The War Rages On...

I'm writing you tonight from the comfort of "my" bed, here at my parents' house. Lying next to me is the world's number one bed hog, Sammy Lanchantin. I push him over to the other side of the bed, and within minutes he has shimmied his way next to me, which is more like latched on to me, a lot of times with his arms intertwined with mine, like a little monkey. This is all amazingly lovely and frustratingly uncomfortable all at the same time. We are in a queen bed and we might as well be in a twin at this time, in fact, we could both try and share the toddler bed and see how that goes! But I digress...
Treatment has been, well, trying. I started off with Taxol. All was well the first two times, aside from the fact that I was bedridden for most of those two weeks. Severe muscle and joint pain that never let up. I was eating pain killers like candy, sleeping non-stop and awaiting bedsores to start arriving! My mouth bled and had rivets down the sides of it, as if I had driven a truck full of glass schards down the sides of it. Food became a luxury that I was not interested in. Why eat when you can't swallow or chew because your mouth is on fire? My skin broke out because it didn't want to be left out of the "Attack Jodie's Body Party." I was the whitest shade of pale. There was no life in my eyes. I cried finally to my mom and dad, that I knew why people gave up the fight. This was a nightmare of epic proportions that I was trying to live through. I got to my third treatment and my white count was so low they contemplated throwing me in the big house...you know, the hospital. You know a place where germs vacation. I was sent home, told to mask up, rinse with a "Magic" mouthwash that was the equivalent of eating 5 sucretes and try and get my counts back up by eating and drinking.
Taxol treatment 3, was anything but boring and routine. I had been warned about allergic reactions, but this was one hell of a shock. The medicine dripped down my line and into my port. I laid back to get some sleep because IV Benadryl makes me feel like I have been hit by a tranq dart. But it started as almost a tickle in the back of my throat. Then I started to feel as if I was getting hoarse. I opened my eyes and looked at my mom and went to talk....uh-oh, I can't get the air out. Mom started yelling, 'She's having an allergic reaction!" she ripped the oxygen off the wall and threw it over my face, at this point my breathing was extremely labored. The nurses came running and I managed to see a crash cart being wheeled my way. Mom was my steady presence, "Just breath, slow, breath nice and slow" I tried to keep my panic at bay, but this was crazy! Drugs were ripped open and put into my tubing. My back started throbbing. My blood pressure was through the roof. But I was just breathing, just breathe. And within minutes, I was normal. THe pain subsided, the airway opened. I was me. My mom, not so much. Terrified. Can't say I blame her. So I was told to rest and relax and they would rechallenge me (give me the drugs again) in 30 minutes. I braced for another attack 30 minutes later, but everything went fine, and I received my treatment and headed home.
Next treatment, the nurse stayed right with us. Although I thought it was a bit overdoing it because I was getting a hydrocortisone shot on top of my other steroids and had been fine when I was rechallenged. Wrong. Six minutes into the infusion I could feel a wall of fire travel up my chest and onto my face. My throat was scratchy again and my back pain returned. Instantly the nurses went into action and I was fine again within minutes. My doctor had seen enough. He sent me home and was putting me on a new drug that was the same drug, just in a different solution.
I have now had 2 abraxane treatments and am happy to say that they are going well. I don't need premeds with this drug and I am done within an hour usually. However, I did land in the hospital with a fever after the first treatment. They attributed it to dehydration and gave me some IV antibiotics. I attributed it to the Zomeda infusion I got for my bone mets. I found online that it can cause a higher fever and you need to drink lots of water before and after it. So my research put me in the know for next time.
My white counts have become the bane of this whole process. I was put off again for my last treatment because of low white counts and neutrophils. Its all a numbers game, and perhaps that's why I don't enjoy gambling. And me, the absolute control freak, hates that I can't really do anything short of voodoo to get my white count up. Yes, there is a shot that I did with my chemo last year, but that needs a certain amount of time between treatments and I don't qualify for that. What's happening is my bone marrow is getting wiped out by the time I get to my third treatment. It's just not bouncing back enough for treatment. If they were to continue with treatment, and wipe it down to nothing, I would be susceptible to things like the common cold which could land me in big trouble with no immune system to fight it. As it stands right now, my immune system is ebbing its way back to "normal." but that's all it can do.
