First Cancerversary

Today marks Dave's one year anniversary of remission. This t-shirt is now 100% accurate.

A year later, I think we've mostly adjusted to life after cancer. I'm not sure when it moved from After Chemo to After Cancer, but it has.  There are still daily reminders, namely his inability to eat anything remotely spicy without breaking out in a sweat and the occasional unnerving pain or sore that seems to be taking too long to heal.  Cancer is a very common conversation around our house, but I guess it might always be. Sometimes the conversations are very reflective and sometimes they still choke me up, but there's no fear in them now. Sometimes I just get choked up because. . . I don't know why. As we were riding in the truck over the weekend, Martina McBride's song I'm Gonna Love You Through It came on the radio and before I even knew what happened, I was raw and crying.  It surprises me the most when the kids bring it up. Luke talked recently about Daddy being sick and going to see him at the hospital. Ella and I were reading a devotional about God taking care of us and she said, "I know. I knew God was taking care of Daddy when he was sick." Conversations about cancer are as regular around our house as conversations about private parts, poop, and what we're having for supper.

I sometimes think others find it shocking that we discuss it so casually, especially with our young children, but I don't know a better way of addressing it than head-on. I also like to believe that our transparency about the experience makes other people feel more comfortable talking to us about their own experiences. My telling of how we found his cancer is still the most frequently read post on this blog, and I usually get a couple of reads through the cancer posts every week. I hope that all of you people who read here for whatever crazy reason are sharing our experience with people you know who need or want the information. And, I hope that they can find something in it that makes their own journey a little less scary and a little less lonely. That's why we shared it publicly. Both of us do a lot of talking about cancer with people we know, and with strangers, who are living through it now. We feel like we survived it to be a source of encouragement and information for others, and that's what we try to do.

A cancerversary is completely new territory for us, so we aren't really sure how one should celebrate such a day, but in our house, there will be cake.

"Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit." - Romans 15:13

16. Family

Ropers, May 2013

Here we are, in our most recent family picture. I love, love this picture that my friend Jessica from Simple Gifts Photography took of us on the UM campus recently. It's past time to update the pictures on the mantle, and I can't wait to put this one front and center.

I try to make a point to have a professional family photo taken every year. We usually do it in the fall, right after the kids' birthdays, but we skipped it last year because Dave wanted to have hair in the picture. We tried to work it out for late fall, but I really had my heart set on doing it at UM, so we postponed it until the spring when everything is green and blooming. They turned out beautifully. Jessica is so talented and so good with the kids. She didn't give me a single picture of Ella with the horrible, my-mother-is-making-me-do-this, fake smile.

I don't know if it's because Dave had a bloodwork appointment with the oncologist last week or because it's summertime, but my mind has been turning to cancer a lot lately.  His bloodwork was all normal, so we have three more cancer-free months behind us, but I keep thinking about what we were doing at this time last year and how different this summer is already - how fabulously, unworried, and unencumbered it is. I took so many pictures last summer because I was on a mission to capture everything, but when I look at them now, I can feel the worry and fear mixed into the joy. I let it wash over me, and then I praise God for all of that hard stuff and for my happy family of four that survived it and came out better on the other side.

When I look at this picture of us a year later, all I feel is joy.

Ready.Set.Cure. 2013

Once again, we gathered with our family and friends to fight blood cancers at the Ready.Set.Cure. 5k organized by the Leukemia and Lymphoma Society - but this time it was in celebration of remission.

His first survivor shirt.

I only decided the day before to take Georgia, so she didn't have a Lymphoma Sucks shirt, but she did sport her lime green bandana to match. Ella and Luke were excited about that part, since Georgia doesn't often wear "clothes". Though I walked as fast as I could, I still think I was too slow for her. She's quite competitive; she wanted to run. During the race, I was thinking I should have sent her with Uncle Dale, but then she collapsed under the picnic table, after wading in the stream and having a bagel and a cup of water, and I remembered that she is nearly nine. Even if she thinks she can sprint a 5k, it's probably best that she doesn't.

Georgia and I at the end. 

We left the kiddos behind this time, since none of them are big enough to keep up but all of them are too big to push/pull the whole, hilly, 3.1 miles. Luke was the only one who cared about it. He has since informed me, over and over, that he is going to race next year. I believe him.

Jake, Ella, and Luke

It was a great time. We raced, we socialized, we took pictures, we ate doughnuts and bagels, and my Uncle Dale won his age bracket. 



Our Lymphoma Sucks crew.





PET Scans

About a month ago, as Papa and I were loading the kids into the car after work and talking about when Dave's next PET scan would happen, Ella asked me something to the extent of, "Does Daddy have pets?" I told her that he does not have any pets other than Georgia and Gypsy, and "PET" is the name of the test he has to do to see if his cancer is still gone.

She's my daughter, so she asked, "What does it mean?"
I said, "I'll tell you what it means. Are you ready?"
She nodded.
"Positron Emission Tomography." (Except I stumbled over the T word because I can never remember that.)
Her eyes glazed over, so I went on.
"It's a test where they give him special medicine, then roll him through a big scanner and watch how the medicine works in his body. If there is cancer in his body, they can see it when they scan him."
That seemed to be a satisfactory explanation for her.

Since then, I've answered that question from other people and a variety of other questions about the PET scan, so I thought I should blog about it.

Positron Emission Tomography - those are fancy words. It's a nuclear imaging test used to detect cancer (and other things, I'm sure, but primarily cancer). Some doctors poo-poo it, but oncologists believe it's golden - and for the price of it, it should be. It works like this.

