Dear PostHope friends,

I am STILL back at home and under the medical care of Hospice of Lubbock, supervised by Mom, Jason, and Aidan. (Jason is the ghostwriter, for an unconscious Shannon.) This hospice group is full of truly wonderful people, and they're now also my family. I recommend non-profit hospice services to anyone. It would take far too long to express how extraordinary they have been. Take my word for it. I have a lot of experience and I know what I'm talking about.[...]

Hello, PostHope readers. I am back at home (with Jason ghostwriting for me). In early December, MD Anderson said that although my MRI scan looked better than the last, they were dissatisfied with my physical progress. Apparently the scan is irrelevant in the face of declining functioning, just like I heard in Dr. David Berry’s neuropsychology class way back in grad school. Just ask him. He’s super social. [...]

Update for Shannon's support network (written by Holly from Louisville) 

The week before Thanksgiving, Shannon's friends Beth and Randy visited her in Houston. Along with Shannon's brother Steve, they went with her to MD Anderson where she received her first Avastin infusion. This goes after the blood vessels that are feeding tumor cells, so it is a tumor-starving therapy. It also gave Shannon some headache relief but we won't know for sure how it's working on the tumor until the next MRI in mid-December.  [...]

Hello Shannon’s support network,

It is actually winter in Houston! We had to turn on the heat this morning. Yikes! For those of you in snowy areas, please stay warm and dry. I am your guest contributor for today, Wendy, Shannon’s friend and colleague. Shannon requested that I write and give you all an update. Shannon’s brother, Steve, is here as well to help with all things.[...]

In the past couple of weeks, I have started the new immunotherapy clinical trial. The first infusion was on October 9, the same day I started the pills. The pills pump up my immune system, the IV chemo seeks out a specific mutation that all GBM cells have, and then the ramped up immune system attacks the cancer cells. A couple of days before the first infusion, mom and I walked 6 blocks to the Breakfast Klub in Houston for breakfast. As I was eating I started to feel nauseous, which was weird considering all I'd taken was my seizure med (although this was not the first time that med has made me nauseous). Why is it that you can never remember where the bathroom is in an emergency? I stood up, told mom I needed to find the restroom, and then projectile vomited onto our table and plates. A wonderful woman working there ran over, put a wet rag on my face, and walked me to the restroom. She then ran a person off who was in there and put me over the toilet. As my mom was cleaning up my clothes and getting me calmed down, Miss Jackie whipped together the staff to start cleaning up the mess I'd made (there was a trail of vomit all the way to the bathroom) and then came back with a free(!) t-shirt to change into! Everyone was so awesome! They gave us more breakfast to go! Jackie and I even took a selfie together as she told me about another GBM patient who frequents the Breakfast Klub. Moral of this story? Vomiting in a restaurant can result in a free t-shirt and new friends. [...]

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. :).[...]

So much has been going on, I promise to try to fill you in as briefly as possible. I may not be able to pull off my typical so bare with me. Let's start with Scotland. I had a fabulous time at the Academy of Marketing Science World Marketing Congress seeing old friends and colleagues, meeting new ones, and presenting our paper on metabolic therapy for treating disease. For those not in marketing academia, there are researchers studying healthcare and food consumption, consumer well being, etc., and that's where our research seems to fit. Julie arrived on a Sunday, I arrived on a Monday (after a one day delay due to weather on the east coast of the US), and we presented on a Thursday. In the interim we enjoyed the other conference activities and found time to explore the area around the hotel a tiny bit, which was in the old town area of Edinburgh. For those who haven't visited before, it's pronounced "Edinboro," something I'd heard people say and often thought they were just saying it weird. But no, that's really how it's pronounced. [...]

Colorado was so much fun with friends. The tops of the mountains were snow covered, so we opted out of going to 14,000 feet. Our rental was at around 9700 feet elevation so we hiked down about 700 feet elevation through the town of Breckenridge, then back up to around 10K on the side of the mountain, and back down to the cabin. It was still hard because there was some snow and some wet (slippery) spots but I think we all had fun. [...]

Since my last update, I've been back to Lubbock where the Nana was spoiling the boy fervently and he was not complaining. She and I worked together to figure out how to use the cream I was given for the chemo-induced rash. It seems to help when I need it but luckily, I don't need it all the time. The rash comes and goes. This is a good thing because Mom and I were vigilant about applying it at the same time every night but once she left, Jason is less interested in keeping up the schedule. While in Lubbock for a couple of weeks, there were short but productive days at work, fun days and evenings watching our boy play basketball, and increased exercise routines in an effort to decrease the chemo-induced fatigue, all of which were great for quality of life-- which is always my primary goal. What's the point in working so hard to get through a serious illness if you don't have quality of life? In my book, there is no point otherwise. [...]

As everyone knows, I've long since decided that this multi-pronged chemo treatment is going to be my cure. However, it appears to be kicking my ass. I have met a truly formidable opponent. I'm tired all the time. I throw up on a pretty regular basis. I have the disgusting smell of rotten eggs coming out of my nether region. My skin has the appearance of a pubescent teenager and hurts like nothing I've experienced from infected pores. Just in case you were considering this regimen for yourself, let me be the first to discourage you. In my case, the upside has the potential to be worth it. Therefore, just say no.[...]