On to the next …

Posted: January 27, 2013 in Breast Cancer

Well I saw my onco again after a week on no drugs at all.  My CEA has jumped from 70+ to 1117 and my CA 27-29 from 382+ to 666.8!  In one freaking week!  So it is on to treatment with no delay.  I start Aromasin (a steroidal aromatase inhibitor) as soon as my hubby gets home with it.  And I get a port put in to Wednesday and start Navelbine chemo Thursday, see the onc again Friday.

Alongside all this mess, my girlfriend from Seattle arrives Monday and will be here for all of it.  Some vacay for her.  😦  She’ll be sitting by my bedside, sitting in dr appts, and sitting at chemo, poor girl!  And she thinks she’s gonna get her taxes done while here.  Suuuuuuure you are!

Oh, and did I mention the MRI I have to schedule for my brain cuz I have had headaches for the past week or so every day and I am not a headachy person.  So they’re gonna rule out brain mets.

Have you noticed my cycle yet?  I tend to go down the hole about this time of year and the spend the spring/summer trying to dig myself out.  Let’s just hope I don’t have to dig too hard.  I went out to see Gunny today and I had no energy, much less balance.  I really feel like I’m losing ground.  Before, I could walk him down to the arena and work with him.  I don’t know if I can do that now.

So anyway, that is it for me for now.  Please keep me in prayer and positive energy for Wednesday and Thursday for the most part.  I have Kurt Peterson working on me 4 nights a week remotely, and Kris Kraft due to come back and work on me Feb 18.  Fingers crossed, as always!

 

So I have been feeling so horrible lately!  I just knew, what with my tumor markers rising, cancer was out of control.  Appetite nonexistent most of the time, so pretty malnourished.  And when I could eat, I would vomit pretty soon afterward, so that made me not want to eat for fear I would see it all again.  Last week, my oncologist expressed the same concerns as he ordered a boatload of scans for me:  liver, chest, abdomen, pelvis.  I know what he was expecting when I went in last Friday to see him.  But to his great surprise, he didn’t see that.  What he saw was lots of cancer, but the liver that had not been scanned since Apr 2011, had no new lesions.  Sure there were still diffuse mets all over the bones that were visible.  And still my abdominal mets did not show up at all.  Of course, it kept going on about my large-volume ascites even though I had just had 4.5 litres sucked out a mere 3 days prior.  Whatever.

In any case, my oncologist was ecstatic and wants me to hold off on tx right now.  In fact, he took me off all of my drugs in an attempt to give my body a cleanse.  Never had an oncologist suggest such a thing (naturopaths, yes).  So that’s where I’m at right now.  Labs again Wednesday and I see him again Friday.  I think he 2011-12-05_21-24-20_96is guiding me toward Navelbine chemo but I will need a port first.

And now for the loss.  I have made so many friends over the years of cancer living.  Most of them are internet-only.  But in a few cases, I have actually gotten to meet them face to face.  I have now officially lost my last long-time, face-to-face cancer friend.  She fought so hard for 5 years straight … all conventional.  And it finally wore her poor body out.  It was a liver failure and not from cancer … it was from a new tx drug and she had to live out her last days knowing that she had killed herself trying to save herself.  I am devastated.  I have two left … and they’re only from last spring.  Karen and Jamie, y’all better keep on keepin’ on!  I NEED YOU!!! Kim, my deepest love to you, sweet spirit!  You are now free of that diseased body, flitting and floating free of pain, sorrow, and part of all creation now.  I miss you, my dear friend … till the one day I see you again!!!!

 

Any of us could die any day …

Posted: January 18, 2013 in Breast Cancer

Please!  I just wanted to write about this kind of comment because I have reached my limit with it.  Of course we could all die any day.  Duh.  But there is one helluva difference between staring down the barrel of a loaded gun every single minute of every day, and the random thought that you might have a random heart attack.  And you can just say, “Naaah,” and move on.  Not so with us Stage IV cancer types.

We face our adversary, the very thing that is trying its damnedest to take us out of here, all the time with no relief.  And people really think that is how they spend their days?  Being that I used to know what it was like to be cancer-free and not worrying about dying every single day, I can pretty much guarantee it is not how any of them spend their lives.

And let me tell you what that does to a cancer patient when you say something like that … it completely invalidates their experience.  So when you are dealing with cancer patients, perhaps keep that in mind.  It will help us know that you are at least giving consideration to what we are going through and not just trying to make yourself feel better.

Ok end of tirade.  Thank you and hope you won’t be offended!

