Second Appointment with Brinker and supposedly Hospital day

Monday October 7, 2013

Yet another day that I am up around 6:30.  For some reason the desire to sleep in is just not there and I must still be on my outage schedule.  Cindy is up early because it's a school day and she is taking Karlye to school at 7:00.  I get up and get my coffee and sit down in the living room with her laptop.  More research and more questions to get answers to or find out if anything gives me questions that I want to ask Dr. Brinker during our appointment.  I don't have the luxury of sitting around on the computer for too long so I don't.  I get in the shower and get ready to leave.  I then start checking the suitcase that Cindy packed yesterday and make sure that I have what I think I will need during my hospital stay.  Of course this includes all the electronic stuff.  The laptop, iPad, Kindle and my phone along with all the chargers for everything.  Little did I know that there wasn't going to be a lot of time to get bored in the hospital.

We leave around 9:30 and I want donuts.  So, we stop by Wesco and Cindy gets a drink.  I actually remember seeing Courtney Meyers in there.  We say Hi. How you doing?  Like it is a normal day.  I know that neither one of us has time for me to go into any detail about being told I have Acute Leukemia recently.  Besides we will be late for out appointment as it is if we don't get moving.

I don't remember all the details of what we talked about on the way up to Grand Rapids.

When we get to Brinkers office we have to wait a little while.  I can tell that Cindy is nervous and we are seeing a lot of cancer patients.  More that we had seen on Friday.  They call me back to draw blood for a CBC.  It is like an assembly line.  One after another they are drawing blood from people and I remember telling Cindy just that "It is like an assembly line for people with cancer."  My heart gets heavy because I realize that there are a lot of people suffering and dealing with cancer.  Way more than I could have ever realized.

I can't remember what time we finally get called back but I would guess we had to wait at least 15 min past our appointment time.  We go back and they do the basic weight, temperature and blood pressure and take us to a room to wait for Dr. Brinker.  It is not too long before he comes in.

He had stated on the phone.  "There is a possibility that the biopsy will come back negative even now.  I would have egg on my face.  But, you wouldn't have AML and that would be good for you."  So, one of the first things he says is that the diagnoses has been confirmed and I have AML.  Not a surprise.  He did say that he was still waiting on results from the test and that he wanted a pathologist to put the diagnoses in writing before he started to treat me with chemo.

I remembered that one of the suggestions that I read online was to tape record the conversations with your doctor.  Just so you can remember or go back to what they say.  They put out so much information and it is hard to remember it all even when you have someone with you.  For some reason I don't ask and I wish I would have.  But, here is the basics of what I remember from the conversation.

He tells me that he doesn't have any clinical trails available for me to participate in and that his course of action is a standard 7 + 3 chemo.  He tells me I will be in the hospital a minimum of 4 weeks and I could be in the hospital 6 to 8 weeks depending on how I respond to the chemo.  He adds that "every time I have to give you a round of chemo it resets the clock and it is another 4 weeks from that point."

The chemo drugs.

The chemo drugs used most often to treat AML are cytarabine (cytosine arabinoside or ara-C) and the anthracycline drugs (such as daunorubicin/daunomycin, idarubicin, and mitoxantrone).

He decides that I will get Cytarabine in continuous IV for 7 days and Daunorubicin in what they call "pushes" one time a day for the first 3 days.  I will detail the interesting facts about these drugs later.

He tells me that after admission I will have to have a Muga scan which is a nuclear medicine test of the heart. To see how healthy my heart is to begin with and there will be one done when I am done with the chemo. He explains that Daunorubicin is a real nasty drug and it can affect the muscle tissues in the heart.  Great.  The treatment is just as bad as the illness.  You can read more about the test itself here.

http://en.wikipedia.org/wiki/Radionuclide_angiography

He also tells me that within 24 hours I will have a PIC line installed in my arm.  This will allow them to give me the chemo and take blood etc. easier than poking me with needles all the time.  He explains that they make an incision on my right arm and run a catheter in my vein to just above my heart.  That it will have two ports on it so that they can give me chemo and take blood samples and give me other drugs through the other port.  Funny thing is that when he said catheter I was thinking he was going to do a urinary catheter and I really wasn't wanting anything to do with that.  So, that was one of my questions.  He said.  As long as I was able to walk and be independent there would be no need for a urinary catheter.  Boy that was a relief.  

He details the possible scenarios.  Seven days of chemo, seven days off and then a bone marrow biopsy.  If the bone marrow biopsy comes back and shows no myeloblast (immature white blood cells that normally reside in the bone marrow.  But, have migrated to the blood stream... Leukemia) then no more chemo and the process of getting my counts up to leave the hospital begins.  If the biopsy shows that the Leukemia has been reduced but not totally gone.  We might wait a week and let the chemo work some more and then do another biopsy.  If the biopsy shows a little reduction in the myeloblast then another round of chemo and another 4 weeks.  If there is an increase then he says. "I have picked the wrong chemo drugs and we have to start all over."  This whole process is called "Induction" it basically kills the leukemia and resets the bone marrow but it is not called being in remission.  

So, after all this and the not knowing how my body will react to the chemo and not knowing how long I will be in the hospital he starts to detail what happens in the next phase of treatment.

He tells me after the "induction" then we start the process of making sure we put the leukemia into remission or what is called "post-remission treatment".  He tells me that this can go in one or two directions.  The first would be after getting out of the hospital from the induction treatment.  I would wait 3 weeks and then go back into the hospital for 5 days and undergo intensive chemo treatments.  High doses of Cytarabine twice a day for 3 of the days.  One day on and one day off and repeat for the five days.  Then home and wait another 3 weeks and do the process all over again.  This would happen 4 times over 4 months.  So, what are the draw backs.  Every time they give you chemo then you have the possible side affects that are too numerous to list and it knocks your bone marrow down to nothing.  Like a hard reset.  Which also means that there will be CBC (Complete Blood Count blood work), blood transfusion and platelets.  Now I am wondering how I am going to be feeling during this process.

