Posts Tagged ‘IVC’

Putting Georgia in my rear view mirror …

Posted: May 10, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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Monday I decided not to do chemo but I did get my labs drawn. Well, come Tuesday afternoon, those labs came back. My white blood cell count is alarmingly low, as are my platelets, my granulocytes, and my neutrophils. This puts me at risk for a bacterial infection which would buy me a one-way ticket to Gloryland, as if the cancer itself wasn’t enough. So no chemo. For two weeks at least, according to the clinic.

Now in conventional oncology, this doesn’t happen. When counts drop, they give you colony stimulating factors to get you to produce more white blood cells, so treatment can continue. Because, face it, cancer doesn’t wait just because you have to postpone treatment. Well, since they want me to sit here and get eaten alive for two weeks before they will do anything more than oxidative therapy (which quadrupled my circulating tumor cells in two weeks), I might as well head home to my oncologist who knows cancer and its treatment.

I kept myself alive, and kept my body pretty happy, up until now. But now that I am plagued with multiple issues, I need someone who is both well-versed in cancer and has graduated clown school so he can fully juggle all the balls I will be throwing at him … my oncologist. Trouble is, he is already partially retired …. my God he has got to stay in the game at least until my days are over!!!!! Honestly …. I trust him so much and he understands my wants and needs, and respects my choices, more than any other oncologist I have ever had and I have had a few in many different states.

So today, the oil is being changed in the car, and tires rotated, preparing for the trek back to Colorado. Thankfully, a local oncologist prescribed me some Levoquin to keep this bronchitis from turning into pneumonia in transit, because God only knows I don’t have enough meat on me to fight back right now. I am beaten down and broke … crawling home out of resources, both physically and financially. The donations we collected will get us home and will pay for some hyperbaric oxygen, IV Vit C, mistletoe injections, or whatever integrative modality I find to help my body through this conventional treatment upon which I will now have to rely.

I have had a great run with alternative therapy. None of it has really stopped the big wheel from turning for me except the energy work of Kurt Peterson and Kris Kraft. And, if I am still able this summer, I will be flying to see Kris Kraft to see if he can energize me like he did this time last year. My system now just has so many limitations that alternatives, in the form of food and supplements, will no longer cut it. I had hoped I would have a bit more of a game plan today because I met with the dr who ordered my liver biopsy. But the results I needed were not in yet, so we do know it is metastatic lobular carcinoma (news flash, huh?) but we don’t know if it is ER/PR positive, though I do think it is ER positive which could give me some options. And the big piece we are still missing is the Her2neu status. Her2neu is an oncogene that makes the cancer way more aggressive, so there have been a couple of great, targeted treatment options for those who carry that gene. My original cancer and my mets didn’t carry it. But metastatic disease can switch back and forth several times, if one lives with mets long enough. So though it would mean my cancer is more aggressive, I find myself hoping I am Her2neu positive now so I can use Herceptin and, when that runs out, Pertuzumab which is hitting the market in July. Only in Stage IV disease would one wish to have a more aggressive disease just to have more treatment options. Cuz when you’re out of options, you are out of options. Since I have been exposed to 9 drugs in 2 months, I am a bit worried about resistance or if anything will make me respond.

Anyway Monday morning, we will pack up the car for the last time and head back home. To this day, I do not know why I was sent here. Obviously not for me. I just hope something good came out of it for someone so all this money spending and suffering was not in vain. I have to admit it will be great to get back to the Rockies … my home … my daughter … my friends …. and my horse, though at this point I don’t have the stamina to even catch him up out of the pasture. Hoping for a good summer … at least the strength to get in one good horse camp … just please y’all be in prayer for my oncologist, Dr Headley, because he is going to have one tangled knot to try to straighten out.

First Progressive chemo week

Posted: May 7, 2012 in Breast Cancer
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Well I was going to post about my first chemo week last week or over the weekend. But it got a little wacko last week, so I just didn’t get to it. So I began my IPT last Monday and had twice, on both Monday and Wednesday. Here, I am getting a nasty four-drug cocktail of 5FU, epirubicin, cytoxan, and gemzar. The first day was a little rugged while I was in the hole. I went a little too low. My heart was thumping against my chest and I was sweating up a storm. The real downside was that, when I was doing this before, when I was given the green light to eat, I could solid chow down. The only time I was really able to chow down. But not this time around. That was a definite disappointment but oh well .. maybe Wednesday would be better.

