I am forty. Obviously, I was not looking forward to it but I was not afraid of it either. Mostly, I just wanted to be able to celebrate it the way I planned. My life nicely humming along the trajectory I mentally plotted. So there was some disappointment to work through in advance.
It turned out to be a beautiful day. Jim can throw a party. Perfect weather, great food, beautiful setting, music, friends, family, bubbly, beers. Kids tumbling about in the alley; parents relaxing in the back yard. A lazy, luxurious day. And I was spoiled by your time, gifts and kindnesses. I love it, thank you.
Because cancer and a big birthday aren't enough excitement, we welcomed our new Au pair, Zaira, on Saturday. She is getting situated and acquainted with our family. Our house feels a bit like a boarding house. Dani is sleeping on the sofa. Zaira is in her room. Mom stayed last night on another sofa. Plus the basement tenants. Busy house.
The kitchen at mealtimes is a hot mess. This morning Jim retreated observing there were too many women in the kitchen. Then we blew a fuse. And we had to get into the basement apartment to access the fuse box. All while we were doing the breakfast, pack lunch, get out the door dance with two parents, two kids, two Au pairs and one mother (in-law) in our galley kitchen. Welcome to our crazy family, oh by the way, my hair style is totally different today because I wear a wig, have a good day, Zaira!
Today was almost a no treatment day. We got there early. Bloodwork done easily. First patient at the infusion center. After several others went back before me, I learned my blood counts were too low. The good doctor ordered a manual count to see if I could proceed. A ninety minute wait that we filled running errands.
We got the go ahead. The caveat is the need for three shots for the three days following treatment for these last four cycles (three to go). This is when everything I'm juggling seems like a bit too much.
The news about the blood count was really tough news. I want to work the plan. I want to worry about wrinkles and over the hill jokes. I want to coast through the rest of the chemo and into the break before surgery.
Last week we canceled our summer vacation for radiation. Today we canceled the first night of our two night get away this weekend for the shot appointment.
I wish I could articulate how I feel. I guess disappointed. Come on old girl. Keep up. I just want to crisply accomplish the steps that maximize my odds for cure. In an attempt to have some mind control over the randomness of this disease and diagnosis I'd like to march along, check the boxes, accomplish the milestones. But this disease and the chemo treatment are big, clumsy oafs. The precision waits for the surgery and in the meantime we duke it out. Chemo, my twisted friend, my arbitrary but strongest ally. Killing the cancer cells and diminishing my ability to fight cancer. She is hard to love, that one.
I'm reading The Goldfinch which is based on the changed life trajectory of a young boy whose Mom died unexpectedly when he was 13. It is excellent but it is a haunting read for me these days.
Birthday week. Ninth treatment week. Wizards playoffs. New Au pair. Almost May. Almost summer. Almost there.
Tuesday, April 29, 2014
Tuesday, April 22, 2014
Working 9 to 5
Ohh. It was a long one. Technology improvements, implementation issues. Just like a day on the job. I could consult for them. Today was the first day with new IV pumps. Nurses were well trained and ready. The pharmacy, not so much. Patients were waiting up to three hours for the chemo drugs from the pharmacy because the new pumps required new tubing and for whatever reason that increased the wait time to interminable.
We arrived at Georgetown for a radiation consult at 9. It was a good appointment. An odd observation. The waiting room was full of wildlife photographs. I thought the first one I saw was nice - a distraction. Then I realized there were tight groupings of four - four lions, four elephants, four polar bears everywhere. It was glamour shots for lions and tigers. Odd.
Downstairs by 10:30. Worked my infusion "shift" until 5. Long day. On the way home, Jim asked if I wanted to stop at the grocery store with him. That's funny.
What else? The chemo nurse who was diagnosed with and treated for breast cancer last year was my nurse today. I've had her a few times. Some times she doesn't want to talk to me (patients) about it. Sometimes she does. Today, we talked surgery, reconstruction and tattoos. A really nice voice to have in the mix for me.
I've never had the urge to run my hands through another person's hair before but today I was mesmerized by her hair. She completed chemo last fall. It is full, lush and pretty. The white is gone. The curl has started to straighten out. It's about 3 inches. Six months. I admit I was hoping I'd have hair two days after chemo but it was validating to see a six month post chemo sneak peak. I didn't cross the line with my nurse, but I did tell her it looked great.
