Tuesday, November 30, 2010

But I don't play tennis

I have tennis elbow. The last time I recall I played tennis was when I was 9 years old and we spent a month or so on Cape Cod in a rented house that had a tennis court nearby. My mother attempted to teach us how to play. I was awful. I don't play. Maybe I have delayed onset tennis elbow but that would be really delayed onset (even though I am only 29).

So I went to the doctor yesterday but first I had an x-ray. When I finally got to see the doctor, I was asked what my pain scale was - I said about a 5 or 6. The doctor said I had a perfectly normal elbow and by pushing on the sorest parts of my elbow he told me I had tennis elbow - which he used a big fancy name for that I can't even remember and added that it is a repetitive strain injury. He suggested that I do behavior modifications like switch my mouse to my left hand - I did that 15 years ago due to my ulnar tunnel issues so I had that one covered.

In addition, he said that treatment options were a cortisone shot, physical therapy, and a brace to wear at night. I said I would take all of the above. He injected my elbow at its sorest point with a 'tiny' needle (that wouldn't hurt any more than a flu shot - liar!) and rubbed it all around to make sure the cortisone went everywhere.

He gave me a very stylish brace to wear at night but put it on me to show me how to wrap the velcro straps in case I have very severe chemobrain. Then he wrote out a prescription for physical therapy but told me I would have to go to an outside PT facility for the treatment. I wasn't too sure I would like that but then it turns out the only facility for this is the one that is (I'm not making this up) three blocks from my house. I can walk there slowly in under five minutes. My first appointment is Thursday morning.

Upon leaving the hospital I kept the lovely wrist brace on and went to pick up the snowblower that was out for repair. The men in the repair shop took one look at my wrist brace and said 'can we put this in your car for you?' Now that is a very useful brace.

Then the bad part of my day started. I met a friend for a walk and my arm got progressively sorer. I went to meet my boss and check out a conference location and it got even sorer. Finally I got home in a lot of pain, took a pill, and asked my husband to make dinner. It was sore enough that if the cat rubbed on my fingers the wrong way, I was off the charts in pain.

Apparently, after several dozen cortisone shots in my back and hips, I have experienced the most common side effect - the cortisone flare. Who knew? But some website knew and I quote 'the most common side-effect is a 'cortisone flare,' a condition where the injected cortisone crystallizes and can cause a brief period of pain worse than before the shot.' A brief period has lasted most of the night. I iced it as instructed, took drugs and pouted.

Today it is somewhat better. I have been awake since 1 am. I even got out of bed to look for my night time wrist brace which I conveniently left in my car.

However, today I can move my arm, wiggle my fingers, feed the cat, pour myself a up of coffee and am optimistic that I will be able to go to work and be semi functionable.

On the plus side, its not cancer, it should go away in 4-6 weeks, I can flash my wrist brace for help with things I don't feel like doing, and my husband cooked dinner.

Monday, November 29, 2010

Wanted: One general, all purpose doctor

I was talking with a friend yesterday about life with ailments and how we seem to spend all our time running from one specialist to another. We both want a general all purpose doctor who is a combination ankle surgeon/elbow surgeon/medical oncologist/breast surgeon/radiation oncologist/radiologist/primary care/psychiatrist/psychologist/and whatever else you need. You go see them and they say pouf and you are all healed. None of this wasted time going from appointment to appointment. Wouldn't that be great?

Or better yet, a single cure for everything so we wouldn't need the doctors in the first place. It never hurts to dream does it?

Today I am going to break in a rookie. A rookie doctor that is. He has never met met before so I go in and say 'my elbow hurts, I've been icing it which helps a little but I am already on an anti inflammatory and multiple pain medications and can we talk about the rest of my medical history as well and then you can tell me how soon you can make my elbow better. Okay? Thanks.'

He's a young doctor. In his picture, he looks younger than some of the clothes I own. These young doctors always seem to want to know my complete medical history. I can only remember it if I go chronologically counting the arrival of each surgical scar. Then I scrape them off the floor and start talking about the non surgical issues. Then they excuse themselves to go read my chart a little more. Then they come back and say 'wow' and give me some solutions.

If I had one all purpose doctor, I wouldn't have to go through this ritual. Please!

Sunday, November 28, 2010

A new thought

Here's a new thought:

'What it means to win the war on cancer is not to eradicate cancer from our lives, but rather to imagine extending what I call this cat-and-mouse game with cancer as far as possible while retaining as much dignity of patients as possible.'

If you think about this for a minute, we have been fighting the so called war on cancer for over 40 years and haven't gotten there yet. So maybe instead of just focusing on the cure, but what about extending lifespan and retaining patient dignity as well. The author phrases it as though it should be done instead of research for a cure. I don't completely agree with him but I like the thought.

Researchers should be empowered on two sides here: one group work on finding a cure for cancer and the other group work on extending lifespan of cancer people and retain patient dignity. Perhaps both sides are equally important.

These thoughts come from a new book which I think I will read by Oncologist Siddhartha Mukherjee, called "The Emperor of All Maladies: A Biography of Cancer". Any new thoughts on the cancer interest me. In this book he writes a biography so that we can understand and dissect it better.

He states 'We write biographies in order to understand, to decipher the psyche, to enter the personality. In a sense, we’ve been trying to do this with cancer for nearly 4,000 years.' Perhaps this will help make sense of this disease. I can't completely agree with him but I think he has a good thought.

