Thursday, July 7, 2016

Reluctant Beth Returns

I think I have mentioned before, my family (especially the girls) insisted that I needed new games on my iPad before I came to NIH the first time. They knew I was not overly excited about the new additions to my iPad so I was dubbed "Reluctant Beth" on our cloud.

Now I feel like "Reluctant Beth" coming back to NIH. It is nice to know what to expect, where to go and to know the nurses. However, it is getting harder for everyone in our family for me to be gone this long every month, and harder to leave.

Margaret is having trouble with anxiety when Chad, or I, are not around (and sometimes when we are around). The girls are fighting more, and there was a big one Friday morning. We were in the kitchen having breakfast, and then at some point Katt started yelling about how she was tired of picking up Margaret's slack while I was out of town. Not to be out yelled, Margaret started screaming back that she was tired of having to do things on her own 2 years before Katt had to.

After about 20 minutes, everyone was yelled out and sent to their respective corners to cool off. There was some truth in what they both had to say. When everyone had calmed down we talked through a solution. We'll know in a few weeks if it worked! This round there is just one more "free day" for the girls then they have plans to meet up with family and friends the rest of the time I am at NIH and will hopefully they will be busy enough time will go by quickly for them.

We ended up having a nice  rest of the day Friday. We ran some errands, played mini golf and got pedicures. We also had a very nice (albeit) rainy 4th of July weekend in St. Louis. It was great to see Chad's family and have a weekend away. We look forward to going back when there are not torrential downpours every day!!

I finished up Day 1 of treatment earlier today. So far so good, but it is so NOT exciting to be back here. I feel like I am slugging through it and will just be counting down the days. At least my lab results are solid and my doctor says they are good at this stage. Last round there was still cancer in my blood and they are hoping that post this round they will have beaten it back enough that it will not be circulating in my blood, and will just be in my marrow.

It definitely looks like I am responding to treatment which is good, but also the result I got the last 2 times. I got complete remissions, just not durable ones. I asked my doctor yesterday when we would know if my remission would last longer and the answer I got is it is too early to tell.

Yesterday and today I have taken to the halls to pace through NIH. I asked whether there was a Physical Therapist on the team I could talk to about and exercise regime that was compatible with this drug, and procotol. I was told they would let me get back in shape post treatment, but for now I needed keep my feet up and restrict exercise to strolling. This part if very hard for me!

So if you come across another blog that talks about a lady in black yoga pants and T-shirts aimlessly roaming the halls of NIH that is me!! I am reluctantly here, walking the halls, and yes, playing the occasional video game!!!

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