Yet another new plan

So my doctors' new plan, worked out by the rheumetologist, pulmonologist and the oncologist (geez I have too many doctors poking at me!) is this - hit the sarcoid hard with prednisone, high doses for a week each, tapering down to a medium dose for 3-4 months. Then, to get me off the prednisone, move me onto a tnf drug for 12-18 months and THEN I'll be in remission. They say. All I have to do is try to breathe, sleep and not become a raving lunatic in the next few months.

Day Off and Doctors?

My very sweet friend asked me to blog so she wouldn't have to call and grill me, so here goes...

I took the day off today because I thought I'd spend a lovely day seeing both the rheumetologist and the pulmonologist in one day. I'm just a glutton for punishment...

For the past 4 months or so I've been my rheumetologist's guinea pig. I did not do well on Prednisone last Spring so we decided to try some other options. The first trial was Methotrexate, a very old chemo drug that used to be the standard drug for breast cancer (of course). 2 months on this resulted in a lot less hair but no improvement. So, I was moved to Arava, another lovely chemo drug that resulted in nose sores and nose bleeds, stomach issues and a 13 pound drop in my weight in 2 months, but as of today, the pain is worse, the voice is worse, and the breathing is much worse, so clearly not the cure-all I was hoping for. I'm supposed to stop the Arava immediately.

After several hours with my team, the plan now is to do yet another Pulmonary Function Test. My last one in June showed me at 70% of capacity. My pulmonologist at first told me that in his experience this is not bad, but then laughed and took it back when I pointed out that he is a pulmonologist and only sees people with terrible lungs. Seriously?! So he wants a new PFT to see where I am at this point. I'm worried. In July I walked 39 miles in the Avon Walk. Last Saturday I had to sit down and rest after walking 3 miles on my treadmill, going up the stairs at work makes me wheeze, and I have to continually restart conversations because the not breathing makes me forget what I was saying.

Depending on what the PFT shows I'll either start another round of high doses of Prednisone, which I cringe at, or I'll have to go back to the cardiologist because the Pulmonologist says the Sarcoid may have moved to my heart, which would explain the exhaustion and problems breathing, which I cringe at more and am currently ignoring. I know they are right. The Rheumetologist was considering having me do Humira injections, but he is really worried about the cancer recurrence risks and nothing shows that Humira really works for pulmonary Sarcoid. Apparently the only thing that works well is high doses of Prednisone over a period of 4 months or so.

That is where I get scared. My Pulmonologist has promised me stronger sleeping pills while I'm on the steroids, but I also hate the weight gain, moon face, cuts and bruises and manic mood swings. My dh worries so much when I'm on this stuff, but we both want me better, so I guess we'll do what has to be done.

My next day off will not include visits to ANY doctors!

I like my oncologist

Today was my 6-month oncologist check-up. I expect the nightmare I had last night and the rock in my stomach all morning can be explained easily because my last August appointment with the oncologist resulted badly. I went in with a naggy rib pain and ended up with sarcoidosis.

Today, happily, was an uneventful appointment. He says the cancer is least of my worries right now and he is more concerned about the sarcoid treatment.

We talked about the chemo drug and why my doctors chose this. He agreed with their choice, but said that if it doesn't work, and they need to try something else, that one of the immuno-suppressant drugs might be a good choice. He has a patient on it and he feels the recurrence risk is manageable. So, "if they have to" there is another choice. I actually find this a hopeful option! While I want the current treatment to work, I've been worried that if it doesn't I'll have to go back on the high-dose steroids as my only other option.

My oncologist thinks sarcoid might be worse than cancer in some ways. He says that, while it doesn't have the mortality risks of cancer, the lack of treatment is a huge problem. He said that no one really knows why sarcoid or cancer appear, but at least with most cancers, they know what to do to treat them, "sarcoid is all guesswork".

I go back in 6 months. He promised me that during that time he will be my most sympathetic, but least important, doctor. I'm planning for him to hold that role for many many years to come!

Pondering the value of drug options

I'm not a good candidate for many of the drugs that are now used to treat sarcoidosis because of the recent breast cancer, and there are no FDA-approved drugs for Sarcoid. The Prednisone makes me miserable at high doses, and they can't give me any more of the inhaled steroids. But, the symptoms are not getting better and some are slowly getting worse.

So, today I met with my rheumetologist again. He spoke to my pulmonologist last week, again, and together they had already decided that my best next option is Methotrexate, a low-dose chemo drug with a chaser of prescription-strength folic acid to help counter some of the side effects.

The problem is that I talk at length with my doctor, and I think I understand what the options are and what the side effects are and what the benefit will be; then, I go home and look it up. After reading entries from the NIH and Medline and Cancer treatment sites, I'm now scared and am wondering if I just shouldn't resolve myself to living with the symptoms and disease I have rather than taking something that may make me even more tired, more sick and more miserable! After reading through these sites and all of the warnings, I'm starting to think that stabbing chest pain and pressure, shortness of breath, wheezing and a chronic hoarse voice may not be so bad after all!

