I know that a lot of folks have been waiting for this update, and I apologize, but I was just not in the right frame of mind to be able to do any more than talk to a few people. There are some that I would have preferred to talk to before posting this, and for that I apologize. Please don't be offended if I didn't call you before you read this.
We met with the oncologist yesterday and unfortunately, there was not much good news. He told us about three options. First option is surgery. The doctor does not believe that Greg is a good candidate for surgery. Because of his congestive heart failure and pacemaker/defibrillator, he is at "significantly high risk for surgical complications," including having a heart attack on the operating table. In addition, because of where the mass is located, there may not be enough of his esophagus above the tumor to be able to resect it once the tumor is removed. He needs at least 5mm, and he doesn't think there's enough. Even with this information, we are meeting with a surgeon on Tuesday.
Another option is chemotherapy alone. Chemo alone is not enough to destroy the tumor and destroy the cancer. Period. We have already ruled this out.
Last option is radiation and chemotherapy. The radiation will reduce the size of the tumor and the chemotherapy will destroy the cancer. However, there are other risks. First, because he had total body radiation during his bone marrow transplant, he may have already had enough radiation that his body cannot handle any more. Greg's radiation records are on their way to the radiation oncologist so he will have that information prior to our appointment on Friday. Not only that, but the radiation is going to cause enough damage to his esophagus that he will end up with a feeding tube. That's not a "maybe." That is 100% guaranteed. It's not going to be pretty.
Chemotherapy is also going to be brutal. Because he has had so much chemotherapy in the past, and his body has been so ravaged by the chemotherapy, he will not be able to start out at the "normal" dose that most other people would receive. So, he would start that on a tapered dose. He would receive the chemo 24/7, and the radiation would be every couple of days (if I remember correctly). This would be a seven week course of treatment. He will also have another Hickman Catheter implanted because his veins are shot from all the chemo, and because of the way the chemo will be administered.
Once see the two specialists, they will meet with our oncologist and come up with a plan of action.
In the meantime, we are looking into getting a second opinion at Mayo Clinic in Rochester, Minnesota. Our insurance has a nice travel benefit to go to one of their "Centers of Excellence" for second opinions and treatment, so we are going to take advantage of that. Our Case Manager is doing some research to see who may be the best doctor to see us. One of the good things about Mayo is that they will have an entire team of specialists to review Greg's records and come up with a treatment plan. What we are looking for is for them to either tell us that the treatment plan our current team comes up with is the plan that they would recommend. If Mayo comes up with something different, then we are hoping our oncologist will be receptive to following the protocol that Mayo comes up with.
So, that's what's going on. It's going to be brutal. There's no other way to describe it. I don't know why the enemy is fighting so hard for us, but we are not giving in. Our God is amazing and will always be there for us. We will continue to praise Him and glorify Him. He will get us through this, of that, I have no doubt!
Showing posts with label endoscope. Show all posts
Showing posts with label endoscope. Show all posts
Wednesday, April 12, 2017
Tuesday, April 11, 2017
Today's the Day!
Well, today's the day. The day we find out what Greg's treatment options are and here I sit with my limpy limbs -- I had a training session with Ian yesterday, so my arms feel like rubber. Greg told me to take my limpy limbs to bed! LOL So, it's 5 in the morning and I'm unable to sleep. I was exhausted yesterday because I hardly got any sleep on Sunday because of massive thunderstorms. My weather radio went off four times! Here I thought I'd be able to sleep longer, seeing as I didn't have to get up with an alarm, but my body said nope, not happening.
