Friday, June 19, 2009

Only Grace

Since mid-April I've had Matthew West's song, "Only Grace" in my head and I hadn't heard it, even on Pandora, until tonight.  I don't know what the lyrics are in the verses, but the chorus is a great reminder that we have "only grace, only love" and that it's enough.  Amen and amen.

It has been a tough couple of days.  Yesterday started out simple enough.  We had to get to the clinic around 8 am, get blood drawn, then meet with my oncologist.  That appointment went well, and Dr. Wolf hugged me as she left the room.  The nurse practitioner had a hard time finding the consent forms for me to sign, but we eventually got all that taken care of.  We were headed to the hospital around 11am to start chemo, or so I thought.  Mary went to the car, got our clothes & computers, I waited to get lab results (which I never got), then we headed for the hospital, sure we would be settled in a room by noon and ready to go.

Well, that didn't happen.  When we got to admissions, we were told that there were no beds on the unit I needed, and it would be "hours" before there would be a bed available.  When we tried to find out how many hours, we got a standard of answer, "it will be before 11 o'clock tonight, when our office closes."  Grrr.  I was irritated.   Mary tried calling our contacts at the clinic to find out what they could find out, but no luck--no one seemed to have any answers.  About the time I was about to blow a gasket, we had a little blessing.  My friend Kendall called.  She had just finished her appointment at MD Anderson and wanted to get together.  Kendall and her friend Lauren picked up Mary and me and took us to a great burger place for lunch.  Kendall has just finished 8 months of treatments, and was able to walk us through some best practices when working on admissions.  It was calming for me to hear that this wasn't a singular experience, but something that happens when the world's cancer patients who can get to Houston come here.  (Mary actually helped translate between the un-helpful admissions woman and a couple from Peru on a couple of questions.  You go, girl...at least someone is helpful!)  The population of the floor I'm on is typically 104-105% of capacity, which means the staff is always busy and juggling patients.  It was a great time for God to remind me that I wasn't the only person involved in this fight against cancer--there are other patients, medical staff, and families to consider.  It also served as a subtle reminder that whenever I finally did get admitted, to not take my frustration out on the nurses/staff.  The busy-ness of the floor meant that had had a full census of patients all day, not that they had been slacking off and just looking for something to do.  Lesson #1 learned.

After lunch, Mary decided that our best bet was to head back to the apartment, so that is what we did.  Admissions had my # and her #, so we could safely be 30 minutes away and still get to the hospital in plenty of time to "claim" my room when the time was right.  Thank God that was what we did.  It was almost 4 hours later that we got a call.  We ate, rested, visited, talked about our frustrations (and how we didn't want to make the other one suffer b/c we were both frustrated), and had some great coffee.  Much better than pacing around the crowded hospital lobbies, that's for sure!

When the call came in, we headed to the hospital and were settled in a room around 630pm.  7pm is shift change, so rather than try to get things started then, the nurse explained how things would work with our night nurse and started gathering materials we'd need for starting chemo that night.  She was very sweet, and I immediately was calmer about how long we'd waited.  Mary unpacked our clothes, organized the toiletries, and set out my Bible, some stationery and a few other things I requested.  The room is a bit small, but fits the two of us perfectly.

The night nurse came in and started to get right to work.  She started to check my record to find out what I'd need, and discovered that there was one critical lab result missing from my report.  I had to have more blood drawn and wait to make sure everything was where it needed to be.  Once the labs were drawn, the nurse started looking for the consent forms, and couldn't find them.   So, more waiting to sign consents again (sigh).  Then things could start.  One doctor had told us she thought chemo would start sometime between 3 and 4pm (which in the moment, sounded late) and the first drops actually started about 1205am Saturday morning.  

And drops they were...I had slightly less than 1 liter of the first med to infuse, and it took a whole 24 hours.  When they infuse other fluids, a liter usually takes about an hour.  I am now 26 hours past my start time, and the 2nd drug is almost finished being infused.  The first one went into an IV in my arm, and this 2nd one is being pumped directly into my abdomen.  Soon I'll get to spend an hour or two turning from side to side to ensure the medicine coats my entire abdominal cavity.  Fun.

To pass the time today, Mary and I explored the hospital.  We walked through the rose garden outside, got a free hat for when I start losing my hair (or even for now--it's cute), had a couple cups of coffee (sbux, of course), and got a free hair wash and style for me.  Mary also discovered the "cybercenter" where she faxed some stuff for free, and picked up a couple of movies for us to watch in our down time.  We also rested, ate 3 great meals, and had great care from our nurses and doctors.  For meals, we can call anytime we want and order whatever we want off their menu, and it gets delivered to the room within about an hour.  Mine is all free, and Mary's has been pretty affordable, unlike typical "room service" meals  Happily, most of the food has been tasty--way above what we were expecting for hospital food!  Plus, I am able to order enough to have snacks between meals.  As in the rest of life, smaller, more frequent meals are better for me during chemo, so I'm going to try to stick with that.  Anything that keeps me feeling good during this is what I need!

Sorry if this is too much information for one post, but it is 3 in the morning, and I don't have a lot of choices with what to do, so I thought I'd share everything (I skipped my bathroom breaks--you're welcome!).  Thanks for sticking with me through all of this, and letting me be humanly frustrated when things don't go the way I plan them.

I'll close with God in action in all of this, lest I forget...today Mary and I were trying to briefly explain to Judy what would be expected of anyone who wanted to come and stay with me during treatment.  Mary listed as a "bonus" that for admitting day, we simply need to call admissions once we are ready, then go do something fun and/or relaxing until they tell us our room is ready.  Less than one day, and she was already able to see how our toughest frustration is actually a gift.  

Thank you, Lord, for that perspective.



4 comments:

Suzanne said...

Wonderful to see a post from you this morning, knowing when you are ready & have enough to communicate you will. It's a new pace & schedule you are at, different from your normal, sounds like you are adjusting well & finding your coffee! That nursing staff will soon realize what an awesome person they have in you and they will look forward to each visit & take extra care of you- I have no doubt, because you are too wonderful for anyone to breeze past. I love you!

Anonymous said...

It is great to hear from you. I have been thinking of you constantly this weekend and wishing I could be there just to give you a hug and wish you luck. I really enjoy reading everything that you write. You are an amazing writer. I still think you need to write a book, but for now, your blog is great. Thanks for keeping us all posted. We love you!! -Janice

Sturgmom said...

I'm sure that all the waiting was frustrating! But what a gift MD Anderson truly is, huh? I truly pray that everything goes smoothly for you. Keep us updated!

Mary said...

It's funny, how seamless everything was, once we let it be what it was, nothing more or less. Met some nice people, had a nice stay and Amy was active and engaged in her treatment through it all. I'm so glad to have been with you for the first part of the first round. It was amazingly low key. You are amazing! May God keep you rested, nourished and open to plans being changed as they need to be... faith, rest, hydration and laughter, and NO STRESS are the best medicines! I love you.