My stages of awareness

Awareness comes with a level of burden. That’s why I once avoided it. But sometimes avoiding awareness can delay progress, especially when it comes to cancer.

I’ve thought of my different stages of awareness — from not having gone through the experience of cancer or knowing someone who has been diagnosed, to losing family members to the disease, to then being diagnosed myself. Each stage was sort of forced into my life. No one wants to deal with cancer.

I knew my great-grandmother had died of breast cancer at the age of 49, but no one else in my family had been diagnosed with breast cancer since. I was not directly exposed to the disease and no one in my family spoke about it.

I visited my doctors regularly because I was a bit of a hypochondriac. Doctors didn’t talk to me about cancer because my great-grandmother was three generations behind me, not close enough for me to worry about it (a myth!). But I also didn’t care much about educating myself on cancer, even though I knew it existed and that it could happen to anyone. Maybe I thought it couldn’t happen to me.

As I got older, others in my family started to get diagnosed with breast and ovarian cancers. I thought cancer was a death sentence, especially after losing my grandmother so quickly to ovarian cancer. She was living in the Dominican Republic at the time (1990’s) with limited resources and was immediately diagnosed as terminal. This created a fear in me which forced me to be more aware of cancer.

Then my great-aunt (my grandmother’s sister) was diagnosed with breast cancer. I still thought, “wait, this is a 2nd generation behind me so I should not worry.” My great-aunt died at 59 from metastatic breast cancer. I thought breast cancer was only one disease and so there was no reason for me to learn the details – it would have been too painful for me. I was scared enough after witnessing what she went through.

Later, I did some Walks, including the Revlon Walk which “supports all women’s cancers,” I thought. I even put together teams to raise awareness and money for the cause. However, I still did not research the organizations I was supporting. It felt easier to follow what others were doing because that was the type of awareness society was comfortable with. That I was comfortable with. During my walk I remember thinking, “I am walking for you,” without realizing cancer could hit me too.

Then came my time to get diagnosed with breast cancer. Shit just got serious. First thing I thought was, “I am going to die,” because no one else in my family had survived. I thought I was next. I moved fast because I believed that would make a huge difference. Reached out to Dr. Google every day to interpret my pathology report (bad idea). However, I did not research about metastatic breast cancer because that wasn’t related to my case. I mean, my cancer was caught early, plus I was negative for the BRCA mutations. I chose not to overwhelm myself with more information than I needed to deal with the situation at hand.

I joined an online forum during my treatments — a group of over 200 ladies and a few men. I knew their stories. Some were very similar to mine. Some of them eventually faced stage 4, and then died. I was exposed to a lot of information my doctors didn’t tell me — how sometimes tests aren’t accurate, or how having clear lymph nodes doesn’t mean my cancer won’t spread, for example. This pushed me to learn more about my disease. I realized then that the story of my breast cancer was only half told. It was not fun to learn all the facts about my disease. It added a burden of awareness I didn’t have before, but one that was important for me to know.

Since then, my other great-aunt was diagnosed with breast cancer, and my great-uncle was diagnosed with prostate cancer. Next, my aunt was diagnosed with leukemia. Then, my dear cousin Glenny was diagnosed with stage 4 breast cancer this year, which took her life. All on my grandmother’s side of the family. Now I am eager to know everything.

So, I’ve come full-circle on awareness.

Educating yourself can make a huge difference on what decisions you make about your health. We often don’t advocate for things we think will never happen to us. We want to believe we will never face cancer, but even if we don’t, we can’t forget our family, our friends, and other women and men who are dying from this disease. We can’t deny awareness adds a burden to one’s life but sometimes that burden is necessary in order to achieve progress.

I now realize we are all in this together, regardless of our current health status and regardless of our cancer stage.

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in Awareness, c World, Reflections. Bookmark the permalink.

27 Responses to My stages of awareness

  1. sorry that cancer hit many loved ones in your family…. and you are right, we are all in this together. best

  2. Carrie says:

    Awareness is an interesting thing. There’s definitely the awareness we get from family members who have or had cancer. Then there is the awareness that we have. Then there is the awareness I think some of our medical team wants us to have. I love my medical team because I think, for the most part, they like that I am educating myself and therefore being my own advocate but I also see that this works against them as well. There can be a lot of questions and a lot of pushback. I see awareness as a good thing.

    • thesmallc says:

      Carrie, I agree with you it is better to have some level of awareness. The way you described it makes a lot of sense — there are different types of awareness. Each stage was very different for me. It’s a good thing you educate yourself, it allows you to be part of the decision-making process, and it somewhat gives you some level of control. It does for me. xx

  3. Rebecca, I’m so sorry you lost your cousin Glenny. How awful. Yes, awareness is a difficult burden but knowledge usually means empowerment. Like you, I didn’t think it would get me … until it did.

  4. Poly Batista says:

    Es cierto se arrastra una carga generacional que te trae como componente declarar sanidad en el nombre de Dios y cuidarse con chequeos periódicos para anteseder cualquier evento.

  5. As I’m sure you know, I struggle greatly with the concept of awareness–to the point I think the word is now meaningless in general. There ARE different levels as you point out here. For example I ran into a former co-worker the other day, whose own brother and father had each had different kinds of cancer. I’d forgotten that until we began talking about how I’d just had my “5 year” mark, and she commented, yeah, but it will always be on your mind. I was so relieved–here was a friend from before my cancer era, who just “got it”, without me having to explain. She offered no platitudes. It was such a comfort!
    I’ve been mulling over what constitutes awareness-just how much can I expect the general public (people with little to no cancer experience) to be aware of. Thanks for giving me more to chew on!

