Posts Tagged ‘alternative cancer treatment’

Last Saturday, as most of you know, Waldo Canyon caught on fire.  That fire broke out between my town of Woodland Park and Colorado Springs and it was not far off the highway leading between the two, so they had to close the pass so the firefighters could use it for staging area, etc.  The only way from Woodland to the Springs was the back way through Teller County and it took 2.5 hours to get to my medical care, so I was so worried that my small intestine would obstruct while we were so isolated.  Thank God that didn’t happen.

But this fire was the scariest thing ever!  Early last week, that thing met up with tinderbox conditions, record temperatures, and 65 MPH winds, so it jumped two ridges and into a major neighborhood where 347 families lost their homes.  Thankfully, there have only been two fatalities, which is two too many, but they were still in their home when the officials were able to get in there.  Up our way, the fire line was probably only about three miles away, so we were placed on standby to evacuate.  All the motels were full, the campgrounds were full, because people had been being evacuated for days by this time.  But thankfully, they were able to hold that line, take us off standby, bring the Woodland Park evacuees home, and today they opened the highway again.  So life is slowly getting back to normal that way, but it has been so devastatingly emotional even though we didn’t suffer any loss unlike so many others.  I watched the flames engulfing those homes and it was like watching the Atlanta Burning scene in Gone With the Wind.  I just sat there and cried … just so much destruction and devastation.  Although 80% of the homes in that neighborhood were saved, the 20% that were lost looked like a bomb was dropped on the whole area.  Those homes are just vaporized … a pile of ash (not even rubble) … just nothing left … and they only had about an hour to evacuate before the fire was on them.  It was just that fast.  My heart so goes out to them and, if anyone else has a heart for them, there is a legit website selling some awesome wild fire tee shirts, 100% of which of the proceeds go to the fire victims.  There are some way cool, 100% cotton shirts, both men and women sizes, at www.wildfiretees.com.

Right in the middle of all this was my visit with Kris Kraft, energy healer, last Tuesday.  Being that the pass was closed, and he flew into the Springs, we had to get him 3 hours up here and 3 hours back.  Our daughter, Erika, was already in town, so she volunteered to meet him and bring him to us.  And if that wasn’t big enough, she stayed at here until he was done and took him right back down with her when she went.  Huge blessing and kudos to the kiddo!

He said the session was successful and that we were able to release a lot.  He says he has brought in a “new future” for me and I will sure take one of those!  I don’t much like what I’m seeing in my crystal ball these days the way things are!  The chemo side effects were still lingering a little, but they had diminished quite a bit by the time he got here.  I have felt just a little bit better every day since.  Was it his work or is it just getting more distance between me and my last chemo?  Too early to tell at this point, but soon.

And then, as if all this wasn’t enough, my husband and I hit a speed bump that knocked the breath out of me.  I don’t know how we will find our way through this, but hopefully with God’s help, we can.  Yup, those hits just keep on coming … I just can’t seem to even breathe for a minute without getting the crap beaten out of me.  Anyway, enough about that.

I saw my oncologist Friday and he cut me loose for another two weeks.  He feels that, by that time, we should have a clearer picture of if this Tamoxifen is going to be something I need to continue or not.  While I am getting even more fluid, and it is now in my legs because my abdomen just can’t hold any more, he says it will not harm me and that he was impressed that I have not obstructed.  He said he really thought I would worsen quickly (second time he has thought that and was incorrect … yup, I love to prove drs wrong sometimes), and was really surprised that I had not and that I should be OK for a couple more weeks without any additional treatment.  That is a good thing for a couple of reasons.  First of all, that will give me more than a month off from the cytotoxins.  Secondly, it gives Kris’ work more time to do its thing without the poisons conflicting with it.  Of course, if I go in there in a couple of weeks, and am doing a lot better,  he will claim it is the Tamoxifen.  This has happened once before.  I started Tamoxifen right before I saw Kurt Peterson for the first time and, right after Kurt, I damn near went into remission.  The onco says it was the Tamoxifen … I have always thought it was Kurt’s work.  So now I am right back in the same position.  Taking Tamoxifen and just got treated by a renowned energy healer.  But I don’t care which is responsible … God of course … but whether it is the Tamoxifen or Kris really makes no difference to me as long as I get better.

I seem to have been a little more active yesterday and today, despite my sausage-like torso and legs/feet.  I am one thick girl right now!  I am weighing in at 145 when my “without fluid” weight a month ago was only 113.  Sure wish it was real weight instead of fluid.  We discussed draining that fluid, but my dr and I both agree that would be too hard on my body.  So he suggested that I leave off the TPN for a few days … even though I am not eating … to try to balance out this fluid issue because it is directly attributable to the TPN.  It’s been almost 48 hours now, but I don’t feel any smaller.  Oh well … tomorrow’s another day.

