Today, Dec 2, 2011 is the longest I've gone since my first Sarcoma diagnosis in Jan of 2007 without seeing a doc or have a test of some sort. It had been six months, and I was used to every three since the beginning. But good news for me. My chest CT is clear and we will not do another until June 2012' along with an MRI on my leg, as a yearly precaution. I had some big concerns this time that turned out to be nothing. There was a lump above my right thigh, Doc O deemed nothing He believes much of my pain in my leg is "his fault" from all the vascular stuff he had to cut out to take out the tumor and vein reflux is just part of it. There are simple enough procedures to handle this. When the cardio vascular surgeon learned I'd had two thorochotomies he and a new found respect for me like I was a war hero I will deal with this vein thing in a few weeks. Another concern i had was this upper respiratory infection I am fighting and how that might present some "spots" on my lungs. My first thorochotomy turned out to be an infection and not sarcoma, and I am determined to never be cut like that again if I don't have to be.
It was all a great relief and we are both so pleased! Boy, will I sleep good tonight! Our Xmas trip to England is stil up in the air as Bob has jury duty and we don't know how long he will be tied up with that and I have lots of work to do before year end. Bob!a going to be a grandpa in mid Jan so he may need to schedule his trip then instead. We will know more next week.
We hope you enjoy your weekend I know I am cherishing every moment of mine! By the way, as a early holiday gift, Bob made the first two years of this blog as a hard back book so I guess I am published now. I am hoping either Angelina Jolee or Halle Berry plans me in the movie!
Take care, and have a wonderful holiday,
Love,
Geri
Friday, December 2, 2011
Wednesday, June 1, 2011
Super news!
I had CTs on chest, abdomin and pelvic area as well as leg MRI and all is good. In fact,I sort of got promoted. I don't have to have chest CT for 6 months (had been every 3) and others for another year (vs 6 months). Doc O felt I'd been clear a long enough and did not want me to have so much radiation from Cts. Also, he'd consulted with other docs at a conference and their frequency for cases like mine was all over the place, so he felt sure this would be ferquent and not put me at risk. He said if I started feeling insecure about it or felt something was not right to call and come in sooner. As long as he is comfortable with this, so am I! We did talk about the fact I've seen him every 90 days for 4 years, so if I start missing him I should drop by for a visit and bring a 6 pack of beer. Very upbeat and positive vist and great way to start a wonderful holiday weekend.
Next scans not till Dec so we can make vacation plans probably through year end with out fear of any changes or surprise treatments! It is very weird being this "free" but a weird I really want to get used to feeling!
Assuming no problems that pop up before, I probably won't blog again till mid December. All is good, and we are attempting to live a very normal, and boring life! Yea!
Next scans not till Dec so we can make vacation plans probably through year end with out fear of any changes or surprise treatments! It is very weird being this "free" but a weird I really want to get used to feeling!
Assuming no problems that pop up before, I probably won't blog again till mid December. All is good, and we are attempting to live a very normal, and boring life! Yea!
Wednesday, February 23, 2011
Good news!
I got another "lungs all clear" report from Doc O today. It took so long to see him again that he had already gotten the written report from Radiology confirming what he saw-- or what he did not see, so it is official. We will do it all over again on May 20, including leg MRI, abdomin and pelvic area this time. The only change is I no longer have to have contrast. It is yucky stuff to drink, but the worse part is what they shoot up Your veins. It sends this warm sensation throughout your body. I always feel like I wet my pants! Then you kinds of feel yucky for a couple of hours; it is not awful, but just a pain!
Speaking of 'pain" - Doc O and I did discuss my leg/hip discomfort. He pretty much just said "it was just going to hurt" - all the radiation, surgery, scar tissue, disconnected and reconnection etc. So it is what it is and is nothing that I should be scared of - just something I live with! I get massages every two weeks, take some non narcotic pain medicine, stretch a lot and get on with life. And now I am going to get dressed for my tennis lesson! There were so many times, I thought I'd never get to say that again! I am a lucky girl!
Speaking of 'pain" - Doc O and I did discuss my leg/hip discomfort. He pretty much just said "it was just going to hurt" - all the radiation, surgery, scar tissue, disconnected and reconnection etc. So it is what it is and is nothing that I should be scared of - just something I live with! I get massages every two weeks, take some non narcotic pain medicine, stretch a lot and get on with life. And now I am going to get dressed for my tennis lesson! There were so many times, I thought I'd never get to say that again! I am a lucky girl!
