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As most of you know, my daughter Stephanie will be participating in the Walt Disney World Leukemia Lymphoma Society Marathon on January 9th in Orlando, Fl. More than 1,300 runners and race walkers are currently training as members of the Team In Training in preparation for the event. Since TNT first became involved with this exciting event, with a course that brings participants through Epcot Center, the Magic Kingdom and other fabulous Disney destination spots, nearly 24,000 participants have taken part. Over that time they have raised more than $65.5 million to support cancer research and patient services, while realizing their dream of accomplishing a major endurance event.
TNT has prepared more than 440,000 participants for marathons, half marathons, 100-mile bike rides, triathlons and hike adventures since its inception in 1988. In return for the great coaching and supportive team environment, those participants have raised more than $1 billion to support blood cancer research and patient services.
Fortunately, Ray and I will be able to attend the marathon. Steph's sister, Lisa will be flying in, and my sister Donna, and her husband Bill will also be on hand to support Stephanie. I will be adding pictures and blog posts about the event.
To learn more about Team In Training, please visit www.teamintraining.org.
Wednesday, December 29, 2010
Sunday, November 7, 2010
Bone Marrow Biopsy Results
I'm happy to report that the results from my most recent bone marrow biopsy (taken on October 28th) are in and everything looks great! My oncologist e-mailed to let me know and added the word EXCELLENT (bolded and in all caps) as a side note. Guess that is about as good as it gets. As always I am incredibly relieved. My next bone marrow biopsy is scheduled for March 10, 2011. I have no reason to think that the results are going to be any less than EXCELLENT, but I always worry until I receive the news. Now I can breathe easy again until after the new year.
I have been having some GI problems though. Stomach pain, cramping, bloating, and all the unmentionables that go hand-in-hand with those symptoms. I had a endoscopy and colonoscopy last week, and was told that there is no sign of acid reflux or celiac (an auto-immune disease that runs in my family), yet I continue to suffer with discomfort. Dr. Michael Cox is my GI doc, and has started me on Align, a pro-biotic, Benefiber, and something called Complete Relief that I have been unable to find anywhere. I was using Prilosec, but Dr. Cox told me that long-time users often experience the same symptoms that I have been complaining about, so I discontinued using it. I hope this situation gets better, because I'm often woken up by the symptoms. I have a follow-up appointment with Dr. Cox on December 1st. Dr. Carraway, my oncologist, seems concerned because the symptoms could also be a side effect of the Gleevec. That is a scenario that I don't even want to broach even though there are alternative chemos. I feel like Gleevec is my friend and has worked so well for me that I am afraid to try another medication.
This is the kind of thing that I probably will have to face for the rest of my life as a result of my illness, as a result of the chemo I received prior to my bone marrow transplant, and as a result of taking a daily chemo pill. In the scheme of things I suppose I shouldn't whine, but it worries me nevertheless.
I have been having some GI problems though. Stomach pain, cramping, bloating, and all the unmentionables that go hand-in-hand with those symptoms. I had a endoscopy and colonoscopy last week, and was told that there is no sign of acid reflux or celiac (an auto-immune disease that runs in my family), yet I continue to suffer with discomfort. Dr. Michael Cox is my GI doc, and has started me on Align, a pro-biotic, Benefiber, and something called Complete Relief that I have been unable to find anywhere. I was using Prilosec, but Dr. Cox told me that long-time users often experience the same symptoms that I have been complaining about, so I discontinued using it. I hope this situation gets better, because I'm often woken up by the symptoms. I have a follow-up appointment with Dr. Cox on December 1st. Dr. Carraway, my oncologist, seems concerned because the symptoms could also be a side effect of the Gleevec. That is a scenario that I don't even want to broach even though there are alternative chemos. I feel like Gleevec is my friend and has worked so well for me that I am afraid to try another medication.
This is the kind of thing that I probably will have to face for the rest of my life as a result of my illness, as a result of the chemo I received prior to my bone marrow transplant, and as a result of taking a daily chemo pill. In the scheme of things I suppose I shouldn't whine, but it worries me nevertheless.
Monday, October 11, 2010
Interesting Article
I came across this article by David Wight in The Costco Connection. Each month they feature an illness on their Health Calendar. I thought it was interesting so therefore decided to include it here. I am typing this verbatim.
Leukemia & Lymphoma Awareness Month
The Leukemia & Lymphoma Society reports that more than 900,000 people in the U.S. currently have some form of blood cancer, and more than 53,000 will die from one this year.
That's the bad news. The good news is that improved thereapies and stem cell transplantation have dramactically increased survival rates for most blood cancers.
Leukemia and lymphoma are two forms of blood cancer. In both diseases, while blood cells, normall the infeaction fighters, fail to function properly and start to grow at an abnormal rate.
