Adventures in travel

We went up to Montreal for a few days. We stayed in a great hotel and had a good time - except the day it snowed and we opted to explore underground Montreal instead which is like a giant shopping mall. We did have a few adventures:

- the botanical gardens are not very good the day after a snow storm.
- it is impossible to avoid hordes of students on field trips at museums if you go on a weekday.
- if you want to eat dinner outside under a tent, it is wise to do it before the snow storm.
- we managed to sit and admire the Notre Dame cathedral for an hour - and listen to some great music - by attending the Sunday mass which had a choir and organ.
- if one wants to be able to use one's bathrobe, it is important to bring your bathrobe belt.
- just because you are in a foreign country, it doesn't mean your back won't hurt.
- it is important to remember to bring everything home that you left with - we are searching for some things.
- it is difficult to con your spouse into eating weird food if he is paying attention.
- cell phones work on the highway for a nanosecond and then you have no bars and your calls get cut off so people may think you are being rude.
- it is possible to get great deals on somethings even when the exchange rate isn't very good.

Otherwise it was a great time. We shall go back.

In defense of pillows - or why I require 5 on my side of the bed (minimum)

I can easily blame a bad night's sleep on any number of things: back pain, ankle pain, mysterious undefined pain that I just know is there, mind racing due to work stress, mind stressing due to medical issues, playing the 'what if' game (as in what if there is more cancer somewhere lurking), etc. Or I can take the easy route and say I didn't have enough pillows.

I like to have somewhere around five king size down pillows on my side of the bed. I need one to put behind my knees. I need three or four to prop up my head and upper body properly. I need one for the cat to sit on (or he sits on me). My husband, for the record, uses two standard size foam pillows and laughs at me and my peculiarities.

This morning I am up early due to lack of pillows. I need at least three more. I will attempt to rectify this situation. Otherwise, I'll just be crabby from lack of sleep.

Another outrageous pink thing

We were watching TV the other day and saw a commercial for these:



Yes, really, pink trash cans against breast cancer. You can get one for $159.00 and $5.00 will be donated to fight breast cancer. Let's examine this: First from the monetary side. $5.00 per trash can or roughly 3% of the purchase. (And its $159, not $159.99 so you are saving the $0.99 each as well and free shipping on their website. Why don't they add that $0.99 and be generous and donate $6.00 instead of $5.00.)

On the monetary side, isn't $159 a lot for a trash can? I thought you could get one for much less? I just took a peek at the Ace Hardware site and you can get a four pack of comparably sized wheeled trash cans for $127? So this is a little bit of price gouging. You could buy four trash cans and get a few cans of pink spray paint for less.

Is pink a practical color for a trash can? I mean most are in dark colors so they don't show the dirt.

I will say that the commercial we saw them on was giving them away free if you signed up for their trash collection service or something. Would I use one if I was given it free? Probably, but we don't really need another trash barrel. However if they came in all of the cancer colors and you could put a whole rainbow out in front of your house....

My verdict: another bit of pink washing here...

A long hair story

Finally, nearly three years after cutting it all off, my hair is at that stage where it is annoyingly long. Post chemo I have been getting hair cuts every 8 weeks to allow growing time between. I have reduced the amount of time to 7 weeks recently and now am 1.5 weeks from my next hair cut and its driving me CRAZY!!!! Its okay in the front but in the back and the sides, its driving me crazy... Its too long to ignore but its sticks out and is too short to pull up. Grrr.... But that's a happy grr because I have been waiting for this for a LONG time. I would rather be aggravated than bald.

Stowe Weekend of Hope

We are off this weekend to go to the Stowe Weekend of Hope. We went last year and enjoyed it. Its one of those things that are free to cancer patients the first year and then at reduced lodging rates for additional years. I find 'free to cancer patients' somewhat as an oxymoron or something - cancer is a really high price.) Anyway, it should be a great time. They get some great speakers who focus on dealing with cancer and coping and hoping.

We will arrive on Thursday night. Friday has sessions on breast cancer all day. Saturday has a mini conference on Thyroid cancer as well as sessions on colorectal cancer - so we will be busy all day. There are also all sorts of other sessions on different cancers, living with cancer, dealing with cancer, coping with cancer, as well as celebrating still being here, vendors with resources for cancer people, etc. When you check in you get a name tag which lists the types of cancer you have. Most people have one type. I have two types but then there are people who have three or four types of cancer.

Then they make announcements to find people with your type of cancer and start talking. People open up to others with cancer in ways you have not seen until you are there. Cancer is isolating and if you don't have it, you don't understand. But put a bunch of us cancer people together and we will happily share our medical histories and compare prescriptions and side effects for hours. Because we all understand what is going on.

