So I just looked at the date and it is exactly three months since my last post. I never mean to let so much time go by (and I know I say that every time) but this time, I just couldn't bring myself to write. I was angry and sad, I was scared and frustrated and I just didn't have the words. But I've given myself time, gone on vacation, gotten back into my "real" life, and I am ready to share what has gone down since my last post.
Exactly 10 days after my last post, I met with my doctor about my scan results. Every scan since I finished radiation had been clean, so I didn't expect anything different about this set of scans. Until I got his phone call...this time something was different. One lymph node on the right side of my neck had lit up hot, small, but hot. (My original cancer was on the left side.) He called me in the afternoon and basically said he needed to see me the next morning, first thing. It felt like being called to the principal's office. I felt like I had been punched in the gut. Cancer is such a bully.
Next morning, 7:30 a.m., Steve and I sat in his office and looked at the pictures from my scans. There it was, a little tiny spot on the right side of my neck. My doctor studied the images, then examined my neck. The spot was small enough that he couldn't feel it with his fingers, but he was concerned enough to start the process to schedule surgery to take it out. There was a possibility it wouldn't be cancer but I knew as soon as I saw that glow exactly what it was. My biggest concern? We were leaving in less than a month for a huge family trip and I was going, no matter what. And this is why I love my doctor...he promised me that I would be on that cruise...no matter what!
Fast forward to July 5 and I was back at Kaiser for my third surgery...all I wanted was to wake up without a trach. I was honestly more worried about that than anything else. You all know I fought like hell to get that trach out, I'm pretty sure that would have been the straw to break the camel's back, so to speak. My anesthesiologist (who turned out to be the niece of the boy's neurologist!) was a lovely young lady (I think I'm getting old...so many of my doctors remind me of Doogie Howser who assured me she would do everything in her power to make sure that didn't happen. My surgeon explained that just like the first time, he would go in and take out the offending lymph node and walk it to pathology. If it was nothing, he would clean up the surrounding scar tissue, close me up, and that would be that. If it was cancer, he would still clean up the surrounding scar tissue, but he would also have to do a neck dissection and take out all the lymph nodes in the surrounding area.
After a harrowing start (because of all the scar tissue in my throat, I had to be awake getting the breathing tube in...I will spare you any more details than that!), my surgery was underway. The moment I woke up in recovery, before anyone could say a word, my hand was at my throat, checking to make sure there was no trach! (There wasn't!) My doctor was there and explained that, indeed, as he suspected, the lymph node was cancerous and he had to complete the neck dissection and remove more than 20 lymph nodes and scar tissue surrounding it. The good news was that the cancer was still encapsulated, which meant it had not spread to any other lymph nodes. The other good news...he was sending me on my cruise!
After a couple nights in the hospital, I was home. Considering that the first surgery I had was actually five surgeries in one, only having one incision felt like a piece of cake! My recovery at home was not too bad, except for not being able to lift anything or move my right arm much. I didn't need much pain medicine after the first night home and I was driving again and up to my old tricks within about two weeks.
And then we had to meet with my radiation oncologist and the tumor board. The process for the tumor board is that you are examined by the oncologist, she meets with the tumor board (via teleconference) for a few hours to discuss a variety of cases while you go to breakfast or hang out somewhere, then you go back and find out the recommendations and make a decision. My oncologist was dismayed to find me on her Monday morning schedule, as those appointments are reserved for tumor board cases. But we discussed it and she really felt that there would be no further treatment necessary at this point. She had read all of my surgeon's notes and agreed with him that because of the encapsulation, it would be best to watch carefully, but not subject me to any further treatment. So we went on our merry way, off to a leisurely breakfast without the kids, before we had to be back in her office to hear the results from the tumor board.
Two hours later, she greets us at the door with a grim look on her face. While she and my surgeon agreed to the watch and wait plan, other doctors on the board were recommending aggressive treatment...reradiation and chemotherapy. I had prepared myself for the possibility of chemotherapy, but I had been under the impression that I couldn't receive radiation again because I had already had targeted radiation therapy on my neck. She explained that RE-radiation pushes your cells past the acceptable levels of radiation for a lifetime limit and that the risks and side effects of reradiation were more severe than the first time around. I won't get into all the risks here, but just know that it was some really scary shit she described. She was not a fan now because if I do have another recurrence in the same area, surgery is no longer an option and if I have already done the reradiation, she has absolutely nothing she can do. Basically, she wants to save it in case of a true emergency. But, the decision was mine (and Steve's of course) to make. Watch and wait or throw everything and the kitchen sink at it and hope I don't die in the process. Crap. Not a decision I ever wanted to have to make.
So we went home and cried. I cried a lot. And we talked through all the possibilities. We shared these conversations with a few close family and friends who all agreed the choices kind of sucked. And we basically decided that unless my surgeon felt differently after the tumor board, we were going with watching and waiting. So, two days later, we met with him and together, made the choice to be cautiously optimistic and careful and watch and wait. I made peace with the decision. If something comes up on my next scan, we will deal with it, but at that moment, I just couldn't see putting my life at risk. Do I wonder if it was the right decision? Of course. I worry about it every single day. But I had to make a choice. I am choosing to live every day as if I don't have cancer. That is my only option, other than spending my days curled in the fetal position, crying. And if, someday, the other shoe drops again, and I hear those words again, I will cry and rage and bargain, and then, once again, I will pull up my big girl panties and deal with it. Shortly after we found out my cancer was back, I was having a text conversation with one of my besties and she said "Cancer is a real asshole!" My reply? "Yes it is, but I'm the sparkly bitch who is going to beat it!" I believed it then and I believe it now.
I know this post is long, so I am going to bring it to a close. I know I say this at the end of every post, but I do plan on blogging more often. I am also working on how to bring my older posts over from my original blog site, but of course, that is a process, so bear with me. If you haven't been with me from the beginning, you can read more of my story at www.sparklesandspitballs.blogspot.com or on my Caring Bridge site if you want to go waaaayyyy back!
Thank you all for being here and following my story. Your love and support and kindness and prayers and sparkles mean the world to me!
Love and sparkles to you all,