Happy Thanksgiving to all!
Thanksgiving has always been at the top of my list for holidays...family, friends, food, football, and the Macy's Thanksgiving Day Parade!! It just doesn't get better! I have always been thankful on Thanksgiving but this year in particular I have so much to be grateful and thankful for. We are in Seattle this year in a wonderful rented house with my brother-in-law, sister-in-law, and my beautiful niece. Great friends of ours live about 5 minutes away and we will be enjoying the Thanksgiving meal with all of us...6 adults and 4 kids! At this time last year things were not nearly this positive although we tried very hard to make it great. It is so nice to know that this year's Thanksgiving is already giving us wonderful memories and fun adventures.
A memory from this Thanksgiving that I will never forget and feel is important to share, was a great way to start this vacation. On our flight to Seattle from Dallas-Fort Worth (I know...a really direct way to get here from Boston) there were several service men, clearly traveling home after being away for varying lengths of time. Sitting across the aisle from us was a young man in army fatigues who smiled at Grace regularly throughout the flight. When we had landed in Seattle and were waiting to get off the plane he asked me "how old is your daughter?" "3 and a half" I said and then asked if he had a little one at home. His face lit up as he responded, "I'm about to meet her, she's 2 months and 1 week old!" It was all I could do not to cry on the spot. We were then lucky enough to see the reunion and meeting at the gate. What an amazing thing to see...a young father seeing his wife after a 7 month deployment and meeting his baby girl for the first time. There is something to be thankful for.
I feel so very blessed to be here today and am so very thankful for the many, many people who helped to make that possible. This last year has been difficult and yet here I am on vacation with my family enjoying each moment as they come.
Happy Thanksgiving to all. Please know love and support abound in your direction from all over and that to be grateful and thankful each day is a gift that you can give and receive.
Thursday, November 25, 2010
Thursday, November 18, 2010
Bring on the positive!
When you've had a year like the one I have just experienced it is hard not to wait for "the other shoe to drop". This is why every time I see my transplant Doctor I ask him "Do you still think I'm going to live to be old?" and every time he smiles and says yes and then I think he hopes I don't start to cry!
I had a fairly simple day at NIH today but a whole lot of waiting so a pretty long day. I started with bloodwork (took 2 sticks but they got what they needed), then a visit with the OB-GYN, few details need sharing here, but the basics is that I signed onto a research protocol that they are doing to learn more about the Gardisil vaccine, specifically in women who have undergone a bone marrow transplant. So no one starts to worry that there is something else wrong with me...there isn't. I signed up because I am here today because other people were willing to sign up for research and if my doing this protocol helps to save a life in the future than by all means I'm on board. After that appointment was my CT scan...an exercise in hurry up and wait, and wait, and wait for a scan that took all of 3 minutes (if that long). I then grabbed a quick lunch and headed up early to the Doctor's office where I inhaled my food while talking with a patient who will be having the same transplant as I did and is in prep mode (it looks like his transplant will be in January). He and I have been in contact via email and phone and it was great to meet him in person, I'm looking forward to hopefully meeting his wife tomorrow.
Now onto more waiting, and waiting, and waiting. But this waiting was well worth it, here is what I learned today: my CT scan showed no changes in size or shape (this is a good thing) just a small mass of scar tissue in my chest, my bloodwork looks good and when I get home I can start having it done every other week instead of every week! My next visit to NIH isn't for another 8 weeks and they don't plan on doing any type of scan until next April! Lastly, they've dropped some of the dosages of some of my medications and as I said before reiterated that I'm going to get to grow old! I may be forgetting some things here but I'm really just so excited about it all. The other shoe didn't drop and its always nice to hear from the team how great I look and how wonderfully they feel I'm doing!
Lastly, I had a wonderful dinner with a great friend that I have met through all of this and if she reads this I want to thank her again for making the time for me. Its always great to see her!
So, give the ones you love a big giant hug and as Thanksgiving approaches remember to be thankful everyday even the days that seem to stink.
