The end of 2009

Now that we are at the end of 2009, it is time to ponder an exciting year. Actually there is not much of 2009 that I would like to duplicate. I mean it was a year of back pain, doctor appointments, and all sorts of fun adventures. Yes, vacation in Maine was great but back pain wasn't so much fun.

I will have to think of what I would like to happen in 2010 but first I would like to eliminate stress, back pain, and cancer, and feline (or other) types of diabetes, and lose 20 lbs. In 2008, I had more than 70 doctor appointments. In 2009, I had way too many doctor appointments and I only wanted 12.

I also want world peace, the end of green house gases, and clean water for all but in the meantime, I'll settle for a yummy breakfast, ponder my options, and get back to you.

The anti-stress blog

I am taking the most mature attitude I can when it comes to stress these days. I am ignoring it. The biggest thing I am ignoring is the fact that my husband, who has never had surgery, is having part of his colon removed next Friday so we can find out where he is in the Stage I to IV thing... Hoping for stage I but we'll know after that. There is nothing I can do in the meantime, so I am ignoring this, some of the time.

While he is hospitalized, I will get another fun back injection, which should help relieve some of my pain, but may not, but then again it might - insert tiny optimism here. But the last one was awful and did absolutely no good at all.

My ankle is not getting high marks for healing. It has actually been giving me all kinds of aches and pains so I think that means back to the doctor again after an MRI.

I am ignoring the evil co-worker stress - no I am not trying to steal your job, we have realigned some things so its now part of my job, get over it and if you say we can't use the microwave since your department got a new one, we'll be happy to say you can't use our office refrigerator. Shut up and play nice!

In the meantime, my brother is coming to visit with two of his children (they will ignore all dust bunnies) which will be a big fun distraction. How to stay stressed while making brownies with a 7 year old or building blocks with a 5 year old?

The other patient in our house

Yes, there is a third patient in our house. The cat has diabetes. Today he is going to the vet for blood checks and a full physical (including shots). He hates the car. No, he doesn't hate the car, he is terrified of the car when it is moving. He is petrified. He turns into a shaking giant ball of fur. And he will be riding on my lap. Which means I will arrive covered in fur. This will be a very 'calm' event. but once that is behind us we can go about our day and retrieve him this afternoon for a repeat ride but slightly less fur covered because he always seems to know when he is going home. I have a list of doctor questions, a soft blanket to bring with us, and his lunch. (I am not kidding. He is probably the only cat who arrives at the vet with lunch. They look at me weird but feed him and report that he was starving for it. No he is not obese - he isn't even considered overweight any more.)

To recover from this ordeal, my husband and I are going out for breakfast at our favorite diner. Then I will do some work from home and meet a friend for a walk. A nice relaxing winter day.

I have made the executive decision that I am avoiding all thing stressful as much as possible in the next few weeks. I mean I live with back pain and seldom get a whole night's sleep (and was awake from 230am - 6am). Walter's surgery is next week which is providing enough stress for the two of us. The cat's vet visit is due to his lethargy recently where he slept through meals - and he is the feline garbage can who must be fed on time or early at all times. My ankle has been bothering me again. And then there are the evil co-workers who I am avoiding this week. I don't need any more stress thank you. I am doing just fine with what I have so far.

There are two sides to every argument

Okay, I read another article in the paper this morning (really someday I'll stop doing this) and it provides some good insight on teh two sides of the mammogram guidelines debate. It focuses on a woman who was part of the task force but who's family has a history of breast cancer. It does point out that everyone's cancer has their own story - cancer discovered by baseline mammograms at 40 that would be skipped if the guidelines were adopted. The whole science vs. fear discussion is blah, blah, blah, blah reiterated but it does conclude with a quote from the task force member that is really the whole point: ‘You really need to look at your personal needs and what you feel comfortable with - and what the evidence is saying.’

Anyway, so we are rounding out the holiday weekend and the cat doesn't seem to be his usual self. Yesterday he slept through dinner. This is a cat who is present for every possible meal and more. He slept from about 2 pm to 8 pm and didn't even flinch when I ran the can opener. Then he went back to bed. I am on hold with the vet right now to see if we can bring him in for a check up tomorrow morning.

Today we were going to do something exciting but there are pesky snow squalls due through here so we will have to find something a little closer to do. Otherwise, just another day with back pain....

Managing Up

I have always felt that part of doing your job right is to manage up. I used to work for a man with severe hearing problems, okay he was basically deaf. I would never go into his office and talk to him about issues. I would send him lots of emails and updates so he could understand what was going on and then discuss as needed. Talking just got him frustrated and cranky. I started a new job last May, I one of the things I made a point to do on my first day was to find out - where to leave information for my new boss (not on his messy desk, but on his chair) and how was the best way to communicate with him (stop by his office when he wasn't on the phone). This is managing up.

But this is a blog about medical crap, most of which is unfortunately my own crap, so this is about managing up with your doctors and other medical stuff. This article (I promise some day I will stop reading articles and critiquing them - right about when they find a cure for cancer) the other day covers it pretty well. Write stuff down, ask questions, find out what you need to know, and basically take charge. Don't wait for the magic healing fairy to flit through your life and fix everything, work with your doctors to find out. If your back hurts (like me) tell them when and why it hurts.

