Posts Tagged ‘cancer’

As many of you know, Melissa tried a gauntlet of both conventional and alternative approaches, treatments, and methodologies to fight cancer and live well over a half-score and three years past her first diagnosis. There were many approaches she did not try, but she was probably familiar with many of them anyways. She was a research guru and she never hesitated to share with anyone who was seeking information. Not sure if you noticed, but I said information, not answers. Having the “answer” is just way too simplistic to most any situation, least of all trying to survive any stage of cancer, especially Stage IV cancer. There is a lot of comfort that can be provided to one individual’s insanity of fighting cancer by looking at the success of another individual’s given treatment modality. But, Melissa would be the first to tell you, and she mentioned it in her blogs, that there is no such thing as a “magic bullet” (reference “And the beat goes on…” posted 16 Jun 12). What works for one person may not work for another, that’s why individual choice is so important. However, I’m also not saying, never look at the statistics or to testimonials of a given modality, just always try to apply your own individual filter to the specific situation and data.

So, why this theoretical BS from someone who has never walked in Stage IV shoes. What do I really know, just being a passenger on Melissa’s journey? Well, I just have to share our experience with one of the last modalities that Melissa tried. If you are more conventionally minded, then please excuse my rant, but when you don’t have too many choices left and you are growing weaker, often the best treatment choice seems to be one that won’t fill your body with toxic chemicals; one such modality is energy work. Now, if you really contemplate our human existence, aren’t we all, made up of various types of energy? According to Einstein, human beings are made up of multi-dimensional energy fields. And, if you understand science, energy can not be created or destroyed, right, only transformed. If you know Melissa’s story, then you know she used many energy healers since she metastasized in 2007. Various types, and one, Kurt Peterson, may have saved her life many years ago. If you’ve been following Melissa’s blog long, then you also learned that energy healers ARE NOT all created equal. One such bad experience and many dollars spent was with one named Karen Korona (if interested you can read of specifics in a previous blog). But, let’s discuss more recent events. So, Melissa had her third appointment set up with Kris Kraft, but to make a long story short, he did not make it in time. When you are really sick, and there aren’t many options, there is a tendency to put your hopes in treatments which may be your miracle. Looking back now, leading up to this unkept appointment, several stand out moments happened, and I’d like to share them so that all your brains can be exercised. In the months prior to Melissa seeing Kris, there were occasional communications by phone and email. During these correspondences, Kris would consistently reassure Melissa, in essence, that she was doing better. For example, he told her of his dreams: basically Melissa was on a porch in a summer dress, rocking in a chair. Heck, even after Melissa was treated the second time by Kris, he kept reassuring her everything was “on track” and she’d be fine (reference “I’ve been slacking,” posted 19 Jul 12). So, as these conversations proceeded both Melissa and I got a huge deja vu feeling of Karen Korona’s antics. And a very ironic and sad part of the situation, Kris was not a Karen Korona fan and actually insisted that Karen and Melissa part ways before he would even consider treating Melissa the first time around. Even though our feeling of unease persisted and grew greater–remember how patients put their hopes on things sometimes they shouldn’t in wait of a miracle–so the appointment with Kris stayed in our calendar. Also, keep in mind, that alternative treatments typically are fairly expensive, just like conventional ones, but the big difference, if you have insurance, typically conventional treatments are covered and paid for by insurance, whereas, alternative ones are not.

