I was asked about 57 times today how things were going and realized that I haven't really talked much about this chemo cycle.
Last Monday - Wednesday were fine. A big cheer for those legal steroids they give me before I get my chemo. As Thursday progressed, I began to feel a little tired, but nothing that a normal bedtime wouldn't fix. On Friday, I woke up queasy and feeling a little off. I had an early morning acupuncture appointment which usually helps, but instead made me jittery. The rest of Friday was rough ~ my stomach didn't settle and I was both tired and jittery. Not a pleasant combination!
Saturday I woke up early and did about 3 miles with my neighbors. The first 0.2 mile felt great. The remaining 2.8 miles...not so much. I pretty much felt like hell the majority of the day, but hung out with the little boys and hubby (in other words, I didn't take to my bed). Saturday night we had Kelly's work party and I am not going to lie, I was not sure about my ability to rally for it. But, we got there and it was like a switch went off and I started feeling quite a bit better ~ we ended up staying for the whole party. By Sunday, I was feeling 96% back to my normal self.
Tomorrow is my nadir day (blood count check), which Dr. S said I could skip if I was feeling well and didn't have any questions. I am planning on skipping it since I am back to feeling like myself.
Short version: 21 day chemo cycles: 2 days stink, 19 days are good. I can deal with that. [I bet you wish you knew there was a short version at the beginning, eh?]
Monday, April 30, 2012
Sunday, April 29, 2012
Empire Video
"How did you meet?" That seems like such a simple question to answer, but for Kelly and me, the answer isn't that straightforward. The short answer is that we met at a church youth group and worked at the same restaurant, and somehow through those two things became friends. We were friends through high school and college and then a little after. And then we weren't friends. Then we met again and within 10 months we were engaged to be married.
But tonight I was trying to think: "How did we become such good friends?" The answer, as I think it is with many friendships, is that I cannot pinpoint how it happened.
We did lots of different things together in those early years, but one recurring event was going to Empire Video (yes, the one on Glen! With the black and white stickers on the clear plastic cases!) to rent movies. Sometimes it was just the two of us, sometimes it was a bunch of us. But a trip to Empire Video was a whole night affair. We had to get to Empire Video, then wander the aisles to find a movie (and along the way discuss all the ridiculous titles we came across), then figure out food (with Kelly, this was a process often involving different stops), and then get to a house to watch the movie. And when we finally got there, we had to wait for the parents in question to finish the show they were watching because that is just how it was. (Looking back, I think the parents could have given two figs about the show, it was just a way for the parents to hang out a little bit with their elusive teenagers.) I think we watched the movie we selected the same night, but I can't figure out how we had time. I am starting to wonder if we had curfews...
As we wiled away those carefree evenings twenty plus years ago, I had no idea we were building the basis for our marriage.
But tonight I was trying to think: "How did we become such good friends?" The answer, as I think it is with many friendships, is that I cannot pinpoint how it happened.
We did lots of different things together in those early years, but one recurring event was going to Empire Video (yes, the one on Glen! With the black and white stickers on the clear plastic cases!) to rent movies. Sometimes it was just the two of us, sometimes it was a bunch of us. But a trip to Empire Video was a whole night affair. We had to get to Empire Video, then wander the aisles to find a movie (and along the way discuss all the ridiculous titles we came across), then figure out food (with Kelly, this was a process often involving different stops), and then get to a house to watch the movie. And when we finally got there, we had to wait for the parents in question to finish the show they were watching because that is just how it was. (Looking back, I think the parents could have given two figs about the show, it was just a way for the parents to hang out a little bit with their elusive teenagers.) I think we watched the movie we selected the same night, but I can't figure out how we had time. I am starting to wonder if we had curfews...
As we wiled away those carefree evenings twenty plus years ago, I had no idea we were building the basis for our marriage.
Friday, April 27, 2012
Haircut(s)
Last Friday I had my hair cut short because it started to fall out. I thought it was really short, until my hair started to fall out even faster and I realized that my version of short was not short enough. Plus, it was just looking weird.
This morning I grabbed Kelly's trimmer, set it to 4, and started to buzz what was left. And then I started laughing because I really suck at shaving heads (not that I knew that before). I called Kelly, who had Rory and Kyan in tow, and gave him the trimmer. He trimmed what was left of my 'long' hair and the little boys could have cared less.
I now look a little like a graying G.I. Jane (noggin only, no kick ass biceps). But, my bandanna stayed on a little better today, except when Ky thought it would be fun to take it off, and when I took the bandanna off my hair wasn't sticking straight up like it had been for the past week. Phew.
- Posted using BlogPress from my iPad
This morning I grabbed Kelly's trimmer, set it to 4, and started to buzz what was left. And then I started laughing because I really suck at shaving heads (not that I knew that before). I called Kelly, who had Rory and Kyan in tow, and gave him the trimmer. He trimmed what was left of my 'long' hair and the little boys could have cared less.
I now look a little like a graying G.I. Jane (noggin only, no kick ass biceps). But, my bandanna stayed on a little better today, except when Ky thought it would be fun to take it off, and when I took the bandanna off my hair wasn't sticking straight up like it had been for the past week. Phew.
- Posted using BlogPress from my iPad
Thursday, April 26, 2012
Little Prayers
I don't think I ever prayed for something miraculous until the night of October 22 and the day of October 23. And those prayers, they didn't work. As much as I begged, pleaded, gave myself up, and bartered, a miracle did not happen.
Since I have found out my prognosis, I have not prayed for a miraculous recovery. Perhaps I am too marred by my prayers for Cora not being answered, or I am too practical to consider a miracle as a possibility, but I am still willing to turn to prayer. I pray for "small" things. I pray that the side-effects of my treatments will allow me to still live a good life for as long as possible. I pray that I will continue to be able to bring Rory and Ky to school each morning. I pray that I will see Crosby take his first steps. When I start to venture into miraculous territory, I pray that I will drop all three boys at their kindergarten doors on the first day of school.
Maybe I think these "little" prayers are easier to answer. I think miraculous prayers can be answered, but I also think "little" ones can be too ~ and those are what are keeping me going today.
Since I have found out my prognosis, I have not prayed for a miraculous recovery. Perhaps I am too marred by my prayers for Cora not being answered, or I am too practical to consider a miracle as a possibility, but I am still willing to turn to prayer. I pray for "small" things. I pray that the side-effects of my treatments will allow me to still live a good life for as long as possible. I pray that I will continue to be able to bring Rory and Ky to school each morning. I pray that I will see Crosby take his first steps. When I start to venture into miraculous territory, I pray that I will drop all three boys at their kindergarten doors on the first day of school.
Maybe I think these "little" prayers are easier to answer. I think miraculous prayers can be answered, but I also think "little" ones can be too ~ and those are what are keeping me going today.
Wednesday, April 25, 2012
Strawberries
Since I was a kid my parents have had a great circle of friends. They go to dinner, go on week-long camping trips, have house gatherings, my mom and "the girls" go for breakfast, lunch, or shopping (or all three!), and my dad and "the guys" go on trips to Atlantic City or Las Vegas.
The kids were often part of the activities. I am the youngest of the kids, so I think for a fair number of things I was the only one that had to be brought along. One of these outings I remember is a trip to pick strawberries in the spring. It was my mom, Mrs. LeBrun, and (I think) a friend of mine. As I worked at picking strawberries (let's agree to use the word "work" in a fairly loose sense here), I looked up to see Mrs. LeBrun eating a strawberry. "Ew!" I said. "That strawberry has ant pee on it!" She looked up at me, and without a moment of hesitation said, "Ant pee is what gives my cheeks their rosy glow." I think of her almost every time I eat a strawberry off the vine.
This morning we received the devastating news that Mrs. LeBrun, (Bunny, but she will always be Mrs. LeBrun to me) passed away while vacationing with her husband and some of the circle of friends in the Dominican Republic. Mr. LeBrun is working with the Embassy to bring her home to her son, her daughter, and their families. Please keep her family and friends in your prayers.
