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It has been a while . . .

2 Oct

Hi all,

It has been a while and I have some updating to do! First, I have been locked out of my blog and just now regained access. Not easy to do with WordPress, but ultimately we were successful.

My last post was in October of 2014. Not too long after that, I was not feeling well. I was treated for bronchitis. Since I was in remission for five years, no doctor thought to order scans. So in in April 2015, while traveling abroad, I became pretty sick. A few weeks after I got home I went to the emergency room and that is where I got the news that I had metastatic breast cancer. I was told I likely did not have much time. I was in liver failure, had lung, bone, liver and brain mets. I was offered a reduced chemo in hospital. My doctor said that we could try it and if we might be able to buy a little time. She was very clear that without treatment, I would likely be in hospice within a couple of weeks.

I decided to try the reduced chemo. My liver tolerated it. They ran it very slow and gave me an 80% dose. I continued treatment on a daily basis for quite some time. After spending about 10 months, seven days a week, at the Cancer Center where I have treatment, my liver was clear and I was considered NEAD (no evidence of disease). But, brain mets continued to appear despite gamma knife procedures. I am going to fast forward a bit as I do not want to rehash everything since 2015. I continued treatment through today. Still have treatment and will always have treatment. That is mbc.IMG_0341

So here is where I am at:

I am here! Which, if I think about it, is pretty amazing!

And while life is not always a bowl of cherries, I am considered “stable” right now. I have a PET scan this week. Obviously hoping everything remains stable or is improved.

I stopped writing here in October of 2014 because my heart was just broken. I lost so many friends. I felt I had said all I could say about the inequities in research for metastatic breast cancer, was so tired of the pink washing and really needed a breatk.

I felt guilty about not writing. But, I just had to take a break. I did not intend to take this long of a break. But, with grueling treatment and just trying to survive, blogging was just not something I could keep up with. So one week became two, a month became several months and then I was diagnosed with metastatic breast cancer. I did not want to journal publicly about it. In fact, I shared this new diagnosis with very few people initially. I have been writing to a small group of friends on a private page on Facebook. So I have had that, and needed that very much.

I have continued to work as I can. Although, I have been told to retire. I just don’t have the ability to do that and quite frankly, it is good to keep moving and working as I can.

I need to update the “About me” page. But, I am not up for it right now. I will return to it.

When I picked the name for this blog – cancerfree2b – I knew full well that for me, given I had an aggressive type of breast cancer with a high rate of recurrence, that I might one day be stage IV. I thought about the name cancerfree2b and what that would mean to me if I had a recurrence. I decided then that it would always be a state of mind that was worth pursuing. No, I am not cancer free. But, I do my best to not think about it all of the time. I do my best to live in a way that is not completely run by cancer. This is not an easy feat. But, I have a lot of good days.

It is October, Pinktober. Ugh. I will be writing about that and the pink nonsense that I dread. Pink is not a cure, breast cancer is not sexy or fun. Early detection does NOT save lives. Anyone can get metastatic breast cancer, early detection does not prevent metastatic breast cancer.

Hoping to bring attention to the metastatic breast cancer – the only breast cancer that kills.

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??!!!

Screen Shot 2014-10-06 at 2.11.36 PM

 

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.

So glad to be on this side of things . . .

14 Jun

I checked my site stats for this blog today and saw that the top searches were for the following:

Screen Shot 2014-06-14 at 4.10.42 PM

1) are nights sweats a symptom of breast cancer and/or symptom of estrogen responsive breast cancer, and

2) I have cancer leave me alone,  and

3) 6th chemo could be not so bad

AWE . . . and an extra awe for the last one. Do I ever feel for that person. My sixth chemo was nearly five years ago now. And, it wasn’t so bad, not really. Chemo number 2 and 5 were by far the worst . . . in case you are reading this, whom ever searched that last search, number 6 does not have to be so bad. Mine wasn’t. Although it was a bit anti-climatic because it was still early on in my treatment (had a year of Herceptin to complete and still had many surgeries ahead of me including the one that really changed my life, a bilateral mastectomy as well as radiation. It was quite a year. Been a long haul, still not completely “over it” really. But, it is what it is.

Today was a pretty great day. Went to Venice Beach and walked from Venice Beach all the way to Santa Monica and then to the Third Street Promenade and then all the way back. Something I definitely could not have done a few years ago. And, I walked at a pretty good pace, wasn’t tired a bit. I remember three years ago a friend of mine took me to Santa Monica and I could barely walk up the hill from the Pier to Ocean Blvd. I had to stop a couple of times to rest. It was a very discouraging time.

So for whom ever you are, searching for “6th chemo could be not so bad” . . . I hope your 6th chemo is not so bad and I hope your recovery from all of this is quick. Know that it does get better. I know there are no guarantees but, it is the only way one can think when in the midst of chemo.

I have to say it has taken much, much longer than I expected to get better. But, I am rather impatient. Always have been. Cancer has made me learn a knew level of patience. And it has also lowered my tolerance in some other areas. My doctors all tell me I need to be more patient. But, quite honestly I think it has been my impatience that has helped to get me through.

And, for the person who was searching “are night sweats a sign of estrogen responsive breast cancer” – I so vividly remember those days of worrying about whether I might have cancer and being turned away by my doctor who rather than simply send me for a mammogram, told me I was just experiencing some hormonal changes and blamed it on the fact that I had not yet had children (unfuckingbelievable now that I think about it).

