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

11 Oct

This seemed worth repeating . . . so here goes . . . rehash of an old post, wish I could say that things have changed. Sadly, things have not changed. I am not against pink, I am simply agains the double talk and deception . . . and the complacency . . .

cancerfree2b

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…

View original post 1,381 more words

Thank you for visiting cancerland. We hope you enjoyed your stay.

5 Oct

Some Awareness: What I was not aware of until I went through breast cancer myself – how long it would take to recover (and would I ever really recover): the above post was written 20 months after I was diagnosed. I am re-posting it now because it reminds me of how long recovery took and that 20 months out I was still struggling and fighting. I am now 4 1/2 years out. Back then (November of 2010) I marveled at how far I had come and how far I felt I still needed to go . . . sometimes I still do the same to this day. It is a good thing. I am so very, very grateful today.

cancerfree2b

I haven’t written in a while. I keep starting a blog post, even get quite a distance into it, but, then I stop, save it as a draft and put my laptop away. When I return to it the next day I am no longer “there” anymore and so I start over, writing about something else. I have nearly posted something on a number of topics in the past couple of weeks. But, I just can’t seem to put myself behind it long enough to get it done.

Lately, I either write because I feel particularly down, displaced by this cancer nonsense, and use writing as a vehicle to somehow transport me back to a better spot or I write because I want to share something really good.

I think the past several weeks I have had so many highs and lows and have so quickly felt tossed back and…

View original post 573 more words

The Re-Branding of the Susan G. Komen Foundation

1 Oct

It was necessary – given the heat and fallout that SGK has deservedly experienced the past couple of years – that they re-brand themselves. And, they are definitely good at branding. But: “Passionately Pink for the Cure” . . . really? (Oh, and this has been trademarked – so don’t think you can use it for a fundraiser without getting sued).

I just discovered this re-branding this morning when I walked into my office building and saw this:

balloons pink komen

The lobby of my office building has gone pink

This wasn’t really a big surprise to me. But, then I saw all of these signs for: pasionatelypink.org and I thought, well who are they? Who is this new breast cancer non-profit? Hmmm . . .

And then I saw this:

passionately puke

Passionately Pink for the Cure is a new registered trademark of SGK – and their new brand. I guess they have finally conceded that they are not racing for anything.

SGK understandably needed a face lift after: a) doing some very stupid things like: pulling the plug on some women’s healthcare last year (you know, just the women who are poor, by choosing to no longer provide money to Planned Parenthood – where many women, in particular poor women, receive cancer screening),  and after b) being outed by many sources (including Reuters and our dear Rachel in 2010 in her widely seen post on “2010 Komen by the Numbers” – and for those of you who did not know, Rachel, among other things she was a cpa, so she did the math on SGK’s public financials) that less than 15% of the millions and millions of dollars SGK has raised in the name of a cure go towards research. Just to be clear, Rachel’s numbers for 2010 were 19%. When Rachel died of metastatic breast cancer in 2011, her post made the rounds again and Reuters did their own math and came up with 14%. Either way – not much.

In fairness, after tremendous public outcry, SGK returned the money to Planned Parenthood (essentially they were forced into doing the right thing).

And, then of course there was Nancy Brinker’s “Promise Me” Perfume fiasco. In case you didn’t know or don’t remember (but who could forget), Nancy Brinker launched a perfume called Promise Me (which is also the name of her book that was released about the same time). Of course the proceeds of this carcinogen containing perfume (yes, tests were run and the “Promise Me” perfume was found to contain chemicals banned in Europe for being known carcinogens) went towards breast cancer. About how much of it went to breast cancer research? About a $1.64 of the nearly $70.00 purchase price went towards a cure. The perfume was put on the shelves and sold. And, once it was brought to Nancy’s attention that her perfume contained harmful chemicals, she refused to take it off the shelves. 

Many of us began demanding that Nancy Brinker “step down”. She agreed to step down – but after agreeing to – she kinda well, really didn’t step down at first. And in fact, she decided to give herself a raise, upping her already enormous salary to $624,000.00 a year. There was fallout from this too (her giving herself a raise amidst demands she step down).

This past year some of the fallout received by SGK has resulted in some of their “Races for the Cure” events getting cancelled.

