Radiation hasn't started yet. Justin went for his appointment this morning and they realized that things weren't lining up the way they should. He was sent to a new facility in Farmington for another CT mapping session. Hopefully it will be correct. He is set to start on Wednesday morning. I think we are just anxious for them to get it right, then when Justin actually begins.
Justin's radiation appointments are Monday through Friday at 7:00 am. Yes, in the morning! Justin actually wanted this appointment so that his work day wouldn't be interrupted. For all of us that know Justin, getting up early in the morning isn't the easy thing for him to do! But hopefully this early time will work for him.
I promise to keep everyone posted once radiation begins.
Monday, September 29, 2008
Thursday, September 25, 2008
Bike Rides
Radiation is set to go this Monday. We hope. There have been some scheduling conflicts. It's no big deal, but we keep "preparing" for it to start, and then the time or day gets changed. Oh well. Justin is glad to have an extra weekend.
I just have to report! Today Justin took an 8 mile bike ride. Last week it was 10 miles. How many of us can honestly say that we have done that? So I guess it is accurate to report that Justin is feeling well. He says this is the best he has felt in over a year. So great to hear that.
I just have to report! Today Justin took an 8 mile bike ride. Last week it was 10 miles. How many of us can honestly say that we have done that? So I guess it is accurate to report that Justin is feeling well. He says this is the best he has felt in over a year. So great to hear that.
Friday, September 12, 2008
The Swing of Things
I feel bad I haven't updated our blog in a while. Really a lot has been going on. But all good things. We have been trying to adjust to getting things in our life back in order. I decided not to return to teaching this year. It wasn't an easy decision. Thanks to all that listened to me go back and forth for about the last 6 or 7 months. I think I was just finally relieved to have made a decision and didn't have to think about it anymore.
As sad as it was to leave teaching, I have had another opportunity bloom that really has been there my entire life; cheesecake! Yes, I am doing some part time work for my dad with his store. Justin has always wanted to get into the "cheesecake business" [and me, for that matter], but we just didn't know how to take the leap. We felt this was the best time for us and are excited at the possibilities down the road. For now, I am grateful that my dad [well, and my mom too!] have given me this opportunity to make it possible to breathe. I was feeling very suffocated by trying to balance work, Justin, doctors, scans, insurance bills, referrals, Jackson...the list continues. Once the summer hit, I felt a bit of relief and knew that I needed to make a change. Teaching is way more then "getting your summers off, plus holidays," and my heart was just not in it anymore.
Justin is quite the opposite of me. He has jumped into work and hasn't missed a beat. Jackson and I barely saw him for dinner this week he was working so much. And he loves being able to give 100 % again.
On Monday, Justin will have a special CT scan and a simulation with his radiation oncologist to get ready for radiation. We are still not sure when he will start, how much radiation he will get, nor for how long. I am sure we will have answers on Monday. We are also hoping that radiation is a "piece of cake" compared to chemo. Everyone keeps saying this to him, but we have heard of some unpleasant side effects. Deep down, I think we just hope that Justin will continue to feel great like he does now!
As sad as it was to leave teaching, I have had another opportunity bloom that really has been there my entire life; cheesecake! Yes, I am doing some part time work for my dad with his store. Justin has always wanted to get into the "cheesecake business" [and me, for that matter], but we just didn't know how to take the leap. We felt this was the best time for us and are excited at the possibilities down the road. For now, I am grateful that my dad [well, and my mom too!] have given me this opportunity to make it possible to breathe. I was feeling very suffocated by trying to balance work, Justin, doctors, scans, insurance bills, referrals, Jackson...the list continues. Once the summer hit, I felt a bit of relief and knew that I needed to make a change. Teaching is way more then "getting your summers off, plus holidays," and my heart was just not in it anymore.
Justin is quite the opposite of me. He has jumped into work and hasn't missed a beat. Jackson and I barely saw him for dinner this week he was working so much. And he loves being able to give 100 % again.
On Monday, Justin will have a special CT scan and a simulation with his radiation oncologist to get ready for radiation. We are still not sure when he will start, how much radiation he will get, nor for how long. I am sure we will have answers on Monday. We are also hoping that radiation is a "piece of cake" compared to chemo. Everyone keeps saying this to him, but we have heard of some unpleasant side effects. Deep down, I think we just hope that Justin will continue to feel great like he does now!
Tuesday, September 2, 2008
Light the Night
The Leukemia-Lymphoma society holds an annual event titled "Light the Night Walk." The walks take place in pretty much every city throughout the year. Feel free to check out the links for more information.
The reason I bring this up is because our friends, Maureen and Stephen, are participating in the walk in Raleigh Saturday, September 13th. I met Maureen through an online support group for Hodgkin's Lymphoma. She and Stephen have been a great source of support! Stephen was diagnosed around the same time as Justin. He just finished his last treatment of AVBD today. Go Stephen!
