tag:blogger.com,1999:blog-73361080895977038962024-02-08T10:07:57.521-08:00Into the MysticJoy's journey with Multiple Myeloma . . .Unknownnoreply@blogger.comBlogger29125tag:blogger.com,1999:blog-7336108089597703896.post-49455724825109770442018-10-09T09:52:00.000-07:002018-10-09T09:55:05.281-07:00Medical update<br />
<div class="MsoNormal">
This latest treatment plan I’m on has been a real
humdinger, the hardest I've ever been on.<span style="mso-spacerun: yes;"> </span>It is a combination of lower
doses of four drugs, but it causing some very unacceptable side effects.<span style="mso-spacerun: yes;"> </span>I’ve been ready to quit on more than one
occasion.<span style="mso-spacerun: yes;"> </span>The first problem was that the
Revlimid, even at a small dose, after 10 days, caused a small stroke affecting
my left arm.<span style="mso-spacerun: yes;"> </span>It really is fully
functional, though slightly weaker, and they told me at the hospital, where
they thoroughly checked me out, that on a loss of functionality scale of 0-24 I
was a zero, so that was very encouraging.<span style="mso-spacerun: yes;">
</span>Any weakness should heal up on its own as the rest of the brain
compensates for the lost cells.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Now the Doxil is causing some heart pain and problems, which
landed me up in the ER a second time.<span style="mso-spacerun: yes;"> </span>After
a thorough bunch of tests again, at least I know it’s not a heart attack, but
it is still worrying.<span style="mso-spacerun: yes;"> </span>I think the Dex along with the Doxil has affected my heart. Dr. Chen wants me to see a cardiologist and meanwhile has put me
on a blood thinning drug (Xarelto) to prevent a further stroke.<span style="mso-spacerun: yes;"> </span>These drugs are pretty heavy duty. I asked Dr. Chen if we can switch to a different steroid other than the heavily stimulating Dexamethasone, and he said yes, so I'm looking forward to NOT doing that horrid drug any more.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When I told him I wanted to quit this protocol, Dr. Chen has
explained to me that there are not a lot of options at this point to get rid of
the plasmacytomas (small tumors) which have grown on various places in my body,
including some organs such as spleen and duodenum.<span style="mso-spacerun: yes;"> </span>The ones that got ahold of the lymph nodes
under my arm and were spreading fast were taken out by 15 radiation treatments,
which have been a challenge to recover from, but it’s mostly healed now.<span style="mso-spacerun: yes;"> </span>My actual myeloma numbers are very very good,
and what he told me is that the plasmacytomas are a mutated form of the myeloma
cells, which don’t show up on the regular blood tests nor do they respond that well to the immunotherapies (CAR-T for
instance, the latest thing, doesn’t budge them).<span style="mso-spacerun: yes;"> </span>So this four drug combo, which was also given
to me by a myeloma specialist in LA, who independently has the SAME protocol as
Dr. Chen to deal with this, is about the only path forward for now.<span style="mso-spacerun: yes;"> </span>So I MUST continue, but without the
Revlimid.<span style="mso-spacerun: yes;"> </span>No more of that drug, ever, for
me, don’t want to risk another stroke.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So this has been a real wild time these past three
months.<span style="mso-spacerun: yes;"> </span>I’ve gone from feeling like I
was in remission, which is what my numbers showed, to having a lot of tumors all of a sudden
which I didn’t know about because they weren’t being picked up in the monthly
blood test.<span style="mso-spacerun: yes;"> </span>And just getting into
treatment for that, tolerating the treatment itself, driving myself to the 15
radiation days, arranging rides down to Dr Chen’s for treatments (quite a
distance, and I can’t do it myself), etc. has taken all my available
energy.<span style="mso-spacerun: yes;"> </span>I’m still somewhat in shock that
this has happened and can’t quite get to grips with the sudden relapse.<span style="mso-spacerun: yes;"> </span>Especially because the blasted thing
shape-shifted and wasn’t showing up via normal tests.<span style="mso-spacerun: yes;"> </span>It’s a real formidable foe, but together with
my good doctor I’m convinced we can beat it.<span style="mso-spacerun: yes;">
</span>Dr. Chen has put more than one patient into complete remission from
plasmacytomas worse than mine, and is confident he can do so for me.<span style="mso-spacerun: yes;"> </span>If I can just tolerate these darned
drugs!<span style="mso-spacerun: yes;"> </span>Please pray that I can.<span style="mso-spacerun: yes;"> </span></div>
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</style>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7336108089597703896.post-87458233329516651322018-09-05T08:24:00.000-07:002018-09-05T08:24:00.446-07:00A Quick Update . . .Now that the radiation is done, I have consulted a myeloma specialist in LA by phone, Dr. James Berenson. He treats “metronomically” (i.e. low dose) like Dr. Chen does, and has put me on a chemo regimen for the next six months to address these plasmacytomas. It’s quite interesting that Dr. Chen has come up with an almost identical protocol on his own, but with different timing. Since Dr Berenson has done this with hundreds of patients, I talked Dr. Chen into doing his version. It’s a 28 day cycle, 14 days on, two week <i>BREAK</i> (yes!!), using lower doses of Doxil/Velcade/Revlimid and Dexamethasone.<br /><br />I had a rather rough first week (the Doxil caused a bad rash which I’m having to take steroids for, and the Velcade caused low blood pressure). But entering the second week now, the BP seems to be normalizing and the second round of Dex is holding the rash down. This isn’t fun. I spent an hour in bed this morning (sleepless from the Dex) planning all the things I can do to restore my health during the two weeks off. Have got Vitamin C infusions lined up, and an acupuncture session, and think I will also add a colonic, as these drugs really stop things up, need to move these toxins out.