3-16 Finding a way to show up March 16, 2015

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I woke up the morning following my last post with a feeling of dread after yet another near-sleepless night trying to get my mom’s pain under control. I felt stripped raw–so vulnerable–and I questioned my own sanity at putting something so honest up in the public sphere. Who does that?? But I shouldn’t have worried, because following my mother’s advice rarely works out poorly for me. The response I received was overwhelming, and you all gave me kindness and strength and love that could very well have come straight from her. Overall, it was clear that you all agree with CT (of course). I need to take better care of me.

Still feeling a bit frantic, I decided to go to the store and hopefully clear my head. Leaving the house these past few weeks has been a great source of anxiety for me–I worry about about running into people I know, about having 5 minute conversations about my situation, about things going wrong while I’m gone (the thought that she could die while I’m running around trying to find the right brand of vanilla almond milk is paralyzing). I sat in the car outside of Kroger on my phone, delaying the task while fighting back tears. Then I saw this:

Today has been rough. I’ve been missing my Aunt Linda so much. When I’m upset, I clean. Maniacally. I’ve been tearing apart my room all morning. I got to my closet and sat on the floor. I look to my left and there she is. Showing me she never left. The stone has two angels carved into it and I’ve always thought of them as my aunt Linda and Uncle Tom. On difficult days I carry it with me for strength. The last time I saw this stone was the day I took it to Sloan for my last scan results. I haven’t seen it since. But I wasn’t afraid I lost it. Because it always shows up when I need it. Like today. So for anyone out there thinking you lost someone that you love, you haven’t. They’re still with you. Call for them. They’ll find a way to show up.


I met Kathleen* almost five years ago at a concert in New York. She’s an all-around incredible human, and there have been a lot of times since then that I have drawn strength from her words, but this just knocked me out. I sat in the car sobbing, feeling all of the misery and panic inside me just rush out. Of course she’s still with me, of course. I just need to allow her to show me that.

Later that evening Alive Hospice sent over a R.N. to evaluate Cynthia and try to better ease her pain and agitation. I cannot say this enough: hospice workers have some of the most beautiful souls I have ever encountered in my life. After we talked about her symptoms, and the concerns I have been having for her comfort, Debbie looked at me and said exactly what I needed to hear–that I am not, and cannot do anything wrong in this situation. She spoke plainly about the reality of all of this, and answered questions I didn’t even know I had. While we talked, Cynthia slept between us, and she assured me that we could not say anything that she did not already know–that it is important to keep talking to her, because while it is difficult for her to communicate with us, that doesn’t mean that she doesn’t understand what is happening (in fact, there are many studies that show that at the end of life, even people who are completely unresponsive are actually aware of everything that happens around them). As always, Momma still calls the shots, and she would want complete transparency.

The next day felt like a breakthrough in my mindset. I tried to make deliberate choices to honor her wish–to take care of myself, and in doing so I felt like I was better able to take care of her. Sarah James came over and we went out for a bit together. We talked about how confusing this whole thing is, how at times we are overwhelmed by how quickly our circumstances have changed, and about how glad we are to have each other to lean on.

So when I was awakened early this morning by her erratic breathing I just…started to talk to her. It was easy to imagine her responses to my babbling. As her breath continued to be in turns fitful and even in her sleep, I pulled out my copy of Tennyson’s complete works (published in 1868, a Christmas gift from her last year) and started reading Ulysses. Halfway through the poem, she opened her eyes. When I reached the last section, she smiled. I have the last line of this poem tattooed on my body, in her handwriting. (All of my tattoos are in her handwriting, actually. It’s something we’ve secretly shared with each other for years.)

Come, my friends,
‘T is not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down:
It may be we shall touch the Happy Isles,
And see the great Achilles, whom we knew.
Tho’ much is taken, much abides; and tho’
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

I kept reading. I read i carry your heart with me by e. e. cummings. She looked in my eyes and moaned softly, and nodded. I read one of my recent posts, A Lifetime Contained. The lines You have many ordinary days behind you, Most of which were filled with sweat and work evoked a noise joined by an eye roll that I took to mean “Yes, Emily. Obviously.” She closed her eyes, face going soft when I spoke of the realization of her next big moment. I asked her after a while if she wanted to sleep some more, and she nodded. I turned out the lights and we fell back asleep. She’s been mostly asleep since then.

I had a conversation with my mother at 4 a.m this morning. I can’t wait until the next one.


*Kathleen Emmets is a lovely writer, and is not at all unfamiliar with fighting this vile, insidious disease. You can find more of her work HERE, HERE, HERE, and HERE.


