I'm Not a Stepford Wife, and I Think That's a Good Thing

Update on Husband: As he is in generally good spirits and feeling pretty well, Husband and I had a date last night -- probably the last date night out for a long time. We got the kids a pizza to eat at home in front of a movie, and then the two of us snuck off to our favorite Chinese buffet, where Husband made wiser eating choices than usual (I, on the other hand, couldn't resist the honey shrimp and those wonton wrapper things full of cream cheese, crab, and spring onion). At the end of the meal, my fortune cookie delivered a pearl of timely advice: "This is a time for caution, but not for fear."

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I've decided to divide my blog posts this way, with an update on Husband's progress at the top so those who want to know how he's doing can do so easily without wading through the miasma of my own obscure observations on whatever pops into my head and tells me (however falsely) "THIS would make a good post!"

The last couple days have reminded me a lot of how I felt several years ago. I went through a depressing period of wanting to be a Stepford wife. Do you remember that movie? Sure, there's the more recent version with Nicole Kidman and Matthew Broderick (hello, pre-teen crush!), but the older one was more frightening. In case you don't know what I'm talking about, here's a brief synopsis: a couple move to the town of Stepford. They're somewhat in crisis, and the wife gets to know some of the other wives in town. She notices odd things after a while about the women. They all seem perfectly content, and from a male perspective, like model wives. It turns out the men of the town are getting rid of their pesky, individualized women and replacing them with robots, who are perfect in every way.

Now stop laughing so hard. Yes, that IS a movie.

So, anyway, I spent a while wishing that I could completely subsume my own desires and needs in order to feel no tension between what I wanted and what I needed to do for everyone else. If I could become a Stepford wife, I reasoned, conflict would vanish and I would be serenely content to see to everyone else's needs with no thought of my own. I set about to become this model woman.

AND FAILED MISERABLY!

Turns out, I can't turn myself into a robot. Who knew? But it was part of the path that led me to where I am, which is learning the art of balance and that I am just as important as everyone else.

The last few days, as I've pondered what it will take to be a caregiver and nurse to my husband as he undergoes chemotherapy and the subsequent recovery, mom to six children with somewhat hectic schedules, write the articles that bring extra and necessary income into the house, and keep our home as clean and sanitary as possible, I found myself wishing to become a robot again. The final straw landed on my back when I realized I'd now given over my blog, my precious little real estate of me, to updates about cancer. I don't resent keeping everyone informed, of course, but it occurred to me that I would end up resenting the idea that the only reason I could justify writing this was to have people read about Husband's cancer. I know, it's a horrifyingly selfish thought, but this time around, I am a little more wise. I examined the anger and guilt and identified the underlying cause. Then I set about again finding a balance between my needs and the needs of my family. I think I've come up with a schedule that will allow me to get my exercise (which I dearly love and which I've been missing) and accomplish just about everything else. There will definitely be days I don't get to make a check mark against everything on my list, but I'll try my best and forgive the rest.

My husband, bless his heart, doesn't want me to quit the choir I love so much, either. I look forward to those two hours every week with a passion I find surprising. I love the challenge of the music, the ability to blend my voice with others into a tapestry of sound. It's like getting eight hours of refreshing sleep to spend that time singing.

UPDATE: Good News in the End

Husband just got a call from his doctor at the Huntsman Cancer Institute. The hematologists are finally ready to make a diagnosis of Atypical Hairy Cell Leukemia. That missing protein threw them for a while, but it wasn't looking like the hairy cell leukemia variant. Atypical hairy cell leukemia is even more rare than the variant, but the cases so far have responded as positively to treatment as classic hairy cell leukemia. Husband asked the doctor a couple times how sure they were about this diagnosis, and she said, considering doctors and hospitals from all over the world send blood samples to the Huntsman Institute for examination by the hematologists, she's pretty happy to back their diagnosis.

Imagine our relief!

Chemo starts Monday morning.

Is There Such a Thing as Too Much Garlic?

Husband's breakfast: steel-cut Irish oatmeal with honey and dried cherries.
Husband's lunch: steamed cod fillet with parsley sauce; roasted yams with a little butter, salt, and pepper; and steamed, chopped collard greens with creamy Caesar dressing.

