As I go through this last round of chemo I am starting to think about some of the decisions I have made in my life. Looking to make some changes I think. Or at least think of the possibilities.
Karlye is 17 almost 18 and because of life situations and our illnesses she does not have her drivers license. As a father and parent this has really started bothering me lately. We are actively looking for a vehicle for Karlye. I think she deserves that freedom and responsibility. We have looked at a few. But, still hoping that God will provide something that will be in our price range. Which is not much. I am even willing to work on something to fix it up if needed.
Which would bring us to our other possible pipe dream. Which would be a home where I could work on a car and we could do other things that we would like to do. After living in a single wide trailer in a trailer park for over twenty years I am starting to think it is about time to be able to live with a little less restriction.
I have to admit that the park manager has been really good to us and has helped us and let us use his pole barn for some of our major car repairs. But it is just not the same as having your own garage to do that work. We have out grown our little happy home. We have things in storage that we have not even seen in a couple years. We store our camper in a nice storage lot. But again it is not right there so I can do repairs on it and we can easily get it ready for a trip. Or just use it to camp with the grandkids in the back yard. (No back yard.)
We want to be able to have all our stuff together. To be able to plant a garden or have a bon fire. Things you just can't do in a trailer park.
We have done some major home renovations in the past and I like to build things. I know I have the ability and the tools to do most any home remodel/construction project that we could imagine, and afford. As long as we had some land I could build storage or a workshop on down the line. We could possibly add on if we needed a little more space. As long as the home gave us that possibility to begin with.
I am not sure if God has this in my plans but I am hoping that he does. I just think of all those situations where I would be able to help others. While also being able to help and provide for my family.
Friday, April 18, 2014
Thursday, April 17, 2014
3rd day of last round of chemo.
It is the 3rd day of the last round of chemo and so far so good. My counts are actually coming up this week. Just in time for them to be knocked down again! But that is what we want.
Since it has been told to me twice the plan is for me to get out of here Sunday afternoon (Easter). Then Monday blood work and Neulasta shot at Lakeland in St. Joe. Same as before blood work three times a week and blood and platelets when needed. In about 7 to 14 days. If all goes like last time that will be good.
Dr. Brinker and I talked this morning and he said I can plan on going back to work the beginning of June. As long as everything goes like last round. I will leave the hospital and hopefully a week to ten days later I will nadir out and get blood and platelets and then my bone marrow will start to recover in about a week after that. It will continue to recover to a point where Dr. Brinker feels it is time for a bone marrow biopsy. We will get the results back from that and if all is well, as it should be, I will go to blood work every 6 weeks and office visits every 3 months. That is unless something happens and I am not feeling well and we have a reason for extra blood work etc.
So I am starting to plan on going back to work. Physically I mean. I have been working from home for awhile now. Now I have to get things at the house done before I don't have as much freedom to do things under my schedule. Along with just thinking about being back at work. My JOB for the last 7 months has been my illness. By June I will have been off site for 8 months. That is a long time.
I am sure there is much waiting for me to catch up on. Although working remotely will make that transition a little easier. I have missed some training and I know I have much to make up. Between NANTEL and Continuing training I could be out in training for a couple weeks easily.
I am so looking forward to feeling better. I am getting a taste of it now even though the chemo is flowing. My counts are up close to a normal range and I am wanting to do stuff outside in all this nice weather that we are going to have. I am not looking forward to the next crash. But, I am praying it is the last one I will have to deal with.
Now I am starting to think about planning some camping trips and hopefully a nice vacation in July. Not sure where we should go yet. But hoping to figure something out soon. Funny thing is now I am looking at having to put in for vacation time. LOL.
It will be nice not to be getting blood work ever other day and to be able not to have a PIC line sticking out of my arm. Maybe without all the blood test I will feel more like a normal person.
I am sure there is much waiting for me to catch up on. Although working remotely will make that transition a little easier. I have missed some training and I know I have much to make up. Between NANTEL and Continuing training I could be out in training for a couple weeks easily.
I am so looking forward to feeling better. I am getting a taste of it now even though the chemo is flowing. My counts are up close to a normal range and I am wanting to do stuff outside in all this nice weather that we are going to have. I am not looking forward to the next crash. But, I am praying it is the last one I will have to deal with.