Wednesday, February 16, 2011
Scan date changed!
Just wanted to let you know my doctor's plans changed, so my appointment changed, and I am not having my CT scan (was scheduled for today) until next Wednesday late afternoon. I promise to update as soon as I can next Wednesday night. Thanks so much for keeping up with me!
Thursday, November 18, 2010
Another good report
I am so sorry I worried some of you by not blogging after my scans yesterday. It was all good news but everything ran late, and I rushed home just in time to head back to Emory for my sarcoma suport group last night. It was an exhausting day with full CT scans (chest, abdomin and pelvic area) and MRI on my leg. Then we had a long wait to see DocO. Often, when he sees me the full radiology written report is not in, but he has reviewed the scans and can generally tell what they are revealing. He always emphasizes there is a lot of scar tissue so there could be something he is not seeing, that the radiologist will pick up, but he has not been wrong yet. While our long wait to see him yesterday produced a lot of panic on my part, it was enough time to get the full written radiology report which was great news that showed nothing new and all clear!
DocO was a little concerned that I looked a little tired. I told him that since there was NED (no evidence of diease) meaning no cancer, that my being tired was not his problem but one I would take up with my family practice doc. I have been pretty stressed about these scans for the last couple of months so I think that is probably why I am tired all the time. Funny - I feel alot better today! But I will go get some blood run and see if there is more to it. But one thing for sure-- it is not sarcoma! The do a CT on my chest every 3 months but only look at pelvic, abdomin and leg every 6 months. That makes me more nervous about these scans as it seems like some bad stuff could grow in that time frame. I keep forgetting that if the docs thought that was an issue they would run the tests more frequently, but logic really does not come into play for me around scan time. I just get in panic mode and can't focus on much else!
I went to my Sarcoma support group and we talked alot about scan anxiety, and we all felt the same way. It is a great "rush" when the doc tells you all "looks good" and then about 20 minutes later you start sinking because you know that good report is only "good" for the next 90 days till the next time. You don't have a lot of time to celebrate the good news. Fortunately, the sinking feeling only last a few days and then you get on with life. Sharing all that at support group last night really helped me get past that alot quicker so I am already on the upside now!
We have been taking a lot of long weekend vacations the last couple of months so that and work has kept me occupied and not thinking so much lately. We have been visiting friends in Navarre Beach, Sarasota, Denver and Steamboat Springs, CO and it has been great. They have been good relazing vacations and gotten to spend wonderful time with good friends. This weekend we have a friend Debbie visiting us from St. Louis that we have not see in about 10 years. We go to Birmingham for Thanksgiving next Thursday, and then Bob is off to England on Dec 7 for Christmas. I will join him on the 21st, and we are both really looking forward to that.
Next scans are Feb 16 and I don't even see the DocO till 3:30 which really means about 5pm. So I will promise to blog that night but know it will be later since we will be coming back in Atlanta rush hour so who knows how long that will take.
We wish you all a wonderful holiday season. Again, we have an awful lot to be thankful for. All of you and your support are a major part of that!
DocO was a little concerned that I looked a little tired. I told him that since there was NED (no evidence of diease) meaning no cancer, that my being tired was not his problem but one I would take up with my family practice doc. I have been pretty stressed about these scans for the last couple of months so I think that is probably why I am tired all the time. Funny - I feel alot better today! But I will go get some blood run and see if there is more to it. But one thing for sure-- it is not sarcoma! The do a CT on my chest every 3 months but only look at pelvic, abdomin and leg every 6 months. That makes me more nervous about these scans as it seems like some bad stuff could grow in that time frame. I keep forgetting that if the docs thought that was an issue they would run the tests more frequently, but logic really does not come into play for me around scan time. I just get in panic mode and can't focus on much else!
I went to my Sarcoma support group and we talked alot about scan anxiety, and we all felt the same way. It is a great "rush" when the doc tells you all "looks good" and then about 20 minutes later you start sinking because you know that good report is only "good" for the next 90 days till the next time. You don't have a lot of time to celebrate the good news. Fortunately, the sinking feeling only last a few days and then you get on with life. Sharing all that at support group last night really helped me get past that alot quicker so I am already on the upside now!
We have been taking a lot of long weekend vacations the last couple of months so that and work has kept me occupied and not thinking so much lately. We have been visiting friends in Navarre Beach, Sarasota, Denver and Steamboat Springs, CO and it has been great. They have been good relazing vacations and gotten to spend wonderful time with good friends. This weekend we have a friend Debbie visiting us from St. Louis that we have not see in about 10 years. We go to Birmingham for Thanksgiving next Thursday, and then Bob is off to England on Dec 7 for Christmas. I will join him on the 21st, and we are both really looking forward to that.
