Calgon, Take Me Away

I finally downloaded WordPress onto my phone. I’m much better at using my phone while nursing than a laptop. I lack coordination. Hopefully this will lead to more blogging.

It’s been a rough couple of weeks. Jack was hospitalized with a blood infection. The baby and I got sick. And then I got a case of mastitis.

Jack is out of the hospital and doing fine, but he’s been on a rigorous antibiotic regimen that involves mixing medication and running an IV several times a day. The worse one is the dose in the middle of the night, but the afternoon dose hasn’t been a picnic, either – usually I’m mixing the IV drugs while using my foot to bounce Dez in the bouncer. I’d run away to join the circus but I’m already there!

This case of mastitis is a bitch. After several days of trying to unclear a plugged duct in my armpit and dealing with horrid shakes and chills and dizzy spells, I called and got some antibiotics. Unfortunately Dez was not tolerating them well at all! So I did what you’re totally not supposed to do – I quit taking them a few days in. Dez is doing much better but I’m not. I now have a mass in my right breast and it hurts like hell! I assume if I keep nursing non-stop on that side it will eventually work itself out (or the breast will fall off?). In the mean time, I want to stay in bed and cry and sleep.

But! Jack has follow-up appointments. And Dez needs shots. And I return to work in a few weeks so I need to find a daycare that takes infants.

Ain’t no rest for the weary…

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In Some Ways The Journey Has Just Begun

These last nine months we’ve been looking forward to Maintenance, the final phase of Jack’s treatment, doggedly barreling through the “intense” phases with the promise of less chemo, fewer clinic visits, the return to school…it sounded so much better! It sounded like relief!

Instead of feeling that sense of relief now that we’re there, the start of Maintenance is reinforcing the feeling that this is a never-ending process. This Maintenance milestone feels false, like the phase was given a nicer name so that we could trick ourselves into remaining hopeful about the future.

It reminds me of those first days in the hospital, when the doctors kept repeating that this was the “good cancer” and telling us over and over about the success rates of childhood leukemia treatment. THIS is the cancer everyone wants if they could choose; this is the one that has the most funding and research! I wanted to believe them. In my naivete I thought that maybe this would all be dealt with in a matter of six months or so. I told myself that this was like a lot of other illnesses – that it sucks for a while and then it’d be gone and we wouldn’t think about it after a while. I felt like someone had punched me in the gut when it finally occurred to me to ask how long treatment would last. THREE YEARS, they said. Three years IF there are no delays, remissions, setbacks.

Uhhh…this is the ‘best cancer’? Whaaaa?

The mind trick worked for a bit. But reality is setting in. Maintenance still involves chemo – daily pills and monthly infusions, plus the daily line flushes and the weekly dressing changes. This routine lasts two years.

Jack can return to school – resume a semi-normal life – but then he’s subject to all kinds of germs. It’s actually MORE worrisome in that respect – infection is still the biggest culprit for deaths during remission in children with ALL. (I just looked that up. I’ve been ignoring those statistics these past nine months. Tip #1 for coping with cancer: DON’T GOOGLE IT. Close your eyes, plug your ears and sing to yourself LALALALALA I’m not listening!) Oh and we have to hope he doesn’t develop an interest in contact sports.

There’s not much anyone can do to lessen this burden on any of us. It’s not a financial thing, although we’re certainly feeling it there. It’s not a matter of donating time – our family and friends have been more than generous and helpful. It’s just something we have to accept – the fact that Jack is still in danger from the disease, the treatment used to cure it, and the people around him who might be carrying any number of illnesses. Nothing will take away that worry that a fever will bring.

We need relief. We need days where we can just by worry-free and ignorant of this ugliness. We need this next two years to be behind us instead of stretching out as far as our eyes can see. I desperately want to believe and trust that the treatment has been 100% successful, that we’ll come out of this stronger and more resilient and have no reason to grieve more than we already have.

I’m usually a “prepare for the worst, hope for the best” type of person. I just can’t prepare for anything other than Jack getting better. That doesn’t stop me from worrying, though.

Even after curing the disease, there will be more to watch and look for. Yearly checks for cancer – for life. We’ll be watching for long-term effects of treatment like heart damage, muscle weakness, learning disabilities, and the development of other cancers. While I’m sure with time I won’t fear every illness that comes around, I’ll probably always wonder if the cancer will come back.

The start of Maintenance marks the end of simply beating the disease and the beginning of living with the aftermath. We are out of crisis mode, but that means we have time to think and feel and react and process all that has happened this year. In some ways it’s the hardest part of all of this.

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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.

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Half-asleep mumblings

Poor Jack has a cold for the first time in a while.  He doesn’t have a fever but he is visibly exhausted, snotty, and quite hacky.  Last night he woke up twice bawling.  I *think* he hit his head when tossing and turning but it’s hard to say because he was pretty out of it (now I know what David deals with when I try to talk to him while half asleep).  After getting him to bed the second time, I had trouble falling back to sleep and kept thinking I heard him crying.  I’m tired today.

It astounds me that I dealt with regular night waking for almost two years straight when Jack was a baby while holding down a crazy-busy full time job and getting absolutely no down time.  How did I do that?  How does anyone do that?  After being so unused to it now, I feel like a complete zombie today.  It’s a miracle that I can type!

Thank goodness we’re in an easier phase overall!  It’s days like today that remind me why I haven’t had a second child yet.  The easier things get with Jack, the harder it gets to go in the second child direction…

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