This treatment plan has made me a pill junkie. Every morning I go to my med strip (yes, I'm 36 and have a med strip) to take my series of pills and vitamins. Here's what I'm on these days, try to keep up:
Effexor--antidepressant, because without it I'd be crying in the corner
Water pill---blood pressure med
Norvasc--blood pressure med 2
Potassium--mine gets low and I have to take a prescribed amount
Calcium/Magnesium/Zinc--vitamin to help with calcium being drawn out of my blood by zomeda to prevent fractures in my weakened bone mets
Vitamin B complex--to help with nerve pain and neuropathy that this treatment ultimately leads to
Vitamin D--everyone needs that that lives in Syracuse, but I think there is a treatment reason to
Vitamin C--I'm now drinking the voodoo kool-aid and seeing if this helps up my white counts
Folic Acid--read that this helps with white blood cells as well, again voodoo
Colase--because when you take pain pills, there aint no way you are going to be able to stay regular. Gross.
Night time, Ambian--Cause a girl has to sleep at night, not during the day anymore!

I have gotten myself some yogurt and some garlic, because again, trying to voodoo method of upping my white count. Of course you don't eat them together....but I gotta try everything. There is no more frustrating feeling in the world than going to HemOc, waiting on blood draws and finding out, nope, even though you feel fine, you have to go home. Can't tell you how many times my schedule has been changed at this point. I can't make any kind of concrete long-term plans because what may be my "good days" now could be treatment days after next week. Right now we are settled on a 2 weeks on, 1 week off schedule. My fingers are crossed this will work.
I want to get scanned (never thought I would say those words!) to see what's going on in there. My liver has definitely changed. It's not lumpy and bumpy and most days I forget that I have problems with it. Sometimes I will get a pain, or feel it somewhat tighten up. But most days, I feel almost, dare I say it, human? No day is normal though. And I think that's where the misconceptions about cancer come in from outsiders.
You see, being stage IV means mine isn't ever "going away." My cancer has already spread to my bloodstream, it's in my bones, and its in my liver. I will never technically be in remission or cured. I essentially am living with a chronic disease, like say, diabetes, or MS. And I can learn to live with it and the stress that entails, or I can give in and give up and focus on the bad stuff. I try to maintain the positive focus, the fact that I am able to function most days but I do need tremendous amounts of rest. I've become the unreliable friend, sister and daughter. I can feel fine one day, then BAM! It's like a Mac truck hit me and I need the bed all day. There is no rhyme or reason to it, I'm still not sure when my good days are and bad. Being unreliable is something that bothers me throughout all this. I was never that person that cancelled. I always slapped on some makeup and made shit happen. But it's no longer that easy. For me, it's becoming harder and harder to get out there. I have a wig now, which is beautiful and classy, but I'm not wearing it every day. When I wear it, I feel like I have to be done up with makeup, otherwise I look like someone who did their hair and stopped at that. It looks weird. Plus throwing a hat on is so much easier than tugging on a wig and making sure it's looking right. One time during my last treatment I had a person tell me to "try a little, at least put on some lip gloss or something." It was so hurtful to me. It made me feel ugly and less feminine. But the truth is, I don't like covering up the reality of cancer for the benefit of others. You want me to look good so you don't have to feel bad for me? Save it. Now that my skin has erupted in acne, I have even less ambition to put on makeup. And then there are my eyebrows and now my lashes. I've always had thick, bushy man like brows. Just look at my senior picture. I'm almost a unibrow. Bert from Sesame Street is jealous of my look even. Now, they are these sparse, weirdly patchy things above my eyes. I don't even know what to do with them. I've attempted drawing them in but they just look confused. and again, if I draw them in, I'm committing to a whole face full of makeup. And my lashes...ugh. More and more are falling out everyday. They are starting to make my eyes dry and uncomfortable. It's weird how naked your eyes feel without them. They are very sparse and when I put mascara on them it's like you have  3 spikes coming out of your lids....its weird.
In the last two years I haven't really had to dress up for anything, so the loss of my hair and such has been ok to deal with. However, this spring I have a cousin's wedding and I am IN my sister's wedding in September. Hence the wig purchase. And now the false lashes and brow pencils and stencils. Plus my eyebrows are so confused, parts have grown back, but I have great big holes in other parts! So getting dolled up, something I so used to enjoy, is now a chore. I hate it. I don't have dresses that fit me because we are still working on losing the baby-weight and I'm in treatment so they don't want you losing weight really either. I no longer know how to shop for anything other than black yoga pants. If I could get away with it, I would be wearing them in the wedding. We got measured for the dresses and I was less than thrilled. All I want to do is throw on one of those waist-trainers, try one of these cleanses, and do the P90X or whatever the latest craze is!!!! But I can't. A waist trainer would abuse my already poor functioning liver and probably fracture my rib with a bone met. Can't do a cleanse with any wild vitamins or foods because so many things out there mimic estrogen and my cancer is estrogen positive. And exercise I can do, but nothing drastic. I'm likely to end up in traction if I overdo it. As it is, I rejoined the Y with the family and I did a grand total of 20 minutes on the "monster" as my friend Mary and I affectionately call it, and I was done. There is no such thing as a diet for me now. My tastebuds have died and gone to heaven. I now eat bizarre things and usually very bland stuff because that's all I can stand. So what I am getting at is, this sucks.
