Stage II

I was having a hard time falling asleep last night. This is not entirely uncommon. I tossed and turned for a bit and was playing back the events of the past 9 months. I basically rewinded from today to the day I was told Elena has cancer. I cringed at the God awful memories, but for the most part, had this overwhelming sense of relief as I looked back at how lucky we have been in terms of how quickly she progressed and responded to treatment and how well, for the most part she has bounced back each time from chemo. 

Then I replayed the conversation with Elena’s oncologist after her first scan at CHOP. I’m not sure why, but the term “Stage II” sent me into a panic attack. Cancer. Stage II cancer. What???? Not that I don’t think this word and say the word and hear the word on a daily basis, but saying the staging of it at diagnosis was like a slap in my face at 1:15am. 

My chest felt suddenly heavy and my breathing became fast and shallow. What the hell? It’s been 9 months since hearing the diagnosis and staging and for crying out loud, we’re almost DONE with treatment. But here I am, laying in bed, not sleeping ready to have a heart attack over it. 

I’ve been told that the end of treatment surfaces a lot of unsettling feelings. As if all the emotions you haven’t felt come crashing down on you. I figured I could skip this part, as I’ve been trying my best to deal with the emotions as they come instead of bottling them in for another time.  But that’s not the reason for the unease as we approach the end of chemo…

From the start, I think I’ve somehow separated the emotions from the actual cancer. Weird, I know, but hear me out. In terms of “cancer,” I’ve become…I don’t know, a nurse of sorts. The names of each drug Elena receives as a part of her chemotherapy- Vincristine, Dactinomycin,Cytoxin and Irinotecan. Her medications and antibiotics she takes at home and the dosages of them. More than I ever thought I would understand about platelets, hemoglobin, white blood cells and ANC. The difference of each of them and symptoms to watch for when they are respectively low.  Cancer- Rhabdomyosarcoma. Got it. 

The emotions have been seperate. A direct cause of course, but not necessarily dealt with together. Anger…a lot of that. Heartache of epic proportions. Fear. So much fear it’s suffocating. No parent should ever have to question the life expectancy of their child. While we were fortunate enough to have that fear quickly negated, it was there…most especially during the first week of diagnosis. But it wasn’t until her first scan at 6 weeks on treatment, when I saw the images of the drastic change in the size of her tumor, that the fear was quelled. And then there is the fear of what’s to come. I know I can’t live in it and let it define our lives, but it’s there, and will be forever. A hundred thousand other emotions in the meantime. All felt and “dealt” with. 

Stage II. CANCER. As we draw nearer to ending chemo, having her end of treatment biopsy and removing her port, the weight of it is hitting me. Hard. Upside the head.  The diagnosis and emotions are intertwining and befriending each other, while I’m tossing and turning trying desperately to catch my breath in the middle of the night. Here’s to findings my balance, footing and strength for this next stage of “new normal.”  

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No Easier

The past several weeks as we have gotten closer and closer to the end of treatment I have been in this happy-go-lucky, things are great state of mind. I’ve felt that these next weeks would be a breeze in comparison to what we’ve been through. After yesterday’s chemo, I realize just how wrong I was. 

A twelve hour day in the hospital is God awful from the start. You’re up early, and then you’re just sitting all day, never really getting yourself that energy you need to feel human. I was on the fence about if Elena was going to make counts for chemo. Her ANC (absolute neutrophil count), which is basically white blood cells, or the level of which her immune system is functioning, needs to be 750 in order to get chemo. A normal level is between 2000-7000.  Yesterday, her ANC was 768.  Talk about making it by the skin of your teeth. 

Getting the chemo started wasn’t so bad, as we keep her occupied and I’m snuggled next to her throughout the day. It’s not fun watching your two old act like a drunken sailor from the anti nausea meds she’s taking. It’s even worse when they don’t work. The first round of puking isn’t so terrible. She throws up the contents of her stomach, shakes it off and proclaims how much better she feels after.  It’s after the fourth time, when her stomach is empty and it’s causing her severe physical pain to dry heave…that’s soul crushing watching your child go through that. And yesterday was the worst she has experienced. Not only did it persist all day and  up until we left around 8pm, but we ended up filling the entire garbage can in the room with those blue puke bags. I don’t know…15 of them? 