So it all makes sense that they would rebrand themselves – and it certainly makes sense that they would drop the “race for the cure” line from their brand because lets face it – this has been no race. Giving less than 20% of nearly 400 million dollars raised in just one year to breast cancer research is not a race. And, metastatic breast cancer – the kind that actually kills – has historically only received about 2%.

No, that is not a race. That is not even a slow walk.

So, I am one of many bloggers out there who have criticized SGK. I would like to think that our voices have been heard. They have certainly responded when we yelled loud enough. And, Nancy even referred to us a few years back as “grumblers”. Well, eventually, little by little some notice is being taken . . . I think. But, I am quite suspicious (given the numbers historically and given the fact that they pretty much seem to only do the right thing when they are forced to: when not doing the right thing puts their whole existence in jeopardy). So, yeah, I am suspicious.

Incidentally, their new domain: http://www.passionatelypink.org redirects right back to them. Nicely done!

I personally have had people from Susan G. Komen’s marketing department contact me to try to convince me that Komen is in fact a good organization – or really, I think they contacted me just to get me to shut up. (If you are interested in reading more about that, see this post: Komen, Please Leave Me Alone).

So, at least SGK is no longer claiming to be “racing for a cure”. Now they are just “passionately pink”. Who doesn’t love that?

Meanwhile, excuse me while I passionately puke . . .

Tags: , , , , , , , , , ,

I still love the fall . . . but

1 Oct

Fall has always been my favorite time of the year. I live in Surf City, USA, walking distance from the beach. I love it here. Summers are crowded with vacationing tourists and locals sometimes roll their eyes a little bit over the people that invade our home for those three solid months of summer. But, I actually like the summers too. I like that I live somewhere where people want to come and spend their vacations – it is a great reminder of how lucky I am to live here. And, I even enjoy the crowds – especially knowing that it is a temporary condition. Sometimes I walk down to the beach on a July or August day and it looks like there is one large pep rally going on, a sea of umbrellas, beach blankets, and sunburns. And then there are my family and friends that come to visit (maybe a little bit more often in the summer – to escape the inland heat) and my downstairs tiled entrance is covered in sand, and I like it because it reminds me that my nephew has just visited.

IMG_0897

This is my empty beach 🙂

But, when summer winds down and the crowds leave and fall approaches – that is my favorite time of year. Surf City returns to this little small town. The crowds are gone and it is just “us”, those who live here year round. The locals here know each other, I often walk to a local breakfast place and they know my name (no, it isn’t Cheers and I am not Norm). They know what I am having for breakfast and I am asked if I want my breakfast now, or “do I want to sit for bit” (I like to read the paper). I visit with other regulars. It is nice. And the beach – the empty expanse of the beach in the fall

Pink Ribbon chocolate lollipops for Breast Can...

Pink Ribbon chocolate lollipops for Breast Cancer Awareness Month. Saving lives one processed, sugar containing ribbon at at time? NOT.

– is truly remarkable. I feel like it is a secret because if people only knew that the beach here is empty this time of year – surely they would come. The weather is amazing right now, the sunsets are glorious and I am grateful to have this all right here where I live.

This is my favorite time of year. But, October . . . not so much. I still love it here. And, thankfully the beach does not become riddled with pink ribbons. I am grateful for that. But everywhere else? It is Pinktober.

I most definitely do not like Pinktober. It has always felt like this big scam. And when my Aunt was dying of breast cancer the sea of pink all felt so wrong to me. What had big pink done for her? What had the Susan G. Komen Foundation done for her? They did not help her get better, they did not “race for a cure” for her. They did not race for a cure for me. They did not race for a cure for any of my friends who have metastatic breast cancer and they did not prevent my Aunt or any of my friends from dying.

I have thought a lot about how I was going to deal with Breast Cancer Awareness Month, the pink onslaught.

Would I write scathing articles about Susan G. Komen’s hoarding of all of the breast cancer research funding and how they have – for so many years now – hijacked the lions share of breast cancer research funds and not actually put it towards research? (In 2010 the Susan G. Komen Foundation only put 14% of the 389 million dollars they raised in the name of “racing for a cure” towards research – the rest of it went to, oh I don’t know: maybe salaries – like Nancy Brinker’s $600,000,000 plus a year salary, to pink port potties maybe, to pink golf carts, maybe . . . who knows . . . but it didn’t go towards research).

