Freedom and Remission

Today I woke up and looked out the window. The sun was shining....my friend Michelle was working her magic from above. I had a feeling it was going to be a good day. I had my PET scan scheduled for 9:15 a.m. and knew this was going to be the definitive line telling me where I was at in my fight. Was there cancer still in my liver? Or did it totally respond to the chemo? There was a lot of weight in this test, a lot was on the line. I couldn't dwell on it, I just had to put on the brave face and do the test. I would deal with whatever outcome happened. I knew I had the most tremendous support system ready to catch me if I fell. It was go time. Time to find out if all the fight I gave for the past four months had worked.
I gave the nurse my vein and watched as the radioactive dye was pushed into my body. Just another chemical to charge through my body in this journey. I chose to go alone to this test. It is a long one, and I didn't have a follow-up appointment with my doctor. I wanted to do this myself. See myself through and take cancer one on one.
For those of you that aren't familiar with a PET scan, it is somewhat complex. You are injected with radioactive dye (and told you can't love up your child for 24 hours because of it). Then you are put in a dark room, on a reclining chair for an hour while the dye metabolizes in your body. I learned my lesson from the last PET scan. I brought my music and headphones, got under a warm blanket and shut my eyes. I visualized a healthy liver. I said my prayers. I listened to my songs. I prayed. I repeated over and over again "I am healthy. I am cancer-free." I was determined to win this fight.
Finally, the technician came to get me. I was instructed to remove my necklaces and meet him in the room. I looked in the mirror as I took off my Pooh necklace with the quote about how strong and brave I was. This has been a part of me since the beginning of my fight. Then I took off my "You are my sunshine" necklace that I got from the Stella and Dot fundraiser my friends gave me. This is the song I sing to my Sammy every day. He smiles every time. As I took off the necklace I thought of Sam and his blue eyes. He is everything I am fighting for. "I am healthy" I repeated to myself. I had to be.
My body has been achy as of late. My back, my neck both have been bothering me tremendously. I convinced myself this was from becoming active again and riding in a car this weekend for 10 hours. But of course, in the back of my mind, I was worried about metastasis. I shook the thoughts from my head and laid on the board to go into the machine. The technician told me it would be about 17 minutes. He told me to close my eyes and let the machine do the work. I closed my eyes as I was entering the tube and took a deep breath. This was it. Body don't betray me now.
The 17 minutes weren't as long this time. Back in December when I had the first PET scan, it seemed like days that I was laying there. This time, it was almost like I meditated my way through it. When it was over, I put my necklaces back on and prayed for strength. I put my "Welcome Sunshine" hat back on and left Brittonfield, anxious about what I would hear from my doctor later in the day.
Hours dragged on, as I waited for the phone to ring. I couldn't hold my baby boy, who was ecstatic to see me when I came through the door and was refusing to sleep. It was as if he knew that Mommy was waiting on something big. He wanted to come to me, to hold me and let me know it would be ok, but the damn Cancer made that impossible....once again.
I arranged to have a massage to keep my mind occupied and to try and relax in some way. I arrived at the day spa and explained to the masseuse that if my phone rang, I had to take it. I was embarrassed that I was looking like a arrogant brat, but she understood. She worked on my back and my neck and believe me there were more knots than a knotty pine tree in my body. I was somewhat relieved that she felt the knots and could work them out....that they weren't tumors. Everytime my phone made a noise I tensed up and jumped off the table. After about 70 minutes, finally I heard the phone actually ringing. The masseuse handed me the phone and I said, "Wish me luck!" as she walked out of the room. The voice on the other line was my nurse, Amanda. I love Amanda. She's been there for me since the beginning of this journey, handing me tissues when I needed them, laughing at my inappropriate jokes, and patting me on the shoulder whenever I needed some reassurance. Her voice sounded upbeat. She started to tell me the results and I heard the words "There is no new disease." This made me sigh in relief. Then she got to the liver. She explained that the liver was not glowing. Not at all. In a PET scan, organs "glow" if they have cancer cells. Back in December my liver was glowing at a rating of 5. This scan showed no glow.....NO GLOWING! I laid there, shocked and in disbelief. I repeated the words to Amanda. "No glowing?" I couldn't believe it. My liver was clear. No cancer. NO CANCER ANYWHERE! I had beat it!!! My hard work, my positive attitude, the prayers, the love....it had all worked. I was cancer-free. I told Amanda to hug Dr. Cherny for me. I was ecstatic.
I hung up the phone and laid there marveling. Had I really done this? Had my doctor really done this for me? The masseuse came back in, I looked at her and said "I just beat stage IV cancer! I'm living! I did it!" All I could think of was telling my parents, my husband, my sisters, my aunts. I wanted to scream at the top of my lungs. I wanted to squeeze my baby boy....my reason for going on.
I finally got to my car and called up my husband. He answered and I could hear Sam squealing in the background. I asked him to get my parents. I yelled, "I'm in remission! I'm cancer-free!" Bill started crying, my mom was wailing. Sam...still squealing! I drove as fast as I could to get to them. Once home, my mom met me at the door with tears in her eyes and champagne glasses. Bill was holding Sam who kissed me and smiled in delight. Dad came downstairs and said, "Hi baby" then held me and raked back sobs.
