(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
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