The second scenario is that I go through two rounds of post treatment chemo and then have a bone marrow transplant. He really doesn't explain the transplant process.  But, he then tells me that I will be off work for 6 months and if I need a bone marrow transplant I could be off 9 months to a year.  This is not good for our financial situation which I will detail later.

So, he gets done with all this information and ask me if I have any questions.  With so many what ifs I don't really know what to ask.  So, he says most people want to know how long they have to live.  So, he says.  "I don't know the answer.  What I do know is that if you don't get treatment you have 4 to 6 months to live. That most people that decide not to do chemo keep getting blood transfusions until at some point they just stop showing up for the blood transfusion and decide to die."  Nice.  Just what I wanted to hear.  Funny thing is that I never considered not getting treatment.  For one I am to ornery to give up that easily and besides that my wife and kids wouldn't let me make that decision.

He tells us that he want me to be admitted to the hospital.  But, if I needed a day or two I could take it.  He did not recommend me waiting past Wednesday to be admitted to the hospital.  This is different than what he told us Friday and over the weekend.  He adds that sometimes there isn't a bed available right away and we would have to deal with the admission process through his schedulers.  He didn't deal with that stuff.  But, he also tells us that it is not necessary for us to wait until six or seven tonight for a room.  That we can come back tomorrow for admission.  We are done so he points us in the direction of the schedulers and we proceed to that area for help.

On of the phone calls I make over the weekend is to my insurance company.  I explain my situation and that I have been diagnosed with AML and that my doctor is recommending hospitalization.  The representative on the phone says.  "Make sure that they get pre-authorization before they admit you."  If they don't then you could be financially responsible for the whole stay.

We are given so much information and my head is just kind of spinning from it all.  I tell Cindy.  "Man I wish I would have ask him to record that conversation.  I don't know why I didn't.  I should have and I am not going to make that mistake again."  

So, we sit down with a scheduler and tell her that Dr. Brinker is recommending hospitalization and chemo. She calls bed management at Butterworth and they tell her there are no rooms available.  That they are waiting on patients to be discharged and that probably will not happen to around 5 or 6 and there are two other people ahead of me on the list.  I tell the scheduler that I am not waiting around for a what if, that I can wait until tomorrow to be admitted.  Bed management tells us that it would be better if I waited and that I would be the first one on the list for tomorrow.  That I would get a call between 8 and 9 on Tuesday with a room number and a time that it would be available.  I was alright with that.  I would get an extra nights sleep in my own bed and an opportunity to get some more things done before I go into the hospital.

I then tell the scheduler that my insurance company has stressed to me that I make sure that this office gets a pre-authorization before I am admitted to the hospital.  This is new to her and so we spend about 15 minutes waiting on her to make phone calls and find out when the pre-authorization was going to be done.  She finds out that is part of the admission process and it will be taken care of before I am admitted.  This is a load off my chest as I am starting to worry about the financial consequences of my illness and how this is going to affect my family.

We leave the office and we are hungry so we eat at a cafe on the third floor where Dr. Brinker's office is located.  We talk.  I remember that even with both of us there, there were parts of the conversation that we couldn't remember and how mad I was that I didn't ask him to record the conversation.  After lunch we head home and I start checking on stuff like making sure that my beneficiaries on my life insurance policies are correct and up to date.  That the beneficiaries on my 401K is setup correctly.   Going over bills and the bank account information with Cindy.  At least I have the rest of today and at least the morning tomorrow to take care of last minute things.

Getting ready to go into the hospital.

Sunday October 6, 2013

Again I woke up around 6:30 a.m.  Although I am resting a little better there is way to much on my mind to sleep in.  I have so much I need to do and only today and tomorrow morning to do them in.  Today was the day that we had to get things ready for me to go into the hospital tomorrow.  I was trying to go over what needed to be done in my mind.  As I was up before anyone else I did start my morning with a cup of coffee and again on the computer doing research on what ever question I had on my mind at the time.  Most of the questions were about the hospital, which I would be held captive in for at least 4 weeks, and my illness.  So until Cindy got up and moving that was what I did.

When she got up we just sat around and talked for a little while before she decided to make breakfast.

At one point I decided to work on my server and setup a blog.  I had decided that when I found out about my illness that I wanted to write about the experience and detail what I went through just to find out what was wrong with me.  If nothing else it would be something for me and/or my family to look back on in case the worst were to happen.  My thoughts were to also add notes and things about life that I wanted my daughters to know.  I haven't done much of that yet... but I will.

After that is was look at the bills and pay what I could.  Detail to Cindy how I keep track of everything and show her how to get to our accounts and give her the passwords.  Not something that you think about on a day to day basis.

I also wanted to make sure that I could get to information if questions came up that Cindy needed help with of I couldn't remember.  So, I made sure that my systems were setup for remote adminstration in hopes that I would be able to remote in from my hospital room and update files etc.  That has actually worked rather well from up here.

Emily had said Saturday that her and Zane would come over after she got off work today.  So, in the afternoon they showed up and we hung out talking and watching a little TV.  She didn't seem to want to leave and I am glad that she wanted to spend time with me.  But, at 9:00 I was tired and I told them I was going to bed.  Which I did.  She ended up coming into my room and laying on the bed talking to be for a little while.  She told me she loved me and I told her I loved her.  She has grown into such a wonderful young woman and I am so proud of her.  It is too bad for her that she has my stubborness.  LOL.  But, I know that she will do fine and she will succeed at anything she puts her mind to.

Not a bad day but tomorrow wasn't going to be a whole lot of fun.  We had an 11:15 appointment with Dr. Brinker in Grand Rapids to go over the results of the biopsy and to discuss what the treatment plan was going to be.

Saturday and the next phone call.

Saturday, Ocotober 5, 2013

I think it was yesterday that I had texted all the girls and told them that I wanted to spend time with all of them this weekend.  Dr. Brinker told me I would be going into the hospital Monday and this would be our last opportunity for awhile.  Emily works on Sunday so that probably was not going to be the best time.  Luckily for me they all could make it this afternoon.  Tara, Steve and the boys said they would be down early afternoon.  Emily and Zane said they be there in the afternoon.  But, they had been given free tickets to the Niles haunted house from Zane's mom and they had plans to meet around seven.  It didn't matter.  I just wanted to spend some time with all of them together.

