Thursday, July 8, 2010

Happy Anniversary Baby!


Truckin' like the doodah man
Once told me "Gotta play your hand
Sometimes the cards ain't worth a dime
If you don't lay them down"

Sometimes the lights all shining on me
Other times I can barely see
Lately it occurs to me
What a long strange trip it's been

One year ago today I was diagnosed with Invasive Lobular Carcinoma - Stage III (in truth the staging came in August after the mastectomy). One year of "survivorship" under my belt...only four to nine more years to surpass the prognosis! (How's that for a point spread!)

What a wild ride it has been these last 12 months. It is with utter amazement that I reflect back on the day my mortality was handed to me, with a soundtrack courtesy of YES reverberating through me. That day was a lifetime ago.

Today, if I am lucky, the wild ride will continue. The landscape may change, however.

What in the world ever became of sweet Jane?
She lost her sparkle you know she isn't the same
Living on reds and vitamin C and cocaine
All her friends can say is ain't it a shame

One of the realities that I discovered along this road is, that when facing your mortality it is not about "battling" a foe or trying to regain what was "normal" before. Rather, the ride is about developing a "new reality" that allows me to live with a chronic disease.

I cannot say that I have succeeded in my new reality. I don't know how "success" should be defined. What I can say is, that I have embraced the road I am on. It is a road beset with rabbit holes. It is also a road that is shrouded with many uncertainties. Yet, there can be clarity even in the darkness. At all times on the road I am cognizant of my long term objective -- the legacy, if you will. This knowledge is what helps keep me from getting too distracted by the "tea parties"* of Vitamin C & D and Calcium Glucarate.

So today, I take a breath. I embrace that I've been on the road for a year. And I note that I have more than earned the status of "survivor."

* No political connotation intended what-so-ever!


  1. just approaching my 2nd anniversary of survivorship of Stage IIA invasive lobular cancer. just had my latest 3 month blood work up; ever notice how your life seems to be divided into three month increments? hope all will be well for you and that we will both survive to be old women (I am already 12 years older than you!) Best Wishes!

  2. Dear Anonymous - Congrats on your second year! I have worn through so many oncologists that no one wants to see me more than they have to! I refused all conventional adjuvant treatment so in my onc's mind I am a ticking time bomb waiting to implode. I view my quarterly like my business taxes...have to be way around them without consequences...glad when its over! Here's to embracing our geriatric selves!!!!! Virtual hugs to you :+)

  3. hugs to you, too. Wish I had been brave enough to have refused further treatment after my bi-lateral mastectomy. As it was, waited 6 weeks prior to surgery to begin chemo. Then, after my first treatment of 4, A/C, my husband had a major stroke and was hospitalized for one month. Had no family and had to continue (or felt I had to- all my doctors kept saying, "You are NOT going to stop treatment!")with chemo while trying to take care of everything that needed to be done at the hospital each day. What a month November '08 turned out to be! I was terrified of the chemo and yet afraid to not have it. In some ways, (too late now, I know)I wish I had not had it but I have, so!
    Do you have your CBC done every three months? I am also taking Femara which is an estrogen blocker since my cancer was estrogen driven. What about you? I may have read this already and don't remember. I feel that I have found out more about breast cancer than I have ever wanted to know!

  4. Anonymous - Your emotional plate was beyond full in November 08! How is your husband now?

    In my situation, when I researched ILC and adjuvant treatment (which included the book "What Your Doctor Will Not Tell You About Breast Cancer" (which I first noted in my surgical oncologist's office) I had learned about the Oncotype DX test - which measures the efficacy of chemo on your individual cancer cells. I insisted that my first medical oncologist order the test. He was against doing so because of the late stage of my cancer. He felt I needed to "do something" and immediately; even if there was no true benefit. The test results showed that I would only have a 4% benefit from any type of chemo therapy. Yet, 100% guarantee of negative side effects. I did the math. As the mother of three and a small business owner (whose staff's livelihood depends on my daily toil) the math just didn't add up for me. I did have another consulting pathologist in San Francisco review my tests and medical file before I made my final decision. He concurred with the Oncotype DX.

    My personal decision was accepted favorably by two different oncologists. The first, who was unhappy with my decision broke HIPA and "tattled" on me (and I am not being facetious) to other medical professionals; the other actually verbally "bullied" me to accept chemo...the tone was "well, if you don't feel your life and the well-being of your children is worth a 4% potential benefit..." No oncologist, however, disputed or debunked the determination of the Oncotype DX test.

    I did the same when it came to radiation. And opted out.

    My ILC is estrogen-driven as well. As I was (still) premenopausal, the oncologists wanted to put me on Tamoxifen. At that time there was a report issued by a European confederacy of oncologists that outlined the risks of Tamoxifen (uterine cancer, in particular). My uterus has always been a "susceptible" area for me health-wise. I decided not to play roulette with that very tangible side-effect.

    No quarterly CBC pannel for me. I did acquiesce and agree to quarterly follow ups with my current oncologist; and bi-annual PET Scans and yearly breast MRIs.

    My only regret at this juncture is going for the reconstructive process. Had I known more about what this would entail -- and the daily pain that I am in as a result, which seems to be increasing as time goes on, I would have opted for tattoing over the mastectomy scar instead!

  5. My husband will never be the same after having a severe stroke, affecting his entire left side. Still struggling to accept that his life, as he knew it, is over. I hate hearing "new normal" but I suppose there is some truth in that phrase.

    I used to think that in treating breast cancer, depending on stage, type, aggressiveness, etc., the treatment was fairly standard. I no longer feel this is true. I was so terrified of having chemotherapy but since I had cancer in one lymph node, out of 8 which were removed, both oncologists said that would automatically mean that I should have that kind of treatment along with the estrogen blocking drugs, after that was finished. I asked for the Oncotype DX test, after reading about it in Susan Love's book and was told by my oncologist that the test was only for those people who didn't have any lymph nodes involved. He said he could order the test for me but I would have to pay the cost (2,000.00) out of pocket since insurance would not pay for it. I had dragged my feet, trying to make a decision for weeks and he was saying it was time to begin....6 weeks after bi-lateral surgery. I remember telling my husband, as he drove me to the clinic for my first infusion, that I felt like a lamb being led to the slaughter. I still feel nearly sick when I think of this. I know....too late. Over with...hope I never pay the price in serious side effects down the road, someday.

    I will say that I have never second-guessed my decision to have a bi-lateral and no reconstruction. I am thrilled to have been spared more surgery and inconvenience. I have had little turmoil over losing both breasts. In a way, it is a huge relief to me. I was tired of always worrying, from one year to the next, if they would find a fluid-filled cyst, something to biopsy, something that looked suspicious....just wish I had taken the plunge before getting invasive cancer and just had a bi-lateral years ago and gotten it over with, spared myself a lot of grief...if only we knew what was ahead of us and how that would have put us on a different path. I just thought I would not get invasive cancer even though I was high risk of getting it, with a lot of micro-calcifications, two masses removed of lobular carcinoma insitu, one mass removed in '97 that was benign, the two masses mentioned above were removed in '05 and then in '08, the invasive cancer was found.

    Whew, there is a lot more to my story but that is enough for tonight! Hope we will both do well...I find your story very interesting, although I had not remembered all of the details.