<br /><br />So that’s the regimen for now. More updates later. Wrestling with ever-slippery wily myeloma cells seems to have become my life these days. But I’m grateful for the functioning I do have, and for the good medical treatment and wonderful insurance (Medicare plus supplement, supplement paid for by a grant from the Leukemia & Lymphoma society, making my co-pays for this incredibly expensive treatment absolutely zero). Medicare for all should be available to all citizens of this country (like every other civilized country in the world).Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-19050695054687138082018-07-31T20:57:00.001-07:002018-09-05T08:30:02.390-07:00In answer to "How are you doing??" . . .<br />
<div class="MsoNormal">
Everyone keeps asking how I am doing, so I guess it’s time
for an explanation.<span style="mso-spacerun: yes;"> </span>For some reason, I
haven’t wanted to speak publicly about what I’m going through, it’s kind of
confusing and disorienting and all happening too quickly. So in case you're interested, here is the long version of an answer . . .</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I <i>thought</i> I was doing well on monthly Darzalex
immunotherapy maintenance – my M-spike has been pretty much flatlined at 0.1 for the past
nine months, so I assumed I was at remission.<span style="mso-spacerun: yes;">
</span>Wrong! <span style="mso-spacerun: yes;"> </span>I sort of wondered why I
wasn’t feeling as well as I should, with that kind of number, but was holding
off having an MRI done until the one-year anniversary of the last one in late
October, despite a pain in my shoulder.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The pain produced some badly swollen glands under the arm,
so I spent an entire month getting this diagnosed:<span style="mso-spacerun: yes;"> </span>three ultrasounds, a mammogram (not breast
cancer!), a needle biopsy (ouch) and then a PET scan.<span style="mso-spacerun: yes;"> </span>What was determined from all this was that it
was plasmacytomas which had invaded the lymph nodes.<span style="mso-spacerun: yes;"> </span>Those are cancerous tumors which form from
the myeloma cells.<span style="mso-spacerun: yes;"> </span>The PET scan revealed
that they are also in various other places on my body as well.<span style="mso-spacerun: yes;"> </span>Which is why I’ve been so tired.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I need to have a specialist answer for me WHY this happened
when my numbers were so good.<span style="mso-spacerun: yes;"> </span>I guess
the myeloma can get busy behind the scenes and shape-shift to such a degree
that it no longer puts out the protein which is what they measure your disease
progression with (M-spike). </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So in one month I’ve gone from thinking I was at remission and
feeling pretty good about that, to having this thing sort of taking over my entire
life again.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So<span style="mso-spacerun: yes;"> </span>. . .<span style="mso-spacerun: yes;"> </span>what we are doing . . .</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m set to begin a 14 treatment course of radiation next
Monday.<span style="mso-spacerun: yes;"> </span>I went for the setup today.<span style="mso-spacerun: yes;"> </span>They can’t get me started any sooner.<span style="mso-spacerun: yes;"> </span>Then after that I will start Dr. Chen’s recommended treatment of a four-drug
combination which has cured several of his other myeloma patients of
plasmacytomas.<span style="mso-spacerun: yes;"> </span>He is most confident it
will work and wants me started on it ASAP.<span style="mso-spacerun: yes;">
</span>I always like to delay the taking of drugs, but can really feel the need
for it; if something isn’t done, and quickly, I will no longer be around (and
quickly).<span style="mso-spacerun: yes;"> </span>So time is of the
essence.<span style="mso-spacerun: yes;"> </span>And before that, I need to
have a port surgically implanted in my chest.<span style="mso-spacerun: yes;">
</span>That is a device, sort of like a pacemaker, that they use to more easily
give you IV infusions.<span style="mso-spacerun: yes;"> </span>This is a several
hour surgical procedure, and will also happen on a radiation day.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So I call this the summer of no fun for me.<span style="mso-spacerun: yes;"> </span>My friends are in places like Alaska and Iceland, and my summer outings are to the overcrowded chemo room and radiation machine. Oh well, let me not lapse into feeling sorry for myself and try to find the blessings in each day, no matter how small. You don't need to be on top of a mountain or viewing amazing scenery to feel God's presence. When I need inspiration, I read scripture or look to the daily offering from Pastor Steve Garnaas-Holmes' Unfolding Light poems. He has a way of getting to the heart of what's real and what matters.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So please pray for me to weather and get through this <i>fifth</i>
major crisis since diagnosis.<span style="mso-spacerun: yes;"> </span>I got
through the other four and lived to tell the tale, but somehow this seems
qualitatively different.<span style="mso-spacerun: yes;"> </span>My system feels
weaker from all the previous treatments.<span style="mso-spacerun: yes;">
</span>(And part of me even possibly suspects at times that this could be from
all the drugs themselves, which can cause secondary cancers.)<span style="mso-spacerun: yes;"> </span>But that is just conjecture, nobody knows
what makes myeloma resurface or become aggressive.<span style="mso-spacerun: yes;"> </span>I like to blame myself for this, that or the
