We just want some normalcy …

Posted: April 27, 2012 in Breast Cancer, Spiritual/Emotional/Energetic
Tags: , ,

I am finished with my fourth week at Progressive and the news is not good. My tumor markers and liver enzymes all rose and, even worse, my Circulating Tumor Cells (CTC) quadrupled in three weeks’ time. I have not seen a jump quite so aggressive and that scares the crap out of me.

So we discussed this with the team here and they feel we need more specific information about what we are treating. I am scheduled for a liver biopsy next Thursday. I am away from my home for damn near 12 weeks now with now no end in sight. I am getting sicker and, if this continues, am wondering if I can even get home. So I want to put out my disclaimer … This is not a pity party. It is just breaking down the reality of Stage IV cancer … And just in case you didn’t know, Stage IV is considered terminally ill. End of the road. Unless something else kills you, this will. You will never be free of it … You live in fear … No, prolonged terror … That it will jump into some horrific place like your brain or lungs. You live with that day in and day out. Every single day.

Stage IV disease is a whole different animal and so many people just don’t get it. Stage IV disease is so different than earlier stages. It is unpredictable and, more often than not, turns on a dime. One can be holding her own pretty well and be gone within a week. There are many who see me every day here and, even so, they still just don’t get it. I have explained, dozens of times, that I can hardly eat. I have no appetite. No interest in food at all. Something everyone just takes for granted … It is so stressful even trying to figure out what I can eat. It’s like having the tail end of a stomach flu and seeing that pizza commercial on tv and you can’t even look at it. Every single day. Every single meal. For the years now. I drink a 11-oz protein drink and feel like I have eaten Thanksgiving dinner. But still they tell me to just drink this powder or swallow those pills … And to most people, that’s no big deal at all. For me, it’s a huge deal and even though they deal with cancer patients, I have learned that unless someone carries a problem in his or her body, they just can’t comprehend. As the folks around here are saying, “We just want some normalcy …”. Nice concept, normalcy.

We have traveled to the other side of the country, staying at the mercy of others, with no space to call ours. We have spent all the savings we had and I am still not well. Our horses no longer get ridden, our dogs aren’t properly exercised because my energy levels are flagging more than they are increasing. My dog agility days are long gone. I spend all day, every day, in a clinic.

We love to travel, but can no longer even imagine going on vacation what with all the time and money we are spending on my treatment. And quite honestly, with as fast as Stage IV disease can turn for the worse, there is no way to plan for more than a month out, so last-minute travel is the only way we can do it now, if we ever get to again. We keep being told that fighting cancer is a full-time job. That may be, but it is certainly the only full-time job I have ever had that didn’t come with a paycheck. How normal is any of that?

We are now going to pay more than our mortgage payment for a motel suite because the family here wants some normalcy. Yeah, me too. Especially right now. I’m frightened, confused, and wondering if I will ever see my home again. I am having to ask for financial help from others. I gave up on normalcy five years ago. As anyone who lives with, or loves, someone with Stage IV disease can tell you, there is no more normal. You go wherever you need to go, spend everything you’ve got, do whatever it takes … Just to stay alive. And everyone else’s life just moves right along.

But hey, even though those hits just keep rocking my world, I will keep putting one foot in front of the other … As long as I have the strength.

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Comments
  1. Rosieo says:

    Melissa
    My heart goes out to you. I have been following your blog. Thank you for sharing your journey.
    May God Bless you and keep you and help you find a cure.

  2. Tina Nance says:

    I cannot even imagine what you are going through. You are one of the strongest people I have ever met, and I am praying for you and your family — big hugs to you and John

  3. Carol says:

    Dear Melissa,
    I am following this steep ‘hill climb’ you have taken on and am breathelss worrying and wondering how you will continue to endure what you have been going through day after day. I think maybe you are superhuman, that you have some magic potion that keeps you moving forward into each day, or maybe you’re just one of those ‘Metsters’ who has a tiger by the tail and is not going to let go until you are both spent. As someone with Stage IV Breast Cancer, I admire you and marvel at your insight, your enduranmce and your ability to express yourself throughout this journey across the country, hopefully zigzagging your way home..I pray that will happen soon, and not in failure, but in slaying the beast within and pulling off some sort of miracle in the last minutes of the 4th Quarter..

