Posts Tagged ‘Georgia’

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.

Ice coming out of the wall

Our last travel day went smoothly as we made out way south to Georgia.  Got a pic of some really cool, frozen runoff coming out of a wall by the highway.  Finally we made it to Georgia, got settled in in Marietta, and I am now ensconced in the infusion room of the Immune Recovery Center.  It was a bit of a goat rope this morning because they suddenly lost one of their physicians to an unexpected heart attack last week. The clinic was a busy one, which I would say is a good sign.  Either they’re really helping people here or they have one helluva marketing team.  Seeing that I could hardly find any reference to this clinic on the internet, I’m hoping for the former.

The first day started out much like any doctor’s check-in.  Filled out the necessary paperwork and handed over the credit card for the consultation fee.  In the exam room, after collecting a urine sample, they took preliminary information, accessed my port, and drew a crapload of blood.  By tomorrow, they’re going to know me better than I know myself.  Then they hung three bags on my IV pole:  15gms of IV Vit C, Colloidal Silver, and an anti fungal of which I can’t remember the name.  I spent the rest of the afternoon just chilling with the IV, talking to the director of the clinic, who is both a physician’s assistant and a licensed naturopath.

He is going to give me a small dose of Cytoxan chemo on Friday … a very small dose … to remove the protein from the outside of the cancer cells so they are more vulnerable.  That is a one-time dose.  I will also start Cytokine therapy Friday, or so they said today.  The insulin potentiation chemo will start next week.  One of the drugs will be Gemzar (gemcitabine) which is a chemo drug my cancer has never seen.

At this point, my biggest concern is food.  I just can’t eat much.  And he’s suggesting Megace which two different oncologists have not considered the benefit worth the risk, so I don’t

Butterfly bag

think I’m going buy off on that one.  I know I need to eat, but they’re just going to have to work around my situation and hope that, through treatment, we can get my appetite back.

Afterward, we had to rummage Whole Foods (found the cutest tote … I’m a sucker for butterflies these days … transformation), find some protection for my iPhone, and get a warm, cozy throw from Target.  I was so cold in there today.  Cloudy with highs in the 40s but tomorrow will be sunny with highs in the 60s.  Yup, leave it to the South to be bipolar!  I’m exhausted, so I’m headed to a glass of wine and my favorite meds.  Early bed for me tonight!

 

Now all systems are go again.  We just can’t not go to Georgia.  You know how I keep talking about the trail of bread crumbs and the path illuminating in front of my feet?  Well, this is it.  I could stay here and do conventional chemo, and insurance would cover every red cent of it.  But there would be no immune recovery or immune stimulation.  And let’s face it. If my immune system was acting the way it should, it would not have escorted cancer in my door, much less poured it a drink and had it make itself at home. Yeah, it made itself at home alright. Took over the whole damn house!

Everything has fallen into place, and I feel very drawn to it.  As I said yesterday, I have felt that before and wound up in so much trouble.  The self-doubt that experience caused has left me not trusting myself very much.  Here’s the really weird thing.  I have not once, in the past five years, gotten No Evidence of Disease (NED).  I have had active cancer in my body the whole time.  And I’ve been close to death more than once.  But each time, I have pulled back up out of that to the point that people take it for granted that I will be just fine.  I feel like the Boy Who Cried Wolf in that one of these days, it’s going to be the one that takes me out of here.  But who knows when that will be?

The important thing is that, looking back, I see a distinct pattern of healing. Each time I go down, when I come back up, I am better than before.  Stronger than before.  More energized than before.  Wiser than before.  And older looking than before, but I’m trying to be patient with myself.  My body has been a war zone for the past five years.  A bloody battlefield.  So a wrinkle or two … a scar or two … expected status.

So, the Devil Went Down to Georgia.  Day after tomorrow!  If anyone knows any good boiled peanut roadside stands, holler!  This Southern gal has been out of the South for too long.