Tag Archives: cancer

Pinktober: One Week Down, Three To Go.

6 Oct

It has been a crazy several months (more on that in another post) and I have wanted to write here on many occasions. But, each time, words seemed to fail me. I’ve really wondered what I could possibly add to the conversation about breast cancer or survivorship given that there are so many amazing voices out there doing it every day. And every time I think I am going to write, I don’t even know where to start. I feel like I have said pretty much what I want to say and don’t really want to become a broken record. Nothing is really new, right?

And, I guess that is the problem: nothing is really new.

We still have pink washing, breast cancer awareness month and very little of the money raised in the name of a cure going to actual research and . . . 

still, 30% of ALL women who are diagnosed with breast cancer will become metastatic – as in having an incurable disease, as in they will die from breast cancer.

Cancer sucks. Period.

One week down, three to go. For all of what I love about October (baseball playoffs – especially if my Angels are in it, my empty, beautiful beach, sunsets over Catalina and Halloween) I also dread October. It is pinkified and Komenified for the entire month. Hate that. There is pink everything, everywhere. Turn on the your t.v. and you’ll see it in commercials, the back drop of newscasts, the NFL, you name it, everyone and everything is pink.

Not going to drink this . . .

How is drinking pink alcohol fighting against breast cancer?

There is ridiculous pink branding and pink washing everywhere (Mike’s hard lemonade usually goes pink along with Campbell’s Soup, and so, so many other companies).  Walk into any grocery store, it is as prominent as Halloween, Thanksgiving and Christmas . . . it is like Nancy Brinker started her own damn pink holiday and it lasts a full month long. I realize it is not all Komen, but it seems to be mostly them and if you have read my blog much, well then you know how I feel about Komen. I will never believe that an organization that collected 389 million dollars in the name of a cure (in 2010), but only put 14% of that 389 million towards research, could ever become an organization that I could support or trust. For more on that see: “Komen By The Numbers: 2010 And Still No Answers” and how Komen participated in pinkwashing by pedaling their own pink product, here.

Here is just one of many examples of something that is pink-washed – Essie’s “Breast Cancer Awareness” nail polish – by the way, nail polish usually contains toluene, formaldehyde and dibutyl phthalate (aka: dpa) – all known carcinogens – but who wants to be aware of that . . .

And how about these clever names for breast-cancer-awareness, possibly-cancer-causing-nail-polish: “Pink Happy” and “Pinking About You” and my absolute least favorite: “I Pink I Can” . . . really??!!!

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In fairness to Essie – since they do not disclose a complete list of their ingredients online –  I can’t be sure if they use the “toxic three” in their nail polish. But, most nail polish sold in the United States contains all three.  And all three are known carcinogens. But, let’s not go too crazy with all this awareness . . .

The one ingredient Essie does list online is: “dimethicone” which is a “smoothing silicone” substance that can accumulate in the liver and lymph nodes and appears to be linked to the “growth of tumors” (“Cancer Alert: Skin Care Ingredients to Avoid”, by Dr. Edward Group). Sounds awesome, doesn’t it?

That, my friends, is pink washing – selling a product that is known to contain chemicals that cause or contribute to breast cancer in the name of breast cancer awareness.

One of the things I dislike the most is that for all of this “awareness” and supposed racing for the cure, we are not closer to a cure. 40,000 women will die of metastatic breast cancer this year. Not a good statistic at all. I have lost many friends, including my aunt, to breast cancer. I will see more friends die. I might die of it too

We need research. We need to learn what causes breast cancer. We need to educate. We need more RESEARCH. We really don’t need: pink portapotties, pink golf carts or Mike’s Hard “pink” Lemonade or make-me-aware-pink-potentially-cancer-causing-nail-polish with cute (sic) names. We don’t need more awareness.

