Friday, May 22, 2009

What's up with me

My collapsed lungs pulled me into my pulmonologist's office yesterday. It was about time, the shortness of breath was getting ridiculous.

The bad news was that my lungs "look exactly like someone with emphysema." The good news was that they tested me and I don't need supplemental oxygen.

As you might imagine, it wasn't a fun visit.

I suppose the more meaningful good news is that they aren't going to do any procedure right away to try to reinflate either of the lungs. (My right lung is procedured-out, anyway.) I can muddle along, watching myself carefully, as they huddle up to develop a plan and we schedule something after I've gotten to have some time back on brivanib. The likeliest thing that will happen is that I will have surgery that, essentially, leave a small permanent chest tube with a little valve that can be used to drain out any air collapsing the lung. I doubt this will allow me to resume flying, but it will give everyone peace of mind as I live my life.

The best news is that I have started taking a nerve blocker, neurontin, that has done wonders for my pain. We reduced the size of my fentanyl patch from 100 mcg/hour to 75, I've cut way back on the dilaudid I take for breakthroughs, and I am more comfortable than I have been in weeks. Yay! It's hard to be much of anything to anybody when you are in a lot of pain. The downside, of course, is that the neurontin has left me fatigued in a new way, but there's a good chance that will get better with time. I can also see reducing the fentanyl patch another notch in the near future.

I also had a thought as I left the doctor's office: Could the brivanib be causing some of my shortness of breath? I need to look at the side-effects sheet, but I think that's something that can happen. I may be crazy, but I feel significantly more breathless than I did in NY, even though my lungs look basically the same. Although it wouldn't make a difference in terms of managing it (I can't comfortably walk across the damn house at this point), it would be nice to know that the side effect part of it, at least, was temporary.

I'm also hoping to put something delicious on the smoker this weekend.

For other folks with epithelioid sarcoma, on my scans this started first with harmless little speckles (not obviously malignant nodules), that kind of grow a little and pop. (The move is from periods to O's.) This can blow through the lining of the lung and cause a collapse. Also, much of my disease, apparently, is on the outside of the lung, kind of drilling inside. E-mail me if you're seeing this as an early issue; even our highly experienced NY doctor didn't recognize this as a disease process when it was beginning back in 2008.


Kathy said...

Yes, Brivanib can cause shortness of breath. Enjoy your Memorial Day weekend, SG and keep fighting this with whatever you have. As there are not a lot of proven therapies for Sarcoma, my advice is to look at some anecdotal evidence as well and put those into your tumor fighting toolbox.

I'm jealous. I majored in English. My mother was an English teacher. My brother is an English teacher. My sister and Aunt both majored in English and my kids don't read. Good for your daughter for enjoying a good story. I am currently reading "Songs in Ordinary Time" and as I'm almost done, I'm on the fence as to what to read next. If you have suggestions, pass them along but keep in mind, I'm a chick.

Anonymous said...

In answer to your Q on ES, when the thoraxic surgeon performed a pleurodesis via camera assist he saw what he described as numerous small pebble like tumors on the lining of the lung. He described it as 'not impressive' as opposed to seeing a large massive tumor wreaking all kinds of havoc. But I wonder if this is what is different with ES and why it causes so many pneumothoracies, by attacking the lining with small cancer cell activity versus forming nodules that grow into problems. It was always their opinions that the tumors caused some communication breakdown between the lungs and the chest wall to allow air in. I've had at least three instances of pneumothoracies so something goes on with ES and the lining of my lungs. There's not a significant tumor inside the lungs that would account for the problems. But there's always been PET scan activity/readings in the lungs. So cancer is present and active. To our luck, it's too small to be removed and in a position that destroys both lung and the space inside. Let me know if you hear from others,


CEC said...

Been checking the blog and thinking of you. Peace, love, care and support. Caroline

Anonymous said...

been thinking about you and L and josh

Unknown said...

Any updates? I miss your words and am thinking of you often.

Love K & E