Remembering 9-11





I  had intended to write this, and post it on 9-11 but this week has been nuts with soccer games, and high school open house. So now my post. 

 My father always said those old enough to remember Pearl Harbor can recall exactly where they were and what they were doing when they heard the news of the attack.  It is the same for me and many others in regards to 9-11-2001.  The day that the twin towers and pentagon were hit by terrorists, and the jet that crashed in PA.  Those twin towers were the same buildings that my dad would walk out of when he arrived from the Path Train, when he worked in Manhattan.   Growing up in New Jersey the twin towers were something I loved looking for when driving down the New Jersey Turnpike.  When traveling to New Jersey to visit my parents, sometimes we would travel over the George Washington Bridge, and I would gaze down the Hudson River looking for the twin towers as I loved looking at the New York skyline.  The World Trade Center was a landmark of NYC skyline.  Now when we travel to New Jersey, and drive over the George Washington Bridge my eyes still look down the Hudson only now the towers are gone and sadness overcomes me for all those that died that day and for the family members they left behind.

That fateful Tuesday, the eleventh of September began like all Tuesday's.  I was up early to welcome in the day care children and to get Matt and Dan out the door for the school bus.  Thomas was four and would celebrate his fifth birthday at the end of the month, and Mark was 15 months.  While walking the boys to the bus stop, I can still remember the sky that morning which was an incredible deep blue, without a cloud in the sky. I was thinking to myself, I don't remember a day in which the sky was ever that color blue it was incredibly beautiful was that day. When we got back to the house Good Morning America was on T.V, and the children were all playing while I cleaned up the kitchen.  GMA was getting ready to sign off, when breaking news took over the station to report that a plane had flown into one of the twin towers.  I stopped what I was doing, and was glued to the T.V.  I could not believe what I was watching as smoke was pouring out of the tower.  They were reporting that this must have been an accident when another plane flew into the other tower.  I remember crying thinking of all the people that were on those planes, and in the towers.  I prayed that God would keep safe those that were still alive and bring comfort to the families whose loved ones died.  Later that day when I turned back on the news at lunch time I found out that two other planes had been hijacked, one flew into the pentagon and another crashing into a field in PA, and the WTC was no more.  Both towers had been demolished.

As the days and weeks passed after 9-11, you could not turn on a radio station without hearing a patriotic song.  With each patriotic song, I could not hold back the tears of sadness.  Weeks and months following the attacks, one could notice a change in the people.  People seemed to be kinder, and more patient with one another.  People were turning to God, and pew numbers had increased.  We were seeing a nation on its knees, and it's people were turning away from  material things and turning to what really mattered, God and family.  Our nation's people were asking why God would allow this to happen. 

Many people asked why God would allow something so horrific happen.  Some preachers claimed that God was punishing our nation because of our moral decline, and that good things happen to good people and bad things happen to bad people.  I am sorry but that last statement is the farthest from the truth! Jesus answered this when his disciples asked what caused the man to become blind, was it his sin or the sin of his parents.  Jesus replied that it was neither but so God's glory would be seen.  But I did find myself asking "why" God would allow this.  I also asked the "why" questions when a new tumor was found growing on my lower lumbar which caused many issues for me, and "why" I was losing my ability to walk.  I spent many a day’s crying for what I was losing and asking God why was He allowing all these other things to happen to me as I thought the stage IV cancer was enough!  Back to 9-11, God does not cause tragedy.  Bad things happen because we live in a sinful world that is broken to the core.  A pastor being interviewed on Issues Etc said, "He allows things to happen because "ALL things God works for the good of those who love Him, who have been called according to his purpose" (Romans 8:28)  This has been the verse that I cling to whenever my mind goes a wondering.  The pastor also said that God does not allow evil to happen unless he can create great good.  We find this so true in the death and resurrection of our savior Jesus Christ.  "The world’s worst murder became the world’s only salvation"(Joni Tada) Satan’s motive is to shipwreck our faith, to make us hate God and turn away from him.  Satan wants us to take our eyes off of the cross and Jesus.  God's motive is to ruin the Devil's plan. Ephesians 1:11 tells us that God works everything in conformity with the purpose of His will. 