Yes, I know. We’re almost done, we’re close. It’s true and I am so incredibly grateful for that. I’m grateful for how amazing Elena has progressed, how little has changed in her life and I know, truly, how much worse it could be. But even knowing all of that, it doesn’t make days like yesterday any easier. Yesterday, as I’m sitting Elena up from a dead sleep so she can throw up the smallest amount of water she just drank….listening to her stomach wretching, begging to get everything out…no, it is no easier knowing it is only one more time after this that she will have to have this three drug chemo cocktail that makes her this sick. Once is enough to break your heart, and hard. 

Set backs and strides forward

Last week was a tough pill to swallow- Elena had her very first set back of chemo due to her white blood cell counts being too low. Yes, I’m thankful she has been able to progress as she has thus far, but being so close to finishing treatment that I can taste it, and having to postpone and prolong just plain ole sucks! Part of it is just the living in the moment suckage, the other is knowing that after 8 months of intense chemotherapy, her immune system is shot and her counts aren’t going to be predictable, thus taking away the schedule we had set and leaving the last treatment date unknown. If only her immune system would keep up with her energy levels! The tumor is gone, cancer cells are no longer present and her hair is coming back in.  That’s what makes this difficult- knowing the cancer isn’t there but having to get these last treatments in and not having her immune system cooperating. 

**Le sigh**

I spoke with several people today about Elena and where we are at, and how she’s doing and it was so uplifting. I’ve been in this rut of knowing how much has changed in our lives and how this has changed me, that I haven’t focused on how little has changed for her. It’s business as usual, and for the most part, has been, since day one. We’ve had our bad days and a couple bad weeks stuck inpatient, but overall, we have been so ridiculously lucky in dealing with this. I need to remind myself of that more often. When I tell you that, on most days, if you came to my house and watched Elena and could ignore the fact that she only has peach fuzz for hair at 2 years old, you would NEVER know what she just went through. Not even remotely. 

One person told me today, as he has followed our “documentary” as he called it on Facebook throughout this past year, how inspirational we are, as a family, for dealing with this as we have. Another friend told me that she doesn’t know how I’ve done it- that she would be unable to function. Here is the truth: Elena is the inspiration. If she has no idea that she is sick, if she has been able to become accustomed to the needles and the “pukey” medicine, as we’ve named chemo, without batting an eye over it 24 hours later, than there is no other way to carry on besides business as usual. Yes, we have been stuck inside, staying in quarantine for most of cold and flu season, but to act any other way would just upset our children. And an even bigger truth: I’m not special. Not in some incredible inspiring way of overcoming this with flying colors. I’ve always described myself as a tough but emotionally sensitive person. Physically, it takes a lot to get tears from me. Emotionally, however, I cry over pretty much everything. And a year ago I would have never thought I could “get through” an experience like this. But really…what choice is there? When it’s your own child…you do whatever it takes. And if that just means getting up everyday and being a PARENT… No, that doesn’t make me super mom. It just makes me a mother who loves her daughter(s). Oh- I’ve cried, and screamed into my pillow and been filled with such rage and anger towards- I don’t know: cancer itself? And yes, God too. 

I remember our first trip to clinic, loathing that place with a tangible hatred. Watching the smiling nurses and doctors wanting to slap the grins off their faces. I didn’t want them to placate me with false happiness. I actually told her Onoclogist that her life sucks! No, I legit said that to the person in charge of saving her life. I mean, probably not my best moment, but I just couldn’t imagine a career in seeing innocent children sick.  She was taken aback, for sure, but responded with a small grin “I get to see them on the other side after we’ve beaten the cancer. Your life sucks more!”  Touch├ę. She gained a lot of respect from me with that.  I listened to Elena’s fellow oncologist as she showed me her “road map,” the drugs and dosages she would be taking and when. There was an obscene amount of information that day and I scoffed when I was told I would be able to use this jargon, with complete and total understanding in a matter of weeks. I hung my head and thought “Great. I’m going to be the first mother ever that just straight up doesn’t get it.”  But I did, like we all do. Had it been me that was diagnosed, probably not. But my child…it’s second nature. 

