Great Depression; I can only guess her parents passed on their experiences from that time to her. My grandmother carried the idea that women didn’t get ahead by working – they had to use their bodies. In her mind, all actresses slept their way to the top. And she often said that she “should have married a rich old man” so that he’d die and leave her his money. One of my clearest memories is when I told my grandma I wanted to be an artist and she said, “Artists don’t make any money until after they’re dead.”

Pursuing a career in something you liked to do was a luxury that my family didn’t even acknowledge as being a possibility – unless, of course, it was obtained in some disreputable manner.

At my grandma’s co-opted house, floor to ceiling cabinets held more canned goods than we could eat. There were two refrigerators and a deep freezer. An extra pantry was added to the hallway and I remember gazing up at the shelves full of cereal boxes each morning. There were at least twenty boxes in there at a time – more than enough to feed three children under the age of five.

Our dinners came in tiny portions, of which included over-cooked meat (we couldn’t afford food poisoning!) and things from a can. I was a teenager before I learned that canned soup should have water or milk added to it; somewhere along the way my grandma must have internalized conservation of those precious liquids. On more than one occasion we used powdered milk with our cereal (which is more like milky water), and I never had a fresh vegetable unless I went to a friend’s house for dinner. My friend’s parents marveled at how much I ate when I visited – I was tiny, after all, and didn’t hit 100 lbs until I was a teen.

Some of our food came from public assistance. My family stood in line at a local church once a month for “government cheese,” a gigantic block of bright orange American cheese, along with a few other staples through a program subsidized by the government. I had subsidized lunches at school and the only baked things we got were the “end of life” goods on clearance at the Hostess bakery.

American cheese loaf

Even with all of this, I knew I had it pretty good – better than many (especially those kids in the Sally Struthers commercials). I had a house, even if I shared a room. I had clothes, even if they were bought on credit cards and my cheap shoes melted on the blacktop at school in the Sacramento heat. We had television (a second-hand working one on top of a dead one, naturally) and eventually we were able to get things like Nintendo, even if we weren’t early adopters. I’ve never been to Disneyland, but we had plenty of fun at our local Fairytale Town.

I focus on money a lot as an adult, in no small part due to my upbringing. The only money-related thing I’ve inherited is worry over finances. It eats me up when I owe money – financial stress takes me right back to my childhood and that desperate feeling of having to rely on others to get by.

I often have to remind myself that I have a great job, a two-income household, and a beautiful (yet affordable – for this area) home. I can pay my bills, even if it will take me longer than I’d like and I’ll have to pay interest. I can cancel cable if I need to, or offload a bunch of unnecessary stuff that I’ve got lying around. If I need money, I can easily get it. In fact, if it comes down to it – I know exactly what to do to survive on a tiny fraction of what I am surviving on now.

Still, that feeling of being right on the edge of disaster is ever near and less than comfortable. I can’t shake the lessons I learned from growing up poor.

Explaining Life As A Cancer Mom

I mostly handle Jack’s cancer pretty well. The day-to-day stuff is much easier than I ever thought it would be and I’m pretty good at keeping up with what needs to be done. The thing that does get to me, though, is the look on other people’s faces when I tell them details about Jack’s treatments.

I recently took a leave of absence from work. I needed it badly – my work was suffering – and I knew we were coming up on a difficult phase in Jack’s treatment, a phase where not only were the treatments much more frequent, but also given at home by us. I knew that if I didn’t take time away I was surely going to break.

Being able to focus on my family was wonderful. I got to spend time with my son without having to say, “No, honey, I can’t play right now because I need to work.” You can imagine the impact of this on Jack, as when I told him I was taking off work to be with him for a couple of weeks, he said, “That is the best news ever!” We had so much time to play, to talk, to run errands together, to just BE.

After those couple of weeks were over, I went back to work calm and pretty clear-headed. Within that first day, though, I started struggling again.

