The first day of the rest of my life . . .

1 Feb
Dinner in Santa Monica . . .

Dinner in Santa Monica . . .

I have graduated back to seeing my oncologist every six months again. Progress. During my last visit it was changed back to “Let’s see you back here in a couple of months and then we’ll see…”

It felt like a set back at the time. And what is so crazy about all of this cancerland-post-cancerland-landscape is that the first time I graduated from seeing my oncologist from every three months to every six months…I nearly lost it…the idea of not having a net…as if seeing her would somehow prevent the cancer from coming back…this from a person who prior to cancer hardly took an aspirin and saw a doctor once a year because…well you’re supposed to do that…but for no other reason.

Maybe it was because I had become so used to the, at first weekly appointments, with not just one oncologist…but sometimes two (my insurance provided oncologist was an idiot and nearly killed me…but I had to see him to get chemo and Herceptin locally).

My first “every six months” appointment was kind of scary to accept. In fact, I didn’t actually accept it…I asked if we couldn’t just go from every three months, to every four…and my oncologist (also affectionately known as “the rockstar”) smiled and said, “Tell you what…we’ll split the difference and make it five months” 🙂 And so it went.

But now I am grateful for the “every six months” status . . . and celebrating this little milestone…this little piece of progress that creates a little more peace in my life.

And there are other reasons for peace re-entering my life…

For now, I am just going to share that I am celebrating…everything…and purging…at least, as much as possible, the concept of fear.

At, least, for another six months…

Much love and peace and many thanks for your prayers,


P.S. I do have a breast MRI on the calendar (well, to be put on my calendar) but, it is routine and only being ordered because it is time to have it done. So, for now, all is good and I am celebrating.

And yes…I am having tiramisu…


The Cancer Tunnel . . .

31 Jan

I went to see the genetics counselor this week. I saw her the first time when I was going through treatment. My parents went with me then, three and a half years ago now. I was told to bring a family member with me . . . especially if I could bring my Mom or Dad or both . . . “to go over our family history” . . . a cancer genealogy of sorts.

I was bald. I was too thin. I was pale. I was facing a lot of unknowns and trying to be strong for my parents and trying to . . . act normal. But nothing was close to normal. We all pretended pretty well. Jeannie, the genetics counselor greeted us and took us back into a room – a makeshift, mini living room . . . where people come and go and attempt to act normal.

Genetic testing

Genetic testing (Photo credit: Wikipedia)

Come on over and sit for a while and pretend this is all normal.

And yet, for so many, it is normal. It is what has had to become normal.

I remember being surprised by the almost evening time feel of that little room – no day light came through and there were no fluorescent, clinical type lights, but instead a small couch, a couple of chairs and a lamp  on a coffee table. It was this forced space inside the cancer center (just outside of this room are chemo beds, doctors and nurses and every clinical thing you could imagine . . . and lots of very sick people).

That day is largely a blur now – other than the odd juxtaposition of chemo beds, IV poles, cancer patients and medical staff with this little, dimly lit, almost cozy, forced space where we were gently guided by Jeannie through medical terminology and explanations of gene mapping. At the end of that session it was Jeannie’s recommendation (based upon my family history) that I have genetic testing. She knew it would be denied by my insurance company and attempted to prepare me for a fight . . . that it needed to be done and that she would help me through the appeal process (after the inevitable denial).

She had already helped so much – by educating me, my parents, but mostly by listening to my parents, answering their questions and being so gentle with them. My parents are brilliant people. Jeannie was everything they needed that day: smart, informative, calm, honest and gentle all at the same time. She was so kind to my parents and so understanding of their need for truth, but also for their need for hope.

10% was what I had been told . . . that I had a ten percent chance of being here today. Today. Wow. Incidentally, I did not share that statistic with my parents . . . or anyone at the time. However, it did and still does, affect how I live and think about my life.

