Its never too late
 Its never too late and never give up. This is a wonderful story o a woman with terminal leukemia, with a short time to live. But it was still not too late to get married, in the hospital with the chaplain. Cancer may take many things from people but it can't take away all our dreams (Source: Caroline's Breast Cancer Blog)
Source: Caroline's Breast Cancer Blog - March 17, 2013 Category: Cancer Tags: dreams hope love Source Type: blogs

The backstory
We have all see this video that went viral about six months ago. At the hematology clinic in a Seattle hospital, they rocked it out to Kelly Clarkson's "Stronger". There are all sorts of videos that go viral. But we usually never really know why they were made, who made them, or anything else. They are just a video we share and laugh at or with.  But this time I found out the backstory to this one. A hockey playing college student spent six months in chemo and helped make the first video.I think knowing his story gives even more power to the video. We know the context that he was a patient as well and worked...
Source: Caroline's Breast Cancer Blog - March 1, 2013 Category: Cancer Tags: young cancer patients story being a patient Source Type: blogs

Chemo again or just semantics?
I have been emailing back and forth with a friend with whom I had lost touch. His wife had died a few years ago of pancreatic cancer.  I told him that I had RA which is why I haven't been around as much recently. He replied that he has a friend who is on methotrexate - which is a form of chemo  for their RA.Eeek! I had not considered that Methotrexate was a form of chemo. I take it in pill form weekly so its not like I go for an infusion or anything. I looked it up on Scott Hamilton's Chemocare.com and found out its true. The thought of being on chemo again had always freaked me out. I mean who wants a port, bald...
Source: Caroline's Breast Cancer Blog - February 28, 2013 Category: Cancer Tags: chemotherapy semantics medical treatment Source Type: blogs

Another Giant Storm
I am very intrigued by how winter storms are now named. I did read some semi logical government rationale (is that an oxymoron - semi logical government rationale?) Nemo brought us a (whopping big) pile of snow. Q was somewhat mysterious - just like in a Bond film. Rocky is just rocking along with snow and rain. If we are already up to R and its only February, we might even run out of letters - what does the oh-so-smart government do then? Switch to the Greek alphabet?All these giant storms could be doing lots of things:relieving drought in the south, central and western states. Maybe this will be a year where the rare des...
Source: Caroline's Breast Cancer Blog - February 27, 2013 Category: Cancer Tags: weather snow storm Source Type: blogs

We need to make a switch
I think we, as in my husband and I, should officially switch to the Mediterranean diet. There is more research (because the researchers need to keep busy) showing the benefits of it.Good things in the Mediterranean diet are olive oil, tree nuts and peanuts, fresh fruits, vegetables, fatty fish and seafood, legumes, white meat, and wine with meals. This to avoid are soda, commercial bakery goods, sweets and pastries, spread fats, and red and processed meats.Therein lies the problem. My husband is Mr. Steak and Potatoes.He would happily eat beef every night. I will have to work on this. And the other problem is I'm supposed ...
Source: Caroline's Breast Cancer Blog - February 26, 2013 Category: Cancer Tags: diet health food Source Type: blogs

A Lull in the Action
Yes I am enjoying a lull in the action. The action of doctor appointments that is.I have one (yes, one, singular, 1) doctor appointment in the entire month of March. I have one (again, one, 1, solo) doctor appointment in the entire month of April. And both of those are appointments with my therapist so the odds of my needing to change into one of those little gowns are extremely slim (and they make such a fashion statement).What shall I do with my time? I mean besides keep up with my blog. I'll have so much free time!Daily naps would be a good option. I can use that since I get so tired these days. More exercise Doubtful b...
Source: Caroline's Breast Cancer Blog - February 25, 2013 Category: Cancer Tags: nap time doctor appointments Source Type: blogs

