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On October 27th I had my most recent oncology appointment with Dr. Carraway. While my white counts remain consistently below normal, she doesn't seem worried since my neutrophils are above normal. The low count is probably a result of my oral chemo which I continue to take daily.
I am still having some stomach problems though, cramping and all that goes with it. I've been tested for Celiac and thankfully do not have that, but there is some speculation that I may have a gluten sensitivity. Coupled with lactose intolerance I have a lot to learn about reading nutrition labels. Dr. Carraway also tested me for c-diff (colitis), CMV (which I had once before), and a couple of other bacteria infections that might be lingering from my transplant. She has also not ruled out Graft Versus Host (transplant rejection). I guess this is just the way life is going to be for me.
I am also pleased to report that I no longer need any more Bone Marrow Biopsies done! Yeah!!! Last Thursday and from now on I will be getting a specialized blood test (Sorry, I can't remember the name of it) that will provide indications if something is amiss - not that she or I think that there will be any problems.
So, I'm feeling quite pleased with things from a health standpoint and look forward to spending another wonderful Thanksgiving with my family. Blessings to you all.
Tuesday, November 1, 2011
Tuesday, October 18, 2011
The Baltimore Marathon
Well, the Baltimore Marathon was this past Saturday, October 15th and other than a lot of wind, the weather was nearly perfect. Stephanie did well in her time and finished feeling tired, but pretty good overall. Below is a little something that she wrote to thank everyone again for their support, and to express her sentiment about what it feels like to be involved with such a worthy cause. I was on-hand this time, not only as a spectator, mother, and supporter, but also as a volunteer. My friend, Jackie and I spent a good part of the day setting up and handing out water and Gatorade at mile 12/25. It was a very rewarding experience for both of us. We were then able to walk to the finish line to meet Stephanie and two of her friends, Flo and Marie, who were first time marathoners.
From me to those who donated – Thanks for your support and generous donation to Stephanie’s efforts. Without people like you, the Leukemia and Lymphoma Society wouldn’t be able to make the strides that they have in curing blood cancers. These in-roads have been instrumental in also finding cures and treatments for other types of cancer. From the bottom of my heart, I appreciate it.Love, Bev
Baltimore Running Festival!
by Stephanie Neukum on Saturday, October 15, 2011 at 8:27pm
Major thanks to my mom and her friend Jackie, who spent the morning volunteering at the TNT water stop and then spent the afternoon and evening celebrating with me.
And kudos and thanks to Flo and Marie who ran their first marathon today!!! Like everything else, they conquered the marathon with humor and grace. Good friends make life sweeter and running bearable.
From me to those who donated – Thanks for your support and generous donation to Stephanie’s efforts. Without people like you, the Leukemia and Lymphoma Society wouldn’t be able to make the strides that they have in curing blood cancers. These in-roads have been instrumental in also finding cures and treatments for other types of cancer. From the bottom of my heart, I appreciate it.Love, Bev
Baltimore Running Festival!by Stephanie Neukum on Saturday, October 15, 2011 at 8:27pm
The Baltimore Running Festival was today. I just felt a need to type up a little note and thank everyone for the good wishes and support. You might know that I did the Disney marathon in January, as well. For both events, I trained with Team in Training and raised money for the Leukemia and Lymphoma society. It was really the idea of raising money for this great cause that got me started. My mom was diagnosed with leukemia in 2009 and had a bone marrow transplant in May 2009. I’m happy to say that she is doing great and is expected to life along, full life. But, it certainly was scary when she was first diagnosed. Great strides have been made in the treatment of blood cancers. Survival rates are up, but there is still a lot to be done. I wish every family could have the good outcome that mine has had.
Anyway, for some inexplicable reason, after Disney, I thought I would keep going. Maybe it was because the cause is so dear to me, or because the people involved with TNT are so great and supportive. Maybe it was partly because doing things that are hard to do is immensely satisfying. Just maybe, I like to have a project that takes me out of my comfort zone.
Thank you, Baltimore, for cheering and clapping for strangers today! You kept me going.
Thanks so much to friends and family for the supportive notes and posts these past few days. Especially thank you to those who donated money. And if you didn’t donate this time, don’t worry I’ll surely hit you up next time!
Major thanks to my mom and her friend Jackie, who spent the morning volunteering at the TNT water stop and then spent the afternoon and evening celebrating with me.
Huge thanks to Nicole, Scott, Tracey and all the TNTers for all the help and advice along the way.
And kudos and thanks to Flo and Marie who ran their first marathon today!!! Like everything else, they conquered the marathon with humor and grace. Good friends make life sweeter and running bearable.
Friday, September 23, 2011
Where Has The Summer Gone?
September is Leukemia Lymphoma and Myeloma Awareness Month!
It's been quite a while since I've posted. As you might expect, Ray and I have had a busy summer. We got to spend quite a bit of time on our boat and also spent a couple of weeks in Ocean City. It was great. Now it's September and I am back in graduate school and volunteering at the Pediatric Oncology Unit at Johns Hopkins one morning a week. My daugher, Stephanie is gearing up and has begun her training for the Baltimore Half Marathon that will take place on October 15th. She is running in my honor. She does this through Team-In-Training which is sponsored by the Leukemia Lymphoma Society. It is such a worthy cause. The disesae that I had was once inevitably fatal. Because of events like this, the LLS funds research in 124 labs and universities all over the world. Much of the research done there has not only made blood cancers a cureable disease, but has also made great in-roads into finding cures and treatments for other types of cancers.