3-9 A Lifetime Contained March 9, 2015

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This weekend has been so sweet. Maybe someday I’ll be able to write about all of the silly, ridiculous, frustrating, joyful, strange, goofy (all so precious) moments that have happened in the past 3 days, but for now my dad and my sister and I must hold them close, protect them, cherish them. We’ve held our breath for days, on the edge of hilarity. She’s been so animated, so herself. Even though her aphasia has gotten extreme (a lot of the words she says aren’t at all what she means), every now and then there will be a second of pure perfection. On Saturday, as she dozed and I wrote, I heard her say “Don’t you doubt for a second–you have given me a lifetime contained.” Later that night she declared Sarah James and I the wardens of her heart. “You guard it,” she said. Even in the in-between times, when it seems like she isn’t quite sure where or when she is, she’s still all Cynthia: impatient, stubborn, captivating.

Yesterday she and Sarah James lounged in bed while I sorted through a dresser drawer stuffed with papers. We giggled for hours over her C’s in Bowling and Social Dance freshman year of college (a small stain on an otherwise impeccable transcript), passive aggressive notes from mine and SJ’s childhood (a list in my handwriting includes ‘LEAVE SJ ALONE’ as both a chore and a goal, a list in hers states ‘she won’t leave me alone’ as one of the many reasons I annoy her), a tiny faded photo of her and dad laughing poolside in the early years of their marriage–all tucked in amongst paperwork and Target receipts. I could spend years combing through this house and continue to be delighted by the riches sheltered inside.

Aruba, 1995

Aruba, 1995

On Saturday night, when transferring her from her wheelchair into bed, she complained of pain on her right side, above her ribcage. The area is swollen, and very tender–likely caused by inflammation in the liver due to the spread of the cancer. This morning she woke screaming at 7 am, in excruciating pain in both her head and chest. We got it under control and she slept most of the morning. When she woke on Friday, she looked at me and said, “I think I’m going to beat this,” and my dad, my sister, and I have been living in that suspended moment ever since. I’ll be honest with you all: I’m trying so desperately not to be angry, to instead be thankful for this borrowed time, but sometimes it seems impossible. My dad told me that it’s hard to understand why we can’t just keep her, and I agree. She’s ours. She belongs to us (and we thank you for understanding our need to be selfish with her time). She’s worried a few times that we’ll get bored of this, conscious of our needs even now that hers surpass them, but my breath catches every time she smiles. I found this passage in with all the rest of the treasures–

Don’t you kids know,
That life is made up of ordinary days
When there is no one to pat you on the back?
When there is no one to praise you?
When there is no one to honor you?
When there is no one to see how brave and noble you are?

Almost all of life is made of these ordinary days.
And it is how you live your ordinary days
That determines whether or not you have big moments.
Get out there and make something of your ordinary days.

You have many ordinary days behind you,
Most of which were filled with sweat and work.
And you have also had some big moments
That were a result of the ordinary days.
But there is a big moment that has not
been realized for quite some time.

It is time for that moment!

Ann Kiemel Anderson “I’m Out To Change My World”

–we want to stay grounded in these ordinary days, as much as possible, for as long as possible.



25 vials—countdown to trial #4 December 1, 2014

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Today after the lab technician finished drawing 25 vials of blood for screening, I figured things could only get better. It took awhile to fill those vials, but the process was like an assembly line, one vial after another. The informed consent form estimated the draw to be about 11 tablespoons, but it seems like more and I wondered if I’d have any blood left when everything was done. I did, of course, and I didn’t feel faint or ill. As usual, the staff at Sarah Cannon took great care of me.

The next step is this Friday (day minus-3), a one-time, small-dose infusion of an FDA-approved chemotherapy drug shown to improve immunotherapies. This drug should help the immune system overcome tolerance to the cancer drugs that target the tumors.

Cycle 1 begins Monday, December 8, with a schedule of two drugs already in the trial procedures but which for the first time are being given together in this trial. One drug is an experimental cancer vaccine designed to help the immune system create antibodies to stop growth of cancer cells. It’s given weekly in shots subcutaneously (under the skin) in four specific places (right upper arm or thigh, left upper arm or thigh, right and left abdomen). The second trial drug is given by infusion and binds an antibody to a molecule on the immune cells. After 8 weeks, the infused drug stops, and the injections continue for a couple more weeks. Scans are scheduled by day 84 (at 12 weeks, around the first of March), and those results plus regular blood work will determine if I continue with cycle 2. The procedure changes then too, with only one treatment every six weeks and the other five weeks off.

The next three months will be definitely complicated, but they feel this procedure is promising. That means I’ll show up weekly for whatever is on the schedule, and I’ll focus on the moments not the weeks. I’ll pray for predictable and manageable side effects and for clear results that indicate whether/when to stop or to continue this treatment, and I’ll continue to put my faith in the Lord.

I remember when I was diagnosed almost three years ago and how confused I felt. From the beginning there has been no certainty except the sovereignty of God. Although I’ve learned more than I ever anticipated about cancer in general and my cancer in particular, I’m still only certain of the sovereignty of God—and of His love and His faithfulness.

What a fitting thought for December. God’s promises are real, but that reality is not predictable. I can’t figure out this cancer or predict the outcome, and I can’t imagine what God intends for me with this experience; however, none of those things matter. I can know that He loves me, and I can rest in that love without knowing the details. What Isaiah records God as saying of Israel is true of me also: “Fear not, for I have redeemed you; I have called you by name, you are mine” Isaiah 43:1). I am redeemed; I am called by name; I am His. What a reality!

