Monday, June 25, 2018

Missing: the fast forward and pause buttons

When the girls were little I remember people coming up to me while we were at the park, or a store, and saying "cherish these times, they go by so fast". Invariability someone said this to me on a day where I had been up since 3, or 4am, and had cleaned up multiple blow out diapers, or navigated temper tantrums, and all I could think as I nodded in response to the well intentioned stranger was time is crawling and I can't wait for the next stage!!

With the girls now rising 8 and 10th graders I know what they meant. This last year went by too fast. I feel like I want to press pause and savor the time with them. I can't believe Katt will be going away to college in three short years, and Margaret just two years after that.

The girls are teenagers and still have their moments...Katt has her learner's permit so we have been practicing driving. Overall, she is doing well but on one day of practicing parking before swim practice I had a friend text "did I just literally see Katt pulling her hair out during a driving lesson"... yes, and there were tears and a head hanging on a steering wheel in frustration and a lot of deep breathing going on in the passenger seat.  It is not all sunshine and roses, but overall, I want to soak up every moment I can with them that they want to hang out with me.

I'm taking piano lessons with Margaret's sax teacher who she adores because she really wants to share music with someone else in our family. I'm enjoying it and most of all loving how excited Margaret is after every lesson, or every time she hears me practice (which is sweet because I am just up to "Merrily We Roll Along").

In the family aspect of my life I desperately want a pause button to savor time. On the health side, I want a fast forward. I am still in a period of up and down days. On the positive side, the drugs are working against the cancer. I got bone marrow biopsy results last week and the cancer is down from 50% of my bone marrow when I started to 10%. However, they did the test because they thought the results would be <1% so somewhat disappointing.

Also, I am still on the dexamethasone roller coaster. Every time I get close to coming off of it I start to get very bad body aches, chills and fevers and I end up back on it. Steroids come with their own side effects going up and working back down off them...

I look "normal" so that is a mixed blessing as well. It can be hard having a chronic illness where you don't look sick. I am home in bed on the really bad days, and out living my life when I can.  I have a lot of days where it hurts to get out of bed and I just want to fast forward to a day where I feel better.

One frequent question these days is when will your treatment end.... unfortunately the answer to that is these drugs are ones I stay on until they become intolerable for me, or they stop working.  There are a few other treatment options but given I am only getting 12-24 months out of every protocol I have tried it is hard to stop something that's working even if it is less than ideal.  If I stop this treatment I won't have access to these drugs again until they are approved for use for my kind of cancer which may be many years, it is not an easy decision to stop.

I am trying to take life month to month at most (unless I am planning vacations which I have to have out there to look forward to!). On the good days I try to savor them, on the bad days I think about what is ahead and I do what I can to get back to a good day.