Scan Results and Brain Surgery Status
This past week was a big week with a couple of visits, some new scans, and another infusion. The fallout of this last bit of radiation on my brain tumor has been quite the adventure! I haven't ever experienced something quite like this and Kim and I have sure enjoyed the unknown! Three ER trips has kept us on our toes and anxious for some sort of concrete direction on what needs to happen. On June 4th, I was able to get another brain MRI done to see where things were at with the irradiated tumor. As I mentioned in my last post, there was a fair amount of swelling around the tumor, but no new tumors and no growth of the other tumors. The belief, with regard to the irradiated tumor, is that the swelling and growth is strictly due to the tumor responding to treatment.
On Tuesday, June 9th, I was able to meet with Dr. Jensen, the neurosurgeon at Huntsman, to discuss the results and to formulate a plan moving forward. He showed us some images of the scans. Here are the images:
The first picture has all three images, with the oldest being on the right (prior to radiation), the middle being the one immediately following my major seizure (4/20), and the far left being the one just taken on 6/4. The second photo is more of a close up of the post-seizure and most recent photo. All of the dark grey around the tumor is swelling. As you can see, there is a large amount of swelling around the tumor and the tumor has increased in size significantly since radiation.
We had a good visit with Dr. Jensen and a lot of questions were answered. Generally, this type of response isn't seen until 6-9 months after radiation. Mine occurred in less than 3 weeks. Dr. Jensen, in general, never sees this type of a response. His feeling, though, is that this won't get worse and we should start to see the tumor shrink, along with the swelling. Obviously, one of our concerns, though, is that the swelling will continue and, at this rate, that could be dangerous.
There were a couple of options discussed for moving forward: steroids and surgery.
Steroids: We discussed the three sets of steroids I was placed on following my three ER visits. All three of us (meaning Dr. Jensen, Kim, and me) felt that none of the tapers were long enough. The longest was two weeks and Dr. Jensen feels that is a very short taper. He recommended about a 6 week taper. He also emphasized the ending of the taper being much more important than the beginning of the taper. As you taper off the steroid, you need to allow your body enough time to adjust in order to "self manage" the situation. If you get off of the steroid too quickly, your body can't compensate and you end up in trouble, much like I did multiple times.
Surgery: We discussed surgery and his concerns. Obviously, brain surgery comes with risks. His feelings, though, are that the tumor is in a good location and there are no immediate concerns he has regarding removing the tumor. He even said we could have pictures taken during the surgery! Wahoo!
Decision: I'm sure this seems obvious to everyone, but we decided to give the steroids a try. Avoiding surgery is a big priority and, as much as I hate being on steroids, I'm willing to give them another try. If at any point, I experience issues with lowering my dose as I taper, I am to go back up to the prior dosage. If, throughout the course of this taper, we find that we are running into issues OR I reach a point where I am tired of doing the "dance", we will revisit surgery. Steroids wreak havoc on my body. I hate how they make me look and how they make me feel. They have helped me a lot, but if I continue to run into issues with them, I will elect for surgery. Knowing that the tumor is in a favorable spot and the doctor feels good about the procedure, I wouldn't hesitate to go that route if the steroids aren't doing their job. As of today, I am on my last day of 4 mg of steroids morning and night. Tomorrow, I will drop to 3 mg of steroids morning and night for a week. The taper will continue after that for several more weeks. We are hopeful it will work, but I am going to pay extra close attention to my body to ensure this is kept under control.
New scans:
The day after visiting with Dr. Jensen, Kim and I went up north for more scans and another infusion. I had CT scans of my pelvis, abdomen, chest, and neck done. We had wonderful results. There were no new tumors detected. None of the existing tumors grew. A handful of the tumors actually shrunk! This means that everything in my body is stable. When you also consider that there were no new tumors in my brain and there was actually a decrease in tumor sizes in my brain (other than the rogue irradiated one), these results have been wonderful all around. In general, things appear to be very stable at the moment and well under control! We couldn't be happier given everything that has taken place!
Infusion:
My labs all came back looking great and I was able to go through with another infusion. I do hate that visitors aren't allowed, but we are adjusting. Fortunately, this was a relatively quick infusion. I learned a bit of a trick this time... After meeting to review the scans and labs, I asked them to release my drugs for the infusion. That meant my drugs were ready shortly after arriving at the infusion center instead of having to wait at least half an hour for them to get cooked up. Pretty slick!
