The Honest Truth

I have to admit this, especially since I am such a healthy patient. Its a constant issue for me.

I hate needles. I can't watch TV about the flu or another disease when they show people get injections.

Going for blood work is a bad day for me. And the last time I went I left behind yet another water bottle. Every Wednesday my husband gives me my methotrexate injection for my rheumatoid. I hate that part. I would never be able to give myself a shot.

Then today I had to take the cats to the vet and both of them got shots, and I was in the same room. They had my deepest sympathy on their discomfort from the shots - mental and physical anguish.

But now we can all take a deep breath and get on with our day. Until my next shot next week. Yuck.

Listen up: No more ailments!

There I am minding my own business, at the gym, working out. I finished my cardio and went back to the locker room to put away my tablet before weights and stretching. And my right knee started hurting. This is not allowed.

My right knee has not given me problems since knee surgery (after a skiing 'incident') in 2001. It is currently known as my 'good knee' therefore it is not allowed to give me any problems or cause any pains or any other issues.

I have too many other body parts with 'issues' so my right knee is not allowed to misbehave. I will be good to it for a few days but then it needs to get its act together and behave.

Okay, 'nuff said.

So How's Your Self Esteem?

A cancer diagnosis takes a lot out of you emotionally, as well as physically. You feel like you look like crap during treatment. First comes that stressed/shocked look of someone just hit with the word 'cancer' that has crept slammed into their life. Then comes the chemo pallor which wipes out all color in your skin. This is heightened by the nausea and and the face of someone trying to keep food in your stomach. You may not be eating much but you get fat from the steroids. Finally, your hair, followed by eye lashes and eye brows all disappear.

You do not want to look at yourself in the mirror so you can see the fat, pale, nauseous, bald version of you. Is this your new normal? You really hope not. But your self esteem has taken a nose dive in terms of how you look.

You work hard to get some color back, get some energy back, and lose some weight. The weight loss is harder than before because you are older now and your body is not quite what it was before chemo. And you cross your fingers your hair will return and look something like it did before.

Finally, you begin to somewhat resemble your former self. But how is your self esteem? Can you erase your cancer image from your mind? I think this is the hardest part of the 'new normal' for many patients. The memories of your younger healthier self from your pre-cancer days lurks in your mind reminding you of what you used to be like. Before cancer.

I know several people who drastically changed their looks after cancer. They stopped coloring their hair or they never went back to a long hair style. I know I used to have long hair before cancer and had been considering cutting it off. I never went back to long hair. I also spend a lot more care on my nails than I used to.

There are no pictures of me during treatment because I wouldn't look at myself in the mirror much less allow my image to be captured. My self esteem took a huge hit during treatment. I'm not sure if it will ever come back. But I am working on it. I never had that much self assurance before cancer #2. However I have decided I need to work on that. Losing some weight will help as will therapy. Being perpetually unhealthy on a medical roller coaster doesn't help either.

Organized Vs. Scatterbrained

I do not consider myself scatterbrained. (My husband would disagree and has several other adjectives to describe my lack of organization at times.) I do blame fibro fog, chemo brain and whatever else I can remember to call it.

I used to be fairly organized... Well sort of organized. Organized but dependent on my lists to keep me organized. Now I cant remember anything long enough to write things down so I can take care of them. I'm retired so who needs lists? Or so I thought.

So I have resorted to lists again. I will go back to my work habits and keep a running list of everything I need to do so things will get done. I have at least ten items on my little list that I already started. Everything from making appointments for the cats at the vet to calling Verizon (I hate dealing with big companies' phone trees so I have been procrastinating on this one).

Our house looks like a tornado went through it as well because my fibro fog/chemo brain allows me to overlook the chaos that surrounds me. I have never been a neat freak but my organization has sometimes been lacking. Or I just got tired and needed to take a nap and slept through my cleaning time.

But now I will get my list going before I need a nap.

That Little Voice In The Back Of Your Brain

Okay I admit it. But that little voice in the back of my brain still manages to spring to the head of the line and keep me awake at night. No there is nothing new wrong with me. I'm fine. But that stupid little voice reacts to every little tweak or twinge in my body and tries to get my attention.

