Sunday, February 28, 2010

We are what we eat

I did some reading again. I try to limit myself to trashy novels, the daily newspaper (especially the comics) and the closed captioning on the TV at the gym but sometimes I do expand to news sources and the internet...

So I learned a few new things. First of all if you have pain, there is a good chance that the new fancy drugs, aren't going to help you. Gee thanks. I do take one of those and thought it was helping. Well at this point I am going to keep taking it for now.

Then I read that people in pain such as fibromyalgia (which I have not been told I have but believe that some of my pains in my back are referred neurological pain because it is treated that way) should change their diets and avoid all sorts of different things and eat other things.

I learned that the majority of American's are closet eaters - and hide what we are eating from our families and friends. (I admit to the plate of triscuits with a little cheddar cheese on them in the microwave for 20 seconds until the cheese melts as a meal substitute when my husband isn't home.) But we skip the chocolates and ice cream for the most part.

And then the ever popular advice for healthy living after breast cancer. I am working on that. I do all the things that this article tells you to do but I don't feel too healthy these days.

Finally, bitter melon has been shown to kill breast cancer cells. But its not proven, only tested a lab so it doesn't mean squat at this point. And is bitter melon in one of the categories of foods to avoid??? What is bitter melon anyway? Now I am really confused. I think its time to stop reading and go back to the Sunday comics.

Saturday, February 27, 2010

An attempt to be less whiney

I was thinking (sorry I know I shouldn't) and reread my recent posts and decided that I have been rather whiney recently, possibly even more than normal, if that is possible. Today my goal (and my husband will cheer when he hears this) is to be less whiney.

Admittedly my life has had its ups and downs recently and I am attempting to deal in a sane manner. I am glad to say that my husband is clearly on the road to improvement, which is important because one of us needs to be healthy. But my health is still struggling. Again. My ankle is not happier. The physical therapist nurse I saw on Monday about my arm suggested I step up my exercises of my ankle to see about rehabbing it or just have the surgery and not wait because I really should be concerned about falling. Feel the cheery rays of sunshine bouncing off me at the idea of more surgery. And all these exercises are taking up too much of my time each day. (And I rebelled and didn't do any of my exercises last night - hah! Because I didn't feel like it! Hah!)

I spoke to the back doctor's office Thursday and yesterday. They refilled my meds for break through pain and then said they would be back in touch about scheduling another injection in my right SI joint. This will probably take a couple of weeks to schedule but that's okay. However the nurse told me that the doctor is running out of things he can do for me. Great. Thanks.

I am still waiting to hear from the physical therapist nurse about a lymphedema sleeve which means I'll have to go back on Thursday to get fitted. A fashion accessory I can live without.

Wait, I'm sorry I'm supposed to be less whiney. Here's an attempt. The cat got more good medical news yesterday. The vet called and said she spoke to some other vets and nutritionists about him. Basically they don't know what is wrong with him. There is one last thing to be ruled out (Addison's disease which is very rare in cats but possible) so we go for a last fasting blood test on Monday morning. In the meantime he can have regular dry food again, including higher fat kitten food, and treats, in an attempt to reverse his weight loss (but I'll be happy to give him a few pounds if that would help).

Okay, so I'm not too cheery today. But this morning we (yes Walter has agreed to go with me) are going for a walk. Then I am getting a manicure and pedicure. I think screaming bright pink would be good. That's cheery. Then I get to do laundry. That's not. I give up. I'll go drink more coffee.

Friday, February 26, 2010

On keeping doctors in business

I believe it is my personal goal to keep the local medical profession in business. I spend entirely too much time seeing different medical professionals. Then I got hold of the pathology report from my ankle MRI. I think its written in secret doctor language that requires a doctor to decipher it. To be fair, most pathology reports require some level of decoder ring but this one really takes the whole case.

I will not bore you with the entire thing but here is the finally impression at the bottom:

1. Chronic full-thickness tear of the anterior talofibular ligament.
2. Evidence of avulsive changes of the tip of the lateral malleolus, better characterized on the radiographs.
3. Osteochondral lesion in the posterior lateral aspect the talar dome, with overlying chondromalacia and at least partial-thickness chondral defect. Associated small focal vertically oriented osteochondral fracture.
4. 0.7 x 1.3 x 1.8 cm ganglion or synovial cyst arising from teh posterior aspect the tibiotalar joint and intimately associated with the flexor allucis longus muscle.

My thoughts (because the doctor already told me what's wrong):
1. I have a ligament tear
2. I have a bone chip
3. I have a cartilage chip
4. I have an old cyst

I tried to struggle through the first parts of the description of the report and it was like reading a text book in a foreign language. So I clearly think that its a plot by doctors to keep them in business. If you haven't gone to medical school you can't translate this to real English. What if you could go for a medical test and get a report that told you what was wrong and magically knew how to fix it? Nah, not going to work.

Anyway, this week Walter went to the doctor twice and I only went once, but might have to go back today. (Next week I will hit my weekly average of two appointments.) Walter's procedure went fine yesterday. He seems less whiney (big sign of improved health) and ate his favorite foods without regretting it later. I am off to work today and have made a very healthy salad for lunch with hummus on top to be healthier. And I talked to the vet and the cat has nothing discernible wrong with him but to reverse some of the weight loss issues he is now allowed to have kitty treats again. So his life is now complete.

Thursday, February 25, 2010

How's this for service?

Yesterday afternoon my husband had an abdominal CT scan to make sure there wasn't anything nasty before this morning's procedure. On the way home (a 6.5 mile drive), I decided to check our home voice mail in case there was anyone who needed a call back before 5 pm and there was a message from the doctor with the results (which were clear). So we punched out of the parking garage at about the same time the doctor called us. He was clearly waiting for the results to pop up on his computer.

That is the quickest results ever in my memory. Way better than me having to call a week later to find out pathology. But now that I know it can be done in minutes, I can push a little harder, if and when the situation merits.