I dislike the pink onslaught and pink hoopla because it celebrates something that truly is not happening. We aren’t curing breast cancer with pink balloons and pink products. This “awareness” isn’t getting us anywhere.  Sometimes I wonder if we are even treading water. My friends, your friends, are still getting diagnosed, still going through chemo, still dying, period. It is just so damn tiring. Why don’t we just all admit it – this cure thing is a fiction at this point. We are no closer to a cure now than we were when my Aunt died of metastatic  breast cancer in 1994. But, one thing is for sure – the pink profiteers are profiting big time – all in the name of breast cancer awareness.

For me, my personal breast cancer awareness is about the daily physical and emotional ramifications I still deal with nearly six years out. For me, breast cancer awareness is about my friends who have died, who will die and who will be diagnosed. For me breast cancer awareness is about how difficult it still is sometimes to simply live my life. For me breast cancer awareness is the guilt I feel in saying that very thing – that it is “difficult” being a “survivor.” After all, don’t I realize how lucky I am to be alive six years out? Of course I do. But, knowing how amazingly lucky I am does not mean that I don’t also feel like crap some or even a lot of the time. Pain and lymphedema are frequent visitors post cancer treatment.

On the upside, I’ve learned to shrug off pains now without too much thought of it being a recurrence. That is some real progress. But, I continue to see my friends get diagnosed. Many friends have had recurrences. And so for me, not thinking about a recurrence is something I have to actively work at, especially when I am seemingly surrounded by all of this pink crap during October.

So for the rest of this month of breast cancer awareness I am going to try to be less aware of the pink and try to see the orange and black halloween decorations and the fall colors displayed in the grocery stores (let’s face it, living in Southern California, that is about as close as I get to seeing “fall colors”) and try not to see too much of the sea of pink. And, I will try not to retort back with something snarky to the well meaning grocery store clerks when they ask me if I want to “donate to breast cancer” (whatever the %@&# that means). I have always been tempted to respond with something like this: “No thank you, I’ve already donated my breasts to breast cancer. I think that is enough” . . .

Sigh.

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Goodbye my friend

10 Apr

I don’t know what to say. I lost a dear, sweet friend today. We grew up together. In fact I don’t remember a day of my life that I did not know her . . . when I was little we were at each other’s houses every day. As adults we remained friends. Last year my Dad played the piano at her birthday party – it was a great party. I am so glad that we all gathered that day, so many people came.

She survived brain cancer as a child. I remember when she went through treatment when we were just kids. She lived cancer free for decades and then it came back this past January. This time there was no treatment for her, only hospice.

She was an amazing person and a true friend. So kind, so generous, such a huge heart. Biggest heart I have ever known. My love goes out to her parents, to her two brothers, to her niece and nephews and to her husband and to everyone who had the privilege to know her.

Rest in peace sweet Sheila. I love you.

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Bill Keller’s Cowardly Measures

14 Jan

First of all, I am still speechless after reading Bill Keller’s NYT op-ed. There are so many things with which to take issue I don’t know where to begin. There is the fact that he (and his wife) decided to attack personally a woman for whom so many of us have intense and great admiration for – Lisa Boncheck Adams. And there are all of the completely ignorant statements that he makes about cancer, about being a patient, about so much. I only know what I know about cancer from my own personal experience and that of my friends and family who have had to endure the disease. And, I have experienced the loss of those who have not outlived cancer. I won’t say not survived it, and I won’t say they “lost their battle” . . . I hate that language in the cancer world. But, to each their own.

