On Not Blogging About Breast Cancer

So yes my blog is called Caroline's Breast Cancer Blog but I haven't been writing about breast cancer as much. Why? Because of several reasons:

• My health is not focused on breast cancer
• I try not to live in the 'all cancer all the time channel'

Honestly, my health sucks but its not all about cancer. I have plenty of other chronic ailments to cope with. And I also try not to focus on my health all the time. I have other things going in my life - weaving, knitting, travel, gardening, reading.... I can't remember anything else. Oh, cooking. I like to cook.

I wish I could cut all the focus in my life off my health. There was a time in my life when I just had one little niggling constant glimmer in my mind of thyroid cancer and nothing else. Those were the days.

A Cold and Rainy Day For Me To Take Advantage

I am sitting here in a warm sweater with my feet up watching reruns on the DVR while it is cold and rainy outside. The cats went out because they insisted (I said they should stay in but they didn't listen - of course). When the electrician showed up around 845 AM, they came in soaking wet and snow are napping where its warm and dry.

Now that I am not working, I do appreciate having the opportunity to stay home on bad weather days. The whole point of stopping work was to be able to take better care of myself. And cold rainy days are perfect for sitting around with my feet up.

But if you want to think I am that lazy, I am not. I have the second of five loads of laundry in the wash with the first one drying. I have also picked up the house in preparation for the cleaning lady's arrival tomorrow morning.

My health is more important to me than almost anything. (Everyone should keep their health front and center take care of themselves.) Is there anything I could have done to prevent the collapse of my health? No I don't think so (except for my bad knees which I managed to do in through skiing, ice skating, hiking, snow shoeing, and more). These days my goals include not doing anything that might make my heath worse - short or long term. It doesn't seem to take much.

Last summer I went to water the plants in the back yard with the hose. And managed to completely tear my ACL in my left knee - something that won't be fixed short of a knee replacement. Some caution is the word (especially when my husband is looking except when I want him to take over for me).

I do want to get to the library later to pick up and return books. I also want to stop by the paint store to get paint samples to try out. Eventually I will paint more rooms but I am still confirming what colors I want. I want to try painting the samples on the wall and see how they look. (I will paint them on the wall where a picture is hanging and then I will rehang the pictures until I am ready to paint.)

I am taking after their example and will stay inside until I break down and go to the library and paint store. In the meantime I think its time for a cup of tea.

3000th blog post

My blog post is not about numbers or volume or anything like that but recently I realized I was nearing 3000 blog posts. Today is number 3000. My blog started June 2, 2007, 3089 days or 8 years, 5 months, 14 days ago.

I set out blogging as a way to vent my feelings and keep my friends and family updated through breast cancer diagnosis and treatment, which would be a year or so and then I would return to my 'new normal'.

It didn't work out that way. Not many of my local friends or family read my blog. I am still working on that 'new normal' (and if anyone ever finds it, please let me know where it is), and my health still sucks, even though there have been no new cancer misadventures.

I still benefit from my nearly daily blogging. It allows me a way vent my feelings on my sub-par health which is really what I need. I also like to think my so called 'words of wisdom' have helped others deal with breast cancer and other not so fun medical crap.

Along the way I have also met many wonderful people online who are dealing with their own medical crap and they have become friends, although we have not nor do I think we ever will meet in person. But we are friends. And as a result I have a bunch of greatly appreciated supporters when I go through my own bumps in the health roller coaster.

I think I will keep blogging, I see no reason to stop as long as it continues to help me.

No I don't care

Sunday is my cancerversary. I don't really care. At all. What would I be celebrating? Still being here after breast cancer. Not really. I probably should celebrate my 34th cancerversary from thyroid cancer. But I don't either. I have considered that one but never have done much.

I can understand why some people want to celebrate being around after their lives were turned upside down. I have a friend who is I believe 8 years out from stage IIIC lymphoma. I have another friend who will be 34 or so years out from stage IV ovarian cancer. Those probably deserve more celebrating but I am not even sure either of them do.

What I do prefer is to celebrate my 37th birthday (again - I was 29 for a long time but have since switched to 37) this year. My life is not defined by my health but by me. In fact, I cannot let my life be defined by my health. I am so much more than that.

When do we start feeling old?

