Day to Day

Good morning! I've got the venom routine down, now I'm fiddling with the diet. I emailed the clinic too see if their "low fat" instructions have to do with an interaction with the venom or if they are purely giving nutritional advice. If there's some sort of interaction with the venom then I'll be all about the green drinks again (Yesss!!)), but if it's just a suggestion for general health I'll stay with the restricted keto (or a version of). I have the restricted keto ingrained in me, I still check my blood glucose, and I get a visceral reaction when my glucose is above the 70's. I become very fearful that I'm feeding the tumor, and that's not good. In a way I kind of wish I never would have purchased a blood glucose monitor. It's weird to be afraid of eating a whole apple. On the RKD you can have apple, but just a little bit and you have to eat it with some fat to keep the ratio.  It's complicated. I love the benefits that are shown with the RKD but I dislike the reality of the lifestyle.

On a very positive note, Dan sold our truck! We now have October's immunotherapy shot paid for. Yay! You know what ISN'T fun? You get penalized by your insurance when you only have one car. It's a good business model for the insurance companies because they want families to have all of their cars with the same company, but if you are a one car family you get zero discounts (unless you guys know of any companies that support single car families...please let me know), and you pay much more for the same service. Ugh.

Man. Dang it. Just got interrupted by a phone call from my health insurance. Somehow they think they need to call me every few weeks to ensure that I have end of life directives, and they want to assess if I will need hospice soon. If that's not depressing, and terrifying, I don't know what is. I got a little upset and told them that I would call THEM if things got worse, or maybe they would notice from my claims that I was clearly having problems when that time comes. I don't need an effing reminder of what I'm going through, or what they're expecting to have happen. It makes it hard to stay positive. I've had a few conversations with friends about my confusion over the term "cancer", or the concept of being "sick". It's weird because I feel pretty great, but clearly I'm not normal, or technically healthy either. That's why I'm doing all of these treatments. That's why my life revolves around research, supplements, immunotherapy shots, diet, and now the venom. I'm healthy, but at the same time I'm stuck in this fog of responsibility, always oscillating between fear, hope, reality, and dreams.

As I have MRIs every three months, and shots in NYC every two months, and supplements four times a day, and now eight applications of venom a day, it can be very overwhelming, and although I feel physically well, my life does not feel "normal" by any means. I'm stuck in these tiny bubbles, always one moment to the next, one day at a time, and don't get me wrong, I love it. I LOVE being alive! But we can't ever plan for a trip, for an actual wedding or wedding celebration, or a holiday, or anything long term like having children. That fact doesn't normally bother me because I'm literally living in the moment, but when I'm slapped with a phone call from the nurses of my insurance company, it all comes crashing back to my consciousness. One day leads into another day, and before you know it it's been over three years of a diagnosis, of doctor's appointments, of MRIs, of brain surgeries, of traveling for new and better care, researching and researching and researching. I love my life, and I'm very happy, but it is also scary sometimes to think that this could be my life up until the end, just day to day. Each three month span brings with it the fear of recurrence and thus more significant treatments like chemo or radiation. I've already dodged the radiation bullet once by saying no thank you, but there is always a lingering fear of a time when I may be so desperate that I'll acquiesce.

On days like today, all I can do is find something that makes me laugh, and this is it, a picture of Jules and I a few days ago being ladies who lunch. Keeping it classy...