I woke up early.  Around 6:30 and made coffee.  I am still on outage hours I guess.  Plus I really had so many things to do I wanted to get stuff done.  After reading all the information that I had at the hospital and listening to Dr. Brinker spew like an encyclopedia for about 30 minutes.  I still knew that I didn't know enough about the disease that I was facing.  So I spent the morning researching the disease and getting tips about different questions to ask etc.  Even though the government was shut down thank goodness they didn't shut down all their web sites.  Althought there was a disclaimer that the website was not being updated because of the shutdown.

http://www.cancer.gov/cancertopics/pdq/treatment/adultAML/Patient/page1

Has a ton of information.  It even has PDF documents that you can print and take with you to your doctors appointments.  It had some useful information that I would not have thought about.  Like recording your appointments with your doctor so that you can remember what he told you.  There is so much information that a doctor gives even in a 5 minute conversation that I know I can't remember it all.  Plus the medical terms etc.
Another thing I learned that I wasn't even thinking about at the time.  (PG-13  alert! do not read if under 13) I learned that chemo can be transferred from the person getting it to their sex partner and that chemo can cause serious birth defects.  It was recommended that men wear condoms when getting chemo treatments and for some time after.  Now I know you would think that if a person is that sick... but you never now.  Another suggestion was that patients write down questions for their doctors so that they make sure they remember what they want to ask them when they are available.  All good suggestions that while dealing with the life or death situation of the disease you might not think about.

I had found out that he would admit me to Spectrum Health Butterworth Hospital so I went to their website and got answers to all the questions that visitors and family would have.  Address, directions, where to park, visiting hours etc.  It has a very detailed website and the information was informative. It was nice to know that Cindy could spent the night with me in my room.  We also fount out that there is Renucci House that is connected to the hospital.  Families and friends of patients can stay there at a cost of $35 a night.  What is nice about this is that they have a common area with 3 kitchens and dining room, a family room, and a kids playroom.  You can bring your own food and use their kitchens to cook a family meal where if the patient is mobile enough they can join everyone over at Renucci for dinner and families can spend time together out of the cramped hospital rooms.  On weekends sometimes a church group will cook dinner for anyone that wants it and it is free.  They also have a minimal pantry with some basic food.  So people can have a bowl of cereal, eggs or even a sandwich. Or they can make spaghetti for a meal.  All for free or donate what you can afford.  Illnesses are expensive and it is nice to know that there are organizations out there that are giving to the families.  Making opportunity for them to spend quality time together.  Because for some these are the last days of their lives.

Anyways research and probably bouncing from one thing to another most of the morning and then getting ready for the kids to show up in the afternoon.  I was looking forward to seeing the kids and the grand kids.  I knew that the times that I would get to see them in the coming months were going to be few and far between.

Tara, Steve and the boys showed up early afternoon and we did what most families do.  We just spent time together.  We talked and just hung out.  I got to play with and hold my grandsons.  To show my children love and to let then know that I loved them very much.  I also got to reassure them that we would make it through this and that I didn't want them to worry about me.  They know I am stubborn.  It is going to take a lot more than Leukemia to take me out.  LOL.

That is not to say there wasn't a tough moment during the day.  Around 3:00 that day I think.  Dr. Brinker did call.  He told me that the pathologist did confirm my diagnoses of Acute Myeloid Leukemia and the plan was still for me to go into the hospital on Monday.  Again he says.  "Bring your toothbrush."

It just so happened that when I was done with the phone conversation I was hungry and we all started discussing where and what we wanted to eat.  Take out was on the menu.  I didn't want Cindy cooking.  I took the opportunity to pause our food conversation and I just said.  "Now is as good a time as any to let you all know.  That was Dr. Brinker on the phone and the test results came back.  They confirm that I do have Leukemia and I will more than likely be going into the hospital on Monday.  I also want you all to know that I love you very much!  Each one of you!  And we will all make it through this."  To be honest my voice cracked a couple of times during that conversation.  I finished it up with. "And that's enough about that!  Let's figure out what we want for dinner and lets eat!"

It was a good afternoon.  Emily and Zane stayed a little later than they should of but it was nice and Tara, Steve and the boys stayed till around 9:00.  A little later than I expected but it was nice also.

Not too long after they left we went to bed.  Everyday is a long day when you have stuff you want to accomplish before going into the hospital.

Too much to do... so little time.

October 4, 2013

On our way home Cindy and I try to talk about what things need to be taken care of over the weekend.  Since Dr. Brinker already told us that I will be in the hospital for 4 weeks minimum and I am trying to think long term.  Just in case something bad was to happen to me during all this.  Because I take care of all the bills I have a lot of information to give to Cindy.  How to get to all the accounts, passwords, etc.  When I pay certain bills.

I tell her that I need to double check that all the beneficiary information on all my life insurance policies is accurate and up to date.  We don't have the luxury to ignore the possibility that I might die because of this disease.  I also tell her I need to contact the insurance company and see what all this is going to cost us out of pocket.  Off the top of my head I already know it will cost $3000.00 or more this year alone.

Then there are all those phone calls that you have to make to let people know what is going on.  As long as the girls received the news from us that was what was most important to me.  But then there are brothers and sisters, other relatives, friends, bosses, etc.  It seemed like every time we turned around we remembered someone else we needed to call.  After a certain point I just decided I would post on Facebook what was going on.  I just wanted to let people know.

Those first phone calls are the hardest.  It is so difficult to get the words out without crying or having that crack in your voice when you tell someone you have been diagnosed with Acute Leukemia.  I remember we let Karlye stay home from school that Friday and on the drive up to Grand Rapids I called the school to let them know she would be absent.  I also felt it was important to tell the secretaries and school councilor that I had just been diagnosed with Acute Leukemia and we needed their help to make sure that Karlye is doing o.k.  We also emailed all of her teachers and ask them to keep an eye on her for us and to make sure that she is able to focus on her school work.  You see I think it would have been pretty easy for Karlye to close herself off.  There just happened to be a choir get together that Friday night and we requested permission for Karlye to attend even though she wasn't at school because of the circumstances and Mr. Ehlers granted permission and Mrs. Selvidge was just fantastic with helping her that night.  I am so glad that she has such good people in her life.

