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.