Friday, October 13, 2017

Well, that was over before it started

Unfortunately, I have had to quit the CBD oil, after just two weeks.  I had great hopes that this was going to get and keep remission going for me, as I have seen a number of anecdotal reports that it has helped put myeloma patients into remission.  However, it quickly exacerbated a low pressure situation in my eye.  I had forgotten completely that cannabis taken regularly can be used to treat glaucoma (high eye pressure).  After having developed that from four severe uveitis flareups almost fifteen years ago now, I had glaucoma surgery ten years ago, then a second surgery three years later to correct low pressure from the surgery.  Low pressure is equally as harmful to vision as high pressure.  The pressure has been holding at low-normal ever since.  This is the first time it has dropped down again, which was kind of scary.  The ophthalmologist said I might need another surgery if it didn't come back up.  I had taken a dropper full of the CBD just before going into the ophthalmologist’s to have the pressure checked.  Duh!  No more CBD, and will re-check pressure in a month.  It’s possible it could be going low on its own, but I doubt it, it was normal two months before that.

The good news is that my M-spike came down even further this past month, to an almost negligible 0.1 from 0.2 the previous month.  The Holy Grail of remission is within sight!  I have no idea if two weeks of CBD oil helped with that, but I sort of think it did.  So anyone who reads this with myeloma who does not have low eye pressure, I think I could recommend the CBD oil to help keep numbers down.  Man, it was wonderful for mood and depression, you feel really good on it in an undefinable sort of way.  It felt very nourishing to all aspects of my body.  There was no THC in it, so it wasn’t like being stoned, just a very mellow, positive sort of feeling and it sure did help with sleep also.  I’m very disappointed I can’t continue with this.

However, there are other things to try.  Transfer Factor, an immune system support, will be added to Honokiol and Reishi mushroom extract now, as the main immune supporting anti-myeloma supplements.  My old oncologist, Dr W, was a fan of Transfer Factor, so am encouraged to try that next.  Watch this space.

And of course will continue with the Darzalex once a month for as long as the doctors recommend that.  I’m still doing 1mg of Pomalyst for 21 days each month but am going to see if I can space that out to every other day, and then drop it completely.  I need a break from drugs!

And . . . I’m thinking of transferring to Seattle Cancer Care Alliance for my oncology care, where a lot of the latest research is going on.  I feel very blessed to have this world class institution available here, so close by.  (And the Medicare insurance to cover it — all people should have this — I’m an advocate of single payer health insurance for this country, so everyone can be equally as well taken care of.)  The doctor I chose there is doing research on radioimmunology, where a tiny dose of radiation is delivered to the myeloma cells only, and I think this is very interesting.  So if myeloma comes back, I would like to try that in the future, if I’m a candidate.  We shall see.  Meanwhile, I need to build back up some strength to enjoy this remission for as long as it can last.  Love to all. 

Thursday, September 14, 2017

Back from the edge of the cliff


Six months into the Darzalex/Pomalyst/Dex regimen, things are looking good.  My M-spike numbers are down to 0.2 now, which is the lowest it’s ever been since this has been tracked, starting in 2004.  That’s so close to remission I can see it on the horizon.  (or more like around the corner)

I really want to stop the Pomalyst (21 days a month), though Dr B would have me on it indefinitely I think, as a maintenance plan.  But I have my own plans about how to get off it, see next paragraph.  I really don’t want to do a toxic drug on an ongoing monthly basis as maintenance.

So I am starting a custom treatment plan from a doctor in Portland who knows how to work with cannabis oils for cancer (Christian Lé M.D. at Green Earth Medicine).  If this is tolerable, I want to keep up with it and have that work on the immune system, along with the Reishi mushrooms a cancer-literate naturopath recommended, and also Magnolia Bark/ Honokiol, another cancer ND recommendation.  These two, along with curcumin, have studies showing their effectiveness against myeloma cells.  That’s MY remission plan!  And to keep up the monthly Darzalex infusions.  But Pomalyst has got to go!  It’s making my hair fall out, causing fatigue and bruising, as it pulls down the red blood cell count along with wiping out the myeloma cells.  It is time to heal my system from the ravages of these drugs, which have saved my life over the last six months.  But now the time has come to regroup and rebuild.

I feel like I’ve been given my life back, once again, from “the edge of a cliff” as my doctor put it.

I’ll report more soon on the effects of this CBD oil and if/how it has worked for me.  There is no psychoactive effect from it, as the THC has been removed, it is just cannabinoids.  Of which there are several hundred, most unstudied, according to this very knowledgeable doctor, who specializes in this exclusively.  He can tailor the formula to fit one’s specific cancer.  It doesn’t taste very good, and sometimes I rub it onto my skin instead, which makes me smell like a pot plant!  Or one of those guys who smoke so much weed it’s in their clothes and hair and they reek of it.  It’s not that bad, though.  Welcome to the world of medical marijuana, Joy!

Wednesday, May 10, 2017

Update one year later


It has been a whole year since I put up a blog post!  A lot has happened on the health front.