Healing help arrived today: chocolates and crystals. Love it.
Eight treatments down. Four to go. I can see the finish line.
We arrived at Georgetown for a radiation consult at 9. It was a good appointment. An odd observation. The waiting room was full of wildlife photographs. I thought the first one I saw was nice - a distraction. Then I realized there were tight groupings of four - four lions, four elephants, four polar bears everywhere. It was glamour shots for lions and tigers. Odd.
Downstairs by 10:30. Worked my infusion "shift" until 5. Long day. On the way home, Jim asked if I wanted to stop at the grocery store with him. That's funny.
What else? The chemo nurse who was diagnosed with and treated for breast cancer last year was my nurse today. I've had her a few times. Some times she doesn't want to talk to me (patients) about it. Sometimes she does. Today, we talked surgery, reconstruction and tattoos. A really nice voice to have in the mix for me.
I've never had the urge to run my hands through another person's hair before but today I was mesmerized by her hair. She completed chemo last fall. It is full, lush and pretty. The white is gone. The curl has started to straighten out. It's about 3 inches. Six months. I admit I was hoping I'd have hair two days after chemo but it was validating to see a six month post chemo sneak peak. I didn't cross the line with my nurse, but I did tell her it looked great.
Healing help arrived today: chocolates and crystals. Love it.
Eight treatments down. Four to go. I can see the finish line.
Monday, April 21, 2014
The old me
Easter was sunny and slow. Coffees, egg hunts, Easter baskets (yes, with candy) and brunch with the Kowats. Miles is a magical, wondering, wide-eyed age. Where does the Easter bunny live the rest of the time? Can the Easter bunny come again tonight? ... He also had the good fortune of going to the White House Easter Egg Roll today and threw his egg rather than rolling it. At a person. Ah, four year olds.
Easter was lost on Ian. Except for the meals, which he enjoyed with his usual enthusiasm. He is nine months. His dinner tonight was ham, cooked carrots, macaroni and cheese with strawberries for dessert. Talk about zeal.
Two things to note on the cancer front. First, I've noticed a slight shift in my thinking. My fear of death and sense that I have to confront and prepare for it has been replaced with a working assumption that I will live. This is not a big statement. It is not defiant; it is not triumphant. Just a quiet shift back to a former default. I wish I could claim a mental victory. But truthfully, I think it is as much mental fatigue. Or laziness. Or I am just forgetting that I should worry about everything. Regardless, my private burden I carry since diagnosis, my heartbreak for my three boys, has lifted. Some days it's not even there.
Second, I've had another radical shift in my thinking. I asked Jim the other day if my bald head was cute enough to sport bare. From the drama and trauma of the hair loss to is it cute enough? That is some mental mileage. Jim's response was prudent. He reminded me that, while cute, it would be arresting for others and I would probably be uncomfortable with their response to me. He is right. But look at me. What is it? Ninety days to change my reflection from chemo to Kelly.
These shifts help. They stabilize me. They make me mentally and physically familiar to myself. I recognize the old me. Or just the me.
House of cards tonight. Treatment tomorrow.
Easter was lost on Ian. Except for the meals, which he enjoyed with his usual enthusiasm. He is nine months. His dinner tonight was ham, cooked carrots, macaroni and cheese with strawberries for dessert. Talk about zeal.
Two things to note on the cancer front. First, I've noticed a slight shift in my thinking. My fear of death and sense that I have to confront and prepare for it has been replaced with a working assumption that I will live. This is not a big statement. It is not defiant; it is not triumphant. Just a quiet shift back to a former default. I wish I could claim a mental victory. But truthfully, I think it is as much mental fatigue. Or laziness. Or I am just forgetting that I should worry about everything. Regardless, my private burden I carry since diagnosis, my heartbreak for my three boys, has lifted. Some days it's not even there.
Second, I've had another radical shift in my thinking. I asked Jim the other day if my bald head was cute enough to sport bare. From the drama and trauma of the hair loss to is it cute enough? That is some mental mileage. Jim's response was prudent. He reminded me that, while cute, it would be arresting for others and I would probably be uncomfortable with their response to me. He is right. But look at me. What is it? Ninety days to change my reflection from chemo to Kelly.
