A Zebra Finds Some Hope

I'm a zebra. I found this out a while ago when researching my cancer. Everyone knows that pink ribbons are breast cancer supporters. Purple is Alzheimer's. Yellow for military. There are all sorts of colors representing all sorts of groups. Leave it to me to have the "animal print" ribbon. Neuroendocrine cancers are represented by the stripes of the zebra. Foolish me, I thought that this was someone's idea after running out of options and making a fashion statement. However, after reading an article by a specialist at Roswell, I now understand why we are zebras.
I always knew my cancer was unique, especially because of its presentation in my breast. However, I didn't realize that neuroendocrine tumors only make up about 2% of the cancer world. Us zebras, you can't put us in a box either. People ask me all the time, "Well, what cancer do you have anyway?" When I tell them that it is neuroendocrine small cell carcinoma, that's primary location was the breast and then metastases to the liver, they immediately think "OH you have breast cancer! Save the boobies!" But that couldn't be further from the case. These tumors are so misunderstood, in fact, that even Johns Hopkins sent me to the wrong specialist. They again tried to put me in the same box as breast cancer. Not the case. In fact, if anything, my cancer is more like a lung cancer....however, no sign of it in my lungs THANKS BE TO GOD! But, then you add in that my cancer tests estrogen positive, and again people think "breast cancer." So you can imagine how confusing it has been walking the tightrope of diagnosis these past five months. I'm often face to face with doctors who are known as the most intelligent people in their field, and they are dumbfounded. I've sat in a doctor's office and watched a specialist actually Google my condition. Yes, Google. Now, we all know me, and I have always been unique, but this is one time where I would love to be run-of-the-mill, average, vanilla...bland even. No such luck. I am relegated to the zebra preserve.
I've recently reached out to my fellow zebras. I found a very small group on Facebook of people dealing with this cancer. I'm not going to lie. Some of the stories are devastating. There is so little known about our cancer, and there are so few of us...and then you top it off with mine having such an odd presentation, I feel like a leper in the cancer world! The group is composed mainly of caregivers and relatives of people being devastated by this cancer. There are a handful of people fighting along with me. It's hard, for me at least, to read the posts of the caregivers. They talk of the scary stuff, the poor prognosis, the debilitating surgeries their loved ones have endured. The crazy aggressiveness of this cancer is what gets them the most. I understand that they too need an outlet for their fears and frustrations, but caregivers and fighters shouldn't be lumped in the same group. I don't want to hear about the horrors. I want to stay positive, earn my zebra stripes by fighting with my all! There are a couple of people that I can identify with in the group. One, Susan, is a lot like me. She is stabilized currently and remains positive in her posts. She praises God for each day, and reaches out to support anyone who posts in the forum. I find comfort in Susan. I've needed to find comfort in someone who is fighting the same fight. I've needed that camaraderie. You see, once my chemo ended, I felt like I was slacking off on my fighting. I felt like without the chemo, I was basically sitting around waiting for things to spread, for the cancer to get comfortable in my body while I wasn't warding it off. I knew that my body could no longer sustain chemo. It just wasn't an option, but I was worried. I held my breath when I got my PET scan, knowing the aggressive nature of this cancer, and worrying that I was going to have glowing spots. I got the news I hoped for, that I was stabilized. Phew. Now I had to put my faith and hope in the hands of my doctors and the treatment plan.
I did put my faith in them, but there was a nagging feeling in my gut that I needed to do my part to understand my diagnosis. When I was diagnosed in November, it was such a whirlwind of appointments, biopsies, surgeries, chemo, hospital stays and motherhood. I did not have the mental capabilities to react as I would normally to anything that hits me in life. I've been a reporter, a research nut, a constant observer my entire life. I've figured out what people have had going on with them before they have or their doctors. I've pored over documents, searched the ends of the Internet, called on experts, done it all whenever I have been faced with a problem. And chances are, I could solve that problem if I put in the legwork. This was different. Cancer was a whole other beast that I was not ready to face. I told myself I would not research it in the beginning, because I wanted to keep myself positive, and not everything you read on the internet is reliable. I didn't need my mind to start spiraling in the wrong direction because of some random blog or a scholarly article that gave numbers I didn't to see. I have chosen, since the beginning, to not be given a "timeline." Who wants an expiration date on their life? And even then, we all know that you can drink milk after the expiration date and still enjoy it, so what's the point? :) I was thankful that I had a doctor who believed in my philosophy. He didn't talk in numbers, he never made me worry, he always had a plan. Yet he was very empathetic to my case and concerned about me as a whole person, not just the cancer, how was I dealing with all this chaos and trying to be a mom? I will never forget that about him.
