Archive | May, 2012

Brain MRI Results Are Good – NED (No Evidence of Disease) :)

10 May

So, I just got my results from the brain MRI. Not only do I have a brain there is no evidence of disease! Such a relief.

I am waiting on one more test. Hopefully that will be good news as well.

Thank you for your continued prayers, positive vibes and love.



The Waiting . . .

9 May

I am waiting on scan results (brain MRI and another test).

The results are in somewhere . . . I just don’t have the results yet . . . because that is how it works. So my family is worried (I understand this) and I am worried too. Welcome to the post-cancer landscape.

I'm trying to be fierce :)

I’m trying to be fierce 🙂

It is funny . . . when I went into the imaging center and filled out the routine paper work and answered all of the the routine questions that I always have to answer . . . I couldn’t help but laugh at how this is all now so routine. And yet, it simply is not.

I flew threw the questions, checking the box next to “no” in most cases and then stopped on the question: “Are you claustrophobic” I had to laugh (to myself, mind you . . . I realize the implications of someone laughing out loud while filling out medical forms in the lobby of an imaging center . . . not that I particularly care if strangers think I am a loon . . . this cancer roller coaster does make you a bit loony at times).

I used to be claustrophobic . . . and I suppose on some levels I must still be. But, in the scheme of things – spending 20 to 25 minutes in a narrow tube with a bunch of loud noises – isn’t really that big of a deal. What is a big deal is what the waiting does to my parents . . . waiting, worrying, crying. I feel helpless for them. How can I reassure them? How can I reassure myself?

Sigh. Here is a Tom Petty song that speaks to me at the moment: The Waiting.

So, back to the “routine” questions and paperwork and the “routine” MRI . . .

So what will they do if I were to answer yes to “Are you claustrophobic?”  Would they not put me in the MRI tube, not do the imaging that my doc has requested? So I checked no, because it doesn’t really matter how I feel about having the MRI and being put in that noisy tube. What matters is that it has to be done. So I took a deep breath (and a valium) before going in and prayed pretty much the whole time . . . Our Father who art in heaven . . .

I tried counting how many times I could say the “Our Father” all the way through without forgetting where I was . . . I didn’t get past “hallowed be thy name” very many times (MRIs are pretty noisy – despite the ear plugs they have you wear). For me, noise is a big distractor post chemo. But, I think I got through the whole prayer at least a few times. I know my parents prayed and so it goes. We pray and we hope and we wait. And all along I know that someone else out there has it far worse than I do.

So for those of you who have not experienced the joy of an MRI, here is a little bit what it is like. You lay down on a bed of sorts (hardly a bed, but more of a platform that seems to be designed for thin people . . . I’m just saying . . . maybe it is because I went to an imaging center in Newport Beach – the plastic surgery mecha of Orange County). Once you are on this thing, they place a plastic cage like thing over your head  (this head gear thing they put over your head looks like something out of “Silence of the Lambs”. I kept thinking “Claaaaaareeeese, Clareeeeeeeeeeeese” . . . yeah, I know, a little creepy). Then they send you on your way into the tube (oh there was also an injection of contrast fluid – which THANKFULLY did NOT require the placement of an IV – WOO-HOO)!!!!!!!!!!!!

So how weird is that to be splitting your time between thoughts of “Silence of the Lambs” and “The Lord’s Prayer”? Odd, I know.

I try to take all of this stuff with a bit of humor. But, unfortunately fears are not very funny; especially the fears of my parents.

So if you would, please say a prayer and/or send some positive vibes my way for me and for my parents.

Thank you so much.

Love and peace,


I have a stalker . . . maybe he was sent by Komen . . .

3 May

Hi Everyone,

I would like you to meet “Nick” . . . my stalker . . .

Some time back I wrote a blog post that was critical of the Susan G. Komen Foundation (I have written many that are critical of SGK, where their money doesn’t go, etc.). But, one in particular has especially agitated a Komen supporter (or perhaps, he works for Komen . . .  I would not be surprised actually, since it is a fact that Komen employs people to cull the internet to seek out people like me who dare to question their – SGK’s – tactics and dare to question where all the money goes).

