Karlye has been getting up more overnight and today. She took a long walk out of the room and to the family room which is down the hall a bit. It was a good distance for her.
We saw the doctor that is on call for Dr. Blair and she told us that Karlye is doing well. So, the plan right now is for her to get magnesium over two hours and then she can get disconnected from her IV and the monitors that she is hooked up to. That will make it easier for her to move around and go to the bathroom. She has two tubes in her neck for drainage from her incision. The doctor said as long as there is not much drainage they will come out tomorrow and she can be discharged. We are all looking forward to that happening.
The doctor explained to us that Karlye will be on calcium supplements probably over the next couple weeks and a hormone replacement Synthroid for the rest of her life.
As far as I am concerned Dr. Brinker wanted blood work Monday, Wednesday and Friday. But, because of the holidays Dr. Patel's office scheduled my blood work for Monday and Thursday of next week and the week after. My blood work from Friday showed that my platelet counts are on the decline at 54,000. If they get to 15,000 they will need to give me platelets. My white blood count is dropping as expected and my hemoglobin is staying up for now.
Depending on when Karlye gets discharged and we get back home I will see where I can I get my blood work done. The way that I am feeling now I don't think I will need a blood transfusion. I might need platelets and depending on the blood work they might need to give me platelets so that I can make it through Christmas to my next blood draw.
Today's plan is to get Karlye to walk as many times as possible and do her breathing exercises.
Sunday, December 22, 2013
Saturday, December 21, 2013
Karlye update.
I haven't posted to my blog since before the day of surgery. For those that don't know Karlye had a really long day Thursday. She was in surgery 7 hours. Normal thyroid surgery is approx. 2 hours. There was more disease that what the doctors expected and it took considerably longer. During the surgery, and as a result of where some of the cancerous lymph nodes were, she had a collapsed left lung. The had thought this would seal itself. But, x-rays in recovery revealed it was worse and they had to put in a chest tube.
We had left Michigan at 6:30 a.m. that day and we did not get Karlye to her room until 1:30 in the morning. A long day for all of us to say the least.
Dr. Blair stopped by last night and gave us more information on the surgery. She told us that there was more disease than they expected. More than they had seen on the CT scans. Besides the lymph nodes on the right side of Karlye's neck there were some behind her collar bone down in her chest. There was also one behind her trachea and one in front. She did tell us that she took out all that she suspected to be cancerous. But, she did leave it open to there might be more and it is always possible that more surgery may be needed in the future. But, we are hoping that is not the case.
The past two days Karlye has been resting but sore from the chest tube. Actually more than her surgery site. She seems to complain more about the IV spot in her hand and the chest tube. We are hoping that the chest tube will come out today so that she can move around more without the pain.
As far as Cindy and I go we have been staying with Karlye as much as possible. Actually Cindy has not left her side and I just left long enough to get my blood work done and change clothes at the Ronald McDonald House. We decided to both sleep in the room with her so that we are here. Besides, I really didn't feel like being alone over at the Ronald McDonald House. Although it is a very nice place with nice rooms.
Today we are hoping to get the chest tube out and get Karlye to take a walk or two. We know she is not in a condition to come home today and probably not even tomorrow. We will just have to wait and see.
We had left Michigan at 6:30 a.m. that day and we did not get Karlye to her room until 1:30 in the morning. A long day for all of us to say the least.
Dr. Blair stopped by last night and gave us more information on the surgery. She told us that there was more disease than they expected. More than they had seen on the CT scans. Besides the lymph nodes on the right side of Karlye's neck there were some behind her collar bone down in her chest. There was also one behind her trachea and one in front. She did tell us that she took out all that she suspected to be cancerous. But, she did leave it open to there might be more and it is always possible that more surgery may be needed in the future. But, we are hoping that is not the case.
The past two days Karlye has been resting but sore from the chest tube. Actually more than her surgery site. She seems to complain more about the IV spot in her hand and the chest tube. We are hoping that the chest tube will come out today so that she can move around more without the pain.
