Saturday, October 31, 2009

The point is right

I read this and thought (sorry, I need to do that sometimes) and then have some thoughts. It is very sad that anyone is reaching the point where their insurance has maxed out or just won't cover specialized drugs. This is wrong. If you have insurance, it should pay for your medications. That's the whole point of insurance isn't it? That you pay in case you get sick and then the doctor prescribes something to make you better and your insurance pays for it. I mean that is the whole reason we all get health insurance in the first place. No it shouldn't pay for things like a trip the ER for a sore throat or a bottle of tylenol for your headache but it should pay for the big deals in life like cancer, arthritis, heart conditions, etc.

But then I thought some more. I realize that development costs are expensive and that drug companies are seeking compensation for years of development overhead but if a drug costs thousands of dollars per dose, isn't this a problem? Shouldn't there be a maximum dose cost that drug companies need to adhere to or something? Let's do some math here. If a drug company develops a life saving drug that costs a billion dollars to get to market (which is actually a low figure - see this reference), they clearly want to be compensated some how. Which is clearly within their rights. They are there to make money (and save lives). But is it right to pass along these costs directly to insurance companies or patients and expect them to pay for it? I am not sure.

The problem is that the people who are receiving these expensive life saving drugs are often not working and very ill so they can't afford to pay very much out of pocket. But drug companies have huge costs of waiting for years of development through trials to make sure they are effective and not potentially harmful. However is it right to pass along development costs, not just production costs to a small group of patients? I am not sure what the answer is, but I think a few sick people can't pay for development of something that will eventually save the lives of many more. So I guess the point is right of the original article but the answer is still murky.

Friday, October 30, 2009

First some humor from my mother:

The American Medical Association has weighed in on the new Healthcare Reform Proposals as follows:

The Allergists voted to scratch it, but the Dermatologists advised not to make any rash moves. The Gastroenterologists had sort of a gut feeling about it, but the Neurologists thought the Administration had a lot of nerve.

The Obstetricians felt they were all laboring under a misconception. Ophthalmologists considered the idea shortsighted. The Pathologists yelled, "Over my dead body!" while the Pediatricians said, 'Oh, Grow up!'

The Psychiatrists thought the whole idea was madness, while the Radiologists could see right through it. Surgeons decided to wash their hands of the whole thing. The Internists thought it was a bitter pill to swallow, and the Plastic Surgeons said, "This puts a whole new face on the matter."

The Podiatrists thought it was a step forward, but the Urologists were pissed off at the whole idea. The Anesthesiologists thought the whole idea was a gas, and the Cardiologists didn't have the heart to say no.

In the end, the Proctologists won out, leaving the entire decision up to the assholes in Washington.
Yesterday was a long day. It started with PT (does your ankle hurt when you do a thousand reps with a 20 lb weight on your foot?) session. Then I came home and attempted to work. I didn't work. I ended up giving up on that idea and doing something good for me which was to go for a walk outside with a friend. It was a very nice day but now I have procrastinated myself into a deadline. Then we have house guest(s) for a couple of days. Since our house was in its usual pristine state, this required a fair amount of cleaning first. And because I dont sleep well these days (regardless of what the doctors tell me when they give me all these pills), I am always in a lovely mood. But one big gold star for getting through the day without eating any Halloween candy!

Today as a result of a semi-sleeping night where I was only up a couple of times, I feel moderately human and am off to a sales meeting where I have presentations and feel mostly unprepared. So I will go for the just wing it style... But then its the weekend!

Thursday, October 29, 2009

An interesting trip

I learned something yesterday. I was trying to be practical and plan ahead. As we were going to Walter's wonderful procedure yesterday where he hadn't been able to eat really for a few days, I thought he would be hungry and thirsty after it and want some water and a snack. I packed a bag with a bottle of water and some crackers as well as my book for the waiting process. At the last minute, going out the door, I grabbed his book as well so he would have something to read if we had to wait. We got there, checked in and sat down. He looked around for a magazine - of which there were none - so I proudly reached into the bag to pull out his book - and felt dampness! No, not dampness, sogginess! The water bottle was not sealed correctly and leaked its entire contents out. The two books absorbed almost all the water and were bloated, with covers warping... so much for being practical. But then they called his name (so he wouldn't have had anytime to read anyway) and I was left bookless for a two hour waiting period.

At Walter's suggestion I headed off to the local Barnes & Noble which is perfectly designed for killing time with shelves of new books and big comfy chairs. I found a few books to buy (after swearing recently I would reduce my book addiction/purchase budget) and then went off to the mall to find something for Walter to snack on after I picked him up. As I was entering the mall, there was a little sign. There is now a high end consignment store in the mall! How exciting! Off I went to admire/try on affordable clothing! It was quite a fun interlude. And I found cookies to bring with me on the way back to the hospital.

This trip required TWO trips to the parking garage filled with OMWAHs. The first one wasn't so bad. I think we got there before they woke up or something. But when I arrived the second time, the cars were backed up out through the entrance as people were waiting for others to back out of parking places... If someone is walking across the parking garage and there is a line of cars behind you, don't wait for them to find their keys, fix their make up, and then start the car and back out of their space! Go up to the next level! There are lots of spaces up there! (But because I was stuck in the line of cars, I did wait for someone to get in her car, fix her hair and back out of her space... And I got a good space near the stairs as a result.)

Now the books are drying on the heater... I checked last night. The skinnier one of the two will take another day at least. The other one, may take a few days...

Also, yesterday I attempted to meet a friend for a walk. It was 45 and pouring rain so I ended up on the treadmill at the gym instead after coffee. Today I am off to PT this morning and then maybe a walk before work. I was also supposed to work from home yesterday and this morning. Some how I will fit some in. But I have to leave in 15 minutes...

Wednesday, October 28, 2009

A Little of This, A Little of That

And a little ponytail!!! How exciting! You have no idea. I used to have long, pre-chemo hair that I wore in a ponytail. Now yes I was thinking I was getting to old for that. My hair has been growing out since chemo ended, Dec 2007, and I get it cut every two months - enough to keep it shaped but spaced enough to allow it to grow. Last night, while watching TV, I was playing with my hair and realized I had enough to make a ponytail again. The whole point of being able to do this is to pull my hair back out of my face or off my neck if I want to. Now that I can (just barely), I am happy.

Yesterday I was (wasting time) online and came across a new blog from the Mayo clinic. I do think they have great medical information and advice and they are one of the sites I go to with medical questions and I subscribe to their newsletter. They just launched a new blog called "Living With Cancer". I guess this is a no-brainer for them but perhaps they should get some real insight into it. First of all, its written by someone who doesn't have cancer. She is a public affairs consultant who helps Mayo clinic patients with their cancer journey. But it does not appear she has had cancer so she is writing about something she doesn't have first hand knowledge of.

Nothing against her, I don't know her but I think this might be a key attribute to a successful blog. I wrote in a suggestion they get guest bloggers who have had cancer to contribute. Now perhaps there is something to be said for detachment and inability to see the woods from the trees if its written by someone in the midst of cancer treatment and the not so little cancer rollercoasters that become a way of life for us lucky people. I think there are enough of us cancer bloggers out there that they could get some contributions.

Also, I tried to subscribe to the blog but couldn't find the feed so I have to manually remember to go back there to read it. I did sign up for it but that also means I will need to sort through my overpopulated in box to find it. But I do plan on reading it for now. I'll see where it goes before making any judgments.