My co-workers are very compassionate and caring. Wonderful people! So upon my return, many stopped by my desk to check in on me. Each visit serves as a reminder of that ball of anxiety I try to pack away for a while. Every question asked takes me back to that first week that Jack was in the hospital, when we first learned he has cancer. Every reaction to my answers reminds me of how horrifying this all is. I feel all the emotions that I felt when we received Jack’s diagnosis all over again as I see the reactions of other people – shock, horror, fear, worry, pity. It doesn’t matter how far we’ve come since that hospital trip – it’s all fresh again in someone else’s eyes.

People are understandably curious about what we are living with day-to-day. How has our life changed? How are we coping? How long do we have to do this?

Unfortunately they are not prepared for the answers. We access a line directly into our son’s blood stream daily – there is no room for error with that. We have to be prepared at any moment for a meltdown over something as simple as inquiring if Jack has brushed his teeth that day – anything can set him off if he’s feeling cloudy-brained or achy or unsteady or just a little off. It’s a balancing act to enforce rules (because we still have to parent him) and letting him be (because he’s going through so much already). Even in the moments where we know it’s essential to enforce some sort of discipline, it can feel like we’re torturing the kid – kicking him while he’s down.

And how long will we have to do this? Well, the “simple” answer is two and a half years. That’s if everything stays on schedule – that timeline doesn’t account for delays or remissions (which hopefully won’t happen!). But cancer is not exactly predictable.

It’s hard to believe, I know. Two and a half years of treatment?! But isn’t the cancer gone?!

The cancer has to be prevented from coming back. Not only that, but Jack’s immune system has to be reprogrammed. And, yes, that’s two and a half years of chemo. Two and a half years of having a catheter in his chest. Two and a half years of mental space devoted to cancer…of watching for side effects and weighing every decision we make against what might be going on with Jack’s immune system.

Is this different than what any other parent has to go through? Yes and no. I think we all start off with a large amount of worry for our children upon their birth. Over time, though, most parents are lulled into a sense of security. We see how resilient kids are and how they aren’t so easily breakable. We wake up every morning with an idea that things will likely be okay, just as they have been for months or years. Much of parenting is learning that you can screw up and things will still be okay!

But once something has interrupted that – once something has stomped on that sense of security – it’s hard to get it back. A life-threatening condition plays into just about every insecurity there is about being a parent, especially the worry that even if we do everything right or well or directly to prevent bad things from happening, bad things can still happen.

This is not the type of message I am happy to be spreading to other parents, but this is my life now as a cancer mom.

Still Swimming

Things are in motion and going pretty well. Our packing is coming along nicely, we bought a sofa and loveseat to be delivered on the day we move into the new house, and we’re  in the midst of moving all of our utility accounts over. That will all likely be finished this week.

Jack is hanging in there. He’s got some aches and pains but if you didn’t know him, you’d probably be surprised to hear that he is fighting cancer. I notice his thinner frame and knobbier knees, his dry skin, the shadows under his eyes, the shorter temper…but I’m his mom. I can’t help myself from tracking cancer symptoms, possible side effects, making note of his weight loss at the clinic…

But I’ve worn myself out and it’s becoming obvious to others. Aside from a recent incident where I forgot to include one of Jack’s medications in the bag that I gave to his dad when we had our exchange, I also – for the first time ever – started driving the car without having buckled Jack into his booster seat! We didn’t make it too far down the road before Jack panicked over his freedom in the backseat and I pulled over. Ugh, I hate that I’m letting things slip like that. My memory is even more useless than it was before any of this started. David is getting sick of me asking the same question over and over again…and I hardly know what day it is at any given time (although Monday still manages to slap me in the face – you just can’t forget it’s Monday…).

Clearly it’s time for that LOA. Nine days until that starts!

I’m thankful we have five months of Jack’s treatments behind us. There is so much less fear in me now. There is a lot less worry than there was in the beginning. I’m seeing that Jack is doing incredibly well under the circumstances, and that is reassuring!

The decreased levels of fear and constant worry have made room for chronic fatigue and depression. I don’t want to get out of bed in the morning. I don’t want to go to work. Going out of the house for something as simple as looking at a few couches takes all of my energy. I’ve suddenly turned into an introvert; having a conversation with someone outside of my immediate family or super close friends wipes me out. I suppose that’s because I feel so braindead that anytime someone asks me a question, I have an urge to reply, “My kid has cancer.” Total buzz kill, ya know.

