The Halfway Point

It is difficult to sum up the last six weeks, to articulate the roller coaster of chemotherapy. There have been many sweet, normal, everyday moments, yet amongst those joys have also been the darkest days of our lives to date. That is the paradox of living life with cancer when you also have three children under five: with small children, you are guaranteed joy and laughter even in the midst of suffering. You are guaranteed a somewhat normal rhythm to your life because you cannot abandon the daily routines even when you feel like the world is crumbling around you and you want to crawl back under the covers. There are days when we join them in the tears and tantrums, and when our anxieties and fears are amplified due to our concerns for the boys. Despite the added challenges they bring, our little men have been the best medicine and have brought so much light to the darkness and levity to the heaviness.

Jonathan has completed the first two cycles of his treatment. As I type, he is receiving his second infusion of Cycle 3. Being halfway through is bittersweet. It is a marker to celebrate, and yet the thought of doing the last six weeks over again is daunting. Chemotherapy has not been easy on Jonathan; physically, mentally, emotionally, and spiritually, he is being being brought to the end of himself. It is a terrifying thing to walk into an infusion center, surrounded by many very visibly sick people, and get hooked up to a cocktail of drugs that you know are going to make you miserable on their way to saving your life. Reality hits hard and is joined by worry and fear, making that first week a constant mental battle. It seems the greatest battle against cancer is for your mind and heart. It is still a little too fresh to really wrap my head around or put words to the experiences of that first week, but I can say for certain that we experienced the darkest, most hopeless moments of our lives in those days. When you're hooked up to a chemotherapy drip or lying awake in the middle of the night, it doesn't matter that so many people have it far worse or that your eventual prognosis is pretty positive. It is still cancer, and it is still hard. Neither of us has ever been so completely dependent on Jesus for our moment-to-moment sustenance. It is the best possible place to be, and beautiful as it is painful.

(We are so grateful to the help of a wonderful counselor who helped us walk through those early weeks together. If you ever find yourself dealing with a serious illness or challenge like this, start with counseling at the onset! We received that wise advice from one of our pastors and are so grateful, as that would never have crossed our minds on our own. We have a solid marriage and good communication skills, but this is by far the hardest thing we have ever done and we definitely can't do it on our own. Our visits to the counselor have been as important as our visits to his doctors!)

Thankfully, Jonathan turned a corner partway through Week 2 and started to feel a little more like himself. He returned to work, where he was greeted by an entire staff dressed in Team Poe t-shirts! We are so grateful for the Mid-Del Vision Source team and the incredible support they have shown to our entire family. Jonathan was able to work through Week 2 and 3, which has been such a gift. Remembering that who he is aside from being a cancer patient has been vital to his well being. His hair hung in there until Week 3 but finally the tingling scalp and shedding led him to bite the bullet and shave it all off. We both anticipated this being emotionally difficult, a visual sign of his illness, but it was no big deal! The boys helped shave Daddy's head, which they thought was super fun, and he looks so great with a shaved head that it has just been a nonissue. He particularly enjoys the way it has streamlined his morning routine: shower, deodorant, done! The day after he shaved his head he hollered at me from the bathroom for taking his hair gel and then seconds later dissolved in laughter when he realized that he wouldn't be needing the hair gel for quite some time!

Cycle 2 was much more physically difficult than the first. The side effects hit sooner, harder, and lasted longer. By the end of the first week he went about 48 hours where he hardly looked at or spoke to me; it took every ounce of concentration for him to just hang on and make it moment to moment. He was up vomiting in the night and had no relief from nausea during the day. He was sleepless but unable to watch television or read without amplifying his symptoms. His senses were on overdrive, making it impossible to be around the children. Even when on their best behavior, three little boys are just plain loud and busy. It was pretty miserable. By Wednesday the fog had cleared enough for him to head back to work, and once again he was able to work through Week 6. The last few weeks have brought beautiful, unseasonably cool weather to OKC, and being able to enjoy family time outside while Jonathan has felt well has been such a gift.

Last week Jonathan had a mid-treatment CT, followed by an appointment with his urology oncologist on Friday to discuss treatment thus far. The day before our appointment Jonathan's blood work was showing an elevated number that had us concerned that disease was spreading. To be going through the hell of chemotherapy and think that it might not be working was a terrible feeling. Thankfully, the CT showed the lymph nodes of the retroperotineum are indeed shrinking in size in response to the chemotherapy! Dr. Cookson also confirmed that the suspicious number (LDH, for all you medical types out there), fluctuates throughout treatment and is related to tissue turnover rather than tumor growth. Basically, cancer cells are dying and releasing LDH, leading to an elevated number. We were so thankful for this good news and encouragement as we go into the second half of treatment. One month after treatment ends, Jonathan will have a post-treatment CT and appointment with his urology oncologist in early November. At this visit we will determine whether the follow-up surgery (retroperotineal lymph node dissection) is necessary. If there is any question, Jonathan wants to do it. Surgery recovery sounds like a walk in the park compared to chemo. He is ready to kick this stuff once and for all and would rather deal with surgery and recovery now than have to do any of this junk ever again! Good riddance!

There was only one negative bit at that appointment. The CT showed that a blood clot has formed on the end of the port tube. Although his ability to receive infusions is not compromised, the possibility of that clot breaking off and entering his blood stream is very dangerous. We were initially told that he would have to have surgery to replace the port, which would delay treatment and just be a pain in the...well...a pain in the chest! To think of having a second surgery for a new port that will only be in use for six weeks was maddening! After spending all of Friday on countless phone calls and lots of prayers, we were relieved to find out that surgery would not be necessary but that Jonathan would have to take twice daily injections of a blood thinner. It is a bummer to add one more thing to the smorgasbord of drugs in Jonathan's system, but we are grateful to avoid surgery and a delay of treatment. I am fulfilling my missed calling of being a nurse by administering the injections, so we are once again taking our marriage to a new level of vulnerability and closeness!

We have been overwhelmed by the love and support of our family and friends. Our parents have cared for the boys and made it possible for me to attend each of Jonathan's appointments. From help with the boys to meal deliveries on each day of treatment, to outrageously generous gifts, we have been blown away by God's use of his people to provide for our needs. Time and time again God has prompted people near and far to help us in ways that have fulfilled specific needs of ours at the perfect moment. I am embarrassingly behind on thank you notes but hopefully one of these days I will manage to express our gratitude for the many people who have reached out to our family during this difficult season. It has been an incredible picture of how God uses the Body of Christ to meet our needs and make his presence and care known in a tangible way.

Please continue to pray for our family as we tackle this last half of treatment.

• Pray that Jonathan would have peace of mind and heart and that he would have a strong sense of God's nearness and love.
• Pray that Jonathan's side effects would be manageable during these last cycles.
• Pray that Jonathan would have energy, stamina, and focus on the days he works, and that he would be able to maximize his time with the boys on his "good" days. 
• Pray for the boys to feel secure and loved amid these unusual circumstances. 
• Pray for me to have strength, energy, and perseverance as I care for Jonathan and the boys. I am hanging in there and taking it one day at a time, thanks to lots of Jesus, lots of grace with myself, lots of coffee, a little Jazzercise (because nothing takes the edge off like busting a move and punching the air for an hour), and some great girlfriends.