Cancer diagnoses have never made me feel old but lots of other things do.

• Having clothing longer than my co-workers have lived
• Being older than my bosses
• Being older than my doctors by a decade or so
• Referring to young people as the younger generation when discussing clothing styles and tattoo preferences.
• Remembering the good old days when you could get bleacher tickets to the Red Sox to sit on benches for just a couple of bucks.
• Remembering black and white TV with three channels, five ice cream cones for a dollar, movies for a dollar.
• Remembering when computers were for dorks and geeks.

Being told I am too young to have all these ailments does not make me feel old. It makes me appreciate being so young.

Happy New Year!

So it was a late start for the year as its 330pm and I'm just blogging now. Its New Year's Day and I don't have much for new resolutions this year. I'll just repeat prior year's:

Younger
Thinner
Taller

Especially thinner. I have a new medication that is supposed to kill my appetite.No signs of that yet but I am always the optimist.

My cat doesn't understand me.

Many people may say 'my spouse doesn't understand me' or 'my family doesn't understand me'. I am an exception - well I always was a rule breaker so I'll always be the exception, never mind all my health crap.

First I need to state the cat was in no way harmed by the writing of this post. I was pestered to nearly to death from my point of view. The vet just said his blood work is very good and he should be good for another 19 years. Yes, 19 years. My husband does understand me pretty darn well (sometimes its scary). Its just the cat.

You say, train the cat. Have you ever tried to train a cat? They are above that. Have you ever tried to train a deaf cat? A deaf, mostly blind cat? A deaf, mostly blind, cat who is 19 and can't smell either? Its not possible.

There are two human beings who live in this house. The other human, my husband, owned the cat before I cam along and he proved he is capable of feeding the cat. Now, the cat insists I be the one to feed him. If I want to sleep in, the cat wants breakfast around 7am - I should feel privileged - in his younger years the preferred dining time was 5 am.

Once my husband heads downstairs, he waits about thirty seconds before he tries to figure out if I am awake. He will come over and look at my face. He will walk across me. He will settle down on top of me.When the cat wants, he sleeps for hours on end. When he wants something he has no problem waking me up.

The problem is my cat doesn't understand me. Here are the issues.

I need sleep in my life. Uninterrupted sleep. Uninterrupted sleep without being poked, prodded, or walked on by the delicate 15 lb pointy paws of the cat.

I have multiple ailments which cause things like fatigue, insomnia, and require sleep for healthy healing. He disagrees. I am supposed to live my life the way he wants.

Right now he is standing on my right shoulder with his front paws and his back paws on the pillows behind me. This is slightly better than when he stands on my left shoulder which has more pain issues. I can stand this for a few minutes before I shove him off.

He likes to sleep on my knees which I keep elevated by a pillow so my back is more relaxed when I sleep so I have less pain. He squishes my knees down making my knees compress and makes my back hurt. So I wake up in pain. Without enough sleep. That makes me cranky.

He just doesn't understand me and will continue to stand on my shoulder until I get up and go feed him.

A lame blog post

Yes, this is a lame blog post. Sometimes I wonder why people read my blog. I mean sometimes its really about nothing - just like a Seinfeld episode.

I have a cold still/again. I did make it to work yesterday and stayed until 300pm. I will admit that it was the day of our holiday party which makes it one of the best work days of the year. I wanted to stay until 330pm but at 300 I started to feel awful so I headed home with the intent of going to bed immediately.

My commute is usually about 30 minutes. It took over an hour because of holiday mall traffic and some unknown gremlins who slowed down the highway. But then I did finally get in bed and slept for about 2.5 hours. My husband came home and made dinner from left overs. I could taste the food when I covered it in hot sauce. Then I went back to bed.

Today I am going to work even though I am sick because (I promise not breathe on my coworkers):

1. The garage next to work is going to finish the last car repairs which have dragged on for weeks.
2. I brought some scarves to work yesterday and some of my coworkers bought them but two wanted to think about it and look at their wardrobes before purchasing.
3. I really have some work that needs to be done which is the reason we all go to work in the first place.

Then I will come home and take a nap unless a miracle cure happens between now and then. I am supposed to celebrate with a friend this afternoon - she has champagne and I have pate, cornichons, and french bread - but I am too sick for festivities and will have to cancel. Damn.