Saturday, November 27, 2010

Live out your dreams

There are people around us who inspire us. The latest in the line is the boy who at 11, had a brain tumor with a poor prognosis. He now plays foot ball. It was important to him to play because he didn't want to wonder what his life would have been like if he didn't play. And he wants to inspire people and prove anything is possible.

Another one is Jothy Rosenberg who with one leg, is an amazing cyclist. His blog is entitled 'Who says I cant'.

A bit more of a canned version of this is the movie 'The Bucket List'. Just because you are old and dying of cancer, doesn't mean it has to be dull and boring. Do everything you can while you still can.

At 19, I was told to go live my life as I should (not a good word in medical terminology, 'would' would have been a better choice). Then followed a long lecture of what not to do and to do - get plenty of sleep, eat a healthy diet, continuously monitor your health, get regular check ups, blah, blah, blah. Well I was in college, I wanted to stay up late and drink beer with my friends.

I thought about it and came to the decision that while I wasn't going to play in traffic, I was not going to live a boring life. I have traveled internationally, I have studied abroad, I skied off the headwall in the Rockies, snowshoed up mountains, bike riding, roller blading, went on Club Med vacations, climbed mountains and more. Next year I am going to Iceland. I can't hike, ski, snow shoe, roller blade, bicycle, climb mountains any more. But I can still walk, take pictures, experience a new culture, and have fun. Because I can.

Then when I come back from Iceland, I'll have to plan our next trip.

Friday, November 26, 2010

Facebook

When I was diagnosed with breast cancer, I looked all over online for support and information and found the message boards on the Komen website where I hopped on and started reading and asking questions. Then I saw 'Crazy Sexy Cancer' and read the book and found Kris Carr's website, Crazy Sexy Life, and joined up and started reading. Somewhere along the line, I joined Facebook and became pretty active there. I also started finding lots of support, reconnecting with childhood friends, and wasting a lot of time.

Then the Komen site changed its message board software which caused all kinds of problems and a bunch of us drifted over to Facebook and stopped going to Komen. Then someone on CSL moved to Facebook and now everyone is on Facebook. I mean the world is on Facebook.

I am on Facebook a lot. Probably too much but that's another story. Facebook is a microcosm of the world - everyone has different opinions, thoughts, etc. People play games and ask others to play. People want to be friends and then more and more. (How did I end up with 288 friends?)

Somethings about Facebook are irritating. I find its constant upgrades and improvements a pain in the butt. Stop moving things around!!! And I won't even talk about the security changes which I think they do just to give everyone something to post about.

I also I am not sure I am a big fan of the requests to post this as our status to show your support for this cause. You see this a lot. I never do it. Its just like forwarding chain emails. (I do admit to forwarding some chain letters back as a teenager when they involved photocopying and sending to the other side of the world in an envelope with a stamp.)

There was one this morning that made me think for a second:

'Every person has 1000 wishes, a cancer patient only has one: to get better. I know 97% of you won't post this as your status, but my friends will be the 3% that do, in honour of someone who died of, has had or is fighting cancer. :( x'

Then I thought, no I can't post that because we don't want to get better. We want a cure.

Thursday, November 25, 2010

The scandal of it all!

Egad! Apparently there are cases of cancer that are treatable if found early but unfortunately are often diagnosed too late! Well, some times cancer progresses a lot faster than thought. Or even if mammograms are done regularly and there are iffy areas, they are given a clear until next year. (By iffy areas, I mean things that are noted as being different than expected but not a clear sign of cancer.) Who knew??

For Pete's sake (whoever Pete was, his name is used a lot), I mean really. This isn't breaking news. Medicine is not an exact science. People should get regular well being tests but it doesn't mean every case of cancer will be found at early stage. Cancer is sneaky.

Don't put us cancer people on the woulda, shoulda, coulda road. We try. Don't fill us full of regrets and unhappiness we have enough of it all ready.

Wednesday, November 24, 2010

My cat ate my homework.


I forgot to read my damn free book for my expensive exercise class. Perhaps I will plead chemo brain. Or maybe I will try to read it this morning. It is going to be a busy morning. A plumber and tiler are coming over at 830 to look at the work we need done for our minor kitchen/bath rehab that we will do in January. We need to make the house look civilized so they don't think we are total slobs between now and then. It doesn't help that we are watching TV in our pajamas.

I did not sleep well last night either. I fell asleep on the couch and woke up at 1 when I went up to bed. (My husband claims he tried to wake me up.) Then I woke up again at 4 and couldn't get back to sleep so I gave up and got up. I made three of my four pies already. I'll make the last one later as well as the sweet potatoes.

I was talking to a friend last night and thinking about what I have to be thankful for - husband, friends, family, what is left of my health, that I live in a safe part of the world with access to clean water and healthy food. I guess that's about it. I mean I could come up with some schmaltzy sayings or make a giant list but that about sums it up.

Tuesday, November 23, 2010

I have homework to do!

Last Monday, as in a week ago yesterday, I started a new exercise class. Its one of those with the big price - free if you had cancer (in this case breast cancer). It meets twice a week on Mondays and Wednesdays. I knew I would miss last Wednesday and yesterday but will make it tomorrow. I was told that you get two free books with the class that contain all the exercises and you need to read a chapter a week in one of them.

