Yet another day that I am up around 6:30. For some reason the desire to sleep in is just not there and I must still be on my outage schedule. Cindy is up early because it's a school day and she is taking Karlye to school at 7:00. I get up and get my coffee and sit down in the living room with her laptop. More research and more questions to get answers to or find out if anything gives me questions that I want to ask Dr. Brinker during our appointment. I don't have the luxury of sitting around on the computer for too long so I don't. I get in the shower and get ready to leave. I then start checking the suitcase that Cindy packed yesterday and make sure that I have what I think I will need during my hospital stay. Of course this includes all the electronic stuff. The laptop, iPad, Kindle and my phone along with all the chargers for everything. Little did I know that there wasn't going to be a lot of time to get bored in the hospital.
We leave around 9:30 and I want donuts. So, we stop by Wesco and Cindy gets a drink. I actually remember seeing Courtney Meyers in there. We say Hi. How you doing? Like it is a normal day. I know that neither one of us has time for me to go into any detail about being told I have Acute Leukemia recently. Besides we will be late for out appointment as it is if we don't get moving.
I don't remember all the details of what we talked about on the way up to Grand Rapids.
When we get to Brinkers office we have to wait a little while. I can tell that Cindy is nervous and we are seeing a lot of cancer patients. More that we had seen on Friday. They call me back to draw blood for a CBC. It is like an assembly line. One after another they are drawing blood from people and I remember telling Cindy just that "It is like an assembly line for people with cancer." My heart gets heavy because I realize that there are a lot of people suffering and dealing with cancer. Way more than I could have ever realized.
I can't remember what time we finally get called back but I would guess we had to wait at least 15 min past our appointment time. We go back and they do the basic weight, temperature and blood pressure and take us to a room to wait for Dr. Brinker. It is not too long before he comes in.
He had stated on the phone. "There is a possibility that the biopsy will come back negative even now. I would have egg on my face. But, you wouldn't have AML and that would be good for you." So, one of the first things he says is that the diagnoses has been confirmed and I have AML. Not a surprise. He did say that he was still waiting on results from the test and that he wanted a pathologist to put the diagnoses in writing before he started to treat me with chemo.
I remembered that one of the suggestions that I read online was to tape record the conversations with your doctor. Just so you can remember or go back to what they say. They put out so much information and it is hard to remember it all even when you have someone with you. For some reason I don't ask and I wish I would have. But, here is the basics of what I remember from the conversation.
He tells me that he doesn't have any clinical trails available for me to participate in and that his course of action is a standard 7 + 3 chemo. He tells me I will be in the hospital a minimum of 4 weeks and I could be in the hospital 6 to 8 weeks depending on how I respond to the chemo. He adds that "every time I have to give you a round of chemo it resets the clock and it is another 4 weeks from that point."
The chemo drugs.
The chemo drugs used most often to treat AML are cytarabine (cytosine arabinoside or ara-C) and the anthracycline drugs (such as daunorubicin/daunomycin, idarubicin, and mitoxantrone).
He decides that I will get Cytarabine in continuous IV for 7 days and Daunorubicin in what they call "pushes" one time a day for the first 3 days. I will detail the interesting facts about these drugs later.
He tells me that after admission I will have to have a Muga scan which is a nuclear medicine test of the heart. To see how healthy my heart is to begin with and there will be one done when I am done with the chemo. He explains that Daunorubicin is a real nasty drug and it can affect the muscle tissues in the heart. Great. The treatment is just as bad as the illness. You can read more about the test itself here.
He also tells me that within 24 hours I will have a PIC line installed in my arm. This will allow them to give me the chemo and take blood etc. easier than poking me with needles all the time. He explains that they make an incision on my right arm and run a catheter in my vein to just above my heart. That it will have two ports on it so that they can give me chemo and take blood samples and give me other drugs through the other port. Funny thing is that when he said catheter I was thinking he was going to do a urinary catheter and I really wasn't wanting anything to do with that. So, that was one of my questions. He said. As long as I was able to walk and be independent there would be no need for a urinary catheter. Boy that was a relief.
He details the possible scenarios. Seven days of chemo, seven days off and then a bone marrow biopsy. If the bone marrow biopsy comes back and shows no myeloblast (immature white blood cells that normally reside in the bone marrow. But, have migrated to the blood stream... Leukemia) then no more chemo and the process of getting my counts up to leave the hospital begins. If the biopsy shows that the Leukemia has been reduced but not totally gone. We might wait a week and let the chemo work some more and then do another biopsy. If the biopsy shows a little reduction in the myeloblast then another round of chemo and another 4 weeks. If there is an increase then he says. "I have picked the wrong chemo drugs and we have to start all over." This whole process is called "Induction" it basically kills the leukemia and resets the bone marrow but it is not called being in remission.
