"Treatment" has begun!

Well, I have made it through the first Velcade/Dexamethasone treatment.  (It appears the politically correct way is to now refer to it as “treatments” not “chemo”.)  My Naturopath Dr. Gignac had told me that these drugs I’ll be doing are 98% …

One step forward and three steps back

I had a very disappointing check-in with the oncologist this week.  I’ve been really pulling out all the stops these past couple of months with the natural cancer cures (Black Seed Oil protocol – full dose; Dr. Gonazales’ pancreatic enzymes – 20-30/day; and of course the much-discussed ketogenic diet).  I thought for sure my numbers would have come down quite a lot, or at the very least just a smidgen, particularly since I’d been feeling such a whole lot better. 

But no.  Not only did they not go down, they increased by the biggest margin yet, in an even shorter time than usual.  It was quite a shock, that’s for sure.  It looks like drug therapy may be my only option at this point.  I certainly gave it my best shot with all the natural cures.  I’m on over 20 supplements a day, and I really thought this diet change was going to be key.  I didn’t get fully into ketosis other than just a little during the day.  It’s actually quite hard to do.  But my carb intake is very very low now and that’s what I attribute to feeling so much better.  So I guess I will stay on a Paleo type diet indefinitely and not try and do the full ketosis thing for now, just because I enjoy this way of eating and feel so much more energy from it.  (I’m adding two books about this to the book list over on the right, Wheat Belly by Dr. William Davis . . . highly recommended – at last, a nutrition book by a doctor with a sense of humor! . . . and Grain Brain by Dr. David Perlmutter.)

I have a wonderful oncologist, Dr W, and he makes me feel very reassured, that these cells can be wiped out using the various drug combinations they have for myeloma these days.  He says myeloma patients can live a long time now, it is one of the more “treatable” cancers.  So start date for that is January 13th.

Dr. W very kindly explained to me how these myeloma cells have an affinity for each other and like to clump together and get stronger that way, feeding each other the enzymes they need to proliferate, and that at a certain level, the immune system can’t cope with them any more, despite all the natural cures.  He said when they were at a much lower level, these types of protocols can sometimes be useful, but once they get to a certain level, about all we can do is “go for the kill”.  Then once they are down to a more manageable level, perhaps the natural protocols can help the immune system to cope with them a bit better.

We shall see.  Please pray for success, and that I can tolerate these medications.  I’ll talk more about those when the time comes.  Meanwhile, I intend to enjoy the holidays and all the fun things I have planned this month, before we have to get down to business in January.

Back on track

I had a very good check in with my naturopath this week, Mark Gignac (there’s a link to his clinic over on the right, if anyone with cancer is interested in consulting him).  He had seen the article I referred to in my last post by Dr. Gonzalez, a…

Abrupt change of course

I guess it’s time for another update.  I had the second bisphosphonate infusion this week (bone strengthening drug), a different, older drug this time called Aredia.  Very little in the way of side effects, so that’s good.  These will…

My first experience of the chemotherapy room

Time for another blog update, I guess.  I hope this doesn’t go the way of my old journal, which I wrote in furiously for about six months, then abandoned completely for ten years.Anyhow . . . I had the Zometa infusion about ten days ago.  Tha…

Some Woo-Woo stuff

I’ve been reading an interesting book lately, Dying to Be Me, by Anita Moorjani.  She is a young Indian woman living in Hong Kong who got cancer, went into a coma and started to die from it, then somehow made a decision to come back, and her cancer-ridden body was spontaneously healed in a matter of days.  It’s a fascinating account of her experiences on the other side of life and has a lot of insights about healing and what it takes from a psychological/emotional perspective, to get that to happen.

She’s championed by Wayne Dyer, the best-selling self-help author who’s on public TV a lot.  I’m sort of a fan of his, but have only really read a couple of his books; I just like his attitude.  When he was diagnosed with leukemia a few years back I became interested to follow his progress and see if the great Wayne Dyer, Mr. “Manifest Your Destiny” himself, could somehow manage to lick this one.  In my mind I’m sitting there with my arms crossed going “Alright, Wayne, let’s see how you do with the Big One, let’s see how enlightened you are now!”  Then I forgot about it and, having just finished Anita’s book, thought I’d check online to see what had happened to him a couple of years later.  Well, darned if he hasn’t managed to do it.  I was flabbergasted!  (Great word that, flabbergasted — I suppose the UK equivalent would be gobsmacked — but I digress.)  How he healed his leukemia was most unorthodox, using a long-distance psychic healer from Brazil (John of God).  His account of what happened is in an interview on Youtube with Oprah (look it up if you’re interested, I’m not going to link it here because I don’t know that I really champion this John of God or his methods).  It’s a pretty wild story, as is Anita’s.

