This is a quick update on how Dusty is feeling and where we are with our treatments.
Dusty has completely stopped responding to chemotherapy. There are no more options to try. We got accepted into a phase one clinical trial at MD Anderson. We were ecstatic to say the least. It gave us hope again. Hope that we so desperately needed. Dusty has continued to lose weight and is now down about 75 lbs. (at least he had the weight to lose but now he is getting below healthy). He can't eat and can't swallow. We found out that he does have a metastasis that has spread to his right lung but they are not concerned about it at this time because it has not changed in ten months. His spirits have been lifted with this clinical trial. We are hoping and praying for results. We should know February 28 if it is working.
At first our insurance denied the clinical trial, it was the worst beating that we've taken so far. We thought it was the first chisel in his tombstone. We were desperate. After three days of being sick and unable to focus on anything in life, we got the call that Dusty's insurance came through for the trial and they would cover it. AAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!
We have had many ups and downs through this but this was by far the biggest!
Dusty and my dad left for Houston Sunday, February 3. Dusty passed all his pre-test and met with the doctor on Tuesday, February 5. He starts the clinical trial on Thursday, February 7. He will be taking 1000 mg. of a chemo drug that is in trial. He takes it daily. They don't know the side effects yet but know that it does cause fatigue. Dusty will come home Saturday. Yay!
He has to travel back and forth to Houston about five times a month for the next 2.5 months.
We are still accepting donations and/or sky miles or hotel points.
Photos taken by Jessica V Photography:
http://www.jessicavphotography.com/index.php/2013/01/30/augusta-ga-family-photographer-hayden-family/
Wednesday, February 6, 2013
Monday, December 10, 2012
Old day's medicine
I'm sorry that i haven't blogged in a long time. I've been busy with life. We have had many ups and downs through the last few weeks. I want to give everyone a quick update.
In Houston Dusty had a lump arise. We had the oncologist's PA look at it and she thought that it was a busted blood vessel and nothing to worry about. Well in October we noticed that it had tripled in size. We showed our oncologist here and he said it doesn't look like anything to worry about but we should have it removed to be sure. We had it removed in November. The pathology came back as positive for adno cell carcinoma (same cancer that was in his esophagus). The doctor was very concerned that his cancer had spread from his esophagus and liver to his skin. It is one of the most unlikely places for it to spread. He was concerned where else the cancer stopped prior to ending in the skin. They put a rush on his MRI and CT scan. We were going to get the results on Thursday (12/6/12). It was the longest day of my life. I had the doctor call me to give me the news, not Dusty. I can handle news better and absorb it before relaying the news. Thursday I waited for my phone to ring. My stomach was in knots. I called multiple times and the nurse said the results are on his desk and he will call me after 5:00 when he is done seeing patients. Should I just show up? At 5:30 Elaine and I left the office, thinking that he had forgotten to call me. On the way to pick my children up from daycare, my phone rings. I pulled into daycare and parked the car. Our doctor said, "Well, it's not what we wanted. His tumor in his liver has tripled in two months." My heart stopped. "What does this mean?" He said, "Dusty's cancer is very aggressive and is beating the chemo. With the amount of chemo that he is receiving, his cancer should be shrinking. The fact that it is tripling, means the chemo is not working." I asked if the cancer has spread to any other organs, he said no but there are a few smaller tumors in the liver. I was at a loss. At this point, Elaine had loaded her kids up and was sitting next to me in the car. She text my mom to come get my kids for me. I asked the doctor what is next? He didn't have the answer. I asked about coming in and doing chemo on Monday (today, 12/10/12). He said there is no need to continue chemo because it is not working. At that moment reality sunk in; they are giving up, they are pulling the plug, my husband has no other options. The rest of the conversation was pretty much a blur. I said goodbye to Elaine and left. I drove around for thirty minutes. How do you go home and tell your husband that this is the end? How do you say, "The doctors don't have hope, but keep your head up???" Dusty called and wanted me to pick up some side items from Wife Saver because his sister had made his favorite meatballs for him. He was all excited and in a good mood. I couldn't tell him over the phone. I picked up the sides, knowing that we wouldn't have an appetite once I told Dusty the news. I circled the two cul-de-sacs in my neighborhood twice each. I called our best friend, Aaron, and asked him, "How do I tell Dusty that he is going to die?" This does not mean he is dying. I'll get to the "next steps". I pulled in the driveway and composed myself. I put my smile on and went in. When I walked through the door Dusty asked, "Where are the kids?" His face immediately changed and he said, "You talked to the doctor didn't you?" I rushed to him and held him tightly. I told him what the doctor said and he just looked like a lost child. What do you say or do for that? He had a feeling that it wasn't going to be good when it showed up in his skin. Honestly, we all did. We all thought it would be in all of his organs but it stayed contained in his liver. The location of the tumor is inoperable and they can't radiate his liver. The amount of radiation it would take would kill the liver before it killed the tumor. Your liver does regenerate but at a slower pace than the tumor is growing. It won't work. Again, feels like there is no answer.
