I was scheduled to go into the hospital on Monday, March 3, 2014 for my 3rd round of consolidation chemo. After calling Dr. Brinker and him looking over my blood work for the back 2 1/2 weeks he decided, and I agree, that we will wait until my counts are higher. We will continue blood work and see how things are at the end of next week.
Today I am still neutropenic. Which means that the white blood cells that fight infection are considered to low to do that job. We want this number, also called ANC (Absolute Neutrophil Count), to be above 1.0. Mine has been above that, but today it was 0.8. Since it is fluctuating we are going to wait and hope for some higher numbers by the end of next week.
Last time I was admitted for chemo my bone marrow was fluctuating and we went ahead and did chemo anyways. This has made it so that my bone marrow is taking longer to recover. As Dr. Brinker and I discussed it does no good to knock out my immune system if it takes weeks and weeks to recover and I end up back in the hospital because of it. We need the chemo to reset the bone marrow and for it to recover in a couple of weeks not a month or longer.
So for now this is the best decision for me. It will draw things out a little longer but hoping to be able to do the final round in 4 weeks instead of 7 or 8.
Friday, February 28, 2014
Thursday, February 27, 2014
Wishing Connor Myers success at state.
I have been meaning to write about this for a few day now and I am sorry that I have let life get in the way of telling this story.
Last Sunday during a phone conversation with Kris Myers her son Connor wanted to tell me something. So, as we talk he wanted me to know that he had taken it upon himself to call his coach and ask if they could add the symbol for Acute Myeloid Leukemia to his singlet. He explained to me that as a state qualifier he was able to design his uniform and that he asked his coach if it would be possible to add the orange ribbon that represents AML to the thigh of his singlet. To which his coach thought it would be possible. Connor told me that he wanted to add it to support me in my fight against AML. Now that is something that you don't suspect from someone so young and I am grateful for such an act of kindness.
Kris and Courtney Myers you have raised a fine young man! I know that he will do well in the state wrestling tournament this weekend! Go Connor!!
MHSAA
2014 Individual Finals Home
Last Sunday during a phone conversation with Kris Myers her son Connor wanted to tell me something. So, as we talk he wanted me to know that he had taken it upon himself to call his coach and ask if they could add the symbol for Acute Myeloid Leukemia to his singlet. He explained to me that as a state qualifier he was able to design his uniform and that he asked his coach if it would be possible to add the orange ribbon that represents AML to the thigh of his singlet. To which his coach thought it would be possible. Connor told me that he wanted to add it to support me in my fight against AML. Now that is something that you don't suspect from someone so young and I am grateful for such an act of kindness.
Kris and Courtney Myers you have raised a fine young man! I know that he will do well in the state wrestling tournament this weekend! Go Connor!!
MHSAA
2014 Individual Finals Home
Connor in his uniform.
Sunday, February 23, 2014
Thank you to the Community of Coloma and friends new and old!
I just want to thank everyone that came to the benefit today at North Berrien Fire and Rescue!
We can't thank everyone enough for all your generosity. I was able to be there for a couple of hours but could not stay for the whole time.
I know that I should not be surprised by the generosity of this community. It was so nice to see and talk with so many people. Some that I have not seen in a long time. I know that there were some I did not get a chance to talk to and thank personally and for that I am sorry.
I know that an event like this doesn't happen by itself and I want to thank everyone who was involved for taking the time out of their busy schedules to help with the benefit.
I know that I probably don't know all the people that are responsible for everything so I apologize for not mentioning you by name. But, I know that I wish to thank everyone that attended the breakfast. I also want to thank all the fire fighters that worked hard on the grill and behind the scenes making sure everyone got a delicious breakfast.
I would also like to thank the Meyers family and the Bell family. Both have put so much time and energy into helping make the benefit such a success.
I know that if it wasn't for the generosity of all of you that dealing with my illness and Karlye's would be so much harder. We have been blessed by everyone's generosity and it means a lot being in your thoughts and prayers.
My family thanks you from the bottom or our hearts!
We can't thank everyone enough for all your generosity. I was able to be there for a couple of hours but could not stay for the whole time.
I know that I should not be surprised by the generosity of this community. It was so nice to see and talk with so many people. Some that I have not seen in a long time. I know that there were some I did not get a chance to talk to and thank personally and for that I am sorry.
I know that an event like this doesn't happen by itself and I want to thank everyone who was involved for taking the time out of their busy schedules to help with the benefit.