My other big concerns because getting healthy, honestly I mean getting over my cold, I am not sure about the being healthy part ever again are:

1. Find my missing mitten
2. Purchase groceries for Christmas dinner
3. Find my missing mitten.
4. Get healthy
5. Find a cure for cancer.

See, this was a really lame blog post and you get extra points for actually reading it to the end.

Patient's skills

This is one of those weeks where family members are the ones requiring medical care and I am the one providing the care. Well, I do a lot of driving. I do not provide medical care. I provide access to medical care. I have found I know lots about the hospital and dealing with hospitaization.

• I know the best way to get to the hospital to avoid any traffic. Other family members may disagree but I never sit and wait.
• I know how to work the TV/computer in the patient rooms without help. I even know how to deal with the separate key board.
• I know when and where to find the nurse to get the real story.
• I know to prompt the patient to ask for meds or to speak up about issues.
• I know where to park for ER visits and where to find wheel chairs.

One family member referred to me as the frequent flyer of hospitalizations. (I may disagree on the actual number but I have been there far too much.)

Its been a long and stressful week or so. I am not the sick one for once but I am the very tired one. I have been getting home from the hospital way too late at night. Last night I arrived home to find in the mail:

• A hospital bill
• A hospital appointment list
• An explanation of benefits from the insurance company

I was too tired to care.

Today I will go to work for the morning and have my leftover Chinese food for lunch. Then I may stop by the hospital again but what I really want to do is to come home and take a nap.

I have decided you have to be healthy and rested to be a caregiver.

An update on me

Its a blog about me so every so often I write about me. So if you are expecting something profound about the state of the world or cancer research, you can stop reading now.

I had a fun summer with lots of vacation time. In fact my job finds amusement in how much time off I have been taking. It has been enjoyable but exhausting. I am now at the point of recovering from fun.

I took a six week doctor appointment hiatus and now am back to the grind. I had four this week. I saw the dermatologist who trimmed a thingy on my face that didn't look suspect but had bled this summer for a while. She burned a wart (icky poo) on my toe which left me with a giant blood blister (triple icky poo) on my toe so I couldn't wear shoes.

I saw my periodontist and my teeth are fine but I need to floss more - now there is a surprise.

I saw my rheumatologist and there is some progression in RA in my feet. She prescribed using metatarsal pads in my shoes (which is hard when you are reduced to sandals because of the triple icky blood blister). She also gave me an NSAID cream for the inflammation in my feet to use twice a day.

Because it is me, guess how had a reaction to lotion on my feet? (Only I would have a reaction to something like that because I am special.) I started using it Tuesday night. Then I started not getting enough sleep. Last night I put it on my feeet and was trying to get to sleep when I realized by heart was racing, my body felt all antsy. On the advice of my husband (sometimes I listen to him to make him think I always listen to him), I took a shower and scrubbed my feet and got back in bed.

I slept for 12 hours after that. My husband says he will remind me of that all day - personally I think he is jealous that I got so much sleep and he probably woke up at 6 like he always does. But I feel much better today and think I will skip that cream until Monday when I can call my doctor.

My blood work had some issues that are under advisement at this time - this means wait and see and take more blood in a couple of months. No tumor markers or anything but other things which could indicate things. This means I am ignoring them until I learn more after the next rounds of test results.

I am also busy getting ready for some craft fairs with my knitting this fall. The cat turns 19 - he may need a birthday party. My husband is one of those many furloughed government workers so we are not spending money on anything. We did want to go to the beach today with our parking pass but I overslept.

My garden is winding down but my dahlias is still blooming. That is not a dahlia in the picture but another flower that was blooming last week.

See it was a blog post about me but I am fine mostly and tomorrow I'll try to be more profound.

On being cynical or jaded...

Yesterday I thought my blog post was a bit cynical. Someone on Facebook said it was a bit jaded maybe but understandable.

My health keeps giving me hits - if its not one thing, its another. I spend more time rearranging my life for doctor appointments and at those appointments than anything else. By the end of this week, I will have had 18 medical appointments in the first 19 weeks of the year. I am down to an expected rate of about 50 doctor appointments for the year. This is the lowest since 2006.

