Prognosis is a Dirty Word

Today I woke up and said, "I am going to live like I don't have cancer." I came downstairs, was greeted by two of the happiest boys on the planet (Bill and Sammy) and said, "let's go to the zoo!" It was as if I finally pushed through the dark fog and into the sunshine again. I wasn't going to let the news of the past week, and the last few months, determine my future. We were going to enjoy this day without a metaphorical cloud over our heads.
And enjoy we did. Sammy saw the bright colored fish, the sluggish sloths, the crazy monkeys, and avoided getting pooped on by the birds in the bird sanctuary. If that had happened, I probably would have just shrugged my shoulders and said "yup, today I am the statue!" But it didn't. We met up with Katie and Mat and little Myles. Sammy was more interested in all the kids than the animals, but that's ok. Bill and I got to push him around and point things out to him and have him smile. I got to be the mom who makes all the animal noises when we saw them. Sammy particularly likes when I do what the pig says. So my son likes me snorting, I'll take it.
We had a nice lunch and then a really sweet visit with cousins EB and John. The whole time, Sammy just smiled and babbled. I'm so blessed with a happy baby. It was so nice to be out in the fresh air, enjoying the day as a family. If not for the scarf on my head, I probably would have totally forgot that I was walking around with the big "C" on my back. But there were moments today when it completely slipped my mind and I was able to bask in the glow of being a mommy. And after the week I have had, it was a nice distraction.
I promised you all I would update you on my Johns Hopkins consult. Bill and I drove to Maryland on Tuesday morning. Of course, I can never make things easy, and was in the hospital all last weekend because of anemia. Damn chemo kills cancer but ravages your body in the meantime. To those of you without cancer, let me explain. There is a window of time after your chemo treatments where your blood counts drop. This means things like your white blood cells (what fights infections) and red blood cells, your hematocrit (iron), and your platelets. Unfortunately, when you start the battle against cancer, it becomes a numbers game. You start to pay attention to lab work and you get to be good friends with the phlebotomists. Having someone take your blood becomes almost like a hobby you can list on your resume (easy to find a vein in, etc.) Because of my chemo, my levels dropped significantly and I found myself at the Crouse Inn and Day Spa for a blood transfusion...after 8 hours of waiting in the limbo area of Crouse, AKA the ER. That place was a nightmare. People were given gowns in the waiting room and had IVs put in. One girl was moaning and groaning about a tooth ache and whipped out a toothbrush from her backpack and started dry brushing her teeth. I didn't have the heart to tell her that the brushing was being done a little too late for that toothache. Then there are the frequent flyers of the ER as I like to call them. The ones that know all the ins and outs of the ER and drive everyone nuts. The one next to me (Screw HIPPA laws, when all you have is a curtain between you) had bags for each hospital in Syracuse. He had been to all three within the last two days. Then there was the drunk across the hall that my mom (always the nurse) ran out of my "room" to save from falling on his head. Needless to say, I will never get those 8 hours of my life back, but they were somewhat entertaining.
After the blood transfusion (give blood people!), my counts went up a tenth of a point and my platelets continued to fall. The problem with platelets falling is you could hemorrhage if they get too low. They monitored me for two days, and I had a CT scan to see how the chemo is working. I'm happy to report that my liver seems to be stabilized and no new metastasis. (There was a 24 hour period of freaking out though because there appeared to be something involved with my pancreas but an MRI determined that was not the case...PHEW!). Finally on Sunday, the on-call oncologist let me go home. However, I had to give him a piece of my mind and tell him I wasn't staying another day to be monitored because I had a 6 month old at home who needed me. Hell, I would have broken out of there in my gown with no pants and my bald head at that point. The nurses on the oncology floor at Crouse are lovely, but they don't compare to my round-headed blue-eyed, fuzzy-head. I needed to be home.
We made the decision to go to Maryland without Sam, because the weather is so unpredictable these days and it was a long drive. It broke my heart to leave him for those two days, but I knew he was better off with my parents and not being carted all over Baltimore. The drive was easy, but I couldn't help but think about why were heading there. I had done the drive a bazillion times, but always for happy occasions like Christopher's birthday, Kathryn's graduation, sister bonding time.....and now I was making the trip to learn what the top doctors thought of my case. Seeing the different landmarks that I have come to know on the trip, there was less joy in the thought of being closer to Baltimore, than there was anxiety about what he was going to say. Would I be heading home defeated? Would he tell me things were all messed up and he actually could cure me? I'm sure you can guess that by the time I got to Jamie's house I was an emotional basket case and ready for a hot bath and a stiff drink, neither of which I got!
