Hi everyone!
So I know that I haven't posted in a long time, but as I said in an earlier post, no news is good news! Doug is continuing to power through all of his remaining rounds of chemotheraphy like the tough guy that he is, and we are looking forward to some warmer weather!!!!
we have had lots of exciting news recently! I'll start with the great news from the doctor that we have received just this afternoon!! Doug had another set of tumor markers done recently, and his CEA is way way way down from when he started his chemo in January. In January, Doug's CEA was 150+. In late February/early March it was down to 97. Now, here in early April, his CEA number is 55!!!!!! hooray! As any survivor of PMP will tell you, the numbers on the tumor markers don't matter, we are looking for a TREND in numbers. And the trend is consistently going down as his chemotherapy goes on. So all good news from the medical front! We will go to visit Dr. Sardi on May 1st for Doug's first 6 month checkup and will let you guys all know how that goes.
So on to some more exciting news! Doug and I have set the date and the location for our wedding! We will be getting married on May 28, 2010 at the Hall of Springs in saratoga springs, NY. I am originally from saratoga so it will be nice to have the wedding in my hometown right around the corner from my parents' house! we are really looking forward to it. I am so lucky and so blessed to be able to call this man my future husband, and we have lots of exciting planning to do! Stay tuned for more details (because really, what girl doesn't love to talk about the planning of her wedding?)
I hope that you all have a wonderful Easter/Passover!
Love,
Lindsey and Doug
Tuesday, April 7, 2009
Monday, February 23, 2009
A Way to Help
Hi Everyone,
I just wanted to post this link on here:
www.pmpcure.org
This is a new foundation dedicated solely to raising funds for reasearch dedicated to finding treatment and a CURE for PMP. PMP is considered an "orphan disease", meaning it is very rare, and it is a part of the National Association of Rare Disorders (www.rarediseases.org). For a disease to be considered rare, it usually means that there are less than 200,000 cases in the United States. Because this disease is so rare, there is very little, if any, federal funding or National Institute of Health funding for research into a cure.
Prior to the forming of this group, there was no centralized PMP research foundation. This relatively brand new group has a goal of raising at least $100,000 by the end of March in order to award their first grant to further research, and a goal of at least $1,000,000 within the next 5 years. The research being done now is not sufficient for the challenges we face, and this group is the best thing to happen so far to research into this type of cancer.
We found out about this group through the PMP Bellybutton Club--an online community of caregivers and survivors. The board of directors is being presided over by members of this group, and it is an IRS designated 501(c)3 charitable organization.
Another cool thing is you can keep track of the goals online---right now the group is at $81,865--getting close to that $100k donation. You can also just go on to join their email distribution list to keep updated on what progress is being made.
I hope everyone is doing well! Doug and I continue to anxiously await springtime (Doug more than me, I think he's already played a few rounds of golf in his head!). We have a busy few months coming up, and are looking forward to some warmer and healthier times ahead!
Thanks for taking the time to read this quick post.
Love, Lindsey
I just wanted to post this link on here:
www.pmpcure.org
This is a new foundation dedicated solely to raising funds for reasearch dedicated to finding treatment and a CURE for PMP. PMP is considered an "orphan disease", meaning it is very rare, and it is a part of the National Association of Rare Disorders (www.rarediseases.org). For a disease to be considered rare, it usually means that there are less than 200,000 cases in the United States. Because this disease is so rare, there is very little, if any, federal funding or National Institute of Health funding for research into a cure.
Prior to the forming of this group, there was no centralized PMP research foundation. This relatively brand new group has a goal of raising at least $100,000 by the end of March in order to award their first grant to further research, and a goal of at least $1,000,000 within the next 5 years. The research being done now is not sufficient for the challenges we face, and this group is the best thing to happen so far to research into this type of cancer.
We found out about this group through the PMP Bellybutton Club--an online community of caregivers and survivors. The board of directors is being presided over by members of this group, and it is an IRS designated 501(c)3 charitable organization.
Another cool thing is you can keep track of the goals online---right now the group is at $81,865--getting close to that $100k donation. You can also just go on to join their email distribution list to keep updated on what progress is being made.
I hope everyone is doing well! Doug and I continue to anxiously await springtime (Doug more than me, I think he's already played a few rounds of golf in his head!). We have a busy few months coming up, and are looking forward to some warmer and healthier times ahead!
Thanks for taking the time to read this quick post.
Love, Lindsey
Sunday, February 15, 2009
Overdue Update
Hi everyone!
