A couple of pet peeves . . .

6 Oct

Pet peeve number one: Breast cancer fundraisers that use alcohol to raise money (alcohol intake increases a woman’s chance of developing breast cancer).

Pet peeve number two: The terms your “new normal” (These words are used all over the place now – support groups, articles – it seems to have been coined in the past several months and it is every where now as the way to describe how you should expect to feel after breast cancer . . . your “new normal”).

Maybe each of these deserves a separate post, I don’t know. But, here goes with pet peeve number one:

Breast Cancer Fundraisers That Use Alcohol As A Means To Raise Money:

Last summer I was invited to a fundraiser for a breast cancer organization. It was a tequila tasting. A $50.00 ticket gained each person entry into the fundraiser and included many tastings of different tequilas. Apart from the booze aspect – which did not appeal to me at all – the event sounded like fun . . . music at an outdoor event where there would be many people gathered all in support of a good cause. But, the whole idea of an event that was intended to raise money for breast cancer that is centered around drinking alcohol troubled me.

Since the tequila tasting fundraiser, I have been invited to several breast cancer fundraisers that use alcohol as the selling point . . . wine tasting events etc.

A woman’s risk of getting breast cancer is increased with alcohol intake. The more drinks per week the more the risk increases. I have friends who are breast cancer survivors who are very active in raising both awareness and funds for breast cancer research. They are amazing women. Recently one of these women invited me to a wine tasting to raise money for a breast cancer walk. I am sure it would be a fun evening. But, the idea of gathering with fellow cancer survivors and downing drinks, knowing that the alcohol is not good for us, really does not appeal at all.

There is no doubt about the connection between alcohol intake and increasing the risk of breast cancer. So, I have a problem with fundraisers that use alcohol as the focus for the fundraising event i.e., “Wine for the Cure” . . . it just bothers me.

I have never been a big drinker. For several years I was a vegetarian and did not drink any alcohol. I did this with the specific goal of reducing my breast cancer risk (a little ironic, I guess). I have since found out that certain aspects of my vegetarian diet may have actually contributed to increasing my risk of getting breast cancer . . . now that is really ironic . . . but, that topic definitely deserves a separate post.

Pet Peeve Number Two: Your “New Normal”:

Okay, I am going to say it: I really, really resent the terms “new normal”.  Don’t get me wrong, I know that things will not ever be the same again post cancer. But, it seems that recently the words “new normal” are cropping up everywhere as the answer for what to expect after treatment.

I know that some women never fully regain their former energy level post cancer treatment (chemo is a real bitch). And, having gone through chemo, Herceptin and radiation, I can say that I have never felt more drained of energy as I did during and immediately post treatment.  And, having had multiple surgeries that took away body parts, feeling and left multiple scars, I can say with confidence that whatever I am returning to is not entirely normal.

But, I really resent this “new normal” thing.

I mostly resent it because it is used as the answer to so much now that is survivorship related (survivorship being that period of time post treatment).

Here are some of the questions and answers I have heard/read recently:

When will my blood counts return to normal? They might not ever return to normal . . . you may find that you hover below normal counts for the rest of your life . . . that will be your “new normal”.

How long before I get my energy level back post chemo and radiation? This varies from woman to woman and for some women it isn’t about getting back to their pre-cancer energy levels, but, instead about finding and accepting their “new normal”.

When will I get over my chemo-brain? For some it can take a year or more and many women complain of long-term memory problems and mental confusion that lasts for years and years. Many women cope with this by making lists and posting reminders around the house and taking on less responsibilities at home and work . . . adjusting to their “new normal”.

Okay, so those are some of the examples . . .

It suddenly occurs to me right now, as I am writing, what really bothers me about the terms. It is that instead of offering something proactive to address the problems that many women face post breast cancer (and that cancer patients in general experience post cancer) we are told to simply accept this new way of life.

For example, instead of telling women after breast cancer that memory problems and an inability to focus post chemo may mean that you have to take on less activities . . . how about providing a solution to the memory loss and focus problems?