I had a very productive day yesterday, got some things done and played outside with Sammy for a bit. Thought I did pretty good for myself. Ended up sleeping until 3 today. And I SLEPT! My body is on a constant see-saw of good vs bad. and sleep is a vital part of me having those good days. Just because I am out of treatment for a week, does not mean that I just bounce back and can be like everyone else....although I wish it did. Those drugs are still circulating in me, killing off cells, making me fatigued. You see, the war is constantly being waged within. I may be smiling, wearing a wig, heck I might even have jeans on!! But that doesn't mean you should think I am good to go. Chances are, the next day I will be bald and in my nightgown, popping pain pills and angry with myself for overdoing it. Unless you are living it, you aren't in it. My husband, my mother, Sammy, and yes, even my father somewhat is starting to understand, that this is a day-in, and day-out lifestyle that will never go away. it makes me miss out on a lot. It makes me piss off a lot of people. My plans are always subject to change.....and a lot of time, they do.
The ones that truly understand my plight are dwindling day by day. In the past month, I have lost several people who have set out on their own cancer journeys and befriended me along the way. My prayers for miracles have now turned to prayers of healing for so many. I've seen families become fatherless and young mothers go into liver failure and pass. I've seen young activists who were viewed the strongest amongst us, taken. Months ago these same people were posting pictures at the beach, talking about new hair-dos, smiling at weddings. Living life. Then like that, the cancer showed up, unannounced and uninvited, to the party. It's just that, a party crasher. Cancer takes all your dreams, goals, and plans for this party we call life, and upends them, crushes them, and leaves you at its mercy. Is this treatment going to work? Will this scan show the all-clear? Will doing this procedure, lead to complications somewhere else? Should I even consider the treatment? Or am I just taking shots in the dark that will leave me dying a death I don't want? These are the questions we are faced with everytime we walk into the doctor's office. EVerytime we feel a new pain. Every time we get nauseous....is it the flu or is it brain mets? I can assure you that you would never want to pull the balancing act that I pull in my brain. What do we worry about today? And if I don't worry about it, will it come back to bite me in the butt? It's neverending.
We honor their memories by trying to live, for being their voice and continuing the fight. So although I may be unreliable, walking around without make up on and sleeping all the time, know that I am waging a war that you can't see, and therefore you can't judge. I'm definitely not the same Jodie, but I am definitely a blessed person who quiets the ticking time bomb as best she can by being there for the others and being honest about who I am with this disease. I'm determined, I'm scared, I'm positive, and I believe. And believing is knowing that I got this!

In the Still of the Night

I'm not going to bore you all with the "sorry it's been awhile" crap. I've been out-of-touch for several good and several not-so-good reasons. The good being I was out living my life. Taking the family on spontaneous trips this summer, going to the pumpkin patch, riding ponies, picking apples. We got a tree and decorated it together as a family and Sammy learned my love of all things Rudolph and naturally became obsessed like his mother. We opened gifts at our house, watched him marvel at Christmas lights and gradually become a fan of Santa and not a terrified mess of the stranger with a beard. It was a struggle, but now he loves "Ho Ho." Things were looking up, but we were never far from the cancer diagnosis. I had scans every month since my treatment ended. Things like head pain, neck pain, routine exams, then pain in my abdomen and then ever so slowly, my liver functions started to creep back up. By the end of treatment, they had gone almost back to normal. By September, they slowly began their uptick. I was taking my Tamoxifen, getting the shot in my butt monthly, and doing my part to stay sober and still enjoy my summer. I knew by October in my mind, that things were heading downhill. They found a spot on my spine, the T9 vertebrae. This triggered a PET scan. I had gone alone to my CT appointment (first time ever) because I was sick of depending on others and knew I was strong and honestly, there comes a time in your treatment, where you just want to be left alone. It sounds selfish, it sounds ungrateful. But you want to cry your own tears, deal with your own pit in your own stomach and not have to glance around at your loved ones and see how you have broken their hearts.
Being weak, crumbling in a parked car on the far edge of a parking lot, kicking and hitting the dashboard where no one can see or hear your gut-wrenching bellows or sense your terrifying thoughts of obituaries and funerals, and how you will prepare them, all of them for the possibilities of a life without you....you it's overwhelming, it's hopeless, it's numbing. But if I can do that alone, even for just five minutes, I have let the grief out instead of letting it build. I have allowed myself time to take care of me and to wrap my mind around all the things that race through your mind with reoccurrence. It's like being diagnosed all over again.
