And, at this point, every little bit counts.  We had to go up to the VA Hospital in Denver yesterday to meet with the dietitians and an MD to assess if I needed Total Parenteral Nutrition (TPN) and if it was safe for me.  So I go walking in there with my TPN backpack in my hand and showed them that TPN is, indeed, safe since I appeared to be walking around and functional.  The things those people told me!  Allegedly the VA Clinic in the Springs had told them I had some sort of feeding tube, which I do not.  I showed them the operative reports that showed the full extent of this cancer, as well as the photos the surgeon took a year ago.  I explained that a Nasogastric (NG) tube was not for long term, a feeding tube in my stomach was not doable because it is “plastered to my retroperitoneum and could not be brought up to the abdominal wall.”  No feeding tube going in that stomach!  And then there is also the small intestine … but the report said, “the entire surface of the small intestine was covered in tumor.”  No feeding tube in the small intestine.  So what options are left?  TPN!  They agreed to cover the cost and that this was the appropriate method of nourishment for me.  Duh.  I had only told them that on the phone about five times … but I guess if they want to pay us $60 for mileage to drive to Denver, no worries.  The only downside is that this IS a government-run healthcare system, so it is a bit boggy and can take anywhere from a week to 3 months to come through.  I arched an eyebrow and asked them if they were hoping I wouldn’t live long enough for them to pay … they agreed to expedite.

Another small triumph was that I got through the night, last night, with no severe pain or vomiting.  WAHOOOOOOOOOOOO!  That was such a relief.  Gotta admit I really want more of that.  So I will continue to let my TPN do all my nourishing for now.  I am only eating when my stomach gets painfully empty and, even then, I only eat enough to take the pain away … just a few bites of something easily digestible.  And, for the first time since starting my TPN, I did not gain any weight or size overnight.  So perhaps my body will stabilize with the TPN and stop all this fluid creation.  I am also working on bringing Kris Kraft, energy healer, out to work on me like he did last year.  Chemo again on Thursday … die you bastards, DIE!

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Comments
  1. slythy says:

    The irony here is that you seem to be the manager of your own care. It’s not right that you have to go that far but at least the VA is there. I’m looking forward to your getting Kris Kraft onboard.

    Is there any compassionate care drug available that applies to you? We could lobby whoever we need to.

    xoxo

  2. slythy says:

    The irony is that you have to go that far to manage your own care and you already know all this obscure information. They should pay you to consult on yourself! Sorry about the long drive. That sucks. Can they work via Skype? I’ve heard of this being the new thing. I would think the military should lead on this technology medicine.

    I’m eager to see what happens if you can get Kris Kraft onboard again.

    xo Lynne

  3. Kim says:

    Wonderful news!

  4. Terry Galbreath says:

    Hi Melissa – I’m glad you got some movement from the VA. As you know, I’ve been dealing with them for 20 years now! We’re currently in a project (putting in a walk-in tub) and they “raod-blocked” me, saying that Rehab had to approve and order it. That becasuse they (SAH – special adapted housing) can do an entire bathroom, BUT can’t do a tub. Far too much chance that I’d order a hot tub for the deck (not much room in a walk-in for a “party”). The only appontment they could give me in Denver was 2 1/2months out! And even then, there was a chance they would just say no. SO I called Doug Lamborn’s office, started a Congressional Investigation and got the regs changed (in a month!). It’s a sad fact that you can get the law changed fast than the VA can move to do anything for you. Not all VA is bad – the dental is wonderful and I get some drugs and orthotics from them. The point is, if you hit a roadblock, call your Congressman – it’s actually quicker! We’re following your battle – – keep up the good fight. Terry Galbreath

    • Terry we were actually going to the Senators. But thankfully it didn’t come to that! I will definitely give u a shout if I have problems again. Totally forgot about all your experience!

      • Billa says:

        Hi!! I know you must be going through a relaly hard time and will have trouble throughout his Chemo process. I kow because my Mom had Acute Myloyd(spelling??)Leukemia and had to go through Chemo too. Trust me, it gets easier and easier when it’s gets closer to the end of it all. I’ll pray for you and I hope all is well at the end of the process! 🙂

  5. Denise Barnes says:

    I am hoping the small victories leads to many more greater bigger ones that come upon you as blessings after blessings!

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