I took in the moment. I felt the love. I heard the happiness. I smelled the delight. I relished in the moment. This was my moment. My life was given back to me. I know I didn't fight any harder than anyone else. I had seen cancer destroy lives. I had lost my friend in the past few days due to it. I had woken up this morning determined, and I had received the answer I had prayed for for months. I was cancer-free.
My fight is far from over. I know that this cancer is as aggressive as they come. There is a strong chance it will come back. I have been warned of this. But that doesn't mean I stop living and wait for it to come back. I do anything but. I can make plans now. I can survive and flourish. I have been given a second chance, and I have know doubt that my friend Michelle has a lot to do with it. As do the thousands of prayers that have been said for me, the novenas, the positive vibes, the happy energy sent my way. It has all been an integral part in my role as a "survivor." I am amazed by myself. I am amazed by all of you who have been there for me through the ups and downs of all of this. I will continue to fight, to stay positive, to get my life back. Tomorrow, Sam and I are going to the Livestrong program at the Y. I will meet with other survivors and fighters, I will share my wonderful news. We will all work together to regain our strength, get our lives back, be alive.
When it is all said and done, I will look into my baby boy's eyes and see everything I have been through. I will see the retching, the painful nights, the IVs, the sleepless nights....and it will all be worth it. I know now what life is about and how precious it is. I looked at Sam tonight while everyone was raising their glasses to toast my survival. I whispered to him, "I will be here to dance with you at your wedding." He smiled. I smiled. Thanks to you all, I got this!

Blessings in Disguise

When I was first diagnosed, of course I was livid with God. How could he do this to me? Why was the rug being pulled out from under me yet again? How was I going to deal with this and why was I being punished? Hearing the word "cancer" connected with your name for the first time, conjures up all sorts of dark thoughts and images. Namely the Grim Reaper. (You were all thinking it, I just said it.) I was mad, I was distraught, I was numb....all of those things. I can't really describe it, other than to say that it was like having the wind knocked out of you. It hurt, but you couldn't do anything about it, you were frozen, and scared, waiting for time to start moving again, the air to come back to your lungs. For you to be normal again...however, being "normal" again, is not really an option anymore.
My first encounter with the cancer, there was no beauty to it. I couldn't see past the mortality of it, the doom and gloom of forever facing a disease. There was nothing to be thankful for, in my mind. I was facing a terminal illness at the prime of my life. How could there be any silver lining in that?
That first doctor appointment was a chaotic whirlwind of terms and treatments. I left with a week full of dates with oncologists, nurse practitioners, surgeons, and the chemo needle. I tried to keep my wits about me, tried to keep the positivity in check, put a brave face on, and put my best foot forward. I had family, old friends, and new co-workers rallying around me telling me I was going to win this battle, that they were in it for the long-haul with me.
I began writing this blog in late December, around the time of my second round of chemo. The whirlwind had died down, I understood what chemo was going to be like, and I had settled into my identity as a person with cancer. My hair was starting to fall out with a vengeance. And although I had such a tremendous support system, I couldn't help but feel alone at times and angry with God. People, with the best of intentions, just couldn't understand how I felt inside. Even if they had lost a loved one to this dreaded disease, it wasn't the same as living with it, seeing it in the mirror every day, waking up with a smile on your face, only to have that lump in your stomach return when you realized you were still stricken. So try as my sisters, my parents, and my husband might, they were never going to identify with me. It just wasn't possible.
I started the blog as my outlet. I always liked to write and had been told I actually had some ability, so I thought that maybe it would be cathartic for me in some way. I have always been one of those people that never truly gets over something unless I say it out loud or write it down. One thing I told myself, I was going to be honest. I would be the Kim Kardashian of cancer. This blog was going to be honest and raw, with bits of humor interspersed, because that is how I am as a person. No, I'm probably not going to tell you that you look fat in that outfit, but I will tell you if I think you are headed down the wrong path. That was my idea behind the blog, maybe I could share my story and help other young people with cancer to deal. Maybe I could make myself laugh at my journey, or show people the reality of cancer. Maybe it would help me rally more support or make some sense for caregivers. I don't know. All I know is that my blog turned into a blessing from the first stroke of the keys.
In the darkness of this diagnosis, I was able to find some rays of light, and some of the camaraderie I was looking for. People from all over started reaching out and responding to me, my words hit a chord in some, or opened the eyes of others. I wasn't asking for sympathy with my blog, or even a pat on the back. What I wanted was to see I wasn't alone. I got my answer late one night after writing a few entries.
Her name was Michelle, and she wrote me on Facebook. She said, "I hope you don't think I'm a stalker...." which made me laugh. I had never seen her name before, and continued to read her message wondering why on Earth this woman with long blond hair and a sunny smile was writing me at such an hour. Michelle, it turns out, was looking for a comrade too. At 48, she had been diagnosed in mid-December with stage IV cancer. She had been turned onto my blog by one of my high school friends, Jill, who worked with her. She wrote that she stayed up late one night reading my entries and marveling at all we had in common. Her journey had many of the same bumps and turns that mine had had. As I sat reading her message that night, I felt a strange connection to this woman with the long blond hair. We were both facing the fight of our lives and determined to win.
We wrote back and forth for while, not meeting each other due to our chemo schedules and then our bad days overlapped the other's good days. Finally, when I was at HemOc for a round of hydration because I didn't take care of myself, she was there for bloodwork. I was in a private room, quite out of it, with my sister Kathryn taking care of me. Michelle came to our room and opened the curtain as I was in and out of sleep. She smiled that smile, and in true Michelle form, did not want to bother me if I was sleeping and not feeling well. I, being groggy, wasn't the most delightful person in that moment, but I was glad to finally see her in the flesh. And true to form again, she was more concerned about me, than she was about herself and her own scans that she was waiting on.