The PET scan showed increased "hot spots" in my liver, but my doctor wasn't convinced this was bone metastases. Then in December we rescanned, and it had grown. I was sent to the radiologist oncologist who met with me and really didn't think radiation was necessary. However, I complained of lower back pain which I suspected was from lugging a 30lb toddler around. She ordered an MRI. Again, I went to the results appointment alone. She walked into the room and said "Oh you are alone." I immediately started crying. The MRI showed widespread bone metastasis. A later bone scan showed there were spots in my ribs, my hip, my entire spine, my entire pelvis. and my sternum. This was New Year's Eve. I was floored by the results. I had no idea I was walking around with that much cancer in me. I had to make an appointment with my oncologist to discuss a new plan. In the meantime, I had my sister reach out to Sloan-Kettering in NYC. I wanted all my ducks in a row. I had heard of a drug PD-L1 that was having great success in clinical trials. My oncologist did not want to do anything to put me at risk of not getting into a trial, so we agreed to hold off on treatment until I met with Dr. Karen Cadoo in NY. I won't bore you with the details of that appointment, but a lot of good came out of it. She told me she was confident treating this as a metastatic breast cancer. She is molecular testing my tumor in hopes of finding some sort of targeted therapy that could work to kill these tumors. She agreed that chemo should be the next course of action to get my liver in check and she was reaching out to her colleagues about clinical trials for after chemo. THe one thing she did stress was that there were many options still to play out. She gave me hope.
Dr. Cadoo and Dr. Cherny spoke at length and agreed that chemo was the way to go. At this point my liver was not cooperating. I had lower right rib pain and was getting nauseous. I had been through ten treatments of radiation on my sacrum and lower spine. Radiation literally and figuratively had kicked my ass. I was in bed for two weeks straight, the nausea was never ending. I had been put on a new hormone therapy that was giving me headaches, but those combined with the nausea caused concern for brain metastasis. So there I sat again with a Hannibal Lector mask over my face listening to the clanging and banging of the MRI machine and praying the whole time that at least my brain was clear. Thank God it was. So now I needed to do a restaging CT of my chest, abdomen and pelvis to see what was causing the pain. Sure enough two spots on my liver had grown and now the bone mets were showing up on the CT scan. Chemo was going to be my choice of poison again.
Both oncologists agreed that I was to start on Taxol. This drug is for metastatic breast cancer. I go in once a week, three weeks in a row, for my infusion. I get the fourth week off to recover. Side effects are not as bad as my last chemo. I could get numbness and tingling in my limbs (which I already got vitamins to combat), nausea, and yup, the hair is gonna shed. But as I told my PA, I would rather be bald and here, than dead and coiffed.
People have asked if I'm upset with this treatment plan. If I'm feeling like its a setback or I'm sick of being sick. Yes, I am so sick of being sick. But I am actually looking forward to this chemo. Why? Because I gave it up to God a month or so ago. I was reading the bone scan results in the still of the night, while my husband slept after we tried to have a night away. Truth be told, I've been very sick for a while now. My radiation oncologist looked me in the eye and asked me if I knew, if I had a feeling when she gave me the MRI results. I told her I did. It's the low-grade fevers at night that are unexplainable. The all of a sudden not having a desire to eat all the things you love. Not wanting to get out of bed, because of a nagging depression, yes, but also because the thought of having to walk downstairs and exert yourself in any way is impossible to fathom. You hear the pitter patter of your son in the morning and his squeals of delight and you just can't do it. You can't make the trek because you just don't have it in you. The staring at your loving husband as he sleeps and whispering that he deserves so much more than this. A wife that can give herself to him, who can take a shower, clean the house, and make him dinner and be an equal partner. All things I can't do these days. My liver is hard to the touch, I have had to lay in a separate bed. He brings me pills, and drinks, and never asks for anything in return. And it's just not fair, because I don't want these to be our memories. I never envisioned myself being this person. I'm such a far cry from the girl he met. It's just not fair.
So as I lay next to him that night, with tears streaming down my face, I told God, that I believed I would fight my way through this. That I was strong, I am strong, and that my husband, my baby, they need me. I said in that moment that I placed it in his hands, because only he knows what my fate is and that I would continue to be the best person, the strongest person, I could be. I believe in miracles and life everlasting. And I believe that I will be healed. I know it will be hard, and I signed up for hard. I will not break, I will come out the other side of this. I didn't bargain, I just said what I needed to say, that I will fight the hard fight because that is my purpose. And with those words, an unexplained calm washed over me, this feeling I have never in my life felt. A feeling of being wrapped in warmth, your tears dried, and your fears subsiding. I knew I was heard.
