Wednesday, March 31, 2010

Conflicting information

Recently in the news have been all sorts of new ideas about how to be healthy. Of course they all conflict with each other. HEre are two pairs:

- The first article appeared a few days ago, 'Fatty Foods may be addictive'. Then this morning has a new article that Eat Chocolate to prevent heart issues'. So basically eat a small amount of chocolate daily but don't eat fatty foods (isn't chocolate fatty?) and don't get addicted (even though you are eating it daily) and you can reduce your risks of heart issues (as long as you don't get fat).

- The first article on new exercise guidelines that women need to 'Exercise one hour a day for weight control'. Then there was another article that said short periods of interval training are just as good or better than longer periods of regular training. But today has an article clarifying the situation - by saying ignore the new guidelines and stick with the existing ones. These are based on the 2008 Physical Activity Guidelines from the Department of Health & Human Services. (Thank goodness the government is involved here - I am sure they can write concisely and clearly, and they have a blog.)

I started reading these guidelines - which is many pages so I admit I went right to the part in chapter 4 on what's recommended for adults. It starts off by saying that 30 minutes/5 times a week or 2.5 hours a week are all that's necessary. A few paragraphs down it changes to read:

"Not all health benefits of physical activity occur at 150 minutes a week. As a person moves from 150 minutes a week toward 300 minutes (5 hours) a week, he or she gains additional health benefits. Additional benefits include lower risk of colon and breast cancer and prevention of unhealthy weight gain."

So that's it. I need to exercise more. But wait I do. I go for a walk about 5 or 6 times a week and most are close to an hour or longer. Unless my math skills are gone (with my chemo brain) that equals 300 minutes. So what's with the cancer and weight gain? (And doesn't 300 minutes equal five hours of exercise a week, or one hour five days a week - like the article they told us to ignore? If you aren't confused yet, you should be.

Maybe I'll just go back to eating chocolate, in small quantities of course.

Today I am going to work. Walter is away on business so I am here with the cat. I didn't set the alarm clock because I figured I can sleep a little later and wake up when I want instead of with the damn alarm clock. I forgot to calculate in the cat alarm clock. At 4:56 am, he decided it was breakfast time and sat on me to tell me about this. I am therefore up earlier than I normally get up. But I will go to work and then be done earlier so I can go for a walk in the sunshine - after days of rain.

Tuesday, March 30, 2010

Am I redundant?

Do I repeat myself? I think I do. I hope I don't but probably think I don't have enough different things to write about. I mean today I was going to write about an article in the New York Times about patients who want and receive unnecessary medical tests and are driving up costs. Then I realized I think I wrote about it a few months ago.

I can't write about my health because I did that yesterday. I can't whine about doctor appointments because I don't have any for two more days. I can whine about the weather. Because we have a flood watch (with National Guard mobilized) and I have to go drive in it. I can whine about idiot drivers (who drive on the interstate with their turn indicator on for miles and then decide to switch lanes without looking). I can whine about back pain, but then I always whine about it because basically it always hurts.

So for a change, I'll tell you about the cat. He is much better. The fur that was shaved off for his ultrasound has basically grown back. But he has turned into the pickiest eater on the planet. If he liked something yesterday, he will not like it today. He no longer likes treats, of course because I stocked up on all kinds. He no longer will eat his dry food, of course we have two open bags. But he will eat freshly cooked (only) chicken and canned tuna (for people, not cats). He won't eat food that is put on his tray where it belongs but eats only when his dish is in the middle of the kitchen floor. So I cheat and mix tuna with his cat food and he usually eats it. But since he ate it yesterday I assume he won't eat it today. Its a daily challenge but preferable to dealing with my medical issues.

Monday, March 29, 2010

Time for an update on me

I guess I should update on how I am doing these days. I mean this blog was meant to be about me and my health so I might as well stick to the basics, sometimes.

My back is a pain. I mean it causes pain if I do things like stand, walk, etc. The worst pains happen when I walk or stand for more than ten minutes or so. The last injection has alleviated a lot of the sharpest pains in my right sacroiliac joint but now I can focus on other back pain issues. I go back to the back pain doctor's physician assistant on Thursday where I will see if we can get a plan going for getting rid of more pain.

My ankle is also a pain, but one that comes and goes. Sometimes it is bad and hurts a lot and sometimes it is not so bad. The question I am still dilemmaing about is surgery or no. Because of my arm, I can't use a crutch on my left side. I go back to that doctor the first week of May.

My arm is doing okay. It still doesn't feel right. I am trying to get back in and see the lymphedema lady. I do my exercises but I don't know, it doesn't really seem much better.

Now all that cancer crap will be dealt with on a day in May where I have, are you ready, SIX appointments. I have a mammogram, bone density test, blood tests, and see my oncologist, surgeon, and dietitian. I can't wait. I think my way of getting through the day will be to take half an ativan before leaving for the hospital, as well as a really big book. My appointments keep me there until 3 pm. What a wonderful day. I can't wait.

So how do I feel these days? Stupid headaches with some frequency but I did get my eyes checked on Friday thinking maybe its my glasses. (The eye doctor walked in the room and asked 'so how is your health generally?' and I said 'you haven't seen my medical history have you?' and he said 'I guess that answers my question.' I love breaking in new doctors.) I have other assorted aches and pains but I think everyone does over the age of 25.

Otherwise, I am fine.

Sunday, March 28, 2010

I guess I'm unusual

Call me unusual, odd ball, weird, one of a kind (in a nice way), eccentric, or whatever, but I am a rare kind in yet another way - apparently because I ask questions of my doctors. Not only that I keep lists of questions for each doctor on my computer and update them periodically and print them out and bring them with me to my appointments.

