My rumetologist warned me weeks ago that because the Sarcoidosis is keeping my immune system busy attacking my lungs, that I will get every bug that goes by. One of the things he made me do before I finished my first appointment was to get a flu shot.
Now, I know that the worst place for a sick person is a hospital. But, when one of my little refugee families' babies got the stomach flu that has been going around and ended up in pediatric ICU overnight, I couldn't just leave them at the last minute when they needed help with translating to be sure she would be ok. It was only a few hours at the county hospital, what could it do?
That was Wednesday. Thursday night, I found out. And it was NOT fun.
Now, getting stomach flu is awful. But getting it while the dh is hundreds of miles away and the kids have to be in school the next day is even worse. All I can say is I have the best neighbor and friends around!
One thing I needed to do that day, though, was try to cancel my cardiology check up. No way would I be able to get to the office and sit through a 2-hour appointment. So I called and explained my problem. The receptionist was very nice and said they would not charge me, but they wouldn't be able to reschedule me until January. This would mean having to reschedule my December rumetology appointment and delay getting my lungs treated for even longer. I told her I'd be there. And then I called a friend who picked me up and took me to the appointment. While there, the physician's assistant said, "Wow, you don't look so good." No kidding.
But, I made it through and then the cardiologist decided to finish the tests with a treadmill and ultrasound the next day. It was fine with me, provided I could walk by the next day, but I was stunned. A cardiologist who works on Saturday? I've found the only one in America!
When the test started on Saturday I gave the technician the same speech I give all the techs these days, "OK, now every test I've had for the past couple of years has gone badly. I need you to make sure I pass this one, ok?". She said she'd do her best; and she did a pretty good job.
According to the cardiologist, all the years of regular exercise and vegan diet have finally been good for something! Except for some oxygen issues, my heart is in great shape. Hooray! And she said the few small problems wil be treated when I start treatment on my lungs.
So ok then. A doctor who works Saturday and gives me a good report. Now I just wait for the rumetologist and try to get rid of this flu and stay healthy!
Tuesday, November 25, 2008
Monday, November 17, 2008
More doctor visits means more stuff
The Rumetologist has me chasing all over town to see a bunch of doctors so he can find out how far along the Sarcoidosis is and what organs may or may not be impacted so far.
Last week I spent a couple of hours at the hospital in the Pulmonary Function Lab taking tests to check out my lung capacity. Basically, you sit in a Plexiglas pod and breathe into a tube while a perky lab assistant tells you when to breathe in and out, all the while changing the air pressure! Delightful. No results on this yet. I have to wait until the lab gets everything to my doctor.
Today I saw the opthamologist. Last spring I developed corneal abrasions, which are very painful tiny holes in the cornea. The optometrist who treated me said it was the Tamoxifen that caused the problem. After a couple rounds of antibiotics, it got much better, but my eyes have remained dry and burny most of the time. When I saw the rumetologist, he was skeptical about the earlier diagnosis, so wanted me to see an opthamologist to see if the initial problem and the ongoing discomfort are related to the Sarcoid. The good news on this is that I did not have to wait. He agreed with the rumetologist that the problem wasn't caused by the Tamoxifen, but that because my immune system was messed up from the drug, an infection I probably already had flared up. Turns out, I've had a low grade eye condition called Blepharitis for a long time and didn't know it. Now I just take some antibiotics and do some special treatments on my eyes and it should clear up. So now I know that the Sarcoid is not in my eyes, hooray, and the discomfort I have been trying to ignore can be fixed, double hooray! Maybe going to all these doctors has not been a total slog, at least this one found something that can easily and quickly be fixed.
Now I just hope the cardiologist appointment is this easy!
Last week I spent a couple of hours at the hospital in the Pulmonary Function Lab taking tests to check out my lung capacity. Basically, you sit in a Plexiglas pod and breathe into a tube while a perky lab assistant tells you when to breathe in and out, all the while changing the air pressure! Delightful. No results on this yet. I have to wait until the lab gets everything to my doctor.
