Sunday, March 16, 2008

Sign from God?

I had a strange vision last night - a vision rather than a dream, since I was awake.

I saw a stack of papers - documents, research papers, articles - on a little table next to my bed. (The little table was real, the stack of papers was not.) The pile of papers was about one meter high. It wasn't a neatly stacked pile of papers with the sheets nicely lined up at the edges. Instead, it was quite messy and chaotic looking, with corners sticking out here and there.

The image and background were in black-and-white, but there were three sheets of paper in the pile that stood out because they were purple - one near the top of the stack, one in the middle, and one near the bottom. These three purple documents were scientific articles about a drug called Femara, which has recently been in the news because new research has shown that the drug can cut the risk of breast cancer returning by 61 percent.

I should put this vision into context. I'm currently on my fourth round of chemotherapy since I was first diagnosed just over two years ago. After the first course, I was cancer-free for ten months, or so I thought. Then I had a recurrence (chest wall, lungs, sternum) and began my second round of chemo with a new set of drugs.

After four months on this new chemo regime, we found my cancer had spread to my liver. That led to my third round of chemo with yet another set of drugs. After just one month of this round, we discovered that the cancer had spread to my brain and further into my liver, lungs, and bones. Now we're trying out a fourth set of drugs, but we don't know whether it's working or not because it's too soon to tell.

This is the dilemma I'm in now: It might take up to two months to know whether or not this new chemo regimen is working, but if it's NOT working, then the cancer could get me during that time. So while we're in the process of figuring out what might keep me alive a little longer, I could die.

You can see why I and my network of friends have been trolling the Internet for the past few weeks looking for information on the various chemo drugs out there. I have piles of research at home, hence, this vision I had. The chaotic and disorganized state of the pile of papers in my vision reflects the confusion and mess of all the research I've been wading through.

Maybe this vision is telling me that in the midst of all that mess lies the answer to my cure: the three purple papers about Femara. Maybe this is God's way of telling me that Femara is the drug that will save me. (Maybe God doesn't know that PINK is the color of breast cancer, not purple.)

Luckily, I have enough sense not to believe in visions. Femara is a drug that works for breast cancer tumors that are hormone-receptor-positive. My cancer is hormone-receptor-negative. Think how dangerous it would be if I foolishly ignored this fact and went along with my vision and switched to Femara. I doubt any doctor would allow it anyway.

So much for visions and signs from God. You can see why, if I had a vision of an old man in a white beard and flowing robe, I'd be more likely to believe it was Colonel Sanders in pajamas than believe it was God.


Jin said...

Well, you already know how i feel about this issue. As far as I'm concerned, the phrase "blind faith" is a redundant concept. I personally prefer to "trust but verify."

Even doubting Thomas was eventually shown some evidence in the end, for crying out loud! I have yet to see any evidence at this point. And I'm certainly not holding my breath on that one!

There are many people who would have taken your vision as a sign from God. And they would have been totally off the mark. Just because someone interprets something in a particular way, doesn't make it so.

No further comment.


Anonymous said...

Hi Shin,
Here's a picture of a breast cancer cell under the electron microscope. Looks like a purplish pink to me. They call is blue. I see it as purple. Maybe when you are getting your chemo when that happens again you can visualize the chemo attacking these pesky little purple marshlallowy thingamajiggies
Might have to copy and paste the link into your browser to view it.
San Rafael CA

Anonymous said...

I don't think this is a sign from "god", rather a reaction from your brain to all the research you've been doing. It's maybe a subconscious response, it might be that something in your research triggered off something that you thought would be good for you?
I've done a little bit of research into blogs about Femara. All of the women who talk about it say it causes immense pain, particularly bone aches, they feel about 100. Obviously it is different for everyone. I don't know, I certainly wouldn't take it as a sign from god, but because I believe that we ultimately know what's good for us, I would just say to you to do more research and be more informed (like I'm sure you will be!!)

Anonymous said...

I believe that instinct is what you should be going for. You've always said "trust your instinct" but you have always let Drs lead you.

