Suspense and Suspend

Hi all,
I know, the suspense has been killing you - how the heck did all the follow up go, right?

I went through my August follow up tests and basically found them to be a little easier this time around. It helped that the Echo Cardiogram tech respected my dignity (actually made an effort to keep me covered up!) and the IV nurse for my bronchoscopy understood that scleroderma=potentially tough skin.

I'm off the Gleevec. Yep, did it. No drama, although I've been waiting for the "water weight" that I supposedly gained while on the medication to go away. Still waiting...

Dr. K was good enough to point out that my wrinkles are back - he's good like that. I'm not really convinced they were ever gone, but, hey, I'm not a doctor. Maybe I need soft focus mirrors?

I'm feeling really good, I have to say. I've been working out more (I hear it's good for losing "water weight"), and am pretty convinced that any shortness of breath is from good ol' exertion. The red spots are still there, but - this is weird - the white patches are gone! My hands are decent, but occasionally a little tight. Raynaud's is still around. So, looks like the most dangerous things are under control, which is fine by me.

I'm to go for continuous lung function tests every three months. If my lung function drops, I'll have to take something else. I'm not as worried about, say, the drug that causes infertility because Matty and I decided not to have children.

This probably should be another post, but - well, it's not. I know that scleroderma patients can and do have kids and do just fine. This, despite the fact that it seems the entire medical community in Los Angeles is against me having kids! I really think that everyone in a white coat told me not to have kids at one time or another.

I just couldn't get past the thought 'What if these diseases are genetic? What if I pass on something - something worse, even - when I knew it was a possibility?' Can't do it.

Matty and I have pretty much made peace with it. We were always sort of on the fence anyway - we had kind of a "let's see what happens" attitude. So, the decision has been made for us. We could adopt, of course, but the proactive nature of pursuing adoption doesn't really jibe with "let's see what happens."

So, because things look to be on an even keel for now, I'm going to suspend this blog for a while. What? I know, it's a surprise, I've been so diligent about posting! I figure, if there's more to report, I certainly will. If I start with other types of ramblings, I'll start another blog and let you know.

For now, though - thank you to all who wrote such kind words. I can't tell you how much everyone's support has meant to me. To go through a scare like this is, well, scary and I couldn't have done it alone.

Gearing up

Once again, my apologies for not being a diligent and timely blogger. It's been more of a "no news is good news" state of affairs the past couple of months and quite honestly, there hasn't been much to report. I suppose I could have kept you posted on such tidbits as "Got my haircut today!" or "Took my dog to the vet!" but that's for another blog - maybe I could call it The Mundane Chronicles...

Believe it or not, this adventure is coming up on a year! Tomorrow, I have many of those fun follow up tests that I mentioned before - CT scan, lung function, EKG and the dreaded echo cardiogram. Later this month, I have another broncoscopy. All of this is because the clinical trial is essentially coming to an end.

So, the big question is - what's next? I've been feeling great and I daresay more than one person has told me that I look healthier - healthier than what, I'm not sure, but I'll take it. The plan is to take me off the medication for the evaluation phase of the trial. You know, the same medication that has left me feeling better and, according to others, looking better. So, for now, my concern is the unknown - what if I regress? Will they have to put me on one of those other more toxic medications? Just a heads up - if you read about a crazy woman who ransacked all of UCLA for their Gleevec supply and was last seen running toward the beach - uh....you never heard of her.

More to report after the upcoming tests!

Bad blogger, bad!

Ok, my blogger's license should be revoked - I haven't posted in quite a while!

It's like when you know you should call someone and then you don't right away, so more time goes by and you feel like, "Well, I can't call now - too much time has passed!" So finally you feel so guilty that you make the call - or just move without a forwarding number....

What can I say? The combination of lazy and busy is not a good one. Matty and I went on our honeymoon the first two weeks of April - we went to the Chianti region of Italy and it was magical. We miss it a lot. I also started with a new company right around that time, so it's been study study study, meetings aplenty and preparing for in-house training the first two weeks of June.

Aside from a cold that turned into numerous secondary infections for the better part of two weeks, I'm doing and feeling pretty good. I had a lung function test today and the results were about the same as last time. Dr. K said that's to be expected, especially after such a dramatic lung capacity increase last time. My hands have really surprised me - the flexibility is much better! I'm walking around with my hands in fists "just cause" and to be honest, I have no idea how or why things are better. I have not been wearing my brace or doing my exercises (the lazy thing again) so I have to assume things have improved on their own. Hooray!

In three months I'm to have another bronchioscopy test and Dr. K says they will take me off the Gleevec to see how I do without it. I don't think I like the sound of any of this, but it's important to see if I can get by with less medication. I say - if it's not broke....

Matty and I are doing the local walkathon on June 8, and I'm looking forward to it. Tina will be there and it will be nice to meet some people. Tina says she's glad I'm participating because she can introduce me around - as someone with a great attitude, she says. Does she know I'm not all that charming in the AM? I'll take some pics and post em here!

So, mea culpa on not posting for so long. I do enjoy it and I figure, even if one person peeks in to read it every now and then - that's pretty cool, right?

A Ray (Naud) of Sunshine

The puns in the titles of my posts have got to stop! Can't help it, though, I'm a sucker for a good pun...