Well, I have never been very good about homework. I worked hard in college but fun interfered with studying so I ended up with a decent grade but not magna cum laude by any means. After college I did get two post graduate certificates and did do my homework but maybe now I am off the homework study thing. I can't remember to read the damn book. To be fair I once took the book out the library and eventually it made its way back unread and overdue. But I do mean to try to read the damn thing this time. Especially since now I have my free but expensive copy.

Sometimes this free if you had cancer thing bugs me. Everyone means well, but I find the price too high personally. There are free weekends, free t shirts, free dinners, free classes, etc. But they weren't free to all of us who receive them. They come at a very high price. Personally while I appreciate the thought, I would rather not be eligible.

Monday, November 22, 2010

Get me out of here

So you had surgery and as soon as the really feeling bad part is over, you want to go home. Why stay in a 'pseudo-hotel' where you never get a good night's sleep because of noise and interruptions - I do not know why they insist on taking blood samples at 5 am. The food is not that great and frankly you'll sleep better in your own bed.

Hospitalization is often needed after surgery. Usually the hospitals send you home sooner as opposed to later but sometimes you need to stay hospitalized if you are in traction or have mobility issues or still have significant pain levels or whatever reason. Even after day surgery, are you ready to go home?

But is your home equipped with everything you need? What if you broke your leg and live in a split level? What if you live alone and don't have anyone to help you? What if you have a drain which needs to be checked twice daily? Are you equipped for all this?

I have been through two variations of this. I had day surgery on my knee to clean up a skiing accident. I lived by myself in a ground floor apartment. My parents took me to and from the hospital and a friend came and spent the night as I was not supposed to be alone during the first night after surgery. More recently I had a hysterectomy and was sent home after five days as an in-patient and was told stairs once a day only for the first two weeks. I was lucky that we live in a house that had everything I needed on the first floor. I would go downstairs before my husband left for work with clean clothes for the day. I could shower downstairs, eat, sleep. Then when my husband came home I would go back upstairs. That worked fine. After my axillary node dissection, I had a drain that a visiting nurse came in a checked every three days and my husband, who has a stronger stomach than I, would clear it out twice a day (yuck).

I was lucky in these that I was prepared and okay for my stay at home. I could easily see how others would have problems with this. If I lived alone after those two operations, things would have been much more complicated.

But there has never been a time at a hospitalization that I wanted to stay in the hospital. I am always the one to say 'get me out of here!

Sunday, November 21, 2010

Decision making

I make my own medical decisions. I do. I make decisions about lots of things (my husband says we always end up doing what I want but that's another blog post) but I feel comfortable making decisions. When it comes to medical decisions, I usually make a decision when first proposed to me and do not opt to go home and 'sleep on it' or research the hell out of it.

Dr. Berk had an unfortunate bike accident that resulted in a spinal cord injury. He partially credits his return to health as a result of the involvement of his family in the decision making process and how it made them stronger as a family.

Granted, the decisions he dealt with are different than the ones I have been making. I often make my own medical decisions, sometimes I consult my husband but usually I just act. Its my body and I get to decide what is best for it. Last year, when my husband was dealing with the fact that they couldn't get clean margins on his polyp removal, I bit my tongue and let him decide what he wanted.

Now are we wrong? Should we consult each other on each decision? We did get married until we were in our 40's so were used to making decisions on our own. We communicate but make our own decisions. However we are about to under go so house renovations - these decisions are under a microscope here as to what we want to have for a kitchen counter top, kitchen floor, how funky the bathroom tiles can be, etc. This is a different kind of situation for us.

I think if we can accept each other's medical decisions, we are okay with how we handle things. Home improvement is another story.

Saturday, November 20, 2010

Dont forget them too

There are cases of childhood cancers where mom and dad gather around and hold hands and take their child back and forth. Its a horrible time as parents are afraid their young child will die. Parents should never see their child suffer through chemotherapy and die before them.

There are cases of cancer of older adults - over 40 - who account for the vast majority of cancer cases in the US. The are the expected age group to get cancer and are screened and tested for it through mammograms, colonoscopies and PSA tests.

Then there are the cancer cases in young adults, 19 to 39. The group who are likely to have little or no medical coverage, less likely to go to the doctor regularly but still get cancer. Cancers that are often discovered late because of the less frequent medical visits. They also feel too old to get their primary support from their parents and look to their friends for support.

Its only in recent years that young adults have been noticed in the cancer community. In the past, they were offered the support groups and other resources that were 'for old people' and told to go about their lives after being blasted with a crisis that basically shakes up everything and causes a lot of trauma in their lives.

There is one great organization that focuses on this 'lost' generation - that is i2y. But now there is another group called Focus Under 40.

I call them the lost generation because if you are between 19 and 39 and have cancer, you are young and dreaming of your life and making a career. You are starting on the road of life and it just turned into a roller coaster that only stops at the oncologist's office. We should not forget this lost generation who are coping with cancer as well.

I know because I was one. I had cancer the first time at 19. The doctors said I should go about my life. There was no support. This is one area where we need to focus our efforts to support these young people. I am very glad to see these two groups and hope there are more to come.

We should not forget them

Friday, November 19, 2010

In the category of I clearly do not have enough medically wrong

A few years ago my brother made a sarcastic brotherly comment about me running out of body parts to have something wrong with them. Well apparently I forgot about my elbow.

Yesterday morning, I discovered I had a problem: It was painful to drink coffee because my elbow hurt. I got to work and told my co-workers I had a drinking problem because I couldn't drink coffee (or herbal tea or water or anything else). It only hurts if I bend my elbow or attempt to pick anything up or twist my arm.

