Tag Archives: survivorship

Some days are simply back breaking . . . LOL

29 Dec
Red Rock Crab, Cancer productus

Feeling a little crabby after falling down the stairs. I wonder if my bones are stronger or weaker than this crustacean’s?

Okay, maybe this isn’t funny, but it is to me.

First of all, I had an amazing Christmas with my family . . . truly memorable. The only sad part was that more of my family couldn’t be there (I missed my beautiful niece and nephew and one of my brothers – their dad). But, fourteen of my family members were able to come over and we had a great time. We had a tappas Christmas (my new thing post cancer). I will post pictures soon.

I made a sangria this year and it was colorful and beautiful. I also made several other dishes as did family members, it was a wonderful feast, but most of all it was just a wonderful day with family. We played music (my Dad played the piano, Christmas songs as well as some great jazz standards and I joined him, to the best of my abilities, on the bass. I have some video of his playing that I will post here soon.

I learned knew things about them, interesting things and it was so wonderful to have an opportunity to catch up with them and to learn about what is going on in their lives. So often it has been about “how are you doing Lisa” and so “are  you good now?” etc. It was nice to not have it be all about me and my trials and tribulations . . . it was a much needed and pleasant escape from cancerland.

And then I slipped while walking down the stairs (I swear, there was no Sangria involved – I was wearing stockings  – no shoes – and walked down my carpeted stairs and my feet slipped right out from underneath me and down I went . . . down several steps to the bottom landing on the tile floor. It was quite a jolt (several jolts actually). But, I thought I was fine and would just be sore.

The next day I was in quite a bit of pain. By the second day it hurt to breathe, I’m figuring now at this point it might be more than some bruising. So I go into to see my doctor and dang it if I don’t have stress fractures. Chemo can weaken your bones. I have had bone density tests and have been told that I have osteopenia, but that it “isn’t bad at all”. I have come to learn that when someone tells a cancer patient that “it isn’t bad at all” that this means that it is bad, it just isn’t bad given the possibilities of bad – it is like a bell curve of sorts (I think). It ranges somewhere between “you have the ‘good’ kind of cancer” (whatever the bleep that means) to “I’m sorry . . . ” (that means you have the really bad kind of cancer – as if there are good kinds). The point of all of this is that I am a success story – so far. I am alive, I am seemingly healthy. I made it through an aggressive cancer, through aggressive treatment and came out of it N.E.D. (no evidence of disease). I have even had my oncologist on occasion refer to me as “cured”. All pretty great things. So in the scheme of things, when you look at the possibilities of what could have happened (never surviving treatment, etc.) having osteopenia really “isn’t bad at all”.

But, now I realize that it means that my bones can break. This can happen to anyone. But, it can happen to me more easily than some and certainly more easily than most people my age. But, I am not one to compare myself to “most” people. It doesn’t help me much. I am in a lot of pain right now and I am limited in what I can do physically for a time. But, that is it. It will get better. And in the scheme of things . . . “isn’t [that] bad at all”

I am disappointed that I will not be able to run the half marathon I signed up for – it is in six weeks – I should be running most days right now to prepare for it. There will be no running for some weeks. Not sure how many, but I am definitely not going to be able to prepare adequately for running a half marathon by February 3rd. So I am planning on walking it again (walked it last year, promised myself I would run it this year . . . oh well . . . maybe next year I will run it).

So I am disappointed. I admit, I was really depressed about this a couple of days ago. But, now I am resigned to it, it will get better, I will get better and hopefully I will get some help with things around my place (lifting is not on my agenda right away). Oh, I really should post the list of things that I am not supposed to do – it is quite hilarious – apparently I am not allowed to go taboggening or snowmobiling (although sledding was not on the list . .. hmm). It is a pretty funny list.

I am going to try walking on the sand (not sure if that is going to hurt more or less than walking on a sidewalk) and I am going to increase my swimming as much as possible (I still have this fantasy where I will actually be able to pull off running at least some portion of the half marathon). But, I am not going to be stupid about it.

Well, I should be sleeping.

I wish everyone a very Happy New Year!

Love and peace,

Lisa

Coming up for air . . .