As far as Cindy and I go we have been staying with Karlye as much as possible. Actually Cindy has not left her side and I just left long enough to get my blood work done and change clothes at the Ronald McDonald House. We decided to both sleep in the room with her so that we are here. Besides, I really didn't feel like being alone over at the Ronald McDonald House. Although it is a very nice place with nice rooms.
Today we are hoping to get the chest tube out and get Karlye to take a walk or two. We know she is not in a condition to come home today and probably not even tomorrow. We will just have to wait and see.
Wednesday, December 18, 2013
Karlye's surgery is tomorrow.
It has been a busy day and a lot going on in the last 24 hours. Karlye's surgery is tomorrow in Chicago. At first we were told that it would be at 2:00 and then not 30 minutes later we get a call back telling us that Dr. Blair saw the schedule and wanted Karlye moved to be the first patient of the day. She said it is going to be a long involved surgery and she wants to do it first. She wants to take whatever time is necessary for Karlye. She told me at out last appointment that she would take care of her like she was her own daughter. I told her that I would hold her to that! So, we have to be at the University of Chicago Medical Center to check in for pre-op by 8:30 and surgery is scheduled for 9:30. We will need to be leaving early in the morning and I hope that we do not hit any traffic getting in to the south side of Chicago.
Today I spent most of the morning getting my blood work done and taking care of some last minute things for Christmas and Emily's birthday. Dr. Patel thinks I should be ok until Monday and hopefully not need any blood products while we are in Chicago. My counts are falling and I will be susceptible to infection so she advised me to wear a mask while I am in Chicago. I will be getting blood work done on Friday to see where my counts are at and I am hoping I will have no issues.
Please keep Karlye in your thoughts and prayers tomorrow and pray that God will guide Dr. Blair's hands during the surgery and remove all the cancer. Also, to keep Karlye safe and the surgery and recovery goes as easily as it can! Thanks!
Today I spent most of the morning getting my blood work done and taking care of some last minute things for Christmas and Emily's birthday. Dr. Patel thinks I should be ok until Monday and hopefully not need any blood products while we are in Chicago. My counts are falling and I will be susceptible to infection so she advised me to wear a mask while I am in Chicago. I will be getting blood work done on Friday to see where my counts are at and I am hoping I will have no issues.
Please keep Karlye in your thoughts and prayers tomorrow and pray that God will guide Dr. Blair's hands during the surgery and remove all the cancer. Also, to keep Karlye safe and the surgery and recovery goes as easily as it can! Thanks!
Friday, December 13, 2013
Brinker morning visit.
Dr. Brinker news this morning. After he asked how I was feeling and how things are going of which I answered that so far I have only had a headache in response to treatment. Nothing that Tylenol cannot take care of, he did say that was more than likely caused from the anti-nausea medicine. He did tell me that he doesn't expect me to feel too bad from the treatment this week. But, that he expects me to feel fatigued next week and my counts to drop to the point that I will need blood products. That is why he wants blood work done Monday, Wednesday and Friday. With Karlye's surgery next Thursday I had to make arrangements with Karlye's doctor to get the blood work done at the University of Chicago. But, unless I hear otherwise today it looks like that will not be a problem. Only problem will be if I need blood or platelets. Then I will have to decide if I want to pay $100 out of pocket to have it done in the ER or come all the way back to St. Joe and get it done there. We will have to play it by ear.
We discussed what to expect following my release from the hospital. Besides what I already mentioned he did say that he didn't want me doing things like cleaning out the attic, picking up after the dog, being around people that are sick and being in big crowds like movie theaters or stores during the big rush times. Especially when I my counts are low.
He explained that my counts will drop and will then start to come back up like before. When they are back up he will then decide to put me back in the hospital and do the next round of consolidation chemo. I did ask him about when my next bone marrow biopsy would be and good news is unless something in my blood work indicates otherwise, my next bone marrow biopsy will not be until we are done sometime in April. Then checks ups every 3 months and another bone marrow biopsy in a year.
