A Little Light

by Jen(ster)

Yesterday’s news was a blow for most, if not all, of us. Cancer has taken another mother away from her children and it hurts. I don’t know about the other writers here, but I’m guessing it shook them up just as it did me.  Just like the others who are gone, every post or comment by her causes a hitch in my breath.

Shortly after I read the news about RivkA I received a message from Cindy’s sister. (I wrote about Cindy HERE.)  It didn’t say much, but what it did say was huge. Only one lymph node out of 14 was cancerous.

While I mourn for RivkA’s family, I rejoice for Cindy’s. Her first battle with cancer was an extremely tough fight for her and this time might just be a little easier.

RivkA has died.

Our old friend RivkA has passed away.  I would write lovely words here for her, but right now I am just so ANGRY that cancer has taken another good woman from the world.  

In June 2009, RivkA gave a talk on Coping With Adversity; she recently asked that it be reposted on her blog and shared again with the world.  In her honor, we encourage you to view the link and honor the memory of a woman who fought the good fight.

Please daven, pray, or whatever you do in your faith tradition for the memory of a good woman, and for the healing of her family.

Real Breast Cancer Awareness Part II

Real Breast Cancer Awareness Part II

This was posted in my personal blog ‘Get Out Gertrude’ on the 17th October as one of a four part series on my thoughts on real breast cancer awareness

How do Breast Cancer fighters / survivors feel?

So much pink in October is also quite hard to for Breast cancer survivors  to handle at times.  While those that have finished treatment and have a good prognosis for a complete ‘cure’ either embrace it or ignore it, for those with a more complicated relationship with breast cancer  it is quite hard to know how to handle all the reminders.

My friend TLA sums it up this way  “I know for myself, I wish I could be on an island the month of Oct and not see anyone. People who wouldn’t even look at me when I was in treatment, let alone do anything to help me, are awash in pink. They care! Really? See I am a care in action person. Now I am the first to say that some care is invisible, like the men and women who told me I was in their daily rosary devotions, something not so visible, but very important. Some care is more visible. But my friends point is that just sticking a ribbon on it, when that is all that is done, only hurts women as it has become a feel good, meaningless symbol of caring.”

I had just been told the cancer had come back at the beginning of  October 2009 and I had to make a conscious decision on how I was going to deal with it.  I chose to take part in some fundraising activities but at the same time it was hard to deal with the advertisements on TV, the pink ribbon sales pitches,  and all the other constant reminders that I had breast cancer. 

Even some of the breast cancer charities themselves get it wrong sometimes.  The  Breast Cancer Research Trust have had two advertising campaigns in recent years that I took offense at.  While I admire their commitment to finding a cure their “Seriously, breast cancer’s not a big deal” in June 2009 really touched a nerve with me and even when they add the tag line “because we are going to find a cure in 10 years “  it didn’t really mollify me.  And then their replacement campaign still pushing the 10 year cure wasn’t much better

You see for people like me, who’s already had one recurrence, or my other friends with recurrent or metastatic breast cancer especially IBC we don’t even know whether we are going to be around in 10 years time   and they also don’t mention that for aggressive breast cancer the ‘cure’ will still involve such life and body altering things as mastectomies and chemotherapy.  No big deal – I think not. 

Also they said such things as ‘will find a cure  for 90% of all breast cancers ‘ – ok IBC is less than 5% of breast cancers – do they mean they will find a cure for that or not? 

There’s also the ladies that are picked to be the face of breast cancer appeals -always success stories, always so positive about their successful breast cancer journeys so that when people like ‘justenjoyhim’ and ‘whymommy’ try to say something different they are shot down as being cranky or ungrateful when in reality they are dealing with the very real emotions that dealing with a recurrence scare or actual recurrence can bring.

I guess being real isnt a good marketing ploy (yes -I’m being facetious)

I’m usually way more positive than this but its a fact that Breast Cancer (especially if its IBC) is not all cutesy or sexy or  ’happy happy joy joy ‘ as some well meaning fundraisers would portray it. As I was saying to my uni friend AW most of the time I’m positive and try to ignore or play down the more dire possiblities that this disease can mean for me personally but sometimes things happen that make it slap me in the face.

