Sleepy joyful endings

When I met with my oncologist at the last appointment, we debated whether I would skip the last treatment all together.  There isn't evidence that shows 11 versus twelve is better.  I was trying to maneuver the dates with some events in my life and at the end we decided to just keep it where it was.  With this scenario I could be finished by the end of May and just be done for the summer.  I decided to keep the treatment during the same week we had visitors and in the middle of a lot of activities on my calendar.  I wouldn't have it any other way.  As in the past, the first few days are okay and then the symptoms increase greatly.  This last round somehow managed to magnify itself!  Perhaps my body was having some trouble saying goodbye to it's bedfellow Temodar.  I needed multiple naps on days 3 and 4.  By day 5 I was more nauseous than ever and I slept all of day 5, 6, and 7.  Of course, God's timing is perfect and I was home alone with the kids on those tough days.  They were thrilled to have a TV marathon and I was happy to be snuggled in bed with them while I rested.  No lunches to pack, no activities to drive to. I tripled up on my nausea meds, stayed in my pajamas and decided to ride out the storm.  

I barely got out of bed this morning, but worship today was so meaningful that I am so grateful I pushed through the cloud.  A beloved, healthy father in our congregation passed away suddenly last week at age 49 due to heart failure.  The entire church has been reeling with anguish and today we had a collective time to stand in disbelief and join our hearts in prayer.  It was a beautiful time to feel pain together at a great loss, a time to unite in promises to a mother and her children, a time to lean on each other and remember again that each and every moment is a gift, not to be wasted.  

It is in community that I feel most strongly that the ups and downs of life are manageable.  

We sang together the words of Zephaniah 3:17

The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with   gladness; he will quiet you by his love; he will exult over you with loud singing.

In God's community I feel quieted.  I feel that my personal longings and desires and baggage and junk are less prominent and often less important than I make them out to be.  In community I am reminded that I am not on this journey alone, even if I sometimes pretend or even boast that I am.  

By God's community I don't necessarily mean the church, though I feel incredibly blessed to have an amazing church community.  I mean the people that God has put in my life that I believe God is clearly working through.   

As I toasted with old friends on the last night of medicine and shared in our many years of friendship, a neighbor quietly knocked on the door with a large and gorgeous vase of flowers because she remembered what day it was.  My exhausted misery was mixed with old friends, great food, new friends, pain and beauty.  

It's all mixed up together.  It's ugly and beautiful.  Sometimes, too often, I only want the beautiful and I completely forsake the tough times.  

Today as the fog lifted and I felt my body rise again I was able, for one brief and fleeting moment, to hold all of the complexities together with gratitude.  

Round 12

Tonight I begin my last round of chemotherapy.  I took my first dose of Temozolomide on March 16, 2015. I can't wrap my mind around all of the emotions this brings up for me.  14 months of pills and appointments and nausea and exhaustion.  So many nights of staring at these pills trying to find some way to avoid taking them, but at the same time knowing that if I don't take them, I might be filled with regret.  Rearranging my eating schedule, explaining to my kids why I can't play with them or why I need another nap.  Regretfully declining field trips and birthday parties to avoid germs.  Making up stories about good guys and bad guys fighting in my brain.  Most of all, pushing through my body's desire to collapse into my bed because I needed to be a mother and a wife and because I wanted to feel alive more than I wanted to let the medicine and the treatment take over my life.   I keep the doctor's words that those who  "keep life as normal as possible fare better than those who live as a sick person" lodged in the front of my thoughts.  And right behind that mantra I hold the words of my departed friend Becky telling me that to keep it normal puts an awful amount of pressure on a patient to work doubly hard and that if somehow you can't manage to keep things normal you are hurting yourself.

But more than anything tonight I feel such a great hesitation to rejoice.  The hesitation has nothing to do with my lack of joy to be at the end of this part of my journey.  It has more to do with my greatly increased knowledge of the interconnected-ness of life. I don't feel the freedom of taking the last pills because I know that there are people all over the world staring at their treatments wishing they could be anywhere else.  Tonight I share in their duplicitous feelings.  The promises that these treatments will help, when in reality, no one really knows the complexity of these diseases and what will ultimately cure them.

I will never again claim to understand what someone struggling with illness feels like.  I will never say "I know how you feel," because I don't. Even if two people have the same diagnosis and treatment, their life circumstances, their bodily response, and their emotional state will vary tremendously.  We can never know how another person really feels and it is best to be supportive, nurturing and loving, while leaving the cheap quips out of the discussion.