So if you are going to be in the area of Stowe VT this weekend, sign up at www.stowehope.org and come talk to the rest of us with cancer.

What is wrong with me...

Now someone did make a point yesterday in a comment that they didnt understand what the needles in my back were for but hoped it was not for cancer related issues. So what is wrong with me? (And I am not consulting my husband on this as he will have other diagnosis not normally found in the medical profession).

Basically I am okay breast cancer wise. I have my annual mammogram/surgeon/bloodwork/bone density coming up in a few weeks which will stress me out but should give me some reassurances. I will probably also switch from Tamoxifen to an aromatase inhibitor. The bone density check is to get another update on my bones because thyroid medicine is hard on one's bones as is Tamoxifen and aromatase inhibitors. They will continue to watch my bones for the duration that I am on an AI because I already have osteopenia.

Thyroid cancer wise I am doing okay. I do have to go back for more tests in July but nothing more to know until then. I have a new endocrinologist and there are new follow up standards where I should now see an endocrinologist annually at least.

My ankle is the result of a sprain from last summer. I have a chip of cartilage and a torn ligament. It hasn't healed on its own (or arrived at a state I can live with) so I will have ankle surgery to fix this.

My back is an adventure in itself. I have degenerating disks. Back pain started November 2008 and I ended up a doctor in January 09. I have been through MRI's and x-rays to arrive at the diagnosis. It happened naturally. It only hurts when I stand, walk, sit or lie down. It is not treatable by surgery. I tried PT, I was told not to try massage, yoga, pilates, or anything else that might put pressure on parts of my back. It is 'manageable' through medication, exercises, and cortisone injections and other invasive procedures. The latest one was a diagnostic facet block as a test to see if a radiofrequency procedure that will kill off some nerves permanently and relieve the pain in that area. I use the term 'manageable' loosely as I am on a permanent 20 lb weight lifting restriction and can no longer do lots of things that I used to enjoy like: skiing, sailing, walking on loose surface (snow, sand, etc), bicycling, etc.

My left arm has lymphedema. It is a mild case but lymphedema is not something that ever goes away. It gives me additional restrictions where I can't do anything that stresses the arm. This includes things like: carrying, lifting, pulling, pushing, sun burn, cuts or scrapes (no matter how small), etc.

Otherwise, I am healthy. (Aside from that Mrs. Lincoln, how was the play?) My body is slowly falling apart I think. But I'm still here.

More reassuring articles

I have to stop reading. That's it. Why read this stuff other than to drive myself crazy? First, we have all the articles floating around about cancer recurrence rates and all sorts of lovely statistics, never mind the news reports about people who die from cancer. Then apparently I need to be concerned about side effects from the anti inflammatories I take for my back. It doesn't look like I am going off them any time soon.

And I guess I am supposed to either be saving my money to pay for a knee replacement in the future. Something nice to look forward to - but its not cancer so I guess I should be happy. My right knee has had meniscal tears twice and I have a partially torn ACL as a result of ice skating and skiing. (I should add that no one knew I tore my meniscus the first time, it was back when I used to ice skate. It was only found when I had knee surgery). But I digress. Basically since I had fun earlier in my life, I will need a knee replacement in the future, if this article is correct.

So my dilemma. Do I stop reading or do I stop believing what I read? Or do I just read cook books and fluffy romance novels that don't contain a grain of reality? Perhaps I'll just stick with the romance novels.

Yesterday afternoon I attempted to go for a walk. I didn't get very far until my back decided I shouldn't go for a walk. Today I will try again for a short walk. I just want a new back.

The day after...

Wednesday afternoon I was happy. My back did not hurt. I cooked dinner, went for a walk, stood, cooked, all sorts of complicated things. Then the day after the good day began... Yesterday morning I was driving to work and decided my back was hurting so I took half a pain pill as I needed to drive and work (things that I don't do after a whole pain pill). However my back continued to hurt so I took another half a pill at lunch, left work 45 minutes early, and came home to put ice on my back and more pain meds.

My upper back was not happy because it had 12 needles stuck in it. It just felt like it had been punctured 12 times. My middle back was not happy (I have no idea why, perhaps it was in sympathy for my upper back) and caused severe pain so I had to resort to my lovely lidocaine patches and continue the ice pack route. Needless to say, we did not go out to dinner last night as previously planned and stayed home. What is difficult to manage with my back pain is that I have degenerating disks in my lower back, but now seem to have problems with my mid and upper back - caused by irritated nerves. Its not fun and I am a walking drug store these days.

