Calling My Village!

Since the last post, I've had 2 questionable and what No Naps called "worrisome" scans. The second one, worse than the first. I had a spinal tap that turned up nothing significant, and I am now hosting 4-5 "trouble spots." and starting a clinical trial on Monday. This trial combines two types of chemo, one pill and one infusion by IV. I'm on the pills twice a day for 3 weeks and then one week off of those. The IV chemo involves every other week in Houston for this month and then every week for a  while, then later it could fluctuate some, etc. The pills can be taken anywhere but the IV chemo needs to be administered and monitored in Houston. To make sure this is all possible, my family members (and some friends who want to) will take turns being in Lubbock to help with Aidan and/or coming to Houston to sit with me on long days and/or hang out for moral support. I will want Aidan here in Houston with me when he can come, of course. If you have interest in participating, let me know approximately when you might want to come. We did this in the very beginning of this journey, in 2016, and there was a lot of interest. It was also very helpful to have rides to treatment and someone to hang out with, and/or wait in the waiting room, in case someone was needed. Plus, with IV chemo, some of the days are VERY VERY LONG, so it helps to just have friends and/or family to hang out, laugh, or cry with. PLUS don't forget that (contrary to the statements of my first husband's lectures) I'm smart, fun, and an absolute joy to hang out with. :) Most importantly, perhaps, is what a loyal friend/family member I am :). Short of legal issues, what's said in the chemo room stays in the chemo room. :).

I am looking to apply for Angel Flights for rides to and fro. If I have other out of pocket expenses, like more proton radiation, I may need to do another fundraiser. In the meantime, I need to just get back to status quo and stable (neither of which mean remission, as there is no remission in GBM.) Weirdly enough, apparently some folks in Lubbock have either concluded or have been told that I'm in "remission," so just trying to clarify this is not and has never been the case. Nor will most brain oncologists ever use the "R" word even if I had "no evidence of disease," the preferred term that has also never applied to  me and my curent situation. 

It is also possible that, since my financial situation could and will change dramatically at any time, that I may be faced with other financial needs. So, again, we will just wait and see on that and hope for the best--- that I'm able to keep working, able to handle maintaining a medically needed household and the family home with Aidan and my parents/other family who plan to come to help in Lubbock and Houston, etc.

So a more immediate concern right now is that because of where the new spots are (or those in the neuro field, it's the basal ganglia), I'm at increased risk for stroke, seizures, and Parkinsonian symptoms. All of that plus my vision issues and my chronic low blood pressure means super high fall risk. Given all of this and starting a new drug combo, I have been told that being alone is just not advisable. As we approach decisions on who will come where and when, I'm trying to keep awareness that Aidan is 15 and needs backup as much as possible. I cannot stand the idea of him having to be in a situation where he finds me unconscious on the tile (luckily when I have fallen at times, I've always woken up before anyone finds me) or feels like he has to take care of me in a serious way, or doesn't have anyone to help him out if something does happen. Hence, the decision to bring family to help me and to serve as backup for him.

For now I will be in Houston with my mom, taking care of all the little things that require attention, and get started on this trial. Do text, email, call, etc. if you think you might want to help out at either location with an approximate time in the next few months. Well, assuming I make it that long. I'm serious. This new situation is really NOT GOOD. But that does not mean that my village and I can't get through it. Unfortunately, some of my main support has moved on. So that's why we need backup. Please consider reaching out with ideas, help, possible visit dates, etc., and I will do my best to make sure I or someone gets back to you.