I saw the pulmonologist on the 23rd and he confirmed that it is definitely Sarcoidosis. He said he sees a lot of instances where the blood work doesn't match up with the biopsy, but that because Sarcoid is so rare, every time the medical professionals think they've found a definitive blood test, it is wrong for a group of patients. The way he explained it is that there is a blood test (ANA) that confirms Lupus and since Sarcoidosis is in the same family as Lupus, doctors expect a blood test that will also confirm it. There isn't one. The confirming test is the mediastinoscopy surgery that I had in September that showed the granulomas in the lymph nodes and on the lungs.
So, at least now, I'm more confident of what I'm up against. He also said that what has happened is the Sarcoid has caused me to get asthma, which explains the coughing and trouble breathing. He double-checked my blood oxygen and heart rate and said I can definitely keep exercising, but I will just need to slow down for a bit when the breathing trouble starts.
I'm now on asthma medication to see if the cough and breathing will get better. He said the challenge is that in my case, the asthma is caused by the pressure on my lungs from the nodules and swollen lymph nodes, which causes more inflammation and pressure in my lungs, so they have to find something that can treat both problems. Right now we are trying Singulair. So far it doesn't seem to be helping, but it's only been a week.
As for the future, I don't know. Because Sarcoid is like Lupus, it is hard to predict. Right now I'm having a small flare up, which means life is uncomfortable, but still manageable. In the future I could go into remission and have no symptoms, or I could have a major flare up that will make life very difficult to manage. I vote for the remission, but I don't seem to have much say in the matter just yet.
Now that I am getting a better sense of what is going on and what it can do to me, I'm going to try to find out what I can do to get things under better control. For most illnesses, the goal is to boost the immune system so that the body functions more effectively. The problem here is that boosting my immune system can make the flare up worse, since the problem is my immune system is already busy attacking germs that aren't there. I'm still having a hard time getting my mind around that!
What the pulmonologist did say is that exercise is a big help in keeping the asthma in check and helping me to feel better, so that definitely stays! The next step may be to figure out how to lessen the inflammation in my lymph nodes and lungs so the pressure on my chest will go down and maybe that will also help. Here, I'm open to suggestions. An inflamed ankle, I understand, inflamed lungs and lymph nodes seems a lot trickier to deal with.
Tuesday, December 30, 2008
Monday, December 15, 2008
On hold, again
This morning I saw the rheumetologist again. This was supposed to be the appointment where all the tests I've had done at all the various labs and doctors gave us a firm path for treatment.
It didn't happen that way.
While there seem to be some positives, the fact that I keep getting sick is not helping anything. They can't put me on immunosuppressents while my immune system is down from being sick because I'd just get sicker, but I can't take any supplements or vitamins to really beef up my immune system because that could trigger the Sarcoidosis to start attacking my soft tissues.
So, now I have to go to the Pulmonologist to have him check out my CT scan and test results to see what, if anything, he can do to help deal with the chronic cough and shortness of breath. While I do that, the rheumetologist is asking for more results from the surgery to check on some additional tests that should have been done. Then, I go back to see him in 5 weeks.
When I was diagnosed with cancer, it felt like everything happened in warp speed. All the doctors had an urgency and they wanted to start treatment right away. I get that, cancer carries a serious prognosis.
Now, with the auto-immune disease, it feels like just getting to the point of understanding what is happening is taking forever. I understand that auto-immune disease carries a far less dramatic consequence than the cancer did, but it also means months of waiting to feel better that carries with it its own frustration and fear.
Today the doctor asked me if I had any questions. My first question was how and why did I get Sarcoidosos. Answer: I don't know. My second question was is there a relationship between the cancer last year and the auto-immune disease this year. Answer: No, just bad luck.
OK then.
It didn't happen that way.
While there seem to be some positives, the fact that I keep getting sick is not helping anything. They can't put me on immunosuppressents while my immune system is down from being sick because I'd just get sicker, but I can't take any supplements or vitamins to really beef up my immune system because that could trigger the Sarcoidosis to start attacking my soft tissues.
So, now I have to go to the Pulmonologist to have him check out my CT scan and test results to see what, if anything, he can do to help deal with the chronic cough and shortness of breath. While I do that, the rheumetologist is asking for more results from the surgery to check on some additional tests that should have been done. Then, I go back to see him in 5 weeks.
When I was diagnosed with cancer, it felt like everything happened in warp speed. All the doctors had an urgency and they wanted to start treatment right away. I get that, cancer carries a serious prognosis.
Now, with the auto-immune disease, it feels like just getting to the point of understanding what is happening is taking forever. I understand that auto-immune disease carries a far less dramatic consequence than the cancer did, but it also means months of waiting to feel better that carries with it its own frustration and fear.
Today the doctor asked me if I had any questions. My first question was how and why did I get Sarcoidosos. Answer: I don't know. My second question was is there a relationship between the cancer last year and the auto-immune disease this year. Answer: No, just bad luck.
OK then.
Tuesday, November 25, 2008
Cardiologists, the flu and American healthcare
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!
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!
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.
Sunday, October 26, 2008
Marathon Day
Today was the Silicon Valley Marathon. My friend, Don, ran in it. He's done this for several years. He also runs in San Francisco and trains with a local running club. Actually, if you ask him, he plods and walks more than runs, but he sets himself a goal to finish each one, and he does.
This year while I trained for the Avon Walk, I ran into Don on one of the local running trails used by his club. Later, we talked about my walking and how much I enjoyed it and about my times. For a walker, I tend to be pretty quick. My ridiculously long legs actually do me some good here!
Just before the Avon Walk, Don suggested I think about walking the Silicon Valley Marathon. Now, I've never done a marathon and never considered the possibility that I could. But, after the Avon walk, when 39 miles was not difficult, and even in the training phase, when I walked 10, 12, and 14 miles on a Saturday while keeping up my 3-mile daily walks, the idea suddenly seemed plausible. If I could walk 26 miles on a Saturday and then another 13 the next morning with no problems, why couldn't I walk 26 with no second day walk to deal with?
So that became the plan. After the Avon Walk, I didn't give up the training, I just kept going, and started looking at registering to walk the marathon. Don was very sweet, catching me before or after church to ask how the training was going and to tell me about his marathon experiences. To backtrack a bit, the Silicon Valley Marathon does allow walkers; they start an hour earlier. This marathon is not one that the elite runners compete in, it is more a community marathon for people like Don who train regularly and work hard, but are in it more for the endurance than the speed. The perfect first marathon for me.
And everything went well, until my chest x-ray came back with the non-shadow. All through the x-ray and the CT scan and right up until the surgery, I just kept thinking that this was a setback, but I'd still be able to get ready for the marathon. I had come to see doing this as a way for me to prove to myself that despite the cancer, I was still strong and able to push myself to do something new and exciting.
After the surgery, I realized the marathon wasn't going to happen. The recovery took too long and because of the nature of Sarcoidosis, I'm not stronger after the surgery recovery; I just keep getting slowly worse. My chest is heavier, the pain is more prevalent, my breathing gets worse each week, and the cough has started. My 3-mile walks are a challenge some days, so I'm quite certain 26 is out of the question right now.
That said, I'm not giving up on the idea. Yesterday I met a neighbor whom I haven't talked to in a few weeks. She asked how things were going with the Sarcoid and I told her what I know right now. After hearing me she paused a moment and said very succinctly that 2009 just has better be a much better year for my family and me. I agree. So next year, at the 2009 Silicon Valley Marathon, my poor husband will be getting up early to get me there at 6am to start my walk. And at the end, I'll be the happiest of all the finishers.
This year while I trained for the Avon Walk, I ran into Don on one of the local running trails used by his club. Later, we talked about my walking and how much I enjoyed it and about my times. For a walker, I tend to be pretty quick. My ridiculously long legs actually do me some good here!
Just before the Avon Walk, Don suggested I think about walking the Silicon Valley Marathon. Now, I've never done a marathon and never considered the possibility that I could. But, after the Avon walk, when 39 miles was not difficult, and even in the training phase, when I walked 10, 12, and 14 miles on a Saturday while keeping up my 3-mile daily walks, the idea suddenly seemed plausible. If I could walk 26 miles on a Saturday and then another 13 the next morning with no problems, why couldn't I walk 26 with no second day walk to deal with?
