Journal

It is ironic that my last journal was titled Hope. That is the word I have been struggling with lately. My husband Jim is having a back procedure as we speak called a vetebra plasty, which will repair and mend a collapsed vertebra. He has developed osteoporosis from the lengthy steroid intake. This latest incident of 2 collasped verterbra's has weakened him and required pain meds., which have altered him mental state has well. This is another set back to his thriving recovery. My elderly mother of 83 has also had a recent fall and is bed bound. I find it no longer possible to care for my two loved ones alone, and am seeking assistance. I wonder sometimes how long and how much of this I can endure. People say I am strong. But I am nothing without Jesus Christ. Lately I am low on hope for the future. I must remind myself of the hope in Jesus and my life through Him, although I do not feel it. I must say the words out loud whether I believe it or not. I must hang on to the Hope that I know exist but I cannot see. Janet

Last week I spoke to two caregivers from the Lymphoma Society on the telephone. They are part of a phone support group for caregivers. Both of their husbands had BMT 4 years ago. It was very helpful to hear from them a time frame for my husband Jim's recovery. They both stated that it was 2 years before their husbands went back to work full time. One stated it was 2.5 years for a normal immune system and the other said about 3yrs. Both stated that there is hope at the end of the tunnel and the process is long. They also remarked that their spouse's energy levels took almost 4 years to return to a normal state. However neither had GVHD and both had mud donors. I found that to be remarkable. Now I feel like my Jim is a baby in his recovery of 1 year. We are down to 10mg. of Medrol every other day.  We are hoping to eventually be totally off the evil steroids (Medrol) all together and the prograf. Jim is also having IVIG treatments monthly to try to build his immune system. He is going to PT twice per week and to a Fitness trainer 2-3 times per week and is actually making his appointments. So we are on an upswing and hold our breath. We so appreciate the good days. That's all I know we are a team and are in this thing together. I truely understand the statement "for better or worse" these days. I am grateful I do not have to work and can take care of my husband. June 15th he will get his 2nd cateract surgery and will be able to read and will be able to work some we assume. Every day is truely a gift for all of us. Janimal

I told my husband, Jim that I thought the end of the world was near. I explained how our govenment is taking God out of everything, kids can't pray, last week someone at a sporting event was holding up a sign which quoted a Bible scripture John 3:19 and they were told they could not display their sign. Since Obama took office or should I say Nancy Poloci,  things seem to be getting worst.  His reply was, " good, do you think I'll have a normal bowel movement before the end gets here?" Talk about make a serious conversation turn funny. My poor husband caught a stomach virus, as did everyone else we know, but his has lasted much longer. I hold my breath that it is not GVHD, which I am sure it is not, but the thought always lingers in the back of your mind when that seems to be the one thing we dread the most, as he comes down off the steroids. The set backs seem to come regularly but then so does the getting better again. The roller coaster ride continues but it is better. Once Jim gets cateract surgery he will be able to see again and his quality of life will be much better. Hopefully that will happen at the end of April, right after our one year BMT birthday visit to MD Anderson. Janimal