Round 6 is All Done

With lots of support along the way, we did it. Six rounds of chemo are complete. Today is day nine of round six and Dave is feeling better. The fatigue hung around a lot longer this time. He thinks it’s because he had to take an extra antibiotic that made him feel yucky. I think it’s because we didn’t have time to rest before this round. The last six weeks have been extremely busy. But now it’s over.


This round was a lot easier on me because I knew it was the last one. Just knowing that I don’t have to take him back for chemo in two weeks makes me ecstatic. There’s still a great big unanswered question in front of us, so we haven’t danced naked in the streets yet, but the relief of knowing that this phase of the process is over lifted a huge weight from my soul.

If you’ve seen him lately, you’ll know that is hair is already growing back. It started sprouting in earnest during the extra week after round four and he decided not to shave it again. He lost a few of the black ones after round five, but the gray ones? Well, I’m not sure you can kill them. They seem to be the cockroaches of hair. Even chemo doesn’t kill them. Now he has enough that it gets all crunched up on the side of the head when he’s sleeping like it used to. And now he actually has to dry it when he gets out of the shower, and he almost needs a brush. Ella walked by him in the living room the other night and said, “It looks like you’re growing some hair up there, buddy.” His eyebrows never did fall out completely but they did get thinner.

Next week he’ll have a PET scan and the week after that, we’ll know. Until then, we will rest in thankfulness that there isn’t a Round 7.

He Really is as Wild as His Hair

Ella has an obsession with Doc McStuffins right now and sometimes she asks to watch an episode at bedtime in place of reading books. Sometimes I let her. The other night while I was getting her settled in on the couch to watch, Dave said, "Look at Super Cat." Luke was coming down the hall with his folding Mickey Mouse chair and his Allstar baseball cap. Then he set it up and sat down to watch like he was at the ball park watching baseball rather than in our living room watching Disney.

Super Cat, ready for the ballpark or Doc McStuffins.

Here he is gettin' ready to ride with Ella's sunglasses, toy camera, and Sleeping Beauty high heels and Dave's mother's pink plastic rolling dog. Yes, it's old and a little creepy. He loves it.

Ready to Ride

And here he his all discombobulated after his first attempt to ride the pink dog. What? That doesn't look like a riding toy to you? Me either, but apparently anything with wheels that's big enough for him to sit on is a riding toy.



The Spill

He gave it another go, sans sunglasses, high heels, and camera. That face tells you what kind of noise the pink dog makes when it's rolling.

Back in the Saddle

Dave and I have been sorting and cleaning and putting away Nana's things all weekend so our children have been sort of... free range. Yesterday, Dave said, "Amanda, you have to come in here and see this!" And this is the "this". That's a Little Coupe he's sitting on. He is apparently just light enough that it doesn't roll over when he scales the side of it like he's part monkey. A monkey that wears an ugly blue cap on a regular basis. As you can see, he was very proud of himself.



Large Riding Toy

It's Olympics time again. Dave and I love the Summer Olympics. We are diligently working to indoctrinate Ella and Luke into our two-weeks-of-late-night-TV-watching-sports-overload-every-four-years love. It's so serious that we even broke our own "no TV at the table" rule so we could watch the US women's synchronized divers win silver. I'm trying to teach Luke to chant, "USA! USA!" So far, they both really love diving and gymnastics (which Luke refers to as "nasties"). When the divers dive, Luke yells enthusiastically, "Jump HIGH!" or "Jumpin' on the bed!" We've told him it's water. He doesn't care. Ella stayed up until nine tonight to watch the women's gymnastics and then asked me to save the rest so she can watch it tomorrow.

This is how they watched synchronized diving this afternoon. Luckily, the arm of our couch is multi-functional. Shortly after I took this picture, it turned into gymnastics equipment as they took turns vaulting off the ottoman and back flipping over the arm of the couch.

Future Olympians? Circus Performers?

 Yes, they can both back flip over the arm of the couch.

One More Artifact

I had been looking for this at Nana's house and Dave just found it in a box.

Last Thanksgiving, we had breakfast with Nana and Ella said the blessing for us. In our house, we call the blessing "the ABCs"; you can see why below. Ella learned this at preschool and taught it to Nana  that day. She was so excited about it that she wrote it down and asked Ella to write her name on the paper.

Ella's Blessing

This was during Ella's Fancy E phase. These days, she usually opts for a simple E and she usually writes from left to right.

Artifacts

We spent our weekend sorting through Nana's things and cleaning out her house. As I said before, she wrote notes about everything. We found them everywhere. Bits of history, dates, family news written on scraps of paper, the backs of pictures, on the bottom of furniture - like she is still telling her story. A lot of it was passed down through oral tradition, but it was obvious that there were things so important to her that we needed to know it, even if she wasn't there to tell it.

