Tag Archives: Conditions and Diseases

Easter has become my Thanksgiving . . .

31 Mar

Last weekend I was invited to attend a blogging summit. The summit brought together cancer survivors (some 15 or more years out, some just a year out and some still in treatment). All of us blog or have blogged about our experience. We were also joined by medical practitioners (of many types: oncologists, radiology oncologists, naturopathic MDs, nutritionists, lymphedema specialists, nurses and and more) as well as care providers (who also blog) and other writers, journalists. I will write more about the blogging summit in a future post.

For now I want to simply say that being able to meet the amazing cancer survivors (some of whom I had only known online, in the virtual world, and some I had never met – virtual or otherwise) in person was truly incredible. I felt like I was meeting soul mates. There was just an immediate understanding of all things amongst us. That is the best way I can describe it.

There is a loneliness that cancer can visit upon you; does visit upon you I think (at least it did for me). I felt it most prominently four years ago – when all I wanted to do was to escape my body, run from it since it was, after all, seemingly trying to destroy me. It was a very strange sensation – one of being removed from seemingly everyone – despite the conscious and amazing presence that so many individuals in my life made to be there for me. I still felt so isolated. I was the one that could die from it and I was the one that had chemo coursing through my veins . . . you get my drift.

When cancer hits you are truly alone – at least with your cancer and your body. No one else has exactly the same thing, no one else will react exactly the same way (to treatment, to fatigue, to the pain, to the fear, to it . . . to cancer). No one can really tell you when you are in the throes of it whether you will make it or whether you will survive. And all around you there are both stories of survival and life as well as that of loss and death. And none of it makes any sense.

So back to the blogging summit. CTCA (Cancer Treatment Centers of America) hosted their second “blogger’s summit” in Arizona. I was fortunate enough to be invited . . . wow was I fortunate.

I met so many wonderful and amazing individuals at the blogger’s summit. To say that there is a kinship amongst those of us who are “survivors” and writers does not really quite capture it; not the depth of it anyway. It is something indescribable and quite frankly took me a bit by surprise. And, it is beginning to fill a void that I have felt for some time.  That sense of being removed from those around you; that loneliness . . . some of it that still lingers is melting away . . . a little. Meeting these wonderful people, with whom we have shared experience (that we wish we did not share) has helped me to feel less alone; less fearful.

The moment I became a cancer patient I became different. I was on the outside, removed somehow from everyone else . . . lonely.

At the summit we spoke about many things, there were presenters and questions etc. But, what was absolutely the most meaningful was the time with others who have been through, or cared for someone who has been through cancer (because they understand). We joked about cancer – not something everyone is comfortable doing. And we shared our stories, some of our fears and we talked about a future without cancer and survivorship. This was a room full of activists – women and men who want to spare others from having to either go through this disease or to at least spare them from having to go through it perhaps the way we did. And of course, we don’t want to go through it again ourselves.

I am so grateful for the time with these amazing individuals. And I look forward to these new friendships.

I am four years out from my diagnosis. I began treatment the week of Easter.

As someone who was raised Catholic, Easter has always had some meaning for me. But it is all the more meaningful for me now. Four years ago it was my first Easter with my youngest nephew . . . just a little baby then (who has now grown up into an exceptionally bright, talkative, engaging and delightful four and a half your old boy). That first Easter with him was very surreal.

A week into chemo, still a full head of hair (that was due to fall out) and the ever present thoughts of whether I would be there for his next Easter . . . all of that was surreal. I remember drinking up every moment with him and with my family that day. No one competed with me to hold him . . . the newest baby in our family. No one took him from my lap. No one. And although it was never said – we all knew why: it might be the last time I got to hold that baby.

I actively pushed away thoughts of whether he would he ever know his Auntie. But, I know it was a very present and real theme of that day, for all of us . . . for all of us except for the baby 🙂

Now he is four and a half. He knows his Auntie.

He pushes away pictures of me where I am bald and says “no, no, no”. . . he knows it is me in those bald photos. But somehow he knows that it was sick Auntie or at least not the Auntie he wants to see. And, in spite of the fact that some of those bald pictures with him are my absolute favorite, I kind of like that he now pushes those photos away . . .

These are a few of my very favorite pictures I possess:

April 2009, my nephew’s first Easter, a few days after my first round of chemo and a few weeks before I would be bald.

More of the same day . . . the only family member who could truly freely enjoy the day . . . what a gift he was and is . . .

July 2009, was still going through chemo. This is one of my favorite pictures . . . but, my nephew doesn’t like it 🙂 So I keep it to myself 🙂

So on Easter of 2009 I wasn’t sure if I would make it to Easter of 2010. Easter 2010 came, and I decorated Easter eggs for my nephew’s first Easter egg hunt. I was still in treatment then, very tired and still not sure I would make it to another Easter. But, again, my nephew, aware of none of these things, was an incredible source of joy and energy for me. Here he is delighting in his very first Easter Egg Hunt . . . that I was very grateful to be around for . . .

