3 down 5 to go!

Home and snuggled in bed with my cherubs! All went well today; I had a view of the Charles River. Bill's in China, so a college friend and her daughter, who is my god-daughter, came out from Chicago for the week. They dropped me off at MGH and then came back to pick Will and Liam from school. Then my neighbor brought me home. All worked like clock work! (Thanks, guys!)

My port finally worked with my head between my knees. I'm looking for a mounted camera next time and perhaps taking a game of Twister.

Bill returns at midnight tomorrow. So Sunday will be a "Mommy, Daddy, Will & Liam" day!

Have a great weekend!

Staying strong, Linda

My wicker life boat

My wicker life boat is floating nearby again. I’m a day away from another round of chemo. Now I pull my life boat out only in the morning and at bedtime to brush and floss my teeth and take two little pills. Since early October I have kept my toothbrush, floss, toothpaste and towel quarantined from the other Tinkler germ havens. Although we try to contain everyone’s toothbrush in a separate glass, on occasion there has been an obvious game of musical toothbrushes held in the bathroom. I don’t want my toothbrush involved in that.

Tonight I’ll review the inventory of the whole boat, making sure every anti-nausea med is in place and reviewing the specific anti-nausea directions through Day 5. Next I consider the side effects of the anti-nausea meds and make sure their antidote is in place. And if the first concoction doesn’t work, there’s another level to resort to.

Tomorrow night I’ll take the basket from its cupboard in the bedroom, and after rifling through it at bedtime, I’ll move it to the kitchen counter. That way when I wake up at 3 a.m. I won’t be pawing through a cupboard to find it and jiggling pill bottles upstairs. I can turn a light on in the kitchen, evaluate and diagnose and treat without interrupting my sleeping beauties upstairs.

I keep it tethered close by the first week as I watch the clock and take meds as directed. I don’t wait for the feeling to drift by. I’m determined to avoid it if I possibly can. By Day 4, my gratitude for my wicker boat grows thin. While I appreciate it, I’m tired of having it so close. Finally, around Day 7, I release the line and tow it at length behind me, thankful I only need it for normal tooth maintenance and two little pills, once again.

Staying strong and afloat, Linda

Power and Prayer

Power. For me, being treated for cancer, especially going through chemo, means losing power and control. No choice. Every person facing this comes to the table from a different life journey. I've always felt that I'm the protector of my children. Previously invincible, now, I've become the protector of myself, and as that, I’m going to maintain as much control as I can. I own it and I have to do what’s right for me and my family. In a way this is a new position of power. This is a full-time job. Along the way, in June and July, I had more fear and anger than feelings of power. But, Bill and I made sure then that we had complete confidence in the doctors to whom I had to turn the physical power over to.

Fortunately, people told me to take care of me, and do what I needed to do for myself and my family. I learned how to accept help from friends and strangers.

Fortunately, every person I reached out to who had experienced cancer has grasped a hold of me. Each has cast a rope around my waist, destined not to let me sink. They are pillars standing on the shore of a rocky sea they’ve already sailed. From family members to women who were mere acquaintances or absolute strangers, I have strong and formidable women who hold the ropes that are stabilizing me. They talk with me at 11 p.m. from Iowa. They told me what day to expect my hair to fall out. They warned me that my bald head would be cold sleeping. They laughed at me when I thought perhaps I should go to the ER after cleaning a toilet and getting light-headed. “You goofball! Open a window and take some deep breaths!” I am in a fit of laughter writing and thinking about that phone call!

Fortunately my pastor, in addition to his compassionate listening, said, “I really feel you will come out on the other side of this,” plus words to the effect that God can take anything I can dish out. I have had words with God. I have prayed and I have prayed aggressively. I have explained exactly where I stand with this. In my mind and through my writing, I have stood in the middle of a corn field in Iowa screaming at God. Then I thought perhaps He couldn’t hear me through the 8-foot high stalks of corn. So we took it to a hayfield. And I really screamed at Him.

I’m lifting from a journal the following that I wrote the last day of July. It’s actually written to you but back then I was too close to it to share with you. It’s raw footage of a different place than where I am today.

July 31, 2009 I think faith is a very individual personal decision, and I tend to keep it that way. However if you are someone who prays and are stumped, as I’ve been, about what to pray for us, I’ll share with you what I pray for. While I’m thankful for much, there are days when I pray pretty aggressively and angrily, which I have never done before. I’m sure that we, He and I, have an understanding that whatever comes out is indeed a raw passion for life and the commitment I have made as a wife, a mother, a daughter, a granddaughter, a sister, a cousin, an aunt, a niece, a god-parent, a guardian, a friend…. So when that passionate fire burns raw in my conversations with Him, I remind Him to be prepared for me to live life with a zest and a fierceness I seldom if ever have experienced in my life. With that said, this is my prayer.

“God, I thank you for all the gifts in my life.

I pray for daily blessings, including those small and special or large and complicated. For those that appear blemished.

I pray for your grace and that I in turn am graceful.

I pray that I feel the power of the Father, Son and Holy Spirit move through me every day.

I pray for strength and courage in all that I do.

I pray for wisdom in all decisions I make.

I pray that the cancer is contained, controlled and cured.

I pray for the doctors who are helping me. I pray especially for my surgeon’s expertise and thank you for her compassion.

I pray for those special women in my life who have had cancer and for those who are fighting it now. Thank you for putting these strong, formidable women in my path.

I pray for all of the people who will help me on this journey.

I pray for others who are ill or suffering.

I pray for my parents, brothers, sister and family. Please give them comfort as I know they are worried about me. Remind them daily that I am from strong stock: Murphys, Mills, and Iowans.

I pray that I live in each moment and truly see the beauty that surrounds me.

I pray for “Mommy, Daddy, Will & Liam.” We are a family of four with long full lives to lead together.

