I am definitely not one of the breast cancer survivors who embrace the pink. I've come to dread October; I get nauseous looking at all of the pink ribbons; I won't go near a Safeway because I've been known to reply in unexpected ways to the perky cashier asking if I'd like to donate to breast cancer ("No thanks, I gave at the oncologist's office"); I find the constant barrage of "Donate to breast cancer" mailings and emails utterly annoying - seriously, I did everything possible to get rid of the damn stuff, why would I donate to it? USE A GRAMMAR GUIDE PEOPLE!! I even hate getting the October issues of magazines, since every one of them has a litany of "tips" to help me avoid getting breast cancer; I'm waiting for the first brave editor to finally just say, "It's random, you might get it even if you do everything right." Of course they'd be fired before it came to print, still...
This week I I did read one issue (actually it was a November issue) that gave me pause, though, More Magazine ran a set of articles written by young survivors about how they are dealing with the ramifications of breast cancer 10, 12, 15 years out. One woman said she'd finally gotten to the point where she could mourn the breasts she lost to mastectomy 12 years before, but only when she'd reached menopause and finally realized she was going to live to be an old woman, something she'd never hoped for in the years following her mastectomy. Another woman kept making deals with God to live until... Until she had children, until her children reached their teens, until she could see them get married, and finally, until she met her first grandchild. She still makes deals for each day. She survived the thing that could easily kill her, so every day is a gift.
The one that struck me most deeply was the story of the woman whose friendship fell apart with the friend who cared for her during her breast cancer treatment. That same friend was diagnosed shortly after. their diagnoses and treatments were different. Each tried to be there for the other, but what ended the friendship was how each of the women handled their cancer. One needed to get through and move on with her life, the other needed to talk about it every day. After awhile, and after several inappropriate comments, the writer simply stopped answering the phone or calling her friend back. She could not live her life constantly thinking about the thing that hurt her so deeply. The writer affirms that many people say that cancer made them a better person, for her, it didn't, it just made her "quicker with the trapdoor." she learned to find her limits and remove herself from those who pushed them too far.
That's how I feel about October. I do everything I can to avoid the pink. To me it is nothing more than a reminder that my body has been mutilated by cancer. A pretty pink ribbon belongs no where near me, so I'll be trapdooring them as best I can.
Sunday, November 14, 2010
Saturday, October 2, 2010
Are You Sure You Can Do That?
Sarcoidosis creates lifestyle challenges. The disease makes breathing difficult, and the treatments make life difficult. In the past couple of months I've had several colds, bronchitis and Whooping Cough (still fighting that one), not to mention the always-present soul-sucking exhaustion.
Deciding to NOT let the Sarcoid determine life choices is also challenging. My youngest daughter's third grade class took a field trip to Lassen National Park this week. As a mom, I wanted to go with her, both because she is 8 and sending her 300 miles away without me was not something I was comfortable with; and besides, I've never been to Lassen and it sounded fun!
Mount Lassen is a dormant volcano in Northern California that rises to over 12,000 feet. The plan was to introduce the children to volcanoes and to nature by hiking up and around the peak. These were not 8-year old hikes, these were serious altitude scaling adult hikes that the kids managed unbelievably well.
Because of my health status, it would have been very easy to not do the hikes. A friend on the hike was very concerned and asked me several times, "Are you sure you should be doing this?" My answer was always, "No, I'm not sure, but I'm going to try."
Strenuous hiking at high altitudes is probably not something a Sarcoid patient should do. However, my daughter wanted me with her to see this amazing place, and I did not know for certain I couldn't do it, so I tried. Did I cough a lot? without a doubt. But did I also see spectacular vistas and experience the joy of watching my girl learn about a world she never knew existed? absolutely. Am I going to pay for this choice with another cold or bronchitis or serious chest pain? I hope not, but won't be surprised when it happens. It was worth it.
It is easy to let a chronic disease become debilitating. Giving in to pain and symptoms is always an option, and one that I know no one would fault me for. This thing sucks! But I want, every day, to try at least to make the more difficult choice of finding out if I can do something. Besides, I figure if the cancer-sarcoid-whooping cough mom can do it, everyone should be able to :-)
Deciding to NOT let the Sarcoid determine life choices is also challenging. My youngest daughter's third grade class took a field trip to Lassen National Park this week. As a mom, I wanted to go with her, both because she is 8 and sending her 300 miles away without me was not something I was comfortable with; and besides, I've never been to Lassen and it sounded fun!
Mount Lassen is a dormant volcano in Northern California that rises to over 12,000 feet. The plan was to introduce the children to volcanoes and to nature by hiking up and around the peak. These were not 8-year old hikes, these were serious altitude scaling adult hikes that the kids managed unbelievably well.
Because of my health status, it would have been very easy to not do the hikes. A friend on the hike was very concerned and asked me several times, "Are you sure you should be doing this?" My answer was always, "No, I'm not sure, but I'm going to try."