So, while I do not know where to begin, or how I could possibly ever address every point of Bill Keller’s op-ed that I find to be abhorrent, mind-blowingly ignorant, simply incorrect, wrong, factually not supported ANYWHERE, arrogant mischaracterizations of woman who has been incredibly transparent (so why can’t you – BILL – even read her blog correctly – clearly you haven’t – your words make that obvious), mind boggling, blood boiling – I will say this, because I HAVE to say something:

Bill apparently thinks we are all supposed to die in accordance with Bill’s approved, go quietly into the night, disappear, don’t educate, don’t have feelings, don’t be yourself, don’t do what is important to you, plan. Whatever Bill. I love the internet because when someone is as undeniably stupid as Bill Keller (and his wife – they SO deserve each other), it becomes a storm. And he thought the weather on the East Coast was bad…

I am so proud of my online friends who have taken him on. I know they share my anger and disbelief at what the Keller’s have done. But, they are able to do something I can’t right now – and that is to WRITE and write ELOQUENTLY and THOUGHTFULLY and PROFOUNDLY about all of what is wrong with what the Keller’s have done. I am still at the childish, angry, name calling stage . . . perhaps next week . . . after I recover from tomorrow’s fifth cancer related surgery (don’t worry – this one is for reconstruction purposes – hoping for good results, but just grateful that this will most likely be the last surgery in the series).

Much love and peace (and yes, disgust),

Lisa

P.S. I appreciate any prayers, positive vibes you can send my way – hoping for a good surgery, good result and quick recovery – got lots to do!

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Reflections . . .

27 Dec

This was my third, cancer-free Christmas. Cancer free. That is something.

Every day is something new and amazing really, if I want it to be. And I guess that is the reason I am writing today. There are some things that I have lost to cancer (besides the obvious, which would be my breasts and my peace of mind). One of the losses, which is not necessarily a bad thing, is my patience for all things petty. I don’t know that I ever had tremendous patience for petty things. But, now, post cancer – post the days that were continually hijacked by pain, exhaustion, chemo, radiation and surgeries – I simply have lost my patience for, well . . . stupid, petty things. I have a very hard time with losing time or having wasted time.

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This is where I spent Christmas morning, watching and listening to the ocean and enjoying a beautiful, sunny morning. So grateful for those moments on the beach alone and so grateful to have my family come and join me on Christmas day 🙂

An example would be time spent arguing (especially arguing over something stupid). I marvel at how upset people can become over getting cut off on the freeway, or not having something go their way, or simply having to do something that they were not planning on having to do. My goodness. This past week has been such an eye opener for me.  I am so grateful for so many things, and I guess, I just can’t sweat the small stuff . . . it is amazing to me at what can throw someone’s day off, or make it “miserable” or bad. I know that it is all relative. But, really, if you have your health, you have SO much, so much.

I never thought that I took my life, my friends, my family, music, or a beautiful day for granted prior to cancer. And, I did not need cancer to see or to appreciate the beauty and love of my friends, family or nature. That being said, my wish is for another cancer free year (for all of us) and that we all slow down a bit, take life a little less seriously (which really means taking life seriously I think – as in enjoying life, not getting upset over minor things and recognizing that some things are truly minor).

I have made it a point to take more time out for the things that I enjoy. They do say that you should do what you love. I wonder if I had done more of that if I would have ever been sick. Who knows. I am not one to blame the cancer patient for getting cancer. But, I do know that I could have chosen to have a bit less stress in my life in the years preceding my diagnosis. And, as someone who would like to think that I have even an ounce of control over my health outcome – the idea of stress reduction (and that I can actively do something about that) perhaps helping prevent a recurrence is appealing to me.

So, that is my ramble for today and a bit of a New Year’s resolution too (something that I actually started several months ago) and that is to seek joy, seek love, seek peace.

Wishing you all the same.

Much love and gratitude,

Lisa

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Confessions of a non-compliant patient

4 Sep

Ever notice that “compliant” and “complaint” are almost the same. Interesting. I am no longer compliant because I had too many complaints.

I stopped taking Tamoxifen a month and a half ago. Done. At least for now.