So many things are running through my head right now, and most of them are not good. I've mentioned in the past that Easter time scares me because so many bad things have happened at this time of year. This Thursday, Holy Thursday, marks 25 years since Greg was first diagnosed with cancer. I'll never forget that day. I'm not going to rehash it here. Suffice it to say, I was a terrified young wife, only 25 years old, with a one year old son. Fast forward to April 12, 2000 (Aaron's 9th birthday, by the way), and we find Greg having a bone marrow transplant. Tomorrow marks 17 years since his transplant. The day his brother saved his life. Since that first diagnosis, we had two miracle babies (chemo usually makes you sterile!), built a house, moved up north, opened and closed our own business, started raising chickens (who'd have thunk it!), and best of all, found new life in Jesus!
Now, almost 17 years to the day of his transplant, we are heading to the Oncologist office to find out how we are going to battle esophageal cancer. Greg is back to his usual (cancer fighting) self. Let's get this going! Whatever needs to be done, he does, usually with a smile while I'm the one cringing. It's a little different this time, because my girls are older. They were too young 17 years ago to really understand how horrific that time in our lives was and how scared I really was. Now, they are adults, and they are scared. While they were used to health issues with Greg, that was just his heart. I know that sounds callous, but when you have congestive heart failure, your family learns how to deal with frequent hospitalizations. This is different. I'm not sure how Aaron is feeling about this. He was 9 when Greg had his transplant. I know he remembers a lot of what happened. I just don't know how he's feeling about all this. To be honest, I'm scared, too. Who wouldn't be? We try to be tough and say, well, this is our third time dealing with cancer, we're used to it. But you know what, we're NOT used to it. No one EVER "gets used to it."
So, here I am rambling at 5 a.m., just waiting for time to pass before our appointment at noon.
So many things are running through my head right now, and most of them are not good. I've mentioned in the past that Easter time scares me because so many bad things have happened at this time of year. This Thursday, Holy Thursday, marks 25 years since Greg was first diagnosed with cancer. I'll never forget that day. I'm not going to rehash it here. Suffice it to say, I was a terrified young wife, only 25 years old, with a one year old son. Fast forward to April 12, 2000 (Aaron's 9th birthday, by the way), and we find Greg having a bone marrow transplant. Tomorrow marks 17 years since his transplant. The day his brother saved his life. Since that first diagnosis, we had two miracle babies (chemo usually makes you sterile!), built a house, moved up north, opened and closed our own business, started raising chickens (who'd have thunk it!), and best of all, found new life in Jesus!
Now, almost 17 years to the day of his transplant, we are heading to the Oncologist office to find out how we are going to battle esophageal cancer. Greg is back to his usual (cancer fighting) self. Let's get this going! Whatever needs to be done, he does, usually with a smile while I'm the one cringing. It's a little different this time, because my girls are older. They were too young 17 years ago to really understand how horrific that time in our lives was and how scared I really was. Now, they are adults, and they are scared. While they were used to health issues with Greg, that was just his heart. I know that sounds callous, but when you have congestive heart failure, your family learns how to deal with frequent hospitalizations. This is different. I'm not sure how Aaron is feeling about this. He was 9 when Greg had his transplant. I know he remembers a lot of what happened. I just don't know how he's feeling about all this. To be honest, I'm scared, too. Who wouldn't be? We try to be tough and say, well, this is our third time dealing with cancer, we're used to it. But you know what, we're NOT used to it. No one EVER "gets used to it."
So, here I am rambling at 5 a.m., just waiting for time to pass before our appointment at noon.
Tuesday, March 28, 2017
Endoscopy Results were NOT what we wanted.
So, I have been putting off this post for a couple days until we knew for certain, and today was the day. Greg had to have the endoscopy because he was having problems swallowing. As it turns out, the reason he is having trouble swallowing is because he has a mass in his esophagus. On Friday, the doctor told us that he would be "surprised if it wasn't cancer." He took biopsies and sent them to the pathologist.
Today, we got the results. Based on the sections that were examined, he has esophageal cancer. We don't know what stage yet or any other information. That's because the mass is rather high in his esophagus, which makes it hard to get to with the traditional endoscope.