So began a friendship with a person that "got" me. Finally, I had someone to talk to about my fears, my anxieties...my frustrations. Michelle was on the cancer train with me and was holding my hand through it. We both were going to Johns Hopkins, days apart, for second opinions. She had a grandson that was close in age to Sammy, so we both had something to fight for. Yes, she was older, but she was still young....too young to be facing this ordeal. We felt a kinship to one another and I was so glad to have her in my corner.
We were able to meet at Jill's house one Saturday and talk for a few hours. I got to know more about her family and what had brought her here to this moment. She talked about her daughter, how she had lived on the North Side for many years and had recently moved in with her daughter right up the street from my house! It was so strange how our lives were somewhat intertwined. I watched as she talked, she still had the long blond hair and still smiled as she spoke of things. I was wearing a scarf on my head, was feeling bloated from chemo, and not a stitch of makeup was on my face. But despite all this, I felt comfortable around her. Like she was an old friend. She was leaving to meet up with old friends for dinner that night and was so excited. It was the last time I would see Michelle outside of a hospital setting.
Unfortunately, Michelle's journey became riddled with obstacles. I would get "good" news about my cancer, and it seemed that she was running into one road block after another. We were able to see each other at Hopkins, where she had to be admitted. I was able to meet her sister and sit and talk for a while before my appointment. I cried after leaving her room that day because I saw the evil that cancer was capable of in that moment. She struggled to breath, and if I could have done anything, anything, to make her more comfortable, I would have done it in a heartbeat. It was unfair. We were both fighting just as hard as the other. In fact, what I admired about Michelle, is she had no fear. I wrote her once that I was having terrible anxiety about everything and that I was depressed. She wrote me back that she, despite having fluid on her lungs, and going through some pretty awful procedures, was still not anxious. She wasn't going to let fear stop her. She didn't have time or energy for it, and I saw in her that I shouldn't let fear overtake me either. It was just wasted energy.
In March, when my cousin had her baby, I was at the hospital where Michelle had been transferred. Despite my reservations, I went to see her on the oncology floor that day. It was hard being on that floor, where I had stayed twice before. It's like you can smell the cancer when you get off the elevator. The sterility of the hallways, the blankness of the rooms, seeing family members with worried looks on their faces....it makes for a tough walk, especially when you are carrying the big "C" on your back. But I pushed my own fears aside to see my friend. I wanted to see her face, hear her voice, make sure she was still fighting.
I went in her room, which was like an ice box (as she wanted it) and was met with a movie star. I say that because Michelle was wearing some big Jackie O. sunglasses when I walked in. It made us both laugh and she was wearing them because the new chemo she was on made her sensitive to the light from the wall of windows in her room. It was a private room, thank goodness, because I could tell you some stories about roomies up there that would make your head spin. She was thinner, but her breathing was better, which made me relieved. She was funny and bossier this time and had become more assertive since her time at Hopkins. We spoke about our little boys and how her treatment had changed. She seemed less vulnerable and things were looking up. Her chemo was definitely causing her some horrible side effects....but it was working. She had had some setbacks, but there was still hope in her voice. And as always, she was more concerned about me and how I was doing with my treatments. I blew her a kiss before I walked out the door, and left feeling like things were on track to get better. That we would be looking back on this in years to come and laughing at her movie star hospital stay.
This cancer diagnosis wasn't all dark clouds and scary thoughts. There have been blessings on my journey, and Michelle's friendship was one such blessing. She came into my life when I needed her, when I felt that no one in the world was feeling what I was feeling. Michelle reached out to me when I needed her most, and held my hand through the cancer labyrinth. Michelle did leave the hospital, for one day, and I was able to text her how happy I was for her. She sent me a heart back.
On Thursday night, I was sitting in Maryland on my sister's couch and could not sleep for the life of me. Finally at around 2:30 a.m., I laid down and was able to rest. At 7 a.m., Friday, my phone was ringing and it was Jill. My heart sunk to my feet. I knew what was awaiting me on the other end of the line. "Michelle passed early this morning." I hung up, and couldn't help feeling like I did that day of my diagnosis....there was no air, I could not think, the shock numbed me from head to toe. I waited for my lungs to fill with air again, for my ability to speak to return. I looked at my mom and said, "She's gone." I blinked back tears and forced myself not to cry. Michelle would NOT want me to cry. She would want me to hold my baby, enjoy my trip, and keep fighting the good fight. So I did what she wanted me to do. I went on with the trip, I spoke of her to my family, I dealt with it quietly in my own head.
The night before we left for Syracuse, I again laid awake...unable to sleep. I went onto Facebook, and looked up that first email she sent me. As I read it, tears began to stream down my face....by the end of reading all of our emails, I was sobbing into my pillow. Damn you, cancer! You ripped her away from her beautiful daughter, her doting husband, her loving sisters, and her precious grandchild. Why? WHY? How can one with so much hope and life left to live be taken so easily and so devastatingly? Where was the fairness in that? I couldn't answer my questions. No one can. Cancer hurts you and it hurts the ones you love. Yes, it brings you blessings in terms of second chances, living in the moment, and making new friends. But at the end of the day, cancer has an agenda...and it isn't a happy one. No one knows why some escape its grasp entirely, or break free of its clutches when all odds are against them. No one knows why it picks who it picks. Cancer is a beast that cannot be tamed no matter how bright your smile and how much hope you have. Knowing that though, doesn't make losing someone to cancer any easier.