Tamoxifen Mylan 20mg 100 tbl

Tamoxifen Mylan 20mg 100 tbl (Photo credit: Haukeland universitetssjukehus)

And for the record, the lesion on my left breast that is currently being re-tested, appeared at the end of May while I was still diligently taking Tamoxifen. It was biopsied then and I was told that the results were benign. What I didn’t know until I saw my oncologist two weeks ago, is that unless the pathologist ran breast cancer markers on the biopsy, then we don’t really know if it is benign. In other words, the doc only ran it for skin cancer – apparently skin cancer and breast cancer have different signs/markers etc. I did not know this.

Back in the day – in the active treatment, chemo, radiation, Herceptin and surgery days – I reviewed every piece of paperwork, especially pathology reports and MRI and CT reports. I questioned every word and made sure I knew what it all meant. But, back in June when my doc told me that the biopsy came back benign, I didn’t even ask for a copy of the pathology report. I just went along my merry way, relieved and did not question a thing.

Fast forward to August19th and I am in my oncologist’s office for my six month check up (I graduated from every three month check ups, to every six month check ups this past year) and she is very concerned about this small “lesion” on my left breast. incidentally, it really is small and the word “lesion” makes it sound all serious – let’s hope it isn’t.

“I don’t like how that looks” . . . “let’s get the pathology report and then we’ll go from there” . . . blah, blah and

BLAH.

So the next day, my oncologist received the pathology report and the “go from there” was: “we need to order the block and run it for breast cancer markers” blah, blah, blah and

BLAH.

I now have seen the pathology report from June. It is not skin cancer. But, according to my oncologist, it could be breast cancer. WTF?!!!

So, the wait began. And, because I have always taken charge of my health care, I have an oncologist who is out of my regular network because that is who I wanted and I fought to have her. What that means right now is that the in network biopsy (the “block” which is simply the little bit of tissue they took for the biopsy back in June) has to be ordered and delivered to my out of network oncologist up at UCLA. UCLA’s pathologist then will run the ER, PR testing and a fish stain for HER2. That all takes time.

Today it has been two weeks of waiting. This is the post-cancer landscape that those of us lucky enough to reach N.E.D. (No Evidence of Disease) often experience. If it isn’t an actual biopsy or scan, then it is an ache or pain that now is interpreted as potentially a recurrence.

Hopefully it will be nothing, just a little red bump. Just a little red bump – that, because I still have some vanity left after all of the the cutting and scars – I will have removed by my dermatologist. That would be awesome!

In the meantime, I am living my life. And, quite frankly, having some of the best days of my life. Truly special days. Days that I have had completely and utterly on purpose. I don’t ever want to lose that aspect of things. This will be the subject of a separate post – with photos to prove it.

So back to my confession and being a non-compliant patient . . .

Like I said, I stopped Tamoxifen. I know, I have heard it all – I am throwing away this “50% reduction” in my risk of having a recurrence. Well, first of all, it isn’t actually a 50% reduction . . . not unless you are post menopausal, which I am not. It is more like a 40% reduction. And, I know that sounds great and all, but then there are the other risks  . . . like blood clots, aneurysms . . . oh, and let’s not forget: CANCER (uterine cancer that is). Tamoxifen increases the risk of uterine cancer. I have already had to have surgery to remove pre-cancerous growth there, which I am told that since I have had these growths that I am now at an even higher risk of uterine cancer. When I raised this with my primary care doctor (about my being concerned about the increased risk of uterine cancer) he said that it would be far better to have uterine cancer than to have breast cancer recur. So, I stayed on the Tamoxifen and for some time I coped with the side effects. Oh yes, let’s talk about the side effects:

*Disclaimer: these are the side effects that I have experienced. I know some women who do not experience these side effects. And, I did not experience all of these side effects right away, some began a year into Tamoxifen.

PAIN. I woke up every day in pain, so much so that it took a couple of hours to work my way up to my day. Those around me didn’t necessarily know that I was in pain. But, the pain manifested itself in many more ways than just my feeling like shit. For example, I was habitually late (if it was a morning thing). Hate that.  But, surely, being late and seemingly unreliable, is better than risking being a non-compliant, Tamoxifen-taking patient.

