In the span of just a couple of days, we've heard from several of the scholarship recipients from NCCF (and yes, we are working on the "Thank You" letter for 2008). We even got a picture of one of them proudly holding his check. And last night, Dan and I talked to a two-time awardee, and hope to meet him in a few weeks when he travels to DC. We've made an unlikely connection to people we never would have met if not for cancer- a PHD candidate in CA, a young man with a heartbreaking childhood who recently turned the corner mentally and is excited about his modern dance classes, a young man who wants nothing more than work on airplane engines.
I admit- I had gotten to the point that I didn't think that the awards would make much of a difference to these people considering the amount of money they owed in medical bills and tuition expenses. I was wrong on so many levels. It's not so much the money as it is the fact that some of these people are chosen to receive something based on their personal stories. Many of these young adults aren't A students or homecoming kings. They may have been the people that were passed over in school. But to us, they are A players in the game of life. And although the circumstances under which we've connected to them are awful, they become a part of our extended team and make us want to be better people.
So after all the joy of hearing from the scholarship winners, I got a totally random email today from someone I've never met. It was just a reminder to me to keep moving forward through the tough days. And how lucky I am that people reach out to me... because the common thread in this journey tying us total strangers together is none of us wants to go it alone.
"My 31 year old brother was diagnosed with stage IV lung cancer on Dec. 30th. Much like your story, it came as a total and utter shock. My first internet search on the subject was a nightmare. My husband, who is a Pharm D student, warned me not to look at the statistics and sad stories; he said to stay positive and search for success stories. Given my brother's age and fitness level, much like Dan, he did not fit in with the typical lung cancer patient profile so I started looking for younger people with this disease that were already headed down the path we were about to take. Dan was the first person I found. I have since found and connected with some other lung cancer survivors and/or their family members. It has been so wonderful to finally feel like we are not alone."
Thursday, January 29, 2009
Tuesday, January 27, 2009
Over 100 Billion hamburgers served...
As I’ve said before, the week following chemotherapy I struggle to put down enough calories even with the Jack LaLanne juicer or ordering “The Hulk” at the Smoothie King. Nothing looks appealing, not even some of my healthy favorites. So when you have a green light in life to eat anything you want, you might as well take advantage of it.
Over the past week, I’ve stopped by McDonald’s twice for dinner. Both times, I ordered my favorite, Value Meal #1 - the Big Mac. What is it that makes the Big Mac so special? Is it the sauce? Does the cool song bring you in?
"Two all beef patties, special sauce, lettuce, cheese, pickles, onions on a sesame seed bun…."
Is there even another burger in the “fast food” community that can even compete? Some people like their coffee and others their fries, but for me going to McDonald’s it is all about the Big Mac.
Going 2x in a week is probably enough to satisfy my fast food cravings for a year, but I’m a huge fan, especially of the sauce, and what better way to scarf down probably more than double my calorie count for the day. The thing that strikes me the most about McDonald’s, however, is the smell. It is just unmistakable. The overriding stench seems to last forever too, following you wherever you go. Which reminds me, I need to go take out the trash….
Over the past week, I’ve stopped by McDonald’s twice for dinner. Both times, I ordered my favorite, Value Meal #1 - the Big Mac. What is it that makes the Big Mac so special? Is it the sauce? Does the cool song bring you in?
"Two all beef patties, special sauce, lettuce, cheese, pickles, onions on a sesame seed bun…."
Is there even another burger in the “fast food” community that can even compete? Some people like their coffee and others their fries, but for me going to McDonald’s it is all about the Big Mac.
Going 2x in a week is probably enough to satisfy my fast food cravings for a year, but I’m a huge fan, especially of the sauce, and what better way to scarf down probably more than double my calorie count for the day. The thing that strikes me the most about McDonald’s, however, is the smell. It is just unmistakable. The overriding stench seems to last forever too, following you wherever you go. Which reminds me, I need to go take out the trash….
