This space seems to have drifted from updating friends and family about the cancer battle to a space for me to just try to work out all of the things I hear from my doctors that make no sense.
This week a couple of things happened that need some pondering.
First, Blue Cross moved me from their Complex Care nurse (read "cancer"), to their Condition Care nurse (read "asthma"). These nurses are supposed to call from time to time to check on my symptoms, update my medicine file, and help me figure out what triggers asthma attacks. I had a long conversation with a very nice nurse. He is not quite sure how to deal with me, since it seems, for now, that what is triggering the asthma is the mass of granulomas in my lymph nodes and on my lungs. Unlike, say chocolate, the granulomas are tough to avoid. We left it with an update on meds to that point and they will call me in a few weeks to check in.
Next, I saw the rheumatologist. I went in as planned, asking how we can get the Sarcoid into remission and explaining that I am done being sick and we need to get on this. He didn't go for my plan. As he explains it, treating the Sarcoid at this point could likely land me in the hospital with pneumonia because my immune system is already down and suppressing it will just make me sicker. And, he wants to be very sure the asthma is related to the Sarcoid before we do anything further on that. WHAT?
According to him, it is entirely possible that the sudden onset of chronic asthma could be completely separate from the onset of Sarcoidosis. So I asked him, just so I'm clear; I got breast cancer as a result of random bad luck; I got Sarcoidosis as a result of random bad luck; and now I got asthma as a result of random bad luck? In his words, he wouldn't put it exactly like that, but essentially, yes.
So, while I was in his office coughing up my lungs, he called my pulmonologist and they decided to add a second asthma medication. This time it's a combo inhaler that I use twice a day. I'm supposed to use that and take the pills for the next 6 weeks. If the asthma is still active, then they'll consider that it is not separate from the Sarcoid, but caused by it and we'll have to look at treating the Sarcoid using the riskier drugs. If the asthma is better, then I'll keep treating that and we'll monitor the Sarcoid separately. I get why they are proceeding this way, it's just that I'd like to be done. I'm tired of having a roster of doctors and now a pile of meds, I want to go back to being healthy! The idea of surviving cancer is that I'm supposed to be healthy after the battle, not sick from a bunch of other random junk!
I think the toughest part of all of this is just that. I don't feel like I've survived. I feel like somehow I failed because I'm still sick. And, I guess because the cancer is still so fresh, I keep going back to all the times I was told that the calcification wouldn't become cancer. Now I'm dealing with something even more worrisome and my fear is that, eventually, a doctor will say that some piece of this turned cancerous. And then I'm back where I was a year ago; even though I promised myself, my dh and my kids, never again.
Friday, January 23, 2009
Sunday, January 18, 2009
Learning More About Sarcoidosis
I keep seeking out information to help me better understand Sarcoidosis. The doctors I've seen have, to a one, been less than helpful when it comes to figuring out how to get rid of it. They all seem to be saying that I have to wait out the flare up and hope it then stays in remission.
I'm not big on waiting things out. I want the flare up gone so I can stop the coughing and get on with my life. To that end, I'm trying to get the asthma treated properly, I've started taking more anti-inflammatory supplements and am being very diligent about the exercise.
Today I was pointed to a Medline tutorial that breaks Sarcoid down into its parts and gives a layman's spin to understanding it. While it also doesn't say getting rid of it is an option, it at least helps explain the disease progression a little better - http://www.nlm.nih.gov/medlineplus/tutorials/sacroidosis/htm/index.htm
I haven't seen these tutorials before. They have them for lots of conditions! http://www.nlm.nih.gov/medlineplus/tutorial.html
This week I go back to the rheumetologist. I've decided to be far more direct with him. Instead of letting him just draw more blood and do more tests, I want him to answer one simple question. How do I get the flare up to stop - NOW?
I'm not big on waiting things out. I want the flare up gone so I can stop the coughing and get on with my life. To that end, I'm trying to get the asthma treated properly, I've started taking more anti-inflammatory supplements and am being very diligent about the exercise.
Today I was pointed to a Medline tutorial that breaks Sarcoid down into its parts and gives a layman's spin to understanding it. While it also doesn't say getting rid of it is an option, it at least helps explain the disease progression a little better - http://www.nlm.nih.gov/medlineplus/tutorials/sacroidosis/htm/index.htm
I haven't seen these tutorials before. They have them for lots of conditions! http://www.nlm.nih.gov/medlineplus/tutorial.html
This week I go back to the rheumetologist. I've decided to be far more direct with him. Instead of letting him just draw more blood and do more tests, I want him to answer one simple question. How do I get the flare up to stop - NOW?
Friday, January 9, 2009
The Decision to Walk Again
For the past few weeks I've been trying to decide whether to do the Avon Walk again. After last year, my friend, Carole, and I had said we would sit out a few years on the walking part and instead volunteer to help the walkers. We'd be helping, but wouldn't have to do the grueling walk and fundraising pieces.
Fast forward 6 months. I've had another surgery, been diagnosed with an auto-immune disease that all my specialists say is "bad luck" to get the year after having breeast cancer, gotten bad infections or viruses 6 times in the past 4 months, and learned I can't have reconstruction until I can get the auto-immune disease in remission. Further, in the short time since I last did the walk I've also personally talked to or heard of no less than half a dozen women my age or younger who have been diagnosed with breast cancer.
As I thought about it these past few weeks, volunteering didn't feel like enough. I still have something to prove to myself and I still need to do something to stop this stupid epidemic so that when my 10-year old is in her 30's we won't have to hold our breaths every time she goes for her annual.
Today I registered to walk again. It just seemed like the right thing to do. Three hours later, my friend called to let me know that her friend, the one who I'd sent information on biopsies to a few days ago, was diagnosed today. My friend will be walking with me.
The walking itself is really for us. We need to feel like we are part of the solution. But it is the fundraising that is most critical. The Avon Foundation is doing the work that is needed to ensure early detection for all women while also funding the research that will someday find the cure. Because, when it comes down to it, this just has to STOP.
Fast forward 6 months. I've had another surgery, been diagnosed with an auto-immune disease that all my specialists say is "bad luck" to get the year after having breeast cancer, gotten bad infections or viruses 6 times in the past 4 months, and learned I can't have reconstruction until I can get the auto-immune disease in remission. Further, in the short time since I last did the walk I've also personally talked to or heard of no less than half a dozen women my age or younger who have been diagnosed with breast cancer.
As I thought about it these past few weeks, volunteering didn't feel like enough. I still have something to prove to myself and I still need to do something to stop this stupid epidemic so that when my 10-year old is in her 30's we won't have to hold our breaths every time she goes for her annual.
Today I registered to walk again. It just seemed like the right thing to do. Three hours later, my friend called to let me know that her friend, the one who I'd sent information on biopsies to a few days ago, was diagnosed today. My friend will be walking with me.
The walking itself is really for us. We need to feel like we are part of the solution. But it is the fundraising that is most critical. The Avon Foundation is doing the work that is needed to ensure early detection for all women while also funding the research that will someday find the cure. Because, when it comes down to it, this just has to STOP.
Subscribe to:
Posts (Atom)