After about two months of relative stability following the last chemo regimen, my numbers again started to climb, and at the beginning of this year, 2017, quite dramatically.  At first I was looking for causes for this:  Was it too much stress?  Did I get too much toxic exposure?  What have I done wrong?  Am I eating the wrong things?  But this is just the nature of Multiple Myeloma, it sits quiet for a while then regroups and can come back with a vengeance in its own time.  This appears to be what happened.   Especially since none of the previous treatments I’ve done have gotten rid of it completely, there was always something left there ready to re-grow and take over again.  It's like living with a ticking time bomb in your bones.

Hence it was time for another round of major chemotherapy treatment.

So, medical details below, you can skip this part if not interested in the drugs, etc.

I have a new oncologist now, a myeloma specialist, Dr. Bensinger at Swedish Cancer Institute in Seattle, and he is overseeing my taking the immunotherapy drug Darzalex, which I’ve wanted to do ever since first hearing about it.  This is something that tells your own immune system to target a specific protein on the myeloma cells only, rather than using a drug to do the job.  It’s a five or six hour IV infusion once a week for eight weeks, then every two weeks for eight weeks, then once a month until six months is up.  It gets easier and shorter as time goes by.  The first one was a real bear with some very weird side effects, but they say that is to be expected for most people.

Dr B believes in the “three-drug-combo” as being much more effective than the Darzalex alone (85 or 90% chance of remission compared to only 33% if Darzalex is used alone), so I am also doing a rather strong thalidomide-derived chemo drug called Pomalyst with it, along with the dreaded Dexamethasone steroid once a week (kind of a booster for the other two). The side effects of this Dex are like a roller coaster and take a full four days to wear off, leaving only a short time each week to feel like a "normal" person before you start the process all over again.  Whoever invented it obviously never had to take it, and it seems to be a feature of all myeloma chemo regimens; the doctors love it because it makes things work better.

All this has me quite wiped out with very little energy and stamina, because the Pomalyst has dragged down my WBC and RBC counts to a dangerously low level.  This has required two blood transfusions and strict instructions not to go out into crowds or anywhere there’s too many people, lest I catch an infection.  So I’ve been in a kind of quarantine at home for a month or so now.  I’ve been pretty weak and shaky from the anemia, so don’t want to go out much and do things anyway.  Just one of those times to be got through knowing there are better things ahead.

But . . .  the good news is . . .

The “three drug combo” (sounds like a McDonald’s meal), and especially this immunotherapy Darzalex, is working extremely well for me.  Both the doctor and his assistant were thrilled when they saw the drop in my numbers and said I am having a fantastic result!  So this will all be worth it when it’s over and it pretty much looks like I could be headed for that promised land called REMISSION.

Some people are lucky, they do a short spell of chemo when first diagnosed, get into remission quickly and stay there for years and years.  (I know two such people.)  I have not been one of those lucky ones, my disease seems to keep returning with regularity (this will be the third major chemo round for me).  But if we can get these cells completely under control, something the other two plain drug regimens did not do, it will be a lot easier to keep it that way.  At least that is the plan.  These new immunotherapy drugs can work wonders.  They have made great strides in developing these for myeloma in the past few years, and even more and better ones are in the works.  I’m very grateful to have the opportunity to do this and the insurance to pay for it.

I have my ideas of what natural treatments I want to do to bring strength and wholeness back to my body after this intense drug induced “time out” from what used to be my life, and keep remission, but that’s another post!

Once again, a big “Thank You” to my sister for driving me every week to the Swedish Cancer Center for the infusions.  Couldn’t have done it without you!

Oh, and I’m enjoying reading a book by Toni Bernhard called How to Be Sick.  I know that’s a terrible title, but it’s a Buddhist-oriented take on how to deal with chronic illness and contains much wisdom and inspiration to learn acceptance and joy even in the most trying of circumstances.  I recommend her books.

Tuesday, April 26, 2016

Ups and Downs


Quite a lot has happened since the last update, both good and bad. . . .

First, the good:  As I mentioned in the previous blog post, I started chemotherapy last September 1st, and was put on first the Kyprolis/Dex for four months (an IV infusion over two days a week), and now am on a simpler regimen of Revlimid/Dex (a daily pill, 21 days a month).  This heavy hitting drug regimen has had the effect of reducing the myeloma numbers to almost zero!!  My numbers have not been this low since before tracking them began back in 2005.  So for this I am very grateful and somewhat amazed, as I never quite thought this could happen for me, remissions were what other people got.  All I ever did was watch my numbers slowly creep up as the years went by.

Side effects have been there, but really not too terribly bad a price to pay to watch my numbers drop and feel no more discomfort in my bones.  My hair did NOT fall out (yay!!!), but I’m pretty tired most of the time, the white blood cell count being very low due to Revlimid.  And there's been some "chemo brain" on bad days, when I don't know whether I'm coming or going.  But that’s about it, really.  I get a seven day break from the Rev each month and by the end of that the energy starts to return and I start to feel more like my old self, so I know this is a temporary thing.  I’m hoping to go off it all soon, once this final stretch is complete.

