Summer Tastes Like Freedom

dance-32193_640School’s out for the summer! YEAH!

This is big for us. Probably bigger (and better) than it is for most households. See, during the school year, Jack spends weekdays at our house and then all but one weekend a month with his dad (who lives an hour away). In the summer the schedule flips, so we will actually get to enjoy weekends and have leisure time with Jack on a regular basis! We’ll get to have play dates with his friends, too.

Not to mention that for the next two months our household will have a break from:

  • Homework
  • Packing lunches (with foods Jack hasn’t gotten sick of)
  • Strict bedtimes
  • Dragging Jack out of bed for school
  • Worrying about Jack going to bed on time
  • Being late or calling into work due to Jack feeling ill
  • The small annoyance of Jack’s teacher spelling his last name wrong regularly (it drives me NUTS)

David and I will definitely be enjoying the quiet time on weekdays, too. With our baby due at the end of August, this is going to be the last couple of months where we get to have stretches of time alone together without any kids to take care of. We will enjoy that little perk of shared custody while we can!

We have an exciting summer ahead of us for other reasons, as well. Jack’s 8th birthday is July 13. His Make-a-Wish is underway and he should have a completed TARDIS console in his room by the end of summer. In early August Jack is scheduled to go to Camp Okizu’s oncology summer camp where he’ll be away from his parents for a whole week – EEP. We are nervous about it and we’re not sure he’ll actually stay the whole week, but we figure we’ll give it a try. We think it will be good for him to get a little independence.

August will bring our baby and a new school year – Jack will start the 3rd grade. And then things will get messy (messier) again.

So for now, I’m going to try to enjoy a little bit of freedom!

Too Many Things

Yesterday involved a lot of things. Too many things, which ended up overwhelming me.

These things included:

  • Cleaning up the bloody nose Jack had when he awoke. And then worrying if this was a sign of low platelets (it wasn’t).
  • Drawing blood to determine ANC (not related to the bloody nose) and running the vials to the lab.
  • Getting Jack out the door on time to make it to school (put your shoes on, take your meds, brush your teeth, do you need a jacket, don’t forget your backpack). It was dicey for a bit because he couldn’t put two words together and walked around like a drunk man.
  • Calling the vet to make an appointment for my cat who has a skin issue that just won’t go away, likely due to a thyroid problem.
  • Trying to remove the nail polish from Halloween and being left with blue-stained nails.
  • Calling the Department of Child Support Services to determine the status of my account, which has seen no activity since July. Apparently the DCSS has requested that the DMV suspend Jack’s dad’s driver’s license.
  • Notifying Jack’s dad and step-mom about the license suspension. In case they missed the memo. And worrying about the (almost for certain) blow-back that will likely occur.
  • Worrying about leaving the country (and Jack) in a couple of weeks.
  • Calling and leaving a message for Jack’s oncology case manager to ask about the results of the labs, which showed that the acidosis had gotten WORSE despite the changes in medication that happened two weeks ago. The case manager was not working today.
  • Contacting Jack’s pediatrician in an attempt to understand why Jack’s acidosis has gotten worse instead of better and find out next steps. Apparently the next step may be consulting with a nephrologist.
  • Letting the home tutor know we might not need him but, hey, it’s early in the week so ask us again in a day or two because Jack hasn’t made it to school more than two days in any given week over the last three months.
  • My day job, but from home.
  • Setting out the rest of Jack’s pills for the week and, then, ordering more.

That was all capped off by a full blown anxiety attack. ‘Cause this was all too much for one person to handle on any day and there will just be more tomorrow.

Hasta Luego

In less than three weeks, David and I are taking Jack to school, boarding our dog, and jumping onto a plane headed for Madrid, Spain.

No, we can’t afford it. It will increase the already sizable amount of credit card debt we carry. But we are going anyway.

Jack will spend Thanksgiving week with his dad (who gets holidays on odd years) and my employer has issued an office-wide mandatory vacation for that week. So I have a week where I can’t work if I wanted to and I won’t have my kid. A whole week!

And lord knows we need a vacation! David and I haven’t had a true vacation together since our honeymoon three years ago. We are lucky if we get to spend an hour together each night, and usually that time is spent talking about Jack’s health. We are tired and depressed and even though we see each other daily, we miss one another.

