It's been a while since my last post and there is a lot to update and talk about. I'm going to try to do my best to keep it organized as it all comes pouring out of my head onto the page. I ask you to hang in there if I start to ramble or go down random paths of thought.
A little over a month ago I had a PET scan. I was told that the PET scan shows EVERYTHING, bones, tissues... everything. So they use the PET to see what, if anything is left of the cancer. That day didn't seem as scary as I thought it would be once I woke up and started the motion of things. I was so thankful to be at some kind of peace that day knowing how scared I was the last time I was having a scan. The wait for the next few days was a tad bit anxiety filled but I managed. I went to the cancer center that Thursday morning and checked in like always, they did my blood work, and then I went back to see the doctor. While we were waiting, my nurse navigator came into the room and my heart stopped beating for a few seconds. She never comes to my appointments, she always comes to see me in the infusion room. I began feeling a sense of terror to see her in a place she wasn't supposed to be right before I was to find out the results of my scan. Once she read the look on my face as well as my mom's and we expressed our concern about her being there, she assured us that was NOT why she was there. She was coming to see how everything worked out since we had had some trouble with the scheduling and insurance approval of my scan and I had reached out to her a few days before to get her help. After that, my heart started again and I felt a sigh of relief. She then said she didn't know any details but had just run into my doctor in the hallway and she told her things were looking good. WHEW!!! What a relief, but what was good? Within a few moments my doctor came in and it was time to talk about the results. As my heart pounded and she sat down she begin to say that I responded really well to the chemo. I don't remember all of the details right now but I will do my best to recall them. On a PET scan they read things using numbers and a 2 or lower would be considered negative for any cancer. I had two smaller spots on my bones (rib and spine) that were no longer even in the report and she said that would be because they didn't find anything there. My lymph nodes are also no longer showing any cancer. My breast was a 2.61 (I think that's the number) and they said that means it is gone from my breast. (I need to add in here that my doctor said scans are a good indication but until they remove and test the tissue, they can't be 100% sure). The only two spots left were the larger spots on my bones on the pelvis and sternum. We didn't talk numbers in the beginning of my journey so I was surprised to see the numbers for both of them at the start and what they are now. I can't remember which was which but one was originally a 23 and is now a 4!!! The other was an 18 and is now a 3!!!! You talk about response to treatment! All of that was such amazing news.
I should have been so happy and for a few minutes I was over the moon. Then we got to talking about next steps and how there might not be any other steps except for my maintenance treatment. When she was telling me they may elect not to do surgery or radiation if the side effects are too dangerous for the outcome, my heart sunk and I felt like it was all for not. Here I was hearing great news and then thinking that we were finished. It felt like my road stopped short and I had been depending on these next steps for months. So on this day that should have been joyous and celebrated, I hardly felt like smiling. A week later a met with the surgeon who spoke with me at length about all of the questions I had formed since my last doctors visit and I left his office with mixed emotions after deciding that we were going to hold off on surgery until at least 3 months to see what the next scan showed. He said giving my body more time would give a clearer picture and more accurate with another scan because the body had more time to calm down after 5 months of such aggressive chemo treatments. He never once told me he would not do the surgery and left it up to my choice but weighed in heavily with the pros and cons and was willing to talk through it with me that day as long as I needed to keep talking.
Ironically in a time that should be happy, because I'm doing so well, I'm struggling to stay positive. Since the beginning people have told me that a positive attitude goes a long way towards your health. Knowing what I have been through to this point and the progress that my body has made, I am a firm believer in that but was having some trouble finding that positive. To be counting on these next steps and then feel like they were no longer there was almost as big of a blow to me as the original diagnosis and discovery period. 2 weeks later I went back to my doctor for my 3 week treatment and check-up and she and I talked more about the decision with my surgeon. For the first time through all of this I felt she was very convicted about which path I should take and she said that if my next scan was stable (no growth in cancer since stopping chemo) or if it was continuing to shrink, that she had talked to the surgeon and they are going to do a lumpectomy as well as either remove a few or biopsy some of my lymph nodes. After that I would likely start radiation on my pelvis and sternum. The down side is if it's not stable (cancer has grown since stopping chemo) then no surgery or radiation and we will have to revisit chemo treatment plans. I don't know why that conversation gave me some of my power back but it did. I still can't put my finger on it but all I know is it gave me that extra boost I needed. So here we are just finding my new normal and trying to get my life back to where I was before until my next scan in about 2 months when we will then make new plans.
That all leads me back to being positive. I have shocked myself all through this process at the strength I have managed to find inside and at my ability to stay mostly positive. I know that is what has lead me to where I am now, beating stage 4 cancer with every ounce of my body and soul. It has felt so good to be back to "normal" feeling and being able to function through a week without feeling completely dependent on everyone around me to even sometimes take a shower. To know I have made it through one of the most debilitating experiences that anyone could ever go through and I'm still swinging is empowering. But... I have to say that it is so disheartening when I am talking to people who have pity in their eyes, their voice, their words as they speak to me. The one thing that has not helped me through this is pity or sympathy from others. I know it's hard to hide and you feel so sorry, I would feel the same way, but you don't understand the damage it does. I have not once given up on me, I have not once felt sorry for myself, I have not once believed that this is it for me because it is not. I do not claim it and I see the results of my strong fight. So I ask all of you to do the same. Do not feel bad or sorry for me, do not feel sorry for my family or my close friends, do not look at me with pity and sadness because if you do, you have given up on me, you do not believe in me, and you do not think that I can win this fight. Look at me with awe and inspiration, look at me as an example for awareness for women and being more in tune with their bodies. Look at my family with joy because you know they will all be stronger because they have seen me fight a damn good fight and look at my son with pride knowing he will be such a strong and wonderful human because of me and the compassion and love he has shown me through this at the young age of 6. There are people living through this, exactly like me, who have made it through and come out the other end. So many people think you can't beat it but I know now that you can. I personally know someone who has since shown me others who have come out of the exact same stage and type of cancer I have and are living a normal life many, many years later. I don't ask why me because I know there is a purpose for this. I know I'm supposed to open peoples eyes, show myself just how strong I am when for so long I thought I was weak, and show people what you can do when you put your mind to it. So again I say, do not feel sorry for me or pity me because I don't want people who have given up on me. I want people who are going to look at me and I can see in their eyes they believe I can do this, people who are going to check me when I start to get down, and high five me when I'm up.
I have to tell you that I have been thinking about all of this for a while and when someone looks at me so sad, I internalize it and use it as more motivation to prove them wrong. It wasn't until I got a letter from my OBGYN stating that she had received some of my recent information from my oncologist and she was "so sorry, I know it's hard going through this". I was thrown off by that letter and kept asking myself why she was sorry, did she not see how much progress I had made? I realized it was pity, she was "so sorry" because she knew it was hard for me. Unless you have been through it you have NO idea how "hard" it is but your "sorrys" don't help. So I decided she can keep her sorry (I know it was coming from a good place) and I ripped up the letter and threw it in the trash leaving the negative behind. I have no time for anything but positive because I'm POSITIVE I am going to beat this thing.
Love you all
#TeamWhite #IWillRise #VictoryIsInMyVeins #IAmTheStorm