Strenuous hiking at high altitudes is probably not something a Sarcoid patient should do. However, my daughter wanted me with her to see this amazing place, and I did not know for certain I couldn't do it, so I tried. Did I cough a lot? without a doubt. But did I also see spectacular vistas and experience the joy of watching my girl learn about a world she never knew existed? absolutely. Am I going to pay for this choice with another cold or bronchitis or serious chest pain? I hope not, but won't be surprised when it happens. It was worth it.
It is easy to let a chronic disease become debilitating. Giving in to pain and symptoms is always an option, and one that I know no one would fault me for. This thing sucks! But I want, every day, to try at least to make the more difficult choice of finding out if I can do something. Besides, I figure if the cancer-sarcoid-whooping cough mom can do it, everyone should be able to :-)
Friday, August 27, 2010
Doctors Retire?
Today was my 6-month checkup and I was in the worst possible place before went. My daughter has been sick with a lung infection for almost 2 weeks and the doctor is pulling straws to try to resolve it. For me this has meant a lot of worry, juggling work and a sick child and a healthy child (the little one) and very little sleep.
But even more than this, another mom from my oldest daughter's Las Madres playgroup passed away because of cancer last Sunday. This is the second mom we've buried, and two others of us are in cancer remission. This seems so wrong. At it's height the group was somewhere between 30 and 40 moms, that means at least 10% of the group has gotten cancer. There is no rhyme or reason for cancer in young women today, but it feels like it is getting worse, and it scares me every time I have to go in for that check-up.
I always dread the check-up; then I see my doctor. He talks through any of my fears or worries, he asks me tons of questions about how I'm doing with the Sarcoid, and then he tells me that he is my least important doctor right now. He is more concerned about the Sarcoid than the cancer. So then I breathe and am reassured that I'm still ok.
But today, after he said all of that, he also told me that he is retiring. He's decided that it's time to stop. Technically he retired a few months ago, but hasn't been able to give up his patients yet. He said that is the hardest part, he cares about all of us and doesn't want to stop being there for us.
Now, my oncologist has a reputation. He is well-known as both the guru of cancer and as the most curmudgeonly doctor in the area. Those who did not choose him as their oncologist focus on that aspect of his personality. Those of us who do choose him tend to also because of that aspect of his personality. He tells the truth with no clinical mumbo-jumbo and with no dressing. If he is concerned, he says so, if there is nothing to worry about, he says so. As we talked he asked me what people say about him and I told him the truth, which he knew already. I also told him I'm nervous to have a new doctor, but trust him to choose the right people to take his practice. I also told him to ride his motorcycle more, but safely.
In a way I feel like the child who thought teachers lived at school. It never occured to me that someone I depend on so much would retire. I wish him well, but worry that my next check-up won't be quite as reassuring at the end.
But even more than this, another mom from my oldest daughter's Las Madres playgroup passed away because of cancer last Sunday. This is the second mom we've buried, and two others of us are in cancer remission. This seems so wrong. At it's height the group was somewhere between 30 and 40 moms, that means at least 10% of the group has gotten cancer. There is no rhyme or reason for cancer in young women today, but it feels like it is getting worse, and it scares me every time I have to go in for that check-up.
I always dread the check-up; then I see my doctor. He talks through any of my fears or worries, he asks me tons of questions about how I'm doing with the Sarcoid, and then he tells me that he is my least important doctor right now. He is more concerned about the Sarcoid than the cancer. So then I breathe and am reassured that I'm still ok.
But today, after he said all of that, he also told me that he is retiring. He's decided that it's time to stop. Technically he retired a few months ago, but hasn't been able to give up his patients yet. He said that is the hardest part, he cares about all of us and doesn't want to stop being there for us.
Now, my oncologist has a reputation. He is well-known as both the guru of cancer and as the most curmudgeonly doctor in the area. Those who did not choose him as their oncologist focus on that aspect of his personality. Those of us who do choose him tend to also because of that aspect of his personality. He tells the truth with no clinical mumbo-jumbo and with no dressing. If he is concerned, he says so, if there is nothing to worry about, he says so. As we talked he asked me what people say about him and I told him the truth, which he knew already. I also told him I'm nervous to have a new doctor, but trust him to choose the right people to take his practice. I also told him to ride his motorcycle more, but safely.
In a way I feel like the child who thought teachers lived at school. It never occured to me that someone I depend on so much would retire. I wish him well, but worry that my next check-up won't be quite as reassuring at the end.
Monday, August 9, 2010
Trying 31 Again
The past several weeks have been a roller coaster as side effects and withdrawal symptoms have been competing for my attention. The exiting Prednisone has left behind annoying rashes and excruciating headaches that last for weeks on end. The incoming TNF drug has started muscle cramping and pain in my back. And the mix of both plus the sarcoid moving around leaves me wincing from little jabs in my chest and exhausted all day long.
But that is all beside the point, it is just the fallout of the chronic disease. No, the real issue of the past few weeks has been my birthday! I have never been a fan of my birthday. I don't like being fussed over, and I'm not big on parties for my birthday, it all just makes me uncomfortable. And the past three years have done nothing to help. Three years ago I had a biopsy on my birthday that turned out to be breast cancer (Lesson: NEVER have a biopsy on your birthday, no matter how routine it is supposed to be). Two years ago, shortly after my birthday, I told my oncologist I had a naggy rib; turned out to be Sarcoidosis. Last year I let then start me on oral chemo drugs just before my birthday and spent the week after my birthday panicked about the hair falling out in the shower.