This is me and my Dad – we are both cancer survivors 🙂 He is 83 years old.Me&DadSurvivors

As Jeannie predicted back then, my insurance company denied the request for genetic testing (to see if I carry the BRCA 1 or BRCA 2 gene). She attempted to prepare me to fight my insurance company. But, I didn’t have it in me to do it. I decided to preserve all of my energy for other battles (which were seemingly constant back then).

So this week I arrived back at the cancer center, with the infamous “cancer tunnel” (yes, they call this very long walk way that takes you from one part of the facility to the cancer center “the cancer tunnel” . . . I still can’t believe that . . . but, I digress).

I met with Jeannie again this week – she was the same peaceful, calm and gentle being that she had been three and a half years ago when I was a complete emotional wreck . . . and when my parents were daily grieving (as was I) my illness and prognosis and all of the fear and anxiety that came along with that.

Jeannie remembered me and remembered my Mom and Dad. She explained how the testing is more extensive now and that my insurance company had already approved the testing – so it would be done that day.

No fight, no battle – it was approved. And now, you get more for the same blood draw (more extensive testing, that is). Yippee! (The blood draw took two nurses and three attempts – my body is done with treatment, done with needles, done cooperating . . . the nurses felt really bad for the number of pokes . . . but, I kind of thought it was funny – the fact that my veins were seemingly running away from them). Veins can be very visible and present and look like they are perfectly read to be tapped and then . . . they can run and hide. That is what happened . . . as if my body was saying get that thing away from me!

So, I had a little victory this week – as I was fully prepared to have to come up with the four grand to have the genetic testing done. It is important now because I may make decisions based upon the results (do I keep my ovaries for example . . . are they ticking time bombs . . . or can they stay) and there is the matter of Jujubee who is now 20 years old – does she need to worry about this breast cancer thing in the sense that it is truly in our genes? So, I need to know now and now I get to know without having to come up with thousands of dollars. Yay 🙂

I am on my way to Santa Monica today . . . seeing my oncologist . . . it is a somewhat routine appointment. Although it is two months early and it is on the anniversary of my first “suspicious” mammogram . . . the day cancer entered my life in the first real way . . . I knew it that day when the results were “suspicious” that all of my tiredness now had an explanation.

So, I am bringing my list of things that I both hope will not lead to scans or MRIs and hope will lead to further testing. Such a weird place to be – hoping and not hoping for the same thing. I have had pain that I shouldn’t have – that always causes worry for someone “post” cancer (as if there is such a thing, but, you know what I mean). So, I worry a bit.  But, I also have been working a lot and doing a lot and not swimming and not stretching and I did have that fall . . . so there are explanations for it all and we will just see what my oncologists thinks. I think she will say we should wait a few weeks and see if the pain continues and if it does continue, then she can order scans.

This is weird post, not at all really about what I want to be posting about. There is so much going on (and not going on) in cancerland that I want to write about. All of the fallout for Livestrong and the continued nonsense of Susan G. Komen (trust me, I will be back on that soon), survivorship, and Rachel. Rachel who died last year. Rachel who was amazing and who is missed by so many. I miss her. She was amazing, insightful, possessed a sharp and incisive and unmatched wit. She made things happen and to this day, her blog and her words continue to change the face of cancer. Here is a beautiful post dedicated to Rachel written by my friend Kathi, the author of the blog: The Accidental Amazon – check it out here: Accidental Amazon

Say some prayers for me and say some prayers for Rachel’s family and friends who are nearing the one year anniversary of her passing. She is so very missed. You can read more about Rachel here at The Cancer Culture Chronicles


I Can’t Give You Anything But Love, Baby . . .

31 Dec

One of the many things I am grateful for in my life is music – in particular – my Dad’s music. I truly believe music promotes good health and healing. I was fortunate to grow up hearing live music every day of my life. My Dad is an amazing pianist, composer and arranger. He can truly play anything. I grew up hearing Rachmaninoff’s third piano concerto – performed by my Dad in our living room. He has composed many original works as well as arranged popular and classical pieces.Christmastree

In what now seems a life time ago, my Dad and I performed together 6 days a week (five nights and Sunday brunch). It was how I paid for graduate school. But, more importantly, it was fun, sheer joy. Nothing replaces playing that often – no amount of practice is the same. So I have, to say the least, lost whatever chops I ever did have. But, it is still a joy to play with my Dad.

