I get to take Michael up to the hospital early tomorrow morning to have his Port finally removed. YEAH!!! We are so happy for this. Other than that, we are taking it one day at a time. Some days his pain in is low back / tailbone area gets pretty strong and we have to medicate him. Other days, the ones he just lays around, his pain is somewhat tolerable.
I will update everyone again once we get Michael home. Just one more step complete.
Sending warm hugs from Texas!! ~
Melodie
Thursday, January 21, 2010
Wednesday, January 13, 2010
DANCING, DANCING IN THE STREETS!!! ~
OK, the official word of the day is NED!!!! Yes, Michael’s scans looked great!!!! We are so excited. We are both doing “the Happy Dance” and Michael doesn’t dance!!
Today we actually did get to see all three of his doctors. We started off the morning seeing his neurosurgeon. He was extremely pleased with Michael’s progress. First thing he did tell us is there is NO TUMOR PRESENT in any of the scans. We are so happy. He did say that the surgical area, spinal cord is looking better than they had expected. His nerves in the previous scans were still clumped together, but seem to be spreading out like they should be allowing more of a free flowing. They still have some “clumping” but overall it’s looking better. We went over the nerve damaged areas and that hasn’t changed any. As Michael told the doctor, he is just getting “use” to it.
Down side, Michael does have a fractured tailbone. The neurosurgeon said this would be due to the radiation weakening the area and he could have easily fractured it. This could explain for the lower back pains he’s been having. He said Michael needs to work real hard on his core strengthening. We need to work on getting Michael back in shape. We are scheduled to go back and see him in 6 months.
We stopped by the orthopedic doctor’s office after that (they are on the same floor) to see if they could possibly work Michael in today instead of us having to drive back to Dallas next week. They said no problem. We had to wait around for about an hour and were able to go back to the exam room. Doc came in and was excited to see Michael up on his feet. We went over his interpretation of the reports and his excitement of how Michael has progressed since the last time we seen him. Michael doesn’t remember that time as that is part of the 2 weeks Michael still does not remember. Doc explained how amazing it was to watch and assist the neurosurgeon on Michael’s surgery. He also talked about how amazing it is that Michael has been given a second chance and yes he has. He did say that the disk degeneration that Michael does have looks good at this point. He did say he wants Michael to continue to stay away from the heavy lifting.
He said that if we ever move from the area to be sure we talk to him first. He doesn’t want Michael to ever get “lost”. He said by looking at the MRI’s now, if we had to take Michael to another doctor and say he had a “Ewing’s Sarcoma” inside the spinal cord, it would be hard to tell. I explained we will never leave his care. He’ll have to retire first and I don’t see this doctor retiring for a long time. Unless Michael has any more back pain or other problems, we will not have to see this doctor for 6 months to a year.
Michael and I went to grab some lunch over at the hospital cafeteria before we had to go see the oncologist. Of course on our way back over to the professional building all his doctors are in (yes all three are in the same building) we ran in to three different staff members from the oncology center. Of course none of them recognized him at first until he spoke, you know the whole he has hair thing. We go to the 7th floor, check in and go back to get his labs. On the way back to see the doctor, we ran in to Michael’s PA who didn’t recognize him with hair either. It’s such a neat thing to see these people’s faces as they realize who he is and the look on their face knowing we did beat cancer.
His oncologist came in with a big smile on his face and we went over everything again with him. He is extremely pleased with the scan reports. Michael’s labs are up and down. The red cells look great but his white counts are still down at 2.9K. We will go back to see the oncologist in 3 months and have a chest x-ray and labs again. We will re-do the scans again in 6 months and if all looks good at that point, we will go to 6 months visits for a year then go to yearly visits.
All three doctors are extremely impressed with Michael’s progress. We need to keep up with his headaches as he still gets one every few days and they come on extremely fast. We need to continue to keep his back pain under control and begin trying to rebuild Michael’s strength and stamina. To look at Michael, you would not know he was sick, but to someone who sees him daily and has known him for years, you can see where he has become extremely weak. We are also going to work on his sleeping. He still does not sleep well and can go days with no sleep. We also need to continue to monitor is fractured tailbone for a bit too.
Over all, today was a GREAT day!! Many smiles all around. Michael is still cancer free and we only can pray he stays this way. We could not have made it through the last 18 months without our family and friends. And to our sarcoma family, we will continue to stay in this fight with you. Each and every one of you has a special place in our hearts forever.
