Six Hours of Questions and Answers

Written at 2 a.m. Saturday, February 6th

Early morning in our house Friday, February 5th:

“Do I have any clean socks?” No.

“Is there a basket somewhere with clean whites?” No.

“Are there any clean towels?” Yes, the basket in the laundry room is clean. My laundry experiment: “Can I just do laundry on Fridays?” For two days in a row, I had dried off after my shower with single hand towels. If I buy more socks, more underwear, and a couple towels, I can do laundry just on Fridays. Except if someone has an accident in bed on a Friday night.

“Are we really out of bread?” Yes, even the supply that I depend on in the freezer is gone.

In the morning at MGH:

“Do you have a port?” Yes, but I’m done with chemo, so I want blood drawn from my arm. My port is closed.

“Can I really say I’m cancer-free now?” Yes, you were when you started chemo. Everything we are doing is to prevent it from coming back.

“Can I go anywhere and do anything?” Yes, your white blood cell count isn’t 100%, but it’s on its way up. If you get a fever at this point, your body can fight it. (Perfect timing: Will threw up two times – make that three – in the night. Polly Purell wouldn’t have dealt well with this.)

“When can I get this port removed?” As soon as you like.

“Will I have a full body scan every year?” No, there is no evidence to support the benefit of finding tiny breast cancer cells, say in your lung, or finding something after investigating symptoms six months later; research shows that the treatment and outcome would be the same. So there is no reason to subject your body to yearly radiation, nor your psyche to false negative findings. Remember this is a very theoretical discussion because everything you are doing significantly reduces the chances of recurrence. By the way, give your body time to get back to normal. You may look normal but it will take your body a while to recover. I tell my patients for every month of treatment – from surgery to the end of radiation – it takes a month for the body to recover. (Full recovery estimate: January 2011)

“Really? I feel great.” It may not take quite as long, but give yourself time. By the way, don’t be surprised if in a few days or a couple weeks you feel very emotional for no apparent reason. It could happen during the strangest times: you could start to cry watching a Superbowl commercial. Many people put blinders on and move through this physically. But you can’t trick the mind; it will catch up with you when it realizes what you have been through and what a significant step this is to have completed.

Still at MGH, waiting for an injection:

“Do you need anything else?” No, I don’t need this recliner over-looking the Charles. I’m done with chemo. I’m only here for an injection.

Late morning, talking on the phone with Marge, my friend of 30 years who has been reading my LHH posts and the comments:

“Do you know how lucky you are to have so many friends? But of course you know. Aren’t friends the best?” Yes……………………………… don’t make me cry right now ………………………………………. I’m out of bread; I’m parked outside the grocery store; I have to run in for a loaf so I can take Will a PBJ in a half hour for lunch.

Staying strong,

Linda

Where have I been? What happened to daily posts?

More often than not, I’m sleeping all night which has seriously affected my output of words! I miss that peaceful lull between 2 and 4 a.m., yet I’m happy to be heading toward normal.

I’m in the last Nadir period (low white blood cell count). With the exception of an annoying cough and sinus headache, I feel great. (Mom and Mary, I’m watching the cough and will go to the doctor if it doesn’t go away soon. My doctor said not to worry if I didn’t have a fever. No fever.)

Will thinks my hair is starting to grow. (I don’t think it is… he knows it will soon and is jumping the gun a little bit. :) I told him it may be a different color when it grows back. He wants it to be the same color as before, and I told him I could make it that way. He was puzzled. I explained chemo better than I explained the vanity behind coloring my hair.

Monday Bill left for a three-day trip to Vermont, after a very long Sunday night. I was coughing; Will had a sore throat and couldn’t get to sleep; Liam woke up at 1:30 a.m. screaming to go to the doctor. He’s been constipated on and off for a few weeks. Imagining the worst, I bundled him up and took him to the ER. The trip must have jarred him enough to make the pain go away. We pulled up by the hospital, and when I opened the door, he said, “Is this the hospital?” “Yes,” I replied. “Well… I’m not going in there!” We went in, and a very nice nurse met us. Liam looked 100% normal, and I looked like I was on chemo. She had to wonder which one of us was there for care. Liam immediately said, “No shots and NO tweezers!” He looked and sounded just fine, despite being doubled over in the kitchen 30 minutes earlier saying, “I need to go to the doctor. I need my Liam back!” After a conversation with the nurse, we drove home without seeing the doctor. There were definitely no symptoms of a bad bowel condition.

