Posts Tagged ‘metastatic breast cancer’

Last week, we took a little jaunt to Breckenridge. It is a lovely little ski town but our resort was at 10600′ elevation. I live at 8500 so I wasn’t overly concerned. But 5 days in, I was sitting, putting on my makeup, and suddenly could not catch my breath … and I honestly thought I was going to lose consciousness. The very next day, we left thinking that getting off that mountain would make it all better. It did make it better, but not by much. Since it took 5 days to start in on me, I thought nothing of this. But after being home for 4 days, without much improvement, I called my onc’s nurse and she said I needed to go to the ER, so I did. But I specifically asked her if the Megace could’ve caused this trouble and she said she has never seen anyone have a problem with this drug. Needless to say, it is those absolutes … never and always … that always get me. She said she has never seen it happen … well, that sealed the deal. It did happen. Now if I could just get them to tell me there is absolutely no way I could possibly live to be an old woman. That would bring my healing forth in a NY minute!

A mere 6 hours later, after chest xray, blood tests,cultures, urine samples, flu tests, and a chest CT, they finally had a diagnosis. Sure enough, I have two lungs with multiple clots and dead tissue as well from the damage they caused. So they admitted me to start me on Lovenox injections twice a day until my blood thins enough to do the Coumadin, which may be for the rest of my days.

And needless to say, the Megace is now discontinued, so I have no idea what will happen to my fledgling appetite without it. So now I am backed into a serious corner … oxygen or nutrition? Can’t exactly live without either one. So even though the cancer is backing down, now I have this bloody mess going on. God help me, I just feel like I can’t take one more thing. Feeling just a smidge devastated by all this! Sorry for the downer, but hey what can I say? I’m pretty damned tired of it all, myself!

I promised you a post on my hypnotherapy, and I’m nothing if not honest (much to most peoples’s chagrin). I have been realizing, for years now, that there is a significant portion of my childhood about which I have only isolated memories and no sense of my emotional condition at all until I was about 12. And it was as though I just woke up and, boy, was it ever on the wrong side of the bed! I was one angry girl … Angry at everyone. And no memories to clue me in. I have, for the past couple of years, begun to heavily suspect that, for me, the path to wellness has to be through my past issues.

This appetite thing has been going on for almost four years now and, until this Megace, food has just repulsed me altogether. Cancer diminishing, but still can’t eat. That is trouble and WTH? Through my therapy, I have learned that a fetus in utero physically reacts to the mother’s energy. My precious Momma was desperately trying to save her marriage and I was the Great White Hope. Add to that that she only ate 900 calories a day to keep her figure and you have a malnourished infant with the umbilical cord wrapped around her neck twice. Somehow, I am coming to realize that I have come full circle … From not being nourished in utero to not being able to nourish myself now. Somehow it seems the key for my healing is to unravel these issues and to convince my inner child that she deserves to be here and has a right to be. It is really no wonder I was born with my fist in the air.

But despite our best efforts at trying to peel back the haze over my childhood memories, my inner child wasn’t talking. Me being the hard-head that I am decided that I don’t have unlimited time for therapy, so we needed to quit pussy-footing around here. So she referred me to a local hypnotherapist named Kay Atwood with http://www.hypnosis-health.com/. At first, my therapist thought that might be too harsh for my inner child, but what I wanted to do was to go back into what few memories I do have, with my adult self to intercede for the child who had no voice. She gave me the green light for that, so off I went.

Hypnosis always sounded like some woo-woo thing to me. I mean, how on earth can someone be made to bark like a dog, in front of a room full of people, and not even know they’re there? Well now I know differently. You are never unaware. You just don’t really care. Your mind is very focused but your body just feels heavy. So the hypnosis state is really just a meditative state where you are highly suggestive. You are still fully in control and no one could plant something alien into you and you be ok with it. Many of my sessions have involved conversations. But it is an Alpha brainwave state which is where we are right between being awake and being asleep. This is where we are most suggestive.

So after all the things I had tried, with so very little success, I wasn’t too hopeful. I honestly didn’t believe it would work for me, but it was the absolute last thing I could think to try. It was a very relaxing experience. She takes you down by various techniques, but mostly we visualize me going down a flight of stairs and, with each step down, I go deeper. At the foot of the stairs is a doorway that leads to my safe place which I have chosen as a lovely spot we found trail riding in the mountains last summer, by a river. And while I am there, I have dealt with all sorts of things.