My next oncology appointment is October 27th. I am hoping that I won't have to get a bone marrow biopsy this visit, but I know that another one will be scheduled before Christmas. As much as I hate getting them, I always feel relieved when I get the results that say, "still 100% donor." That's the thing with cancer - once you've had it you worry that you'll get it again. I don't think there is a day that goes by that I don't think about it. Most time I think, "God, I am so grateful," and then other times I think, "could that ache be sometime more than just an ache." Alas, life goes on. Happy Fall!
It's been quite a while since I've posted. As you might expect, Ray and I have had a busy summer. We got to spend quite a bit of time on our boat and also spent a couple of weeks in Ocean City. It was great. Now it's September and I am back in graduate school and volunteering at the Pediatric Oncology Unit at Johns Hopkins one morning a week. My daugher, Stephanie is gearing up and has begun her training for the Baltimore Half Marathon that will take place on October 15th. She is running in my honor. She does this through Team-In-Training which is sponsored by the Leukemia Lymphoma Society. It is such a worthy cause. The disesae that I had was once inevitably fatal. Because of events like this, the LLS funds research in 124 labs and universities all over the world. Much of the research done there has not only made blood cancers a cureable disease, but has also made great in-roads into finding cures and treatments for other types of cancers.
My next oncology appointment is October 27th. I am hoping that I won't have to get a bone marrow biopsy this visit, but I know that another one will be scheduled before Christmas. As much as I hate getting them, I always feel relieved when I get the results that say, "still 100% donor." That's the thing with cancer - once you've had it you worry that you'll get it again. I don't think there is a day that goes by that I don't think about it. Most time I think, "God, I am so grateful," and then other times I think, "could that ache be sometime more than just an ache." Alas, life goes on. Happy Fall!
Friday, June 24, 2011
Good News Update
Well, it's been quite a while since I've written, but that's mostly because I am busy with all kinds of things. Here is what is going on:
1 - All of my neurological tests came back and nothing was found. What was believed to be a TIA that I had last February was probably Trans Global Amnesia (TGA). There is no cause and there is no cure, apparently it's just something that happens sometimes and may never happen again.
2 - My latest Bone Marrow Biopsy was June 9th and I'm still 100% donor. My next oncology appointment is June 30th and I am hoping that she will tell me that I won't have to have another biopsy for 6 months. All of my liver and kidney functions are fine. My B-12 levels, which were low, are now stable. I am taking one B-12 pill a day (250 mcg). It seems to have made a vast difference in my energy level.
3 - While I still have some minor problems with my stomach, if I'm vigilant about what I eat I can handle my IBS pretty well.
4 - I am up to date on all of my childhood immunizations.
5 - I just celebrated the two-year anniversary of my transplant. My brother is doing great as well and I hope to see him this summer.
6 - I am back in graduate school and am taking a memoir class. Guess what my memoir is about? You guessed it! My professor loves my work and says that I need to turn it into a book. I think I will - I am feeling incredibly inspired.
And, so, I guess you can tell that my life is pretty normal right now. I am having fun and enjoying myself. I am grateful for everyday and for the life that I have been given.
Stay tuned as I will post from time-to-time.
1 - All of my neurological tests came back and nothing was found. What was believed to be a TIA that I had last February was probably Trans Global Amnesia (TGA). There is no cause and there is no cure, apparently it's just something that happens sometimes and may never happen again.
2 - My latest Bone Marrow Biopsy was June 9th and I'm still 100% donor. My next oncology appointment is June 30th and I am hoping that she will tell me that I won't have to have another biopsy for 6 months. All of my liver and kidney functions are fine. My B-12 levels, which were low, are now stable. I am taking one B-12 pill a day (250 mcg). It seems to have made a vast difference in my energy level.
3 - While I still have some minor problems with my stomach, if I'm vigilant about what I eat I can handle my IBS pretty well.
4 - I am up to date on all of my childhood immunizations.
5 - I just celebrated the two-year anniversary of my transplant. My brother is doing great as well and I hope to see him this summer.
6 - I am back in graduate school and am taking a memoir class. Guess what my memoir is about? You guessed it! My professor loves my work and says that I need to turn it into a book. I think I will - I am feeling incredibly inspired.
And, so, I guess you can tell that my life is pretty normal right now. I am having fun and enjoying myself. I am grateful for everyday and for the life that I have been given.
Stay tuned as I will post from time-to-time.
Tuesday, April 19, 2011
Good News About Gleevec
As the two year anniversary of my bone marrow transplant approaches, I was pleased to read this interesting tidbit in the Leukemia Lymphoma Society Newsletter this month. Here it is verbatim:
Gleevec Gets High Marks for Leukemia Treatment
Study Shows the Drug Is a Successful Therapy for Chronic Myelogenous Leukemia
By Salynn Boyles,WebMD Health News
Reviewed by Laura J. Martin, MD
March 22, 2011 -- When Jerry Mayfield was diagnosed with leukemia in 1999 his doctors gave him about three years to live. Twelve years later, Mayfield says he feels just fine. What makes his survival story so remarkable is that it is not remarkable at all.
Mayfield has the blood cancer chronic myelogenous leukemia (CML), and he was among the first patients with the disease treated with the targeted biologic drug Gleevec. Now new research confirms that the drug has transformed a previously fatal leukemia into a manageable chronic disease for many patients who take it.