My therapist (of course I need a therapist with all these medical issues) tells me I am in chronic mourning for my health because something else always seems to want to cause problems. (Yesterday my knee started popping when I walked up and down stairs but I am going to ignore that one for at least a month.)

I don't think I deserve any special treatment because of my ailments. I do struggle with writing a blog about breast cancer when its not really much about breast cancer right now. But I do have my annual mammogram along with some other 'fun' tests this week (which I am ignoring for now because that is all my inner child can handle). I'll fill you in on the details sometime in the future.

My cynicism on my health comes out as I am as healthy as a horse on the way to the glue factory. I work with a bunch of people who have no idea of any health ailments that I have had longer than the four years I have worked there. But they still think I am the least healthy employee.

I just got an email from RealAge.com telling me I should think myself young. Yeah right.

I do have a healthy body part

Yesterday was a relatively normal day in my life. I went to Costco, went for a walk, and then got my nails done. Aren't I exciting?

Later at the salon they had a special client appreciation event where they did hair treatments, make up, had a pop up store for consignment clothes, food, awesome fruit punch (with a bottle of Absolut on the side but I did not partake).

While I was getting my nails done, they were setting up the popup store - note to the woman in a blue dress: while your dress may be vintage and pretty, it was not appropriate for setting up racks (we did see your underwear THREE TIMES) and I believe it (the dress  not the underwear) was on backwards. It was loud and ended up being fun.

Then I got my make up done. I will probably go back and buy some of it because it stayed on, was not uncomfortable, and made me look better. Or maybe I should just start wearing the make up I already own.

But then I got to the good part where they found a healthy body part. My last visit was to get a conditioning hair treatment. One woman was designated as the technician who would do the treatment but another woman figured out which level of treatment my hair needed. Both of them said 'oh her hair is wonderful, its so healthy', I was over joyed as it means I have a healthy body part. Then another woman had to feel my hair and another. They all thought I had the healthiest hair and talked about it as if I wasn't there.

The woman featuring the hair product line they were promoting, thought my hair was so wonderful as well it barely needed any treatment.

I was happy. I left with my nails done. I was wearing natural make up so I looked good. And I had the softest, healthiest hair in town. So I have a healthy body part.

If you don't have your health, what have you got?

Some of us look at the rich and famous, the Hollywood stars, and others and think they have it all. Beauty, riches, and fame seem to be everything.

But they are wrong. If you don't have your health, what do you have? Sofia Vergara had thyroid cancer 12 years ago. A recent article about her provides her reactions to thyroid cancer diagnosis and treatment.

"She said that you realize that no matter how much beauty, money, and success you have, if you don't have health, you have nothing, because you can't do anything."

Personally I think I am as healthy as a horse on the way to the glue factory.

It only took Sofia 12 years from her cancer diagnosis to be able to sum this up in one sentence and she may have gotten there sooner. I am a little slow. It probably took me a long longer to be able to react to a cancer diagnosis in the same way.

But if you think about it, one of our fundamental reactions to a cancer diagnosis, I think, is that we have lost our health because we are now told we have a potentially terminal ailment. So what else do we have? That is where we need to figure out so we can adapt and get back to living.

We need to make a switch

I think we, as in my husband and I, should officially switch to the Mediterranean diet. There is more research (because the researchers need to keep busy) showing the benefits of it.

Good things in the Mediterranean diet are olive oil, tree nuts and peanuts, fresh fruits, vegetables, fatty fish and seafood, legumes, white meat, and wine with meals. This to avoid are soda, commercial bakery goods, sweets and pastries, spread fats, and red and processed meats.

Therein lies the problem. My husband is Mr. Steak and Potatoes.He would happily eat beef every night. I will have to work on this. And the other problem is I'm supposed to avoid alcohol due to my medications. So I wonder does it work if you don't drink?

Anyway, we should be healthier. I hope. And deflabbed. (That's my word for it.) Well its better than the grapefruit diet.

I am being daring

Today I will be daring. On several fronts.