In addition to what is covered in the article, I would like to add a couple more.My primary care told me a few years ago, don't tell her about a pain, tell her the story about the pain. Keep track of when and why it hurts (sharp pains in my ankle on the treadmill for example instead of my ankle still hurts sometimes) and it makes her job easier to do and you get the benefit of quicker treatment.

Also, if you have any test - from blood taken to a scan or anything at all - the most important question to ask is when and how will I get the results. And if they don't get you the results, you can call and ask for them and find out what the results mean. Yesterday my husband got a blood test result in the mail as a follow up to his annual physical. The test was for his Vitamin D levels in his blood. He was actually just below the normal range but the doctor wrote on the printout 'Fine'. My husband's response was 'why is it fine if not in the normal range and what the heck is a Vitamin D test mean anyway?'

Managing up your doctors is key. (Managing up your spouse can be more important but that's another story...) Today is a rainy Sunday morning and after folding five loads of laundry, we are going out to brunch just because we want to.

The big decisions in medical care

There was an article in the New York Times the other day about the dilemma to provide more care to a patient who may never recover. Forget about the 'death panels' brought up by the opponents to the health care reform bill. This is not part of this discussion.

I have also wondered about this. When does a doctor or a patient say 'no more'? Every time I go in for surgery or a procedure, they ask if I have a living will (which I finally do) and I have discussed this with my husband and have my own thoughts on when I want treatment to end. But how does one make the decision? Is this a decision I will make on my own? Will a doctor make it? Will a doctor advise me? When does it become a case of throwing good money away?

The studies cited in the article show different sides of this issue. There is benefit to a point to keep on treating someone but how do you tell when its the wrong decision? And shouldn't the patient's wishes always be kept in the discussion and not ignored? This is the part where the living will comes into play. How's this for a nice morbid start for the day?

Anyway, we had a nice Christmas. And another dinner tonight. I think holidays are fattening.

Excuse me but it is still Christmas

Not that I am religious or anything but wouldn't it be nice to extend the holiday spirit into the holiday? The newspaper arrived fat with sale fliers for the post holiday clearance beginning tomorrow. My email was littered with clearance offers from various retailers. And I haven't even had breakfast and I feel like its over.

Well, we did have a nice evening of Chinese food and broke down and opened one gift each - actually I nagged until he agreed to one gift each. Then this morning we had stockings and gifts between us and what out of town relatives had sent. Now he is riding his bike and I am going for a walk and we will have more Christmas with my parents a little later and the more Christmas with my brother and his kids and my sister and her husband next week, which admittedly will expand into New Years. Its too early to end the holiday.

Now I did get some good gifts - like a new sports watch I really wanted to replace the one I had which no longer works. I didn't get the gift of a pain free back or a cancer free body but I'm working on those two. In the meantime, I am off for a walk so I can eat some healthy food later on. Merry Christmas everyone.

Twas the night before chemo

(Stolen from a friend and no I am not about to have chemo anytime soon.)

T'was the night before chemo, when all through the room
Not a patient was stirring, from Ativan I presume
The chemo bags were hung on IV poles with care
In hopes that a cure soon would be there
The patients were nestled all snug in their lounge chairs
Sipping Ensure and hugging Relay teddy bears
And the nurse in her scrubs and I in my wig
Had just settled down for another chemo gig
When out in the parking lot there arose such a clatter
I sprang from my chair to see what was the matter
Away to the window I flew like a flash
Tore open the blinds and threw up on the glass
Soothing my nausea with the fresh cool breeze
The wind took my wig and it flew with such ease
When what to my wondering eyes did I see?
Eight tiny nurses giggling with glee
Leading the pack was an oncologist so sweet
With a mission of cancer that they would beat
To help with side effects from chemo we blame
Was his arsenal of drugs that he shouted by name
"Now Xanax!, now Ativan!, now Zofran! and Compazine!
Let's offer comfort with bonbons and magazines
On Vicodin!, on Darvocet!, on Tylenol! And morphine!
Let's make them loopy and make a big scene!"
To the top of Mt. Courage, to the top of Mt. Hope
Now dash away, dash away so we can help cope
With tumors and lesions and lumps it is clear
We must make their cancer finally disappear!
So up to the clinic-top, they flew and flew
With a sleigh full of drugs and the doctor too
Then with a jingling I heard from their purse
Was the prancing and pawing of each little nurse
As I drew in my head and was turning around
In through the vent the doctor came with a bound
His eyes how they twinkled - his dimples so merry
His cheeks were like roses, his nose like a cherry
He was dressed all in white with an ugly plaid tie
He preached to the patients, "Do not ask why"
Have courage, choose hope and just think positive
Live, love and laugh and your life will be lucrative
Never forget that you are heroes in my book
Conquering cancer without a second look
With a wink of his eye and a twist of his head
He soon let me know I had nothing to dread
A bundle of drugs he had flung on his back
He looked like a drug dealer opening his pack
He spoke not a word but went straight to work
Making me feel sick, so I called him a jerk
A human pin cushion, I had become
So multiple pokes, again I succumb
But then I remembered, my life he was saving
So I realized I better start really behaving
"What comes around goes around" I always say
And a bad attitude might haunt me one day
I thanked him for fighting with me side by side
With two against one, cancer cannot hide
Then laying his finger aside of his nose
And giving a nod, up the vent he rose
He sprang to his sleigh, gave the nurses a sign
To travel the world fighting cancer like mine
The sleigh was our hope and he was the driver
Bringing strength and good cheer to every survivor
I heard him exclaim as he flew out of sight
Happy Holidays to all and to all a good night!
~Heather Warrick

Another 'big cancer story'

Here we go with another big cancer story. Teresa Heinz, Senator Kerry's wife, has announced she has breast cancer. I appreciate the way she has announced it and her reactions, with that of health care professionals, on the new 'guidelines by the morons'. I am sorry to hear another woman has to go through this.