So one might see how my birthday makes me a bit cautious. Therefore, when my sweet husband asked me what I wanted, I told him I'd like him to make me 31. Why 31? Well, 29 is just cliche, and besides, no one knows anything at 29. No, 31 is a perfect year. For me, it was before we had kids, but we both had good jobs, we'd already bought our first house and we still had enough money to travel. It was the year we were on the cusp of being real grown-ups, we just hadn't yet gotten all of the baggage that goes with that. More importantly, I still had good skin, my hair didn't require coloring, and cancer was something that happened to old people.
I'm not ready to fit into my current age. I feel like I've lost the past three years, so until I figure out a way to get that time back, I'm going to pick random ages every year and try them out. However, I'll be selective in those choices. As I said, 29 is cliche, and I'd never pick anything between 12 and 17, no one with any sense wants to relive their teen years! Perhaps when I'm 60 I'll be ready to be 44, or not.
But that is all beside the point, it is just the fallout of the chronic disease. No, the real issue of the past few weeks has been my birthday! I have never been a fan of my birthday. I don't like being fussed over, and I'm not big on parties for my birthday, it all just makes me uncomfortable. And the past three years have done nothing to help. Three years ago I had a biopsy on my birthday that turned out to be breast cancer (Lesson: NEVER have a biopsy on your birthday, no matter how routine it is supposed to be). Two years ago, shortly after my birthday, I told my oncologist I had a naggy rib; turned out to be Sarcoidosis. Last year I let then start me on oral chemo drugs just before my birthday and spent the week after my birthday panicked about the hair falling out in the shower.
So one might see how my birthday makes me a bit cautious. Therefore, when my sweet husband asked me what I wanted, I told him I'd like him to make me 31. Why 31? Well, 29 is just cliche, and besides, no one knows anything at 29. No, 31 is a perfect year. For me, it was before we had kids, but we both had good jobs, we'd already bought our first house and we still had enough money to travel. It was the year we were on the cusp of being real grown-ups, we just hadn't yet gotten all of the baggage that goes with that. More importantly, I still had good skin, my hair didn't require coloring, and cancer was something that happened to old people.
I'm not ready to fit into my current age. I feel like I've lost the past three years, so until I figure out a way to get that time back, I'm going to pick random ages every year and try them out. However, I'll be selective in those choices. As I said, 29 is cliche, and I'd never pick anything between 12 and 17, no one with any sense wants to relive their teen years! Perhaps when I'm 60 I'll be ready to be 44, or not.
Wednesday, July 14, 2010
More steroid evil and the importance of oxygen
The fabulous news is that I am working my way down the steroid ladder at last! I'm down to 10mg a day and should be steroid-free for the first time in more than a year and a half in just a couple of weeks! I was so excited to get off the steroids that it took me completely by surprise when the crazies came back with a vengeance!
After months at high doses, my body got used to the 'roids and I no longer had the running commentaries in my head or the fidgetiness. It never occured to me that decreasing the drug would bring all of this back! Apparently, as the body gets used to a certain level of steroid, taking it away puts you into withdrawals and ALL of the side effects come back! My poor husband. He couldn't understand why I spent most of the weekend with my ipod ear buds in; blasting music drowned out the voices in my head. Boy that sounds crazy...
Along with the crazies came sleeplessness, terrible forgetfulness, moodiness, and munchies. I'm such a delight to live with these days!
In the midst of all of this I try to keep in mind that if this works it will have been worth it. I'll be off the seroids and the Humira will work and then I'll just do the shots for a couple of years to keep the sarcoid in remission. That's my plan and I'm sticking with it!
I'm just a little nervous about oxygen. For the second time, I wore an oxygen meter overnight. My pulmonologist is concerned about sleep apnea and decreased oxygen absorption while I sleep. When I saw him last I explained that I really can't have sleep apnea. I don't have the time or the energy to deal with one more thing, so this last meter will just have to show great oxygen levels :-)
As I've said before, there is nothing all that interesting about sarcoid. It is just one ridiculous thing after another. Thankfully, the steroid crazies do help me see the humor in all of it!
After months at high doses, my body got used to the 'roids and I no longer had the running commentaries in my head or the fidgetiness. It never occured to me that decreasing the drug would bring all of this back! Apparently, as the body gets used to a certain level of steroid, taking it away puts you into withdrawals and ALL of the side effects come back! My poor husband. He couldn't understand why I spent most of the weekend with my ipod ear buds in; blasting music drowned out the voices in my head. Boy that sounds crazy...
Along with the crazies came sleeplessness, terrible forgetfulness, moodiness, and munchies. I'm such a delight to live with these days!
In the midst of all of this I try to keep in mind that if this works it will have been worth it. I'll be off the seroids and the Humira will work and then I'll just do the shots for a couple of years to keep the sarcoid in remission. That's my plan and I'm sticking with it!