Or not. Tuesday I had received a bag of amino acids, then went back for chemo on Wednesday. I was already just feeling a little down physically. I was given my insulin and settled in for the ride. About 20 in, the nurse asked how I felt and I said I was probably 5-10 out and she said I was getting that look. So they checked my sugar and it was in the 60s with one glucometer but they didn’t believe it, so they used a different one and sure enough, my sugar was in the 40s. Needless to say, the other glucometer went in the garbage that day. So they administered my chemo drugs but that push takes quite some time. So down I went … like a rock! Damn but I was panting, sweating and my heart was ready to come out of my chest. All I could do was just sit there with my eyes closed and try to just breathe through it. The nurse kept asking if I was OK and I just nodded. When it was time to eat, I drank juice, ate some fruit, and thought I could eat some deviled eggs. Nope, too dry. So I proceeded to drink an Orgain and that felt like a fist in my stomach. That was it.

That day, I didn’t get my insulin until around noon and I was fasting. I also declined my dexamethasone because it messes with my vision. This was something I may never do again … refusing dex. I was done eating by around 1:30 but I never felt right the rest of the day. There were two things I did, that day, that I don’t usually do. There was this energy guy there who can actually create magnetic fields with his brain. He is from the N Georgia mountains (re: Deliverance … honestly … claimed to have gone to high school with one of the Dueling Banjos boys .. yikes!) and he is actually measurable. He has been heavily studied and he goes up to Duke once every other month to knock Lyme disease out of folks. Anyway, he put the palms of his hands about an inch away from the bottoms of my feet, with my shoes on, and the soles of those feet heated up immediately. He jolted me a few times and then there was a guy selling these machines called Theragem and he put that over my brain and my spleen for a bit.

Later, at home, boy did I get hit! I was freeeeezing and sweating, dry heaving, nauseous, feverish, YUCK! It dissipated during the night and when I woke up, I only had a headache right between my eyes … but the next day, it was time for my liver biopsy which was anything but smooth.

My showtime was 10am and it was, of course, fasting. What I didn’t realize is that my biopsy wasn’t supposed to occur until 1pm. And what actually transpired was it didn’t happen until 3pm. Fasting. And, true to form, my blood pressure was low … very low. I was dehydrated and have been for weeks, so they would not sedate me fully due to the blood pressure. This wouldn’t have been so bad if they only needed one sample. But they needed six.. OMG, I was raising hell and whining like a little girl! Finally it was over, but with so many sticks, they then had to observe me for four hours for possible bleeding. Didn’t get home till 8 or so.

So now those samples go to pathology to determine estrogen and progesterone receptor status as well as Her2neu. They also go to a lab called Caris for some genetic determinations of which chemo drugs will, or will not, work for me. Let’s hope the drugs I am on will match the ones I need to be on. Along with all this, I started getting my cold again.

Today, I got my bag of Vit C after deciding not to do chemo today because I just didn’t feel well all weekend. I got labs drawn today, so without knowing if my body was able to handle it, I just didn’t feel comfortable. Now I am back at the room and lying in the bed, exhausted. I am still getting weaker because I am still getting skinnier … losing more muscle. So now I am on the hunt to resume TPN because, without the fluid I am carrying, I am betting I am about 110, which is way too thin seeing I am not looking for a new career as an old, wrinkled supermodel.

So we will get lab results in a couple of days and hopefully all this discomfort is about cancer dying; not cancer winning. Boy, has this every been a ride y’all! And obviously, it is not over yet.

On a better note, this weekend I got to meet with yet another Southern cousin … this time from my mother’s side. I have only met him once before as a teenager. It was wonderful spending time with him and his wife. Here we are at the condo.

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Week 5, Round 3 …

Posted: May 1, 2012 in Breast Cancer
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So we are launching a new offensive now. I have resumed IPT after taking a month off. The disease is rapidly on the move, so we have to counter it quickly. There are things we do not have accurate information on like my estrogen receptor/progesterone receptor status and my Her2neu status. In metastatic disease, this can switch back and forth so treatment options can change and we don’t have a real accurate read on this one since they lost my seven litres of ascites fluid last year. So Thursday, I am succumbing to a liver biopsy. I have been avoiding it for the past year (that was their suggestion when they lost my fluid) but the time has come that we really need accurate intel and the only way to get it is from behind enemy lines, so send in the Recon!

The samples will be send to pathology and they will also be sent off for a Caris test which can tell which drugs will be effective for me, but does it based on genetics and such. These results will take weeks to come back, so in the meanwhile we are starting with four chemo drugs that previous testing indicates I have sensitivity to because we have to throw something at it quickly. I have also started using a product called DCA. I have been watching this for years and now it is time to pull out all the stops, so I have added it to my protocol as of last Thursday.

