Sunday, July 7, 2013

End of Round 1 Week 2...

Tomorrow is the beginning of the mythical Week 3 - the week when I am supposed to be feeling better,  when I am supposed to feel so well that I am feel ready for chemo Round 2!  I have lukewarm feelings about this.  While I feel well, and everyday I thank my lucky stars for  the minimal side effects I've actually had, this is still really difficult.  I have started to understand where all the "conserve your energy" advice came from!

Throughout the years, my perspective on being tired/fatigue has changed.   I've had to some shift work in my career, and I used to think that switching between night, evening, and day shift - especially when leaving work in the middle of the day to force myself to sleep and come in later - meant that I knew a bit about being mentally and physically exhausted.  That changed changed when I had my daughter, and I realized that the tiredness of not sleeping due to a crying child was worse than any I had ever experienced just by messing up my sleep cycle.  Well, chemo has taught me that there is an even higher level of tiredness, and it is very difficult to explain.  One minute I feel fine, and suddenly I feel as though a wave of fatigue washes over me - and I have to quit whatever I am doing.

For a while now, I have been telling myself that the next day would be the the day that I would feel "normal" and be able to do the 10 million things I keep thinking I want to do.  It has taken me a week to realize that I am now at a "one outing/visit per day" activity level.  I have still been able to see some friends and visiting family and enjoy myself - but I feel like I haven't been able to interact as much as I would like, and I definitely feel very tired quickly.

The good news is, that I am also learning to conserve my energy, and to do things to prevent/counteract the unpleasant side effects I've been having.  I've been getting crazy back spasms, worse at night, that have been making it really tough to sleep, and I still haven't recovered fully enough from my chest surgery to sleep lying down.  So, my husband did some research and got me this awesome recliner chair for people with back issues (yes, I am an old lady with a recliner, don't judge).  It is SOO comfortable, I might have to tell my friends to come over instead of trying to go out to restaurants - between the chair and the heating pad for the back, I can really relax!  And no worries, I'm not becoming a couch potato or staying in place for too long.  I'm trying to move around, stretch, walk or dance a little with my daughter when I can.

This is sounding like a depressing post, but every day we have good news - even if they are baby steps.  For example, I just realized my mouth doesn't hurt as much today - I don't need to avoid toast tomorrow morning!  I also came up with a great idea on how to spend my time.  I have been reading a lot, but not exactly literature that will make a better Joelle.   My mother-in-law had suggested, and I thought she was joking, that I figure out the things I had always wanted to do and schedule those into week 3.  It seemed eerily like a bucket list, but it got me thinking...

For some time, I have wished that I had learned to play an instrument when I was younger.  Not that I ever considered it growing up, but when I got to college I realized I had missed out on the art of reading and playing music.  I have been doing some research, and have decided I want to learn to play the piano.  I LOVE the sound of piano music, and the music I listen to when trying to relax (which I've been having to do a lot of when trying to lower my heart rate lately!).  I'm starting by learning to read sheet music. I have been amazed at all the good information to be found online (and the great teaching videos on youtube).  Three days ago I didn't know the symbol for treble or bass, now I'm practicing at reading notes quickly and determining where on the piano they would go (with an ipad app, of course).  I will be checking in with my musically inclined friends for suggestions on local music store - I want to get a compact piano keyboard that I will be able to plug into my computer while learning (there's not really space for a free-standing piano in my house).

In other news, I have a checkup with my oncologist tomorrow, mostly to check my blood counts and make sure they are within the normal/healthy range.  Hopefully, I will have good news to report!


  1. GREAT decision on the piano!!! I've always thought it's the first instrument I'll be teaching my kids, since it has the clearest visual representation of musical notes, which makes it a great first instrument. If you can find a small keyboard (at least 3 registries: that you can take with you comfortably to bed or your recliner, you can spend more time on it, and it'll be easier to share with Sara. Plus it'll be fun to use the different instrument settings with her, so she begins to learn what guitars/harps/flutes sound like. Hope you both enjoy it. Feel better soon— GO WEEK 3!!!!

  2. Joelle, it's not a depressing post; it's reality. You started this blog to share your story, and that's a story that's going to have some highs and lows. You are just learning the ropes on this battle. It helps all of us to know what you're going through so that we can think about what we can do to help.

    The piano is an awesome idea and something that you'll be able to share with your daughter long after you treatments are done.

    Keep up the good fight. Get lots of rest and know that we are thinking about you and praying for smooth waters. Much love, ~T

  3. What a great idea, Joelle. Abuela Diana would be so proud of you.
    She tried to teach me many years ago...but "life" got in the way.
    It is definitely something I'd like to learn some day.
    A keyboard sounds like a great idea. It is definitely a time to do
    things just for the pleasure and joy they bring. Best recipe for healing..I have ever found.
    Titi Rina

  4. Joelle, just a note to tell you you are amazing. Meditation is great to lower your heart rate, now is going to be easier with your new recliner. Thanks for keeping us informed. Looking forward to your first piano concert! Woohoo

  5. I suggest that you listen to Tete Montoliu, Michel Camilo, Jacques Loussier, Bill Evans and Bill Charlap. Those are my favorite pianists. I'd add Diana Krall if in the mood for vocals. Jorge and I both agree that her Live in Paris album is one of the best CDs

  6. Querida Joelle: Nos enteramos por tu Mama de tu padecimiento hoy y nos dio la direccion de tu blog. Lo acabamos de leer y te admiramos por la humildad, Valentia Fortaleza y Madurez con que estas confrontando este gran reto. Te seguiremos con nuestras oraciones, bendiciones y mejores deseos de que esto lo superes pronto. Vamos a ti! Cristina y Ernesto Melendez

  7. I don't know which part I loved the most: The couch or the piano. I'll have to settle with both. This is AWESOME!!!! Play away! <3

  8. Joelle, I read your entire blog after finding out about what you are going through and you are so inspiring by the way you are handling and conquering the obstacles and sharing the story for others to learn and understand how you are feeling throughout the healing process. Heartbreaking for you and Gabriel to have to explain to your baby girl how you can't hold her as much as you used to. Piano seems like a fantastic hobby to start - imagine - all the healing properties music has and you're creating it for yourself! Prayers are with you, ~Rita~


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31 year old navigating life with husband and almost-2-years-old daughter :)