Sunday, September 1, 2013

Home Sweet Home!!

Friday night we returned home!!!  It feels like I've been away for months and it has only been a few weeks.  Home is so wonderful. I don't want to see another hotel any time soon. :-)

We have unpacked and are settling back into our more comfortable environs. For at least the next 100 days I can't be in crowds but talking a walk outside is a nice alternative. It's super important that I keep away from germs in efforts to support the transfusion and do what I can to help reduce any chance for rejection.

I will go to Boston one time a week for the next 6 weeks.  Dick continues to be by my side and will be an excellent chauffeur for the weekly trip!

Thank you for the amazing support. I feel all you next to me as we take the journey together.

Friday, August 23, 2013

Day 6 Post Transplant

Sorry for the delay from my last post. The transplant happened right after midnight on August 17th. It was a very emotional event. The hospital chaplin conducted a shirt ceremony and blessed the new stem cells before they were administered. The process took almost two hours. The hospital now consideres August 17th my new birthday! As I mentioned before, Dick and I also celebrated our 45th wedding anniversary on the 17th, and we couldn't ask for a better gift. The nurses continued the celebration by brining us a cake later in the day! A few days later, I learned the stem cells came from somewhere in the United States!

I was discharged from the hospital on Sunday the 18th. Dick and I moved into a nearby hotel as I have many follow-up appotintments during the first two weeks post-transplant. We are spending our days trying to relax and recuperate. Some days/hours have been really good and others have not. I have been assured this is all to be expected. On good days, we are able to get out for walks. There is a lovely park not too far away that we have visited a few times. One day we even escaped all the way to Plymouth to do some laundry! Although I would rather have a 2 week vacation in Boston in good health, it is nice to be back in our home citgy, where I feel Boston Strong!

Thank you for all the continued support, love and prayers, which make this journey easier for me and my family.

Love,

Magali

Friday, August 16, 2013

T -1

My transplant schedule has been adjusted a bit.  The stem cells are scheduled to arrive at the airport sometime today, and have to be procesed, so now my transplant may happen tomorrow, but even as earlier as 1:00 a.m.  This means that August 17th will be my new birthday and my 45th wedding anniversary!  Dick came back to Boston last night and will be with me during the transplant.  These cells are the best anniversary present we could hope for!

Tuesday, August 13, 2013

T -3

So far so good...the staff at B&W have been wonderful.  They refer to each of my days here as "T" minus the number of days until the transplant.  So, today is T-3!  They also refer to Friday as my new birthday!  As everyone knows, I love celebrations so having two birthdays a year will be great.  I really am feeling well and am staying comfortable in my room.  Catching up on Boston news is a treat too.

There is not a whole lot to report today, so I will say good night, and as always, thanks for the love and prayers!

Saturday, August 10, 2013

Part II

I have had a busy few weeks since my last post recuperating at home and preparing for my transplant.  Thank you to my friends and family for your support during that time.

Part II of my treatment has begun.  I visited Brigham and Women's Hospital yesterday to get a new PICC line for my upcoming treatment.  I will be admitted to the hospital later tonight and undergo a few days of chemotherapy before my stem cell transplant on Friday, August 16.  Because we don't have to be to the hospital until 6:00 p.m., Dick and I have enjoyed a wonderful day in Boston.  We have walked around Beacon Hill and the Back Bay and even enjoyed an old favorite- a ride on the Swan Boats!

As I mentioned in an earlier post, Dana Farber found a perfect match for me!  I have recently learned that my anonymous donor is a 24 year old man.  That is all that the donor program will tell me, but I was allowed to write him a thank you note, without providing any specifics about my identity.  As one of my children said, I just hope he can read my handwriting!  It is hard to describe the feelings of gratitude toward this unknown person, who is willing to interrupt his life and undergo a medical procedure in the hopes of saving mine.  My family and I are forever grateful.

I will be in the hospital for a week or more and then staying in Boston for another week or more for following up tests.  I will keep you posted!

Saturday, July 13, 2013

Days 25 & 26

I am finally home and it feels great! The first leg of my journey is complete. I will be home for a quiet two weeks and then off to Dana Farber on Monday, July 29th.  I will continue to use the blog to communicate.

I thank you all for your love, support and prayers - please keep them coming!

