Last I left you...

Well the last I wrote in my blog was that we were going to try to make it to a Jan. 19,2017 bone marrow biopsy. I did not make it that far.

As my week progressed things got worse. I started running high fevers of about 101 deg F. and just feeling crappy. Getting night sweats and my whole body just ached because of the spasms from the cold shakes.

I contacted Dr. Brinker's office on Sunday night and he wanted me to come up to his "Same Day Clinic" (that is it's name) for evaluation by one of his nursing staff. We did first thing Monday. An hour and 30 minute drive for a CBC, a chest xray and to be told that I did not have a temp at the time. The temps were coming and going and I could feel them starting. I just wanted some validation. So much that I even requested to have my temperature taken again before I left. We went home.

The rest of Monday into Tuesday. Fever and chills. Broke into night sweats and I hurt even worse. I called off work and spent the day trying to get comfortable. Dr. Brinker's nurser were calling me and following up on me. I think it was four times that day. I would explain my symptoms and non individually were a trigger. So, we moved on. They suggested my coming back to the Same Day Clinic for another evaluation. I decided to wait.

Tuesday night... worst yet. I hurt so much that now I knew something was seriously wrong. I was not going to make it another night outside the hospital. Nurses called and consulted. Suggested Same Day Clinic again. by 11:00 I have already decided that I need to be a direct admit. I tell them I need a room and they consult Dr. Brinker and he agrees. Direct admit to 5N at Spectrum Butterworth Hospital.

I call Cindy or she calls me. Don't really remember. She asked if I need her to come home. I say. "Come Home". She does and she spends the afternoon packing for the hospital. We both know it is not going to be a short term stay.

We get a small room. One of the ones that they would rather just leave open for the last minute. But not to spend a month in this small of room. Vitals are taken. Blood draws and antibiotics start. An IV for maintaining fluids.

Bone marrow biopsy takes place on Thursday morning and we wait for results. By Friday we have some of the answers that we need. Dr. Brinker comes and tells us that it is Leukemia. That "You would not have be able to wait this out." "It was coming fast and hard. Over 60% of the sample showed Leukemia cells"

He tells us there is more results but he does not need to wait for them to start the process in motion. That means things like heart echo, chest xrays, put in a IJ line to be able to give the chemo. It makes for a busy following 24 hours.

Dr. Brinker did tell us that I would be here at least 4 weeks and made the promise that it would not be in that room(the small one). That I made sure to pass on to the friends I have on staff. As luck would have it someone in a larger room was discharged in the morning. Which meant we could move over to it Friday afternoon after it was cleaned.

A lot started happening all at once. I guess somewhere around 4:00 Jodi comes and tells us the room is ready and we can get our stuff and transfer it over. We pack up, didn't unpack very much, and moved the suitcase, clothes and electronics to the new room and get that situated.

So while all the test are going on most of the time Cindy will stay in the room. Dependent on if we thought it would be long and if they would not let her in the room. It would make no difference where she stayed. But, on two separate occasions I waited for an hour after the procedure before transport came to take me back to the room

Transport shows up to take me to get my IJ put in. Since this is the most intrusive test Cindy wants to go. So she does. Now I had been having trouble with my phone not wanting to keep a charge. I put it on Airplane mode and turned Wi-Fi on and it was charging. I could do nothing with it so we left it in the room. Cindy brought her laptop, that I had JUST bought her for Christmas, and it was sitting on a table charging along with her charger for her phone. Now mind you we have never had a problem with theft here. Well...

We decide not to go into hiding things in drawers etc. and hope it will be OK. We go get the IJ done. Process took about on hour and we did not have to wait for Transport. As we get back to the room Cindy starts noticing things missing. I have played a few pranks and so has Jodi so Cindy Just starts asking question. You guys didn't move anything?? Did you?? Answer: NO. Crap. So we start looking. Someone came into the room while we were gone and took my cell phone and charger. Cindy's cell phone charger and her laptop and charging cord. The same individual felt confident enough to go through every compartment of my backpack and clothing in the closet plus possibly our suitcase. We are thankful that they did not take more. They left my laptop. Which was my lifeline for AML and is again. They did not find my wallet. So thankful for that. But, It is just another mess that I am having to deal with on top of the Cancer treatment.

So, we report to security and they say they will look into it. Still nothing and it has been over a week. I had to purchase a new phone and the deliver of that was delayed. I have a phone now. But, this one will be going back for a different version.

A new chapter?? Maybe.

Those of you that have followed my blog know that I have not taken the time to keep it up. That I published A LOT during my treatment for AML and some as I was getting back to life in a NORMAL fashion.

I, being a creature of habit, like most people. You might wonder why I am writing this post. Well... not for the fun of it that is for sure. Maybe as a warning about being your own Advocate and watching those that are supposed to be looking out for YOUR well being. You should educate yourself on the tests and their meaning. Because there will be times that your health care professionals will not.

As most know I am an AML survivor. In remission for 3 years. Doctors will tell you that you are not truly in remission until you reach the 5 year mark. There is a reason for that statement. There is a high percentage that a cancer will come back. Or that you will have another form of cancer. Some say because of the treatment that you have endured from the first.

I have been fine and healthy for quite awhile, if you don't count problems with my lower back. Which is not the point of this post. My most resent need was to get my iron (Ferritin) to lower. You see I have a high iron count because of all the transfusions that I needed after chemo treatments. I was told it was not a life threatening issue. But if left untreated it would affect my heart and my liver in the long term.  

