Tuesday, July 31, 2012

My Olympics

In the midst of the 2012 London Olympics here is my version. The opening ceremony was on too late at night. I did not want to spend 5 hours in front of the television watching it until midnight. It would also interfere with my regular TV viewing. So I took the easy way out and DVR'd the opening ceremonies that were aired about 2 am.

Saturday morning we went to watch the history-of-England-set-in-Bag-End-with-deatheaters-highlighted-by-Mr-Bean-and-Paul-McCartney misery. I was really looking forward to the parade of teams coming into the stadium but it was trimmed from Bosnia to Uruguay or so with all the other countries cut out. Wah! I could have skipped the Harry Potter visits Bilbo Baggins and watched the other countries. I should have recorded the other version.

Then began the men's swimming and water polo where very fit healthy people accomplish feats that I couldn't do when I was healthy in Speedos. I convinced my husband to watch the Olympics when the women's beach volley ball came on proving his California background by commentating for me. Yesterday I skipped most of it (so I could go to the beach) and caught up with the morning news. I will watch tonight to get the women's gymnastics teams. Don't laugh but I wouldn't mind seeing the synchronized swimming and rhythmic gymnastics at some point.You never see them anywhere else.

I admit I am looking forward to the end of the Olympics all ready. I wouldn't mind seeing some more but they go on for more than two weeks. I just admire the athleticism on all their part.

Monday, July 30, 2012

The 'poor me' attitude

With all my ailments (but I really am a healthy person) sometimes its hard to avoid the 'poor me' attitude. I hate using all those words like surviving, battling, fighting, blah, blah, blah. But some days nothing goes right. There can be one of those fun medical adventures with the wrong results or something new decides to crop up or return or I simply get up on the wrong side of the bed so to speak. (Which one is the right side and which is the wrong side - I have never really understood that one).

Anyway some days its hard not to get dragged down into the 'poor me' crap. I do not use the oh-so-insensitive terms of survivor or warrior or whatever. I am a person living with cancer and a bunch of other medical ailments.

This poor me business can also be helped along by the 'well intention but clueless' who ask things like 'and how are you feeling today?' or 'what does your doctor say now - are there any new treatments?' or 'I would have thought they would have cleared that up by now' or 'will that never resolve on its own?' I try to avoid those people.

I know people mean well but sometimes they really do not understand at all. I have many things which cannot be fixed - lymphedema, back pain, bursitis, two cancer diagnoses - that I am stuck with so you don't need to remind me thank you. Your poor attitude is infringing on my life. May be its 'poor you' instead.

Sunday, July 29, 2012

Better late than never

Last winter I was approached by Tory Zellick, the author of "The Medical Day Planner" asking me to review it and then make it available to people at the Center where I work. I said I would because I had plenty of time. The book didn't show up when promised and my life got VERY busy for several months. In the midst of all that the book showed up and as I was busy I put it aside - like every non essential thing in my life. It got lost in a pile of books to deal with.

Finally I rediscovered it and said to myself "oh crap I did say I would review it didn't I?" Then yesterday Ann, over at But Doctor I Hate Pink reviewed it and started a contest for a copy of it. I started to feel like a slacker and the guilt piled on. So here is my review:

One word: wonderful. One request: everyone should be issued one of these at birth.

Seriously. I looked at it and said why don't I have these records of my entire life? I have chemo brain and have no idea. But if I had had this book issued at birth and kept it up to date I would have known.
It makes me want to go back and put in all the information I have on my medical adventures - but I think I might need a second or third copy before running out of space.

My mother used to keep a file on each of us children full of useful things like birth certificates, doctor notes, immunization records, and report cards. I have no idea where my folder is now. I may have it or she may still. I have kept diligent records over the last five years of every medical expense (for tax purposes), appointments, and medications. I have a folder which is labeled "Current Medical" that has my recent test results. I know who all my doctors are and how to reach them - most of them conveniently are at the same hospital where my patient number will unlock the piles of information on me.

I could have used one for my husband as well. He doesn't remember his medical ailments and what he has done either. He did have some medical adventures a few years ago that could have been very nasty but ended up with good results. I wish we had written all that down then as well. Actually he doesn't know it but he has a little section in each of my medical appointment and expenses list so I can track that part of his as well.

But back to the book, unless you are perfectly healthy go buy a copy. If you have never had any ailment - even the common cold - you don't need it. But since we all have had the common cold we all need it. Get a copy for your spouse and each child as well.

It is conveniently broken out into useful sections - patient information, phone book, medication appointments, treatment, procedure history, test and scan history, hospitalizations, notes, and day planner. I'm not sure if a one year day planner will be helpful to me but all the other sections are incredibly logical and useful. Some things would be written in pencil to be erased and updated but others could be indelibly etched in ink.

So what are you waiting for? Go buy a copy!

Saturday, July 28, 2012

My incompetence has reached new levels

I am a mental midget sometimes and I am very aware of this. I know I am incapable of somethings without assistance. There are many things actually - parallel parking, dealing with crawly things, opening new bottles, reaching tall things, understanding the things under the hood of the car, and the list goes on. The biggest one on the list is taking my pills properly. Yep, I have counting and memory problems.

I clearly can claim chemo brain but that is only good for the past 4.5 years of my life. Prior to that I took my thyroid medication daily for 2.5 decades. I started having those little conversations daily with myself - 'did I take my damn pill?' I was probably 80% accurate at that point. Then I discovered the joys of the daily pill box where I could combine all my pills into little daily segments easily compartmentalized. Then I was told I could not take my thyroid pill within three or four hours of my calcium pills and it had to be taken 1 hour before eating. Then things started to get complicated.

