(Original post date: 11/09/09)
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
Thursday, September 30, 2010
Tuesday, September 28, 2010
Keeping Track of Stuff
(Original post date: 11/5/09)
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
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
Thursday, September 16, 2010
Washing Away My Hair: 6 days after 2nd round of chemo
(Original post date: 11/04/09)
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
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
(Original post date: 11/01/09)
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
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
(Original post date: 10/31/09)
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
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!
(Original post date: 10/30/09)
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
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
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