Cancer gave me a friendship, however, that I will never forget. A woman whose compassion was unmatched, and whose bravery knew no bounds. I entered her calling hours with a brave face tonight, shaved head unveiled for all to see because she would have wanted me to show everyone and cancer that I am not giving up. Her death gives me more reason to fight, more drive to show cancer who's boss, and now I know I have her right by my side. I knew she was there today because I didn't shed any tears. I even wore waterproof mascara because I was sure the floodgates were going to open. But it was as if she was putting her hand on my shoulder and introducing me to her family and making me be strong.
Now I sit in the quiet of my house, and once again, tears are streaming down my face. I have a PET scan this week, and I'm scared. My body hurts, I've started a new treatment, I ended chemo, and I have to meet with surgeons about a hysterectomy. These are all things I would have shared with my friend, and no doubt, she would have sent me encouraging words and helped me through it no matter what the outcome. She would be so happy to know that Marshall and Sammy are going to have a play date at some point, and that Doreen is actually going to be working with Bill next year. She's not here to hold my hand anymore, but her memory will live on, you can be sure of that. When I go on Wednesday for my scan, I will feel her beside me. If the sun is shining, I know she will be smiling and wearing her sunglasses, and I will smile and whisper, "We got this."

April Fools Brings A New Journey

I have finally finished chemotherapy and I am on the precipice of finding out what the next direction in this journey will be. Has the cancer metastasized further or has the chemo done it's job and eradicated the cancer and rendered me cancer-free? Can I allow myself to hope for that? To pray for that miracle? I think I can, and I feel that it will be gone. Tuesday holds a lot weight for me and my family. We are all going through our days as if nothing has changed, but in the back of all of our minds April 1 is beckoning us. These scans are different from all of the rest because they are the game-changer.
The chemo that I was on is not sustainable any longer. It is an aggressive course of treatment that strips your body to its core, killing off everything in its path. The result is a body that is weak, fatigued, a shell of itself. I've gone through blood transfusions, been so low on platelets that I could have bled to death from a fall, been dehydrated and nearly fainted, and felt beaten and bruised from shots. Chemo has been a vicious cycle of bloating, exhaustion, pain, and fear. Where does the fear come from? The fear is from the not-knowing. Are you allowing them to intentionally poison you, only to have it not work? Are you weakening yourself only to have yourself become susceptible to other illnesses? If I were to continue with this chemo, we would start to defeat the purpose of it. We have come to an impasse. I have to have scans on April 1 and blood work to determine where we go from here.
I have given my body up to this treatment, in hopes that this will heal me, that I have a chance for a cure. I bravely walked into HemOc every three weeks, awaiting my hours of treatment, feeling that this was my way of knowing that I was fighting the good fight. After 6 rounds, I have learned so much about myself and my family and friends. Countless people have offered to take me to chemo, and for that I am thankful. But I only allowed a few close people to be there with me, for many reasons. Chemo is no walk in the park. It's hours long, there are needles involved, poison is hung, and I am surrounded by people who are just as vulnerable as me, if not worse off. Many people that I would have liked to have been there with me, were not allowed. Mainly my best friend, Katie, because she is pregnant. Can't have her around that stuff! But I always chose those that were going to make me laugh, if I knew I would be up for it. Or those that would simply sit there and let me sleep, if it was my second or third day. Mom always went with me on my last day. She gave me warm blankets, kept me hydrated, and let me sleep. Others, like Jimmy, Jimbo and Mary came on long days to make me laugh. Jimmy even said the last time that he had a story that would have to wait until my first bag was hung. And he got used to the needles, so the nurses tolerated him! Jimbo forgot his iPad once, which scared the crap out of him. Mary brought her fellow nurses candy canes and made me last day of chemo signs! Kathryn traveled up here several times to be here for me. It was like having a mini-mom with me. Warm blankets, lots of sleeping, and she kept me fed. Aunt Nancy and Aunt Holly were awesome. They brought me doughnuts, juice, and drove me through a blizzard to get me there. Elizabeth came and cracked me up once. And my husband was there most weeks to hold my hand. He surprised me on my last day with a beautiful bouquet of flowers. As Mary said, "you got yourself a keeper, Jod." and she is right. These 6 rounds have been about me, and my close friends and family have been there to make it more bearable, to try and do their part to make it better for me. Some of them put their own fears aside, to be there. For that I am eternally thankful.
I know when I told people back in November that I had Cancer it was a shock to most if not all of them. I called some, texted others, and shared it on my facebook page. Many family and friends were on my doorstep within minutes. Some hung up the phone in a daze, unable to comprehend what I had said. Others never showed, never called or fell of the face of the earth. I can only chalk this up to their own fears. Hearing that one of your good friends, that you've known for so much of your life, who has shared both ups and downs with you, has a terminal illness has got to be scary. I think, or rather I know, that my diagnosis rocked everyone's world. I was young, very much alive, and just became a new mom. Life doesn't go in that order. You don't get everything you want, only to have it swiped cruelly away. But I am proof, that yes, yes, life can throw you a curveball.