Rather than seeing these chemo drugs as the enemy, nasty things full of toxic chemicals, I’ve tried to view them as the agents of my healing, and indeed they have been.  They have brought me back from the brink of the abyss last year, and therefore I am very grateful to them.  And of course my good doctors who are making a fortune prescribing them.  It’s astonishing how expensive they are, and I thank God for good insurance coverage, and the wonderful charity The Leukemia & Lymphoma Society, which pays my drug co-pays (I had a $7,000 co-pay bill for three months of Kyprolis last year!!)  (Twenty-one pills of Revlimid cost $10,000 — people go bankrupt trying to pay for that drug.)

The not-so-good:  Last winter a tumor had developed on my left shoulder joint (called a plasmacytoma).  It had been hurting for some months and I thought I just had bursitis or something, so neglected to have it looked into.  I am learning that if there’s any unexplained pain that doesn’t go away and only gets worse – get it checked out properly with x-rays and/or MRI.  This caused the shoulder joint to break quite severely when I put pressure on it trying to get up from the floor (me and floors don’t get along).  So I spent three weeks in hospital having radiation treatments to take care of that tumor, with my arm in a sling, unable to move it.  And after that, three weeks in a rehab center (also known as an alternate universe) hanging out with the Alzheimer’s patients.  Still with the arm in a sling and unable to move it. 

Do you want to know the absolute worst thing about being in hospitals and rehab centers?  Not being able to take a proper shower every day and wash your hair!  The little Vietnamese lady at the rehab center, Mai, who gave people showers that felt like being in a car wash, was one of the more interesting things about this whole experience.  (The rehab place thought a shower once or twice a week was all people needed — arrgghh!!  And in the hospital you can just forget it altogether.)  During this time I was heavily medicated on oxycodone every day, the same opioid drug all the news headlines are talking about as causing such an addiction problem.  Every four hours they'd give me another one, even during the night.  Gradually, as the pain lessened in the arm, I was able to wean myself off this highly addictive drug, but it took about three months.  It wasn’t until the last pill ran out on the prescription and I had told the doctors not to renew it, since I actually didn’t need it any more, that I was finally able to stop.

It’s been five months now since the break and the arm is back to about 2/3 of it’s previous ability, thanks to twice weekly physical therapy and just time.  The osteopath said it would be a “frustratingly long” recovery time, and he wasn’t wrong.  I feel like I’ve been in the strangest limbo.  Not being able to take care of yourself is a major thing, and it’s only been a month since I started driving again and living back on my own, doing all the shopping, carrying the grocery bags, cooking, etc.  All the while still on chemo.  But it’s starting to feel like my old life is returning, just rather slowly.  I’ve left the crushing heat of Arizona and am getting resettled back in the Seattle area, also a slow process.

I would like to say a word of thanks to some of the people who helped me the most during this past year:  Steve Ross, indefatigable driver and reader of good stories; my sister Terri, wonderful cook and shopper; Irene Haitsma, finder of great apartments and mover of large boxes, and my long time friends Richard & Susan, Amy, Linda, Tové and Sylvia, for exceptional emotional support and good Indian lunches.  And of course my incredible mother, whose love and support and spiritual inspiration never wavers.  Where would I be without you all.

None of us knows the twists and turns life can take (I was tempted to add “breaks” into that phrase, but will avoid the bad pun).  People often comment they think I am very “strong” to be able to put up with all this.  You just go with what is being given to you at the moment, trusting in God and His wisdom for your life, and know that nothing lasts forever, everything changes, usually by the minute.  If you hit the rapids now and again, I know that there is a peaceful eddy just around the corner.

The odd thing is that I find these episodes of extreme situations easier to cope with than when things get back to more “normal”.  I’m not sure why that is, but in situations like that you really have no choice but to let go and surrender to whatever’s happening.  It’s day-to-day life that proves more of a challenge, because I think I have to figure it out and make things happen myself.  The only thing I really need to figure out is how to carry that feeling of grace and being cared for over into everyday situations, the old “let go and let God” advice.

Okay, time to stop rambling.  If you’ve read this far, God bless you and I hope you have a peaceful day enjoying the lovely spring which is upon us this year.  Hopefully more good news will be following in the next blog post, whenever that may be.  And I’m not getting up off any more floors any time soon.  

Thursday, October 15, 2015

The turnaround


Just a short update here.  The twice weekly Kyprolis/Dex IV infusion treatments are going pretty well and bringing the myeloma under control, that’s the main thing.  The kidneys are slowly coming back to normal from their near shut-down due to excess myeloma cells, and I’m able to drink water a little better now, though still not enough.  The nausea and throwing up has finally stopped (thank God!!), that was getting really scary there for a few weeks, could hardly keep any food or even water down.  Sometimes even one sip of water would send me to the toilet vomiting.  The kidneys are very important!

