(Original post date: January 12, 2010)
On my use of the big one: when I’m in fear for my life, feeling powerless. I vividly recall using it three times looking back at our history together. Bill pulled me into many adventures that I doubt I ever would have done on my own – and would relive again with him in a heartbeat.
After a few runs down the tame ski hills in Wisconsin, we went to Utah for a week. The green runs at Snowbird were nothing more than the narrow roads winding around the edge of the mountain. Bill caught up with me and convinced me to take another run away from the road and down the side of the mountain. He stayed at the top while I gingerly traversed the mountain. Ski across, fall down, turn, ski, fall, turn, ski, fall, turn. After six or eight reps of this I stopped after ski, fall and was only a quarter of the way down the mountain. I just sat there with tears burning my cheeks. Bill, my alpine skiing hero, came swooshing up next to me. Seeing my tears, he said, “Oh, let me give you a hug!” My reply, “A hug won’t get me off this f@#$ mountain!” I have no idea what got me down the mountain; perhaps unleashing steam got the adrenaline going. I got off the mountain, sporting an eight inch bruise on the back of my left thigh where I fell on every left-handed turn.
On another adventure we were sailing with friends in St. Martin, bare boating, which means taking the boat out on our own with no paid crew. We had picked a week with a lot of wind. It was torturous, blowing all the time everywhere on the boat. Even as the sunset, when winds usually fade, it blew. If we tried to escape it down below, we would sweat because it was so hot. It made for some great sailing but happy hour was more like windy hour. We had sailed quite a way from the boat’s home base and had gotten caught in rainy weather. The Captain and First Mate, the men on our boat, decided to set sail anyway despite the rain. Soon it was more than rain. We were in 20-25 foot swells and beating rain. I sat looking out over the bow, watching land disappear as we slumbered over the crest of a wave and into the trough. I couldn’t do that, so I looked over the stern, only to see land behind us disappear. I looked all around us. No other boats were sailing these high seas. I turned to the Captain and the First Mate and asked, yelling over the gale, “Why are we the only f@#$ boat out here?” They were redeemed as a big dive boat motored by at full-power – with a lot more power than our little engine. Lying out flat on a dock never felt so good as at the end of that sail.
We rented a pretty large sail boat on that trip so we had two sleeping berths and a third just for scuba gear. Despite the constant five to eight foot swells, we still had some great dives in St. Martin. We would drop anchor near a dive site then giant stride off the back of the boat and settle down between 30 and 80 feet deep where there was no chop but sometimes a pretty strong surge. During one dive we checked air levels and decided we needed to head back to the boat. At 30 feet deep we swam and swam, longer than what we did on the way out. I was getting big-eyed – swimming at 30 feet was a lot easier than surface swimming in choppy water, and I didn’t have an abundance of air. I developed my own underwater sign: cupping my hands together and moving them emphatically as if to say, “Where’s the f@#$ boat?” Bill understood. At that point our captain went to the surface and found it. Behind us. It had swung around in the rough seas and we had swum right past it.
So, June 16th I found myself on yet another boat bracing high seas. Atop a very steep mountain skiing on a narrow road. Diving with little air not knowing where my boat was anchored. From then until early August I woke up every day with the same thoughts, “Mmm… the sun’s up. What day is it? F@#$, I have cancer.” I’ve never sworn so much in my whole life. Once the cancer was thoroughly defined and didn’t appear anywhere else on the PET scan the word dropped from my wake-up routine. Slightly smoother sailing, a mountain with gentler slopes, back safely on a stable sail boat. No longer in fear for my life and gaining knowledge, hence power. I was going to live.
I saw my oncologist yesterday before chemo. I’m not sure what the discussion was but he referred to the time when I “had” cancer. And I think back to the radiation doctor in September who said to count the cancer cells in my body would be like "counting the angels dancing on a pinhead." All I’m doing now and in the near future are preventative measures. I’m officially putting cancer in the past tense.
Staying strong,
Linda
Thursday, June 30, 2011
Spring
(Original post date: January 11, 2010)
We had a 60-degree day mid-December. The unexpected warmth was a reminder of how beautiful the spring sun will feel this year. Or was it a reminder of how far away spring is? Whichever, outside playing with the boys, I felt silly on this warm sunny day brushing away tears under my sunglasses.
I relate to Frog and Toad’s adventures much the way some people follow Peanuts, Dilbert, or Winnie the Pooh. There’s a speech by Frog to his best friend Toad from the story “Spring” that gives me hope but draws tears, no matter how many times I read it…
“What you see is the clear warm light of April. And it means we can begin a whole new year together, Toad. Think of it. We will skip through the meadows and run through the woods and swim in the river. In the evenings we will sit right here on this front porch and count the stars.”
As fortunate as I feel, there are occasional days when I just want to recover stolen moments. Playing at the beach. Visiting family. Taking the boys to birthday parties and staying to chat with other parents. Accepting kisses on the lips. Scooping my sons up effortlessly from the ground into a hug. When visiting recently, my sister scooped up Will and Liam into big, beautiful hugs while picking them up from school. I felt the same wincing pain as I did on that warm late fall day.
I try to flip it, to spin it, knowing full well the number of blessings that have come on this journey and knowing there are future opportunities for all of these moments. But I would be remiss not to acknowledge and to grieve those nuances lost.
Years ago, in a smaller life quandary, I found that the best way to start solving a problem is to take immediate action, no matter how small that action is. Just by asking myself, “What’s the one thing I can do tomorrow to start fixing this?” – that puts the ball in action. One small step opens the mind to possibilities.
So, after this 60-degree day and needing to look past winter, I called the local radiation doctor to get a glimpse of the next phase. I have two chemo treatments left: today and on January 22nd. Then I get a month break. February is treatment free. March 1st I start daily radiation (five days a week) for six weeks. I decided to get my appointments booked right away while the schedule was wide open. I’ll drop the boys off at school at 8:30 a.m. then go for my 9 a.m. appointment. It takes about 10 minutes per appointment, so the rest of the day will be mine. I finish radiation April 9th. April 19th is the beginning of spring break week. I’ve made these plans knowing they may change. I will get a second opinion on radiation treatment as I did with chemo to make sure the local doctor and a MGH doctor agree on protocol for radiation.
Shortly after I set the radiation appointments, I dreamed that I had hair again. I could feel it on my ears in the dream.
Staying strong,
Linda
P.S. Aunt Kim, my Gurney’s catalog came on Friday. I decided rather than dream about spring planting I would take action. I’m starting with a small sun garden space outside our fence by the drive. I've been watching this tiny chunk of ground and even in the winter it gets a good dose of sun. I placed my order on Saturday, taking advantage of the “buy-$50-get $25 off.” I’m going to check around and find the phone number of someone who owns a horse. :)
We had a 60-degree day mid-December. The unexpected warmth was a reminder of how beautiful the spring sun will feel this year. Or was it a reminder of how far away spring is? Whichever, outside playing with the boys, I felt silly on this warm sunny day brushing away tears under my sunglasses.
I relate to Frog and Toad’s adventures much the way some people follow Peanuts, Dilbert, or Winnie the Pooh. There’s a speech by Frog to his best friend Toad from the story “Spring” that gives me hope but draws tears, no matter how many times I read it…
“What you see is the clear warm light of April. And it means we can begin a whole new year together, Toad. Think of it. We will skip through the meadows and run through the woods and swim in the river. In the evenings we will sit right here on this front porch and count the stars.”
As fortunate as I feel, there are occasional days when I just want to recover stolen moments. Playing at the beach. Visiting family. Taking the boys to birthday parties and staying to chat with other parents. Accepting kisses on the lips. Scooping my sons up effortlessly from the ground into a hug. When visiting recently, my sister scooped up Will and Liam into big, beautiful hugs while picking them up from school. I felt the same wincing pain as I did on that warm late fall day.
I try to flip it, to spin it, knowing full well the number of blessings that have come on this journey and knowing there are future opportunities for all of these moments. But I would be remiss not to acknowledge and to grieve those nuances lost.
Years ago, in a smaller life quandary, I found that the best way to start solving a problem is to take immediate action, no matter how small that action is. Just by asking myself, “What’s the one thing I can do tomorrow to start fixing this?” – that puts the ball in action. One small step opens the mind to possibilities.
So, after this 60-degree day and needing to look past winter, I called the local radiation doctor to get a glimpse of the next phase. I have two chemo treatments left: today and on January 22nd. Then I get a month break. February is treatment free. March 1st I start daily radiation (five days a week) for six weeks. I decided to get my appointments booked right away while the schedule was wide open. I’ll drop the boys off at school at 8:30 a.m. then go for my 9 a.m. appointment. It takes about 10 minutes per appointment, so the rest of the day will be mine. I finish radiation April 9th. April 19th is the beginning of spring break week. I’ve made these plans knowing they may change. I will get a second opinion on radiation treatment as I did with chemo to make sure the local doctor and a MGH doctor agree on protocol for radiation.
Shortly after I set the radiation appointments, I dreamed that I had hair again. I could feel it on my ears in the dream.
Staying strong,
Linda
P.S. Aunt Kim, my Gurney’s catalog came on Friday. I decided rather than dream about spring planting I would take action. I’m starting with a small sun garden space outside our fence by the drive. I've been watching this tiny chunk of ground and even in the winter it gets a good dose of sun. I placed my order on Saturday, taking advantage of the “buy-$50-get $25 off.” I’m going to check around and find the phone number of someone who owns a horse. :)
Thursday, April 28, 2011
The Warrior Princess
(Original post date: January 9, 2010)
At 6:00 a.m. on September 24th, I took the train to Boston for a procedure at MGH: to have my port implanted. Bill was going to meet me after lunch for a chemo teach. As I was ushered into the exam room at 7:00 a.m., the nurse asked who was with me. “My husband is meeting me this afternoon. When I’m done here, I’m going to find a nice quiet spot for lunch.” I didn’t expect her reply, “Well, we’ll find a quiet spot for you here until your husband arrives. You can’t leave the office on your own.” Getting the feeling that this was more than a minor procedure, I sat in an interior waiting room, under a “No cell phones allowed” sign and called Bill. “Can you come sooner? They aren’t going to let me out of here until you get here!”
To start the procedure, the tech got her tape out. As she started working she explained why she was doing what she was doing: she was taping my right breast to my right knee. Had Will and Liam called ahead suggesting a tape trick be pulled on me? “We’re simulating you standing up. We don’t want to place the port with your breast up here. Believe it or not, this works well.” Whatever you say, I thought. Then she went to work covering my chest and neck with the equivalent of iodine. I couldn’t see it, but she told me that it was orange. I could feel it run from the base of my throat right up to my ear. She told me I could get it off with rubbing alcohol.
The radiologist came in and went to work. While I was supposed to be in a happy place with the mild sedative, I could feel the strength of the radiologist putting the port in place. I would’ve preferred to have been in a much happier place, remembering none of the procedure.
After recovering from the port placement, having a bite to eat, and finagling a cup of coffee from the nurse, I met Bill outside about an hour before our next appointment. I checked my cell phone. Change of plans. Chemo teach canceled. After my second surgery, I had an MRI to confirm the whole tumor had been removed. I had expected an “all-clear” call. Instead it was a “We see something else and aren’t sure what it is. Come to the Medford hospital to have an ultrasound done.” I wasn’t happy. I had a plan. I didn’t want it changed.
I walked into the Medford hospital and bumped into a couple from church, said “hello,” then continued on to the bathroom. There I saw the orange stain on my neck. I had worn a coral-orange shirt that day. My shirt and neck matched. I was pissed. I had had to sit for an hour and a half after the procedure and no one had offered to clean my neck off. My anger festered as did my attitude. Standing in that bathroom and summing up the day’s, weeks’ and months’ events, I remember thinking loudly, “This is bullshit!” The Warrior Princess was born. I think perhaps even my hair reddened with anger. (Sidebar: I warned you about the cussing that runs down through my family. I know the vocabulary and use it only on a few, select occasions. I have to be extremely angry or in fear for my life. I’ve sat on this for days, thinking about editing it out, but this is how it happened. Sorry if I offend.)
I went to the waiting hallway. A tech who I recognized from previous visits came up to me with a blue Johnny (hospital gown). I had been sitting in a blue Johnny from 7:30 a.m. until noon at MGH. I exploded, “Do you mean to tell me I can’t talk to my doctor in my OWN clothes?” Poor thing. “Of course you can,” in a way-too-kind voice for how I had just spoken to her.
Fully dressed and with Bill by my side, I met with my breast surgeon. With sullen, edgy looks she and I exchanged how disappointed we were with the situation. She left to consult with the radiologist before they did the ultrasound. I changed into the Johnny and laid down, staring at the ceiling, again wondering if this was really happening to me. Bill sat quietly in the corner. The tech came back. “What do you have on your neck?” I explained where I had just come from and told her I had to use alcohol to get it off. “Do you want me to wash it off?” Still seeking some control, I tartly replied, “Only if you don’t charge me for it.” “It’s a freebie.” She wiped my neck so tenderly that tears welled up in my eyes.
Then she asked if she could get me anything. “A beer would taste really good right now.” She chuckled, then we bantered a bit.
Tech: “What do you do?”
Me, as the tears started rolling down the side of my face: “I’m a full-time Mom. I have two sons, and I can’t talk about them lying in a hospital bed.”
Tech: “I’m so sorry! Where did you grow up?”
How did she know these were my two touchstones? Me, more tears flowing through the gates: “Iowa, and I can’t talk about that either.”
Tech: “I’m trying to make you feel better and NOT doing a very good job!”
We were both laughing as my eyes soaked the sheet behind my ears.
Me: “I can talk about cancer in the hospital without crying!”
And, being a tech, she said, “I can’t talk to you about that!”
Me: “Weather has been nice, huh?”
The surgeon and radiologist came back in and went to work, conversing in scientific jargon. My surgeon apologized for the foreign language. I told her I was on Wingaersheek Beach and to just to let me know when she was done and what they decided. At one point, I was wiggling trying to wipe a tickly tear in my hairline. The tech saw it and wiped it away for me.
They left the room to consult and to let me get dressed. I’m guessing the tech had tipped them off about my love for the Johnny. My surgeon came back in and told me the ultrasound was inconclusive. She said, “I say we just take it out tomorrow.” What I wanted to hear. No messing with biopsies, just get it out. Be sure. She was as fed up as I was. Patients waited for weeks to get into her OR, she was going to make this happen tomorrow.
Before my 1 p.m. surgery the following day, the radiologist drained fluid that had built up after the previous surgeries. Then he placed a wire to mark the new questionable spot. Neither were pleasant procedures. I told the radiologist it was nice to see him again, but I didn’t want to see him again in the near future. We both smiled as we shook hands.
Surgery went well. After having already had two surgeries there, I knew the staff; it felt like old home week. I left the hospital with bandages sticking out above my collar on the left side, matching those on the right covering my port. I really did look like a Warrior Princess, minus the orange war paint on my neck. I spent the next several days icing my wounds. That battle officially ended a few days later with a call from my surgeon to say the spot was benign, probably scarring from the first two surgeries.
I was back on the chemo highway.
There have been pivotal moments on this journey with such rawness that I block them from my own immediate recollection. There’s no way I could immediately share this experience. First body and spirit needed to go through a healing process. I jot notes during these times but don’t want to relive it through sharing it soon after the event. Now, months later, finally I can look back, reflect, and even laugh. But those tears that day felt like salt pouring in an open wound before the first incision was even made. It took weeks for the emotional pain to dissipate. Even as I wrote this and re-read it and re-read it, my Warrior Princess teeth clenched in defense. I’m going to post it now and release my jaw.
Staying strong,
Linda
At 6:00 a.m. on September 24th, I took the train to Boston for a procedure at MGH: to have my port implanted. Bill was going to meet me after lunch for a chemo teach. As I was ushered into the exam room at 7:00 a.m., the nurse asked who was with me. “My husband is meeting me this afternoon. When I’m done here, I’m going to find a nice quiet spot for lunch.” I didn’t expect her reply, “Well, we’ll find a quiet spot for you here until your husband arrives. You can’t leave the office on your own.” Getting the feeling that this was more than a minor procedure, I sat in an interior waiting room, under a “No cell phones allowed” sign and called Bill. “Can you come sooner? They aren’t going to let me out of here until you get here!”