Happy Easter! My nephew Garrett, sheer delight!

Easter 2010 🙂

 

 

 

 

 

 

 

 

 

Happy Sunday and to those who are celebrating Easter, Happy Easter. I hope for many more Easters for all of of us.

Much love and peace,

Lisa

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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”

LOL

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.

Lisa

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 🙂

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Komen Koolaid . . .

11 Mar

So, Julie of Orange County Komen sent me an email in response to my email in response to her email in response to my blog post: Komen Please Leave Me Alone

Here is Julie’s/Komen’s response to me (first, you may want to read the post below, from Friday):

“Hi Lisa,

I was not the person “chosen” to respond to you. In my position, it is my responsibility to be in the know about what is being said about our organization; your blog past came to me in an alert as did the post you shared with everyone today. My concern was not just to remove you from our list (however it is also my responsibility, along with one other person here to make sure people who do not wish to receive our information are removed from our list), but to reach out to you as a genuine human being, but as someone who can understand the frustration of trying to get help.

Again, I’m very sorry for the response you got from our organization in 2009. I was not here at the time and like I said, just a person trying to do what they can now. Tell me how I can help and I’m happy to do what I can.

 My contact info is below:

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

3191-A Airport Loop Drive

Costa Mesa, CA 92626

T: 714.957.9157 Ext. 30 | F: 714-619-2678

Our Vision: A World Without Breast Cancer

BEST SCIENCE. BOLDEST COMMUNITY. BIGGEST IMPACT.

WE ARE THE CURE”

First of all, I love the “Best Science, Boldest Community, Biggest Impact. WE ARE THE CURE”(sic)

English: Mahindra 6030 Turbo tractor in downto...

I wonder how many women rushed out to get a mammogram after seeing this pink tractor . . . am I the only one who thinks pink porta-potties, tractors, golf carts, etc. in the name of "awareness" are a waste of money? Of course i am not. Sigh.

So there you have it. NO ONE from financial assistance can bother to get in touch with me, to answer my calls, to email me back, etc. But, it is apparently Julie’s “responsibility to be in the know about what is being said about our (komen) organization” and her other job is apparently “along with one other person” to make sure they remove me from their email list. Wow. Now that seems like a great use of “race for the cure” (TM – wouldn’t want SGK to sue me) dollars, doesn’t it?

Okay, so, giving Julie the benefit of the doubt here – she says she was not “chosen” by Komen to contact me and was instead contacting me as a “a genuine human being, but (sic) as someone who can understand the frustration of trying to get help” (her words, not really sure about the grammar here, but, I think she is simply trying to say that she cares).

Okay, well then DO something. FIX what is clearly BROKEN. Komen claims to provide financial assistance to breast cancer patients, provides a number for breast cancer patients to call – but, NO ONE ANSWERS the phone number!!! HELLO???

I am sorry Julie, but, I am unimpressed with your response. And as far as your asking me what you can do to help, I think I have made it pretty clear in my prior email to you. And, in fact, I asked you what YOU could do to help me NOW (since you said that you wished Komen could help me now; wished Komen could somehow “rectify the situation”).

And, still you reply with – let me know how I can help you? I find this disingenuous. Your organization exhausts me. It is smoke and mirrors and a bunch (in my experience) of getting the run around. I asked YOU how you could help me. I told you what my needs at this time are . . . and I got the above reply. Do I expect Komen to jump in and pay all of my bills? No, but, if you truly care, then why is there no interest on your part to at least look into the broken phone number, the fact that there is no form on your website or email for cancer patients to contact you for financial assistance – and yet your organization brags about providing financial assistance to breast cancer patients in need. Please understand this: your organization invited me to seek financial assistance through Komen’s financial assistance program. I got no response ever. I called over 100 times. My story is NOT unique. I have heard from many women who were treated the same way.

Instead, I feel you have just sent me a defensive reply about how you were not employed by Komen at the time I originally sought help. So what? You work for them now. I realize this may all be out of your job description – but, the very fact that this may be the case, shows how broken Komen has become.

But truly, this is my favorite quote from Julie’s email:

“Again, I’m very sorry for the response you got from our organization in 2009″

Response? Julie, I did NOT GET A RESPONSE IN 2009, or in 2010, or in 2011.

I told you before that I was not angry with you (in my previous email). But, I have to say that now, I am a little angry with you. I don’t like the spin, I don’t like the fact that I am hearing from someone from marketing and PR instead of someone who is in a position to address my experience.

I think you have simply drunk from the Komen KoolAid.