So that became the plan. After the Avon Walk, I didn't give up the training, I just kept going, and started looking at registering to walk the marathon. Don was very sweet, catching me before or after church to ask how the training was going and to tell me about his marathon experiences. To backtrack a bit, the Silicon Valley Marathon does allow walkers; they start an hour earlier. This marathon is not one that the elite runners compete in, it is more a community marathon for people like Don who train regularly and work hard, but are in it more for the endurance than the speed. The perfect first marathon for me.
And everything went well, until my chest x-ray came back with the non-shadow. All through the x-ray and the CT scan and right up until the surgery, I just kept thinking that this was a setback, but I'd still be able to get ready for the marathon. I had come to see doing this as a way for me to prove to myself that despite the cancer, I was still strong and able to push myself to do something new and exciting.
After the surgery, I realized the marathon wasn't going to happen. The recovery took too long and because of the nature of Sarcoidosis, I'm not stronger after the surgery recovery; I just keep getting slowly worse. My chest is heavier, the pain is more prevalent, my breathing gets worse each week, and the cough has started. My 3-mile walks are a challenge some days, so I'm quite certain 26 is out of the question right now.
That said, I'm not giving up on the idea. Yesterday I met a neighbor whom I haven't talked to in a few weeks. She asked how things were going with the Sarcoid and I told her what I know right now. After hearing me she paused a moment and said very succinctly that 2009 just has better be a much better year for my family and me. I agree. So next year, at the 2009 Silicon Valley Marathon, my poor husband will be getting up early to get me there at 6am to start my walk. And at the end, I'll be the happiest of all the finishers.
Friday, October 10, 2008
The chicken or the disease?
Tonight is the date for one of the annual fundraiser events for my girls' school. It is a fun event, with a great dinner, jump houses for the kids, and time to see friends outside of the daily drop-off and pick-up rush. Or so I recall.
We didn't make it last year, I was still recovering from surgery and wasn't up to a night of socializing. And we didn't go this year, either.
I spent today at the zoo chaperoning my first grader's class after spending a week in and out of the doctor's office trying to figure out how I ended up with two separate infections in the course of a few days. I'm not up to socializing tonight, and knew I wouldn't be.
But, a friend asked me today if we were going. I told her we were not planning on it and why. Later, she said it was funny that being diagnosed with something suddenly makes the symptoms seem real.
Maybe she's right. Last year, I was healthy right up to the moment the doctor told me I had cancer. And this year, I was on my way back, ready to get on with my life and to put the cancer behind me, right up to the point I was told I had to have surgery again, and then again when I was told I have an incurable auto-immune disease.
Last year, the breast cancer diagnosis made me start questioning all of my choices in life to see what I'd done to cause the cancer. Later, I realized this is a futile and destructive path to go down, so I stopped. But then, the breast cancer did make me sick, or rather, the cure, in the form of surgery and Tamoxifen, made me feel like a sick person.
This year, I am questioning every illness and syndrome and diagnosis I've ever had to try to figure out if it was or is the Sarcoidosis causing it. This week, my doctor said that the second infection was probably a result of my immune system fighting the first infection, so some of the bacteria moved along. So now I wonder, was the first infection a result of my immune system being too busy attacking my lungs and lymph nodes to notice bacteria?
And, am I too tired to socialize because the Sarcoidosis caused the infections, or because having Sarcoidosis takes up all of my energy to analyze and reconsider and rethink everything that has happened this past year? At least the latter is something I can deal with and stop after I learn more and, hopefully, learn it is futile and stop. The former is what I don't want more than anything. I don't want to feel like a sick person again.
We didn't make it last year, I was still recovering from surgery and wasn't up to a night of socializing. And we didn't go this year, either.
I spent today at the zoo chaperoning my first grader's class after spending a week in and out of the doctor's office trying to figure out how I ended up with two separate infections in the course of a few days. I'm not up to socializing tonight, and knew I wouldn't be.
But, a friend asked me today if we were going. I told her we were not planning on it and why. Later, she said it was funny that being diagnosed with something suddenly makes the symptoms seem real.
Maybe she's right. Last year, I was healthy right up to the moment the doctor told me I had cancer. And this year, I was on my way back, ready to get on with my life and to put the cancer behind me, right up to the point I was told I had to have surgery again, and then again when I was told I have an incurable auto-immune disease.
Last year, the breast cancer diagnosis made me start questioning all of my choices in life to see what I'd done to cause the cancer. Later, I realized this is a futile and destructive path to go down, so I stopped. But then, the breast cancer did make me sick, or rather, the cure, in the form of surgery and Tamoxifen, made me feel like a sick person.
This year, I am questioning every illness and syndrome and diagnosis I've ever had to try to figure out if it was or is the Sarcoidosis causing it. This week, my doctor said that the second infection was probably a result of my immune system fighting the first infection, so some of the bacteria moved along. So now I wonder, was the first infection a result of my immune system being too busy attacking my lungs and lymph nodes to notice bacteria?
And, am I too tired to socialize because the Sarcoidosis caused the infections, or because having Sarcoidosis takes up all of my energy to analyze and reconsider and rethink everything that has happened this past year? At least the latter is something I can deal with and stop after I learn more and, hopefully, learn it is futile and stop. The former is what I don't want more than anything. I don't want to feel like a sick person again.
Sunday, October 5, 2008
Why I hate October
Charitable organizations have, in recent years, discovered that setting aside a special day or month is a great way to focus peoples' attention and to raise funds. I think they all got the idea from Jerry Lewis. His Labor Day Telethon must be the single largest charitable fundraiser in the world. And, we all know when it's coming; Labor Day weekend is Telethon time.
Apparently, October is Breast Cancer time. It's nearly impossible to miss this fact. Pink ribbons are festooned everywhere, like decorations! Go to the grocery store or Target or even the mall; products suddenly have pink labels, pink balloons are displayed and giant pink ribbons are everywhere.
On one level, I get it. This month is a time to raise awareness, to remind women to get checked regularly, and to raise money. But, here's the thing. One in 8 women in the Bay Area has or has had beast cancer. We are quite aware. And, for me, it's the pink.
Pink is cute, pink is cheery, pink is little girlie and sweet cupcakes. Breast cancer is not pink. Breast cancer is devastating; it is ugly scars; it is chemo and hair loss and brittle dry skin and nails and it is fear and it is most definitely not pink.
Why is it considered ok to "decorate" for Breast Cancer Awareness month in October, but these same stores don't decorate for Prostate Cancer Awareness in September? Where are the blue ribbons everywhere? Where are the blue ribbon Craftsman Tools? If we have pink ribbon KitchenAid mixers, why not a blue ribbon tool set?
I went to the grocery store the other day. It was on my way to work and I was in a hurry and focused on getting what I needed. At the checkout, the clerk asked me, very innocently, if I wanted to donate to breast cancer research. That was the wrong question at the wrong time. I'm not proud of what followed, but it happened, and I'll bet I'm not the only survivor who has reacted this way.
When I looked up, I saw a big pink ribbon on the checkstand. I snapped. I replied that no, I wouldn't be donating today because I've given about all I can to my surgeon. And furthermore, the store should be more sensitive to the fact that 1 in 8 women in San Jose is dealing with breast cancer, and by the way, pink is a terrible color for breast cancer because breast cancer is ugly and devastating and definitely NOT pink.
I won't be going back to that store again this month.
And, just maybe, I've been under a little more stress than I thought.
Apparently, October is Breast Cancer time. It's nearly impossible to miss this fact. Pink ribbons are festooned everywhere, like decorations! Go to the grocery store or Target or even the mall; products suddenly have pink labels, pink balloons are displayed and giant pink ribbons are everywhere.
On one level, I get it. This month is a time to raise awareness, to remind women to get checked regularly, and to raise money. But, here's the thing. One in 8 women in the Bay Area has or has had beast cancer. We are quite aware. And, for me, it's the pink.
Pink is cute, pink is cheery, pink is little girlie and sweet cupcakes. Breast cancer is not pink. Breast cancer is devastating; it is ugly scars; it is chemo and hair loss and brittle dry skin and nails and it is fear and it is most definitely not pink.
Why is it considered ok to "decorate" for Breast Cancer Awareness month in October, but these same stores don't decorate for Prostate Cancer Awareness in September? Where are the blue ribbons everywhere? Where are the blue ribbon Craftsman Tools? If we have pink ribbon KitchenAid mixers, why not a blue ribbon tool set?