I had a fairly simple day at NIH today but a whole lot of waiting so a pretty long day. I started with bloodwork (took 2 sticks but they got what they needed), then a visit with the OB-GYN, few details need sharing here, but the basics is that I signed onto a research protocol that they are doing to learn more about the Gardisil vaccine, specifically in women who have undergone a bone marrow transplant. So no one starts to worry that there is something else wrong with me...there isn't. I signed up because I am here today because other people were willing to sign up for research and if my doing this protocol helps to save a life in the future than by all means I'm on board. After that appointment was my CT scan...an exercise in hurry up and wait, and wait, and wait for a scan that took all of 3 minutes (if that long). I then grabbed a quick lunch and headed up early to the Doctor's office where I inhaled my food while talking with a patient who will be having the same transplant as I did and is in prep mode (it looks like his transplant will be in January). He and I have been in contact via email and phone and it was great to meet him in person, I'm looking forward to hopefully meeting his wife tomorrow.
Now onto more waiting, and waiting, and waiting. But this waiting was well worth it, here is what I learned today: my CT scan showed no changes in size or shape (this is a good thing) just a small mass of scar tissue in my chest, my bloodwork looks good and when I get home I can start having it done every other week instead of every week! My next visit to NIH isn't for another 8 weeks and they don't plan on doing any type of scan until next April! Lastly, they've dropped some of the dosages of some of my medications and as I said before reiterated that I'm going to get to grow old! I may be forgetting some things here but I'm really just so excited about it all. The other shoe didn't drop and its always nice to hear from the team how great I look and how wonderfully they feel I'm doing!
Lastly, I had a wonderful dinner with a great friend that I have met through all of this and if she reads this I want to thank her again for making the time for me. Its always great to see her!
So, give the ones you love a big giant hug and as Thanksgiving approaches remember to be thankful everyday even the days that seem to stink.
Tuesday, November 16, 2010
Insomia, Anxiety, Control
Tomorrow I leave for Bethesda and my 4th check in with my transplant team seen moving back to Massachusetts in July. To be honest I haven't been sleeping all that well, my anxiety levels are up, and I seem to be trying to find ways to control everything in sight. Sorry to my family for that last one! The truth of it all is though, that I (intellectually speaking) have nothing to be afraid of...no new symptoms, only good bloodwork, feeling great, lots of energy (ran a mile yesterday, plan on another one today), and a medical team that seems to think I'm doing pretty darn well. It's difficult though to remember that just because the other shoe has dropped over and over again in the past, that is not a predictor of it dropping in the future. I am living each day one day at a time and am grateful for each of these days, for every moment that I have to live and give.
My lovely and sweet husband often jokes about my time "not working" with the image of me laying on the couch eating bonbons all day! I will admit that I've embraced these jokes and even encourage them...laughing is too much fun not too. But the reality is (and he knows this) that I am hardly ever lounging on the couch and am not sure I'd know a bonbon if someone shoved it in my mouth! I am taking this time "not working" to work at healing and growing in a variety of ways. I've connected with several patients and their families who are dealing with similar as well as different diagnoses to the one that I received. I am serving as a Consumer Reviewer on a panel made up of Doctors, Scientists, and Lay People (who have experienced cancer) to review, critique, and ultimately vote on funding for cancer related medical research proposals. I am attempting to blog regularly as it not only seems to interest my readers but it helps me to process. I am on twitter and facebook...probably too often...but learn of events and people that I want to connect with almost everyday. And did I mention keeping up with the life of a 3 year old in preschool (this includes bakesales, school pictures, lunches, etc...and she only goes 2 days a week)! Additionally, instead of the unknown bonbon I am spending a decent amount of time learning about nutrition and trying to put good and healthy things into my body. Oh yeah, and the holidays are arriving...Christmas shopping anyone!!
This not working thing is more work than I ever imagined and I love every minute! Now for those of you who are currently thinking "I hope she isn't overdoing it" not to worry...I still take the occasional nap and make time for yoga and reading that is totally unrelated to any of the above! In short, I am taking care of my body and mind to the very best of my ability.