11 Dec

I don’t even know where to begin. I have started to write a blog post so many times in the past several months, but have not been able to finish one. I have so many “saved drafts” of what should be a simple, easy thing to do – writing a blog post – but nothing. I haven’t been able to get past the first few paragraphs because if I were to continue with something I would actually make public, well. then it would not be true.

So instead, my only contribution lately has been to re-iterate my complete disdain for the Susan G. Komen Foundation, Nancy Brinker et. al. and that is about as far as I can get.

I just haven’t been able to speak personally here at all. It is just too much.

It is all fine and good when all you have to say is that the coast is clear, things are getting better, “I’m feeling stronger every day”, “everything is so much better now”, “cancer is behind me”, oh and let’s not forget my favorite: “I’m so grateful”.

First of all, I am grateful. Grateful to have celebrated, just a few day ago, another birthday. A birthday that a few years ago I had about a 50/50 chance of having . . . so yes, I am really, really, really grateful.

But, for some reason, as I make my way back to a more normal life post cancer, I am finding it harder and harder to cope with post cancer life. Because, you see, there is no real return to your life before cancer, there is no “cancer is behind me” – at least not in the sense that cancer ends and you go right back to the way things were before. And, I am not saying that I want to go back to the way things were before entirely. But, let’s just say that I liked feeling like I had a path and I knew what that path was and I was able to handle my life.

So I haven’t had much to say here. I jumped in only once during the month of October and that was simply because some idiot posted a nasty (and mostly just ignorant)  comment on one of my posts from last year where I asked Komen to leave me alone. I had to respond to this person because, well, I had to. I highly doubt that my reply has convinced this person to stop drinking the Komen Koolaid, but, I gave it my best shot.

I find it is easier to express myself in areas cancer related when it is confined to the following situations 1) talking with someone who is newly diagnosed and who needs some support, encouragement (“look at me, I am fine, you will be too”, etc.) or 2) calling out Komen for their misleading use of “for the cure” when in fact they (in my opinion) are more interested in their own commercial branding, the PINKWASHING of corporations and the continual re-perpetuation of lining their own Komen pockets and the pockets of those companies for whom they sell their pink ribbon in the name of pink washing . . . NOT the cure they constantly profess. (For those who have not heard of the term “pinkwashing” it refers to the practice of companies who produce products that actually cause or increase the risk of cancer paying for a pink ribbon – a “for the cure” stamp of approval – which then leads people to further purchase these cancer causing products, consume them and actually feel good about it). Pinkwashing is bad. But perhaps one of the most horrific things that Komen does is to to claim that they are “for a cure” and yet only donate somewhere between 14% and 19% of the money they raise in the name of a cure to research. (Some years Komen has raised nearly $400 million dollars – just think that if instead of only donating about 14% of that money to research, they donated 50% or 80% . . . now that would be something, wouldn’t it)?

See . . . this is all I feel comfortable writing about. It IS important to tell this story of Komen – the very true, very wrong story that IS Komen.

BUT, I have a life. And that life is one that has become increasingly difficult to share about here, online. I have felt guilty about not sharing here. I feel as though I have abandoned a commitment that I made. There are a group of women bloggers who are devoted and passionate about writing – this is true awareness (and it is awareness that Komen does NOT provide). There are women that have taken up the cause in every way and continue to do so, they don’t give up – women like Anne Marie at Chemobrainfog, Kathi at The Accidental Amazon, Phillippa at Feisty Blue Gecko, Nancy at Nancy’s Point, and so many others (I have so many to add to my “blogroll” here. In fact, my next post will be a list of bloggers I think you should follow, that I wish I had more time to follow). And sadly there are so many newly diagnosed women who are now joining us here on the blogosphere.

In the beginning I wrote to let family and friends know how I was doing. It was far easier than making phone calls since most of my days were about fighting with my insurance company and simply keeping up with treatment and the sometimes 6 medical appointments in one week. It was a full time job.

Now as I have returned to my real full time job there are many adjustments to make. It has been hard. There was a cancer scare last summer that seemed to trail into the fall and take over the past several months. Fortunately all turned out well. But, it was a series of tests, biopsies and finally a surgery to remove the (thankfully) not so offending tissue. It wasn’t fun. But, as the anesthesiologist told me before I went into surgery last month, “this will be a breeze compared to what you’ve been through”

LOL

I didn’t know whether to find peace in that statement or to simply cry. I did take solace in that whatever was coming was not going to be as bad as whatever had happened before. But, it did really strike a chord with me – that this surgery was going to “be a breeze”. My life since 2009 has been anything but a breeze. But, whose life is? I recall days I could barely walk and the friends that would take me on walks because I couldn’t go alone and so desperately wanted to walk . . . they went with me, walked as slow as I needed to go so that I could get that mile in if I could. Those were some days.

