Heebee jeebees!!!!

Do you ever wonder about new cancer treatments and their potential side effects? As medical research capabilities advance, so do the weird things they do to our bodies. Surgery used to be where they cut you open and take out the bad things. Now they leave little markers behind or radiate you (intraoperative radiation) while you are sleeping.

I just found out that herceptin is not a medication in the sense that its something your body absorbs and uses. It is nanotechnology- meaning it is a created little thing that is infused into your body where I assume it decays and goes away.

Nano particles sometimes are used as carriers of medicine but I hope  they leave your body asap. I mean what if they stick around and hang out in your liver or something. What kind of problems might they cause later????

I have a surgical marker implanted in my left breast to prevent confusion on the part of radiologists when they look at mammogram readings to say 'this part isn't cancer so you can ignore all this little disaster'. When they put it in I wasn't concerned.... but now as I think about it, will it ever rot or decay? Now it kind of gives me the heebee jeebees that it is still there.

What else do I have in my body? Not much but as new research comes down the pipeline, I hope nothing gets left behind.  

Not a practical option

Earlier this week, or maybe it was last week, I saw several articles on this new intraoperative radiation for breast cancer. This is when a radioactive probe is inserted into the breast during surgery and allows the patient to skip traditional radiation. Of course, they may still need chemotherapy and other treatments.

The first articles I saw touted its benefits. I was a bit pessimistic about this. I have heard about it and think it is approved in the US (but I am no doctor so don't think I know all about this). It is only for certain early stage breast cancers so it is not for everyone.

The reason for this hype is that it was just approved in the UK's NHS. And then I just saw this article about a UK doctor's thoughts on this:

"The treatment, given approval for NHS use in draft guidance by the National Institute for Health and Clinical Excellence, would benefit up to 36,000 people nationwide.

The technique, called intra-operative radiation, is suitable only for patients who have caught their cancer early..."

"...The initial price of the treatment is expensive, with each probe costing £500,000.

The procedure is performed during surgery.

Once the tumour is removed, a probe is inserted into the breast and delivers radiation to the site of the cancer for about half an hour."

That is when I fell off my chair. Am I understanding this correctly? Each probe costs  £500,000. Clearly it must mean the entire big instrument. Not just an individual probe. But I can't tell for sure based on how the article is written.

If its £500,000 for a single treatment, that is crazy. And if the machine costs £500,000, that's just damn expensive. Not a practical option in my opinion.

Talking and working out

Yesterday afternoon at the gym, I got to talking to two other women (this is a common occurrence to stop and chat) on the topic of getting into shape/staying in shape while dealing with ailments. One woman is just done with chemotherapy again for chronic recurrent ovarian cancer and is new to the gym. The other woman has osteoarthritis among other problems and has belonged for five years or so.

The woman with ovarian is trying to get back in shape so she can go on a three week vacation to Turkey and Spain. She said it is quite difficult quite understandably to get some muscle tone again. I shared that I had been diagnosed with RA and fibromyalgia since joining the gym plus two cancer diagnoses as well. They both said they were impressed by what I could do in my workout. I said I thought I was in better shape at my diagnosis because I had already been going there regularly.

So the discussion quickly turned to the important of working out before a life changing diagnosis and after the diagnosis. All of us agreed going to the gym was important and helped us greatly. The third woman with osteoarthritis had  had a lot of back pain before working out. Her improved muscle tone had helped her a lot and helped get rid of a lot of pain.

Then the conversation came to the benefits of swimming. All of us agreed we could not be paid enough to swim laps. One woman dog paddles, the other woman had her face pushed in the water by an instructor as a child and never learned to swim. I just hate swimming laps. So all of us agree the gym is  a great way to get in shape but you won't catch us in the pool.

So while talking and working out, I learned a bit about others and how we can all agree on different things.

PS this is a lame post today. I know it.

Getting even or driving your doctor crazy

We all try to be a good patient. We try to eat better foods, less red meat more chicken and fish, get 8 hours of sleep, drink less, brush our teeth, floss, yadayadayada...

Huffington Post conveniently posted a list of 9 things that drive your doctor crazy:

1. Dr Google - we all know Dr Google is an idiot.
2. Refusal to vaccinate - which has caused more problems later on
3. Demanding antibiotics - they don't fix everything
4. Claiming you are eating less and working out more but still not losing weight - obviously you aren't
5. Asking for a quick fix - there is no magic pill (I know this because I ask regularly)
6. I only eat low fat - low fat is good but some fat isn't bad
7. I don't have time to come in - really? You have time to go to the gym, work, out to dinner, etc.
8. I can keep smoking as long as I exercise - They don't get it
9. I don't eat carbs - don't demonize a whole group of food. Whole grains are carbs but are good ones.

Now that I have this in mind, I can get ready for my rheumatologist appointment this morning. I haven't asked Dr Google much about RA recently so I am probably good. The rest probably won't come up. Except for the magic pill issue... I just ask to make sure nothing has slipped by me.

But I have 1:58 left to come up with my list of questions for her.

I swear they make this stuff up!

The latest breast cancer research says that sleeping in a dimly lit, as opposed to dark, room may interfere with how tamoxifen works. Really? They tried it on 12 rats. Yep. So now is news worthy.