I know that it has been a while since I have updated the blog, so I'm sorry about that! But in our case, no news is good news! Doug just finished his 7th round of chemotherapy and is doing GREAT. The first few rounds that he had were really difficult on him and he was feeling really sick. However, we think that his body has adjusted to everything and he really hasn't felt nearly as sick or drained for the last couple of treatments. He still gets pretty tired and worn out during the three days he is being treated, but bounces back very well. He is even putting on a fair amount of weight! For those of you who saw him three months ago, it is a world of difference to now. At his lowest weight he was at about 117, and right now he is tipping the scales at 135-139 range! And of course, for those of you who know Doug know that deep down he is really just a big child, so bribery has been working really quite well to keep that weight going up! Basically, every time he hits another 10 pounds (130, 140, etc) he gets a present. Hey, whatever works, right?? Seriously---hes like a big kid, even down to sleeping with his stuffed "Mr. Met" (a present from me to him during his first consultation at Memorial Sloan Kettering in NYC). In all seriousness, he is eating everything, and I mean EVERYTHING, in sight, its great to have the problem of not being able to keep food in the house vs. the problem of not being able to keep food in HIM! :-) He looks great and besides the fatigue and some lingering nausea that gives him some trouble occasionally everything is going well. He's keeping all those chemo nurses on their toes too. He will have scans and blood tests done in April and we go to visit Dr. Sardi on May 1. Not getting nervous about it yet, but I'm sure we will as it gets closer.
Doug and I had a wonderful valentines day as an engaged couple :). Doug has been going to the casino pretty often since its only about 30 minutes from our house and its a good place to just get out and walk around. So he and his friend pete went there on Friday night to play some cards while I went out with my girlfriends, and he had a lucky night so the next day waiting for me was a beautiful new pink coach bag---perfect for Valentines day. I'm a very lucky girl to have such a thoughtful fiance---I told him he has great taste in purses, women, and diamonds haha. We had dinner at a local restaurant and besides some slow service, food was great. Tomorrow we are going to go to the UCONN v Pitt game in Hartford---we even have matching UCONN sweatshirts to wear even though its corny we love it. I'll try to get a good picture of us and post it on here so you can all see for yourself how good he looks! Besides that, we're just taking it easy, planning our wedding, and spending lots of time together and with friends having a great time.
I hope everyone is having a great February! I don't know about all of you, but we are definitely ready for some warmer weather! we had a teaser earlier this week with 60 degrees on Wednesday but that has passed us by unfortunatly :-). I hope everyone is well, and I'll post some pictures from the game on here later in the week!
Love, Lindsey
I know that it has been a while since I have updated the blog, so I'm sorry about that! But in our case, no news is good news! Doug just finished his 7th round of chemotherapy and is doing GREAT. The first few rounds that he had were really difficult on him and he was feeling really sick. However, we think that his body has adjusted to everything and he really hasn't felt nearly as sick or drained for the last couple of treatments. He still gets pretty tired and worn out during the three days he is being treated, but bounces back very well. He is even putting on a fair amount of weight! For those of you who saw him three months ago, it is a world of difference to now. At his lowest weight he was at about 117, and right now he is tipping the scales at 135-139 range! And of course, for those of you who know Doug know that deep down he is really just a big child, so bribery has been working really quite well to keep that weight going up! Basically, every time he hits another 10 pounds (130, 140, etc) he gets a present. Hey, whatever works, right?? Seriously---hes like a big kid, even down to sleeping with his stuffed "Mr. Met" (a present from me to him during his first consultation at Memorial Sloan Kettering in NYC). In all seriousness, he is eating everything, and I mean EVERYTHING, in sight, its great to have the problem of not being able to keep food in the house vs. the problem of not being able to keep food in HIM! :-) He looks great and besides the fatigue and some lingering nausea that gives him some trouble occasionally everything is going well. He's keeping all those chemo nurses on their toes too. He will have scans and blood tests done in April and we go to visit Dr. Sardi on May 1. Not getting nervous about it yet, but I'm sure we will as it gets closer.
Doug and I had a wonderful valentines day as an engaged couple :). Doug has been going to the casino pretty often since its only about 30 minutes from our house and its a good place to just get out and walk around. So he and his friend pete went there on Friday night to play some cards while I went out with my girlfriends, and he had a lucky night so the next day waiting for me was a beautiful new pink coach bag---perfect for Valentines day. I'm a very lucky girl to have such a thoughtful fiance---I told him he has great taste in purses, women, and diamonds haha. We had dinner at a local restaurant and besides some slow service, food was great. Tomorrow we are going to go to the UCONN v Pitt game in Hartford---we even have matching UCONN sweatshirts to wear even though its corny we love it. I'll try to get a good picture of us and post it on here so you can all see for yourself how good he looks! Besides that, we're just taking it easy, planning our wedding, and spending lots of time together and with friends having a great time.
