My surgeon called last night. He said the lab report was very clear in that I have Sarcoidosis.
Now, the good news is that I don't have cancer again. The bad news is that I do have an auto-immune disease for which there is no cure, no one knows how it begins, and that can potentially wreak havoc on my lungs, heart, eyes, nervous system, and any other organs it attacks.
My research so far is sketchy. Nothing can tell me why this disease starts or if there is any one path it takes. It seems to be random and affects each patient differently. According to my surgeon, it can go into remission at any time and can flare up at any time. There is no cure, but they treat symptoms, often with steroids.
OK then.
The next step is to get a referral to a pulmonologist to be staged in the course of the disease and to see what, if any, damage has already been done to my lungs and lymph nodes. I'm also trying to read more and figure out if there are alternative therapies I can try that don't involve steroids. I won't take steroids. I had cancer once, I'm not risking getting it again because I'm trying to treat something else.
Beyond this, I'm just waiting to talk to my oncologist to get a recommendation. And, I'm trying to grasp the why of the fact that, after fighting so hard to get rid of the breast cancer, I now have to fight to manage this, maybe for the rest of my life.
Now I know, this is where anger starts.
Friday, September 26, 2008
Wednesday, September 24, 2008
Still Waiting
Tonight I had a good chat with my Complex Care Nurse at Blue Cross. When I was first assigned to her, I thought the whole thing was kind of stupid, but now, when trying to not get too nuts while waiting for yet another biopsy to come back, I'm finding her to be a good resource.
Right now, I'm waiting to find out whether or not I have Lymphoma and whether or not I have Sarcoidosis. One being cancer and the other being an auto-immune disease, the idea of having either and the treatment options for both boggle the mind. This is where Debra is a help.
Over the weekend I left her a message asking for information on both possible diagnosis and the treatment options for both. Tonight, we talked for 45 minutes or so while she gave me details from the research she did. My own research on the web and on the Mayo Clinic and Web MD sites was OK, but she has access to paid web resources that I don't. So she was able to walk me through more detail. Now, she'll mail me the hard copies of what she found so I can be as informed as possible as I deal with the fallout of the diagnosis...whenever it comes.
My family and close friends have been asking how I'm doing during the wait. I tell them the truth. I'm trying to hang in. Work is busy, and there is nothing like working with refugees to keep one's perspective in life. But at the same time, I find it harder and harder as the days go by to pretend everything is going to be fine. I just don't know that anymore. As Debra said, I went through hell already; it is OK if the current mess makes me crack just a bit.
So maybe that Complex Care Nurse thing is not so stupid after all. She earned her pay with that comment alone tonight.
Waiting for that call....
Right now, I'm waiting to find out whether or not I have Lymphoma and whether or not I have Sarcoidosis. One being cancer and the other being an auto-immune disease, the idea of having either and the treatment options for both boggle the mind. This is where Debra is a help.
Over the weekend I left her a message asking for information on both possible diagnosis and the treatment options for both. Tonight, we talked for 45 minutes or so while she gave me details from the research she did. My own research on the web and on the Mayo Clinic and Web MD sites was OK, but she has access to paid web resources that I don't. So she was able to walk me through more detail. Now, she'll mail me the hard copies of what she found so I can be as informed as possible as I deal with the fallout of the diagnosis...whenever it comes.
My family and close friends have been asking how I'm doing during the wait. I tell them the truth. I'm trying to hang in. Work is busy, and there is nothing like working with refugees to keep one's perspective in life. But at the same time, I find it harder and harder as the days go by to pretend everything is going to be fine. I just don't know that anymore. As Debra said, I went through hell already; it is OK if the current mess makes me crack just a bit.
So maybe that Complex Care Nurse thing is not so stupid after all. She earned her pay with that comment alone tonight.
Waiting for that call....
Friday, September 19, 2008
Biopsy Done Now the Wait Begins
Yesterday was the big biopsy day. After 2 nights of little to no sleep, I figured I had 2 options, be depressed about being back here a year later, waiting to hear about how my health is in jeopardy, or go in with some sass and just deal with each thing as it came. I chose sass, much to my dh's embarassment.
I found that a dose of sass actually works in one's favor at the hospital. Doctors and nurses pay more attention if you say something clearly and with humor, they are more responsive and less stand-offish and I think the patient's day goes better if the folks helping them can connect on more than a duty-only level.
