When I was going through breast cancer treatment, fellow survivors and even my doctors would talk about the "new normal". All those things you never thought you'd ever have to deal with (cancer, mastectomies, supplements, hormones, body and mind changes), that were suddenly part of your life, and would become "normal".
Sarcoidosis seems to have its own "new normal". Steroids for one. I hate taking them as much as I thought I would. They make me too wired to sleep and my eyes feel like they are far too open all the time (HOW in blazes to guys play baseball on these things?!!). The sleeping pills are worse. I get to sleep, but am wide awake at 3am and ready to start my day, knowing that I'm going to crash and burn at 3pm. All of the pills I have to take 3 times a day are just as bad, I hate chasing down breakfast with a pile of meds and a shot from an inhaler. But the asthma attacks, those are probably the scariest "new normal".
Yesterday I went to the dentist. It wasn't anything unusual, but I did have to ask them to stop cleaning every few minutes so I could cough. After though, I couldn't stop coughing, I couldn't breathe properly and felt like I was being shoved in the chest and drowning all at once. It wasn't even until later, after I'd gone home to lie down and rest after the dentist (?!), when I was trying to talk to my boss, that I realized what happened. He got very disconcerted by my struggling to hold a conversation and asked what was going on. I explained and he said, "oh yes, asthma attack". Who knew?!
Up until this point, nothing ever triggered a big attack. I've just had days where it is harder to breathe or easier to breathe, coughing jags or pressure. Not everything all at once.
Asthma is a common disease and I am just now understanding how scary it can be. I have friends with asthma, friends whose children are on nebulizers and treatments for asthma who worry constantly that their child will have an attack at school or in the park. I get why they worry now. Because it is definitely scary.
After yesterday's episode, I realized that this is my new, new normal. I battled the cancer and have won that battle so far. But the Sarcoid. This thing is going to be longer and tougher to beat, and the new normal is not going to go away anytime soon.
Peeves the cough was just the beginning.
Friday, February 27, 2009
Friday, February 20, 2009
Getting Rid of Peeves
My pulmonologist keeps telling me that Sarcoidosis is tricky. There are people whose lungs are covered in granulomas who have no symptoms at all and there are people like me who have moderate granulomas who are chronically sick and coughing non-stop. I wish I were in the other group.
This past weekend the cough decided to get worse and, just for fun, to start gurgling on my left side and then for kicks, to poke my left ribs and then step on them every once in awhile just to be sure I was paying attention. I've now named it Peeves after the trouble-making ghost in the Harry Potter books. Around Saturday afternoon when I couldn't keep a breath long enough to finish a sentence, I decided the 4 drugs weren't working. Peeves must be stopped.
But I'm stubborn, so I coughed through my daughter's birthday party on Sunday and a couple days of work before I finally called to see if the doctor had any new ideas for this. I'd hoped to just deal with it over the phone, but once I said chest pain, they made me go in.
My pulmonologist does sincerely seem to be trying to help me get better. He is also trying very hard to allay my fears. Every breast cancer patient is told the same thing, any chest or back pain has to be checked out. Throw a chronic cough on top of that and the "c" word sneaks into the survivor's head pretty quickly.
Though he did not think cancer was the problem, he did not like the sound of the cough, either. So, just to be sure of where things are, he sent me off to the hospital for bloodwork and another CT scan.
Lying on the table getting pumped full of iodine and trying desperately not to cough when the machine told me to hold my breath, I was hoping that I'd get done and they'd say all the granulomas were gone, that the cough was a bad case of bronchitis and they just need me to take an antibiotic for a few days....end of Peeves for good!
The granulomas are not gone; that's the bad news. They haven't spread in the past 6 months; that's the good news. I'm not responding to the asthma drugs; bad news. This means the asthma is likely directly caused by the Sarcoid and treating the Sarcoid has to be the next step; ok news. The next step is to try to shrink the granulomas with Prednisone, a steroid; sucky news.
So, now I'm taking the drug that I said from the outset I wanted to avoid and is against all my better judgement. But, I need to stop the cough and chest pain and I don't have anything else that I can try right now. The immuno-suppressants would take months to stop the cough, and I can't even start them while I'm coughing, so those are out. The doctor says we'll try the steroid for just a week to see if there is improvement. If not, then we stop. If there is, he'll have me take it just long enough to get the cough under control and then likely move me to the immuno-suppressants long-term.
