About two years before she died, she was placed on an experimental medication that my memory tells me cost the government (research?) $3,000 a month. In August of 2005, Mom returned to Mayo Clinic for evaluation, at least part of which was to determine the effect this experimental medication was having on her disease. The tests indicated that her disease was progressing: She was getting worse, fast. Their conclusion? This experimental medication did not work. They took her off the medication.
Less than a month later, in September 2005, Mom and Dad left, as usual, for their winter home in Texas. About the middle of September, I received the first of what was to be many telephone calls from my Dad. Each one was a repeat of the first: "Mom had a really bad night, and I didn't get any sleep. This has been going on for some time, and we can't keep going like this. We need help."
I always responded with, "I'll fly down as soon as I can get a flight." The call ended with an affirmation of that plan, only to be followed up within hours by another call. "We've talked it over. Don't come. We were just tired, and feeling hopeless. We have rested, and we are ok. There is nothing for you to do here. Don't spend the money now. Wait. We'll let you know if things get worse."
Finally, on Oct. 3rd, the number of these emergency calls convinced me to reject their conclusion that I should not fly to Texas to spend time with them. I stayed with them for 8 days, leaving at that time only because they insisted I needed to return to my home and family. Before leaving, I visited my mother's sister, who lived near them in Texas. In our conversation, I found an opening I considered safe for delivering to my mother's favorite sister the message I knew she wouldn't want to hear: "I don't think Mom is going to make it to Christmas. She might make it to Thanksgiving, but not much longer."
I returned home and immediately contacted my four siblings to give them the same message and encourage them to find an opportunity to visit as soon as possible. Three weeks later, on Nov. 3, 2005, while two of my sisters were flying home from their last visit to our mother's bedside, Mom died.
Less than 2 months after she discontinued her experimental medication, Mom's disease killed her. For about two years, taking this medication, Mom lived with her disease; was it because this experimental medication was slowing the pace of the disease? I suspect we will never know, but the drastic change from some deterioration to immediate decline followed by death within 2 months seems to indicate that this experimental medication was having a positive impact. Without a baseline to which we could compare the progression of her disease during those two years, we won't know the answer to this plaguing question.
My Mom kept a daily journal. My Dad still has all volumes of it, and I have read portions of it. She provides more detail than I am able to remember and record here. I wonder, with the lack of research on this disease, if her case with her notes could help someone else suffering from Diffuse Systemic Scleraderma experience a better outcome.
My Personal Post-Note:
Most of us must experience the death of a mother, and I know that God's presence was my most powerful crutch through this difficult time. It is only human, however, to carry the memory of regrets. I have two of them. #1: While visiting her, Mom wanted desperately to have her hair washed. She was too sensitive to cold temperatures to go to the shower and too weak to climb two stairs to reach a sink, so we never washed her hair. #2: When I said "good-bye," she was sleeping in her recliner. That was what she wanted me to believe, and I fell for it. I said "good-bye," in general to the space in which she and Dad were sitting, but I didn't go to her, hug her and give her my love and personal good-bye. These are hard failures to live with, but once again, I know God is giving me strength to accept my failures and live with them in peace, and in the joy of believing that she is better off where she is than she was when she was suffering from this awful disease.