I started adding more pills - more vitamins, take calcium three times daily, take some pills at night and some in the morning an hour after taking my thyroid pill. This has varied over the years. I had two pill boxes for a while. One for morning and late morning and one for evening. My current configuration is one pill box with two little pills to take inthe morning and then take the rest sometime between dinner and bed.

This system works well if I sit down on Saturday afternoon surround by four prescription bottles and five vitamin bottles and one OTC medication plus my husbands additional prescription and extra vitamin. If I do not sit down on Saturday I have to do it all when I am groggy on Sunday morning so I prefer the Saturday option.

Last Saturday I forgot. Damn. Sunday morning I realized this upon waking up. I grabbed my two prescription bottles that I needed to take. I know I took one but can't remember if I took both. Oops. Wednesday morning I realized I forgot to take Tuesday night's pills. That happens. I have lived through that. Friday morning I realized I was some how on Saturday pills. Friday's compartment was empty. I have no idea. I must have taken a double dose - including the morning pills for Friday at the wrong time.

Now it is Saturday morning and I just took my two prescriptions out of their bottles because I took Saturday's on Friday. But I still have pills to take  tonight. I meant to take Tuesday's pills last night but forgot. So I am a day behind on some, a day ahead on others, and maybe equal on one. But I didn't kill myself (so far) by messing these up. I did have a day this week where I was incredibly sleepy so maybe that is when I double dosed my self. One of them has sleepiness as a side effect. If I miss a day on all of them its okay. Double doses are not a good idea but okay. But if I double dosed and then forgot I am even.

So maybe we will had management of prescriptions and other medications to the category of things where I am incompetent.

Friday, July 27, 2012

Telling your story

I know I have blogged about this before. You are the only one who gets to tell your cancer story. It is your body and your life and the one thing you get to choose is to whom you tell your story and when. This is a big red flag for me.

Recently this became clear. One person was ready to make an announcement with the best of intentions about another person and included their cancer story in it. The person who it was about was not happy about this. They had been purposely keeping their cancer story private because they did not want their employer to know. So the story was rewritten with out the cancer story in it.

Another time one of my neighbors who I don't know very well - just because our paths don't cross - saw me outside and came rushing over and starting asked me if I was doing okay or not obviously referring to cancer. One of my other neighbors must have told them. I don't know what was said but obviously they thought I was dying or something.

No one can tell anyone's cancer (or other icky medical diagnosis) story but the person with the ailment gets the privilege of sharing or not. So everyone else just bite your tongue.

Thursday, July 26, 2012

The FDA isn't always the bad guy.

We like to think of all the alphabet government agencies as the bad guys. They are the big brother that is overlooking everything we do, think, eat, wear, breathe, etc. But maybe this time the FDA is not the bad guy.

There is a massive problem with shortages of oncology and anesthesiology drugs in the US. Most of them are related to manufacturing problems when they are shut down for failed FDA inspections. Others have tried to claim that the FDA doesn't concern themselves with potential shortages when they cite manufacturers but that is not the case. The FDA tries to work with the manufacturers to prevent shortages and tries to get substitute drugs that are manufactured to US specifications overseas.

So where does the problem lie? In an aging manufacturing infrastructure. Hmmm.... so the same people that charge upwards of $10K per dose cant keep their manufacturing facilities up to par? I fail to sympathize here. They are supposed to be saving lives not killing people with defective drugs.

Wednesday, July 25, 2012

Pre-existing condition exclusions

Here is someone who has never had a preexisting condition:

"And I believe my state of California has a structure in place to deal with pre-existing conditions. It’s a pooling process, which I think is one worthy of consideration, because while I don’t that think someone who is diagnosed with a massive tumor should the next day be able to have millions and millions and millions of dollars in health care provided, I do believe that there can be a structure to deal with the issue of pre-existing conditions."

He is State Representative Dreier (R) of California. I'm glad I don't live there. Apparently if you have a tumor, you become a non-person because you aren't worth treating. Would that be the fate of these two people? First a little 2 year old boy  had a 33 lb tumor remove and then a 65 year old woman has a 51 lb tumor removed.

I hope this leads to his political down fall. First of all to make such a blanket statement is ridiculous. Not all tumors are cancerous that will require expensive and long term treatment. Second each person's life is valued equally. All have their rights to choose their medical treatment. Third I can't think of a third because I am too flabbergasted by the whole thing.

Tuesday, July 24, 2012

A test without a result

So yesterday was my long awaited, well not that long but it felt that way, EMG on my right arm to tell me what is wrong with it. The test is not what we call fun. First they take little metal things and tape them to your arm. Then they start zapping you to see how the nerves react. Sometimes they zap you ten times in a row in the same place. Then if that isn't fun enough a doctor comes in and does it again with needles to test your muscles. And they put all sorts of little dots on your arm with a sharpie pen.

Then they gave me the results. NORMAL. I am not normal by any stretch so I don't know how they got to that one. But this means that I do not have carpal tunnel or ulnar tunnel (in your elbow) issues. I do have tennis elbow still. I still have tingling in my arm and hands.