Secrets of medical costs
Someone referred me to this article which I read with great interest. First I started with this video: Then I read the article called the "Bitter Pill: Why Medical Costs are Killing Us"FInally I watched the second video where the writer answers questions on reactions to this story:So where does all t his education leave me? I am not as smart as I thought I was.All along I was blaming high medical costs on pharmaceutical manufacturers who were passing on the research costs long after they were paid to the patients through high drug payments. I was blaming insurance companies for high insurance premiums, denial of ...
Source: Caroline's Breast Cancer Blog - February 24, 2013 Category: Cancer Tags: hospital medical costs billing Source Type: blogs

New Breast Cancer Drug but at What Cost
The FDA approved Kadcyla for late stage breast cancer treatment. This is a good thing. Its about time.  And it will save many women's lives.But I have a real problem with the financials behind it. A month's treatment costs $9800 or $117,600 annually, which apparently is about twice the costs of Herceptin. These costs will mostly be covered by insurance - and we wonder why insurance premiums are going up.Immunogen, who developed it, expects to receive a $10.5 million pay off plus royalties of 3-5% of the expected world wide sales of $2 billion (with a b). To my tiny math brain, that means they get $60,000,000 (that's 6...
Source: Caroline's Breast Cancer Blog - February 23, 2013 Category: Cancer Tags: insurance costs medical news cynicism breast cancer treatment medication costs Source Type: blogs

Fibro what?
So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medica...
Source: Caroline's Breast Cancer Blog - February 22, 2013 Category: Cancer Tags: symptoms fibromyalgia medication pain treatment Source Type: blogs

Life is a verb
Every week at work, we get take out for lunch. Its our little splurge and relieves lunch boredom. We don't get anything fancy - any local restaurant will do from salads, pizza, Chinese, Vietnamese, deli, etc. Each week we start our little discussion on where to get lunch around 830am. Some people think that is a little early to start thinking about what I consider to be the best part of the workday, but some of us think that's right on time.Our current favorite is a little Vietnamese place. We each have a favorite dish. And it comes with fortune cookies. Go figure. I didn't think the had Chinese fortune cookies in China, l...
Source: Caroline's Breast Cancer Blog - February 21, 2013 Category: Cancer Tags: gym life exercise pain Source Type: blogs

You can't talk the talk, if you haven't walked the walk.
While I greatly appreciate the efforts of doctors, researchers, nurses, clinicians, and other medical professionals, my feelings have always been that you can't talk the talk, if you haven't walked the walk. You will not 'get it'. Sorry.A support group facilitator who has not had the ailment being supported, will never, no matter the training, years of leading the group, and any other efforts, will never 'get it'. I'm sorry.One of the reasons I like my therapist so much is that not only has she had breast cancer, she also has a type of arthritis. She understands. My medical oncologist comes close to understanding as she ha...
Source: Caroline's Breast Cancer Blog - February 20, 2013 Category: Cancer Tags: doctors cancer treatment being a patient Source Type: blogs

Once Burned, Twice Shy
When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?' After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked a...
Source: Caroline's Breast Cancer Blog - February 19, 2013 Category: Cancer Tags: sharing fibromyalgia labels cancer rheumatoid arthritis Source Type: blogs

Another government report
There was a big interagency report released this week on breast cancer. This was the result of a requirement by a 2004 Act of Congress requiring Health and Human Services (and the creation of an alphabet soup agency - IBCERCC) to review "the current state of breast cancer and the environment research and make recommendations for eliminating any knowledge gaps in this area."You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Her...
Source: Caroline's Breast Cancer Blog - February 18, 2013 Category: Cancer Tags: breast cancer sharing medical research Source Type: blogs

We got the message
Some friends of mine are both having significant birthdays last month and next month so I wanted to have them over for brunch to celebrate. But some things are evidently just not meant to be.The brunch was scheduled with much too-ing and fro-ing, balancing ten people's schedules and we finally settled on today at 11am. Then we had windows installed in three rooms of our house. Which took longer than expected. We planned to spend last weekend peeling wallpaper and painting.But it snowed so we shoveled snow instead.The entire contents of my husband's home office is in the dining room. We peeled wall paper every night this we...
Source: Caroline's Breast Cancer Blog - February 17, 2013 Category: Cancer Tags: fun friends Source Type: blogs

