Monday, August 31, 2009

You can lead a horse to water, but you can't make him drink

No we don't have a horse. We have a cat. A large cat at that. A cat who seems to think that only I can feed him. This morning, he came up to visit us about 4 am to tell us about his food dish. We ignored him until it was time to get up. Walter went downstairs first (to check the mousetrap) and bring coffee. He forgot to feed the cat who followed him downstairs. So the cat came back up and sat on me (with his delicate 16 lbs). Then Walter came back up and got dressed and went back downstairs expressly to feed the cat. The cat wouldn't go. Walter even stood at the bottom of the stairs and opened the can. I carried the cat to the top of the stairs and he wouldn't budge even though he was looking at the open can in Walter's hand. I walked down stairs with him and over to his food dish. He followed me half way and stopped so I went back and got him and plunked him down in front of his food. Holy moley! There was food! He started eating like he was starving to death. (He had dry food the whole time. He's just picky.) Now that strenuous exercise is over for the day. Both my ankle and back hurt - thank you very much kitty.

Yes, we have a mousetrap because apparently we have a mouse. This means that Walter has cleaned the kitchen and put all the canisters on the top shelf (where he can reach them). Apparently mice might chew their way through glass and get to the flour, etc. But the kitchen is clean and I didn't have to do it so I shouldn't complain. I hate having a mouse in the kitchen... And you would think the cat would do something about this but no he doesn't. But to be fair the mouse now stays on the counters instead of the floor which are heavily cat patrolled.

These are flowers from my garden. My rose bush, which I bought when we first moved in and usually on provides a couple of blooms has probably a dozen flowers on it now. My dahlias are also starting, they are a little late this year. My tomatoes are done. They had a tough summer. But my eggplant is finally blooming, will I get any? It may be too late.

Enough about flora and fauna. I spent the weekend doing nothing because my husband thoughtfully shared his cold with me. He took Wednesday and Thursday off from work and then came home early on Friday. I started to feel sick on Friday afternoon while driving home from the Registry where I renewed my license (and dealt with a man who did not have a personality or a sense or humor). I have been feeling awful since then.

On Saturday it became clear I would have to resort to medication to feel better. I usually just take tylenol or something and keep going. There are many things I cannot take these days including a lot of over the counter medications. Thyroid medicine interacts with many decongestants - read the labels for ones that say 'if you have thyroid disease, don't take this' and you will realize how few there are. Then I am allergic to Benadryl - yes that is the drug they give you for allergies - or something in it, its full of anti-histamines. And I am already on anti-inflammatories for my back and pain meds. So I actually called the pharmacist and asked what I could take (Aleve-D) and sent Walter off to the store. But I made a mistake. If you have a 12 hour timed release medication, don't take the first one at 1pm because the next one is due at 1AM... I woke up in the middle of the night and took the 1am dose and said I'm not going to keep doing this. Yesterday I waited until 6pm to take the 1 pm dose and now I am on the 6 and 6 schedule which is much more user friendly.

I didn't do completely nothing all weekend. I lounged around, with the cat, playing on the internet, made a big pot of soup, and planned our vacation which starts in 11 days. I do feel better this morning and will go to work. But its the nearby work so I can come home in ten minutes if I feel crappy. (Or crappier than I feel now.)

Sunday, August 30, 2009

Cancer then and now

Back at my first diagnosis, I did everything I could to learn about my cancer. I bought a book that is about 1000 pages long, of which six were dedicated to thyroid cancer (and that included all the latest and greatest information). There was no internet. Information came from doctors. I tried to go to the library (and look up books in the card catalog) and all I got were medical tomes that required a dictionary and a medical degree to decipher. I have a friend who had ovarian cancer about the same time and we discussed this once. There were support groups for old people. If you were young and had cancer, you were just supposed to deal with it.

At my second diagnosis, I hopped on the internet and found out all I wanted (and more) on line. I found support groups full of people who were my age. I found retreats and events full of people living with cancer and they weren't all ancient. There is something for all types of cancer. People talk about cancer now. Its not as feared as it was.

There still are people who disappear at a cancer diagnosis. Or others that just don't get it. "Oh, you have cancer? Chemotherapy? And you're bald? You wouldn't believe what a bad hair day I'm having. I just can't get it to look right..." (Yes, this happened to me.)

I decided since I handled my first diagnosis very badly, I would take charge at my second one and find support, learn about my disease and be an educated patient. As a result, although the cancer roller coaster is no easier the second time around, I have lots of friends I can talk to about it. I have a circle of online support full of people I have never met, and probably won't ever meet. I can complain, and cry, and swear, about this damn disease and feel good that I get support that I do.

I just did a little research, the average age at a thyroid cancer diagnosis is 47 and breast cancer diagnosis is 61, and any cancer overall is 67. I must be precocious or something. The chances of getting cancer in one's life time are one in three (now isn't that depressing - but if I've had it twice, someone else should have the odds of 1 in six...). The odds of getting thyroid cancer before the age of 20 is 0.042% and odds of getting breast cancer before the age of 50 is 0.876%... Combine the two of them and you can call me unusual. All I know is that I really hate it when people say 'you're too young to get cancer/back issues, etc.' I'm not too young. I'm me and it happened so shut up.

Saturday, August 29, 2009

Thyroid cancer and a case of the warm fuzzies

Thyroid cancer is different than breast cancer. Well, doh, is a different part of your body. Thyroid cancer is considered to be a less common cancer (37,200 new cases this year, and the number is increasing) than breast cancer (192,370 new cases this year). There will also be 1630 deaths from thyroid cancer this year vs. 40,610 deaths from breast cancer.

According to the American Cancer Society, "thyroid cancer is n general, this is one of the least deadly cancers. The 5-year survival rate ... for all cases is about 97%. ...

Thyroid cancer is different from many other adult cancers in that it mainly affects younger people. Nearly 2 of 3 cases are found in people between the ages of 20 and 55. The chance of being diagnosed with thyroid cancer has risen slightly in recent years. Most of this is thought to be the result of the increased use of thyroid ultrasound, which detects small thyroid nodules that might not otherwise have been found. Most of the increase is from finding more small papillary cancers, which are rarely fatal. The death rate from thyroid cancer has been fairly stable for many years. "

However, from the NIH data on a Genzyme data sheet I was given recently are all sorts of pearls of wisdom:

"Thyroid cancer is on the rise:
- Thyroid cancer has the fastest rising incidence among cancers in the US with new cases increasing a a rate of approximately 4% annual."

They have a neat little chart that goes back to 1990 - apparently I am pre-chart - showing that in 1990, there were 8900 new cases of thyroid cancer in women and 3200 in men, for a total of 12100. That's a third of what will be diagnosed this year. In 2001, 19500 cases were diagnosed. So maybe in 1981, there were probably 8,000-10,000 cases diagnosed. Not a lot.

Then my favorite nugget of information on this data sheet is:
"Thyroid cancer recurrence is high:
- Thyroid cancer recurs in up to 1/3 of patients, and can recur even decades after initial diagnosis and treatment.
- 80% of the recurrences are in the neck alone, while 20% recur as distant metastases - the most common sites include the lung, bone, and liver
- Bulk of metastases ranks second only to age as a predictor of death."

But the absolute best 'reassuring' quotes are:
"After 10 years of remission, other cancers like breast and colon cancer are generally considered cured. This is not the case with thyroid cancer."

"50% of tumors recur within the first 5 years after initial therapy and nearly 80% do so within the first decade; however, tumor may recur as late as 45 years later. Distant metastases or serious local disease can occur over three or even four decades after apparently successful treatment. Thus, it is essential that clinicians provide lifelong surveillance for their patients."

Now that I have all the warm fuzzies going for the day. Isn't this all so 'reassuring'? Thyroid cancer (this part is my personal opinion based on the facts above) is very curable if you only look at the five and ten year survival rates which are nice and high and in the upper 90 percents. But watch out, it can come back a bazillion years later when you were least expecting it. Breast cancer on the other hand seems to be considered cured relatively quickly.