So yeah, we’re leaving the country and getting as far away from our day-to-day troubles as we can. We are going to dedicate that week to taking care of ourselves and renewing our relationship. It’s all about us! We can wake up when we want to and go wherever our mood dictates.

I am excited and so very hopeful. I hope that the radical change in location will help us set aside our daily stresses and replace it with awe over a different country and culture. I hope we can stop talking about Jack’s health for a while and instead talk more about how fortunate we are to have this wonderful family. I hope we can reconnect and enjoy our love. Maybe we can even plan for the future.

Mostly, I hope we will come back feeling refreshed and energized and better able to handle the challenges that come at us constantly.Jack has a year and a half of treatment left. Hopefully this break will fortify us enough to make it through.

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Hey, look! I’m participating in NaBloPoMo! You can, too!

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.

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This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

When Self-Care Comes In Second

Jack is back to school! It’s his second week, in fact. And it’s his fifth day making it to class. Yesterday was picture day and he was told by the photographer that he looked like Harry Potter, which made him very happy.

Antibiotics are done and chemo has restarted. As of Sunday Jack’s ANC was an outstanding 1296! All very good things. Whew, we can breathe again.

Life is back to what is ‘normal’ for us, which means it’s catch up time.

Now that things are moving again and we’ve returned to our regularly scheduled life, fatigue and stress are hitting me hard. I can function like nobody’s business when in the middle of a crisis but as soon as it’s contained, I need to sleep for a month! I wish it wasn’t this way – I wish I had been able to rest more while we sat in the hospital room doing a bunch of nothing. But when I napped, I had nightmares.

So ever since we came home from the hospital, I’ve been caught between needing very badly to get some rest and downtime, and stressing out about that rest getting in the way of catching up on all the things I couldn’t do during that week in the hospital. Mostly that’s a lot of paperwork, bill paying, laundry, and house cleaning. Oh and my job. But there is a big chunk of it that is taking care of myself and also getting time with my husband, things that always seem to get pushed behind everything else.

I’m tired, I’m overwhelmed, and I’m in desperate need of both time alone and time with my husband. And I’m depressed because I can’t see any way around this pile of ickiness.  I just have to go through it.

Family leave should include two parts – the part where you take care of your family, and then the part where you recover from taking care of your family. Where’s the downtime for the caregiver?

I know it’s only a matter of time before I feel like things are okay again. I’ll be able to look on the bright side more readily and I will feel less irritated by things that aren’t going smoothly. Maybe I’ll even be able to blog properly.

Of course, if you hear I’ve run off without a word to anyone, it’s likely I’ve found a very deep hole to hibernate in until the storm in my head has passed. I’ll come out in my own time.

Maybe.

On The Mend

Today is my first day back at work after two and a half weeks of being off to care for Jack. I’m not gonna lie – it’s hard to come back to work. It’s hard not to have the option to nap some time during the day. But it’s also nice to be doing something that has nothing to do with my son’s health.

I am really glad the last two and a half weeks are behind us! A mystery illness causing febrile neutropenia, a hospital stay, tests galore, so many medications on a very rigid schedule…and so much boredom. There are only so many movies to watch and so many crafts to work on. We’ve watched Seasons 5-7 of Dr. Who several times over and Jack has either drawn or built several incarnations of the TARDIS.

Jack’s ANC recovered on Friday, so he was able to get off of the antibiotic he’d been on for two weeks, but then he was diagnosed with a bacterial infection called c. diff. It’s something that attacks a lot of patients who’ve been on antibiotics for a long time because antibiotics strip the good bacteria from the gut. So Jack started a new medication for that, in addition to restarting his chemo. Thankfully the new medication is not one that has to be given on a strict schedule so I am no longer getting up at 5 and 6 am. Yay!

And tomorrow Jack gets to start school! WOOHOO!

I’m excited for this school year. He’s starting relatively on time (this week will be the first homework week, so he hasn’t misses much) and his best friend is in his class this year. I met and spoke with his teacher last week and she is really great! We’re all more accustomed to the school/work/medications routine than we were when he started 1st grade, as well, so I think it will be a smoother year. I hope.