To start the procedure, the tech got her tape out. As she started working she explained why she was doing what she was doing: she was taping my right breast to my right knee. Had Will and Liam called ahead suggesting a tape trick be pulled on me? “We’re simulating you standing up. We don’t want to place the port with your breast up here. Believe it or not, this works well.” Whatever you say, I thought. Then she went to work covering my chest and neck with the equivalent of iodine. I couldn’t see it, but she told me that it was orange. I could feel it run from the base of my throat right up to my ear. She told me I could get it off with rubbing alcohol.
The radiologist came in and went to work. While I was supposed to be in a happy place with the mild sedative, I could feel the strength of the radiologist putting the port in place. I would’ve preferred to have been in a much happier place, remembering none of the procedure.
After recovering from the port placement, having a bite to eat, and finagling a cup of coffee from the nurse, I met Bill outside about an hour before our next appointment. I checked my cell phone. Change of plans. Chemo teach canceled. After my second surgery, I had an MRI to confirm the whole tumor had been removed. I had expected an “all-clear” call. Instead it was a “We see something else and aren’t sure what it is. Come to the Medford hospital to have an ultrasound done.” I wasn’t happy. I had a plan. I didn’t want it changed.
I walked into the Medford hospital and bumped into a couple from church, said “hello,” then continued on to the bathroom. There I saw the orange stain on my neck. I had worn a coral-orange shirt that day. My shirt and neck matched. I was pissed. I had had to sit for an hour and a half after the procedure and no one had offered to clean my neck off. My anger festered as did my attitude. Standing in that bathroom and summing up the day’s, weeks’ and months’ events, I remember thinking loudly, “This is bullshit!” The Warrior Princess was born. I think perhaps even my hair reddened with anger. (Sidebar: I warned you about the cussing that runs down through my family. I know the vocabulary and use it only on a few, select occasions. I have to be extremely angry or in fear for my life. I’ve sat on this for days, thinking about editing it out, but this is how it happened. Sorry if I offend.)
I went to the waiting hallway. A tech who I recognized from previous visits came up to me with a blue Johnny (hospital gown). I had been sitting in a blue Johnny from 7:30 a.m. until noon at MGH. I exploded, “Do you mean to tell me I can’t talk to my doctor in my OWN clothes?” Poor thing. “Of course you can,” in a way-too-kind voice for how I had just spoken to her.
Fully dressed and with Bill by my side, I met with my breast surgeon. With sullen, edgy looks she and I exchanged how disappointed we were with the situation. She left to consult with the radiologist before they did the ultrasound. I changed into the Johnny and laid down, staring at the ceiling, again wondering if this was really happening to me. Bill sat quietly in the corner. The tech came back. “What do you have on your neck?” I explained where I had just come from and told her I had to use alcohol to get it off. “Do you want me to wash it off?” Still seeking some control, I tartly replied, “Only if you don’t charge me for it.” “It’s a freebie.” She wiped my neck so tenderly that tears welled up in my eyes.
Then she asked if she could get me anything. “A beer would taste really good right now.” She chuckled, then we bantered a bit.
Tech: “What do you do?”
Me, as the tears started rolling down the side of my face: “I’m a full-time Mom. I have two sons, and I can’t talk about them lying in a hospital bed.”
Tech: “I’m so sorry! Where did you grow up?”
How did she know these were my two touchstones? Me, more tears flowing through the gates: “Iowa, and I can’t talk about that either.”
Tech: “I’m trying to make you feel better and NOT doing a very good job!”
We were both laughing as my eyes soaked the sheet behind my ears.
Me: “I can talk about cancer in the hospital without crying!”
And, being a tech, she said, “I can’t talk to you about that!”
Me: “Weather has been nice, huh?”
The surgeon and radiologist came back in and went to work, conversing in scientific jargon. My surgeon apologized for the foreign language. I told her I was on Wingaersheek Beach and to just to let me know when she was done and what they decided. At one point, I was wiggling trying to wipe a tickly tear in my hairline. The tech saw it and wiped it away for me.
They left the room to consult and to let me get dressed. I’m guessing the tech had tipped them off about my love for the Johnny. My surgeon came back in and told me the ultrasound was inconclusive. She said, “I say we just take it out tomorrow.” What I wanted to hear. No messing with biopsies, just get it out. Be sure. She was as fed up as I was. Patients waited for weeks to get into her OR, she was going to make this happen tomorrow.
Before my 1 p.m. surgery the following day, the radiologist drained fluid that had built up after the previous surgeries. Then he placed a wire to mark the new questionable spot. Neither were pleasant procedures. I told the radiologist it was nice to see him again, but I didn’t want to see him again in the near future. We both smiled as we shook hands.
Surgery went well. After having already had two surgeries there, I knew the staff; it felt like old home week. I left the hospital with bandages sticking out above my collar on the left side, matching those on the right covering my port. I really did look like a Warrior Princess, minus the orange war paint on my neck. I spent the next several days icing my wounds. That battle officially ended a few days later with a call from my surgeon to say the spot was benign, probably scarring from the first two surgeries.
I was back on the chemo highway.
There have been pivotal moments on this journey with such rawness that I block them from my own immediate recollection. There’s no way I could immediately share this experience. First body and spirit needed to go through a healing process. I jot notes during these times but don’t want to relive it through sharing it soon after the event. Now, months later, finally I can look back, reflect, and even laugh. But those tears that day felt like salt pouring in an open wound before the first incision was even made. It took weeks for the emotional pain to dissipate. Even as I wrote this and re-read it and re-read it, my Warrior Princess teeth clenched in defense. I’m going to post it now and release my jaw.
Staying strong,
Linda
Clashing PJs? What PJs?
(Original post date: January 7, 2010)
Now that cold weather has settled in, my going to bed routine means leaving my PJ bottoms on because the sheets are so cool. I go to bed bundled up, complete with my Noddy hat and my pink fuzzy socks. Then between 2 and 3 a.m. the heat kicks on: my internal thermostat erupts and a full-out night sweat ensues. In a sleepy fog, I take my hat off first, then my socks, to let the heat out on either end. Sometimes that does the trick. After one of these first events, I woke up in the morning with nothing on and the sheets thrown off. It caught me off guard. My memory went back to going to bed all covered up and tucked in. The middle of the night stripping had slipped my mind. I was shocked to wake up and see my PJ’s not on but in a pile by the bed. Bill, hearing me rustle around, turned over, saw me, and from beneath our heavy comforter said, “What ARE you doing?” I really didn’t know. “I guess I got hot.”
Another side effect of chemo: early menopause. This night sweat stuff isn’t new to me. When going through infertility treatments years ago, some of the meds gave me hot flashes and night sweats. That was temporary. This, well who knows how long I’ll be stripping in the early a.m. It’s accentuated even more due to the medicine I’m on in the trial. It’s called Triptorelin, and it wipes out hormones produced by my ovaries. The type of breast cancer I had is estrogen and progesterone receptive. Basically that means these hormones feed this kind of cancer. So by knocking the hormones out of my body, that’s one way of diminishing the chances of the cancer returning.
The silver lining in this is the fact that endometriosis is also fed by estrogen. So now after 30 some years of come and go pain from endometriosis, that too will stop. The physical pain I’ve experienced with cancer through surgeries and chemo side effects has not touched the pain level of endometriosis. Endometriosis is a result of tissue from the uterus escaping and settling elsewhere in the body and releasing fluids every month which have nowhere to go.
At the height of an endometriosis outbreak, over 10 years ago, I had flown to Seattle to join Bill for a weekend after a business trip. We were on separate return flights home. On Sunday morning I was going to poke around downtown then catch my afternoon flight. Bill had a morning flight. Plans changed when I woke up. The pain was so bad I couldn’t walk. I reached for my Advil bottle and took four pills. I scooted Bill off to catch his flight, promising I would be fine after the Advil kicked in. I can’t imagine how unconvincing I was curled up in a ball on the couch. Every moment of “pain” I have, I hold up to that day, and thus far, nothing has come close to it. Even this all-body achiness and the fleeting pains chasing me around for four days aren’t doubling me over like the pain from endometriosis.
Little research has been done on endometriosis. I picked up the Boston Globe a few days ago and saw a woman who I believe will someday be a hero for women suffering with this. She has started a research lab at MIT in Boston, focusing on endometriosis. After suffering with it herself for years, after 15 surgeries and capping out at 24 Advil a day, she’s decided to delve into the problem. I can’t wait to see what she does: I’ve had four surgeries and capped out my Advil intake at 18 per day. This woman, Linda Griffith, is a professor of biological engineering and mechanical engineering. I hope she quickly makes up for the 20-year draught of research on causes and treatment of endometriosis. It’s painfully debilitating and often misdiagnosed. Many women silently struggle with it.
I’m not sure how I got here from my PJ discussion. But here I am.
:)
Linda
Now that cold weather has settled in, my going to bed routine means leaving my PJ bottoms on because the sheets are so cool. I go to bed bundled up, complete with my Noddy hat and my pink fuzzy socks. Then between 2 and 3 a.m. the heat kicks on: my internal thermostat erupts and a full-out night sweat ensues. In a sleepy fog, I take my hat off first, then my socks, to let the heat out on either end. Sometimes that does the trick. After one of these first events, I woke up in the morning with nothing on and the sheets thrown off. It caught me off guard. My memory went back to going to bed all covered up and tucked in. The middle of the night stripping had slipped my mind. I was shocked to wake up and see my PJ’s not on but in a pile by the bed. Bill, hearing me rustle around, turned over, saw me, and from beneath our heavy comforter said, “What ARE you doing?” I really didn’t know. “I guess I got hot.”
Another side effect of chemo: early menopause. This night sweat stuff isn’t new to me. When going through infertility treatments years ago, some of the meds gave me hot flashes and night sweats. That was temporary. This, well who knows how long I’ll be stripping in the early a.m. It’s accentuated even more due to the medicine I’m on in the trial. It’s called Triptorelin, and it wipes out hormones produced by my ovaries. The type of breast cancer I had is estrogen and progesterone receptive. Basically that means these hormones feed this kind of cancer. So by knocking the hormones out of my body, that’s one way of diminishing the chances of the cancer returning.
The silver lining in this is the fact that endometriosis is also fed by estrogen. So now after 30 some years of come and go pain from endometriosis, that too will stop. The physical pain I’ve experienced with cancer through surgeries and chemo side effects has not touched the pain level of endometriosis. Endometriosis is a result of tissue from the uterus escaping and settling elsewhere in the body and releasing fluids every month which have nowhere to go.
At the height of an endometriosis outbreak, over 10 years ago, I had flown to Seattle to join Bill for a weekend after a business trip. We were on separate return flights home. On Sunday morning I was going to poke around downtown then catch my afternoon flight. Bill had a morning flight. Plans changed when I woke up. The pain was so bad I couldn’t walk. I reached for my Advil bottle and took four pills. I scooted Bill off to catch his flight, promising I would be fine after the Advil kicked in. I can’t imagine how unconvincing I was curled up in a ball on the couch. Every moment of “pain” I have, I hold up to that day, and thus far, nothing has come close to it. Even this all-body achiness and the fleeting pains chasing me around for four days aren’t doubling me over like the pain from endometriosis.
Little research has been done on endometriosis. I picked up the Boston Globe a few days ago and saw a woman who I believe will someday be a hero for women suffering with this. She has started a research lab at MIT in Boston, focusing on endometriosis. After suffering with it herself for years, after 15 surgeries and capping out at 24 Advil a day, she’s decided to delve into the problem. I can’t wait to see what she does: I’ve had four surgeries and capped out my Advil intake at 18 per day. This woman, Linda Griffith, is a professor of biological engineering and mechanical engineering. I hope she quickly makes up for the 20-year draught of research on causes and treatment of endometriosis. It’s painfully debilitating and often misdiagnosed. Many women silently struggle with it.
I’m not sure how I got here from my PJ discussion. But here I am.
:)
Linda
Hodge Podge
(Original post date: January 5, 2010)
Where to begin…
I’m feeling fine. At the last appointment on the 28th, the nurse practitioner reiterated that while on Taxol, my white blood cell count won’t go as low as it did on the first meds. When I told her I had been pretty cautious throughout the first four infusions, she said I didn’t need to worry so much. How much is so much?
We discovered in early December that we had a timeshare about to expire, so we made last minute plans to use it on Cape Cod, in Falmouth, over New Year’s weekend with our friends who used to live next door to us in Wakefield. I took my Clorox wipes. Debbie brought the Lysol. We met up on Friday afternoon and had dinner-in while the kids played. Their daughter is a year younger than Will and plans to marry him; his first kiss – and thus far his only – was with her around the age of two or three. Their son and Liam, close in age, have telepathic connections. Many days, a conversation with Debbie and hearing about her son’s and my son’s common actions and behaviors gives me grains of sanity. Although I don’t think Debbie’s son every made warm chocolate in the toilet for her… This was the first time we’ve been together, just the eight of us, since they moved nearly four years ago. We had a great laugh that evening. The next morning, well, between a bad rash and a throwing-up incident in their room, our neighbors packed and went home. That’s no small feat given we had packed planning to spend three winter days together. All are recovering, and although we missed our three-day weekend together, we had the gift of Friday night.
One thing about the Cape in the winter: there are no crowds of people… anywhere. The beaches were deserted, the restaurants were quiet, and the swimming pool was empty. I dropped the three boys off at the pool then went shopping in Falmouth. The shops were also deserted. We even had the aquarium in Wood’s Hole to ourselves for most of the visit. It was a low-key time away from a house packed with holiday over-indulgence. At the hotel, the sparse kitchen cupboards with only the bare minimums were a pleasure to open – nothing fell on our feet.
As I type this (6 p.m. Tue. the 5th), Bill and Liam have just landed in England. Bill’s sister is going away with her family for a long weekend, so Bill and Liam are going to keep Grandma company. Will is back at school, mildly confused as he didn’t think he would be going back until “next year” and when he went back that he would be in 1st grade… He’s still in kindergarten.
With Bill away, I’ve changed my next chemo date from Friday, January 8th to Monday, January 11th. Only one more after that! Bill will be home Tuesday to manage evenings next week. In the meantime, Will and I will be enjoying a week-long game of Monopoly at the dining room table while Bill and Liam entertain abroad.
Hope your New Year is starting out well!
:)
Linda
Where to begin…
I’m feeling fine. At the last appointment on the 28th, the nurse practitioner reiterated that while on Taxol, my white blood cell count won’t go as low as it did on the first meds. When I told her I had been pretty cautious throughout the first four infusions, she said I didn’t need to worry so much. How much is so much?
We discovered in early December that we had a timeshare about to expire, so we made last minute plans to use it on Cape Cod, in Falmouth, over New Year’s weekend with our friends who used to live next door to us in Wakefield. I took my Clorox wipes. Debbie brought the Lysol. We met up on Friday afternoon and had dinner-in while the kids played. Their daughter is a year younger than Will and plans to marry him; his first kiss – and thus far his only – was with her around the age of two or three. Their son and Liam, close in age, have telepathic connections. Many days, a conversation with Debbie and hearing about her son’s and my son’s common actions and behaviors gives me grains of sanity. Although I don’t think Debbie’s son every made warm chocolate in the toilet for her… This was the first time we’ve been together, just the eight of us, since they moved nearly four years ago. We had a great laugh that evening. The next morning, well, between a bad rash and a throwing-up incident in their room, our neighbors packed and went home. That’s no small feat given we had packed planning to spend three winter days together. All are recovering, and although we missed our three-day weekend together, we had the gift of Friday night.
One thing about the Cape in the winter: there are no crowds of people… anywhere. The beaches were deserted, the restaurants were quiet, and the swimming pool was empty. I dropped the three boys off at the pool then went shopping in Falmouth. The shops were also deserted. We even had the aquarium in Wood’s Hole to ourselves for most of the visit. It was a low-key time away from a house packed with holiday over-indulgence. At the hotel, the sparse kitchen cupboards with only the bare minimums were a pleasure to open – nothing fell on our feet.
As I type this (6 p.m. Tue. the 5th), Bill and Liam have just landed in England. Bill’s sister is going away with her family for a long weekend, so Bill and Liam are going to keep Grandma company. Will is back at school, mildly confused as he didn’t think he would be going back until “next year” and when he went back that he would be in 1st grade… He’s still in kindergarten.
