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.

10/20/2010

No chemo this week so no numbers but feeling well.

10/12/2010

Just a quick update from chemo today. Creatinine 3.1. Yipee! Dare I hope that all those nasty steroids gave my kidneys a chance to stabilize? It's hard not to get kind of excited.

10/6/2010

So I had some surprising news at Chemo yesterday. I have been cutting back on the steroids to combat the side effects of the Cushings Syndrome. Last week my creatinine was up to 3.3 from 3.1. It's a fairly negligible jump and not unexpected but yesterday the creatinine was back at 3.1. Go Figure. Dare I hope that the time I was on the extra steroids was enough time to give my kidneys a chance to stabilize? I haven't really noticed any physical results from backing off the chemo yet and I know that takes time so it could be that as time goes on and the extra steroids leave my system the creatinine could creep back up but for now I'm going to take the gift and enjoy it.

So I have been asking myself lately where does God fit into all this? It seems that recently this topic has come up quite often. I am not an overtly religious person. I consider myself an agnostic. I believe in the possibility. Having been raised Catholic which in my opinion is as much a culture as it is a religion I view myself as a sceptical, questioning Catholic. Which to most Catholics kind of goes against what being a Catholic is. You're either in or you're out. Fish or cut bait. But it's never been that simple for me. When I think of my Catholicism I think of that great line from one of the Godfather movies where Al Pacino in speaking of the mafia says "I keep trying to get out but it pulls me back in." I believe my issues are primarily with Catholicism not with God but as I mentioned I've recently had some very interesting discussions with friends about God and if, where or how he fits in when it comes to things like tragedy and illness.

My father has a cousin who lost a grandson to Lesch-Nyhan syndrome (LNS). It is a rare, inherited disorder caused by a deficiency of the enzymehypoxanthine-guanine phosphoribosyltransferase (HPRT). LNS is an X-linked recessive disease-- the gene is carried by the mother and passed on to her son. LNS is present at birth in baby boys. The lack of HPRT causes a build-up of uric acid in all body fluids, and leads to symptoms such as severe gout, poor muscle control, and moderate retardation, which appear in the first year of life. He went to Duke for a blood cord stem cell transplant and didn't make it.

I went to the wake with my parents and granted the families grief was raw and new but I was amazed by their faith. If I had lost my child at 18 months after prolonged suffering I think I would be angry with God. What kind of a God lets things like this happen to innocent little children. But does that view God more as puppet master?

A friend told me about a friend of a friend who has stage 4 lung cancer and has made peace with God and felt like she's gotten her family to a good place so is ready for the inevitable. I don't feel a need to make peace with God because I do not believe we re at odds.

If there is a Supreme Being, whatever you may call him I believe he/she/it puts us here and we are given free choice. Stuff happens good and bad we deal with it the best we can. I don't believe our lives are orchestrated by a God, therefore I'm not sure I was put here for a reason as some have asked. Is there a final reward for good choices or behavior? As Hemingway says in the last line of The Sun Also Rises, "Isn't it pretty to think so." But in all honesty I don't know. I don't have the kind of faith or certainty that I see in others. I am awed by it. I admire it. Let me be clear though, this doesn't make me sad or leave me feeling wanting or lacking.

Several people have asked me if I've had any great epiphanies since my diagnosis. While my views on some things have changed, like how I want to spend my time or what really matters to me, my feelings regarding God and religion have not. I don't blame him and I don't expect him to cure me. So I try and live the best life I can live which I think is pretty much what I was doing prior to this illness just maybe with a little more urgency now. That said, if my views regarding God and religion haven't changed why would I expect someone with deep faith to change their views?

So I ask again, where does God fit into all this and I guess the answer I come up with is where you need him if you need him.

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.