This is like the drug ads on TV. Everything sounds great until they start reading the disclaimers and I begin to wonder why anyone would take any drug at all! The cures always sound worse than the disease they are supposed to treat.

I took the prescriptions to the pharmacy, and I'll likely pick them up, but taking that first dose may take some time.

Avon Walk Again!

This is it! Saturday and Sunday we walk 39 miles to show just how much we hate breast cancer...or something like that! Someone asked me why I do this and how I can push muself to walk 39 miles in 2 days. My response was to simply explain that cancer is not for wimps and so I am showing the cancer that I'm not a wimp and that I have no intention of letting it or the sarcoidosis run my life.

I'm walking for the women who can't; I'm walking so my daughters won't have to sit in their doctor's office someday and be told they have breast cancer; I'm walking so someone can find a cure so other women won't have to have their breasts cut off; and I'm walking because I need to prove to myself that the cancer and sarcoid don't define who I am.

Melissa Etheridge wrote a wonderful song for survivors, "I Run for Life". I walk for all the same things.

Training Crunch Time!

Carole and I are furiously training now for the Avon Walk. Only 3 weeks to go! We've done a couple of 11-mile walks and this week are taking advantage of a Vacation Bible School class for our kids to hit the gym and get in 5 miles on the treadmills.

I think this is going to be a fun event. I'm definitely slowed down since last year, but Carole is really great, so we are helping each other keep up a good pace. I am absolutely looking forward to walking with the fabulous San Jose Bicycle Police as our escorts, they are so cute and so fun!

If you would like to donate, because as Carole says, "blisters suck, but breast cancer is worse!" and I'd follow that with blisters hurt for a short time, but breast cancer sucks forever, please click on either of our links on the left. We are both still fundraising!

I don't get it

Last year I wrote about a young woman I met who'd sent me a quilt with lots of pink ribbons on it. I didn't really appreciate the quilt until we talked and she explained that three years before she'd been diagnosed with DCIS at 32 and how she saw power in the ribbon. After the DCIS she went on to have a beautiful baby girl and she felt like her life was hers again.

Yesterday she was diagnosed with Thyroid Cancer.

I don't get it. I just don't.

Trickier to treat

Yesterday I met with my rheumetologist again. We went over the treatment options he and the pulmonologist discussed last month one more time. He explained again that my recent cancer makes me a poor candidate for the immuno-suppressant drugs he'd prefer to use to get the sarcoid under control.

I thought I was doing ok. The new inhaled steroid with the prednisone seemed to me to be ok. The cough is back, but not terrible. My chest hurts and I'm out of breath a lot, but I told him I can live with this. Unfortunately, the doctor doesn't think it is a static issue. I'll continue to get worse if we can't get the sarcoid under full control, so we need to try something else.

My options are to increase the Prednisone again or to try a low-dose chemo drug. I won't do the Prednisone; the side effects are just not worth it. I already have to have another bone density check to be sure the Prednisone didn't give me osteoporosis! So, on to chemo. The drug he wants me to try has fewer side effects than the immuno-suppressants, in that my cancer recurrence risk won't go up, but I do have to have blood tests every 2 months to be sure my liver is not being damaged.

I've done a little reading on the new drug, and I'm hoping it goes well. The results, when it does go well, can be very good.

Right now, I'm tired of having so many doctors and I'm tired of so many tests and so many people telling me I'm sick. I just want to get to the point where I can put all of this behind me.

The rheumetologist and I talked for a long time about everything; symptoms, work (he is surprised I'm still working full time, as if this was a choice!), kids, and cancer. He summed it up with, "breast cancer and sarcoid back to back, to put it colloquially, this just sucks."

I think he summed it up very well.

Don't Get Sarcoid After Cancer

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!

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.

Poor Options

Last Monday was a good day at the doctor. Last Tuesday seemed to be my reality wake up call.

Tuesday I saw the rheumetologist. That appoinment was a little less encouraging. The good news is my doctors do talk to each other. In fact, they talked while I sat in the office so they could confer on how to proceed next. Basically, I have 2 treatment options, the prednisone, which I need to get off of as soon as possible so I don't destroy my body, and immuno-suppressants, which have thier own nasty side effects (pneumonia, recurring infections, etc). The plan as of Monday was to start drawing me down off the prednisone. That I knew. But now they have decided that, if the sarcoid kicks up again, then they'll stick me immediately on the immuno-suppressants with the prednisone and then draw down the prednisone faster than planned.

If this happens, then I have to do 2-3 hour infusions of immuno-suppressant in the rheumetologist's office every 4-6 weeks for at least a year, plus take an anti-rejection drug for the immuno-suppressant, plus all of the asthma drugs.

The pulmonologist believes the immuno-suppressants are evil and the rheumetologist believes that prednisone is evil (the pulmonologist also believes it is evil, but effective). Hearing from both of them about all the problems with the only drugs that have shown any success at all with Sarcoid was just a little discouraging, especially after I thought things were looking up!