Now that Jack’s ANC is back up, he’s back on maintenance levels of chemo, and he seems totally fine, I’m feeling much less worried about him. I’m so thankful he’s on the mend and things are getting back to normal!

Summer Hibernation

I’m working on stress relief this summer. So far it’s going well. I’m taking a multi-pronged approach and I’m already feeling much more like my old self.

I like to call this my “summer hibernation.”

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Firstly, inspired by Jack’s love of drawing, I’ve picked up the meditative art of zentangle. It’s super easy to start and you don’t have to be ANY good at drawing – it’s all dots and lines. In fact, I have the hand tremor of an arthritic old crone and I’m still able to do this:

Zentangling helps quiet my mind when my thoughts are racing and I’m feeling anxious. And it gets me off of my iPhone when Jack wants me to sit with him while he draws. The repetitive motions are soothing to me and unlike the glare of a laptop or smartphone, paper and pen don’t glow and overstimulate me or bother my eyes.

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I’m catching up on television shows that everyone else has already seen – we just finished season 2 of Homeland and are about to start Shameless from the beginning. In between that we’ve been catching some comedy through Amazon Prime (Zach Galifianakas and Bill Burr). Jack recently introduced me to Dr. Who so I’ve been checking that out (we started off with the 11th doctor and he is my favorite right now!).

We’ve gone to the movies quite a bit. We’ve taken Jack to see Monsters University, Epic, and Despicable Me 2 (Monsters U was the best of those, IMO). David and I went and saw World War Z, as well, although I wouldn’t call that relaxing in the least. We came out of that theater feeling like we need to build a bunker ASAP!

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We attended High Sierra Music Festival over the Independence Day weekend. That involved camping, swimming, eating, and seeing a crapload of musicians perform LIVE – including the very epic Robert Plant! My new favorite performer is Sarah Jarosz (we got to watch her perform with just her guitar in an “MTV Unplugged” type performance at a late night session). This song is breathtaking live:

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I bought a Groupon for my husband and me to receive three massages each. We’ve both gone once so far and it was definitely the right choice! Two more sessions should help oust what’s left of last year’s balled up tension.

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I’m being conservative with social plans, too. Usually when Jack goes to his dad’s (during the school year it’s on weekends, during summer he goes on weekdays) I tend to get all the ‘fun’ in but I’m slowing down and taking it easy. I’m allowing myself to be a bit anti-social so that I can recharge before the summer break ends. I love people so much, but they tend to wear me out. (It might surprise some of you to know that I’m on the introverted side.)

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Other than that, it’s certainly helped my stress level that I’ve been able to focus on getting caught up (and ahead!) at work during the week since Jack is with his dad. Our debts are finally getting under control a year after we bought our house, which also takes a huge load off! Maybe soon we’ll even be able to decorate the place.

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School starts in a little over a month. Until then I think I’ll keep hanging out in my cave.

What are you up to this summer?

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?

Crystal vs. Ice

I’ve been dealing with a nasty Vitamin D deficiency that has made me fairly useless. The major symptom I’m having is fatigue. I nap a LOT and simple things wear me out. It’s quite annoying. I’m on supplements now so hopefully I’ll get it all under control soon!

In the mean time, I’m spacey and an accident on Monday did me no favors in rectifying that. I’ve lived in California my whole life, mostly in the central valley where it has snowed maybe once in my life (and it didn’t stick). It did get frosty there and I remember warnings about black ice on the freeways, but I lived in a very flat area that saw little water due to drought and the fact that our sprinklers were totally broken anyway. So, while we had frost on our windshields, I never dealt with an icy walkway!

Now I live on a hill. Not only is there about a 30 degree upward slope from the sidewalk in front of our house to the back of our property, but the street slopes perpendicular to our property slope, as seen here (note: that is the previous owners’ RV. My car was parked in that spot.):

photo copyright google

Well, on Monday I was in a hurry to get to work so I stepped out of the house, not paying any attention to the ground beneath me, and headed to my car. Halfway down the walkway (see left-most yellow star), I slipped on a layer of ice and fell, skinning my knee and ripping my (favorite!) pants. I sat there for a few seconds to determine if the ankle twisted beneath me was broken (it wasn’t) and I went back inside to change out of my ruined pants before trying again.

