Can anyone say 'Limbo?'
Limbo - to be left in oblivion, an indeterminate state...
OK, so that's how today felt a little bit, but I know I'm overreacting. Well, now that I have that little confession out of the way I'll tell you about our day and I'll try to be as quick as I can because we are both a little overtired...
We made our way to the city for our first appointment at 12:30p.m. We walked down the familiar hallway once more, but this time we took a left into Cancer Care and made our way to the phlebotomy department. But, first we need to make a stop at Clinic 2 to pick up the paper work that the lab needs to let them know what they are testing for.
We reported to the secretary who promptly gave us our papers and then stopped us before we left the clinic.
"Are you seeing Dr. Schroeder as well today?" she called out.
We turned in confusion. "No," Wes said, "We see Dr. Butler"
"Have you ever seen Dr. Schroeder?"
"No," I replied "We've only seen Dr. Butler"
"Oh, well then there must have been a mistake made. They've marked you down as seeing Dr. Schroeder."
We smiled and thanked her as she made the appropriate changes and continued out the door. After a short wait Wes had his blood taken and we made our way back to the clinic. We were given our regular form to fill out and before we even had the first question answered we were called into the exam room. We quickly finished filling out the form in the room and then our nurse Kim entered the room.
She asked a number of questions, mostly about the chemo and how that was going, any reactions, any tingling or numbness, any headaches, any speech problems, etc. It was at that point that we were told that Dr. Butler was no longer with them and that we may be seeing Dr. Schroeder instead. There was nothing we could do to change that although we were a bit disappointed, but there seems to be a huge turnover of doctors and nurses at HSC and that's just how things are.
Wes mentioned to Kim that Dr. Butler had talked about weaning Wes off of his Dilantin and Kim said that she would check with the other nurse and the doctor and let us know. She left the room.
Then Pam, a new RN, a new RN, for us anyway, then came in and began explaining that the doctors were happy with how the MRI looked and so she would be the one to tell us the results and we would not be seeing any doctor. She sat with us and we read through the results together. Well, she read the results and we had questions, but she didn't really have all the answers.
"The MRI looks good, except that they did find a spot on the brain in the area where they performed surgery that looks like an infarction or a blood clot probably from the surgery. They want to watch it to make sure it is not growing so we will be scheduling another MRI in two months to keep an eye on it. It can cause a stroke, so we need to watch it carefully." she said very matter of fact. "And Kim mentioned that Dr. Butler had talked about taking you off the Dilantin and we discussed it with the other Doctors and we agree that we should wean you off. Very slowly, but you should be done in a couple of weeks. You can start today."
Well, Wes' face lit up like a kid on Christmas morning. I laughed and said "You have no idea how exciting this is for him!"
She smiled back, "Well, we're going to do it very slowly so that you don't run any risk of having a seizure. Although the amount that you have been on for the past six months would not have prevented you from having a seizure anyway."
We had already figured that out after our visit with Dr. Gomori so she wasn't telling us anything new.
After giving us our new prescription for Temozolomide, which Wes will be starting on May 6th, which happens to be our 25th wedding anniversary!!! Oh well, so it goes. Then she left the room. We sat and stared at each other for a bit and then began to wonder if the appointment was over. We made our way to the area we had seen Pam disappear into and after double checking that yes we were done we were on our way.
The whole thing felt strange. I mean, on one hand there was good news, although the infarction does worry me a bit, but it also felt weird not to talk to a doctor at all. That's what I mean about the limbo thing, you sort of feel like you're left hanging. I think that because we had such a great report from Dr. Butler in January I was expecting the same type of appointment and because you're dealing people who haven't been with you on this journey the excitement level is different. Don't get me wrong, they are all very good at what they do and appear to be very caring people, it's just we don't have a history with them and so there is a bit of a detached feeling.
We walked out of the hospital and I had a stern talk with myself that the results were good, but, I just couldn't get it out of my head that if felt like the appointment wasn't finished yet. I know, I know, that's just an old fashioned way of thinking that you need to see a doctor. But, that's just how I feel. I guess God and I will be having a long talk about this. I should probably let him do the talking for once huh?