Thank you, thank you! Yes, I can still cook. I made all of it myself, except for the creamy Caesar dressing. I have also roasted extra yams and two heads of garlic. It may be a myth that vampires hate garlic, but cancer really does hate it. I hope to have Husband smelling of garlic through his very pores. To that end, I am making roasted garlic and red pepper hummus with whole wheat pita for his snack. This new mode of eating means I am going to have to get very organized about how I feed him, since it's so time consuming. You can't buy a lot of pre-made healthy stuff for reasonable prices, so it's up to me to make it. Totally worth it, of course, if it keeps him around longer.

The kids are fine. We have made sure they are not worried, but have given them information according to their ages and maturity levels. Sian and Gabrielle know the most, of course, and Little Gary has not a clue. It's nice to be three sometimes.

People keep asking me how I'm doing, and honestly if I didn't have a healthy sense of hope and faith, it would be a lot harder to deal with all of it. My parents have been here, helping us, and that also makes it easier for me. I have this underlying and constant feeling of peace. However it works out, I know without a doubt that a)Husband will not live on this earth one moment less than he is meant to, and b)I and the kids will be okay should the worst happen. ("Okay" is somewhat relative, I guess, but we would continue with life and still be able to find joy, despite our sorrow.) I only suffer emotional breakdowns once in a while, but usually my mindset is that if I can't solve a thing by worrying about it, then there's no point in worrying about it. I'll just do what I can.

Meanwhile, I sure am glad for my friends. So many people have kept us in their prayers, spoken heartfelt and kind words, and offered service in whatever it is we need. For days, the women in our ward have brought us dinners. I can't even tell you how much it means to me to know they are thinking of us.

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I don't even know where to take this blog anymore. I am going to keep everyone updated on what's going on, of course, and beyond that, I think I'll just let things go where they will as far as this little speck of a site in the whole worldwide internet community. I enjoy writing this because it is relaxing for me to write words I am not paid for. I enjoy writing, and this blog reminds me why I keep doing it, even if I don't rewrite and edit my posts like I should. I know you can forgive my mistakes in that department, remembering that I am, after all, just a girl coping with life.

Patient UNO Player

Finally, I am posting the little video of my brother I wanted to show you. This is Aaron with Little Gary and Elannah, patiently playing UNO. Every time he comes over, he indulges my children by playing game after game, which is something I don't often do with them. They absolutely love it, of course. After a while, he'll pull out the guitar and, like last Sunday, play a blues riff while they sing the blues they spontaneously make up on the spot. The next video of him I post will hopefully be of his classical guitar-playing abilities.

Happy belated birthday, Aaron. You're a wonderful man, brother, son, and uncle. Now, when are you getting married? (sorry. that was from the kids. Ha ha ha)



In the news of cancer department, there really isn't any yet. No solid diagnosis, and they're not starting chemo now until possibly Monday. When Husband called to see if they had any answers for him, they admitted that they still are not sure what it is. They're thinking that it might be the hairy cell leukemia variant, which isn't quite as nice a leukemia to have as the classic hairy cell. We were quite depressed about that for a while today. However, we rallied as we talked about nutrition and how the body will cure itself if given the right tools. Starting from now, Husband will no longer be consuming sugar or refined flours, as those are cancer foods. It will take a bit of adjustment, but I'm determined to feed him the way I should have been feeding our whole family for all these years: lean proteins, whole grains, legumes, plenty of fresh and frozen vegetables and fruits (fruits in moderation, and with meals), along with probiotics and prebiotics, and good, clean water. He'll also need to be consuming all his vitamins and minerals, so somehow I need to get him quality supplements.

I took him to the thrift store today, where he bought a bunch of spiritually inspiring books. It wore him out to go, but he figures he's watched enough TV and he's done wasting so much time. It doesn't matter how much time he has left -- whatever he has left, he's going to put it to good use and learn quality stuff. When he got home, he played a long Monopoly game with Elannah, and afterwards, he hung out with Joseph in the family room.

