Here is an inspiration

He's blind.
He's had thyroid cancer.
He's traveling to 30 MLB ball parks in 30 days.
He's raising $900,000 for Thyca - Thyroid Cancer Survivor's Association.

We should all be inspired by Reggie and his story. If we were all so motivated the world would be a better place.

Seriously a bit of altruism would help us all.

Would you share?

Two things happened yesterday (well lots more than two things happened in my life but these two made me think) and I started thinking. How much and when do you tell your cancer story? This isn't as easy as you might think. Once you tell the world you can't 'untell' it. And people still have a tendency to put you in that special category of 'on their way out' once they hear that c-word. Would a hiring manager, ignore the C-factor when reviewing your resume? Would people start treating you differently? Would it bring the crazies out of the woodwork? Would friends start rejecting you? These are very real questions.

First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.

Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)

When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But  nothing was ever circulated through the office about me. I don't think I would want it.

Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.

Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:

Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.

In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'.  I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.

We are few and far between

You can't turn around without running in to women who have had breast cancer. They wear pink, they have ribbons, they have walks, and cities and towns are painted pink. They can bond. They have retreats and get togethers. The month of October no longer leads up to Halloween, it has been pinkified. They get a whole month. If I don't know dozens of women who have had breast cancer, I know hundreds. There are lots of us.

But then there are few and far between long term thyroid cancer people. If there were 10,000 cases a year in the 1970's and early 1980s, how many are there left from them? A few weeks ago, I posted on a thyroid cancer message board asking to connect with others who had lived with it a long time. People who were five and six years out from treatment replied. Is cancer supposed to impair your definition of 'long term'? Definitely it shouldn't. Five and six years is not a long time. Long time is decades. Five years is the stupid little criteria they use in clinical trials to measure outcomes.

Back on the message board, I clarified a few days later and said I was looking to connect with people who were decades out from treatment. One person replied at 15 years out, another pushing 20. Finally a woman from the farthest part of the country from me replied over the weekend and said she is nearly 40 years out asking to connect. I have already sent her a message.

If you have a 'popular' disease like breast cancer with its walks, awareness, fundraisers, blah, blah, blah, it may be very difficult to realize the difference with someone who has a 'rare' disease. Has anyone ever been to a thyroid cancer fundraiser, walk or other awareness event? Probably not. They are just not as common because the disease just isn't as common.

There are other long term cancer people out there. I know others who are 25-30 or more years out from other types of cancer but they had the more popular kinds of cancer. We are the people who had cancer when it was the big C. We proved the big C wrong, by living through it. We may be few and far between but we are still here.

Call me irresponsible

Yes I am irresponsible. First of all I  did not blog for several days and didn't tell anyone. Well, posting on my blog and saying 'I am going away and won't be blogging' is inviting the burglars in. I apologize and now I am back. My cat is overjoyed we came back even though he had a very nice cat sitter who came and fed him, brushed him, and sat with him twice a day. But he feels he was neglected and malnutreated for the duration.

I am also irresponsible because I failed to pack my medications correctly. I packed my husband's pills. I packed my vitamins. I packed one pill box with prescriptions. I did not pack my daily prescriptions in my other pill box. Saturday night I remembered to take Saturday mornings pills. Then I found I was missing my Sunday and Monday AM pills. Well I took my Monday AM pills when we got home this afternoon. And I still seem to be alive, so no harm, no foul.

I am also irresponsible in that we went on a small hike on Sunday and at the very farthest point from the car, I stepped funny and 'felt' my ankle do the similar bad thing it did about three years ago that resulted in a boot and lots of PT. Right now I am in the ice, elevation and avoidance category. I'll give it a few days before I decide if it needs additional attention.

Finally I am very irresponsible in that we came home and started to  unpack and I couldn't find my wallet. I wasn't in my bag. I wasn't mixed up in the dirty laundry. It wasn't anywhere in the car, under the seats, etc. Finally after a good deal of stress, I found it sitting on the  bed next to my purse.

