April 2019 - Frustrating news.

  

Hi all. It’s been a while!  I didn’t update after my December scans. Not sure why, I guess just because it was a busy time with the holidays and I didn’t have a lot to report. The head scan was stable but there was a drop of growth on my lungs. I was to stay on my meds but we changed up the days that I was on them. I had been doing a week on, week off. I was hoping that I could spread it out a bit more because the week I was off of the meds, I was recovering from being on them and once I started feeling good, I needed to start them up again. But, he wanted me to start taking them every week, just every other day. I told him I would give it a try.  I lasted for a while with that plan but as time went on, I would skip a blood draw. Or I’d skip the med that makes my face swell. I figured some were better then none and I was trying to find that happy medium of feeling good while taking the meds. It’s one thing to be on chemo meds and feel like shit but I’m also a mom trying to take care of kids and pay my bills at the same time. 

So that brings us to now. I just got back from my scans, it had been about 4 months. Going into the scans now I have no expectations. I feel like I’m always thrown for a loop so I try not to expect or hope for anything.  I was getting nervous though because 4 months is the most I’ve gone in two years. And 2 years ago is when I had a new growth after having good scans for two years. So I was wondering if that’s my time? Something new every two years?   A few people I know had their cancer reappear recently too, so that didn’t help my anxiety either. I hadn’t been feeling any different, but two years ago when I had a new growth, I didn’t feel different either. 

My friend Amanda, her son Kai and Shaya came along with this time. They had a few appts in Green Bay and then we moved on to my appts in Milwaukee. I had one scan Monday night and the other Tuesday morning.  After the second scan we went to meet Dr Bobustic. He first went over my meds with me and asked how often I was taking them. He understands that I need to find what works for me. He wants the quality of life to be good while on the meds. I explained how I would skip a few and what not.

waiting for answers

After that he went over the scans with me. He said there was a millimeter of growth on my lungs. And then pulled up the head scans. There is an area that at one point they thought was a new growth but over time decided it was a side effect from radiation. Well that area has now grown so the docs are rethinking what it is. And there is also a new spot of growth just above my ear. 

 All three areas are small and there is nothing they want to do about it now. Maybe radiation in the future (lord help me). But in the mean time, he wants me to be good about taking my meds and is adding a new one to the concoction. This new one was talked about in December and it took this long to finally get it approved by insurance. I should get my first shipment this week.  He explained that the meds work best when all are taken together. Some feed off the others and make them more powerful. So we are going to do meds on Monday and Wednesday of one week and Monday, Wednesday and Friday of the next week. The shorter week gives me 4 days of no meds and that will hopefully keep me from feeling too bad.   He offered going another four months until scans which made me think he wasn’t too worried about it growing fast but I wanted sooner then that so we are going to do two months. 

I promised him I’d be good about taking the meds! A pinky promise was even thrown in there!  I can do it for two months. Then we will see if there was any progress made. And if so, I’ll keep it up. 

ridiculous list of my meds

It’s frustrating. I’m TIRED of this battle. May will be 5 years since this journey started.. I’m SO grateful to still be here for my kids, I just wish things were different. But here we go, I’ll give it my all these next two months and hope for the best.