This doctor referenced a study where most patients didn't ask questions and then those who did averaged two questions. What are you waiting for? This is your appointment - here are some suggestions of what to ask:

Why are you there? What did you want to find out? What hurts, what doesn't hurt? What will this new medication do? How long do you take it? When to stop taking it? What happens if you don't feel better? How long should it take to feel better? Why am I having this test? What are they looking for? When should results be available? How will the results be given to you? What are my other options?

In addition to my list of questions, I bring a list of issues I am having (because I never have regular check ups any more - there is always something wrong). I try to document when things happen. How long they have been going on, what I am doing when they happen, etc. I've even had my doctors ask if there are any more questions on my list.

Okay, I am not the perfect patient but I do know try to treat my doctors the same way as any other professional providing a service to me for a fee and ask questions. When I bring the car into the garage, its because it makes a funny noise when I hit the brakes that I can't drown out with the car radio. And this means our poor vet must feel interrogated when I go in with the cat with his lists.

Saturday, March 27, 2010

Honesty is (almost always) the best policy

I am full believer in honesty is the best policy. I don't think lying or avoidance can solve problems. You should just tell the truth. Sometimes you need to be polite about it but honesty is usually the best thing in the long run.

But (and you knew there was a but coming) sometimes I do omit some things. If you want to know how old I am, I'm 29, the same as I was last year. If you want to know what I weigh, that's none of your damn business. If you want to know how much weight I want to lose, its 25 lbs. If you want to know my goal weight, its what ever it takes to get me back in the clothes in my closet. If you want to know what I had for dinner last night, its officially listed in my sparkpeople log as 'yummy but diet busting meal out' for lots of calories and fat grams.

We went out for tapas (lots of little Spanish dishes) last night. We had salads and then six little dishes that had things like crab, avocado, duck, chicken, etc. My husband laughed at my entry and then I said to him, you figure out what we ate. He started to think, laughed again and said, 'you probably should just leave it with that'.

Just so you know I didn't fall off the wagon, this morning's breakfast was fat free Greek yogurt with a banana, properly documented of course.

Friday, March 26, 2010

My lack of brain

From time to time, I admit I have been a bit snide about other people's mental capabilities - idiot drivers, co-workers, store clerks, etc. But I do not claim perfection in this at all. This has been clearly demonstrated recently.

- Six months ago I made an appointment for my annual physical in late April with my primary care physician who is notorious for booking appointments months in the future. Last year I ended up seeing her physician's assistant due to a scheduling problem on her end but this year I wanted to see the doctor herself - nothing against the physician's assistant but I figure sometimes I should actually see the doctor. I also have known about the date of the Stowe Weekend of Hope for a year. For some moronic reason I made the appointment for the day before the conference and then booked us into a hotel in Montreal for the week. It was only yesterday that I realized I can't be in two places at once. When I called to reschedule my doctor's appointment, I found that she is now booking appointments for September, or I could see the physician's assistant in May. I'm seeing the physician's assistant in May. I'll try again next year.

- In January I met a friend for lunch and we got one of those surveys - go enter it online and get a $5 coupon off your next visit. I took the survey home and got us the coupon and we met again for lunch on Tuesday and used the coupon and got a new survey where I said I would repeat the process. Well I know I brought the damn receipt home but can't find it anywhere. Grrr.

I think I could expand this list with more examples of my being brainless but I don't see the need to amuse you any more.

Today I will make every effort to hold my brain together. I am going for a walk this morning - once the rain lets up - and then to the eye doctor. I have been having some headaches regularly recently and figure this is a good place to start. If not maybe allergies? I don't know. I do know I need to scrape together the remaining brain cells and remember to bring my list of medications and prior eye prescription with me. Then I am getting my nails done and we are going out to dinner.

This dining out thing is hard on my diet but its been Restaurant week for the past two weeks and we always use it as a time to try new restaurants we can't afford or just haven't tried. Then the dieting will begin in earnest but the scale is already saying happy things to me.

Thursday, March 25, 2010

Wishful thinking

I have seen dozens and been told of many more 'new cures' for cancer. Some of them are quackery, some of them are real but are only considered hopeful leads but no real breakthroughs. With cancer, we are constantly hopeful there will be something new.

My lymphedema is not much different. Again its something without a cure. It only can be managed through exercises, compression and massage. Your arm, or other appendage, can swell up permanently and never return to normal. Basically, your drainage system is broken and irrepairable.

Then I found this, a woman had lymphedema and then had a lymph node transplant and her arm recovered. A bit of wishful thinking on my part would be to have something that can actually be cured. Cancer isn't going away. Back issues aren't going away. Maybe someday lymphedema can go away. I know I must be patient because this is only one documented case and my arm is not that bad now. However it is nice to know that if it ever became really bad there might be hope for a cure.

Wednesday, March 24, 2010

Blog comments

I love having a blog. I am amazed people actually read it. Then even more amazing, people comment on it. This to me is astounding. When I first ventured out in to the online world, I wouldn't leave comments - I mean what if someone read what I wrote? How embarassing!

Then I started a blog. At first, it was set to comment moderation where I had to approve all comments before they are posted. I was chicken - thinking people would write MEAN things about me and my blog! No one did. Everyone was nice. So I gave up the moderating thing - fewer emails for me to deal with. But I did stick in a Capcha (that little block where you have to type in the letters to prove you are human and not a computer) to prevent some spam.

Most of the comments are from friends and other bloggers. I love reading them and commenting on comments and reading their blogs and making new virtual friends. (No these are not imaginary friends like when you were a child.) Virtual friends are the ones I have gotten to know online and follow their ups and downs but probably never get to meet them in person. But that's okay. We can be friends without meeting in person.

