Where to start. There was a rule in my house growing up - if you have nothing nice to say, don't say anything at all.
What's the news? I've been busy at work and getting by. I have mostly kept to myself. What can I say, cancer is a lonely path.
It seems I should be happy to be done with the first portion of treatment. But all the sudden twelve more cycles doesn't sound so great. Even if it is "easier" it is still chemo. And three months.
What's the good news? Ian is sleeping is his bed. Whole nights and naps. Sunday night was the first time since we moved in May that there was a post bedtime, all quiet in the household. It was like we got two hours added to our day.
What else good? Jim's back from five long days in New York. Monday night, date night, we spent with our friend JT and about 17,000 swooning ladies.
Jim's birthday approaches. (The Oscars, too.).
Today is the first day fifteen without treatment. It might be the threshold for good living beyond the chemo eclipse. I have good energy. My humor is coming back. I remember this person. So we will reminisce for a few minutes and then start to prepare for next Tuesday.
Tuesday, February 25, 2014
Sunday, February 16, 2014
Lazy Sunday
I'm enjoying a quiet and a bit forgotten tradition of a weekend day spent at home puttering without an agenda. Or Ian and I are. At one point, we were going to grocery shop and cook and accomplish things. We've given that up.
Jim and Miles were ambitious enough to go skiing. We agreed that a few hours in the car and a few hours in a lodge were not ideal for Ian and me, so we opted for a day at home. But I haven't spent a full day with either one or both of the boys since we got this news, much less started treatment.
I realize a day with one child doesn't sound taxing, but my energy levels are only remarkable for their absence.
I should note that although this diagnosis has afforded me more time at home, its not exactly quality time. I see a lot of the boys, but I spend a fair amount of it laying down, feeding bottles, reading books and then turning the boys back over to Jim, Mom or Dani.
Miles has learned this new pattern. The other day he wanted to play pirates and offered to lay a blanket on the floor for me so I could rest while we played. I look forward to realizing one day that he has unlearned this as quickly as he quietly learned it.
Anyway, I have also had more time with Ian, but not large chunks of uninterrupted time. It turns out seven months is the perfect age for a lazy Sunday. Neither of us are particularly mobile. We have a similar eat, snack, nap, lay around and play schedule. He enjoys the Olympics.
For the record, so has Miles. Miles and I were up early for the Team USA v. Team Russia game at 7:30 on Saturday morning. Miles, an Ovechkin loyalist, was not impressed with Oshie or the outcome.
As for today, we are also working on sleep training. Both ambitious and unpleasant. Ian has indicated he would prefer to continue to sleep in his car seat for all naps and nighttime sleeps. Jim and I have a couple of issues with that. The obvious - between Ian and Miles - we have a lot of company, crying and talking throughout the nights. Less obvious unless you've seen him recently - Ian is rather huge and can spin and flip his way out of the car seat unless buckled in. It is bad enough to have a seven month old sleeping in a car seat every night, but it really seems wrong when you have to buckle him into to bed. So, my lazy Sunday does have some work involved too.
What else? I'm looking forward to two weeks without treatment. I'm looking forward to some energy. I'm hopeful the next cycle of chemo will get me closer to who I was. As I complained to Jim in a steriod-rage the other night, I haven't felt like myself for one minute since mid-day December 9. That is a long time to not feel like yourself.
Jim tells me he is proud of how I'm handling this. That I'm faking it well. That no one at our valentine's lunch would ever know what I was going through. This is a consolation because I am a private person. But it is a small consolation.
Sleep training is a mixed bag. We've had success. Two very short naps in his crib. None in his car seat. But he has also only managed to fall asleep face down into his lovey. Which of course requires that I spend his nap time ear pressed to monitor and peering nervously into his room. At least I don't have to fake this part.
Jim and Miles were ambitious enough to go skiing. We agreed that a few hours in the car and a few hours in a lodge were not ideal for Ian and me, so we opted for a day at home. But I haven't spent a full day with either one or both of the boys since we got this news, much less started treatment.
I realize a day with one child doesn't sound taxing, but my energy levels are only remarkable for their absence.
I should note that although this diagnosis has afforded me more time at home, its not exactly quality time. I see a lot of the boys, but I spend a fair amount of it laying down, feeding bottles, reading books and then turning the boys back over to Jim, Mom or Dani.
Miles has learned this new pattern. The other day he wanted to play pirates and offered to lay a blanket on the floor for me so I could rest while we played. I look forward to realizing one day that he has unlearned this as quickly as he quietly learned it.
