I’ll Never Get Used To It

“Okay. Yep. Sounds good. Thanks.”

It all seemed so casual, so matter-of-fact.

• Discharge from the rehab facility on Wednesday
• More Speech Therapy, Occupational Therapy, & Physical Therapy evaluations at another out-patient rehab place on Friday
• More full spine & brain MRIs on Monday
• Another lumbar puncture & appointment with oncologist to go over all of the results on Tuesday
• Admit to Children’s Hospital for the next round of chemo on Wednesday

It took all of about a minute from the time I set down the phone until the tears started welling up. I tried to blink them back. I wondered why I was crying again…

Shouldn’t I be used to all of this by now?

Can a mother ever get used to this?

The roller coaster analogy works for a reason. The ups & downs, the sudden turns, the lack of control, the feeling of being tossed to-and-fro, barely staying on track…

Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.
Trust ye in the LORD for ever: for in the LORD JEHOVAH is everlasting strength:
Isaiah 26:3-4 KJV

We had been focused on Ian’s pain, focused on getting him through that intense time, for weeks. Then our focus shifted to all of his rehab while he was spending 2 weeks in-patient at the Sister Kenny Rehabilitation Institute for more intensive therapy. And then it was time to schedule more tests and see about the next round of chemo.

Oh, yeah, my son has cancer…

I had spent weeks thinking about and researching severe peripheral neuropathy. I had been reading up on drugs like Ketamine for pain. I had been wondering how on earth we were going to fit in all of the therapy appointments once Ian came back home. I had been busy, I always am, busy thinking about so many things, but not so much about cancer, not so much about chemotherapy.

Denial? Defense mechanism? Avoidance? Air-headedness?

Probably all of the above…

My feelings about chemo aside, because of some unexpected test results, we were thinking Ian would not even be able to receive any further chemo. I think I had mentally closed the door to chemo. Repeated test results showed changes, and while it’s still rather complicated and not completely understood, it now looks as though he doesn’t have the underlying chromosomal problem that they thought he might have. This is incredibly good news, as that problem is pretty much fatal (it was a very heavy few weeks, which, in part, explains much of the bloggy quietness), but the flip-side of this good news is that we are back to considering a chemo plan for Ian.

Everyone agrees that he cannot receive the typical maintenance chemotherapy plan for Medulloblastoma. He will not get any more Vincristine, and we’re not exactly comfortable with Cisplatin, either, at least not any time soon.

We are all also pretty much in agreement that whatever further treatment he does get will be with one agent at a time, rather than the typical cocktail of chemotherapy drugs typically thrown at patients with this cancer. If Ian has any further serious side effects, we want to be darn-tootin’ sure that we know what caused it, so we know what NOT to ever give him again.

I told IT Guy that we need to think of something pretty awesome to do on Saturday, as we have this tiny blink-of-an-eye window-of-opportunity to do something, anything, before next week. (Any ideas?)

“I already hate next week.”

I said it. Out loud. It was only Monday of this week, and there I was, crying about the next one. I said it, and then I dabbed away more tears. They just kept flowing.

They flow. They stop. They dry. They start again, and I’m not even menopausal, or PMS-ing.

It’s the roller coaster…

*******

Random Bits:

• Our van is in the shop, having its transmission rebuilt. Ugh. It was that or a new van, and while rebuilding transmissions costs a lot, buying a 12 (or 15) passenger van costs much more…
• We had snow on New Year’s Eve. It’s pretty much gone. Weather.com says high of 47 today. Yes, we still live in Minnesota. I have seen the forecast, and some bitter cold air is on its way, or so they say…
• I’ve been knitting away again, even fiddling around with getting some more patterns published…
• Baby Faith slept for a 5 1/2 hr stretch last night! Yes, she’s 9 months old. No, she doesn’t sleep through the night yet. Yes, I’m always tired.
• I’m praying for a new piano. Ours is beyond repair, at least beyond any affordable repair. I sincerely miss playing the piano, and hearing my children play the piano.
• I’ve learned to embrace the play-dough, despite the carpeted dining room. Life is too short to worry about play-dough smushed into the carpet. Besides, it’s old, and I’ve never liked the color anyway…
• A few short weeks after the warranty expired, my laptop died, after my sweet innocent-looking 9 moth old smacked her chubby little hands on the keyboard. It was probably a coincidence. Maybe. The agents at The Geek Squad did everything they could, but it was just too far gone…

Related posts:

1. Indiana, Here We Come!
2. It Was a Different Kind of Sunday
3. He Is Faithful
4. HUGE Sigh of Relief! Thank You, Lord!
5. 2 Months Since Brain Surgery

Tagged as: chemotherapy, Ian