"NEXT STEPS"
1. MD Anderson is working on a clinical trial that will genetically code his tumor. If they can find the gene that is creating that tumor, they can "turn it off" with hormones and stop the cancer from spreading. They are in the process of "growing" his tumor and testing for this particular gene. Only 25-40% of people express this gene but if Dusty does, it will be a game changer (Doctor's words). So, for now, we are hoping and praying for Dusty to have this gene.
2. We are going to talk with our oncologist in Houston about another chemo cycle. We have been on the newest, most advanced chemos but they are thinking about putting Dusty on a chemo cycle that they used to use. "Old day's medicine". The doctor said he would only do a couple of cycles of this chemo and re-scan Dusty to see if it is working. These chemos will make him very sick (like chemo in the old days) and he said at some point you have to weigh out quality of life versus quantity of life. Dusty said, "Please don't give up on me." The doctor said he wouldn't but if the chemo does not work, he doesn't need to be sick on it.
In Houston Dusty had a lump arise. We had the oncologist's PA look at it and she thought that it was a busted blood vessel and nothing to worry about. Well in October we noticed that it had tripled in size. We showed our oncologist here and he said it doesn't look like anything to worry about but we should have it removed to be sure. We had it removed in November. The pathology came back as positive for adno cell carcinoma (same cancer that was in his esophagus). The doctor was very concerned that his cancer had spread from his esophagus and liver to his skin. It is one of the most unlikely places for it to spread. He was concerned where else the cancer stopped prior to ending in the skin. They put a rush on his MRI and CT scan. We were going to get the results on Thursday (12/6/12). It was the longest day of my life. I had the doctor call me to give me the news, not Dusty. I can handle news better and absorb it before relaying the news. Thursday I waited for my phone to ring. My stomach was in knots. I called multiple times and the nurse said the results are on his desk and he will call me after 5:00 when he is done seeing patients. Should I just show up? At 5:30 Elaine and I left the office, thinking that he had forgotten to call me. On the way to pick my children up from daycare, my phone rings. I pulled into daycare and parked the car. Our doctor said, "Well, it's not what we wanted. His tumor in his liver has tripled in two months." My heart stopped. "What does this mean?" He said, "Dusty's cancer is very aggressive and is beating the chemo. With the amount of chemo that he is receiving, his cancer should be shrinking. The fact that it is tripling, means the chemo is not working." I asked if the cancer has spread to any other organs, he said no but there are a few smaller tumors in the liver. I was at a loss. At this point, Elaine had loaded her kids up and was sitting next to me in the car. She text my mom to come get my kids for me. I asked the doctor what is next? He didn't have the answer. I asked about coming in and doing chemo on Monday (today, 12/10/12). He said there is no need to continue chemo because it is not working. At that moment reality sunk in; they are giving up, they are pulling the plug, my husband has no other options. The rest of the conversation was pretty much a blur. I said goodbye to Elaine and left. I drove around for thirty minutes. How do you go home and tell your husband that this is the end? How do you say, "The doctors don't have hope, but keep your head up???" Dusty called and wanted me to pick up some side items from Wife Saver because his sister had made his favorite meatballs for him. He was all excited and in a good mood. I couldn't tell him over the phone. I picked up the sides, knowing that we wouldn't have an appetite once I told Dusty the news. I circled the two cul-de-sacs in my neighborhood twice each. I called our best friend, Aaron, and asked him, "How do I tell Dusty that he is going to die?" This does not mean he is dying. I'll get to the "next steps". I pulled in the driveway and composed myself. I put my smile on and went in. When I walked through the door Dusty asked, "Where are the kids?" His face immediately changed and he said, "You talked to the doctor didn't you?" I rushed to him and held him tightly. I told him what the doctor said and he just looked like a lost child. What do you say or do for that? He had a feeling that it wasn't going to be good when it showed up in his skin. Honestly, we all did. We all thought it would be in all of his organs but it stayed contained in his liver. The location of the tumor is inoperable and they can't radiate his liver. The amount of radiation it would take would kill the liver before it killed the tumor. Your liver does regenerate but at a slower pace than the tumor is growing. It won't work. Again, feels like there is no answer.
"NEXT STEPS"
1. MD Anderson is working on a clinical trial that will genetically code his tumor. If they can find the gene that is creating that tumor, they can "turn it off" with hormones and stop the cancer from spreading. They are in the process of "growing" his tumor and testing for this particular gene. Only 25-40% of people express this gene but if Dusty does, it will be a game changer (Doctor's words). So, for now, we are hoping and praying for Dusty to have this gene.
