Friday, November 30, 2012

Photo A Day

I've been struggling for inspiration to write (and also for time). Sure Dave and the kids offer new fodder every day, but I've been feeling like I need to keep those little nuggets of amazingness close to my heart instead of sharing them with the wide world. Otherwise, it's just life as usual - work, family, sleep, rinse and repeat - a seemingly boring routine for which I am very grateful, but not much to tell about.

Then, when I looked at my Facebook feed today, I saw that a friend had shared this list of photo a day prompts from Fat Mum Slim.

I'm no photographer, but I immediately started thinking of things I could write about these topics, so I decided, "Why not?" For the month of December, I'm going to try to write something every day, accompanied by a photo inspired by this list. Considering that I'll be on vacation for much of December, I can't promise that there will always be a lot of words with the photos, because the monkeys have built in radar that alerts them when I try to do anything that might even resemble a project that doesn't involve them. But I'm going to try.

I decided to start today, sort of as a practice round to get myself writing (something other than work things). So this is Day 0, and my work day started from the comfort of my living room.
Day 0 - Working from Home
This entire crazy year would have been so very much crazier if I had not had the flexibility to work from home and hospitals and doctor's offices and lawyer's offices and anywhere else I dragged my laptop along to. I'm usually very productive from home, working in my comfy chair with HGTV in the background, good coffee and minimal interruptions (obviously the monkeys aren't here). The increased productivity makes up for whatever crazy scheduling situation is keeping me out of the office. It's a lot of juggling, but I'm grateful for the flexibility because it means I get to go to school things and gymnastics and doctor's appointments and chemo without missing time at work.

Find out more about FAT MUM SLIM's photo a day challenges here: How to Play.

Tuesday, November 20, 2012

Thanksgiving Break

Good coffee. Good book.

"Now it is a strange thing, but things that are good to have and days that are good to spend are soon told about, and not much to listen to; while things that are uncomfortable, palpitating, and even gruesome, may make a good tale, and take a deal of telling anyway." - J.R.R. Tolkien, The Hobbit

It's Thanksgiving break at my house. That means the kids and I are home from school and work. There's lots of playing, a little cleaning, plenty of football (even at eight o'clock on a Tuesday morning because we have ESPN and it was Luke's turn to pick), and an excess of time to conquer our running list of things to do: paint, dance, read books, etc.

I have so many things to be thankful for this Thanksgiving but today I'll list the trivial: a comfortable book, good coffee, a warm house, little voices at play, and a child who just told me, "I'm an article." She meant "artist."

Happy Thanksgiving Week!

Thursday, November 15, 2012

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.

Monday, November 12, 2012

Monday Morning Update

Dave (and I) spent the weekend in the hospital getting IV antibiotics, playing Words with Friends, and watching movies. We didn't learn much other than that his white count hasn't really increased significantly. Also, his CT scan was clean, so there was no hidden infection.

His oncologist just visited to confirm that his bone marrow is normal - there is no indication of lymphoma or leukemia or any of the weirder forms of anemia. He firmly believes his body had an autoimmune reaction to a virus - and he's says we'll never know what caused it because all of the tests have been normal. He called it "isolated neutropenia" and says that it's just a random incident and we shouldn't expect this to be the new normal.

He also said if it is related to the lymphoma or the chemotherapy, "it's not known to be." I'm taking that to mean it's possible but he doesn't want to say that for certain. That's only my opinion, of course, since it's hard for me to separate what chemo does to the immune system from what happened in this situation. He also said he usually sees one or two cases like this a year, and he's an oncologist, so...

At any rate, now that they've ruled out The Big Scaries, he can start Neupogen shots. Neupogen is similar to the booster he got after each chemo treatment, and it will stimulate the bone marrow to make white cells. He'll have to get two a day until he reaches the normal level, and he'll still be getting IV antibiotics. Once his absolute neutrophil count (ANC) is 500, he can be released with oral antibiotics. Today, that count is 36.

He should be just fine once he recovers his immune system, so this is all good news. For now, our specific prayer request is for a rapid increase in his neutrophil count so he can go home.

As always, thank you for the prayers thus far. We feel them and we are so grateful.

Friday, November 09, 2012

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.

Thursday, November 08, 2012

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.

Thursday, November 01, 2012

Hallowing 2012

That's how Ella says it, "Hallowing."

We trick-or-treated Main Street again this year and this time, Dave went with us. As a gorilla. Seriously, he spent a couple of weeks dreaming up reasons to buy the gorilla costume at Target, and we've made use of it twice in the last week. He's been trying to expose Luke to it so that he wouldn't be scared, and he mostly wasn't. Dave opened the closet to show it to him Monday night and Luke said, "It not real, Daddy." He was excited and laughing about seeing a monkey when we picked them up at Grandmother's yesterday, but he got a little upset when that monkey called him by name. Dave had to take off the mask and gloves and let him get used to it, but by the time we left the house, he was okay - and happy to announce to everyone that we had a monkey trick-or-treating with us.

I think Dave had more fun than the kids, walking up and down Main Street, grunting at people and scaring small children. One lady wanted to have her picture take with him, and another fondled his plastic gorilla nipples. He was quite popular.
My Crew
I did put red Kool-Aid on Ella's hair, but it didn't turn red because it's just too dark. She settled for being Adella, Ariel's brunette sister. It was her idea to go as a mermaid sister, and we had to look up their names and pick one that had brown hair. She was completely okay with Dave as a gorilla except that she was a little put out with the shedding: "Daddy, gorillas shed because I found a gorilla hair on my mermaid dress."  
Adella, the brunette sister of Ariel.
We brought the wagon again this year because I knew that Luke would be too busy eating candy to walk. I was right. I don't even know how many suckers and Reese's cups he ate, but it seemed like he was opening another one every time I turned around. I did manage to get a piece of cheese and two "tickles" (pickles) into him for supper, and I counted that as a win.
Football player.
We met up with Aunt Becca just as she was leaving the bank with the cutest sack of cash I've ever seen.
Bank robber and her bag of money.
As long as that stinkin' gorilla stayed away from him, Jake was all about trick-or-treating and riding in the get-away wagon with Luke. 
Jake and Luke
After Main Street, we went to the fall festival at church and made a round playing games. Then we met back up with Rebecca, Nathan, and Jake at Grandma and Pop the Pop's house to trick-or-treat our neighborhood. This is the first year we've walked our neighborhood and the kids loved it. By the end, even Jake was piling in and out of the wagon with his pumpkin, to run up to front porches. Jake can't say "trick-or-treat" yet, but Luke can, and he alternated between that and "pumpkin patch" as his greeting to the candy givers. Also, I'm in love with their manners - thanking all the people for the candy; it was good to hear.

Once we walked the big circle, we went back to Grandma's house to eat chili and give out candy. It looked like we were conducting fire drills in there, the way they raced to the door when the bell rang. They do love to give out the candy.

Today, we end our busy week of fall festivities with Crazy Hair Day at school - because it's also letter H week. Ella opted for lots of clips in her hair.

Lots of Clips
Luke wasn't really on board with the whole crazy hair thing - having woken up with a candy hangover - but we finally settled for this big curl on top. I orginally made a nice swoopy faux hawk, but he wore too many things on his head this morning and flattened it, so I had to redo it. 
Every day is Crazy Hair Day for Luke.
The real craziness is going to happen while he naps and all that styling gunk works it's magic, that's when I'll need a picture.