I will post little updates on Husband's well-being, but I'm not going to dwell on cancer until we know what it is. At this point, it looks like we won't know until Monday.

Back to Square Two

The doctors have reneged on their diagnosis, which I think is totally unfair; I had already called "no take backs!" They explained that there was a miscommunication between the doctor and the pathologist. Apparently, those hairy cells he was looking at are missing one of the protein markers that makes a definite diagnosis of hairy cell leukemia possible. From what I understand as a non-doctor-type person, this means we're back to figuring out exactly what type of leukemia Husband has. It could be hairy cell, it could be something else entirely. They promised to phone us with our fate within the next 24 to 48 hours.

Husband had to scramble when he found that out. Obviously, they won't start chemotherapy until they know exactly which type he needs, so the start date was put off until Thursday. Husband had already arranged for a substitute for his classroom, so he called the principal of his school and told him to hold off on the sub until Thursday, as he needed to go in to work and draw up some plans for the sub anyway. The doctor gave him permission to work for two days, provided he didn't take any heavy blows to the abdomen.

After we got home, I answered a call from Husband's parents, who gave me a very thorough and detailed chastisement for Husband even thinking about taking the 40 minute drive into work, not to mention the dangers of being in a room full of rambunctious and germy fifth graders. I was on their side, of course, but I felt it wasn't prudent to point out that he got his stubbornness from somewhere. Husband pointed out that he had been going to work for nearly two weeks already with an enlarged spleen before he was diagnosed. That was after I hung up the phone and he was chuckling that he was glad he hadn't answered.

He completely underestimated how tired he would be, though. He's not used to being anemic, and I think he thought a good nights' sleep would set him right by morning. I insisted on driving him in to work, and we put a double padding of foam between him and the seatbelt, just in case. Nothing happened during the drive, fortunately, but he's decided to get his sub plans together and have the sub start tomorrow instead of Thursday. It's a compromise.

Still, I'm not answering the phone for a while.

The Worst Weekend Getaway Ever!

One day nearly two weeks ago, Husband came to me and said, "Does my left side feel firmer than the right?" I pushed on his abdomen for a while, and yes, there definitely was a firmness in his left upper abdomen. Several days later, he came to me again.

"It's bigger. There's something in there. I can feel it."
There was something in there. I could feel it, too. The next morning, I scheduled an appointment for him to see the doctor and get it checked out, but the soonest they could fit him in was nearly a week away.

It was a long week. As his side got firmer and more uncomfortable, Husband tried to do some research on the internet to explain what might be happening. Scary, scary things showed up.

One day, he started a sentence with, "If I die..." We had a long conversation about what I should do if he was no longer here. We have life insurance, and he wanted me to be able to pay off the mortgage and the student loan and take the kids on a vacation somewhere. He told me that one day I would find someone else who could take care of me and love me, and that would be okay. I hit him, but gently, on the right shoulder, because I didn't want him talking like that. I can't imagine not having him here, making me laugh, loving me, loving the children, my best friend.

I held it together pretty well, I thought. I didn't have long crying jags and become hysterical. Husband, impatient, managed to get an earlier appointment with another doctor, and she ordered blood work and a CT scan of his upper left abdomen. Husband took the day off work to have the scan done, and then we waited and waited for the results. The night he had the CT scan is when I broke down. All the waiting and wondering finally got to me. We were watching an episode of Doc Martin -- the last episode in the latest season on Netflix -- and when it ended, Husband turned and looked at me. He had his arm around me while we sat on the couch. He leaned his face against mine. And I just started bawling. Big, heaving sobs, tears everywhere. He held me and rubbed my back.

The blood work came back with some odd numbers, and the doctor wanted to repeat it. Husband went back in to give them some more blood, and the doc was in a telephone conference with some of the specialists at the Huntsman Cancer Institute. For an hour they talked, and then the doctor came out of the room and told Husband to get himself to the Institute that night (Friday, Sept. 10). His spleen was five times bigger than it should be, and they were so worried about it rupturing that they didn't feel he could wait until Monday to go to the hospital. Obviously, sending him to a cancer institute had other implications. While I drove him to The Big City and to the institute, perched high on the side of a foothill, with a commanding view of the entire valley, we tried to joke around that this wasn't the kind of date I was expecting to be taken on. I only teared up once, but because I was driving, I forced the tears back and drove carefully.