So... there is no shortage of material, just a shortage of early morning hours to cohesively gather words on paper.

Staying strong,

Linda

Tidbits from December

From a journal entry in late December:

I washed my wig today. That was weird. Only two cups of cool water in a bowl with my wig cleaner. Jeepers... pulling it out of the bowl I had to convince myself that it was a useful prosthesis and not just a big old hairball! After a quick rinse and a gentle towel blotting, I gave it a little shake. The style bounced back immediately. It dries on the wig stand for 24 hours and will then be ready to go.

My best Christmas chemo fog moment: We had friends over on Christmas Eve, and they brought a rib roast. Cara had it in the oven at her house, and we were just going to finish it off here. So I turned the oven on and then when the oven came up to temperature, Cara asked me to put the roast in the oven. “Sure.” I replied. I finished what I was doing then set the timer for 30 minutes, knowing I would forget to watch the clock while the roast was in the oven. Twenty minutes later Cara said, “Is this the roast that’s supposed to be in the oven?” pointing at the roast sitting on the stovetop. “Yes, but I did remember to set the timer!!” (My sister-in-law did this yesterday with a frozen pizza… and she’s not on chemo! Perhaps it’s busy-mom fog.)

Having donned my wig one morning, I knelt down to wash Cocoa Krispies from Will’s lips. “Mom, does it hurt when you take your wig off?” “No, watch…” and I took it off. Then he wanted to try, so I put it back on and he took it off. Then it landed on his head for a quick laugh. As I replaced it on my head, I reminded him, “Never take it off in public, outside of our house.” With that grin, he summed up the lesson. “So Mom, never pull off a bald woman’s hair!” On his way to becoming a true gentlemen.

We had a big gift in our house for Christmas: the Wii. The day after Christmas we set up each of our Wii characters with physical attributes. Bill, Will and Liam were first. Then it was my turn. My heart skipped a beat: What will my character look like? What will the boys want her to look like? We selected female and numerous hair options appeared – including bald! Kudos to Wii designers. We all had a laugh over my little character, especially when I was boxing. Completely bald, she has big eyes and red lips. She looks like her wig fell off getting into the boxing ring.

Staying strong,

Linda

Hodge Podge

Bill and Liam made it home last Tuesday from snowy England. They brought back English colds, but Will and I managed to avoid them. Leave the Purell Institute and that’s what happens. :) Will and I played a week-long game of Monopoly. It ended after seven days: I was bankrupt and Will owned nine hotels and three houses. I’ve never played a whole game of Monopoly; it’s not too fun when you realize you’re past the point of no return. I encouraged Will to load up on the hotels so we could finish the game in less than two weeks.

Our friends Tasha and Peter and their two boys flew in late Thursday night from Chicago for the long weekend. We had four stair-stepped boys – ages 4, 6, 8, and 10 – under one roof. Ours had a great time following the older guys. They looked like mountain goats playing in the snow on our hill. They thoroughly tromped around, bringing the bare dirt through the snow. Six inches of new snow yesterday has created a brand new boot canvas. Bill and Peter took the four boys to Boston on Saturday. They had a tour of Fenway Park and also visited the Aquarium. Meanwhile Tasha and I sorted four suitcases of clothes that she had brought out for Will and Liam. She got them into tubs and hauled them to the loft for me. It was nice to catch up and we got a few other projects accomplished as well.

On Sunday Bill flew to Costa Rica for business. Yesterday he visited a coffee farm: picked coffee beans or “cherries” and met two or three coffee farmers. He’s fascinated. They’re going “under the canopy” into the rain forest tomorrow. He returns Thursday evening, in time to go with me to my last chemo session this Friday.

It’s been just over a week since my last chemo session. Day 4 found me in a bit of an ornery state, not too willing to take pain meds and spend an afternoon in bed. I put on my big girl pants, my wig, and my lipstick. I packed 12 pairs of white cotton gloves in the van and ran some errands after dropping the boys off in the morning. Before going into the cleaners or making a return at Target, I put on a pair of these gloves. Then when I get back to the van, I take them off, dump them on the floor, and Purell. Even with those on, I try not to touch carts. After running two or three errands, I came home and kept moving in the house. Although I was achy when I finally went to bed, I was so tired I went to sleep pretty quickly. In the end, I took no pain pills this time around, not even ibuprofen. Moving and doing seems to help.

Staying strong,

Linda

Capturing Christmas Week in Quotes

While snuggling with Will and wearing my now infamous red Noddy hat, Will looks at me. I expect an “I love you,” but it is Christmas week. “You look like an elf!”