Nowadays, we walk into clinic with smiles, waving to our favorite nurses and saying hi to everyone that Elena crosses paths with. On our short days (2-3 hours), Elena has to be coaxed into leaving because she’s too busy coloring or is in the middle of watching cat vines on YouTube. While this makes Elena the most amazing two year I’ve ever known and ever will know, it doesn’t make me all that special. It means I’ve accepted it, and only because I have to, and am doing what needs to be done. You would do the same. No, you really would. I promise you that. 

Dear Loved Ones,

Waking up this morning and playing back last night’s event in my mind was surreal. I’m blown away, truly. I never thought so much good could come from such a terrible diagnosis. I wish I knew the head count for last night’s fundraiser…I can’t even begin to guess. 

The night started when Mario and I arrived with the girls around 7:30. With Elena’s counts low (her doctors did approve of her being out for a small part of the night), I kept her in a carrier on my chest. Initially, she wasn’t happy in the least to be confined and stuck on me. Even when her immune system is failing her, my spitfire wants to run wild. She does not want to be stopped or held back by anything or anyone. The hour that the girls spent there was overwhelming. So many people wanted to meet Elena and see her beautiful smile. Initially, she was only supposed to stay until about 8.  It was 8:30 when she hit her wall and had had enough. I’m so happy she was able to go, even if she doesn’t understand why we were there. Annalise was beyond excited about the event, thrilled that her teachers from last year came to see her!  It’s so important that Annalise feels and sees this tremendous outpouring of love and support for all of us. This has been very difficult for her, knowing the words “cancer”, “chemo”, “immune system” etc, but not understanding why certain things have changed. It’s something we work on everyday, and I hope that we’re doing right by her through all of this. 

After the girls went home (my sister was kind enough to take them and get them into bed), I was able to greet more people and do my best to thank them for being there. The Stafford Volunteer Fire Department presented us with cards that everyone had signed. These people have come into our home, twice in the past few months, to deliver the food donation given to us by Ocean of Love in Toms River. The week of Thanksgiving and Christmas, they took time out of their busy schedules to help us. Many were wiping tears from their eyes as Elena and Santa had a touching moment. And when Annalise climbed into the fire truck, joy of epic proportions was abundant from every single one of them as they watched her press the buttons, turning on the siren and the shock and delight in her face as they wailed. I’m framing those cards. Each one of their signatures mean the world to me and I look forward to the day that I can show Elena and tell her about those nights and the kind people that were a part of it. 

Then it was my turn to speak…choking back tears, I know I didn’t get to say everything I would have wanted to. Where does one begin? If I listed everyone that I need to, I would still be on that small podium more than 12 hours later. I’m so thankful- for the support from so many. It’s incredible. It’s uplifting and overwhelming. I’m thankful for the generosity from all of you, I truly don’t even want to think about where we would be without it. But most importantly, and this is the point I was trying to get across last night; I am thankful for your inspiration. You have all become my lifeline and source of encouragement. More so than I could ever put into words.  I hope you know that I mean it, with every fiber of my being. 

So thank you, to my dear friends that have called to encourage or let me cry to them. To my neighbors that have helped me with Annalise when needed and introduced me to the people that would be instrumental in getting through this journey. To old friends, and acquaintances who’ve shown up to offer renewed friendship and support. To new friends that have come into my life because of Elena’s cancer but will stay because I couldn’t picture my life without you. To family that cares and wants to fix things they cannot. To every single stranger that has given to our family, whether it was a share on Facebook of a fundraiser or you reaching into your pocket to help. Foundations, and doctors and businesses and nurses and….everyone. THANK YOU!!

It took me a minute to decide how to address this thank you letter. Dear Everyone? Dear People? No….Dear Loved Ones is appropriate. Because no matter what category you fall into from the above mentioned ones, I love you. All of you. For more reasons than I could possibly list or explain. And I will forever. 

Open the Windows

Children are such amazing creatures. They find joy and pure, complete excitement over the smallest things. 