Now I am starting to think about planning some camping trips and hopefully a nice vacation in July. Not sure where we should go yet. But hoping to figure something out soon. Funny thing is now I am looking at having to put in for vacation time. LOL.
It will be nice not to be getting blood work ever other day and to be able not to have a PIC line sticking out of my arm. Maybe without all the blood test I will feel more like a normal person.
Tuesday, April 15, 2014
Packing.
I just wanted to let everyone know that I am headed back into the hospital for what is hopefully my LAST round of chemo. Packing and getting ready this morning and will be there by early afternoon. I am hopeful that this will be my last hospital stay in dealing with this illness!
It however will not be the last time that I need to see doctors etc. After this round, like the rest, I will need blood work three times a week. I will also need blood transfusions and platelets. But, I hope that will come and go without any surprises.
I hope all is well with all of you today!
It however will not be the last time that I need to see doctors etc. After this round, like the rest, I will need blood work three times a week. I will also need blood transfusions and platelets. But, I hope that will come and go without any surprises.
I hope all is well with all of you today!
Sunday, April 13, 2014
Updates on Karlye and I.
Well, Karlye had her radioactive iodine treatment over spring break. I am sure it was tough for her to be in isolation for 4 days. But, she made it through it. It was just a step in her treatment and it doesn't tell us much. More like a baseline to begin with after the surgery.
When I talked with Dr. Cohen last Monday he gave me the report over the phone. It basically said that there was uptake in the neck. Which means that the radioactive iodine went to thyroid and cancer tissue that was left after the surgery. This is what is expected. The radiation is supposed to kill what is left.
What I didn't expect is that the report also said there was uptake in the upper abdomen. Dr. Cohen explained that there could have been some food in here system that could have caused this on the scan. He did not seem concerned about it but did say we will have to keep an eye on this in future scans.
For now we are still working on getting Karlye's Synthroid dosage correct. This is a long process because we have to wait 6 weeks to make any changes. Our next visit with Dr. Cohen will be in July and he wants to do an ultra sound of the neck at that time.
We have been told that Karlye will have to do the radioactive iodine and scan again in 6 months. I think that is when we will know how successful the surgery and the first radioactive iodine treatment was.
I have been through my 3rd round of consolidation chemo and I seem to have made it through the period where I nadir out after chemo. That is the time when my immune system bottoms out and I can't fight infections. This round I did have to have two blood transfusions with platelets and one day of platelets.
I had an appointment with Dr Brinker on April 4th, the day after Karlye's scan, and we talked about the next and hopefully final round of chemo. The plan is for me to go back in the hospital on Tuesday the 15th for the 4th round of consolidation chemo. Same dosage as the last time and same game plan. Meaning that I will get a Nuelasta shot after this round and hopefully I will recover like I did the last time.
He seems confident that everything will go well and even started discussing the steps after this round of chemo. So the plan is to go through this round, nadir our in seven to 14 days, get blood and platelet transfusions during that time and check my counts 3 times a week. When my blood work shows that my bone marrow has recovered and is back in the normal range we will do a bone marrow biopsy to confirm that the leukemia is not present, you are not considered to be in remission until you have gone five years without a positive bone marrow biopsy. If all goes well that would be the end of May or beginning of June.
After that my blood work will go to every six weeks and I will see Dr. Brinker every 3 months. He also told me if it becomes to much of a hassle for me to see him that I could just follow up with Dr. Patel locally. It was more like once we are done with the bone marrow biopsy he could move on to other patients that need him more than I do. LOL.
Right now I am not sure if we will be on track with our plan. That is because my counts have been dropping over the past week. Monday's blood work will determine if my next round of chemo is next week. My WBC (white blood cells) have been dropping along with my hemoglobin and ANC (absolute neutrophil count - white blood cells that fight infection). Although my counts are still high enough that I do not need any transfusions. I want to be closer to normal before I go through another round of chemo. So, if they are still low on Monday I will have to talk with Dr. Brinker and we will have to hold off a week or so and see how my bone marrow recovers.
Good news will be that when I go through my last round of chemo and get through the nadir out period and my bone marrow recovers. I can go back to work. Something that seemed like a pipe dream for so long now. I so want to feel better. That has been one of the toughest parts of this illness, besides the chemo, ICU etc., not having the energy to do things. Or having low platelets and knowing that I need to take it easy and should not do much. I learned several times that my body will pay for it if I don't take it easy.