Special thanks and love to my 'ghost writers' for all their hard work.  To Dick for always being by my side every step of the way.  I couldn't have done it without you.  xo

Love to all,
Magali

Thursday, July 11, 2013

Day 24

Well, I'm still at UConn and frankly I'm okay with it. It gives me another day to mentally prepare for the transition to home. It also gives Dick another day to pack my clothes and all the wonderful cards of inspiration I received (look tomorrow for a picture of my wall of your cards - simply amazing!!) I had a low-grade fever last night that my doctors want to see come back down before I am discharged. My blood counts held strong another day so that's good sign my body is healing. We will see what tomorrow brings! I couldn't have done all this without your unwavering support and love. xo

Wednesday, July 10, 2013

Day 23

Well, the excitement continues...today I learned that I am scheduled to report to Dana Farber on July 29th to begin a two week prep for my stem cell transplant! This means that my days at UCONN are numbered and there have even been discussions about me going home TOMORROW. In the morning, I will have the usual checks of my temperature and platelets, which will help determine my discharge date. As you can imagine, my head is spinning at this news. I am excited to have successfully completed this round of treatment and to be able to move on to the transplant procedure quickly (I am also excited to see my new bathroom). Once I get to Boston, I will be there for almost six weeks. Truth be told, though, I am also a little nervous about leaving the hospital. I have been surrounded by great care 24 hours a day, which provides a definite level of comfort. However, I know that I have such a great support system of family and friends that once I get home, I won't be alone. Good night everyone- keep your fingers crossed!

Tuesday, July 9, 2013

Day 22

What a day!  My platelet count is up and that is wonderful. However, best news yet - Dana Farber called today and said there is a donor match!!!  It's early in the donor process and I remain positive that it will all work out.  My team of doctors will discuss the specifics and come up with a good plan to get me ready for the stem cell transplant. Until then, I am focusing on getting my body strength back and keep the bad cells out.  Today I also started P/T and did laps around the block - another milestone!

All this excitement makes me tired. :-D  I need my rest, doctor's orders!

Best wishes to all.

Love,
Magali

Monday, July 8, 2013

Days 20-21

Today marks the end of three weeks here at UCONN.  I have said this before, but my days really do pass quickly even though it seems I am not doing much.  I have had nice visits with my family over the past two days, which always makes my day better.  I have been feeling much better than I did at the end of last week and am set to start physical therapy soon.  It won't be as much fun as pool school, but I am excited about it! 
As always, thank you for your kind words, encouragement, support, cards and notes on the blog.  I received an especially touching message from my family in Eastham, MA- take a look under "pictures" to see how amazing they are!

Saturday, July 6, 2013

Day 19

Today I caught up on some much needed rest.  Every time Dick came for a visit he found me sleeping!  But we are up now, waiting to see some more fireworks from our view up on the hill.  While awake, I had more of my routine procedures- platelets, blood and even a nebulizer.  All good things, helping me to get back to better health so I can go home.
For some reason, the e-mail on both my phone and iPad were not working today.  A major roadblock to my social life.  Hopefully this problem will be fixed soon and I can be back in touch.  In the meantime, know that I think of all of you daily and feel blessed for all of the love and prayers that are sent my way!

Friday, July 5, 2013

Day 18

Last night was another difficult night, but today I received the best news I have had in a long time- following my bone marrow biopsy on Tuesday, my doctor reported that the chemo worked and I do not have to do another round!!  Needless to say, Dick and I are on Cloud 9!  I will likely remain at UCONN for another 2-3 weeks until my immune system is strong enough for me to return home and prepare for a stem cell transplant.  Thanks for all the prayers and positive thoughts- they worked, but keep them coming. :-)



Thursday, July 4, 2013

Day 17

Happy 4th of July to all my dear family and friends!  I hope your day was a good one.

I was able to get some transfusions as my temperature was within an acceptable range. My day also included a couple walks around 'the block' with Dick by my side. Since he didn't have work, we were able to spend a fair amount of time together.  He even brought me in a special treat for breakfast. :-D

I am hopeful for another good day tomorrow.



Wednesday, July 3, 2013

Day 16

Not much new to report.  Today has been another day of high fevers and rounds of platelets and blood transfusions.  It's hard to believe more than two weeks have passed.  Despite not doing much, my days seem busy.  Not quite as busy as my life on the outside though and certainly not as fun!

Enjoy your 4th of July!

Magali

Tuesday, July 2, 2013

Day 15

Another tough day with HIGH temperature.   Hotter than it apparently was outside today in CT!  The chills linger and I'm quite cold.  I have a couple lovely prayer shawls to help keep me warm.  I'm not sure they want me to use one now but I snuck it on!  ;-O  My kids have said sometimes its 'easier to ask for forgiveness than it is for permission' (they live on the edge!!!)!