Today I am not the patient. My husband has a colonoscopy - just a regular you are over 50 so you can't hide from it any more procedure - about which he is over joyed. I have reminded him about Dave Barry's column on colonoscopies (which I recommend for anyone who has to have the procedure. But he seems to be losing his sense of humor about the whole thing. So this morning, I will drive him to the hospital and then have a cup of coffee as I wait for him. After that I will make his favorite dinner - pizza - and his sense of humor will be restored.

Me, I don't have a doctor's appointment for a couple of weeks. I do have twice weekly PT for my ankle (or let me bend and pull your ankle a few times and tell me if it hurts) for a two more weeks. Then I actually switch to the weekly doctor appointment - therapist, oncologist, back doctor, ankle doctor all in a row. Can't wait. But in the meantime, I am not the patient today so I will enjoy it.

Tuesday, October 27, 2009

On Getting Medical Advice

There has been a bit of controversy recently in the media because Suzanne Somers is the latest in a line of celebrities to come out and bash conventional medical for its cancer healing abilities and promote alternative medicines. She even wrote a book about it. I will say up front that I have not read her book and have no intention of doing so. I watched part of the controversial interview with Larry King. I did read the article earlier this year in Newsweek on her appearance on Oprah and I did read this article from the New York Times and another one which talked more generally on the subject. She has also described herself as a layperson on the subject. I am not a medical professional but merely a patient or person dealing with cancer myself. That being said, now I will bravely stick my toe into the conversation.

First, let's start with the statement that 'every person's cancer is different'. What works for one with seemingly identical diagnosis may not work for another. Its not just the cancer that is part of the equation but where it is exactly, spread, node involvement, tumor size, type, age, health, and general mood of the patient, etc. These all are part of the equation of what is the right course of treatment.

Second, modern medicine is based on many years of trials and tests and works at prolonging life. What is considered the best protocol at the time is usually the one which has the best results in prolonging life.

Third, alternative medicine is based on a few to thousands of years of usage. Herbs, acupuncture have been around for a while, some new modalities for only a relatively few years. They are used because they make people feel better and have had some proven success.

So how to choose? You go to a doctor and they prescribe conventional medicine. You go to a naturopath or other healer and they prescribe a different route. The route you choose is the one in which you are most comfortable. Its your body and your choices. Educate yourself and make your decisions - if you choose to use a book by a layperson as your medical reference, that is your choice. The only important thing to do is to communicate to all your caregivers that this is what you are doing and what you are taking so that nothing negates the other. For example, a reiki session just before chemotherapy might not allow you to relax as much as one the day prior or the day after. Or, another example is the fact that St. John's Wort has been proven to interact with many medications, including birth control pills (which can result in a oops 9 months later).

So communication is key. I know I spend a lot of time telling my caregivers what I am doing. Even if you tell your doctor on one visit that you went to a naturopath, remind them the next time so that they keep the big picture of what you have going on in mind. Its your body and your choices but you need to make sure you make your decisions.

Monday, October 26, 2009

The Forty Year War

I've been reading again. Sorry. I do it regularly. Someone referenced an article in the New York Times recently and I never found it but I found another that made me think (something else I shouldn't do regularly according to my husband). This is part of a series in the New York Times on the Forty Year War against cancer. Now stop right there. Forty year war? Can they put a number on it because the end is in sight? And war? Its not a war, its a continual search for a cure.

In reading this article I had a few thoughts:

- First of all, I disagree with the statement that cancer people talk about how they found the tumor/growth/mass. We talk about all sorts of things like what drugs we are on, recurrences, treatment options, opinions on doctors and other medical personnel, the weather, politics, sports, children, parents, friends, work, school, etc. We can talk about cancer to people who really understand but we also talk about life. We try to give ourselves a break from cancer every second. The all cancer all the time channel really sucks and is stressful so real life is a nice alternative.

- You will notice that several medical personnel who thought they knew it all realized when they were diagnosed themselves the true significance of a cancer diagnosis. You don't get it until its you with cancer. There is a fine line between having cancer and helping with cancer. I interact with a lot of people who are very caring and are doing their best either as caregivers, volunteers for cancer groups, or are medical personnel. They are helping and should be appreciated. But once you cross into cancerland its another world that you can't understand until its you.

- With cancer people, there is a line to be drawn - when do you stop treatments? I mean how many times do you go through the 'there is one more thing we can try'? By the way, the only one to decide this is the person with cancer. On one hand, its your life we are talking about but then there are things like quality of life to consider. Can your body cope with more treatments in a humane manner? Strong cancer treatments can be worse than the cure. Look at chemotherapy, it makes you really sick to make you better. On the other hand, when do you decide enough is enough?

- Finally, go back and read the last sentences again. How can they put the number forty on it if they aren't even close?

Sunday, October 25, 2009

Pink things I cannot stand

I am collecting a list of 'pink' things I cannot stand this month, which I have renamed Pinktober. Its not hard to come up with a lot of them.

- Pink prescription bottle caps from Walgreens. And the pink clashes with the brown bottles. Why just pink? Why can't they come in a whole rainbow of colors so you can remember which bottle is which without having to pick up each one and read the label.

- Pink Snuggies. You know, 'The Blanket With Sleeves' that was all the rage last winter during the rising heating prices? If you go to their website, they still only exist in red, blue and green, but I saw pink ones in a store yesterday. (I will say, I saw an ad on TV for snuggies for your pet...) A bright pink snuggie will force you to redecorate your living room so you don't clash with the upholstery - now there's a way to fix the economy - sell pink snuggies, force people to purchase new furniture, it would be better than cash for clunkers!

- Breast cancer ribbon BAGELS! (No they weren't pink but its the idea that makes them fit here.) Yes, they had cherry vanilla bagels that were not round with a whole in the middle but ribbon shaped. I met my cancer friends for coffee and every one asked about them because of the sign in the restaurant but only one person got them because they were such a yucky flavor.

- Entire displays of pink merchandise - why can they put pink on things and expect them to sell? I was in Bed, Bath, and Beyond yesterday and there was a giant display of pink stuff. I looked carefully. Most of it was junk. I do admit that a couple of years ago, I purchased a pink handled chopping knife - and it is a really great knife. I bought it because it was on sale after Pinktober and got a great deal on a good knife.

Speaking of which, what happens to all this stuff after Pinktober ends? Does it end up in dollar stores or the 80% off rack like unsold Christmas merchandise at the end of January? Well, today is the 25th which means there are only 6 days to go in Pinktober, which will be saturated with Halloween so I might survive.

Saturday, October 24, 2009

Call me confused

I am confused. Probably yesterday I was confusing as well because I was pretending I could function on minimal sleep. I did make it through the day with all sorts of adventures. But this is different.

The other day someone I know on Facebook posted that five years out, her doctor has told her she is cured from her triple negative breast cancer because she has had no issues. See this is my confusion. How could a doctor use the words 'cure' and 'cancer' in the same sentence other than to say 'we have no cure'? That's the whole point. There isn't a cure for this lovely ailment. I don't want to burst her bubble but I would be running fast away from that doctor to a good doctor who would tell me the truth.

I actually think it was very irresponsible of the doctor to tell her such a thing. But I wasn't in the room to hear the exact words of what the doctor said so perhaps I shouldn't be so quick to pass judgment. I mean maybe she heard 'you are cured' when what the doctor really said is 'you have no evidence of disease'. These are very different things. If you have no evidence of disease, they can't find any of those little sneaky cancer cooties hanging out anywhere forming new tumors and growths. But that doesn't mean they aren't there - because they are sneaky.

