I really need more math

I had a doctor's appointment yesterday that resulted in the need for more math. I am currently weaning off one back pain medication.This is a six week process. I used to take one pill twice a day but to wean off it:

• I have two weeks of one pill once a day
• then two weeks of half a pill once a day
• then two weeks of half a pill every other day.

(I am a little confused where I am in this but I think I am switching from half a pill every day to half a pill every other day.)

This is in addition to my thyroid pills where I take a whole pill every day but Mondays and Fridays when I take half a pill.

So my doctor yesterday said in two weeks when I am done with the half a pill every other day of the one I am weaning off, I should add a new medication and start weaning off another medication where for a week I take one pill a day instead of two.

I am confused. I need to take notes. I put reminders into my phone. I use two daily pill boxes to keep track. I spend time every Saturday afternoon filling my pill boxes.

Maybe I don't need math. Maybe I need a brain.

Breast cancer is even more complicated than previously thought

And this is supposed to be good news? Personally I always look for the easy way out as my inherent laziness takes over. But this is supposed to be progress.

There was a study in  England (because we needed yet another study)of the protein coding in 100 breast cancer tumors. The result showed how complex breast cancer really is.

The authors wrote in the online edition of Nature “A sobering perspective on the complexity and diversity of the disease is emerging,” ... which is publishing a series of studies of the genetic changes in breast cancer.

The scientists ... found 73 different combinations of disease-causing mutations in the tumors, each involving up to six different genes from a set of 40 “driver genes.” 

Seven of the 40 individual driver genes were mutated in more than 10% of cases, but 33 others that were less common also contributed to the development of the cancers, the team reported.  In 28 cases, a single mutation was enough to cause disease. 

The researchers identified nine new genes that caused the cancers, and also found mutations in genes that were already known to cause breast and other cancers.

Discovering that a single disease — breast cancer — can appear in so many different guises means that developing targeted therapies tailored to a patient’s tumor type will remain a tall order in the near future.

After I read this about six times, it dawned on my tiny chemo brain that:

- they discovered nine new genes that cause breast cancer
- there are driver genes which are the real 'bad guys'

And this is progress? Well I guess if they find the genes that's a good start but its sort of like getting through a locked door and finding nine more locked doors behind them which you need to get through. The good news is you go through the first door. The bad news is there are nine more. And you have no idea what's behind them.

The people who don't social media

To continue yesterday's post, I have noticed in the previous years I have some friends and family members who are on social media and some who aren't. And I feel a distance growing between with the ones who don't.

Basically if someone isn't on social media with me - twitter, FB, Linkedin, Pinterest, etc - they will probably not have any idea of what I am up to and what are my latest ailments.

The friends I see and actually go to lunch with or out for coffee with one on one have a good understanding of how I am doing because it is a chance to discuss things face to face. But still not as good as the social media thing.If I only get together with people as part of a group, they probably don't understand either because I am not going to take center stage to discuss my health when there are more interesting things to talk about.

While I like talking on the phone, the last thing I want to do is repeatedly run down the current status of all my ailments. I don't. If you ask a specific question - one of the most common ones I get is 'is your back any better yet?'. The answer to that question is 'no it is not and will not be better so shut up and stop asking'. I created a blog which is the center of all my social media to handle all the ailment questions.

So, if you aren't on social media with me, you are out of the loop. And if you aren't on social media, you probably aren't reading my blog and will never get this message. Sorry, I don't feel inclined to repeat my medical ailment status over and over again. And they are my ailments affecting my body so I am allowed to handle them the way I want to. My health is about me, my health is not about you. So if you want to know how I am doing, you might need to make an effort from time to time.

Yes those of you who  aren't on social media, you might need to make more of an effort to keep up with your friends who are. Social media is becoming interwoven into the way we communicate on many levels. The news broadcasts reference online material, events ask you to tweet about them, stores have a Facebook page and a Pinterest page for their wares. Special deals are available through social media. So if you aren't there, you don't know what is going on with me and many other things. In other words, you are being left behind.