Today, I will keep a low profile. I have a lot to do - bank, library, work (but locally and for a shorter day), laundry, etc. I also hope to squeeze in a walk because I didn't get one yesterday. So far my back feels better than yesterday but since I'm not out of bed yet, the jury is still out.

Mental note to self: it pays to ask questions FIRST

Yesterday I got to spend quality time at the hospital. I had a back injection scheduled for 930 am but had to go with my husband first thing in the morning, which means I got there at 715. I did plan to visit a friend who works there, another friend who volunteers there, have breakfast, and get my bloodwork that is scheduled for two weeks from now done. The advantage to getting my blood work done ahead means that the doctor will have the results when I see her an hour later.

First stop blood lab - where the only blood work in the system for me was for a single test which is very odd. Usually my oncologist wants a full set of blood work before I see her. The blood lab thought it was odd as well and said we should check with the doctor first but it was too early to call the doctor's office. They said try again another time. Second stop, visit my friend the volunteer. She wasn't in yet. I gave up and said time for breakfast. I ate some healthy egg beaters and a not so healthy bagel. I tried calling my friend who works there and she wasn't available. Finally it was time to call my doctor's office where I found the doctor only wanted the single test (I bet that gets changed later and they want a complete blood count). So I went back to the blood lab and got my single test done. Then I went to visit my friend who was there. She was running late which is why she wasn't in when I stopped by before.

Then it was time for me to check in for my lovely injection. I did the usual waiting around and then they brought me in. They said (and they always double check - are we doing brain surgery or a knee operation - to be sure you know why you are there) 'do you know what you are having done today?' I said 'back injection'. She said 'actually a diagnostic facet block'. WHAT!!!! That's the most horrible, nastiest, painful procedure I had done last summer WHICH DIDN'T WORK! And it resulted in horrible pain afterward. (Why didn't I ask first? Why didn't I take an ativan before coming?)

I thought back to the last doctor appointment and he had confused me with diagrams and explanations. I thought I was getting a single injection. But no, another diagnostic block. First they use three needles to numb progressively deeper levels into your spine. Then they stick in three needles, one in each facet joint and put in nasty stinging pain medication. Then they stick in more needles, one in each of the three facet joints and inject really nasty medication. Then they go to the other side of your spine. So you repeat the procedure. 3+3+3+3=12 needles!!!! Ow, ow, ow, ow, ow, ow, ow, ow, ow, ow, ow, ow.

But then happiness. My back didn't hurt (in that area) for a few hours. I kept a pain log - and tried all sorts of things like walking, standing, cooking, gardening, computer work, and my back didn't hurt. The next step is to fax in my pain log (which is temporarily MIA, I am sure I put it in a 'safe' place and will find it someday) and see about a more permanent solution. The thing about this nasty procedure is that it is only for diagnostic properties and if it works, you get to have it again but with radiofrequency attack on the pain nerves to kill them off. But you get sedated for that. Gee I can't wait.

Anyway, I do feel this one was better than the other one - it was much higher up in my back. I will find and fax in my pain log so we can work on this area before progressing to the other areas of pain.

I'm not the only one who is confused

It is nice to know that the doctors and pathologists are often confused as well. Or do they just share their confusion with us patients? At any rate, it turns out medical tests are not necessarily black and white. I am sure there are safeguards and double checks built in to the system. I personally know that when I had a confusing pathology report on a recent test, my doctor discussed it with at least one other doctor. I know I discussed it with three of my doctors.

Now today I am off for another lovely back injection (can't wait - NOT). The actual injection is painful briefly but the results should heal that lovely spot in my back that jumps up to a pain level of 8 out of 10 if I stand or walk for more than ten minutes or so. (This morning it is twinging because I was bad yesterday and walked and cooked standing up for more than an hour.)

This also means that I need to get up and motivate as my husband is dropping me off at the hospital on his way to work. Originally he felt, we need to allow an hour for this. I'm giving him 15 minutes. That should put me there at 715 which is when he usually leaves for work and gives me over 2 hours to kill. But I have plans. I have one friend who is a volunteer and another who is an employee. I will stop by and see them both. I will read the newspaper and eat breakfast. I will get my blood work done which isn't due for another two weeks. I hope I can fit this all in before 930!

However I should be home by noon and then can get some work done and meet a friend for a walk. And hope my back will feel better in the next week or so.

They do this on purpose

The 'They' are refer to are those mysterious people who create the conspiracy theories (and steal lost socks from dryers) around the world. Its all a plan to drive us breast cancer people crazy, kicking and screaming as our brains overload from contradictory information yet again.