Leukemia starts in the bone marrow, where blood cells are made, and the cancer cells spread to the blood that circulates through the body in the arteries and veins.
Lymphoma starts in the lymphatic system, which draims waste-collecting lymph from body tissue. Lymphoma may develop in many parts of the body, including the lymph nodes, spleen, bone marrow and blood.
Sometimes there are no warning symptoms or signs of leukemia or lymphoma, or the signs and symptoms will be similar to those more common and less severe illnesses.
The best advice for any person troubled by symptoms such as night sweats, swollen lymph nodes, unexplained weight loss, tiredness or shortness of breath is to see a healthcare provider.
For information about blood cancer and way in which you can help, the Leukemia & Lymphoma Society provides deep resources at www.lls.org.
Leukemia & Lymphoma Awareness Month
The Leukemia & Lymphoma Society reports that more than 900,000 people in the U.S. currently have some form of blood cancer, and more than 53,000 will die from one this year.
That's the bad news. The good news is that improved thereapies and stem cell transplantation have dramactically increased survival rates for most blood cancers.
Leukemia and lymphoma are two forms of blood cancer. In both diseases, while blood cells, normall the infeaction fighters, fail to function properly and start to grow at an abnormal rate.
Leukemia starts in the bone marrow, where blood cells are made, and the cancer cells spread to the blood that circulates through the body in the arteries and veins.
Lymphoma starts in the lymphatic system, which draims waste-collecting lymph from body tissue. Lymphoma may develop in many parts of the body, including the lymph nodes, spleen, bone marrow and blood.
Sometimes there are no warning symptoms or signs of leukemia or lymphoma, or the signs and symptoms will be similar to those more common and less severe illnesses.
The best advice for any person troubled by symptoms such as night sweats, swollen lymph nodes, unexplained weight loss, tiredness or shortness of breath is to see a healthcare provider.
For information about blood cancer and way in which you can help, the Leukemia & Lymphoma Society provides deep resources at www.lls.org.
Thursday, September 16, 2010
As Summer Comes to an End
Well, there's not much going on right now in regard to doctor appointments, etc. What is going on is that I had a wonderful and full summer that included a trip to Ocean City (yeah, I para-sailed), many splendid nights spent on the boat, and some good visits with my grandchildren.
I try to exercise everyday and am eating well. I have gained back some weight, but that is probably a good thing since I was looking pretty gaunt there for awhile. Currently I'm enrolled in Graduate School at Towson University and am taking an on-campus class called the Eloquence of Rhetoric. I took a very enjoyable on-line poetry class over the summer so commuting to campus takes some effort. The poetry class was a lot of fun, but the Rhetoric class on the other hand, is quite difficult. I tend to be forgetful and don't easily grasp new concepts without a lot of reading or discussing. Since of course I need something else to worry about, I wonder if some of that doesn't stem from "chemo brain"!
Although I feel pretty good most of the time, I readily admit that my pace has slowed considerably. I certainly can't do what I used to do before I got sick. So, house and yard work suffer, my cognition is impaired, and I'm certainly not the "party girl" I used to be. I still require 8 - 10 hours of sleep a night and occasionally feel nauseous. But, it beats the alternative so I don't really care. I am grateful for what I have and don't push myself to do anymore than I really want to do.
I have been doing some volunteer work at Hopkins recently. My first two sessions entailed sitting with 5 or 6 first year medical students and their preceptor and telling them about my journey with leukemia. It was very gratifying and with the one group particularly, I felt a real kinship on a very emotional level. The second part of my volunteer work involved me doing a little acting - I told my story just as I told my doctor how I was feeling back in January of 2008. Now it's not the student's job to diagnose, it's their job to learn how to take medical histories and to ask the "next" questions. They all did remarkably well considering it was only their 2nd week of medical school. They are all so bright and eager - too cute.
So, that is my update as of now. Yes, I still worry about a relapse, and yes, I still worry about the effects of Gleevec on my organs, and yes, I'm still taking it all in. I look at myself sometimes and gasp at how I've aged. Maybe it's just me being critical of me (like all women do) and don't get me wrong, in the scheme of things it doesn't matter at all, but it's amazing what cancer and chemo can do to a girl! It takes a while to absorb.
I try to exercise everyday and am eating well. I have gained back some weight, but that is probably a good thing since I was looking pretty gaunt there for awhile. Currently I'm enrolled in Graduate School at Towson University and am taking an on-campus class called the Eloquence of Rhetoric. I took a very enjoyable on-line poetry class over the summer so commuting to campus takes some effort. The poetry class was a lot of fun, but the Rhetoric class on the other hand, is quite difficult. I tend to be forgetful and don't easily grasp new concepts without a lot of reading or discussing. Since of course I need something else to worry about, I wonder if some of that doesn't stem from "chemo brain"!
