Not sure how to put this.

We had decided to wait until after Thanksgiving to disclose this news.  As some already know my youngest daughter Kalye had a biopsy of one of the lumps in her neck on Tuesday.  It was surgery and she had a difficult time after because of the anesthesia.  We got her home and she got through that part and although she is sore she is doing well.

My wife Cindy received a call from Dr. Bovenkirk that they needed to see us Wednesday and to have the office fit us in whenever we could get there.  The roads were horrible and we got stuck on the highway because of traffic.  But, we finally made it there around 2:00 p.m.  

As some would suspect when a doctor calls you unexpectedly and wants to see you it is not good news.  Long story short.  The pathologist had determined that the lymph node that was removed, which was so inflamed, was determined to be caused by a cancerous thyroid.  To put it another way they told us that she has thyroid cancer.  

Dr. Bovenkirk detailed that the course of treatment was to remove the thyroid gland and the remaining swollen lymph nodes in the neck.  He also informed us that they found some swollen lymph nodes in her chest during a CT scan a few weeks back and they may need to be removed as well.  We will need to discuss this with a specialist to determine the final course of treatment.

So, we need to decide where Karlye is going to go for treatment.  We have three recommendation. The University of Chicago, U of M or a doctor out of Indianapolis.  We will be looking into them and make a decision early next week.  

I have to say that this is not anything we expected to hear and we are trying to stay positive.   We love you Karlye!

Please keep Karlye in your thoughts and prayers as we work through this very trying time.

Some thoughts from the past few days of being at home.

It has been five days since I posted.  I guess on this Monday I am wanting to write about my stay in the hospital.  One thing that has been bothering me a little is after spending 42 days in the hospital and thinking that I had made some connections and friends with the people that took care of me is I haven't heard a word from any of them.  I take that back.  I received a customer satisfaction call from Kelsey, I think,  that was as dry and impersonal as any of those calls could be.  How was your stay with us?  Could we do anything to improve? Etc.

I am not sure what to think about that.  I had several of them say that they would keep in touch.  I gave them my contact information and even wrote a thank you note for the whole floor thanking them for their compassion and what I thought was friendship.  Not that I would have done anything differently.  But, now I wonder if I did something that offended anyone or is it just that was their job.  Or I was their job at the time and once you are gone you are gone from their thoughts?

I could tell with a couple of the nurses that they purposely kept their distance.  Everything was purely business and about the care.  I didn't expect much from them.  But, there were a few that I thought we had at least become acquaintances, if not friends.  I would have to say that I am a little disappointed.  They didn't have to tell me that they would stay in touch.  They didn't have to say anything they didn't mean.  I would have been the same person no matter how they reacted.  I can't tell you how many times that I was told that they all liked me by the floor manager Nikki.  I guess it just goes to show you that no matter how you are some people can just not be genuine and to me that is a shame.

I guess to those who might be reading my blog I would say that I was genuine and if to do your jobs you need to have that separation then I guess I understand.  But, I would suggest that you don't tell your patients anything that you really don't mean.

So, now I have been home six days and I am still working on getting my strength back up.  I am taking my medication on schedule.  Nine in the morning and nine at night.  I am not sure if I will ever get use to giving myself shots.  Hopefully it will only be for two weeks like Dr. Brinker had told me in the hospital.  Right now my job is taking my medication and getting my blood work done two days a week.  I will know more later today, but, I do think that my counts are up close to normal.  I am hoping they are getting close.