2. We are going to talk with our oncologist in Houston about another chemo cycle. We have been on the newest, most advanced chemos but they are thinking about putting Dusty on a chemo cycle that they used to use. "Old day's medicine". The doctor said he would only do a couple of cycles of this chemo and re-scan Dusty to see if it is working. These chemos will make him very sick (like chemo in the old days) and he said at some point you have to weigh out quality of life versus quantity of life. Dusty said, "Please don't give up on me." The doctor said he wouldn't but if the chemo does not work, he doesn't need to be sick on it.
Tuesday, October 2, 2012
Chutes and Ladders
The plane ride to Houston was the hardest one that we have had yet. We couldn't sleep, constantly fidgeted, and worried the whole time. Nothing helped, not even our anxiety medicine. We arrived at Houston Hobby at 11:25 pm and caught the shuttle to the Rotary House (hospital hotel). We were both very anxious and couldn't sleep. We decided to go on a walk around the hospital to get tired. We went to Cafe 24/7 and got some chocolate milk and pasta salad (great combo, I know). We went back to our room and finally fell asleep. We both tossed and turned and gave up on sleeping in at about 7:30 am. Dusty's appointment for his MRI was not until 10:00. My dad arrived at 9:30. We walked over to the hospital and met my dad and signed Dusty in. His MRI would take about an hour so Dad and I walked around MD Anderson. I showed dad the MD Anderson Universe. He was amazed at how large it is, and how much walking was required! At 11:15 dad and I arrived back at the waiting room in the MRI center. Dusty texted me as we walked through the door that he was still in the waiting room in the back and hadn't started. Ugh, more waiting. Dad and I decided to go get lunch and then went back to the room to relax. Dusty called me around 1:30 and was done. We rushed to him. We went straight to the surgeon's office for our next appointment, pre-op and the reading the results of the MRI. We were so nervous. Dad was doing what he always does and trying to make us feel good by joking around. They called us back. The PA came in and talked with us about what the typical protocol is for the pre-op. She also said that there was a spot that showed up on the PET Scan, and that she and the surgeon looked it over and didn't think much of it but knows that our oncologist likes to be thorough. She said she feels it is just precaution. Dusty, Dad, and I felt a huge sense of relief. We started to feel positive about the entire situation. Just then, the PA said the results posted and she left the room to read them. Dusty was shaking. He just kept rocking back and forth and shaking his legs. I could see that he was about to come unglued. I wasn't feeling this way. For some reason, I had a lot of hope and pressure lift from me. I wasn't nervous. I knew we were going to get good news. I was pumped! I told Dusty, "It's going to be okay!" The PA came in with a grimace look on her face but a perky voice. She said, "Well unfortunately..." I thought she was going to say, "You're having surgery Thursday." But she didn't. She said, "Well, unfortunately there were two spots that showed up on your liver and an enlarged lymph node." Silence hit the room. We were at a lost. I thought is was a joke from the tone of her voice. It took minutes to settle in. Dusty just looked lost. I've never seen such defeat in someone's face. Dusty just kept looking at the floor and had his hands over his head. He asked the dreaded question, "How long am I going to live?" She said that is not the question to ask but that is for the doctors to answer. The odds against esophageal cancer are so low. But, she remained positive. She sent the surgeon in. He said that there are a lot of treatment plans out there and hopefully Dusty can be treated with chemo and it get rid of the tumors in his liver and lymph nodes and then he will qualify for the surgery again. I said, "He is young and the liver regenerates, why can't you do the surgery and cut out the section of the liver?" He said, "Because there are cancer seeds now that are spreading and if you only try cutting them out you will not get the micro cells that you can't see. You must treat with chemo to get rid of them and then possibly do radiation again if in the end there is only one tumor left." I was losing it. I tried so hard to be strong for Dusty. I held everything in that I could when all I wanted to do was get on my knees and scream and curse to God, Why, Why WHY???? We have done everything right, Dusty lives such a wholesome life. He is a good person and does not deserve this. Cancer sucks. The surgeon and Dusty had a heart to heart on what we can do. He said he sees miracles all the time and that are unexplained. Does this mean the odds are that bad that it will only be a miracle? I'm a math person so I follow stats and odds, but I'm also a spiritual person and I believe in God and miracles. I just wish this didn't have to be such a miracle and more about odds. Dusty is a scientists and believes in the science, which is not necessarily a good thing. He knows the biology behind a lot of it and, let's face it, the biology behind stage 4 esophageal cancer sucks, but he also has faith. He has to, or we won't win. I need everyone to help lift Dusty's spirits and help him have faith and see that he can make this. This entire process has been like a grown up game of Chutes and Ladders. We almost make it up and then we slip and fall down. I just want to make it to the "winners squares".
