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…

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.

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.

Sensory Screening

It’s hard to believe that summer is coming to an end, although the inclement weather in San Francisco this week has been providing plenty of warning. Jack’s first day of school is two and a half weeks away! I’m looking forward to it, but I’m also nervous about the impending struggles over homework and clothing and getting to school on time. Hopefully after a few months of a more relaxed schedule, we’ll have more energy and patience to tackle the school year.

In preparation for that, we were able to get Jack screened for sensory issues at a pediatric therapy center near to his dad’s house recently. The OT found several areas where Jack was having trouble, recommended further testing (to determine if this was ‘disorder’ territory) and said he would definitely benefit from occupational therapy. We’ll need to do more thorough testing to determine how much help he will need, but we also need to talk with his oncologists to figure out which areas are likely going to be a losing battle during chemotherapy. Some of the bigger issues the OT noticed were with muscle tone and Jack’s body awareness (proprioception). Those have never been strong areas for him, but they are also areas that chemotherapy can have an impact – sometimes permanently.

In looking up the information on sensory issues, I also found this information on inconsistent responses to sensory stimuli. I’ve noticed that Jack can react differently to stimulus based on the day – one day his socks bother him, and the next those socks are fine and something else is the issue. I knew some of these issues were always present with Jack – I distinctly remember setting him down in the grass as a tot which resulted in him freaking out and bursting into tears when he tried to crawl because he hated the feeling of the grass so much – and as time has gone by with us dealing with cancer treatment, I noticed that during certain times in his treatment cycles he had more trouble than at other times. This sentence from the above-linked article explains perfectly what I was already starting to suspect:

Also, the more outside stresses a child has in his life – the demands of school, illness, lack of sleep, tension at home, hormonal fluctuations of adolescence, changes in any medications – the harder it will be for him to “buck up” and tolerate his sensory issues as well.

I’m glad to have this information and to have some sort of explanation for the issues we’ve experienced, even if it isn’t exactly good news. This gives us a bit more understanding of how to address (and hopefully avoid) problems in the future. I’m not sure if we should have sought more help earlier in his life or not. In the past these sensitivities didn’t really interfere with our life. It’s hard to say whether we would have been able to keep on living with the sensitivities while only making minor adjustments, if he would have grown out of some of these issues, or if things would have gotten worse even without cancer in the picture. In any case, we can only act upon the information we have now, I suppose.

So I plan to follow up with the school district and push for testing and an IEP (rather than just the 504 plan we have in place currently). I hope we can get services through the district because I have serious doubts about our ability to find time for outside help until the cancer treatments are done (March 2015!). Of course, if that is the only option we will go that way. I’m just hoping for the (slightly) easier route. I think we are deserving of that!

Not surprisingly, this is all a lot easier to process when we’re not in the middle of trying to find various articles of clothing that are tolerable enough to get Jack out of the door and into the classroom. Thank goodness for summer break!

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 meds 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’s cancer 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.

Delayed Reactions

Jack’s out of the hospital. Thank goodness. Today he is at his first Cancer Clinic appointment getting an infusion of chemo. I’m looking forward to him coming home, and hope he isn’t too sick afterward.

I keep trying to tell myself the worst has past – that the prognosis is good, that so many cancer cells have already been zapped by the chemo, that the disease won’t progress. I know these things in my head. Still, my heart aches. I struggle to get out of bed in the morning, to eat, to do anything to take care of myself. When Jack isn’t here I don’t know what to do. What was life like before this diagnosis? What did I think about when cancer didn’t fill my every waking moment? What if Jack isn’t one of the 90% of kids cured?

I keep thinking about how all of this almost went undetected. I almost didn’t take Jack to the doctor. We almost didn’t opt for a blood test to “confirm” anemia. It would have been so easy to dismiss all of his symptoms as a combination of fighting off a cold and returning to school after a long break. It serves no purpose to think about these things but they are invading my mind nonetheless.

I am very much shell shocked. I got through the crisis period without completely freaking out, but I didn’t escape the freak-out – it’s just happening after the fact. My brain and body are not cooperating. I can’t think straight and I feel tired and/or sick to my stomach all the time. I started getting angry at the piles of boxes in our house – not that I don’t appreciate everyone’s thoughts and generosity but I just want to go BACK. I want to NOT need any of this stuff. I’d much rather have someone take this nightmare away. So when I look at the boxes and think about what they are for, I have this irrational anger…and then I get angry at myself. :P

I can keep myself busy some of the time. My friend Kurstan ventured out to Target with me this weekend and I bought storage for medical supplies and cleaning products. I came home and organized a bunch of the house, put away the laundry my friend Katie graciously washed while we were away, and started washing items we brought home from the hospital. I’m back to work this week, as well, but I’m having trouble focusing on the simplest of tasks. Maybe I need more coffee.

All of our friends and family (and even strangers!) are being so awesome and loving and kind to us. I really do appreciate it, despite this cloud over my head. I haven’t once felt alone since this all started – I feel a community of support behind our family. I just wish the occasion hadn’t arrived where we need this support…