Social media for patients

In this day and age of vanishing privacy with the spread of social media, one of the biggest groups this has had an impact on is patients - those with an ailment or hundred. When the internet first came along, one of the first groups to jump online were farmers and ranchers - they could check corn futures from the isolation of their snow bound abodes. As long as they had a phone line and a dial up (remember those) modem, they could improve their own financial security.

Now us patients can bare our innermost secrets to total strangers and get support world wide from people we will probably never meet. The internet has provided us access to millions of terabytes of medical information and the latest research. Social media has allowed us to strengthen bonds with strangers and learn to advocate for those who we meet online. I get support that gets me through the medical (mis)adventures and roller coaster twists and turns. We form little democracies with virtual mayors and leaders with our avatars displaying who we are and what we care about.

As a professional patient for the last five years I think this is the one thing that has had the biggest impact on my mental well being. Instead of being isolated by my ailments, I am supported through this online. When I had my hysterectomy in 2005, someone suggested Hystersisters as a place to find information and support. Up until that time I had primarily used the internet for work, job hunting, games, sending emails, etc. But an online community? I had no idea they existed and provided so much information.

Then with cancer, I found other communities - Crazy Sexy Life and the Komen message boards, quickly followed by a million more cancer message boards, Wego Health, Facebook, Twitter, and  my latest is Pinterest. What I find humorous is that I have only been on Facebook for four years. I was already on Twitter, and several cancer message boards before then.

But social media is now something I would find difficult to live without. How else would I be able to find support when I need it?

Crankiness, crabbiness, and general witchiness

I have been in a bad mood for the last few days. I know there have been some medication change which could cause some fo this.I have also been under a lot of stress due to paid work and volunteer work. Why is it all volunteer works happens at the same time as important work deadlines? Add in some interactions with a cranky spouse and a few  rude, chronically late people, disastrous restaurant meals, and there you have the foundation for crankiness, crabbiness, and general witchiness. And maybe some upcoming medical misadventures to ponder.

My doctor appointments seem to have slowed down to one every two weeks or so. Next week I have two. This week I had a dentist appointment. Maybe 3 each month. This has reduced some stress levels so maybe my stress has moved on to other areas of my life giving me less patience with rude, chronically late people. Maybe my husband's crankiness is just a reaction to my crankiness.

We are all entitled to our bad moods, as long as you have good moods too. Maybe my good mood will return when my stress level goes down and I get through all my deadlines next Friday.

Walking in our shoes

I often wonder (whine) about why people don't 'get it'. These are the people who tell us what we should do and how we should feel in terms of our medical issues. They mean well but don't get it. I have seen people make a quick U turn when they get a similar icky medical diagnosis. All of a sudden they realize all us cancer people aren't lying, wimpy, or lazy. We really hurt, are scared, confused, stressed,  and feel like crap.

There is some adage about 'walking in their shoes' and it is very true. Until you try it, you don't get it.

In addition to individuals, I think every company which makes any pharmaceutical drug, medical device, or provides any services, should have on their staff or as a consultant, someone who is taking their medication, has the ailment it is designed to treat, or uses their services. They need to take a step back and look at it from the perspective of the people they serve.

The hospital I go to has very conveniently designed the two departments that provide the most services to cancer patients, in the  farther corners of the hospital. They are a good ten minute walk if you are healthy. A lot longer if you aren't. Your architects need to talk to the patients here. Their architects must believe in the benefits of a daily walk.

I listen and read carefully all the information provided to patients. So much of it is crap. Crap would cover the 'I have a cure for your cancer and if you send me $5000 USD, I'll send it it you' as well as the scripted interviews and ads from manufacturers or other providers. Some of this I know is legal department sanitized, marketing spin that aligns with the corporate image that was developed through a long drawn out process involving multiple ad and PR agency meetings billing huge fees. None of this helps us. If they skipped the big buck consultants and looked at it from the patient side, maybe they might start to get it.

There are lots of us out there. There are lots of ways to find us if they go out of their little shell of corporate America. Maybe stop spending all that money on fancy packaging and employee perks and start spending a little of it on trying to walk in the shoes of the people you are trying to treat.

I did not get the math class

I did not get the thyroid cancer math class. I am sorry. I can't remember it all. I get confused. I fake it and pretend I understand. But I don't.