One example … My father, God bless him, was as flawed as the rest of us. His demon was alcohol. As a result, my growing up was rife with conflict, strife, yelling, anger … I never even knew he drank till I went to college and my Mom told me. So I was on a hammock in Maui during this particular session and she had him enter into my space. I saw my father as the young, vibrant man he had once been … Rakish and handsome. She had me envision me saying anything … Everything … That I had never said to him because I would get in trouble or whatever. So I did that. Then she had me envision him saying what he needed to say. Then she told me how he never meant to hurt me and that he was going to leave me with the only gift he could give me now. She had me envision him holding a vacuum cleaner attachment hose and me guiding that hose to the places in my body that still have cancer and sucking it all out. Then he reversed that vacuum and sprayed that stuff into the universe. And then he left.

That night, I began to eat. Now not nearly enough still … But it was a start and probably doubled what I had previously been consuming. And then came Megace so I am able to eat three meals a day right now. We have also done some work around my mother. But the last time, I think we really uncovered something significant. I knew that I had not been seen for who I was as a child my mother dressed me up like a little doll several times a day. Understandable … I was the only girl child of four. But I wanted to climb trees, catch craw dads, and play GI Joes! Every bit of femininity I have, I owe to my precious Momma, to include my undying love of shoes! However, not seeing a child for who he or she is can have its own set of issues attached to it. More on that issue next time.

Today the highs did not get out of the 30s in the mountain town where we live. Wood stove cranked up downstairs and I’m all bundled up trying to stay cozy. I just had to break down and buy a couple of size 4 pairs of jeans, which believe it or not, really hurt. Most women would be ecstatic but if I had worked for it, that would be one thing. Anorexia is totally another thing.

So I saw my oncologist last week and boy was he pleased! My circulating tumor cells test was 360 a mere 5 months ago. Now it is down to 7. Now granted, anything over 3 is kind of a bad situation, but still … That is so much less cancer floating around in my bloodstream than there was not so very long ago. Obviously we have the cancer on the run, but how can I survive if I find food repulsive? No amount of MMJ would change this, and hasn’t, for almost 4 years now. I had experienced some improvements … Probably doubling what I was eating … Through hypnotherapy, which has been a very healing and interesting process. But it still wasn’t enough to stop my TPN nutrition at night.

So when I saw my onc last week, he finally sat down, crossed his legs, and started discussing a drug called Megace (megestrol acetate). It is not a drug I would just take willy nilly as i do not believe in synthetics when natural is … well … natural. and especially hormones. And this is synthetic progesterone. I swear, I have steered so many people away from synthetic hormones. This cancer this continues to be an exercise in humility. Sometimes ya just gotta do what you gotta do. Anyway, this drug used to be used to treat cancer back in the day after regular hormonal therapy failed. But gals wouldn’t stay on it because it made them gain weight. So now that is how it is used … in lower doses for appetite when there is none.

I have known about this drug for years, but with my cancer raging out of control, the risk of thrombosis from it was just not worth the risk for any dr I have had in the past several years. But now … Now we can talk. He and I are both convinced that the fluid that is again accumulating in my belly is solely from the TPN and not from a cancer process. So he handed me a prescription, told me to fill it, and get off that TPN. So I filled it the next day and started using it. Omg … Aaaaaaaaaaaaacccckkkkkkkkkkkkkkk!!! No one told me it was liquid! I mean, who makes liquid meds for adult folks who can swallow pills? Jeez! And it is the most bitter, chemical tasting mess I have had the displeasure of ingesting. I honestly wasn’t sure if I would handle a teaspoon of that mess once a day. I know … Big baby, huh? But remember, almost everything I put in my mouth lately made me gag and puke even if it didn’t taste bad. So I waited what I thought would be a couple of weeks for it to take effect … If it did anything at all.

Holy crap what a difference!!!!! After three or four days on it, I started eating regular-sized meals and I can’t even describe the joy it brings me to be able to put a bite of organic sweet corn in my mouth and enjoy the flavor of the ghee blended with the sweet crisp of the corn. It has been such a long time! So I am pretty much eating 3 meals a day now and working on backing down this TPN. Would rather see a little size come on me first, but I am getting fluid again and really wanna be done with that. So if the TPN truly is the culprit, I need to be able to get completely off it before I drain again. Currently, it is an experiment. We have backed me down to every other night to see what happens. But we are going to Breckenridge in a couple of weeks and I want to be fluid-free for that trip for two reasons … Amazing restaurants there and so my torso won’t look all sausagey, which is a look I have come to despise on me.