So the appetite is returning to normal, and I’m weaning myself all the junk food I had to eat to get through that episode . . . for some reason all I wanted to eat was potato chips, oranges and chocolate milk!  Well, I’m discovering electrolyte replacement drinks are giving me the postassium and other minerals I need to get off those things, so have been experimenting with various ones of those, coconut water, etc., to get rehydrated after the weeks of vomiting.  So every day I take one of those, and am slowly taking a few more basic vitamin supplements as well.  But only a fraction of what I was taking before, I cannot overload my system with excess supplements right now.  Healthy food is finally starting to taste better than junk food, tho still can barely look at a vegetable.

Unfortunately, my hair is starting to seriously thin out from the treatments, and this has been more upsetting to me than just about anything, not knowing if it’s going to go all the way or what.  So am getting scarves and a hat, just in case.  It will grow back once the treatments stop, it did last year after I stopped five months of the Velcade.  Vanity trumps all, it would seem.

But at least things are on the improvement.  The oncologist said I had a “lucky escape” this time but personally I feel it was the prayer of everyone who has prayed for me to pull through this episode, not blind luck, that has helped turn things around.  That, and the ultra-expensive drug I’m getting pumped into me every week.  So thank you all for your prayers, and please continue to keep it up thru these chemo treatments until remission and there is no more myeloma blog here. . . .   Love to you all.

Saturday, September 12, 2015

The summer from hell


Lots has happened since the last update.  First of all, a HUGE THANK YOU to all those who contributed to my health care costs via the GoFundMe campaign and the Holistic Healing Foundation.  I have such wonderful friends and family, such a blessing you all are.

Okay, here’s the long and rambling story . . .  In late June, I went onto Velcade again for five weeks, which was not a success (see below post).  Shortly after I started it I contracted pneumonia from Valley Fever and it has been a long, slow recovery from that, during the hot hot summer here in Arizona. Valley Fever is a fungal infection specific to the Southwest desert regions and is transmitted from blowing spores through the wind.  Trust me to come down here to this good-air environment and catch that stupid thing.  They say most people take about 6 weeks to get over it, but for someone with a compromised immune system it can be a major disaster and take much longer.  So I have been resting a lot and am trying to take it easy and haven’t been able to do my daily outdoor walks due to the heat and just being run down.  I’ve even gone off all my supplements, as they just are not tolerable any longer.  (and sometimes I think I feel the better for it!)  The first month with Valley Fever was very rough, with fever, sweats, nausea and extreme fatigue my daily companions.

Having gone off the Velcade, when I went to check in with the oncologist earlier in September, my myeloma numbers had shot up considerably, so he now wants to start a three drug combo which are the heavy hitters (Revlimid/Dex/Krypolis), supposedly very effective against myeloma in this combination.  I was all set to begin this, and even had the very expensive Revlimid prescription Fed-Ex’d to the front door ($13,000 for a 21 day supply!  Fortunately my co-pay was $6.16, but some people are having to pay that!).   But I was so run down from the Valley Fever, that I was afraid to start.  I went to consult the naturopath and he didn’t think I was strong enough either, and that it could be dangerous to depress my immune system again, as the fungal infection could then go out of control. So we were trying to get this infection and the pneumonia under control before hitting my system with heavy chemo drugs, by using high dose Vitamin C infusions again and, when I was strong enough to handle it, an anti-fungal drug (hard on the kidneys/liver). 

I do believe what happened with the Velcade is that it depressed my immune system to such an extent that the Valley Fever set in.  The fever is now gone, but the nausea is still with me almost two months later, as well as being very weak from it all.  I also got very dehydrated over the summer.  The only upside to any of this is that I have lost about 20 lbs. since food looks like a foreign substance to me at times, and am at a weight I haven’t seen for 25 years!  But this really isn’t the best way to lose weight.  Some of it is now coming back as all I really want to eat is sweet stuff, saltine crackers & ginger ale, iced juices etc.  Too many carbs, but vegetables make me queasy to even think of them most of the time.

So I’ve kind of felt stuck between a rock and a hard place:  if I don’t start chemo the myeloma is taking over, and if I do, the V. Fever could cause more havoc.

An update to the above (written a couple weeks ago but not posted yet) is that my kidneys started to fail due to dehydration and excess myeloma cells, which have really shot up in number since all this began.  (so much for Velcade)  My oncologist basically laid it on the line for me and said unless these myeloma numbers get under control, nothing else is going to have any effect, and the time for natural treatments is passed.  It’s drugs or face the consequences right now, so I don’t feel I have any choice but to go back on what he’s recommending.  I had been trying to hold on for the antibody therapies to become available in six months’ time, but he said I do not have that much time to wait untreated.  So had the first two infusions this week (minus the Revlimid, thank God, that expensive beast sits on the shelf – I could sell it and buy a car for what it costs!).  So I am in recovery from that at the moment, it has really shaken my system up, and it’s administered over a two-day IV infusion.  Tuesday/Wednesday are treatment days.  I must say the Univ. of Arizona Cancer Center have been very good and have an excellent facility if you're doing this drug route.