And, while I take the steroid, I'm also supposed to take all of the asthma drugs and an antibiotic (apparently there is also a small infection) - 6 drugs now. I'm drinking a lot of Kombucha to try to keep my system slightly less toxic.
In between all of this I'm supposed to be on call for the refugees and take care of my family and the rest of my job. ok. Peeves better get out, and soon.
This past weekend the cough decided to get worse and, just for fun, to start gurgling on my left side and then for kicks, to poke my left ribs and then step on them every once in awhile just to be sure I was paying attention. I've now named it Peeves after the trouble-making ghost in the Harry Potter books. Around Saturday afternoon when I couldn't keep a breath long enough to finish a sentence, I decided the 4 drugs weren't working. Peeves must be stopped.
But I'm stubborn, so I coughed through my daughter's birthday party on Sunday and a couple days of work before I finally called to see if the doctor had any new ideas for this. I'd hoped to just deal with it over the phone, but once I said chest pain, they made me go in.
My pulmonologist does sincerely seem to be trying to help me get better. He is also trying very hard to allay my fears. Every breast cancer patient is told the same thing, any chest or back pain has to be checked out. Throw a chronic cough on top of that and the "c" word sneaks into the survivor's head pretty quickly.
Though he did not think cancer was the problem, he did not like the sound of the cough, either. So, just to be sure of where things are, he sent me off to the hospital for bloodwork and another CT scan.
Lying on the table getting pumped full of iodine and trying desperately not to cough when the machine told me to hold my breath, I was hoping that I'd get done and they'd say all the granulomas were gone, that the cough was a bad case of bronchitis and they just need me to take an antibiotic for a few days....end of Peeves for good!
The granulomas are not gone; that's the bad news. They haven't spread in the past 6 months; that's the good news. I'm not responding to the asthma drugs; bad news. This means the asthma is likely directly caused by the Sarcoid and treating the Sarcoid has to be the next step; ok news. The next step is to try to shrink the granulomas with Prednisone, a steroid; sucky news.
So, now I'm taking the drug that I said from the outset I wanted to avoid and is against all my better judgement. But, I need to stop the cough and chest pain and I don't have anything else that I can try right now. The immuno-suppressants would take months to stop the cough, and I can't even start them while I'm coughing, so those are out. The doctor says we'll try the steroid for just a week to see if there is improvement. If not, then we stop. If there is, he'll have me take it just long enough to get the cough under control and then likely move me to the immuno-suppressants long-term.
And, while I take the steroid, I'm also supposed to take all of the asthma drugs and an antibiotic (apparently there is also a small infection) - 6 drugs now. I'm drinking a lot of Kombucha to try to keep my system slightly less toxic.
In between all of this I'm supposed to be on call for the refugees and take care of my family and the rest of my job. ok. Peeves better get out, and soon.
Wednesday, February 11, 2009
More Meds
The pulmonologist listens, and seems to genuinely get how frustrating it is to be coughing for 4 months straight. Unfortunately, he doesn't seem to have any clear ideas about how to make it stop.
He, like the rheumetologist, is still going on the idea that the asthma came along on its own, separately from the sarcoidosis and the cancer before that. I've told them both how ridiculous this is, but since there is no reasonable treatment for the sarcoid, they keep chasing the cough. Apparently, many people live perfectly healthy and active lives with sarcoidosis. I hope to be one of them someday!
So, this time I left with instructions to remove any and all possible allergens from my house and bedroom and 2 more drugs, one replaces one I'm already taking, the other is new. This brings me up to 4 meds just for the cough, tough creep that it is. I'm thinking of naming it...maybe not.
We're giving it a few more weeks. If I'm not better, then more scans to check the nodules' progress and I'll have to drop all the asthma drugs for a short duration of steroids. The asthma drugs better work.
He, like the rheumetologist, is still going on the idea that the asthma came along on its own, separately from the sarcoidosis and the cancer before that. I've told them both how ridiculous this is, but since there is no reasonable treatment for the sarcoid, they keep chasing the cough. Apparently, many people live perfectly healthy and active lives with sarcoidosis. I hope to be one of them someday!
So, this time I left with instructions to remove any and all possible allergens from my house and bedroom and 2 more drugs, one replaces one I'm already taking, the other is new. This brings me up to 4 meds just for the cough, tough creep that it is. I'm thinking of naming it...maybe not.
We're giving it a few more weeks. If I'm not better, then more scans to check the nodules' progress and I'll have to drop all the asthma drugs for a short duration of steroids. The asthma drugs better work.
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