Friday, January 23, 2009
Change of Scenery
So I started a new job last week. All in all, it’s going pretty well other than the fact that my commute is now 40-45 minutes versus 15-20 minutes at my old job. It’s a little weird to enter into an environment where no one has any association of me to cancer. I am just a “normal” co-worker, wanting to do well, find someone to eat lunch with and learn how to connect to the printer. I almost feel dishonest keeping it to myself for now, because cancer has become such a big part of our lives and definitely influence my priorities. But there is something nice about feeling normal- just as Dan did when he played on the softball team and no one knew he had cancer. People just ask me how I am doing and questions about our wedding or where we live… normal conversation.
This is also a time where I wish I could pull out the old cancer handbook and turn to the chapter “When to Tell Your Boss Your Fiancé Has Cancer & You’d Like to Go to Treatments with Him.” At my old job, I had the benefit of an established track record by the time I met Dan and asked for a flexible schedule on his treatment days. However, after moving through 4 bosses in rapid succession, my luck eventually ran out.
My last position left me reporting into someone my own age who wasn’t really equipped to know how to manage the situation. I should clarify- I didn’t need much management, other than the peace of mind that when I was going to be out of the office on the afternoon of a treatment, I wouldn’t be expected to immediately respond to an email. My last “supervisor” just ignored the whole situation, and continued to send a million emails or requests and even tried to schedule meetings on occasion. As someone who always delivers at work, slept with her Blackberry & could pull 14 hour days, I knew I would do whatever was asked x10 (of course) though it left with me a lot of anxiety. On top of that, when Dan was in the hospital last spring for an un-related virus, I had all my work pulled from me the week I returned.
That gem of a response left me so fearful that I never told anyone when Dan’s cancer spread back in July. I didn’t want more work taken from me and I didn’t want to seem like I couldn’t contribute at the same levels as everyone else. So I spent the last 6 months there praying I could dodge a major incident at work that might conflict with a treatment day. It was mentally exhausting. And on my last day, I pretty much lost it when I was called in & given the news that I was being let go. Not because I was so upset that I lost my job, but because it was the end of a long & difficult situation. That, and it was also the day Dan’s hair started falling out and I had to go home and shave his head! Good timing, huh?
I didn’t (and don’t) expect to be treated differently at work because Dan had cancer. In fact, I needed to work to give my life structure and have a sense of accomplishment. I didn’t want to keep my job because someone felt sorry for me, but I also didn’t want to lose work because of the situation. I don’t know when I will let my current employer know what is going, though it probably won’t be long (especially since people are curious as to why we aren’t taking a honeymoon after the wedding, and someone asked if I was pregnant!). I can’t bear the thought of going to work and having to sit there while Dan is at Hopkins. After all, he never gets to take a break, so it feels unfair for me to take a treatment or two off.
I am not writing this to complain (ok, maybe a little), but rather to remind people that there is no way of knowing the right things to do if you find yourself faced with a family medical issue. If you do happen to know a colleague or a direct report dealing with a similar issue, I hope you’ll give them a break. I hope you’ll make every effort to let that person spend time with family. It makes a huge difference when people sit with us during chemo, and it is invaluable to me to be with Dan during treatment. I hope you’ll ask them how they are doing, and mean it. Some things are more important than meeting earnings, churning out another powerpoint deck or getting ahead.
This is also a time where I wish I could pull out the old cancer handbook and turn to the chapter “When to Tell Your Boss Your Fiancé Has Cancer & You’d Like to Go to Treatments with Him.” At my old job, I had the benefit of an established track record by the time I met Dan and asked for a flexible schedule on his treatment days. However, after moving through 4 bosses in rapid succession, my luck eventually ran out.
My last position left me reporting into someone my own age who wasn’t really equipped to know how to manage the situation. I should clarify- I didn’t need much management, other than the peace of mind that when I was going to be out of the office on the afternoon of a treatment, I wouldn’t be expected to immediately respond to an email. My last “supervisor” just ignored the whole situation, and continued to send a million emails or requests and even tried to schedule meetings on occasion. As someone who always delivers at work, slept with her Blackberry & could pull 14 hour days, I knew I would do whatever was asked x10 (of course) though it left with me a lot of anxiety. On top of that, when Dan was in the hospital last spring for an un-related virus, I had all my work pulled from me the week I returned.