Leaving the hospital we were back to the awkward silence. Dad didn't know what to say. He has not been with us to experience such let down. We on the other hand are used to it. But, not news like this. I mean, the surgeon actually gave the "5% survival rate" words. What do you say to that? You would think by now I would have the words but I don't. Dusty knows. We just look at each other and know what we are thinking. Silence is awkward but common. Dad did the best he could but nothing could cheer us up. Dad said, "we just keep going, we fight." But, after sliding down the ladder so many times it is hard. AGAIN, I'm giving Dusty a few days to sulk (and myself) and then it is back to the "kick ass" attitude that I have carried with me this entire time.
Leaving the hospital we were back to the awkward silence. Dad didn't know what to say. He has not been with us to experience such let down. We on the other hand are used to it. But, not news like this. I mean, the surgeon actually gave the "5% survival rate" words. What do you say to that? You would think by now I would have the words but I don't. Dusty knows. We just look at each other and know what we are thinking. Silence is awkward but common. Dad did the best he could but nothing could cheer us up. Dad said, "we just keep going, we fight." But, after sliding down the ladder so many times it is hard. AGAIN, I'm giving Dusty a few days to sulk (and myself) and then it is back to the "kick ass" attitude that I have carried with me this entire time.
Friday, September 28, 2012
Reason for living
After Dusty's endoscopy on Wednesday we got to talk to the doctor that does the endoscopies. He said it looked like Dusty had a good response to the chemo and radiation. We saw the pictures and it looked like the tumor in his esophagus had shrunk about 75%. In the beginning when Dusty had two months of chemo without radiation, the treatment had almost made the lymph nod disappear. So, with adding more chemo and radiation, it had to work. Right?
We woke up Thursday, excited, ready to find out great news. I know all the praying, love, support, and bonds that we have received had to make this work. God, please let it have work. On the way to the hospital Dusty and I were singing along with the radio, laughing, in good spirits. When we got to the oncologist office there were a lot of people waiting. Aw man, I want to know. We were as giddy as the day we got married. So pumped, excited, a little scared but knew, it was going to be good. When you're waiting for live or die news, you can't help but to start to think the worst. My legs started shaking. I told Dusty I feel like something is wrong because it is taking so long. I thought the doctors were trying to prepare to tell us bad news. He said, "No, they are just busy." I hope, I hope, I hope. They call us back there. I'm pretty sure at this point my stomach is in my throat. She takes Dusty's vital and everything looked good. His blood pressure was low. I joked that if they took mine, they would admit me.
The RN sits down with us in the room and starts asking questions on how his recovery has been and how he is feeling mentally and physically. We brought up surgery and she danced around it. Umm, excuse me. We mentioned surgery. Aren't we here to discuss surgery? Why is she avoiding it? Dusty said, he noticed the tumor had shrunk in the PET scan. She said, "We'll get to that in a minute." NO, get to it NOW DAMNIT! I can feel Dusty starting to shake. Now we are both slipping. I felt like we were on honey I shrunk the kids and we were tinni tiny and she was talking in slow motion down to us. She said, "Something showed up in your liver." WWWHHHHHAAAAAATTTTTT? What? What? I don't think we heard her correctly. We asked multiple times. What she is talking about and what does this mean? She said it could be a tumor or radiation scaring. They need to do an MRI to determine if the cancer has spread. Well, I've been doing this long enough now to know that scars do not "glow" on a PET scan, cancer does. How can you mistake the two? I can feel Dusty giving up. He literally is giving up completely in his body language. I put my head in my hand and start to cry. I feel so bad for Dusty that I can't keep it together. It wasn't the news that I couldn't handle. It was Dusty losing hope. I asked, "If it is a tumor, will they do the surgery?" She said, "NO." I"m going to throw up on this lady. I asked what the next step would be and she said, "let's not jump to conclusion, we don't know anything yet." No we don't know anything yet, but we do know enough to be scared to death, literally. If the cancer has spread, it is stage 4. I'm not even going to go into that. You all know what that means. I begged her to get us in to do a MRI that day. They didn't have any openings. I said, "What if we just go sit there, will they fit us in?" She said, "No, everyone else here has to wait for answers, just like you." Bitch. They got us an appointment Tuesday. We meet with the surgeon for pre-op Tuesday afternoon. So, either he will say, "Yes, it is a "go", or No, we need to reevaluate."
Dusty was lost. He was ready to give up. He said, "If it is stage 4, I don't want to be on chemo the rest of my life until I die. I don't want to be a burden on anyone and I don't want people to watch me struggle and be sick." He said, "He doesn't want people to be relieved at his funeral, he wants them to mourn him." I let him have his hour of sorrow and then I said, "ENOUGH. You are no longer allowed to talk like this. You can't think that way. You have to fight. Your kids and I deserve that." He apologized and agreed to fight. And I apologized and agreed that he could give up if it comes to the day that he is living on morphine and has no control of his own body. Then, we went back to the old days of awkward silence. There really is nothing that you can say in this situation. We went back to Ashley's apartment, highly medicated, and held each other. No words needed in that moment. I knew what he was thinking and he knew what I was thinking.
