Discouraged … again

Posted: April 14, 2012 in Breast Cancer
Tags: , ,

I have now finished my second week at Progressive. The first week I had some major miracles that I didn’t write about because I didn’t want to jump the gun. Good thing too, evidently. They didn’t carry over into the second week. Now don’t get me wrong … it’s certainly not Progressive’s fault. They are just as awesome as they were the first day. It just appears that nothing is going to really work for me.

When I left Colorado, I had been on total parenteral nutrition (TPN) for three weeks because I couldn’t eat enough calories to maintain my weight, much less put back on the pounds I had lost. That hasn’t changed. I still don’t want food … not even the most nutritionally empty calories I can think of, like Krispy Kreme doughnuts. Don’t want ‘em, even if they were good for me. And folks seem to think that means I’ve given up or am just being difficult. Neither case is true.

Last week, I enjoyed a normal-sized meal for the first time in three years. Now that may not sound like a big deal, but let me try to paint you a picture. You know when you are just getting over a stomach virus and you see some pizza commercial on television and you have to look away before you gag? It’s like that when I look at any menu, no matter how tempting the fare. If the texture, consistency, and flavor aren’t just right, I gag. Salads and juicing? Forget about it! Every day of my life, three times a day, I have to stress and struggle to try to find a cup of something I think I can get down me that has enough calories to sustain me. That’s a really tall order. A cup of anything ain’t much and to try to cram 400-500 calories into that cup and get the perfect taste, texture, consistency … oh yeah, and enough hunger to even think about ingesting it. Does that paint a little bit of a picture for you?

So even if we kill all of this cancer, if this appetite thing doesn’t change, I won’t survive much longer. Now that I’m on Medicare, they will not pay for TPN unless I have failed … that means had it put in, and used it till it no longer worked or it was evident the desired effect was not happening … both a nasogastric tube (tube down nose into stomach) and a feeding tube (tube directly into stomach). Let me tell you, a year ago, I had an NG tube for three weeks. I couldn’t take one more day. By that point, it was excruciating and quality of life? Non existent. You can’t go out in public without frightening everyone because you have this tube hanging out your nose like elephant man or something. And it is uncomfortable as hell even to talk. So thanks to the government insurance rules, I can go from having a decent quality to what is left of my life, to having hardly any life at all, in the course of a half hour. (And we think government-run health care is a good idea? No one asked us disabled folks or veterans and we are the ones already under that system. OK political rant over.)

When I left Colorado, I didn’t have a belly full of fluid. I had a head full of hair … looked like a plush toy, but it was a full head of hair. Now I’m carrying probably six pounds of fluid and I’ve lost so much hair I had to shave my head this morning. I think that was the last time I’ll ever see my hair. It takes so long to grow back in, and even when it does, it takes a couple of years to return to its normal texture. I have no reason to think I will be here that long. We are out of money and, in the past nine weeks, I have had five different chemo drugs. What else is available for me?

Well, I can go home all bald and full of fluid and have a liver biopsy to try to ascertain my ER/PR and Her2neu status. Then I could try whatever chemo drugs I haven’t yet tried, but they’re brutal. What with the full chemo I had last year, and the five I’ve had recently, that is six chemos in the past year … and though last year I almost achieved remission, I still couldn’t eat. So if we put me into a sustainable remission, how long could I survive without eating more than 700-800 calories a day? Because that’s about all I can consume on my own.

I had also had a spike in my urine alkalinity last week, which was a major miracle as well. I have not been able to get, and stay, alkaline the whole five years I’ve been trying to get and stay there. Last week, I tested at 7.0 which was the best I’ve seen in me without drinking baking soda in water, which isn’t the best thing for you. But not this week. I’m back to being acidic again … even with all the oxidative therapy I’m getting, and they should be alkalizing the crap out of me.