The patient has to follow a no-carb diet for the last meal prior to the test (be it supper or breakfast, depending on test time), and eat/drink nothing but water for the five hours prior to the scan. It's not as horribly, hideous as fasting for a glucose tolerance test because you can still drink water (ahem), but nothing makes you want to eat a pile of noodles like being told you can't have carbs. Luckily, I just happened to walk by the calendar as I was cooking supper last night and noticed that the PET scan was scheduled for this morning, so I had to break the bad news to Dave that he couldn't eat the mac and cheese. His expression was positively combative as he demanded, "Why?!" I reminded him of the PET scan. He insisted he would be hungry if he couldn't eat the mac and cheese. I handed him a bowl of salad to go with his chicken and green beans. He finished the salad and said he wasn't hungry anymore. I packed a pile of mac and cheese for his lunch after the scan. Ordinarily, all of us would go carb-less on the night before the PET scan, but I honestly forgot this time.

Once he gets to the PET center this morning, he will be escorted to a little room with a sweet recliner. The tech will inject radioactive glucose into a vein in his hand or arm, and he'll kick back in the recliner for an hour to let the glucose move through his body. After an hour, he goes into the scan room, lies on the table, and gets scanned. That part takes about 45 minutes. I've only gotten a glance of the scanner because I'm not allowed in there, but he says it's like a CT scan but bigger.

The kind of scan he gets is actually a PET/CT combo, which is common. As the tech and the oncologist explained to us before the first one, the radioactive dye will "light up" when the body metabolizes the glucose, and cancer metabolizes it differently/faster than normal body tissue. They are watching to see what parts light up. There are parts of the body they expect to light up on the scan - like the brain and the heart - because of how they metabolize glucose, but they are looking for other parts that light up that would indicate cancer. They use the images collected in the scan and reconstruct 3D images of the body, then a radiologist reads the scan. It takes a few days to get the results.

Here's a picture of a whole body scan I found on Wikipedia, where you can read a lot more of the technical stuff about PET scans if you are a nerd like me.

That's basically it. It's a 2 hour process, and I think the hardest part for Dave is adhering to the diet.

Updated: The PET scan was clean and he graduated to the next phase of follow up care so he will start having scans every six months now instead of every three.

Grateful

It's been one year since we found out that Dave had cancer.

One year since his surgery.

One year since he stopped using tobacco.

One year since our priorities shifted from the trivial to the important.

One year since we opened our eyes to God working all around us.

One year since normal readjusted itself.

One year ago today.

Today, I am grateful for Jehovah Rapha - the God who heals.

"'For I will restore health to you and heal you of your wounds,' says the Lord." - Jeremiah 30:17

Nine Things I Learned in 2012

I learned some things last year - some new things and some old lessons reiterated. It's another awkward list of nine things. Maybe I'll just make lists of nine a regular thing.

Nine Things I Learned in 2012

1. God is my Counselor, my Comforter, my Prince of Peace. True, the Bible says it and I already knew it, but I experienced it anew. If cancer taught me nothing else, it taught me to turn to God first in times of trouble. No earthly advisor got it right; no one had the words I needed, but I found them in prayer and in God's Word.

2. My family is precious to me. This also wasn't new news, but I do feel like I learned to be more present with them, to block out distractions and really focus on enjoying them.

3. I need help. Much to the chagrin of my fiercely independent spirit, I just cannot do all the things that need doing all by myself all the time. Learning to accept help more willingly, to ask for it even, was an uncomfortable lesson but one that was also liberating.

4. The world doesn't stop for cancer - nor should it. Though at times it felt like time was frozen, life went on. I worked, Dave worked, the kids went to school, soccer, and gymnastics. People got married, had babies and birthdays, and even funerals. Sometimes I felt too numb to live it, but staying busy living life was better than wallowing.

5. Cancer doesn't always mean death. Sometimes it does and it's heartbreaking, but sometimes it's just part of the journey. Standing in the face of the surgeon last March, I was completely distraught while trying to rectify my previous experiences of cancer=death with the news that my 33 year old husband had cancer. I will be forever grateful for the firsthand experience that cancer does not always end in death.

6. Cancer doesn't end with remission. Technically, yes, it does, but the after effects of treatment continue on indefinitely. It's a price willingly paid for remission, but it's very frustrating and sometimes disconcerting - especially when the after effects are similar to the original symptoms.

7. Forgiving people isn't easy, but it is right. It's right for the person you need to forgive because they are human just like you - acting and reacting in the world from their own unique experience and not necessarily with cruel intentions. It's right for you, the person doing the forgiving, because it frees your heart from bitterness. Sometimes it takes practice. I think that was the biggest lesson I learned about forgiveness, that it requires practice.

8. Increased use of social media requires increased personal responsiblity. Not just from the perspective of what you share (and I've struggled with that aspect this year), but also from the perspective of what you allow to steal your joy. I love having the world at my fingertips, but I am guilty of letting Facebook drama or unending commentary of politics and tragic events put me in a funk. It's just not worth it, and I'm the only one who can control my reaction.

9. Life really is too short to sweat the small stuff. Really.

It's Been Three Months

I had a post written about my post-chemo mental state that I planned to publish today, but after the past perspective-gaining week with Dave in the hospital, I decided not to. It was all about the fear and the flashbacks and how I didn't have time to process everything that happened until after remission, but last week was kind of a mini version of the first hospital stay/cancer experience and I think it gave me some closure. Thus, I'm good and you won't be subjected to the whining.

Dave was supposed to have his three month PET scan today, but it will be rescheduled for later when we know that his blood counts are stable. He'll get his counts checked in the cancer center tomorrow, to make sure they are staying normal without Neupogen shots. And since he had the bone marrow biopsy and CT scan in the hospital, we have peace that he is still in remission.

Therefore, I decided to post some hospital pictures instead. Everyone who came in the room had to wear a mask. Dave had to wear one if he left the room, and found some entertainment value in watching people's reaction to him walking around the hospital in a mask. I'm certain they thought he had the swine flu. He also had to wear one when the kids came to visit because they are germ factories. I was generally exempt from the mask policy because "he's used to [my] germs," but I did wear one when the kids were there to make them more comfortable.

Dave had not seen the kids in a week.