It is now Friday, we are about to head to the airport to go home to our reason for continuing, OUR CHILDREN!
excuse my language, sometimes I just have to let it out.
We woke up Thursday, excited, ready to find out great news. I know all the praying, love, support, and bonds that we have received had to make this work. God, please let it have work. On the way to the hospital Dusty and I were singing along with the radio, laughing, in good spirits. When we got to the oncologist office there were a lot of people waiting. Aw man, I want to know. We were as giddy as the day we got married. So pumped, excited, a little scared but knew, it was going to be good. When you're waiting for live or die news, you can't help but to start to think the worst. My legs started shaking. I told Dusty I feel like something is wrong because it is taking so long. I thought the doctors were trying to prepare to tell us bad news. He said, "No, they are just busy." I hope, I hope, I hope. They call us back there. I'm pretty sure at this point my stomach is in my throat. She takes Dusty's vital and everything looked good. His blood pressure was low. I joked that if they took mine, they would admit me.
The RN sits down with us in the room and starts asking questions on how his recovery has been and how he is feeling mentally and physically. We brought up surgery and she danced around it. Umm, excuse me. We mentioned surgery. Aren't we here to discuss surgery? Why is she avoiding it? Dusty said, he noticed the tumor had shrunk in the PET scan. She said, "We'll get to that in a minute." NO, get to it NOW DAMNIT! I can feel Dusty starting to shake. Now we are both slipping. I felt like we were on honey I shrunk the kids and we were tinni tiny and she was talking in slow motion down to us. She said, "Something showed up in your liver." WWWHHHHHAAAAAATTTTTT? What? What? I don't think we heard her correctly. We asked multiple times. What she is talking about and what does this mean? She said it could be a tumor or radiation scaring. They need to do an MRI to determine if the cancer has spread. Well, I've been doing this long enough now to know that scars do not "glow" on a PET scan, cancer does. How can you mistake the two? I can feel Dusty giving up. He literally is giving up completely in his body language. I put my head in my hand and start to cry. I feel so bad for Dusty that I can't keep it together. It wasn't the news that I couldn't handle. It was Dusty losing hope. I asked, "If it is a tumor, will they do the surgery?" She said, "NO." I"m going to throw up on this lady. I asked what the next step would be and she said, "let's not jump to conclusion, we don't know anything yet." No we don't know anything yet, but we do know enough to be scared to death, literally. If the cancer has spread, it is stage 4. I'm not even going to go into that. You all know what that means. I begged her to get us in to do a MRI that day. They didn't have any openings. I said, "What if we just go sit there, will they fit us in?" She said, "No, everyone else here has to wait for answers, just like you." Bitch. They got us an appointment Tuesday. We meet with the surgeon for pre-op Tuesday afternoon. So, either he will say, "Yes, it is a "go", or No, we need to reevaluate."
Dusty was lost. He was ready to give up. He said, "If it is stage 4, I don't want to be on chemo the rest of my life until I die. I don't want to be a burden on anyone and I don't want people to watch me struggle and be sick." He said, "He doesn't want people to be relieved at his funeral, he wants them to mourn him." I let him have his hour of sorrow and then I said, "ENOUGH. You are no longer allowed to talk like this. You can't think that way. You have to fight. Your kids and I deserve that." He apologized and agreed to fight. And I apologized and agreed that he could give up if it comes to the day that he is living on morphine and has no control of his own body. Then, we went back to the old days of awkward silence. There really is nothing that you can say in this situation. We went back to Ashley's apartment, highly medicated, and held each other. No words needed in that moment. I knew what he was thinking and he knew what I was thinking.
It is now Friday, we are about to head to the airport to go home to our reason for continuing, OUR CHILDREN!
excuse my language, sometimes I just have to let it out.
Wednesday, September 26, 2012
All sounds too familiar
Dusty is currently in the operating room having an endoscopy done. His spirits are high and we are feeling positive. We haven't been able to read the doctor's body language or moods but today we should be able to get our first sense of results. We will get pictures from the endoscopy and will be able to compare them with the pictures of the tumors pre-treatment. I warned Dusty that the pictures may look worst than before because now he will have a lot of dead and burned tissue. But we should be able to tell from the doctor's response if there are any more tumors. But, trying not to jump to conclusions but it is hard.
While Dusty and I sat in our little curtain cubicle waiting to start fluids and take vitals, it is hard to not eaves drop on the other patients in the other cubicles. Everything we heard was so familiar. "I was diagnosed with Barret's Esophagus." "I had acid reflux for years." "I had a hard time swallowing." "I had chest pain." It was all so familiar. I just wanted to pull back the curtains and tell everyone that it will be okay. Dusty is proof. He made it through the treatments and is preparing for surgery. I remember being that couple in the curtain for the first time and being scared to death of what they were going to find.