Here is the post that this person has found to be so offensive (my truthful account of how I was treated by SGK):

Komen Foundation: Please Leave Me Alone

And here is the “comment” Nick left for me (which you can also see if you go to the actual post above, click on the comments link and scroll down to about the 52nd or 53rd comment and this is what you will find):

  1. nickqwellsApril 26, 2012 at 8:18 AM Edit #

    Shame on you, Susan G Komen is a great organization. I could understand them not giving co-pay relieve through partnered organizations (the only form of financial relief they have) to a Law Professor, that apparently didn’t qualify, when there are more financially troubled people with cancer. 82.5% of the money they earned went to programs. Only 7.6% went to administrative costs. It is sad that you had cancer, but it is even sadder that you are throwing fit that they didn’t directly give you financial resources to help pay your bills.

    Here is my reply (I first posted it on his blog and then cut and pasted it as a reply to his comment on my blog):

    • cancerfree2bApril 30, 2012 at 10:30 PM

      Hello Nick,

      Nice of you to comment on my blog about something you nothing of . . . my financial difficulties during a cancer diagnosis. You are a jerk. How dare you tell me “shame on you” for daring to critique the Susan G. Komen Foundation. I have written the truth about how they mistreated me and my story is NOT unique.

      They are not who you think they are. I know first hand what they are like, as well as what they are NOT about (and they are most definitely NOT about a cure). And as for your claiming to know how I was employed – or that I was even employed at the time I was going though chemo – SHAME ON YOU – you really are a piece of work. You do not know me. But, if you’ve read my blog you will know that I never had an opportunity to apply for the financial assistance that Komen brags about providing because they NEVER answered their phone calls – I called over 100 times and NEVER, not once, did anyone answer. And by the way, not that it is any of your business – I wasn’t physically able to work due to multiple surgeries, months of chemo, radiation and over a year of cancer treatment and complications. But, none of that matters to Komen – they dangle out a phone number to call for financial assistance and yet no one answers it. It is a scam. How dare you claim to know my situation when I was going through treatment. Shame on you for your arrogance.

      I highly doubt you will post my comment – especially since you don’t actually blog yet (although I do like your catchy blog name: “Nicholas Well’s World”. Welcome to my world, Nick. It is a parallel universe to yours – it is called REALITY. Why don’t you do a little research (like the rest of us have) and wake up! I don’t really care whether you post this comment – I just care that you read it. I am going to share your comment with everyone I know in the cancer blogosphere – those of us who have been onto Komen for some time – and you will likely be hearing from them too.

      Have a nice day.

      Oh but wait . . . there’s more from “Nick”:

      • nickqwellsMay 1, 2012 at 7:48 AM

        Reality? Oh, the reality where you are the only person to have had cancer? The reality, where there is no way that a person criticizing your blog has an idea of what cancer could be like, because your the only person to have survived it, even though he has experienced it first hand? The reality of lambasting others because they didn’t help you? The reality that they didn’t answer the phone which must of been out of spite towards cancer patients.

        It is sad that you denounce such a great organization when they have helped others but failed to help you. That kind of logic is like saying a vaccination is terrible because 1 out of 10000 people die from a vaccine that saves you from a virus that kills 1-100 people.

        I am curious too, did you get a hold of them, because you say you never got a hold of them and then later on in your letter to them you say they did eventually talk to you and redirected you to organizations that could possibly give you financial support (Which is what they state on their website). How about being grateful to being alive and understanding that you still have nice clothes, a computer, a car, a roof over your head, and a job even though Susan G. Kommen didn’t help you… wait you really must have needed their financial support. Stop thinking the world owes you.

        So that is what Nick had to say . . . anyone care to comment?

        (I personally find his claim to have knowledge of my having “nice clothes”, a “car”, a “roof” over my head and  “computer” to be a bit disturbing. Kind of creepy, actually).

        BLECH . . .


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