Life After Breast Cancer Does Suck

Here's the truth. "The Secret Suckiness to Life After Breast Cancer". Go read it. Judith Basya writes the truth. There is no new normal. Cancer lurks for ever. And life on some levels, really does suck after breast cancer. And they never told us about it and we don't get to talk about it.

Judith raises some good points including this one which resonates with me most:

"And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?"

Yes, really? Why don't we talk about post breast cancer suckiness in therapy and not at the dinner table? Our family members are dealing with it all the time so why isn't it acceptable to discuss the latest brain lapse or hormonal therapy induced crabbiness between chicken and broccoli? 

In addition, remember when we were first diagnosed we would get these questions from our friends with that 'look', how are you doing? Now they ask in a lower voice 'how are you doing?' as if it better not be back, is it? 

Seriously? I'm done with that. If you ask me 'how are you doing?' in that coy little lower voice, I'm going to say things like well my knee surgery has complicated things and my back pain is better. I am not going to say the c-word because I am so sick of being asked about it. Believe me if I can get cancer again, you will hear about it. And I won't whisper. Because it should not be a secret.

I thought we got rid of all that cancer secretiveness in the 1990s when those pink people stuck a ribbon on everything. 

But I digress, go read Judith's article and you will begin to understand what life is really like after breast cancer.

Why Do We Need To Be So Precise?

Remember when we were children and the weather man would say things like 'tomorrow should be warmer than today and there is a good chance it will rain in the afternoon'? Now its more like: 'Tomorrow will be about five degrees warmer than today and there is a 40% chance of scattered showers tomorrow afternoon'.

You used to get stuck in traffic and you would listen to the radio or talk to the other people in the car and figure out you will get moving again soon. Now Waze tells us the slowdown will add 7 minutes. Is that really important?

And the biggest one is with analog (hands) clocks and watches we said it was around quarter past 8. Now its 8:13.... Do those 2 minutes make that much of a difference (unless you are soft boiling eggs)?

We do this with our ailments as well. If you look at the survival statistics for any cancer, you can find out what are your chances of making it to one, two, or five years. Does it really matter to you if your chances of making it five years are 90% or 7%? Does that change any of your actions?

I was told by my oncologist that going back on Femara will reduce my risk of recurrence by a couple of percentage points. Why do I need the detail? Either it will help or it won't. Yes its nice to know by how much it improves your odds but....

I have been amazed recently by how much we care about these little tiny details? Do we need to know there are 500 calories in that meal or that its about 1/3 of a day's worth of calories?

How much time do we waste worrying about tiny little changes that become minutiae in the big scheme of things? If you are dieting, you probably want to skip that second cookie or even the first one because that's common sense. Every thing matters in life but when the things get so small do we need to stress about them? Are we creating more stress for ourselves by obsessing over the details?

[I hate ending a blog post with a bunch of questions. I think of them like the book club discussion questions at the end of a book I enjoyed. I do not expect an essay back. I just write what I think.]

New from ASCO - Widely Used Breast Cancer Chemotherapy Falls Short

I held my breath while watching this video. (If I could figure out how to embed it I would.)

There has been a lot of discussion over the years of the benefit of anthracyclines in breast cancer chemotherapy because of potential cardiac damage - in addition to all the other nasty side effects it may cause. Doxorubicin or (Adryamicin or Rubex) is known as the 'red devil' for its red color and it is so toxic that when administered by IV the nurses wear protective gear. (You feel so safe that they are wearing protective gear and it is going in your veins.) Its also the one that causes hair loss and all sorts of other fun.

Announced at ASCO, new research on the research on it has shown that by adding anthracyclines to the taxane/cytoxan combination has a significant positive impact on long term survival. I held my breath because I wasn't sure if it was going to show me that I had received what is now seen as the better combination.

I really hate this when this happens. Some had recommended removing anthracyclines from breast cancer chemotherapy protocols because of the damage because the potential cardiac side effects. Now it seems that was the wrong action to take.

Changes like this cause cancer patients to second guess their doctors. You can't go back and do the same chemo all over again with the anthracyclines added. It doesn't work that way. The doctors were following the best practice standards at the time. But then it leaves us patients in the lurch. Thank you very much!!! Triple grrrr......

When doctor's give orders

I ran into two instances where doctors were giving orders, to patients. Basically they were giving the patients orders to obey them and make them toe the line.

In one instance a friend of mine who was a heavy smoker was told he had to prove he had quit smoking for a month before the doctor would perform his back surgery. Yes, I know smoking is a nasty dirty habit. Yes, I know it can do horrible things to your lungs and the rest of your body. Yes, I know quitting smoking is a very good way to improve your health.

But, the doctor had his surgery scheduled and then he was in a fender bender so it had to be delayed. Now the doctor won't schedule his surgery until he has quit smoking. So if my friend needed to quit smoking because of surgery concerns, why did the doctor not make this an issue before? Why is it now? This does not make sense.

Then another friend who is a grandmother and is long since done having children wants to have a hysterectomy. She even has fibroids and her doctor says no. She's not ready? What? He's not giving her a real answer.

In both cases, I feel that the doctors are asserting their opinions without thinking of the patient's concerns. This is not right. I think both patients should find new doctors. I would not put up with that crap from any of my doctors.

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.

Is there a PCB connection?

One of the many questions I have about my health is 'why?'. As in why the hell do I have all these ailments? You cannot imagine how many little conversations and convoluted theories I have had with myself as to why my health has been in the toilet for so long.