But enough cancer business today. Actually, I am meeting some cancer friends for coffee where we will talk about chemo, radiation, hair, scar tissue, coping, recurrences and all sorts of fun things. But it will be fun.

Yesterday morning I did take half an antidepressant as I ran out the door and didn't not mutate into anything substantially out of the ordinary - or I am sure my husband would have informed me. Nor did I have any panic attacks, hallucinations, dizzy spells, or any of those things I was warned about. We went out to dinner in town and then to a comedy show. It was a nice evening and it was nice to get out. I even got some sleep last night which means I more closely resemble a human being today.

However, one disconcerting thing did happen yesterday. I got home and there was a message from the oncologist's office, with whom I have an appointment in two weeks. The message said they needed to reschedule my appointment wanted to know if I can come in on Wednesday. Well, which Wednesday? I tried to call back and finally got a real person at 4:58 pm (and they close at 5) who said she had no idea but to call her on Monday. Is my appointment being moved up to this Wednesday for a reason? Do they know something I don't know? Oncologists need to be very clear about these things so us cancer people don't start to think of all sorts of bad things... But I would never do that. I would NEVER drive my self crazy trying to second guess the mysteries of an oncologist. Ha!

Friday, October 23, 2009

How (Not) To Have A Good Night's Sleep

1. Carry giant kitty out to car, with wrestling match to get into carrier, and take to vet.
2. Go to meeting and sit in big comfy chair for 2.75 hours
3. Walk on beach at low tide in loose sand so back hurts
4. Go to other job for 6 hours
5. Pick up prescription for new anti depressant
6. Eat dinner
7. Read warnings list for new drug
8. Take back pain med and attempt to go to bed.

I did not sleep well. I dreamt I was having the side effects listed for the new med, even though I didn't take it yet, and was arguing with people and being evil. Its a very (un) reassuring list:

Diarrhea, dizziness, drowsiness, dry mouth, increased sweating, lightheadedness when you stand or sit up, loss of appetite (that one might not be so bad), nausea, stuffy nose, or tiredness. (I am not sure where stuffy nose fits into the mix and frankly I have had enough nausea in my life at this point not to want any more.)

But wait there's more. Call your doctor immediately if you experience: bizarre behavior (my husband is ready to call now before I take it), chest pain, confusion (will anyone be able to tell?), decreased concentration, decreased coordination, fainting, fast or irregular heartbeat, hallucinations, aggressiveness, impulsiveness, irritability, hostility, exaggerated feeling of well being, restlessness, or inability to sit still, red, swollen, blistered or peeling skin, seizures, severe or persistent anxiety or trouble sleeping, severe or persistent headache, stomach pain, suicidal thoughts or attempts, tremor, unusual bruising or bleeding, unusual weakness, unusual or severe mental or mood changes, vision changes, or worsening of depression.

First of all, isn't an anti-depressant there to help relieve lots of these symptoms so clearly that would be that its not working. Anyway, I had all sorts of weird dreams, did not sleep well, and have a very long day - from a 730 am PT appt to tickets in Boston to a comedy show tonight. I am sure my inner evil bitch will appear at some point.

But here's yet another article on the effects of depression on cancer people which is simply further proof that it is not all in my head.

My day yesterday started with back stress. In order to take the cat to the vet, we need to operate in stealth mode and put the carrier out in the car the night before. He saw me put it out there yesterday morning so when I picked him up, he was having none of that. A battle ensued. I won but my back hurt. When he is determined, he is determined. Now he is much better according to the vet, and 3 months behind in his shots, but still on insulin. He got behind on his shots because 3 months ago, when they were due, he was so sick, we weren't sure he was going to be around long enough to need them. But now he is late. Next visit, lots of needles for him.

But now I am late for PT. I will bravely take 1/2 an antidepressant and see what kicks in as I run out the door. Bye.

Thursday, October 22, 2009

There is Pink Everywhere

Last night I went out with a friend briefly after work. We picked a restaurant we often meet at because it meets two important criteria - it is near her work and on the way home from my work and we can get chicken nachos with no jalapenos that we like and have been ordering for more than 25 years... If we meet some place without chicken nachos, we ask them to make them specially. It also only took us about 10 years to remember to say no jalapenos but we finally remember now.

Anyway, she's an old friend since junior high school and we get together to bitch about the normal things - husband's, work, her daughter, medical ailments - hers, mine, her mother who is very ill, what is our strategy for our upcoming high school reunion, etc. All those important things in life.

Unfortunately the restaurant we chose last night, had all sorts of pink stuff for breast cancer month. They were selling t-shirts and other crap and had a table of stuff on display on how to donate. I was glad to see that it was even very clear that if you bought some item for $5.00, $3.00 would be donated to breast cancer research (but they weren't as clear with the other items on how much went to research - you have to be careful with this.) They also had a glass jar count collecting people's spare change for breast cancer. Its amazing how much you collect that way.

Our waiter was attentive and nice so when I picked up the card on our table describing the event, he was quick to rush over and ask if we wanted to buy a t-shirt or something. I said you won't catch me buying anything. My friend said 'she's a survivor' and the waiter wanted to shake my hand. After he left, I said I really dislike the survivor label, and battling cancer descriptions that people bestow on us. I survived a bunch of doctor appointments. I am not battling anything really. I just live with cancer and assorted medical ailments and two things most importantly: I am a person, a human being and I am still here. I think she understands what I mean.

We also talked about never giving up hope and how that is one of the most important things to remember. Never give up hope for a cure for cancer. Never give up hope for a cure or treatment for your cancer, something to relieve the pain, one more chance to see the world.

Wednesday, October 21, 2009

GRRR!!! Doctor Schedules! GRRR!

Its not fair. I had a follow up back doctor apopintment secheduled for my back as a three month follow up to my August 6th appointment. It was on November 20th, which in my scheduling/counting skills puts it at 3.5 months. I am usually not that picky about these things but was waiting for it. Well, they postponed it because the doctor has the nerve to have a personal life? Evidently some family issues are taking him out of the country. I don't care if its a well deserved vacation or family emergency and firmly believe that everyone needs some time off.

But if the truth be told, I don't want to wait for another 2.5 weeks until December 8th for my next appointment so I am taking the very mature attitude and whining about it. Hey, its my blog. I can whine if I want to. If you don't like it, you can just suck it up and skip to the next paragraph or something. I will have to start calling every week to see if he has a cancellation that will fit into my overscheduled life. I like to schedule my life around my doctor appointments, its much easier than shifting anything around to get the only appointment that they have for the next 8 months.

I mean I am trying to juggle a few jobs and have 2 appointments a week for the next four weeks (mostly PT) and one a week for the following two weeks. Then I get a week off and then have a week with two appointments and then its almost the holidays. Very sad. But whining is one of the things I do best. Except when I am crabby and my inner evil bitch comes out (she is not the same as my inner size 8 who has been missing for quite a while).

Yesterday I did meet with the meds doctor and she wasn't what we call 'warm and fuzzy' so I am not sure how this will work out. I can always switch doctors if I decide I don't like her. The point of the appointment was to decide if I need an antidepressant because of the continual medical lemons that keep running into my life. She looked at my giant list of prescriptions that I currently am on. She looked at the list of anti-depressants which have been found to react against Tamoxifen. Then she gave me a prescription for something that I have since found interacts with the prilosec I take for heart burn from my hiatal hernia... I will talk to the pharmacist and perhaps just skip the prilosec for now. I go back and see her in a month too.

