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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.