Ella was glad to cuddle with him.

The mask distracts from the tired on my face.

Luke refused to put one on in the room.

But he decided it was okay for the ride home.

We were very glad to have him home last night. Even, maybe especially, Georgia (the dog) was ecstatic. She hasn't been sleeping much during the night and I think it's because she was waiting for him. His place in this world is with us, and our worlds aren't right without him.

Bone Marrow

I asked Dave to write a blog post about his bone marrow biopsy. This is his experience from yesterday.

It is never a good experience to lay face down on a table or bed and have another man stand above you and remove your pants preparing to insert a foreign object into any portion of that part of your body. Sure there are some situations where this might be a bit more acceptable than others, but it is never what you would call a good experience. It is something that had never happened to me until this year and now I have endured it twice.

"The first thing I am going to do is numb the skin", he says. "After that you shouldn't feel anything but pressure." Words so comforting that I grab the sides of the table with both hands, arch my back and start instinctively taking deep breaths.

"This is going to burn just a little." I jump forward on contact.

"All I'm doing is using my finger right now," he says as he touches me again and I lunge a bit less than the time before. "Now, it's not going to be good for any of us if you come up off of this table."

"I'm not going anywhere," I say as I grasp the edges of the table until my fingers feel cramped.

Then the burn. Not a bad burn, just a burn. Then the fingers again. Apply pressure and massaging.

"You feel anything?" he says after about a minute. "No."

"Good because I just stuck a needle in you."

While I have not seen the full length of this needle, I know that it must be sizeable as it is designed to go through what must be several inches of flesh and land in my hip socket.

"All right, this will burn a little because I'm putting the medicine in." And a small burn comes, but I have relaxed after the initial numbing.

"Now for the big one. You should just feel pressure here." I feel something jab into my hip bone. No pain, just pressure and sensation. A small grind type of feeling. And then it's all done. The needle is out before I know it and I release the table, relax my arms and lay there sweating, despite the fact that the room temperature is 65 degrees.

That's a "bone marrow" as they call it. I think the sample will be biopsied now and bone marrow biopsy is probably the proper name for the procedure. I hope you never have to endure the experience and I certainly hope you don't have to do it twice in a year.

We are still waiting for the results.

Neutropenic Fever

We are here again, Dave and I, sitting in a quiet hospital room. It was unexpected. He got really congested and started running fever over the weekend and was diagnosed with a sinus infection on Monday. Our family doctor gave him a shot and prescribed serious antibiotics and offered to admit him to the hospital. Dave declined but agreed to follow up with the oncologist on Wednesday if he wasn't dramatically better. He was still running fever and coughing hard enough to hurt himself on Wednesday so we called the cancer center. We both thought we might be wasting their time and expected to be told that he needed to finish his antibiotics and follow up in a week. That's not what happened.

The oncologist ordered bloodwork and a chest x-ray. The x-ray looked clear but the bloodwork revealed that his immune system is non-existent. His white blood count (WBC) was down to 800; his absolute neutrophil count (ANC) was .7. He was at serious risk for infection (more infection than he already had) so the doctor admitted him with a neutropenic fever.

I wrote a little about how chemotherapy affects the WBC while he was doing treatment. A more serious form of that side effect is a condition called neutropenia, which is an abnormally low amount of neutrophils. Neutrophils make up 50-70% of the body's white blood cells. Common symptoms of neutropenia are fevers and frequent infections, but it also makes common infections present abnormally because the body's normal immune response is supressed. For example, a sore might not develop pus when it becomes infected because the immune system isn't healthy enough to make pus. In the same vein, it can also make the chest x-ray look clear when really, pneumonia might be present. It's tricky like that.

It's fairly common to be hospitalized with a neutropenic fever during chemo treatment, but no one seems to know yet why this happened to him now - three months after treatment. They are running all kinds of blood tests to see if he has any viruses that could cause this drop in his white count. This is our first experience with an infectious disease doctor, so we are waiting to see if he has some weirdo disease. We do know they are testing him for the West Nile virus because he snooped through his chart this morning on the way to his bone marrow biopsy. Yes, he's getting another one of those because cancer is a small possibility but also because the bone marrow can apparently tell a pretty good story about what's happening in the body. They also did a CT scan this morning to look for infection.

Right now, we are waiting for all of those results while he gets IV antibiotics to prevent bacterial infections. They don't seem to think he has a bacterial infection right now because he would be sicker than he is, but like I said, they don't know anything yet. His oncologist sat right in this room this morning and told him, "You are still a mystery." So, we wait for answers and for his WBC to come up to the normal range (somewhere between 4,500 and 10,000).

The good news is - there's always good news - he isn't in excruciating pain after major abdominal surgery and he can eat whatever he wants.

Now I'll wrap up this educational post with a quote. After reading to him about neutropenia last night, he took a few minutes to digest the information and then asked me, "So I have necrophilia?"

No, no he does not. But if you visit, wear a mask because we don't know anything yet.

Young Adult Cancer and Fertility

Fertility preservation/awareness is a topic of conversation that is unique to adolescent and young adult (AYA) cancer patients because they are either entering or in the middle of their child-bearing years. It’s also a topic that you probably wouldn’t even think about unless you found yourself walking down the path of cancer treatment and, hopefully, someone along the way mentioned it. That’s why I’m writing about it; so young people will know.


The issue of fertility with chemotherapy jumped onto my radar when I was researching Non-Hodgkin Lymphoma and found some warnings about preventing pregnancy while undergoing cancer treatments. Dave’s oncologist never asked us about family planning or mentioned the risks of chemo on a pregnancy; and, that really didn’t surprise me since most of the patients he treats are well beyond their child-bearing years. As I dug deeper into the topic, I found out some other interesting bits of information that are worth sharing.

~ For women, chemotherapy and radiation often induce menopause depending on the kind of treatment and location of the cancer.

