His name was Michael and we happened to be receiving infusions in side by side chairs in the day hospital at NIH. It was my day +100 post transplant and when the infusion of anti-fungal medication was finished I was headed for my PET Scan. Adam and I were both a bit anxious to say the least. I didn’t actually learn Michael’s name until after he had left and I asked his nurse. While he and I were talking names just didn’t seem important. The commonality of our experiencing, the nightmare of cancer was enough. We talked a bit about NIH, the weather, his recent scans that had turned up positive results, and my upcoming PET Scan. Michael’s infusion was complete before mine, but before he left the room he did something that I will never forget. He walked over to my chair and asked simply “Do you wear a Livestrong bracelet?” I said no, that I wore a Team Elizabeth bracelet and had just never picked up a Livestrong one. Michael proceeded to take off his own yellow bracelet, revealing an incredible tan line (clearly this bracelet had been there for a while). He handed me the bracelet and said “This has helped through some really tough times. I think you could use it today. You’re scan will be fine.” I barely got out the words Thank you as he smiled, waved and left the room. Thank you Michael for making a difference in my life that day and each day that I continue to live, getting healthier and healthier. You were right, my PET Scan was better than fine.
Monday, December 20, 2010
Saturday, December 18, 2010
Stem Cell Donors
A little over eight months ago I was the recipient of a stem cell transplant. I was lucky. My sister, Amanda, was a full match and as it turns out has an amazing immune system. The doctor's have been amazed by my progress each step of the way and I can say with certainty that the transplant saved my life. Many patients needing a stem cell transplant do not have sibling or familial matches and must rely on the national bone marrow registry to, hopefully, find a strong enough match. Sometimes this happens and sometimes it doesn't. I have even heard stories of matched donors backing out at the last minute. In my case there was no way my donor would back out...I am her older sister after all and would have kicked her butt!
Tonight on CBS Evening News I saw the story of Matt Hoffman (a stem cell match and donor) and Warren Sallach (the stem cell recipient).
http://www.cbsnews.com/stories/2010/12/17/eveningnews/main7160923.shtml?tag=cbsnewsTwoColUpperPromoArea
This is an inspiring story of a football team doing the right thing, a young man being asked to give, and the life of a father being saved. Please read the story.
This holiday season you too could sign up to possibly save a life. The procedure is practically painless and nothing like the way it used to be done (no more big needles into your bones). Take the few minutes to take a look at http://www.marrow.org/ and strongly think about becoming a donor. You could give the gift of life to another human being...is there a better gift than that?
Thank you Amanda, for your gift. Merry Christmas to all!
Tonight on CBS Evening News I saw the story of Matt Hoffman (a stem cell match and donor) and Warren Sallach (the stem cell recipient).
http://www.cbsnews.com/stories/2010/12/17/eveningnews/main7160923.shtml?tag=cbsnewsTwoColUpperPromoArea
This is an inspiring story of a football team doing the right thing, a young man being asked to give, and the life of a father being saved. Please read the story.
This holiday season you too could sign up to possibly save a life. The procedure is practically painless and nothing like the way it used to be done (no more big needles into your bones). Take the few minutes to take a look at http://www.marrow.org/ and strongly think about becoming a donor. You could give the gift of life to another human being...is there a better gift than that?
Thank you Amanda, for your gift. Merry Christmas to all!
Wednesday, December 8, 2010
Opportunity to make change.
This morning I got up very early to fly to Washington DC and day one of three days of panel discussions as a consumer reviewer for cancer related research proposals. This is an amazing opportunity that I was nominated for by The Lymphoma Research Foundation and I thank them for that. I am here with other consumer reviewers (cancer patients, survivors, and caregivers) as well as scientific reviewers (doctors and scientists). We have all come together to review, discuss, and vote on grant proposals that are geared to learning more about cancers and finding ways to cure them or make facing them at least a little bit easier.
Tonight at dinner I was one of three consumer reviewers to lead the whole roomful of people in a moment of silence. Each of us was selected from each of the three types of panels that are represented here. We were asked to speak briefly about our story and why we are here. The goal being to remind all those in the room the importance of what we have gathered here together to do. For a few moments we were each able to put a face to the reason we are voting on these proposals. I have included the short speech that I gave below. For those of you whose names I have included or whose family members were included I hope that was ok. It meant a lot to me to be able to honor each of the people that I names.
Tonight at dinner I was one of three consumer reviewers to lead the whole roomful of people in a moment of silence. Each of us was selected from each of the three types of panels that are represented here. We were asked to speak briefly about our story and why we are here. The goal being to remind all those in the room the importance of what we have gathered here together to do. For a few moments we were each able to put a face to the reason we are voting on these proposals. I have included the short speech that I gave below. For those of you whose names I have included or whose family members were included I hope that was ok. It meant a lot to me to be able to honor each of the people that I names.
Moment of Silence
Wednesday, December 08, 2010
Lindsay Berghuis, Leukemia. Chris Henderson, Squamous Cell Carcinoma. Melissa Etheridge, Breast Cancer. Joe Mitchell, Prostate Cancer. Michael Douglas, Throat Cancer. Patrick Swayze, Pancreatic Cancer. Francis Dow Hamblin, Lung Cancer. Joshua Ragsdale, Leukemia. Grant Gratton, Non-Hodgkins Lymphoma. Elizabeth Edwards, Breast Cancer. Some of these names are familiar to you and some of them are not, but each of these people and their families were challenged with a cancer diagnosis. Some are still with us, and others are not.
My name is Elizabeth Hamblin Naylor and cancer gave me two birthdays. I was diagnosed on October 16th, 2009 with Primary Mediastinal Diffuse Large B-Cell Lymphoma. At the time my daughter Grace was two years old, and my husband Adam and I had been married for 6 years. We were planning on putting our home on the market and I was hoping to buy a new car. Plans changed. I had a softball sized tumor in the right center of my chest. At this time the tumor was pushing through my chest wall and although it wasn’t totally visible to others, I knew it was there and can’t say I loved the everyday reminder.
I tried three different types of chemotherapy without any success in fighting my disease. The first chemo was R-CHOP and we were assured that given my age and health it would be successful. It only took two rounds to know it was not working. The second chemo was RICE and again only two rounds in and I was getting worse. In addition to the tumor in my chest I had also developed a tumor that essentially encased my right kidney. My third type of chemo took us from our home outside of Boston to The National Institute of Health, in Bethesda, Maryland. I signed on to a research protocol and although the team was optimistic at the start, after two rounds there was no change in my tumor.
It was time to decide where to have an allogenic stem cell transplant. In April of this year, after being told by the transplant doctors in Boston that while they could do the standard transplant, they were not confidant that I would even survive the process, I signed on to another research protocol at NIH. These doctors were confidant and felt that their transplant could and would save my life. My family and I found ourselves moving to Bethesda for the next four months. Being so far from home was difficult but I am grateful to have made that decision.
Today, 8 months post transplant, I stand before you in partial remission with no sign of cancer activity in my body. I am a survivor. And as a survivor I have the chance to continue being a mother, a wife, a daughter, a sister, a friend. I have the opportunity to make a difference in the world by participating in programs such as this one. Cancer research and funding for this research is, for obvious reasons, something that I believe in with all of my heart and with my life. The research protocol that I am a part of has been around for six years and is now in its fourth version. I am the 90th person to be a part of this protocol and the 10th person to be a part of this particular version. Each time I am scanned and the scan shows no cancer activity my team of doctors and nurses are both excited for me and excited for their research. Not only did this research save my life but my participation will help countless other patients in the future.
My name is Elizabeth Hamblin Naylor and on May 4th, 2011 I will be 32 years old and on April 6th, 2011 my immune system and healthy body will be1 year old. Cancer gave me two birthdays.
Please join me now in a moment of silence to remember those who have been diagnosed with cancer, their caregivers, their friends, and their families.
Tuesday, December 7, 2010
A sad day.
Today is many things to many people. It is the 7th of December, 2010. It is the anniversary of the attack on Pearl Harbor. It is the day that Elizabeth Edwards past away after a long battle with breast cancer. When I heard this news it was like being punched in the gut...more than once. I have never met Elizabeth Edwards and now will never have the chance but I can say that her story helped me more than once during my own struggles with non-hodgkins lymphoma. She is an inspiration. She taught me about grace, strength, emotion, family, and playing the hand that you are dealt no matter how difficult. Over the last several years I have read many articles and watched many news stories about Elizabeth and the Edwards' family, even before my own cancer diagnosis she was a woman that I wanted to know about. I wanted to sit and have lunch or tea and ask her questions and learn about her as a person. Unfortunately, she and I (as well as so many others) are part of a club that none of us wanted to be a part of. We have experienced being diagnosed with cancer, we have fought the hard battles in an effort to save our own lives, we have advocated for others and their lives, we have seen others lose their battle, we have cried, we have laughed, we have made inappropriate cancer jokes, above all else our lives have been forever changed.
Elizabeth Edwards, you will be missed. By me and countless others who have met you and who have not. My heart goes out to you and to your family. You will not be forgotten.
Elizabeth Edwards, you will be missed. By me and countless others who have met you and who have not. My heart goes out to you and to your family. You will not be forgotten.
Monday, December 6, 2010
'Tis the Season
This morning began like most mornings in our house these days...Grace did not sleep all that late and in fact awoke before me (this actually never happens). I snuggled her into our bed and headed to take a shower. Moments into my shower (right about when I started thinking how nice it is to shower without having a conversation with a small child), I heard the bathroom door open and there was Grace peering around the shower curtain. "Mommy, is it ok if I go in my bedroom and get the bible so I can read Daddy the stories about Baby Jesus?" "Of course sweetie, Daddy will love that." My daughter is 3.5, has dealt with the last year with poise and strength and now at Christmas time wants to read about Baby Jesus with her Daddy. Does it get any better than that?!
