End of chemo for now

There is no solid evidence that chemotherapy is effective in prolonging time before brain tumor regrowth. Surgery and radiation do. It's unknown if chemo does.

With no scientific proof of effectiveness, no tumor to measure on my scans, and the fact that my quality of life is shit when I take the meds, I've decided to stop all together. Two of my 3 specialists agree, including the one that prescribes the meds. Neurological symptoms have persisted and may never fully go away. The main one is a change in taste. At first, everything tasted awful, even my beloved chex mix. Now I can enjoy some food again but it's hit or miss. Most days I force myself to eat a normal lunch and dinner. I have a hard time cooking for the family because I look in the pantry and nothing looks good. 

I've lost about 20 (unhealthy) pounds since the chemo in December and dropping the steroid in early January. It doesn't make me feel good to lose it. I originally wanted to be at this weight after training for a 5k last summer so this kind of loss just makes me physically feel weak and also bummed about not running. I can walk a mile but I can't run.

When there's regrowth (not "if there's regrowth" with my disease) we will have the options of another form of radiation like gamma knife or stereotactic, another surgery, or chemotherapy with the same type of drugs as before. I'm hoping for option D; a better drug with less side effects that is FDA approved in the meantime. 

One radiologist seemed to think my tumor was slow growing over the 6 years between scans so we're hopeful it will be at least that long or longer before it affects me again. We are going to be vigilant with frequent scans and meetings with physicians often. I am still regaining my strength and stamina for... life in general. I'm sleeping a lot still. Doctor said it could be 3-4 months or even up to a year to feel like myself. In general, I'm sick of feeling sick. I'm happy I'll be able to start feeling better.

This medical decision came just before a major family change (didn't affect my decision). Our nanny is moving on to another family. She's been so good to us, but we have to say goodbye at the end of this week. We found a daycare for Ellie that we really love. Bigs will be in school before care for 3 days a week. 

We are now a two car family again. I won't brag about how I got almost $2k off the price of the car. Oops, too late ;)