So now you are supposed to have room darkening shades or convince your local community to turn off the street lights. I'm not buying it. Even if I was still on tamoxifen I would not believe a 12 rat study. This is why they always say more research is needed.

Or they just make this stuff up.

Did chemotherapy change your body?

A week or so ago, I had asked a doctor about change in your body due to chemotherapy. A friend and I had the same discussion yesterday. Does chemotherapy change a person's body in more ways than we think?

I am talking about food and medications to be specific.

Before chemotherapy, I enjoyed all kinds of seafood - preferably cold ocean water seafood to be precise. Shrimp, lobster, clams, oysters, scallops, cod, haddock, hake, salmon, calamari (octopus), and more. I never turned it down. Now I hate shrimp. I won't eat them. I can't stand them.

More importantly are medical allergies. Before chemo, I was told I was allergic to amoxicillin and penicillin (full body rash and hives on an international business trip). I also reacted to the codeine in my pain meds after knee surgery. At my first chemo infusion, I learned I was also allergic to benadryl. Since chemo I have found I am allergic to:

• prednisone - also used to treat RA flare ups as well as allergic reactions
• plaquenil - an old school RA drug
• voltaren gel - anti inflammatory used to treat specific areas of pain and inflammation with RA
• adhesives - as used on pain patches

I was given both prednisone and plaquenil at the same time when first treated for RA. I reacted to both. At the same time. How (not) fun.

And as a result in being allergic to the 'cillins' I have a problem with any potential dental infections. There are four drugs commonly used to treat dental infections. Two are cillins so I can't have them. One is something else that I can't remember what its called (chemobrain) that conflicts with one of my other medications so I can't have it. The last one is super strong and is only used as a last resort. We'll just say I am limited.

If I get a basic cold, I can't take an antihistamine because of the benadryl allergy. Also, I can't take a lot of the others because of the lack of thyroid issue.

I am petrified of concerned about any allergic reactions. They seem to become more and more frequent as time passes. And since I can't be given steroids or benadryl for allergic reactions, there are other drugs which I can take but not the first line treatments. this is one of the reasons I always want to go to the same hospital which has all my medical records. 

But I digress, I think my body changed because of chemo because foods that had appeal no longer do and it seems much more sensitive to medications. My friend also has experienced similar issues. Are we the only ones? I don't think so. And I wish they told  us before chemo that we could expect these changes.

Medical guidelines discovered

Yesterday, in my usual scouring of the internet for the magic cure for all my ailments, I found an article about variability in cancer treatment and compliance with guidelines. Its an interesting read and how to make sure you are getting the right treatment with second opinions, good insurance coverage (plan ahead), yada yada yada.

And then I asked myself, what guidelines? I have always assumed that some little group of doctors got together and over a few beers put together their guidelines for treatment for each ailment. Little did I know that NCIC provides guidelines for treatment of all cancers. Some of them are even available in patient format - meaning readable in by normal people who did not go to medical school. You can see the treatment guidelines for stage I and II breast cancer here.  And a list for all available patient guidelines by cancer type.

I cannot tell you how cool this is. How often have I wondered about my treatment plan, was it in compliance with guidelines - meaning did it give me the best possible treatment? It was a lot of good reading and I want to review it all.

Then if you go to the link for clinical practice guidelines, at the very bottom of the page is a link to all guidelines which takes you here for even more reading but it quickly becomes a bit technical because it is aimed at doctors. Feel free to start deciphering.

Finally, there was a link to the guidelines for other diseases - meaning not cancer - which are at the National Guideline Clearinghouse. These are uber-cool. I immediately looked up RA and will move on to fibromyalgia shortly.

So do not click the links unless you have a few hours to give yourself reassurance that your treatment plans are correct. They will suck you in quickly. I am going to work an hour late because I got a tiny bit side tracked.

The word for the day is "Ow"

On a scale of 1-10, how is my pain today? Probably about a 4, all over my body. With spots of 6-7 in certain areas.

I don't know why but for the past few days my body has be very achy and sore. I have been living on Tramadol again. I hate this. I prefer not to take pills if I don't have to. I mean I do take a lot of pills but prefer not to take any more than needed. And since everything hurts, I need tramadol to survive without rampant crankiness.

And to start my day I have a dentist appointment. This is where they will go in and pick at my teeth with sharp metal objects. Its a new dentist office but not a new dentist. The dentist moved to a new office so we followed her. Apparently the hygienists are very 'good' at cleaning and whip the patients into shape. I can't wait.

This is where I also talk to the dentist about not getting a crown on my root canal until January when we will have dental insurance. Its been a month and it hasn't been a problem so I want to wait. I'm cheap. Actually I just don't want to pay for a crown right now if I can wait and get one through insurance. I already paid for the damn root canal.

To recover from the dentist, I will go to the gym. To recover from the gym, I will go to the grocery store. But not the grocery store which is on strike right now.

First things first, I will go take a tramadol, and then take a shower, and brush my teeth after breakfast.

Does blogging=journaling?