Frustration:
There was one moment of frustration during this whole day. I spoke about the appointment I had with the neurologist in a previous post. I really struggled with him because he was condescending and failed to really involve me in any of the decision making process. He treated me as if I should already know what's going on and like my questions and concerns were stupid. Nevertheless, I decided to give him another try. Dr. Swami, my oncologist, reached out the the neurologist after my 6/4 brain MRI and third ER visit to let him know what had happened. On 6/9, I met with Dr. Jensen, the neurosurgeon who has dealt a lot with brain tumors, radiation, and the side effects. We discussed treatment with steroids moving forward and how to adjust my anti-seizure meds if necessary during that visit.
On 6/10, while at the hospital getting stuff done, I received a voicemail from the neurologist. His voicemail went something like this...
"Dr. Swami talked to me. I'm changing your seizure meds from Keppra to some other medication I can't remember. I've called that in for you. Thanks, bye."
That's the voicemail in a nutshell. No conversation. No dialogue. No opportunity for me to ask questions. No real desire to understand how I was doing and any other conversations I had participated in. He simply made a unilateral change. This, in my opinion, is NOT how doctors should function. I have since spoken with the neurosciences clinic and expressed a desire to switch neurologists. I refuse to work with someone that treats his/her patients this way. If I'm not going to be allowed to be involved with my own healthcare, then I don't want that doctor involved either. Hopefully, the new neurologist (if approved) is better at this stuff than the one I've worked with. We shall see!
After leaving the hospital, Kim and I headed home. I genuinely love our visits in the car. We stopped at Costco and, as usual, spent more money than we had planned on. But! The toilet paper is back in stock and that whole fad seems to be slowing down haha In general, it was a long day. We were up at 4:15 am and got home in the evening. Lots of driving and time away from home. That being said, we are very grateful that we can go to Huntsman and that I can receive the help and treatment I need in this battle.
God has been good to us and blessed us in ways we never thought possible throughout this process. We have seen and felt His hand in very intimate ways as we've moved forward. We are grateful for His mercy and His desire and willingness to bless His children. We are extremely grateful for our Savior, Jesus Christ, and His atoning sacrifice. We have been supported, sustained, and carried by the power of the Atonement through this process and are beyond grateful for all we have been blessed with. We know God lives.
On Tuesday, June 9th, I was able to meet with Dr. Jensen, the neurosurgeon at Huntsman, to discuss the results and to formulate a plan moving forward. He showed us some images of the scans. Here are the images:
The first picture has all three images, with the oldest being on the right (prior to radiation), the middle being the one immediately following my major seizure (4/20), and the far left being the one just taken on 6/4. The second photo is more of a close up of the post-seizure and most recent photo. All of the dark grey around the tumor is swelling. As you can see, there is a large amount of swelling around the tumor and the tumor has increased in size significantly since radiation.
We had a good visit with Dr. Jensen and a lot of questions were answered. Generally, this type of response isn't seen until 6-9 months after radiation. Mine occurred in less than 3 weeks. Dr. Jensen, in general, never sees this type of a response. His feeling, though, is that this won't get worse and we should start to see the tumor shrink, along with the swelling. Obviously, one of our concerns, though, is that the swelling will continue and, at this rate, that could be dangerous.
There were a couple of options discussed for moving forward: steroids and surgery.
Steroids: We discussed the three sets of steroids I was placed on following my three ER visits. All three of us (meaning Dr. Jensen, Kim, and me) felt that none of the tapers were long enough. The longest was two weeks and Dr. Jensen feels that is a very short taper. He recommended about a 6 week taper. He also emphasized the ending of the taper being much more important than the beginning of the taper. As you taper off the steroid, you need to allow your body enough time to adjust in order to "self manage" the situation. If you get off of the steroid too quickly, your body can't compensate and you end up in trouble, much like I did multiple times.
Surgery: We discussed surgery and his concerns. Obviously, brain surgery comes with risks. His feelings, though, are that the tumor is in a good location and there are no immediate concerns he has regarding removing the tumor. He even said we could have pictures taken during the surgery! Wahoo!