FEAR. The pain also made me fearful that I was in fact having a recurrence. But, surely that constant fear is better than risking being a non-compliant, Tamoxifen-taking patient.

Often I could not exercise because of the pain. But clearly not being able to exercise regularly (and missing out on the health benefits – including reducing the risk of a cancer recurrence by exercise) is better than risking being a non-compliant, Tamoxifen-taking patient.

I gained weight. But clearly gaining weight (and thereby increasing my risk of a cancer recurrence) is better than risking being a non-compliant, Tamoxifen-taking patient.

I have lost bone density. But, clearly weakened bones is better than risking being a non-compliant, Tamoxifen-taking patient.

I woke in the middle of the night (on multiple occasions) with such excruciating pain that I could do nothing but scream, I could not stand up, I could not walk. But surely, occasional, pain disrupting my sleep is better than risking being a non-compliant, Tamoxifen-taking patient.

After two years of Tamoxifen I developed uterine cysts (which caused daily pain in my lower abdomen) and “the largest polyp” my gynecologist “has ever seen” and as a result, had to undergo surgery to remove the cysts and polyps. And of course there was the pathology to be done on those cysts (which fortunately all came back fine). So surely having surgery and losing over a week to recovery is better than risking being a non-compliant, Tamoxifen-taking patient.

There is a longer list that I won’t bore you or myself with . . . suffice to say that I have made this decision informed both from a research standpoint and a quality of life standpoint.

If the biopsy results come back and are not good. I will know that Tamoxifen did not prevent a recurrence for me. And, if the biopsy results are good news then I will be grateful (incredibly so) and I will still stay off of Tamoxifen, at least for now.

I have friends that are triple negative and wish that they were ER+ and thus candidates for Tamoxifen. And I feel tremendously for them. I would feel the same way if I were triple negative. But, for me, right now quality of life is weighing in favor of the side effects of Tamoxifen. Incidentally, I did not experience all of these side effects the first year being on Tamoxifen. The most offensive and debilitating side effects came after being on it a year. I did always have pain though, it just only got worse.

A note to oncologists: Here’s a heads up for oncologists out there. I am not alone in this choice to abandon Tamoxifen. Some of your patients are lying to you. Not just a few are lying to you, but many. They are lying to you because you tell us that Tamoxifen (or lupron and aromatase inhibitors, or removing our ovaries and aromatase inhibitors) are the ONLY way. Don’t get me wrong, I get it. I am not stupid. The research you have in front of you tells you that we must take it. And you care about us. But, there is a disconnect with many breast cancer patients and their doctors on this front. I know many women who have taken it religiously as told. But, I also know many who have refused to take it but won’t tell their oncologists the truth. This is a problem. There’s a whole lot of non-compliance going on and your patients are not always telling you the truth when it comes to Tamoxifen or AIs.

I want to add one more thing and that is about my Mom, my incredible Mom, who always knows exactly what to say. One of the reasons I took Tamoxifen in the first place and struggled through those first several months of constant dizziness and nausea was because I felt I owed it to my family to do the right thing. Suffer through it and be safer, reduce your risk. Still, it felt completely physically wrong for me to be taking it. But how could I risk being a non-compliant patient when I have people depending upon me. My Mom has seen my struggles first hand. I asked her how she felt about my stopping the Tamoxifen (honestly if she wanted me to go back on it, I probably would do it for her). This was her response: “I want you to make whatever decision you feel is best for you. That is the most important thing. I do not want to influence your decision because it must be yours and yours alone to make”

That’s my Mom. She is awesome.

Hoping for good results.

I appreciate your continued prayers, positive vibes and good juju.

Much love and peace,

Lisa

 

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Protected: Trivia that isn’t so trivial . . .

6 Aug

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Brinker Stinker: A Reminder of What Susan G. Komen is Not About . . .