The tech who did the first half of the test said that arthritis could be a cause for this as well as the tingling I get in my lower left leg. This is not the first time that the arthritis word has been said. The doctor who did the second half of the test said there could be lots of reasons for tingling - lots of reasons is not helpful.

This is frustrating in that I wanted an answer to what is wrong with me. For once.

After leaving I called my primary care doctor to find out if she wants to see me or just talk to me about these results. I assume I'll get a call in the next day or two but still I have no answers. Grrr.

Monday, July 23, 2012

Medical beige has competition

A while back, in fact it was April 2010, I blogged about how medical beige is such a dreary color and does not match any skin tone. At that point I was told to wear my lymphedema sleeves at all times. I did until I found that I was getting a tan line on my wrist from it and decided my arm was feeling better. Then I didn't wear it much for a while. In February 2011 I joined a gym and shortly after realized I really should wear my sleeve when working out.

These days I wear  my sleeve when I work out. If I wear a wrist watch or bracelet, no matter how loose, for a day or two, I need to wear my sleeve for a week or so. If I carry anything semi heavy or just awkwardly, I wear my sleeve. So I have been wearing it a lot. I have many more sleeves now so I always have clean ones - in medical beige that doesn't match anything.

But then (insert drum roll) Lymphedivas discovered my blog! Happiness reigns. They sent me a sleeve to try in the design of my choosing. I had looked at their sleeves a couple of years ago and thought they were pretty and expensive and not very practical. But then I had to make a decision on what kind of sleeve I wanted. First there is the issue of color palette - something too strong would clash with too many outfits. Next was pattern - I do not like stripes, I do not want something that looks like a tattoo. There were too many to choose from! I spent a long time on their site. Finally I narroed it down to a few:

Blooming Betty was a contender - very pretty floral.

C4YW Pink was also a possibility - light pink with some texture to it.

There were a bunch of Damask patterned ones I liked.

Featherie was a strong contender as well.

Finally after going back and forth for an hour or more (yes really), I picked:
Midnight Lace - because everything looks a little better with lace.

In the box with my new sleeve and gauntlet (for my hand), was a pink nail file, a pen, a card offering me 10% off my next purchase, donning instructions (harder than you think), and it was all nicely wrapped up in tissue paper in a box. In contrast to the medical beige ones which show up in a manila envelope in a little squished box.

I did wear my new sleeve and gauntlet for a while on Saturday. I think it feels  little longer than my medical sleeves but the compression felt fine. The gauntlet is a bit shorter  from Lymphedivas - it ends at my knuckles instead of having finger holes for all five fingers.

I will wear it some more before I make any decisions. Its prettier than the others and seems to do its job. And it should be covered on my insurance - I would just need to submit a claim to the insurance company and get reimbursed I think. But since there is too much medical beige in my life, a little lace is a vast improvement.

Sunday, July 22, 2012

This is not something to argue about

A little girl in Ohio is being given a trip to Disney by the Make A Wish Foundation. Her mother and grandmother would go with her except her father doesn't want her to go. He thinks that since she is now on once a month doctor visits and through treatment for leukemia the Make A Wish Foundation should save the money and use it for a terminally ill child and he will pay to take his daughter to Disney later when she is older and will remember it.

Please, let's not argue over this. He does not understand that even though his daughter is technically considered 'cured' and can expect a relatively  normal life, she will never be normal in the sense that she will live the life of someone with a cancer diagnosis behind them. The constant worries of will it come back, will there be life long side effects from treatments, and never receiving normal medical care - always on that special list of 'because you had cancer, we need to be sure...'.

The trip to Disney isn't just for her, its for her caregivers - mother and grandmother - as well. Its a opportunity to resume some sense of normalcy in their lives with a family vacation.

The Make a Wish Foundation does not discriminate between children who have or had a life threatening disease. Its not just for terminally ill patients so they support the trip.

Lets not argue about this and let them go on their trip.

Saturday, July 21, 2012

Inequality in insurance compensation

I have often wondered why there are such inequalities in insurance compensation. What I am referring to is why is dental coverage so different than general healthcare coverage? Also, why are prescription medications so different from medical care received at hospitals.

Dental care is just as important for good health as general health care. One thing is that flossing is important in cardiac care some how. I don't know how this works but flossing is important. Oral cancers cause death and are usually found by dentists. I just find it ridiculous that dental coverage is so infrequently offered and the coverage is so poor. This is from the point of view from some one who just paid a $600+ dental bill for two fillings and two checkups - one for each of us. And we are on the Federal Blue Cross program which is supposed to be one of the best around.

Also, why are medications taken orally in pill form covered so differently than infusion type medications given in the hospital. So if you get an infection and are hospitalized and get IV antibiotics, its basically covered. But if you get a prescription for regular tablet antibiotics, you are hit with the big copay? It doesn't make sense. Especially with the recent advances in cancer treatments.

So you have cancer you go for chemo infusions and they take hours. Each chemo round costs an easy $10,000+. You go every couple of weeks. That's expensive but your insurance probably charges you a regular $20-$30 copay if you are lucky. Then you switch to an oral chemo which is a pill form that you take often - maybe every day or whatever they tell you. These are a premium brand name pill and you are hit with a big fat copay. My insurance would charge me $95/refill at the mail order pharmacy and a lot more if I got it at my local drug store. And if you got three different pills that would be three times the price. That adds up each month.

So finally here in Massachusetts there is a bill slowly making its way through the legislation that would require insurers to cover chemotherapy equally, whether IV or oral pill form. I would love to see this adopted nationally and applied to all prescription medications.