I know that I probably don't know all the people that are responsible for everything so I apologize for not mentioning you by name. But, I know that I wish to thank everyone that attended the breakfast. I also want to thank all the fire fighters that worked hard on the grill and behind the scenes making sure everyone got a delicious breakfast.
I would also like to thank the Meyers family and the Bell family. Both have put so much time and energy into helping make the benefit such a success.
I know that if it wasn't for the generosity of all of you that dealing with my illness and Karlye's would be so much harder. We have been blessed by everyone's generosity and it means a lot being in your thoughts and prayers.
My family thanks you from the bottom or our hearts!
Thursday, February 13, 2014
Had a visit with Dr. Brinker today
Well I did get released from the hospital last Friday, February 7th. It has been nice to be home. They sent me home basically on the medications I was on before I went in the hospital. I was told that they didn't think I needed to continue the Neupogen shots and I have been taking it easy. Only really leaving the house to get my lab work done and when I do I wear a mask. I really don't want to end up back in the hospital.
I have been working and doing the things that I normally do like paying bills and taxes. Or at least trying to get my taxes done. I want to have these things done before I go back in the hospital for chemo.
My bone marrow is not responding like it did the last few times I had chemo. It is taking a long time for it to come around. My immune system is still compromised. It is just not producing or rebounding like we had hoped. My counts are staying flat. Just high enough not to need blood products but not rising.
My platelets have stayed at 23 all this week and all the other counts have stayed about the same. This is why I am keeping out of public as much as possible and when I do go in public I wear a mask.
I was worried that Dr. Brinker would want me to go back into the hospital too soon. But, I am relieved to say that we have decided to wait on my next round of chemo to at least March 3, 2014 and if my counts are not up at that time we will wait until they are closer to normal. So, I have two weeks for my bone marrow to hopefully get back to normal.
He also told us that he will be giving me a different shot when I leave the hospital next time that is like the Neupogen shots but last for two weeks. He hopes that by doing this my counts will not stay low as long. He is also considering changing the dosage of chemo he puts me through the next time. But we will see what happens when I go back in the hospital the next time.
Now I just wait for my bone marrow to start producing and try to stay healthy and out of the hospital in the mean time.
I have been working and doing the things that I normally do like paying bills and taxes. Or at least trying to get my taxes done. I want to have these things done before I go back in the hospital for chemo.
My bone marrow is not responding like it did the last few times I had chemo. It is taking a long time for it to come around. My immune system is still compromised. It is just not producing or rebounding like we had hoped. My counts are staying flat. Just high enough not to need blood products but not rising.
My platelets have stayed at 23 all this week and all the other counts have stayed about the same. This is why I am keeping out of public as much as possible and when I do go in public I wear a mask.
I was worried that Dr. Brinker would want me to go back into the hospital too soon. But, I am relieved to say that we have decided to wait on my next round of chemo to at least March 3, 2014 and if my counts are not up at that time we will wait until they are closer to normal. So, I have two weeks for my bone marrow to hopefully get back to normal.
He also told us that he will be giving me a different shot when I leave the hospital next time that is like the Neupogen shots but last for two weeks. He hopes that by doing this my counts will not stay low as long. He is also considering changing the dosage of chemo he puts me through the next time. But we will see what happens when I go back in the hospital the next time.
Now I just wait for my bone marrow to start producing and try to stay healthy and out of the hospital in the mean time.
Friday, February 7, 2014
So what has happened in January and February?
Friday February 7, 2014
So, it looks like I might be going home today! For those of you that are not on Facebook this will be some news to you.
I went into Butterworth for my second round of consolidation chemo on January 13th. My bone marrow was not really back into full production mode from my previous chemo. But, Dr. Brinker felt it was time to do the chemo again so we did. I got out on the 18th and all the while my bone marrow was going up and down but never really bouncing back like it had before. Dr. Brinker told my that my bone marrow was fatigued and that we might have to wait an additional week before we did the next round of consolidation chemo. Waiting five weeks instead of his scheduled four.
Almost as soon as I was released from Butterworth my immune system bottomed out and I was put on Neupogen shots to try to stimulate white blood cell production.
I had only had blood products 3 times between the first consolidation chemo and this consolidation chemo and I had come home with a PIC line that wasn't being used for blood draws. To me it was a risk as a source of infection and if I wasn't going to need it I wanted it out. Not to include the maintenance that we needed to do at home etc. So, when I left Butterworth I had them pull out the PIC line. That would turn out to be a bad decision or at least one where maybe I should have had them take that one out and put in another.
