What I am about to post is really difficult. I know that everyone loves us and will want to call, come see us, and message us, but Sean and I are trying to gather ourselves and we need some time. Please feel free to facebook private message us or text message us, but if we don't get back immediately, please understand. Each time we have to retell this story we grieve it, so that is the beauty of this blog. Because we love you all so much and we want you to be informed, here it is.
I had a CT scan on May 18th, because I asked for it soon after I had my mastectomy follow up appointment with my oncologist. We had done a CT scan and bone scan in December 2010 prior to chemo so we could have a before and after picture to ensure the chemo worked. If you remember the December results confirmed the mass in my breast, lymph nodes, and scattered cancer cells in my abdomen and a 1 cm growth on my adrenal gland.
I went into the CT scan on Wednesday May 18th and upon leaving the nurse stated that they would call me within 24-48 hours. On my way home I was talking to my friend Shelly and I said jokingly,"oh I probably won't hear anything until Monday." However, something inside of me was telling me I was wrong. There were other things that I was feeling too but I didn't want to believe, I will get to that in a minute.
I get home and within 2 hours the nurse calls me. My heart dropped when I saw Dr.Rabe's name on my caller id. I knew this was not good. How did I make the 2 hour call back list, I want to be on the 48 hour call list...you know the call back that has nothing significant to report...you know you are fucked if they call you back in 2 hours. I answer the phone and the nurse states that the doctor has read my scan and has found something "suspicious" and is wanting to schedule a PET scan, which is basically a high definition scan they use to find cancer throughout the body. The nurse told me not to worry too much, it could be nothing. Really, really, don't worry, come on! The nurse hesitated when I asked her where the "suspicious" situation was in my body and she hesitated and said....well....."in your back". First of all I didn't like her hesitation and no one ever needs to draw out the word well or use the word "suspicious". The word "suspicious" means nothing ever...think about it. The nurse stated that the scheduling team would be contacting me with the first appointment available, again if it is nothing why is everyone rushing around. I got off the phone sat on my couch and had a good cry. It's not the cancer that is killing me, it's these damn bad phone calls. I am tired of this, I don't want to be in this club. As I sat on my couch and I cried I had that feeling, like I was talking about earlier, and I said to myself, worst case scenario is that it is in my bones.
I was scheduled to have my PET scan on Thurs. May 26th at 11:30 and results read with the doctor at 3:30 the same day. As I laid in the scanner that morning I already knew what was coming. Call it God, call it the universe, call it my own intuition, I just knew.
Here is the bad part, Sean had gone to Hawaii on the 18th for a friend's wedding that I was suppose to be going to as well but earlier in the year the doctors had said I shouldn't go b/c I might have a compromised immune system at that time. The night before Sean left, he said to me that he felt bad going without me(but we had already committed to share a house out there with the couple before I was even diagnosed) and he felt weird being away from me for such a long time. I reassured him, and meant it, that I would be fine, I wasn't even in any serious treatment right now and he needed to go to take a vacation from cancer. Though, in the almost 6 years we have been together this would be the longest we would be separated, that's either really cool or kind of weird...just kidding. So Sean was on a plane when I got the results. We had planned for him to meet me at the house after the appointment. My mom, and girlfriends Cora, Shelly, and Kressy attended the results appointment with me.
Dr. Rabe walked into the room and inquired where Sean was and why the room was filled with my girls. I explained the situation. She was direct and said she was glad I had brought extra support because what she was about to tell me was not good news. She directly said the cancer has spread to my bones, I am now stage 4. There is a mass on my spine covering vertebra 8-11, a mass on my rib, and widespread throughout the other bones in my body. She then says that she has seen women live up to 10 years with this.
So the doctor allowed us to ask many questions and it was extremely difficult for her to give us the news. I felt so sad for my mom, I can't imagine what she was feeling. I felt sad for my girlfriends too, and most importantly I was already preparing to drive home and tell my husband there is a potential that he may be a childless widow by the age of 40.
The next day I had an appointment with my radiation oncologist,who is from Mayo Clinic, and Sean and I went to get his opinion of my scan. I was sure that he would say that I should go to Mayo Clinic, however, he said because the type of cancer I have and the aggressive nature it is moving without a doubt he would tell me to go to MD Anderson in Houston. Again, before he confirmed that for us, I "had that feeling" or that voice telling me that I need to go to Houston. He stated that this is the best academic hospital in the WORLD, for my type of cancer. He stated that most likely they will recommend chemo treatment. He also said that this our golden ticket. That we have to get this combination of chemo drugs right this second round because the likelihood that a 3rd or 4th round working would be severely diminished. He also explained that the cancer in IN my bones versus ON my bones which is a good thing. He explained that this would be more treatable with chemotherapy. He explained each case is different and prognosis varies, but my young age is a benefit, and another benefit is that the first rounds of chemo appear to have eliminated the scattered cells in my abdomen, remaining lymph nodes, and the adrenal glad. Sean and I said that we want the most aggressive treatment possible. I said bring me to the brink of death if you have to, just be able to bring me back.
So this is the plan Sean and I feel comfortable with at this point. We have already contacted MD Anderson in Houston and we are waiting for them to call back with scheduling most likely on Tuesday. Tuesday I have lab work to be done. Thursday I meet with a doctor here in KC who will be preforming a bone biopsy and within a few days of that consult I will have the bone biopsy. The consult is needed because we will need to determine which bone will be able to harvest to best bone sample with the least amount of damage. Apparently, with bone biopsies there can be plenty of complications/infections. The doctors are all hoping that the cancer in my bones is a different cancer from the cells that were in my breast. The doctors cannot understand why my cancer is so aggressive right now with only being 2 months out from chemo, this may have been more predictable if I were years out. Again, I am an atypical case! That's why we are going to MD Anderson.
I know this is not the news any of us wanted to hear, but it is what it is and we will deal accordingly. I will fight this because I love you all and life way too much! Sean and I are spending some much needed time together these last few days and will hopefully get our feet back underneath us soon. We love you all and thank you for your thoughts, prayers, and positive energy.
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