It is a long way from being connected to a PIC line and an IV pump.  I am still waiting for all the scars to heal.  The blood clot is going down which is a good thing.  I look back at my time in the hospital and I think about all the blood products that I needed during my stay, the blood transfusions and the platelets, these are what has kept me alive.  I had no idea how many blood products a person with blood cancer needs.  In my case so far as best as I can count.  I had sixteen pints of blood.  That is sixteen people that I thank for giving me the gift of life.  You know I never thought that all those times that I gave blood of it being like that.  I always thought my blood was going to someone that had been in an accident.  Until now I had no idea the amount of blood that is needed for people with blood cancers such as AML.  That doesn't include the platelets that I needed during my stay.  I know that I had eight packs of platelets outside of the ICU and even though it is a little fuzzy I think I remember them giving me five packs of platelets and if that is correct there is an additional thirteen people that I owe my life to so far.   A total of twenty-nine people so far that have given the gift of life and I am not done yet.  I have now idea how many more blood transfusions and platelets that I will need after each round of additional chemo that I am going to be going through.  I guess I state this to put it into perspective for me and for those who give blood or think of giving blood.  You are doing a great service.  By taking that hour out of your life to give blood you are actually saving a life.  We should give it greater importance than what we give it.  Because these people are heroes in my mind and I wish I could thank each on of them personally.  So enough about that.

It is my hope that it will be after Christmas when Dr. Brinker wants to continue the post induction chemo. But, we won't know until the biopsy on December 4th.  That is the key right now. Although I do have hope.  Dr. Patel mentioned when I saw her that when she had spoken to Dr. Brinker he was rather hopeful about my recovery.  So lets hope that they both are correct and the rest of this chemo therapy goes better than the first two rounds as far as having something happen when my immune system is down.  For now I need to stay healthy and that is what I intend on doing.

What a difference a few days make.

Well it is November 20, 2013 a Wednesday.  The last time I posted to my blog was last Friday. Things changed so much over four days.  Over the weekend my counts started recovering and almost doubling on a daily basis.  So much so that Dr. Brinker's PA was telling me I would be home by the end of the week.  Well that turned into that I could go home Monday and then to I got to come home Tuesday.  What a whirlwind of a few days.  In a week I went from being in the ICU to being discharged and at home all by myself.  I guess that is the crazy thing.  I spent 42 days in the hospital with people checking on me every hour and sometimes so many people stopping in to check my condition that it almost drove me nuts.  To go from that to being alone all day and taking care of myself is going to take a little to get use to.

Well I am not alone.  Sugar is taking care of me.  But, it is funny how I have had no interruptions today and I was able to make appointments and phone calls without someone walking in and needing to take a vital or something.  But, it is weird to have to give myself my own medications and now I have to give myself shots of Lovenox twice a day because of the DVT (blood cot) that I received  from my PIC line when my platelets increased the last time.  I can tell my platelets are coming back up because the clot is swelling a little and hurting on top of that.  It is a good thing I am on blood thinners.

I still have to do blood test twice a week and that is going to be coordinated through Dr. Patel's office at Lakeland Oncology center in St. Joseph.  I have a appointment tomorrow already.  My next bone marrow biopsy is already scheduled for December 4, 2013.  Dr. Brinker decided my counts are coming back so fast he wanted to do one in two weeks instead of 3 to 4 like he had originally thought.

So, besides being home not much is going on.  I have time to start dealing with the financial situation that this disease has put us in.  We have already received our first bill from Spectrum Health for part of my hospital stay.  Let's just say my portion is in the 4 digits and that is not a good thing and I know that is just the first bill and not the final bill.

I do want to again thank everyone that has donated money, sent gas cards or just kept me in their thoughts and prayers.  I know that without you I would not be home before Thanksgiving.  A big Thank You goes out to all of you!  I hope that you have a special Thanksgiving with your families as I will be able to have with mine.

Biopsy result and prognoses.

Dr. Brinker called last night and visited me this morning to explain the results of the latest bone marrow biopsy.  And here is the basics of that conversation.

He said that the leukemia is gone.  But, he made an exception and said that there are finer test now that can detect minute levels of leukemia cells and that came back showing some.  What that some is he didn't say and it really doesn't matter.  There will be no more chemo for me during this stay in the hospital.  The plan is to get my counts up and get me healthy again and then to do a bone marrow biopsy in 3 or 4 weeks and see what the results are and go from there.

Unfortunately he doesn't feel that I will be home before Thanksgiving like I had hoped.  I think being in the ICU was more of a setback than either of us wanted.