This time of year, as many of us well know, is filled with Santa Claus, shopping, wrapping, and gifts. It can be hectic and stressful and many people forget to slow down and really enjoy the season. This year we are still buying and wrapping gifts and with that brings dealing with the crazies at the various stores but I have learned something post cancer and that is truly what the real gifts are. It was a gift to me this morning to hear my daughter ask such a genuine and heartfelt request. Each day is a gift (I know...cliche...but true), no matter what your health or life is throwing at you.
'Tis the season to remember what is important and to reflect on why it is important. Take a moment and look at what you are buying for others and think about how that gift is a reflection of your love and caring...perhaps the gift of time or some well spoken words would be gift enough.
This time of year, as many of us well know, is filled with Santa Claus, shopping, wrapping, and gifts. It can be hectic and stressful and many people forget to slow down and really enjoy the season. This year we are still buying and wrapping gifts and with that brings dealing with the crazies at the various stores but I have learned something post cancer and that is truly what the real gifts are. It was a gift to me this morning to hear my daughter ask such a genuine and heartfelt request. Each day is a gift (I know...cliche...but true), no matter what your health or life is throwing at you.
'Tis the season to remember what is important and to reflect on why it is important. Take a moment and look at what you are buying for others and think about how that gift is a reflection of your love and caring...perhaps the gift of time or some well spoken words would be gift enough.
Thursday, December 2, 2010
Jimmy V. Week
When you have a chance check out the following website: http://www.jimmyv.org/index.php
This week (Dec.1 - Dec.7) is Jimmy V. Week. This organization is well worth the time it takes to click on the above link and do a little reading. Here is a quoted passage from the site, about Jimmy Valvano:
"During one of Jim's final interviews he stated, "I want to help every cancer patient I can now. I don't know if I can handle that, but it's the only conceivable good that can come out of this." Jim proved that he could more than handle his final role as cancer advocate. He spent the final ten months of his life giving the world personal insights into the life of a cancer patient in the hope that he could bring some attention to the disease that affects millions. He was not afraid to let others witness his weakening body or the tears that he shed when he spoke of his certain death during interviews and public appearances. He knew that his body would lose the battle against cancer, but his vibrant spirit was the gift that he would leave behind."
This week (Dec.1 - Dec.7) is Jimmy V. Week. This organization is well worth the time it takes to click on the above link and do a little reading. Here is a quoted passage from the site, about Jimmy Valvano:
"During one of Jim's final interviews he stated, "I want to help every cancer patient I can now. I don't know if I can handle that, but it's the only conceivable good that can come out of this." Jim proved that he could more than handle his final role as cancer advocate. He spent the final ten months of his life giving the world personal insights into the life of a cancer patient in the hope that he could bring some attention to the disease that affects millions. He was not afraid to let others witness his weakening body or the tears that he shed when he spoke of his certain death during interviews and public appearances. He knew that his body would lose the battle against cancer, but his vibrant spirit was the gift that he would leave behind."
Thursday, November 25, 2010
Happy Thanksgiving!
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.
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 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.
Monday, October 25, 2010
Thank you!
Thank you to all who ran, walked, donated, sponsored, volunteered, organized, wrote about, photographed, and cheered for the 1st Annual Team Elizabeth Run/Walk! It was a huge success! The weather held for us and most agreed that "it wasn't that cold!" We are still tallying up all the numbers but I can tell you with a reasonable amount of certainty that almost 150 people either ran or walked and that we raised in the thousands of dollars! All going to The Leukemia and Lymphoma Society! Once everything has been officially counted I'll update and let you know! I'm already looking forward to next year!
Thursday, October 21, 2010
Community
As we finalize all of the details and planning for this weekend's Team Elizabeth Run/Walk I've found myself doing an awful lot of reflecting on community. This past year has felt like decades to me and at the same time it doesn't always seem that long ago that I was living a life without fear or even much knowledge of cancer. What a difference a year can make?! Throughout this year I have learned so many things, too many to list, in fact. But one of those things is about community. I have realized over the year that I am a part of many amazing communities that have all come together in one way or another to support me and my family as we have ridden this ridiculous and frightening cancer roller coaster. These communities individually and as a whole have helped me take each day one at a time and put one foot in front of the other when at times it was all I could do to stand.
This Sunday, we will be bringing together people from many of these different communities to walk, to run, to volunteer, to make a difference. The outpouring of support for this first time event has been remarkable. In our quest to obtain local sponsors in the town of Hull I have had the opportunity to meet some very caring, giving, and thoughtful people. I have lived in this town for over 7 years and can't believe that it has taken me this long to meet and know these people. We have received monetary donations, food donations, space donations. Local businesses have posted our bright green signs in their windows and on their doors, many have signed up to walk or run and have encouraged their customers, clients, friends, and family to do so as well! Thank you.
Which brings me to my main point about community. Community is necessary and important but also thoughtful and kind. If each person in this world understood that they are a welcome part of many communities, the world would be a very different place to live. I think there would be more smiles, more purposeful acts of kindness, and a genuine gift of love from one to another. Take a look around at your community and see how you fit into it and how you could be a welcoming member of that community. You just might make someone's day!
This Sunday, we will be bringing together people from many of these different communities to walk, to run, to volunteer, to make a difference. The outpouring of support for this first time event has been remarkable. In our quest to obtain local sponsors in the town of Hull I have had the opportunity to meet some very caring, giving, and thoughtful people. I have lived in this town for over 7 years and can't believe that it has taken me this long to meet and know these people. We have received monetary donations, food donations, space donations. Local businesses have posted our bright green signs in their windows and on their doors, many have signed up to walk or run and have encouraged their customers, clients, friends, and family to do so as well! Thank you.
Which brings me to my main point about community. Community is necessary and important but also thoughtful and kind. If each person in this world understood that they are a welcome part of many communities, the world would be a very different place to live. I think there would be more smiles, more purposeful acts of kindness, and a genuine gift of love from one to another. Take a look around at your community and see how you fit into it and how you could be a welcoming member of that community. You just might make someone's day!
Saturday, October 16, 2010
Today...another Anniversary...Part 2
So, I posted early this morning about today being the anniversary of diagnosis. Not really an anniversary to celebrate. One to acknowledge but to celebrate...not so much. Instead, Adam and I want to share with all that we spent today making a new anniversary. Grace spent the day playing with Aunt Susu and Jon so that we could renew our vows. Just the two of us and our minister. It was amazing and wonderful and a very special way to change the meaning of a day. Before I get too mushy and cry I just want to say remember to hug the folks who mean the most or give a call to someone who would love to hear your voice.
Today...another Anniversary...Part 1
Today is the one year anniversary of my official diagnosis of Primary Mediastinal Diffuse Large B-Cell Lymphoma (There's a mouthful for you). Last year it was a Friday and although we already knew what was coming to hear the words from the oncologist was a bit like being run over by a truck. I remember sitting very quietly and nodding a lot as he went through what all those big words meant, what chemo would look like, what the potential side effects were, when chemo would start, and that he felt very good about this chemo and its success rates (especially in people like me - otherwise healthy, young, etc). It was all incredibly difficult to wrap my mind around, surreal in fact. The most concrete thing in the room, and I'll never forget this either, was my husband Adam's hand and fingers interlaced with mine. We were in this together, whatever it may bring. I'm pretty sure I cried and cried that night in bed (as I did on several other occasions) and Adam was there holding me and repeating over and over again that we, that I could do this.
So, it has been one year and look at me now!
So, it has been one year and look at me now!
Sunday, October 10, 2010
Speech
Tonight I had the opportunity to speak at a pre-race dinner for a Team in Training Team of women who have prepared for and will run in the Tufts Health Plan 10K for Women tomorrow in Boston. I was asked to speak about my cancer story and about my involvement with The Leukemia and Lymphoma Society and Team in Training. After some thinking about it I decided that I should post the speech here for more to see. Enjoy.
Team in Training Tufts 10K Pasta Dinner Speech – Sunday, October 10, 2010
My name is Elizabeth Naylor and cancer gave me two birthdays. On May 4th 2011 I will turn 32 years old and on April 6th, 2011 my immune system and new healthier body will be +365 days old.
My diagnosis of Non-Hodgkins Lymphoma came one year ago. Last fall, I was 30 years old and as the doctors love to say "otherwise healthy". I was a mother to two year old Grace, a wife to Adam, a sister, a daughter, a friend, a middle school teacher. I loved to read, to play on the beach, to ride my bike. I watched Law and Order re-runs and occasionally the news. In short, I was a normal 30 year old living a pretty normal life.
On August 31st I visited my primary care physician because of a nagging cough and some chest pain, certain that some antibiotics would clear up my self-diagnosis of pleurisy. Good thing I’m not the doctor. I was simply hoping to start another school year without the coughing. One week later I was having a CT scan to find out what the “something” was that had appeared on an x-ray. Never in a million years did I expect a cancer diagnosis.
On October 16th I was diagnosed at Dana Farber with Primary Mediastinal Diffuse Large B-Cell Lymphoma, one of the many variations of Non-Hodgkins Lymphoma. I had a softball sized tumor just to the right of the center of my chest. At this time the tumor had begun to push through my chest wall and although it wasn’t all that visible to others I knew it was there and can’t say I loved the everyday reminder.
On October 20th I began my first type of chemotherapy. The doctor explained that this particular chemotherapy was effective in 95% of patients and given my general health and age it was assumed by all that I would undergo 6 rounds of this chemo, some radiation, and by April 2010 would be on vacation with my family to celebrate my health and recovery. However, after only two rounds it was clear that it wasn’t working and I moved from the 95% to the 5% category. One of the great many things that I have learned from cancer is never to assume, expect the unexpected and then deal with what comes. By this time my tumor had become significantly more obvious externally and was sort of a marker for us. Was chemo working? Is the bump getting smaller or is it bigger? Also at this time I began joking about my third boob, not that it was all that funny, but you do what you have to do. Things had gone from bad to very bad.
In November I started a second type of chemotherapy, this one requiring 4 day inpatient hospital stays. The plan was that I would do four rounds and then radiation and likely a stem cell transplant of my own stem cells. No such luck. Two rounds in I was clearly getting worse. It was a Friday that we learned this and were exploring next steps with Dana Farber. On the following Tuesday, with the blessing and great understanding of my oncologist in Boston, my husband Adam and I were in Bethesda, Maryland at the National Institute of Health learning about an experimental protocol that the Lymphoma team there believed would help me.