With Bill away, I’ve changed my next chemo date from Friday, January 8th to Monday, January 11th. Only one more after that! Bill will be home Tuesday to manage evenings next week. In the meantime, Will and I will be enjoying a week-long game of Monopoly at the dining room table while Bill and Liam entertain abroad.
Hope your New Year is starting out well!
:)
Linda
New Year’s Resolutions
(Original post date: January 1, 2010)
For once, I can make a few resolutions knowing full well they will happen in 2010. As I take a quick inventory, I see what is and what will be.
This is Day 5. Yesterday was the worst for aches. They hit muscles, joints, and surface flesh. Bill took the boys to a movie yesterday afternoon, and I took two pills and went to bed for the afternoon. The aches and pains are bizarre. When the ache hits a muscle, it feels like I’ve overdone it working out. A little heat or ice and it would feel better, but they are traveling aches. Sometimes a fleeting pain. Sometimes lasting for a few seconds or perhaps several minutes in one spot then moving on. I asked a nurse what exactly is happening to my muscles. Unsure, just a side effect. I asked about my big muscle: my heart. No impact on that. Resolution: On February 1st, after two more chemo treatments and six days of traveling aches, muscle aches will be my own – not chemically induced.
My fingernails are changing color. As they grow out, the beds are a bluish color with white flecks on them and they feel a little tingly. Grandma Baldwin used to say if you told a lie a white fleck would appear on your fingernail. I couldn’t tell this many lies and keep them all straight. Resolution: No white flecks by summer 2010.
Chemo works by killing fast-growing cells. That’s why I wake up in the middle of the night and in the morning with my nose feeling as dry as a brittle November leaf being blown hither by a cold late fall breeze. Lately, every morning I’ve been getting small nose bleeds because of the dryness. Resolution: I’m going to enjoy the humidity of the summer. This is a tough one… I’m not sure if I will be able to keep it.
My funky chicken arm is still numb most of the time. Surgery to remove the lymph nodes under my arm stirred up the nerve endings. They may sort themselves out over time; I may always have some residual nerve damage. Some days it feels like tight guitar strings are connecting my underarm with my biceps. Some days it feels like a golf ball is under my arm. Every day I have very little feeling on the surface of my triceps. After surgeries, I was afraid to shave under that arm because I couldn’t feel anything. Then when I started chemo, I was supposed to be careful not to nick myself. I finally got brave and used a trimmer. Resolution: No more underarm hair in 2010. If I’m still numb, I’ll call on Nair once the chemicals are out of my body.
And finally, my baldness. It will take a while for my hair to grow back. I’m hoping in time for beach weather this summer. It may grow in finer, or curlier, or straighter, or grayer. But it will grow back. Resolution: No more complaints about the thickness of my hair. No bad hair days. A day with hair will be a good day!
Staying strong,
Linda
For once, I can make a few resolutions knowing full well they will happen in 2010. As I take a quick inventory, I see what is and what will be.
This is Day 5. Yesterday was the worst for aches. They hit muscles, joints, and surface flesh. Bill took the boys to a movie yesterday afternoon, and I took two pills and went to bed for the afternoon. The aches and pains are bizarre. When the ache hits a muscle, it feels like I’ve overdone it working out. A little heat or ice and it would feel better, but they are traveling aches. Sometimes a fleeting pain. Sometimes lasting for a few seconds or perhaps several minutes in one spot then moving on. I asked a nurse what exactly is happening to my muscles. Unsure, just a side effect. I asked about my big muscle: my heart. No impact on that. Resolution: On February 1st, after two more chemo treatments and six days of traveling aches, muscle aches will be my own – not chemically induced.
My fingernails are changing color. As they grow out, the beds are a bluish color with white flecks on them and they feel a little tingly. Grandma Baldwin used to say if you told a lie a white fleck would appear on your fingernail. I couldn’t tell this many lies and keep them all straight. Resolution: No white flecks by summer 2010.
Chemo works by killing fast-growing cells. That’s why I wake up in the middle of the night and in the morning with my nose feeling as dry as a brittle November leaf being blown hither by a cold late fall breeze. Lately, every morning I’ve been getting small nose bleeds because of the dryness. Resolution: I’m going to enjoy the humidity of the summer. This is a tough one… I’m not sure if I will be able to keep it.
My funky chicken arm is still numb most of the time. Surgery to remove the lymph nodes under my arm stirred up the nerve endings. They may sort themselves out over time; I may always have some residual nerve damage. Some days it feels like tight guitar strings are connecting my underarm with my biceps. Some days it feels like a golf ball is under my arm. Every day I have very little feeling on the surface of my triceps. After surgeries, I was afraid to shave under that arm because I couldn’t feel anything. Then when I started chemo, I was supposed to be careful not to nick myself. I finally got brave and used a trimmer. Resolution: No more underarm hair in 2010. If I’m still numb, I’ll call on Nair once the chemicals are out of my body.
And finally, my baldness. It will take a while for my hair to grow back. I’m hoping in time for beach weather this summer. It may grow in finer, or curlier, or straighter, or grayer. But it will grow back. Resolution: No more complaints about the thickness of my hair. No bad hair days. A day with hair will be a good day!
Staying strong,
Linda
Iowa Trivia
(Original post date: December 30, 2009)
Some factual, some based on opinion…
Farmers “grow” corn and “raise” cattle. The two are not interchangeable.
Most discussed topic in Iowa: the weather.
The joke we’ve all heard: What does IOWA stand for? Idiots Out Wandering Around – but we know which state is famous for growing potatoes and which state is the Buckeye state. (P.S. from my cousin Jane: Iowa is always first or second in national education test scores.)
The state bird: Eastern gold finch.
State motto: Our liberties we prize and our rights we will retain.
The first person to feel a slump in the economy: the farmer.
The last person to feel a jump in the economy: the farmer.
Where most visitors congregate: the kitchen table. The path to the kitchen table is well-worn by farm boots. To go into the living room with boots on is a faux pas. Although it may be bemoaned, to the kitchen table is generally accepted.
Farmers discuss who and what they know and expect you to be on the inside; even in if you aren’t from there, the assumption is made that you’ll understand all references. Or, perhaps, it could be construed that if you don’t know it’s none of your business.
Two knives used in Iowa: the butcher knife – obvious use; the paring knife – all other cutting needs.
The state oven temperature: 350 degrees. I’m still leery of any recipe calling for a temperature of over 375 degrees. Ten more years living out-of-state and I might get a bit more comfortable with 450.
The state chicken part: the wishbone. We all fought for it. I’ve never seen it outside of Iowa.
The state line signs: “Welcome to Iowa. A place to grow.”
Bill’s sister’s description of Highway 20, a very straight road across Iowa: “This looks like a long road to nowhere.”
“Is this heaven?” “No, it’s Iowa.” – This famous baseball diamond still exists in Dyersville, IA, just off of Highway 20. Bill and I have played ball there in what seems to be a perpetual summer game. People bring picnics, gloves, bats and balls. Kids get 5 - 10 pitches. Players rotate through the positions without formal set-up or direction. Cornfields border the outfield. A little piece of heaven.
:)
Linda
Some factual, some based on opinion…
Farmers “grow” corn and “raise” cattle. The two are not interchangeable.
Most discussed topic in Iowa: the weather.
The joke we’ve all heard: What does IOWA stand for? Idiots Out Wandering Around – but we know which state is famous for growing potatoes and which state is the Buckeye state. (P.S. from my cousin Jane: Iowa is always first or second in national education test scores.)
The state bird: Eastern gold finch.
State motto: Our liberties we prize and our rights we will retain.
The first person to feel a slump in the economy: the farmer.
The last person to feel a jump in the economy: the farmer.
Where most visitors congregate: the kitchen table. The path to the kitchen table is well-worn by farm boots. To go into the living room with boots on is a faux pas. Although it may be bemoaned, to the kitchen table is generally accepted.
Farmers discuss who and what they know and expect you to be on the inside; even in if you aren’t from there, the assumption is made that you’ll understand all references. Or, perhaps, it could be construed that if you don’t know it’s none of your business.
Two knives used in Iowa: the butcher knife – obvious use; the paring knife – all other cutting needs.
The state oven temperature: 350 degrees. I’m still leery of any recipe calling for a temperature of over 375 degrees. Ten more years living out-of-state and I might get a bit more comfortable with 450.
The state chicken part: the wishbone. We all fought for it. I’ve never seen it outside of Iowa.
The state line signs: “Welcome to Iowa. A place to grow.”
Bill’s sister’s description of Highway 20, a very straight road across Iowa: “This looks like a long road to nowhere.”
“Is this heaven?” “No, it’s Iowa.” – This famous baseball diamond still exists in Dyersville, IA, just off of Highway 20. Bill and I have played ball there in what seems to be a perpetual summer game. People bring picnics, gloves, bats and balls. Kids get 5 - 10 pitches. Players rotate through the positions without formal set-up or direction. Cornfields border the outfield. A little piece of heaven.
:)
Linda
Hungry Cow Mentality
(Original post date: December 29, 2009)
All went well yesterday, yet another long day. However, I made it through the second round of Taxol with no allergic reaction so my last two infusions should be OK. Allergic reactions usually happen in the first two rounds. I took my fuzzy pink socks and my fleece blanket but still couldn’t get to sleep when I felt the effects of Benedryl.
The countdown: two infusions left. I should feel myself, over the final aches from chemo, by February 1st.
I’m back to split shift sleeping. I was up from 1 – 4 a.m. last night. I took Ibuprofen at 4 a.m. as I felt my face start to ache. This morning I’m beet red in the face, so I called MGH. It’s a side effect of the 10 Decadrons I had in preparation for the infusion yesterday.
Yesterday, I needed a little inspiration before going back to MGH. I looked back to a journal entry I made at the end of July after talking to my dad.
July 30, 2009
Dad told me about the neighbor’s cattle getting into his cornfield on the west side of the lane. I asked if something spooked them and if that’s why they lunged through the barb wire fence. Dad thinks they were just trying to get food – not getting fed enough on their side of the fence so they just “went for it” to get the corn. Throwing all thought to harm aside, crashing through to get what they needed: healthy food. Perhaps I will need a hungry cow mentality through chemo. Stop clambering over the fence. Take a deep breath. Cuss a little bit. And go headlong through it, pounding hooves until the last round… and getting what I want on the other side. Leaving cancer behind me.
End of journal entry.
It worked. I put on my gingerbread fleece hat, dangly earrings, and walked into MGH ready to give the fence another strong, solid kick. Mom has always said “kill them with kindness.” Yesterday I turned that to mean keep a smile on my face. I smiled. I said “hi” to the familiar faces, and they returned my smile. I was glad to see those who were helping me kick the fence down. I relied on words from both Mom and Dad yesterday. My face wasn’t going to be one worn down with this exercise. At the end of the six-hour day, my chemo nurse said, “I’m really proud of you. You are sailing through this. And I really mean that.”
I didn’t explain my hungry cow inspirational reading from the night before or the killing with kindness theory. I just said ‘thank you’ when she gave me a big hug as we left to pick up the boys.
Staying strong,
Linda
All went well yesterday, yet another long day. However, I made it through the second round of Taxol with no allergic reaction so my last two infusions should be OK. Allergic reactions usually happen in the first two rounds. I took my fuzzy pink socks and my fleece blanket but still couldn’t get to sleep when I felt the effects of Benedryl.
The countdown: two infusions left. I should feel myself, over the final aches from chemo, by February 1st.
I’m back to split shift sleeping. I was up from 1 – 4 a.m. last night. I took Ibuprofen at 4 a.m. as I felt my face start to ache. This morning I’m beet red in the face, so I called MGH. It’s a side effect of the 10 Decadrons I had in preparation for the infusion yesterday.
Yesterday, I needed a little inspiration before going back to MGH. I looked back to a journal entry I made at the end of July after talking to my dad.
July 30, 2009
Dad told me about the neighbor’s cattle getting into his cornfield on the west side of the lane. I asked if something spooked them and if that’s why they lunged through the barb wire fence. Dad thinks they were just trying to get food – not getting fed enough on their side of the fence so they just “went for it” to get the corn. Throwing all thought to harm aside, crashing through to get what they needed: healthy food. Perhaps I will need a hungry cow mentality through chemo. Stop clambering over the fence. Take a deep breath. Cuss a little bit. And go headlong through it, pounding hooves until the last round… and getting what I want on the other side. Leaving cancer behind me.
End of journal entry.
It worked. I put on my gingerbread fleece hat, dangly earrings, and walked into MGH ready to give the fence another strong, solid kick. Mom has always said “kill them with kindness.” Yesterday I turned that to mean keep a smile on my face. I smiled. I said “hi” to the familiar faces, and they returned my smile. I was glad to see those who were helping me kick the fence down. I relied on words from both Mom and Dad yesterday. My face wasn’t going to be one worn down with this exercise. At the end of the six-hour day, my chemo nurse said, “I’m really proud of you. You are sailing through this. And I really mean that.”
I didn’t explain my hungry cow inspirational reading from the night before or the killing with kindness theory. I just said ‘thank you’ when she gave me a big hug as we left to pick up the boys.
Staying strong,
Linda
Back to Work
(Original post date: December 28, 2009)
This morning some people are taking a deep breath or sighing in relief that this four days of craziness has ended. I could quite happily exist in that unending pandemonium for a few more days. Instead, I’m heading to Boston at noon for my second Taxol treatment. I took five Decadron last night and will take five more this morning to help prepare my body. It's a double duty med as I used it to keep nausea at bay after the first four treatments, now it will help my body accept Taxol. I’m expecting another seven-hour day and truthfully I’m not too excited about it.
Perhaps it was Christmas coming, but I felt great after the last round of aches through Day 5. It was hard to keep a short leash. I kept thinking of things to do and places to go to celebrate the approaching holiday. All involved crowds of strange grown-ups and children. The Nutcracker Ballet. The Polar Express train ride. Taking the boys to Boston. Running to the mall. I was talking to a friend about this and she suggested just picking one thing and doing it. That was Bill’s work party. All grown-ups. Bill served up my food so I wouldn’t have to touch buffet spoon handles. It worked, and it was nice to dress up and get out. Actually, it worked so well, I decided to go to our neighbors' holiday party a week later -- again all grown-ups and Bill helped me with serving utensils. Another bubbly fun night out.
I went to Bill’s party the eve after my first Taxol treatment. That day at MGH, we had a little extra time between appointments. Bill and I popped into a little boutique for breast cancer patients to see if I could find a festive hat to wear to the party instead of the wig. Several hats were enormous, way too big for my head. Then I saw an adorable black derby-like hat with a small rhinestone pattern on the side and a very thin brim. It looked great on! I turned to Bill to see what he thought. When I looked up at him, the little brim hit the back of my neck and the hat rolled off my head, took a couple bounces, and landed on the floor four or five feet away from me. We cracked up. I thought it was a fluke, but it happened again on the second try.
The saleswoman, who was watching this unfold, suggested wearing a scarf underneath. That seemed to make sense: the hat wouldn’t be against my smooth scalp – the scarf might act like an adhesive. So we tried that. It was a little more stable, but then I threw my head back faking a big laugh and POP! Off it went with a little more force, landing further away. “Guess I’m not wearing a hat tonight!” I told Bill. We thanked the saleswoman. She gave us a rather pitiful “you-have-cancer-AND-the-hat-won’t-stay-on-your-head look.” Later I thought I should have told her I probably could have done the same trick with a full head of hair.
Given I’m 5’4” and a good portion of the Bill’s colleagues are over 6’, I’m glad we discovered the magic in the hat at the store rather than at the party. Although, with a different set of guests, it would have been a very funny party trick. ;)
Staying strong and going back to work,
Linda
This morning some people are taking a deep breath or sighing in relief that this four days of craziness has ended. I could quite happily exist in that unending pandemonium for a few more days. Instead, I’m heading to Boston at noon for my second Taxol treatment. I took five Decadron last night and will take five more this morning to help prepare my body. It's a double duty med as I used it to keep nausea at bay after the first four treatments, now it will help my body accept Taxol. I’m expecting another seven-hour day and truthfully I’m not too excited about it.
Perhaps it was Christmas coming, but I felt great after the last round of aches through Day 5. It was hard to keep a short leash. I kept thinking of things to do and places to go to celebrate the approaching holiday. All involved crowds of strange grown-ups and children. The Nutcracker Ballet. The Polar Express train ride. Taking the boys to Boston. Running to the mall. I was talking to a friend about this and she suggested just picking one thing and doing it. That was Bill’s work party. All grown-ups. Bill served up my food so I wouldn’t have to touch buffet spoon handles. It worked, and it was nice to dress up and get out. Actually, it worked so well, I decided to go to our neighbors' holiday party a week later -- again all grown-ups and Bill helped me with serving utensils. Another bubbly fun night out.