Life Expectancy Improves
CML patients taking Gleevec (imatinib) were followed for up to eight years. In order to be enrolled in the study, patients needed to be incomplete remission after two years of starting the drug, and the study confirmed that they could expect to live as long as people without cancer. Gleevec and two second-generation CML drugs that came after it are success stories in targeted cancer therapy.
Before Gleevec’s introduction a decade ago, fewer than half of patients with CML survived for more than seven years and the main drug treatment -- interferon -- left most people feeling miserable with fatigue and persistent flu-like symptoms. Most patients who take Gleevec respond well to treatment and the new research confirmed that serious side effects are uncommon.
“This is the first study to show that a cancer that cannot be cured by surgery can be controlled to the point that patients have a normal life expectancy,” study researcher Carlo Gambacorti-Passerini, MD, of Italy’s University of Milano Bicocca tells WebMD. “This is quite remarkable.”
Checking for Adverse Events
The 832 patients in the study were followed for an average of about five years. Twenty deaths occurred during follow-up, for a death rate of 4.8%. This was similar to the death rate that would be expected among people of the same age in the general population, Gambacorti-Passerini says.
Serious adverse events, including cardiovascular and digestive system problems, were reported in 139 patients, but only 27 cases were considered possibly related to Gleevec treatment. Less serious, treatment-related adverse events were more common, occurring in more than half of patients. They included muscle cramps, weakness, diarrhea, skin fragility, and swelling.
The research was funded by Italy’s drug safety agency and it included patients treated in academic and research centers and community-based hospitals. The study is published online in the Journal of the National Cancer Institute.
Why Does Gleevec Work So Well?
While other targeted drug treatments are being used for other cancers, they have not proven to be game changers like Gleevec and two other targeted CML drugs: Tasigna (nilotinib) and Sprycel (dasatinib).
Johns Hopkins University associate professor of oncology B. Douglas Smith, MD, says this is not surprising. “CML is a pretty simple cancer and we know a lot about it,” he tells WebMD. Patients with CML have a specific genetic abnormality that causes the disease. Gleevec and the other targeted treatments work by blocking the cancer-promoting enzyme created by this abnormality. “Most cancers have multiple genetic hits, so it is not surprising that a single drug targeting one thing would not be as effective,” he says.
In an editorial published with the study, Smith writes that confirming the long-term safety and effectiveness of targeted drug treatments for CML should spur research to find a cure for the disease. Patients must stay on the targeted drugs for the rest of their lives and treatment with Gleevec can cost anywhere from $30,000 to $100,000 a year. “We now know that patients do very well on these drugs, so we need to build on this success and look for ways to add to these therapies to achieve a cure,” he says.
Gina Russo, of the Leukemia Lymphoma Society, says she is optimistic that targeted treatments will prove useful for more and more cancers. “This is a model for the treatment of other blood cancers and solid tumors,” she tells WebMD.
Second-Generation Drugs
While Jerry Mayfield believes he would not be alive without Gleevec, he is among the minority of patients to develop resistance to the drug. After about three years on the targeted therapy it stopped working for him. He joined an experimental trial for the now-approved second-generation drug Sprycel in 2004 and is now responding well to the third-generation experimental drug ponatinib, being developed by ARIAD Pharmaceuticals of Cambridge, Mass. Now age 62, Mayfield is retired, living in Bloomington, Ill. “I’ve certainly been at the right place at the right time and with a little luck and a little research and a little persistence, I’m still here and I’m still kicking,” he says.
So, it appears that my story will have a happy ending after all.
Gleevec Gets High Marks for Leukemia Treatment
Study Shows the Drug Is a Successful Therapy for Chronic Myelogenous Leukemia
By Salynn Boyles,WebMD Health News
Reviewed by Laura J. Martin, MD
March 22, 2011 -- When Jerry Mayfield was diagnosed with leukemia in 1999 his doctors gave him about three years to live. Twelve years later, Mayfield says he feels just fine. What makes his survival story so remarkable is that it is not remarkable at all.
Mayfield has the blood cancer chronic myelogenous leukemia (CML), and he was among the first patients with the disease treated with the targeted biologic drug Gleevec. Now new research confirms that the drug has transformed a previously fatal leukemia into a manageable chronic disease for many patients who take it.
Life Expectancy Improves
CML patients taking Gleevec (imatinib) were followed for up to eight years. In order to be enrolled in the study, patients needed to be incomplete remission after two years of starting the drug, and the study confirmed that they could expect to live as long as people without cancer. Gleevec and two second-generation CML drugs that came after it are success stories in targeted cancer therapy.
Before Gleevec’s introduction a decade ago, fewer than half of patients with CML survived for more than seven years and the main drug treatment -- interferon -- left most people feeling miserable with fatigue and persistent flu-like symptoms. Most patients who take Gleevec respond well to treatment and the new research confirmed that serious side effects are uncommon.
“This is the first study to show that a cancer that cannot be cured by surgery can be controlled to the point that patients have a normal life expectancy,” study researcher Carlo Gambacorti-Passerini, MD, of Italy’s University of Milano Bicocca tells WebMD. “This is quite remarkable.”
Checking for Adverse Events
The 832 patients in the study were followed for an average of about five years. Twenty deaths occurred during follow-up, for a death rate of 4.8%. This was similar to the death rate that would be expected among people of the same age in the general population, Gambacorti-Passerini says.
Serious adverse events, including cardiovascular and digestive system problems, were reported in 139 patients, but only 27 cases were considered possibly related to Gleevec treatment. Less serious, treatment-related adverse events were more common, occurring in more than half of patients. They included muscle cramps, weakness, diarrhea, skin fragility, and swelling.