So, after all this and the not knowing how my body will react to the chemo and not knowing how long I will be in the hospital he starts to detail what happens in the next phase of treatment.
He tells me after the "induction" then we start the process of making sure we put the leukemia into remission or what is called "post-remission treatment". He tells me that this can go in one or two directions. The first would be after getting out of the hospital from the induction treatment. I would wait 3 weeks and then go back into the hospital for 5 days and undergo intensive chemo treatments. High doses of Cytarabine twice a day for 3 of the days. One day on and one day off and repeat for the five days. Then home and wait another 3 weeks and do the process all over again. This would happen 4 times over 4 months. So, what are the draw backs. Every time they give you chemo then you have the possible side affects that are too numerous to list and it knocks your bone marrow down to nothing. Like a hard reset. Which also means that there will be CBC (Complete Blood Count blood work), blood transfusion and platelets. Now I am wondering how I am going to be feeling during this process.
The second scenario is that I go through two rounds of post treatment chemo and then have a bone marrow transplant. He really doesn't explain the transplant process. But, he then tells me that I will be off work for 6 months and if I need a bone marrow transplant I could be off 9 months to a year. This is not good for our financial situation which I will detail later.
So, he gets done with all this information and ask me if I have any questions. With so many what ifs I don't really know what to ask. So, he says most people want to know how long they have to live. So, he says. "I don't know the answer. What I do know is that if you don't get treatment you have 4 to 6 months to live. That most people that decide not to do chemo keep getting blood transfusions until at some point they just stop showing up for the blood transfusion and decide to die." Nice. Just what I wanted to hear. Funny thing is that I never considered not getting treatment. For one I am to ornery to give up that easily and besides that my wife and kids wouldn't let me make that decision.
He tells us that he want me to be admitted to the hospital. But, if I needed a day or two I could take it. He did not recommend me waiting past Wednesday to be admitted to the hospital. This is different than what he told us Friday and over the weekend. He adds that sometimes there isn't a bed available right away and we would have to deal with the admission process through his schedulers. He didn't deal with that stuff. But, he also tells us that it is not necessary for us to wait until six or seven tonight for a room. That we can come back tomorrow for admission. We are done so he points us in the direction of the schedulers and we proceed to that area for help.
On of the phone calls I make over the weekend is to my insurance company. I explain my situation and that I have been diagnosed with AML and that my doctor is recommending hospitalization. The representative on the phone says. "Make sure that they get pre-authorization before they admit you." If they don't then you could be financially responsible for the whole stay.
We are given so much information and my head is just kind of spinning from it all. I tell Cindy. "Man I wish I would have ask him to record that conversation. I don't know why I didn't. I should have and I am not going to make that mistake again."
So, we sit down with a scheduler and tell her that Dr. Brinker is recommending hospitalization and chemo. She calls bed management at Butterworth and they tell her there are no rooms available. That they are waiting on patients to be discharged and that probably will not happen to around 5 or 6 and there are two other people ahead of me on the list. I tell the scheduler that I am not waiting around for a what if, that I can wait until tomorrow to be admitted. Bed management tells us that it would be better if I waited and that I would be the first one on the list for tomorrow. That I would get a call between 8 and 9 on Tuesday with a room number and a time that it would be available. I was alright with that. I would get an extra nights sleep in my own bed and an opportunity to get some more things done before I go into the hospital.
I then tell the scheduler that my insurance company has stressed to me that I make sure that this office gets a pre-authorization before I am admitted to the hospital. This is new to her and so we spend about 15 minutes waiting on her to make phone calls and find out when the pre-authorization was going to be done. She finds out that is part of the admission process and it will be taken care of before I am admitted. This is a load off my chest as I am starting to worry about the financial consequences of my illness and how this is going to affect my family.
We leave the office and we are hungry so we eat at a cafe on the third floor where Dr. Brinker's office is located. We talk. I remember that even with both of us there, there were parts of the conversation that we couldn't remember and how mad I was that I didn't ask him to record the conversation. After lunch we head home and I start checking on stuff like making sure that my beneficiaries on my life insurance policies are correct and up to date. That the beneficiaries on my 401K is setup correctly. Going over bills and the bank account information with Cindy. At least I have the rest of today and at least the morning tomorrow to take care of last minute things.