But the word cure does not go with the word cancer. Sorry. They are mutually exclusive. There is no cure for cancer. They can only treat it and hope for the best.

So where does that leave me and the others diagnosed with thyroid cancer? Apparently there are more than 350,000 of us (compard to 2.5 million breast cancer survivors)... (But I think most are hiding.) I very rarely run into thyroid cancer people. Breast cancer is highly visible with all the pink wearers and the foundations and fund raising and walks and runs. Thyroid cancer has, the national Thyroid Cancer Association with an annual meeting (where I am volunteering this year because it is local). It is a much smaller organization.

Breast cancer people walk around with pink stuff, t shirts, bracelets, and go on walks and races. People run marathons for them to raise awareness. Thyroid cancer people get light blue ribbons and bracelets (if you go to events that think to include this color otherwise, we just end up lumped in with head and neck cancers).

So this fall, October 16-18, I will head to the Sheraton in Danvers for Thyca's annual conference to see what I can learn about what is new with thyroid cancer and my risk for recurrence. I might even wear light blue with a touch of pink... But will definitely look for a return of the warm fuzzies.

Friday, August 28, 2009

Once upon a time

Once upon a time there was a young woman going off to her freshman year of college. She had taken a year off to work before going and get her head together but was still 18. She met all sorts of great people at her new college and was enjoying life. Pesky strep throat kept occurring so she went to the much maligned nurses office for some antibiotics. Three times this happened. Finally, about a month before the end of the school year, the nurse told her she needed to go see her doctor over the summer for a check up. The doctor? She used to have a pediatrician but hadn't been in a few years... Sure, she would get around to it.

The school year ended and she went off to visit relatives for a few weeks (and go to a Chili Cook Off and Jalapeno Pepper Eating Contest). By the time she had returned home, the school nurse had already called her parents to make sure she went to the doctor so she had an appointment. The first doctor said 'hmmmm' and sent her to another doctor who said 'hmmmm, I think you need a surgeon'. 'A surgeon? What for? I just had strep?' she replied. The reply came 'well there's something there and we think its a goiter that needs to come out'. Sure, goiter surgery. What a way to ruin a summer vacation.

So the surgery was scheduled for August a few weeks before school resumed. Lots of doctors appointments before then. Chest x-rays, blood work, EKG, etc. Surgery happened and when she woke up in post-op the surgeon said 'It wasn't a goiter, it was cancer. But we think we got it all. You should be fine.' 'She replied 'What? I'm tired, I'm going back to sleep.' Then when she woke up again, she started thinking, 'Cancer? It can't be. I'm too young for this.' Then she saw the giant STAPLES they had used in her neck to close up the surgery. And she found out they compromised her vocal cords and she couldn't talk correctly for a few weeks.

More doctor visits ensued. Staples out - good. Radioactive iodine to remove the balance of the thyroid (in case they had missed any surgically). On to a life time of synthetic thyroid hormone. She got her medical staging, 8 of 11 nodes positive but it was encapsulated (contained) for the most part and because she was under 45, it was called stage I.

Finally back at college a week late, she couldn't talk. Some friends stood by her. But others vanished - you see she had cancer and might be contagious. Follow up appointments with the doctors and they told her 'eat right, take care of yourself, and you should be fine.' How did you get cancer so young was the unasked question. This wasn't a common cancer and not often seen in teenagers.

A life time of follow ups. Regular checkups with the doctor but she didn't have a primary care physician, she had an endocrinologist. Annual chest x-rays to be sure the surprise found in her lungs hadn't changed. And a life time of 'with your medical background we need to be sure'.

That was me. 28 years ago. I don't often tell this story. In fact I didn't tell this story for many years in an effort to pretend it didn't happen. You may know me and not know this story because I was trying to have a life with out cancer.

I made it 26 years until my second diagnosis. So I don't have that life without cancer. But its been 2 years since my second diagnosis now. I am not a survivor. I am a person living with cancer.

Thursday, August 27, 2009

Health videos

Here's a news flash: - your diet doesn't cause cancer, obesity does contribute to it. The message is eat colorful fruits and vegetables and don't be obese to to stay healthy. I did that. Where did it get me. Maybe I should have tried harder with the beer and pizza diet. (Watch the video to see that one.)

The next video: in Ireland, they are finding that health care is expensive.
Well, DOH! And, while everyone has public health care, half the population pays for private insurance so they can choose their medical facility and be seen sooner.

But this last video gives us a look at what the rest of the world is doing.This man with an old shoulder injury went to 10 countries around the world to see how they would treat him with nationalized health care. Canada said to wait 8 months to see a doctor - on the premise that it wasn't urgent care (but if you need urgent care, they are right there for you). But two other countries recommended alternatives to surgery first. What I did take from this is that the other countries had not for profit health insurance companies. Why am I paying premiums for my health insurance so that your CEO can get millions and you will increase my out of pocket expenses?

See what you can learn by broadening your mind (a/k/a wasting lots of time) on line? I feel so enlightened. I am still very skeptical of a national plan where we are all forced to be on the same thing. I want my choices. I do think that a national plan that gets everyone insurance is the right thing, as long as we can all have private insurance if we want.

Anyway, these long days are tiring me out. I left at 720 yesterday morning and returned just before 6 pm. Today I will have a similar schedule. Tomorrow,I might get home around 430. Its a good thing Walter is home sick so the cat isn't deprived of attention (he has a cold - Walter not the cat).

Wednesday, August 26, 2009

On Being A Good Patient

In the midst of all the health care reform discussion/arguments/debates/screaming matches, one issue that is brought up periodically is the potential shortage of doctors, primary care ones especially. Here's the problem, there are fewer doctors becoming PCPs after medical school and more and more are specializing. Then the ones that are PCPs, start leaving and doing something else. Why? Because they apparently get so fed up with their patients, if this commentary is true.

I read this with interest and then started thinking (but promise my thinking was done AFTER coffee consumption). First of all, I consider myself to be a relatively good patient. I mean I usually go to my doctor appointments and try to do what they suggest (but has anyone ever flossed enough for their dentist? No I don't think that is possible.) But if they say get exercise, I try. If they say come back for a follow up, I do. If I need a test/procedure/biopsy, I try to understand why and its implications and go. But apparently I am not normal. You can read the article I cited for some examples but here are some more that I have seen.

- A friend of a friend was told they needed heart surgery after a heart attack to relieve blocked arteries. He didn't and died a week later. Perhaps the surgery could have saved him. Why didn't he do what the doctor suggested? If they give you a significant suggestion like 'you need heart surgery or you will die', that isn't something you can wait on or just ignore. Perhaps at the very least you need a second opinion to tell you the same thing and then with two doctors giving the same advice, follow it.

- Numerous times on message boards and elsewhere, I get advice 'you should be getting this scan/test quarterly/yearly. You should ask your doctor why and insist you get it. I make sure I get it regularly.' This is done with the best of intentions because it made them or someone they know feel better but it may not be the right treatment for me. Well, first can I say if my doctor says no I don't need it, I'm not going to have it. Perhaps your cancer/ailment is different than mine. Also, the doctor went to medical school and knows his stuff. While I do consider doctor's suggestions just that - suggestions - I also don't demand stuff that I don't need.

- Also hear about people saying 'the doctor prescribed this but I decided not to get it filled'. Okay that's one thing when you get strep and an antibiotic prescription with a refill and are told only to refill it if you are still showing symptoms. But if you see a doctor and need thyroid medication/blood thinners/pain meds to treat your symptoms and decide not to take them, don't go back to the doctor and blame them for not healing you. Its a two way street and you both need to be going in the same direction.

Finally, don't get me started on people who cancel follow appointments or just skip appointments and wonder why they are still sick. Never mind the people who show up late and demand to be fit in, and make the doctor and staff run through hoops around them.

I think doctors become doctors because they want to heal people. But you have to let them do their job too.