I began my third type of chemotherapy at the end of that week. This chemo required 72 hours of continuous treatment as well as several more hours of other drugs to make up the whole cocktail. We travelled to and from Bethesda three times for this chemotherapy and on the third trip discovered that not only was my tumor virtually the same size but now I also had a tumor completely incasing my right kidney. Things had gone from very bad to almost hopeless.
It was now March of this year and my Lymphoma team was strongly recommending an allogenic stem cell transplant as my best option. The National Institute of Health had an experimental transplant protocol that I fit into but we were also encouraged to talk it through with Dana Farber as well. The conversation with Dana Farber basically gave us the following information: we do the standard stem cell transplant here. We are willing to give it a try with your case but we don’t believe it will work and we aren’t sure that with the way your cancer has progressed you would even survive the transplant process. This information made it quite easy to decide to participate in the experimental protocol at the National Institute of Health. This was a major turning point for us. My family and I moved to Bethesda where we knew we would stay for at least 100 days.
April 6th was one of the scariest days of my life but it was also rather anti-climactic. My sister Amanda had been previously confirmed as a full match for me, something for which I will always be grateful. Many people needing a transplant never find a match or have to move forward with a partial or non-familial match.
I spent much of the day simply waiting. Amanda spent the morning donating loads of wonderful stem cells and then we waited while the cells were tested and counted and finally in the late afternoon a batch was brought to my room. The nurses had warned me that the whole thing really would seem like no big deal, but in my mind, it was a transplant, I was sure they were confused, it had to be a big deal! No, they were right.
The transplant itself went like this: a small bag, sort of like a sandwich bag filled with what looked like tomato soup was hooked to my IV. We waited about 15 minutes for gravity to complete its work and then I was done. Pretty anti-climactic!
Now we began to count days, waiting to get to day +100. I was out of the hospital on day +9 and although went in and out of inpatient a few times during the 100 days, by and large I continued to improve. It turns out my sister Amanda, has a ridiculously strong immune system that did not like my tumors one bit! Each scan I have had post transplant has brought smiles to the faces of all of my doctors and nurses, and of course to me and my family. At day +100 we were given the go ahead to move back to Boston with instructions for me to have twice a week blood draws and return to Bethesda every four weeks to check-in. I am now in what they call partial remission with no sign of cancer or tumor on my kidney and no sign of cancer activity in the mass in my chest. In fact, I just returned on Friday from my most recent trip to Bethesda and the news couldn’t have been better.
So, here I stand before you a cancer survivor. Many have said I am a miracle.
What is a Miracle? Each day different people use this word with different meanings and intentions. Often to me it feels as though the word miracle could be replaced with words like coincidence, marvel, rarity, or surprise. The word miracle also often conjures up an image of God or Gods intervening to cause an event or a healing to happen.
Is it a miracle that in January of this year we were hoping that I would live to see my daughter turn three in June, and then did? Is it a miracle that one team of transplant doctors said they would be willing to do my transplant but did not believe it would work, and another team of transplant doctors said we have a research based transplant that we think will help you, and it did? Is it a miracle that after almost a year of bad reports and really bad cancer that didn't respond to chemotherapy it looks like I'm going to live a long life anyway?
My quick answer to all of these questions is sort of.
Over the past year, I have been listed on dozens of prayer lists at all kinds of religious institutions, both in the United States and some internationally. There have been prayer vigils held in my name. There have been countless fundraisers, gifts, cards, meals, love, and support all from a network that prior to diagnosis I didn't realize was out there.
During a great deal of my treatment I prayed and meditated (there were some gaps...God and I weren't on the best of terms for awhile but I think we're better now). Without all of this support, without all of these prayers, would I be here today? There is no way to know. What I do know is that the support and prayers and all the rest of it helped to pull me through a great number of very difficult moments, days, and weeks. This is why I can say today that in a very significant way I am a miracle.
So, do I believe in miracles? Yes I do. But I also believe that a miracle cannot occur without a whole lot of hard work. I believe that there may have been divine intervention of some sort, but I know that all of the doctors, nurses, technologists, aides, and specialists that I have worked with had and continue to have a great deal of responsibility in taking care of my body and health.
And not to be forgotten or even put close to the bottom of the list I believe that what you all do with Team in Training is a Miracle. I am not a runner, have never been ,but luckily for me and for so many battling Leukemia or Lymphoma my younger sister Susannah is a runner and wanted to help.
My introduction to Team in Training came when my sister Susannah and her boyfriend Jon decided to train with Team in Training for last June’s San Diego Marathon. This was Susannah’s third marathon and Jon’s second. And as far as I know their grand introduction to truly amazing fundraising! They decided to form Team Elizabeth. They had green bracelets made to give to people who donated. They created a facebook page and they emailed everybody they knew. After two weeks of intensive work they had already raised $5000 dollars. In only a few months and in time for the marathon Susannah was the top fundraiser in the state of Massachusetts and Team Elizabeth had donated over $20,000 dollars for The Leukemia and Lymphoma Society. Quite an accomplishment! And I have yet to even mention all the miles they ran to prepare for the actual marathon which they completed successfully on June 6th.
I thank Team in Training for helping them both in this endeavor and truly from the bottom of my heart I thank the two of them for making the choice to run and to raise money for such a worthy cause in my name. Not only did Team in Training give my sister a concrete way to help me but the gift of the network of people it created who were thinking about me and my family is a gift that I can never repay to her or to Jon. There are many terrible days, weeks, months, and for some years that come with any cancer diagnosis. I have experienced many of those days and had to find ways to get through them. Thank you Susannah and Jon and everyone associated with Team in Training for helping me remember that I could get through those moments. All of your hard work each day brings hope to those battling these diseases, to those surviving these diseases, and to those caregivers who are helping their loved ones through the worst days. Hope is a great miracle that must be worked for, each and every minute.
Team in Training is a miracle. Team in Training has provided a venue for you all to come together in preparation for races like tomorrow’s 10K. Team in Training has made it possible for you to join others in running while raising money for such an important cause. Likely, Team in Training has also provided you with a network of friends that understand why you each show up to practices and events and why you are here tonight (assuming you came tonight for more than just some great pasta).
You all are a miracle. You run because you lost your mother or uncle. You run because your sister is battling or your cousin is in remission. You run because your best friend lost his brother. You run because you are a survivor and have learned the hard way that every day is a gift and that running makes you happy. You run because you want to help, you want to make a difference. You run because you care. And that my friends, is a miracle.
My name is Elizabeth Naylor and I now have two birthdays. Please keep running so that others may also celebrate more birthdays! I know I’m looking forward to two cakes and two parties from here on out!
Team in Training Tufts 10K Pasta Dinner Speech – Sunday, October 10, 2010
My name is Elizabeth Naylor and cancer gave me two birthdays. On May 4th 2011 I will turn 32 years old and on April 6th, 2011 my immune system and new healthier body will be +365 days old.
My diagnosis of Non-Hodgkins Lymphoma came one year ago. Last fall, I was 30 years old and as the doctors love to say "otherwise healthy". I was a mother to two year old Grace, a wife to Adam, a sister, a daughter, a friend, a middle school teacher. I loved to read, to play on the beach, to ride my bike. I watched Law and Order re-runs and occasionally the news. In short, I was a normal 30 year old living a pretty normal life.
On August 31st I visited my primary care physician because of a nagging cough and some chest pain, certain that some antibiotics would clear up my self-diagnosis of pleurisy. Good thing I’m not the doctor. I was simply hoping to start another school year without the coughing. One week later I was having a CT scan to find out what the “something” was that had appeared on an x-ray. Never in a million years did I expect a cancer diagnosis.
On October 16th I was diagnosed at Dana Farber with Primary Mediastinal Diffuse Large B-Cell Lymphoma, one of the many variations of Non-Hodgkins Lymphoma. I had a softball sized tumor just to the right of the center of my chest. At this time the tumor had begun to push through my chest wall and although it wasn’t all that visible to others I knew it was there and can’t say I loved the everyday reminder.
On October 20th I began my first type of chemotherapy. The doctor explained that this particular chemotherapy was effective in 95% of patients and given my general health and age it was assumed by all that I would undergo 6 rounds of this chemo, some radiation, and by April 2010 would be on vacation with my family to celebrate my health and recovery. However, after only two rounds it was clear that it wasn’t working and I moved from the 95% to the 5% category. One of the great many things that I have learned from cancer is never to assume, expect the unexpected and then deal with what comes. By this time my tumor had become significantly more obvious externally and was sort of a marker for us. Was chemo working? Is the bump getting smaller or is it bigger? Also at this time I began joking about my third boob, not that it was all that funny, but you do what you have to do. Things had gone from bad to very bad.
In November I started a second type of chemotherapy, this one requiring 4 day inpatient hospital stays. The plan was that I would do four rounds and then radiation and likely a stem cell transplant of my own stem cells. No such luck. Two rounds in I was clearly getting worse. It was a Friday that we learned this and were exploring next steps with Dana Farber. On the following Tuesday, with the blessing and great understanding of my oncologist in Boston, my husband Adam and I were in Bethesda, Maryland at the National Institute of Health learning about an experimental protocol that the Lymphoma team there believed would help me.
I began my third type of chemotherapy at the end of that week. This chemo required 72 hours of continuous treatment as well as several more hours of other drugs to make up the whole cocktail. We travelled to and from Bethesda three times for this chemotherapy and on the third trip discovered that not only was my tumor virtually the same size but now I also had a tumor completely incasing my right kidney. Things had gone from very bad to almost hopeless.
It was now March of this year and my Lymphoma team was strongly recommending an allogenic stem cell transplant as my best option. The National Institute of Health had an experimental transplant protocol that I fit into but we were also encouraged to talk it through with Dana Farber as well. The conversation with Dana Farber basically gave us the following information: we do the standard stem cell transplant here. We are willing to give it a try with your case but we don’t believe it will work and we aren’t sure that with the way your cancer has progressed you would even survive the transplant process. This information made it quite easy to decide to participate in the experimental protocol at the National Institute of Health. This was a major turning point for us. My family and I moved to Bethesda where we knew we would stay for at least 100 days.