~ Even if the treatment doesn’t induce menopause, it most likely alters the genetics of the maturing eggs, so pregnancy should be prevented during and for at least 6 months after treatment.

~ Doctors recommend that a woman wait 2 – 5 years after completing treatment before becoming pregnant so that her body has time to recover and the chance of a cancer relapse is significantly less.

~ Chemotherapy and radiation also cause infertility in some men.

~ Doctors recommend that men prevent pregnancy for 2 years after completing cancer treatment because chemotherapy and/or radiation can genetically damage the sperm and they believe that damage probably repairs itself within 2 years.

The good news is that programs are available to help young adults understand their options and, in some cases, offer financial assistance for fertility preservation. Fertile Hope, a part of the LIVESTRONG foundation, is one such program (and also the source of the above information). Check out the website for more information.

Because this topic is intensely personal and I am unwilling to discuss our decision-making in this public forum, I recommend this blog post for additional perspective. The author is a 22 year old woman with Leukemia and I’ve been reading her blog for a while.

Life, Interrupted: A Young Cancer Patient Faces Infertility

The Turning of a Season

It seems fitting that we found out that Dave's cancer is in remission when the first hint of fall is in the air. Just yesterday he called me outside before church so I could feel the fall before the sun burned it away. It's a welcome reprieve, the remission with the changing season.

While I am overwhelmingly happy, I'm also a bit shocked that it really is over - that we really did survive it. Despite constant reassurance and an otherworldy sense of peace, I've forced myself not to count the blessing before I heard the words from the doctor's mouth. Like a baseball player who refuses to change his socks for fear of ending a winning streak, I have refused to commit myself to the idea that everything would be fine for fear that I would jinx it.

As the doctor opened Dave's chart this morning to tell us the results of the PET scan, he said, "Let's see what kind of pet you are." I think we both sighed with relief. Whatever tiny bits of disease appeared on his first PET scan in March were gone this time. The surgery worked. The chemo worked. The prayers worked.

Thank you, God.

He got clearance from the doctor to have his port removed whenever he is ready. As he got dressed this morning he told me he was ready for it to be gone. He'll have another PET scan in three months. If that one is clear, he'll have scans every 6 months until he reaches the 2 year mark. There is a 70% chance that he is completely cured, but the greatest risk of relapse is in the first 2-3 years after treatment, so they'll keep close tabs on him for the next few years. After that, they'll do bloodwork and scans as needed until the 5 year mark. After five years of clean scans, we get to use the C word. For now, we'll just stick with a capital R, for fear of jinxing it, you know.

And, we will praise the Lord.

"Praise the Lord, my soul;

all my inmost being, praise his holy name.

 Praise the Lord, my soul,

and forget not all his benefits—

 who forgives all your sins

and heals all your diseases,

 who redeems your life from the pit

and crowns you with love and compassion,

 who satisfies your desires with good things

so that your youth is renewed like the eagle’s." - Psalm 103: 1-5

Again, thank you for lifting us up. We would have been lost without the prayers.

My Dark Place

I have been struggling.

Or wallowing, if you like, in a pit of negativity, worry, and bitterness. It wasn’t the devil this time, at least he wasn’t in control the way he was the last time I got like this. I’m sure he has been poking at me, taking advantage of my weakness, but this time it was all me. I’ve been doing the things I am supposed to do – filling my heart and mind with praise and worship and Bible reading – but I’ve still acted like the unworthy sinner that I am and relished the wallowing instead of overcoming it.

It’s why I haven’t blogged in a while, or written anything at all. I’ve learned that when I get like that, it’s best to stay away from the blog lest the bitterness ooze out in my words and be preserved forever. That’s not what I want, though it’s probably when I should be writing the most.

I’ve also worried that some of you are tired of reading about cancer or just tired of reading what I write at all, so in my mind, I quit writing a thousand times. In my mind, I shut down the blog and my Facebook page. As punishment – though I don’t know who the punishment is directed at except me. When I’m despairing, I withhold information because I assume that no one cares what I have to say or what I’m struggling through. People have their own lives to live, their own struggles to attend to. They don’t need my drama on top of that. I know what it’s like to be filled to the brim, stretched to capacity with struggle, trying not to overflow on the nearest person who makes a well-intentioned but poorly worded comment that I take badly simply because I cannot process anything else. I don’t want to be the commenter and I try to limit my exposure to the comments.

But truthfully, though I came very close, I couldn’t do it. I couldn’t shut down the blog. It’s been my own personal space on the web since 2006 and I couldn’t end it now just because I’m struggling to claw my way out of a pit. And, though I came much closer to deactivating my Facebook page, I couldn’t do that either. It’s where most of you pick up the blog link, and it gives me a comfortable channel of communication with people I want to be in contact with that I would probably never call on the phone, because I’m very bad at calling people.

So I’ve been in this pit, worrying and trying to figure out if I should continue to blog about our journey through cancer and chemo or if enough is enough already, until last night when Dave’s Nana called to check on him. He had his fifth round of chemo on Monday (most of you didn’t know because I didn’t tell). We talked for a few minutes and she gave me the perspective I needed to resolve my wallowing two-fold. First, she told me, “I asked the kids [the ones who live near her] if you had posted anything on the Internet or whatever you do, but they said you hadn’t.” Nana is 90, if you’ll remember – it was her birthday party we missed the day after Dave had surgery. Even she is looking to the Internet for information, though she doesn’t have a computer of her own. Then, when I reluctantly told her that Dave wasn’t home because he was playing golf (yes, two days after chemo), she responded with laughter and, “That’s wonderful! That made my day that even though he feels bad he’s playing golf.”

Indeed. That’s exactly how I feel about it, too. My heart rejoices when he says he wants to try to play a few holes because it means he’s feeling a little better, even if just for an hour or two. I haven’t been forthcoming with this information because I assume that people will think, “If he’s well enough to play golf then why is she making such a big deal about all of this chemo business?” But golf or not, it is a big deal and thanks to Nana for snapping me out of it.