But I recovered from all this now by taking my pills, fed the cat, resting my ankle, destressing, and no longer being covered in wood smoke/insect repellant perfume.

You can call me irresponsible but I may not answer.

A 6.5 day pain patch

I have a bad back (in case I haven't mentioned it before) that gives me lots of pain. I have tried different medications for it, have special workouts that are supposed to help, take anti-inflammatories, have had several medical (mis)adventures to help relief pain, and am a firm believer in the value of multiple ice packs (especially in the summer). I also have breakthrough pain meds for when either I do stomething stupid or try to pretend I am a normal human being. Either my back pain is increasing or pain meds stop working and they get switched around and swapped out for others.

My latest pain relief are these wonderful (supposedly) 7 day pain patches. I put a new one on every Friday morning. The first few weeks they were great but now I am discovering a pattern. They only last 6.5 days. They come in little boxes of four for each month. If I switch to every 6.5 days I will run short each month and of course my insurance company would never let me detour from the designated dosing. (This was made very clear in the fancy DVD that accompanied my initial package.)

Last night my back hurt a lot and my husband accused me of being cranky. I told him my back was not cooperating and my pain patch wasn't working. He was deeply concerned that it would be several days (of crankiness) before I could put on another patch. I assured him I would put on another one after my shower this morning. He has already asked if I have put on the new one. Do I look like I have showered yet? No, my hair is still messy and I am still watching the mismatching pajamas I put on last night. And I might still be cranky.

I am optimistic about these patches. I may still be adjusting to them. I am also on the lowest dose available and go back to my doctor in another month or so to see how I am doing. In the meantime, I will just call them my 6.5 day pain patch.

Angiogenesis

I only learned about angiogenesis last year. Not having recently gone to medical school, I turned to my friend, Mr. Google (as opposed to Dr. Google) for a definition. Wikipedia says:

"Angiogenesis is the physiological process involving the growth of new blood vessels from pre-existing vessels."

 It goes on to add:

"Angiogenesis may be a target for combating diseases characterized by either poor vascularisation or abnormal vasculature."

Now we have gotten through a LOT of big words this morning.I have found an article explaining how contrast MRI may predict how women would respond to chemotherapy and possibly allow them to avoid mastectomies. Another (as if we needed it) research study was done and found:

"... contrast-enhanced MRIs can work as an early predictor of the body’s response to neoadjuvant chemotherapy by measuring the blood vessel formation in tumors, a process known as angiogenesis.  Angiogenesis is considered an earlier and more accurate marker of tumor response."

"... MRIs can detect tumor changes as early as the first cycle of chemotherapy.  If the tumor appears smaller and less bright on the scan, it can be interpreted as a sign that the chemotherapy may be effective and eventually lead to tumor eradication."
However this is all new and exciting but the results will be published later this year and then we need to see if this is coming soon to a hospital near you (and me). So one big word I learned last year combined with a technology I have already experienced has created progress. We may have to wait but in this case progress is progress.

News that is useless to me

I didn't use to be (so) fat. I used to be a size 8ish and am now a size 12ish if you really need to know. My size 8ness lasted until that first chemo when they pumped me full of steroids....

Now research says lose a little weight and greatly reduce that breast cancer risk. That's not very helpful. I am in the much higher than normal risk pool because I already had it.

More research (because we needed more research) tells us that obese people are more likely to be diagnosed with advanced and aggressive thyroid cancer. This is also a little too late for me because I don't have a thyroid (thank you cancer) but it could always come back - but we just won't think about THOSE things.

So this is useless news to me but maybe it will help others. Not that you haven't heard it before - we all need to lose weight.

Rehab for cancer patients

I want some rehab. Why didn't someone think about it sooner? Its clearly needed. Oncology Rehab Partners based in MA has a program where it works with hospitals to provide a certification program for providing post cancer treatment rehab.