I went to the grocery store the other day. It was on my way to work and I was in a hurry and focused on getting what I needed. At the checkout, the clerk asked me, very innocently, if I wanted to donate to breast cancer research. That was the wrong question at the wrong time. I'm not proud of what followed, but it happened, and I'll bet I'm not the only survivor who has reacted this way.
When I looked up, I saw a big pink ribbon on the checkstand. I snapped. I replied that no, I wouldn't be donating today because I've given about all I can to my surgeon. And furthermore, the store should be more sensitive to the fact that 1 in 8 women in San Jose is dealing with breast cancer, and by the way, pink is a terrible color for breast cancer because breast cancer is ugly and devastating and definitely NOT pink.
I won't be going back to that store again this month.
And, just maybe, I've been under a little more stress than I thought.
Wednesday, October 1, 2008
More Waiting
I have amazing friends and family. Everyone has been extremely supportive and understanding as I've tried to accept the new diagnosis. At first, everyone was excited and glad that it did not turn out to be cancer, and some wondered why I wasn't happier about it. After I explained what Sarcoidosis is, they understood. This is better than having to have chemo, but it is a lifelong disease now; incurable and unpredictable. It's not something I'm going to jump up and down about.
Folks have also been wanting me to share what I know and when I'll be seen for this. Well, I still know very little. Everything I've read about Sarcoidosis emphasizes its variability. For some, it can be debilitating, for others, it can go into remission for years with no symptoms at all.
At the moment, I seem to be somewhere in the middle. I'm becoming more and more aware of the lung issue as I find myself short of breath easily and more tired than I'd like. The most frustrating thing right now is that exercise is getting more difficult each week. And those who know me are well aware of the high value I place on my treadmill!
As for treatment, I have an appointment with the rumetologist that my oncologist recommended, but not until October 30. Apparently new patient appointments are few and far between. Until then? I'll keep studying and exploring some alternative therapy options. I've already gotten a referral to a holistic doctor that does a lot with supplements and will try to get this going as soon as I can.
I'm also trying to deal with the emotional and spiritual impact this diagnosis is having on me. Last Friday I indulged in a whole day of angry. I was angry about having cancer, about not being able to tolerate the treatment so now I'm in a wait and see mode for that, about having to be cut open again, about the new diagnosis, about not knowing what to do about it, and about having to realize I'm not as healthy as I thought, and I may never get to be again. I was irrational and teary and short with everyone and had no patience for anyone or anything; all the things I dislike about anger. It was a lovely day. But then, the next day came and there were children and a husband to love and care for and refugees to see and a hair appointment to keep and a street fair to enjoy. Saturday was much better.
So maybe, I'm not just waiting, but I am daily doing what I have to do to adjust to the new normal and attempting, with more or less success, to learn to deal with it.
Hey, didn't I have a new normal last year? How often does normal get to readjust? I think I'm ready for a normal to stick around for awhile. The adjustments are no fun at all.
Folks have also been wanting me to share what I know and when I'll be seen for this. Well, I still know very little. Everything I've read about Sarcoidosis emphasizes its variability. For some, it can be debilitating, for others, it can go into remission for years with no symptoms at all.
At the moment, I seem to be somewhere in the middle. I'm becoming more and more aware of the lung issue as I find myself short of breath easily and more tired than I'd like. The most frustrating thing right now is that exercise is getting more difficult each week. And those who know me are well aware of the high value I place on my treadmill!
As for treatment, I have an appointment with the rumetologist that my oncologist recommended, but not until October 30. Apparently new patient appointments are few and far between. Until then? I'll keep studying and exploring some alternative therapy options. I've already gotten a referral to a holistic doctor that does a lot with supplements and will try to get this going as soon as I can.
I'm also trying to deal with the emotional and spiritual impact this diagnosis is having on me. Last Friday I indulged in a whole day of angry. I was angry about having cancer, about not being able to tolerate the treatment so now I'm in a wait and see mode for that, about having to be cut open again, about the new diagnosis, about not knowing what to do about it, and about having to realize I'm not as healthy as I thought, and I may never get to be again. I was irrational and teary and short with everyone and had no patience for anyone or anything; all the things I dislike about anger. It was a lovely day. But then, the next day came and there were children and a husband to love and care for and refugees to see and a hair appointment to keep and a street fair to enjoy. Saturday was much better.
So maybe, I'm not just waiting, but I am daily doing what I have to do to adjust to the new normal and attempting, with more or less success, to learn to deal with it.
Hey, didn't I have a new normal last year? How often does normal get to readjust? I think I'm ready for a normal to stick around for awhile. The adjustments are no fun at all.
Friday, September 26, 2008
Diagnosis
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.
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.
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.
Thursday, August 21, 2008
Celebrity breast cancer
Monday morning I met with the first of several plastic surgeons I want to interview about having reconstruction done.
Tuesday morning I was on the treadmill watching Good Morning America and listening to Robin Roberts and Christina Applegate talk about Ms. Applegate's decision to have a double mastectomy and the reconstruction she'll soon begin.
Wednesday morning I was listening to the radio and trying not to alternately laugh and scream as the DJs tried to figure out what a mastectomy involved and how reconstruction worked. The only thing worse than the DJs were the callers! Men calling in to offer their discomfort at the idea of a woman having her breasts cut off is just pathetic!
Each time a celebrity is diagnosed with breast cancer, we hear about how brave she is and what a role model she is. We also hear all about her treatmnet choices and people feel free to comment on them. "Why didn't she have chemo?" "Why would she choose mastectomy?" "Can she work while undergoing treatment?" No where in the media hype is the one discussion I think we need to have about breast cancer - IT IS NOT ONE DISEASE! (on a side note, the working thing is just hilarious. Millions of women and men work through cancer treatment every single day, how are celebrities any different?)
Breast cancer diagnosis includes a wide range of cancers, stages and hormonal involvement factors. Every woman has to deal with the type of cancer cells found, the stage at which they are found, the hormone receptor status, and then her own family history before she can work with her doctors to develop the best plan for her. And that's the thing. Every treatment is going to be different. Sometimes it is lumpectomy and radiation, other times chemo is necessary, and other times the mastectomy offers the best option. The only ones who can make the final decision are the patient along with her doctors and family.
Ms. Applegate has been nothing but forthright about her diagnosis and treatment decision. Those of us who have been in her shoes get it. As for those DJs and callers, they found another topic pretty quickly.
Tuesday morning I was on the treadmill watching Good Morning America and listening to Robin Roberts and Christina Applegate talk about Ms. Applegate's decision to have a double mastectomy and the reconstruction she'll soon begin.
Wednesday morning I was listening to the radio and trying not to alternately laugh and scream as the DJs tried to figure out what a mastectomy involved and how reconstruction worked. The only thing worse than the DJs were the callers! Men calling in to offer their discomfort at the idea of a woman having her breasts cut off is just pathetic!
Each time a celebrity is diagnosed with breast cancer, we hear about how brave she is and what a role model she is. We also hear all about her treatmnet choices and people feel free to comment on them. "Why didn't she have chemo?" "Why would she choose mastectomy?" "Can she work while undergoing treatment?" No where in the media hype is the one discussion I think we need to have about breast cancer - IT IS NOT ONE DISEASE! (on a side note, the working thing is just hilarious. Millions of women and men work through cancer treatment every single day, how are celebrities any different?)
Breast cancer diagnosis includes a wide range of cancers, stages and hormonal involvement factors. Every woman has to deal with the type of cancer cells found, the stage at which they are found, the hormone receptor status, and then her own family history before she can work with her doctors to develop the best plan for her. And that's the thing. Every treatment is going to be different. Sometimes it is lumpectomy and radiation, other times chemo is necessary, and other times the mastectomy offers the best option. The only ones who can make the final decision are the patient along with her doctors and family.
Ms. Applegate has been nothing but forthright about her diagnosis and treatment decision. Those of us who have been in her shoes get it. As for those DJs and callers, they found another topic pretty quickly.
Saturday, August 9, 2008
My Do-Over Birthday
I dreaded my birthday this year. Last year I had mistakenly scheduled my biopsy on my birthday, because no one gets diagnosed with cancer on their birthday, right? Wrong.
So this year, I decided to do the mature thing and run away. Actually, we just very purposefully scheduled our family vacation during this week so that I could escape and not be home to brood. And it worked!
