Sunday, January 16, 2011


So I am back from Mayo and as you can see by the look on Dr. Buadi's face he is happy.

Am I in complete response? No. Am I surprised? No. Dr. Gregory did a good job preparing me before I left and I am grateful. Am I responding? Yes. Do my numbers continue to improve? Yes.

The thing is Amyloidosis is not curable. In most cases it is an illness you manage. While some are lucky and go into a remission or a complete response, many do not.

Aside from a few minor hiccups I've led and continue to lead a pretty privileged and wonderful life. I think to some extent that has allowed me to believe that I would be one of the lucky ones who would go into complete response. So far I am not. Here's the thing though. The illness is being managed and that is a success because for most of us with Amyloidosis that's the best we'll do and there's nothing to say I may not go into complete response sometime in the future.

The new plan is to continue the velcade but instead of 4 weeks on and one week off I will go to 4 weeks on and 4 weeks off. This is a maintenance plan and the thinking is I will continue to respond with this treatment. I am thrilled because this ties me down a lot less than the other schedule.

Dr. Leung, my nephrologist at Mayo prescribed Aranesp. Aranesp is a Darbepoetin alfa injection used to treat anemia in people with chronic kidney failure. This should help with my fatigue. He has also prescribed Spironolactone. Spironolactone is used to treat certain patients with hyperaldosteronism (the body produces too much aldosterone, a naturally occurring hormone that increases the reabsorption of sodium ions and water and the release (secretion) of potassium ions in the distal convoluted tubles of the kidneys.) Too much aldosterone can increase blood volume and, therefore, increase blood pressure.

I am scheduled to go back up to Mayo in 6 months and it is my intention to use these next 6 months to get myself in better shape. When I relapsed at about this time last year I was still so weak from the Bone Marrow Transplant that I started my chemo treatment in pretty bad shape. I want to build up my stamina and strength not only to improve the quality of my life but also so that if I relapse again I am not so weak.

I continue and will continue to back off of the steroids. The key is to keep my creatinine under 3.5. If it starts to go back up then we'll reassess. This is the bad part of not being in complete response. As long as I continue to produce the amyloid protein I am not a candidate for a kidney transplant so managing my kidney health is paramount. Luckily my kidneys can function well enough at my current creatinine level that I do not at this time need to worry about dialysis or a transplant. In fact I am losing less protein in my urine even from when I was here last Sept. which is great news.

Dr. Buadi would like me to consult a sleep clinic. I guess it is quite common for amyloid patients to develop sleep apnea and everyone who has had the misfortune of being around me when I sleep says I appear to be struggling to breath. I know I am not waking up rested.

I am trying to think if I've forgotten anything. My attitude is good and I feel a little less like I am treading water now that I have a new plan. I needed to accept the reality of the fact that this illness for me is in all likelihood something I will manage for the rest of my life. I think there was a part of me that always knew that because I named this site Susan and Amy not Susan beats Amy. Amy and I are in this together and I just need to keep the upper hand. However, she is still an unwanted guest and would not be missed if she decided to leave.

Saturday, January 1, 2011



I can't believe it's been over a month since my last post. I'd like to say it's because I have been feeling great and busy with the holidays but it's really been more about this feeling of treading water.

I finished my last scheduled chemo on December 21 and I am going up to Mayo January 10-13. All my numbers have remained steady, meaning not much change from when I went up to Mayo in September. Dr. Gregory has prepared me for the possibility that I may not be in complete response. That does not necessarily mean I will continue on the same treatment going forward. I still may be able to switch to some type of maintenance program or maybe they'll suggest I try something different entirely. There is still the chance I am in complete response. Dr. Gregory is looking at the numbers we have here at RUSH and more detailed tests like a bone marrow biopsy are to be done at Mayo. I have to say though that I appreciate her candor because she knows how devastated I was last September.

I am down considerably on the steroids and my face is a little less round although my body is still shaped like a barrel so I have no waist. I don't miss that crawling out of my skin feeling and I think my roid rage is less, but I do miss the extra energy I had. I get tired more quickly and out of breath with very little exertion. This can make me quite cranky. Matt wasn't feeling well right after Christmas and you often don't appreciate how much someone does for you until they are not available to do it. By the time he was feeling better I was wiped out.

Thanks to the largess of David and his family we are in Moonlight Basin Montana just on the other side of the mountain from Big Sky. We have gotten a ton of snow which has been great but unfortunately yesterday the temperature was well below zero and neither Matt nor Fox ventured out. I of course remain snuggled in the condo reading and watching HGTV. The temp is supposed to go up to a balmy 3 degrees today and as it is our last day everyone (sans me) will give it a go. It is so beautiful here and we are not so high in the mountains that I have been particularly bothered by the altitude. Then again, as I mentioned I haven't done much other than lounge around since we've been here.

A funny note. When we were boarding the plane in Chicago there were a number of flights near our gate going to warmer climates. As we boarded I was a bit slow and the rest of them family were way ahead of me. When I got to the door of the plane I found Ben there waiting for me. He was afraid I'd hopped over to one of the beach vacation flights. Does this boy know his mother or what! It's great to be loved.

I hope everyone had a wonderful holiday season and wish you all the best for 2011.