So where was God on 9-11?  He was the feet and hands of those first responders.  He was in the people that stopped to help and risked their own lives for another human being.  He was in the firemen that went into those towers trying to help others knowing they might not come back out.  He was seen with people bringing food and supplying water to the rescuers that were searching through the wreckage. He was seen in those on United flight 93 that risked their lives to take over the plane and abort the highjackers plans.  Jesus’ light was seen all over those days, and months after 9-11.  God was there, you just have to open your eyes and look past the evil.

One last word on my radiation myelits, I had a 1-2% chance for the radiation treatment to cause my paralysis and I was that 1-2%.  Before writing this, I believed it was just a crap shoot that this would happen to me.  But, now I look at it with my eyes wide open,. Satan’s ultimate goal is to shipwreck my faith, when I take my focus off of Jesus and the cross. I must pray that the Holy Spirit will refocus my eyes back on Jesus.  Besides my own faith that Satan is so eager to try and crumble like the twin towers, he is also after the faith of my children and husband.  He would like no more than to see my entire family turn against Jesus. But, I just cling to God’s promises, “In him we were also chosen, having been predestined according to the plan of him who works out EVERYTHING in conformity with the purpose of his will” Ephesians 1:11, “And we know that in ALL things God works for the good of those that love him, who have been called according to his purpose”. Romans 8:28.  The “good” I might not see right now in my life here on earth but I must trust in God’s word.  It all comes down to trust.  Whom do you trust when bad things happen? Do you trust in  God and his promises or do you crunble under Satan?

This Is the Last Day of Summer Vacation

I have very mixed emotions today as my younger three children all go back to school tomorrow.  Matt went back to school last Saturday and we can really tell there is one less child in the house.  One less shower, one less towel in the wash, one less for the other three to argue with to get out of the bathroom, and one less mess in the kitchen (Matt thinks there is a maid in our house that cleans up after him).

Tonight will be the only night that they will know what they will wear the next day.  Tomorrow there will be a whirlwind of Thomas and Dan trying to get their lunches together and Dan arguing that he can't get into the shower because Thomas is in there.  Tomorrow they will get up on time to shower, make lunches and put on their brand new sneakers. Tomorrow I will have to force them to stand still for one second while I take their picture.  I have been taking those "first day of school" pictures for 16  years.   Tomorrow will start the last year that I have three children attending school in town.  This will be the last year that Mark will be on the later bus schedule.   Tomorrow there will be complete quietness in the house from 7:50am when Mark leaves for the bus till 2:40pm when Thomas walks in the door.  Tomorrow begins afternoon soccer practice/soccer games for Dan.  I pray that the weather does not keep me from any of his games this year.   I pray that God keeps him safe from any injuries this year so that he can enjoy his senior year playing soccer.  Tomorrow brings many firsts and lasts.  At least I have man's best friend or should I say "woman's" best friend, Otis to keep me company while the kids are gone as he jumps in my lap for some good one on one time with "mama".

Long Time No Post = Sorry

I know it has been a very long time since I last posted and lots has gone on.  We are now coming to the end of summer which makes me both happy and sad.  Happy that all the things of summer that I can't do have come to end and sad that the kids go back to school this week.

