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 medical care and organize a million supportive fans in no time, maybe talking publicly will work. It also means opening yourself up to a million questions and stupid requests. "Is that your hair or a wig?" "I'm sure if you take a nap you can come to my party and stay until midnight."

There is a middle of the road answer you can do what I do. Write a blog and send everyone who asks questions to read your blog. That way you can also control the flow of information. Whatever works for you. I do not recommend keeping quiet because talking about it may help with stress.

However I would be cautious in talking about your health in the work place. It is no business what your health ailments. You can just say you have health issues and need to alter your schedule to go to doctor appointments.

2. Do we ignore a new symptom or do we call our doctor?

That fine line between hypochondria and ignorant bliss. I have adopted the two week rule for myself. If it still is a problem for two weeks I start taking notes, consider the severity and then debate the doctor call. Sometimes I do a little research and find out my new symptom is part of my new diagnosis. I did not know people with fibro get headaches. All of a sudden I have been getting headaches, I now write them off to fibro and ignore them. Unless they make me cranky.

3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?

Hmmm... common sense tells me to do whatever seems will help within any limits my doctors have given me. I am not about to try yoga, no matter what people tell me, because my doctor has expressly forbidden anything that involves twisting my back and holding poses. I did acupuncture without any other consent. I just had to get over the icky needle thing first. I am very hesitant to take any herbals because of the number of medications I am on and how many problems I have had with interactions.

4. Do we push our bodies to the limit or do we play it safe?

That's an easy one for me. If I do too much I spend a day in bed. I have a new exercise plan that I can get through my entire workout and still function as a normal human being with is my goal these days. My life is carefully scheduled to allow or down time.

5. Should we fight aggressively to retain our health or should we accept our fate?

There is always hope. Never give up! I can't say anything else on this.

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.

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 ant and signs of mice.  We have a mouse terminator (a/k/a a cat) and thought we were fine. Then the ants started to show up. We could never find the source so we think we just did. The exterminator is due here in half an hour. Then the contractor will return as will the banging noises of construction. The cat and I will hide upstairs.

Last night I did get some sleep. While I don't feel 100% I do feel human for the most part - there might be some cranky pain filled b*tch buried inside. But I will accomplish work today and I will even get my lazy butt to the gym this afternoon. And maybe even cook dinner. Last night we had someone bring us pizza (in a snowstorm which is mean we know, but we did give him a good tip). I have slice mushrooms, chicken, and some brown rice so I will compile something.

Yesterday was such a bad day, when I called into work to say that I was planning on staying home today, they told me at work I sounded like crap. My husband made fun of the way I talked. Today can only be better.

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 can poke around and find some - maybe later this week. I have no pinkification to whine about except this is the time of year for recruiting for all the pink walks. I skip all those commercials. 'I can walk sixty miles for someone who has cancer' and all that cutesy crap. You won't ever catch me in one of those walks. More power to anyone who chooses to do them.

One extra benefit aggravation of developing ailments which cause pains around your body is you can take your mind down that evil road to cancer hell very easily. With cancer, you need to be aware of your body and look out for aches and pains that don't go away and linger. Well with my new ailments, RA and fibro, you have ailments which cause aches and pains that don't go away and linger. I tell myself they can't be cancer because I can blame them  on RA and fibro.

I try to ignore them and live my life on the edge of cancerland as much as possible.

I am not a patient patient

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 suggested I see him again in six months. I made a face and he changed it to four months. (Who says you can't make faces at  your doctor or that I might be too old for it?)

There are issues with increasing my pain patches back up to 10 from 5. The upside is less pain. The downside is: the price. Can you say $95 for a four week dose? Ouch.

I was getting the patches through mail order because I used to be able to save money and pay $95 for three months. But the law has changed here and they in the evil addictive/street value class and I can only get one month's worth at a time. I understand the principle behind it that people can be addicted, blah, blah, blah. But it hurts my wallet with the copay. I have a friend who gets the 20 dose and she pays around $20/month.

I do have very good health insurance but every so often I get dinged by something like this. For instance my insurance did not cover a chemotherapy wig. But I have a $5000/year out of pocket maximum which does not include pharmacy expenses.  But it means I will not go bankrupt paying medical bills. In the end, I will be paying over $1000 to be relatively pain free each year. But I think its worth it.