Anyway, I have also had more time with Ian, but not large chunks of uninterrupted time. It turns out seven months is the perfect age for a lazy Sunday. Neither of us are particularly mobile. We have a similar eat, snack, nap, lay around and play schedule. He enjoys the Olympics.
For the record, so has Miles. Miles and I were up early for the Team USA v. Team Russia game at 7:30 on Saturday morning. Miles, an Ovechkin loyalist, was not impressed with Oshie or the outcome.
As for today, we are also working on sleep training. Both ambitious and unpleasant. Ian has indicated he would prefer to continue to sleep in his car seat for all naps and nighttime sleeps. Jim and I have a couple of issues with that. The obvious - between Ian and Miles - we have a lot of company, crying and talking throughout the nights. Less obvious unless you've seen him recently - Ian is rather huge and can spin and flip his way out of the car seat unless buckled in. It is bad enough to have a seven month old sleeping in a car seat every night, but it really seems wrong when you have to buckle him into to bed. So, my lazy Sunday does have some work involved too.
What else? I'm looking forward to two weeks without treatment. I'm looking forward to some energy. I'm hopeful the next cycle of chemo will get me closer to who I was. As I complained to Jim in a steriod-rage the other night, I haven't felt like myself for one minute since mid-day December 9. That is a long time to not feel like yourself.
Jim tells me he is proud of how I'm handling this. That I'm faking it well. That no one at our valentine's lunch would ever know what I was going through. This is a consolation because I am a private person. But it is a small consolation.
Sleep training is a mixed bag. We've had success. Two very short naps in his crib. None in his car seat. But he has also only managed to fall asleep face down into his lovey. Which of course requires that I spend his nap time ear pressed to monitor and peering nervously into his room. At least I don't have to fake this part.
Tuesday, February 11, 2014
A twisted friend
Today we completed the first course of intense treatment. Done, goodbye, gone. May I never have to do it again. Let me say it again, with all of your and my prayers, blessings, thoughts and vibes, may I never have to do it again.
I mean it one thousand percent. Except chemo is a twisted friend. Chemo is awful. And she is the recovery. Chemo is arduous. But she is the path to health. To me, it is chemo crack. And by that I mean this horrible thing you never want to do, but once you start you are afraid to stop. Chemo stops the cancer, so why stop chemo?
And I'm not done. I have go back for twelve more weeks in three weeks. But it is difficult to want so desperately to be done with something but also afraid of my body betraying me. Hold still. Be gone. Don't grow back. Or anywhere else. But thank you for nourishing me and my babies, generally keeping me in good health, responding to the chemo, stretching, growing, carrying and keeping me. And not throwing up - not once yet in treatment for the record. See, it is complicated.
Anyway, I thought I'd feel triumphant today. I decidedly do not.
Not sure what flat affect means to you. To Jim and me, it describes someone or thing without discernible character or personality. When we were house-hunting we found a lot of houses that made no impression on us. Flat affect. Occasionally, we have a waiter who fits the bill.
These days, it's us. After treatment today, I asked Jim what word he'd use to describe how we are. His first choice was stabilized. His second was flat affect. It's a good choice. We aren't too sad. We aren't too happy. We've become that turtle family, the Slowskis.
My word choice was depressed. No, not really, Mom. Just blue. Or maybe more positively blah. On the way home from treatment, Jim and I made a list of things to be grateful for to help me adjust my mindset. Our list included boys' good health (minus two cases of croup last week and one case, so far, of pink eye this week); Jim's health; amazing support from you peeps; our families; Whole Foods mashed potatoes; NCRC; good jobs; and cookies. I am cultivating my gratitude to adjust my attitude.
One of my medical professionals (I have so many!) pointed out to me that cancer takes you where you are. Support from family? Friends? Faith? Community? Finances? Fortitude? It just comes regardless. And so I am also so touched by and grateful for your help. It matters to us. And it makes a difficult thing easier.
I mean it one thousand percent. Except chemo is a twisted friend. Chemo is awful. And she is the recovery. Chemo is arduous. But she is the path to health. To me, it is chemo crack. And by that I mean this horrible thing you never want to do, but once you start you are afraid to stop. Chemo stops the cancer, so why stop chemo?
And I'm not done. I have go back for twelve more weeks in three weeks. But it is difficult to want so desperately to be done with something but also afraid of my body betraying me. Hold still. Be gone. Don't grow back. Or anywhere else. But thank you for nourishing me and my babies, generally keeping me in good health, responding to the chemo, stretching, growing, carrying and keeping me. And not throwing up - not once yet in treatment for the record. See, it is complicated.
Anyway, I thought I'd feel triumphant today. I decidedly do not.
