And then there was surgery #3

On January 15 (3 weeks ago) Katy and Jane arrived in Houston. Kim is usually here for surgeries and although we needed her superior skills of micromanagement, she was not able to come this time. Jason's sister Cass was also able to come over from Austin, so we had some great help. We got up extremely early the following day and drove to the hospital so that we could check in before 6:30. As we were all running a little late and I was feeling like I'd forgotten everything I needed, that was the first time I realized that Kim is the one who keeps us all in line for surgeries and that she was very much missed. We had planned ahead a bit to inform the newbies of what to expect. She wrote a lengthy text describing the basic schedule, needs, and preparatory advice. It was a nice synopsis of what everyone should be expecting and how to prepare mentally for the experience. Since I'm typically extremely busy during the surgery itself, there were things I was unaware of that go on in the waiting area. For example, she kept referring to where they might want to sit, etc., and using the phrase, "for more privacy." I had to tease her that I am not sure what they are all doing out there that they need so much privacy, but that phrase seems highly suspicious to me. I decided that since I'm occupied during that time, it's none of my business. Let them have their privacy.

Anyway, the five of us arrived mostly on time and checked in at the surgical desk. When they called me, Jane and Katy went with me to my prep room where I put on the surgical gown and waited for the party to start. Next, like before, the surgical fellow came in and introduced himself. He was very smart, very nice, and very good looking. When he leaves MDA he's off to Harvard, so I was feeling like my surgeon's backup was up to par. He asked many questions about my diet and seemed pretty interested. Of course, I told him all about it. After he left, the anesthesia team came in to get me all hooked up. They usually give me Versed, which they refer to as the "I don't care medicine," which not only makes you not care but also makes you forget everything. For the two prior surgeries I remember not more than 5 minutes after they gave me the injection of versed. This time they gave me Fentanyl, which is the drug that people overdose on when they mix it with heroin for recreational drug use. I didn't remember that it was Fentanyl, and there was some confusion about that later but now I know it was. That drug had me flying. You'll have to ask Jane and Katy if I was funny or obnoxious, but I'm choosing to believe I was funny. I remember being wheeled to the operating room. When I got there on the rolling bed, I looked to my left and saw there was a surgical bed/table there. I told them I could scoot over and the nurse said, "Great. Put your head on that foam pillow." I look at the foam pillow. It was a dense foam, small, about 5 inches thick, with a hole through the middle. I said, "Oh, it looks like a doughnut!" the nurse laughed and told me that they actually call it a doughnut. I realized when I put my head on it that the hole was so that when they turned my head to the left (so that they could open my skull on the right side), my ear fit perfectly into the hole. Once moved, the nurse asked me how I was and I replied, "these anesthesiologists have me feeling pretty good right now." She must have then told me that she would be giving me Propofol to knock me out for the surgery because we then had a delightful conversation about Michael Jackson. She felt compelled to tell me that Michael Jackson had "alot of problems" and "he did not have medical supervision." She followed up with, "But you do. You are in good hands." I asked if she called the plastic surgeon to come and give me a breast augmentation while I was out and she said that they had forgotten to have me sign the consent form. I like that woman a lot! She gets me. The last thing I remember is my surgeon coming in, asking me how I was feeling, and holding my hand for a moment. 

The next thing I remember was waking up in the recovery room having a bad reaction to the anesthesia. During the first surgery recovery room experience, there was a man nearby having a bad reaction to anesthesia but this time it was me! Once I was stable, Jane and Katy had to get back to Austin so we said our goodbyes and they took off. I guess it's not such a great girls' trip when it involves brain surgery and puking. I try to be a great host but I can't be all things to everyone. Sorry, friends! I will make it up somehow. I promise.

