Tag Archives: survivorship

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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Blogging in a post Keller World

24 Jan

So, I am going to call this era – Post Kellerian. Why not, I can do whatever I want, this is MY blog (sorry Mrs. and Mr. Keller) 🙂

It is fascinating to me how much fascination has come of this whole Keller thing – not the least of which is/was the Keller’s joint fascination with Lisa Boncheck Adams – a woman for whom I have so much admiration I could not possibly find words to adequately describe. But, one would need only to read through her blog to understand why so many of us share a deep respect and admiration for Lisa.

She has chosen to write about her experiences as a metastatic breast cancer patient. Sometimes her writing causes me to shed tears because it is so real and so poignant. The window she has provided into her life through her writings has changed mine deeply. She writes about many things, about pain and loss and about life, her life. Whatever her topic, always, her writing – to me – is beautiful. The fact that the Keller’s were bothered by her tweeting and blogging is so strange to me – especially coming from a former New York Times editor. I would think that a journalist would understand (and appreciate) more fully the fact that Lisa chose to write about her experiences and share these experiences online.

We are all entitled to our own opinions. But, something about the Keller’s focus on Lisa seems, well, just really strange and pointless. I had the opportunity to read both Bill Keller’s Op Ed and his wife’s piece (prior to her piece being removed “pending investigation”). My take on all of it is that they were both a bit emotional and reacting without really reading or perhaps even understanding who or what they were writing about. For example, Bill Keller repeatedly referred to Lisa in the context of being a “cancer warrior” – which is language that Lisa (if you actually read her writings would know) does not embrace at all.

So much has been written about  all of this – and by writers who are far more eloquent than I – so I don’t think I have much to add. But, I do feel that something has changed now after the Keller’s wrote about (and in my opinion, attacked) Lisa Boncheck Adams for simply writing about her OWN experiences and choosing to share these experiences online. I personally have benefited greatly and have been enriched by reading Lisa’s blog. No one forces me to follow her or to read her posts. It is my choice to read what I want and when I want. So that – the fact that the Keller’s are offended by something that they don’t have to even face, read, watch, hear about or “follow” – is what I find most ridiculous about all of this.

So, now I am writing again in my own blog and thinking a bit before I decide to write about my most recent experience with breast reconstructive surgery. How much am I now comfortable sharing in this Post Kellerian era? I really am giving that some serious thought now. (Not that Bill or Emma know who I am or care, but it does make me pause just a bit). Bill Keller’s piece was an “op-ed” piece – so it is his opinion. But, if you read his wife’s previous piece in The Guardian – you might see Bill’s op-ed as less op-eddy and more a defense of his wife. Strange uses of publications like the NYT and The Guardian – if you ask me.

I am proud of my blog. Not that it has changed anyone’s life particularly, but it has changed mine. I write mostly for myself. What began simply as a way to keep family and friends around the country informed on my treatment (and thus spare myself and my family the need for time consuming phone calls to say the same thing over and over again – during a time when I needed to reserve as much energy to treatment and healing as possible) turned into something else. It turned into many things actually.

One wonderful and unexpected thing my blog became was a way to connect with others around the world who are either going through, have gone through, or have family members who have had (or are going through) breast cancer. It catapulted me out of my living room and into a shared universe that is #BCSM (breast cancer social media) on twitter and it connected me not only online, but in person, with so many amazing and wonderful people. I was invited to a blogging summit and have been offered speaking opportunities, including a spot on a radio show. None of this was something I looked for or sought. But, I am most grateful for the real, human connections that this blog has enabled and even carved out. I am so grateful for the friendships that I have made. If I had not blogged or tweeted, I would never have made these friendships. Social media before my cancer diagnosis was something I knew very little of and even thought was kind of silly – why would anyone want to “tweet” I thought?

But, I am so glad that I found this space and joined it and I am so grateful for all that I have learned and continue to learn from so many amazing bloggers (and yes, tweeters).

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At the risk of causing distress or shock to either of the Keller’s, this is a photo of my IV line right before my recon surgery last week (took the anesthesiologist four attempts to get a vein and place this IV) and he beat me up a bit in the process (I mean that literally – he slapped my arm and wrist and hand repeatedly to get a vein to show up – lazy bastard – heat compress works without inflicting pain) OOPS!!!! Am I not supposed to talk about this post Keller? Sorry, I know, only pretty photos, pink ribbons and happy talk #fucancer and you know what? #fubillandemma #lookaway

Love and peace,

Lisa

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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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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.

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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.

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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.

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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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Easter has become my Thanksgiving . . .

31 Mar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Easter! My nephew Garrett, sheer delight!

Easter 2010 🙂

 

 

 

 

 

 

 

 

 

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

Much love and peace,

Lisa

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

31 Dec

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

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

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

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

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

I Can’t Give You Anything But Love Baby

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

Love and peace,

Lisa

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