Wednesday, August 23, 2017

Where to start...

I have to start with what is most top of mind which is our family state of emergency last night.

For most of the night, yesterday was a normal school day evening. We had a nice family dinner. Everyone was quietly working on homework. The dog had been walked, laundry was done. Margaret was up in her room and Katt finished her homework and was heading upstairs around 8:30 when I heard her yell, "Mom, there is a bat in our house". 

I did not think I heard her correctly, or that she could be telling me so calmly that there was a bat IN MY HOUSE!!  Then it came flying down the stairs at me. I ducked and it went into the living room. OMG ---  there was a bat in the house. Chad was on a work call. I grab a broom, because I think I remember someone telling me they had shoo'ed a bat out of their house with a broom before. 

I quickly realized I needed help. I called to the girls to tell their dad he needed to get off his call we needed his help. At the same time, I knew Chad had no experience with a bat in a house from my past 20+ years of co-habiting with him so I called my neighbor who always knows what to do. 

Sure enough my neighbor had great advice - call Animal Control. I googled quickly, and put my tax dollars to work and made the call to the after hours number (which is now in my phone for quick reference). Then my attention turned to containing the bat. All I could think about was what if they get here and can't find it! 

We have an old house with high ceilings and pocket doors (that before last night we did not think we could close, but turns out in a pinch we can get them to work).  The bat would circle and then land somewhere we never figured out where. Luckily when the nice young woman from Animal Control arrived it was flying and she caught it in her net in about 30 seconds. She said it has been a record year for bat activity.... apparently we are in bat mating season now. They start to hibernate again in Oct/Nov, and we are counting down the days!!

This is the big excitement from my last few months. I took a personal leave of absence off work this summer to hang with the girls and to spend more time with my parents. It was a very full, and wonderful summer - lots of time at the pool, crafting, and hanging with family. The girls started school last week, and I head back to work Monday. 

For the last several months living with leukemia has just being "living". I did go back to NIH in May and my bone marrow biopsy showed the cancer was up from <1% in Nov to 20% in May. I was very disappointed by the results, but my doctor did not think they were too bad. I had blood work done last week and it was very mediocre so I am just focusing on getting the most out of every day.

I have a true"love - hate" relationship with follow-up testing. I like getting the data to know how I am doing but also dread what it may tell me. The anxiety that surrounds any type of testing is different once you have cancer because you have already had something rare, your brain can really create some elaborate scenarios based on some minor symptoms you notice.

I would expect I will continue to be horrific at doing posts as long as I am feeling good. End of November is my next big testing trip to NIH so hopefully will just have more life (but with less bats!!!) over the next few months.

Sunday, March 19, 2017

Take silence as things are going well

I have had a few friends email, or text, to see how things and mention I had not posted in awhile and it has been longer than I even thought it was. I continue to stay busy packing in as much living as I can. I do think when I am feeling good it is hard to make myself post. It really reminds me that I have leukemia which most days is sublimated below the rest of what is going on in my life.

While I am totally comfortable talking about having cancer, I do sometimes wonder if I have totally accepted it. I just looked up acceptance and it means you consent to receive something, I have never consented to have cancer. I understand the reality of my situation, but I don't like it, and it is most certainly not something I wanted. When I talk to friends who are newly diagnosed and struggling with the news, I know I am reconciled to the facts about having leukemia and what it means for my life and my families. Maybe that is as much as you can hope for....

I don't go back to NIH until the end of May for a couple days for lots of testing. In a weird way, I am looking forward to going to NIH. This is a long stretch for me without data. I am starting to second guess being tired and wondering if it is more than the impact of full days, and the measly one hour daylight savings change which threw my whole family off last week.

The last 4 months have been full of the girls activities, work, and lots of family travel. I used the time I had in a hospital bed last summer, and packed our schedule for every school holiday. It is the last year the girls are in the same school, and with Katt going into high school we know she can't miss school, or sports practices on the weekends. It hit a new travel crazy high for us a few weeks ago when Chad and Margaret were coming back from a father-daughter weekend and they came off the plane that I was getting on to head out of town. We had time for quick hugs and kisses, and a hand off of keys. We are looking forward to heading to the Grand Canyon and other national parks later this spring and hopefully in May I will get the news everything is still looking good and we can squeeze in some trips this summer before high school kicks off and then we know college visits will not be too far behind.

Sunday, January 22, 2017

Recos for a bad weather day

First, sorry I have been terrible about posting! Life has been too busy, but I have been bad even for me. Life is still blissfully normal, and just full of work, school and the girls activities. When people ask me how I feel my response is usually great, except for feeling very middle aged and out of shape! The whole getting back shape thing after 6 months of not being able to move enough to sweat has not been as easy, or fast, as I would like.

Since we are at the time of the year when most people I know end up with some days where the weather keeps you inside and you are looking for a good book to read, or a show to watch I thought I'd share some of my favs from the last several months with you. With all the forced lying down time I had I should have gotten bored. However, I was sorely behind on TV and books from the last 15 years so thanks to the NIH library, Netflix, Hulu and Amazon Prime my days were full.

I'll start with books....
- Today Will Be Different, by Maria Semple -- as a middle aged mom I am clearly in the target market for this book and thought it was laugh out loud funny. It is a light, but fun read about a mom who decides she will make just this one day different, but life has other plans for her.
- Being Mortal, by Atul Gawande -- I thought this was a very well written book on aging and dying, and how to help those around you dealing with these issues. The key takeaways to me, were to ask people close to you who are aging/dying what their goals are, and what they are most afraid of and go from there. The other key takeaway was that most of healthcare expenses in the US are driven by people in the last few weeks of life since we focus on extending life. Gawande raises a great point, that we also need to help people recognize when they are at the very end of life and support them to die with dignity, and help them get home with family.
- Modern Romance, by Aziz Ansari --  I read several books by popular comedians and this one came out on top. The others were funny, but they felt like the same tone in every chapter just a slightly different topic. Ansari partnered with a sociologist to study dating and the influence of texting, social media, etc. and thought it was very interesting and made me glad I am not in the dating market!
- Six of Crows, by Leigh Bardugo - This one is Teen Fiction (one of my favorite genres of late), and is terrific. It is about children who have had to fend for themselves, They all have developed special powers, and they come together for a special mission.
- Miss Peregrine's Home for Peculiar Children, by Ransom Riggs - Another Teen Fiction, most have probably heard about it from the movie... worth a read, too.

On TV shows, first you need to let me know how much time you have... If you have cancer patient levels of time, then try Good Wife, or Nurse Jackie. If you have more normal levels my favorites are:
- Comedy - Superstore, The Grinder, The Good Place
- SciFi/Mystery - Stranger Things, Extant, The Bridge (in Swedish with English subtitles)
- Drama - Game of Thrones, Mozart in the Jungle

Thank you to everyone who gave me great recommendations!! I still have more on both fronts I have not gotten to... will save them for my next long flight, or round #4 of treatment.