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.

 

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Comments
  1. Kylie says:

    Have been thinking about you and noticed your absence on the Cancercured site. Glad you are still hanging in there….hope things start getting better soon!! Best wishes from me in Australia! Kylie x

  2. Gary Ryan says:

    Hi Melissa, Gary here from Australia, thinking of you, my friend, thank you for the update.xxoo

  3. Debbie Fulkerson says:

    Melissa I came across your blog only about 6 months or so ago. Your courage, strength, and spirit have captured my heart. Your honesty and candor is such a blessing to those of us fortunate enough to witness it. Thank you. Love and hugs to you 😉

    • Debbie thank you so much for the kind words! How dis you find me

      • Debbie Fulkerson says:

        You know Melissa I really don’t remember. More coffee needed 😉 It was probably during some research on alternative medicine. Seems I constantly scour the net on that subject the last 10 years or so. In any event I am grateful I stumbled across your venture in life, that you share with us all. You’re very inspiring to me.

  4. Elizabeth and Soonil says:

    Praying for you.

    • Carole Berlin says:

      Melissa,

      Just a note to let you know that the Amazons/Study&Support-folks think of you often. We’re wishing you well.
      Hugs and love,
      cb

  5. Brenda says:

    Hi Melissa! HANG IN THERE GAL!!! :):) I know it’s a real battle at times, but also wanted to mention a few helpful things for you – from caring for my Mother and my Best Friend. I lost Mother 4 yrs ago in a few weeks from the D*** BC disease and help care for before, during & after my best friend’s liver transplant 2 yrs ago. Some things I learned, which I think might help you too are (1) regarding the “Vanco” aka Vancomycin aka “the BIG guns” – BE SURE they TEST your blood every few days cause (as with both my Mother & best friend) – you CAN get TOO MUCH (a poisoning) IF NOT checked – sometimes, they will hold the Vanco for a day or two until the “levels” come back down into the “normal” ranges again. (2) When my friend had Cirrhosis of her liver (BEFORE the transplant), she had the Ascites really bad too (for someone who is ONLY 4’8″, she was having to be “drained” TWICE a week for 6 months BEFORE she FINALLY got her new liver!! Anyway, immediately AFTER she was “drained”, they ALWAYS gave her 2 “bottles” of the Albumen via IV to “bring her back up” to where she would be “normal” again. The procedure alone, doing the “Para” aka Parasynthesis, is what would AUTOMATICALLY DROP your Albumen count, hence why they would “replenish” you AFTER the procedure!! In addition, it would ALSO help to get your B/P (blood pressure) back up too, if it was too low! Hope these will help you too, and ASK the doc about them too!!!! YOU CONTINUE to be in my prayers, and KEEP the FAITH will help too!! :):) Brenda P.S. I remember you from years ago, when I was on the F2F board! 🙂

  6. Jim and Diann says:

    You are one stuff cowgirl thats for sure gal! You and John are in our thoughts and prayers. Hope to be back out on the trails with you soon. Diann

  7. Jen says:

    Praying that God works everything in your favor Melissa! I’m so very sorry mama that this is what’s happening to you. I wish I had the room to take patch. hugs and prayers.

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