And now I can run. And now I can work a forty hour work week (and then some). And now I am getting my life back. But, there is an expense that comes with that – a lack of balance I guess. I am grateful to be rebuilding a business I had to close down because of cancer. I am grateful for the opportunity to start over. But, I am tired. It is so hard and it is so difficult.

To be reliable in my business, I have to be unreliable in my personal life. That stinks. I hate that. But, what choice do I have? I have been clawing my way back with every ounce of my being to regain whatever I can – physically, financially. To do those two things I have little time or energy for anything else. I am trying to create a new version of my business, one that will fund a more balanced life. But, until then I am working very long hours after which I pretty much just go to bed. I communicate with few people and go out rarely other than work related things. I am determined, so determined to get my life back. But, I am grateful for what I have today and I am hopeful for a future that enables me to do more of what I want.

I miss spending time with friends and family. I miss having time to connect with my friends and family. And, I miss writing here too. I hope to be back in more ways than I am now. But, I am here and so grateful for that. This most recent birthday was amazing. I truly did not think back in early 2009 that I would be here now in 2012. I will never forget what my doctor told me when I asked her if I could survive this. She said, “The best thing in your favor is your youth and that you are physically strong . . . fight”

Those were chilling words for me. When I pressed for statistics I was told not to think about numbers (of course this was because the numbers for me were not good). But, that time is gone now. Those days are over. And now I look toward a future where hopefully I will remain cancer free.

It is hard to keep your eye on that prize sometimes . . . I have lost three friends to cancer in this past year alone. I have seen two more friends diagnosed with cancer. It is an epidemic and it seems to be one that is affecting younger and younger women. Of course I am no scientist. I am simply going by what I see. We need to do something. Komen is not it. (I know, I always come back to that). But, clearly what they are doing is not working. We need real money going to a cure. We need research funded for all types of cancer and in particular – the kind that kills – metastatic cancer.

Well, now maybe you will understand why I haven’t posted anything here in so long. This ramble, jumble of a post is going to be posted. To those of you who have been unable to reach me, who I haven’t called back, or been able to see, please understand why and please accept my apologies. I hope that next year will be one where I am able to have more balance and  can do more than simply work 🙂 But, I AM so, so, so very grateful I am able to work like I am right now. It is wonderful.

I wish everyone a wonderful holiday. I will be spending mine with my family – we will be doing our third annual Tappas Christmas (that is how I celebrate Christmas now post cancer – no more boring turkeys or crown roasts for this girl . . . I’m mixing it up).

Much love to you all and thank you for your continued prayers.

Lisa

P.S. To everyone who has tried to reach me, please keep trying and don’t give up on me. It is not because I don’t love you, I am just doing the best that I can. Things will get better 🙂 I appreciate your understanding. Happy Holidays.

Me and my niece last summer :)

Me and my niece last summer 🙂

Happy St. Patrick’s Day . . .

18 Mar

It has been a pleasant day. Enjoyed some of the rainy day in doors and took a trip out to the Aquarium of the Pacific in Long Beach in the afternoon. It was a very peaceful day. Those are not always easy to come by these days. So I am grateful.

Here are a few pictures from the day (oh since it is St. Patrick’s Day, here is my version of: Danny Boy . . . the words have a new meaning to me these days):

St. Patrick’s Day . . .

15 Mar

A dear friend of mine wrote this poem and shared it with me last year. I re-read it today and it made me think of Rachel and of Christine and my Aunt Anne. So, today I am dedicating this to all of those we have lost. Such beautiful words from a dear friend, whom, until last year, I never knew was such a great poet.

English: Trifolium repens ?

Image via Wikipedia

On This St. Patrick’s Day 

It’s that time o’ the year when I miss them the most
And their memories return like the touch of a ghost.
They are gentle yet painful, like lovers apart
… When you whisper their names they are breaking your heart.Now I see them before me, their laughter and joy
Is a welcome reminder when I was a boy,
When the future ahead was a dance and a song
And we’d be there forever all singing along.