And have my dental care covered equally. (Yes, I floss every day.)

Thursday, July 19, 2012

Once again I am in avoidance mode

I am not the brave patient all the time. Well not even most of the time. I have an inner wimp that comes out when faced with large crawly things, big growling dogs, and medical adventures that do not promise to be fun.

I have had tennis elbow for over a year and a half. More than 20 years ago I was told I have ulnar tunnel issues in my elbow. I also have tingling in my hand which is getting worse regardless of how much I wear my brace- all of this is in my right arm. (Which is a good thing if it was in my left arm they would not be able to do much of anything because of lymphedema.) Its not getting better after lots of watchful waiting (I hate that term) and brace wearing and exercises. Monday morning I am going to have an EMG to decide if its tennis elbow, ulnar tunnel, or carpal tunnel and basically decide how to fix this.

Have you ever had an EMG? Its not a fun test. They stick lots of needles in you and then put little electric jolts to see how your  nerves react. You don't feel the electricity - maybe a little tingling. But you do feel all the needle pricks.

I had an EMG five years ago when I was diagnosed with bursitis in my hip I got tingling in my lower left leg and foot. I had an EMG to see if there was anything bad going on and there wasn't and we weren't sure how to proceed. Then I was diagnosed with breast cancer and that was put aside for now. I still have tingling in my lower leg and foot and bursitis.

I was told to allow 1-3 hours for my EMG. I can't wait. Three hours of needles in my arm? How fun! Not. I'll suck it up and whine a bit.

Then in August I have another fun test that I am not ready to discuss yet. I am focusing on Monday's fun in an effort to avoid thinking about the next one.

Wednesday, July 18, 2012

Doctor bias and experience

At one time there was the adage that you shouldn't get sick in July because that is when the new residents come out of medical schools and everyone is on vacation so you are stuck with the newbies. I have had my share of newbies. They are pretty recognizable. But what if lack of experience is not the problem for the established doctors but they can unconsciously be biased in their decisions.

I had never thought of this one but it is pretty clear from this article it can be a real problem. Read down to the second half of the article to see these:

"Anchoring bias, which causes doctors to lock onto a diagnosis early and disregard new and conflicting information. For example, a patient may be diagnosed with a quickly fatal cancer, but then ends up trying various (ineffective) herbal remedies and lives for 30 more years. Instead of considering whether the initial diagnosis was incorrect, the patient — and maybe even the doctor — may falsely assume that the herbal remedies cured the cancer.

Availability bias, when clinicians tend to think that the patient they are treating today has the same condition as the patient they treated last week. Imagine your doctor saw a rare, life-threatening illness last week that presented with a common symptom, such as belly pain. Today, you're in the doctor's office for belly pain, and your doctor may be unjustifiably concerned that you too have that rare life-threatening disease just because she's still thinking about it.

Confirmation bias, which causes doctors to believe evidence when it supports their pre-conceived opinion, while ignoring evidence that contradicts it. For example, let's say your doctor is pretty certain that you have an infection and orders a test to confirm the suspicion. The test is negative for infection, but she treats you for it anyway because she doesn't believe the test results; meanwhile, she disregards clues that point to another, correct diagnosis.

Commission bias, when doctors err on the side of doing something — like ordering a prostate biopsy — as opposed to watchful waiting because it seems that doing something is better than a doing nothing."

So what can you as the patient do? Ask questions, make sure things make sense to you. If you feel your doctor is biased discuss their diagnosis - ask why they think you have that ailment and what needs to be done. Why should or shouldn't you have that procedure or test? Its your job to speak up and talk to your doctor.

If you put this into context, we can all say we have had the same kind of bias in our decisions on a daily basis. But when its our health that is affected it can be a matter of life and death.

Tuesday, July 17, 2012

Best hospital - what does that mean?

US News and World Report just announced the 2012 listings of the best hospitals. There is a big hoohah going on about this year's listings as Mass General has replaced Johns Hopkins as the best hospital in the country for the first time. The listings starting in 1990 and JH led the list for 21 years. Well, yip-dee-doo-dah! What does this really mean?

Seriously? If a book is the top seller they can quantify this by looking at the numbers of copies sold. But how do you do this for hospitals? Obviously you can look at death rates, ratios of nurses to patients, readmission rates, etc.

US News states:

"Best Hospitals' central mission remains unchanged: to help those who need an unusual degree of skilled inpatient care decide where to get it, especially when there's time to make a choice. Other ratings and rankings typically examine how well hospitals perform fairly routine procedures, such as hernia repair and uncomplicated heart bypass surgery, and how successfully they manage relatively unthreatening conditions such as mild heart failure. That's fine for most hospital patients—in any given year, hardly anyone who visits a hospital spends a single night there. (There are about 20 outpatient visits for every hospital admission.) But for patients whose surgery or other care poses a technical challenge, or whose age, physical condition, or infirmities multiply the risk, good may not be good enough."

They then go on to talk about number of procedures, teaching hospitals, and more. I am not sure that I would switch hospitals based on a magazine article. Where I am treated is #7 in the state. There are six better hospitals in Boston but that involves traffic, expensive parking, breaking in new doctors, finding my way to different departments with out a road map, and all sorts of other complications.

Maybe if another icky cancer showed up, I might stop by the top rated cancer hospital and see if they have anything life saving to tell me that my #7 hospital is too far in the suburbs to know.