These are some of my favorite things.

This first picture was actually from her house in Ensley, where she lived for 30 years before moving to Gardendale. When we were dating, Dave took me to the house to show me these footprints in the sidewalk. They are his. He estimates that he was about three when the city poured the sidewalk and Nana helped him make his footprints in the wet cement. The day after she died, we went back there and I took this picture.


He still has square feet. So does Ella. 

Nana's sister-in-law, who apparently only went by the name Big Sister, was a ceramics artist. We found dozens of ceramic pieces that she made, all of them with her mark on the bottom. Some of them have stories, and some of them we just kept because they were around for forever. No one knows the story about this Native American woman, but she lived in Nana's house for as long as Dave can remember. I especially like her because she is wearing her baby. I wish I had asked Nana if she wore her baby.   

Papoose

Big Sister also made this frog, and it lived in Nana's bathroom with its mate. Ella always tried to put its pipe back in its mouth. She was fascinated by the frogs. When I asked if I could bring them home for her, I found out that it was Dave who originally broke the pipe off of his mouth. I unpacked them when we got home and showed them to Ella; I asked her if she wanted to keep them on her bookcase in her room where they wouldn't get broken. She told me, "No, I think I'll just keep them in my bathroom like Nana kept them in hers." I'm on assignment to find a shelf for them so they will be out of reach of little hands.

He reminds me of The Wind in the Willows.

Meet Agatha Peabody. She was Dave's mother's doll when she was a little girl. I do not know if she named her Agatha Peabody or if the doll came with that name. That's another question I wish I had asked Nana. Miss Peabody has been around since the 1940s and Nana made the clothes she is wearing. Ella used to play with her at Nana's house. She has a porcelain head and limbs, so we made a place for her on the dresser. Ella understands that she might break and has already asked me who made the little chip on the bottom of her shoe. I didn't know the answer.

Miss Agatha Peabody

I took a few pictures of Nana's journal entries, namely the ones that mentioned my Round 5 meltdown and her phone call that lifted me up. Also, notice her notes about the Braves game.

Nana's July 6, 2012 Journal Entry

Dave found this baby picture of himself in a box today and brought it to me with Luke's 12 month picture. He couldn't believe he was making the same face that Luke made in our favorite picture of him. Didn't I tell you our children look like him? The only thing they got from me was slightly lighter hair.

Luke at 12 months, Dave around 12 months

Finally, I leave you with this horrifyingly funny bit of ceramic. I don't know if I should laugh or run screaming from it. I'll opt for laughter.

Scary, laughing elf?

We Are Not Vegetarians

Not that it was a secret, but Ella made it quite clear during our conversation on the way home yesterday that we are not vegetarians.

While we are driving, we point out all the things we see. Luke sees lots of big trucks and boats these days. Ella sees everything. As we passed by a yard with a donkey grazing beside the road, I pointed it out to her. She saw it and thought about it for a minute or two before she asked, "Mama, what kind of food does donkey food make?" 

It gave me pause. I tuned into my internal Preschooler Language Manual and desconstructed her question until I came up with this: "Do you mean "donkey food" like bacon comes from pigs?"

Ella: Yes.

Score! I guessed correctly.

Me: They just make donkey meat. We don't really eat donkeys.
Ella: Why not?
Me: Well, there are some animals we raise for food, like pigs and cows and chicken, and some animals that have jobs to do, like horses and donkeys that are for riding or pulling loads, and some animals we hunt for food, like deer and turkey.
Ella: Oh.
Me: I guess you could eat donkey meat if you were starving and there wasn't any other food, but generally we don't eat donkey.
Ella: But can you buy donkey at the store?
Me: No.

And thank goodness because I would probably have to learn how to cook it.

The Port: He Love-Hates It

One of the bits of information I went looking for but had trouble finding at the beginning of this cancer journey was documented personal experience with “the port.” It’s such a generic phrase and there are lots of different kinds of ports with different purposes. I understood the idea, but I didn’t satisfy my curiosity about it until Dave actually had his put in and the nurse put the owner’s manual in my hands. Finally, I had information to devour.

I suspect that not many people write about it or post pictures of it because... well, because of a lot of reasons. I obtained Dave’s permission to write this post about it so that information will be out there for the next person who needs it. He told me I could include pictures from the manufacturer’s website, but I am forbidden to post a picture of it in his body because it is too personal.

Dave has a Bard PowerPort that looks like this. This picture is enlarged to show detail; it’s actually about the size of a quarter.

I don't know why they make them purple.