"To God belong wisdom and power; counsel and understanding are his." Job 12:13
OK, so that's how today felt a little bit, but I know I'm overreacting. Well, now that I have that little confession out of the way I'll tell you about our day and I'll try to be as quick as I can because we are both a little overtired...
We made our way to the city for our first appointment at 12:30p.m. We walked down the familiar hallway once more, but this time we took a left into Cancer Care and made our way to the phlebotomy department. But, first we need to make a stop at Clinic 2 to pick up the paper work that the lab needs to let them know what they are testing for.
We reported to the secretary who promptly gave us our papers and then stopped us before we left the clinic.
"Are you seeing Dr. Schroeder as well today?" she called out.
We turned in confusion. "No," Wes said, "We see Dr. Butler"
"Have you ever seen Dr. Schroeder?"
"No," I replied "We've only seen Dr. Butler"
"Oh, well then there must have been a mistake made. They've marked you down as seeing Dr. Schroeder."
We smiled and thanked her as she made the appropriate changes and continued out the door. After a short wait Wes had his blood taken and we made our way back to the clinic. We were given our regular form to fill out and before we even had the first question answered we were called into the exam room. We quickly finished filling out the form in the room and then our nurse Kim entered the room.
She asked a number of questions, mostly about the chemo and how that was going, any reactions, any tingling or numbness, any headaches, any speech problems, etc. It was at that point that we were told that Dr. Butler was no longer with them and that we may be seeing Dr. Schroeder instead. There was nothing we could do to change that although we were a bit disappointed, but there seems to be a huge turnover of doctors and nurses at HSC and that's just how things are.
Wes mentioned to Kim that Dr. Butler had talked about weaning Wes off of his Dilantin and Kim said that she would check with the other nurse and the doctor and let us know. She left the room.
Then Pam, a new RN, a new RN, for us anyway, then came in and began explaining that the doctors were happy with how the MRI looked and so she would be the one to tell us the results and we would not be seeing any doctor. She sat with us and we read through the results together. Well, she read the results and we had questions, but she didn't really have all the answers.
"The MRI looks good, except that they did find a spot on the brain in the area where they performed surgery that looks like an infarction or a blood clot probably from the surgery. They want to watch it to make sure it is not growing so we will be scheduling another MRI in two months to keep an eye on it. It can cause a stroke, so we need to watch it carefully." she said very matter of fact. "And Kim mentioned that Dr. Butler had talked about taking you off the Dilantin and we discussed it with the other Doctors and we agree that we should wean you off. Very slowly, but you should be done in a couple of weeks. You can start today."
Well, Wes' face lit up like a kid on Christmas morning. I laughed and said "You have no idea how exciting this is for him!"
She smiled back, "Well, we're going to do it very slowly so that you don't run any risk of having a seizure. Although the amount that you have been on for the past six months would not have prevented you from having a seizure anyway."
We had already figured that out after our visit with Dr. Gomori so she wasn't telling us anything new.
After giving us our new prescription for Temozolomide, which Wes will be starting on May 6th, which happens to be our 25th wedding anniversary!!! Oh well, so it goes. Then she left the room. We sat and stared at each other for a bit and then began to wonder if the appointment was over. We made our way to the area we had seen Pam disappear into and after double checking that yes we were done we were on our way.
The whole thing felt strange. I mean, on one hand there was good news, although the infarction does worry me a bit, but it also felt weird not to talk to a doctor at all. That's what I mean about the limbo thing, you sort of feel like you're left hanging. I think that because we had such a great report from Dr. Butler in January I was expecting the same type of appointment and because you're dealing people who haven't been with you on this journey the excitement level is different. Don't get me wrong, they are all very good at what they do and appear to be very caring people, it's just we don't have a history with them and so there is a bit of a detached feeling.
We walked out of the hospital and I had a stern talk with myself that the results were good, but, I just couldn't get it out of my head that if felt like the appointment wasn't finished yet. I know, I know, that's just an old fashioned way of thinking that you need to see a doctor. But, that's just how I feel. I guess God and I will be having a long talk about this. I should probably let him do the talking for once huh?
"To God belong wisdom and power; counsel and understanding are his." Job 12:13
Comments