The research was funded by Italy’s drug safety agency and it included patients treated in academic and research centers and community-based hospitals. The study is published online in the Journal of the National Cancer Institute.
Why Does Gleevec Work So Well?
While other targeted drug treatments are being used for other cancers, they have not proven to be game changers like Gleevec and two other targeted CML drugs: Tasigna (nilotinib) and Sprycel (dasatinib).
Johns Hopkins University associate professor of oncology B. Douglas Smith, MD, says this is not surprising. “CML is a pretty simple cancer and we know a lot about it,” he tells WebMD. Patients with CML have a specific genetic abnormality that causes the disease. Gleevec and the other targeted treatments work by blocking the cancer-promoting enzyme created by this abnormality. “Most cancers have multiple genetic hits, so it is not surprising that a single drug targeting one thing would not be as effective,” he says.
In an editorial published with the study, Smith writes that confirming the long-term safety and effectiveness of targeted drug treatments for CML should spur research to find a cure for the disease. Patients must stay on the targeted drugs for the rest of their lives and treatment with Gleevec can cost anywhere from $30,000 to $100,000 a year. “We now know that patients do very well on these drugs, so we need to build on this success and look for ways to add to these therapies to achieve a cure,” he says.
Gina Russo, of the Leukemia Lymphoma Society, says she is optimistic that targeted treatments will prove useful for more and more cancers. “This is a model for the treatment of other blood cancers and solid tumors,” she tells WebMD.
Second-Generation Drugs
While Jerry Mayfield believes he would not be alive without Gleevec, he is among the minority of patients to develop resistance to the drug. After about three years on the targeted therapy it stopped working for him. He joined an experimental trial for the now-approved second-generation drug Sprycel in 2004 and is now responding well to the third-generation experimental drug ponatinib, being developed by ARIAD Pharmaceuticals of Cambridge, Mass. Now age 62, Mayfield is retired, living in Bloomington, Ill. “I’ve certainly been at the right place at the right time and with a little luck and a little research and a little persistence, I’m still here and I’m still kicking,” he says.
So, it appears that my story will have a happy ending after all.
Wednesday, March 16, 2011
Latest Update
My recent trip to Florida is now just a fond memory. After the marathon in Disney, Ray and I ventured to Clearwater, Tampa (to visit my brother), St. Pete's Beach, Punta Gordo, and then to the Florida Keys. The weather was cool for almost all of January, but greatly improved once February rolled around and we arrived in the Keys. Our month was filled with boating, beaching, kayacking, and biking. It was wonderful to be where it was warm and sunny.
I did have a little incident though a couple of days before we left the Keys. Here is what happened: I had a brief episode (3-5 minutes) where I didn’t know where I was or even where I got the clothes I had on. I contacted my oncologist immediately thinking perhaps I was having an allergic reaction to the oral chemo that I am still taking. Dr. Carraway did not believe that the incident had anything to do with my chemo, but said I must be deligent with my aspirin regiment and if it happened again I should go immediately to the ER. She said she thought I might have had a TIA (aka – a mini stroke). Thankfully, nothing else has happened since.
The day we arrived back in Baltimore (March 4th) I went directly to see my cardiologist. He did an EKG and listened for atrial-fib (irregular heartbeat/rapid heartbeat) thinking that might be the culprit. When your heart beats erratically sometimes it sends off little blood clots. The EKG showed nothing and I was not in a-fib when I was in his office. My blood pressure was perfect, and my blood work (white count, red count, platelets) was perfect except for an elevated MCV and MCH which indicates that I have a B-12 deficiency. He didn’t pick up on it, but my daughter, Stephanie did when I went to her office on Tuesday with the results in hand. The cardiologist talked about the possibility of putting me on a heart monitor, but his feeling is that my heart had nothing to do with the episode. I’m proud to say that my cholesterol was only 137! Not bad for an old broad!
Tuesday I went to my daughter's office - she is a neurologist. She did some basic in-office testing (off the record) to test for balance, reflexes, dexterity, etc. She found some mild dysmetria in my left hand, which in itself doesn't really mean much, but coupled with the memory loss incident it might. She also determined that I have neuropathy in my legs that effects my nerve endings. I was diagnosed some 15 years ago so this is not new. My legs have been bothering me lately so perhaps this is related to the B-12 issue – I’m not sure. When Stephanie noticed the elevated MCV and MCH levels she made me promise to tell my oncologist. I did.
Thursday I went to Hopkins to see Dr. Rivero (my regular oncologist is on maternity leave) for my regular visit and bone marrow biopsy. The BMB was very uncomfortable. For some reason they couldn’t get deep enough this time. I am still sore. My blood counts all look good except I have another urinary tract infection. Dr. Rivero gave me a prescription for that, but also took an additional urine test to determine if there is some kind of different bacteria at play in the urinary tract since these infections are becoming chronic. I also had to have an additional blood test done to re-check my B-12 levels. Dr. Rivero is very concerned about that. Apparently B-12 deficiencies are common among Bone Marrow Transplant patients. It can cause depression, anemia, memory loss, fatigue, etc. I have been complaining since my transplant about cognition (or lack of) and have always blamed it on my “chemo brain”, (and perhaps it was in the beginning), but now I’m learning that memory loss and an inability to retain information can also be related to a B-12 deficiency. Interesting, don’t ya think? By the way, my BMB showed no leukemia cells present! Yeah!
