When Rory was about a year and a half old, I registered the two of us for a Mommy & Me class at the preschool I wanted to send him to. I really am not sure why I signed us up ~ I think I wanted to get out a little more, and have some one-on-one time with Rory. We met every Friday morning for about 2.5 hours ~ lots of playtime, circle time, craft time, and ending with The Big Green Monster story each week.
The next year I emailed the teacher, Jill, to ask if Kyan and I could join the class mid-year and she said "If you are up for it, join us now." So I did. Ky was the youngest by quite a few months, but he got the hang of things. Except for the craft projects...he tasted every single paint color used during the year. Every. Single. One. He never seemed to enjoy it, but he kept trying!
Through these classes I became friends with the other "moms" and Jill. After our kids were done with the class, we kept up via emails, Facebook, the occasional summer get together, and preschool pick ups and drop offs. When we announced we were having twins, they celebrated with me (and questioned my sanity with having 4 under 4...). When we lost Cora, some of the first people at our door were my Mommy & Me friends, and those friends are still at our side today.
A while back I was talking with a friend about how sometimes support comes from sources that seem unexpected or somewhat surprising, but when one really thinks about it, those sources make perfect sense. Without a doubt, this is how I feel about my Mommy & Me friends ~ our friendships grew so naturally the strength of them surprised me.
Much love to all of my Mommy & Me friends ~ I am so glad for our Friday mornings together.
(I am also glad for Jill choosing washable, non-toxic paints...)
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Thursday, June 14, 2012
Sunday, May 27, 2012
Liver
I get two big offers from people (a) a homemade meal and/or (b) part of their liver. Sample conversation:
Friend: I was thinking of something I could do to help. How about a pot of sauce and part of my liver? I'd be happy to get tested while the sauce simmers.
Me: Um, well...
Friend: Don't you like sauce?
Okay, so I totally made that conversation up, but the gist is there. People haven't thought twice about being willing to be part of a major surgery to help me out. Unfortunately, a transplant is not an option that is on the table.
But...Steve Jobs had the same type of cancer I do and had a liver transplant! It does seem logical-replace the organ filled with tumors and viola...cured patient. The issue is the systemic nature of advanced cancer-it is in my body so while replacing my liver might help for a short amount of time, in the long run the replacement would likely become riddled with tumors. Compound that with the transplant meds and treatment of the cancer in the "new" liver would be a challenge, to say the least.
It is my understanding that treatments such as the chemotherapy and embolisms are part of the first line of treatments in patients like me because they offer the greatest chance at extending one's life while also maintaining quality of life.
So, while I deeply appreciate the offer of all of the gently (or not so gently) used livers, I am going to have to pass for now.
Friend: I was thinking of something I could do to help. How about a pot of sauce and part of my liver? I'd be happy to get tested while the sauce simmers.
Me: Um, well...
Friend: Don't you like sauce?
Okay, so I totally made that conversation up, but the gist is there. People haven't thought twice about being willing to be part of a major surgery to help me out. Unfortunately, a transplant is not an option that is on the table.
But...Steve Jobs had the same type of cancer I do and had a liver transplant! It does seem logical-replace the organ filled with tumors and viola...cured patient. The issue is the systemic nature of advanced cancer-it is in my body so while replacing my liver might help for a short amount of time, in the long run the replacement would likely become riddled with tumors. Compound that with the transplant meds and treatment of the cancer in the "new" liver would be a challenge, to say the least.
It is my understanding that treatments such as the chemotherapy and embolisms are part of the first line of treatments in patients like me because they offer the greatest chance at extending one's life while also maintaining quality of life.
So, while I deeply appreciate the offer of all of the gently (or not so gently) used livers, I am going to have to pass for now.
Saturday, May 26, 2012
Pots and Pans
I don't cook. I mean, I do. Begrudgingly. I suppose the more appropriate thing to say would be that I don't like to cook. I cook because I have 3 small children and I understand I should not feed them pizza every night. Even if it is loaded with veggies. Because that does not make it acceptable seven nights a week. Who comes up with these rules?
I have two huge drawers of pots and pans. I have the pots and pans my mom suggested I buy when I first went to live on my own. Then I have the wedding pots and pans. I also have the oh crud, the wedding pots and pans are a pain in the ass to clean so let's get different ones for day to day use, but keep the wedding pots and pans in case we ever need them.
I use three of these pots and pans on a regular basis.
I attempt to act like I can cook. I rip recipes out of magazines. I have two drawers full of spices. I do make a pretty amazing butternut squash curry soup. But I don't like cooking. My mother and Kelli-girl find being in the kitchen relaxing. Something is clearly wrong with both of them. I should really make a note to have them examined by a professional.
I am terrific at take-out. When I am invited to a bridal shower and given a recipe card to write down my favorite recipe, I write down the names of several tasty take-out places and their numbers. When I lived in New York City I learned that one could have a slice of pizza delivered. A slice! I keep thinking this could be the way to make my millions in Queensbury, one slice at a time. Maybe not.
So many people have offered to cook dinner for us, to do something, to help us in some way. We keep saying no, even though we appreciate the kindness and generosity of these people. And the reason is simple: we want to keep-on-keeping-on for as long as we can. I want to go through my green binder of ripped our recipes to attempt something new or an old stand-by because it is part of our normal.
I have two huge drawers of pots and pans. I have the pots and pans my mom suggested I buy when I first went to live on my own. Then I have the wedding pots and pans. I also have the oh crud, the wedding pots and pans are a pain in the ass to clean so let's get different ones for day to day use, but keep the wedding pots and pans in case we ever need them.
I use three of these pots and pans on a regular basis.