That gem of a response left me so fearful that I never told anyone when Dan’s cancer spread back in July. I didn’t want more work taken from me and I didn’t want to seem like I couldn’t contribute at the same levels as everyone else. So I spent the last 6 months there praying I could dodge a major incident at work that might conflict with a treatment day. It was mentally exhausting. And on my last day, I pretty much lost it when I was called in & given the news that I was being let go. Not because I was so upset that I lost my job, but because it was the end of a long & difficult situation. That, and it was also the day Dan’s hair started falling out and I had to go home and shave his head! Good timing, huh?
I didn’t (and don’t) expect to be treated differently at work because Dan had cancer. In fact, I needed to work to give my life structure and have a sense of accomplishment. I didn’t want to keep my job because someone felt sorry for me, but I also didn’t want to lose work because of the situation. I don’t know when I will let my current employer know what is going, though it probably won’t be long (especially since people are curious as to why we aren’t taking a honeymoon after the wedding, and someone asked if I was pregnant!). I can’t bear the thought of going to work and having to sit there while Dan is at Hopkins. After all, he never gets to take a break, so it feels unfair for me to take a treatment or two off.
I am not writing this to complain (ok, maybe a little), but rather to remind people that there is no way of knowing the right things to do if you find yourself faced with a family medical issue. If you do happen to know a colleague or a direct report dealing with a similar issue, I hope you’ll give them a break. I hope you’ll make every effort to let that person spend time with family. It makes a huge difference when people sit with us during chemo, and it is invaluable to me to be with Dan during treatment. I hope you’ll ask them how they are doing, and mean it. Some things are more important than meeting earnings, churning out another powerpoint deck or getting ahead.
Tuesday, January 20, 2009
Healthcare in America
With the extra 3 million people in town for the inauguration, Meg and I had 4 day weekend. Listening to Obama's speech today, however, I couldn't help but think about the challenges he faces in the next 4 years. Beyond the economic crisis and foreign affairs, what's going to happen to our healthcare system? I think I'm too tired tonight to get into a larger debate of what he stands for and what I want to see happen. (You can read about his healthcare policy here - http://www.barackobama.com/issues/healthcare/)
I just hope for cancer survivors everywhere - the uninsured and newly diagnosed or the underinsured who have to worry about the out of pocket expenses because of costly chemotherapy treatments or lack of coverage on what basic things that we take for granted - that the new administration's healthcare policy will be to the benefit of all cancer survivors. Going through a cancer diagnosis and all that it entails is enough to worry about it. It is stressful, taxing, and mentally challgenging. I am very lucky in that I am blessed with wonderful health insurance and couldn't imagine the added pressure of having to worry about finances.
Tonight, I just have one message and that is to educate and urge my friends to read the fine print of their employers health coverage, to investigate their options, and to pay for the best medical care possible. The incremental amount from each level of health coverage is usually not that much and very affordable. You never know when you're going to need it and for those that say, "It won't happen to me" - well it happened to me.
I just hope for cancer survivors everywhere - the uninsured and newly diagnosed or the underinsured who have to worry about the out of pocket expenses because of costly chemotherapy treatments or lack of coverage on what basic things that we take for granted - that the new administration's healthcare policy will be to the benefit of all cancer survivors. Going through a cancer diagnosis and all that it entails is enough to worry about it. It is stressful, taxing, and mentally challgenging. I am very lucky in that I am blessed with wonderful health insurance and couldn't imagine the added pressure of having to worry about finances.
Tonight, I just have one message and that is to educate and urge my friends to read the fine print of their employers health coverage, to investigate their options, and to pay for the best medical care possible. The incremental amount from each level of health coverage is usually not that much and very affordable. You never know when you're going to need it and for those that say, "It won't happen to me" - well it happened to me.
Thursday, January 15, 2009
Are You Mad?
This was a question posed to me last weekend by a friend of mine. Initially, it took me by surprise. For the most part, people's questions around cancer pretty much stop at "How is Dan feeling?" (this week, not so good). And if you're reading this, chances are you are generally met with a positive attitude, and a slightly glossed over version of our life. The real tough questions or conversations tend to happen only between just Dan & I. Even if we told people, they'd still have no idea what really go through- only we do.
