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Mixed messages

March 2, 2018

Last time I wrote, I was getting ready to see my breast doctor after an abnormal mammogram. I spoke to Dr. Bergeron the morning of my appointment and we agreed that I would start hormone therapy. This means that I would take a pill that would affect the amount of estrogen that would be available for cancer to feed on. This was something that all the doctors I’ve seen have recommended. We have been monitoring my hormone levels and I’ve been taking something natural to deal with estrogen (my cancer feeds on estrogen), but because my estrogen levels have never been very high anyway, we hadn’t started any prescription medicine yet. Dr. Bergeron told me when I first met him that he had seen medicines like Tamoxifen (estrogen blocker) have a major impact on cancers even when the patient wasn’t doing anything else. So he said that if these spots were more cancer and I started taking something, it would “take the fire” out of it.

When I got to my surgeon’s office, I met with another doctor (possibly in training) who asked me about my treatments and what I had done since surgery. Dr. S came in and did an ultrasound to see the spots. She said she was not concerned about them, felt like they were probably associated with scar tissue, but would do a biopsy anyway.

Then she started talking to me about my type of cancer. She said that some cancers are like criminals that commit petty theft and some are evil serial killers that will kill you. She said mine was the evil one and it would take a lot of people to take it down. We had already talked about my treatment I was doing and I had told her about my test results, but she said while she believes in natural medicine, she basically doesn’t think it’s enough. I won’t go through the rest of the conversation, but she said a lot of things that were hard to hear, and we left there feeling like we had just been hit over the head with a bat. She also insisted I see an oncologist before my biopsy.

We got in the car and sat there in shock. I started crying. It was crazy. Was I going to die and not be able to see my kids grown up? Was I being foolish with my treatment? I couldn’t even be glad that she wasn’t concerned about the spots.

We left there and drove to Acworth where I had gotten a last minute appointment to have a thermography scan done. I’d been wanting to do it for a long time, but you have to wait 3 months after you have surgery. I figured it was a good time to get a baseline scan of my whole body. Also, many people doubt the efficacy of mammograms and dislike the added radiation. The mammogram I had last summer did not even detect the cancer that I could feel with my hand, so I’m glad to have more options for monitoring. (By the way, I got the thermography results and they didn’t see anything that concerned them!)

What is thermography?

Digital Infrared Thermal Imaging ‘DITI’ is a non invasive test of physiology (or function). It is a life saving procedure that can alert you and your doctor to changes in your body that may indicate early stage breast disease or other disease processes that may be developing in the body. Thermography offers the opportunity of earlier detection of breast disease than has been possible through breast self examination, doctor examination, or mammography alone. And the screening is done without any pain, no radiation, or compression!

We spent the rest of the day packing to go to China. We talked about it off and on throughout the day. I alternated between tears, numbness and confusion. I know a lot of you were waiting for news, but what do you say? “The doctor isn’t concerned about these spots but said I was going to die without chemo.” ?? Jonathan wondered what had set her off. Was she not aware that I was doing immunotherapy and this was her shock response? Had she just seen the results of my Mammaprint? I don’t know. I know she is doing her job and advising me based on her knowledge and I respect that.

Finally, that evening, we talked again and both agreed that nothing had changed since last week when I felt good about my progress. We hadn’t gotten any bad news. We already knew about my type of cancer. We are already treating it as one with high risk of recurrence. I was able to mostly let go of the fear and panic.

We went to China the next day and had a wonderful trip. It was an answer to prayers in so many ways. Jonathan and I resolved again to focus more on doing the things I need to do to be healthy – most of which we should all be doing anyway. Staying cancer-free is going to be a life long effort. I can’t just get well and then slack off. Just as the nurse Karen said, even if it takes another 35 years to come back, that will be too soon.

When we came home, it was a harsh transition back to reality. Medical bills, appointments to be made, appointments to be dreaded. It had been nice not thinking about all of this for a couple weeks. I have treatment on Monday and will meet with Dr. B. After that I will go see a different oncologist. He is supposed to be more open to alternative treatments, but he is at Emory so I have no idea what the appointment will be like. I’ll have my biopsy on Thursday morning.

One of the things I hate the most about this is that I have to be prepared for battle when I go to these appointments. This is a whole other post, but I don’t like how we do medicine in this country. I wish all my doctors could work together to provide the best treatment for me. I also hate that my choices are constantly being questioned in a critical way. In the past couple weeks, we’ve talked through the choices we’ve made so far, and I would still make the same ones again. I feel better than I’ve felt in years. I have energy. We are tackling issues that have affected me since I was a teenager like always being tired. In the fall, I was in no position physically to do anything that would further tear me down. We will continue to monitor my numbers and scans and have discussed other tests that will give us more information.

If you’re still reading this, I applaud you. Thank you for caring.

9 Comments leave one →
  1. Randi Bowman permalink
    March 2, 2018 13:36

    Love you sweet Grace! Thank you for sharing and I’ll keep praying for you! (((hugs)))

  2. Robert permalink
    March 2, 2018 14:11

    Grace, you’ll get through this. Keep being strong. Barry and I are thinking about you, and we’re on your side.

    Tell Jonathan hi!

  3. Darcie Bailey permalink
    March 2, 2018 14:48

    Wow, Grace. What strength. I had no idea of your story, only the obvious that I knew you had undergone treatment for cancer. I will pray for you as you conquer this evil serial killer.

  4. Dedee Panayis permalink
    March 2, 2018 16:02

    Grace I have and will continue to pray for all of you and that God will take away the cancer.

  5. charitylou permalink
    March 3, 2018 07:51

    I love you so much, Grace. Please let me know if I can do anything… prayers continue. xoxo

  6. maggie permalink
    March 6, 2018 22:01

    Your words are a gift, Grace. Thank you for sharing them!

  7. Jonathan Lewis permalink
    March 7, 2018 07:46

    You’re the strongest, courageous woman I know Grace and our girls have been, currently, and will always a beautiful role model in you. We will stay strong and trust in the Lord our God to lead us. I love you.

  8. March 19, 2018 12:27

    Thank you for sharing this personal story and letting your followers read your story. Truly empowering and you are a strong woman! Keep us updated on things happening!
    -L

  9. March 27, 2018 23:31

    Hi Grace!! Kim and I will be praying for you. I also have a little cancer issue. Failed my colonoscopy last December 28. Shouldn’t have procrastinated so long. If I’d gotten it done 4 years ago, when we first returned from Vietnam, probably could have cut it out with the scope and been done with it. Turns out this little tumor they found is Stage IIA, penetrated the rectal wall, but no evidence of spread to the nearby lymph nodes…..I’m on medical leave from XJT while we get rid of this thing…..finished six weeks of chemo-radiation treatment two weeks ago. Now, convalescing from that before surgery sometime in late April or Early May. Praying the treatment did its job and the surgery will be the end of it…….

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