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.
Friday, September 28, 2012
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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