I’m not saying that  Breast Cancer Awareness Month is necessarily a bad thing I’m just saying lets be a little more real with what it actually means

For me personally its turning up to the hospital every three weeks for the foreseeable future to have IV herceptin in the hopes that it will keep me in remission.  And although I was  back  in remission May 2010 I have already had one scare and scans to check recurrence or metastasis – they came back clear - but they want to scan me again in December ‘just to make sure’.  Its having an echocardiogram every few months (next one due the week of my university exams) to make sure that the herceptin that is my ‘cure’ isn’t giving me heart failure.

Its ‘just enjoy him’ worrying about whether elevated tumour markers mean a recurrence, its ‘whymommy’ being too sick and tired from her chemo treatment from her recurrence to play with her young children.

Its my friends from Sweet Louise who are all dealing with metastatic cancer.

And especially its my IBC sisters Angela, Roxanne, and Malu who all lost their lives to this disease in the last week

For all the success stories there are still people suffering and dying from this disease and each one is one too many.

If you see a pink ribbon, remember them – I know I will.

Parts I, III, IV can be found on my blog (warning part IV has pictures of IBC breast and mastectomy scars)

Be… Aware…ness

by marybeth

This month… October… the month we used to think of Fall Colors but now all we see is pink… or for some all that pink has made them see red…is about awareness… Breast Cancer awareness…

I have to admit… I have been educated by my fellow “Mothers with Cancer” on this subject. I, like most before I was diagnosed and even after did not realize or really think to realize “how much” money was actually going to the cause. I do not think we can blame the consumers… “someone” is telling us to do a good thing by buying a certain product.  Then there is that “business”… “making money thing” again… Hey if we put a pink ribbon on it we can make raise the price… sell more and give a pittance away to the cause. So I want to thank those that have educated me on exactly what is going on.

But, I felt I wanted to post something on awareness too… I have been trying to think of how I could do that. So I asked my kids… what would they want people to be aware of when it comes to breast cancer?

My son, who was a few days before turning 6 when I was diagnosed gave me the following. He is 10 now. We were in the car and when he started to talk… his whole facial expression changed:

“It was hard”… what part was hard?
“The whole thing was hard”.
“You have to trust that the doctors are doing the best they can to save your Mom”.
“It is hard when they have to go away for chemo or to the hospital for surgery. But sometimes they have to go away … To come back.”
“I did not like when adults would ask me “How is your Mom doing?” because if I was not thinking about you and the cancer… I would think about it again and it would make me sad.”
“I did like being able to go to my friends… because if I was sad …they would help to cheer me up.”

Then he was quiet for a bit… which if you know him is not really possible unless he is playing a video game or reading…. “The devil got close on that one.”

I asked the daughter the same question. She was almost 13 when I was diagnosed and is now 17.

“I saw the pink ribbon differently back then… it did not mean hope… and it was not pretty.”
“I felt like people were supporting the cause but not really supporting the cause… people would say; ”I bought this pink thing and I am supporting your Mom. But they were not there seeing what you were going through.”
“I think the only stuff that should be pink is the stuff that is sold by the breast cancer organizations.”

“I think the ribbon really should be wings…Mothers are the emotional protectors of the family… they wrap their wings around the kids and family to keep us emotionally safe.”

“I had so many mixed feelings… I wanted to be home but not be involved… it was so hard to see your Mom fall asleep in the middle of a sentence…. so tired and sick. Yet I wanted to be away so I did not have to say good-bye.”

The following are some of the things that I would like to make people aware of:

It was not helpful when people would tell me…“so and so is okay and this other friend is okay so I you will be too.”

I would like people to be aware that if and when the survivor recovers… the family can have post traumatic stress… when I get a cold… it is not like when the Mom gets sick in other homes. It takes everyone back to the battle…. Immediately…

I would like teachers and friends to be aware that the kids are going through or have gone through hell. They each may show it in different ways. Even after Mom is better and her hair and energy is back, the effects may linger for years. They may have lost some emotional growth time… they made have a harder time adjusting to changes, their anxiety may be off the charts. They have been forced to see and deal with things that they emotionally should not have to at their ages.

Breast Cancer… any cancer or major sickness for that matter, forever changes you… not just the survivor but every one in the family.