I pray all this in your name… Our father who art in heaven…”

And this is what I carry with me in my pocket on a prayer bracelet every day. And I pray this prayer not normally in tears but with great hope and tremendous faith.

And there are days when I so wish for an Iowa corn field to scream in – so, if you have one and feel the urge, go pray aggressively in it for me!

This must be the angry stage. :)

End of journal entry.

August 1, 2009, was a new day with a new sense of peace.

Staying strong with a pocket full of prayer, Linda

(Here's a prayer from another pocket.  My Granddad's Pre-Sermon Prayer.)

Perspective: a quick glance back to put the present in focus

Growing up in Iowa, I was lucky to have grandparents that were a big part of my life. Five that I remember events with, six if I count the picture of me with my great-grandfather when I was about two years old.

Grandma Mills is a letter writer and she went “green” before it was the thing to do. She, like her mother, is from the waste-not-want-not generation. From the letters Grandma has sent me over the years, I could publish quite a collection of recipes and pieces of advice – from how to remove a catsup stain to how to deal with cancer. She is a breast cancer survivor. I keep her most recent letter, written in July, on a shelf in my living room. It’s on stationery with a collection of tiny song birds and the words “Faith brings strength and hope.” This is what she wrote to me about her experience: “Well, I survived all that and am still kicking at 91 years. With age comes a lot of aches and pains, but they soon go away and don’t develop into anything. I just enjoy the beautiful world…” Grandma turns 92 this year. Hence my 50 year request to the surgeon… I’m 43 now. I’ll probably be close to 44 when I get to challenge Grandma to our next game of Scrabble.

Great Grandma Whittier, Grandma Mills’s mother, took care of me when I was little while Mom was out selling Avon. Unfortunately, I do not remember her voice, but I do remember the sound of her dentures clicking. She looked like a tiny Aunt Bea from Mayberry. Dress, apron and step-stool next to the kitchen counter. She taught her great-grandchildren the importance of self-sustenance. She kept graham crackers in the drawer under the oven. We all remember where the graham crackers were stored, and we all knew how to open the drawer and help ourselves.

Grandma Murphy’s orneriness drove us all a bit crazy at one point or another throughout her 89 year life. Few could argue that that spunk is what undoubtedly kept her alive for so many years. In her mid-80’s, she fought hard to keep a leg that was slowly succumbing to poor circulation. Finally, she realized to get rid of the pain the leg had to go. After she came out of surgery and recovery, she looked at me and said, “I haven’t looked at it yet.” I said, “Do you want to?” and she nodded. So I took the covers off so we could see her “stump” as it had been amputated just above the knee. It was all wrapped up meticulously in white gauze bandages; no sign of the pain she had endured for years. She looked down and said, “Aw hell, that ain’t bad.” This woman was gored by a bull in ’55, struck by lightning in ’60 or ’61, and poisoned by carbon monoxide from a furnace in ’71. Her fingers were mauled by an end gate seeder in ’77. Neighbors attest that she worked harder than most men. She milked cows by hand and threw bales of hay to the rack as they came off the baler. She sweated. (Truthfully, no one in Iowa perspires – farm work makes you sweat.) Looking at this pristine white bandage seemed tame compared to her catalog of life experiences. Her standard reply when asked how she was feeling: “Like I could kick the side out of hell!” I’m sure the devil flinched.

Grandpa Murphy was called Scoop. Although incredibly gruff and at times downright scary, he had a soft spot for his grandkids – as long as they were quiet and behaved. He could let loose a line of cussing and bellering that was simply unbelievable… and then he wouldn’t talk for a week. My last memory of Grandpa was when I was 10 years old. He called me into his bedroom and told me he was going to die. His fight was the first time I remember hearing the word cancer. His farm gusto was no match for colon/pancreatic cancer, probably undiagnosed for years.

Granddad Mills was a man of few words and little cussing, if any at all. Next to his hearty laugh, his prayers before dinners are how I remember his voice. He started grace the same way before every Sunday dinner, Christmas dinner, birthday dinner, and bullhead fish fry. While the prayer fit the occasion, to my ears it was always the same, perhaps more so in cadence than in words. I so wish I could remember the whole prayer; it was full of grace and truly beautiful. One piece of his thanks-giving was something like “Bless the hands that prepared the food for the nourishment of our bodies.” His prayer seems fitting for the many hands that have prepared healthy protein-packed meals for us over the last few weeks.

Thank you for the food, the notes, the help, the thoughts, the vibes, the prayers, the talks, the laughs, and of course, for perspective.

Staying strong, Linda

(Fast forward... Here's a tale about Grandma Mills' plant that is now in my care... Untying the Mother-in-law's Tongue.)

PJ Clash

This morning when the sun came up, I looked down to see a dark turquoise blue PJ top and purple and lavender plaid PJ bottoms. It’s been worse. Today I looked in the mirror thinking, “Why am I not matching? How does this happen?” I do laundry. I put matching shirts and bottoms together in the closet. At 7 a.m. I’m wearing a brown and white diagonally-striped top and green and white flowered bottoms. The boys rarely match, but I I’ve decided I would rather say, “Hey guys, why don’t you go get your pajamas on!” than dress them. Their pajama choice is potluck and I’m OK with that. They are 3 ½ and 6 years old.

I’m 43, waking up with worse top/bottom combinations than my children. But I’ve worked it out. It’s my middle of the night wake-ups. I get up and fumble around for my PJ bottoms. Creature of comfort trait: I never put them in the same place when I take them off to go to bed. If I can’t feel them lying on the exercise bike or over the end of the bed, I make my way to the closet and get a clean pair out, normally without turning on the light. I’m balding and my pajamas look like they’ve been in a train wreck. What a morning sight. Perhaps I could stick to solids and leave the patterns out of my PJ wardrobe. It would help a little. But that would mean getting rid of these lovely comfy broken-in PJs.