I'm not harboring anger toward anyone, that is such a fruitless way to be especially when I am dealing with this. If anything, I am admiring those who have stepped up to the plate, have taken the opportunity to put their fears and lives on the backburner, to be there for me to unselfishly take the time out their days to simply send me a text or a Facebook post, to let me know they are thinking of me. Others are pulling out all the stops and planning an amazing benefit for us, that I can't even begin to comprehend. People are putting all their extra time and energy into this, to make sure my family is comfortable and can focus on the fight ahead. How do you thank people for that? These people have been my army, the people that have literally held me up, made me realize each and every day that I have so much to fight for, and haven't allowed me to give up because they can't envision a world without me in it.
Did everyone come around all at once? No. Some needed to come to terms with what I was facing, to have their own cry about me, to grasp what it was that was happening, before they could join my team. Others have had to have people knock some sense into them. To be told the gravity of the situation and to get their heads out of their asses, for lack of a better term. One thing is for sure, I don't have the time or energy to coax people out of their fears. One of my aunts told me, that this is a time that is all about me. I have to be selfish in this moment, take care of me and do all I can to survive, focus on a healthy me and if that means losing touch with others who can't seem to get it, than so be it.
Does it make me sad to see some that either just don't get it, or can't get out of their own way? Yes. I miss them. I would have liked to see their faces during this battle, heard their voices....known that they cared. But I can't force anyone out of their comfort zone. I don't know how it feels to see your family or good friend facing death in the face at such a young age. Does it make you ache inside every morning when it hits you? Does it make you cry at random moments when a memory flashes before your eyes? Does it make you sick to your stomach, and want to throw up at the thought of what they are going through? I think it does. I think it is very similar to how I feel day in and day out. Real family, real friends their connection to you allows them to feel your pain and know your plight. They don't let petty arguments, silly feuds and stubbornness get the best of them. They reach out, they don't ignore you, they make peace. Whether that be coming to your house after not seeing you in over a year (at other people's coaxing) or simply a phone call, text or email saying "How are you doing?" That's what real friendship and family is about.
I'd like to think that with cancer, the gloves came off. Bygones became bygones. Forgiveness and love was more important than egos and fears. For the most part, that has been the case. However, there are some that still don't get it, and never will. At this point in my journey, I have no regrets. Everyone I want to have in my corner is there. The ones that count, who wish they could take this all away, they have reached out, taken my hand either virtually or in reality, and told me what my diagnosis has meant to them.
My cancer has made some people grow up. It has made them bury hatchets, open doors they never opened, brought old friends back into my life. But it hasn't mended every fence, and that is ok. If you want what's best for me and for my family, you will be here. Negativity is not allowed in this house. Those that I feel I owe an apology to, have gotten it. I've come to a point in this journey where I am done worrying and being the people-pleaser. I'm taking my aunt's advice, and making it all about me.
My sister and husband both told me this weekend that they wished they had the kind of friends I have. They said that they don't know that anyone in their lives would step up to the plate as my friends have. I've always known I was blessed with some of the best of friends. Unfortunately they have had the opportunity to show me how much they love me. I wish it didn't take cancer to show me that.
I would be remiss not to mention my cousins in this moment. There is a saying that your cousins are the first friends you make, and that couldn't be more true for me. Pauly, Tony, Adam, Missy, JB and Jill were my first friends and have remained my most loyal of friends. Have our lives always traveled the same path and have we spent tons of time together in our adult lives? No, we each have our own things going on. However, this diagnosis hit them all hard, and I can tell. Especially my cousins Tony and Paul. We have been a part of eachother's lives since the moment we were born. Every Sunday we were together, we went to school together, and spent summers swimming and growing up together. Now, I get text messages from them, sometimes in my weakest moments, and it brings a smile to my face. I can't explain it, but every interaction with them makes me think of our youth, how far we have come, and how much we mean to eachother. We were our first friends. And one of us is suffering, so we rally. Our grandma would be proud of us, for being there for one another. We are the family she wanted us to be.
It is late, and I am restless thinking of April 1. I hope my body does not "trick me" this April Fools Day. My husband and I will hold our breath that day, our hearts will pound in our chest as we await the doctor and his news. When he speaks, I know my ears will burn, my palms will sweat, and I will clench my teeth in anticipation. All the while I will be picturing my baby boy in my head, and trying to keep the focus on him and hear the positive in whatever is said. I know no matter what, I will not give up because I have so many friends and family who believe in me.
I feel there are good things on the horizon. I envision a future that is bright. I see myself holding Sam's hand for a long time to come. I believe that "We got this!"

Pity Me No More, Positivity

I've been struggling with balance this week. I'm feeling tugged in many directions. On the one side, I feel good, better than I have. You can't feel my liver anymore, I have my humor back, and want to tackle new things. Bill and I went to the gym, something I haven't done in over a year. Yes, I was one of those sloppy pregnant ladies who enjoyed indulgence and little activity. After the baby came, the whirlwind of sickness took over our house and it's taken me months to seem back to normal. I want my body back or at least some semblance of it.
At the gym, Bill warned me not to overdo it. I assured mom and dad, I wouldn't overdo it. (We all know, I would overdo it). Being back on the machine Mary Suehs and I affectionately call The Monster, I was determined to get the healthy me back. I was wearing a do-rag as not to scare the other patrons, my staple yoga pants, and a new gym shirt (have to have a new shirt to get you through the door ladies). I climbed on the machine and slowly rocked my way into some exercise. I let my music just flow and take me into a zone, trying to remember what it was like to be healthy and in-tune with your body. The first five minutes weren't that bad, but I was determined to do 30 minutes. 30 minutes would make me feel like I accomplished something the BC Jodie could do. I wanted desperately to be her again, in charge and in control. Probably wasn't my brightest idea.