I wish I knew a way to kick that little voice to the curb.... Any ideas?

I'm Not Unhealthy Enough

As I expected the Social Security Administration does not think I am unhealthy enough to receive disability benefits. I did not expect to be approved the first time I applied. According to them since I can walk and lift up to ten pounds I should get a job. They understand that I have degenerative disk disease, depression, rheumatoid arthritis and fibromyalgia but they are all being treated to a level where I should be able to work.

What they missed is that all of these ailments are treatable but they missed the one that isn't treatable: fatigue. Other than a good night's sleep, which helps me for a good part of the following day, there is not much else you can do for fatigue. I do exercise, which leaves me with good mobility and range of motion, so my body is physically tired to help me sleep. But I rarely sleep all night. And the good mobility and range of motion allows me to move around better than most people with my ailments.

Last night, we had house guests arriving late, I feel asleep on the couch at about 9 until they arrived around 1030. Then after everyone settled down I went to bed and it took me at least an hour to get to sleep. I kept waking up and finally got up around 630. I know I will be tired later but I'm okay for now... until I need to lie down for a few hours this afternoon. Tomorrow I would like to sleep until 9 am but I doubt that will be possible.

Anyway, now I need to file an appeal with Social Security to see if I can eventually receive benefits. As I said, I did not expect to be approved now. I expected it to take up to two years and its only been less than three months. (Proof that the wheels of the government can move at a relatively normal pace.) Now to find a lawyer. I think I have the name of one and will start there.

A day with cats

I didn't blog yesterday. Well I did write about low self esteem after ailments but I didn't publish it. I just needed to vent. I was also really tired and busy. I had a dentist appointment in the morning and then I thought I had a 1230pm meeting but that was cancelled and my knitting group was postponed until 3pm. I arrived at 1245 for a 3pm meeting because of my inability to read an email. This meant I had a long day and was very tired.

Also, it was a day of cat vs rodent adventures. In rushing to my meeting, I went down to the car through the garage and found the cat, Boots, frantically looking behind folded cardboard boxes along the side wall. I moved the cardboard and the cat dashed and pounced on a chipmunk cowering behind it. There was an ensuing race around the garage and then out the door.

I went back upstairs and then downstairs again. Boots was outside and then proudly walked toward the garage carrying the chipmunk in his mouth, a gift for me, which he then deposited IN the garage. The chipmunk was alive and ran off again with Boots chasing. I left with the garage door closed firmly in hopes that there would be no repeats of live animals carried into the house.

After I finally returned at 5pm, exhausted from being out for so long, both cats were no where to be found. However they reappeared and were chasing yet another mouse who was hiding in the day lilies. We went to make dinner on the grill on the deck, I found a mouse nest IN THE GRILL. I needed back up.

I went and grabbed Boots, who hates to be carried, and brought him over to the grill so he could evict them for me. He ran off because he wanted to go catch his other mouse. Then I grabbed Zdpot and he climbed in the grill and tried to remove the mice. My husband intervened and the mice were evicted. The cats went back to their mouse hunting at the other end of the house.

When it was time to call them in for dinner, they were chasing yet another critter in the front yard. I intercepted them by opening a can of cat food in their ear shot and they came running in. 

Why am I blogging about our cats? It has been almost one year since we adopted our two cats. They have impacted our lives and made it warm and fuzzy. As my health has lessened, they have made things nicer for me by entertaining me, cuddling with me, chasing my yarn, and just being companions. Here are before and after shots of the two of them.

Boots before adoption	Zdpot before adoption
Boots now	Zdpot now

Boots came to us a very shy boy who was desperate for attention. He wanted to cuddle but was too concerned about being scared and abandoned. Now he sleeps next to me in bed. Zdpot, or Evil Kitty because he picks fights and steals Boots' food, was malnourished with white skin showing through thin short fur. He also had ear mites and internal parasites. He also did not know how to be a cat - he didn't meow, didn't know about toys, didn't know there was an outdoors, and had no idea how to be nice to anyone - human or feline.