Speaking of morning sights, I got my Fed Ex delivery last Thursday. I opened the door, fully dressed – in case you were wondering – and smiled at the delivery guy, not my normal guy. He returned my smile, kind of. Then it hit me. “Oh, I’m sorry! I forgot to put my wig on!” “Thaaat’s OK!” he said cheerfully, sounding a little like Norm from Cheers. Then I looked again at his slightly embarrassed blue eyes and said, “Actually, we look a lot alike!” He was bald. We could’ve been brother and sister. I’d love to know how he is telling the story.

Staying strong, Linda

Warm Peas in a Pod

After the hour-long struggle of getting the boys to sleep in their own beds, both were in my bed asleep at 9:30 last night. Will cannot stand the sound of the heating going on. The bang, crash, wallop as the water creaks through the baseboard. He was in tears over the clanking. Every time I went into his room it stopped. “It doesn’t do it when you come in.” Finally, at 9:18, I heard another wail, pure misery. I called out to Will, “Come talk to me.” With that I heard two sets of feet scramble down the wood floor hallway. Will came to my side in tears, “I really can’t take it, Mom.” “Get in,” I said. Will scrambled in from the other side and tucked up next to me. “Yeah, Mom. Ahhh, I’m scared too.” My thought, “Liam Malcolm you are not scared. You are riding on your brother’s coattails. My voice, “Get in.” Liam bolted for the other side and lay down next to his brother. Instant calm. Both of them went to sleep in five minutes, side by side, no poking, no fighting – making me rethink bunk beds and putting the boys in one room to keep each other company. I asked Will about that idea this morning, wondering out loud if it would work. “Of course it would, Mom. We’re brothers; we love each other.” Do they get lessons in pulling heart strings before they become our blessings?

:)

Linda

Minor Changes

I wake up in the middle of the night and can’t get back to sleep. This chemo process has rewired something inside because I’m not always tired enough during the day to take a nap, except on Days 5 and 6.

Days 4, 5 and 6 after chemo are different. I’m a bit foggy on those days and a bit achy on days 5 & 6. Again, I’m done deciphering “why” and trying to get comfortable with “I am” and going with the flow, with the help of a little Ibuprofen. The slow flow of not doing too much other than sitting with warm corn bags on my shoulders and a cup of tea and perusing catalogs for Christmas ideas. Then boom. That elusive nap happens. I pull on my cap and take a nap.

Then on Day 7 I wake up and feel different. No aches.

I feel full Days 3 through Day 6. I’m going to take Nexium next time round. It’s not a nauseous feeling, proven by the fact that Bill’s tortellini and meatballs smelled so delicious last Sunday night. I just felt like I had no physical space to put food.

Through Day 7, sadly, coffee does not taste good. My strong, dark Sumatran Reserve tastes revolting all the time. I brew a cup of Breakfast Blend or a cup of tea and gently sip at it. Lack-of-caffeine headaches are second on my avoidance list, not far behind nausea.

My Trident mint gum is also revolting. I never thought I would be a watermelon-flavored gum person. But it tastes best. Liam agrees.

My appetite from Day 7 on has grown. My oncologist said it could be attributable to the steroid in those first few days of pills. My body needs a lot of protein. I used to be a granola-bar-on-the-way-out-the-door breakfast eater. Now I have that before taking the boys to school. Then I go home for my new standard: two eggs, meat, cheese and two pieces of toast. Or my latest and greatest: grilled meatloaf and cheese sandwiches. Yes, for breakfast. When my sister visited in October, she made a huge batch of meatloaf and froze it in individual squares. We thought it would make for easy dinners, but it’s been useful for solid breakfasts! I’m eating bigger portions but my jeans are not getting tighter.

(Detour: Within six hours of writing this, sausage is too spicy. One bite sets my mouth and throat alight. Wow. I dug through the garbage yesterday to make sure Peapod didn’t mis-shop and give me extra spicy. No. Regular. Did Jimmy Dean get his packaging mixed up?? I think I’ll not chance it again. Thankfully, if the sensitivity to spiciness continues, I love boiled potatoes with butter. Good old Iowa carbs -- they're grown in bulk in IDAHO but we eat a lot of them in IOWA.)

I’ve discovered a couple friends are up for breakfast some time, occasionally replacing coffee at Starbucks. They are researching breakfast haunts in town. I can’t wait for our first outing. However, I must say, on Day 6, the Starbuck’s Café Mocha was most tolerable.

With these changes, I have a new appreciation for stability. One of my newly respected at-home tasks: laundry. No matter what my body is going through or how it is changing, the mountain of laundry (the castle, as Liam calls it) is the same. The division of the laundry is the same. I murmur in a therapeutic rhythm that matches the toss of each piece, “Dark, dark, towel, jeans, white, Bill’s shirt, jeans, towel, dark, white, towel, towel, Bill’s shirt, towel, towel, towel…” That’s it. No unpredictability there. I know exactly what will be in that mountain before I start sorting.

Yes, a preponderance of towels. With my little germophobe hat on, towels are one-use only then dunked for a spin in hot soapy water. Consequently, when the laundry gets a little backed up, I occasionally have to dry off after a shower with one hand towel and two washcloths. We used to run out of underwear first, now we run out of bathroom linens.

:)

Staying strong and dry – one way or another, Linda

Keeping Track of Stuff

This morning I’m awake at 1 a.m. I’ve given up trying to decipher why and am just trying to accept that “I am.” I’ve checked Skype and I’m the only one on-line at the moment. Today is Day 7. The beginning of the Nadir period and coincidentally the day I must meet my FedEx driver in person. He is delivering a two-dose supply of medication that I need to sign for. The day after every chemo round, I give myself a shot of Neulasta. It’s a medication that gets my bone marrow to kick in and start producing white blood cells. Each dose is a tiny little 6 mg bit of liquid and requires refrigeration. The insurance company calls me to set-up delivery of these tiny vials. “Your co-pay is $25.00. If you choose not to sign and the shipment is damaged or lost, you are responsible for the replacement cost of $6,035.” And where exactly in my Malcolm help-yourself refrigerator, within the walls of exper-ee-ments, should I store my payload until I need it? I cringed when I heard the cost. I can do a $25 co-pay, what do others do who don’t have that convenient co-pay method in place? The cost of this drug reminded me of a skeptical news commentator say, “Curing cancer is near impossible – cancer is a big business.”