I'm just a little nervous about oxygen. For the second time, I wore an oxygen meter overnight. My pulmonologist is concerned about sleep apnea and decreased oxygen absorption while I sleep. When I saw him last I explained that I really can't have sleep apnea. I don't have the time or the energy to deal with one more thing, so this last meter will just have to show great oxygen levels :-)
As I've said before, there is nothing all that interesting about sarcoid. It is just one ridiculous thing after another. Thankfully, the steroid crazies do help me see the humor in all of it!
Wednesday, June 23, 2010
Define "Chronic"
A friend recently asked me why I have not been posting lately. I told her it's because there is nothing interesting to write about a chronic disease.
I started this blog after I was diagnosed with breast cancer. My plan was to use it as a way of tracking my process through the cancer maze of diagnosis, treatment and recovery. It was a way not only for me to work through the complications of the disease but also to let my amazing friends and family know what was happening. So many of them were so wonderful through all of it. They cared about me and my family; they didn't want to bother my husband or me; the blog was a way of letting them know what was happening.
That was nearly three years ago. The blog stayed up because the breast cancer journey inexplicably became a battle against sarcoidosis.
But here's the difference, while I will always live with the possibility that the breast cancer will come back, it seems that I'll be living with the sarcoid and its daily implications for a very long time. When I was dealing with the breast cancer, it was a defined disease. There are tests, studies, protocols and treatment plans. It wasn't easy, and the decisions were difficult, the diagnosis was terrifying, but I knew what the goal was - get the cancer out and keep it out. My doctors knew how to do that. The treatment plans for breast cancer are not pretty; I have 5" scars on either side of my chest as proof of that; but they work a large percentage of the time; just ask one of the millions of breast cancer survivors.
Sarcoidosis is different. I figured this out pretty quickly when I had to look up "sarcoidosis" and then have it explained to me several times. And then, I had to explain it to everyone I knew. No one knows what it is. Very few people have it. Of those who have it, almost half have no symptoms. Only one in 20 sarcoid patients have symptoms that cannot be controlled and sent into remission by Prednisone. Apparently I'm one of them.
This is where it gets blah, blah, blah. I have many doctors. I have many doctor appointments. The staff at my local pharmacy are very sweet, but they know me better than I would like. I keep a list of medications on my iphone and email it to my husband at least every other week as it is updated. I have pain on a daily basis, I have insanity and a host of ridiculous side effects cause by medications designed to help one thing but screw up a bunch of other things. I live with the fear that this won't get better and that, eventually, the thing that scared me most about the cancer will happen as a result of the sarcoid instead.
I don't expect any of this to end anytime soon. That's why I don't post much anymore. Sarcoid is blah, blah, blah. It's not interesting, and posting is not helpful for me or my wonderful friends, it's messy and, ultimately, boring.
I started this blog after I was diagnosed with breast cancer. My plan was to use it as a way of tracking my process through the cancer maze of diagnosis, treatment and recovery. It was a way not only for me to work through the complications of the disease but also to let my amazing friends and family know what was happening. So many of them were so wonderful through all of it. They cared about me and my family; they didn't want to bother my husband or me; the blog was a way of letting them know what was happening.
That was nearly three years ago. The blog stayed up because the breast cancer journey inexplicably became a battle against sarcoidosis.
But here's the difference, while I will always live with the possibility that the breast cancer will come back, it seems that I'll be living with the sarcoid and its daily implications for a very long time. When I was dealing with the breast cancer, it was a defined disease. There are tests, studies, protocols and treatment plans. It wasn't easy, and the decisions were difficult, the diagnosis was terrifying, but I knew what the goal was - get the cancer out and keep it out. My doctors knew how to do that. The treatment plans for breast cancer are not pretty; I have 5" scars on either side of my chest as proof of that; but they work a large percentage of the time; just ask one of the millions of breast cancer survivors.
Sarcoidosis is different. I figured this out pretty quickly when I had to look up "sarcoidosis" and then have it explained to me several times. And then, I had to explain it to everyone I knew. No one knows what it is. Very few people have it. Of those who have it, almost half have no symptoms. Only one in 20 sarcoid patients have symptoms that cannot be controlled and sent into remission by Prednisone. Apparently I'm one of them.
This is where it gets blah, blah, blah. I have many doctors. I have many doctor appointments. The staff at my local pharmacy are very sweet, but they know me better than I would like. I keep a list of medications on my iphone and email it to my husband at least every other week as it is updated. I have pain on a daily basis, I have insanity and a host of ridiculous side effects cause by medications designed to help one thing but screw up a bunch of other things. I live with the fear that this won't get better and that, eventually, the thing that scared me most about the cancer will happen as a result of the sarcoid instead.
I don't expect any of this to end anytime soon. That's why I don't post much anymore. Sarcoid is blah, blah, blah. It's not interesting, and posting is not helpful for me or my wonderful friends, it's messy and, ultimately, boring.
