My husband tends to be very physically...intense. What he lacks in frequency of exercise, he makes up for in effort. Which means that rather than create a graduated regime of activity, he will take a notion to exercise and immediately go bike for 3 hours in the mountains. Rather than simply join in the game of middle school soccer, he'll take on all the kids singlehandedly. It also applies to physical labor. It's why he gets covered in mud and grime whenever he does anything even near dirt....he's just, really INTO whatever he does. So it wasn't anything new or surprising when over the summer he would mention a pain in his leg...right near the quad muscle. We both chalked it up to an over zealous bike ride or lifting a hay bale goofy or general stiffness from digging footings.
By fall though, the pain seemed to be more frequent...and not at all connected to any strenuous activity. Still, though, it was more an annoyance than anything. It wasn't really enough to impede his behavior or cause much concern.
I knew it was getting to be a bigger deal when he started preaching sitting down. If you've seen him preach you know he's pretty mobile...pacing a lot and what not. My boss is married to an orthopedic surgeon, and one day in the office the topic of random bumps and lumps and pains came up and I mentioned Jeff's leg pain. She said she'd have to ask her husband about it.
The week before Thanksgiving her husband encouraged Jeff to come in and get an x-ray. This revealed a tumor, but didn't give much information. Our doctor friend didn't seem too concerned, said he'd seen lots of benign tumors and that this was, in all likelihood, one of them. Still, he wanted to get a better look, because if it was causing pain it was probably going to need to come out, so he ordered an MRI for the following Monday.
We weren't too concerned, partly because HE wasn't very concerned, and partly because we had quite a bit going on. My mom was flying in to spend Thanksgiving with us, so we made a trip to Spokane to pick her up and spent some time shopping while we were at it. Besides, it gave Jeff ample opportunities to make jokes about them finding a spinal column and hair in there. ("yes. it was my twin.")
We went for the MRI, a less than pleasant experience for Jeff. Turns out he doesn't mind at all climbing into a teeny tiny crawl space that is dark and dirty looking for mice or snakes...but something about the teeny tiny space of the MRI tube was unsettling. That the procedure took about twice as long as they had told us made us wonder, but of course they couldn't give any information until our doctor had seen the results. With it being the week of Thanksgiving we didn't expect to hear anything until the following week.
That Wednesday afternoon were beginning the Christmas decorating...which is a several day process for us. Jeff was busy winding hundreds of lights on our tree, and we were listening to Christmas music when our doctor friend called us...and entirely different tone in his voice. The MRI had shown the tumor to be growing into (or possibly out of) the femur. That didn't mean much to us, but to our orthopedic surgeon friend it suggested an aggressive tumor...making it far less likely that it was benign.
He told us he wasn't comfortable doing a biopsy himself because of the unique placement and the precision that would be required to get into the bone to get a proper biopsy. He was referring us to a colleague of his in Spokane. His specialty? Orthopedic Oncologist. (gulp) He gave us this doctor's cell phone number (double gulp) which we were to call on Sunday night (office hours had passed by this point and it was officially the holiday weekend) and make an appointment for Monday (triple gulp).
It was all moving so fast it seemed and we were trying to make sense of all the information we'd been given. Jeff asked "So, could this still be benign?" and our friend paused, then said weakly, "well...it COULD be....but..." which we took to mean "No." (quadruple gulp).
It's so weird how things like this actually go down. When you picture getting these types of calls, with this type of news...time always stops and you take a good amount of time to process. But here it was, the night before Thanksgiving. We had our kids and my mom in the next room laughing and talking. We had plans to meet my in-laws at Locomotive park to look at the lights. I had food to make for dinner the next day. Silas wanted supper. It was a strange blend of the mundane ordinary sort of night with an 'our life just changed' sort of night.
We decided not to talk to the kids right away, they knew Jeff had some pain and that he'd had some tests. But as I said there were plans already made and we wanted to take the time to fully explain and answer their questions. We told my mom, and discretely told Jeff's parents at Locomotive park. Then for some strange reason we all went to Starbucks and sat around uncomfortably...not knowing what to say, all the adult minds consumed with the same thing, while the children chattering happily about the lights and Christmas and their favorite cookies.