We had a great week in the mountains, just dh and the girls and I. We hiked, swam, rafted, played, read, and even roller skated at 8200 feet! Hiking at high altitude, chasing the girls up and over rocks, diving into the icy lake, and spending time with my husband. All of these small moments made me realize that despite the cancer, I am still me. And with a little effort and some time away, I can remember how to laugh and play and forget the past year for a little while.
So, despite my low bar for comparison, this birthday was just fabulous. And the do-over? I'm still taking it. I figure getting a cancer diagnosis on my birthday entitles me to try to do 41 just a little better this time!
Thursday, July 17, 2008
39.3 Miles!!!
We did it! My friends came, we walked, and we conquered the challenge! OK, so the details:
Kelley, Clare and I took the train up to SF Friday afternoon where we met up with Kelli and Carole. Checkin at the Westin was crazy! Long lines, lots of people milling around, but controlled chaos. We all got checked in with minimal problems and then had a wonderful dinner and straight to sleep.
Saturday started at 4am. I can't remember the last time I had to get up that early! By 4:30 we were back at the Westin waiting for the buses to take us to Golden Gate Park. This was a COLD morning in the City! At 6:30 opening ceremonies began and by 7 we started walking (very slowly!) out of the park. We quickly learned that this was going to be a fun walk! In addition to the upbeat walkers, there was the motorcycle club that served as our traffic crew- they helped us at the lights to be sure we obeyed the rule, kept out of traffic and stretched! There were the entertainment crews - Hooker for Hooters and Ready Set Wonderboobs! Very fun, great tunes and very high energy support! The Youth Crew - kids between 10 and 16 who were there to help with everything; filling water bottles, giving directions, and offering a smile or set of beads! and finally, my San Jose Bicycle Police (my new crush!) - this crew not only kept us safe, they gave incredible support and great humor throughout the weekend!
Saturday was 26.2 miles: Golden Gate Park, across the Bridge, through Sausalito and all the way out through Mill Valley (has that moved further North?) then a turn around and back. BTW, the bridge is twice as long from Sausalito back as it is the other direction! The day ended at Crissy Field in a little blue tent, but not before a great shower, dinner, foot massage and a few minutes of yoga stretches. Carole and Kelli wound up in the Medical tent because Kelli got dehydrated (the most common ailment after blisters!). My Kelley and I went over to cheer her up and then I ended up a patient when I locked my knees and passed out on the medical tent floor! This cheered everyone immensely since they now have ammunition they can use to mock me for years to come!
Sunday started at a more reasonable hour. We finally started walking a little after 7:30. Kelley and I jumped ahead, but learned at the first big rest stop that Carole and Kelli were swept and taken on the bus. Kelli still felt sick and Carole's feet were chopped liver by then )-: We met up with Clare not long after and then the three of us finished the walk about 2pm. Highlights of Sunday included seeing our girls cheering for us on Polk Street, the slog up Potrero hill, the Avon Breast Center at San Francisco General Hospital, lunch in Dolores Park, and cheers from the homeless guys along the way.
Carole walked to the finish line with us, and then we all celebrated with our families! After the celebration, it was home, to sleep in a bed and try to keep from getting too stiff and sore.
I told the girls this weekend that they could have just blown me off since I was still on drugs when I came up with this crazy idea...but I'm so glad they came anyway. I have amazing friends and fabulous supporters and I'm so glad they all did this with me!
Kelli and I have uploaded our pics:
My Pics (a few borrowed from Kelli!) - http://picasaweb.google.com/draelee2008/AvonWalk2008
Thursday, July 10, 2008
Time to Walk!
The Avon Walk officially begins Saturday the 12th at 6:30am with the kickoff in Golden Gate Park, then we walk for 26 miles, camp out on Chrissy Field on San Francisco Bay, get up and walk another 13 miles on Sunday before the closing ceremony ends at 3:30. That's just the official stuff!
There is also the gathering of friends from far and wide...one flying in today after spending the night in the Chicago airport, another flying in tomorrow from North Carolina, and yet another driving up from San Diego and hoping to not get stuck somewhere in the middle because of fires. I will never forget that I have some amazing friends!
Then there is the packing. Calling each other every night for days trying to figure out what we need, how this will work, what to wear when we know the temperature with change 40-50 degrees each day, how to mark our tents so we don't end up lost in the sea of identical tents on the field Saturday night, and making sure we don't forget that all important chap stick and band aids!
And the hotel. Check-in for the event is Friday afternoon, so we will stay at a hotel close to where we will need to meet the shuttles between 3:30 and 5:30am on Saturday morning (YIKES!). Last night I called the hotel to double-check our reservations and to ask a couple of questions. Somehow, in the course of this perfectly banal conversation, I accidentally made the reservation clerk cry!
When she asked why I was coming up, I told her about the walk. She is from the UK and she mentioned what wonderful work the Avon Foundation has done with breast cancer in the UK. She wasn't aware of this event, so we chatted a bit. In the course of the discussion, she told me that her mum had died of breast cancer. Apparently she'd beaten it once, but it came back and was untreatable by the time they caught it. I told her about my diagnosis last August and told her that I'm doing this so that I, and the millions of women like me and like her mum, don't get it again. We chatted a bit more and I hope that our talk helped her. She is still grieving so much.
After that call, it hit me again how hard this weekend is going to be. The walk brings together families who are grieving. Like me they may be grieving the loss of their pre-cancer lives, or they are grieving the loss of a friend, a partner, a mother or a daughter who has had to battle this insidious disease. I'm still not quite ready to call myself a survivor, but someday soon I will be ready. If raising this money and walking with all of these amazing people takes me, and everyone like me, one step closer to staying a survivor, it will be totally worth it.
There is also the gathering of friends from far and wide...one flying in today after spending the night in the Chicago airport, another flying in tomorrow from North Carolina, and yet another driving up from San Diego and hoping to not get stuck somewhere in the middle because of fires. I will never forget that I have some amazing friends!
Then there is the packing. Calling each other every night for days trying to figure out what we need, how this will work, what to wear when we know the temperature with change 40-50 degrees each day, how to mark our tents so we don't end up lost in the sea of identical tents on the field Saturday night, and making sure we don't forget that all important chap stick and band aids!
And the hotel. Check-in for the event is Friday afternoon, so we will stay at a hotel close to where we will need to meet the shuttles between 3:30 and 5:30am on Saturday morning (YIKES!). Last night I called the hotel to double-check our reservations and to ask a couple of questions. Somehow, in the course of this perfectly banal conversation, I accidentally made the reservation clerk cry!
When she asked why I was coming up, I told her about the walk. She is from the UK and she mentioned what wonderful work the Avon Foundation has done with breast cancer in the UK. She wasn't aware of this event, so we chatted a bit. In the course of the discussion, she told me that her mum had died of breast cancer. Apparently she'd beaten it once, but it came back and was untreatable by the time they caught it. I told her about my diagnosis last August and told her that I'm doing this so that I, and the millions of women like me and like her mum, don't get it again. We chatted a bit more and I hope that our talk helped her. She is still grieving so much.
After that call, it hit me again how hard this weekend is going to be. The walk brings together families who are grieving. Like me they may be grieving the loss of their pre-cancer lives, or they are grieving the loss of a friend, a partner, a mother or a daughter who has had to battle this insidious disease. I'm still not quite ready to call myself a survivor, but someday soon I will be ready. If raising this money and walking with all of these amazing people takes me, and everyone like me, one step closer to staying a survivor, it will be totally worth it.
Monday, June 30, 2008
Real life filling in
A friend sent me a note recently asking why I hadn't posted in awhile. I replied that work and kids and travelling husband had kept me away from the blog. This is true, life has begun to fill back in where cancer had taken over for awhile.
So, to catch up, Tamoxifen leaves with as much destruction as it enters! The hot flashes and eye problems and mood swings ticked up for a few weeks and then, just last week, I realized it was getting better, much better. My cycles have returned with a vengeance as my OB predicted, but that is nothing compared to everything else I've been dealing with the past few months.
Training for the Avon Walk has been going ok, not as much time to talk as I'd like, but I feel pretty confident that I'll manage it. The best part has been talking with my wonderful friends who are doing this with me and watching their sites as they've all raised the needed funds! Less than 2 weeks to go! Carole and I will do one last long training walk this week to prepare, then we'll finish packing and making all the arrangements to meet up with everyone and do the walk on the 12th and 13th! A friend at church challenged me this week. He said if I can do the Avon Walk, I can certainly do the San Jose Marathon in October, hmmm.... One challenge at a time!