There is another downside to these pain patches. I have a reaction to the adhesive. Of course I do. I don't know if its an allergy or what. I have to put on cortisone anti itch stuff on my skin before I can put on a patch which means waiting an hour.

I have gotten completely off track of my being a patient patient so allow me to haul my train of thought back. When the doctor asked which pharmacy I wanted my new prescription to go to, I said the local pharmacy so I could go fill it that day. BUT IT WAS OUT OF STOCK. Being a weekend it won't be there until after 2PM on Monday. I want it NOW! I'll just suck it up and live on Tramadol until then.

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 history of it. According to the numbers I should be more likely to get a different autoimmune ailment.

I have friends who got early stage cancer diagnoses with relatively rosy prognoses who are no longer with us. I have a friend with an ovarian cancer stage IV diagnosis who is still with us and doing well more than three decades later. I have friends who are still here after stage IV diagnosis who go to treatment, get periodic CT and PET scans and are doing well. I have other stage IV friends who are doing just fine and are not in treatment. I have many friends years and decades after a cancer diagnosis who are still doing fine.

I met another woman online this morning when I read her story about how she shouldn't be here either if she listened to the numbers. Our doctors can only tell us the numbers, but they can't tell us our lives.

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.

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 recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding."

Rheumatoid Awareness day has competition as it is also Groundhog Day. Maybe all of the RA people can crawl over to visit Punxatawney Phil.

"February 2 already boasts the observance of Groundhog Day, from which several analogies can be drawn to rheumatoid disease. "Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow," says Kelly Young , founder of the RPF. "It's impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.""

Well I will put a note on my calendar and remember to wear a special outfit that day. Its a Saturday, maybe we will go out to dinner. Heck, maybe we could have a party.

Citation: Disabled World News (2013-01-23) - Establishment of Rheumatoid Awareness day of recognition to be held each year on February 2: http://www.disabled-world.com/disability/awareness/ra-day.php#ixzz2ItF25Q00

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 distance to the curb.) Sometime when I find the parking place difficult, I allow my husband to park the car for me.

I have somewhat wanted a VW Beetle because it comes with a flower vase. I am a girl. I admit. Maybe when we are next car shopping, I should get one of the car's Ellen makes fun of here.



When I go to the gym, I use pink 1lb. weights. No one else ever uses the pink weights. My only problem is I would like a set of pink 1 lb. weights for home and can't find them anywhere.

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 have pain at enough of certain pressure points combined with other symptoms, they say 'you have fibro'. Not a very technical way to do things.

There are little thingies in us called 'cytokines' (not that I really know what they do) but apparently it now seems they have seen that people with fibro have a significantly lower level of this cytokine. Hence they may be able to develop a test. This would be nice to have something definable. As long as it works. I mean there are tests for RA but 25% of patients with RA test negative on them.

They are also leaning towards saying that fibro is not a rheumatological illness but a neuro-immune ailment, different than RA.

2. There is a genetic element to rheumatoid arthritis as well. Where they are finding little regulatory tags in the white blood cells of patients with RA. Basically this means they are finding a switch that makes good cells go bad and let you get RA. And they don't even need to be near by they can be far away in your body, caused to switch by a medication or illness.

So this means they will be able to tell ahead who might be more likely to get RA and take preventative steps and increased monitoring.

I know this is all very technical and you can read the articles I have linked to for lots more science but we can call it progress I think.

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:

1. Get pain under control.
2. 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. Specialists only care about the body part that they treat if it is giving you pain. Well I think they do but if I go to the orthopedist who treated my tennis elbow and tell him my back is a 6, he really wants to know that my elbow is a 5. 

The problem is Dr G doesn't want to change my pain meds around much these days  because we are trying to get the RA under control. Dr P just increased my methotrexate (which I really need to learn to spell for I am in violation of my rule that you cannot have an ailment or a treatment you cannot spell and pronounce.) If two sets of meds get changed around, then you never really know what is working and what isn't (or which is causing which nasty side effect).