As my son said yesterday… “Life is hard Mom”…”I want to go back to being 4… Everything was so easy back then.”

cross-posted at marybethvolpini

 

October/Pinktober thoughts and feelings, by Judy

Well, the month of October/Pinktober is almost over, and I’ve survived it. I suppose it would have been an easier month if I didn’t spend a good part of it wondering if those “slightly high tumor level markers” were a fluke or really mean a possible recurrence. I still don’t know, and was told that the earliest I should call is tomorrow, hoping that the test has gone through all the necessary steps and I get my results.

Waiting. It’s hard.

I come towards the end of the month with very mixed feelings about Pinktober, and if I ever get really into the book I have checked out, Pink Ribbons, Inc., I might be able to get a better handle on what I think and feel about all of this pink.

I realize that most of the pink that happens around this month, National Breast Cancer Awareness Month (NBCAM), is to spread awareness about breast cancer, or more correctly, breast cancers, as there is more than one kind of breast cancer. On the other hand, even the beginnings of making October NBCAM were wrought with disconnectedness and mixed messages if you look past the obvious goal of breast cancer awareness.

National Breast Cancer Awareness Month (NBCAM), founded in 1985 by Zeneca (now AstraZeneca), a multinational pharmaceutical corporation and then subsidiary of Imperial Chemical Industries, is possibly the most highly visible and familiar manifestation of this alliance. AstraZeneca is the manufacturer of tamoxifen, the best-selling breast cancer drug, and until corporate reorganization in 2000 was under the auspices of Imperial Chemical, a leading producer of the carcinogenic herbicide acetochlor, as well as numerous chlorine and petroleum-based products that have been linked to breast cancer. Source: Pink Ribbons, Inc., pages xx-xxi

So even the beginning of trying to make breast cancer a cause is problematic when you look in-depth at its history.

Is does seem to be THE cause, the cause that grass roots organizations, charities, and companies, can all use. It’s safe. It’s not like AIDS which is still associated with gay and/or unprotected sex or tainted needles. It’s not like lung cancer which people attribute to smoking — and while smoking is a big cause of lung cancer, some people contract lung cancer without ever having smoked at all. Breasts are certainly easier to talk about than prostates, testicles, livers, colons, rectums, kidneys, blood, and so many other types of cancer that don’t get their fair due. The leading cause of death to cancer is actually lung cancer. Colon and rectal cancer is second, followed by breast cancer in third place. Cancer (of all kinds) is the second leading cause of death in women; heart disease is the first.

Still, it’s hard to complain about people becoming aware of breast cancer. It does make me sound like a Pinktober b*tch.

I don’t want to be that person. I have a real disconnect myself with Pinktober, maybe especially this month as I’m spending three weeks overall waiting for blood test results that will tell me if I may have a recurrence of my cancer, if my miracles have run out . . . at least for the time being.

I think in some ways the pink ribbon movement has taken on a life of it’s own, and it can be difficult for someone like me to be bombarded by pink pink pink all month long, well knowing that some companies give money to breast cancer organizations, some give very little money but use Pinktober mainly as a marketing device, and there are still others that make merchandise pink “to raise awareness” and never have any intention of raising money for the cause.

That’s why Think Before You Pink is such a good organization — it alerts people about what to think about before buying a pink/pink ribbon product. Perhaps more important, it educates people about pinkwashing, pink products that actually do more harm than good in the fight against breast cancer.

I really don’t want to be a Pinktober b*tch, though I think I’ve held that position very well this month. It’s been a difficult month for me, though, so any slack cut me is much appreciated. I do appreciate those who are trying to get the message across in whatever way — friends who have made their Facebook photos pink, others who have waved (or held high) the pink ribbon, sports teams who have worn pink in tribute to those suffering with breast cancer, and many others who have only the best intentions with using pink to get the word out.

I do take issue, however, with companies who use it as a marketing tool . . . and many do. I like the companies who give 100% of their profits from an item, like Ford does with Warriors in Pink. That is something I can get behind.

Other than that, you can pink things up for awareness, but I also strongly urge people to simply donate money to a breast cancer cause, particularly one that is involved in researching the disease, not simply bringing awareness to the disease.

As for me? — have I put my money where my mouth/fingers are? Yes, I actually have, but I’m not here to brag about how much money I’ve donated to the cause. I’m simply hoping that pink goes beyond a color and dollars get donated to helping treat and most importantly, find a cure.

And while we’re at it, let’s support research for other cancers as well.
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Cross-posted to Just Enjoy Him.