I am blaming a combination of chemo brain and the fact that when I had thyroid cancer the world was different my doctors just gave me a Synthroid (synthetic thyroid hormone) dose and never explained numbers. Every so often they would look at my blood test results and say 'hmmm, let's adjust your dose'. Part of that was because that back then Synthroid was not available in a million different dose levels. I think it was just 100 mcg or 200 mcg. Now its available in doses of everything from 37.5, 50, 75, 87, 100, 125, 150, 175, 200 mcg and many more.

At my last appointment with my endocrinologist, my TSH level was a little too low. It was .22 and should be at the low end of the normal range of .35 to 4.5. So instead of taking 1/2 a pill once a week my dose was reduced by another 1/2 pill a week and as a result my TSH level went up to .53 which is in the acceptable range. When they decrease your dose, your levels go up - just to make it confusing.

My doctor pulled out a calculator to figure out what the dose should be. Should I go down to 125 mcg with a half pill once a week or go with 137 mcg and take a half pill twice a week? This way I am getting an average of 117.4 mcg each day. If I went to 125 mcg and took 1/2 a pill once a week I would be at 116.1 mcg which she thought was too low. She asked me if I used a daily pill box before deciding what the dose should be.

Then there are T3 and T4 levels that need to be monitored and kept to barely detectable levels so I don't remember those numbers either. These are monitored because if they are detectable it could be a sign of recurrence (I think).

If you go to the thyroid cancer message boards there are all these people asking about changing TSH, T3, and T4 levels and another test that I cant remember. They ask about why they go up and down, should they change their drug levels or change their doctors or change something else. What happens when you gain or lose weight or get pregnant or go vegetarian or all sorts of things. And its all about the numbers. I never comment on those discussions. I read them and think 'some day this will all make sense'.

But it appears it will never make any more sense than professional football rules to me. I have both explained to me a million times and I still don't get it. Back when I was in my 20's. I would get together with a friend for drinks often on Monday nights. We would sit at the bar and the bartender and some nice men would always explain foot ball too us. We lied and pretended we understood but never really did.

I think I am okay with this. I get my blood tests. My doctors explain them to me. Its one less thing to worry about.

Letting my insecurities rule in blogland

I started my blog and using the wonderful templates, I tried to customize it. I changed it around a few times. But now I have my own little pink, blue, and purple pages. It is not pink due to pinkificiation. It is pink because I like pink. But I digress.

Then I started looking at other people's blogs. Theirs are so much better than mine. They put in pictures. I rarely put in pictures because that means I have to remember to  upload the pictures from my camera to my computer. I just uploaded more than six months of pictures so there is hope for the coming weeks. I usually stick with comics that I like.

They get lots of comments and have hundreds of followers. I have 65 followers (and I am proud of all of them) but some people have 300-400. Why not me?

They have nicely designed blogs with images, and funky text, and all sorts of things. My blog is pretty boring in its pinkness. Would you know from looking at my blog that I work on lots of websites and people pay me to do so? Why isn't my blog prettier with more followers and more comments? I'm not good enough.

I am not providing any links to these blogs which are better than mine. They are all better than mine (except for the ones that have a single entry from four years ago that says 'I just started my new blog and I'll be sure to update it every day.') My blog is just not that great. Just like I could not write the great American Novel (and if you asked my high school English teacher, I couldn't even write a decent essay), I will never be able to write the great American Blog.

It turns out I am not just insecure about this. I have a new ailment called blog envy. Isn't that one of the deadly sins? Envy Grr. I usually do not compare myself much to others. I don't really care if my clothes are the latest style - they have to be clean and comfortable, or my hair is perfect - I do wash and brush it daily but often not much more, and my house clearly is not the cleanest - the maid has had the last decade off. I am what I am and I call it like I see it. But I do have blog envy.

You read those other perfect, fancy blogs, with lots of comments and followers. People manage huge families, large businesses, save the homeless, recycle everything, and are completely perfect. Or so they claim. Can they be?

Over at Shabby Blog, there is a post on how to blog and not have blog envy. Yes its a pretty blog and I am linking to it so you can see her followers and comments (84 and counting on this single post). Her list on blogging is:

1. Be original
2. Respect other's originality
3. Blog blindly
4. Be kind
5. Blogging isn't everything

Wait that can't be right! Blogging isn't everything? Well then maybe I'll be insecure about something else. Do these pants make me look fat?