I was on Butrans 5mcg/hr pain patches but they weren't enough so Dr G increased my dosage to 10mcg/hr and then I had to go through pharmacy hell to find out my co-pay for those is $95/4 weeks which I am not sure I can afford. I am back on 5mcg/hr because I ran out of the 10s and those are a paltry $65/4 weeks. I hope there is something else which will cost less but not require needles and will relieve pain.

So that is  one question. Then we can talk about fibro and back pain and neuropathy and all sorts of fun things. I have to write this all down so my chemo brain isn't required to remember anything important.

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 news, we still have a long way to go in treatment, prevention, and cure.

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 G next week. She was concerned about my fatigue levels and wanted to run some more blood tests. I was surprised to find out which pains are not RA and which are probably fibro - tips of fingers are fibro not RA. Foot pain is probably fibro. Hip pain on the outer hip is probably fibro. I have lots of notes to talk to Dr G about.

Dr P answered all my questions. She is happy with the progress of treatment but says its still active so we need to up my dose of methatrexate to get it under control.

She asked me my opinion of self injection. I said my husband (the saint) had agreed to give me my injections if we get to that. I was very pleased to hear there are non injection forms of medications available. And she said she would make a note in my file about me and needles.

We did discuss long term prognosis and she assured me that with new treatments the goal is to get the disease into remission so that I can live pain free for life and not end up with crippling disfigurement. This is the current treatment expectation. This made me MUCH happier.

I was beginning to think that this could be manageable and I could see working with her in the long term. I was feeling more relaxed about this whole thing. She dropped her bombshell. She is leaving the hospital at the end of March. WHAT!!!!!!!!!!!!!

That is not allowed in the rules for my doctors. Doctors that I like I never allowed to leave or retire. One of the reasons I liked her so much is she is  younger than me so chances were that she would be with me for decades. Dr G is much older and I hope he will never retire.

Its completely understandable as she has two small children and traffic in the evenings can make her homeward commute to take 90 minutes.

The hospital expects to hire someone in the spring. Normally I would alternate a visit with nurse practitioners with the doctor every three months. The plan is I will see her nurse practitioner in three months. Then three months after that I will see the new doctor.

But I have a plan. When I see Dr G, who sent me to Dr P in the first place, I will ask him his opinion of who to see in rheumatology or if I should wait to see who the new hire is. I can be sneaky when my health is on the line - especially when my doctor breaks the rules.

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 rheumatoid and fibromyalgia, you look mostly the same, might be moving a lot slower and hobbling around. But you are on the same damn medical roller coaster for a life long adventure.

The ways to calm down the medical roller coaster include knowledge, self education, exercise, and maybe even blogging.

I am coping with the medical roller coaster and I think I have been handling it worse than usual these days. I need to get my ailments under control both physically and mentally. I'm a work in progress here.

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. 
• I have an appointment with my rheumatologist to discuss progress/prognosis/treatment options etc. Maybe stressful
• I may be a little over scheduled but not as bad as previously.
• I have an upcoming ultrasound that will not be discussed until I am damn well ready to - so don't even think of asking me about it. It could be stressful.
• It is freezing cold out and I need to go to work asap - but am rewriting my blog in a less than witty fashion because of my severe lack of computer skills.
• And I am really annoyed at all the liars out there these days - Lance Armstrong, the foot ball player with the 'dying' girl friend who never existed, politicians, and other fools.

I should just stay in bed and hide from the world but will head out and share my crankiness with the world.

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 computers and know what I take from each of them.

They also come from several pharmacies who aren't linked but who are all paid by the same evil insurance company which oversees their repayment.

I consider them to be performance enhancing because without them, I would not be able to move around at all, would be in constant pain, and would have no metabolism. With them I am moving faster than if I could without them.

I succumb to peer pressure from doctors, nurses, friends, family members (who are concerned about crankiness) to take my pills regularly.

But there is a difference between Lance and I - mine are all legal and have not been banned through anti doping agencies.

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 sure I know that much about.

I do know some about fibromyalgia and some about RA. I do not expect to have to be able to distinguish between which pain is which - some of it is obvious, some not. But I do need to be able to understand what is disease progress and what is treatment progress. I need some education.

I used to always be good about studying ahead but now I will start cramming. Good thing there is a convenient snow storm which should keep me home tomorrow and give me the time to learn something.

