My Acute Myeloid Leukemia Journey.

Last I left you...

noreply@blogger.com (Anonymous) — Sat, 28 Jan 2017 11:52:00 +0000

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.

noreply@blogger.com (Anonymous) — Mon, 16 Jan 2017 11:17:00 +0000

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.

noreply@blogger.com (Anonymous) — Mon, 28 Dec 2015 12:31:00 +0000

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

Life is ever changing.

noreply@blogger.com (Anonymous) — Sun, 08 Feb 2015 13:38:00 +0000

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...

noreply@blogger.com (Anonymous) — Fri, 30 May 2014 14:59:00 +0000

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.

noreply@blogger.com (Anonymous) — Fri, 18 Apr 2014 20:11:00 +0000

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.

noreply@blogger.com (Anonymous) — Thu, 17 Apr 2014 19:10:00 +0000

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.

noreply@blogger.com (Anonymous) — Tue, 15 Apr 2014 12:54:00 +0000

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.

noreply@blogger.com (Anonymous) — Sun, 13 Apr 2014 15:07:00 +0000

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!

3rd round of consolidation chemo done.

noreply@blogger.com (Anonymous) — Sun, 16 Mar 2014 15:39:00 +0000

After a 7 week break from my last chemo my counts were finally back up to normal and we could go ahead and do my 3rd round of consolidation chemo. Ideal would have been 4 weeks but the body can only take so much and being in the hospital an additional 13 days was just not worth it with no immune system and actually a big worry in my mind that it would not recover. No one wanted to talk about that scenario.

But, my counts came back up and without hardly any discussion Dr. Brinker and I were in agreement that we would not pursue this round until I was close to normal. In addition to that he decided to make this round and the following round a little easier on my body hopefully.

These consolidation rounds consist of high dose Cytarabine twice a day on days 1, 3 and 5. To make it easier he decided to reduce that dose by 25% in the hopes that my bone marrow will recover faster after it does what they term Nadir out and I need blood and platelets to stay alive and not sucome to the side affects of the chemo.

Also, because they want to push out any white blood cells from the bone marrow when the immune system is compromised they give shots of Neupogen on a daily basis until I am not what is termed Neutropenic. The problem is that this exposes me to others at the infusion clinic that have colds and flues which I can get and of course my immune system can not fight. So, new plan is to try a shot called Neulasta. I am told that this shot is good for 14 days and does what the Neupogen shot does. A few different possible side affects, but it will have me going to the infusion clinic less often.

Unfortunately I still have to have blood work done three times a week M, W, & F but I will of course mask up and keep that time to a minimum in hopes of avoiding picking up anything that would put me in the hospital.

As with everything there is cost and the cost for the Neulasta is expensive and has to be approved by the insurance company. I just can't fathom the amounts that these things cost and the insurance companies agree to pay. Neupogen at $1300 a shot and the Neulasta I am told could be as much at $9000. It is just hard to fathom. I know that it is cheaper than a hospital stay which can run in the range of $30,000 a week or more.

Thank God for insurance. But, I met my deductible by the 3rd week of January of this year. Which is another struggle to make sure that we don't have to pay more than we should. Which seems to be taking up a lot of my time lately, dealing with Lakeland and the insurance company to get billing and coverage straightened out for hours at a time is not fun and it is still not straightened out.

If it wasn't for all the great people of Coloma, Myers family, friends etc. Who supported us with the benefit I am not sure what we would do. I would still like to personally thank all of those who donated so generously to my family to make this burden easier on us! I can not thank everyone enough... but we will try! If it wasn't for the support of this community I know that our struggle would be much harder and even though there is still stress in dealing with my disease and Karlye's thyroid cancer again I can't say enough how thankful I am for all those that has supported and gave to us, some multiple times and very generously! THANK YOU ALL!

Since my 3rd round of chemo is on board we have to manage my eventual immune system crash and plan for Karlye's next step in her treatment plan. That and I am actually doing work from home with the generosity of my employer. I guess you can say that life still goes on no matter what is thrown at you.

So, update on Karlye is that she will be getting radioactive iodine therapy over spring break. It is a pill that is iodine combined with uranium 131. If I understand the doctor correctly and of course what I research about the treatment myself.

Coordinating the treatment has been a real challenge over the past couple of weeks with me working and going into the hospital myself. There are very specific steps that have to happen so that the radioactive iodine can be administered.