The kids were often part of the activities. I am the youngest of the kids, so I think for a fair number of things I was the only one that had to be brought along. One of these outings I remember is a trip to pick strawberries in the spring. It was my mom, Mrs. LeBrun, and (I think) a friend of mine. As I worked at picking strawberries (let's agree to use the word "work" in a fairly loose sense here), I looked up to see Mrs. LeBrun eating a strawberry. "Ew!" I said. "That strawberry has ant pee on it!" She looked up at me, and without a moment of hesitation said, "Ant pee is what gives my cheeks their rosy glow." I think of her almost every time I eat a strawberry off the vine.
This morning we received the devastating news that Mrs. LeBrun, (Bunny, but she will always be Mrs. LeBrun to me) passed away while vacationing with her husband and some of the circle of friends in the Dominican Republic. Mr. LeBrun is working with the Embassy to bring her home to her son, her daughter, and their families. Please keep her family and friends in your prayers.
Tuesday, April 24, 2012
Throwing Down the Gauntlet
About a week or so ago I got an email about the Adirondack Half Marathon and thought: "I should just train like I was going to run that." Then I was talking to my friend Amy via FB about it yesterday and somewhere along the way she asked me if I was serious about actually doing it and I said yes. WHAT?! I did, it is in writing. I looked at it a few moments ago just to confirm it wasn't some chemo-steroid induced dream, but I really did. She already registered!
Tonight I thought: "I should probably start running if I am going to run 13.1 miles in September," because you all might remember my earlier post about my last attempt to do such a thing. (For those who missed that one, it wasn't pretty.) I found and tossed on my running gear, grabbed my iPod, and headed out for the first time in well over a year for a run. I opted not to wear my watch. I am going to go timer-free this time, which if tonight is any indication, will make me twitch a great deal. Anyhow, let's just say I made it for the full distance I wanted to go, but I have quite a way to go before September.
But, then there is this other event. An open water swimming event in August that I had decided I was going to try to do, no matter what. It is a cable swim in Mirror Lake in Lake Placid, NY. There is a 2-mile version I completed two years ago and also 1-mile version. I planned to do the 1-mile version this year (I am a little practical) and emailed my coach a question about it last night. The next thing I knew a certain individual with the initials DDD emailed me to inform me I was registered. That will teach me to ask questions, won't it?
In one day I managed to sign up for both a 1-mile open water swim and a 13.1 mile run. I think chemotherapy makes me nuts.
If you care to join me (and some other great folks) on either endeavor, here are the links to register. And don't let me hold you back ~ try the 2 mile cable swim or the full marathon!
Betsy Owens Memorial Lake Swims:
https://www.clubassistant.com/club/meet_information.cfm?c=1538&smid=3960
Adirondack Marathon Distance Festival:
http://www.adirondackmarathon.org/
Tonight I thought: "I should probably start running if I am going to run 13.1 miles in September," because you all might remember my earlier post about my last attempt to do such a thing. (For those who missed that one, it wasn't pretty.) I found and tossed on my running gear, grabbed my iPod, and headed out for the first time in well over a year for a run. I opted not to wear my watch. I am going to go timer-free this time, which if tonight is any indication, will make me twitch a great deal. Anyhow, let's just say I made it for the full distance I wanted to go, but I have quite a way to go before September.
But, then there is this other event. An open water swimming event in August that I had decided I was going to try to do, no matter what. It is a cable swim in Mirror Lake in Lake Placid, NY. There is a 2-mile version I completed two years ago and also 1-mile version. I planned to do the 1-mile version this year (I am a little practical) and emailed my coach a question about it last night. The next thing I knew a certain individual with the initials DDD emailed me to inform me I was registered. That will teach me to ask questions, won't it?
In one day I managed to sign up for both a 1-mile open water swim and a 13.1 mile run. I think chemotherapy makes me nuts.
If you care to join me (and some other great folks) on either endeavor, here are the links to register. And don't let me hold you back ~ try the 2 mile cable swim or the full marathon!
Betsy Owens Memorial Lake Swims:
https://www.clubassistant.com/club/meet_information.cfm?c=1538&smid=3960
Adirondack Marathon Distance Festival:
http://www.adirondackmarathon.org/
Monday, April 23, 2012
What I Do on Treatment Days
My long treatment days are very exciting. So exciting I need to tell you all about them.
I schedule my appointments late enough so Kelly and I can bring Rory and Ky to school. I start my visits with bloodwork, which is always an adventure because of my crap veins. Today I gave up enough blood for the tests they needed to see before allowing me to proceed with chemo, but waited for the rest until my port was accessed. I think the lab techs draw straws to see who has me.
Then I go up to Dr. S's office. We talk about my symptoms and side-effects, test results, and upcoming treatments and testing. I don't think I have praised him enough, but he deserves high praise. I mean, really, he has to deal with me. And I am pretty sure he doesn't throw back a shot of whiskey before walking in the room.
Then we go back downstairs and I settle in to my bed while my nurse (Kate on long days), gets the meds I need. I get fluids throughout, but start with steroids and anti-nausea meds, then onto the first chemo drug, and finally onto the last one. While I am getting these meds, Kelly and I have lunch, try to watch a movie (there are a lot of interruptions!), and hang out.
This is perhaps the best part - that Kelly comes with me. He makes me laugh a lot as we wait between appointments. When I come out of the lab with the bandage on my hand instead of my arm, he knows it didn't go well. When I get on the scale he knows to wait at the doorway. When I talk to Dr. S. he doesn't snicker too much at my roundabout, semi-flakey answers. When they access my port, he cringes when I do-even though it doesn't hurt. When I comment on Jeremy Renner's cute bum in a movie, he concurs. Oh wait, no he does not.
He is a great support for a million little reasons and a million big ones. One thing I never question is the fact that I knocked it out of the park the day I married him.
I schedule my appointments late enough so Kelly and I can bring Rory and Ky to school. I start my visits with bloodwork, which is always an adventure because of my crap veins. Today I gave up enough blood for the tests they needed to see before allowing me to proceed with chemo, but waited for the rest until my port was accessed. I think the lab techs draw straws to see who has me.
Then I go up to Dr. S's office. We talk about my symptoms and side-effects, test results, and upcoming treatments and testing. I don't think I have praised him enough, but he deserves high praise. I mean, really, he has to deal with me. And I am pretty sure he doesn't throw back a shot of whiskey before walking in the room.
Then we go back downstairs and I settle in to my bed while my nurse (Kate on long days), gets the meds I need. I get fluids throughout, but start with steroids and anti-nausea meds, then onto the first chemo drug, and finally onto the last one. While I am getting these meds, Kelly and I have lunch, try to watch a movie (there are a lot of interruptions!), and hang out.
This is perhaps the best part - that Kelly comes with me. He makes me laugh a lot as we wait between appointments. When I come out of the lab with the bandage on my hand instead of my arm, he knows it didn't go well. When I get on the scale he knows to wait at the doorway. When I talk to Dr. S. he doesn't snicker too much at my roundabout, semi-flakey answers. When they access my port, he cringes when I do-even though it doesn't hurt. When I comment on Jeremy Renner's cute bum in a movie, he concurs. Oh wait, no he does not.
He is a great support for a million little reasons and a million big ones. One thing I never question is the fact that I knocked it out of the park the day I married him.
Sunday, April 22, 2012
Gift
I can't tell you how many times I have read about "cancer as a gift." Worst. Gift. Ever. I want my gift receipt (receipts, actually) and I am returning for a full refund.
I "get" the idea that having terminal cancer suddenly makes you see the world filled with rainbows and people who sing their way through each day (kind of like the Buffy musical!), but really ~ I think that is a load of crap.
Cancer sucks. I can't find anything good about spending lots of time at the cancer center (actually, I can, the people...all of them...are great). I don't think this port in my chest had any wrapping paper or a bow on it. I am positive that the bags the chemo drugs come in are not gift bags. And if they are, we really need to talk about marketing. The handful of pills I get to swallow each day are an exciting combination, but again, not a present.