However, I still get some weird comments. Yesterday someone left me a comment about another comment who was basically selling their stuff and have no cure about the 'cure' they are recommending. I used to go in and delete them but now keep them for their entertainment value. The latest one I have now gotten twice is there is an iPhone app that works with GPS to tell you where the nearest mammogram center is. Hmmm.... Well, if I had an iPhone, you can be sure I would want to know where the nearest mammogram center is so in case of an emergency where I needed another mammogram, I could run in and get one. Is there such a thing as an emergency mammogram? (Honey, its 3 am but I need an emergency mammogram? Sorry to wake you up but I don't feel right driving there by myself.) I mean don't you want to get one with your regular doctor as normally scheduled? Clearly in the case of what were they thinking...

I think a while back (and clearly chemo brain is acting up) I found one comment offensive and deleted it. Basically my thoughts are that if you are selling something, don't sell it in a comment on someone else's blog, get your own damn blog. By spamming other's blogs with 'cures', you looking like a quack.

Anyway, please keep commenting. I promise to keep writing.

Tuesday, March 23, 2010

Healthcare reform, take 2

Yesterday I wrote about health care reform and one commenter agreed with me and one disagreed with me. This morning, I checked the latest survey on CNN.com with the question: What is your reaction to the newly passed health care reform bill? For it: 44%, Against it: 40%, Not sure: 16%. So two little samples showing us that it is splitting us into two groups.

Now I am not sure why people are for or against it. Is it the big picture idea that is good or bad or some of the key line items that are causing such strong emotions for each person. That is what is so great in our country, we are all entitled to our own opinions and able to speak them. We are each entitled to our own opinions. I am only sure that this bill is a needed start to reforming our health care system and I am also sure that it will be tweaked and changed in coming years and decades so what ever it is now will only bear a faint memory to what it will become over time.

Enough of that. I can only bear so much political/legal discussion early in the day. Today is another dreary rainy day. I do not have to go to work. But I do need to go to my therapist, meet a friend for lunch, and get my hair cut. This means going out three times in the rain. If I am a good person, I will also go out to the gym. I don't think I'll be staying very dry today. And I think we are going out to dinner. But at least I don't need to go to work. Yesterday I worked all day and was tired - how's that for news?

Monday, March 22, 2010

Thoughts on healthcare reform

Now that health care reform is making its way towards implementation, I do have some thoughts on the issue. I have been staying out of the discussion because this isn't a political blog. But I do think:

- something needed to be done with a system which was bankrupting patients who are diagnosed with a serious medical condition or has a life changing event. How is it right that you pay insurance premiums for years and then when diagnosed with cancer, your policy goes up and your claims are denied and you end up hundreds of thousands of dollars in debt?

- low income or financially strapped people are entitled to health care, and in the long run, this could save millions of dollars and thousands of lives by preventing medical issues before they become serious. On one of my cancer message boards a woman posted that she was married with four children and she had no health insurance - but the rest of her family was covered and she was just diagnosed with breast cancer. She was horrified that the bills would bankrupt them.

- the national healthcare systems of England and Canada should show us some lessons in what works, but more importantly, of what doesn't work and should be avoided. From what I have seen of both systems, I would prefer not to have to deal with anything that resembles either of them. I used to travel a lot to the UK and would hear horror stories from co-workers and on the news of delayed care, until the point of death, or poor care. I have heard from friends in Canada that while care is good, it can take weeks or months to get an appointment.

All that being said, I think the legislation is a step in the right direction to lessen the gap between haves and have-nots in the medical sense here in the US but still there is a lot to be done.

Sunday, March 21, 2010

The magic wand for cancer

There isn't a magic wand. I was discussing this with a friend yesterday who also is living with cancer. She said people shouldn't consider themselves cured after treatment for early stage cancer. Once you have it, there is no cure. They can treat it until there is no sign of cancer to be found through surgery, radiation, chemotherapy, and other therapies. They can run out of tests to find it. They can tell you that you are done with treatment. They can tell you that you have a good prognosis. But they can't tell you, you don't have any cancer cells left in your body.

Once you have a cancer diagnosis, early stage or not, you can't assume that you are safe once treatment is done. You have to be vigilant and get follow up tests and treatments. You can live a normal life but you can't escape the fact that it was in your body once and they didn't cured it - they removed any signs of it and can't find any more - but they have no way of knowing if they got it all.

Am I being grim and morbid? Or am I facing facts? My friend was telling me this because another friend of her's just died who was diagnosed with early stage breast cancer just three years ago. She was treated but it came back. There is no magic wand.

Saturday, March 20, 2010

Juggling

I am juggling here with this weight loss thing. It is harder than I thought to figure out how to eat enough food but not go over both calories and fat grams but still feel like I'm eating enough and not starving all the time. The key is how to keep calories and fat grams in the right range.

In my short adventure into weight loss, I have discovered snacks are what is ruining my diet. Cheese to be precise. A nice healthy lifestyle and then I sneak in cheese and crackers for a snack - which is more than 1/2 my daily fat requirement in a brief period of time. No more snacks except fruit and vegetables.

Yesterday was Friday so there were donuts at work. I had 1/4 of a chocolate donut (as nasty but yummy mixture of carbohydrates, grease, and sugar) and felt like I had some and wasn't deprived but didn't blow my diet either. Its also restaurant week so we went out to the Capital Grille (very fancy steak place) for a discounted rate. I was careful about what I ate and didn't totally ruin my diet either. I think I can juggle this if I watch my snacks. Snacks are bad.

Today's plan is to go walk on the beach. In the past this was followed up with my secret indulgence - fried clams. I just did a little research and found out that if I have them, that will be my entire daily fat quota. I just had clams a few weeks ago on my mother's birthday. I'll save my next fix for another special event. Sigh. They are evil and fried but I love them. Ooh! But I could have steamed clams without butter! YUMMY! I can still get my clam fix. Yippee!

