Friday, September 16, 2011
I miss you mom...
Hey mom, its Amanda, I am having a girl!!! :) I thought about you when I saw the ultrasound. I miss you terribly.
Tuesday, May 24, 2011
Finally, an Update...
It has been awhile since my last post. I have wanted to get a new post out for some time, but a lot has been going on and I have not been feeling well. I did not do as well as we hoped on the last study--the tumors are both larger and have increased in number. After talking to my doctor at my last visit, we decided to discontinue treatment because I am no longer a candidate to continue with trials.
Now, I am taking this time to rest and spend time with Mike and my girls. I am not really well enough for visitors, but please know that I appreciate your thoughts and prayers. It would have been a lonely fight without the help of my family and friends. I appreciate you all very much, God Bless you and your families.
Love, Sharon
Now, I am taking this time to rest and spend time with Mike and my girls. I am not really well enough for visitors, but please know that I appreciate your thoughts and prayers. It would have been a lonely fight without the help of my family and friends. I appreciate you all very much, God Bless you and your families.
Love, Sharon
Friday, April 15, 2011
Hello To All
I'm sure you all are as happy as I am to have survived another Cleveland winter. It's tough enough to be home 24/7 when you're not used to it, but then throw in the bad weather and YUK! I do like being home, but still in some ways miss working. I guess it would be more accurate to say that I miss my old life. I am 20 months post diagnosis now so actually, I am getting used to this life and welcome how many weeks, months or years God is willing to give me despite the fact that I can't work or be who I used to be.
I just began the 3rd cycle of the clinical trial that I've been on through the Karmanos Cancer Center in Detroit. At the end of this cycle, they will scan me again to see if there are any changes in tumor size. I will have to make a trip up on April 26th for a scan and labs. They told me that they won't be able to give me results for maybe as long as a week after the scan. That is going to be really hard to wait that long. The reason is that they told me they want to give themselves enough time to measure everything carefully. If I have good results, we celebrate and move on to cycle 4. If there has been no improvement, or worsening of the disease, we will be going back to the drawing board.
I really pray hard that this treatment is working. It would be nice to get several more months of quality life. Despite my pain and stomach issues, I do feel pretty decent and now that the weather is getting nicer, I really have so many things I would like to do.
I saw Mia yesterday and what a treat that was. I will try and share some pictures with you. If she's not incentive to live...I'm not sure what is! Hope that you all have a beautiful Easter experience. It will be here before you know it. Praise God! I'm so glad that because of him we all have something to look forward to after our time here. Thoughts such as these bring me peace about leaving my loved ones. I wish you peace and a beautiful Spring!
Love,
Sharon
I just began the 3rd cycle of the clinical trial that I've been on through the Karmanos Cancer Center in Detroit. At the end of this cycle, they will scan me again to see if there are any changes in tumor size. I will have to make a trip up on April 26th for a scan and labs. They told me that they won't be able to give me results for maybe as long as a week after the scan. That is going to be really hard to wait that long. The reason is that they told me they want to give themselves enough time to measure everything carefully. If I have good results, we celebrate and move on to cycle 4. If there has been no improvement, or worsening of the disease, we will be going back to the drawing board.
I really pray hard that this treatment is working. It would be nice to get several more months of quality life. Despite my pain and stomach issues, I do feel pretty decent and now that the weather is getting nicer, I really have so many things I would like to do.
I saw Mia yesterday and what a treat that was. I will try and share some pictures with you. If she's not incentive to live...I'm not sure what is! Hope that you all have a beautiful Easter experience. It will be here before you know it. Praise God! I'm so glad that because of him we all have something to look forward to after our time here. Thoughts such as these bring me peace about leaving my loved ones. I wish you peace and a beautiful Spring!
Love,
Sharon
Friday, March 11, 2011
New Territory
So since my last post, a lot has been going on. I did get to Detroit, or more specifically, Karmanos Cancer Center, where my doctor here at home wanted me to go. As it turns out this is a very cool place with many more than just a few phase I studies going on. I'm told that if the one I'm on doesn't work, there are plenty more for me to try. That's good news.