I have had an echo-cardiogram (everything looked good there), and next week I get an electroencephalogram (asleep and awake) – where they will measure my brain waves. Saturday I had an MRI with and without contrast. I am awaiting the results.
So that's where we are. A lot of open ends right now, but I am sure the mystery will soon be solved. All of these tests are instrumental in figuring out what my “episode” was all about. They have to do all these tests to rule out blockages, blood clots, etc. While a B-12 deficiency explains a lot, it doesn't necessarily explain why I had the episode in Florida. I have been referred to a neurologist, someone other than my daughter who doesn't want to take the risk that she might "kill her mother". Hopefully, it will all come together in a few days. I go back to see Dr. Rivero on the 24th but he will call me with test results as he gets them. That all being said, I feel absolutely fine except I am very tired.
I did have a little incident though a couple of days before we left the Keys. Here is what happened: I had a brief episode (3-5 minutes) where I didn’t know where I was or even where I got the clothes I had on. I contacted my oncologist immediately thinking perhaps I was having an allergic reaction to the oral chemo that I am still taking. Dr. Carraway did not believe that the incident had anything to do with my chemo, but said I must be deligent with my aspirin regiment and if it happened again I should go immediately to the ER. She said she thought I might have had a TIA (aka – a mini stroke). Thankfully, nothing else has happened since.
The day we arrived back in Baltimore (March 4th) I went directly to see my cardiologist. He did an EKG and listened for atrial-fib (irregular heartbeat/rapid heartbeat) thinking that might be the culprit. When your heart beats erratically sometimes it sends off little blood clots. The EKG showed nothing and I was not in a-fib when I was in his office. My blood pressure was perfect, and my blood work (white count, red count, platelets) was perfect except for an elevated MCV and MCH which indicates that I have a B-12 deficiency. He didn’t pick up on it, but my daughter, Stephanie did when I went to her office on Tuesday with the results in hand. The cardiologist talked about the possibility of putting me on a heart monitor, but his feeling is that my heart had nothing to do with the episode. I’m proud to say that my cholesterol was only 137! Not bad for an old broad!
Tuesday I went to my daughter's office - she is a neurologist. She did some basic in-office testing (off the record) to test for balance, reflexes, dexterity, etc. She found some mild dysmetria in my left hand, which in itself doesn't really mean much, but coupled with the memory loss incident it might. She also determined that I have neuropathy in my legs that effects my nerve endings. I was diagnosed some 15 years ago so this is not new. My legs have been bothering me lately so perhaps this is related to the B-12 issue – I’m not sure. When Stephanie noticed the elevated MCV and MCH levels she made me promise to tell my oncologist. I did.
Thursday I went to Hopkins to see Dr. Rivero (my regular oncologist is on maternity leave) for my regular visit and bone marrow biopsy. The BMB was very uncomfortable. For some reason they couldn’t get deep enough this time. I am still sore. My blood counts all look good except I have another urinary tract infection. Dr. Rivero gave me a prescription for that, but also took an additional urine test to determine if there is some kind of different bacteria at play in the urinary tract since these infections are becoming chronic. I also had to have an additional blood test done to re-check my B-12 levels. Dr. Rivero is very concerned about that. Apparently B-12 deficiencies are common among Bone Marrow Transplant patients. It can cause depression, anemia, memory loss, fatigue, etc. I have been complaining since my transplant about cognition (or lack of) and have always blamed it on my “chemo brain”, (and perhaps it was in the beginning), but now I’m learning that memory loss and an inability to retain information can also be related to a B-12 deficiency. Interesting, don’t ya think? By the way, my BMB showed no leukemia cells present! Yeah!
I have had an echo-cardiogram (everything looked good there), and next week I get an electroencephalogram (asleep and awake) – where they will measure my brain waves. Saturday I had an MRI with and without contrast. I am awaiting the results.
So that's where we are. A lot of open ends right now, but I am sure the mystery will soon be solved. All of these tests are instrumental in figuring out what my “episode” was all about. They have to do all these tests to rule out blockages, blood clots, etc. While a B-12 deficiency explains a lot, it doesn't necessarily explain why I had the episode in Florida. I have been referred to a neurologist, someone other than my daughter who doesn't want to take the risk that she might "kill her mother". Hopefully, it will all come together in a few days. I go back to see Dr. Rivero on the 24th but he will call me with test results as he gets them. That all being said, I feel absolutely fine except I am very tired.
Friday, January 21, 2011
Disney Marathon Completed
The Disney Marathon was really something. I can't tell you how moving and inspiring it was to be there with my family and to watch Stephanie accomplish such a difficult feat. There were a bunch of marathoners that weekend, all running for their causes -55,000 people in all. The Leukemia Lymphoma Society Team in Training counted in at 1,200 and managed to raise $4 M. What an accomplishment. Stephanie finished in a little under 7 hours. Her feet and muscles were sore for a couple of days, but still she was able to bask in the glory.
I was going to write a big post here about the marathon, but decided instead to include what Stephanie wrote instead. There isn't anything that I could have said that could have topped this. Read on:
Awesome Marathon Weekend
by Stephanie Nuke on Monday, January 10, 2011 at 9:03pm
Thanks for all the good wishes and the support! I wanted to share some details about the marathon and Team in Training for anyone that is interested. And if you aren’t interested, well, it won’t hurt my feelings if you don’t read this note.