But I think there is a bit too much in the press in terms of details of her treatment. Do we need to know she had two sets of lumpectomies and the details of her radiation treatment? I am not sure. I don't know if she announced these details or some nosy reporter pried the information out of her, her representative, or bribed someone at the hospital. I think its a level of detail that is more than anyone other than my husband and doctors know about what I had. Isn't there any privacy left?

I realize that some people feel the need to talk about their entire treatment for a disease as it is a way of dealing with the emotions behind a diagnosis. But there are somethings I don't need to know about. I don't know Ms. Heinz and don't know her thoughts and rationale behind this but this is my reaction to the news this morning. I called this a 'big cancer story' because it is one I am sure that will be blown out of proportion by the media, make its round of the news show circuit, and never be left to rest.

However, if she can use her medical story to help with getting rid of the moronic guidelines, more power to her. I am glad she made such a statement to the Associated Press.

In the meantime, maybe you can call me cranky because I slept so well last night. I didn't fall asleep until at least 11 and was up at 130, 230, and 430. Maybe I should just hide under a rock today instead of being crabby to others.

Well, hurry up!

I heard about the breakthrough in decoding the cancer genetics and watched the video. The short answer is they are on the right track but they aren't there yet. They can now say that cell mutations cause cancer and have decoded the skin and lung cancer ones and this should lead to more targeted therapies. But, they still don't have answers as to what and why and can't explain why some people who never smoke get lung cancer and things like that. So big step in the right direction on the 1,000,000 mile highway to figure it all out.

But another day in my life means back pain, not getting enough sleep, and stress. Just over two weeks until my husband's surgery. Three weeks until my injection to help my back pain. I'm not very inspired these days. Sorry.

Who are these people?

Basically I don't know. Through blogging, I have 'met' a lot of people. I follow blogs. Some people (not sure why) follow my blog. I hear about others ups and downs but will I ever meet them face to face? Probably not. They live all over the world. But its a nice comforting thought to know there are people out there I care about who care about me.

Three articles that tick me off

Let's start with preying on the emotions of cancer patients to make them think they are getting better care or potential for a longer life. This is called bias, and skewing, and just wrong. There is nothing wrong in the advertising world with saying things like this new car goes zero to sixty in less time than another which can be proved by fact. But its another to allow an by one organization to be wrong because it would be misleading but if by another organization its not misleading, but considered acceptable. Gee, take people with a bad health diagnosis and mislead them so they spend the last of their money on cures that are nothing better than snake oil.

This one shouldn't be an eyeopening read. It should make sense. Generic drugs are very similar but not the same as non-generics. Generic drugs are great. They prevent monopolies by drug companies and create competition. But they are not the same. For example, tell ten bakers to bake a loaf of bread using the same ingredients and same recipe. Will they come out exactly the same? No. The same thing applies with drug manufacturing. This is all well and good but if a patient doesn't react the same way to a generic the name brand one should be allowed or they should be able to switch to a different generic. I have been on synthetic thyroid meds for 28+ years and have been told that the generic is fine but not to switch around alot from one manufacturer to another.

Finally I read this article on working at Walmart and all I could think of was Jim Jones and Kool-Aid. Or those pictures from 1970's Japan of companies doing group calisthenics while dressed the same.... Or communist era armies marching in synch.

I have learned about a new kind of cancer

First I learned all about thyroid cancer (6 pages in a book) and then all about breast cancer (60 books plus 6000 web pages) and then I relearned about thyroid cancer (because I felt I knew nothing compared to what I knew about breast cancer) so now I have learned about colon cancer. I think I choose not to have to learn about any more kinds of cancer in my life time.

Anyway, this is what I have learned - but I'm no professional here so don't quote me. About 100,000 Americans are diagnosed with colon cancer each year, this compares with 200,000 women with breast cancer or 30,000 men and women with thyroid cancer. Colon cancer is the fourth most common cancer in the US but the third most deadly for men - right up there with lung and prostate.

Colon cancer is staged by where it is. If it has progressed out of the polyp, they can't tell the stage until they do the surgery. If its in the polyp only, stage 0 and considered cured through a colonoscopy. If its in the inner layers of the colon, its stage I and considered cured through surgery. If its further into the layers of the colon, it is stage II and it is considered cured through surgery. If it is to the outer layers of the colon and into lymph nodes, it is considered stage III and requires surgery and chemo. If it is into other organs, it is stage IV and they do surgery as much as they can and give you chemo.

The five year survival statistics for colon cancer are actually worse than those of breast cancer or thyroid cancer:
Breast cancer: Stage 0 100%, stage I 100%, stage II 86%, stage III 57%; stage IV 20%
Thyroid cancer: Stage I - 100%, Stage II 100%, Stage III 96%, Stage IV - 45%;
Colon cancer: stage I 93%, stage IIA 85%, Stage IIB 72%, Stage IIIa 83%, Stage IIIB 64%, Stage IIIC 44%, and stage IV 8%.