I hope that you all are too!
My lovely and sweet husband often jokes about my time "not working" with the image of me laying on the couch eating bonbons all day! I will admit that I've embraced these jokes and even encourage them...laughing is too much fun not too. But the reality is (and he knows this) that I am hardly ever lounging on the couch and am not sure I'd know a bonbon if someone shoved it in my mouth! I am taking this time "not working" to work at healing and growing in a variety of ways. I've connected with several patients and their families who are dealing with similar as well as different diagnoses to the one that I received. I am serving as a Consumer Reviewer on a panel made up of Doctors, Scientists, and Lay People (who have experienced cancer) to review, critique, and ultimately vote on funding for cancer related medical research proposals. I am attempting to blog regularly as it not only seems to interest my readers but it helps me to process. I am on twitter and facebook...probably too often...but learn of events and people that I want to connect with almost everyday. And did I mention keeping up with the life of a 3 year old in preschool (this includes bakesales, school pictures, lunches, etc...and she only goes 2 days a week)! Additionally, instead of the unknown bonbon I am spending a decent amount of time learning about nutrition and trying to put good and healthy things into my body. Oh yeah, and the holidays are arriving...Christmas shopping anyone!!
This not working thing is more work than I ever imagined and I love every minute! Now for those of you who are currently thinking "I hope she isn't overdoing it" not to worry...I still take the occasional nap and make time for yoga and reading that is totally unrelated to any of the above! In short, I am taking care of my body and mind to the very best of my ability.
I hope that you all are too!
Sunday, November 7, 2010
Who I am...Post #3
I am not a Guinea Pig.
This post was part of the reason that I decided to write this series of Who I Am postings. However, I haven't been sure of where in the series this post should go. I have finally decided that I was simply procrastinating because I wasn't sure how I was going to write this one. So I've stopped procrastinating and decided that Post #3 is as good as any to talk about my NOT being a Guinea Pig. Many people have wondered and asked me about my transplant with the misconception that I underwent the standard bone marrow transplant involving very large needles inserted into bones of both myself and my sister. This is simply not the case. My transplant was and is research based and very different from what many people think of as a bone marrow transplant.
In April of this year I underwent a stem cell transplant at the National Institute of Health in Bethesda, Maryland. I was a part of a protocol (experimental research) titled: Allogeneic HSCT Without Preparative Chemotherapy or With Low-Intensity Preparative Chemotherapy Using Sirolimus and Sirolimus Generated Donor Th2 Cells for Therapy of Refractory Leukemia, Lymphoma, Myeloma, or Myelodysplastic Syndrome (There's a mouthful of really big words for you). I'll break the title down a bit for you:
I recently emailed the Transplant Coordinator for my Team at NIH to get some of the specific facts regarding the transplant and the protocol so that I could also share those in this blog.
In the email that I received with the facts about the transplant protocol I also read the following words and felt that instead of trying to paraphrase them I would simply quote them to you directly:
"I hope you know that we never view you (or any our patients) as anything but people in need of help (no guinea pigs here :). I think we hope that while we’re trying to move forward ideas that we think will help … that we do so in a way that we can share with others. It sounds a little corny, I know, but we do really care about everyone who comes to our door." In addition, the head of my team wanted to be sure that I understood "that he views the treatment as ‘an evolution in clinical practice’ – the new/novel features in his protocol are guided by experimental animal data and the clinical trial results."
So, all of that being said, by me and by members of my medical team I hope that it is clear that while I am one of not very many participants in a research protocol I am Not A Guinea Pig. I am a person who was battling a very serious disease and not only did this research protocol save my life but the things that they have learned from me will undoubtedly help patients in the future.