I just read this article about the benefits of journaling - taking pen to paper. The claims are it benefits your immune system, blood pressure and lung and liver function as well as allowing the right side of your brain to be creative.

It also gives tip for getting started. But I've clearly already started. As long as blogging equals journaling. While I am not putting pen to paper, I am putting hands to keyboard and my right brain is working (I hope).

The tips given are:

• write consistently
• consider starting each day writing
• never self edit
• write about the good, the bad and the ugly.

I would add to that -  if you have a brain like a sieve (like me), you can go back and read what you wrote so you can remember what you actually did that day. And ignore whatever your high school English teachers told you. Mine told me I couldn't form a cohesive paragraph and would never be a writer. But she was old and cranky too.

Medical errors - and what if they didn't tell us?

Massachusetts General Hospital archives

Dr. Ernest Amory Codman.

We all are aware that, unfortunately, medical errors can and do occur. A recent example is of this New Zealand woman who was never told of her Her2 positive diagnosis for two years and didn't receive the correct treatment until it was too late.

But what if doctors never told us about treatment outcomes and what their error rates were? That would be pretty damn scary. No one likes to admit they made a mistake but as 'to err is human', it does happen.

But that's the way things used to be:

"Dr. Ernest Amory Codman was in his mid-40s when his golden career as a sought-after Harvard surgeon began to unravel. He had quit in exasperation from Massachusetts General Hospital, and when he took his dispute with hospital leaders public, colleagues turned against him. Many stopped sending him patients.

It was the early 1900s, and Codman was impatiently pushing hospitals and doctors to adopt a practice many considered heretical at the time: Record the “end results’’ for every patient — including harm caused by physicians’ errors — and make them public."

But now his work is being recognized:

"A century later, many of Codman’s ideas are the bedrock of modern medicine. And a group of doctors, including a former Mass. General surgery chief, plans to make sure he gets the wider appreciation he deserves this week." 

His work has led to many changes in medical practice, even if he wasn't appreciated during his life time. You can read here the whole story here but think of what medical practice would be like with out people like him pushing for change.

Specialty Drug Prices are Killing the Patients

I know I have blogged about this before but it just irks me of the inequalities that I see in this system. I do not have a grudge against big pharma. I really do not. I just wish there was more change in the system where drug companies seem to be tightening the noose on patients who are trying to survive.


Is your life worth $100,000 annually? Can you afford $1000 monthly in drug copays? If you ask the big pharma companies, it is. The majority of the new drugs approved last year by the FDA are specialty drugs, 19 of 28 (which is an appallingly low number of approvals to me but that's another story for another day). These come with the hefty, specialty price tags.

"Fewer than 4 percent of patients use specialty drugs, but they account for 25 percent of total drug spending in the United States; and the growth of specialty drugs is a key factor driving up health care spending, according to PricewaterhouseCoopers."

Many insurance plans provide affordable co-pays for the drugs. But more and more, as a cost saving effort, are switching to tiered plans. I have one where generics are very cheap but brand names drugs can be very expensive. They can be 35% of the retail... I can avoid much of that by mail order but still when one month of one drug has a co-pay of $105, it begins to add up. More and more insurers are moving to this type of coverage as they cannot afford to keep up with the new drug prices. I do not blame them with the costs of these drugs.

We have an industry which is full of employee perks and generous salaries and we have insurance companies who are trying to balance their budgets and patients who are being killed by their drug payments. Where does that problem lie?


This system needs to change. Its not all the pharma companies fault, there is some blame to be borne by the insurance companies as well. Moving costs to the patients is not the best option either.

Sleeping, or not

I have problems sleeping these days. On a good night, I get to sleep for a solid 12 hours. I'm not kidding. I hope to do this once a week at least. Not this weekend. If I can, I save my big sleeping nights for the weekend because I don't have to get up in the morning.

Friday night I slept from about 10-330. Then I dozed off and on until 6 when I gave up and got up. Last night, I slept from about 930 to 4. Then I couldn't sleep so I played games on my phone (because my phone was nagging me to get caught up on words with friends) for about half and hour and then dozed for a while and finally got back to sleep for a bit. I am feeling a bit sleep deprived as a result.

I have spoken with my many doctors about this and my PCP said she wants me to have a sleep test to figure out if I have apnea or other issues.

Sleep tests can determine other problems as well. According to Dr. Wikipedia:

"Polysomnography is used to diagnose, or rule out, many types of sleep disorders including narcolepsy, idiopathic hypersomnia, periodic limb movement disorder (PLMD), REM behavior disorder, parasomnias, and sleep apnea. Although it is not directly useful in diagnosing circadian rhythm sleep disorders, it may be used to rule out other sleep disorders."

My PCP said that now they do sleep tests where they send you the machine at home and you can sleep in your own bed. However the hospital set me up for an overnight sleep test there. They claim the room is like a motel room. I hate sleeping in motel or hotel rooms by myself. I want my husband there to protect me from intruders and scary monsters or zombies. I also want the cat. I'm not sure I can bring either.

I got the schedule in the mail late Friday afternoon when it was too late to call. Then I got the information brochure in yesterday's mail telling me all kinds of useful information. Dress in comfortable clothes - not pajamas. It doesn't sound like you can wear pjs. They do not have shower facilities either.