Karlye is currently on a low iodine diet for the next two weeks leading up to the treatment. This is so that when she does take the pill that her body will absorb the iodine into her system. This in conjunction with two shots of a drug called Thyrogen given two consecutive days before she is given the radioactive iodine. The Thyrogen shots and administering the radioactive iodine have to be as close as possible to 24 hours apart from what they tell us. This could have meant three trips to Chicago on three consecutive days or staying in Chicago for those three days to get this accomplished. To try to keep this cost down and not have to either pay for fuel and or lodging we were able to coordinate the Thyrogen shots with Dr. Lai, a local endocrinologist our of Lakeland, who was willing to help support us with this aspect of Karlye's treatment. We also did not want Karlye to miss that much school right before spring break. Trying to keep close to a normal life can be a challenge at times like these.

Dr. Lai has actually offered to do all of this treatment. But, as we have established Dr. Cohen as Karlye's endocrinologist we feel more comfortable with his office in doing that part of her treatment. We feel that he has more experience in dealing with cancer patients that have been through the surgery that Karlye has been through and was highly recommended by Dr. Blair. Although lately dealing with his office and the University of Chicago has presented more challenges than I am liking.

Getting all the information that we need right now for what to prepare for is a real challenge. In doing my research on the diet that she needs to be on and what she/we will have to go through after she is given the radioactive iodine.

Working at a nuclear plant and having some understanding of radiation helps me to understand most of what will happen after she is given the pill. But, it is going to be difficult to coordinate and not a whole lot of fun for Karlye or us in the next six days after she is given the pill. Mainly because she will have to be in isolation and because she will be a source of radiation for 2 to 4 days, still trying to get the specifics on this, we have to keep our distance as well.

Karlye will have to do things like stay at least 3 feet away from her primary care giver and that person can not be near her for more than 10 minutes an hour each day. Other people need to stay at least 6.5 feet away. She will have to bathe three times a day. The list goes on and on. There is more detail here for those that are interested. AFTER RECEIVING RADIOACTIVE IODINE.

All I know is that she will be radioactive for the first few days to the point where we will have to have her isolated and separated from the rest of us, including our dog Sugar. The iodine will be secreted through her skin, going to the bathroom etc. She will need many changes of clothes and those clothes will be contaminated with radiation. We will need to treat those and everything else with special precautions. The problem is that I want us to be prepared BEFORE we go and not try to get everything setup after she has already been given the pill. And that is where the frustration lies with dealing with a doctors office that is a long distance away and is also dealing with other departments to coordinate this treatment.

Anyways. I will be getting the rest of the answers I need in the upcoming weeks and we will get Karlye all prepared to her not so fun spring break.

Emily has been doing well. Working and going to school. Unfortunately for her, her car broke down again on her the Monday night I went into the hospital for my lastest round of chemo. The fuel pump went out so she is borrowing Cindy's vehicle while we coordinate how and where to get her car fixed. I can't say enough on how proud I am of her! She is working and going to school. Doing well in both respects and taking care of herself. Making her own way in life and dealing with all these adult issues. And she is paying her own way. With two people in the family having cancer and the bills that have been piling up we try to help her as much as we can by making sure that she gets her car fixed for the best price possible. But, she is the one that takes the responsibility. I am so proud of her!

So, being a resourceful Dad I found her a fuel pump for half the cost of getting one locally, $150 instead of $300 and we have found someone to replace it for a quoted price of $125. That is $85 cheaper than a dealer wanted for the same repair. Now we just have to get her car to the shop and the mechanic will fit it in over the next couple of days. Thanks to the help of Tim Dibble and to the resourcefulness of Cindy and Emily they were there own mechanics and got the car started to get it home to our house without having to incur a tow bill.

Tim remembered that when a fuel pump goes out sometimes you can get it to work again by taking a rubber mallet and banging on the gas tank, it might only work one or two times, but it worked in this case and Emily and Cindy were able to drive it home. Now Cindy and I will need to get it to the shop. We are hoping that it will start one more time and we can just drive it over. If it will not, then I will probably rent a trailer and tow it over myself. Unless I can get someone to tow it for a reasonable price. By that I mean something close to what I can do it for.

Well I think that is it for now. Another busy week coming up and I just wanted to take a little time and update my blog. I hope all is well with everybody who keeps up with our little world and appreciate all the thoughts and prayers that everyone has been sending our way. We are thankful to all of you!

Next round of Chemo.

noreply@blogger.com (Anonymous) — Fri, 07 Mar 2014 20:44:00 +0000

Hi all!

My counts have been going up all week and are near normal. So, now we get chemo to knock out my immune system again.