Are we empowered yet?
This has been a hot topic for years now, patient empowerment. Do you really know what it is? I found a definition on Navigating Cancer this says:"Patient Empowerment involves active participation by the patient working in partnership with a healthcare team to receive the best care.Patient empowerment begins with leaning about one’s own illness or condition, and participating in treatment decisions. It continues as a process, first by keeping a full and comprehensive record of one’s own medical history. Diagnosis, treatments, and medications are tracked by the patient, as well as symptoms and treatment side...
Source: Caroline's Breast Cancer Blog - February 16, 2013 Category: Cancer Tags: empowered patient being a patient Source Type: blogs

Cutting back
In the past several months, I find I run out of steam between my two jobs, home life, social life, etc. I decided I needed to cut back on life - to allow more down time, naps, and sleeping in general.Five years ago, I was happy to expand my life to add more work and do more things. That was great. I was through cancer treatment and feeling good and we even took a vacation to Acadia National Park for hiking and biking.Then I had my gall bladder out and my back pains started. Now my gall bladder is healed and my back pains have a treatment plan so they are usually under control. unless I do things like stand, walk, sit, or l...
Source: Caroline's Breast Cancer Blog - February 15, 2013 Category: Cancer Tags: tired work schedules fatigue Source Type: blogs

Your life online
In this digital era, we all have an online presence. And it will follow us for the rest of our lives. Once something is posted online, its hard to erase it. You can delete it but if anyone has copied it, it is completely out of your hands.When I first started blogging I was somewhat concerned with privacy and how open I would be about my personal life. Now I am also on Linked In, Facebook, and more online communities that I can remember. The concern if I ever wanted to look for a job and what if they found my blog and how (un)healthy I really am and would never hire me due to the fear that cancer cooties are contagious or ...
Source: Caroline's Breast Cancer Blog - February 14, 2013 Category: Cancer Tags: image online Source Type: blogs

Cancer awareness
I received an email the other day reminding me about getting regular cancer screenings and awareness. I don't think I need much more awareness. I am plenty aware. And I get regular cancer screenings. And more than the average bear. I don't need any more awareness. I would prefer unawareness personally.But with my  medical history, they need to be sure they haven't left a molecule unscreened for potential cancer cooties.If you need any cancer awareness I'm happy to give some away. (Source: Caroline's Breast Cancer Blog)
Source: Caroline's Breast Cancer Blog - February 13, 2013 Category: Cancer Tags: cancer screening cancer awareness Source Type: blogs

On being an inspiration
Yesterday I went to the wake for a friend, Sue, who had been diagnosed with breast cancer 21 years ago. When I met her in the breast cancer support group I used to attend probably around five years ago, she had been stage IV for a number of years - probably more than a dozen.She was quiet when she started attending the support group but then started to open up about her story. She had a cheerful smile and a twinkle in her eyes. No matter what she was going through you would always smile. Over the years, I helped convince her to go on a Casting For Recovery retreat and watched her learn to fly fish - we never caught anythin...
Source: Caroline's Breast Cancer Blog - February 12, 2013 Category: Cancer Tags: breast cancer death inspiration Source Type: blogs

Weekend recovery
Most people use the weekend to recover from their work week. Today I am recovering from my weekend. My husband only got mad at me a few times for doing too much (because he says when I overdo things I have a tendency to be cranky and he would prefer me uncranky) and today I am paying the price.Friday it snowed. A lot (in case you have been living under a rock and didn't notice). I went to the gym, my therapist, and made brownies and fish chowder. And did some work. Saturday I did a little work, peeled some wall paper, went out on my snow shoes (just on our street - I wasn't sttupid and went off in the woods or anything) an...
Source: Caroline's Breast Cancer Blog - February 11, 2013 Category: Cancer Tags: tired pictures snow pain Source Type: blogs