So yesterday I went to the doctor (and showed up on time) for a follow up on my ankle. Its better. The chip on the fibula is not significant. Its just there and will eventually smooth out and be fine. Its the strained ligaments from the sprain that take a long time to heal. Now I get to be out of my air cast for an additional 30 minutes a day and completely out of it when I go back to see her in a few weeks. Then I will have a few PT visits to get exercises to strengthen it. I also get to go to the gym and ride a stationary bike - which I did as soon as I got home. I will start going three times a week for now. Then I will probably ask to see a physical trainer to learn what more I can do with weights to get back in shape - its hard to lift if you are on a 20 lb weight restriction. But that's not for a few more weeks.

Last night we celebrated my father's 81st birthday and had a nice dinner that went way too late. So now I am running late and want to leave for work in 30 minutes and haven't showered or had breakfast. Hmmm... Is this possible?

Tuesday, August 25, 2009

Further Proof: Not As Good As You Think

I am very much against the large businesses who come in and kill off small town America by undercutting the locals pricing and putting them out of business. Then some even go on to create mega centers and force people to drive a long way to get what they need, jack the prices, and the consumer gets stuck - and small town America is still gone. (But that's not my topic today.) I have never really been a Whole Foods shopper. I can't quite figure out why people want to pay so much more for produce and other healthy food. Never have, never will.

I also greatly dislike their business model where they take over the smaller local businesses, force the food co-ops (remember them?) and other small independents out of business based on the premise and its 'organic'. Yes, they carry a wide range of weird vegetables that are pretty cool (purple carrots when over cooked, look pretty much like orange carrots) but their policies suck and their pricing is way too high and talk carbon foot print on a coconut from Thailand...

Let's stick with the easy one first. Carbon foot print: if you are buying produce from South America in the middle of winter, it needs its own frequent flyer program, it is actually not very fresh, and its probably really expensive. Yes, sometimes its nice to have some thing fresh in January but pay attention to what you get where. I shop at local farmer's markets in the summer, a small local farm stand in the spring and fall, and a big local farm stand (because the small one closes) in the winter. I know not all the produce is grown right there but it is relatively local. I know I get produce from outside New England. But I also usually know where its from and it usually didn't come by plane.

WF pricing is astronomical. I just went to the website to find a weekly flyer with pricing to cite and wasn't really surprised they don't publish their pricing because everyone would rethink their shopping destination. I used to work near a WF and we used to joke that WF's salad bar was the only place you could buy an $11 salad for lunch (along with the ever present fruit flies and multitudinous mayonnaise based items). So what is so good about Whole Foods? I haven't found anything yet (except I can buy quinoa in bulk and that's the only reason I go there, ever. And sometimes I just buy it in little boxes from Trader Joe's.)

But the latest from their CEO, just really gets me. Did you read his editorial in the Wall Street Journal last week where he provides his views on health care reform? Perhaps he should watch his words a bit more carefully (especially after the Wild Oats incident). He has managed to anger many of his customers so I guess he gets points for that. But perhaps he should start polishing his resume and submit it to Walmart.

Wow, I just wrote a lot. Okay, so maybe this is a sore point for me. I used to shop at two local chains, Bread & Circus and Wild Oats, and the local food co-ops, along with farm stands. I don't shop at WF (see quinoa above). I always have found them too expensive. I vote with my feet. You may ask how does this relate to cancer? When you have cancer they tell you to eat right, more plant based, less meat, blah, blah, blah. WF would be a great place to shop if you could afford it while paying your medical co-payments.

But enough soap box for today. I have to get ready for a busy day: a doctor appointment for my ankle, errands, work from home, coffee date, family dinner for my father's birthday. But at least I don't need to rush off this morning. I have a whole hour to play on the internet before I have to leave which is most unusual for me - my life is almost like working full time these days.

Monday, August 24, 2009

On Eyebrows

I think the average person just regards their eyebrows as part of the features on their face, that are ignored, plucked, tweezed, shaved, unibrowed, etc. Then when chemo removes them for you, you realize how important they are. I was perfectly happy for most of my life to have eyebrows and never pluck them (they just aren't that furry - I'm sure you needed to know this) and then chemo came along and TOOK THEM AWAY. Probably the worst few weeks of my treatment, were when my eyebrows (and eye lashes) vanished.

See the thing about cancer, is you walk around looking fine for the most part and then you start losing your hair so you stick on a wig or a hat or nothing and go about life. You might look like you are sick but not really. Its when your eyebrows go away, that you get that pale 'really sick' look. One of the toughest times for me was when my eyebrows and lashes went away. They hung around for weeks and months of treatment and then decided overnight to disappear - or so it seemed. I started to look like I was really sick when in fact I was through most of my treatment. I was not a happy camper for those few weeks until they grew back. American Cancer Society's Look Good Feel Better program (which is a wonderful thing) teaches you how to draw in brows and lashes. This proves that I am not alone in thinking about losing eyebrows and lashes - so little but so significant on your face.

There was an article in the paper (there I go reading again) about a woman who similarly lost her brows and was upset. Then she found out that the latest fashion trend (and I use the term loosely) is for eyebrowless models! Are they going for the chemo patient look these days or something? Is this the latest trend that I missed out on? Is it the chemo patient/prisoner of war look with rail thin models without eyebrows? Who had this horrible idea and thought it was a fashion trend? (Who comes up with fashion trends anyway - like who came up with the first leisure suit, underwire bra, or super high heels?)

But its Monday morning and back to work. I have to go to work and then go lead a meeting for a few hours this afternoon. I will be busy. I also have unpacking to do and reorganizing - how does camping stuff expand so much while one has their back turned? I am also trying to figure out why I have some weird rash on my stomach and arm. It looks and feels almost like poison ivy type but I didn't see any and how would it get on my stomach? I took a shower and covered it in hydrocortisone cream and will vainly attempt to ignore the itching (and suffer in silence).

The good news is that my air cast survived its bath and dried out substantially in a very short period of time. It got quite muddy and then the padded liner got wet so I washed as much as I could. I hoped it would dry over night but it dried in a just a couple of hours in the sun. I put an ace bandage on my ankle in the interim. Yes my ankle feels better right now but since I ended up icing it on Saturday I am not sure its healed but the moment of truth is tomorrow when I go back to the doctor.

Sunday, August 23, 2009

Its Obvious To Me

Its obvious to me. Its not my driving skills. Its everyone else on the road. I am the most perfect driver there is. Everyone else is a moron, or an OMWAH, or just a plain old fashioned idiot. I decided this as we were driving home from our camping trip this afternoon and people were in my way, or had the nerve to drive the speed limit. (I am sure everyone will disagree with me, but its my opinion.)

We had a very nice weekend camping (except for the slug incidents). It poured rain all the way there but stopped while we set up. Yesterday it only rained when we were inside. Last night it rained all night.

My back decided that it disliked sleeping on an air mattress so I am in the most pleasant of moods since I have been up since 4 am. I couldn't get comfortable and ended up sitting in the car reading and trying to get comfortable. Everyone else started getting up around 730. We packed up in the rain and headed out for breakfast (at the worst restaurant on the planet where we waited an hour for our food after ordering - Jersey's in East Berne, NY - don't bother unless you have a lot of time to spare). We ate our food in about five minutes and then hit the road home.

Also, another drawback to the weekend is that air casts are not meant for muddy rainstorms. I put a trash bag over it but it ended up leaking and getting all wet and muddy. I washed it off and it is now drying in the sunshine. I am sitting with my ankle in an Ace bandage and ice on my back.

Back to work and reality tomorrow.

PS The first slug incident: My four year old nephew murdered a big yellow slimy slug with a rake - to the delight of two of his siblings. The second slug incident: I was standing on one foot with a flipflop on it and a big yucky yellow slug climbed up on my toes.

Friday, August 21, 2009

Is it wrong?

Sometimes we must stop and ask if something is wrong. Or say 'what's wrong with this picture when Octomom expects a reality show will pay the bills for raising her 14 kids'? (Actually, we didn't need to ask what's wrong, we really should have asked for a sanity check but that's another story...) I started thinking about things that are just plain wrong yesterday - like getting your car smashed by a grocery cart while shopping - not me, a friend. A FB friend said something about how she hadn't cried since being told her mother had died and was wondering if that was wrong? You can't force human emotion and she will cry when she is ready. But then there are the other things you just stop and wonder, is it wrong?

