Hello friends! I’ve been out of the hospital for just over 2 weeks now. It’s so good to be home! I’m feeling so much better. Not quite back to normal, but close. I’ve been so thankful to be able to Christmas shop and do some “normal” things. A few weeks ago it felt like I would never feel normal again. The human body is amazing isn’t it? How it heals and gets back to “normal” or whatever normal means for me now with my situation.
Today we met with Dr. Low to discuss the “new” plan moving forward. The amazing Brandon always records the appointments so we can go back and listen if we can’t remember what he said. He transcribed part of our appointment today that I wanted to share. It explains what went so horribly wrong and landed me in the hospital for 12 days. It also explains the specialized blood test they did to check on the enzyme involved. He also said this happens in about 1% of people. I guess I’m just lucky that way!
Quoting Dr. Low: “You got a super-normal dose. Your body has a variant in its gene that breaks down the chemotherapy. The name of the gene is DPYD dihydropyrimidine dehydrogenase (referred to as DPD). You get one gene from mom and one gene from dad. Your test showed that you have one normal, (1) and one not normal, (2A). The fine print on the report said that because of this you have an elevated risk for grade 3 or 4 toxicity. Your enzyme doesn’t work as well at breaking down the Chemo so it leads to a much higher concentration of Chemo that lasts much longer. Grade 3 puts you in the hospital, grade 4 threatens your life. I’ve seen sicker patients, but you scared me. I prayed for you. I put your name on the temple roll. I was really worried about you. We got through it thankfully, but this explains a lot about why that was so, so hard on you.”
When he said he was worried, it freaked me out a little. I knew I was miserably sick, but I believe it was more serious than I thought. That was not fun and I hope I never have to repeat that again. Also…we adore Dr. Low, he truly cares and is such a good man.
He said he didn’t want to start me on more treatment until after the holidays…and then he remembered we have a family trip to Hawaii in mid January. He said that because the tumors are so slow growing that it’s not going to make a big difference if I start treatment mid January, or wait til we get home from Hawaii. He said to go have a fun vacation and we will start again the day after I get back. I’m so so so thrilled! That will give my body more time to get back to normal too. My energy is still not where it should be because of a low hemoglobin level. It’s taking its own sweet time!
It sounds like he is going to have me take the same oral chemo I was on but at a much lower dose. He is still collaborating with colleagues about it, but it sounds like maybe 1/2 the dose that I was taking. I’m pretty nervous to take anything. That’s for sure! But I know it’s necessary for me to keep fighting.
This Christmas season feels so different. Last Christmas if someone would have told me that by next Christmas I would be a cancer patient and that I’d be celebrating without my mom, I would have said “there’s no way”. I feel more grateful for my life this year, I don’t care about all the fanfare Christmas brings this year. I don’t need any gifts. I just want to be with my family and soak it all up. My heart is so broken without my mom here for our family traditions. We are carrying on as best we can but somedays it feels so hollow. I miss her immensely. There is a Christmas song by a religious artist that keeps playing in my head…”The only peace on earth I find is knowing Jesus was born and he lived and he died for broken hearts like mine” He was born and he lived and he died for all of us. And he knows every heartache, sickness, pain….everything we have ever felt. That’s pretty amazing. Because then he knows how to best comfort us. I hope my mom is near us this Christmas season. I miss you mama❤️
Merry Christmas friends! I’m thankful for every one of you. Your prayers, love and kindness’s have carried us through a really hard year. How can we pray for you? I’m so serious, we would love to know. Send me a message:)
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