Saying Goodby

Sometimes you just have to write down the events leading up to something tragic so that you can look at it and move on.  So forgive this indulgence.

The last week with Daddy was great in so many little ways and so sad in so many others.  On Monday we really thought that things were turning around because he'd held on to his platelets all weekend long.  Daddy and I went to the grocery store after treatment and he fell...or at least I thought that he fell.  He said that his knee gave out but now looking back I know that it was his blood pressure that dropped to rock bottom.

He'd been having trouble sleeping and the Dr. perscribed him some very mild sleeping pills.  He took them but he told the Dr. that they made him very unsteady...this was also his blood pressure dropping.

Tuesday found us back at treatment with a schedule for an MRI on Friday.  Wednesday during treatment his Dr. asked to see me without him.  I made an excuse to him that it was probably about the MRI and she told me that his kidney function was getting very bad.  There are numbers that are involved in the whole equation but I couldn't tell you what they were.  I told her that he was not ready to hear this news and she said that I needed to prepare him.  I chose not to because I had a feeling that it would not go over well and that he might just throw in the towel.  So when I returned back to him I told him that it was indeed about the MRI.  On Thursday while in treatment she called me me once again to her office and told me that he either needed to be admitted to the hospital that afternoon or go home to hospice.  I asked her if we could set up hospice for home and she agreed.

  I called my brother and sister before I went back to him in treatment and asked if they could come to the hospital while the Dr. spoke with daddy and they both were able to leave work and come.  Before we went back to the Dr.s office I pulled Daddy off to a quiet corner of the hospital and told him that things were not looking very good.  I explained that his kidneys were beginning to shut down.  He looked at me with such a childlike expression and asked, "Would it help if I drank more water?"  I said, "No, daddy, it's gone too far."  And I started to cry.  My brother and sister arrived right about that time and we went into the Dr.'s office.  She explained what was going on and that she wanted to admit him to the hospital.  Of course he flately refused and said that he wanted to think about it.  He also wanted to have the MRI the next day and that he would make up his mind about what he would do by then.  We decided to go out to dinner at his favorite Mexican restaurant.  He ate his favorite meal and drank a beer and then he and my brother drove to his house where my brother stayed the night with him.  My brother was going to take him to the MRI and I would meet them at the house as soon as I had finished running errands for him.  I was just finished with the first errand when I got a call from my brother.  They were at the MRI place and he thought that maybe daddy had had a stroke.  I was across town but told him that I would get there just as fast as I could.

     I distinctly remember pulling up to the intersection where the MRI place was and upon seeing the ambulance and firetruck and thinking...those are for my father and tearing up.  It was beginning to dawn on me that we were losing him and soon.

I got into the building, told them who I was and they led me back.  EMS personnel assured me that he had not had a stroke but that his blood pressure had bottomed out.  My brother was very scared but was pulling it together.  They explained that they needed to take him to the hospital and we could ride along or just follow along.  They would take good care of him along the way and both my brother and I would follow.  We spoke in the parking lot and decided to call my younger brother and get him on a plane.  We knew that daddy might last the weekend but probably not much past that.

     So they take him to the emergency room and of course it takes at least 6 hours to find a room but we finally got one and when we got him settled the Dr. came in and asked him what he wanted to do.  He said, 'I want to go home and have them take care of me (pointing to us)".  The Dr. told him that he was going to require more care than we could give him and that he really needed to either be in the hospital or have hospice.  He still wasn't getting it truly...but can you blame him?

He reluctantly chose home and hospice and we all stayed and got him settled in for the night. 

I left the hospital around 7, daddy had eaten and was watching FOX news and although he was restless he didn't seem to be in any pain or discomfort.  My brother  texted me about 8:30 and said that daddy had been restless but had fallen asleep and he was headed home.  He would be back the next morning to stay with daddy while he got discharged and I was going to be at daddys to take apart his bed (hospice was bringing a hospital bed) and get his house ready for someone else to stay in.  My sister decided to stay the night at the last minute and so she settled in for the night. 

I got home, filled my husband in on what had transpired (I'd called him previously) and got a beer and went to bed.  I knew that somehow I would be heading back into town sooner rather than later. 