Although I feel pretty good most of the time, I readily admit that my pace has slowed considerably. I certainly can't do what I used to do before I got sick. So, house and yard work suffer, my cognition is impaired, and I'm certainly not the "party girl" I used to be. I still require 8 - 10 hours of sleep a night and occasionally feel nauseous. But, it beats the alternative so I don't really care. I am grateful for what I have and don't push myself to do anymore than I really want to do.
I have been doing some volunteer work at Hopkins recently. My first two sessions entailed sitting with 5 or 6 first year medical students and their preceptor and telling them about my journey with leukemia. It was very gratifying and with the one group particularly, I felt a real kinship on a very emotional level. The second part of my volunteer work involved me doing a little acting - I told my story just as I told my doctor how I was feeling back in January of 2008. Now it's not the student's job to diagnose, it's their job to learn how to take medical histories and to ask the "next" questions. They all did remarkably well considering it was only their 2nd week of medical school. They are all so bright and eager - too cute.
So, that is my update as of now. Yes, I still worry about a relapse, and yes, I still worry about the effects of Gleevec on my organs, and yes, I'm still taking it all in. I look at myself sometimes and gasp at how I've aged. Maybe it's just me being critical of me (like all women do) and don't get me wrong, in the scheme of things it doesn't matter at all, but it's amazing what cancer and chemo can do to a girl! It takes a while to absorb.
Friday, August 13, 2010
Visit with Oncologist
Yesterday I had an appointment with my oncologist and I am happy to report that all things continue to look up. My blood work indicates that my white, red and platelet counts are normal and my liver and kidney functions are good. With the exception of some minor aches and pains (old age I fear), I am good to go! While there I received my boost shots for polio, tetanus, diphtheria, hepatitis B and Hib Vaccine. No more immunizations until May 2011 when I'll be able to receive live vaccines like chicken pox and measles. My next bone marrow biopsy is scheduled for October 28th. I am wondering how many of those I've had since this whole thing started - I think the number is somewhere around 8-10.
While I am feeling well physically, I continue to struggle with some cognition problems. Frustrating to say the least, but in all fairness, it's not the end of the world. Don't get me wrong, I'm not leaving the stove on or anything, but I often forget parts of conversations, items from the grocery store, etc. Perhaps it has something to do with my age - no one can really say. So my remedy - write everything down. Simple!
Ray and I had a wonderful vacation in Ocean City recently. Quite a few family members, including Brad, were able to make it for a visit so it was truly a special time for me. Check out the new picture of me and my siblings. I also went parasailing one day - a bucket list item for me for quite some time.
While I am feeling well physically, I continue to struggle with some cognition problems. Frustrating to say the least, but in all fairness, it's not the end of the world. Don't get me wrong, I'm not leaving the stove on or anything, but I often forget parts of conversations, items from the grocery store, etc. Perhaps it has something to do with my age - no one can really say. So my remedy - write everything down. Simple!
Ray and I had a wonderful vacation in Ocean City recently. Quite a few family members, including Brad, were able to make it for a visit so it was truly a special time for me. Check out the new picture of me and my siblings. I also went parasailing one day - a bucket list item for me for quite some time.
Wednesday, July 28, 2010
Team In Training
I am very proud to tell you that my daughter, Stephanie is raising money and awareness by running in the Leukemia and Lymphoma Society's Team in Training Marathon that will take place in Orlando, Florida in January. There is lots of information about the event and her participation it it at http://pages.teamintraining.org/md/wdw11/nstephanie Her committment is $3500.00 so if you happen to have a couple of dollars laying around that you don't need........well, just sayin'.
Stephanie has honored me by running this marathon in my name. I am touched to the point of spontaneous combustion and would love to see her achieve her goal. She has never run a marathon before so while this is a little out of her comfort zone, I say "Kudos" for stepping out and trying something new. I'm not sure I would be so brave.
As far as I am concerned - well, I am doing just fine. I have had a glorious summer thus far and have really taken the time to savor every moment. I have times when I get one of those scary reality checks, and I know that complications may come my way some day, but right now I just try to make each day count. I am so very blessed.
Stephanie has honored me by running this marathon in my name. I am touched to the point of spontaneous combustion and would love to see her achieve her goal. She has never run a marathon before so while this is a little out of her comfort zone, I say "Kudos" for stepping out and trying something new. I'm not sure I would be so brave.
As far as I am concerned - well, I am doing just fine. I have had a glorious summer thus far and have really taken the time to savor every moment. I have times when I get one of those scary reality checks, and I know that complications may come my way some day, but right now I just try to make each day count. I am so very blessed.
Wednesday, July 7, 2010
Happy Birthday To Me!
I just celebrated my 61st birthday on July 3rd and never thought I'd feel so happy to be growing older! Needless to say, I spent a lot of time reflecting on the past two years and all that I've been through. I'm grateful that it's behind me (hopefully forever) and thankful that I am now living a healthy and happy life doing all the things that bring me joy and fill my spirit with positive thoughts.