Now today, I have to get my butt in gear because I will be late for work. I have a long day today. And am meeting an old friend after work for a drink - which will be soda water for me these days.

Tuesday, October 20, 2009

Living in la-la land

I sometimes feel I am living in la-la land - without a care in the world, not worrying about my next ailment coming down the pike at me. At this point, I know there will be something else but I can't bring myself to worry about it at this point becuase I have enough crap to worry about now.

I went to the conference this weekend, and at one of the sessions I attended a woman was there who was a diagnostic radiology (that would be the x-ray/PET/CT scan department)nurse and the subject came up for what can you find out in various tests and when to have them and all sorts of fun cancer topics. (I must say we don't sit there moaning about our latest medical blooper, but usually try to laugh them off. This is a crowd that has been through it all, so there isn't much we can't find humor with.) Anyway, so after the session, I asked her if bone mets are detected in a PET scan.... drum roll... they are not. You need a bone scan. I said I had a spine MRI in January and she said I probably need a bone scan to be sure because the spine MRI only looks at your spine. And x-rays don't pick up all types of bone mets. So I am not worrying about this but have just put this on my list of things to talk to my new oncologist about in a few weeks. Its gotten to a point that it might be nice to know what is going on with my back so if it was something like that, at least I would have an answer.

Yesterday I was reading again (I should stop this, it gets me in trouble) and found this article on CNN about underdiagnosed health problems women have. This will also be another topic of conversation with my doctor in a few weeks. It has been suggested that RA might be something else to look at. Someone at the conference suggested I be tested for fibro myalgia but the more I read about it, the less it sounds like me. But I am not worrying about any of this.

What I am worrying about is my missing back doctor appointment. It has mysteriously vanished from my list of scheduled appointments. The problem is if was canceled for some reason, it may take another couple of months to get back in to see him. Grrr... I want answers. I will be pushy (and try to contain my inner evil bitch) but I will call and be assertive.

Anyway, I have managed to massively overschedule my week. I need to leave here in 45 minutes, work until 230, meet with the meds doctor to figure everything out, come home do some more work, and then have dinner. But I did get a decent night's sleep so that's a big step in the right direction. But now I am late so must go.

Monday, October 19, 2009

Conference redux

I did enjoy the conference (Thyroid Cancer Survivor's Association) this weekend but it was tiring. And conferences make my back hurt - now that's not news I know but I thought I would slide it in there anyway. Everything makes my back hurt these days. This makes me cranky, whiny, crabby, and my inner evil bitch may come out with the least provocation. Anyway, the conference was great and I am glad I attended. I learned:

- Thyroid cancer people (again I won't use the S word even if its in the name of the association) don't like being told that their cancer is the good kind any more than breast cancer people do. There seems to be a general misconception out there that if you get cancer and its in something they can cut out, or otherwise rid your body of, of you easily, its a good kind of cancer and not as stressful. Let's just say cancer is cancer, people are morons, and they have no cure for cancer or morons. People die from thyroid cancer (see Chief Justice Renquist for example) just as they do from any other kind of cancer. There is no such thing as a good cancer.

- I attended a session on chronic pain management that was taught by an instructor at Harvard Medical School. He did go on and on a bit about opiods and their use for chronic pain but also taught me a bit about dealing with constant pain vs. break through pain (I get both) and how to handle their treatment. He did mention something about how cancer patients with pain issues should be tested for fibromyalgia. After that session I asked him directly about this and he said that yes if I have pain, I should be tested. So being the informed patient and not knowing anything about fibromyalgia, I went home and looked it up. It doesn't sound like me so I am going to cross that ailment off my list for now but perhaps will mention it to my doctors in an upcoming visit. After all, he went to medical school and I didn't so maybe he knows more than me.

- I attended a session on coping with a cancer diagnosis. It was led by a panel of people who are employed at a local rehab hospital. One was a nurse who is a director there and just was diagnosed with cancer, one who manages the volunteer program, and one who is a non-denominational chaplain at the hospital. I wasn't as impressed with this as it did go on and on but I did get two messages out of it: 1. Never give up hope. I completely agree with that one and they even recommended a book I will have to go check out. The Anatomy of Hope by Jerome Groopman. 2. They also recommended prayer as a way of coping. But they assumed everyone was religious. I don't really have much to do with religion and you can probably consider me an atheist/agnostic. Prayer isn't going to do it for me. But I have seen many who use prayer and bring more religion into their lives when faced with adversity such as with illness and it works for them. I guess, do what works for you.

- There was a session on working with doctor-patient relations. Apparently, I do the right things by bringing in written down questions and asking them. Well, usually. Sometimes I forget to ask them. I am not as good at writing down the answers but I will have to work on that part. Chemo brain allows me to forget things quite rapidly.

- Another session I attended was on dealing with multiple medical issues at the same time. That was interesting as it was more of a round table discussion where we all participated. One participant was a pharmacist and he was able to add some helpful bits about managing medications and dealing with pharmacies - your pharmacist is a great and often very underutilized resource. I was reminded that while I am privileged with having a million ailments these days, there are other people who are worse off than me. I guess I just whine better and assume that I am the center of the universe.

I attended a couple of other sessions and volunteered a lot - this meant helping people get their badges and information packets and selling the souvenir stuff they use for fund raising. I am now the proud owner of new sets of daily pill boxes (because I need more than one so I stop messing up my pills) and a Thyca tote bag which zips shut - a nice added feature. They raffled off a bunch of things, which I actually won 3 of: a baby gift basket (that I am donating to a charity), some home made soaps, and a book: Chicken Wings for the Beer Drinker's Soul which I gave to my husband. I also met some great people and had a good time. My back thinks I should have attended one day and not three but it will just have to suck it up and get over it.

Today I am meeting a friend for a walk and lunch before going to work and after working from home. We actually started planning a walk and lunch in July but between complicated schedules, we finally are going to get together today, provided the snow has melted (yes it snowed here yesterday). Even if we don't walk, we will have lunch and catch up.

Sunday, October 18, 2009

Don't have time to blog

I really don't. I am running late. I was going to blog about everything I learned yesterday but will have to rely on Chemo brain to remember it tomorrow - that may n ot happen. You may just have to trust me. But if I didn't blog, would people think I dropped off the planet? I blog every day. Do people worry if I don't? I don't know so here is my blog that is not a blog. More tomorrow.

Saturday, October 17, 2009

I Should Have Figured This Out Before

Thyroid cancer is different than breast cancer. Why didn't I learn this before? At breast cancer conferences and groups we talk about chemo and radiation and reconstruction and surgery. At thyroid cancer groups, we talk about recurrences, life time of vigilance, and different types of thyroid cancer. There are several types of thyroid cancer out there which are treated differently and have different implications. Some of the more aggressive ones are basically untreatable.

If you have thyroid cancer, you lose your thyroid (or most of it) and are on synthetic thyroid hormone for the rest of your life. While this is a fairly minor medication, if you don't take it, you will die (as some one summed it up so nicely yesterday). Also, you get to spend your life getting your thyroid levels checked regularly and releveled off - some people never level off and are changing all the time.

