Karlye update Sunday 12-22-13

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

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

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

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

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

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

Karlye update.

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

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

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

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

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

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

Karlye's surgery is tomorrow.

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

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

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

Brinker morning visit.

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

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

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

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

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

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

Back in the hospital.

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

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

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

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

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

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

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

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

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

Biopsy done waiting on results

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

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

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

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

Thoughts

I guess I had more time to work on my blog when I was in the hospital.  Now that I am home it seems like there is less time to post.  But, I will try to keep up with what is going on.

It has been a couple days since my last post.  Thanksgiving has come and gone.  It really doesn't seem real that now Karlye has been diagnosed with thyroid cancer.  Believe me I wish we didn't get that news last week.  I mean I can handle my diagnoses and treatment for AML, but now my focus is on Karlye and what has to happen to get her healthy.  I am more concerned for her than I am for myself.

Part of it is because her course of treatment involves surgery and mine does not.  Surgery concerns me more, I don't care what is said about any surgery there are risks.  My mother was supposed to go to the University of Michigan for a routine procedure and be back to St. Joe in 24 hours.  She past during the night after the procedure.  That is something that has always bothered me.  My mother had been in and out of the hospital all my life and it was the one time that I didn't take off work to be with her, not that the outcome would have been any different.  But, I wasn't there.

A couple nights ago Karlye asked Cindy.  "Why does all the bad stuff happen to us?"  I was impressed by how Cindy handled it.  She told her that we have lots to be thankful for, we have a roof over our head and we are together, for that I am glad.  I am glad that we could be together for Thanksgiving and that I was home when we got the news about Karlye.  But, I too wonder how much more my family will have to endure.

We had been given a couple of recommendations from Dr. Bovenkerk for Karlye's treatment.  A Dr. Blair out of the University of Chicago and a Dr. Bradford out of the University of Michigan. We have decided to meet with Dr. Blair out of the University of Chicago.  Karlye actually made the final choice.  Both doctors are leaders in their field and I am sure either one would be a good choice.

I had also made a phone call to my oncologist Dr. Brinker for a recommendation.  But, I have yet to hear back from him.  I will be seeing him tomorrow for my biopsy and possibly then we can get some information that might help us decide if Grand Rapids is even an option.

Right now I am just not sure what I should do next.  I am not sure when my next stint in the hospital will be, that I am sure we will discuss with Dr. Brinker tomorrow.  I had really been thinking about trying to go back to work even though Dr. Brinker would prefer that I not go back to work until all my treatment is completed.  Now I have to consider what will be going on with Karlye and we are just going to have to see when the specialist is going to want to schedule surgery. We should know more in the next couple of days, by the end of the week I will have the results of my next bone marrow biopsy.  We will know how effective the induction chemo was and I am sure Dr. Brinker will lay out all the possibilities of my continued treatment.  I am just hoping to stay out of the hospital till after Christmas.  But, if that happens I am sure it will be right after that I will be in the hospital for my six days of chemo.

Well, I think that is all for now.  I have other things that I need to take care of.  Later.

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.

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.