Happy Holidays to everyone. I hope that the new year brings you health and good fortune!!

Life is ever changing.

I know that I have not posted in a long time. Mostly because I had not found the time to do so. I have been back to work since June and busy with home and family. Like I was mostly before being diagnosed with AML.

I began this blog in an attempt to help myself express what was going on with dealing with cancer and all the STUFF that comes with it. I had also hoped that it might in some way help others that might be in similar situations. I still do hope that and would like to say if anyone needs my help dealing with this disease please feel free to contact me.

I might not be posting very often because of being busy living the normal life that I missed so much while I was in the hospital and getting chemo. That is a good thing. Life being back to normal.

So what is going on with me now. I have been back to work 8 months, the same amount of time I was off. It is hard to believe that it has been 1 year and 4 months since I was diagnosed. So much has changed and I have changed. I would say that the one great thing that has come out of all of this is that my faith in people has grown. I have experienced the kindness and understanding of so many people. Friends, family and strangers. And without all of them and you I would not be here today. For that I would like to say Thank You!

We have put an offer in on a house! An exciting and scary situation. We are excited because we have lived in a manufactured home for 24 years. They have been good years. We raised a family here and have had the normal ups and downs. But, we can't do some of the things that we would like and we came across a foreclosure that needs work. But it seems to have good bones and Cindy and I know that we can make it a nice home.

The house is a walk out ranch on 4.7 acres. It has a two car attached garage and a pole barn. It is a nice house, but, it needs work. It needs painting inside and out. The pole barn is in disrepair and needs some major rehabbing. It needs a whole new kitchen. Not because it is dated. Because it is not there. Most of the cabinets are missing. Taken out by the previous tenants I guess.

The previous owner was a do it yourselfer. But not a very good one. I am sure that I will have to contend with many surprises that he has left along the way.

There is lots to do and Cindy and I have agreed that we will take on the challenge of remodeling. We have done some nice work here. We rebuilt our master bath and bedroom from the floor joist and studs. We had some good help doing it also. Thanks to Steve and Deedee. But it was hard work and long hours.

But, we absolutely love how it has turned out. We will miss our master bath. We made it perfect for us and the tile, cabinets and oak trim make it beautiful. We will not have that in the new house. Not for a long time. Because the focus will need to be on so much other stuff. But we will make it beautiful and eventually we will get the bathrooms the way we would like them to be.

Well, there is lots to do and I need to get doing it. Thanks to all of you that have read this blog and followed our journey. I will post from time to time... until then have a blessed life and live everyday to the fullest.

Thanks.

It has been awhile...

I know it has been awhile since I have posted to my blog. Last I posted I was going through my last round of chemo and thinking about what changes I would like to make with my life going forward. I would like to update everyone on what has transpired over the last month and a half.

I finished my last round of chemo and as expected I did nadir out not too soon after. This last round of chemo really kicked my butt.  I was very tired many days and my body has shown the fatigue of six rounds of chemo.  Dr. Brinker has told me that it could take up to a year for me to regain my strength that I have lost from the treatments and lack of exercise.  In addition to the steroids causing me to gain weight.  I think I am now the heaviest I have ever been in my life.  This is something that I will be working on as my strength comes back and my body gets back to normal.  Again because hemoglobin plays a big part getting oxygen to the organs and muscles and Dr. Brinker told me it could take up to a year for that to get back into the normal range.  It might take some time for my body to recover to where I would like it to be.  But, I will be working on it.

Five days after this last round of chemo I had nadired out and had to receive my first blood transfusion. In the 3 weeks that followed I received Blood twice and platelets twice.  Before my counts started coming back up.  The last few weeks have not been easy.  I have been experiencing pain in my right hip that seemed to start after a bone marrow biopsy I had while I was in the hospital last year.  It has become more frequent and there is also numbness along my thigh down to my knee.  Not sure if they hit a nerve or what.  I am hoping to find out soon as I have made an appointment with Dr. Mayle on Monday to see what can be done.

Unfortunately the pain in my hip doesn't allow me to do a lot of walking and at times I do end up taking meds for the pain.  It is just something I am going to have to live with for now.

Happily after I was released from the hospital after my last round of chemo.  We were able to find a car for Karlye and she is practicing to be able to take her road test.  She was very happy and we are happy for her. She has been through alot over the last six months and really deserves it.

We were able to enjoy some family time over Memorial Day weekend and did do some camping with Tara, Steve and the grandbabies.  I really enjoyed the weekend and I did not get winded like I did my last camping trip before we found out I had leukemia.  Although my hip did keep me from doing a few things.

On Thursday May 22, 2014 I had a bone marrow biopsy.  Because of the holiday we were told that Dr. Brinker would call with the results on Tuesday of the following week.  Well, Tuesday came and went and no call.  I decided I could give him some time and thought maybe he might call on Wednesday.  No call on Wednesday.  So a call to the office Thursday to remind them that I would like my results.  In part because he told us when I had the biopsy that I could go back to work the beginning of June and I am trying to make that happen.

Dr. Brinker did call last night.  There is good news and I guess I would call it confusing news.  He did tell me that I am leukemia free.  That there is no signs of leukemia!!  That we will do blood work once a month and I will follow up with him every 3 months over the next year.

The confusing part and something that he says we will have to watch.  Is that, he said the reason the results took so long was because there is a protein in my bone marrow that attaches itself to my white blood cells. That the protein is causing there to be about 5 percent immature white blood cells being produced.  It is not something that I fully understand.  I even asked for him to explain it twice.  He said it was something we will have to keep on eye on.  That was the reason the results took so long.  In part because they re-ran the test a couple times.  He did also add that because of the sensitivity of the test that they perform.  It does get some results that they did not get in years past.  I am still not sure if these immature white blood cells are being released into my blood stream and what impact that will have on my overall health?  But, he did tell me that I need to look for the same signs that I was experiencing when I was diagnosed and to call him if I do.

So, good news for the most part.  Today is Friday and it is my last Friday and weekend of freedom before I return to work.  As long as the paperwork gets done I am returning to work next Tuesday June 3rd.  So for now it is back to a more normal life.  I am still a little apprehensive as I would like more information as to what is to follow.  Maybe if Dr. Brinker would not have mentioned the word "chemo" while trying to explain the protein situation?  Anyways.  He did stress that I was leukemia free and that is what I will focus on for now.  I will get more information in August when I go for follow up.

Now I need to see what I can get done before I go back to work.  LOL!

Imagining the possibilities.

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.

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.

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!

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!