This morning I am sitting here drinking tea, that I had to make and go get in the kitchen myself (because the coffee delivery system (Walter) is not functioning this morning as he doesn't get any), before we leave for the hospital in 30 minutes. I would be happy to still be lying in bed but Walter gets to get that ever popular flexible sigmoidoscopy this morning. His goal is to be able to order pizza for dinner and start eating what he wants. My goal is to have a less crabby, less unhappy husband.

We are clearly hoping for a successful procedure here. Today I also have to remember to call the vet back about kitty and the lymphedema lady about getting my fashionable accessory - compression sleeve. Somewhere in there I also need to go to the gym. But now I have 28 minutes before we have to leave. I am sitting here in my bathrobe, wet hair, and not having done any of my exercises do I need get off my butt and get moving.

Wednesday, February 24, 2010

Dealing with medical news

As I deal with a continual onslaught of bad medical news, I feel as if I am still standing but reeling from the hits. The word 'bad' may be incorrect. Perhaps I should use the word 'unexpected' or 'unwanted' instead. I clearly have to incorporate the three day wallowing rule in to my life shortly and get up off my butt. But today and tomorrow I am spending it focused on Walter's fun. He gets a CT scan this afternoon and his procedure tomorrow morning. After we get through that, I will focus on me again.

Tuesday, February 23, 2010

Even the cat is stressed

Yesterday morning I took the cat to the vet and he had his ultrasound, which is fine - no nasty surprises. But he was really mad because they shaved his stomach (and he had to skip breakfast). I asked the vet about his pulling the fur off his legs and she said its probably stress. He did something similar before when I was going through chemo. He doesn't deal with stress any better than we do.

Yesterday I also went to have my arm checked. I have lymphedema in it. This is a long term side effect of breast cancer surgery. There is no cure (gee thanks cancer, the gift that keeps on giving, in more and more ways) and treatment is limited to compression, massage, and exercises. So right now it is mild. The hope is I do more exercises (five more exercises, sets of twelve, three times, twice daily) and manual massage and get a (damn ugly) compression sleeve and wear it daily for a few weeks that it might be managed that way. The next step is DAILY therapy for four weeks to see if that can control it. The goal is to keep my arm from blowing up like a balloon. Did I say there is no cure?

Lymphedema is a result of the removal of lymph nodes. Basically your lymph system is a plumbing system in your body moving around fluid. When they took out 20+ lymph nodes they messed up the plumbing system and the fluid does not drain properly from my arm now and backs up. It can be aggravated by any little thing such as cuts in your arm, trauma, etc. Since surgery I have been told no needle sticks or blood pressure in my arm and to be very careful about heat, cold, sunburn, cuts, manicures, stress on my arm in any way (carrying things), etc. I have been careful (this is one of the reasons I can't shovel snow or rake leaves or carry things). But in the past few weeks my arm has been feeling weird and I tried measuring it and thought it was off and Walter measured it and agreed that it was off so I went for an appointment. And unfortunately we were right.

I did fall a couple of weeks ago (during my week from hell) and strained and scraped my wrist which could be what started all this. The nurse/physical therapist I saw yesterday said that if I continue to fall, I probably shouldn't wait until May to see if my ankle heals but to go ahead and have the surgery so I don't continue to fall. Gee isn't my future full of all sorts of 'fun' adventures? She also said I should step up my ankle exercises.

Walter is stressed. Who wouldn't be? CT scan and then the balloon procedure. We are working on getting through this week.

Now I have to go do three back exercises - 2 sets of 15 each, five arm exercises - 3 sets of 12 each, and six ankle exercises - 3 sets of 20 each and take the rest of my pills so I can go to work. AAAAAAAAAAAAARRRRRRRRRRRRRRRGGGGGGGGGGGGGG!!!!!!! And if you see me or talk to me, I am really not ready to talk about this one yet.

Monday, February 22, 2010

On crabbiness and being tempermental

Over this weekend I was told (by my mother) that I was out of line and being cranky and mad at people. She was right, I was out of line and I admit it. But I was mad at my sister (we were trying to watch olympics and she wouldn't shut up and I was tired and my back was hurting) and sometimes with siblings, its very easy to resort to five year old behaviors. Sometimes all the years of aging behind us, they just strip away and we become our five year old selves saying 'don't touch me', 'she's looking at me', etc.

I am trying to live my life but have certain constraints these days, some are new and some are old. I have never been able to stay up late at night. I struggle to reach 10pm on weekends, if ever. I was never the kid to stay up past their bedtime. And now its actually worse. I just run out of energy each day and need to just get to bed.

These days I have all sorts of issues going on. When my back acts up, I get cranky. When I am dealing with my health issues, I get cranky. When I am dealing with my husband's health issues, I get cranky. When I am dealing with my cat's health issues, I get cranky. This week, I am dealing with all three so I will probably be cranky. I am also over scheduled. I need to allow myself some downtime every day so I can rest my back. I also have to fit in two sets of ankle exercises and one set of back exercises daily.

To top everything off, here is my schedule for the week: Monday: cat to vet, work in am, dr apt, job interview, meeting, Tuesday: work all day 8-5, Wednesday: work in AM, Walter's CT scan in pm, Thursday: Walter's procedure and an evening meeting, Friday: my father gets out of rehab after breaking his leg and I might need to go back into work. I also have to do some work from home and meet a friend for a walk. And I just saw the weather forecast which calls for snow/rain all week long.

I sneak in my little bits of down time here and there. I hope to get out for walk this afternoon to relax and clear my head after the doctor and before my interview.

I know the causes of crankiness and temper tantrums. I am working on dealing with them but when continuing health issues keep invading my life, my inner evil bitch comes through. Its hard to be relaxed, perky and cheerful when in pain or stressed. Somewhere I know my normal cheerful, relatively nice personality still exists but it gets covered up by everything else.

Sunday, February 21, 2010

The little discussions

The ones you have with yourself. Daily. Come on people admit it, you always have those little discussions. 'Did I take my pills this morning/afternoon/evening?' is the most common one. I do this one daily. I have two pill boxes that I have to remember to access multiple times throughout the day and then forget half the time if I did or not and go back and check to see if I remembered previously and then amaze myself at the frequency of my forgetfulness which is counterbalanced by the obsessive feeling that I had checked five times already. I do my best but if I was separated from my pill boxes at this point I would be doomed but they do solve my problem.

