Posts Tagged ‘Immune Recovery Center’

Out with the old …

Posted: March 30, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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I promised an update … and now that I’m out from under the contract at the old place, and locked into one at the new place, I can sing like a bird.

Last week, on the day I had that horrible experience of my last blog post, a new patient came in at the tail end of that fiasco. Her name is Maria and she is a gorgeous, strong woman who has her own ND practice. She also has breast cancer. She walked right in and asked the room, “Is anyone here doing IPT?” I knew from that that she was just as vocal and opinionated as I am. I thought to myself … this should be an interesting week once she gets to know this place. I was absolutely right. She had just as much trouble in that front office as I did. By the end of the week, she was telling him, professional to professional, how messed up it was there. She went running back to the clinic from whence she had come: Progressive Medical Center!

This past Wednesday, she texted me from there … “I just got my IVC and it’s clear and has K3 in it without my even having to ask.” I told her there’s no way I could afford it. She said to just come by that she would put in a good word for me with the owner. So we did. OMG, that place was just as amazing as I had thought it would be. Instead of looking like a third world clinic, it was really nice, but of course it is … they do accept insurance, but not Medicare. We asked if we could take a look around and talk to someone about what they had to offer and pricing. They put us in a room to wait for Dr Agolli, the owner. He is an NMD/PhD and he came in and we started chatting. He listened to us, considered our story and then had someone show us around. The place was so amazing. They have the infusion area, which I am familiar with … but then they have so much more I just couldn’t believe it. All kinds of frequency devices, hyperbaric oxygen, ozone, the list just goes on and on in comparison to the other place.

I was sold on the facility, but more importantly, I liked the feel of the place. The people there were all upbeat and laughing … truly enjoying each other, both staff and patients alike. The next thing that got my attention was when we were back in Dr Agolli’s office and I told him that I had had a drop in numbers the first week, at the other place, with no cytokines or chemo at all. He raised his eyebrows and said, “Well why didn’t they just try that for another week without chemo? You might not even need chemo at all.” That had been my exact thought. So he told us to come back the next day to meet with him and another NMD, Dr Burdette.

We did and everything sounded great … the treatment plan and all … but I knew they were going to break my heart as soon as we started talking money. Unfortunately, it had taken us seven full weeks to get over there, and $11k while we were at it. But hey, I’m in the flow and all will be provided, right? Nice thought … but deep down, I didn’t really believe it. So the money numbers started flying and, just as I thought, even with deep discounts, no way we could swing it.

I got upset because of some misunderstandings about the price, and the billing gal went to tell Dr Agolli we needed to talk to him again. While we waited, she came back in. I was crying and this gal put her arm around me and got so close to me, I swear she could’ve kissed me … distinctly uncomfortable, but she was the sweetest thing! She was saying, “Now honey, don’t you cry. Don’t be sad. Dr Agolli is the owner and he’s awesome. He’s gonna work this out for you … don’t you worry.” This from a billing person … and they usually ain’t all sweetness and light! I’m telling you, last week, the nurses walked right past me, crying and shaking, and never even looked at me, much less tried to console me.

I cannot divulge the details of the miracle that came to me that day. But when Dr Agolli came back in, he went through every conceivable option … financing interest-free for a year … but I wasn’t down with doing a few treatments, dying, then leaving my husband to pay for the tx that didn’t work. We talked about the fact that not only is the cancer killing me, the cachexia is racing it to the finish line. He came up with a solution that I can’t even believe. It was truly a miracle … where we are being provided for this time, instead of us providing for someone else. And the price, at least for the next month, is one we can manage.

So we relax this weekend in peace … and look forward to a whole new ball of wax … and a whole new vibe … next week. I guess sometimes, you really do get what you pay for. And sometimes, the miraculous happens and you get help the likes of which you have never experienced.

Thank you to those of you who have been praying for me during this time. Next week, I’ll be right back, right as rain, blogging about this whole new clinic experience! Stay tuned … it’s about to get exciting up in here!