Sorry, my attempts to make this long story short are failing, so I’ll try and wrap up. As, Melissa continued to decline (blind, organ failure, enormous pain, growing brain hematoma and tumor, exploding systemic cancer process throughout her body, and hospice called), I contacted Kris, before he departed the East coast, and told him not to come, basically to save him a trip. At the time, trying to keep Melissa comfortable was my only concern, and repayment of funds to treat Melissa was nowhere in my scope of reason. However, Kris decides to come anyways since he has “non-refundable hotel reservations.” He also says that his guider, “Power,” is telling him to come. Well, needless to say, both Power and Kris had it all wrong and Melissa passed before he and Power arrived. And, to top it off, Kris comes to our house later, after Melissa died, to say hello. I mean, he was hired to treat Melissa, not to come by for an hour and have me tell him stories of Melissa’s death. So, after waiting a week or so after Melissa died, I noticed that Kris had not issued a refund for services to Melissa not rendered. Finally, I asked Kris, and Kris responded that his website clearly states that refunds can only be given if he is contacted within 10 days of the original appointment and that I contacted him only 8 days prior to Melissa’s appointment. So, I tried to reason with Kris, but his perspective is the only one he and Power wants to see. Well, he still has not done the honorable thing and reimbursed what Melissa paid him for. So, I just have to say, from my experience, not all energy healers are the same, so be careful out there. And, don’t get me wrong, I think energy healing can do a lot of good. In fact, I believe, Jesus was the greatest energy healer who ever walked on our planet. And, aren’t we mostly energy anyways? When I was resting, mostly sleeping, right by Melissa’s side in our bed while holding her hand, at about 15 minutes after midnight on February 16, Melissa stopped breathing here on Earth. At that exact moment, I felt a huge surge of energy go through my body which must have been that exact instance when Melissa’s energy, spirit, or whatever you want to call it, left her body and was saying her final goodbye to me on this Earth and transformed to heavenly spaces.

I think I have mentioned before how I lose friends every other week or so to this monster of a disease.  I have so many acquaintances, online, from all over the world, and quite a few of them I have actually spent time with face to face.  I met some incredible warriors during my time spent in Georgia this past spring.  Of the several I befriended, only two are still alive and their disease has spread to where they had to move on to conventional oncology.  Most recently were a woman with ovarian cancer and a man with pancreatic.   I have changed their names to Stella and Todd.

The woman had a situation very similar to mine with tumors in her peritoneum and fluid accumulating in the free space in her abdomen.  She called me frequently just to let me know she was still in the fight.  Well, the weekend before Christmas, I got a text from another friend saying Stella had passed on just the previous night.  Let me tell you, she was doing much better than I currently am.  She was running errands and living her life.  One evening, she went out to dinner and the, later that night, began vomiting.  She went to ER but her intestines ruptured en route.  Her heart went ballistic, she coded, and could not be revived.  Just like that, her precious spirit had left us.

I have been secretly fearful of this exact scenario playing out in my life.  Those tumors have only ever been visualized twice … both times in an OR and it was the surgery team that saw them.  Scans or MRIs have never picked them up because, though there are hundreds of them, they are too small to be seen.  But the photos taken last April when they had me on the table, sure looked big enough to show up.  Anyway, they are all over my large and small intestines, and my stomach.  And no one knows what those little boogers are up to.  In her case, they were eating away at her intestines from the outside until the wall of her intestine was thin enough to just rupture and that was it.

Many nights I have vomited, unprovoked, and been scared of that very thing.  How much vomiting is too much?  When is the time to go to the ER if I want to catch things before they eat into my intestines?  Could it be happening right now?  And now that it has happened to someone I loved, I’m even more scared!

Also, I have been having horrendous night sweats, so I went to my go-to conventional community, bcmets.org.  I typed Arimidex in the search block and the very first post to come up was from whom?  ME!!!!  Dated Mar 09.  I have used this drug before.  So I went to my spreadsheet to see what was happening with my markers while I was taking it.  Unfortunately, not one helluva lot.  So it didn’t really work for me then.  Not sure where that leaves me this time, but I will have markers drawn again on 1/10.

Tazzie Jump2And then, the day after Christmas, Todd left us.  Todd had pancreatic cancer and refused to believe the 3-month stats for that kind of cancer.  He survived for a few years, despite their predictions.  But ultimately, though he was with us for far longer than they expected, he did leave and he wasn’t even 50 yet.  So much loss after such hard battles.  And the devastation goes on for generations.  Cancer deaths don’t just affect the person who dies.  It takes everything from you, both physically and financially with nothing left to leave or give to anyone.  And then there is the genetic predisposition aspect.  All in all, it just sucks.