A cure for lymphedema
I  had heard about this a few years ago and was told that it was only in experimental stages and not yet ready for use regularly. However it seems enough time has passed so that it is now becoming a reality.This is nice progress to see that something was too far off into the future to be a reality to end up being put into use. (Source: Caroline's Breast Cancer Blog)
Source: Caroline's Breast Cancer Blog - February 10, 2013 Category: Cancer Tags: progress medical research lymphedema Source Type: blogs

Oral Parity And What Its All About
Oral parity is (in my non medical person, layman English with a touch of chemobrain and fibro fog) where an insurance company covers an intravenous medication as a hospital visit but in a pill form covers it as a pharmacy benefit and only covers a smaller portion -  $2300/month co-pay in one example.The insurance companies like it this way because its one less thing to cover. From the doctor and patient perspective its a barrier to patients receiving needed treatment. There is a big "who-haw" going on about this in the insurance world as well.I have never understood why pharmacy benefits are so different and...
Source: Caroline's Breast Cancer Blog - February 9, 2013 Category: Cancer Tags: insurance costs prescriptions medical costs Source Type: blogs

Blizzard warning
There is an itty bitty snow storm coming our way. Everyone needs to be off the road by noon. No on street parking. The subway is shutting down at 330. Its the end of the world!!!!I am moderately concerned about this. My real problem is I can't shovel so I am dependent on others to remove snow so I can leave the house. I hate being dependent on others.But I do have plans. This morning I am going to the gym and then to my therapist. at 1030 am. I should be home at 1130, after a quick stop at Trader Joe's and will stay put until sometime tomorrow.Tonight for dinner I am making oven baked fish chowder. The recipe is similar to...
Source: Caroline's Breast Cancer Blog - February 8, 2013 Category: Cancer Tags: dependency snow Source Type: blogs

From avoidance to cranky
I am in such a cranky mood. Let this be a warning to those who cross my path today. Yesterday I started in avoidance mood and ended up crabby. That when to grumpy. This morning I am cranky.So how did this happen. I was in avoidance mode because of my doctor appointment which went fine) as fine can be with an hour of unexplained wait due to rude nursing staff who preferred talking about their boy friends, cell phones, caller ID, and the weather forecast).  I ended up with blood tests in six months and blood tests, ultrasound, and follow up in one year. That's just fine.Then I had to go to a meeting which started early ...
Source: Caroline's Breast Cancer Blog - February 7, 2013 Category: Cancer Tags: tired work medical tests crabbiness crankiness Source Type: blogs

Avoidance mode
Today I am in avoidance mode. I have one of 'those' appointments today. I don't feel like talking about it, I'm a tiny bit stressed so I am going to the gym. Depending on the result, I may talk more about it later.I'm also avoiding thinking about the stupid snowstorm on Friday might ruin my social life on Saturday. Grr. (Source: Caroline's Breast Cancer Blog)
Source: Caroline's Breast Cancer Blog - February 6, 2013 Category: Cancer Tags: cancer diagnosis medical tests doctor appointments Source Type: blogs

They really don't know
A few weeks ago I blogged that its really just A Bunch of Numbers on how doctors just give us numbers and that's all they are when we hear statistics about survival, prognosis, age or whatever from our doctors. Now a doctor says the same thing in this article, A Doctor's Struggle with Numbers."Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. ...
Source: Caroline's Breast Cancer Blog - February 5, 2013 Category: Cancer Tags: oncologist honesty doctor questions communication Source Type: blogs