Thank you for your continued support and well-wishes and thanks for the birthday shout-outs too! Love to you all.
Thank you for your continued support and well-wishes and thanks for the birthday shout-outs too! Love to you all.
Wednesday, June 9, 2010
How Things Are Going
I had another visit to the oncologist since my last posting at which I had a bone marrow biopsy, extensive blood work and shots (immunizations).
My bone marrow biopsy showed that there are still no leukemia cells present - good news, for sure. I was at the dental school when the call came in from Dr. Carraway. I wouldn't normally answer a call while there, but just couldn't resist when I saw who it was that was calling. Surprisingly, after receiving the good news I had a complete melt-down. I was so unaware of how much tension I was holding in anticipation. After several moments of thanking God and proclaiming to the Universe how very grateful I am, I managed to compose myself and had proceeded to have my teeth cleaned! I don't think poor Lauren, my dental student, knew quite what to do, but, gosh, what a relief. I won't have to have another bone marrow biopsy for 5 whole months.
On the same day as my biopsy, I had extensive blood work done which included the usual stuff - white counts, red counts, neutrophils, potassium, liver and kidney function, etc., But, this time I was also checked for cholesterol, thyroid, and Vitamin D deficiency. I'm proud to say that my cholesterol is only 120. The rest I am unsure about at this writing. I had a bone density scan done and will find out the results soon.
On the same day I had 5 immunizations - pneumococcal polysaccharide vaccine, hepatitis B, haemophilus influenzae type B (Hib) vaccine, tetanus and diphtheria, and the polio vaccine. In two months I'll get their boosters. Then, no more shots until this time next year when (if I recall correctly) I'll get mumps, measles and rubella. They are live vaccines and apparently my system can't handle a live vaccine just yet.
So that's where I am at this point. Healthy and happy and full of hope for the future.
Thanks again for your support and good thoughts and prayers. Keep 'em coming.
My bone marrow biopsy showed that there are still no leukemia cells present - good news, for sure. I was at the dental school when the call came in from Dr. Carraway. I wouldn't normally answer a call while there, but just couldn't resist when I saw who it was that was calling. Surprisingly, after receiving the good news I had a complete melt-down. I was so unaware of how much tension I was holding in anticipation. After several moments of thanking God and proclaiming to the Universe how very grateful I am, I managed to compose myself and had proceeded to have my teeth cleaned! I don't think poor Lauren, my dental student, knew quite what to do, but, gosh, what a relief. I won't have to have another bone marrow biopsy for 5 whole months.
On the same day as my biopsy, I had extensive blood work done which included the usual stuff - white counts, red counts, neutrophils, potassium, liver and kidney function, etc., But, this time I was also checked for cholesterol, thyroid, and Vitamin D deficiency. I'm proud to say that my cholesterol is only 120. The rest I am unsure about at this writing. I had a bone density scan done and will find out the results soon.
On the same day I had 5 immunizations - pneumococcal polysaccharide vaccine, hepatitis B, haemophilus influenzae type B (Hib) vaccine, tetanus and diphtheria, and the polio vaccine. In two months I'll get their boosters. Then, no more shots until this time next year when (if I recall correctly) I'll get mumps, measles and rubella. They are live vaccines and apparently my system can't handle a live vaccine just yet.
So that's where I am at this point. Healthy and happy and full of hope for the future.
Thanks again for your support and good thoughts and prayers. Keep 'em coming.
Wednesday, May 26, 2010
One-year Anniversary
Today marks my one-year bone marrow transplant anniversary! As I reflect on what was happening this time last year I am amazed at just how far I've actually come. It hasn't been easy, but it's been profound, extending far beneath the surface.
As you might guess, today is a day of reflection and thanks. Please bear with me while I ruminate. I'm grateful that I was eligible for a transplant and I'm grateful that Brad was able to be my donor. I'm grateful that I have a bright future ahead of me and I promise to honor that by being a good person and working to help others. I am thankful for the support of my family and friends. Their prayers and good wishes kept me going when things were at their bleakest. I'm thankful for the doctors and nurses who took such good care of me then and continue to do so now. I am grateful for all that I have and all that I have to look forward to. I am thankful that I can still have hopes and dreams. I am grateful for every sunrise and sunset and all the hours in between. I am grateful for my mind and it's capacity to sense and understand. I could go on and on, but just let it be said, I am grateful!
My journey with leukemia has been eye-opening as you might imagine. I've learned a lot and I've asked a lot of questions, not only about my disease, but about life, death, faith, hope, friendship, love - all the biggies! I'm now equipped to continue my journey with new knowledge and insight. Nothing can break my stride!