Maybe you should be trusting your instinct more & do your own research & let the Dr's sigh the exasperation after... when you have proved them wrong! There's nothing more natural than instinct. It's the body's way of preserving itself for as long as possible.

Anonymous said...

I'll qualify that by saying that you've always had your own gut instincts that what the Drs said in your diagnoses were wrong, but you listened to them.... I don't believe that you could have done anything else in your control (or your instinct) to combat your cancer. But you always had a gut reaction to certain things that were true. Only you are in control of your body, well, to a degree, that insidious cancer has taken over to a degree, but Drs are human, in a way anyone who has a disease is a guinea pig - Drs don't know. They just try out on us. Only YOU know your own body. Only YOU can tell. If you have a gut feeling for something, you should go for it. That's my view.

Anonymous said...

Femara is usually presribed for postmenopausal women with hormone receptive cancers. Drs would probably presribe Tamoxifen instead if they think hormonal therapy would work for you.

A person's hormone receptor status can change but it is very rare.

Anonymous said...

I think that Hanna in San Rafael is a friend or acquaintance of my sister Bibi Reber in Larkspur, CA. She asked me to see your site and offer any help because I am also in battle here in Paris, France, hopefully battling well this time now 3.5 years.
Are you doing anything complimentary, to help slow the process, and help youself buy time?
Are tumor sensitivity tests available in Singapore? Do they have hyperthermia treatments or interveinous VitC or anything almong these lines? Did you contact Pinestreet Clinique in San Anselmo for their advice?
Have you tried Xeloda, Avastin, Zometa, Navalbine or a Taxotere/Taxol round?
Any Chinese medicine?
Have you been keeping a high PH level?
I will return to this page for your response.

Shin said...

Dear Anonymous re: Femara,

Thanks for your comments. I think they could be helpful to other readers of this Blog who are also going through breast cancer treatment.

Yes, the studies were done with postmenopausal women who had finished a five-year course of Tamoxifen.

My chemotherapy has brought on premature menopause, so I might be considered postmenopausal now. But that doesn't quality me for Tamoxifen or Femara.

Yes, hormone receptor status can change, but my understanding is that it can go from positive to negative, but not the other way around.

Shin said...

Dear Anonymous in Paris,

Thanks for taking the time to help a complete stranger. Great questions. Here are my answers:

1) In addition to the conventional medical route, I've been taking a number of vitamin supplements and have been on a strict diet for the past two years. I've relaxed on the diet somewhat lately, NOT because I don't believe in it or because I've given up, but because I'm allowing myself a little pleasure these days.

2) I'm not sure what you mean by "tumor sensitivity tests". Do you mean the ER/PR test and/or the FISH test for HER2/neu? If so, I've tested below the 10% cut-off rate of most labs for ER/PR, so I'm hormone receptor negative. My FISH test showed I am HER2 positive.

3) I haven't looked too much into hyperthermia treatment for cancer because it doesn't make a lot of sense to me. I have cancer cells that are so aggressive and strong that they've defied all types of chemo drugs, radiation therapy, and surgery. I can't see how raising my body temperature by several more degrees than fevers I've had, could kill and keep cancer cells away. Plus, this treatment is in research and there's no data to show its effectiveness.

4) Intravenous Vitamin C treatment. Again, it doesn't make sense to me that a high dose of any vitamin can kill cancer cells that have been strong enough to resist death by chemo that is so toxic that it's killing everything else in my body. Plus, at such a high dosage, I think it's possible that the antioxidants in Vitamin C can interfere with the chemotherapy. Antioxidants in general protect cells, and that includes cancer cells, which is why most doctors don't recommend taking any antioxidants during chemo. I DO take many antioxidants in the form of vitamin supplements, and of course, the food I eat. But an IV drip of Vitamin C seems useless at best, and MIGHT decrease the effect of chemotherapy at worst.

