Maintenance 23 days in

Dr. Engle says that during maintenance, cancer should cease to dominate our lives and become a nuisance.

The first week involved steroids which dominated our life. Steroids mess with emotions and perceptions. They affect a lot. Add to that, pills.

Emma hasn't had to take pills for a few months. They have never been easy. We have paid to get them compounded before because our insurance doesn't cover compounded medications if there is any other option at all with the drug.

Maintenance began with 9 1/2 pills. She had forgotten how to take them and we had to start over. One pill was really big. We tried a lot of things; but you can't hide 6MP in food. It loses efficacy if you have food or dairy an hour before or 2 hours after.

It took long enough that the experimenting reached a point that I had Emma lying on my lap and was shooting pills into the back of her throat with an oral syringe.

That worked for nearly a week. It was unpleasant and involved lots of tears.

We tried to get the biggest pill compounded; but that one cost more than $100 - not a chemo, but a drug to counter the corrosive effects of the steroid in her G.I. tract. The pharmacist talked us through that - it looks like a time release caplet. It wasn't.  We could break open the pill and give her the grains inside.

We got past the steroids, thankfully. They will recur monthly.

Fridays there are 1 1/2 6MP pills, and 6 methotrexate pills. The methotrexate gets adjusted through maintenance and so each pill is a tiny dose. So she takes several. Saturday through Thursday she gets just one 6MP. 

Shooting pills with water in a syringe was creative; but pretty soon she managed to block the pills with her tongue and swallow the water. I had to stick my finger in her mouth and push the pills to the back, past her tongue and away from her teeth.

Tears and crying, oh yes. That is the only thing that we have that works right now.  We are past crying. While neither of us like this at all,  we haven't worked out a better way to get the pills down.

We have practiced with M&Ms, which she chews and sucks. Further, she can't mentally associate pills and M&Ms.

With all that, though, we are getting out more. We haven't been to the hospital in more than 3 weeks. She is stronger, healthier,  has more energy and stamina.

It is a busy, active, summer. I don't think it will slow down.  Cancer is becoming the nuisance that Dr. Engle says  that it should be.