Breast Cancer Treatment Benefits

Recently it was announced in a draft proposal that the UK's NHS would not cover faslodex to treat estrogen positive metastatic breast cancer. While this may be disappointing to some, at this point I agree with the decision.

The reason given for the decision is:

"While NICE [National Institute for Health and Care] Excellence acknowledged that it can stall tumour growth by up to three months compared to aromatase inhibitors, it said early evidence isn’t strong enough to show that the drug extends survival."

What is the point of spending millions of dollars on patient medication if it does not extend survival? This is a real problem with many new medications where they are shown to treat an ailment but the question often comes down to the length of extended survival. 

If you had metastasized cancer how much money would you pay and side effects would you endure to simply live a few weeks longer? I think we all want to life as long as possible but the costs to be endured can be too high. If you get side effects such as diarrhea where you are forced liquids and electrolytes to keep you alive, is that worth it? Bed ridden in extreme pain? Just because this stupid pill is slowing your tumor growth - and might be keeping you alive longer.

Again, we get to the discussion of quality of life. In my opinion that is one of the most important pieces of medical care. If you are suffering, do you want to be alive? Not me. If you are given so many pain medications that you don't know which way is up because of the other medications you are on, is there quality of life?

I'll be making my own decisions focusing on my quality life thanks.

So I am backing NICE here in this decision to hold off on approval of Faslodex, this fancy new drug that may or may not prolong life.

Determination only

Yesterday, I was talking to our cat feeder and her husband as they were walking their extremely large, muscled dogs past our house. We need to catch up on the latest cat issues (they are on a diet) before we leave on vacation.

While we were chatting, their dogs were looking at our lawn very intently because they know we have cats who are often outside. They can't chase them because they are on leashes. One of them is actually scared of the cat they have at home. But they can look. And bark a bit until they are stopped.

Boots is my little tag along. If he can find me, he will follow me. He loves me because I feed him, and because I found him when he was lost outside when we moved last year in January. And I stick up for him when Evil Kitty picks on him.

We were chatting and Boots had to follow me. Using sheer determination he walked up the hill until he was within ten feet of me and two large dogs. He just gave them a little stare down and then, while ignoring them, focused on me until the conversation ended. Once the cat sitter and her husband left with the dogs, he waited patiently for me to walk back to the house in hopes of a snack. He doesn't like dogs but its more important to him that he hangs out with me at all times.

Sometimes you have to pull yourself through life with determination only as Boots does. He wants to hang with me and he just ignores the bad part - the damn dogs. I do this too. I use determination only to get through life. I ignore the bad stuff and just push through. I can't let myself worry too much about the bad stuff a doctor might say to me, I am just determination to get through. Then I get to go home and hang out with Boots.

Distractions

I realize I haven't been blogging much for the past month or so. We went away for a weekend, we are on our second set of houseguests. This one came with a dog who freaked out one of our cats (who should have stood his ground and growled at the dog and he would have hid because he is really scared of cats).

I have also been dealing with lots of fatigue. What is fatigue? When you need 12 hours of sleep each day and then make it through. I also keep getting myself in places where all of a sudden I am so tired I can't function.

An example is this past Thursday. I got up and went to the grocery store and library in the morning. I didn't carry in all the groceries - only the perishables. I relaxed for a couple of hours and went to my knitting group. On the way home I stopped at a garden center for more vegetable plants. All of a sudden I was so exhausted it was almost too much to walk to my car and drive home. Then I had to lie down for about two hours just to recover to make dinner.

There is one thing of needing sleep. There is another that is too tired to function and not needing sleep. Just needing down time. Thursday afternoon I couldn't have slept but I just needed to be off my feet, watching bad tv in bed. (What is bad tv? TV which provides no redeeming qualities and is barely entertaining.)

I have had almost two weeks without doctor appointments - I haven't had one since the 10th. But this coming week I have the dentist, rheumatologist and someone else who I can't remember. And I need to get my bloodwork done on Tuesday.

I do not have that busy a schedule and sometimes even get together with friends. I spend a lot of time at home weaving on my loom and knitting. I also get to the library regularly....