Next thing I knew was that my husband was shaking me awake and telling me we had to get dressed and get into town.  My sister had texted him (knowing me like she does) and I was up and dressed in about 10 seconds.  As we got in the truck...I said to my husband...He's gone....I can feel it....he's gone....

I guess that I could have called my sister to confirm but we headed into town...in silence.  My husband knows me so well and knows that there are times when I just like to have it quiet to think and he gave me that time. 

When I got up to the floor and his room and opened the door.  It was confirmed...he was indeed gone.   My sister and I dissolved into tears and held a little pity party for a few moments.  I asked if my older brother knew, Chickie said yes and that he was on his way to the airport to pick up Chris.  The nurses were wonderful and the funeral home was called.  We waited until Chris arrived and we had a little time together as a family and then we all went home.  Of course I couldn't sleep so I drank a couple of beers, took a shower and headed back into town.  We needed to get his uniform to the cleaners, we needed to let his neighbors know, we needed to start making phone calls and we needed to just be together. 

Chickie said that Daddy's breathing changed about 10:30 and a nurse came it and repositioned his oxygen and his breathing became regular again.  It once again changed and woke her up about 12:35 a.m. and a nurse came in and said , "You know what this mean?", Chickie said, "Is he dying?", the nurse said, Yes, Chickie said, when?, the nurse said, "now".   And he was gone.  Chickie said it was peaceful and his eyes were closed.  He didn't wince or look like he was any kind of pain, it was over  before it sunk in that this was it.  I couldn't have asked for anything any better for him.   His Dr. told me the next day that she felt that he'd made up his mind to go because he didn't want to go home and have strangers in his home.  I agreed with her.  I made the rounds to the 2 infusion rooms to let them know and they all cried with me.  Those women who work those rooms are incredible...they lose people all the time and they go into work every single day with a smile on their face.  I have so much admiration for them.  Not a job that I would want to do.  Special people indeed. 

I must say that I am so proud of my sister and brothers.  We have pulled together and gotten it done.  We knew that he wanted to be buried in his uniform and he also wanted to be buried with his model of the F105 that he got from General Dynamics.  It's a metal model and he'd told me a long time ago he wanted to be buried with it.  We decided that we wanted to have a military funeral.  Flag draped coffin, 21 gun salute, taps and a fly over.  And we got it all.  The fly over was the most moving.  Confederate Air Force did it for only gas money.  It was worth every penny and for 4 planes and 2 pass overs it was $700.00.  We thought that it was more than reasonable.  We would have paid more. 

 I'm feeling adrift so to speak.  My parents are gone, both of them.  Who do I report to now?  I mean I'm almost 60 years old and I still feel like I need my parents guidance.  And I'm a little afraid that when all is done with the estate that I'll really breakdown.  We've been so busy taking care of stuff that it's been easy to be distracted by the fact that they are no longer here.  And their stuff...all their stuff.  We've all been able to take the things that we want but we can't take everything.  There is so much, and so many memories...everything I picked up held a memory.  It's a very strange place to be.

When I started this blog about 3 years ago...it was to help chronicle first my father's and then both of my parents illnessess.  And now it's over, they are gone.  This is a completely new area for me and I'm not sure if I have anything left to say.  I'm going to take a little break and see if I have more to share about this new place that I am in and weather or not I will continue. 




  

In Memorium

Wallace A. "Mike" Kulczyk, Jr.

March 26, 1931 - June 27, 2014

 

You haven't heard from me in a while because I've been with my dad 3 days a week as he had Dr. appointments and was also getting blood and platelets.  We really felt like we were getting a handle on this and then were hit with the news that his kidneys were failing.   We thought that we'd have more time....a lot more time and then it was over.                                                                              

                                              

 



I'm saddened beyond belief and I don't know what to do with myself.  My life has revolved around taking care of him for so long and now that everyone has gone home and family that came in from out of town are gone as well, I'm just out of sorts.  I know that these feelings will pass with time but right now I just need to be sad. 