Today I saw the opthamologist. Last spring I developed corneal abrasions, which are very painful tiny holes in the cornea. The optometrist who treated me said it was the Tamoxifen that caused the problem. After a couple rounds of antibiotics, it got much better, but my eyes have remained dry and burny most of the time. When I saw the rumetologist, he was skeptical about the earlier diagnosis, so wanted me to see an opthamologist to see if the initial problem and the ongoing discomfort are related to the Sarcoid. The good news on this is that I did not have to wait. He agreed with the rumetologist that the problem wasn't caused by the Tamoxifen, but that because my immune system was messed up from the drug, an infection I probably already had flared up. Turns out, I've had a low grade eye condition called Blepharitis for a long time and didn't know it. Now I just take some antibiotics and do some special treatments on my eyes and it should clear up. So now I know that the Sarcoid is not in my eyes, hooray, and the discomfort I have been trying to ignore can be fixed, double hooray! Maybe going to all these doctors has not been a total slog, at least this one found something that can easily and quickly be fixed.
Now I just hope the cardiologist appointment is this easy!
Monday, November 10, 2008
Perspective
I re-read my last post. Too whiny.
This weekend I got a very big dose of perspective. I had to go visit one of the Bhutanese refugee families to deliver some food and money so the boys would have the right clothes for school. While there, I met with two other families who also recently arrived from Bhutan. There are four families in 3 apartments in the same building. All of them seem to be related in some way, though I can never keep the connections straight....it doesn't help that half the Bhutanese families have the same last name!
All of these families have spent the past 18 years living in a refugee camp in southern Nepal where their food was UN rations and they lived in houses made of plywood and plastic sheeting and newspaper. Now, they live in apartments in San Jose that cost all of their resettlement money each month, so they have no cash left for anything, including bus passes to get to their English and Computer classes, so they pool together to buy one or two and take turns going to class. Those who speak English are applying for every job they can, with little luck because the American economy has tanked since they arrived. The women with young children, who speak no English at all, are isolated and very confused about where they've been sent.
On Sunday, some of the refugees from the house my church sponsors joined us for worship. They have been coming regularly, which has helped the congregation to connect with them at a very personal level, which I hope has been helpful for them as well. During prayer time, for the first time, one of the men stood up and asked for prayer that he learn English quickly so he can find a good job to take care of his wife and children. This man and his family had to flee Burma because, as Christians, they were not allowed to go to school or get jobs and their homes were taken.
Perspective. I have such high hopes for the refugees. They are the ones who have worked the hardest and have risked everything to allow themselves to be sent to an unknown place to try to make a life for themselves and their families. But right now, everything seems to be conspiring against them. The economy is terrible so jobs are few and far between, the housing crisis has resulted in landlords who can ask just about anything for rents and expect to get it, and the local and federal programs that are supposed to help them are continually cut, so there is no safety net.
When I met with the families on Saturday they did what they had to; they told me their problems and asked me for help. As I always try to do, I gave them what I could and now I'm working to find more help for them, but I can't give them the peace of mind they need. That they have to find, somehow, on their own.
What I've learned from the refugees, and try to remember when I'm not being overwhelmed and whiny about my own issues, is that we just have to keep trying. Even when things are impossible, we have to get up every day, pray to our God for strength, and take a step forward because we have nothing in the past to hold on to, only our dreams and goals for a better day tomorrow. And when the opportunity arises, we tell someone our troubles and ask them for help.
Perspective.
This weekend I got a very big dose of perspective. I had to go visit one of the Bhutanese refugee families to deliver some food and money so the boys would have the right clothes for school. While there, I met with two other families who also recently arrived from Bhutan. There are four families in 3 apartments in the same building. All of them seem to be related in some way, though I can never keep the connections straight....it doesn't help that half the Bhutanese families have the same last name!