Now, I'm sitting in the cafeteria waiting for Dusty to be finished and I'm eaves dropping again. There are two residence students sitting near me and talking about what they are going to focus on in their carreer. One said she wants to focus on gastro oncology. I seriously can't get away from it anywhere. She said her father passed away a year ago from esophageal cancer and since then, she knew her path. Where are my earbuds when I need them? She started telling her friend about the stages that they went through and his treatment. He started out as stage 2 (my heart dropped, Dusty is stage 3), but then when he came to MD Anderson, they found more tumors and he ended up being stage 4. I was relieved to hear that he passed from stage 4, not stage 2 or 3. Although, I feel for her and understand a little of what she went through.
Gotta run! Dusty should be done soon. I'll keep you all posted on how well we probe the doctor for answers. He can't give us much because that is the oncologist job, but I'm definitely going to try!
While Dusty and I sat in our little curtain cubicle waiting to start fluids and take vitals, it is hard to not eaves drop on the other patients in the other cubicles. Everything we heard was so familiar. "I was diagnosed with Barret's Esophagus." "I had acid reflux for years." "I had a hard time swallowing." "I had chest pain." It was all so familiar. I just wanted to pull back the curtains and tell everyone that it will be okay. Dusty is proof. He made it through the treatments and is preparing for surgery. I remember being that couple in the curtain for the first time and being scared to death of what they were going to find.
Now, I'm sitting in the cafeteria waiting for Dusty to be finished and I'm eaves dropping again. There are two residence students sitting near me and talking about what they are going to focus on in their carreer. One said she wants to focus on gastro oncology. I seriously can't get away from it anywhere. She said her father passed away a year ago from esophageal cancer and since then, she knew her path. Where are my earbuds when I need them? She started telling her friend about the stages that they went through and his treatment. He started out as stage 2 (my heart dropped, Dusty is stage 3), but then when he came to MD Anderson, they found more tumors and he ended up being stage 4. I was relieved to hear that he passed from stage 4, not stage 2 or 3. Although, I feel for her and understand a little of what she went through.
Gotta run! Dusty should be done soon. I'll keep you all posted on how well we probe the doctor for answers. He can't give us much because that is the oncologist job, but I'm definitely going to try!
Tuesday, September 25, 2012
Quick update on Dusty
I've been too busy to blog while in Augusta. Spending a lot of time with my kids, friends, family, and working. I have learned a lot about myself through this process. Dusty and I have the greatest friends and support group. You all are amazing. We have made many new connections and relationships that mean so much to us. But, we have also lost friends through this. It's sad to think that some of the people closest to you don't care enough to pick up a phone and call. We can't worry about bad relationships, only the ones that will continue to make us stronger.
The first two weeks that we were home were horrible. Dusty couldn't keep anything down and his body was losing the battle. He lost 18 lbs in two weeks bringing total weight loss to 43.2 lbs. He is so tiny. For him. The last week of radiation and the two weeks after were the worst part of our journey so far. It was very hard on Dusty. He felt terrible and was very alone. I had to go back to work and the kids were in school so Dusty was home alone all day. I was so tired in the evening from getting up at 6:45 every morning, getting showered and dressed, getting the kids their breakfast and dressed, taking the kids to school, working all day, coming home and cleaning house, going and picking up the kids from daycare, cooking dinner, feeding the kids, bathing the kids, and putting them to bed. EXHAUSTED! I felt bad for Dusty because he was so alone all day and wanted to hang out at night but I would pass out at 9:30 every night, which made him more lonely. Dusty slowing spiraled into a deep depression. All he had to do was sit there and think about cancer, all alone. He battled depression for a few more weeks and finally I convinced him, through the help of his sister and Dr. Wear, to take something for depression. Well, the medicine that he started taking made him nauseous and vomit. Back to this again? Everyone said this was normal so he started taking his anti-nausea medicine. A week later, it seems to be helping.
While at home we got to celebrate Reynolds' 6th bday! We had slumber party with five 5/6 year old boys. It was craziness but fun. I learned that 6 year old boys like Justin Bieber more than 13 year old girls. :) I have the videos to prove it! Today is Tuesday, September 25, Harland's 3rd birthday! I wish we could be with our baby boy but we have to take care of his daddy.