I hope everyone is having a great February! I don't know about all of you, but we are definitely ready for some warmer weather! we had a teaser earlier this week with 60 degrees on Wednesday but that has passed us by unfortunatly :-). I hope everyone is well, and I'll post some pictures from the game on here later in the week!
Love, Lindsey
Thursday, January 1, 2009
Happy 2009!!
Happy New Year everyone!
I know that we haven't posted an update on the blog recently, so I thought I would post here tonight as I sit back and start recovering from the massive amounts of FOOD the holidays always seem to bring with it! :) I also wanted to give you an update of what has been going on with Doug and I, and how Doug is doing with chemo so far.
Fun stuff first! Doug and I are doing great! We are enjoying our time together as a "newly engaged couple" and are looking forward to starting the wedding planning in the next week or so. we have a lot to do, lucky that I have such a great mom who is going to help us with everything! We had a nice low-key New Years Eve with dinner and watching the ball drop at home, and then we had a great day together today since I didn't have to work. We started out with a huge homemade breakfast and decided we were going to "do nothing" all day, although we actually ended up doing a lot! Which brings me to the pictures below. well, first a bit of background. When Doug moved in to the condo with me in glastonbury where we live currently, I told him that the finished portion of our basement was his to do with what he wanted. He could get a pool table (although it wouldn't fit) or make it a game room or whatever he wanted. So he brought in a bar that had belonged to his parents and decided he was going to have a "man room" with the bar, big couches, tv, and lots and lots of sports pictures on the wall. Over the summer we did some work on it but we were, understandably, preoccupied with everything that was going to happen in the fall. So for Christmas this year I bought him a picture from the 1986 World Series (which, for all of you non-baseball folks the Mets won--for all of you sports fans out there it is the signed mookie wilson picture). He loved it and it reignited our desire to really make the room nice. So today in our travels Doug decided that he wanted a specific street sign for the Giants, and when we got to the sports memorobelia store, he also saw something else that caught his eye-- a picture from the superbowl last year where Osi Umenyura knocked Tom Brady down....(a great moment--sorry Pats fans!) that was signed and framed for a pretty good price. Well, he decided to buy the picture, and ended up getting a suprise huge discount--like 30% I think it was!- even better! So below you can see the two walls that Doug has gotten done (with my help---he's the supervisor and i'm really the manual labor.....hammering and nailing and everything. and trust me, with mr. anal-retentive-this-side-is-3/4-of-a-millimeter-higher-than-the-other it is not always an easy or a short task! I joke I joke.....he'll even admit it though!). The first picture is of his Mets wall, and the second is of his Giants wall!
Here is a picture of Doug's "golfers wall" including a couple of Phil Mickelson and of course John Daly, complete with mullet:
And of course, here is the picture that Doug can't wait to hang up---his favorite singer in the whole wide world, Ryan Cabrera. Doug thinks that Ryan is very rugged and manly and aspires to have the same haircut. You can tell by Doug's smile how excited he is about it.
So this is a great project for Doug to work on while he's stuck at home! The room looks great and he can't wait to show his friends when its all done--he's already decided that he wants to have everyone over for a party in the basement :).
As far as how Doug is doing health-wise, he is as we speak in the middle of his fourth round of chemotherapy---1/3 done!! It has been rough on him as the treatment and regimen he is on is very aggressive. don't get us wrong, aggressive is a good thing! But it hasn't been easy--chemo is tough on anyone who has to go through it. Luckily Doug is on 14 day cycles, so he usually has a week where he feels yuck and then a week he feels good. We're still working with Dr. Hegde and his crew to try to get his medicines right so that he doesn't feel bad more than he has to, but we're not quite there yet. But, as always, he's being very tough and very brave. UCONN has a great team of nurses that take care of him when he goes in for his treatments, and he's definitely a favorite of theirs (can you blame them?). Its a sad place though, the treatment room is always busy and there are a lot of people there who are very very sick, so its a very tough place to have to spend several hours. But as always, Doug keeps up his great spirits and always keeps those nurses on their toes! As Doug--who as I always maintain is much wiser than I am--always says, he's giving up a few months in order to exchange that for 50 years. And that lucky boy is stuck with me for the whole time!! :-) hahahaha.
I hope that everyone has a very happy and HEALTHY new year! Please keep our fellow PMP families in your thoughts and prayers, as the new year starts off there are so many people continuing their journey with this disease, as well as several people just at the beginning. It gets harder as you get to know other people, even just via the interet message boards, and get to know their struggles and successes.
In the meantime, Doug and I are going to keep our eyes out for other secret sales (Doug just declared from the couch that 2009 is our year, since it started out with such a great find!), we're going to look forward to starting to plan our wedding, and take some time to relax after the craziness of the holidays. I hope this post finds everyone well, and we hope to see everyone soon!
love,
Lindsey
Subscribe to:
Posts (Atom)
