I broke down and called my rheumatologist's office yesterday about the bump on my arm (not on a log). The problem was who to talk to.
The nurse practitioner I saw a couple of weeks ago is on vacation.
The rheumatologist I saw first left and I have not yet met with my new rheumatologist
I ended up talking to the physician's assistant who has never met me. We will meet on Thursday afternoon.
He did tell me it sounds like a rheumatoid nodule - I said that I am rheumatoid factor negative and statistics say I should not be getting nodules. But I did switch to injectable methotrexate which could be what caused it so I might need to switch medications. But with my medical history I can't take a lot of them.
He did also say it could be a ganglion cyst which could be drained or removed. Oh but since its my lymphedema arm there may not be any treatment options for me.
Which means I may be SOL. Crap.
I am focusing on this because I am ignoring next week's assorted tests that I would prefer not to think about.
If its not one thing, its another
Friday I noticed a little bump on the side of my wrist that appears to be on the end of one of the bones in my lower arm. It is solid and hurts. I had noticed some previous pain in the area but since I always have pain somewhere, I didn't really think about it.
Its about the size of a pea and might have gotten a little bigger this weekend. I have no idea what it is. I did contemplate that evil cancer word for a few moments. Dr Google told me it would be very unlikely to be any kind of cancer.
I have often been asked by my doctors if when I had my last flare and my response is I don't know because I am not sure if I have had one or not. I think that doctors assume that once you are diagnosed with RA that you will have flares immediately. But I never really knew what a flare was. Apparently its lots of aches and pains, head aches and all sorts of fun. I feel like that a lot of the time.
Yesterday afternoon, I went online and asked a friend with RA about my little lump. She said it sounds like an RA nodule. I thought nodules didn't hurt. She said hers did when they first appeared. She said they come and go for her. I am (not) overjoyed.
I did a little online research (because Dr Google always knows more) and found out that injectable methotrexate has the dubious side effect of causing more RA nodules. So two days after my first injection, I get a nodule. I will call my rheumatologist's office this morning and ask if this is something that I should be concerned about.
The problem is I can't take most of the other organic injectables because of my medical history (blah, blah, blah). So am I stuck with more RA nodules as a result? Crap. But its not cancer so I will think some positive thoughts and give evil looks to the little bump.
Its about the size of a pea and might have gotten a little bigger this weekend. I have no idea what it is. I did contemplate that evil cancer word for a few moments. Dr Google told me it would be very unlikely to be any kind of cancer.
I have often been asked by my doctors if when I had my last flare and my response is I don't know because I am not sure if I have had one or not. I think that doctors assume that once you are diagnosed with RA that you will have flares immediately. But I never really knew what a flare was. Apparently its lots of aches and pains, head aches and all sorts of fun. I feel like that a lot of the time.
Yesterday afternoon, I went online and asked a friend with RA about my little lump. She said it sounds like an RA nodule. I thought nodules didn't hurt. She said hers did when they first appeared. She said they come and go for her. I am (not) overjoyed.
I did a little online research (because Dr Google always knows more) and found out that injectable methotrexate has the dubious side effect of causing more RA nodules. So two days after my first injection, I get a nodule. I will call my rheumatologist's office this morning and ask if this is something that I should be concerned about.
The problem is I can't take most of the other organic injectables because of my medical history (blah, blah, blah). So am I stuck with more RA nodules as a result? Crap. But its not cancer so I will think some positive thoughts and give evil looks to the little bump.
Meet my oncologist and her cookbook
When I was first diagnosed with breast cancer I had an oncologist who I really liked. He was nice and would explain numbers and statistics to me and give me detailed explanations on treatment options and why he chose one over the other.
At the end of my active treatment phase, he left. He was not given permission for this and I was upset. One big trauma point for cancer patients is when the active treatment portion ends and the come back and see us in six months starts. They go from caring about every sniffle to 'see-ya!'.
I was pretty stressed about the change and did not know what to expect from my new oncologist. But I was pleasantly surprised to find out how nice, compassionate and caring my new oncologist was. Over the past five years I have gotten to know her more. I have seen her speak at events as well as met with her individually.
Now I learned something more about her. She, along with other doctors, has written a cookbook for cancer patients. Now I have to get a copy of it. It is a book for people in active treatment. Its not that I am planning to go back into active treatment but I am a cookbook junkie and I am sure it will be full of good, healthy recipes.
If you are looking for a new oncologist in the Boston area, I do recommend her.
At the end of my active treatment phase, he left. He was not given permission for this and I was upset. One big trauma point for cancer patients is when the active treatment portion ends and the come back and see us in six months starts. They go from caring about every sniffle to 'see-ya!'.
I was pretty stressed about the change and did not know what to expect from my new oncologist. But I was pleasantly surprised to find out how nice, compassionate and caring my new oncologist was. Over the past five years I have gotten to know her more. I have seen her speak at events as well as met with her individually.
Now I learned something more about her. She, along with other doctors, has written a cookbook for cancer patients. Now I have to get a copy of it. It is a book for people in active treatment. Its not that I am planning to go back into active treatment but I am a cookbook junkie and I am sure it will be full of good, healthy recipes.