My 1st trip consisted of an interview with one of the doctors heading the study and lab work all to get an idea if I qualified for something. The doctor talked a long time with me. I liked him a lot right out of the shoot. He seemed very smart, but also easy to talk to and even had a sense of humor. He made me feel pretty good about myself as he told me that I was still very strong and in fact, "A fantastic prospect for a study." Everything looked good for my being accepted, but there were still more tests to do so I was scheduled for a follow-up visit about a week later. That appointment consisted pretty much of the same with some added tests like EKG, ECHO, CT scan and more lab work. After that I waited to hear if there was anything that would keep me from being accepted. Fortunately, there wasn't and I was scheduled to come in and start on February 23rd. I came in that day, got started, but had to turn around and come back 2 days later for some special follow up lab work. Most of this lab work can be done here in Cleveland, but unfortunately, some has to be done there. I just got back from being there the 9th and 10th of March for some routine study tests. Mike went with me and we stayed at the Motor City Casino-Hotel. We don't gamble, but the hotel is fabulous so it was very comfortable to say the least. Fortunately, the drug company for the study drug picks up the tab for the hotel. I'm not complaining.
I take 2 pills every day. One is an already FDA approved drug for pancreas cancer and the other is the study drug. The hope is that the 2 drugs together have a synergistic affect meaning that when the 2 are combined, they work even harder. They are supposed to work together to reduce the size of tumors. They will test me to find out how it's working at the end of the 3rd cycle. Each cycle is 21 days long. I will finish the 1st cycle on March 16th and start the 2nd cycle on March 23rd.
The 2 more common side effects from the drugs are diarrhea, and an acne like rash. I've had the 1st, but no sign of a rash yet. I'm not complaining.
Other things going on.... well, my pain has been a challenge to get under control. Since being on the study, I haven't been allowed to take Allieve or Advil which I was taking along with my standard Oxycontin for pain. Just that change alone sent my pain back into a real crisis. They've changed my pain medication completely so now it shouldn't be a problem anymore.
The girls are all doing well. Jaime went back to work, but the baby is doing fine. Matt watches her when Jaime is working so they haven't needed to go outside for childcare at all. Right now their work schedules have provided them this luxury and hopefully it will continue.
Well, that should pretty much update everyone for now. I thank you for your continued prayers and support. Without it, I don't think I'd be here as long as I have. Thank you for everything :)
Love,
Sharon
My 1st trip consisted of an interview with one of the doctors heading the study and lab work all to get an idea if I qualified for something. The doctor talked a long time with me. I liked him a lot right out of the shoot. He seemed very smart, but also easy to talk to and even had a sense of humor. He made me feel pretty good about myself as he told me that I was still very strong and in fact, "A fantastic prospect for a study." Everything looked good for my being accepted, but there were still more tests to do so I was scheduled for a follow-up visit about a week later. That appointment consisted pretty much of the same with some added tests like EKG, ECHO, CT scan and more lab work. After that I waited to hear if there was anything that would keep me from being accepted. Fortunately, there wasn't and I was scheduled to come in and start on February 23rd. I came in that day, got started, but had to turn around and come back 2 days later for some special follow up lab work. Most of this lab work can be done here in Cleveland, but unfortunately, some has to be done there. I just got back from being there the 9th and 10th of March for some routine study tests. Mike went with me and we stayed at the Motor City Casino-Hotel. We don't gamble, but the hotel is fabulous so it was very comfortable to say the least. Fortunately, the drug company for the study drug picks up the tab for the hotel. I'm not complaining.
I take 2 pills every day. One is an already FDA approved drug for pancreas cancer and the other is the study drug. The hope is that the 2 drugs together have a synergistic affect meaning that when the 2 are combined, they work even harder. They are supposed to work together to reduce the size of tumors. They will test me to find out how it's working at the end of the 3rd cycle. Each cycle is 21 days long. I will finish the 1st cycle on March 16th and start the 2nd cycle on March 23rd.