These shifts help. They stabilize me. They make me mentally and physically familiar to myself. I recognize the old me. Or just the me.
House of cards tonight. Treatment tomorrow.
Tuesday, April 15, 2014
Carry on, my friend
Today, gratitude. It is important for me to cultivate it - it helps me stave off any encroaching bitterness or anger. I forget it some days, but I am grateful for much. Selfishly, I am grateful to be making it through treatment without material complications. Not too sick, not too fatigued, not too many of the unpleasant side effects. And the list of unpleasant is long. Unfortunately, today we did have our first setback. My counts were low so my dose was lowered with the goal of protecting (not delaying) the final carbo session. The good doctor tried to reassure me it was fine. My original dose was quite robust and such. I don't know the medical side of it, but I was disappointed not to stick with the plan - particularly as I have a sense that the original plan was the one that maximized my odds. I am actually not sure the math works in that linear of a fashion, but it was my first bad news since I started chemo. Fucking cancer - such an attention junky. Back to the gratitude.
There is a quiet and beautiful thing I observe in the infusion center when we go for treatment. We often sit in the waiting room for a good bit of time. I watch people come in, sign in and sit quietly and wait patiently. For long amounts of time. Amounts of time that wouldn't really be tolerated other places. Eventually folks are called back. They stand, stretch, carry coolers and bags of reading material back into the small campsites for chemo. Rarely does someone come alone. I see friends and family, but mostly I see a whole lot of married couples. A whole lot of married couples doing the hard work of marriage.
They are mostly older couples who appear to have been married for decades. But there are a smattering of new couples like us. Others, who I expect, like us, shared vows earnestly, purposefully, and as knowingly as one could at the time. Others, like us, who probably imagined our commitment to look more like the 60, 70 and 80 year old duos battling cancer.
Regardless, here we sit and I see this beautiful sequence play out across the waiting room a dozen times, a dozen couples, every Tuesday. Jim, like the others, sits quietly and waits patiently. When I'm called, he stands, stretches, carries a cooler with snacks, and a backpack with diversions and fulfills a vow to love and cherish for better or for worse. A difficult thing done well. Thank you, Jimmy.
I am also grateful that we really have stabilized. Amazing what you can adjust to in life. I am less raw with grief. I have less to say (sorry - never much for words). Our pressing daily concerns are more trivial. Monday night date nights are only occasional. We are quietly heads down focused on the rest of chemo, then surgery, then radiation. I bet Miles doesn't even remember I'm sick. We usually have groceries, pay the bills on time and have time to exhale. I mean, we went dancing on Saturday night. Pretty good for a stage three cancer patient in the middle of chemo. Pat, pat. Of course, we were still home, exhausted and in bed by 10:30. Age or cancer? Let's pretend it was cancer.
Spring is still more difficult than we expected. We are stable, but not exactly cheery. And this time of year in Washington is all cheer. And roof deck dining. And spring break travel. And freshness. We are anything but fresh. But, the gratitude, Kelly...
I remain in your debt. I receive a package every treatment day from an Arlington girlfriend on temporary loan to Massachusetts. I get a joke every Tuesday for treatment from an AOL girlfriend on apparently permanent loan to San Francisco. Two other AOL girlfriends provided private yoga classes. Long-distance friends from Northwestern formed a supper club for us. Sounds like Jim will be wearing a tie to dinner. The list is long: spring pop of color flowers from a coworker; a necklace from Mom's neighbor; warm hats from Arlington, San Diego and Chicago, meals, meals, cards, notes, wellness texts. Thank you.
Today was the intense treatment. "Intense treatment, intense healing" says one wise one. And I close with another line that resonated from a recent card. I was instructed by a fellow survivor to "carry on, my friend." I liked it. It made the job ahead seem small. Manageable. Just carry on. Who can't do that? Thanks for reminding me I can, my friend.
There is a quiet and beautiful thing I observe in the infusion center when we go for treatment. We often sit in the waiting room for a good bit of time. I watch people come in, sign in and sit quietly and wait patiently. For long amounts of time. Amounts of time that wouldn't really be tolerated other places. Eventually folks are called back. They stand, stretch, carry coolers and bags of reading material back into the small campsites for chemo. Rarely does someone come alone. I see friends and family, but mostly I see a whole lot of married couples. A whole lot of married couples doing the hard work of marriage.