- Is it wrong to call your pet little nicknames that if you called your sibling or spouse them, you would be in trouble?? We call our cat things like 'lard butt'. He just thinks we are paying attention to him and doesn't understand the words but when you are trying to cook a meal and have to walk around the giant cat sprawled all over the kitchen floor its easy to resort to 'other names'

- Is it wrong to assume most reality shows are rigged in some way? How do they pick those people for the home renovation shows - I've got a kitchen with some lovely wallpaper and an ugly tile counter. Some of the people you really wonder about. Particularly the ones who were on the show where they would have to eat worms or something... Who dreamed up these shows anyway and why do we bother watching them?

- Is it wrong to be disillusioned by professional athletes and the entire professional athletics system with all the doping scandals? Some people really do win without taking drugs and should get respect. But anyone who take performance enhancing anythings, should be outed and punished. The baseball players who were clearly on steroids - compare pictures of them at five year intervals and you can get a good idea of who did and who didn't - no Hall of Fame for them. That should be for the players who earned it with out chemicals.

- Is it wrong to expect civilized debate on healthcare reform? We live in a two (or more) party system and dialogue and debate can be expected. But I have no time or respect for the people who compare it it nazism or that picket the debates to harass attendees. (Similar to people who picket medical clinics where abortions are performed but I wont open that discussion here.) You are entitled to your opinion, I am entitled to mine. We are both entitled to discuss it and make our opinions known. But I am not sure we are entitled to be harassed by an opposing position by yelling and shouting. Especially if the people doing the yelling and shouting didn't take time to find out the truth of the matter or have their own personal agenda.

- Is it wrong to expect common courtesy while shopping, in a restaurant, or any where out in public? By this I mean, lose the cell phone and chewing gum, while at work and say hello and do your job. I am here because I want to spend some money, which you were hired to take and put in the cash register. If you don't help me I'll take my business elsewhere. Actually I am a big fan of basic customer service. I don't necessarily need the super high end kind but the basics are fine. My husband hates when I complain in restaurants but I often do. I don't want dirty silverware. When I ask for a glass of water, I expect it in a reasonable time period. If I have to keep asking for it, your tip will decrease. If I have to ask to speak to a manager, I probably will not return to the establishment. I have no time for idiots.

- Is it wrong to expect common courtesy while at the doctor's? Last week, I was really peeved at the doctor's office which kept putting me on hold and leaving me there. I finally spoke to a supervisor and was promised a formal apology which has not arrived. I have since been there in person and did not bring up the incident again but I did get to see who were the idiots I was dealing with - the one who left without telling anyone and the ones who put me on hold and left me there. What I have learned is that if I call there and get put on hold for more than one minute, I will hang up and call back and ask for the manager. I do have to call them back next week...

- Is it wrong to expect medical advances to provide pain free living? (Note my focus these days is not current cancer, but just plain old pain because its a day to day thing.) I know there have been lots of advances in medical treatment and there are lots of things available but to have continued pain issues that aren't going away - combined with my stupid ankle, is annoying me to no end. So maybe I am asking for the magic pill - go to the doctor with whatever and they prescribe a single magic pill and voila, you are healed. Perhaps I need to lower my expectations, but I don't want to.

- Is it wrong to expect the Star Trek world to be ours some day? Not the going into new galaxies and all that but the part where they talk about 'back in the 21st century when they eradicated cancer and a bunch of other diseases...' Or do I need a reality check?

But this is all my opinion and you are entitled to yours as well so feel free to disagree, politely. Now I have to get ready to go to work...

Thursday, August 20, 2009

Losing my cherub like demeanor

If you ever watch stand up comedy, you will know I am referring to John Pinette, a local guy who has done pretty well for himself. One of his famous lines is about 'losing his cherub like demeanor' but of course can I find a video of this to share? NO! When we saw him last year did he use this line? NO! So you will just have to suck it up and watch this video of him and his thoughts on camping.

Anyway, what I am saying is that my back hurts more because my ankle hurts so I walk funny and strain my back. This leads to extreme crabbiness, apparently on my part (according to my husband). But it also can lead to crabbiness on other people's part (this is my personal opinion and my husband will dispute this). But I am on anti-inflammatories which help with swelling in both my ankle and my back - the little joints in my hips and along my spine are inflamed which leads to pressure on the nerves which leads to pain (which leads to crabbiness apparently). I am also on pain medication which is helping with my back but not completely. It focuses on neuralgic pain. I have other types of pain as well. I am not sure what to call them but I will say they hurt. Well, I have sprained ankle/chipped bone pain which is another type of pain.

So what am I doing for fun these days? Working every day (believe it or not, I do go to work every day - I fit it in between doctor appointments). We are also going camping this weekend. Yes, I will take my aching back and ankle into the woods and sleep on an air mattress (which is pretty cushy as camping goes) and enjoy the great outdoors and my nieces and nephews. I will not go hiking. I will sit in a chair with my foot up, a good book, and supervise the lunches so they don't get stolen by wandering bears (a la Yogi Bear). I might go swimming. But I will do lots of sitting. Perhaps I will leave my crabbiness behind.

Today, I wanted to get to work around 730. But since its 7 and I haven't taken a shower yet, that apparently will not happen. But I will be there by 8 and work until 3 and then meet a friend for coffee. And then possibly share some more crabbiness with the world...

Wednesday, August 19, 2009

So now what?

First of all my PET/CT scan was clean. Which is good news. It means I have a degenerating disks in my back as well as other problems with it that will just continue to get worse. Yes, if I did have bone mets in my back, they could treat them (and they would probably eventually spread and kill me) but at least I would better be able to be treated. (Don't ask people who are in pain to be rational. I just want my back to stop hurting.)

So yesterday I went to have my PET/CT scan. I had to arrive at 845 for prep for a 10 am scan. They inject you with a radio-isotope which reacts to glucose which is a sign of fast growing cells - such as tumor growth (tumors are fast growing so they have lots of glucose activity). After the injection, I had to sit still for 1 hour without moving so the glucose goes evenly throughout your body. You can't bring a friend to talk to you because you are emitting radiation. You can't listen to music or read a book. I fell asleep and when the tech came back to get me, he knocked on the door, woke me up and scared the crap out of me - but I had a nice snooze.

Then I went for the scan. Its a big round donut machine and they slide you around on a table and scan you. You just get to lie there, not move and do nothing. Its boring. They have a nice back lit picture on the ceiling that you can only see when you are out of the machine - not very interesting for the duration of the scan. (I did have an overwhelming urge to sneak in a Sharpie and write 'Kilroy was here' or something on the inside of the machine but successfully over came that urge - for now. Next time? Maybe I'll bring my pink Sharpie.) I did as instructed and lay still for the duration. I was told I could have my eyes open or closed but then there is a little warning sign inside the machine: 'don't look into the laser' so I shut my eyes. Perhaps the tech needs to take a trip through the machine and see the little sign...

I had an 11 am apt with my radiation oncologist, who had ordered the test, to get the results. I asked when they scheduled it if that was enough time to get the results and was told yes. I asked when I arrived yesterday if that was enough time to get the results and was told yes. I asked when I left yesterday (perhaps I have issues here?) if that was enough time for to get the results and was told yes. I had a few minutes to kill and went to find if they had a lost and found to see if by any mere chance, my favorite water bottle, that I left behind a few weeks ago, had been turned in...

Then I went to my doctor appointment. She was running about 30 minutes late but that was okay. The nurse put me in the little room and I told her I was there for my scan results so she said she would find them and give them to the doctor. Then the doctor came in and was confused why I was there. I reminded her she had seen me last week and I was there for my PET/CT scan results. Obviously she hadn't seen the nurse before she came in. She said if I had my exam yesterday, the results wouldn't be ready. I said that was the whole point of the appointment and I was told they would be ready. She went and checked and came back and said it was clear.... BIG sigh of relief on my part. She left. I left. But now what?