All of these families have spent the past 18 years living in a refugee camp in southern Nepal where their food was UN rations and they lived in houses made of plywood and plastic sheeting and newspaper. Now, they live in apartments in San Jose that cost all of their resettlement money each month, so they have no cash left for anything, including bus passes to get to their English and Computer classes, so they pool together to buy one or two and take turns going to class. Those who speak English are applying for every job they can, with little luck because the American economy has tanked since they arrived. The women with young children, who speak no English at all, are isolated and very confused about where they've been sent.
On Sunday, some of the refugees from the house my church sponsors joined us for worship. They have been coming regularly, which has helped the congregation to connect with them at a very personal level, which I hope has been helpful for them as well. During prayer time, for the first time, one of the men stood up and asked for prayer that he learn English quickly so he can find a good job to take care of his wife and children. This man and his family had to flee Burma because, as Christians, they were not allowed to go to school or get jobs and their homes were taken.
Perspective. I have such high hopes for the refugees. They are the ones who have worked the hardest and have risked everything to allow themselves to be sent to an unknown place to try to make a life for themselves and their families. But right now, everything seems to be conspiring against them. The economy is terrible so jobs are few and far between, the housing crisis has resulted in landlords who can ask just about anything for rents and expect to get it, and the local and federal programs that are supposed to help them are continually cut, so there is no safety net.
When I met with the families on Saturday they did what they had to; they told me their problems and asked me for help. As I always try to do, I gave them what I could and now I'm working to find more help for them, but I can't give them the peace of mind they need. That they have to find, somehow, on their own.
What I've learned from the refugees, and try to remember when I'm not being overwhelmed and whiny about my own issues, is that we just have to keep trying. Even when things are impossible, we have to get up every day, pray to our God for strength, and take a step forward because we have nothing in the past to hold on to, only our dreams and goals for a better day tomorrow. And when the opportunity arises, we tell someone our troubles and ask them for help.
Perspective.
Wednesday, November 5, 2008
It Is What It Is
Last week my girls' school was out for a couple of days while the teachers attended a conference. This meant a 4-day weekend over Halloween. The girls had a good weekend. My mom came to watch them while I worked and went to doctor appointments, and despite the rain, they had a lot of fun going to the movies, hanging out with Nana, trick or treating, and not going to school. But by Sunday night, they were ready to go to school, if only to see their friends who'd all gone out of town for the break.
Monday morning, the moms were all talking about the coincidence of so many of the school families being in San Diego for the break. Apparently, half the fourth grade was at Legoland on Friday!
And that's when it hit me. Taking off for a long weekend and leaving all the stresses of work and home is not a possibility for us. It's not just work or even the doctor appointments, it's leaving everything behind. Work can be left behind (even by dad!), but rare, ridiculous diseases that have messed up Mom's breathing and energy level? they come with us wherever we go right now, and things will only get worse as the treatment progresses. I was jealous.
The dh and I had tried getting away earlier in September for our anniversary. We'd booked a spa weekend months in advance. Unfortunately, shortly before we left, I got one of the oncologist calls; the one telling me I had to have surgery. We spent the weekend trying very very hard to talk about anything else. So much for relaxing spa weekend.
Today I ran into a couple of the moms who did do the San Diego trip over the long weekend. We talked for awhile about the trips, and they asked me about the progress with the doctors, during the conversation I told them about my strange reaction to their fun. I didn't tell them to make them feel bad, but I guess I'm just trying to be more honest with myself about where my life and my family's life is right now. I'm afraid I am very inelegant and awkward in dealing with these things still. I hope to get better at it. I think.
Right now, and for the foreseeable future, getting away from everything is not an option. That's just not the season we're in right now. Someday we'll get back to a time when we can leave everything behind and just have fun. But not now.
It is what it is.
Monday morning, the moms were all talking about the coincidence of so many of the school families being in San Diego for the break. Apparently, half the fourth grade was at Legoland on Friday!