Keeping up with the Jones'
If all your friends jumped off a cliff, would you? The latest fashion in breast cancer treatment is to have a mastectomy, even bilateral, at the least sign of breast cancer. The celebrities are doing it, so why shouldn't everyone else?Because it doesn't necessarily mean the patient will have a better outcome. So why do patients opt for a much more drastic option when there is a significantly easier option?The answer seems to be fear of recurrence. The professional reply is that 'No doubt, oncologists could do a better job calming women’s fears and educating them on the long and painful recuperation period involved wi...
Source: Caroline's Breast Cancer Blog - February 4, 2013 Category: Cancer Tags: medical decisions surgery breast cancer treatment Source Type: blogs

Happy RA Awareness day, a day late
Yesterday was RA Awareness Day, the first one, so we went out to dinner with my parents because my mother wanted to celebrate. She has had RA for over 20 years. We didn't know if we were supposed to wear a special color or not. It was also Ground Hog Day and Punxatawney Phil did not see his shadow. This lead to some discussion. Does it mean that winter is over as we know it for the year? Or does it mean it will fade away? Or do we really care because he is not accurate anyway?RA Awareness Day did make me aware that I need to learn more about my new ailments. There is a lot I don't understand. I was attempting to reading th...
Source: Caroline's Breast Cancer Blog - February 3, 2013 Category: Cancer Tags: learning awareness rheumatoid arthritis Source Type: blogs

No need for a stiff upper lip
A recent study in the UK shows that one of the reasons that the reason for the higher cancer death rates is that people are reluctant to go to their doctor with symptoms. Their reasons are that they do not want to waste their doctor's time or they were embarrassed to tell someone about their symptoms.If you are concerned about something you need to tell your doctor and not wait. I use the two week rule myself. Most recommendations will tell you if something is not better in a week to call your doctor.I can understand sometimes its embarrassing to tell someone  about something very personal. You can always write your d...
Source: Caroline's Breast Cancer Blog - February 2, 2013 Category: Cancer Tags: coping ailments doctor appointments Source Type: blogs

Medical research can do nothing
 But marketing can make you believe it did. I am overjoyed I tell you, overjoyed to read the news: "Drugs to treat fibromyalgia just as likely to harm as help". Yes it is true. If you think Savella, Cymbalta, or Lyrica will help my, or anyone else's, fibromyalgia you are a victim of advertising and marketing. "“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”&q...
Source: Caroline's Breast Cancer Blog - February 1, 2013 Category: Cancer Tags: fibromyalgia medication medical research pain Source Type: blogs

Dealing with health problems
With a nasty medical diagnosis, such as cancer, chronic illness or pain, one is left with a few questions which a medical professional cannot answer. You get to figure them out for yourself because you have instantly received an advanced degree in being human along with your diagnosis. There are five key questions to grapple with. I did not make this up I stole borrowed from the RA Guy and from here. (I like the RA Guy, he gives lots of good advice to me.)The questions are:1. Do we talk openly about our health problems or keep them private?I think this is a personal decision. If you are Robin Roberts and can get the best m...
Source: Caroline's Breast Cancer Blog - January 31, 2013 Category: Cancer Tags: coping ailments being a patient questions Source Type: blogs

A Teen Idol
Here is my teen idol. His name is Jack. He is fifteen (15). And he invited a simple test that will detect pancreatic cancer early on. It may also be used to detect other cancers such as ovarian and lung cancers. All these cancers have one thing in common - they are hard to detect early enough to be treatable.I first read about him on Opposing Views. I thought it was too good to be true but he is the lead story on Smithsonian.com. We need more Jacks. We need more blood tests to detect more ailments. Especially ones that are 90% accurate like his test is. (Source: Caroline's Breast Cancer Blog)
Source: Caroline's Breast Cancer Blog - January 30, 2013 Category: Cancer Tags: cancer detection cancer research Source Type: blogs

