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)


all good February 12, 2014

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On Monday my platelets were up to 112,000. The drug company approved my continuing the trial with cycles 3 and 4. The Carboplatin chemotherapy dosage was slightly reduced in an effort to slow down the sharp platelet drop after treatments. Tuesday and Wednesday have been back-to-back good days.

Most importantly, I have been keenly aware of God’s gifts of hope, of His continued presence, and of blessings that come with patience. My times at Sarah Cannon Research Institute regularly consist of waiting for everything—for lab results, for approvals, for drugs to be mixed, and for infusions to start. I can do nothing to move things along because everything takes time. Every person I come in contact with is doing a necessary job with a professional and compassionate attitude. I’ve learned that waiting is part of the process, and if I can rest in that waiting, joy is the result.

Oh, I know that this battle isn’t over and that God will continue to use this experience to accomplish His purpose in my life. There will be ups and downs, good news and not-so-good news. Right now, though, I am thankful that this week has been good, and I know that I’m where I am supposed to be. I will choose to trust Him with what lies ahead, and I will wait.

I wait for the Lord, my whole being waits, and in his word I put my hope. (Psalm 130:5)


Scan results! February 3, 2014

Today scan results revealed no new growth in the tumors—and three of those measured smaller than they were almost ten weeks ago. While no growth was the hope after two cycles of the trial drugs, the reduction in size of the three largest tumors was an unexpected gift.

My platelets are not with the program yet, however, and they remain steady at 57,000.  I’ll wait another week to see if they reach the 100,000 mark so I can begin cycle 3. When that happens, the study drug amount can be slightly reduced, which should help the platelets recover more quickly in the future.

I feel very grateful and cautiously optimistic right now. At the same time I remind myself that my hope is not in the trial or the results but in the One Who Heals. I must keep my focus on seeing and trusting God in the moment. While it may sound trite, the reality is that focusing on results—and not on Him—sets me up for disaster. I struggle with fear and despair if I believe He’s with me only when the results are good. In the words of Paul, “But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently” (1 Corinthians 8:24-25).

Therefore, I will wait and hope and believe that what God is doing in me through this cancer is part of the story of my life, and I will “praise God from Whom all blessings flow….”


schedule change January 29, 2014

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When someone participates in a clinical trial, many people regularly review the protocol for the study and the data gathered from the patient to be sure that everything falls within the requirements. This morning I received a call to reschedule scans and the return visit for results, both of which had been set outside the 21-day cycle of the study. Scans are now this Friday, January 31, with the oncologist visit on Monday, February 3.

Moving things up a week is definitely good news because waiting can be hard. I’m not anxious but do want to give an update about the schedule change. I am grateful for your prayers.


Dark clouds and a glimmer of light January 7, 2014

I couldn’t write anything yesterday after my Sarah Cannon appointment, just as I haven’t been able to write anything since the first treatment of this new study drug on December 16. I had to concentrate on getting out of bed, on not falling apart, on preparing for Christmas, and on trusting that God was still holding on to me. Some days I was successful, and some days I was not. Yesterday I almost was not, at least not until the end of the day. More on that later.

Day 1 (Dec 16) of the new study drug, which also includes a carbopatin chemotherapy drug infusion, was good. I had no reaction to the new meds, and my platelet count that day was 107,000, which was a bit above the 100,000 threshold for receiving the drug. Then each Monday after that, the numbers dropped—93,000 on day 8 (Dec 23) and then an awful 69,000 on day 15 (Dec 30). I knew that I’d have to be back at 100 by yesterday, and I also knew that the chances of that happening were not strong, based on my previous platelet drops with other chemotherapy drugs.

I have spent the days since Thanksgiving wondering what was happening inside and what would happen if I couldn’t continue treatment as scheduled. I wondered if my fears were responsible for how awful I felt, for the recurring nausea and intestinal struggles, for the feelings that alternated between panic and numbness. With my mind, I knew that fear was probably a factor in my physical struggles, but my emotions were so fragile that I also knew that they had a part in how I felt. I took things slowly, tried to interact normally, decorated for Christmas intentionally, and cried inconsolably every time I was alone. I couldn’t face the fact that this might take a turn that would not be what I had hoped. The only time I had felt like this was the first weekend of my diagnosis, when I came face-to-face with my mortality. I was back at that point again, and this time I knew enough about what I faced to be paralyzed with fear.

Yesterday my platelets were 81,000, up 12,000 but still short of the magic 100 mark. On Saturday a precious, godly woman whom I knew through BA had died of a rare and aggressive cancer diagnosed only eight months ago, and I felt her loss as if we were best friends. I have prayed for her since her diagnosis, seen her recently in the halls at Sarah Cannon, and can only imagine how much her family is grieving. I went home yesterday to wait another week for the platelets to rebound, and I truly felt as if I couldn’t go on.

Then mid-afternoon, after waking from a deep sleep, I learned the test results of my C-125 marker, which had been checked for the first time since December 2. At that time, I was devastated to discover that the number was 553, about the same as when I was first diagnosed. That number was a prime reason my doctor wanted me in this study since this trial drug directly targets the C-125 marker.

My C-125 marker is now 185. Three weeks after one infusion with the drug, the number is down significantly. Right now, all that means is that the trial drug seems to be doing what it is supposed to do—to target the C-125 marker; we’ll know if it is also reducing the growth and the spread of the tumors after the scans scheduled three weeks after the second treatment. I can’t jump ahead and decide that I know what this means; every time I do that, it’s a mistake. It’s too soon to say this is a turning point in the treatment of my cancer.


My C-125 marker was 553 and now is 185.

Yesterday I saw the news as a break in the roiling clouds that have surrounded me, a glimmer of light in darkness, a reminder of God’s presence. He is still here, still present in the midst of my circumstances, still true to His promise to never leave me or forsake me, still the only hope I have. He is still my healer whether that healing comes this side of heaven or not. I keep writing the same thing because I keep needing to remind myself of its truth. I just don’t get it in a way that sticks with me. Maybe the time will come when I won’t need the reminders, but I am so thankful that He continues to give me glimpses of His glory.

When I told another dear friend last weekend that I was struggling to keep focused, she told me that she too battled fear in her cancer diagnosis and treatment. She said that the words of the hymn, “Precious Lord, Take My Hand,” have been in her heart almost every moment of every day for years now. This hymn helped her because it didn’t say not to fear. Since she couldn’t get rid of the fear, she decided to live with it but to do so holding His hand.

The words of that hymn make perfect sense to me too, for I have seen the sweet gift that comes in a glimmer of light:

Precious Lord, take my hand
Lead me on,
Let me stand/
I’m tired, I am weak, I am worn
Through the storm, through the night
Lead me on to the light
Take my hand, precious Lord, lead me home.

When my way grows drear, precious Lord, linger near.
When my life is almost gone
Hear my cry,
Hear my call.
Hold my hand lest I fall.
Take my hand, precious Lord, lead me home.

When the darkness appears and the night draws near
And the day is past and gone
At the river I stand
Guide my feet,
Hold my hand.
Take my hand, precious Lord, lead me home.

Precious Lord, take my hand.
Lead me on,
Let me stand.
I am tired, I am weak, I am worn
Through the storm, through the night
Lead me on to the light
Take my hand, precious Lord, lead me home.

Whatever I fear, be the situation a tiny difficulty or a larger crisis, He will lead me on—and because He leads me on, I can stand by holding His hand.

(and did I mention that my C-125 is 185? Whoo hoo!)