Thursday, April 28, 2016

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.

Wednesday, April 27, 2016

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.

Tuesday, April 26, 2016

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.

Monday, April 25, 2016

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.

Sunday, April 24, 2016

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?

Saturday, April 23, 2016

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.

Friday, April 22, 2016

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.

Wednesday, April 20, 2016

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. 

Tuesday, April 19, 2016

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?

Monday, April 18, 2016

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.

Saturday, April 16, 2016

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!

Friday, April 15, 2016

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.

Thursday, April 14, 2016

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. 

Wednesday, April 13, 2016

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.

Tuesday, April 12, 2016

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.