What about treatment for that? I don’t mean more medication, I mean working through puzzles perhaps to rebuild synapses in the brain (there is proof that learning new things helps rebuild pathways in the brain).  These types of things are used all of the time to treat a person who has suffered a brain injury. Computer programs have been developed to help treat dementia (research studies confirm that these programs are effective). Yet I have never heard it suggested that anything be done to help rebuild/repair the chemo brain.

I know that my life will never be the same post cancer. My life forever changed the day I was diagnosed with breast cancer. But, there is something hopeless sounding to me about “finding your new normal”.  Maybe I am unrealistic in my expectations for my survivorship. But, I refuse to accept that my brain will not make a full recovery from the effects of chemo. I refuse to accept that I will not be able to do as much post cancer as before cancer. I refuse to accept that I will not have a satisfying sex life after cancer, that I will gain a bunch of weight from taking Tamoxifen, I refuse to accept that I will not be attractive post mastectomy and reconstruction, that I will have a poor body image. (This is just some of the crap that breast cancer patients are told . . . well, I think it is crap :))

As a cancer patient and now survivor (so I am told) I feel like so much is foisted upon me that I am supposed to just take, accept.

I find this to be very defeating. And I guess I just refuse to accept it all. I think it is a real cop-out for doctors and counselors to use the terms “new normal”. Instead, I think these care providers should be focused on providing care . . . real solutions to these problems instead of preaching the “new normal” and passing out anti-depressants.

Just my thoughts on it.

Love and peace,

Lisa

PS (Yeah, because this post really needs to be longer :)) I don’t know if you can tell, but, I am a little pissy today. I am angry right now.  I know exactly why . . . it is the drains that I have in my body post-op. These are really bothersome to me. I will likely get all three remaining drains out this Thursday when I return for my first post-op appointment up at Cedars Sinai.

I know I will feel better then. But, right now I am pretty fed up with this whole cancer crap. I am tired of feeling the physical pains of it all. And, yes, I know I have been writing this past week about how grateful I am that I am in so much less pain with this most recent surgery than I was after past surgeries.

I am feeling less pain and I am grateful for that. But, I am tired of not being able to sleep comfortably. It has been more than a year now that I have not been able to sleep on my side or stomach . . . not since the mastectomy. I am so tired of not being able to get a night’s sleep. It has made me kind of cranky today.

2 Responses to “A couple of pet peeves . . .”

  1. Sandy October 6, 2010 at 11:50 AM #

    AMEN! I agree with both of your pet peeves. As to the “new normal,” this same attitude has described geriatric care in this country for decades. “You’re aging now, this is ‘normal.'” Well, guess what? It doesn’t have to BE normal! New studies show that the memory loss that “just goes along with” old age – doesn’t! Memory loss and senility are abnormal for everyone, not normal for some! Grrr…! (Can you tell I have aging relatives whom I love?)

    Anyway, that thinking has got to change across the board. It’s laziness, pure and simple. Good for you for not accepting it! After my car accident in 1988, I was offered a handicapped parking placard – which I refused. I told my doctor that if I accepted it, I would never get any better. The specialist told me I wasn’t going to get any better, anyway. To heck with that! Since that accident, I learned to ski and rollerblade, and have run 5 half-marathons. Pshaw!

    Sorry for jumping on the bandwagon, here. I just want to you know that I support you continuing to improve your health. Don’t settle. Get well. Be happy. Be FIERCE! 🙂

    Much love,
    Sandy

  2. cancerfree2b October 6, 2010 at 4:39 PM #

    Thank you Sandy 🙂

    I agree, it should not be considered normal and expected that a person should experience memory loss or dementia as a part of aging. And good for you for not accepting that you would not get better. Wow, five half marathons?!!! I didn’t know you had done so many, that is quite impressive! Good for you!

    Thank you for your thoughtful reply. And, thank you – in advance – for taking me up to Cedars Sinai tomorrow for my post-op appointment. I really appreciate it.

    I look forward to seeing you tomorrow!

    Much love,
    Lisa

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