Next scans are Feb 16 and I don't even see the DocO till 3:30 which really means about 5pm. So I will promise to blog that night but know it will be later since we will be coming back in Atlanta rush hour so who knows how long that will take.
We wish you all a wonderful holiday season. Again, we have an awful lot to be thankful for. All of you and your support are a major part of that!
Friday, August 13, 2010
A good Friday the 13th
What a good day! I had a chest CT today and DocO gave me an "all clear", so once again it is a big relief. For the last year, my CTs have not just been chest but also abdomen and pelvic area and I had to drink a contrast the night before and day of as well as have an IV during the CT. I did not realize the order for today's scans had changed, so I drank the yucky contrast last night. As I was downing the last bit in the waiting area today, Terri, the CT Tech saw me gulping it, and told me I wasn't having contrast today. I have sort of been "promoted" and only have contrast every 6 months, still scans every 3 months. When you have contrast, you can't have anything to eat from midnight the night before until after the scan. So I drank the stuff and starved myself until 11am (when I had the scans) for no apparent reason. But the good news made it all worthwhile.
I now have now been "clean" or NED (no evidence of diease) for a year (since my thorochotomy last August). It is hard to believe, it has now been 3 years since my leg surgery and about 3 1/2 since I started chemo. Sometimes it seems like yesterday and others it seems like a lifetime ago and that it really happened to someone else, not me. I am going to do my best to put is all behind me and forget about it for about 11 weeks. My next tests are Nov 17, so I am not going to start freaking out about them until Nov 10. That is a pretty good break!
Bob and I got back from England last Friday. He was there for a month and me a little over two weeks. We went a few weeks later in the summer than we usually do, hoping for better weather, and we got it. The temperature was about 65 to 68 degrees during the day (when all of you were in the high 90's) , and we had very little rain, so we got to spend a lot of time outside. I got to do a few walks with Bob and his sister Jackie, and others, but I did have a hard time on some of the steeper walks. My leg just does not lift up that well, and I am not so steady on my feet --but lets face it- I have always lacked coordination! But also I could really feel my lungs a little bit more, felt breathless, which kind of scared me and made me suspect my scan might not be so good this time. Maybe I just need to be in better shape and get back to the gym! So that is the plan. We had a lovely trip, and it was great to see family and friends. I could not help but be a bit anxious knowing I was coming back to CT's, so I was a little distracted some of the time. We will probably go back to England for Christmas. Our big decision is whether we wait until after my Nov 17 scans to book our trip, or take a leap of faith all will be well and set it up before hand.
I know so many of you bought Atlanta Sarcoma Walk tee shirts or made donations to the Southeastern Sarcoma Group, and I am so appreciative. They have not provided me a list of contributors yet, so if I have not thanked you, please forgive me. I just have not been told yet. We have a meeting next Wednesday night, so I am sure I will get all the updates then. We have 180 attendees up from 140 last year, which is great. I was a little worried about attendance since it was so hot and also because so many of you came last year, and would not be coming since we would be in England. But as I've learned, the world does not stop turning because I am not there, and I am so glad it was so successful.
We are finally back in the swing of things, over jet lag and now that I am not worried about my scans, it is time for me to get back to "normal" whatever that is! No more excuses! We need to both hit the ground running Monday morning. We have a low key weekend planned, so we will be ready to go. I have a long "honey do" list for Bob, and lots of work planned for me, so life is good!
Thanks for checking in on me!
I now have now been "clean" or NED (no evidence of diease) for a year (since my thorochotomy last August). It is hard to believe, it has now been 3 years since my leg surgery and about 3 1/2 since I started chemo. Sometimes it seems like yesterday and others it seems like a lifetime ago and that it really happened to someone else, not me. I am going to do my best to put is all behind me and forget about it for about 11 weeks. My next tests are Nov 17, so I am not going to start freaking out about them until Nov 10. That is a pretty good break!