So the plan is to get my white blood cells, hemoglobin and platelets back up so that I can fight infection.  This will take awhile because my immune system is bottomed out right now.  Get me home and then back for a repeat bone marrow biopsy.

After that I will be going through 4 more rounds of chemo with just a 6 day stay in the hospital each time.  About every 28 days after I leave the hospital this time.

So now it is a wait and see game and hope that nothing else happens during the rest of my stay here.  Like one new development is they found a resistant strain of bacteria in my blood culture called "Amp C" which now means that the nurses have to wear special gowns when they come in my room so they don't spread it to other patients.  It is not uncommon for patients to develop this. But I was hoping I wouldn't find out anything new.

The stay in the ICU took a lot out of me.  I have a lot of swelling because of all the fluids they pumped into me to get my blood pressure up.  My blood pressure got as low as 60/20 and maybe lower I can't remember.  Now my blood pressure is high.  At times 155/100 so they are giving me medication to get rid of the fluid.  But, that is turning out to be a slow process.  I suspect they will be putting me on medication for that soon.

My appetite is not what it was before the ICU and my breathing has to be worked on daily because all the fluids reduced my lung capacity.  But, that is improving each day.  My strength is improving daily.

I have to admit that being in the ICU scared me and I am so glad that Cindy was here with me during this time.  She was able to take the week off work and help me recoup and has been my rock during this rough time.  I am hoping my strength is back up to the point it needs to be by Sunday because she will need to go back to work next week.

We both wish she could stay with me longer.  But our finances will not allow it.  I just hope nothing else happens that will require any longer of a stay in the hospital.  Like I said before.  It is not necessarily the chemo that gets you.  It is one of the many possible side effects that will jump up and bite you in the rear when you least expect it.

A new direction.

Last time I posted I was talking about the events of October 8, 2013.  I am now on day 37 of being in the hospital.  There have been some up and some downs and some fun in between.  I wanted to change the tone of my blog to let readers know more about how I was thinking than to just write in chronological order this whole experience.  Although there are important dates that I will bring up from time to time.  I want people to understand my thought process and why I have decided to "Be Positive" as I can about my AML and some decisions early on that I made for me and no one else.  Because that is what it has meant to me.  Most will understand, some may not.  But those that don't can keep it to themselves.  Since this is a blog without much interaction.  None at all on blogger.com.  I get some replies on Facebook.  I figure it is more of a soapbox that I hope people will like to read.

So, that's the change.  To write what is on my mind at the time and what I feel is relevant.  I will take some of my post from Facebook and put them here because not all the access my blog have access to my Facebook and there have been some funny stories that I have posted there.  

It was within the first week that I made a few decision that I needed to tell Cindy about.  I remember we had the conversation alone.  But I basically told her that this was my illness and my life.  That live of die I was going to do things the way I wanted.  I wasn't going to worry what any one thought and that included her.  That if I was going to fight this it had to be my fight.  That nothing was going to happen that I didn't want to happen.  It was all my decision.  

With that I had thought back on my life and what I had regretted most and those were the times that I didn't recognize accomplishment or beauty right there in the present.  To show appreciation now instead of thinking... I should of told them they did a good job or I should have told her how pretty she was.  What a nice smile,  How smart you are. Doesn't matter.  But, I have decided that my response to beauty and greatness was going to be immediate.  That I wasn't going to regret not saying what needed to be said when I needed to say it.

I also decided that the people taking care of me during my illness are also people and that I would get to know them on a personal level.  I would ask how their days were going?  If they had to work tomorrow or if they had time off coming up and what they might have planned for it and honestly feel happy for them.  You see I could tell right off the bat this was a rough job for all of them.  That most people that end up here might not necessarily make it home.  And that I was going to do more than wallow in my illness.  Matter of fact I didn't want this to be about my illness and I have made it a point to try not be about my illness.