Walking into battle today, armed with my mother, some smutty magazines, lots of diet soda, and my best chemo swagger, I knew I was taking the first steps in getting the job done. I don't care if I have to be on chemo for years. This is my job now. My job is to live. To show others that miracles do happen, that believing in yourself is the basis of all that is good. So I sat in my chair, put up my feet, answered the nurses questions, and watched as she fanned the alcohol dry on my port. I took my deep breath in as she plunged the needle in and watched my blood collect in the tubes. It was surreal, it was deja vu, it was old hat. But this time, there is less fear of the unknown. I've been down this road before. I know it can work. As she hung each bag of medication, asked me my birthdate and mom made sure I was comfortable (I forgot how much I love a heated blanket!), I watched the drips go through the tubing and into my chest. I just want to feel whole again. To not get winded going up the stairs, to enjoy a meal out with my friends, to put make up on and feel like me. This chemo is allowing me to take back my life. Take back control of my body and to be me again. I just know it is. I'm not living in denial, and if you feel I am, you can take a hike! Negativity has no place here. And I am living in reality. I know that I will never technically be "free" of cancer, but I can live with a chronic disease. I can and I will. So let there be no more tears in the still of the night. Let there only be visualizations of health and wellbeing. Of running through the yard with my growing son, of romantic walks with my husband, and laughter, oh so much laughter, at my sister's wedding. Tears are not necessary. Smile big, laugh til your belly hurts and you can't catch your breath. That is what living this life is about. And when you realize that, then you know that "We got this!"

Patience is a Virtue...

Well hello again, everyone. I know it has been awhile. A long while. I guess I took a break from all things "cancer" for a bit. I was done with treatment and needed to just spend some time getting back to normal. I was hoping that once I got the chemo out of my body, that once I was stabilized and done with the rigors of everything treatment entails, I would be able to just pick up where my life abruptly stopped on November 26, 2013. I was wrong, it hasn't been that easy.
In May, we moved back into our house which was like a shrine to my pre-cancer life. It looked like we just dropped everything and left....and essentially we had. There were maternity clothes in the laundry. New work clothes I had purchased for my job I had spent just four days at, sat in the bags with tags on them. The baby's room was full of clothes that he grew out of without ever having a chance to wear them. I saw the couch where I spent most of my days last Fall because I was so tired. In our bedroom pain pill bottles were strewn about along with a heating pad, all remnants of my attempts to make the pain go away before I knew what was really going on with me.
My cousin, Elizabeth, did a wonderful thing. Knowing that my house was going to trigger some bad thoughts, she came over and repainted the living room. She decorated it and brightened the room so that I could have a clean slate and not be too threatened by the thoughts of the past. I don't know that I could have come back to the same house. So much had changed in six short months and the fears and anxiety did come back when I walked through the doors of my house. It was overwhelming. My world had been turned upside down and inside out. I had had the safety and comfort of my parent's house, of them being there, to cushion me and now we were on our own. I knew it had to be done. If I stayed at my parents', the cancer would be winning. I was determined to show the rest of the world that I could get on with my life and begin healing.
In true Jodie fashion, I took on too much. I have always been a lot like my father in terms of doing everything at once. I can't just start things slowly and easily. I have to take them on full bore and push the limits. For instance, I'm not going to go to the gym and do five minutes on the elliptical and build up from there. No, no no. I am going to go for at least 30 minutes. What happens then? Well, you end up in bed for two days afterward. I found that out quickly. My body had been through the ringer. Chemo, again, is essentially poison that just debilitates you to no end and you have to be conscious of what your body has been through. Muscles are weak and atrophied, bones are achy, joints are stiff. In my case, I had the added bonus of pregnancy changes to my body to deal with. I essentially had not worked out for at least the last 18 months. But I wanted to show everyone, including myself, that I was coming out ahead of the game. That I had the stamina and resilience to do anything I wanted. So I tore out the backsplash in our kitchen. Paid for it by having to sleep hours upon hours. I then decided to redo my whole front garden. Ended up with a sore back and neck. Didn't learn my lesson. Bought a bike, figuring that was low-impact. Ended up with runner's knee. The straw that broke the camel's back? Rolling over in bed after a few days of working out and lifting a 25lb baby only to have excrutiating neck spasms. I was toast. Couldn't lift my head off the pillow. My father had to carry me out of bed. This was it. I realized right then and there, cancer had ruined me physically. It was an incredibly frustrating realization. I know, as you get older, things get tougher. But this was different. I look at my body in the mirror and I just don't look like the same person I was six months ago. I have varicose veins and cellulite. I used to just accept that parts of my body were never going to be what I wanted, but there were areas that I could appreciate. Now, I don't see anything I like anymore. No more flat stomach. My arms make me cringe. They are covered with bruises from low platelets and my shoulders round over from poor posture. I hate not having my hair. Hate it. I'm missing my favorite accessory. In the past, whenever I fluctuated in weight, at least I had good hair that I could use to detract from my hips or my butt. But that's gone now, and in it's place is an overgrown brush cut. Everyone tells me that I look "beautiful" with short hair, but I don't feel it. I pull on the hair every time I am trying to style it, in hopes that this makes it grow longer quicker. I just don't feel like me anymore physically or mentally. I can't explain it without sounding like an ungrateful bitch. I'm so lucky to be alive and that my cancer responded to treatment. God and I talk every night about how blessed I am to be here. But, if you all want the truth, and I vowed with this blog to give the truth, I feel that every day I am walking a tightrope between grateful feelings and overwhelming depression and anxiety.