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 she looked light a normal slight build, slender woman. On the other, her arm looked like it belonged to someone weighing about 400 lbs. 
• Then I found some pictures of what rheumatoid can do to one's feet since my feet really hurt recently. They showed all these x-rays of feet wit plates in them, turned up toes, collapsed arches, etc. 
• Then I found pictures of flesh eaten through to bone by rheumatoid.
• Then I found articles on the latest conflicting research on breast cancer screening and its value for older women.
• Then I found a comment page on people coping with fibromyalgia
• Then I found a list of sayings by people on 'you know when you have rheumatoid...' and realized I could agree with all of them.
• And more.

The more ailments you have the faster and easier you can kill yourself off.I need to step away from Dr. Google (and I need a trip to a Caribbean beach). But getting away from Dr. Google is easier and cheaper.

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 much later than 9pm.

I have always been an early morning person. Even as a teenager I never slept until noon. Sleeping late would mean getting up at 8. The cat loves this because he likes a 5am breakfast. During the week we have an alarm clock with a back up cat alarm. Sleeping late and getting to work late was never a problem.

Usually I have slept pretty well with growing problems of insomnia over the years. Chemo treatment and stress are definitely insomnia problems. Back pain can make it had to get comfortable and sleep.

But now I no longer have any sleep problem - other than not getting enough. Both rheumatoid and fibromyalgia cause fatigue. In the past few months I have been able to take naps daily if I want, sleep ten hours a night. In the past few weeks I need both hands to count the number of times I have slept in past 8 am. I have also gotten more than 10 hours of sleep on many nights. Yesterday I woke up at 930 am.

Each week I find that by Friday I am exhausted from getting up to go to work three mornings. I can't get enough sleep during the week. By Friday night I need at least 12 hours.

I don't have enough time in my life to sleep so much. I'll have to give something up - like going to doctor appointments. That would give me more time for sleep. Ha. As if.

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 stomach flu so I saw one of her nurse practitioners who indicated there is new research so maybe I wouldn't be going off Femara right away (despite my stress, whining, and thinking). And that is the case.

There is new research in the past month or two that says that more might be better in terms of breast cancer treatment. It has been thought that ten  years of Tamoxifen might be better than five for premenopausal women. Now it is thought that up to ten years of Femara might be better for postmenopausal women. And for people like me who had over two years of Tamoxifen and switched, originally aiming for a total of five years of hormonal treatment, it is thought that five years of Femara plus the two plus years of Tamoxifen is better.

So now here is the new plan. I will continue on Femara for up to two and one-half more years based on how my bones/osteoporosis are doing for a total of five years on it if possible. We will assess after each annual bone density test in May. I can also be treated for osteoporosis while on Femara so that is an option as well.

I am a high risk for osteoporosis due to a strong family history, synthetic thyroid hormone is also hard on your bones, and Femara is really hard on your bones. Combined with all that, I had osteopenia (precursor to osteoporosis) before I started all this breast cancer crap (and crap it is).

This has been the story of my cancer treatment - I am always the 'different' case - because of your medical history we need to be sure. Triple grr.

Damn the new research and the stupid moving cliff.

Here's a surprise!

Researchers lie exaggerate benefits and play down side effects in describing their results. I am SHOCKED I tell you, shocked! And I'm sure its not just for breast cancer drugs.

A recent study in the Annals of Oncology (which you can't read online unless you pay big bucks) found this. I found this describing it:


"Reports on Breast-Cancer Drugs Are Often Biased, Research Finds

Researchers often exaggerate the benefits and play down the potentially toxic side-effects of breast-cancer drugs in clinical trials, according to a new study published in the Annals of Oncology. One way they do this is by emphasizing some secondary benefit of the drug, even if it failed to achieve the primary objective (such as, say, lengthening the life of the patient). High toxicity findings frequently go unmentioned in abstracts and conclusions—perhaps, the authors suggest, “to make the results more attractive.”

The researchers looked at 164 randomized clinical trials from 1995 to 2011 and found evidence of bias in reporting toxicity in 67 percent of those trials. While they note that the pharmaceutical industry is “increasingly influential” in the sponsorship of such trials, they didn’t find any association between industry involvement and bias.