other . . .<span style="mso-spacerun: yes;"> </span>“If only I’d eaten this way,
or taken that supplement . . .”<span style="mso-spacerun: yes;"> </span>But it
really doesn’t matter at this point, as it’s all hands on deck to deal with
what’s going on and I can think about it later.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you for your concern, love, and prayers for healing, it means a lot to know you all care.</div>
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</style>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-7336108089597703896.post-90517056212600344342018-05-18T15:13:00.000-07:002018-05-18T15:13:42.670-07:00One cold after the nextTime for another blog update! (I seem to start every entry with that) I’ve been seeing Dr. Chen now for three months, and have had the Darzalex and Vitamin C infusions (25g) three times, to continue the maintenance. It seems to be going pretty well in that my numbers are excellent and the m-spike remains at 0.1. <br /><br />Except . . . the immunoglobulins are low. They have been consistently low for quite a long while and this can be the result of the myeloma itself, apparently, or it could be because of the Darzalex. Despite lots of reading, I can never seem to wrap my head around how the immune system works. It’s so complicated. But the IgGs are now very low, and it means a much greater susceptibility to infections. Apparently, they do not tend to rise back up on their own, even though myeloma is now gone.<br /><br />I have had one sore throat/cough/cold after another since January, four in all. This is very concerning to me, as I just can’t seem to shake it. As soon as it goes away, in a few weeks it’s back again. Despite my white blood cell and red blood cells counts being in normal range. I guess these immunoglobulins are all important.<br /><br />I went to consult with Dr. Gignac this week, the naturopath who works with Dr. Chen. He had some suggestions of things to take to shore up my immune system and get rid of the persistent upper respiratory infections:<br />
<ul>
<li>A new version of the mushroom supplement AHCC, Immunokinoko, which he said is hands-down the most effective of all mushrooms against bacterial AND viral infections. So even though it’s expensive, I have a six week course of that;</li>
<li>A new version of curcumin, called Tetracurcumin, developed by the man who does Thorne Research supplements, 39x more bioavailable than the other types;</li>
<li>and Vitamin C, three times a day. That’s an easy one. I thought because I was having 25g along with the infusion that would be sufficient, but Gignac said it clears out of your system after about four hours, so is required throughout the day.</li>
</ul>
Let’s see if this all does the job and my immune system can rise to the occasion and I can manage to stay healthy for awhile here. If not, I will probably have to have a monthly infusion of immunoglobulins, and I don’t relish that idea one bit. But it may be necessary, we shall see, fingers crossed. This is the last piece of the puzzle for getting healthy, all my other numbers look pretty good right now. Will report back, of course. Thanks for reading.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7336108089597703896.post-42690183464524622712018-04-07T22:27:00.000-07:002018-04-07T22:27:11.752-07:00Vitamin C replaces PomalystTime for another blog update! After seven or so months, my M-spike remains at either 0.1 or 0.2. And I’m told that is because the Darzalex creates a little bit of a reading by itself (background noise, they called it). So it looks like I am at remission. I continue to take the four hour Darzalex infusion once a month, along with Dex (the stimulant steroid — can’t seem to get away from that horrid drug — it takes me four full days to recover from it).<br /><br />I switched to a new integrative oncologist, who is letting the Pomalyst be dropped and giving instead a 25G Vitamin C infusion before the Darzalex. After one month on this my M-spike went from 0.2 to 0.1, so it is effective. I’m so happy to be done with the Pom and can really feel my energy and stamina starting to return. Though after a year on Pomalyst, I’m still feeling a bit run down from that rather strong drug, a derivative of Thalidomide — yep, that’s what we myeloma patients get!<br /><br />The immune boosting Transfer Factor has been dropped for now, it was too expensive and I couldn't tell that it was actually doing anything. Apart from a food-based multi vitamin and a few other basic supp’s, the four main anti-myeloma supplements I’m taking are:<br /><br />Magnolia Bark/Honokiol (Dr. Uzick initially asked me to take 9 of these a day, and I’ve whittled it down to only one or two — Honokiol is shown in studies to be effective against myeloma cells)<br />Ashwagandha (wonderful for sleep)<br />Curcumin (just 1g of an ultra bioavailable one)<br />Reishi mushroom extract (400 or 800 mg/day)<br /><br />I’ve also been enjoying reading some of the Medical Medium’s books, and he has a recommended list of anti-viral herbs, which I enjoy as a tea on a regular basis: Nettle, Red Clover, Mullein, Star Anise (the most beautiful thing!), Licorice Root, Lemon Balm and Feverfew. This tea really is helpful.<br /><br />And, I’m making a serious attempt to give up dairy products. These are sort of the last holdout for me, but I felt so much better the minute I did it. I replaced the yogurt I was addicted to morning and evening with a morning protein smoothie loaded with superfoods and wild berries, and not only is this great tasting, it is filling and kind of super charging, giving more energy during the day. I’m allowing small amounts of goat or sheep cheese, which is remarkably good. I don’t miss the yogurt or greasy cheddar cheeses at all. Along with trying to be dairy free, I’m also about 99% sugar free (except for special occasions), and mostly gluten free also (except for the wonderful all organic dark sourdough rye bread they have at Whole Foods — this is just too good to give up!). I feel so much better on this diet and won’t miss pizza if I don’t think about it. <br /><br />So that’s the regime for now . . . subject to change as time goes by.Anonymoushttp://www.blogger.com/profile/00140624639537052538noreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-74318688333180950822017-10-13T17:16:00.000-07:002017-10-13T21:08:43.417-07:00Well, that was over before it startedUnfortunately, 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.<br />