On the up side, there is a small chance (the rheumetologists' words, not mine), that I'll be ok drawing down the prednisone and I won't need the immuno-suppressants for awhile. At least I should be good for the next 3 weeks, I don't think dropping the 5mg will do much, though after spending my Sunday coughing all day, I'm not feeling all that encouraged.

Appointment, but no labs!

I've been getting paranoid about seeing my pulmonologist. 4 weeks ago, I ended up with blood work and a CT scan. 2 weeks ago it was more blood work and ultrasounds of my legs. Today, I was a little worried going in!

But, he explained a lot today. Sarcoidosis is such a systemic disease that it can turn up just about anywhere in the body. and, the more it spreads, the more problems it can cause or even just mimic. So, as a critical care doctor, he tends to start with the worst case scenario, and back down from there. Last week, I showed up in his office with a swollen and bruised leg. He went to blood clot. After we ruled that out, he was able to talk with me today about the various skin and bruising symptoms I should not be surprised to see in the future. At least now I won't be scared when I find random bruises and rashes on my legs, though I will be sure my doctor knows about them. Just in case.

Today's appointment was more about getting me caught up on Sarcoid and what I'm dealing with in terms of treatment and long-term prognosis.

First, the steroids. I'm stuck with them for longer than I would have liked. But, we are stepping down, very slowly. My only question was, if we can take 5mg off, does that mean I can sleep for 30 minutes more a night?

Next, the symptoms. Yes, the symptoms may get weirder. And yes, every time they get weirder, he'll run more tests (see above).

Finally, the prognosis. According to my doctor, who is really all I have to go on right now since the literature on this stupid disease is so thin, the challenge for a good long-term prognosis is to figure out what is the minimum number of drugs that I can take to control the Sarcoid. His opinion is that people get into trouble with secondary infections when their doctors keep them on too many steroids for too long, or put them on immuno-suppressants too early. So, my challenge and his, is to figure out what combination of drugs, with lower doses of steroids, I can take until I can get off the steroids entirely and not mess up my lungs permanently in the process.

I don't see the Pulmonologist again for 3 weeks. This, in my world, is a LONG time. I do see the rheumetologist tomorrow, though the pulmonologist told me to not let him put me on any immuno-suppressants just yet (definitely not yet). After that, my only goal is to get control of the steroids so I can sleep more than 5 hours a night and not be quite so crazy. It will be nice a 3 weeks with no doctor appointments!

More tests, more symptoms, more randomness

I was reminded this week that Sarcoidosis is a systemic disease. I've been so focused on the lung issues, it hadn't really occured to me that anything else would be involved. Wrong there!

Sunday night I found a huge bruise and red rash on my leg. This was large enough and bruised enough that even I, in my craziest of days, should have noticed getting it. I was a little concerned, but since I had a doctor appointment the next day, I decided to just let it go and ask then. Turns out, with Sarcoid, this can happen. However, and there always has to be a however these days! The doctor wanted to run some tests to be sure it wasn't a blood clot forming in my leg. great.

So, more trips to the hospital, more time off work, more labs. After two days of tests, I got the very good news that it is not a blood clot. And it was good news for sure. But, then I thought about it. What it does mean is that my immune system is now going haywire in other places besides my lungs. I'll now start getting random rashes and bruises on my legs, and I'm sure have to have more tests in the future. Man, just when the steroids were getting my lungs better!

I talked with a friend this week who is a 3-time cancer survivor. She had to have a PET scan last week that she was first told was fine, but then got the second call from her doctor with the news that no, it wasn't clear, that some of her lymph nodes are lighting up (this usually means cancer activity). This woman is an amazing woman of faith and courage and grit. She tells it like it is, trusts God through all of it, but doesn't pull any punches. When we talked the other day, she was shaken. She'd just been feeling like she was getting past the cancer bit, and now found out she has to do it again, for the 4th time. I told her swearing is sometimes completely the right response!!

We talked again yesterday. She's met with her surgeon, who is working with her and her onco on a plan. She knows more what they are testing, and they are doing it in a way that will require minimal down time for the biopsy (always a good thing when you are trying to keep a job and fight health issues at the same time). She has turned it all over to God, with the request that He have just a little less faith in her ability to handle all things.

What we laughed most about, though, is that, when it feels like your body is just trying to undermine your life all the time, all you want to do is stop the nonsense. You know you'll beat it, whatever it is. You know you can take the treatments and the tests and the crud that goes with it. But, it's just having to do it. Having to set aside work and kids and husbands and friends to go to the doctor or the hospital and deal with this imperfect shell all the time. It's seeing your doctors more than your girlfriends. It's having a datebook filled in with appointments for tests and calling the insurance company and get getting a world-class education in reading medical statements....Enough!!!

My friend has decided to laugh at the randomness and stupidity of it all, even as she faces her 9th procedure in 9 years. She's my hero.

When I got home from talking with her there was a message from my surgeon saying I need to come in for a checkup. Of course.

Another "New Normal"

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.

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.

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.

The Sarcoid/Asthma Conundrum

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.

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?

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.