Wednesday, December 28, 2011

12/28/12 As time goes by

Today my dear friend, Cyndy, lost her loving and loved partner, Sam Morreale. Cyndy, Sam and I never met in person yet we are as close as one could not imagine. When I look into a mirror, I can see Cyndy giving her heart and soul to the care of Sam. It is a miracle that Sam stayed alive this past year and I am sure he did it because of his love of Cyndy. As he saw Cyndy give every fiber of her body and mind fighting to keep him alive, he knew that he needed to keep fighting and keep hope alive that a cure could happen as we all do with these diseases we all fight. Sam was an accomplished artist and his creativeness oozed into everything he touched.

Whenever a life is ended from a Myeloproliferative Neoplasm which by the way, is considered a slow leukemia, I mourn the lost as if it were a loved one in my family. Cyndy is me and I am Cyndy. Her experience with Sam will be my experience with Joe. I feel what she does. She feels what I feel. I am sure that may make no sense to many people but it is really true. How God put us together is a gift I cherish! Cyndy and I will share future adventures together and share our zest for life. She shared the last year of Sam's life with hundred's of people who learned how to live the final journey of someone you love. It is a sad day today and lots of tears were shed since I feel Cyndy's lost and her ache as well as her future loneliness.

Our Lord God, grant Sam your eternal grace and love. Thank you Lord for letting us know Sam and Cyndy.

Good-bye Sam!

Sunday, December 25, 2011

Coping with New Reality 12/25/2011

Hi All!

It has been awhile since I did an update. For the last couple months I have suffered from Caregivers fatigue I had decided not to write anything since I felt so down most of the time. As hard as I tried to get to a regular positive state of mind. I could not hold onto it for any substantial amount of time.

Joe is still in remission from Mantle Cell Lymphoma as of days of tests at MD Anderson Cancer Center at the beginning of December. Dr. Romaguera is pleased with Joe's blood counts but still wants him to continue infusions of IVIG on a 4 to 6 week schedule thus his next one will be the first week of January. Dr. Verstosvek is also satisfied with Joe's blood counts on the basis of his Myelofibrosis. Personally I have a concern that his counts are on a slow curve downhill but the doctors says he is OK. Joe continues to have to have Mohs surgery for regular pop ups on his face for squamous and basal cell cancer, His last one on the upper part of his ear has taken over two weeks to heal and still he giving him pain.

The most troublesome of Joe's issues is his mental and reasoning capacity. His personality is hard to deal with since he has no interest in much of anything. His lack of communication to me is difficult since I have to analyze his body language and the tone of his voice to determine how is really is. Too many days he wakes up grumpy and any time something will really set him off. I am worn out dealing with the downer personality and constantly trying to figure out how to boost his mood. I miss the intimacy that has been gone for while and it dwells on me more and more.

Yes, I am taking an antidepressant and Joe refuses to acknowledge he is depressed. Once again on a visit to my son's home, he was grumpy and did not participate in conversation. He comes across as he can't get out of there fast enough and it has happened too much in the last year. My granddaughters and son bring me joy but Joe makes it stressful. He is draining me of my self esteem and happiness. Yes, I have discussed this with him but he is not responsive which makes the situation even worse. It is depressing being around him.

My support list encouraged me to write on my blog again since it is a method to get my frustration and stress lessen since it worked during the battle with his Mantle Cell Lymphoma.

I planned some incredible dream trips that were dreams of his or the both of us. I wondering if I have the energy to deal with his gloomy personality and the lack of desire to do anything but go out to eat. Eating out gives him something to look forward to but it is the only thing and that is the issue.

When some very good people tell me what a great life I have and that I should be happy but that makes me even more sadder. Until you walk in another person's shoes, you really do not know what is going on.

I am aware of the many blessings that are there but I need emotional support and a connections that is totally lacking. I can not help that way I feel.

The day WILL be brighter tomorrow because I will find a way to make it that way. The issue is that I will be knocked down.

Where has emotional love gone? Why does it have to be a one way street all the time?

Bah Humbug!