Last summer, I signed up to train with Team in Training for a marathon. I did it for many reasons, including the desire to be more active, feeling like I needed a challenge in my life and also because it had been on my “bucket list.” But, the main reason—the big one—was that I wanted to support the Leukemia and Lymphoma Society, which receives the funds raised by Team in Training. My mom was diagnosed with leukemia in 2009 and received a bone marrow transplant in May 2009. At the time of her diagnosis, she was in blast crisis. Without the transplant she would have died. Luckily, her brother was a perfect match and she is now doing very well. It’s amazing that a disease state that was once invariably fatal can now be successfully treated. Stuff like that doesn’t happen without research—both bench research and clinical research. And research doesn’t happen without money. I wanted to support that research.
So, I signed up to raise money for TNT by participating in the Disney marathon. Since August, I’ve been training. I’ve run a lot of miles since August, spent countless hours running in freezing and unpleasant weather, suffered injuries—but managed somehow to keep going. Mostly, because I had so much support from so many people. My husband took on a lot of the child care and housekeeping because I was out running. So many family members and friends encouraged me, cajoled me, and pushed me. The TNT coaches and mentors were FABULOUS in every way and the other runners became friends. And so many people donated to my cause. Thank you, thank you, thank you to all of you for helping me in so many ways! Special thanks to those who opened their check books and for Debi who opened her home for a fundraising party! And to my Aunt Donna who lives in Orlando for making this weekend so much fun and so easy for us!!
OK, so I sometimes overestimate my ability to commit time and energy to projects. And I always have a few too many projects. But somehow, this marathon project seemed totally doable back in August. It even seemed easy in the beginning when the runs were still pretty short. Soon enough, though, the runs got long and hard. And I kept doing it. Four times a week, with a really long run on the weekend. It was hard setting the alarm for 6:00 on a Saturday and going out in the freezing cold to run for hours. ‘Cause when you’re slow like me the runs take a looong time. And when it’s cold, your hair frosts and your nose runs and your muscles seem to cramp more. Training was just something I did. It was something I committed to do and therefore needed to keep doing. And I was a little embarrassed sometimes when people I hardly know asked about it. Because I never did and still don’t feel like a REAL runner. And I guess I just never felt like what I was doing was anything all that special. Until I arrived in Orlando.
I flew in on Thursday with my husband and the kids. Travelling with the kids is often fun, but can be a bit of a hassle. My Aunt Donna picked us up at the airport and drove us to our hotel in Disney. And then we drove over to the sports complex to pick up my packet, including my bib and my D-chip tracker. And I started to get scared because there were all kinds of super fit runners there. And I talked to lots of them and many had done dozens of marathons before and were expecting to finish in no time flat. And there were loads of exhibits and booths set up selling running gear that I had never heard of had never even imagined a need for. So, I got my packet as fast as possible and flew out of there. Quote from Julian as we were leaving, “There is a super freaky running subculture that I never knew about before.” Spent the evening at Epcot, which was less intimidating and also fun for the whole family and lay awake all night freaking out about whether I could actually do this thing.
On Friday, we spent the day at the Magic Kingdom and we had a blast. Then on Friday evening, my perspective changed in a big way. We had the TNT Inspiration dinner on Friday. As the participants were walking in, the TNT coaches, support team, and mentors from all over the country were lining the corridor with noise makers and clappers and horns and they were screaming and clapping for us. It was raucous and wild and wonderful and it started to hit me—hey, maybe this is a big deal. During the dinner, we learned that TNT 2011 Disney participants have raised over $4 million to fight blood cancers, and that TNT has raised $700million since its inception. There are people who are alive today, who wouldn’t be without TNT. And some of them don’t even have a blood cancer—47% of cancer treatments for other types of cancer started out as treatments for leukemia or lymphoma. So, if you know anyone anywhere that has had cancer, you probably know somebody who has been affected by the research funded by LLS. The keynote speaker was a 12 year old leukemia survivor. OK, I had tears in my eyes. I wasn’t the only one. I left that dinner understanding that the marathon was secondary to the real victory. I left there with the understanding that I had already succeeded.
On Saturday, we went to Disney Quest in the afternoon. The kids played while I sat in a very Disneyesque chair in the Wonderland Café and read. Needed to rest the legs before the big event! That evening, we went to Aunt Donna’s for dinner. My Mom and Ray and my sister, Lisa had arrived. Some of Donna’s friends were there to help us celebrate. We spent a great evening eating great food and enjoying great company. Again, an “aha” moment. Not only had my family gone to great effort to come see me do this thing, but even Donna’s friends, whom I had never met before, were genuinely enthused about it. Again, maybe this IS a big deal.
Had to get up a 2:30 AM Sunday morning, meet the team at 3:00 and catch the bus to the starting area. The camaraderie among the team members was fantastic. At about 4:00 we started moving into our corrals. It was sooooo cold in the predawn hours and we were huddling together under mylar blankets to keep warm. I was so happy to have some of my running buddies to hang with during this very anxiety-inducing time. Again, I was feeling intimidated by the “real” runners, some of whom seemed to be doing some very odd stretching routines. But, the awesome thing is that I also saw a huge number of purple TNT shirts. And so I made new friends on the spot, too.