It is my intention to update this blog as I have things to report or feel the urge to reflect. There are still so many who tell me they check in from time-to-time. Thanks for that. Thanks too for your love and support through good times and bad. I really, really appreciate it. I couldn't have made it without you. I am blessed and I know it. Thank you, thank you, thank you.
P.S. Don't forget - June is cancer awareness month!
As you might guess, today is a day of reflection and thanks. Please bear with me while I ruminate. I'm grateful that I was eligible for a transplant and I'm grateful that Brad was able to be my donor. I'm grateful that I have a bright future ahead of me and I promise to honor that by being a good person and working to help others. I am thankful for the support of my family and friends. Their prayers and good wishes kept me going when things were at their bleakest. I'm thankful for the doctors and nurses who took such good care of me then and continue to do so now. I am grateful for all that I have and all that I have to look forward to. I am thankful that I can still have hopes and dreams. I am grateful for every sunrise and sunset and all the hours in between. I am grateful for my mind and it's capacity to sense and understand. I could go on and on, but just let it be said, I am grateful!
My journey with leukemia has been eye-opening as you might imagine. I've learned a lot and I've asked a lot of questions, not only about my disease, but about life, death, faith, hope, friendship, love - all the biggies! I'm now equipped to continue my journey with new knowledge and insight. Nothing can break my stride!
It is my intention to update this blog as I have things to report or feel the urge to reflect. There are still so many who tell me they check in from time-to-time. Thanks for that. Thanks too for your love and support through good times and bad. I really, really appreciate it. I couldn't have made it without you. I am blessed and I know it. Thank you, thank you, thank you.
P.S. Don't forget - June is cancer awareness month!
Monday, April 26, 2010
Most Recent Oncology Appointment
Last Thursday I had an appointment with my oncologist, Dr. Carraway. My white blood counts and neutrophils were a little low, but she assured me that they were not low enough to worry about. They will be watched, but are likely a side effect of my medications.
After thinking I was completely done with bone marrow biopsies, I found out that I have to continue them well into 2011. Guess that was wishful thinking on my part. So on June 3rd I will get a bone marrow biopsy, blood work to test for hyperthyroidism, liver and kidney function, various viruses (including CMV) and a bunch of other stuff. Since the one-year anniversary of my bone marrow biopsy is May 26th (yes, it will be a year!) I also have to get 6 shots - my childhood immunizations. Then in August I will get the boosters. In the next year it looks like I will be getting 2-4 bone marrow biopsies - although I am doing so well that my doc is going to re-think that. Let's keep our fingers crossed.
The last few weeks have been pretty amazing for me. Slowly, very slowly, I have begun to feel a strong sense of clarity . I live in the moment now instead of always worrying about tomorrow, I am truly enjoying the very moment that I am living. For that reason I feel completely in control of my life again and that's a very uplifting and powerful feeling. If you've never lost your way or had to completely depend on others, you may not understand what I'm trying to say. For well over a year I have relied completely on my doctors, my family and my friends for just about everything. Now I have choices and I'm capable of making them - that's quite freeing! Along with that new-found clarity, I feel proud of the way I handled myself throughout my illness and treatment and I'm proud of the progress I've made. I believe a positive attitude is 90% of the battle. So, here's to life - I'm back - better, stronger, prouder, more confident, happier and freer ~ God Bless me!
After thinking I was completely done with bone marrow biopsies, I found out that I have to continue them well into 2011. Guess that was wishful thinking on my part. So on June 3rd I will get a bone marrow biopsy, blood work to test for hyperthyroidism, liver and kidney function, various viruses (including CMV) and a bunch of other stuff. Since the one-year anniversary of my bone marrow biopsy is May 26th (yes, it will be a year!) I also have to get 6 shots - my childhood immunizations. Then in August I will get the boosters. In the next year it looks like I will be getting 2-4 bone marrow biopsies - although I am doing so well that my doc is going to re-think that. Let's keep our fingers crossed.
The last few weeks have been pretty amazing for me. Slowly, very slowly, I have begun to feel a strong sense of clarity . I live in the moment now instead of always worrying about tomorrow, I am truly enjoying the very moment that I am living. For that reason I feel completely in control of my life again and that's a very uplifting and powerful feeling. If you've never lost your way or had to completely depend on others, you may not understand what I'm trying to say. For well over a year I have relied completely on my doctors, my family and my friends for just about everything. Now I have choices and I'm capable of making them - that's quite freeing! Along with that new-found clarity, I feel proud of the way I handled myself throughout my illness and treatment and I'm proud of the progress I've made. I believe a positive attitude is 90% of the battle. So, here's to life - I'm back - better, stronger, prouder, more confident, happier and freer ~ God Bless me!
Sunday, April 11, 2010
Easter Weekend
Our Easter weekend started off with a wedding on Saturday at the Antrim in Taneytown. The bride and groom looked stunning and the weather couldn't have been better.