<br />
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 <i>not</i> 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.<br />
<br />
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.<br />
<br />
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!<br />
<br />
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. Anonymoushttp://www.blogger.com/profile/00140624639537052538noreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-90631207994424321432017-09-14T08:52:00.000-07:002017-09-16T10:58:24.923-07:00Back from the edge of the cliff<style>
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<br />
<div class="MsoNormal">
Six months into the Darzalex/Pomalyst/Dex regimen, things
are looking good.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>That’s so close to
remission I can see it on the horizon. (or more like around the corner)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>But I have my own plans about how to get off
it, see next paragraph.<span style="mso-spacerun: yes;"> </span>I really don’t
want to do a toxic drug on an ongoing monthly basis as maintenance.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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).<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>These two, along with curcumin, have studies
showing their effectiveness against myeloma cells.<span style="mso-spacerun: yes;"> </span>That’s MY remission plan!<span style="mso-spacerun: yes;"> </span>And to keep up the monthly Darzalex infusions.<span style="mso-spacerun: yes;"> </span>But Pomalyst has got to go!<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>It is time to heal my
system from the ravages of these drugs, which have saved my life over the last
six months.<span style="mso-spacerun: yes;"> </span>But now the time has come to
regroup and rebuild.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I feel like I’ve been given my life back, once again, from “the
edge of a cliff” as my doctor put it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ll report more soon on the effects of this CBD oil and
if/how it has worked for me.<span style="mso-spacerun: yes;"> </span>There is no
psychoactive effect from it, as the THC has been removed, it is just
cannabinoids.<span style="mso-spacerun: yes;"> </span>Of which there are several
hundred, most unstudied, according to this very knowledgeable doctor, who
specializes in this exclusively.<span style="mso-spacerun: yes;"> </span>He can
tailor the formula to fit one’s specific cancer.<span style="mso-spacerun: yes;"> </span>It doesn’t taste very good, and sometimes I
rub it onto my skin instead, which makes me smell like a pot plant!<span style="mso-spacerun: yes;"> </span>Or one of those guys who smoke so much weed
it’s in their clothes and hair and they reek of it.<span style="mso-spacerun: yes;"> </span>It’s not that bad, though.<span style="mso-spacerun: yes;"> </span>Welcome to the world of medical marijuana,
Joy!</div>
<div class="MsoNormal">
<br /></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-91783797124812826492017-05-10T22:41:00.001-07:002017-05-10T23:11:33.924-07:00Update one year later<style>
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<br />
<div class="MsoNormal">
It has been a whole year since I put up a blog post!<span style="mso-spacerun: yes;"> </span>A lot has happened on the health front.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>At first
I was looking for causes for this:<span style="mso-spacerun: yes;"> </span>Was
it too much stress?<span style="mso-spacerun: yes;"> </span>Did I get too much
toxic exposure?<span style="mso-spacerun: yes;"> </span>What have I done
wrong?<span style="mso-spacerun: yes;"> </span>Am I eating the wrong
things?<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>This appears
to be what happened. <span style="mso-spacerun: yes;"> </span>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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Hence it was time for another round of major chemotherapy
treatment.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, medical details below, you can skip this part if not
interested in the drugs, etc.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>It gets easier and shorter as time goes
by.<span style="mso-spacerun: yes;"> </span>The first one was a real bear with
some very weird side effects, but they say that is to be expected for most
people.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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).<span style="mso-spacerun: yes;"> 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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>So I’ve been in a kind of quarantine at home for
a month or so now. <span style="mso-spacerun: yes;"> </span>I’ve been pretty weak
and shaky from the anemia, so don’t want to go out much and do things anyway.<span style="mso-spacerun: yes;"> </span>Just one of those times to be got through
knowing there are better things ahead.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><i>But . . .<span style="mso-spacerun: yes;"> </span>the
good news is . . .</i></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The “three drug combo” (sounds like a McDonald’s meal), and
especially this immunotherapy Darzalex, is working extremely well for me.<span style="mso-spacerun: yes;"> </span>Both the doctor and his assistant were