We were in one of the back corrals, so we started about 35 minutes after the first runners. Disney really knows how to put on a show and there were fireworks at the start, along with Mickey, Minnie and Donald. J I started very strong and was feeling pretty good. I have been nursing a case of Achilles tendonitis and I knew that I would not be able to run the entire distance. I had hoped to run about half. I ended up giving that up at mile 10 and switching to run/walk intervals. Around the half way point I knew that I had to walk the rest or risk real injury. I ended up finishing in 6:56, which is dreadfully slow. But, that does include my potty breaks (6 times, and waiting in line each time—and yes, I know I need to manage my hydration better to avoid that if I ever do this again.) I also stopped along the way and got into a couple of group TNT pics, which my friend promised to email to me. I hope she remembers so I can show you! There were Disney characters all along the route, bands, DJ’s and countless performers. Even some weird little goats and furry puffy things were out along the route with their trainers near Animal kingdom. The route started outside Epcot, then went over to Magic Kingdom. We went down Main Street USA and all around the castle. Then we went over to Animal Kingdom and through the park there and then on to Hollywood Studios. Finally we went from the Studios to the boardwalk and entered Epcot at the World Showcase. We went around the World Showcase lake and then on Spaceship Earth. The finish was just outside of Epcot.
The first half seemed pretty easy, but I really started to struggle around mile 18-19. My feet hurt, I had blisters, and my Achilles ached like crazy. I can not say enough good things about the TNT coaches and mentors along the route. So many times during the race when my energy was fading, a coach would run along side me and give me words of encouragement. There were mentors and staff in purple shirts all along the course cheering and clapping. They really want their participants to succeed and offer so much encouragement. I never felt alone. And the other TNT runners and walkers were also wonderful. We cheered for each other, struck up conversations, and urged each other on. It was amazing in every way.
Once I got to mile 20, I knew that I had it, that nothing would stop me from finishing and getting my medal.
As I approached the finish, I saw my family there cheering and I got all choked up. It was great. I was also just so relieved to be done. I was exhausted.
(Note to anyone thinking of doing a marathon—if you’re over 40 and *not* a runner, training for a full marathon in a mere four months might not be the smartest thing ever.)
That evening we had the victory dinner to attend. Of course, I wore my Mickey Medal and so did many others. There was a definite sense of triumph in the air. And I got to share this with my family. Mom and Ray, Donna and Bill, and Lisa were all there along with Julian and the kids. This was just such a touching/ moving thing for my mom and me. When they asked all of the leukemia and lymphoma survivors to step forward, my mom went right on up. There were quite a lot of survivors there. It was so amazing and so wonderful. My mom danced to “I Will Survive” with the other survivors. My kids danced as only young kids can, with utter abandonment and no rhythm whatsoever. We cried, we laughed, and we hugged. And then we laughed and cried and hugged some more. It was a truly special, wonderful thing. One of the best days ever.
I was going to write a big post here about the marathon, but decided instead to include what Stephanie wrote instead. There isn't anything that I could have said that could have topped this. Read on:
Awesome Marathon Weekend
by Stephanie Nuke on Monday, January 10, 2011 at 9:03pm
Thanks for all the good wishes and the support! I wanted to share some details about the marathon and Team in Training for anyone that is interested. And if you aren’t interested, well, it won’t hurt my feelings if you don’t read this note.
Last summer, I signed up to train with Team in Training for a marathon. I did it for many reasons, including the desire to be more active, feeling like I needed a challenge in my life and also because it had been on my “bucket list.” But, the main reason—the big one—was that I wanted to support the Leukemia and Lymphoma Society, which receives the funds raised by Team in Training. My mom was diagnosed with leukemia in 2009 and received a bone marrow transplant in May 2009. At the time of her diagnosis, she was in blast crisis. Without the transplant she would have died. Luckily, her brother was a perfect match and she is now doing very well. It’s amazing that a disease state that was once invariably fatal can now be successfully treated. Stuff like that doesn’t happen without research—both bench research and clinical research. And research doesn’t happen without money. I wanted to support that research.
So, I signed up to raise money for TNT by participating in the Disney marathon. Since August, I’ve been training. I’ve run a lot of miles since August, spent countless hours running in freezing and unpleasant weather, suffered injuries—but managed somehow to keep going. Mostly, because I had so much support from so many people. My husband took on a lot of the child care and housekeeping because I was out running. So many family members and friends encouraged me, cajoled me, and pushed me. The TNT coaches and mentors were FABULOUS in every way and the other runners became friends. And so many people donated to my cause. Thank you, thank you, thank you to all of you for helping me in so many ways! Special thanks to those who opened their check books and for Debi who opened her home for a fundraising party! And to my Aunt Donna who lives in Orlando for making this weekend so much fun and so easy for us!!
OK, so I sometimes overestimate my ability to commit time and energy to projects. And I always have a few too many projects. But somehow, this marathon project seemed totally doable back in August. It even seemed easy in the beginning when the runs were still pretty short. Soon enough, though, the runs got long and hard. And I kept doing it. Four times a week, with a really long run on the weekend. It was hard setting the alarm for 6:00 on a Saturday and going out in the freezing cold to run for hours. ‘Cause when you’re slow like me the runs take a looong time. And when it’s cold, your hair frosts and your nose runs and your muscles seem to cramp more. Training was just something I did. It was something I committed to do and therefore needed to keep doing. And I was a little embarrassed sometimes when people I hardly know asked about it. Because I never did and still don’t feel like a REAL runner. And I guess I just never felt like what I was doing was anything all that special. Until I arrived in Orlando.