Would I skip shopping for the next month (as I did for the most part last October) to simply avoid being bombarded by the pink? Would I refrain from speaking up in a grocery store line, and telling people how I really feel about SGK and pink-washing, when I am asked if I will “donate money to breast cancer”?

Every time I was in the check out line of my local grocery store last year, I was asked “if I wanted to donate money to breast cancer” . . . I don’t even know what that means – donate to breast cancer. I sometimes wanted to respond with: “No thanks, I donated my breasts, some lymph nodes, and peace of mind to breast cancer . . . I think that is quite enough for now.”

It is all this big giant shell game really. “Here, let me take your money for buying that pink ribboned, processed, cancer-causing, hormone-disrupting “food” product and we will put some of that money towards . . . something and you will feel like you have done something good today”.

I’m not saying that money does not go to research. I am saying that not enough money goes to research. And, I am saying that I think we have enough awareness – at least of breast cancer – that it exists.

But, some are unaware that after all of these decades of pink, decades of “races for the cure”, decades of “awareness”, and decades of Pinktobers, mortality rates for breast cancer are basically the same, unchanged. So where’s this race they keep talking about? I think it has been pretty much a run around in circles. And for someone who has attended a few “races for the cure” I can say that there has been little or no attention to metastatic breast cancer at these events. Metastatic breast cancer is the only kind that kills. It is the kind that killed my aunt. It is the kind that has killed my friends. It is the kind that will kill more of my friends and it is the kind that could kill me if the cancer I had were ever to recur.

That is what bothers me. I could stand the pink a whole lot better if I thought it were actually doing something.

I still haven’t figured out what I am going to do this October. I know that I am going to live my life, run my business, play some music, take walks on the beach, participate in the 12 week breast cancer “Step by Step” clinical trial (it is an exercise program for breast cancer survivors and it started yesterday) and I am going to be grateful and I am probably going to agitate a little bit . . . because that is how change happens. And we most definitely need some change.

Tags: , , , , , , ,

Oh Benign, Won’t You Be Mine . . . Forever . . . Please?

18 Sep

I received good news, such very good news – my biopsy pathology came back clear – as in “benign”, as in: cancer free. Thank you so much for your thoughts and prayers. It has meant so much to me, it is truly what carried me through what was an unexpectedly very trying time in the post cancer, potential-land-mind, landscape.

It has been quite a month, so much has happened (on all fronts: personal, work, music). It has been such an intense time on so many levels. I don’t even know where to begin . . . so perhaps I won’t 🙂

I learned something new last night – a term called “vague booking” which is apparently the posting of Facebook posts that really say nothing at all (are vague) but insinuate something exciting or mysterious or . . . whatever 🙂  So, I guess I am going to “vague-blog” a bit.

Simply (or vaguely) put, the past six weeks or so have been challenging, wonderful, exciting, scary (nothing like spending over three weeks waiting on biopsy results), and did I say exciting? It has been a bit of a whirlwind and mostly in very good ways. The past six weeks have included some of the very best days of my life and sadly some very bad ones too (having friends get diagnosed is hard, so hard).

How is that for vague blogging?

So while I am cancer free, so many friends were diagnosed in just the past month. That has been particularly challenging. On the day I found out my good news: that my biopsy results were clear, a girlfriend of mine learned that her mom has breast cancer. And she is just one of, very sadly, way too many.

While I was waiting for my results, I was talking with newly diagnosed friends and telling them: “You can do it, I got through it and I am healthy now and you will be too”

It was hard to say that these past few weeks – not really knowing if the “I am healthy” part was still true.  I hoped and prayed it would be true.  I am so grateful. Now it is back to my life. I have a new perspective this time.  I have become reacquainted with many things in the past couple of months that have been absent in my life since cancer found its way in to roost. It has been a wonderful time and I am excited about what the future holds.

So for now that is all.  Oh, that and one of my favorite sunsets from the past couple of weeks:

HB Pier Sunset

Sunset in Huntington Beach, something I am committing to seeing (hopefully) every day 🙂

I am so grateful for your continued prayers and support. It is so amazing and so wonderful. I am so, so very grateful.

Now I am off to see if I can convince a friend of mine that radiation won’t be the worst thing in her life. This is a much easier thing to do knowing that I am still cancer free.