So in those first months, my doctor had my full trust and faith. I would keep up the positivity, keep myself mentally strong, and he would take care of the physical part. I like to think we both kept up our ends of the bargain. Today I am stabilized and still positive and he got my breast tumor to resolve and kept me healthy through chemo. Now, at this crossroads, I've given myself permission to enact a new part of my warrior status. I am allowing myself, for the first time, to delve into my paperwork, to research my cancer, to return to my old roots....to be me again. I don't know if this has something to do with no longer being on chemo, so I am able to put that aside and focus on another part of my fight. I don't know if it is because I finally am starting to feel like me again. I finally went to a family function the other day and was able to crack people up. It's been months since I heard genuine laughter at the things I've got to say. Months since I could crack up a room and feel that lightness in my heart when I do it. Life has always, always been about humor to me. Without humor, you have nothing. For months, people haven't known what to do around me. Do they make jokes? Do they feel sorry for me? Do they not complain because I have it so much worse in their minds? Let's face it, people have been dealing with me with kids gloves on. And that's ok. There is no playbook for dealing with someone with cancer. Did I miss the laughter....god yes. Especially making people laugh....that is such my favorite thing to do. But finally, on Easter, I felt like I had my funny mojo back! And it felt so good!
I'm back to working out for the first time in 18 months. That's a HELL of a lot of time to be away from physical fitness. But I am working out with a group of cancer survivors and people in treatment. I find myself being a mother hen there, making sure I talk to everyone, check in on them, see how their journey is going. Of course, they all look at me as the youngin with a new baby and again, they feel sorry for me, but I try to take the focus off of me, to let them feel like we are all in this together, because that in turn helps me to put one foot in front of the other.
This zebra has slowly been regaining her old life back. I dove head first into my medical file, finally. I mentally told myself that I might not like what I was going to see, but that it had to be done. I would be letting the cancer win if I turned a blind eye to everything going on in my treatment. I felt ready. I knew it was time to open that binder, look at the results, come up with questions, and take ownership over my own health. After all, we are our only and best advocate in this medical game. If I was going to fight this and win, then I needed to take it all on, not just the parts I could handle.
Opening that folder and sifting through the papers was not easy. Each scan, biopsy report brought me back to that first week of my diagnosis. I remembered driving to the doctor, knowing my life would never be the same. Watching my mother sob to her sisters. I remember getting my first mammogram, knowing that something was lurking in my breast and kicking myself for not doing self breast exams. Those reports take me back to the anger, to the frightening moments, the dark times when I wasn't sure if I had it in me to do this.
The medical jargon is so confusing and unnerving, but I made myself stick with my research. I "pounded the pavement" on the Internet anyway, finding articles, looking for inconsistencies, hoping for answers. It was the first time where I got a real feel for what my cancer is and what it is not. I could understand now why I wasn't identifying with so many cancer victims. Everyone's story is different, but mine was so hard to distinguish and explain that I just felt better off keeping it to myself. I scattered the papers around me and looked at the dates, the letterhead, and I was back in that hospital room in Crouse getting my first chemo, missing my baby, and creating my plan to survive. I don't know when the switch went from dark to light, when I realized that I could no longer wallow, I had to take the bull by the horns and beat this thing. But I know that I did in that hospital room one off the many nights I was alone with my thoughts.