Any more happy thoughts and I might explode.

Feeling enlightened but not ready

Yesterday we spent several quality hours at the doctor. First Walter got to stand in line to be given a special 'purple card' so that he could go to the physicians office and get checked out before coming back down to the same office where we would be seen. I am sure there was logic there but I missed it. I also did lots of benchwarming - 'oh look there's two seats together, I'll go grab them' instead of standing in line.

First we met with the surgeon's physician's assistant who gave us the surgical consent, the pre-op prep, the bad news that he will have a catheter for several days, and the over view of the schedule. Arrive 1.5 hours before surgery, 3+ hours for surgery, 1-2 hours for post op and then into a room where I can see him.

Then we went back down and exchanged the purple card for an orange card and got to sit in another waiting room. Then we met with an anesthesiologist nurse who did all sorts of poking and prodding and answered more questions - currently we are scheduled for the first thing in the morning surgery which means be there by 6 am which is exactly what we wanted.

The interesting part of all this is if it was me, I would have answered all the questions differently (any previous surgeries or hospital stays, medical allergies, etc). He has never had surgery or been hospitalized. The only sedation given was for his colonoscopy and endoscopy last year. I don't know being on the other side of the caregiver/patient role is a little freaky.

Both people we met with were careful to say that if only in the section of colon they remove, this would be considered a curative surgery. But there lies the 'if' that is unknown until the pathology report which is about a week after surgery. Grrr!

We came home and in some ways I felt better about the whole thing and in others my stress level grew significantly. Triple grr!

A newsflash: Behaviors Linked to Cancer

Here's a newsflash - what you do can cause cancer in your body! How astounding! Behaviors Linked to Cancer If you smoke cigarettes or sit in the sun, your cells can show DNA changes which can lead to cancer. So this is the reason I was in the lucky crowd? Well, that's the kicker, they don't know. They can now prove that behaviors cause DNA changes that can turn cells into cancer. But they still don't know why some people get cancer and others don't even though they follow the same behaviors. I'm sure in another 40 years of the war on cancer, they'll have figured out more.

In the meantime, this morning I am up early to go to work and then leaving at noon so Walter and I can go spend some quality time at the hospital today and go through all the preop stuff. This means, I keep my big fat mouth shut and let him deal with everything. When I go for surgery now, I tell them, I want this anesthesia, I want mornings, I want, I want, I want. I've been through it. He hasn't. He has to ask all the questions he needs and I'll sit there quietly and right down the answers to his questions.

Actually he is surprisingly unstressed. I am stressed enough for the two of us. Grrr!

Quick, I want a CT scan

Being a news junkie I have been following the news again. And now never want to have another CT scan. First watch this video on how CT scans give off a lot of radiation and are believed to cause cancers. Then watch this video about the poor man who was given too much radiation in a brain scan.

I never want another CT scan. If I ever have a desire to want one. I'll go back and watch these again. How many CT scans have I had? Three abdominal ones and several breast ones during radiation. I think that's it. But now am I causing more cancer but doing this? But then when the doctor orders one, I'll have a little discussion.

But here's a thought, I have several friends who regularly have CT scans to see if their cancers are responding to treatment or spreading. That says something about their long term prognosis if the radiation's long term affects are not a consideration.

Too much too early in the day. I am lying in bed with my laptop getting ready for my day. I do need to take a shower pretty soon but I am procrastinating - its cold outside and I don't wanna!

I am not alone!

Yippee! It turns out that cancer people are more likely to worry about the side effects of pills and treatments than the benefits. You hear us all muttering to ourselves but if its a 30% risk reduction that comes with an increased 5% risk of leukemia and you are starting at 15% risk of further cancer, why should I do chemo? Or if I take Tamoxifen it reduces my risk of breast cancer recurrence by 50% but then an increased risk of uterine cancer, clots and all sorts of fun things. Yes, no, yes, no, maybe, not another pill, damn it all.

After treatment I think we are all so sick of pills and want to be back to normal that the idea of more pills just drives us crazy. And since it was in the New York Times we know this must be true.

So I am not alone in my moronic, circular, Caroline logic that my husband doesn't understand. I am sick of pills. I would prefer to take none.

Anyway, the stress is getting to the two of us here. And it doesn't help that our lovely cat has decided that he should distribute his toys around the living room every night and run around psychotically to trip us. Last evening we also learned that if we are both going to cook, we need to do so silently and not 'help' the other.

This morning I am off to work and then to see my therapist. Another fun day in my life.

More pills, less pills

My goal (and I need to have goals) is to reduce the number of pills I actually take. Currently I take a total of five daily prescriptions and have another four for when I want them. Plus I take over the counter antacids and a lot of vitamins. I am on a mission to reduce the number of pills I take. Just reading all the potential side effects alone has me wanting to cut back.

I have cut back on the doses on two of my daily prescriptions so far. But not the number of pills. There is no hope that I can cut out synthroid ever. But only 3 more years of tamoxifen or a switch to an aromatase inhibitor. I wouldn't mind getting off of the anti inflammatories and back pain medication but that is only a hope for now - I have to see how the next few months go. My anti depressant should go away some time but not for a while.