So it is bitter cold again here today … too cold for me to go play with Gunner.  So I sit here crying, zoning, writing, watching tv … when I would much rather have my “old” life back and be competing in a dog agility trial somewhere or xc-skiing since there is such wonderful powder at the ski resorts right now.  Or even Me & JR Sapper's Return Trailrunning all over town, shopping with my BFF and trying on stuff … none of which I have the juice for any more.  And I’m beginning to suspect it will never return.  My mother used to always say it.  She would say not to give things up because, once you do, you never get them back.  Now she didn’t mean material possessions … she meant activities and things you enjoyed doing.  And, in my situation, I can see her as being right on the money.  That is one of the biggest reasons that I have not given up a horse, despite the expense Gunner is turning out to be.  But I will not give up a horse.  If it is the last piece of my old life I can keep, dammit, I will.

Birthday CakeSo when one gets an autologous stem cell transplant (SCT), they take your stem cells and freeze them prior to giving you the chemo that will totally wreck your immune system (and I do mean totally). In my protocol, I got 96 straight hours of chemo.  That is what I had for Thanksgiving dinner that year.  Then they let you wait for 3 days, while the chemo clears your system (of course now I know it stays in your system for WAY longer than 3 days!), then they give you your stem cells back because your old immune system will die and these stem cells will build you a new one.

We call the day we begin our new immune system, the day we get our stem cells given back to us, our new birthday. Today is that day for me. Back in 1999 I received my stem cells on this day. Was the sickest I had ever been … except for last April when they were calling hospice, but that was from the cancer. In 1999, it was not from the cancer.  At that point, I had no idea what it meant to be sick from the cancer.  No, in 1999, that sickness came directly from the transplant. UGH!

Today I get my daughter’s help decorating the house for Christmas (yes, Christmas … not holiday), then go see my horse, then a visit from an old and dear friend.  Pretty good way to celebrate a birthday, if you ask me.

Even though the new immune system didn’t prove to be any more effective than the old one, any excuse to celebrate, right? So happy new birthday to me! 😉

Today, I am merely posting an article that was published less than a month ago. Folks, radiation is no joke. Not in therapy, not in hospitals, not in dentists’ offices, not in airports. Doctors prescribe it willy nilly like it’s not harmful. Like radiation toxicity isn’t deadly, first of all.

I had radiation treatment to both sides of my chest back in the day. Twelve weeks of radiation, five days a week. And before that, I had had a stem cell transplant, so my stem cells were squeaky clean. Then I had radiation. Then that cancer got mean enough to take over my abdomen and skeleton.

I’ve told people for years that radiation is no laughing matter. It totally obliterated my pectoral muscles and it took years to do it. It’s the gift that keeps on giving long after you’re done. It changes your DNA and there’s no repairing it. Most people scoffed at me. Well, you scoffers … And you know who you are … Open your eyes, engage your brain, and quit taking everyone else’s word for it! And then stop getting those bloody mammograms because they’re radiation plus trauma. I have said for years that mammos exacerbate breast cancer.

And how typical. Just look at how, now that they have proven what radiation does, they try to find a way to still keep the radiation. Its the freakin radiation that’s the problem! How can people who are so educated be so ignorant? Oh wait … It’s all about the money, money, money … At our expense, both financially and physically. Sweet jumping Jehoshaphat.

“Monday, February 13, 2012

Radiation Treatment Transforms Breast Cancer Cells Into Cancer Stem Cells

Breast cancer stem cells are thought to be the sole source of tumor
recurrence and are known to be resistant to radiation therapy and don’t
respond well to chemotherapy.

Now, researchers with the UCLA Department of Radiation Oncology at UCLA’s
Jonsson Comprehensive Cancer Center report for the first time that radiation
treatment -despite killing half of all tumor cells during every treatment –
transforms other cancer cells into treatment-resistant breast cancer stem
cells.

The generation of these breast cancer stem cells counteracts the otherwise
highly efficient radiation treatment. If scientists can uncover the
mechanisms and prevent this transformation from occurring, radiation
treatment for breast cancer could become even more effective, said study
senior author Dr. Frank Pajonk, an associate professor of radiation oncology
and Jonsson Cancer Center researcher.