I will assume that if you are tired of reading about cancer, you will not be visiting this blog for a while, and that if you are here reading, you are interested in knowing what is going on with us. I can’t stop writing it, and while we know that life goes on around cancer, it doesn’t stop it from being.

Round 5, we’re in the middle of it. He’s not feeling well yet, but he did manage a round of golf. It’s cathartic for his mind and makes him feel like he’s doing something productive for his body. The goal in the 48 hours after chemo is to flush out the poison with fluids and sweating. He sweats plenty while simply sleeping, but when he feels well enough to get up and move around, he likes to sweat in the sunshine while doing something. He woke up truly hungry today and he went to his office, but only after, “Where’s my Zofran, woman?” Can you see how crazy this is? He feels okay one hour and bad the next, he doesn’t need the anti-nausea meds for half a day some days and but he might need it before he gets out of bed the next. Roller.Coaster. Anyway, we are both back at our respective offices today, reclaiming normal. He has another nine days of medicine to take before this cycle moves into the rest phase and we relax into the fun week.

Though the 4th of July wouldn’t have been our first choice for chemo week, it was nice to have a day off in the middle of it. The kids soaked him up. They usually go four or five days of barely seeing him during chemo week (because he goes to bed so early) and they miss him terribly. Our day off yesterday gave them time to play with him during the hours when he was feeling well, and play they did. Together and apart, they were all over him all morning – Barbies and trains and babies and games, until he cried Uncle and I herded them out to the pool for a while. This morning Luke woke up and immediately told him, “Daddy! Play!” When he had to leave him alone with his trains to get ready for work, Luke came running into the kitchen to tell me, “Mama, Daddy work!” It’s as if even the littlest one recognizes the good of him going back to the office after a few days of feeling bad.

Round 4, Check.

There's not much to report this time since I found myself able to write during this round of chemo, and thus, less traumatized. In the previous treatment rounds, I've been sort of paralyzed by the whole thing but I guess I've adjusted more than I realized to this episode of our lives.

Once again, he moved straight from week one side effects to week two side effects without an energy crisis in between. I read recently that some cancer patients' experience their bodies adjusting to the low blood counts so they don't feel as exhausted in later rounds of treatement when the blood counts reach their lowest points. We know Dave's bottom out around day 7 and 8, but for the last two rounds he hasn't crashed during those days so I guess his body is compensating.

Here's a little education in layman's terms, if you want it (remembering that I got my medical degree from the University of Google). Lymphoma is a blood cancer, specifically of the lymphocytes - the parts of the white blood cells that make up the immune system. Essentially, some of the normal cells in his lymph system morph into cancer cells (like gremlins changing from cuddly cute things to monsters when they get wet). The chemo drugs he gets every three weeks are designed to wipe out his white blood cells so that the cancer cells that are mixed in with the normal cells will be killed. He also gets a shot with each round (24 hours later) that stimulates his bone marrow to make more white blood cells. That medicine helps his body recover his immune system, but it doesn't take full effect until day 7 or 8 of the cycle - thus, days 7 and 8 are when his white blood count (WBC) is the lowest. Starting day 6 of the cycle, he takes antibiotics for five days to protect his body from bacterial infections. This is also when he's supposed to stay away from crowded places (like the county jail) and sick people. Today is day 10 and his last day of antibiotics, and that means we are well on our way to the rest portion of this round.

Next week, he'll be feeling almost normal again and he gets a bonus week of rest this time. He and his doctor negotiated the next treatment for the first week of July to give his body a little extra time to make white blood cells and to accomodate his work schedule. This means extra fun time for us!

So, for two and a half weeks, we play and then onto the business of round five.

Another Lesson from Cancer: Flexibility

I am a rather inflexible person. I really like routine. I like knowing what to expect. I take comfort in the familiar. My biggest source of stress in any given situation is The Unknown. Followed very closely by Plans That Get Changed. It really, really bothers me when plans get changed suddenly.

This inflexibility is something I’ve known about myself for a while. In the past, it’s been something that drove Dave nervous (Incidentally, he is indecisive – the exact opposite of inflexible – you can see how that would cause, umm… discussions). I also had an evaluation at work one time that listed my inflexible nature as one of my areas for improvement. So…

I’ve been working very hard on being more flexible for years now, and I thought I was doing an okay job with it. I still might hate it when I’m asked to do something new, but at least now I can (usually) deal with it in stride rather than having a breakdown about it. My love of routine is really good for my small children, because kids like to know what to expect (especially kids like Ella). But I’ve realized lately that even though I’ve been working on it, I still keep a very rigid routine. I know this because I get text messages like, “Hey while you are out this morning and up that way how about stopping by the house we like….”, not because I told the sender that I was going that way but because I go that way every single Saturday at the same time of morning to grocery shop at the same Publix. I can’t help it, the other Publix stores in the area aren’t laid out the same and I hate it because it makes me forget things that I need.

I am so predictable that the people around me don’t even have to ask to know where I am on a Saturday. And I’ve probably written about it enough here that you knew it, too, even if you don’t talk to me in real life every week. That’s just so boring.

Do you know what doesn’t give a crap about your routine or what you have planned for tomorrow or next weekend or next year? Cancer. Do you know what that forces you to become? Flexible.

Dave and I had a conversation this morning about how we – our little family – have become more flexible since March. And we like it. We’ve spent that past few weekends meandering around with no solid plans in mind and it’s been wonderful. We’ve gone out to breakfast, made an impromptu visit to my brother-and-sister-in-law’s house in Gardendale (and it was reminiscent of how we used to just end up there on the weekends when we lived in Gardendale. And, I realized how much I’ve been missing them!). We had dinner with friends I had not seen since Ella was a newborn and we stayed out too late (with the kids!) and loved it. We’ve been to the Galleria, mostly just to ride the carousel – and I did ride it even though it makes me feel sick to go round and round – and I had fun because it’s been a really long time since I’ve actually ridden a carousel and because Luke was riding with me. We went to a birthday party. We shopped at a different grocery store and not always in the morning. Dave took Ella on a date while I cuddled Luke for a nap and watched movies on the couch instead of doing grown-up things like laundry and cleaning. We played in the pool when the weather was nice; we dragged a screaming kid on a walk because we needed it, even though it was rainy. Luke ate breakfast and lunch at the table in his room because he was playing and I didn’t care.