Please continue to keep all our sarcoma warriors in your thoughts and prayers. While Michael has kicked this horrible dreaded disease in the butt, many others are fighting the fight of their lives. Please continue to lift them up.
We love all of ya & sending many warm hugs from Texas!!!
Mel & Michael
Today we actually did get to see all three of his doctors. We started off the morning seeing his neurosurgeon. He was extremely pleased with Michael’s progress. First thing he did tell us is there is NO TUMOR PRESENT in any of the scans. We are so happy. He did say that the surgical area, spinal cord is looking better than they had expected. His nerves in the previous scans were still clumped together, but seem to be spreading out like they should be allowing more of a free flowing. They still have some “clumping” but overall it’s looking better. We went over the nerve damaged areas and that hasn’t changed any. As Michael told the doctor, he is just getting “use” to it.
Down side, Michael does have a fractured tailbone. The neurosurgeon said this would be due to the radiation weakening the area and he could have easily fractured it. This could explain for the lower back pains he’s been having. He said Michael needs to work real hard on his core strengthening. We need to work on getting Michael back in shape. We are scheduled to go back and see him in 6 months.
We stopped by the orthopedic doctor’s office after that (they are on the same floor) to see if they could possibly work Michael in today instead of us having to drive back to Dallas next week. They said no problem. We had to wait around for about an hour and were able to go back to the exam room. Doc came in and was excited to see Michael up on his feet. We went over his interpretation of the reports and his excitement of how Michael has progressed since the last time we seen him. Michael doesn’t remember that time as that is part of the 2 weeks Michael still does not remember. Doc explained how amazing it was to watch and assist the neurosurgeon on Michael’s surgery. He also talked about how amazing it is that Michael has been given a second chance and yes he has. He did say that the disk degeneration that Michael does have looks good at this point. He did say he wants Michael to continue to stay away from the heavy lifting.
He said that if we ever move from the area to be sure we talk to him first. He doesn’t want Michael to ever get “lost”. He said by looking at the MRI’s now, if we had to take Michael to another doctor and say he had a “Ewing’s Sarcoma” inside the spinal cord, it would be hard to tell. I explained we will never leave his care. He’ll have to retire first and I don’t see this doctor retiring for a long time. Unless Michael has any more back pain or other problems, we will not have to see this doctor for 6 months to a year.
Michael and I went to grab some lunch over at the hospital cafeteria before we had to go see the oncologist. Of course on our way back over to the professional building all his doctors are in (yes all three are in the same building) we ran in to three different staff members from the oncology center. Of course none of them recognized him at first until he spoke, you know the whole he has hair thing. We go to the 7th floor, check in and go back to get his labs. On the way back to see the doctor, we ran in to Michael’s PA who didn’t recognize him with hair either. It’s such a neat thing to see these people’s faces as they realize who he is and the look on their face knowing we did beat cancer.
His oncologist came in with a big smile on his face and we went over everything again with him. He is extremely pleased with the scan reports. Michael’s labs are up and down. The red cells look great but his white counts are still down at 2.9K. We will go back to see the oncologist in 3 months and have a chest x-ray and labs again. We will re-do the scans again in 6 months and if all looks good at that point, we will go to 6 months visits for a year then go to yearly visits.
All three doctors are extremely impressed with Michael’s progress. We need to keep up with his headaches as he still gets one every few days and they come on extremely fast. We need to continue to keep his back pain under control and begin trying to rebuild Michael’s strength and stamina. To look at Michael, you would not know he was sick, but to someone who sees him daily and has known him for years, you can see where he has become extremely weak. We are also going to work on his sleeping. He still does not sleep well and can go days with no sleep. We also need to continue to monitor is fractured tailbone for a bit too.
Over all, today was a GREAT day!! Many smiles all around. Michael is still cancer free and we only can pray he stays this way. We could not have made it through the last 18 months without our family and friends. And to our sarcoma family, we will continue to stay in this fight with you. Each and every one of you has a special place in our hearts forever.
Please continue to keep all our sarcoma warriors in your thoughts and prayers. While Michael has kicked this horrible dreaded disease in the butt, many others are fighting the fight of their lives. Please continue to lift them up.
We love all of ya & sending many warm hugs from Texas!!!
