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.
Tuesday, September 28, 2010
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.
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