If you are looking for a new oncologist in the Boston area, I do recommend her.
I do have a healthy body part
Yesterday was a relatively normal day in my life. I went to Costco, went for a walk, and then got my nails done. Aren't I exciting?
Later at the salon they had a special client appreciation event where they did hair treatments, make up, had a pop up store for consignment clothes, food, awesome fruit punch (with a bottle of Absolut on the side but I did not partake).
While I was getting my nails done, they were setting up the popup store - note to the woman in a blue dress: while your dress may be vintage and pretty, it was not appropriate for setting up racks (we did see your underwear THREE TIMES) and I believe it (the dress not the underwear) was on backwards. It was loud and ended up being fun.
Then I got my make up done. I will probably go back and buy some of it because it stayed on, was not uncomfortable, and made me look better. Or maybe I should just start wearing the make up I already own.
But then I got to the good part where they found a healthy body part. My last visit was to get a conditioning hair treatment. One woman was designated as the technician who would do the treatment but another woman figured out which level of treatment my hair needed. Both of them said 'oh her hair is wonderful, its so healthy', I was over joyed as it means I have a healthy body part. Then another woman had to feel my hair and another. They all thought I had the healthiest hair and talked about it as if I wasn't there.
The woman featuring the hair product line they were promoting, thought my hair was so wonderful as well it barely needed any treatment.
I was happy. I left with my nails done. I was wearing natural make up so I looked good. And I had the softest, healthiest hair in town. So I have a healthy body part.
Later at the salon they had a special client appreciation event where they did hair treatments, make up, had a pop up store for consignment clothes, food, awesome fruit punch (with a bottle of Absolut on the side but I did not partake).
While I was getting my nails done, they were setting up the popup store - note to the woman in a blue dress: while your dress may be vintage and pretty, it was not appropriate for setting up racks (we did see your underwear THREE TIMES) and I believe it (the dress not the underwear) was on backwards. It was loud and ended up being fun.
Then I got my make up done. I will probably go back and buy some of it because it stayed on, was not uncomfortable, and made me look better. Or maybe I should just start wearing the make up I already own.
But then I got to the good part where they found a healthy body part. My last visit was to get a conditioning hair treatment. One woman was designated as the technician who would do the treatment but another woman figured out which level of treatment my hair needed. Both of them said 'oh her hair is wonderful, its so healthy', I was over joyed as it means I have a healthy body part. Then another woman had to feel my hair and another. They all thought I had the healthiest hair and talked about it as if I wasn't there.
The woman featuring the hair product line they were promoting, thought my hair was so wonderful as well it barely needed any treatment.
I was happy. I left with my nails done. I was wearing natural make up so I looked good. And I had the softest, healthiest hair in town. So I have a healthy body part.
Doctors getting on the cost bandwagon
I have long been whined commented on the high price of medications. I find the high price of new medications combined with the laughable rationale given by the drug manufacturers ridiculous.
Not to put a dollar value on a human life, but a drug that costs upwards of $10,000 per month and may extend life only a few months, is crazy. You can say that few actually pay the full price but we all pay the prices in the form of higher insurance premiums.
A group of more than 100 doctors, mostly oncologists, from fifteen countries, have banded together to blast the high cost of cancer care.
"The doctors and researchers, who specialize in the potentially deadly blood cancer chronic myeloid leukemia, contend in a commentary published online by a medical journal Thursday that the prices of drugs used to treat that disease are astronomical, unsustainable, and perhaps even immoral.
Not to put a dollar value on a human life, but a drug that costs upwards of $10,000 per month and may extend life only a few months, is crazy. You can say that few actually pay the full price but we all pay the prices in the form of higher insurance premiums.
A group of more than 100 doctors, mostly oncologists, from fifteen countries, have banded together to blast the high cost of cancer care.
"The doctors and researchers, who specialize in the potentially deadly blood cancer chronic myeloid leukemia, contend in a commentary published online by a medical journal Thursday that the prices of drugs used to treat that disease are astronomical, unsustainable, and perhaps even immoral.
They suggested that charging a high price for a medicine needed to keep someone alive is profiteering, akin to jacking up the prices of essential goods after a natural disaster."
I like the word 'profiteering' for this price gouging. I mean, how do you justify these prices? If you do a cost benefit analysis as a typical business model, the company pays researchers for years to come up with the drugs. If you say 10 researchers at $100,000 (for easy math) and ten assistant researchers at $50,000 plus $500,000 in equipment for ten years, that would work out to $2 million a year or $20 million total. I know my math is not perfect but you get the idea. Even if I am off by a scale of 10 and the costs are $200 million for ten years of research.
Then take a drug that costs $10,000 per month being taken by 5000 patients that is (pause while I find a calculator) $50 million per month in income. Or in four measly months, they have made back their $200 million.
And even if my costs are off by another factor of ten and we are looking at total costs of $2 billion, they would still get their money back in forty months, or just over three years. Or if the drug is taken by 10,000 patients, they would get their money back in 20 months, or just over 1.5 years.
