Michael went in for his CT scans on Monday and today we went to see his oncologist. His lab work was OK. It’s still down a little, but the doctor said in time it should come back up. After looking over the CT report, the doctor was happy to say that Michael is………
STABLE!!!!
Yes, we are jumping up and down. It was so nice to hear this. His oncologist had spoken with Michael’s other doctors this week. The plan is that Michael’s orthopedic surgeon will work with the neurosurgeon to order the MRI. But this will not be for 3 MONTHS…
So this means he is done. He is finished. Michael is finally FREE!!! So at this point the plan is, in three months we will call the orthopedic surgeon, schedule the MRI, and then go see all three doctors. He will have a chest X-ray every 3 months, and a CT every 6 months. We will see Michael’s oncologist every 3 months for the next year.
Once we got home, we realized, we were so happy, we forgot to ask about getting his port out. Michael will call his oncologist back tomorrow to see if we can get it out yet. Michael will take it one day at a time as he is still fighting fatigue, headaches, and other side effects.
HOPES for Michael CELEBRATION!!!!
So we can officially say we will be having the HOPES for Michael CELEBRATION in Kansas City. So mark your calendars and meet us there.
When: November 7, 2009
Where: Big Q Bar-B-Que, Kansas City, KS
I will update later with the complete details. We will also be posting an event from Michael’s group page on facebook.
Michael will take it one day at a time as he is still fighting fatigue, headaches, and other side effects.
Yes, we are happy at the moment. But at the same time, we can never loose site of those still fighting this dreaded disease. Please continue to keep all these beautiful warriors in your thoughts and prayers. And let’s continue to fight to find a cure.
Sending our love to everyone,
Melodie
Thursday, October 15, 2009
Sunday, October 11, 2009
Latest Update ~
Sorry for not updating in a while. Things never slow down. This may be a little long so sit back and get comfy!!
MICHAEL ~
Michael is doing OK. He went in for his labs again on the 28th. They were low as expected. He still gets tired very easy and has been fighting a bad cold for the past week. Luckily no fever!! Thursday (10/28) was his 21st day since his last treatment and would have been his day to go back. We did a small happy dance that we did not have to go check in for his treatment.
On a different note, this week was the first week since the end of May that I worked 5 days. Oh well, I will make up for it next week (only working 3). Tomorrow Michael goes in for his CT scan and we will meet with his oncologist on Thursday. We will go over his scan and hopefully by that time, he and neurosurgeon will have discussed what MRI scans they are wanting and when we will go have that done. After the MRI we will have his 1 year follow up with the neurosurgeon (a little late, but that’s OK). And once we hear “NED” (that is all we want to hear) then he will only gets scans and visits every 3 months.
The fun part, now that treatment is over, is going to keep him from over-doing it. He has it in his head that he is ready to go back to work. NOT… He is no where near ready.
CELEBRATION ~
A fun note, we are still working on some details for his CELEBRATION in Kansas City. We are looking at November 7th. Once I have the final details, I will be sending out the invites through his “HOPES for Michael” group page on facebook, through email invites, and through is page here. So pencil in on your calendar November 7th, “CELEBRATING HOPES for Michael”
OTHER SARCOMA FAMILIES ~
This week, a beautiful angel, Sammie, had earned her wings. Please continue to keep her family in your thoughts and prayers. Also, if you could lift up Jessica’s family; here is another beautiful warrior about to earn her wings.
Little Miss Laurren is still down in Mexico getting her treatment. Please continue to pray for her and her family. Also her wonderful home town is going to have “Christmas in October” for her on October 25th. If you are interested in helping, let me know. Michael and I are planning to attend. You can also find more information about this event at Laurren Smith Foundation.
This week, I had also read an update from Rhonda, the beautiful wife of Bryan who is continuing to struggle with this dreaded disease. But what she said is so very true. So I am going to continue her vent for her so if anyone is going to get offended as she stated in her update, then close your explorer now.