    Thank you for putting it out there and for describing the fear and the horror of having this awful disease. A well-meaning friend recently said that I should consider the additional time I seem to have been given since my diagnosis 1 1/2 yrs. ago as a ‘Gift’ (as opposed to dying immediately or soon after diagnosis). I could not believe that this person thought I should relish each day & just enjoy my family for as long as this ‘Gift’ keeps on giving!

    Well I do that of course, and I am thankful for each day I have, but its not as though I’m just coasting along, free as a bird. Along with the worry of the unkown,there’s the daily pain, fatigue & discomfort of the side effects from my chemo meds that impair my quality of life; there’s the contunued need for monitoring and treatment, the lab tests, injections or infusions, etc. Its no walk in the park..I’m sorry that I’m kvetching when you have so much more going on,.but I wanted to underline what you have already stated so eloquently & clearly in your ‘down home’, ‘South Carolina girl’ way of saying things.

    God Speed Melissa, feel good that you have done your work on this good earth to further the cause…but I hope you do rally & get to raise hell again!

    PS: There are protein drinks I found that are totally awesome, made by Bolthouse Farms, have several great flavors and most have 19 Gms of protein in a 16 oz bottle…they are all natural & taste yummy (even on my worst days,esp. the Choclate Cappuciono & the Hazlenut Latte). Hope you can find some…it might help that appetite problem you have. Hugs & Peace….

  4. Wendy says:

    Sending you hugs and blessings! You are an inspiration Melissa! I so appreciate your writings, and those looking for normalcy will never get it, which hurts so deeply, I know. Continue to shine your light and enjoy your cute little dogs.
    Love,
    Wendy

  5. Diane Oberlin says:

    Dear Melissa,

    I am one of the old timers from WebMD F2F. Haven’t been around there in a while–doing well at the moment, praise God. Rachel updated us by email on your journey. I so admire you for all of your courage as you continue to fight the beast! My thoughts and prayers are with you as you face each day, and hope you find peace and comfort with your friends, family and sweet dogs. You have been and continue to be a blessing to all of us!

    DiO

  6. Kimberly says:

    LizzardLee…I’m one of those “Oldies” Rachael tells about from F2F Breast Cancer Friends…not that we’re old she says…well Rachael, there are those days GF! For the life of me I can’t remember my handle on F2F…sheesh, I can’t remember much any more period! Damn. If I could take this from you I would in a heart beat. Like anyone would want this right? A survivor understands how difficult this is for you and to take the pain and fear away is all we would like to do for you today. Support? It is here 24/7…my heart and hugs, prayers too are with you.

    Even still with a few years behind me, the ? of any remnant’s of the “C” still seek out my thoughts from time to time. For you I know they are real and I can’t honestly say I do understand the enormity or breadth of your journey, I only know you still have strength inside you and don’t give that away to no one. We as survivors do what we need to do to take one more day as it comes at us…eat your veggies and take your protein…(had to put that in there)….I hope only that if my journey ever became enough like yours I would have the heart and soul as you do to keep going, keep inspiring us lady keep giving us hope.I read somewhere a small inspirational:

    You will be happy to know that the universal law that created miracles…has not been repealed.

    “You are the BEST you there is”…take good courage in yourself and thank you Lord for the loving support and warm hugs of Melissa’s husband to give her comfort and serenity in the ups and downs of this journey they are traveling together today.

    God be with LizzardLee

    Kimberly

  7. Jen says:

    Melissa,

    My heart goes out to you. I wish I was there to give you a place to stay, or someone to sit with. I am so sorry that you are going through all of this. You are always in my thoughts and in my prayers, I may not respond to every blog but I read every post almost everyday. I don’t know that there are any words, you are stronger than anyone I have ever met or had the priveledge to know and it is your strength that puts me in “check” when things feel out of control and I start to feel run down. I pray that you and John are able to come home soon and that you can enjoy your family and your Colorado Mountains.

    Tons of Love and Prayers for you – i’m sorry I can’t do more.

    Jen

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