I have read the same phrase used to describe the way people see life after losing a loved one. By losing someone close, suddenly people embrace each day and the people in it. But I wasn't throwing any time by the wayside before we lost Cora ~ I knew that our kids would only be little for a short time and I was savoring that time. Savoring the moments when they want to sit near you, and give you kisses and hugs in public, and would rather play with you than their buddies. I loved it. I still love it.
I think the term "gift" in this sense is bullshit. I think it is used by people who knew all along that they worked too much, or were in crappy relationships, or never attempted to find the good in things. I didn't need this "gift." I didn't suddenly start finding the good in life when I found out I had cancer or when Cora died. I already had it, I still have it.
I "get" the idea that having terminal cancer suddenly makes you see the world filled with rainbows and people who sing their way through each day (kind of like the Buffy musical!), but really ~ I think that is a load of crap.
Cancer sucks. I can't find anything good about spending lots of time at the cancer center (actually, I can, the people...all of them...are great). I don't think this port in my chest had any wrapping paper or a bow on it. I am positive that the bags the chemo drugs come in are not gift bags. And if they are, we really need to talk about marketing. The handful of pills I get to swallow each day are an exciting combination, but again, not a present.
I have read the same phrase used to describe the way people see life after losing a loved one. By losing someone close, suddenly people embrace each day and the people in it. But I wasn't throwing any time by the wayside before we lost Cora ~ I knew that our kids would only be little for a short time and I was savoring that time. Savoring the moments when they want to sit near you, and give you kisses and hugs in public, and would rather play with you than their buddies. I loved it. I still love it.
I think the term "gift" in this sense is bullshit. I think it is used by people who knew all along that they worked too much, or were in crappy relationships, or never attempted to find the good in things. I didn't need this "gift." I didn't suddenly start finding the good in life when I found out I had cancer or when Cora died. I already had it, I still have it.
Saturday, April 21, 2012
Driving at Night
There are a few memoir-style writers that I really enjoy, even though our lives share only thin threads of similarity. One of them is Annie Lamott, who is currently on tour promoting her latest book. Because of this (HA!, no So...) she is doing all sorts of press, which means all sorts of additional nuggets I get to read.
This week she did an interview with the New York Times and was asked about the best parenting advice she ever received. Her response was:
"I think the single best line of advice I ever heard on being a parent, a writer, a seeker, an anything, is something the great E. L. Doctorow said years and years ago, that writing is like driving at night with the headlights on: you can only see a little ways in front of you but you can make the whole journey this way. This may not be verbatim, but for me it has rung true in every area of my life."
When I was diagnosed with Stage IV cancer, one of the first things I did was started stalking the cancer center therapist with phone calls. Desperate calls...he had to call me back because I had no idea how I was going to address this with my children (not to mention myself). He is the one that helped me realize that this is one step at a time. First explain the port (which they are so over now), then explain the hair, and then explain whatever comes next, when it comes.
I am trying to following this advice for myself as well. It takes just about every bit of willpower not to ask Dr. S "What about after that?," each time we talk about the next step, or how things will progress. I know that he cannot answer that question, but I really, really like plans. I even like to have a Plan B in case the Plan A doesn't work out. I have a treatment plan, but the long-term plan...the way this will all play out...I don't have, and I can't have. I need to learn that my life is like driving at night with only the headlights on. (But, maybe I could at least have some high beams?)
This week she did an interview with the New York Times and was asked about the best parenting advice she ever received. Her response was:
"I think the single best line of advice I ever heard on being a parent, a writer, a seeker, an anything, is something the great E. L. Doctorow said years and years ago, that writing is like driving at night with the headlights on: you can only see a little ways in front of you but you can make the whole journey this way. This may not be verbatim, but for me it has rung true in every area of my life."
When I was diagnosed with Stage IV cancer, one of the first things I did was started stalking the cancer center therapist with phone calls. Desperate calls...he had to call me back because I had no idea how I was going to address this with my children (not to mention myself). He is the one that helped me realize that this is one step at a time. First explain the port (which they are so over now), then explain the hair, and then explain whatever comes next, when it comes.
I am trying to following this advice for myself as well. It takes just about every bit of willpower not to ask Dr. S "What about after that?," each time we talk about the next step, or how things will progress. I know that he cannot answer that question, but I really, really like plans. I even like to have a Plan B in case the Plan A doesn't work out. I have a treatment plan, but the long-term plan...the way this will all play out...I don't have, and I can't have. I need to learn that my life is like driving at night with only the headlights on. (But, maybe I could at least have some high beams?)
The Entry-Free Evening
Since I made this blog public, there have been two nights I have not posted an entry. Tonight was going to be a third, but then I thought of the pile of emails and text messages I would get tomorrow asking if I was okay because there was no blog entry. So (crud...I was trying not to use that...) I thought I would blog about not blogging because it seems to worry some folks.
The first time I didn't blog was because I was out late having a good time with Kelly and some friends. By the time I got home, I just wanted to go to bed. See...that wasn't very exciting.
The second time was one of the days soon after chemo when I was alone with the kids all day. By the time Kelly got home I was exhausted and my brain was mush. See...also not exciting.
I do try to write each night, but if there is not a blog entry, it does not mean anything major is wrong, just that I am taking a night off. Or that my children have tied me up and stolen my iPad to play Angry Birds.
The first time I didn't blog was because I was out late having a good time with Kelly and some friends. By the time I got home, I just wanted to go to bed. See...that wasn't very exciting.
The second time was one of the days soon after chemo when I was alone with the kids all day. By the time Kelly got home I was exhausted and my brain was mush. See...also not exciting.
I do try to write each night, but if there is not a blog entry, it does not mean anything major is wrong, just that I am taking a night off. Or that my children have tied me up and stolen my iPad to play Angry Birds.
Thursday, April 19, 2012
Putting Things Away
On January 2, Kelly and I went shopping for a chest. We wanted something to store Cora's "things" in, and I deemed a plastic tote in the basement unacceptable (as did Kelly). So we ordered a beautiful chest where we could put her things.
I had piles of things that remind me of Cora around the house. For months I had a box in the dining room of all of the cards and letters we received after she passed away. In our bedroom alcove I had a bag with the guest book, prayer cards, a memory candle, and other things from her calling hours and funeral. Under a guest bed I had a box of clothing that she would never wear. In the nursery closet I had a basket of blankets, sweaters, and hats that people had made for her.
At the end of February we got a call that the chest we ordered had been discontinued and it would not be arriving. In early March I ordered a different one that was back ordered for 2 weeks, then 4 weeks, then 6 weeks. It finally arrived last week. It was placed in our bedroom and I did nothing. I didn't clean it out. I didn't gather her things. It just sat there for a week.
This afternoon I decided it was time. I did okay as I put the box of cards and items that were never "hers" away, but then I came to the onsie she was wearing when she died. It was so little. Then I came to the shirt I had on at the hospital and one of her onsies that had not been washed. I had to just sit for a while, to catch my breath, to remember that it has not yet been 6 months, but it feels like so much longer.
I had piles of things that remind me of Cora around the house. For months I had a box in the dining room of all of the cards and letters we received after she passed away. In our bedroom alcove I had a bag with the guest book, prayer cards, a memory candle, and other things from her calling hours and funeral. Under a guest bed I had a box of clothing that she would never wear. In the nursery closet I had a basket of blankets, sweaters, and hats that people had made for her.
At the end of February we got a call that the chest we ordered had been discontinued and it would not be arriving. In early March I ordered a different one that was back ordered for 2 weeks, then 4 weeks, then 6 weeks. It finally arrived last week. It was placed in our bedroom and I did nothing. I didn't clean it out. I didn't gather her things. It just sat there for a week.
This afternoon I decided it was time. I did okay as I put the box of cards and items that were never "hers" away, but then I came to the onsie she was wearing when she died. It was so little. Then I came to the shirt I had on at the hospital and one of her onsies that had not been washed. I had to just sit for a while, to catch my breath, to remember that it has not yet been 6 months, but it feels like so much longer.