If you truly want to help me, truly want to make a difference in some breast cancer patient’s life, then work on fixing the problem. And, if you are not in a position to do so (I understand that your job is in marketing and PR and to search out the web for what is said about Komen – which right now must be keeping you mighty busy) then get this in front of a person who CAN fix the problem.

I will be sure to include the appropriate tags for this post so that you get an alert as soon as possible.

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No Help For the Poor and No RACE for the cure(TM) . . .

2 Feb
English: Nancy G. Brinker. Chief of Protocol o...

There once was a disease that killed many,But, then big pink cured it with money.Oh, wait that’s not true,It still kills me and you.Does Brinker think me a big dummy?(I wrote this snarky limerick last year, but, thought it fit for today . . . Nancy Brinker is proving she is more about politics than women's health.

I wish I did not have to work today. I wish I did not have to work at all this week or next. Because if I didn’t have to work, I would spend every minute of my time responding to The Susan G. Komen Foundation’s latest and greatest (and by far their most transparent move ever): pulling the plug on funding to Planned Parenthood.

But, unfortunately I do have to work today. So here are a few links to former posts that shed a little light on what Komen is, in my opinion, and the opinion of many others . . . truly about. Also, please see below for what Breast Cancer Action says about Komen’s latest move and please, please, please sign their petition (you will find a link to it at the bottom of this post).

Please check these posts out:

An absolute MUST read: A post about where Komen’s money really goes by The Cancer Culture Chronicles: Komen by the Numbers (check out the pie chart on where SGK’s money goes . . . it is a real eye opener).

My post on how SGK abandons breast cancer patients during their time of greatest need. Another post of mine (simply because I like the title of it: When Pigs Fly)

Another post of mine about Nancy Brinker’s toxic perfume and her refusal to take it off the market after the toxic chemicals (chemicals linked to causing cancer) were made public by an independent lab who tested the “Promise Me” perfume.

And here is a post showing just how little of the purchase price of Komen’s Promise Me Perfume actually goes to ANYTHING by Katie Ford Hall at Uneasy Pink 

And if you are interested in some poetry, here’s some of my Komen inspired poetry.

Like I said, I wish I had all day, all week, all month . . . I wish I had all year to spend on this nightmare of a fraud that Komen has become.

Please see what Breast Cancer Action has to say about Komen’s latest funding cut:

“Women’s healthcare is under assault once again. Susan G. Komen for the Cure is pulling all funding for Planned Parenthood, an outrageous decision that threatens women’s access to vital health services. But what’s particularly concerning is this funding cut will impact underserved communities most . . . Planned Parenthood provides vital health services including screening, clinical exams, referrals for ultrasounds and biopsies, and breast health education, often to women who do not otherwise have access to healthcare. One in 6 women of reproductive age get their healthcare through Planned Parenthood.

We believe all women should have access to the same healthcare. The care a woman receives should not be based on the type of insurance or financial resources that she has or does not have access to—or political agendas. Women’s health is women’s health, period . . . Organizations that are truly committed to women’s health must put women’s health before politics. We stand with Planned Parenthood in our shared commitment to putting women’s health first.”

Breast Cancer Action has a link (see below) where you can sign a petition demanding that SGK return the funding back to Planned Parenthood.

Please sign Breast Cancer Action’s petition to Susan G. Komen for the Cure demanding they put women’s health before politics.

Please sign the petition. Please stand up, please let SGK know that they are WRONG.

All the best,

Lisa

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All Quiet On The Western Front . . .

31 Jan

Haven’t had much to say lately. There have been a lot of reasons for that . . . being busy with work, being in pain (which I think is probably . . . and hopefully . . . because of an increase in work hours and just simply the fact that I am doing more and more).

Tomorrow I have a breast MRI . . . a bit odd, since I no longer have breasts. But, I do still have some breast tissue (after having reconstructive surgery) and since I have had pains in my chest my oncologist wants me to have the MRI. I have some other tests, that I am not so worried about. So tomorrow will be a medical day (used to have so many of those). I hope that tomorrow’s results will be good.

This is a picture from one of the last road trips I took before the cancer roller coaster began. It is time for a weekend get away . . . soon.

I will be going to the hospital where I had my first breast MRI almost three years ago now. It was the day that I found out that the cancer in my right breast had unfortunately spread to my lymph nodes and was invasive. It was a tough day. It was the kind of day that so many women (and men) have experienced and continue to experience.

My Aunt Ann died of breast cancer in 1994. And, to this day, there is still no cure and very little change in the survival rates. Some make it, some don’t. Some get it some don’t. Some get it a second and third time, some don’t. Not a lot has changed. And anyone who has read my blog, knows all about how I feel about Susan G. Komen’s “Race” (sic) “for the cure” (sic).

Still, Herceptin became available since my Aunt’s passing. I am lucky. I am still here because of the availability of that drug.