So what do the authors propose be done? Journal editors, regulators, and reviewers should apply “a critical eye to trial reports” to ferret out instances of bias, they say—implying that they have been failing in that responsibility up to now."

Well is anyone else shocked here? First we must insist researchers take lie detector tests. Next markers are not allowed to put their spin on any results. Finally, editors, regulators and reviewers should smarten up.

Doh! Really. This does not surprise me at all. I don't put blame on editors, regulators and reviewers. I am sure they are working with what is presented to them. Is it their job to decipher research? Unless they are scientists I am not sure they are qualified. No the onus goes back to the researchers who run the studies to make sure the data is presented correctly.

A momentus event

I have no idea how this happened. It was not planned. Its significant (but not the cure for cancer we all want).

This my blog's 2000th (two-thousandth) published post. Back on Saturday, June 2, 2007, I had no idea my blog would be around this long.

I planned a little blog about my breast cancer adventures. It sort of developed into a life of its own. I had to blog every day. And I did. I very rarely skip days - usually this only happens when I am out of internet range.

Even if I hadn't developed new ailments would I have kept blogging? Probably. Its an addiction. It would probably be more a blog about my cat/husband/garden/adventures, than just health. Wouldn't it be nice if I didn't have so much 'health' to write about.

Blogging has been a great outlet to me. It has helped me through the cancer roller coaster, it allowed me to meet wonderful people both on and off line. It has opened a whole new world in term of how to be a patient in the 21st century. And its a lot of fun.

I guess I'll keep going. I have a few more blog posts lurking in my brain and a bunch of new ailments to get under control. Do I have 2000 more in me? Who knows. Only time will tell.

Dash - blah, blah, blah

Blah, blah, blah. Dash. Again. do you know what Dash is? Its that boring diet that won again as the best overall diet. Its called Dash or - Dietary Approach to Stop Hypertension. It was developed by the NIH. It also helps reduce cholesterol and the risk of heart disease, diabetes, and kidney stones. Blah, blah, blah.

It focuses on limiting your sodium intake as well as the usual balanced plate of grains and fruit and vegetables. So hide the salt shaker and you will do fine. (I like the picture on CNN.com which shows a salad full of olives.)

The thought of it makes my skin crawl. It was introduced to me by a doctor who told me the high blood pressure issues I was experiencing a couple of years ago was completely my fault due to poor eating habits and didn't listen to me at all. I will probably never go on the Dash diet but I don't really use a lot of salt in my food and I eat lots of fruits, vegetables, and grains.

See what a poor bedside manner can do to a patient?

And the best commercial, easiest to follow and all that diet is Weight Watchers, which I sort of live by anyway. You can see more at US News & World Report.

Diet, schmiet. I'm trying. The scale is slowly going in the right direction which is a good thing. We finally are almost rid of all the junk food/candy which accumulated since Halloween - a continuous influx of junk. Now we can go back to eating healthy. And I'll skip the Dash.

The cliff moved

Yesterday I had an appointment with my medical oncologist to finalize me going off Femara (after 5 1/2 years of hot flashes - jealous?). I have been debating/stressing/agonizing over this for a few weeks or months. I expected to have the big conversation yesterday.
I was wrong.

My oncologist's two children shared their stomach flu with their mother. Apparently she started vomiting as she drove to the hospital. I saw one of her nurse practitioners who I had never seen before instead.

She was very nice and remarked about my lengthy medical background (it is now at a level where doctors and other medical personnel comment on it) but we had never met before. She said according to the oncologist's notes when I saw her in August she was going to take me off Femara now, in January.

However, there has been new research suggesting longer on Femara might be better except in cases where the side effects are becoming an issue. Like me - my bones are turning into to Swiss cheese due to osteoporosis. But there still  might be benefit to staying on Femara for a while.

So we ended the appointment with:

She was going to email the oncologist with a list of questions on whether I should or should not go off Femara, when I should have another bone density scan, and when she wants to follow up with me next. I should hear back by the end of the week.

In the meantime, i is my decision on what to do. I can stay on Femara, stop Femara for good, or stop Femara and then go back on it if she wants me to.

The cliff moved. Damn. I feel like a politician.

No pain, no gain.

I end up in pain all the time these days whether I do anything or just sit around. My theory on this is if I am going to end up in pain, I might as well have fun doing so. It is January. It is Boston. It is winter. So yesterday we went to the beach.