Monday, July 16, 2012

Years of work to get to the state I am in

I have worked very hard for many years to get my body into the shape that it is in. Its taken many years of sports - ice skating, skiing (alpine and nordic), snow shoeing, biking, hiking, roller blading, and more - to get to this finely honed 'state'. I get aches and pains all over but now its mostly in my hips.

These days my biggest problem is that I have bursitis in my hips. I have had it in my left hip for about five years. Now I have signs of it in my right hip. What can you do for bursitis? Anti-inflammatories - which I take daily. Ice - which I use regularly. And rest - which I also parttake of. I am happy to sit around and be lazy. I also have had multiple cortisone injections.

And it still hurts. But I (suck it up and) go to the gym and attempt to exercise regularly (because that prevents cancer and all sorts of other good things). It does limit me to three times a week at the gym.  I can't work out without a day off in between. If I do, I end up in a lot more pain.

What is bursitis? It is inflammation of the bursar which are little sacs located in major joints - like your hips. It is caused primarily by over use I think. Sort of what I have done to my knees and ankles as well.

So to round out the back pain which is exacerbated if I attempt to stand up for more than ten minutes at a time, my hips then hurt if I sit in the wrong position, or any position some days. I have to sleep with a pillow behind my knees so they don't pull on my back. I take my pain pills, my pain patch, and ice pack in hand, I am ready to go.

I can say I had a lot of fun getting my body into this state.

Sunday, July 15, 2012

What if they were right?

What if health care costs can be controlled? Blue Cross in MA set up a global payment system where doctors are compensated through a budget system. A doctor or medical center is given a budget to meet for the care of their patients, regardless of what tests, number of visits and everything else. If they go over budget, they need to reimburse the insurance company, if they are under budget, they are rewarded. They can save money on patients by ordering tests at cheaper facilities or reducing the number of tests ordered.

In addition:

"Physicians also earn bonuses of 2 percent to 10 percent of their budget for providing good care. Blue Cross monitors quality indicators, such as whether doctors control patients’ blood pressure, provide regular check-ups to children, and prescribe appropriate and timely medications for depression. Compared to the control group, doctors with the alternative contract improved care for chronically ill adults and preventive care for both adults and children more quickly, the researchers found."

I am glad to see this  kind of system. It proves that costs can be controlled.

But it also makes me wonder - what kind of care were these doctors providing before? Were they just ordering too many tests? Not looking at costs? I do not assume they were doing anything intentionally wrong but if costs can be controlled so easily with out any drastic cuts in services and with healthier patients overall, something must have been wrong.

Hmmm... something to think about.

Saturday, July 14, 2012

Everything you wanted to know about thyroid cancer but were afraid to ask

How much do you know about thyroid cancer? Let's start with in a lot of ways it is very different than any other type of cancer in terms of incidence, treatment, life after cancer, etc.

Thyroid Cancer Canada just released a very interesting report which summarizes the disease. Here are a few bullet points on the differences with thyroid cancer and other cancers:
  • thyroid cancer usually leads to the loss of the thyroid gland -- a major organ of the body -- necessitating life-long hormone replacement and monitoring similar in effect to some chronic diseases
  • for the most part there are no early warning signs; no means of prevention of thyroid cancer
  • neck exams can find thyroid cancer at an early stage, but currently neck exams are an optional inclusion in most standard physical examinations
  • thyroid cancer is now the #1 cancer (in incidence and prevalence) in young women
  • wait times for diagnosis and surgery are amongst the longest in the western world
  • thyroid cancer has the greatest range of possibilities in prognosis, depending on the type diagnosed
  • for some, surgery and treatments have lasting negative after-effects
  • 80% of thyroid cancer patients are women
  • overall it is very treatable, however males struck with the disease have a lower cure rate
  • thyroid cancer is increasing in incidence at a higher rate than any other cancer
  • a unique form of treatment -- radioactive iodine therapy -- is an option for the majority of patients
  • thyroid cancer has a high rate of recurrence, up to 30 years later
  • thyroid cancer patients impacted by low number of resources, and inequitable distribution of tools across the country, including PET scans
  • there is a high rate of bankruptcy amongst thyroid cancer survivors
  • only 0.1% of cancer research dollars are invested in thyroid cancer
While the focus of the numbers in the report are for Canada I think we can assume it pretty much parallels the rest of the world, including the US.

Thyroid cancer is unique in many ways summarized as follows:
All Cancers Thyroid Cancer
Treatment ~60% of cancer patients are treated with radiation therapy such as External Beam radiation (EBR)5 Less than 3% of thyroid cancer patients have EBR treatment
More than 50% of cancer patients receive chemotherapy Less than 2% of thyroid cancer patients receive chemotherapy
0% of non-thyroid cancer patients receive RAI treatment ~60% of thyroid cancer patients receive RAI treatment
Specialized Diagnostic Tools Thirteen types of cancer have a oncologic indication for PET Scans, internationally Thyroid cancer is one of only 4 cancers on the PET Registry in ON, yet ON has amongst the lowest number of scans per population
Age 53% are more than 55 years old Median age is 40 years old
Gender Cancer by gender ratio: women/men - 48/52 Thyroid cancer gender ratio: women/men - 80/20. Relevant Survival Ratio: 98% survival for women, drops to 94% for men
Life Sustaining It is possible for a person to live with the loss of some organs (due to cancer) and function normally otherwise (ie. not require medication to mitigate the loss) such as with the loss of: one kidney, part of the reproductive organs, part of the liver, part of the intestines, breasts, etc. The thyroid gland is a major organ of the body. Patients cannot maintain life without a thyroid gland or in its absence, replacement hormone (T4) taken in pill form; with need of frequent monitoring. Therefore, even with a good surgical outcome and excellent prognosis, a thyroid cancer diagnosis is akin to a chronic illness

Its very different than many other cancers, it is also rapidly increasing in incidence and has the least amount of research. Maybe I should become a lab rat and help them.

