The other night, around midnight, Kyan woke up. Kelly went to check on him as I remained fast asleep. In the morning Kelly told me Ky kept saying "See Mommy, See Mommy." To settle him, Kelly brought him in to see me (sleeping) and then put him back to bed.
A few nights later I was watching a movie with Rory and he started to doze off. I turned off the light and started to sing him his nighttime song. Since there was no nightlight, the room was very dark. Rory snuggled in close and whispered that he was scared and he couldn't see me because it was dark. I told him it was okay to be scared, but I was right there and held his hand.
I worry so much about how the little boys will cope if I die. They have the best daddy who will do everything in his power to help them, and four wonderful grandparents they adore and who adore them. But it is not the same as having me there...they will not be able to see me or feel me for comfort. I will not be a tangible part of their daily lives, and I am sad that they will not have their mommy there to hold them, cheer them on, comfort them, and celebrate with them as they grow.
Saturday, March 31, 2012
Friday, March 30, 2012
Keeping Up
I was raised to write thank you notes to people, to respond when people reach out, to let people know how much I appreciate the things that they have done.
Yet right now I am horribly behind on such things. I still have a gift for the nurses (Snuggettes!) who took care of the twins and me. I have a list of over one hundred people I need to write thank you notes to (and I have made a pretty solid dent in the entire list). I have emails and Facebook messages that I am slowly responding to, but some I received over a month ago...
Don't worry, mom, I am not trying to make a blog post as a stand in! (I think I can actually hear her sigh of relief.) :)
It is hard keeping up ~ especially when my primary focus is on spending time with everyone. But I am trying to catch up (ever so slowly). In the meantime, I just want everyone to know how much I appreciate all of the cards, emails, gifts, flowers, food, socks (!), and other wonderful kindnesses. My lack of grateful communication is not meant to be a slight. In fact, nothing could be further from the truth.
Yet right now I am horribly behind on such things. I still have a gift for the nurses (Snuggettes!) who took care of the twins and me. I have a list of over one hundred people I need to write thank you notes to (and I have made a pretty solid dent in the entire list). I have emails and Facebook messages that I am slowly responding to, but some I received over a month ago...
Don't worry, mom, I am not trying to make a blog post as a stand in! (I think I can actually hear her sigh of relief.) :)
It is hard keeping up ~ especially when my primary focus is on spending time with everyone. But I am trying to catch up (ever so slowly). In the meantime, I just want everyone to know how much I appreciate all of the cards, emails, gifts, flowers, food, socks (!), and other wonderful kindnesses. My lack of grateful communication is not meant to be a slight. In fact, nothing could be further from the truth.
Thursday, March 29, 2012
Brownies
Can I tell you how frequently the topic of pot brownies has come up since my cancer diagnosis?
It all started with two youth group friends, who will remain nameless to protect their identities, who talked to each other about what they could do to help. They thought "pot brownies" (for those who don't know, pot - I mean, medical marijuana - helps with the chemo side effects) would be a great idea. There was just one problem: they had no idea where to get the pot. (I run with a wild crowd.)
A few weeks later at Bunco I am regaling the ladies with the pot brownie story and I kid you not, this led to a in-depth discussion of where pot could be obtained (again, no real answers...I hang out with the wrong people to try to be rebellious with). Perhaps the best part of that conversation was that then, instead of the Bunco ladies making these hypothetical pot brownies themselves, they were going to ship the pot to my youth group friends. Because you know, shipping pot through the mail is a good idea.
Which leads me to today. A friend posted this picture on my Facebook wall:
This is an item that was for sale at the Dana Farber cafeteria....it just makes me laugh. Had I seen one when I was there, I would have bought one just for kicks.
Now, a disclaimer. Many, many lovely readers of this blog - both who I know and who wish to remain anonymous - sent me some amazing socks after my sock post. Please do NOT send me any pot brownies!
It all started with two youth group friends, who will remain nameless to protect their identities, who talked to each other about what they could do to help. They thought "pot brownies" (for those who don't know, pot - I mean, medical marijuana - helps with the chemo side effects) would be a great idea. There was just one problem: they had no idea where to get the pot. (I run with a wild crowd.)
A few weeks later at Bunco I am regaling the ladies with the pot brownie story and I kid you not, this led to a in-depth discussion of where pot could be obtained (again, no real answers...I hang out with the wrong people to try to be rebellious with). Perhaps the best part of that conversation was that then, instead of the Bunco ladies making these hypothetical pot brownies themselves, they were going to ship the pot to my youth group friends. Because you know, shipping pot through the mail is a good idea.
Which leads me to today. A friend posted this picture on my Facebook wall:
Now, a disclaimer. Many, many lovely readers of this blog - both who I know and who wish to remain anonymous - sent me some amazing socks after my sock post. Please do NOT send me any pot brownies!
Wednesday, March 28, 2012
Outlier
Dr. Chan (DF) called this afternoon [within an hour of me calling her]. What the doctors at DF have given me for a diagnosis is their best conclusion based on the information they have, but this diagnosis is not a set in stone, guaranteed to last diagnosis. It is the best conclusion they could draw based on the conflicting results from the battery of tests, scans, etc. that they had. Comforting, eh?
Their diagnosis is that cancer in my liver and the cancer in my cervix are two separate processes (cancers), but the cancer in my liver is more advanced than previously thought. The tumors in my liver are highly active (3 on a scale of 1-3) neuroendocrine tumors. The cancer in my cervix is (still) advanced endometrial adenocarcinoma.
They are recommending a double-dose chemotherapy regimen which will go in 3 week cycles. Days 1-3 are chemo, day 4 is a white blood cell count boosting shot, then off for days 5-21, except for weekly bloodwork and check-ins. I will go through 2 cycles of that (6 weeks) and then will undergo a scan to see if it is working. If it is, we carry on as long as I can take it (typically about 6 cycles in all). If not, we adjust and try another combination.
I spoke with Dr. S a couple of times today as well, with my foremost question being: "Do you trust this conclusion and treatment path?" He does, and since I trust him fully, I will start treatment next week, as long as all of the insurance approvals and scheduling can work out.
The big question ~ prognosis: It is not good, about what it was before (months).
One of the most interesting math topics (to me) is outliers. Those pieces of data that do not fit in with the vast majority of data. I plan to be an outlier. And to be clear, one that is FAR to the right on the number line.
Their diagnosis is that cancer in my liver and the cancer in my cervix are two separate processes (cancers), but the cancer in my liver is more advanced than previously thought. The tumors in my liver are highly active (3 on a scale of 1-3) neuroendocrine tumors. The cancer in my cervix is (still) advanced endometrial adenocarcinoma.
They are recommending a double-dose chemotherapy regimen which will go in 3 week cycles. Days 1-3 are chemo, day 4 is a white blood cell count boosting shot, then off for days 5-21, except for weekly bloodwork and check-ins. I will go through 2 cycles of that (6 weeks) and then will undergo a scan to see if it is working. If it is, we carry on as long as I can take it (typically about 6 cycles in all). If not, we adjust and try another combination.
I spoke with Dr. S a couple of times today as well, with my foremost question being: "Do you trust this conclusion and treatment path?" He does, and since I trust him fully, I will start treatment next week, as long as all of the insurance approvals and scheduling can work out.
The big question ~ prognosis: It is not good, about what it was before (months).
One of the most interesting math topics (to me) is outliers. Those pieces of data that do not fit in with the vast majority of data. I plan to be an outlier. And to be clear, one that is FAR to the right on the number line.
Tuesday, March 27, 2012
Happy Six Months, Crosby!
That morning was so wonderful ~ everyone was so excited and things went well. Cora Lily was born first, and minutes later Crosby Robert joined us. Because they were born via c-section, I was the last one in the room to see them, but it was worth the wait. They were both absolutely perfect. Because I couldn't really move much other than my right arm and turn my head, I kept asking Kelly and the nurses to hold them in positions so I could see them. And I couldn't really tell who was who, so I kept having to ask...talk about being a slacker twin parent! Though now when I look at pictures I have no idea how I couldn't tell them apart...
From the operating room, one of my favorite moments was when Kelly was holding Cora and one of the nurses came over and popped Crosby into his arms and said something funny to him, like "Welcome to reality." Kelly's eyes got huge for about 10 seconds, and then he settled right in with both of them.
It is hard to believe that wonderful morning was six months ago and at the same time it is hard to believe that Crosby is already six months old. He is adorable and happy and enamored with the antics of his big brothers. Kyan likes being silly near him and Rory entertains him for long stretches of time with songs and toys. Crosby has two very sharp teeth and an uncanny ability to roll to the right, while refusing to do the same to the left. And his smile, it is huge and charming and melts my heart each time I see it. It is amazing to me how much joy, peace, and love he has brought to us already. Happy Six Months, Crosby!