On Easter the family gathered at my niece's house. Brad happened to be in town on other business so he was able to come as well. He looks healthy and happy and was glad to see that I am doing so well. The food was wonderful, but of course I awoke during the night with stomach problems. My body is just not used to all that rich food two days in a row. I figure it's probably the onslaught of fat that gives me the problem. My body just can't handle it these days. It's funny how my relationship with food has changed since my diagnosis. Before I ate when I was happy, sad, mad, upset, etc., etc. Now I eat only to nourish myself. Nothing tastes particularly good anymore and I'm always leery about what is going to send me running to the bathroom.
I haven't been to see my oncologist since March, but am scheduled for the 22nd of April. I have already started composing my list of questions. My sinuses have been giving me a fit and I am basically living on Claridon D. I think my sinus infection has cleared up after a 14-day round of antibiotics, but the pollen and my post nasal drip are are really wearing me down. I am still suffering with insomnia - too much to think about I suppose.
I recently learned a startling bit of information while exploring the Norvartis website. They are the company that manufactures Gleevec. Last March when I was diagnosed, I was in what is referred to as the "blast-crisis stage". While I knew my situation was grave I just realized how very grave it was. The blast-crisis stage is also referred to as the "terminal stage". I'm not sure now what I was thinking at the time, but I can assure you, I was not thinking about dying. All I could do was drop my head in my hands and take a few minutes to steady myself - it took a while to absorb it all. I am truly just now realizing how very sick I was and believe me, it's very, very scary and very humbling at the same time. I am one lucky girl!
On Easter the family gathered at my niece's house. Brad happened to be in town on other business so he was able to come as well. He looks healthy and happy and was glad to see that I am doing so well. The food was wonderful, but of course I awoke during the night with stomach problems. My body is just not used to all that rich food two days in a row. I figure it's probably the onslaught of fat that gives me the problem. My body just can't handle it these days. It's funny how my relationship with food has changed since my diagnosis. Before I ate when I was happy, sad, mad, upset, etc., etc. Now I eat only to nourish myself. Nothing tastes particularly good anymore and I'm always leery about what is going to send me running to the bathroom.
I haven't been to see my oncologist since March, but am scheduled for the 22nd of April. I have already started composing my list of questions. My sinuses have been giving me a fit and I am basically living on Claridon D. I think my sinus infection has cleared up after a 14-day round of antibiotics, but the pollen and my post nasal drip are are really wearing me down. I am still suffering with insomnia - too much to think about I suppose.
I recently learned a startling bit of information while exploring the Norvartis website. They are the company that manufactures Gleevec. Last March when I was diagnosed, I was in what is referred to as the "blast-crisis stage". While I knew my situation was grave I just realized how very grave it was. The blast-crisis stage is also referred to as the "terminal stage". I'm not sure now what I was thinking at the time, but I can assure you, I was not thinking about dying. All I could do was drop my head in my hands and take a few minutes to steady myself - it took a while to absorb it all. I am truly just now realizing how very sick I was and believe me, it's very, very scary and very humbling at the same time. I am one lucky girl!
Friday, March 19, 2010
Bone Marrow Biopsy Results
The results from my recent bone marrow biopsy are in and I'm pleased to report that all things look good. Hopefully, this will be my last biopsy ever (I hope) - not the most pleasant experience! Next month I have an appointment with Dr. Joanna Bock, an internist who will become my primary care physician, although I will continue to see Dr. Carraway a couple of times per year - at least for a while. I have also set up an appointment with a new gynogologist, Dr. Catherine Sewell. I made the decision to go with all Hopkins doctors so that my records are easily accessible by all. At the end of May I will be re-vaccinated with all of the childhood immunizations since the antibodies from those vaccines were lost when my immune system was destroyed prior to my bone marrow transplant. While my hair continues to grow back and my skin color is evening out, it's clear that my body still has some work to do.
I was very surprised to learn recently that while CML is one of the four most common types of leukemia and is responsible for 15% of all adult cases of leukemia, it is still considered a rare form of cancer affecting only 1 to 2 cases per 100,000 people per year worldwide. In the United States an estimated 4,830 people are diagnosed with CML each year. The median age for a CML diagnosis is 67 years and is more prevalent among males. I don't know how I came to be so special, but it's interesting stuff don't ya think?
I continue to take Gleevec every day as well as an anti-nausea pill, but am completely off my atrial fib medications. Seems that I no longer need them. My oncologist thinks that perhaps my rapid and irregular heart beat was likely due to the stress that my body was under for such a long period of time before I was diagnosed. I still take Mepron, a powerful antibiotic, and will continue to take it through May.
So, it seems that life is returning to normal. While I still get worn out quickly, my stamina is increasing weekly. I continue to attend my cancer support group every week as well as a Mindfulness Meditation class - both offered at Hopewell Cancer Support Center. A wonderful place indeed.
