Saturday, December 4, 2010

December 3: First Day...


Well, the alien got the best of me today!  After dropping Ali off at Joanie's (flowers are from Joanie's garden), I got on my mind on the idea that I always consider going biking or running.  Well, I say always as in the past week and a half!  LOL.  There is a beautiful regional park nearby our home called Peters Canyon.  People jog, hike, mountain bike, and horseback ride there.  Usually, I ride my bike through the canyon, and just run around our neighborhood.  There are some pretty steep hills in the canyon... too steep for my amateur biking chops, so I usually steer clear of them, particularly recently as I am in some pretty poor shape right now.  But, I am skiing Durango Mountain at Purgatory in exactly 20 days, so I really need to challenge my legs and lungs so that I am able to hang and actually get some decent skiing in!  So, I thought a little outside the box today.  I hit the flat trails on my bike and made my way up to one of the hill tops and left my bike there and jogged the hills down, then up, then down the other side, up to the next ridge, and back down again.  Man, that worked just fine!

Then, there is this other 'peak' that I have never hit because it is way to steep for my bike skillz... so... I left my bike at the base and hiked it.  I can see this peak from the freeway nearby, and have always said... someday... I'm gonna climb that hill!  Well, today was that day... after the other hills no less!  I am really happy I did.  It was a little bit of a stretch, but I think hiking and mountain biking is a really good fit for me because it is so engaging.  My brain is so engaged from the wind, the sky, the different plant and animal life (I saw a butterfly, a roadrunner, 2 squirrels, and tons of birds) and the constant changing terrain that I find I can exercise a lot longer outside than on a treadmill or bike or stairclimber.  Also, with hill climbing, when I get to the top, I get the instant satisfaction and gratification of the view!

That was the high point of the day for me. The rest of the day was tough.  It was my first day back to work as a music therapist at  UC Irvine Medical Center in their oncology dept.  I was also scheduled to work the winter Grief & Loss Retreat at the Casa (where we had the AZ EB Gathering), but I am in NO position to facilitate that group at this time in my own grief journey.  Here's the thing, as the numbness is wearing off, it's getting more and more painful each passing day, week, and month.  November was harder to handle than October, and this week heading into December has been harder and more painful than November.  It's not even the holiday stuff, either.  Yeah, it turns it up a little I guess, but I am feeling more now, and it is painful and exhausting.  It's like the pain saps my energy.

Anyway, I went to work, and before beginning I stopped in the cafeteria to get lunch.  It took me just about an hour (and a giant mug of coffee) to get up the courage to go up to my unit.  The first patient was 3 years younger than me and she had a newborn at home.  The second patient was undergoing chemo and was receiving red blood cells.  I recognized that bag on her IV pole immediately.  I was immediately back in Bella's room for an instant.  FLASH.

It was like yesterday morning when I was at the dentist for a long over due check up.  As I lay there in the chair, the suction goes in my mouth and the sounds... FLASH... back in Bella's room wrestling with her to try to suck out all the mucous and spit during her bout with mucositis.  When the doc asks me to close my mouth around the sucker, it sounds EXACTLY like when I would find a pocket of phlegm hiding in her cheeks.  My heart and my brain ache just writing about this.  Ugh.

I had a blast with both patients I saw today.  Only 2 of my 6 referrals were either still admitted or wanted music therapy, so I took my time with each and really just allowed them to drive the experience however they wanted.  I do that usually anyway, but today there was muuuuch more freedom from me.  It is very funny being on an adult unit after spending 4 months on a peds unit this summer and fall.  Adults are so funny as patients!  I'm not sure which job requires more patience... a peds doc dealing with parents and the patient, or adult docs dealing with adult patients!

One thing I struggled with today was that in both rooms either the patient or a family member asked me if I had any kids, and if so how many and how old.  I shared about this once before, that now I say I have two kids, and if pushed, I say one is here on earth and one is in heaven.  I really didn't want to say that today, but I didn't know how else to do it at the time, and it made one of the patients understandably upset (the new mom with the 4 week old at home).  So, my new plan is just to say 2 kids and then quickly move the conversation back to them as soon as possible while not seeming secretive.  There is a difference between secrecy and privacy.

Ironic, coming from a guy who writes every thought he has on the internet. right?

But seriously, it's for the patient's best for me to keep the focus on them.  I had a nurse one disclose to me her personal life issues, and it was frankly weird and unprofessional.  It is one thing if you have worked with the same patient for a while, but in a first shift or music therapy session, it's not too hot to having it be all about you!  LOL.

Also, I used to take it so personally when someone didn't want music therapy.  I used to think it was my fault for not explaining it clear enough.  So arrogant.  Uh, Tim, it may have NOTHING to do with you whatsoever!  I remember sending people out of Bella's room if I wasn't in the mood to deal with them... and it was about me, the parent, not them the whatever service they were.  Today, the first person who said no, I got a little ruffled, but then I remembered I was on that side of the coin not too long ago, and no, not every waking moment was an open door for someone to come in, regardless of the intent.  Again, it was never about them as self or ego.  It just wasn't right for us.

It reminds me of The Four Agreements:  Rule number 1:  Don't take things personally!

God night.


  1. It was great to hear about your experiences providing music therapy in today's post. The insight you've gained by being on the "other side," as a member of the patient's family, for all those months is truly another one of Bella's blessings.