I like this part where it says if you drink every night you should do so before coming - but you can't bring any alcohol and you must have a driver bring you if you are drinking. LOL. I find it funny that they specify this. Obviously some have driven drunk to the sleep test or brought in a bottle or two.

But I don't think I can get sleep there which is the whole point of the test. And what if I want to gt up and pee in the middle of the night?

First thing Monday I will call my insurance company and make sure they cover the test at home instead of there. Then I will call the hospital and see about having a home test if I can and ask all my other questions - can I bring my tablet to read a book on before sleeping? What about PJs? What about bathroom visits? Lots of things to know.

All I know is I need to sleep more. And this might help.

Lack of sleep causes both crabbiness and crankiness.

Why do I bother to ask these questions anyway?

This week I saw my oncologist for my annual check up. I am happy to only see her once a year... Except when I nominated her for an award last winter or when I ran into her in the hallway at the hospital. So, I, who am never afraid of the direct question, asked her "so what are my chances of more cancer?". Why not ask? I would prefer to know what can be known. This little question of what could be coming in the future has been irking me for years.

The answers I got were:

• Even with my medical history of two cancer diagnosis and family diagnosis of a parent with cancer, there is no way of knowing if I am likely to get another cancer. If there was some genetic predisposition that would be different but there is no way of knowing. People who get cancer once, are more  likely to get another cancer. People who get cancer twice, are more likely to get a third cancer. Et cetera. Not very helpful.
• The chances of having a thyroid cancer recurrence are still out there but not known. It has been known to recur decades later.
• The chances of having a breast cancer recurrence since I am still on Femara (Letrozole) are somewhere around 6%. She ran my data through a computer model and got the magic number.

We talked about it a little... And then I left. And then I realized, so what does 6% mean?

Does it mean I have a 6% chance of recurrence? Or that my chance is 6% greater than the rest of the population of getting another breast cancer? I just have to accept there is a 94% chance I will not have a recurrence.

Why do I even bother to ask these questions? Did it get me anywhere? No. I guess I am asking questions that have no answer. Damn.

VA Hospitals

The message here is do not go to a VA hospital. Especially for cancer care.
I find this appalling. We send men and women off to war and they are supposed to receive their medical care at VA hospitals around the country. What do they get? Poor and delayed care. And this results in deaths. The waits are twice what they are at other hospitals.

The saddest part of the video above is that there are probably so many more stories like this.

What is going on at the VA hospitals? Bureaucracy? Paperwork? Employees who don't care? No sense of urgency? I don't know but you won't catch me near one. Yesterday I blogged about the best hospitals, now these are some of the worst as far as I am concerned.

The Best Hospitals

US News and World Report just released its annual list of the best hospitals in the US. The hospital I go to is not in the top ten.

And I am not concerned. I mean what is the benefit of going to one of the top 10 hospitals inthe US? My bet is it comes down to two issues:

• More expensive bills
• Longer waits for appointments.

I have been told by someone who worked at one of the big name Boston hospitals that unless you are related to a senator, you can expect a long wait to get in to see a doctor. And a recent study of Boston hospitals showed that the big name hospitals offered the highest fees.

With all my medical crap, I am very comfortable with the medical care I receive at Lahey Medical Center which is ten minutes from home.And that recent study of fees in metro Boston put it near the bottom of that list.

My only complaint with the hospital is that I am there too damn often.

The mammogram benefit discussion

There have been a few (thousand) discussions on the benefits of regular mammograms in the past few years. There are all sorts of claims on the problems of false positives, over diagnosis, false negatives, and all that.

So stop the presses and read the results of this latest survey. Its a bit of a statistics lesson so allow me to break it down with my stellar liberal arts education and marketing background

This survey looked at the incidence of breast cancer and the increased diagnosis trend from 1941 on. The first half of the time studied was from 1941 to the 1970s before mammograms - the base data.* Then it looked at the rates of diagnosis from the 1970s to the present.

What they could tell from the base data is the trend in increase in breast cancer from increased environmental or whatever factors and got their base rate of increase of 1.3% annually - or the expected rate of increase in breast cancer diagnosis. They also got their percentages of expected diagnoses of early and late stage diagnosis.

Then they looked at the date from the 1970s to present. What they then determined is that since the introduction of mammograms, the proportion of diagnoses of early stage cancer are up significantly and there is a 30% decrease in the expected rates of late stage diagnosis.

That is the benefit of mammography. The 30% decrease in late stage diagnosis. If you wish to debate the benefits or lack of benefits of mammography, please figure out a way to dispute that point.

*My 1981 cancer resource book from my first thyroid cancer diagnosis does talk about how mammography was being considered for annual screening for all women.