And that's when it hit me. Taking off for a long weekend and leaving all the stresses of work and home is not a possibility for us. It's not just work or even the doctor appointments, it's leaving everything behind. Work can be left behind (even by dad!), but rare, ridiculous diseases that have messed up Mom's breathing and energy level? they come with us wherever we go right now, and things will only get worse as the treatment progresses. I was jealous.
The dh and I had tried getting away earlier in September for our anniversary. We'd booked a spa weekend months in advance. Unfortunately, shortly before we left, I got one of the oncologist calls; the one telling me I had to have surgery. We spent the weekend trying very very hard to talk about anything else. So much for relaxing spa weekend.
Today I ran into a couple of the moms who did do the San Diego trip over the long weekend. We talked for awhile about the trips, and they asked me about the progress with the doctors, during the conversation I told them about my strange reaction to their fun. I didn't tell them to make them feel bad, but I guess I'm just trying to be more honest with myself about where my life and my family's life is right now. I'm afraid I am very inelegant and awkward in dealing with these things still. I hope to get better at it. I think.
Right now, and for the foreseeable future, getting away from everything is not an option. That's just not the season we're in right now. Someday we'll get back to a time when we can leave everything behind and just have fun. But not now.
It is what it is.
Saturday, November 1, 2008
Another Doctor and More to Come
This week I finally had my appointment with the rumatologist to talk about the Sarcoidosis diagnosis and to learn more about what it means and what my prognosis looks like.
The morning was not what I'd call fun, but it was helpful and informative for a first visit, once he realized why I was there! The appointment began with him asking me to list every doctor I currently have. To me, the funniest one is that he, like all the specialists, want to know who my primary care doctor is. While I do have one, I've seen her exactly twice in the past year since I signed on with her. And until I got breast cancer, I didn't really have a primary care. I just went to the ob/gyn once a year. Boy do I miss those days!
Anyway, back to the appointment this week. At the end of my list of doctors, I mentioned the cardio-thoracic surgeon..."Why do you have a cardio-thoracic surgeon?" "He did the Mediastinoscopy." "Why did you have that done?" "Excuse me, but that's why I'm here; Sarcoidosis." Long pause while he looks at all of the paperwork my oncologist faxed over.... "Oh, that changes everything." More pause while he reads. "And when were you diagnosed with breast cancer?" "August 2007" "Wow, you've had a really bad year."
You think?!
After my husband and I exchanged incredulous glances at how this was going SO badly, he read for a bit longer then started pulling out referral forms and asking many more detailed questions and taking tons of notes. After awhile he stopped and apologized for not reading the chart fully at first. He said he does get a number of breast cancer patients because they experience nerve and muscle pain after their treatment. Clearly, this is not that.
Most of the appointment was taking history, discussing the current symptoms with my lungs (shortness of breath, pain, fatigue) and things he wants to look at before starting any treatment. This means tons of blood work (10 vials!!), a visit to the pulmonary lab at the local hospital, and consults with a cardiologist to see if the Sarcoidosis has done any damage to my heart yet, and a visit to see an opthamologist to see if the eye problems that started while I was on Tamoxifen and have not gone away are actually from the Sarcoidosis invading my eyes. More doctors.
After I'm done with all of this, then I go back to him, at which point he'll stage me in the course of the disease, refer me to a pulmonologist to have my lungs treated directly (he wants all the data in before he refers me), and we'll likely start treatment. But, the good news is that he doesn't use steroids if at all possible. He said he generally uses immunity-suppressing drugs, which have shown some good results with Sarcoidosis, even remission after a couple of years (hope hope!). These drugs have their own challenges, most specifically that my immune system will be worthless, so I'll probably get sick a lot, and they can damage the liver, so I'll have to have tests for that every couple of months. But, the risks with these are far less than with steroids, and they treat the problem (overactive immune system) rather than just symptoms.