I had my first Progressive IPT yesterday. It was done with much more attention than it was at Immune Recovery. They had all of your stuff sitting there, at your chair, waiting for you. They monitored your O2 saturation and blood pressure the whole time and monitored your blood sugar the whole time as well. They took it when you first arrived, then to determine when you are at your therapeutic moment, then to determine when your sugar levels have come back to normal. And while you are getting your chemo, they put a FIR heat lamp over your cancer spots to further weaken the cancer cells. I have also added this exercise with oxygen thing they do here. There is a machine we call a Jiggler that … well, it jiggles/vibrates you. You stand on it, with an oxygen mask on. It uses vibration to exercise your muscles, but with the oxygen it is supposed to be helpful with cancer. Not sure of the mechanism of action, which is unlike me, but at this point, I don’t even care. God sent me to this place and I am going to trust them. The only thing I’m trying to micromanage right now is to be sure the financial arrangements are as we discussed.

On the home front, we moved out from the family and moved into the Residence Inn. It will be a much better arrangement for all involved, but it adds another $2700 to the monthly expense which, again, is a screaming deal since that is half what the room usually goes for, but it is still more than our mortgage payment … sigh. But the unfortunate truth that I am learning from the other Stage IV women around me, is that we just go from one thing to the next, much like we do in conventional medicine without the insurance help. So, what that means is we run up credit cards, we sell things, we refinance or take second mortgages on our homes, we file for bankruptcy, but we just don’t worry about the money. Cuz really, what else can we do??? We have to really just rely on God to provide. If I thought I had ever walked a faith walk before, I didn’t know nuthin about nuthin then!

So here I stay, putting one foot in front of the other, trusting in the miracle. And oh, the generosity of so many of you! I just am so humbled that total strangers would send their hard-earned money to help someone they’ve never even met just because a friend of theirs asked them to by sharing my story on Facebook. Simply amazing! I have had a couple of friends donate, then put out a challenge to their friends to match. I have been just stunned at the love I am being shown financially, from friends and familly, yes, but those strangers!!! That just takes my breath away!

Here we are after getting everything moved into the new place! With my new do. Not a do I prefer, but oh well.

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Week 3

Posted: April 16, 2012 in Breast Cancer
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We met with our naturopath this morning. What an awesome woman. In the midst of my bad day Saturday, I emailed her after I shaved my head and she added me to her schedule first thing this morning. We had a great meeting. She had been online researching appetite and cancer and had a couple of things she wanted to prescribe for me such as Ghrelin, a subcutaneous injection. Also, a prescription for Marinol … that is a synthetic version of THC. Now, the natural substance is by far more effective than the synthetic version. But the natural version doesn’t work for my particular anorexia situation any more, so I hoped perhaps the synthetic version would work. I am upping my curcumin and glutamine doses as well.

We are also going to stop all the pain management and electromedicine machines right now so I can focus on IV therapies. We have got to get me alkaline and we have got to get my appetite working or we are fighting a losing battle with the cancer. As it is, they all overlap and any one of them can kill me. So we are going to up my IVC to 100gms twice a week with alpha lipoic acid before the bag to potentiate it. We are going to add some glutathione for my liver and, if we need to, resume IPT. Of course, if we have to do that, don’t know where the money will come from, but I can’t worry about that right now.

I am also going to order and start a product called DCA that Russia is allegedly declaring a cure. Doesn’t take much and I will be ordering that tonight. So the saga continues …

Into the desert …

Posted: April 9, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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Toward the end of my hospital stay, when I was getting more awake too the whole experience, I was left with serious feelings of abandonment. I mean, here I had been following and serving Him all my life and this is is the result????? After believing His promises for so many years (I honestly believed I was healed of this cancer and would never have to deal with it again), and then I metastacized. How did this happen? If His Word is true, and if He doesn’t lie, and if He truly does love me, how the hell did this happen??? And even worse, if the healing promises are a lie, then what else in that Bible of mine is a lie? I mean, either it is all true, or it ain’t. Many folks like to pick and choose what they believe, and don’t believe in the BIble, but I don’t see it that way. If there are any promises in that book that are not true, then how are any of them true at all? See where I’m going here? If there are Biblical promises that are not true, then how do we know which ones are and which ones aren’t? So then, it was only a skip away to wonder if I’m really saved and going to heaven? See, if one thing isn’t true, is that thing true?? And how do you know? To me, either it all is, or it all isn’t.