Monday, May 10, 2010
Ready to go...I think
The pulmonologist cleared me to start the Humira today, with the following warnings:
No airplanes, no long trips, no hospitals, no doctor offices (except my own if I can avoid it), stay away from anyone who is sick (thankfully my kids are pretty healthy, for now) and call his office immediately if my cough changes, if I get a fever, if I get a rash or anything changes in my symptoms that seems out of the ordinary. And, he won't let me start lowering the prednisone until I'm on the Humira for at least 6 weeks.
Noooooo, I'm not worried!
On the up side, he said people who exercise regularly tend to do better on Humira. So, I keep moving!
I also learned today that I'll be starting the Boniva infusions soon. Apparently, losing a bunch of bone mass in a single year is a reason to start boosting the bones (Sally Field better be right!!!!). I hate the idea of having to take yet another drug, but I swear, if I break a hip, someone will get punched :-}
No airplanes, no long trips, no hospitals, no doctor offices (except my own if I can avoid it), stay away from anyone who is sick (thankfully my kids are pretty healthy, for now) and call his office immediately if my cough changes, if I get a fever, if I get a rash or anything changes in my symptoms that seems out of the ordinary. And, he won't let me start lowering the prednisone until I'm on the Humira for at least 6 weeks.
Noooooo, I'm not worried!
On the up side, he said people who exercise regularly tend to do better on Humira. So, I keep moving!
I also learned today that I'll be starting the Boniva infusions soon. Apparently, losing a bunch of bone mass in a single year is a reason to start boosting the bones (Sally Field better be right!!!!). I hate the idea of having to take yet another drug, but I swear, if I break a hip, someone will get punched :-}
Monday, April 26, 2010
No end in sight yet
My most recent CT scan showed what I had feared, more changes in the sarcoid and a bacterial infection. I knew I had bronchitis, but had hoped it would resolve itself. Unfortunately, as the pulmonologist explained, the sarcoid traps the bacteria in the lungs so I can't get better without drugs, and normal antibiotics don't work.
So two things. First, I have to take these uber-strong antibiotics for 2 weeks to get the infection (we hope!). Second, I'm stuck on the steroids for longer because we can't start the new treatment if I have any infection at all in my body because the new drugs will severely shift my immune system and I could get very very ill and they won't event start to taper the steroids until I'm on the new treatment for at least 6 weeks.
I get so upset dealing with all of these delays and backsliding. I have to constantly remind myself that sarcoid is a chronic disease and, at least for me, it is not going to be a straight shot from illness to getting better. It has been and seems like it will continue to be fits and starts with some improvements but also lots of disappointments.
My husband and I had to have a frank talk about our vacation this year. For the past two years, largely because of the cancer and the sarcoid, we've done very low-key vacations, renting a house and spending the week basically resting as a family. This year, by husband and girls really wanted to do something big. As much as I'd love to go somewhere far away or exciting, I'm afraid. I worry that I'll have trouble with the new treatment, that I'll be too tired or sick to really participate, or that we'll go on a plane and I'll get really sick because my immune system will be so messed up. So, we've decided to stay close for one more year and that next year, when I'm in full remission, we'll go someplace really fun (hope, hope!).
I hate putting my life on hold, and the change to a close-by vacation isn't the end of the world in any sense, but if I've learned anything over the past couple of years, it's that you have to live your life the best you can with the hand you've got and enjoy the small things, because it can all change in a heartbeat.
So two things. First, I have to take these uber-strong antibiotics for 2 weeks to get the infection (we hope!). Second, I'm stuck on the steroids for longer because we can't start the new treatment if I have any infection at all in my body because the new drugs will severely shift my immune system and I could get very very ill and they won't event start to taper the steroids until I'm on the new treatment for at least 6 weeks.
I get so upset dealing with all of these delays and backsliding. I have to constantly remind myself that sarcoid is a chronic disease and, at least for me, it is not going to be a straight shot from illness to getting better. It has been and seems like it will continue to be fits and starts with some improvements but also lots of disappointments.
My husband and I had to have a frank talk about our vacation this year. For the past two years, largely because of the cancer and the sarcoid, we've done very low-key vacations, renting a house and spending the week basically resting as a family. This year, by husband and girls really wanted to do something big. As much as I'd love to go somewhere far away or exciting, I'm afraid. I worry that I'll have trouble with the new treatment, that I'll be too tired or sick to really participate, or that we'll go on a plane and I'll get really sick because my immune system will be so messed up. So, we've decided to stay close for one more year and that next year, when I'm in full remission, we'll go someplace really fun (hope, hope!).
I hate putting my life on hold, and the change to a close-by vacation isn't the end of the world in any sense, but if I've learned anything over the past couple of years, it's that you have to live your life the best you can with the hand you've got and enjoy the small things, because it can all change in a heartbeat.
Saturday, April 17, 2010
Prednisone is still evil
After months of daily Prednisone, my doctors agreed that it is probably not working for me. Anything less than 50mg a day and symptoms get worse. The problem is that at these doses, the side effects are just stupid. Between the heart thing, a couple bouts of bronchitis, massive bruises on my legs and general 'roid craziness, I think I'm ready to be done with this stuff.
But, before I can move on to the next try, which will be TNF drugs that are usually used for Rheumatoid Arthritis, we need more tests.