So tell me are vitamins and calcium good or bad in the role of lowering risk of breast cancer. Well they just don't know. Read this article which says that calcium lowers risk of breast cancer AND it contradicts a 2008 study that said the opposite. I even blogged about this back in November 2008.

So the burning question is not resolved and 'they' are stuck in a never ending vicious cycle of 'yes they are good' vs. 'no they aren't'. I think they do a study get one set of results and then run another study for confirmation which says they aren't so they have to do another study... See, we will never get a concrete answer here. We can just keep the vitamin manufacturers (are they secretly funding these studies?) happy by buying their products or choosing to eat a really balanced diet and get all that we need naturally?

I don't know. I am confused. I have chemo brain. I can barely remember to take my vitamins with my chemo brain, never mind keep up with these contradictory studies. My brain hurts. But I will attempt to remember my vitamins today.

Happy Patriots Day!

In case you are not familiar, this is the 235th anniversary of the Battle of Lexington and Concord, Patriots Day. I grew up in Lexington where this was the high point of the year. We got up each year, early, and marched in the youth sunrise parade at approximately 730 am - a ritual of childhood for every child in town. Then we hung around and watched the really boring (from a child's point of view) ceremonies on the green and then got to watch, or even march in, the big parade around 130. This was a great day each year where we would eat cotton candy and other 'healthy' treats and hang out with our friends.

Then the pesky bicentennial neared in 1975 and they decided to add a battle reenactment. It started to be held in the afternoon but as a measure of crowd control, after a few years it was switched to its real time at 6 am. But its kind of amazing at how many people will get up early these days - and they just showed it on the news and the crowds were dozen deep with people on ladders in the back.

The rest of the year, it was a sleepy town, where you couldn't get away with ANYTHING (even jay walking) and nothing ever happened. As teenagers, we sneered at tourists, particularly the bus loads of them that would deposit their loads of camera laden out of towners, who strolled around town and stood in the middle of the road to take pictures. But for one day, it was exciting and fun.

We heard about this little road race called the Boston Marathon that would also go on but we really didn't know anyone who would go watch it. Why? We had more fun going on with street vendors and parades and clowns and junk food.

Now my life is a bit different. This is by choice. I have a new routine for Patriots Day. I start my day by watching the reenactment on the news. Then I might go for a walk. Then I start my marathon. It starts earlier now than in previous years but once again I have adapted. I will get ready and prepare my snacks and settle in on the living room couch, accompanied by my laptop and cat and a cup of herbal tea, and get ready for a marathon of marathon watching.

Now they are saying that there is a movement to make Patriot's Day a national holiday. Currently it is only observed in Massachusetts and Maine (which was part of Massachusetts until the 1830's - I bet you didn't know that fact). It is supposed to make American's more aware of their revolutionary roots. For me, it has always been a holiday.

Evidently we didn't get the memo

As we approach our fifth wedding anniversary, I read this article in the New York Times which says basically (its long so I will sum it up for you) that happily married people are healthier. Evidently my husband and I did not get that memo.

Although I already had one pesky little cancer diagnosis, I was relatively healthy for years before getting married. Since then I have been hospitalized several times, have had five surgeries, five back injections, cancer diagnosis, chemotherapy, radiation, sprained ankle, and degenerating back. My husband has only had one cancer diagnosis and one surgery. So evidently we missed that memo. But we are happily married. We are about to go on vacation together and plan on enjoy ourselves greatly.

This weekend we are attempting to break out of our rut of being boring married old farts. Last night we went to a dinner dance (and are bummed we did not win any of the raffles or door prizes) and stayed out late. Today, we are going for a morning walk and then to the Red Sox game. I am very excited even though I haven't been following the team much this year. I am a fan and have been for years, I used to go to games fairly regularly but that was probably 20 years ago. But first we will go for a morning walk since it is not raining. And attempt to eat healthy food before base ball park fare this afternoon. But we will be happily married old farts who pretend to be healthy once again.

Long term chemo effects

For a quick bit of humor, watch this first...
See, it pays to be polite. Don't honk at old people.

So I was surfing the internet (wasting time online again) and found this one person asked a question if chemo could have caused her hands to shake. So having an inquiring mind, I had to read the whole damn thing. I had forgotten a lot of these - conveniently blocked them out of mind. Perhaps this is due to my cognitive dysfunction (a/k/a chemo brain). So in conclusion, having chemo brain can be helpful. You have a reason for blocking out the bad parts of life.