It will be nice to have the energy to exercise and do things that I would like to do. But, for now I am looking forward and thinking about the things that I need to take care of during this recovery time. Things that will be tougher to do once I am back to work and a somewhat normal life.
Well that is the update. I know that I have not posted in awhile but it is surprising how long it takes for blood work and then dealing with all the medical bills. I am still trying to get things straightened out with Lakeland. I will try to keep this updated a little better in the future. I hope all is well with everyone that does follow my blog and that you all are enjoying this burst of spring weather!
When I talked with Dr. Cohen last Monday he gave me the report over the phone. It basically said that there was uptake in the neck. Which means that the radioactive iodine went to thyroid and cancer tissue that was left after the surgery. This is what is expected. The radiation is supposed to kill what is left.
What I didn't expect is that the report also said there was uptake in the upper abdomen. Dr. Cohen explained that there could have been some food in here system that could have caused this on the scan. He did not seem concerned about it but did say we will have to keep an eye on this in future scans.
For now we are still working on getting Karlye's Synthroid dosage correct. This is a long process because we have to wait 6 weeks to make any changes. Our next visit with Dr. Cohen will be in July and he wants to do an ultra sound of the neck at that time.
We have been told that Karlye will have to do the radioactive iodine and scan again in 6 months. I think that is when we will know how successful the surgery and the first radioactive iodine treatment was.
I have been through my 3rd round of consolidation chemo and I seem to have made it through the period where I nadir out after chemo. That is the time when my immune system bottoms out and I can't fight infections. This round I did have to have two blood transfusions with platelets and one day of platelets.
I had an appointment with Dr Brinker on April 4th, the day after Karlye's scan, and we talked about the next and hopefully final round of chemo. The plan is for me to go back in the hospital on Tuesday the 15th for the 4th round of consolidation chemo. Same dosage as the last time and same game plan. Meaning that I will get a Nuelasta shot after this round and hopefully I will recover like I did the last time.
He seems confident that everything will go well and even started discussing the steps after this round of chemo. So the plan is to go through this round, nadir our in seven to 14 days, get blood and platelet transfusions during that time and check my counts 3 times a week. When my blood work shows that my bone marrow has recovered and is back in the normal range we will do a bone marrow biopsy to confirm that the leukemia is not present, you are not considered to be in remission until you have gone five years without a positive bone marrow biopsy. If all goes well that would be the end of May or beginning of June.
After that my blood work will go to every six weeks and I will see Dr. Brinker every 3 months. He also told me if it becomes to much of a hassle for me to see him that I could just follow up with Dr. Patel locally. It was more like once we are done with the bone marrow biopsy he could move on to other patients that need him more than I do. LOL.
Right now I am not sure if we will be on track with our plan. That is because my counts have been dropping over the past week. Monday's blood work will determine if my next round of chemo is next week. My WBC (white blood cells) have been dropping along with my hemoglobin and ANC (absolute neutrophil count - white blood cells that fight infection). Although my counts are still high enough that I do not need any transfusions. I want to be closer to normal before I go through another round of chemo. So, if they are still low on Monday I will have to talk with Dr. Brinker and we will have to hold off a week or so and see how my bone marrow recovers.
Good news will be that when I go through my last round of chemo and get through the nadir out period and my bone marrow recovers. I can go back to work. Something that seemed like a pipe dream for so long now. I so want to feel better. That has been one of the toughest parts of this illness, besides the chemo, ICU etc., not having the energy to do things. Or having low platelets and knowing that I need to take it easy and should not do much. I learned several times that my body will pay for it if I don't take it easy.
It will be nice to have the energy to exercise and do things that I would like to do. But, for now I am looking forward and thinking about the things that I need to take care of during this recovery time. Things that will be tougher to do once I am back to work and a somewhat normal life.
Well that is the update. I know that I have not posted in awhile but it is surprising how long it takes for blood work and then dealing with all the medical bills. I am still trying to get things straightened out with Lakeland. I will try to keep this updated a little better in the future. I hope all is well with everyone that does follow my blog and that you all are enjoying this burst of spring weather!
Subscribe to:
Posts (Atom)