Delving into that paperwork, I finally was taking back control from the cancer, even from the doctors. Up until this point, I had been a fighter, but not in every sense of the word. The scared little girl remained in the back corner of my mind and was willing to let others make the decisions to steer the course. Yes, a lot of this was because physically and mentally, I just wasn't ready for the task. I had to surrender myself to the physical fight and get that out of the way. But now I was ready. I was ready to be me again. The person who gets to the bottom of things, solves problems, seeks solutions rather than sitting and letting things happen. All my life I have looked to better myself. Now I had to walk the walk. It felt exhilarating to be back in my old shoes. I'm a sleuth by nature, and guess what, I found some issues, some inconsistencies. I was able to be assertive, and call out my medical team on mistakes. I was also able to face the diagnosis head-on. I took to the internet to read all about it. When I got to the prognosis parts, I skipped over them and moved onto the next article. I found experts, researched their bios, worked through scholarly articles to find people all over the world who knew something about neuroendocrine tumors. I made contact with Houston, Texas, Nashville, Tennessee, Galway, Ireland, NIH, and ultimately Roswell Park in Buffalo. It was time that I was mentally in this fight and I finally felt I was there. I boldly took the step of emailing a doctor personally with my story. I wondered if he would bite. If he would take me on and try to get me some answers. The next morning, bright and early, I had a phone call from his office and an email exchange among his colleagues. I had hit the jackpot...and I had done it myself. I can't tell you how debilitating it is to have cancer. Not just physically, but mentally. It takes away all your fun, it tries to strip you of your identity, make you a slave to its treatment, and numb your mind. It is easy to get caught up in that mindset of treatment and to let fear overtake you and turn you into something you never were...a meek, scared, and almost helpless person. Wrestling your life back from cancer, going back to doing the things you love, and relishing in the mundane of simply researching something, that is what makes surviving worth it.
My work has paid off. I am in contact with what I feel is a wonderful doctor who has an idea of what she is up against here. She personally wrote me an email and has already answered my questions about my current treatment. We have decided to hold off on the hysterectomy until I see her. She's in Buffalo and she signs her emails with her first name. She wrote me back at 1 a.m. and ended her email by saying I am doing everything I can and that they are going to do all they can to help me. For the first time, I felt something come alive within me. I was jumpy and anxious, but in a good way. The cloud of fear which has dogged me since November, showed some slight breaks of sunshine. What was this feeling? Where was it coming from? It finally dawned on me, it was HOPE. It came trickling in at first. I liked how this woman sounded, I dealt with the new patient nurse and she was delightful. I ran around like a crazy woman last night, fedexing files, getting faxes put through and sending emails making sure all my ducks were in a row. I could barely sleep last night because of this newfound hope. I had been praying for a sign to know if I should go through with the hysterectomy, and I got that sign at 1 a.m. when the doctor emailed me back to hold off. I was ready to scream at that point, scream with relief that I finally found someone who understood what I was going through and genuinely had the ability to help me. She was an expert and I felt safe for the first time in a long time.
Tonight, as I was explaining this to my husband, I brought up Dr. Iyer's profile at Roswell. I wanted him to hear what she was an expert in and explain to him why I felt hopeful. As I read her profile, I clicked on an article she wrote for one of the discussion forums. As I read it, it was like my heart felt ten sizes lighter. Her writing was so much like mine. She was explaining my cancer in terms anyone could relate to. I just felt connected. And then I read this:
 "To me, facing these cancers, like all cancers, is really a journey from being a patient to being a survivor—becoming someone who has taken their cancer and learned to live with it, to run with it, to make the most of life while fighting. We are here to help anyone become that kind of survivor, and I believe our patients appreciate it quite a bit. It is something I am very thrilled to be a part of."
I almost dropped to my knees in that moment. I wanted to thank God, my grandmas, Sister Mary Ann Cope, Aunt Kathy, Gloria, and Michelle for leading me to this woman. I know in my heart of hearts that they are all responsible for this doctor appearing before me.
I haven't allowed myself to feel hope in quite some time. Call it superstition, or fear, I just remained positive but didn't know what was in store for me. Now I have reason to believe that I can hope and I'm no longer a zebra wandering alone. This zebra is to fight on all levels now. I'm earning my stripes and learning to run with it. I will be that survivor, because I've got this!

Ups and Downs, Highs and Lows

It's getting late and I already attempted to try and go to bed once. I figured if I stayed up late, watched some "Scandal" and ate some ice cream, I would be ok once the lights turned out. But I wasn't. I laid down and immediately my mind started to spin with all the information and non-information I was given today. And then the tears began to fall. Slowly at first, but quickly escalating to whimpers and sobs. I came downstairs to seek solace in my writing. To get out my frustrations, let the world know I am hurting, and hopefully be able to find some peace in between. No one else is awake in the house, except for my Herbie and Dottie Sue (my kitties) who, god bless them, stick by my side all night long to calm me and lull me to sleep. When I came down here raking back sobs and trying to quietly have my pity party, I was met by their big round eyes, staring at me from the floor and counter, wanting desperately to make me feel better. But I need this small pity party tonight, I need to mourn the loss of  my "remission" status that I held onto for a week's time and basked in its glow. I'm back in limbo again, and I hate it. Hate it. There, I said it. I'll say it again. I hate it!