I went to lunch with a friend who is Stage IV and has PET/CT scans regularly. She ws surprised I got the results so fast as hers are looked at by four specialists before getting results (a specialist each for each section - heart, liver, etc or something). Maybe that was just the preliminary read and I could have changes. This does happen with some things. For example, if you have surgery, they will often do a quick look to make sure something is benign but then do a real pathology report which takes a few days or longer to confirm this so you can get different results later on. Me? I'll just stick with clear results but I will call next week and ask them to send me a copy of the final report. Actually I am curious as to what it will say. I don't really know what is recorded in a PET/CT scan and wouldn't mind finding out. Also, 'they' (this is the mysterious, overseeing 'they) tell you to get copies of all your medical reports. I also forgot to ask the doctor what my next follow up plans are. I was seeing her every six months and am not sure if that will continue.

So now what? I have back pain that is being treated that hurts. My ankle still hurts (my husband says it is because I did too much yesterday - who me? - I walked around the damn hospital). My air cast helps my ankle but hurts my back because I walk and stand funny. I will take my pills and suffer in silence until I go back to the back doctor in November. I go see the ankle doctor next week. Perhaps I can get out of this rut of weekly doctor appointments. I still have to worry about cancer cooties, but less so now that I had a clean scan. But I would really like to be healthy again.

Tuesday, August 18, 2009

Pets are supposed to relieve stress

Question of the day: What is the WORST thing to spill in your refrigerator? Maple Syrup - all down the back and on the bottom! STICKY! We just had a refrigerator cleaning party...

I have seen this in the news and all sorts of research that pets are supposed to relieve stress. Well apparently our cat has not read that part. He is CAUSING stress. First he is playing hide and seek. Sunday night we couldn't find him anywhere. I looked and looked (including outside in the yard with a flashlight). I couldn't find him. I was very upset. He is an indoor cat who has been known to sneak out once in a while but now he has limited use of his rear paws and needs insulin every 12 hours. So in the middle of the night I got up to check and see if he was outside the front door. No, he was inside, sleeping on the back of the sofa with out a care in the world.

Then yesterday morning, same thing. We were trying to leave for work and couldn't find him anywhere. Again, need to make sure he is inside so he has food and water, etc. We looked and looked and looked. And finally found him sleeping under the sideboard in the dining room on top of the little chest that is there. Finally we could go to work. So Walter leaves. I finish getting ready and am leaving. Walter returns. He is missing his ID card... After searching we determined it fell out of his pocket while searching for kitty... How relaxing is that? The cat was relaxed. We weren't.

Last night, yes I admit we are having a tiny little heat wave and he has lots of fur, we were watching TV with the cat sitting in the front entry way. We decide its time for bed, no kitty. We start searching again - or I start searching and Walter starts telling me, he'll be fine. But for my peace of mind, I need to track him down. He's not in the dining room on top of the chest under the side board. No he is on the floor in the corner, looking at me like a disturbed his rest. Where's my relaxation kitty? C'mon! Its time to share the love - well it was at 430 this morning, he wanted food. I wanted sleep. But at least I knew where he was.

Today is time for another pet. I have a PET/CT scan (as opposed to a pet cat) this morning. It is the test to hunt out any lurking cancer cooties. Am I stressed? Well, yes (and hunting for the cat all the time doesn't help!) but I will get the results this morning as well and either go out for a nice lunch with a friend and give myself the rest of the day off. Or go out and have a large margarita with lunch and give myself the rest of the day off.

Monday, August 17, 2009

The weekend evaporated

The last time I checked,it was Friday. And now it is Monday morning. I have to be in work in about 1.5 hours. I have not yet showered or gotten organized or done my exercises. I will motivate shortly and do these things. But I am trying to figure out what happened to the weekend. It vanished. Friday afternoon we drove up to my friend's cabin in the mountains in New Hampshire. We made dinner and hung out. They showed up late and had a later dinner and then we all went to bed really late.

Saturday we got up and went off for an adventure. We were going to drive up Mount Washington but there was a pesky bike race going on (yes the race up the 8 mile road up a 6000' mountain and I know people personally who are that crazy). Instead, we headed over to a local ski area where we could ride the gondola up to the top. But they also had the ziprider ( which we rode. Well, three of us did. The five year old was too little and his mother took pictures.
That's Walter on the right and me on the left - note the fashionable air cast (the accessory of the summer). It was a blast! We had a great time. I can't believe I did it but am glad I did. My one concern was my ankle and would I be able to ride it without hurting it. It stops at the bottom using a big spring on the cable so it was actually quite easy. (The hard part was walking up from the chair lift to the top of the ride (and Walter retrieving his hat the fell off when I raised the safety bar on the chair lift without saying anything - yes I felt guilty I couldn't go get it for him.)

Our goal was to go to the grocery store and buy stuff for dinner. The grocery was closed so we had to go to a Walmart (which was the closest store for 20 miles). A piece of advice. NEVER BUY FOOD AT Walmart. We got rotten onions, mushy tomatoes, corn with worms, petrified garlic, and borderline potatoes. It was horrible food. (Actually never buy anything at Walmart.) If we had known the grocery was closed, we would have gone elsewhere to shop.

We went back to the cabin and made a giant dinner and then had a a fire in the outside fire pit at night and stayed up late. My friend, her husband, and my husband ganged up on me about doing too much. (Of all the nerve!)

Sunday we had a big breakfast and headed home - 3+ hour drive. I was exhausted for some reason and took a nap. The cat was very glad to see us but when it came to be bedtime, he was missing. I looked everywhere including outside (where he is not supposed to be but has been known to sneak off to). Finally I gave up and went to bed. In the middle of the night I woke up and said I'll go see if he is hanging around the front door. He was sitting on the back of the sofa and gave me a look that clearly said 'why are you bothering me when I am sleeping?' But I felt much better and went back to bed.

One little piece of news these days. Evidently there is a shortage of radioisotopes used for medical testing. I hope they have one for me and don't run out before I get there! 'Sorry ma'am we are out of radioistopes. Just drink some green Mountain Dew and will follow that in your system instead.'

This morning I need to motivate and get to work. That's it. Nothing exciting. No walks, coffee with friends or anything. Just a day of work and perhaps the farm stand. So maybe I do lead a boring life.

Friday, August 14, 2009

A Cancer Diagnosis Can Cause Depression

Wow! Who would have thought? Here's a very scary medical diagnosis that they are going to treat the hell out of. And then they say 'that's it you're done. There is nothing else we can do right now. Go back to your normal life. If it comes back, come on back and we'll try again.' That is the mind of the cancer patient at some level. Basically your world gets side swiped by a semi and then you are supposed to get back to normal and your support of medical doctors and nurses for regular support, just go away when treatment ends. You have sporadic follow up appointments but not the day to day hand holding. Damn it I have cancer! Take care of me!

Jerry Remy (who I do not know) but is an announcer for the Boston Red Sox (go Sox!). He just came back to work after being treated for lung cancer, and, oh yeah, by the way, depression as a result. This article summarizes the situation pretty well.

This time when I had cancer (sometime I'll tell my other cancer story where I did everything wrong), I said to myself, I am not going to lose years of my life being miserable. So when I was first diagnosed, I found a support group which met weekly and I ended up attending for almost two years. Then I found another support group that was different for newly diagnosed patients and we still have coffee or dinner once a month. Then I found a therapist who also had breast cancer and keeps me sane. I also go to a couple on line communities for 24/7 support. And I have anti anxiety medication (to go along with the rest of my pharmacy) to keep me from stressing out. I also have lots of cancer friends who I meet for coffee or something and have little discussions on life, and oh that nasty little cancer thing... And I give myself little mental check ups periodically. How am I doing? How's my stress level? What's going on with me?

My point is a cancer diagnosis has a massive impact on one's being at every level - from the 'why me?' to the 'am I going to die?'. You can't do it alone. You need some support. Maybe its you and your spouse allocating special time to support each other. Maybe its a more formal solution. Maybe its multi-tiered support like I do. Support for all different kinds of thing and in different ways.