Last day here …

Posted: March 30, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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Today is the last day of my experience with the Immune Recovery Center. I have to give a huge hallelujah shout-out! Just sayin …

I will be going down the rabbit hole here shortly, so I really don’t have the time to tell you all what is next for me, but I will tonight, so stay tuned! There are miracles afoot!

Changing courses …

Posted: March 22, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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Well, so much for the possibility of good things. Markers jumped up 8 points again, so now we have officially spent thousands, once again, for nothing. We knew this was coming. I know the signs in my body when cancer is on the move and is not calming down. Even though I kept mentioning this to the powers that be, I kept being given the party line that “since we are stirring things up with the cytokines, sometimes you won’t see results till after you leave and things settle down.” That’s all well and good for the typical patient who hasn’t been walking this path for as long as I have. I know my body, its strengths, and its limitations by this time.

Here, they don’t know me, but they keep claiming to know all about me. Whatever that means. Now, in my experience, when treatment isn’t working, I have never needed to go beat down my doctor’s door to discuss a change. He’s usually the one chasing me down the hall as I run, screaming, away from conventional oncology. But, as I have already figured out, this place is certainly out of the ordinary, but I don’t think I would say that in a positive way.

We were aware that treatment was not working. My body is starting its slow decline … my tiny appetite is dwindling further, my belly is filling with fluid, my butt is disappearing. Yeah, I know the signs alright. Oh yeah, and those ever-increasing tumor markers that have increased by about 30 points in a month. So, we decided we needed to go about approaching a treatment change in a very methodical manner. We know that nothing changes quickly here, so we started in advance, in order to make things go as smoothly as possible … or that was the intent anyway.

There is a local oncologist to whom the clinic refers us if we need an opinion. So we arranged to see him last week knowing we needed to change. We got his drug recommendations and thanked him. Then we arranged to see one of the MDs on staff here Monday, to present these suggestions to him. He thought they made perfect sense and would be an easy change to make. He said it would be done for my chemo Wednesday (yesterday). Then we arranged to see the other MD on staff on Tuesday to go over labs, just in case I had that drop I was expecting … and since I didn’t get that drop, the change needed to be implemented. She said it was already done.

Then, John was in the lobby and I was outside talking to some folks, when the director walks past. He stopped and told each of us, separately, that he had the Taxol, Carboplatin, and only had to figure out the osmolality of the Vit C and it would all be good to go as soon as he returned from a meeting. We left feeling pretty decent, but I was still apprehensive given the track record here.

Yesterday, we came in and asked the nurse, first thing, what drugs were on tap for me. He said the same as always. Uh oh. Here we go … this is the crap that happens. I’ve seen it happen when patients were in their hypoglycemic moment and that was not going to happen to me. So we asked first thing and found the change had not been made. We told the nurse that there was a change and he said he would check on that. For the next three hours, we waited to hear that it was resolved, but every time we asked, they were still trying to figure things out because now there seemed to be a discrepancy between what the oncologist recommended and what we were asking for, but that was not the case. We had already laid all the groundwork with three different physicians.

Finally, my IVC was done and it was time for chemo. Since I was still fasting, and no one knew anything, John went up to his office to see what the hell was going on. Turns out the guy totally dropped the ball and didn’t calculate my dosage. WTH????? I finally got my chemo about 2:15 … fasting the entire time. So let me get this straight … you have nurses calling you for three straight hours about Buhmeyer’s chemo dosing and somehow it escapes your attention? And he says that I’m just used to have doctors to whom I can dictate … emphasis on that word from him. That was a very telling statement on many levels. First, he thinks I’m a dictator and secondly, he thinks when a patient brings him some research or a treatment she’d like to consider, that is dictating. To me, that is collaboration. I am used to practitioners with whom I can collaborate … healers who are interested in learning new things and doing the very best they can for each and every patient as an individual. This guy thinks we’re all just a bunch of sheep sitting back here and we’re all the same.