We are now back in Houston, getting PET/CT scans (Tuesday) and having an endoscopy with ultrasound (Wednesday). We meet with the oncologist Thursday for restaging. We are staying positive but in the back of our mind there is a little devil saying, "What if?" What if it didn't work? What if it spread? I'm staying very positive for Dusty but I'm also panicking inside. I believe in our doctors and I believe in medicine so I feel it worked but I can't help but to try to prepare myself for the worst. I have also developed a strong faith in God and the miracle of prayer. WE FEEL YOUR PRAYERS, KEEP THEM COMING. This week will determine the rest of our lives. It is so hard to deal with such a monster like cancer. IF there are any more tumors, or if the cancer "got smarter" and fought back against the chemo and radiation, they will not do surgery. His cancer will then be stage 4, inoperable/non-curable. Only treatable until the cancer wins. BUT, that is not the case! I believe that the medicine worked. It had to. There is no other option. We will know Thursday. I will keep you all posted.
Special thanks to Ashley Bridges for letting us stay at her apartment this week. Saving us $550. You're the greatest!
The first two weeks that we were home were horrible. Dusty couldn't keep anything down and his body was losing the battle. He lost 18 lbs in two weeks bringing total weight loss to 43.2 lbs. He is so tiny. For him. The last week of radiation and the two weeks after were the worst part of our journey so far. It was very hard on Dusty. He felt terrible and was very alone. I had to go back to work and the kids were in school so Dusty was home alone all day. I was so tired in the evening from getting up at 6:45 every morning, getting showered and dressed, getting the kids their breakfast and dressed, taking the kids to school, working all day, coming home and cleaning house, going and picking up the kids from daycare, cooking dinner, feeding the kids, bathing the kids, and putting them to bed. EXHAUSTED! I felt bad for Dusty because he was so alone all day and wanted to hang out at night but I would pass out at 9:30 every night, which made him more lonely. Dusty slowing spiraled into a deep depression. All he had to do was sit there and think about cancer, all alone. He battled depression for a few more weeks and finally I convinced him, through the help of his sister and Dr. Wear, to take something for depression. Well, the medicine that he started taking made him nauseous and vomit. Back to this again? Everyone said this was normal so he started taking his anti-nausea medicine. A week later, it seems to be helping.
While at home we got to celebrate Reynolds' 6th bday! We had slumber party with five 5/6 year old boys. It was craziness but fun. I learned that 6 year old boys like Justin Bieber more than 13 year old girls. :) I have the videos to prove it! Today is Tuesday, September 25, Harland's 3rd birthday! I wish we could be with our baby boy but we have to take care of his daddy.
We are now back in Houston, getting PET/CT scans (Tuesday) and having an endoscopy with ultrasound (Wednesday). We meet with the oncologist Thursday for restaging. We are staying positive but in the back of our mind there is a little devil saying, "What if?" What if it didn't work? What if it spread? I'm staying very positive for Dusty but I'm also panicking inside. I believe in our doctors and I believe in medicine so I feel it worked but I can't help but to try to prepare myself for the worst. I have also developed a strong faith in God and the miracle of prayer. WE FEEL YOUR PRAYERS, KEEP THEM COMING. This week will determine the rest of our lives. It is so hard to deal with such a monster like cancer. IF there are any more tumors, or if the cancer "got smarter" and fought back against the chemo and radiation, they will not do surgery. His cancer will then be stage 4, inoperable/non-curable. Only treatable until the cancer wins. BUT, that is not the case! I believe that the medicine worked. It had to. There is no other option. We will know Thursday. I will keep you all posted.
Special thanks to Ashley Bridges for letting us stay at her apartment this week. Saving us $550. You're the greatest!
Wednesday, September 12, 2012
Reunited and it feels so good!
The night before our last radiation we couldn't sleep. We were so anxious to get on the road and see our kids and be out of this nightmare. Neither of us slept. I couldn't get my mind to go to sleep. I didn't want to medicate since I would be driving the whole day. At 11:30 I decided to turn on the TV to get my mind to stop wondering. I fell asleep at about 12:15. I woke to Dusty getting sick at 2:00 and from that point forward, I watched the clock. I watched the clock until 4:15. We got up at 5:30 to be at the hospital for Dusty's LAST radiation at 6:00. Emotions ran through both of us. The last two weeks had been so difficult. Dusty was very sick, in pain, not eating, and very depressed. The stupid car issue didn't help. They called him back. He did his last treatment and then called me back to watch him ring the victory bell. It was a moment that I would never forget. Dusty is the strongest person that I know and has only shed a few tears throughout this process, but he didn't hold back on this morning. You could see the joy in his eyes that this was over. He did great!
There was no way that I could drive so we went back to the hotel and got some much needed sleep. We slept until 11:00 then got on the road.