Its been a nice year with our new cats. They like to take care of us and we like to take care of them.

There is a really big gap between patient needs and research advancements

At a recent conference, Dr Piccart-Gebhart asked the question of how the highly fragmented breast cancer research is meeting patient's needs. This raises a very good point.

We know there is all sorts of medical research going on right now. It covers many different areas in gene expression, tumor micro environment and more, and for each type of breast cancer that exists. But does it answer these questions, as noted in the articlets?

"Patients with advanced-stage HER2-positive breast cancer tend to want answers to the following questions:

• Can I live for many more years with the disease?
• Can I be sure that the chosen therapy will truly help me?
• Can I stay away from therapies with marked side effects for long periods of time?..."

"Patients with early HER2-positive breast cancer have a different perspective when it comes to tailoring their treatment. What they want to know is:

• Can I be sure that my long-term treatment will help me?
• Can I do as well with a simpler or a shorter treatment?
• Can I forgo aggressive chemotherapy?"

I know these questions were posed as for HER2+ patients but I think they are applicable for all early and late stage cancer patients. As a cancer patient, I hear about new research all the time but very rarely am I able to 'connect the dots' and figure out what it would really mean for me if available when I was diagnosed.

The article I mention above had an doctor and consultant to Roche-Genentech answering the questions for HER2+ patients. I am not a doctor.

Usually when I ask my doctors about a new advancement that sounds like it might work for me, I am told that yes its new but needs more research before they can be sure... Well how can I tell? I don't have the training to understand all this medical stuff. It would be nice if research was presented in a way us patients could understand and how it ties into other research and what it means for the patient. This is a really big gap. 

The Changing Focus of Cancer

For 25 years, cancer had a changing focus in my life. Sometimes it would leap back up into the front of my stress levels. The changing levels were mostly due to my health. It used to be pretty good but did have its ups and downs. But I did used to be pretty healthy with cancer staying fairly far into the back of my brain.

I was mostly on an even keel. I say 'mostly' because who can say they are continually positive all the time. After a quarter century of a cancer focus in my life when went from all encompassing to moving to the back of my brain, things changed.

Nearly nine years ago, that all changed when I was diagnosed with breast cancer. Cancer came front and center in my life. Actually it came roaring back into the front and center of my life. One thing else I did know at the time was that I had already gotten through cancer once before so I could be slightly optimistic that I could do it again. A tiny sliver of positive things.

But for the next six years probably it was still important to me and a topic of frequent blog posts. But then in 2013 when I was diagnosed with rheumatoid arthritis and fibromyalgia, cancer has slipped in importance in my life, but still lingers.... After two cancers, its never going to go away.

Now I have a split focus in my life, sort of evenly divided between:

• breast cancer
• thyroid cancer
• rheumatoid arthritis
• fibromyalgia
• all the related side effects from all the related treatments

What this means is that cancer is not completely a giant sucking black hole in my life. This is a slightly 'healthier' balance. Not that I am healthy but maybe a saner balance.

I think anyone when they are diagnosed with cancer, it takes over their life, until something changes in their life and they get distracted. So maybe I have been a bit distracted from the giant cancer focus in my life. But it will never go away. But it is allowing me a bit more of sanity. Who doesn't need sanity?

No Longer A Cancer

Just like Pluto is no longer a planet, one type of thyroid cancer is no longer a cancer.

"An international panel of pathologists and clinicians has reclassified a type of thyroid cancer to reflect that it is noninvasive and has a low risk for recurrence.

The panel renamed encapsulated follicular variant of papillary thyroid carcinoma (EFVPTC) as noninvasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP)."

So you used to have cancer but now you don't any more. This isn't a cure in any way, shape, or form. Its a bit of fancy word play if you ask me. And its a way to prevent overdiagnosis. (Isn't that smart.) Its sort of like sending a rocket to Pluto and then deciding not to after it was already on its way.