As Rhonda says, just because they are “cancer free” does NOT mean that everything goes back to normal. She is so right. Here is a family, whose husband, father can no longer work. They still struggle day to day trying to get through. They are at the end of their ropes in so many ways and need help. As a wife, she can only do so much. She has asked for help. This is a time where you really see who is your friends.
Currently two of our biggest care pages cheerleaders have stepped up to help. Please check out what they are doing. The “Wonder Aunts” (yes Aunt Lynda, I am giving the Texas Aunts a new name) are going to be holding a fundraising garage sale down in Sugar Land, TX. Check out Brittne's page. Even if you don’t live close, you can still help. Also Check out Supportnick's page. Kelly Olson, Andrea’s daughter is graciously stepping up to help. She too is going to hold a fundraising garage sale in Phoenix.
As I was talking to one of my very close friends about this (why does it feel like friends begin to abandon us), she told me this. As a person going through what we are, we know exactly what each other is saying. We may not know word for word what we are experiencing, but its pretty close. As a wife going through this myself, I can relate to the other wives. It’s a little harder to relate to the mothers going through this. We can not relate on the mom side, but the caregiver side. As a friend, they are there, they do care for us, but really have no idea what we go through daily and frankly at times, they are scared.
THESE BEAUTIFUL MEN FIGHTING THIS
Currently we have Michael, George, Bryan, Mike, Steve, Jonathan (I know there are more but my mind just went blank) that are men, dads, husbands fighting this. There are also women, moms, and wives who are fighting this too along with all the children. I am not leaving you out, but want to focus on these brave men. These are the “MAN OF THE HOUSE”. They are always the one to take care of the family and when they get sick, you take every little ounce of dignity away from them. They have a feeling that is indescribable to us. They can no longer be the “MAN” of the house. Here is the strongest person in our life and he becomes weak and fragile. He is supposed to protect us from the world. And right now, we have to care for and protect them.
Some of us were a 2 income family going down to one or half (depending if the wife can still work full time). Some of us, the man was the sole income and now the wife has to go out and get a job and that job no where matches the income they had. Then there is the health insurance. If any is like Michael, he carried his health insurance, got fired and now we have to pay COBRA (not cheap). Yeah there is social security disability, but did you know it takes 2 years for Medicare to kick in?
This is a childhood cancer, and it breaks my heart to read about the beautiful children, however, these cancers occurs regularly, randomly, and spares no ethnic group, socioeconomic class, geographic region, or age group. It can occur in ANYONE. The cause of most childhood cancers are unknown and at present, cannot be prevented. The research out there is very little. These cancers need to have more research done. With that, my husband, who is 39 years old, is fighting for his life with Ewing’s Sarcoma. They told us in the beginning there isn’t really a treatment geared toward the older people with this. He took a kids’ dosage, which his body may reject. The funny part is I don’t look at it as we are old, but with this cancer, he is.
When Michael was first diagnosed, we looked high and low for assistance. He was turned down by so many. He is not a child. He is not a woman with breast cancer. He does not have breast cancer. He is not elderly. He is a middle aged man who should not be sick. Right, a middle aged man that is suppose to support his family. But he did get sick. He had to stop working. He no longer felt like the man of the house. He could no longer be the rock of the family. He had to take on this treatment that frankly sucked the life out of him. But my husband still tries to make light of it. As Michael says, what can you do, we must deal with what we are handed. There is nothing we can do to change the fact he has cancer.
We did get some assistance in the beginning, and we are still forever grateful to those that did help, but it only goes so far. We still lost our house and our land. We still have unpaid bills haunting us from then. Even with insurance, we still have an extremely huge stack of medical bills. Yes, I work, but if I don’t go to work, I don’t get paid. My boss has been wonderful to work with me so I can go to every appointment, every scan, and every treatment with him. I track every little think that goes on with him. Michael and I stress every day over money. Yes, we have a place to stay for now. But you never know things could change in a heartbeat. I know money is tight all around and we can only make the best of the situation we are in. But there is only so much a person can take.