The Huntsman Cancer Institute is beautiful. The architecture and materials are breathtaking. It's almost like a hotel, with its dark, rich wood, marble and granite inlays, and two-story walls of soaring windows. Husband's room was also beautiful, for a hospital room. One wall was entirely glass, overlooking the valley; at night, all the lights of the city twinkled cheerfully, life going on below us. Even the food is excellent.

Friday night was mostly about answering detailed questions about Husband's medical history and the medical history of his family. The doctor, a lovely young girl from India via New York, obviously couldn't rationalize Husband's story of being born with a hole in his heart that spontaneously healed after being given a blessing by his father. He told the doctor how his mother watched Husband's tiny little fingers go from blue to pink in a few moments, and how the doctors who were set to perform surgery later that day could no longer find anything wrong. Our doctor was puzzled by that, and gave us some explanations as to why it might be possible. It was okay that she couldn't believe in a miracle. What endeared me to her the most was that her father called her twice while we were talking and I saw the respect that showed in her eyes when she saw the number. The first time, she answered in Hindi and obviously told him she was with a patient. The second time, she said, "I need to take this call. It's my dad." She was only gone for a couple minutes, but she needed to take his call. Good girl.

Saturday morning, everyone wanted a piece of Husband. The phlebotomist took so much blood, I told Husband he was much lighter on the right side than the left. The doctor for that day took a bone marrow biopsy, which was painful. She couldn't get any bone marrow, as the cells were too tightly packed, so she had to dig out three core samples. So many people wanted some sample of this or that, or to ask questions or perform some test, that by the time I had finally convinced Husband to eat some lunch (he hadn't wanted breakfast), it was nearly 2:00. I was reaching for the phone to order him food when the nurse came in and announced that two CT scans of the chest and lower abdomen had been ordered, and because of that, he would need to take the next two hours to drink a barium shake. No lunch.

He didn't get lunch until dinner time. He was exhausted and no one had been able to give us any answers. The phlebotomist (the doctors and nurses called him the vampire) had been back three times for blood. I was surprised Husband still had any left. We were worried. We sat there sort of watching cowboy movies on television.

It wasn't until Sunday that the answers came. The doctors were doing rounds in a large group, and they were standing outside Husband's room, conversing about Husband's symptoms. Our efforts to eavesdrop were severely hampered by the cleaning lady who showed up and made a racket tidying things up. Finally, the crowd came in. Husband said, "It's really hard to hear you guys." This first doctor who came in laughed and said, "That's why we're coming in here." They crowded around the bed, and the head doctor, a lean, blond woman with a kind face, told us that yes, it was cancer, but it was one of the most easily treated cancers there are. It's called hairy cell leukemia, and it has a 96% remission rate after treatment. The other 4% can be taken care of with other drugs.

After they left, I choked up. Relief, I imagine. The phone rang, and it was Husband's mum, calling at the perfect moment to hear the diagnosis. I handed the phone to Husband.

Husband will have chemotherapy for seven days. The doctors will closely monitor his blood levels and watch to see if his spleen is shrinking back to normal size. Once the cancer is in remission, it can stay in remission for years. People live a normal life span with hairy cell leukemia. There's every reason to believe that Husband will be just fine.

All the family is informed. I came home yesterday to see my children, who have had their uncle and my parents taking care of them so I could stay with Husband. Husband will be released tomorrow, and he'll take the week off work while he has the chemo. A classroom full of germ-riddled fifth graders is no place to be with a compromised immune system.

This is already severely long. I'll write more another time, and I will get that thing posted in honor of my brother. I'm going back to the hospital today to see how Husband reacts to the chemo. Cross your fingers.

Everyone should have a brother like mine

Happy birthday to my wonderful brother, Aaron. I had something planned that I was going to post, but Aaron is currently taking care of my children while I sit in the hospital with Husband, getting test after test done to figure out why his spleen is so enlarged and why his blood tests keep coming back all weird. I'll post it as soon as we get home.