Tuesday, June 12, 2012


The news of Robin Roberts diagnoses was a blow. She is my hero, I admired how she was doing everything right, following doctors orders to the T, always cheerful and then this.
She will fight and I feel win this battle because she is young and relatively healthy except for the blood disease.

I am a 5 year, 7 month survivor of Triple Negative Invasive Breast Cancer. I had Chemo and Radiation treatments. I see my oncologists twice a year, one time with the Chemo doctor and another with the surgeon. Who scares me the most? The surgeon, because he does the mammograms and the waiting for the results are nerve racking even though I get them before I leave.  My original Chemo doctor left to go to Texas to do research. I trusted him with my life, and now I will meet another one this Thursday for my appointment. I hope I connect with him like I did Dr. Geyer, as long as he is through that's all I hope for.
With Triple Negative Cancer there is no pill to take for five years when your done with treatment, no safety net to
catch you. You have to be the one to take care of you - - -diet exercise and so forth.
   In the past 5 years I have been diagnosed with Atrial Fib, Low Heart Rate and Pre-Cancerous cells in the reproduction area. I had a radical hysterectomy, I have a pace maker, I have to take a blood thinner and have my blood checked regularly. And I am on heart medication. My energy level leaves a lot to be desired and my walking is slow, not even normal, but slow.
   I truly believe all of these were caused by the Chemo & Radiation. The Chemo is a poison that kills the bad and also destroys the good. The radiation affected my heart and who knows what else. - - - BUT - if I didn't get treatment what would have  been the alternative? Something I'm not ready for.

I go to my PCP every 3 months, all he does is check my heart, asks how I'm doing and sends me on my way. Whenever I bring something up that is bothering me, he either says it arthritis or its caused by my weight. I have seen larger people then myself able to walk normal and I feel I should be able to. I go to the gym 3x's a week and work on my legs but even that does not make it easier. He doesn't even read my chart before seeing me, cause when I do ask him something he acts like he doesn't remember that. I would love to find a doctor who would be interested in my health and not be so busy that he can't.
I see my heart doctor twice a year. he checks my pace maker and asks if I have any questions, which I usually don't and sends me on my way.
The drugs I took were Taxatatore and Dioxin - they caused my white blood cells to crash down to zero and I was put in sterile room until they could build the white cells up again.

You can never feel safe once you have had cancer, you pray and take one day at a time and try to make the most of it. 
 I have just tentatively start planning in advance, months in advance and that scares me, but I'm doing it, even thinking about next years vacation, which I have never ever thought so far ahead because I would not let myself.

I pray that Robin doesn't have a tough long road to hoe and her recovery will be quick.

Cancer's lifetime commitmentBY KATHY LATOUR | JUNE 11, 2012

By now the cancer community has heard about ABC news reporter Robin Roberts' diagnosis of myelodysplastic syndrome, a pre-leukemia condition that will require a bone marrow transplant -- and is most probably a late effect of her treatment for breast cancer five years ago.

It is a reminder to all of us that finishing treatment does not mean cancer is over. What it means is that we have to shift our thinking about the way we view our health care to add treatment for cancer as a possible risk factor for other health concerns for our future. When we have cancer we have to watch for second cancers, cardiac issues, fertility concerns, and many other late effects of the drugs and other treatments we undergo. And part of the challenge is that we will each face physical concerns that may or may not be connected. After breast cancer at 30, my friend Diane battled hormonal issues for more than a decade until she finally had a complete hysterectomy. She was the first in her family to have such problems. Were they connected to her treatment? I developed bilateral neuropathy in my feet more than a decade after treatment ended. Was treatment related when I didn't have any of the taxanes?

I am in the middle of doing a feature on the late effects of treatment for the adolescent and young adult population, which is ages 15 to 39. This age group is in a particularly difficult place because they are mobile and often don't have health insurance. They are also trying to become adults, and a cancer diagnosis may be emotionally as well as physically crippling.

We all want to leave cancer behind when treatment is over. We want to get on with our lives and forget those awful months of treatment. But the reality is, as we have begun to live longer, the late effects of the drugs they have developed to keep us alive have come to light, and some are serious. If your oncologist didn't tell you what those late effects could be, find out. Do your own survivorship care plan. There are a number listed at the ACS site. Tell your primary care physician and, together, research your risk for cardiac issues, second cancers or other concerns from treatment you may have had. Know what kind of monitoring you need and don't put it off.

Trying to leave cancer behind and pretending it never happened can have some serious consequences.

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This time of year makes me think of all of those things I have to be thankful for - - - -
my husband
my children
my grandchildren
my health
my freedom
always thankful for friends made