I have made friends here.  Hopefully life long friends.  Doug, Jodi, Sarah, Melissa, Darci, Jill, Tanya, Ashley, Becky, Danielle, Sarah, Lauren, Danny, Jessica, Gretta, Nikki, Grace, Stephanie, Nancy, Kyle etc. Just to name a few.  I openly hug and show affection for these people and they have even come and visited me in the ICU when I was there.  That means a lot!

Well, this is just a start.  Because of being in the ICU from November 10 through the 12.  I have been trying to get my strength back and my vision and my mind to where it once was.  You will be surprised what a staff infection will do to a body.  Besides almost killing you it really messes up your mind and coordination and it even has been hard for me to see up until now.  But, things are getting better.  I'll update more soon.

Later 

Hospital Day 2 (First full day)

Wednesday October 9, 2013

Well it was an interesting night.  After not getting to sleep until after 12:30 a.m. and then finding out that the nurses come in and check on you every hour during the night.  It wasn't a good nights sleep.  Now is the day that I get to start learning the routine of being in the hospital.  The night shift nurse comes in at around 6:30 to check and make sure you don't need anything.  Shift turn over is at 7:00 a.m.  So, I find out that they do a shift exchange in the room with the patient some time between 7 and 7:30.  So, much for sleeping in.

There is not much to tell this morning.  New admit with a diagnoses of AML, had a Muga scan last night and is scheduled for a PIC line at 10:00 a.m.

I also find out that there are daily blood draws to measure my CBC levels.  So, at around 8:00 a.m. here comes a technician from the lab to poke me with a needle and get some blood.  I am sure not liking needles at this point because it takes her twice to stick me.  But, she does finally get the blood drawn.

I was impressed with how proficient they were in doing my PIC line.  It was like an assembly line they did it so effortlessly.  I had waited 20 minutes in recovery to get into the room where they do basically on operation to install the PIC line.  What amazed me is it seemed like it only took 10 minutes to install the PIC line.  They put you on this big live x-ray machine and the PIC line has to go into the vein that is running through your right bicep.  This is because` the catheter of the PIC line runs down that vein to just above your heart.  The one they are installing in me is a two line PIC.  Two lines so one can be used to give continuous chemo and the other for antibiotics, saline and to do blood draws.

They drape and dress and get the location sterile.  The doctor comes in and uses the ultra sound machine to find the vein and after they deaden the incision site they cut into the arm and start inserting this catheter.  I could feel it a little while they were fishing it up my vein towards my heart. This was a little freaky.  But there was not pain.  After that they actually attach the Y port that connect to the catheter to you arm with a couple of stitches.  They do not want this thing coming out and me bleeding to death and that is a good thing.  There is a sterile dressing specifically made for the PIC that is clear in the middle so that the nurses and doctors can check it to make sure that there is no infections going on over the next 4 to 8 weeks that this is supposed to be installed in my arm.  And that is it.  They are done and I am back into recovery.

I wait another 20 minutes for a nurse from Oncology to escort me back to my room and that was it.  Easy peasy.  I would come to like the PIC line.  It is so much nicer than getting poked with a needle every time you turn around.  It was so difficult for the nurses to start an IV because of the anemia and it was taking them multiple times to get one started.  Now most everything is through the PIC.  It makes it easier for them and for me.  The major deals with a PIC is the worry of infection.  If there were to be any infection then they will have to pull the PIC line and go to IV's in my arms that can only be in for 4 days at a time and then they have to be removed and another put in a different spot.

Let's see, the next things to happen today are a blood transfusion and chemo.  Well since I am back from the PIC line installation around 11:00 lunch is really the next thing on the agenda.

They want to get my hemoglobin levels up before they start giving me my chemo.  This will take 3 hours a pint.  This is my second blood transfusion and it goes much smoother than the first.  They give me pre-meds of Tylenol and Bendadryl to help prevent a negative reaction to the blood.  They also have to stay in the room for the first 15 minutes to monitor me and take vitals.  They are looking for any major changes.  But, in particular a spike in temperature.  If that happens they have to stop the transfusion and re access.