A long time ago - maybe 15 or more years, my right wrist/elbow was giving me a problem. I saw a specialist and he told me it wasn't carpal tunnel in my wrist but my ulnar tunnel in my elbow. He told me not to lean on my elbow, not to sleep with my elbow bent (with my hands up by my face), and other behavior modifications. I even switched to using the mouse with my left hand (actually its kind of cool because I can take notes while using the computer). It seemed to go away.

Over the past six months or so my elbow has been starting to bother me again. I took the mature root of ignoring it (my inner two year old squinched her eyes shut and screamed 'no, no, no' at the idea of another medical ailment). I assumed it was a result of too much computer and too much knitting and crocheting. I cut back on the knitting and tried to be good about computer stuff. It hurt off and on and I just coped and pretended it didn't. Basically, I ignored it. Of course, this is my right arm, as opposed to my left arm with lymphedema issues.

Yesterday it was very painful while driving to work and drinking coffee. I gave up on the inner two year old and broke down and called my doctor. I saw the Physician's Assistant who is referring me to a specialist. I already take pain meds and an anti-inflammatory so that route is out. I already am doing exercises so that is out. She thinks I may need PT and an injection... Oh joy. Something else to see a doctor about. Just when I was starting to enjoy this monthly doctor appointment business.

Thursday, November 18, 2010

I joined a workout class

I am really determined to lose weight and get in shape. I feel flabby. I don't feel flexible. And my size 8 wardrobe is calling me. I miss those clothes.

I joined a workout class. A local gym is offering a class, the Pink Program (but I don't have to wear pink), to those of us luck enough to have had breast cancer. So its not really free, but if you survived surgery/chemo/radiation and a complete loss of modesty as a result, you can take this class and regain your flexibility and fitness. According to the book that comes with the class, The Breast Cancer Survivor's Fitness Plan, you will 'reclaim health, regain strength, and live longer'. I don't know about all that but I will try it. Its a 12 week program.

I do admit I took the book out of the library once, racked up a lot of overdue fees and never read it. I am also supposed to be reading a chapter a week so it even comes with homework. And a medical release that I have to get signed by my doctor when I finally get the damn form.

The class started Monday and is on Mondays and Wednesdays. I went on Monday, missed yesterday and will miss next Monday because of previously scheduled business commitments but will go next Wednesday. The instructor said that is okay because the first two weeks are stretching only so if I just do the exercises regularly and I am the only participant so far. Yes, its a class of one. Which is kind of cool but have you ever done exercises while watching in a mirror with the instructor, who is probably a size 4...

I did the exercises in class on Monday. The instructor told me that I might be sore the day after. I thought, hah, I do my other exercises so I won't be sore. Hah is on me. Ow to my hips. Ow to my back. Ow, ow, ow. But I have been doing them every day and will continue to do so.

I have also been reading ahead at some of the exercises in the book. I won't be able to do any that involve twisting my back at all. But that wont be for weeks so I'll talk to the instructor before then.

But since the price of free to breast cancer people is really kind of high I do hope I get my money's worth and regain my inner size 8.

Wednesday, November 17, 2010

Caregivers and caregiving

Navigating Cancer has just announced the results of their recent Caregivers survey. There are millions of cancer patient surveys out there - what kind of cancer, how long have you had it, what stage at diagnosis, treatment etc. Then there are a few more million surveys and questionnaires on how well you are protecting yourself against cancer through lifestyle, exercise, and eating habits. Caregiver surveys and issues are seldom addressed. Or should I say addressed too infrequently.

Navigating Cancer looked at the issues caregivers face and the emotional, financial, and physical strains they cope with. They surveyed over 300 current and past caregivers - most of whom are spouses or other family members. I can easily compare this with my life in the past three years where my husband was my caregiver during my treatment and I was my husband's caregiver through his surgery and (long) recovery from his colectomy.

It is nice to see in the survey that we are not alone in dealing with the same issues. The number one item that was provided by caregivers is moral support - also known as 'smiling on the outside and crying on the inside'. "Yes, you'll be fine (I really, really, really hope)."

Our big coping mechanism is humor. While I was going through chemo, my husband accompanied me and we would play scrabble while sitting there for hours of infusions. My husband would tell me he liked it when the drugs kicked in and I couldn't form words longer than 2 letters and he would easily win.

But cancer is very isolating as are many other medical ailments. Your caregiver becomes your rock who supports you through the roller coaster of treatment. You don't get to choose your caregiver, they just sort of happen. You know who they are, they know who you are and what you need. But they are greatly under appreciated. They make sure you get to appointments when you can't go by yourself. They change bandages, look at yucky things and tell you they really aren't that bad. They help with drains. They remind you to take your pills. They hold your hand when it hurts.

Go give your caregiver an extra hug for their support.

Tuesday, November 16, 2010

Who is high risk?

Women who are at high risk of breast cancer now should get MRI's in addition to mammograms. They define women who are high risk as those with the BRCA gene mutation. What about those of us who have had breast cancer already? Aren't we at high risk? Should we be getting MRI's too?

Actually I think its up to our doctors who should get which test. But let's focus on the words 'high risk'. Yes those with the BRCA gene mutation are considered at higher risk of getting breast and ovarian cancer. But what about use who had it once? We can get it again. Don't forget about us too.