Monday, March 26, 2012
Mornings
I am not, by any stretch of the imagination, a morning person. To cope with this, I started each day with a Diet Coke. I was pretty sure the "nectar" the Greek gods consumed on Mount Olympus was, in fact, Diet Coke. But I have now given up Diet Coke. Eight days. And here's the thing that I really don't want to admit, but am going to...I feel better. Shhhhhhhhhhhhh...DON'T. TELL. ANYONE.
Still, I am not a morning person. Starting the day with water or a concoction from the juicer instead of Diet Coke has not made it worse, but it certainly has not made it better. I need cajoling to get up ~ and even then, cheerful is not my natural first emotion.
The same cannot be said of Ky. That child LOVES the morning. He wakes up happy as could be - filled with smiles, dancing, and hugs. He is ready to play (cars, cars!) and rarely interested in watching more than 5 or 10 minutes of a show so I can grab a few more minutes of sleep. I suppose if one has to have an early riser, it is good to have a happy one.
Rory is more like me. He wakes up and shuffles to wherever he is going (usually to me, still in bed, because Kelly is kind enough to get up with Ky), then sits in "his spot" on the couch to drink his milk while he wakes up. He eases into mornings. Not a thing wrong with that, in my opinion.
Now Crosby...he is still a mystery. Some mornings he wakes up cooing and smiley, content to hang out in his bouncer for a while before having his bottle. Other mornings all my neighbors probably know he is awake. He wakes up fast and loud. Really loud until a bottle reaches him. I am curious to know which side will "win," as he gets older. I have a feeling he will be a little bit more like me. Because, until 8 days ago, I would have completely understood being really loud until I had my Diet Coke.
Still, I am not a morning person. Starting the day with water or a concoction from the juicer instead of Diet Coke has not made it worse, but it certainly has not made it better. I need cajoling to get up ~ and even then, cheerful is not my natural first emotion.
The same cannot be said of Ky. That child LOVES the morning. He wakes up happy as could be - filled with smiles, dancing, and hugs. He is ready to play (cars, cars!) and rarely interested in watching more than 5 or 10 minutes of a show so I can grab a few more minutes of sleep. I suppose if one has to have an early riser, it is good to have a happy one.
Rory is more like me. He wakes up and shuffles to wherever he is going (usually to me, still in bed, because Kelly is kind enough to get up with Ky), then sits in "his spot" on the couch to drink his milk while he wakes up. He eases into mornings. Not a thing wrong with that, in my opinion.
Now Crosby...he is still a mystery. Some mornings he wakes up cooing and smiley, content to hang out in his bouncer for a while before having his bottle. Other mornings all my neighbors probably know he is awake. He wakes up fast and loud. Really loud until a bottle reaches him. I am curious to know which side will "win," as he gets older. I have a feeling he will be a little bit more like me. Because, until 8 days ago, I would have completely understood being really loud until I had my Diet Coke.
Sunday, March 25, 2012
Headstone
Kelly and I have been working on ordering a headstone since shortly after Cora passed away. The first time we went and stayed about 20 minutes ~ neither of us were ready for that. But, Dan, the man helping us, asked if we were sure we wanted to do a family headstone. He reasoning, which was very kindly said, was that we never knew how things would change as time went on. Without hesitation, we both said that we wanted to do the full headstone.
Over the past few months, I have gone to see Dan on and off to work on the headstone. Kelly and I finally settled on what we wanted, but there is one problem...it is a full family headstone ~ for Cora, me, and Kelly.
If I die from this (these) cancer(s), Kelly and I will have had about a decade together ~ a decade that adjectives cannot even describe because it is just that good. But, he is young and he may find someone else, someone he can spend much longer with ~ someone who dances with him into old age and years upon years of happy memories. And this someone, she could become "mommy" to my boys. And I sob writing that, because I can't stand the thought of it. How could someone else be mommy to Rory, Ky, and Crosby? How could someone else be Kelly's wife?
I can hear your voices now ~ you will not be replaced, you will be remembered and loved. I know that. I truly do, and someday I will write more about "my replacement," but not tonight.
Kelly is noble and kind and sweet and of course he said no when I suggested leaving "his" part of the headstone blank. He said no because right now, that doesn't feel like the right thing to do. That doing that would break both of our hearts. Because right now, we still have hope.
Over the past few months, I have gone to see Dan on and off to work on the headstone. Kelly and I finally settled on what we wanted, but there is one problem...it is a full family headstone ~ for Cora, me, and Kelly.
If I die from this (these) cancer(s), Kelly and I will have had about a decade together ~ a decade that adjectives cannot even describe because it is just that good. But, he is young and he may find someone else, someone he can spend much longer with ~ someone who dances with him into old age and years upon years of happy memories. And this someone, she could become "mommy" to my boys. And I sob writing that, because I can't stand the thought of it. How could someone else be mommy to Rory, Ky, and Crosby? How could someone else be Kelly's wife?
I can hear your voices now ~ you will not be replaced, you will be remembered and loved. I know that. I truly do, and someday I will write more about "my replacement," but not tonight.
Kelly is noble and kind and sweet and of course he said no when I suggested leaving "his" part of the headstone blank. He said no because right now, that doesn't feel like the right thing to do. That doing that would break both of our hearts. Because right now, we still have hope.
Friday, March 23, 2012
6:57 pm on a Friday
There were a great many phone calls today between doctor folk and me, which I won't rehash. I will only tell you about the last one, which was the most important one.
Dr. O from Dana Farber (the fellow who works with Dr. Chan) called to let me know the tumor board did not review my case yesterday because the slides from the liver tissue tests were not yet complete (the pathology). They were completed by this evening.
In watered down terms, the slides showed that my liver tissue reacted to a test that checked for a connection between the liver tumors and the cervical tumors. This, on its own, would indicate that the cancer in my liver is metastasized cervical cancer. However, the blood tests, urine tests, and OctreoScan produced results that conflict with a diagnosis of metastasized cervical cancer. That being said, in cancer diagnosis - pathology rules, and the pathology is not in my favor right now.
What does this mean? It means that the folks at Dana Farber will now have an actual tumor board to discuss me early next week. At that meeting they will try to sort through the piles of murky information they have to come up with a diagnosis and treatment course. They will talk to both Dr. S and to me, and we will go from there.
In talking to Dr. S today, I did tell him that if we weren't doing something for treatment, that I was just showing up Wednesday and having SOMETHING injected into this port. He was amused...I think.
Dr. O from Dana Farber (the fellow who works with Dr. Chan) called to let me know the tumor board did not review my case yesterday because the slides from the liver tissue tests were not yet complete (the pathology). They were completed by this evening.
In watered down terms, the slides showed that my liver tissue reacted to a test that checked for a connection between the liver tumors and the cervical tumors. This, on its own, would indicate that the cancer in my liver is metastasized cervical cancer. However, the blood tests, urine tests, and OctreoScan produced results that conflict with a diagnosis of metastasized cervical cancer. That being said, in cancer diagnosis - pathology rules, and the pathology is not in my favor right now.
What does this mean? It means that the folks at Dana Farber will now have an actual tumor board to discuss me early next week. At that meeting they will try to sort through the piles of murky information they have to come up with a diagnosis and treatment course. They will talk to both Dr. S and to me, and we will go from there.
In talking to Dr. S today, I did tell him that if we weren't doing something for treatment, that I was just showing up Wednesday and having SOMETHING injected into this port. He was amused...I think.
Thursday, March 22, 2012
No Word
I did not get a call from Dana Farber today.
I am frustrated, annoyed, and angry.
Limbo sucks.
Tomorrow I will chase everyone I need to chase down.
Hopefully there will be some answers.
I need a fucking plan.
I am frustrated, annoyed, and angry.
Limbo sucks.
Tomorrow I will chase everyone I need to chase down.
Hopefully there will be some answers.
I need a fucking plan.
Wednesday, March 21, 2012
Heart Will
This isn't good. I am tears after typing the post name.
Kelli-girl sent me this message last night: "Grief counselors have a phrase for the memories (letters, videos, etc.) that terminally ill people leave behind for their families: heart wills."
I have thought endlessly about my Heart Will. What is most important to let my children, Kelly, my parents, my friends, my family know? What stories do I want to be sure my children know that they may not hear from others? How can a Heart Will ever possibly let my boys know how deeply I love them and how each one of them changed my life for the better?