April 6th was one of the scariest days of my life but it was also rather anti-climactic. My sister Amanda had been previously confirmed as a full match for me, something for which I will always be grateful. Many people needing a transplant never find a match or have to move forward with a partial or non-familial match.
I spent much of the day simply waiting. Amanda spent the morning donating loads of wonderful stem cells and then we waited while the cells were tested and counted and finally in the late afternoon a batch was brought to my room. The nurses had warned me that the whole thing really would seem like no big deal, but in my mind, it was a transplant, I was sure they were confused, it had to be a big deal! No, they were right.
The transplant itself went like this: a small bag, sort of like a sandwich bag filled with what looked like tomato soup was hooked to my IV. We waited about 15 minutes for gravity to complete its work and then I was done. Pretty anti-climactic!
Now we began to count days, waiting to get to day +100. I was out of the hospital on day +9 and although went in and out of inpatient a few times during the 100 days, by and large I continued to improve. It turns out my sister Amanda, has a ridiculously strong immune system that did not like my tumors one bit! Each scan I have had post transplant has brought smiles to the faces of all of my doctors and nurses, and of course to me and my family. At day +100 we were given the go ahead to move back to Boston with instructions for me to have twice a week blood draws and return to Bethesda every four weeks to check-in. I am now in what they call partial remission with no sign of cancer or tumor on my kidney and no sign of cancer activity in the mass in my chest. In fact, I just returned on Friday from my most recent trip to Bethesda and the news couldn’t have been better.
So, here I stand before you a cancer survivor. Many have said I am a miracle.
What is a Miracle? Each day different people use this word with different meanings and intentions. Often to me it feels as though the word miracle could be replaced with words like coincidence, marvel, rarity, or surprise. The word miracle also often conjures up an image of God or Gods intervening to cause an event or a healing to happen.
Is it a miracle that in January of this year we were hoping that I would live to see my daughter turn three in June, and then did? Is it a miracle that one team of transplant doctors said they would be willing to do my transplant but did not believe it would work, and another team of transplant doctors said we have a research based transplant that we think will help you, and it did? Is it a miracle that after almost a year of bad reports and really bad cancer that didn't respond to chemotherapy it looks like I'm going to live a long life anyway?
My quick answer to all of these questions is sort of.
Over the past year, I have been listed on dozens of prayer lists at all kinds of religious institutions, both in the United States and some internationally. There have been prayer vigils held in my name. There have been countless fundraisers, gifts, cards, meals, love, and support all from a network that prior to diagnosis I didn't realize was out there.
During a great deal of my treatment I prayed and meditated (there were some gaps...God and I weren't on the best of terms for awhile but I think we're better now). Without all of this support, without all of these prayers, would I be here today? There is no way to know. What I do know is that the support and prayers and all the rest of it helped to pull me through a great number of very difficult moments, days, and weeks. This is why I can say today that in a very significant way I am a miracle.
So, do I believe in miracles? Yes I do. But I also believe that a miracle cannot occur without a whole lot of hard work. I believe that there may have been divine intervention of some sort, but I know that all of the doctors, nurses, technologists, aides, and specialists that I have worked with had and continue to have a great deal of responsibility in taking care of my body and health.
And not to be forgotten or even put close to the bottom of the list I believe that what you all do with Team in Training is a Miracle. I am not a runner, have never been ,but luckily for me and for so many battling Leukemia or Lymphoma my younger sister Susannah is a runner and wanted to help.
My introduction to Team in Training came when my sister Susannah and her boyfriend Jon decided to train with Team in Training for last June’s San Diego Marathon. This was Susannah’s third marathon and Jon’s second. And as far as I know their grand introduction to truly amazing fundraising! They decided to form Team Elizabeth. They had green bracelets made to give to people who donated. They created a facebook page and they emailed everybody they knew. After two weeks of intensive work they had already raised $5000 dollars. In only a few months and in time for the marathon Susannah was the top fundraiser in the state of Massachusetts and Team Elizabeth had donated over $20,000 dollars for The Leukemia and Lymphoma Society. Quite an accomplishment! And I have yet to even mention all the miles they ran to prepare for the actual marathon which they completed successfully on June 6th.
I thank Team in Training for helping them both in this endeavor and truly from the bottom of my heart I thank the two of them for making the choice to run and to raise money for such a worthy cause in my name. Not only did Team in Training give my sister a concrete way to help me but the gift of the network of people it created who were thinking about me and my family is a gift that I can never repay to her or to Jon. There are many terrible days, weeks, months, and for some years that come with any cancer diagnosis. I have experienced many of those days and had to find ways to get through them. Thank you Susannah and Jon and everyone associated with Team in Training for helping me remember that I could get through those moments. All of your hard work each day brings hope to those battling these diseases, to those surviving these diseases, and to those caregivers who are helping their loved ones through the worst days. Hope is a great miracle that must be worked for, each and every minute.
Team in Training is a miracle. Team in Training has provided a venue for you all to come together in preparation for races like tomorrow’s 10K. Team in Training has made it possible for you to join others in running while raising money for such an important cause. Likely, Team in Training has also provided you with a network of friends that understand why you each show up to practices and events and why you are here tonight (assuming you came tonight for more than just some great pasta).
You all are a miracle. You run because you lost your mother or uncle. You run because your sister is battling or your cousin is in remission. You run because your best friend lost his brother. You run because you are a survivor and have learned the hard way that every day is a gift and that running makes you happy. You run because you want to help, you want to make a difference. You run because you care. And that my friends, is a miracle.
My name is Elizabeth Naylor and I now have two birthdays. Please keep running so that others may also celebrate more birthdays! I know I’m looking forward to two cakes and two parties from here on out!
Saturday, October 9, 2010
6 Months Post Transplant!
Home from another check-in with my team of Doctor's at NIH. They continue to be thrilled with my progress! My blood work is "normal" and seems to show up that way at each of my weekly blood draws here at home, I'm gaining weight (slowly but surely), I feel great, my GVHD seems to be being managed well, and last but, very important, my PET scan showed only that the mass in my chest is continuing to get smaller and there is no sign of cancer activity in it! There were a lot of smiles as the doctor's told me we call this partial remission! I think that Adam said it best when he said yesterday "so basically you're a normal human who gets to take a whole lot of pills and have scans regularly!" You all can decide how normal I may be but yes basically I get to continue living my life in the best way I know how each and everyday!
Thursday, October 7, 2010
San Diego Marathon Part 2 - Just a bit shorter!
San Diego Marathon Part 2! (Just a little bit shorter and maybe a few less participants)
As many, if not most, of you are aware on June 6th of this year my sister Susannah and her boyfriend Jon ran and completed the San Diego Marathon! This was after spending many months of time and effort to raise over $20,000 dollars to help support The Leukemia and Lymphoma Society. Many of you gave donations to this cause and own or wear a lime green Team Elizabeth bracelet designed by Jon and Susannah to help raise awareness of the cause. They were able to use the power of the internet to raise over $5,000 dollars in the first 2 weeks of trying. This was followed by countless letters, thank you notes, phone calls, and fundraising ideas that eventually brought them to the grand total of $20,000! Susannah was the top fundraiser in the state of Massachusetts and even has a plaque to prove it! The money is an amazing amount but not nearly the most important part of what they did...the most important part is that they brought a community of people together to rally around their cause, my fight, and of course the grand color Lime Green! This community brought strength to me each and everyday. The idea that my sister had sent out all of these lime green bracelets and you were all wearing them and posting pictures of them on facebook brought smiles I didn't always know I had in me. Oh and in case I need to remind you all of this fundraising and community building was going on while they were also training through the winter in Boston to run 26.2 miles! Truly amazing! I write this tonight to say Thank you to Susannah and Jon for all that they did to help in every way that they could think of, and to thank all of you who wore or still wear a Team Elizabeth bracelet!
Now, you have the chance to participate in the Marathon Part 2 and I once again encourage all who can, to participate in the 1st Annual Team Elizabeth 4 Mile Run/2 Mile Walk on October 24th, 2010 at 8am. Once again Susannah and Jon came up with an idea to support The Leukemia and Lymphoma Society and continue to build community. This event will be special in so many ways, they have made it so.
If you have not already registered or can't be there but would like to donate please visit: www.racemenu.com/teamelizabeth
If you register before this weekend is over we can be certain that you will get a T-Shirt...if you wait the t-shirt guarantee goes down a bit! However, if you do wait keep in mind that you will be able to register at the event. Now, if you're still hesitating (even with the t-shirt promise), know that there will be hot Chowder, bananas, water, and coffee at the end of the run and walk, as well as an after race party at Daddy's Beach Club in Hull with Pizza and Music!
As many, if not most, of you are aware on June 6th of this year my sister Susannah and her boyfriend Jon ran and completed the San Diego Marathon! This was after spending many months of time and effort to raise over $20,000 dollars to help support The Leukemia and Lymphoma Society. Many of you gave donations to this cause and own or wear a lime green Team Elizabeth bracelet designed by Jon and Susannah to help raise awareness of the cause. They were able to use the power of the internet to raise over $5,000 dollars in the first 2 weeks of trying. This was followed by countless letters, thank you notes, phone calls, and fundraising ideas that eventually brought them to the grand total of $20,000! Susannah was the top fundraiser in the state of Massachusetts and even has a plaque to prove it! The money is an amazing amount but not nearly the most important part of what they did...the most important part is that they brought a community of people together to rally around their cause, my fight, and of course the grand color Lime Green! This community brought strength to me each and everyday. The idea that my sister had sent out all of these lime green bracelets and you were all wearing them and posting pictures of them on facebook brought smiles I didn't always know I had in me. Oh and in case I need to remind you all of this fundraising and community building was going on while they were also training through the winter in Boston to run 26.2 miles! Truly amazing! I write this tonight to say Thank you to Susannah and Jon for all that they did to help in every way that they could think of, and to thank all of you who wore or still wear a Team Elizabeth bracelet!
