Heading into uncharted waters

This past week and this coming week are very strange for us. We really do not know what to expect, how to properly be prepared, and how to react to different scenario's. This past week has been a busy one for Chris on the medical front, but of course next week is the big one.

On this past Tuesday, Chris had a stress test in Boston with Dr. Falk, the cardiologist. The test was short as Chris has had a bad cold that she really has not been able to shake. Lot's of coughing, stuffiness, general malaise. She said she felt tired on the treadmill after 5 minutes, and her blood pressure dropped a bit, which concerned her. She generally walks about 45 minutes straight everyday, so it was a bit disconcerting to not do as well on the stress test as she would have expected. I think we all think(or hope) this was due to her cold. As such, she has been rescheduled for another stress test on December 31 - what a way to celebrate the end of a tough year.

After this appointment on Tuesday, she met with her primary care physician who put her on an antibiotic to try to get rid of this cold. That was Tuesday and having heard her cough most of the night last night, she has not seemed to have broken this yet. I am hoping today is a much better one for her.

Yesterday, she was at another Boston hospital having a transesophageal echocardiagram. They had to put her out for this as they put a device down her throat to look at her heart more directly. The whole intent here is to look at possible damage to the right atrium and determine whether there may be some kind of an exposure with the proteins that could possible cause a stroke. The treatment is to put her on a blood thinner, possibly for the rest of her life if stroke becomes a concern.

Chris' spirits have been a little lower in the past few days. I am not sure if this is due to her cold, her having to go back to the hospital for more prodding and probing this past week, or the uncertainty of this coming week. We both know that in less than a week our lives will be different than they are now. We have many questions, concerns, hopes, etc. If there is a 50% reduction in the free light chains ( a 50% hematological response) does that mean another high dose chemo next summer? )Below in the last paragraph of this post, I will explain "free light chains). What if it is 90% or 10%. Is there a direct relationship between the percent response and life expectancy? Have there been any new medicines or clinical trials we need to pursue and consider since this past summer? Do we take immediate action or wait for her to get stronger? Clearly a lot of questions running through our mind.

Many of our friends have called to provide words of encouragement in the last few days. Those are all well appreciated. I'll try to accelerate the pace of these posting over the next week as I know how much concern and genuine interest and support exists out there.

Free light chains: We all have a small number of the protein elements that are not attached to the normal plasma protein. Our bodies produce two types of these unattached protein molecules: kappa and lambda. We have small amount floating in our blood and there is a normal ratio between them. A normal range for us is between 3 and 19 mg/L of kappa light chains, 6 and 26 mg/L for lambda light chains, and a kappa/lambda ratio of 6 and 26. Chris' kappa light chains were normal, but her lambda light chains were 660 mg/L. Thus she had more than 33X the normal rate of these lambda light chains floating in her body. These are what end up connecting to each other and forming the insoluble proteins that get lodged in the organ. Our hope is that the chemo has taken these lambda light chains from 660 to under 26. That will be a Complete Hematologic Response (the famous HCR). In a nutshell, that is what we are looking for this coming week - elimination of the lambda free light chains in her body.

Sorry for the medical lesson, but I know many have asked for a little more detail.

Have a great weekend and watch for updates next week. Thanks for your prayers this weekend.