Just a lot of distractions in my life. The benefit is the distract me from the state of my health. I am and will always be the most unhealthy person in my family. I have more health problems than my parents and they are in their 80s. My siblings are disgustingly healthy as well. My husband is definitely healthier than me too.

But all these distractions do lead to a basically happy life these days. I think that is the most important thing.

A Well Explained Reason for Ditching the S-Word

I hate the S-word. I am not an s-word. I am a person living with cancer. Its always just bugged me. A lot. I hate the fact that ACS designates anyone who has been diagnosed with cancer as an s-word.

But finally I found someone who really explains it well as to why you should ditch the s-word. I was catching up and finally reading a copy of Readers Digest from last September and came across an article called "Don't Call me a Cancer Survivor". The author is a hospital chaplain for the last three decades or so and was diagnosed with breast cancer in 2005. With her diagnosis she learned a lot.

"One surprising thing I found was that only a small part of the cancer experience is about medicine. Most of it is about feelings, faith, losing and finding your identity, and discovering strength and flexibility you never even knew you had. It’s about realizing that the most important things in life are not things at all, but relationships. It’s about laughing in the face of uncertainty—and learning that the way to get out of almost anything is to say “I have cancer.”"
Upon her diagnosis she was instantly given pink ribbons, told about the upcoming walk, luncheons, and more. Someone actually told her that her cancer diagnosis was her 'wake up call'. (She wanted to hit him but couldn't because it was right after surgery. I would have hit him for her if I was there.)

She realized that being a cancer s-word was taking over her life.

"That’s when I told myself, “Claim your experience; don’t let it claim you.” We know that the way to cope with trauma, loss, or any other life-changing experience is to find meaning. But here’s the thing: No one can tell us what that meaning is. We have to decide what it means. And that meaning can be quiet and private—we don’t need to start a foundation, write a book, or work on a documentary. Instead, perhaps we make one small decision about our lives that can bring about big change."

She did move on and became happier. As part of being a chaplain she sat with many cancer patients through their treatment. She also got to see her former patients later to see how they were doing. She met with one woman and her daughters to learn that she was now NED. She started telling her story of diagnosis and treatment again and that emotional roller coaster.

"At that moment, her daughters stood up and left to get coffee. I handed the woman a tissue and gave her a hug. Then, because I cared for her, I told her, “Get down off your cross.” She said, “What?!” I repeated it. To this woman’s credit, she was able to talk about why she was clinging to her survivor identity. It got her attention, and people took care of her, for a change. Now it was having the opposite effect and pushing people away—they kept leaving to get coffee."

That is exactly my point. An s-word is not a person. Its a label. It might help you get through treatment but its not you. Let yourself deal with the experience and go on with life. Do not let you become someone who you aren't.

Don't Go Quietly

Somewhere out there is a birthday/friendship card about the friend you want is not the one who will bail you out of jail but the one who is sitting there with you in jail talking about how much fun you had. I want to be the instigator who got us arrested for something like 'public embarrassment' and I have a couple of friends who would be sitting in jail with me.

I have two old friends who might be sitting in jail with me (you know who you are - don't deny it). One is a friend from college and one is someone who I started working with in the mid-1980s - you know who you are!

Back in 1981 I was told I had thyroid cancer and I should take it easy for the rest of my life, get plenty of rest, eat right, blah, blah, blah. I then thought about it and decided I would not play in traffic but I wasn't going to stay home and do nothing. (Hence, 10 Club Med vacations by myself but that's another story.) I have also done a lot of other travel, adventures, and finally some medical mis-adventures.

But I have also learned to cultivate a list of heroes, of people who I admire who have not gone quietly. Just last week, I learned about another person who did not go quietly. That is how I want to go. I'm still working on the details.

Do not go gentle into that good night
Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

Living Without Cancer

I have had further thoughts on my post from the other day on Not Talking About Cancer and then more thoughts. As I wrote about enjoying not talking about cancer, it really made me think. What if you didn't even have to consider talking about cancer or not talking about cancer? Because you had never had cancer?

