First Post-Chemo Checkup & More

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. 

Speaking of quality of life, I have a work trip planned to present a paper at a conference with colleague Julie (who I have written about previously) about the role of marketing in promoting the highly inflammatory carbohydrate-rich diet in our society that has made many of us very sick. In preparing for the trip, which is in Scotland in July, I decided it would be so much easier for me (given my visual limitations) if I had Global Entry (which includes TSA Precheck for all flights). I've been working toward this status for what seems like 5-10 years but they sure don't make it easy. First, you have to navigate their very complicated and not user friendly website. Once you have conditional approval with just the paperwork (if you are lucky enough to get it completed satisfactorily), you have to set up an interview at an airport or other location with an agent and it's virtually impossible to get an appointment. I was fortunate that mom has two good eyeballs that process an entire visual field, so she helped with the online application. We struggled so much with it that we were flat out joyful when it was done and the system accepted it. After a day or two I had obtained conditional approval so I set out to find an open interview slot. There was nothing in the entire state of Texas but I vigilantly checked every few hours. Suddenly and unexpectedly, there was an opening on Tuesday evening at DFW in Dallas the day before my Houston checkups. We left Lubbock fairly early in the day and with no real information in hand and lots of doubts that we'd figure this all out, went to DFW at the time I was supposed to be there. I had my interview. I was asked if I'd ever been arrested and I had to think on it for a minute but I'm proud to say that I couldn't ever remember being booked for anything. Therefore, I could declare that I had not ever been arrested and it was a proud moment. I was also photographed and figure printed by the agent, which seemed like what might have happened if I had ever been arrested. As we wrapped up he said it would be about 48 hours before I was approved and to watch the website. I'm proud to say that I have officially had the federal background check and I have been approved as a trusted traveler. I can now enter the U.S. as a trusted traveler, making the process of border crossing and customs easier. I am also going to have TSA Precheck for all U.S. flights, which is also handy for those of us with disabilities.

Once finished there, we were off to Houston for a monthly scan and checkup. The following morning I had to be in the mri machine at 8:15 AM. I had a nice nap. For some reason when the technician came in to give me the contrast dye, he told me to not nap. Perhaps my head was tilting weird when I fell asleep or perhaps he was afraid it would, I'm not sure. They wedge your head in there so tight, I'm not sure how my head could possibly move but what do I know? I'm just a middle aged woman with brain cancer falling asleep in a magnet. Once scanned, it was time to give my regular blood vials so that they can check on how the chemo is affecting the rest of my body. All of that took place at Mays Clinic, which is a building that is connected to but separate from the MD Anderson main building. It's all still MD Anderson, but it's technically a separate building. We like to start our day over there because the 1) parking garage is a little cheaper since it's owned by MD Anderson and not the Texas Medical Center and 2) the pedway that connects the two buildings is rather long- great exercise in the air conditioning. On we went on our indoor hike to the main building and up the stairs to floor 7,  the Brain and Spine Clinic. We got there rather early so we just checked in and waited. What else did we have to do?

This is where all the news starts so everyone keep up! First, I'm consistently at or over 100 pounds these days. I've been super happy about that! It has to be all of my body building activity because the only weight I can put on these days is muscle. Once weight, blood pressure, body temperature, and other vitals were taken, we were put in an exam room like always. We waited (like always) to hear the results of the scan, bloodwork, etc. 

First came the fellow, as usual. I had met her before and she remembered me. She asked if I was still doing the "diet" (A.K.A. metabolic therapy) and I told her yes. She again admired my lotus tattoo, had me walk around the room a bit so that she could watch my gait, and then dropped the news. She said that my scan had changed and in a positive way. What does this mean? Well, let me tell you.

I have now been on this chemo regimen for 2 cycles. A cycle in 28 days, so approximately 2 months or so. We had a scan in April that was considered the "pre-treatment baseline." The scan I'd had that morning was to be compared against the April scan to see what changes, if any, had occurred. 