Maureen and Stephen have kindly made a ribbon in honor of Justin, as well as other family members they know who have been diagnosed with a blood cancer. The gesture has completely blown our minds! So I am putting a link to their website and hoping that if anyone had thought about possibly donating money to the Society, this might be a great way to do it.
Keep posted. Justin and I plan on participating in the walk here in Michigan next year.
The Fun Bunch
And thanks again to the Ragons! It is really difficult to put into words just what this has meant to us!!!
The reason I bring this up is because our friends, Maureen and Stephen, are participating in the walk in Raleigh Saturday, September 13th. I met Maureen through an online support group for Hodgkin's Lymphoma. She and Stephen have been a great source of support! Stephen was diagnosed around the same time as Justin. He just finished his last treatment of AVBD today. Go Stephen!
Maureen and Stephen have kindly made a ribbon in honor of Justin, as well as other family members they know who have been diagnosed with a blood cancer. The gesture has completely blown our minds! So I am putting a link to their website and hoping that if anyone had thought about possibly donating money to the Society, this might be a great way to do it.
Keep posted. Justin and I plan on participating in the walk here in Michigan next year.
The Fun Bunch
And thanks again to the Ragons! It is really difficult to put into words just what this has meant to us!!!
Monday, September 1, 2008
The Rollercoaster of Life
Oh boy! We were blessed with some great news this past Friday. Justin received a call from U of M. After careful review of his initial PET scan, mid-way, and last scan, they have concluded that the uptake is NOT in his original mass. All of his masses show no uptake. This is a good thing. They will still keep an eye on the area and whatever it is will hopefully resolve itself by his next exam.
So what this means is NO MORE CHEMO!!! Again. It was a bummer that he did have a #13 treatment. I don't think Adam Hubner's wedding was as fun as it could have been, but we had a GREAT time. And his energy returned by Monday. We were able to enjoy a MUCH needed vacation. Once Justin got the call on Friday, I really saw him back to 100%. He said he feels 90% because his upper body doesn't feel as strong as he would like it to. Maybe he'll start lifting weights.
Onto the plans for radiation. We are not sure when he will be able to begin since he has had chemotherapy recently. They usually say 4 weeks to let your body heal. We will find out more this week.
I will post some pictures of our excellent vacation soon!
So what this means is NO MORE CHEMO!!! Again. It was a bummer that he did have a #13 treatment. I don't think Adam Hubner's wedding was as fun as it could have been, but we had a GREAT time. And his energy returned by Monday. We were able to enjoy a MUCH needed vacation. Once Justin got the call on Friday, I really saw him back to 100%. He said he feels 90% because his upper body doesn't feel as strong as he would like it to. Maybe he'll start lifting weights.
Onto the plans for radiation. We are not sure when he will be able to begin since he has had chemotherapy recently. They usually say 4 weeks to let your body heal. We will find out more this week.
I will post some pictures of our excellent vacation soon!
Tuesday, August 19, 2008
Crazy Week!
This has sure been a crazy week and it is only Tuesday! Justin and I had some serious conversations over the weekend after doing some research and decided that in order to make the best decision for the next step, we had to ask some serious questions when we met with the radiation oncologist on Monday and the lymphoma specialist at U of M today. It wasn't easy, but I think in the end we have made the best decision for Justin.
I won't ramble on with all that was said, but get right to our decision. Justin has decided to get two more cycles [4 treatments] of the same chemotherapy regimen he just finished. It is really the best option with all the information we have, or don't have for that matter.
First off, we have no idea if he is clear of cancer. The uptake showing on his last PET scan is relatively high. We asked about a biopsy, but it isn't an option because it is too invasive and there is a high possibility it will tell us a false negative. And whether the biopsy was negative or positive, we would probably have the same list of choices we have now. I don't know if we would choose a different one. So really not worth the risk of what that procedure would bring to be sitting in the same boat that we are sitting in now.
Justin has already responded great to chemotherapy. It is our hope that he just needs a bit more to do the trick. In two months, Justin will repeat the CT and PET scan and we will have to make another decision based on those results. We know what the possibilities are and are hoping that after two cycles his scans will show that he is in remission and can move on to radiation.
I keep reminding Justin and I that this has only extended his treatment longer than we had originally planned. This hasn't changed the end result. It is hard to get passed the disappointment and the fear, but I know we can do this. I know Justin can do this.
Justin will have his #13 treatment on Thursday, and will continue every two weeks from there on out.
This weekend is Adam Hubner's wedding. Justin has been so excited to be a part of his wedding and was already devastated when he couldn't attend the bachelor party a few weekends ago. We are still planning to go and have the most wonderful time! We are also not changing our plans to vacation the following week in Lexington at a cottage with my family. Instead of being disappointed and putting our lives on hold, we have decided that these treatments and scans will have to find a way to work around us.