Will is keeping check of my hair and bald patches: “It’s like a cactus.” That explains why it’s uncomfortable to sleep! Cactus needles are not comfortable to lie on nor are they flexible under a hat or wig. I need to keep tabs on my wig; I’m trying to leave it in one of two places: in my bedroom in the wardrobe on the wig rack or on the big Dartington vase on the computer hutch. Being a creature of comfort, I frequently kick off shoes or slippers wherever I am whenever I feel like it. I admit that over our short six-day courtship, the wig is the same. Therefore, if the driver of the red van is reading this, I apologize for pulling my hair off while driving away from school yesterday. I thought I had checked all mirrors and windows, but there you were in my rearview mirror me as I cast the wig to the passenger seat.

A March of Dimes phone call sparked conversation between Will and me last night. I didn’t answer the phone when I saw the caller ID. He asked me “who” the March of Dimes was and I explained what the organization did and that there were organizations working to fight many diseases, including cancer. “Now, Mom, where did your cancer come from?” Me: “I don’t know. But do you know who else had breast cancer and survived? Grandma and Aunt Kris.” Will: “I hope you survive.” Me: “I will.” Although “survivor” seems to be reserved for the ranks of those who are on the other side of it, I include myself in that category already. I actually tend not to use the word because it gives credence to the opposite, and I only see myself surviving every day.

Liam’s Leapster went missing for several days. Bill found it yesterday behind the coffee brewer. I had a flashback and remembered I had confiscated it and needed a quick hiding place. That’s how many things in our house lose their way. Why a pack of gum is tucked behind the utensil urn. Why a chocolate pudding is behind the vase on the counter. Why batteries are on top of the china hutch. Why my wig is atop a vase on the computer hutch.

:)

Staying strong, Linda

Washing Away My Hair: 6 days after 2nd round of chemo

Day Six is undoubtedly the bounce back day. Monday my brain was more ambitious than my body. My body reminded me of that after a few errands. Tuesday I was achy again and not quite up to speed. I’ve been up at 3 a.m. the last two nights. As I recall, at least one of the anti-nausea meds is a steroid. I think it’s wiring me at strange hours. Poor Bill is like a cat in a room full of rocking chairs; the minute I get up he jumps up to make sure I’m OK. “Just wide awake!” I chirp as I bounce down the stairs and wonder what I can accomplish quietly at 3 a.m. Random thoughts this a.m. …

My chameleon-esque head may make it difficult to pick me out in a crowd: crew cut, wig or hat. I go to sleep every night reciting a line from Twas the Night Before Christmas: “Mama in her ‘kerchief and I in my cap had just settled down for a long winter’s nap.” I wear a hat to bed to keep my head warm. And to keep my bristly hair from getting stuck in the pillow. I must notice the cold because of the very sudden loss of warmth – do bald men not get cold heads? Is there a sub-culture I don’t know about? Millions of guys wearing hats to bed and reciting the same line as me at bedtime???

The boys and I are comfortable with my crew cut around the house. My hair is slowly washing away. I’m happy with my decision to get it buzzed. Gently washing away short little hairs seems more mentally manageable than losing handfuls of locks. Occasionally I stop in front of a mirror and ask out loud, “Am I really having to do this?” The bald reflection is confirmation. Thankfully, and I’m going to take liberty in saying, I have a nicely shaped head… undeniable proof that I have great parents who didn’t drop me on me on my head when I was a baby. :)

Port update: I’m becoming one with my port. The tenderness around my port is gone. I’m sleeping without paying much attention to it. After a brief conversation with my oncologist, I am convinced that the whole titanium little contraption is stable. One of his patients who had a port asked if she could play hockey; he checked with the manufacturer – no problem, preferably no direct hits. She played two seasons with it and her team won the league in the second season. Perhaps this little bionic gave her super powers a boost that season.

As the nurse accessed my port on Friday, we ended up doing a little game of Simon Says. Saline would go in just fine but blood was slow to return. First, she had me take a deep breath and hold it. Then I raised my right arm over my head. Then I stood up and took a deep breath. Then I turned my head to one side. Then I took another deep breath and let it out, “OK! Don’t move a muscle!” It was working. I told her I drew the line at standing on my head and would definitely be looking for cameras if she made that request. I was assured this was completely normal as often times a little check-valve, as Bill called it, forms somewhere in the line. Yes, we talk engineering during chemo. So while Bill and my nurse discussed the intricate properties of check-valves, I envisioned a simple dog flap that needed to be knocked off its hinges.

Staying strong,

Linda

Chemo Camouflage

I was officially diagnosed with breast cancer in early July; however, on June 16th, the radiologist’s blank eyes and words, “I think you need to have a biopsy” confirmed it then and there for me. I didn’t know what was down the road, but I made immediate changes knowing chemo was a real possibility because I really did have cancer.

While chemo creates a definite unnatural look for patients, I focused on pieces of my face that I could maintain unchanged as me: most importantly as Mom to Will and Liam, and as Linda to Bill.

I stopped wearing eye makeup. My chemo meds make eyelashes and eyebrows, as well as all other hair, fall out. I went all natural with my eyes early. I bought glasses that framed my eyes. As usual only one of the most expensive designer frames would work for my exper-ee-ment. But I love them.

Since my hair has gradually gotten shorter and shorter (today I write this with a GI Jane cut – which is actually pretty cool…), I have visible ears again. I have re-visited my old earrings, the danglier the better. And I’ve pumped up the inventory with a few Lia Sophia items. (Thanks Debbie for the rush Lia Sophia order!!)