However, I have another series of little discussions daily. Did I do my damn exercises? I have PT exercises for my back that I do once a day and then for my ankle to do twice a day. These are also supposed to be done basically 12 hours a part so its not like I should do them once in the afternoon after forgetting in the morning and then two hours later in the evening and be okay. So yesterday I spent the day trying to remember if I did them. There is no little pill box to go check. I supposed I could write them down when I do them but then that becomes another level of remembering - I could do the exercises and forget to write them down and where would I be there? Same problem, just an added parameter.

Yesterday I know I did my ankle exercises at least once. I could have done them the requisite two times but cant be totally sure. I am pretty sure that I did my back exercises.

So today my goal is to take my second set of pills in a few minutes and then I can have some breakfast. Then I will do my ankle exercises and possibly my back exercises but I may save them for later. At lunch time is more pills and probably a walk this afternoon. Dinner time is more pills and ankle exercises. Bed time is one last pill and I am done for the day. Tomorrow more of the same. Then the days seem to blur together... And I cant remember and have the little discussions with myself.

Saturday, February 20, 2010

Don't think I don't want to know

So should your doctor dance around the nasty words or come out and tell you. Personally I like my doctor to just tell me what I have and what we can do about it. I was reading again (sorry, I'll try to stop sometime but please don't hold out too much hope here) and found that a recent study says that doctors often think they need to protect their patients from their diagnosis.

If you think about it, you weren't feeling right or your doctor suspected something and you had some fun filled procedure/test/surgery that results in a pathology report. Do you want your doctor to sugar coat the results or just come out and tell you? Personally I want to just be told. If they sent me for a fun filled adventure in the hospital, I already figured it out then that there might be something going on and have had some to digest this. Even if the doctor tells you 'we just want to do this to confirm and really don't expect to find anything' I'm already thinking worst case scenario.

Why am I such a pessimist here? Well, because I have gotten bad news a time or two already. At this point, there aren't too many more bad things they can tell me that would surprise me. My body seems to be falling apart years before it was supposed to and I know that these things aren't right and I have some good ideas of what's going on.

Now I will say sometimes I do get surprised. When I was told my mammogram needed a follow up, I thought no big deal. Then when they told me they found something, I still though no big deal. Then when they biopsied it, I started to know something wasn't right. But between my first mammogram and actual diagnosis was a period of about two weeks so I already had some time to adjust to the idea. The thoughts come to you when you are referred to surgeons and the like and given nice little piles of 'literature' full of details on chemotherapy and post surgical care.

Don't sugar coat my information or try to keep anything from me. Trust me, I can deal and want to know so I can understand what is going on. I prefer my doctors to tell me the 'truth, the whole truth, and nothing but the truth'. I ask direct questions and expect direct answers, so spill!

Friday, February 19, 2010

Wrapping up the week

Monday I didn't have a profound thought in my head. Today doesn't appear to be much different. I spent the week relatively busy and productive. I didn't have a lot going on medically. No news yet on my ultrasound - I think I'll call today for results. My left arm has been giving me some problems and I am going to see someone Monday to see what's going on. It might just be nothing. Which would be nice for once. It appears that every time something starts to go right with my body, something else starts to act up.

Next week is Walter's fun adventures. He gets a CT scan and his scar stretched out. I hope this clears everything up and the CT scan is clean. We need a little break from medical stuff.

However, on Monday is the cat's ultrasound (he can't be left out of our medical disasters). This could be more bad news. He had diabetes and it went away - yes really. But now they want to know if there is anything going on with his pancreas (a/k/a a 'mass' - and we are too familiar with that scenario) which would cause this reversal and his continued weight loss (even though he eats like a pig - and makes little grunting noises as he eats). We will see what happens but he is not a surgery candidate and I don't think we could deal with chemotherapy for a cat. He's 15 and seems happy so we'll just wait and see what's going on.

But in the meantime, its Friday and I'll deal with all that next week.

Thursday, February 18, 2010

Unequal distribution of medical treatment

Yesterday I said I was going to the dentist (and no cavities). Something I really hate and would prefer to skip but with my medical history (insert blah, blah, blah here) I try to be proactive about medical stuff as opposed to the what if scenario. I don't mean that going to the dentist is going to prevent cancer or something but oral hygiene is relatively important.

I posted this on Facebook (my cyber hangout) and said that I disliked the dentist but would prefer it to the gynecologist or oncologist essentially. I was surprised to find out the number of people I know who have skipped the dentist due to financial constraints. I just consider it a necessary evil and go regularly.(And I try to floss daily as well but that's another story.)

I also know others who's medical coverage does not cover all their necessary tests so they skip things that they shouldn't but do so out of financial need. Or people who have cashed in their retirement to pay for cancer treatments in hopes that they will be around long enough to need their retirement.

Personally, because of my preexisting condition (a/k/a thyroid cancer) I used to pay for my own health insurance so I could not be denied care if my employer did not offer Blue Cross. Then the laws changed here in MA so you couldn't be denied coverage due to preexisting conditions and I didn't have to do this any more.

While at the gym last week, I got caught up on my quality reading (People Magazine) while on the treadmill and they had a cover story about some Hollywood personality/model or something in her early 20's who had had 10 (yes TEN) plastic surgery procedures to enhance her looks. I am sure she paid for these up front. (There was a secondary story to say that her mother was less than thrilled at this behavior. See it pays not to tick off your mother - especially when national press is involved.) We can also look at the case of Michael Jackson and how many plastic surgeries he had - again, I am sure he paid for these in full. And what about his personal doctor? We hear about the shortage of some doctors and here are people with their own personal doctor?

This all started me thinking about medical treatment and its availability and cost. To me this is what healthcare reform is all about. We live in a country that has a great medical system but some people seem to get too much of it and some people seem to get too little. This is where the imbalance is. Why should a 50 year old be missing half her teeth because she couldn't afford dental care? Why should other employed people with medical insurance skip dental (or any other) care due to poor coverage? We should all be able to take care of the routine maintenance to keep us alive and in good health until retirement. But those who want cosmetic enhancements and can afford them, should also be able to get them provided they pay in full, and some of their disposable income could possibly go to help others in need through taxes.

