Tag Archives: breast cancer treatment

Komen Koolaid . . .

11 Mar

So, Julie of Orange County Komen sent me an email in response to my email in response to her email in response to my blog post: Komen Please Leave Me Alone

Here is Julie’s/Komen’s response to me (first, you may want to read the post below, from Friday):

“Hi Lisa,

I was not the person “chosen” to respond to you. In my position, it is my responsibility to be in the know about what is being said about our organization; your blog past came to me in an alert as did the post you shared with everyone today. My concern was not just to remove you from our list (however it is also my responsibility, along with one other person here to make sure people who do not wish to receive our information are removed from our list), but to reach out to you as a genuine human being, but as someone who can understand the frustration of trying to get help.

Again, I’m very sorry for the response you got from our organization in 2009. I was not here at the time and like I said, just a person trying to do what they can now. Tell me how I can help and I’m happy to do what I can.

 My contact info is below:

Julie A. Guevara

Manager of Marketing & Communications

Orange County Affiliate of Susan G. Komen for the Cure

3191-A Airport Loop Drive

Costa Mesa, CA 92626

T: 714.957.9157 Ext. 30 | F: 714-619-2678

Our Vision: A World Without Breast Cancer

BEST SCIENCE. BOLDEST COMMUNITY. BIGGEST IMPACT.

WE ARE THE CURE”

First of all, I love the “Best Science, Boldest Community, Biggest Impact. WE ARE THE CURE”(sic)

English: Mahindra 6030 Turbo tractor in downto...

I wonder how many women rushed out to get a mammogram after seeing this pink tractor . . . am I the only one who thinks pink porta-potties, tractors, golf carts, etc. in the name of "awareness" are a waste of money? Of course i am not. Sigh.

So there you have it. NO ONE from financial assistance can bother to get in touch with me, to answer my calls, to email me back, etc. But, it is apparently Julie’s “responsibility to be in the know about what is being said about our (komen) organization” and her other job is apparently “along with one other person” to make sure they remove me from their email list. Wow. Now that seems like a great use of “race for the cure” (TM – wouldn’t want SGK to sue me) dollars, doesn’t it?

Okay, so, giving Julie the benefit of the doubt here – she says she was not “chosen” by Komen to contact me and was instead contacting me as a “a genuine human being, but (sic) as someone who can understand the frustration of trying to get help” (her words, not really sure about the grammar here, but, I think she is simply trying to say that she cares).

Okay, well then DO something. FIX what is clearly BROKEN. Komen claims to provide financial assistance to breast cancer patients, provides a number for breast cancer patients to call – but, NO ONE ANSWERS the phone number!!! HELLO???

I am sorry Julie, but, I am unimpressed with your response. And as far as your asking me what you can do to help, I think I have made it pretty clear in my prior email to you. And, in fact, I asked you what YOU could do to help me NOW (since you said that you wished Komen could help me now; wished Komen could somehow “rectify the situation”).

And, still you reply with – let me know how I can help you? I find this disingenuous. Your organization exhausts me. It is smoke and mirrors and a bunch (in my experience) of getting the run around. I asked YOU how you could help me. I told you what my needs at this time are . . . and I got the above reply. Do I expect Komen to jump in and pay all of my bills? No, but, if you truly care, then why is there no interest on your part to at least look into the broken phone number, the fact that there is no form on your website or email for cancer patients to contact you for financial assistance – and yet your organization brags about providing financial assistance to breast cancer patients in need. Please understand this: your organization invited me to seek financial assistance through Komen’s financial assistance program. I got no response ever. I called over 100 times. My story is NOT unique. I have heard from many women who were treated the same way.

Instead, I feel you have just sent me a defensive reply about how you were not employed by Komen at the time I originally sought help. So what? You work for them now. I realize this may all be out of your job description – but, the very fact that this may be the case, shows how broken Komen has become.

But truly, this is my favorite quote from Julie’s email:

“Again, I’m very sorry for the response you got from our organization in 2009″

Response? Julie, I did NOT GET A RESPONSE IN 2009, or in 2010, or in 2011.

I told you before that I was not angry with you (in my previous email). But, I have to say that now, I am a little angry with you. I don’t like the spin, I don’t like the fact that I am hearing from someone from marketing and PR instead of someone who is in a position to address my experience.

I think you have simply drunk from the Komen KoolAid.

If you truly want to help me, truly want to make a difference in some breast cancer patient’s life, then work on fixing the problem. And, if you are not in a position to do so (I understand that your job is in marketing and PR and to search out the web for what is said about Komen – which right now must be keeping you mighty busy) then get this in front of a person who CAN fix the problem.