So today is another rainy yucky day. Yesterday I was bad. I didn't go for a walk (gasp!) nor did I do all my exercises last evening (double gasp!) nor did I take all my vitamins (triple gasp!) nor did I eat a salad (quadruple gasp!). But I worked all day (and got a manicure) and it was rainy so I didn't have time to go for a walk or to the gym. I was lazy and didn't feel like doing all my exercises. And I have chemo brain so I forgot the rest of my vitamins last night.

This morning I am going for a walk (the rain has stopped but its cold and yucky out) and then I think I have a volunteer meeting. Tonight we are going out. Yes really. We are going to a fund raising dinner dance for the nonprofit I now work for. It should be fun. It means getting out of our rut.

Who is this twit? Part II

A friend of mine posted this yesterday and I can't believe there are more twits in this world (and I use the term twit loosely).

I don't mind the article. I think it does have a point. I think its a badly written article. Maybe badly is the wrong word but my inner marketing writer thinks it could have been phrased with a bit more socially correctness. Here is the conclusion:

'“This study suggests that being physically active may also help reduce the risk and that something as simple and cheap as doing the housework can help.”

He recommend that men and women take regular exercise and maintain a healthy body weight to help prevent cancer.'

Their point should really be regular exercise, where you get up and get moving regularly, as opposed to just short bursts of exercise when you go to the gym, is what is more important. The only time men are mentioned in the article is in this last sentence when it talks about regular exercise and healthy body weight. I don't consider an article on women doing more housework to be enlightening.

By the way, I do exercise and also do housework and I still got cancer. Explain that one. Maybe my dust bunnies will remain cancer free.

How the other half lives

I was talking to a friend the other day. I realized I was very jealous. She is a year older than me and she goes to the doctor ONCE A YEAR! That's it. She gets by with an annual check up. I guess I realized that there are people out there like that but didn't think I knew any of them.

This is a prime example of the haves vs. the have-nots. The have-nots have no ailments and are healthy. The haves are privileged to have ailments, a team of doctors, regular daily medications, and multiple medical doctor appointments. I think I would rather be a have-not. I guess I'm jealous.

Today I am not going to the doctor. I already did that this week. Next week I get another needle in my back (oh, joy!). Today I am going to work at my new job. I plan on being productive... and then visiting a friend and then going for a walk and to the grocery store. That's my day.

Color me pink for appalled

Kentucky Fried Chicken has announced a new partnership with the Susan B. Komen Foundation called 'Buckets For the Cure'. This has been accepted with an astonishing level of pessimism by others with breast cancer. Actually, everyone I know is pretty ticked off by this. Here's why:

- Ways to avoid cancer and keep it at bay include eating healthy, and skipping fast food, especially fried fast food, such as is sold at KFC.
- For the purchase of every pink bucket, they will donate 50 cents. What a whopping amount. I am not sure what a bucket of chicken costs but 50 cents is such a significant amount.
- Then do the math. They want to make the single largest donation to breast cancer research, $8.5 million. At 50 cents per bucket, that means they want to sell 17 million buckets of fried chicken. Yes you can make donations to the fund, which currently stands at $2600, so they do have a long way to go. So they want to sell a lot of chicken.

(My disclaimer: I haven't eaten KFC chicken since the 1970's. I do remember it as yummy but greasy.)

I don't know but I think this clearly goes into the pink washing category of shameful, over-exploitation of breast cancer programs. It also clearly illustrates the issue of how much of a product's sales actually go to a cause. If you read the details when something is sold for a cause, it may say something like '1/2 of our profits from the sale of this product will go to a cause'. Well, if the profits on a $50 item is $5, that means $2.50 would go.

If a product retails for $50, chances are the store makes a good chunk of that. So if the manufacturer is selling something which has a suggested retail of $50, their cost is probably around $10, their wholesale price may be something like $15. (I don't think my numbers are so great here but they give you an idea. How else can stores sell things at 50% off if they aren't buying for less than half the suggested sales price.)

Anyway, the point is KFC wants to sell 17 million buckets (a heck of a lot of chicken) in the name of raising money for the pink washing cause. I'm not going there anytime soon.

Desensitizing to allergens?

There definitely has been an increase in allergens in the world - more toxic chemicals are used more widely than ever before - and more people are showing up allergic. Basically for allergies, we are always told avoidance is the best policy and new chemicals (drugs) are developed to ease the symptoms.

But what if the allergies interfere with the best possible treatment for cancer or another condition? I was told as a child that I was sensitive to penicillin. By sheer luck, I did not receive any for years until in my late 30's, I got a dental infection and was prescribed amoxicillin which resulted in a full body rash and hives (while on a business trip overseas - how fun. NOT!)