Okay, its over. Don't ranting. I am tired this morning and my back hurts. Why does my back hurt (besides the normal reasons)? I fell asleep on the couch watching TV which isn't good for my back and then the cat sat on me with his delicate 13 lbs which didn't help. I had to wake up to go to bed, meaning I didn't sleep that well, and then when I did wake up this morning, the cat was sitting on me again. Back pain leads to crabbiness and I have to go work with nice cheerful people. Nothing like being around cheerful people when you aren't. Its annoying to say the least.

Wednesday, February 17, 2010

Breast cancer in the news

This morning's news has two articles on breast cancer.

1. There is an impending shortage of a necessary isotope which is used in 'procedures' to diagnose breast and other cancers. 2/3 of the world wide supply comes from one reactor which has been shut for repairs and will reopen in April. The balance comes from another reactor which is closing this month. There are talks to find another source in Poland but nothing is signed yet. A shortage means a return to older, less advanced tests. Clearly this demonstrates the need for market competition and multiple sources for specific items. Isotopes have half lives and decay which means they can't be stock piled in advance. Well, get those negotiations going with the third plant. We don't need a return to less advanced techniques.

2. Can taking aspirin reduce the chance of breast cancer recurrence? They say yes, well, maybe, well, we are not sure, possibly, but don't start taking aspirin daily yet unless you talk to your doctor. This is a classic case of 'we-don't-quite-know-what-we-are-talking-about-yet-but-it-sounds-good-and-we-think-it-eventually-will-lead-to-something-and-we-need-some-coverage-so-maybe-we-will-get-some-funding-for-research-and-eventually-have-a-concrete-answers'. Call me a cynic but I do feel we hear these stories about promising new research and then never seem to hear them put into standard treatment protocols. And what about me? I am on anti-inflammatories for my back and if this study is based on the anti-inflammatory properties of aspirin, am I getting a similar protection? Because of my anti-inflammatory, I can't take aspirin products currently.

Too much time in medical facilities causes cynicism and stress and scanxiety and surgical scarring and impatience and generally overall crabbiness.

But today is another day. We got another snow storm yesterday so I worked from home and went to the gym after going to my therapist. I also made a giant pot of soup - yum! This morning I get to go to the dentist and then to work. How fun. What a combination. No replies from my doctor yet on the ultrasound but its only Wednesday.

Tuesday, February 16, 2010

Trying my patience

I am trying to be patient. I was told at my neck ultrasound on Friday that my doctor would have the results in two or three days so I should hear sometime this week. Well, its Tuesday. How long can I wait before calling for the results? Hmmm.... I should wait until Friday to call. Actually, I should wait until they send me the results but I am not always so good at being the patient patient so I will attempt to wait longer. They are very nice to you when you call and ask for the results of a test that is used to diagnose cancer - they usually get you the results pretty quickly.

In the meantime, I do things to drive myself crazy. I did research online. I am not trying to become a doctor or anything. Its a secret plot I have against myself to drive myself crazy. All it takes is a tiny bit of scanxiety and a computer with internet access and I am doomed. There is even a term now called 'cyberchondria'. The fascinating little tidbit I discovered this morning is that thyroid cancer is slow growing and can take more than 10 years to become detectable. Well, 28 is more than 10 so I consider myself stressed - until I get the results from my doctor.

Today I am off to my therapist and then to work at home because it will snow and I no longer consider myself required to drive to work in a snowstorm. (Or work with idiots but that's another story.) I did go to work yesterday morning to avoid a commute today. As I was driving home, I was struck by home much I enjoy working with people who don't let their personal issues take over the workplace and are just plain nice. My new goal is to find a replacement job for the other job I left which meets the requirement of nice coworkers.

Anyway, I can no longer procrastinate in bed but need to motivate to get my act together and get out of here on time this morning. I will discuss my patience, or lack of it, with my therapist and develop a plan for dealing with waiting. This is a key skill of cancer people and one I still am not very good at. I am not sure any cancer patients are good at it either.

Monday, February 15, 2010

Not a profound thought in my head

Now some of you (my husband included) might argue that this is a regular occurrence and nothing new at all. Others might wonder, why I am attempting to write without a profound thought. But let me just say that life is not all about profound thoughts, spontaneity and small ideas get most of us through the day no problem. As a final note, do you remember the show 'Seinfeld'? It was about nothing. My life probably isn't as exciting as theirs on TV but it just reinforces my point that life is about nothing. Also, if I take time to come up with a profound thought, I will be late for work.

Today is President's Day, while I am still admiring the lovely roses my husband gave to me for Valentine's, I don't expect any more roses just because it is yet another holiday. (Tomorrow is Mardi Gras and I don't expect any more then either.) I had planned to take the day off from work and spend it together but my husband said he needs to go into work for a bit and there seems to be yet another pesky snow storm scheduled for tomorrow (and I don't drive to work in snow storms any more), I have changed plans and will go today. I hope to work for 3-4 hours and then come home.

This week is not too exciting. I have a dentist appointment - rescheduled from when I had a sore throat in January. I also see my therapist (conveniently scheduled during the anticipated snow storm). I have lots to do for work from home this week and just need to motivate myself. This means focusing on work for several hours tomorrow while it snows and rains outside.

Otherwise, we are both hanging in there. Walter goes back to the doctor next week and hopefully things will go well. My father continues to get better. The cat seems to be doing okay - if you can call begging for food normal - and goes for an ultrasound next week after which we will know more. But see a blog about nothing. And you read it. Now I'm off to work.

Sunday, February 14, 2010

Other people's problems

As previously stated, I try not to allow other people's problems to get in the way of my life. I have enough going on in my life that I don't have the time or energy to deal with other's problems. Usually.

