Hurry Up and Wait

It has been three weeks since Jonathan's diagnosis. It feels like it has been much longer than that. From the first inkling of something being not quite right, Jonathan has been fast and aggressive.  He sought a doctor's advice on his own accord, bucking the typical dude stereotype of avoiding the doctor until his wife's nagging drives him to action. He scheduled his recommended ultrasound and CT scan for the next day, making the time from doctor's visit to diagnosis only about 10 days. His diagnosis came on a Friday, we were at the oncologist on Tuesday and in surgery the following Friday. From what we can gather about the typical testicular cancer experience, this is a pretty remarkable timeline.

Apparently cancer did not get the memo that it was messing with a guy who has run marathons, climbed mountains, conquered an MBA and an OD, had three kids in five years, works his tail off at a thriving optometry practice, and deals with a firecracker of a wife on a daily basis. Jonathan Poe may be quiet, calm, and collected, but he is the most detail-oriented, determined, dedicated man I know. Once he sets his sights on something, he puts the pedal to the metal and gets to work. It may look unassuming on the surface, but deep down it is fierce. Three weeks ago he set his mind to eradicate cancer from his body, and it is going down. Cancer picked the wrong dude.

All that to say, we have crammed a lot of life into three weeks. Two weeks ago Jonathan had a successful and uneventful orchiectomy, the first step in his treatment process. It was an outpatient procedure and the recovery went very well.  Thanks to our previously scheduled beach vacation, Jonathan already had the following week off, which allowed plenty of time to rest. He started the weekend unable to get up and down on his own, but he was diligent to do a little bit of movement each day and by the end of the week was fully mobile again, albeit a bit sore and slow. He returned to work this week, which was great for his mental state as he was tired of being the patient and needed the productivity to keep his mind off of waiting for pathology results.  The boys think his abdominal incision is totally awesome. :)

I have to give a HUGE thank you to Todd, Jonathan's brother, who spent the weekend after surgery in our home. He was Jonathan's primary caregiver that weekend, sleeping on an air mattress next to his bed, waking up every four hours to give him pain meds, lifting his dead weight in and out of his bed and chair all day and night. And in the midst of all that he managed to treat our contaminated water well, which is a tedious job (Long story, but due to flooding we found out the day before surgery that our water was not safe to drink! Two weeks later, today, we finally got the all clear.), rehung my living room draperies that the boys pulled down while we were at the hospital, and serve as comedian, counselor, and confidant to Jonathan in a way that only a brother can do. Todd has a very full life and a demanding work and academic load, so for him to sacrifice an entire weekend to selflessly serve our family was a treasured gift. It's funny, I have not been very teary or emotional in the last three weeks, largely because I am very much in adrenaline mode to get our family through this, but when Todd got to the front door with his bags packed on Sunday night I burst into tears and cried like a baby! Todd's presence was such a help and comfort to us and I was not ready to break up our little cocoon! Another big thank you goes out to their wonderful parents who took our big boys for the weekend and showed them a fabulous time of riding the mall escalator, eating at Chicfila, and making their first trip to the Lego store!

So many people have been so kind to check in and ask if we have any news. Yes and no. We do have some news, but we are still in a waiting period. We are learning that cancer diagnosis and treatment are a series of steps, each contingent on the one before, with periods of waiting in between. All that to say, we can't always answer your questions, especially about timing, because we don't know the answers either! That said, here are the facts:

Jonathan's primary tumor was 95% embryonal carcinoma and 5% yolk sac carcinoma (feel free to Google those terms; the American Cancer Society provides helpful information on specific tumor types). The tumor had clear margins and no evidence of invasiveness beyond the confines of the tumor. That is good news. This type of tumor is responsive to chemotherapy. Also good news. However, Jonathan's abdominal CT scan before surgery did confirm presence of disease in the retroperitoneal lymph nodes (think lower back area). Essentially, cancer cells other than the tumor itself travel through the lymphatic system and spread first to the retroperitoneum.

There are two big pieces of information that we are waiting on before moving forward:
1) Blood Tumor Markers. Hormone levels in your blood indicate what the cancer is up to. Jonathan had blood work done on the day of diagnosis to establish a base line and had more done today. We need to see what those hormone levels are doing. Do they return to normal? Do they remain elevated? Those tumor marker numbers play into how they stage his cancer and which chemotherapy path they choose.
2) Chest CT Scan. Jonathan had an abdominal CT scan that confirmed disease, but he only had a chest X-Ray. The X-ray showed that his lungs were clear, but our doctor ordered a chest CT scan to get a better look. Right now we know his cancer is at least stage two, but if disease shows up on the chest CT he will be stage three. This matters more for the diagnostic staging process, as treatment does not change either way.

