All of my doctors; the pulmonologist, rheumetologist and even my oncologist, have told me at least once that being diagnosed with active Sarcoidosis a year after being diagnosed with breast cancer was bad luck. This was both their way of telling me they don't think the two are related, and I hope, to let me know that they know how much it sucks!
The problem with bad luck is that it also limits your choices in life.
First, my choice to have reconstruction disappeared when the Sarcoid went active. No plastic surgeon will touch me. My immune system is too messed up and the risk of infection from any surgery is too high. Plastic surgery is out. Though my rheumetologist did feel it necessary to warn me not to go to L.A. In is opinion, the ethics of many plastic surgeons there are so thin they'd let me try. I'm not going to L.A.
Now, my choices of Sarcoid treatments have been further narrowed. The plan a month ago was to get me stabilized on the steroids and then, if they did not eliminate the Sarcoid symptoms, to move me to the immuno-suppressant drugs that have shown a lot of success with other auto-immune diseases and some good results with Sarcoid. Well, the steroids have stabilized me, but only at high doses. When we go down even 5mg, the chronic cough and breathing trouble kick up. The problem is that the high dose steroid causes sleeplessness, craziness (which may be a result of the first problem!), face and neck swelling, thinning skin and little cuts all over my hands and feet that won't heal, and general moodiness (probably caused by all the other things). Today I'd hoped to get moving onto plan B. I'm sick of the steroids and have no intention of staying on them any longer.
Since our last meeting, my pulmonologist had done more research and had met at length with the rheumetologist. They had other plans for me. They won't put me on the immuno-suppressants at all. Their research turned up more problems with the side effects of the drugs, particularly when lung weakness exists already (just read the fine print of a Humira ad to see the gist of the problem). Further, having had cancer within a short time of going on these drugs can drastically increase the risk of recurrence. They both believe that the risk of serious and life-threatening side effects is too high for me to try the new drugs. OK then, fewer choices.
Instead, I do get to get off of the steroid, but am trading it out for very high doses of inhaled steroids. This should mean fewer side effects, but the doctors can't yet say if the inhaled steroids will be as effective as the pills. We'll know over the course of the next few weeks as I trade the two out.
If it works, then I just stay on these forever, or until the Sarcoid goes into remission (hope hope!). If it doesn't, then I don't know. Peeves the cough will be back, I guess.
I just hope people don't assume I have swine flu!
Monday, April 27, 2009
Monday, April 13, 2009
Too many women
I want to get this down before I get too busy again and forget. Today it struck me that the women in my life are dealing with far too many difficult things.
My friend called me today. She has survived cancer 3 times and just came through her 19th procedure (surgical biopsy) just over a week ago. That one came back clean, thank goodness. But today she called me and left a message she knew that I would get, Sh(**, Sh(*&, Sh)*)! A second needle biopsy came back inconclusive, so she is being scheduled for her 20th surgery, another surgical biopsy. Today is the bad day, the day she just gets pissed off about having to do it again. Tomorrow, she'll pick herself up and do what she has to do. She has a husband, children, and friends who love her and need her, so whatever it is, she'll beat it. But she still has to go through all the steps and the fear again, and that is what pisses her off today!
Wednesday, my dear friend, Carole, is flying out to help care for her friend, who is having a single mastectomy on Thursday. My friend will care for her friend's small children while she undergoes surgery that will change her forever. Carole will be there to hold her hand and tell her she can do this, because she has so many who need her.
I spent this afternoon taking a young refugee woman to the doctor. In her short life she has seen more and survived more than most people see in an entire lifetime. Sitting at the pharmacy she told me, "I am ok, I am happy. God has given me family here." In her I see strength and love and possibility, because she now has people who love her and who need her.
The first friend called me today while I was at the pulmonologist office discussing the return of Peeves, the cough. My intention this morning was to tell him to take me off the steroids. My nails are all broken, my skin is a mess, and my face is a big moon. I'm done! He is not. After a long discussion about options, side effects and trying to get my rheumetologist on the phone, he upped the steroids. Just for 2 weeks to see if it makes a difference. At this point, I don't know what will happen after the 2 weeks, but whatever it is, I'll deal. I have too many people who depend on me to wallow in this little set back and too many women in my life who are dealing with far more than this to let a little steroid craziness hold me back.
My friend called me today. She has survived cancer 3 times and just came through her 19th procedure (surgical biopsy) just over a week ago. That one came back clean, thank goodness. But today she called me and left a message she knew that I would get, Sh(**, Sh(*&, Sh)*)! A second needle biopsy came back inconclusive, so she is being scheduled for her 20th surgery, another surgical biopsy. Today is the bad day, the day she just gets pissed off about having to do it again. Tomorrow, she'll pick herself up and do what she has to do. She has a husband, children, and friends who love her and need her, so whatever it is, she'll beat it. But she still has to go through all the steps and the fear again, and that is what pisses her off today!
Wednesday, my dear friend, Carole, is flying out to help care for her friend, who is having a single mastectomy on Thursday. My friend will care for her friend's small children while she undergoes surgery that will change her forever. Carole will be there to hold her hand and tell her she can do this, because she has so many who need her.
I spent this afternoon taking a young refugee woman to the doctor. In her short life she has seen more and survived more than most people see in an entire lifetime. Sitting at the pharmacy she told me, "I am ok, I am happy. God has given me family here." In her I see strength and love and possibility, because she now has people who love her and who need her.
The first friend called me today while I was at the pulmonologist office discussing the return of Peeves, the cough. My intention this morning was to tell him to take me off the steroids. My nails are all broken, my skin is a mess, and my face is a big moon. I'm done! He is not. After a long discussion about options, side effects and trying to get my rheumetologist on the phone, he upped the steroids. Just for 2 weeks to see if it makes a difference. At this point, I don't know what will happen after the 2 weeks, but whatever it is, I'll deal. I have too many people who depend on me to wallow in this little set back and too many women in my life who are dealing with far more than this to let a little steroid craziness hold me back.
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