I talked to Cindy and told her that since I was probably going into the hospital Monday that I would like to have all the kids over for the afternoon either Saturday of Sunday.  Saturday ended up being the better time because of schedules and such.

I make sure to balance the bank accounts and pay the bills we can pay.  I give Cindy all the info that she will need just in case I can't take care of things for some reason.  Since most everything is online either one of us should be able to take care of what we need to.

Since we didn't get much sleep the night before we go to bed early and get ready for another day.

Meeting Dr. Brinker.

October 4, 2013

We drive to Grand Rapids down 196.  It is pretty much a straight shot all the way to GR.  Then exit 78 College Ave to Michigan Ave.  We have some basic directions that the new patient person gave me over the phone on how to get to the office.  It ends up being suffice to get us there.  We actually end up getting there about 15 minutes early to my surprise.

As I sit here and write this now it is hard to remember what we talked about on  the drive up.  Cindy probably remembers more than I do.  I know we talked about Emily and the girls and how they were taking the news.  I know that we told each other that everything was going to be o.k.

I thought about all the information that had been thrust upon me in the last 24 hours and all the possible scenarios that had been presented so far on how the treatment would proceed.  I also figured I was in for a bone marrow biopsy and really wasn't looking forward to that after how many times I had been stuck with needles in the past 24 hours.

We get to the office and check in.  Of course they need all our insurance information and consent forms signed, etc.  Then we sit in the waiting room to waiting to be called back.  We didn't wait long and we were in a room waiting for Dr. Brinker to come in.  When he came in the room I could tell that he was a professional and he just had a way about him that showed confidence.  He begins by telling us that he had been in discussions with Dr. Patel and that they felt I might have Acute Myeloid Leukemia.  But, he also stated that we will not know for sure until we do a bone marrow biopsy and get the results back.

He goes into detail about how we will treat the Leukemia.  He repeats most of what I read the night before, the information that nurse Jennifer gave me, on how they put you in the hospital for 4 to 8 weeks.  First week is a 7 + 3 Chemo.  7 days continuous with one drug and daily pushes with another drug the first 3 days.  Then wait 7 days and do a bone marrow biopsy and see if the chemo has killed all the Leukemia cells.  Time frame and everything else depends on the biopsy at day 14.  Good results and I am out in 4 weeks.  If there are still Leukemia cells after 14 days but much less then we might wait a week and do another bone marrow biopsy.  If there is more than when we started.  Then another round of chemo and the 4 week clock starts over.  That would also mean he didn't choose the correct drugs the first time.

Anyways he goes into great detail about the process and that is reassuring.  He says.  "You are young and we are going to beat this.  I will fight for you."  He does a physical exam and tells us that he has to do a bone marrow biopsy today.  That he needs to know for sure what we are dealing with and that is the only way to know for sure.  He asks if we have any questions.  I say not really.  He says.  "Well most people want to know how long they have to live?  But, that is not a question that we will talk about now.  We need the results of the bone marrow biopsy to tell us what sub form of leukemia you have and then we can talk possible outcomes."  I tell him that I might want to be sedated for the biopsy.  He tells me it only takes 10 minutes and he will talk me through it every step of the way.  (I only asked for a sedative because nurse Jennifer suggested it.  She says it can be quite a surprise with the size of needle that they use.)  I tell him.  "Since you are telling me you are that good.  I will give you one chance to prove it, but only one." And with that we were off to another room for the bone marrow biopsy.

This room happens to be bigger and it has an adjustable table off to one side.  So, he gets a couple nurses to assist him and Cindy sits down in a chair across the room.  He directs me to lay down on my side with my face facing the wall and away from him.  The wall has four pictures on it.  Labeled peace, comfort and I am not sure what the others said.  What was more interesting about the pictures was they had glass frames and everything was just at the right level so that I could see what he was doing to me.  He would tell me and if I wanted I watch him, which was most of the time, I watched.  He numbed the site with Lidocaine and just had to wait a little bit before he started.  Let me tell you even in a reflection that needle was big!  It was like 6 to 8 inches long and had a handle on it.  like a T handle.  Come to find out this was so once he pushed it in and contacted bone he would twist it back and forth to drill into the bone.  All I felt was pressure.  He did says.  "You have some really thick bones."  It did take him two tries to get a biopsy and one time he put the needle in I felt it and he had to numb me some more.  He also said.  "Your body doesn't want to give up the bone marrow."  It must have been taking longer that he anticipated.  But, we got through that part.

 He tells us that we need to make another appointment for Monday.  He says.  "If I get the results back over the weekend I will give you a call.  Otherwise we will have result by Monday for sure."  He tells us.  "When you come back Monday make sure to bring your toothbrush."  Because once the diagnoses is confirmed we need to start treatment right away.  He also told us that once he know exactly what kind of Leukemia it was he would have more details for us on a treatment plan.  We leave his office and head home.

Treatments begin!

October 2, 2010

So, headed to the hospital and both Cindy and I are stunned.  I see a Berrien County cop pull up beside us on Napier and I say.  "If we got pulled over right now and a cop ask me how we were doing I would say.  Well, I just got diagnosed with Leukemia.  How is your day going?"  Sounded funny to me at the time.  We get to Lakeland and we are not sure where to park.  All I know is that I need to go to the pediatric unit and I was told that it was on the other side of the hospital.  But, just to ask someone at information and they would direct me.  We get to Lakeland around 5:30 p.m.  We park in the parking garage and of course I want to walk into the hospital.  I am really tired and Cindy is walking a little fast for me.  Of course she wants to get there.  I pull on her arm and tell her to slow down.  It is taking a lot to make the walk.  