Okay, I'm back. I went and thought for a few minutes. I need to clarify. I do not eat fried food regularly. I had clams a few weeks ago and hadn't had them in six months. My work brings in donuts on Fridays but sometimes there are bagels instead. I haven't been working Fridays and have been avoiding them. Besides - it gives me another reason to have a three day weekend every week (except this week as I go back to work on Monday as well).

Friday, March 19, 2010

The lost group

Teenagers with cancer don't really fit into a kids group or an adult group. You are too old for a pediatrician never mind a pediatric cancer group full of little kids. You are too young to be treated as an adult because you aren't able to make your own medical decisions or, if you are 18 or 19, all of a sudden HAVE to make your own decisions.

Also, as a teenager, doctors ask embarrassing questions about bodily functions you wish everyone would ignore and then there are all these people who look at your body. When I had my thyroid cancer surgery, I remember waking up in a different johnny than I had gone into surgery with. This meant people had seen me naked! How appalling!

I have a friend who had cancer at a similar age, both of us nearly 30 years ago. Back then no one talked about cancer. Support groups were for old people. We were both, separately treated - I didn't meet her until 15 years later - were told basically to just resume our lives with no support.

Times have changed and its for the good in some ways. But still the teenagers who are dealing with cancer, need more support to meet their needs.

Thursday, March 18, 2010

Not the answers I wanted to hear

As a result of my lovely cancer and other medical adventures, I have gained weight and now weigh more than I have ever in my life. I have tried to eat healthy, blah, blah, blah, and it hasn't worked so I broke down and went to a dietitian yesterday for some help. She looked at my medical history and the list of medications I am on and said it will be very difficult for me to lose weight. Ever. Why?

- Because three of the medications I am on cause weight gain. I asked why they cause weight gain and she said they don't really know - whether they interfere with how food is digested or what.
- Because I don't have a thyroid so they can't really help me increase my metabolism to help lose weight.
- Because of my back, ankle, and arm issues, increasing workouts is not advisable with out help from a physical therapist.
- Because other issues in my medical history make it difficult to lose weight including menopause (thank you chemotherapy for that one).
- And, when/if I have ankle surgery and am in a boot/cast for three months, I can hope to only maintain and not really continue to lose any weight.

Which by the way, if I maintain a strict low fat, low calorie diet, I should hope to lose around 0.5 lb/week. That wasn't in the script - she was supposed to say here's a plan that includes yummy foods and will result in a skinnier you in three months.

In the meantime, she said I should take my food journaling online and use sparkpeople.com to track what I eat and see what I am eating. I started this yesterday and learned an interesting fact - its not meals that are doing me in but snacks. No more snacks unless they are fruit and vegetables.

Oh, and this is a permanent lifestyle change, not a short term solution. Bummer.

Wednesday, March 17, 2010

Words, take two

I posted yesterday about how I don't like certain words to describe cancer and dealing with a diagnosis. A comment in reply did point out that some people actually feel empowered by them. This is a reminder that every one is different and every cancer is different. Just because I don't like something doesn't mean everyone else doesn't. And what works for me doesn't work for others. Well, doh!

Otherwise, I am doing okay. I am still dilemmaing about my ankle - surgery or no. Sometimes its fine and sometimes it hurts. Like right now while lying in bed. I am undecided. I heard back from the lymphedema lady and will be going back in to see her. Puffiness in my hand isn't a good thing and its been happening fairly regularly. My back is having good days and bad days.

Today I am making a positive step. I need to lose weight. I have to lose weight. What I think is the right thing is not working. Today I am going to see a dietitian to see about getting me back on track. I am optimistic here.

I am also off to work this morning. I got there yesterday and they had minor flooding, a damp modem, and no internet or email. I can only be so productive but when updating websites, I kind of need that internet thing. I will call in a little bit about going today.

Finally I had a phone interview last night for a job I interviewed about a few weeks ago. I actually was called to set up an interview but ended up spending 30 minutes on the phone and will go meet them Friday.

So right now I am procrastinating in bed because I had another bad night's sleep. Which leads to crankiness - especially when one's husband holds the remote control out of reach and starts putting the tv on annoying infomercials in an effort to get me out of bed. Grrr! I won't get mad, I'll get even - one of the joys of marriage. Perhaps we will watch a few cooking shows or he can hold my purse while clothes shopping or something. But I am awake now and that's the whole point.

Tuesday, March 16, 2010

When words don't work

Dana Jennings nailed it here with his discussion of words used to refer to cancer people. I really dislike the word survivor, victim is not even worth mentioning. I am not battling anything. I AM A PERSON LIVING WITH CANCER AND TRYING TO KEEP MY LIFE TOGETHER AS THE NEW ME.

I have long since decided that when I die many years from now, I will have prewritten my obituary which will not include any of the ridiculous words such as battle, victim, survivor, etc. It will discuss life and what I like to do.

Also, no cancer is a good cancer so don't try to tell me I had a good one. The impact of cancer is that you are treated differently for life. Doctors put you at the front of the 'should we check for anything else' line.

I think his article touched a nerve here with me. Hmmm.... Okay, off to work this morning, driving around the soggy New England landscape - 9" of rain in 3 days has led to a tiny bit of flooding. But I'll wear my boots. What's worse? Cancer or getting my feet wet? Its all a matter of perspective.

Monday, March 15, 2010

1,000 posts - and I'm still writing

And you are still reading... Not sure which is more significant. I started this blog 1000 posts ago, nearly three years and it was supposed to be about dealing with breast cancer. Well, there has been breast cancer and all sorts of other ailments, issues, procedures, tests, adventures, misadventures, hot flashes, chemotherapy, radiation, nausea, surgery, prescriptions, fits of crabbiness, whininess, and other mood swings, humor, cynicism, optimism, hope, fear, panic, depression, and finally a new me. But is it a new me? I'm still me. I'm still dealing, healing, coping, fighting, striving, hoping, and being a patient.