Later while in chemo, I discovered an allergy to benadryl (yes the stuff they give you for allergic reactions). During chemo, the protocol is to give you some combination of an anti nausea drug, a steroid to reduce reactions, and sometimes an anti-allergy medication (Benadryl in this case) to reduce reactions to the very strong chemo drugs. Well, I had a reaction for about 30 minutes and was told never to take Benadryl again. But I was not allergic to any of the chemo drugs.

But what if a patient is allergic to the best possible treatment for their illness? What then? Do you suffer through the allergic reactions (and hope you are okay) or do you go to a potentially less effective treatment? Well the new theory is densensitization of patients to drugs so they can get the best possible treatments.

Through my cancer treatment, I always wanted the option with the best possible numbers associated with it. If I was allergic to one of the drugs, I think I would want to try this new option to have the best possible odds. Consider it the same as driving an extra hour to get to the best hospital. Why not?

Monday morning

Its Monday morning and another week. I did enjoy last week without a doctor appointment and had a nice weekend away. However today its back to reality. Back to my diet. I know I have an appointment this week - too bad I can't remember when it is. I also have a meeting one night this week - I think its Wednesday. Perhaps I need to get a little organized. But that can wait a little. I need to finish waking up.

I am exhausted even though I did sleep pretty well last night. The cat snuggled up against me all night. I think that he did miss me. I think my husband missed me too. I was toying with the idea of changing my schedule and going to work tomorrow but I can't make that decision without looking at my calendar - which is on my other computer. To do that I have to get my lazy butt out of bed and turn it on and then look at my calendar. It might be more productive to just take a shower and start my exercises, which I skipped this weekend. Grr. Time to motivate.

I cheated

I am sorry to say this but I cheated. It was not a good idea. I should never have done it. Now I have to face the music.... What are YOU thinking??? I cheated on my diet! I ate all sorts of bad things and had a wonderful time doing it.

I ate chicken wings, pizza, little crabby toasts (butter, cheese and crab meat on English muffins), pasta with two kinds of cheese and shrimp, chips, guacamole, onion dip, onion pie with lots of cheese and whole milk, 1/6th of a donut, bread with butter, and a few other things that I can't remember. But I also ate salad with grilled chicken and oranges. And a little bit of wine here and there. I did not, however, eat the cream puffs, rocky road cake, M&M cookies, crab dip, or some of the other really bad things. So I did restrain myself to an extent. I am not sure I want to weigh myself anytime soon but I will eventually face the music and do so.

In addition to eating, we had a great time, watched tv, drank herbal tea, painted our nails, and generally hung out with some old friends.

Here's a funny visual from the weekend: me attempting to put a fitted double sheet on a queen sized bed. I walked around the damn bed three times, going from corner to corner. I finally gave up. I was stumped. And then my brilliant friend suggested I put the flat top sheet on on the bottom instead.

I'm trying to pack

This weekend, well more like 12 noon to be exact, I am going away for a girl's weekend. I am leaving my husband behind to deal with the ever more finicky cat. There will be eight of us for girls weekend and our policy is: no rules, no men, no pets. So we break the first rule by having two more rules, but you get the point. (And laugh when husbands call with stupid questions.)

A friend of mine has a gorgeous cabin on the side of the mountain (more than a mile past the sign that says 'narrow windy road' where the pavement ends). Its the kind of road where you grit your teeth, keep your hands on the wheel, and pray a giant logging truck isn't going to becoming down the hill as you avoid rocks and potholes and possibly deep ruts. But then you get there and its beautiful and we have a blast. We all bring and make food and have a great time. I am bringing a very healthy salad with chicken to grill on the side, making home made bread, and bringing a bowl of fruit. I am not responsible for any other diet busting foods that are being brought by others or the amounts of alcohol which might be consumed. (I already broke my diet for the past two days, so what's two more?)

So I have been trying to pack. The first problem is I have to get out of the house by myself which means I have to carry things. This could entail many loads to prevent back/ankle/arm strain & pain. I am then driving to a friends house where three of us will drive up together and I assume from that point on, there will be people to help me carry and prevent back/ankle/arm strain & pain.

Then I have to pack my medicines for the weekend. Customarily I use two weekly pill boxes and keep a couple of back up pills (used as needed) in separate prescription bottles. I have had to change my system and repack into one little weekly pill box with two back up bottles. Now I can just not forget them all and I'll be okay.

But I am looking forward to getting away. I need some getting away space. I'm looking forward to doing a lot of nothing except talking and laughing with my friends. The same group of us has been doing this for more than 10 years. So off I go. And there is no internet or cell phone service either.

Damn I have just discovered I can't find my list of what I need to pack.... OOOOOHHHHH NNNNNOOOOO!!!!!