We get inside the front entrance and no information person.  We see someone in a Lakeland uniform and ask them where the pediatric unit is and they give us directions.  We get up there and tell them my name and that they should be expecting us.  The nurses find us an empty room and get us situated.  They are very nice.  We tell them that Dr. Patel's office has arrange for me to get a blood transfusion and they seem to know that I was coming.  One of the nurses asks if I had blood drawn and I tell her earlier today.  She then ask if I know if they did a type and cross match.  Heck at first I am not really sure what a type and cross match is, then I start to remember some of the stuff that I have been reading and probably some high school biology stuff that everybody forgets over time.  I tell her I don't know.  She tells us she will go check and make some phone calls and asks if we need anything.  We ask for some water and sit down and start waiting.  

Well it is hard to remember now how long we waited.  But, it was awhile, probably about an hour.  At some point one of the nurses, I think her name was Jennifer, came in and asked if we were hungry.  She tells us that it will be awhile and gives us a menu.  Says you can order anything you guys want as long as we order before 7:00 p.m. when they close.  Just call that number and tell them you are a clinic patient and they will deliver it to the room.  Well, we had not eaten all afternoon so we ordered some food.  I had a cheese burger and it was pretty good.  So during this time they ask if I have ever had a blood transfusion?  I tell them no.  So , they start giving us information about possible side effects and all the bad stuff that can happen when you get a blood transfusion.  Oh, and of course having to sign all the consent forms for the treatment.  But, the kicker is in how long this is all going to take.  First they come back and tell us that I have to have blood drawn for the type and cross match.  That it takes awhile.  Sometimes up to two hours to get the results depending on how busy the lab is and that once they start giving blood it takes around 3 hours a pint and I am getting two pints.  We start to realize that we are in for a long haul.  

This whole time Cindy and I are talking about the girls and what needs to be done to tell them what is going on.  You see Karlye was the only one that knew what was going on and before we told anyone else we wanted to make sure that Emily and Tara heard it from us first.  After placing our food order I decided to call Tara and let her know what was going on.  This was around 6:40 and to tell you the truth it is hard to remember now writing this what all we talked about.  I know I asked how her and the kids were doing.  But, I pretty much just cut to the chase and told her what was going on.  I told her about the diagnoses, the blood transfusion and the pending appointment with Brinker in the morning.  We both managed to make it to the I love you when we said goodbye before our voice started to crack and we hung up the phone.

Cindy and I had been talking about how we were going to let Emily know.  You see she was at college and we sure didn't want to call her and have her miss class or make her so upset that she could not drive home.  So, as we talked about it we decided since it was going to be late, like three in the morning before we would get done, that Cindy would go home and check on Karlye and meet Emily at her apartment to tell her what was going on.  Since Emily didn't get out of class till around 9:00 we had a little time.

We had received our food and ate before the lab tech came to draw my blood.  I think it was around 7:30 when he showed up.  He told us that it usually only takes an hour to get the type and cross match.  So, we start waiting.  We already know that when they can't start giving me blood until this is done and that will be when the 6 hour window starts.  After that I tell Cindy to go and check on Karlye and tell Emily what is going on.  Cindy leaves and I get to read all the info about the blood transfusion and watch TV for awhile.

My nurse Jennifer, and I wish I knew her last name, was so kind and thoughtful.  She asked how I found out about having Acute Leukemia and what I was told by my doctors.  You see she tells me that she use to be an Oncology nurse and that she can get detailed information for me to read from the hospital system about what I have been diagnosed with, how it is treated and the course of treatment.  She does ask if I want the information.  She tells me that some people just don't want to know and some people want to know it all.  I tell her that I am the type of person that I want the information.  I like to know what I am dealing with and have as much detail as possible.  It helps me cope.  

Well it seems like Cindy is gone for awhile and it is getting later and later.  Still not hearing anything about the type and cross match.  8:30 goes by, and then 9:00.   Sometime after 9:00 Jennifer comes back by and ask if I have heard anything yet.  I tell her no but Chris the guy that did the blood draw said it would only take about an hour.  So, it should be done by now.  She says she will check and let me know.  By now I am wondering what is happening with Emily and how she might be taking the news.  I call Cindy and find out she is still waiting for Emily to come home.  

By now it is getting closer to 10 and my nurse Jennifer comes back in. She tells me she needs to start an IV because I need to get some meds 30 minutes before I start getting the blood transfusion   FYI. They give Tylenol and Benedryl to help control fever and allergic reactions to the blood.  Then also have to monitor your vitals and be present for the first 15 minutes in case there is a reaction.  Vitals consist of blood pressure, oxygen % and temperature.  If you spike a temp they stop. They also take vitals at specific time intervals after that and all during the blood transfusion.

Bless Jennifer's heart she tries to get an IV started.  She tries twice with no luck.  Because I am so Anemic it is difficult to get the IV started.  Also, since it is blood it has to be a bigger needle than usual.  Lucky me.  She tells me the other older nurse Genie can get an IV started in a baby and goes to get her to give it a try.  Well, Genie has to try twice also.  But, on the second time she does get it started.  By now I am starting to feel like a pin cushion.  I had been stuck with a needle so many times lately.  Six times just today so far.  Not so much fun for me.

So, IV gets started and meds start flowing.  Still waiting for type and cross match.  I think it was after 10 when they finally started giving blood.  Jennifer talked to me during those first 15 minutes and I told her how I found out.  She was surprised that I was told over the phone.  But, I told her I was O.K. with how it was done.  She knew what I was in for already being an Oncology nurse.  She got me the information and discussed some things with me about what would happen with the blood transfusion and the days ahead.  She was great.  She was kind and she cared.  I of course kept trying to get them to get the blood transfusion over with.  Asking if they could go faster.  No deal.  After awhile she finally convinced me that it probably be around 3 in the morning before we were done.  Just great when we needed to be in Grand Rapids at 8:00 a.m.  