Let's remember for a moment that for 3 years every time we've had a scan the best news we've had is "stable/no significant change." The worst news we've had is along the lines of "minimal growth, not enough to call it a recurrence (the threshold for a recurrence is growth of 20% of original size)." So, the fellow pulls up the pre-treatment scan from April on the left of the screen and the most current scan from that morning on the right so that we could get a side by side comparison. Also remember that there have always been these 2 spots that we should just refer to as "concerning areas" or as "problem spots." The side by side comparison showed that one of the spots has all but disappeared. It was kind of mind boggling. The other spot is noticeably smaller. By a lot. We're talking so noticeably that anyone sitting there could have seen the difference, no matter their training.  As we discussed it with the fellow, she made the statement, "I think I need to explain that we NEVER see this." I already understood the rarity of a GBM shrinking or disappearing from my own acquired knowledge, but her statement reinforced and validated my overwhelming joy in that moment. I asked if Dr. No Naps had seen the scan. She said, "No, but he is going to want to see YOU!" We all sat there and marveled at this development for a few minutes before she ran off to let Dr. No Naps know I was ready for him. 

When he came in, he seemed very pleased. Jason teased a little bit that I had said in the past that I was planning to bring up the mood of the entire clinic and that I was doing that through this scan. I agreed that I need to be the morale booster for the staff as well as the waiting room so that people can see walking, talking proof that this doesn't have to kill you immediately. We went on the discuss the scans further with him and he made statements like, "Even the radiologist wrote in the report that there was noticeable improvement." We discussed that my fatigue is better with an increase in exercise and that my nausea had improved. He expressed some concerns about liver functioning but just said that we need to keep an eye on it with bloodwork. It was said more than once by more than one person on my team that "if this treatment works, we will be written up in a case study." I'm for that, of course, but I'm wondering if I can get some authorship credit. I mean, if I'm doing all this work, I may as well. Just before we left, No Naps said, "I don't know what you are doing, but keep doing it!" 

So what am I doing? I'm taking 11 chemo pills a day, I'm exercising, eating low carb/high fat, keeping my blood glucose as low as possible and my ketones as high as possible, sleeping well, meditating, and enjoying every moment I have left. I don't care if I have six days (almost a week), six thousand days (16 more years), or sixteen thousand days (until I'm 88), I'm going to live every one of them as fully and as positively as I possibly can. 

Next on our agenda was to go to the Houston house, get something to eat, get packed up, and move toward Denver. Jason and his friend Joe (who lives in Denver with his wife Rachel) are hanging out with a friend this week who is in from Germany. Since Rachel and I were eager to hike a 14-er this summer, I flew up from Houston so that we could just try to do both at once. If you don't know what a 14-er is, that's because it's a Colorado thing. To qualify as a 14-er, a mountain must peak at or above 14,000 feet. Depending on who you ask, there are either 58 or 43 in the state of Colorado. The reason for the discrepancy is that the technical definition says that the peak must exceed 300 feet above 14,000 feet. Following that definition, there are 43. If you go by the surveyor definition of 14,000 feet or more, there are 58. It's become a bit of a thing, to do one or more and even to build a portfolio of how many a person or a group has completed, by which trail, in how much time, etc. We told No Naps we were planning this adventure and he just said to be careful and to not take any selfies while up there. I told him that I would have Jason walk to my left so that I wouldn't be in danger of falling off a cliff and that if Jason fell off, that was just one less thing I had to worry about. No Naps thought that was funny but Jason didn't seem amused. 

Jason dropped me at the airport in Houston as he drove on ahead, planning to stop along the way and meet me in a day or two. I'm now in Denver and he is somewhere between here and Texas. When I got here, I heard from a friend and a lyft driver that there was so much snow this year that getting to the summit is going to be difficult if not impossible. Rachel and I discussed and we may be set back a little, but not deterred. We are going to hike in Breckenridge this weekend. We may try to go up to see how far we can go. If we need to, we will postpone the summit hike until August or September. I mean, we've waited this long to walk up 14,000 feet of elevation. What's a few more months? It will happen. I'm trying to figure out how we might make this whole 14-er thing into a fundraiser for brain cancer patients who can't afford their medical bills. Maybe I do one and then, if it goes well, I get people to vote for the next mountain I will hike with their dollars (all of which will go toward the best care for patients who are at an economic disadvantage). Maybe we can have t-shirts! Maybe more people will start hiking 14-ers to raise money! Maybe we can be on a TV show! Which one should we shoot for?! While you guys are thinking about that, I'm going to go enjoy the feeling of cancer cells being cleared up by the chemo.