Decision: I'm sure this seems obvious to everyone, but we decided to give the steroids a try. Avoiding surgery is a big priority and, as much as I hate being on steroids, I'm willing to give them another try. If at any point, I experience issues with lowering my dose as I taper, I am to go back up to the prior dosage. If, throughout the course of this taper, we find that we are running into issues OR I reach a point where I am tired of doing the "dance", we will revisit surgery. Steroids wreak havoc on my body. I hate how they make me look and how they make me feel. They have helped me a lot, but if I continue to run into issues with them, I will elect for surgery. Knowing that the tumor is in a favorable spot and the doctor feels good about the procedure, I wouldn't hesitate to go that route if the steroids aren't doing their job. As of today, I am on my last day of 4 mg of steroids morning and night. Tomorrow, I will drop to 3 mg of steroids morning and night for a week. The taper will continue after that for several more weeks. We are hopeful it will work, but I am going to pay extra close attention to my body to ensure this is kept under control.
New scans:
The day after visiting with Dr. Jensen, Kim and I went up north for more scans and another infusion. I had CT scans of my pelvis, abdomen, chest, and neck done. We had wonderful results. There were no new tumors detected. None of the existing tumors grew. A handful of the tumors actually shrunk! This means that everything in my body is stable. When you also consider that there were no new tumors in my brain and there was actually a decrease in tumor sizes in my brain (other than the rogue irradiated one), these results have been wonderful all around. In general, things appear to be very stable at the moment and well under control! We couldn't be happier given everything that has taken place!
Infusion:
My labs all came back looking great and I was able to go through with another infusion. I do hate that visitors aren't allowed, but we are adjusting. Fortunately, this was a relatively quick infusion. I learned a bit of a trick this time... After meeting to review the scans and labs, I asked them to release my drugs for the infusion. That meant my drugs were ready shortly after arriving at the infusion center instead of having to wait at least half an hour for them to get cooked up. Pretty slick!
Frustration:
There was one moment of frustration during this whole day. I spoke about the appointment I had with the neurologist in a previous post. I really struggled with him because he was condescending and failed to really involve me in any of the decision making process. He treated me as if I should already know what's going on and like my questions and concerns were stupid. Nevertheless, I decided to give him another try. Dr. Swami, my oncologist, reached out the the neurologist after my 6/4 brain MRI and third ER visit to let him know what had happened. On 6/9, I met with Dr. Jensen, the neurosurgeon who has dealt a lot with brain tumors, radiation, and the side effects. We discussed treatment with steroids moving forward and how to adjust my anti-seizure meds if necessary during that visit.
On 6/10, while at the hospital getting stuff done, I received a voicemail from the neurologist. His voicemail went something like this...
"Dr. Swami talked to me. I'm changing your seizure meds from Keppra to some other medication I can't remember. I've called that in for you. Thanks, bye."
That's the voicemail in a nutshell. No conversation. No dialogue. No opportunity for me to ask questions. No real desire to understand how I was doing and any other conversations I had participated in. He simply made a unilateral change. This, in my opinion, is NOT how doctors should function. I have since spoken with the neurosciences clinic and expressed a desire to switch neurologists. I refuse to work with someone that treats his/her patients this way. If I'm not going to be allowed to be involved with my own healthcare, then I don't want that doctor involved either. Hopefully, the new neurologist (if approved) is better at this stuff than the one I've worked with. We shall see!
After leaving the hospital, Kim and I headed home. I genuinely love our visits in the car. We stopped at Costco and, as usual, spent more money than we had planned on. But! The toilet paper is back in stock and that whole fad seems to be slowing down haha In general, it was a long day. We were up at 4:15 am and got home in the evening. Lots of driving and time away from home. That being said, we are very grateful that we can go to Huntsman and that I can receive the help and treatment I need in this battle.
God has been good to us and blessed us in ways we never thought possible throughout this process. We have seen and felt His hand in very intimate ways as we've moved forward. We are grateful for His mercy and His desire and willingness to bless His children. We are extremely grateful for our Savior, Jesus Christ, and His atoning sacrifice. We have been supported, sustained, and carried by the power of the Atonement through this process and are beyond grateful for all we have been blessed with. We know God lives.
#FaithOverFear
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