I had a fabulous anesthesiologist. Last year the anesthesiologist said almost nothing to me and he had a heck of a time finding my vein, which led to unnecessary pain and bruising for me. So this year, I'm happy to report I got a guy with a personality and who I was able to tell up front about my skinny arms and veins to give him a heads up. It worked! Despite my being dehydrated from not having anything to eat or drink for 11 hours before surgery and cold because they keep hospitals like ice boxes, he took his time and slowly found a decent place to stick me. Today, no pain in the arm and only a tiny bruise. Hooray for the little things!
As for the big stuff, as in WHAT THE HECK IS GOING ON IN MY CHEST?! I won't know until next week. My surgeon only said that he got good samples, my lymph nodes are very enlarged, and they didn't immediately find cancer cells in the quick look. He also did some additional blood work after the surgery, which I consider adding insult to injury, to run some additional labs that I don't quite understand. All I know is that now I just wait and try to occupy myself until his office calls. The no immediate cancer cells news is encouraging, but since last year I got encouraged by a positive initial report and then crushed when the final pathology came 10 days later, I'm taking a cautious approach and not getting my hopes up.
In the short-term, I'm keeping on the pain pills because I've learned that when they stick a scope down your esophagus it hurts like a son of a gun, and I'm also trying to scrounge up some cute scarves to hide the oh-not-so-lovely bulgy scar thing on my neck. Hey, maybe I can start a new fashion trend!
My friends and family are being really wonderful, calling, bringing food, offering to help with the girls. Thank you all so very much! I'll keep you posted as we learn what's going on. But, whatever it is, this sassy chick will just deal, one thing at a time.
I found that a dose of sass actually works in one's favor at the hospital. Doctors and nurses pay more attention if you say something clearly and with humor, they are more responsive and less stand-offish and I think the patient's day goes better if the folks helping them can connect on more than a duty-only level.
I had a fabulous anesthesiologist. Last year the anesthesiologist said almost nothing to me and he had a heck of a time finding my vein, which led to unnecessary pain and bruising for me. So this year, I'm happy to report I got a guy with a personality and who I was able to tell up front about my skinny arms and veins to give him a heads up. It worked! Despite my being dehydrated from not having anything to eat or drink for 11 hours before surgery and cold because they keep hospitals like ice boxes, he took his time and slowly found a decent place to stick me. Today, no pain in the arm and only a tiny bruise. Hooray for the little things!
As for the big stuff, as in WHAT THE HECK IS GOING ON IN MY CHEST?! I won't know until next week. My surgeon only said that he got good samples, my lymph nodes are very enlarged, and they didn't immediately find cancer cells in the quick look. He also did some additional blood work after the surgery, which I consider adding insult to injury, to run some additional labs that I don't quite understand. All I know is that now I just wait and try to occupy myself until his office calls. The no immediate cancer cells news is encouraging, but since last year I got encouraged by a positive initial report and then crushed when the final pathology came 10 days later, I'm taking a cautious approach and not getting my hopes up.
In the short-term, I'm keeping on the pain pills because I've learned that when they stick a scope down your esophagus it hurts like a son of a gun, and I'm also trying to scrounge up some cute scarves to hide the oh-not-so-lovely bulgy scar thing on my neck. Hey, maybe I can start a new fashion trend!
My friends and family are being really wonderful, calling, bringing food, offering to help with the girls. Thank you all so very much! I'll keep you posted as we learn what's going on. But, whatever it is, this sassy chick will just deal, one thing at a time.
Tuesday, September 16, 2008
Are You Angry?
When my newest round of ridiculousness began, I told my husband I wasn't going to say anything to anyone. It was likely nothing and I didn't want to worry anyone needlessly. After all, every other breast cancer patient I've met has had one or more scary moments since their treatment ended. Most, thankfully, have turned out to be minor or nothing. One survivor told me, "breast cancer is insidious. The chance of it popping up somewhere never goes away completely." Now there's a lovely thought.
As my x-ray turned out to not have a shadow, and the x-ray led to a CT scan that then turned out to show enlarged lymph nodes that no one expected to find, I began getting discouraged. I still didn't want to tell anyone until I met with the surgeon. But God had other plans. This is the only way I can explain the fact that, after a crazy long afternoon the Saturday after my oncologist's second call, I came home to hear my husband tell me that Kathryn, my friend who also had breast cancer last year, was in my living room. This wasn't a planned visit, in fact, we really hadn't talked in a couple of months. But here she was, asking me how things were going post-Tamoxifen. OK, so I'm not supposed to keep this stuff to myself. I get it.
