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Sujata Kar

A site to record the progress of Sujata Kar, as she undergoes a bone marrow transplant for the treatment of Myelofibrosis

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Posted 2013-01-02T04:03:40Z

January 1: Happy New Year

Dear Friends and well wishers, I have been delinquent in keeping this page current with news of Sujata’s health. But what better way to make up for this lapse than to give you a quick status update on the first day of the year, along with the very best wishes to all for a Happy New Year.   May 2013 bring happiness, health and prosperity for all of you.

In case you are wondering why, in the photo above, Sujata is dressed as an International Secret Agent, read on….

Since her return from the hospital, Sujata has been making steady progress in her battle against Graft versus Host Disease (GVHD), the deadly and fearsome enemy of transplant patients. Her skin which, during her stay at the hospital, looked as though someone had lit a thousand match sticks and dropped them all over her body, is now much better. The intensity of the burning and pain has reduced to a tolerable level and is quite effectively handled by externally applied ointments. The doctors have told us that it will be a while before the GVHD demon is fully driven out of her system. The medicines are clearly doing their job, but, as is generally true for all strong medication, relief is almost always accompanied by undesirable side effects. In Sujata’s case, the large doses of steroids and other immuno-suppressant medicines have taken a heavy toll. Her muscles have become very weak. She now walks with difficulty and has a hard time negotiating stairs. We are getting ready to start a course of physical therapy that will help to bring her strength back. Additionally, the steroid pills have wreaked havoc with her sugar levels, requiring frequent insulin injections during the day. But, hopefully, this is all temporary. The next time I write, I am looking forward to telling you that she is running up and down the stairs like a teenager- in- a- hurry, and enjoying an occasional chocolate ice cream… not the sugar free kind!

Current treatment:

Sujata needs to be at the hospitals three times a week for various treatment procedures. Two of these days are scheduled for Photopheresis and the third for the infusion of a drug called Rituxan, a mild form of chemotherapy. In layman’s parlance, these procedures are designed to tame components of the White Blood cells (the T-cells and the B-Cells, to be precise) so that they are less aggressive in their battle against the donor cells, thus potentially helping to reduce the intensity of GVHD. These hospital visits are long and exhausting and we are hoping that the frequency of these visits will gradually decrease.

And now for Sujata’s mysterious garb in the picture above -- it is to protect her eyes and skin from light, since Photopheresis makes them very sensitive to ultraviolet light.

Life at Home

We have settled into a manageable, if monotonous, pace with the special demands of elaborate medical care, including dispensing a plethora of medicines on time, measuring sugar, injecting insulin and, perhaps the most demanding of all, preparing Sujata’s special diet. If it were not for the help and love of our local friends, we would have a very hard time coping with this dreary routine. They have cheered Sujata up with their frequent visits, supplied us with food on a regular basis and warmed our hearts with their love and caring. They have made our ordeal bearable.

Our New Year's Eve

For Sujata and me, this was going to be a New Years Eve that we would want to forget soon. But, as we were about to find out, this turned out to be an evening that we will always remember. First, to our utter delight, two of our friends brought food over, had dinner with us and stayed to watch TV, as we flipped channels to catch people from all over the world, in different time zones, ushering in 2013 with their special dancing and singing. And then, close to midnight, we started the countdown as the crystal ball in Times Square began its legendary descent. Shortly after it hit the ground and marked the official beginning of 2013, amid the huge cheering on TV, Sujata’s iPAD announced the arrival of a Facetime call. When she received the call, lo and behold, at the other end were all our friends from Lipilekha, who, as they do every year, had all gathered at the White Plains church to have their annual New Year’s Eve party. From there, they called us using Facetime from their iPhones and wished us “Happy New Year” on camera. For a few minutes we became a part of this merry band of revelers who have always been more than friends to us. They have been our family. God bless you all and Happy New Year.

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