What is that saying? La plus ca change, la plus c'est la meme chose. The more things change, the more they stay the same...

1,000 posts is a lot of words, but maybe I have another 1,000 in me? I write daily before I get up and start my day (on a laptop in bed). I never thought of myself as much of a writer but ended up in a career which requires a fair amount of writing and have managed to keep this going (even though there was a high school English teacher who told me I was a terrible writer). Anyway, thank you all for reading and I'll see if I can keep up my end of the deal.

Sunday, March 14, 2010

It IS all in your head


While wasting time online and stressing about my health yesterday (oops I mean expanding my intellectual horizons), I came across this article. Now it is long but definitely worth the read.

First of all there are lots of us who have had the privilege of getting cancer. (You note I call it a privilege because anything else just wouldn't be worthy.) And the ones of us who do the best in the long run are the ones for whom outreach and hope keep us going.

I can tell you when I changed from hopeless to hopeful. Shortly after finishing chemo, my husband and I went to a museum where the gift store was selling off their supply of holiday items. One of the things on sale for 90% off was the word "Hope" in big red letters, a foot tall, to hang on the wall. I splurged the whole $3 and brought it home and hung it on the wall of my office where it is to this day.

It is also about the same time, I learned that I can help others. I went from being a whining shriveled up blob of stress and concern to happy to help others. I started volunteering and learning how to help others. All of this helped me learn to better deal with my thyroid cancer as well.

Part of learning hope is learning to cope and taking charge of what we can. So we take our eternal optimism off to every doctor appointment and through every ache and pain and test and procedure. And life goes on.

Saturday, March 13, 2010

Exercises can be dangerous

Every day I get down on the floor and do my back exercises twice a day with a big exercise ball, then I do my arm exercises standing up, and then I stand on the balance board and balance disk and do my ankle exercises. Well, yesterday I seem to have been lacking that key trait that can be very helpful in life - coordination. As I was getting down on the floor to start my back exercises, I twisted and jolted my back simultaneously in a distinct lack of adeptness and my back gave a nasty jolt which continues to this moment. No I wasn't doing my exercises I was getting ready to do my exercises.

I have no idea what I did. I have pain meds. It is bearable with drugs. My thought is if it still continues Monday, I will call the doctor. No this is nothing to do with the injection I received on Thursday - that actually feels fine. This is a new, never before experienced pain, that is just nasty. This may lead to crankiness as well. In the meantime, I'm just going to take drugs and attempt to go about my day. I have already been informed that I am being whiney but that will just have to do for now.

Yesterday I also went to work, got my nails done, met a friend for a walk, and was supposed to go out to dinner with my parents. My father is recovering from his broken leg and is wheelchair bound. To go out for dinner, we need an able bodied person to put the wheelchair in and out of the car. This was going to be my husband but he ended up working until 10 pm. Grrr! Today I hope we can get out for a walk before it starts raining. I'm just going to take my drugs and ignore my back.

Friday, March 12, 2010

A nicely non-eventful day

Well, it wasn't completely non-eventful but it was not traumatic or stressful, mostly. My husband delivered me to the hospital for my injection. As planned I was there early and had time for breakfast - yogurt and banana - before heading for my appointment. I told the nurse (both nurses remembered me - I think I am a frequent patient or something) before hand that I was hoping to avoid the previous outcome where the back of my leg hurt and I left in a wheelchair.

The injection itself is okay. They clean off your lower back and then inject a pain killer so you don't feel the needles. This can cause a little discomfort but not really. Then they stick in a big needle full of steroid which can produce amazing amounts of pain down the back of your leg and across your hip that goes away in about 20 seconds. Then they stick in a second needle full of synthetic cartilage which hurts briefly as it goes in. And then you are done. They bring you back out to sit and make sure no adverse reactions - in my case, I got to take a lap around the post op area - and they send you home with an authorized driver to bring you.

My sister drove me home and I took a recommended pain pill and did a little work before we took her dog for a walk. My (lack of) brain cells allowed me to set off the car alarm trying to get my cell phone out of the car, bring a shopping bag so I could buy cat food but forget any money to purchase it, and spend the balance of the day watching TV and crocheting on the couch. Eventually I made it back to Trader Joes for the cat food but that was it.

This morning I am relatively pleased by the lack of pain level in my right SI joint but it will take a few days. I am slightly displeased by the pain in the back of my leg but will follow the instructions and wait two weeks before calling them back with how I am doing. They want you to wait two weeks because the short term effects can be much different than the long term ones and those are more important. So I will go back to being the patient-but-whiney-patient for the duration.

Today I need to get my butt in gear and go to work this morning. I then have a busy afternoon of meeting a friend for a walk and then getting a manicure. I just need to decide what color...

Thursday, March 11, 2010

Fact: Stress Erases Brain Cells

Last night I met my former support group friends for dinner. Its amazing that two years later, we are still meeting for dinner or coffee almost monthly. We all met in a weekly support group program for newly diagnosed when we were all in chemo or about to start. Now we get together to keep each other up to date and talk about all our medical crap.

As I was driving there, I was thinking about the fact that I had five medical things to tell them about. I got there, we got seated and I started talking (and was informed I looked a little stressed). I told them about my ankle and probably surgery. I told them about my lymphedema. I told them about my ultrasound. Then I was asked what are the other two things... I told them about my SI joint injection this morning. And I can't remember what the fifth thing is that I told them about. Stress has erased brain cells. I came home and told my husband and he asked what the five things were and I couldn't remember. He laughed at me. I blame stress.