The 2 more common side effects from the drugs are diarrhea, and an acne like rash. I've had the 1st, but no sign of a rash yet. I'm not complaining.
Other things going on.... well, my pain has been a challenge to get under control. Since being on the study, I haven't been allowed to take Allieve or Advil which I was taking along with my standard Oxycontin for pain. Just that change alone sent my pain back into a real crisis. They've changed my pain medication completely so now it shouldn't be a problem anymore.
The girls are all doing well. Jaime went back to work, but the baby is doing fine. Matt watches her when Jaime is working so they haven't needed to go outside for childcare at all. Right now their work schedules have provided them this luxury and hopefully it will continue.
Well, that should pretty much update everyone for now. I thank you for your continued prayers and support. Without it, I don't think I'd be here as long as I have. Thank you for everything :)
Love,
Sharon
Wednesday, February 16, 2011
Jaime & Matt's Wedding
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| Jaime and her Bridesmaids! From the left: Nicolette, Kelsey Marasch, Stephanie, Amanda and Rachel |
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| The Beautiful Bride |
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| The Handsome Groom |
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| Although it was FREEZING, it was a gorgeous day... Congrats Jaime and Matt! And thanks Angie Farro for beautiful pictures :) |
Thursday, February 10, 2011
Not Such Great News
Hi Everyone,
Jaime's wedding turned out really nice. We had a great day as the weather held off from any storms. She looked absolutely beautiful and there were no issues. I hope to be able to post some pictures. If you don't see them yet, that means I'm having difficulty so just be patient. Amanda will help me when I can get her to stop for a minute.
The not such great news involves my last scan that I had. Like the last one, it shows progression of my disease. This scan was done the Monday after Jaime's wedding so I guess that would have been on the 24th. The report said that there are now 5 liver lesions and both pancreatic tumors have enlarged. My splenic vein is completely obstructed and my splenic artery is constricted. So this means that I have less bloodflow to my spleen. So far this hasn't been a problem for me, but my doc said it could be. There is no longer a definite distinction between my stomach and pancreas. The doctor doesn't think the tumors have spread to my stomach, but they are communicating (for lack of a better word) with my stomach or hanging over my stomach to some degree.
So now what to do? My doctor reminded me about Detroit. There are no other chemotherapy options for pancreatic cancer. I've tried them all. (All 4 of them)! This is the shocking, upsetting news. Because there has been so little research done for pancreas cancer, there are very few tried and true chemotherapy drugs for the job. If you'd like to help with this situation I urge you to send a donation to PANCAN. This is an organization that is committed to education and research. Hopefully by the time my girls are my age, this disease won't have to be a death sentence. Anyway....back to what I'm going to do.
I went to Detroit just yesterday with Mike to meet the doctor who is in charge of the phase I trials. I won't go into everything you wanted to know about clinical trials, but I will tell you that I'm not eligible for phase 2 and 3. Phase I means that I will get a drug. There are no placebos. The study is mainly concerned with what doses are safe in humans, the best way to give the drug, and maybe a few other things that I can't remember right now. I may get lucky with the drug they give me and have some shrinkage or not. The doctor said that if it isn't working, he will pull me off that study and try another one. I will have to stay there for a week or so when getting started with a study. I won't find out details about that until they decide which study they want me on. There is a chance, but I won't get my hopes up, that hotel accomodations will be paid for by the study.
I am pleased with the doctor and the hospital. Unlike my experience in Baltimore, these people were really nice and made me feel as though they really cared about me. Similar to my experience with CTCA. The doctor seemed intelligent and had a sense of humor. He was very easy to talk to. We talked about my current health, what I can still do and can't do anymore etc. The MA came back in the room after he left and told me that he said I was a fantastic candidate! That's good news because you have to be healthy enough for a study or they simply won't take you. If I don't get better with the first study, I need to be able to go onto the next so staying healthy despite having this disease is my JOB right now. I need to eat right and make time to exercise (treadmill) to keep in good shape.