So, not the prettiest picture at the moment, it has certainly not been an easy summer.   Sorry for rambling on here, I’m just trying to explain a complicated situation.  Hopefully by the next time I write things will be a lot better.  The Krypolis/Dex alone should help the myeloma get under control, it’s just a matter of riding out the side effects and praying for Valley Fever to keep at bay and not flare up again.  Will try and post more updates as time goes by, sorry for not saying much lately, but I’d been so tired from it all it was hard to explain it while in the middle of the storm.

Love to you all who have taken the time to read all this.
Joy


Friday, June 26, 2015

Back on Velcade



Well, another round of chemo has begun.  The myeloma made a slow but steady comeback, so, a year almost to the day that I stopped the last Velcade treatment, I’m back on it.  There will be some changes this time, though.  The doctors love the “three drug cocktail” (Velcade + Revlimid + Dexamethasone, a strong steroid).  They say it works synergistically to enhance the Velcade.  I had such a hard time with the Dex last time, it was very intense and crazy, so this time I have elected not to take it, or the Revlimid, which can cause a detached retina.  Those of you who know me well know what I’ve been through with eye inflammation (uveitis) and I am not risking any damage to my eyes from this.

What I am taking instead are several synergistic agents which are natural, at the direction of my naturopath.  He told me there are actual studies to show these work to enhance the effectiveness of Velcade.  (What they are:  Curcumin, Wobenzym pancreatic enzymes, L-Carnitine, PectaSol citrus pectin and magnolia bark.)  I’m going to see how these work this time, instead of the Dr Jekyll/Mr Hyde crazy-making Dex, that was an absolute nightmare of a drug (jittery, insomnia, unreasonable anger and intense emotions – for days and days).  That first round of Velcade/Dex last year only brought my m-spike numbers down by half, so I didn’t get anywhere near remission.  This time I figure I haven’t got much to lose by trying these other substances with it instead.  

I’ll try and keep up more of an update here so people can know if this natural supportive regime works as well, or better, than the heavy drug regime.

Thursday, April 16, 2015

Vitamin C and clean desert air!


Profound apologies for not updating my blog recently (if anybody’s even listening!).  I’m doing okay, despite climbing M-spike numbers.  It appears that five months of chemo drugs last year didn’t really do much to halt the progression of myeloma for me.  I may have to do another round, but am trying to hold out for the antibody therapies which will be available in a year or so, and are much less toxic.  These basically teach your immune system to find and destroy the cancer cells, like it’s supposed to do in the first place, and are far less damaging to the body than the drugs.  There are some great results coming out from the clinical trials and both my oncologists are excited about this line of treatment – coming soon!

Meanwhile . . .  I have found a wonderful oncological naturopath to work with down in Arizona, Michael Uzick.  A link to his website and clinic is over on the right.  He has been giving me high dose Vitamin C IV infusions twice a week for several months now (50g at a time!), and put me on some interesting immune supporting supplements, such as a mushroom complex (AHCC) and a cancer fighting mineral (germanium), as well as pancreatic enzymes.  Other immune helpers he has me on are magnolia bark and low-dose Naltrexone (google it, this is a drug which helps auto-immune conditions and has put people into remission from cancer just on its own).  Interesting – but expensive! – stuff.

The good news is that all of the above has HALTED the progression of the myeloma in my system.  We haven’t quite started to reverse it yet, but just putting the brakes on it in a natural way is a major step forward.  I tried so many things on my own (see all the previous posts), but without professional guidance, none of it came to much.  But with Michael Uzick’s help, things are really starting to turn around.

I’ve also been staying with an old friend in a very pristine, clean-air house and environment here in Arizona, which has aided in my healing.  The air quality out in this high desert is awesome . . . but must watch out for the rattlesnakes and scorpions!

So that’s the update on the medical front for now.  I promise to post more regularly as to the outcome of Michael’s regimen.

And lastly . . .

I am having trouble affording all of the above (it’s running at well over $1,000 a month), so there is a little charity where people can make donations towards alternative health care costs for myeloma in a tax-deductible way.  If you would like to help me with these costs, in even a small way, please take a look, and donate if possible — I would be so grateful.  (On this website, there is a place on the second page of the PayPal donation form, and also on the mail in form, where you can put my name.)

Love and blessings,
Joy

Thursday, July 24, 2014

Just Checking In . . .

I have been ignoring the blog lately . . . sorry.  Sometimes you just don’t feel like talkin' about it, ya know?

Anyhow, I got through five months of weekly Velcade/Dexamethasone, what a roller coaster ride that was.  That Dex is a humdinger of a drug, it really turns you into an entirely different beast.  I’m finally starting to feel like myself again, after five weeks off it.  The drugs brought the M-spike numbers back down into the MGUS range (yay!) but they are not as far down as Dr W and I would have liked.  Some people get complete remission on this combo in just a couple months, but I guess that was not to be me.  After one month off, he re-checked the M-spike numbers and they had gone from 2.3 back up to 2.6, so close monitoring is going to be needed here.  I’ll see him every six weeks for that, and a Zometa infusion.