On the 24th he will have that chest CT done and we will have our first meeting with his medical oncologist, the physician who oversees the chemotherapy treatment plan. A friend compared this process to Jonathan's urology oncologist, a surgeon, being a quarterback who passes the ball to a receiver who is going to do his thing. The quarterback is still calling the shots and overseeing the big picture of the game plan, but he's handing off the next step of the play to the appropriate expert. At that point we will have the blood work back and the CT scan and can choose the most appropriate regimen of chemotherapy.

During and after chemotherapy they will continue to monitor those blood tumor markers and do another CT scan. At that point we will be able to determine if any residual disease remains and whether further surgery is necessary. That surgery is called a Retroperitoneal Lymph Node Dissection (RPLND). It is a doozy of an operation with at least a 5 day hospital stay and 6-8 week recovery. Feel free to Google that one too. We hope to avoid that possibility, but obviously Jonathan has his game face on for that if it is what it takes to be DONE with this disease and not have to constantly wonder if cancer is still there or coming back.

So, that is what we know. Here are some specific ways to pray:

• This is my big bold prayer request: that Jonathan will never have to have the RPLND surgery. I want that chemotherapy to wipe out every trace of disease so that surgery is unnecessary. 
• That the chest CT scan will be clear. 
• That the correct plan for chemotherapy would be clear
• That Jonathan would respond well to chemotherapy, both in terms of disease eradication and in terms of side effects. May he have minimal nausea and fatigue and be able to work through his treatment.
• That Jonathan would continue to feel peace and contentment. Jonathan is naturally bent toward anxiety, and that has obviously been a struggle in the last few weeks. Several of you have been praying specifically for that and the latter half of this week he has felt such peace and absence of fear. 
• That the logistics of Jonathan's work schedule and treatment would fall into place and that he would be able to continue seeing patients throughout this process. Optometrists don't get paid if they aren't seeing patients, which is one factor, but more than that working is just good for Jonathan's spirits. He has an incredible team and they are so supportive. Going to work is good for Jonathan. 
• That we would continue to get good rest. The boys have slept well the last few nights and it has been such a gift!
• That I would have strength, endurance, patience, and a servant's heart as I care for these four guys of mine. I thought I knew how lucky I was to have an equal partner in matters of parenting and housekeeping, but removing his help from the picture shows how much I rely on our partnership in this crazy life! 

Finally, but most importantly, THANK YOU! Thank you for your texts, phone calls, and messages, for your cards, for the yard work, for the creative and thoughtful deliveries that show up on our doorsteps at just the right moment, for the delicious meals, for the visits, and for caring for our children. Someday I will get all caught up on thank you notes and respond to every email, but until then, please know how absolutely grateful we are for the love we have been shown. Seriously, we have been blown away by the generosity and care of our people. 

We are most grateful, however, for your prayers. There is just no way that we should be functioning as well as we are during this difficult time. Your prayers are quite literally holding us up throughout each day. There are days when I don't even know what or how to pray, and I can rest knowing that someone, somewhere is covering our family in prayer, articulating the things that we are longing for and needing when all we can say is, "Jesus!" (My friend Audrey sent me a precious email with this jewel: "It's ok to be mad, and it's ok to not know what to pray--ask us to pray for it." What freedom I have found in those words!).

In the last weeks I've heard people say I'm "so strong" and "super woman" and that Jonathan and I have such strong faith. Well folks, I'm glad we've got you fooled. ;) But really, we are so so weak. We are sinners. We are doubters. On Sunday Jonathan felt so mad he could hardly sing or pray. Last Thursday we were totally over being patient and caregiver and were snippy and snarky with each other until we finally had to separate for the afternoon! We lose our cool with our kids, complain about impositions to our own desires, and cling to our perceived rights far too tightly. It is a daily, hourly, momentary choice to bring our junk to the feet of Jesus, to confess our need for him, and to keep pressing forward. We don't always submit to that process. But when we do--heck, even when we don't--He is faithful to us. He provides for our needs. He comforts and quiets our hearts. He provides strength and energy beyond what anyone should expect to have on three hours of sleep and relentless days at home with three little boys. He fills us with his Holy Spirit and allows us to be used by him for his glory in spite of our failings. So we are not strong and faithful. Jesus is strong and faithful, and we are just trying to abide in him and be more like him at the end of all of this.