For me its a bit of a different story. Back at my thyroid cancer diagnosis, I was told I had both follicular and papillary. I don't think they had any way of diagnosing subtypes then so I have no way of knowing if the follicular thyroid cancer I had was this non-cancer type or not. This is not helpful to me at all.

"Dr Nikiforov and colleagues point out that the incidence of EFVPTC has risen two- to threefold during the past 20 to 30 years and makes up 10% to 20% of all thyroid tumors diagnosed in Europe and North America. This increased incidence has been explained by improvements in diagnosis. It has been described as an "epidemic of diagnosis" rather than a true increase in disease."

This is part of the movement to decrease over diagnosis and over treatment. Okay, I can understand the over treatment part but not the over diagnosis part.

"In 2013, a working group sanctioned by the National Cancer Institute proposed that a number of premalignant conditions, including ductal carcinoma in situ and high-grade prostatic intraepithelial neoplasia, should no longer be called "cancer."

Instead, the conditions should be labeled something more appropriate, such as indolent lesions of epithelial origin (IDLE), the working group suggested. "Use of the term 'cancer' should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated," the group said at the time."

Over diagnosis is a problem that I can agree with. However if its an ailment that requires treatment it should be treated appropriately. I also can agree if people are told what they have is not cancer, it may be significantly less stressful for the patient and their family. But if it is something that could turn in to cancer and kill you in the long run, the word cancer should not be removed from the name. And if you can't tell which it is, just assume the worst and treat accordingly.

I'm Tired

There's a news flash. I'm tired. I have been exhausted most of the week. Sometime earlier this week I managed to get overtired. My husband ended up cooking dinner the other night. My back hurt too much an I was too tired. Then I didn't get a good night's sleep for a couple nights. Last night I didn't sleep well again. I did manage to go back to sleep this morning for a few hours which made me feel better.

But my biggest problem in life (besides getting cancer a couple of times, rheumatoid, and fibromyalgia as well as a bunch of other ailments) is getting enough rest. You can treat everything else. But you cannot treat fatigue. Other than taking lots of naps.

So my goal for the next few weeks is to get plenty of rest... but I'm going to a couple of yard sales, do some gardening, and I'm sure I will find some more things to do. I'll have to plan a nap, or two, or ten!

Stand by your patient

Nothing rips apart a relationship like an icky medical diagnosis. First you have to deal with your so called 'friends' who head for the hills at the first sign of anything yucky, especially the word 'cancer'. They are not your friends. Forget about them.

Then you have friends and family who obsess about your ailment and call and email constantly for the latest worst of wisdom imparted by your medical team. They often offer their 'advice' in return saying things like 'I can't understand why your doctor hasn't given you [insert the name of the treatment given to their neighbor's dog walker's cousin's hair dresser when they had a completely different diagnosis fifteen years ago]. They also want to know every time you have the least minor issue so they can be 'informed' about how you are doing. You have no idea why they need to know so much and what they are doing with all this information but feel invaded by their constant barrage of inquiries. Again, they are not really your friend either.

The people who are your friends are the ones who stop by and visit, call and just listen, and treat you like a human being, while you are trying not to lose your lunch after your latest infusion. Hang out with these people.

Finally, you have the person closest to you: your spouse/partner/best friend. Too many people find themselves suddenly single after a cancer diagnosis, in particular. I know we had our ups and downs with my breast cancer diagnosis. But I can't tell you how many friends have spoken of their spouse's lack of support, or even departure.

My husband has been wonderful. For the last three years, he has given me my weekly injections for Rheumatoid Arthritis, because I cannot deal with the idea of giving myself a shot. He accompanied me to most of my doctor appointments after my breast cancer diagnosis, where he was allowed to see everything other than my weight and any pelvic exams. He came with me to every chemo infusion where we played scrabble during the infusions (and he would delight in winning when the drugs kicked in and I could only form two letter words). He only stopped going with me when I insisted he couldn't keep missing work for weekly infusions. Now he will go with me to any medical appointment I request him to.

Unfortunately I have friends who are forced to go to difficult appointments alone or are forced to find rides for infusions or other times when they are not in shape to drive. Their partners find excuses as to why they can't help out. Or have left them completely to cope alone with bad medical news and the accompanying job loss and reduced income.

