Wednesday, August 27, 2014

Acclimmating to the new routine

So far so good with the transition back to work and school. We are all doing well with a bit more of a "normal" schedule except for our dog, Lilly. She had grown accustom to more company during the day and she is a dog who likes to have someone around. Katherine and Margaret think there is an easy solution to this problem. They are lobbying for another dog (named Rufus who is smaller than Lilly when we get her but will end up slightly larger than her - not that they have put any thought into this!). As the one with primary responsibility for feeding and health care for all dependents in our family I am not sold on this plan - I have faith that Lilly can make this transition once again this year!!

School for the girls just started last Tuesday but they have both had yearbook pictures taken, had back to school night, and are in the thick of homework/projects so summer seems like a distant memory already.

Katherine has probably had the biggest change since she started middle school. There have been some exciting positives to the year so far. She is thrilled to have a locker. She is over the moon about getting her own (school issued) iPad air. She seems to be doing well with the homework, changing classes (and clothes in PE) and all that middle school has to offer. Chad and I on the other hand, are not doing as well with the cryptic, mono-syllabic responses to most of our questions that have become her standard responses lately.

Margaret has the same 4th grade teacher that Katherine had which she is very excited about. She already has her first big school assignment due this Friday, a model of a bee. This weekend I was her able assistant while she was hot glue gunning. She kept giving me instructions on how to help using her newly learned bee anatomy. Unfortunately for her telling me to hold the thorax was not as effective as saying hold the round stryofoam ball, or the gold puff ball.

I am enjoying being back at work and getting back into the swing of things. I am still tired. By the end of last week I was wiped out - Thursdays are the killer long days. For Chad work is the same but tired wife may be the big change of late for him, but feels like ramp up of the girls activities, parent paperwork, etc. has been the more noticeable change.

I was back at the doctor on Monday for my regular every other week lab work and check. Everything is about the neutrophils were up a bit but still working to break into the normal ranges across all fronts. This past weekend I did a little work in the yard and ended up with a small patch of poison ivy on my arm on Monday. It has clearly moved into my blood stream because today it is down one side of my neck, on my stomach and both arms. I've started on steroids. Hopefully it will clear up before too long and has given me a good excuse to finish the rest of the yard clean up work with a check.

I'm back at the doctor in two weeks...

Monday, August 18, 2014

Back to work, but not totally back to normal

I started back to work last Wednesday working half days and it felt great to get back to a more normal schedule. I was really excited to be back at work. (Yes, this is what cancer/chemo do to you - they make you really excited to get back to work!)

Now I have had a few signs that I am still not totally back to normal. I just went into work for the mornings last week and it was a pretty quiet week. Wednesday felt great. I came home at lunch time and after I got something to eat, stretched out in bed to watch a webcast for work. Thursday I worked the same schedule but when I came home felt a little tired so I laid down after lunch... 3 hours later I woke up.  This was the not-totally-normal sign number one.

The next big sign came a few days later. We've gotten the girls to make dinner one night a week. Katherine had dinner Saturday. Her "easy biscuit pizza" recipe turned out to be not so easy as we made the sauce from scratch and sauteed the veggies. When Kath made the crust it was equal ratios of whole wheat and white flour (but said to be more generous on the white flour),  1 tsp of brown sugar and buttermilk. I was her sous chef and was pulling out ingredients for her. Everything was looking good until she got to the dough which was the last step before putting them together. Kath mixed up her dough and it was soupy - very not doughy. I told her keep putting in more white flour. We finally got it to form a ball and decided there must have been a typo in the recipe.

Then we tried the pizzas, they were awful. Totally inedible, disgusting, awful like we have not tasted the likes of in I don't know how long. Kath had done a good job (and had learned how to chop an onion and bell pepper, and what a clove of garlic was) and the toppings were good but the crust was disgusting. It was so sweet we could not believe it just had a tsp of sugar.  So the girls had cereal and Chad and I had salad.

The next morning Chad was making french toast and Margaret asked for powdered sugar to go on it. When I went to pull it out of the cupboard with the baking supplies I noticed the full canister of flour - which I thought we'd used the last of the night before - and realized I had given Katherine the canister of powdered sugar for her pizza crusts instead of white flour. We would NOT recommend this substitution.

Now I have been baking since I can remember and this is like forgetting and leaving the refrigerator open or leaving to go someplace without shoes for me! Clue #2 - not totally normal.

I will not go on - I am sure you will see clues of your own that I am not 100%, but am glad to be getting more back into normal activities!!

Monday, August 11, 2014

Just what the doctor ordered

We had a great week in Florida. The beach was wonderful and we had a great time seeing my sister, Molly, and her family...and it turns out that a week laying on the beach is just what I needed. My counts looked great today! My neutrophils finally popped up. They are not normal but are good enough that I can start to do a bit more. They are keeping me on all the medications until we have a trend though. The nurse practitioner at my doctor's office was so excited she was beaming as she raced through the door to the room I was in waiting to meet with her and gave me a huge hug. I think they have been saying next week it will be better for so long they were excited too for things to finally pop up.

There is still a lot I can't do (e.g., no sushi, no lunch meat, no swimming, etc.) but so much more that I can do. Excited to be feeling better and getting better! I also got the okay to start to ease back into work later this week. I am looking forward to getting back into more normal life. I will still need to take breaks and rest but ready to move to the next phase.

I don't go back to my doctor's office for 2 weeks now. It sounds like an eternity based on my frequent flier status/pace from the last several months but I am sure I will adjust.

Wednesday, August 6, 2014

What are the Odds

Chad has taking a liking to calling me his "long tail girl". No, chemo has not left me with a tail. This is a statistics joke (so very understandable if you don't think it is funny!). I have not been in the bell curve but have been out in the "tail" of the curve for...
- the type of leukemia I have disproportionately impacts men (4:1) [I'm a woman]
- median age at diagnosis is now 52 [I was 40]
- median remission duration post cladribine chemo treatment is 10 years [I got a year]

The odds of any of the items above individually is very small since the kind of leukemia I have is very rare to begin with. The odds of all the events above combined are extremely low.

Non-medically I also have a history of being in the "tail". Chad and I got married just over 18 years ago in the DC area. We knew DC in July could be  hot, but we were not planning on a hurricane. As luck, or rather lack thereof, would have it Hurricane Bertha came through on wedding day (just what every young couple dreams of). You know it is bad when your photographer is telling you "well if it stops the colors will be very saturated outside". We kept telling ourselves we will be married at the end of the day and that was all that mattered - but it was wet.

The Deacon that married us knew me well and knew Chad and I wanted the ceremony to be accessible and approachable (since I was Catholic and we were getting married in the Catholic church but Chad and many of our friends and family were not Catholic). Deacon Jake took the whole "keep it approachable" thing maybe further than we thought. He improvised during his homily. He held a poster board with the word "Bertha" on it and commented on how close Bertha was to Beth....and then he crossed out the "r" and "a" to show this. Then he went on to talk about the parallels between me an a hurricane (nice, huh!).  I was very worried about where he was going but his basic point was something along the lines of when I set my mind to something I made it happen. Then he said good luck to Chad.

Now 18 years later we are in FL on the gulf coast and there is another Hurricane Bertha coming through. We were able to walk on the beach this morning and the rest of the family swam in the pool. I realize I will be resting more here than at home because there is nothing I feel like I need to buzz and do so am putting me feet up and chillin' more than the last couple weeks. Regardless of the weather this is looking like it will be a good restful week but hoping it is my last encounter with hurricane Bertha's!!