Stepping away from Dr Google

It is time to step away from Dr Google. Dr Google can diagnose me with life threatening ailments all too easily. I do not believe Dr Google went to medical school, nor does s/he have a good bedside manner. Dr Google tells it like it is with no sugar coating. Dr Google says things like 'the prognosis for patients with (fill in the blank) is generally poor with low quality of life expected' and 'there is no known cure for (fill in the blank), treatment usually focuses on management of symptoms'. Dr Google sucks.

How well do I know Dr Google? Too well. I get a minor ailment - cold fingers which turn white. This is Raynaud's syndrome. Nothing that can be done about it except possibly taking blood pressure medication. Generally a benign lifetime ailment which strikes people in their 20's and 30's. So I'm a little unique that I got it later in life (but I am only 37 right now - I decided that is a good age - I was 29 for a long time). But if you ask Dr Google it can be related to Sjogrens, lupus and rheumatoid arthritis. My mind then tells me Dr Google has just diagnosed me with one or all of the above.

Then there was a little sore in my mouth which turned out to be a nothing - just a weird piece of scar tissue. Dr Google (with a little help from the dentist with no bedside manner) had me convinced it was cancer.

Then I start adding up symptoms and I have many more ailments. This one plus that one plus that one plus that one tell me that the combination means something new that I will stuck with. I can take any symptom checker on the planet and end up terminally ill in less than ten minutes.

So why do I spend so much time with Dr Google? Dr Google is far easier to reach than any other doctor. Dr Google lives on my laptop and smart phone. Dr Google is accessible 24/7. Dr Google doesn't have a secretary screening calls or putting email into spam folders.

I need to step away from Dr Google and wait for my annual physical in June. I refuse to go to my PCP any sooner unless I am dripping blood. I have no new life threatening ailments. I will be fine, unless Dr Google tells me otherwise.

Infections cause cancer

Who knew infections cause cancer. I think of them as completely different things. You get an infection as a result of a cut that doesn't heal or strep throat or something like that. Treat it with antibiotics and it usually goes away - unless its MRSA or something nasty. Then I think of cancer as rogue cells which go rampant and take over portions of your body unless cut out or killed off with chemotherapy. I'm not a medical person so I don't claim any education in this area but they don't seem related.

Now they (the proverbial 'them') say that one in six cancers are caused by an infection. HPV, Hepatitis B&C, and a stomach bacteria have been shown to cause cancer - primarily cervical, stomach, liver and other gastric cancers. In developed countries only 7.4% of cancers are caused by infections but 22.9% in less developed countries. That shows the power of vaccines. Younger people are more likely to get the infection related cancers.

So this is food for thought. I have also heard that they are now considering cancer to be a virus, which doesn't necessarily align with the infection idea but is another avenue to pursue. So what if more cancers are also caused by infections? Or by viruses? Cancer is not one disease but hundreds of diseases. Mankind has just lumped them together and called them cancers perhaps out of ignorance. Are we now getting closer to the truth? Perhaps this might lead to the cure.

Managing your diagnosis

I was talking with a friend last week. She was diagnosed with breast cancer about the same time I was and was scheduled for the same sort of treatment. But she was allergic to chemo and never completed more than her first dose but she did have radiation.

A month or so ago she was throwing up blood and all sorts of nasty other issues. After several trips to the ER and numerous medical (mis)adventures, it turns out she has an ulcer which was irritating her her yet undiscovered stomach cancer causing it to bleed. She then had a bone scan and found all kinds of shadows and was then going to have some more medical (mis)adventures to find out what spread where - how fun. Now she is in that wonderful land of 'holy crap-more-cancer-what-do-we-do-I-need-staging-and-a-treatment-protocol'.

Next week the rest of us who were in the same 'introduction to breast cancer support group' are getting together to find out what's going on before she leaves for her two week vacation in Bermuda (and we are all jealous about that part). When she returns from vacation she gets to start whatever chemo and other fun stuff that is lined up.