I am not the same person I was for the past 35 years. I am now a person living with cancer and its effects. But I am alive, and I feel that each day I have to show my appreciation for that. If I sleep in, I feel guilt. Guilt that I am not making the most of each moment. If I send my baby to daycare, I feel guilt. Guilt that I am not enjoying what time I have with him because who knows when things could change. If I go shopping and spend money, there is guilt. Why? Because cancer was supposed to show me it wasn't about material things. Not to mention that going shopping for clothes is beyond depressing now. I am in the "pretty plus" section and even buying things that fit right, I feel ugly. There, I said it. I feel like I look like a giant blob whenever I catch my reflection in the windows when I am out and about. And to top it all off? Yeah, my skin decided to erupt (another medication side effect) so I looked like Cyclops for a while there.
Some of you are probably thinking that I am going off the deep end here. I'm not. I take an anti-depressant and for the most part, I stay on the even-keel throughout my days. I have just learned to accept that this is my new normal. Hair grows back and weight can be lost. But, to a person who goes all-in and expects instant gratification, the wait for long hair and a skinnier body is going to be trying and getting these things won't be as easy as it was in the past. My new treatment plan involves taking Tamoxifen and getting a Lupron shot once a month. Easy, right? Not exactly. The side effects of these two things reads like a list of every girl's nightmares. Weight gain, hair thinning, mood swings, joint pain, insomnia, hot flashes. But, the drugs are working, so I should shut my mouth and quit my complaining. That is the battle I have in my head day-in and day-out. You're alive, you brat. But I want my old life back. In this moment, I feel like throwing my body on the floor and having an old-fashioned tantrum. I want to scream "GIVE IT BACK!"
But here I sit, typing and trying to control my anger and frustration. The hardest part of this whole recuperation and treatment has become my mood swings. My doctor warned me back in April that I would have pretty severe ones. I assured him that I could handle it and he said that these mood swings were more like "put down your weapons" kinds of craziness. I just laughed it off. In the few months that I have been on the pills, I have become aware of my shift in personality. What also doesn't help is being on a different anti-depressant. I had been on my old one for over 10 years and liked who I was on it. Now I just feel like a bitch. (Sorry I keep swearing, but bitch is the best way to describe it!) I can be totally fine for most of the day and then every little thing will irritate me. The way my husband chews, the way Sam is crying, the way the cat is looking at me! Seriously, I become irate! I literally have a dialogue in my head to calm myself down. I have to count and breathe to get myself through it. I find myself yelling and screaming about things and I see the way that Bill looks at me, and hate myself for being like this. But I honestly feel that I can't help it anymore than I already am. But I hate it. He doesn't deserve it, the baby doesn't either. Anyone that knows me also knows that I just adore my cats. Now I find myself screaming at them and pushing them aside more than petting them. I feel as if I have been rewired into this new person that is a complete stranger to me.
I just feel awful when it affects how I deal with Sam. He's a baby who can't communicate and needs a mommy who understands. Today I found myself losing my cool when he wouldn't nap. Bill finally came and took him from me because I needed a break. As he walked away from me with that sweet little boy in his arms, I burst into tears. What have I become? I feel like a monster. I feel like a failure as a mother in these moments, but I feel so helpless to my mood swings. Am I cheating Sammy out of a true mother experience? I already feel like he looks to Bill for love and affection more than me. I feel like I've done that to myself by not being there for him all the time. By sending him to daycare so I could sleep. Am I just a lazy lump? I don't know.