This post was part of the reason that I decided to write this series of Who I Am postings. However, I haven't been sure of where in the series this post should go. I have finally decided that I was simply procrastinating because I wasn't sure how I was going to write this one. So I've stopped procrastinating and decided that Post #3 is as good as any to talk about my NOT being a Guinea Pig. Many people have wondered and asked me about my transplant with the misconception that I underwent the standard bone marrow transplant involving very large needles inserted into bones of both myself and my sister. This is simply not the case. My transplant was and is research based and very different from what many people think of as a bone marrow transplant.
In April of this year I underwent a stem cell transplant at the National Institute of Health in Bethesda, Maryland. I was a part of a protocol (experimental research) titled: Allogeneic HSCT Without Preparative Chemotherapy or With Low-Intensity Preparative Chemotherapy Using Sirolimus and Sirolimus Generated Donor Th2 Cells for Therapy of Refractory Leukemia, Lymphoma, Myeloma, or Myelodysplastic Syndrome (There's a mouthful of really big words for you). I'll break the title down a bit for you:
- Allogenic means that I had a donor (my sister Amanda) as opposed to Autologous (I would have been my own donor)
- I did have the Low-Intensity Preparative Chemotherapy
- I was put on Sirolimus (an immune-suppressing medication) that I still take today
- On day +14 of my transplant I received "enhanced" Th2 Cells (also from my donor)
- My cancer was Refractory Lymphoma (did not respond to chemotherapy)
I recently emailed the Transplant Coordinator for my Team at NIH to get some of the specific facts regarding the transplant and the protocol so that I could also share those in this blog.
- The protocol that I am a part of has been in use since 2004 but has undergone 4 arms/versions in that time. The protocol gets changed as new things are learned.
- There have been a little over 100 patients in the 6 years since the start of the first arm.
- The 4th arm, the one that I am a part of, has had at this point 20 participants, I came in at the middle and was number 10.
In the email that I received with the facts about the transplant protocol I also read the following words and felt that instead of trying to paraphrase them I would simply quote them to you directly:
"I hope you know that we never view you (or any our patients) as anything but people in need of help (no guinea pigs here :). I think we hope that while we’re trying to move forward ideas that we think will help … that we do so in a way that we can share with others. It sounds a little corny, I know, but we do really care about everyone who comes to our door." In addition, the head of my team wanted to be sure that I understood "that he views the treatment as ‘an evolution in clinical practice’ – the new/novel features in his protocol are guided by experimental animal data and the clinical trial results."
So, all of that being said, by me and by members of my medical team I hope that it is clear that while I am one of not very many participants in a research protocol I am Not A Guinea Pig. I am a person who was battling a very serious disease and not only did this research protocol save my life but the things that they have learned from me will undoubtedly help patients in the future.
Thursday, November 4, 2010
Who I am...Post #2
I am a mom.
And if I do say so myself, a pretty darn good one. When I was pregnant with Grace I spent almost the entire nine months with my hand on my belly and a smile on my face. I wasn't one of those creepy mother to be's who swear they feel great all the time and what an amazing thing this is and oh look at me I am a vessel. No, I was simply happy (not always so happy with morning sickness) but happy nonetheless. We did not find out if we were having a boy or a girl until the doctor announced it in the delivery room upon Grace's arrival. We didn't need nor really want to know ahead of time...10 fingers and 10 toes seemed good enough for us (to be honest I would have been ok with 9 toes). We had selected a name for either option and although everyone, and I do mean everyone, assumed I would be having a boy, choosing the name Grace was the easiest decision we have ever made. Then on June 21st, 2007 we welcomed her (8 days late) into our world and she was and continues to be Grace, in every way imaginable. She is 3 now and just this morning while I was trying to get her from naked to clothed and she was trying to check out her underwear in the mirror she turned to me and said (with a straight face) "Mom, I'm doing something, just settle down!" 3 going on 25!
I give Grace a great deal of credit for who she is today and who she is becoming but I am also smart enough to know that Adam and I get to take a great deal of credit too. We make our mistakes but we do the best that we can. We love our little girl with every breath that we take and she knows it.