He details the possible scenarios. Seven days of chemo, seven days off and then a bone marrow biopsy. If the bone marrow biopsy comes back and shows no myeloblast (immature white blood cells that normally reside in the bone marrow. But, have migrated to the blood stream... Leukemia) then no more chemo and the process of getting my counts up to leave the hospital begins. If the biopsy shows that the Leukemia has been reduced but not totally gone. We might wait a week and let the chemo work some more and then do another biopsy. If the biopsy shows a little reduction in the myeloblast then another round of chemo and another 4 weeks. If there is an increase then he says. "I have picked the wrong chemo drugs and we have to start all over." This whole process is called "Induction" it basically kills the leukemia and resets the bone marrow but it is not called being in remission.
So, after all this and the not knowing how my body will react to the chemo and not knowing how long I will be in the hospital he starts to detail what happens in the next phase of treatment.
He tells me after the "induction" then we start the process of making sure we put the leukemia into remission or what is called "post-remission treatment". He tells me that this can go in one or two directions. The first would be after getting out of the hospital from the induction treatment. I would wait 3 weeks and then go back into the hospital for 5 days and undergo intensive chemo treatments. High doses of Cytarabine twice a day for 3 of the days. One day on and one day off and repeat for the five days. Then home and wait another 3 weeks and do the process all over again. This would happen 4 times over 4 months. So, what are the draw backs. Every time they give you chemo then you have the possible side affects that are too numerous to list and it knocks your bone marrow down to nothing. Like a hard reset. Which also means that there will be CBC (Complete Blood Count blood work), blood transfusion and platelets. Now I am wondering how I am going to be feeling during this process.
The second scenario is that I go through two rounds of post treatment chemo and then have a bone marrow transplant. He really doesn't explain the transplant process. But, he then tells me that I will be off work for 6 months and if I need a bone marrow transplant I could be off 9 months to a year. This is not good for our financial situation which I will detail later.
So, he gets done with all this information and ask me if I have any questions. With so many what ifs I don't really know what to ask. So, he says most people want to know how long they have to live. So, he says. "I don't know the answer. What I do know is that if you don't get treatment you have 4 to 6 months to live. That most people that decide not to do chemo keep getting blood transfusions until at some point they just stop showing up for the blood transfusion and decide to die." Nice. Just what I wanted to hear. Funny thing is that I never considered not getting treatment. For one I am to ornery to give up that easily and besides that my wife and kids wouldn't let me make that decision.
He tells us that he want me to be admitted to the hospital. But, if I needed a day or two I could take it. He did not recommend me waiting past Wednesday to be admitted to the hospital. This is different than what he told us Friday and over the weekend. He adds that sometimes there isn't a bed available right away and we would have to deal with the admission process through his schedulers. He didn't deal with that stuff. But, he also tells us that it is not necessary for us to wait until six or seven tonight for a room. That we can come back tomorrow for admission. We are done so he points us in the direction of the schedulers and we proceed to that area for help.
On of the phone calls I make over the weekend is to my insurance company. I explain my situation and that I have been diagnosed with AML and that my doctor is recommending hospitalization. The representative on the phone says. "Make sure that they get pre-authorization before they admit you." If they don't then you could be financially responsible for the whole stay.
We are given so much information and my head is just kind of spinning from it all. I tell Cindy. "Man I wish I would have ask him to record that conversation. I don't know why I didn't. I should have and I am not going to make that mistake again."
So, we sit down with a scheduler and tell her that Dr. Brinker is recommending hospitalization and chemo. She calls bed management at Butterworth and they tell her there are no rooms available. That they are waiting on patients to be discharged and that probably will not happen to around 5 or 6 and there are two other people ahead of me on the list. I tell the scheduler that I am not waiting around for a what if, that I can wait until tomorrow to be admitted. Bed management tells us that it would be better if I waited and that I would be the first one on the list for tomorrow. That I would get a call between 8 and 9 on Tuesday with a room number and a time that it would be available. I was alright with that. I would get an extra nights sleep in my own bed and an opportunity to get some more things done before I go into the hospital.
I then tell the scheduler that my insurance company has stressed to me that I make sure that this office gets a pre-authorization before I am admitted to the hospital. This is new to her and so we spend about 15 minutes waiting on her to make phone calls and find out when the pre-authorization was going to be done. She finds out that is part of the admission process and it will be taken care of before I am admitted. This is a load off my chest as I am starting to worry about the financial consequences of my illness and how this is going to affect my family.
We leave the office and we are hungry so we eat at a cafe on the third floor where Dr. Brinker's office is located. We talk. I remember that even with both of us there, there were parts of the conversation that we couldn't remember and how mad I was that I didn't ask him to record the conversation. After lunch we head home and I start checking on stuff like making sure that my beneficiaries on my life insurance policies are correct and up to date. That the beneficiaries on my 401K is setup correctly. Going over bills and the bank account information with Cindy. At least I have the rest of today and at least the morning tomorrow to take care of last minute things.
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