And when I think back to almost three years ago, going in for my first breast MRI (back when I had breasts, breasts that were apparently trying to kill me) I already knew that I had breast cancer. I already knew that I had “the bad kind”. I already knew that despite the fact that I felt no lump, and that my doctor’s felt no lump, the cancer consumed most of my right breast. How could that be?

I had dense breast tissue. And, I had a fast growing, aggressive form of breast cancer. On the initial mammogram that detected it, it was like a spider web like appearance, something that was ultimately called “multi-focal” breast cancer (meaning multiple locations and diffuse). From my understanding of it, that is part of why I did not feel anything and why my doctors did not feel anything abnormal.

That is something that still floors me . . . that I never felt a lump, that my doctor’s never felt a lump.

Women need to know whether they have what is called “dense breast tissue”. We need to know this because it a) increases a women’s risk of getting breast cancer and b) it makes detection harder . . . which can mean a later diagnosis.

I also want women to know that there are other signs of breast cancer than simply feeling a lump. I had breast cancer for some time before it was detected. We know this because, looking back, there were symptoms.

What I did feel was exhaustion. I was tired. My body was, after all waging a war, fighting. I also had night sweats. And when I say night sweats, I mean waking up completely soaked, drenched kind of night sweats.

I brought these concerns to my primary care physician and he told me that I was probably going into early menopause. I didn’t really trust this, in my gut, I thought it had to be something else. Still, not in my wildest dreams did I think it was breast cancer. But, about six months later, in a mammogram, I found out the real reason why I was so tired and having night sweats.

I say this here because I want everyone to know what my primary care physician did not know: that night sweats and exhaustion can be signs of breast cancer. My doctor dismissed these symptoms as being attributable to “hormonal changes”. I had Estrogen and Progesterone responsive breast cancer. So there definitely was something hormonal going on. But, my doctor never looked into any other possibility. My oncologist tells me that these were very common signs of estrogen responsive breast cancer.

We trust our doctors, or at least we want to. I knew in my gut that my doctor’s explanation of my night sweats and being tired was wrong. In fact, he told me to take supplements that would have actually increased the estrogen in my body (thinking that my symptoms were from a drop in estrogen). I would imagine a simple blood test could detect hormone levels . . . at least I would think. But, none of that was done. I didn’t take those supplements (fortunately – because increasing estrogen levels would only have fed the cancer I already had at that time). But, I also did not trust my gut enough to seek out another doctor. And I didn’t know I had dense breast tissue, and I didn’t know that night sweats could be a sign of breast cancer. And, unfortunately, my doctor did not know either. (By the way, I have a new primary care physician).

I have spoken to so many women lately who have either put off having a mammogram (have never had one yet and they are years past 40) or that they just haven’t had one in a few years. And, in further talking with these women, not a single one knew whether they had dense breast tissue.

There is legislation being contemplated to make it a requirement that patients are informed as to whether they have dense breast tissue. This would go a long way to better detection, earlier detection and hopefully prevention (if a person knew that they had dense breast tissue, then perhaps extra precautions could be taken to help prevent breast cancer. And, it would be a basis for patients getting better imaging – a breast MRI, for example, rather than relying on a mammogram that may not detect cancer in a patient with dense breast tissue until it has spread farther, become bigger, become more visible).

So, get a mammogram and when you do, ask the radiologist whether you have dense breast tissue or not. And be aware of your body, trust your instincts and if you think your doctor’s explanation of something is not right, then go see another doctor.

Well, it is now already tomorrow (this post has taken me into the next day). So I am hours from spending a chunk of my day back where all of this started. Hopefully all news will be good.

I appreciate your prayers and/or positive thoughts coming my way.

Love and peace,

Lisa

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When Pigs Fly: More Thoughts on Komen . . .

24 Jan

This year I could not have been more grateful for the month of October (aka: Pinktober) to end. Next year, my plan for getting through Pinktober (and SGK’s pink peddling and pushing) is to simply do all of my grocery shopping online and at local farmer’s markets. I want to limit my exposure to the sea of pink. And, I don’t want to be asked again at a grocery store checkout stand if I want to donate to Susan G. Komen “Race for the Cure” [sic] (And by the way, I mean “SIC” as a double entendre).

Just one of the many pink products sold all year long: a Komen Pig Note Pad. But, take a closer look below . . .

When you’ve had breast cancer you have a whole different insight into the world of pink ribbons, pink products, 5ks and three day walks and so on that are all supposed to raise money for a cure and to help women (and men) with breast cancer. I used to think that SGK was using their money to benefit women with breast cancer and to help find a cure. But, I learned quickly, the hard way, that SGK will not be there for you if you need their help. See my earlier post on how SGK abandons breast cancer patients and leaves us in the cold. (I personally called SGK’s advertised phone number that breast cancer patients are invited to call for financial help over 100 times) and not once did I ever reach a live person, not even a voice mail where I could leave a message – in my opinion – what they did – what they did NOT do – while claiming that they would do something – was fraud).