Why not?

It was low tide.

 It was a beautiful day. The sun was shining once it stopped snowing.

This might even be part of a ship wreck from the early 1900's.

 

There was snow on the beach and some ice.

And I made a snow angel.

 

Then we went out for (very healthy) fried clams while my next Tramadol kicked in to relieve the pain. I had fun while I was in pain.

Its a whole new world out there

So you get an ailment and, in the very 21st century way of doing things, you start a blog. You meet all kinds of people (in person and virtually), get and give support, and learn a lot about your ailment and resources available for you. You start following other blogs, sign up for communities and listservs, you get people to communicate with world wide.

Its amazing how much information and support is out there - its truly a wonderful thing. It can be a full time job to keep up on a single ailment.

But I started behind the curve as I had two ailments - two cancers - thyroid and breast to blog about. I have mostly focused on breast cancer but I have let the thyroid cancer come into play as well.

But now I have more ailments - fibromyalgia and rheumatoid - to cope with and blog about. I have followed more blogs, joined more online communities and listservs, my inbox has its own little folders to help manage the vast quantity of emails I receive - the most popular folders being 'Cancer' and 'Health'. I have a lot more to learn.

I never realized how insulated in the cancer world I was until I read the Rheumatoid Arthritis Guy's blog this morning about more of the best inflammatory arthritis blogs. I like the RA guy - he is a self described superhero blogging his way through chronic pain and debilitating inflammation. I will probably even join the monthly pain support group help locally as I learn more about my new issues.

I digress. Now I have a whole new world to learn about out there - find support, learn about my new ailments, and keep on blogging.

I am making this a positive thing

Although I wont take my last Femara tablet until I see my oncologist on Monday, just to be sure there are not any last minute positive studies that will show Femara forever will prevent any future return of cancer cooties, I am making this a positive thing - as much as I can.

Breast cancer treatment puts you into menopause. My breast cancer treatment started on August 1, 2007 and my hot flashes began shortly there after. Tamoxifen continued them. Femara continued them. I am not sure I remember life without hot.flashes. This is now January 5, 2013 which means its been 5 years and 5 months of hot flashes. They can be convenient on a cold winter day but not really. No never really. Hot flashes suck.

So now this cancer treatment cliff has a positive spin - no more hot flashes.

There are other side effects from Femara:

• dizziness, drowsiness, weakness, tired feeling;
  
• hot flashes, warmth in your face or chest;
  
• flushing (warmth, redness, or tingly feeling);
  
• headache;
  
• nausea, constipation;
  
• bone pain, muscle or joint pain;
  
• numbness, tingling, weakness, or stiffness in your hand or fingers;
  
• pain in your hand that spreads to your arm, wrist, forearm, or shoulder;
  
• night sweats; or
  
• weight gain.

I don't think I would miss any of them, come to think of it.

I can't say that I have had all of these but I really wouldn't miss them. I will confer with my oncologist and see how much better I might feel physically without Femara. Its the mental thing that is still getting to me.

Approaching the cliff

I have my own personal cliff that I am facing. And it has nothing to do with finances. Money isn't everything as the old saw might say. My cliff involves my health, as always. I don't think of my health as a series of cliffs in anyway. It is a series of disasters, appointments, and procedures, where I might feel a pinch.

But on Monday I face the breast cancer treatment cliff. I will stop taking Femara. That means my breast cancer treatment will end and I will go on my merry little way.... WAIT, BACK UP.... Cancer treatment can't end. I need to have my hand held for the rest of my life with this cancer shit.

Deep breath. Well if I am not in treatment any more they can still hold my hand. Can't they? I have been in cancer treatment continuously since May 2007. I have had surgery, chemotherapy, radiation, Tamoxifen, and then Femara. Through this whole process there has always been another step to look forward to. But not any more. I'm done! Yippee, oh shit.

On Monday my oncologist and I will discuss this again. She already brought it up when I saw her last fall. I thought I would be ready, I enjoyed the advance notice. I thought I was running out of pills a few weeks ago and even got a refill of Femara so I had enough to get me to my next appointment. I haven't even opened that bottle yet.