In case you have noticed my lack of photos or graphics in the last few months of posts, I just ain’t posin’ for many pictures these days.  Hopefully before too much longer, I will have the energy to do all of the tasks I need to do to transform myself into something vaguely resembling a human female, and then I might take some more pics.  Until then, you just get to read.

They have moved my TPN bags up to 1800 calories now, and not a moment too soon. I knew I was getting fluid back when I started the TPN but damn … my insides hurt so badly after the drain … and now it is even bigger than before. More bad things are happening too, like nothing is passing. I was afraid I had an obstruction like last year, so I went to see my onc on Friday. There were no bowel sounds and that wasn’t good. He rushed me over for an xray to see if I had either obstructed or had a condition called ilius where the peristaltic action stops working, so nothing moves through.

It was not an obstruction this time …. just nothing is moving at all. So the only solution is to treat the cancer and hope it backs off like it did last year. So we started weekly Taxotere Friday, right then and there. But I have been vomiting every evening for four nights now because nothing will pass, so it has to come back up. So I can honestly say I could not survive right now without this TPN; I am so thankful to have it. Tomorrow we have to make the trek to the Denver VA Hospital to meet with several practitioners and dietitians there in hopes of making the switch from my paying for it to the VA paying for it. And honestly, with the pain and vomiting I have been having, I dread it so bad. The only upside is that it is first thing in the morning, so my bad times typically come a bit later in the day. Let’s hope there is no deviation to that pattern tomorrow.

My biggest fear is that, having been exposed to eight different chemo drugs in three months, nothing is going to work. But I have to try, right? I just don’t know how many more rabbits I can pull out of my hat, though. And I know this blog is turning into quite the depressing read and I just don’t know what to say about that. It is what is it and if it gets too painful for you to follow, I understand. It’s getting a bit hard to stay snarky and upbeat these days. But hey, if I can get this cancer to respond to some treatment, that will all change in an instant!

So anyway, that’s where we are. Something we did today was to buy his and hers cremation packages from The Neptune Society I know it might sound macabre, but I don’t want to leave this for John and Erika when I leave. It was very reasonable … less than $3k … and no matter where I am in the world, they will pick up my body, cremate it, and return the ashes to my family. There is a lovely cherry wood box that the urn goes in. You can choose to return remains to family or have them scattered at sea. So not exactly a cheery shopping experience, but it was something that, though distasteful, was very necessary.

I have my next chemo treatment on Thursday. God please let things be opening up by then. I am just not ready to leave my loved ones yet! Sorry the news still ain’t so hot, but at least I do have nutrition (especially since I can’t eat at all) and a plan of attack!

So we finally made it home Wednesday evening. Thursday was pretty much lay around and try my best to catch up on rest from that three-day trip. And yesterday, we drove down the mountain to see my oncologist, Dr Headley. We were hoping all the biopsy results had come in, but they had not yet. However, we did get a partial report. The tumor on my liver is strongly estrogen-receptor/progesterone-receptor positive so that means hormonal treatment options should work even better than chemo for me. The only downsides to that are the Faslodex injections I was getting weren’t working for me, which is why I stopped them in January. And it takes about three months for a hormonal therapy to really kick in, so what to do in the meantime? The other unfortunate news is that this cancer is still Her2neu negative. Her2neu is an oncogene that more aggressive cancers carry that can be targeted with treatment, making it very effective and not very toxic. Metastatic cancers can switch from being Her2neu positive to negative, and back again. So I was kind of hoping mine had done that so I could have Herceptin and, this summer, Pertuzumab, as options. Not this time around. It’s funny really. Only in advanced cancers would one wish for a more aggressive form of cancer so one could have more treatment options available.

Anyway, he ordered a full load of labs drawn so we can see exactly where I am right now, since stopping treatment at Progressive. He prescribed Tamoxifen for me to take … which I have mixed feelings about because it is carcinogenic itself, but I am not in a position, with such diffuse and advanced disease, to split hairs. If this cancer was an earlier stage, rather than the stage that will kill me, I wouldn’t be so quick to buy off on that. Ever since 1999, when I was first dx, I have avoided Tamoxifen. I did take it for about six months until I started spotting, then they took me off it. It can cause endometrial cancer and, since I had dodged the bullet that time, they didn’t want to take further chances. So I really never gave Tamoxifen a good run. I will be doing that starting today. But in the meantime? That is where the remainder of those biopsy results will come in handy. It looks at genetics and statistical probabilities to determine which chemo drugs will, and won’t work, for your cancer. When that comes in, we can then determine if we bring in a little chemo to keep things in check until the Tamoxifen kicks in. I will be seeing Dr Headley again next Friday, so we hope to have a full game plan then.

