New CT scan results and decisions 

I’ve stuck my body in a few diagnostic machines lately. On Friday, I had an MRI on my head to see if there was anything notable that would explain the increasing dizziness I’ve been experiencing.   The results?  All normal. It’s probably just a side effect from Inlyta, my cancer med.  (Which I stopped on Monday, leading to a much clearer, less dizzy head.)

Yesterday I had a CT scan to determine how things are going inside me.  I got the results today. They’re not what I’d hoped for, but aren’t terrible, either. 

There is some progression of disease, but it is limited and small (the greatest growth was 4mm).  So the Inlyta is working, but not very well. It is slowing things down, but not completely. My oncologist said that his first response was that I need to change meds, but as he looked a little closer, he thought that I could stay on it for another 2 months and re-evaluate after a scan at that time. 

Or I can move on to Sutent, which is a first line medicine that is similar to Votrient, the first drug I was on. It’s been around longer, but has more side effects than Votrient. 

So the question now is do I stick with the evil I know, with limited efficacy or do I choose the evil I don’t know?

When he was talking to me, I thought I’d probably stick with Inlyta to squeeze the last bit of usefulness from it (because he tells me once I go off, I can’t go back on it. I’ll try to get clarification on why later).  Then I took a trip to TJ Manx, and realized that Damn, it’s nice to feel good. And I haven’t really felt that at any time I’ve been taking Inlyta. 

So now I’m leaning towards Sutent. I told my doc that I’d let him know my decision by Friday, but I think it’s probably already made.  

It makes a difference 

At kids circle this past weekend, Molly was the only tween in attendance, so she got one on one time with one of the counselors. They walked to Starbucks, and spent an hour or so just chatting and drinking refreshers. The counselor reported back to us that Molly agreed that our trip to Colorado was our best trip ever, and one of the reasons was my high energy level and ability to do activities with the family. 

I completely agree. 

And it’s nice to get that validation that taking my medication vacation was worth it, beyond just my comfort.  Hopefully those good memories will get us through the next few weeks until I take another break. (I’ve decided that will be a few days during the week between the kids’ camps in August.  I want to be able to spend a day playing at the beach with them.)

Today, though, has been quite painful. My arms and legs and hips ache.  I’m tired and cranky. And again, frustrated by the constant weighing of the costs and benefits of taking the cancer medication. Sometimes I wish we really knew what the numbers would be with and without the meds. It might make it easier for me to see the benefits of the drug. 

Or it might make it easier to say the costs aren’t worth it. 

I’d really rather spend what time I have left being able to enjoy life with Reil and the kids, rather than wincing and napping my way through it. 

Plus, it’d be so much more fun to blog about activities than whine about side effects. 

Coming back

Sleep isn’t going to come soon. I’ve taken 4 doses of my cancer medicine since we came home on Friday night, and it’s already causing pain. My bones and joints ache, especially my elbows and my thighs. I just took a Norco, so hopefully there will be some relief soon. I just wish I’d thought of it sooner. Pain management is all about cutting it off before it gets bad. 

It is maddening to have to be back on these pills again. The stupid little rust colored tablets.  I felt so alive and comfortable and almost energetic while on vacation last week. I couldn’t move very well because of neuropathy and dizziness, but there wasn’t any pain, so it was just the issue of working through my unsteadiness. (No small feat, but again, not painful.)

I am once again feeling the anger that was building up in me before our vacation. But that’s not how I want to live. I want to be light and easy.   It doesn’t come naturally with this medicine, though. 

Reil and the kids drove a couple of hours north today to meet up with my mom. As I was kissing them goodbye, I had a sudden fearful flash of “What if there’s an accident, and they all die?” which was just as quickly replaced with a calm: at least I’d be able to stop taking the meds without feeling any guilt about how much it would shorten my life. 

That tradeoff sucks. I have to choose between living well or living a little longer.  We don’t know how much longer (Statistically, it’s about a year longer, but who among us is a statistic?), which makes the choice that much more murky.

For now, though, since my family is all safe and alive, I’ll focus on ways to cope.  With the pain, with the fatigue, with my lessening abilities. My first step will be marking a date in my calendar when I can take another vacation – from the kidney cancer treatment.