    • thesmallc says:

      It is always such a pleasant experience to have someone, who hasn’t walked your path, empathize with you. When it comes to cancer “awareness,” I find that we just go as far as how directly involved we are with it, if that makes sense. But eventually a shift has to happen. I am sure there’s more for me to know. xx

  6. nancyspoint says:

    Hi Rebecca,
    I hate how cancer has impacted your life and your family’s lives so much. I am so sorry. You are really onto something in this post. We all evolve as we learn more, and not just regarding cancer stuff, of course. I know I have certainly evolved too. I used to think so differently about breast cancer… Anyway, this another thought-provoking read. Thank you.

    • thesmallc says:

      You described the experience of going through different stages of “awareness” so perfectly — we do evolve. And this also applies to everything else in life.
      Thank you for your kind words about my family, Nancy. xx

  7. Kimberly says:

    Thank you for this great post.

  8. Mandi says:

    I am sorry you have lost so many! I hate cancer. 😦 It hasn’t been a common disease in my family, still the oddest thing that I was diagnosed at 30. Maybe someday they will figure it all out. Hope you are doing well. 🙂

    • thesmallc says:

      Hi Mandi. cancer def. sucks! I can’t stand that we both got it in our 30’s. I hope the day when they figure it all out comes soon. I am just dealing with some anxiety at the moment. I have some tests coming up. I think of you often. You hang in there too! xo

  9. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  10. scottx5 says:

    Rebecca, thanks for this and hope your tests show your anxiety the way out of your life for a while. Although, I guess worry is part of the awareness package and can’t be entirely escaped if we lead a real life.

    I think some cancer care givers could use some awareness too. I know they carry a load from witnessing a lot of sadness but I think they belittle the patient’s experience when attempting to smooth over the anxiety. I just received an answer to why some things went wrong with my chemo that caused me a lot unnecessary sickness and the reply was a read-back-to-me version of the plan I was told before treatment.

    It isn’t clear if the ship’s captain actually notice we sank half way through the trip–I did. But really, not mentioning it makes me worry about what else they missed. I think what’s happening here is an attempt to project an aura of control as a means of reassuring me that nothing could go amiss under the care of his clinic. I really expected a more adult answer.

    Have you experienced this “let’s pretend all was swell” game from your doctors?

    • thesmallc says:

      Hi Scott! I just experienced that yesterday with my mammogram followup. I expressed my concerns about my quality of life as well as my constant sadness to see so many women struggle with the disease (specifically about a dear friend who is now stage 4). Right away I was told not to worry. That it isn’t my case. Although I understand her intention was to make me feel more at ease–and she always tries, that didn’t help me because I felt my feelings were been minimized. Instead, I was advised to see a counselor. I understand it isn’t their responsibility to provide therapy.

      She wrote down some notes about my collateral damage and then told me “I am doing well.” I believe we get these reactions from (some) oncology doctors because their main goal is to keep us alive (as long as we are breathing, we’re doing OK). If I bring up an issue about a side effect to my PCP, he would probably address it with me because it is what he does. I feel (some) oncologists only worry about keeping us alive regardless of how our quality of life is affected (at least to some extent). But to be fair, I am not sure there is much they can really do. These treatments are all we have. It is frustrating. I am sorry you aren’t getting the answers you are looking for. And I totally agree the medical community needs some awareness. They also need to pay more attention.

  11. scottx5 says:

    Rebecca, agree with the keeping us alive part but want to reply at my blog.

  12. Pingback: Be here, maybe | Scottx5's Blog

  13. scottx5 says:

    Also this: check the site as they do replay the program but it takes a while to get recording posted:
    Tracy Chapman
    U.S. singer and musician Tracy Chapman will soon release a greatest hits album. (Martial Trezzini/Associated Press)

    http://www.cbc.ca/radio/q/tracy-chapman-1.3216381

    On the occasion of her greatest hits album, Shad spends time with the quietly powerful singer-songwriter Tracy Chapman. Her hit songs — including Talkin’ Bout a Revolution, Fast Car, and Give Me One Reason — have not aged over her nearly 30 years of making music.

    • thesmallc says:

      Thank you Scott!! I follow her on Facebook and I was happy to see she has made a comeback. Love her poetic lyrics. I’ll be sure to get her greatest hits album. “Fast Car” is one of my favorites. Also “baby can I hold you” – nice lyrics. A lot of her songs are great.

  14. Poly says:

    La vida trae pruebas en todo tiempo y lugar.

  15. bethgainer says:

    Rebecca, I’m so sorry that you and your family members got cancer. It is such a devastating disease, as you full well know. I think all of us evolve in our thinking. Right after treatment ended, I participated in a breast cancer walk, eyes filling with gratitude to Susan G. Komen. Now I look back and can’t believe I supported such a cause. I used to believe that early detection meant I was cured, but I know better now. Facing these realities is very unpleasant to say the least, but I’d rather face the truth than live in an illusion. Thank you for an excellent post.

    • thesmallc says:

      Beth, I agree with you. It is better to face the truth than not to. It helps me be prepared although it is so heavy at times. It’s OK that you participated in a Walk. You did it with the best intentions and that’s what counts, plus you didn’t know. Neither did I. It is bad when an organization such as Komen DOES know and still refuses to focus on what’s important for us patients. The more we talk about what we know, the better. As always, thank you for your support! xx

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