As I mentioned this morning I am having a steroid and synthetic cartilage injected into my right SI joint. I can't wait. The injection does hurt. The feeling of the steroid going in can be relatively painful. Last time after the injection, I had significant pain in the back of my right leg and ended up in a wheelchair on percocet. I am hoping for not a repeat of that situation and am relatively stressed. However I have a pill for that and will take half of one before I go. The good news is I should be home by 10 am at the latest. I will look for my brain when I return home.

Wednesday, March 10, 2010

I'm dilemmaing

If its not a word, that's okay. But I have a dilemma. What to do about my ankle. At the last doctor appointment, I was told that it is at a chronic state basically but there is a chance it will heal on its own as the weather gets warmer. My next appointment is early May and if my ankle is better, I should just cancel it. By definition of better means 'to a state where I can live with it'.

Then I met with the lymphedema nurse who recommended just having the surgery to prevent falls and further injury to my arm.

My ankle has two injuries - a cartilage chip and a partially torn ligament. One is on the outside and one on the inside. I know this because they take turns hurting, when they don't both hurt at the same time.

The surgery itself isn't bad but it means six weeks in a cast and six weeks in a boot, followed by rehab. That adds up to three months of impeded walking. There is a chance I only need the cartilage clean up and that would mean two weeks in a boot. Its my left foot so I can drive so that's not an issue. I'm not really concerned with three months of impaired mobility. I am more concerned about my arm, long term issues, and generally just getting better.

My dilemma is three fold:
1. I can just live with my ankle and skip the surgery - I can always have the surgery eventually. I would need to continue my ankle exercises until some time when I just give up on them (or it magically stops hurting).
2. I can wait until I see the doctor in May on the faint hopes that it will heal itself but will probably end up having the surgery.
3. I can go ahead and call my doctor now and schedule the surgery sooner.

I think option one is not really an option unfortunately but the idea of surgery is not a happy thought. It would be number nine if you are keeping count.

I don't know. I am very tired today - couldn't fall asleep, woke up a couple times and am up too early because my husband has an early start today. Maybe I should just let my dilemma slide until another day when I am awake.

Tuesday, March 9, 2010

Doctor shopping

Choosing a doctor isn't like shopping for shoes on sale. Nor is it a case where you just have to accept who you are assigned. Its more like dating. Yes really. Its the chemistry that counts. See 'Speed Dating Doctors'. No lie!

When my husband was dealing with his malignant polyp last fall, we were driving to the hospital to meet the surgeon for the first time and we were talking about the meeting. I reminded him that he didn't have to go with this surgeon if he didn't like him. On the way home, he said he liked the guy, his personality, and his style. This was very important to him.

My doctors are important to me. I need to be able to communicate with them. My primary care, who I have been with for about ten years, has been very verbal in telling me how to communicate with doctors. She says things to me like 'don't tell me you have a pain, tell me the story of your pain - what you are doing when it hurts, what you ate, how bad it was'. Her advice has served me well with my other doctors. My computers are littered with little notes for doctor appointments. Sometimes I just start writing my notes and then see patterns I didn't see before.

I think we have progressed beyond the doctor is a god thinking. Think of a doctor as a professional who you hire their services. If you don't like them, find another. If you take your car to the garage and feel like they don't give you a straight answer and talk down to you, would you go back? No. Same with your doctor. Find a new one. What is the point of paying for medical services and not getting the care you are paying for?

This is not a science and there is a little room here. One of my surgeons came highly recommended and I thought he was a bit of a stuffed shirt but okay. I figured that I was having him for one operation, not seeing him monthly for the rest of my life so I could deal with the attitude issue. In the end, I decided he was actually a nice guy. So maybe he wouldn't have passed the speed dating test but it worked out in the end. Sort of like the guy you go out on one date because he had awesome concert tickets and decide there will never be another one but you still got to go to the concert.

In the meantime, two days until my next big needle in my back routine. Can't wait! NOT! Actually if it has the same level of success as the last one, it should make a big difference. I still haven't called my ankle surgeon but think I will as I am sick of dealing with my stupid ankle pain. Stupid is because I did it to myself in a nanosecond of idiocy where I tried to look over my shoulder while walking... Otherwise, I am doing okay but need to motivate to go to work soon.

Monday, March 8, 2010

Timeliness

I try to be punctual. People who are chronically late drive me crazy. However this weekend, I realized I was making people wait. Saturday night I thought I had agreed with my brother that he would call me when he woke up and we would figure out our time schedule. He thought I would be there at 8. He called me at 830 and asked me where I was (he was still eating breakfast). I said I would be there by 915. I left here at 915 which means I was late. Then it turns out all the plans changed Saturday night after I left which is why I didn't know the schedule. But I did make people wait, which I hate to do. Now this was a family event as opposed to a work or doctor thing.

I have a part time job where they said I can pick my own schedule. It has taken me 8 months to get used to the fact that I can come and go as I please. I used to say I would be there at 830 and stress myself to get there in rush our traffic. Now I have finally given that up and just tell them what days I will be there.

But when I go to doctors, I get an appointment sheet that tells me what time my appointment is - this is the time the doctor will see you after you have checked in, been weighed and interrogated by the nurse (are you safe at home?), and changed into a lovely fashion statement gown that leaves you exposed. Then the doctor comes in after the appointed time because they are running late - could this be caused by late patients?

The appointment sheets I receive instruct you on the back to arrive 10-15 minutes before your appointment so you can get checked in, weighed, interrogated, and changed. I really do try to do this so I won't keep people waiting because I think that is the rudest and most disrespectful thing. And I would prefer to get the damn appointment over with and get on with my day.

I worked in the legal profession briefly (not as an attorney) and learned a sense of punctuality I have never seen equaled) where if a meeting is due to start at 10, it starts at 10 and ends when scheduled - whether 1 hour or four hours later. These are people who were trained to bill by the ten minute segment and are very time conscious.

