I haven't posted in a couple of days, mostly because I've been so exhausted. Jane and Kim have agreed to be my training coaches for the 2016 napping competition so I agreed to practice as much as possible. I did awake early to go to my last proton treatment of the week and came straight home to go back to sleep. I even canceled the gym, I was just spent for the week. My biggest challenge this week has been my food struggle. Never in my life have I had trouble getting enough calories into my body. It takes forever to eat when you are just not hungry and nothing tastes good. I don't even understand this. I love food! Someday soon I will be off of chemo temporarily and hopefully I will get my appetite back. This is my next major goal, to be hungry someday![...]

This is Jason doing the writing, not Jane. I am hijacking to deliver potentially, tentatively, cautiously optimistically, VERY good news!

Shannon got a call from the MDA Proton Center denial of claims coordinator. If I understood this right from Shannon (and she may want to clarify), after rejecting us a 2nd time on Friday, United Healthcare took it upon themselves to forward the case on to the third level of review. The third review, as now required by "Obamacare" has to be an 'external' agency. In this case, United apparently has arranged to use ERS, the organization who hires them to run our insurance program as the 'external' reviewer. In public accounting, that would be called 'self-review threat', and would be easily recognized as unethical, but I digress. In any case, apparently when the third review was sent, it was quickly turned around with a response to pay for proton therapy! The MDA lady said that she was called by the insurance company and that they had caved! We have NO IDEA yet what caused that effect. Shannon has written to ERS Board members, and that may be the cause. It could be that they liked our appeal letter, and found Shannon's financial argument persuasive. Who knows!? (UPDATE: I just received a call from John Frullo, our Texas Representative for District 84, followed by one from his staff person Robin. This issue has been explored by them, as he chairs the House insurance committee (if I understood correctly). They have been looking into the quality of care received by Texas employees. He called to say that we can expect some good news from United Healthcare. Robin explained that they have been following the blog for a month or so. So, THANK YOU JOHN (and PATTY)! This is just incredibly helpful!)[...]

This is Jason doing the writing, not Jane. I am hijacking to deliver potentially, tentatively, cautiously optimistically, VERY good news!

Shannon got a call from the MDA Proton Center denial of claims coordinator. If I understood this right from Shannon (and she may want to clarify), after rejecting us a 2nd time on Friday, United Healthcare took it upon themselves to forward the case on to the third level of review. The third review, as now required by "Obamacare" has to be an 'external' agency. In this case, United apparently has arranged to use ERS, the organization who hires them to run our insurance program as the 'external' reviewer. In public accounting, that would be called 'self-review threat', and would be easily recognized as unethical, but I digress. In any case, apparently when the third review was sent, it was quickly turned around with a response to pay for proton therapy! The MDA lady said that she was called by the insurance company and that they had caved! We have NO IDEA yet what caused that effect. Shannon has written to ERS Board members, and that may be the cause. It could be that they liked our appeal letter, and found Shannon's financial argument persuasive. Who knows!? (UPDATE: I just received a call from John Frullo, our Texas Representative for District 84, followed by one from his staff person Robin. This issue has been explored by them, as he chairs the House insurance committee (if I understood correctly). They have been looking into the quality of care received by Texas employees. He called to say that we can expect some good news from United Healthcare. Robin explained that they have been following the blog for a month or so. So, THANK YOU PATTY and JOHN! This is just incredibly helpful!)[...]

This is Jason doing the writing, not Jane. I am hijacking to deliver potentially, tentatively, cautiously optimistically, VERY good news!

Shannon got a call from the MDA Proton Center denial of claims coordinator. If I understood this right from Shannon (and she may want to clarify), after rejecting us a 2nd time on Friday, United Healthcare took it upon themselves to forward the case on to the third level of review. The third review, as now required by "Obamacare" has to be an 'external' agency. In this case, United apparently has arranged to use ERS, the organization who hires them to run our insurance program as the 'external' reviewer. In public accounting, that would be called 'self-review threat', and would be easily recognized as unethical, but I digress. In any case, apparently when the third review was sent, it was quickly turned around with a response to pay for proton therapy! The MDA lady said that she was called by the insurance company and that they had caved! We have NO IDEA yet what caused that effect. Shannon has written to ERS Board members, and that may be the cause. It could be that they liked our appeal letter, and found Shannon's financial argument persuasive. Who knows!?[...]