I also want to bring up what I've been doing at work. The church I work for and am a member of recently decided to sponsor a refugee transition house in San Jose. This partnership with Catholic Charities and other churches will allow us to make a significant impact in the lives of refugees as they arrive here to begin their new life in San Jose. Working on this project and preparing for the first arrivals to stay in our house has been a huge learning experience as well as an enormous reality check about what we have and what we have to give to others who have suffered unspeakable deprivation, torture and slavery. This work, that I learned about only because I was investigating projects for the church, has already begun to change my life and the lives of everyone who meets and works with the refugees. It is a huge project and one that feels overwhelming at times, but I try very hard to remember three things. First, this isn't me leading it. God has had a hand in everything that has happened so far and the amazing connections that brought this work to us in the first place. Second, every bit of help makes a difference in some one's life. Third, we will get better at this because we have good partners and teachers to lead the way. More about this work on the church web site, http://www.newlifesanjose.org/compassion.php.
So that's it. Real life filling in where cancer took up so much time for the past year. Do I still deal with the aftereffects? Yes. Do I still fear recurrence and want to do more to stop it? Of course. Do I still hate that morning shower when I see my chest the way the surgeon left it? Oh my yes. But, do I also have more times through the day when I don't think about the cancer? Thankfully, yes.
So, to catch up, Tamoxifen leaves with as much destruction as it enters! The hot flashes and eye problems and mood swings ticked up for a few weeks and then, just last week, I realized it was getting better, much better. My cycles have returned with a vengeance as my OB predicted, but that is nothing compared to everything else I've been dealing with the past few months.
Training for the Avon Walk has been going ok, not as much time to talk as I'd like, but I feel pretty confident that I'll manage it. The best part has been talking with my wonderful friends who are doing this with me and watching their sites as they've all raised the needed funds! Less than 2 weeks to go! Carole and I will do one last long training walk this week to prepare, then we'll finish packing and making all the arrangements to meet up with everyone and do the walk on the 12th and 13th! A friend at church challenged me this week. He said if I can do the Avon Walk, I can certainly do the San Jose Marathon in October, hmmm.... One challenge at a time!
I also want to bring up what I've been doing at work. The church I work for and am a member of recently decided to sponsor a refugee transition house in San Jose. This partnership with Catholic Charities and other churches will allow us to make a significant impact in the lives of refugees as they arrive here to begin their new life in San Jose. Working on this project and preparing for the first arrivals to stay in our house has been a huge learning experience as well as an enormous reality check about what we have and what we have to give to others who have suffered unspeakable deprivation, torture and slavery. This work, that I learned about only because I was investigating projects for the church, has already begun to change my life and the lives of everyone who meets and works with the refugees. It is a huge project and one that feels overwhelming at times, but I try very hard to remember three things. First, this isn't me leading it. God has had a hand in everything that has happened so far and the amazing connections that brought this work to us in the first place. Second, every bit of help makes a difference in some one's life. Third, we will get better at this because we have good partners and teachers to lead the way. More about this work on the church web site, http://www.newlifesanjose.org/compassion.php.
So that's it. Real life filling in where cancer took up so much time for the past year. Do I still deal with the aftereffects? Yes. Do I still fear recurrence and want to do more to stop it? Of course. Do I still hate that morning shower when I see my chest the way the surgeon left it? Oh my yes. But, do I also have more times through the day when I don't think about the cancer? Thankfully, yes.
Friday, May 23, 2008
Flying without a broken net
This week was my second post-treatment checkup with my oncologist. I went ready. I had my list of issues in hand and was prepared to talk through all of the options.
We started with my list. My oncologist is a pretty straightforward guy, a reason to like him and not like him at the same time. He read it and then proceeded to test me on all of the symptoms: How much, How often, Who checked the corneal abrasions to determine the Tamoxifen caused them, etc. After we talked for awhile, he said, "Well, you seem to have every possible side effect you can get from Tamoxifen. You know, earlier today, I had a patient here who has been on Tamoxifen for more than four years. She can't see what the fuss is about since she doesn't have a single side effect." Yea, I hate her.
So then we talked about options. He cautioned against removing my ovaries because my fake-menopause symptoms have been so bad, and pushing me into menopause would likely have the same side effects and I would not be able to take any hormones to mitigate them.
His suggestion? Stop taking the Tamoxifen.
That's it!? stop taking it? His reasoning is that the nature of my tumors, my predicted recurrence risk of 12-15%, and the aggressive surgery my surgeon and radiologist had me do should likely prevent a recurrence. Can he promise no recurrence? No. But he will keep monitoring me to catch anything that might pop up as quickly as possible. And, I won't be miserable every day for the next five years (huge plus there).
So, while I am delighted to not be taking these crazy pills every day and I look forward to getting my life back a bit as it leaves my system (this takes a couple of weeks!), I do feel a bit like I'm flying without a net. I know I'm mixing my metaphors here, but I just don't want to get hit by the bus again. Tamoxifen was a seriously broken net, causing me misery and holes in my corneas, but at least I was "doing something" to keep the cancer away. Now, it's just me hoping it won't come back.
Are there things I can do to help? Of course, I can not eat meat or dairy, keep my fat intake low and my weight in check and exercise regularly and eat organically as much as possible. But since I started doing all of these things 20 years ago and got cancer anyway, they don't feel very preventative.
We started with my list. My oncologist is a pretty straightforward guy, a reason to like him and not like him at the same time. He read it and then proceeded to test me on all of the symptoms: How much, How often, Who checked the corneal abrasions to determine the Tamoxifen caused them, etc. After we talked for awhile, he said, "Well, you seem to have every possible side effect you can get from Tamoxifen. You know, earlier today, I had a patient here who has been on Tamoxifen for more than four years. She can't see what the fuss is about since she doesn't have a single side effect." Yea, I hate her.
So then we talked about options. He cautioned against removing my ovaries because my fake-menopause symptoms have been so bad, and pushing me into menopause would likely have the same side effects and I would not be able to take any hormones to mitigate them.
His suggestion? Stop taking the Tamoxifen.
That's it!? stop taking it? His reasoning is that the nature of my tumors, my predicted recurrence risk of 12-15%, and the aggressive surgery my surgeon and radiologist had me do should likely prevent a recurrence. Can he promise no recurrence? No. But he will keep monitoring me to catch anything that might pop up as quickly as possible. And, I won't be miserable every day for the next five years (huge plus there).
So, while I am delighted to not be taking these crazy pills every day and I look forward to getting my life back a bit as it leaves my system (this takes a couple of weeks!), I do feel a bit like I'm flying without a net. I know I'm mixing my metaphors here, but I just don't want to get hit by the bus again. Tamoxifen was a seriously broken net, causing me misery and holes in my corneas, but at least I was "doing something" to keep the cancer away. Now, it's just me hoping it won't come back.
Are there things I can do to help? Of course, I can not eat meat or dairy, keep my fat intake low and my weight in check and exercise regularly and eat organically as much as possible. But since I started doing all of these things 20 years ago and got cancer anyway, they don't feel very preventative.
Monday, May 19, 2008
Some mommies have boobies
The weather got unbearably hot last week so, like most of the folks where I live, I had to quickly pull out some Summer clothes for work. One of the hot days, I threw on a dress I've had for several years. It was one I couldn't bear to toss when I cleaned out my closet several months ago to remove all of the "breast-required" tops and dresses.
That night, sitting with my girls, my youngest commented that my dress was old. Apparently she remembers it from last year(?). So I said, "Yes, I've had this for a few years, but it is comfy and cool." And then she patted my chest and said the thing that only a six-year-old can come up with, "Yea, but it's loose up here cuz you don't have boobies any more."
When I regained my power of speech, I replied that that was true. But in our family, we know that there are many things that are different in different families. We know that some families have mommies and daddies, and some have just a mommy or just daddies. We know some familes have lots of children and some have just one or two children or even no children. We know that some babies come from mommies' tummies and some babies come from China, and now we also know that some mommies have boobies, and some don't.
To which she responded, "Yea, you don't." Then she gave me a hug and ran off to play race cars.
Nothing like a six-year old to put everything into perspective!