Being healthy til we are not

Kind of logical, isn't it? We are healthy until all of a sudden, some nice medical professionally diplomatically states 'you have X'. Well, with cancer, usually, it is asymptomatic. you don't feel sick. You might think there might be a lump or something, but more often then not something is found by a screening. All of a sudden, your life has changed and you get to go to the doctor all the time.

But cancer is the funny thing. You technically are sick but you probably don't feel sick, except while in chemo, you probably don't look sick. I can say I have had cancer twice, and a few other medically maladies, but yesterday someone said to me 'but you look really healthy'.

So maybe we can look healthy even when we aren't healthy. We can pretend to be healthy and live our lives as best we can. We might have a bedside table covered with a dozen prescription bottles (I just counted) and time our day through when we take our next set of pills, but we are still here and we can't hope for more.

Something is missing

Monday I went to my new job and a walk with a friend. Yesterday I went to work all day. Today I am going to work all day. Tomorrow I need to work a good part of the day and get ready to go away for the weekend. Friday I have to be ready to leave here at noon. I feel kind of busy this week as I have to integrate my new job into my schedule but was thinking that something is missing. What is it? What's missing? NO DOCTOR APPOINTMENTS this week.

I have already had 21 appointments so far this year. This is the first week since Christmas week that I do not have a doctor appointment. Several of the weeks I actually had more than one, maybe two or three. But this week I have none. Next week I have one. The week after I have one. The week after we are on vacation. The week after I have EIGHT!!!!!!!!!!!!!!!!! So I guess it all averages out. But I am going to enjoy this week while I can. Today is going to be 80 degrees. I will go to work early and leave by 330 and go for a walk in the sunshine.

Dealing with nice people

It is such a relief to deal with nice, normal, non-neurotic people on a regular basis. I started my new part time job yesterday and everyone I dealt with, okay there were only two, were nice and normal. I think it got off to a good start. There were the normal first day glitches of needing to get passwords and keys and things like that but it went well. I worked there for three hours and then worked more at home. I will work ten hours a week, some there (5 minutes away) and some at home (in my pajamas with the cat).

Today I am off to my other job for the day which is also filled with nice people. My goal is to work there all day today and tomorrow and then work from home again on Thursday for my other jobs.

Friday I will go off to a girl's weekend with my friends. The biggest issue with girls weekend is to some how stick to my diet. Normally on girls weekend, we don't eat the most nutritionally balanced meals. We eat chips, and desserts, and chicken wings, and round it out with a little bit of drinking. I am bringing a big salad so we will have salad both nights and some apples and bananas for a fruit bowl. I hope to have some nutrition but realize that I may not adhere strictly to my diet.

Otherwise life goes on. I will work today and then go for a walk. Tomorrow I will repeat the process. How exciting. I have no idea what I am going to make for dinner but wouldn't be surprised if I have something I can throw together in the refrigerator.

Hurry up already!

'Man and mouse' not 'man or mouse'? That is the latest thought process to speed up the development of cancer drugs. Apparently there are 850 cancer drugs in the pipeline but not enough patients in clinical trials so there is a backlog. The thought is to use man and mouse simultaneously to speed up the process.

Hmmm.... I'm thinking. Do I want a drug that was 'rushed' through testing? Or do I trust the FDA and other authorities to make sure that drugs are completely safe before they are dispensed? In recent years there have been several drugs, which had successfully tested and received approval and then found to have health risks and were pulled from the market - think of Vioxx for one. New medications are often very strong and can have long term side effects that may not be discovered until they are prescribed for some time. But on the other hand if there are 850 promising medications in the pipeline, something must be done to speed up the process.

I was offered a couple of clinical trials and then was always told I did not fit the protocol. I found that the requirements were often very strict - by necessity to test a drug correctly. I also have been surprised at how few of some of my friends with cancer have been offered clinical trials. I think that it depends on where you go for treatment and if your doctor is involved in any. I am not sure where the gap is but, as the article mentions, the system is broken and needs to be rethought. All I can say 'is hurry up, will you?'

Today is Monday (duh! You knew that!) and I start my new part time job today. But first I am going for a walk with a friend. But before that I have to do my back exercises, my ankle exercises, my arm exercises. I probably should eat breakfast too.

But I was just trying to act like a healthy person

Yesterday, I was doing my normal things - laundry, cooking, went for a walk, a little gardening, etc. I try not to let my health interfere with my daily activities. I usually just ignore the aches and pains and keep on going. If I did let them interfere I would be sitting in the corner, doing nothing with my life. But often by the end of the day, my back is killing me and my ankle is telling me I did too much again.