Next week I will get chemo. My last weekend of freedom before being in the hospital for 6 days. I guess I better enjoy it!

Congratulations Connor Myers!

noreply@blogger.com (Anonymous) — Sun, 02 Mar 2014 14:08:00 +0000

Congratulations to Connor Myers on his 3rd place finish at MHSAA Div. 2 state wrestling finals. He did a great job!!

Holding off on next round of chemo for now.

noreply@blogger.com (Anonymous) — Fri, 28 Feb 2014 21:51:00 +0000

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.

Wishing Connor Myers success at state.

noreply@blogger.com (Anonymous) — Thu, 27 Feb 2014 15:11:00 +0000

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

Connor in his uniform.

Thank you to the Community of Coloma and friends new and old!

noreply@blogger.com (Anonymous) — Sun, 23 Feb 2014 18:54:00 +0000

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!

Had a visit with Dr. Brinker today

noreply@blogger.com (Anonymous) — Thu, 13 Feb 2014 23:59:00 +0000

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.

So what has happened in January and February?

noreply@blogger.com (Anonymous) — Fri, 07 Feb 2014 15:05:00 +0000

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.

Sorry it has been so long for an update.

noreply@blogger.com (Anonymous) — Fri, 07 Feb 2014 13:22:00 +0000

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.

Karlye update Sunday 12-22-13

noreply@blogger.com (Anonymous) — Sun, 22 Dec 2013 18:38:00 +0000

Karlye has been getting up more overnight and today. She took a long walk out of the room and to the family room which is down the hall a bit. It was a good distance for her.

We saw the doctor that is on call for Dr. Blair and she told us that Karlye is doing well. So, the plan right now is for her to get magnesium over two hours and then she can get disconnected from her IV and the monitors that she is hooked up to. That will make it easier for her to move around and go to the bathroom. She has two tubes in her neck for drainage from her incision. The doctor said as long as there is not much drainage they will come out tomorrow and she can be discharged. We are all looking forward to that happening.

The doctor explained to us that Karlye will be on calcium supplements probably over the next couple weeks and a hormone replacement Synthroid for the rest of her life.

As far as I am concerned Dr. Brinker wanted blood work Monday, Wednesday and Friday. But, because of the holidays Dr. Patel's office scheduled my blood work for Monday and Thursday of next week and the week after. My blood work from Friday showed that my platelet counts are on the decline at 54,000. If they get to 15,000 they will need to give me platelets. My white blood count is dropping as expected and my hemoglobin is staying up for now.

Depending on when Karlye gets discharged and we get back home I will see where I can I get my blood work done. The way that I am feeling now I don't think I will need a blood transfusion. I might need platelets and depending on the blood work they might need to give me platelets so that I can make it through Christmas to my next blood draw.

Today's plan is to get Karlye to walk as many times as possible and do her breathing exercises.

Karlye update.

noreply@blogger.com (Anonymous) — Sat, 21 Dec 2013 16:12:00 +0000

I haven't posted to my blog since before the day of surgery. For those that don't know Karlye had a really long day Thursday. She was in surgery 7 hours. Normal thyroid surgery is approx. 2 hours. There was more disease that what the doctors expected and it took considerably longer. During the surgery, and as a result of where some of the cancerous lymph nodes were, she had a collapsed left lung. The had thought this would seal itself. But, x-rays in recovery revealed it was worse and they had to put in a chest tube.

We had left Michigan at 6:30 a.m. that day and we did not get Karlye to her room until 1:30 in the morning. A long day for all of us to say the least.

Dr. Blair stopped by last night and gave us more information on the surgery. She told us that there was more disease than they expected. More than they had seen on the CT scans. Besides the lymph nodes on the right side of Karlye's neck there were some behind her collar bone down in her chest. There was also one behind her trachea and one in front. She did tell us that she took out all that she suspected to be cancerous. But, she did leave it open to there might be more and it is always possible that more surgery may be needed in the future. But, we are hoping that is not the case.

The past two days Karlye has been resting but sore from the chest tube. Actually more than her surgery site. She seems to complain more about the IV spot in her hand and the chest tube. We are hoping that the chest tube will come out today so that she can move around more without the pain.

As far as Cindy and I go we have been staying with Karlye as much as possible. Actually Cindy has not left her side and I just left long enough to get my blood work done and change clothes at the Ronald McDonald House. We decided to both sleep in the room with her so that we are here. Besides, I really didn't feel like being alone over at the Ronald McDonald House. Although it is a very nice place with nice rooms.