Since the beach was out this summer we took Thomas and Mark to Lake George.  Originally, Dan was supposed to go with us and that is why I looked for a place right on the lake so he could fish.  Dan at the last minute decided not to join us.  So I booked a handicapped room at a place called "Surfside on the Lake".  The place sounded really good, heated pool, sandy beach on the lake, and what Ed would enjoy the most.... buffet breakfast included in the price!  We also had dinner coupons for specific restaurants we could use them at.  The room that was handicapped accessible..... was not handicapped accessible to what my needs are meaning, I need a raised toilet seat with grab bars, and a roll in shower.  The handicapped room had neither of these which made it much more difficult for me.  What we learned from this trip?  Handicapped accessible means one thing to mom and pop hotels and another to big chain motels.  We now need to either rent a house that is handicapped accessible (no stairs to get in and a LARGE bathroom, or just go to a chain hotel.  Sunday night we went out to eat to a place that was so "Adirondack" and reminded me of places we would go to eat in the Catskills when I was growing up.  When I called to make the reservation and asked if they were handicapped accessible, they said they were.  We we get there and their idea of handicapped accessible is taking you in through the KITCHEN!!!!!     I was needless to say just embarrassed to have to be brought in this way and taken out this way!! We then went and took the boys to play miniature golf and, of course this was NOT handicapped accessible. Ed took me in one way in which I could watch the boys play a few holes.  On Monday, the boys had a good time, they loved the water slide park and we spent the day there.   Our dinner out that night was great as the restaurant had a ramp in! Tuesday was kind of cloudy with some sprinkles here and there.  Thomas went para sailing and loved it!  We also went on a boat tour of the lake.

Tuesday's dinner was an Italian restaurant that again said they were handicapped accessible and said they only had one step in if we came through the bar entrance.  OK, we can do that....NOT!  There were 4 steps in, 2 to get in the first door and another 2 to get into the bar.  Well we had to have one of their waiters help to lift my and my chair up to get in.  Now, that I think about it, we should have asked for the manager and told him since they were not handicapped accessible we would be taking our business elsewhere to another restaurant that was truly handicapped accessible!  It was getting late and everyone was hungry at that point.  OK, so that was our trip to Lake George.  Next year... I think we will try and go back to the cape and rent a house.  Maybe in March we will check some out.

We also took a trip to NJ to visit my mom.  We had a very nice visit with her and it was great that we had all four boys with us as Matt did not get to go with us when we visited her back in February.  It is hard having her in NJ, as we wish we could see her more often then we are able to.





We have come to the realization that we need to sell our trailer as there is just no way of me being able to go camping in it anymore.  It is so sad that this darn disease has taken away something that we did as a family and loved so much.  I was brought up camping with my family.  My dad purchased a trailer when I was 5 or 6 and we spent many weekends camping in the summer at in the winter.  Yes, we did use our trailer in the winter and used it when we would go skiing in the Catskills.  We did not do any winter camping in our trailer mainly just spring, summer and a trip in the fall.  I guess we will need to find other memory makers now.  I just hate to for Thomas and Mark to see camping for our family come to an end due to my darn cancer.  The cancer has also taken away our yearly trip to Cape Cod and sitting out on the beach.  We were a "beach" family.

Cancer and Radiation Myelitis Update:  Well the Xeloda is doing it's job and my cancer is "stable".  My oncologist knows of many woman that have been on this drug for years.  I pray this drug buys me more time, God willing.  I also had a PET scan done in June and it showed low activity in my tumors.  So that is all good news.

A Very Busy February Vacation!

Vacation for Ed and the boys is almost over and it certainly flew by quickly.  President's Day weekend we spent at a hockey tournament with Thomas which was held south of Boston.  This was our first hotel stay since I lost all ability to walk.  I must say.... it turned out pretty good and we will certainly do it again.  We stayed in a handicapped room in the Sheraton.  It had an extra large bathroom that I could wheel into with the wheelchair, a roll in shower with a bench, a raised toilet seat and a sink that I could wheel right up to.  Our only complaint is they need to downsize the furniture in the room to make for more ample room for moving around in a wheelchair.  Of course this tournament fell on  the coldest weekend with a windchill of about "0"!  Oh, I can not wait to get my new wheelchair that we won't need to fiddle with foot rests!!!  The "rink"..... I have never been in such a cold rink with absolutely NO heat!  This rink has Greenfield and Blunt beat by a long shot!  They tied their first game in which Thomas had a penalty shot that he scored on.  Second and third games they lost.  Oh well, the positive is, Thomas played some really good hockey and Ed and I gained some confidence in being able to stay in hotels that are equipped with handicapped rooms. Life moves on!