I did attempt to reduce the number of vitamins and got rid of a few but have to keep the calcium and vitamin D and multi vitamin. I tried getting rid of the antacid but the anti inflammatories are nasty on my stomach so I have to keep that one. I would love to recycle all my pill boxes.

But anyway its Monday morning and its winter but I am off to the post office first thing and then meeting a friend for coffee and another friend for a walk and then go to work. But our holiday cards are now done. Holiday shopping is now done. Now I can enjoy the holiday.

Time for an update

Yes a blog about me has to be about me as opposed to me whining or ranting or complaining or something. So in the world of back pain, my back likes me these days. I can't wait for more treatment to get rid of more of the pain but it seems to have settled into something liveable. My ankle is slooooowly progressing. I have to wait another month and see how it goes and then maybe and MRI and more fun things but right now we are also in a holding/healing pattern. All my blood work came back normal recently, which is a nice thing.

For the rest of December, I see only the mental health professionals who keep me from falling apart at the seams. Then in January the whole line up of doctors begins again: back doctor for treatment, endocrinologist, ankle doctor and radiation oncologist. I know I have more appointments after that but that's too far out to think about it...

As my health improves, I am working more. I have added hours at one job and doing more projects elsewhere. While it is not really full time it is close enough and allows me to earn money, get exercise, and feel like I have a life.

So where do I want to go from here? Or should I say what do I want to do with the rest of my life? I just ignore that silly adage or whatever it is where people say about themselves 'at least I got my health' since my health isn't really there. But what do I want to do? I do want to volunteer more and contribute more to the world of cancer people out there. Perhaps some advocacy, I don't know yet but I'm thinking.

More cancer

Its not my cancer this time, its my husband's. He had a cancerous polyp at his colonoscopy and now will have surgery in January. In technical terms, they didn't get clean margins when they removed the polyp so they don't know if they got it all. They could have but it was mangled when they took it out so they can't tell. They do know he had a 3 cm polyp with cancer in it and the cancer was going down the stem of the polyp and we don't know if it got to the colon wall and potentially anywhere else.

This means the following:

- The cancer roller coaster is back. I am not sure its any easier from the caregiver side as opposed to the patient side.

- All we both want for Christmas is a clean pathology report.

- Stress sucks.

On wine and soy

There is much in the news this morning. First of all, drinking wine increases your risk of breast cancer return. Well, obviously that's the case because its something enjoyable and cancer robs you of everything fun in life and you should live in a cave, eat vegetables, take your pills, exercise regularly, and visit your oncologist all the time. If it isn't fun, you can do it.

Further proof lies here where they are now saying soy is good for breast cancer survivors, which is a complete u-turn from what they used to say. If you eat your tofu (ick!) and live in a cave, eat vegetables, take your pills, exercise regularly, and visit your oncologist all the time, you will be fine. But I am not sold on this soy thing just yet. In the past, as the article says, if you had estrogen positive breast cancer you were told to avoid soy because (here's my medical knowledge kicking in) something in the soy mimics estrogen and feeds the cancer.

There have been studies all over on this and I personally am not sold either way. But I do know I have tried soy yogurt once and it was elmer's glue flavored, personally can't stand tofu, and think just the thought soy milk is weird (milk from seeds, go think about that one - maybe it soy juice) and can happily live without. I wouldn't mind an order of edamame every once in a while but that's about it. This is just the latest news and I'm not changign anything yet. If a study comes out that says a daily dose of tofu will cure cancer, I will start eating it (while holding my nose) but not much else will make me change.

Back doctor update

Yes I did go to the back doctor on Tuesday. Of course, my back which was horribly painful for days last week to the point that I was walking crookedly and everything decided not to be painful the day I show up at the doctor. Actually its been pretty cooperative the past two days even though I have done my best to over exert it.

The doctor did his usual 'Does this hurt? Does this hurt? Does this hurt?' exam followed by my responses of ow, ow!, OW! I said I didn't like being on Lyrica because it made me fat, it seems to have stopped working twice, and I haven't been sleeping at night. That surprised him. Apparently everyone (but me) who takes lyrica, sleeps like a log at night. I was sleeping every night until they doubled my dose and then I stopped. He then suggested going back down to the lower dose to see if I could sleep at night again and to see how pain levels were. He wasn't concerned about the getting fat side effect as he said that should go away. Can you please define that statement for me? Will my flab just evaporate or will the increasing trend on my waist line just stabilize at a certain level? He also said that I need to be doing my share and get some exercise where I told him I do get some exercise 5 days/week and I do my back exercises from PT.

Now he also feels that the right sacroiliac joint is inflamed - hmmm I could have said that a year ago but I didn't know what an SI joint was or inflammation felt like. He is going to stick a big fat needle into it and inject a steroid and some lubricant. However that can't be until January because of the holidays. But what's one more month of pain?

So, I get a big needle and then what? The answer is we aren't sure. Let's see what happens. Do doctors give definitive answers any more? I don't think so. I also did get the results of all my blood work yesterday from my oncologist and everything looks fine. More positive news but then why do I feel like absolute crap sometimes? Let's just put it down to old age and go on from there.

Now some how this morning my husband has the idea that I am cooking breakfast for him. I am not sure how this happened but since I have to cook breakfast for me too, its not that big a deal but what is a big deal is that I need to get my butt in gear to get out the door at a reasonable time.