In an attempt to get my body to lower the iron levels I had to have what is called a phlebotomy. In basic terms they take a pint of blood a month from me and throw it away. So that my bone marrow will produce more blood and lower the iron count. Well, that is the hope. 

I have been through 3 such sessions. It was a pain to get them scheduled and It should have started sooner. But, that is another story in itself. It is a simple process. Like giving blood. Except they use a glass bottle. They stick a needle in a vein and collect 300 cc of my blood. What they do with it after that is a mystery. 

Between my second and third visit I started not to feel well. I think it was Christmas day that I felt a twinge or discomfort. Somewhere that I would rather not say. This twinge, that led to swelling and pain. Is what will eventually be diagnosed as Epididymitis. You can look it up. But, I would suggest you not look for pictures. LOL. It is a bacterial infection of the duct that carries sperm from the testicules.

A couple days later Cindy took me to the Walk in Clinic. That visit then turned into an emergency room visit. I had to get an ultrasound and then a prescription for antibiotics and directed to rest. I am already taking pain medicine for my back. So more was not needed. 

A follow up visit with my family physician a couple days later and there was no real improvement. He ended up adding another antibiotic to take along with the first. He suggested more rest and to keep taking the pain medication. 

So, In between the ER visit and the Doctor visit I already had a Phlebotomy scheduled. I made it to the appointment and the nurse insisted on taking Blood for a CBC. Before the Phlebotomy as we had not had one done in awhile. This would eventually help me connect a pattern that I truly wish I would had never had to find. 

I did tell my family physician that I had had a CBC drawn the previous day. He did not seem to be interested or concerned. So, why should I be concerned? But, I am always curious as to what the results are. I attribute this to being a cancer survivor and know that so much rides on the results of a basic CBC. I always look. But it can take them up to 72 hours to post to my Lakeland Mychart account. So I waited.

In the mean time I am off work, dealing with the discomfort, wondering what is happening to me?

You see the symptoms that I am having are almost exactly the same as what I had in the 8 months prior to being diagnosed with AML in 2013.

I have a lump on my chin that I thought was a pimple, yet it will not pop or come to a head like a normal pimple. This preceded the Epididymitis. I had both these symptoms in 2013. It is what kicked off a miserable downward decline. There is no real cause. No rhyme or reason. I do not have the normal causes that lead to Epididymitis. None. But yet I have it. Out of the blue.

The results of the CBC get posted and I get an email. I check the account and look over the results... And "I" notice something that is off. My WBC are low. Lower that normal. Then my RBC are out of normal range. Hemoglobin HGB is lower than normal range. Platelets are out of normal range. 

Why do I bring this up?? Because their "system" should have flagged these results as being low. It did not. If "I" had not looked then no one would have looked at these results.

I spent days wondering what the low result could mean. I mentioned it to Cindy. She got mad and told me to contact Dr. Patel's office and ask for a nurse to look at the results. I put it off for a bit. Hoping that I would start to feel better and that this was just a fluke.

So, finally I did contact Patel's office. Left a message for a nurse telling them that I had noticed some low results and what, if anything, should be done?

My return call went something like. Nurse: "Are you taking any additional medications? Sometimes medication can bring you WBC down". Me; "Two antibiotics that I had been prescribed." Nurse: "I should  be able to see what they are on your account. Let me check. I put you on hold. Be right back." Me: "OK". Not a minute later. Nurse: "Hi Anthony, Dr. Patel wants you to contact Dr. Brinker's office." Me: "OK. Is there a reason for that??" Nurse: "She just feels that they should address this with you. We will do whatever he wants us to do for you down here. But, you need to contact his office and let them know what is going on." Me: "Ok, can you fax those results to Dr. Brinker's office?" She tells me yes and I hang up.

 Now I am nervous and I call and leave a message for Dr. Brinker and his staff explaining the details. I go to work the next day and as I am leaving work I get a voicemail from Pat, one of Dr. Brinker's nurses. "Anthony, I have discussed your situation with Danielle (Dr. Brinker's physicians assistant) and we would like you to get another CBC. Preferably today... if not tomorrow. Please let  us know when you can get that done. 

Right, I know the people at Patel's office and I also know that I can get one done if I get there before 4:00. I head right there and as they are closing for the day I get a CBC scheduled and drawn. But, the lab is closed and they will send this off to the hospital for processing. Yet again I wait.

I get a call from "Pat" while I a sitting in the chair getting my blood drawn. She informs me that we hope that the first was just a fluke. That if this second test comes in low. Then they will be scheduling a Bone Marrow Biopsy for next week. Not words that I want to hear. Since I was told that I should "NEVER" have to have one again. With the stipulation of course being that I did not show any symptoms that would require one.

Well, time to wrap this up. As my luck would have it. The second test came back low. WBC 2.2. Higher than the first. But still low. I am scheduled for a bone marrow biopsy this coming Thursday, January 19, 2017. I am sure that the test result will take at least a week for all the results to come back. So, WE are now in a waiting game.

I have told my family of the situation. All I can say is that we are scared of the possibilities. I had hoped to make it 5 years and to never hear that my blood test would come back showing something abnormal. But, for now, it looks like that is not meant to be. 

I have had a 3rd CBC and my WBC are a little higher. Still not in the normal range. I have since been experiencing popping in my ear. Another symptom from before. I think we tied that one to low platelets. Headaches. Even with a bunch of medication thrown at it. They still persist. Etc. 

And now we wait. We see if I can make it to Thursday. Seems like it is up to me to decide if I need a CBC and just go make them take one. And we will have to wait to see what they tell us Thursday and the days after. We hope it will turn out to be nothing...But we do not know.

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.