All I can say if you have a friend or partner coping with a medical disaster, don't walk away from them. If you have problems emotionally coping with their medical problems, please do not leave but try to face your concerns and become a better you. Its you who has the problem not them.

The Dark Side of Anti-Oxidants

I read this article this morning on the dark side of anti-oxidants and was very surprised. I have heard all the benefits of anti-oxidants and why it is important to eat them as part of a healthy diet. Some medications are made with antioxidants. Many people rush out and get fresh fruit and vegetables specifically for their antioxidants and benefits.

"There is no question that antioxidants, such as those in fruits and vegetables and other foods, neutralize molecules called free radicals that can damage DNA. That has led to assertions that antioxidants can prevent cancer, since DNA damage can turn normal cells into malignant ones. But studies of whether antioxidant supplements (pills, not foods) can prevent cancer have largely disappointed."

So that last sentence tells us something. A hint that maybe anti-oxidants aren't quite as good as previously thought.

"Because free radicals might also attack cancer cells, scientists are studying whether antioxidants might allow tumors to flourish. The new research, in Science Translational Medicine, found that they can. When scientists exposed lab dishes of human cancer cells (liver, breast, colon, ovarian) to the diabetes drugs sitagliptin (sold by Merck as Januvia) and saxagliptin (AstraZeneca’s Onglyza), the cells migrated more. And when nine mice with human tumors were given either of the drugs, the cells metastasized more and invaded far-flung tissue...."

Did you read that right? Yes you did! The previously thought wonderful anti-oxidants appear to help metastasize cancer! So if you have cancer, your cancer will spread faster with help from the anti-oxidants. Nice! They are off my diet for now.

But the writers add that they did not cause cancer, just that they helped it spread. And this is a mouse test which means that it may not be the same for humans. And more research is needed.

So I am not jumping to any conclusions here. I know its only a mouse test but these results do not make me happy. 

Side Effects

You get an ailment, maybe cancer, and they come up with all these drugs, surgeries, procedures and more to 'cure' you. Eventually you start to feel better and get to that 'new normal' crap they tell you about. And then something starts to not be right with your body and you go back to the doctor and find out your oh-so-wonderful cancer treatment has left you with a side effect that might kill you on its own.

I know people who this has happened to. My sister in law's sister was treated with radiation to her chest in her teens for Hodgkin's and ended up dying of breast cancer at 47. A woman at the gym, her daughter just had a very serious heart attack at the age of 53 as a result of her treatment for Hodgkin's as well. A friend has heart damage as the result of her breast cancer chemotherapy. And I can go on.

My rheumatologist is considering switching my treatment combination for my RA but is concerned about side effects that could potentially cause life long problems for me. I also need a yearly chest x-ray, which is standard procedure for those on one of my medications, to make sure I am not causing permanent damage to my lungs.

As medications get stronger to treat more and more ailments, their potential side effects can be deadly. One of the most important parts of clinical trials is balancing the potential side effects from a specific dose, with out killing the patient.

They cure you from one disease and end up killing you from something else as a result in the long run. Does this seem right? It does not to me. I am not very happy about this. But what options do I have?

There are people who say they cured themselves through some diet change, a secret potion found on an island in the South Pacific, or becoming a raw paleo vegan or something. None of those options appeal to me. I do my best to take care of me but I also try to live my life the way I want.

I do take my Western medicine and hope the side effects will not kill me in the long run. This is the part of the system that needs to be changed.

Cancer Shield

I read an article talking about the rise and fall of Lance Armstrong. How is use of drugs and the culture behind the scenes of professional bike riding eventually fell apart. This lead to him being banned for life from bike riding.

In one part of the article, one of his former team members stated that he had a 'cancer shield' instead of being a 'cancer survivor'. I was very intrigued by the term 'cancer shield' which lead to me thinking. (Sorry, I know I should never think too much.)