I feel so much more able to identify with a deep ache of diagnosis, of the unknown, and of dangerous wandering thoughts.

But more than all of this, I feel connected to a wider range of emotions.  I feel pain more deeply, fatigue more fully (even more than with a newborn!), fear with more tears, sadness with a wider lens, joy with a brighter spirit, humility with my pride taken down quite a few notches, community with a new sense of importance,  and hope, perhaps not a hope without some fear still tethered to it, but the hope that each new day brings.   The Lord's prayer says "Give us this day our daily bread."  I've heard it said many times that we receive bread enough only for today.  Not enough to store aside for tomorrow, not leftovers to horde from yesterday, but just enough for today.  When we try to live on more or less than our provision, we are left longing.  So, when I speak of hope, I have enough hope for today and enough thanksgiving to see what is right in front of me.

I suppose this is some sort of launching pad.  I've seen many people have a last day of chemo celebration, but for some reason I don't feel connected to that because I know so many chemo treatments are so much harder than mine.  There is no great port removal or end to infusion centers.  For me it is just the joy of throwing away the last bottle marked "danger" that litters my bedside table.

I'll move into a new part of my journey.  My appointments will be less frequent.  I'll be monitored less closely.  I'll try to live a life less defined by this diagnosis.  Each and every day will be a day farther away from this part of my life which has both positives and negatives.  I will likely begin to slowly slip into the normalcy of taking life for granted.  The medicine and the doctors keep the frailty of life forefront.  It will be a challenge to remember the joy I felt making my children hot dogs a few weeks post surgery, but perhaps I can find a way to rejoice in the fact that I don't need to notice routine things as special, but be grateful for routine itself.

So, tonight as I begin my last round I welcome the beginning of a new end and I pray for the millions of people, some of whom I am blessed to know, who are still trying to maneuver the unsteady path of treatment.

New growth, the good kind

In the past few months, things have continued to feel very normal.  The last two rounds were rougher than I expected because the in-between time has been so great.  However, rough has a new meaning.  It means that I feel the fatigue and I need to rest.  At this point in my journey I am able to recognize the signs, know what my body needs and respond appropriately.  Being aware of the warning signs helps me to feel so much more in control.  Probably the hardest part of the chemo weeks is my lack of desire to be healthy.  I only feel a desire to eat comfort food and I have no energy to prepare anything.  I don't have the ability to exercise, which is what has been giving me the feeling of strength.  It is still hard to remember in those weeks that I will eventually get back to my active self.

My last two MRI scans have come back clear, which is always a reason to rejoice.

Though I have made my proclamation that I'm not sick (which still holds true based on how I feel and act and live), the facts still linger about the 100% recurrence rate.  So, my mind still occasionally reverts back to the thought of when I'll be back in the place that I was last year and the thought of a second craniotomy.

I still continue to be incredibly blessed by the community that God has provided for me.  My Bible study surrounds me with so much love and encouragement, in addition to the weekly gift of purple carrots.  My neighbors regularly ask about how I feel and what I need but they don't focus on it and they don't intrude.

I also keep in the forefront of my mind that my role is to live into my beliefs.  To say things your whole life and claim that you believe is different than living through difficulty and truly living in a way that reflects that the promises are true and real.  Even if my doctors will never say that I am "healed," I really feel so strongly that I have been made well.  The gifts of the Holy Spirit are more present and real than I ever imagined.

So, I will return to my oncologist on May 20th and begin my last round of chemo that week (to even utter those words gives me chills).  I am so looking forward to a healthy and happy and strong summer of sunshine and friends and family.

And so, yes, the new growth is certainly in my soul, but also in my appearance!!!  I feel so blessed to have tons of new hair growing in some of the bald spots (not all), but the new hair is CURLY, SO CURLY!  Everyone told me it would grow back differently, but it is impossible to control the side hairs by my right ear and the hair in the back.  Paul helps me try to flat iron it and I use a lot of gels and sprays to help it to not stick out like springs, but I have no reason to complain.  It is just a reminder to me that my life looks different now than it used to.  The hair is a symbol of gratitude.

A few months ago, my friend Kelsey was struggling through some things with school and lamenting that life is hard.  I said to her, "life doesn't get easier, it gets harder, but in the midst of the difficulty, you also get stronger." I imagine my 20 year old self full of insecurity that my hair didn't look good and now I see my crazy curly hair as a sign of redemption and hope.  I will continue to lean in to my faith and to live out what I believe.  I hope you do too.