Baring it all

Over the years, I have collected my share of surgical scars - there were the ones that everyone could see and I didn't really care, like knee surgery, or the ones that were so old, like thyroid cancer, no one could see them, and then breast cancer surgery made all sorts of fun scars. Like a giant port scar on my chest (which they cut into twice just to make sure it really shows) for insertion and removal and the one where they took out lymph nodes by my arm pit (that they also cut into twice so it really shows) once for sentinel node and once for axillary node to make sure there were no more cancer cooties. Then there is the lumpectomy scar, and the other lumpectomy scar, and the third lumpectomy scar which are usually covered at all times but receive radiation so they really show. Finally, there are the connect the dots on my abdomen from my hysterectomy and my four incisions for my gall bladder-ectomy (there is a fancy word and its something like choleo-blah-blah-blah that I can't remember).

In the midst of all these surgical fun and games, I stopped getting changed at the gym at those few intervals when I actually went. I didn't want everyone to see my scars. I was very careful not to let anyone see anything that might scream out 'SHE'S A CANCER PATIENT' so I made sure I remained clothed. Swimming in public is not an option really these days for similar reasons. There is also a minor flabbiness issue I prefer not to expose either.

So Monday night I had a brilliant idea and I said to my husband 'I'm going to get up tomorrow morning and go to the gym at 6 am'. Well this was a great idea at 8 pm but not at 6 am so, big surprise, it didn't happen. But I was concerned that if I didn't make it to the gym in the morning and my schedule wouldn't allow me to go on Wednesday so that would mean two consecutive days of sitting on my butt and increasing my flabbiness quotient.

Then I got a brainstorm, why don't I leave work a little early and go to the gym on my way home before my hair cut. So I put together my bag of clothes and went off to work. I left work on time, didn't get stuck in traffic, and even got a decent parking space at the gym. I went into the locker room to get changed, which was moderately full, and as I was half dressed, I remembered my connect the dots scar issues. I thought 'what if someone sees my scars????' so I resorted to the really mature 'get-dressed-as-fast-as-you-can-and-pretend-no-one-saw-a-thing'. I always believe in pretending things didn't happen and they don't matter. I know its not mature but it works for me. And honestly, was anyone even looking?

Now today, I made an executive decision. It is snowing now and supposed to snow hard for the next hour or two which will royally mess up the scheduled commute. But wait, I work two part time jobs for a reason. I'm not going to work this morning, I'll go tomorrow instead. I'm so glad I thought of that.

I'm going to lie around the house this morning, go run a few errands once it stops snowing and switches to rain, go to the gym (but get changed at home), and then go to work in the afternoon at the other job. I'm so smart sometimes it kills me.

Some good cancer news?

The latest report is out on the fact that cancer deaths are declining overall. Well isn't that special? We've been 'fighting the war on cancer' for 40 years and now deaths are declining. I think its about time. Or this is my cynical evil twin speaking, 'what took so damn long?'

Anyway, there are two parts to this pile of information: diagnosis rates and mortality (the fancy word for death - go see this article for comments on that word) rates. Diagnosis rates have gone down 1% per year from 1999-2006. This is important it means people have cleaned up their life enough so they don't get cancer. But diagnosis rates are up for kidney and liver cancers in both sexes and thyroid, pancreas and bladder for women. Thyroid cancer is incresasing in incidence. When I had it there were about 10,000 cases nationally. Now there are over 30,000 cases nationally. So I am not sure we are winning any fights there.

The death rates have also gone down for the most common cancers: lung, prostate and colorectal cancers in men and breast and colorectal in women. Advances in treatment and earlier detection are said to be the cause for this. (And those 'idiots' said to skip mammograms - obviously this report was before their solid advice.)

Enough rambling for me today. Go read the article yourself if you feel inclined to be educated. I have to get my butt in gear and get to the doctor to discuss my pain issues. You know the ones I whine about from time to time. I want a new plan. I want action. I want to feel like a new me. I will be assertive. I will write his damn script - 'cortisone shots, PT, fractal block, upper back diagnosis, and replace lyrica with something else'. There, that's all I want. No I want a cancer free, size 8 body... but wait that's a different doctor.

Hoping for an adventure free day

Sometimes I think my (lack of) brain will get the best of me. Yesterday as part of my on going effort to become a healthy person - and yes apparently this will take a lot of work - I woke up and decided that since the streets were covered with snow that I should go to the gym. I asked my husband about his shoveling time table and was informed that perhaps I should just walk to the gym instead of forcing him to clean off the cars sooner so I could drive there. (In other words, stop nagging and go away.) So I took the subtle hint and threw on my gym shorts and a tshirt, a pair of sweats over them. I put my necessary gym supplies in a little tote bag - magazines, water bottle, etc. Then I put on my boots and coat and walked out the door where I made an immediate u-turn back inside to get another layer of fleece under my coat.

I walked the entire 0.1 mile to the gym (you wonder why I don't drive more often but there is a hill involved as well) and it was closed. Whoever was supposed to open with keys failed to show up and there were people milling around the parking lot. One woman said she called the owners and it would probably be another hour before they opened. I looked at the bright blue sky and new fallen snow and said I'm out here so I'll go for a walk instead. I opted for walking up the bike path and into the conservation land where I usually walk. I knew it would alternate between muddy and snowy but I was wearing my boots and wasn't concerned.