My smile. I try to keep it a little colorful, not bright, bright stuff (yet!) but just some nice earthy gloss. (Thanks Tammy for my Mary Kay delivery!)

So that’s my chemo camouflage, trying to establish a part of my face that will hold up through chemo. When the rest of me looks ill, as it undoubtedly will, perhaps my chemo camouflage triangle will maintain and preserve my eyes, my ears, and my smile. I’m sure my boys will let me know how it’s working!

:)

Linda

Hair Liberation

In my “tug test” this morning, several hairs came out of my head. I'm not surprised, my friend who started chemo a month before me said to expect it day 14, and this is day 15 since the first round of chemo.

So that means the hair appointment I made today is timely – I’m getting it buzzed off at 3 p.m. I’m taking a few hair piece options with me, but I am of the mind that I’ll be wearing a bright pink wig out of the salon. It completes my costume: I’m going trick-or-treating as a Breast Cancer Survivor!

We all have realistic costumes this year: Liam is a firefighter; Will is a policeman; and I’ve dubbed Bill as a mechanic, knowing he will be making repairs to the cardboard fire truck and police hummer that he has made for the boys to wear over their outfits. I foresee a lot of duck tape, wire, and maybe scissors dangling from his tool belt.

About my hair…the surgeon months ago said that if I had to have chemo I would lose my hair. My reply: “Give me 50 years, I can live without hair for a few months. …Plus, I’ve always liked hats.” This is a little like a science project.

With my current short haircut, I have to trim the back of my neck frequently. One day last week Bill, my barber, left early so I knew it would be a scarf day. Getting Liam out of the tub, he hugged me, felt the back of my neck, and three inches from my nose asked, “Mommy, do you have a little beard like Daddy’s on your neck?” Caught by surprise, I laughed and said, “As a matter of fact I do!!” Then he pulled the sweetest voice, “It’s sooooo cute!” My reply, “Why thank you Liam!”

By the way, I do have a Linda Malcolm wig for wig days when I don’t want to feel like Cyndi Lauper. I’m not sure how often I’ll wear it. It looks very realistic, great style and color, but I’ve never been one for “head squeeze,” and it’s pretty firm. Two visions I have: first, Will or Liam pulling it off and traumatizing some little kid, and second, me forgetting I have it on while cooking or baking and singeing the bangs, instantly, with the steam from a boiling pot or opening the oven door. Glasses clear, singed wig...no recovery.

Of course I have other options. Hats: pink ones for chemo days; browns, blacks and greens for out and about. All hats accompanied by matching scarves to keep my neck warm and look a bit more stylish.

I also have head gear specifically made for cancer patients: a bandana, a scarf – and I’m looking into a turban that’s supposed to be very stylish.

Then there is the look with which I came into the world, that millions of grandpas – and more and more younger men -- live with shamelessly. Bald.

I imagine my head covering will all depend on the day, my mood, and the outdoor temperature.

Staying strong,

Linda

25% of chemo treatments are now done!

We are back home after a longer than expected visit to MGH -- 6 1/2 hours total appt time today. No major gliche, paperwork took a while to get from the oncologist's office to the infusion suite and without it, the meds remain under lock and key at the pharmacy. Then when the paperwork arrived, there was a typo. We ate lunch and I had a nap while it was all sorted out.

Again, I feel great! I feel so blessed to walk out of MGH, take a deep breath, and go get the boys. I'm a little anxious as I was for the first days after chemo last time. I wake up daily thinking, "How do I feel? Is anything different?" The anxiety of that train of thought is a little tiring, and hopefully will be less so after each treatment.

We are trick or treating tomorrow... I'll reveal my costume tomorrow... gotta get it all together yet!

Happy Halloween!

Please keep us in your thoughts and prayers!

:) Staying strong, Linda

Second new stage: Exper-ee-menting

This comes with a new voice as my “spicy” Liam gains a boatload of confidence. It’s in his actions and most definitely his voice. The boys and I often conduct supervised group experiments after school: watching white carnations turn the color of the food coloring water they are in; making carbonated water out of regular water; practicing “sink or float” on a big towel on the kitchen floor; mixing cement for stepping stones.

And now Liam is conducting his own “exper-ee-ments” which are private affairs that I happen on to. Some of the most memorable ones from the last week…

6:00 a.m. I’m in the living room, trying to finish one cup of coffee before the whole house wakes up. Liam is up and we’ve been through Stage One, as described in the previous post. The night before Liam had discovered a piece of gum, and as he chewed it like a cow, he calmly said, “I’m just trying it out, Mom.” Despite my coaching, as we stared at one another, he swallowed it. Back to 6:00 a.m. I hear paper in the kitchen. I’m not too concerned because that’s where we keep crayons, markers and paper. Then I think, “That’s….little paper.” Liam, sitting in the little mouse hole he loves to create, has found a pack of gum that I missed. I see one wrapper on the floor and start my gum spiel… then I find five more wrappers as he escapes from the hole. “Sorry, Mom,” he says, giving nonchalant a whole new meaning. I tell him if he does this again, I’ll have to take him to the hospital. Then both of us have visions of a nurse blowing bubbles, Liam getting to watch Nemo twice while coloring… There’s no shock value in the word “hospital.”

Will and Liam have a little coffee pot that “really” brews. Liam loves it. Again towel on the kitchen floor, soaking up the overflow, and as usual, Liam is drinking the water from the coffee pot after he brews. He seems happy, contented. I turn on some music and go into the dining room to fold clothes on the table. When I come back, Liam has vacated the brewing area, so I pick up the brewer and empty it. As I pour out the holding tank, the water is thick and brackish – disgusting! I panic, thinking I must not have emptied it the last time and it’s been setting for ages with water and now Liam has just ingested water that will result in Typhoid!! After all, if Scarlet fever is not out of the realm of possibility, then Typhoid is just as plausible. I decide to sniff it, somehow thinking an odor would confirm the chances of Typhoid. Oddly enough it smells like orange juice. I put on my Charlie Brown teacher voice and Liam comes back with, “Sorry, Mom. I was just exper-ee-menting.”