I have started working on my Heart Will. Last weekend my friend Deb arranged for me to do an audio interview with one of her old college friends, Kathie, who does this professionally. Kathie and I emailed back and forth several times before our recording session - trying to hone in on what I wanted to say in about 35 minutes. Thirty-five minutes. It, like most everything lately, felt like not nearly enough time.
We also did a set of family pictures at Crandall Park ~ a short notice, thank goodness it was nice weather, Tarah (our photographer) was available~ let's go for it set of pictures. They are lovely and will be treasured as they are the last set of pictures we will have done before treatment begins.
I write mental letters to "my people" in my head, but I haven't yet been able to actually write one. I will, soon. Maybe after tomorrow, when I will (knock on wood) hear what Dana Farber has settled on in terms of a diagnosis and treatment course, maybe when it seems a little more real. Because right now, it still doesn't feel that way.
Kelli-girl sent me this message last night: "Grief counselors have a phrase for the memories (letters, videos, etc.) that terminally ill people leave behind for their families: heart wills."
I have thought endlessly about my Heart Will. What is most important to let my children, Kelly, my parents, my friends, my family know? What stories do I want to be sure my children know that they may not hear from others? How can a Heart Will ever possibly let my boys know how deeply I love them and how each one of them changed my life for the better?
I have started working on my Heart Will. Last weekend my friend Deb arranged for me to do an audio interview with one of her old college friends, Kathie, who does this professionally. Kathie and I emailed back and forth several times before our recording session - trying to hone in on what I wanted to say in about 35 minutes. Thirty-five minutes. It, like most everything lately, felt like not nearly enough time.
We also did a set of family pictures at Crandall Park ~ a short notice, thank goodness it was nice weather, Tarah (our photographer) was available~ let's go for it set of pictures. They are lovely and will be treasured as they are the last set of pictures we will have done before treatment begins.
I write mental letters to "my people" in my head, but I haven't yet been able to actually write one. I will, soon. Maybe after tomorrow, when I will (knock on wood) hear what Dana Farber has settled on in terms of a diagnosis and treatment course, maybe when it seems a little more real. Because right now, it still doesn't feel that way.
Tuesday, March 20, 2012
Steadfast
I keep thinking it must be exhausting to be one of my "gatekeepers." My gatekeepers: Kelly, my parents, Kelli-girl; the people who somehow have to decide what to tell me or what not to tell me based on what other people tell them or ask them. Let me put this out there: tell me anything, ask me anything. Whether I have 8 months or 8 years, I can handle it, and really, if we don't talk about it now, when will we?
Ah, got that off my chest.
Turns out yesterday was the good surgery day. Today it hurts and I am tired. So I am going to take the "easy" way out and share with you the words from part of a sermon that my minister, John Barclay, gave on the day Crosby was baptised. The whole sermon is well worth reading (www.fpcgf.org - Speaking the Truth We Know), but this section, in particular, spoke to me.
"But one day Sara walked to front of the sanctuary and said to the congregation: "I want to tell you something: I have AIDS and it will kill me. I do not have long now. I know you are praying for me, and I am grateful. You may not know this, but in the early church, those who were sick and dying would often stand before the congregation, not only to receive prayers, but give testimony. That is why I am here. I hate what has happened to me; but I want you to know that I trust in Jesus Christ. He also suffered and has promised that suffering will not have the last word. My faith is not shaken, and I am not afraid. When it comes to you, and suffering will come to you, remember that I was here, and remember that Jesus is stronger than suffering. Do not be afraid.""
I am not as steadfast as Sara. My faith is shaken, I rage and I question, but it is still there in its somewhat fragile form.
Ah, got that off my chest.
Turns out yesterday was the good surgery day. Today it hurts and I am tired. So I am going to take the "easy" way out and share with you the words from part of a sermon that my minister, John Barclay, gave on the day Crosby was baptised. The whole sermon is well worth reading (www.fpcgf.org - Speaking the Truth We Know), but this section, in particular, spoke to me.
"But one day Sara walked to front of the sanctuary and said to the congregation: "I want to tell you something: I have AIDS and it will kill me. I do not have long now. I know you are praying for me, and I am grateful. You may not know this, but in the early church, those who were sick and dying would often stand before the congregation, not only to receive prayers, but give testimony. That is why I am here. I hate what has happened to me; but I want you to know that I trust in Jesus Christ. He also suffered and has promised that suffering will not have the last word. My faith is not shaken, and I am not afraid. When it comes to you, and suffering will come to you, remember that I was here, and remember that Jesus is stronger than suffering. Do not be afraid.""
I am not as steadfast as Sara. My faith is shaken, I rage and I question, but it is still there in its somewhat fragile form.
Monday, March 19, 2012
Port (sorry, not the post-dinner beverage)
Today I had my port put in...on my port side! (Boating humor...my husband will be amused.)
When I went for my consult last week my surgeon, Dr. D'A, said to me "This is the type of surgery that either gets done in 25 minutes or surgeons get down on their knees and pray and it ends up taking an hour." Mine took an hour and a half. Go me. I think I just wanted a longer nap.
[Skip to the next paragraph if you don't want the heebie jeebies.] What really happened was that the catheter for the port is usually threaded through a vein in the arm. That path was too tight, so they had to thread it up into my neck. Sounds worse than it is. I am hoping it settles in a little bit as time passes. Or that wearing neckerchiefs makes a style comeback, because you all know how stylish I am.
Recovery for about an hour, then home. I tried valiantly to take a nap this afternoon, but no luck. I felt good enough to do all the stuff I usually do by late afternoon. Even went for a walk tonight with my neighbor.
Rory hasn't even noticed the bandages, or my oompa-loompa orange shading which I get to keep for a few days because showering is off limits for a bit. Kyan has noticed, traced the catheter from port to where it cannot be seen with his finger, and then tried to peel off the bandage. He is a very helpful little 2-year old. Crosby must think it is his job to be held by others while mommy talks to him since 5 out of the last 7 days I haven't been able to hold him much. Good thing he just likes to have chats while he reclines in his bouncer.
So, the port is in. Now all of the oncologists and pathologists in my world just have to agree so it can be put to use.
When I went for my consult last week my surgeon, Dr. D'A, said to me "This is the type of surgery that either gets done in 25 minutes or surgeons get down on their knees and pray and it ends up taking an hour." Mine took an hour and a half. Go me. I think I just wanted a longer nap.
[Skip to the next paragraph if you don't want the heebie jeebies.] What really happened was that the catheter for the port is usually threaded through a vein in the arm. That path was too tight, so they had to thread it up into my neck. Sounds worse than it is. I am hoping it settles in a little bit as time passes. Or that wearing neckerchiefs makes a style comeback, because you all know how stylish I am.
Recovery for about an hour, then home. I tried valiantly to take a nap this afternoon, but no luck. I felt good enough to do all the stuff I usually do by late afternoon. Even went for a walk tonight with my neighbor.
Rory hasn't even noticed the bandages, or my oompa-loompa orange shading which I get to keep for a few days because showering is off limits for a bit. Kyan has noticed, traced the catheter from port to where it cannot be seen with his finger, and then tried to peel off the bandage. He is a very helpful little 2-year old. Crosby must think it is his job to be held by others while mommy talks to him since 5 out of the last 7 days I haven't been able to hold him much. Good thing he just likes to have chats while he reclines in his bouncer.
So, the port is in. Now all of the oncologists and pathologists in my world just have to agree so it can be put to use.
Sunday, March 18, 2012
Mystery
The mystery is gone with Kelly and me.
You know how early in a relationship you are never in the bathroom at the same time, but then eventually that wall comes down (like when you live in a house with one bathroom...)? But then you still have a bunch of other things that "keep the mystery."
Until you decide to have children. And then it really feels like there is no mystery left at all. (While we are at it, childbirth really leads to no modesty among others at all. I remember thinking my mom went to work and helped deliver babies and then spent her day rocking them. Man, was I wrong!)
Turns out childbirth wasn't the end of the mystery. Since my cancer diagnosis, Kelly has travelled with me to almost every appointment. At just about every single one they ask me to describe in detail all sorts of symptoms ~ in particular GI symptoms.
At this point, I think Kelly could answer that question for me. But...we still had one bit of mystery left. My weight. It was never out there. Cut to a rambling appointment with Dr. S. Out of the CLEAR BLUE he says, and "I see here you have lost 5 pounds this week going from xxx to xxx."
WHAT? DUDE...YOU DID NOT JUST SAY THAT!
(And yes, I did just use the word "dude" to describe someone who is really not well described by that term...)