I will be back here before “Pinktober” (blech) . . . so much to change, so much to do.

Much love and peace.

Gratefully yours,

Lisa

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

 

Tags: , , , , , , , ,

Motivation Monday

26 Aug

I LOVE this from Journeying Beyond Breast Cancer: Motivation Monday 🙂

Journeying Beyond Breast Cancer

 

life is short

View original post

Pieces of Me: Life After Cancer So Far . . .

24 Aug

Just reread this post from some time back and realizing how far I have come and how grateful I am today. 🙂

cancerfree2b

I just finished teaching 8 weeks of classes. It was intense and demanding and it was the first time teaching this course since I finished treatment for breast cancer. When I was first diagnosed, I was not sure I would ever finish treatment, survive this long, go back to work, or ever feel better. Teaching was hard. But, I am back.

I am, piece by piece, attempting to get my life back.

I remember joking with a friend of mine this time last year after he remarked how it was good to see me still in one piece . . . I laughed and told him that it was “the piece that was still left”. (After all there had been surgeries and parts removed).

I thought it was very funny at the time. I know some of my friends thought it was odd that I made fun of my disease. But, it was…

View original post 849 more words

The limbo that is survivorship . . . well, at least I can cook . . .

24 Aug

I came across this post from some time back about survivorship and the limbo of it all. I was struck by the fact that I was cooking so much back then. I am reposting this again to simply remind myself that a) I CAN cook (so I have NO excuse for letting that go for the most part lately) and b) I am much better these days than I was back then, except that I was a better cook 🙂

cancerfree2b

According to the Centers for Disease Control (CDC), there are nearly 12 million cancer survivors in the United States. That is a pretty big number. The CDC defines a cancer survivor as “anyone who has been diagnosed with cancer, from the time of diagnosis through the balance of his or her life”.

According to this definition, I was a “survivor” the same day I became a cancer patient. I sure didn’t feel like one.

There are many definitions of survivor. The CDC’s definition seems to be the most broad. But, regardless of how “survivor” is defined, survivorship care is something that seems sorely lacking. While survivorship care is a hot topic for blog posts, books on life after cancer, and websites like Livestrong and the Mayo Clinic’s website, there seems to be a disconnect between what you see online or in print and what you actually get from your doctor. Obviously…

View original post 1,359 more words

Waiting is no longer the hardest part . . .

22 Aug

It used to be that waiting for test results was the hardest part. I will admit that my appointment with my oncologist – taking a different turn than I anticipated – absolutely threw me for a loop. But, I have had a few days to get my head around it. I no longer have sweaty palms, nausea and sleepless nights. I had a hard time on Monday night and Tuesday. But, then I decided to snap back into the life I have . . . the truly wonderful life that I have . . . and simply enjoy it. And, I have decided that should the news be bad, well, then the news is bad and I will endeavor to continue to enjoy my life.

I am no longer fearing the results – at least not completely. There is a part of me that is resigned to it . . . to the possibility of receiving bad news. To say that I am not fearful of getting bad news would be dishonest. But, I have accepted that it is a possibility. I have so many friends who are currently facing cancer for a second and even third time and many who are stage IV and who have run out of treatment options. So when I think of my own situation – that there is this possibility that the suspicious area is a recurrence – I really can’t get too worked up over it. What can I do? There are signs that are not good and then again, it could all be fine.

All I can do is hope and pray and ask others to do the same 🙂

IMG_0508

Found this sign carved into the dirt yesterday 🙂

I am a bit upset that back in June – when the red spot appeared on my left breast – that my primary care physician did not test for anything other than skin cancer. The lesion – after all – appeared on my breast and  I have a history of breast cancer (DUH)! But, I am also (was anyway) upset with myself for not second and third guessing my doctors like I used to always do.

I have let my guard down. I have become more trusting of my own body and of my doctors – that this was just some routine thing and that benign meant benign. How was I supposed to know that a biopsy of skin on my breast would not detect breast cancer unless it was specifically run for breast cancer markers?!!! But, that is just it, the old, hyper-vigilant patient that I used to be would have asked that “stupid” question. But, instead I trusted my pcp doc. And when he gave me the test results that the biopsy was negative for cancer – well, I presumed that meant any kind of cancer.