I am meeting quite a range of people - from a 10 year old girl who had thyroid cancer a few years ago to Mrs. New Jersey 2008 (complete with her sash) who also had thyroid cancer. And its part of her platform. (She is very tall, wears high heels and is probably a size 2 or 4. But she also is very nice.) They were also giving out these pins and some stickers for which is a good organization if you are looking for one to suppport.

Today I am off to the conference again. I will volunteer but I will also attend such interesting topics as 'Pain Management and Palliative Care: Clinical, Legal, and Ethical Issues in Managing Chronic or Severe Pain' - I think I know alot about this - and 'Patient/Physician Relationships: Effective Communication and Coordination' - or how to be a better patient - and finally 'Roundtable: Coping with Multiple Health Issues At the Same Time' - I think I want a definition of multiple. Anyway, I will prepare to be educated again.

But more importantly yesterday's news is that we have hit our out of pocket maximum on our health insurance this year. This means we don't have to pay for anything for the rest of the calendar year for medical expenses. This is great because I have so much PT and several doctor appointments coming up. Actually its kind of nice that it took more than 3 months to reach this point this year as it has in previous years. In a weird way, its saying I am healthier.

But I have to go hop in the shower because our new living room furniture is coming sometime after 8 am. And, Murphy's law says, if I am not dressed at 8, that is when they will arrive.

Friday, October 16, 2009

Can't Come Up With A Title

I am not sure how to title today's post - Ending Years of Denial, Off to be Labeled, or Volunteering Again. Today (and tomorrow and Sunday), I am off to the Thyroid Cancer Survivor's (hence the label - I hate that word) Association's annual conference which is being held in the Boston area for the first time (ending the denial). I will be a volunteer - which means I will sit at a table talk to people about things that I don't really know about. I will also get to attend some sessions on fun topics such as 'Long term survivorship' (I better be in that club after 28 years even if I hate the word), 'Coping with Multiple Health Issues (maybe I could write that one), or 'Ask A Doctor: Managing Thyroid Cancer for those diagnosed before 18 or as Young Adults' (I may be too old for that one). I am sure I will get a yummy bag lunch each day and my back will hurt by the end of the day (but wait, it hurts at the start of the day so I guess there won't be any difference).

In some ways I am looking forward to this. This is the lost ailment for me. I really don't know much about it, can barely tell you what kind I had (papillary and some follicular if I look it up), and much about long term effects. I do know it has meant a lifetime of synthetic thyroid hormone and annual doctor visits with a chest x-ray for a thingy in my lungs and the statement 'with your medical history, we have to be sure' repeated over and over again before every test/exam/surgery/procedure. Maybe I can learn more about living with this... And long term issues and recurrence stuff - the warm fuzzy side of cancer again.

Anyway, it should be interesting. And will top off an interesting week. The cat went back to the vet (let's talk about his ailments, rather than mine for once). His diabetes is getting better. He seems to be producing his own insulin again which means we lower the dose to one unit twice a day and go back in a week. If he is stable, no more insulin - even though we just refilled the $100/bottle. But they also think he might have high blood pressure because his eyes are dilated. He has had this problem for a while with his eyes but they can't really check his blood pressure (what do they do have a miniature cuff for him?) because he is so scared while at the vet. How do you treat high blood pressure in a cat? Take him for a daily walk to give him more exercise? Change his eating habits - no more snacks? But he is getting back to normal.

Now my week included a visit to the physical therapist which was actually a positive medical experience for me for once. The PT thought that my ankle has healed really well, I have exercises (3 sets of 20 twice a day or 2 sets of 30 - I can't remember), and will go back for about 3-4 weeks of twice weekly visits and he thinks that's all I will need. I will add that physical therapy makes my ankle hurt.

However I went to see my therapist who is a psychologist and she is concerned about me. The lovely Lyrica can cause some anxiety and depression issues so she wants me to talk to a medication specialist about all the stuff I am on. She took me to the triage room to set up the appointment. It was the secret room in the back... with one really weird patient in there who was a little scary... and they scheduled me to meet with a psychiatrist who specializes in medication next week. They wanted me to wait around to meet with someone that day but I really didn't have time (and the other guy was creeping me out). So let's see am I anxious and depressed about non-stop medical issues and they give me medication (which has not yet kicked in to help my back) that can compound these emotions? And I already take a lot of other medications (could stock my own pharmacy) Hmmm... How would you feel?

Well, right now I feel like I am late. I have to leave soon and have not yet taken a shower or gotten dressed. But I have eaten breakfast.

Thursday, October 15, 2009

Blog Action Day - Climate Change

Today is Blog Action Day ( where bloggers around the world were asked to raise awareness about climate change. I participated last year where the topic was poverty so when I was reminded about it this year (they send out reminders so we don't have to remember - very helpful for us spaceshots with chemo brain) I was quick to reply yes. I wasn't really sure about what I would write but thought I would figure it out sooner or later. Well, it was later.

Yesterday they reminded me again and I decided it was time to figure out what to write. I couldn't think of anything. I am not a scientist or economist who can make all sorts of predictions or write authoritatively about anything hard core. Nor do I read enough about it to really be that educated. I know the polar bears are losing their ice floes and I know the northern passage has opened so cruise ships are showing up in northern Alaska. But I don't know about ozone holes and rising sea levels and their impact on the world economies and peoples and that sort of stuff.

Last night, while my back hurt and prevented me from sleeping, I started thinking about it. My thoughts on climate change awareness are that its not about us, meaning those of us who are here now, its about them, meaning the future generations. We want them to have a nice green planet to live in. We are all urged to do our share to protect the environment and reduce emissions - don't litter, recycle, shut off idling vehicles, walk to your errands and school - and we are getting better at it. There is still room for improvement as we aren't there yet but the point is we are trying.

Last year, in the midst of some medical issue, I ended up at the hospital WITHOUT A BOOK TO READ and was in a magazine free area. This is a very traumatic situation and happened to me once before. (Usually I bring something to read because it magically prevents long wait times.) In both cases when I was bookless, I asked the staff if they had any magazines I could borrow. Both times, I was provided with old copies of National Geographic. The one I was given last year was from the 1980's and talked about climate change and global warming and was full of cool pictures and dire warnings. I was struck by how much was predicted actually had happened - even with my uneducated brain. It didn't go away in the 20 years, the ice caps are melting, storms are worse, global temperatures are rising, etc.

So I guess my point is if they were mostly right 20 years ago, they are probably mostly right now and we should pay attention to the warnings and do our part to help out as much as we can. We want to leave a nice green planet to future generations.

Wednesday, October 14, 2009

Still waiting on the new writers

So yesterday I decided I was fed up with stupid Lyrica because I am still in pain, I think its making me fat(ter), its hard on my stomach, and I don't like it and I called my doctor's office and left a message to that effect. They were supposed to call back with a prescription for a new miracle drug or move up my appointment (a month away - which isn't that far in doctor appointment land) or something like that. No, they called back and said 'the doctor said to double your dose, we have called in a new prescription for the increased dosage but in the meantime just double up your pills'. WTF? This is not what they were supposed to say. Big (fat) sigh.

Being a positive person, I pouted and whined to my co-worker (got the message at work) and to my husband when I got home, and did some research. Evidently the dose I was at was the lowest recommended dose and now I am at a moderate level - but if you take too much Lyrica, call the poison control center. Let me just whine for a moment (for a change) about my health and how I am sick and tired of being sick and tired. Okay, whine over.