Living a better life

I have decided I need to take steps to improve my life (well our lives because this includes my husband). This has taken some thought to get here but I have come up with these:

1. We need to eat better. I talk about it. I try to but not there yet. I can tell this because of my bulging waistline. My husband has a similar problem. More vegetables and grains. Less fats, etc. You know all of that but there is always room for improvement.
2. We need to do more things together. Last weekend we on a day trip adventure to an ocean front state park in New Hampshire, just over an hour away. We walked on shady trails, sat on the rocks and watched the ocean roll in and admired the view of the offshore islands and closer lighthouses. Then we went for a late lunch, a little shopping and home. I have already planned our next trip in a few weeks. We need time at home this weekend to get some things done. Besides it would be less fun if we went on a day trip every weekend.
3. I need to take better care of my appearance. I get regular hair cuts and get my nails done. But I dress like a slob I have decided. A casual top and dockers does not a fancy outfit make. I used to work in Boston in an office where wearing a suit was considered suitable. I stopped working in the city 7 1/2 years ago by choice and have gotten very casual. I actually went clothes shopping and bought some tops that push my boundaries of being a little dressier and even bought a dress(!). Today is the first day of new attire at work. We'll see how it goes. My husband does dress nicely every day in a button down shirt and sometimes even a tie so he is not a problem here.

That's it for now but I think its plenty.One step at a time. I have found being sick allows me to get more casual. Who spends time on their appearance when you feel like crap? Also, business offices where I have worked have gotten more and more casual over the years. Where I work now, jeans do appear on co-workers.

This is part of living a better life. I need to do other things but I'll get to them. Getting together more often with friends. Going out more socially than I have been doing. Step by step we can live a better life.

Good or bad, I'm not sure

I'm not sure if this is a good thing or a bad thing. There is a new program available called Smart Scheduling for doctor's offices. What it does is:

"Smart Scheduling mines patient scheduling histories to determine who is more likely to cancel or miss an appointment. It then sends alerts to the scheduling programs that doctor offices use to book appointments."

So it digs into your history and looks at your background to see if you are likely to show up for an appointment or not.

"If a patient is in a high-risk category, for instance, it prompts office schedulers to call with a reminder. If the patient cannot be reached, there is a good chance he will not show up at all. So, the doctors could then book another patient for that time slot, keeping the patient flow consistent throughout the day."

Younger patients, new patients, and those without phones are least likely to show up. Established patients, older patients, married patients, and for some reason 10am appointments are most likely to show up.

I'm not sure what happens if an expected no show, shows up. But I'm not sure if I like this kind of intrusion into my file. I mean it makes me want to be a no show a few times just to break the mold.

My thought is people should stick to appointments - it doesn't matter if its a doctor appointment, a business meeting, or meeting a friend for coffee - just show up. Or And call if you are running late. Its called politeness in case you have forgotten.

But I really don't want a computer looking into my background to decide if I am going to be a no-show.

I'm running out of doctor's appointments

I got my latest appointment list from the hospital. I was shocked to realize that I only have eight scheduled appointments. Total. That's amazing. I haven't had less than ten scheduled appointments (which is the most shown on the appointment list) in years.

On one level this makes me very happy. I am sick of being sick and going to the doctor. I spend way too much time there. I have been making a concerted effort to cut back on unnecessary doctor appointments. I have opted out of some doctors simply because I don't think they do me much good. I cancelled my appointment with my radiation oncologist because I have no idea why I am still seeing her.

On the other hand, with the constant doctor appointments comes a sense of a safety net - nothing that bad can be found at a doctor appointment if someone else has seen you just a couple of months before. This can be seen with cancer patients facing the end of active treatment when their oncologist says 'all done, see you in six months' and all the continual follow up ends. This is when the most cancer patients fall apart - their safety net has ended.

When I hit the end of active treatment, I got a therapist who I still see monthly and my health continued its downward spiral so I saw doctors constantly. Finally seven years after my diagnosis, six years after active treatment, my health is stabilizing (or so it seems today) and I stop seeing doctors as often.

Now I am down to a PCP annually, rheumatologist every three months, pain doctor every four months or so, endocrinologist annually, oncologist annually - maybe not any more after the next appointment, dermatologist annually, therapist monthly, and meds therapist twice a year I hope. That works out to 11 appointments a year plus 14 for my mental health. I can live with 25 total appointments. Plus dentist twice a year and periodontist twice a year. So 29 appointments. Plus a mammogram is 30 appointments. Which is really 12 medical, 14 mental and 4 dental. If I split it up, it sounds better. Or I need back injections. Damn I guess I don't have only a few appointments.

Unless of course something happens.

I will push that looming thought out of my brain because I need to 'grow up' (is that a good term?) and get past the 'being sick' stage of my life for now. I need a being healthy stage of my life for now so I can do the things I enjoy and not go to the damn doctor. That would make me much happier.

'Chasing Life' or Coping with a Cancer Diagnosis

I have been watching a new show on ABC Family called 'Chasing Life'. I was drawn to it for two reasons - its based in Boston and its about someone with cancer. I always like to check out the shows based locally - to see how good or bad a job they do. This one doesn't even attempt Boston accents which is good (because they never get them right) and is entire unrealistic in that a three generation family lives in a townhouse on Beacon Hill, which probably lists for a few million.

Here is the 'official' show description:

"Chasing Life follows twenty-something April (Italia Ricci), a smart and quick-witted aspiring journalist, who is trying to work her way up the ladder at a Boston newspaper by trying to impress her hard-nosed editor. When not pursuing the latest scoop, April tries to balance her ambitious career with her family – her widowed mom Sara, rebellious little sister Brenna and her grandmother. Just as things start to look up at work, home and on the romance front with co-worker Dominic, April gets the devastating news from an estranged uncle that she has cancer."