 

 

 

At 40 minutes past midnight June 27, 2014 Wallace Anthony "Mike" Kulczyk Jr. (Retired Lt. Col. USAF) slipped peacefully from this world and onto his last duty assignment.

 

The only child of Wallace A and Eleanor Kulczyk was born in Worcester, MA on March 26, 1931.

 

From his youngest memory he loved airplanes and made it his life's mission to fly.  A dream he achieved by applying for and being accepted for pilot training with the United States Air Force.

 

Mike married his high school sweetheart, Nancy L. Hartigan, in March of 1953 and they enjoyed a wide variety of duty assignments across both oceans before she preceded him in death in June 2012.

 

Mike lived, breathed and loved everything about airplanes and flying.  He was also a model airplane builder and one of the early pioneers of the ducted fan technology in model airplanes.  His other loves beside his family and flying were gathering the gang together at Lynnies, ice cold beer, mexican food and soup of all kinds.

 

Left to mourn his passing are his four children and spouses; Mark Kulczyk and wife Sheila, Lyn Pool and husband Bob, Chris Kulczyk and wife Laurie and Chickie Shields and husband Mike; and four grandchildren, Christine and Hannah Shields, Sean Kulczyk and Stephanie Del Rio.  He also leaves behind many cherished friends from all over the world.

 

 



Be a Hero!

Sometimes it takes being in the middle of something to realize that there is a real need.  Some of us are born with a need to help those less fortunate, some of us are not.  It’s not a good or bad thing it’s just how it is.  Then there are those who it seems are born with a cause from the womb.  I am not one of those people.  I have not struggled to find a cause, my life is busy enough without taking on something extra.  But if I might just take a moment to address those who would like to do something for someone else but haven’t a clue as to what to do or even know if they have the time to take on something else.  Go donate Blood. 

 It seems like such a simple thing to do but believe me its so much more.  It’s far more complex and literally a lifesaver in more ways than you’ll probably ever realize.  It doesn’t take a lot of time…is relatively painless, you get cookies and juice as a reward and you’ll not miss the blood that you give. 

 My father has become in the last few months...."platelet dependent".  Which means that he needs platelets at least 3 times a week.  Sometimes he gets blood along with the platelets but most of the time it's just platelets.

As I have continued to accompany him I can see just how much blood and platelets are distributed during a day...and that's just 1 day.  So I have to imagine all the infusion rooms in Austin alone, on just one day and it will certainly make your head swim. 

I have given blood in the past when our small community held blood drives but they have not done that in a while now and I haven’t gone out of my way to try and get into Austin to give.  But now that I am in Austin on a weekly basis for my father’s treatment I am going to start giving every time that I can.  Think about it and then go donate, you’ll never regret it and the countless number of people you help will also thank you and I thank you. 