So I am familiar with idea of the 'cancer card', which is from Kris Carr's Crazy Sexy Cancer.This idea allows you to get out of certain things you really do not want to do.... like lunch with your boss - you can say 'well I'm not feeling that well' and sigh. I mean god for bid you might have a relapse as a result of lunch with your boss. Or you swipe that cancer card to justify buying a funky pair of new shoes....

But if you abuse that 'cancer card', do you create a 'cancer shield'? Abusing the shield would allow you to justify bad behavior by hiding behind your cancer. Its one thing to buy those fancy shoes to celebrate ending chemo. I bought myself a fancy watch in fact. But buying a new pair of shoes every day would be irresponsible and lead to a whopping credit card bill.

Was Lance Armstrong using a cancer shield to hide his bad behavior and abuse of prohibited drugs? I'm not sure. But I can think of other bad behaviors where the badly behaved hid behind their cancer 'shield'. Just because you are still here after a cancer diagnosis, it doesn't mean rules no longer apply to you.

Family History

I do not have a family history of cancer. My father was diagnosed with lymphoma at age 85. A maternal aunt died of a blood cancer at age 78. Both my grandfather's died of cancer - one of prostate cancer and one of gall bladder cancer, in their 80s. Some of my great aunts and uncles who smoked died of cancer as well. But none were very young and they were smokers. 

The definition of family history of cancer is:

"You may have a strong family history if any of the following situations apply to you:

• More than 2 close relatives on the same side of your family have had cancer – the same side of your family means either your father’s relatives or your mother’s relatives
• The relatives have had the same type of cancer, or different cancers that can be caused by the same gene fault
• The cancers developed when the family members were young, below the age of 50
• One of your relatives has had a gene fault found by genetic tests

It is important to remember that cancer is most common in people over the age of 60 and is rarer in young people. So cancer in older people is less likely to be due to an inherited cancer gene."

Then along came me: first cancer at age 19 and second at age 45. How did that happen? Who knows. The one thing I have learned, through lots of therapy and support groups, is that I can't beat myself up about it.

(It is important to remember in life that nothing that happened can be undone, and unless you intentionally did something, do not blame yourself. You can blame your lung cancer on your chain smoking or your skin cancer on your tanning bed addiction but otherwise skip the self blame.)

But I digress. Most cancers are not from family history. Despite all the publicity about the BRCA genes, something like less than 10% of breast cancer cases are attributed to them. There is also an obscure genetic mutation called Cowden's Syndrome, which has thyroid cancer and breast cancer as symptoms. But I don't have that.

So basically I do not have a family history of cancer and some how I got the short straw. We have no idea how I ended up this (un)healthy. I don't really care how this happened and I am not going to waste any more energy on stressing about it. The unfortunate part is that I now have an increased risk of getting another cancer.

I did inherit other things from my parents. I have my father's hair - his is not yet completely gray at almost 88, and I get to gloat at my siblings and their gray hair. But I did also get my mother's rheumatoid arthritis. Damn.

I Was Only Trying To Be Normal

Yesterday I made a big mistake: I tried to be a normal person. A nice spring Saturday is the perfect day to contemplate the garden and take care of other things around the house. We started by cleaning out the garage of gardening items and moving them under the porch. I pointed, my husband picked things up and put them down. He then set up the hammock stand so I had to try it out for a bit. (Very comfortable. I will make good use of it this summer.)

I then went into the garden and cleaned out some invasive weeds (I swear the previous owners considered dandelions to be good plants). Then I pruned away at the dead branches on the bushes and the ones which were broken in the heavy snow this winter. So far so good. I probably spent an hour in the garden.

Later I set up my loom and warped it (put the longer strands of yarn on it) so I could begin weaving. I was about to start weaving when I realized that my back hurt a lot and was starting to spasm. At that point, I decided I was done for the day and my husband cooked dinner while I lay in bed.

I thought I was okay with a pain pill and went to bed. I did not sleep well (second night in a row) and my back is still pretty sore. I am waiting for my next pain pill to kick in.