So over the next week or so, I promise to try to make the time to update you all, in case you’re curious, about the hypnotherapy thing … It is much different than what I expected … And about an amazing session I had with one of my energy healers, Penny Guinther, and introduce you to her. Se is just as amazing as both Kurt Peterson and Kris Kraft, in my opinion.

All I can say I I have no idea why I am still here, or what God has in store for me moving forward, but whatever He is up to, it sure ain’t boring. From my perspective at this moment, it is very exciting. And it feels hopeful for the first time in a year or more. More to come …

So I was incorrect with how much weight I lost with my most recent draining … It was really only 13 pounds; not 20, thank God. But I sure do have a flat belly now. Oh yeah … That’s what it used to look like!

When I got up this morning, I measured first thing and so far, so good. No fluid back yet that I can tell. Now, I do feel like I have been pummeled from liver to pelvis, but there is no more vomiting, no more snakey sensation in the gut, food is a possibility, and I can move around freely again, albeit gently.

Since I was feeling better, I scheduled a lesson for today with Taffy and Gunner. Sore as I was, I figured I couldn’t get in the saddle myself, but I could sure learn from her while she rode him. That went really well, but I was quickly discovering that watching was harder than it looked! I wanted up there on his back!

So since he was being so quiet, up I went. It was so good! All we were doing was keeping him soft and collected … Large circles, small circles. And the best part was that I left that barn still feeling decent, which has not been the case for the past many days.

I have two more lessons scheduled for the weekend and I am desperately hoping to get out on the trail. Pikes Peak has about 6″ of snow … Summer is rapidly going away … Need to take advantage while I can! But tomorrow is my birthday, so I’m meeting my BFF and getting my hair colored! I was supposed to have been out of birthdays a few back … But since I’m still having them, I heartily enjoy them!

So here I was, camping, horse shopping and feeling better. But while on a horse shopping trip, I had to run my TPN for 24 hours which I usually don’t do due to fluid accumulation in my belly. And sure enough, that fluid started coming back in. Just when Gunner was ready for a trail ride, I am bedridden again. Vomiting nearly every day, painful cramping every day and I never know when it is going to hit.

This morning, I got up, called my oncologist’s office for a referral to be drained again and, just now, the hospital called and has me scheduled for tomorrow afternoon! Thank God for a small town sometimes!

So please pray, send energy, positive thoughts … I’ll take it! I am hoping for an experience by similar to the last time when I experienced no pain afterwards and felt like a whole different person!

20120823-175915.jpg

For the past couple of weeks, my husband has been driving me all over the state looking for my new horse. I must have test ridden 15 horses during that time. Last Saturday, I found him and yesterday my new equine partner came home to live with me. Gun Running Ridge Runner (Gunner) has arrived!

It is kind of funny how it came about. I saw him on Dreamhorse and called about him, but during the course of the conversation, the owner thought one of her other horses would be better suited for me, so we never discussed Gunner. But when we got there, and saw the other horse, he was a bit lame and poorly conformed, so we decided not to torment him by riding him. She just happened to mention that Gunner racks. That got my attention because that is the smoothest gait ever!

So she went and caught him up. He is far from finished, but he is well-broke, for sure. His gait is the smoothest I have ridden, aside from my Patch pony, who goes to his new home a week from tomorrow. He also had a damn good set of brakes, so that made him OK for me.

When he arrived, yesterday, I watched closely as he got off the trailer and saw his new surroundings for the first time. He was alert and curious, but not screaming, snorting, or flagging his tail, unlike the other two I had vet checked. He calmly walked into the barn and into his new stall. But he is skeptical … boy, is he skeptical.

Yesterday, he was very aloof. He didn’t even want me to come up to him to scratch him or halter him. I tried treats like carrots and apples, but this poor pasture boy didn’t even know what to do with them. He certainly wasn’t convinced it wasn’t poison. But before I left, I got my foot in the door. He knows what grain is … and he definitely likes that.

So today, he was a bit more curious and interactive. He came right up to the stall door when I approached and he followed me as I walked past him into his area. He was still skeptical though. I put a chair in there and just sat there, with a little grain in a bucket in my lap, and just let him come to me. It was so funny. He wanted that grain so bad, the fat boy (who has just entered fat camp), but he wasn’t sure about me. So he would stretch his neck like a giraffe to try to get that grain, but not get too close to me. But he got over that quickly.

So then I noticed the flies were leaving welts on him, so I put the halter on him and took him out of the stall, which he did willingly. He stood fine for grooming but he was certain that fly spray was going to kill him. So we will have to keep after that until he realizes no harm is going to come to him. Then, I just walked him out of the barn for a few mouthfuls of green grass, which I am sure he is missing right about now. I want him to understand that being with me is a pretty good deal.