One point that I do feel proud of myself for is actually checking my other prescriptions last night and calling in a refill so I can pick up two prescriptions at once instead of making my usual two separate trips (and its only been four days since I last picked up a prescription). I think Walgreen's pharmacy should give frequent shopping discounts for people who pick up prescriptions often.

Today is a big day. Well, not that exciting but just lots going on. First, we are getting new living room furniture so we are donating our old sofa to a place that helps homeless people get off the streets. So Walter moved the old one out to the curb (and I watched) on this little dolly that I bought at the hardware store. I can't lift anything so we were concerned on how well this would work. My back hurts from just watching him. (In the couch I found a lime green crayon and underneath was a dime and a cat toy and lots of dust bunnies - vacuuming will occur later). I just need to put a note on the sofa for the people coming to pick it up.

The next event today is the cat gets to go for a car ride to the vet. He will hate me briefly until he gets home and then I will feed him and life will be good. But he really hates the car. He hides from the carrier. So last night Walter put the carrier in the car. Today I will carry the cat out to the car. He will be so excited to be outside that I can stuff him in the carrier before he realizes he is going in the car. When I get to the vet, they will go and get him out of the car for me so he doesn't make my back hurt (more).

Then I am off to a full day - therapist at 9, work from 1015-245, physical therapist 330-415, pick up the cat between 5 & 530. I hope to fit in a tiny walk between PT and retrieving the cat as it was too yucky to walk yesterday. So when I go out the door today, I need the cat, his blanket and a can of food (God forbid he misses a meal); my lunch and an apple for a snack, bottle of water, cup of coffee; sneakers for my walk; and list of meds (which has changed since yesterday when I printed it out), calendar and list of PT appointments, and medical history (to put the new guy in to shock). Then perhaps I will vacuum up dust bunnies on my return home.

Tuesday, October 13, 2009

Specialists vs. generalists

When you need to get your car fixed, you take it to a local garage or maybe the dealer for work. The local garage would be a little cheaper but there might be a convenience factor, closer to you, or maybe you know the people there. If you choose the other option, the dealer will probably charge you more but you feel that you are probably getting better quality work done. But what's the difference in the end? Your car is fixed. Your wallet might be a different size but that's about it. The local garage would be a generalist but the dealer would be a specialist.

Now comparing this to taking care of our bodies. We all see a bunch of specialists. The closest we come to to a general practitioner (generalist) these days is our Internal Medicine doctors - but aren't they really specialists these days? I have lots of doctors (internal medicine, radiation oncologist, medical oncologist, breast surgeon, pain clinic doctor, back surgeon and a bunch of others I don't see any more). The other day, The New York Times had a commentary on how women with breast cancer have to see many diverse practitioners and risk falling through the cracks. I agree with her point at the end that focus on finding the cure, should also include organizing the existing medical care.

I think I get good care at the local hospital where I see a bunch of specialists. I could go into Boston to Dana Farber, which is less than 10 miles by car. But I am comfortable where I am. I like going to the smaller hospital (which really isn't that small) and not dealing with city traffic - that 10 miles could be an hour at the wrong time of day. I can make it door to door in less than 15 minutes, closer to 10 if I hit all the lights. I can keep my notes together and bring them to each appointment and not feel like I am just a number. I think I am okay managing my own care but if anyone wanted to step in and take it over, I'd probably let them to an extent.

In the meantime, today I am working from home this morning. This means I will negotiate with the cat on how much of my lap he can have and how often he will get little pieces of chicken (right now lots because I just stepped on his tail by accident). I hope to get a walk in this morning but it is rainy and 47 tropical degrees. So it might be a cold/damp experience instead of a nice walk. Then I am off to work and to get a hair cut. (And I prompted my husband on this so he might notice when I come home...) Oh, and my back hurts.

Monday, October 12, 2009

Sleep in a hospital - that's a great concept

So last time I was hospitalized, I did a 'fair amount' of whining about how little sleep I got because of the constant interruptions for vital checks, blood samples (apparently your blood is better at 5 am than any other time), and all sorts of interruptions. I have never gotten a good night's sleep in a hospital unless seriously sedated. And when I don't sleep, sometimes (but only rarely) I get crabby. Which means I am not a good patient as my inner evil b*tch comes through.

This morning's paper was pleasantly surprising - a local hospital has tried a study allowing patients to sleep for eight hours in a row and found it cuts down on sedative use. It takes a medical study to prove that letting sick people sleep is a good thing? Don't doctors tell us to sleep for eight hours a night? Then when you are hospitalized you cant because they need to check your pulse or something. Anyway, I am overjoyed to see that light is dawning on the medical profession that they should allow us to sleep as they recommend. (But I couldn't find the whole article online.)

Today I am up bright and early to go to work. The cat thought this was a find idea because his food dish was empty and he didn't want his dry food. He wanted a few bites of a new can of canned food. Walter is sleeping in. I will go out in the dark morning and go to work. And its cold. Apparently its in the 30s. So I have something else to whine about. Not that I whine all the time or anything.

Sunday, October 11, 2009

I have a problem with this

There was an article on CNN the other day about 'How We Are Winning the War on Breast Cancer'. I have several problems with it that I am happy to discuss here.

First of all, lets start with the title: its not a war. We aren't battlers or survivors. We are people. A war has militaries and weapons and soldiers. I only know of doctors, patients, lab researchers, technicians, and other people involved in this so called war.

The first subhead says "We Know More than Ever". Well, doh, unless you have some kind of problem with learning, we always know more than before as man continually learns. So what is new here? Actually they say scientists know more than before, that its really a bunch of different diseases. Does this give any warm fuzzies? No, it just means that they need to learn a lot more before they have a solution.

Next, "Treatment Gets Personal"? But I already figured that one out. Everyone cancer is different and what was used to treat one person, probably isn't appropriate for the next as there are so many factors that come into play - not just abuot all the perculiarities of one cancer but of the patient - age, general health, reproductive issues, etc - that come into play.

'Surgery is less traumatic' - well maybe they can take out less tissue to get the same results and that reduces long term recovery issues and is less traumatic. But it would be nice not to have so many. I have had 8 surgeries, four of which were cancer related. My body is a network of scars. I could play connect the dots between incisions. Surgery is always traumatic.

'Radiation is safer' - that's nice to know after I had 33 rounds of radiation on my chest right on top of my heart. I realize things have advanced but still can you tell me I have no long term heart damage as a result of it? No.

'Reconstruction looks great' - well, its nice to know after generations of leaving women scarred and deformed, they are in a better position to return a person to a normal looking state. Do you know what's it like to look at yourself in the mirror every day and you hate it so much you just don't look in the mirror?

'There are fewer complications' - I think this is true of all medical practice. Everything is getting better and better and reducing complications through less radical surgery, sanitation practices, or whatever is happening everywhere.

'You can reduce your risk' - well, there's another breakthrough. I have been eating lots of fruit and vegetables and whole grains for years. I do exercise daily. I did what I was supposed to. So what was my risk if I ate fast food and was a couch potato?

'Research is ramping up' - that's just fine and dandy but if you have cancer now, and something is in the research stage, just getting to the mouse test level, there are several more years to go before the new information/medication gets through testing (and proves to really work), how does that help us now? Well, you can be all rosy and say 'what is going on now will help others in the future' but sometimes we need to be a little selfish and say 'cure me now'.

I think this is just your average October pep-rally to say that cancer is being attacked head on in a war... that doesn't really exist. We just live with it.

Saturday, October 10, 2009

In the category of where were you when...