He is the biggest bottleneck in this clinic. He makes assumptions about his patients and lumps them all into one pain-in-his-ass and that is not the mark of a healer. In my opinion, this man is not interested in healing. If he is interested in healing, but looking at new stuff is just not his thing, then he needs to hire someone with whom we can collaborate. Someone he can empower to help us and not tie all the nurses’ hands.

If you go in there with a question or suggestion, that becomes the patient telling him how to do his job, etc. We are a threat to him. But why is that? To me, the earmark of a great doctor/patient relationship is the ability to freely share thoughts and ideas, always working toward either extending, or improving quality of, life.

This clinic could and uushould be a huge jewel in the South’s crown. The only affordable clinic in the country … and I guess you get what you pay for sometimes.

But we did get that treatment change … took much yelling and tears but we got it. The question is, at what price? I now have straight IVC without any vitamins or minerals in the bag. I have taxol and carboplatin instead of cytoxan, 5FU, methotrexate. I have glutathione and ALA by IV.

I may get well here. I may not. But if I do, it is not because of this guy … it is more in spite of him. I just find it sad that even the local practitioners know how this place operates. That the patients have to try to find a way to get what we need from this place. And despite of his delusions of kum bah yah in the infusion room, we all know we have to fight for every little thing here. The question is, in my case, is it doing more harm than good? I see that nothing here is really going to change. Only time will tell if I can get better here or not.

Bored in infusion-land

Posted: March 1, 2012 in Breast Cancer
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I had my third chemo treatment yesterday and got my lab results back yesterday from the end of the first treatment week. Numbers jogged back up to exactly where they had been when I walked in the door. I already knew that was expected status after the first week of real treatment. So nothing really new there.

But I’ve been having a really hard time getting settled in here. It’s not like any place I’ve been treated in the US, and it is in the South, so even though we’re talking about Atlanta (a metro area), I haven’t spent any time here in almost 30 years. It’s still the South in many ways … not that that’s all bad, but it’s just different.

Today’s post comes from my iPad, so no graphics for you today! The mobile WordPress app is all well and good, but I gotta admit to a bit of frustration with its visual editor. OK … a lot of frustration.

Speaking of frustration, I have experienced so much frustration here from the get-go. I came here expecting cutting-edge technology and maybe that’s what I’m getting. From the success stories I’m hearing from the patients around me, it must be. But it sure doesn’t feel like it.

Getting information around here is like pulling teeth. I keep seeing and hearing about mistakes being made all around me. When you’re in a large room with lots of other people, you’d have to be blind and deaf not to get a distinct “fly by the seat of your pants” feeling up in here. I see patients getting insulin and not being monitored carefully enough (IMO). It’s disarming to say the least. And if the goal of this clinic is to restore one’s immune system, anxiety is something that should never be allowed to happen in that infusion room, no matter what.

So being the delicate flower of the South that I am … I keep getting called to the “principal’s office” on a weekly basis. It kind of feels, by this point, like my life just isn’t complete without my weekly visit with Bradford. We made the suggestion that he hire just one more nurse so there could more eyes on patients once insulin is on board. But he explained that would raise patient cost by about $1100 and that would exclude a lot of people. He is currently able to meet people where they’re at, financially, so I guess there’s something to be said for that so long as his main goal is “first, do no harm.” And it is, or so he says. So another week of watching, listening and observing, except for when I’m down the rabbit hole, as we call it.

Let me tell you about that rabbit hole. That’s a very interesting place to be, if you’ve never been there. That’s that distinctly hypoglycemic place where they pound you with the chemo followed by immediate sugar. It’s so odd. They give the IV insulin and you taste it immediately … kind of a rubbery taste, much like you would imagine a bandaid tasting. But you don’t feel it at all. Takes a bit for the blood sugar to drop … in my case, almost exactly 26 minutes. And then you’re down there … chasing after the Red Queen and Alice. I get lightheaded, but since Benadryl is one of my pre-meds, I am already light-headed so I have to pay real close attention starting at about the 20-minute mark.