Given both of these things: the continued lack of appetite and acidity, I just don’t know that anything will change the course of this path. Have requested a meeting of the minds with Progressive’s two NDs to reassess where we are and where we are headed. I just don’t know that they have any other tricks up their sleeve where I’m concerned, so though I’m not ready to die yet, I seem to be out of options … especially since we are out of money as well. Running out of hope here. Sorry for the downer of a post, but hey, y’all are along for the ride … and this is part of it.

Now you can get a glimpse of the woman behind the curtain. Everyone says I’m such an inspiration, so strong, so courageous …. nuh uh. I’m really just not ready to leave the ones I love, and not ready to go through that unknown process of dying. The little experience I have had it it was quite traumatic, and not one I am anxious to repeat. Now you can see that I’m no different than anyone else. When faced with my own mortality … when my back is really in the corner … I crumple like a well-worn dollar bill. So I just try to get through this weekend and hope I can get some time with both of those doctors on Monday which, as busy as that place is, will be miraculous in and of itself.

Comments
  1. Gary Ryan says:

    Hi Melissa, you have reminded me of what you have lead me to my dear, Exodus 25- verse 25.
    Worship the Lord your God, and his blessings will be on your food and water. I will take away sickness from among you,I will give you a full life.I am standing by that promise, and many others from Gods word, that you have lead me to believe, God has definately not given up, he is working through you every day Melissa, in so many ways, you are not fully aware of what your ministry is achieving, but believe me it is.
    XX00 Gary

  2. Jackie Ryan says:

    Ok time to have a feeding tube inserted, no not a NG tube yuk, a peg in your belly, at least with that you can load enough calories to not only sustain you nutritionally but regain some weight. Do not fall victim to satan’s best trick and believe that you are running out of hope, yes the task ahead is incomprehensible and overwhelming so it cannot be done alone. A friend once challenged my commitment to true faith (when my 11 month old baby was burnt to 30% of his body and having his burns scrubbed in the burns unit writhing in pain and screaming desperation for mummy to help him) are you really truly completely handing this over to God she said, I was angry and offended immediately because I thought I had and told her so, she then replied “well then let go of the other end of the rope because God has taken it but you still want to hold onto it just in case”. It took me a couple of days to work thru my reality but yes sure enough I worked out that despite my nearly constant prayers to end the suffering for my child in the long road ahead I didn’t really let go of it, I wanted to fix it like my child expected me to but was not ready to hand over complete control of an overwhelming and incomprehensible task to another. We are human, He is not, He is the Almighty, Living Water, Bread of Life, Author & Finisher, Saviour, Redeemer, King of Kings, Anchor, The Way The Truth and The Life. Remember who it is that you’re asking to take on this task. xxx Jackie Ryan xxx

    • As I said in my post, I cannot get a peg until I have failed an NG tube. Insurance won’t cover. Not down for that. Yes, I’m aware of who I entrusted with this task. I’m still here, but I have been here long enough to watch my body die little by little. Not for the weak of heart. I don’t even look like me any more. I will most likely never have hair again and, if you saw me naked from the waist up, you would not even know what gender I am. So sorry … I’m not all God-enamored at the moment. I thought this was my miracle … Now we have no more money and I’m worse off than I was when I came. So I don’t exactly feel all kumbaya right now … Sorry. :(

      • Jackie Ryan says:

        No need to say sorry, you have nothing to apologize for, I prayed about my response to you and that was what came to me. How much would a day procedure for a peg insertion actually cost? It would have so many benefits especially if you are returning home without further clinic interventions. No more iv medicines or the mental challenge of trying to swallow anything at all, it can all go thru the peg, all self made inexpensive immune system building things, I’m sure you have an extensive list but if you’re after recipes email Gary or I. I know that we have never met and I can only create an image of your personality from reading your blog journeys but I was under the impression that you were one hell of a full on take the lead completely holistic well educated frontline kinda fighter, a lot like how I do life, but just occasionally we will be smacked in the face with something that is just too big, not that we don’t exhaust all our efforts in attempting to take it on, we finally surrender only from exhaustion and that is the time that chicks like us let go, hand over the reigns and swap seats with the co-pilot, Allow Him to heal you. xxx Jackie Ryan