Shortly thereafter I was able to move to a room, where I proceeded to try to eat, take pills, and drink. I threw up repeatedly. At one point Jason told me that it had been 36 hours since I'd eaten and kept it down, and yet my glucose was very high. Allow me to explain. Before the surgery I had a long talk with the surgeon about steroids and glucose and how this conflicted with my diet, which we wholeheartedly believe is the/a factor in slowing my tumor growth. He agreed that the hike in glucose readings while on steroids could be a problem but that I had to have steroids for the surgery in case there was swelling. He promised to taper me as quickly as possible and it turned out that I was tapered off within a few days. They also had orders for the nurses to test my glucose before and after every meal in case it got so high it scared me. 

Of course, there were people in and out all night long and since I really hadn't slept much the night before the surgery, I was pretty exhausted and having some trouble regulating my emotions, mood, etc. Jason didn't have much patience for me at that point but I guess we have to forgive him because he's made up for it since then. I suppose he was just as exhausted and worried and also may have been having trouble regulating his own internal signals. The following morning his sister had to go back to Austin so I just saw her for a few minutes before she took off during the wee hours of the morning. I was so glad that Jason had the three of them for support and when I asked him later, he said that there were a couple of moments when he realized that he was also grateful to have them all there. In reading Kim's itinerary text and then listening to Jason, it seems that the waiting room and the update visits with docs and nurses are somewhat stressful. Luckily, I was off somewhere hyped up on fentanyl and propofol so I wasn't feeling any stress at all. Surgery was on a Wednesday morning, Jane and Katy left that afternoon, Cass left Thursday morning, and they had me up walking late morning Thursday (like always). 

I continued to struggle on Thursday with nausea and got very stressed about my rising glucose. People came and went and they all wanted to know how a GBM patient was doing as well as I am after 3 years. I told them all about the diet and all were very interested in hearing all about it. This included nurse practitioners, fellows, other types of doctors, and lots of other medical professionals. My surgeon came by to see me and began asking more questions about the diet as well. He explained that he once had a colleague at MDA who was a "believer in this diet that you are talking about" but that colleague died several years ago in a tragic accident. Then he said, "He would have been very interested in talking to you." Basically, it sounds like the doctors are starting to notice that this thing they can't explain, why a GBM is not growing when normally they grow at an extremely fast rate, may have a metabolic explanation. We've also noticed on my patient portal that they were running several blood tests they hadn't run before including A1C, POC, and others that I had to look up. All seem to be related to understanding my low glucose readings.

On Friday I saw the OT and PT, walked up and down several flights of stairs to show them I could (because we have three floors at the Houston house), and they told me I would probably be going home later. The surgeon came by one more time to check in on me, explained that the post-surgery MRI showed some "residual tumor" (which is typical with GBM, told me I was doing great, and that the paperwork for release was being processed. Later that day I was sent home. Surgery Wednesday morning, released Friday, like usual. It's amazing how fast they have you out of there. 

Since then I've seen the surgeon once for a checkup where he and his nurse debated whether it was too soon to take out the stitches. Ultimately, she won and instead of 10 days I was told to wait 2 weeks. Basically her argument was that since this is my third surgery using the same incision, there is usually scar tissue and healing takes longer. That meant I had to wait to get the stitches out, but I had to go in to see my oncologist anyway.

The following Wednesday I went in, the nurse took out the stitches, and then Dr. No Naps came in to tell me that he wants me to see a doctor about clinical trials. I've seen this doctor before but only for a consult. At that time, which was maybe 6-8 months ago, I was told that they wanted me to see her to establish a relationship so that when/if there was a clinical trial available for me, it would be easier to get me in. I explained that I was on my way to a conference the following day and that I could go anytime the following week (which is this week). He said they'd work on it. I asked what the trial would be and he said he wasn't completely sure because they have so many, but probably a immunotherapy/drug combination trial.

The following day I flew to Long Beach, CA to meet my friend and colleague, Julie , where we presented a poster at the Metabolic Health Summit on the role of marketing in rebranding the ketogenic diet as a medical diet that it actually is and has been for hundreds of years. Not having stitches meant I could wash my hair and not have as much incision pain. 