It ends up being close to 6:00 p.m. by the time they are done giving me my blood transfusion.  As soon as they are done with that they are ready to start my chemo.  They start the cytarabine but they wait a bit to do the "pushes" of daunorubicin.  You see they have something like on the job training that each Oncology nurse has to do to become chemo certified.  This includes each nurse having to do  three pushes of daunorubicin.  I would find out that this doesn't happen often and that there is a list of nurses that need this opportunity.  They call Elizabeth and she agrees to come in at 6:30 so she can get her chance.  This drug is a nasty drug and there is a certain way that it needs to be administered.  They hook up a syringe of 20 ml of the stuff and it can only be "pushed" at 2 ml per minute and after each 2 ml they have to check for blood return down the catheter.  It takes about 15 to 20 minutes to administer.

The reason for all this is because the drug can actually damage tissue if it is not injected directly into the blood stream.  And they can only give a person so much before they know that it will damage the heart.

Everything goes well and this is the start of my 7 +3 chemo regiment.

Helping strangers that have become friends.

Monday, November 4, 2013

I know that I have been trying to do a chronological approach to my blog and I will get back to that as I can. But, I wanted to write about a couple special people that I have met since I have been in the hospital and some of their trail and path in life that they have blessed me with being a part of.

I am not totally sure how things started.  A small conversation in the elevator.  Seeing each other on the Oncology floor.  Just needing to have that connection with another person that is dealing with cancer and some form of Leukemia.

I met Loraine because she started up a conversation with me about the Tigers during the play offs.  You see she saw me wearing my Tigers shirt and just started talking about sports.  She actually has a lot better handle on the team than I ever could.  She was nice and open and it was nice to strike up this little conversation when we saw each other.

She would also begin to tell me about Steve, her husband.  You see Steve had been in Korea and because of agent orange exposure he came down with a form of Leukemia that affects the lymph nodes.  Or the agent orange caused cancer in his lymph nodes and then about four years ago he come down with Leukemia.  Not sure about the specific details of his Leukemia.  What I do know is that he went through induction and a bone marrow transplant four years ago and went into remission.  They were told that they had a good prognoses to make it seven years and if you make it seven years you are home free.

At one point she introduced me to her daughter Lisa.  Lisa is a breast cancer survivor and had just this year gone through a double mastectomy and radiation treatments, but no chemo.  This was all things that she told me the first time we met.  You see us people going through cancer are pretty open about our experiences. There is not much that we keep to ourselves.

Well here Loraine and Steve are back into the hospital in year four and Steve is having fluid build up in his abdomen.  Loraine and Steve had been here for a couple weeks and they got to go home for a couple days because Steve had been doing better.

I remember the day that Loraine and Steve left and Loraine made it a point to stop by my room and say goodbye.  I was on the phone at the time and I regretted that I didn't take the time to exchange information with her.  I thought it was just a lost chance to continue a friendship that had developed out of a common situation and need. Then three days later I see Loraine in the hall and she stops me.  She tells me they are back and Steve is not doing well.  That they had a good two days, but he started filling up with fluid again and they sent him back here to Butterworth.

That must have been last Tuesday, October 29.  Steve has been having a rough time and I have not met Steve as of yet.  I would see Loraine a couple of times during this week and we would talk a little.  She is such a nice person and I can tell that it hurts her that she might not get that seven years that she thought she had with Steve.

Come Saturday, November 2, the day of the the Michigan vs. Michigan State game.  I was dressed in all my Michigan glory and coming back from a walk when Loraine sees me and strikes up a conversation.  I ask about Steve and how he is doing.  She tells me that he is not doing that well and they have him on morphine. He is still filling up with fluid and because his white blood count and platelets are so low they do not want to operate on him to drain the fluid from his abdomen.  They are trying to give him platelets and get his counts up so that they can do the surgery.  But, until his counts come up they are waiting because he will be more susceptible to infection and bleeding.