I think this is the part that I am stuck on and really struggle with at times. I have never been an adult with out cancer. This is very difficult for me. I went from being a fun loving, college freshman to a cancer person. (This means if you got to know me after August 1981 you never knew the pre-cancer me.)

If you have had cancer, can you think about your life before and after cancer (and none of that 'new normal' bullshit) how have you changed? How has your cancer diagnosis changed you? What is different about your life?

I couldn't tell you what is different about my life, before and after cancer. Whatever equilibrium I reached after my first cancer diagnosis, it was shattered by my second one. I do know that having cancer once before, gave me some additional experience for my second diagnosis, but even then I wasn't prepared.

No matter what I think you are never really prepared for life as a patient instead of life as a person. My big struggle is to learn to cope with this in life. Perhaps this is why I have therapy?

Talking About Cancer, Or Not

I have a lot of friends these days who have had cancer. And then I have friends who have not had cancer but sometimes we still talk about cancer or my health. But then I have friends who do not have cancer or any big ailments and don't really know about the disasters of my health so we talk about other things. Like life.

Recently, through the wonders of social media, I reconnected with two old friends from high school who I hadn't seen in decades. I have sort of told them about all my health issues. But definitely not all of them. I have gotten together with one or both of them a few times.

I got together with the one who I was closest too in high school for coffee a few weeks ago. An hour and 45 minutes flew by. We talked about her mother and her siblings. We talked about her daughters. We talked about life in the area - she lives about a mile or so from us.

We decided we need to get together more often and made plans for our next meeting. And we never talked about my health. It was really nice. I need to do that more often.

Further proof there is life outside of cancer crap (and if its cancer, its crap).

It also made me think that I need to do that more often. I need to have conversations that allow me to focus on my life outside of my health.

Has A Cancer Diagnosis Changed How You Think?

I was reading over at KatyDid Cancer that she turned 41. After being diagnosed with breast cancer before 35 she was never sure she would get to 40, or 41. (But now she is thinking 50.)

This made me think. How do I think about how long I will live? And how would I think differently about how long I would live if I had never had cancer?

At 19 (and invincible) I had no thought of how long I would live. Because I was barely an adult and between my freshman and sophomore years of college. And longevity was the last thing on my mind. I just assumed it would be shorter than without cancer.

At 45 I was more responsible and married with a second diagnosis. The thought of how long I would live definitely popped up again. But what was most concerning was how would I have thought differently if I had never had cancer? I have struggled with this one: how had my life been impacted by cancer which was something I never wanted. 

During the intervening years my thought processes had changed of course. But how would I have thought different if I never had cancer? I never really had a chance to be an adult without cancer so I have no idea on what I would have thought.

But since I can not undo the past, I have to settle with my current thoughts. Which doesn't give me any good answers.

Quality of Life

I don't know why this took a research study to figure it out. One of the key factors in determining health outcome is health related quality of life for cancer people.  A recent research paper was published which analyzed quality of life factors in multiple cancer trials.

"Of the 30 trials included in this analysis, 3 trials assessed a total of 321 breast cancer patients of any type or stage. After accounting for multiple variables, physical functioning, emotional functioning, nausea and vomiting, and global health status were all predictive for survival among breast cancer patients.

Physical functioning, as assessed by the questionnaire, includes the ability to perform various degrees of effort, such as walking or carrying heavy loads, as well as basic functions such as eating, dressing and washing." 

At my second cancer diagnosis, physical functioning was not an issue. Now, its a different story, walking any distance or carrying things is much more difficult.

"Emotional functioning includes attributes of depression and mental well-being, such as difficulty sleeping and often feeling worried, tensed or irritable."

After one cancer diagnosis, I knew better and made sure I took care of this part. 

"Often feeling nauseous and vomiting were also found to be predictive of worse cancer outcome."

Nausea was my 'frenemy' during chemo. I spent more time feeling nauseous (but that didn't mean I lost any weight). And I'm still here so the jury is still out.

"Global health status includes attributes of both functional and emotional well-being, as well as the effect of disease or treatments on family life, social activities and financial situation."