He had told me before that my consolidation chemo treatments will be about every twenty-eight days. So mid-January probably sometime around the 13th I will expect to be back in the hospital for another six days.
He did find out that I wasn't taking the lovenox and stressed that he wanted me to take it over the next three days because of the blot clots that they have been seeing in people with PIC lines. So I will be getting those maintenance shots once a day.
So, I just need to make it over the weekend and probably next week with no issues and should be good. Yeah!
We discussed what to expect following my release from the hospital. Besides what I already mentioned he did say that he didn't want me doing things like cleaning out the attic, picking up after the dog, being around people that are sick and being in big crowds like movie theaters or stores during the big rush times. Especially when I my counts are low.
He explained that my counts will drop and will then start to come back up like before. When they are back up he will then decide to put me back in the hospital and do the next round of consolidation chemo. I did ask him about when my next bone marrow biopsy would be and good news is unless something in my blood work indicates otherwise, my next bone marrow biopsy will not be until we are done sometime in April. Then checks ups every 3 months and another bone marrow biopsy in a year.
He had told me before that my consolidation chemo treatments will be about every twenty-eight days. So mid-January probably sometime around the 13th I will expect to be back in the hospital for another six days.
He did find out that I wasn't taking the lovenox and stressed that he wanted me to take it over the next three days because of the blot clots that they have been seeing in people with PIC lines. So I will be getting those maintenance shots once a day.
So, I just need to make it over the weekend and probably next week with no issues and should be good. Yeah!
Thursday, December 12, 2013
Back in the hospital.
Well, I am back in the hospital for what they call consolidation chemo. I know I posted on Facebook that Dr. Brinker said I was in remission. Truth is that they don't really consider you in remission from leukemia until you have made it five years after treatment without getting the leukemia back. So, first stage is Induction and second is four rounds of consolidation.
Plan is for me to be in here for six days. I am in here a little early so I can be there for Karlye's surgery on the 19th. Dr. Brinker somewhat threw me a twist this morning when we were discussion the follow up treatments after this round of chemo. The chemo knocks out your immune system and there will be blood transfusions and platelet infusions. He told me that I would need blood work done Monday, Wednesday and Friday. When I reminded him about Karlye's surgery on the 19th, which is a Thursday, I told him that I would be in Chicago on Friday. He got a little crappy with me when I asked if there was a way for me to get my blood drawn while I was in Chicago. He tells me that. "I guess if you are bleeding you can go to the emergency room and then they will do a blood test and you can explain your situation." Told me that he or doctor Patel did not have privileges at University of Chicago and it would be to hard to co-ordinate one blood transfusion there. I just want a blood test done. It takes forever to get a blood transfusion setup and done anyways. I will figure it out myself.
Karlye's CT scan the other day solidified the plan for surgery. Not much changed except a clearer view of the lymph nodes behind the collar bone and a possible one on her left side. None were seen in her chest so that was good news. Dr. Blair said she would remove anything she feels is suspicious.
So far I have been through my first round of chemo. Today is my day off and then another round tomorrow. I had a headache this morning and still have a dull headache but it is manageable. Stomach does feel a little weird but I am still eating ok.
Dr. Brinker informed me that this is high dose chemo and some of the side affects of the high dose is that it can affect my liver and kidneys. It can also affect my balance so I need to be on the look out for that. It can make my eyes dry and red. But, he has given me drops to help prevent that. It could make me nauseous, more because of the higher dose, because I have had this drug before. There are medicines that they can give me for any side affects. I just hope no other side affects come up.
He did say I would go home Monday if I was feeling well. Of course then I am wondering why I would not be feeling well? That comment along with my PA Neska making comments about me staying well and out of the ICU kind of makes me think but, fingers crossed. I told her that I would be out Monday. No time for me to be in here any longer anyways.
