Trial 3 Cycle 1 Day 1 August 25, 2014

Filed under: Uncategorized — cindytripp @ 6:10 pm
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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.


pressing forward to trial #3 August 18, 2014

Filed under: Uncategorized — cindytripp @ 7:06 pm

I’m a week out of radiation, a week with more noticeable side effects (“sunburned esophagus”  and extreme fatigue) yet ones that peaked last week and are almost gone today. My neck will hurt for awhile, however, and it will be a few weeks before the scans will pick up how much the tumor in my neck has shrunk.

Now I’m looking ahead to the next trial. Later this week I’ll have baseline scans and also an ophthalmology appointment since a cornea issue could be a side effect. The first day (Monday, Aug 25) will be a long one, but the cycles fall into a regular pattern of 21-day cycles with scans after every 2 cycles. I’ll remain on the drug as long as it is effective, which translates as no growth. Side effects are the usual ones, but I won’t know how I’ll react to the drug until I begin.

The study drug is considered a “smart bomb.” The molecules contain the antibody with a bit of chemo in the tail. Imagine your hands coming together and your fingers interlocking; that’s the cancer cell and the antibody. Once they join, the cancer cell opens up (base of hands stays together and fingers open up like a flower), and the chemo part attacks the center of the cancer cell and hopefully destroys it. Very interesting science, isn’t it? Dr. Burris’s research nurse Dee explained it just that way today, and it makes sense to me; of course, any errors in how I explained this are obviously mine.

Tomorrow I should learn what my C-125 marker is now. On July 28 it was 143, up from 94 on July 7, and 49 on June 16.  The number is not heading in the right direction, and that’s why I’m starting a new trial. By the way, the normal range is under 30.

Although it takes a daily and often a moment-by-moment choice, I’m trying to hold on to the present and trying not to look ahead. I almost feel detached from reality at times because otherwise I probably wouldn’t be able to come out from under the covers. As always, though, God gives me encouragement through those I come in contact with every day, in person and by email, and I am reminded that His truth is the only truth that gives hope.

I believe that everything that happens to me is not a surprise to the Lord, and because of that I believe that He prepares the way before me. He is sovereign over my life, and I can rest in whatever the outcome may be.

Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand; when I awake, I am still with you. (Psalm 139:16-18)