But I digress. What I do like about it is that the star, April, is coping with a diagnosis of leukemia. While yes there is the drama of a boyfriend, a BFF who is a drama queen, a bunch of family crap which can be entertaining, the issue of coping with a cancer diagnosis resounds with me.

I have watched the first two episodes and she has only told her BFF about her diagnosis and can't seem to find the right time to tell anyone else. She can't find the words, she can't find the time, she doesn't  know what to say. Her mother, sister, grandmother, co-workers, and boyfriend do not know.


While I fear the show is playing off what I feel is the latest trend that it is 'hip' to have cancer coming out of Hollywood - there seem to be more and more movies and shows about this - I can relate to this one. I dreamed about how she is dealing vs how I dealt with sharing my cancer news. As someone who went through the issues she is facing, I feel the show is realistic in its depiction of the issues. Usually if someone hasn't walked the walk with coping with cancer, they cannot talk the talk.

I plan to continue watching the show and am optimistic it will not deteriorate into fluff or stupidity. I am a few episodes behind which are safely stored on the Tivo until I get to them.

I'm not dead yet

"Bring out your dead"... my favorite Monty Python quote is actually "I'm not dead yet".

Yesterday was my annual physical. And the verdict was "I'm not dead yet". Yes I'm still here. And there doesn't seem to be much new that is significantly wrong with me. (The key word in that statement is 'new'.)

It was nice to talk to my PCP this year. Last year she was on maternity leave so I met with her NP who I also saw this past winter for a bad cold. And who I also saw over the winter and spring when taking my father to his PCP's NP (they share the same NP).

So other than going for cholesterol blood work after fasting sometime in the next month, the hope is that I am good for another 12 months.... But who is counting these days? I don't have another doctor appointment for a week.

I do not have an exciting life these days. I am going to the gym to maintain my 'healthy' body a little longer.

PS And I am still my lofty 5'3.5" tall. I stretched my neck a tiny bit.

You don't understand, don't worry, your doctor doesn't either

With all the new medical advice out there, they always end with two statements:

• More research is needed
• Ask your doctor if this is right for you.

Well in this case, more research was done and it turns out doctors aren't as smart (or Gods) as we might think. First of all how are doctors supposed to keep up on all the latest research. Second all the numbers come out in percentages - which are generalizations - and not round numbers.

This new article is long but very interesting (and definitely worth the read) about some new research showing how doctors do not necessarily understand the benefits of screening tests, as used as their examples. If 100 women get mammograms, how many will show something? Of the ones that do, how many will test positive for cancer? How many will be false positives? How many lives will be potentially saved?

"There are three other questions Gigerenzer advises patients to ask doctors to ensure they get all the facts:

• "What are the alternatives?"
• "What's the benefit and what's the harm?"
• "Please tell me this in terms of absolute numbers. If 100 take this medication and 100 people don't, what happens after five years?"

Once they get the answers it is up to them to make up their own mind about treatment, he says."

That should get you where you need to be to make a decision. If your doctor can't answer this or hesitates, maybe they should do some reading and get back to you or find a doctor who can answer the questions.

Age makes a huge difference

At both my cancer diagnosis, I was told 'you are definitely too young to have this type of cancer'. Gee thanks. Was that supposed to make me feel better? Because it didn't.

At my second diagnosis, I joined a support group for newly diagnosed patients which included a 28 year old. Then there was me and then everyone else was a decade or two older. I could relate to the 28 year old's concerns more than some of the older women. We still remain tight as a group but the youngest of us, now nearly 35, is thinking about starting a family, if at all still possible. She has a completely different goal than the rest of us.

I know a 22 year old going through treatment for liver cancer and she had surgical drains that were big and nasty for weeks and couldn't wear the fun clothes she wanted. She wants to have fun with her friends and stop going to the hospital. I can sympathize. Its summer and time to have fun, not wear baggy clothes to hide drains.

When I was 19 and dealing with thyroid cancer, I didn't want to stay home as my friends went out. I also didn't want to have to explain the scar across my neck to everyone - the scar that hadn't been there at the end of my freshman year but was newly done and bright red across my neck. Turtle necks in the summer time were not and never will be a fashion statement.

Don't call young people with cancer superficial if we thought of fashion first and then going out with our friends. We were just trying to be ourselves and deal with what is important in our lives. Dating is way more important to a 20 year old than it is to most 50 year olds. Scars and drains put a damper on going to the beach and baring almost all. The idea of getting naked with someone which showing all your surgical scars can make you think twice or three times.. That can put another damper on your dating life.

I have always been a fan of Stupidcancer.org (and wish it had been around decades before). I read this article yesterday about how it got started and the support groups for young adults which have been meeting in CT for the past six years. It illustrates the different needs between young and older adults with cancer. If you are under 40 and dealing with cancer, get to one of Stupid Cancer's events and meet people who can relate.