But I am sure this is a question many people ponder so I'll give you an honest answer. I think I am probably more mad than I realize. How can we not all be at this situation? However, if I stopped to be mad, I might never get anything done! And the way I look at it, there is something about being mad that lights a fire under people- hence the term "fired up". You just have to find a way to channel it into something positive... actionable. I'd take being mad over being depressed or morose any day. I can't do anything to change the course that has brought us here, and in many ways, I wouldn't want to change a thing. All I can do is take what I've learned & experienced and make something positive out of it.
Although, I do think anger is closely followed by exasperation. As in- if you had any clue what was going on in my life, you wouldn't (insert one of the following).... give me a parking ticket, give me bad customer service, let me go from my job....
But that is the darndest thing about cancer, and how we try to look at the overall experience. Life still keeps moving whether you like it or not, and you have to make the choice to move along with it, anger & all.
But I am sure this is a question many people ponder so I'll give you an honest answer. I think I am probably more mad than I realize. How can we not all be at this situation? However, if I stopped to be mad, I might never get anything done! And the way I look at it, there is something about being mad that lights a fire under people- hence the term "fired up". You just have to find a way to channel it into something positive... actionable. I'd take being mad over being depressed or morose any day. I can't do anything to change the course that has brought us here, and in many ways, I wouldn't want to change a thing. All I can do is take what I've learned & experienced and make something positive out of it.
Although, I do think anger is closely followed by exasperation. As in- if you had any clue what was going on in my life, you wouldn't (insert one of the following).... give me a parking ticket, give me bad customer service, let me go from my job....
But that is the darndest thing about cancer, and how we try to look at the overall experience. Life still keeps moving whether you like it or not, and you have to make the choice to move along with it, anger & all.
Tuesday, January 13, 2009
Down....but not out!
A little over a month ago, the Philadelphia Eagles were heading towards an abbreviated season. With a record of 5-5-1 and the Giants and Cowboys ahead of them in the standings, the chances of reaching the playoffs were slim to none. The city was celebrating their World Champion Phillies and questioning the Eagles desire and devotion. Thinking about the city of brotherly love, or more realistically the love/hate relationship the fans share with their sports teams, I can't help but think of the quote from famed coached Vince Lombardi - "Winning isn't everything; but the only thing."
In the fight against cancer, that quote couldn't be more true. While 4,000 people are diagnosed everyday, it is a sad reality that over 1,500 people today will die from the dreaded disease. Winning and surviving is the only thing that matters. This week for me in terms of my chemotherapy schedule is my tough week. I had chemo on Wednesday and 4-5 days into the regimen, I have to deal with mucousitis, mouth sores, coughing, neuropathy in the fingers, fatigue, bloody noses, difficulty swallowing, and did I mention mucousitis. It can be difficult to put one foot in front of the other and times Meg and I can feel down and out.
With 5 weeks to go in the regular season, the Eagles were down and out. During those last 5 weeks, however, they dug deep. With the right combination of offense, defense, and special teams the Eagles went 4-1 down the stretch. Facing the pressure, they overcame adversity and the odds that were stacked against them. Even needing the impossible to happen the last week in week 17 (having two high caliber teams lose to 2 historically awful teams), it all came together and it's a beautiful thing to see.
What about me? What do I do to survive each week? Looking at it in football terms, the chemotherapy seems to be on the offensive. I've got to find the right amount of defense in terms of hydrating my self with plenty of liquids, getting enough nutrition with smoothies, milkshakes, and soft food that is easy to swallow. I wish I could say it was all that easy! These few days of the chemotherapy schedule, the side-effects usually win. I become quiet and rundown, but I try to remind myself like the Eagles and football it is only one quarter or one half of the schedule. It is a tough balancing act, but experience in the fight against cancer helps out a lot. It helps me not worry so much about that ache, cough, or mucousitis. However, during the really tough times, I call in the special teams - I call in Meg and she always ready to deliver.