Yesterday I went for a walk with a friend and another woman came up to us. She was clearly upset. She said she couldn't tell us much because she didn't want to get us involved but someone had hit her and she wanted us to take pictures of her black and blue eye with her camera. She had tried to take pictures of it herself at home and outside but they didn't come out. We took her pictures and wished her well and suggested she go to the police. We ran into her again in our walk and she seemed a little more sure of herself and thanked us again.

While walking my friend and I were talking and said that while neither of us our perfect and our husbands are not either, we are glad that we are not dealing with any kind of domestic violence such as this woman was.

My problems just seem to be continuing and unescapable. Once you develop chronic health problems, they don't just go away. You can't leave them behind. They continue to grow and snowball. One thing may cause another. You end up taking medications for the side effects of your medication. That is why I stick with dealing my own problems. And I wish the other woman well and hope she can get out of her bad situation before it grows and snowballs.

I don't wish to equivocate domestic violence with cancer or other health problems. Cancer is a lifetime health concern. Domestic violence, while seemingly curable, can be very difficult to remove from one's life. It can lead to stalking and other behaviors. It leaves deep emotional scars and trust issues. Neither one is something to wish upon anyone. And neither one is ever really going to go away. It would be nice if they did, but I don't expect them to.

Saturday, February 13, 2010

Donations and fundraising

A friend of mine is going to do the Avon 2 Day Walk for Breast Cancer this year. A fact that I find very admirable because this is something I can no longer do. A few other friends regularly do the Pan Mass Challenge. I know others who do the Komen 3-Day Walk as well. I volunteer for the American Cancer Society Relay For Life locally and have helped fundraise for other organizations. Also, I donate if asked by friends if I think it is a worthy cause in an amount I can afford.

Some of these events have relatively high minimum required donations and others do not. Why a minimum required donation? Well, let's just say there are fund raising events and some people need to be 'prodded' to make an effort to fund raise. I know of one event where people would sign up and then write a $20 check so they they have donated something.

However some of the minimums seem outrageously high. $4200 minimum for the Pan Mass Challenge, $1800 for the Avon walk and $2300 for the Komen walk. And participants have to supply a credit card to make up the difference between their fund raising efforts and the minimums as well as to pay for a registration fee.

In thinking about it, if you are the organizer of an event where the goal is to raise money, you need to expect a certain amount of return on your efforts. Events that are community events to build awareness, such as a local cancer walk, there may be less emphasis on fundraising.

Participants, who desire to help a worthy cause and are donating their time and efforts in fundraising and getting physically fit, should be appreciated for what they are doing. Donate to the ones you can. Or help them fundraise if you can't donate. Or help organize or volunteer at events.

Friday, February 12, 2010

But I'm still confused

Last night I was surfing online and came across a great resource - decoding your blood counts. I was so excited. This explains what the list they send me after blood tests mean. I looked around and pointed it out to my husband who agreed that he didn't really understand a lot of it either. In my rush to be enlightened, I pulled out my latest blood test and compared. I don't feel enlightened. In fact, I still feel confused.

Truth be told, now I understand better what the individual numbers mean but I don't really understand the big picture. What do my blood counts mean? Now, most are in the normal range which I can deal with but then there are the ones where normal is greater or less than something. Well, what does it mean if you are a lot more or less as opposed to only a little more or less? Then I read the disclaimer at the top of the page: "Interpretation of the results is strictly the province of a medical professional." Okay, so I guess I go back to being a patient patient and ask questions at my doctor's visits.

This morning I am up extremely early because I was so smart and scheduled a neck ultrasound for 730 this morning. A neck ultrasound is the new protocol for following up thyroid cancer. Apparently they can tell about some recurrences through blood tests but they also need ultrasounds for others. When I say new, it means that 20 years ago, they weren't doing ultrasounds as frequently. I don't believe I have ever had one before but there is a possibility I did back in 1981 before surgery. I can't remember. This counts as my first one essentially. I don't really know what to expect. I have asked some friends with thyroid cancer who have been through them and they all say its no big deal so I am not really concerned. The odds for thyroid cancer recurrence after so many years are small but it is still possible. Cancer is the gift that keeps on giving and there are cases of thyroid cancer recurring more than 40-45 years later and now these are part of the standard protocol for follow up - every five years. My real question is: what if it tickles? I'll just have to suck it up and deal.

Thursday, February 11, 2010

That other topic - death

Senator Murtha died recently from complications from gall bladder surgery - this apparently was a rare complication, less than 1 in 1,000 die as a result of gall bladder surgery. Its a relatively safe surgery. Wait, 1 in 1,000 - I don't think I like those odds when it comes to a medical procedure on my body. I will say I had this done in September 2008 and I'm still here. But still. I like to think surgery is safe and its meant to make you better and will keep you from dying. That's the whole point.

So I decided to do a little research. I found one source from 2002 which puts the lifetime odds of dying from medical or surgical care as one in 1,260. I did a little more research - hmmm I'm not sure I like this - the life time odds of dying of cancer are 1 in 7... I don't want to think about that one. But I think I prefer the odds of dying from asteroid impact as they are either 1 in 200,000 or 1 in 500,000 (apparently they aren't sure).

Finally I see some numbers that I like by looking at the Death Risk Calculator from Carnegie Mellon. It clearly delineates that I am not likely to drop dead anytime soon. I think the key word there is 'likely'. I don't know if there is a calculator out there that lets you put in your medical history and then find out your odds of dying. That's because nobody knows.

At one point I worked for a man who was a bit of a cynic (my personal opinion - but a very nice guy) who insisted on all employees being cross trained because of the 'hit by a bus syndrome'. If there is only one person who knows how to do something and they get hit by a bus one night, then what do you do? At first, I thought this was a bit pessimistic but if you think about it, no one knows when they will die. We all hope for a long and happy life full of good health, adventures, fun, friends and more. But we are hoping. We don't know. If you look at life expectancy numbers - that's only a guess. That's sort of an estimate - think of it as the same as the guy at the carnival who will guess your weight - just an arbitrary number.

So we are all going to die some day. But sometimes its these little medical bloopers (like cancer) that make us stare it in the face a bit more closely than we were previously. Part of getting on with our lives is learning to deal with that concept.