I guess it is time to go back to the therapist. I know I need to talk some of this stuff out. I still have fears. Just today I was reading about a woman who had breast cancer diagnosed in 1997 at age 29 and she died in 2009, I believe. It set me over the edge and reeling. I'm good right now, but when is the cancer coming back and will I beat it the next time? I mean, 12 years is a long time to live with it, but have you ever thought about what it's like to put an expiration date on your life? I find myself thinking about myself in 12 years and where will we be and what if I have to let go then?
I went shopping and as I was trying on sunglasses, I looked at my face. The acne, the swelling, the short hair. The stranger. And I saw the necklaces and jewelry dangling behind me and thought of previous summers where I would be buying jewelry to match a dress that I had to have because it made me feel beautiful. My heart sunk. I don't feel pretty anymore. And then, as I drove home, "If I die young" by The Band Perry came on the radio. Tears streamed down my cheeks as I sang the words aloud and thought about death and how I have faced it this past year on more than one occasion. And I thought about how it is always there. On the paperwork I have to fill out for benefits. Do you know what it is like to have to check a yes box on a paper next to the question "is this expected to result in death?" Do you?
Last year at this time, I was full of life in anticipation of welcoming my little boy. Now, I fight. Some days are better than others. Today was the first day in a long time that I felt sorrow. Maybe I needed a good cry, and I needed to vent. I don't know. I feel somewhat better after the tears have subsided. And I'm still in fight mode, that part of me never left. I guess I have to adjust to the person I have become and recognize all that I have been through. We all know that we are our own harshest critic. Bill told me I need to ease up on myself and while I was crying he set Sammy down. That little buggie crawled over to my feet, pulled himself up to my knees and touched my hands and smiled at me. It was like he knew I needed him in that moment. And he needed me. Sammy reminded me that I am still the person he grew inside of and gave him life. I'm the person who held him in the hospital for hours and rocked him to soothe his cries. I am and always will be his mother and cancer cannot and will not take that from me. I scooped him up and told myself, "We STILL got this!"

A Mother's Love Conquers All

Today I was able to soak up some sunshine, take my baby boy out and about and spend time with my mom. Overall a good day, where I got to dream my dreams, make plans, see the sun one more time, and kiss my baby on his little round head as many times as I wanted. Yes, cancer did rear its ugly head this morning. It always manages to impede some part of my day. Today it was in the shape of a doctor's appointment. It was a simple follow-up with my oncologist, no scans, no bloodwork, nothing to be spooked about. I went alone because I wanted to just have a conversation with the doctor about my diagnosis, the thoughts that the GI specialists at Roswell passed along, and to go over some of the things I have changed in my every day life in order to get myself healthy. It was a good conversation, he was proud of me for the exercise I am doing and he felt my abdomen where I was having pain, and didn't feel anything to be concerned about. This is my new normal. Going to the doctor and talking symptoms, energy level, planning new scans. I left cautiously optimistic that I am in a good place. I have taken ownership over my diagnosis and am actively involved in the decision-making for my treatment. I'm finally back in charge of myself and healthy enough to speak up and ask questions for myself. For a while I was relying upon my family and Bill to listen to the doctors and give the ok. I just wasn't there mentally to do it. I put a lot of faith into them, into the doctors, that if I gave myself wholly to this fight, they would be doing right by me and doing their part to keep me alive. I left the office today, glad for how far I have come and hopeful for where the journey will go next. I felt like I had a handle on the cancer, a leg up if you will. That I was getting somewhere. The sun was shining and I was confident for the first time in a long time.
Of course this was short-lived. I had a nagging feeling all day about cancer. That it was going to take a life today, hurt someone, devastate a family, break hearts. And unfortunately, I was right. Jenna Hinman, a local woman who thousands have prayed for over the past two months, lost her brave battle with cancer this afternoon. For those of you that don't know Jenna's story, it is intense. Jenna delivered twin girls prematurely in March and it was quickly discovered that she was full of cancer, a rare cancer of the placenta had ravaged her body. Her girls were transferred to the NICU here in Syracuse while Jenna was placed on life support in the ICU. Her husband, a soldier out of Fort Drum, was by her side every day. Jenna's fight to stay alive became the community's fight. It became a national story with thousands praying for her recovery and following her progress. The news was usually upbeat, with small steps toward recovery seeming to happen regularly. But then this weekend, Jenna took a turn for the worse with a serious case of pneumonia. She was fighting valiantly, but her body gave out and the world was informed today that she passed suddenly this afternoon.