But the future becomes present, and present the past
And Time’s not your friend and Death does not fast
For they work hand in hand ‘till they steal it away
And there’s nothing but tears on your St. Patrick’s Day.

So to those that you miss, give a thought and a prayer
And to those that you love, a kind word that you care
And we live with the hope such a fondness will last
For we all become memories in somebody’s past.

terence a’ mcvicker

All Quiet On The Western Front . . .

31 Jan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love and peace,

Lisa

When Pigs Fly: More Thoughts on Komen . . .

24 Jan

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

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

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

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

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

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

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

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

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

Cancer’s Grip . . .

17 Dec

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

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

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

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

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

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

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

Playing music and singing makes me fo

rget.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Damn, fucking cancer. Fucking cancer.

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

Thank you for your prayers and positive vibes.

Love and peace,

Lisa

Birthdays . . .

30 Nov

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

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

Marahon shoes

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

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

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

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

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

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

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

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

Love and peace,

Lisa

 

Dear Susan G. Komen . . .

27 Sep

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

Here is what all the stink is about.

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

Not So Sweet Smelling After All

But, here is where it really gets smelly:

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

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

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

*Source: Breast Cancer Action

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

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

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

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

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

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

Here is my letter . . .

Dear SGK:

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

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

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

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

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

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

Pinktober comes early . . . ugh

13 Sep

This past weekend while I was reading the paper I decided to take a look through the Sunday paper’s coupons. (By the way, there is almost never anything that isn’t processed, full of chemicals or full of high fructose corn syrup in the coupon items).

Anyway, to my delight (NOT) I found this (see below) the first of the Pinktober ads that we will soon be inundated with, everywhere, during breast cancer awareness month or what used to be known as OCTOBER.

I already feel more hopeful . . .

Wee! Apparently, just like Christmas, retailers make sure it starts earlier and earlier each year. So now Pinktober – the month of breast cancer “awareness” hell – apparently begins a month early. Why should I be surprised. Costco is already selling Christmas items. And why not let them get a leg up on Pinktober? After all, they are curing cancer right? Oh, wait, I meant to say they are “re-branding” . . . isn’t that what Susan G. Komen calls it when they solicit corporations to pay to be pink?

We have all seen it: Pink buckets of Kentucky Fried Chicken, pink Hamburger Helper, pink cosmetics (that often include carcinogenic chemicals), pink, pink, pink. So where does your money go when you “go pink”? Well, here is where it goes if it is going to Susan G. Komen (only 19% of it goes towards breast cancer research, this from a “non-profit” that sues little non-profits for the use of its trademarked slogan: “For the Cure” (TM)). See chart below:

The above pie chart was created by Cancer Culture Chronicles. Her post “Komen By The Numbers: 2010 And Still No Answers” is a major eye opener on Komen, their expenditures and just how it is that Komen has a “four star rating”. And for a breakdown of the math behind where your money goes, see these two posts by Uneasy Pink: here, where she points out that only “two percent of all research dollars go to metastatic cancer research” Uneasy Pink goes on to remind us that metastatic breast cancer is the kind of breast cancer that kills. So what are we racing for anyway? Certainly not a cure. Certainly not if only 2% of the money goes to research for metastatic breast cancer. And check out some more math from Uneasy Pink in this post where she calculates that out of the $59.00 purchase price for a bottle of Komen’s “Promise Me” perfume only a stinking $1.51 of the proceeds go to research. PUHleez!

Perhaps one of the most outrageous (to me) pink for profit items I have seen are the pink alcoholic beverages.

Their Campaign: "Good On So Many Levels" See? We can all feel good when we buy these products even it is a known fact that alcohol consumption increases a woman's risk of breast cancer . . .but, whatever, right?