Today we are hoping to get the chest tube out and get Karlye to take a walk or two. We know she is not in a condition to come home today and probably not even tomorrow. We will just have to wait and see.

Karlye's surgery is tomorrow.

noreply@blogger.com (Anonymous) — Wed, 18 Dec 2013 22:54:00 +0000

It has been a busy day and a lot going on in the last 24 hours. Karlye's surgery is tomorrow in Chicago. At first we were told that it would be at 2:00 and then not 30 minutes later we get a call back telling us that Dr. Blair saw the schedule and wanted Karlye moved to be the first patient of the day. She said it is going to be a long involved surgery and she wants to do it first. She wants to take whatever time is necessary for Karlye. She told me at out last appointment that she would take care of her like she was her own daughter. I told her that I would hold her to that! So, we have to be at the University of Chicago Medical Center to check in for pre-op by 8:30 and surgery is scheduled for 9:30. We will need to be leaving early in the morning and I hope that we do not hit any traffic getting in to the south side of Chicago.

Today I spent most of the morning getting my blood work done and taking care of some last minute things for Christmas and Emily's birthday. Dr. Patel thinks I should be ok until Monday and hopefully not need any blood products while we are in Chicago. My counts are falling and I will be susceptible to infection so she advised me to wear a mask while I am in Chicago. I will be getting blood work done on Friday to see where my counts are at and I am hoping I will have no issues.

Please keep Karlye in your thoughts and prayers tomorrow and pray that God will guide Dr. Blair's hands during the surgery and remove all the cancer. Also, to keep Karlye safe and the surgery and recovery goes as easily as it can! Thanks!

Brinker morning visit.

noreply@blogger.com (Anonymous) — Fri, 13 Dec 2013 16:05:00 +0000

Dr. Brinker news this morning. After he asked how I was feeling and how things are going of which I answered that so far I have only had a headache in response to treatment. Nothing that Tylenol cannot take care of, he did say that was more than likely caused from the anti-nausea medicine. He did tell me that he doesn't expect me to feel too bad from the treatment this week. But, that he expects me to feel fatigued next week and my counts to drop to the point that I will need blood products. That is why he wants blood work done Monday, Wednesday and Friday. With Karlye's surgery next Thursday I had to make arrangements with Karlye's doctor to get the blood work done at the University of Chicago. But, unless I hear otherwise today it looks like that will not be a problem. Only problem will be if I need blood or platelets. Then I will have to decide if I want to pay $100 out of pocket to have it done in the ER or come all the way back to St. Joe and get it done there. We will have to play it by ear.

We discussed what to expect following my release from the hospital. Besides what I already mentioned he did say that he didn't want me doing things like cleaning out the attic, picking up after the dog, being around people that are sick and being in big crowds like movie theaters or stores during the big rush times. Especially when I my counts are low.

He explained that my counts will drop and will then start to come back up like before. When they are back up he will then decide to put me back in the hospital and do the next round of consolidation chemo. I did ask him about when my next bone marrow biopsy would be and good news is unless something in my blood work indicates otherwise, my next bone marrow biopsy will not be until we are done sometime in April. Then checks ups every 3 months and another bone marrow biopsy in a year.

He had told me before that my consolidation chemo treatments will be about every twenty-eight days. So mid-January probably sometime around the 13th I will expect to be back in the hospital for another six days.

He did find out that I wasn't taking the lovenox and stressed that he wanted me to take it over the next three days because of the blot clots that they have been seeing in people with PIC lines. So I will be getting those maintenance shots once a day.

So, I just need to make it over the weekend and probably next week with no issues and should be good. Yeah!

Back in the hospital.

noreply@blogger.com (Anonymous) — Thu, 12 Dec 2013 20:31:00 +0000

Well, I am back in the hospital for what they call consolidation chemo. I know I posted on Facebook that Dr. Brinker said I was in remission. Truth is that they don't really consider you in remission from leukemia until you have made it five years after treatment without getting the leukemia back. So, first stage is Induction and second is four rounds of consolidation.

Plan is for me to be in here for six days. I am in here a little early so I can be there for Karlye's surgery on the 19th. Dr. Brinker somewhat threw me a twist this morning when we were discussion the follow up treatments after this round of chemo. The chemo knocks out your immune system and there will be blood transfusions and platelet infusions. He told me that I would need blood work done Monday, Wednesday and Friday. When I reminded him about Karlye's surgery on the 19th, which is a Thursday, I told him that I would be in Chicago on Friday. He got a little crappy with me when I asked if there was a way for me to get my blood drawn while I was in Chicago. He tells me that. "I guess if you are bleeding you can go to the emergency room and then they will do a blood test and you can explain your situation." Told me that he or doctor Patel did not have privileges at University of Chicago and it would be to hard to co-ordinate one blood transfusion there. I just want a blood test done. It takes forever to get a blood transfusion setup and done anyways. I will figure it out myself.