I will be getting my fluid drained next week. It will be scheduled for the first part of the week so at least that discomfort will be gone. I am still taking the DCA for this cancer so hopefully that will start doing me some good as well. And I saw my VA dr as well, so we can get me on Total Parenteral Nutrition (TPN) again to start putting back on some of the weight I lost while in Georgia. I have to see their nutritionist next week, hopefully the first part of the week as well, so we can get that TPN on board. But it was not all medical downer stuff yesterday. I also met my BFF downtown and we went wig shopping. I realized that I probably will never have my own hair again. It takes a good couple of years to grow hair back and for it to resume its normal texture. Do I have that much time? Especially without any chemo drugs to make it fall out? So I figured I would need to invest in a really good wig. There is a place nearby that does custom wigs to match the hair you had before you lost it. I called them but I have already lost my hair and now that I am not limited by my real hair’s texture, etc., I could have whatever I wanted. They needed to know what I wanted. So we proceeded to a local wig shop to try a bunch of stuff on. I asked for her high-end wigs so that I could feel the difference between the less-expensive ones I currently have, that drive me bonkers, and the hand-tied, lace-front ones. I have this really small head … I have always had one helluva time finding even a baseball hat to fit me and not come down over my ears. From my crown to the top of my ears, I am much shorter than most, so most wigs come down behind my ears too low. She found the one with the smallest cap and it fit like a dream!!! I liked it so much, I just went ahead and got it. It was probably 1/3 of the price and since I don’t have to style it myself, I can now have long hair again.

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.

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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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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I am finished with my fourth week at Progressive and the news is not good. My tumor markers and liver enzymes all rose and, even worse, my Circulating Tumor Cells (CTC) quadrupled in three weeks’ time. I have not seen a jump quite so aggressive and that scares the crap out of me.

So we discussed this with the team here and they feel we need more specific information about what we are treating. I am scheduled for a liver biopsy next Thursday. I am away from my home for damn near 12 weeks now with now no end in sight. I am getting sicker and, if this continues, am wondering if I can even get home. So I want to put out my disclaimer … This is not a pity party. It is just breaking down the reality of Stage IV cancer … And just in case you didn’t know, Stage IV is considered terminally ill. End of the road. Unless something else kills you, this will. You will never be free of it … You live in fear … No, prolonged terror … That it will jump into some horrific place like your brain or lungs. You live with that day in and day out. Every single day.

Stage IV disease is a whole different animal and so many people just don’t get it. Stage IV disease is so different than earlier stages. It is unpredictable and, more often than not, turns on a dime. One can be holding her own pretty well and be gone within a week. There are many who see me every day here and, even so, they still just don’t get it. I have explained, dozens of times, that I can hardly eat. I have no appetite. No interest in food at all. Something everyone just takes for granted … It is so stressful even trying to figure out what I can eat. It’s like having the tail end of a stomach flu and seeing that pizza commercial on tv and you can’t even look at it. Every single day. Every single meal. For the years now. I drink a 11-oz protein drink and feel like I have eaten Thanksgiving dinner. But still they tell me to just drink this powder or swallow those pills … And to most people, that’s no big deal at all. For me, it’s a huge deal and even though they deal with cancer patients, I have learned that unless someone carries a problem in his or her body, they just can’t comprehend. As the folks around here are saying, “We just want some normalcy …”. Nice concept, normalcy.

We have traveled to the other side of the country, staying at the mercy of others, with no space to call ours. We have spent all the savings we had and I am still not well. Our horses no longer get ridden, our dogs aren’t properly exercised because my energy levels are flagging more than they are increasing. My dog agility days are long gone. I spend all day, every day, in a clinic.

We love to travel, but can no longer even imagine going on vacation what with all the time and money we are spending on my treatment. And quite honestly, with as fast as Stage IV disease can turn for the worse, there is no way to plan for more than a month out, so last-minute travel is the only way we can do it now, if we ever get to again. We keep being told that fighting cancer is a full-time job. That may be, but it is certainly the only full-time job I have ever had that didn’t come with a paycheck. How normal is any of that?

We are now going to pay more than our mortgage payment for a motel suite because the family here wants some normalcy. Yeah, me too. Especially right now. I’m frightened, confused, and wondering if I will ever see my home again. I am having to ask for financial help from others. I gave up on normalcy five years ago. As anyone who lives with, or loves, someone with Stage IV disease can tell you, there is no more normal. You go wherever you need to go, spend everything you’ve got, do whatever it takes … Just to stay alive. And everyone else’s life just moves right along.

But hey, even though those hits just keep rocking my world, I will keep putting one foot in front of the other … As long as I have the strength.