Friday, July 13, 2012

Life after cancer treatment

A study in Sweden (because we needed another study) shows that 72% of women return to full time work after cancer treatment. The biggest factor in this seems to be those who had chemotherapy are less likely to go back to work.

I am not in the 72%. I work less than I did before. My situation is a bit unique I think. When we got married in 2005, I was working in downtown Boston. My husband would drop me off at the bus stop on the corner (thus motivating both of us to get to work on time). I would commute by bus and subway into Boston. By the time I got home, he would already have been there for at least an hour - thanks to his 10 minute commute. He would be relaxed and rested and I would be stressed out and cranky.

In the fall of 2006, I decided I had enough of my crabby boss who motivated people by yelling at them and decided to find a job closer to home. I started a new job in January 2007 and was laid off in May 2007 - two weeks before my diagnosis.

I quickly realized I could not job hunt while going through surgeries and chemotherapy and returned to a part time job at a local community education program that I had in the past. I stayed there for a few years and added a second part time job and left the community ed job and found another job. Now I work about 30 hours/week split between two part time jobs. I commute about 30 minutes each way to one and the other uses my living room sofa as my desk with my feet up on the coffee table. My cat is my office mate. This keeps me happy.

Juggling the two jobs allows me the flexibility to go to the gym three times a week, doctor appointments, coffee with friends, etc. Today is an example - I am getting my nails done (a very important meeting), then I have a meeting for my development job, and then am meeting a friend who lost her job for some networking. I'll be out until about 3 pm (note to burglars, the cat will be home so don't even think about it) when I'll return home and work a bit more.

I am actually using my brain for both jobs - they aren't just 'fill-in' jobs. The first one is a marketing job which is most of my background where I am in charge of websites, trade shows, out bound marketing, print materials, and all that other stuff marketing communications people do. I have had it for three years. It also gives me flexibility so I don't commute in snow storms or when I have (stupid) doctor appointments. The other job is development, fundraising, and outreach for a non profit where I plan events, write grant applications, and all  kinds of other fun stuff. I've been doing this for over two years.

I think I can handle not being in the 72% but I am not sure chemotherapy was my sole force in these changes. My marriage certainly made me feel stabler about working part time. My back probably would have gone bad anyway and who knows if I would have had all my other medical problems. I probably would not have gotten lymphedema with out my cancer surgeries. But for now, I see no reason to return to full time work. I could if I needed to but I think I'll stick with this for now.

Thursday, July 12, 2012

Medically induced tan lines

Its bad enough when you wear shorts and a tee shirt outside frequently enough that you end up with a farmer's tan. But then when you add in medically induced tan lines you start looking really weird.

I have a lymphedema sleeve for my left arm. I goes down to my wrist. Supposedly you can get sun exposure through it and should wear sunscreen even if you are wearing a sleeve. I don't know what they are thinking. I get a tan line on my wrist.

These days I am wearing a wrist splint for carpal tunnel/tennis elbow on my right arm. I am starting to get funny tan lines on the back of my hand and where it ends just below my elbow.

Finally, I have these wonderful little pain patches that I wear for my back pain. They are about 1.5" x 1.5" and I have to wear them on the corner of my chest near my collarbone, on the back of my shoulder, on the outside of my shoulder, or on the side of my chest. I have to rotate them each week and cant repeat the same place for three weeks. And I can't wear them on my left side because of lymphedema so I am kind of stuck rotating through the four spots on my right side. And you really can't pick one up and move it around during the week.

This is beach season and I am out in the sun. I went to the beach last week with my patch on the back of my shoulder. I think I have a tan line. This week it is on the front of my shoulder and I might go to the beach again this weekend. That might mean more tan lines. I am starting to look like a weird zebra or something or that I am developing a skin condition.

Back when I was a healthy person, I was only worried about farmer tans.

Wednesday, July 11, 2012

Lack of health insurance kills

On July 3, a 30 year old woman died from breast cancer, just over a year from when she was diagnosed. She had found a lump and didn't go to the doctor because she had no insurance. When she finally went she was diagnosed at stage III. The she became stage IV in December even though she had treatment. Her colleagues rallied around her and helped raise money for her medical costs.

This young woman was actually a clown porn star and relatively famous. While her profession is certainly one which I would not have chosen, she should not be judged on that. It only matters that we need to prevent these stories from occurring.

Tuesday, July 10, 2012

Vitamin D

Take calcium and Vitamin D as you get older, blah, blah, blah. Just some more stupid advice we need to follow to keep the vitamin companies in business. I have osteopenia which is getting worse over the years. My mother, aunts, and grandmother all have osteoporosis. My grandmother and one of my aunts also broke their hips.

Between the thyroid non-existence (which I think has impact on calcium absorption) and my family history, as well as being on Femara and a few other of my ailments, I have had bone density tests for more than five years now. The most recent one showed progression of my osteopenia. I do weight bearing exercises three times a week. I take calcium and Vitamin D. The next step will be some kind of medication. There is hope that once I am off Femara my bone density will come back a bit.