Now, you have the chance to participate in the Marathon Part 2 and I once again encourage all who can, to participate in the 1st Annual Team Elizabeth 4 Mile Run/2 Mile Walk on October 24th, 2010 at 8am. Once again Susannah and Jon came up with an idea to support The Leukemia and Lymphoma Society and continue to build community. This event will be special in so many ways, they have made it so.
If you have not already registered or can't be there but would like to donate please visit: www.racemenu.com/teamelizabeth
If you register before this weekend is over we can be certain that you will get a T-Shirt...if you wait the t-shirt guarantee goes down a bit! However, if you do wait keep in mind that you will be able to register at the event. Now, if you're still hesitating (even with the t-shirt promise), know that there will be hot Chowder, bananas, water, and coffee at the end of the run and walk, as well as an after race party at Daddy's Beach Club in Hull with Pizza and Music!
Sunday, October 3, 2010
A fall Weekend!
Fall is here and we spent the weekend enjoying it! For the first time in a year I finally feel back in synch with the seasons. Last fall was a whirlwind of diagnostic testing and the beginnings of chemo, winter was more chemo and the start of trips to Maryland, spring started early because we weren't in New England and summer...well summer was recovery time. I'm still recovering from the year but at least I understand the calendar again. Oddly it feels a little bit like having some more control. Clearly I have no control over the seasons but I can control what decorations to put out or when to buy pumpkins (never before October 1) or helping a 3 year old come up with what she wants to be for halloween! Right now I think I may just be loving fall and what it means to me more than I ever have before.
Yesterday Grace and I drove into the Boston Common to see my sister and the Team in Training Team that she helps to coach during one of their practices. The is the TNT Boston Winter team that I am fortunate enough to be the "Honored Hero" for. The runners are training for various races and thus doing various length runs but Grace was ready to clap and jump up and down each time a runner came by or stopped for a quick drink of water. It was great fun to watch her be involved as well!
Last night Adam was cooking Jambalaya and since you can't make good jambalaya in small quantities we invited our good friends and neighbors over to join us for dinner! What a fun time spent together!
Today, was our first time back in our church in almost a year. And what a welcome we received. It is easy to forget or take for granted in "normal" life the communities that are around us but one of the many things that I have taken from this year is not to forget or take for granted those communities. Our church community sent cards, made dinners, emailed, followed my progress on our Caring Bridge Blog, and prayed...a lot. A huge thank you to them for it all, especially the smiles this morning and the hugs and the "it is so nice to see you here". It was a very special reception.
After church we decided to take a walk to a nearby restaurant and then head to the carousel for a ride on the horses! A bit of a blustery fall day (I actually stopped to buy a second sweatshirt from a local shop so I wouldn't freeze on the way home). There is not much like riding a carousel with a 3 year old carousel connoisseur on the horse next to you with your husband standing between to remember how wonderful life is!
This afternoon we were visited by a photographer from the Patriot Ledger to take "natural looking" family shots for the story that is being written about me and the Team Elizabeth Run/Walk coming up on October 24th (You still have plenty of time to register at racemenu.com/TEAMELIZABETH). It was a little weird to pretend to be doing normal things while a camera is flashing in your face but truly the look on Grace's face was priceless. She just didn't get why this strange man was in our house with a big camera and why on earth he would want to take pictures of us reading a book!
Tonight for dinner we met good friends of ours, also in the midst of the nightmare that is cancer. Sometimes it is easiest to spend time with people who "get it" and other times it can be much harder. Our paths with cancer have taken very different courses and the emotions and feelings that go with that are often hard to reconcile. This morning in church our minister talked about being able to be in situations where there is bad and good together and that no matter how difficult it is, it is important to recognize both as valuable and a part of life. (He said it much better than I just wrote that, but I suppose you get the idea). However, regardless of the differences in our cancer nightmares we are friends and I hope friends for a long time. It was wonderful to see them tonight and to be together.
Please remember today or tomorrow to say a prayer for someone, anyone who is struggling. As I have often said you do not need to pray to God (if that is not what you believe) but find your space and comfort and think about and send positive thoughts in the direction of another.
Yesterday Grace and I drove into the Boston Common to see my sister and the Team in Training Team that she helps to coach during one of their practices. The is the TNT Boston Winter team that I am fortunate enough to be the "Honored Hero" for. The runners are training for various races and thus doing various length runs but Grace was ready to clap and jump up and down each time a runner came by or stopped for a quick drink of water. It was great fun to watch her be involved as well!
Last night Adam was cooking Jambalaya and since you can't make good jambalaya in small quantities we invited our good friends and neighbors over to join us for dinner! What a fun time spent together!
Today, was our first time back in our church in almost a year. And what a welcome we received. It is easy to forget or take for granted in "normal" life the communities that are around us but one of the many things that I have taken from this year is not to forget or take for granted those communities. Our church community sent cards, made dinners, emailed, followed my progress on our Caring Bridge Blog, and prayed...a lot. A huge thank you to them for it all, especially the smiles this morning and the hugs and the "it is so nice to see you here". It was a very special reception.
After church we decided to take a walk to a nearby restaurant and then head to the carousel for a ride on the horses! A bit of a blustery fall day (I actually stopped to buy a second sweatshirt from a local shop so I wouldn't freeze on the way home). There is not much like riding a carousel with a 3 year old carousel connoisseur on the horse next to you with your husband standing between to remember how wonderful life is!
This afternoon we were visited by a photographer from the Patriot Ledger to take "natural looking" family shots for the story that is being written about me and the Team Elizabeth Run/Walk coming up on October 24th (You still have plenty of time to register at racemenu.com/TEAMELIZABETH). It was a little weird to pretend to be doing normal things while a camera is flashing in your face but truly the look on Grace's face was priceless. She just didn't get why this strange man was in our house with a big camera and why on earth he would want to take pictures of us reading a book!
Tonight for dinner we met good friends of ours, also in the midst of the nightmare that is cancer. Sometimes it is easiest to spend time with people who "get it" and other times it can be much harder. Our paths with cancer have taken very different courses and the emotions and feelings that go with that are often hard to reconcile. This morning in church our minister talked about being able to be in situations where there is bad and good together and that no matter how difficult it is, it is important to recognize both as valuable and a part of life. (He said it much better than I just wrote that, but I suppose you get the idea). However, regardless of the differences in our cancer nightmares we are friends and I hope friends for a long time. It was wonderful to see them tonight and to be together.
Please remember today or tomorrow to say a prayer for someone, anyone who is struggling. As I have often said you do not need to pray to God (if that is not what you believe) but find your space and comfort and think about and send positive thoughts in the direction of another.
Tuesday, September 28, 2010
Yoga...Can you become addicted?!
Yoga has been recommended to me by friends, doctors, nurses, family members, basically anyone who has been following any of my last year. Its been about a month now that I've been going to Yoga classes at the Y and realized that I have totally become addicted yesterday when I went to a class at 11am then right before bed did a 20 minute class that I downloaded from the website www.yogadownload.com, and then set my alarm to get up early so I could work on a series of poses from a Yoga magazine that I recently purchased in hopes of working up to the Lotus position. I now can't wait to do my bedtime routine tonight, a morning routine tomorrow morning, and a class at the Y. I think I have a problem! But what a problem to have.
It is truly amazing to have the opportunity to build my body back to health. After this year I have a much better understanding of how my body works and what it needs in each moment. I love that I now have the chance to create a physical body from the ground up. Yoga is helping with that. So is the swimming but to be honest its the Yoga that I miss on the days that there isn't a class.
Basically, what I want to say is if you haven't tried it, do. And if you have tried it but didn't love it, try it again. And if you think I'm simply turning into a nut (which is, of course, entirely possible) take a look at what you do to feel good and really embrace it, love what you do, it can only make you happy and healthy.
It is truly amazing to have the opportunity to build my body back to health. After this year I have a much better understanding of how my body works and what it needs in each moment. I love that I now have the chance to create a physical body from the ground up. Yoga is helping with that. So is the swimming but to be honest its the Yoga that I miss on the days that there isn't a class.
Basically, what I want to say is if you haven't tried it, do. And if you have tried it but didn't love it, try it again. And if you think I'm simply turning into a nut (which is, of course, entirely possible) take a look at what you do to feel good and really embrace it, love what you do, it can only make you happy and healthy.
Wednesday, September 22, 2010
What is a Miracle?
What is a Miracle? Each day different people use this word with different meanings and intentions. Often to me it feels as though the word miracle could be replaced with words like Coincidence, Marvel, Rarity, or Surprise. The word miracle also often conjures up an image of God or Gods intervening to cause an event or occurrence to happen. At the root of it I basically hear the word miracle and assume the person is going the route that it is amazing that God (or Gods) were able to step in and fix the problem.
Since returning home from our 4 months in Maryland for treatment I have heard countless times "what a miracle", "you are a miracle", "it is a miracle". So, what exactly is a miracle? This post is, of course, not the end all and be all of the definition of a miracle but simply my thoughts on the word and its meaning.
Is it a miracle when you give birth to a healthy baby? Is it a miracle when you are always late but make it on time to an important appointment? Is it a miracle that in January of this year we were hoping that I would live to see my daughter turn three in June, and then did? Is it a miracle that one team of transplant doctors said they would be willing to do my transplant but given the progression of my disease I would likely not survive, and another team of transplant doctors said we have a research based transplant that we think will help you, and it did? Is it a miracle that we picked team #2 over team #3? Is it a miracle that after almost a year of bad reports and cancer that didn't respond to chemo it looks like I'm going to live a long life anyway?
My quick answer to all of these questions is sort of. And now I shall try to explain.
www.merriam-webster.com defines a miracle in 2 ways:
1). an extraordinary event manifesting divine intervention in human affairs
2). an extremely outstanding or unusual event, thing, or accomplishment
My diagnosis of Non-Hodgkins Lymphoma came almost one year ago. I was 30 years old and as the doctors love to say "otherwise healthy". I was a mother and a wife, a daughter and a sister, a teacher and a friend, and otherwise healthy. Never in a million years did I expect a cancer diagnosis. No one ever does.