So, what was the reason for the reference to the game day and me being dressed in my U of M, Go Blue gear you might ask.  During our conversation Loraine tells me to wait a minute she will be right back.  I ask her if Steve is close by and what room he is in and she tells me 5012 and I follow her to the room.  I follow her in and she goes across the room to get a coat. In the room is Steve, Lisa and her two children.  Next thing I know Lisa is like.  "You can't be in here dressed like that."  I look up and there they are... Spartan fans! Lisa has her green and white on.  Loraine was headed back to the room to grab her Michigan State coat.  Steve is sitting there without a shirt and in his Michigan State sweat pants.  I start laughing...  I say.  "Well we all have our issues."  I say hi to Steve and tell him it is nice to finally meet him.  Steve is a little hard of hearing and on morphine so it is a brief conversation.  We chat a little bit and I have to get back to my room for my chemo treatment.  We exchange a little banter about the game and I tell them I will see them around.

It wasn't till the next day when I was coming back from a walk that I see Lisa at the nurses desk.  She looks distraught.  I ask if she is OK and I get that look that loved ones have when they know that the end can be near.  She is holding some papers and she ask me.  "My dad wants to donate his body to Michigan State University for research.  We need two signatures and we can't sign as family member and the staff can't sign. Will you be a witness for us?"  My heart felt for her right then and there.  I said.  "Of course.  Anything I can do to help."  I tell her I will be in my room and just to come by when she is ready.  That me and my wife will be there and she can be the other witness if they need it.  I also tell her.  "Tell Steve.  Go Green.  But, I don't really mean it."  Just trying to get a smile or a small chuckle out or her.

It is not too much later and here comes Loraine and Lisa.  Cindy, Karlye and I are just sitting in my room hanging out.  They tell us Steve is ready and we all follow them towards the room.  When we walk in there are a couple new faces.  Family members visiting Steve.  It is a small single room and it is a little crowded. Lisa looks a little frazzled, I can tell that she is uncomfortable with what this means.  She thanks us for being the witnesses and I tell her.  "It is his wishes and what he wants."  In hopes that it will ease some of the situation for her.  We chat a little and Cindy and I watch Steve sign three copies of the forms. We sign the forms and I make sure to leave my contact information for them to be able to get a hold of us if they need to. I ask Steve If Lisa had told him what I had told her earlier.  He said.  "No."  I said.  "I told her to tell you Go Green.  But, I didn't mean it."  It got a laugh out of him and at least it broke the ice a little bit.  We were not there much longer.  I had my chemo and lunch coming and I could tell that Steve was in pain and he needed to spend time with his family.

Well today I am going for a walk in the morning and I see Loraine.  She is on her cell phone and she pauses and I say.  "I just wanted to say hi." She motions that she needs to get back to the phone call and I tell her that I will talk to her later.  I can tell something is going on... but not sure what.

About lunch time she stops by just to chat.  She doesn't seem to be in a horrible mood.  She just wants to talk.  I think Steve was off the floor for some test or sleeping because of the morphine.  She spent about 45 minutes in my room just talking about different pranks she had pulled on friends over the years.  She had some good stories and It was nice to just talk about something besides cancer.

I did ask her at the end if I could ask how Steve was doing and what the prognosis was.  I told her she didn't have to talk about it if she didn't want to.  But she did.  She told me that he wasn't doing good and that Dr. Brinker wasn't sure how things would go.  I could tell that she is starting to accept the fact that Steve might not make it out of the hospital this time.  It is not what she wants to by no means.  She tells me some details about their life together.  That they have been together for 45 years and how that is a long time to be together.  I agree and she details how they were high school friends first and starting dating and then decided to marry.  There is more.  More details than I need to go into here.  Let's just say that cancer brings out on honesty and straight forwardness that doesn't happen much in life.  Finally she says she needs to get back and we will see each other around. I tell her if there is anything else I can do to just ask.  She says you did it yesterday.  You and your wife.  You don't know how much that meant to us.  It was meant to be that we knew each other for that reason.  You were there when we needed you.