    Angela in Dublin, Ohio

  2. I am one who tends to take everything personally, but I don't expect everyone to take every single thing I do personally. I think I need to get this Four Agreements book.
    I keep trying to write that I am sorry you are feeling so much more pain these days... but it just doesn't seem right. My heart knows what I wish to say but I just can't articulate it into words. I know the pain you feel over her loss is normal, but I wish I just had some magic words that would make you feel better.
    I do understand what you mean about secrecy vs. privacy. I have a situation like this. I do not tell (all) people the truth about a situation in my own family. In fact, I have not even shared wit most of my extended family. I consider it private. I HAVE mentioned it to people and then wished I had just kept it to myself. I chose after a few of those encounters to keep my stuff private.
    I hope you have a wonderful day.


  3. Sweet Bella's all knowing eyes - just love those eyes!

    Joni's roses are just beyong beautiful! I may need to ask for some pics to scrapbook them!

    Awesome for you to do those workouts - I seriously need to exercise! Also happy for you to be back at working and sharing your talents and gifts! Many people will benefit from your perspective on life through your words and through your music!


  4. Seriously..Ali looks like a teenager!
    Glad you "climbed every mountain"...wish I had that drive in the morning.
    I'm glad you're daring your talent with patients who need you...your first patient is so proud of you ;)

  5. Well done to all that excersise!!! The pictures are beautiful. It's so nice where you live ... The roses and your two flowers,Ali and Bella are incredible.
    I imagine how tough is to work in a hospital after all what you went through...
    Hope you have a nice and relaxing weekend.

  6. I loved hearing about work yesterday. I do agree about the sharing, but in a way I disagree. Here is my opinion- I used to work with patients in the hospital too, and it was not an oncology unit, however, there were sick people. I would NEVER just start telling someone about my life in that situation, but I would share if they asked, like you do. But I really think that if you did indulge a bit more, it might be good for them. Maybe good for them to think about someone other than themselves. What I mean is that they are most likely sitting in their rooms all day thinking about themselves and feeling sorry for themselves. So hearing someone else's story might take some of that away??? I don't know... of course, it seems like you are not ready to share because it is too painful right now, just being there is HUGE. But I think it depends on the situation, and the patient.

    Anyway, I have been thinking about you guys so much lately. I have a song that I wanted you to hear. I will email it to you. Also, yesterday I brought up Bella's story in a meeting with some med students and I said "Have you ever heard of EB?" And they responded... "HAVE WE??? Thats all we have been talking about for the past 2 weeks! In EVERY CLASS!" I was so excited to hear that! Of course its the U of M and they know about the research going on right now... so I told them about Bella and how she was part of the program, etc.... anyway I just thought it was cool that they are learning a lot about it right now.

    And, in case you didn't get my email before, I'm in. $1,000.

    I also had a pain today as I was looking through my pictures and saw the pictures from when I visited Bella. I wish she was here. And I really think that Corynn resembles Bella in a lot of those precious pictures you are posting and they are so sweet.

    Much LOVE. We miss you guys!

  7. So glad to hear you had a great time hiking and riding your bike today. Man, you motivate me to get off the couch and move!! Sounds like you had a beautiful morning.

    That's awesome that you got to spend a lot of time with your 2 patients today. I bet they really enjoyed it. What do you do when you do music therapy? Do you play your guitar for them and sing, or just play? Do you play all of your own music or do you play requests? I'm sorry, I just don't know how music therapy works and I'm very intersted. I know my sister would definitely be interested in that and hopefully she doesn't end up in the hospital but if she does, I'd like to understand how music therapy could help her. She LOVES music.

    That is so sad about the young mother. I read about another young mother in NY who while pregnant was diagnosed with Leukemia and right after the baby was born she had to begin chemo and other treatments and she hasn't even been able to see her daughter except a few times. She is in NY getting her treatments but her baby is all the way in WA with the grandparents and her husband writes a blog to keep everyone up to date with everything. It's a tough situation.

    I love the pics of Ali. She looks so sassy!! And of course Bella is as beautiful as always. Love those eyes.

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(11 mos.)
    The McLaughlin Family
    Moreno Valley, CA

  8. Heaveno! Sorry for not posting the last couple of days - I've been having computer issues and have been running all over the world (or so it would seem!)

    Anyway, good for you on the biking/running! It looks like you have some beautiful ground out there to cover! I'm so sorry you're having a harder time these days. Will keep praying for you to have comfort and peace - especially as you're back at work and trying to minister to your patients!

    Love to Ang and Ali too (that girl is so pretty!!) And that Bella - I will never get tired of those beautiful eyes!!

    Love from TX,
    Laura (for the Team)

  9. I am rooting for your alien....exercise--especially that done out in nature--is therapy. Keep it up!

  10. Tim,

    Do what's most comfortable (or least painful) for YOU when asked by a patient -- or anyone -- about your children.

    Be as kind to yourself as possible.

  11. Peters Canyon is awesome!!! That is our favorite hike! We always start the trail to the right, that then leads us to the 3 inclines...AND then, the incline that kills me, is the one you can see along my mom & I have to walk it up backwards! LOL It is a beautiful hike!
    Talk about taking things personal...
    I use to be so super sensitive and take every personal- as if every situation was directed towards me. Over the years I have develope some thick skin...I have worked with some vicious people, who I didn't admire while working with them. However, I look back now with a smile on my face and THANK them for being the way they were/are. Because of them, I don't take things personal anymore. People have triggers and for some, the past may trigger what is currently occuring with them presently. Which leads me to a motto that I live by daily, "Always be nice and be as compasionate as possible with people, because you have no idea what they maybe going through!
    Like Amber, I'm also curious as to what the description to music therapy entails! I'm on the UCI Medical Center campus 1-2x a week and always pass the oncology building, on my way to case management!