Friday, November 18, 2016

Humbled

I got an email from my parents last weekend saying congrats on winning one of the best blogs of the year. I was totally confused by this email. What were they talking about? I googled and found what they had seen. Healthline.com named my blog one of the best leukemia blogs for 2016.

I am not sure who nominated me, but thank you. I am honored, and humbled by it. I told my children I may need their help to take up my game with some editing, and the format. My usual M.O. is to write whatever is on my head with scant editing (which I am sure you have noticed). On the format,  Chad set up the blog for me the first weekend I was diagnosed 4 years ago with the bare minimum features, and we have not touched it since (which, again, you have probably noticed!).

And, yes, my children finally do know about the blog. I realized some of their cousins knew. So a few weeks ago I had some quality car time and I mentioned it. Like usual, they were non-plussed and said they knew about it. They had heard me talking to Chad about needing to do a post, etc.

I asked if they had ever read it and their reply was mom why would we, we talk to you multiple times a day, we know exactly how you are doing. I felt compelled to tell them that I also shared stories, many that included them. They shrugged with a whatever. Once again, my children prove that adults have way more baggage about things!

I finished up my final testing this week. My labs were the best they had been in 4 years.  I had very little antibodies the first 4 cycles. I had an extra 2 weeks to recover before cycle 5 and they started to increase, but were still at a level considered negative. For cycle 6, my antibodies were 98% (so I might as well have skipped that one), but my doctor was excited to see these results and was glad we had made the decision to continue treating.

Turns out once you have the antibodies, they will be in your body until you have chemo which wipes them out along with everything else. There are some people from Phase 1 of this trial that 12 years later are still in remission. I am hoping for 5+ years. We have already talked about what treatment we will do next, and the plan is a BRAF inhibitor drug regime. A few are approved, and my doctor at NIH has a couple in trial.

It will be a few weeks before I get my bone marrow biopsy results, but I am feeling good and ready to return to work after Thanksgiving. When people find out I have leukemia the standard response is "but you look so normal". I am thankful for looking and feeling normal, and I am planning on having at least 2 good years. I'll just be getting blood work checked monthly now, and will be back at NIH in 6 months for another bone marrow biopsy and MRI.

Thank you to everyone who checks my blog! I hope you find it helpful to stay in touch with how I am doing, and also for anyone newly diagnosed it gives you some insight into the ups and downs, and a patient's perspective on treatment.


5 comments:

  1. Congrats on your results, and on the blog award (well deserved).

    ReplyDelete
  2. Congrats on the award! really enjoying reading your blog

    ReplyDelete
  3. Congratulations on all fronts. Looks like things are coming around well for you and an award to boot! Let me know if you want to talk about the trip at all, whenever you want.

    ReplyDelete
  4. Hi Beth,
    just started reading your blog and would love to get in touch with you. What's the best way to contact you via email?

    Thanks

    ReplyDelete