Wednesday, February 10, 2010


We do know the principle for computers 'garbage in, garbage out'. But it also applies to people. If you eat bad food, you are not treating your body like the temple it should be. And you will pay the price. I was brought up eating right. I usually try to eat right. I skip the junk food but sometimes succumb to popcorn based snacks - Smartfood or Cracker Jack (still has prizes but they are pretty lame these days compared to what I got as a child - temporary tattoos and stickers are nowhere near as cool as a little car or doll). Lots of fruit and vegetables. Sometimes I even spring for organic. I smuggle vegetables into my husband's diet regularly to the point that he accuses me of being unable to make something unhealthy. He tells me I always make whole wheat, vegetables, and nothing decadent. I even exercise five days a week. (I'm not saying that just because I do all this you should to and you will be healthy - I mean look at my medical history just to negate the whole point I am trying to make.)

There are countless books out on how to eat healthy and live a healthy life. But really the point is, society can't afford to keep patching up the damage people do to their bodies by eating badly. But the point is we all need to try to eat right and exercise. Mrs. Obama wouldn't need to target the issue of childhood obesity if this wasn't a problem. So eat your veggies and get moving.

I'm done orating for the day. I am very tired. My back doesn't like me. I have had a lot of pain for the last few days and didn't sleep well. This may lead to an appearance of my inner b*tch. But since we are getting a big snow storm today, I am going to work this morning and then will go to the gym and take a nap - the most productive thing to do when the choice is being crabby.

Tuesday, February 9, 2010

Difficult patients - surely they aren't talking about me

Now, I know I am perfect and could never be annoying! Ha! We are all guilty of this from time to time. I know I was a cranky b*tch at a recent doctor visit, when I attempted to eat lunch after my appointment. I do feel guilt about this as well. There is no reason to be cranky (hence one of the reasons I should try to destress my life) but we all know even the calmest person can lose it once in a while. This is because we are normal human beings (I know, there is no such thing as normal but bear with me here).

Yesterday I read this article that is titled 'When Doctors Find Patients Difficult' (I am constantly amazed by the number of medical studies going on out there). Then I thought, 'surely they aren't talking about me!'. They do accurately point out that there are two sides to every discussion. On the patient's side, you go to the doctor for lots of reasons: a check up, because you are not feeling well, for a follow up to a surgery/procedure/test, etc. If your reason is stressful (which can be any of the above), you may be a bit tense and short tempered understandably. Your doctor attempts to be patient and reasonable and have a normal discussion. After the appointment, they go on to the next appointment where they go through the same thing again and again. Is this stressful? I think so.

So what if the doctor isn't having a good day? They are human beings as well - they could have a sleepless night, fight with spouse, a flat tire, whatever. Add to that numerous patients in a row that are cranky, and you get burn out, high blood pressure, crankiness and all sorts of normal human reactions over time.

In reading the article, one of their pet peeves is patients who ask to be prescribed an unnecessary medication. Who is the doctor here? Just because your friend takes something or you saw it advertised on TV, doesn't mean its right for you. Let the doctor make the decisions. I see no problem asking if there is something else they can give you that might help your situation but to demand a specific medication? No.

The article also discusses the fact that older doctors are better at handling the stress and burn out. Is handling a difficult patient an acquired skill? Possibly but that doesn't mean we should take advantage of or take out our frustrations on our younger doctors.

So let's all be nice together and let the doctors be doctors and the patients be patients and attempt to work out things without causing stress on either side.

Monday, February 8, 2010

I really am working on this stress reduction thing

Yesterday was the first day of my planned stress reduction life style. I did some cooking in the late morning and then went for a walk. I spent the afternoon on the couch watching TV and went to bed early because I was tired. I remembered to take all my pills and found a balance board that I can use to strengthen my ankle that I am going to pick up today.

Okay, now here's the real story. I did some cooking because I had vegetables (sweet potatoes and butternut squash) that were about to go bad so I cooked them up and threw them in the freezer to be used over the next few weeks. I also roasted some red peppers for pizza topping and another batch of hummus that I'll make this morning.

Then my day went down hill. I conned Walter into going for a little walk with me. He turned back after a little bit and I continued with the intention of walking through the nearby conservation land as I haven't been back there for a few weeks. Well, there was some ice. And some melting. Meaning water on the ice. So there was a little slip and fall. Again. I'm fine. But I did spend the afternoon lying on the couch with an ice pack on my ankle and I took a pain pill. And I took a second one before bed.

I am relaxed this morning because of the pills which resulted in a good night's sleep. I also don't seem to have too many fall related aches and pains. But I promise not to walk on ice today. Yesterday my husband said to me 'promise me you won't fall today'. I'll try to stick with that one today.

Sunday, February 7, 2010

Call me slow but I will reduce stress

Today I am launching my reduce stress in my life campaign. I did mention it recently and have started a little bit but now I really need to focus on what is going on with me. I did a little google research (which isn't always the brightest thing to do because who knows the credibility of what is on the Internet) and found some reasonably intelligent reports showing that there are not clear links between stress and cancer but there are clear links showing that stress does nasty things to your body and makes you more susceptible to other ailments. Okay, so maybe stress wont give me more cancer but I would be happy to get rid of other medical ailments as well so I am formulating my plan.

1. Exercise more. I was getting a little wimpy about my exercise plan and frankly 30 minutes on the treadmill (with the latest copies of US, People, etc) is good, I think I need a little more. So I am going to walk more outside - because I go for a good hour. (I am also all caught up on Jen and Brad and Angelina etc - but am very convused. Did Brad and Angelina split up? Will Jen take him back or is she happy being single? And what will happen to the Brangelina children - they can't exactly send them back?) I will alternate walking outside with going to the gym where I will add tiny amounts of weight training to help my upper body. There are three machines that I can use that don't cause back pain - which is my signal to stop all activity.

2. I will take better care of me mentally. I may go back to my weekly support group for a bit (and because I missed my monthly group this week because of the wake I went to). I am also attempting to get back into my therapist before another month goes by. I will also try to do more of the things I enjoy - I have been so busy recently that I have books sitting around for weeks before I get past page 3 - me the bookworm to end all bookworms and I don't have time to read! I will also spend more time with the people I enjoy - something I haven't had time for.