But I was only trying to be normal and do normal things. And today is not going to be a good day. Too bad I have plans for lunch out and then a museum. I will start with lunch and see how well I actually do. I probably will have to nix the museum as I am not sure how I will do standing so much. Grrrr....

I just wanted to have a normal day. Is that too much to ask?

Tolerance

I haven't been feeling very tolerant recently. What I mean by tolerant is being able to put up with other people's crap. It is not my problem if some people are acting pretty stupid around me, or are rude, or are just plain dumb. I do not feel the need to put up with it. I have enough going on in my life that I can be a bit cranky when dealing with others.

As a friend was telling me recently, I need to keep my mouth shut and not tell people they are driving me crazy. I know its not my business what someone else wants to do but sometimes I can be a bit 'outspoken' (as I hear peals of laughter in my head from the people who know me best). I recognize that I do think I can come across as a bit bitchy at times. I do try to be a nice person but sometimes I just can't keep my mouth shut.

Especially if someone is really pushing my buttons, then I get really cranky. Here's an example: a group of friends are trying to get together for lunch and a museum. Around here, many public libraries have discount museum passes available on a first come/first served basis. I don't mind getting the museum passes, because I am cheap and it saves me money.

But one friend (and I am not making this up) called me, texted me, called my library, and texted me again in a five minute period to let me know that my library has the pass available for the day we want them, they were available, and could I reserve it. I didn't require babysitting and I sent her a text back to tell her that. That all got under my skin for some reason. Why did she need to do so much? All I needed was to be asked to see if I could get the museum pass.

Am I over-reacting? I don't think so. It made me feel that she thought I was incapable of checking on the availability of the pass and reserving it. Of course my inner child made me wait several days to actually reserve the pass to make her sweat if she decided to micromanage me and check again at the library.

I don't need micromanaging. I am quite capable of taking care of things myself. Allow me to feel a bit intolerant for a bit here.

The Cancer Balance

Do you ever wonder if you are focusing too much on the cancer in your life? Or too little? Before a cancer diagnosis, cancer probably occupies a little tiny corner of your brain.

After a cancer diagnosis, it takes up all but the little tiny corner of your brain required to do basic things like eat and sleep at minimal levels. After the initial stress, cancer-brain occupation slowly settles down to a somewhat manageable level as basic human demands for survival kick in - like thinking semi-logically.

Eventually you get to a bit more of an even keel so you get through life, after therapy, support groups, or whatever. Then life goes on, if cancer doesn't return, and you get some more of your brain capacity back and begin to think about life around you again.

So now, I wonder if I am thinking too little about cancer? Because I do not allow it to fill my brain all the time. Should I allow myself to think about cancer more?

Now that I have this knitting group with other women with cancer at the cancer support center, I feel like I am back in a support group sometimes. We have conversations about the ups and downs of diagnosis and treatment along with all sorts of related issues. I kind of like that part.

But it makes me wonder if I should be thinking (pondering) cancer more? I like being sort of back to my regular life without the cancer domination. As cancer is part of my life, should I be dwelling on it more?

Maybe I am still just learning how to balance cancer in my life.

A Year Out of Your Life

I have thought that 'year out of your life' business was a load of hooey. I mean how do you say that all my cancer crap will be done in a year and you will arrive at a 'new normal' and life will go on? That is not true.

However, Sandra Lee was diagnosed with breast cancer last March and she took a year off to deal with treatment and keep her sanity. I think that was the smartest thing she could have done. Smart woman. When you hear about most celebrities it is usually about they have this new 'cure' or cured their cancer through some herbal thingy. But she is a smart celebrity.

 If I was rich enough I would have taken a year off to get my head together. That would have been smart.

A Legacy?

Am I supposed to be leaving a legacy? Honestly, what is my life expectancy? I am sure there are calculators online but I haven't bothered. I just know that I probably won't live as long as most other people born about the same time as me with the same general backgrounds.

As you know, my health sucks so I don't have the expectation of being the oldest living person at whatever age that is. I could also get hit by a bus tomorrow or my cat could trip me on the stairs. I have no idea when I will go but I will at some point, as all the rest of you will.