Bob and I got back from England last Friday. He was there for a month and me a little over two weeks. We went a few weeks later in the summer than we usually do, hoping for better weather, and we got it. The temperature was about 65 to 68 degrees during the day (when all of you were in the high 90's) , and we had very little rain, so we got to spend a lot of time outside. I got to do a few walks with Bob and his sister Jackie, and others, but I did have a hard time on some of the steeper walks. My leg just does not lift up that well, and I am not so steady on my feet --but lets face it- I have always lacked coordination! But also I could really feel my lungs a little bit more, felt breathless, which kind of scared me and made me suspect my scan might not be so good this time. Maybe I just need to be in better shape and get back to the gym! So that is the plan. We had a lovely trip, and it was great to see family and friends. I could not help but be a bit anxious knowing I was coming back to CT's, so I was a little distracted some of the time. We will probably go back to England for Christmas. Our big decision is whether we wait until after my Nov 17 scans to book our trip, or take a leap of faith all will be well and set it up before hand.
I know so many of you bought Atlanta Sarcoma Walk tee shirts or made donations to the Southeastern Sarcoma Group, and I am so appreciative. They have not provided me a list of contributors yet, so if I have not thanked you, please forgive me. I just have not been told yet. We have a meeting next Wednesday night, so I am sure I will get all the updates then. We have 180 attendees up from 140 last year, which is great. I was a little worried about attendance since it was so hot and also because so many of you came last year, and would not be coming since we would be in England. But as I've learned, the world does not stop turning because I am not there, and I am so glad it was so successful.
We are finally back in the swing of things, over jet lag and now that I am not worried about my scans, it is time for me to get back to "normal" whatever that is! No more excuses! We need to both hit the ground running Monday morning. We have a low key weekend planned, so we will be ready to go. I have a long "honey do" list for Bob, and lots of work planned for me, so life is good!
Thanks for checking in on me!
Sunday, July 18, 2010
Atlanta Sarcoma Walk 2010 - Helping Save Our Lives
Dear Family and Friends,
This time last year, as I was preparing to go to the Atlanta Sarcoma Walk, I was also preparing for my second major lung surgery only 10 days later. I am lucky this year that so far I am clean and healthy – and NED (no evidence of disease). Unfortunately, that is not the case for the two members of our little group in Atlanta we lost this year, nor at least two other friends of mine going through current treatment at Emory’s Winship Cancer Center.
The “good news” is that Sarcoma only affects 12,000 new patients in the US each year. But that is also the “bad news” too. It means most people are not aware of Sarcoma, so the disease awareness and funding for programs, research, and clinical trials doesn’t receive the attention of more “popular” widespread illnesses. I am so lucky that Atlanta does have a top notch Sarcoma center at Emory, and our patient support group is very active in helping each other and bringing awareness to our community. The contributions we’ve raised have gone directly to programs created for our members and future Sarcoma survivors. It is amazing to think that donations to the Southeastern Sarcoma Foundation are helping to fund our Peer Partner program (where Sarcoma survivors like me can work with new patients as they go through our pretty torturous treatment regimen), or it will help fund research right at Emory to create clinical trials that might actually save my life.
Bob and I are devastated that we are unable to attend the Atlanta Sarcoma Walk this Saturday at 10am Piedmont Park. So many of you were there with us to walk last year, or bought tee shirts or made donations, and we are so appreciative. We hope you will consider doing the same this time.
I am attaching some info and links that will either give you tee shirt ordering and/or Walk registration site or direct contribution information. I know they have a limited quantity of tee shirts, but the donation site should always be up and available, even after the Walk is complete.
Many thanks to all of you for your continued support – emotional and as well as financial. Please feel free to pass this email on to anyone you think would be interested in attending the Atlanta Sarcoma Walk, learning more about Sarcoma or making a donation to assist our program. If any of you have Facebook sites or other social networking locations you’d like to post this on, please feel free to do so. Thank you so much for helping us fight this awful disease!
Fondly,
Geri
Greetings Sarcoma Supporter!
We are one week away from the 3rd Walk for Sarcoma Awareness to be held at Piedmont Park Saturday morning July 24, 2010 at 10am. After some delays and many long hours we are excited to release the website www.sarcomaawareness.org which is run by the Southeastern Sarcoma Foundation. This site is still very much in its infancy but will guide you with the information regarding the walk. Please click on the link http://www.sarcomaawareness.org/Sarcoma_Walk_2010.html for all the details regarding the walk as well as if you would like to pre-order a t-shirt (limited quantities, see attached design) and we will ship the shirt to you in advance so that you can wear it at the walk.