Back when I was in chemo a friend of mine told me to stop whining and get a hobby. I took up crocheting and then knitting.  Well back when I was in 4H and girl scouts I learned to crochet, knit, embroider, needlepoint and a few more girly-suitable-to-the-1960's (am I really that old?) skills. I hadn't thought of them in decades. When my sister in law was pregnant with my first nephew, I got inspired to crochet a baby blanket and took a stab at crocheting with her help and bought yarn and materials. Suffice to say he is 14 and the baby blanket now resides in a closet somewhere about 2" wide.

During chemo, I thought it might be time to finish the damn baby blanket. At that point my nephew was 9 and I knew he would no longer appreciate a baby blanket but he did have younger siblings. I promptly gave up on that blanket and started crocheting like mad. I started making scarves for family members. My addiction grew to encompass knitting - it was creative and non-fattening. The following year all my friends got scarves as well.

Since then, I have been making a stock pick to end all stock piles. I have a yarn stash that puts me clearly in as a member of SABLE (Stash Acquired Beyond Life Expectancy) even without cancer twice life expectancy. I have developed an addiction to yarn. I have a giant bag of yarn - you know those giant bags for storing comforters... Its almost full.

Now I have to go on the offense and get rid of my scarves so I can buy more yarn to fuel my addiction. I contemplated selling them in a local store on consignment but that didn't work out. I also thought about selling online at Etsy and that would have been a lot of work. Those would have been the easy way out. I wouldn't need to face down customers critiquing my products. I mean what if they don't like them? And say it to my face? "Gee her work is really not very good". Could I handle that? I'm not sure. I could also play the cancer card - I took up knitting and crocheting during chemo after my second cancer diagnosis so don't buy them for the quality but buy them out of pity.

So I was brave and daring on two counts and signed up for a local craft fair at a nearby school. My two counts of daring are: can I face my customers - I mean they could tell me my stuff sucks or is overpriced and not buy it. Ever. And can my body withstand a five hour craft fair? I will be  manning a booth by myself for the duration. I am equipped with a chair, a water bottle, a little bag of oranges (after a good healthy breakfast), some pain pills, and my cell phone to call my husband if I need to be bailed out.

I prefer to keep to the background but this will certainly put me out in public. So I will suck it up, put on my big girl panties, and face the music.

PS Please come to the Peirce School today by 2pm....

Taking charge of my health

I have fallen into a rut of bad behaviors:

• I am eating too much leftover Halloween candy. This is a new 'bad' thing. We never have candy in  our house so we are taking advantage of it. We did not get the trick or treaters we thought we would  and have had candy in the house. I think I need to hide it from us until my brother comes to visit with his wife and four children over Thanksgiving. I can safely say there will not be any candy left by the time they leave.
• We need to eat more fruit and vegetables. This is not to say we do not eat fruit and vegetables. We both have a piece of fruit with breakfast and another as a snack during the day.  We also have a vegetable with dinner every night. But some how we have gotten out of the habit of eating a salad as a first course every night. I have to fix that. 
• I need to lose 20 lb. - see the two items above. Decrease candy + increase salad = weight loss.
• New ailments and on going old ailments make me feel crappy and in pain more and more. I need a lot less of that.

I have to focus on my long term health. After discovering I was allergic to my first two RA drugs, my rheumatologist said something to me and I said 'I am focused on my long term health." It has to be my goal. I go to the gym three times a week and do as much of my work out as I can - some days about half, some days more.

With my medical history, I have to be more proactive than the average person. I have to increase my fruit and veggie intake. I got my flu shot. I do get exercise. I need to be in charge of my health again. I have been lazy.

Is it time to rename my blog?

When I first started my blog it was called 'Caroline's Cancer Blog' for a very brief period. Then I settled down with 'Caroline's Breast Cancer Blog' because it was about coping with breast cancer. Now more than five years later, my breast cancer seems to be cooperating and not stressing me out (as much) as it did before.

But now I have all sorts of other medical stressors:

• Thyroid cancer mysteries. What the hell is going on in my neck? We keep repeating ultrasounds and get conflicting reports - bigger, smaller, same size.
• Back pain. Degenerating disks to start with and living on pain meds. 
• Fibromyalgia. This isn't fun. I need to go back to my back pain doctor.