5) No, I have not contacted Pine Street Clinic in San Anselmo. But I've had no shortage of people offering me all sorts of alternative Chinese and Indian therapies. I live in Singapore, which is mostly Chinese. Well-meaning friends have offered everything from acupuncture to special mushroom powders to tai chi. I'm trying some of these therapies, but cannot possibly try all of them.

6) I've been on Navelbine and Taxol. The others, not yet, for various reasons.

7) My latest test shows a PH level of 7.0, - the same as it was just after I was diagnosed, and within the normal range at which both cancer and healthy cells can live and reproduce.

Anonymous said...

Your'e such an inspiration. And only god could be responsible for creating such a gem of a person.

Anonymous said...

From Paris,
I guess I am always trying to cure myself and the whole world at the same time, but this thing is so complex, and so individual. I see myself in all the newly diagnosed cases in my English Support Group here and the Cancer for Karate class, and I wonder if someday I will be in your position, which is why I am also looking ahead with respect, wonder and openness at people like you who are courageous, brave fighters. Carry on, carry on, for you fight for us as well. Your blog is a beautiful inspiration and I am thankful for all the contact with others like yourself and for the vast, diverse information that the internet has provided me in my search for answers.
I'm off to a favorite Parisian church, Church of the Miraculous Medal, and say a prayer for you and I today, I'll pray that you'll have some good news, and some peace today.

Anonymous said...

The study below mentions an individual with her hormone receptor status changing from negative to positive.

Anonymous said...

Sorry that the link sent in my previous coment was truncated.
Will find a way to send you the complete address

Anonymous said...

I hope this works. It is OK when previewed.

Anonymous said...

Hi Shin

I actually know a fair bit about Femara from the body building world believe it or not. Femara is the Big Kahoona of Aromatose Inhibitors, there are three that are used most often to control Estrogen in men who use steroids, estrogen production increases with the introduction of Androgenous Testosterone, (lets leave the philosophical discussion about that practice for another time) however it is extremely effective, when other AI's such as Arimidex and Tamoxafin have failed. I cannot for the life of me understand why you cant use Femara (more commonly know as Letrozole in conjunction with the existing chemo you are undergoing as they are doing two totally different things, the Chemo is killing cells while the Femara is blocking Estrogen production.

Hope You are Feeling a bit Better

Best Regards

Sean Wren

Anonymous said...

can i make some comments about a couple of things...

Firstly. the generally negative way in which doctors are spoken of.

i agree with the comment that doctors are only human, but i think i can safely say that not all doctors consider their patients to be guinea pigs, not all doctors are wrong, not all doctors are just out to make money.

i know this because i have been on the receiving end of considerably significant medical treatment in the course of my life (and still more lies ahead for me), including cancer in a family member.

i think when you consider that a lot of the treatments for cancer are so new and even still evolving, one can hardly be critical of the doctors who are trying their best to save/prolong the life/quality of life of a cancer sufferer - especially a young mother like you, Shin.

having said that, i am not defending the style of medical practice which treats a patient like a number, or denies free and clear access to information for the patient and their family, thus keeping them "in the dark", or the doctors whose bed-side manner leaves a lot ot be desired, or indeed those doctors who are just in it for the money.

but can we just avoid blanket statements when it comes to the medical profession in general, because most of my doctors have cared for me greatly, in an ethical and professional manner, and some have even gone the extra mile for me and my family.

enough said.

Secondly. and this point relates to the first...

how can you say to someone "just go with your instincts" when it comes to medical treatments. i think i know what you are trying to say, but simply put, even if you search the web and read all that there is out there to read about certain treatments, you still have to admit that at the end of the day, you are going to have to make the leap of faith, so to speak, and trust your treatment to those with medical degrees and let them "lead you".

good on you Shin for tirelessly finding out all you can about your disease, its treatment, foods that will benefit you and so on. you are truly to be admired for this and for your positive attitude, but i think that you can only "go with your instincts" because you have done exactly all that research, and because of the amazing person that you are.

i hope this has been clear, and not a muddle to read, but i would be very hesitant to tell someone to "just go with their instincts" when it comes to the vast sphere of medicine.

Jin said...