I will be sure to include the appropriate tags for this post so that you get an alert as soon as possible.

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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

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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 . . .

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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

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Komen: Please Leave Me Alone

31 Oct

Today I was yet again, hit up for money by the Susan G. Komen Foundation for the Cure. This is what they had to say: “take advantage of these last few hours to show that YOU care and want to a make difference in our community” and “let’s use these last few hours to save as many lives as possible”

Here is my response to them.

Dear Susan G. Komen Foundation for the Cure:

I am a breast cancer survivor.

I was diagnosed in March of 2009. My Aunt died of breast cancer in 1994. At the time of my Aunt’s diagnosis I was in law school and Nancy Brinker came and spoke to the women’s law association at my law school. She was there to promote her foundation in her sister’s honor and to urge us all to get mammograms at age 40 and to do self breast exams. At the time I met Ms. Brinker, I could not help but wonder why it was that my Aunt, who was at that time suffering through chemo (and doing so simply to extend her life long enough to see her first grandchild born) had never had any contact with the Susan G. Komen Foundation for THE CURE. I listened to Nancy speak about her sister and about her pledge to “end breast cancer forever”. And, like many, I believed that she meant well. But, no one from her foundation every helped my Aunt. Still, I thought, well, maybe they are so busy “racing for a cure” that they do not have time or resources to help a dying woman . . . my aunt, suffering through chemo, no cure could come in time for her . . . and, after all, that is what Nancy’s foundation was racing towards . . . a cure.

So my family cared for my Aunt until she died. Her children, her sisters, her husband, friends all showed up. But, nothing from the Komen Foundation. But, then, that wasn’t their job, was it? No, they were busy racing for a cure.

So, after my Aunt succumbed to breast cancer (after she spent her last days unable to handle medical costs or afford basic comforts) I ran in Susan G. Komen’s Orange County Race for the Cure in her honor. I truly believed that my doing so would somehow make a difference. After all, Nancy’s goal was to “end breast cancer forever” and I was certainly behind that.

Fast forward to March of 2009 and through a routine mammogram I was diagnosed with an aggressive form of breast cancer.

I again showed up to your Orange County Race for the Cure. I was going through treatment, going through surgeries, battling infections, battling my insurance company, trying to survive without an income . . . I sought help from your organization. I sought help from you because you claimed – on your very own website – to provide financial assistance to women going through treatment. I desperately needed your help.

I called day after day after day the number that was provided on your website to apply for financial assistance. I called multiple times a day over a period of months. Each time I called there was an outgoing message saying that “no one was available at this time, please call back later”. There was NO way to leave a message. I searched your website repeatedly looking for an email address or some way of contacting the person who handles the financial assistance that your organization claimed to provide. There was nothing, no email, no point of contact, no way to leave a voice mail message. Instead, just a teaser (and a bragging statement about how you help women with the costs of their treatment).

I finally called the Orange County chapter. I explained that the New York Chapter that is the ONLY chapter that apparently has the authority to provide financial assistance to women going through treatment, did not ever answer their phone. I was transferred (after multiple calls and complaints to the OC Chapter) finally, to the director of the Orange County Chapter. I explained to her that I had not been able to reach anyone for months, that no one answers the phone in New York, that there is no way to leave a voice mail message. The OC Director immediately said, and I quote: “Yes, I know, they don’t answer their phone. Have you tried calling the Salvation Army? They can help you with your utility bills. Have you tried calling the American Cancer Society? They can help you get information on clinical trials. Have you called the Lance Armstrong Foundation? They can help you get emotional support and match you up with a survivor who has had the same kind of cancer as you.”

I was so dismayed, disappointed, crushed, heartbroken, devastated.

Meanwhile, I was undergoing Herceptin treatments and radiation and recovering from surgeries. I was unable to work. I was broke. I was lead to believe – through Komen’s own web page – that if I was in financial need that some of the nearly 400 million dollars that was raised that year could be used to help me while I was in need.

I am not one to be looking for handouts. I raised money for Komen. I have raised money for other cancer organizations. I was under the mistaken belief (as was everyone I know, all of my friends) that Komen actually helped out women who were in my position.

Not true. At least, not in my experience. And, clearly, from the OC director’s response, it is typical that no one answers the phone in the New York office – THE chapter charged with the responsibility of helping cancer patients with their treatment costs, and financial assistance. No other chapter at that time had the ability to provide financial assistance. All requests had to go through their chapter. I am certain that I made over 100 calls to that chapter – calling the number that was listed on your site for financial assistance. After the 30th call or so, it simply became a game, a “let’s see how many times I can call and not get a live person and not be able to leave a message” game. It was unbelievable.