“We found that these induced breast cancer stem cells (iBCSC) were generated
by radiation-induced activation of the same cellular pathways used to
reprogram normal cells into induced pluripotent stem cells (iPS) in
regenerative medicine,” said Pajonk, who also is a scientist with the Eli
and Edythe Broad Center of Regenerative Medicine at UCLA. “It was remarkable
that these breast cancers used the same reprogramming pathways to fight back
against the radiation treatment.”

The study appears DATE in the early online edition of the peer-reviewed
journal Stem Cells.

“Controlling the radiation resistance of breast cancer stem cells and the
generation of new iBCSC during radiation treatment may ultimately improve
curability and may allow for de-escalation of the total radiation doses
currently given to breast cancer patients, thereby reducing acute and
long-term adverse effects,” the study states.

There are very few breast cancer stem cells in a larger pool of breast
cancer cells. In this study, Pajonk and his team eliminated the smaller pool
of breast cancer stem cells and then irradiated the remaining breast cancer
cells and placed them into mice.

Using a unique imaging system Pajonk and his team developed to visualize
cancer stem cells, the researchers were able to observe their initial
generation into iBCSC in response to the radiation treatment. The newly
generated iBCSC were remarkably similar to breast cancer stem cells found in
tumors that had not been irradiated, Pajonk said.

The team also found that the iBCSC had a more than 30-fold increased ability
to form tumors compared to the non-irradiated breast cancer cells from which
they originated.

Pajonk said that the study unites the competing models of clonal evolution
and the hierarchical organization of breast cancers, as it suggests that
undisturbed, growing tumors maintain a small number of cancer stem cells.
However, if challenged by various stressors that threaten their numbers,
including ionizing radiation, the breast cancer cells generate iBCSC that
may, together with the surviving cancer stem cells, repopulate the tumor.

“What is really exciting about this study is that it gives us a much more
complex understanding of the interaction of radiation with cancer cells that
goes far beyond DNA damage and cell killing,” Pajonk said. “The study may
carry enormous potential to make radiation even better.”

Pajonk stressed that breast cancer patients should not be alarmed by the
study findings and should continue to undergo radiation if recommended by
their oncologists.

“Radiation is an extremely powerful tool in the fight against breast
cancer,” he said. “If we can uncover the mechanism driving this
transformation, we may be able to stop it and make the therapy even more
powerful.”

This study was funded by the National Cancer Institute, the California
Breast Cancer Research Program and the Department of Defense. UCLA’s Jonsson
Comprehensive Cancer Center has more than 240 researchers and clinicians
engaged in disease research, prevention, detection, control, treatment and
education. One of the nation’s largest comprehensive cancer centers, the
Jonsson center is dedicated to promoting research and translating basic
science into leading-edge clinical studies. In July 2011, the Jonsson Cancer
Center was named among the top 10 cancer centers nationwide by U.S. News &
World Report, a ranking it has held for 11 of the last 12 years. For more
information on the Jonsson Cancer Center, visit our website at
http://www.cancer.ucla.edu .

After my trip to the principal’s office yesterday, I had lots to consider last night.  It’s really hard for me to try to put a finger on why I am so uncomfortable here.  I laid awake last night until 1am crying, trying to figure out why I am so beside myself.  Not to mention that my innards are deciding they don’t want to move things along like they did just a couple of weeks ago.  What with abdominal cancer and already having had multiple blockages, when things ain’t movin’ through, Mama ain’t happy.  Always makes me think there’s bad things agrowin’ in there.

I had an entire childhood and young adulthood of learning that promises are never meant to be kept.  I was promised something and the next day, when I expected to do whatever was promised, there was a denial that the promise was ever even made.  As a young woman, my defense mechanism, as a result of that, was to always expect the worst.  If the best happened, well that was gravy.  But I expected the worst and prepared for it so I wouldn’t be rocked and shocked by it when a guy didn’t call who swore that he would.  In my healing, I am working toward dumping that because I don’t need it any more.

