I hope all are doing well and getting through the struggles. There are definitely days where I want to just sit and cry. And sometimes I do.
A bit more of an update of where we are;
Diet is getting back on track. Thanks to the steroids Ryan has been on, it’s been a free for all cause he never feels full. So to be 100% honest, the diet has been horrible. But we are back! Well... getting there organic chicken, kale, and brown rice! Which is a diet we both were on when we were going to the gym a lot to shed weight. But turns out this is good for him as well. I have done a lot of research and BRAF positive patients do not benefit from a keto based diet. (A lot more I have to read)
Also a healthy breakfast of yogurt, fresh organic berries; (strawberries, blueberries) apples, and bananas.
Still ONLY drinking distilled water. No sodas, juices, etc.
But we do turmeric tea everyday twice a day, liquid oxygen twice a day, vitamin D, fish oil, and melatonin. All recommended by his palliative care doctor except for the liquid oxygen. I had a little birdie for that one. He also sticks to his CBD product twice a day (also helps with seizures)
We had infusion day yesterday! Which is exciting for me as a caregiver. Him being off treatment for the time being allowing his liver to repair itself was absolutely nerve racking. His enzymes were not down to perfect levels, so instead of the scheduled ipi Nivo combo, he just got a single dose of the nivolumab. He will get another in 3 weeks, and after that he will continue to get Nivo as maintenance every 4 weeks. That dose is higher than what he is getting currently. Fingers crossed his liver holds up!
We have the thermometer ready; he was getting fevers during the combo so we are expecting it again. No Tylenol though.. so have to try old school tricks to break the fever which I’m okay with
Other than that, me and Ryan have had slight arguments. I want him to listen to his body; rest, and focus on being healthy. But he wants to do things like shoot his guns, work, vacation, and live life normally and to the fullest. I want him to do that; but I am such a worry bee.. so I had to sit and think and put myself in his shoes.. he’s not a walking piece of cancer. He is a human with feelings. I have to stop treating him like he’s this sick ball of flesh. (All of that was said very harshly..) he’s the love of my life.. I just want to put him in a protective bubble. Needless to say; we are no longer arguing; and I am being understanding and supportive of what he wants to do. He wants to live. And that is what he’s going to do ❤️ I feel like I can be overbearing, it’s just my love and wanting to keep him safe.
Anyway, I’ve been ranting. I love you all; and hope to hear updates on any and all ❤️
Kelly from MD xoxo