It lives in the right side of his chest. If you put your left thumb in the dip between your collar bones and spread your fingers comfortably on the right side of your chest, the port would be between your pinky and ring fingers. Outpatient surgery with twilight drugs is required to put it in (mainly to keep everything sterile but also for the good drugs), and it requires a 2 inch incision where the actual port goes in and another centimeter length incision a couple of inches above that to help guide it into position. I think Dave’s procedure took about thirty minutes.

This is what it looks like inside the body.

The port goes right under the skin and the catheter is threaded into a blood vessel. He had soreness in his shoulder for a couple of days after the surgery, but it didn’t require narcotics. I don’t think he even took ibuprofen.

The little incision was closed with a dissolvable stitch and the 2 inch incision was closed with steri-tapes, because the oncology nurses would have to access it two days later for chemo. He had to keep it dry for 7 days, so we bought those giant square Band-Aids to put over it while he showered. For a couple of weeks, it was swollen so it just looked like a knot under his skin. Now, you can see the three little palpation bumps through his skin when he’s not wearing a shirt. Otherwise, you don’t even know it’s there when he’s wearing his usual t-shirt / dress shirt combo. This is the benefit of being a man. If it were in my body, you would be able to see it at the necklines of some of my shirts.

It eliminates the need to start an IV line for each chemo session and eliminates the need to draw blood from a vein in his arm. I believe they might also be able to access it to inject the radio-active glucose for the PET scan; we’ll find out about that in a few weeks. They spray the skin with Dermaplast, or something like it, to numb it before they stick him so he never has to feel the stick. That is how they draw blood to check his counts and how they hook up the IV for the chemo.

They use a special needle (a Huber needle) to access the port and it looks like this when it’s ready to be hooked up to the IV.

Obviously the "tag" is the only part you see.

Ella would have called this part a “tag” when she was younger. All the patients have tags sticking out of their shirts while they are waiting for a chair in the treatment room.



Once the treatment is over, they take it out and stick a cotton ball on top of the prick with a Band-Aid. He has to leave it on for a few hours in case leaks. We haven’t seen it leak, but that’s what the nurse told us after the first treatment.

It has titanium in it so it will show up on an x-ray and possibly set off metal detectors.

Sample X-Ray

For that reason, he carries an identification card in his wallet. He also wears a purple bracelet so that if he has an accident and finds himself unconscious, the medical staff will know that he has a port and what kind it is.

When it’s time to take it out, he’ll schedule an in-office appointment with the surgeon to remove it. He doesn’t have to be in the OR for that part. He’ll probably keep it for at least a year after he finishes chemo, just in case. And because it makes the blood draws so much easier.

He hates it because it is a foreign object in his body that you can see from the outside. He is very aware of it and it feels weird. He also hates the reason he has it. He loves it because it makes the whole experience a little more comfortable for him, needle hater that he is.

The pictures are from the Bard website.

Nana

At the age of 90, Nana, Dave’s grandmother, raised, or played an important role in raising, three generations of children and then filled her arms full with a fourth generation of babies.

She was a child of the Great Depression, truly understanding what it means to have nothing and considering FDR a real-life hero for helping her family get back on their feet with his “40 acres and a mule” program.

As an adult, she was a beautician by trade, cutting hair for years and years in a beauty shop in Midfield – and part of that time she worked side-by-side with Tammy Wynette, before she was famous, of course.

She learned to dance the Charleston at the young age of 80-something and loved it, despite the fact that Baptists don’t dance.

She was a hardcore Braves fan who could talk baseball for hours if you were willing.

She has sisters and cousins and nieces and nephews spread all over the South and she kept up with them – who was sick, who had babies, whose birthday was coming up. That family surrounded her for her 90th birthday party and ended with an extended visit with her sister. She was positively giddy about it.

She kept lists and notes about every occasion – menus, who visited, the funny things the kids said, what we did or talked about. She wrote down everything so she could think about it again later. I thought this was a funny habit when I first met her, and now I find myself doing the same thing.

She lost her only child in 1992. And her husband 4 years later. She didn’t let that stop her from praising God.

She was everyone’s grandmother. She loved me as if I were her own blood when I joined the family and I spent hours talking to her the way I wish I had talked to my own grandmothers. I was too immature to know what I was missing then; she gave me a second chance.

When we visited, she made sausage balls because we love them and she played and played with the kids - sitting in the floor to build castles with the wooden blocks she kept for them, and occasionally, chasing them around the living room, laughing like she was one of them.

She was wise; the kind of wise that only comes with watching the world change and change again for nearly a century and learning from it.

She was prayerful; thanking God for every day He made and the people He put in it.

And at the end, she was peaceful, knowing her work on Earth was finished and her reward was very near.