Plan is for me to be in here for six days. I am in here a little early so I can be there for Karlye's surgery on the 19th. Dr. Brinker somewhat threw me a twist this morning when we were discussion the follow up treatments after this round of chemo. The chemo knocks out your immune system and there will be blood transfusions and platelet infusions. He told me that I would need blood work done Monday, Wednesday and Friday. When I reminded him about Karlye's surgery on the 19th, which is a Thursday, I told him that I would be in Chicago on Friday. He got a little crappy with me when I asked if there was a way for me to get my blood drawn while I was in Chicago. He tells me that. "I guess if you are bleeding you can go to the emergency room and then they will do a blood test and you can explain your situation." Told me that he or doctor Patel did not have privileges at University of Chicago and it would be to hard to co-ordinate one blood transfusion there. I just want a blood test done. It takes forever to get a blood transfusion setup and done anyways. I will figure it out myself.
Karlye's CT scan the other day solidified the plan for surgery. Not much changed except a clearer view of the lymph nodes behind the collar bone and a possible one on her left side. None were seen in her chest so that was good news. Dr. Blair said she would remove anything she feels is suspicious.
So far I have been through my first round of chemo. Today is my day off and then another round tomorrow. I had a headache this morning and still have a dull headache but it is manageable. Stomach does feel a little weird but I am still eating ok.
Dr. Brinker informed me that this is high dose chemo and some of the side affects of the high dose is that it can affect my liver and kidneys. It can also affect my balance so I need to be on the look out for that. It can make my eyes dry and red. But, he has given me drops to help prevent that. It could make me nauseous, more because of the higher dose, because I have had this drug before. There are medicines that they can give me for any side affects. I just hope no other side affects come up.
He did say I would go home Monday if I was feeling well. Of course then I am wondering why I would not be feeling well? That comment along with my PA Neska making comments about me staying well and out of the ICU kind of makes me think but, fingers crossed. I told her that I would be out Monday. No time for me to be in here any longer anyways.
Friday, December 6, 2013
Karlye's appointment with Dr. Blair and some Good news.
We went to Karlye's appointment with Dr. Blair and she did confirm the diagnoses of thyroid cancer. She went over the CT scans that had been done at Lakeland Hospital and showed us the masses in Karlye's neck. There are more than what we had been told. She has also ordered a head, neck and chest CT to be done next Tuesday. She was very nice and very optimistic. She even took the time to show us how they would determine the stage of Karlye's cancer and because of her age it basically doesn't go higher than stage 2. She told us that she needed surgery to remove the thyroid and the affected lymph nodes. The reason she needs the CT scan of the chest is to see if it has spread into Karlye's lungs. She did not seem too concerned and told us that with surgery and eventual follow up with radioactive iodine that the prognoses was good. She told us that this is highly curable. The surgery has been scheduled for December 19th. If we do not do it that day we will not be able to get her in until after the first of the year. So, we will make this happen.
Good news! I did get a call from Dr. Brinker on our way back from Chicago. He said that I am in remission! He told me that the pathologist looked high and low for ANY leukemia cells and could not find any. He did state that i had a protein on my white blood cells that is usually a marker for the existence of leukemia cells. But, then stated that it might just be that I have that protein on my normal white blood cells anyways. He stated that the test for the protein only showed 0.02% and again restated that he is calling me to be in remission. I asked him if we could move up my next round of chemo so that I could be out of the hospital for Karlye's surgery. He was OK with that. So, it looks like I will be going in the hospital on Wednesday, December 11 in hopes of getting out on Monday the 16th. Although this does mean I will be spending my birthday in the hospital. (Someone is going to owe me. LOL.) I am glad that we can move this up so that I can be there when Karlye has her surgery. Although we are not sure where we will stay because Karlye will be in the hospital for 2 or 3 days. We will figure all this out in the next week I am sure.