I’m dressed up in my bling and my wig, ready to go to a party, Will says, “You look great, Mom! No one’s even going to know you’re bald!”

Giddy from staying up past bedtime, Liam climbs onto my lap while I’m sitting on the floor. He gives me a monkey hug (with arms and legs) and says in a giggle, “I love you, Mom,” then he stands up and plants several of his signature wet kisses on my bald head. There are a little cool!

I bought firefighter and police tree ornaments for Liam and Will, respectively. While I was holding Liam’s – just about to put it on the tree, he screamed and I dropped the ornament, making a big chip in the firefighter hat. It’s now eternally marked with the volume of my three-year-old’s voice.

The goodnight conversation between Will and Bill. “I love you, Will.” “I love you more, Dad.” “I love you even more, Will.” “Dad, I love you so much my heart’s going to burst.”

Wishing you a holiday filled with heart-bursting love,

Linda

Jingle Bells

Yesterday was the first day of Christmas vacation. Will remembered our promise to let Liam sleep in his bedroom during this break. Both were excited, so out came the trundle. Anticipating the giddiness, I knew it would be a late night. At 9:15, I turned my light out to the sounds of them chatting and giggling. Then there was a patter in the hall, followed by Liam tugging the covers on Bill’s side, “I’m scared!” I replied, “You’re sleeping with your big brother; there’s nothing to be afraid of.” Tears. Not a lot of confidence in the big brother theory. I led him back to Will’s room and retucked him into the trundle. He was asleep by 9:30. At 9:45 Will was standing in the doorway. “Mom, you didn’t turn the temperature down. It’s loud in my room, and I need my heating bag warmed up.” Yes, I turned the thermostat down and put his corn bag in the microwave. At least one of us will go to bed toasty warm. By 10:15 Will was asleep.

Somewhere between 10:30 and midnight, Bill came to bed. At midnight, my alarm went off. It’s a new alarm clock and I had just plugged it in last night. Fumbling in the dark, I finally got it off. Ten minutes later the alarm went off. Good to know it has a snooze button. Again I managed to get it turned off. Ten minutes later… Obviously, I didn’t know how to turn the thing off. I whispered to Bill, “I need to turn the light on.” In a fully awake assertive voice, he said, “Do whatever you need to do.”

A couple of times in the night I heard the heat come on. It wasn’t a clanking sound like in Will’s room. It sounded like Santa’s sleigh bells. My first thought was to call the plumber in the morning and make an appointment to get the air blown out of the pipes so they would be quieter. My second thought was to listen for tiny reindeer hooves on the roof.

After I heard the sleigh bells two or three times, Will came into our room with a tummy ache. Probably too much popcorn. Bill got up as Will came into our bed. He reached up and grabbed thirty odd metal hangers off of our metal bed frame. I thought this was a strange chore for the middle of the night. “What are you doing?” I asked. In an annoyed and very awake voice, he said, “Every time the bed moves, these wire hangers that you left hanging on the bed clang together.” So much for the anticipation of reindeer hooves. I had finally taken summer clothes out of my closet yesterday, together with wire hangers to return to the cleaners.

A couple hours later, around 5:30 a.m. according to my clock, Liam cried out. Bill went to see him. He took him to the bathroom then found new pj bottoms for him. I figured he probably missed the toilet as he sometimes does. Then the “you’re-not-my-friend” screeching routine started. Quickly doing the math, I knew if this escalated, I would have a little boy awake for the day with way too little sleep.

Bill was in Will’s bed and Liam was screeching at him. I stepped on the trundle to get Liam and my barefoot felt dampness. “Did Liam wet the bed?” Exasperated, Bill replied, “Yes…” I got Liam into our bed with Will. Sitting in the dark and rubbing Liam’s back, I thought I could happily get up at 5:30 if the boys slept until 7:30. Then I glanced at Bill’s alarm clock it was only 4:30 a.m. In the turmoil to turn the midnight alarm off, I had moved my clock time ahead an hour.

Gentle, loud snores came from Will’s room. Slow breathing and teeth grinding arose from our bed. I could just make out two little heads joined at the top such that I knew their bodies were sprawled in a V over the whole bed. So here I sit on the couch, reminiscing about that magical sound of sleigh bells in the night and how nice it will be to have the boys keep one another company in the same room. This morning that happens to be in our bedroom.