Miracles Happen Here Every Day

This is a not very good picture of where my father, brother and I have been for the past couple of days.  The famous MD Anderson Hospital in Houston, Texas.
As you know my father was diagnosed with Mantel Cell Lymphoma in late December of 2010.  He underwent chemotherapy which put him into remission until December of 2013.  It didn't look like the cancer had returned full blown but there were scans taken and it show a small increase in growth of the lymph nodes in the groin area.  15 rounds of radiation therapy were prescribed and undertaken. 
And it did in fact shrink the areas that they were concerned about.  But the cancer was active and so a new chemo drug was prescribed and my father began to take it.  Unfortunately my father's platelet count also did a nose dive so more tests were ordered and a bone marrow test showed that my father was now suffering with a whole new cancer. 
It's called MDS or Myeodysplastic Syndrome.  It is also a pre-leukemia condition.  The question was...is the Mantel Cell mutating or was this a whole new cancer.    So my father's oncologist suggested that we go see a specialist in Leukemia at MD Anderson.  She paved the way on Monday and they called on Tuesday and we were on the road to Houston on Wednesday with an appointment on Thursday and Friday.
We arrived at our hotel around 6:30 and called my niece to meet us for dinner.  We didn't realize that Wednesday night was also the night for an NBA playoff game and all the restaurants would be crowded.  But we managed to find a nice seafood place and ate and talked and had a great time. 
We got back to the hotel around 10:30 and we all went to sleep...well if you can call it that.  I had a very hard time sleeping just because I was so wound up.  Thinking of all the what if's etc.  And about the time that I think I fell asleep it was time to get up and get going.
We ate breakfast and caught the shuttle that ferries people back and forth to the hospital. 
My first glance at MD Anderson was one of awe.  It's not just one or two buildings.....it's a small city of high rises and complexes dedicated to this cancer and that.  Children, women, you name it and they have a place for it.  It is AMAZING. 
As I walked through the front doors with the hundreds of other people that morning I said to myself, "Miracles Happen Here Every Day".  Not that we were expecting a miracle, but there is hope that there will be a treatment and that we will have bought time and comfort.  
We got checked in and filled out lots of forms and answered the same questions over and over again.  It's all about being thorough.  In due time we were seen by a registered nurse who works directly with our Dr.  She asked a lot of the same questions, filled out more forms and looked over my dads records. 
From then on we went from one floor to the next, getting a chest X-ray, giving blood and finally having them check out his port so that they could give him platelets and blood if necessary.  It was a very long day.  Our last appointment of the day was supposed to be at 4:30 and daddy was supposed to get 2 units of blood and 2 units of platelets.  We know that 1 unit of blood takes 2 hours to infuse.  So that's 4 hours...that would take us to 8:30...if he started on time.  But then there was still the platelets.  Platelets go faster but that would still be a least an hour so that would be 9:30..if he started on time.  Wellll.......we didn't get called until 8:30 p.m....our day started at 7 a.m. and we're still at the hospital at 8:30!  Long story short my father didn't get out of the hospital till around 3:30 a.m. 
My father ordered us to go get something to eat and to bring him back something later on.  So my brother and I left, got some pizza and beer and I stayed at the hotel while my brother went back and stayed with my dad until it was time to leave.  My dad was pretty tuckered out...even if he did not have cancer....he's 83 years old and that's a long day. 
Our appointment with the Dr. wasn't until 11 a.m. but he had to get his vitals taken before he saw the Dr. and we weren't sure how long that was going to take. 
As it turned out it didn't take long and so we ended up sitting in the waiting room for about an hour. 
We were finally called back and we got our time with the Dr.  He physically examined my dad, listened to his heart and lungs, physically touched him to see if he could feel the swollen lymph glands and then re-read his records.
Here is what the plan is....Daddy will stay the course with the new chemo that he was on before we left for MD Anderson.  It takes several months for the results to become apparent and my father has only had 3 treatments so we will stay the course.  The Dr. wants to see him back in a couple of weeks but he also wants him to see a Mantel Cell Expert at the same time.  We asked lots of questions and they were all answered.  We never felt rushed or that any question was stupid or dumb.  You could see the relief in my fathers eyes that he had been given a reprieve of sorts.  He has time to correct his current situation and he will be able to attend some very important family events that are coming up. 

 

This picture just shows a very small portion of the MD Anderson complex, but you can see from just this small portion just how massive the system is.  Every single building in this picture belongs to MD Anderson.                                   

 

I know that we don't have a miracle but we do have the possibiltiy of hope that things are going to get a bit better and my father is going to feel better in a little while.  And that in a way is miracle enough for us.