I know many people who love the pink ribbons and love the Susan G. Komen Foundation and their pink rose ceremonies and pink balloons and 5k walks and  – sadly – they think that buying pink will help eliminate breast cancer . . . one day. They think that buying pink will somehow help someone like me.

So why am I talking about this in January now? I was out picking up some office supplies at my local Staples store and did a double take when I saw all of the Christmas displays and seasonal products for the holidays replaced with pink, pink, pink. Seriously? Is it necessary for this to be a 12 month thing now?

I decided to take a stroll throughout the store and take in all of the pink, just curious about whose name is on it and where this pink-breast-cancer-curing-money is really going. Nearly every product I saw at Staples that was pinked was done so in the name of the Susan G. Komen Foundation. Not much of a surprise really.

Maybe when pigs fly we'll have a cure . . . until then, by all means, let's keep "benefitting" SGK!

But, here is what really surprised me . . . they don’t even claim any more to be giving the money to “the cure”. Instead this is what the Susan G. Komen pinked products I found now say: “benefitting” The Susan G. Komen Foundation . . . at least they are being honest about it now . . . where the money from your purchase goes . . . “to benefit The Susan G. Komen Foudation”.

It certainly did not go to benefit me or anyone I know who has had, survived or died of breast cancer. I love this complete lack of accountability (not). I guess it is just par for the course. The sad thing is that people buy this stuff thinking, believing that it will actually lead to a cure . . . yeah, maybe when pigs fly . . .

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Santa Monica . . .

19 Dec

Hello all,

I want to thank everyone for their support, kind words, messages, prayers, positive vibes and love.

I saw my oncologist today. It was a quick appointment. I had hoped that I could see the nurse so that I would get more of a physical exam done (the nurse does a more extensive physical exam and I was hoping she would do that and give me some reason to allay my fears a bit, as in, well, I don’t feel anything suspicious). But, I knew that my oncologist would order a breast MRI. It is the only way to tell if there is something going on there. So, my appointment pretty much went as expected.

Menopause Three

Seriously? "Menopause, the Musical"??? (Image by David Jackmanson via Flickr)

I was also chastised for not petitioning my insurance company’s denial of the genetic testing (to determine if I have the Braca gene or not). I will get on that tomorrow. It is so stupid that my insurance company denied it when both my oncologist and the genetic counselor requested it. There is no basis really for my insurance company to deny it. But, they did. Anyway, it is nothing new, battling with insurance companies. But, it is something I decided to take a break from doing (since at one time it was pretty much a full time job – back during chemo – it was a constant battle to get meds approved – the same meds each chemo round would get denied . . . as if I was no longer in need of the medication . . . very odd). I would love to some day make a change in that, I don’t know how someone who is elderly or sicker than I was copes with all of that during treatment. But, I digress.

I need to get off my butt and file the petition and make my insurance company do what they are getting paid handsomely to do.

The other concern my oncologist has is that I am still ovulating (or at least that is what she thinks given I still have pretty regular menstrual cycles despite all the chemo, despite taking Tamoxifen) . . . I know, aren’t you all thrilled to hear that?!! TMI, right?!!

The point is that I am still pre-menopausal, still producing estrogen (the hormone that the cancer I had loves) so that is a concern. Tamoxifen often causes menstrual cycles to stop (as does chemotherapy). When a woman goes into menopause from chemotherapy it is called “chemical menopause”. Some women never come out of that chemical menopause. I had that during chemo. But, as soon as I finished chemo, my ovaries kicked right back in. At the time I thought that was a good thing, thought it was a sign of my body being resilient. And now that I have been on Tamoxifen, but, am still having menstrual cycles well, it is not something my oncologist is very happy about I guess.

I am not really certain about that actually. Except that she keeps asking me “are your ovaries still kicking?” (which kind of bothers me a little bit, sort of, okay, maybe I am being ultra sensitive . . . I LOVE my oncologist, she is so great and I owe her so much, I really believe that I owe her my life. BUT, this whole, why-aren’t-I-in-menopause-yet thing is really getting kind of annoying.

Her concern is well placed . . . the more estrogen the worse my chances of a recurrence since the cancer I had was fueled by estrogen (and by HER2 gene expression – if I am even saying that right, don’t know that I am, so don’t hold me to it, I am too tired to look it up). Premenopausal women with estrogen responsive breast cancers do not get as much of a benefit from Tamoxifen (Tamoxifen is more successful in post-menopausal women as are the alternatives – aromatase inhibitors). Still, Tamoxifen is shown to help reduce the risk of recurrence in pre-menopausal women too, it just isn’t quite as effective.

Anyway, I am rambling. I’m thinking I should wrap this up.