So if you are diagnosed with cancer, don't just sit there. Figure out what it will take to keep you on an even keel - before you start sliding down one side or the other. Start working on what its going to take for you to be somewhat happy. Everyone is different and just because you friend's cousin with a similar diagnosis liked this support group, you may not. You may want a therapist. You should explore options and see what's out there. Cancer is an isolating disease (as you watch people flee from your life at the C word). So find something to fill the gaps.

So enough orating (I have been doing a lot of that recently. Maybe I should buy a soap box). I am up early because I need to go to work early so we can go away for the weekend before traffic gets bad. But here I am procrastinating on the internet. We will be in the land of no cell phones and no computers (yes there is still such a thing - its called mountains which block all the signals). My goal is to get to the top of a mountain (by artificial means such as a gondola or a car) and see the world from up high. I haven't been hiking in a few years. Pesky cancer crap in the way. So I am feeling withdrawal. We have a new cat feeder for kitty who seems very nice and works at a vet so he won't be lonely and will get his insulin.

Thursday, August 13, 2009

Here We Go Again

They changed their minds!!! A new study is released called 'Micro tumors rise on the risk scale: May alter Breast Cancer Treatment'! Hello! Well now what? that's what I had! Did I get the right treatment or was the old treatment I got up to snuff with these new 'treatment alterations'? Who do I ask? What do I do now? MAKE UP YOUR MINDS!!!! Here's my favorite quote: “It really does look like our biases are wrong,’’ he said. “For the first time, it suggests that isolated tumor cells or micrometastases do have biological significance.’’ Ahem, I had a micrometastases. I don't feel very warm and cuddly right now.

Also, the second half of the article goes on to say the advice they gave breast cancer patients about exercise and lifting weights and being careful with the affected side(s) is now considered to be wrong. Well since weight lifting has never been a big part of my life, I am not feeling less cuddly here. Simply aggravated. Here don't do this. No we were wrong. You can do that. In fact its better if you were. You weren't? Well, start now. Yes, now. We know we were wrong but that means you were wrong to agree with us so you must do the right thing now! AAAAAARRRRRRGGGGGHHHHHHHH!!!!!!!

Let me also share with you my lovely day of doctor interactions. Well not doctor, but idiot staff interactions. I met with my doctor and she thinks I am doing well but need a follow up test to be sure there are no cancer cooties lurking anywhere (cancer cooties is my new technical term - if you don't understand it, try a dictionary). She said someone would call me. They did call me but I was at work.

So when I left work at 330 I called her. They said 'she's talking to her son' and put me on hold. FOR TEN MINUTES! At which point I hung up and called back and said 'I'm calling for Ann, returning her call. I called before and was put on hold and no one ever picked up.' After more than five minutes on hold, I was told they didn't know where she was but that they would give her the message and she would get back to me. So I called again after 45 minutes (trying to get this scheduled before the end of the day) and was put on hold for another 5 minutes at which point some one picked up and asked who I was holding for, put me back on hold, and never returned.

So I hung up and called again and told the person answering the phone (in the nicest possibly way) what exactly I thought of their customer service and why was I being put on hold and no one ever picking up to tell me she wasn't available. This nice woman actually found the notes (5 minutes on hold) and scheduled my cancer cooties test and then let me tell a manager what exactly I thought of their customer service. Apparently, the person who called me had a family emergency and had to leave, her son also works there. But she left without telling any one. Also, no one should have left a call on hold that long. Finally she promised me a formal apology.

I find this frustrating. Its a professional office. If you see a call on hold for ever and ever, don't you think someone should pick it up and resolve it instead of just leaving it flashing? Instead of picking it up and asking who they are holding for and putting it back down and never returning? I understand family emergencies but shouldn't the person have told someone she left as she went running out the door? Several breakdowns in protocol and standards there. Very frustrating for the patient. I shall remember this when I am forced to deal with them again.

Anyway, so my blood pressure got a work out yesterday. Otherwise a normal day at work. I attempted to purchase a light fixture for the upstairs bathroom but to no avail. We have a weird space that is short but light needs to hang out over the mirror but not too low because of the cabinet doors. Unfortunately the only one we have seen which works is the ugly old one. Today I will return the one I bought yesterday and take one last look. Then the electrician is coming to give an estimate of all the work to be done. Then the new cat sitter is coming to learn about our cat and his demands (he doesn't have needs, just demands). Then I am getting a hair cut - I am starting to have a bad mop. Finally, I think Walter will end up cooking dinner. But then I have to pack for the weekend. Am I overscheduled?? Possibly?

Wednesday, August 12, 2009

What I want to see in healthcare reform

I think there are many things I wcnt to see in health care reform but one place I believe cannot be overlooked is the issue of medical errors. A recent study showed the spread and depth of this problem. My thoughts are this:

- There are fewer doctors and nurses than there are patients. So they are each seeing several each day. I am sure I would be confused by things by the end of the day. You start to get tired and its easy to make mistakes.

- Anything can be miscommunicated. Communication from and to the patient and between medical professionals must be clear. Systems must be used. Every time I go to the doctor I am asked to verify my name, address and date of birth several times as identifiers. A friend told me recently that she went for a test and they didn't ask all the identifiers and almost gave her an injection meant for someone else with a similar name.

- Patients need to be alert and aware. Its your body. You only have one. Doctors and nurses are busy seeing lots of patients. If you are going to the doctor, be sure you know why and have a list of questions on any issues. If you are going for a procedure, make sure you know exactly what will be done and that the nurses and doctors all know it too. When I go for my back procedures, once I am on the table, before they start, they do a check and all confirm, my name, address, age, date of birth and what they are about to do. When I had knee surgery, the doctor came in before hand and wrote on the operating knee a big fat "YES" in marker, and a "NO" on the other knee.

All that being said, everyone involved is human and can make a mistake. When you are not feeling well, a big reason for being at the doctor, it can be harder to communicate clearly or to understand what you are being told. There are also horrible tragic stories of unwarranted deaths or life long disabilities due to medical errors.

But the point of all this is that many states now don't even have a way of tracking medical errors. There are no laws in place for this. This is where health care reform should start. Go read the article in the link and look at how your state is doing for medical errors. Then write your senator. This needs to be part of medical overhaul.

Off my soap box. Today, I am calm, cool, and collected (ha, ha, ha) as I head to the radiation oncologist for a follow up. Little does she know this will also include a discussion of the state of my bone structure which seems to be having some issues - to say the least. I am hoping for some mega reassurances in the form of some fancy tests that will clarify that there is nothing by old age going on in my back. Then off to work and then back to the hardware store to buy another light fixture for the upstairs bathroom.

I will say, that in some ways my days are easier when I am not trying to fit in my daily walk.

Tuesday, August 11, 2009

Waiting for inspiration

I am sitting here waiting for inspiration this morning. I am not feeling inspired. I had a long day yesterday. I worked, met a friend for coffee, came home and worked more and then after dinner I finished my proposal with a deadline and sent it off just before 9pm. It was a long day. Today is another busy day but I hope it will be more positive.

I think one reason that yesterday was so long is that I had a phone conversation with someone who clearly doesn't get it. When someone has health issues, it is not a good idea to make jokes about the things they used to be able to do. I used to be able to go hiking, roller blading, to the beach, and basically anything I wanted. Right now with back pain and an ankle in an air cast, there are tight limits to how much I can do. A joke about going hiking is not funny. An offer to put me in a wheelbarrow and taking me along was funny.

Maybe I am overly sensitive these days. This nagging back pain crap combined with ankle issues (how does one limp on both sides without hobbling?) may have made me overly sensitive to comments. Maybe my stress level is up again because I go back to the radiation oncologist for a follow up tomorrow. Oncologist visits are always a stressor because they are the cancer doctors who tell you bad things or send you for nasty tests/procedures/biopsies.I am sleeping these days which is good - Lyrica is supposed to help with that. But still. Another issue is that I can't go for my daily walk which is a big stress releiver. I also can't really go to the gym. I can't do things that involve putting weight on my ankle - treadmill, etc. I am on a 20 lb lifting limit from my back so I can't do weights. Perhaps I could go ride a stationary bike... Hmmm... May have to try that one. But the last time I tried a stationary bike it made my back hurt. Grrr...