Meanwhile, life goes on as best it can.  I’m grateful for what functioning I do have, though have been very tired lately.  I got a far-infrared sauna (www.therasage.com) and have been using that a few times a week, but it makes me feel very tired, sometimes for days afterwards.  So I might have to back off using that quite as often, perhaps once or twice a week instead of three or four times.  Sometimes you can overload your system with too much “detox”, especially if the detox pathways are broken (as is the case with MCS).  An interesting article on the Therasage website tells how/why heat therapy is useful for cancer:  http://therasage.com/blog/cancer-therapy/

My next tactic is to start using Essiac tea on a daily basis.  It’s an ancient Native American recipe known to cure various cancers.  I ran this by Dr. W, who has a very open mind about all things alternative, while maintaining his bemused, skeptical AMA-doctor attitude.  He actually said some of his other patients have had a good response to it, so he was in favor of it.  It’s not difficult or expensive to do, so that is my latest thing to try now that the drugs are done.  Took the very first dose this morning!  It’s supposedly an excellent blood and liver cleanser, so that can’t be a bad thing.  This was recommended to me by someone who has had a 15 year remission from MM using this exclusively.  (Thank you CH!!!!)  I’ll let you all know how I get on with it.

Sunday, February 23, 2014

Onward through the fog . . .

Well, I have been through over a month now of the Velcade/Dexamethasone regimen, and seem to be surviving it alright.  It's an interesting pattern, the Dex is a pretty powerful steroid and has stimulant properties and I didn't think I'd be able to handle that at first, since I am very caffeine sensitive.  But I seem to be able to sleep alright on it, whereas a lot of people don't.  For which I am very grateful.  But it sure turns me into a hyperactive, emotional mess the next day.  Everything is just way more intense and I rush around like a mad person from thing to thing, accomplishing very little.  Then by Day 3, like the werewolf reverting back to a human being in those old horror films, normal-ness begins to take over again, the fangs and fur melt away quickly.  So I'm having about four days of normal functioning and three days of roller coaster ride, but it's a small price to pay to wipe this myeloma out of my system.

And it does seem to be working according to the Dr.  My numbers are responding, there was a 20% drop in the M-spike in the first month alone, which he considers a good response, so I'm pleased.  I sometimes feel like I've entered a strange, alternate universe with a small light at the end of the tunnel, but at least there's a light.  I sat next to one poor fellow (much younger than me) in the chemo room the other day who had had every single combination of every myeloma drug and none of them had worked on him.  I felt so bad for him, and equally grateful that my situation is not that dire, and hopefully will not be.

Most people really don't have a clue about diet or supplements, though, and I do think a lot of the things I do in that regard are helping.  Neuropathy is one of the main side effects of the Velcade, and I did have a couple of very nasty experiences with it at the beginning.  So bad that I was afraid I wouldn't be able to continue, as has happened with others.  So I decided to go on the attack against that as I didn't want it to derail the whole regimen; I've dealt with peripheral neuropathy for a good 15 years now (no doubt caused by the growing myeloma situation, without my knowing it), and have a number of little things I can do to make it better, which seem to be working.  Doubling up on B Vitamins on the Velcade days is one of them, and doing a hot foot soak with epsom salts and hydrogen peroxide that very night is another (those pull toxins out).  Those two things alone have made the neuropathy no worse than usual, or at least very tolerable.  And of course staying strictly gluten free is the number one thing to control neuropathy in my case, if anyone reading this has this problem.  Without that, it would be hell.

Okay, that's probably way TMI, so that's enough for now.  Onward through the fog, as I like to say . . .

Wednesday, January 15, 2014

"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% better than the other more toxic chemo drugs, as they are targeted agents, which means they only go after the myeloma cells, not my entire immune system.  But still . . . man, they're potent!  Totally wiped me out for two days.  But I'm feeling almost back to normal again today.

Dr. W, my oncologist, is wonderful, he knows just what to say, and he was very reassuring that I will be on this "treatment" until it brings my numbers back to zero or close to it and they are stable.  He said it would then probably take some years for things to build back up to where treatment was again needed, and by then even better treatments will be available, as they are making great strides all the time in myeloma cures.  So that was very reassuring.  So I just have to get through this cycle of treatments, however long it may last, and hopefully things will be a lot better for a long time.

Meanwhile, in order to clear out some of these toxins from my system, I found a page of detox soup recipes and am going to do one per week.  Plus the usual epsom salt baths, coffee enemas, smoothies, herbs, etc.  And I want to get a sauna!  More about that later.

I've ignored the blog of late, will try and post here a little more as "treatment" progresses.  Pray for success, please!

Tuesday, December 3, 2013

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.

Saturday, October 19, 2013

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, and he spent some time explaining to me how and why Gonzalez was wrong on this subject.  Dr. Gignac is a big proponent of the ketogenic diet, and is actually on it himself I think, so he was enthusiastically encouraging me to continue with it. 