Because we also don't know if it has metastasized (spread), he needs to have what is called a PET scan. Cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do normal cells, so it's the best test to use to see if the cancer has spread. PET Scan Info Greg is scheduled to have the PET scan this Friday, March 31, 2017.
The other test he needs to have done is similar to an endoscopy, but they will go through his nose, instead of throat. That way, they will have a clearer view of the tumor and be better able to take more biopsies. He's going to have that done on April 4th.
We have an appointment with the oncologist for April 11th. One day before the 17th anniversary of his Bone Marrow Transplant! When we see the oncologist, he will have the results from the tests, and will discuss with us a plan of action. Once we have that done, I will be in a much better place than I am right now. I HATE not knowing! Once we know what stage he's in and what we have to do to combat it, I will feel better and more confident. We've been through this before. We can do it again.
A little more background on this cancer. Seventeen years ago, Greg had a bone marrow transplant for Non-Hodgkins Lymphoma (you can read all about it here: Greg's Blog Starting in January, 2000 ) As part of his transplant, he had to have Total Body Irradiation (TBI). Not only that, but about two years after his transplant (in 2002), he was diagnosed with something called Barretts Esophagus. Unfortunately, between the TBI and Barretts Esophagus, he had little chance to avoid this diagnosis.
Greg was originally diagnosed with Non-Hodgkins Lymphoma on Holy Thursday in 1992. Aaron was just a year old at the time, and of course, neither of the girls were born yet. After the chemo he went through, they are my miracle babies! Greg was in remission for six years, and we found out his cancer had returned in November, 1998. He went through two years of chemo, trying to destroy the cancer, which didn't work. Our only option at that point was a Bone Marrow Transplant. Greg's brother, Tom, was a perfect match for him. The link goes to Tom's harvest page on Greg's blog.
So, that's where we're at right now. Your prayers will, of course, be appreciated.
Today, we got the results. Based on the sections that were examined, he has esophageal cancer. We don't know what stage yet or any other information. That's because the mass is rather high in his esophagus, which makes it hard to get to with the traditional endoscope.
Because we also don't know if it has metastasized (spread), he needs to have what is called a PET scan. Cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do normal cells, so it's the best test to use to see if the cancer has spread. PET Scan Info Greg is scheduled to have the PET scan this Friday, March 31, 2017.
The other test he needs to have done is similar to an endoscopy, but they will go through his nose, instead of throat. That way, they will have a clearer view of the tumor and be better able to take more biopsies. He's going to have that done on April 4th.
We have an appointment with the oncologist for April 11th. One day before the 17th anniversary of his Bone Marrow Transplant! When we see the oncologist, he will have the results from the tests, and will discuss with us a plan of action. Once we have that done, I will be in a much better place than I am right now. I HATE not knowing! Once we know what stage he's in and what we have to do to combat it, I will feel better and more confident. We've been through this before. We can do it again.
A little more background on this cancer. Seventeen years ago, Greg had a bone marrow transplant for Non-Hodgkins Lymphoma (you can read all about it here: Greg's Blog Starting in January, 2000 ) As part of his transplant, he had to have Total Body Irradiation (TBI). Not only that, but about two years after his transplant (in 2002), he was diagnosed with something called Barretts Esophagus. Unfortunately, between the TBI and Barretts Esophagus, he had little chance to avoid this diagnosis.
Greg was originally diagnosed with Non-Hodgkins Lymphoma on Holy Thursday in 1992. Aaron was just a year old at the time, and of course, neither of the girls were born yet. After the chemo he went through, they are my miracle babies! Greg was in remission for six years, and we found out his cancer had returned in November, 1998. He went through two years of chemo, trying to destroy the cancer, which didn't work. Our only option at that point was a Bone Marrow Transplant. Greg's brother, Tom, was a perfect match for him. The link goes to Tom's harvest page on Greg's blog.
So, that's where we're at right now. Your prayers will, of course, be appreciated.
Subscribe to:
Posts (Atom)