"Oncology Rehab Partners is an innovative healthcare company breaking new ground in the field of cancer care. Oncology Rehab Partners is the industry’s first organization to provide hospitals and cancer centers with the tools needed to develop and deliver quality, reimbursable cancer rehabilitation services to the millions of cancer survivors who suffer from debilitating side-effects caused by treatments.

Oncology Rehab Partners’ STAR Program® Certification (Survivorship Training and Rehab) provides facilities and individual clinicians with tools and systematic, proven programs to deliver excellent oncology rehabilitation care."

A Boston Globe article reported on them the other day: 'BREAST CANCER SURVIVORS might suffer from weakness, scar adhesions, cognitive problems, balance problems - the list goes on. But unlike stroke or heart attack victims, they are typically tossed out to sink or swim after chemotherapy or radiation.'

I am not very fond of the sink or swim approach to post cancer treatment. I wonder if it is too late for me. There are some certified practitioners near by.

Seriously why didn't anyone think of this before? Cancer patients were thrown to the 'wolves' so to speak after treatment. 'Here go on with your life, see me in six months, call if you notice anything unusual.' Thanks. I'm not ready for that yet.'

Cancer diagnosis results in PTSD as well as emotional and physical scars. We need some extra care.

Clinical trials and long term after effects

So yesterday, after my deeply profound post on the long term affect effects of chemo, I went to a conference for people living with cancer. I sat through a couple of sessions on the state of cancer care and its future which were very interesting.

They were talking about new treatments coming out - for example additional treatments other than Herceptin for those who are Her2 positive. There were also some discussions on radiation treatment advances and how the new 3D and IMRT machines allow for more precise delivery of radiation - hence sparing nearby body parts which do not need to be scorched.

There was some conversation of things that are in clinical trials should be available soon or are even in the first round of human trials. So I started thinking about why are there no clinical trials for us longer term people? There was a clinical trial I wanted to participate in - for the recurrence vaccine. While I am not a fan of needles, I would be happy to get a series of shots if it could reduce my chance of recurrence. Then I found out it was only for people who were less than two years out from treatment so I was not eligible.

I understand that they want to have precise groups of volunteers in clinical trials which meet a specific set of criteria so they are comparing apples to apples with fewest possible interferences. These become very small groups. But it seems once you are through treatment, there are no trials available. And that seems wrong.

We are still people coping with a cancer diagnosis and once we get through treatment, we are excluded from research. No one seems to care about the long term effects. Too may potential variables which could interfere with a trial have entered our lives so no one wants to do any research with us. But we still count.

Their success is our problem

The doctor's successful treatment of us cancer people with chemotherapy and radiation is now our problem. Only now are doctors beginning to talk about the long term issues for people treated with chemotherapy. Well oncologists were more aware but other doctors not so much.

A recent study (because we needed another study) found that 6% of non cancer doctors knew about the long term side effects of chemotherapy drugs.

"While advances in cancer care have successfully kept more cancer patients alive, this new study finds there's room for improvement in their follow-up care. Primary care physicians and even cancer specialists need to be aware of the long-term effects of the drugs patients have taken to beat cancer.

Researchers at Harvard University, the National Institute of Nursing Research and the American Cancer Society surveyed nearly 1,100 primary care physicians and 1,100 oncologists or cancer specialists. They asked these doctors to identify the long-term side effects of four of the most widely used chemotherapy drugs used to treat breast and colorectal cancer, two of the most common cancers.

Overall, only 6% of primary care physicians and 65% of oncologists were aware of all the long-term side effects that the four drugs could cause.

When asked about the drug Doxorubicin, 55% of primary care physicians knew patients are at risk for cardiac dysfunction, compared to 95% of oncologists.

In the case of Cyclophosphamide, only 14% of primary care physicians knew women are likely to suffer premature menopause, compared to 71% of cancer specialists."

