I Now Have Two Hands.......

.......To type LOL.  I have had to use my night time sleep garment which covers my fingers so that I can not type with two hands and I have had to wear it for the past five weeks. My new sleeve for my arm with lymphedema came in today.  Do I love it?????.....not right now.  I hope that maybe if I wear it for a while that it will break it in and it won't feel like my arm is in a cast, UGH

I bet many of you have no idea where I've been hiding out for the past five weeks. Here goes.......  Back on October 29th New England was hit with a nasty snow storm and it was not the light fluffy type of snow.  Instead we had a storm that brought down trees and limbs, due to many still had leaves.  Those limbs and trees brought down power lines, and made many roads in passable and also caused many areas of New England  to be without power for a week or more.  After freezing in our home for two days and three nights we had to go find a hotel.  Being a para it is hard for my body to heat and cool properly. So off to Lenox, MA we went along with MANY others that were without power.  We were unable to get a handicapped room for the three nights we were there.  Hard to believe a Hampton Inn would only have two handicap rooms in the entire hotel!!!!!!!!  The twenty-four hours we were in a "regular room" we had to use my slide board to get on and off the toilet.  To explain, a slide board is a smooth thin board that goes under my thigh and butt and I slide on it to get from my wheelchair to say a couch, chair and toilet.  Because there weren't any grab bars, and the toilet was lower, and I transferred with a bare butt, it caused an abrasion on my butt.  Lessons learned....1) do not go any where without my commode 2) do not use a slide board bare butt!

When we got home I should have gone straight to the Wound Clinic to have it cared for, but we thought we could get it to heal on our own...not a good idea for anyone that is a para.  Well, stupid me put it off and put it off.  Right before Christmas I had to have a CT scan to check on the cancer in my liver, and a bone scan to check the cancer in my bones.  We are now into the month of January and the CT scan came back that the tumors had slightly increased.  Unfortunately the  drug I was on stopped working.  Praise God that He gave me almost two years with this drug and it put the tumors in my spine into complete remission!  When you are stage IV the doctors work to control the disease.  When one drug does not work or stops working we move onto a another drug.  The week that I was to start Abraxane I developed cellulitis in my lymphedema arm which is an infection, and it had to be taken care of before I could start chemo.  When I began the second cycle of chemo the wound began to get larger and deeper.  Ed was telling me it was getting worse, and I again put off going to the Wound Clinic. I was being seen three days a week for treatment for the lymphedema in my arm and one day a week for chemo.  I was just plain exhausted.  I had promised Ed that I would go as soon as my arm was under control. 

Beginning the week of March 4th, I began running a low grade fever and it was on the 10th Ed took me to the emergency room.  I was admitted to Baystate and taken up to the oncology floor.  If I had to be in the hospital at least I was on the onc floor with many nurses and personal care techs that had taken care of me two years ago.   They are are so good to me, as they moved me to my "princess" private room that I was in the last time.  I miss all of them.  I joke and call the hospital the "Baystate Hilton" due to the awesome nursing and PCT staff and the food.  Yes, I did say "food".  Everything on their menu is low fat and heart healthy.  When  you order veggies they are not cooked to death, but are crunchy!  A turkey sandwich is made with REAL turkey!  So, now you understand why I consider it the "Hilton" of hospitals.  After a few days my wound Dr. explains that my wound is so badly infected that he needs to debried it.  After two weeks in the hospital, the next step is to go to "rehab"... in other words a nursing home so the wound can be properly cared for until it heals enough that I can go home........To be continued...........(the CNAs are knocking at the door to get me ready for bed) UGH!

6 Months Is Way To Long

I have ignored my blog for the last 6 moths due to extreme tiredness.  Many times when I would attempt to start writing I my eyes would begin to close and I could not keep myself awake.  Another problem from my medications is muscle ticks in my hands.  But since I have a ton of time on my hands right now and not as tired which I will explain in my next post that I plan on writing later today.  This post I am going to update everyone on tons of things that are happening with the family.