We still have an appointment with Dr. Junck tomorrow. Justin had his MRI this morning and Dr. Alzoubi read the results. Things sounded good, so hopefully there won't be any surprises tomorrow. We have had enough for one week!
I won't ramble on with all that was said, but get right to our decision. Justin has decided to get two more cycles [4 treatments] of the same chemotherapy regimen he just finished. It is really the best option with all the information we have, or don't have for that matter.
First off, we have no idea if he is clear of cancer. The uptake showing on his last PET scan is relatively high. We asked about a biopsy, but it isn't an option because it is too invasive and there is a high possibility it will tell us a false negative. And whether the biopsy was negative or positive, we would probably have the same list of choices we have now. I don't know if we would choose a different one. So really not worth the risk of what that procedure would bring to be sitting in the same boat that we are sitting in now.
Justin has already responded great to chemotherapy. It is our hope that he just needs a bit more to do the trick. In two months, Justin will repeat the CT and PET scan and we will have to make another decision based on those results. We know what the possibilities are and are hoping that after two cycles his scans will show that he is in remission and can move on to radiation.
I keep reminding Justin and I that this has only extended his treatment longer than we had originally planned. This hasn't changed the end result. It is hard to get passed the disappointment and the fear, but I know we can do this. I know Justin can do this.
Justin will have his #13 treatment on Thursday, and will continue every two weeks from there on out.
This weekend is Adam Hubner's wedding. Justin has been so excited to be a part of his wedding and was already devastated when he couldn't attend the bachelor party a few weekends ago. We are still planning to go and have the most wonderful time! We are also not changing our plans to vacation the following week in Lexington at a cottage with my family. Instead of being disappointed and putting our lives on hold, we have decided that these treatments and scans will have to find a way to work around us.
We still have an appointment with Dr. Junck tomorrow. Justin had his MRI this morning and Dr. Alzoubi read the results. Things sounded good, so hopefully there won't be any surprises tomorrow. We have had enough for one week!
Saturday, August 16, 2008
Additional Opinions
Sometimes I find writing on this blog a bit difficult because I am not sure if I explain things correctly or clearly. So once again I will do my best to explain the results of Justin's PET scan.
The PET scan shows activity. More so then we would like. It is a bit worrisome. Dr. Fata wants us to speak with Dr. Ezz, the radiation oncologist who specializes in lymphoma as well as Dr. Alzoubi who practices in the lymphoma clinic at U of M. We saw Dr. Alzoubi back in February for a third opinion following our trip at Sloan Kettering in New York. He is very familiar with Justin and his case since Dr. Fata has kept in touch with him. Dr. Fata told us that he truly believes that both doctors will confirm radiation as the next step and wants us as well as him to feel comfortable with that decision.
I'll be honest, it was not the news we wanted to hear and has been very difficult to handle. But we keep reminding ourselves that the news could have been worse. Justin and I are disappointed that he did show uptake. We had hoped that the reports would have given him the all clear.
As you can tell, this week we will spend time with several doctors asking loads of questions that will hopefully give us the comfort we need to move to the next step.
Justin is feeling exceptionally well. He said he is a bit tired...but too me he really doesn't seem that way. I think Justin is used to 5 hours of sleep and he still needs about 8 hours, so to him, he is tired! It is great to see him spending so much time with Jackson. They really do enjoy each other and I know it means the world to Justin to be the dad he always imagined. So today, we focus on the fact that he is feeling excellent and we are taking full advantage of that!
The PET scan shows activity. More so then we would like. It is a bit worrisome. Dr. Fata wants us to speak with Dr. Ezz, the radiation oncologist who specializes in lymphoma as well as Dr. Alzoubi who practices in the lymphoma clinic at U of M. We saw Dr. Alzoubi back in February for a third opinion following our trip at Sloan Kettering in New York. He is very familiar with Justin and his case since Dr. Fata has kept in touch with him. Dr. Fata told us that he truly believes that both doctors will confirm radiation as the next step and wants us as well as him to feel comfortable with that decision.
I'll be honest, it was not the news we wanted to hear and has been very difficult to handle. But we keep reminding ourselves that the news could have been worse. Justin and I are disappointed that he did show uptake. We had hoped that the reports would have given him the all clear.
As you can tell, this week we will spend time with several doctors asking loads of questions that will hopefully give us the comfort we need to move to the next step.
Justin is feeling exceptionally well. He said he is a bit tired...but too me he really doesn't seem that way. I think Justin is used to 5 hours of sleep and he still needs about 8 hours, so to him, he is tired! It is great to see him spending so much time with Jackson. They really do enjoy each other and I know it means the world to Justin to be the dad he always imagined. So today, we focus on the fact that he is feeling excellent and we are taking full advantage of that!
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