Maintenance

I apologize for the long space between posts this time. The truth is, I’m tired of cancer- and I’m only the MOM! It makes me weary. I’m exhausted by the way it has wrecked life as we knew it, and I’m tired of being “strong.” I’m actually really tired of even talking about it. It’s interesting how six months ago I thought, maybe if I learn enough, and study enough, and experience enough with Jace, then someday it will be easier, and my knowledge will serve a purpose. Right now, I am longing for the day when the word cancer doesn’t control everything. Someone told me cancer is the disease of love, because everyone around the cancer patient is called on to serve so “lovingly.” Until JACE can call it the disease of love, I have real issues with that theory.

Despite my negative attitude, as of Monday at Primary Children’s Hospital, Jace is officially in the maintenance phase of his treatments. He received a LP and chemo in his port. Everything went fine, and although Jace has been weak and sick this week, we think he will continue to improve daily before his next treatment. Jace also received several prescriptions for daily oral meds. On different days of the week, Jace will take different combinations of medicines. Actually let me explain our treatment calendar for the next 2 ½ years.

To my best knowledge (I’ve been known to be wrong) this is what Jace is looking forward to:

*Once a month chemo treatments (Vincristine) in his port. *Once every 3 months hospital visits with anesthesia and LP. *Five days monthly steroid treatments. *Daily oral meds ranging from 3 pills on certain days up to 12 or 13, and *continued caution with sickness, fevers, and exposure to illness.

As I said, this will continue for 2 ½ more years. Jace is 7 years old now. This will continue until he’s 10. But don’t worry, they’ve told us. IF the cancer COMES BACK, it should manifest again within 6 months of the end of his treatments. hmmmmm. I can’t even comment on that last concept.

Last night I was discussing with family members close to me if I should continue writing posts for the blog. I admitted that it takes a little energy (of which I’m lacking), and I don’t get much feedback. Some suggested that I would let down the readers. My reaction is that I don’t even know who the readers are. Others suggested that maybe since Jace is in maintenance, things are different and people won’t be reading anyway. Any thoughts?

I’m guest speaking this week to a group of students. I’m going to tell them about the lessons I’ve learned from enduring something very difficult. BELIEVE me, the lessons are there. The greatest lesson of all for me right now is one in humility.

One of my favorite quotes for a while is this: “Self-searching is the means by which we bring new vision, action, and grace to bear upon the dark and negative side of our natures. With it comes the development of that kind of humility that makes it possible for us to receive God's help. ... We find that bit by bit we can discard the old life-the one that did not work-for a new life that can and does work under conditions whatever” (by anonymous author). I’ve said it before, but I wish so badly there was a different way for me to receive said humility-- but I’m still working on the new life and dreaming of my ability to accept our “new” conditions.

Many parents of cancer kids have told me that things get easier with time. I’ve been exposed to so many people who have fought this very fight, and I know it is a global challenge for thousands. But I’m sitting here alone typing right now, and the truth is, I feel quite isolated. People have even said the words, “Been there, done that,” but when they say those words I think in my mind—no you haven’t—because you aren’t Jace’s mom, and you most definitely are NOT Jace.

But Jace IS in maintenance, and for that we are grateful. His treatments will slow down, and we will continue to watch him hit a few baseballs. This week he could barely run at all, so he decided he’ll just have to start hitting it “REALLY FAR,” so he doesn’t get out— and again, Jace inspires with his positive attitude. Do you think his mom could stand another lesson or two?