I think I have mentioned before how I lose friends every other week or so to this monster of a disease.  I have so many acquaintances, online, from all over the world, and quite a few of them I have actually spent time with face to face.  I met some incredible warriors during my time spent in Georgia this past spring.  Of the several I befriended, only two are still alive and their disease has spread to where they had to move on to conventional oncology.  Most recently were a woman with ovarian cancer and a man with pancreatic.   I have changed their names to Stella and Todd.

The woman had a situation very similar to mine with tumors in her peritoneum and fluid accumulating in the free space in her abdomen.  She called me frequently just to let me know she was still in the fight.  Well, the weekend before Christmas, I got a text from another friend saying Stella had passed on just the previous night.  Let me tell you, she was doing much better than I currently am.  She was running errands and living her life.  One evening, she went out to dinner and the, later that night, began vomiting.  She went to ER but her intestines ruptured en route.  Her heart went ballistic, she coded, and could not be revived.  Just like that, her precious spirit had left us.

I have been secretly fearful of this exact scenario playing out in my life.  Those tumors have only ever been visualized twice … both times in an OR and it was the surgery team that saw them.  Scans or MRIs have never picked them up because, though there are hundreds of them, they are too small to be seen.  But the photos taken last April when they had me on the table, sure looked big enough to show up.  Anyway, they are all over my large and small intestines, and my stomach.  And no one knows what those little boogers are up to.  In her case, they were eating away at her intestines from the outside until the wall of her intestine was thin enough to just rupture and that was it.

Many nights I have vomited, unprovoked, and been scared of that very thing.  How much vomiting is too much?  When is the time to go to the ER if I want to catch things before they eat into my intestines?  Could it be happening right now?  And now that it has happened to someone I loved, I’m even more scared!

Also, I have been having horrendous night sweats, so I went to my go-to conventional community, bcmets.org.  I typed Arimidex in the search block and the very first post to come up was from whom?  ME!!!!  Dated Mar 09.  I have used this drug before.  So I went to my spreadsheet to see what was happening with my markers while I was taking it.  Unfortunately, not one helluva lot.  So it didn’t really work for me then.  Not sure where that leaves me this time, but I will have markers drawn again on 1/10.

Tazzie Jump2And then, the day after Christmas, Todd left us.  Todd had pancreatic cancer and refused to believe the 3-month stats for that kind of cancer.  He survived for a few years, despite their predictions.  But ultimately, though he was with us for far longer than they expected, he did leave and he wasn’t even 50 yet.  So much loss after such hard battles.  And the devastation goes on for generations.  Cancer deaths don’t just affect the person who dies.  It takes everything from you, both physically and financially with nothing left to leave or give to anyone.  And then there is the genetic predisposition aspect.  All in all, it just sucks.

So it is bitter cold again here today … too cold for me to go play with Gunner.  So I sit here crying, zoning, writing, watching tv … when I would much rather have my “old” life back and be competing in a dog agility trial somewhere or xc-skiing since there is such wonderful powder at the ski resorts right now.  Or even Me & JR Sapper's Return Trailrunning all over town, shopping with my BFF and trying on stuff … none of which I have the juice for any more.  And I’m beginning to suspect it will never return.  My mother used to always say it.  She would say not to give things up because, once you do, you never get them back.  Now she didn’t mean material possessions … she meant activities and things you enjoyed doing.  And, in my situation, I can see her as being right on the money.  That is one of the biggest reasons that I have not given up a horse, despite the expense Gunner is turning out to be.  But I will not give up a horse.  If it is the last piece of my old life I can keep, dammit, I will.

Well, the Gunny boy has been rested for the past 3 weeks and I have been going out there, every other day or so, to just go into his area with the halter/rope and lots of cookies.  At first, he would stand at the opposite end of his run from me with his butt to me.  When I approached him, he would walk back to the other end to get away from me.  When he would let me put a hand on him, I would take the rope/halter and put it up over his neck and back and just rub him with the wad of rope so he got a good scratching from it (which they love).  Then he would get a cookie as I walked all around him, rubbing that rope all over him.  The other day, I went out there and he actually came up to me and didn’t run away when I put the rope on him.  I would give him a cookie then walk to a different spot and wait for him to come to me.  That happened a couple of times then he would stop coming to me, but would no longer move away from me when I approached him.

This past week, it was so different!  We have been seeing progress all along because us humans have suddenly become his only recreation since he can’t go out in the pasture with the other horses while he is healing.  This week, he was no longer coming up to me when I moved away from him.  Now he is following me and nudging me when we are standing still.  He is interacting with all of us now and that is just melting me into a puddle!