My sisters were both determined to be there for me through this ordeal. Jamie was our driver and got us to the appointment a full hour ahead of time. Kat slept at her office after working the overnight shift, so she could be there to ask questions. I'm not going to lie, Johns Hopkins is an intimidating place, and for once, I was happy to have the little sisters in charge. The waiting room in the cancer center was as big as a cafeteria. Every few minutes a nurse would come out and yell a name. So we sat there, the four of us, basically at an emotional standstill. Once my name was called, and we were behind those doors, there was no going back. We sat there and tried to stay busy, make small talk with eachother. Kat told us how she coordinated her first heart transplant the night before. Jamie started obsessively rearranging my binder of information for the doctor. We heard them yell a variety of names, the best of which was "MISS SASSY??? MISS SASSY?" Then they finally called "Miss Jodie" (that's a southern thing, especially if they have no clue how to say your last name!). I was heading back for my second opinion. The wheels were turning and there was no going back now.
I met with Dr. Antonio Wolff. He was dressed all in black and could have passed for a priest to me. He was surprised at the posse I had fit into that little room, but he made sure to introduce himself to each of them. Then he got down to the business of getting to know each of us. At one point I started to question who the appointment was actually for, as he asked my sisters what brought them to Maryland, how old they were, and my husband where he was from. I felt like shouting, "Hey, I'm the one with cancer, it's all about me here!" But I refrained. We went through all of the pathology and scans I had. He actually called the Johns Hopkins pathologist to converse with him. And he came back to tell us what we all have been saying for months....I'm a rare case. No one wants to see their doctor do a google search, but that's how rare I am. He did a case search to see what he could tell me about my cancer. Basically the reason I am out-of-the-ordinary is because of where my cancer appears to have started, in the breast. The kind of cancer I have, neuroendocrine small cell carcinoma, most often originates in the lungs. Knock on wood, I have had no lung involvement. The pathologist believes that the small tumor in my breast was the primary culprit that metastasized to my liver. So the main question is do you treat this as a lung cancer or a breast cancer? That's when another thing came into play. My cancer tests estrogen positive, which again points to the breast cancer primary.
Dr. Wolff played out both scenarios for me. The lung cancer scenario....not so good. The breast cancer one, just a bit better. The problem being that neuroendocrine cancer is very aggressive. In his words, I can go into remission but the cancer cells "misbehave" and are likely to come back sooner than later.
He used the word "prognosis" which I have learned to hate. His basic "prognosis" to me was that yes, I could go into remission, but most likely it would be for less than a year. He said he wasn't trying to be pessimistic, just realistic. My heart sank to my toes. I was hearing about every other word at this point, things like "chemo" and "metastatic" and "reoccurring." All I could think of as my husband was rubbing my back was my little baby at home. I just wanted to smell him and hold him and never let go. I looked over at my sisters, Jamie was pinching her nose trying not to cry. Kathryn was looking down and avoiding eye contact. This wasn't the news we wanted. I stopped the doctor at that point and said "So what are you saying here? What are you telling me is going to happen?" Dr. Wolff looked at me and said, "How much do you really want to talk here?" At that moment, the words came out of my mouth before I had a chance to even evaluate what I was going to say. I said, "I don't want to talk. I want to leave it at what has been said. I don't want numbers, a timeline. I'm going to prove you wrong." And in that moment I made a decision. This cancer can no longer define me as a person. It has taken so much control out of my hands. I just want to live my life, and live it with wild abandon again. Dr. Wolff understood. So we started making a plan for how I would tackle this and hopefully pleasantly surprise him. I will be finishing out chemo with 6 rounds total because he said my body won't be able to handle much more. Then I have to start taking an estrogen blocker and shut down my ovaries. He printed out a case study of a woman like me who took those pills and was cancer free a year later. That gave me hope and the doctor hope. Then I had to ask even though I already knew the answer. "No more babies for me?" The doctor shook his head, "It would be much too complicated for you to do that." Check that off the list of things cancer has taken from me. Now I can't even choose to have another child. I wanted Sam to have a sibling, but I guess it isn't in the cards. I'm still mourning the loss of that decision. I haven't quite come to terms with it. Sam is perfect, and I'm so glad I have him, but to have that yanked from me because of god damn cancer, is beyond upsetting. But if I have to do this to have more time with him and everyone else I love, then the decision is a no-brainer.