Family and social stuff took a back seat during treatment because they were less important to me. I did what I could but my focus was on getting through treatment. It was a bummer that I got laid off two weeks before my diagnosis so there was a financial issue but I did get a part time job during treatment that helped.

Back to the emotional part. At my second cancer diagnosis, I knew what it was emotionally like to go through a cancer diagnosis, not cope with it, ignore it, and waste a lot of time on it. I also knew because of how I didn't deal with it, that it took a long time for me to learn to accept it. 

But at my second cancer diagnosis, this was one area where it I was in control and I could make a difference. So I did. 

One of the most important things in my life to this day is my quality of life. This has lots of components but (in the words of Donald Trump) it is HUGE! Why? Because it is in my control. 

The components include everything from where I live, what I do, who and what I include (and exclude) in my life, how I handle my treatments, what doctors I see, what I do to make me feel better. I make a point of getting rid of any one or anything that is toxic in my life. Stressful situations are avoided if possible. Making sure I do anything and everything I can to make me feel better emotionally, which is tied very closely to how I feel physically.

So, my advice is that if you feel like crap or are facing any kind of crappy diagnosis, focus on your quality of life.

Fibromyalgia

How is life with fibromyalgia? Well, not so fun.

Let's see, there is random pain in my body. There is fatigue (and insomnia). There is cognitive impairment. And depression.

Sometimes its hard to decide how I feel from a specific ailment. I mean which pain is bad back, rheumatoid, fibromyalgia or osteoarthritis. I can't always tell. My doctors say it can be very difficult to tell and not to worry about it. But I can tell you when I lie awake at night that I will be exhausted in the morning, like today.

And there is another factor that causes so much fun in my life. Cognitive impairment. Yes, that is like chemo brain that doesn't go away.

Depression? Yes, well lack of sleep, no brain cells and random pain would depress anyone. This is why I keep being asked if I have any suicidal thoughts. I can tell you I do not. Because it would be yucky! I would like to stick around for as long as possible.

I hadn't really contemplated the impact of all the joys which come with a fibromyalgia diagnosis. It came on top of my RA diagnosis, or mixed in with it. But I read this article this morning about a woman's lawsuit against her former employer because she was dropped from their disability plan after she left her job because of health reasons due to fibromyalgia.

I get the same issues she does. But I could never job three miles every day.

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?

Life with chronic conditions

I may whine complain about a lot of the crap I deal with in my life. I also may be a tad cranky about getting my meds so I don't hurt all the time.

I have a therapist for talking about stuff and I have a meds therapist who keeps me on an even keel. So any issues with depression are held back. I have people to talk things out with. And I know my ailments are not in my head.

I get exercise to help maintain my body as much as I can before my ailments compromise it further. Its not age that is doing this to me.

But so many people just don't get it.

I have a friend with a chronically bad back who has a fair amount of pain. But she doesn't see a doctor about it. She does occasionally see a physical therapist. She has no prescriptions for pain meds because she gets her sister's prescription. She doesn't exercise regularly. And she doesn't understand how I live in pain and have to beg off on group events or leave early. Since she's there and in pain she doesn't understand why I can't stick around.

I also have friends who want to go out at night to do things. Since not much is allowed to get between me and my 930 pm self imposed curfew, I don't go out much. If I do, it needs to have a comfy chair that provides good support. And it can't include any amount of walking or standing.

Finally I have an expiration period. If I am out too long, I spend a long time recovering. So if a friend is late and I spend time waiting around for them, especially if I am standing, I don't get to fully enjoy my time out and end up leaving early to go home and rest before I need to spend a couple days recovering. Therefore I don't spend time with friends who are late.

My husband does understand me. He claims that if I do things I shouldn't or for too long, I am crabby for a day or two. Apparently he doesn't like me when I am crabby. Maybe I should rip off that fake smile and let my inner crabbiness show and then more people might get it.

The hanging sword over your head or embrace each day

I read an article this morning on how a cancer diagnosis changed a couple's perception of life. Without a cancer (or other icky) diagnosis, do we view the definitiveness (yes that's a real word - I had to look it up) of our lives differently than with one? Does the hanging sword called cancer, redefine us, or how does it redefine us?