A rash has surfaced on my upper body and the hair is VERY short. I've been poked and prodded today as they work to figure out the fever, rash and begin to look for any progress. I was told again today that I'm at where I should be for day 14/15.  I'm going with that idea and working to push forward.

Take care and I wish everyone a fun and safe 4th!

Monday, July 1, 2013

Days 12-14

The last few days have been a roller coaster ride with many dips in it.  I have a fever that the doctors can't seem to identify its source.  Therefore, my visitors are very limited.  The nausea has been consistent for the past 36 hours.  Sunday was one of the most exhausting days I've had so far.  The irony was, I couldn't fall asleep!  My hair has started to come out and I'll soon have a new summer 'do.  The  doctors assure me this is all part of the game.  I can't say enough how responsive the staff is here.  Anytime something comes up or changes, they are right on it - morning, noon or night!

I know I've said it before but your messages keep me going.  I love looking at new posts daily.  Please know I can't respond but I do read them often. :-)

I hope to see the fireworks this week from my hospital floor with Dick by my side, as always.

Take care.  Love to all.

Friday, June 28, 2013

Days 8 - 11

Sorry for not blogging sooner. It's been a busy and tiring week for both me and my kids who are helping me write this!

I am happy to report that my grandchildren are done with their school years. They all had a fantastic year and look forward to warm fun summer days!

For me, I've been pretty tired the past few days and continue to keep a positive attitude. I have also had a little bit of a fever and can't have any visitors. Thank you all for the notes and cards. I can honestly say the well wishes keep me in good spirits and without a doubt provide great assistance in keeping up the fight! Enjoy your summer days.

Love to all, Magali

Monday, June 24, 2013

Day 7

Today was a whole new day and I felt remarkably better.  My temperature is back to normal.  I received a platelet transfusion, was able eat a bit more and even resumed my walks around the floor.  It was another relatively quite and restful (as well as I can) day.  Dick stopped by a bunch of times- a definite perk of him working here at UConn- and we had a nice night watching Jeopardy.

It's hard to believe that I have already been here for 7 days, and hope that the coming weeks pass as quickly as possible.  Thank you all again for your blog notes, cards and calls. I truly enjoy hearing from the outside world and am very appreciative of your support!

Sunday, June 23, 2013

Day 6

Today has been a challenge.  The negative side effects of the medication have started.  I have been really worn out and developed a slight fever over night.  I also had a chest x-ray because breathing was difficult.  The doctors and nurses have assured me that these symptoms are par for the course in my fight.  Because I wasn't feeling well, my day was quite and I was able to get some rest.  I did start to feel a bit better by the end of the day- well enough to read the Sunday paper and watch a little golf!        

Thanks to everyone for your encouraging e-mails and messages- you continue to brighten my day.  And thank you to Father Moran, who surprised us with a visit from St. Thomas the Apostle in West Hartford, for your words of faith and hope.

Saturday, June 22, 2013

Days 4 & 5

According to Hoyle (those under 50 might need to google this expression!), the medical treatment is coming along.  As expected a little fatigue is starting to set in.  I've had a nice 2 days with friends and family visiting.  Tonight will be a pizza party. After this, I need to slow it down a little.

I love to read all your notes and well wishes.  They help me keep a positive spirit.

Thursday, June 20, 2013

Day 3

I'm still feeling great. It was another day taking walks and visiting with friends and family. I am making the most of each day.  It is so comforting to have your prayers and well wishes.

Wednesday, June 19, 2013

Day 2

Today was a good day - still feeling great.  I had a nice walk and my 'neighbor' even challenged me to a 'race' around the floor....I won!  :o)  I also had a nice time visiting with some friends and family today.  The care remains wonderful and very supportive.

Tuesday, June 18, 2013

The medical staff at UCONN are so wonderful!  They very patiently explained and began my chemo treatment this afternoon.  I feel good today but know a few days from now it will be different.

It truly is a small world!!  I share unbelievable connections with two of my nurses.  Nurse Denise, who is very lovely and chatty, was telling me about her recent trip to visit her best friend in South Carolina and all their wonderful adventures.  As we were talking,  her story and her friend's location sounded very familiar.  The conversation continued and we figured out that her friend is good friends with one of my best friends in SC!  Nurse Fiona is from Glastonbury, where Amy and Mark live.  Naturally we talked sports (everyone in Gbury who is involved with sports knows Mark) and which schools her children attend, come to find out she knows the Landers very well and even ran in a recent local 5K race in honor of Mark's brother.  Amazing!