I left the appointment in somewhat of a daze. Some things I heard were good, like the fact that I have been on the right chemo regime all along, and that I probably can be done with chemo for awhile. But hearing the word "prognosis" being told you won't ever qualify for any kind of transplant or surgery, and that you will never experience pregnancy again was heartbreaking.
As we left the hospital and tried to go and have a "normal" lunch, I was flooded with so many emotions. I played the doctor's words over and over in my head, saw everyone's reactions in a blur in my mind. I allowed myself a day to wallow. A day to cry over the babies I will never have. A day to worry about Sam and Bill and who will take care of them when I am gone. I broke down at lunch to Jamie and said, "I just want to be a mommy." I went back to Jamie's and she set up her hot tub for me with candles and music and she let me be. I listened to sad songs and sobbed into a washcloth so no one would hear me. I pleaded with God, my grandmas and my Aunt Kathy in heaven to please let me live....to give me a miracle.
I laid in Jamie's bed and begged for my mind to quiet down. I wanted to sleep for a little while and awaken from this as if it was a nightmare. The intelligent Jodie knew this wasn't possible, but the emotional Jodie thought it could be a possibility. I did sleep for just a short while. When I awoke, there was a house full of people awaiting me downstairs for dinner and to try and cheer me up. As I got dressed, I put the pieces of my heart back together and decided that I had had enough of a pity party. It was time to resume battle. When I got downstairs, everyone took their cues from me. I wasn't going to let this ruin our evening so I made sarcastic remarks and eased into conversation. I asked Christopher about his day at school and soon it was like any other night. We were laughing and eating and drinking and talking. Cancer had left the room for a moment. No one was mentioning the dirty word "prognosis." It was just as I needed it to be.
We came back to Syracuse the following day because I couldn't wait to see my Sammy. When I burst into the living room to see him, his face lit right up and I swear I hugged him for an hour straight. Bill's eyes filled with tears when he saw him. We were home and together, where we should be.
Today I woke up and put the big "C" in the closet, along with the word "prognosis." I figured the two of them could keep eachother company, afterall misery loves company. And it worked. I went through my day with a smile on my face, energy galore, and love filling my heart. I felt like Jodie again. And I looked at my little family of Bill and Sammy walking ahead of me and realized I have everything I ever wanted. I have a husband and son who adore me, and nothing, not even cancer, can take that away from me. It may put some obstacles in our way, but it can't take the love we share. We are our own little unit who will live each day to the fullest as long as we can, no matter what percentages, time lines, and a prognosis says. We as a family, we got this.

Staging Your Fear

I'll admit it finally. I'm scared. I've been living in fear for the past couple of weeks. I've been strong and "fearless" up until this point, giving everyone the right answer when they ask. "I've got this!" "I'm keeping up the fight.!" "Screw cancer!" And for the most part I have believed it. But somewhere in the space of the past few weeks, the magician has slowly tugged the covering off of me, and the scared little girl sits in the place of the strong, brazen woman.
I hit the ground running when I was diagnosed. I took about 45 minutes to grieve the loss of life as I knew it. I kicked and screamed, ranted and raved....sobbed. But I shut it off and resolved myself to fight the good fight. I would be the face of courage, the backbone for everyone going through this. I would be what I had to be to win.
That worked for the past few months. I have bracelets with my motto on them, I've been heartened by the response to them. People all over have reached out and offered prayers, support, love and understanding. I was introduced to people who just wanted to help when they heard my story. My blog has been met with tremendous support. It's been overwhelming. But somewhere along the way, I felt I became the poster child for cancer. That's a lot of weight on one person's shoulders. Be what everyone wants you to be, be strong and fearless. I have found myself in moments of gut-wrenching despair. Moments where I can't face another person asking me what they can do to help, ever reminding me that I have cancer, I'm not well. Of course, everyone is well-meaning and I am overly appreciative. But I have to ask, why do some people find out you have cancer and feel compelled to tell you about everyone they ever knew who died of cancer? I know people need to relate, but come on! It's devastating to me everytime someone starts talking to me about others with cancer.
You see, I have been struggling with the whole idea that I am stage IV and that my cancer has metastasized. Whenever people start talking to me about others with cancer, I feel they inevitably say "and then it mets to their liver...." It's hard to stay focused and not drown in despair when people are reminding you of others in your exact spot who have lost their battle. When I hear that, it is like a notch is taken out of my armor. But I continue on and force the smile. I will get through this I tell myself. I will not be like the others.