Mel & Michael
Sunday, January 10, 2010
Scans Today, Now the Waiting Game ~
Michael had his scans today and we still won’t hear anything until later in the week. Wednesday, we will go and see 2 of his 3 doctors (neurosurgeon and oncologist) and next week we will go and see his orthopedic surgeon, unless we can get his appointment changed. It was kind of strange sitting in the imaging center on a Sunday, so quiet, hardly anyone there. While I sat there waiting for his scans today, it gave me time to look back over the last 2 years. Yes, we started this journey almost 2 years ago. At times, I wonder how we made it. I am always getting asked a lot how did you do it. All I can say is with love, laughter, faith, friendship, fear, gratefulness, compassion, and support. I don't wish this journey on anyone. Today, it was just a different feeling. Knowing everything we have faced together the past several years, and then sitting there, all alone, but deep down, I know nothing, nothing is this world will stop Michael and I. I sat there remembering every little step along the way.
Almost 2 years ago, he started having pains in his back, but different from what he had experienced before with his previous back problems. After going to several doctors over several months, missing numerous days of work, in August of 2008, we finally began getting our answers.
I will never forget going to see his orthopedic surgeon on August 26, 2008. He picks me up at my office so I can go with him, I wanted answers and we completely trust this doctor. He had previously done 2 surgeries on Michael, not to mention he also fixed my dad's back too. We get to the parking lot, get out of his truck, and he looks at me, jumps up and down and said, "see, I am fine today, let's just skip this appointment." Of course, as he would say, the mean woman I am, I told him to get his butt up there, I want answers, and I am tired of you hurting. By this point, he hadn't worked for a week, and before that, he was lucky to make 2 of his 4 days a week.
Going in to his orthopedic doctor, once we go back, Michael always has to get an x-ray of his hardware first. So the nurse calls us back, quick small talk because it's been a while since we've seen any of them, I go towards the exam room to wait for him, and he heads towards x-ray. I start reading my book, and begin to wonder where he is. It's taking a little longer than usual. He finally walks in; tears in his eyes, he can hardly walk. He sits on the table, and my smart mouth, see good thing we are here.
About 10 minutes or so, doc walks in. Of course, he goes to shake Michael's hand, and as Michael lifts his hand, oh the pain. I can not describe the look on his face and then the doctor’s face. We describe a few things that have been going on with Michael and he says "that's it, you are a train out of control and I am stepping on the tracks to stop you." Just have got to love this doctor. By this point, Michael could not walk; we had to get him a wheel chair so I could take him down to the truck to drive him over to admitting. Luckily our doctor is on the hospital campus.
Tests, tests, and more tests. The next evening, doc finally comes in, of course at the time I finally go find me some food, and tells Michael he has a tumor inside his spinal cord compressing the nerves causing things to basically go haywire. Doc walks out of the room while on his phone telling someone he don't care what time it is, he needs to speak to them immediately, this is an emergency. Later find out it's the neurosurgeon.
So the next morning, my birthday, I keep the kids out of school, we go to the hospital and wait to talk with the doctors. I wanted our kids with me, I was so scared. So both doctors come by, explain everything and surgery was set for Tuesday. This was a Thursday and Labor Day weekend. The neurosurgeon comes back and said he cleared his calendar for Friday; we'll do it in the morning.
So Friday, August 29, 2008, I had the longest 6 1/2 hours of my life waiting in that waiting room, not knowing if he would be ok, if he would walk again. Didn't even think at that time the word Cancer would even come up. Tell ya how great his orthopedic surgeon is, he cleared his calendar too to be in the surgery room. Not to assist, but watch and keep tabs on Michael. Both doctors came and talked to me when they were done, even showed me pictures which was so cool. They placed him in ICU through the holiday, moved to a normal room, and he got up and walked. I was so excited.
Pathology took almost a month; no one was for sure what his tumor was when they removed it. Then Michael gets the call, it's not benign and the referred him to an oncologist. What's that mean, what is it? Cancer in the spine, WOW, Ewing’s Sarcoma which is a childhood cancer.
So, all in all, yes Michael had cancer. He had a kid cancer (the joke between he and I is, I us to always say he was a kid at heart, now in the back too). Did it change our lives, very much so, for the good and the bad. Did he kick cancer in the butt, oh yes he did. Michael and I have been together 22 years this past week. We have had many highs and lows, the good and the bad, and we have conquered each and every one of them. And this does include cancer.
Good, Michael and I are closer than ever. I love him more each passing day. We have met so many wonderful people, doctors, nurses, other medical personnel. Also, all you amazing, courageous, inspirational beautiful warriors fighting his disease too. And then their families, caregivers, thank you for your support. And all the love and support for our family and friends. You are amazing. Then there are also complete strangers who step up, Thank you.