By the time Bill joined me next to my machine, I had 3 minutes left....and they were the longest three minutes of my life! Longer than that last .2 miles of a marathon. My body was quickly assuring me that we weren't ready for this, that this wasn't a matter of adding a little oil to the Tin Man and cranking away. I have had months of poison cycling through my body. My blood cells have been ravaged, my muscles deteriorating. My hips have been going out of joint at times due to lack of exertion. Who had I become? There was a time when I could do 2 hours on The Monster! And here I was heavily panting, my face tomato red, and feet aching. I felt light-headed and defeated when I got off the machine. I sat in the locker room and removed my do-rag, letting my prickly, white hair breathe again. I changed my clothes and into my HOA of CNY long-sleeve. All reminders of what I was dealing with unlike most people in that gym. I was conquering cancer and getting my life back. I was showing cancer that I wasn't going down without a fight.
I held my head high as I left, loving that I had done this. I had made my first step toward recovery. Full of determination to become a fighter on this last leg of my cancer journey. It was short lived. Your cancer body is nothing like your healthy body. It takes patience and care to not overdo so that you don't end up paying for it later. I woke up Monday morning with aching feet and my neck and back sore as could be. I know I am older too, and I've had a baby, so things are not going to snap back into place, but it was somewhat of a shock to me that I was in so much pain....from an elliptical. The fatigue was the worst. I could have stayed in bed all day....in fact I think I did stay in bed all day. And it wasn't just a one day recovery, it rolled into the next day too. This led to me becoming an emotional mess. I was down, I was tired, I was sick of being sick.
Cancer, you see, has a way of affecting everything in your life...good and bad. As my husband said, "You can't just have a neck ache." And he's right, any bruise, pain, blood, stomach ache, nausea, headache, fever....you name it, your mind races. Every night I lay in bed and feel my liver. Is it different from yesterday? Different from November? Or is it worse? Was this ridge there before? Should I have drank more green drinks, should I have more water, did I eat something that wrecked all my progress? Your mind plays through so many scenarios in those dark hours alone and quiet. I enjoy the peace of being able to think my thoughts on my own, for not seemingly bothering anyone else with my "pity party." But I often start thinking of what cancer has taken from me, but also from my loved ones. I'm unable to lead at this point, I need help more than I ever have. They can't depend on me as they have in the past. I can't be up with Sam all night long, or else I am in bed all the next day. I can't work because my energy is all being put toward this fight, and so I am not a breadwinner anymore. My husband, bless his heart, still loves all of me, and therefore wants to be intimate with me....and cancer has taken that from me. The worst was the other night when I did attempt to show my husband affection, only to break down in tears afterward, sobbing, because we will never make a baby again. Cancer, you took that from me. I know that I am blessed with Sam, but to have that choice, that decision ripped away from you, makes me angry and it shows you just how unfair this disease can be.
I found myself up and begging God that if I can't have any more babies, please let me be the mother to Sam that he needs. Please don't rip me away from him. There is so much I have to teach him, so much I want to love him through, so much I want to learn from him. I know you aren't supposed to beg or barter with God, but when your emotions take over, it's hard not to.
In one of these emotionally charged moments, I took to the Internet to search a girl I had seen on Say Yes to the Dress a few years ago. Her story was calling out to me that night. I didn't know why, but I had to find her. Being the sleuth that I am, I was reading her blog in no time. She was named Margo, and had been battling cervical cancer when she was on the show, picking out her wedding dress. She was a sweet, bubbly girl, at only 24 who was looking forward to finding a dress with her bald head and all and marrying her best friend. She was so vibrant and young, I remember thinking. To my shock, and to many others, the show ended with her passing a month after her wedding.
Now in this place that I am in, I wanted to revisit her story, see how she thought, read her blog and for what reason? I don't know. I just felt compelled. I mean, I am writing a blog, and I wanted to see if we were the same...if we were on similar journeys.
I found her blog and started from the end and worked backwards. She was very sick at the end. Her leg was swollen, she  had had two surgeries, radiation, and finished chemo. I got stuck there. I'm finishing chemo this week. She was preparing for her scans, I am preparing for my scans. We both were playing the waiting game. I can't explain it to you unless you live through it. You can be in a place of joy and laughter and then WHAM! It slams you in the heart that a few hours will determine if you take the light road or the dark road. Will the cancer metastasize? Are you having more aches and pains? Is that a regular cough or are your lungs in danger? Do I feel something in my breast? All these questions race through your head as you walk a tightrope trying not to lose your mind and remain catatonic in your room. You will not let Cancer take everything, you MUST live in these weeks leading up to scans. You must breathe. You must love the tiny moments, no matter how hard it is to push the thoughts from your head. You have to remain positive.