When we were done with that, we went back to the barn and I sat in his stall a bit longer. He moved to the other end of the run, so I got up and walked around the run without paying any attention to him. I stopped at the fence with my back to him. I heard him approach, but I didn’t realize he was right behind me. I turned and scratched him and told him what a good boy he is, then left. Tomorrow will be more of the same. For now, I don’t want to make any demands of him. I just want him to develop positive associations with me. He is young … only 6 … we have plenty of time for work later.

20120824-144511.jpg<

This is a quickie post but I just wanted to let you all know that I saw my oncologist for the first time in a month today. He had my labs in hand and a young medical student in tow. He proceeded to tell her my “quite remarkable story.”. So it was cool to hear those words come from him. I had no idea he recognized the miracle I have been, three separate times now. He couldn’t get over how good I looked and stated I needed to stay on Tamoxifen forever, it was working so well. Of course, i did have on full makeup that he hasn’t seen in months. But perhaps it is the tamoxifen. Or maybe it is the energy work. Or the cannabis. But whatever it is, the proof was in the pudding when he cut me loose for two months and I said that was scary. I asked if I could get markers drawn again at the one month point. He asked why. I told him I always keep an eye on things. He then said I wouldn’t have to keep doing that. That this was not going to get bad again any time soon. From his lips to God’s ears! Still can’t eat, but hey … Other than that and it being at the end of a very long day and being exhausted, I feel pretty damn normal. Uh oh … That could be trouble!

Reblogged from Donna Peach:

Another article about a group that is putting the "fun in fundraising" for breast cancer reminds me yet again of the credibility problems we are having with breast cancer. We hear so many comments about breast cancer being the "good cancer" or "not the serious cancer" that many of us are questioning whether touting the success of mammograms and treatment is doing more harm than good.

Read more… 609 more words

I could not have written this better myself! I get so sick of all things pink and people just not getting that this disease actually kills people. I thought it was about stopping breast cancer ... Not making the fundraising participants feel all warm and fuzzy.

So things are finally starting to get better!!! As I mentioned, I got six liters of fluid drained off nearly two weeks ago and was so afraid it would come right back. Well, it has not. Admittedly, I am not at home right now, where I can take my measurements, so it’s possible it some has trickled back in, but I don’t feel like it has. I feel like a whole different person now. I am able to go for walks, though I am way too out of shape to hike. I no longer have reflux. Though I still cannot eat enough to survive, I am eating about twice what I was. We won’t discuss what all happens to a woman from the waist down, when she has that much pressure in her belly, but suffice it to say it also took care of more than just frequent urges. And OMG, my legs are so tiny without fluid in them …. bony, as a matter of fact … and they were starting to look pretty thick there for a minute.

More good news is that I am currently camping … spending time in my beloved forest like I could not even manage mere weeks ago. I couldn’t even get in and out of the camper. But that is all different now. With the exception of the fact that I still need IV nutrition, I feel pretty damn normal. Downright cancer-free! I am so grateful!

And the very best news of all is that, in the past three weeks, my CA27-29, the breast cancer marker, has dropped by 82 points and my CEA has dropped by 16 (the max normal range for this marker is only 3.5 so a 16-pt drop is pretty darn huge). So things are definitely moving in the right direction! This is the third time this has happened to me … the third freakin time! I keep spiraling downward, bed-ridden, for months … and then I do something (chemo or hormonals or energy work) and I get almost to remission before things start progressing again. This process can take a few months to a few years. I got a few months last year. I am hoping for something a bit longer-lasting this time.

I am so tickled that Friday, when I see my oncologist, who swore this fluid would come right back, I can tell him I was drained two weeks ago. It is at this point I would smile sweetly and bat my eyelashes at him … all 5-10 that I have left … because he keeps making these absolute statements with me. But dang, after working with me for three years now, you would think he would remember that my body rebels at absolutes and does everything in its power to prove them wrong. I don’t really know what all is going on with me, but I know no one can possibly predict what this thing will do and when. One of these times, it will be the last time. But not this time!

20120807-153623.jpg

20120807-153725.jpg

 

I know it has been a long time since I have updated this and many of you have pinged me with concern.  Sorry ’bout that.  But I have just had absolutely zero energy.  I am either hanging out on the bed with my feet elevated (cuz they’re like sausages these days) or in my recliner in the living room.  Yup, real quality life I have going these days.  It has been 3 weeks since Kris Kraft and I was really hoping to be feeling like a whole different person by now.  We are in close contact and he says that everything is on track and looking good.  However, I am the largest I have ever been with fluid … so full my abdomen can’t hold any more and it is going down my legs now.  I still can’t eat more than a couple of bites at a time, if anything at all.  Same goes for drinking.  When it comes right down to it, my body is not functioning to support life.  But we are keeping me alive … I guess by artificial means since I am on the IV nutrition and, without it, I would starve.  So where does that even leave me?  Beats me!