Over the past year, I have been listed on dozens of prayer lists at all kinds of religious institutions, both in the United States and some internationally. There have been prayer vigils held in my name. There have been countless fundraisers, gifts, cards, meals, love, and support all from a network that prior to diagnosis I didn't realize was out there. During a great deal of my treatment I prayed and meditated (there were some gaps...God and I weren't on the best of terms for awhile but I think we're better now). Without all of this support, without all of these prayers, would I be here today? There is no way to know. What I do know is that the support and prayers and all the rest of it helped to pull me through a great number of very difficult moments, days, weeks. This is the part that allows me to say yes I am a miracle, my survival today is an ongoing miracle.
But there is another component to the miracle that I can not let go of that to me reaches beyond the dictionary definitions (at least beyond definition #1) and I suppose this is the part where I explain my "sort of" response to the "is this a miracle questions". I have spent the last year working harder then I have ever worked on anything in order to save my life. I have endured countless treatments and procedures (many not so pleasant), I have spent roughly 3 and a half months (not consecutive) as a hospital inpatient. My family and I have been to hell and back, we have lived a nightmare. But today I am here to write about it.
So, do I believe in miracles? Yes I do. But most importantly (to me) I believe that a miracle can not occur without a whole lot of hard work. I believe that there was divine intervention of some sort, I believe that all of the Doctors, Nurses, technologists, aides, and specialists that I have worked with have and continue to have a great deal of responsibility in taking care of my body . I believe that I had and continue to have a great deal of responsibility in taking care of my health and body to continue this miracle that is my life.
I guess I like definition #2 a bit better.
What is your miracle? And how do you define it?
Since returning home from our 4 months in Maryland for treatment I have heard countless times "what a miracle", "you are a miracle", "it is a miracle". So, what exactly is a miracle? This post is, of course, not the end all and be all of the definition of a miracle but simply my thoughts on the word and its meaning.
Is it a miracle when you give birth to a healthy baby? Is it a miracle when you are always late but make it on time to an important appointment? Is it a miracle that in January of this year we were hoping that I would live to see my daughter turn three in June, and then did? Is it a miracle that one team of transplant doctors said they would be willing to do my transplant but given the progression of my disease I would likely not survive, and another team of transplant doctors said we have a research based transplant that we think will help you, and it did? Is it a miracle that we picked team #2 over team #3? Is it a miracle that after almost a year of bad reports and cancer that didn't respond to chemo it looks like I'm going to live a long life anyway?
My quick answer to all of these questions is sort of. And now I shall try to explain.
www.merriam-webster.com defines a miracle in 2 ways:
1). an extraordinary event manifesting divine intervention in human affairs
2). an extremely outstanding or unusual event, thing, or accomplishment
My diagnosis of Non-Hodgkins Lymphoma came almost one year ago. I was 30 years old and as the doctors love to say "otherwise healthy". I was a mother and a wife, a daughter and a sister, a teacher and a friend, and otherwise healthy. Never in a million years did I expect a cancer diagnosis. No one ever does.
Over the past year, I have been listed on dozens of prayer lists at all kinds of religious institutions, both in the United States and some internationally. There have been prayer vigils held in my name. There have been countless fundraisers, gifts, cards, meals, love, and support all from a network that prior to diagnosis I didn't realize was out there. During a great deal of my treatment I prayed and meditated (there were some gaps...God and I weren't on the best of terms for awhile but I think we're better now). Without all of this support, without all of these prayers, would I be here today? There is no way to know. What I do know is that the support and prayers and all the rest of it helped to pull me through a great number of very difficult moments, days, weeks. This is the part that allows me to say yes I am a miracle, my survival today is an ongoing miracle.
But there is another component to the miracle that I can not let go of that to me reaches beyond the dictionary definitions (at least beyond definition #1) and I suppose this is the part where I explain my "sort of" response to the "is this a miracle questions". I have spent the last year working harder then I have ever worked on anything in order to save my life. I have endured countless treatments and procedures (many not so pleasant), I have spent roughly 3 and a half months (not consecutive) as a hospital inpatient. My family and I have been to hell and back, we have lived a nightmare. But today I am here to write about it.
So, do I believe in miracles? Yes I do. But most importantly (to me) I believe that a miracle can not occur without a whole lot of hard work. I believe that there was divine intervention of some sort, I believe that all of the Doctors, Nurses, technologists, aides, and specialists that I have worked with have and continue to have a great deal of responsibility in taking care of my body . I believe that I had and continue to have a great deal of responsibility in taking care of my health and body to continue this miracle that is my life.
I guess I like definition #2 a bit better.
What is your miracle? And how do you define it?
Tuesday, September 14, 2010
How's this for normal?!
Today was Grace's first day of preschool! She was so excited about her backpack and lunch bag that it took quite a bit of convincing yesterday that we didn't need to fill every container with food for lunch! She is only going two days a week and although I managed to fill the time today it was very weird. A good weird though. A weird that felt like "normal"...I'm a mom with a child who is old enough to attend a preschool and that's what she's doing. I'm a mom who has had a hell of a year but am here to watch my little girl march into preschool with her little purple backpack and lunch bag. I'm a mom who was able to drop her off and than hit the gym for a mile walk (getting ready for the TE 1st Annual Walk/Run). I'm a normal mom with some health issues that make life a little more interesting but no less livable.
Take a minute and think about what your normal is? Does it work for you or does it need adjusting?
Take a minute and think about what your normal is? Does it work for you or does it need adjusting?
Friday, September 10, 2010
Sensitivity training perhaps...?
Now as most of you who have been reading my blogs this year know I don't like to do a lot of complaining. For a moment today I'm letting it out. A bit of a vent if you like!
I realize that many people traveling through airports are off on exotic and much needed vacations or they're returning from the time of their lives on an island somewhere, I also realize that the security staff in airports are usually doing the best they can in a situation that isn't all that fun for anyone.
So today I did my part, I took off my shoes, belt, jewelry, and jacket, I pulled my laptop out of the bag, and I had already bagged all of my medications in clear bags (this includes thee plethora of refills that I get on these visits to MD) and placed them in their own tray too. I do all of this in hopes of not requiring a bag check and the delay this requires. Alas, I was required to stop for a bag check. Here, again, I would like to acknowledge the difficult situation that these security folks are in BUT would it be possible to show a teeny bit of compassion for the traveler who clearly wasn't on vacation and clearly is dealing with something medical (that any idiot could identify as serious by quantity of meds alone)? Would it be possible to pause for just a moment and think to one's security self "wow, it looks like this lady has been through a lot already, maybe I shouldn't give her attitude"? It's not as though I travel with all these meds just to annoy the security people, I don't get any joy in slowing down the line as I pull everything out of the right bag and I really don't love the nasty attitude! So there is my vent for the day.
To all the security guards out there who remember to smile and recognize that everyone is walking in their own set of shoes (not at security of course) but with their own set of life's issues, thank you, I appreciate each of you. And to those of you in the security business who think that me and my medication are there to make your life harder, please step back and imagine what it must be like to take all of those medications. Lastly, on a side note, I will not complain about taking those medications for the simple reason that I am here living life and I get to take them.
I realize that many people traveling through airports are off on exotic and much needed vacations or they're returning from the time of their lives on an island somewhere, I also realize that the security staff in airports are usually doing the best they can in a situation that isn't all that fun for anyone.
So today I did my part, I took off my shoes, belt, jewelry, and jacket, I pulled my laptop out of the bag, and I had already bagged all of my medications in clear bags (this includes thee plethora of refills that I get on these visits to MD) and placed them in their own tray too. I do all of this in hopes of not requiring a bag check and the delay this requires. Alas, I was required to stop for a bag check. Here, again, I would like to acknowledge the difficult situation that these security folks are in BUT would it be possible to show a teeny bit of compassion for the traveler who clearly wasn't on vacation and clearly is dealing with something medical (that any idiot could identify as serious by quantity of meds alone)? Would it be possible to pause for just a moment and think to one's security self "wow, it looks like this lady has been through a lot already, maybe I shouldn't give her attitude"? It's not as though I travel with all these meds just to annoy the security people, I don't get any joy in slowing down the line as I pull everything out of the right bag and I really don't love the nasty attitude! So there is my vent for the day.
To all the security guards out there who remember to smile and recognize that everyone is walking in their own set of shoes (not at security of course) but with their own set of life's issues, thank you, I appreciate each of you. And to those of you in the security business who think that me and my medication are there to make your life harder, please step back and imagine what it must be like to take all of those medications. Lastly, on a side note, I will not complain about taking those medications for the simple reason that I am here living life and I get to take them.
Thursday, September 9, 2010
Day +156 Post Transplant
Today is day +156 post transplant and a check-in day with my team at NIH here in Bethesda. A great day! My blood work looks great, some of my meds were changed for the better, and my PET Scan came back (as it did 8 weeks ago) normal...that means no activity showing. In addition, the size of my tumor continues to shrink! And I get to start doing blood work at home once a week instead of twice a week. That's one less needle stick every week and that makes me smile!
As always it was good to see all of the folks at NIH who have been a part of my care since we started visiting NIH in January. Not sure how many of them read this blog but to those of you who do: Thank you for all that you everyday in your jobs. You all have impacted my life in so many tangible and intangible ways. Now, pass that message on to the folks who don't read the blog and tell them to get reading!
Enjoyed a wonderful Jewish New Year's dinner this evening with a friend who I met through NIH and her family. The food was delicious and the company better! Truly a great way to celebrate a good Doctor's visit!
Looking forward to a little site seeing tomorrow as my flight doesn't leave until 5:20pm and all that I am required to do before that is pick up my prescription refills at NIH. Can't wait to get stopped again at security for having so many drugs in my bag...hopefully this time they'll let me keep my toothpaste!