That night, sitting with my girls, my youngest commented that my dress was old. Apparently she remembers it from last year(?). So I said, "Yes, I've had this for a few years, but it is comfy and cool." And then she patted my chest and said the thing that only a six-year-old can come up with, "Yea, but it's loose up here cuz you don't have boobies any more."
When I regained my power of speech, I replied that that was true. But in our family, we know that there are many things that are different in different families. We know that some families have mommies and daddies, and some have just a mommy or just daddies. We know some familes have lots of children and some have just one or two children or even no children. We know that some babies come from mommies' tummies and some babies come from China, and now we also know that some mommies have boobies, and some don't.
To which she responded, "Yea, you don't." Then she gave me a hug and ran off to play race cars.
Nothing like a six-year old to put everything into perspective!
Sunday, May 18, 2008
Getting my list together
This week I'll finally have my 6-month checkup with the oncologist. We got delayed a couple of times, but it should happen this time. I mentioned the upcoming date to my friend, Sue, who is also a survivor (Hodgkins and Breast cancer, an amazing woman!). She asked if I had my list ready. She says every time she visits the oncologist, she has a pre-written list of all the questions and concerns she has, it helps make the appointment more productive. She says her oncologist now just asks her for the list when she comes in!
I do have a list that I'm working on. So far it includes:
TAMOXIFEN ISSUES
1. recurring corneal abrasians and corneal infections
2. hot flashes/night sweats
3. power surges and heart palpitations
4. mood swings and "the fog"
5. water retention
6. weight gain that is faster than I can possibly be eating, particularly while training
7. gynecological stuff
8. monthly migraines (I used to get them about once a year, now I get them once a month)
OTHER
1. recurring pinching across the chest wall
Basically, I'm going to ask him what, besides the Tamoxifen, I can do. I already posted about talking to my ob/gyn about more surgery to remove my ovaries. So, I'm going to ask him about that and if there is another drug I can try.
It is strange to think about seeing a doctor and bringing a list for pretty much the rest of my life. Right now, it is a long list. My hope is that, someday, the list will be much shorter and the decisions will be much easier.
I do have a list that I'm working on. So far it includes:
TAMOXIFEN ISSUES
1. recurring corneal abrasians and corneal infections
2. hot flashes/night sweats
3. power surges and heart palpitations
4. mood swings and "the fog"
5. water retention
6. weight gain that is faster than I can possibly be eating, particularly while training
7. gynecological stuff
8. monthly migraines (I used to get them about once a year, now I get them once a month)
OTHER
1. recurring pinching across the chest wall
Basically, I'm going to ask him what, besides the Tamoxifen, I can do. I already posted about talking to my ob/gyn about more surgery to remove my ovaries. So, I'm going to ask him about that and if there is another drug I can try.
It is strange to think about seeing a doctor and bringing a list for pretty much the rest of my life. Right now, it is a long list. My hope is that, someday, the list will be much shorter and the decisions will be much easier.
Monday, May 5, 2008
14 miles and a big hill
OK, 14 miles is a LONG Walk. It is particularly long when, at the end of the first half, when one has already walked nearly 7 miles, there is a steep grade up the back of a dam!
My friend, Carole, and I have decided we need far more practice on hills. The second day of the Avon walk will be through various neighborhoods in San Francisco. If we are struggling with the one big hill on our regular path, we'll crash within the first few miles in SF! So, more practice on hills, and we'll definitely tackle the dam again!
The best part about this practice walk was meeting other women who are also committed to the cause. What surprised me most was how many of us were doing the walk for the first time. And, of the 8 or so women in the group, only 2 of us have had breast cancer ourselves. The rest are walking because they have been touched by this epidemic through friends or family members. Their dedication and support of those they love is truly inspiring.
My friend, Carole, and I have decided we need far more practice on hills. The second day of the Avon walk will be through various neighborhoods in San Francisco. If we are struggling with the one big hill on our regular path, we'll crash within the first few miles in SF! So, more practice on hills, and we'll definitely tackle the dam again!
The best part about this practice walk was meeting other women who are also committed to the cause. What surprised me most was how many of us were doing the walk for the first time. And, of the 8 or so women in the group, only 2 of us have had breast cancer ourselves. The rest are walking because they have been touched by this epidemic through friends or family members. Their dedication and support of those they love is truly inspiring.
Tuesday, April 22, 2008
10 Miles and a Few Months
This week my friend, Carole, and I started training in earnest for the Avon Walk for Breast Cancer. Not ones to take things too slowly, we decided to plunge into a 10-mile walk on Sunday!
The weather was great, a bit cool, but much better than being too hot, and the trail from Campbell to Los Gatos was absolutely gorgeous. While we certainly didn't break any records, 3 1/2 hours went by quickly and we ended the walk feeling tired but triumphant!
The Avon Walk is coming up in July and I am beginning to realize that I am really going to do this. Back in January when I signed up, I think I thought in the back of my mind that, if my health wasn't what I wanted or if I just couldn't bring myself to ask for the money, that I could just quietly back out.
That was before I got a posse together! These ladies are fierce and determined! I've posted links for both Carole and Kelley's Avon pages to this page so that, if you'd like to sponsor an amazing woman, you can take your pick.
The next few months will go by quickly as we continue to train and raise funds for this amazing organization. I'll try to keep you posted. BTW, the next milestone will be 14 miles on May 3, wish us luck!
The weather was great, a bit cool, but much better than being too hot, and the trail from Campbell to Los Gatos was absolutely gorgeous. While we certainly didn't break any records, 3 1/2 hours went by quickly and we ended the walk feeling tired but triumphant!
The Avon Walk is coming up in July and I am beginning to realize that I am really going to do this. Back in January when I signed up, I think I thought in the back of my mind that, if my health wasn't what I wanted or if I just couldn't bring myself to ask for the money, that I could just quietly back out.
That was before I got a posse together! These ladies are fierce and determined! I've posted links for both Carole and Kelley's Avon pages to this page so that, if you'd like to sponsor an amazing woman, you can take your pick.
The next few months will go by quickly as we continue to train and raise funds for this amazing organization. I'll try to keep you posted. BTW, the next milestone will be 14 miles on May 3, wish us luck!
Friday, April 11, 2008
Bone Density
When it comes back, breast cancer has a nasty habit of showing up in the bones, and by the time it is caught, it is late in the process. Strong bones are the best defense against this type of recurrence.
Through all of my doctor visits and treatment and research, I've learned that because of my height, small frame, dairy allergy, and race, I am a prime candidate for osteoporosis. Now, this is the kind of stuff that just bugs me. I feel like a hypochondriac, but it all comes back to the bus. It has already hit me once, and my job is to make sure it doesn't hit me again.
So, at my Ob/Gyn appointment a few weeks ago we talked about bone density and all the things I do regularly to help, like take my calcium and Vitamin D every day and do weight-bearing exercise regularly. We also talked about the leaching that Tamoxifen can do to women's bones. After all that, she threw in a bone density screening, just to put my mind at ease. When she came back and said, "Well, that didn't turn out as I expected," my heart sank.
Back to the radiologist, scene of all my bad mammograms, biopsies and surgery prep. I'll admit I did have a small panic attack just sitting in the waiting room! When I finally went in, the tech said we could chat through the scan. I asked if she could just make sure this test turned out better than every other test I've had in this office. She said she'd try.
Three weeks later, I finally got the results. I'm good to go for 2 years! Hooray! My first clean medical test in the past year! It's the small victories that are the best.
Through all of my doctor visits and treatment and research, I've learned that because of my height, small frame, dairy allergy, and race, I am a prime candidate for osteoporosis. Now, this is the kind of stuff that just bugs me. I feel like a hypochondriac, but it all comes back to the bus. It has already hit me once, and my job is to make sure it doesn't hit me again.
So, at my Ob/Gyn appointment a few weeks ago we talked about bone density and all the things I do regularly to help, like take my calcium and Vitamin D every day and do weight-bearing exercise regularly. We also talked about the leaching that Tamoxifen can do to women's bones. After all that, she threw in a bone density screening, just to put my mind at ease. When she came back and said, "Well, that didn't turn out as I expected," my heart sank.
Back to the radiologist, scene of all my bad mammograms, biopsies and surgery prep. I'll admit I did have a small panic attack just sitting in the waiting room! When I finally went in, the tech said we could chat through the scan. I asked if she could just make sure this test turned out better than every other test I've had in this office. She said she'd try.