IS THIS NORMAL
Once a family gets a diagnosis like this, their world gets turned upside down. I was asked if this is the normal now or will we ever go back to normal. Here is how I responded:
“Is this our normal? For now it seems to be. But I always remember what Michael says... What can we do? This is how it is and we just need to make the most of it. He says he can't change anything, so let's enjoy what we can. The one thing he has taken from this is you can not take things for granted anymore and to make the most of it and have fun doing it.
If you were to know Michael before, he is an extremely private man. He would laugh and joke with you only if he knew you. He would NEVER have been caught dead with green hair. At first he did not even like me talking about what he was going through on the internet. He didn't even like me talking about it to people he knew. That was private stuff and needed to stay that way. He changed. He opened his eyes to the fact that life is short and we need to enjoy what we have today. Now he does the green hair, he talks to complete strangers; he even now bonds with strangers. He even told me to quit sugar coating his updates. There are still a few things I will not post... Mostly my fears and what I would say is personal stuff.
I guess what I am trying to say is normal is what we make it. Yes, I am scared every single day with Michael. I read other updates and hear of those that are done; just doing scans every 3 months. I see those who have relapses and relapses. I see those parents hanging on to every last moment with their babies. What is in store for Michael and me, only God knows and we have accepted that and we live each day filled with love and laughter. This year long battle has not been easy on us at all.”
TO ALL THE FRIENDS OUT THERE:
(Please feel free to copy and paste to your pages) Cancer is an extremely ugly disease. You must understand that this will be a part of our lives FOREVER. Even after treatment, we are not in the clear. We have scans every 3 months. This cancer can and will come back at anytime. Some of these men will never be the same. They can not work. But they are our men and we will stand by them and support them with or without you. I am sure some of you are tired of hearing the same ole’ thing about your friend and begin to distance yourselves. Please do something little to show you still care. The little things are the greatest things.
Cook a dinner for the family. Give a small gift card. Do you know a $25 dollar gift card to anywhere would mean to world to some. Offer a great big hug and a shoulder to cry on, yes you heard it all but a good cry for us will give us the strength to continue to move. To those with little ones, offer to watch them for a few hours. Just a few hours would be the world. Take the wife out for a nice manicure and pedicure. These don’t cost much. For him, take him fishing or take him out for a fun man’s night out. Yes, we might worry, but at least you are showing him you are still there. There are many other little things you can do. Yes, it does not help with the financial burdens we are suffering, but it does still show you care.
I have heard many say well try to do fundraisers or establish a medical fund. Some are better at doing this than others. Some of us don’t even know how to start these. And as the caregiver and patient, we sometimes have too much on our plates to do this. So as a friend, if you are good with this in anyway, offer that assistance to the family. Or get a group of friends together and come up with the ideas.
Ok, I will stop for now. As always, please continue to pray for all our beautiful sarcoma warriors. They all need our extra prayers. We love each of them and we need to continue to lift them up. Also, please continue to pray for a cure. And thank you once again for all the prayers and words of encouragement from everyone. We love all of you!!!!
Melodie
MICHAEL ~
Michael is doing OK. He went in for his labs again on the 28th. They were low as expected. He still gets tired very easy and has been fighting a bad cold for the past week. Luckily no fever!! Thursday (10/28) was his 21st day since his last treatment and would have been his day to go back. We did a small happy dance that we did not have to go check in for his treatment.
On a different note, this week was the first week since the end of May that I worked 5 days. Oh well, I will make up for it next week (only working 3). Tomorrow Michael goes in for his CT scan and we will meet with his oncologist on Thursday. We will go over his scan and hopefully by that time, he and neurosurgeon will have discussed what MRI scans they are wanting and when we will go have that done. After the MRI we will have his 1 year follow up with the neurosurgeon (a little late, but that’s OK). And once we hear “NED” (that is all we want to hear) then he will only gets scans and visits every 3 months.
The fun part, now that treatment is over, is going to keep him from over-doing it. He has it in his head that he is ready to go back to work. NOT… He is no where near ready.
