Staging and effects

The flames soar high out of my head with flashes that serve as a reminder to the illness inside. My mouth is singed, my heart gets weary and I found myself saying to a friend that I have begun to feel the effects of my cancer ‘stage’. Don’t get me wrong, this is not a giving in passage, perhaps it is the acceptance part of this cancer that I read of recently. Accepting I will carry this burden in some way or another throughout my days, may they be long and not so arduous though.

I began my new chemo. It is a pill, so fewer visits to chemo jail. I will go in for fluids, blood work and such, to keep an eye. It has been one week on the chemo pill, which was suggested by ‘the beyond state of the art’ cancer technology and sanctioned by my doctor. I just found out that apparently my cancer pathways are pointing in the Neuroendocrine Cancer direction. I am a rare bird, Breast Cancer that metasticized into this NC. This has been up for debate for a year now, and the technology confirmed my docs suspicion. It’s an angry cancer, so I choose to be calm….I’m not letting it get angry. This means those of you around me must face this with me in peace with little stress and minimize the blazing energy. I can be a tough badass fighter in a cool and collected way. Distancing myself from the realities of this stage, and just hold on….

This first week on Afinitor (A Fortune For…) has been okay, except for the return of the mouth sores yesterday. I wonder if this is just my body still needing to heal and having too much activity and nervous energy surrounding me. We have had an influx of visitors from the east coast. All wonderful, but tiring and having me feel weary from the questions. It is difficult to let go of my old self, the hostess and rest while they fuss around me; it is a stressor that I suppose I should not have right now. so, I meditate these sores will not be as bad as the last bout. Tomorrow I will receive fluids, get some rest in chemo jail, and hopefully learn that my white count will be normal. I need this drug to work and be somewhat kind to my body. I don’t want to start out feeling the effects of the high on the very first week. Supposedly I am to take this drug daily, though doc started me on it for only four days a week. I want to be well and ready to dissipate the angry tumors. The options are getting thin, so I need to work up to a week of this remedy. This drug is ‘a fortune for’, so it should work right!?

The cost and hoops of this drug makes me wonder…
If I didn’t have the insurance, the blessed connections in the medical research field, the support of generous friends….where would I be?
It has me thinking of those less fortunate and wanting to help in someway. I wish our presidential hopefuls were spending time worrying about the lives of those who cannot afford illness than the shit they dance around in tireless debates of rhetoric. This is a great topic that I, unfortunately, do not have the energy to write more of now…but it is on my mind. You are all on my mind.


22 comments on “Staging and effects

  1. carolecluer says:

    I wanted to comment but can’t really think of what to say, just that on a dark morning in Derbyshire, England I am reading your blog, thinking of you and sending you my warmest prayers. I wanted to you to know your words move someone halfway across the world x

    • jelebelle says:

      Thank you Carole….I am happy these words at least touch people, though at times hard to write….it keeps me coming here and sharing.
      I hope you are well. xo

  2. billgncs says:

    and you are in my thoughts as well. I agree on the debates!

  3. YAPCaB says:

    I hope you find this drug at least a little easier to tolerate than regular chemo. Please don’t think that the acceptance I spoke of means giving up. I think it’s accepting our mortality and allowing that to improve the quality of our life. To me acceptance is very life affirming.

    I am not what anyone would call religious. I will pray for you, though, just in case. And I will cry for you.

    • YAPCaB says:

      Sorry, didn’t mean to go all weepy on you. This cancer stuff seems quite good at producing strong emotions.

      • jelebelle says:

        Indeed, this cancer stuff is good at turning on the water works. No need to apologize, and I was inspired by your acceptance post very much so, thank you for that. I hope you remain we’ll, and try to keep those spirits up…difficult all things considered. Best….

  4. Your last line resonates because you were on my mind last night. I’m so glad I got a visit with my morning coffee. Keep fighting the fight calmly. There are plenty of us raging for you.

  5. It is a blessing to have the drugs we need covered, and you are right that greater focus should be given to supporting those who can’t afford the latest and the greatest of options. Being sick isn’t easy on anyone, but being sick with a bill collector knocking on the door must be so much worse.

    I hope the flames settle and the sores soon clear. Best wishes to you. ~Catherine

  6. Jill says:

    I was so glad to see a post from you today. I think about you all the time. Your willingness to write this experience is teaching me so much. The whole acceptance thing is so hard (and I am not carrying the burden of cancer) but acceptance is sometimes the only way I can fall asleep at night. Thank you for reminding me about it.

    • jelebelle says:

      Oh Jill…thank you. Acceptance does at least help those of us experiencing grave heartaches to endure, keep falling asleep and waking up with a new day. I have to remind myself too, the writing helps! Much luv to you… xo

  7. Even while you feel so terrible, you are able to think of others. Thank you for discussing the cost of medications and what happens when there is no insurance. Sending calming thoughts your way.

  8. To think about all you’ve gone through and are embarking on now, makes my heart break for you. Wishing you peace and calm.

  9. All I can say is that I will hold you in my thoughts and prayers.

  10. Barb Snow says:

    I am sending you loving-kindness. You are indeed wise to not focus on the debates. Showmanship will not solve the problems we are all facing, but for now, you need to focus on you. Beaming all things positive your way.
    Barb in Minnesota

  11. Audra says:

    I was so relieved and thankful to finally see another post. I have been thinking about you and praying for you. I met your sweet boy a few weeks ago when you were in Swedish, he is such a doll! You are such a strong woman and I know like myself it has so much to do with how much we love our children (& husband). I will continue to send you positive thoughts and prayers. Thank you for sharing your story with us. Your writing is beautiful and I find myself feeling a lot of what you are able to verbalize that I cannot. ~Audra

    • jelebelle says:

      Thank you Audra! I’ve been thinking of you as well and been meaning to write you an email of which I will do soon. I wanted to come chat with you but was so sick. Feeling much better, and slowly getting back together and to my life. You are right our families keep us strong…. I hope to talk with you soon, and that things are going well for you. Hugs to you and yours.

  12. Dorothy Padilla says:

    I am just about to start taking the Afinitor/Aromasin combo.
    I have lots of apprehension about the mouth sores, etc.
    I have mets to the bones, and just found out about new liver mets this week.
    Feels reassuring that I’m not in this alone.
    Sending healing energy and lots of love.

    • jelebelle says:

      Try to keep your mouth clean with lots of salt water rinses, it helps. Afinitor definitely has given me more mouth sore side effects, but since this last bought I wrote of here, it hasn’t been so bad. Good luck. You are not alone!! Thank you for sharing, be well xo

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