Three weeks later, I finally got the results. I'm good to go for 2 years! Hooray! My first clean medical test in the past year! It's the small victories that are the best.
Thursday, April 10, 2008
Tamoxifen and Eyes
Back in November I blogged about the side effects of Tamoxifen that I learned about from a variety of web sites and my medication bottle. One of the side effects noted was visual problems.
Yesterday I learned exactly what that meant. I made my second visit to my optometrist yesterday because I was having pain and difficulty seeing out of my right eye. In February, I went in because I had the same symptoms in my left eye. At that time, it was diagnosed as a corneal infection, I got some steroid/antibiotic eye drops and took them for 10 days. When my right eye started acting up, I assumed the infection had popped up again in the other eye. It did, sort of.
The new diagnosis is a slight corneal infection as the result of corneal erosions. Basically, I have little pits in my cornea that are causing the pain and vision problems. These are the result of inflammation of my cornea and a decrease in tear production.
Because I was having a recurrence, my optometrist spent a long time talking with me about my vision history and the medications I am taking. He noted that the Tamoxifen can suppress the immune system, so strange infections are not uncommon. This I knew. He also checked his PDR, and corneal erosions, it seems, can be caused by Tamoxifen. That, I didn't know! Not everyone gets them, but because I already have an inflammatory disease, Fibromyalgia, I'm more susceptible to this side effect.
So, I'm back on the steroid/antibiotic eye drops and the doctor advised me to start using lubricating eye drops several times a day and to be very conscious about how often I blink, particularly while at work. In a few weeks, if the erosions are better, then I'll go on an anti-inflammatory eye drop along with the lubricating drops for the duration of my Tamoxifen treatment and I'll add regular visits to the optometrist to my list of doctor appointments.
I am well aware that this is not a huge problem, and I am lucky that we caught it early and it can be treated pretty simply, but it just feels like yet one more thing to add to my "joy of cancer" pile. So far, Tamoxifen has introduced me to hot flashes, brain fog, power surges and heart palpitations, mood swings, and now eroded corneas.
Gotta go blink.
Yesterday I learned exactly what that meant. I made my second visit to my optometrist yesterday because I was having pain and difficulty seeing out of my right eye. In February, I went in because I had the same symptoms in my left eye. At that time, it was diagnosed as a corneal infection, I got some steroid/antibiotic eye drops and took them for 10 days. When my right eye started acting up, I assumed the infection had popped up again in the other eye. It did, sort of.
The new diagnosis is a slight corneal infection as the result of corneal erosions. Basically, I have little pits in my cornea that are causing the pain and vision problems. These are the result of inflammation of my cornea and a decrease in tear production.
Because I was having a recurrence, my optometrist spent a long time talking with me about my vision history and the medications I am taking. He noted that the Tamoxifen can suppress the immune system, so strange infections are not uncommon. This I knew. He also checked his PDR, and corneal erosions, it seems, can be caused by Tamoxifen. That, I didn't know! Not everyone gets them, but because I already have an inflammatory disease, Fibromyalgia, I'm more susceptible to this side effect.
So, I'm back on the steroid/antibiotic eye drops and the doctor advised me to start using lubricating eye drops several times a day and to be very conscious about how often I blink, particularly while at work. In a few weeks, if the erosions are better, then I'll go on an anti-inflammatory eye drop along with the lubricating drops for the duration of my Tamoxifen treatment and I'll add regular visits to the optometrist to my list of doctor appointments.
I am well aware that this is not a huge problem, and I am lucky that we caught it early and it can be treated pretty simply, but it just feels like yet one more thing to add to my "joy of cancer" pile. So far, Tamoxifen has introduced me to hot flashes, brain fog, power surges and heart palpitations, mood swings, and now eroded corneas.
Gotta go blink.
Sunday, April 6, 2008
Getting "The Girl" back
I am a big fan of fashion. I love clothes and shoes and I love to browse fashion magazines and catalogs in my (albeit limited) spare time. One of my favorite television shows is "What Not to Wear" on TLC. The part I love about it is how they teach women to view clothes as something to express themselves effectively and how the right clothes, with the right fit, can boost one's confidence and completely change the way others see us and how we see ourselves.
Part of this show is often helping women deal with, "the girls". Since it is basic cable, they don't say breasts. Finding the right bra, enhancing, minimizing, properly supporting, and appreciating their "girls" is often a big part of a woman's learning process for the show.
As I've watched the show in recent months, I've come to see "the girls" to be a metaphor for all the things I've been dealing with since the cancer. While for many women, hair loss is the biggest change to their outward appearance during cancer treatment, mine is suddenly finding myself with no "girls" at all.
Losing my breasts, as I've written before, is in itself a big adjustment. But, what I've also learned, is that there are secondary losses that have taken some time to manifest and for me to figure out. I've lumped all of them together as "The Girl". These have included a diminished sense of femininity, a loss of self-confidence, and ridiculous changes to my body because of the forced menopause of the Tamoxifen. Instead of just taking these as a given and accepting them, I decided to find ways to get "The Girl" back.
Some of my steps have been difficult, conversations with my doctor about subjects I would never have considered discussing before, trying to explain odd mood swings and behavior to my husband, and adding yet more supplements and pills to my daily routine. Others have been leaps of "why not"? These have been more fun. I've started dressing more feminine than I used to, I am doggedly trying to find the perfect swimsuit that will cover everything it needs to cover while still letting me feel like a girl, and I started taking a class called "Pussycat Dolls".
The last one was the scariest to start, but it is proving to be the most helpful. The Pussycat Dolls songs are utter fluff, and their dance style is over the top, but if you are trying to get your girl back, it is a great way to start. The dances are physically challenging and the workout part has been helpful for getting my upper body strength back, but the routines are also designed to be sexy and playful, emphasizing all of our girliest curves, so I am learning, slowly, to get used to my new body shape in a place that is accepting, safe, and most importantly, fun.
I had dinner with some girlfriends the other night and I told them about taking the class. One friend asked if I've found "The Girl" yet. Not yet, but I hope to soon.
Part of this show is often helping women deal with, "the girls". Since it is basic cable, they don't say breasts. Finding the right bra, enhancing, minimizing, properly supporting, and appreciating their "girls" is often a big part of a woman's learning process for the show.
As I've watched the show in recent months, I've come to see "the girls" to be a metaphor for all the things I've been dealing with since the cancer. While for many women, hair loss is the biggest change to their outward appearance during cancer treatment, mine is suddenly finding myself with no "girls" at all.
Losing my breasts, as I've written before, is in itself a big adjustment. But, what I've also learned, is that there are secondary losses that have taken some time to manifest and for me to figure out. I've lumped all of them together as "The Girl". These have included a diminished sense of femininity, a loss of self-confidence, and ridiculous changes to my body because of the forced menopause of the Tamoxifen. Instead of just taking these as a given and accepting them, I decided to find ways to get "The Girl" back.
Some of my steps have been difficult, conversations with my doctor about subjects I would never have considered discussing before, trying to explain odd mood swings and behavior to my husband, and adding yet more supplements and pills to my daily routine. Others have been leaps of "why not"? These have been more fun. I've started dressing more feminine than I used to, I am doggedly trying to find the perfect swimsuit that will cover everything it needs to cover while still letting me feel like a girl, and I started taking a class called "Pussycat Dolls".
The last one was the scariest to start, but it is proving to be the most helpful. The Pussycat Dolls songs are utter fluff, and their dance style is over the top, but if you are trying to get your girl back, it is a great way to start. The dances are physically challenging and the workout part has been helpful for getting my upper body strength back, but the routines are also designed to be sexy and playful, emphasizing all of our girliest curves, so I am learning, slowly, to get used to my new body shape in a place that is accepting, safe, and most importantly, fun.
I had dinner with some girlfriends the other night and I told them about taking the class. One friend asked if I've found "The Girl" yet. Not yet, but I hope to soon.
Sunday, March 23, 2008
More to think about
The other day I had an appointment with my ob/gyn. I have not seen her since she sent me for my mammogram last June. So, when she jokingly asked how I've been, we had a few things to catch up on. The reason I went to see her was that my surgeon suggested I talk with her about the trouble I've been having with some of the Tamoxifen side effects.
I wish I'd gone to see her months ago! She was great. We talked a long time about the cancer and the Tamoxifen and all the side effects, particularly the daily fog and black cloud that appears regularly to mess up my brain function and emotions.