Monday, November 15, 2010

A very difficult decision

The most difficult decision for a patient is to reach the point of 'no more'. When it happens, it must be respected. This is also true of someone who wants to have a Do Not Resuscitate order in their medical file and living will. Basically an individual is saying its my body, let me do with it what I want.

It is a decision to die peacefully in a hospice or to keep fighting with chemo and treatments to the end. Or not to be surrounded by tubes and doctors and nurses but to be with family and friends.

A family member is sure to wish to change their mind and keep them fighting to the end. But if you have been told there is no chance or that there will be minimal quality of life, you must decide.

We all want to live as long as possible. But what happens when you don't have the luxury of living to your 90's? What if your health isn't as good? Or an accident happens? We all have approximately a 1% chance of dying in a given year. What would you want to be done if your number was up?

Every time I go in for surgery, I am asked if I have a living will and I can say yes I do. I guess what I am trying to say is don't wait until someone has to ask you your thoughts on this as it would be very difficult to bring it up, let someone know before hand.

Sunday, November 14, 2010

So what does all that pink crap really mean?

Pink was my favorite color. Along came breast cancer and its pink ribbons on everything - socks, t shirts, cars, food packaging, store windows, etc. Then the world is bathed in pepto bismol for the month of October (instead of orange and black). Millions wear a pink bracelet. Thousands wear little pink ribbon pins to declare their medical history.

And what has changed? Not a hell of a lot. Some companies got rich making a lot of pink crap. Everyone knows what color ribbon stands for breast cancer. Everyone will say the words 'breast cancer' instead of whispering it as a death sentence. Teenage boys can say the word 'breast' with the word 'cancer' without snickering. The world is full of people who know about breast cancer but are sure they will not get it.

We are aware of breast cancer thank you. We do not need more awareness. We need a cure. I know I am being redundant but awareness is overdone for breast cancer. Can we talk about other kinds of cancer? There are lots of cancers out there. Some grow tumors. Some grow in your blood. Some grow in your lymph system. Some case a lot of pain. Some you don't feel until its way to late. Some cannot be operated on. There are millions of people in this country who have been down the cancer road and are waiting, not very patiently, for the day they do not need to fear their cancer's return because there will be a cure.

The pink crap has brought us a pepto colored world where people can talk about breast cancer but where we still can't make it go away.

Friday, November 12, 2010

The right way to correct an error

We all know there is the right way and a wrong way to correct an error. Back in my early years in the business world, where word processing software was just beginning, we sent out a user manual to all of 300 stores in the chain I worked for with the word 'public' embarrassingly missing the letter 'L'. It was discovered after being mailed out and we ended up making a huge joke of it and laughing at the next sales meeting. It was rather embarrassing if you think about it but nothing more. We admitted our mistake and it could not be corrected. It was done and in print and out there.

A more significant error which involves harm usually deserves immediate admission and correction. So what would you expect after a surgical error? Sometimes they can't be corrected - we took out your left kidney not your right one or we replaced your left hip not your right one. Those are clearly more than an oops. There are supposed to be procedures in place to prevent this type of error. There is supposed to be a time out where everyone agrees on what is being done.

Surgical errors are usually admitted later and made public long after. But read through this doctor's story after he realized he performed the wrong surgery by dictating his surgical notes. He decided to make it public in the Journal of Medicine and exposes the Swiss Cheese system that is followed.

This is the correct way to handle things. First he went back and corrected the error. Then he went through the system and figured out what went wrong and went public so that the system can be better corrected as more are made aware of its problems.

I think the next time I have surgery I will write notes on my body showing them what needs to be done after I am sedated. 'Please cut here along the dotted line and only remove the following items.'

Thursday, November 11, 2010

As the legal system gets involved...

I had posted on the long term side effects of prescription drugs and now the legal system is getting involved. I am sure they will figure this out in few decades with millions spent on legal fees.

I have great respect for our legal system but sometimes going to court doesn't seem to resolve anything. It makes a bunch of lawyers rich and the drug company loses because they have to pay a fine and pull a drug off the market. The patient loses because their health isn't any better. The woman in the case referenced in the article had her jaw break after taking Fosomax. They fixed it with bone from her arm. Any award is not going to undo it.

When you take a drug, they give you lots of fine print about the potential side effects. I think we all think 'that won't happen to me' so we basically ignore them. (Unless it is chemotherapy that makes your hair fall out.) But basically anything you put inside your body has a potential for a side effect. I mean, if you eat ice cream, you might get fat. If you drink soda, you might get the hiccups.

I do think people are a little too quick to jump to the legal system to resolve their issues. If you think I am wrong, go watch a few episodes of Judge Judy or one of those other shows.

Wednesday, November 10, 2010

Respecting Patient Needs

Every person has their own comfort zone and needs which need to be met to ensure that they are able to cope with their medical appointments. Sometimes your comfort zone gets invaded but you also have to cope.

At my first cancer surgery, I was mortified to find out I woke up after the operation wearing a different gown than when I was sedated. Did they see me naked???? I didn't dare ask. I also remember the first time I went for a gynecological exam and it was a male doctor!!!! I had grown up with a female pediatrician and wasn't used to male doctors. I coped and was okay with it but mortally embarrassed.

In the case of Muslim men and women where there are strict guidelines on men and women being in the same room, never mind touching each other, if they are unmarried, medical exams can be restricted or just very difficult. It is not just Muslims that have this issue where their religion forbids it but anyone who's comfort zone does not allow for someone of the opposite sex to touch them. Some people are also just very modest and don't want someone of the opposite sex to touch them.