Fatigue, needing sleep, being tired

I drag my butt out of bed these days as opposed to jumping out of bed. It is harder and harder to get up in the morning. I have never been a fan of snooze alarms but my husband introduced them into my life when we got married. Apparently now I need a snooze alarm. As I slept through the first four alarms this morning.

There is a difference between fatigue, needing sleep and being tired. To me the differences are:

• Being tired means you need to rest to recover from exertion
• Fatigue means chronically being tired
• Needing sleep means needing sleep

I blame it on fibromyalgia predominantly. It causes fatigue. I get sleep and then I am too fatigued to get out of bed. I get tired also - after going for a walk or to the gym. Sometimes I am too tired to finish my workout. Sometimes I am too fatigued to cook dinner.

I plan my life carefully to avoid being too tired in mid-day and needing a nap.

Hmmm... I think I have another topic of discussion for my upcoming physical.

So what do those test results mean?

A new study shows (because we always need more studies) that women with breast cancer want the genomic tests but then do not understand the results.I am not surprised by this at all. This applies the results of the Oncotype DX, Mammaprint, and Mammostrat tests.

When I was first diagnosed with breast cancer the Oncotype DX test had just been made widely available. Many women who were also hanging out on the online websites for breast cancer support were getting their Oncotype DX test results (of course I was not eligible for the test) and questioning their results.

• Some women would say this is my result and this is what the doctor recommends, do you think I need a second opinion or something to that effect.
• Another group would say these are my results and they are in the middle, what should I do?
• Finally, there would be more women saying, these are my results, did anyone else have these results and what did they do?

It was clear there was a lot of lack of understanding of the test and what it meant. I think the first point is that doctors clearly need to better explain the tests and what their results mean. But we can't blame the doctors for all of this. Women, or any patient who is faced with a new diagnostic or predictive tool like this, need to understand that it is just one more tool in helping to come up with the best treatment plan for them.

Genomic tests are going to be part of the diagnostic and predictive tools available in the future. Education needs to be done for the general public to understand their potential impact and what they mean. To me they represent the next step in understanding the many subsets of different diseases.

Breast cancer is not one disease but hundreds. Every little test like this can help set up the correct treatment plan for each patient and prevent over and under treatment. Greater education needs to be given so that patients better understand that each patient is different and treatment plans are not going to be the same, even if you are treated at the same hospital by the same doctor.

Public utlities

Okay this is a bit off my usual topics but I have had my fill of dealing with public entities this weekend. Thursday night a little thunderstorm blew on through the area. It caused Boston's July 4th celebration to be cut short, even though it had been moved up a day. Anyone who was awake through it, said it was significant. Me, I slept through it in a room with a fan and an air conditioner running.

Then Friday morning, Arthur came to visit and we got 2.5 inches of rain from about 9am through the next morning. That was on top of what had already come down over night. (9am is when I found my little rain gauge and other garden decor in the basement and decided to run outside and put them out in the garden between the rain drops. I did get a little damp but I did dry off.

Then we started seeing all the damage. Never call NStar or Verizon on the 4th of July. NStar got me a cranky lady (who had probably received a few million calls already) who said the branch swinging on the lines across the street was not their problem. NStar's line is the top cable only. They don't want to hear about anything else. They didn't care that it isn't really a branch but the top 20' of a tree which are now 30' down the road hanging 15' up.

 

I then tried calling Verizon and the only person I got was a guy in Florida in billing. He didn't know who I should talk to but did think that a technician might be able to help me. 30 minutes later I was still on hold.

I then picked up my cell and called the town's DPW and spoke to the nice guy who said they had been out all day already cleaning up. He said they might have a little more pull with NStar.

Yesterday, my husband noticed that the support wire for the power cables that come to our house from pole is disconnected. I considering waiting until Monday so that I could speak to a nicer human being at NStar. I was informed by my better half that I should call today to get in their cue for repairs.

I called NStar again and got another crabby lady who informed me that she would send it to dispatch and they would decide if it was their responsibility or not.  I didn't bother to tell her that I had already checked their website and it clearly looks to me that it is their problem.

All we can do now is wait and see if it is miraculously repaired by NStar. We do not need to be home so it should just happen. I will wait until tomorrow and try calling the town and Verizon again. I hate dealing with public utlities

The latest theories

So the latest theory, in case you missed it, is that a daily aspirin will reduce breast cancer deaths. Sho-wah. I'm all in. But I can't take a daily aspirin because I am on prescription anti-inflammatories for my back. I wonder if that is a good substitute.

Actually I ignore all that now because a newer study based on 70,000 adoptees found that if a biological parent had cancer, the child had a 80-100% greater chance of developing one of the three most common cancers - breast, colorectal or prostate.

"The study was led by Bengt Zoller, a reader at Lund University in Sweden. Dr. Zoller says:

“The results of our study do not mean that an individual’s lifestyle is not important for the individual’s risk of developing cancer, but it suggests that the risk for the three most common types of cancer is dependent to a greater extent on genetics.”"

So lifestyle doesn't do squat. Not really squat. We know smoking and drinking and sodas and fried foods are bad for us in other ways but in terms of cancer risk, check your family tree.

