Looking Ahead

      It has now been almost four weeks since I've been home from the hospital.    I have loved being home even though there have been ups and downs with how I have felt.   It's been hard to measure any day to day progress, but as we look at week to week, I have made progress and have been able to get out a little.
        We met today with the BMT team and I am scheduled to continue with the tandem transplant starting on Monday.   I will receive chemo for three days, have a day of rest and then on Friday have a total body radiation and  receive the donor cells. The chemo and radiation are to suppress my own immune system so that I will be able to better accept the donor cells.    The chemo is not as toxic as I had in the hospital and so I will be able to do this outpatient.   I will also start immunosuppressant drugs next week that hopefully will reduce the chances for Graph vs Host disease.  I would love not to have that complication, and hoping that I will be in the 1/3 of patients who do not have trouble with it.
     So that could be a challenge that could start in a month or it's also possible that it may not  manifest itself for six months.    My other challenge will be to stay healthy and avoid any type of infection.  Infections can actually trigger GVHD, so it will be necessary for me to be even more vigilant about sanitizing and staying away from crowds and sick people.
      The good news we received today is that our 10/10 donor is a go. Out of 16 million potential donors worldwide, he (a 50 European male) was the only one who matched. We consider this to be a miracle.    We are so grateful to this person for being willing and able to donate his stem cells for me.    We do not know anything about him, other than that.   I hope that someday someone I know and love can 'pay it forward' by being a donor.   This is the best treatment for me at this time and if it all works out can allow me a much longer life which I want.
       The other good news is that the first transplant did what it was suppose to and that was to debulk the disease.   I had several tests yesterday, one of which was a CT scan.  It showed that my tumors had shrunk 50%.   And my heart and lungs have remained healthy.
       We have so much to be grateful for!!!   Thank-you all for your encouraging words and thoughts and prayers.  We have benefited from every expression sent to us in its many forms.  
        So we go onward in this very interesting journey that we never wanted.   We feel fortunate that we live in an age where there is treatment and hope.
Love,
Kathy
PS:  I'm glad that I've been able to update the blog and give Katie a break.    She does such a nice job and I may have to turn it back over to her.