Doxorubicin is also know n as Adriamycin and Cyclophosphamide is known as Cytoxan. I was treated with these drugs during chemo. A friend of mine has impaired cardiac function as a result of chemo. All women are told that chemo was likely to put them into early menopause. But I do have another friend who was in her 20's when introduced. When she gets through hormonal treatment next year, they are going to start working on a baby.

I just checked on chemocare.com for details on side effects and Adriamycin is listed as having two long term side effects. It can interfere with the pumping of the heart and this can show up 7 or 8 years after treatment. And there is also a risk of developing leukemia years after treatment - I know two women who have had this.  Cyclophosphamide is only listed as possibly causing leukemia as well, nothing about premature menopause.

"... says that, in the past, medical training has not been focused on making sure physicians taking care of cancer survivors are adequately prepared to deal with long-term side effects.

In addition to chemotherapy drugs and radiation treatments affecting organs and tissues, ... also spoke about psychosocial problems patients can face, like fear of cancer recurrence. Problems with relationships also occur because patients are no longer functioning in crisis mode and reentry into a normal pattern is sometimes very difficult.

Experts agree that in the past, the emphasis has been to keep cancer patients alive, and that entire field of cancer survivorship is a pretty new one. But with the success of cancer care, more attention must be given to this area. ... points out that it's now recommended by professional societies for doctors to provide a survivorship care and treatment plan when patients complete their cancer therapy. Such a plan will inform the patient of issues they may face and they can share this information with their physician.

Not recognizing how a cancer survivor can develop treatment-related health problems is a concern. Link calls it a doctor-education problem and a patient-education problem, which he believes could be helped by better use of electronic medical records."

This means I need to educate my doctors. I do like my new primary care doctor but she is young and I will need to have a discussion with her about long term side effects. What didn't kill us may not have made us stronger in this case.

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 of 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?

What is wrong with these people?

Allow me to preface this by saying I am all for treating people with medical ailments normally. A friend's son is going to have scoliosis surgery shortly and my advice to her was 'treat him normally, he still should have to do homework, set the table, etc'. This is very important. They are human beings with an icky diagnosis. They shouldn't get to bend rules because of it. (I have another friend who was pulled over for speeding on the way to our support group. She burst into tears and told the officer she was rushing to get to her breast cancer support group and he just gave her back her license and registration and told her to slow down.)

But as a rule, treat people who have ailments normally. Just because I had cancer twice doesn't mean I get to cut in line at the movies or skip paying taxes (but I would consider it if it was legal). Keep treating me normally gives me the emotional support in that I am normal and I will still be here.

Sometimes there needs to be an exception or two. This woman is trying to finish her Master's degree and will finish her last credits in July 2012. She would like to participate in the graduation ceremony in May 2012. Chestnut Hill College is refusing this. Their policy is that, unlike most other colleges, students can't participate in the graduation ceremony if they have any outstanding credits to complete.The problem is she has an incurable form of Hodgkin's Lymphoma and there is a good chance she won't be here in June 2013.

Hello, what is wrong with you people? Do you need a smack in the head to get your brains in gear? Her oncologist has sent in a note as well as other supporters. This is a lifelong dream. She doesn't have that much time left. Your stupid rules are taking away one of the few dreams she has that she might be able to attain in her shortened life. Sometimes exceptions do need to be made and you stupid people are too stuck upon your policy to recognize when being nice could go along way. And your policy isn't even in line with most other colleges. So maybe its time to rethink this one.

This student has accepted this but she hopes the school will change the policy for others like her in the future. So please wake up and smell the coffee here.

Treatment options

So what if during your breast cancer treatment you were given a choice of treatments with essentially the same expected outcome:

- lumpectomy with standard radiation for 5-6 weeks, or
- lumpectomy with seeded internal radiation for 5 days known as brachytherapy

Which would you choose? Probably the one which offers the shorter treatment span. And what if we added in the note that the shorter treatment option would leave the patient with a higher risk (30-50% higher) of needed a mastectomy or side effects such as necrosis, rib fracture, or infections.