Toileting. Liam is completely toilet trained; some days it takes a lot of self-talk for me to accept this is truly a good thing. As a reminder, the following events have occurred in the last seven days:

Liam finds an old pull-up in a closet – old but clean. He strips all clothing and puts the pull-up on to pee. “I’m just exper-ee-menting, Mom!”

On a Nadir day, I peek into the bathroom to check on Liam who takes quite a while to poop on the potty. And there he is: pants around his ankles, toilet brush in hand, stirring. I’m beside myself. “Moooom, I’m making warm chocolate for you.” -- This is the second batch I’ve had in the last two weeks.

The frequency with which we wash our hands has sent Liam over the edge. His mechanism to deal with it, after going to the bathroom: an expereement to see how high he can get the bubbles in the bathroom sink. No overflow yet, but he has achieved the 6-inch mark.

From toileting events alone, my hair may be completely gray before it falls out.

Then there’s my philosopher Will, who has soaked up everything we’ve said in his presence over the course of his short six-year life, “Mom, he’s just experimenting. Isn’t that what life is all about?” My comeback was, “Life experiences are important too not JUST experimenting.” I have no idea what that means. (I don’t do well thinking on my feet… I like to have time to process. I hope Will and Liam don’t pick up on this until they are away at college; otherwise, I’ll be a sitting duck in heated teenage conversations.)

Hmmm… I just had a brain flash. Mythbusters. The boys, all three of them, love that show. I saw nearly a whole program for the first time last night, and there’s a lot of “how-can-we-make-it-bigger” attitude in there! Seeing it also clarifies Will and Liam’s frequent, and oh-so gleeful, “Busted!” – usually shouted after rolling a big Lego ball down the stairs and watching it shatter at the bottom.

OH MY GOSH! These expereements have NOTHING to do with my controlled science experiments. This is ALL about bigger and better, firing hard cheese out of cannons to see if they will pierce a sail. Bill, we need to talk before Liam sees that episode…. You are soooo busted!

(Did you see the First New Stage?  It's a doozi!)

First New Stage:Flipping Out Mom & Dad with the 3- to 4-year-old Schizophrenia Act

Will went through this stage as well. That’s how I diagnosed it in Liam. This is how it works. Liam calmly asks for something; I give him exactly what he wants; then he drops into an immediate tantrum saying that’s NOT what he wants. All of the reconciliation attempts I make are futile, only adding to the frustration of this strange little being. For about a week, Bill and I have both tried the calming words, trying to talk Liam through this as he sobs, screams and kicks. Will sobbed and screamed, no kicking. This is tricky for me as I don’t want or need to be kicked, not that anyone does, but I’m like the football player with the bad knee: I have spots that are slightly weak that I try to protect.

Every morning this week between 5:30 and 6:30, we’ve had an episode. It happens throughout the day as well, but not at school. After all, as the character Wilson on "Home Improvement" once said, “Parents are the bone upon which children sharpen their teeth.” I’d much rather take this than hear at the end of a school day that a teacher had to bear the brunt of it.

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Yesterday morning, it all started as I handed him his warm chocolate milk that he had asked for but, now that I’m handing it to him, does NOT want it. I finally remember what we did with Will. Pulling “calm karma” from the voices of teachers, I say, “I want to talk to you, but I can’t until you stop this.” Then I leave the room. Bill stumbles upon the episode, and in an exasperated voice says, “I’ll go talk to him.” (Bill’s voice reminds me of the exasperated fish from Nemo that always has to deflate the puffer fish when he pops into a ball.) I say, “I wouldn’t go in there if I were you.” So we listen to the music for 10 minutes. Then into the kitchen Liam comes, gasping for breath after expending so much energy on this tantrum. He sputters in a small breathless voice, “I… need…some…warm….chocolate.” Ah, the power monger alien has left my son’s body. My Liam has returned.

(And then, there is the Second New Stage: Exper-ee-menting.)

Being bionic – the installation and use of a purple titanium port

I thought underwire bras were tricky going through airport security. Now I carry an ID card with a serial number to prove that I have a port. Like I’m travelling armed, a license to carry a piece on the plane. Yeah, OK it’s only the size of a quarter, but it’s a long way from Cheerios and a sippy cup.

It’s a docking station for Kibo, but so much more. As I protect it nightly in bed, I must say on days when it jumps into action, I’m most appreciative of its presence. My chemo day starts with a blood draw in the infusion suite. A half hour before I get there, I rub Embla on – a numbing cream. I probably don’t really need it; I think psychologically it makes the idea of accessing the port a little warmer.

By the way, my port was installed on my right side, a couple inches under my collar bone. It’s right under the skin and is raised, so it’s not flush with my skin. A little tube goes out the top of the port, over my collar bone, just under my skin, and into a vein, a more significant vein than the ones accessed in the arm. The tube goes pretty far into the vein. It’s something I need to learn a bit more about. I’m not completely convinced that it won’t slip, say when I move a kitchen table to the toy room. However, I was told that I could resume all normal activity, but Will was not there, so that particular doctor does not know that I have farm muscles. (I was once accused of having super powers by a little girl who watched me carry Liam in his stroller up the stairs by City Hall in Boston. I looked at her and said, “Of course I do… all mommies do.” I winked at the mother as I continued the climb; I’m fairly certain she didn’t appreciate my comment...so I now generally keep that information under my hat.)