5 May
Nancy Brinker

This is Nancy Brinker, clapping her hands, maybe she is applauding herself for a job well done (sic). Well I am one person who is not clapping my hands for you Nancy. (Photo credit: Wikipedia)

This blogging thing can sometimes feel like a burden. It seems that I never know how to begin or finish a post anymore. I want to write, probably need to write, and most definitely I feel a responsibility to write. Especially when it has been the kind of week this past week has been in the breast cancer community.

In the past week, two of my friends have had cancer return and a third friend, who has been living with metastatic breast cancer for some time, is now dealing with very severe health problems due to her treatment (to put it mildly, she is in a great deal of pain). This is part of the world of breast cancer. It is not the pink bowed version of things that the Susan G. Komen Foundation sells (mammograms and early detection equal a cure, etc.). Well, clearly mammograms and early detection do not equate to a cure.

And now, this just out: Nancy Brinker reportedly gave herself a 64% raise last year (see the Dallas News article here). She also claimed she was going to step down as CEO last year (amidst public outcry to do so).  And yet she has not stepped down – she is still listed as the CEO of SGK and – apparently right around the time she was reportedly going to step down as CEO – she instead gave herself a 64% raise – way to keep up with inflation, Nancy.

According to the Dallas Morning News: “The nonprofit’s latest 990 IRS filing shows that Brinker, founder and CEO, made $684,717 in fiscal 2012, a 64 percent jump from her $417,000 salary from April 2010 to March 2011.”

I wrote a letter in 2011 (that I also posted on my blog) asking the Susan G. Komen Foundation to leave me alone (I was tired of being hit up for money and tired of being misled). I think given the recent news of Nancy’s 64% raise that this earlier post is relevant. Here it is again: SGK: Please Leave Me Alone

I should note that since that post, Susan G. Komen’s “marketing” department contacted me via email on multiple occasions – apparently my blog post version of my letter to them got some traffic and so they felt the need to respond (even though my attempts to reach them over 100 times – yes, really…I called over 100 times – were ignored).

They never responded to my letter until the blog version of it started getting some traction and traffic (retweets and comments on a blog can get some attention and apparently it got SGK’s marketing department’s attention). While they finally responded, their response was not to deal with any of the real issues I raised, but instead to dissuade me from writing anything negative about them. In fact, the person who contacted me from Susan G. Komen told me that it was “her job to be ‘in the know’ about what was being said about Komen” . . . wow. She went on to tell me that it was essentially her job to deal with people like me.

It all seemed incredibly disingenuous to me. And, even a bit creepy. I felt a little like I was being stalked. And, truth be told (and I am ashamed to admit this) it did dissuade me from speaking out against SGK. I felt intimidated. I felt harassed. And, I just didn’t want to deal with any more direct contact from them. (Keep in mind, they sought me out and emailed me at my personal email associated with this blog – not an email I have ever given to them).

I have attended SGK’s race for the cure. The event is something that many breast cancer survivor’s enjoy. I can appreciate that. There is a “Survivor Ceremony” and many survivors, I am sure receive something positive from the event. My problem with it is that it feels like a huge fraud. I don’t just mean the fact that the money SGK brings in each year – all in the name of a “race for a cure” – is mostly spent on things other than researching a cure (in 2010 Komen put less than 19% of the 389 million dollars it raised in the name of a cure towards actual research) . . . it is also the phoniness of it all – the tunnel vision and the false portrayal that everything is fine, that we are doing enough about breast cancer, that women are surviving because of us (Komen) and aren’t we (Komen) great.

The fraud that I witnessed (in addition to what I outlined in my letter back in 2011) was the parading around of women who have had breast cancer and now speak as though it was some little blip in their lives – that now everything is perfect and all the while Komen seemingly takes credit for these survivor stories. It feels like a cover up. It stinks, no wreaks, of false promise and false hope. And, worse, it makes people complacent because they are lead to believe that Komen is really fighting for a cure when clearly the numbers do not add up to that.