So as I diligently take my 3 calcium/Vitamin D tablets each day, I am hoping for the best. I take all three tablets together even though you are supposed to take them spread out. I tried that it meant I forgot to take usually two of them - my brain couldn't handle that many pill takings in a single day.

Now this new study has come out (because we needed another study) that shows that you need to take 800 IUs (International Units - whatever they may be) of Vitamin D for it to make a difference in preventing bone fractures. The article only came out last Wednesday and it has taken me nearly a week to finally remember to check my vitamin bottle to find out that I have been taking 1200 IUs of Vitamin D all along so at least I am doing one thing right.

Its nice when a study confirms that what I am doing is mostly right for once.

Monday, July 9, 2012

Pain levels

About ten years ago, I had a good day of skiing go bad. What I mean what started as an awesome day of skiing ended up with a toboggan ride down the mountain and knee surgery. Upon learning the news, my father said to me 'now you will have a knee that tells you the weather'. I don't really have a knee that tells me the weather or so I thought.

There was a new medical study (which we needed to keep researchers busy) which says there is some merit to this theory. I don't know about this one. My knee doesn't really tell me the weather and my back hurts regardless of the weather. Last week after overdoing it for two days in a row, my back hurt regularly and the weather around here was pretty good.  But maybe I overdid things. This week I will be more careful because I have to work. I was having fun last week. Damn.

Anyway about the pain levels, my new pain patches are pretty good but I can still get into a lot of pain. Yesterday I attempted to go to the gym. I had to skip some things I normally do because my hips hurt too much. That pesky bursitis. If one thing doesn't hurt, another thing is sure to.

What doesn't hurt requires support. I have a wrist splint for carpal tunnel/tennis elbow and a lymphedema sleeve. When my back doesn't hurt my hips and SI joints do. I have a I just hobble around from doctor appointment to doctor appointment.

But other than that I am a very healthy person.

Sunday, July 8, 2012

Technology is winning

I am doomed. Yesterday I was 'working' away on my laptop (while catching up on my Lifetime movies - it is really weird to watch a Lifetime movie about a serial killer and realize they have the same sheet set as we do) when my internet connection died. I summoned up all my tech skills (I did used to back up our IT manager when he was on vacation so I am not (that much of) an idiot about these things). I did all the things I should - checked the other computers, ran anti virus, rebooted modems and routers, checked plugs, call the Internet provider, and finally figured out the router died. It was seven years old and came with a 1 year warranty and probably cost $30 so I guess I got my money's worth.
I had to live with no internet. I mean I can check messages on my phone. I can read books on my nook. But I can't work and keep up with Lifetime movies simultaneously. The world has come to an end. I had to mostly unplug myself.
I can't check email in bed and write my blog. I have to suffer with my husband's computer which is DOWNSTAIRS. It means I can't sit in bed and be comfy while blogging. I am SUFFERING I tell you. His computer keyboard has all the important - non letter keys - in the wrong places. This makes it very difficult to type.
Staples opens at 10. I will go to the gym first thing and then go to get a new camera battery at 10 and then go to Staples for the newest, cheapest, top of the line router. Then I will put on my technical beanie with a propeller - (just kidding about the propeller) and install a new router. The reviews claim it is easy to install. I think that means I can get it done in a few hours. My husband is not a candidate to assist with this. I am our techie here. I will suck it up and then start swearing later if it doesn't work.
I think us cancer people should get free tech support anytime we want. Grr.

Saturday, July 7, 2012

And the world didn't come to the end

So when the Supreme Court upheld the health care reform law (whether its a tax or not is still up for debate) and the world did not come to an end. I know there has been a lot of hate mongering on the topic which is supposedly somehow related  to the president's citizenship to some people.

But now more people will be able to get health insurance. Recently there was of those stupid slide show news stories (because evidently the media thinks we need our news in slide shows and can't read articles) that listed the percent of residents of each state without health insurance. Massachusetts, with its state law, has the lowest rate of 5%. Texas has the highest rate of 25% which I found to be amazing. According to our friend Google, there are 26,403,743 residents of Texas. That means in Texas alone there are 6,600,936 people without insurance. I find that amazing.

I realize some people go with out insurance by choice. While I do not agree with it, I respect their decision. But I am sure that the vast majority of those 6.6 million would like to have insurance and either could not afford it or the insurance companies rejected them for pre-existing conditions or whatever.

Anyway since the world didn't come to an end, I am happy to wait and see what the changes really mean. I also hopes it has a chain reaction effect on the rest of the health care industry. And how the 'poor' insurance companies will have to adapt.

Friday, July 6, 2012


Back before cancer #2, I was the obedient patient and obeyed orders without questions,  took my meds and came back for appointments as requested. I don't do that any more. I ask questions and want explanations for things. It turns out I am not alone.

A few weeks ago I got together with a bunch of friends who all had been through the same breast cancer support group with me five years ago.  One of them is now dealing with another cancer diagnosis. We were out to dinner and talking about treatments and doctors and our opinions. We amazed ourselves at how outspoken we were. We were telling our doctors what we want for treatment, protocol, testing, and much more.

But we earned this. We have been through enough scans, tests, medical adventures, and other fun, we know what we are dealing with and want it on our terms.

Thursday, July 5, 2012

Did cancer make me paranoid?