The port is tested each time to make sure it’s functioning properly. So once “accessed,” that’s the only little prick. A little saline is flushed through then the nurse pulls back a little bit to check the blood return. While the idea of a port sounds bizarre and a little disconcerting, I went through one week In September that makes me appreciative. I had an IV or blood draw three days in a row from the same spot in the same vein. In my right arm I have a “chubby vein that is irresistible.” That’s a direct quote from a phlebotomist. I needed that week to appreciate this port.

Anyway, first blood is drawn. That is processed immediately to check all functions, in particular to make sure my white blood cell count rebounds so I can safely have another infusion. While the lab processes that, I go upstairs to see my oncologist for a quick physical check. We talk about side effects and how to handle them. Thank God that will hopefully be a short conversation. The port is my major side effect. While sleeping at night, sometimes my awareness of it keeps me awake. Should I sleep more upright? Should it still feel tender?

The magic of it. If you are a scrap booker, this is an easy concept to grasp. The cutting boards scrappers use are made out of self-healing rubber. The board absorbs the cut but then immediately closes up. The very same concept is how entry to a port works. Completely covered by my skin, there is a piece of rubber, about the size of the tip of my little finger that sits on top of the purple titanium base. So that means two things: the needle is held firmly in place with a tight rubbery hug and when it’s done for the day, out the needle comes and the rubber seals immediately. So, out the window with the idea of a gaping port hole, an open invitation to infection. No. This is how it is. That rubber is a scientific wonder that ranks right up there with the magic of Velcro. Which leaves me with the question: as with Velcro, did NASA have a hand in the development of self-healing rubber?

Back to the chemo day… after visiting with the oncologist, I return to the infusion suite for round two. I’ve requested a recliner overlooking the Charles River. The first day we were in a private room with an ordinary, uncomfortable hospital cot. If I’m trekking to MGH’s glass-walled Yawkey building, I want a view. Anyway, my oncology nurse, Beth, gives me three anti-nausea pills then my first infusion begins. It’s just an hour of a hydrating IV. After that, Beth sits next to me and gives me the first med, Adriamycin, via an IV push. It’s pretty concentrated and powerful. She gives me 2ml every couple minutes and it is “watered down” with hydrating fluid. So that med, which happens to be bright red takes about ½ hour. Then I get more hydration before Beth hooks up the second med, Cytoxan, suspended from a traditional IV pole. It’s a drip that takes about an hour. Last time, I took a little nap during this time. Then a little more hydration and we call it a day. Out comes the needle and we go home.

If any of you watch “Brothers and Sisters” you know that Kitty has just started chemo. Two major differences between Kitty and me, well three if you count our weights… I should preface my commentary: I know everyone reacts differently to chemo. I know “chemo” isn’t one medicine; there are many medications under that umbrella and each has its own private list of side effects. I know drama makes good TV. I watched this episode after my first chemo treatment. The following comments are based solely on my own experience.

So... given all of the above... Reacting to the feeling of the chemo entering her body, Kitty gasped and said, “There it is.” There was no moment like that for me. (Hmmm, this could be due to our weight difference now that I think about it...) I actually asked Beth if I would feel anything. She shrugged and shook her head, “No.” And I didn’t. I was eating lunch as Beth went to work on the Adriamycin IV push. I walked into the infusion room with the vision of walking out of the infusion room. Going in and coming out as me. I trusted Beth to do her job then to let me get on with mine. Mentally, I’ve accepted that I have to hand over control on occasion, but I feel more empowered focusing on the moment the control returns to me.

Second, Kitty was treated in LA, deciding against travelling to Boston for treatment. I attribute her nausea to that decision. The two oncologists I “interviewed for the job” (especially my current oncologist who specializes in breast cancer research and treatment) are strongly opposed to their patients feeling nauseated and they are outright against vomiting. Everyone reacts differently; however, the meds to control nausea are amazing. I have a very definite plan to head-off nausea, which includes six different medications if necessary. Thankfully, the first time around the plan worked with four or five. I expect it to work again in the next seven rounds. I’m counting my blessings as one oncologist told me I’m in the group most likely to be ill: I’m young, I don’t drink excessively, and I don’t smoke.

There is one more difference: Kitty didn’t have friends making chicken noodle soup for her. The magic may all be in the chicken noodle soup. I decided that for two days before and two or three days after chemo, my diet is chicken noodle soup. Thank you, excellent soup-ateers, for providing this medicine. :)

Day 8: Hermit in House

We no longer have a kitchen table. I’ve moved it to the toy room and set up the game table on it for the boys – the game table is a gift from last Christmas that has never really had a home, other than lodged against a wall. There’s this thing called “dining room table” that I’m going to try to implement in daily living.

Bill and I are having our anniversary dinner tonight while the boys have a little Halloween party with Liam’s teacher. :) Since I’ve moved the kitchen table, now I need to find the dining room table as well as a couple candles. The dining room table is currently serving as a flat storage unit… (Don’t worry Bill, there are still bar stools at the kitchen island…if it’s still a storage unit when you get home… :)

Funny, nearly everything on the dining room table is just sitting there waiting to leave the house: old toys, old flowers, old party favors. But, there is one gem on the table: Will came home Tuesday with a plan. He needed supplies – instantly of course – two pieces of paper, green markers, tape and his musical card that sings “I Like to Move It, Move It.” A half hour later the musical card had morphed into a card for me. The musical version was neatly tucked and taped inside the handmade card that included pictures of all of us. “Mom, how to you spell ‘Nice job at chemo’”?? :)

Six days after 1st chemo

After much debate over whether or not to go to Maine, I am so glad we went. We had a great but short trip filled with lots of laughs, some hiking and leaf peeping, and a dinner at a little micro-brewery Saturday night.

I'm so happy, and a little reluctant to say, I feel great! I'm not sure what to expect every day, but I'll take this. I have made it through the first six days with no nausea. The six or seven meds did the trick. Yesterday I was a little achy but I think that was from a med to boost my bone marrow and get the white blood cells pumping again.