I walk up the bike bath, across the field, along the reservoir, admiring the tree branches bent over under the weight of the new snow against the blue sky. I left the reservoir and walked up over a tiny hill and waved to the man shoveling his driveway, and slipped on the ice at the end of said driveway, landing on my fat butt (lots of padding there). I was unharmed, allow me to repeat: I didn't hurt my stupid back. I got up, felt like an idiot, and kept going. This was at the farthest point of my walk anyway so there wasn't much difference between going further and going back. Only woosies turn around anyway.

I cut over a couple blocks and went into the other conservation land. It was so pretty - and of course I did not have my camera as I was merely going to the gym - which meant I also didn't have a hat or mittens either or a cell phone. I decided I wanted to drink some water and reached into my bag and found out a repeat of a previous situation where my water bottle, at the impact of my butt on the ice, had opened up and I was carrying around a waterproof bag full of water and wet magazines. I dumped the water out of my bag and kept going. I also had no snacks and this was before breakfast. And there was no one else out yet because it was early and the rest of the world was home shoveling snow.

I went a little further and admired the new snow and lack of foot prints. The snow from the branches overhead kept falling on me, on my head, coat, and down into my boots so my socks were getting wet. Finally I was getting back near the bike path and the final stretch before home and realized that it was a good thing I hadn't gone to the gym because I had forgotten my sneakers. And if I had my sneakers they would have been soaking wet! I have no brain.

This morning I am going to the gym where it is warm - its 23 degrees out. I will bring a different water bottle, a different pile of magazines (that are dry), and double check to make sure I have my sneakers. And I will put a bandaid on the blister I got yesterday.

Its official: Chemo brain is contagious

Yesterday I was out with a bunch of friend and we were talking about how we forget things. One of them said 'I'm getting Caroline's chemo brain'. But the real question is how much is chemo brain and how much is normal stressors and how much is normal aging vs. how much is left over chemo brain? Hmmm... No real way to tell but we'll take it instead of a sign of getting old or something.

Four of us got together to celebrate a friend's birthday. Three of us conspired to get a birthday cake and have it after we went out for lunch (I had the ploughman's plate with home made branston pickle if you must know). I got the cake from a local bakery - it was perfect with little purple violets and a Happy Birthday message on top - and carefully put it on the floor of the car and drove carefully. I spoke with the birthday girl on the way and realized I would get there before her so I could smuggle in the cake. The cake and I arrived safely and I reached over to pick it up and it slipped out of my hand and flipped over LANDING UPSIDE DOWN on the floor of the car. I righted it and grabbed it and ran in where my other friend performed cake CPR. It wasn't perfect but it came out pretty good in the end. Now was this chemo brain in action or just stupidity?

It was also another day of back pain - now there's a surprise. My back is being surprisingly uncooperative these days. I have notes and lists to take with me to the doctor on Tuesday. In the meantime, I have lots of drugs. Now turning to substance abuse? No. I take my pills as directed. But sometimes I admit to sitting there trying to figure out how long until I can take more.

Last weekend we did get a new memory foam mattress topper. Walter remarked this morning how he has been sleeping really well with it. I think the cat likes it too because he now sleeps with us every night. And takes day time naps on it. On the other hand, my back has been very uncooperative these last few days. Is it due to the mattress topper? I hope not. I was actually thinking that the mattress topper was helping earlier in the week. I probably did something stupid (like stood up for too long) that caused this current bout.

At any rate, the problem is now that I can't do lots of things these days because of my back. For example, today we were going to go for a walk and then meet friends for brunch and then have my parents over for dinner. I think we will not meet friends just so that I can actually spend a few hours sitting around doing a fat (that's me these days) lot of nothing and relax for a while. Two more days until the doctor performs his magic. Grr, grr, grr.

In the meantime, I am getting concerned about kitty. He is back to the demanding food and water all the time which are bad signs for diabetic cats. His right eye seems to be very cloudy and I think he has problems seeing out of it. He drools which makes me think teeth problems. Both eyes seem to be seeping. And he's losing weight even though he is eating all the time. I think I'll call the vet tomorrow and get him back in for a check up. More medical magic.

Guess what?

My back hurts. How's that for news for the day? Okay. Its not my back that hurts. Its my back, neck, both hips, and SI joints. Can I whine about this again? For a change? I feel the need to these days. I go back on Tuesday to see the back pain doctor so I can whine between now and then. Now there are side benefits to back pain. I can't lift anything over 20 lbs. That means I can't shovel snow and its supposed to snow tonight. So, while my husband is out shoveling should I? a) make him a cup of herbal tea to warm up when he comes in, b) lie on the couch and watch cooking shows and ask him to bring me tea when he comes back in, or c) go clean off the cars to be helpful? Hmmm... I'm thinking.

Isn't this supposed to be a blog about breast cancer and dealing with it? I haven't decided if back pain issues are compounded by cancer treatment or if this would have happened anyway. Doctors don't know this stuff. They tell you concrete things like 'there have been no tests to prove this'. So maybe I am just a lucky one again.