Not sure what flat affect means to you. To Jim and me, it describes someone or thing without discernible character or personality. When we were house-hunting we found a lot of houses that made no impression on us. Flat affect. Occasionally, we have a waiter who fits the bill.
These days, it's us. After treatment today, I asked Jim what word he'd use to describe how we are. His first choice was stabilized. His second was flat affect. It's a good choice. We aren't too sad. We aren't too happy. We've become that turtle family, the Slowskis.
My word choice was depressed. No, not really, Mom. Just blue. Or maybe more positively blah. On the way home from treatment, Jim and I made a list of things to be grateful for to help me adjust my mindset. Our list included boys' good health (minus two cases of croup last week and one case, so far, of pink eye this week); Jim's health; amazing support from you peeps; our families; Whole Foods mashed potatoes; NCRC; good jobs; and cookies. I am cultivating my gratitude to adjust my attitude.
One of my medical professionals (I have so many!) pointed out to me that cancer takes you where you are. Support from family? Friends? Faith? Community? Finances? Fortitude? It just comes regardless. And so I am also so touched by and grateful for your help. It matters to us. And it makes a difficult thing easier.
Sunday, February 9, 2014
These days
It was just an up and down week. And I think that is just the way the weeks are going to be. I had hoped that after stabilizing the grief there might be a productive, positive, period of incandescent recovery.
Instead, it is just a series of days. Some are pretty good. Some pretty bad.
I also thought we'd march through this with some dignity and grace. But that was too ambitious. We'll simply march through this.
It is hard to explain how limited we are. One example is our plan to travel to Florida for the holiday weekend. Warm weather, sunshine and a pool were calling us south. We struggled for weeks to finalize the plans. It finally dawned on us that it was just too hard. It would take us too far from the little arc of our post-diagnosis days.
We are socializing, living, working and recovering in this minature version of our lives. We see fewer people. We exhaust more easily. We stick around the neighborhood. We went out to dinner last night and we were tired and ready for bed well before the check arrived.
I thought I'd feel triumphant heading into the fourth and final of the first series of chemo. I don't. Instead I'm anxious and tense.
Today, to comfort ourselves, we puttered around the house most of the day. Brunch with friends. Naps for everyone. All four of us went out for a drive in the snow and a trip to the grocery store.
I continued a little ritual of mine. I've been spending the Sundays before treatment making Ian's baby food. Today was sweet potatoes, green peas, yellow squash and pears.
Tomorrow is a full work day. Tuesday is the last of the tough series. I have a few weeks to catch my breath and then 12 quick weeks of the "easy stuff." This will take us through Jim's birthday, Miles' birthday, my birthday, our anniversary. Through Spring. Not sure what the groundhog saw, but I see a tough Spring ahead for us.
Instead, it is just a series of days. Some are pretty good. Some pretty bad.
I also thought we'd march through this with some dignity and grace. But that was too ambitious. We'll simply march through this.
It is hard to explain how limited we are. One example is our plan to travel to Florida for the holiday weekend. Warm weather, sunshine and a pool were calling us south. We struggled for weeks to finalize the plans. It finally dawned on us that it was just too hard. It would take us too far from the little arc of our post-diagnosis days.
We are socializing, living, working and recovering in this minature version of our lives. We see fewer people. We exhaust more easily. We stick around the neighborhood. We went out to dinner last night and we were tired and ready for bed well before the check arrived.
I thought I'd feel triumphant heading into the fourth and final of the first series of chemo. I don't. Instead I'm anxious and tense.
Today, to comfort ourselves, we puttered around the house most of the day. Brunch with friends. Naps for everyone. All four of us went out for a drive in the snow and a trip to the grocery store.
I continued a little ritual of mine. I've been spending the Sundays before treatment making Ian's baby food. Today was sweet potatoes, green peas, yellow squash and pears.
Tomorrow is a full work day. Tuesday is the last of the tough series. I have a few weeks to catch my breath and then 12 quick weeks of the "easy stuff." This will take us through Jim's birthday, Miles' birthday, my birthday, our anniversary. Through Spring. Not sure what the groundhog saw, but I see a tough Spring ahead for us.
Monday, February 3, 2014
Oh, February
February in DC is cruel. It is colder, meaner, grayer than you think anything after January could be. And yet it is.
How to describe the weekend. Jim and I fighting cancer are like a two man tug-a-rope team against cancer. Except I can only pull for me and Jim has to keep pulling even when I take a break. Jim took a break this weekend and cancer snapped the rope free and we collapsed. Good to know what that looks like.
Not fair for Jim, of course, to be the one who can't take a break. But that's the thing about cancer. No one cares about fair.
So back to the weekend. We had good company, visits with friends and family. We had sunshine. We had warm days and long walks. We had huge Wiz and Caps games and wins. But it was February and it was cruel.