We met with the doctor today and I was expecting confetti and high fives all around, along with some smiles and "atta boys!" sprinkled in the mix. What I got was a doctor that was neither sad nor ecstatic, but rather matter-of-fact in saying "we just don't know." I went from 60 to 0. Last week I was squealing with excitement, facing the world with a newfound confidence, feeling like a warrior, glowing with anticipation of my future...I was allowing myself to even envision a future. Now, the rug has been pulled out yet again. I'm not officially cancer-free. There is no real way to tell what I have going on in my liver. I looked at the PET scan with my doctor, and he's right, we can't tell what if anything has changed. My liver, as is my diagnosis, are proving to be unique and nothing is black and white.
I had to make decisions today based on the little we do know, and had to put faith in my doctor and myself. Did I ask for a liver biopsy to try and see if there were still malignancies? But even that could provide false information depending on where they took their samples from. And even if it did come back malignant, would I want to try another chemo? My doctor assured me we had done the "top shelf" chemo (I thanked him because I have never been much of a "well" drinker) and that he didn't know that changing course would be the best answer. After all, the current chemo had resolved the nodules in my breast and chest. And I feel better. My liver is no longer enlarged and causing extreme pain. I'm working out now, and I feel better than I have in over a year. However, I do have my aches and pains, and those are always at the forefront of my mind. Are these cancer-related pains or are they just signs of a rusty old body getting back into things? To rest my own mind, I made the doctor look at my neck and the part of my chest that has been hurting. He is of the volition, as am I, that these are due to lack of use and regaining my strength back. Phew!
But there I was, sitting in that cramped little office, just my husband, me and the doctor. I had to take a deep breath and decide if I was going to put my full faith in the doctor. He suggested I stay on the tamoxifen, get a hysterectomy and repeat the scans sooner rather than later, in June. I felt like the wind had been taken from my sails. Even in the past 24 hours I was still riding high thinking I had beaten the SOB that is cancer. But even when I used the word "remission" I almost whispered it, for fear that it would somehow be taken from me....and it was.
I left the doctor after deciding to stick to our original plan. No liver biopsy, new scans in two months and a hysterectomy and tamoxifen. The doctor seemed encouraged that this would work to keep the cancer at bay. I asked him one final question before we left. I asked if I could say that my cancer had "stabilized" and if this was a good thing. He said I certainly could use that word, and that yes, this was a great thing.
I rode home with Bill, half-listening as he gave me a pep talk about all the good things that were said. How my feeling good was a sign that things were still on the up and up. How we were going to continue with our plans to move home, send Sam back to daycare, get my hysterectomy and continue to get me healthy so I could fight even harder. All the while he was talking, I couldn't help but think about what cancer had done to me in just over a week's time. I was given what I perceived as good news, allowed myself just the slightest bit of jubilation, all the while thinking in the back of my head that I should hold onto my doubts. Everyone with cancer will probably say the same thing. You don't believe anything the first time it is told to you. Good news you want repeated, written out, and repeated again. Cancer is all about waiting for the other shoe to drop. There is no such thing as relishing in the moment. As one of my fellow Livestrong program people said this week, "My life is a series of 3 month cycles of waiting, fearing, and then relief when I get my news." She was right. I thought often times over the course of this last week how I would prepare for my next scans. Yes, I was doing everything I could to enjoy life, be in the present, make plans and keep them. But in the back of my mind there lurked doubt, fear, anxiety. And now it had come true. I was given false hope. Now I needed to tell my family, my friends, my followers, that things were not all roses. It was embarrassing for one. And it was difficult to listen to others try and paint a silver lining. I bit my tongue all night long, I didn't want any of them to see me lose it. I would do that in solitude where no one could try and rally my spirits. I needed a good cry. I needed to feel what I was feeling.
So here I sit now, surrounded by cats, and tasting the salt of my tears. My liver is there, I can feel it, and there is an ache to it. Nothing like the extreme pain I was in prior to my diagnosis, but it is there. Does it scare me? You bet. Does it add to my tears? Of course. I hate this, as I said in the beginning. I just hate it. I want to go back to last spring, when I was hugely pregnant, complaining about lack of sleep, yet anticipating the love of my life. When my only worry was baby shower invites and room decorations. But you can't go back. There is no magic wand that brings you peace and clarity, that gives you all the answers you seek. Cancer doesn't play by the rules in that regard. And you are at the mercy of its rules.