They are mostly older couples who appear to have been married for decades. But there are a smattering of new couples like us. Others, who I expect, like us, shared vows earnestly, purposefully, and as knowingly as one could at the time. Others, like us, who probably imagined our commitment to look more like the 60, 70 and 80 year old duos battling cancer.
Regardless, here we sit and I see this beautiful sequence play out across the waiting room a dozen times, a dozen couples, every Tuesday. Jim, like the others, sits quietly and waits patiently. When I'm called, he stands, stretches, carries a cooler with snacks, and a backpack with diversions and fulfills a vow to love and cherish for better or for worse. A difficult thing done well. Thank you, Jimmy.
I am also grateful that we really have stabilized. Amazing what you can adjust to in life. I am less raw with grief. I have less to say (sorry - never much for words). Our pressing daily concerns are more trivial. Monday night date nights are only occasional. We are quietly heads down focused on the rest of chemo, then surgery, then radiation. I bet Miles doesn't even remember I'm sick. We usually have groceries, pay the bills on time and have time to exhale. I mean, we went dancing on Saturday night. Pretty good for a stage three cancer patient in the middle of chemo. Pat, pat. Of course, we were still home, exhausted and in bed by 10:30. Age or cancer? Let's pretend it was cancer.
Spring is still more difficult than we expected. We are stable, but not exactly cheery. And this time of year in Washington is all cheer. And roof deck dining. And spring break travel. And freshness. We are anything but fresh. But, the gratitude, Kelly...
I remain in your debt. I receive a package every treatment day from an Arlington girlfriend on temporary loan to Massachusetts. I get a joke every Tuesday for treatment from an AOL girlfriend on apparently permanent loan to San Francisco. Two other AOL girlfriends provided private yoga classes. Long-distance friends from Northwestern formed a supper club for us. Sounds like Jim will be wearing a tie to dinner. The list is long: spring pop of color flowers from a coworker; a necklace from Mom's neighbor; warm hats from Arlington, San Diego and Chicago, meals, meals, cards, notes, wellness texts. Thank you.
Today was the intense treatment. "Intense treatment, intense healing" says one wise one. And I close with another line that resonated from a recent card. I was instructed by a fellow survivor to "carry on, my friend." I liked it. It made the job ahead seem small. Manageable. Just carry on. Who can't do that? Thanks for reminding me I can, my friend.
Tuesday, April 1, 2014
French fries and hot dogs
It's a grab bag today.
Treatment. Third round without a doctors appointment first. This continues to challenge the limits of my ability to tolerate administrative incompetence. Last time I didn't have enough bloodwork done. One hour delay, don't pass go. Today, I had the wrong bloodwork done. Arrived at 9:00. Left at 2:30. I'd like to update my DMV analogy to navigating a DMV and not speaking the language. You just cannot suss out the path out of the maze. Because there isn't one.
Great American Traditions. But first New York. I am reminded of a favorite correction a friend makes. A trip with family is a family trip not a vacation. New York was a family trip. Great moments, great memories. Not particularly relaxing. Obviously, no mother (in her right mind) would think a train idea with two kids to New York was an especially good idea. At one point Jim and I were traveling together both ways. The plans evolved and then I was solo parenting both ways. Plus the cumulative fatigue from the chemo. Plus the harder treatment last week.
A friend described the weekend as bat shit crazy. It was and it was also fun. And Miles loved it. The highlights for me include lots of walking through the city and Central Park, lattes and a stolen quiet hour with Jim while both boys slept in stroller and ergo, reading the NY Times at the pool while Jim and Miles swam and Ian slept, and Ian's first swim. Jim and I joked....too bad he doesn't like the water... Miles' highlights include the hotel room (he liked the telephone, the bed, and I swear this is a quote "where the bathroom was located"), a Central Park (purple) horse carriage ride and ice cream. I speculate but Ian's highlights include napping on mom in the ergo, swimming and all the meals. Jim, he is easy. He loves New York and loved showing it off to Miles.