So, I have been on the hunt for more mystery. And here...no joke...was my first thought: "He doesn't know I won a costume prize my senior year South High Marathon Dance for dressing up like a palm tree with another classmate and holding a hammock between us."
I think I need to accept the mystery is gone.
You know how early in a relationship you are never in the bathroom at the same time, but then eventually that wall comes down (like when you live in a house with one bathroom...)? But then you still have a bunch of other things that "keep the mystery."
Until you decide to have children. And then it really feels like there is no mystery left at all. (While we are at it, childbirth really leads to no modesty among others at all. I remember thinking my mom went to work and helped deliver babies and then spent her day rocking them. Man, was I wrong!)
Turns out childbirth wasn't the end of the mystery. Since my cancer diagnosis, Kelly has travelled with me to almost every appointment. At just about every single one they ask me to describe in detail all sorts of symptoms ~ in particular GI symptoms.
At this point, I think Kelly could answer that question for me. But...we still had one bit of mystery left. My weight. It was never out there. Cut to a rambling appointment with Dr. S. Out of the CLEAR BLUE he says, and "I see here you have lost 5 pounds this week going from xxx to xxx."
WHAT? DUDE...YOU DID NOT JUST SAY THAT!
(And yes, I did just use the word "dude" to describe someone who is really not well described by that term...)
So, I have been on the hunt for more mystery. And here...no joke...was my first thought: "He doesn't know I won a costume prize my senior year South High Marathon Dance for dressing up like a palm tree with another classmate and holding a hammock between us."
I think I need to accept the mystery is gone.
Saturday, March 17, 2012
Hypervigilance
Poor Crosby. He is going to be sleeping in our room until he is 18.
Even before we knew that Cora's death would be classified as SIDS, I was on the phone with our pediatrician. WHAT. ABOUT. CROSBY?!?! Thankfully, the nurse who answered my call was Mrs. Lockwood, a longtime family friend. She arranged for me to bring him into see Dr. Wright. Of course, what I didn't think about at the time, was that the doctors were already pouring over the records they had to see if there was any warning signs ~ anything that could tell us what happened to her, and if Crosby was at risk. Dr. Wright examined Crosby and had me bring him for an echo cardiogram to check for a specific issue, and thankfully Crosby got a clean bill of health.
But the terrifying thing is, in cases like Cora's, where her death is classified as a SIDS death, but the "usual culprits" are not in play, researchers think it may be related to an unknown defect. Because it is unknown, they don't know if it is genetic or from something the baby was exposed to in the womb.
Professionals call it hypervigilance ~ I call it sanity. I think I put my hand on his chest 20 times a day while he is sleeping. Kelly sleeps closer to him than I do, so I wake Kelly in the middle of the night to check on Crosby if I don't hear him. (He is a loud sleeper for being a baby!) But I am finally starting to relax a little more around Crosby. We hired a babysitter for the first time since October last weekend and I didn't worry at all about him (in large part because our babysitter was fantastic). And I am simply able to enjoy him, and all his smiley, happy sweetness, more and more each day.
Even before we knew that Cora's death would be classified as SIDS, I was on the phone with our pediatrician. WHAT. ABOUT. CROSBY?!?! Thankfully, the nurse who answered my call was Mrs. Lockwood, a longtime family friend. She arranged for me to bring him into see Dr. Wright. Of course, what I didn't think about at the time, was that the doctors were already pouring over the records they had to see if there was any warning signs ~ anything that could tell us what happened to her, and if Crosby was at risk. Dr. Wright examined Crosby and had me bring him for an echo cardiogram to check for a specific issue, and thankfully Crosby got a clean bill of health.
But the terrifying thing is, in cases like Cora's, where her death is classified as a SIDS death, but the "usual culprits" are not in play, researchers think it may be related to an unknown defect. Because it is unknown, they don't know if it is genetic or from something the baby was exposed to in the womb.
Professionals call it hypervigilance ~ I call it sanity. I think I put my hand on his chest 20 times a day while he is sleeping. Kelly sleeps closer to him than I do, so I wake Kelly in the middle of the night to check on Crosby if I don't hear him. (He is a loud sleeper for being a baby!) But I am finally starting to relax a little more around Crosby. We hired a babysitter for the first time since October last weekend and I didn't worry at all about him (in large part because our babysitter was fantastic). And I am simply able to enjoy him, and all his smiley, happy sweetness, more and more each day.
Dana Farber Day
Turns out the folks at Dana Farber are, in fact, mortals.
Recap of the day below.
Doc #1, aka Dr. B - gyn oncologist
I am not going to name Dr. B by her full name because I am not a fan. Not. At. All.
She came and showed me the two pathology reports that the pathologists at Dana Farber (henceforth, DF) generated. The cervical analysis matched what we knew, the liver did not. She is convinced the pathologist at DF is correct and staged me back to cervical cancer 4B. In other words, the cancer in the liver is metastasized cervical cancer, not carcinoid (see the Reality entry for why this is bad news). I attempted to ask questions about her diagnosis based on what Dr. S and Dr. H had told me, and she pretty much blew me off (she wouldn't even review the tests that her department asked me to have and bring with me on disc).
Kelly and I walked out of that room frustrated and deeply upset. I felt that she wrote me off without really examining all of the evidence and knew that I would get no where trying to talk with her.
Doc #2, Dr. Chan - gastrointestinal oncologist
Everything that Dr. B was not, Dr. Chan was. I would send you all to hug her now because she, and her fellow, Dr. O, were amazing.
They actually looked at those test results that I brought and felt, based on those that the most recent diagnosis of two cancers (processes) was the most likely scenario. That being said, they would not sign off on that without more testing of the tissue samples, because it is possible Dr. B is right (I did not like typing that!). The testing is going to happen next week, and then my case is going to be brought before one of the DF tumor boards. That is where everyone involved gets together and settles on a diagnosis and the best-course treatment plan. The tumor board will meet on Thursday, so the wait is not too long.
The other big issue the St. Peter's pathologist and the DF pathologist do not agree on is the activity of the liver tumor that was sampled. St. Peter's says it is a 1 (low activity), DF says it is a 3 (high activity). The treatment will be different depending on the activity level, so that needs to be decided, if in fact, the tumor board agrees that the liver is carcinoid.
In between Dr. B and Dr. Chan I called "my" Dr. S who proved, yet again, why he gets the awesome label. He helped unmuddy the waters (that whole physician-to-physician thing...) and prevented me from climbing walls.
So, what does all of this mean?
1) It means I will not start treatment on Tuesday (say it with me: "It is essential to have the correct diagnosis before beginning treatment. It is essential to have the correct diagnosis before beginning treatment.")
2) It means we still need to sort out two major issues:
(a) Is this one process (cancer) - in both the liver and cervix or is it two processes - cervical cancer and carcinoid in the liver?
(b) If carcinoid in the liver, what is the activity level of the tumors?
3) Once those issues are sorted out, then treatment can begin. (Hey, have you heard me say that before?)
This is long...it is jargon-y (though by using the faux term jargon-y, I think I made it less so)...it adds more murk to the mix...it is my way of attacking cancer. Confusion!
Recap of the day below.
Doc #1, aka Dr. B - gyn oncologist
I am not going to name Dr. B by her full name because I am not a fan. Not. At. All.
She came and showed me the two pathology reports that the pathologists at Dana Farber (henceforth, DF) generated. The cervical analysis matched what we knew, the liver did not. She is convinced the pathologist at DF is correct and staged me back to cervical cancer 4B. In other words, the cancer in the liver is metastasized cervical cancer, not carcinoid (see the Reality entry for why this is bad news). I attempted to ask questions about her diagnosis based on what Dr. S and Dr. H had told me, and she pretty much blew me off (she wouldn't even review the tests that her department asked me to have and bring with me on disc).
Kelly and I walked out of that room frustrated and deeply upset. I felt that she wrote me off without really examining all of the evidence and knew that I would get no where trying to talk with her.
Doc #2, Dr. Chan - gastrointestinal oncologist
Everything that Dr. B was not, Dr. Chan was. I would send you all to hug her now because she, and her fellow, Dr. O, were amazing.
They actually looked at those test results that I brought and felt, based on those that the most recent diagnosis of two cancers (processes) was the most likely scenario. That being said, they would not sign off on that without more testing of the tissue samples, because it is possible Dr. B is right (I did not like typing that!). The testing is going to happen next week, and then my case is going to be brought before one of the DF tumor boards. That is where everyone involved gets together and settles on a diagnosis and the best-course treatment plan. The tumor board will meet on Thursday, so the wait is not too long.