I am not sure when Cindy finally got back to the hospital.  Maybe around 11:00 p.m.  I asked her how things went with Emily.  She said she had gone over to her friend Taylor's to study after class and that she didn't want to come home to talk to her.  She took her time I guess.  But, when she finally got to the apartment Cindy did tell her what was going on.  She said she cried and seemed stunned by the news.  But, that she wanted to see me so that after she got a shower Zane and her would be up to visit.  

It must have been around midnight when they got there and we just really sat around and talked.  We got on the subject of food and they seemed hungry.  I happen to like the Philly cheese steak sandwiches that they make in the hospital cafe.  Long story for another time on how that came about.   So Zane and Emily take off to the cafe to get something to eat and Cindy and I wait for them to come back.  They come back with food for all of us.  Although it took awhile.  Zane and I have Philly cheese steak sandwiches and Cindy and Em have some tuna stuffed tomato things.

We eat and sit around just hanging out for awhile.  We don't talk much about what is going on and it is nice to have a break from all the drama of the moment.  As it gets later it just seems like Emily doesn't want to leave.  But, knowing that we have to be there and she has to work we end up kicking them out to go home and get some sleep.

I know it was after midnight and it might have been closer to 1:00 a.m.  I am on my second pint of blood and the nurses had told me earlier to just take the opportunity to sleep while the blood was being transfused.  I think Cindy and I got about 2 hours sleep.  We get done with the transfusion and it is almost 3:30 in the morning.  We get home about 4:00 and I tell Cindy that we will just lie down for about an hour and get up to get ready to go to Grand Rapids.  Not much more sleep.  Just like a cat nap really.  We are back up around 5:30 getting showers and getting ready to head to Grand Rapids.  We are on the road around 6:30 and it is an 1 hour and 20 minute drive to Grand Rapids.  They would like us to be there 15 to 30 minutes early to fill out paperwork.  It doesn't look like we are going to make that.

Testing blog feed.

This is a test.

How did I find out I have Acute Leukemia (AML) Part 2.

So, this is about the 48 hours leading up to the time that I found out and what happened so rapidly thereafter.

On Wednesday October 2, 2013 I was still struggling but I was trying to work.  It felt like it was going to be a good day.  Heck I got a close packing spot.  Fourth spot from the stairs.  I was relieved that I would not have to walk as far.  Walking in I still had the muscle aching and by now I was compensating for taking the stairs by taking the elevator.  So, it wasn't as bad.  As I might have said.  Things in the beginning of an outage start out slow.  We had a job to go in and test the Nuclear Evacuation Horns in containment that day.  We had to wait until we hit Mode 5.  That took until around 2:30.  We prepped the job and discussed what rolls each of us was going to play.  I decided that I would lead the team going into containment.  Heck it was just checking horns in two locations.  I was just listening for the alarm.  There should not be anything hard about doing that.  Me and my partner went into containment about 3 that day.  All I did was climb three 12 ft ladders and had to climb 4 flights of stairs to check the second location.  By the time I climbed those four flights of stairs I was winded and my heart was racing.  It took a long time for me to be able to talk over the PA to verify that the horn was working.  We then exited containment.  It was only about an hour and an half of work.  But, by the time I got back to the shop I was spent.  I sat there for an hour.  My head started to hurt and I was a little shaky.  I then changed from my modesty's back into my street close to leave for the day.  It was all I could do to get out to my truck at the end of that shift.  I had to just walk about a 1/4 mile and one flight of stairs to get there.  By the time I got to my truck I was winded and my heart was racing.  This time I thought I was going to have a heart attack or a stroke.  Lucky for me I didn't have either.  I drove home and I explained everything to Cindy.  I told her.  "I am done."

I didn't want to spend the night in the hospital.  So, I told her that I would call off work on Thursday and I would either get into see Mayle or go to the emergency room.  Part of the reason that I held out from going to the emergency room is that we have a $100 co-pay if you go to the emergency room.  We just didn't have the money for that and by this time I really didn't think they would figure out what was going on with me.  So morning comes and I get up and get a shower.  Cindy calls Dr. Mayle's service and tells them either he get me in or I am going to the emergency room.  They scheduled me an appointment for 9:15.  The outpatient lab was open at 8:00 so we had just enough time to get the blood work drawn before the appointment with Mayle.  We get to the appointment and the nurse runs an EKG to check my heart right there in the office.  When Dr. Mayle comes in he had looked at the EKG.  He tells me that the good news is that he didn't see anything wrong with my heart.  He then proceeds to tell me that he thinks that I am Anemic.  Finally something that I can start to make sense of.  He goes on to tell us that there are many causes for being Anemic like low iron or insufficient B12.   But, that he didn't want to speculate.  He would wait for the test results and give us a call.  Probably not until about 5:00.  He told me not to go to work that day.  Just to go home and rest and that is what I did.

Since Cindy didn't want to use to much sick/vacation time she ended up going to work while I stayed home and rested.  I was just laying around watching TV when around 3:35 I noticed that I had a voice mail from Dr. Mayle.  I had left my phone on vibrate and the call went right to voice mail.  So, I listen to the voice mail and it goes like this.

"Anthony this is Dr. Mayle.  I need you to contact me right away.  Call my service and have them patch you right through to me.  They will be expecting your call.  Also you may be hearing from another doctor that I have been talking to."

Well, I not ashamed to say that I start to wonder what could be going on.  Doctors don't usually want you to call them right away if it is good news.  I am thinking how serious could being Anemic be?  And my thoughts of just having to add an iron supplement or change my diet just went out the window.  I had done some research on being Anemic after the appointment and had been preparing myself for the possible results.

I call him back.  Get passed right through to him.  One of the first things he ask is if I had talked to the Oncologist.  I tell him no and I am thinking to myself.  What the hell how does being Anemic go to having to talk to a cancer doctor?  He proceeds to tell me that I am Anemic.  Very Anemic.  That my hemoglobin was 5.6 and normal is between 14.0 and 18.0.  and my white blood cell count is high.  I can't hear him say the number because my cell phone is cutting in and out and I just can't hear parts of it.  I know it is high and not good.  He then goes on to tell me that he has been conferring with a Dr. Patel an Oncologist out of Lakeland St. Joe.  He ask if I want to hear the rest over the phone or come to his office.  I tell him I will take the news over the phone.  He then proceeds to tell me that they both think that I have Acute Leukemia.  That Dr. Patel will be calling me in a few minutes and she is in the process of setting up a blood transfusion at Lakeland hospital St. Joe.  He tells me that Acute means fast, as that it has come on rapidly.  That it has to be treated quickly.  And a bunch of other stuff that I can't remember right now.  I hang up the phone.