Yesterday was a bad day
I did not accomplish much. I did not sleep well two nights in a row. My brain was in a fog all day. I tried to get some work done but did not feel I had enough functioning brain cells to get much done. I was also supposed to give a presentation 20 minutes away but it snowed so I cancelled.I also had a fair amount of pain so I might have been cranky. There was a contractor here for a good part of the day removing some wood where we have some rot and found an carpenter ants nest. I hate those things. We have had a chronic problem with ants since we moved in. We had a pest inspection before we moved in and they found one dead...
Source: Caroline's Breast Cancer Blog - January 29, 2013 Category: Cancer Tags: tired fatigue crankiness pain Source Type: blogs

This is a blog about cancer after all
I realize this is a blog about cancer and living with a cancer diagnosis. but sometimes I don't blog about cancer. Well, I do have lots of other ailments to blog about. And I try to ignore cancer so I'm not living in cancerland where its all cancer all the time. But it does loom in the background of my life often. Well, almost constantly. Its hard to make it go away. I am ignoring it. I have one of 'those' appointments coming up that I am really trying to ignore. Its one of the appointments where there are negotiations, watchful waiting and discussions on what to do next.I have no new cancer research to write about now. I ...
Source: Caroline's Breast Cancer Blog - January 28, 2013 Category: Cancer Tags: appointments pain cancer attitude Source Type: blogs

I am not a patient patient
at the best of times. Overnight delivery has spoiled me (and most Americans) to expect instant gratification. To quote Violet from Willy Wonka, "I want it now!"On Friday I went to see my pain doctor who is in charge of relieving me of pain, as opposed to cancer cootie detection and other specialties. The biggest news I could share with him was that my rheumatologist, to whom he referred me, is leaving the hospital to go to another one.He suggested, his usual poking, prodding and contortions (does it hurt when  you do this?), that I should increase my dose of my pain patches back up to 10 mcg/hr and then sug...
Source: Caroline's Breast Cancer Blog - January 27, 2013 Category: Cancer Tags: prescriptions pain medication costs Source Type: blogs

Its a bunch of numbers
With a cancer diagnosis you get a bunch of numbers. Prognosis, cancer markers, statistics, blood counts, and more. The numbers can tell us good things and bad things. We can read bad things into good numbers and good things into bad numbers. We can be told that we were too young to get that or too old to get this. We can let the numbers scare the crap out of us. Or we can let them just be numbers.I am not normal. I got thyroid cancer when it was very rare - approximately 10,000 cases annually. I got breast cancer when I was younger than expected. I have Rheumatoid Arthritis which was not expected - even with a family histo...
Source: Caroline's Breast Cancer Blog - January 26, 2013 Category: Cancer Tags: cancer diagnosis cancer treatment numbers prognosis Source Type: blogs

Wow another 'day'!
Another ailment means I 'get' another day! My social calendar is filling up!So what the hell am I supposed to do on these days? Am I supposed to wear a special color, make a sign, go to some event, tell everyone about my ailments?I am confused. What do these days, weeks, months mean anyway? I know they are supposed to build awareness but are they just marketing opportunities. Take Pinktober for example. We don't want that to happen to every day, week, and month of the year. There should be something more to them. (Source: Caroline's Breast Cancer Blog)
Source: Caroline's Breast Cancer Blog - January 25, 2013 Category: Cancer Tags: activism special day fibromyalgia Source Type: blogs

I 'get' another day
We all know about Pinktober for breast cancer awareness. Thyroid cancer awareness month is September. Now I 'get' another day. February 2, 2013 is the first annual (I love that term - 'first annual') Rheumatoid Arthritis Awareness Day. There are more awareness days/weeks/months that I am sure I have other days I dont know about. Here is a list of all of them so you can find out your days."Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of rec...
Source: Caroline's Breast Cancer Blog - January 24, 2013 Category: Cancer Tags: awareness rheumatoid arthritis Source Type: blogs