It feels like Komen uses these women to further their spin that early detection will save lives; that mammograms will save lives. The truth is that some people get cancer and some people don’t. The truth is that some people get it and get better and some people don’t. The truth is that early detection or not, no one knows why some people’s cancer’s recur. Early detection is not a cure. But, Komen sells the idea that it is a cure – and all this really tells me (along with their failure to put even 20 percent of the millions they raise towards research) is that they have given up on searching for a cure . . . and certainly there is no “race for a cure” . . . not that I can see.

I really want to believe that Brinker started the Susan G. Komen Foundation with the real goal of ending breast cancer. But, the constant spin about early detection being essentially a cure is not only misleading, it means that SGK is content with the status quo. They are satisfied with things as they are . . . despite Nancy’s claims that she is not . . . actions speak far louder than words.

The reality is that if SGK wasn’t absolutely okay with things the way they are (okay with my friends dying, okay with not understanding why some women who are diagnosed with breast cancer survive and never have a recurrence while others – also diagnosed early – at some later point end up with metastatic breast cancer), then they would put real money towards research; they would actually race for a cure and they would fund research for the most underfunded area of breast cancer: metastatic breast cancer – the kind that kills.

I am tired of seeing my friends suffer, tired of losing friends to this disease, fearful of losing more friends to this disease . . . and I am also tired of being fearful of a recurrence. This is the side of breast cancer that Komen not only seems to ignore, but they seem to simply sweep right under the rug.

This little rant of mine is for Rachel Morro who died of metastatic breast cancer and for my friends currently dealing with metastatic breast cancer. Something has to be done. Just think, if even half of the the money that had been given to SGK in 2010 had been put towards research (instead of Rachel Morro of Cancer Culture Chronicles calculation of only 19% or Reuters calculation of only 14%) then nearly 200 million dollars could have gone to breast cancer research in just one year alone. Now that could really be something.

Komen raises millions of dollars each year in the name of a cure. In doing so, they are essentially siphoning funds away from breast cancer research. How can I say this? Well, apparently at least 80% of the nearly 400 million dollars Komen raised in 2010 went to something other than research. I highly doubt that donors expected 80 cents of every dollar they donated to go to something other than research for a cure. So, if that money had not gone to Komen, then it could have gone directly to actual research – it could have gone directly to what those making donations likely expected it to go to – to research for a cure. Research is what will lead to a cure – not mammograms, not awareness, not pink porta-potties and pink golf carts, not pink anything.

I am not against pink. I am just against the double talk and deception. You simply can not claim to be racing for a cure if you are spending less than 20% of the millions of dollars you take in – in the name of “ending breast cancer forever” – on research.

I expect to hear from SGK’s marketing department very soon . . .

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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

 

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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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More on Julie of Komen . . .

17 Mar

So, if you have been following my blog as of late, you will know I have – after three years – finally heard from someone from Komen. I posted Julie’s latest email two posts ago. I responded to her here on my blog. But, upon further thought decided I would respond, again, to her personally (even though I feel it is likely a complete waste of time). So, here is my reply to Julie (brace yourself, I am not happy about the fact that I STILL have not heard back from anyone in Komen’s financial assistance program – still only PR & marketing – which I feel speaks volumes):

Supporters of Planned Parenthood

For so many women PPH is the only place where they can get screening for cervical cancer and breast cancer. Thank you SGK for pulling the plug on PPH because you only encouraged others to help fill the void. Then after you were shamed into returning the funding to PPH - has both your funding back and the funding of those who sought to fill the void you intended to create by abandoning PPH. I am ecstatic that you pulled the plug on PPH as it has wakened the world to how SGK has truly lost its way.

Julie,

I posted a copy of your email on my blog and included a reply to you there. I believe that you believe in Komen. But, I think you fail to see that Komen has lost their way. The rest of the world has pretty much caught on to this fact. My personal experience is not unique. And, sadly, it is the tip of the iceberg.
 