The other big issue the St. Peter's pathologist and the DF pathologist do not agree on is the activity of the liver tumor that was sampled. St. Peter's says it is a 1 (low activity), DF says it is a 3 (high activity). The treatment will be different depending on the activity level, so that needs to be decided, if in fact, the tumor board agrees that the liver is carcinoid.
In between Dr. B and Dr. Chan I called "my" Dr. S who proved, yet again, why he gets the awesome label. He helped unmuddy the waters (that whole physician-to-physician thing...) and prevented me from climbing walls.
So, what does all of this mean?
1) It means I will not start treatment on Tuesday (say it with me: "It is essential to have the correct diagnosis before beginning treatment. It is essential to have the correct diagnosis before beginning treatment.")
2) It means we still need to sort out two major issues:
(a) Is this one process (cancer) - in both the liver and cervix or is it two processes - cervical cancer and carcinoid in the liver?
(b) If carcinoid in the liver, what is the activity level of the tumors?
3) Once those issues are sorted out, then treatment can begin. (Hey, have you heard me say that before?)
This is long...it is jargon-y (though by using the faux term jargon-y, I think I made it less so)...it adds more murk to the mix...it is my way of attacking cancer. Confusion!
Thursday, March 15, 2012
Not a Real Post
Spending the night in Beverly, right outside of Boston, with Shawn and Kate. Last night was far too short of a night, and spending 4 hours in a car, followed by some wine makes for a sleepy me. So, no real post from me tonight. I am going to grab some sleep before my day at Dana Farber tomorrow.
Wednesday, March 14, 2012
The second Wednesday of every month, except for July and when it is the third Wednesday instead
About once I month I play Bunco. For those of you who don't know what Bunco is, it is a game people play to prove I cannot make tally marks and carry on a conversation at the same time. Okay, maybe that is not the actual goal of the game, but it is what I have learned from playing. It is also what my Bunco group has learned since they see me with a score sheet and take it away. Hmph.
My Bunco group started when one of my neighbors, Vicki (henceforth known as She Who Will Not Be Named since she is moving away and abandoing us for sunny Cali), rang my doorbell and gave me a flyer for a Bunco group she was starting and she insisted it would be fun (true) and easy (she did not tell me I would have to count while drinking). Early on I missed a lot of nights between work deadlines and um, work deadlines, but gradually was able to go more, and I started genuinely missing these women the months I could not go.
We have now been playing together for 6 years. Our group has evolved ~ some members were not a good fit or moved away, one beloved member lost her battle with cancer, and April will be our last month with our founder, AKA She Who Will Not Be Named. Six years of weaving friendships among a core group of women has created a strong bond ~ one which I am thankful to have in my life.
I should note, they also requested I use more curse words in my blog so they could drink more often. Did I mention we are also a classy bunch?
My Bunco group started when one of my neighbors, Vicki (henceforth known as She Who Will Not Be Named since she is moving away and abandoing us for sunny Cali), rang my doorbell and gave me a flyer for a Bunco group she was starting and she insisted it would be fun (true) and easy (she did not tell me I would have to count while drinking). Early on I missed a lot of nights between work deadlines and um, work deadlines, but gradually was able to go more, and I started genuinely missing these women the months I could not go.
We have now been playing together for 6 years. Our group has evolved ~ some members were not a good fit or moved away, one beloved member lost her battle with cancer, and April will be our last month with our founder, AKA She Who Will Not Be Named. Six years of weaving friendships among a core group of women has created a strong bond ~ one which I am thankful to have in my life.
I should note, they also requested I use more curse words in my blog so they could drink more often. Did I mention we are also a classy bunch?
Tuesday, March 13, 2012
6 great miles and 7.1 miles of pain
[An entry from September 2010 that I found today...it made me think of other big goals, a needed reread for me today.]
The Adirondack Half Marathon arrived and thankfully, departed.
The Adirondack Half Marathon arrived and thankfully, departed.
Prelude 1: We meet up with a fellow first-timer and old friend, Jenn, and her friend Sam. I love Jenn to pieces. She is one of those friends that I wish lived closer. She is amazing at many things. Including talking about the bathroom. Not as in designing or cleaning, but going to. Anyhow, her bathroom talk completely distracted me from the fact I was about to run 13.1 miles. For "fun."
Prelude 2: We get up to the start line where I run into another person I know, Sereena, who is an amazing runner. As in uber-fast. As in I ask, "Did your kids come up with you?" Her response: "No, it didn't make sense for less than 2 hours." Right. Less than 2 hours. I will never, ever see her on the course.
The Race: Everyone huddles up for the start, the gun goes off and off we go. With my blessing, Kelly leaves me in the dust, which means for the next 3 hours it is me and my iPod (no lectures about running with an iPod!). Let me tell you, the first 6 miles of the course felt so good. I felt like I could run all day. My stride was decent, my pace was steady, there were fun people along the course. And then I hit 6.1. Actually, it had to be a little later than that because I crossed the halfway pad before all hell broke loose. So 6+ awesome miles. Then I got calf cramps. Since I am just a casual runner who never had calf cramps before, I had no idea what to do. So I stopped running and hobbled/walked the rest of the course.
My time totally sucked. But I finished. I, who could not run a 5K four months ago finished a half marathon. I am pretty damn proud of doing that.
My time totally sucked. But I finished. I, who could not run a 5K four months ago finished a half marathon. I am pretty damn proud of doing that.
The Milkshake Test
Another radioactive test today (and tomorrow, and Thursday). I find it hugely ironic cancer patients get radioactive tests. I mean, I understand it is low-dose and all, but still. You should see the safety precautions the woman used who injected me with the radioactive isotope today. I am amazed I am not glowing based on those precautions alone.
I call it the milkshake test because my milkshake brings all the boys to the yard...
Oh wait, no...that is a bad Kelis song.
During this three day test, the list of foods is: juice, water, broth, soda, Jello, and milkshakes.
Random, no?
The foods I can eat includes all "smooth foods that have no chunks," so I guess the list is more appetizing than reading that description.
Anyhow...working on a point here.
The milkshake test, and other tests like it are bad for me. Not because of the radioactive nature of them, but because of the isolation. I have to be alone for several hours during them. Today I had 4 hours between injection and the first scan, during which it was recommended I not be near the kids. Then I was in the scanning room for 2 hours for 3 different scans. That is a whole lot of time with me and my wandering mind.
The "automatic" nature of the daily routine is a beautiful thing. It helps pull one from the depths of grief into the throws of everyday life, even if just for brief moments. When that daily routine involves three fun-loving children, those brief moments become longer and longer. Today I had 6 hours without a routine. Without a child who needed me for something. Without a playroom to tidy up or a kitchen to cook in. Six hours to think about everything I don't really want to think about, even though I need to think about all of it. Six hours to think about what I want my kids to know about me, from me (in some medium). Six hours to figure out how to deal with the (im)possible tasks before me.
I call it the milkshake test because my milkshake brings all the boys to the yard...
Oh wait, no...that is a bad Kelis song.
During this three day test, the list of foods is: juice, water, broth, soda, Jello, and milkshakes.
Random, no?
The foods I can eat includes all "smooth foods that have no chunks," so I guess the list is more appetizing than reading that description.
Anyhow...working on a point here.
The milkshake test, and other tests like it are bad for me. Not because of the radioactive nature of them, but because of the isolation. I have to be alone for several hours during them. Today I had 4 hours between injection and the first scan, during which it was recommended I not be near the kids. Then I was in the scanning room for 2 hours for 3 different scans. That is a whole lot of time with me and my wandering mind.
The "automatic" nature of the daily routine is a beautiful thing. It helps pull one from the depths of grief into the throws of everyday life, even if just for brief moments. When that daily routine involves three fun-loving children, those brief moments become longer and longer. Today I had 6 hours without a routine. Without a child who needed me for something. Without a playroom to tidy up or a kitchen to cook in. Six hours to think about everything I don't really want to think about, even though I need to think about all of it. Six hours to think about what I want my kids to know about me, from me (in some medium). Six hours to figure out how to deal with the (im)possible tasks before me.
Monday, March 12, 2012
Sand Pictures
In the weeks after we lost Cora, we desperately were searching for some way to honor her memory, but we were too caught up in our grief to find something appropriate and tangible. Then one day, via email, my friend Meg sent me a picture of Cora's name written in the sand with an expanse of ocean in the background. She had given us a great gift, a way to honor Cora that deeply spoke to us and comforted us.
We then asked some friends to help us celebrate Cora's life by following suit and writing her name in the sand, taking a picture, and sending it to us. For us, these pictures act as small tokens of remembrance, fleeting memorials, that Cora lived and is remembered.