Trying hard to make Lemonade

Just as we thought we were getting a handle on my father's condition we were hit with yet another stumbling block. 
A simple nose bleed turned into the discovery of a pre-luekemic condition.
We had a Dr. appointment 2 weeks ago on Wednesday or so I thought.  I normally meet my dad at the hospital and because we are out right about lunch time I stay with him and we have lunch together and then I head on home.
Most of our appointments have been on Monday, Wednesday and Friday.  But this week they were on Monday, Thursday and Friday.  I however got it stuck in my head that we still had the  appointment on Wed and went in.  When my father did not show up at the appropriate time I re-checked my schedule that I keep on my phone and saw that I was a day early.  So I called my dad to see if he was up and about and I thought that I'd go over and visit with him for a bit and help me to run some errands if necessary.  When I called him he casually mentioned that he woke up with a nose bleed.  He doesn't get nose bleeds.  So I told him that I would be right over.
I arrived a few minutes later and although it wasn't pouring out of his nose...every time he put a handkerchief up to his nose there was about a quarter sized spot of blood.  I told him that if it didn't stop by 11:30 then we were going to call the Dr. to see what to do. 
It didn't stop and we called the Dr. and were told to go to the Emergency Room.  I called both siblings that are in town to alert them to the condition and we were where we needed to be so there wasn't much else to do except to wait for the Dr.
To make a long story short my dad was admitted for blood transfusion, platelets and a bone marrow biopsy.  He had to stay the night and we all waited together until he was released the next day.
We got the prelim results of the bone marrow biopsy which told us that he had this pre-luekemic condition. 
A new chemo regime was started and he had another nose bleed, he's had 6 or 7 sessions of platelets and 2 more blood transfusions.  Dr. told us yesterday that he needed to see a specialist and so we are off this week to Houston to M.D. Anderson. 
I'm trying very hard to make lemonade with this.  His current Dr. although very competent is just an oncologist.  At M.D. Anderson he will be meeting with a specialist of Leukemia.  He is willing to see us this week and my dad is willing to go seek treatment. 
I know that my father is going to die.  That's a fact.  I hate that but it's the truth and the sooner that I make peace with that the better I'm going to be able to cope when it happens.  What I'm having trouble with is that there are so many family "events" coming up that he really wants to be here for and because my mother isn't here to attend I would like one grandparent who was so much a part of their lives to be able to be present at these life events.  Next month we have 2 graduations....one grandchild is graduating and becoming a Dr. of Veterinary Medicine.  Then 2 weeks later another grandchild will be graduating with his BA in Teaching.  Another grandchild will be getting married in early December.  So I'm thinking positive thoughts and trying very hard to make lemonade out of the lemons that  I've been getting.

Apple Crisp

This just happens to be my fathers favorite desserts, along with ice cream.  I call it Apple Crisp but I've heard it called Apple Betty, Apple Brown Betty and "woe oh Black Betty sham ba lam"...just kidding on that last one.  So we've established that this dessert has several names but I prefer to call it Apple Crisp so for the sake of argument we'll just call it that for this recipe.  And it couldn't be simpler to make so let's get started. 

First off you are going to need some apples.

O.K. so thats 2 apples and a lemon but there is a method to the madness.  Choose 2 different apples to make this dessert.  One should be a cooking apple (I tend to favor Granny Smith but choose what you like) and the other should be an eating apple (I tend to favor a Golden Delicious).  The idea here is that you want some texture to the dish so you have some firm and some soft apple pieces.  I use the lemon to keep the apples from turning brown once you have peeled and sliced them.  See how that works. 

Then you want to peel and slice up the apples and then toss all the slices in lemon juice to keep them from turning brown.  The possoms are gonna be happy, happy, happy tonight.   Fresh apple cores and peels in the compost pile....yummy!!!!

So once the apples are all sliced and put into a bowl and a little lemon juice is squeezed over them, you want to put together the dry ingredients. 

So in a seperate bowl or actually you can put your apple slices into the pan that you are going to cook them in and used the bowl that you previously had the apples in.  That way you have less dishes to do in the end.  See how that works. 

 So you take flour, sugar, butter, cinnamon and nutmeg and mix them all up together

 Cut the butter into the mixture until it's in about pea sized.

Once you've done that then just put the whole mess over the apples making sure that it gets all the way down into the bottom of the bowl.

Now just throw the whole mess into the oven and bake it for about 45 minutes.  It all depends on your oven.  The most important thing is for it to brown up a bit so it might take a few minutes more or less.

Hard to tell the difference between these last two photos but there is a difference.  Here's the recipe.

APPLE CRISP

4 cups sliced and peeled apples..use two different kinds

1\4 cup orange juice or lemon juice

1cup sugar

3\4 cup all purpose flour

1\2 teaspoon cinnamon

1\4 nutmeg..fresh is best

1\2  cup butter

 

Peel and slice apples and sprinkle with the orange or lemon juice.  Then mound the apples in a buttered 9 inch pie plate or 9 x 11 baking dish.  Combine sugar, flour, spices and dash salt: cut in butter till mixture is crumbly; sprinkle over dapples.  Bake at 375 degrees for 45 minutes or till apples are tender and topping is crisp.  Serve with ice cream.  Serves about 6.  This recipe is easily doubled.