In any case, as I said in my reply on my blog, your organization wears me out. In my opinion, Komen is nothing but smoke and mirrors and double talk. You told me in your first email to me that you “wished there was something that Komen could do to ‘rectify the situation’ now” . . .
 
And, you asked me to reach out to you if I needed help. So, again, in response to Komen’s invitation (this time, by you personally), I reached out and instead of any help, you simply reply with a defensive email – without any sensitivity to the fact that your organization failed me and has failed countless women in the same fashion.
 
You/Komen wear me out because you keep making promises and invitations for me (and scores of others) to ask for help and then when we do, your response is to ask me how you can help. Do you understand how frustrating and pointless this is to me and to the many, many other women who have contacted me telling me that their experience is the same?
 
Instead of defending yourself by saying that you were not at Komen in 2009, why not try to fix the problem. The phone number doesn’t work, no one has EVER contacted me from financial support, not EVER. All I get from Komen are constant requests for me to donate money to your organization and now, finally, after thousands of people have viewed my blog (a blog that does not cast your organization in a very positive light) YOU (someone from PR and marketing) respond to me. Your response is completely empty in my eyes. How dare you ask me how you can help me and then when I tell you how you can help me, you get defensive and do not respond to my request for help except to AGAIN ask how you can help me . . . this is so completely illogical and circular and crazy making. Stop wasting my time – I might not have much time left – don’t you people get that??? How dare you/your organization dangle help, mislead me and so many others into believing that it is worth our time to call and waste our energy on trying to reach someone for help through your organization. It is a complete joke.
 
And just as so many of us out in the blogosphere suspected, Komen has a whole staff of people whose job it is to “be in the know” about what is being said about your organization. PATHETIC. It is very clear to me that your organization is far more concerned about protecting its brand and money making machine than it is about a cure or helping breast cancer patients.
 
I do not understand why you are not getting this in front of someone who can fix the problem – that no one can reach anyone on your “financial assistance” phone number . .. why is that?
 
I am not going away (unless cancer takes me away) and I promise you that I will keep spreading the truth about your organization. I just hope that one day the truth will be that real money goes to a cure (instead of a paltry 14 to 19 percent), that your financial assistance phone number is one day answered by an actual person or at least a voice mail that allows a person to leave a message, that you will provide a contact form or email to breast cancer patients who are seeking (by your organization’s INVITATION) financial help, that your organization will start making funding decisions based upon women’s (and men’s) health instead of politics. (I understand that Komen pulled 12 million dollars in research funds last year to research facilities that had anything to do with stem cell research, is this true)??? That is what I heard. And then of course, there is the recent Planned Parenthood fiasco. 
 
Do you realize what cutting millions of dollars from research facilities that engage in stem cell research means? It means that top, leading research facilities do not get money from your organization – all around the world leading research organizations are involved in stem cell research – so your organization is cutting funding (as I understand it) from the very places that might be most likely to develop leading, cutting edge treatment and possibly a cure.
 
Your new tagline: “We Are the Cure” makes my stomach churn.
 
I will not let up. You have no idea how many of us are outraged that it took three years for your organization to contact me and that the person who finally contacted me only did so in response to the traffic my story received AND that this person was from PR/Marketing. You may have the best of intentions, but, I hope you can understand and appreciate why so many of us are disgusted by all of this.
 
I realize you are not responsible for Komen’s funding decisions or for the fact that no one ever answered one of my over 100 phone calls to the financial assistance line. But, you work there now. So, I hope my story (and the fact that it is absolutely not unique) will wake you up a bit to the realities of the machine you work for and maybe inspire you to work from within to make positive change.
 
I can only hope for this.
 
Until then, I will (along with scores of others) continue to write. So, I guess we are going to keep you pretty busy staying “in the know about what is being said about Komen”.
 
Best,
 
Lisa

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