Well it finally dawned on me that’s the big issue for me here.  I am just triggered beyond belief in this environment. The clinic director will say something is going to happen and it doesn’t until I have made a total nuisance of myself.  In my opinion, it should not be that way.  If a physician tells me I will receive this drug or a physical exam, I expect them to come let me know when that will transpire.  But instead, I go back into the infusion room, trusting them to do what they say they will do, and next thing I know, my infusions are all done for the day and I’m headed out the door. Without what I had been promised.  And unwilling to wait another two hours to get it.

Now here, they’re not denying that they made the promise … but they’re not doing much to see it carried out.  The other patients, while they roll their eyes at it and such, don’t seem to be nearly as bothered as I am.  Why is this?  So I started reflecting on if I could change anything about that clinic, realistically, what would it be?  And it was something as simple as the nurse who is hooking me up for the day to ask how I’m feeling and if there’s any questions or concerns that could be answered for me today.  And then, if I have a question or concern, they could get the answer and get back to me with it before I leave for the day.  Because the way it is right now … remember in The Wizard of Oz when the Scarecrow said, “He went thattaway,” and crossed his pointed fingers in front of his body, each index finger pointing in opposite directions?  That’s what it feels like here to me.

So I have been doing inner child work for some time now … or trying to.  She ain’t talkin’ much yet.  But the fear and anxiety I’m feeling in this place is all about her.  And she showed me that’s the way she’s been living all her life.  Going from promise to promise just waiting for someone, anyone, to say what they mean and mean what they say.  In my childhood home, there was no such thing as that.  My father, God rest him, was an alcoholic and a very high-functioning one at that.  He spent 20+ years turning a broken college around to the point that it is now a university … drunk on his ass all day long.  He would make his only girl a promise … and oh how she hung on his every word … and come the next day, that promise had never even been made, much less was it going to be fulfilled.  That was the answer.  My daddy made me promises all the time, but rarely did they ever come to pass.  That’s what it feels like here. My father was supposed to love and protect me, not damage me. I am in the hands of someone who is supposed to save my life and I feel like I can’t get any straight answers from him.

It wasn’t a big deal really, my childhood of broken promises.  Certainly many had it way worse than I.  I was never, to my recollection, physically abused other than a good whuppin’ or switching, which by today’s standards would be considered abusive, I guess, in this day of no discipline for our children besides a time-out.  But for a little girl who hung on Daddy’s every word and never knew he ever drank alcohol until the day she left for college, it was very confusing.  Such mixed messages all the time.  I never knew if I was coming or going.  And there was other stuff too … some kind of energetic twistiness and I can’t put a finger on to this day.  But confusing as hell.  And that is the very thing that is being triggered in me, all day long while I’m here.

One part of me feels there’s no way I can heal feeling this way.  Another part of me feels this is part of the process and is a learning experience … something burning out of me or working through to be done somehow.  And so I wait … and I watch … and John keeps notes … if my labs start turning around and I start improving greatly, I won’t give a flying crap if they never keep their word again as long as they can keep my show on the road.  More blood being drawn Monday, so we’ll see what midweek brings next week, and go from there.  Hoping for major improvements before I bleed out too much more money.

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So I started taking cannabis oil in Jan ’09. This was all new to me at the time. I had no idea what kind of solvent was used, what kind of pot was used, etc. All I knew was that I wanted to get well and I had a source that Rick Simpson’s organization had recommended (just FYI, they no longer make recommendations like that). So I started taking this oil and went through the first 60 grams. According to Simpson, most cancers are cured by 60 grams if you take it all within 2 months. I did. I still had cancer, and it was still growing. I bought another batch from the same source. Took it and realized perhaps this particular medicine was not the right medicine.

During this time, I had met a guy in Colorado who was making oil and I got my next batch from him. I had become so used to the oil I had been using, that I didn’t treat this new oil with nearly enough respect. I knew this oil had been made from sugar leaves and trim mostly, so figured it would be a piece of cake since, allegedly, the last oil I had was made from all bud. So I measured out a dose … subtracted a little, but not nearly enough.