Since my bone marrow was fatigued Dr. Brinker warned my that I would need more blood products this time around and I would be more fatigued myself. Well he was definitely correct on that one. Little did either of us know how bad it would be this time.
I started on daily Neupogen shots January 21st and have been on them ever since. It hasn't been until the last few days that any production of white blood has occurred. But I am glad that my bone marrow is finally starting to respond somewhat. That is because my compromised immune system put me back into the hospital because I got a bacterial infection that my body could not fight.
So, on January 25th I ended up in the emergency room at Lakeland St. Joe at around 11:30 p.m. Out of Butterworth hospital for just a week I was back in another hospital for how long I did not know.
You see at around 9:30 p.m. I started getting chills and shaking. This happened to me before, the night before I ended up in the ICU with sepsis and both Cindy and I were a little nervous. My temperature started at 98.0 F at 9:30 and climbed to 100.7 F at 10:30. So at first we called Dr. Patel's service, who is being a satellite doc for Dr. Brinker, and got the doctor on call who told me to wait it out and see if it got better overnight. Cindy was like hell no you call Brinker's office and talk to them. Dr. O'Rourke told me I should go to an emergency room right away and so we headed to Lakeland St. Joe. We got here around 11:30 and I have been in the hospital ever since.
Of course they have had me on IV's and daily antibiotics along with blood transfusions and platelets. So many times that I lost count and I really can't keep it straight. The decision to pull the PIC line made this hospital stay very painful for me. They had problem after problem with getting IV's started I am bruised and it was really rough because the first week every blood draw was by needle and they all hurt.
Because of the fever, headache and my compromised immune system this meant that I couldn't get another PIC line put in until the fever was gone and my platelets were high enough that I would easily clot when one was put in. This magic day did not happen until Sunday, February 2nd. But I tell you I am so glad it did! There were several times that the PIC line nurses were in my room looking for veins that could support a PIC line and they were not finding very many choices. That was making me really nervous because I was at my wits end getting stuck with needles so many times. It has been nice having the PIC line back in and this one will need to stay until I am done with my chemo.
My immune system has been compromised for so long this time I and my doctors were wondering if it was going to recover. It still is not to a level were it can easily fight infection. But, it is on an upward trend and enough for them to consider letting me go home and give myself Neupogen shots. My bone marrow is still not producing platelets and red blood cells for hemoglobin that I need so there is going to be CBC test that are needed and more blood products. But, being out of the hospital will be nice.
My counts today after platelets on Wednesday and two pints of blood yesterday were are good today. My WBC is 0.7, hemoglobin 10.1, platelets 35 and ANC 0.5. We have been waiting for my WBC and more importantly my ANC to get to 0.5 with no fevers so I could go home and hopefully that will happen today if everything can be setup for me to continue my care from home. If not today tomorrow.
So that is what has been happening. I have been working remotely because I can do that from my hospital room and home. Which is filling my time and helping us financially. Although I am having to deal with some remote access issues which I hope will be resolved soon.
I have to say that through all this the scary part is not the chemo but what can happen when my immune system is compromised. I am lucky that we caught it early and got on large doses of antibiotics quickly. No idea were or how I got the bacteria and we never will. Just that is is gone and I am on the mend.
So, it looks like I might be going home today! For those of you that are not on Facebook this will be some news to you.
I went into Butterworth for my second round of consolidation chemo on January 13th. My bone marrow was not really back into full production mode from my previous chemo. But, Dr. Brinker felt it was time to do the chemo again so we did. I got out on the 18th and all the while my bone marrow was going up and down but never really bouncing back like it had before. Dr. Brinker told my that my bone marrow was fatigued and that we might have to wait an additional week before we did the next round of consolidation chemo. Waiting five weeks instead of his scheduled four.
Almost as soon as I was released from Butterworth my immune system bottomed out and I was put on Neupogen shots to try to stimulate white blood cell production.
I had only had blood products 3 times between the first consolidation chemo and this consolidation chemo and I had come home with a PIC line that wasn't being used for blood draws. To me it was a risk as a source of infection and if I wasn't going to need it I wanted it out. Not to include the maintenance that we needed to do at home etc. So, when I left Butterworth I had them pull out the PIC line. That would turn out to be a bad decision or at least one where maybe I should have had them take that one out and put in another.
Since my bone marrow was fatigued Dr. Brinker warned my that I would need more blood products this time around and I would be more fatigued myself. Well he was definitely correct on that one. Little did either of us know how bad it would be this time.