We are at least learning. Weekends are harder. I think because my limitations, chiefly, my energy and enthusiasm, are more obvious. And by obvious, I mean, burdensome. I don't have the bandwidth with the kids, the socializing, the chores, any else's agenda. I'm done in by 4 pm.
"Good" days are harder too. Not feeling good is easier to understand than my new version of a good day. Today, for example, is a good day. Jim and I were up all night last night with Miles with a terrible croupy cough. Four steam showers. One call to the pediatrician. Lots of crying for Mom who was trying to steer clear given her immune system. Jittery from lack of sleep, deep bone pain, still small waves of nausea. The "good" day.
I'm trying to stay positive and I feel positive. I guess what I really feel is tired. Sometimes, actually tired. And sometimes, just why me tired.
I do not mean to sound a wretch. We are fortunate. We are well fed and cared for. Thank you. Friends, family, meals, flowers, cards, gifts continue to arrive. A necklace. FOKer bracelets (let me know if you need one). Cookies. Hats. Creams. Bookmarks. Earrings. Homemade soups. Did I mention cookies?!
Wiz leading Portland in the fourth quarter. Good work week ahead. Miles on the mend. Jim holding the rope. See, it's a cruel month but a short month.
An aside: At Ian's six month appointment, we teased with the pediatrician our concern that he would be developmentally delayed because everyone handles their grief the same way - clutching and carrying this big ole baby around like he was a newborn. At the end of the appointment, she actually sat him up on the table to evaluate him properly. You all are going to have to work harder. He sits, grabs, tries to crawl like he hasn't been adequately spoiled yet.
How to describe the weekend. Jim and I fighting cancer are like a two man tug-a-rope team against cancer. Except I can only pull for me and Jim has to keep pulling even when I take a break. Jim took a break this weekend and cancer snapped the rope free and we collapsed. Good to know what that looks like.
Not fair for Jim, of course, to be the one who can't take a break. But that's the thing about cancer. No one cares about fair.
So back to the weekend. We had good company, visits with friends and family. We had sunshine. We had warm days and long walks. We had huge Wiz and Caps games and wins. But it was February and it was cruel.
We are at least learning. Weekends are harder. I think because my limitations, chiefly, my energy and enthusiasm, are more obvious. And by obvious, I mean, burdensome. I don't have the bandwidth with the kids, the socializing, the chores, any else's agenda. I'm done in by 4 pm.
"Good" days are harder too. Not feeling good is easier to understand than my new version of a good day. Today, for example, is a good day. Jim and I were up all night last night with Miles with a terrible croupy cough. Four steam showers. One call to the pediatrician. Lots of crying for Mom who was trying to steer clear given her immune system. Jittery from lack of sleep, deep bone pain, still small waves of nausea. The "good" day.
I'm trying to stay positive and I feel positive. I guess what I really feel is tired. Sometimes, actually tired. And sometimes, just why me tired.
I do not mean to sound a wretch. We are fortunate. We are well fed and cared for. Thank you. Friends, family, meals, flowers, cards, gifts continue to arrive. A necklace. FOKer bracelets (let me know if you need one). Cookies. Hats. Creams. Bookmarks. Earrings. Homemade soups. Did I mention cookies?!
Wiz leading Portland in the fourth quarter. Good work week ahead. Miles on the mend. Jim holding the rope. See, it's a cruel month but a short month.
An aside: At Ian's six month appointment, we teased with the pediatrician our concern that he would be developmentally delayed because everyone handles their grief the same way - clutching and carrying this big ole baby around like he was a newborn. At the end of the appointment, she actually sat him up on the table to evaluate him properly. You all are going to have to work harder. He sits, grabs, tries to crawl like he hasn't been adequately spoiled yet.
Saturday, February 1, 2014
Big bad night
"I don't want to hear about how special you are." That about sums up how hard fucking cancer is. Gems like that from your A team.
More gems. People telling me that they hear my prognosis is good. Not sure where you heard it, but to be clear, I haven't.
I am strong and I can wage this fight, but please don't mistake my ability to fight for an ability to help anyone but my boys through.
Clothes dont fit. Completely bald. Taste-buds blown out. Lips scorched. Unrelenting fatigue. 13 more weeks, best case, of fucking chemo. Nausea. Bone pains. Being brave for the whole family. Carrying others on my back. Trying to be a trooper. Meeting other's needs. If all goes well, I get to have surgery and radiation and a lifetime of scary, stressful follow up. And that seems like a monumental if these days.
I have a six month old and a three year old. What the fuck. I want to raise them, not just have them.
Bad night.
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