Jesus said, “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” - John 16:33

She was the most faithful person I have ever known. She has overcome the world.

This is Nana.

March 3, 1922 - July 12, 2012

Nana loved a lapful of babies.

Godspeed, Nana. Until we meet again…

Dinosaurs and Cell Phones Do Not Make Good Dinner Companions

At barely 4 and almost 2, I didn’t expect to be policing cell phone usage at the supper table. But I am. Our rule is well founded – no texting or talking at the table. Even I have been called out recently about checking my messages (though technically I don’t count it as “at the table” since some nights I barely sit at the table during meal time), and Grandmother recently had to excuse herself because she just couldn’t stop texting at the table. That led to another issue. Now Ella doesn’t text or talk at the table, but she does excuse herself to the other room to take a call or send a message.

Her phone obviously doesn’t have service, but she will make you think it does.

Now Luke has started bringing a phone to the table. They keep them beside their plates. Dave and I don’t even do that. I believe it’s time, at 2 and 4, that I enact my plan of collecting electronic devices in a bowl at supper time so that we can focus on each other at the table.

On that note, another something that apparently needs collection at supper time: a plastic Brontosaurus. Aside from cell phones, Ella never really brought toys to the table. Meal times are for eating and we consider eating to be serious business. Luke, however, has a habit of bringing an entourage to sit beside his plate so that he has someone with whom to share his meal. It could be a baby doll, his little Mickey and Goofy figures, a Barbie, and most recently, a plastic Brontosaurus. I generally don’t have an issue with guests at the table because they keep him focused on eating – a task that I often find challenging. But, when the guests get unruly, they have to be excused.

That is what happened to Brontosaurus Sunday night. He could not control himself. In his excitement at sharing a meal with Luke, he was galloping all over the table and into the plates of the rest of us. I was not amused (really I was but I had to act like I was not because I’m the mother). Brontosaurus had three chances to get himself under control but he just couldn’t do it. Dave had to send him to time out on top of the refrigerator.

Luke’s heart was broken. He cried and cried and every time he started to not cry anymore, he looked up at the top of the fridge and said, “Di-saur, up!” and cried again.

We live in a house of loosely controlled chaos most of the time, because we value play as an important job that kids – and parents - need to do. However, we also value eating a meal without fear of having our tea glasses charged over by a rogue Brontosaurus. Thus, our list of supper time rules is growing.

Ropers' Rules of the Table

1. Shirts are required. Once they are able to eat with utensils and no longer cover themselves in food, this rule goes into effect.

2. Phones are not allowed because we are eating together, not with whomever is on the other end of the line.

3. The TV is turned off because zombies also do not make good dinner companions.

4. Unruly toys must be excused.

Brontosaurus hasn’t been back for supper yet, but I’m sure we’ll give him another chance – now that he knows the rules.

Around the House

I've collected a little kid fun to share. These aren't as funny as some of the things they say, but they each tell a little story about how they are learning.

"I'm all full of hands." - Ella, while trying to open the door to go to the car one morning. Seriously, summer break is killing this Mommy Mule. They feel like they have to take so much stuff with them every day. They each have their regular backpacks with changes of clothes, etc. and they each have a little back pack stuffed with toys and an armload of books, babies, blankets, games, and whatever. The longer I let them wander around the house before we leave, the more stuff they need to take with them. It takes ten minutes to load the flippin' car.

"I did it, Mama!" - Luke, when he finally figured out how to get on the float in our back porch pool. This is also the first complete, grammatically correct sentence I've heard him speak.

"I don't feel like me today... I'm all tired and yawning. Yesterday I felt like me; today I don't." - Ella, on the way to Grandmother's one particularly tired morning.

"[Fake gagging noise] I burp! S'muse me." - Luke, he already loves bodily function noises, and also practicing his manners.

"I just call him Mr. Jumps-a-lot." - Ella, in response to my comment that Thumper already has a name. She often doesn't agree with the names that Disney chooses for the characters.

"Mama! Ehwa. Tee-tee potty!" - Luke, while running into the kitchen to find me because Ella had been calling and I didn't hear her. She didn't even send him to get me because she had locked him out of the bathroom; he did it on his own. Maybe because he is a sweet little brother, or maybe just to make the yelling stop so he could play in peace.

"Luke, you are NOT THE SAVIOR!" - Ella, clarifying Luke's position in this world when he tried to interrupt Barbie Bible School. Yes, our Barbies go to Bible school, and no, Luke is not the Savior of the world.

"That was like a movie star restaurant!" - Ella, enthusiastically, after her first visit to the Main Street Tavern for supper. The food was good, the place was clean, we saw people we hadn't seen in a while, but I'm not sure I'd say it was a movie star restaurant. However, I am not four.

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.