I took yesterday off for rest and to try to get over this congestion/cough that's been getting me down. It seemed to be helpful because I slept better last night and felt so much better this morning. I also realized this morning that reorganization of the house is definitely in order. I need to get the pantry cleaned out and restocked with the right foods. I need to do the same to the fridge and freezer. I need a stool in the bathroom so I can sit while getting ready in the mornings. I also need to clean out my closet and throw out all of the clothes I don't wear (not shoes, though, NEVER shoes). In addition, we never hung the art after the remodel was finished. The flooring company is still looking for the custom rug that we didn't have an opportunity to follow up on three months ago. Let's hope it isn't lost in some warehouse somewhere! And there is so much more that we will whittle away at bit by bit. So, as you can see, settling back in is going to be so much fun! Anyone who wants to join in on the party, let us know![...]

I didn't realize moving back into the mainstream of life would be quite this difficult. The good news is that before leaving Houston I was given the green light to drive so I was able to drive the 4 1/2 hours to the Hill Country and then the 4 1/2 hours two days later to Lubbock. It was exhausting, of course, but not unbearable. It helps to have a car that virtually drives itself and, as Claudia has stated, is like driving a couch.[...]

Today we are wrapping up loose ends and getting ready to leave Houston tomorrow. I met with the trainer this morning but I was just too exhausted to work out. Instead, she helped me by measuring my body fat and scheduling some sessions for when we return later this month. With the knowledge of my percent body fat, I was able to calculate the number of grams of net carbs (30-40g) and protein (51-84g) that I can ingest each day and remain in ketosis. I can have as much fat (butter, oils, etc.) and high fat foods (avocado, cheese, eggs, fish, nuts, seeds, etc.) as I want as long as I don't exceed my limits on carbs, proteins, and simple sugars (< 10g). If you are interested in a keto diet for yourself, I encourage you to read up on the diet before jumping in. Yesterday I was laughing to Jason that I'm still buying lean meat at a time when I really need the fat to increase calories. I've eaten almost vegetarian and have followed a diet similar to Weight Watchers for so long that I'm finding it difficult to get out of those habits. Just in case you are wondering, I will not be sharing my percentage of body fat. [...]

So happy to have completed my last proton treatment this morning! Jane and Poppy came into Houston last night so they could be there this morning. Afterward we all went out to breakfast to celebrate and then Jane had to take Poppy home, I'm still not over it. Later in the day Jason and I attended our last yoga session for the couples yoga study and then I had my last blood draw until I get back on May 23rd. Huge exhale![...]

The quick trip to Lubbock was exactly that- very quick! We were so excited to engage in prom activities with Ashley, she looked amazing and we were so happy to help her feel special in the midst of the reorganization of our lives. Although both kids have been amazingly resilient in all of this, and have kept their sarcasm and humor in tact (we have no idea where this comes from), I've often worried that they have been left out as 100% of the attention has been shifted to my medical issues. Therefore, as our brain tumor vacation comes to an end this week, we will try to do some special things to celebrate and have quality family time in Houston. So far they only said they want to have a celebratory dinner with family. I'm not sure why they are not asking for something high stakes, perhaps this has been more traumatic for them than I'm anticipating. Now that I think of it, therapy may be in order...[...]

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.[...]