3. I will not deal with stressful situations. I did a little research on this on coping with stress. The basic pieces of advice are to avoid the stressful situation, don't stress over things beyond your control (the weather), and work on coping techniques. My rules for not dealing with stressful situations means I will avoid nasty people and situations. I am not going to stress about things beyond my control - including other people's problems. And my coping techniques are covered in 1 and 2 above.

4. I am going to focus on feeling better. I am going to get a balance board so I can get serious about working with my ankle to avoid potential surgery. I am also going to work on my back issues. I am waiting for another few weeks for my new meds to see how they are working and then call the doctor. I also don't have many doctor appointments for the next few months. Late April/early May is when they all seem to be bunched. (This doesn't mean I won't be at the doctor between then - I have an ultrasound, dentist, and therapists in the interim.)

5. I will attempt to eat better. My eating habits have gone to hell in a handbasket recently. Currently my husband is not allowed to eat any fruits and vegetables. So of course, I am not eating much either. Salad, salad, salad. I will also make hummus again this week - nothing like hummus on pita bread with some lettuce and a slice of red onion. I need more veggies. So far today I did have toast with PB and an orange. And three pieces of bacon that were left - but now there is no more so NO MORE BACON. Yesterday I admit to having a tiny bowl of ice cream for breakfast because it was National Ice Cream for Breakfast Day but no more ice cream either!

So now this means I need to get started on this. In other words, I need to get out of bed and start moving and be (more) productive than playing online. Once it warms up for a bit, I will go for a walk to get some fresh air and exercise. Then I need to get caught up on a weeks worth of cooking shows on the DVR before the Superbowl this afternoon.

Saturday, February 6, 2010

Another reason why we need changes to health care insurance

But first, I would like to say today is Ice Cream For Breakfast Day. Skip the oatmeal, eggs, wheaties or whatever and open your freezer and grab a bowl.

Did you know health insurance companies deny one out of every 14 claims? Does that seem a bit excessive? Anecdotally I have also been told that some insurance companies routinely deny a huge number of claims. What is wrong with this picture? Now as a good insurance premium payer you must do your part before you expect them to pay. If your policy says they don't pay for certain things, don't expect them to. Read your policy before you agree to it and read it again every year. Assume that bad things might happen to you - which is why you have insurance in the first place. Then read everything the insurance company sends you. Ask questions where you are treated. Is this covered under my insurance? Who got preapproval? What do I need to do to get preapproval? Don't assume.

If you are denied, get to work. Don't sit there and assume the insurance fairy will fly through your life and fix things for you. Start gathering information to determine if you were fairly or unfairly denied and be prepared to fight. This example is a good start. If you are faced with a big medical bill, call your provider and ask about options in repayment or renegotiate the amount.

I hear more stories about people cashing in their life savings because they were uninsured or underinsured or grossly under estimated the potential out of pocket costs for their medical expenses. Its not just about what is covered but what you might potentially spend.

All of these are examples as to why health care reform is needed at some level. Why do insurance executives make so many millions while millions of Americans are forced into bankruptcy over medical bills?

Now I am going to eat my ice cream.

Friday, February 5, 2010

Belated World Cancer Day

Yesterday was World Cancer Day. It was also probably also save the penguins day and eat broccoli day. I'm just slow sometimes. I do know today is national wear red day to raise awareness for heart disease. I'll wear a red sweater if I have one that's clean... I'm not a big fan of these awareness things because I am not sure how much they really do. But I did find the article I saw yesterday that 40% of cancers worldwide are preventable through behaviors. Reduce sun exposure, drink less alcohol and stop tobacco use are the three key steps. So why me? I never was a sun person, I don't drink tons, and I never smoked a lot. They don't know what causes all cancers. They are saying this to focus on the causes they know.

Today I am launching the reduce my stress level campaign. Allow me to summarize my week: friend died, another friend's husband has stage IV cancer, awful work situation, fell and jolted back and wrist and knee, etc, facing possible ankle surgery, husband not healing well and facing additional procedure in a few weeks, father fell and broke his leg, and its only Friday so I am not prepared for much more. I resolved the stressful job situation by leaving it as I have tried for several weeks to resolve it with no success. I don't need to have the level of stress in my life so I chose not to work there any more.

My stress level is off the charts with everything I have going on and I am looking to reduce it as much as possible. There is no reason other's problems need to be mine. Except when others medical issues loom.

My husband just asked me to promise not to fall again today. I will try. By the way, the doctor wasn't surprised with my ankle that I did fall a few times recently. So off I go for a day of work today. I will try not to fall and hope I can destress a bit.

Thursday, February 4, 2010

So its not just me

I was beginning to think it was a big conspiracy and it was only me but it turns out Walter has the same problem - doctors with bad script writers. I went back to my ankle doctor yesterday expecting a recommendation along the lines of more PT/less pain, etc. No instead, it turns out she said 'my ankle is bordering on chronic' in its current state - meaning it may not get any better. In side my ankle is a harmless cyst (something common with gymnasts and ballet dancers and figure skaters), a chip of floating cartilage, and a partially torn ligament.

She recommends waiting for another three months and then seeing how it is. She also said to skip the exercises that have been causing any pain and focus on the balance exercises. (I was honest and told her I fell twice recently and she said she wasn't surprised because of balance issues caused by my ankle.) I may see some more improvement over that time and the warming weather may help as well. My options at that time will be: 1. live with it in whatever state it is in; 2. reattach ligament surgery which means six weeks in a cast, six weeks in a boot, and then rehab; 3. clean out cartilage which means two weeks in a boot, and then rehab; or 4. both options two and three together. I need a new script writer here. This is not what I wanted to hear. My ankle still hurts all the time. So what was my response: the very mature pouting phase that simply makes me feel better.