I went to Bill’s party the eve after my first Taxol treatment. That day at MGH, we had a little extra time between appointments. Bill and I popped into a little boutique for breast cancer patients to see if I could find a festive hat to wear to the party instead of the wig. Several hats were enormous, way too big for my head. Then I saw an adorable black derby-like hat with a small rhinestone pattern on the side and a very thin brim. It looked great on! I turned to Bill to see what he thought. When I looked up at him, the little brim hit the back of my neck and the hat rolled off my head, took a couple bounces, and landed on the floor four or five feet away from me. We cracked up. I thought it was a fluke, but it happened again on the second try.
The saleswoman, who was watching this unfold, suggested wearing a scarf underneath. That seemed to make sense: the hat wouldn’t be against my smooth scalp – the scarf might act like an adhesive. So we tried that. It was a little more stable, but then I threw my head back faking a big laugh and POP! Off it went with a little more force, landing further away. “Guess I’m not wearing a hat tonight!” I told Bill. We thanked the saleswoman. She gave us a rather pitiful “you-have-cancer-AND-the-hat-won’t-stay-on-your-head look.” Later I thought I should have told her I probably could have done the same trick with a full head of hair.
Given I’m 5’4” and a good portion of the Bill’s colleagues are over 6’, I’m glad we discovered the magic in the hat at the store rather than at the party. Although, with a different set of guests, it would have been a very funny party trick. ;)
Staying strong and going back to work,
Linda
Tuesday, April 26, 2011
Capturing Christmas Week in Quotes
(Original post date: December 24, 2009)
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
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
(Original post date: December 22, 2009)
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."
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."
Chemo Fog
(Original post date: December 20, 2009)
Talking with my oncologist before starting chemo, he asked where I had had a particular test done. I told him I couldn’t remember, that I was struggling with pre-chemo fog. He told me that researchers are studying “chemo fog” to determine if it’s due to chemo or just the stress of having cancer. I’m guessing it’s the stress. It feels very similar to toddler fog. No chemicals involved in that, just a few sleepless nights.
I’m not writing as many lists, trying to capture every tidbit of life’s to-do’s. Many weeks I hone in on the basics: food, clothing, shelter. During the chemo weeks, friends have been a godsend with food. I get a Peapod order together for the weekend, and at last I’m thankful that the boys love mac’n’cheese. I go to the sanctity of the laundry pile when towels and underwear are low. I make sure the mortgage and the utilities are paid.
The next level: taking care of personal needs. Ordering a prescription for Bill. Taking the boys for a haircut. Buying shampoo for myself. Just kidding. ;) I’m realizing how much we are all capable of doing, and I am learning to delegate more. We’ve eaten together as a family of four for three years. Plates, glasses, and silverware have been thoroughly defined. Rather than a beck and call girl to get dinner on the table, I enlist a little help to set and to clear the table.
From here, I start slipping.
The school cold lunch routine is laughable. I have done well not to forget to pack the lunches and the school bags. Always pushing the clock to get Will to kindergarten on time, I often drop lunch bags in our booster seats by the school office, with the intent to put them in the fridge after I take the boys to their classes. I do this discreetly so Liam doesn’t notice and want to stuff them into the fridge himself, making us tardy. In late September, Liam’s teacher told me she had found the bags outside the office and was a little confused by why they were there. Will’s teacher, standing nearby, added that she had found them there a few times as well. As for me – no idea that I had been zipping right past them nearly every morning! I THINK I’m doing a bit better now, but the kids and the teachers have it under control. If the lunch bags aren’t in the fridge, they know to look in the booster seats.
Conversations I have, especially just after chemo, are hit and miss as to what I’ll remember. I will get off the phone and think, “Now why did Jen call?” If the conversation is date related, I stand at the calendar while talking. I don’t want to miss someone stopping by or something going on at school. Still, Will’s parent/teacher conferences came and went without me signing up for a slot, but we rescheduled and made it up.
My mind works like a sieve. Being a recovering perfectionist, my pre-cancer/chemo sieve had tiny holes in it, letting virtually nothing escape. Keeping to-do lists at hand that were a mile long and never completed. The fog has enlarged the holes in the sieve. The rocks – food, clothing and shelter – can’t drop through the holes. The marbles – taking care of personal needs – generally can’t drop through. As for the pebbles and sand, hit and miss. If I get it on the calendar, it’s a hit. The strange thing is that I’m pretty much OK with this. I’m not stressing out over little things. I’m not over-committing. I’m working on Christmas cards. If all aren’t sent before Christmas, I’ll be wishing friends and family a Happy New Year or Happy Valentine’s Day. People do enjoy receiving mail at times other than the holidays. Santa’s letters aren’t written yet, but he doesn’t fly until Christmas Eve and has enough elfin magic to work on short notice. Plus, he already knows the kids have been nice. We bought a real tree and decorated it not in an afternoon but gradually over the course of two days. It’s up; it’s beautiful; all boxes are now out of the dining room and back in the loft.
I can’t clear all the fog. But with a little red-nosed glow, I can get to where I need to be. In the moment. Confident that the details, if really necessary, will one way or another get sorted out.
Staying strong and wishing all of you a glowing holiday,
Linda
Talking with my oncologist before starting chemo, he asked where I had had a particular test done. I told him I couldn’t remember, that I was struggling with pre-chemo fog. He told me that researchers are studying “chemo fog” to determine if it’s due to chemo or just the stress of having cancer. I’m guessing it’s the stress. It feels very similar to toddler fog. No chemicals involved in that, just a few sleepless nights.
I’m not writing as many lists, trying to capture every tidbit of life’s to-do’s. Many weeks I hone in on the basics: food, clothing, shelter. During the chemo weeks, friends have been a godsend with food. I get a Peapod order together for the weekend, and at last I’m thankful that the boys love mac’n’cheese. I go to the sanctity of the laundry pile when towels and underwear are low. I make sure the mortgage and the utilities are paid.
The next level: taking care of personal needs. Ordering a prescription for Bill. Taking the boys for a haircut. Buying shampoo for myself. Just kidding. ;) I’m realizing how much we are all capable of doing, and I am learning to delegate more. We’ve eaten together as a family of four for three years. Plates, glasses, and silverware have been thoroughly defined. Rather than a beck and call girl to get dinner on the table, I enlist a little help to set and to clear the table.
From here, I start slipping.
The school cold lunch routine is laughable. I have done well not to forget to pack the lunches and the school bags. Always pushing the clock to get Will to kindergarten on time, I often drop lunch bags in our booster seats by the school office, with the intent to put them in the fridge after I take the boys to their classes. I do this discreetly so Liam doesn’t notice and want to stuff them into the fridge himself, making us tardy. In late September, Liam’s teacher told me she had found the bags outside the office and was a little confused by why they were there. Will’s teacher, standing nearby, added that she had found them there a few times as well. As for me – no idea that I had been zipping right past them nearly every morning! I THINK I’m doing a bit better now, but the kids and the teachers have it under control. If the lunch bags aren’t in the fridge, they know to look in the booster seats.
Conversations I have, especially just after chemo, are hit and miss as to what I’ll remember. I will get off the phone and think, “Now why did Jen call?” If the conversation is date related, I stand at the calendar while talking. I don’t want to miss someone stopping by or something going on at school. Still, Will’s parent/teacher conferences came and went without me signing up for a slot, but we rescheduled and made it up.
My mind works like a sieve. Being a recovering perfectionist, my pre-cancer/chemo sieve had tiny holes in it, letting virtually nothing escape. Keeping to-do lists at hand that were a mile long and never completed. The fog has enlarged the holes in the sieve. The rocks – food, clothing and shelter – can’t drop through the holes. The marbles – taking care of personal needs – generally can’t drop through. As for the pebbles and sand, hit and miss. If I get it on the calendar, it’s a hit. The strange thing is that I’m pretty much OK with this. I’m not stressing out over little things. I’m not over-committing. I’m working on Christmas cards. If all aren’t sent before Christmas, I’ll be wishing friends and family a Happy New Year or Happy Valentine’s Day. People do enjoy receiving mail at times other than the holidays. Santa’s letters aren’t written yet, but he doesn’t fly until Christmas Eve and has enough elfin magic to work on short notice. Plus, he already knows the kids have been nice. We bought a real tree and decorated it not in an afternoon but gradually over the course of two days. It’s up; it’s beautiful; all boxes are now out of the dining room and back in the loft.
I can’t clear all the fog. But with a little red-nosed glow, I can get to where I need to be. In the moment. Confident that the details, if really necessary, will one way or another get sorted out.
Staying strong and wishing all of you a glowing holiday,
Linda
Dancing with a Foreign City Slicker
(Original post date: December 17, 2009)
In 1989, a friend introduced me to her soccer coach but told me to take heed as he was a real partier. Six weeks later, I was dating this humorous man with an intriguing English accent. Three months later, we were driving to Iowa to spend Easter with my family. After we crossed the Mississippi River and entered Iowa farm country, I began my tutorial in Manure 101. The smells along the way were clearly defined for me by my nose. I tried to describe the scent we smelled so as to help Bill differentiate between cow and pig. They were so obviously different; I was having a hard time understanding why he couldn’t smell the difference. Pig manure is stringent. It really stinks and lingers unpleasantly. Cow manure is mellower; it lacks the pungency of that of the smaller hoofed animal. While this lesson entertained us for 1 ½ hours, I was unsuccessful. About five years later, I would realize that Bill really can’t smell much of anything. During this trip, he was most likely making guesses based on nothing he could smell. He was just appeasing me. Wooing me across the heartland.
Arriving at my parents’ house, Bill picked up his duffel bag and I heard a clanking. I asked what it was. “I brought a couple bottles of wine for your parents.” I popped his bubble, “Oh…. They don’t drink.” This grandson of a London pub owner looked at me somewhat bewildered. After the Easter turkey dinner, the bewildered looks jumped to the Murphys. As Bill stood up to help Mom clear the table, amidst blank looks from all the other men still seated around the table, Bill asked, “Could we save the turkey drippings for breakfast?” “Of course,” my mom obligingly replied. She didn’t ask questions. The next morning, baffled by how Bill was planning to dine on drippings, Mom offered to heat them up for Bill. Bill replied, “Oh, no thank you. I just spread it on toast.” “Oh… OK.” No one joined him. (Sidebar: According to Bill, this year’s drippings were excellent. The butter and whole herbs must have added to the flavor. I was also informed that his morning-after tradition isn’t as enjoyable if I’m in the kitchen. In my presence, he feels guilty slathering on the turkey fat. My look has nothing to do with his arteries; I’m just still a little grossed out by the breakfast, even after twenty years of the tradition. “You don’t have turkey drippings every day. I really don’t mind if you have it on occasion,” thinking quietly to myself, just don’t expect me to join in any time soon.)
After we were married, trips to Iowa continued to be learning experiences for all involved. Bill loves getting his hands dirty in projects with Dad and my brothers. One day Dad told Bill to get a pitch fork out of the barn. He went to the middle of the barnyard, stopped, looked at the four buildings, and then came to find me. “Linda, there are four barns out there. How am I supposed to know which one the fork is in?” I went outside with him and started my Barnyard Building 101 tutorial. I pointed to each one and identified them: the shop, the corn crib, the hay shed, and, finally, the barn. I half expected to see Dad laughing behind one of the buildings.
A couple years later, on another adventure in Iowa during corn picking season, all the machinery was in the barnyard. Bill came over to me and said, “You’ve got to see this little field mouse by the combine tire. It’s tiny and the tire is so huge.” I asked, “It’s just sitting there?” thinking it was probably sick. Bill nodded with a smile. I went and had a look. Dad came over to see what we were gawking at. He looked down. “What the hell?” Then… stomp. My delicate dance I had been doing with a foot on either side of the Mississippi ended in a collision of unspeakable magnitude. City meet farm. Dad didn’t miss a beat; he went back to work, but I’m sure Bill’s heart momentarily stopped beating. We didn’t talk about the incident on Murphy soil, but later that day, about the time we were crossing the Mississippi on the way home to Illinois, Bill simply said, “Ya know, I’ve been thinking about that mouse.” I tried to explain that to Dad it was a small version of a big rat, and rats tend to run up pant legs on occasion. Again, my explanation was unsuccessful.
After the mouse incident, Bill placed a special order when Mom wondered what cuts we wanted from our half a hog. Bill asked Mom to get the kidneys for him. “Of course,” mom obligingly replied. This time he explained. Steak and kidney pie was a tradition in England. I’m not sure how Mom told the butcher she wanted pork kidneys, normally refuse. Perhaps the explanation went something like, “You see, my daughter is dancing with a foreign city slicker…”
:)
Linda
In 1989, a friend introduced me to her soccer coach but told me to take heed as he was a real partier. Six weeks later, I was dating this humorous man with an intriguing English accent. Three months later, we were driving to Iowa to spend Easter with my family. After we crossed the Mississippi River and entered Iowa farm country, I began my tutorial in Manure 101. The smells along the way were clearly defined for me by my nose. I tried to describe the scent we smelled so as to help Bill differentiate between cow and pig. They were so obviously different; I was having a hard time understanding why he couldn’t smell the difference. Pig manure is stringent. It really stinks and lingers unpleasantly. Cow manure is mellower; it lacks the pungency of that of the smaller hoofed animal. While this lesson entertained us for 1 ½ hours, I was unsuccessful. About five years later, I would realize that Bill really can’t smell much of anything. During this trip, he was most likely making guesses based on nothing he could smell. He was just appeasing me. Wooing me across the heartland.
Arriving at my parents’ house, Bill picked up his duffel bag and I heard a clanking. I asked what it was. “I brought a couple bottles of wine for your parents.” I popped his bubble, “Oh…. They don’t drink.” This grandson of a London pub owner looked at me somewhat bewildered. After the Easter turkey dinner, the bewildered looks jumped to the Murphys. As Bill stood up to help Mom clear the table, amidst blank looks from all the other men still seated around the table, Bill asked, “Could we save the turkey drippings for breakfast?” “Of course,” my mom obligingly replied. She didn’t ask questions. The next morning, baffled by how Bill was planning to dine on drippings, Mom offered to heat them up for Bill. Bill replied, “Oh, no thank you. I just spread it on toast.” “Oh… OK.” No one joined him. (Sidebar: According to Bill, this year’s drippings were excellent. The butter and whole herbs must have added to the flavor. I was also informed that his morning-after tradition isn’t as enjoyable if I’m in the kitchen. In my presence, he feels guilty slathering on the turkey fat. My look has nothing to do with his arteries; I’m just still a little grossed out by the breakfast, even after twenty years of the tradition. “You don’t have turkey drippings every day. I really don’t mind if you have it on occasion,” thinking quietly to myself, just don’t expect me to join in any time soon.)
After we were married, trips to Iowa continued to be learning experiences for all involved. Bill loves getting his hands dirty in projects with Dad and my brothers. One day Dad told Bill to get a pitch fork out of the barn. He went to the middle of the barnyard, stopped, looked at the four buildings, and then came to find me. “Linda, there are four barns out there. How am I supposed to know which one the fork is in?” I went outside with him and started my Barnyard Building 101 tutorial. I pointed to each one and identified them: the shop, the corn crib, the hay shed, and, finally, the barn. I half expected to see Dad laughing behind one of the buildings.
A couple years later, on another adventure in Iowa during corn picking season, all the machinery was in the barnyard. Bill came over to me and said, “You’ve got to see this little field mouse by the combine tire. It’s tiny and the tire is so huge.” I asked, “It’s just sitting there?” thinking it was probably sick. Bill nodded with a smile. I went and had a look. Dad came over to see what we were gawking at. He looked down. “What the hell?” Then… stomp. My delicate dance I had been doing with a foot on either side of the Mississippi ended in a collision of unspeakable magnitude. City meet farm. Dad didn’t miss a beat; he went back to work, but I’m sure Bill’s heart momentarily stopped beating. We didn’t talk about the incident on Murphy soil, but later that day, about the time we were crossing the Mississippi on the way home to Illinois, Bill simply said, “Ya know, I’ve been thinking about that mouse.” I tried to explain that to Dad it was a small version of a big rat, and rats tend to run up pant legs on occasion. Again, my explanation was unsuccessful.