I attempt to act like I can cook. I rip recipes out of magazines. I have two drawers full of spices. I do make a pretty amazing butternut squash curry soup. But I don't like cooking. My mother and Kelli-girl find being in the kitchen relaxing. Something is clearly wrong with both of them. I should really make a note to have them examined by a professional.
I am terrific at take-out. When I am invited to a bridal shower and given a recipe card to write down my favorite recipe, I write down the names of several tasty take-out places and their numbers. When I lived in New York City I learned that one could have a slice of pizza delivered. A slice! I keep thinking this could be the way to make my millions in Queensbury, one slice at a time. Maybe not.
So many people have offered to cook dinner for us, to do something, to help us in some way. We keep saying no, even though we appreciate the kindness and generosity of these people. And the reason is simple: we want to keep-on-keeping-on for as long as we can. I want to go through my green binder of ripped our recipes to attempt something new or an old stand-by because it is part of our normal.
Friday, May 18, 2012
Dollywood!
Yesterday was Kelli-girl's 38th birthday. She thought she escaped a post, but in reality, I got home late and now I have the element of her thinking she got off scott free. Heee!
We met when we were in sixth grade. Kelli moved upstate from Long Island and on the first day of school she had green hair. We all thought she was a punk. In fact, pool chlorine turned her hair green because not only does she have really thick hair, but she also has really blond hair. In sixth grade, this did not matter. We thought she was a wild NYC rebel.
Flash forward to our senior year of high school. Because seating was often alphabetical, we often sat near or next to one another ~ in particular in our honors English class (Christie B., do you need an adjective of the day?) and then in our economics class (the year of Mr. Driscoll's retirement...). We ended up working at Spencer's (what were our parents thinking?!?!) and the Shoreline Restaurant together as well.
I could ramble on and on about our antics that cemented our friendship. Like the weekend I was in NYC for job interviews and somehow ended up inappropriately and unintentionally groping Kelli...twice. Or why we end up at Friendly's even without children in tow. Or how she broke my kitchen table (ahem...), but I think anyone who knows even a little bit about me knows that Kelli is my person. So much so that when I married Kelly she referred to him as "our first husband" during her toast. (Do not pity him, he knew exactly what he was in for!)
In two years we are planning to go to Dollywood to celebrate our 40th birthdays (please note, she is older and wiser...I am just the tag-along young 'un). We have had this plan since we were in our early 20s and to be honest, I have no idea why we thought Dollywood would be the place to ring in our 40th birthdays, but we have been talking about it for 15+ years, so I think we are committed. It is one of my little prayers to join her there.
We met when we were in sixth grade. Kelli moved upstate from Long Island and on the first day of school she had green hair. We all thought she was a punk. In fact, pool chlorine turned her hair green because not only does she have really thick hair, but she also has really blond hair. In sixth grade, this did not matter. We thought she was a wild NYC rebel.
Flash forward to our senior year of high school. Because seating was often alphabetical, we often sat near or next to one another ~ in particular in our honors English class (Christie B., do you need an adjective of the day?) and then in our economics class (the year of Mr. Driscoll's retirement...). We ended up working at Spencer's (what were our parents thinking?!?!) and the Shoreline Restaurant together as well.
I could ramble on and on about our antics that cemented our friendship. Like the weekend I was in NYC for job interviews and somehow ended up inappropriately and unintentionally groping Kelli...twice. Or why we end up at Friendly's even without children in tow. Or how she broke my kitchen table (ahem...), but I think anyone who knows even a little bit about me knows that Kelli is my person. So much so that when I married Kelly she referred to him as "our first husband" during her toast. (Do not pity him, he knew exactly what he was in for!)
In two years we are planning to go to Dollywood to celebrate our 40th birthdays (please note, she is older and wiser...I am just the tag-along young 'un). We have had this plan since we were in our early 20s and to be honest, I have no idea why we thought Dollywood would be the place to ring in our 40th birthdays, but we have been talking about it for 15+ years, so I think we are committed. It is one of my little prayers to join her there.
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.
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.
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.
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.
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!
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.
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?
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.
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.
Tuesday, February 21, 2012
Crap Veins
Today was my liver biopsy down at St. Peter's. I was very apprehensive because the radiologist at Glens Falls refused to do it because he deemed it "too difficult to biopsy." I was worried that St. Peter's wouldn't be able to do it, or may not get a good sample, which would mean more delays in starting treatment.
Fortunately, the team (5 men...what are the chances of that? It was 1 out of 230, based on the staffing stats provided to me by the guys. See, math IS everywhere.) was terrific. They had a good line, no major blood vessels blocking the path, and were able to get several samples. The hardest part of the whole thing was the 1.5 hours it took to get my IV line in and 3 tubes of blood drawn. Thank you, crap veins.
I have to say, since word got out about my staging, I have received so many messages, calls, and visits to help pull me up. I can't thank everyone enough. I asked for help being positive, and it worked...I can feel the tide turning, ever so slowly, away from the overwhelming sadness.
My dear friend Meg came up with the acronym SMAC (Suzanne Murphy Attacks Cancer). I like it. Perhaps a little too much. Who wants a t-shirt?
Fortunately, the team (5 men...what are the chances of that? It was 1 out of 230, based on the staffing stats provided to me by the guys. See, math IS everywhere.) was terrific. They had a good line, no major blood vessels blocking the path, and were able to get several samples. The hardest part of the whole thing was the 1.5 hours it took to get my IV line in and 3 tubes of blood drawn. Thank you, crap veins.
I have to say, since word got out about my staging, I have received so many messages, calls, and visits to help pull me up. I can't thank everyone enough. I asked for help being positive, and it worked...I can feel the tide turning, ever so slowly, away from the overwhelming sadness.
My dear friend Meg came up with the acronym SMAC (Suzanne Murphy Attacks Cancer). I like it. Perhaps a little too much. Who wants a t-shirt?
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