After meeting with the surgeon and confirming the schedule for my surgery this week, there were a few people I had to tell, including my daughters' teachers. My youngest daughter's teacher was especially kind. She asked me the question that, I think, a lot of people would want to ask but don't. In a quiet voice she asked "Are you angry?"
I had to think about it. Last year I managed to stay incredulous about the whole thing through most of the pre and post operation issues. But this time, I can't muster incredulous. But, am I angry? I know I'm ticked off that this is happening again; I know I'm frustrated that years of eating healthy, exercising and not smoking or taking drugs doesn't seem to have done me any good; I'm scared that I'll have cancer again; and, I'm really really tired. But, I don't know if I'm angry. To me, anger is a powerful and dangerous emotion. It clouds judgement and blocks our ability to be rational and to listen to ourselves and others. The are many emotions that jut up against anger, and these I'm familiar with - frustration, ticked off, confused, and desperation are a few. But angry is another level that I don't think I've hit.
Not that I won't, I've learned not to count anything out anymore.
As my x-ray turned out to not have a shadow, and the x-ray led to a CT scan that then turned out to show enlarged lymph nodes that no one expected to find, I began getting discouraged. I still didn't want to tell anyone until I met with the surgeon. But God had other plans. This is the only way I can explain the fact that, after a crazy long afternoon the Saturday after my oncologist's second call, I came home to hear my husband tell me that Kathryn, my friend who also had breast cancer last year, was in my living room. This wasn't a planned visit, in fact, we really hadn't talked in a couple of months. But here she was, asking me how things were going post-Tamoxifen. OK, so I'm not supposed to keep this stuff to myself. I get it.
After meeting with the surgeon and confirming the schedule for my surgery this week, there were a few people I had to tell, including my daughters' teachers. My youngest daughter's teacher was especially kind. She asked me the question that, I think, a lot of people would want to ask but don't. In a quiet voice she asked "Are you angry?"
I had to think about it. Last year I managed to stay incredulous about the whole thing through most of the pre and post operation issues. But this time, I can't muster incredulous. But, am I angry? I know I'm ticked off that this is happening again; I know I'm frustrated that years of eating healthy, exercising and not smoking or taking drugs doesn't seem to have done me any good; I'm scared that I'll have cancer again; and, I'm really really tired. But, I don't know if I'm angry. To me, anger is a powerful and dangerous emotion. It clouds judgement and blocks our ability to be rational and to listen to ourselves and others. The are many emotions that jut up against anger, and these I'm familiar with - frustration, ticked off, confused, and desperation are a few. But angry is another level that I don't think I've hit.
Not that I won't, I've learned not to count anything out anymore.
Monday, September 8, 2008
Your oncologist called
Let me be clear. These are the WORST words a cancer patient can hear. Don't get me wrong, I like my oncologist. He's an irreverent, slightly curmudgeonly guy who tells the truth without any fluff. He's also way into Harley bikes and likes to spend his time off out on the road. He's an interesting guy. He may be the most interesting person I never want to hear from.
At my checkup in August I mentioned I'd been having some nagging pain in a couple of ribs. This was only because he told me to tell him about any pain that lasted more than a couple of days, the classic post-cancer hypochondria. After a couple of questions to be sure I hadn't just cracked a rib rock climbing, he said he wanted me to take a chest x-ray just to be sure everything was fine. As long as it turned up clean, as he expected, he didn't need to see me for another 6 months. Hooray!
Except....a few days later, he called to say that the radiologist noticed a small nodule on my lung. He couldn't really see it, but because the radiologist did, he had to order another test to rule out any problem, so he sent me for a CT scan. Not to worry, it was probably nothing. I looked it up, shadows on the x-ray often looked like nodules, so I was sure it was just that, a shadow.
If you've never had the pleasure of a CT scan, these are commonly called the CAT scan. First, they make you drink Barium, a disgusting chalky drink. Then, they inject you with Iodine and send you through a tube that radiates you to see what's wrong. A delightful hour!
Then, he called again. Apparently there are three very small nodules on my lung. But these are too small to do anything about right now, and really aren't the problem. While looking at the CT films, the radiologist noticed several enlarged lymph nodes under my Sternum and ribs. That is the problem. Before he called me, my oncologist had already reviewed the CT with the radiologist and spoken to his friend, a cardio-thoracic surgeon, whom he wanted me to call asap.
Really, the rest of the conversation was buzzing in my ear by then. I can't believe I'm back here again! My cancer was supposed to be textbook, caught early and I'd be a survivor. I was even looking at reconstruction, how can I be back here again. This place truly sucks; trying to remember to breathe, not sleeping, running scenarios and options in my head....I hate this place.