Driving skills
My father will probably cringe at this post, my brother will roll his eyes, and my husband will laugh. My parking skills are sub par. Really sub par. When I got my driver's license way back when, I had to parallel park - and knocked over a row of metal garbage cans but the instructor still passed me.I even drive a little car. My husband thought when we bought a little car with a tiny turning circle that I would finally be able to parallel park. Nope. Unless the space is extra large, I either skip it or take 47 back-and-forths to get somewhere within a mile of the curb. (My husband usually makes some snide comment about the...
Source: Caroline's Breast Cancer Blog - January 23, 2013 Category: Cancer Tags: driving cars Source Type: blogs

Your genes at work
We all have lots of genes and DNA and RNA and all those little bitty muons and amino acids and proteins and lots of other little bitty things that make us up. We have never learned a lot about many of them but are beginning to find out more and more.Do you remember when they said they could sequence the human genome and they said it would lead to medical breakthroughs? I think it finally is - at least to my non-medical brain. Anyway, two new advances have popped into my little realm recently.1. Fibromyalgia has been very hard to diagnose. There is no test. There is no real way to say yes or no you have it. Basically if you...
Source: Caroline's Breast Cancer Blog - January 22, 2013 Category: Cancer Tags: fibromyalgia medical research rheumatoid arthritis Source Type: blogs

Planning for my doctor appointment
Today I have to put in some deep thoughts on a plan for my doctor appointment on Friday with Dr. G the pain management specialist. After last week with Dr P, the rheumatologist who is leaving (without permission from me!), I need to get my questions ready for managing my fibro as well as the stupid back pain which causes no end of crankiness.I have goals here:Get pain under control.See #1 above.When I go to the doctor, they always ask my pain level (and if I am safe at home - which I am unless the cat tries to trip me on the stairs). I have to think what hurts, how much, and is this doctor going to care much about it. Spec...
Source: Caroline's Breast Cancer Blog - January 21, 2013 Category: Cancer Tags: doctor questions pain medication costs Source Type: blogs

---
The American Cancer Society has just published its latest statistics for 2013. I always scan through this document every year because I find it full of little cancer tidbits and factoids that are interesting from the patient point of view. You can view the document here.The best little factoid this year's statistics provide is that cancer deaths are down 20% since 1991 when they peaked. This is the result of many advances and programs:- smoking reduction since the 1960's- screenings - mammograms, colonoscopies- treatment options - radiation, chemotherapy protocols, hormonal treatments, and more. While this is good new...
Source: Caroline's Breast Cancer Blog - January 20, 2013 Category: Cancer Tags: cancer cure cancer rates Source Type: blogs

Rules for my doctors
Somewhere in the depths of my blog (if you blog for over five years I think it has depths) I have written about this before that I have rules for my doctors.Yesterday I saw my  rheumatologist, Dr. P. She was recommended to me by Dr G, my pain management doctor. It is my three month follow up (which will be the story of the rest of my life with RA) to see how treatment is progressing. I have been a bit stressed about this RA stuff and came prepared with list of questions to help me destress and further my coping with this new ailment.We discussed RA and fibromyalgia and pain management and what I need to cover with Dr ...
Source: Caroline's Breast Cancer Blog - January 19, 2013 Category: Cancer Tags: change pain rheumatoid arthritis doctor appointments Source Type: blogs

The medical roller coaster is not just about cancer
I admit I have been struggling in some ways for the past few months in terms of that lovely medical roller coaster. So often I think of the medical roller coaster as being focused on cancer - because cancer has such a 'fatal' 'terminal' 'deadly' 'life changing' connotation. I think 'life changing' is the best term here. A cancer diagnosis is life changing.But also other diagnoses are also life changing. Like rheumatoid arthritis and fibromyalgia. When you are diagnosed with cancer, you usually look the same on the outside unless in active treatment. You do your thing - work, exercise, socialize - and have a life.But with r...
Source: Caroline's Breast Cancer Blog - January 18, 2013 Category: Cancer Tags: education ailments medical roller coaster stress Source Type: blogs