Wednesday, April 18, 2012
Bands
It was a late night with the Bunco girls...and we had a fond farewell to She Who Shall Not Be Named. She went out with a bang, winning most Buncos and ending the final round with a Bunco. (For non-Bunco readers (in other words, all of you except the other 11 women I play with) ~ she won big.)
Anyhow, I was going to do a longer post tonight about my other half, but it is late and my mind is burnt from all that Bunco-ness and I couldn't even start to do it justice. So (I know, I use "So" a lot as a transition ~ I will work on that.), tonight's post is short and sweet.
Two of my friends recently sent me some Team SMAC bands to share with, well, um...Team SMAC. And when I saw "two friends" what I really mean is "my two pot-brownie friends" because you know a little bit about them already. They sent me many bands and I am sharing, sharing, sharing, but I still have more to share. Here they are:
The whole saying is Team SMAC LIVE for today, HOPE for tomorrow
If you would like one, let me know. If you are someone I see, tell me when I see you. If I don't see you around town, shoot me an email with your address (if I don't have it) and I can send it, or send it with someone, or send it via carrier pigeon. Whatever works. For those of you who are readers, but I don't know you (my sock-leaving, card sending, kindness overflowing anonymous readers) - don't hesitate to shoot me an email if you'd like one. I promise I won't stalk you. Much.
Anyhow, I was going to do a longer post tonight about my other half, but it is late and my mind is burnt from all that Bunco-ness and I couldn't even start to do it justice. So (I know, I use "So" a lot as a transition ~ I will work on that.), tonight's post is short and sweet.
Two of my friends recently sent me some Team SMAC bands to share with, well, um...Team SMAC. And when I saw "two friends" what I really mean is "my two pot-brownie friends" because you know a little bit about them already. They sent me many bands and I am sharing, sharing, sharing, but I still have more to share. Here they are:
If you would like one, let me know. If you are someone I see, tell me when I see you. If I don't see you around town, shoot me an email with your address (if I don't have it) and I can send it, or send it with someone, or send it via carrier pigeon. Whatever works. For those of you who are readers, but I don't know you (my sock-leaving, card sending, kindness overflowing anonymous readers) - don't hesitate to shoot me an email if you'd like one. I promise I won't stalk you. Much.
Tuesday, April 17, 2012
And So It Goes...
My hair started to fall out today.
I discovered this at the Y. Post-swim class with Kyan. All of this chatter and little ones running around the locker room and I end up with a clump of hair. Okay, I am exaggerating...it was not really a clump. More like a whole bunch of strands. And then another bunch. And another. And then it stopped. I thought I got 'em all. But then later in the afternoon there were more, and more. Then it stopped again. And I stopped running my fingers through my hair.
I was expecting this to be traumatic, but it isn't so bad. What is traumatic is that those bunches of hair had a lot (A LOT!) of gray in them. Gray hairs. I get that I may not be the youngest mom around, but if you were to see these bunches of hair you would likely think: "What older lady left a bunch of her hair here?" And then you should also think "That's gross." Because bunches of hair should not be left anywhere.
I am now debating whether I should shave my head or not. Right now I am thinking I will hold off until it gets noticeable ~ rumor (aka Kelly's cousin who has been down this road and is filled with trusty information) has it that it takes about a week, so I could have a few days before it gets odd looking. We'll see.
I discovered this at the Y. Post-swim class with Kyan. All of this chatter and little ones running around the locker room and I end up with a clump of hair. Okay, I am exaggerating...it was not really a clump. More like a whole bunch of strands. And then another bunch. And another. And then it stopped. I thought I got 'em all. But then later in the afternoon there were more, and more. Then it stopped again. And I stopped running my fingers through my hair.
I was expecting this to be traumatic, but it isn't so bad. What is traumatic is that those bunches of hair had a lot (A LOT!) of gray in them. Gray hairs. I get that I may not be the youngest mom around, but if you were to see these bunches of hair you would likely think: "What older lady left a bunch of her hair here?" And then you should also think "That's gross." Because bunches of hair should not be left anywhere.
I am now debating whether I should shave my head or not. Right now I am thinking I will hold off until it gets noticeable ~ rumor (aka Kelly's cousin who has been down this road and is filled with trusty information) has it that it takes about a week, so I could have a few days before it gets odd looking. We'll see.
Monday, April 16, 2012
Why Your Mother Muttered
Parenting is a tough job. Parenting with a "life-threatening" illness (I really dislike that phrase) is tougher. I want my children's memories of me to involve sun drenched afternoons playing outside and picnics on the grass. Today would have been a lovely day for such memories. But, we had other things to do.
Today involved running Kyan to an appointment, taking Crosby for a walk so he would sleep, and telling Rory that, no, he could not spend the afternoon naked (I blame my father-in-law for that) while he went traipsing through the woods with grandma. Then I was getting dinner ready and the Rory and Kyan were not sharing well. What am I saying? Rory and Kyan were not sharing. There is no "well" about it. So the "two minute sharing rule" was declared. And when the two minutes were up the older boys did not want to follow the sharing rule and Crosby thought it would be a good time to wake up crying and so there were tears and sad faces and rice that needed to prepared. We ended up with two boys sitting on the floor while I was cursing under my breath because I could not remember where I put the Baby Bjorn (seriously, it has been 5 days...where IS that thing?), and, well...we won't discuss the rice.
I have tried to remember what I remember from when I was 4 or younger ~ and the answer is not much. Glimmers of things, more than full memories. Perhaps the boys will remember sitting on the kitchen floor while I muttered to myself. I guess if that is the case, at least now they will know why I was muttering!
Today involved running Kyan to an appointment, taking Crosby for a walk so he would sleep, and telling Rory that, no, he could not spend the afternoon naked (I blame my father-in-law for that) while he went traipsing through the woods with grandma. Then I was getting dinner ready and the Rory and Kyan were not sharing well. What am I saying? Rory and Kyan were not sharing. There is no "well" about it. So the "two minute sharing rule" was declared. And when the two minutes were up the older boys did not want to follow the sharing rule and Crosby thought it would be a good time to wake up crying and so there were tears and sad faces and rice that needed to prepared. We ended up with two boys sitting on the floor while I was cursing under my breath because I could not remember where I put the Baby Bjorn (seriously, it has been 5 days...where IS that thing?), and, well...we won't discuss the rice.
I have tried to remember what I remember from when I was 4 or younger ~ and the answer is not much. Glimmers of things, more than full memories. Perhaps the boys will remember sitting on the kitchen floor while I muttered to myself. I guess if that is the case, at least now they will know why I was muttering!
Sunday, April 15, 2012
The Articles
Today our local paper ran two pieces today on my family. This came about from the fall, when Cora's sand pictures were first on Facebook. The reporter, Meg, got wind of the pictures from a mutual friend, Cory, and asked if we would be willing to talk to her for a story. At that time we said no ~ it did not feel right ~ but we would be willing to revisit the idea down the road.
After I found out my cancer was stage 4, I was going through my emails and found the email from Meg. Kelly and I talked about it and decided to contact her about the story. We wanted Cora's story to be shared, and we also wanted to let other grieving parents know that they are not alone.
My diagnosis changed Meg's approach to the story (I was glad to see there were two stories, so that Cora's story did not get "lost."), and I will not lie...I was very nervous about how it would be covered. I noticed many people shared the story on Facebook today. So many people were very supportive, but I also noticed that some people who do not know me often commented on the article with statements such as, "That is so sad/tragic/etc." It is hard for me to comprehend others thinking of my life in that way. The loss of Cora is devastating. My stage 4 cancer diagnosis is devastating. But is my life sad? I don't think so. I think it has some very sad moments that affect every single day. But it also has amazing, funny, happy moments that make it so worth living.
Links to the articles:
About Cora's sand pictures: http://m.poststar.com/photos-from-around-the-world-honor-lost-daughter/article_c0e2625e-86a0-11e1-9b4c-001a4bcf887a.html
About my family: http://m.poststar.com/news/local/family-tries-to-find-strength-to-go-on/article_7b2f5898-86a0-11e1-9e05-001a4bcf887a.html
After I found out my cancer was stage 4, I was going through my emails and found the email from Meg. Kelly and I talked about it and decided to contact her about the story. We wanted Cora's story to be shared, and we also wanted to let other grieving parents know that they are not alone.