I didn’t fair much better in Act 2. This time I decided to walk through the grass toward the driveway and avoid that patch of ice on the walkway! BUT…I got to the driveway and made it a few steps before my feet left the earth and I fell flat on my ass! The poor dog slid down the driveway, his legs and paws scrambling to find some traction, looking a lot like Bambi on ice. I grabbed his leash and hauled him up to me and got him in the car so he couldn’t go skating further away. He looked thoroughly confused!

Then, because I’m an absolute MORON, I figured I’d go pick up the water bottle I had dropped the FIRST time I fell. It had rolled down the gutter to the front our neighbor’s house. I tried to walk down the driveway behind my car, ever so gingerly, and that would be when I fell for the third time – this time hitting my right temple on the icy concrete.

WHY I thought I could walk on ice, I don’t know. I cannot explain my thought process at all! But I got into my car after that third fall and sat there, dazed, wondering what the hell I was supposed to do and whether I could even drive. I had fallen three times, but I was too cold to know if I’d hurt anything other than my rapidly swelling finger and throbbing head. I really needed to get to work (we had a big event that I was supposed to be there for), but I had just hit my head on concrete! Plus, my pants were a bit wet. I sat there contemplating and staring at my steering wheel.

The garage door opened then, as it was time for David to take Jack to school. He and Jack looked over at me curiously, then walked over to ask what was going on. I told him the whole story, explained my dilemma, and I don’t really remember what happened then but I went back inside to call the doctor and MomGyver a make-shift splint for my finger.

I also happened to check the weather report and found out there was a ‘hard frost advisory’ in effect for the area. Very helpful. :P

So later that day David drove me into the Minor Injury Clinic at Kaiser and I got an x-ray of my finger and a CT scan of my head. Thankfully (and kind of miraculously!), I had no broken bones and no bleeding in my brain. They splinted up my sprained finger, told me to stay home two days to recover from my mild concussion, and sent me on my way.

So that is my story of utter ridiculousness on a Monday morning and how I got my second concussion in the span of about a year. I’m going to have to start wearing a helmet when I leave the house. Please forgive me if I don’t finish sentences over the next few weeks, as I’m concussed!

By the way, if anyone knows where our sprinkler system timer is located, I’d be mighty grateful for the information!

Juggling Schedules With Two Working Parents

Aside from our current issues with cancer and medications and such (which I’m sick to death of talking about), we’ve had a very challenging time with getting into a routine for taking Jack to school and commuting to work. I’ve spent a lot of time (while sitting in traffic) wondering how in the world other two-earner households manage it, particularly when living in a big metropolitan area.

Currently, I have some flexibility on my work hours but in general I work 9-5. David works 9-6 and his hours are NOT flexible.

Our plan was to have David take Jack to school in the mornings (school starts at 8:10) and get to work by 9. Jack attends an after-school program that is open until 6:15, so I had planned to work 8:30-4:30 so that I could pick him up in plenty of time before the end of the after school program.

Unfortunately, traffic here has completely exploded lately. Our commutes, which used to take about 45 minutes each way, have expanded. Today it took me TWO HOURS to get into the office. When combined with delays in getting out of the house due to medication administration issues, mornings have been filled with stress. We’ve both been late to work several times now. I left work at 4:30 yesterday and got to Jack’s school at 6; he was the last kid left waiting to be picked up. And then that leaves us with two hours to get home, get Jack’s dinner prepared and eaten, administer his medications (two of which have to be taken an hour after dinner), get him bathed (if there’s time), and get him to bed.

We’ve been failing at bedtime, that’s for sure. We’re lucky if he’s asleep by 9:30.

How in the world do others in this area make their schedules work with their kids? Surely not every household has a stay-at-home-parent or family member! Do the rest of them have nannies? Not that we could afford that… And I wish part time work was an option! We can’t afford that, either, even if I could find an employer to pay me the hourly rate I’m getting now for being there only half the time.

It’s all kind of ironic because I’m an executive assistant by trade. I manage schedules and make impossible meetings happen all the time! I can’t seem to do it for my family, though. I can’t think of a solution.