So, a good, but you are crazy, gurl, weekend. We (Miles, Ian and I) train home in the rain on Saturday afternoon. I lug Miles in stroller, Ian in pack, and luggage off train, up to parking lot and load the car. It's rainy in Washington. Which just means that for some reason there is traffic and gridlock everywhere. After twenty minutes and little progress, I replan my route and told Miles we were getting French fries on the way home. Miles worried because his shoes were off. I proudly introduced him to two great American traditions. McDonalds and a drive thru. One little white paper bag of fries later ("they're so long, Mommy), he was very impressed with his Mom. I was impressed with how delicious and satisfying those fries were. At least I can say to Jim (who will, when he reads this blog and learns of this, be horrified) our children have never set foot in a McDonalds. All delicious indulgences in moderation and by my count a rainy Saturday afternoon trip through a McDonalds drive through falls into that category.
Big, hot breathed dogs. How to make this connection? By Sunday, I was losing my mind a bit after four days of juggling my kids (stay at homers - IMO working and juggling has got to be easier:)). Boozy brunch, play date, pedicure and another play date and dinner later, my balance was restored. These friends of ours are like man's best friend. They are strong, steady, loyal and loving. It's like when you are sitting on the sofa and you happen to glance down, your big hot breathed dog is already looking up and saying "Yes, let's." Mans best and breast friends - I mean, those are some compliments. All this is before I came home from treatment today to a spring garden delivered by the Mt P crew. Dogs, all of y'all.
Treatment. Third round without a doctors appointment first. This continues to challenge the limits of my ability to tolerate administrative incompetence. Last time I didn't have enough bloodwork done. One hour delay, don't pass go. Today, I had the wrong bloodwork done. Arrived at 9:00. Left at 2:30. I'd like to update my DMV analogy to navigating a DMV and not speaking the language. You just cannot suss out the path out of the maze. Because there isn't one.
Great American Traditions. But first New York. I am reminded of a favorite correction a friend makes. A trip with family is a family trip not a vacation. New York was a family trip. Great moments, great memories. Not particularly relaxing. Obviously, no mother (in her right mind) would think a train idea with two kids to New York was an especially good idea. At one point Jim and I were traveling together both ways. The plans evolved and then I was solo parenting both ways. Plus the cumulative fatigue from the chemo. Plus the harder treatment last week.
A friend described the weekend as bat shit crazy. It was and it was also fun. And Miles loved it. The highlights for me include lots of walking through the city and Central Park, lattes and a stolen quiet hour with Jim while both boys slept in stroller and ergo, reading the NY Times at the pool while Jim and Miles swam and Ian slept, and Ian's first swim. Jim and I joked....too bad he doesn't like the water... Miles' highlights include the hotel room (he liked the telephone, the bed, and I swear this is a quote "where the bathroom was located"), a Central Park (purple) horse carriage ride and ice cream. I speculate but Ian's highlights include napping on mom in the ergo, swimming and all the meals. Jim, he is easy. He loves New York and loved showing it off to Miles.
So, a good, but you are crazy, gurl, weekend. We (Miles, Ian and I) train home in the rain on Saturday afternoon. I lug Miles in stroller, Ian in pack, and luggage off train, up to parking lot and load the car. It's rainy in Washington. Which just means that for some reason there is traffic and gridlock everywhere. After twenty minutes and little progress, I replan my route and told Miles we were getting French fries on the way home. Miles worried because his shoes were off. I proudly introduced him to two great American traditions. McDonalds and a drive thru. One little white paper bag of fries later ("they're so long, Mommy), he was very impressed with his Mom. I was impressed with how delicious and satisfying those fries were. At least I can say to Jim (who will, when he reads this blog and learns of this, be horrified) our children have never set foot in a McDonalds. All delicious indulgences in moderation and by my count a rainy Saturday afternoon trip through a McDonalds drive through falls into that category.
Big, hot breathed dogs. How to make this connection? By Sunday, I was losing my mind a bit after four days of juggling my kids (stay at homers - IMO working and juggling has got to be easier:)). Boozy brunch, play date, pedicure and another play date and dinner later, my balance was restored. These friends of ours are like man's best friend. They are strong, steady, loyal and loving. It's like when you are sitting on the sofa and you happen to glance down, your big hot breathed dog is already looking up and saying "Yes, let's." Mans best and breast friends - I mean, those are some compliments. All this is before I came home from treatment today to a spring garden delivered by the Mt P crew. Dogs, all of y'all.
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