9/24/2010

Me on steroids, grinning and bearing it!

Last weekend was my annual Mother Sans Child weekend with a group of women I have known since Ben was 3. We took a class together called "Mother/Child" and at the end of that class we decided to take a weekend for ourselves up at Green Lake. It was so successful it became an annal event. It is sacrosanct.

It is a time to connect and commiserate and other than last year when I was up at Mayo we haven't missed a year. We started out as 11 women I believe and along the way lost 3. We have been a core group of 8 for quite a while now and even though one of us has moved to Connecticut we still find the time and means to stay close. These unique and special women are more than friends. They are my touchstone. These women know me well, challenge me to be the best I can be and always forgive me when I'm not. I hope I do the same for them. Sometimes due to work or family one or 2 of us isn't able to make it to Green Lake but they are always there in spirit and no less a part of us because they aren't there. This year we were 6 at Green Lake.

As I mentioned in my previous posting I gave my Mayo trip a B but I have to admit that I have been struggling more with the realities of my illness in the last few weeks. Tomorrow is the anniversary of my BMT and it weighs on me. I have been battling with amyloidosis now for a full year and I am tired.

While I am in the process of cutting back on the steroids to take care of the Cushings Syndrome it has to be over time so I have yet to really feel any of the benefits. I am grossly bloated in my neck, face, shoulders and midsection. Not only is it unattractive it is uncomfortable.

When my dear friends arrived on Friday my steroids had quite obviously kicked in and I went on a rant (roid rage) about how it drives me crazy when I run into people that they invariably say "you look great", which in my mind I do not. They suggested I try and express my feelings in my blog so here is my attempt.

First let me say that I know when people say I look great they are trying to be nice and encouraging and for the most part what they are really trying to say is it's nice to see me out and about. I get that. But here's the thing, this illness has played havoc with my appearance and I do not look like myself. I have been told I see it more than others but that makes it no less real to me.

Every time I look in the mirror I am reminded that I have this illness and every time someone says I look good it does the same thing, it reminds me. I wish I didn't care so much but I do. It's bad enough having amyloidosis but do I have to look like crap as well? The answer unfortunately to some extent is yes. I need some level of steroids for the velcade and my kidneys. So here I am battling something else I have no control over. You gain some weght, you diet, you get some wrinkles you botox, you bloat from steroids you grin and bear it. As I said I am cutting back and I am hoping soon to look a little less bloated but until then if you see me could you just say hi, it's nice to see you out?

I know, I'm a pain!

9/15/2010

Okay so with the idea in mind that everyone should try everything at least once, and having a day to kill the Kahan and I decided to check out the Mall of America. We had been told that for some this is a destination, something people will actually plan a vacation around and that it is so large it can take a couple of days to see the entire thing. I don't get it. It's a giant mall with an amusement park in the center. I've seen it and I don't ever need to go back. It's a sad commentary on our society that this is someones idea of a vacation destination. I did however console myself (more on that later) with some excellent retail therapy and and a delicious sushi lunch.

So why did I need consoling you may ask. Dr. Buadi called while we were on our way up to this bastion of retail excitement with the not so great news that the immunofixation number came out positive and we are canceling the bone marrow biopsy. While I am responding to the velcade my amyloidosis is tenacious and I am not in response. I am of course very disappointed. I will continue on the velcade and we will reassess in January.

Overall I guess if I were going to give this trip to Mayo a grade I'd give it a B.

I have developed Cushings syndrome from the steroids. Cushing's syndrome occurs when your body is exposed to high levels of the hormone cortisol for a long time. The most common cause of Cushing's syndrome, sometimes called hypercortisolism, is the use of oral corticosteroid medication. Common signs and symptoms involve weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders, pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms, thinning, fragile skin that bruises easily and slow healing of cuts, insect bites and infections. As I mentioned in my previous post we have a plan in place to start decreasing the amount of steroids I take and the general consensus is that my side effects have been caused by this and not the velcade.

My numbers all indicate that while I am not in response I am still responding to the velcade so I am in no worse shape than I was when I came up here. While I had hoped for better news the news I did receive was not bad. I continue to tread water.

9/14/2010

It's time for you to wake up and snap out of your dreams, especially if you've been lost in fantasies about exotic adventures and far-off lands. There's nothing wrong with letting your thoughts wander, but you have work to do now and can't afford the luxury of drifting in the impractical realms of your imagination. Nevertheless, don't lose touch with your hopes; just express what you can in the real world, for that's where your vision must manifest.

The above is my horoscope for today. Not sure what to make of it. Yet.

I am at Mayo and I have been feeling for the last few weeks as though I have been treading water. Alive, head above water, but not really going or getting anywhere. I have come here for answers fully knowing that with amyloidosis there frequently are none. My numbers are good. The Velcade appears to be doing it's job. Most of the side effects I have been experiencing have been attributed to the steroids rather than the chemo and a plan is in place to begin backing off on those. Rather than 60mg per week I go down to 40. I hope this helps because I actually felt better when I was on less steroids and my creatinine was higher than I do now with a lower creatinine. Time will tell if my kidneys have become steroid dependant and to what extent.

Although the immunofixation number was not in when I saw Dr. Buadi based on my other numbers he was confident enough that it will be a negative number that he went ahead and scheduled a bone marrow biopsy. If this number ends up coming in positive he will contact me and we will cancel the biopsy but he semed pretty positive that would not be the case.

Unfortunately the biopsy could not be scheduled until 1:00 pm Thursday so that means the Kahan and I have entire day to kill tomorrow in Ra CHa Cha (our pet name for Rochester). The bone marrow biopsy will confirm whether or not I am in response. If I am in response, great news and I will continue velcade through December and then we'll see how long it lasts. Hopefully longer than the BMT but there are no guarantees. Unfortunately I will leave here Thursday pretty much right after the test so I will not have the results. I hope to get them Friday.

As always I find myself cautiously optimistic. I can't seem to get as excited as others (my mother, the Kahan and Matt) about my positive numbers because I still do not know if I am in response. Even if it turns out I am I will still be cautious on the optimism front because I was in response from the BMT and it didn't last. In my mind I am still treading water. I'm getting better at it and my head might be a lighter higher out of the water but there are still too many unknowns to feel like I'm actually moving forward.

So back to the horoscope. My father turns 80 next August and he has been talking about renting a house in France for all of us to gather at next summer. A goal I have set for myself is to stay off dialysis until this time next year and control my kidneys with the steroids. Based on my side effects that may not be possible. But I don't think I've been in denial about that. As Alexandra says "stay nimble". I know my ability to make this trip is dependent on where I am with my illness but as the horoscope says I don't want to lose touch with my hopes. I want to continue to plan, whether it's Montana over Christmas break or France next summer and deal with set backs if or when they come. I don't feel like I have to luxury of putting off plans until I get or feel better.

9/4/2010

Things have felt a little out of control the last couple of weeks. The kids are all back in school and we've made it through all 3 curriculum nights but it's been exhausting.

This upcoming Tuesday will be the last week of session 5 and then I'm off to Mayo for the appointments I had to cancel last month. My creatinine number has remained in the low 3's.

Dr. Gregory is concerned that my recent spates of clumsiness are signs of the neuropathy that can be a side effect of the Velcade. I didn't put it together myself because it was not the way the symptoms were originally described to me. I'll mention it to Dr. Buadi when I see him but it may shorten the amount of sessions I can tolerate. In the meantime I am taking things slowly and watching my step.

More after Mayo!