Congratulations to the Eagles! Your winning attitude in the game of football will carry you through the playoffs, not to mention carry a few of us through the game of life!
In the fight against cancer, that quote couldn't be more true. While 4,000 people are diagnosed everyday, it is a sad reality that over 1,500 people today will die from the dreaded disease. Winning and surviving is the only thing that matters. This week for me in terms of my chemotherapy schedule is my tough week. I had chemo on Wednesday and 4-5 days into the regimen, I have to deal with mucousitis, mouth sores, coughing, neuropathy in the fingers, fatigue, bloody noses, difficulty swallowing, and did I mention mucousitis. It can be difficult to put one foot in front of the other and times Meg and I can feel down and out.
With 5 weeks to go in the regular season, the Eagles were down and out. During those last 5 weeks, however, they dug deep. With the right combination of offense, defense, and special teams the Eagles went 4-1 down the stretch. Facing the pressure, they overcame adversity and the odds that were stacked against them. Even needing the impossible to happen the last week in week 17 (having two high caliber teams lose to 2 historically awful teams), it all came together and it's a beautiful thing to see.
What about me? What do I do to survive each week? Looking at it in football terms, the chemotherapy seems to be on the offensive. I've got to find the right amount of defense in terms of hydrating my self with plenty of liquids, getting enough nutrition with smoothies, milkshakes, and soft food that is easy to swallow. I wish I could say it was all that easy! These few days of the chemotherapy schedule, the side-effects usually win. I become quiet and rundown, but I try to remind myself like the Eagles and football it is only one quarter or one half of the schedule. It is a tough balancing act, but experience in the fight against cancer helps out a lot. It helps me not worry so much about that ache, cough, or mucousitis. However, during the really tough times, I call in the special teams - I call in Meg and she always ready to deliver.
Congratulations to the Eagles! Your winning attitude in the game of football will carry you through the playoffs, not to mention carry a few of us through the game of life!
Wednesday, January 7, 2009
When Life Hands You Lemons...
You break out the juicer & make lemonade. Or orange carrott juice with a splash of apple.
One of the gifts we received for Christmas was the Jack Lalanne juicer. You may have seen the infomercial with Jack shoving entire oranges, apples and vegetables into the juicer and producing massive amounts of juice. Well, we now own one, and it's about as big as our kitchen. We took it for a test drive last night, and after almost a full bag of oranges & 45 minutes, we produced 2 cups of juice. The juice itself was great. The labor required- not so much.
The juicer is just another of our new tools in life. There is about 5-7 days in the chemo cycle that hit Dan really hard. Side effects make it hard for him to get food down his very sore throat. Even though you'd think milk shakes would do the trick, all the sugar isn't helpful. So now we will try the juicer and switch it up.
One of the things I have a hard time with is Dan's eating. The maternal instinct kicks in when he isn't feeling well, and my immediate solution is to try and fix him something to eat or run out for whatever indulgence I can think to offer. He has a license to eat whatever he wants, but often will pass on the bad stuff. I am amazed, because I'd eat ice cream and mashed potatoes all day long if I could. Dan claims to only have lost about 5 pounds since starting treatment, but I keep trying to fatten him up like he's a Christmas ham. I seem to only suceed in 1) wasting a lot of food that goes to waste in the fridge & 2) eating things myself that I never would (not helpful when trying to fit in a wedding dress!).
So now that I have a new BFF in Jack the Juicer, maybe we'll find a good solution. Of course, we may go bankrupt buying fruits & vegetables. And it make takes us 45 minutes to make 2 cups of juice after you peel everything (note- you actually can't put whole fruits in Jack- liars!). But there is something mentally refreshing about putting nothing put straight fruits & veggies into your system.
Oh yeah- Dan had treatment on Wednesday. Nothing unusual. Funny how quickly you slip back into a routine, no matter what it is. Hopefully we'll get to see Dan's friends someplace other than the hospital soon. But it's great to see them, and it is really a lift to the spirits to both of us when they stop by.
PS- We made our own "infomercial" if you'd like to see below. Note that the counter that Jack sits on is the total counter space in the kitchen.
PPS- Blogger won't upload my video. We should have used the Mac for this blog!