I started on daily Neupogen shots January 21st and have been on them ever since. It hasn't been until the last few days that any production of white blood has occurred. But I am glad that my bone marrow is finally starting to respond somewhat. That is because my compromised immune system put me back into the hospital because I got a bacterial infection that my body could not fight.
So, on January 25th I ended up in the emergency room at Lakeland St. Joe at around 11:30 p.m. Out of Butterworth hospital for just a week I was back in another hospital for how long I did not know.
You see at around 9:30 p.m. I started getting chills and shaking. This happened to me before, the night before I ended up in the ICU with sepsis and both Cindy and I were a little nervous. My temperature started at 98.0 F at 9:30 and climbed to 100.7 F at 10:30. So at first we called Dr. Patel's service, who is being a satellite doc for Dr. Brinker, and got the doctor on call who told me to wait it out and see if it got better overnight. Cindy was like hell no you call Brinker's office and talk to them. Dr. O'Rourke told me I should go to an emergency room right away and so we headed to Lakeland St. Joe. We got here around 11:30 and I have been in the hospital ever since.
Of course they have had me on IV's and daily antibiotics along with blood transfusions and platelets. So many times that I lost count and I really can't keep it straight. The decision to pull the PIC line made this hospital stay very painful for me. They had problem after problem with getting IV's started I am bruised and it was really rough because the first week every blood draw was by needle and they all hurt.
Because of the fever, headache and my compromised immune system this meant that I couldn't get another PIC line put in until the fever was gone and my platelets were high enough that I would easily clot when one was put in. This magic day did not happen until Sunday, February 2nd. But I tell you I am so glad it did! There were several times that the PIC line nurses were in my room looking for veins that could support a PIC line and they were not finding very many choices. That was making me really nervous because I was at my wits end getting stuck with needles so many times. It has been nice having the PIC line back in and this one will need to stay until I am done with my chemo.
My immune system has been compromised for so long this time I and my doctors were wondering if it was going to recover. It still is not to a level were it can easily fight infection. But, it is on an upward trend and enough for them to consider letting me go home and give myself Neupogen shots. My bone marrow is still not producing platelets and red blood cells for hemoglobin that I need so there is going to be CBC test that are needed and more blood products. But, being out of the hospital will be nice.
My counts today after platelets on Wednesday and two pints of blood yesterday were are good today. My WBC is 0.7, hemoglobin 10.1, platelets 35 and ANC 0.5. We have been waiting for my WBC and more importantly my ANC to get to 0.5 with no fevers so I could go home and hopefully that will happen today if everything can be setup for me to continue my care from home. If not today tomorrow.
So that is what has been happening. I have been working remotely because I can do that from my hospital room and home. Which is filling my time and helping us financially. Although I am having to deal with some remote access issues which I hope will be resolved soon.
I have to say that through all this the scary part is not the chemo but what can happen when my immune system is compromised. I am lucky that we caught it early and got on large doses of antibiotics quickly. No idea were or how I got the bacteria and we never will. Just that is is gone and I am on the mend.
Sorry it has been so long for an update.
Well I really have neglected this blog for quite a while. Most of my post have been on Facebook so I will just hit some highlights and try to get up-to-date.
Karyle is doing well and recovering from her surgery. She has seen an Endocrinologist and we are planning for her to get radioactive iodine therapy while on spring break. She is on a 25 lb lifting restriction from the surgery. It has been awhile since we have seen her surgeon for follow up. So, we might need to see a physical therapist to help with the lifting restriction.
I want to get this blog back onto my cancer journey. We have been dealing with so many other issues. Financial, vehicle etc. It has all been a little overwhelming at times. If it wasn't for the help of our friends we couldn't have made it through it and we thank them so much for all their help.
Let's just say these distractions have left little time for blog updates and even less time to deal with my situation.
We came back from Chicago and spent the holidays together and I made it to my second round of consolidation chemo. That is where I think I will pick this up and go from there.
Karyle is doing well and recovering from her surgery. She has seen an Endocrinologist and we are planning for her to get radioactive iodine therapy while on spring break. She is on a 25 lb lifting restriction from the surgery. It has been awhile since we have seen her surgeon for follow up. So, we might need to see a physical therapist to help with the lifting restriction.
I want to get this blog back onto my cancer journey. We have been dealing with so many other issues. Financial, vehicle etc. It has all been a little overwhelming at times. If it wasn't for the help of our friends we couldn't have made it through it and we thank them so much for all their help.
Let's just say these distractions have left little time for blog updates and even less time to deal with my situation.
We came back from Chicago and spent the holidays together and I made it to my second round of consolidation chemo. That is where I think I will pick this up and go from there.
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