After coming home from the hockey tournament on Monday, Ed did some wash and the next day we were off to NJ to visit my mom.  We did not get to see her over Christmas because of a major snow storm that hit the east coast.  We finally got to give the GPS that the boys bought Ed for Christmas a try on our trips.  It worked great until we pulled into a rest stop on the NJ Turnpike because Mark had to use the restroom and we lost signal in the parking lot.  As I was trying to figure the darn thing out we missed the exit for the NJ Parkway!  Thank goodness I got it working again so it got us to my mom's place in Lakewood.  We had a really wonderful visit and we got to see her new place which is very nice.  They even have apartments that you can rent for family members to stay in.  Ed said it was like a very elite country club.  My mom looks wonderful and Mark told  her that she looked like she was 71, which of course made my mom laugh and she gave him a big smooch.  Got to love Mark for his way with words, he does remind me a lot of my dad at times. The boys got to go swimming at the beautiful indoor pool and also enjoyed time in the hot tub too.  We had a very nice breakfast with my mom on Wednesday before we had to head back home.

Mark is hooked on legos right now especially the Star Wars by Lego and he had mapped out where the Lego stores were in NJ.  We found one that was on the way home in Paramus.  I thought it was at Paramus Park so we stopped there.  It was kind of funny going in that mall that I had not been to in years.   I remembered it to be a lot nicer then it actually was.  Well we get me out of the car and into the wheelchair and into the mall only to find out that the Lego store was no longer at Paramus Park.... I thought Mark was going to have a major breakdown.  We asked a security guard and found out that it had relocated to the Garden State Plaza which was only down the road.  So back into the car and down the road we went.  Now, when I lived in Mahwah  26 years ago that plaza was just that a plaza, shops that were next to one another but the whole thing was outside.  Now it is two floors with crazy expensive shops!!  Guess you  have to be one of those "Real Housewives of New Jersey" in order to shop there (no wonder there were very few cars at the Paramus Park mall).  Well, the closer we get to the Lego store it was like Mark was drooling.  We finally find it and Mark was in heaven.  We were a little let down thinking it would be a much larger store and have some big figures made out of legos.  Still Mark was so excited and could not wait to get his hands into those bins with the colored legos he needed to build onto his lego Star Wars building he was making.  Mark had been given some money for good grades on his report card and had saved his money from Christmas so he was money bags in that store.  On our way out of the Plaza we missed the exit for route 17 to head to the Tappanzee Bridge so we ended up going home via the George Washington Bridge.  Boy am I glad we don't live in Bergen County anymore, Boston is much easier to deal with LOL

Happy Valentine's Day!



 Happy Valentine's Day and Happy Birthday to our adorable pug Otis, he is four today!



Our adorable pup is 4!


This is how he spends most of his day... sleeping and SNORING

OK, many of you might find pugs kind of ugly but this breed grows on you because of their personality.  I always tell people, if you want a dog that thinks it is a cat then a pug is the dog for you.  Otis and I are attached at the hip.  He loves sitting in my lap and giving kisses.  He follows me around the kitchen (I think he is looking for a morsel of food when he follows me).  He sleeps all morning and eyes the door when he knows Dan will be walking in from school.  Enough of my friend.

Belchertown is officially out of snow days.. last day of school June 23rd.  This week there is no snow in the forecast and we might actually see some melting.  The following week is February vacation and then we are into March.  Granted we have seen some major snow storms in March but maybe we are done with the snow??????????  Oh, how much I want to see the ground.  Right now we are into the winter "yuckies", this is when all the snow on the sides of the roads is black and it just looks like YUCK!

We had a really nice surprise this past weekend as Matt came home.  He did come home for a friends 21st birthday but it was still a great weekend seeing him. 

Lots of things coming up next week.  Tom has a hockey tournament in Needam, MA so we will be traveling..  This will be our first time staying at a hotel since my complete inability to walk.  Praying that it won't be to challenging but looking forward to a weekend away from the doldrums of winter.  Later in the week we are going to visit my mom and the boys are very excited. We where not able to go visit at Christmas because of the snow storm.