So I sit, I cry, I whimper and beg for normalcy. I want to give my son a normal life, where he doesn't have to worry about his mom. One where we both know we will be here for each other. That sweet little man looks to me when he cries, he wants me to make it all better. He reaches out to me when he is afraid and tucks his head into my shoulder to feel safe. When he's napping, I take his tiny fingers in my hand and let their warmth and softness calm me. I whisper to him that I will never leave him. That I am always here. Damn you, cancer, for making me cling to these moments and ache at the thought of them being cut short some day.
Yes, I'm mad. I'm hurt and I'm scared. This neverending merry-go-round continues to spin and I continue to hang on. At least I am proving I am not going down without a fight. And who knew I had such fight in me? As I said last night, this journey is far from over. Little did I know, that I was still in for the long haul. I'm not giving up on that miracle. Not yet. I'm taking a deep breath, trusting in medicine, believing in hope and continuing the fight. I'm not done crying for the night. And I am sure there will be tears in the future. Afterall,  nothing is assured in this life. I just know that I have to keep putting one foot in front of the other. Do my part to feel good and be present. I can't let the darkness consume me, because then it has won. So bring on the curves, the pitfalls, and the bumps. I'm still standing and I'm wiping the tears away...because I got this!

The Journey Continues

Last week we got the news we had prayed, hoped, and begged for for months. We got our miracle, the cancer in my liver appeared to be gone, along with any other cancer in my body. I have a follow-up appointment with my doctor tomorrow (per my request) to go over the scan and to make a plan for the next three months. Although I appear to be cancer-free, (I say "appear to be" because anyone with cancer can tell you that we never believe that the cancer isn't lurking in a dark corner waiting to pounce!) that doesn't mean that things ease up and I am allowed some time to breathe. In fact, I feel like the battle is just beginning. Now I sit atop a ticking time bomb, because cancer, she likes to come back and come back with a vengeance.
Now, more than ever, I have to be vigilant about my health and getting myself back in shape and ready for whatever comes my way. I firmly believe that the cancer attacked me when it did because I was at my weakest. My baby was born with complications and then weeks later had to have surgery. I was unable to take care of myself physically and mentally. I was a wreck and cancer likes a wreck. It latched on to me as its prey and was determined to ruin me. Being at my weakest, that made the fight that much harder. I don't tend to realize how much I have suffered until afterward. I don't usually realize, in the moment, that I am in ruthless pain and undeniable exhaustion. I was taught a long time ago to push through and make it work. You can't do that with cancer and chemo. If you push through, you end up 10 steps backward, as I found out when I was forced to get six hours of hydration and when I was hospitalized for anemia. You can't mess around with your treatment. This is not the time to be a hero and not pay attention to yourself and your body. If I was tired, I had to sleep. If I was in pain, I had to tell someone. If there was blood, I couldn't ignore it. Bruises, fevers, bowel movements (yes, I went there) all had to be monitored. I'm not used to this. I had gave my body up to the chemo, my life was put into this treatment with the hope that it would make me able to do the things I was used to again someday. That I would be able to be the mother and spouse I needed to be.
Unless you have been through it, you don't know how debilitating the treatment is and how unrelenting. Chemo is cumulative, just when you think you have your body used to it, it adds on another layer. The nausea gets worse, the exhaustion never-ending, the pain unrelenting. And that is just the physical aspects. Emotionally and mentally, your brain is in overdrive. It's a constant battle to push the "what ifs" and the dark scenarios from your head. You look at yourself in the mirror and hate what you see. Remember, I had just had a baby too, so I was just beyond depressed looking at my body being deteriorated before my very eyes. You have to break down your body in order to rebuild it cancer-free. And while I had willingly entered into this treatment, it didn't mean that I was happy with all the changes. No more flat stomach, now there was bloating from steroids and chemo. No more hair, chemo took that too. Scars all over my legs from scratching due to my liver enzymes being all out of whack. No more pretty pedicures because you can't get those with chemo. My arms and legs look like linebacker's because the gym just wasn't an option for me. A fresh scar on the left side of my chest which reminds me every minute of every day that I have cancer.