 

Update on my Father

I realized a few weeks ago that I had not written an update on my father's health in a while and because it is taking up so much of my time right now I think that I'll post an update. 

Sometime in November my father through a series of Dr. appointments found out that he was no longer in remission.  We also found out that his oncologist was going to be leaving our hospital and going to another city and another hospital system.   We sure were disappointed but the Dr. has to do what he has to do and so we have to be open to welcoming a new Dr. into the fold. 

The new plan was for my father to do radiation.  There were no more additional tumors but the ones in his groin area were showing up again and they were a little bigger than they were before.  The radiation would be only to the groin area and the treatment would be 15 sessions (a session every day) and then they would re-evaluate.  But he could start after the holidays.  So he could drive to Vegas to see my little brother and family for Thanksgiving and enjoy Christmas here after that.

So first part of January we went back to the Dr.'s to schedule his radiation.  Which he did and it did, in fact shrink the tumors that he was experiencing growth in. 

So then a PET scan was ordered.  I know that many of you have heard of a PET Scan but may not know what it is exactly.  

"A positron emission tomography (PET) scan is an imaging test that allows doctors to check for disease in your body.
The scan uses radioactive tracers in a special dye. These tracers are injected into a vein in your arm and are then absorbed by your organs and tissues. When highlighted under a PET scanner, the tracers allow doctors to see how well your organs and tissues are working. The PET scan is able to measure blood flow, oxygen use, glucose metabolism (how your body uses sugar), and much more."

So when we got the results back from the PET scan we were pretty disappointed.  We were thinking that things were really going well except for the little flair up in his groin area.  Unfortunately there were a LOT of things going on.  Belly, neck and lungs were showing signs of "activity".  Especially since we had had such a long period of time where there was nothing to report.  But that is how it is with cancer.  At least in my experience. 

The new oncologist (who is a woman and who we like very much) decided that my father needed to have a colonoscopy to see what was going on in his gut.  But she also felt that because of the new activity he should not go back on the Retuxan.  It was only for maintenance and his cancer seemed to be on the upswing.  She had a plan...there is a new drug that was just approved in November for the treatment of this particular type of cancer.  It was once a third line approach but the results have been so good that they have moved it up to the front line of defense in this type of cancer.  It's called Imbrutinib and it's in pill form.  He would take 4 pills every day at the same time and if all goes well we may see results as early as a month.  Really exciting as it's much better than my dad going back on chemo with all it's harsh effects and I'm not so sure at this point whether he wants to go back on chemo. 

We went right from the oncologists' office to the Gastro guys office.  Fortunately for us....all his Dr.s' are in the same building/Hospital.  Makes it very easy for them to confer with once another as well so that everyone is on board when my father has to have some kind of test.  The gastro guy told us that the colon area was particularly troubling as he saw some thickening and a few other spots that had him concerned.  Procedure would be the next day. 

So here is what was found...there is a small colon cancer.  Very small and apparently not growing (fingers crossed) very quickly.  It needs to come out but his blood levels are not good enough for him to go through surgery.  So plan is...he immediately begins his new medication and keep retesting his blood so that we can see if the medication is working.  If his levels come up enough then they will take him into surgery, take out the small cancer....get in, get out and continue on.  This would be an ideal scenario and I would love that it would happen in just that way.  I'm not a person of prayer because I believe that things are going to be what they are going to be no matter how much you pray for them to be different.  My life, my thoughts.


I hope that things work out ideally and that my father lives to be at least 85.  He will turn 83 next week and just the fact that he has survived this long is pretty surprising.  But there are a few milestones coming up this year that would make his survival all the more sweet because my mother is not here to celebrate them.  We have a graduation from Vet school so we'll have a DVM in the family.  Another child (young woman) will be getting married.  Such milestones that my mother wanted to be here for. 

I'm hoping for the best but I am also knowing that the worst could also happen. 

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