Good news! I did get a call from Dr. Brinker on our way back from Chicago. He said that I am in remission! He told me that the pathologist looked high and low for ANY leukemia cells and could not find any. He did state that i had a protein on my white blood cells that is usually a marker for the existence of leukemia cells. But, then stated that it might just be that I have that protein on my normal white blood cells anyways. He stated that the test for the protein only showed 0.02% and again restated that he is calling me to be in remission. I asked him if we could move up my next round of chemo so that I could be out of the hospital for Karlye's surgery. He was OK with that. So, it looks like I will be going in the hospital on Wednesday, December 11 in hopes of getting out on Monday the 16th. Although this does mean I will be spending my birthday in the hospital. (Someone is going to owe me. LOL.) I am glad that we can move this up so that I can be there when Karlye has her surgery. Although we are not sure where we will stay because Karlye will be in the hospital for 2 or 3 days. We will figure all this out in the next week I am sure.
Thursday, December 5, 2013
Biopsy done waiting on results
Finally home from my appointment. Good news is that I do not have to give myself anymore shots of blood thinner AND I do not have to get more blood work done for now. Maybe not so good is that Dr. Brinker had us schedule for me to be back in the hospital on December 16th for my first round of follow up chemo. That is sooner than what I had expected. But, he explained that if I am in remission now, which he will not know for sure until he gets the results of today's biopsy, he wants to keep me there and do follow up chemo sooner than later.
Now to see what Dr. Blair has to say on Friday in regards to Karlye's thyroid cancer treatment. I want to be there if they decide surgery is the best treatment.
Dr. Brinker did tell us that he did not feel that there was anyone in Grand Rapids that he would recommend to treat Karlye. He said. "You need a good surgeon and unfortunately that is one thing we don't have here in Grand Rapids." If it was my wife or child I would look into University of Chicago and U of M. Those places that specialize in thyroid cancer treatment.
At least now I feel a little better about going to the University of Chicago in Friday. But we do have other recommendations from friends and one being Ohio state University. So, if for some reason we do not like Dr. Blair we have another option.
Now to see what Dr. Blair has to say on Friday in regards to Karlye's thyroid cancer treatment. I want to be there if they decide surgery is the best treatment.
Dr. Brinker did tell us that he did not feel that there was anyone in Grand Rapids that he would recommend to treat Karlye. He said. "You need a good surgeon and unfortunately that is one thing we don't have here in Grand Rapids." If it was my wife or child I would look into University of Chicago and U of M. Those places that specialize in thyroid cancer treatment.
At least now I feel a little better about going to the University of Chicago in Friday. But we do have other recommendations from friends and one being Ohio state University. So, if for some reason we do not like Dr. Blair we have another option.
Tuesday, December 3, 2013
Thoughts
I guess I had more time to work on my blog when I was in the hospital. Now that I am home it seems like there is less time to post. But, I will try to keep up with what is going on.
It has been a couple days since my last post. Thanksgiving has come and gone. It really doesn't seem real that now Karlye has been diagnosed with thyroid cancer. Believe me I wish we didn't get that news last week. I mean I can handle my diagnoses and treatment for AML, but now my focus is on Karlye and what has to happen to get her healthy. I am more concerned for her than I am for myself.
Part of it is because her course of treatment involves surgery and mine does not. Surgery concerns me more, I don't care what is said about any surgery there are risks. My mother was supposed to go to the University of Michigan for a routine procedure and be back to St. Joe in 24 hours. She past during the night after the procedure. That is something that has always bothered me. My mother had been in and out of the hospital all my life and it was the one time that I didn't take off work to be with her, not that the outcome would have been any different. But, I wasn't there.
A couple nights ago Karlye asked Cindy. "Why does all the bad stuff happen to us?" I was impressed by how Cindy handled it. She told her that we have lots to be thankful for, we have a roof over our head and we are together, for that I am glad. I am glad that we could be together for Thanksgiving and that I was home when we got the news about Karlye. But, I too wonder how much more my family will have to endure.
