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.


Thursday, November 3, 2016

My busy season

For many people their busy seasons coincide with some big event at work (e.g., year end, a big project, etc.). For me it is the end of Oct, to early Jan when everyone in my immediate family has their birthday on top of all the holiday craziness. I get to mid-Jan and just want to take a long vacation....

With Halloween (and Chad's birthday) behind us, we have Margaret's birthday coming up plus Thanksgiving, and honestly the big dog, Christmas, is already not only showing up in stores, but also at chez withers. The girls have been making gifts for family members for months so the wrapping and staging to ship has begun.

For about a month now, half of our first floor has been taken over by crafting and gift wrapping. The guest room has been turned into the sewing room, and the official craft room in the basement has a lot of projects in flight. Regardless of the appearances of starting early, it will still be a forced march to the shipping deadline to get everything out on time!!

It is great to be home and have time to focus on my family. I am feeling good, and just working on building up my strength. I feel like my muscles are slowly waking up as a start to move from walking to jogging.

My labs looked great last week and this week. I head back to NIH week after next for final testing. I really don't expect to learn a whole lot from these tests. The big test for me will be when I go back in 6 months to see if the cancer has started to come back. In the meantime am going to back in a lot of normal activities and living!!