Unfortunately, the buzzing was actual words. Today I met my new cardio-thoracic surgeon. He's a nice enough guy...surgeony. I think I was clear enough in the appointment that this is ridiculous that I'm back dealing with cancery kinds of stuff and he needs to be sure this doesn't last too long. I have NO time for this!
Except, now I'm having surgery, a Mediastinoscopy, next week, where the surgeon will biopsy as many of the enlarged lymph nodes that he can. He said he'll freeze a few right away and have the lab check them. If they can diagnose the problem right away, he'll stop and then we'll go on to the next phase of this lovely process. Otherwise he'll get as many as he can and send them all off to the lab for full analysis and I'll learn what is going on a few days later.
Options? Clearly, shadow on the x-ray didn't work. My new options? Sarcoidosis (my immune system is attacking my soft tissues), early stage lung cancer, or early stage lymphoma. None are ones I'd choose, but who said I get a choice?
Between now and the surgery, I've got a life to live. Husband, kids, job, house, family, friends. Those are my priorities. Cancer, or whatever it is that is invading my life, has to take a back seat as long as I can keep it there. I'm trying (again) to be realistic. My body is again being invaded by something that shouldn't be there. Do I hate this? Yes. Do I want it to stop and be gone? Yes. Am I going to do everything I can to stop it? Yes. Am I going to beat it? Absolutely. Am I going to let it take over my life? Absolutely Not.
At my checkup in August I mentioned I'd been having some nagging pain in a couple of ribs. This was only because he told me to tell him about any pain that lasted more than a couple of days, the classic post-cancer hypochondria. After a couple of questions to be sure I hadn't just cracked a rib rock climbing, he said he wanted me to take a chest x-ray just to be sure everything was fine. As long as it turned up clean, as he expected, he didn't need to see me for another 6 months. Hooray!
Except....a few days later, he called to say that the radiologist noticed a small nodule on my lung. He couldn't really see it, but because the radiologist did, he had to order another test to rule out any problem, so he sent me for a CT scan. Not to worry, it was probably nothing. I looked it up, shadows on the x-ray often looked like nodules, so I was sure it was just that, a shadow.
If you've never had the pleasure of a CT scan, these are commonly called the CAT scan. First, they make you drink Barium, a disgusting chalky drink. Then, they inject you with Iodine and send you through a tube that radiates you to see what's wrong. A delightful hour!
Then, he called again. Apparently there are three very small nodules on my lung. But these are too small to do anything about right now, and really aren't the problem. While looking at the CT films, the radiologist noticed several enlarged lymph nodes under my Sternum and ribs. That is the problem. Before he called me, my oncologist had already reviewed the CT with the radiologist and spoken to his friend, a cardio-thoracic surgeon, whom he wanted me to call asap.
Really, the rest of the conversation was buzzing in my ear by then. I can't believe I'm back here again! My cancer was supposed to be textbook, caught early and I'd be a survivor. I was even looking at reconstruction, how can I be back here again. This place truly sucks; trying to remember to breathe, not sleeping, running scenarios and options in my head....I hate this place.
Unfortunately, the buzzing was actual words. Today I met my new cardio-thoracic surgeon. He's a nice enough guy...surgeony. I think I was clear enough in the appointment that this is ridiculous that I'm back dealing with cancery kinds of stuff and he needs to be sure this doesn't last too long. I have NO time for this!
Except, now I'm having surgery, a Mediastinoscopy, next week, where the surgeon will biopsy as many of the enlarged lymph nodes that he can. He said he'll freeze a few right away and have the lab check them. If they can diagnose the problem right away, he'll stop and then we'll go on to the next phase of this lovely process. Otherwise he'll get as many as he can and send them all off to the lab for full analysis and I'll learn what is going on a few days later.
Options? Clearly, shadow on the x-ray didn't work. My new options? Sarcoidosis (my immune system is attacking my soft tissues), early stage lung cancer, or early stage lymphoma. None are ones I'd choose, but who said I get a choice?
Between now and the surgery, I've got a life to live. Husband, kids, job, house, family, friends. Those are my priorities. Cancer, or whatever it is that is invading my life, has to take a back seat as long as I can keep it there. I'm trying (again) to be realistic. My body is again being invaded by something that shouldn't be there. Do I hate this? Yes. Do I want it to stop and be gone? Yes. Am I going to do everything I can to stop it? Yes. Am I going to beat it? Absolutely. Am I going to let it take over my life? Absolutely Not.
Subscribe to:
Posts (Atom)