After the mouse incident, Bill placed a special order when Mom wondered what cuts we wanted from our half a hog. Bill asked Mom to get the kidneys for him. “Of course,” mom obligingly replied. This time he explained. Steak and kidney pie was a tradition in England. I’m not sure how Mom told the butcher she wanted pork kidneys, normally refuse. Perhaps the explanation went something like, “You see, my daughter is dancing with a foreign city slicker…”
:)
Linda
Strong Urges
(Original post date: December 16, 2009)
Since August I’ve been given numerous fliers and web sites to study the side effects of the three chemo meds that are in my protocol. I’ve been meaning to sit down and spend a day studying all of it, yet I haven’t made the time. What a dreary day that would be. I’ve scanned the information, but not memorized it so as to make each one come to life through fear.
During appointments, I talk to my doctors about the most likely side effects and how to manage them. I email or call my doctors when I have a question. I call the strong formidable women who’ve walked this road and ask pointed questions. These women know first-hand what to expect and they are usually right on.
Over the last few months, these same women have shared a more important list of “side effects” they’ve experienced through cancer and/or chemo. From their knowledge and my experience, I’ve made my own list:
Strong urges…
To live
To rip off my wig in front of two women smoking on Main Street and scream, “Are you crazy? Don’t invite it in!” (No I didn’t, but the urge was nearly unstoppable.)
To speak my opinion
To vigorously write
To protect my port from hot shower water, afraid the metal might overheat under my skin. (Probably an unrealistic fear.)
To do
To not wait for the perfect time
To make my head comfortable – hat on, hat off, wig on, wig off – throughout the day and night
To get on my knees and play
To pray
I don’t recall any of these side effects listed in the information dispersed from the medical community. Yet, for me, they are real.
Staying strong,
Linda
Since August I’ve been given numerous fliers and web sites to study the side effects of the three chemo meds that are in my protocol. I’ve been meaning to sit down and spend a day studying all of it, yet I haven’t made the time. What a dreary day that would be. I’ve scanned the information, but not memorized it so as to make each one come to life through fear.
During appointments, I talk to my doctors about the most likely side effects and how to manage them. I email or call my doctors when I have a question. I call the strong formidable women who’ve walked this road and ask pointed questions. These women know first-hand what to expect and they are usually right on.
Over the last few months, these same women have shared a more important list of “side effects” they’ve experienced through cancer and/or chemo. From their knowledge and my experience, I’ve made my own list:
Strong urges…
To live
To rip off my wig in front of two women smoking on Main Street and scream, “Are you crazy? Don’t invite it in!” (No I didn’t, but the urge was nearly unstoppable.)
To speak my opinion
To vigorously write
To protect my port from hot shower water, afraid the metal might overheat under my skin. (Probably an unrealistic fear.)
To do
To not wait for the perfect time
To make my head comfortable – hat on, hat off, wig on, wig off – throughout the day and night
To get on my knees and play
To pray
I don’t recall any of these side effects listed in the information dispersed from the medical community. Yet, for me, they are real.
Staying strong,
Linda
“My Hair Will Fall Out”
(Original post date: December 14, 2009)
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
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
Impersonations
(Original post date: December 11, 2009)
Generally a stickler for calm, quiet, bedtime routines, lately I have wound up in Liam or Will’s bed breaking my own rule. One night, after reading books together in bed, Liam looked at me and whispered, “Mom, do big eyes!” So I opened my eyes as wide as I could. And his big chortle set off my giggles. When he caught his breath, “Again, Mom!” And I did. His belly laughs always remind me of my dad when he’s watching Laurel and Hardy or The Three Stooges. He turned to me a third time and I did big eyes without him asking. I can only describe this vision as a white egg with big eyes. Under his blanket we were little more than a gelatinous mound of laugh muscles.
Will’s favorite is my puffer fish. This is big eyes, plus puffed out cheeks. With my bald but spiky head, it’s pretty much a dead-on likeness. I puff up and as I’m about to turn blue, Will deflates me by pushing the air out of my cheeks. Leaving once again a heap of giggles, as he rubs my spiky head.
For bedtime my current hat of choice is light-weight and bright red. It’s extra big so there’s a puff at the back of my head. I often put it on upstairs before getting into bed, just to take the chill off. One night while I was sitting red-capped on the edge of the tub, brushing Will’s teeth on my normal perch, Bill walked in, grinned and said, “Do you know who you look like?” I knew where he was going. “Yes…. Noddy without the bell.” Laughing, he replied with a big, “YES!” He knows Noddy is my least favorite Sprout star. And there I sat, a replica of that icon.
One morning, running around with only a beach towel loosely draped over one shoulder, I caught a glimpse of myself in the bathroom mirror. I went into the kitchen and asked, “Who am I now?” I was going for Tibetan monk but Bill elevated me to a higher status. “Ghandi.”
Last Saturday morning when Liam and I were making blueberry muffins, Bill started filming the event. Lovely, I’m in my pajamas (matching!) and bra-less, previously wondering whether I wanted my bald era documented in moving pictures. I guess, yes. Bill chuckled as we worked, “Look out Barefoot Contessa, we have Bareheaded Contessa!” Then Will chimed in, “But Dad, Mom is barefoot too… She is the Barefoot and Bareheaded Contessa!!”
After bath time yesterday morning, I threw a bright blue beach towel over Will as he was crouched on another towel on the floor. They usually do snail impersonations after baths, but after reading a frog book the night before, I told Will he looked like a poisonous blue dart frog. As I turned and walked back into the kitchen, I heard a little voice, “OK , Spike! … Ya big porcupine!” He cracked me up. As I grappled with the name-calling, thinking it’s not the behavior normally accepted in this place, I resolved it with the thought that it’s not normal to have a bald mom! And we would just go with the humorous flow.
In September during a giggling episode in bed with Bill on the night of my radioactive PET scan day, I said to Bill, “Do you think being bald will be as funny as being radioactive? He closed the show with a one-liner, “Who loves you, baby?”
While I worked so hard pre-chemo to build my camouflage shtick, little did I know how much fresh material we would have mid-chemo when I took off my designer glasses.
Staying strong and laughing daily,
Linda
Generally a stickler for calm, quiet, bedtime routines, lately I have wound up in Liam or Will’s bed breaking my own rule. One night, after reading books together in bed, Liam looked at me and whispered, “Mom, do big eyes!” So I opened my eyes as wide as I could. And his big chortle set off my giggles. When he caught his breath, “Again, Mom!” And I did. His belly laughs always remind me of my dad when he’s watching Laurel and Hardy or The Three Stooges. He turned to me a third time and I did big eyes without him asking. I can only describe this vision as a white egg with big eyes. Under his blanket we were little more than a gelatinous mound of laugh muscles.
Will’s favorite is my puffer fish. This is big eyes, plus puffed out cheeks. With my bald but spiky head, it’s pretty much a dead-on likeness. I puff up and as I’m about to turn blue, Will deflates me by pushing the air out of my cheeks. Leaving once again a heap of giggles, as he rubs my spiky head.
For bedtime my current hat of choice is light-weight and bright red. It’s extra big so there’s a puff at the back of my head. I often put it on upstairs before getting into bed, just to take the chill off. One night while I was sitting red-capped on the edge of the tub, brushing Will’s teeth on my normal perch, Bill walked in, grinned and said, “Do you know who you look like?” I knew where he was going. “Yes…. Noddy without the bell.” Laughing, he replied with a big, “YES!” He knows Noddy is my least favorite Sprout star. And there I sat, a replica of that icon.
One morning, running around with only a beach towel loosely draped over one shoulder, I caught a glimpse of myself in the bathroom mirror. I went into the kitchen and asked, “Who am I now?” I was going for Tibetan monk but Bill elevated me to a higher status. “Ghandi.”
Last Saturday morning when Liam and I were making blueberry muffins, Bill started filming the event. Lovely, I’m in my pajamas (matching!) and bra-less, previously wondering whether I wanted my bald era documented in moving pictures. I guess, yes. Bill chuckled as we worked, “Look out Barefoot Contessa, we have Bareheaded Contessa!” Then Will chimed in, “But Dad, Mom is barefoot too… She is the Barefoot and Bareheaded Contessa!!”
After bath time yesterday morning, I threw a bright blue beach towel over Will as he was crouched on another towel on the floor. They usually do snail impersonations after baths, but after reading a frog book the night before, I told Will he looked like a poisonous blue dart frog. As I turned and walked back into the kitchen, I heard a little voice, “OK , Spike! … Ya big porcupine!” He cracked me up. As I grappled with the name-calling, thinking it’s not the behavior normally accepted in this place, I resolved it with the thought that it’s not normal to have a bald mom! And we would just go with the humorous flow.
In September during a giggling episode in bed with Bill on the night of my radioactive PET scan day, I said to Bill, “Do you think being bald will be as funny as being radioactive? He closed the show with a one-liner, “Who loves you, baby?”
While I worked so hard pre-chemo to build my camouflage shtick, little did I know how much fresh material we would have mid-chemo when I took off my designer glasses.
Staying strong and laughing daily,
Linda
Flow
(Original post date: December 10, 2009)
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
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
Wednesdays
(Original post date: December 9, 2009)
I have realized that Wednesdays are good. I’m either coming out of the fog and ache or coming out of the Nadir period. Wednesday before Thanksgiving I felt tightness all around my incision areas and in my chest. As no one from my oncologist’s office would be in Friday when my chemo was scheduled, I decided to have it checked out Wednesday. I was convinced it was probably fluid collecting, which can happen after this type of surgery, and it would need to be drained. Plus, I mentally needed confirmation that it wasn’t an infection before another hit to my immune system.
The nurse practitioner did a thorough exam and decided it wasn’t fluid. My lungs and heart sounded good. She looked at me and rubbed my left shoulder, “I think you’ve pulled muscles. You’re hunched over protecting your left side. Have you lifted more than normal?” Not that I could think of. “Do you have small children?”
Oh, do they count? I hesitated as the events of the last week flashed before me. Liam wiped out running full-out on the school pavement 100 yards from the van. Yes, there was that 40-pound dead-weight lift from the ground that day and the carry to the van. And then there was the rainy day I boosted him in and out of the van. And the day Will was in tears, so I swept him off the floor onto my lap. “Yes, I have small children.” I felt guilty confessing. “Do you lift them?” The viper-mom in me raised her head and started flicking her tongue, wanting to defend and if necessary attack. I so wanted to reply with my own question in Tom Cruise’s “You-can’t-handle-the-truth!” voice, “Do you have children?” But I stopped. Tamed the viper. I knew her job was to take care of me. My job is to take care of them. And we would have to negotiate a happy medium, which may include a little Ibuprofen to calm the muscles.
My prescription was for my husband to rub my left shoulder. I so wanted to ask for a written prescription to give Bill, but this was the first time I had met this nurse practitioner. I wasn’t sure about her humor level.
At 11:30, happily diagnosed with pulled muscles that required no draining, I decided I could celebrate by having lunch in Boston. White blood cells should have bounced back, appetite was good, achiness was gone. I confirmed with an employee in the elevator that Antonio’s, just across the street from the hospital, was a good little Italian spot. I felt like a kid in a four-story toy store; it was only the 2nd time I’ve been in a restaurant since early October. When I opened the door, the smells of tomato and garlic wafted by me. A crooning Frank Sinatra ushered my ears to the table. Sitting in a restaurant, able to eat shrimp over ziti in a vodka sauce with a little kick. Dipping fantastic fresh Italian bread in olive oil. (Admittedly, I did Purell after feeling the stickiness of the oil bottle. A little germy. Gross.) Then, Spumoni for dessert. But I couldn’t stop there. I thought I would share my happiness with Bill via a piece of tiramisu for dessert after dinner that evening.
Whilst dripping in phenomenal sensory overload, I sat in a safe haven. Hospital staff and restaurant workers, all familiar with chemo baldness. My hat-covered head joined by one other woman in the restaurant from the same planet. She too looked incredibly happy.
Staying strong,
Linda
I have realized that Wednesdays are good. I’m either coming out of the fog and ache or coming out of the Nadir period. Wednesday before Thanksgiving I felt tightness all around my incision areas and in my chest. As no one from my oncologist’s office would be in Friday when my chemo was scheduled, I decided to have it checked out Wednesday. I was convinced it was probably fluid collecting, which can happen after this type of surgery, and it would need to be drained. Plus, I mentally needed confirmation that it wasn’t an infection before another hit to my immune system.
The nurse practitioner did a thorough exam and decided it wasn’t fluid. My lungs and heart sounded good. She looked at me and rubbed my left shoulder, “I think you’ve pulled muscles. You’re hunched over protecting your left side. Have you lifted more than normal?” Not that I could think of. “Do you have small children?”
Oh, do they count? I hesitated as the events of the last week flashed before me. Liam wiped out running full-out on the school pavement 100 yards from the van. Yes, there was that 40-pound dead-weight lift from the ground that day and the carry to the van. And then there was the rainy day I boosted him in and out of the van. And the day Will was in tears, so I swept him off the floor onto my lap. “Yes, I have small children.” I felt guilty confessing. “Do you lift them?” The viper-mom in me raised her head and started flicking her tongue, wanting to defend and if necessary attack. I so wanted to reply with my own question in Tom Cruise’s “You-can’t-handle-the-truth!” voice, “Do you have children?” But I stopped. Tamed the viper. I knew her job was to take care of me. My job is to take care of them. And we would have to negotiate a happy medium, which may include a little Ibuprofen to calm the muscles.
My prescription was for my husband to rub my left shoulder. I so wanted to ask for a written prescription to give Bill, but this was the first time I had met this nurse practitioner. I wasn’t sure about her humor level.
At 11:30, happily diagnosed with pulled muscles that required no draining, I decided I could celebrate by having lunch in Boston. White blood cells should have bounced back, appetite was good, achiness was gone. I confirmed with an employee in the elevator that Antonio’s, just across the street from the hospital, was a good little Italian spot. I felt like a kid in a four-story toy store; it was only the 2nd time I’ve been in a restaurant since early October. When I opened the door, the smells of tomato and garlic wafted by me. A crooning Frank Sinatra ushered my ears to the table. Sitting in a restaurant, able to eat shrimp over ziti in a vodka sauce with a little kick. Dipping fantastic fresh Italian bread in olive oil. (Admittedly, I did Purell after feeling the stickiness of the oil bottle. A little germy. Gross.) Then, Spumoni for dessert. But I couldn’t stop there. I thought I would share my happiness with Bill via a piece of tiramisu for dessert after dinner that evening.
Whilst dripping in phenomenal sensory overload, I sat in a safe haven. Hospital staff and restaurant workers, all familiar with chemo baldness. My hat-covered head joined by one other woman in the restaurant from the same planet. She too looked incredibly happy.
Staying strong,
Linda
Black Dirt
(Original post date: December 7, 2009)
I miss good black dirt. Our house and the whole town, if not the state of Massachusetts, is built on ledge – which I define as big rocks. These make for spectacular cliffs but not great planting ground. Throughout town, big pieces of ledge have been blasted to make room for houses. A new house in our area sits six feet from a newly blasted rocky cliff. No backyard. Just a back rock.
We have rocky muckish colored dirt that’s filled with broken glass. Apparently our property was a dump for glass bottles years ago. We have a ridge of maple trees all around our property. The boys love climbing up the hill and hiding in the trees. But every spring before the leaves pop, I search the hill for glass brought to the surface by the spring thaw. Hours I spend picking up broken glass so it doesn’t end up in a little boy’s hand.
Two years ago I decided to create a small flower garden at the bottom of the ridge. I took a spade to my pathetic looking dirt and slowly turned it over. Revealing rocks and glass with every twist of the shovel. Occasionally striking a rock that would jar me to the core. Frequently murmuring, “This sucks.” After thirteen years at the same house in Illinois, I had an English country garden. It started as a hill in the backyard, and after mowing it for two seasons, I had a bigger vision. Instead of scalping it every time I mowed, I was going to plow it up. Mom and Dad gave me a tiller for my birthday and I put Bill to work, pushing the tiller and ripping up the sod. After I got the grass chunks killed off, I started planting. Anything I put in the ground grew in my sun-drenched rich soil. I kept a stone path through the flowers down the hill. When we left the house, the flowers were firmly established and more than waist-high. Glorious. And now, oh woe is me, I have four inches of mucky rock-filled, glass-filled, shade-filled pitiful dirt.