The link below will bring you to many, but not all, of the sand pictures that have been sent to us from all over the world. We expected a few close friends to participate. We have been overwhelmed by how many people have sent us pictures of Cora's name written in the sand. So many of them have wonderful backstories. Someday soon I hope to put each photo in a book along with the location, date, photographer, and backstory.
117 pictures
Click here to view these pictures larger
The filename of each picture tells the location and date of each photo.
We then asked some friends to help us celebrate Cora's life by following suit and writing her name in the sand, taking a picture, and sending it to us. For us, these pictures act as small tokens of remembrance, fleeting memorials, that Cora lived and is remembered.
The link below will bring you to many, but not all, of the sand pictures that have been sent to us from all over the world. We expected a few close friends to participate. We have been overwhelmed by how many people have sent us pictures of Cora's name written in the sand. So many of them have wonderful backstories. Someday soon I hope to put each photo in a book along with the location, date, photographer, and backstory.
117 pictures
Click here to view these pictures larger
The filename of each picture tells the location and date of each photo.
Sunday, March 11, 2012
It Pales in Comparison
I am going to share a quotation from Elizabeth Edwards, since she says it far better than I ever could:
"If you know someone who has lost a child or lost anybody who's important to them, and you're afraid to mention them because you think you might make them sad by reminding them that they died, they didn't forget they died. You're not reminding them. What you're reminding them of is that you remember that they lived, and that's a great, great gift."
So, yes, you can say Cora's name. I can't guarantee my reaction. Some days I am okay, and other days I cry, but since you are my friend, you will understand that. You don't need to feel guilty if I cry (or if I don't) - your words have not caused my tears, and in many cases I am thankful when someone mentions her. Especially now, when suddenly I feel like the "cancer show," - I don't want her to be forgotten.
As far as cancer questions, you can ask me anything. Off the top of my head I can't think of a question I wouldn't want to answer, but if you ask something I don't want to share/answer, I will tell you that.
And issues in your own lives. Let's be honest, chances are in the "big picture" they do pale in comparison to what is going on for me. But, those issues are important to you and matter to you, and so they are important to me and matter to me too. I do not only want to talk about me when I see you. As a matter of fact, I really don't want to talk only about me. Though I am awesome. I want to hear about everything I used to want to hear about, plus all the new stuff that is going on with you - good and bad. (Though if you whine about lame things, I am going to call you on that, but I always have done that.) Likewise, I want you to do the same for me. I know you want to know how I am doing, but I also want you to know that all my "old" life ~ it is still there ~ and I am still living it. Because the minute I stop, that is the minute the cancer has won, and that is not going to happen if I can help it.
My friend Chris has a quotation by Leonard Cohen that I always found meaningful, that I think will serve as a good wrap up for the evening: "It's the notion that there is no perfection ~ that this is a broken world and we live with broken hearts and broken lives but still that is no alibi for anything. On the contrary, you have to stand up and say hallelujah under those circumstances."
Saturday, March 10, 2012
The Learning Curve
A few days back, a neighbor who went through chemo for breast cancer brought me some of her favorite hats and head scarves from her hair-free days. Tonight I tried to put one on. I realized that I have no idea how to tie it ~ my version looked very "pirate maiden-esque." (I don't suggest Googling that, nothing good could come of that search.) But, I am not worried. Turns out the Wood Cancer Center has a class for that.
This week was off from appointments, but not off from the cancer center. Tuesday night I had my chemotherapy education course (required...I don't know what they do if you are a no show...). Turns out it was pretty helpful in terms of learning to navigate the cancer center. It was there I learned about the "tie a scarf on your head/learn to draw eyebrows" class. It has a much nicer name, but I can't remember it.
I also learned they offer a couples massage training course: 8 hours of training. Sounds tempting, yes? It would be, except for the fact when I was pregnant with Rory, Kelly and I took a pregnancy massage class. The sum total of massages I have received from Kelly since that class: 0. (And no, dear, you rubbing my foot as you hop into bed does not count.) This paragraph is what one would call a tangent. (Math! It is everywhere.)
I also learned on Tuesday I need to get a port because, if you recall, I have crap veins. I was not overly excited about this development, but then on Thursday I went to my first "cancer support" meeting. At a bar. I chatted with one woman for 15 minutes before she mentioned she had a port in her arm. I didn't even notice it, though that might have been the bar lighting. Mine will likely be in my chest wall, but still, seeing one "in place" made it much more appealing. As did hearing from just about everyone that the port made things so much easier.
Other cancer support group knowledge: my eyelashes will fall out. I figured out the eyebrows on my own. But my eyelashes?!? Isn't that weird?
The point of this rambling entry is that there is a huge learning curve to having cancer. I mean, the meds and treatments are the biggest parts of that curve, but there are also all these other little things. Like how to prep for chemo, not just how to deal with the after effects; and what a "Nadir day" is; and that at some point I won't have eyelashes, and how to tie a scarf so I don't look like I am auditioning for the Pirates of the Caribbean, Part 14.
This week was off from appointments, but not off from the cancer center. Tuesday night I had my chemotherapy education course (required...I don't know what they do if you are a no show...). Turns out it was pretty helpful in terms of learning to navigate the cancer center. It was there I learned about the "tie a scarf on your head/learn to draw eyebrows" class. It has a much nicer name, but I can't remember it.
I also learned they offer a couples massage training course: 8 hours of training. Sounds tempting, yes? It would be, except for the fact when I was pregnant with Rory, Kelly and I took a pregnancy massage class. The sum total of massages I have received from Kelly since that class: 0. (And no, dear, you rubbing my foot as you hop into bed does not count.) This paragraph is what one would call a tangent. (Math! It is everywhere.)
I also learned on Tuesday I need to get a port because, if you recall, I have crap veins. I was not overly excited about this development, but then on Thursday I went to my first "cancer support" meeting. At a bar. I chatted with one woman for 15 minutes before she mentioned she had a port in her arm. I didn't even notice it, though that might have been the bar lighting. Mine will likely be in my chest wall, but still, seeing one "in place" made it much more appealing. As did hearing from just about everyone that the port made things so much easier.
Other cancer support group knowledge: my eyelashes will fall out. I figured out the eyebrows on my own. But my eyelashes?!? Isn't that weird?
The point of this rambling entry is that there is a huge learning curve to having cancer. I mean, the meds and treatments are the biggest parts of that curve, but there are also all these other little things. Like how to prep for chemo, not just how to deal with the after effects; and what a "Nadir day" is; and that at some point I won't have eyelashes, and how to tie a scarf so I don't look like I am auditioning for the Pirates of the Caribbean, Part 14.
Friday, March 9, 2012
Ky Ky
Aren't we classy? That is my middle child, Kyan (aka Ky Ky) and I this evening when he decided that sleep was for the weak. I think he has known since the moment he was born that he was going to be a middle child and has strove to avoid middle child syndrome. I know he is only 2, but the kid knows how to work his audience.
Today was a rare day where I was home most of the day with Ky and Crosby while Rory was away at school and then with a friend. While Ky still did not have my full attention, it is great to be able to spend more one-on-one time with him than I can on a normal day. Even though Ky asked about three billion times "Where's Rory?" I can also see how happy he is to have mommy mostly to himself. I can just sense the wheels turning: "How many hours can I get her to push around Matchbox cars with me?"
Kyan's other love (Matchbox cars being first) is reading. And somehow, through all this reading, he got kind of clever. He knows all his letters and his single digit numbers. Well, except for the letter O and the number zero. Those get flipped. But zero is a weird number, so I am going to let that slide until he is 3. Then, game on.
But then, just when I am thinking "this kid, he is bright," he proceeds to eat a piece of chalk while doing a funny little shuffle walk and lifting his shirt up over his face so his belly shows and he can't see where he is going.
Ky, in his amazing 2 year old way, has taught me to go "all in," and to try anything and everything I can. I am pretty much behind that, except when it comes to the chalk (and paint, and rocks, and Lego wheels, and...I could go on and on).
Thursday, March 8, 2012
No Walls
One of my favorite sets in swimming used to be a "no walls" set. For the non-swimming folks, what that means is that you swim to right before the wall, do a flip turn, but instead of having the wall to push off from you essentially have to work against the current you just created and rebuild your speed. (Think of a salmon swimming upstream...only we don't do it to reproduce...at least in MY lane we don't do it for that!) I loved these sets because they really increased my endurance - a few times isn't too bad, but over and over again can be exhausting - working through the set was satisfying.