When my husband needed a primary care physician, I asked him his preference - male or female - and he definitely wanted a male doctor. To this day, I usually prefer a female doctor myself. Currently, the only male doctor I have is my back pain doctor. I think all the others are female, some by my decision and some by chance.

If you think about it, boys and girls are different (in many ways) and I prefer a doctor who has the same body parts I have. Ovarian cysts don't happen to boys. Hysterectomies don't happen to boys. I want a doctor who can understand my body better and what is going on with it.

I am not saying women should only have female doctors and men only have male, I am saying that this is what I am comfortable with personally. This is my comfort zone. If someone has the added issue of religious dictates, they should be respected as much as possible.

Tuesday, November 9, 2010

More thoughts on anniversaries

Last night I went to a volunteer meeting for the local American Cancer Society Relay For Life in town. I learned a new word - voluntold. When one is a volunteer, their spouse or family member is often a voluntold. I told my husband this last night and his response was 'well at least there is a word for it'.

While at the meeting last night, one person was there and she said it was her 15th cancerversary - 15 year since she was diagnosed, 15 years of cancer free. She had a first date with a new guy and was going out to celebrate after the meeting.

I started thinking about this. Next August would be 30 years since my first diagnosis but next May is 4 years since my second. So do I have to start counting all over at 4? Or since they were two different cancers, can I say 30 and 4? This befuddles my chemo brain. I will have to think about this some more.

But I will say that if I think about how times are different there have been some significant changes. In 1981, the Internet was in its infancy (if you must know the Arpanet, the Internet's predecessor, started in the 1960's). Cancer was a killer, it was the whispered C word, it was not talked about, support groups were for little old ladies held in churches. The treatment was barbaric, chemotherapy was brutal, surgery was radical, it was terminal. Medical information was limited to textbooks to be deciphered with a dictionary at hand.

In 2007, cancer is widely discussed online, there are blogs, online communities, support groups full of young and vibrant people. Cancer is not considered terminal. It is chronic. Medical breakthroughs are happening. Treatment is evolving at the cell level. Information is everywhere.

In 2011, what will the future bring us? I don't know. I do know one thing, to celebrate 30 years of living with cancer and a significant birthday, my husband and I are going to Iceland. Why? Because its there and I haven't been there.

Monday, November 8, 2010

A bit more 'blah, blah, blah'

Frankly I am not very impressed by the big news that lung cancer mortality rates are reduced by CT scans. Why? Because its not a screening for everyone like a mammogram. Its a screening for current or ex-smokers who have smoked for 30 pack years. What is 30 pack years? People who have smoked a pack a day for 30 years or 2 packs a day for 15 years. So if you have been abusing your body through heavy smoking for years, now we can help save your life.

I am a former smoker. (I'm not going to tell you how old I was when I started smoking because my mother reads my blog but you can be assured that I started smoking before college. But then she used to smoke too. In fact sometimes she would bum cigarettes off me.) I was a bad teenager and smoked. But I have never smoked that much. At my worst, I was probably a half pack a day. But for the last 20 years, it was probably 5-7 cigarettes a day. Yes I kept smoking after my first cancer diagnosis. Then I quit, then I started again, then I quit, then I started again, repeat for a few years, and then I finally really quit - after my second diagnosis.

What I am trying to get at is I know how addictive smoking is too. Its very difficult to quit. But don't tell the heavy smokers that now they can be relieved of the thought that they might be able to find out if they have killed themselves through their smoking through a CT scan of their lungs. This is nothing more than the strategic implementation of a test to see if the harm from the smoker's self abuse can be detected before it kills them.

Also, even though smoking is a leading cause of lung cancer, there are thousands who get lung cancer and die from it even if they never smoked in their life.

We still need a cure. Don't get stuck on the detection side of things, find a cure please.

Sunday, November 7, 2010

If you are reading this, its too late.

The best way to deal with changing the daylight savings time thingy is to stay in bed so if you a reading this its too late for you. Well, in our house, we need to explain to the cat about things like weekends and time changes etc. He thinks the world revolves around him and his biological needs for things like food, water, and attention (and don't step in his gift he left on the hall carpet outside the bedroom door) so at 430 am (old time) he began his morning wake-up-the-humans routine.

I don't even know if we are on day light savings time or regular (standard) time. All I know is I will be sleep deprived for a few days and will wonder which clocks and watches I reset. Except the basement clock I never reset - its just wrong half the time. I can handle international time changes of 5 hours or 14 hours no problem but one hour drives me crazy for days. But travel to a place with a one hour time change I can handle as well.

I don't really understand why we have to change time. Its something to do with saving energy and enjoying the evening natural light. I did learn that Ben Franklin came up with the idea but it took over 100 years to catch on. If its to enjoy the evening daylight, it doesn't work here in eastern New England where I think we should really be in Atlantic time if we were really technical about it.

Enough about that. Stay in bed. Sleep late. You'll feel better.

Saturday, November 6, 2010

We count too!

Yoo hoo! We are here! Don't forget about us and how we feel and how we are treated! Doctors are just starting to realize that the patient experience is part of the equation. Well maybe not just starting to realize this but more like acknowledging that how we are dealing with results and side effects are important too.