She is facing a not very fun diagnosis with a smile. But we were talking about what she wants to know from her doctors and when. She has told her doctors she doesn't want to be told anything unless her daughter is there. We also talked about how this is the time to take charge and tell the doctors what to tell her and what not to.She gets to be the one to tell her doctors what they can tell her and when.

We were educated by our first diagnoses and now we can tell our doctors how we are co-managing our treatment instead of the doctor getting to take the single lead. It is unfortunate that we get to this state but once we enter that oncology department the second time, we are going to be in charge.

I need an inspiring blog post

I haven't been very inspiring recently, not that I think I am that inspiring ever. Sometimes I wonder why anyone reads my blog at all but that is another story.

Its been almost five years since my breast cancer diagnosis. Am I supposed to have a party or something? I don't think so. I'm not doing much celebrating. I'm just not in the mood. I mean what is the significance of five years? Am I all better then? I was told breast cancer would take a year out of my life and then I would reach a new normal and life would go on. Well, it didn't really get to any new normal so my expectations for a life changing event at five years are some where in the basement.

Cancer swallows up your life and you learn to deal with it and continue to cope. But it never really goes away. So I keep blogging about my little medical misadventures. I am told people read my blog and like it (for whatever reason). Sometimes I hear that its nice to see someone who has lived for so long with cancer.

But then sometimes I hesitate to write about somethings. If I have been living with thyroid cancer for over 30 years but then all of a sudden need more tests, will I cause concern among others? Am I proof that cancer will doom us all?

No there is nothing new and significantly wrong with me that I know of. I survived my annual mammogram with no bad news or additional images required. But I didn't feel any big sigh of relief. More tests this summer. But that's nothing new. I always have more tests coming up. If its not one thing its another. I just have no inspiration to write about anything.

All those drugs

When you are diagnosed with cancer, they start handing out prescriptions like they are candy bars. Take this to prevent infection, take this one for pain for the next five days, take this one for stress, and they they keep adding more and more. Precancer, you can live the life of Riley. Post cancer, you have to adopt the weekly pill box that you religiously fill each Saturday and when you travel your tooth brush and passport are no longer the most important things to bring.

Currently I take five medications daily - including the one I am weaning off that has been replaced by a pain patch (which works much better). These include post thyroid cancer replacement meds, post breast cancer hormonal meds, anti inflammatories for my back, pain pills for my back, and an anti depressant to help me cope with the lovely state of my health. Then I have two 'just-in-case' prescriptions plus a different pain patch. In addition I have a little stash of a varying number of bottles and pills that I tried or took for a while and no longer use.

Of these, I know at least three of them have what I call 'street value' meaning I could find  someone to sell them for me on the side if I was inclined to break the law and contribute to the drug problem in this country. Instead at least once a year I take my unneeded medications to the drug collections at community events for proper disposal. I will not flush medication down the toilet because that causes other problems with drugs in the water supply.

I will not give them to anyone else. I know people who routinely share their medications with friends and relatives. This is illegal to start. There was a time as a teenager when I was in a remote portion of Maine and developed an abscessed wisdom tooth and was a four hour bus ride, followed by another three hour drive from home where my mother gave me a couple of her pain pills. But that clearly was an exception to the rule.

I have one friend who talks about getting medications from her sister and her sister in law from prescriptions they get and either don't use often or don't have a problem getting them refilled. I think they see it as 'well she wasn't using it so she gave it to me'. Probably these drugs are not going to fall into the wrong hands and leave this little circle but it is still illegal and I haven't quite figured out why they do it. Another time I was on a retreat with a bunch of women and one of them started asking everyone for an ativan so she could sleep. Um, I did not speak up but someone did give her one, to my dismay.

My policy is my doctors gave me my drugs and they are not for anyone else's use. Sorry. If there were undue circumstances where I had pain pills and there were injured people far from medical care, I might share, but they would have to be dire circumstances.

Health insurance companies are getting more and more on the bandwagon to help prevent the availability of prescription drugs on the street. Blue Cross of MA has just announced a program where prescriptions will be filled for certain pain pills for 15 days and refilled for another 15 days without prompting a review. Unless they are for cancer patients or others with terminal illnesses.