Today I was swimming solo and there was a long no walls set as part of the workout, and it was just tiring. I missed the little post-flip turn boost I get when pushing off the wall and it was frustrating feeling like I was struggling to even move, not to mention not even coming close to a passable stroke.
There is a very obvious analogy here to everything that is going on in my life lately. I have always liked a challenge, I have always liked to push myself harder, but right now I am tired. I would like a few moments to rest at the wall, to mourn Cora, and then push off again to battle these cancers, but there are no walls for me right now.
Today I was swimming solo and there was a long no walls set as part of the workout, and it was just tiring. I missed the little post-flip turn boost I get when pushing off the wall and it was frustrating feeling like I was struggling to even move, not to mention not even coming close to a passable stroke.
There is a very obvious analogy here to everything that is going on in my life lately. I have always liked a challenge, I have always liked to push myself harder, but right now I am tired. I would like a few moments to rest at the wall, to mourn Cora, and then push off again to battle these cancers, but there are no walls for me right now.
Wednesday, March 7, 2012
Evan
Several years ago, a friend and coworker lost her newborn grandson, Evan. Evan's mom fed him and was letting him sleep on her shoulder when she suddenly realized that Evan was not breathing. Evan's parents called 911 and for three days prayed for a miracle, but Evan passed away, surrounded by his loving family.
Over the years, especially after I had my own children, I would occasionally think about my friend and her family and wonder how Evan's parents were holding up.
The night Cora's heart stopped beating, as I was sitting in my family room, for some reason I thought of Evan and his family. Thinking of him is what made me look down at Cora - to check on her - because she was still at that tiny size that you can't feel them breathing. I saw her movements were not her own, but mine.
I have thought about this over and over. Why did I think of Evan right then?
Over the years, especially after I had my own children, I would occasionally think about my friend and her family and wonder how Evan's parents were holding up.
The night Cora's heart stopped beating, as I was sitting in my family room, for some reason I thought of Evan and his family. Thinking of him is what made me look down at Cora - to check on her - because she was still at that tiny size that you can't feel them breathing. I saw her movements were not her own, but mine.
I have thought about this over and over. Why did I think of Evan right then?
Tuesday, March 6, 2012
Team SMAC t-shirts
Cost: $10/child size and $15/adult size
Out of town folks will need to pay shipping: $2 for 1-2 shirts; $5 for 3 or more
Sizes: Child S-XL; Adult S-XXL (They are looking into XS for children. If you are interested, email the address below and Kelli will let you know if they are available.)
To order: Send an e-mail with your name, contact info (phone number for local folks, full address for out of town folks), # of shirts you would like, and sizes to: TeamSMAC1@gmail.com.
Deadline: Thursday, March 15
How to pay: Local folks can pay in advance if you see a "Team SMAC" member (Kelli, Kelly, Betsy, Suzanne, or someone you know will see us) or you can pay when you receive your shirts. Please note, the shirts are made to order, so if you order one, it is yours.
Out of town folks: You can send in your payment. In your email, note that this is what you want to do and we'll send you the address, etc.
The shirts should arrive the third week in March.
What if I change my mind/forgot something/need to email again? Just let Kelli know in your email that this is your second (third, fourth, twentieth) email to help her connect the dots.
Monday, March 5, 2012
Organs
When I was hugely pregnant with Rory, Kelly had his tonsils out. When I was hugely pregnant with Kyan, Kelly had is gallbladder out. When I became pregnant with the twins, we joked about which organ Kelly would be "donating." Well, he made it through my pregnancy, but his body knew...so today, a little over 5 months after the twins were born, Kelly "donated" his appendix after ending up in the ER last night. (He is a little groggy, but feeling better overall.)
Today a very new friend, Jamie, who is the wife of an old high school friend, was part of a true organ donation. She gave one of her kidneys to her mom. I could use words like courageous, brave, rooted, devoted to describe her, but I think her action alone tells you a great deal about her. Please keep Jamie, her mom, and her family in your thoughts and prayers.
Perhaps it was waiting in the hospital combined with the types of surgeries, but today I thought a great deal about one part of Cora's PICU time. When we learned that Cora would not survive, one of her nurses asked us (though I cannot even remember how she approached the topic) if we wanted to talk to someone about organ donation. We readily agreed, hoping such an act would provide a tiny glimmer of light. But then, as the organ donation team spoke with us the realization hit - Cora would die in a cold OR, without us, surrounded by strangers. I couldn't stand the thought of it. I still can't.
It was a selfish act, I wanted to be with her at the end. I wanted her in our arms. I keep thinking, someday I will feel guilty about that choice, but I don't.
Today a very new friend, Jamie, who is the wife of an old high school friend, was part of a true organ donation. She gave one of her kidneys to her mom. I could use words like courageous, brave, rooted, devoted to describe her, but I think her action alone tells you a great deal about her. Please keep Jamie, her mom, and her family in your thoughts and prayers.
Perhaps it was waiting in the hospital combined with the types of surgeries, but today I thought a great deal about one part of Cora's PICU time. When we learned that Cora would not survive, one of her nurses asked us (though I cannot even remember how she approached the topic) if we wanted to talk to someone about organ donation. We readily agreed, hoping such an act would provide a tiny glimmer of light. But then, as the organ donation team spoke with us the realization hit - Cora would die in a cold OR, without us, surrounded by strangers. I couldn't stand the thought of it. I still can't.
It was a selfish act, I wanted to be with her at the end. I wanted her in our arms. I keep thinking, someday I will feel guilty about that choice, but I don't.
Sunday, March 4, 2012
FAQ, part 2
One question I forgot....
Why do you write the blog?/Your blog is very honest, how do you write like that?
The answer is simple and complicated at the same time. No matter how my prognosis changes (hopefully for the better), I will die while Rory, Kyan, and Crosby are still children. So, part of this is a trail for them when they are adults to know a little more about me, and what happened through my cancer journey and how they were a part of it. My sincere hope is that much of it will be enlightening ~ that their childhoods are just that, childhoods, and they are protected as much as possible.
Why do you write the blog?/Your blog is very honest, how do you write like that?
The answer is simple and complicated at the same time. No matter how my prognosis changes (hopefully for the better), I will die while Rory, Kyan, and Crosby are still children. So, part of this is a trail for them when they are adults to know a little more about me, and what happened through my cancer journey and how they were a part of it. My sincere hope is that much of it will be enlightening ~ that their childhoods are just that, childhoods, and they are protected as much as possible.
FAQ
You guys have the best questions. Other than the “How are
you/Kelly/the boys/your family?” and “What can I do to help?” there have been
some that I have heard a few times. So…a Sunday FAQ.
1) What
do the kids know?
Rory and Ky have been told that I have cancer. They don’t really need to know more than that right now. When I start treatments we will address the physical things that they will latch onto – the port, losing my hair, etc. They will not know this is terminal until that point is much closer. One step at a time.
3) How
did they find the cancer(s)?
It was a long journey to even get to the start of the process, but in January I went to a GI doc who requested a liver ultrasound. The ultrasound showed some spots on my liver that led to a CT scan. The CT scan did not clarify the liver irregularities, but it did identify a mass in my pelvis. This is where the paths branched for a bit.
To pursue the pelvic mass, I had an ultrasound. The mass was thought to be placenta from the twins (festering placenta!). However, I was scheduled for a liver MRI (since the CT was inconclusive) so my GYN decided to tag a pelvic MRI on as well, just to double-check.
The MRI lead to the conclusion (understandably, given the facts) that the liver irregularities were non-cancerous lesions that I didn’t need to worry about. But, it did raise a higher red flag about the pelvis/cervix. I then had surgery to have tissue samples taken of the cervix which showed I have cervical cancer.
My GYN oncologist saw the liver results and, based on the cervical cancer diagnosis, ordered a PET scan (a radioactive scan in which cancer “lights up”) to check my liver and a liver biopsy.
The PET scan showed 8 tumors in my liver, as well as some mild bone activity. The conclusion at this point (again, a sound conclusion given the known information) was that the cervical cancer metastasized (spread) to my liver. This was an atypical way for the cancer to spread, but within reason.
The following week I had my liver biopsy. The biopsy results showed that the cancer in my liver was a different cancer than the cancer in my cervix, but that it was still a metastasized cancer (in other words, Stage 4).
And…here we are now. Next week I will have a scan to find the primary source of the cancer that has spread to my liver. It typically is in the GI tract. (It wouldn’t show up on the PET scan because of a contrast agent used during the PET scan.)
Aren’t you glad you asked?
4) Why
is it called GulfGulf’s blog?
Ah…when Kelly and I first started dating (again) I lived in NYC and he lived inRutland
5) And,
my personal favorite that way too many of you have asked: Can I use curse words
in my story about you?