Not to change the subject but perhaps I am overscheduled again today or actually this whole weekend. Here is my weekend: walk this morning, pick up farm share and other errands this morning, leave here at 12 to meet friends for lunch, return home by 3 to change and get ready to go to ceremony for some award Walter is getting this afternoon, return home around 6. Tomorrow walk in morning, lunch with friend's, clean house, parents over for dinner. Also, do laundry, clean litterbox (Walter's job), and relax. Aren't weekends for relaxing? Let's see if my back holds up.

Living with pain

I was reading some older Dana Jennings columns - he is a columnist on health and cancer with the New York Times. He wrote about living with and enduring pain. Until you get to live with pain, its difficult to understand what someone is going through. There was always someone with a bad back, injury, or something that caused pain. You would assume they were being treated and dealing with it. But now its me. I have all sorts of pain meds and they aren't helping much. Next week I go back to the pain doctor to see what he has up his sleeve - and I hope its a lot. My spine is like a red hot poker of pain running up and down my back. My lower back is a big aching mess. I will take my pills and put on the big pain patches and suck it up until Tuesday.

H1N1 adventures

I have never been a huge fan of flu shots but then after chemo, I was told I should get them. I have also pondered the H1N1 option. I work part time in a high school (a/k/a germ factory) and I work part time in another office. My husband works in a third office. So germs galore. I got a seasonal flu shot a few weeks ago at the hospital's clinic. I have also heard the stories of people waiting in line for hours for H1N1 shots. I can't stand in line for hours (without whimpering in pain) so I have been patient and waiting until they are more available and no big lines and perhaps beg from one of my doctors when I see them.

From what I have heard of H1N1 (couldn't they pick an easier name? Shift, h, release shift, 1, shift, n, release shift, 1 is a PITA to type. Swine sounds so slimy too) flu it includes all kinds of nastiness - fever, aches, nausea, vomiting, all the unenjoyable things in life that I can really live without. I do want to avoid it and with my medical history blah, blah, blah, blah, blah, blah, I should get the shot.

Yesterday I got to work about 115 pm at the high school. A co-worker went down the hall to run an errand and came back to report that they had set up an H1N1 clinic and didn't I want to get a shot? No line so yes indeedy I wanted one. I went down and the two somewhat uninformed ladies at the desk told me yes I was eligible if I wanted one and worked at the school. Just fill out the form and go down the hall. I filled out the form (no allergies to eggs, had flu shots before, etc) and went down the hall.

The next table of two ladies told me students only so I wasn't eligible but if I had health issues perhaps the nurse could clarify when I could expect to be able to get a shot. The nurse said no, not today, students only but maybe the director of health could tell me when the shots would be available. I tore up my form as I walked with the nurse to see the director of health and threw it in the trash. He said 'oh, they just opened it up to everyone who wants it'. So I filled out another form and went back down to see the second set of ladies again who said no again and we went through the whole thing again but the health director came over and clarified (I love bureaucracy when they communicate well).

Finally, I get my shot and was told I have to sit in the back of the room for 5-10 minutes. Apparently this is the case to make sure no one gets dizzy and passes out. I will confess that in sitting there for 5 minutes I felt a tiny bit of dizziness that went away so I left and went back to work at five of 2. By that time, there were several employees getting their flu shots.

Later, the janitor reported to me that shortly after 2 pm the line was approximately 45 minutes long. As I left at 530 pm, there were hundreds of people in line. Lucky me sneaked in at the beginning. And so far I feel fine, no reaction, no more dizziness so today is just another day - go to the gym (because of downpours), work late, and then home.

I could have written this

Another great organization is Living Beyond Breast Cancer. It has lots of resources and provides quarterly newsletters about the latest news and information for post treatment breast cancer people. I got my newest newsletter yesterday which headlines with "Writing your way through Breast Cancer". Well, doh, I could have written this.

I started my blog as a way to inform people of how I was doing through treatment, etc. It was my way of controlling the information. It has been very helpful to me. But I am not alone. Google 'cancer blog' and you will find thousands. Everyone needs to do what they need to do to get through this lovely thing called life with cancer. Some people create or join causes and fund raise and speak at events. Some people turn into advocates. Some people, like me, babble on and on to readers, like you, who for some reason actually read this stuff. Anyway, my point (I need to have a point) is that I could have written this article for them if they had asked because it has been very helpful to me. And they get a special thank you for saying that punctuation and grammar don't count.

Now there was a disturbing news story this morning. High risk women may actually be increasing their risk of getting breast cancer if they had regular mammograms before age 30. I was high risk because of this pesky thyroid cancer thingy at 19 and then a benign breast lump at 23 and have had regular mammograms since then. Did this cause my cancer? Well, since they use the word 'may' in the title and they still haven't figured out this cancer thing, I am not going to sweat it and start blaming things which are in the past and can't be undone.

Enough about that. Today it is cold but I will be brave (and not whine) and go for the outdoor walk with a friend before going to work for the afternoon. Then I have a meeting and will be home late.

A nasty anniversary

Saturday was a nasty anniversary. If you read my blog last year you will know that my back started hurting on the evening of November 28, 2008. Gee, how times have changed. it used to only hurt once in a while, now it hurts basically all the time. How medical work has progressed. I can be a cynic once in a while.

Anyway, we had complete and utter failure of the kitty alarm clock this morning and we overslept by an hour. How come he can wake us up on our days off at 430 am but when we need to both get up, he decides to sleep late?

Now I am late for work. I will go contemplate my nasty anniversary and probably get to sit in traffic. Bye.