I actually started this blog post over a year ago and in an effort to clear out unposted posts, I am finally finishing this one. Apparently I am still concerned that cancer made me paranoid. Am I always assuming the worst with every medical issue? Yes, I do. Its not just a sprained ankle, its a life long problem ankle that refuses to get better. It doesn't help that I keep respraining it.

But did two cancer diagnoses always make me assume the worst from my doctor appointments? Sometimes yes. Its called welcome to the 'its-not-a-headache-its-a-brain-tumor' world.

A cancer diagnosis makes you overly concerned over every little ailment. Especially the ones where your doctor looks at it and says 'hmmm.... this is very unusual'. I dont really have any of those right now. But I do have the ones where my doctor says 'let me talk to your oncologist and get back to you on that' and 'lets wait a month and see how things are going'. But I don't think I'm overly paranoid, may be just a tiny bit.

Wednesday, July 4, 2012

Looking for my oomph

I seem to have lost my oomph these days,. I have no idea when I lost it but it is clearly missing. If I attempt to be a normal person I end up paying the price - in pain and exhausted.

Yesterday I went with my brother and his two younger kids to the Museum of Science in Boston and then we went to the beach and walked all over both places. I knew I was running out of oomph walking on the beach but I was a long way down the beach and had to walk back. Then my family came over for dinner.  Then I went to bed early.

The day before we went to Maine for my uncle's funeral. I drove a round trip of 240 miles. And we went to the service, the grave side service and then the reception and then my parent's for dinner of take out pizza.

Today I have no oomph. It cannot be found. It is almost lunch time and I am just getting to my blog. Usually I am on it first thing in the morning. But I made bacon and waffles for everyone. My husband suggested taking me out for lunch, but I am too tired. I don't know that I will go anywhere today at all. Even may stay home for dinner.

I would like to find my oomph by tomorrow so I can go sailing. But that may not happen either. My oomph may not return for a few more days. Grr.

Tuesday, July 3, 2012

A really big fine but did they learn anything

Horrors! Glaxo SmithKline was fined $3 billion (that's with a 'b', not an 'm' folks) for marketing drugs for purposes for which they were not approved and for paying doctors kick backs to prescribe these drugs. $1 billion is for the criminal offenses and the other $2 billion is for the civil liability.

Kick backs and illegal use of the drugs. And apparently they are not alone in these practices. According to their website their annual sales are in the range of $28 billion so this is going to hurt them. Unless they have some fancy insurance policy which covers this.

There are laws in place that are there to prevent this. I hope that this shows that there are teeth behind the law and that other companies cease these practices. Not to blame GSK solely but we do want to assume the laws are in place to protect us patients.

Monday, July 2, 2012

Moving on from cancer

I have noticed in recent months, make that years, that I blog less and less about cancer and my medical adventures and more about cancer and research and treatments (and other people's stupidity). Its not that cancer is less important in my life but that it stresses me less. I do have impending doctor appointments that make me cringe. Who was it who said that going to the oncologist is like visiting your parole officer, you never know when they are going to yank you back into some kind of hellish prison?

I only visit an oncologist four or five times a year. My radiation oncologist and my medical oncologist like to see me twice a year. My surgeon's office likes to see me once a year and will be in charge of my mammograms for life. My endocrinologist likes to seem me twice a year. That is like visiting an oncologist because she is there for thyroid cancer. So I guess I was wrong 2+2+1+2=7.

They like to have their visits nicely spaced out as well. This spring I was a bad patient and saw my medical oncologist and my radiation oncologist on the same day. One appointment was rescheduled a few weeks after it should have taken place and another one I moved up a few weeks because I wasn't available when it was scheduled. They didn't like that - I got that message. I was just trying to fit them around my schedule. Instead of sticking to theirs. They like to see me every couple of months to check for those pesky cancer cooties in their own way.

In general my cancer stress level is a little lower than previously but its still there. You can't erase two cancers. Stephanie, over at 'Bah to cancer' announced this morning (in England so she is up earlier than me) that she is moving away from cancer defining her life and on to other things. She does phrase things pretty well but then she's a writer. I am not. I am a mere blogger.

Cancer doesn't define me more than it has shaped my life. Will I move too far away from cancer? Probably not.

Sunday, July 1, 2012

But I don't look sick

When people see me who don't know my health disasters, they probably don't think I have anything wrong with me. Well that just goes back to the fact that appearances can be deceiving. Have you ever hunted through a parking lot for a single space and then seen a seemingly healthy person park in a handicapped spot in the front row and stroll into the store while you drive in circles? They may have a respiratory problem which prevents them from walking long distances or some other ailment that does not have visual symptoms.

Us cancer people may be harboring some nasty things inside but usually don't look too bad - unless we are sporting our chemo 'hair cut' and pallor. At our first diagnosis, while we are waiting for surgery, treatment, and full staging, we may look as healthy as can be even if we contain multiple tumors.

Now I go to a gym where its full of healthy looking, dilapidated people. I was speaking with one of the owners recently and he said everyone there has significant health problems. But most of them, unless they are on oxygen, a walker, wheelchair, missing a limb, or other obvious ailment, look pretty darn healthy because they work out. Recently I went  hiking and was pleasantly surprised at how well I did on a very hot day. It shows my regular work outs are helping me significantly.

But if I compare myself to most of my friends and colleagues, I have more health issues alone than they all do combined. But at least I don't look sick.

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...