CELEBRATION ~
A fun note, we are still working on some details for his CELEBRATION in Kansas City. We are looking at November 7th. Once I have the final details, I will be sending out the invites through his “HOPES for Michael” group page on facebook, through email invites, and through is page here. So pencil in on your calendar November 7th, “CELEBRATING HOPES for Michael”
OTHER SARCOMA FAMILIES ~
This week, a beautiful angel, Sammie, had earned her wings. Please continue to keep her family in your thoughts and prayers. Also, if you could lift up Jessica’s family; here is another beautiful warrior about to earn her wings.
Little Miss Laurren is still down in Mexico getting her treatment. Please continue to pray for her and her family. Also her wonderful home town is going to have “Christmas in October” for her on October 25th. If you are interested in helping, let me know. Michael and I are planning to attend. You can also find more information about this event at Laurren Smith Foundation.
This week, I had also read an update from Rhonda, the beautiful wife of Bryan who is continuing to struggle with this dreaded disease. But what she said is so very true. So I am going to continue her vent for her so if anyone is going to get offended as she stated in her update, then close your explorer now.
As Rhonda says, just because they are “cancer free” does NOT mean that everything goes back to normal. She is so right. Here is a family, whose husband, father can no longer work. They still struggle day to day trying to get through. They are at the end of their ropes in so many ways and need help. As a wife, she can only do so much. She has asked for help. This is a time where you really see who is your friends.
Currently two of our biggest care pages cheerleaders have stepped up to help. Please check out what they are doing. The “Wonder Aunts” (yes Aunt Lynda, I am giving the Texas Aunts a new name) are going to be holding a fundraising garage sale down in Sugar Land, TX. Check out Brittne's page. Even if you don’t live close, you can still help. Also Check out Supportnick's page. Kelly Olson, Andrea’s daughter is graciously stepping up to help. She too is going to hold a fundraising garage sale in Phoenix.
As I was talking to one of my very close friends about this (why does it feel like friends begin to abandon us), she told me this. As a person going through what we are, we know exactly what each other is saying. We may not know word for word what we are experiencing, but its pretty close. As a wife going through this myself, I can relate to the other wives. It’s a little harder to relate to the mothers going through this. We can not relate on the mom side, but the caregiver side. As a friend, they are there, they do care for us, but really have no idea what we go through daily and frankly at times, they are scared.
THESE BEAUTIFUL MEN FIGHTING THIS
Currently we have Michael, George, Bryan, Mike, Steve, Jonathan (I know there are more but my mind just went blank) that are men, dads, husbands fighting this. There are also women, moms, and wives who are fighting this too along with all the children. I am not leaving you out, but want to focus on these brave men. These are the “MAN OF THE HOUSE”. They are always the one to take care of the family and when they get sick, you take every little ounce of dignity away from them. They have a feeling that is indescribable to us. They can no longer be the “MAN” of the house. Here is the strongest person in our life and he becomes weak and fragile. He is supposed to protect us from the world. And right now, we have to care for and protect them.
Some of us were a 2 income family going down to one or half (depending if the wife can still work full time). Some of us, the man was the sole income and now the wife has to go out and get a job and that job no where matches the income they had. Then there is the health insurance. If any is like Michael, he carried his health insurance, got fired and now we have to pay COBRA (not cheap). Yeah there is social security disability, but did you know it takes 2 years for Medicare to kick in?
This is a childhood cancer, and it breaks my heart to read about the beautiful children, however, these cancers occurs regularly, randomly, and spares no ethnic group, socioeconomic class, geographic region, or age group. It can occur in ANYONE. The cause of most childhood cancers are unknown and at present, cannot be prevented. The research out there is very little. These cancers need to have more research done. With that, my husband, who is 39 years old, is fighting for his life with Ewing’s Sarcoma. They told us in the beginning there isn’t really a treatment geared toward the older people with this. He took a kids’ dosage, which his body may reject. The funny part is I don’t look at it as we are old, but with this cancer, he is.