I have a comment about "gut instincts," since it appears to be a recurrent issue here.

I think we need to make the distinction between faith and gut instincts, as they are (in my opinion) two completely different things. I think people tend to mistakenly equate the two.

Again, this is coming from my own background and experience as a psychologist, but our gut instincts are not as blind or uninformed as one might think (unlike faith - again, my personal opinion).

Our gut instincts in fact tend to be based on life experience. Consequently, our gut instincts tend to be quite wise and on target for the most part (I realize I'm speaking in generalities here, but I don't want to get too technical).

To put it simply, as we go through life and therefore experience a wider range of life experiences, we encode information on a subconscious level. Therefore, when we get a "gut feeling" about a particular person or situation, it's actually a feeling that's informed by our life experiences.

It's through such life experiences and the information derived from them that we then pick up on very subtle cues about a person or a situation in the present. Our gut instinct about said person or situation is essentially an assessment or conclusion based on a lifetime of experience which manifests as our "gut instinct."

We tend to think of these gut instincts as uninformed because they're generally instantaneous feelings (which we believe to be the antithesis of logical, rational thought or reasoning), and typically not based on anything concrete or clearly apparent (at least not on a conscious level).

Because what we refer to as "gut feelings" or "instincts" are subconsciously informed by life experience, generally speaking, the more life experience we have under our belts, the wiser our guts tend to be.

On the other hand, a simultaneous, antithetical process tends to take place as we go through life which can work against us. At least in Western and perhaps particularly American society, we're socialized as we mature to increasingly ignore our gut instincts.

We're taught to engage in critical thinking, think things through logically, and if we can't identify any rational "justification" for our gut instincts, to ignore and deny them.

An example of this is when you come across someone who your gut tells you you shouldn't trust, but you talk yourself into trusting them (i.e., "I have no rational reason to distrust this person, I have no concrete example of suspicious behavior on their part, etc.."), only to find that they betray or harm you in the end. In all likelihood, your initial gut instinct about that person was based on a combination of life experience and subtle cues that you encoded subconsciously.

So when we have a "gut instinct" about something, we want to give it our attention, and respect and honor that instinct as coming from a wise part of ourselves that is more well informed than we realize.

That doesn't mean however, that all reason and logic should go out the window either. The two aren't necessarily mutually exclusive. Rather, your gut feelings about something can serve as one of many sources of information (preferably multiple different sources) that we consider in making conclusions and decisions.

To only listen to your gut while ignoring all other sources of information tends to not work out in the end. Because gut instincts are based on life experiences, depending on the nature of one's life experiences, gut instincts have the potential, like any other source of information, to be misguided.

Conversely, to only pay attention to concrete, logical information from external sources and completely disregard what your gut is telling you tends to not work well either.

Having said all that, yes, you want to do all the research, ask the questions, become well informed of the "facts" from the "experts," but you also want to pay attention to the messages your body is telling you. We do know our bodies quite well whether we're aware of it or not. And our bodies speak to us constantly in many ways.

Stress and anxiety are a perfect example. If we live a very stressful lifestyle, our bodies and our "guts" often find a way to let us know. The more we ignore these messages, the worse our situation becomes. The messages can come in the form of anything from tension headaches to GI upset, sleep or appetite disruption, hypertension, depression, panic attacks, or even seizures. The list goes on.

Our bodies might initially whisper. If we ignore it, it might nudge us. If we ignore the nudge we might get a little push. If we ignore the push, we get a shake. If we ignore that, our bodies will find a way to scream in our face, knock us down in a way that demands our attention. You get the idea.

So the bottom line is, do the research, be well informed, but don't ignore your gut instincts either. Consider all the information.

As for the matter of taking a "leap of faith" as far as doctors are concerned, I'll pass on that one, thank you. My personal experience with the medical profession or the field of medicine in general has been that it's not quite the hard, exact science that it's believed to be.

There is some creativity involved and it is in some ways, very much an art form. A person can have all the medical degrees and have all the information in the world, but it's up to each doctor to be able to effectively, and yes, sometimes creatively, consolidate all the information.