I flew in on Thursday with my husband and the kids. Travelling with the kids is often fun, but can be a bit of a hassle. My Aunt Donna picked us up at the airport and drove us to our hotel in Disney. And then we drove over to the sports complex to pick up my packet, including my bib and my D-chip tracker. And I started to get scared because there were all kinds of super fit runners there. And I talked to lots of them and many had done dozens of marathons before and were expecting to finish in no time flat. And there were loads of exhibits and booths set up selling running gear that I had never heard of had never even imagined a need for. So, I got my packet as fast as possible and flew out of there. Quote from Julian as we were leaving, “There is a super freaky running subculture that I never knew about before.” Spent the evening at Epcot, which was less intimidating and also fun for the whole family and lay awake all night freaking out about whether I could actually do this thing.
On Friday, we spent the day at the Magic Kingdom and we had a blast. Then on Friday evening, my perspective changed in a big way. We had the TNT Inspiration dinner on Friday. As the participants were walking in, the TNT coaches, support team, and mentors from all over the country were lining the corridor with noise makers and clappers and horns and they were screaming and clapping for us. It was raucous and wild and wonderful and it started to hit me—hey, maybe this is a big deal. During the dinner, we learned that TNT 2011 Disney participants have raised over $4 million to fight blood cancers, and that TNT has raised $700million since its inception. There are people who are alive today, who wouldn’t be without TNT. And some of them don’t even have a blood cancer—47% of cancer treatments for other types of cancer started out as treatments for leukemia or lymphoma. So, if you know anyone anywhere that has had cancer, you probably know somebody who has been affected by the research funded by LLS. The keynote speaker was a 12 year old leukemia survivor. OK, I had tears in my eyes. I wasn’t the only one. I left that dinner understanding that the marathon was secondary to the real victory. I left there with the understanding that I had already succeeded.
On Saturday, we went to Disney Quest in the afternoon. The kids played while I sat in a very Disneyesque chair in the Wonderland Café and read. Needed to rest the legs before the big event! That evening, we went to Aunt Donna’s for dinner. My Mom and Ray and my sister, Lisa had arrived. Some of Donna’s friends were there to help us celebrate. We spent a great evening eating great food and enjoying great company. Again, an “aha” moment. Not only had my family gone to great effort to come see me do this thing, but even Donna’s friends, whom I had never met before, were genuinely enthused about it. Again, maybe this IS a big deal.
Had to get up a 2:30 AM Sunday morning, meet the team at 3:00 and catch the bus to the starting area. The camaraderie among the team members was fantastic. At about 4:00 we started moving into our corrals. It was sooooo cold in the predawn hours and we were huddling together under mylar blankets to keep warm. I was so happy to have some of my running buddies to hang with during this very anxiety-inducing time. Again, I was feeling intimidated by the “real” runners, some of whom seemed to be doing some very odd stretching routines. But, the awesome thing is that I also saw a huge number of purple TNT shirts. And so I made new friends on the spot, too.
We were in one of the back corrals, so we started about 35 minutes after the first runners. Disney really knows how to put on a show and there were fireworks at the start, along with Mickey, Minnie and Donald. J I started very strong and was feeling pretty good. I have been nursing a case of Achilles tendonitis and I knew that I would not be able to run the entire distance. I had hoped to run about half. I ended up giving that up at mile 10 and switching to run/walk intervals. Around the half way point I knew that I had to walk the rest or risk real injury. I ended up finishing in 6:56, which is dreadfully slow. But, that does include my potty breaks (6 times, and waiting in line each time—and yes, I know I need to manage my hydration better to avoid that if I ever do this again.) I also stopped along the way and got into a couple of group TNT pics, which my friend promised to email to me. I hope she remembers so I can show you! There were Disney characters all along the route, bands, DJ’s and countless performers. Even some weird little goats and furry puffy things were out along the route with their trainers near Animal kingdom. The route started outside Epcot, then went over to Magic Kingdom. We went down Main Street USA and all around the castle. Then we went over to Animal Kingdom and through the park there and then on to Hollywood Studios. Finally we went from the Studios to the boardwalk and entered Epcot at the World Showcase. We went around the World Showcase lake and then on Spaceship Earth. The finish was just outside of Epcot.
The first half seemed pretty easy, but I really started to struggle around mile 18-19. My feet hurt, I had blisters, and my Achilles ached like crazy. I can not say enough good things about the TNT coaches and mentors along the route. So many times during the race when my energy was fading, a coach would run along side me and give me words of encouragement. There were mentors and staff in purple shirts all along the course cheering and clapping. They really want their participants to succeed and offer so much encouragement. I never felt alone. And the other TNT runners and walkers were also wonderful. We cheered for each other, struck up conversations, and urged each other on. It was amazing in every way.
Once I got to mile 20, I knew that I had it, that nothing would stop me from finishing and getting my medal.
As I approached the finish, I saw my family there cheering and I got all choked up. It was great. I was also just so relieved to be done. I was exhausted.
(Note to anyone thinking of doing a marathon—if you’re over 40 and *not* a runner, training for a full marathon in a mere four months might not be the smartest thing ever.)
That evening we had the victory dinner to attend. Of course, I wore my Mickey Medal and so did many others. There was a definite sense of triumph in the air. And I got to share this with my family. Mom and Ray, Donna and Bill, and Lisa were all there along with Julian and the kids. This was just such a touching/ moving thing for my mom and me. When they asked all of the leukemia and lymphoma survivors to step forward, my mom went right on up. There were quite a lot of survivors there. It was so amazing and so wonderful. My mom danced to “I Will Survive” with the other survivors. My kids danced as only young kids can, with utter abandonment and no rhythm whatsoever. We cried, we laughed, and we hugged. And then we laughed and cried and hugged some more. It was a truly special, wonderful thing. One of the best days ever.
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