We had been given a couple of recommendations from Dr. Bovenkerk for Karlye's treatment. A Dr. Blair out of the University of Chicago and a Dr. Bradford out of the University of Michigan. We have decided to meet with Dr. Blair out of the University of Chicago. Karlye actually made the final choice. Both doctors are leaders in their field and I am sure either one would be a good choice.
I had also made a phone call to my oncologist Dr. Brinker for a recommendation. But, I have yet to hear back from him. I will be seeing him tomorrow for my biopsy and possibly then we can get some information that might help us decide if Grand Rapids is even an option.
Right now I am just not sure what I should do next. I am not sure when my next stint in the hospital will be, that I am sure we will discuss with Dr. Brinker tomorrow. I had really been thinking about trying to go back to work even though Dr. Brinker would prefer that I not go back to work until all my treatment is completed. Now I have to consider what will be going on with Karlye and we are just going to have to see when the specialist is going to want to schedule surgery. We should know more in the next couple of days, by the end of the week I will have the results of my next bone marrow biopsy. We will know how effective the induction chemo was and I am sure Dr. Brinker will lay out all the possibilities of my continued treatment. I am just hoping to stay out of the hospital till after Christmas. But, if that happens I am sure it will be right after that I will be in the hospital for my six days of chemo.
Well, I think that is all for now. I have other things that I need to take care of. Later.
It has been a couple days since my last post. Thanksgiving has come and gone. It really doesn't seem real that now Karlye has been diagnosed with thyroid cancer. Believe me I wish we didn't get that news last week. I mean I can handle my diagnoses and treatment for AML, but now my focus is on Karlye and what has to happen to get her healthy. I am more concerned for her than I am for myself.
Part of it is because her course of treatment involves surgery and mine does not. Surgery concerns me more, I don't care what is said about any surgery there are risks. My mother was supposed to go to the University of Michigan for a routine procedure and be back to St. Joe in 24 hours. She past during the night after the procedure. That is something that has always bothered me. My mother had been in and out of the hospital all my life and it was the one time that I didn't take off work to be with her, not that the outcome would have been any different. But, I wasn't there.
A couple nights ago Karlye asked Cindy. "Why does all the bad stuff happen to us?" I was impressed by how Cindy handled it. She told her that we have lots to be thankful for, we have a roof over our head and we are together, for that I am glad. I am glad that we could be together for Thanksgiving and that I was home when we got the news about Karlye. But, I too wonder how much more my family will have to endure.
We had been given a couple of recommendations from Dr. Bovenkerk for Karlye's treatment. A Dr. Blair out of the University of Chicago and a Dr. Bradford out of the University of Michigan. We have decided to meet with Dr. Blair out of the University of Chicago. Karlye actually made the final choice. Both doctors are leaders in their field and I am sure either one would be a good choice.
I had also made a phone call to my oncologist Dr. Brinker for a recommendation. But, I have yet to hear back from him. I will be seeing him tomorrow for my biopsy and possibly then we can get some information that might help us decide if Grand Rapids is even an option.
Right now I am just not sure what I should do next. I am not sure when my next stint in the hospital will be, that I am sure we will discuss with Dr. Brinker tomorrow. I had really been thinking about trying to go back to work even though Dr. Brinker would prefer that I not go back to work until all my treatment is completed. Now I have to consider what will be going on with Karlye and we are just going to have to see when the specialist is going to want to schedule surgery. We should know more in the next couple of days, by the end of the week I will have the results of my next bone marrow biopsy. We will know how effective the induction chemo was and I am sure Dr. Brinker will lay out all the possibilities of my continued treatment. I am just hoping to stay out of the hospital till after Christmas. But, if that happens I am sure it will be right after that I will be in the hospital for my six days of chemo.
Well, I think that is all for now. I have other things that I need to take care of. Later.
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