Friday, May 16, 2014


Lily woke up Tuesday feeling yucky.  But to be honest she feels yucky a lot. It makes me feel worse knowing she feels yucky when I feel yucky. I felt pretty gross last week, but was starting to get over the hump. Tuesdays I normally have physical therapy, which has actually made a pretty big difference in a lot of things. I remember my mom being pretty stunned that I wasn't automatically referred to PT after my surgery. When you go to a military hospital, you see missing limbs, you see burns, you see lots of tough situations. Due to the budget- many services are at a premium and dependents get bumped down on the priority list. But when you see someone who has lost part of themselves in defense of this country- you tend to keep to yourself about the little ache in your arm where you have a little divot- after all you still have your arm. 

PT was referred after my genetic counselor went to a conference and this clinic was there offering massage. There are many conditions that massage help and I have many friends who use it regularly. For insurance purposes it is called manual manipulation and definitely does not have the bells and whistles of a spa visit- but I have long since fallen out of love with a lot of bells and whistles in favor of good old fashioned function and peace. Not only does massage help aches and pains, it help loosen up scar tissue and drain lymph fluid. The whole process decreases stress emotionally and physically- which is excellent for healing. 

As a bonus- the Clinic also offers acupuncture with visits. I have been traveling an hour across the island and paying out of pocket.  A true test of whether or not you need something and if it's working- is willingness to pay for it yourself. Having PT and acupuncture closer meant nothing but good things for me. When my PT visits ran out- we had to see if insurance would renew. I told them flat out- regardless I would keep my appointments because it was helping. There aren't a lot of straight answers with cancer and cancer treatment. One of my big beliefs is to do what works. The routine we put in place is working- I don't want to mess with it. I actually get a little panicked when I have to switch my appointments. Sure I can do many of the stretches at home, and Phil is a pretty good stand in masseuse- but acupuncture is something I'm gonna let the professionals do. 

So the squirt complaining of aches Tuesday, I worried that she was sick but many times she is fine. I sent her off to school with a slightly runny nose. As I was getting ready for Physical therapy- I get the call from school- Lily is full blown congested and can't possibly carry on with her day. I sigh and get ready to reschedule therapy. For Phil, who is sitting at the table doing bills- it's yet another night week at work- which just makes for long days and nights in our house. He smiles, senses the tension and offers to go get monkey. And he wants me to go to physical therapy- he sees how much I look forward to it and how much it helps. I am so lucky to have him. I have so many friends whose husbands would scoot of to work and not look back- but that is the benefit of cancer I guess- you get a better perspective on what's important. 

I get back from PT and Lily looks pretty punky. I feel bad- I want to snuggle with her- but kinda terrified of the petri dish aspect of her composition right now.  We settle for sitting side by side, Catching up on a season's worth of Once Upon a Time episodes. I remember a sickness a couple years ago where Lily and I started watching Once. And here we were again, a kind of tradition. Tuesday became wednesday- she was even stuffier.  I offered Starbucks to test the health waters- she couldn't taste anything- didn't feel like eating.  Her teacher called to check in. Maybe tomorrow. Wednesday became Thursday- I offered Aloha salads- something healthy but a bit of a trip. By the time we got there she was asking to just go home.  She don't have enough energy for voice lessons. Maybe tomorrow- there's a celebration at school. Thursday became Friday. Today we sat and looked through pictures. While collecting photos for my grandma's funeral book- I realized what a sad state of organization my photos were in.  I also ran across some gems. Lily and I seemed to be an appropriate pair energetically- for looking through pictures.  Her teacher calls, worried. I've spent more time than I care to recount- making sure everyone at school understands the seriousness of her condition and I've always promised that if she is sick- I'll keep her home. The Petri Dish that is Bella has the same cold and is perfectly fine at school- with the rest of the pertri dishes. She didn't even ask to stay home and would rather play. Phil complained of symptoms briefly- but like always- just is not a complainer- I knew he felt bad when he climbed into bed at 9:30. 

This week reminds me of years past- when I, the healthy child would get overwhelmed with school and life and the pressures of having ones you love dying from cancer. Mom would say- today seems like a good day to take a mental health day. We would go to Estes Park, or just lunch, or just be. Sometimes when you feel loss- the worst place in the world is to be surrounded by people who don't understand. Lily could probably go to school and I would worry and carry around my phone, waiting for the call. Or we could take it easy and let our bodies heal. Sometimes the best therapy is avoiding therapy at all- taking care of things before they get bad- before they hurt. It reminds me of the normallness of colds and viruses- wasn't I just complaining I needed a little more normal in my life? Hopefully it won't become a habit and hopefully I am giving her what she needs. Because even though I hate her being sick and even though I feel like I should be doing more, sometimes just hanging with Lily is the perfect therapy. 

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)