And then there is the fact that my humor is starting to lag off. My sarcasm is born at the price of others and sitting around a house all day, snowed in with a 6 month old and a retired fireman does not lend itself to much material. I'm turning into a pj wearing house frau. It's bad enough that I look in the mirror and don't recognize the bald blob facing me, but to take my humor? That's just cruel.
I have been asked to join support groups, to meet with others going through what I am going through, but I just can't do it. I feel like I am the odd man out. I'm young, a new mother, with end-stage cancer. Yes, I technically have "breast cancer" but I don't identify with the whole "Think Pink" campaign. I understand that the whole "Save the Boobies" mentality works for some and a raging attitude toward cancer and all it encompasses drives others....but it's just not me. Don't get me wrong, cancer SUCKS! But I can't sit here and rage against it, I feel that is wasted energy. I was then offered a support group that was for late stage and metastasized cancers. I thought about this for awhile. Would I feel more at home there with people who were facing a similar battle? Ultimately I decided that I wasn't. At least I am not ready for it. It is too devastating to me to hear other people's stories. And I then feel guilty when I get somewhat "good" news (if there is such a thing in the world of cancer) and they are getting nothing but bad. It's just too much for me to handle and it causes me to focus on the negative.
So back to my stage IV dilemma. I just can't seem to shake those words. "Stage IV." I feel like they are my cross to bear. Some try to lift my spirits by saying that staging is just logistical and for the doctors only. But I'm not dumb, and I don't live in the clouds. What I have is very real and very serious. My cancer is aggressive. My life is in jeopardy. There, I said it. I said it out loud that I am scared to die. Scared to leave my baby boy and not guide him through his life and dry his tears, hold him when he's hurt, or be there to cheer him on in his moments of glory. No amount of support group gatherings, pink garb, or snarky cancer comebacks can prepare your mind for those thoughts. For the very reality that you might not be here this time next year. Every ache, pain, change in appetite has you questioning if something more is wrong. Your life becomes a series of breath holds awaiting the next scan, the latest blood work. At those appointments, when you are surrounded by your loved ones who are there to support you, you can't help but feel like you need to shield them and take down the fear before the news hits them in the face. You will be the backbone. You will hold them up. You will not crumble. My first PET scan I found myself in that little doctor room with my head face down on the table taking deep breaths to fight off the anxiety. I actually told my mom and my husband to leave me be, while I trained my mind on the worst case scenario and worked out in my mind how I would pick them up when it hit. Fortunately, my doctor delivered great news that day, but the possibility of bad news lingers behind every corner.
I guess I am writing this blog to express to you all that I am human. I'm not this inspirational hero who is facing death in the face and taking no prisoners. I'm actually scared, crying, and depressed a lot of the time. I want to have a day where I am not too tired of just the thought of dancing around the living room with my son. I want to be an actual wife to my husband, and not have this be a one-sided relationship where he is doing the holding up and the caregiving. I want time to just sit and be and not think about how I should be writing things down for Sam, "just in case." That's where my head is at, and I hate it.
I started back at my therapist (seeing as how the doctor's office kept telling me I needed to see a social worker because of all I had been dealt!). I'm not going to lie, I found myself telling my story and at one point I was just letting out this small, long squeak of a sob. I couldn't help myself. I sat there, completely unveiled as the scared little girl. And you know what, I was relieved to show my true feelings. God damn it, I feel cheated! Why? Why? WHY? And how do I go on?
I tell you how I go on. I go to bed each night and say my prayers. I think about all the blessings I have been bestowed. I kiss my sweet baby goodnight. I look at my husband and thank God he brought him to me. I listen to my parents snoring and I thank God that I was born to them. I think of the friends I have made along the way, the incredible laughs I have shared. And I think of what I have been to people, have I touched their lives? Have I made a difference? Yes, I have. I know that I have been the strength in most of my relationships. I have fought for people, loved people despite their faults, taken in strays, made life easier for others when they have faced tough times. I've been a leader, a confidante, a voice of reason. I thank God for what I have done so far and pray that I am given more time to continue to be me. And it is in those moments, in the quiet of the night as I am talking to God, that I make peace with myself and this journey I am on. Yes, I cry. Yes, I'm scared. But I am not ashamed of who I am or full of regret. I'm living a life that's good and is beyond compare. And that's when I decide that....I've got this.