And before that I had looked briefly through one of the books about attraction which said that what you focus on is what draws itself to you.  If you focus on your lack of healing, your illness/poverty/lousy job etc. exclusively that’s what you are drawing to yourself inadvertently.  So I somehow wonder if Mr. Dyer managed to get rid of his illness not so much through the John of God person as through having the intent of healing, and focusing on health, wellness and just being himself (following his truth, living his bliss, etc, to use the ’80s terminology).

This isn’t actually all that woo-woo, as the Bible recounts many tales of Jesus and the apostles as master healers.  In one story a woman only had to touch Jesus’ garment without his knowing it to be healed.  So the intent, the faith, seems to be paramount here.

So having said that, I’m going to slightly change the title of this blog.  Instead of “Joy’s Journey with Multiple Myeloma” — which reinforces the presence of the illness in my life — I am going to change it for now to . . . well, what you see up above.  But really, it shouldn’t even have Multiple Myeloma in the title at all, as that’s giving it too much power, reinforcing its reality.  This should be about focusing somehow on making my own life whole and happy (as in some of those people who have cured their cancer using laughter therapy), and as related by Moorjani and Dyer, and then supposedly the body just falls in line with that and naturally readjusts itself to a state of health.

Sounds great in theory, let’s see if I can get anywhere in practice!  I have to look into this a little more.  It sounds like so much more fun than endlessly obsessing about supplements, diets, M-spike numbers and ketones.

My life is becoming a series of doctor visits . . .

This has been a busy week of health practitioner visits.  First was a long drive down to Olympia to visit my naturopath, David Lerner (well, he’s not a naturopath, really, more of an acupuncturist/herbalist).  He put me on eleven more things, on top of the 14 I was already on, so now I’m on about 25 different supplements!  I think I am going to start calling him my supplement manager, because that’s what he does, mainly.  But he really knows his stuff, I’m seeing improvement in my sleep and energy already from adding melatonin and DHEA.

Then I met via Skype with Miriam, a nutritionist who specializes in the ketogenic diet for cancer patients.  That’s all she consults on, so she really knows a lot about it.  I definitely need someone to supervise this.  It is going to be even more restrictive than I had initially thought, very limited amounts of protein and calories allowed.  We’re going to ease in slowly, revamping one meal a week, otherwise it’s too big a shock to the system and can mess up your thyroid.  I’ve only just gotten my thyroid sorted out after 27 years of difficulty, so certainly don’t want that to happen.

Then today I saw my endocrinologist for the twice-yearly checkup, and she is thrilled with the way I’ve managed to get my thyroid almost totally sorted out using natural means, after 27 years of being on medication, which I am now off!  The numbers are perfect now and it feels so much better not to be on any form of thyroid med.  I know they say it’s better to take it, but I sort of feel it was part of the problem, rather than the solution.  (What I did:  rub coconut oil into it every day [seriously], and take iodine for the past two years.  Then very very very slowly, over two years, wean down and off the Armour Thyroid.  I also do a little massage maneuver on it daily that I read about in a Donna Eden energy medicine book.) 

She has been wanting to do surgery to remove this thyroid for awhile, and actually can’t believe I’ve done this via natural means and once said she wanted to write a paper on me.  I told her today to hold off until I can figure out how to get rid of the M-spike as well [the myeloma blood protein], and she said then she will write a whole book about me!  She’s just joking, I’m sure — these very traditional doctors can’t believe it when alternative stuff actually works.  Oh, and my “supplement manager” has advised a rather expensive herbal concoction that supports the thyroid, I’m sure that is helping also.

