As if having a toddler with cancer isn't enough, there is so much that goes with it. Suddenly you are a captive to other (often slowly moving) people, most of whom are focused on their own schedule and could give a damn about yours.
I seriously feel like we became prisoners as soon as Andrew was diagnosed. I almost feel amazed that I am allowed to walk freely around in the street. For a while there, it didn't happen.
You become completely dependent.
You are dependent on blood to be delivered, and could end up spending six precious hours of your life waiting for it, while sitting in a boring hospital room with an anemic and irritable child who just wants to go home.
You are dependent on radiation machines which seem to break down at the rate of most copiers.
You are dependent on work schedules and doctor schedules and hospital hours and annoyingly inefficient procedures that seem like they could easily be streamlined, but aren't...
You are dependent.
I hate dependent.
I had a little freak out with the radiation treatment team yesterday (you know, the ones who are so nice?), because the machine stopped working last week and we had to miss a day. Which meant that either we fit in an extra radiation treatment, or we had to stay in Houston another weekend and a day (THREE EXTRA DAYS). And when your 6 year old is in Phoenix and has been for 2 weeks, and when your house is in Phoenix and you have been living in Houston for 6 weeks, YOU WANT TO GO HOME. You do not want to be told that you have to come an extra Monday for radiation when you WANT TO GO HOME and your precious tickets are scheduled for Saturday.
I had the freak out because they said that they weren't going to be able to fit in the extra treatment (after they had previously almost guaranteed that they would). I didn't mean to. But I couldn't help myself. So I stormed out of there like a toddler who didn't get her candy and immediately proceeded to email and call everyone under the sun so that I could GO HOME. And it worked.
But those nice people in the treatment center didn't look so happy to see me today. I think, to their credit, they were worried about giving him two treatments in one day. But the doctor approved it, so I am thankful. I thanked them for "fitting us in" but at least one of them didn't look so generous as to forgive me. So I feel kinda bad. I don't want to end things on a sour note. But oh well. I am crossing my fingers that all will go well over the next few days, and that the machine doesn't break down anymore, and that I can GO HOME!
I hate dependent. I hate it all.
There truly is no place like home. You all have been through so much and the broken machine and additional "fit you in" treatments were just the proverbial straws that broke the camel's back. I remember almost snapping my husband's head off while we were house hunting b/c we had decided that we would accept a counter-offer if it was XX amount, and the realtor came back with the correct XX amount. Then, my Hubs changed his mind about the house. My heart was already set on closing the deal and my furniture was half moved in (in my head anyway). I was so disappointed and it came across as anger. I know you want so badly for the treatments to be done. You want so badly to be home and have your family together again. That is totally understandable. Any medical professional should be able to understand that as the source of your "freak out" and not take your outburst personally. It's called putting yourself in someone else's shoes. I hope the next comment I leave is a "welcome home" one for you. -Eastlyn
ReplyDeleteYou are almost home! Almost done! You are doing such a great job advocating for your child and for your family... Hang in there. You are Andrew's best advocate and you never should have to apologize for doing what you know will be best. Every situation like that should come with a lesson and an opportunity for improvement. In the medical field we rely on our patients/families to give that feedback... Its how we make things better in a world that is by nature very inefficient. Hopefully they will take the experience and use it! Can't wait to see you all!
ReplyDeleteI don't blame you for snapping. It always seems that the closer you are to being done at the hospital and getting home, the slower everyone works. Maybe it's a matter of perception, but suddenly all those amazing, efficient people turn into bumbling idiots. I'm glad that you are getting closer to being home.
ReplyDeleteI am keeping my fingers (& TOES) crossed that all goes well so you can GO HOME! I can't imagine your ordeal and I am sure they all understand, deep down, the stress that you are under. Hang in there :D
ReplyDeleteYou want to go home. You've been there for too long. You're sick of it all. They surely understand that and empathize. How could you possibly be anything but irritated, overwhelmed, and fed up with a potential delay?? Wishing you and Andrew the peace of home (and very, very soon)!
ReplyDeleteWouldn't it be nice to click your Ruby slippers like Dorothy and be home with everything the way it should be. Soon, very soon. With so many praying for Andrew, it will happen. Remember to breathe.
ReplyDeleteOH honey I know just how you feel, I didn't ask for any help until about 2 months before Mark passed away. That was after 3.5 years of doint it "on our own" can I tell you the relief that came with asking...it was amazing. I'm still praying!
ReplyDeleteYou have to do what's best for your family. Hopefully they will understand that...
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