Then I met my husband with the military training. I believe when you are leaving the house at 8, you are walking out the door with your stuff at 8. He believes that you are in the car which is completely packed and turning the key at 8 exactly. We do differ a little here but he helps keep me on time.

There are reasons for being late, a whole range of them, but if communicated by a phone call or message to say you will be late, is allowable, they are perfectly acceptable. To just show up late, chronically is rude and not acceptable. Is there any reason if you agree to be some place at a time - such as work, doctor appointment, meeting - you can't plan so you get there on time?

If you are late for your doctor, you are going to cause them to run behind all day. On the other hand, if your doctor is running excessively late, they should tell you as well. My doctors generally do tell you if they are running late. Its all about respect and caring.

Sunday, March 7, 2010

Doctor discussions

So you get some not so great news from your doctor. What is your first response? Are you sure those are my results? Is there any other way to check this? What next? I have learned the next thing to do (after surfing the internet and convincing myself my situation is terminal) is to pick up the phone and call the doctor back and rationally discuss the results after I have digested them.

I think when a doctor delivers the bad news, your brain hears one bad word and goes into overload and shuts down. Nothing registers and you blindly agree to whatever they say because you can't comprehend the impact. Often this news is delivered in an inconvenient place - on the phone while you are in a place you can't talk or have no reception, or when you are unexpectedly sitting in a little exam room dressed in a 'Dr Seymour Butz' gown and you are feeling a little exposed.

Based on few thousand experiences with this type of news, I have now learned to listen to what they tell me, get a copy of the pathology report and then research the crap out of it (and convince myself that its horrible) and stew over it for a few days and then call my doctor back to discuss it rationally and talk about options. This week I need to call my ankle doctor back to learn about options. With lymphedema I can't be on crutches so what's with the cast after surgery, can it be a walking cast? I need to get my two cents worth in. Also my goal is to lose some weight so how can I continue to be active while in a cast? (No I won't go for long walks in a walking cast but I certainly don't want to sit on my fat butt for the duration.)

Either way I will have a nice rational discussion ahead of time when I can talk and I have phone reception so I feel calm and in control.

Saturday, March 6, 2010

Who is this twit?

And I use the term loosely. The author of this should be shot? no too kind... beaten about the head with a baseball bat? possibly... I don't believe in violence but this twit wrote:

"Even though thyroid cancer is a disease that cannot be prevented, it is a curable affection and can be treated by using an appropriate treatment."

The problem I have is with the word curable tied in with the word cancer. (And affection is not necessarily the term I would use. But then he also has some typos in his post.)

The sad thing is this is on a website called Thyroidcancersupportuk.org. This website seems to consist of sporadic book reviews on titles related to cancer even though its sub title is: "Information about thyroid cancer treatment, clinical trials, research, and other topics from the National Cancer Institute". Just another lesson in don't believe everything you read on the internet.

I believe that the correct stance on thyroid cancer is that is a very easily treated cancer and most early stage thyroid cancers have a 100% five year survival rate. But once you no longer have a thyroid you require a life time of medical supervision. And it has been know to recur up to 45 years later. I am not a medical professional but I do know that there is no cure for cancer. Even if you get a stage 0 diagnosis, you get a lifetime of medical diligence.

Grrr... Twit indeed!

Friday, March 5, 2010

Weight loss secrets

The other night I attended a support group where a dietitian came in and gave us all sorts of advice on how to lose weight. You know - eat vegetables and fruits, stick to a plant based diet, drink water, exercise, skip fattening snacks, blah, blah, blah. Then she said the magic words, "we try to get a patient's metabolism moving". I said "I don't have a thyroid". Light dawns on me, if I have no thyroid how can I get my metabolism moving. Call me slow but perhaps this is the issue (and it has only taken a few years to figure out). So the result is I have asked my primary care physician for a referral to a dietitian who is affiliated with the endocrine department.

These pesky pounds that won't go away are very frustrating. Its not unusual to gain weight as we age but for me its been exacerbated by medication which causes weight gain and other issues, its a royal pain in the butt so to speak. Anyway so that is my next stop.

Yesterday I got my lovely medical beige compression sleeve. It goes from arm pit to wrist. I was told 'its like wearing a girdle at first. Initially it drives you crazy but then you don't notice it.' I have never been a girdle wearer so I don't have much to compare here but I wasn't overjoyed at the concept. So after wearing it for one day what can I tell you? Its pretty yucky. Its very tight and when I went to the gym and walked on the treadmill it was downright uncomfortable. I was told to wear it from when I get up in the morning, immediately after showering, until going to bed at night, wash it nightly in the sink (this will help soften it). Last night, I got in my PJs early so I could take the damn thing off. I can't wait to take a shower and get dressed this morning.

Today I am off to take my car to get fixed. It failed inspection and it turns out I basically have only done oil changes and checked the brakes for the past four years. So now I am getting the 90,000 mile maintenance at 135,000 miles and a few other assorted things (replacing the original wiring harness for example). I am getting a rental car for the day - which is deducted from the cost of the repair - but after running a few errands, I will work from home and go for a walk. How exciting.

Now I have to motivate to go take a shower so I can put on my lovely sleeve and do all my exercises and eat a healthy breakfast.

Thursday, March 4, 2010

About those daily walks

For the past ten years or so I have taken a daily walk. Well I admit I used to walk seven days a week. Currently I probably walk 5+ days - simply because in the winter it get dark early and some days I work all day and don't have time. Yes, I go for a daily walk with my bad ankle, my bad back, and assorted other ailments. At no time has anyone in the medical profession suggest I cut back on these walks. Even during chemo and active treatment. Except I did not walk for the first month after spraining my ankle when I was in a boot and I missed it greatly. If I have ankle surgery, I am sure I would have to skip them for a month or two again.