The first one was a bone density scan. I had one a year ago when we first tried the Prednisone and at that time it was fine. This one, not so much. My bone denisty has decreased enough that they call it "significant" and diagnose me as "osteopenic" which can lead up to osteoporosis. The solution? more drugs! At my next appointment we'll discuss what kind of bone-building medication to start and what kind of super-calcium/vitamin D supplement I need to go on. The other recommendation is regular exercise, which is not an issue, since I'm already doing that, but it does give me more incentive to do that walking and weight lifting. I don't plan to break a hip!
The second test was a new CT scan, for which I'm still waiting on the results. My plan is that this report will say "Oh everything looks good, the Prednisone started the job and the TNF drugs will just finish it up and you'll soon be in remission!" That's my plan anyway.
But, before I can move on to the next try, which will be TNF drugs that are usually used for Rheumatoid Arthritis, we need more tests.
The first one was a bone density scan. I had one a year ago when we first tried the Prednisone and at that time it was fine. This one, not so much. My bone denisty has decreased enough that they call it "significant" and diagnose me as "osteopenic" which can lead up to osteoporosis. The solution? more drugs! At my next appointment we'll discuss what kind of bone-building medication to start and what kind of super-calcium/vitamin D supplement I need to go on. The other recommendation is regular exercise, which is not an issue, since I'm already doing that, but it does give me more incentive to do that walking and weight lifting. I don't plan to break a hip!
The second test was a new CT scan, for which I'm still waiting on the results. My plan is that this report will say "Oh everything looks good, the Prednisone started the job and the TNF drugs will just finish it up and you'll soon be in remission!" That's my plan anyway.
Sunday, March 14, 2010
Prednisone is very evil
I am considering what breathing is worth.
Prednisone is a useful drug, but the side effects are now dipping into the ridiculous and I'm not sure what they are worth. I like breathing. Frankly, it is rather important to me! However, the heart thing is getting scary.
Last week I scared myself and a room full of people when my heart suddenly started racing so fast that I turned beat red, couldn't breathe and began shaking uncontrollably. It wasn't fun. Until this happened, I never really got how bad a racy pulse can make you feel. It lasts for hours!
The next day at my cardiologist appointment she said what has happened is the Prednisone has triggered something called Supraventricular Tachychardia (SVT). Basically, the electrical wiring in my heart is haywire and can set off the racing and pulse when I get upset or, really, at anytime. Until now, I only had the racing heart at night, and it would stop after a little while. The SVT lasts a very long time and makes you feel kind of sick after.
The doctor says we just wait and see if it starts happening more often. It is not dangerous, unless it does happen all the time or won't stop. And of course, there is a medication for it, yippee. The alternative in some cases is a small operation where they remove a tiny piece of the heart muscle where the tachychardia is starting. NOT happening.
For most people, triggers can be caffeine or alcohol and cutting those out really helps. In my case, it's Prednisone and stopping that is not an option yet. Though we did drop my dose a little, so I'm headed in the right direction! I still have months to go, though, so this is just one more side effect to deal with.
I'm determined to get the Sarcoid into remission and get on with my life. But there are weeks like this when I wonder if it is really worth it.
Prednisone is a useful drug, but the side effects are now dipping into the ridiculous and I'm not sure what they are worth. I like breathing. Frankly, it is rather important to me! However, the heart thing is getting scary.
Last week I scared myself and a room full of people when my heart suddenly started racing so fast that I turned beat red, couldn't breathe and began shaking uncontrollably. It wasn't fun. Until this happened, I never really got how bad a racy pulse can make you feel. It lasts for hours!
The next day at my cardiologist appointment she said what has happened is the Prednisone has triggered something called Supraventricular Tachychardia (SVT). Basically, the electrical wiring in my heart is haywire and can set off the racing and pulse when I get upset or, really, at anytime. Until now, I only had the racing heart at night, and it would stop after a little while. The SVT lasts a very long time and makes you feel kind of sick after.
The doctor says we just wait and see if it starts happening more often. It is not dangerous, unless it does happen all the time or won't stop. And of course, there is a medication for it, yippee. The alternative in some cases is a small operation where they remove a tiny piece of the heart muscle where the tachychardia is starting. NOT happening.
For most people, triggers can be caffeine or alcohol and cutting those out really helps. In my case, it's Prednisone and stopping that is not an option yet. Though we did drop my dose a little, so I'm headed in the right direction! I still have months to go, though, so this is just one more side effect to deal with.
I'm determined to get the Sarcoid into remission and get on with my life. But there are weeks like this when I wonder if it is really worth it.
Sunday, March 7, 2010
Prednisone is evil
For the past several weeks I've been trying to figure out why my blood pressure has been so high recently and why my heart races in the middle of the night, and why my chest hurts most of the time. My family history is riddled with heart disease, so my big fear was that 20 years of vegan diet and exercise had failed me yet again and that my heart was bad!
The pulmonologist sent me to the cardiologist for tests. The Nuclear Stress Test was first, and that showed no blockages. Thank goodness.