The endo is also very supportive about doing the Zometa infusion (the bone strengthening drug I have to have an IV infusion of soon).  (She has an extremely bubbly and excitable and upbeat personality — I walked in there today feeling sort of depressed for no good reason and kind of bounced out feeling like I could conquer the world.)  So I guess I need to bite the bullet and have that . . . it’s a fine balance between using regular medicine and the natural approaches.  I gather this is completely necessary if I don’t want holes in my bones, which are forming otherwise.  So I’ll post on that when I get it done, in about 10 days time.

Meanwhile, I get to go to the Loreena McKennitt concert outdoors in Seattle this week, as a well deserved R&R from all this medical stuff.  Yay!  She sings like an angel from heaven.

Vegetarians vs. Meat Eating

People keep mentioning Gerson therapy to me.  Below are my reasons for not being interested in doing this right now.

The short reason: 

I don’t like vegetable juice.  It gives me a headache.  Gerson Therapy consists of twelve large glasses of fresh vegetable juice (from a juicer — ever try and clean out a juicer afterwards?) and five coffee enemas a day.  I don’t want to spend my life doing nothing but this all day long. 

The long reason:

I don’t think there’s a one-size-fits-all diet for curing cancer.  While Gerson may work for some people, for others it is possibly even harmful.  Dr. Nicholas Gonzalez is a top alternate cancer specialist in New York who successfully treats all types of cancers using a spectrum of diets from strict vegetarian to primarily heavy meat.  Mercola did a great, very long interview with him, which you can see here:


I’ve been looking at a blog from a woman who also has myeloma, and she did the Gerson therapy for two years, and did not have a very easy time of it.  She then switched to doing Gonzalez’ treatment and diet, and is much happier and making better progress physically.  She has this to say about Dr. Gonzalez’ diet theory: 

“About six months into the Gerson Therapy, I read Suzanne Somers’ book “Knockout – Interviews with Doctors who are Curing Cancer”.  The largest chapter in the book was dedicated to an interview with Dr. Nicholas Gonzalez, a doctor in New York who uses nutritional therapies to treat cancer. 

A couple things stuck out to me when I read the interview.  The first thing I noticed was how effective his treatment is when compared to both the Gerson Therapy and conventional medicine.  Most of Dr. Gonzalez’  patients have incurable cancer and have been sent home to die by their oncologists.  Once on the Gonzalez therapy, the majority of these patients  are outliving the expectations set by their oncologists by several decades.  The second thing I noticed is that he requires that his myeloma patients eat red meat. [emphasis mine] I found this disturbing since I was eating a fruit and vegetable diet and Dr. Gonzalez’ efficacy rates are much higher than Dr. Gerson’s were.  I was immediately concerned that I was on the wrong therapy.

This is a link to her story, she describes her experiences on the Gonzales therapy quite eloquently.  (I’m sort of trying to keep my posts free of excessive links, but it can be nearly impossible sometimes!  We live in the information age, indeed.)


And . . .

Nora Gedgaudas, the author of Primal Body/Primal Mind and a gorgeously healthy advocate of the ketogenic diet, had this to say to me personally in an e-mail when I asked her about Gerson vs. Ketogenic diet for cancer:

“. . . cleansing/detoxifying approach (probably good in the early stages of any cancer therapy), rich in phytonutrients and antioxidants. –But it simply cannot serve to rebuild the body nor supply critical fat-soluble nutrients and active methylators to support long term effective ketosis, liver support and nourishment. This helps explain why raw food vegan diets have so many initial benefits—and are such a disaster long-term. The ORIGINAL Gerson approach, BTW, actually used raw liver as a part of it’s program…which Charlotte Gerson has since eliminated–erroneously opting for the purely vegan-thing and clearly not understanding what her father was really trying to do (note, too, that the Gerson method was much more effective as a therapy under Max Gerson’s more considered approach than his daughter, Charlotte’s). Fat soluble nutrients–particularly preformed animal-source vitamin A–MUST play a vital role in recovery.”

I’ve researched both paths, and when I read Nora’s book everything in me just said yes, this is what I need to be doing.  When I read Charlotte Gerson’s book I couldn’t wait to put it away and never have to think about that again.  The thought of endless juicing (not to mention coffee enemas all day long!) just doesn’t sound like the healing path I need to be on right now.  I actually do coffee enemas already, but only twice a week, and Gonzalez also utilizes them.  But not all day long.