Believe me positivity does not come easily to me. I have never lived in the moment and let things just be spontaneous. Anxiety sits on my back and pushes every one of my buttons. It has since I was a little girl. I've talked about the ulcers, the sleepless nights, the worries about my body, my face, my career, my loved ones. Now add your own life to that. It's enough to make you even more sick. So what do you do? Do you let the anxiety pile on with the Cancer and make you into a hermit? Or do you put it in a compartment of your mind and soldier on? The only way you can turn the anxiety off is through positivity. And I'm not talking about the "Aw shucks, Jodie, hang in there, you can do this." I mean the positivity that comes from inside yourself, the little positive moments that make you smile in a day, even in the darkest of moments, so that you can give this fight your all. If you let the negativity in, it's a slippery slope to giving up. And believe me, there are days when I want to give up. Not because of the pain, the chemo, the fatigue....but because of the loss of the old Jodie. I want to be her again, and I never really can be. I've been branded a member of the Cancer club at this point, and I can't go back. This diagnosis has shaped me, made me stronger, made me have a clearer sense of purpose, but robbed me of the carefree delight I had in having a beer, and laughing until my sides hurt at just ridiculousness. There is now a seriousness to me, the lightness is gone. And I don't know if it will ever come back.
That lightness can only come back if I let the positivity stay. If I pocket all the smiles of my baby, the laughter when he's tickled, the feeling of my husband's hand clasped around mine at night, the long hug from my Dad when I am leaving for chemo...letting me know he's there, my mom's hand wiping away my tears when I just breakdown, the times when my sisters call just to tell me they love me. I put that positivity in my back pocket and when the pity party starts, I open that pocket up and let those memories, that love flow. It makes me feel less alone, less scared of what is to come. Slowly but surely, the darkness drifts away, and I find myself ready to fight. Not because I am this all powerful, super human. I am anything but. I am scared, and mourning the life I had BC. But I have to force myself to lose the anxiety and wonder, allow myself to wonder, of a bright future. I have to think of this as a new beginning. It will be rewritten very differently from the version my 10-year-old self had (thank god in many ways for that!), however, it is far from over. My hair will be shorter, my body scarred in many ways, there may be more chemo in the future, I will have hot flashes from the medication, and other twists and turns. However, I will also ALWAYS have a reason to fight, a reason to have faith, a reason to believe. God hasn't given me any other reason to not believe at this point. I have been given the gift of redefining who I am and why I am on this earth. I will not let the negativity in and I will not give up. I can't. I'm not done yet. I am a force to be reckoned with Cancer, and I am just getting started. Don't worry team, I've got this!

You're Never Too Old to Come Home....

First off, I'm alive and well. I know it has been a long time since I posted last. As one of my oncology nurses said, "Jodie it's been since February 21...it's now MARCH!" My cousin, Pauly, summed it up perfectly when he said, oh so eloquently, that he was telling people I wasn't writing because "Dude, you're doing good, right?" And yes, he was correct. I've been busy soaking up the limited sunshine was have had, taking Sam out to "see the light" and smell the spring air. I found that I had an extra spring in my step, my color wasn't so sallow, my ability to get out of bed was just a little easier. Then of course, a blizzard hit! And with the blizzard came pain and bloodwork and x-rays on my end. I guess my medical journey is like a page out of the weather forecast for Syracuse, NY. All sunshine and roses one day, then gusty winds and white outs the next. That's what a cancer diagnosis is, I suppose.
These past few weeks have been mostly great. I felt more like myself than I had in a while. My energy seemed to come back and I spent a lot of my day laughing and playing with Sammy. He's getting up on all fours now, so it is a matter of days, not weeks, before he starts crawling. Oh boy. Life has been good. We visited with people and took walks, in my weak attempt to "get back in shape." I joke and say that Sammy takes me on lunch dates and shopping trips....he's quite the shopper!
Of course, in having these big adventure days, I didn't often take into account how the chemo was going to affect me. After a long day of feeling like myself, I would be knocked on my butt and in bed all day completely fatigued. Then I would beat myself up for not being a mommy on those days and for being tired. I would have to remind myself that this was my body's reaction to chemo and not me being a lazy lump. But it is hard to let yourself off the hook at times. Especially when you go a day feeling almost as if you are cancer-free! Getting knocked down again, just serves as a torturous reminder that your body is in the fight of its life.
Last night was a bad night. I had been battling what felt like a stiff neck or pulled muscle all day. I attributed it to lugging 23 lb Sammy around town. (Seriously, you put him in one of those carriers and you get yourself a nice arms workout!) As the night progressed, the stiffness and muscle spasms became worse. Now, because my cancer is in my liver, I can't just toss back some drugs and sleep it off. I have to be careful what I take because of that and also because I have had some bleeding, so Aleve and blood thinners are a no-no too. I've become the anti-med patient at this point, scared of what may happen if I try to take something. I feel like I have made so much progress with my liver (the nurse practitioner agreed with me the other day when she examined me....it is NORMAL SIZE now, which is HUGE!). I don't want to take two steps back and start tearing away at the progress I have made. And I don't want to end up back in the hospital with bleeding again because as good as I look in a hospital gown, it ain't worth it.
Well, stupid me didn't take anything and tried to go to bed. I took my sleeping pill and sort of sighed myself to sleep because it wasn't exactly a pain-free arrangement. I figured my pill would knock me out and I would be ok. It did, for about 2 hours. Then I woke up and couldn't lift my head off the pillow. I was scared because the pain was so intense, it took my breath away. I've thrown out my back before and experienced similar pain then, but when you have cancer, everything seems ten times worse.