When it was time to talk to the kids we wondered how to best handle it. One of our cardinal rules in parenting is that we are dedicated to never be less than truthful with our kids. This sounds easier than it is, I think. Because sometimes it means we've had to say things like "Yes, this is going to hurt very much." when we'd rather say "It won't be that bad." or "No, I can't promise that nothing bad will happen to me or dad or anyone else you love." when we'd rather say "Everything will always be okay, now go back to sleep." We've tried to be wise about not over burdening them with information they won't be able to process until they are older...but it's a fine line. In this instance, we knew that it was "big enough" that they would hear it being talked about, and we wanted to make sure that they heard it from us before they heard it from someone else.
So we sat them down, and basically told them what we knew...pointing out that God was in control...there was no reason to fear...blah blah blah. When we finished our shpiel the response we saw was typical for our two older children. One of them said "Okay." and then asked to resume their activity. The other...well, the chin began to tremble a bit. Then for whatever reason I had to leave, can't remember if it was a phone call or what, but I left the room, and...after dealing with whatever had called me from the room, gave Silas a bath. When it was over, I heard a child sobbing in their dad's arms.
I immediately knew which child, not from the sounds... just from knowing this child for over a decade. I never stop being amazed at how two children with the same dna and the same parents who are even practically the same age can be so different. This child feels things a bit deeper than their sibling. Is more prone to anxiety and fear. Jeff talked and prayed the kid through it, and they went to bed that night feeling better, but as the days went on this child seemed "far away" to their teachers and had unexplained bouts of physical sickness. My heart broke for this child, and I prayed that God would comfort the little heart in whatever the future held.
The next day was Thanksgiving. A very strange Thanksgiving, for many reasons. Of course the biggest reason was because one of the dinner guests was a probably malignant leg tumor that no one had invited. But to a lesser degree it was just really quiet. Just us, my mom, and Jeff's parents. We didn't even need to put the leaf in the table. After the feast we watched My Big Fat Greek Wedding, probably because Jeff had made so many twin jokes. We found out via twitter that Matt Chandler, one of the men on the board of Acts 29, the church planting group we're apart of, (and someone we felt we knew because we listened to his podcast religiously) had a seizure and an MRI found a mass in his brain, but they didn't know what it was. It felt weird knowing another family was facing the same kind of circumstances on the same day.
The next couple of days are mostly blurry. We were mostly trying to prepare for being away. We knew we would see the Orthopedic Oncologist on Monday morning, and that they would likely want to take some immediate action, but had no idea what to plan for. So I spent some time at the school getting things prepared for a sub, and did laundry so the kids would have clean uniforms, and arranged rides for them to and from school. We packed bags to go and left lists for my mom who would be staying with the kids. Again, this odd mix of the completely mundane (reminding the kids that the trash pick up day is Monday) and the life-changing (wondering if my sub would be for the week or the rest of the year).
Monday morning came, we kissed the kids good-bye and got in the car to leave. In the busy-ness of the weekend with family and long lists of things to do this was the first time we'd really had to talk, just the two of us. We compared notes and found that we were both thinking pretty much the same thing...that Jeff had cancer. Surprisingly, we also discovered that we were both at peace. Or maybe not surprisingly. It seems that the times people find themselves at peace are the times when they begin to grasp how little control they exercise over much of their future. Either way, it was nice to know we were both on the same page...sort of "It's our turn to face difficulty, but we know God is in control and that He is good, so let's just take it from here."
I don't mean to imply that there were never moments in that long 4.5 day weekend of panic. There were. Mostly in the middle of the night when there was no activity to distract the mind. Brains go to dark places in those moments and the fear would prickle its way up the back of the neck and wrap its tentacles around your head asking all the fearsome questions. But I can honestly say that there was never a moment when either of us felt cheated or misused by God. And in the daylight hours we knew He would carry us on whichever path He was asking us to travel.
It was also nice to be able to laugh with the nervous energy. Jeff and I both have a tendency to crack a lot of jokes when we're in tense situations, but we'd been around people nearly all weekend and other people think it's weird when you do this. In the privacy of our car, though, we could easily drift from joking to talking about an article we'd read about radiation and not have to explain or be given strange looks. We particularly employed this for the TWO HOURS we waited for our appointment. We made jokes about the papery shorts they made Jeff wear, and about how revealing his x-rays films were. And how modesty is the first thing to go when you've got cancer.