So where were you when the space shuttle blew up, the World Trade Centers fell, or you found out you had cancer? There are some things that are indelibly etched on our brains - when the clocks stopped for a second and everything shifted and you knew things would never be the same?

I was at a support group this week and someone brought up how mad she still was at her doctor's office over a year later for having the nerve to tell her over the phone about her diagnosis. And it wasn't the doctor who called but his physician's assistant. Later this week was an article (as part of the breast cancer smother that take place in October annually) on how this doctor breaks the news about cancer diagnosis.

Since I have been in these shoes twice now, I think I have an informed opinion. I can tell you exactly where I was both times - actually lying in bed for both so I guess no more lying in bed ever. The first time I was in post op recovery and the surgeon came to tell me. The second time I was lying on the bed, in a post surgery nap, and the surgeon called. It was about 430 pm if you want to be exact on May 30, 2007.

I think from a patient's point of view, everyone has their own opinion. Personally, I want to be told as soon as they know. Its news about me so don't hold back. I don't mind this in a phone call (but please make sure I'm not driving when you give me the news) so I can digest it and mull it over and research the crap out of it on (scare myself silly, convince myself I'll be dead next week, and generally drive myself insane) before coming in for a doctors appointment to discuss options in a sane and lucid manner. I think the doctor in the article is very compassionate and caring about how she calls when. However I am not sure I want a call at night. I prefer to think that after 6 pm no one will call with bad medical news and I am safe for another day.

But this brings up my point: everyone is different on how they want news, when they want it, and who should tell them. So speak up and tell them how you want news. If you go for a test/biopsy/surgery/procedure (my favorite word), a responsible patient should ask:

- when will the results be ready
- when can I expect to hear
- how can I expect to hear

I always ask. I also have no problem calling my doctor's office to ask if the results aren't ready when they tell me they will be. But I also have no problem screening a call if I am not in a good place to get the results. If that is going to be etched in my brain forever, I better be someplace I can deal and don't mind remembering.

Now I am done blabbing for the day. I have promised my husband waffles for breakfast (he doesn't know they are whole wheat ones made as healthy as possible) and then we are going to play mini golf, go for a walk and get some apples and a pumpkin because America buys pumpkins on Columbus Day Weekend. Then we all carve them on October 29th or so and admire them for 2 hours on Halloween and then off they go. Actually, my pumpkin should just be called 'Soup' because that's where it will end up.

Friday, October 9, 2009

Losing and finding my topic

I had a great idea for a post... but that was yesterday. Today I can't remember it. I even left myself a note, which I can't find. I will say yesterday I started a bit of a flame war on Facebook. Some idiot, and I use the term loosely, said that people with metastatic breast cancer are the 'walking dead' like people on death row. I think some how she didn't realize how insensitive that was. If you feel she is correct and I am wrong, please let me know. However I really do think she is in the wrong.

Anyhow, today I am working from home. The electrician is coming to replace 11 outlets which are two prong with three prong ones. Our goal is to be able to plug things in with out adapters and extension cords everywhere. Anyway, it will be an eventful morning with moving everything around. Including my computer desk in my office. Since it is a disaster to start (see comment above about the lost note), I am not sure if it will be a good thing or a bad thing that I need to move it and rearrange. Perhaps I shall consider vacuuming behind it. The funny thing is you let an electrician or other worker into your home to do work and they find out all your secret little messes - the piles of dust bunnies. I hope our house is not the messiest. Actually, I consider it just 'lived in'.

The other day there was an interesting article on CNN, which now that I go to find, I can't find it but I did find the article that I meant to write about (chemo brain wins)... The article is about Planned Patienthood and ties in with a patient advocacy topic at a support group I attended the other night. Basically, when you go to the doctor there are a few things to remember:

1. Your doctor cannot read your mind. Nor can (s)he tell what hurts when unless you speak up. And speak up quickly before, they run out of time.
2. Write things down (even if you don't have chemo brain) so that you remember to ask all your questions and the answers to them.
3. Ask questions if you don't understand or aren't clear. You are paying for a service so you should get the information in an acceptable format (even if you don't like what they are telling you).

So now that I have written about my oh-so-profound topic, I need to spend some quality time tidying up my office and vacuuming up dust bunnies.

Thursday, October 8, 2009

Feeling stressed

I can't believe our vacation was only a few weeks ago because of how stressed and overpressured I am feeling. One of the downsides to all this part time work is not getting paid when I am not there. Between travel, vacation, volunteer commitments, doctor appointments, and holidays for schools, I haven't had a normal week - where I wasn't trying to fit everything in too few days - since sometime in August. No, I am not kidding.

Last week, I went to my reunion and was gone on Thursday and Friday. The week before, Monday was a holiday (Yom Kippur) and schools were closed and everything got moved around. The week before that I had to fit in a dentist and a doctor and the electrician for half a day. This week, I have to work from home tomorrow because the electrician is coming so this means I will have an entirely unproductive day when she is here because my computer will be down for part of the day. Next week, Monday is Columbus day so school is closed and one job is closed as a result and Friday I have a volunteer commitment. This means, I will shift my schedule around and work nearly 30 hours in about 3.5 days. Do the math. It doesn't work. The week after might actually be normal.

Today, I have three scheduled phone calls this morning, need to do some market research for a client, go to work at 12 or so, and have to make a doctor apt for Walter, a vet apt for the cat, follow up with one of my doctors, and schedule the new furniture delivery. I want to fit in a destressing walk but may not have time. I'll be home from work around 7...

This weekend I need a day of doing nothing but not sure I can fit it in. In the meantime, what does this mean? I constantly feel pressured and stressed as I run from one thing to another and feel like I am constantly late. I top this off with back pain, and I am out of my special pain meds so I haven't been sleeping as well. This all leads to crabbiness and general crankiness.

Basically this is just me whining about being in pain and too busy.... Yesterday I also ate something (that was probably my own cooking) that my stomach failed to appreciate which does nothing to improve my mood or well being. Feel free to ignore me.

Wednesday, October 7, 2009

Not a profound post

I was going to write a really profound post about alternative treatments but just can't get started this morning.I think its because:

1. Its a rainy, yucky morning. (If all else fails, blame the weather.)

2. When the alarm went off, I went back to sleep. And this messes up my schedule because I have to take one set of pills and wait an hour before eating. Now I have eaten and can take my other pills and am late for work. (But didn't really want to drive in the rain.)

3. I have to do some research on what I want to write about and need more coffee to be coherent. And I got side tracked on the internet - the world's biggest time suck.

4. I am still tired from my weekend of fun and travel. By the time I got home yesterday I needed to sit down for a bit before I could deal with dinner. (And even became a little crabby.) Which is one of the reasons I don't mind the fact that I slept in a little.

5. Its dark and rainy outside (and I am completely blaming the weather).

But now I have showered, eaten, and need to finish getting ready for work. Perhaps tomorrow I will come up with some pearls of wisdom...

But in the meantime, here's a little poem to start your day:

Everything is Wonderful

My face in the mirror
Isn't wrinkled or drawn.
My house isn't dirty,
The cobwebs are gone.

My garden looks lovely
And so does my lawn.
I think I might never
Put my glasses back on.