I know we will talk about how Femara has done a number on my bones and I may need some additional treatment to get my bone density back up to where it is supposed to be.

I know I will also continue to meet with the surgeon annually for follow up mamograms, the radiation oncologist for annual follow ups, and my primary care. And my pain doctor, rheumatologist, and all those other doctors so I guess I will get some care that will include some hand holding I hope.

But now I am facing the Emerald City at the end of the Yellow Brick Road through Cancerland. (Can you tell we wanted The Wizard of Oz recently? So what's in the Emerald city - healthy bones, healthy me, etc? Or is there just a little man behind the curtain running the world in front of the cliff?

On Being Happy

We should all try to be happy and enjoy life. Who wants to hang out with a bunch of curmudgeons anyway? We do not even need the internet to tell us when life gives us lemons we should make lemonade (and add vodka as needed). But I do think we should forget about things like the doomsday clock, cliffs, death, and cancer among other things.

So I looked on the internet for sources of information on this (because everything on the internet is true) and found that there are 15 things to give up in order to be happy:

1. Give up your need to be always right.
2. Give up your need to be in control.
3. Give up on blame
4. Give up on self-defeating self-talk.
5. Give up your limiting beliefs
6. Give up complaining
7. Give up the luxury of criticism
8. Give up your need to impress others
9. Give up your resistance to change
10. Give up on labels
11. Give up on your fears
12. Give up your excuses
13. Give up the past
14. Give up attachment
15. Give up living your life to other people's expectations.

I could write an essay on each of these. You can read more on these here but I think it comes down to defining yourself, being yourself, put your self as number one, don't worry about what others are doing or might think, and relax and be happy.

Life throws us curve balls and if we can be happy before a curve ball nits, we can cope with it better if we are happy than if we aren't when it hits. We need to focus on what makes us happy as well.

Happiness is underrated. And incredibly important.

Get out of my way

As part of my routine, I am going to the gym after work today. I go three days a week regularly and I am serious about my workout. I bring my nook or a book so I don't have to talk to poeple I don't want to on the cardio machines. I have a routine, 45-50 cardio, four machines, and the rest in the mat room. I have a schedule to meet - I need to get through my routine and go home before I collapse in exhaustion after a long day at work.

I know the gym will be annoyingly crowded by all these resolution types. I hate the gym for the first three weeks of January - that is how long the average New Year's Resolution lasts. Then they give up and don't come back to the gym until January of next year.

But for the next three weeks, all you resolution people need to keep out of the way of the regulars.

• You look at the machines and cant figure out how they work because it has been so long since you were there. So you fiddle, and hopefully will not hurt yourself, and take a long time to sit there between sets because you probably put too many pounds on the machine.
• Yes a stationary bicycle is slightly different than one you ride down the street. No kick stand to start with.
• You probably walk slower than you think on the treadmill. Start slowly and build up. Don't jump on at 5 mph or you will probably land on your butt.

How do I know these factoids?  At one point I was a gym newbie and knew nothing on how to use a treadmill either - I know its only walking but its a little more complicated indoors. I took the time to learn with trainers on how to work the machines and asked questions when I didn't know.

But in my cynical 'New Me' way, I am more likely to say 'get out of my way' and stop hogging the machines.

Does one out of four count?

I'm slightly better than others because the data says 80% of New Year's resolutions fail. I made four resolutions at the beginning of 2012, and only achieved one. My resolutions were:

1. Not to get cancer again in 2012. I didn't. I mean there are things that are under supervision but no new diagnoses.
2. Not to develop any new medical ailments in 2012. FAIL. I now have fibromyalagia and rheumatoid arthritis so I have all sorts of new stuff to learn about.
3. To lose weight. FAIL. I upped my personal deflabbification project and I didn't lose weight. Well I did and it came back - see #2 above which made it harder to exercise. I think I weigh exactly the same as I did a year ago but I am still motivated.
4. To be a perky cheerful person all the time. FAIL. Again see #2 above which makes it difficult to be perky and cheerful all the time when one is in pain, tired, and cranky. But I still manage to be perky occasionally which really annoys my husband so that is just a bonus.

Well now I have time to come up with new resolutions for 2013. I'll think about it and get back to you in a few days.

In the meantime, Happy 2013.