There are milestones in life that have a profound affect on your body, times and events that make you have to relearn how your body works. Everyone has their life events, some develop bad joints, some hurt their backs, some develop autoimmune disorders. For me there have been few of these milestones. When I got close to 30 I had to start stretching before I could go on a run. After I gave birth to Aidan it took three years to feel my stomach again from the c-section and I have yet to understand my abdominal muscles and why I can't have a six pack, no matter how many sit ups I do. After all, Kelly Ripa has a six pack and she has how many kids? After moving to Lubbock I had to relearn how to treat my skin because I'd never been so dry in my life. After 40 I had to relearn the relationship between eating and working out, as my metabolism changed profoundly. Although annoying things we all complain about in passing, these are all relatively normal changes that occur and require us to shift our understanding of our bodies.[...]

When I first found out about Shannon's brain tumor, I was shocked and scared.  Finding out that one of my oldest and dearest friends is sick was quite unsettling.  I am eternally grateful to my/our other best friend, Jane, and my husband, Buddy, for the conversations we've had to allow me (and all of us) to process through the many emotions surrounding Shannon's diagnosis and treatment.[...]

It's 9 AM and we've already had a full Monday! We were at proton therapy at 6:30, today was my last 6:30 appointment. The rest are all at 7 AM. Only 7 proton sessions left for at least a while and maybe forever. This became very real when I filled my 7 day pill box (my advent calendar, as I prefer to call it) last night and only had 3 of each chemo pill left over. At first I thought it I'd miscounted somewhere but then I realized that the advent calendar is filled from now until next Sunday and then there are only 3 days left and chemo stops the same day as the proton! So it really is an advent calendar- it stops on Proton Christmas![...]

Although I was quite frustrated yesterday, it turns out all I needed was a little rest, food, attention from my husband, and an opportunity to vent. This morning I awoke fresh and ready to greet whatever comes next. So glad today is Saturday, I got to sleep in a little, do some reading, have a big breakfast, text some friends, and shower at 2:00 PM. Everyone needs a little downtime once in a while. Although MD Anderson is a wonderful place, they keep us very busy. It's as if they think our entire purpose for being in Houston is to take care of my cancer or something. Don't they know that they are constantly interrupting our brain tumor vacation? [...]

I'm so glad today is Friday. Last proton treatment until Monday. Last yoga session until a week from Monday. No gym today or for the next few days until Tuesday. All I have to do is relax, engage in some at home yoga, meal planning, and help Jason get ready to go to Lubbock for the week. I love my family but I think it will do them (and me) some good to get home for a few days. There's lots that needs to be done there. Jason will get back into the office and Aidan will be able to go back to school for a week to see all of his friends. Jason has been working from here as much as possible and taking sick/vacation on days he's helping me. Aidan has been doing as much work as possible for the last several weeks. Although there has been a lot of joking about this being the "brain tumor vacation," that's just been us trying to make the very best out of a terrible situation. If we lose our senses of humor we lose this battle for ourselves, but also for our children who are depending on us to set the emotional stage. It may not be how others would handle it, but it's how we are handling it. There will be no laying on the floor crying in this family-- we just don't do things that way! We stand up, we pull ourselves together, and we laugh about anything we find to laugh about-- especially inappropriate things. And quite frankly, I really don't care who criticizes us for it.[...]

As I sit here writing this post, I am enjoying watching the rain through the third story windows. If it's going to be wet, I may as well enjoy it from a dry spot. The good news is that with all of this humidity, my skin is far from dry. Right after surgery I was having serious dry skin issues so I increased my water intake. Now the humidity and water consumption have come together for some real benefits to skin, nails, and hair. My body may go into shock when it hits Lubbock. I wonder if I'll be able to feel the shrivel of my organs as I approach.[...]