My six month check up with my oncologist unveiled another possibility – that the red spot (now being unaffectionately referred to as a “lesion”) could be a breast cancer recurrence. First the nurse examined me. “What about this lesion here, how long have you had that?” I was taken aback by this small red splotch of a bump being referred to as a lesion. What did that mean, I thought. She did not like the looks of  it. She quizzed me about the biopsy that had been run on it:

Had the doctor run ER, PR, HER2 markers? How long ago was this biopsy done? We will need to get that block from the pathologist and blah, blah, blah, blah, blah . . .

I heard nothing after that . . . she left the room.

A few minutes later, I heard my oncologist and the nurse talking outside the exam room: “Her lymph nodes are swollen on the left side” . . . “yes, the lesion is on her left side” . . .

Shit. Shitty-shit-shit-shit-shit! Take a deep breath.

IMG_0493

I sat in the exam room, listening to their conversation outside (the nurse filling my oncologist in on what she discovered in her exam of me a few minutes prior) and then the hushed tones that followed that I could not discern . . . were, well, disconcerting not to mention the fact that it made me feel like I was a five year old. I get it. They don’t want to alarm me. I get it. But, it only served to alarm me. And I don’t like it when doctors and nurses refer to me in the third person. It is weird, simply weird. Takes me right back to being a cancer patient, to days when I was too weak to be the person that medical staff talked directly too, too sick to take in the information, too sick to be trusted with it – so they told a friend in the room or my parents. I detest those days. I long for those days to be over forever. And then I think of my friends who are enduring days like that with really no hope of anything more and I feel guilty for even asking God or anyone for something better for myself. Part of that survivor’s guilt – a recent topic in the cancer world.

My oncologist is an amazing doctor. But, her new nurse could use a little work on her bedside manner. I know she is just doing her job and she was (for which I am grateful) very thorough. The last thing I need is for yet another doctor to not run the proper tests. That would not be good. But, I would have preferred her to have filled my oncologist in on her findings either out of my hearing distance – or – to simply have done it in the room with me.

I don’t know how I would face cancer if it were to happen to me again. I just know this: I am happy today. I am healthy today (at least I feel that way) and if someone tells me I have cancer again, then I will still view my body as healthy. I will still view my body as capable of healing. I don’t have any other choice. And, at this point, there is absolutely no benefit in borrowing trouble or wondering “what if”. I spent too much time doing that already. When I was diagnosed with breast cancer in 2009 I was urged my my doctors to attend support groups. I tried it. I attended a breast cancer support group but found it pretty difficult. I then attended a support group for young women with cancer (all types). That group was a bit better. But, ultimately I stopped going.

I haven’t gone in a few years. But, I have stayed in touch with the women I met in the beginning. I am the only person from my support group that was diagnosed with HER2 positive cancer that is alive and N.E.D. (No Evidence of Disease). Everyone I met has had a recurrence and is either facing treatment now or is sadly, already gone. That is part of the reason it has been so hard to let go of cancer being this ever present thing in my life – the constant news of friends getting bad news and the loss of so many friends to this shit disease.

The daily pain I used to wake up with also made escaping thoughts of cancer seemingly impossible. It was, after all, the cancer (treatments, surgeries, etc.) that made my days start in pain and end in pain. So, not thinking about cancer was pretty hard.

But, this past year I have lived more cancer free than ever. I am grateful for that, so grateful. It is a freedom that I have longed to feel for some time. I have lived longer than I was told I would likely live and for that I am so very grateful. I hope, of course, to have many more cancerfree years. But whatever comes my way I will do my best to live the way I want to and need to.

To that end, I have decided to do one thing for myself every day and that is to see the ocean. I moved to the beach after I completed treatment. It was a goal of mine to be near the ocean and to live more simply. I am very lucky to be here (in all senses of that word). I go to bed each night with my window open and listen to the waves. That is an amazing and wonderful thing.

Yesterday I went on a four mile walk with a friend. There is a beautiful preserve here – lots of birds, water and grasses and just beautiful scenery and a nice walking trail and view of the beach.

Today was my first official day of “seeing the ocean every day”. Here are some pictures of today (and yesterday’s visit too).

I appreciate your prayers and good wishes. It means so much to me, so thank you.

Much love and peace,

Lisa

2012-11-01 17.52.48IMG_0459 IMG_0468

← Older Entries
Newer Entries →