In need of a few profound words

Last weekend, we participated in the New England Coalition for Cancer Survivorship's annual Take the Lake event. It is a family friendly fundraiser - 25 mile bike ride or 3 mile run/walk around a local lake. In my normal healthy manner, I convinced my husband to walk around the lake for the exercise while I took care of fundraising and selling raffle tickets at the event.

As an incentive to all the fundraisers, anyone raising more than $500 got a commemorative brick in Boston's Garden of Hope in conjunction with the Conquer Cancer Coalition. That seemed a little far off for me but we actually did raise an ample amount to get a brick. Now the question:

WHAT THE HELL DO WE WRITE ON THE DAMN BRICK?

It will leave a eternal lasting impression in Boston's City Hall Plaza and will be seen by many people over the ensuing centuries. Or maybe I am too optimistic and I should say decades. But still it will be brick and be here for a really long time.

We have 12 days to figure this out. I need inspiration. Four lines, 21 characters (including spaces) each.

All I have come up with so far is:

Remembering Those
Who Went Before Us

And then our names (which do not fit on one line)

What would you write? Its not about us. I know too many people who have died of cancer to list them all and to list only one or two would be skewed.

Heat, humidity, impending storms

I can just say I get cranky when I get hot and tired, especially due to the summer heat. Its been hot and nasty here. 90 or so with humidity for a couple of days - which in Boston counts as bad weather. I know there are parts of the country where this is considered nice summer weather but that is why I don't live there.

To top it off, a hurricane is coming to ruin our July 4th. This means that in addition to the heat and humidity, the air pressure is on its way down. That causes all sorts of things - women go into labor early, tempers start flying, and apparently I get really cranky.

Last night I was really cranky and yelled at my husband, something I never rarely do. I then went upstairs and pouted for a while, then apologized twice to my husband, and then I slept for about 12 hours.

Today I feel better. Then I made the mistake of going outside to look at teh garden and found out it is hot, sweaty and disgusting out already. I think I should hide inside until tomorrow when the high is due to be 77 and rain. I can live with that.

Cancer and long term planning

With a cancer diagnosis, one starts having many little conversations with oneself and reevaluates many things that had previously been taken for granted in life. Some of those are very profound,  'its time to take charge of my life', for example, and others are less so 'its time to go to Europe that I've always talked about'.

But one of those items in life that seems to get reevaluated is 'if I have cancer, how important is retirement saving and planning?'. 'How am I supposed to save for retirement and pay medical bills?' And you cut back on your working hours so you can get to appointments. Money is tight.

But the real question is 'with cancer, will I even be here for retirement?'. Clearly retirement planning takes a hit. The younger you are, the less real it can seem.

Yesterday my husband came home from work (where its all top secret so he can't tell me much) in a cranky mood because he felt it was another long and boring day. (My point to him is they pay you to be there. But I digress) Anyway, one of  us mentioned how many more years of this would there be to put up with as we are getting up there in age.

The thought then occurred to me, we never figured out what the hell we are doing when we retire. To be fair, we got married nine years ago and two years later I was diagnosed with breast cancer and all thoughts of retiring were put aside. So now we have no plan. This isn't to say we aren't saving for retirement, we are. But we never figured out our plan.

What are our goals before we retire? Pay off the house first. Then what? Where do we want to retire? Close to good medical care for me of course. But do we want to keep the house, buy a second retirement place someplace? What do we want to do when we retire? We need hobbies and plans. Sitting around together will quickly lead to a body or a divorce.

We realize we need to start planning and thinking and agreeing on some things. It shouldn't be hard but we need to start.

Maybe now I am in a mental place where retirement seems realer again. I am getting closer to the age. My health certainly isn't going to let me keep working for another 20 years. Another cancer blip might change everything all over again but while we can, I think we need to do some long term planning for ourselves and look forward to some happy, healthy years together.

And the costs just keep piling up

Back at my first cancer adventure in 1981, my father advised me never to let my Blue Cross health insurance lapse because going forward with a pre-existing condition, I could always lose my health insurance. And that was something I could not afford. For quite a few years, until MA changed the law regarding pre-existing conditions, I would often pay for my own private health insurance to ensure I never lost Blue Cross. Even if my employer was offering another plan, I would pay for my own. That wasn't cheap.

Then I had more medical adventures and got to know the surgery department and ER a few more times. I kept my Blue Cross insurance and kept on paying. From time to time I would have a job which offered Blue Cross insurance. Then the law changed and I could stop that.

In the past 7 years since my second cancer adventure, I average a minimum of 50 doctor appointments each year. We max out our out of pocket coverage each year as well. One year a friend convinced to try to keep track of what insurance paid vs what I paid. No contest. I paid a tiny portion of the hundreds of thousands paid by the insurer.

So I am verification of a new study showing that after cancer, patients face rising costs of health care. All of a sudden you get more doctors and more appointments and everything needs to be checked because of your medical history, blah, blah, blah. And there are all the health issues caused by side effects of treatment that may never go away. The lost productivity costs because you have to go to the (damn) doctor or don't feel well enough to work that day. The list goes on.

But now it looks like a cancer diagnosis is financially as well as emotionally and physically taxing.