So, here’s a little bit of me and my Dad playing on Christmas day. My bass playing isn’t so great on this – it is a fast paced song that I haven’t played in a long time, so it was a bit hard to keep up . . . but fun. (Also, the fall I had down my stairs was just before this little number . . . I didn’t know I had really injured myself yet, looking forward to getting better and having an easier time lugging my bass around) 🙂

My Dad is his usual amazing self . . . have a listen (the link below will take you to youtube – haven’t figured out a fancier way to do it than this) 🙂

By the way, my Dad is a cancer survivor too!

I Can’t Give You Anything But Love Baby

Happy New Year to everyone! I wish you health and all good things in the year to come!

Love and peace,


Some days are simply back breaking . . . LOL

29 Dec
Red Rock Crab, Cancer productus

Feeling a little crabby after falling down the stairs. I wonder if my bones are stronger or weaker than this crustacean’s?

Okay, maybe this isn’t funny, but it is to me.

First of all, I had an amazing Christmas with my family . . . truly memorable. The only sad part was that more of my family couldn’t be there (I missed my beautiful niece and nephew and one of my brothers – their dad). But, fourteen of my family members were able to come over and we had a great time. We had a tappas Christmas (my new thing post cancer). I will post pictures soon.

I made a sangria this year and it was colorful and beautiful. I also made several other dishes as did family members, it was a wonderful feast, but most of all it was just a wonderful day with family. We played music (my Dad played the piano, Christmas songs as well as some great jazz standards and I joined him, to the best of my abilities, on the bass. I have some video of his playing that I will post here soon.

I learned knew things about them, interesting things and it was so wonderful to have an opportunity to catch up with them and to learn about what is going on in their lives. So often it has been about “how are you doing Lisa” and so “are  you good now?” etc. It was nice to not have it be all about me and my trials and tribulations . . . it was a much needed and pleasant escape from cancerland.

And then I slipped while walking down the stairs (I swear, there was no Sangria involved – I was wearing stockings  – no shoes – and walked down my carpeted stairs and my feet slipped right out from underneath me and down I went . . . down several steps to the bottom landing on the tile floor. It was quite a jolt (several jolts actually). But, I thought I was fine and would just be sore.

The next day I was in quite a bit of pain. By the second day it hurt to breathe, I’m figuring now at this point it might be more than some bruising. So I go into to see my doctor and dang it if I don’t have stress fractures. Chemo can weaken your bones. I have had bone density tests and have been told that I have osteopenia, but that it “isn’t bad at all”. I have come to learn that when someone tells a cancer patient that “it isn’t bad at all” that this means that it is bad, it just isn’t bad given the possibilities of bad – it is like a bell curve of sorts (I think). It ranges somewhere between “you have the ‘good’ kind of cancer” (whatever the bleep that means) to “I’m sorry . . . ” (that means you have the really bad kind of cancer – as if there are good kinds). The point of all of this is that I am a success story – so far. I am alive, I am seemingly healthy. I made it through an aggressive cancer, through aggressive treatment and came out of it N.E.D. (no evidence of disease). I have even had my oncologist on occasion refer to me as “cured”. All pretty great things. So in the scheme of things, when you look at the possibilities of what could have happened (never surviving treatment, etc.) having osteopenia really “isn’t bad at all”.