I have shared this story with many . . . many who in the past donated to your organization who now will no longer donate to your organization because like me, they feel your organization is a fraud.

I was mislead. My family and friends were urged to donate to your organization believing that you would donate most of their donation towards either research or paying for someone’s treatment. Neither of those are true.

You say you want to “end breast cancer forever” yet, you spend about 19% of the money that you TAKE from good hearted people towards research.

We are all very aware of breast cancer. If you still think creating awareness is a necessary goal, then make it clear that the money you raise is going to awareness. But, instead, you trademark the language “for the cure”. Instead, you state that your mission is to “end breast cancer forever”. How can that be when you only spend 19% on actual research.

How can you claim to be helping women with breast cancer when the phone number that you dangled out there on your website to call for financial assistance has no one, EVER, at the other end.

I have found out through my own personal experience how little you actually do towards racing “for a cure”. My cure, if I have one at all is in spite of you. My survival, if I survive, is in spite of you. My ability to survive financially, to navigate the difficult insurance and medical bill waters, is in spite of you.

I will spend every last day of my life (however long that will be – by the way, I expect it to survive a very long time) making everyone I know aware of what you have not done. I want to believe that your organization stemmed from a desire to make positive change, to help those in need and to work towards a cure for breast cancer. But, my experience – up close and personal – has told a different story. I have received no help from your organization. When I have actually spoken to a live person at Komen, they have referred me back to the American Cancer Society, to the Salvation Army, to social workers that my hospital “might have on staff who could help me find financial resources”.

So, while I expect nothing from you, I do have this one request: STOP, please STOP asking me to donate money to you. Please stop asking me, a breast cancer patient who you ignored, who you mislead, for money. Stop asking me to buy your nearly hundred dollar bracelet every year. Stop asking me to purchase your toxic chemical containing perfume. PLEASE, please, please, just leave me alone.

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Pinktober Blues . . .

29 Oct
Cover of "Promise Me: How a Sister's Love...

So Nancy is calling this a "global movement" to "end breast cancer"? I don't think 19% to research is going to do it. I have no problem with money going to education or even to awareness, but, stop claiming you are "ending breast cancer", stop claiming you are "racing for a cure" because at your snail pace of 19% you are NOT.

This month has been rough in many ways. Partly it is because it is Pinktober. And partly it is because I just have not felt well. I have had a headache for 6 weeks now. That is nothing compared to what some of my friends have to endure. So, I feel weird even mentioning it. But, with those headaches I have the ever present fear of a recurrence. That is the lot for those of us who are lucky enough to be NED (no evidence of disease) . . . aches and pains take on a whole new possibility.

My headaches are getting under control a bit and I have actually had some breaks from it as well as just a lower intensity. So that is definitely an improvement.

I wonder though if my headaches are from Pinktober. I am serious. I really think it is . . . if not Pinktober, then Komen.

You see, it is difficult to be surrounded in a sea of pink, to be constantly asked if you want to make a donation “to breast cancer” whenever you are in a check out stand at a grocery store. It is difficult when you know that all of this pink hoopla results in very little of the purchase price going towards research, towards a cure. And, sometimes none of it goes to research, sometimes it simply goes to “awareness”. Well, that means it goes towards pink packaging.

I AM truly suffering from pink fatigue. I have been angry and depressed about it.

Please understand that if I thought any of this sea of pink would improve survival rates for breast cancer I would feel very differently about it. But, in all the years that Komen has been taking money in the name of “racing for a cure” the survival rates for breast cancer are largely unchanged. Those of us who are diagnosed with aggressive forms of breast cancer (even when detected early) do not have a great prognosis of long term survival. Overall survival rates are pretty much the same as twenty years ago. Early detection is NOT a cure.

So I am angry. I am angry that Komen, an organization whose mission is to “end breast cancer forever” only spends about 19% of the nearly 400 million they raise each year on research.

And, this year Komen has sunk to a new low with “Promise Me”, a perfume commissioned by Susan G. Komen for the Cure. Komen’s Promise Me contains chemicals not listed in the ingredients that are regulated as toxic and hazardous. But, because the FDA does not regulate perfume, there is no requirement to list these chemicals on the label. And, of the approximately $60 purchase price, only $1.31 goes to research . . . this after subjecting anyone who wears it to chemicals that are known to cause disease. Pretty sick, right?