To be fair, these companies do make contributions to breast cancer research organizations. But, don’t think that it doesn’t increase their sales – there is real profit in going pink. And if you don’t believe the power of pink in selling a product, here is what one customer of Mike’s Hard Lemonade had to say:

“I went to pick up some of the Mike’s Hard Berry, I was told it was temporarily replaced for Pink Lemonade, due to Breast Cancer Awareness . . . I noticed the proceeds were also going to Breast Cancer Awareness Research, so I went out and bought a whole case.” (Emphasis added). For more on Mike’s Pink Hard Lemonade’s “Good On So Many Levels” (blech) campaign, and more customer comments where they claim they are purchasing more because of the good it is doing, click  here:  (By the way, what is “breast cancer awareness research“? I think the buyer may have meant breast cancer research . . . who knows . . . who cares – it sells).

I do not like Pinktober. So what is my problem with breast cancer awareness month? Why does it bother me, you might ask? Isn’t it good to increase awareness? Isn’t it good to raise money for research? Sure, but, when so little actually goes to a cure and when so many products in the pink bandwagon are actually dangerous and increase the risk of breast cancer and other cancers, I feel it is at best disingenuous.

But most of all, I do not look forward to being asked to donate a dollar “for the cure” every time I go into a grocery store checkout (when I know that only pennies of that dollar ever go to research and far less goes to research for metastatic breast cancer – remember – the kind that kills). I do not look forward to the wall of pink crap food at the entrance of and through every aisle every grocery store (I have yet to find a remotely healthy product that has gone pink . . . maybe this year I will find one).

I do not look forward to the false hope that pink sells.

Komen's "Promise Me" Perfume (or what I like to call "Fleur de Fraud"). Cost of this perfume: $59.00. Actual amount of purchase price that goes towards cancer research: $1.51 (Thank you to Uneasy Pink for doing the math).

And I especially I do not look forward to my disease, my suffering, my Aunt’s suffering and her ultimate death from breast cancer, and the suffering of so many other women and men being hijacked for profit.

I do not look forward to my friends and loved ones – who often have felt so helpless in the face of my illness – manipulated into purchasing items that are pink, tricked into believing it is doing me some good or that it will help some woman out there, when in fact these pink purchases often deliver very little to research. And some, deliver none – their promise in exchange for your money? To increase awareness. We need to move past awareness and sink our dollars (not just pennies of our dollars) into research.

And what about the walks and races to raise money for breast cancer? These are often incredibly uplifting events, providing a great deal of support and hope to both cancer patients, survivors and their families and friends. So clearly their IS some value beyond the irritatingly low 19% that goes towards research. Still, in my opinion, not enough. So many show up at these races to do good. I have walked in the past. My friends have walked on my behalf and their doing so has made me feel stronger. Chemobabe wrote a great post about this and dealt with the question of how we can be critical of an organization that makes these experiences (their walks) possible.

And for more reading about Komen try Komenwatch and read here, a blog post by one of my online friends Nancy of Nancy’s Point where she asks SGK for an apology. I agree with you Nancy, I think we all deserve one.

Okay, so you get it by now, Lisa (that’d be me) is not a fan of pink. And now, hopefully, you will have an understanding of why. I am hopeful that SGK (and others who are taking money in the name of breast cancer research) will find the surge of criticism on the web to be constructive and will prove to us all that they can do better than 19%, will do better and will honor their mission (albeit trademarked) to race for a cure (Registered Trademark, Susan G. Komen).

And, just so you know, I have worn my share of pink . . . I wore a pink t-shirt to many chemo and Herceptin rounds. But, I wore that shirt because it had, in very bold, large, black letters the word “FIERCE”.

My Mom bought me this "fierce" t-shirt, it was my "F" word for cancer treatment.

I loved that shirt. It is faded now, having been through the wash many times and worn many times . . . to chemo, to the gym and sometimes to bed. It was as if wearing that word across my chest (and for a good part of the year . . . across no chest) could influence the battle beneath. Fierce. I could make myself fierce even if I did not feel that way, I could make my cells within my body wage the war I needed waged and conquer the cancer.

So, I wore that shirt in spite of it being pink. But, that pink shirt didn’t save me. Research saved me – if I am even saved (I am thankfully, gratefully NED: “no evidence of disease”). Research that lead to the development of Herceptin made it possible for me to still be here. Women who gave their last days of an aggressive cancer to participate in early trials of Herceptin, they saved my life or at the very least, prolonged it.

Awareness did not prevent my cancer. Awareness is not a cure. And, we still, after so many years of pink branding, really do need to race towards research to cure all cancers.

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