I struggle with this one sometimes. I was barely an adult (19) when cancer first dropped into my life. Therefore I am not sure I would know how to be an adult without cancer. But have I learned to embrace every day for what it is? I'm not sure either.

I do agree that once cancer appears, life in Cancerland is very different than life without cancer. At my second diagnosis I was pushed deeper into Cancerland than I was before. So as I was pushed in deeper, I pushed back and focused on taking better care of me emotionally. I was more sure of what I was not going to let cancer do to me again - it was not going to take any more fun out of my life. Or suck any more time emotionally from me.

Now almost 9 years from diagnosis number two, do I still feel that hanging cancer sword over my head? Yes. But I feel I have pushed it up higher and further away. Has it changed me? Yes, and I hope I am a better person than before.

After my first diagnosis, if someone I knew also knew someone with cancer, they would somehow get me in contact with them. I didn't always feel comfortable talking to someone I didn't really know who had cancer. Because I had cancer, I was supposed to want to talk about it? I didn't. And that wasn't the best way to cope with my health.

Now I reach out people I meet with cancer, because I don't want anyone to go through all the same hell I went through. I want to help them push that hanging sword further away. Let them embrace their life and not live under that sword.

From the article I read:

"The gift of the diagnosis — and it’s a tough one to embrace, but what choice do we have? — is to dedicate ourselves instead to embracing every day with the particular passion that comes from knowing the number is finite. I am just as glad I don’t know the number of days remaining to either one of us, but I know every day, I have one less. I had better make the best of them all."

Maybe I'm doing better

So people ask me how I am doing. Or if I miss a phone call they want to make sure I am okay. But maybe I am doing better. We moved and I get to live on a single floor most of the time. I retired and have more time to get things done.

However I still run out of energy, regularly, maybe even every day. Well, not every day, just a fair amount of time. A few errands and then I need a nap. So unpacking is going slowly.

I have had two days back to back of lots of errands and I ran out of energy both days. Last night we had pizza delivered because I was too tired to cook and then I fell asleep on the sofa. (I hate when I fall asleep on the sofa because then I have to get up and get in bed to go back to sleep and I never feel rested after that.)

Today I have some phone calls and one errand. I will take it easy and get plenty of rest. This may mean less unpacking but I think its more important to get some rest. And I am behind on my Lifetime movies on the DVR....

I do think we have a better quality of life here. The news from yesterday's local police report included: "At 12:35 p.m., an injured squirrel was reported." Not that I had concerns for my personal safety where we lived before but if local crime includes an injured squirrel, I think its a safer place to be. And the cats would be happy to check on the injured squirrel for the police.

Becoming more daring

As your health declines do you become more daring? You hear about people coming up with their 'bucket list' and include things like parachuting, hot air ballooning, or other crazy things they never had tried before.

I apologize but I have been thinking this morning - something I should never do according to my husband. I read an article this morning by a base jumper who took a 102 year old woman on a jump. And she loved it. And she went on to riding an elephant and going on a hot air balloon ride. The risk of death in base jumping is much higher than regular jumping out of a (perfectly good) airplane.

Why do people come up with all these ideas, like base jumping, parachuting, and more, to put on their bucket list? Its one thing to see the Taj Mahal, Eiffel Tower, Grand Canyon, or some other exotic place. But its really another to try something that clearly has a high death risk, like base jumping.

Do we become more daring as we are nearer to death? Do we really have less concern for potential death and seriously injury as our health declines? Are we just trying to restore some sense of normalcy as we can no longer partake of many other activities?

'Well I can't climb a mountain anymore so I might as well jump out of an airplane.' Well, why not? No, I'm not going to jump out of an airplane even though I can't climb a mountain anymore. But should I take up other activities?

I'll have to think about this. Do I want to become more daring? Or do I accept I know my limits?

There's nothing good about thyroid cancer

Thyroid cancer is often called the 'good' cancer. There is nothing good about any cancer. Even though thyroid cancer is slow growing and results in proportionally fewer deaths than most other cancers, it does have significant impact on the patients.