Okay, so the upshot of my appointment was exactly what I expected: get an MRI. Hopefully it will show that everything is fine. The pain I am having can be due to surgeries and the redness can be from the radiation I had to that area (skin changes can occur for many years to the areas that have been radiated). Anyway, that is the latest.

It is unlikely that I will be able to get the MRI before the end of the year . . . which is just fine with me.

So, now it is back to planning Christmas dinner . . . going to repeat the Tapas Christmas dinner I did last year (although different dishes).

No turkey here . . . unless I decide to go for turkey empanadas . . .

I am so over cooking Turkeys, Hams or Crown Roasts . . . don’t think I will ever do that again. We had so much fun last year doing the Tapas dinner that we decided it should be a new Christmas family tradition. So there we are. I plan on thoroughly enjoying the holiday and putting all of this cancer crap out of my mind.

This morning I visited a friend of mine who had breast cancer surgery today. This is her second time through breast cancer and it will hopefully be her last. She is strong and beautiful and courageous and I am grateful to know her.

I don't know anyone who can rock a surgical hat like this woman 🙂

I will go see her tomorrow (her surgery was today). I am hoping and praying that the pathology report is good. Some women have what is called a “complete response” to Herceptin and chemo treatments prior to their surgery (meaning that when they get to surgery there is no more active cancer left). I am hoping and praying that she gets good news.

Please keep me and my friends (who are still waiting on results) and my friend who is currently having surgery for breast cancer in your prayers. This cancer stuff seems like an epidemic some times.

Well, all is well for now. I am sitting in a cafe in Santa Monica waiting for the traffic to improve before I make my way back home. I have to say the people watching here is great!

Third Street Promenade . . . one of the things I enjoy about my oncology appointments . . .

Thank you for your continued prayers and support.

I wish you all a wonderful holiday, peace and health!

Love,

Lisa

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Cancer’s Grip . . .

17 Dec

I want to preface this post with this: I am grateful everyday that I am still here.

English: A busy day on Third Street Promenade ...

My oncologist's office is near here . . . Third Street Promenade in Santa Monica. I always stop here at a favorite lunch spot . . . try to turn oncology appointments into a fun outing . . . 🙂

And now . . . something I don’t like to talk about . . . that fact that I experience pain everyday. Ever since chemo and radiation and all of the surgeries it has become what is normal. So now, it is just simply a matter of degree . . . it is either a bad day or a not so bad day or one of those days where you are so distracted by something beautiful or wonderful or fun that you forget your pain. That is what “post cancer” is like for me. At least right now. I have great hopes that I will be better with each passing day, week, month. And really, so much suggests that will happen. But, it is progress that feels very slow. I don’t know if I will be pain free one day, but, I hope that is possible.

But, until then, there are many things that help.

Laughter makes me forget the pain. It is truly good medicine.

Breakfast with a good friend makes me forget (thank you for that today, my friend).

Playing music and singing makes me fo

rget.

But, tonight I am worried. Tonight I am experiencing another type of pain from cancer: it is called FEAR.

A few weeks back a family member had a cancer “scare”. It was skin cancer, but, thank God, not the “bad” kind. And so a little surgery, a little reconstruction and a few weeks later he is all healed up and no one would be the wiser.

But, now this week, another person very dear to me was diagnosed with skin cancer. We don’t know yet whether it is the “good” kind or the “bad” kind. And, so we wait.

And just today I found out that someone else very dear to me, is waiting on test results for what might be cancer or might (hopefully) be something else.

I fear cancer more now than I ever did. I know what chemo is like, what radiation is like, what being made sick in the hopes of one day being made well, is like. And I know what life is like after cancer. And so when I think of someone very dear to me having to possibly go through that . . . I can not bear it. I am not saying that I wouldn’t be worried about it if I had not been through treatment myself. But, knowing what cancer can visit on a person makes it a whole different worry . . . to actually think that someone I care about might have to endure all of that is painful, frightening.

And, then there is my own fear for my own self. The fear I feel guilty for having . . . the fear of a recurrence. It is something that comes and goes . . . some days it is on my mind and some days it is not. I feel guilty for having that fear because I know so many people who have had a recurrence, who have terminal cancer, who will never end their treatment because treatment is what keeps them alive.

So my fears seem pretty petty when I look at it from that lens. But, these are real fears to me and yes, I feel guilty for feeling that way . . . almost like I feel sorry for myself. I hate that. I don’t like feeling sorry for myself. But, fearing a recurrence seems somehow akin to self pity, feeling sorry for myself, feeling like a victim . . . and that, to me, feels wrong. And, it definitely feels like a waste of time. But, sometimes it is just there, that fear, and there is little that I can do on those days to get rid of it.