thrilled when they saw the drop in my numbers and said I am having a fantastic
result!<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>(I know two such people.)<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>At least that is the plan.<span style="mso-spacerun: yes;"> </span>These new immunotherapy drugs can work
wonders.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I’m very grateful
to have the opportunity to do this and the insurance to pay for it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Once again, a big “Thank You” to my sister for driving me
every week to the Swedish Cancer Center for the infusions.<span style="mso-spacerun: yes;"> </span>Couldn’t have done it without you!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Oh, and I’m enjoying reading a book by Toni Bernhard called <i>How
to Be Sick</i>.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I
recommend her books.</div>
Anonymoushttp://www.blogger.com/profile/00140624639537052538noreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-54629908105152148482016-04-26T15:17:00.001-07:002016-04-26T15:17:37.122-07:00Ups and Downs
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<br />
<div class="MsoNormal">
Quite a
lot has happened since the last update, both good and bad. . . .</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">First, the good</b>:<span style="mso-spacerun: yes;"> </span>As I mentioned in the previous blog post, I
started chemotherapy last September 1<sup>st</sup>, 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).<span style="mso-spacerun: yes;"> </span>This heavy hitting drug regimen has had the effect
of reducing the myeloma numbers to almost zero!!<span style="mso-spacerun: yes;"> </span>My numbers have not been this low since before
tracking them began back in 2005. <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>All I ever did was watch my numbers slowly
creep up as the years went by.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span> I’m hoping to go off it all soon, once
this final stretch is complete.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>They
have brought me back from the brink of the abyss last year, and therefore I am
very grateful to them.<span style="mso-spacerun: yes;"> </span>And of course my
good doctors who are making a fortune prescribing them.<span style="mso-spacerun: yes;"> </span>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!!)<span style="mso-spacerun: yes;">
</span>(Twenty-one pills of Revlimid cost $10,000 — p<span style="mso-spacerun: yes;"></span>eople go bankrupt trying to pay for that
drug.)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;">The not-so-good:</b> <span style="mso-spacerun: yes;"> </span>Last winter a tumor had developed on my left
shoulder joint (called a plasmacytoma).<span style="mso-spacerun: yes;">
</span>It had been hurting for some months and I thought I just had bursitis or
something, so neglected to have it looked into.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>And after that, three weeks in a rehab center (also known as an
alternate universe) hanging out with the Alzheimer’s patients.<span style="mso-spacerun: yes;"> </span>Still with the arm in a sling and unable to
move it.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Do you want to know the absolute worst thing about being in
hospitals and rehab centers?<span style="mso-spacerun: yes;"> </span>Not being
able to take a proper shower every day and wash your hair!<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>(The rehab place thought a shower once or twice
a week was all people needed — arrgghh!!<span style="mso-spacerun: yes;">
</span>And in the hospital you can just forget it altogether.)<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Every four hours they'd give me another one, even
during the night.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>The osteopath
said it would be a “frustratingly long” recovery time, and he wasn’t wrong.<span style="mso-spacerun: yes;"> </span>I feel like I’ve been in the strangest
limbo.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>All the while still on
chemo.<span style="mso-spacerun: yes;"> </span>But it’s starting to feel like my
old life is returning, just rather slowly.<span style="mso-spacerun: yes;">
</span>I’ve left the crushing heat of Arizona and am getting resettled back in
the Seattle area, also a slow process.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would like to say a word of thanks to some of the people
who helped me the most during this past year:<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>And of course my incredible
mother, whose love and support and spiritual inspiration never wavers.<span style="mso-spacerun: yes;"> </span>Where would I be without you all.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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).<span style="mso-spacerun: yes;"> </span>People often comment they think I am very “strong”
to be able to put up with all this.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>If you hit the
rapids now and again, I know that there is a peaceful eddy just around the
corner.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The odd thing is that I find these episodes of extreme situations
easier to cope with than when things get back to more “normal”.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Okay, time to stop rambling.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>Hopefully more good news will be following in
the next blog post, whenever that may be.<span style="mso-spacerun: yes;">
</span>And I’m not getting up off any more floors any time soon.<span style="mso-spacerun: yes;"> </span><span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;"><span style="mso-char-type: symbol; mso-symbol-font-family: Wingdings;"></span></span></div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-7336108089597703896.post-82662441609859498402015-10-15T07:10:00.002-07:002015-10-15T07:10:38.126-07:00The turnaround