I call Cindy at work and tell her to get home.  I tell her I just got off the phone with Dr. Mayle and about the voice mail that he told me I have Leukemia and on Oncologist will be calling me in just a couple minutes.  I say.  "Just to get home and I would fill her in when she get here."

I am not ashamed to say that after I got off the phone with Dr. Mayle that I lost it.  I was crying and thinking oh my God how is it that I now have cancer?  I am panicked.  But, now I am waiting for the next phone call and for Cindy to get home.

3:48 I get a phone call.  It is Dr. Patel from Lakeland St. Joe.  She asks if I talked to Dr. Mayle and I tell her I have.  She proceeds to tell me that they feel I have Acute Leukemia.  That I need a blood transfusion right away and that I will be getting another call from a Dr. Brinker's office.  She explains that she doesn't think they are well enough equipped to deal with this kind of cancer at Lakeland.  That my choices are to be treated in Grand Rapids or Ann Arbor and since Grand Rapids is closer she recommended I get treatment here.  She tells me that they have referred other up here with good results.  That she had spoken with Dr. Brinker about my blood work and he had agreed to take me on as a new patient.  That he would see me first thing Friday morning.  I was his first patient at 8:00 am and I had to be in Grand Rapids at that time.  I agree and she begins to detail the information about the blood transfusion.  She tells me that it will all be setup for me to go to the pediatric unit at Lakeland and get the blood transfusion.  That I needed to be there as soon as possible.  She did however neglect to tell me how long it would actually take.

No sooner am I off the phone with her and at 4:41 a new patient person is calling from Dr. Brinker's office to confirm the appointment for Friday and of course get my insurance information.

Cindy if off picking up Karlye from yearbook at school during part of this time.  So I am waiting for them to get home and sitting at the kitchen table stunned.

The girls show up a little while later and when they come in I can tell that Cindy hasn't said anything to Karlye.  So, I ask her how her day was and she tells me.  She ask me how I am feeling and I tell her to sit down.  I proceed to tell her what had been going on this afternoon and of course we all cry.  But, I tell her we are going to get through this and I love her.

We get Karlye situated and ask her if she wants to go to the hospital with us because I have to get a blood tranfusion.  She decides that she has homework and to stay home.  I tell her I think it should only take a couple of hours... maybe four.  But, we will be back as soon as possible.  Cindy and I head to the hospital.

How did I find out I have Acute Leukemia (AML) Part 1.

June 2013

Well, I am not really sure when things changed from being sick with one thing and started turning into Leukemia.  For me things started happening around the middle of June 2013.  At that time I was diagnosed with a condition called Epididymitis.  It is a bacterial infection of the tubes of the testicle and causes pain and swelling.  It came on all of the sudden and unexpected.  So, of course with my luck I could not get into see my regular doctor, Dr. Mayle, so I ended up going to the walk-in clinic in Watervliet.  There they diagnosed it and began heavy doses of an antibiotic called Batrium.  I was getting a shot a day and taking a pill also.  So, by the fourth day they asked if it seemed like things were getting better.  They weren't, so they did an ultrasound on my testicle to see what was going on.  It basically turned out that the Batrium wasn't doing the job so they changed me to Cipro by mouth for 10 days.  At about day 7 it still didn't feel like things were getting better.  So, I made an appointment with Dr. Mayle and he called me in a prescription for 5 more days worth of Cipro.  As we were going on a camping trip that would have to suffice for then.  So we went camping and I went back to work, I was working all along, and I dealt with it.  Some of the swelling went down, but, it just didn't seem to be getting better.

July 2013

We went camping around the 4th of July.  As you can see things had stretched out for awhile.

August 2013

On August 15, 2013 I made another appointment with Dr. Mayle.  At that time my right testicle was still swollen so he put me on a penicillin based antibiotic for 10 days and told me that if this didn't clear it up that I would have to see a Urologist.   I also had been having a popping in my right ear and I thought I had an ear infection.  He looked at it and said it was probably allergy related and to try to use an over the counter allergy medicine and that the popping could be my Eustachian tube and should go away on its own.  At that time I had told him that "I really haven't felt well since the last time I saw you".  But, I was sent on my merry way.  So, after this round of antibiotic I did start to feel better, for just a bit, Then I started feeling tired and run down again.  Which is all how I had been feeling all along.

September 2013

So after this last round of antibiotics it is now into September.  I am starting to feel tired again but I am managing.  I start taking naps after work because I am not sleeping well.  I had started grinding my teeth in the last year.   Not sure if it is stress related or not.  But I did crack a tooth and caused some sensitivity in a couple of others.  I purchased a mouth guard and started using it at night.  Anyways it is September and the outage is coming at the end of the month and I am wanting to make time for one last camping trip before then.  Oh yeah at some point in time during all this we moved Karlye out of her room  for a couple weeks to paint it and add new trim.  I was tired more than usual so that is part of the reason that it took so long.  But, I sucked it up and we worked together and got it done.  She really seems to like it and that is all that matters.

After this I just started to get weaker and weaker.  Since I detailed much of it in a email that I sent to Dr. Mayle on September 29, 2013.  I will just post that here.

Dr. Mayle,

I am writing you in advance of my next appointment in an attempt to detail my medical problems that I have been experiencing over the last couple of months. In the event that you need to send me for some tests or you might want to recommend sending me to a specialist.

To begin I have not felt well since before my visit to your office on August 15, 2013. At that time you prescribed Amox TR-K CLV 875-125 MG Tab twice daily for 10 days. This was for Epididymitis that I had been dealing with since June 18, 2013. This appeared to help with the Epididymitis and for a few days after finishing the medication I was feeling a little better. Then I started feeling worse.