The drive home was horrible. It was long and silent. Dusty felt horrible. I kept having to pull over so that he could get sick. It was awful. He couldn't get comfortable and had terrible leg pains. We stopped in Mobile, AL and stayed the night. Dusty continued to throw everything up; water, food, medicine, everything. It was so hard to watch. I thought he was going to get out easy because he was supposed to get sick during week 2.5 and 3 but he didn't. He got VERY sick during week 5.5. But, hey, at least he wasn't sick that whole period. There wouldn't be anything left of Dusty if he had gotten sick in week 3. At this point, leaving Houston, Dusty had lost about 22 lbs. Not too bad, at least he had the weight to loose. If he was a tiny guy I don't know what we would have done.
I drove so fast. When we hit I-20 and I could feel home. I turned on Metallica and set my cruise control on 90. I started to feel the emotions coming out. I started to cry. Dusty asked me what was wrong and I said, "I don't know, I guess I'm just glad this is almost over." For me, it wasn't over until I got my husband home. We pulled into my neighborhood and turned the corner to see my house up the street. I saw Chris Wheeler's car, Aaron's car, and my Aunt's car. I started bawling!! SOBBING! I could feel all the stress and pressure leave me. It was like I was running a marathon and just handed off the baton. I now had help. I had our friends. I had our family. I was no longer alone trying to take care of Dusty and hold the weight of the World by myself. Oh, relief. I can't explain it. I slammed my car in park and jumped out. I felt like my legs were going to collapse underneath me. I was shaking uncontrollably. I saw my mom's car coming up the street and knew my boys were inside. Reynolds knew we were coming home but Harland is still too young to understand. I saw Reynolds smile so big and he jumped out and hugged Dusty so tight. I could see it in Reynolds that he was holding back. Such a cool cat! Then, I made eye contact with Harland, he had his hand over his mouth and his eyes were as big as silver dollars. He immediately started trying to pull off his car seat belt. Dusty was on that side of the car and pulled Harland out. He wouldn't take his eyes off me and I ran over to him. He hugged me so tightly that I didn't think I was ever going to get him off! And I was fine with it. I was so happy to be home with my family and friends. Elaine and Joey showed up and I thought I was never going to let her go! I missed my friend so much. She is my voice when I can't talk and my strength when I can't hold on. My wonderful friends had a cleaning party at our house before we came home. Our house was so clean and decorated with ballons and welcome home banners! Thank you Justin and Laura, Eddie and Heather, Chris and Ann, and Aaron! You guys are the best!
There was no way that I could drive so we went back to the hotel and got some much needed sleep. We slept until 11:00 then got on the road.
The drive home was horrible. It was long and silent. Dusty felt horrible. I kept having to pull over so that he could get sick. It was awful. He couldn't get comfortable and had terrible leg pains. We stopped in Mobile, AL and stayed the night. Dusty continued to throw everything up; water, food, medicine, everything. It was so hard to watch. I thought he was going to get out easy because he was supposed to get sick during week 2.5 and 3 but he didn't. He got VERY sick during week 5.5. But, hey, at least he wasn't sick that whole period. There wouldn't be anything left of Dusty if he had gotten sick in week 3. At this point, leaving Houston, Dusty had lost about 22 lbs. Not too bad, at least he had the weight to loose. If he was a tiny guy I don't know what we would have done.
I drove so fast. When we hit I-20 and I could feel home. I turned on Metallica and set my cruise control on 90. I started to feel the emotions coming out. I started to cry. Dusty asked me what was wrong and I said, "I don't know, I guess I'm just glad this is almost over." For me, it wasn't over until I got my husband home. We pulled into my neighborhood and turned the corner to see my house up the street. I saw Chris Wheeler's car, Aaron's car, and my Aunt's car. I started bawling!! SOBBING! I could feel all the stress and pressure leave me. It was like I was running a marathon and just handed off the baton. I now had help. I had our friends. I had our family. I was no longer alone trying to take care of Dusty and hold the weight of the World by myself. Oh, relief. I can't explain it. I slammed my car in park and jumped out. I felt like my legs were going to collapse underneath me. I was shaking uncontrollably. I saw my mom's car coming up the street and knew my boys were inside. Reynolds knew we were coming home but Harland is still too young to understand. I saw Reynolds smile so big and he jumped out and hugged Dusty so tight. I could see it in Reynolds that he was holding back. Such a cool cat! Then, I made eye contact with Harland, he had his hand over his mouth and his eyes were as big as silver dollars. He immediately started trying to pull off his car seat belt. Dusty was on that side of the car and pulled Harland out. He wouldn't take his eyes off me and I ran over to him. He hugged me so tightly that I didn't think I was ever going to get him off! And I was fine with it. I was so happy to be home with my family and friends. Elaine and Joey showed up and I thought I was never going to let her go! I missed my friend so much. She is my voice when I can't talk and my strength when I can't hold on. My wonderful friends had a cleaning party at our house before we came home. Our house was so clean and decorated with ballons and welcome home banners! Thank you Justin and Laura, Eddie and Heather, Chris and Ann, and Aaron! You guys are the best!
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