Finally the physicians assistant came in and viewed the "Tumor Movie" with us...the dvd of the MRI he'd had. She showed us the tumor, which was a lot bigger than we'd thought...about 7cm in length. Then she left for a while and we took pictures of the tumor on the screen and sent them to John with more jokes. Finally finally the doctor came in, shook hands in an all-business way and sat down to look at the films, muttering. It was kind of weird. His PA was there too and we weren't sure if he was talking to us or to her, but he muttered to no one in particular, something that sounded like "hibrushsplaysha". Then a little louder, (but still not in a way that made it clear he was speaking to us) he said "Yeah. That's not malignant."
We glanced at each other and said "Huh?"
"Yeah, pretty sure it's fibrous dysplasia. It's benign."
"And...you can tell that just by looking?" (for six seconds?!)
"Well, I could be wrong. But I don't think I am. We'll have to send it to the lab for sure. But lets take it out day after tomorrow."
And with very few other words, he whisked out of the room leaving us rather stunned. In the eight minutes he spent with us we'd gone from having cancer to not. Or at least probably not. We laughed incredulously as Jeff got dressed and we left the building. We knew it wasn't a sure thing until it got tested, but we also knew enough about doctors to know that they almost never say stuff like that unless they're fairly positive. And since we knew this guy to be the leading orthopedic oncologist in the eastern half of WA...we figured we could trust his judgment.
From the parking lot we made a few calls to family who, we knew, had been waiting and praying for the last two hours (and eight minutes) to hear from us. Then we went to a fellow Acts 29 pastor's house and spent nearly an hour in prayer together, thanking God and asking Him to guide in the coming days.
Then we left, ravenously hungry and euphoric. We had a celebratory meal at Olive Garden, even though we spent nearly the whole time fielding phone calls from more friends and family. Then, we went Christmas shopping. We knew Jeff would be laid up for quite some time after the surgery so we figured we'd use the day and a half in Spokane to knock out as much shopping as we could. It's amazing how un-grinchy Christmas shopping feels when you don't have cancer. We were guardedly giddy.
It just so happened that one of Jeff's elders from Culdesac was having his own trying season physically...he'd had a stroke a few months prior and having not been given a satisfactory answer as to why from the doctors in town, he decided to seek a second opinion with a connection he had with a neurosurgeon in DC. He flew out of Spokane the next morning so he and his wife took the whole family (Jeff's dad was already working in Spokane, and his mom came up to spend surgery day with me, and his grandparents already live there and were hosting us) to dinner to celebrate the good news.
Wednesday morning we made our way to check in for surgery. Again the nervous jokes resumed while he was prepped and we waited for his OR time. He finally got wheeled back just before noon. I joined his mom in the waiting room. A couple hours later the surgeon called to let me know all had gone well. That he wouldn't be able to say for certain until pathology came back in a few weeks, but that the tumor looked exactly as fibrous dysplasia always did under the microscope, and he was all but positive there was no malignancy. He'd drilled into the outside of the femur, scraped the majority of the tumor tissue off, refilled the hole with cadaver bone graft, and then put in some hardware for stability since the tumor had eaten enough of the bone tissue to make fracture a big risk. A large titanium plate went over the bone, and several gigantic looking screws in a region just high enough to ensure that he will be strip searched in airports for the rest of his life.
Once out of recovery we met Jeff in his room and discovered that morphine Jeff was highly entertaining. Unfortunately, our friend the morphine pump had to be taken away early the next morning, and then we were left with practically comatose Jeff for the day. More unfortunate yet was that the day after, we were left with racked-with-pain-Jeff. It was a long couple days in the hospital, but finally Saturday we were released to make the challenging drive home with someone for whom sitting upright was pretty much agony. His grandparents set up an air mattress in the back of his parent's Suburban and I hauled him home to see his kids for the first time in six days.
It was wonderful to be home, and to be back with the kids...but it was a hard first week as Jeff tried to stabilize his meds. We thought it was unfortunate that the hospital did not explain how to wean one's self off the heavy duty drugs. When he started having some nasty side effects, like seeing goats in our living room...we decided to scale back. So I charted out a dosage for him where he would take the meds every 3.5 hours rather than every 3...thinking we'd gradually over the next 2-3 days stretch to 5-6 hours between doses. It was a good plan, in my opinion.
It should be noted here that he was sleeping downstairs because it was easier for him to get around and believe it or not I DIDN'T want to sleep with the window open in December. So I would set alarms for him and leave his meds out for him.
