1/16/11

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.

1/1/11

HAPPY NEW YEAR!

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.

11/10/2010

Started session 8 today and creatinine still low at 2.99. I don't have my Mayo schedule yet but they are working on it.

We had a great Thanksgiving thanks to Fox & Obel Caterers and Matt and my Mom who managed the bird and most of the cleanup. This has never been one of my favorite holidays because it is so labor intensive on both the front and back end but I must say I was really able to enjoy it this year.

Matt is thankful that my creatinine is a 3.0 or lower and that all the boys have a GPA of 3.0 or higher. I was watching Morning Joe on MSNBC the day before Thanksgiving and Donald Trump was on. I was thankful for the excuse of velcade and steroids to explain why I actually thought he made sense. Shades of Ross Perot. Scary!!

Hope everyone had a great Turkey Day and managed to find something to be thankful for even if that meant only surviving the holiday.

11/17/2010

Just finished session 7 yesterday and creatinine was at 2.97. I am still not noticing a change regarding my appearance regarding the steroids but I am still on them and I've been on them for so long Dr. Gregory assures me it takes time.

We will be hosting Thanksgiving here but as it is my least favorite holiday (way too much work) we've decided to cater it (although we will cook the bird). Also with 3 dishwashers cleaning up is easier. If it won't go into a dishwasher I don't want to own it.

Happy Thanksgiving to everyone!

11/10/2010

I haven't been too good about posting lately but that does not mean things aren't going well. I caught a cold last week so stayed in all weekend and have managed to keep it under control.

In the past when I have been fighting any illness or infection my creatinine has bumped up but my number this Tuesday was once again a 3.

I am still treading water and waiting for my trip to Mayo in January so there really isn't much to say. I haven't noticed a lot of difference in my appearance since being on less steroids so I'm still suffering from Body Dysmorphic Disorder. If things go well at Mayo I am hoping to get off all this stuff and give my body a break. At this point I'd just be happy with a couple of months although years would be great.

10/29/2010

My sister-in-law Alexandra sent this to me and I couldn't agree more so I thought I'd share.

Subject: A thought to share

a thought to share... I like this...

Someone had just finished taking an evening class at Stanford. The
last lecture was on the mind-body connection--the relationship between
stress and disease. The speaker (head of psychiatry at Stanford)
said, among other things, that one of the best things that a man could
do for his health is to be married to a woman whereas for a woman, one
of the best things she could do for her health was to nurture her
relationships with her girlfriends. At first everyone laughed, but he
was serious.



Women connect with each other differently and provide support systems
that help each other to deal with stress and difficult life
experiences. Physically this quality "girlfriend time" helps us to
create more serotonin--a neurotransmitter that helps combat depression
and can create a general feeling of well being. Women share feelings
whereas men often form relationships around activities. They rarely
sit down with a buddy and talk about how they feel about certain
things or how their personal lives are going. Jobs? Yes. Sports?
Yes. Cars? Yes. Fishing, hunting, golf? Yes. But their
feelings?--rarely. Women do it all of the time. We share from our
souls with our sisters, and evidently that is very good for our
health. He said that spending time with a friend is just as important
to our general health as jogging or working out at a gym.

There's a tendency to think that when we are "exercising" we are doing
something good for our bodies, but when we are hanging out with
friends, we are wasting our time and should be more productively
engaged--not true. In fact, he said that failure to create and
maintain quality personal relationships with other humans is as
dangerous to our physical health as smoking! So every time you hang
out to schmooze with a gal pal or sister, just pat yourself on the back
and congratulate yourself for doing something good for your health!
We are indeed very very lucky.

Sooooo let's toast to our friendship with our girlfriends/sisters.
Evidently it's very good for our health.

10/27/2010

Sometimes I feel a little bipolar. Recently I feel like I have been going through a low period but now as I continue to adjust to less steroids I am on the upswing. I have taken control of the things that I can and that has been a huge weight off my shoulders. My office which is much more than that had gotten completely out of control to the point where I was so overwhelmed by the chaos I literally couldn't go into it. It was such a mess I didn't know where to start. At the suggestion of my dear friend DTS I hired this fabulous woman to come in and help me organize. Four exhausting days later you wouldn't recognize the place. This has totally translated into my brain feeling more organized and less chaotic. Controlling the things I can is empowering and calming.

Yesterday I started session 7 of 8 on chemo. My creatine is at 2.96. This is the first time it has been below 3 since the BMT. Maybe Amy has decided to take a vacation after all. I am thrilled and hopeful. Before we backed off the steroids I was not in a good place. I not only didn't look good but I felt awful. I was pretty convinced I was sacrificing my kidneys to some extent by cutting back on the steroids but I was willing to take the risk to feel better. Thankfully that has not been the case.

I tend to temper my optimism so if or when things don't go as expected I am not devastated but it's a little harder this time to not get excited.