Symptoms:

• My right ear has had a pressure and popping since before my visit in August.
• Hearing my heartbeat in my right ear.
• Dry cough.
• Lack of energy.
• Muscle aches and pains.
• Neck stiffness.
• Weakness in my muscles.
• Occasional dizziness. Usually after kneeling or bending over.
• Any small amount of physical activity and my muscle start to ache.
• I get winded climbing a couple flights of stairs. My heart starts racing and I am breathing heavy.
• I have had a recurrence of canker sores. Several over the past couple months.
• Unexpected boil like pimples that appear in approximately the same places on my face.
• I have had what feels like constant sinus pressure and headache.
• Leg cramps in my calves and shins late at night after a long shift at work.
• Numbness and tingling in my arms while sleeping.

Since our visit in August my weakness and energy levels have been going down considerably. I have never gotten winded by climbing a couple flights of stairs. Now just the 1/4 mile walk into work has my muscle aching and by the time I climb the stairs to get to my shop I am breathing heavy and my heart is racing as if I had just ran a couple of miles.

I have been trying to rest and hope that my energy levels would start coming back. But, this has not seemed to help.

Things have seemed to be getting worse over the past couple of weeks which I can chronicle some situations that have happened.

My family and I went camping the weekend of September 20th and during that time there was many times that I would have to sit and catch my breath. For example I could not move a bundle of wood without getting winded. If I exerted myself in the least little bit I would have to stop and rest until my breathing and heart rate slowed down enough to resume whatever I was trying to accomplish.

After that weekend and because I couldn't get in to see you I made an appointment with Dr. Stockton. I thought maybe how I was feeling could still be related to the Epididymitis. I saw him on the 24th and he ordered some test and could not tell me what could be causing my symptoms but that he felt the Epididymitis was gone.

On September 26, 2013 I worked a ten and a half hour shift at work which consisted of basically no breaks and mostly standing and sitting on concrete floors. When I was done it was all I could do to walk the 1/4 mile to my car to go home. That was the night that I experienced the leg cramps at around 11 or 11:30. I have not experienced leg cramps like this since I was a teenager and had been doing two a days in football for two weeks. It was like the day just took everything out of me.

Last July we decided as a family to change our diet and start following the Ornish diet. We decided to be vegetarians and until the last couple of months I was mostly meat free with the exception of an egg for breakfast to provide protein. But, because of the lack of energy I thought maybe I wasn’t getting enough protein so I decided to add meat back into my diet. It really hasn’t helped with my energy levels.

Over the past year I have started grinding my teeth at night when I sleep and have done so to the point that I ended up cracking a tooth. This happened to be a lower molar and was confirmed by my dentist. I have also since then done something to one of my upper molars that was extremely sensitive but has begun to heal since I have started using a mouth guard at night when I sleep. I am not sure if this is stress related? I do know that I didn’t use to grind my teeth at night. Along with this it seems as if I am getting up ever hour and a half to two hours to use the restroom at night. I haven’t been getting a full 8 hours sleep in a long time and surely not even a straight 4 hours without waking up.

I know that I have a high tolerance for pain and I have not had issues like this in the past. As this has been going on for awhile now and nothing is getting better. If anything things are getting a little worse everyday. I am really looking for some help and insight into what could be causing all of this. It feels like my body is all out of sorts and it is not just one thing but the combination of them that has me feeling like this. I appreciate your help and recommendations.

Sincerely,
Anthony Krueger

So, as you can see I know something is wrong and I am not sure what it is.  I am starting to get desperate.  In the email there wasn't a lot of detail about the visit to Dr. Stockton.  So, I will detail that here.

So when I went to see Dr. Stockton on the 24th.  I made arraignments to be off work and thought I would be back to work that same day.  I explained to doctor Stockton everything that was going on and his approach was to run test for STD's, HIV and a chest X-ray.  He did tell me that it didn't look like I still had the Epididymitis.  But did agree that "I didn't look good."  and said.  "Sometimes we never find out what these things are.  They sometimes just go away on their own."  Not very promising and I know that he wasn't going to find anything in all his blood test.  I thought maybe the chest X-ray.  I took the rest of the day off so as not to miss too much work and got all his ordered test done that day.  But, within a week all the test results were coming back negative.  I could see the results via Lakeland's MyChart web access.  I made a follow up appointment for October 11th which was the soonest I could get back in to see him.  Because Stockton advised me to follow up with Dr. Mayle and because all his test were coming back negative I scheduled an appointment with Dr. Mayle and the soonest I could get in to see him was the 10th.

I kept working and resting as much as possible.  The response that I received from doctor Mayle was to order a blood test and a chest X-ray.  I sent him an email back to tell him that I already had a chest X-ray and to ask if he had access to the results?  I didn't want to pay for another chest x-ray since one was already done.  He let me know that one was suffice and just to get the blood work done.  I contacted Dr. Mayle by email because I didn't want to wait until the 10th and then have to wait 2 to 5 days for the results of any test to come back.  I also thought if he felt the symptoms that I listed was sever enough he would tell me to come in or go to the emergency room.  All he did was suggest to get the blood work done before the appointment on the 10th.

We started the outage on the 30th.  I sat down on Sunday the 29th and wrote the email to Dr. Mayle.  It took a couple hours to remember and detail everything.  I was just hoping for some relief.

I went to work Monday and was trying to make it til Friday which was my first day off of the outage.  That was when I had planned to get the blood work taken care of.  But, since the outage starts out slow they were taking volunteers to go home after 9 hours and as I wasn't feeling very well I decided to take advantage of that and thought I would get the blood work done on Monday.  So, I made it to get the blood work done before they closed and the girl at the desk ask if I had fasted for 12 hours.  Of course I say no because I didn't know I had too.  She says.  "Well they are checking lipids so you need to fast for 12 hours."  I tell her I guess we will have to do it another day and leave.  There was no way that I was going to fast all night and work all day to get that test done.  It would have to wait until Friday my day off.  Well, I didn't make it that long.