Medical test results may be the "facts," but it's up to each doctor to make sense of those facts. And different doctors often come to different conclusions about the same test results, so it's not nearly as clear cut as we would like to think (probably because it feels reassuring to think it is).

Many doctors see things through their own filters (usually determined by their area of specialization) and fail to think outside the box, much to the detriment of their patients.

An example from my own experience, just to make the point: I suffered from debilitating migraines for 14 years and was treated by different neurologists for them, all of whom prescribed multiple medications. Each medication caused significant negative side effects, some quite serious and life threatening. After 14 years of averaging 14 migraines a month, dealing with neurologists and being treated with multiple medications, none of which worked, I went to see an endocrinologist.

The endocrinologist did some blood work, monitored my glucose levels and sent me for a consultation/education session with a nutritionist to go over a strict hypoglycemia diet. The nutritionist in turn educated me quite thoroughly about a strict hypoglycemia diet. As a result of following this particular diet, I've been able to discontinue all of my migraine medications. And as long as I stick to my special diet, I no longer have migraines.

If the neurologists had simply thought outside the box, I wouldn't have had to suffer for 14 years the way I did. To make things worse, my rheumatologist ordered a bone density test because the migraine medications I was prescribed for so many years apparently are known to cause weakening of your bones. The results of my bone density scan showed that I have osteopenia, which means I'm at increased risk for fracture.

So with all due respect to "anonymous," while I understand the point you are making, education does not equal competence or effectiveness, and medicine is not nearly as straightforward as we'd like to think.

I have many other personal examples, but I won't go into them, because I think you get the point. In short, I have to respectfully disagree with the "leap of faith" in doctors of which you speak. No offense intended. Just my personal opinion.

The bottom line is, I agree with Shin's approach to her treatment for the very reasons I've outlined above. So keep fighting sis!

I love you!

Jen Kim said...

Hi Jin and Shin,
I enjoyed that read Jin. Was a dissertation of sorts.. :O)

Jin said...

I know I've already said plenty, but I had an afterthought.

I think we need to remember as patients that even those factors that constitute "the facts" in the medical world (i.e., blood tests) are not always straightforward. We have to consider false positive an false negative rates as well.

For example, it's my understanding (and let me preface this with the caveat that this is not an area of expertise for me) that the blood tests for lymes disease have relatively high false negative rates. So just because you test negative for it does not necessarily mean you don't have it.

I know of cases where the person was tested on multiple occasions and tested negative for it each time, and it wasn't until the third or fourth test that the results finally showed up positive. So again, medicine is not quite the exact science we think it is.

Additionally, among all the different pieces of data that doctors have to integrate is the information we as patients provide them regarding our symptoms and how we experience them, and at times, even our gut instincts. The doctors may be the experts in medicine, but we are the experts of our own bodies.

Ultimately, I think we all owe it to ourselves to listen to our bodies and the messages they send us, to become well informed, ask questions, and express our concerns.

All of us, like Shin, need to advocate for ourselves and become active participants in our own treatments as patients. If we fail to do so, we will indeed end up mere guinea pigs for the doctors.

Another Dr. Seuss style wrap-up for Leigh:

We must realize
Our bodies are wise.
Our guts will speak
So don't be meek.
Total faith in doctors?
I don't think so.
We deserve more than that
So go Shin go!

Love you sis!

Anonymous said...

Dear Jin
You are wise in what you say
But I am also here today
In body, mind and raw opine
And disagree with you
not the sense but
Definitely, for the thought
That we can be a perfect being
Help the Doctors for what they're seeing
Not only due to fact but else
Our gut is telling us what we're feeling.

leighbee said...

Life deals so many cards.............through all the struggles both emotionally and physically in Shins battle, I have been so blessed.........gained several AMAZING friends, Shin, you are sp special to me, then there are the "extended family" know who you are (at least I hope you do?! If not, Ms Cat in the hat, and Chelle in the dell ;-) you are the ones!!!)