But, now I realize that it means that my bones can break. This can happen to anyone. But, it can happen to me more easily than some and certainly more easily than most people my age. But, I am not one to compare myself to “most” people. It doesn’t help me much. I am in a lot of pain right now and I am limited in what I can do physically for a time. But, that is it. It will get better. And in the scheme of things . . . “isn’t [that] bad at all”

I am disappointed that I will not be able to run the half marathon I signed up for – it is in six weeks – I should be running most days right now to prepare for it. There will be no running for some weeks. Not sure how many, but I am definitely not going to be able to prepare adequately for running a half marathon by February 3rd. So I am planning on walking it again (walked it last year, promised myself I would run it this year . . . oh well . . . maybe next year I will run it).

So I am disappointed. I admit, I was really depressed about this a couple of days ago. But, now I am resigned to it, it will get better, I will get better and hopefully I will get some help with things around my place (lifting is not on my agenda right away). Oh, I really should post the list of things that I am not supposed to do – it is quite hilarious – apparently I am not allowed to go taboggening or snowmobiling (although sledding was not on the list . .. hmm). It is a pretty funny list.

I am going to try walking on the sand (not sure if that is going to hurt more or less than walking on a sidewalk) and I am going to increase my swimming as much as possible (I still have this fantasy where I will actually be able to pull off running at least some portion of the half marathon). But, I am not going to be stupid about it.

Well, I should be sleeping.

I wish everyone a very Happy New Year!

Love and peace,


Coming up for air . . .

11 Dec

I don’t even know where to begin. I have started to write a blog post so many times in the past several months, but have not been able to finish one. I have so many “saved drafts” of what should be a simple, easy thing to do – writing a blog post – but nothing. I haven’t been able to get past the first few paragraphs because if I were to continue with something I would actually make public, well. then it would not be true.

So instead, my only contribution lately has been to re-iterate my complete disdain for the Susan G. Komen Foundation, Nancy Brinker et. al. and that is about as far as I can get.

I just haven’t been able to speak personally here at all. It is just too much.

It is all fine and good when all you have to say is that the coast is clear, things are getting better, “I’m feeling stronger every day”, “everything is so much better now”, “cancer is behind me”, oh and let’s not forget my favorite: “I’m so grateful”.

First of all, I am grateful. Grateful to have celebrated, just a few day ago, another birthday. A birthday that a few years ago I had about a 50/50 chance of having . . . so yes, I am really, really, really grateful.

But, for some reason, as I make my way back to a more normal life post cancer, I am finding it harder and harder to cope with post cancer life. Because, you see, there is no real return to your life before cancer, there is no “cancer is behind me” – at least not in the sense that cancer ends and you go right back to the way things were before. And, I am not saying that I want to go back to the way things were before entirely. But, let’s just say that I liked feeling like I had a path and I knew what that path was and I was able to handle my life.

So I haven’t had much to say here. I jumped in only once during the month of October and that was simply because some idiot posted a nasty (and mostly just ignorant)  comment on one of my posts from last year where I asked Komen to leave me alone. I had to respond to this person because, well, I had to. I highly doubt that my reply has convinced this person to stop drinking the Komen Koolaid, but, I gave it my best shot.

I find it is easier to express myself in areas cancer related when it is confined to the following situations 1) talking with someone who is newly diagnosed and who needs some support, encouragement (“look at me, I am fine, you will be too”, etc.) or 2) calling out Komen for their misleading use of “for the cure” when in fact they (in my opinion) are more interested in their own commercial branding, the PINKWASHING of corporations and the continual re-perpetuation of lining their own Komen pockets and the pockets of those companies for whom they sell their pink ribbon in the name of pink washing . . . NOT the cure they constantly profess. (For those who have not heard of the term “pinkwashing” it refers to the practice of companies who produce products that actually cause or increase the risk of cancer paying for a pink ribbon – a “for the cure” stamp of approval – which then leads people to further purchase these cancer causing products, consume them and actually feel good about it). Pinkwashing is bad. But perhaps one of the most horrific things that Komen does is to to claim that they are “for a cure” and yet only donate somewhere between 14% and 19% of the money they raise in the name of a cure to research. (Some years Komen has raised nearly $400 million dollars – just think that if instead of only donating about 14% of that money to research, they donated 50% or 80% . . . now that would be something, wouldn’t it)?