Hmmm.... that complicates the decision a bit. Me, I cant decide which one I would select. I can see the benefits of shorter treatment time and personally found radiation a real drag in that I had to go every day for so many weeks. I see the appeal in the shorter treatment time and if given the option that it would have the same expected outcome with the higher risk of side effects I would be concerned.

Side effects can't be undone. If you have a mastectomy,  necrosis, rib fracture, or infections they can be very stressful and never go away. You can't undo a mastectomy. A fracture, necrosis, or infection will heal but may result in more scarring or other long term damage.

In brachytherapy they basically stick radiated stuff inside you which has a definite 'ick' factor as well. I don't care what the half life is, I'm not sure I want anything left inside me.

What this is telling me is that just because a new treatment option sounds good, we need to be concerned with the long term side effects as well. We complain that the FDA can take eons to approve a medication or treatment protocol but they also need the time to learn about the long term effects.

Obsessing

So how much do us cancer people think about cancer? This summarizes it. Except the years are wrong. This was my life in the years surrounding 1981 and surrounding 2007.

You do see that it starts to taper down but with every cancer related appointment or medical adventure you get yanked back up to the top level. This is my life. Today, we'll just say I have a couple of cancer related appointments. How's my stress level? I thought I was camouflaging it well but have been accused of crabbiness over the past few days so maybe I am a tad stressed.

We'll see what the day's adventures bring.  First I will go to the gym to work off the fattening food I ate yesterday. Then I will get some work done before spending some quality time at the hospital. Then I get to go to a meeting if I am still sane.

There was an article recently in the field of Psycho-Oncology that talked about how the way the patient feels in terms of fatigue, symptom burden and risk perception caused the worry regarding recurrence. But I disagree. Once you have cancer, no matter how you feel, you are going to worry about recurrence. And the field of psycho-oncology? I think all oncologists should have a background in psychology to help their patients cope and improve their bedside manner.

All cancer people obsess over recurrence whether overtly or internally.

Predictive risk screening

We have all heard about genetic testing to see if you are more likely to get an ailment or not. I am not sure if I would do that or not simply because I am not sure I want to know. I can look at my family history without a genetic test to get an idea of what I might get. Oh, but there were no cases of breast or thyroid cancer in my family....

Actually the vast majority of breast and other cancers are not caused by genetic or family history. They just happen. There are risk factors that are known but the real reason of why someone gets it instead of someone else is not really known. But there is a fear among women regarding getting breast cancer. A lot of women are just scared of it.

So even though we do not have the cause ironed out, a company, BREVAGen, has developed a predictive risk screening test to see if women are more or less likely to get the disease. And they are selling it.

'"The vast majority of women who get breast cancer do not have familial history such as first degree relatives with cancer. For those patients, BREVAGen allows me to make informed decisions based on their individual risk indicators and genetics"... "Determining the appropriate level of surveillance is critical for patient compliance, early cancer detection, and controlling healthcare costs. BREVAGen helps me identify those patients that benefit from a more intensive surveillance. This proactive approach might include breast MRI and/or the use of anti-estrogen medications, coupled with patient lifestyle changes, all focused on the prevention or early detection of breast cancer." 

BREVAGen is a clinically validated predictive risk test that more accurately identifies a woman's unique risk of developing sporadic, estrogen-positive breast cancer. BREVAGen examines a woman's clinical risk factors, such as their lifetime exposure to estrogen, combined with scientifically validated markers to determine each patient's personalized five-year and lifetime risk of developing breast cancer.'

Hmmm... so they are analyzing exposure to risk factors. But that does not give us a cure.This is part of the role personalized medicine plays in helping treat patients. I am completely for personalized medicine but I am not sure what I think a company making money off analysis of risk factors as opposed to finding a cure. Yes this will help in getting the right women early screening and allow for early detection. But does it help prevent cancer?  Not really. Does it help determine the cause of cancer? No. Does it prey on the fears of women who are concerned about developing breast cancer? Possibly.