I read the news with a lump in my throat. I had some idea it was coming, but that didn't make it any easier. Did I know Jenna? No. Did I pray for her? Every day. She was a part of my "list." The list of women who I feel a kinship to, who are young moms that were dealt with the most difficult of circumstances. Bring a child into this world while waging a war against cancer. Sounds easy, right? (sarcasm). I, unfortunately, am not alone in circumstances. Throughout this journey, many have shared with me the stories of friends and relatives who found their cancer while pregnant or had a child and found out the devastating news as I did a few months in. Some of you are familiar with Dr. Jen Arnold from the show "The Little Couple." She actually developed cancer from a miscarriage. She had to fight with her all after bringing home her adopted daughter. And there are many others.
I found myself getting angry tonight. Not at my doctors or their doctors, but just finally saying this is bullshit. One of my friends on Facebook said it best. This is supposed to be the celebration of a wonderful beginning, of becoming a mom, celebrating all your "firsts." And what has happened? Myself, Jenna, Jen, and all of the others have been forced to ask for help, hand over the care of our babies to others while we give our everything to be there for our children for the long haul. It is bullshit,(sorry I am swearing, but it is the only word that does it justice), that these women, myself included, have missed out on the joy of first teeth, first words, first steps because we are in the hospital, at a specialist in another city, or even just in bed completely wiped out from therapy.
What kind of God does this? Throughout my fight, I have had faith. I have said prayers, gotten on my knees and said novenas, prayed to St. Jude, carried crosses, worn blessed beads. I've surrendered myself, put myself in God's hands and stayed true to my faith when the world seemed to crumble. But with Jenna's death, I have no perspective. I have to reasoning. There is no rationality to it. A young, beautiful woman with two baby girls who needed her, has died. Where is the greater plan in that? I can't rationalize this one, God. I can't see how this is for the best. And I call bullshit.
We as women, new moms, already have our hands full. And I can't say or hear again "God gives us that which we can handle." Again, bullshit. At this point, with all I have seen, the friends I have made along the way, the kinships I've formed with women I have never met, who walk this same path with me, you can understand my anger. Guess what? There are days when I cannot handle all that I have been given. There have been days of exhaustion, where I have been hovering over a toilet of puke or lying in my bed throbbing in pain, where I have wanted to say ENOUGH! I'm not that strong, and why, why WHY have you chosen me to walk this path? Why can't I have the "normal" pregnancy? Why can't I have the regular new mom problems? Like whether to breastfeed or formula-feed?
No, instead I have had to be separated from my baby for 24 hours when I have PET scans, figure out who was going to watch him because daycare was out due to germs being brought home to my weakened immune system. I had to pack my baby and husband up and move in with my parents. I had to become a burden.
Today, I had to get in my car and just drive when I heard of Jenna's death. I wanted to push the accelerator into the floor of my car, go as fast as I could, to unleash my rage. I was angry crying, wanting to beat things. I felt like a little girl who was having a tantrum. I was. I was an adult throwing a tantrum. It was as if I was asking "why?" only to have my parents say "because!" Just infuriating.
My poor husband, he didn't know what to say, what I was going to do. No one could possibly know what to say. This was between me and God. My mom said, "Something good has got to happen soon." And she's right, enough is enough with the loss, the tragedy, the sadness. As I drove today, I looked to the sky, I demanded answers. Of course, I knew they wouldn't come. The universe remains a mystery, and no one will ever know why we end up on certain paths toward certain destinies. Shedding tears, raging within, none of this will answer my questions. I will never know why I got cancer. Why I got cancer four months after Sam blessed my life. Why I have had successful treatments while others have suffered and lost. I also will never know why in those moments of feeling defeat, I was able to pick myself up and soldier on. We just don't know. I just know that despite the pain I've gone through, the exhaustion, the needles, the tears, I have learned that I am a survivor. I have been told by many that I've been through more in 9 months than most go through in a lifetime. My baby, Sam, is the reason I am alive today. If not for him, I don't know if I would have had the same amount of fight in me. I stay positive, for Sam. I choke down vitamins and smoothies, for Sam. I was poked with needles over and over again, for Sam. And now I exercise, research new treatments, seek out knowledge, for Sam.
They say there is no stronger love than that of a mother. And they are right. Nothing can knock out cancer more than a pissed off mama bear. I have waited my whole life to be Sam's mom. I will be damned if cancer takes that away from me. The loss of Jenna resonates with many of us mothers. She won't be able to see her girls grow up in this world. But she fought longer and harder than many of us could have.
As I drove today and thought of Jenna, I glanced toward the sky. I found my answer in the form of a rainbow coming through the clouds, assuring me that her battle was not fought in vain. That rainbow didn't answer why, but it illuminated the darkness of the moment. It was as if Jenna herself were telling me that there is hope, that this isn't all for naught. That rainbow eased my pain, reassured me and made me see again. Thank you, Jenna. You're right, us moms, we got this!

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!"