As always it was good to see all of the folks at NIH who have been a part of my care since we started visiting NIH in January. Not sure how many of them read this blog but to those of you who do: Thank you for all that you everyday in your jobs. You all have impacted my life in so many tangible and intangible ways. Now, pass that message on to the folks who don't read the blog and tell them to get reading!
Enjoyed a wonderful Jewish New Year's dinner this evening with a friend who I met through NIH and her family. The food was delicious and the company better! Truly a great way to celebrate a good Doctor's visit!
Looking forward to a little site seeing tomorrow as my flight doesn't leave until 5:20pm and all that I am required to do before that is pick up my prescription refills at NIH. Can't wait to get stopped again at security for having so many drugs in my bag...hopefully this time they'll let me keep my toothpaste!
Monday, September 6, 2010
Team Elizabeth 4 Mile Run/Walk October 24!
Please join us for the 1st Annual Team Elizabeth
4 mile run/walk here in Hull, Massachusetts
4 mile run/walk here in Hull, Massachusetts
October 24, 2010
To Register or Donate Copy and Paste the following link into your address bar:
http://www.racemenu.com/teamelizabeth
Team Elizabeth was named for Elizabeth Hamblin Naylor who battled with non-Hodgkins Lymphoma this past year (and is doing better and better every day!). Our mission is to bring people together - patients, families, health care professionals, and friends - to create a community with a voice and a purpose. As a team, we choose to take action through fundraising for The Leukemia & Lymphoma Society. Together, we take on personal physical challenges while providing positive and active outlets for everyone. As members of Team Elizabeth, we stand and fight against blood cancers.
The Course: Both runners and walkers will leave from Hull High School and follow Main Street to Spring Street. The walkers will turn around just before the Spinnaker Island Causeway and the runners will continue on to Nantasket Ave, Fitzpatrick Way and loop back around. There will be clear course markers and volunteers throughout the course to direct the participants.
TE Spirit Award: Team Elizabeth aims to spread awareness about Lymphoma throughout our communities. The Team Elizabeth Spirit Award will be given to the participant who wears the biggest and brightest neon green outfit on race day! Team Elizabeth is a network of patients, families, health care professionals and friends dedicated to fundraising for the Leukemia & Lymphoma Society. All proceeds will directly benefit patient care and provide funding for blood cancer research.
To Register or Donate Copy and Paste the following link into your address bar:
To Register or Donate Copy and Paste the following link into your address bar:
http://www.racemenu.com/teamelizabeth
Thursday, September 2, 2010
Sunday, September 5, 2010 BBQ by the Beach!
BBQ By The Beach! Hurricane Earl is coming and we've got goods! This Sunday my dear husband will be smoking up pounds of pig and all are invited! Lets get together, see old friends, make some new ones, and eat like...well...pigs! All we ask is for an email to either Adam or myself with how many are coming. Doors open at noon, pulled pork should be ready around 3ish. We're close to the beach and lots of toys! BYOB!
Cancer in too many places.
Last night, due to the excessive heat and total non-interest in cooking dinner we decided to head down to a local place on the beach for some fresh pizza and wings (I enjoyed the pizza while the rest of my fam wolfed down the wings). About 15 minutes in Adam and both agreed that the waitress seemed familiar but couldn't place her. Shortly there after a noticed a small tattoo on the inside of her wrist. It was the customary "cancer ribbon" shape but one side was purple and the other was black. I waited a bit before stopping her to ask about it. As it turns out both her Mother and Aunt are battling their own cancer battles and although both received terminal diagnoses they both continue to fight and live (her Aunt's diagnosis came 11 years ago). The tattoo was to honor these two women in her life...beautiful! It wasn't much later that I realized I recognized the waitress from about 7 years ago when I coached a town league softball team and she (probably 12 or 13 at the time) was my star player. So once again I stopped her to ask if she was in fact the Kayla that I was remembering. It took her a moment but she remembered me and was surprised and happy to learn that my own battle with cancer is going so well these days. It amazes me each day how many places I find cancer and often wonder how I missed it all before. On September 10th at 8pm all three major tv networks will be hosting the Stand Up To Cancer event, tune and and remember that so many are fighting and so many need support.
Tuesday, August 31, 2010
Today...an Anniversary
Today is August 31st, 2010. One year ago today I visited my primary care physician with a cough and some chest pain. I had already self-diagnosed myself with Pleurisy (an infection in the lining of the lung that causes pain when coughing, generally reserved for old men who smoke). Seems like a silly diagnosis in hindsight but I had had it once before and the symptoms fit. It was the first day that teachers were to be back at school and at that point I'd been coughing and uncomfortable for several weeks...it didn't make sense to me to start the school year sick. My Doctor seemed comfortable with my self diagnosis but ordered a chest x-ray to rule out things like pneumonia. My appointment wasn't until late in the day so the radiologist had gone home and wouldn't see the x-ray until the next day. No big deal right?! The following day I received a message on my phone from my doctor asking me to call about my x-ray. I remember thinking this was odd but wasn't too worried about it. We played phone tag that day and I finally got her on the phone the following day (Wednesday, Sept. 2). "There is something on your x-ray. We don't know what it is, it could be as simple as a shadow. I've ordered you a CT Scan for next Tuesday." What?! We tried really hard to spend the next 6 days without stressing out, of course it was a shadow, it couldn't possibly be anything worse than that, I just have a cough.
When my CT scan was finished the technician told me that my doctor would call me within 48 hours with the results. She called me an hour and a half later and had already scheduled me an appointment with a thoracic surgeon at The Brigham and Women's Hospital. "You have a very large mass in the right, center of your chest". Again, What?! The diagnosis process began there. I'm sure I'll write more about it in the future but for now that's enough for me.
So, today is the one year anniversary. In many ways it feels like 10 years. I have been through so many tests and procedures and nightmare situations and yet here I am today living. My family has been living this nightmare of a roller coaster ride with me and I thank them everyday, not always verbally but always in my heart. I am here today for a number of reasons but my family gave me the biggest reason there is to keep fighting, always keep fighting. I am here today living my life to the best of my ability each and every day. Taken life one step, one day at a time. Appreciating the little things as well as the big. Today it has been one year and I look forward to being here to see many, many more of these "anniversaries" come and go.
When my CT scan was finished the technician told me that my doctor would call me within 48 hours with the results. She called me an hour and a half later and had already scheduled me an appointment with a thoracic surgeon at The Brigham and Women's Hospital. "You have a very large mass in the right, center of your chest". Again, What?! The diagnosis process began there. I'm sure I'll write more about it in the future but for now that's enough for me.
So, today is the one year anniversary. In many ways it feels like 10 years. I have been through so many tests and procedures and nightmare situations and yet here I am today living. My family has been living this nightmare of a roller coaster ride with me and I thank them everyday, not always verbally but always in my heart. I am here today for a number of reasons but my family gave me the biggest reason there is to keep fighting, always keep fighting. I am here today living my life to the best of my ability each and every day. Taken life one step, one day at a time. Appreciating the little things as well as the big. Today it has been one year and I look forward to being here to see many, many more of these "anniversaries" come and go.
Sunday, August 29, 2010
A weekend to love living!
I am certain that I could give a reason everyday to remember to appreciate, love, and not take for granted your life. Right now, however, I want to tell you about my weekend and how it reminded me to appreciate, love, and not take for granted each day that I live. If I have counted correctly then Friday was day +143 post transplant and I started the day with a three mile bike ride with Grace on the back in her seat. To be totally honest the start was a touch ungraceful and resulted with a bruise here and there (on me not Grace) but the ride itself was incredible! The wind, and the sun (not to worry I wore plenty of sun screen and long sleeves) and Grace beyond me shouting "Faster Mommy Faster!" It was perfect! And it was something that not that many weeks ago I'm not sure I could or would have attempted and not that many months ago feared I would never be able to do.
Saturday morning I got up early to meet the Team in Training Winter Team out of Boston. I was asked to be their "Patient Ambassador", basically putting a face to the disease that they are running and fundraising for. I'm not wild about the term "Patient Ambassador" and mentioned that Saturday morning so it was suggested that we could use "Honored Hero"...I like it. I had the opportunity to say a few words to the team before their run about the past year and about what Team in Training has meant to me. I hope it was interesting to them as it was a positive experience for me. I look forward to visiting at future practices and cheering these runners on while they work to help support research to find a cure for Leukemia and Lymphoma. On a side note, if anyone has any interest in more information about Team in Training or the Leukemia and Lymphoma Society please don't hesitate to email me.
My Saturday afternoon was spent with a mini shopping spree at Old Navy...you can't beat 30% off with 5% of my sales going to the Leukemia and Lymphoma Society. And since chemo and my transplant left me several sizes smaller than I was it is necessary to periodically add to the new wardrobe! The rest of the afternoon was spent by the condo pool with Grace. I under an umbrella while Grace managed to con several different neighbors to play with her in the water. Thank you to each and every one of them! We ended the evening having dinner by the pool with friends and neighbors, perfect!
Today, day +145 included a trip to see and ride on Thomas the Tank Engine, a carousel ride, and Grace's first amusement ride by herself. She was quite the pilot of the Red Baron plane ride! And lastly, this evening Adam and I enjoyed a dinner out followed by a concert that included The Blind Boys of Alabama and Dr. John and the Lower 911! It was an incredible show!
So, my challenge to you as you begin a new week and a new Monday is to find the reason (or many reasons) to appreciate, love, and not take for granted the day you have been given.
Saturday morning I got up early to meet the Team in Training Winter Team out of Boston. I was asked to be their "Patient Ambassador", basically putting a face to the disease that they are running and fundraising for. I'm not wild about the term "Patient Ambassador" and mentioned that Saturday morning so it was suggested that we could use "Honored Hero"...I like it. I had the opportunity to say a few words to the team before their run about the past year and about what Team in Training has meant to me. I hope it was interesting to them as it was a positive experience for me. I look forward to visiting at future practices and cheering these runners on while they work to help support research to find a cure for Leukemia and Lymphoma. On a side note, if anyone has any interest in more information about Team in Training or the Leukemia and Lymphoma Society please don't hesitate to email me.