Anyway today I am meeting a friend for coffee (I have lots of coffee drinking friends), going to work, and the farmers market for some veggies. But I will only get a little bag of veggies and maybe take two trips to my car or something... Last week, the farmer's market made my ankle hurt.

Is there anything that doesn't make my back and/or ankle hurt? If I lie down with my ankle elevated and my back positioned properly on an ice pack, it can be relaxing, briefly. What fun. Well off I must go for another day of fun and games.

Monday, August 10, 2009

Letter of the Day: P

Today's letter of the day is: P. P stands for all sorts of lovely words: purple, pain, pills, procrastination, and, oh yes, positive thoughts.

Purple is for my ankle which has lost its purpleness after four days in an air cast. It also feels better most of the time in the air cast. By the end of the day, it complains. Perhaps I have been doing too much (no, not me) but this weekend I primed and painted the miniscule downstairs bathroom, had a friend over for dinner, did some house cleaning (it was time for the annual event), went to the grocery store, and went to Lowes to pick out bathroom fixtures. That was lots of walking. When my left ankle hurts, I can't really limp because it makes my right hip hurt. So I just sort of hobble around.

Pain is for my ankle and back - between the base of my skull down through my hips - and actually any where it decides to appear in between. How comfortable. It appears at random moments when I am doing nothing or when I try to do something like move my leg.

Pills are to keep me going. When I get up in the morning, I take my thyroid pill so I have a thyroid function and I take Tamoxifen to keep the cancer cooties away. An hour later, after eating something, I take an anti-inflammatory to reduce the pain in my back and I take a Lyrica to help reduce the pain in my back in a different way. Later on in the day, I take vitamins to be healthy and lots of calcium and vitamin D for my osteopenia. At dinner, I take more anti inflammatories and Lyrica because they are two doses a day. Before bed, I make an assessment, do I need anything from my drug store to help me sleep. (Maybe I should have another P: Personal pharmacy...)

So I have my own little drug store here and reading all the labels has convinced me that I need to switch to an alcohol free life. Not that I thought I was having a problem or anything but we would have wine with dinner most nights. Now I have several medications that say 'avoid alcohol', especially my newer meds. So no more alcohol except on rare occasions.

Procrastination has allowed me to have a weedy garden and to be behind on my contract work. I have to go to work this morning but have to come home this afternoon and work on a number of things that have deadlines of tomorrow morning.

Postive thoughts should occur daily. What is something to smile about today: my flower garden is blooming, my vegetables are kicking in - fresh peppers and tomatoes tonight, my ankle seems to be healing, my husband and cat are doing well, and plan on returning to a healthy life someday...

In the meantime, the question of the day is, am I turning into a borg?

The knee brace is from a previous knee surgery but when combined with my ankle aircast...

Sunday, August 9, 2009

On Air Casts and Ankles

Its nice that after only a couple of days, my ankle actually feels better in the air cast. Yesterday I did all kinds of things and it didn't hurt until late in the day and then only minorly. I weeded the patio - which was a jungle of grass growing up between the bricks - sitting in a chair which I moved around. I primed and painted the downstairs bathroom - now it is a nice bright white instead of light blue and silver foil swirled wall paper. I vacuumed. I did laundry and folded it. I did not carry things. I did keep my ankle elevated. And my back still hurt.

But maybe this Lyrica is helping my back. It hurt but not as badly as before. And the really nasty places only spoke up a couple of time. It is still early to tell I think. I took it Thursday night, Friday night, and twice yesterday. I am supposed to take it twice a day but I was concerned about dizziness as a side effect and didn't want to take it on a weekday where I had to drive until I found out how it would effect me.

Last night we had a friend over for dinner. Because we are such great planners, Walter said to me at 5 pm, 'we should have grilled outside'. Well dinner was already planned and started inside. So we compromised and ate outside last night. We are planning dinner tonight that could be in either place. But we are supposed to get rain later so it may not happen.

Today I am meeting a new friend for coffee. I found out online that there is a woman who lives literally around the corner - probably within 100 yards (unless she is at the far end of the block from me) who also has breast cancer (what is there a neighborhood cluster? No, I don't think so) and we are meeting for coffee this morning. Also today I have to do work - because I procrastinated last week and have two deadlines tomorrow. I need to do work on a lovely summer day. The one downside to working from home are the distractions. But I can work in my PJs if I want.

Saturday, August 8, 2009

I have figured it out

A friend of mine sent me an email yesterday because she heard about my air cast. Her theory is that I am single handedly trying to keep the medical industry afloat. I don't think I am doing it alone but clearly I am making vast contributions. To get an idea of how much cancer treatment costs, see this video of Ethan Zohn from Survivor fame on his chemo bills.

There is a very valid point here about people who are uninsured or not insured to the level that they thought. I find it appalling that someone who is insured is paying $23,000 for two chemo payments as their co-pay. This is why the system need to change.

But no soap box orating this morning. Its too nice a day and we are going to paint the downstairs bathroom - which means I will paint with my air cast because someone else is not as highly skilled at painting as I - he does lots of other things well, but not painting. (My opinion - he will disagree.) Anyway, its my turn to do work. He did all the hard stuff and prepped the walls. They just need primer and paint and its a 5x8 bathroom with tile about 4' up all the way around and up to the ceiling around the tub. It should be a very quick job.

Last night we went to dinner in Boston with Walter's cousin and her husband. It was nice to see them. As we were driving home, I said 'when was the last time we had dinner in town?' The answer is a very long time. Maybe last spring once. Maybe two years before that.

Today, we also have lots of fun things to do like laundry, cleaning, etc. But first, watch this video and think if you are that coordinated. I don't think I could have do it when I was six with my own hula hoop.

Friday, August 7, 2009

Doctors appointment redux

Yesterday morning I was determined to get my follow up with orthopedics so I called the doctor who was supposed to do the referral again. On Wednesday they told me they would handle it. Yesterday they told me the referral was never put in - because it was done after 5 on Friday. I asked when they would call me and they told me I could call them, which I did. I got a nice man who said he would call me back after speaking to a doctor - and he actually did. Finally, it ended up that after I went to see my back doctor I went directly over to see the orthopedics people.

So my appointment with my back doctor was interesting. First, he said 'how are you?' I said 'here's my list of back pain issues'. I think he didn't realize I had so many areas of pain so often. So he pressed on all sorts of different places to see what hurt - lots of them did. He said I have too much muscular and nerve pain going on that he can't treat some of the joint issues until they calm down. He gave me a pain reliever, Lyrica, and said to try it for three months and then come see him again. BUT:

- Not everyone can handle Lyrica. I should try it and if it makes me dizzy or other reactions to call them and get something else.
- It should start to work in a week if not sooner and if it doesn't to call them back for something else.
- In the meantime, no lifting over 20 lbs, blah, blah, blah.

This is very frustrating for me. Wait another three months to see if they can treat some of the areas which are the worst pain. Basically I get pain from my neck down to my hips... And there are lots of areas to treat. Grrr....

So after that cheery little visit, I went over to orthopedics. I was seen by a nice physician's assistant who said that he had met me before when I had my port out when he worked in interventional radiology - scary he remembered me. (Am I memorable in a good way or in a bad way?) I don't have a sprain. I have a chip out of the bottom of my fibula. Air cast for three weeks and then come back to see an orthopedic surgeon. No activity - which means no walks, no fun, grrrr!!! And to add to the little complications:

- the anti-inflammatories I take for my back can actually slow down the healing of a fracture. I can stop taking them but then my back would be worse so I was told to keep taking them and have a slower healing time.
- my osteopenia could have contributed to this little incidence. You can't really say from only an x-ray but my fibula looked a little less dense than the other bones...
- there is no guarantee this will heal in three weeks.

