C1D1
“Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.” (Matthew 6:34, NKJ).
Today is C1D1 for me. That stands for “Cycle 1, Day 1,” the first day of the first cycle of a 14-month, clinical trial to treat recurrent chronic lymphocytic leukemia (CLL). CLL is a blood cancer caused by a proliferation of white blood cells called lymphocytes. Healthy lymphocytes produce antibodies that help our bodies fight off infections. Some years ago one of my lymphocytes acquired mutations that caused it to divide out of control. As a result my bone marrow and lymphatic system are crowded with non-functional descendants of that original aberrant lymphocyte. This makes it difficult for my body to make healthy blood cells, and, a result, my immune system is weakened and I am anemic. If left untreated, those cancerous white blood cells will destroy my immune system and my ability to get oxygen to my cells.
I was first diagnosed with CLL back in 2013 and was able to delay treatment for about eight months. Since CLL is considered incurable (those mutated lymphocytes are long-lived and able to hide out very well) and because it is slower growing than the more commonly-known acute leukemias which often strike children, doctors often take a “watch and wait” approach to treating CLL. Knowing that the disease is going to come back after it is treated means they do not want to use up various treatment options more quickly than necessary. CLL is the most common form of leukemia diagnosed in adults. The median age at diagnosis is around 70 and often times the disease progresses slowly enough that treatment is not even needed. As is the case with virtually all cancers, there are more and less aggressive varieties. Cancer is a disease of cells. Since there are over 200 cell types and we each have some unique features in our DNA, every cancer is unique at some level. The version of CLL that I have is a faster-growing variety, which is why, I suppose, that I got it while in my late 40s.
When I began treatment in the fall of 2013, my therapy was a mixture of three drugs, two of which were standard chemotherapy agents that are especially effective at killing rapidly dividing cells in the bone marrow. The third drug was one of the newer generation targeted therapies that more particularly attacked the cancerous lymphocytes. After six months of treatment, the leukemia went into remission, which in this cases means that I was no longer having symptoms; it did not mean that the cancer was gone. In fact a very sensitive test indicated that of all the lymphocytes in my body, only 0.3% of them were cancerous. That’s only three bad cells per thousand, which was a huge improvement but still not zero percent. The cancer was still there, and it would eventually start coming back.
I’ve lived the last two and a half years with very few clinical problems and am grateful for the fact that I’ve felt well and been able to work, worship and serve God and my family. In July of this year, I learned that the leukemia had returned to the point where it must be dealt with again. Thankfully, in the providence of God, there are several new, FDA-approved drugs available that do not have the side-effects of standard chemotherapy. After weighing the options, it seemed best to us to enter a clinical trial being run at The James Comprehensive Cancer Center at The Ohio State University Medical Center in Columbus, OH. The trial will use a combination of three new drugs, phased in over the next three months and will continue for 14 months. Because it is a trial, I have to travel to Columbus about 23 times over the next year. Some cycles require weekly visits of up to two days in length and some cycles only require a single, monthly visit.
When you sign up for a trial, they put your start date into an Excel spreadsheet and it pops out the entire schedule for your protocol. So my life is divided into 14 distinct cycles of four weeks each. Today is C1D1 and tomorrow will be C1D2. I spent nine and a half hours in the OSU cancer hospital today and am likely to spend seven hours there tomorrow. It’s slightly unnerving to be able to look at a spreadsheet that lays out your life (at least one aspect of it) for the next year. There are some things I can see on my schedule that I am definitely not going to enjoy. On C9D1, for example, I have to have another bone marrow biopsy done. Most people will never have the experience of getting a bone marrow biopsy. Suffice it to say that you are not missing anything! A long needle takes an aspirate from the bone marrow and then something that looks like a mini-auger for taking core samples pulls a piece of bone out of your hip. It’s not pleasant no matter how it’s done. There are other aspects about which I am not excited but by far the biggest challenge will be the constant travel to Columbus, OH – 500 miles round-trip from Bloomington. How am I going to keep up with my classes at IU? With my church responsibilities? With my family and friends? I am really not exactly sure, but I can say with wonderful gratefulness that I am not all that worried about it.
Jesus told us not to worry about tomorrow for tomorrow has enough problems of its own (Matthew 6:34). Sometimes it is hard to do that – especially when an entire year of tomorrows is all written down for you on a spreadsheet. Our congregation has been studying the book of Romans in our morning worship. Last week I preached on Romans 8:31-39. I’ve carried those words from God with me into C1D1 and it has helped immensely:
“Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? 36 As it is written: ‘For Your sake we are killed all day long; We are accounted as sheep for the slaughter.’ 37 Yet in all these things we are more than conquerors through Him who loved us. 38 For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, 39 nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord” (Romans 8:35-39, NKJ).
Paul had experienced many things far worse than CLL and he was able to say that he was fully convinced that nothing (and he meant, absolutely nothing) could separate him from the love of God in Christ Jesus. This truth has helped me put tomorrow in His hands and to try as I am able, in His strength, to be faithful today.
And everywhere around me I’ve been given tokens of that invincible love of God for His people. The skillful and caring doctors and nurses who have treated me – this time and last; the ingenuity and technology that have led to better treatment options; my colleagues at Indiana University – ready at a moment’s notice to step in for me if needed; the Christian friends praying diligently and offering to give me rides over to Columbus, baking cakes, watching after my children; the relatives ready to drop everything and do whatever is needed no matter how inconvenient; my wife whose devotion and care I cannot begin to describe even though I know how hard this is for her; the Word of God with its precious promises that seem so real in the midst of life’s trials; and above all, a Savior who knows what it means to suffer but who did it alone and outcast so that I could be redeemed and never feel that total isolation from God and others that He did.
So I’m trying not to worry about C9D1 or C3D1 (that’s a doozy) or any of the other days but entrusting those to the Lord as I get ready for C1D2 tomorrow. Of course that does not mean I don’t plan and make arrangements for the future. But it does mean that in Christ, from whose love I can never be separated, I leave the ultimate outcomes in His hands. Really, for all of you who are in Christ, today is C1D1.