I went for a few walks today and I noticed at one point that Steve was not in his room.  Next I know about mid afternoon her comes Loraine into my room.  She tells me that Steve had started to go into congestive heart failure so they had to take him down to surgery and get the fluid off his abdomen.  She then tells me that she ask Dr. Brinker if she should call the family and he tells her yes.  She is not sure if he will make it through the night.  That Dr. Brinker does not seem hopeful.

She tells me that if I see them tomorrow he made it through the night.  If not he didn't.  I tell her I am sorry and if there is anything else that I can do please just ask.  I then tell her to tell Steve to "go with God".  I am not sure why.  But, it seemed like the right thing to say at the time.  I guess that I just hope that he can be relieved of his pain and suffering.  I hope that I see them tomorrow.

Hospital day and dealing with finances.

Tuesday October 8, 2013

So, again I am up before 7 and having my coffee and sitting down with the laptop getting more info on my new illness and the hospital.  But, now I am in how is this illness going to effect my family financially mode.  It has been on my mind over the past many days.  But, today I had more information on how long at a minimum I would be off and I needed to know what kind of paycheck I would be getting over this time and what cost the insurance company was going to push my way.

I call my supervisor I ask him about our short term disability benefit and fill him in on the information that was given to me yesterday by Dr. Brinker.  He tells me he thinks it is 100% pay for the first 6 months and then it goes to long term disability at 60%.  But, he wasn't absolutely sure so he tells me he will contact HR and get back with me.

That would have been fantastic... but, he calls back after a little while and informs me that AEP had restructured that benefit and it was now based on seniority.  Something that just changed this last year.  Lucky me!  Because I only have 2 1/2 years with AEP I was only eligible for 5 weeks at 100% and then it drops to 60% for the rest of the first 6 months.  I would also find out later that they go back 12 months from the time of this reported illness and deduct any sick time you have taken from this 5 weeks.  Because I have been dealing with this since June I think I lost an additional 5 days.  So, needless to say this information starts to make me worry.

I had found out from the insurance company that I would be responsible for at least $3000.00 of the bills incurred for me alone during this illness.  We already had some outstanding medical bills from Karlye breaking her wrist earlier in the year that I was planning on taking care of with the extra money I was going to be making in the outage.  So, not only am I not going to be working the outage and now I will not be getting a full paycheck.  I have added an additional $3000.00 plus in bills.  And of course since my doctor tells me that I will be off work 6 months this will run past January so all the deductibles will reset and that will be another $3000.00 plus dollars in deductibles.  So, basic math this illness just added $6000.00 plus in bills to my already reduced income.

I know that most people don't talk about their financial situation because it can be embarrassing to admit that life has taken things out of control for you.  Most will blame the person.  Oh, you were just irresponsible with your money.  It is your fault that you are in this situation.  But, there are times that life puts you in a bad financial situation without you doing it to yourself.  I mean who ever thinks that they will have an illness that might kill them and they will have to be in the hospital for 6 months to a year trying to get cured.  I know I didn't.  The most I planned for is like being off work a week for the flu.  Nothing like this.

We have bills.  Bills that are based on a 40 hour a week paycheck and a two income family.  We live paycheck to paycheck just like everyone else.  I happened to take a pay cut to go to work for D.C. Cook knowing that in three to five years I should be making more than what I was making at Eaton Corporation.  But, for two years I was making less... way less and we scrimped and scrapped  to make it to this point.  You see at Eaton there was always overtime.  I rarely worked a 40 hour week until I came to work at D.C. Cook.  I have averaged 50 hours a week for more than 20 years and many a week more than that.  It was an adjustment going to work for D.C. Cook where overtime was little and far between except when it comes to outages.  A 30 day outage is where you make some money and it helps to pay off bills and get a few extras that you haven't been able to afford until that point.