So my question is am I supposed to be leaving some kind of legacy to be remembered by? I keep reading articles about all these cancer people who leave a legacy of some kind. My husband and I don't have children so once we are gone that will be the end of us. I mean our siblings will probably remember us, if they are still around but no lasting legacy.

Should I be thinking up a legacy to leave behind? Do I want to be remembered as something or someone, some how? I consider myself a good person and donate to charities, volunteer, blog about my health crap. But should I be doing more? If so why?

I think I am curious about this because I am wondering if it would give new meaning to my life. Do I need new meaning? Do I need to get behind a cause? Do I need to come up with a new cause? Or should I just continue to be me?

Does anyone else think of this kind of stuff, healthy or unhealthy? We finish our education and go out to leave our mark on the world. Did I make a mark or should I try to make a mark some how? Or how do I want to be remembered?

Life is full of these little questions. Existentialist or not.

Winter returned

For some reason winter has returned here around Boston. Right now wind chill is about 10 degrees, air temperature is 18, and we got probably 5-6" of snow yesterday. Last Thursday I was out gardening in shorts and a t-shirt. Yesterday I spent 9.5 hours (730am-5pm) driving in what felt like blizzard conditions. The snow storm was moving east and I was driving east.

The roads were horrible, snow covered, blowing and drifting snow. I probably drove past close to 20 accidents. I got stuck behind multiple conga lines of plows going 40. You know the road conditions are bad when the trucks are all going slow.

Last week I planted pansies in pots outside. Today they are buried in the snow. I hope they did not freeze solid. This will be a test on how hardy pansies actually are.

My plan today is to stay inside as much as possible. However I do have a doctor appointment today but not until late afternoon.

The snow should be gone by Thursday when it rains. After that I think spring will be back, for a few days at least.

Its a bad neighborhood

So I follow cancer research because I do hope for a cure one day.... what I have learned in the past is that scientists have believed that a single cancer cell would make it to a different part of your body and then start a new tumor. (Those were the evil cells.)

Now there is a new theory, that a group of cancer cells located together then grow into a tumor (known as a metastasis which none of us want). I can relate to this new theory. A single cell isn't a bad guy. Its when the rest of them are bad, they have nothing to do but hang out together and spread their evilness around your body. Like hanging out in a bad neighborhood.

I had never really thought about what the environment of a tumor cell would have to do with the growth of cancer until I had Dr Susan Love talk back about five or so years ago. She had discussed that new research then was interested in the neighborhood a bad cancer cell was in, not just the cell itself. This new research seems to show that train of thinking has been subject to research and now is showing more answers.

So now I must have a stern talking to with any cancer cells that may be hanging out in my body and tell them to stay away from each other. I am sure that will prevent any recurrence.....

So What Will It Feel Like?

Have you ever wondered what your next medical adventure really will be like? I mean how will they really feel during and afterwards? Nurses and doctors tell you things like "there may be some discomfort", or the ever popular "little pinch". Maybe you might feel "tired afterwards" or "possibly nauseous", or "a little pain" at the site that can be handled by "OTC acetaminophen or ibuprofen". But you really need prescription morphine for the pain, cant get out of bed for three days because of fatigue, or spend days running for the bathroom.

They never can tell you more, like the real truth. Bounded by HIPAA concerns or the simple fact that they have never experienced it themselves. Face it most of our medical professionals have never experienced the procedures they perform on patients. Sure they have had blood tests, injections, and more, but have they had your chemo protocol, surgery, or invasive procedure? Probably not.

Hence there is no way for them to tell you how you will feel before, during, and after, other than scared sh**less, because they really do not know.

I hate this. I have learned to research all medical procedures before I have them. I also look to friends and others who might have experienced it to find out what its like from the patient's perspective. (I am so 'healthy' my father, in his late 80s, asks if I have had any new procedure recommended for him.) I do not obsess about it but I do want a good idea of what something will be like.

I have learned some important things like do I really want to go by myself because I won't want to drive home. Or I can come close to passing out after in the knee injections. Or... the list goes on. So I have learned to ask questions and do my research.