There is a point where, for me, the light-headedness turns a bit heavier … something deeper … where I feel myself pulling into myself, if that makes any sense at all. That’s when I call for the nurse. Yesterday, she thought another five minutes would be about right. Wrong. She walked out and within about 60 seconds, I had to have my hubby go get her with the chemo because when I start to go, evidently I go quick. That heaviness quickly turned into shaking and getting really light-headed … almost a place of desperation. Very strange indeed.

But then they pound the chemo via small syringe into my IV and, within a minute or two, I’m drinking an electrolyte replacement like Gatorade (but not Gatorade) and eating fruit followed by a sandwich. I haven’t been able to enjoy food in a few years now. It is a chore to be endured … the choices are few now … more like what can I get down and, on most menus, there’s not but one or two things. And they’re never the things a self-respecting cancer patient should eat for their health. Oh nooooo, never. So the dilemma … should I force myself to eat things that are alkalizing even though my body really can’t process them well and/or they don’t taste good any more … oh yeah, and they don’t have enough calories for the small amount I can eat? Or do I go for the calories and protein needs?

As far as enjoying food goes, that seems to be a thing of the past. I get hungry as in literal pain in my stomach.. But appetite is non-existent and, if you’ve never experienced a true loss of appetite, lemme tell you, not much food is going in when the appetite has disappeared. I never knew just how big a factor that appetite was. But when I’m hypoglycemic, omg!!!! Food tastes like it hasn’t in years! And I can’t get enough of it. That is a very unexpected pleasure. Gives me a huge bright side to my chemo day! So now I can think of things to bring to eat on chemo days that will taste uber good when in that rabbit hole place.

Well, my lymphatic massage gal just signaled me in … more next week after spending the weekend with my old college roommate raising cain!

The first day of the rest of my life

Posted: February 14, 2012 in Breast Cancer
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Ice coming out of the wall

Our last travel day went smoothly as we made out way south to Georgia.  Got a pic of some really cool, frozen runoff coming out of a wall by the highway.  Finally we made it to Georgia, got settled in in Marietta, and I am now ensconced in the infusion room of the Immune Recovery Center.  It was a bit of a goat rope this morning because they suddenly lost one of their physicians to an unexpected heart attack last week. The clinic was a busy one, which I would say is a good sign.  Either they’re really helping people here or they have one helluva marketing team.  Seeing that I could hardly find any reference to this clinic on the internet, I’m hoping for the former.

The first day started out much like any doctor’s check-in.  Filled out the necessary paperwork and handed over the credit card for the consultation fee.  In the exam room, after collecting a urine sample, they took preliminary information, accessed my port, and drew a crapload of blood.  By tomorrow, they’re going to know me better than I know myself.  Then they hung three bags on my IV pole:  15gms of IV Vit C, Colloidal Silver, and an anti fungal of which I can’t remember the name.  I spent the rest of the afternoon just chilling with the IV, talking to the director of the clinic, who is both a physician’s assistant and a licensed naturopath.

He is going to give me a small dose of Cytoxan chemo on Friday … a very small dose … to remove the protein from the outside of the cancer cells so they are more vulnerable.  That is a one-time dose.  I will also start Cytokine therapy Friday, or so they said today.  The insulin potentiation chemo will start next week.  One of the drugs will be Gemzar (gemcitabine) which is a chemo drug my cancer has never seen.

At this point, my biggest concern is food.  I just can’t eat much.  And he’s suggesting Megace which two different oncologists have not considered the benefit worth the risk, so I don’t

Butterfly bag

think I’m going buy off on that one.  I know I need to eat, but they’re just going to have to work around my situation and hope that, through treatment, we can get my appetite back.

Afterward, we had to rummage Whole Foods (found the cutest tote … I’m a sucker for butterflies these days … transformation), find some protection for my iPhone, and get a warm, cozy throw from Target.  I was so cold in there today.  Cloudy with highs in the 40s but tomorrow will be sunny with highs in the 60s.  Yup, leave it to the South to be bipolar!  I’m exhausted, so I’m headed to a glass of wine and my favorite meds.  Early bed for me tonight!