Tuesday, October 6, 2009

Scheduling, scheduling, scheduling

So as part of a return to my regularly scheduled life yesterday, it was time to get caught up with doctor appointments. First I called physical therapy about my ankle. I had seen the doctor a week and a half ago and she said 'I'll fax your order to PT and they should call you Monday'. Hah, I knew better so I planned on calling in a week myself. I called and they said 'we are running a six week backlog'. SIX WEEKS? The whole point is to heal my ankle... So she helpfully suggested I call other places (and was surprised the doctor wasn't aware of the backlog - all doctors knew about it). And I was told the woman who helped me with my back last year is now gone so there is no way I can get here - time to break in a new PT person (they cringe with my medical history).

So I called the hospital's less local PT area, and they said 'six weeks is way too long to wait, let me get your orders faxed here and see what we can do'. They called me back and I now am going next Wednesday for PT assessment and then have PT sessions scheduled twice a week for three weeks - and they are all at 730AM or 630PM. Gee, they can see my perky side first thing in the morning. Maybe I'll bring them coffee or something.

Then with that scheduling debacle resolved, for the third time, I called my radiation oncologist's office to find out about when my next follow up is planned. I had completely forgotten to ask when I saw her last when I would see her again. The first two calls were answered by Ann-the-idiot (see my post from August about her) and I never got a return call or anything scheduled. My next call was going to be to the nursing supervisor to get an answer and file a complaint. But now I know she is an idiot and if she answers when I call again, my request will be to speak with someone who knows what they are doing.

Anyway, I got a nurse on the phone who could locate and read the doctor's notes. Apparently the doctor wants to see me back on a three month recall instead of six. This seems like a little back step to me but since I am the patient patient, I will bide my time and talk to her when I see her in December (which isn't really three months, but four since the idiot didn't resolve my earlier requests, there is nothing available sooner). I definitely will plan on asking the doctor about a three month call back instead of six but this is the same doctor who is very proactive on tests, etc to correctly diagnose issues. And between PT and doctor appointments, I have 11 trips planned to the hospital in the next six weeks. I can't wait. And none of them coincide with the flu shot clinic so I will have to make a separate trip.

Otherwise, I sort of feel like I am getting back on top of things. I have a horribly overscheduled week, instead of an overscheduled day. But I am back home and Walter is back home so we are all back together again.

Monday, October 5, 2009


Picture me running screaming from the pink. As the years go by, the less I like October and pink. Yesterday I took the CTA to Midway airport and was greeted by giant pink ribbons and pink flood lights. The lovely Sky Mall catalog on the plane included all sorts of wonderful breast cancer merchandise for sale - and lots of pink. I got home and the weekly newspaper was publishing on pink paper. And included a series of articles on breast cancer. My mail box is filling up with requests for donations or purchases of breast cancer items...

But the Sunday paper also had an article on breast cancer patients rebelling against all this pink crap. It also had a very touching article about supportive husbands and breast cancer - for the record, my husband will hold my purse.

Let's talk about this pink stuff. Sure its great to raise awareness for breast cancer or any disease. But is this over done? How much of the money spent when purchasing a pink thing actually goes to breast cancer research - do your research first. Do you know what pink-washing is? unfortunately, its a sign of how too much marketing can be misleading. Pink washers claim to give money to breast cancer research but really don't tell the whole story. Again, another area for some research before you open your wallet.

So all of us breast cancer people (and don't use the word survivor on me) should be jumping up and down about breast cancer awareness in October? Well what about thyroid cancer awareness? Degenerating disk awareness? Torn ACL awareness? Sprained ankle awareness? I think I have enough ailments that I should have a month of awareness for each of my medical ailments and then I would fill up a calendar and could buy a whole wardrobe, completely accessorized, to wear each month for the appropriate ailment. So my point is, its over done. I don't like pink as much anymore and try not to wear it in October...

Anyway, I had a great time at my reunion. Not enough sleep - but then I could be hibernating half the time on the amount of sleep I need these days. Lots of back pain. But the most important part was lots of fun. Nothing like seeing people after 25 years and just picking up where we left off. Walter picked me up at the airport and it was great to see him after a week a part. We aren't very good about this time apart thing... Call us honeymooners still or something.

Today is the return to reality and getting organized, doing laundry at home, getting on top of my pills again, and going back to work. WAH! But I had a blast.

PS to the guy who commented yesterday about a mushroom that will cure cancer? Get over it. Snake oil will never work.

Saturday, October 3, 2009

Traveling makes me lose track of my pills

No I didn't lose them. I just forget to take them. (The only thing I have really lost is my mind, but I am sure you knew that by now.) Yesterday and Thursday I got all messed up. I think I ended up taking everything right but maybe not. But I haven't OD'd that I've noticed - I think I would just turn into more of a space shot if I took too many and my pain levels haven't increased that drastically. But my back isn't happy with walking around and being social in the rain.

Yesterday morning we walked around Madison and went shopping... Then we came down to Beloit where we are staying in another cushy hotel - with a gas fire place, whirlpool tub, and king size bed - its a suite with a pull out couch too. And a kitchenette. And if I could use the stupid coffee maker we wouldn't have coffee on the counter instead of in our cups.

This morning we went for a walk and to the farmer's market. Then we are off to breakfast with an old friend and then up to campus to do alumni things. Yesterday the only alumni things we did was register and then mooch food at the alumni house because it was rainy. Tonight's the big dinner and I plan to schedule a nap for me.. I kind of over did it again yesterday... And went to bed at 9 pm. Perhaps this over doing things needs to be discussed with the doctor. Sigh. I don't want to discuss things with doctors. I don't want to go to doctors. I want to be healthy. Actually I guess today I want to be whiney. But I'm getting good at that.

Friday, October 2, 2009

The joys of plane travel

I have spent entirely too much of my life in an airplane. I used to travel a lot. Now I don't. I don't mind. A business trip is the most overrated form of transportation on the planet. Now I travel for fun and its much more interesting. But the airplane portion of it is no different. Now there are just more rules, less food, less entertainment while you are on the plane.

But people are still stupid. While boarding there was a couple for whom English was clearly not their first language. They had more luggage than they could carry aboard. The gate agent decided which of their bags was not carried aboard. The woman was upset. As the woman behind me said, telling them to check a bag when they don't understand isn't going to work. Now they had two upset passengers needed a little more courtesy. Perhaps a translator could have helped.

Then there are the people who sit down and want to borrow your newspaper - they part you wanted to keep. If I was giving it away, I would offer. If I am sticking it in my bag, I'm keeping it.

I will report that air plane seats are contoured for someone else's back. Not mine. I need more support. Don't tell me I can use those nasty little pillows and blankets to support my back. When was the last time one was cleaned or a pillow got a new pillow case? Just say bodily fluids and head lice and you will never touch one again either.

But I did arrive and my back was mostly fine. It really appreciated being picked up in a (complimentary) limo at the airport. A real limo. Not just a town car but a real limo with seats for four in the back. And the hotel is pretty darned cool too since we are about 15' above the lake surface... And had Afghani food for dinner. I did go for a little walk in the afternoon but my back was very tired so I was a cooperative person and listened to the little voices and actually took a nap and iced my back and feel mostly human.

This morning we are off for a morning walk and then down to the college reunion which was the real reason for this trip in the first place. I am taking part in a alumni networking fair with students and other alumns. I figured my piece of advice for students is simple - 'Don't get cancer'.

Thursday, October 1, 2009

Is up entirely too early

I am wake way too early. For some unknown reason which was sensible at the time I scheduled myself on a 730 am flight this morning to go to my college reunion for the weekend. Of course, I couldn't fall asleep last night. But that would be my life. I'll post if I can over the weekend but perhaps not.

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...