I have been taking the boys to school, going to school board meetings, and having coffee with friends... all while waiting for a significant change. I will take status quo.

Tomorrow begins the Nadir period: when my white blood cell count will be at its lowest for 7 to 10 or 12 days. So, I'm going to pull back, taking the boys to school and then returning home to lie low. Apparently, this is a deceptive time as I should feel pretty good but my immune system will be weak. By the time the 30th rolls around, my white blood cell count should be up and ready for round two.

Thanks to all of you, once again, for your notes, calls, thoughts and prayers.

:) Staying strong, Linda

Day One Done!

only seven more to go...

I had described this journey toward chemo as a 777 in a holding pattern, after having flown from Chicago to Hong Kong. Well it finally landed and is still pretty powerful!

I went in to MGH to start chemo with a bit of a sinus heachache and came out with a bit of a sinus headache... After a three hour infusion, I feel like me! I have six different nausea meds to take, some I definitely take every morning for a couple days, others are back-ups.

So, tomorrow (Saturday) morning we are heading up to Sunday River to meet another family. Just a quick overnight -- looking forward to seeing the leaves -- they should be beautiful in the mountains.

Thank you all for your continued thoughts, prayers, cards, vibes, calls, coffees, emails, food... your help. You have created the most incredible extended family for us through your kindness. I hope to stumble upon or even create new words for these two, but for now, it's all I have. Thank you...

And now, my Scarlet fever boy Liam is healthy; however Bill has a cold. So I've chosen the healthiest person and the one who kicks the least in his sleep to snuggle up with tonight: Liam, already fast asleep next to me. (This is a record: we now have all four Malcolms on antibiotics in our house...)

Good night and I hope all of you are healthy and enjoy this fall weekend!

Staying strong, :) Linda

A week on antibiotics

Liam spiked a fever late Sunday afternoon. After he spent most of the day yesterday on the couch, I took him to the doctor yesterday afternoon. He has Scarlet fever, which is a form of strep but with a very itchy rash. He's on antibiotics, so are Will and I. Our pediatrician thought Will would break out this week; the head-start on antibiotics should prevent (hopefully) most of the symptoms for him. And I'll be taking antibiotics as a precautionary measure with chemo starting on Friday.

Commemorating Will’s 6th Birthday & Liam’s 3rd Forever Family Day

So, while little can top the four-hour ordeal of Liam’s rock-up-his-nose episode, here are a few more one-liners that come to mind to commemorate Will’s 6th birthday and Liam’s Forever Family Day (we brought Liam home from Korea three years ago). Around birthdays and forever family days, I try to jot down a few key quotes or moments that kind of sum up the people they are at that moment in time. Those things that they say or do that we think ‘we’ll never forget that!’ and then poof, something else takes the place of the last best tidbit.

Here are the highlights…

After hearing a crash from the dining room, I hear Liam say, “Awww mannnn, I shouldn’t have done that! Mom, we need some tape!” While he was raising the sails on his pirate ship, the mast broke. Translation: While he was playing with the blinds, the valance fell off the wall.

The question from Will’s teacher that always makes me gasp: “Do you want to know what Will told me today?” And this time he said: “Guess what, my mom has… farm muscles.” Letting out a big breath, I replied, “Ahh, yes I do!”

If Will starts to cry, it takes a lot to get through that emotion; deep breathing works best. When mad at me and in tears one day, Will refused to do deep breathing with me, “I’ll do it with Liam but not with you!” Liam’s little head spun toward Will. They locked eyes and Liam took the lead, calming Will down with one deep breath after another.

Less than a week after my first surgery (and after the above deep breathing exercise), Liam was doing somersaults on our bed and his foot landed about two inches from my incision. I started taking HUGE deep breaths, sucking nearly all the air from the room. Liam looked at me and asked, “Does deep breathing help, Mom? Next time stay out of my way.” I’ve since adopted many protective stances.

Liam is finding his els! Weam is Liam. Towo is towel.

Beautiful noises: the men in my life laughing… Bill’s boisterous laugh; Will’s giggles and Liam’s chortles. It’s an elated symphony when happening simultaneously.

The great fake out: Liam charging full-steam toward me with that grin – while I’m raising my arms in defense – stopping short, he looks up at me and says, “Which side hurts, Mom?” Then he gently kisses my arm on that side and jumps up on my lap on the opposite side. Knowing the strength behind that all-out run, I wouldn’t want to be the opponent facing Liam on the football field in 12 years.

Last Friday picking Liam up from school: “Hey Mom, is your arm OK now?” Me: “Yes, it feels pretty good now.” Liam: “Sooo… It’s OK now?” Me: “Yes, it feels good.” Liam: “Can I roll down the hill now?” Me, not following the string of conversation but going with it: “Sure you can…”

After Bill has persistently explained for days, perhaps weeks, that there is not a snow monster in our house, we finally realized that when Liam hears “There’s no monster!” he is processing it as “There, snow monster!”

Will has written a book about our family. There’s a different sized stick person on every page: each of us at different ages in our lives.

At school, Will drew a picture of his family and labeled each of us with our ages. I’m 33! And even when his teacher asked him if he was sure about that, he stuck with it! That’s my boy!!

Will: “Chemo and Kibo sound a lot alike.” Kibo is the Japanese lab on the space station.

The fascination with tape continues: Coming home from the 2nd surgery, I have new, big bandages on. Liam’s excited, “You have new tracks, Mom?” The wrinkles in the tape are train tracks.

Liam steaming toward me with Scotch tape. “I have more for you, Mom!” He also has a flat tan “Lego band-aid” in his other hand.

Will: “Mom, we’re going spelunking!” Translation: We need flashlights. We’re going to the basement in the dark.

Liam, at the breakfast table yelling at my laptop that's open on the counter, “GRANDMA, ARE YOU THERE?” Webcam and Skype: a beautiful combination.