Wednesday, August 28, 2013

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...




10 comments:

  1. So sorry you seem to have the world's most intrusive insurance company!

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    Replies
    1. First, I'm so excited because I just learned I can reply to individual comments. (Have I been living under a rock?)

      Second, I feel like a complete FOOL that I complained about my insurance. Many people don't have the luxury.

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  2. Aw Jess insurance companies are twats and know how to burst anyone's bubble! Forget all about them and move on - they are not worth bothering about - I cannot understand why they believe that is normal behaviour. Glad you got the truck sold although again another prime example of insurance companies ripping you off!

    Anyway keep lunching chicky - loving the photo lol!

    Xxo

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    Replies
    1. Ha! Thank you. For now I'll lunch, but when I make it to Scotland we have to do that tea date!

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    2. Most definitely Missy - the tea date is one we are not missing - big fat cream cakes, scones, chocolate and tea cocktails - all of course for medicinal reasons and totally fat free!

      Xxo

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  3. Oh Jess, I think you should complain to the very top of the insurance company about their tactics and behavior. That is despicable that they would call with those kinds of questions. On car insurance, I love USAA. You have to be related to someone who served in the military to get it (my dad was a marine fighter pilot in WWII and signed me up years ago)and I've found you can't beat their rates or service. You are one amazing lady - keep it up! Hugs, Debbie

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    Replies
    1. Thanks for the USAA idea (and the compliment!), I'm waiting for a quote right now...very excited!

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  4. I love love LOVE leisurely lunching with you!

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  5. Jess, this might make you giggle. My dad was working on a garage he is building behind his house and one of his neighbors came over all perplexed and said, "Hey don't you have cancer?" my dad just smiled and told the guy he was optimistic. Don't let small minds change your vision of your future, and as long as you are dreaming, dream big.

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