For those who don't know, Raynaud's Phenomenon is a pesky circulatory problem whereby parts of the body (usually the hands and feet) turn different colors. No, not like Burnt Sienna or other random Crayola Crayon colors! First, skin turns white from diminished blood supply, then skin turns blue from prolonged lack of oxygen, then red when the blood vessels reopen. Rather patriotic, when you think about it. Usually cold temperatures bring on these symptoms, but emotional stress can do it too - if you want to freak someone out who has just upset you, go ahead and turn colors on 'em! Bet it doesn't happen again.

I bring this up because Raynauds has been coming up in conversation more and more (as you've guessed, I'm lots of fun at parties). One of my best friend's sister was recently diagnosed. It often goes hand in hand with autoimmune diseases, but can also occur independently - a long time friend of mine has had it since childhood. Naturally, the cause of Raynauds is unknown.

As for me, yep, I've got it. I had given it very little thought because in the grand scheme of keeping my organs healthy, it wasn't much of a priority. When I wasn't thinking about my organs, my vanity was taking a beating from all the weird skin thickening and red spots. So I guess there just wasn't room for Raynauds!

Though my condition seems to be mild, I've learned that I shouldn't dismiss it. In rare instances, ulcers can form from the continued lack of oxygen and - get this - gangrene can set in! One of the people from the scleroderma chat board reports that she's lost two fingers from it! Holy crap. So, I get that when Tina tells me I should wear gloves more often, she's not messing around.

Takeaway - if I'm coming over to your place for dinner, crank up the heat! Or, seat me by the oven. And, let's all be glad summer's coming!

Scleroderma Fatigue

I think it's set in, all right. When I say "fatigue," I mean something that's going on with some who are close to me. When I was first diagnosed, everyone, and I mean everyone, was so supportive - asking how I was doing all the time, offering to go to appointments with me, etc.

Now...well, I guess it's like most things that go on for a long time - people get over it. Don't get me wrong - my family, Matty and many of my close friends are just as involved as they ever were and I'm so grateful. For others though, it's like the disease has just...gone away. When I announced my great news over the increased lung capacity, some were like, "Oh, great!" and that was that. I feel like I really had to explain it to them - "Um, this is kind of a big deal..." Meanwhile, I was crying and laughing and ready to celebrate (once I stopped crying, of course - kind of a downer to cry at your own celebration party)....

I suspect that part of this fatigue comes from not really understanding the disease. I can't help but think that there would be more made of, say, a cancer patient who was inching toward remission. Not to downplay other diseases, but let's face it, scleroderma doesn't get much press, though that is changing.

I know I have to accept that people have their lives to live and that The Problems of Kim aren't always going to be at the top of their minds - nor should they be. Hmmm, could this be where a scleroderma support group could be helpful? Am I coming around to the idea? Man, I hate it when I prove myself wrong!

I'm Even Breathing When I Don't Have To!

That's right - because my lung capacity has increased (drum roll, please)....by a whopping 9 percent!!!! Up from 57% to 66% - I have two-thirds capacity - woo-hoo!!

Yep, it's big news in these parts. I kept trying to ask Dr. K if these results do indeed mean that Gleevec is working "Come on, doc, just say it! Tell me it's working!" But of course, Dr. K, being a rational, science-minded sort, stopped short of saying that. He did say it's a good sign, but we have to make sure the results hold over time. Whatever! My skin score is the same and the proteinuria is still something to watch out for. Blah blah blah.... My hands are doing their curling under thing again - what? You mean you still have to do the exercises and wear the brace when you're not in physical therapy? OK, so on that one, I've been bad. Matty made me promise (a pinky promise, at that!) to get back to wearing the brace every day. Looks like we'll be battling the hand thing forever, huh?

But did I mention the increase in lung capacity??!!

I Believe Tom Petty Said it Best

Something about, "the waiting is the hardest part?" After all, if I'm going to take life advice from anyone, why not an aging rock star?

I've been in kind of a holding pattern as of late - my next lung function test isn't until later this month. So I'm just dutifully going about my business and taking my meds without too much trouble. At the risk of sounding like one of those obnoxious pharma drug commercials, I have to mention - if any scleroderma patients out there are having those delightful lower GI issues, ask your doctor about the antibiotic Xifaxan. It has made all the difference.

And, I credit this lovely med with making going back to work much easier than I imagained. Oh, there's the ever-present fatigue, but that's not unexpected. It feels great to be productive again, so if I have to take an epic nap when I finish work every day, then so be it.

I am anxious to see the results of the next lung function test. I have no idea if this Gleevec stuff is working or not - my skin looks the same, my breathing feels the same, hands still hurt - all the usual cast of characters are still in place. No better, but no worse. So the deal is if I don't show improvement at this next test, I'll be taken off Gleevec and put on "something else." What that could be is anyone's guess.

I've also been doing a "24 urine" every month and the amounts of protein are increasing, but evidently still in the range of "mild." I read that the average person has about 150 mg of protein in their urine, but mine is around 400 mg. I just can't be average, can I? So it's something Dr. K is watching, but my blood pressure is always on the lower side, so I think we're still ok on the kidney front.