John and I had to go run some errands and I was sitting right smack in the middle of a Direct Buy club when it hit!!!!! Holy crap! I was already sitting down, but now I was having trouble holding my head up and that head was starting to feel very uncomfortable in a public place. I informed John we needed to leave and fast! Unfortunately, we still had a 45-minute drive before I could get horizontal.

By the time we got home, that stuff was rocking my world and not in a good way! I felt like I was having a heart attack and I was stuck somewhere between passing out and consciousness. I needed to pass out, but just couldn’t quite let go. Oh it was awful. I could’ve sworn I was having a heart attack. And there was John, stroking me and telling me it was all in my head; assuring me everything would be alright. Boy, that was a valuable lesson learned. When using any new oil, always lower the dose quite a bit, just till you know how it’s going to affect you just like any other medication.

So why then, you might ask, would I continue spending the money and paying the overdose price for this stuff? Because of all the research I had been reading, much of which is listed in the Cannabis Research List above. The way cannabinoids work within the body create healing in the body. And the fact that we have receptors and a system designed to accommodate a single plant in the plant kingdom … well, I just can’t ignore that. Couple that with the many people I know, personally, who have been healed (not just relieved) of addictions, hepatitis C, skin cancer, fibromyalgia, arthritis … let’s just say I’m thankful to live in a medically legal state.

And why oil? Isn’t that a bit extreme to be ingesting such concentrated doses of THC and CBD? Many reasons. First of all,one can’t go around smoking, or even vaporizing, all the time. Not to mention, it can’t be done in public anyway. So then, why not edibles? Still not concentrated enough of a dose plus most of them are made with sugar. If we’re talking healing, not symptom relief, we need the best medicine possible and eating a bunch of sugar would never be in a cancer patient’s best interest. Also, unless you make the edibles yourself, you don’t really know how much medicine you’re getting. I have had edibles from dispensaries that would either do nothing at all or make me forget how to breathe. So they’re just too unpredictable and sugar-laden for me to want to use for healing.

Enter cannabis oil. Not to be confused with butane or honey oil. If it’s golden, it has almost all THC and is mostly for spiritual or recreational use. Plus, butane is not made to be ingested even though the extractors will swear they got all the butane out of it. I don’t trust anyone that much. At least grain alcohol is relatively meant to be ingested. That’s just my personal comfort zone.

Another question one might have is how do you function if you’re that full of THC all the time? Well, that’s easy. You don’t at first. But that’s the point of starting tiny and slowly working up the dose. While you’re working up that dose you are slowly building your tolerance. Before you know it, you’re taking 1/4gm at a time and you’re not even feeling its effects. At that point, you’re off and running toward healing.

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Now all systems are go again.  We just can’t not go to Georgia.  You know how I keep talking about the trail of bread crumbs and the path illuminating in front of my feet?  Well, this is it.  I could stay here and do conventional chemo, and insurance would cover every red cent of it.  But there would be no immune recovery or immune stimulation.  And let’s face it. If my immune system was acting the way it should, it would not have escorted cancer in my door, much less poured it a drink and had it make itself at home. Yeah, it made itself at home alright. Took over the whole damn house!

Everything has fallen into place, and I feel very drawn to it.  As I said yesterday, I have felt that before and wound up in so much trouble.  The self-doubt that experience caused has left me not trusting myself very much.  Here’s the really weird thing.  I have not once, in the past five years, gotten No Evidence of Disease (NED).  I have had active cancer in my body the whole time.  And I’ve been close to death more than once.  But each time, I have pulled back up out of that to the point that people take it for granted that I will be just fine.  I feel like the Boy Who Cried Wolf in that one of these days, it’s going to be the one that takes me out of here.  But who knows when that will be?

The important thing is that, looking back, I see a distinct pattern of healing. Each time I go down, when I come back up, I am better than before.  Stronger than before.  More energized than before.  Wiser than before.  And older looking than before, but I’m trying to be patient with myself.  My body has been a war zone for the past five years.  A bloody battlefield.  So a wrinkle or two … a scar or two … expected status.

So, the Devil Went Down to Georgia.  Day after tomorrow!  If anyone knows any good boiled peanut roadside stands, holler!  This Southern gal has been out of the South for too long.