So I am thrilled to be back on it, as it really is making me feel so much better, if nothing else.  It's amazing what giving up grains can do for your brain!  (There is a good book called Grain Brain which I can't wait to read next.  Wheat Belly is also highly recommended.)  Now hopefully if I can just get this good clean feeling transferred to my bone marrow, we'll be in business.

Dr. G actually gave me about eight youtube links to doctors and researchers speaking about the usefulness of the keto diet for cancer, some quiet lengthy, which I can send to anyone who might be interested (just request it in a comment below).

I am also instituting Dr. Gonzalez' main enzyme therapy (pancreatic enzymes in high doses), since you can buy his enzymes online and don't have to visit his clinic in New York to get them.  I'm not quite taking the huge amounts he would have one take, but almost half (28 of them a day!).

So between these two heavy hitting anti-cancer therapies, PLUS the Black Seed Oil protocol, if my numbers don't start to come down I'll be absolutely amazed.  In which case I will just have to abandon myself to drug therapy. 

I was feeling quite depressed at the idea of having to give up this keto diet, since I had put so much emotional and physical energy into getting it going.  So now I feel really excited about both the enzymes and the diet, and am so grateful for the trusted guidance of Dr. G, who sees cancer patients all day every day, and really is up on a lot of stuff. 

Friday, October 11, 2013

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 continue ongoing, once every four or five weeks for probably two years.

But it's been a tumultuous few days, as I discovered from a source I really respect (Dr. Nicholas Gonzalez) that the ketogenic diet I was pinning all my hopes on for chasing away the myeloma, really doesn't work as a cancer cure.  It was like a bucket of cold water over my head.  I feel like I got on a train heading one direction and picking up a good speed and then it just slammed on the brakes and had to reverse course.  I had put SO much energy and planning into that diet, and was 2/3 onto it.  It isn't easy to change your food around.

Here is a link to Dr. Gonzalez talking about it, and his article.  Darn.  (well my first reaaction was more like s***, but I'm too polite to say that here) 

One good thing that did come out of that experiment, however, was how much I like eating low-carb.  You feel so much more energy and clear headed, and my blood glucose came down about 10 points to a really good number, so anyone with blood sugar issues, take note.  Paleo is the way to go and I will hopefully be sticking as closely to that way of eating as possible (not as strict as ketogenic, but still low carb, slightly higher protein).  Dr. Gonzalez also recommends myeloma patients should eat more meat, not less, so that fits well with the Paleo way of eating.

So in a matter of a very few days I've had to come to the realization that it's most likely drug therapies for me in the very near future.  Having read SO many books about the dangers of chemotherapy and the benefits of natural treatments, this is hard for me to get my thinking around, that this is now the thing that will ultimately cure me.  The myeloma drugs aren't considered chemo per se, so that's one good thing, at least.  I don't have to associate them with the "evil" chemotherapy.  [apologies to anyone who has been helped by chemo drugs]  And everyone who has done them and come out the other side (complete remission) as well as my doctor, says it is very important to tackle this beast early rather than letting it get out of control.  Which it is starting to do for me.

Between now and the next blood draw (not for six more weeks) I'm trying a "hail Mary" pass of a last couple of natural therapies:  Dr. Gonzalez' pancreatic enzymes in the high amounts he prescribes for all his patients, as well as the Black Seed Oil cancer protocol.  If those have any effect whatsoever, we may have to recalculate course yet again and continue that path, but it's looking increasingly likely that the myeloma drugs will be in my future.

I had a very encouraging talk with a friend of an old friend in Miami who also has/d myeloma, and she went the drug route at first (taking Thalidomide to wipe it out, believe it or not), and she said you basically have to use the best of both worlds.  Tackle it quickly using the heavy drugs, then use the natural therapies to build yourself back up and keep it at bay.  She has been in Complete Remission (the gold prize) for over 14 years now.  So it looks like that, for now, will be the plan.  Unless there is some miracle with the enzymes and Black Seed Oil.

Sunday, September 1, 2013

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.  That's the bone strengthening drug my oncologist is recommending I have once a month for a couple years.  Otherwise the bones are starting to get holes in them (literally), and this can heal the holes and prevent future ones.  It's something they also give for osteoporosis, only it's done more intensively here, as an IV infusion once a month, a high dose.  So I read up about this a whole bunch, and asked all the folks on the Myeloma page on Facebook their experiences, which were mostly positive.  There can be some very rare very nasty side effects, but overall, it's worth the risk not to have my bones spontaneously fracturing from holes in them.

I thought I'd gotten off easily with regards any immediate side effects as I felt mostly fine that evening, but boy the next day it was like I had the worst of flu's, could barely get out of bed, and was running a temperature all day long.  But by the following day I was almost back to normal.  So I'll see Dr. W in a few weeks and discuss progress, schedule the next one etc.

What was weird about it though was this infusion was done in the chemotherapy room at the oncologist's office, along with the other folks having chemo that day.  It was kind of an interesting atmosphere, some people only wanted to read and listen to their headsets (the chemo infusions can last quite a few hours), but others were into talking, so it was kind of a party atmosphere in a way. 