While I’m a little overwhelmed by my dirt and how to make it productive, my friend in town has created the most spectacular garden over the last fifteen years. Growing up in Michigan, I imagine she was used to good dirt as well, better than ledge anyway. Her garden was a paved drive when she bought her house. She had it jack-hammered out and then went about creating, encouraging and feeding the ground. The result is breathtaking. And she continuously nurtures her dirt, bringing in horse manure and collecting weekly droppings from a friend’s rabbit.
And as I bemoan my rock-filled earth, I’m having a vision of a clear Iowa cornfield ready for spring planting. And now a flashback: I know why there are no rocks in it. Growing up, Dad would pull a hay rack behind a tractor while Mom, Grandma Murphy, and us kids picked up rocks and chucked them on the rack. For years, freshly turned earth revealed new rocks that had to be removed before planting corn and beans.
So, I’m waiting for the boiling point when I just decide I need a flower garden. Deep down, I know where it’s going to be. We have a big barren piece of shady backyard. And for two or three years I’ve resisted seeding it. To me it needs to be landscaped. To Bill it needs grass. To me, I think it needs borders. Flower-filled borders. I believe we’ve been having a subconscious duel. I’m revving up the tiller and getting a lead on horse and rabbit poop. Ah, that will need to wait until spring; I don’t think my oncologist would want me playing in that right now.
Staying strong, but missing black dirt,
Linda
I miss good black dirt. Our house and the whole town, if not the state of Massachusetts, is built on ledge – which I define as big rocks. These make for spectacular cliffs but not great planting ground. Throughout town, big pieces of ledge have been blasted to make room for houses. A new house in our area sits six feet from a newly blasted rocky cliff. No backyard. Just a back rock.
We have rocky muckish colored dirt that’s filled with broken glass. Apparently our property was a dump for glass bottles years ago. We have a ridge of maple trees all around our property. The boys love climbing up the hill and hiding in the trees. But every spring before the leaves pop, I search the hill for glass brought to the surface by the spring thaw. Hours I spend picking up broken glass so it doesn’t end up in a little boy’s hand.
Two years ago I decided to create a small flower garden at the bottom of the ridge. I took a spade to my pathetic looking dirt and slowly turned it over. Revealing rocks and glass with every twist of the shovel. Occasionally striking a rock that would jar me to the core. Frequently murmuring, “This sucks.” After thirteen years at the same house in Illinois, I had an English country garden. It started as a hill in the backyard, and after mowing it for two seasons, I had a bigger vision. Instead of scalping it every time I mowed, I was going to plow it up. Mom and Dad gave me a tiller for my birthday and I put Bill to work, pushing the tiller and ripping up the sod. After I got the grass chunks killed off, I started planting. Anything I put in the ground grew in my sun-drenched rich soil. I kept a stone path through the flowers down the hill. When we left the house, the flowers were firmly established and more than waist-high. Glorious. And now, oh woe is me, I have four inches of mucky rock-filled, glass-filled, shade-filled pitiful dirt.
While I’m a little overwhelmed by my dirt and how to make it productive, my friend in town has created the most spectacular garden over the last fifteen years. Growing up in Michigan, I imagine she was used to good dirt as well, better than ledge anyway. Her garden was a paved drive when she bought her house. She had it jack-hammered out and then went about creating, encouraging and feeding the ground. The result is breathtaking. And she continuously nurtures her dirt, bringing in horse manure and collecting weekly droppings from a friend’s rabbit.
And as I bemoan my rock-filled earth, I’m having a vision of a clear Iowa cornfield ready for spring planting. And now a flashback: I know why there are no rocks in it. Growing up, Dad would pull a hay rack behind a tractor while Mom, Grandma Murphy, and us kids picked up rocks and chucked them on the rack. For years, freshly turned earth revealed new rocks that had to be removed before planting corn and beans.
So, I’m waiting for the boiling point when I just decide I need a flower garden. Deep down, I know where it’s going to be. We have a big barren piece of shady backyard. And for two or three years I’ve resisted seeding it. To me it needs to be landscaped. To Bill it needs grass. To me, I think it needs borders. Flower-filled borders. I believe we’ve been having a subconscious duel. I’m revving up the tiller and getting a lead on horse and rabbit poop. Ah, that will need to wait until spring; I don’t think my oncologist would want me playing in that right now.
Staying strong, but missing black dirt,
Linda
A Fowl Story
(Original post date: December 3, 2009)
“Play date” was not a part of my family’s vocabulary when I was a kid. The closest thing we ever had to a play date was "a visit" from my aunts and our cousins. And in late summer, with my cousins who also lived on a farm, that meant it was time to butcher chickens. My lack of interest in cooking whole fowl most likely stems from those butchering days. As my mom and my aunt quickly cut the heads off, they would let those flip-flapping bodies loose. And even without eyes, headless chickens can chase nine kids with incredible accuracy. The safest place to run was to the back of the pick-up truck. Barefooted, we flew across the gravel drive to clamber up the bumper and over the tail gate.
Once they were still, Mom brought out boiling water and filled five gallon buckets to dip them in so as to loosen the feathers. Then each of us kids had work to do: plucking. The soft feathers were easiest to pull out. The wings were the toughest. The little kids would pull the easy ones and then us older kids and our moms would have to clean-up what the 5-year-olds left on each chicken. And as we worked, those boy cousins would always try to whack us girls on the bare legs with a dead chicken. We choreographed our own chicken dance to avoid contact.
My aunt would oversee the plucking while mom built a fire in the 55 galloon fire barrel. After we plucked, my mom and my aunt would hold the naked chickens over the fire to singe off all the tiny pin feathers and hair. As younger kids, that ended our work and the “play date” could commence while Mom and my aunt went about cleaning and cutting up the chickens to freeze. The next play date would be at my aunt’s house to butcher her chickens. Coincidentally, at one of those get-togethers, one of those same boy cousins planted a big, dead bull snake on the doorstep of their house hoping his mom would step on it. However, my mom, carrying a big tray of chickens to the truck, walked out of the house and stepped on it with her bare feet. The tray blocked her view of the trap. My cousin was mortified when my mom stepped on it! That black thing all neatly coiled up was more the size of a small python than a Gartner snake.
The 24 chickens butchered that day would not even make a dent in Mom’s freezer space. I think a small cow would fit in each of her freezers. Every time I go home they seem to grow in enormity. There are three of them in the basement, referred to as the freezer on the west wall, the freezer on the south wall under the stairs and the freezer on the south wall against the west wall. Mom has a running catalog in her head as to what is in each freezer – all are nearly full.
Mom and Dad gave Bill and me a small deep freeze as a wedding gift. After a trip home to Mom and Dad’s, I think of my freezer as a baby offspring of theirs. The contents of our freezers point to the different path my life has taken. Away from the farm. Away from the meat locker. Mom and Dad rarely buy beef and pork at the store. They buy a pig from their neighbor and fill their freezer with beef from cattle they’ve raised. Their freezer is filled with neat white packages of meats processed at the locker, no per pound cost listed on each package. I feel like I have to pay for all my meat twice: once at the grocery store and again I get to see what it costs when it comes out of the freezer.
I can tell you one thing that I rarely see in Mom’s freezer… whole chickens and bone-in chicken parts. I’m guessing Mom got her fill of whole fowl too. I know exactly where my bag of individually frozen chicken breasts is and I bet Mom knows which freezer hers are in as well.
(Written on Thanksgiving Day as I think about that big bird in my fridge and hope that Bill will take on the role of head bird baker today.)
Little did I know…
:)
Staying strong,
Linda
“Play date” was not a part of my family’s vocabulary when I was a kid. The closest thing we ever had to a play date was "a visit" from my aunts and our cousins. And in late summer, with my cousins who also lived on a farm, that meant it was time to butcher chickens. My lack of interest in cooking whole fowl most likely stems from those butchering days. As my mom and my aunt quickly cut the heads off, they would let those flip-flapping bodies loose. And even without eyes, headless chickens can chase nine kids with incredible accuracy. The safest place to run was to the back of the pick-up truck. Barefooted, we flew across the gravel drive to clamber up the bumper and over the tail gate.
Once they were still, Mom brought out boiling water and filled five gallon buckets to dip them in so as to loosen the feathers. Then each of us kids had work to do: plucking. The soft feathers were easiest to pull out. The wings were the toughest. The little kids would pull the easy ones and then us older kids and our moms would have to clean-up what the 5-year-olds left on each chicken. And as we worked, those boy cousins would always try to whack us girls on the bare legs with a dead chicken. We choreographed our own chicken dance to avoid contact.
My aunt would oversee the plucking while mom built a fire in the 55 galloon fire barrel. After we plucked, my mom and my aunt would hold the naked chickens over the fire to singe off all the tiny pin feathers and hair. As younger kids, that ended our work and the “play date” could commence while Mom and my aunt went about cleaning and cutting up the chickens to freeze. The next play date would be at my aunt’s house to butcher her chickens. Coincidentally, at one of those get-togethers, one of those same boy cousins planted a big, dead bull snake on the doorstep of their house hoping his mom would step on it. However, my mom, carrying a big tray of chickens to the truck, walked out of the house and stepped on it with her bare feet. The tray blocked her view of the trap. My cousin was mortified when my mom stepped on it! That black thing all neatly coiled up was more the size of a small python than a Gartner snake.
The 24 chickens butchered that day would not even make a dent in Mom’s freezer space. I think a small cow would fit in each of her freezers. Every time I go home they seem to grow in enormity. There are three of them in the basement, referred to as the freezer on the west wall, the freezer on the south wall under the stairs and the freezer on the south wall against the west wall. Mom has a running catalog in her head as to what is in each freezer – all are nearly full.
Mom and Dad gave Bill and me a small deep freeze as a wedding gift. After a trip home to Mom and Dad’s, I think of my freezer as a baby offspring of theirs. The contents of our freezers point to the different path my life has taken. Away from the farm. Away from the meat locker. Mom and Dad rarely buy beef and pork at the store. They buy a pig from their neighbor and fill their freezer with beef from cattle they’ve raised. Their freezer is filled with neat white packages of meats processed at the locker, no per pound cost listed on each package. I feel like I have to pay for all my meat twice: once at the grocery store and again I get to see what it costs when it comes out of the freezer.
I can tell you one thing that I rarely see in Mom’s freezer… whole chickens and bone-in chicken parts. I’m guessing Mom got her fill of whole fowl too. I know exactly where my bag of individually frozen chicken breasts is and I bet Mom knows which freezer hers are in as well.
(Written on Thanksgiving Day as I think about that big bird in my fridge and hope that Bill will take on the role of head bird baker today.)
Little did I know…
:)
Staying strong,
Linda
Turkey and Fire
(Original post date: December 1, 2009)
In anticipation of our friends coming from NYC for Thanksgiving, I bought a fresh 15-pound turkey about 10 days before Thanksgiving. The “good until date” was November 28 – refrigerated or frozen. That seemed a long time even for a brined turkey to be in the fridge, but despite Mom’s suggestion that I freeze it, I left it in the fridge.
Around 1 p.m. on Thanksgiving Day, Bill – my designated bird man – cut open the plastic. “Does this smell, OK?” If Bill was asking the question, I should have known immediately that something was amiss. It did smell…. different. I looked up “brined turkey smell” on-line and discovered brining doesn’t affect the smell. “Call your Mom!” Bill fervently suggested. So I did. I’m not sure why: Voice goes through a phone line; voice and picture go through Skype. Nothing instantly transmits smell. But based on our description of the smell, or perhaps the quiver in my voice, Mom agreed: don’t risk it.
I flew out of the house at 1:10, leaving Bill with the foul bird and the smell that was turning my stomach. Our supermarket was closed, so I decided to go to the next town and check on that supermarket. But enroute, I passed our little grocery store in town – parking lot full with a big open sign! They had four or five 20+ pound Butterball turkeys in the fridge case, but as I poked at them I knew they weren’t completely thawed. Then a guy behind the counter said, “Whatcha lookin’ for?” I replied, “A turkey.” Amazingly, he said, “I have one fresh turkey left in the back.” He said it loud enough for other customers to clearly hear. So just in case I had competition I the crowd, I shouted, “I’ll take it!” A 20-pounder for four people. It had to go in the oven soon if we wanted to eat before 10 p.m. The store had no more aluminum roasting pans. I called Bill, “You need to wash the pan and preheat the oven.” His reply, “I just put the pan in the garbage with the turkey. I’ll go dig it out.” Poor guy. I was the lucky one traipsing down Main Street with a 20-pound turkey, a little more weight than I should be lifting. I got it in the van, quickly Purelled, and motored for home.
At 1:25 I wheeled into the house. Bill washed the new, fresh-smelling bird while I snipped fresh rosemary and washed fresh thyme. The herbs were supposed to be nicely chopped, worked into softened butter, and delicately placed under the skin. But Bill just gave the turkey a quick rub of butter and stuffed the whole herbs under the skin and into the hole; then we shoved the bird in the oven at 1:35. Ahhh.
We went about enjoying the afternoon, playing football and waiting for our friends to arrive. By the way, ask Bill who has the best spiral throw in the Tinkler household… Actually, it may pain him to admit it: Me! It’s obvious who grew up in cricket land and who grew up in football country.
At turkey reveal time and as Bill gently pulled the pan out of the oven, some of the juices overflowed into the bottom of the oven. The turkey safely landed intact on the counter. We were ready for the second shift of roasted veggies, stuffing, and popovers in the oven. But the oven was smoking from the little spill. Despite fans whirling and the kitchen door wide open, our eyes were watering and our throats were full of smoke.
Then flames appeared in the oven. Bill headed for the fire extinguisher; I turned the oven off; and our friends, well, amused or bewildered, I’m not sure, remained very calm. As Bill reached for the oven door, I suggested we leave it closed and not feed the fire with oxygen. Plus, I didn’t want to commit to buying a new stove so soon. And, how would we get the second shift baked after a chemical spray in the cooking bay? Looking back, the flames were not huge, but there shouldn’t be flames in the oven so at the time they were enormous! We patiently watched the 6-inch high wisps of fire burn off the fat as we took turns standing at the open door to get fresh air. Twenty minutes later the flames were gone and in went the accompaniments. Around 8 p.m. we sat down to a great Thanksgiving feast, including stuffing with homemade roasted chestnuts, which we roasted in the oven pre-fire.
And would you believe, there sat my wig AGAIN on the Dartingon vase???
Staying strong and thankful for good friends and for good humor,
Linda
In anticipation of our friends coming from NYC for Thanksgiving, I bought a fresh 15-pound turkey about 10 days before Thanksgiving. The “good until date” was November 28 – refrigerated or frozen. That seemed a long time even for a brined turkey to be in the fridge, but despite Mom’s suggestion that I freeze it, I left it in the fridge.
Around 1 p.m. on Thanksgiving Day, Bill – my designated bird man – cut open the plastic. “Does this smell, OK?” If Bill was asking the question, I should have known immediately that something was amiss. It did smell…. different. I looked up “brined turkey smell” on-line and discovered brining doesn’t affect the smell. “Call your Mom!” Bill fervently suggested. So I did. I’m not sure why: Voice goes through a phone line; voice and picture go through Skype. Nothing instantly transmits smell. But based on our description of the smell, or perhaps the quiver in my voice, Mom agreed: don’t risk it.
I flew out of the house at 1:10, leaving Bill with the foul bird and the smell that was turning my stomach. Our supermarket was closed, so I decided to go to the next town and check on that supermarket. But enroute, I passed our little grocery store in town – parking lot full with a big open sign! They had four or five 20+ pound Butterball turkeys in the fridge case, but as I poked at them I knew they weren’t completely thawed. Then a guy behind the counter said, “Whatcha lookin’ for?” I replied, “A turkey.” Amazingly, he said, “I have one fresh turkey left in the back.” He said it loud enough for other customers to clearly hear. So just in case I had competition I the crowd, I shouted, “I’ll take it!” A 20-pounder for four people. It had to go in the oven soon if we wanted to eat before 10 p.m. The store had no more aluminum roasting pans. I called Bill, “You need to wash the pan and preheat the oven.” His reply, “I just put the pan in the garbage with the turkey. I’ll go dig it out.” Poor guy. I was the lucky one traipsing down Main Street with a 20-pound turkey, a little more weight than I should be lifting. I got it in the van, quickly Purelled, and motored for home.