Now new research shows that there is a significant decrease in quality of life after thyroid cancer diagnosis and treatment. Personally I am very glad to see this study as I have always felt me it threw me for a (really big) loop and took me a long time to recover.

"A quality-of-life assessment tool measuring physical, psychological, social and spiritual effects was completed by all participants. Researchers also collected data on demographics, medical comorbidities, tumor characteristics and treatment methods. Most participants were recruited from survivorship groups (79.2%)."

I think that because of the unfortunate increase of thyroid cancer rates that this research was warranted.

"Distress of initial diagnosis, distress of ablation, distress from surgery, fear of a second cancer and distress from withdrawal from thyroid hormone yielded the lowest individual quality-of-life scores."

Um, I could have told you all that. Decades ago. And yes my worst fear did come true when I was diagnosed with a second cancer.

On ignoring doctor's advice

I am not going to say doctors are gods or anything, but they did go to school for many years more than I did so I can easily admit that they might know more about medical crap than I, even if their bedside manner really sucks at times.

I also strongly believe that as patients we owe it to ourselves to do our research, listen to our options, and do what we feel will help us best. And if this includes juicing, yoga, fasting, acupuncture, turmeric, coffee cleanses, or whatever, we also owe it to ourselves to listen to the advice of our medical professionals.

It is a real shame that some people die when they choose to ignore medical advice and advancements. New research out of Australia focuses on young cancer patients who are ignoring medical advice to cure their cancer through diet changes and result in unfortunate outcomes. These popular bloggers are not properly trained medical professionals so its not that surprising that these are the results are what they are.

If diet could cure us, we wouldn't need doctors.

We must listen to our doctors advice, and sometimes question it, but heed it for the most part. If we don't listen to our doctors and heed their advice, we can't fully question it and then make our good decisions based on our experience with it.

Chronic Illness Truths

I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.

Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.

I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.

Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.

I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.

Lets talk about drugs and their pricing

There is new talk about looking more at drug pricing. This also applies to other drug pricing.

Okay, here's the discussion. If drug A costs $1000/patient per month and drug B costs $300/patient per month, drug A is obviously much more expensive than drug B. But if B doesn't work quite as well as A, there is a problem. Because if B results in quality of life issues and hospitalizations and shorter survival rates, there will be additional expenses so the cost savings is not there any  more.

So now the proposal is that we must look at toxicity and efficacy. This means that we need to look at issues such as quality of life, hospitalizations, and survival rates.

I like this idea. If a less expensive drug has more adverse reactions, is it better to go with the more expensive one? I think that depends on the side effects. For example, I have two rheumatoid medications. One of them causes me to have a suppressed immune system and I end up with a bad cold that lasts a week or two, every couple of months. But the other one can cause nausea (my favorite) and is harder on my liver, and may not keep my RA suppressed as much.

So I have to decide which is better for me. Lots of colds which cause lost income etc or bits of nausea, potential liver issues, and RA pain.

I am still on the fence about this one.

And the same applies for breast cancer treatment with Tamoxifen. This is the baseline drug for preventing recurrence. But if the side effects are too much and end up affecting the patient's quality of life, is it better to switch a newer, more expensive alternative?

But others are promoting more discussion on this topic.

Muddling through life

My life is not that exciting. I am not that exciting a person, period. I can actually be pretty boring. I spend a fair amount of time reading, knitting or watching TV - partly because I need downtime to keep going through the week before I get too tired out. I harbor my energy until something exciting comes along.

My one exciting event that occurs regularly are doctor appointments where we play "what's wrong with Caroline now". This week, for example, I have two doctor appointments - Monday I had my rheumatologist, Friday I have the eye doctor. I think I have at least one doctor appointment next week. How exciting. Not really. Just leaning towards a bit stressful.

Unless someone is an epic tweeter or celebrity, I don't think most of us live exciting lives. This is fine with me because I just want to be a normal person who muddles through life. That's much better than being a patient, because that gets too stressful.