My Saturday afternoon was spent with a mini shopping spree at Old Navy...you can't beat 30% off with 5% of my sales going to the Leukemia and Lymphoma Society. And since chemo and my transplant left me several sizes smaller than I was it is necessary to periodically add to the new wardrobe! The rest of the afternoon was spent by the condo pool with Grace. I under an umbrella while Grace managed to con several different neighbors to play with her in the water. Thank you to each and every one of them! We ended the evening having dinner by the pool with friends and neighbors, perfect!
Today, day +145 included a trip to see and ride on Thomas the Tank Engine, a carousel ride, and Grace's first amusement ride by herself. She was quite the pilot of the Red Baron plane ride! And lastly, this evening Adam and I enjoyed a dinner out followed by a concert that included The Blind Boys of Alabama and Dr. John and the Lower 911! It was an incredible show!
So, my challenge to you as you begin a new week and a new Monday is to find the reason (or many reasons) to appreciate, love, and not take for granted the day you have been given.
Friday, August 27, 2010
Blog Title Explanation
Many of you have probably figured out the meaning behind the name of this blog but for those who haven't I thought I'd take a minute and explain it a bit. I was born on May 4, 1979. I received a bone marrow transplant (my sister was my donor) on April 6, 2010. I said pretty quickly that this equals 2 birthdays! Two times a year to formally celebrate my life! (A quick moment to thank my brother in law, Andrew, for sharing the April birthday with me). I do my best to celebrate my life each and everyday but why can't I have 2 parties now?! The answer, I can! And plan too. So, while cancer has taken much from me and my family over the last year it has also given a great deal and 2 birthdays is certainly a gift!
Sunday, August 22, 2010
Inspiration at the Y
Since coming home from Maryland about 5 weeks ago life has been quite an adjustment. This is an adjustment we expected but couldn't really prepare for. How do you prepare to reenter a world that has continued forward while your world has been put on hold and fast forward all at the same time? How do prepare to see friends and family whom you have not seen for maybe weeks, months or almost a year? How do relearn what it means to live life, really live it, while still getting bloodwork twice a week and always waiting for the next 4 week check up in Maryland? You don't really prepare for it. You take it one day at a time, putting one foot in front of the other until you have reached the goal.
Back in October when I was doing the first type of chemo that we tried my goals in the days following treatment would be something like this: Today I will get out of bed long enough to get the mail. Or Today I will move to the couch. I've come a long way from simply getting to the couch or the mailbox. I am now swimming at the Y 3 days a week and I've started a once a week yoga class there as well. I'm able to play with my daughter for hours at a time not minutes. And I even went to a birthday party for a dear friend last night! One of the many, many, many things that I have learned throughout this experience is that goals are important. It was important for me last fall to get to the mailbox just as it is important for me now to get to the pool. On the wall at one end of the pool the Y has hung 4 banners each reads a single word. I memorized them within my first couple of laps on my first day at the pool: Responsibility, Respect, Honesty, Caring. To be totally truthful I memorized them quickly because it was easier for me to keep track of how far I had swum by which banner I was on than to try and count and swim at the same time. However, those banners have become a mantra for me, an inspiration. Each lap I swim lines up with one of those words and that is what I think about while I swim that lap.
Here is a small taste of what goes through my mind with each banner:
Responsibility: I am taking responsibility for the health of my body. I am taking responsibility for my mental, physical and emotional health. I am taking responsibility for my life.
Respect: By swimming these laps I am respecting the body that I am so very blessed to have. By swimming these laps I am respecting those cancer survivors and patients who can't yet get in the pool or won't be able to get in the pool. By swimming these laps I am respecting the life that I have the opportunity to live.
Honesty: Honestly can I swim one more lap, yes or no? This swimming is good for me but I can overdo it. Honestly, it does not matter that the woman in the lane next to me (probably 30 years my senior) is out swimming me tenfold. Honestly what matters is that I am here and I am trying.
Caring: I am caring about my body. I am caring about my life. I am caring about my family. I am caring about my friends. I am caring about the journey that I have been on and will continue to grow on.
If you have the chance to really think about these words and put them into your life I am certain that you will find great things inside of you. You will think great thoughts and set and achieve great goals. We all, no matter what life has thrown at us, can take responsibility, have respect, be honest, and care. Give it a try, you'll be glad you did. And as always, hug someone you love today.
Back in October when I was doing the first type of chemo that we tried my goals in the days following treatment would be something like this: Today I will get out of bed long enough to get the mail. Or Today I will move to the couch. I've come a long way from simply getting to the couch or the mailbox. I am now swimming at the Y 3 days a week and I've started a once a week yoga class there as well. I'm able to play with my daughter for hours at a time not minutes. And I even went to a birthday party for a dear friend last night! One of the many, many, many things that I have learned throughout this experience is that goals are important. It was important for me last fall to get to the mailbox just as it is important for me now to get to the pool. On the wall at one end of the pool the Y has hung 4 banners each reads a single word. I memorized them within my first couple of laps on my first day at the pool: Responsibility, Respect, Honesty, Caring. To be totally truthful I memorized them quickly because it was easier for me to keep track of how far I had swum by which banner I was on than to try and count and swim at the same time. However, those banners have become a mantra for me, an inspiration. Each lap I swim lines up with one of those words and that is what I think about while I swim that lap.
Here is a small taste of what goes through my mind with each banner:
Responsibility: I am taking responsibility for the health of my body. I am taking responsibility for my mental, physical and emotional health. I am taking responsibility for my life.
Respect: By swimming these laps I am respecting the body that I am so very blessed to have. By swimming these laps I am respecting those cancer survivors and patients who can't yet get in the pool or won't be able to get in the pool. By swimming these laps I am respecting the life that I have the opportunity to live.
Honesty: Honestly can I swim one more lap, yes or no? This swimming is good for me but I can overdo it. Honestly, it does not matter that the woman in the lane next to me (probably 30 years my senior) is out swimming me tenfold. Honestly what matters is that I am here and I am trying.
Caring: I am caring about my body. I am caring about my life. I am caring about my family. I am caring about my friends. I am caring about the journey that I have been on and will continue to grow on.
If you have the chance to really think about these words and put them into your life I am certain that you will find great things inside of you. You will think great thoughts and set and achieve great goals. We all, no matter what life has thrown at us, can take responsibility, have respect, be honest, and care. Give it a try, you'll be glad you did. And as always, hug someone you love today.
Wednesday, August 18, 2010
Benedryl Fog
It will be so nice to have a day or two when something totally bizarre doesn't happen to me. But alas yesterday was not that day. Last night while watching some TV with Adam I decided to try some of the cashews that he was munching on. Turns out, this was a bad idea! Apparently I have what looks like a cashew allergy and was lucky enough to spend about 4 hours at the emergency room with my neighbor and friend John. We left Adam at home to be here for his own sleep and in case Grace were to wake up...no need to freak her out so soon after a year of many freaked out moments. Up to this point in my life I have never been allergic to any food and thus the reaction was a little weird to identify at first. I just kept sitting on the couch saying "something isn't quite right". I finally gave a call to the transplant unit down at NIH (you've got to love that when I call a Doctor it isn't the one who is 20 minutes away but instead I call the one who is 10+ hours away...what can I say, I trust my team above all else). The transplant unit said in no uncertain terms that I was to get to the emergency room even if it meant calling 911. For those of you who have been to my house you know that calling 911 on the phone would almost be silly, we could probably just yell across the street and call them that way. So at this point we're unsure if its only cashews (oddly enough I had a peanut better sandwich for lunch yesterday and had no problem whatsoever) or how it may or may not be related to my GVHD but NIH is looking into such things for me.
Today has been a great day so far despite the slight benedryl fog that I am in! Grace hasn't seemed to notice it so I suppose that's a good thing. Hope all are well.
Today has been a great day so far despite the slight benedryl fog that I am in! Grace hasn't seemed to notice it so I suppose that's a good thing. Hope all are well.
Monday, August 16, 2010
Sunrise on Nantasket Beach
Yesterday morning, like most mornings I was awake well before 5am. I lay in bed trying to sleep for quite a while before deciding, as I do most mornings that this is futile and I should just get up. Yesterday was a little different though, I decided to go for a walk down by the beach. This isn't something that I can do during the day without boatloads of sunscreen, a large hat and long sleeves (needless to say, this gets hot). But, at 5am it is still slightly dark and not all that hot...perfect for walking by the beach. At the start of my walk I met a man with his new puppy who had just had her first walk on the beach and was wildly excited about it. Honestly, if it wouldn't have been totally ridiculous I might of been jumping up and down and shaking my tail in exciting just as this puppy was doing. Not only was this my first walk at the beach since last fall but it is amazing to remember that I am lucky to have the opportunity to get up everyday no matter how early it may be. But, folks, the best is yet to come...I was just in time for the perfect sunrise. If you haven't been to the sunrise in a while, or ever, please take the time to do so. It changes you or at the very least it changes your day. If you can't get to the sunrise anytime soon please enjoy the picture of what I saw and have posted here. And remember to appreciate the little things, like a puppy at her first sunrise.
Friday, August 13, 2010
Healing and Control
It has not yet been a year since I was diagnosed with Primary Mediastinal B-Cell Lymphoma (a form of Non-Hodgkins Lymphoma. It feels like its been a decade. In January of this year we began using the site Caring Bridge to share with our friends and family my progress, setbacks, and journey (which continues) through cancer. There was and continues to be much to be said and shared but I've decided to move from Caring Bridge to this blog. It is a control decision for me. Anyone who has experienced cancer closely knows that one of the hardest parts is the loss of control in almost all parts of your life. For me I am now choosing to write about the healing and growing part of this lifelong journey that I am on, in a different forum. Basically, what I am trying to say is we began using Caring Bridge so that we could easily keep friends and family updated on my medical condition as well as share some funny stories along the way. Caring Bridge was what we used because I was very sick. I am not cured yet but I am much better than I was and although I have a gazillion pills to take every day I am here every day to take them. This blog is about healing and about gaining back control. I hope that you will enjoy, both new readers as well as those of you who have followed the Caring Bridge posts.
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