      • Jackie sweetie, a peg insertion is a surgery … A procedure that involves sedation. How much could it cost? Several thousand, I’m sure … And we no longer have that. It has been funneled into the greater economy of Georgia … Oh yeah, and Karen Korona’s pocket last year. So if it is pricey, no longer an option for me. :(

        I know my feelings are disturbing to some … They are to me! But I am only human and can only take so much. I’m really hoping not to stay in this place, but I don’t know how long I will be here or how I will get out of it. It just really sucks to not see a path on front of you at all.

      • Jackie Ryan says:

        Now I am apologizing Melissa, I’m not sure how your insurance and Medicare system work over there. Here in Australia it is probably worked out different. Gary’s daughter had a peg for years before she passed away many years ago so I understand the procedure. If certain medical procedures aren’t covered under the insurance here then we can elect to pay for them and either Medicare or insurance then cover the hospital stay and part of the anethesist and surgeon fee, leaving a bill of theatre costs, gap fees and the implant, around $1,000 out of pocket. I just assumed and I shouldn’t have, I’m sorry, that if you were covered for certain things then you were covered for them period. Insurance company’s just love to point out their loop holes in policies to avoid payment, it sucks. Gary and I are both wishing you peace, rest and love, xxx Jackie

      • Thank you Jackie! I’m pretty sure here if you elect to pay for a procedure that is against Medicare guidelines (not going thru the NG tube failure first), then they would not pay. And if they say it doesn’t meet guidelines or is not medically necessary, then my secondary won’t pick it up either.

        So yeah, they kind of have me backed into a corner. :(

  3. Meg says:

    So totally understand your not being God-enamored at the moment. Well said.

    I really don’t have any suggestions, except to figure out how to spend the most of your time in nature and comfort, not in hospitals and sick rooms. Don’t worry about what you look like (easy to say, I know).

    I just wanted to let you know that I’m reading this, and feeling for you. I’m hoping that some light is coming your way soon.

    Peace,
    Meg in Oregon

  4. Jen says:

    Melissa,

    I know that we haven’t talked in a few years and I’m so sorry for not being there for you, I should have been. Even more so, I can not express how truly sorry I am that you are suffering like this. You deserve peace and health more than anyone I have ever met or known. You are entitled and well justified in feeling the way that you do and I can understand you not being all God enamored right now. There are just no words that I can find to express how my heart is truly breaking for you. You are and will be in my prayers. ~ Gentle hugs and a warm heart full of prayers to you, Jen

  5. Susan says:

    My thoughts are with you, Melissa.

    Love,

    Susan

  6. Debbie says:

    Melissa no words of wisdom coming your way, don’t have any, just want you to know I’m thinking about you and John.

  7. Denise Barnes says:

    What a post today! I actually re-read it. I love the brutal honesty. And the comment about medical care in the hands of the government – WOW!! Such a different perspective coming from a veteran.

    I know it was a downer of a day which means I am looking forward to an encouraging day asap! All I can say is that both my mother and I are continuing to pray for you sis!! There has to be some ashes from beauty in this.

    • Well allow me to clarify … I am thankful to have the VA available to me. But the system is so bogged down I have to book appointments months out. With my medical condition, that does not work. When things change with a cancer patient, they can change very fast. Government-run anything is slower than Christmas. Nothing is finished till the paperwork is finished, etc. Anyone who has ever worked for the government knows that … So even though he VA considers me 100% totally and permanently disabled, I try my best to stay out of that clinic if I can help it. It is already too bogged down and I would rather not clog up that boggy system, when I have other options, and there are young men and women coming home with body parts missing. I might be missing a body part or two myself but it is from a whole different kind of battle. :)

      I am totally thankful for the VA benefits I earned, but I can tell you there is nothing efficient about it.

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