I had been to this conference before in 2017 in Tampa, so I knew many of the people there. I actually send data on diet, exercise, sleep, blood glucose/ketone levels, etc. to some of the researchers semi-regularly. I was happy to see that 2 of the 3 GBM patients I met at the last conference were there again and in good health (well, for having brain cancer). The third had passed away a few months ago and while that's sad, that's the nature of this journey. I'm actually somewhat tired of that aspect of it but it's just one day at a time. One foot in front of the other, knowing that anything can happen and my job is to follow my self care regimen as closely as possible and to stay hopeful while enjoying my life.

We heard almost immediately that the medical keto community is urging us to use the term "metabolic therapy" instead of "ketogenic diet" because this is a medical diet that has been shown to treat epilepsy, cancer, alzheimers, traumatic brain injury, autoimmune disorders, and inflammatory diseases, and lately even heart disease and mental health. Calling it a diet has become fodder for people trying to lose weight and It's fine for that, but it muddles the message and can confuse the issue for people who need a metabolic therapy to treat inflammatory disease. 

So let me tell you about my friend and colleague Julie. In summer 2015, I taught in Norway for 6 weeks or so in June. I came back to Texas and stayed for about 10 days. Then I flew to Italy for a conference in July, where I saw her. We walked across the street from our hotel and had a wonderful meal of pasta, bread, and sauces. In other words, mostly carbs. Suddenly, in the restaurant, I started to have an eerie sensation of "I feel like I've been here before" mixed with visual agnosia. Visual agnosia can take several forms but mine was the perception of knowing "that object over there is a table but it looks out of place." Also, the tables looked out of place because they looked as if they belonged on a boat and not in a restaurant. It was a strange sensation. When I left Italy, I met Kim in Croatia and I didn't have another of those episodes until I returned to Lubbock a week or more later. I chalked the whole thing up to jetlag and too much travel until I continued to experience similar episodes back in the U.S. 

Eventually I started to record these episodes and began taking my blood sugar because I thought it may be hypoglycemia or something. Finally, in January (months later) I saw my doctor, who sent me to a neurologist,  and I learned that these episodes are called simple focal seizures or sensory seizures. He set out to find out what was causing them and that was still in process when another doctor ended up doing a CT scan the following month and found the tumor. 

After the first surgery, when I was still in Houston and blogging about the keto diet as a metabolic therapy for cancer, Julie was reading the blog and (unbeknownst to me) had been learning about and following keto for quite sometime before my diagnosis. She happened to be in town for March Madness, we went to brunch with a group, and she gave me books written by Jimmy Moore (Keto Clarity and Cholesterol Clarity) as well as David Perlmutter (Brain Grain). By the way, both were at this conference. So, you see, Julie has been with me on this journey since the very beginning whether she wanted to be or not. Therefore, it was fitting that she was meeting me at a conference just 2 weeks after my third surgery. The two of us have had a lot of fun writing papers on consumer health and well being around this metabolic therapy and plan to continue to expand in this area. In fact, we have a paper accepted to a conference this July in Scotland and I fully intend to be there! As far as these trips go, my doctors tell me that they just want me to live my life as fully as possible and to enjoy everyday. They make time for me to go and will shift appointments when needed. What they don't want is for me to sit down and give up, I guess some patients do that and it doesn't bode well for longevity. 

So the conference was wonderful and everyone was pretty amazed that I'd had surgery just 2 weeks prior. I got a little tired at times but it wasn't so bad. I arrived in Houston on Sunday and I've basically rested physically for 2 days. Fortunately, it doesn't feel like work to have my laptop open sending emails, writing, and teaching online.

I heard only today that I will be seeing the clinical trial doctor on Monday to learn more about what they have in mind. I'm hoping Jason will be able to come and join me for that appointment but waiting to hear if he will be able to. Aidan has his Nana and Papa but I do hope to be back there as soon as I can be!