The warm weather has brought a new-found energy that I've unleashed on my backyard. What a relief after so long to be able to get out there and get things cleaned up. I can't wait to pot some plants, pull some weeds, and sweep up debris - all tasks that used to be on my restricted list. I'm happy taking little steps!
I was very surprised to learn recently that while CML is one of the four most common types of leukemia and is responsible for 15% of all adult cases of leukemia, it is still considered a rare form of cancer affecting only 1 to 2 cases per 100,000 people per year worldwide. In the United States an estimated 4,830 people are diagnosed with CML each year. The median age for a CML diagnosis is 67 years and is more prevalent among males. I don't know how I came to be so special, but it's interesting stuff don't ya think?
I continue to take Gleevec every day as well as an anti-nausea pill, but am completely off my atrial fib medications. Seems that I no longer need them. My oncologist thinks that perhaps my rapid and irregular heart beat was likely due to the stress that my body was under for such a long period of time before I was diagnosed. I still take Mepron, a powerful antibiotic, and will continue to take it through May.
So, it seems that life is returning to normal. While I still get worn out quickly, my stamina is increasing weekly. I continue to attend my cancer support group every week as well as a Mindfulness Meditation class - both offered at Hopewell Cancer Support Center. A wonderful place indeed.
The warm weather has brought a new-found energy that I've unleashed on my backyard. What a relief after so long to be able to get out there and get things cleaned up. I can't wait to pot some plants, pull some weeds, and sweep up debris - all tasks that used to be on my restricted list. I'm happy taking little steps!
Thursday, March 11, 2010
One Year Ago Today!
It is one year ago today that I was diagnosed with leukemia. Many of you remembered and I thank you for that. Now, I guess I can honestly say that I am a one-year cancer survivor. My next goal is May 26th when I can say that I am a one-year bone marrow transplant survivor.
Yesterday I went for a bone marrow biopsy (ouch), some blood work, and an appointment with Dr. Carraway. She is so wonderful - I can't believe my luck in getting her when I was admitted to JHH 12 months ago. She is patient and kind, caring and understanding, and smart to boot!
While I don't have the results from the biopsy, I do have the results of my blood work and everything looks fantastic. Good, good news since I went to this appointment a little down in the dumps and very anxious. Dr. Carraway talked with me at length about my fears and apprehensions, and let me know that what I am feeling has been felt by countless others - it's all perfectly normal. She also reminded me of what my body has been through, that I shouldn't expect more from myself than what I am able to do right now. I didn't know this before today, but the chemo that I was given prior to my bone marrow transplant is considered one of the harshest chemo regiments imaginable and what my body has gone through with the chemo and the bone marrow transplant is one of the most difficult. No wonder I'm still reeling from the effects, even after all these months. Why did I think I was supposed to be doing more and feeling more energetic? Perhaps a little self-imposed pressure, perhaps some unrealistic thinking, or maybe just some old-fashioned foolishness. Who knows! The point is I'm OK and I need to remember to not expect miracles. This is a long, long road and one that takes self-forgiveness, patience, and the ability to cut myself a little slack!
Yesterday I went for a bone marrow biopsy (ouch), some blood work, and an appointment with Dr. Carraway. She is so wonderful - I can't believe my luck in getting her when I was admitted to JHH 12 months ago. She is patient and kind, caring and understanding, and smart to boot!
While I don't have the results from the biopsy, I do have the results of my blood work and everything looks fantastic. Good, good news since I went to this appointment a little down in the dumps and very anxious. Dr. Carraway talked with me at length about my fears and apprehensions, and let me know that what I am feeling has been felt by countless others - it's all perfectly normal. She also reminded me of what my body has been through, that I shouldn't expect more from myself than what I am able to do right now. I didn't know this before today, but the chemo that I was given prior to my bone marrow transplant is considered one of the harshest chemo regiments imaginable and what my body has gone through with the chemo and the bone marrow transplant is one of the most difficult. No wonder I'm still reeling from the effects, even after all these months. Why did I think I was supposed to be doing more and feeling more energetic? Perhaps a little self-imposed pressure, perhaps some unrealistic thinking, or maybe just some old-fashioned foolishness. Who knows! The point is I'm OK and I need to remember to not expect miracles. This is a long, long road and one that takes self-forgiveness, patience, and the ability to cut myself a little slack!
Thursday, March 4, 2010
Home Again, Home Again
I'm home from our extended stay in Florida. I think the warm temperatures and blue skies did me a world of good. I gained a few needed pounds and have good color. My hair is growing and is quite thick and curly. My appetite is picking up but I've found I can't eat a lot at one sitting or very rich foods. I feel physically stronger. All in all I'm doing quite well, but as it is with any illness, I'm back to the business of doctor's appointments and vigilance in regard to my health and well-being.