So, in my case, the answer was yes, night sweats were a sign of estrogen responsive breast cancer. It doesn’t mean that yours are . . . but, get to a doctor and be persistent. My doctor ignored my complaints for six months while I whined about how I woke up drenched several times a week . . . it wasn’t until it was time for a mammogram that I figured it out. I am not one to seek out regrets, but if I could give any advice it would be to definitely pursue getting yourself truly checked out. Trust your instincts and your gut. I can’t say anything would have turned out differently if I had been better informed (or if my DOCTOR had been better informed) but, if I could have avoided a mastectomy . . . well, that would have been really nice. But, I am here and having lots and lots of pretty great days these days.

Sigh. Those searches made me feel pretty sad for whom ever was searching . . . and super grateful to be well.

Wishing you well out there.

Love and peace,

Lisa

New Yorker essay worth a read, but grab some tissue . . .

10 Apr

I found this essay last night and thought I would share it. It is written by a son, on the loss of his father. Really beautiful. The essay is called: “Nobody’s Son” by Mark Slouka.

You can find it here:

Nobody’s Son

 

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.

Bittersweet . . .

8 Apr

I’ve been working on organizing things at home – like medical records, what to keep, what to shred. Clothes, what to keep, what to donate. It has been a while since I have been able to tend to things at home. I finally have had some time outside of work – 15 hour days running my business (which I thoroughly enjoy doing) I am not finally able to spend some time working on some things at home. I don’t think I have done that in a few years – instead it has been all about work, work, work and more work 🙂

I really haven’t had time for much of anything other than work for the past few years now. Restarting a business was a challenge, but extremely rewarding. It has been very satisfying to reboot my business after cancer  – but doing that left little time for anything else but work. And, let’s face it, it isn’t like cancer just up and ends one day and you immediately go back to your life. Nope, no way. Although, I would like to believe that and still see it as a goal of mine 🙂

When I think back on the past several months even – with a reconstructive surgery not that long ago – it is kind of amazing that I am doing what I am doing (okay, it was only outpatient surgery, but still). I played my first post op gig this past weekend. It didn’t even occur to me until I was just a few hours away from playing my beast of an instrument that maybe it wouldn’t go so well given I only had surgery two months ago. But, it worked out and I had no problems.

I spent my weekend among friends. I enjoyed playing music with a new group and at a new venue. I got in a really great work out today. I took a walk on the beach this evening and watched a beautiful sunset. I walked home and thought to myself how lucky I am to live here, to be alive and to be well. Life is good.

Some years back there were days where walking was so labored and slow. And, there were days when I could not walk at all. And, there were those days that were plagued with thoughts of death and complete despair. It is quite something to be taking the kind of walks I am taking today. It is quite something.

birdslifeguardtowerbeach

So I came home from my walk and posted a few sunset photos to Facebook (see above). I don’t know if it is the home organizing mode I have been in, but for the first time I noticed that I had “58 unread messages” on Facebook. How does one not notice that? Okay, well, I don’t pay much attention to Facebook really, that is how…

I immediately thought: I bet these are from 2009 or 2010 – the year I lost to cancer. Hmmm. I proceeded to look at those messages and I was about knocked out. Some were the: “hey, checking in to see how you are doing” kind of messages and some were offers of help. I started to cry. Reading through one message after the next. Tears over all of the kindness, concern and simply missed messages. All went unanswered. Although certainly some were from people that I connected with by other means – so they were not technically un-responded to, still, just sad. And, then it got worse. As I read through message after message I started to really feel anxious and worried over what I thought could be there waiting for me, what I thought I could have missed.

And there it was a message from a friend who is now gone. And then another message from her . . .

My heart sank as I clicked on it to read her words. Words I was supposed to read years ago.

She was diagnosed around the same time as me, with a similar diagnosis, we met online and became friends. Not long after completing treatment for early stage breast cancer, she had a recurrence. The cancer came back and this time it was stage IV – metastatic – the kind of breast cancer that kills.

I never saw either of her last two Facebook messages until today. Over two years after her death I am reading her words; and somehow I am devastated and grateful all at once. So happy and grateful to see her words again, even though I never had the opportunity to reply. But feeling her death all over again.

Thankfully it wasn’t my last communication with her – it was just the last communication through Facebook. I missed it, and now I have two messages that I can no longer reply to because she is gone.

That damn chemo fog and treatment roller-coaster took away a lot of days and a lot of focus. I missed out on those messages. Weird. Strange. My heart feels empty and full at the same time and very sad. I am grateful for her words and grateful that I saw them today. Such a gift. But, I am reminded of how much I miss her – not that I needed reminding. I think of her all of the time.

One of the hardest things about cancer is also the best thing about cancer (cuz let’s face it, there are so many “best” things . . . NOT).

Best: the people I have met that I would never have met.

Worst: the people I have lost and will lose.

That is the worst, worst thing ever.

I never would have imagined in a million years that such connections could be forged online. But, when another friend passes away, a friend that I have never even met in person, it is a very real and palpable and deeply felt loss. All of us here in this cancer blogosphere/twitter-sphere/etcetera-sphere know this.

It has been a tough few years for so many. Sigh. We need a cure.

Love and peace,

Lisa

 

 

 

Protected: Thoughts on an upcoming cancerversary . . .

26 Feb

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