Today was about the same as every other day this week. The neighbor at the condo told me that I may start to get tired in the second or third week of proton so I am going to watch for that (I had my 5th treatment today). My scalp is a little more tender from the burn of the radiation and I've been told that this might get worse before the end of my treatments. I also think my hair may be thinning some, but I couldn't care less about my hair. Hair is the last thing I'm concerned about. I'm also not interested in wearing a wig. Perhaps a nice scarf, but I'll wear my bald head and scar proudly![...]

We continue to be grateful for the donations coming in. I can see the names of donors but not the amounts yet, as that information goes to the site administrator (Jane). I will get some thank yous out as soon as I can after I see the official list from Jane. Again, so grateful to be building a backup fund for in case insurance never comes through. In the meantime, I will also be putting together a plea for the ERS board, state representatives, and United Healthcare. Once I have that together I will post it on the blog in case anyone wants to use my facts for their own letters.[...]

So, first of all, let me just say how overwhelming and humbling it has been to have so many people stepping up to help us financially. We hope that we won't need it and will be able to return it, however, it gives us such peace of mind to know that we have such a nice starter fund in just 24 hours! What amazing and generous friends and family we have! [...]

Multiple people have offered to help fund raise for Shannon's out-of-pocket medical expenses, but she and Jason previously declined such offers because they felt they had good insurance and the personal resources needed to get through an unplanned and unexpected situation like this one. They have always worked hard, lived within their means, and diligently saved for an emergency such as this. They both have steady incomes and are far more comfortable being the ones making donations, rather than accepting them.[...]

Second round of chemo pills last night went fine. I'm having some trouble getting the recommended calories for the day and the doctor increased my carbs to 80 mg per day. This will give the healthy areas of my brain much needed sugar, however, it is not enough to feed the tumor regrowth. Also, 80 mg. will keep me in ketosis (I smell terrible by the way). I talked with colleague Donna Davis this morning and she told me about Lily's sweets (http://lilyssweets.com/lilys-story/) named after a brain cancer survivor. They sell low carb/ sugar free alternatives for people like me who love sweets![...]

Well, after a very long day yesterday and a series of miscommunication, I did have my first proton session last night. We had several phone calls in the morning asking us to get some tests and the chemo pills. We did all of that, and then when we got to the proton center they told me I was starting on Monday because I did not have my tests done & chemo pill. I forcefully pushed the issue and they got my radiologist on the phone. He agreed that we should and could begin and told the proton center to go ahead with treatment. The first time lasts 1 hour because they have to xray between every proton beam segment ( I have 4 segments). Today's session lasted only 30 minutes and subsequent sessions should be 20-30 minutes. Nothing about the treatment hurts, however, being strapped to a table for an hour was very uncomfortable. I will post some pics at some point so that everyone can see the mesh mask that holds my head to the table.[...]

I am a tenured faculty member at Texas Tech University and I have been diagnosed with Glioblastoma (GBM). GBM is an illness that strikes educated men and women (the majority of those diagnosed are educated white men in their 60’s). Approximately 2-3 people per 100,000 will be diagnosed with GBM in the U.S. and Europe, however, educated and white/Asian people are at slightly higher risk (Dubrow & Darefsky, 2011). GBM is a type of glioma, which strikes 6.7 per 100,000. Brain tumors, in general, strike 21.97 people per 100,000. Some of you or people you know might also be affected by this (I hope this never happens). According to the state of Texas Higher Education Coordinating Board, there are 45 state universities and many other community colleges and technical schools. Although I cannot find a headcount of faculty and staff at these institutions, ERS reports that there are currently 516,565 participants in the group benefits plan. That means approximately 10-15 state employees or dependents will be diagnosed with glioblastoma and 33.5 will be diagnosed with some type of glioma (Hess, Broglio, and Bondy, 2004). Approximately 110 state employees or their dependents will have some type of brain tumor. In general, cancer of some type strikes 25% of the general population.[...]

So after an emotional roller coaster with insurance, liquidating savings, not having the chemo pills yesterday, and then having my radiation appointment drop off the online scheduling system, we have just verified that treatment is starting today. The chemo pill is being called in and I will take it this morning. My radiation is scheduled for tonight at 6 PM. Today, tomorrow, and Monday are evening radiation and then we start mornings next week until May 4. This delay has been driving me crazy. I just need to feel like I'm doing something to fight this and for the last week and a half (really the last month since my surgery) I've felt like a refugee. In the last couple of days I finally had some minor meltdowns for the first time since this all started. Jason doesn't take those well so it's been a little tense. I'm just so happy to be moving on with this![...]

Jason and I got up early and went to the Proton Therapy Center. We met with the business person and the person handling our appeals. We were given a 35% discount and then we wrote the largest check we'd ever written. We were able to cover the full amount (I have never been so grateful for hard work & Jason's devotion to saving). We did have some family on standby to wire some funds if we came up short but luckily, that was unnecessary. Once the payment went through, we discussed when and how the treatment would be scheduled.[...]

We got a call this morning that insurance has declined proton therapy. After an immediate shock response, we got on the phone with the university, ERS, and the insurance company. ERS is the state agency that handles benefits for all state of Texas employees. Apparently insurance is bound by ERS and ERS has said that proton therapy is not covered. So, we have 2 appeals to the insurance that must be declined before ERS will get involved. However, MDA says that there is another patient who has been declined by ERS for proton therapy recently. I'm not optimistic that any of the expense will be covered.[...]