It being Valentine's Day I was greeted this morning with super cute cards from Mark and Thomas and roses along with a beautiful heart necklace from my sweetie.  This being a day of "love" I pray that our boys see what "true love" really is by the example that Ed demonstrates daily towards me.  Ed's devotion to me is a clear example of our wedding vows," for better or for worse, in sickness and in health".  I have lost the ability to do simple tasks, getting in and out of bed, getting dressed, bath rooming, and showering.  I need Ed's help to do these tasks that I once could do on my own.  It is almost like I have become another child in our family that Ed needs to take care of.  This man works a very stressful job all day and comes home and must do all the other things I can't do that I once could such as; taking me to all my doctor appointments, doing the laundry, grocery shopping, helping prepare dinner and driving Mark and Thomas to sports.  He does all these tasks out of love for me and our children.  Whoever thought that we would be facing life with me as a para in a wheelchair.  The cancer was one thing we fought together but now throw into that mix as I became that 1 to 2% of people to suffer radiation myelitis as a result from a treatment that was supposed to help fight the cancer that returned in my spine.  I thank my Lord and Savior for providing me with such a loving and caring husband to face life's challenges and road blocks.

 

Getting Back to Blogging

OK, another snow storm equals snow day number 4 for the boys and number 5 for Ed and it is only the end of JANUARY!!!!!  The boys are outside shoveling but I can hear our neighbor's snow blower so I think he came over to give the boys a break.  They are going to have to shovel the snow away from the sliders on the deck so if it ever warms up enough to melt, it won't melt into the family room.  Poor Otis, the snow is now way over his body.  Thomas had to go dig him a trail in the back yard so he can walk him out there and he does not get lost in the snow!  The cat which has had to become an  indoor cat as the only place she can walk without getting lost in the snow is the driveway and our road.  I have had ENOUGH of the snow!!!  Now if I could go out and enjoy it, then I might have different feelings towards it.  I know spring will eventually come but I just wish it was not so far off.

Snow on our deck

More Snow!

Matt has been back at school for two weeks.  He was so great when he was home over semester break.  Besides working for Triton constuction over break he also put in a lot of time building me a ramp in the garage.  He did a FANTASTIC job on it and Ed and I were so proud of the time and effort he put into it.  I can now get out and in the house without anyones help.  I started day rehab at Weldon the begining of the month.  Our goals are to make me more independent, strengthen my core muscles, increase my upper body strength and to get me back to driving.  OT has ended and now I am just going for PT.  Good news is I am getting a better wheelchair.  Whoever thought I would be happy about that!  It will fit me much better then the generic one that I have now, be lighter, easier to push and help my posture so I am not so slummpy.  I was going to get it in orange and black but Dan did not seem so keen on that idea and was seeming like it would cause him major embarrasment me showing up to his lacrosse games sporting the school colors.  I decided on the gray color of the titanium and black upolstry.  Oh well, I tried to show support for our high school LOL.

The ramp that Matt built

We finally had our stock holder appreciation dinner at church.  Jane and the kids did a great job, decorating, making their displays plus the food was great! The menu included; cajun chicken, rice, jambalya, biscuits and for dessert a type of fried dough and kings cake.   All the kids did a nice job speaking about their experience at the LCMS National Youth Gathering. I finally finished the DVD from the photos that Kim took.  That was one thing I had a difficult time sitting down and doing as I had wanted to go as an adult leader so badly but God had other plans.  I was so glad that Kim had a chance to experience the NYG with her daughter as she was able to go in my place. I am thankful that I was able to  attended the one back in 07 with Matt. 

I am still serving on our synod's New England District Youth Commission where I can feel useful and still feel like I am serving Jesus.  We were supposed to have a district senior high lock in but had to postpone it due to.......... SNOW....... ugh!  Love the group of people that I serve with, they are AWESOME!  Lots of things happening for our youth in our district.... junior high retreat in May and picnic for jr and sr high kids in August. 

Time to go get ready for PT!