What do I enjoy about my daily walk? Its sort of a contemplation time. I vary where I go. I am lucky enough to live near a bike path and some conservation land where I can watch the changing seasons. Sometimes I walk by myself and sometimes with friends. One walking buddy is a woman I worked with three years ago. We started walking at lunch a few times a week and now still meeting weekly to walk. These are now my big walks - 1.5 hours is our average and we take in the scenery around time. In nice weather, we look for nice gardens to see.

Now it turns out they have done studies on this. If you walk regularly you are less likely to get breast cancer or osteoporosis - oops, I guess that didn't work for me. But I hold out hope I can stave off dementia in the long run.

Anyway, today I am going to get the latest fashion accessory - a lymphedema compression sleeve to wear daily. It will be a lovely shade of medical beige designed (not) to coordinate with every outfit. Then I will go to work and for a walk, before working from home. Tonight is our highlight - we are going to meet the accountant to get our taxes done.

Wednesday, March 3, 2010

How's my stress level?

Well, honestly, its not very good. I had a discussion on this with my therapist yesterday. She suggests that I talk about my stress as it helps relieve it.

I am stressed a little still about my husband and the cat. However they both seem to be improving - the cat is developing a little gut from all the canned food he has eaten in the past few days. Trader Joe's tuna for cats, two cans a day. Oink.

I'm stressed about:

- lymphedema. It needs to be gotten under control and determined whether it can be controlled and what treatment I will need. Regardless, it never really goes away and I will have to be more careful for life.

- ankle. My ankle is not getting better. I am still working on it and will for a few more weeks but it seems clearer and clearer that surgery (or a life with a painful ankle) are my only options. But if I have surgery and am on crutches how does that impact my lymphedema arm? Just start there. Never mind probably six weeks in a cast and six weeks in a boot - which equals three months of impaired movement.

- back. Its always painful. The pain moves around. Pain is not fun. It causes all sorts of things like lack of sleep, crabbiness, depression, stress, etc. I am going for another injection next week but then the doctor isn't sure he has much more for me.

- ultrasound. I had a neck ultrasound a few weeks ago and the results were not that good. There is an area that is suspect and needs another follow up ultrasound in June. This was supposed to be a baseline test and would be clear. Well it wasn't. Now I am in that lovely wait and see mode. I am going to talk to my doctors in the meantime about this to see if the follow up should be moved up or not.

So my stress level? Rather high.

Tuesday, March 2, 2010

The leg bone is connected to the hip bone

I can't remember the rest of this but you know how it goes the back bone is connected to the hip bone, blah, blah, blah. Last week the lymphedema nurse told me I should consider getting ankle surgery to prevent falling. I started thinking about this. My ankle isn't really getting better. I might wait another month before calling instead of waiting until my appointment in May. No I don't want more surgery but it hurts generally all the time. I just ignore it and go about my life but pain sucks. And is draining. And is stressful.

However, I have to talk to the doctor again. If I have the surgery, I think it was six weeks in a cast and six weeks in a boot. If I am in a cast, I don't know if my back and lymphedema arm can deal with crutches so I need to find out if a walking cast is an option. Gee, that will be fun and be sure to make my back hurt.

In addition, I talked to my back doctor's office yesterday and will have another injection into my right SI joint next week. I was debating this and do think its needed. When I go for a walk, it hurts and generally aches for hours after. Then I get referred pain across my back as a result. But the pain I get now is a lot better than before where it felt like an ice pick in my SI joint when it was acting up.

Otherwise, I hope to get a lymphedema compression sleeve this week. A lovely fashion accessory in medical beige that will coordinate with my wardrobe.

Yesterday I took the cat to the vet and we will get his results today. Either he has this very obscure syndrome or he is a medical mystery. I just wish he wouldn't be such a picky eater and eat the food we give him so he stops losing weight. He lost another 1/2 lb in the past week.

I also got the joy of taking the car to the garage to see if I can get it to pass emissions inspection. Does it count as a 90K maintenance if you do it at 135K? I was thinking about it. According to the dealers records, I hadn't spent anything other than oil changes on the car for the past two years. The year before that I was busy in treatment so I know I didn't do anything to take care of my car either. So this week I get to pay for the equivalent of three years of maintenance in one week. Is this life returning to normal? I hope not.

Today I am going to work, for a walk, and then to my therapist to discuss my stress levels. Maybe I should skip going to her and ask her to read my blog and send me comments? Nah, I need the face to fact interaction.

Monday, March 1, 2010

Seeking optimism in books

I admit I am a life long book worm. I have been since I was a child sneaking a flashlight into bed to read after lights out. Nothing new there. I also married a book worm which means we go to bookstores and the library with regularity. And pay overdue fines. And get rid of books to the local used bookstore as well.

A few weeks ago I got a deal on a new Amex card through my Costco membership which has no annual fee and pays me cash back on purchases. I immediately ditched my old card with the rewards points. But being cheap, I wanted to use those old points and converted them into gift cards. Of course I went with Barnes & Noble so I could get a free bookstore trip. This gift card has been burning a hole in my pocket ever since. Finally yesterday I got there.

As I did my normal little route through the first floor and then through the second floor I realized I always take a trip through the health section and look for new books on cancer. This is new. Three years ago, I never went to the health section. Well maybe when no one was around, I would look for books on thyroid cancer. There never were any. Now I go look through all the books on the cancer shelves. Maybe there's a cure in one of them. When I go to the library, I always look through the new fiction books and then zip over to the new non-fiction and look for new cancer books as well.

Never mind that now a days books are considered to be behind the times and all their information out of date as the latest news is on the internet. I am still looking for that cure. Maybe someday there will be a book for me with that in it. I'll buy a million copies. Yesterday I ended up with two trashy novels and a book for my husband.