The next tests were an EKG and ultrasound to check for fluid build-up around my heart (pericarditis) or evidence that the Sarcoid had invaded my heart. For some reason, waiting on this test had me more stressed out than anything in a long time. I just couldn't stand the thought that yet another part of my body was failing me, or that I'd somehow done something long ago that damaged my heart.
My visit last week to my oncologist didn't help this. His only issues with me were that my white cell count was too high, my blood pressure was too high, I'd lost a lot of weight, and my lungs sounded terrible. The cancer is still in remission, but the Sarcoid is definitely not.
I had the tests last Thursday, and everything was fine, though the cardiologist still didn't like my blood pressure or pulse. Conclusion? Not pericarditis or more Sarcoid, but Prednisone.
The most common side effects of Prednisone are fluid retention and weight gain and moon face. My face has definitely gone "moony", but I haven't gained the weight like last time. However, a less-common side effect is that the Prednisone messes with your heart, causing it to race, raising the blood pressure and pulse rate. Knowing this and knowing that there is an outside reason for it does help and is a huge relief given the other options I was facing last week. However, I also learned that this hypertension is by itself not healthy and we do have to get everything back to a normal range.
The cardiologist's first choice was to take me off of the Prednisone. Then she looked at what the pulmonologist sent over and agreed with him that that wasn't an option.
So, the new solution is hypertension medication. She did stop the first heart medication the pulmonologist chose, but changed it out to something else. Oh, and apparently this stuff has its own side effects so she wants to monitor me closely for awhile to be sure the new medication isn't causing any other problems. More time in the doctor's office. Great.
I am now on 11 different medications and vitamins. 3 are just to counter-act the side effects from the Prednisone. I counted.
Prednisone is evil; but for now, I do like breathing; so I suppose it is a necessary evil.
The pulmonologist sent me to the cardiologist for tests. The Nuclear Stress Test was first, and that showed no blockages. Thank goodness.
The next tests were an EKG and ultrasound to check for fluid build-up around my heart (pericarditis) or evidence that the Sarcoid had invaded my heart. For some reason, waiting on this test had me more stressed out than anything in a long time. I just couldn't stand the thought that yet another part of my body was failing me, or that I'd somehow done something long ago that damaged my heart.
My visit last week to my oncologist didn't help this. His only issues with me were that my white cell count was too high, my blood pressure was too high, I'd lost a lot of weight, and my lungs sounded terrible. The cancer is still in remission, but the Sarcoid is definitely not.
I had the tests last Thursday, and everything was fine, though the cardiologist still didn't like my blood pressure or pulse. Conclusion? Not pericarditis or more Sarcoid, but Prednisone.
The most common side effects of Prednisone are fluid retention and weight gain and moon face. My face has definitely gone "moony", but I haven't gained the weight like last time. However, a less-common side effect is that the Prednisone messes with your heart, causing it to race, raising the blood pressure and pulse rate. Knowing this and knowing that there is an outside reason for it does help and is a huge relief given the other options I was facing last week. However, I also learned that this hypertension is by itself not healthy and we do have to get everything back to a normal range.
The cardiologist's first choice was to take me off of the Prednisone. Then she looked at what the pulmonologist sent over and agreed with him that that wasn't an option.
So, the new solution is hypertension medication. She did stop the first heart medication the pulmonologist chose, but changed it out to something else. Oh, and apparently this stuff has its own side effects so she wants to monitor me closely for awhile to be sure the new medication isn't causing any other problems. More time in the doctor's office. Great.
I am now on 11 different medications and vitamins. 3 are just to counter-act the side effects from the Prednisone. I counted.
Prednisone is evil; but for now, I do like breathing; so I suppose it is a necessary evil.
Thursday, February 25, 2010
The Nuclear Stress Test
Sounds like something that NASA would do. But, in the event you find yourself in an office with a cardiologist, and they mention one of these, it means they are looking for arterial blockages of the heart. The nuclear stress test allows the doctor a clear view of all areas of the heart where blockages might occur. I also learned that they use this test to review stents and valve repairs to be sure they are still working.
Before you go, you'll fast for at least 6 hours and have no caffeine in your system for at least 24 hours. So expect to have a headache and be hungry. And, if you take a beta blocker or other heart medication, you skip those; though prednisone is ok.
1. The first step is to put in an IV line, then they inject you with a radioactive isotope that will help highlight all of the arteries and veins of the heart when they do the imaging.
2. Wait
3. The first image takes about 10 minutes. You sit in a big chair with your arms elevated and stay very still as the chair rotates and the images are taken.
4. Wait
5. Treadmill test. They place a bunch of monitors on and watch your blood pressure as you walk on flat and hilly surfaces.
6. Second injection of radioactive isotope.
7. Wait
8. Second set of images. This is done in about 3 minutes, but same as #3.
9. Wait
10. Get preliminary results from the doctor.
In my case I also had to make a second appointment for an EKG and ultrasound because my heart decided to be funky during the treadmill test. Will learn more on this later.
In the interim, no blockages, so that's good! My husband was quite relieved, because I warned him that if 20+ years of vegan diet and exercise and low weight ended up with heart blockages, there would be much yelling and screaming happening.