I got so angry with God during that time. I railed, I cussed, I shook my fist, I screamed, I cried. I pretty much flung a big, fat temper tantrum. And I haven’t heard not one peep out of Him ever since. Now I know that He has big shoulders. I do not, for one minute, believe that He has turned His back and doesn’t love me any more, but I did pretty much feel like “if this is love, who the hell needs it?” My beloved mother used to say that if this was being the apple of His eye, she didn’t need that shit. Yup, my mom’s words. I was kind of feeling just like that.

This was not the first time I have been end-stage. I had been that way before when I first met Kurt Peterson. I nosed up and got back up to cruising altitude. But this time, I had been in a nosedive with my tail in flames, both engines burnt totally out. I came so close to my own demise that I was hardly aware of anything going on around me, even though I was conscious. My brother had arrived for a visit two days before going into the hospital and I don’t even remember his arrival. I don’t remember him getting out of the car, my hugging him, or even where I was in the house when he arrived. This was totally different.

As I had more and more realization of what had just happened to me, it just did not jive with my understanding of the character of God. There is no way I, as a parent, could stand idly by while my daughter suffered, cried, begged, screamed, mourned … I am aware He has done that before with His own Son … but He is God and I am not. This time, He watched me come really close to leaving this plane. And I thought it was torturous and sadistic. I mean, if it had been merciful, He could have shown me a little piece of what was ahead … one day. Or take me altogether. Shoot, I was right there. Many people have had that experience, and they come back here knowing what glory is there waiting for them, so they no longer fear their passing. I didn’t get tossed that little tidbit. Like how hard could that have been? I was right there … on the brink … how hard would it have been for GOD to either show me what was waiting there one day, or just take me on home so I would never have to experience this terror again?

And I was angry … oh was I ever angry! After all my trusting, believing, standing, praying, etc … this was what I got for my efforts? Screw that! So that’s where I was … pissed at God and He was just letting me be pissed. After all, He knew, before He ever created me, that I would be such a one … so if I didn’t cuss at him, did I really think I could fool myself into believing that He didn’t already know about it? Of course he did … He knows my every thought … created me to think the way I do … so if I can’t talk to Him about it, who can I talk to? So I did … but He didn’t see fit to answer. Thinking as a parent, neither did I when my daughter was flailing in the floor screaming. Then again, she was screaming because she wanted a cookie and I said no. I was screaming because I needed His presence … His reassurance … I mean one of the Biblical names for the Holy Spirit is Comforter … where is my freakin’ comfort???!!!

But in the desert, there is no comfort; there is no shade; there is no nourishment; there is no hydration. Just the stark, blistering sun, big spiders, cool lizards,and chilly nights. And dirt … lots and lots of dirt. But certainly nothing that I find life-giving. And I was suddenly smack in the middle of it.

Fast forward one year … because it was last Apr 11 when I was admitted to that hospital … my hair started falling out late last week … a week after my last chemo. I’m not sure how far it will go as I didn’t let it fall out naturally the first time. I knew that drug would take all my hair, so I took control of the situation and shaved it. The second time, I only expected thinning, which is what I got, but I stopped chemo in July and my hair was at its thinnest in Oct, so I have a delayed reaction of sorts. Given that, I have no idea what to expect … definitely very thin, but possibly all the way bald. It is coming out by the handful and much more painful than it was last time, so I don’t think it’s looking good for the home team. You will be watching it happen in pics.

Here is a shot of me in the ozone sauna that I will be doing later on today.

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Second day is done …

Posted: April 3, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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Today, I had another busy day. I swear, that place is like Disneyland … you start one place and every time you turn around, there is someone else coming to take you for some other therapy … acupuncture, HBOT therapy, some electro device called The Matrix, IVC, and major autohemotherapy (a safe way of administering ozone into the blood) are the things I know I’m doing this week.

We haven’t been able to look at our protocol/plan yet because they added us on, last minute. They’ve been busting butt getting me scheduled, for five days a week, for the next month. That is all worked out now, so we will get the plan tomorrow.

But today was another blessedly wonderful day. I started in the infusion room getting a small bag of alpha lipoic acid (ALA). Then I got a 75gm bag of IVC with K3 in it and nothing else in there. Perfection! At the other place, they would give the C, then the ALA … but here they give the ALA first because they say the ALA can potentiate the IVC much like insulin can potentiate chemo. What?????? How cool is that!!! Do they do that at the other place? Nope. There are just so many things they do here, just small things, that can make so much difference, but in my opinion, the folks down the road will not be taught. They don’t want to be taught. Especially by someone who has no title before her name or initials after her name.