When Michael was first diagnosed, we looked high and low for assistance. He was turned down by so many. He is not a child. He is not a woman with breast cancer. He does not have breast cancer. He is not elderly. He is a middle aged man who should not be sick. Right, a middle aged man that is suppose to support his family. But he did get sick. He had to stop working. He no longer felt like the man of the house. He could no longer be the rock of the family. He had to take on this treatment that frankly sucked the life out of him. But my husband still tries to make light of it. As Michael says, what can you do, we must deal with what we are handed. There is nothing we can do to change the fact he has cancer.
We did get some assistance in the beginning, and we are still forever grateful to those that did help, but it only goes so far. We still lost our house and our land. We still have unpaid bills haunting us from then. Even with insurance, we still have an extremely huge stack of medical bills. Yes, I work, but if I don’t go to work, I don’t get paid. My boss has been wonderful to work with me so I can go to every appointment, every scan, and every treatment with him. I track every little think that goes on with him. Michael and I stress every day over money. Yes, we have a place to stay for now. But you never know things could change in a heartbeat. I know money is tight all around and we can only make the best of the situation we are in. But there is only so much a person can take.
IS THIS NORMAL
Once a family gets a diagnosis like this, their world gets turned upside down. I was asked if this is the normal now or will we ever go back to normal. Here is how I responded:
“Is this our normal? For now it seems to be. But I always remember what Michael says... What can we do? This is how it is and we just need to make the most of it. He says he can't change anything, so let's enjoy what we can. The one thing he has taken from this is you can not take things for granted anymore and to make the most of it and have fun doing it.
If you were to know Michael before, he is an extremely private man. He would laugh and joke with you only if he knew you. He would NEVER have been caught dead with green hair. At first he did not even like me talking about what he was going through on the internet. He didn't even like me talking about it to people he knew. That was private stuff and needed to stay that way. He changed. He opened his eyes to the fact that life is short and we need to enjoy what we have today. Now he does the green hair, he talks to complete strangers; he even now bonds with strangers. He even told me to quit sugar coating his updates. There are still a few things I will not post... Mostly my fears and what I would say is personal stuff.
I guess what I am trying to say is normal is what we make it. Yes, I am scared every single day with Michael. I read other updates and hear of those that are done; just doing scans every 3 months. I see those who have relapses and relapses. I see those parents hanging on to every last moment with their babies. What is in store for Michael and me, only God knows and we have accepted that and we live each day filled with love and laughter. This year long battle has not been easy on us at all.”
TO ALL THE FRIENDS OUT THERE:
(Please feel free to copy and paste to your pages) Cancer is an extremely ugly disease. You must understand that this will be a part of our lives FOREVER. Even after treatment, we are not in the clear. We have scans every 3 months. This cancer can and will come back at anytime. Some of these men will never be the same. They can not work. But they are our men and we will stand by them and support them with or without you. I am sure some of you are tired of hearing the same ole’ thing about your friend and begin to distance yourselves. Please do something little to show you still care. The little things are the greatest things.
Cook a dinner for the family. Give a small gift card. Do you know a $25 dollar gift card to anywhere would mean to world to some. Offer a great big hug and a shoulder to cry on, yes you heard it all but a good cry for us will give us the strength to continue to move. To those with little ones, offer to watch them for a few hours. Just a few hours would be the world. Take the wife out for a nice manicure and pedicure. These don’t cost much. For him, take him fishing or take him out for a fun man’s night out. Yes, we might worry, but at least you are showing him you are still there. There are many other little things you can do. Yes, it does not help with the financial burdens we are suffering, but it does still show you care.
I have heard many say well try to do fundraisers or establish a medical fund. Some are better at doing this than others. Some of us don’t even know how to start these. And as the caregiver and patient, we sometimes have too much on our plates to do this. So as a friend, if you are good with this in anyway, offer that assistance to the family. Or get a group of friends together and come up with the ideas.
Ok, I will stop for now. As always, please continue to pray for all our beautiful sarcoma warriors. They all need our extra prayers. We love each of them and we need to continue to lift them up. Also, please continue to pray for a cure. And thank you once again for all the prayers and words of encouragement from everyone. We love all of you!!!!
Melodie
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