Karlye's CT scan the other day solidified the plan for surgery. Not much changed except a clearer view of the lymph nodes behind the collar bone and a possible one on her left side. None were seen in her chest so that was good news. Dr. Blair said she would remove anything she feels is suspicious.

So far I have been through my first round of chemo. Today is my day off and then another round tomorrow. I had a headache this morning and still have a dull headache but it is manageable. Stomach does feel a little weird but I am still eating ok.

Dr. Brinker informed me that this is high dose chemo and some of the side affects of the high dose is that it can affect my liver and kidneys. It can also affect my balance so I need to be on the look out for that. It can make my eyes dry and red. But, he has given me drops to help prevent that. It could make me nauseous, more because of the higher dose, because I have had this drug before. There are medicines that they can give me for any side affects. I just hope no other side affects come up.

He did say I would go home Monday if I was feeling well. Of course then I am wondering why I would not be feeling well? That comment along with my PA Neska making comments about me staying well and out of the ICU kind of makes me think but, fingers crossed. I told her that I would be out Monday. No time for me to be in here any longer anyways.

Karlye's appointment with Dr. Blair and some Good news.

noreply@blogger.com (Anonymous) — Sat, 07 Dec 2013 01:40:00 +0000

We went to Karlye's appointment with Dr. Blair and she did confirm the diagnoses of thyroid cancer. She went over the CT scans that had been done at Lakeland Hospital and showed us the masses in Karlye's neck. There are more than what we had been told. She has also ordered a head, neck and chest CT to be done next Tuesday. She was very nice and very optimistic. She even took the time to show us how they would determine the stage of Karlye's cancer and because of her age it basically doesn't go higher than stage 2. She told us that she needed surgery to remove the thyroid and the affected lymph nodes. The reason she needs the CT scan of the chest is to see if it has spread into Karlye's lungs. She did not seem too concerned and told us that with surgery and eventual follow up with radioactive iodine that the prognoses was good. She told us that this is highly curable. The surgery has been scheduled for December 19th. If we do not do it that day we will not be able to get her in until after the first of the year. So, we will make this happen.

Good news! I did get a call from Dr. Brinker on our way back from Chicago. He said that I am in remission! He told me that the pathologist looked high and low for ANY leukemia cells and could not find any. He did state that i had a protein on my white blood cells that is usually a marker for the existence of leukemia cells. But, then stated that it might just be that I have that protein on my normal white blood cells anyways. He stated that the test for the protein only showed 0.02% and again restated that he is calling me to be in remission. I asked him if we could move up my next round of chemo so that I could be out of the hospital for Karlye's surgery. He was OK with that. So, it looks like I will be going in the hospital on Wednesday, December 11 in hopes of getting out on Monday the 16th. Although this does mean I will be spending my birthday in the hospital. (Someone is going to owe me. LOL.) I am glad that we can move this up so that I can be there when Karlye has her surgery. Although we are not sure where we will stay because Karlye will be in the hospital for 2 or 3 days. We will figure all this out in the next week I am sure.

Biopsy done waiting on results

noreply@blogger.com (Anonymous) — Thu, 05 Dec 2013 12:53:00 +0000

Finally home from my appointment. Good news is that I do not have to give myself anymore shots of blood thinner AND I do not have to get more blood work done for now. Maybe not so good is that Dr. Brinker had us schedule for me to be back in the hospital on December 16th for my first round of follow up chemo. That is sooner than what I had expected. But, he explained that if I am in remission now, which he will not know for sure until he gets the results of today's biopsy, he wants to keep me there and do follow up chemo sooner than later.

Now to see what Dr. Blair has to say on Friday in regards to Karlye's thyroid cancer treatment. I want to be there if they decide surgery is the best treatment.

Dr. Brinker did tell us that he did not feel that there was anyone in Grand Rapids that he would recommend to treat Karlye. He said. "You need a good surgeon and unfortunately that is one thing we don't have here in Grand Rapids." If it was my wife or child I would look into University of Chicago and U of M. Those places that specialize in thyroid cancer treatment.

At least now I feel a little better about going to the University of Chicago in Friday. But we do have other recommendations from friends and one being Ohio state University. So, if for some reason we do not like Dr. Blair we have another option.