At least we are getting our house. I’m looking forward to that. It’s one thing to hibernate, but to do it in a place you love makes it a lot better!

Where I’m Complainy

Jack is being a total pill lately. I’m not sure if he has been saving it all up for when things with his cancer treatment weren’t so intense or what but it sucks! Sometimes it’s a matter of snapping at us or demanding that we not say certain things (tonight it was “googly eyes”). Other times he won’t pick up after himself and defaults to “my legs hurt.” It makes it difficult to tell when he is really not feeling well and when he is just trying to get out of something!

This is weird territory for us. I know many of the medical professionals we’ve seen have mentioned to me that discipline should still be in Jack’s life but, oy. Who has energy for discipline on top of all the cancer stuff? And how do I even tell if he’s just being a little jerk or really not feeling well? One minute he’ll dash into his room and the next he is crawling on his knees to the bathroom.

Lord knows I’m not at my best, either. Fatigue has more than caught up with me, it seems. I’ve taken more than my fair share of naps lately. Hopefully I will ‘catch up’ soon.

I have one more complaint before closing out this sorry post. :P It’s become much harder to share the CaringBridge site with Jack’s dad. Aside from it seeming that he has more and more been using the site as his personal blog instead of Jack’s, having that much insight into what goes on when Jack’s at his house is driving me bonkers. I worry constantly that Jack does too much over there and Jack’s recent attitude problems haven’t helped relieve that fear…especially since Jack has been spending more time there since he’s not in school and David is back at work. I have to keep reminding myself that I can’t entirely protect Jack from his dad’s shenanigans – I can only teach him how to speak up for himself – and becoming a stay-at-home mom is not the answer (although it sounds more appealing on the days when Jack isn’t being a jerk to me…).

Alright, there is my bitch session. Time to put the kiddo to bed!

Stream of (barely) Consciousness

House craziness aside (because, let’s face it, it IS crazy that we are trying to buy a house right now) I’m super behind. I came home tonight determined to do laundry…but I haven’t started yet. I DID put some things in the laundry basket – including some items that we brought home from the hospital over a month ago. Like I said…behind. I won’t tell you about the sheets on our bed…

It’s not completely my fault. I mean, there’s the cancer to blame. And also the fact that our washing machine isn’t working properly. I could call our landlord, probably, but who has time for THAT? Also, have you MET our landlord? He’s as hands off as they come. The roof on our shed out back caved in long ago and we’re too afraid to go out there because of the mold, anyway. Oh and let’s not forget the (poorly patched [sorry, honey!]) hole in the ceiling of our kitchen nook…that must have happened 2 years ago now.

But I can’t just wait around, avoiding laundry until we move into our new house (right?). That’s at least a month away (if we get the house – right now I’m tearing through loads of paperwork looking for David’s tax return from 3 years ago…). I’ve been through all of my back-up clothing and Jack’s moved on from pants to shorts. I need to get my ass in gear. I need to use that washing machine regardless of the fact that the spin cycle doesn’t work!

Instead I am sitting here drinking a glass of wine and writing…

Wanna hear something weird? (No? Oh well!) David had pretty much stopped looking for work to focus on Jack and school. And then a recruiter found him and he had his third interview today. AND then we heard that Joe has an interview this week – after a year of unemployment. So now we’re in a weird position. We were looking at dual unemployment as somewhat of a blessing because no one had to take family leave and miss out on half their income. And, really, this should have been a fine plan because the economy still sucks and there haven’t been job bites in ages. But then jobs just popped up out of nowhere!

When will this feeling of living in backward land go away? What alternate reality am I in that my son has cancer, we’re able to buy a HOUSE in the Bay Area on one income, and jobs fall out of the sky?

I’m pretty sure we’re going to see a zombie apocalypse soon.

If not, I’m just gonna put it out there – I could really use a new washing machine.

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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