We are living The Unknown right now. I started this journey half afraid to make any plans, but now I realize that I half want to be open for entertaining our whims. I have planned exactly two things this summer: the kids’ birthday parties. And I almost decided to skip those altogether, but Ella will be turning 4 and I just couldn’t tell her we weren’t having a party. We don’t have a vacation planned. We don’t have every weekend booked from now until September. But there’s potential for those things. Maybe we’ll take a vacation. Maybe it will be to the beach, but maybe not. Maybe we’ll find a nice hotel with a good pool and just swim for a few days, somewhere other than in our yard. Maybe we won’t go anywhere at all.

All this un-commitment, this potential, this non-routine is rather freeing. Though living in a rut as deep as the Grand Canyon is comfortable for me, I get so stressed out and exhausted by the expectations and demands on my time, the sense of responsibility and obligation I force myself to uphold. Not that those are bad things – they are really good, but sometimes it’s suffocating. And sometimes I just need to breathe. Is it coincidental that cancer brought that breath into our lives? I doubt it; I don't believe in coincidence.

The Valet Parking Lady

As busy as the Bruno Cancer Center is and as much as I've been impressed with the nurses and doctors and office staff, there is one lady there who just blows me away: The Valet Parking Lady.


Today's parking spot.



We found out yesterday that she goes by the name of Suzy Q, and I'm ashamed to admit that it took us four treatments to learn this. Because she knew Dave's name the day after his first one. She never fails to call him by name and she knows when he's there for a long day of chemo and when he's just there for the quick shot (he gets a shot 24 hours after each round of chemo to help his body recover his white blood cells).

This space usually holds 1 or 2 more with
just enough room to drive around them to get out.




The lot was not full today.. there are usually
2 more cars squeezed in this space you see.



Suzy Q works in the hot stress of a parking lot with a seemingly unending flow of traffic - and she is always happy and caring when she talks to the patients. She also has mad parking skills. I'm astounded at the number of cars she can fit in this tiny lot. One day, when she allowed me to parallel park the car myself for our quick shot day, I sucked it up so bad that she offered to fix it for me and bring the keys inside to me when she was done - teasing me the whole time. Another day, she said, "I'm gonna park you right over there in the shade Mr. Roper 'cause we don't want you gettin' too hot."

She does a job that I would hate and she does it with a good attitude, even when the cars are lined up so no one can get in and out of the lot and it's 95 degrees outside. I don't know how much a parking attendant makes, but I know it's not millions. Her job is one that would be easy to glance over without much thought; I'm sure some people see her as a mere convenience so they don't have to find a parking spot. But she's more important than that.  She spends her days running all around the St. Vincent's campus so that cancer patients have only to walk into and out of the front doors to get to their cars - not because the parking situation is sketchy, but because sometimes even the walk to the front door is too far. I don't know if she realizes it, but she has a pretty powerful ministry going on right at the front door of a place where people really need ministering. Any random person could be parking cars there, but not many would do it with the love that she displays for the patients. 

There are so many cars parked that the entrance/exit is one lane.



I believe she has a spiritual gift of service and probably also of mercy, and she is putting them to good work every day.

Do people recognize my spiritual gifts from watching me live my life? I'm not so sure...

Chemo Day

The waiting room at the Bruno Cancer Center is a bizarre and busy crossroad of lives. I sit in a chair in the corner,  so I can see the majority of the room (save for the chairs that are blocked by the aquarium in the middle) but most importantly, the door where Dave goes in. I like to watch the traffic and try to guess who is here for the first time, who is in the middle of treatment, and who is here for follow up. I want to see the nurses when they come out in case one of them is looking for me.

Also, I've scoped out the place and my chair is one of the few next to an electrical outlet, which is necessary if I'm going to work while I wait.  Sometimes I work, sometimes I Google, sometimes I read. Today, I've done a little of all of that and addressed birthday party invitations for Ella. Last time, I worked the whole day, with my business all spread out around me, talking on the phone and annoying my fellow waiters. I sent my dad a message that day to tell him, proudly, that I had been acting just like him all day. (When he waited with me for Dave to have his port put in back in March, we both spread our business out around us and worked, him borrowing my notebook, glasses, and laptop because he wasn't planning to work until he saw me with all of my work things. It was classic Wyattness.)

It's really hard to focus on anything for very long because there is so much traffic in and out of this place. Dave has one of the longest chemo treatments, so we get here first thing in the morning when there are usually only 2 or 3 other people here, and we leave late in the afternoon, when the crowd has thinned out. That means I get to watch a group of people pass through in the morning and then be replaced by a new group in the afternoon. Some people bring a herd of people with them and some come completely alone. I'm not sure how that works. Maybe they don't get Benadryl with their chemo cocktail? Or maybe they have a ride coming later?

All these people make for good People Watching. I like to listen to their conversations and try to figure out who has cancer, what kind, how old they are, etc. And also, sometimes they are just funny.

There is one pair of older ladies, always dressed to the max with jewelry and shoes that put my t-shirt and flip flops to shame, that I've sat next to twice now. They come in the morning. The husband of one of the ladies has cancer and I'm convinced that one brings the other lady along for entertainment while she waits. Today, armed with new iPhones in pink Otterboxes, they were discussing whether or not they had the Timeline on Facebook, how to create notes on the iPhone for their grocery lists, and looking at a picture on Facebook of so-so's new wife whom no one knows is married. They left before lunch.