My diagnosis changed Meg's approach to the story (I was glad to see there were two stories, so that Cora's story did not get "lost."), and I will not lie...I was very nervous about how it would be covered. I noticed many people shared the story on Facebook today. So many people were very supportive, but I also noticed that some people who do not know me often commented on the article with statements such as, "That is so sad/tragic/etc." It is hard for me to comprehend others thinking of my life in that way. The loss of Cora is devastating. My stage 4 cancer diagnosis is devastating. But is my life sad? I don't think so. I think it has some very sad moments that affect every single day. But it also has amazing, funny, happy moments that make it so worth living.
Links to the articles:
About Cora's sand pictures: http://m.poststar.com/photos-from-around-the-world-honor-lost-daughter/article_c0e2625e-86a0-11e1-9b4c-001a4bcf887a.html
About my family: http://m.poststar.com/news/local/family-tries-to-find-strength-to-go-on/article_7b2f5898-86a0-11e1-9e05-001a4bcf887a.html
Saturday, April 14, 2012
Saturday
What a great Saturday...perfect weather to spend the vast majority of the day outside.
Some highlights:
Kelly's French Toast for breakfast. My mom and dad used to laugh when I told them I was going to marry someone who would cook...did I luck out or what?
I cleaned out my cupboard. You probably have one just like it. One that has all sorts of stuff and you really need to clean it but you can never find the time. I cleaned it today. Ahhhh...
We have a huge delivery box in our garage. Today it got dragged out into the yard and turned into a house, boat, and submarine. It was also for a few moments an amusement park ride as cousin Jackson went in the box while Rory and Kyan tipped the box over. And then they did it again. And then the adults put a stop to that one...
Crosby went on his first swing ride. He was not impressed.
After dinner we walked to get ice cream (sherbet for me, and yes, I like sherbet, it doesn't mean I am weird).
Rory fell asleep in my lap and then Kyan fell asleep as we cuddled singing songs.
Some highlights:
Kelly's French Toast for breakfast. My mom and dad used to laugh when I told them I was going to marry someone who would cook...did I luck out or what?
I cleaned out my cupboard. You probably have one just like it. One that has all sorts of stuff and you really need to clean it but you can never find the time. I cleaned it today. Ahhhh...
We have a huge delivery box in our garage. Today it got dragged out into the yard and turned into a house, boat, and submarine. It was also for a few moments an amusement park ride as cousin Jackson went in the box while Rory and Kyan tipped the box over. And then they did it again. And then the adults put a stop to that one...
Crosby went on his first swing ride. He was not impressed.
After dinner we walked to get ice cream (sherbet for me, and yes, I like sherbet, it doesn't mean I am weird).
Rory fell asleep in my lap and then Kyan fell asleep as we cuddled singing songs.
Friday, April 13, 2012
Dealing with Death
I used to be horrible at knowing what to do when someone passed away ~ what was enough? Should I call? Is an email to impersonal? What do they want/need to eat? What about flowers? Should I go to the funeral?
I think knowing what to do when the someone is a child is even harder. In the two years before we lost Cora two of my dearest friends lost children. I had no idea what to do. Of course, even though it is not anything I ever wanted to learn, I now know what can be done. I wanted to share a few of those things with you because I think grief is such an intensely personal journey that sometimes people are afraid that if they act, they will somehow make things worse.
1) Go to the calling hours and funeral.
Both can be emotionally draining. Both can mean shuffling around your schedule because they are unlikely to be at the perfect time for you. But seeing your face, hugging you, and sharing a few words with you can make a world of difference. At Cora's funeral I couldn't even look at everyone who was there, but just knowing how loved she was, and how loved we were, helped.
2) Consider basic needs of the family.
Food. Childcare. Dog care. Groceries.
Our vet took care of our dogs for us for a week. People brought food that we didn't even realize we needed. My brother went to the grocery store. My brother-in-law and his wife took care of our older boys so we could take care of all the things we needed to (and to keep the little boys as sheltered as possible).
3) Share your gifts.
One of my mom's best friends wrote a poem for Cora that I still read. I have three necklaces given to me in memory of Cora. I have a beautiful shawl I snuggled up in night after night that one of the OB nurses made for me. I could go on and on, but the point is that each one of these things reminds me both of Cora and the giver.
4) Send a card. Send an email. Send a FB message.
It doesn't matter how you contacted us, we appreciated you taking the time. We didn't respond to most, but we read every single one.
5) Share your stories.
It is okay to tell us what you have been through. My two close friends who lost children would call me, always with the qualifier that I didn't need to call them back. One day when I could barely function I called one simply to ask: "How did you get out of bed?" Another day I talked to my other friend about losing our daughters. They were tear-filled conversations, but they made me feel like I wasn't alone or crazy.
6) Talk to the person.
I returned to my swim group a few weeks after Cora died. It was awkward and I just wanted to swim, but we had to wait for the pool to be available. In that time, two friends came over and talked to me - clearly just to keep me occupied so I wouldn't lose it on deck - and then another friend came over and put his arm around me. Grief is very isolating in so many ways ~ it is a good thing to remind the person that they are not alone.
7) Follow your gut.
Do what you think you should do. If you feel like calling, call. If you would like to stop over, stop over. If you feel like you should do something, do it. Good people have good instincts - trust them.
In no way am I suggesting you need to do all of these things or exactly one of these things. Rather, don't hesitate to do something. If you don't get a response, don't think the person was upset or offended or didn't care. Quite the opposite will be true.
I think knowing what to do when the someone is a child is even harder. In the two years before we lost Cora two of my dearest friends lost children. I had no idea what to do. Of course, even though it is not anything I ever wanted to learn, I now know what can be done. I wanted to share a few of those things with you because I think grief is such an intensely personal journey that sometimes people are afraid that if they act, they will somehow make things worse.
1) Go to the calling hours and funeral.
Both can be emotionally draining. Both can mean shuffling around your schedule because they are unlikely to be at the perfect time for you. But seeing your face, hugging you, and sharing a few words with you can make a world of difference. At Cora's funeral I couldn't even look at everyone who was there, but just knowing how loved she was, and how loved we were, helped.
2) Consider basic needs of the family.
Food. Childcare. Dog care. Groceries.
Our vet took care of our dogs for us for a week. People brought food that we didn't even realize we needed. My brother went to the grocery store. My brother-in-law and his wife took care of our older boys so we could take care of all the things we needed to (and to keep the little boys as sheltered as possible).
3) Share your gifts.
One of my mom's best friends wrote a poem for Cora that I still read. I have three necklaces given to me in memory of Cora. I have a beautiful shawl I snuggled up in night after night that one of the OB nurses made for me. I could go on and on, but the point is that each one of these things reminds me both of Cora and the giver.
4) Send a card. Send an email. Send a FB message.
It doesn't matter how you contacted us, we appreciated you taking the time. We didn't respond to most, but we read every single one.
5) Share your stories.
It is okay to tell us what you have been through. My two close friends who lost children would call me, always with the qualifier that I didn't need to call them back. One day when I could barely function I called one simply to ask: "How did you get out of bed?" Another day I talked to my other friend about losing our daughters. They were tear-filled conversations, but they made me feel like I wasn't alone or crazy.
6) Talk to the person.
I returned to my swim group a few weeks after Cora died. It was awkward and I just wanted to swim, but we had to wait for the pool to be available. In that time, two friends came over and talked to me - clearly just to keep me occupied so I wouldn't lose it on deck - and then another friend came over and put his arm around me. Grief is very isolating in so many ways ~ it is a good thing to remind the person that they are not alone.
7) Follow your gut.
Do what you think you should do. If you feel like calling, call. If you would like to stop over, stop over. If you feel like you should do something, do it. Good people have good instincts - trust them.