There is a little more fallout, in that reconstruction from the breast cancer surgery will have to wait. No surgery until I can get the Sarcoid in remission, since I can't have any operations while on the immunosuppressants. So I guess I waited too long. Right now repairing the lungs has to come before new boobs.
I keep looking for a bright side in all of this, and while it is small, I am grateful for that naggy rib and that Dr. Cohen took me seriously enough to order the chest x-ray. Without that, I could have gone for years with random symptoms and increasing discomfort before this would have been diagnosed. At least now I can start treatment before things get too far along and I can no longer manage my job and other responsibilities because of the pain and other symptoms.
And next steps? I've started making the appointments for the new doctors, and these will continue through November. I see the rumatologist again in early December. Until then, I just keep going and hope that I can continue to manage the symptoms until we can start the drug therapy.
The morning was not what I'd call fun, but it was helpful and informative for a first visit, once he realized why I was there! The appointment began with him asking me to list every doctor I currently have. To me, the funniest one is that he, like all the specialists, want to know who my primary care doctor is. While I do have one, I've seen her exactly twice in the past year since I signed on with her. And until I got breast cancer, I didn't really have a primary care. I just went to the ob/gyn once a year. Boy do I miss those days!
Anyway, back to the appointment this week. At the end of my list of doctors, I mentioned the cardio-thoracic surgeon..."Why do you have a cardio-thoracic surgeon?" "He did the Mediastinoscopy." "Why did you have that done?" "Excuse me, but that's why I'm here; Sarcoidosis." Long pause while he looks at all of the paperwork my oncologist faxed over.... "Oh, that changes everything." More pause while he reads. "And when were you diagnosed with breast cancer?" "August 2007" "Wow, you've had a really bad year."
You think?!
After my husband and I exchanged incredulous glances at how this was going SO badly, he read for a bit longer then started pulling out referral forms and asking many more detailed questions and taking tons of notes. After awhile he stopped and apologized for not reading the chart fully at first. He said he does get a number of breast cancer patients because they experience nerve and muscle pain after their treatment. Clearly, this is not that.
Most of the appointment was taking history, discussing the current symptoms with my lungs (shortness of breath, pain, fatigue) and things he wants to look at before starting any treatment. This means tons of blood work (10 vials!!), a visit to the pulmonary lab at the local hospital, and consults with a cardiologist to see if the Sarcoidosis has done any damage to my heart yet, and a visit to see an opthamologist to see if the eye problems that started while I was on Tamoxifen and have not gone away are actually from the Sarcoidosis invading my eyes. More doctors.
After I'm done with all of this, then I go back to him, at which point he'll stage me in the course of the disease, refer me to a pulmonologist to have my lungs treated directly (he wants all the data in before he refers me), and we'll likely start treatment. But, the good news is that he doesn't use steroids if at all possible. He said he generally uses immunity-suppressing drugs, which have shown some good results with Sarcoidosis, even remission after a couple of years (hope hope!). These drugs have their own challenges, most specifically that my immune system will be worthless, so I'll probably get sick a lot, and they can damage the liver, so I'll have to have tests for that every couple of months. But, the risks with these are far less than with steroids, and they treat the problem (overactive immune system) rather than just symptoms.
There is a little more fallout, in that reconstruction from the breast cancer surgery will have to wait. No surgery until I can get the Sarcoid in remission, since I can't have any operations while on the immunosuppressants. So I guess I waited too long. Right now repairing the lungs has to come before new boobs.
I keep looking for a bright side in all of this, and while it is small, I am grateful for that naggy rib and that Dr. Cohen took me seriously enough to order the chest x-ray. Without that, I could have gone for years with random symptoms and increasing discomfort before this would have been diagnosed. At least now I can start treatment before things get too far along and I can no longer manage my job and other responsibilities because of the pain and other symptoms.
And next steps? I've started making the appointments for the new doctors, and these will continue through November. I see the rumatologist again in early December. Until then, I just keep going and hope that I can continue to manage the symptoms until we can start the drug therapy.
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