I mean there is no history of breast or thyroid cancer in my family. My mother and grandfather have rheumatoid arthritis but I was told that I would probably not have RA but possibly other autoimmune disease such as lupus, etc. But no, I got them anyway. And I have the eternal question 'why?'.

One theory is PCBs. Research has shown that PCBs are carcinogenic. It has also shown PCBs can influence the immune system and cause hormonal issues due to estrogen mimicking. But is this really true? Could there be an impact by PCB exposure that could possibly have contributed to my health?

Then I found out the elementary school I attended for six years was full of PCBs and was torn down as because of the health impact it could have. Then yesterday I learned that Malibu High School was shown to also have PCBs and three teachers whose classrooms had the highest levels of PCBs were diagnosed with thyroid cancer.

One of the reasons I learned some things about PCBs yesterday is I spoke with a reporter who went to the same elementary school with me who is writing an article for TakePart.com on PCBs in schools and related health issues. It should be out in a couple of months. I am sure our conversation was a very small portion of the article, if any, but I am very interested to see what he says.

So where does that leave me? Could there be a cause here? Or am I grasping at straws? Still? The proverbial why question eternally unanswered. Or maybe not.

Unwanted interrogations

I really despise this. You reveal an ailment and get an interrogation in return. It doesn't matter how well you know the person, you just want to shut them up.

Recently, when asked about my wrist brace, I said my usual 'its a combination of tendinitis, tennis elbow, RA and more'.

These questions ensued:

Have you had a cortisone injection? Yes, two.
Do you take anti-inflammatories? Yes
Do go to PT? No but I go to a gym which is run by physical therapists.
Do you take vitamin B6? Yes to shut them up (and then I went home and checked my vitamin bottle).
Do you meditate? No but I knit and crochet and it has been shown to have the same effect.
Have you tried acupuncture? Yes (but not in the past year or so - something I didn't share).

I am so glad I didn't mention any other ailments.... The questions might never have stopped.

Do I know you? No. Is it any of your business? No. Do you mind shutting up now?

Trapped in the breast cancer bubble

I look at my life these days and see breast cancer everywhere. I have a breast cancer blog, I have breast cancer groups on Facebook. I have breast cancer friends - people who I would never have met if not for my diagnosis. I have Google alerts for breast cancer which send me a daily dose of updates in the breast cancer world. I get emails from many organizations and websites on their latest news and fundraising efforts. I have more profiles on different cancer websites than I can remember that I should keep updated. I volunteer for organizations that support different cancer causes.

Am I supposed to embrace this into my life forever? Or am I supposed to ignore it and focus on my other health issues? Or should I ignore them all?

I was told a breast cancer diagnosis took a year out of your life and then it would return to normal. I can't remember which idiot told me that one but it is definitely not true on so many levels. I am in this bubble and trying to figure a way out.

I realize that breast cancer is one of the top killers of women in the US each year. But is it supposed to take over each of us as we are diagnosed and change our lives forever? Yes a cancer diagnosis is a life changing event but should it become the focus of everything else as well?

My world is not painted pink, its painted breast cancer.

Dealing with health problems

With a nasty medical diagnosis, such as cancer, chronic illness or pain, one is left with a few questions which a medical professional cannot answer. You get to figure them out for yourself because you have instantly received an advanced degree in being human along with your diagnosis. There are five key questions to grapple with. I did not make this up I stole borrowed from the RA Guy and from here. (I like the RA Guy, he gives lots of good advice to me.)

The questions are:

1. Do we talk openly about our health problems or keep them private?

I think this is a personal decision. If you are Robin Roberts and can get the best medical care and organize a million supportive fans in no time, maybe talking publicly will work. It also means opening yourself up to a million questions and stupid requests. "Is that your hair or a wig?" "I'm sure if you take a nap you can come to my party and stay until midnight."

There is a middle of the road answer you can do what I do. Write a blog and send everyone who asks questions to read your blog. That way you can also control the flow of information. Whatever works for you. I do not recommend keeping quiet because talking about it may help with stress.

However I would be cautious in talking about your health in the work place. It is no business what your health ailments. You can just say you have health issues and need to alter your schedule to go to doctor appointments.

2. Do we ignore a new symptom or do we call our doctor?

That fine line between hypochondria and ignorant bliss. I have adopted the two week rule for myself. If it still is a problem for two weeks I start taking notes, consider the severity and then debate the doctor call. Sometimes I do a little research and find out my new symptom is part of my new diagnosis. I did not know people with fibro get headaches. All of a sudden I have been getting headaches, I now write them off to fibro and ignore them. Unless they make me cranky.

3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?

Hmmm... common sense tells me to do whatever seems will help within any limits my doctors have given me. I am not about to try yoga, no matter what people tell me, because my doctor has expressly forbidden anything that involves twisting my back and holding poses. I did acupuncture without any other consent. I just had to get over the icky needle thing first. I am very hesitant to take any herbals because of the number of medications I am on and how many problems I have had with interactions.

4. Do we push our bodies to the limit or do we play it safe?

That's an easy one for me. If I do too much I spend a day in bed. I have a new exercise plan that I can get through my entire workout and still function as a normal human being with is my goal these days. My life is carefully scheduled to allow or down time.

5. Should we fight aggressively to retain our health or should we accept our fate?

There is always hope. Never give up! I can't say anything else on this.