“I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.” (Psalm 9:1)


Trial 3 Cycle 1 Day 1 August 25, 2014

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The more things change, the more they remain the same.

I guess I’m more familiar with the process by now after 1 year of clinical trials at Sarah Cannon. I know how to pack my day bag, to dress for EKG and port and blood-draw accessibility, and to wait through the day (and often evening). I’m actually at peace on cycle 1 day 1, unlike how I am in the few days leading up to any new trial. Of course, that’s how I anticipate any big event: going over all of the details and hoping I haven’t forgotten anything big. Then I wake up extremely early and feel God settle me down.

My friend Sue picked me up at 6:10 AM, and we were off. First day of a trial takes place in a separate room where I can be carefully monitored as the timetable begins. It’s been a long time since I had Benadryl as a pre-med, and so I was surprised about (but also appreciative of) being asleep from 11:30-3:30. Then comes a long 5-hr waiting period of blood draws and observations to see how my body is processing the study drug.

Everyone at Sarah Cannon is professional and personal and encouraging, and I will leave with documents for everything. This week will be busy because I have labs for the next 3 days and other appts for the next 3 weeks. Cycle 2 will be much the same, and then we’ll see how the treatment is going when scans are ordered at the end of two cycles. If I’m responding well, beginning with cycle 3 in about 6 weeks I’ll have only day 1 on my schedule with no other appointments in between those first days of each cycle. That will be nice.

Also, after my initial diagnosis 2.5 years ago, I’m getting better at asking questions and understanding answers. While my cancer remains weird (my word), it is becoming easier for me to grasp, I think. For some reason, the cancer cells have decided to make my lymph system, particularly the nodes, their home. The good thing is that they have been content to stay in the nodes; the not-so-good thing is that there are lymph nodes throughout the body. When I am receiving some kind of treatment (with a chemo element), the cells can be managed and the C-125 marker diminishes to within a normal range. When I’m not on a treatment or when the cancer cells decide they have the power to block treatment, the tumors grow and/or spread, and the marker rises. Managing this process with the right combination of drugs requires tremendous knowledge and skill, and I am blessed to have the resource of a world-class facility in Nashville like Sarah Cannon Research Institute, a place that does all of this so very well. What a gift from the Lord SCRI and its people are to me!

And after 2.5 years, I’m learning how much easier life is for me when I breathe in and out, when I stay in the moment and be thankful, and when I don’t run ahead of myself. I find it’s also easier to listen and respond to the signals my body gives me because they seem clearer at times now. You may not realize this, but other than the large tumor in my neck (the place that was radiated) I have no pain or discomfort from the cancer, just from the treatment—but the treatment is what keeps the cancer in check. It’s a circle to be sure, but not a vicious cycle; the more things change, the more they remain the same. God is here; I am not alone.

Hearing the still, small voice of God is not a lesson learned once and then remembered for always. It’s a daily surrender that God’s people experience every moment. Bottom line is that I’m doing okay. I keep going back to the beginning, and I’m confident that none of this depends upon my input.That definitely is a relief!

Right now I’m waiting for the final blood draws at 6:14 and 8:14 PM and then James will drive me home. Benadryl means that I can’t drive, so that’s another decision I don’t have to make. It’s quiet here on the Drug Development Unit on the 2nd floor, and God has been calling to my mind how much I have to be thankful for. I pray that I can be faithful in the moment, that I can trust Him with the details, and that I will express my gratitude for those near and far who are praying and caring.

May you enjoy the last week of August and find rest in your moments.


cycle 5 April 18, 2014

Finally on Monday, April 14, I received the 5th treatment of the study drug. I was two weeks out from the optimal range, but then I have never been in the optimal range. Platelets were still low (88,000); however, an amendment to the trial protocol lowered the threshold to 75,000, so I could have treatment. Plus, my doctor decided to hold the carbopatin chemo drug as that’s been the culprit in the lower platelet counts.

That meant a much shorter infusion time (30 min) because there are no pre-meds in the protocol for the study drug. Still, my day was a long one: I arrived at 8:15 and left at 3. Why, you wonder? The drug I’m taking is one that’s in a trial and not yet approved by the FDA (although the study itself is approved), and checking and rechecking of numbers and requirements are involved to ensure adherence with the trial directives. The procedure can’t be rushed, and that’s good for everyone. Besides, now that I’m used to the process, I understand that the wait is necessary, and I’m impressed with the professionalism of the oncology staff at Sarah Cannon Research Institute. I never feel forgotten because someone is always keeping me updated.

I have one more treatment in this 6-cycle trial. I can’t wait to see what happens next, but I’m told that I can continue with the study drug since I’ve had such good results. For that I’m thankful and I pray for continued good results.

Praise God from whom all blessings flow….