Now that the chemo is over, some things are starting to turn around. My hair is growing back, but there is nothing attractive about a growing out buzz cut. I have no idea how to make it work. I'm back at the gym, having joined the YMCA's Livestrong program which has become my saving grace. I'm not one to ease back into my gym routine, and this program doesn't allow that. I am a part of a group of inspirational survivors of all abilities, learning how to get our bodies back, our minds back. We support each other, congratulate each other through the good, and hold each other in the bad. I don't think I have ever been a part of something I've been more proud of. I don't feel alone there. It gives me hope. And it allows me time to process what I have been through with people who aren't judging, who have similar fears, and get that our bodies and our minds are far from back to normal.
This process of "healing" is hard for most to understand. I have a husband who gets it without a doubt. He has been in my corner, not pushing, and encouraging me to take my time. You see, a lot of people think, you're cancer free, you're obviously back to normal. You got your wish, so get back to living! I wish it were that easy. I wish that I woke up completely refreshed, ready to take on the world. But, I'm not. First off, the chemo is still in my system. I'm still slightly anemic which makes you tired. My liver, although cancer-free, is now full of scar tissue. This means it is still enlarged, it isn't working at 100 percent, and I still get pain and discomfort at times. I still have to find out what the plan for my new "scarred" liver is. My muscles have atrophied from months of non-use. Working out is embarrassingly hard. My muscles in my neck are sore from just being in the car for more than a half-hour. You add weights, and cardio to the mix and I can feel like I got hit by a train. But I suck it up, because I want to be in this fight and I want to be better than ever.
In the midst of my chemo there were days when I could barely lift my head off the pillow. Being the mother of a young infant, this was heartbreaking and frustrating. I wanted nothing more than to enjoy my new baby's smiles, giggles, his expressions when he saw things for the first time. I hated that I needed help with this. That I couldn't do it myself. But I couldn't. There was no way I could juggle chemo, chemo's effects, and a newborn all by myself. Bill was going to have to work so we had some income coming in and for our insurance to stay in tact. We moved in with my parents to get the help we so desperately needed. My mom and dad were able to pick up my slack. And I'm not lying when I say that it felt like I was slacking. I can't tell you the number of times I cried out because I had such guilt for not being able to do the things a mother should do for their baby. I wasn't getting up at night with him. I wasn't getting up first-thing with Sam. I was relegated to my bed at certain times of the month. And when I was feeling like I had some sort of stamina,  it was always short-lived. Do you know how heartwrenching it is to pull back when all your son wants to do is play with you? When you have no energy to even pick him up? Do you know what that does to your emotional state? Over and over people told me that I was doing the ultimate for my son by fighting the cancer so I could live for him. But it wasn't any consolation. I felt I was letting my son down.
Now that I am done with treatment and getting back on my feet, I try to spend as much time as possible with my son. And I try to make it count. My day consists of tickling him until he giggles relentlessly, reading him books and teaching him words, walking outside to show him the trees and the birds, taking him on swings so he can feel the breeze on his little round face, drying his tears when he falls down while learning to crawl, and rocking him gently as he sleeps in my arms. I finally feel like I am a mother again. That he looks to me for the love he needs and knows that I am able to provide it. That he feels safe with me again. I am getting there.
Every one of you has helped me get to this place. A place where I am learning to be a mom again and able to trust my own body again. I am able to push the limits a bit, put my toes in the water, and move forward. There is so much work to be done yet. The exhaustion lingers, the dark thoughts still lurk, and there are moments of despair. But I am bound and determined to get my life back. I have been given a second chance. Granted, the life I am to lead does not look like the life I had envisioned even a year ago, but it is still beautiful and I still want to live it in every sense of the word. I have more ahead. More scans, more surgery, and doctor appointments. I still need help. I'm still and always have been appreciative to all of you. I wouldn't be here, wouldn't have the positive outlook that got me through this, without all of your help. Whether it was a kind word, a donation, a card, a phone call, a text, a meal, a laugh, a hug, a ride, or putting us up for months while I got back on my feet, I thank you. Now it is time for me to reclaim my life, my role as a mom, and to be a wife. It's time to be me again. The journey continues, but now I know what it takes and that I can do it because of all of you. I know, as Aunt Holly said all those month's ago, that "we've got this!"

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."