This Who I Am post is obviously about something other than my past year but I must quickly comment that Grace has weathered this year with a spirit and strength that would make any parent proud. She, without a doubt, got a raw deal at a very young age but dealt with it and smiles at me everyday. So today my Who I Am post is simple:
I am Grace's Mom...and I love every minute of it.
And if I do say so myself, a pretty darn good one. When I was pregnant with Grace I spent almost the entire nine months with my hand on my belly and a smile on my face. I wasn't one of those creepy mother to be's who swear they feel great all the time and what an amazing thing this is and oh look at me I am a vessel. No, I was simply happy (not always so happy with morning sickness) but happy nonetheless. We did not find out if we were having a boy or a girl until the doctor announced it in the delivery room upon Grace's arrival. We didn't need nor really want to know ahead of time...10 fingers and 10 toes seemed good enough for us (to be honest I would have been ok with 9 toes). We had selected a name for either option and although everyone, and I do mean everyone, assumed I would be having a boy, choosing the name Grace was the easiest decision we have ever made. Then on June 21st, 2007 we welcomed her (8 days late) into our world and she was and continues to be Grace, in every way imaginable. She is 3 now and just this morning while I was trying to get her from naked to clothed and she was trying to check out her underwear in the mirror she turned to me and said (with a straight face) "Mom, I'm doing something, just settle down!" 3 going on 25!
I give Grace a great deal of credit for who she is today and who she is becoming but I am also smart enough to know that Adam and I get to take a great deal of credit too. We make our mistakes but we do the best that we can. We love our little girl with every breath that we take and she knows it.
This Who I Am post is obviously about something other than my past year but I must quickly comment that Grace has weathered this year with a spirit and strength that would make any parent proud. She, without a doubt, got a raw deal at a very young age but dealt with it and smiles at me everyday. So today my Who I Am post is simple:
I am Grace's Mom...and I love every minute of it.
Tuesday, November 2, 2010
Who I am....A Series.
Who I am.
I write this posting today with the intention of it being the first of a series of posts about me and what makes up the fabric of me. I hope that you will enjoy reading these as I always enjoy writing them.
Last night I attended a workshop at the University of Massachusetts - Boston (given by the program that I received my Master's degree from). The workshop was titled "Storytelling and the Personal Journey" and the speaker was a good friend of mine, and fellow alum of Critical and Creative Thinking graduate program, Jane LaChance. Jane is an accomplished story teller and had much to share with us. I must admit at this point that walking into the room last night was a little bit scary. It has been a rare occasion in the last year that I have been in a room of people where the majority of the people knew nothing about me (specifically nothing about my cancer). This was something I appreciated last night and wasn't exactly sure how to deal with...it felt a bit like the white elephant in the room was sitting at my feet but no one else could see him.
At the start of the workshop we were asked to introduce ourselves to the group using five specific pieces of information: Our name, our place of birth, our place in birth order, a family value instilled in us growing up, and an early memory of story. For a few moments I was stumped. Not by the actual information that was needed, that I could do no problem, but stumped by the fact that all of this information was from a time in my pre-cancer life. I was about to introduce myself to a group of people who for the most part knew nothing about my last year and when I was done with that introduction they would still know nothing about this past year. This is when I really started thinking about writing this series of posts and delving into "Who I am".
I'll start here with the information that I gave the group last night, "My name is Elizabeth, I was born in Lewiston, Maine, I am the oldest, a family value that was important was education and reading, and my earliest story memories are from listening to Good Night Moon over and over and over again." It felt great to say all of those things last night and it feels great to write them today, they are all still true. My name has varied a but through time and nicknames but the rest of it remains true...even Good Night Moon is still my favorite story. I have, at this point in my life, probably read thousands of books but Good Night Moon is memorized and a bit like an old friend. We have several copies in the house including my childhood copy. I am a reader and a lover of books. That is a part of who I am.