I have now finished my second week at Progressive. The first week I had some major miracles that I didn’t write about because I didn’t want to jump the gun. Good thing too, evidently. They didn’t carry over into the second week. Now don’t get me wrong … it’s certainly not Progressive’s fault. They are just as awesome as they were the first day. It just appears that nothing is going to really work for me.

When I left Colorado, I had been on total parenteral nutrition (TPN) for three weeks because I couldn’t eat enough calories to maintain my weight, much less put back on the pounds I had lost. That hasn’t changed. I still don’t want food … not even the most nutritionally empty calories I can think of, like Krispy Kreme doughnuts. Don’t want ‘em, even if they were good for me. And folks seem to think that means I’ve given up or am just being difficult. Neither case is true.

Last week, I enjoyed a normal-sized meal for the first time in three years. Now that may not sound like a big deal, but let me try to paint you a picture. You know when you are just getting over a stomach virus and you see some pizza commercial on television and you have to look away before you gag? It’s like that when I look at any menu, no matter how tempting the fare. If the texture, consistency, and flavor aren’t just right, I gag. Salads and juicing? Forget about it! Every day of my life, three times a day, I have to stress and struggle to try to find a cup of something I think I can get down me that has enough calories to sustain me. That’s a really tall order. A cup of anything ain’t much and to try to cram 400-500 calories into that cup and get the perfect taste, texture, consistency … oh yeah, and enough hunger to even think about ingesting it. Does that paint a little bit of a picture for you?

So even if we kill all of this cancer, if this appetite thing doesn’t change, I won’t survive much longer. Now that I’m on Medicare, they will not pay for TPN unless I have failed … that means had it put in, and used it till it no longer worked or it was evident the desired effect was not happening … both a nasogastric tube (tube down nose into stomach) and a feeding tube (tube directly into stomach). Let me tell you, a year ago, I had an NG tube for three weeks. I couldn’t take one more day. By that point, it was excruciating and quality of life? Non existent. You can’t go out in public without frightening everyone because you have this tube hanging out your nose like elephant man or something. And it is uncomfortable as hell even to talk. So thanks to the government insurance rules, I can go from having a decent quality to what is left of my life, to having hardly any life at all, in the course of a half hour. (And we think government-run health care is a good idea? No one asked us disabled folks or veterans and we are the ones already under that system. OK political rant over.)

When I left Colorado, I didn’t have a belly full of fluid. I had a head full of hair … looked like a plush toy, but it was a full head of hair. Now I’m carrying probably six pounds of fluid and I’ve lost so much hair I had to shave my head this morning. I think that was the last time I’ll ever see my hair. It takes so long to grow back in, and even when it does, it takes a couple of years to return to its normal texture. I have no reason to think I will be here that long. We are out of money and, in the past nine weeks, I have had five different chemo drugs. What else is available for me?

Well, I can go home all bald and full of fluid and have a liver biopsy to try to ascertain my ER/PR and Her2neu status. Then I could try whatever chemo drugs I haven’t yet tried, but they’re brutal. What with the full chemo I had last year, and the five I’ve had recently, that is six chemos in the past year … and though last year I almost achieved remission, I still couldn’t eat. So if we put me into a sustainable remission, how long could I survive without eating more than 700-800 calories a day? Because that’s about all I can consume on my own.

I had also had a spike in my urine alkalinity last week, which was a major miracle as well. I have not been able to get, and stay, alkaline the whole five years I’ve been trying to get and stay there. Last week, I tested at 7.0 which was the best I’ve seen in me without drinking baking soda in water, which isn’t the best thing for you. But not this week. I’m back to being acidic again … even with all the oxidative therapy I’m getting, and they should be alkalizing the crap out of me.

Given both of these things: the continued lack of appetite and acidity, I just don’t know that anything will change the course of this path. Have requested a meeting of the minds with Progressive’s two NDs to reassess where we are and where we are headed. I just don’t know that they have any other tricks up their sleeve where I’m concerned, so though I’m not ready to die yet, I seem to be out of options … especially since we are out of money as well. Running out of hope here. Sorry for the downer of a post, but hey, y’all are along for the ride … and this is part of it.

Now you can get a glimpse of the woman behind the curtain. Everyone says I’m such an inspiration, so strong, so courageous …. nuh uh. I’m really just not ready to leave the ones I love, and not ready to go through that unknown process of dying. The little experience I have had it it was quite traumatic, and not one I am anxious to repeat. Now you can see that I’m no different than anyone else. When faced with my own mortality … when my back is really in the corner … I crumple like a well-worn dollar bill. So I just try to get through this weekend and hope I can get some time with both of those doctors on Monday which, as busy as that place is, will be miraculous in and of itself.

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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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.