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<br />
<div class="MsoNormal">
Just a short update here.<span style="mso-spacerun: yes;"> </span>The twice weekly Kyprolis/Dex IV infusion treatments are
going pretty well and bringing the myeloma under control, that’s the main
thing.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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! <span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>So every day I take one of those, and
am slowly taking a few more basic vitamin supplements as well.<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>So am getting scarves and a hat, just
in case.<span style="mso-spacerun: yes;"> </span>It will grow back once
the treatments stop, it did last year after I stopped five months of the
Velcade.<span style="mso-spacerun: yes;"> </span>Vanity trumps all, it
would seem.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But at least things are on the improvement.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>That, and the
ultra-expensive drug I’m getting pumped into me every week.<span style="mso-spacerun: yes;"> </span>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. . . .<span style="mso-spacerun: yes;"> </span>Love to you all.
</div>
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7336108089597703896.post-34653513112632057102015-09-12T17:05:00.003-07:002015-09-12T17:05:53.320-07:00The summer from hell
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<br />
<div class="MsoNormal">
Lots has happened since the last update.<span style="mso-spacerun: yes;"> </span>First of all, a <i style="mso-bidi-font-style: normal;">HUGE</i> <i style="mso-bidi-font-style: normal;">THANK YOU</i> to all
those who contributed to my health care costs via the GoFundMe campaign and the
Holistic Healing Foundation. <span style="mso-spacerun: yes;"> </span>I
have such wonderful friends and family, such a blessing you all are.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Okay, here’s the long and rambling story . . .<span style="mso-spacerun: yes;"> </span>In late June, I went onto Velcade again
for five weeks, which was not a success (see below post).<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>Trust me to come down here to this
good-air environment and catch that stupid thing.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I’ve even gone off all my supplements,
as they just are not tolerable any longer.<span style="mso-spacerun: yes;"> </span>(and sometimes I think I feel the better for it!)<span style="mso-spacerun: yes;"> </span>The first month with Valley Fever was
very rough, with fever, sweats, nausea and extreme fatigue my daily companions.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>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!<span style="mso-spacerun: yes;"> </span>Fortunately
my co-pay was $6.16, but some people are having to pay that!).<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>But I was so run down from the Valley Fever, that I was
afraid to start.<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>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. <span style="mso-spacerun: yes;"> </span>I also got very dehydrated
over the summer.<span style="mso-spacerun: yes;"> </span>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!<span style="mso-spacerun: yes;"> </span>But this <i style="mso-bidi-font-style: normal;">really</i> isn’t the best way to lose
weight.<span style="mso-spacerun: yes;"> </span>Some of it is now coming
back as all I really want to eat is sweet stuff, saltine crackers & ginger
ale, iced juices etc.<span style="mso-spacerun: yes;"> </span>Too many
carbs, but vegetables make me queasy to even think of them most of the time.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So I’ve kind of felt stuck between a rock and a hard
place:<span style="mso-spacerun: yes;"> </span>if I don’t start chemo the
myeloma is taking over, and if I do, the V. Fever could cause more havoc.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>(so much for Velcade)<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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!).<span style="mso-spacerun: yes;"> </span>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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, not the prettiest picture at the moment, it has certainly
not been an easy summer. <span style="mso-spacerun: yes;"> </span>Sorry
for rambling on here, I’m just trying to explain a complicated situation.<span style="mso-spacerun: yes;"> </span>Hopefully by the next time I write
things will be a lot better.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Love to you all who have taken the time to read all this.</div>
<div class="MsoNormal">
Joy</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7336108089597703896.post-71195085159976437542015-06-26T09:47:00.000-07:002015-06-26T09:47:40.433-07:00Back on Velcade
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<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Well, another round of chemo has begun.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>There
will be some changes this time, though.<span style="mso-spacerun: yes;">
</span>The doctors love the “three drug cocktail” (Velcade + Revlimid +
Dexamethasone, a strong steroid).<span style="mso-spacerun: yes;">
</span>They say it works synergistically to enhance the Velcade.<span style="mso-spacerun: yes;"> </span>I had such a hard time with the Dex
last time, it was very intense and crazy, so this time I have elected <i style="mso-bidi-font-style: normal;">not</i> to take it, or the Revlimid, which
can cause a detached retina.<span style="mso-spacerun: yes;"> </span>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.
