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.

Sunday, December 11, 2016

My Big, Fat, Crazy Normal Life

I am loving the craziness of life returning to normal!!

The day after I got back from NIH for my barrage of testing, we went to visit my youngest sister and her family in Abu Dhabi for the week of Thanksgiving. It was wonderful cousin time, and we had tons of fun in both Dubai and Abu Dhabi with all there is to do there. It was a little insane to do a trip with a 10 hour time difference and 24 hours of travel time because of the number of connections we had to make, but we all rolled with it.

I started back to work right after Thanksgiving, but feels like I have been back much longer than two weeks in a good way. All of the normal holiday madness (e.g., baking, gifts, cards, parties) are in full swing.

Last weekend I realized how nice it was to just be home and able to help my family. Everyone was in line for something from me. Chad wanted me to preview our holiday cards before he ordered them. Margaret had literally hit a snag with a sewing project she needed some help with. Katt was baking for her teachers (all new recipes, literally all day) and she needed an extra set of hands on a few steps. Last but not least, Lilly needed a walk. It was nice to be feeling good enough to just have a normal weekend with my family needing my help on things I actually could help with.

My labs are still looking better than they have looked in 4 years. I feel good - just middle aged, and out of shape which I have come by honestly. I am still waiting on the final pathology report from my bone marrow biopsy.  The early results are not what I wanted. My blood is clear of cancer, but my bone marrow biopsy still showed some "minimal residual disease", or MRD. So since I never totally kicked it I only have to get labs every 3 months. If I had I would have had to go monthly for labs to what for when it returned. This is the one time I would have gladly had more doctor appointments!!

The nurse that gave me the news told me two people (over the last 15 years of trials) had the same thing happen and when retuned to NIH for their 6 momth post treatment bone marrow biopsy it was all gone. While I have a great track record of being in the small end of the distribution, I am not holding out hope for this. I'd rather be pleasantly surprised. I had a day, or two, of being really bummed out, but now am blocking this out. There is too much life to focus on, and I am feeling good so am going to act like I am cancer free, and hopefully I get 2+ years before another round of treatment!!

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!!

Monday, October 24, 2016

Getting Going

"Try and rest, and don't do too much. Just be mad at me tonight for all we didn't do while you were gone." These were Chad's parting words to me Friday before he left to take the girls to school and then head in to work... he knows me too well!!

I am really itching to be more active. I think my body has built in defense mechanisms and a couple days before I left the hospital I started having issues with my back. The meds for that are good at making me sleep, and I really can't lift, or even sit for that long with it. It is slowly, but surely feeling better and hopefully will feel more "normal" by end of this week.

The only other side effect, besides fatigue, I am still battling started during cycle 5. My hands were falling asleep while I was sleeping. It has been waking me up in the night, and I shake them and they fell normal again. Turns out I have carpal tunnel from the excess fluids, and edema. I thought carpal tunnel was just caused by repetitive motion. I am learning I was very wrong. The swelling has caused the central nerve that runs through your arm to your hands to be restricted.  I am heading to Walgreens today to buy splints to wear at night. I have a massage booked in a few weeks (could not get one earlier!). I am very much hoping I can resolve this non-surgically. The issue with it persisting is it can cause long term muscle atrophy, and it makes it difficult to grasp objects. Definitely need to get it addressed.

Otherwise I am crazy glad to be home and done with treatment. I have a few weeks of rest and recovery and then am back at NIH Nov 15-17 for final testing. That will be when we really know how well everything worked. This week I will hold myself back and not do too much, but looking forward to taking walks and starting to exercise next week!!