Chemo Class and Resisting Routines

Yesterday I had to meet with the nurse practitioner at my oncologist's office to prepare to take my oral chemo. It was a pretty standard office visit.  Each time I go now, I have to do a neuro exam which involves some memory exercises, the ability to walk in a straight line touching heel to toe, knowing the date, and some strength tests to see if my left and right sides are balanced.   It's challenging to go to the appointments because you know that the people in the waiting room are likely going through some difficult health situations.  The neuro-oncology floor has a pretty exclusive guest list.

The nurse practitioner was great and very helpful.  Again, I can call her at anytime directly with any questions or concerns.

She filled out prescription requests for the chemo drug which is called Temodar and ordered them for me.  Since the medicine is very expensive the doctors have to try to get the orders in early in case insurance companies try to reject the requests.  The pills have to be taken on an empty stomach for absorption and I can't eat for an hour before or two hours after I take them.  Some people wait until bedtime to take them and some people take them in the morning and hold off on eating breakfast.  In addition to the Temodar I have to take Zofran for the nausea that will likely accompany it.  The doctor said that generally there is a correlation between how nauseous you were during pregnancy and how the medicine affects you.  I was very nauseous with both kids, but never really vomited.  The doctors can adjust the nausea meds if I feel sick so that the Temodar is not tolerable.  Another common and lovely side effect is severe constipation so I'll have to take laxatives to go with the chemo and the Zofran.  Lastly, I'll be on a prophylactic antibiotic to prevent infection.

The radiation will last for 6 weeks Monday-Friday, while the chemo will be the same six weeks, but 7 days a week.  This first round will be tough as it will be 42 days straight of chemo and then, when radiation and this round of chemo are done, I'll have a four week break from the chemo to let my body recover.  So, if all goes well I should have a little break in mid April.

I'm still taking the anti-seizure medicine which we thought was to prevent seizures, but the doc told us that it actually just reduces the risk.  During this time when the brain is still recovering from surgery and there is other activity targeting the brain, seizures are more likely.  They could be in less severe forms and may show up as a recurrent tingling on my left side or other repetitive symptoms, generally on the opposite side of the tumor.  We haven't noticed anything thus far, but we had a talk with the kids last night about how to use the emergency call buttons on our phones just in case.

We also had a mini-handwashing class for the kids which sounds funny, but once we get this show on the road, germs are going to become my enemy.  If the kids have runny noses, coughs, etc. they have to keep their distance.  They (and all guests) will have to wash their hands every time they come in the house and at the other obvious times as well.  Noah went to put a lime in my seltzer last night and his whole hand went in.  To begin to teach them about the transfer of germs we threw out the seltzer and the lime and got a fresh glass after Noah washed his hands.

I'll have blood drawn every Friday to keep an eye on my red and white blood cells and the doctor was clear that there won't likely be any surprises.  If my numbers are dropping it will be a slow and gradual process either up or down that we can watch and monitor.  In very rare situations people have to have blood transfusions.  I had blood drawn yesterday to do a base count and to have some numbers to start with.  If I don't tolerate the Temodar they can adjust the amount of chemo I am receiving to a point where I can tolerate it.

I'm in a weird place with all of this because for so much of this journey I haven't had a clue what was going on.  I would say from December 30th to mid January I just did what people told me to do.  I was drugged, recovering, sleepy, or exhausted and I just trusted that Paul and those around me were making good decisions.  My friend here who is going through his brain tumor resection had a month before his surgery to research and ponder and think about what might happen.  I can't say I think one is better than the other, but there really hasn't been too much idle time for me.

Today I went to UW for my follow up MRI scan to see how my brain looks post op and to also have a baseline before radiation begins.  I felt very different going in to this scan because for the first time I really felt aware.  I don't remember my last MRI on January 3rd or if I had any reactions to the dye. I was also  nervous because of my mask event last week.  When I was taken back for my scan I was so keenly aware of my Ash Wednesday thoughts as many other brain tumor patients were in the chairs around me, all hooked up and getting their contrast dye before their routine MRI scans.  I tried not to stare but I was also looking to get a sneak peek at how their hair loss looked.

And while I was sitting there the same thought kept going through my head... I don't want to. I felt like a three year old who doesn't want to eat her vegetables or put on her coat.  Some parenting book I read years ago said that we are all really three year olds who have learned how to properly suppress our emotions, and only let them out in acceptable ways.  I wanted to say no to the technicians and the lab techs.  Mostly, I don't want the hospital to be my routine.   The girl across from me was my age and so cheerful, joking about her veins and I knew her spirit was joyful and would be helpful in her journey, but for today I just wanted to cross my arms and pout (but I couldn't because of my IV).

So, I went back for my scan.  I listened to classical music which made me miss the power of the organ and the postlude and the choir.  I did fine.  No panic, no fear, no anxiety.  I prayed going in for the Lord's strength and peace and I was granted those blessings.

I have to call my doc in two days to have someone interpret the results of the MRI for me.

I'm thinking and praying a lot about disease and illness.  I'm reading about understanding or explaining how and why illness and disease enter our lives and contemplating the why of it all.  I'm not full of "why me" questions, but I think I'm more focused on being able to explain my peace with it all in case someone else is struggling or wants to know how I am reconciling it all.  I haven't been able to put my thoughts quite into words yet and I believe that wrestling and holding things in tension is healthy and helpful so maybe at some point I'll put it all down in writing.  My simple answer is based on good reformed theology -- that God is supreme and all knowing and we aren't.  And there are some things we aren't meant to know or explain.

But my good buddy Ann Voskamp (she doesn't know we are such good friends) still lingers in my thoughts.  In 1,000 gifts she shares...

“...life change comes when we receive life with thanks and ask for nothing to change.” 

Those are big big big words.  Some would say they are not the words that allowed David to beat Goliath, not the words that allowed Moses to get out of Egypt, not the words that have allowed the oppressed to find freedom, but I guess for me they are words of peace.  They are words that believe that God's got all of this in his control and my job is to give thanks for so many beautiful moments of faith and for God's spirit that lives in me and allows me to start a few new routines.