While they were here, another family of husband, wife and 2 grandchildren came in and sat beside us. The wife has cancer. The children were young, a boy around 5 years old and a girl about 12 months, she sort of walked but mostly crawled. And she tried to take Fancy Lady's phone and magazine. They also left before lunch.

After them, an older man sat down next to me with a lap desk, a Bible, and a stack of mail. He actually initiated a conversation with me because I'm wearing my Job 13:5 shirt today. (I almost never initiate conversation in waiting rooms because I'm socially awkward with strangers.) I found out that his stack of mail was actually tests from a prison correspondence course - a Bible study - that he and his wife help facilitate. His wife had cancer and they come back to Birmingham once a year for her follow up appointments. They live in Georgia now but they like these doctors. The wife grades the multiple choice part of the test, then the husband reads and comments on the discussion questions. Their daughter got her Master's degree in audiology at the University of Montevallo. He and his wife live near her now to take care of their grandkids while she works a few days a week. She actually called and asked them to move to Georgia to do that and they did. I told him I thought they are doing good work, both with the prison ministry and the grandkids. And it got me thinking, my introverted self could grade tests for Biblical correspondence courses...

Then as I was answering the question about Dave's profession, another man sat down with us and volunteered that his brother was a criminal defense attorney until he finished his 17th capitol murder trial and decided he needed to do something else. His wife has cancer, and he's still here waiting for her to finish her treatment.

There is another man here who had a visit from his son, daughter-in-law and baby granddaughter while he waits. I'm not sure who he's here with, but I presume it's his wife. He's still waiting, but the baby is gone.

There's a whole group of people on the other side of the room that I watch, but can't hear. I keep track of the young ones because there aren't many. Most of the people here are 40 or older. I keep track of who has lost their hair and who is in a wheelchair that wasn't last time. I wonder how often they have to come.

I really like it when there are little kids here because they liven the place up a little. But there aren't many kids because treatments take hours and there is nothing to do here but read 8 year old magazines and watch Judge Somebody loudly berate young idiots about their failure to use birth control (a point I agree with, though at a lower volume).

I check on Dave periodically but I can't stay with him because the treatment room is a large open space with lots of chairs separated by little walls so the patients can't see each other, and so they can pretend they don't hear each other. When I'm back there, I take note of the young ones as I scurry into his little space, trying not to invade the others' privacy and disliking the wide-open feeling of many sets of eyes on me as I walk through the door. I bring him snacks and lunch and try not to bug him if I think he might be sleeping. When he's finished, he comes out looking wholly normal without even a visible bandaid since his port is in his chest. Then we go home.

This is what Chemo Day looks like for me.

Halfway There

Round three of chemo is over, I guess. He has energy and has already developed the week 2 side effects even though he didn't have the second crash first. That messes with my head. I was expecting the crash Monday or Tuesday of this week, even had meals lined up for those days, and it didn't come. So I'm calling round three finished.

This one hit him hard and fast but he recovered more quickly, too. I'm certain that's because he had no choice but to sleep in the two days following the treatment and that's what his body has been needing. I'm hoping he can arrange his schedule so that he has time to sleep like that for the next three rounds.

This round was hard on me. I haven't been about to lose my mind, but I'm feeling less like, "Let's do this thing" and more like "How am I going to make it through three more rounds?" He told me after the first round that he thought it might take all of his willpower to survive six rounds of chemo. I'm thinking it might take all of mine, too, and I'm not the one being poisoned every three weeks. We are living in a bizarre world right now.

I was laying in bed with Ella the last week and she kept asking me when we were going to eat at a certain restaurant. It was taking me forever to figure out which restaurant she was talking about and I asked her when we had been there before. She said, "You know, that day we walked around and passed out fingernail files." And I did know. She was talking about a restaurant we stopped in one day when we were handing out campaign literature for one of the local elections. It was Sunday, February 26, two days before I took Dave to the ER. It was all I could do not to lay in her bed and cry, thinking about how drastically our lives changed two days later. Not for the worse, but never to be the same again. Having a new normal thrust upon you without warning takes some getting used to. I occasionally find myself in situations like this one with Ella where old normal and new normal collide in my mind at the same time and I struggle to process everything that's happened since the end of February. Some days it's hard to believe it's been three months already and some days it's hard to believe it hasn't been three years.

I've come to realize that cancer has a time warp similar to the one that happens at the end of a pregnancy. All at once, time is flying and standing still. And, cancer is a line of demarkation in our lives together. Just like having kids. In the timeline of us, there are periods of time I think of as Before Kids and After Kids, and now I've added Before Cancer. There's no After yet because this isn't over. I'm not sure it will even be over at the end of chemo. I'm thinking there will be other time periods known as During Chemo and After Chemo, but I don't know when After Cancer will happen. Will there be another line of demarkation or will we just ease into it without realizing it until we're well on the other side? Now I'm rambling, but at least it's cathartic.

Anyway, three rounds down and three to go. With my whole body and soul I'm looking forward to this long weekend of playing in backyards with my family, to soaking up the sun and fun and laughter, to restocking my mental facilities in preparation for round four. And Lynyrd Skynyrd's Tuesday's Gone in my ears has mellowed me out just in time for the weekend. 

Thinking Back, Living Forward

It’s been just over 2 months since Dave’s surgery. There are still unknowns, but we are in a much better place now. We know that the surgeon got all of the tumors, that the surrounding tissue did not show evidence of cancer. We know that his PET scan showed “no measurable amount” of cancer left in his body after the surgery. We know that his type of lymphoma generally responds well to chemotherapy and that the majority of the time chemo will cure it. We know what the chemo does to his body and how to manage the side effects. We know how long he will feel bad and when he will feel good again after a round of chemo.

We are very optimistic that this is just another episode in our lives to be survived rather than an ending.