I will say doctors are human beings who are caring enough to enter the field of medicine and study for so many years to learn to heal people. But there is science involved in medicine where they are trained to read the pathology reports on cells and look for clear yes/no replied. Not, 'well, I felt pretty crappy after two days on that new medication so I stopped taking it'. Well how is 'pretty crappy' defined. Were you throwing up non stop or did you feel like you wanted to lie down for a bit?

I talk to my doctors and they suggest different things to me - procedures, surgery, prescriptions, etc. - at different times. My next upcoming discussion is with the ankle surgeon. I badly sprained my ankle in the summer of 2009. A little bone chip, a little tendon tear, and little cartilage chip (in a moment of stupidity I tried to look over my shoulder while walking - the danger of multi tasking). I have had x-rays and an MRI and tried PT, exercises, balancing, etc. I have been told if it is still problematic in December, I can have a 'cleaning out' surgery as opposed to a 'repairing' surgery.

My ankle is not better. I have been told it is 'chronic' (what a lovely word). I am really not looking forward to surgery (it would be my ninth - how many surgeries and then do you stop keeping count?) but my ankle is still not better. It is achy, etc. But if I had surgery, I know there would be a rehab period. Would it ever end up being better than it is now? How long will it take to stop being achy?

When you have a procedure/surgery/medical (mis)adventure, its not just the process of what happens when they do it but also, what are the long term effects. Will I have scar tissue that causes problems in moving my arm for the rest of my life? If you take out all those lymph nodes, will I have to worry about lymphedema for the rest of my life? What about underarm shaving?

For my next surgery, I want to know, not just what it will be like if I don't have it (I already know that part), but if I do have it, what are long term expectations, when will it feel better? Will it ever feel better than it does now? What about long term susceptibility to other injury with the surgery vs. without the surgery.

Some of my other surgeries have had more significant consequences if I didn't have them. When they say they are taking out the nasty cancer cells, you sort of shrug and say 'go right ahead' and don't worry about the long term results. I am sure they did give me a piece of paper before each surgery that had fine print to tell me about side effects. I have them somewhere... But maybe I should have paid a bit more attention to some of them.

I guess my point here is that we, as patients, need to educate ourselves on, not just the what happens if I don't have the procedure but what happens if I do. And then learn to speak up and tell our doctors about the problems afterward.

Friday, November 5, 2010

healthiness and dying

I stumbled across two interesting articles this morning. First of all the CDC just released a list of the most common causes of death in the United States

15. Homicide
14. Parkinsons
13. Hypertension
12. Chronic liver disease and cirrhosis
11. Suicide
10. Septicemia (infection in the blood)
9. Kidney disease
8. Flu
7. Diabetes
6. Alzheimer's
5. Accidents - mostly motor vehicle ones
4. Lower respiratory diseases such as emphysema and asthma
3. Stroke
2. Cancer
1. Heart disease

I will say that Cancer and Heart Disease apparently account for approximately half of all deaths just between the two of them. I was surprised to see somethings on this list - suicide causes more death than murder? Blood infections/septicemia still are a leading cause of death. I would have thought that with the antibiotics available these days.

What I read from this list is that while modern medicine has made huge advances, there still is a lot of room for improvement - both on the side of medicine but also on the side of living healthy. So while medical research turns out cure after cure, us patients need to do our part to live healthier. Cirrhosis is mostly caused by alcohol abuse. Many cases of diabetes are the result of obesity. Murder is a social problem - crime control is important. Suicide - is it the result of depression mostly? More mental health professionals please! That's just a start. (I am not going to talk about cancer on this one - I think I have talked about it enough in the past and the answer is still the frustrating reply of 'they don't know'.)

I did also wonder what are the leading causes of death in other countries to compare with. I mean they tell us the US has such a high rate of diabetes and cancer and other Western diseases that are far lower in other parts of the world.

I did find this one article on who lives better as they age - Americans or British? Apparently if you live in the US you are likely to live longer but in the UK but you are less likely to have a chronic disease - so more likely to be healthier. I don't know but I think Darwin fits in here. If you make it to old age, you are likely to be healthier or something.

This too much too early but if I mull it over for a while, I might have a more profound thought. Meanwhile I will ponder causes of death and hope to avoid #2 for a long while to come.

Thursday, November 4, 2010

Yes, you can help

I don't understand this. It always seems to take someone famous to get sick or to die or to tell their story to make people realize that they could get it too and that they can help.

Earlier this week, Shannon Tavares who starred as Nala in the Lion King on Broadway died of AML or acute myeloid leukemia. She died because doctors were unable to find a bone marrow match in time.

Apparently now there is increased interest by the general public in becoming a bone marrow donor. Well, you always have had the option of becoming a bone marrow donor. This isn't different. Its just now a lot more people have become aware of it since she died.

I don't know I sometimes wonder if people live in a cocoon thinking that 'it couldn't happen to me' - whether its cancer, MS, car accident, house fire, or any other number of other 'bad karma events'. They are protected by this bubble of safety that will prevent it from happening to them.

Then when 'bad karma' happens to them or someone they know or admire, they realize it CAN happen to them. Then they jump on the bandwagon and want to help.

What they don't realize is that they always could have helped. They just didn't bother. There are lots of ways to help out. Do you donate to charities, do give blood, would you donate bone marrow, do you volunteer anywhere? Not everyone can do everything. My husband can't donate blood because he lived in Europe during the 1980s when there were fewer restrictions on Mad Cow beef but he does give weekly to the Red Cross through a payroll deduction.