Yes. As long has they help the story!
Rory and Ky have been told that I have cancer. They don’t really need to know more than that right now. When I start treatments we will address the physical things that they will latch onto – the port, losing my hair, etc. They will not know this is terminal until that point is much closer. One step at a time.
As an aside, it should be noted that
we choose our vocabulary very carefully with the boys. After Cora died a
well-meaning person told Rory that Cora got sick and died ~ after that, he
thought he would die each time he was sick (and to him, dying was going away
and never coming home). So – I have cancer
(not I am sick). When I start chemotherapy and radiation, those words will be
used. I don’t want them to worry that if they take the “pink stuff” for an ear
infection they will lose their hair!
2) What is going on with your treatment?
I will go to Dana Farber on
3/16 to see two different specialists (one for each type
of cancer). The intent/hope
is that everyone will be in agreement as to how to treat both cancers and
treatment can begin the week of 3/19. Question within a question: Aren’t you
impatient? Yes, I am. This is an atypical situation ~ it will take a little bit to sort out. But, I have great confidence in Dr. S and Dr. H (radiation oncologist) and know that when we start, it will be the best possible treatment path.
It was a long journey to even get to the start of the process, but in January I went to a GI doc who requested a liver ultrasound. The ultrasound showed some spots on my liver that led to a CT scan. The CT scan did not clarify the liver irregularities, but it did identify a mass in my pelvis. This is where the paths branched for a bit.
To pursue the pelvic mass, I had an ultrasound. The mass was thought to be placenta from the twins (festering placenta!). However, I was scheduled for a liver MRI (since the CT was inconclusive) so my GYN decided to tag a pelvic MRI on as well, just to double-check.
The MRI lead to the conclusion (understandably, given the facts) that the liver irregularities were non-cancerous lesions that I didn’t need to worry about. But, it did raise a higher red flag about the pelvis/cervix. I then had surgery to have tissue samples taken of the cervix which showed I have cervical cancer.
My GYN oncologist saw the liver results and, based on the cervical cancer diagnosis, ordered a PET scan (a radioactive scan in which cancer “lights up”) to check my liver and a liver biopsy.
The PET scan showed 8 tumors in my liver, as well as some mild bone activity. The conclusion at this point (again, a sound conclusion given the known information) was that the cervical cancer metastasized (spread) to my liver. This was an atypical way for the cancer to spread, but within reason.
The following week I had my liver biopsy. The biopsy results showed that the cancer in my liver was a different cancer than the cancer in my cervix, but that it was still a metastasized cancer (in other words, Stage 4).
And…here we are now. Next week I will have a scan to find the primary source of the cancer that has spread to my liver. It typically is in the GI tract. (It wouldn’t show up on the PET scan because of a contrast agent used during the PET scan.)
Aren’t you glad you asked?
Ah…when Kelly and I first started dating (again) I lived in NYC and he lived in
Yes. As long has they help the story!
Saturday, March 3, 2012
Strength, Guts, and Fortitude
I was going to write about being angry. Really, really angry. Because I am. And then all these nice things happened because I happen to be surrounded to beyond wonderful people, so now I can't write about being angry. Not tonight.
I am writing in the dining room and Ky is singing Frosty the Snowman. In the sweetest little voice. See, another reason why I can't write about be angry now.
But then I keep trying to write about all of these nice things, and I can't. My words don't do them justice. How can I describe how much a series of messages from a friend who survived a brain tumor means? Or a series of messages from old youth group friends about pot brownies made me laugh because the endeavor would be such a farce? Or how a filled canvas tote from the nurses who took care of me when I had my babies brought me to tears? Or how flowers sent from old friends brightened our kitchen for days? Or how my doctor friends have offered and given guidance and support through this tangled maze? Or how a neighbor I barely know came to my door with scarves and hats for me that she used during her cancer treatment? Or how my oldest, dearest friend is doing and thinking of things I can't even get my head around? Or the countless other things that have happened each day?
I can't. I can't even come close.
An old high school friend messaged me last night, with an offer of generosity I can't even get my head around. He wrapped his message with the words strength, guts, and fortitude. These nice things, they build my strength, guts, and fortitude. And I would add faith.
I am writing in the dining room and Ky is singing Frosty the Snowman. In the sweetest little voice. See, another reason why I can't write about be angry now.
But then I keep trying to write about all of these nice things, and I can't. My words don't do them justice. How can I describe how much a series of messages from a friend who survived a brain tumor means? Or a series of messages from old youth group friends about pot brownies made me laugh because the endeavor would be such a farce? Or how a filled canvas tote from the nurses who took care of me when I had my babies brought me to tears? Or how flowers sent from old friends brightened our kitchen for days? Or how my doctor friends have offered and given guidance and support through this tangled maze? Or how a neighbor I barely know came to my door with scarves and hats for me that she used during her cancer treatment? Or how my oldest, dearest friend is doing and thinking of things I can't even get my head around? Or the countless other things that have happened each day?
I can't. I can't even come close.
An old high school friend messaged me last night, with an offer of generosity I can't even get my head around. He wrapped his message with the words strength, guts, and fortitude. These nice things, they build my strength, guts, and fortitude. And I would add faith.
As It Is
I sometimes find myself wondering with the "what would it be like" thoughts. What would it be like if Cora was still with is? Would she and Crosby be reaching their milestones together? Would Rory and Kyan give her sweet kisses and try to hold her hand in the same way they do Crosby's?
Now, as I try to imagine my family's future, both in the short term and long term, I can't help but think about Cora. I think of the present we almost had with her and the future I dreamed of with her. But, I need to learn to live in my present and in the future with the family I am in. The family with three energetic, vivacious, and loud (very loud!) little boys, one cancer-laden mom, and one dad with more on his shoulders than most could imagine.
Some days I struggle to embrace this life, my life, as it is. While I can think about what life would have been like with Cora with us, I cannot lose sight of my life without her. While I can think about what life will be like when I am gone, I cannot lose sight of the life I have left to live.
Now, as I try to imagine my family's future, both in the short term and long term, I can't help but think about Cora. I think of the present we almost had with her and the future I dreamed of with her. But, I need to learn to live in my present and in the future with the family I am in. The family with three energetic, vivacious, and loud (very loud!) little boys, one cancer-laden mom, and one dad with more on his shoulders than most could imagine.
Some days I struggle to embrace this life, my life, as it is. While I can think about what life would have been like with Cora with us, I cannot lose sight of my life without her. While I can think about what life will be like when I am gone, I cannot lose sight of the life I have left to live.
Thursday, March 1, 2012
Socks
Some days I write about the soul, other days I write about socks.
I am in dire need of new socks. For some reason, all of my socks seem to be biting the dust this winter. I am down to those socks which have survived this long simply because I never really liked them, so I didn't really wear them. Right now I am wearing socks with Yorkies on them. No, really, I am.
I kept meaning to buy new socks, but I am busy and sock buying just was not a priority. Then I was told I had an exceptionally short time to live and thought: "Why buy socks? I won't really need them." Isn't that a weird thought to have? I mean, it certainly wasn't my first thought, but at some point after I found out, I had that thought.
Another thought: I decided I want to be buried (if not cremated, but that thought process is another post...) barefoot. I am not a big fan of shoes, so I want to be barefoot. This will probably make my mom shake her head. My lack of love for shoes has been a mystery to many, especially my mom.
Anyhow, back to the socks. I wasn't going to buy any. But that isn't really a positive action is it? So tonight I am going to wrap this up and go order (yes, order...if I am getting socks, I am getting the ones I like) a drawer full.
I am in dire need of new socks. For some reason, all of my socks seem to be biting the dust this winter. I am down to those socks which have survived this long simply because I never really liked them, so I didn't really wear them. Right now I am wearing socks with Yorkies on them. No, really, I am.
I kept meaning to buy new socks, but I am busy and sock buying just was not a priority. Then I was told I had an exceptionally short time to live and thought: "Why buy socks? I won't really need them." Isn't that a weird thought to have? I mean, it certainly wasn't my first thought, but at some point after I found out, I had that thought.
Another thought: I decided I want to be buried (if not cremated, but that thought process is another post...) barefoot. I am not a big fan of shoes, so I want to be barefoot. This will probably make my mom shake her head. My lack of love for shoes has been a mystery to many, especially my mom.
Anyhow, back to the socks. I wasn't going to buy any. But that isn't really a positive action is it? So tonight I am going to wrap this up and go order (yes, order...if I am getting socks, I am getting the ones I like) a drawer full.
Subscribe to:
Posts (Atom)