At 1:25 I wheeled into the house. Bill washed the new, fresh-smelling bird while I snipped fresh rosemary and washed fresh thyme. The herbs were supposed to be nicely chopped, worked into softened butter, and delicately placed under the skin. But Bill just gave the turkey a quick rub of butter and stuffed the whole herbs under the skin and into the hole; then we shoved the bird in the oven at 1:35. Ahhh.
We went about enjoying the afternoon, playing football and waiting for our friends to arrive. By the way, ask Bill who has the best spiral throw in the Tinkler household… Actually, it may pain him to admit it: Me! It’s obvious who grew up in cricket land and who grew up in football country.
At turkey reveal time and as Bill gently pulled the pan out of the oven, some of the juices overflowed into the bottom of the oven. The turkey safely landed intact on the counter. We were ready for the second shift of roasted veggies, stuffing, and popovers in the oven. But the oven was smoking from the little spill. Despite fans whirling and the kitchen door wide open, our eyes were watering and our throats were full of smoke.
Then flames appeared in the oven. Bill headed for the fire extinguisher; I turned the oven off; and our friends, well, amused or bewildered, I’m not sure, remained very calm. As Bill reached for the oven door, I suggested we leave it closed and not feed the fire with oxygen. Plus, I didn’t want to commit to buying a new stove so soon. And, how would we get the second shift baked after a chemical spray in the cooking bay? Looking back, the flames were not huge, but there shouldn’t be flames in the oven so at the time they were enormous! We patiently watched the 6-inch high wisps of fire burn off the fat as we took turns standing at the open door to get fresh air. Twenty minutes later the flames were gone and in went the accompaniments. Around 8 p.m. we sat down to a great Thanksgiving feast, including stuffing with homemade roasted chestnuts, which we roasted in the oven pre-fire.
And would you believe, there sat my wig AGAIN on the Dartingon vase???
Staying strong and thankful for good friends and for good humor,
Linda
The Layer Cake
Original post date: November 30, 2009)
Liam and I could easily become FoodTV junkies. Recently, while watching an early evening special on dessert making, I whispered to Liam, “Do you like to watch cooking or football better?” No reply, he was too engrossed in the egg breaking and flour pouring. After watching one cake being made, Liam said, “Mom, I need to make a real cake.” Even though it was 6 p.m., I relented. We hauled the KitchenAid up from the basement. We got all the ingredients out – “all” being three, including the cake mix. At 6:05 Bill zipped out to the store to get vegetable oil for us.
Liam eagerly completed each step. We broke our first egg together, and I used the biggest piece of shell to scoop out the little pieces. Then I gritted my teeth as he claimed, “I can do it myself now.” There were no shells in the last two eggs! We counted to 30 and watched while the ingredients slowly blended. Then we set the timer and watched the batter spin for two minutes. I turned it off and lifted the mixer attachment, and without hesitation, Liam leaned in and started licking the mixer attachment. His interest in the remaining tasks waned. As he finished his mixer lollipop, I poured half the batter into a round pan and half into a square pan. They were the first pans to surface from the back of the cupboard. I will never get invited to Ina Garten’s based on merits of my creation of a layer cake. With the circle precariously balanced on the square, it looked more like a squatty satellite on a stand than anything remotely edible.
But we still served it to our dinner guests the following night and no one complained. They were probably too awestruck after having had to eat dinner while gazing at my wig perched atop the Dartington vase. I didn’t realize until after they had left that I hadn’t put it upstairs. Thankfully, they are good, established friends.
To provide advance warning to our guests of the oddities they may find in our house, I need a little plate like Mom has had on her kitchen wall for years. It reads: “Come in, sit down, relax, converse. Our house doesn’t always look like this. Sometimes it’s even worse.”
Staying strong with a forkful of milk chocolate frosted chocolate cake,
Linda
Liam and I could easily become FoodTV junkies. Recently, while watching an early evening special on dessert making, I whispered to Liam, “Do you like to watch cooking or football better?” No reply, he was too engrossed in the egg breaking and flour pouring. After watching one cake being made, Liam said, “Mom, I need to make a real cake.” Even though it was 6 p.m., I relented. We hauled the KitchenAid up from the basement. We got all the ingredients out – “all” being three, including the cake mix. At 6:05 Bill zipped out to the store to get vegetable oil for us.
Liam eagerly completed each step. We broke our first egg together, and I used the biggest piece of shell to scoop out the little pieces. Then I gritted my teeth as he claimed, “I can do it myself now.” There were no shells in the last two eggs! We counted to 30 and watched while the ingredients slowly blended. Then we set the timer and watched the batter spin for two minutes. I turned it off and lifted the mixer attachment, and without hesitation, Liam leaned in and started licking the mixer attachment. His interest in the remaining tasks waned. As he finished his mixer lollipop, I poured half the batter into a round pan and half into a square pan. They were the first pans to surface from the back of the cupboard. I will never get invited to Ina Garten’s based on merits of my creation of a layer cake. With the circle precariously balanced on the square, it looked more like a squatty satellite on a stand than anything remotely edible.
But we still served it to our dinner guests the following night and no one complained. They were probably too awestruck after having had to eat dinner while gazing at my wig perched atop the Dartington vase. I didn’t realize until after they had left that I hadn’t put it upstairs. Thankfully, they are good, established friends.
To provide advance warning to our guests of the oddities they may find in our house, I need a little plate like Mom has had on her kitchen wall for years. It reads: “Come in, sit down, relax, converse. Our house doesn’t always look like this. Sometimes it’s even worse.”
Staying strong with a forkful of milk chocolate frosted chocolate cake,
Linda
Granddad's Pre-Sermon Prayer
Original post date: November 29, 2009)
Another letter arrived from Grandma Mills last week. I read only “O Lord” and knew it was Granddad’s voice on paper. In addition to his beautiful prayers, my gut says he had a knack for writing.
According to Grandma, this is “Granddad’s prayer he used when he gave the sermon in church once.”
I think it could apply to just about any time, any day, not just on a Sunday morning in a small Methodist church.
With an OK from Grandma, I am sharing Granddad’s voice.
“O Lord, grant that each one who has to do with me today may be happier for it.
Let it be given me each hour today what I shall say, and grant me the wisdom of a loving heart that I may say the right thing rightly.
Help me to enter into the minds of everyone who talks with me and keep me alive to the feelings of each one present.
Give me a quick eye for little kindnesses that I may be ready in doing them and gracious in receiving them.
Give me quick perceptions of the feelings and the needs of others, and make me eager hearted in helping them.
Amen.”
Amen.
Another letter arrived from Grandma Mills last week. I read only “O Lord” and knew it was Granddad’s voice on paper. In addition to his beautiful prayers, my gut says he had a knack for writing.
According to Grandma, this is “Granddad’s prayer he used when he gave the sermon in church once.”
I think it could apply to just about any time, any day, not just on a Sunday morning in a small Methodist church.
With an OK from Grandma, I am sharing Granddad’s voice.
“O Lord, grant that each one who has to do with me today may be happier for it.
Let it be given me each hour today what I shall say, and grant me the wisdom of a loving heart that I may say the right thing rightly.
Help me to enter into the minds of everyone who talks with me and keep me alive to the feelings of each one present.
Give me a quick eye for little kindnesses that I may be ready in doing them and gracious in receiving them.
Give me quick perceptions of the feelings and the needs of others, and make me eager hearted in helping them.
Amen.”
Amen.
Thursday, April 7, 2011
Halfway done!
(Original post date: November 27, 2009)
We just got home from MGH. I'm halfway through chemo! And I didn't have to stand on my head to get the port to work!
The next four sessions will be infusions of Taxol. I was told today that there is less likelihood of nausea with Taxol; no set nausea meds to take after the first infusion 12/11, only a boat load if I happen to experience nausea. Unsure of the side effects of Taxol, one friend on Taxol now said there was more achiness, but she's on her way to New York City tomorrow, so I don't think it has phased her to much.
We had a lovely Thanksgiving dinner, eventually. Watch for a longer story on Turkey and Fire. :) No damage, just a bit of excitement. It was made a true holiday by many. Our friends from New York City cooked and ate Thanksgiving dinner with us, complete with roasted chestnuts and the best stuffing ever. Friends near and far sent goodies and recipes for my friend Carol to make for us. Cranberry muffins, salad oil coffee cake, pumpkin muffins with cranberry & apple compote, banana chocolate chip muffns. Plus some English goodies to top it off, tucked around a Christmas cactus and a mum. And, we rounded out the week's meals with your gifts for "Fill the Freezer" with frozen food from Trader Joe's: a curry evening, lobster ravioli, pesto and tomato pizza, plus lots more goodies in the freezer. It felt like all of you were here.... and we cooked enough food that you easily could have been here and not gone hungry! Thank you!
Looking forward to a quiet weekend with my family.
Staying strong,
Linda
We just got home from MGH. I'm halfway through chemo! And I didn't have to stand on my head to get the port to work!
The next four sessions will be infusions of Taxol. I was told today that there is less likelihood of nausea with Taxol; no set nausea meds to take after the first infusion 12/11, only a boat load if I happen to experience nausea. Unsure of the side effects of Taxol, one friend on Taxol now said there was more achiness, but she's on her way to New York City tomorrow, so I don't think it has phased her to much.
We had a lovely Thanksgiving dinner, eventually. Watch for a longer story on Turkey and Fire. :) No damage, just a bit of excitement. It was made a true holiday by many. Our friends from New York City cooked and ate Thanksgiving dinner with us, complete with roasted chestnuts and the best stuffing ever. Friends near and far sent goodies and recipes for my friend Carol to make for us. Cranberry muffins, salad oil coffee cake, pumpkin muffins with cranberry & apple compote, banana chocolate chip muffns. Plus some English goodies to top it off, tucked around a Christmas cactus and a mum. And, we rounded out the week's meals with your gifts for "Fill the Freezer" with frozen food from Trader Joe's: a curry evening, lobster ravioli, pesto and tomato pizza, plus lots more goodies in the freezer. It felt like all of you were here.... and we cooked enough food that you easily could have been here and not gone hungry! Thank you!
Looking forward to a quiet weekend with my family.
Staying strong,
Linda
Rocket Fuel
(Original post date: November 23, 2009)
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
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
An MRI Girl
(Original post date: November 22, 2009)
“Why should I keep these breasts if my annual mammograms aren’t effective?” I had been doing everything right. My surgeon’s response: “You are an MRI girl.” And guess what, I didn’t know I was an MRI girl until my breast cancer surgeon told me. In fact, I have probably been an MRI girl my whole adult life.
I have fibrocystic breasts, which is pretty common. My jaw nearly hit the floor when I saw the film from my mammogram as my surgeon said, “The problem is your breast tissue and cancer both appear white.” Indeed, the entire film was white. “The radiologist made a good catch; you were lucky.” This she said as she pointed to a smallish starburst, similar to pinching your shirt and giving the material a twist. That’s all there was on the mammogram. So that day, at 43 years old and not yet fully diagnosed with Stage IIa invasive ductal carcinoma, with one cancerous lymph node, I learned that I am an MRI girl. That means, after chemo and radiation, my follow-ups will be alternating every six months between a mammogram and an MRI. Had I had an MRI earlier, had my preventative plan included an MRI on occasion, well, perhaps I wouldn’t be bald now.
The task force currently suggesting the screening age be moved from women 40 years old to 50 years old claim to be making this recommendation not on costs but on scientific research. I don’t completely understand the members’ rationale. Stress is mentioned. Are the task force’s opinions weighing the benefits of mammograms with the “false positives” picked up by mammograms, causing stress in women who are left for some times weeks with the uncertainty of what the blip on the screen really is? That uncertainty was the most difficult part of this whole process, undeniably so. But knowledge is power. In the end, knowledge doesn’t always come easily. The school of hard knocks. It still exists.
As an MRI girl, WITH MY BREAST TYPE, I have a complete lack of faith in mammograms. For me, they are archaic. They are effective screening mechanisms for many women and my oncologist reminds me that it did pick up the cancer but… I am an MRI girl. And because of that I’ve had five areas biopsied, I’ve had numerous ultrasounds, I’ve had two MRI’s, I’ve had a PET scan, I’ve had three surgeries, I’m having chemo, and I’ll have radiation. Here and now, I’m thankful for each and every one of these treatments. Here and now, I’m choosing not to lift the heavy curtain, not to share the physical details of any of these treatments. Should I, the task force would have even a shinier new definition of stress.
When new computers come out, we wait for the hype to settle and when that happens, the price decreases and even more people buy. The economics of breast cancer screening does not work that way. I believe there are two reasons it was never suggested that I have a screening MRI: The cost of the initial test and the likelihood of false positives, of seeing too much, which would result in more expensive tests and biopsies.
As for a sampling of costs associated with my treatment, my MRI’s were approximately $2,500 each and one 6 mg shot of Neulasta, the white blood cell booster, is $3,000. As for seeing too much, while uncomfortable, I’d rather have had five sites biopsied a year or two ago than be wearing a red cap on my bald head today at 3 a.m.
“Why should I keep these breasts if my annual mammograms aren’t effective?” I had been doing everything right. My surgeon’s response: “You are an MRI girl.” And guess what, I didn’t know I was an MRI girl until my breast cancer surgeon told me. In fact, I have probably been an MRI girl my whole adult life.
I have fibrocystic breasts, which is pretty common. My jaw nearly hit the floor when I saw the film from my mammogram as my surgeon said, “The problem is your breast tissue and cancer both appear white.” Indeed, the entire film was white. “The radiologist made a good catch; you were lucky.” This she said as she pointed to a smallish starburst, similar to pinching your shirt and giving the material a twist. That’s all there was on the mammogram. So that day, at 43 years old and not yet fully diagnosed with Stage IIa invasive ductal carcinoma, with one cancerous lymph node, I learned that I am an MRI girl. That means, after chemo and radiation, my follow-ups will be alternating every six months between a mammogram and an MRI. Had I had an MRI earlier, had my preventative plan included an MRI on occasion, well, perhaps I wouldn’t be bald now.
The task force currently suggesting the screening age be moved from women 40 years old to 50 years old claim to be making this recommendation not on costs but on scientific research. I don’t completely understand the members’ rationale. Stress is mentioned. Are the task force’s opinions weighing the benefits of mammograms with the “false positives” picked up by mammograms, causing stress in women who are left for some times weeks with the uncertainty of what the blip on the screen really is? That uncertainty was the most difficult part of this whole process, undeniably so. But knowledge is power. In the end, knowledge doesn’t always come easily. The school of hard knocks. It still exists.
As an MRI girl, WITH MY BREAST TYPE, I have a complete lack of faith in mammograms. For me, they are archaic. They are effective screening mechanisms for many women and my oncologist reminds me that it did pick up the cancer but… I am an MRI girl. And because of that I’ve had five areas biopsied, I’ve had numerous ultrasounds, I’ve had two MRI’s, I’ve had a PET scan, I’ve had three surgeries, I’m having chemo, and I’ll have radiation. Here and now, I’m thankful for each and every one of these treatments. Here and now, I’m choosing not to lift the heavy curtain, not to share the physical details of any of these treatments. Should I, the task force would have even a shinier new definition of stress.
When new computers come out, we wait for the hype to settle and when that happens, the price decreases and even more people buy. The economics of breast cancer screening does not work that way. I believe there are two reasons it was never suggested that I have a screening MRI: The cost of the initial test and the likelihood of false positives, of seeing too much, which would result in more expensive tests and biopsies.
As for a sampling of costs associated with my treatment, my MRI’s were approximately $2,500 each and one 6 mg shot of Neulasta, the white blood cell booster, is $3,000. As for seeing too much, while uncomfortable, I’d rather have had five sites biopsied a year or two ago than be wearing a red cap on my bald head today at 3 a.m.
Medical Expenses
(Original post date: November 20, 2009)
One goal for the day: To go through four inches of unopened bills in the medical file.
Progress: All have been opened and are now dispersed into nine different vendor piles.
The review: Many are from the summer. Operation prep, biopsies, metal clip placement to mark the tumors, the surgeon, three surgeries. I haven’t delved into the costs to see if they are accurate, nor have I really felt like reviewing the physical details.