In no way am I suggesting you need to do all of these things or exactly one of these things. Rather, don't hesitate to do something. If you don't get a response, don't think the person was upset or offended or didn't care. Quite the opposite will be true.
Wednesday, April 11, 2012
More Questions
Some answers to more FAQs:
1) When will you know if the chemotherapy is controlling the tumor growth?
Not for at least another month. I will go through another round of chemotherapy (starting 4/23) and a week or so after that I will go for a scan to see if the tumors in the liver are responding. In the meantime, Dr. S is looking for clinical signs that it might be working: decreased pain, decreased effects of the cancers, etc. The tricky part of that is that some of the side effects of chemotherapy are the same effects I go through from the cancer.
2) Can I still get a Team SMAC shirt?
Yes! We are putting in another order at the end of April, no firm date yet. If you are interested, email Kelli-girl at teamsmac1@gmail.com with the size(s). Sizes available are Youth XS-L and Adult S-5X. Cost is $15/adult shirt, $10/youth shirt, $2 or $5 for shipping (based on the size of your order).
I am still distributing some Team SMAC shirts from the first order, and the majority of the "to ship" orders went out today (a few will go out tomorrow).
3) Why do you still swim?
Think of all of the reasons exercise is good for you when you are well. Now compound that by...oh, say a million. Exercise helps boost immunity, so it also helps me stay healthy (and as an added bonus it makes me feel like I am being proactive about my well-being). The healthier I stay, the more likely it is that I stay out of the hospital and am able to continue an aggressive chemo schedule.
Oh yeah, and I enjoy it. :)
4) Why don't you ever respond to comments on your blog?
I fight the urge. Often. But I made a decision not to comment on comments (that sounds silly).
5) What do you think of Dr. S's salary? (For non-local folks, Dr. S's salary was published in our local paper.)
I could give a flying fig newton what he earns. I trust him completely and that is all that matters to me.
6) You still look good. Are you sure you have cancer?
Um, thanks. And um, yes.
Here is the thing. For the two months I knew I had cancer but no one could treat me because the diagnosis was so complicated, I went kind of batty. I mean...no one was helping me. So I decided to help myself. Gave up Diet Coke. Started juicing. Began taking handfuls of wheatgrass tablets. Changed to a primarily vegetarian diet. Continued to consume endless water. Scheduled appointments for reiki and acupuncture.
And I feel good. I really, really do. In irony of all ironies, in many ways I feel better than I have in years.
1) When will you know if the chemotherapy is controlling the tumor growth?
Not for at least another month. I will go through another round of chemotherapy (starting 4/23) and a week or so after that I will go for a scan to see if the tumors in the liver are responding. In the meantime, Dr. S is looking for clinical signs that it might be working: decreased pain, decreased effects of the cancers, etc. The tricky part of that is that some of the side effects of chemotherapy are the same effects I go through from the cancer.
2) Can I still get a Team SMAC shirt?
Yes! We are putting in another order at the end of April, no firm date yet. If you are interested, email Kelli-girl at teamsmac1@gmail.com with the size(s). Sizes available are Youth XS-L and Adult S-5X. Cost is $15/adult shirt, $10/youth shirt, $2 or $5 for shipping (based on the size of your order).
I am still distributing some Team SMAC shirts from the first order, and the majority of the "to ship" orders went out today (a few will go out tomorrow).
3) Why do you still swim?
Think of all of the reasons exercise is good for you when you are well. Now compound that by...oh, say a million. Exercise helps boost immunity, so it also helps me stay healthy (and as an added bonus it makes me feel like I am being proactive about my well-being). The healthier I stay, the more likely it is that I stay out of the hospital and am able to continue an aggressive chemo schedule.
Oh yeah, and I enjoy it. :)
4) Why don't you ever respond to comments on your blog?
I fight the urge. Often. But I made a decision not to comment on comments (that sounds silly).
5) What do you think of Dr. S's salary? (For non-local folks, Dr. S's salary was published in our local paper.)
I could give a flying fig newton what he earns. I trust him completely and that is all that matters to me.
6) You still look good. Are you sure you have cancer?
Um, thanks. And um, yes.
Here is the thing. For the two months I knew I had cancer but no one could treat me because the diagnosis was so complicated, I went kind of batty. I mean...no one was helping me. So I decided to help myself. Gave up Diet Coke. Started juicing. Began taking handfuls of wheatgrass tablets. Changed to a primarily vegetarian diet. Continued to consume endless water. Scheduled appointments for reiki and acupuncture.
And I feel good. I really, really do. In irony of all ironies, in many ways I feel better than I have in years.
Tuesday, April 10, 2012
Week 1
First week of chemo is done. I feel like I am doing quite well. The fatigue was greater on days 5-7, but seems to be improving now. The meds and acupuncture controlled the nausea so it was close to a non-issue for me.
Today was a nadir day. In cancer-speak, a nadir day is an expected low point for blood counts - red cells, white cells, and platelets. My greatest concern at this point was my white cell count. It was in the normal range, thanks in large part to a white cell booster shot I got last week. Other dangerous side effects are also monitored...so far, so few.
Next week I go for another nadir check, and if all goes well round 2 will begin on 4/23.
One potential side effect is ear ringing/hearing loss. Over the past week I noticed some transient ringing but I think it has been happening for a while, I just never paid attention!
Strong body, weak cancer cells.
- Posted using BlogPress from my iPad
Today was a nadir day. In cancer-speak, a nadir day is an expected low point for blood counts - red cells, white cells, and platelets. My greatest concern at this point was my white cell count. It was in the normal range, thanks in large part to a white cell booster shot I got last week. Other dangerous side effects are also monitored...so far, so few.
Next week I go for another nadir check, and if all goes well round 2 will begin on 4/23.
One potential side effect is ear ringing/hearing loss. Over the past week I noticed some transient ringing but I think it has been happening for a while, I just never paid attention!
Strong body, weak cancer cells.
- Posted using BlogPress from my iPad
Monday, April 9, 2012
Pandora
During my first year of college I took an intro Classics course from Professor Michael Armstrong, a man who would become one of my most trusted advisors as I progressed through undergrad. In our first course together we discussed the myth of Pandora. We covered the usual reading and interpretations of the myth, but then Professor Armstrong asked us to consider if the box was filled with evils, why would hope be in there at all? The interpretation many classics scholars had was not the warm, fuzzy one of hope being the greatest good. Rather, their interpretation was that the box was shut just in time to keep hope, the greatest evil, from escaping. (Cue my 18 year old mind being blown...)
Over the years I have come back again and again to these two interpretations of the Pandora myth. Often because these dueling interpretations marked the commencement of my love of religious interpretation and analysis, but lately more so because of the role of hope in my life.
When Cora was transferred from Glens Falls Hospital to Albany Med, a sheriff brought us down in his car, following the ambulance since we did not have a car at the hospital. During that seemingly endless ride, we had hope. At that point we did not realize how long she had been without oxygen. We were not naive, we knew that she would likely have brain damage, but we thought we would still have our girl. We had hope as we waited in the PICU hallway waiting for the doctor to come out and talk to us.
Now, hope is a word used almost daily in my life. Hope that this chemo is buying me some more time. Hope that my treatments continue to be tolerable. Hope that I will get to spend many, many more days with Kelly and my little boys (and everyone else...).
So, which interpretation of the Pandora myth is correct? I don't know. I do know that without hope, that car ride would have been intolerable. I know with hope, this cancer journey is tolerable.
Over the years I have come back again and again to these two interpretations of the Pandora myth. Often because these dueling interpretations marked the commencement of my love of religious interpretation and analysis, but lately more so because of the role of hope in my life.
When Cora was transferred from Glens Falls Hospital to Albany Med, a sheriff brought us down in his car, following the ambulance since we did not have a car at the hospital. During that seemingly endless ride, we had hope. At that point we did not realize how long she had been without oxygen. We were not naive, we knew that she would likely have brain damage, but we thought we would still have our girl. We had hope as we waited in the PICU hallway waiting for the doctor to come out and talk to us.
