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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

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Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Sunday, September 28, 2008

Just have to say

I removed the first part of this because it became known to me that someone thought I meant them, well, I meant people in general. I have a program that tells me who visits the blog and when, and I know who and why this was relayed, so to them I say, I am sorry, but I do stand by what I said as a general concept. Ego is ruinous to relationships, and the need to control everything can hurt many people. Trust goes both ways.

I learned a while ago, we must not put all our eggs in one basket. When I was diagnosed with cancer, my breast surgeon told me he thought I had IBC and needed to have immediate surgery. I trusted him, heck; I was scared and just wanted the cancer out of me. So I had a lumpectomy and sure enough, I had cancer.

After my mastectomy, which was 3 days after the lumpectomy, I went on-line to research IBC. It has a very specific treatment; chemotherapy, if your are HER2+ they will use Herceptin, then surgery (mastectomy, usually bilateral, but often unilateral), more chemotherapy, and then radiation and finally Tamoxifen or an aromatase inhibitor if you have estrogen receptor positive cancer. It is grueling, it has to be, IBC is aggressive and often misdiagnosed as mastitis so it is usually advanced before is it diagnosed, it has a lower 5 year survival rate than other stage lll IDC or ILC.

I was furious with my surgeon because what he did to me was condemn me to a quick death. IBC should not be cut into; it causes it to spread quickly. I cried for the first time and felt real fear that I may not survive cancer because of him. When I met with him for surgical follow-up, I literally threw the sheets of paper about IBC at him. He said "You do not have it" and that was followed by, "Stay off the Internet, let me take care of you, the Internet is full of misinformation". Well, I did not heed his edict, and I am glad I did not, because I believe my own research and the course of treatment (and mastectomy, chemo and a second mastectomy) I chose saved my life. A year later my oncologist agreed and told me to continue what I was doing, the surgeon was very happy I was "still with us" and did not have a recurrence, and he recanted his statement about my researching on the Internet, and said he was glad I was an "informed patient". I won't go into everything here about what I chose to do or not do, if you would like to know, email me at

I will tell you that I knew with every fiber of my being that if I continued on the course the oncologist set for me, I would not be here right now. I knew what I had to do, and I did it, despite his objections. I believe I God directed me to stop the rest of Chemo and to forego radiation, his voice speaking to me in the stupor I was in, in the near coma I fell into after the infusions of Cytoxan and Adriamycin. He knew two little girls were waiting for my family, for me.
After confronting the breast surgeon with the research I had done and him he saying I did not IBC, I found that I had a hard time trusting him and did not feel better about my misdiagnosis. I was not until I was allowed to view my cancer slides at the pathology office that I found peace of mind. I did not have skin invasion, or clumped nodes, and it appeared I did not have IBC, but the pathologist also said, he could not confirm that 100%. Micromanaged my treatment, you bet, I wanted to LIVE, and it was not because I did not trust in God, but God gave us brains to use to help us in this life, so we have a duty to do so. Empowerment, taking charge, being part of the medical team you HIRED to help you beat cancer. You are not something they work on, but SOMEONE they work with. That is my belief, which is how I live now, and how I worked to survive cancer. Will it come back? No guarantees, none of us are guaranteed our tomorrows, but I am here now, yes thank you God, I am.

I will say this, cancer, adoption, buying a house, or anything in our lives which is more complicated than just we can deal with alone needs to be researched, we simply cannot trust one source as the be all and end all of knowledge. When we do a research paper for school, are we allowed only one source? No, and the same should hold true for everything important we do in our lives.

If a person or group ever tells you listen to them and no one else, run the other way, it is folly to do so, sure we need to have faith, but maybe the faith should be in ourselves to find the whole truth. Do not let fear direct you in your life, have faith that God will lead you where you should go, if it feels wrong he is talking to you, if you are uneasy, maybe God is trying to tell you something. Use the intuition you were born with, and have the faith in yourself to listen to your heart.

1 comment:

carol said...

Well said Kris. You are so strong so many people could learn from you if they would just stop and listen.
carol n

Beautiful artwork featuring children

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