On Saturday we drove the 8 ½ hours to Houston so that I could go to my full day of doc appointments on Monday. Since my last appointments in June, I have been getting acquainted with my temporary Peli glasses and they seem to help in all sorts of situations. I can see people coming on the left, so they don’t just appear in my line of vision and scare the crap out of me. I also don’t see only part of a car coming toward us when I’m riding in the passenger’s seat. Overall, I’d say they are doing a great job for seeing at a distance, especially.[...]

We've been home in Lubbock for a while now and I think we've finally recovered from our road trip. I go into work each day, motivated to finish my online class, get summer data collection started, and write up some studies that I've been wanting to get back to. I was supposed to go back this week for my check up, but MD Anderson moved all of my appointments to July 9, so look for an update in about a week. If there's one thing I've learned, it's that I can plan a plan but not an outcome. I must stay flexible in order to stay sane. [...]

I saw my doctors in Houston the week of June 2-6. On the docket this time were several blood sucker appointments, chemo refill, and a consult with a doctor in the clinical trial department. She explained that they are looking into "precision medicine" for me- if I qualify. She explained that people use the term "precision medicine" to mean many different things, but she is using it to mean customized for each patient's situation. They are using a small piece of tumor from the September surgery to see if I have (or more accurately, if the tumor has) some specific epigenetic mutation that they can target. I really liked this doctor. She's Greek, she has an MD as well as a Ph.D. in research, and she realized immediately that she could talk to us on a pretty high level- I always appreciate that. The neuro-opthamologist also modified my glasses so that I can begin getting accustomed to the Peli glasses. I'm not sure if I've adjusted to them, but I'm trying.[...]

I am now on the "maintenance" chemo, which is a pill for 5 nights followed by 23 days off, followed by 5 days on, etc., until the docs decide I'm ready to go off or try something else. I've been in Lubbock for two weeks and have enjoyed being with my little family, seeing friends, and getting into work some. [...]

If you are keeping up with the class readings, you know that Wednesday was scan/ check up day at MD Anderson and you'd be much better at keeping up than are my students in my class. We flew into Houston late Tuesday night and were up at 5 am to get to my 6:15 scan. Of course, when we got there we found out that there was a flag on my account that was ambiguously related to the insurance approval. I had received a letter a day or two before we went that said the MRI was pre-approved. Of course, I forgot to take it with me because I assumed that MDA would also have been notified. I was wrong, as not only did they not have the pre-approval letter, the insurance was also claiming that there was no referral from my PCP. When BCBS took over as the overseer for the state of Texas medical insurance, I was required to have my PCP give another referral for MDA. This was done and I have not had any trouble from January until this week. So why did the insurance claim there was no referral? I have no idea. Luckily, I have the best PCP ever and we were able to find him via telephone and he immediately had his people make the necessary referrals. MDA did the scan because they could see that the insurance has been covering me for all of 2018. Of course, since BCBS has outsourced their claims department and the claims department has been rejecting approximately 80% of claims (even after the medical side pre-approves procedures and tests), I'm sure the claim will be rejected when they get it. I still haven't seen any payments for the proton therapy even though we have plenty of evidence in both writing and recorded conversations that those procedures were all approved. Since claims won't pay anything, I can't get reimbursed for the cash I laid out. I guess the strategy is to hang on to the money for as long as possible. This is fine because after I've gone to the media, I will just make sure my attorney sues for lost interest, stress to a cancer patient, and consulting fees for my time writing up my insurance appeal. Has no one told these people to never mess with a smart, determined person with little to lose?! [...]

After my last radiation and follow up appointment with the radiation oncologist on April 20, Jason drove me home to Lubbock where I've been since. I've been able to get some things done around the house, I got to see Aidan play tennis (I'd never been in town since he started playing), I've been able to see lots of people, I've gone to work most days, and have been able to spend time with my family. I think I'm finally over the post-treatment hangover because the nausea has dissipated, I'm sleeping well, and the fatigue and brain fog are slowly getting better.[...]

This morning, like most mornings in the last 4 weeks, I got up at 5 am, got myself ready, met Lois outside, went to the proton center, got strapped to the table, got zapped 3 times, and then released. Afterward, like we've done every Monday and Thursday, we walked to the Mays Clinic to do a blood draw and then back to the car to drive home. This morning was number 19 out of 20, which means tomorrow is "graduation day." I'm so ready! When I discussed the radiation/chemo treatment re-do with the oncology clinic four weeks ago, they said side effects could be more intense in the second go around. Once again, they really need to adjust their language because I was not sufficiently prepared mentally.[...]

As of tomorrow, I will have 3 weeks of proton therapy in the books with one to go! Overall I feel pretty good most of the time, but I’ve had to severely adjust my sleeping schedule. I try to be finished with the chemo routine and in bed by 8 PM each night so that I can get up before dawn. That’s right, not only will I have male pattern baldness, I’m sleeping like an old person (in bed by 8 and up at 5). It’s so delightful! The first day the appointment was late at night but after that, every appointment has been in the wee hours. Today’s appointment was at 6:30 AM and there’s one next week at 6:00, but they are most frequently at 7 AM. This means that I drag myself out of bed, drink as much coffee as I can, and then go to the proton center where my head is attached to a table so that I lay perfectly still while they shoot a proton beam through my head three separate times from different angles. It’s delightful. I know some people like to be strapped down. I’m just not one of them, so don’t be jealous if you are one of those. It’s not like you think- just trust me on this.[...]

Yatra is a Sanskrit word that means a journey, a festival, or a pilgrimage. Although typically the word yatra is used in the context of religious journeys, festivals, and pilgrimages, it is not necessary for a yatra to have a religious context. I would argue that we often find ourselves on these paths against our own preferences and that our job as individuals is to recognize that our path has become a yatra, go with the twists and turns of the path, appreciate the yatra for what it is, appreciate the gifts left along the path for us to find, and do what must be done to continue on the path. This is the philosophy that has taken me this far and now that my path is turning yet again, I’m having to dig deep and find that appreciation and perseverance (a.k.a. stubbornness) that has brought us here.[...]

Well, we met with the LITT expert on Wednesday, although he was adamant that he is a neurosurgeon, not the "LITT guy." So, of course, from here on out that's how I will refer to him. He's now "Dr. LITT." Clearly no one warned him about me. He wasn't my favorite doctor ever but it actually doesn't matter because he said I'm not a good candidate for the procedure. Basically, my little spots are too close to vascular structures and ventricles. These structures are full of blood or cerebral spinal fluid, which will cool down the laser. Since the laser uses heat to kill the problematic cells, if the heat is cooled by these structures, the procedure becomes less effective. [...]