Now, hope is a word used almost daily in my life. Hope that this chemo is buying me some more time. Hope that my treatments continue to be tolerable. Hope that I will get to spend many, many more days with Kelly and my little boys (and everyone else...).
So, which interpretation of the Pandora myth is correct? I don't know. I do know that without hope, that car ride would have been intolerable. I know with hope, this cancer journey is tolerable.
Sunday, April 8, 2012
Acceptance vs. Approval
My minister gave me a book called The Cancer Conqueror when I was first diagnosed. I must admit to slogging through it in large part due to the writing style. But, I keep picking it back up because nestled in this oddly written book are some real gems that are worth finding.
One of them is the difference between approval, which requires judgement, and acceptance, which does not. Until a few years ago, I was very quick to judge. There was my way of what was acceptable, appropriate, and good-which I considered pretty open. But, if something did not fit-I was quick to let it be known I did not approve. My judgements were out there for myself, and for those around me, to hear.
Perhaps it was parenthood, or maturity, but I have found that acceptance makes life much more enjoyable. But, let me be clear, when I say "acceptance" I refer to accepting of those things that are morally and legally appropriate. I am not advocating coasting through life, but rather accepting those things that are worth letting go ~ the bottle of bubbles poured all over the floor right before company arrives, the person who goes 30 when the speed limit is 35 and I am running late, the older gentleman drowning out the choir with his own off-tune version of the Hallelujah chorus, the missing socks from the laundry (though, really, where do they go?), the co-worker who seems to text all day, a relationship that has naturally grown apart over time.
I think when we feel the need to approve, rather than to accept, that it limits us and those around us who are caught in the "approval cycle" (I know I used to readily involve myself in the circle of approval...judgement by the masses...) Approval and judgement limit us because they waste our precious energy on trivial matters. My main side effect from chemotherapy is fatigue. My energy is so valuable to me now that I find myself planning how to use it. I suppose that sounds odd ~ I know before I had cancer if I needed more energy, I would just dig deeper, but right now that is not an option like it was before. So, I plan. And part of that plan is not to waste a drop on approval.
One of them is the difference between approval, which requires judgement, and acceptance, which does not. Until a few years ago, I was very quick to judge. There was my way of what was acceptable, appropriate, and good-which I considered pretty open. But, if something did not fit-I was quick to let it be known I did not approve. My judgements were out there for myself, and for those around me, to hear.
Perhaps it was parenthood, or maturity, but I have found that acceptance makes life much more enjoyable. But, let me be clear, when I say "acceptance" I refer to accepting of those things that are morally and legally appropriate. I am not advocating coasting through life, but rather accepting those things that are worth letting go ~ the bottle of bubbles poured all over the floor right before company arrives, the person who goes 30 when the speed limit is 35 and I am running late, the older gentleman drowning out the choir with his own off-tune version of the Hallelujah chorus, the missing socks from the laundry (though, really, where do they go?), the co-worker who seems to text all day, a relationship that has naturally grown apart over time.
I think when we feel the need to approve, rather than to accept, that it limits us and those around us who are caught in the "approval cycle" (I know I used to readily involve myself in the circle of approval...judgement by the masses...) Approval and judgement limit us because they waste our precious energy on trivial matters. My main side effect from chemotherapy is fatigue. My energy is so valuable to me now that I find myself planning how to use it. I suppose that sounds odd ~ I know before I had cancer if I needed more energy, I would just dig deeper, but right now that is not an option like it was before. So, I plan. And part of that plan is not to waste a drop on approval.
Friday, April 6, 2012
"I'm right here, mommy."
When we were leaving the Snuggery (aka the Maternity Floor) with the twins, Kelly and I had all four kids and were attempting to leave gracefully. That didn't work. I mean, we left, but there was no grace. As we were trying to exit, I said, "Rory, where are you?" and in his quiet voice he said "I am right here, mommy."
Rory has been "right here" with me throughout my journey through motherhood. He is the one who taught me to trust my instincts, when to follow the rules and when they should be bent - how to dance that fine line between discipline and fun.
Rory walks the line between gentle and boisterous like no other, but beneath all of his boyishness is the sweetest little guy. He is so tender with Crosby and, when the mood strikes, he and Ky are the best of friends. (And when the mood doesn't strike....yikes!)
Tonight we were dying Easter eggs and Rory wanted to try to do everything himself (he did a pretty good job!) and then towards the end he decided to make his own colors by putting the same egg in different dyes to see what would happen. (Rory, after moving an egg from blue to red: Oh no, WHAT will happen now?! with a big smile on his face.) I hope he carries on with this spirit - the one eager to try something himself in his own, unique way.
Rory has been "right here" with me throughout my journey through motherhood. He is the one who taught me to trust my instincts, when to follow the rules and when they should be bent - how to dance that fine line between discipline and fun.
Rory walks the line between gentle and boisterous like no other, but beneath all of his boyishness is the sweetest little guy. He is so tender with Crosby and, when the mood strikes, he and Ky are the best of friends. (And when the mood doesn't strike....yikes!)
Tonight we were dying Easter eggs and Rory wanted to try to do everything himself (he did a pretty good job!) and then towards the end he decided to make his own colors by putting the same egg in different dyes to see what would happen. (Rory, after moving an egg from blue to red: Oh no, WHAT will happen now?! with a big smile on his face.) I hope he carries on with this spirit - the one eager to try something himself in his own, unique way.
Cuddling
I am a firm believer in my boys going to bed in their own beds. And I used to be a stickler for keeping them in their beds if they woke up in the middle of the night. Now, as the photo below shows, I don't worry so much about that. Last night our king bed had me, Rory, Ky, and Kelly, with Crosby in his crib next to the bed. Crowded? Yes. Cozy? Yes. Awesome? Yes.
Can I tell you how sweet it is to have two little boys say "cuddle, cuddle" to you and then curl up as close as they can? I know in my pre-cancer world I didn't always embrace these opportunities. In fact, I often tried to get the child in question over on Kelly's side because he could somehow sleep through the heels digging into his back and the nudging as Rory or Ky tried to inch in just a little closer.
Now, those boys make a peep and they are able to come into our bed. Scared? Dark? No idea why, just that you want to? Come on over! I am grabbing onto any chance I can to spend just another second with my kiddos ~ even if we are all sound asleep in a big heap.
Can I tell you how sweet it is to have two little boys say "cuddle, cuddle" to you and then curl up as close as they can? I know in my pre-cancer world I didn't always embrace these opportunities. In fact, I often tried to get the child in question over on Kelly's side because he could somehow sleep through the heels digging into his back and the nudging as Rory or Ky tried to inch in just a little closer.
Now, those boys make a peep and they are able to come into our bed. Scared? Dark? No idea why, just that you want to? Come on over! I am grabbing onto any chance I can to spend just another second with my kiddos ~ even if we are all sound asleep in a big heap.
Thursday, April 5, 2012
The Survivor's Network
I was told over and over again that I would not be sick, that there were meds to help me through chemo and that if what I started with didn't work, there were other options.
My port is internal ~ a few years ago it would have been external and showers would have been a pain and swimming would have been impossible.
When it comes time for radiation, I may need an internal guide. These guides used to be sewn in with no anesthesia, now patients are twilighted (if not completely knocked out) during the procedure.
All of these steps in the right direction are because of cancer survivors. Cancer survivors who made it through and said, "Yes, we are grateful to be alive, but..." This week, in particular, I am exceptionally thankful for the survivor's network. On Monday when I arrived home from my first round of chemo, I think everyone expected me to take to my bed or position myself in front of the toilet bowl (including myself). Turns out I came home feeling pretty good and have stayed feeling pretty good because I have followed the guidelines of what others found worked to keep them up and as healthy as can be.
So, today, I thank all of those patients who went before me who have made my first week of chemotherapy much less scary and nerve-wracking than I was expecting!
My port is internal ~ a few years ago it would have been external and showers would have been a pain and swimming would have been impossible.
When it comes time for radiation, I may need an internal guide. These guides used to be sewn in with no anesthesia, now patients are twilighted (if not completely knocked out) during the procedure.
