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
Sunday, January 10, 2010
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
Friday, December 18, 2009
HAPPY BIRTHDAY SWEETIE!!!! ~
First and most important ~ today is Michael’s 40th birthday. So…
HAPPY 40th BIRTHDAY MICHAEL!!!! I LOVE YOU!!!!
Sorry for not updating in a while. I just don’t know where the time goes. Michael has been doing OK. After we did get home from Kansas City, it took Michael a few weeks to recover. It took about 2 weeks for him to get his pain back under control. Now he’s back to tolerating it.
We had a quiet Thanksgiving at home. Right after that, Michael caught a cold which took quite a while for him to get over. I took him to his primary care doctor and he put him on antibiotics to help him get over it. Thankfully it didn’t go into his lungs.
He is still getting those headaches. Some days the headaches keep him in bed all day. Other than that, he’s doing pretty good. His hair is growing in. As he said, he has more on his face now then on the top of his head.
Going to keep this short, I will try to update again this weekend. Please 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. 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 all of you!!
*Hugs*
Melodie
HAPPY 40th BIRTHDAY MICHAEL!!!! I LOVE YOU!!!!
Sorry for not updating in a while. I just don’t know where the time goes. Michael has been doing OK. After we did get home from Kansas City, it took Michael a few weeks to recover. It took about 2 weeks for him to get his pain back under control. Now he’s back to tolerating it.
We had a quiet Thanksgiving at home. Right after that, Michael caught a cold which took quite a while for him to get over. I took him to his primary care doctor and he put him on antibiotics to help him get over it. Thankfully it didn’t go into his lungs.
He is still getting those headaches. Some days the headaches keep him in bed all day. Other than that, he’s doing pretty good. His hair is growing in. As he said, he has more on his face now then on the top of his head.
Going to keep this short, I will try to update again this weekend. Please 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. 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 all of you!!
*Hugs*
Melodie
Monday, November 16, 2009
The HOPES for Michael Celebration ~
First, I am so sorry for not updating sooner. I haven’t had much time to stop. It’s funny how things can pile up at work when you take vacation time.
Michael enjoyed every minute of his entire extended weekend in Kansas City. We left Texas late Wednesday night, arriving in Kansas City mid Thursday morning. Thursday, Michael slept most of the day. He was extremely sore from the ride up. We did stop every two hours for him to stretch. You can tell he is having pain when he takes his meds without a fight. He has taken pain meds more in the past 1 ½ weeks than in the past 6 months. Friday we just stayed at his friend’s house allowing him to rest up for Saturday.
Saturday, we had a fabulous time at Michael’s celebration. We have to thank everyone from the bottom of our hearts who took the time to show up. It meant a lot to Michael, Rebbecca, and I. We had a great turnout. We had close to 50 people show up I am guessing, I lost count. Even though many of you were not there, we did feel your spirit with us.
We had a chance to spend time with family, some we hadn’t seen in many years and a few of my family that had never had a chance to meet Michael but had been following his journey. We also had a chance to catch up with some old friends from our school days (we won’t say how many years that goes back, just remember our kids have already graduated high school). We also had a chance to meet some online friends for the first time. We have known them online for the past 3 years and they have been so supportive of Michael, it was nice to put a face to the name finally and give them a big hug for their support. We do have a few more we will be meeting up with in the very near future.
Sunday we spent the afternoon with family watching the NASCAR race in Texas. It’s kind of ironic, to watch the NASCAR race in Texas from Kansas City. After that, we went back to his friends for a nice cookout. Monday afternoon we headed back to Texas arriving home around midnight. He did say he would like to make the trip again soon. We didn’t have enough time to spend with everyone the way we wanted to. Maybe we can again after I have more vacation time built up at work after the first of the year.
It was nice to be away for the weekend. The weather in Kansas City was absolutely beautiful with mid 70’s the entire time we were there. Yes, ya’ll are welcome for us bringing the gorgeous weather up with us. We hadn’t been back to Kansas City (that is where we both grew up) in 5 years. Some things had changed, some hadn’t. It was nice to spend time with family and friends. And it was GREAT to see Michael smile. Even though he was in extreme pain, I think he has a smile on his face the entire time. Once we got home, he pretty much stayed in bed for 3 days and stayed on his pain meds. He started moving around more by this weekend.
Even though we have celebrated Michael kicking this cancer in the butt, there are many others still suffering. Yesterday, we lost another beautiful angel to this dreaded disease. Please pray for her family as they have to deal with her loss. It breaks my heart to hear of us losing these beautiful warriors. We have a few others that need our prayers. Please continue to pray for these sons, daughters, mothers, fathers, husbands, and wives who are suffering from this dreaded disease. And continue to pray for their family, that God grant them the strength needed to make it through their journey.
*Hugs*
Melodie
Friday, November 6, 2009
Kansas City ~
Hi Everyone!!~
Sorry for not updating lately. This will be short but I will update much more Sunday after Michael’s big Celebration.
We have been busy trying to get the final plans in place to get Michael to Kansas City. He is doing OK. He is still getting those headaches and still gets tired real easy. It has been nice not having to go to the doctor’s office every week or going to the hospital for treatments.
We left Texas around 11:00 Wednesday evening. Michael is one that loves to travel at night. This is something we have always done since the kids were little and now that they are grown, we will love to travel at night. We did stop every 2 hours to allow him to get out and move. We were real worried about how his back would take that long traveling. We made it to his friend’s house in Kansas City around 9:30 – 10:00 yesterday morning. We did make it in pretty good time. Of course we slept on and off most of the day. Michael is sore, but nothing we can’t handle.
Today, not real sure what the day will bring, but tomorrow…
Everyone that is in or around Kansas City need to come out to Big Q Bar-B-Que located at 2117 S. 34th Street, Kansas City, KS. We will be there tomorrow from 5:00 pm – 9:00 pm. The more the merrier. Nothing better than good BBQ, good beer, great company, and of course, Celebrating Life with Michael!! Hope to see everyone there. Of course the camera will be out so I will post pictures Sunday morning.
Please continue to keep all these beautiful warriors and their loved ones in your thoughts and prayers. Many are still fighting this dreaded disease.
Love ~
Melodie
Sorry for not updating lately. This will be short but I will update much more Sunday after Michael’s big Celebration.
We have been busy trying to get the final plans in place to get Michael to Kansas City. He is doing OK. He is still getting those headaches and still gets tired real easy. It has been nice not having to go to the doctor’s office every week or going to the hospital for treatments.
We left Texas around 11:00 Wednesday evening. Michael is one that loves to travel at night. This is something we have always done since the kids were little and now that they are grown, we will love to travel at night. We did stop every 2 hours to allow him to get out and move. We were real worried about how his back would take that long traveling. We made it to his friend’s house in Kansas City around 9:30 – 10:00 yesterday morning. We did make it in pretty good time. Of course we slept on and off most of the day. Michael is sore, but nothing we can’t handle.
Today, not real sure what the day will bring, but tomorrow…
Everyone that is in or around Kansas City need to come out to Big Q Bar-B-Que located at 2117 S. 34th Street, Kansas City, KS. We will be there tomorrow from 5:00 pm – 9:00 pm. The more the merrier. Nothing better than good BBQ, good beer, great company, and of course, Celebrating Life with Michael!! Hope to see everyone there. Of course the camera will be out so I will post pictures Sunday morning.
Please continue to keep all these beautiful warriors and their loved ones in your thoughts and prayers. Many are still fighting this dreaded disease.
Love ~
Melodie
Thursday, October 15, 2009
And the Word of the Day is………
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
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
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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