Monday I see my oncologist because there is something on my right breast that does not seem normal. Some red spots. Maybe it is a rash. There is also a new pain in my right breast. Which, if you think about it, seems really odd since I don’t have breasts any more so why would I feel pain inside, where my breasts used to be . . . both were removed and replaced with implants . . . and as far as I know, implants don’t feel pain. So I don’t get it, don’t understand why I would have pain there where there is nothing that belongs to my body in that place. But, it hurts. And there are some red spots. Hence Monday’s appointment. (Oh, and just as an explanation for those of you reading this who have had breast reconstructive surgeries . . . I am used to the pain at the scar sites, but, this is different. Maybe this new pain is even normal. Who knows).

Maybe it is just a rash and maybe the pain is from something I did physically different this past week. I don’t know. But, my oncologist, who is going out of town for ten days, wants to see me before she leaves. She told me to either come in today or on Monday. I am angry and I am afraid. On the one hand, I am grateful that she is so accommodating and that she is able to see me before she goes on vacation.

On the other hand, I am alarmed that it can’t wait ten days. Or, why can’t it wait until my next scheduled appointment in February? Nope. I see her Monday.

A friend of mine has offered to drive me to Santa Monica on Monday (my oncologist is in Santa Monica). At the time she offered to drive me, I almost turned her down as it really didn’t seem necessary. But, now, as Monday looms and I have had a chance for my oncologist’s apparent urgency to see me to sink in, I believe that by Monday I may very well be a basket case. So, I am taking her up on her offer of a ride. And, we will make it fun. Santa Monica is a nice place to visit. We have a few favorite spots to eat, to window shop etc. There are some good distractions at the Third Street Promenade.

A rash. What a bunch of nonsense this whole cancer fiasco is . . . that some pain and a rash cause such a degree of alarm. God, I hope it is a rash.

That is what I hate the most about cancer . . . the fact that what might just be a rash stirs up all of THIS. A rash. Pray that is a rash, will you?

And pray that my friends waiting for results both get good news too.

Damn, fucking cancer. Fucking cancer.

I know, not the best language. But, sometimes that is the only word that works.

Thank you for your prayers and positive vibes.

Love and peace,

Lisa

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Birthdays . . .

30 Nov

Yesterday was my birthday. I had lots of things swirling through my head yesterday. Birthdays are kind of weird for me now. Mostly I am just grateful to have had yet another birthday and extremely grateful to have one that is cancerfree.

This same time in 2008 I was sick, but, didn’t know it yet. Well, that isn’t quite true. I knew something was wrong. I just didn’t know that it was cancer. I was tired all of the time. My body ached. I had intense night sweats. I was told by my doctor that these symptoms probably meant that I was going into early menopause. It never occurred to me or to my doctor that it was in fact breast cancer. But, a few months later I would have a mammogram come back with something suspicious and then everything suddenly made sense – I instantly knew why I was so incredibly tired all of the time.

Marahon shoes

Fast forward through a couple of years (wish I could have . . . ha, ha, ha) of cancer treatment and multiple surgeries (months of chemo, followed by a bi-lateral mastectomy, followed by multiple hospitalizations for post-surgery infections, 6 weeks of radiation, a year of Herceptin infusions, months of daily nurse visits to administer IV antibiotics for the post surgery infections, two reconstructive surgeries – still one more of those to go – lots of trips to the ER and probably a few other things I can’t remember) and here I am . . . on the other side of it all. Or so it seems.

So, this is a birthday that I did not know if I would have. Of course we never know what tomorrow will bring. But, having clawed away through most of that first year post diagnosis to be here, it is really quite something to still be here.

Last year on my birthday I was recovering from surgery. The preceding birthday I was going through radiation treatment (had finished chemo and made it through the first surgery a few months earlier) but, still had two more surgeries and half a year of Herceptin infusions ahead. When I look back on the last two birthdays it is amazing to me that I am as well now as I am.

I don’t know how many more I will have, no one knows how many birthdays they will have. But, it is really something to be here in this way today. Last year was tough, the year before was kind of almost not really bearable. In fact, I remember wondering if I would have another Thanksgiving, another Christmas . . . you get my drift.

Since being diagnosed in 2009 I have met and become friends with many cancer patients. I have lost friends to the same disease that I have, at least for now, somehow managed to survive. It doesn’t make any sense. And, I am well aware of the fact that it could come back any day and simply strike me down. That is cancer: it comes, and it it always goes . . . it is just a matter of whether it takes you with it or not (and I mean that both literally and figuratively).

Last February I stood and watched a friend of mine cross the finish line of a half marathon. I remember how difficult it was for me (not even one year ago today) to simply stand there for 20 minutes waiting to see my friend cross the finish line. I was still so tired and weak. I remember hanging onto a chain link fence for support and wondering if I would make it through (kind of the way cancer treatment and recovery is like . . . hanging on and wondering if you will make it through). I promised myself last year that I would be crossing that same finish line myself some day.