See . . . this is all I feel comfortable writing about. It IS important to tell this story of Komen – the very true, very wrong story that IS Komen.

BUT, I have a life. And that life is one that has become increasingly difficult to share about here, online. I have felt guilty about not sharing here. I feel as though I have abandoned a commitment that I made. There are a group of women bloggers who are devoted and passionate about writing – this is true awareness (and it is awareness that Komen does NOT provide). There are women that have taken up the cause in every way and continue to do so, they don’t give up – women like Anne Marie at Chemobrainfog, Kathi at The Accidental Amazon, Phillippa at Feisty Blue Gecko, Nancy at Nancy’s Point, and so many others (I have so many to add to my “blogroll” here. In fact, my next post will be a list of bloggers I think you should follow, that I wish I had more time to follow). And sadly there are so many newly diagnosed women who are now joining us here on the blogosphere.

In the beginning I wrote to let family and friends know how I was doing. It was far easier than making phone calls since most of my days were about fighting with my insurance company and simply keeping up with treatment and the sometimes 6 medical appointments in one week. It was a full time job.

Now as I have returned to my real full time job there are many adjustments to make. It has been hard. There was a cancer scare last summer that seemed to trail into the fall and take over the past several months. Fortunately all turned out well. But, it was a series of tests, biopsies and finally a surgery to remove the (thankfully) not so offending tissue. It wasn’t fun. But, as the anesthesiologist told me before I went into surgery last month, “this will be a breeze compared to what you’ve been through”


I didn’t know whether to find peace in that statement or to simply cry. I did take solace in that whatever was coming was not going to be as bad as whatever had happened before. But, it did really strike a chord with me – that this surgery was going to “be a breeze”. My life since 2009 has been anything but a breeze. But, whose life is? I recall days I could barely walk and the friends that would take me on walks because I couldn’t go alone and so desperately wanted to walk . . . they went with me, walked as slow as I needed to go so that I could get that mile in if I could. Those were some days.

And now I can run. And now I can work a forty hour work week (and then some). And now I am getting my life back. But, there is an expense that comes with that – a lack of balance I guess. I am grateful to be rebuilding a business I had to close down because of cancer. I am grateful for the opportunity to start over. But, I am tired. It is so hard and it is so difficult.

To be reliable in my business, I have to be unreliable in my personal life. That stinks. I hate that. But, what choice do I have? I have been clawing my way back with every ounce of my being to regain whatever I can – physically, financially. To do those two things I have little time or energy for anything else. I am trying to create a new version of my business, one that will fund a more balanced life. But, until then I am working very long hours after which I pretty much just go to bed. I communicate with few people and go out rarely other than work related things. I am determined, so determined to get my life back. But, I am grateful for what I have today and I am hopeful for a future that enables me to do more of what I want.

I miss spending time with friends and family. I miss having time to connect with my friends and family. And, I miss writing here too. I hope to be back in more ways than I am now. But, I am here and so grateful for that. This most recent birthday was amazing. I truly did not think back in early 2009 that I would be here now in 2012. I will never forget what my doctor told me when I asked her if I could survive this. She said, “The best thing in your favor is your youth and that you are physically strong . . . fight”

Those were chilling words for me. When I pressed for statistics I was told not to think about numbers (of course this was because the numbers for me were not good). But, that time is gone now. Those days are over. And now I look toward a future where hopefully I will remain cancer free.

It is hard to keep your eye on that prize sometimes . . . I have lost three friends to cancer in this past year alone. I have seen two more friends diagnosed with cancer. It is an epidemic and it seems to be one that is affecting younger and younger women. Of course I am no scientist. I am simply going by what I see. We need to do something. Komen is not it. (I know, I always come back to that). But, clearly what they are doing is not working. We need real money going to a cure. We need research funded for all types of cancer and in particular – the kind that kills – metastatic cancer.

