Quick Update

Things are getting better with Chris all the time:
-She walked 3 times yesterday, combined over 6 miles. Lot's of exercise is critical and she is doing a good job with it.
-She is driving alone regularly, running errands, etc.
-She has been sleeping better and better - probably due to more exercise.
-Her blood pressure has been remaining strong (concern is that it is low) so she may be able to reduce some of that medication. The pharmacy warehouse of medications she has been taking since June has been reduced considerably, but still about 15 pills a day at this point.

Chris' sister Debbie, who managed the home front this summer while Chris and I were in Boston, is flying up for the weekend. She has not seen Chris since the end of August, so it will be a good comparison point.

The cards have been coming in - Thank You! They put a smile on her face everytime she opens one up. We are going to enjoy the weekend, celebrating the 100 days. Your cards are part of that celebration.

Day 95

The support group meeting in Boston this past weekend was very interesting. Chris and I met about 6 other couples who were a combination patient/caregiver, each with their own unique story and road travelled. We met people who had a stem cell transplant with High Dose Chemo 3 years ago, with great success, to another man who had undergone two transplants with no success but is now undergoing an oral chemo regiment, to a third man who was rejected for any transplant due to advanced progression. There was a guest lecturer, a neurologist, who described the symptoms when this disease manifests itself in the autonomic nerve system. This "neuroprathy" is very debilitating where the proteins effectively kill the nerve cells. It does not take much imagination to understand the consequences of what this does to the body. Chris has has no signs of any nerve damage at all (only heart and lungs).

We both walked away from that session with some reconfirmations of what we knew before:
-we were very early in identifying this disease compared to many who went from doctor to doctor with no diagnosis
-Chris was in the majority of sufferers. The normal patient is male over 60 years old, so she is clearly unique. Doing the math, with only 2000 cases diagnosed annually, being a much younger female probably makes her one of 300-400 in the entire US who has this.
-As with most diseases, there are very passionate individuals who lead national advocacy organizations, including lobbying activities, fund raising, tracking clinical trials, etc. These people do unheralded work but make a tremendous difference. They are well respected by the doctors treating this disease as they work tirelessly to fight the battle beyond the hospital walls.

Chris has continued to increase her walking, going a good 5 miles every day. She comes back very tired, and her legs ache, but it is just incredible to see the difference from just two months ago. She has to fight the urge to just relax as her body screams "enough already", but she has been diligent. This is her full time job right now - get herself as strong as possible. She also had a very busy day today as she drove 3 1/2 hours (7 total) to visit Abby. She was the passenger, as her great friend did all the driving, but it was all worth it to go and let Abby see her. Just in the month since Abby has been at school there has been so much progress. it was important for both of them as Chris was unable to go to the drop off back in August. She got to see the dorm, the room, meet the roommate, etc, and this was very important for Chris. I am sure she will be very tired for a day or two, but again, all worth it. Thanks to Sally!!! It meant a ton to Chris.

We now have another incentive to get very health very quickly. Melissa has applied and been accepted for a semester abroad in Perth, Australia. She will go in January and attend classes as part of an Australian nursing college. Chris has always wanted to go to Australia and I would be thrilled to take her there. I have some great work friends in Sydney who have hosted me in Australia many times, and have also been very interested in her progress, and it would be great to get together with a very healthy wife. Much to plan, but a great objective.

Today is Day 95. As Chris has never read the blog, despite our original intent to have her post to it, it will still be a great surprise to her if you could all send a congratulations card that would arrive on Saturday, Sept 27 ( or thereabouts). A simple card whether from Holliston, NJ, Texas, Nevada, Europe, or Asia, just to let her know how much support she has had would be a fantastic gift. It would give her an incredible strength that she will need to get to December and the very scary results of the hell she has gone through. Just wish for a "Complete Hematological Response" (HCR) and I know it will make a difference. The address is in the post below this one.

This woman is made of steel, and has fought an incredible battle. She is both stoic and scared, as we all are, but with the amazing support she has received from all of you, she knows she has hundreds of people personally rooting for her. At day 100, a major milestone, she will have successfully climbed a very steep mountain. From that peak, we can all pray that she can see far far into the future for many years. I'm looking forward to letting you know how surprised she is.

Thanks to all!!!!