Crankiness abounds, redux
Am I cranky or am I cranky. I had an entire blog post written about why I am cranky these days and posted it. I went back in to edit it, and DELETED THE ENTIRE THING without any help from the cat. I did this all by myself.I am cranky. Here are the reasons that I can remember that I wrote for being cranky:Not enough sleep. I get a lot of sleep but then alarm clocks, pets, and other annoyances wake me up.I get tired very easily and have had to limit my schedule and some people really annoy me in that they do not understand why I am not jumping up and down to go out and be social and to work on weekends like I used to be able...
Source: Caroline's Breast Cancer Blog - January 17, 2013 Category: Cancer Tags: crabbiness crankiness Source Type: blogs

Copying Lance
Since Lance can do it, I can too. I will make my full confession.I take drugs. Yes I do. I take them on a daily basis. I have a large collection of prescription bottles obtained from a variety of sources. I succumb to peer pressure and take them regularly. I have been doing this for years.They might even be consider performance enhancing medications.There I feel better having confessed.Now allow me to explain.I take drugs regularly. I take them on a strict schedule of before breakfast, after breakfast, dinner, time, and as needed for pain and crankiness.I take drugs that come from several sources - who are all linked by co...
Source: Caroline's Breast Cancer Blog - January 16, 2013 Category: Cancer Tags: honesty pills medication confession Source Type: blogs

Self Education
My week ends with a trip to my rheumatologist to discuss progress or lack of progress in treating my rheumatoid and getting it under control. I have had two other appointments with her. The first one was 'we really do not think you have RA but will figure it out and get it under control.' The second visit was 'even though I didn't think so, you do have RA and fibromyalgia so let's start treating it'.Now it is time for the progress update and we can talk about medication allergies, disease progression, treatment lack of progress, fear of needles, pain levels, physical limitations, and all sorts of fun things that I am not s...
Source: Caroline's Breast Cancer Blog - January 15, 2013 Category: Cancer Tags: disease fibromyalgia doctor questions rheumatoid arthritis doctor appointments Source Type: blogs

Time to take a break from Dr. Google
Dr. Google can kill us all off in our heads in a matter of seconds or minutes (depending on the speed of your internet provider). I have new ailments that I have been asking Dr. Google about. I also have continued to ask Dr Google about my other ailments. I have totally grossed out myself and made myself decide I will end up in chronic pain in a wheelchair in a matter of weeks.I am not showing your actual links because that would mean finding the disgusting things again and going through it all so you will have to suffer with my descriptions.I found a picture of a woman with uncontrolled lymphedema in her arm. On one side ...
Source: Caroline's Breast Cancer Blog - January 14, 2013 Category: Cancer Tags: complications stress internet Source Type: blogs

Sleep
"Never underestimate the power of a good night's sleep."I don't know who said that but it is true. Maybe its just a mattress commercial but I still like it.I have never been the late night partier (well except college but who wasn't then and maybe a few other times but the statute of limitations is now well past on all my 20 something activities).I believe, and have for decades, that 9 pm is a good time to go to bed for adults. A friend once accused me of living like a little kid by going to bed so early. My husband believes the same thing - I think mostly due to his military years and maybe because 21:00 looks m...
Source: Caroline's Breast Cancer Blog - January 13, 2013 Category: Cancer Tags: nap sleep fibromyalgia side effects rheumatoid arthritis Source Type: blogs

More cliff news
Finally I caught up with my oncologist yesterday. She could still barely talk after being out with the flu but I had called after I waited nearly a week. I saw her nurse practitioner on Monday and called after lunch on Friday. I thought that was long enough to leave me dangling on the Femara cliff.Last August when I saw her, she was all set to take me off Femara at this visit. We talked about it so I could emotionally prepare for the cliff of the end of breast cancer treatment. I did stress over it, think about it, whine about it, and otherwise cope maturely.When I went to my appointment on Monday she was out with the stom...
Source: Caroline's Breast Cancer Blog - January 12, 2013 Category: Cancer Tags: test results osteoporosis frustration breast cancer treatment Source Type: blogs