She is not a fan of Tamoxifen. Her biggest issue is that oncologists (mine included), focus on recurrence rates at 5 and 10 years. They do not look at the 15 year recurrence rates, which spike upward for Tamoxifen patients because the estrogen suppressors make the cancer slower growing and harder to detect until it has reached a later stage (no one told me this before!). She also has serious concerns about the risks of endometrial cancer, which my oncologist did mention. And, she takes seriously the side effects I am dealing with, particularly the fog and confusion and the black cloud.
So, she gave me the names of some herbal supplements to help with the side effects, but she also encouraged me to talk with my oncologist when I see him next month about the risks and benefits of stopping the Tamoxifen and instead having my ovaries removed. According to my ob/gyn, the side effects she's observed in patients who have made this choice are far more manageable with the surgical option and it presents no risk of endometrial cancer.
I see my oncologist in a month. Between now and then I have some research and thinking to do...
I wish I'd gone to see her months ago! She was great. We talked a long time about the cancer and the Tamoxifen and all the side effects, particularly the daily fog and black cloud that appears regularly to mess up my brain function and emotions.
She is not a fan of Tamoxifen. Her biggest issue is that oncologists (mine included), focus on recurrence rates at 5 and 10 years. They do not look at the 15 year recurrence rates, which spike upward for Tamoxifen patients because the estrogen suppressors make the cancer slower growing and harder to detect until it has reached a later stage (no one told me this before!). She also has serious concerns about the risks of endometrial cancer, which my oncologist did mention. And, she takes seriously the side effects I am dealing with, particularly the fog and confusion and the black cloud.
So, she gave me the names of some herbal supplements to help with the side effects, but she also encouraged me to talk with my oncologist when I see him next month about the risks and benefits of stopping the Tamoxifen and instead having my ovaries removed. According to my ob/gyn, the side effects she's observed in patients who have made this choice are far more manageable with the surgical option and it presents no risk of endometrial cancer.
I see my oncologist in a month. Between now and then I have some research and thinking to do...
Friday, March 14, 2008
The Humiliating Phone Call
Last night when I collected our mail, I noticed an envelope from my radiologist's office. At first I thought it was yet another bill, but I haven't seen him since last August, so that wasn't likely. Now I wish it was a bill.
It was a reminder letter for a follow-up mammogram and ultrasound on the biopsy I had at the end of August. The same biopsy that led my radiologist to recommend the bilateral mastectomy!
So, this morning, I had to call the radiologist's office to explain that I'd like them to correct my records because the breast they want to examine no longer exists! The receptionist I spoke to was very nice, and she even admitted that there is a note in my file that the radiologist had made the recommendation and that they should check with the surgeon before sending a follow-up notice (oops).
I told her I'd appreciate not getting these any more, as this is a pretty humiliating call to have to make. She agreed and promised to fix my chart. I'll believe it in six months when I DON'T get a reminder letter!
It was a reminder letter for a follow-up mammogram and ultrasound on the biopsy I had at the end of August. The same biopsy that led my radiologist to recommend the bilateral mastectomy!
So, this morning, I had to call the radiologist's office to explain that I'd like them to correct my records because the breast they want to examine no longer exists! The receptionist I spoke to was very nice, and she even admitted that there is a note in my file that the radiologist had made the recommendation and that they should check with the surgeon before sending a follow-up notice (oops).
I told her I'd appreciate not getting these any more, as this is a pretty humiliating call to have to make. She agreed and promised to fix my chart. I'll believe it in six months when I DON'T get a reminder letter!
Thursday, March 6, 2008
What I did to you
This week I saw my surgeon for my 6-month checkup. Mostly it was lots of questions:
Any pain? Random twinges and pulls, some painful, but mostly annoying
Heart palpitations, racing or irregular heartbeat? Only during hot flashes
Side effects from the Tamoxifen? hot flashes, mood swings, big gray cloud over my head a couple weeks at a time, random periods...
Fun stuff.
As I expected, we talked about the reconstruction issue. She thinks I should see some good reconstructions and talk with some women who have done it after their mastectomies, not during. She also gave me the names of two surgeons to consult.
One of the reasons I like my surgeon is that she doesn't pull punches about what she does, and she always recognizes that, in the end, it's my body. So, she told me not to rush into anything, but she also expressed that , "What I did to you was brutal". And, living this way forever doesn't work for a lot of women. She also went through the process, that it will take several months and involves 3 outpatient surgeries and a process of stretching the muscle and skin from the inside.
We also talked about the prosthetics and my dislike of their feel, weight, and the whole fakeness of it all for me. I know that they work for thousands of women, but for me, I worry that I'd just always feel like people could tell I was wearing fake boobs, kind of like the tissue in the bra in jr. high!
I'm not sure yet that I don't feel the same way about implants, but I'll check it out and then decide. Mostly I'm just sick to pieces of thinking so much about a body part I didn't give much thought to at all before the cancer.
The Breastcancer.org site does a pretty good job, with personal reflections, of explaining what mastectomy does to women's psyche and the different ways women approach their post-cancer boob life (http://www.breastcancer.org/tips/reconstruction/index.jsp). Now, if they would just tell me what to do and make it easy to finally decide!
Any pain? Random twinges and pulls, some painful, but mostly annoying
Heart palpitations, racing or irregular heartbeat? Only during hot flashes
Side effects from the Tamoxifen? hot flashes, mood swings, big gray cloud over my head a couple weeks at a time, random periods...
Fun stuff.
As I expected, we talked about the reconstruction issue. She thinks I should see some good reconstructions and talk with some women who have done it after their mastectomies, not during. She also gave me the names of two surgeons to consult.
One of the reasons I like my surgeon is that she doesn't pull punches about what she does, and she always recognizes that, in the end, it's my body. So, she told me not to rush into anything, but she also expressed that , "What I did to you was brutal". And, living this way forever doesn't work for a lot of women. She also went through the process, that it will take several months and involves 3 outpatient surgeries and a process of stretching the muscle and skin from the inside.
We also talked about the prosthetics and my dislike of their feel, weight, and the whole fakeness of it all for me. I know that they work for thousands of women, but for me, I worry that I'd just always feel like people could tell I was wearing fake boobs, kind of like the tissue in the bra in jr. high!
I'm not sure yet that I don't feel the same way about implants, but I'll check it out and then decide. Mostly I'm just sick to pieces of thinking so much about a body part I didn't give much thought to at all before the cancer.
The Breastcancer.org site does a pretty good job, with personal reflections, of explaining what mastectomy does to women's psyche and the different ways women approach their post-cancer boob life (http://www.breastcancer.org/tips/reconstruction/index.jsp). Now, if they would just tell me what to do and make it easy to finally decide!
Tuesday, March 4, 2008
Checkups and Swimsuits
Tomorrow I see my surgeon for my 6-month post-op checkup. In one sense I can't believe it has been 6 months since the mastectomy, and in another, it feels like forever ago that everything was OK and I didn't have cancer.
Enough on that....
Spring is almost here and Summer will be here soon.
Swimsuit season! While I have been studiously avoiding the swimsuit catalogs this year, I want to pass along the name of a great company I've found that makes custom swimsuits and has been helping me to design a swimsuit top that will cover my scars and still be be girly, but will NOT have the oh-so-useless shelf bra or molded cups that most suits come with!
Wild Iris Custom Swimwear in Redding, CA http://www.swimsuit4u.com/ offers swimsuits for all body types, will add a pocket for prosthesis if you need, and has been unbelievably helpful in helping me create a swimsuit top that I'll be able to wear with my girls to the beach and the YMCA pool this summer.
Check out the site and be sure to tell Tina I sent you!
Enough on that....
Spring is almost here and Summer will be here soon.
Swimsuit season! While I have been studiously avoiding the swimsuit catalogs this year, I want to pass along the name of a great company I've found that makes custom swimsuits and has been helping me to design a swimsuit top that will cover my scars and still be be girly, but will NOT have the oh-so-useless shelf bra or molded cups that most suits come with!
Wild Iris Custom Swimwear in Redding, CA http://www.swimsuit4u.com/ offers swimsuits for all body types, will add a pocket for prosthesis if you need, and has been unbelievably helpful in helping me create a swimsuit top that I'll be able to wear with my girls to the beach and the YMCA pool this summer.
Check out the site and be sure to tell Tina I sent you!
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