And there's more that I can't think of right now because I have chemo brain (or maybe its fibro fog). I'm tired, in pain, and a touch cranky at times. Also:

• The spell check on my computer includes oncologist, endocrinologist, rheumatologist, and multiple medications. 
• I have a special directory on my cell phone of all my doctor's contact information and have their secretaries' names memorized.
• I see my oncologists less than I see some of my other doctors.
• I feel like I know the pharmacists at the local Walgreen's. 
• The nurses in the interventional pain center where they do injections recognize me.
• I can't fit all my prescriptions on my bedside table and keep them on the shelf in my closet.
• My primary care doctor is happy when she doesn't see me more than every few months.

So my life isn't just about breast cancer any more and my blog isn't just about breast cancer either. I have lots of opinions on lots of things. But I'm not sure I want to rename my blog because breast cancer was one of the first big things that have happened to me in the last few years. It still exists in my life - a cancer diagnosis never really 'slips your mind'. With two cancer diagnoses, when I don't stress about my other health issues I can always stress about them.

Aging

I often look around and see people my age and think 'they look old'. I mean if I run into someone I went to high school with and they have gray hair and wrinkles, I think they look old. I hope I don't look that old, ever.

Yesterday at work, they had a monthly sales meeting where they get a birthday cake to acknowledge the birthdays of all employees that month. It is actually a good system. My birthday and one other person's were celebrated. Then people started asking me how old I was. Most of them are all older than me and I have worked with them for a few years now so I don't really have a problem with this. But apparently they have a problem, because I am between 5 and 10 years older than they thought. So then I looked at my Real Age test results which says I am 3.7 years younger than my actual age. I combined the two and now I am 37 if you need to know.  Next year I will be 37 again.

I am 37 with the medical records of an octogenarian.

But I don't look sick

When people see me who don't know my health disasters, they probably don't think I have anything wrong with me. Well that just goes back to the fact that appearances can be deceiving. Have you ever hunted through a parking lot for a single space and then seen a seemingly healthy person park in a handicapped spot in the front row and stroll into the store while you drive in circles? They may have a respiratory problem which prevents them from walking long distances or some other ailment that does not have visual symptoms.

Us cancer people may be harboring some nasty things inside but usually don't look too bad - unless we are sporting our chemo 'hair cut' and pallor. At our first diagnosis, while we are waiting for surgery, treatment, and full staging, we may look as healthy as can be even if we contain multiple tumors.

Now I go to a gym where its full of healthy looking, dilapidated people. I was speaking with one of the owners recently and he said everyone there has significant health problems. But most of them, unless they are on oxygen, a walker, wheelchair, missing a limb, or other obvious ailment, look pretty darn healthy because they work out. Recently I went  hiking and was pleasantly surprised at how well I did on a very hot day. It shows my regular work outs are helping me significantly.

But if I compare myself to most of my friends and colleagues, I have more health issues alone than they all do combined. But at least I don't look sick.

I am undecided

I am undecided today. While I wish there was a cure for cancer (wouldn't that be nice?) I also wish there was a cure for the common cold. I am in day 5 of an evil cold. I have been doing all the right things. I first felt bad on Wednesday and was in my pajamas at 5pm,  in bed by 7, with the light out by 8. Thursday I stayed up slightly later. Friday even a little later. Yesterday I decided to pretend I was healthy and made it through 30 minutes at the gym and a trip to Costco. Today I woke up at 130am all congested, and no I did not get back to sleep. (I may slip into crabby mode a little later as a result.) In December I had another evil cold for 16 days that interfered with all my holiday preparations. I am getting a little fed up with this health business interfering with my desires to have a normal life.

Why can't there be a cure for both the common cold and cancer?? That would be the perfect world. Actually there are many medical ailments out there that could use a cure. And, no, there is not an evil conspiracy by the government, aliens, giant corporations or anyone else to make money off the rest of us while hiding the true cures for all ailments. Nor will you be healed by clicking on a link or sending $100 to some 'dude' somewhere  who has discovered the cure for whatever ails you - and you know this because he sent you an email where your name was only slightly misspelled.

Maybe what we all need to tide us over until the cures are found is a reverse voodoo doll where we can stick pins in it and relieve our symptoms. I don't know I'm clutching at straws here or having a pipe dream or whatever, but frankly I am sick of being the patient patient who goes from doctor appointment to doctor appointment. I am really just sick of being sick.