I think my doctors need new script writers or something. They have to have POSITIVE things to tell me. Next week I go see the radiation oncologist again. I hope she has good things to say but we will have a discussion about bone pain because of that little cancer thing that we always have to think about but really don't want to. Also, I left one of my favorite water bottles someplace at the hospital. Triple grr!

I do think my air cast needs some decoration or something. Its gray and blah. Accessorizing is important.

Anyway, today I am off to work at one job and then the other... They are having a company picnic at the second job so I will get there by lunch time so I can join them. Then tonight we are going out to dinner with some of Walter's relatives who are visiting from Chicago. A busy day. Now I am runnning late.

Thursday, August 6, 2009

What I love about having a blog

I originally started my blog when diagnosed so that I could keep my friends and family updated with what was going on with me without having to go through it over and over again on the phone or in email. Now I have moved on from cancer to more exciting ailments - gall bladder, back, and now my ankle - but still with a sprinkling of cancer to keep it interesting. That's because cancer never really goes away - you just get to pretend it did. But I still like blogging for the following reasons:

- it allows me to babble inanely and bore people I know and total strangers to tears with the excruciating minutiae of my life.

- its all about me.

- I have made lots of friends through it.

- it provides me a quick reference to what I really thought about something or when I actually had some test/procedure because my chemo brain allows me to forget everything. (This is actually very useful. I go and search my blog for the dates of what I had done and when and if it worked or hurt or whatever.)

- I get to have lovely knowledgeable people leave comments about their latest scam on my blog. Yesterday some rocket scientist offered me a deal to buy $190 of his stuff (from a website called and I will get the cure for cancer, diabetes, etc. blah, blah, blah. When will these people learn that we do not believe everything that is on the internet?

Actually I do like blogging. Would I have started blogging if I wasn't diagnosed? Maybe, maybe not. My health issues provide me with new content regularly which is important. Nothing worse than a blog that isn't updated.

So yesterday the oil tank was installed without a big mess or anything. We now have a tank that is a lovely shade of industrial gray in the corner of the basement. It should be good for another 50 years. And if we are around in 50 years we will have gotten our money's worth.

I worked at home most of the day yesterday and feel very productive. I also called the doctors office to ask about the referral to orthopedics for my ankle. Lo, and behold, I was told (their words) 'the ball was dropped on this and the referral was never put in'. Well that happens but my ankle hurts. So today I will call again and see about getting in to get it checked out. By the end of the day its a toss up to decide which body part hurts the most.

You may call me a moron because I rushed to go to my manicure at 5pm. I walked in and she said 'you're early'. I said 'what?' My appointment was at 6... grrr... But she fit me in at 530 so I only had to wait a little bit. Then I met some friends for dinner. Today I am off to work and then to the back doctor - with my list of what hurts when. I will also call the other doctor about my ankle.

Other news is that my garden is finally kicking into gear. Lots of peppers coming. Tons of tomatoes. And my dahlias and roses are both blooming, along with a lot of other things. And the cat is returning to more normal state every day - he now comes up stairs in the morning to tell us about his empty food dish. Which is fine but he doesn't have to stand on me with his 16 lbs feet!

Wednesday, August 5, 2009

Quick! Don't blink!

I had another good day yesterday. Can it be my little cloud is far away?? But don't let me jinx myself. I am just happy I now have a doctor appointment with the back pain doctor tomorrow afternoon at 1pm. I just have to make a list of what hurts (hips, sacroliac, spine, upper back) when (all the time - standing, sitting, walking, or lying down) so that I can get more information about what next.

However I still have not yet heard from the orthopedic department to schedule my ankle appointment. I will call them today to find out when. It was actually being good yesterday and not hurting until I went to the farmer's market and got one little bag of vegetables. Then I came home and got my husband to go to the grocery store together - so he could carry everything and push the cart. By the time I got home from that, my ankle really hurt. And my back. So Walter cooked part of dinner while I had an interlude on the couch with two ice packs - there is a nice convenient stretch of hot weather to coincide with the icing efforts.

Everything seems to be going well. Work is keeping me very busy. I am working from home today because the oil tank is being installed. My one request for the workers is to not allow the cat to just stroll out the basement door. We have moved his litter box to the side porch and have closed his little door so he can't get down to the basement but he doesn't adapt well to change. He will just have to deal with it today.

Tuesday, August 4, 2009

Could it be???

Could it be the little black cloud of doom is finally leaving??? I had a decent day yesterday and good things happened! My evil nasty deadline is finally over and I was given a special gift for my hard word (and there I thought I was being an evil bitch). I was given a nice and completely unexpected honor in an online community. My ankle was not as painful. I had a big meeting and will have lots of work to do as a result (which means more money).

Today I have to go off to work for 7.5 hours! How can that be? Me work a full day? I haven't done that in I can't remember how long. I work part time jobs. But I owe one job 15 hours each week which I usually do in three five hour days. But because I will work from home on Wednesday, I will work all day today and Thursday to make sure I get my hours in. But if I get through this, perhaps I will just work two days a week up there and have time here for other things. Hmmm. I'll have to think about this.

I still haven't heard from the orthopedics doctor's office but I'll give them until tomorrow to call. Just because the other doctor said they would get me in this week, doesn't mean it will really happen. And I have to call the back doctor to see about getting in there as well.

An interesting twist in my life is that my skin rash from last week came back. Can it be I am allergic to MONDAYS? Last week, we took a long weekend so I didn't have the rash until Tuesday. But that gives me new thoughts. Perhaps I am allergic to something I do over the weekend - like cover my body in sunscreen? I also have an old tube I keep using but keep saying I should probably get rid of. My next thought is to try a new sunscreen and see what happens with the rash. That would be much simpler than being allergic to a medication.

But no more procrastinating on line. I need to get my act together to get to work on time.

Monday, August 3, 2009

A wonderful weekend

A year ago I went to a Casting For Recovery retreat ( - a weekend of fly fishing for women with breast cancer - and had the most amazing time. It was a turning point in my healing process. This year I was lucky enough to go back as a volunteer. I did not fish and was hobbling around on my ankle. However, after some rain on Friday afternoon the weather cooperated and it was most enjoyable.

Back in May or so, the organization sent an email to previous attendees I assume (not just me) saying they were short a few people and could I refer anyone to help fill the spaces. I emailed a bunch of people and posted on a message board. Five women that I know applied and attended. A sixth friend was on the waiting list and another friend went to a retreat in another state. The best part of the weekend was seeing the people that I know relax and enjoy themselves, smiling ear to ear all day long. I hope the weekend was as beneficial to them as it was to me last year. I hope to be able to attend next year as well as a volunteer. Its all about being able to help others.

Now back to reality with a sunburned nose, a purple swollen ankle, and a 10 am meeting while waiting for the doctor to call with an appointment for my ankle. And to try to get an appointment with my pain doctor. Somethings never change.

Sunday, August 2, 2009

Changed plans

Well evidently I am not ready to graduate yet to walking AND chewing gum because while walking on Friday morning, I tried to look at the spillway on the reservoir while in motion and stepped in to a rut and did a BAD thing to my ankle. I was very mature and called my husband for a ride home.

Then I iced it, went to work, iced it some more, and decided this isn't a little bitty thing so I went to the doctor and had it xrayed. The verdict from the doctor: 'We think its a sprain and are treating it as a sprain. But the radiologist read the x-ray that there is a suspicious area at the end of the fibula and needs to be followed up in orthopedics.' OH JOY! ANOTHER TRIP TO THE DOCTOR! At least its not cancer... But I don't want to go to the doctor. Two days later, it is a lovely shade of purple and swollen even though I have iced it a lot. I will have to coordinate my outfits this week to match the purple....

This meant instead of arriving at my weekend away by 11 am to sit on the beach with a trashy novel, I arrived at 330. But I still had a wonderful time. And the crappy car didn't break down - I can't drive the reliable car because it is a standard transmission. More on my weekend away later.

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...