Well, now maybe you will understand why I haven’t posted anything here in so long. This ramble, jumble of a post is going to be posted. To those of you who have been unable to reach me, who I haven’t called back, or been able to see, please understand why and please accept my apologies. I hope that next year will be one where I am able to have more balance and  can do more than simply work 🙂 But, I AM so, so, so very grateful I am able to work like I am right now. It is wonderful.

I wish everyone a wonderful holiday. I will be spending mine with my family – we will be doing our third annual Tappas Christmas (that is how I celebrate Christmas now post cancer – no more boring turkeys or crown roasts for this girl . . . I’m mixing it up).

Much love to you all and thank you for your continued prayers.


P.S. To everyone who has tried to reach me, please keep trying and don’t give up on me. It is not because I don’t love you, I am just doing the best that I can. Things will get better 🙂 I appreciate your understanding. Happy Holidays.

Me and my niece last summer :)

Me and my niece last summer 🙂

Pinktober is almost over . . .

30 Oct

I haven’t written a blog post in a while. I set out to write one today and saw that I had a comment from Jenn (see below) on an old blog post entitled: Komen Please Leave Me Alone

Here is Jen’s comment – I just had to share (you will find my response to Jen below her comment).


Submitted on 2012/10/09 at 8:18 PM

Truly sorry that you had an awful experience with NY Komen. That never should have happened – and wouldn’t happen at many other affiliates. I am confused though. Do you want the money to go to patient assistance or to research? Yes Komen ONLY gives 20-25% to research because the other 75% is granted out to the local communities. And Komen gives more to breast cancer research than any other group outside of the government. As for not getting finanicial assistance to help you that depends on the grants in the area. If no one applies for a grant to do this then what is Komen supposed to do? I agree “For the Cure” is misleading but who knew 25 years ago how complex breast cancer was. We all hoped for a quick and easy cure – now we know with science that it will take more. As for the emails from Komen – I suggest you use the unsubscribe button at the bottom of the email and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on…

Here is my reply to Jen:
Panera Bread

Panera Bread is supporting Dr. Susan Love’s Army of Women – Good for them! (Photo credit: Wikipedia)

Submitted on 2012/10/30 at 10:21 AM | In reply to Jenn.

Hello Jen,
I think you are the one that doesn’t know what you are talking about. First of all, Komen does NOT give “20-25% to research”. Your numbers are wrong. To answer your question: “Do you want the money to go to patient assistance or to research?” here is my answer: I want Komen to stop being a fraud. I want Komen to stop claiming to be “for a cure” when they are not – no organization that puts more than 80% of raised funds to things OTHER than research can claim that they are “for a cure” for cancer. That just doesn’t add up. I want Komen to stop misleading all of us. And, I want Komen to stop claiming that they help patients with their treatment costs when in fact you can’t ever get anyone to call them back – ever.

You need to read more carefully – Komen’s marketing people are emailing me directly – they use the email contact through this blog to contact me. It is not the email list that bothers me – you can unsubscribe from that once you find out that all Komen wants is your money. The emails from Komen that I am referring to are the ones that they send to me directly through this blog – from their PR and Media people trying to get me to stop telling the truth about Komen. That is despicable. They never answered a single phone call, never returned answered or returned any calls when I called their patient support line over 100 times – but when I complain about that publicly and call Komen out for who they are – I get email after email from their PR and Media people. Just a little disingenuous don’t you think?

You don’t know what you are talking about. I haven’t found a single chapter of Komen that has anyone that will take your call or return your call from “patient assistance” – if you ask me – it simply does not exist.

Anyway, the NFL and others have figured out that Komen is NOT worthy of support. Haven’t you noticed that with many large organizations Komen has been replaced (the NFL supports The American Cancer Society now – they dumped Komen this year). Many other organizations have followed suit. Now when I see a pink ribbon on a cup at Panera Bread I smile because I know that the money is going to something worthwhile – Dr. Susan Love’s Army of Women.