How about a subject change?! Mia got baptized last weekend and I got to make her dress. At first, after receiving this news, I wasn't really in the mood to sew. I had the dress cut out, but didn't start to put it together until Friday morning. I stuck with it and managed to finish Saturday night right in time for the big day. She looked very angelic! Now I basically am going to concentrate on getting my house in order (just in case) and doing things that make my heart sing!
No one knows how much time they have left, but having a disease like this one is a harsh reminder that it could all come to an end sooner than planned. My doctor told me, after I asked, that if this doesn't work, I would only have 6 months tops. We still have prayer and miracles really do happen. God knows what I want. I just have to hope and pray that it's what he wants to. Please continue to pray as you have and hopefully we can all convince him. Thank you! Love, Sharon
Jaime's wedding turned out really nice. We had a great day as the weather held off from any storms. She looked absolutely beautiful and there were no issues. I hope to be able to post some pictures. If you don't see them yet, that means I'm having difficulty so just be patient. Amanda will help me when I can get her to stop for a minute.
The not such great news involves my last scan that I had. Like the last one, it shows progression of my disease. This scan was done the Monday after Jaime's wedding so I guess that would have been on the 24th. The report said that there are now 5 liver lesions and both pancreatic tumors have enlarged. My splenic vein is completely obstructed and my splenic artery is constricted. So this means that I have less bloodflow to my spleen. So far this hasn't been a problem for me, but my doc said it could be. There is no longer a definite distinction between my stomach and pancreas. The doctor doesn't think the tumors have spread to my stomach, but they are communicating (for lack of a better word) with my stomach or hanging over my stomach to some degree.
So now what to do? My doctor reminded me about Detroit. There are no other chemotherapy options for pancreatic cancer. I've tried them all. (All 4 of them)! This is the shocking, upsetting news. Because there has been so little research done for pancreas cancer, there are very few tried and true chemotherapy drugs for the job. If you'd like to help with this situation I urge you to send a donation to PANCAN. This is an organization that is committed to education and research. Hopefully by the time my girls are my age, this disease won't have to be a death sentence. Anyway....back to what I'm going to do.
I went to Detroit just yesterday with Mike to meet the doctor who is in charge of the phase I trials. I won't go into everything you wanted to know about clinical trials, but I will tell you that I'm not eligible for phase 2 and 3. Phase I means that I will get a drug. There are no placebos. The study is mainly concerned with what doses are safe in humans, the best way to give the drug, and maybe a few other things that I can't remember right now. I may get lucky with the drug they give me and have some shrinkage or not. The doctor said that if it isn't working, he will pull me off that study and try another one. I will have to stay there for a week or so when getting started with a study. I won't find out details about that until they decide which study they want me on. There is a chance, but I won't get my hopes up, that hotel accomodations will be paid for by the study.
I am pleased with the doctor and the hospital. Unlike my experience in Baltimore, these people were really nice and made me feel as though they really cared about me. Similar to my experience with CTCA. The doctor seemed intelligent and had a sense of humor. He was very easy to talk to. We talked about my current health, what I can still do and can't do anymore etc. The MA came back in the room after he left and told me that he said I was a fantastic candidate! That's good news because you have to be healthy enough for a study or they simply won't take you. If I don't get better with the first study, I need to be able to go onto the next so staying healthy despite having this disease is my JOB right now. I need to eat right and make time to exercise (treadmill) to keep in good shape.
How about a subject change?! Mia got baptized last weekend and I got to make her dress. At first, after receiving this news, I wasn't really in the mood to sew. I had the dress cut out, but didn't start to put it together until Friday morning. I stuck with it and managed to finish Saturday night right in time for the big day. She looked very angelic! Now I basically am going to concentrate on getting my house in order (just in case) and doing things that make my heart sing!
No one knows how much time they have left, but having a disease like this one is a harsh reminder that it could all come to an end sooner than planned. My doctor told me, after I asked, that if this doesn't work, I would only have 6 months tops. We still have prayer and miracles really do happen. God knows what I want. I just have to hope and pray that it's what he wants to. Please continue to pray as you have and hopefully we can all convince him. Thank you! Love, Sharon
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