Yeah, apparently people ON heavy pain meds aren't in the best position to follow some of the instructions. After I went to bed, he...determined to get himself off the stuff as quickly as possible...thought "If a half hour is a GOOD amount of time to stretch it, imagine if I could stretch it out even more? Like, say, 10 hours?" Unbeknown to me, he went that long without one of his heavier pain meds. That's when things started getting really interesting. I couldn't understand why he was getting so sick...almost unbearable nausea and tremors and sweating and mood changes. Until he finally told me. I was very tempted to beat him with his own crutches at that point. But I didn't. (See? Growth.)
We got in touch with the doctor who gave some excellent advice for gradually weaning off the heavy meds, and prescribed some less intense ones to cover the pain. Eventually he was off the scary ones, with a newfound passion for the war on drugs.
Within a couple weeks he was back to work, and now, only a little over 2 months post-op, he's basically back to full activity. No crutches, no cane. He has gone biking (slowly, on flat surfaces, and with great exhaustion) and running. The only activity that still gets him is, ironically, sitting. The tumor was close enough to the hip joint to make that a bothersome movement.
And here's what we've learned about Fibrous Dysplasia:
It's fairly rare. This explains why a bone/joint specialist with over 20 years of experience didn't recognize it. He later told us he hadn't seen it since he studied it in medical school. He saw an aggressively growing mass that was eating through bone and was totally convinced (he told us later) that it was cancer. It is caused by a gene mutation that happens in-utero but is not genetic. So Jeff had this thing since before he was born, though it was probably teeny tiny small. It took 32 years to grow large enough to start causing symptoms and pain. They didn't remove all the tissue, it will likely grow back, but if it's at the same rate we should be okay for a few decades. He will need to have semi-annual x-rays to watch its growth, however, because even though it is completely benign, any sort of growing tumor cell can mutate into cancer over time. So they'll take careful measurements and watch its behavior and if anything starts looking suspicious they'll take a biopsy.
We also learned that it's also not a cheap thing to fix. Our bill is unsettlingly near the 30,000 mark. Also unsettling is the fact that our insurance company is denying the claims because it was pre-existing. We're contesting that, because while we don't have formal medical training we're pretty sure it's hard to have an insurance policy while still an embryo, which is the only point that Jeff didn't have this condition. We're in the appeal process, which is really fun. But, we still have peace that God will work it all out. If it doesn't get paid for by insurance we know God will provide another way.
Here's what we've learned about God/life/trials:
I heard someone say that trials prove your theology. We can intellectually believe all kinds of things about God and His care for us, but in many ways it's not until we've been tested by the fire that we really know what we hold true about Him. What we both saw in the midst of this whole thing was a good God at work on a good plan much bigger than us. When we were both completely convinced Jeff had cancer we stood ready to receive that from our Father's hand by faith. I say this not to boast in our spirituality...certainly another "testing" would have come as we lived in that reality day after day like so many have had to. I say this to boast in the cross, because that was where the ultimate questions of "Is God really good?" and "Does God really love me?" were answered with a thunderous and resounding yes.
And He's been teaching us that all our lives. So that when the phone call comes that shakes your whole world...it can't shake your faith. That's what James and Peter mean when they have the audacity to tell us to rejoice in trials and suffering. We found that to be true.
I mentioned Matt Chandler, who found his ominous tumor within days of Jeff finding his. The similarities were striking. He's a pastor. Jeff's a pastor. He's in his mid-thirties, Jeff's in his mid-thirties. He has three kids, we have three kids. While we were living in a hospital separated from our kids and wondering what the future held and holding onto grace, he and his wife were too. I prayed for them often while Jeff was recovering. His pathology came back much worse than Jeff's. He has brain cancer...the kind surgery doesn't remove. He's just now finishing his first round of chemo/radiation.
And to God's glory, he's saying the same things I have here. It's easy for us to praise God now, now that it's over and good health is restored. We are praising and will continue to praise Him for that. But the truth of the Gospel is that God is good when the news is good AND God is good when the news is terrible. This time, for us, the news was beyond good. But let's face it, bad news is in the future. Nobody gets a pass here. So one day, when the news is bad...I'm confident that Jesus will give us the grace to face it with peace and thanksgiving. And He'll be just as good then.
So that's the story of the tumor. I'm putting it here for mostly our my own benefit. Lessons learned during difficulty are far too precious to squander with fleeting memories. Maybe it will bless or encourage someone else as well who is going through something, that would be nice too.
1 comments:
Thanks for sharing, Kim.
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