The bad, yeah there is bad. Where Michael's and my relationship strengthened, we have lost relationships with a few people in our lives, family and friends. Michael can not go work and that takes a toll on any hard working man. We have lost many, many things along the way, but I still have my husband. I have watched parents’ lose their children, wives lose their husbands, and children lose their parents. This breaks my heart, we must find a cure.
I have watched him in the last 2 years change in so many ways, physically, mentally, spiritually, and emotionally. I have watched a grown man be scared for his life. I have watched him lose his hair, I have watched as they pump those chemo drugs into his body and watch him go from this fun loving man I know to this sick, tired man. And through all this, he still loves to make every one laugh around him. As he says, what can he do? He wants to live and live he will. Michael is my hero, and so is every single one of you that are fighting the battle of your life. Michael had spinal surgery to remove a tumor, told it was the big C word, went though a total of 11 in-patient chemo treatments, 33 radiation treatments, emergency gallbladder surgery, and is walking and talking. The way he has taken this is just simply amazing. He is a wonderful man.
So today I sat here, alone in this waiting room, but I know and feel the love around me from every single person who cares for us as he was in those machines for hours getting his scans. YES, all we want is NED.
I will try to update again everyone once we here the first word on his scans. Continue to keep all these beautiful, courageous people fighting this dreaded disease in your thoughts and prayers. We need to continue to fight and find a cure.
*Hugs*
Melodie
Almost 2 years ago, he started having pains in his back, but different from what he had experienced before with his previous back problems. After going to several doctors over several months, missing numerous days of work, in August of 2008, we finally began getting our answers.
I will never forget going to see his orthopedic surgeon on August 26, 2008. He picks me up at my office so I can go with him, I wanted answers and we completely trust this doctor. He had previously done 2 surgeries on Michael, not to mention he also fixed my dad's back too. We get to the parking lot, get out of his truck, and he looks at me, jumps up and down and said, "see, I am fine today, let's just skip this appointment." Of course, as he would say, the mean woman I am, I told him to get his butt up there, I want answers, and I am tired of you hurting. By this point, he hadn't worked for a week, and before that, he was lucky to make 2 of his 4 days a week.
Going in to his orthopedic doctor, once we go back, Michael always has to get an x-ray of his hardware first. So the nurse calls us back, quick small talk because it's been a while since we've seen any of them, I go towards the exam room to wait for him, and he heads towards x-ray. I start reading my book, and begin to wonder where he is. It's taking a little longer than usual. He finally walks in; tears in his eyes, he can hardly walk. He sits on the table, and my smart mouth, see good thing we are here.
About 10 minutes or so, doc walks in. Of course, he goes to shake Michael's hand, and as Michael lifts his hand, oh the pain. I can not describe the look on his face and then the doctor’s face. We describe a few things that have been going on with Michael and he says "that's it, you are a train out of control and I am stepping on the tracks to stop you." Just have got to love this doctor. By this point, Michael could not walk; we had to get him a wheel chair so I could take him down to the truck to drive him over to admitting. Luckily our doctor is on the hospital campus.
Tests, tests, and more tests. The next evening, doc finally comes in, of course at the time I finally go find me some food, and tells Michael he has a tumor inside his spinal cord compressing the nerves causing things to basically go haywire. Doc walks out of the room while on his phone telling someone he don't care what time it is, he needs to speak to them immediately, this is an emergency. Later find out it's the neurosurgeon.
So the next morning, my birthday, I keep the kids out of school, we go to the hospital and wait to talk with the doctors. I wanted our kids with me, I was so scared. So both doctors come by, explain everything and surgery was set for Tuesday. This was a Thursday and Labor Day weekend. The neurosurgeon comes back and said he cleared his calendar for Friday; we'll do it in the morning.
So Friday, August 29, 2008, I had the longest 6 1/2 hours of my life waiting in that waiting room, not knowing if he would be ok, if he would walk again. Didn't even think at that time the word Cancer would even come up. Tell ya how great his orthopedic surgeon is, he cleared his calendar too to be in the surgery room. Not to assist, but watch and keep tabs on Michael. Both doctors came and talked to me when they were done, even showed me pictures which was so cool. They placed him in ICU through the holiday, moved to a normal room, and he got up and walked. I was so excited.
Pathology took almost a month; no one was for sure what his tumor was when they removed it. Then Michael gets the call, it's not benign and the referred him to an oncologist. What's that mean, what is it? Cancer in the spine, WOW, Ewing’s Sarcoma which is a childhood cancer.