:)

Linda

P.S. Bill, up and dressed at 7:20 a.m., just walked by me and said, "Well, they ended up sleeping together."

“My Hair Will Fall Out”

Back in September these were five words that I had to say to Will and Liam. Finding the time, determining the place, developing the set-up, anticipating their response, and forcing myself to just do it – these things were more stressful than any other moment since the day the radiologist gave me that undeniable “you have cancer” look.

I had already been through the “I have a little tumor of breast cancer and the surgeon is going to take it out.” Both understood my sore side and smothered me with gentle kisses (plus one strong kick), asked how I was feeling, and helped me get better with homemade cards. I recovered quickly from all three surgeries. Perhaps not completely back to my normal “farm muscle” self, but enough to take my sons to school, to pick them up every day, and to take care of them after school.

But now to deal with this next stage. There are scads of books on how to talk to children about cancer and chemo. I read through a few of them, none seemed just right. One started with two little girls in tears because their mother had cancer. Another described chemo as a shark eating the cancer cells and attacking some good cells along the way. Its downfall: the illustrations. The bald mother was bright green like an alien. I had no intent to be bald AND green.

I referred back to Cancer 101 that Bill and I had in our local pub after I was diagnosed. We were going to live in the moment. Some moments we would have to deal with cancer, other moments were ours to live as we chose. Cancer could not be a cloud lurking above all of our moments. From all the side effects that could possibly happen, I chose to talk specifically about what would be most noticeable to the boys.

Losing sleep over this imminent conversation, I had to just do it and be done with it. One day after school, I took a bag of hats to the living room and sat down with the boys, and I started my speech. “Remember the surgeries I had to take the cancer out? In a few weeks I’m going to take some strong medicine called chemo to make sure ALL the cancer is gone. And guess what, it’s going to make my hair fall out.” Will’s eyes grew to the size of the silver dollars his grandpa gave him for Christmas. “BUT, when I’m done with the medicine my hair will grow back.” His eyes normalized. “I have a bag of hats here and I’m going to put one on and tuck all of my hair in so you will see how funny I’ll look with no hair.” I put a hat on then let them each choose one to wear. The three of us went to work tucking my hair into a beanie cap. Liam got a big kick out of it, laughing with every lock he pushed under the hat. When the job was done, I said, “There, see how funny I look?” Will, our resident Michael Phelps fan, immediately said, “You don’t look funny. You look like a swimmer.” I grinned. Then I told them that I might wear a wig some times. I asked if they knew what that was. Will wasn’t sure. “It’s fake hair,” I explained. “Mom, I’m going to make a wig for you out of Legos!” That sounded painful, but I knew I would have to wear it if it ever came to be.

Switching gears away from hair, I went onto the second most likely thing that would happen. “There are days when I’ll be tired. I won’t have a lot of energy, so I will do something that you don’t like to do in the middle of the day, Will.” Will’s eyes grew again, “NAP?” “Yes, Will, I’ll take a nap.” He couldn’t believe anyone over three would actually want to do that.

From there I simply asked, “Do you have any questions?” Will did. “Can we go play now?” That was it. Our first talk about chemo was done. Will and I talked more in the days following. I pointedly asked on occasion if he had any questions about chemo. And for the first couple weeks he did, or he just wanted the same information repeated, especially when we talked about my white blood cells. From the Magic School Bus, he knows a little bit about white blood cells. He understands why I’m a drill sergeant when it comes to Purelling and washing hands.

Liam on the other hand doesn’t use or completely understand the word chemo, but I feel comfortable telling him “I’m going for chemo today” because we had our chat. Cancer and chemo are not taboo words in our house. Liam focuses on and understands more of what he sees: my scars. He checks them and then asks me, “Are they still owies, Mom?” Not any more.

We never did read about the green mom because fortunately I never turned green. We never read about the two girls crying because the boys haven’t cried over cancer. Keeping cancer where it should be, in its moment, has helped all of us deal with the cancer, the chemo, and my swimmer’s head.

Staying strong,

Linda

Flow

I heard this word a few months ago from an educator talking about how some children think, and even sometimes if we adults slow down, how we can think. As I see it, flow is giving your brain permission to have periods of distraction-free, unguided thinking and doing. I think kids, not yet programmed to time constraints and deadlines, probably fall into flow easier than adults.

I sometimes see Will and Liam go into flow-mode at home on the weekends. I used to worry a little with Will when I saw him sitting quietly, solemnly on the couch, just staring into space. He didn’t look happy, so I would try to implement my “make the baby happy” routine with little success. Then I heard about this flow thing, so I changed my approach with Will during one of these moments.