I am glad to be in this place, where we know what is going on and we have some reassurance for the future. But occasionally I flash back to the lowest moments immediately following his surgery and I’m consumed with the emotion all over again. Sometimes I’m overcome with the feelings I had while I sat beside him in the dark each night in the hospital, wondering what this meant for us, where we would go from there, if he would be alive the same time next year. I was so scared. For him, because I had no idea what he would have to endure and for us because I didn’t know if we’d still have him.

Sometimes I think back over the sadness of a conversation we had one Friday afternoon, after his first oncology appointment, before we had any real information about his diagnosis and treatment plan. I told him that I truly didn’t believe he was going to die, but that I knew that I would be okay if he did. That I didn’t want to think about my life without him in it because he is my best friend in this world, but that if he came to a point where he was holding on to life for me when he needed to say goodbye, I would be able to let him go. Because I would rather he be in Heaven waiting for me than suffering on earth with me.

He has no intention of dying this year and we are planning for his full recovery, but it’s important for me to capture the low points in words to help me process those feelings that bubble up and to help me remember how far we’ve come in two months.

This was a life event that changed me. While the process is sometimes painful, I’m confident that the results will be worth it. If nothing else, my life was brought into razor sharp focus and my perspective was adjusted. The things that don’t matter are clear and so are the things that do.

God is in the forefront of my mind most of the time now in a way He wasn’t before. I find myself considering my words and actions with the questions, “Does what I’m about to write/say/do reflect God’s glory? Does it make it evident that I’ve been with Jesus?” My humanity still gets the best of me, often, but I am trying to take that breath and consider the testimony I’m living. I’m a work in progress.

My nucleus, the man that God made for me and the little souls He put into my care, they teach me new things every single day and they constantly remind me of the importance of time. They are infinite sources of joy and laughter. They keep me busy living.

My family, those outside of my household – both of my blood and of my heart, has bound itself around us and lifted us up, held us together when I could not. It’s a surprisingly extensive family. I’m awestruck and humbled by it. It’s one of the things that matters a lot.

I was asked recently if I wanted to go back to the fall of last year, before any of this happened, when everything was still normal. My answer was unequivocally, “No.”

I have grown and I have been richly blessed through this trial. I would not undo it. This is our normal now.

We Survived Round Two

Dave's second chemo treatment was last Monday, and last night, ten days later, he gave me the clue that it was over: "It feels good to feel good again." Also, he went to bed at normal time - that is to say that he fell asleep in the chair, watching TV in the 8:00 hour. That's normal.

I think this round went smoother for both of us, mentally speaking. I didn't lose my mind and I successfully fended off the devil the few times he tried to hijack me (thanks for the prayers and Bible verses to help me handle that bit of business). Luke was pitifully sick for a couple of those days, so between him hanging on me like a baby monkey and his inability to sleep through the fever, I was ripe for losing it. But I didn't. I take absolutely zero credit for that. That was God working as a result of you praying. And when I was able to leave Dave on Thursday and go back to my office, I rejoiced all the way there for the hour of alone time I have during my drive to work. By Thursday of last week, I desperately needed some alone time.

And that night, Grandmother kept both kids so I got to sleep. I was in my bed at 7:58 that night and asleep before 9. I didn't get up again until it was my turn to shower the next morning. It's amazing what a full night of sleep will do for your soul. Friday, Grandma and Pop the Pop cleaned the house for us. Monday, Rebecca brought supper. All those things made Chemo Week easier for us this time.

I've already consulted My Favorite Sister about organizing meals for us for the future rounds, because having food show up at the house already ready to eat is a lifesaver on the days that Dave is out of commission and the howler monkeys are screeching. I didn't realize how much I need that until this week, when it happened twice. Also, some of you who brought food after Dave came home from the hospital? That's still helping us because I was packing some of those meals away in the freezer like a mouse storing up grain for winter. 

Dave probably worked too hard the first couple of days after chemo this time, but he had a busy schedule and he was insistent that he keep it. So we did. I just went to work with him so I could drive if he needed me to, and just be there with him. I think that helps. Physically, he says he thinks it affected him about the same as the first treatment, and he followed pretty much the same up and down pattern that I mentioned after the first treatment. That's encouraging because it means we should have about a week and a half of fun days before round three.

Finally, the update I know you've all been waiting for: His eyebrows are still hanging in there.

"Well It Certainly Sucks"

Monday afternoon I got a text from Dave: "It's coming out. Right on schedule I guess." He meant his hair. His oncologist told us it would start falling out 14 days after his first chemo treatment.

We didn't own any clippers, so that night at supper we discussed his options.
1. Go to Great Clips and ask them to shave it. - He didn't want to pay for it.
2. Cut it with scissors and shave it with a razor. - We didn't feel like doing it once Luke was asleep.
3. Get a Flowbee. - Which led to: "Oh, we could vacuum you!" He told me we'd do it and I could put it on the blog.


We don't have a Flowbee, but we do have a vacuum.

It worked about like it does on the dog; it got the loose hairs but didn't do much else. We decided to wait a day and see what happened.
He had a new party trick. He could pull out clumps of hair, and he did all day long until the floor in Luke's hospital room looked like this.

Has somenone been cutting hair in here?

We had to shave it. He was shedding everywhere. He even commented that he'd have to vacuum our stairs again if we didn't do something soon. So, on the way home from the hospital we stopped at Target to buy clippers.

He went to work when we got home - shaved it with clippers and then finished it with a razor.

Last look at Hairy Dave.

I think he loves his bald head.

Last night at bedtime, he made some threatening remarks about how cold his head was and the temperature at which I keep my sleeping chamber, so I found him a hat to sleep in. Touching the thermostat at bedtime is a no-no, even if you do have cancer and a bald head.

And so, he's bald. None of the kids freaked out about it because we made sure they were around for the whole shaving process. Jake was the most enthusiastic - feeling all over his head as if to ask, "What happened to your hair, Uncle Dave?"