 

And today is a better day

Posted: February 9, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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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.

2012 and beyond …

Posted: February 6, 2012 in Breast Cancer, Cannabis Medicine, Spiritual/Emotional/Energetic
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Once again, I had come so very close to achieving remission … only one marker out of limits.  And then they started inching up again.  I went back to Vegas to see Kurt Peterson on Dec 3 for our fourth session together.  When Kurt examined me, he said there were tumors in all eight lobes of my liver, small intestine and spine.  There were some in my sacrum and pelvic girdle, but they’re not life-threatening.  The most important thing, right now, is the liver.  So he worked hard on that, the small intestine, and three spots on the spine.

I had a PET CT scan a month later and, compared to last spring, there was one helluva lot less cancer than there had been. My spine was clear and, of all the tumors I had on my liver, there was only one left.    A month later, none of that was there except one lesion in the liver.  But the downside to that is that one of my markers quadrupled within that same month.  So, as usual, a mixed bag of tricks in my results.  One thing looks really good and the other looks really bad.

Now, there is something that most alternative folks know about and, I would assume, many medical folks, but I never hear them mention this.  It’s called tumor die-off.  When cancer dies in your body, where do you think those dead cells go?  Into your bloodstream and lymphatic system to be processed out of your body.  If you kill it too fast, and your body can’t clear it quickly enough (and this applies to other conditions too), you may hit what is called a Herxheimer reaction or healing crisis. You pretty much get laid up with headaches, flu-like symptoms, etc.  And your markers can jump.  So I am, at this very moment, waiting for lab results that will tell me if that number jump was a die-off or if it is progression.  I am also packing for a trip to Georgia to the Immune Recovery Center.  There, I will be doing insulin potentiation therapy (IPT), IV Vitamin C, cesium chloride, and God only knows what else.  But the reason I’ve been writing so hard and fast, for the past week, is to bring the breast cancer journey up to present so I can write about my experiences there while they’re happening.

I’m really excited.  There are several places in the US that do IPT and immune therapies, but this one came across my radar in that magical way that I know something is meant to be.  Out of nowhere.  It was in a post in a group of which I’m a member and it was by a woman who had been to a similar clinic and was posting about her experience.  She said she had found out about this one in GA about three weeks into her treatment in NV.  The one in GA bills Medicare which the others do not do.  So it cuts my out-of-pocket expenses in half.  I had been considering doing something like this for quite some time. But why would I say that this was magical?  Because of the timing.    Disease is just starting to show signs of being on the move again and I will have a much better chance of kicking ass early on than if I let myself get in the shape I was in this time last year.  

I also think its magical because I had never even heard of this clinic before and I’d been aware of the others for years.  So here this one came, out of the blue.  It also happens to be 30 minutes from my brother/sister-in-law so we’ll get to stay with
family … and they have a huge house so we can bring my beloved companion sister doggies.  My cousin, whom I haven’t seen since I was a teenager, also lives there and another cousin four hours away.  That will be an awesome reunion!  And two other old friends, each of whom live in different directions, but still only a four-hour drive.  Everything is just dropping into place and that’s how it rolls with it’s the right path, I have discovered.  When something is meant to be in my life, it just all fits just like it’s supposed to.

So stay tuned for more big adventures in cancerland starting next week with my test results and then, a week later when I’m embarking on this new chapter.  But in the meanwhile, I will be catching you up on the other aspects of my story that intertwine so intimately with this cancer experience.

We’re getting ready to get back to all that cannabis stuff for a minute where I will be sharing with you the scientific stuff I have learned about it, its interactions in the human body, and why it is a  not just a way to get wasted, though like all such substances, can definitely be abused … but is, indeed, a medicinal herb.  My chemotherapy was made from diterpenes from the yew tree … that’s natural … and deadly.  Did you know that cannabis cannot kill you, no matter how much you take?  Do you know why?  More good times to come!