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!
Tuesday, August 19, 2008
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!
Monday, August 11, 2008
Blogging for Blood Cancers
Blogging only came to me in our biggest time of crisis. I had to figure out a way to inform all our loving and concerned family and friends how Justin was doing in a quick, precise manner. I didn't realize that this blog would lead to a way I could help others. First off, I have found that some people follow this blog that we have never met. Individuals that unfortunately find themselves in a similar situation as Justin.
The Blogging for Blood Cancer Event is another way I am able to help those battling a blood cancer. I don't think you realize just how important not only money, but also raising awareness regarding cancer is until you find yourself or a love one in the situation. Even though I am new to this whole blogging world, I see this as a great way to raise awareness for all blood cancers, including Hodgkin's lymphoma.
I have mentioned this site before, but The Leukemia-Lymphoma Society website is a great place to start if you are looking for information regarding any of the blood cancers or you want information for how you can get involved raising money for the society.
Justin has his first PET scan since his treatment ended two weeks ago bright and early Wednesday morning. Hopefully we will have the results by Friday. Normally I wouldn't post anything until then because I know most of you are here to check for his updates. But I figure it is for a good cause and reason to post a few stories and information throughout this week for this event.
The Blogging for Blood Cancer Event is another way I am able to help those battling a blood cancer. I don't think you realize just how important not only money, but also raising awareness regarding cancer is until you find yourself or a love one in the situation. Even though I am new to this whole blogging world, I see this as a great way to raise awareness for all blood cancers, including Hodgkin's lymphoma.
I have mentioned this site before, but The Leukemia-Lymphoma Society website is a great place to start if you are looking for information regarding any of the blood cancers or you want information for how you can get involved raising money for the society.
Justin has his first PET scan since his treatment ended two weeks ago bright and early Wednesday morning. Hopefully we will have the results by Friday. Normally I wouldn't post anything until then because I know most of you are here to check for his updates. But I figure it is for a good cause and reason to post a few stories and information throughout this week for this event.
Tuesday, August 5, 2008
A Holding Pattern
Technology and medicine have left me stunned through Justin's experience. With all the advancements we have made, there still is much to develop. Especially in the world of cancer.
That being said I will do the best to explain what the CT scan report says. In terms of Justin's original masses, he responded excellent to treatment. One of his masses is completely gone, the other is stable, and the last/largest tumor in his chest still shows at least a 50% reduction. Apparently it is very common to finish treatment and still have masses. That is why it is important to have radiation. Scar tissue can develop around the mass and could hide possible cancer. So radiation takes care of those little buggers.
There is one area of concern, on the right side of his lung. This is the same area that led to the bleomycin being taken out of Justin's treatment. Now there are four tiny masses showing and a CT scan cannot determine what it is. I can honestly say we are not sure what this means. It could be inflammation, infection, damage to his lung...
So we are in a bit of a holding pattern. We need to wait until he has a PET scan next week. A PET scan cannot be done until two weeks from the last chemotherapy treatment due to the risk of false positives. PET scans are very sensitive.
Our holding pattern includes: trips to Cleveland, daddy time for Jack and Justin, the PGA golf tour and anything else we can find to do. This is just our reality. We have learned the importance of patience and once again we will have to practice it. I will let everyone know as soon as we figure out what is going on. Thanks for all your love and support!
That being said I will do the best to explain what the CT scan report says. In terms of Justin's original masses, he responded excellent to treatment. One of his masses is completely gone, the other is stable, and the last/largest tumor in his chest still shows at least a 50% reduction. Apparently it is very common to finish treatment and still have masses. That is why it is important to have radiation. Scar tissue can develop around the mass and could hide possible cancer. So radiation takes care of those little buggers.
There is one area of concern, on the right side of his lung. This is the same area that led to the bleomycin being taken out of Justin's treatment. Now there are four tiny masses showing and a CT scan cannot determine what it is. I can honestly say we are not sure what this means. It could be inflammation, infection, damage to his lung...
So we are in a bit of a holding pattern. We need to wait until he has a PET scan next week. A PET scan cannot be done until two weeks from the last chemotherapy treatment due to the risk of false positives. PET scans are very sensitive.
Our holding pattern includes: trips to Cleveland, daddy time for Jack and Justin, the PGA golf tour and anything else we can find to do. This is just our reality. We have learned the importance of patience and once again we will have to practice it. I will let everyone know as soon as we figure out what is going on. Thanks for all your love and support!
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