I won't go into to much more.  But we had setbacks along the way that I had not counted on.  Six month into working for D.C. Cook and on our vacation a pipe burst in our master bathroom and flooded out bathroom and bedroom.  Insurance covered most of the remodel.  But, Cindy and I did all the work.  A project that ended up taking more than a year when all was said and done.  It also cost more than the insurance company paid so we had extra expenses for that.  Then all the extras that go along with two girls in high school with one graduating and needing the gown, invitation and of course grad party all things that a husband and father is going to find a way to supply no matter what.  And then there is college and the expenses of books and tuition.  But, we had been making it.  It just seemed like every time we turned around there was something breaking or needed fixing or replacing.  And now this.

So, I will admit that this might push us into bankruptcy.  I have even asked if it would affect my job if I had to do it and luckily it will not.  One of my biggest fears is that my illness will ruin us financially.  I want to be able to enjoy camping with my kids and grandsons when this is all said and done.  But, as of right now I don't know how this is all going to play out.  How do you plan when you don't know from week to week how long you are going to be in the hospital?  When or if you be able to go back to work at all after you get out of the hospital?

Because of the financial situation Cindy has used some sick time and vacation time to be with me during important events.  She stayed with me the first few days.  But, she had to go back to work.  Not where she really wants to be I know.  I wish the situation was different and we could be together more but we have to settle for one night a week and Saturday and Sunday.  That is the best that we can do.

I would later find out that if this illness last more than 6 months and goes into Long Term Disability then I will still get paid at 60% but I will have to pay for my health insurance.  No idea what that will cost.  What a mess.

So, the day flows like this.  I work on financial stuff as much as I can.  We are expecting a call between 8 and 9 a.m. from bed management at Butterworth Hospital.  Well 10:00 comes and nothing.  So, I call and have trouble getting through to the number I was given.  So, I call the operator and she gets me transferred to finally to bed management.  I talk to Kari.  She tells me that she is the only one and I will be dealing with her directly.  But, at this time there is not a room available and probably will not be until the afternoon sometime.  Because the doctors have to do their rounds and then do all the discharge paperwork.  That usually takes most of the day.  That I am the first one on the list and she will contact me as soon she has an open room.

So I take advantage of the extra time and just keep working on last minute issues.

This extra time has allowed me to setup access to important files and information that I might need while I am in the hospital and I have the ability to pay the bills from there.  Among other things.  It is good to know a little about computers and be able to set this stuff up.

Finally it is around 3:00 p.m. and still no call from the hospital.  So, Cindy and I discuss that one of us should just call Brinker's office and have them deal with getting me a room.  I don't feel like messing with it and that is what they are supposed to be taking care of.  Cindy makes the call and gets them to look into it.  I tell Cindy if it is going to be too late then I will just wait one more day and go tomorrow.  But, we eventually get the call at around 5:30 that a room is available.  Kari tell me they need an hour to clean the room.  But, since I live one hour and twenty minutes away that it will be ready by the time I get there.  I am given instructions that we will have to check in through the Emergency room because the hospital is locked down at 6:00 p.m. But, that they will direct me to my room and get me all checked in.

I think Karlye had something after school and we had last minute things to take care of before we headed to the hospital so we didn't end up leaving for the hospital til after six.  I think we got there around 7:30.  We find and drive into the emergency entrance eventually and explain to the guard what we were told.  He tells us we can park in the garage and come back through that entrance to check in.

We park and get all our luggage and stuff and make the walk back to the entrance.  They direct to a check in person and they show us how to get to the Oncology floor where we are to check in and get to my room.

We do all the check in stuff after we get to the room with the nurse and get settled in for a long couple of days.

The first two things of importance on the schedule are getting a Muga scan and getting my PIC line installed. Both of which initially were to be scheduled for tomorrow.  But at around nine my nurse comes into inform me that they can't do the Muga until 5:00 p.m. tomorrow or we can do it at 10:30 tonight.  I tell her lets do it tonight and get it over with.  Little did I know that it was going to take an hour and a half.  It is after midnight and time for bed.  Tomorrow is another day with new adventures in store.