Can you take a minute to think about how you can help others? If you are too busy to do something, can you donate money? Even $10 helps. If you have no money, can you help in your local school, hospital, or library by reading to children, usher at an event, donate blood or register for bone marrow donation?

Helping others isn't limited to money. It can be in lots of different ways. Its part of humanity to be kind to others. So yes you can help. Its just too bad that often someone has to die before people realize it.

Wednesday, November 3, 2010

The riddle of the cancer relapse


Cancer relapse or the 'Cancer Sleeper Cell' are oh-so-reassuring (NOT!). I read this article and paid attention to it - through all five pages. So they are now trying to figure out if cancer has its own stem cells. But they haven't quite figured it out yet. They are trying. They have been working in this area since at least 1974 - so in 36+ years they still aren't sure.

On one level its quite interesting and almost exciting that they are looking at cancer down at the cell level to see which ones are stem cells - capable of regenerating themselves. They are this deep into cancer biology that they are looking at it cell by cell, detail by detail. They can define different kinds of cells and know which ones they should treat differently.

On the other hand, its been more than 36 years so this must be quite a conundrum if it is yet to be resolved. Why is it so complicated? I don't know. They, meaning the researchers, don't know. Yet. Even going back to the ancient Greeks, they aren't sure. Is cancer what the Greeks called 'black bile'? Or is its secret hidden in the idea of a cancer stem cell?

All of this adds up to the cancer relapse riddle. Why do some relapse or recur and others not? Did the combination of surgery, chemotherapy, radiation, and hormone therapy get rid of every cancer cell in my body? They aren't sure. Just because a tumor has disappeared visually, that we can detect, we don't know if it had stem cells that could lead to recurrence. And there is no time limit on recurrence. What if they go dormant for years and then return.

Thyroid cancer is a relatively slow growing cancer. So if there are thyroid cancer stem cells, and they grow slowly, how long will it take them to be detectable. It is my understanding that current medical technology such as a CT, MRI, ultrasound, or Xray can only detect down to approximately half a centimeter. In a pathology lab, after that something is removed from your body - whether by biopsy or surgery, they can see into the cell but they have to have found it before they can take it out.

How fast do things grow? I had a breast MRI and they indicated a 'suspicious area' that they wanted another look at in six months. At the six month mark, it was a 0.7 cm tumor (benign that time).

Well, we can't run off for tests monthly and have to assume the best - if necessary, go read Candide and learn about the 'best of all possible worlds' and get some optimism. The cancer relapse is still a riddle and we have to live with it.

Tuesday, November 2, 2010

Rambles on elections

Today is election day. It is 650 am on the East Coast and Facebook is littered with people saying they already voted. I am confused. The polls here don't open until 7am. How did these people vote before 6am? Absentee ballots? I don't understand this but maybe they meant they were going to vote which isn't the same as saying you voted because you can always get a flat tire on the way to voting and never make it.

I see a bit of irony or something in the fact that the political robo calls jammed Comcast's phone system in MA and NH last night so none of the calls got through. All that effort and they forgot to find out about phone system capacity - so much for technology overpowering real life. And then there is some politician who is currently residing in jail because his campaign overwhelmed the phone system at a recent election so that his opponent's calls didn't go through. So if your campaigns calls don't get through because they jammed the system, do you get to jail yourself?

The best thing about today - after I go and exercise my right to vote - is that it is the last day of political ads on TV and radio. No more newscasts overtaken by dissection of the candidates' positions. Back to real news.

I don't mind political ads where a candidate's views are described. I don't mind political ads where a candidate says what I think is better than my opponent and this is why. I do mind political ads that slam the opponent without giving any details. They are just mud smearing.

I will say there is a political candidate in another district in the state who is running for state rep or something (I don't know, I am not in the district and can't even keep up with the local candidates) and his opponents say that 15-20 years ago he was a police sergeant he ignored the fact that a teenage girl was being strip searched in the next room by another police officer. He supposedly ignored her screams. If this is the case, this was a crime. I am sure the statue of limitations has run out on this but if this is true, it is worth investigating.

I am sure I posted a similar post at the last election but that's enough for today. I will go for a walk. I will vote.

Monday, November 1, 2010

Caregivers have feelings too

I have been pondering this one for a few days. A woman who has had breast cancer twice and had one mastectomy followed by another wrote into an advice column. She was writing about how her husband wouldn't have sex with her since her last surgery 3 years ago. The advice column said she was right in going to counseling because her husband was probably still upset about her second round of breast cancer and surgery and it wasn't about her loss of breasts.

Readers also commented on it. One said said he's having an affair. Two said counseling. But overall the answer was he was too scared of losing her and traumatized by it.

I have been on both sides of the cancer diagnosis. It is traumatic. If you are the patient, its mostly focused on you. Very little is focused on the caregiver.

Once the physical healing is over, the emotional healing is still going on. My husband and I have had many conversations from both sides of the diagnosis about life insurance, what if one of us dies, what would you do, that end of life conversation, and more. all the taboo topics are no longer taboo when you the c-word shows up in your life.

The woman who wrote in said her husband has his own business and works 7 days a week so he doesn't have time for counseling. Maybe his work schedule prevents him from seeing that his wife is doing okay these days. Maybe if he saw how well she was doing that would help him lose the feeling he might lose her. Maybe burying himself in his work he is hiding from his feelings?

I am no psychologist but he needs some care too.