So I'm sitting there reading Wheat Belly, a book about the dangers of modern wheat, and this lovely volunteer is going around to the folks in the chairs passing out snacks, which are either cookies or candy.  I just cannot BELIEVE they would be feeding people sugar as they are having chemotherapy!?  I mean, WHAT is that about?  Everyone knows that cancer feeds on sugar, so they are literally feeding it with one hand and killing it with the other.  This doctor's office is so clueless  about diet sometimes that it amazes me.  They also have a big jar of hard candy in their reception area, more than one actually, and I mentioned that to them once, that perhaps this wasn't the best thing to be having around people with cancer, and they just said people's mouths get dry.  At the very least, they could have sugar free candies, and pass out some sort of snack that has no sugar, such as packaged nuts or something?  What about some nice fresh raw carrot and celery sticks?  Surely that wouldn't be too hard for the volunteer to arrange?  The level of ignorance when it comes to diet in a normal medical establishment is truly astounding.

Either that or they do know and just don't care because it keeps up the profits to keep giving people chemo, which would be creepy and evil beyond belief.  Suffice it to say I will be foregoing the jelly bellies during future infusions.  The phasing in of the keto diet is going okay, I'll post about that later.

Sunday, August 18, 2013

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.

Monday, August 12, 2013

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.

Thursday, August 1, 2013

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:

http://articles.mercola.com/sites/articles/archive/2011/04/23/dr-nicholas-gonzalez-on-alternative-cancer-treatments.aspx

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.)

http://curingmyeloma.blogspot.com/p/about-me.html

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!

Sunday, July 28, 2013

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.)

youtube.com/watch?v=L2YeWOcD6XU

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!).

Tuesday, July 23, 2013

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 discomfort in my upper back, around the ribs, getting worse over several months.  When it started to get really bad, I went to a general doctor I sometimes saw and he didn't investigate much at all, said I had a pulled muscle and sent me home telling me to use ice.  (can you spell m-a-l-p-r-a-c-t-i-c-e??)  Since it didn't get better, a couple days later I went to my chiropractor and asked him to do an X-ray but he said he didn't do X-rays and sent me home also.  By the next night I could hardly move.  When it got to the point where I couldn't get out of bed at all, I had to call 911.  Fortunately the fire station is two miles from my house, so at 2 in the morning they quickly came and hauled me into the ambulance and down to Harrison Hospital, 35 miles away.  (under different circumstances I probably wouldn't have minded two beefy young guys invading my bedroom in the middle of the night!  Except for their cologne, ugh.)

Harrison immediately gave me an MRI and saw a tumor had formed on one of my vertebrae (T6), which was starting to fracture it.  Some of the cancerous bone marrow cells had gotten out.  They put me into radiation for that tumor the very next day.  I stayed at Harrison for three weeks, having 18 radiation treatments and nothing more, really.  Those totally got rid of the tumor and I gradually began to get my mobility back, which fully returned within three weeks.  For the first two weeks I couldn't even turn over in bed, had to call in the nurses to reposition me.  That was a wild time.  Harrison Hospital were wonderful, they have a fragrance free policy there to begin with, and they bent over backwards to accommodate my MCS needs, even going so far as to purchase a special air filter for me, and using my Dr. Bronner's soap instead of the hand sanitizers whenever they'd come into the room.  They actually took the hand sanitizer dispenser out of the room altogether, unscrewed it from the wall.

The second episode was September of 2012, when I got a life-threatening infection in my throat.  My white blood cell count is kind of low due to having to constantly deal with the bone cancer cells.  I thought I perhaps had tonsillitis or strep throat, but none of my little natural remedies was working, and as it got worse and worse and to the point where I couldn't eat or swallow, again those beefy young guys had to come to the rescue and haul me down to Harrison.  (At least this time I could walk into the ambulance.)  This turned out to be something called epiglottitis, an inflammation of a little flap called the epiglottis that sits at the top of the windpipe and lets down either air or food/water, with every breath you take.  (No, I'd never heard of it either.)  I was in intensive care for two days on IV antibiotics and steroids.  While I was in there it was so bad that even the merest sip of water would cause me to gag and choke for half an hour.  Yikes.  The doctors told me that if I hadn't gotten in there within 24 more hours I'd have been dead as it would have closed off the ability to breathe.  Yikes again.

So Harrison Hospital has saved my life twice now, for which I'm very grateful.  Apart from these two episodes, I continue to run around as normal, as if they never happened, some sort of strange dream.  And meanwhile I'm doing everything I can holistically and naturally to keep my body strong and able to fight off these little bugger cancer cells.  That'll be another post entirely.

I want to say that even though all this sounds really dreadful and awful and scary, at no point was I scared or even anxious.  I felt the Grace of the Lord surrounding me the entire time, and never in my life have I been more grateful to be a Christian.  His angels were my constant companion, without being aware of it, and I felt a peace which never deserted me, even in the most difficult moments.  It makes me confident and unafraid to face whatever may come, as I know I am not alone.