Me: “What are you thinking about?” Will: “Rockets.” Me: “Is it good?” Will: A slow nod. A slow blink. A slow turn of his head toward me. And a reply, “It’s fantastic.” And then I backed away, I took my toes and my fingers out of his flow. Later, whoosh! He flew into the kitchen, “Mom, I need a paper towel tube and some string.” And with that came the homemade rocketry project.

For Liam, his imagination and actions work hand in hand. If he sat still on a couch for 15 minutes staring into space, I would immediately feel his forehead to check for a fever. He has fallen head over heels in love with hand-held electronic games. He can sit for great spans of time, eyes locked onto the screen. I watch, imagining brain cells silently leaved his body through his ears. Will can play with these things for a half hour and then not touch them for a week. Not so with Liam. I wish putting a timer on would easily solve his little addiction. The problem is that our attempts to transition to another activity, such as getting dressed or eating dinner, end with tantrums. Including words that are against house rules. Last Friday, with steam coming out of my ears, and a probably a few brain cells, I told him all electronics were gone for a week. I boxed everything up and hid the box in Will’s room. To get Liam out of the house and into the van that morning, Bill told him he could have the hand-held in the future. This was a day or two after he and Will had had a great “play date” with Liam’s teacher. Liam gleefully agreed to be buckled into the van, then said, “So, are we going to my teacher’s house or to the future?” I told him we were going to the near-term future: school.

Sunday morning when Liam asked for a hand-held, I brought out the big book of Curious George. Liam perched next to me under a fleece blanket, and we read 307 pages of Curious George adventures. Flow. When I physically couldn’t read any longer, we flipped back to the illustration of how Curious George made boats out of newspaper. We made four and took two to our sleeping buddies upstairs. Intrigued, Will came downstairs and started a newspaper boat factory. It was in operation all day. Flow. Meanwhile, Liam built a pirate ship in the kitchen, constructed a fort in the toy room, and set-up shop with a Play-doh table, also in the kitchen. He rotated between these zones all day. Flow.

By late afternoon, we couldn’t walk without stumbling on a plank from the pirate ship or getting caught up in string attached to twenty boats sailing through the house. From outside looking in, it looked like a tornado had ripped through our house. From the inside… flow.

Staying strong and enjoying flow in the wee hours of the morning,

Linda

Rocket Fuel

Sunday morning was a PJ morning. (Coincidentally, my bottoms and top happened to match!) Late in the morning, Will droopily walked into the kitchen and with big sad eyes and a dejected voice said, “Mom… I need rocket fuel.” Before I could respond, Bill replied, “Will, I’m going to the garage right now.” I got a wink, a nod, and a thumbs-up before he went out the door. I saw only electrical wires come into the house.

Friday we stayed at school a bit longer so Will could fly his rocket down the big hill. He had made it: a paper towel roll body, a paper nose cone and a Kleenex parachute. He spent several minutes testing the rocket – throwing it up into the air, spiraling it straight forward, and releasing it while running.

Forty-eight hours later, and after spending Saturday with Bill and another dad/son combo at a Legos convention, Will is asking for rocket fuel. I rarely halt any experiments, unless they involve hot water or fire. Or a toilet bowl brush. And now, rocket fuel. My presence in this house gives the scientific word “control” a whole new meaning in experiments.

During our PJ morning and before breakfast, there was an hour or so of great peace in the house. At one point it was so quiet, I was convinced that Will was probably building Legos in the toy room and Liam was taping some trains together in the living room. I knew they were not together. But then I heard giggles. They were great buddies this morning! I briefly thought about joining in, but then I remembered a line from when they were babies, “Never try to make a happy baby happier.”

Fifteen minutes later, I couldn’t resist, I had to peek. They were in the living room inside a house they had built, complete with fleece blankets and pillows. About the same time I saw them, my other senses kicked in. I smelled chocolate. I heard Liam, in his not yet perfected whisper, “Will, can you open this?” Giggle, giggle. Chortle, chortle. Between the two of them was a gallon bag of Halloween candy. They were absolutely giddy when I busted them. They had pulled one over on me. They knew. I knew. “How many have you had?” There’s my Will, the oldest, the pleaser, “None.” Then my Liam looked at me, grinned and shrugged.

No shelf is out of reach in our house. High shelves are just bigger challenges with greater rewards.

Staying strong and trying to stay one step ahead...

:)
Linda