So I just left my Radiology Oncologist’s office. His name is Dr. Muller and he’s a graduate of MD Anderson. He’s a phenomenal doctor and he takes time to explain and really to over things with you…. So, my radiation actually turns out to be the worst case scenario for ME…. and so today’s visit was eye opening and quite scary. I really wished my husband had been able to be with me to hear all he had to say…. but we’ve been so sick here and he’s had to take off work, so he couldn’t be with me.
Because my lymph nodes had extracapsular extension…. meaning that the cancer was trying to get beyond that lymph node… it could mean that in my other lymph nodes that there may be microscopic cancerous cells that could carry through my lymphatic system and land somewhere else to brew a new tumor…. This is what we’re trying to avoid. So… he wants to radiate all of the lymph nodes up my neck and the mammary lymph nodes in the chest wall, as well as the chest wall….
I asked him what my prognosis was…. after all this. He did not want to give me that number. He said… what I will tell you is it’s not zero…. and it’s not 100. He explained that there is a tail at the end of the chart…. Many people will die from breast cancer… but at the end of that chart is a tail and that tail comes up and it shows that the people who survived after all this was over… He told me, I have no reason to believe that you won’t be in that tail of people. He then told me he could give me those statistics… he’d be happy to print them off. And I graciously said…. “No…. thank you for your response. I do not want to focus on that number.” So….
The problem is…. my cancer is on the left side. My heart is on the left side and unfortunately he said they don’t have a lot they can do to protect the heart. My radiation will be a specialized case he said… they will have to do some extra things to me and for me to try to protect my heart… He said and example is taking a deep breath, it puts air between your heart and chest wall. I could end up with heart disease, narrowing of the arteries or heart attack. I would suppose worst case scenario would be heart transplant….
There are other risks… my ribs will be very fragile on that side…. so things like leaning against a pool wall or a big bear hug could snap my rib and it’s very painful and there is no treatment….
When I was there, I had the chance to ask him about the question I had with the MRI and it not detecting the lobular cancer in my breast. His response does make sense and gives me a little peace of mind…. He said… The tissue of the breast is dense and fibrous. Lobular cancer is dense and fibrous…. so within the breast, the tissue and the lobular cancer resemble each other and look the same… so it’s hard to see. However, when it travels or lands in another part of the body… that tissue is different and the lobular cancer would then show up on those other tests…. because it’s a different background, so to speak…
We were hoping to make a beach trip this summer… we have a client who donated a week to us…. He is going to allow me to wait up to 8 weeks from surgery to begin radiation to allow healing. This puts us in July before I start radiation….. He told me I really need to do the beach trip before I start radiation because he said after… my skin will be…. essentially burned and I will be very tired and will not feel like being in the sun… So, he is going to send me my radiation schedule and between weddings…. we’re going to have to TRY to find some time that we SO desperately need to take a FAMILY vacation. We haven’t had one since 2011 and to say the least… it wasn’t relaxing, we had a family tragedy on that trip. So… hopefully the beginning of June we’ll be lounging in Myrtle Beach…
I have people telling me… I need to have faith, stay positive…. etc, etc. I’ve done more than a radical change with not only my diet but my lifestyle…. My mindset has changed 100% regarding life in general… My priorities are different…. My diet is radically different. I believe FULLY in the mind/body connection. I had HOPED that my response to chemo would have been that I had NO CANCER…. I hoped that my diet would have been enough. I’m going to fess up now and let you know that although I tried to eliminate sugar…. I did still have Agave Nectar and Maple Syrup and Honey. For ME…. I may not be able to have these in my diet at all to eliminate or stop the cancer from growing because cancer feeds not just on sugar…. but glucose and our bodies convert a lot of our food to glucose…. Since my pathology came back… I’ve eliminated all of those other sweeteners as well. This has resulted in a bigger weight loss…. which is bonus…. I’m probably thinner than I was in the 6th grade right now.
Anyway…. because I’m asking questions and because I’m bringing these things to the forefront…. does not mean that I’m LIVING SCARED…. It means I am educating myself to give myself the ammunition I need to fight this disease and make sure it doesn’t come back…. My radiation oncologist did not want to share the statistics with me…. because the reality is… It can kill me. But…. he said it is curable. It didn’t take 1 year to get cancer… it didn’t take 5 years to get cancer… Probably everything I’ve eaten and done to my body… the stress I’ve endured as a whole…. has contributed to my cancer. I neglected myself. It’s probably not going to take 6 months to make it all better…. The fact that the cancer was not visible on MRI should make me leap for joy…. well it did, actually… But the reality was, there was quite a bit of cancer left…. Too much for my comfort. I can’t be so confident to say… CANCER WILL NOT KILL ME…. But I’m gonna fight DAMN hard….. (I’m not one to swear… but, it’s warranted for emphasis)
He told me… to help myself… I need to:
Keep a HEALTHY body weight
I am developing some lymphedema in my left arm. At this point it is mild…. but it can become a real big issue…. and I’m babying that arm. So can you imagine if I’d lift a camera all day long what it would do?
So, you know what I’m going to do???