I'm not happy about having to go back. But, I am trying to just take this stuff one step at a time. The Sarcoid thing is difficult and sometimes scary, but I'll just keep living my life and throwing in the doctor appointments as I have to.
Thursday, February 11, 2010
Understanding Sarcoidosis and Dealing with the Treatment
As my treatment plan has continued, I've been trying to better understand Sarcoidosis and to get a sense of how long I'll be dealing with this disease. The problem, I've found, is that so little is really known about Sarcoid that getting clear information is difficult. Even my doctors, who are knowledgeable about treating the disease, are always careful to say that the treatment plan is based on trial and error because there is no clear undertstanding of either why people get this disease or how to effectively treat it across the board.
Yesterday I had my checkup with the pulmonologist. For part of the appointment we spent time going through one recent article from The Cleveland Clinic, that gives perhaps the clearest overview possible of Sarcoidosis and what I'm dealing with. The article reviews all of the current understanding of Sarcoid and addresses directly the fact that so little is yet known. Despite all the unkowns, it was helpful to read something that at least addressed the disease systematically and explained what is happening. The article is available at http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/sarcoidosis/
After we reviewed the disease, we reviewed how I'm doing on the high-dose steroids. My doctor thinks it is starting to work, I'm definitley coughing less. So, he wants to keep me on the high doses for another 2 months. Yikes.
The problem, though, is that the steroids have their own side effects. While I'm not getting the classic weight gain or moon face this time, I have developed some issues with my heart that kind of make me wish for moon face! They are not so bad that I have to stop the steroid, but we do have to add one more pill to help my heart deal with the steroid. And, because I have a famly history that is riddled with heart disease, he wants a cardiologist to look at me again just to be sure no permanent damage is going on. So, one more pill, one more doctor.
My last question for the doctor yesterday was, "Am I going to have to live like this forever, or will I get better someday?" He promises I'll get better. I'm holding him to that promise and praying for sooner rather than later.
Yesterday I had my checkup with the pulmonologist. For part of the appointment we spent time going through one recent article from The Cleveland Clinic, that gives perhaps the clearest overview possible of Sarcoidosis and what I'm dealing with. The article reviews all of the current understanding of Sarcoid and addresses directly the fact that so little is yet known. Despite all the unkowns, it was helpful to read something that at least addressed the disease systematically and explained what is happening. The article is available at http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/pulmonary/sarcoidosis/
After we reviewed the disease, we reviewed how I'm doing on the high-dose steroids. My doctor thinks it is starting to work, I'm definitley coughing less. So, he wants to keep me on the high doses for another 2 months. Yikes.
The problem, though, is that the steroids have their own side effects. While I'm not getting the classic weight gain or moon face this time, I have developed some issues with my heart that kind of make me wish for moon face! They are not so bad that I have to stop the steroid, but we do have to add one more pill to help my heart deal with the steroid. And, because I have a famly history that is riddled with heart disease, he wants a cardiologist to look at me again just to be sure no permanent damage is going on. So, one more pill, one more doctor.
My last question for the doctor yesterday was, "Am I going to have to live like this forever, or will I get better someday?" He promises I'll get better. I'm holding him to that promise and praying for sooner rather than later.
Wednesday, January 13, 2010
Not Working
A month into the new treatment plan and it is not working like it should. So, when steroids aren't working, the course is to simply increase them. So up a bunch more every day for a month and then see how it is going. My poor husband...
In the mean time, we have to add some medication to help the mess that my stomach has become from the steroids, and I may need to have some tests done on my esophagus because swallowing seems to be problematic; yet another sarcoid issue no one told me about.
Yes, I'm being whiny and I know it. And I do have some perspective, it is just that it all seems like too much some days. I have one friend who is still in treatment for Lymphoma and another who just got out of the hospital, again, whose body seems to be trying to defeat her at every turn. I'm trying to help my mom, who is helping her friend who has breast cancer and can't face the reality of treatment at all. And tonight I have a call with the friend of a friend who was recently diagnosed with breast cancer and is dealing with her diagnosis and wading through the myriad treatments and doctors that she is facing.
And then there are the hundreds of thousands of people in Haiti.
Some days I seek strength and wonder where and how to find it when everything I see just seems so overwhelming.
In the mean time, we have to add some medication to help the mess that my stomach has become from the steroids, and I may need to have some tests done on my esophagus because swallowing seems to be problematic; yet another sarcoid issue no one told me about.
Yes, I'm being whiny and I know it. And I do have some perspective, it is just that it all seems like too much some days. I have one friend who is still in treatment for Lymphoma and another who just got out of the hospital, again, whose body seems to be trying to defeat her at every turn. I'm trying to help my mom, who is helping her friend who has breast cancer and can't face the reality of treatment at all. And tonight I have a call with the friend of a friend who was recently diagnosed with breast cancer and is dealing with her diagnosis and wading through the myriad treatments and doctors that she is facing.
And then there are the hundreds of thousands of people in Haiti.
Some days I seek strength and wonder where and how to find it when everything I see just seems so overwhelming.
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