I will first start with Ed.  God has truly blessed me with a wonderful, loving and caring husband.  Without him I don't know where I or the boys would be.  He continues to be my rock, my caretaker, my shoulder to cry on, and with everything I am going through he still the loving father that drives all over the place to get to the boys sports games.  The boys might not realize it right now, but what an example they have of those words "in sickness and in health".

Matt is in his last semester in college and will graduate from Fitchburg State in 6 weeks.  I can not believe how quickly these four years have passed by.  He participated in the Associated Builders and Contractors club for the past two years. Matt served as the clubs Project Manager, which means that he was head of the club.  Each year this club which is national, participates in a competition in Orlando Fl.  Fitchburg competes with schools such as; Clemson and Texas A&M.  This year there were 36 that competed  and they placed 9th.  Matt was able to take the book that they compiled that was used in the competition when he went for his first job interview this past March.  We are proud to say Matt was offered a position of Project Engineer at the Plumb House in Milton, MA.  I am so happy that he already has a job that he will start a week after graduation!  Also with the joy comes the realization that my baby will no longer be living at home and will be moving out.  My first son that will be leaving our nest.  I am thankful that he will still be in MA and only an hour away from home.  After supporting him for almost 22 years and trying to teach him about managing his money..... this next stage in his life should be REALLY interesting to see!

Seniors with Western MA Division II trophy

Dan had an awesome high school soccer season this past fall as he played sweeper for the team.  The team made it to their division play offs which meant..... crazy hair cuts for everyone.  The seniors hair cuts don't get to weird.  Dan's hair was shaved real close on the sides and his number shaved into the back.  The poor freshman and new sophomores that make the team get the worst.  Dan his sophomore year got the "old man" because it rhymes with "Dan".  Let's just say he looked just like Ed.  The boys went on to win Western Massachusetts Division II.  The next game was the semi finals for Massachusetts Division II, but unfortunately they lost 0-1 but they played their hearts out.

You can get a glimpse of his hair cut.  2012 is shaved into his left side and number is shaved into the back.



After soccer season we were busy with visiting colleges.  Dan is planning on applying to nursing schools at the colleges he applies to.  He applied to 5 colleges four were state colleges and one was private.  At the private he was offered a $58,000 academic scholarship over four years but it was out of reach and he did not want to "have to" play soccer in order to get sports scholarship.  UMASS Amherst which is one of the most difficult state universities to get into he was wait listed because he had malfunctions with electronically sending his application, and it was sent but after their cut off date.  Dan has decided to attend Worcester State University which is only about 45 min. away so that is really nice for having to go get for breaks and such.  Winter has passed and we are now into lacrosse season, and Dan is one of three captains for the high school team.  I can't believe he is on the tail end of his senior year and fourth and final term has started.  Graduation is right around the corner on June 3rd.  Hopefully this boy can find a summer job!

This was taken on dress-up day.  Thank you
Maria S. for the suit it is just fitting him right now
in this photo.

Thomas is a freshman and this winter played JV Hockey for the high school and has spent this year adjusting to being in high school.  He is now playing lacrosse and it is really enjoyable that he is able to play with Dan.  OK, I don't have to much to write about him LOL other than he is a really spiffy dresser.














Mark takes pride in all his school work and continues with straight A's.  He has one of Dan and Thomas' sixth grade teachers.  She mistakenly calls Mark "Dan" when he is in her class.  I guess that tells you he looks just like Dan.  Mark is also wearing glasses and he picked out pair that look just like the pair that Dan wore in sixth grade... poor Mrs. Brown.  Well we are into the start of spring soccer and and lacrosse and juggling the two.  Thank goodness it is only for about two months of this craziness.  I don't have a photo of Mark.  I will have ask Ed to bring my camera up tomorrow when they visit me. 

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.