So, when I stand in line at the grocery store and the clerk innocently asks me if I want to donate “for the cure” I literally feel queasy. For some reason I see myself lying on a table going through the surgery I had to remove both of my breasts . . . I actually picture that in my head. I donated those parts of my body for breast cancer, for survival, so that I could have the chance to still be here today. That is what I think about when I am asked to donate for “the cure”.

I am grateful to be alive. I am grateful for the RESEARCH that lead to Herceptin . . . without that drug I would surely be dead. I am so, incredibly grateful.

But, we can have more than Herceptin, we could have a cure. So, while I am grateful I am also very angry. Angry that an organization like Komen who raises the lion’s share of money in the name of a cure only donates 19% of that money to research.

I am angry that good people, with the best of intentions are taken advantage of, are lead to believe that they are really making a difference when they buy something that has a Komen ribbon on it.

I am angry.

I am sad that I have friends who will not survive cancer because we are wasting our time with pink hoopla instead of real money for real cures. And I fear that I too will succumb one day to this disease . . . that there will not be a cure in time.

Some of you know that I play standup bass and sing. I am in a small blues band. Tonight I was asked to fill in for a bass player in another band because that bass player’s mother passed away today . . . from cancer.

I immediately agreed to fill in. I’ve never sat in with this band before, but, hopefully I will be able to keep up with them.

I wonder if some day someone will be calling for a bass player to fill in for me . . .

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Some pictures from this summer and last summer . . . what a difference a year makes :)

27 Aug

Me and my cousin Suzanne . . . two weeks ago at my nephew's 2nd birthday party

My parents, love this photo, they just celebrated their 53rd wedding anniversary!

Two weeks ago, celebrating my nephew's 2nd birthday!

Playing with my blues group a few weeks ago.

Playing with "Huge Blues" at Bistro 400, July 30, 2010

July 2009, almost done with chemo

Goofing around with my brother and my nephew, Bowers Museum, July 2009

Dana Point, a break from chemo to hear some music with my cousins, June 2009

I felt like crab . . . thank you David 🙂 July 2009

Dana Point concert last summer

Early on in chemo, last spring, sometime in April 2009 . . . My brother Steve shaved his head . . . awe 🙂

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"One of the most adventurous things left us is to go to bed. For no one can lay a hand on our dreams." E. V. Lucas

10 Nov

Tonight I will dream that there is no cancer left in my body.

I had my first radiation treatment today. Although it was somewhat intimidating – the machinery, the noises associated with the machine doing it’s job etc – it did not seem all that bad.

Then, a few hours later my skin began to sting in places and then an hour or so later, it simply just began to burn. It is not a bad burning sensation. But, it concerns me because I was told I would probably not have any reactions until the second week.

So it went from, “Woo-hoo, one down, twenty-seven to go” (I will have a total of 28 radiation treatments) to “Hmmmm. Not so sure about this.”

But, I will do it, I have to do it and I have to get past it. And, maybe it will be easier after the first week or first few days, not worse like they say. And, they do say that everyone is different – some women experience a lot of redness and pain and some do not. Here’s to being in the group that does not. 🙂

All I know is that I am completely exhausted  (fell asleep today in while waiting for my oncologist – granted he kept me waiting a long time). But,the exhaustion has to be from only getting two hours of sleep last night. I doubt that it was the effect of one radiation treatment.

Well, it is late and I need to get some sleep. Another treatment tomorrow and every week day after that until December 18th. Assuming all goes well – and I am going to assume that all WILL go well.

While the radiation treatment is causing me some anxiety (again, more of the unknown), I am also very glad to have made it through so much – the chemo, the surgery. That makes me feel pretty good to have that behind me.

Please keep prayers and positive thoughts coming my way. I greatly appreciate it.

Much love,

Lisa

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"Huge Blues" . . . the band, not my state of mind :)

11 Jul

Huge Blues BaldThis is a picture of our blues band, “Huge Blues”. From left to right: Tim lewis – vocals and guitar, Brett Caplinger – harmonica, Paul Hughes – guitar, center, me – stand up bass and vocals.  The whole band is bald now 🙂  Paul shaved his head so we would all be bald 🙂 Thank you for doing that Paul, very sweet. My brother Steve also shaved his head. He did it on the same day that I did. He lives in San Diego and sent me a picture from his cell phone as soon as he had done it. I will post a picture of the two of us up here soon.

Huge Blues is playing at the Orange County Fair tomorrow at 3:15 on the main stage. It should be fun. Hopefully it will not be too hot. The heat is not my friend these days. But, it is a short gig, so it should be fine.

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