What else is it that makes up me...beyond that white elephant sitting at my feet. I love the outdoors but have never really liked camping, although I tried. Peeing in the woods and worrying that creatures would eat our food always bothered me a bit. I loved going to summer camp as a child and working there as I grew older. I share a birthday with Audrey Hepburn and love to watch her movies and am blessed to be married to a man that also loves Audrey Hepburn. I love chocolate chips and peanut butter. I ate peanut butter and jelly sandwiches almost everyday for lunch until I went to college and discovered that when I made them they didn't taste quite the same as when my Dad made them. I don't like to watch scary movies, never have, in fact, I can't even watch the commercials for scary movies. I love Law and Order reruns, but the really old ones with Lenny Brisco. I am a little bit afraid of the dark but am proud to say that I eventually did outgrow the need to sleep with my back to the window and my face towards the door. I love hot tea, and hot apple cider. I love the ocean, I would even go so far as to say I need the ocean. I love to learn new things and about new people. I suppose this list could go on for quite a while...I'll stop it for now so that I am left with more material in the future.
As I said at the start of this post, I intend to write a series of posts on this topic. Please feel free to comment as you read them I enjoy the feedback.
I write this posting today with the intention of it being the first of a series of posts about me and what makes up the fabric of me. I hope that you will enjoy reading these as I always enjoy writing them.
Last night I attended a workshop at the University of Massachusetts - Boston (given by the program that I received my Master's degree from). The workshop was titled "Storytelling and the Personal Journey" and the speaker was a good friend of mine, and fellow alum of Critical and Creative Thinking graduate program, Jane LaChance. Jane is an accomplished story teller and had much to share with us. I must admit at this point that walking into the room last night was a little bit scary. It has been a rare occasion in the last year that I have been in a room of people where the majority of the people knew nothing about me (specifically nothing about my cancer). This was something I appreciated last night and wasn't exactly sure how to deal with...it felt a bit like the white elephant in the room was sitting at my feet but no one else could see him.
At the start of the workshop we were asked to introduce ourselves to the group using five specific pieces of information: Our name, our place of birth, our place in birth order, a family value instilled in us growing up, and an early memory of story. For a few moments I was stumped. Not by the actual information that was needed, that I could do no problem, but stumped by the fact that all of this information was from a time in my pre-cancer life. I was about to introduce myself to a group of people who for the most part knew nothing about my last year and when I was done with that introduction they would still know nothing about this past year. This is when I really started thinking about writing this series of posts and delving into "Who I am".
I'll start here with the information that I gave the group last night, "My name is Elizabeth, I was born in Lewiston, Maine, I am the oldest, a family value that was important was education and reading, and my earliest story memories are from listening to Good Night Moon over and over and over again." It felt great to say all of those things last night and it feels great to write them today, they are all still true. My name has varied a but through time and nicknames but the rest of it remains true...even Good Night Moon is still my favorite story. I have, at this point in my life, probably read thousands of books but Good Night Moon is memorized and a bit like an old friend. We have several copies in the house including my childhood copy. I am a reader and a lover of books. That is a part of who I am.
What else is it that makes up me...beyond that white elephant sitting at my feet. I love the outdoors but have never really liked camping, although I tried. Peeing in the woods and worrying that creatures would eat our food always bothered me a bit. I loved going to summer camp as a child and working there as I grew older. I share a birthday with Audrey Hepburn and love to watch her movies and am blessed to be married to a man that also loves Audrey Hepburn. I love chocolate chips and peanut butter. I ate peanut butter and jelly sandwiches almost everyday for lunch until I went to college and discovered that when I made them they didn't taste quite the same as when my Dad made them. I don't like to watch scary movies, never have, in fact, I can't even watch the commercials for scary movies. I love Law and Order reruns, but the really old ones with Lenny Brisco. I am a little bit afraid of the dark but am proud to say that I eventually did outgrow the need to sleep with my back to the window and my face towards the door. I love hot tea, and hot apple cider. I love the ocean, I would even go so far as to say I need the ocean. I love to learn new things and about new people. I suppose this list could go on for quite a while...I'll stop it for now so that I am left with more material in the future.
As I said at the start of this post, I intend to write a series of posts on this topic. Please feel free to comment as you read them I enjoy the feedback.
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