So, all in all, yes Michael had cancer. He had a kid cancer (the joke between he and I is, I us to always say he was a kid at heart, now in the back too). Did it change our lives, very much so, for the good and the bad. Did he kick cancer in the butt, oh yes he did. Michael and I have been together 22 years this past week. We have had many highs and lows, the good and the bad, and we have conquered each and every one of them. And this does include cancer.
Good, Michael and I are closer than ever. I love him more each passing day. We have met so many wonderful people, doctors, nurses, other medical personnel. Also, all you amazing, courageous, inspirational beautiful warriors fighting his disease too. And then their families, caregivers, thank you for your support. And all the love and support for our family and friends. You are amazing. Then there are also complete strangers who step up, Thank you.
The bad, yeah there is bad. Where Michael's and my relationship strengthened, we have lost relationships with a few people in our lives, family and friends. Michael can not go work and that takes a toll on any hard working man. We have lost many, many things along the way, but I still have my husband. I have watched parents’ lose their children, wives lose their husbands, and children lose their parents. This breaks my heart, we must find a cure.
I have watched him in the last 2 years change in so many ways, physically, mentally, spiritually, and emotionally. I have watched a grown man be scared for his life. I have watched him lose his hair, I have watched as they pump those chemo drugs into his body and watch him go from this fun loving man I know to this sick, tired man. And through all this, he still loves to make every one laugh around him. As he says, what can he do? He wants to live and live he will. Michael is my hero, and so is every single one of you that are fighting the battle of your life. Michael had spinal surgery to remove a tumor, told it was the big C word, went though a total of 11 in-patient chemo treatments, 33 radiation treatments, emergency gallbladder surgery, and is walking and talking. The way he has taken this is just simply amazing. He is a wonderful man.
So today I sat here, alone in this waiting room, but I know and feel the love around me from every single person who cares for us as he was in those machines for hours getting his scans. YES, all we want is NED.
I will try to update again everyone once we here the first word on his scans. Continue to keep all these beautiful, courageous people fighting this dreaded disease in your thoughts and prayers. We need to continue to fight and find a cure.
*Hugs*
Melodie
Friday, January 8, 2010
Quick Update ~
Busy, busy, busy… Don’t know if I ever have time to stop anymore. Christmas and New Year has come and gone. We hope everyone had a wonderful and safe Christmas and New Year. Ours was nice and quiet.
Michael has been doing OK. He has his good days and his bad days. We just take it one day at a time. Michael let his facial hair grow out to a full beard. Almost looked like grizzly Adams. He finally cut it off this past weekend. He figured he’d better clean himself up, was getting some funny looks out in public. I will have to post a photo when I get home. The hair on his head, not so much growth yet. Slow growing, but so baby fine and soft.
His 3 months is next week. We will go on Sunday (yes I said Sunday) to have all of his scans done. After his scans, we will meet with his orthopedic surgeon, his neurosurgeon, and his oncologist. We will have a week full of doctors’ visits. I am so nervous about his scans and I am sure he is as well. Please pray for NED, this is the only word we want to hear!
Going to keep this short, I will try to update again this weekend and if not, definitely will update once we here the first word on his scans. Thank you again to everyone who keeps Michael and me in your thoughts and prayers. You all mean the world to us and we are forever grateful. We love each and every one of you!! Also, continue to keep all these beautiful, courageous people fighting this dreaded disease in your thoughts and prayers. We need to continue to fight and find a cure.
*Hugs*
Melodie
Michael has been doing OK. He has his good days and his bad days. We just take it one day at a time. Michael let his facial hair grow out to a full beard. Almost looked like grizzly Adams. He finally cut it off this past weekend. He figured he’d better clean himself up, was getting some funny looks out in public. I will have to post a photo when I get home. The hair on his head, not so much growth yet. Slow growing, but so baby fine and soft.
His 3 months is next week. We will go on Sunday (yes I said Sunday) to have all of his scans done. After his scans, we will meet with his orthopedic surgeon, his neurosurgeon, and his oncologist. We will have a week full of doctors’ visits. I am so nervous about his scans and I am sure he is as well. Please pray for NED, this is the only word we want to hear!
Going to keep this short, I will try to update again this weekend and if not, definitely will update once we here the first word on his scans. Thank you again to everyone who keeps Michael and me in your thoughts and prayers. You all mean the world to us and we are forever grateful. We love each and every one of you!! Also, continue to keep all these beautiful, courageous people fighting this dreaded disease in your thoughts and prayers. We need to continue to fight and find a cure.
*Hugs*
Melodie
Subscribe to:
Posts (Atom)