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What I am taking instead are several synergistic agents
which are natural, at the direction of my naturopath.<span style="mso-spacerun: yes;"> </span>He told me there are actual studies to show these work to
enhance the effectiveness of Velcade.<span style="mso-spacerun: yes;">
</span>(What they are:<span style="mso-spacerun: yes;"> </span>Curcumin,
Wobenzym pancreatic enzymes, L-Carnitine, PectaSol citrus pectin and magnolia
bark.)<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>This time I figure I haven’t got much to lose by trying
these other substances with it instead. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
Anonymoushttp://www.blogger.com/profile/00140624639537052538noreply@blogger.com1tag:blogger.com,1999:blog-7336108089597703896.post-45806311257116911182015-04-16T09:49:00.000-07:002015-04-21T08:04:11.625-07:00Vitamin C and clean desert air!<style>
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<br />
<div class="MsoNormal">
Profound apologies for not updating my blog recently (if
anybody’s even listening!).<span style="mso-spacerun: yes;"> </span>I’m
doing okay, despite climbing M-spike numbers.<span style="mso-spacerun: yes;"> </span>It appears that five months of chemo drugs last year didn’t
really do much to halt the progression of myeloma for me.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>There are some
great results coming out from the clinical trials and both my oncologists are
excited about this line of treatment – coming soon!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Meanwhile . . .<span style="mso-spacerun: yes;">
</span>I have found a wonderful oncological naturopath to work with down in
Arizona, Michael Uzick.<span style="mso-spacerun: yes;"> </span>A link to
his website and clinic is over on the right.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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).<span style="mso-spacerun: yes;">
</span>Interesting – but expensive! – stuff.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The good news is that all of the above has <i style="mso-bidi-font-style: normal;">HALTED</i> the progression of the myeloma in
my system.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I tried so many
things on my own (see all the previous posts), but without professional
guidance, none of it came to much.<span style="mso-spacerun: yes;">
</span>But with Michael Uzick’s help, things are really starting to turn
around. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>The air quality out in this
high desert is awesome . . . but must watch out for the rattlesnakes and
scorpions!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So that’s the update on the medical front for now.<span style="mso-spacerun: yes;"> </span>I promise to post more regularly as to
the outcome of Michael’s regimen.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And lastly . . .</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>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.)</div>
<div class="MsoNormal">
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Love and blessings,</div>
<div class="MsoNormal">
Joy</div>
</div>
<div class="MsoNormal">
<a href="http://www.holistichealingforcancer.org/">www.holistichealingforcancer.org</a><br />
<br />
<br /></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7336108089597703896.post-13135789136375848602014-07-24T09:22:00.001-07:002014-07-24T09:32:01.871-07:00Just Checking In . . .I have been ignoring the blog lately . . . sorry. Sometimes you just don’t feel like talkin' about it, ya know?<br />
<br />
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 <i>finally</i> 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.<br />
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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 (<a href="http://www.therasage.com/">www.therasage.com</a>) 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: <a href="http://therasage.com/blog/cancer-therapy/">http://therasage.com/blog/cancer-therapy/</a><br />
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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.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7336108089597703896.post-51974362989309526512014-02-23T23:21:00.000-08:002014-02-23T23:21:35.937-08:00Onward 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.<br /><br />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.<br /><br />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.<br /><br />Okay, that's probably way TMI, so that's enough for now. Onward through the fog, as I like to say . . .Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7336108089597703896.post-58932863678318611172014-01-15T15:53:00.001-08:002014-01-15T15:53:07.676-08:00"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.<br /><br />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.<br /><br />Meanwhile, in order to clear out some of these toxins from my system, I found a page of detox <a href="http://bembu.com/detox-soup-recipes" target="_blank">soup recipes</a> 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.<br />
<br />I've ignored the blog of late, will try and post here a little more as "treatment" progresses. Pray for success, please!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7336108089597703896.post-71447812713184916042013-12-03T20:58:00.000-08:002013-12-03T20:58:44.785-08:00One step forward and three steps backI 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. <br /><br />But no. Not only did they <i>not</i> 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, <i>Wheat Belly</i> by Dr. William Davis . . . highly recommended – at last, a nutrition book by a doctor with a sense of humor! . . . and <i>Grain Brain</i> by Dr. David Perlmutter.)<br /><br />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.<br /><br />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.<br /><br />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.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7336108089597703896.post-89187074792990036092013-10-19T21:36:00.001-07:002013-10-20T09:26:43.007-07:00Back on trackI 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. <br />
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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 <i>Grain Brain</i> which I can't wait to read next. <i>Wheat Belly</i> 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.<br />
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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).<br />
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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!).<br />
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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. <br />
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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. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-61899866490546421892013-10-11T16:32:00.001-07:002013-10-11T16:32:31.448-07:00Abrupt change of courseI 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.<br /><br />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 <i>all</i> 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.<br /><br /><a href="http://www.chrisbeatcancer.com/dr-gonzalez-dismantles-ketogenic-diet-for-cancer/#comment-33257" target="_blank">Here</a>
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) <br /><br />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.<br /><br />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.<br /><br />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 <a href="http://margaret.healthblogs.org/other-alternative-treatments/nigella-sativa-black-cumin/" target="_blank">Black Seed Oil cancer protocol</a>.