So tomorrow I am buying a new pair of running shoes (compliments of my parents – their birthday present to me). I have ten weeks to get myself, and my new shoes, ready for a half marathon. I fully expect to walk a significant part (if not all) of this “run” but, I don’t care. I just want to get through the 13.1 miles and cross that finish line. Wish me luck 🙂

I am very thankful for this birthday. And, I am so incredibly thankful for my family and friends – without whom I would surely not be here in the way that I am.

Love and peace,

Lisa

 

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Dear Susan G. Komen . . .

27 Sep

Breast Cancer Action has written a letter to Susan G. Komen requesting that SGK agree not to “pinkwash” and to recall their “Promise Me” perfume. Here, they ask you to join them I did. I hope you will too.

Here is what all the stink is about.

Susan G. Komen launched their “Promise Me” perfume (which shares the same name as Nancy Brinker’s latest book . . . talk about branding) in the name of breast cancer. “Promise Me” perfume sells for $59.00 with less than two dollars of the sale price going to breast cancer research.

Not So Sweet Smelling After All

But, here is where it really gets smelly:

After conducting an independent laboratory study, it was determined that “this perfume contains chemicals that are a) categorized as toxic and hazardous, b) have not been adequately evaluated for human safety, and c) have demonstrated negative health effects.“ Source: Breast Cancer Action.

Here are the chemicals that are of most concern that are contained in Komen’s “Promise Me” perfume:

  • Galaxolide, a synthetic musk that works as a hormone disruptor and is detected in blood, breast milk, and even newborns.*
  • Toluene, a potent neurotoxicant known widely as one of the toxic trio, has demonstrated a variety of negative health effects and is banned by the International Fragrance Association (IFRA).*

*Source: Breast Cancer Action

Breast Cancer Action coined the term “Pink Washing” to describe the pinkification of products that are actually known to increase the risk of breast cancer or are thought to be linked to an increase in breast cancer. Now it seems that Komen has produced their own pinkwashed product: their “Promise Me” perfume.

I have long thought that pink bottles of Mike’s Hard Lemonade and other alcoholic beverages that go pink for a cure to be hypocritcal at best. Alcohol consumption is known to increase a woman’s risk of breast cancer. But, when ever I have complained about these pink bottles, many take issue with why I would care where the money comes from . . . after all, isn’t it just a good thing to raise money for breast cancer research?

But, do people know how few of their dollars spent on these pinked products actually go to research? Probably not. And, you would think that a product commissioned by Komen would actually serve up more money “for the cure” . . . but, out of the $59.00 purchase price for “Promise Me” less than two dollars goes to research. (For more on where the money DOESN’T go see Cancer Culture Chronicles: “Komen By The Numbers: 2010 And Still No Answers” and Uneasy Pink’s: “Quick Math” and for some more of my own snarkiness: “Pinktober Comes Early”

Breast cancer action is taking Komen on. They have asked Komen to join them in a promise not to engage in pinkwashing and to recall their “Promise Me” perfume.

“We are genuinely shocked to see a breast cancer organization marketing a product containing multiple chemicals categorized as toxic or hazardous” (Breast Cancer Action)

I hope you will join Breast Cancer Action, go to their link and you can use their letter, in asking SGK to do better, to honor their promise. It only takes a moment to do.

Here is my letter . . .

Dear SGK:

I am disgusted with what I believe began with the best of intentions and has now become a giant pink money maker. I am NOT alone in my feelings. There is a movement, a group of women who are educated, strong and angry. We know you hear our voices, but, you have yet to respond. We are waiting, we will not let up.

We feel as though you are profiting over breast cancer. We feel that you really are not racing, or even slowly walking, towards a cure. I went to your OC race this past weekend and I saw the same thing that I have been inundated with ever since my diagnosis – you sell this idea that you are raising money to “CURE” breast cancer and yet you preach early detection as the solution instead. You have even trademarked the words so that no one else can use it and then waste valuable time and resources to sue anyone who uses your “for the cure” language. This makes it seem like you are more concerned about protecting profit motives than actually racing after a cure.

The reality is that even with early detection, women (and men) DIE of breast cancer. You wrap up poster women – take credit for their survival – all in a pink bow and sell this idea that it will all be okay if we just get screened early. Early detection is NOT a cure. Wake up. We have and we are NOT going away.

Facebook is credited to helping Egyptians take to the streets and to revolt.

There is an online movement, a revolution of sorts. I am one of many who are spreading the word. We are all already aware of breast cancer. The NEW AWARENESS that we need is how little money goes to actual research. (I hear that only 19% of the $389 million dollars that Komen raised in 2010 went to research). 19% is NOT enough!

Stop pinkwashing. Promise me this: stop knowingly contributing to the proliferation of products that not only increase the risk of breast cancer, but, also increase the risk of all cancers. We know you can do better. I, personally, will not rest until you do.

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