We are excited to also announce that we will be celebrating the day at 12pm after the walk at the Park Tavern. This wonderful restaurant is located on the corner of 10th Street and Monroe Drive and its patio will be our staging area. They have generously (through Matt Spelich) provided a large area with tables for post walk dinging or hanging out. We will have a short program after the walk (15 mins) to celebrate the day. Please contact me with any questions prior to the walk. Free parking is available on 10th Street and there is a $5.00 fee for parking in the gravel lot next to Park Tavern located off Monroe Drive.
We are expecting over 200 people this year to make this the biggest and best Walk ever!
Sincerely,
Ned Crystal
678-779-8572 Mobile/Direct
678-233-3201 Fax
Southeastern Sarcoma Foundation – Founder & 2 Time Sarcoma Survivor
www.sarcomaawareness.org
Emory Winship Cancer Institute - Survivorship Steering Committee Member, Peer Partner Committee Member, Sarcoma Support Group Facilitator
YACS (Young Adult Cancer Survivors of Atlanta) - Board Member
This time last year, as I was preparing to go to the Atlanta Sarcoma Walk, I was also preparing for my second major lung surgery only 10 days later. I am lucky this year that so far I am clean and healthy – and NED (no evidence of disease). Unfortunately, that is not the case for the two members of our little group in Atlanta we lost this year, nor at least two other friends of mine going through current treatment at Emory’s Winship Cancer Center.
The “good news” is that Sarcoma only affects 12,000 new patients in the US each year. But that is also the “bad news” too. It means most people are not aware of Sarcoma, so the disease awareness and funding for programs, research, and clinical trials doesn’t receive the attention of more “popular” widespread illnesses. I am so lucky that Atlanta does have a top notch Sarcoma center at Emory, and our patient support group is very active in helping each other and bringing awareness to our community. The contributions we’ve raised have gone directly to programs created for our members and future Sarcoma survivors. It is amazing to think that donations to the Southeastern Sarcoma Foundation are helping to fund our Peer Partner program (where Sarcoma survivors like me can work with new patients as they go through our pretty torturous treatment regimen), or it will help fund research right at Emory to create clinical trials that might actually save my life.
Bob and I are devastated that we are unable to attend the Atlanta Sarcoma Walk this Saturday at 10am Piedmont Park. So many of you were there with us to walk last year, or bought tee shirts or made donations, and we are so appreciative. We hope you will consider doing the same this time.
I am attaching some info and links that will either give you tee shirt ordering and/or Walk registration site or direct contribution information. I know they have a limited quantity of tee shirts, but the donation site should always be up and available, even after the Walk is complete.
Many thanks to all of you for your continued support – emotional and as well as financial. Please feel free to pass this email on to anyone you think would be interested in attending the Atlanta Sarcoma Walk, learning more about Sarcoma or making a donation to assist our program. If any of you have Facebook sites or other social networking locations you’d like to post this on, please feel free to do so. Thank you so much for helping us fight this awful disease!
Fondly,
Geri
Greetings Sarcoma Supporter!
We are one week away from the 3rd Walk for Sarcoma Awareness to be held at Piedmont Park Saturday morning July 24, 2010 at 10am. After some delays and many long hours we are excited to release the website www.sarcomaawareness.org which is run by the Southeastern Sarcoma Foundation. This site is still very much in its infancy but will guide you with the information regarding the walk. Please click on the link http://www.sarcomaawareness.org/Sarcoma_Walk_2010.html for all the details regarding the walk as well as if you would like to pre-order a t-shirt (limited quantities, see attached design) and we will ship the shirt to you in advance so that you can wear it at the walk.
We are excited to also announce that we will be celebrating the day at 12pm after the walk at the Park Tavern. This wonderful restaurant is located on the corner of 10th Street and Monroe Drive and its patio will be our staging area. They have generously (through Matt Spelich) provided a large area with tables for post walk dinging or hanging out. We will have a short program after the walk (15 mins) to celebrate the day. Please contact me with any questions prior to the walk. Free parking is available on 10th Street and there is a $5.00 fee for parking in the gravel lot next to Park Tavern located off Monroe Drive.
We are expecting over 200 people this year to make this the biggest and best Walk ever!
Sincerely,
Ned Crystal
678-779-8572 Mobile/Direct
678-233-3201 Fax
Southeastern Sarcoma Foundation – Founder & 2 Time Sarcoma Survivor
www.sarcomaawareness.org
Emory Winship Cancer Institute - Survivorship Steering Committee Member, Peer Partner Committee Member, Sarcoma Support Group Facilitator
YACS (Young Adult Cancer Survivors of Atlanta) - Board Member
Subscribe to:
Posts (Atom)
