Thursday, June 23, 2011
Frustrated tears
"Hello Mrs. Lee, I spoke to the doctor and gave him your message. He says you can up the steroids to better manage your pain as long as your tuberculosis doctor says it's ok."
Saturday, May 14, 2011
You've got to be kidding
2 weeks ago my doctor called. I should have hung up on him. He called to tell me that the TB Gold test he'd thrown in "just in case" because I'm due to start a new TNF drug in July, came back positive. He was so nice about it. He'd already talked to my pulmonologist and gotten me a referral to an infectious disease specialist. And he felt bad about it, "You just can't seem to catch a break."
Tuberculosis? Seriously? Try that in a conversation, "Oh yes, my doctor called and it turns out I have Tuberculosis." Trust me, there will be a long pause before anything more is said!
So, I met with the infectious diseases doctor. She says it is Latent TB. Which means I'm not contagious. I have to preface with this to anyone who asks. NO, I can't give you TB. But, it is dangerous to me in that it could become active and since I'm still scheduled to start the TNF drug, which will kill off most of my immune system, it is important that I start treatment now.
Before we get to that, though, the first question that had to be answered was "How did you get this?" TB is pretty difficult to contract. You have to be in close contact with someone who has active TB. Usually people get it when traveling to countries that have a TB epidemic or if they have a suppressed immune system and are working in a hospital where there are TB patients. For me, it was none of those things. I got it because I help refugees.
Because of my work with the refugees, I know quite a lot about TB and Latent TB. Many of the folks I work with have Latent TB, and for the past few years I've accompanied them to appointments at the Refugee Clinic or the County Hospital. So answering the question wasn't difficult.
I got it because I keep working with the refugees while being treated for Sarcoid.
OK then, the next step was a chest x-ray to see if there was any lung involvement. For most people this is straightforward. Get a chest X-ray. If it's clear you have Latent TB, start the pills. If it's not clear then you have active TB and you need to start that treatment. In my case, it took several calls between doctors to decide what of the crap on my lungs was Sarcoid and what might or might not be TB. They decided to go with all of it is Sarcoid. Thank goodness for small blessings.
So now I'm on Isoniazid. This is the standard antibiotic treatment for Latent TB. 9 months with monthly check-ins to be sure the drug doesn't give me Hepatitis or liver failure.
Add it to the list. On the up side, between the TB drug and the Malaria drug, if I ever have a chance to go on a tropical vacation, I'm set!
The more difficult part of all of this is deciding what to do about my refugees. Both the infectious diseases doctor and my rheumetologist have told me not to go to any more clinics or hospitals. My immune system can't take it. There is also the realization (ok, whack to the head) that my work is making me sicker and that it has real consequences. What to do about this is more difficult. I haven't made any decisions yet, and frankly, I don't know what to do.
Tuberculosis? Seriously? Try that in a conversation, "Oh yes, my doctor called and it turns out I have Tuberculosis." Trust me, there will be a long pause before anything more is said!
So, I met with the infectious diseases doctor. She says it is Latent TB. Which means I'm not contagious. I have to preface with this to anyone who asks. NO, I can't give you TB. But, it is dangerous to me in that it could become active and since I'm still scheduled to start the TNF drug, which will kill off most of my immune system, it is important that I start treatment now.
Before we get to that, though, the first question that had to be answered was "How did you get this?" TB is pretty difficult to contract. You have to be in close contact with someone who has active TB. Usually people get it when traveling to countries that have a TB epidemic or if they have a suppressed immune system and are working in a hospital where there are TB patients. For me, it was none of those things. I got it because I help refugees.
Because of my work with the refugees, I know quite a lot about TB and Latent TB. Many of the folks I work with have Latent TB, and for the past few years I've accompanied them to appointments at the Refugee Clinic or the County Hospital. So answering the question wasn't difficult.
I got it because I keep working with the refugees while being treated for Sarcoid.
OK then, the next step was a chest x-ray to see if there was any lung involvement. For most people this is straightforward. Get a chest X-ray. If it's clear you have Latent TB, start the pills. If it's not clear then you have active TB and you need to start that treatment. In my case, it took several calls between doctors to decide what of the crap on my lungs was Sarcoid and what might or might not be TB. They decided to go with all of it is Sarcoid. Thank goodness for small blessings.
So now I'm on Isoniazid. This is the standard antibiotic treatment for Latent TB. 9 months with monthly check-ins to be sure the drug doesn't give me Hepatitis or liver failure.
Add it to the list. On the up side, between the TB drug and the Malaria drug, if I ever have a chance to go on a tropical vacation, I'm set!
The more difficult part of all of this is deciding what to do about my refugees. Both the infectious diseases doctor and my rheumetologist have told me not to go to any more clinics or hospitals. My immune system can't take it. There is also the realization (ok, whack to the head) that my work is making me sicker and that it has real consequences. What to do about this is more difficult. I haven't made any decisions yet, and frankly, I don't know what to do.
Thursday, April 14, 2011
Trial and Error
Next time I'm getting a better funded disease. That's the one thing I can say about breast cancer, there are very few mysteries about what to do. Once a diagnosis is made, there are set protocols to follow. They generally suck during the treatment, but they do work for many many women.
Sarcoid, on the other hand, is complete guesswork. Over the past 2 years I have been on 2 different chemo drugs, 1 TNF drug, mounds and mounds of steroids, sleeping pills, bone stengthening infusions and heart medication to combat side effects of the mounds of steroids, and now a malaria drug.
With the exception of the steroids, which damaged my heart, bones, skin and sanity, nothing has helped. And, to be clear, none of the drugs I've taken are specifically for Sarcoid.
There are no drugs (besides the steroids) that are approved for Sarcoid. Why? too few people have it so there are no research $$ for it. There are a few doctors and clinics that are trying, but because the stupid disease manifests differently in everyone, what works for "most" doesn't work for all. And so far, none has worked for me.
So, back to the drawing board, and the steroids. The new plan is to fill me up with steroids for a few months at a level that hopefully will leave my heart, skin and bones alone. We'll continue the malaria drug while doing that, then add a new TNF drug on top of all of that after I have enough steroids in me so my body won't reject the new drug. The new drug will be 2-hour infusions every 6-8 weeks for a few years; if it works. And of course, the steroids.
The goal is that I will not feel like I've been hit by a truck every day, that I'll have enough energy to exercise again, that I won't cough and hack all day, and that I'll be able to finish a thought without having to gasp for breath. Of course, that's been the goal all along, hasn't it.
Sunday, November 14, 2010
Post-October
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.
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.
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.
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