But I have digressed WAY OFF track. My point is I can't find any justification for the pharma industry's claims of high costs. And now the doctors are claiming them to be profiteering as well. Maybe we need a congressional inquiry - no that would be all sorts of waste of government dollars - but we do need something to make this price gouging end.
That was a bad day!
I don't like needles. You might have heard this from me before. I was very clear with my oncologist when I was diagnosed that it was not an option for me to self inject. Ever. Last week I was told that my RA is not responding to oral treatment so I need to switch to injections. I was a bit stressed.
I had no idea how stressed I was. Tuesday night I took an ativan so that I would be able to sleep and reduce some stress. Yesterday morning we had the teaching lesson with the nurse to learn how to self inject.
I woke up with hives, a knot in my stomach, and extreme stress. Hives? That was a bit extreme. I have only had hives from allergic reactions before. I might have been a bit whiney as well. Only a slim possibility of that. I even took half an ativan to help me cope.
My husband went with me as he was the mere 'learnee' and I was the mere patient in this. We got there on time and had to sit in the waiting room where my husband's hand got a bit squished (only a tiny bit). And we waited. So I stressed some more.
Finally the nurse came to get us. I was very nervous and told the nurse - there is no point in being nervous if you can't tell everyone about it. She said it was good to be nervous as that meant I cared about my health and was taking it seriously which is a good thing. It may have been a good thing but it didn't make it easier.
My husband learned out to put on the gloves, swab off my skin, fill the needle, etc. I got to ask stupid questions and be an idiot because I was nervous. I even cowered when the put the fake fat pad against my arm for my husband to pretend to inject me. I cowered again when he really did inject me.
There was a little pinch and it did burn a little. But I survived. I think.
I left to go to work and my husband went to his other doctor appointment. My stomach started to unclench. My hives itched a little less. But I felt better. It was over. Until next week when we go through it again with out a nurse to help. Crap.
I had no idea how stressed I was. Tuesday night I took an ativan so that I would be able to sleep and reduce some stress. Yesterday morning we had the teaching lesson with the nurse to learn how to self inject.
I woke up with hives, a knot in my stomach, and extreme stress. Hives? That was a bit extreme. I have only had hives from allergic reactions before. I might have been a bit whiney as well. Only a slim possibility of that. I even took half an ativan to help me cope.
My husband went with me as he was the mere 'learnee' and I was the mere patient in this. We got there on time and had to sit in the waiting room where my husband's hand got a bit squished (only a tiny bit). And we waited. So I stressed some more.
Finally the nurse came to get us. I was very nervous and told the nurse - there is no point in being nervous if you can't tell everyone about it. She said it was good to be nervous as that meant I cared about my health and was taking it seriously which is a good thing. It may have been a good thing but it didn't make it easier.
My husband learned out to put on the gloves, swab off my skin, fill the needle, etc. I got to ask stupid questions and be an idiot because I was nervous. I even cowered when the put the fake fat pad against my arm for my husband to pretend to inject me. I cowered again when he really did inject me.
There was a little pinch and it did burn a little. But I survived. I think.
I left to go to work and my husband went to his other doctor appointment. My stomach started to unclench. My hives itched a little less. But I felt better. It was over. Until next week when we go through it again with out a nurse to help. Crap.
If you don't have your health, what have you got?
Some of us look at the rich and famous, the Hollywood stars, and others and think they have it all. Beauty, riches, and fame seem to be everything.
But they are wrong. If you don't have your health, what do you have? Sofia Vergara had thyroid cancer 12 years ago. A recent article about her provides her reactions to thyroid cancer diagnosis and treatment.
"She said that you realize that no matter how much beauty, money, and success you have, if you don't have health, you have nothing, because you can't do anything."
Personally I think I am as healthy as a horse on the way to the glue factory.
It only took Sofia 12 years from her cancer diagnosis to be able to sum this up in one sentence and she may have gotten there sooner. I am a little slow. It probably took me a long longer to be able to react to a cancer diagnosis in the same way.
But if you think about it, one of our fundamental reactions to a cancer diagnosis, I think, is that we have lost our health because we are now told we have a potentially terminal ailment. So what else do we have? That is where we need to figure out so we can adapt and get back to living.
But they are wrong. If you don't have your health, what do you have? Sofia Vergara had thyroid cancer 12 years ago. A recent article about her provides her reactions to thyroid cancer diagnosis and treatment.
"She said that you realize that no matter how much beauty, money, and success you have, if you don't have health, you have nothing, because you can't do anything."
Personally I think I am as healthy as a horse on the way to the glue factory.
It only took Sofia 12 years from her cancer diagnosis to be able to sum this up in one sentence and she may have gotten there sooner. I am a little slow. It probably took me a long longer to be able to react to a cancer diagnosis in the same way.
But if you think about it, one of our fundamental reactions to a cancer diagnosis, I think, is that we have lost our health because we are now told we have a potentially terminal ailment. So what else do we have? That is where we need to figure out so we can adapt and get back to living.
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