Instead, my attention turns to another smaller, manageable one-service date affair. The expenses of September 18, 2009. The day of the seal.
There are two sets of billings, one from the hospital and one from the doctor. Knowing the details of the day, I find great humor in the billing descriptions.
From the hospital “ER Charge – Level 2” $220 *** Each showing of Nemo =$110 -- Plus there’s a slight discrepancy: we were Level 4 the day of the event.
From the hospital “Removal of foreign body” $200 *** The rock was removed with long-handled tweezers owned by the hospital. Foreign body? It was a home-grown rock.
From the doctor “Physician” $86 *** Diagnosis: “Liam, you have a rock in your nose.” Well-established before the trip.
From the doctor “Surgery” $357 *** 20-second operation of long-handled tweezers.
From the hospital “Service Charge” $6 *** Bubbles? Crayons? Purell? Probably Purell.
Nearly $900. I think a variety pack of crochet hooks would run less than $10.
The bottom line: What I already knew. I would be independently wealthy if paid for the services I provide.
:)
Linda
One goal for the day: To go through four inches of unopened bills in the medical file.
Progress: All have been opened and are now dispersed into nine different vendor piles.
The review: Many are from the summer. Operation prep, biopsies, metal clip placement to mark the tumors, the surgeon, three surgeries. I haven’t delved into the costs to see if they are accurate, nor have I really felt like reviewing the physical details.
Instead, my attention turns to another smaller, manageable one-service date affair. The expenses of September 18, 2009. The day of the seal.
There are two sets of billings, one from the hospital and one from the doctor. Knowing the details of the day, I find great humor in the billing descriptions.
From the hospital “ER Charge – Level 2” $220 *** Each showing of Nemo =$110 -- Plus there’s a slight discrepancy: we were Level 4 the day of the event.
From the hospital “Removal of foreign body” $200 *** The rock was removed with long-handled tweezers owned by the hospital. Foreign body? It was a home-grown rock.
From the doctor “Physician” $86 *** Diagnosis: “Liam, you have a rock in your nose.” Well-established before the trip.
From the doctor “Surgery” $357 *** 20-second operation of long-handled tweezers.
From the hospital “Service Charge” $6 *** Bubbles? Crayons? Purell? Probably Purell.
Nearly $900. I think a variety pack of crochet hooks would run less than $10.
The bottom line: What I already knew. I would be independently wealthy if paid for the services I provide.
:)
Linda
;'')
(Original post date: November 19, 2009 -- in response to friend's and family's support through commenting to my postings)
Last February, I reawakened a 25-year-old passion for writing and, in the last few months, I have found either straight-forward or round-about ways… big breath… to share what I write. While most of what I write is not in a nut shell, there are certainly times when I am left wordless.
I often read through the comments that some of you have left. They make me laugh; they make me think; they make me thankful. And some I can respond to and some I cannot. So this afternoon, I need to clear the air. You need to know that I read them all. You need to know that sometimes I stand up and walk away, speechless… wordless. You need to know that if there’s a lack of reply, my screen may be blurry, my keyboard may be wet, but I have a smile on my face.
Many times on this journey I have shed tears, but a minority of them have been over this crazy thing called cancer. In a world where the headlines are negative and where our knee-jerk reaction is sometimes cynical, I am left in awe: there is much kindness in the world. And that bowls me over regularly. More than breast cancer ever has.
Staying strong with occasional happy tears -> ;’’)
Linda
Last February, I reawakened a 25-year-old passion for writing and, in the last few months, I have found either straight-forward or round-about ways… big breath… to share what I write. While most of what I write is not in a nut shell, there are certainly times when I am left wordless.
I often read through the comments that some of you have left. They make me laugh; they make me think; they make me thankful. And some I can respond to and some I cannot. So this afternoon, I need to clear the air. You need to know that I read them all. You need to know that sometimes I stand up and walk away, speechless… wordless. You need to know that if there’s a lack of reply, my screen may be blurry, my keyboard may be wet, but I have a smile on my face.
Many times on this journey I have shed tears, but a minority of them have been over this crazy thing called cancer. In a world where the headlines are negative and where our knee-jerk reaction is sometimes cynical, I am left in awe: there is much kindness in the world. And that bowls me over regularly. More than breast cancer ever has.
Staying strong with occasional happy tears -> ;’’)
Linda
A Mish-Mash
(Original post date: November 18, 2009)
Some days I’m better at collecting words and typing them from old journal entries than writing new words. Today is one of those days.
September 26, 2009 (a mish-mash of words and thoughts)
Choice. There’s always a choice.
Deb’s corn bags are wonderful. A couple minutes in the microwave and they radiate heat to achy parts like magic. Deb makes these bags using field corn – perhaps imported to Massachusetts from Iowa? :)
The moment is the safest place to be, breathing in and out.
I told a friend I LOVE fall because of the change. She laughed at me, “It’s the same every year!” Aha, so it’s safe change.
Occasionally, I call Dad in the middle of the day… and he always answers his cell phone. Last week I caught him while he was feeding the cows in the timber. I got to hear the cows!! Of course, they were vocal because he had stopped mid-chore to talk to me, so the conversation didn’t last long. He was getting butted left, right and center. It was good to hear the cows. Going to the farm with the boys is ritualistic. We do a hunt for all the tractors, see if they have an orange triangle on the back, sit on the tractors with their uncle. Dad takes us in his pickup truck for a drive to the timber to see the cows. In the spring this meant looking for tiny clumps of fresh clean fur – baby calves. Spring break 2010 in Iowa? I want to kiss the black dirt and the dusty gravel.
End of journal entry.
Staying strong,
Linda
Some days I’m better at collecting words and typing them from old journal entries than writing new words. Today is one of those days.
September 26, 2009 (a mish-mash of words and thoughts)
Choice. There’s always a choice.
Deb’s corn bags are wonderful. A couple minutes in the microwave and they radiate heat to achy parts like magic. Deb makes these bags using field corn – perhaps imported to Massachusetts from Iowa? :)
The moment is the safest place to be, breathing in and out.
I told a friend I LOVE fall because of the change. She laughed at me, “It’s the same every year!” Aha, so it’s safe change.
Occasionally, I call Dad in the middle of the day… and he always answers his cell phone. Last week I caught him while he was feeding the cows in the timber. I got to hear the cows!! Of course, they were vocal because he had stopped mid-chore to talk to me, so the conversation didn’t last long. He was getting butted left, right and center. It was good to hear the cows. Going to the farm with the boys is ritualistic. We do a hunt for all the tractors, see if they have an orange triangle on the back, sit on the tractors with their uncle. Dad takes us in his pickup truck for a drive to the timber to see the cows. In the spring this meant looking for tiny clumps of fresh clean fur – baby calves. Spring break 2010 in Iowa? I want to kiss the black dirt and the dusty gravel.
End of journal entry.
Staying strong,
Linda
Frustration
(Original post date: November 17, 2009)
This is not my speed. I slept from 7 p.m. until 5:30 a.m. After ten hours of sleep, I am normally a power house. And I was for about four hours this morning. Then, poof. Energy gone, back to the same old Day 5 fog, ache and tiredness. After sleeping that long, I thought for sure I would be going all day. But, no. It was a quick adrenaline rush full of power. In a few short hours it left me shaky, and then wiped out. This must be “fatigue.”
I’m sitting in the basement amidst our new storage units in the guest bedroom. We bought a house with square rooms and little storage; we are not square people with a little bit of stuff. We carted lots of stuff from Chicago to Boston, and, four years later, we are still unpacking. This room is my chemo project. This morning I did manage to empty one box of games into my new storage unit. Every day I’m working in it a little bit so that by the end of chemo the basement will be organized. And like my three-year-old Liam, or perhaps more like my 89-year-old Grandma Murphy, “I’m doing it myself.” Whether moving three books to the shelves, ten games to a cupboard or one pencil to the newly found supply cabinet, my aim is to work on it throughout these chemo days until it’s full. It’s a clean plate just waiting for my touch, my design, my energy. Perhaps tomorrow I’ll have a bit more energy.
For now, it’s warm tea, a warm cap, warm corn bags, warm fleece blanket, perhaps a nap… and not a lot of patience for this pace.
Staying strong but feeling ornery,
Linda
This is not my speed. I slept from 7 p.m. until 5:30 a.m. After ten hours of sleep, I am normally a power house. And I was for about four hours this morning. Then, poof. Energy gone, back to the same old Day 5 fog, ache and tiredness. After sleeping that long, I thought for sure I would be going all day. But, no. It was a quick adrenaline rush full of power. In a few short hours it left me shaky, and then wiped out. This must be “fatigue.”
I’m sitting in the basement amidst our new storage units in the guest bedroom. We bought a house with square rooms and little storage; we are not square people with a little bit of stuff. We carted lots of stuff from Chicago to Boston, and, four years later, we are still unpacking. This room is my chemo project. This morning I did manage to empty one box of games into my new storage unit. Every day I’m working in it a little bit so that by the end of chemo the basement will be organized. And like my three-year-old Liam, or perhaps more like my 89-year-old Grandma Murphy, “I’m doing it myself.” Whether moving three books to the shelves, ten games to a cupboard or one pencil to the newly found supply cabinet, my aim is to work on it throughout these chemo days until it’s full. It’s a clean plate just waiting for my touch, my design, my energy. Perhaps tomorrow I’ll have a bit more energy.
For now, it’s warm tea, a warm cap, warm corn bags, warm fleece blanket, perhaps a nap… and not a lot of patience for this pace.
Staying strong but feeling ornery,
Linda
The Wig and the Real Hair
(Original post date: November 16, 2009)
I nearly did her in a week ago! Last Saturday I put my wig on in the morning and wore it all day. With fewer cactus needles, it’s much more comfortable and it keeps heat in -- although I prefer not wearing it in the house. Anyway, Liam and I started preparing the rice. He is all about cooking right now. Loves it! I put the rice on the stove, washed the asparagus—basically the normal supper time groove. Then it happened: I took the lid off the rice and my glasses fogged up. I sprung back away from the stove. The tenderness of the situation hitting me full force. I may very well have singed my $400 wig on the very first day I wore it for any length of time. I zipped to the bathroom. My bangs were intact. Whew!
My college friend and her daughter were here last week while Bill was working in China. The first night they arrived I put a casserole in the oven for dinner. I opened the oven door and it happened again. Whoosh! Hot steamy air heading straight for my hair! I leaned back to let the steam escape in front of me. Closing the door, I zipped to the bathroom again. My bangs were still intact. I went downstairs where our guests were unpacking. “Guys, I need to take my wig off to cook, and I want you to know that so you aren’t shocked to come upstairs and see me bald in the kitchen. OK?” So I did a private reveal and they were both OK with it.
A few nights ago I thought I should do a “check” with Will. We’ve started playing a game of “you ask me any two questions and I ask you any two questions.” They are usually questions of favorites, but I make it clear that any topic is fair game. The question I needed answered, “Will, do you like my wig or my bald head better?” His immediate reply, “Hmm, I like them both,” sounding a bit disappointed at the lack of complexity of the question. Whew! I know where Liam stands. Often when I have the wig on, he’ll point to it and say, “I want spiky hair!” We’ve talked about the fact that when it’s on my head it’s mine and only I can take it off. Finally after many checks with Bill, he says he doesn’t mind one way or another. I love him.
I had cupboards installed in the basement and it took a day to install them, so I went down in the morning and had a chat with the two guys, then said, “By the way I’m on chemo and I don’t always wear my wig in the house. So you will probably see me bald.” “No problem!”
A good friend stopped by one day and I answered the door wigless. She didn’t faint and seemed to feel comfortable. So... I have established my home as wig-free territory, at least until the snow flies. If you stop by, don’t be surprised if I answer the door as Baldy. I’m OK with it. But if you really aren’t, I understand completely. I would rather dress for your visit than not have your visit. :)
If you’re curious…
The wig is washable. If I wear it daily, I need to wash it once a month in cool water, then hang it on a wig stand to dry. As it dries, it bounces back into style. An easy shake and quick comb should bring it back to its original look.
I know where to place it because the front of the wig should be set the width of four fingers, laid horizontally, above my eyebrows. It’s amazing how accurate that is. By the way, if you are a true friend, you will tell me if something is a little askew. I would tell you if you had a bugger. That’s normal conversation in our house.
Most of the dark hair on my head is gone, but I still see and feel a lot of hair. What’s left is blonde – or gray from the week of expereementing. If I’m really this gray, I’m putting Katie, my hair dresser, on alert now to restore my “true” color in the spring the minute I’m released from chemo life and have put the wig in long-term storage. I’ve heard I may have to wait a while before going back to my color. The hair now is softer than the original full-head-of-hair crew cut of Halloween. A friend of mine said it feels like chick fuzz. And that’s what it feels like when I walk: The relative wind I create moves it. It reminds me of walking through of a roomful of cobwebs gently brushing my scalp. I get the same sensation on my legs, but that’s a different story.
Staying strong and not quite hairless,
Linda
I nearly did her in a week ago! Last Saturday I put my wig on in the morning and wore it all day. With fewer cactus needles, it’s much more comfortable and it keeps heat in -- although I prefer not wearing it in the house. Anyway, Liam and I started preparing the rice. He is all about cooking right now. Loves it! I put the rice on the stove, washed the asparagus—basically the normal supper time groove. Then it happened: I took the lid off the rice and my glasses fogged up. I sprung back away from the stove. The tenderness of the situation hitting me full force. I may very well have singed my $400 wig on the very first day I wore it for any length of time. I zipped to the bathroom. My bangs were intact. Whew!
My college friend and her daughter were here last week while Bill was working in China. The first night they arrived I put a casserole in the oven for dinner. I opened the oven door and it happened again. Whoosh! Hot steamy air heading straight for my hair! I leaned back to let the steam escape in front of me. Closing the door, I zipped to the bathroom again. My bangs were still intact. I went downstairs where our guests were unpacking. “Guys, I need to take my wig off to cook, and I want you to know that so you aren’t shocked to come upstairs and see me bald in the kitchen. OK?” So I did a private reveal and they were both OK with it.
A few nights ago I thought I should do a “check” with Will. We’ve started playing a game of “you ask me any two questions and I ask you any two questions.” They are usually questions of favorites, but I make it clear that any topic is fair game. The question I needed answered, “Will, do you like my wig or my bald head better?” His immediate reply, “Hmm, I like them both,” sounding a bit disappointed at the lack of complexity of the question. Whew! I know where Liam stands. Often when I have the wig on, he’ll point to it and say, “I want spiky hair!” We’ve talked about the fact that when it’s on my head it’s mine and only I can take it off. Finally after many checks with Bill, he says he doesn’t mind one way or another. I love him.
I had cupboards installed in the basement and it took a day to install them, so I went down in the morning and had a chat with the two guys, then said, “By the way I’m on chemo and I don’t always wear my wig in the house. So you will probably see me bald.” “No problem!”
A good friend stopped by one day and I answered the door wigless. She didn’t faint and seemed to feel comfortable. So... I have established my home as wig-free territory, at least until the snow flies. If you stop by, don’t be surprised if I answer the door as Baldy. I’m OK with it. But if you really aren’t, I understand completely. I would rather dress for your visit than not have your visit. :)
If you’re curious…
The wig is washable. If I wear it daily, I need to wash it once a month in cool water, then hang it on a wig stand to dry. As it dries, it bounces back into style. An easy shake and quick comb should bring it back to its original look.
I know where to place it because the front of the wig should be set the width of four fingers, laid horizontally, above my eyebrows. It’s amazing how accurate that is. By the way, if you are a true friend, you will tell me if something is a little askew. I would tell you if you had a bugger. That’s normal conversation in our house.
Most of the dark hair on my head is gone, but I still see and feel a lot of hair. What’s left is blonde – or gray from the week of expereementing. If I’m really this gray, I’m putting Katie, my hair dresser, on alert now to restore my “true” color in the spring the minute I’m released from chemo life and have put the wig in long-term storage. I’ve heard I may have to wait a while before going back to my color. The hair now is softer than the original full-head-of-hair crew cut of Halloween. A friend of mine said it feels like chick fuzz. And that’s what it feels like when I walk: The relative wind I create moves it. It reminds me of walking through of a roomful of cobwebs gently brushing my scalp. I get the same sensation on my legs, but that’s a different story.
Staying strong and not quite hairless,
Linda
3 down 5 to go!
(Original post date: November 13, 2009)
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
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
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