The plan right now is to get half this fluid drained off next week (oh please, oh please!).  I’m only doing half because my oncologist feels it will come right back in and it is way too painful to get it all drained if it is going to all come right back. So I’m going to do half and see what happens.  As large as I am, it will definitely give me some relief.  It’s like being 9 months pregnant but without the hormone cascade to support it.  Typically ascites fluid comes right back … but I have proved that not to be the case on three of the five drainings I have had. Let us pray that is the case this time.  I am a touch hopeful because my markers are finally heading in the right direction!!!  I am not totally certain, yet, of the cause. Was it the two rounds of chemo I had?  The last one was Jun 7, but I am still suffering some side effects from it, so is that what is knocking those numbers down now?  Or is it the Tamoxifen I have been taking for a couple of months now?  It really should work well for me and it’s about the right time for it to start doing something, if it is going to.  Or was it the work of Kris Kraft?  My biggest drop came 2 days after he worked on me.  Two weeks after that, I had another drop, but not quite as large.  That was last week.  So all in all, in the past month, my CA 27-29 (breast cancer marker) has dropped by 159 points, my CEA (general abdominal cancer marker) has dropped by 76 points (yes, it was that high), and my CTC (circulating tumor cells in the blood stream) has dropped by an amazing 323 points (yes, that was that high too).  So all that sounds wonderful, but without eating, getting rid of belly fluid, or being able to poop … well, these numbers don’t mean that much.

To top everything off, I started getting fevers and finally spiked one almost 102. We immediately called my palliative care folks (it was the middle of the night and they’re great for that) and they called my oncologist’s office first thing the next morning and before I knew it, I was there in front of him.  He drew cultures from both my port and an arm vein to determine if I had a systemic infection and, if so, where it was and what it was.  I had my first round of IV antibiotics then too. Thankfully, since I am on IV nutrition, I am in with a home infusion service.  So they sent up the antibiotics for John to just hook up to my IV line once a day. After the weekend, we had the results of the culture.  It was, indeed, systemic and it was, indeed, in my port and my whole bloodstream.  And get this … it’s resistant to all but Vancomycin (the big guns).  So now I am getting IV Vanco twice a day for three weeks.  For an alternatively minded gal, this is scary as hell!  God only knows what those strong drugs are doing to my insides and I can’t even eat yogurt or drink kefir to combat the raping of my gut flora.  After three weeks, I have a week before my next visit with my dr.  If I develop a fever again during that time, I am going to have to get this port pulled and pray that surgeon can pull a rabbit out of his hat and possibly thread a new port into the same spot cuz there just ain’t nuthin’ left, thanks to radiation back in ’99 and ’00.

View from my camp chair

We tried our best to get out in the woods camping last Sun – Weds, but that was just not to be either.  We got the camper out there on the pad and I could hardly haul my waterlogged self in or out of that camper.  I was just too weak.  I don’t know why I thought I had the strength, but I didn’t.  When I did feel like moseying out there, it was raining up a storm.  But hey, we need it so bad it is hard to complain!  They even lifted the fire ban in state parks so we could build camp fires there.  But noooooooo … this traitorous body won’t even let me enjoy being out in the woods for a few days.  And to top that off … my horse trainer informed me yesterday that she didn’t think my horse would be a safe mount for me ever again given my current state.  Let me tell you … I have had that boy for 12 years and that was not an easy thing to hear, but I already knew it deep down.  I just don’t know how to deal with it.  I got him when he was only 5 and I promised him he would never be abused again.  I love that boy.  I can’t afford to just retire him where he is and buy a calmer mount … God knows if I could, that’s exactly what I would do.  And I don’t think I’ll be looking for another horse until … if … the day comes that I can at least feed myself.  Until then, I just feel it would be remiss to bring another animal into my care.  So just another thing cancer is taking from me.  It has taken almost everything except my very breath … and now my beloved pony.

So I don’t know how great an update this was.  Perhaps after reading this, you wish you hadn’t.  I just feel so overwhelmed with everything that I just can’t seem to stop crying sometimes.  But I am still here.  And though hope is really hard to come by … trying to remain hopeful.