How I Got Where I Am

     In September of 09 after the passing of my dad, I  had a bone scan and MRI performed due to terrible back pain that I was having.  Results came back that my breast cancer had returned in my spine.  The hardest thing was having to tell our children that I was now stage IV.  Matt and Dan know that my disease is now incurable and considered chronic disease which we pray that will be controlled for a long time, God willing.  Treatment for my spine mets..... radiation since one is very close to my spinal cord and using another hormonal treatment called Faslodex and Zometa.  My oncologist thought this was the appropriate next line of  treatment since I did so well on the previous hormonal Femara. 
     I was on the Faslodex for 5 months and was feeling great in January and back to exercising on our Nordic Track.  In February I started feeling awful, fevers off and on and terrible pain running down my right leg like electric shocks.  By the end of February I had a regular appointment with my oncologist and told him about the pains shooting down my right leg and also numbness in my right big toe.  He stopped the Faslodex and started me on a new oral chemo called Xeloda.  Two weeks later I was having such terrible pain going down my right leg along with loss of being able to void that Ed took me to the emergency room and they ran another MRI.  The MRI showed that I had  a new tumor on my lower lumbar that was all intertwined in the nerves, it also showed that I had disease progression that was now in my liver.  Boy talk about flunking the Faslodex big time!  Treatment..... radiation to tumor and stay on Xeloda.  I was discharged with a foley cath because I still could not void on my own, and now I was walking with a major limp due to numbness in my right leg.  Over the next weeks the numbness in my right leg increased.
     On May 6th I fell down our stairs due to my right knee giving out which caused my right ankle to turn.  A trip to the emergency room and an x-ray confirmed that I had broken my clavicle in three places.  The orthopedic doctor recommended surgery because it was broken in three places and breaks of this nature have a less then 50% chance of healing on their own.  With everything that was going on with my health, we decided that we would see if it would heal on it's own.  Pain patch worked to elevate any pain that I was having.  Thank goodness we did not get rid of our ugly old recliner that was in our bedroom because it became my bed over the next few weeks. 
     One morning in the middle of May I was unable to stand due to the numbness in my right leg.  Another trip to the ER, admission to the hospital and MRI... ugh.  My oncologist was totally baffled because the MRI showed improvement and he could not understand why the numbness was getting worse.  He then calls in a neurologist and he has a nerve conduction test preformed.  Results of the nerve conduction test.. nerves in my legs are fine and working, but he is still stumped and has no idea what the numbness is being caused by so the next step is going to be rehab and a trip to Dana Farber.
     Rehab was the pits! The day they rolled me into the physical therapy room and I saw the line up of patients in their wheelchairs all of them half asleep (most likely due to pain meds) and no one under the age of 75!!!!  I was thinking to my self how can I get out of here and make a quick get away?  I felt like I was in a geriatric ward, and let me tell you the food only confirmed those feelings.  Ugh... I felt like I just went from the Hilton to the Econo Lodge!  My wonderful husband brought me dinner each night because I was so concerned about gaining back all the weight that I had lost prior to going to into rehab.
     My trip to Dana Farber to have a consult with their oncologist neurologist (try and say that five times fast!) proved to give us the answers for my numbness.  The neurologist looked over all my scans and records and came to the conclusion that my numbness was due to radiation treatments that I had back in September of 09.  Diagnosis... "radiation myelitis".  The peripheral nerves were damaged from the radiation.  He was hoping that the numbness would plateau and then the nerves would start regenerating.  The chances of this kind of damage happening are like one in a million and I got to be that lucky one.
     I was discharged from rehab in a wheelchair.  Thank goodness we had renovated the downstairs bathroom and our master bath before all of this happened.  Over the next four months the numbness increased and finally plateaued the end of October.  I am completely numb from my waist down and unable to stand or walk at this time but the good news is my disease is stable and the tumor on my lower lumbar has shrunk, and my broken clavicle.....it healed on it's own.  We move forward and try and find a new normal in all of this.  I have no idea of what God's plans are, all I can do is cling to His promises.  "And we know that in all things God works for the good of those who love him, who have been called according to his purpose"  Romans 8:28