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.<br /><br />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.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7336108089597703896.post-48871069915069110452013-09-01T19:44:00.002-07:002013-09-01T19:44:36.109-07:00My first experience of the chemotherapy roomTime 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.<br /><br />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.<br /><br />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.<br /><br />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. <br />
<br />So I'm sitting there reading <i>Wheat Belly</i>, 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.<br /><br />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.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7336108089597703896.post-74636185933206081322013-08-18T15:00:00.000-07:002013-08-18T15:02:42.956-07:00Some Woo-Woo stuffI've been reading an interesting book lately, <a href="http://www.amazon.com/Dying-Be-Me-Journey-Healing/dp/1401937519/ref=sr_1_1?s=books&ie=UTF8&qid=1376862931&sr=1-1&keywords=dying+to+be+me" target="_blank"><i>Dying to Be Me</i></a>, 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.<br />
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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.<br />
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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).<br />
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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.<br />
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So having said that, I'm going to slightly change the title of this blog. Instead of "Joy's Journey <i>with</i> 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.<br />
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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.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-7336108089597703896.post-81529172135483299182013-08-12T21:19:00.000-07:002013-08-12T21:44:49.775-07:00My 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, <a href="http://www.david-lerner.com/">David Lerner</a> (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.<br />
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Then I met via Skype with <a href="http://dietarytherapies.com/">Miriam</a>, 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.<br />
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Then today I saw my endocrinologist for the twice-yearly checkup, and she is <i>thrilled</i> 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 <i>so</i> 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. (<i>What I did:</i> 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.) <br />
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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.<br />
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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.<br />
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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.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-35119354732744285672013-08-01T20:49:00.000-07:002013-08-01T20:55:13.556-07:00Vegetarians vs. Meat EatingPeople keep mentioning Gerson therapy to me. Below are my reasons for not being interested in doing this right now.<br />
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<b>The short reason: </b> <br />
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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. <br />
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<b>The long reason:</b><br />
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I don't think there's a one-size-fits-all diet for curing cancer. While Gerson may work for <i>some</i> 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:<br />
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<a href="http://articles.mercola.com/sites/articles/archive/2011/04/23/dr-nicholas-gonzalez-on-alternative-cancer-treatments.aspx">http://articles.mercola.com/sites/articles/archive/2011/04/23/dr-nicholas-gonzalez-on-alternative-cancer-treatments.aspx</a><br />
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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: <br />
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<i>"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. <br /><br />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 <b>he requires that his myeloma patients eat red meat</b>. [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.</i>"<br />
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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.)<br />
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<a href="http://curingmyeloma.blogspot.com/p/about-me.html">http://curingmyeloma.blogspot.com/p/about-me.html</a><br />
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And . . .<br />
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Nora Gedgaudas, the author of <i>Primal Body/Primal Mind</i> 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:<br />
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<i>". . . 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><br />
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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.<br />
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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!)<br />
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I seem totally incapable of making short posts here. Perhaps I should start putting an abstract at the top!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-66529482685761226482013-07-28T13:19:00.000-07:002013-07-28T13:33:57.194-07:00A note to those with MCSThis 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.<br />
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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.)<br />
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<a href="http://youtube.com/watch?v=L2YeWOcD6XU">youtube.com/watch?v=L2YeWOcD6XU</a><br />
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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.<br />
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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. <br />
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Do a yearly cleansing regime or two, read Sherry Rogers' <i>Detoxify or Die</i> 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.)<br />
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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.<br />
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Love to you all, I'm out to take a walk now (oxygen from exercise is an excellent detoxer!).Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7336108089597703896.post-25534479897041456052013-07-23T09:43:00.000-07:002013-07-24T09:34:30.728-07:00Hospital StaysA 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!<br />
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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.)<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
<br />Unknownnoreply@blogger.com4