On March 11th I'm scheduled for my 3-month bone marrow biopsy. I'll have another in May and if all is as it should be, I imagine I'll only be scheduled every 6 months. I can hardly believe that March 13th marks my one year diagnosis anniversary. Although it's certainly not something to celebrate, I feel I've learned so many worthwhile life-lessons these past months that I'm not sure I would choose to go back to life before cancer. Strange but true!
On March 11th I'm scheduled for my 3-month bone marrow biopsy. I'll have another in May and if all is as it should be, I imagine I'll only be scheduled every 6 months. I can hardly believe that March 13th marks my one year diagnosis anniversary. Although it's certainly not something to celebrate, I feel I've learned so many worthwhile life-lessons these past months that I'm not sure I would choose to go back to life before cancer. Strange but true!
Monday, February 22, 2010
February 2010
Since I got such a clean bill of health at my last doctor's appointment in January, Ray and I were able to get away for our annual trek to the Florida Keys. We left Baltimore on Jan. 15th - two days later than we planned because I had not fully recovered from my last bout of brochitis and just didn't have time to get everything done. Our first stop was Belhaven, NC to stay with friends. From there we stayed near Savannah, GA one night and then Clearwater, Fl for 2 nights. The weather was hideous, but I heard it was much better than what Baltimore had to offer.
After we left Clearwater we went to Tampa to visit Brad and his wife for a few days. We enjoyed our visit very much and I was oh, so glad to see my brother again. From Tampa we went to Punta Gordo to see some long-time friends for three days. In an effort to find warmer weather we took off for the keys and stayed at a cute little resort for 3 days in Islamarado. On Jan. 29th we were able to move into our rental in Little Torch Key and are here until March 1st. The weather has not cooperated well, but we've had some company and some fun times.
It is wonderful to be here and not feel sick like I did last year. I had a melt down of sorts before leaving Baltimore, but with the insight of my daughter, Lisa, I realized that I was just plain scared to be away from my doctors and the excellent care that I know is available at JHH. Once I acknowledged my fear I was able to leave home and trust that I would be okay. So far so good. I guess I really am on the road to recovery! YES!
After we left Clearwater we went to Tampa to visit Brad and his wife for a few days. We enjoyed our visit very much and I was oh, so glad to see my brother again. From Tampa we went to Punta Gordo to see some long-time friends for three days. In an effort to find warmer weather we took off for the keys and stayed at a cute little resort for 3 days in Islamarado. On Jan. 29th we were able to move into our rental in Little Torch Key and are here until March 1st. The weather has not cooperated well, but we've had some company and some fun times.
It is wonderful to be here and not feel sick like I did last year. I had a melt down of sorts before leaving Baltimore, but with the insight of my daughter, Lisa, I realized that I was just plain scared to be away from my doctors and the excellent care that I know is available at JHH. Once I acknowledged my fear I was able to leave home and trust that I would be okay. So far so good. I guess I really am on the road to recovery! YES!
Friday, February 19, 2010
Thanksgiving & Christmas-The Condensed Version
Thanksgiving was a very special time for me. As I reminisce even now I vividly remember how grateful I felt to be there, surrounded by my family sharing a delicious meal. I could definitely feel "the love" in the room.
On Dec. 12th I started with a cold. By Dec. 13th it turned into a nasty virus - surely my body would not fail me, but it did. Two solid weeks and two rounds of heavy antibiotics got me through. How I managed to survive that, the blizzard, and a pretty serious plumbing problem, plus pull off Christmas to boot is truly a miracle.
We had a great New Year's celebration with friends, but by weekend's end I started with a scratchy throat. This time it turned into a bronchial infection. Two more weeks of yet another potent antibiotic (Avelox - $210.00) kept me from folding completely, but I was a mighty sick puppy. The result - a fully decorated Christmas tree that is still standing in my living room!
On Dec. 12th I started with a cold. By Dec. 13th it turned into a nasty virus - surely my body would not fail me, but it did. Two solid weeks and two rounds of heavy antibiotics got me through. How I managed to survive that, the blizzard, and a pretty serious plumbing problem, plus pull off Christmas to boot is truly a miracle.
We had a great New Year's celebration with friends, but by weekend's end I started with a scratchy throat. This time it turned into a bronchial infection. Two more weeks of yet another potent antibiotic (Avelox - $210.00) kept me from folding completely, but I was a mighty sick puppy. The result - a fully decorated Christmas tree that is still standing in my living room!
Monday, January 25, 2010
Thanks and Apologies
I was pleasantly surprised to hear that many of you continue to monitor this blog to learn of my progress and were disappointed to find that I had abandoned my post. Your concern and support is overwhelming and I humbly apologize for being lax. Rest assured I am doing fine and promise to not let things slide again. In the next few days and weeks I will be adding some new information and updates. Thanks for sticking with me and I'll do my best to keep up.
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