Fluid drained and calories onboard!

Posted: May 26, 2012 in Breast Cancer
0

Finally, finally, FINALLY I got this fluid drained and I have my IV nutrition back (TPN)!  The fluid was drained by a procedure called paracentesis and it was done this past Monday afternoon.  Remember my post about my liver biopsy?  They couldn’t sedate me well enough because of my blood pressure.  Well this time, my blood pressure was just peachy

John and I at PF Changs

but I had been taking a drug called low-dose naltrexone and it blocks the opiate receptors.  Typically I would’ve stopped taking them a few days prior, but I had taken one Sunday night, not realizing my paracentesis would be so soon!  So they think I have an even bigger tolerance than I do.  Guess I’ll have to tell them about that next time!  Anyway, we got in there and the radiologist comes in and starts looking, with ultrasound, for the best spot from which to drain.  He took a look at me and said, “You want to get that drained?  Just how much fluid do you think you have there anyway?”  I told him probably about 5 litres.  He asked if I was a gambling woman and I said, in this case, absolutely.  And the bet was on.  He numbed me then put the drain tube in, which he had to do rather forcefully … that resulted in a very loud owwww from me (I am not a silent sufferer … he is lucky I didn’t grab him by the collar and threaten him within an inch of his young life).  Along about the third bottle, the tube slipped out!  He said he had to do it all again and I told him he better find some bigger, better drugs before he starts that foolishness.  Don’t know what they brought back with them, but the second time was much better!  When the tube slipped out, however, we only had about three litres removed and I mentioned that he had won, danggit!  He said, “Not quite yet I haven’t,” and that’s when he started the second round.  We got between four and five litres out of me … there is still a bit in there, but oh is it ever better!  And bonus for me … I won a bet and got to look at serious McDreamy hair (gotta say the man had great hair), and lost 10 pounds badda bing, badda boom!  Wouldn’t advise that diet to anyone, but now my heartburn and reflux is all gone, thank God!

As for the TPN, this time it is only about 25% sugar this time rather than 70%, so that’s a big plus.  We had them mix a low-glycemic variety and they brought it over last night.  We are having to pay what TriCare doesn’t, right now, until my VA PCP writes an order for it, at which time, the VA will foot the bill, praise God!  Given John’s vast experience changing out my TPN bags, from my stint in the hospital (that lasted about three months), and again for the 3 weeks before I went to Georgia, so he is pretty well-versed in the pumps and tubing, and how they all work together.  So he was able to figure out this new pump and get me started before we went to bed last night so I could get calories while I slept.  I woke up two pounds heavier this morning.  The balancing act for me is, is it fluid or is it real weight?  So the only way I can tell is to take measurements from right below my rib cage, waist, navel, below navel, hips, and thighs.  The fluid can fill the first four but not the last two.  Those hips and thighs don’t fill up with fluid, but they sure do carry fat!  Too early to tell if it is really fluid or calories, but the next few days will give me more of an idea.   But at least now I don’t have to stress about not getting enough calories, or the right balance of proteins, fats, carbs.  It’s all done for me and whatever I can eat on top of that is a bonus and keeps my GI tract functioning.  In about 15 minutes, a home nurse will be by to … well, she thinks to get me started on my TPN.  She will be pleased to know her visit here will not take long.  Anyway, she is to get us started, then she will come back 48 hours later to draw blood to be sure my electrolytes are doing ok.  When one is malnourished, and they start TPN, their electrolytes can get really wonky so better safe than sorry.

I had already started my Tamoxifen (a drug that fills the estrogen receptor on the cancer so estrogen can’t fuel it) a week ago and, together, we decided to revisit the chemo drug I used last year … Taxotere.  We didn’t ride it all the way to failure last year, and Tamoxifen takes 2-3 months to kick in, and my circulating tumor cells are rising rapidly.  Currently they are as high as they were when I came home from the hospital a year ago, so we need to move quickly.  I am not as sick as I was then, but I’m not far from it and my numbers are even closer to it.  So we will, once again, attempt to use Taxotere to hold it back while the hormonal therapy takes hold.  We drew a CBC yesterday to see where my white counts are because as soon as they are back up to normal limits, we will start the taxotere.  It’s not too toxic on the bone marrow.  And there is another one to fall back on … Halaven.  That one isn’t too toxic on bone marrow either.  I have some other, more toxic options as well, should I decide to use them.  On a more somber note, I asked for a referral to palliative care.  Now this is not hospice.  Hospice means you are no longer pursuing treatment.  Palliative care folks are supportive … they are typically on call 24/7, the one I’m looking at has its own pharmacy so if I need pills reformulated to sublinguals or something, they can.  And the way things can turn on a dime, it could easily happen that I could start heading south within days and I could be too sick to do consults and interviews and such.  So I wanted to be able to choose an organization while I still feel up to the task.  I am not giving up here, and I hope no one sees it that way.  The referral was for palliative only … not hospice.  My dr looked at me funny when I asked.  He said he thought that was a bit premature.  But when I explained my reasoning, he put in the referral … especially since my explanation consisted of, “Well what am I gonna do if something goes down in the middle of the night?  Call or email you?”  Yeah, that got the job done!

All home and settled in!

Posted: May 19, 2012 in Breast Cancer
Tags: , , , ,
10

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.

Putting Georgia in my rear view mirror …

Posted: May 10, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
Tags: , , , ,
10

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
Tags: , , , , ,
3

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.

20120507-210655.jpg

Week 5, Round 3 …

Posted: May 1, 2012 in Breast Cancer
Tags: , , , , ,
9

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.

20120501-170418.jpg

We just want some normalcy …

Posted: April 27, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
Tags: , ,
10

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.

Week 3

Posted: April 16, 2012 in Breast Cancer
Tags: , , , , ,
0

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 …

Older Entries