I was doing laundry and cooking - my parents were coming for dinner and I like to create - so I was on my feet a good portion of the day. But I did sit down and take some breaks to help my back rest. I was almost done with laundry and had three full laundry hampers lined up, waiting for my husband to bring them upstairs. I could have moved them but I attempted to step over them. Attempt is the key word here.

A normal healthy person with a healthy body could have done this quite easily. I didn't step over them. I sort of stepped over them, and turned my ankle and sat down on the clean laundry - a nice soft landing. The result is a jolted, painful back and an achy, strained, sore ankle. But I have pain meds.

Today I am going to do what I did yesterday - ignore the pains and keep going. I'll go for my walk in a little bit and then some more cooking and keep moving. What else can I do?

Medical beige is such a dreary color

Who invented medical beige? Was it meant to blend in with no one's skin tones? If your skin is medical beige either your self tanner is very weird or you found some strange body paint or have a very unique medical condition. It also doesn't go with anything. Beige is a neutral but medical beige matches nothing. It wouldn't even work as an upholstery color - nothing would match it but baby spit up.

But now I have the privilege of figuring out how to match medical beige to every out fit I own. Indefinitely. I am so excited (NOT). I went back to the lymphedema therapist yesterday. The lymphedema in my arm is improved but still there and since I have been having issues with my hand swelling, I get a little fingerless glove to wear when ever it is acting up.

Originally I was told to try wearing the sleeve for a couple of weeks and doing exercises and see if it resolves my problems. But since I have problems with my hand, and some on my torso as well, I should continue to wear the sleeve daily indefinitely. Meaning all day every day. I said what if I want to go to the beach or something? I was told I can swim in the sleeve in a pool if I want. But I should keep it on all day every day, from after showering in the morning until I go to bed.

Eventually I will solve the medical beige problem by ordering a fancy sleeve from lymphedivas but for now I will focus on doing the impossible - and coordinating with medical beige.

In addition, I got more exercises to do for my arm. It now takes me forever to get out of the house in the morning because of all my exercises. Grr.

Oh, Joy, Another Big Needle Scheduled

Yesterday I went to see my pain doctor's physician assistant to learn what else we can do for my back. I have decided that physician assistants can be very useful and this one was too. But when he walked into the room, I almost asked him if he was out of high school yet. He was a bit young. But we did have a good discussion about my back and he explained things, like why I can have degenerating disks in my lower back but have pains in my upper back.

This is called inflamed facet joints. These little bitty joints run along each side of your spine. If they get inflamed they hurt. They hurt a lot. Then we talked about my bursa pains in my hips. There was lots of ouching from me as the way to determine if something is inflamed is to push on it and find out what hurts.

So the plan of action is to start with what hurts the most - the lumbar facet joints and then go on to other things, like my hips. But they would only schedule one thing and want to see how it goes and then schedule the next thing. So a big needle in a few weeks again. Oh joy! NOT. They are actually relatively painful when they go in. But the result is less pain afterward so I guess they are worth it.

Today it has finally cleared out and stopped raining. I need to do some weeding and get rid of dandelions and little maple trees before they take over. I just wish the stupid rabbits and chipmunks would eat the weeds and not my crocuses.

12 Shirts Worth of Optmism

The other day, while my husband was out of town and I was left to my own devices, I went shopping. I only went because I was done with work for the day but too early to go visit my friend and her husband. So I went to the local mall. I parked conveniently in front of Nordstroms, a store I prefer to walk through and admire the shoe department but not purchase anything.

I rambled through the mall and ended up at JC Penney where they had all sorts of enticing Sale signs. Then there was a display of tops on sale. They were nice. I grabbed a couple to try on. Then I found some polo shirts too. Then I realized I really should be over in the Petites department so I moved there. Turtlenecks at an amazing end of season price that made them affordable to upgrade/replace existing shirts and not feel guilt. In the end, I had 12 shirts. I somewhat appalled myself. But then I said why not, I am feeling good about this. I need to clear out some old worn clothes and replace with newer ones.

After I left, I was thinking about my purchase of 12 tops at one time. This is some kind of a record for me. I am not much of a shopper usually. Occasionally I can go on a little spree but usually it doesn't interest me much. In the past three years, I have barely set foot in a mall, much less to wander around and shop. Also, there has been the nagging thought, why buy clothes if I am going to be feeling too bad to appreciate them. And I'm too fat for new clothes.

But this time, I feel good about it. I feel like I need some optimism in my life. I will lose some weight. I will feel good enough to want to wear something new. Now the weather just has to change from turtleneck weather to spring top weather and I can enjoy them.