So I am giving this ketogenic diet a good six month trial starting in a couple of weeks.  I intend to starve those little cancer cells of their food (glucose) by following this proven diet for cancer eradication, even if it does contain the supposedly evil (to the Gerson-ites) red meat and high fat.  I’d much rather have bacon and eggs for breakfast than a big glass of veg juice, that’s for sure.  Wish me luck and I’ll report back here what my experiences are with it.  (And the next person to mention Gerson Therapy to me, I’m just going to say “read my blog post” in response!)

I seem totally incapable of making short posts here.  Perhaps I should start putting an abstract at the top!

A note to those with MCS

This post is specifically for folks with MCS (Multiple Chemical Sensitivity).  Aack, as if it wasn’t bad enough to have one diagnosis with “Multiple” in the name, now I have two!  Could I not have something single?  Actually, I do, as Multiple Myeloma starts out as something called MGUS which stands for Monoclonal Gammopathy of Uncertain Significance.  (mono means single)  It is a protein spike in one of the single protein bands in the blood, which indicates excess plasma cells cloning themselves out of control.  It is also known as “simmering or smouldering myeloma”.  The ‘Uncertain Significance’ basically means they don’t have a flippin clue what causes it or how to deal with it.

As you know, we have broken detox pathways or we wouldn’t be dealing with MCS in the first place.  Myeloma is a cancer which is related to toxins in the body.  Please take a moment and watch this little video clip from Dr. Majid Ali, one of my guiding light doctors, about the diagnosis of MGUS.  It is from this that I learned that detoxification is the key to getting rid of myeloma.  (Dr. Ali predicted that a lot of the 9/11 “first responders” would come down with myeloma because of what they got exposed to, and he was right.)


I first found out that I had this precursor condition to myeloma, MGUS, when a doctor was doing routine blood work to search for a cause of the peripheral neuropathy in my feet.  At the time I didn’t take it too terribly seriously as it was yet another thing to be dealt with in the far distant future.  Though it was a bit daunting to be told to go see an oncologist to have it monitored — walking through the doors of the Swedish Cancer Institute for the first time is a sobering experience, even if you’re not dying at the moment.  All they do in the early stages is “watch and wait” and monitor it with a blood test a few times a year, to see if it gets worse.

Well, my advice to anyone reading this with MCS is to find a neurologist or oncologist and get a blood test for MGUS (they will know what this is, and it’s an easy blood test to have done).  If you have any elevation at all, you are in the very early beginning stages of smouldering myeloma and it would be of great importance to address detoxification now.  Do not wait until years later when it has developed into full blown myeloma. 

Do a yearly cleansing regime or two, read Sherry Rogers’ Detoxify or Die and do what she says, adopt some of Dr. Ali’s ideas on detox, do colonics, whatever it takes to clean your system out really well and keep it that way.  Also work on unblocking the methylation pathway, since with a jammed up methylation pathway you can’t detoxify properly — read Amy Yasko or Neil Nathan about this, and find a practitioner who can help.  (This last thing is cutting edge genetic stuff and wasn’t even around ten years ago.)  I truly believe that if I had been addressing detox the whole time I’ve had MCS (19 years now) I wouldn’t be in this situation right now.  I was always waiting for “safe housing” to manifest before beginning any detox.  (Ha!  19 years later, and still waiting on that one.)

This is probably really good advice for everyone else also, to avoid other types of cancer and the inevitable nasty illnesses that result from all the toxicity in our environment these days.  Detox is a huge subject, there’s a lot to learn, and you have to be kind of careful when you have MCS or you can make yourself a lot sicker, since we don’t process it out as easily as most do.  But for me, at least, it’s time to get started on this, and hopefully for you, too.  I’ll be making another post soon about what I’ve done in the natural supplement/detox realm, but that’s a subject for another day.

Love to you all, I’m out to take a walk now (oxygen from exercise is an excellent detoxer!).

Hospital Stays

A couple of people have asked about my hospital stays, so here are the gory details on that, if you’re interested in that sort of thing.  Otherwise, no need to read this post!The first was in the summer of 2011, when I noticed increasing discomfor…