One of the gifts we received for Christmas was the Jack Lalanne juicer. You may have seen the infomercial with Jack shoving entire oranges, apples and vegetables into the juicer and producing massive amounts of juice. Well, we now own one, and it's about as big as our kitchen. We took it for a test drive last night, and after almost a full bag of oranges & 45 minutes, we produced 2 cups of juice. The juice itself was great. The labor required- not so much.
The juicer is just another of our new tools in life. There is about 5-7 days in the chemo cycle that hit Dan really hard. Side effects make it hard for him to get food down his very sore throat. Even though you'd think milk shakes would do the trick, all the sugar isn't helpful. So now we will try the juicer and switch it up.
One of the things I have a hard time with is Dan's eating. The maternal instinct kicks in when he isn't feeling well, and my immediate solution is to try and fix him something to eat or run out for whatever indulgence I can think to offer. He has a license to eat whatever he wants, but often will pass on the bad stuff. I am amazed, because I'd eat ice cream and mashed potatoes all day long if I could. Dan claims to only have lost about 5 pounds since starting treatment, but I keep trying to fatten him up like he's a Christmas ham. I seem to only suceed in 1) wasting a lot of food that goes to waste in the fridge & 2) eating things myself that I never would (not helpful when trying to fit in a wedding dress!).
So now that I have a new BFF in Jack the Juicer, maybe we'll find a good solution. Of course, we may go bankrupt buying fruits & vegetables. And it make takes us 45 minutes to make 2 cups of juice after you peel everything (note- you actually can't put whole fruits in Jack- liars!). But there is something mentally refreshing about putting nothing put straight fruits & veggies into your system.
Oh yeah- Dan had treatment on Wednesday. Nothing unusual. Funny how quickly you slip back into a routine, no matter what it is. Hopefully we'll get to see Dan's friends someplace other than the hospital soon. But it's great to see them, and it is really a lift to the spirits to both of us when they stop by.
PS- We made our own "infomercial" if you'd like to see below. Note that the counter that Jack sits on is the total counter space in the kitchen.
PPS- Blogger won't upload my video. We should have used the Mac for this blog!
Monday, January 5, 2009
Welcome to 2009!
Over the New Year, Meg and I headed to Marco Island, FL, for a well deserved vacation.
Surprisingly enough, the two of us had never been on a true vacation together other than long weekend trips which were usually connected to work or a cancer conference. I’m not usually a beach person, but the weather and location made it easy.
Our hotel was a 5 star resort right on the beach. The days were filled with Meg trying to figure out how to keep her tan until March and me hanging out underneath the umbrella sipping on virgin watermelon or lemon fruit slushes.
One day we headed to the spa thanks to Meg’s brother and sister-in-law and another afternoon was spent on a wave-runner tour with Meg trying to act like Mario Andretti criss crossing over the wakes of the other jet-skis.
Needless to say, it was so much needed R+R. Looking back, our Christmas and holiday break was wonderful as it was great to see and hang out with our families, nieces and nephews. I feel very blessed and here’s to a happy and healthy 2009!
View from our room at the Marco Island Marriott. We highly recommend the resort!
Watching the sunset
The sunset
Surprisingly enough, the two of us had never been on a true vacation together other than long weekend trips which were usually connected to work or a cancer conference. I’m not usually a beach person, but the weather and location made it easy.Our hotel was a 5 star resort right on the beach. The days were filled with Meg trying to figure out how to keep her tan until March and me hanging out underneath the umbrella sipping on virgin watermelon or lemon fruit slushes.
One day we headed to the spa thanks to Meg’s brother and sister-in-law and another afternoon was spent on a wave-runner tour with Meg trying to act like Mario Andretti criss crossing over the wakes of the other jet-skis.
Needless to say, it was so much needed R+R. Looking back, our Christmas and holiday break was wonderful as it was great to see and hang out with our families, nieces and nephews. I feel very blessed and here’s to a happy and healthy 2009!
View from our room at the Marco Island Marriott. We highly recommend the resort!
Watching the sunset
The sunset
Ringing in 2009 on the beach
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