They hope not to bury the medical profession in more paperwork but they also realize there are too many patients who refill unneeded pain medications and they end up on the street.  There is a real problem with pain killer abuse in this country. I have two goals here: not to contribute to that problem and to make sure I don't end up with any unwanted dependencies either. I try to eliminate as many prescriptions in my life as possible. Popping a pill isn't an answer.My doctors have offered others for various ailments and I decline.

I would be happiest if I could be so healthy that I had no prescriptions.

Hospital parking

Yesterday I went to another hospital - not as a patient. I was there to staff a table at a community wellness day. It was full of all sorts of free screenings - PSA, skin, thyroid, cholesterol, diabetes, blood pressure, cardiac monitoring, balance testing (I passed that one) and many more. It was a nice event and I thought it was productive - meaning it created more follow up work for me. (Even though they had a continuous loop going from a camera from a colonoscopy - thank GOD I was not right across from that!)

One of the big patient peeves where I am treated are the parking fees for the garage. They are $2 for the first hour, $5 for up to 3 hours, and then $8 for 3-24 hours. The goal is always get in and out in less than an hour. Everyone complains about the parking fees because it used to be free before there was a garage and only a giant lot where you had to walk for miles to get back to the main entrance.

But at this other hospital, where half their parking is in a lot along side of the highway out in the suburbs (read 'giant snow filled parking lot in the winter where you have to figure out which bump is your car and then dig it out before driving home'), has higher parking fees. The list started at 0–½ hour - free, ½–1 hour: $4, 1–2 hours: $6, 2–3 hours: $7, and 3–24 hours: $8

Your basic doctor appointment is going to last an hour-ish by the time that you get in and out and sit around the waiting room, so unless you are lucky enough to get in and out in 30 minutes (doubtful), you are probably going to pay $6 for the privilege of parking. If you want to go to a fancy hospital in Boston, parking is more. $8 for the first hour - ow! 

I for one don't mind the parking fees. Its expected these days to have to pay to park anywhere close to where you want to be. I still live in a town without parking meters up and down the main road but I am sure this will change. We have stupid parking lots with those little machines we love to hate - put in quarters only for a little slip of paper you need to walk back to your car to put on the dash board. Half the time they are broken so you have to leave a little not for the parking ticket man so he doesn't leave you a ticket.

Really I am just not a huge fan of hospital parking. I spend entirely too much time in the parking garage at the hospital anyway. I am down to only  a couple of appointments each month right now but still its too many.

New treatment standards

I am always torn when new treatment standards are announced which promise the same or better results with fewer side effects. My first thought is always "why didn't they have that when I was treated". I actually find it worse when they decide that the previous standard of treatment didn't really work, but that's another story.

In thyroid cancer treatment, the first step is a thyroidectomy. Because of where your thyroid is, it is virtually impossible to remove it all - its kind of squished in between some essential body parts - spinal cord, esophagus, wind pipe, arteries, vocal cords - that are pretty darn important. So after removing as much of your thyroid as they can, they treat patients with radioactive iodine to dissolve the rest of your thyroid. Thyroids absorb iodine - which is why we have iodized salt. Now that sums of my medical knowledge on the subject of thyroids. I haven't had one for so long I haven't really spent much time learning about it.

The problem with radioactive iodine is that it is radioactive. And patients treated with it tend to be radioactive as a result. And while they are 'glowing' going out in public isn't a good idea, nor is exposure to small children, pregnant women, etc. So often, after treatment, patients are stuck in isolation for a few days - which just sucks. Pretend you are the boy in the plastic bubble for a few days and you'll get the point.

Also before the radioactive iodine treatment, patients would have to go off their synthetic thyroid hormone for two to four weeks and live on a low iodine diet - no shrimp, no salt, and nothing made with either to start with and then a few (thousand) more restrictions on top of that. And since you are off your meds for so long, you feel like hibernating.

Now they want to change all that. They have found that they can reduce the radioactive iodine dose to 1/3 of its current dose, orally as an outpatient. And they do not have to reduce their synthetic thyroid dose either. So for the patient, its easier, quicker, and less disruptive. (For the health insurers, it costs a lot less so even they are happy.)

The only burning question is - when will it appear at a hospital near us patients?