I am thrilled to see that Komen’s stronghold is starting to diminish. I was one of several people that asked for Nancy Brinker to step down. I know she is still there – but she has been rightfully shamed.

I am glad that you agree that “For the Cure” is misleading. Komen is misleading and they only respond when their is huge public outcry. It used to be when I criticized Komen that people would take offense (I am in Orange County where Komen boasts one of its largest chapters) but, now times have changed. Most people I talk to now are on to Komen. No one likes it when they hear that according to Reuters only 14% of the money Komen raised went to research. In fact it is making people pretty angry. It is nice to see that the climate here in Orange County has changed. It is making room for organizations that really do help people get funds. Komen is losing ground and I would like to think that I have been a part of that – that is awareness – making friends and family and blog readers aware of what Komen is really about.

Your last sentence: “unsubscribe . . . and then they won’t bother you anymore and you won’t have to complain about it anymore without knowing what really goes on” is priceless. YOU clearly don’t know what “really” goes on – what really goes on is that Komen only donated 14% of the money they raised in 2011 to research. You can claim all you want that Komen donates more money to research than any other organization but the truth is that they pocket the money and dump it in to salaries and “awareness” and “education” (whatever that is). People are dying. The fact that Komen only used 14% of the funds that good hearted peopled donated “for a cure” to actual research is despicable. They have taken the lion’s share of the money raised for breast cancer research, and instead of putting it towards research, that money goes to six figure salaries, pink-porta-potties, pink golf carts and failing races for the cure.

‘nough said.

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 . . .


        Related articles:

AWOL (A Way of Life After Cancer)

30 Mar

Hello All,

I was recently asked to join the board of “From Chrysalis to Wings” which is a non-profit that assists cancer patients. The organization is completely volunteer run – no one takes a salary. From Chrysalis to Wings puts on The AWOL retreats (A Way Of Life after cancer retreat). These retreats are restorative retreats for women cancer patients. “From Chrysalis to Wings” has been putting on these retreats for the past ten years and has served thousands of women.

I was fortunate enough to be able to attend one of these retreats and it truly changed my life. It is hard to explain the effect of these weekend retreats, but, it was truly profound and life changing for me.

As a result, I am very passionate about helping this wonderful non-profit be able to host more retreats and to provide more support services to cancer patients.We have a fundraiser next weekend. It will be held in Oceanside – so any of you who are local and are interested in attending – please let me know and I will get you the details. I also have a few extra tickets that I purchased and want to give those to anyone who would like to go. It is a lunch and “Quartermania” event. Lunch is provided in the cost of the ticket. It is a fun event and is for a great cause. The “Quartermania” is a type of auction where items are auctioned off from one up to four quarters per item (everyone who is interested in bidding on the item parts with the requisite number of quarters – 1 through 4 – depending upon the value of the item being auctioned off – and then one person is selected to win the item). There are ten vendors who each are bringing ten items for the auction. The auction is fast paced and fun and guests are able to win items worth as much as a $100.00 for just a few quarters.

In addition to the auction, we will have opportunity drawings and are in NEED of items for the drawings. All funds raised at this event will go directly to cancer patients . . . 100%

We really need items to auction off – so if anyone has a business that would like to make a donation – please let me know. This is a 501c Non-Profit and we will provide all documentation of your donation so that you can have the tax deduction. If your company would like to donate money for a gift basket, that is an option as well (we will put the gift basket together for you – for a $100 – $125 donation). I am currently reaching out to Target and Home Depot for gift cards. I am new to this, so any suggestions or ideas – I am all ears (and fortunately the existing board is amazing and they DO know what they are doing) 🙂

If you would like more information, please contact me at:

Here is the flyer for next weekend’s Quartermania: Quartermania Flyer

Here is a link to purchase tickets if you are able to attend: Quartermania Tickets

Please contact me if you think you might be able to use one of my tickets.

Love and peace,