All of these steps in the right direction are because of cancer survivors. Cancer survivors who made it through and said, "Yes, we are grateful to be alive, but..." This week, in particular, I am exceptionally thankful for the survivor's network. On Monday when I arrived home from my first round of chemo, I think everyone expected me to take to my bed or position myself in front of the toilet bowl (including myself). Turns out I came home feeling pretty good and have stayed feeling pretty good because I have followed the guidelines of what others found worked to keep them up and as healthy as can be.
So, today, I thank all of those patients who went before me who have made my first week of chemotherapy much less scary and nerve-wracking than I was expecting!
Wednesday, April 4, 2012
SMAC sorters
The Team SMAC shirts are in and sorted ~ and here is a picture of the wonderful sorters (sans Tim, our heavy box hauler and photo taker extraordinaire) in our great shirts.
Things we learned tonight:
1) One spreadsheet is complicated.
2) Two spreadsheets are very complicated.
But, we pulled through and got done before midnight, which was lovely.
For those of you who are interested in a shirt, but didn't order one, let me know. Rumor has it that another order will be going in late in the month.
As for me, the first round of receiving chemo is done. The side effects have been mild, so far, but I am also following my orders from Dr. S to a T. Rumor has it that this weekend might be a little rougher, and Days 10-14 are the highest infection-risk days (so if I go into a cave, I'll be back out shortly).
Tomorrow I get my white cell boosting shot and venture to Reiki for the first time, and then back to Acupuncture on Friday.
Tuesday, April 3, 2012
Picture
Each night Kelly and I would take a twin to wake up with. The night before Cora stopped breathing, she was "my" twin for the night. I was such a bitch about it at first. I felt like I just fell asleep when she would wake up. But then at her 4 AM feeding, something changed. I remember just relaxing with her for a little while and enjoying holding her. She was WIDE awake and I was just talking to her...foolish little songs and things you say to babies. I don't really know how long I sat with her or if she fell asleep in my arms (I think she did...I hope she did), but I savored those moments holding her with her eyes wide open looking around. Suddenly it wasn't so bad that she didn't fall right to sleep.
That night, I took the photo above. I had no idea it would be the last picture I ever took of my baby girl.
Monday, April 2, 2012
This one might be a little Oprah-esque, I blame the steriods.
I think, on occasion, most people think: "What would I do if I knew I was going to die?" I always thought I'd rent a Winnebago, hop in with Kelly and the kids and go.
Turns out that I have absolutely no interest in doing that. I have said it before, I just want to keep on living my wonderful life. Wonderful life, you ask, how can that be with the devastation upon devastation that has reached our family? Life carries on ~ especially when surrounded by three very, very busy (and boisterous) little boys! I know that this blog is often an outlet for some difficult thoughts, but that is one of its many purposes - an outlet for me. If I had to give percentages, I would say that I spend 95% of each day quite content, and a mere 5% quite sad, frustrated, or angry. Given the circumstances, I'd say that is pretty good.
Anyhow, where I am going with this...
Think about your life. Think about what you would change if you knew you only had a short time left. And no cheating ~ no "wishful" fixes. Real things. Now, think about what you would keep exactly the same. Savor those thoughts for a moment (or ten...).
Now, for those things you want to change ~ big or small. Change them. Ask that girl to marry you (ahem...you know who you are!); build or rebuild those relationships you want to be stronger, let go of the ones you don't; focus on the parts of your job you like if you are in a job you don't like and also work to find something different; stop comparing yourself to others. Well, except in one way...if I can be content 95% of the day given what I have been through and am going through, I hope that you can to.
[Quick aside: Chemo day 1 went well ~ was at the cancer center a total of 5 hours. I have felt good all day, even did a full swim practice tonight (yippee for legal steroids), and am about to go to bed only because it is 10:15 and I should go to bed. Otherwise tomorrow will be very, very long! Thanks to everyone who checked in on me today.]
- Posted using BlogPress from my iPad
Turns out that I have absolutely no interest in doing that. I have said it before, I just want to keep on living my wonderful life. Wonderful life, you ask, how can that be with the devastation upon devastation that has reached our family? Life carries on ~ especially when surrounded by three very, very busy (and boisterous) little boys! I know that this blog is often an outlet for some difficult thoughts, but that is one of its many purposes - an outlet for me. If I had to give percentages, I would say that I spend 95% of each day quite content, and a mere 5% quite sad, frustrated, or angry. Given the circumstances, I'd say that is pretty good.
Anyhow, where I am going with this...
Think about your life. Think about what you would change if you knew you only had a short time left. And no cheating ~ no "wishful" fixes. Real things. Now, think about what you would keep exactly the same. Savor those thoughts for a moment (or ten...).
Now, for those things you want to change ~ big or small. Change them. Ask that girl to marry you (ahem...you know who you are!); build or rebuild those relationships you want to be stronger, let go of the ones you don't; focus on the parts of your job you like if you are in a job you don't like and also work to find something different; stop comparing yourself to others. Well, except in one way...if I can be content 95% of the day given what I have been through and am going through, I hope that you can to.
[Quick aside: Chemo day 1 went well ~ was at the cancer center a total of 5 hours. I have felt good all day, even did a full swim practice tonight (yippee for legal steroids), and am about to go to bed only because it is 10:15 and I should go to bed. Otherwise tomorrow will be very, very long! Thanks to everyone who checked in on me today.]
- Posted using BlogPress from my iPad
Sunday, April 1, 2012
Mark
On Thursday morning I got the phone call that everything was lined up for chemo and that I could start on Monday. Then, late in the day on Thursday, Dr. S called to say he had talked to Dr. B. Yes, that Dr. B. She suggested adding radiation to my treatment regimen. Dr. S told me that he spoke with Alex (I should call him Dr. Frank, but he was a swimming buddy first...) and they decided not to follow Dr. B's suggestion because the level of toxicity would be too great. We talked a little, and I was in agreement, but then after I got off the phone I started thinking: What if Dr. S and Alex were playing it too safe? My gut told me they were right, but this...this is a time where I needed confirmation of that.
Thursday evening I emailed, Mark. Mark is the director of the Norris Cotton Cancer center at Dartmouth. I told him the two sides and what my gut told me, and asked him for his help. Within 48 hours he got back to me (supporting Dr. S) and making it so that when I go tomorrow morning to finally start chemotherapy, I am completely confident that the treatment course is the best possible option.
So, needless to say, based on the past few days alone, you can tell Mark is awesome. But he has been with me from the get-go. And I just typed (and then deleted) a huge list of the ways he has helped me out through this journey, but the nitty-gritty doesn't tell what needs to be said ~ whenever I had a doubt or an issue through the (very long) diagnosis stage, Mark is the one who alleviated it.
Now...the kicker. Mark has never met me. He doesn't have my billing address or insurance information. He wouldn't know me and I wouldn't know him if we passed on the street. He got my information because he is a family friend. He helped me because this is simply the type of man he is. I will be ever thankful for receiving his first "opening salvo" email because he has proven to be a constant when I needed one the most.
Thursday evening I emailed, Mark. Mark is the director of the Norris Cotton Cancer center at Dartmouth. I told him the two sides and what my gut told me, and asked him for his help. Within 48 hours he got back to me (supporting Dr. S) and making it so that when I go tomorrow morning to finally start chemotherapy, I am completely confident that the treatment course is the best possible option.
So, needless to say, based on the past few days alone, you can tell Mark is awesome. But he has been with me from the get-go. And I just typed (and then deleted) a huge list of the ways he has helped me out through this journey, but the nitty-gritty doesn't tell what needs to be said ~ whenever I had a doubt or an issue through the (very long) diagnosis stage, Mark is the one who alleviated it.
Now...the kicker. Mark has never met me. He doesn't have my billing address or insurance information. He wouldn't know me and I wouldn't know him if we passed on the street. He got my information because he is a family friend. He helped me because this is simply the type of man he is. I will be ever thankful for receiving his first "opening salvo" email because he has proven to be a constant when I needed one the most.
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