Tuesday, January 5, 2010

Update on Timeline


Ohhhh... and I guess you guys might want to know about what my timeline is here??

Well, we met with the oncologist yesterday.  As of now I've completed 7 chemotherapy sessions and about 50 Vitamin C IVs.  The oncologist knows that I am doing this alternative stuff, but doesn't really buy into it, and doesn't even really seem that interested in it at all.  But, he's not fighting me on it, so that's good.

I did ask him yesterday after he's seen me and we've talked about my experience if he thinks I am fairing better, worse, or equal to others he's treated for this same condition.  He said, well, I do have a patient who is your age and treating the same thing and he isn't tolerating the treatment very well at all. We expect the same outcome of curing his cancer, but he really is having a much harder time than you are having.  But, that's an N of 2 and I can't draw conclusions from that.  Everyone responds to this therapy differently. 

And so yes, I'll give him that.  People do respond differently.  But I like to believe that these supplements I am taking everyday, and the vitamin IVs, and the hyperbaric oxygen chamber, and my diet are making a difference.  I am trying to eat organic, whole-foods, and avoid sugar and alcohol.   I haven't lost all my hair.  I am still menstruating. .I don't have mouths sores, neuroapathy, heart or lung problems, edema.  And I am still having a good full week of feeling good every other week. 

So what's next?

Well, I get a PET scan the week after my 8th treatment.  For a PET scan the inject you with glucose that is irradiated.  They use glucose because they know that cancer LOVES sugar and it will go directly to the tumors.  And then they take an x-ray of you.  The irradiated glucose will show up, and show where the tumors are.  So  yes, they all know this.  It is the foundation of a major tool they use to diagnose and follow cancer therapies.  So why is it that they still recommend gatorade, cinnamon buns, and don't strongly recommend a sugar-free diet?  That still escapes me. Well, actually, I am not as flabergasted as I was before I started treatment....on diet...there is a use for indulgence when it comes to matters of the pshyche.  When I absolutely don't feel good, or have had a stressful day, I am going to eat Mexican food, and it will be okay--and it makes me happy.  And I enjoyed the holidays with a semblence of strictness, but was a little more lienenant with myself...anyway...I could expound more about diet strictness at a different time...it is a deep, many-year lived struggle...

On my first PET scan I could feel where my cancer was.  My neck was burning after the injection.  It was on fire. 

I just hope that I don't feel that way again this time.  I hope so badly that this cancer is gone. 

So far, all visible and palpable signs of my tumors are gone.  There is a slight swelling on my left collar bone.  But the doctor says that it doesn't feel like lymphoadenoapathy.  I sure hope so. 

The doctor says that if the PET scan comes back negative, which he completely expects, then he won't recommend radiation, and we will just do 4 more chemo sessions, and I should be done!!  And it will be behind me. 

So here I sit.  Thinking that I didn't want to do more than 8 sessions. I don't want to do an additional 4 sessions.  But, I also don't want to do radiation, and he said that is a possibility.

I asked him what would happen if we didn't do the additional 4 treatments.  He said, well, the PET scan isn't extremely sensitive.  And even if it is negative, there still may be a residual few cells left. And if we don't kill it dead, then there is a chance of recurrence.  And if it comes back then I have to do this horrible thing called autologus stem cell transplantation.  This is where they take stem cells from my bone marrow and save them.  They then give me chemo so strong that it kills all of my bone marrow.  I have to stay in a hospital for weeks during all of this as my immunity will be destroyed.  And then, they reinject me with my stem cells to regenerate the bone marrow.  It sounds horrible. 

So scare tactics.  ....  it kind of works.  ... it kind of makes me want to just do this therapy until the decided end.  Which, who decides this, I don't know.  He has no way to factor in all this alternative stuff I am doing.  And neither do I for that matter. 

And all this really hinges on the fact that the PET will come back normal.  We don't know that yet, and I don't even want to think of what it means if it doesn't.

So there we are....still up in the air.

My PET scan is scheduled for Tuesday, Janurary 19th. I should know within a couple of days the result of that.  And I am sure  you'll be hearing from me then.

5 comments:

  1. Well, I for one say all cancer will have been flushed and no more will be in your body.
    You will beat this thing.
    We just know it.
    Have a great day
    Momma2

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  2. Hey, sweet heart, you are such a strong and beautiful woman with sooooo much courage and will power that this beast simply pales in comparision to the number you will do on it. It sounds unnervingly scary and you are so full of hope that I cannot help but be infinitely inspired by the brilliance that radiates from your soul into the world around you and illuminates the rest of us. You are just amazing that those words don't even do the justice of describing you!!!!!
    I am humbled to have you in my life....my big sister all the way! I'm sending you all of my love and many, many hugs!!!!! I'm (We're) here for you! Can't wait to see you!

    LOVE YOU, Tijana (& Pete & Jake)

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  3. I love you Evie, forever and ever and ever and ever and ever. Love, Crofton

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  4. You and Michael and all of your family are ever in our thoughts and prayers. Take strength in all of the love sent your way. You have and will always have the support of Nature. Brenda & Peter

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  5. Thank you Rin, Tijana, Crofton and Brenda and Peter. Your love helps bring me through this ordeal. I love you all very very much. And I feel so incredibly lucky to have people like you in my life.

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