But that’s over now and the folks here are so corroborative. I swear to you, if they took Medicare, I would seriously consider moving here just to be near this place. They are quickly becoming my family … I’m falling in love with every single one of them.

Anyway, I digress …. I got the ALA, then a big bag of C. They run it wide open here, instead of over 2-3 hours, if you can take it. For me, the ascites issue has to be considered. So we started a little slow today with the C, but then that bag was just not going down. Since I’m pretty sure I didn’t hit therapeutic blood levels at the other place, so when the bag was about 1/3 gone, I told her to let it rip and I’d holler if I needed it slowed. Wow, when it’s running that fast, you certainly can feel it! Who knew Vitamin C could make you feel so loopy????? But, as I figured, my belly is a bit large tonight. So we’ll have to try to figure out where that fine line is between filling me up with fluid and reaching the right blood levels.

After the IVs were done, we ate lunch, then I went on the Matrix machine and got some acupuncture while I was at it. Then I spent about 90 minutes in the HBOT chamber. It’s cool … it’s big enough that I can sit up in there if I want to. I never knew this before, but for some reason God is nowhere near that other place …. but guess where He does live? In the HBOT chamber!!!! Who knew? And I will tell you more about that tomorrow if they give me enough time.

Holy week … a brand new week

Posted: April 2, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
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My first day at Progressive. Got off to a little bit of a slow start because I was an unexpected add-on to their schedule this week. But the vibe here is so wonderful that I couldn’t have cared less! Before long, I was escorted back to my first Hyperbaric Oxygen Therapy (HBOT) session. I spent an hour in the chamber. I guess claustrophobic folks might have trouble with it, but it was much more spacious than, say, an MRI or CT scanner, but it is totally enclosed. There was enough room to where I could almost sit up, so it didn’t feel too enclosed. It was much like being in an airplane in that my ears popped while we were starting up, much like an airplane taking off. Same thing when we were done. Quite nice, really. I just plugged my earbuds into my iPad and listened to Darlene Zschech and had a wonderful time.

When that was over, we were served lunch. The organic chef was wonderful. She had a chicken-based veggie soup on tap and since I have such a hard time with food repulsing me when it’s in my mouth, she pureed it for me and it was so good. I was so happy that, though I couldn’t eat much of it, it wasn’t stressful for me!

Then I went back for my first IVC with them. It was just a small bag, but we will up that probably tomorrow. They had planned for me to have an ozone sauna but then we realized that since my port is going to stay accessed for the week, I couldn’t get in a sauna at all due to the sweat. Can’t get moisture behind that tape. So we figured we could sauna me first thing on Mondays and last thing on Fridays, before the access me and after they de-access me. They wanted three times a week, but two will have to do. Those port needle sticks hurt. And though we could spray some stuff on it to numb it, not real sure how well my skin would hold up, in that one small spot, being accessed all week and stuck 3 times each week. So no, we won’t be going that route. Not as big a wussy as I am!

One of the times I was taken to a different area, the gal was helping me get settled in. I was getting ready to hang my IV bag on the hook and she stopped me. She said I need to slow myself down and let her do it. I started laughing and told her, shoot, I had been traumatized for the past seven weeks where I had to fight for every little thing and hope to God they had it right because I saw them making mistakes all around me all the time. And lest you mistake, that wasn’t because the nurses didn’t know their stuff. It was just that the word had not been passed from on high in time for the nurses to get it done. This place? Oh no. They’re all about keeping you comfortable and keeping your stress levels down. Everyone there just goes out of their way for the patient.

I think it’s so cool that this miracle came through for me and my friend on the week before Jesus took that beating and those nails in His hands for my healing, as well as everything else. How perfectly timed is that? Might not be for everyone, but I love the fact that there is worship music in the infusion room … works for me!

I didn’t really get to look at my protocol today, but I’m supposed to tomorrow, so will have more of a feel what my weeks will look like. So tomorrow I get an IV first thing and we go from there. One of that gals I met at that other place was having just as much trouble there as I was and they weren’t even cutting her a good deal, so I encouraged her to at least have a look at the place. She did last Friday. She was there for treatment today! I had told her it was night and day different … she disagreed. She thought that was an understatement! So here is me in the HBOT chamber this morning. Not a great shot … was a bit dark in there … but hopefully you can see my happy smile!

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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!

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!

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