From there, I went and got Walter for his surgical follow up. He has been having some problems and wasn't feeling that great. The doctor took another look and said he needs to go back in and deal with some scar tissue issues. But he wants to wait another two to three weeks to allow for more healing before that. In the meantime, Walter has to live on a low fiber diet which means (and I quote) 'you can eat pizza and ice cream but no fruits and vegetables'. Well at least that was a nice thing to hear. But the additional procedure - which doesn't involve surgery or cutting but does involve sedation - is scheduled for three weeks from now. The part about waiting another three weeks and having to have anything else done were not part of the script we wanted to hear.

I ended my day by going to a wake. Which is worse - the wake or the funeral? I am going to the funeral today as well before work. Its going to be awful. She was too young.

Wednesday, February 3, 2010

What would you tell your insurance company?

Now technically, an insurance company is not supposed to know what is wrong with you. You don't need to call them up and say "I have cancer". I do strong suspect they can tell what is wrong with you by what kinds of tests/procedures/surgeries you have. But its not their business what the results of any of these are. They don't get pathology reports. They just get the bill. They are not supposed to discriminate against you.

However I am sure we have all heard the horror stories of people being dropped by their insurance after a cancer diagnosis, or refusal to renew a policy. I live in Massachusetts which has some very strong consumer protection laws against discrimination due to pre-existing conditions but still, I'm not telling my insurance company anything. They can infer all they want from my multitudinous trips to the doctor but I'm keeping my mouth shut.

Last year, they called me and offered a nurse to help me with any questions I may have. I was a little reluctant to talk to her but did in the end - mostly because I really didn't have any issues to discuss with her. I do know the insurance company has nurses on staff that will answer questions if needed.

This year my insurance company, Blue Cross, announced a new program called 'Blue Health Assessment'. They want me to go online and register and fill in all of my medical information so they can help me manage all my medical issues in one place. No, thanks.

Let me tell you why I am not going to fill this out anytime soon:

1. It would take me days to complete my medical history. I have probably had over 150 doctor visits in the past three years. Plus the previous twenty five years of my life with a few other medical misadventures. I don't have this kind of time.
2. Isn't this like giving secrets to the enemy? I mean they aren't supposed to discriminate and its not their business what is wrong with me so why should I tell them?
3. I'm lazy - see #1.
4. Am I getting paranoid about Big Brother - see #2?

Also, I think I do a pretty good job of keeping track of what is wrong with me myself. I have calendars and spread sheets and can look up and tell you when I had what done when. This is clearly outside my comfort zone so I'm not telling.

Tuesday, February 2, 2010

Profound thought for the day: Cancer sucks

Yesterday was further reinforcement of how cancer really is a sucky disease. A friend of mine died yesterday from breast cancer. She is the one I visited a few weeks ago. She has a seven year old and is a few years younger than me. She had triple negative breast cancer four years ago and a recurrence two years ago and has been on chemo ever since. She was in pain and on oxygen when I saw her. But perky and appreciated the take out Thai food we brought. I called her last week and we spoke briefly and I hoped to get over and see her this week. I am going to her funeral instead.

Also yesterday a friend emailed me who I have been out of touch with since before the holidays because of Walter's medical issues. Her husband has what looks like late stage colon cancer. They don't have a final diagnosis yet and no surgery so far. But things aren't looking so good.

To top it off, crabby co-workers that are unreasonable to deal with just need to grow up and get over it and get with the program. Hint: The world does not revolve around you and other people (i.e. our boss) makes decisions and changes things in rational manners to which you just need to adapt. Anyway, life is too short to deal with stupid people.

Walter also isn't feeling so well. He actually called the doctor and got his appointment moved up to tomorrow afternoon.

So ended a relatively horrible day. This morning I am up early so I can go to work for a few hours. Then off to my therapist - which I might need after yesterday. Back home for a few hours and then to my support group that I haven't been to in months and then a hair cut. Finally back home for dinner. I might even get to go for a walk somewhere in there.

Monday, February 1, 2010

But things are different with cancer

So why did I list all my stupid medication side effects yesterday? Well, here's the difference. When you don't have cancer, if you have a headache, a little dizziness, aches and pains, feeling tired, you don't think anything of it. You were on your computer too long, maybe are dehydrated, overdid it at the gym, didn't get enough sleep, etc. Unless its a migraine, you fall over from being dizzy, are in excruciating pain, or fall asleep at the office, you don't think anything of it. You may take some OTC medication and just ignore things for a few days. No big deal.

But when you add a cancer diagnosis (or two) to the mix, its not a headache, its a brain tumor. Its not dizziness, its a new weird cancer infiltrating your ear drums or another incurable ailment that will deprive you of your right to drive a car and go to work. Its not aches and pains, its your cancer has spread to your bones. Its not just being tired, its leukemia and anemia causing fatigue. Your mind travels down that road to hell which is filled with all sorts of dire thoughts which usually start with, 'I'm gonna die' thoughts. Not to be morbid or anything but cancer changes everything.

Living with a cancer diagnosis means learning to balance all these evil thoughts with a 'normal' life. (If you can define normal, please feel free to let me know. We are all weird in our own way.) You wonder why cancer people are more prone to depression and go to all those support groups and talk to other cancer people to keep our sanity.

Doctors and medical professionals don't help. Well, I mean they do help because they treat you and make you better and kill off cancer cooties. But they don't help when they say 'its probably nothing but with your medical history, we need to be sure. Blah, blah, blah.' Sometimes I feel if one more doctor says that to me, I'll scream. Nothing like getting that nice little slip of paper from the doctor to head for blood tests and a chest x-ray after your annual physical (does everyone else get an annual chest x-ray?) which says 'history of thyroid carcinoma' across the bottom. Its also printed on lots of the test results I get. In case I forgot. Thank you for that reminder. I wonder why they haven't updated it to say 'history of thyroid carcinoma and breast cancer'. (Actually I think they upgraded their computer system and are removing these helpful little reminders from their print outs.)

Cancer changes everything. Well isn't that a trite little statement. I prefer to think of it as 'cancer, the gift that keeps on giving'. Anyway, I don't need any reminders on my medical history. The little voices in my head keep reminding me of it. It is dizziness as a side effect. It is a normal head ache. The aches and pains are just part of my back issues. And being tired is the result of not sleeping due to back pains.

I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment. Howe...