I woke my mom up as I stood over her stuck in a cockeyed position. I couldn't move my head, it hurt so much I was crying, and I needed my mom. She helped me down the stairs, set up a bed on the couch and went to work. Cupboards were opening, she was shuffling around, the microwave was buzzing, and pill bottles were rattling....all at 1 a.m., and she has to go to work at 5. All the while I was laying on my pillows with tears streaming down my face. My head had already gone to that dark place. What if the cancer had metastasized to my bones? Was this how it would feel? If so, it was agony. Or what if it was meningitis? My immune system is compromised after all, and it hurt to touch my chin to my chest and I had had a headache the night before (oh the joys of being a nurse's kid who knows too much!). As my mom put moist heat under my head along with a heating pad she had in her car (god knows why), I shakily lifted my head and sucked in a deep breath because of the pain. When I laid down and let the air out, I sobbed to her "Promise me it hasn't metastasized to my bones! Promise me!" How awful of me to put my mom in that position! But she is my mom, and always has taken care of me. I needed her to tell me it was going to be ok, that I was not going down a darker road. She couldn't promise me anything. All she could say was that it appeared to be muscular and that was a good sign. I told her to go upstairs and sleep with my baby. She insisted she stay downstairs and sleep with her "baby." Mom didn't leave my side. She continued to make sure I had heat on my neck and dried my tears. I know, if I had asked, she would have scooped me up and rocked me to sleep, even though we are the same size nowadays. Because she is a mom, first and foremost.
The beauty of my parents is that they put their kids first....always have. My mother called in sick because she wanted to be by my side when I went to the doctor and to hold my hand if they did find something. She wanted to keep me comfortable and checked on me all morning long as I lay in bed suffering in pain. She wanted to quiet my fears, as best she could.
My dad, for as tough and gruff as he looks, can't stand to see me in pain. He and my mother are a team in these situations. Dad took on Sammy, and I could rest assured listening to the two of them spitting at eachother and Sam laughing. He was feeding him, playing with him, making sure I didn't worry. He and mom discussed what they should do for me, when they should call the doctor and how I would get there. They both have been worn down by this cancer diagnosis. My father's body is reacting against it and he developed a stress rash that he has to take steroids for in order to function. Mom is so beat. She is getting up at night with Sammy so I can rest, then going to work on her feet for 10 hours a day and sometimes the weekends too. They put me first and have shown me what parents are supposed to do, how to be their support when they are weak. I know that both of them would walk through fire for me. I'm reassured on a daily basis by my mom that if she could take on my suffering, instead of me, that she would.
That's a parent's job, and their love and support has shown me just how much I need to survive for Sammy. I ache at the thought of not getting to pick up the pieces of his broken heart some day, or not being able to sleep next to him when he has a nightmare, or kissing his boo-boos like only a mom can do when he falls down. Moms and Dads are there to pull you up when you fall, give you a reassuring hug, and send you back out to figure out the world on your own. But they are always there in the background if you need them.
Now at 35 years old, I need my parents just as much as I did when I was five. They are the reason I am winning this fight, plain and simple. They have opened their home to us, fed us, cried with us, and rejoiced with us. Today, as I sat in that office waiting on the results of my scan, I looked at my mom. She looked tired, scared, but ready to catch me if I fell. She is as dependable as they come. She's my rock, just as her mother was her rock to her. Her hands have aged, but they are the same soft hands that dried my tears as a child, and held me when I broke down and needed a hug. Those same hands now clasp mine in the quiet moments...just to reassure me she is there.
My dad, he just got up and made me soup and rice for dinner, after I slept all day. He watched over me as I ate it, making sure I got the potassium I needed and ate my vegetables. Then he hugged me hard before he went to bed and told me to keep on fighting. That's what a Dad does. He makes you feel safe and supported no matter what your age.
What I guess I have learned through the twists and turns of this journey is you are never too old to come home. My parents have literally carried me through this hard time, protecting me, holding me and assuring their grandson that he is loved and cared for no matter what. So even though I may roll my eyes when my mom chases me around with a water bottle telling me to "Drink!" or when my dad makes me eat all the spinach because I need to fix my anemia, I still love them for what they are doing. They are putting me first, as they always have, and shooting the moon to make sure I win this fight.
Every night while I say my prayers in bed, I thank God for being born to these two people. I couldn't imagine not having their love and support through all of this. I don't know that I would be surviving without it. But I also pray for them because I don't know that they know how much they mean to me and my sisters. I pray that my dad stop smoking and drinking because if you were to see Sammy's face light up when he comes in the room, you would want him to be around forever too. I understand that cigarettes are like heroin and drinking numbs the pain and anxiety of what is going on, but we need you Dad. I need you, Sam needs you. And Mom, I pray that she take care of herself for once, instead of everyone else. Putting yourself on the backburner mom, is not the answer. Stop drinking the damn diet soda. You deserve to live a long happy life. I need you, Sam needs you.
I'm happy to report that I don't have meningitis and my x-rays showed no mets to my bones. A huge sigh of relief on all our parts.  But that didn't mean that my parents stopped caring. I was given time to rest and relax once I got home, to cry a little and be by myself. Mom told me she wished she could take it all away. Dad told me to keep on getting better. All the while, they were taking care of Sam, Bill and me. The thing is, Mom and Dad, you are taking it all away and making me get better. If it weren't for you, I would be struggling to stay afloat and feeling alone. You have shown me how to be for Sam and what being a parent is all about. Thank you for carrying me and loving me through all of this. Having you both on my side, I know, we got this.

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.