If any of you have ever had an animal with which you had to work for its affection, you’ll know how I feel.  When they come to you, all ready to be in your pocket, you kind of take that for granted and expect it.  But this horse was undoubtedly cowboyed in his young years and his feelings were never respected.  But he is soooo smart and polite and sensitive.  If you just stay calm with him and take it at his pace, he is so willing.  But he was pushed, I think, and pushed hard.  No more of that in his life for the rest of his life, whether I am here or not.  John will keep him when I’m gone and his heart is melting too.  From a horse who was skittish to even have you lift your hand to touch him, to a horse who is patting you down seeing if there’s anything enticing in your pocket for him.  Wow, who could ask for more?  Well more would’ve been if he had a clean bill of health now.

But the vet was out Monday for his second Shockwave treatment and she instructed me to start riding him after 3 days at the walk.  So I had him all saddled and ready yesterday.  He had been walking just fine and suddenly, when we got him ready yesterday, he started snapping that right hind foot straight out behind him again.  Something was still hurting.  So we called the vet and she returned this morning.  Turns out he probably has some rib injury and more bone splinters than we originally thought.  Nothing that shouldn’t heal with time, and the timing could not be better.  I am trying to get a protocol to start working for me and some days I just don’t feel worth a squat.  It is winter in Colorado and, even though the barn is heated, it is still cold as all hell.  So it’s not like I would be out on the trails even if he was 100% right now.  But if that hadn’t happened, that would’ve made it a perfect situation.  I guess I should consider myself fortunate.  I have had horses in and out of my life since I was in junior high school and have never owned a “money pit” until now.  But if you have horses in your life for long, you will have one sooner or later and I have finally hit mine.  I so like his brain, though … and I really think that he is going to be spectacular if I can just keep my strength up, and live long enough, to get at least another year on him.  I’m thinking he should be camping his ass off next summer!

Birthday CakeSo when one gets an autologous stem cell transplant (SCT), they take your stem cells and freeze them prior to giving you the chemo that will totally wreck your immune system (and I do mean totally). In my protocol, I got 96 straight hours of chemo.  That is what I had for Thanksgiving dinner that year.  Then they let you wait for 3 days, while the chemo clears your system (of course now I know it stays in your system for WAY longer than 3 days!), then they give you your stem cells back because your old immune system will die and these stem cells will build you a new one.

We call the day we begin our new immune system, the day we get our stem cells given back to us, our new birthday. Today is that day for me. Back in 1999 I received my stem cells on this day. Was the sickest I had ever been … except for last April when they were calling hospice, but that was from the cancer. In 1999, it was not from the cancer.  At that point, I had no idea what it meant to be sick from the cancer.  No, in 1999, that sickness came directly from the transplant. UGH!

Today I get my daughter’s help decorating the house for Christmas (yes, Christmas … not holiday), then go see my horse, then a visit from an old and dear friend.  Pretty good way to celebrate a birthday, if you ask me.

Even though the new immune system didn’t prove to be any more effective than the old one, any excuse to celebrate, right? So happy new birthday to me! 😉

As I mentioned in my last post, I am now working with Dr Vincent Gammill and yesterday I received, and started, my new meds/supplements in hopes of kicking this mess to the curb.  I will give it a couple of months to do me some good and will pray for good results.  What really frightens me is that I can’t see myself healthy any more, I have been sick for so long.  When I try to envision a healthy me, I just draw a blank.  Does that mean I am creating my death in the next few months?  I really don’t know where the line is between just being human and scared, and creating a reality.  I know, in the past, when I could still see a healthy me, it didn’t make disease back down one iota.  So I just don’t have the answers about that.  

I have gained quite a bit of fluid and tomorrow am getting it drained yet again.  I have had it done every six weeks for probably four times now.  I am really nervous this time because of how I have had to take my blood thinners ever 12 hours.  They made me stop it yesterday, so I have been worried I would throw more clots.  But I am also worried that perhaps it is still in my system and do not want to bleed into my belly afterward tomorrow!

So I am now using metformin, which has really interesting research with it and cancer.  I am also using three other things that Vincent sent me.  Can’t really discuss them much but if it works, I will be shouting from the rooftops!  Some of it came from Mexico and some of it is off-label use, like the metformin.  But at this point, I don’t really care as long as it works.  And it isn’t nearly as hard on me as the conventional alternatives.  I may still have to buy off on some toxicity, in order to survive, but I will hold that off as long as I possibly can.  But it does feel better to be doing something.  Will get labs drawn again in a few weeks, but I need to give this 2-3 months to work.

Please send thoughts and prayers for two things … most immediately, for tomorrow morning’s procedure that there is no unexpected bleeding or clots.  And also that this new protocol knocks things back again.  I really need this to work for me.