Elena was very tired today, from the moment she woke up. So much so, that she napped on the way out to Philadelphia. Not entirely unusal when we leave the house before 7, but today we didn’t get on the road until almost 8:30. She was lethargic during chemo, sitting on my lap and snuggling most time. Even the nurses noticed she was not her usual, high energy self that they’ve all come to love and appreciate. 

Driving home, she was fighting sleep. To the point of tears running down her face; not from crying, but from blankly staring off into oblivion for an indefinite amount of time without blinking. Trying to cheer her up, I asked her if she wanted the window open, as it is absolutely beautiful out today. She cracked the smallest smile and nodded yes, not knowing what that even meant. The moment the window cracked, her eyes grew wide with excitement over this new found experience, and a smile of pure joy lit up her face. Carefully watching her wonder and delight as I’m driving was…such a beautiful moment. Stopped at a red light I spent the entire 2 minutes with my eyes glued to her from the rearview mirror, committing the moment to memory. 

It’s symbolic, I think, this seemingly small period of time. I’m upset to see Elena so lethargic today, and seeing as she slept beautifully last night I can only assume the effects of chemo are already starting to take it’s toll. However, driving down the long road of Rt. 70, the sky over cast and dreary, noticing Elena’s lack of energy…This is, more than likely, what the next nine weeks hold for us. However, with Spring right around the corner, feeling the refreshing breeze circulate through the car with the window down just a little and Elena radiating happiness, was a poignant reminder that Spring is the season of rebirth. Nature feels it, as the trees begin to bud in preparation. The birds begin to chirp louder than they have in months, hardly able to contain their glee. In a few short weeks all that is dead and colorless will be green and full of life. I saw Elena feel this today with that silly window open. I took a deep breath in and allowed myself to soak in this moment and look forward with the same joy and appreciation that she did. The next nine weeks aren’t going to all that great. But they can be good. They can be full of tiny moments, like the one today, where we can all take a deep breath in. Our Spring, our rebirth is coming, for Elena and for all of us.  Thank you, window ­čśŐ

My Center

Today has been incredible: with the online release of Elena’s story in the paper, I’ve been receiving such an overwhelming amount of support from so many and I’m beyond grateful for that. On top of which, Elena is the happiest and most energetic I have seen from her in months. I cannot begin to describe the joy I have seeing her this way…it’s…everything. This break from chemo was so needed and I’m loving every minute of it. 

My Facebook messenger was non stop today as I received messages from people wanting to help our family, free dinner at a local restaurant so Mario and I can enjoy a date night and several mothers that have been through this nightmare of having a child diagnosed with cancer. One in particular, Maddie, stood out when I expressed some of my emotions as we approach the end of treatment said, “Just allow yourself every and any feeling that comes up…fear, anxiety, stress and exhaustion, those are all valid. It’s ok to let yourself go there because strength and love are the center of who you are.”  It’s been a whirlwind of emotions from the very start of this journey- imagine the world’s largest roller coaster. Got it?  Ok, now pump that sucker up on steroids and multiply it by a thousand. Yeah, that’s the beast I’ve been riding since July. Though, for the most part, I’ve been relatively fair to myself in allowing these emotions without dwelling. For the exception of two: fear and anger. 

For as long as I can remember I have been a worrier. About everything. Stupid things. Things that are out of my control and do nothing but upset me, cause premature gray hairs and keep me awake at night. The fear that has set in since Elena’s diagnosis has been suffocating… I’m afraid that Elena will face side effects. I’m afraid she will relapse: Dear God I’m terrified of that. Hearing it the first time was devastating; having to hear it again would be…too much. I’m afraid that Annalise is being overshadowed and I’m not doing enough for her. These are just the ones at the top of my list, as I could dedicate an entire blog specifically to all of the things that scare the ever living daylight out of me these days. 

I can’t say I’ve ever been an angry person, not like I am now anyway. Everyone gets angry, sure, but you move past it, addressing the issue and carrying on. It helps when you have someone to confront, as I do not. The anger I have now is overwhelming and has filled me with rage and hatred that I have nothing to focus on. I am unable to confront cancer the way I would a friend or family member that angered me. I have nothing and no one to yell and scream at…no release for this rage. 

These two emotions have surfaced another: guilt. I have beaten myself up over the fears and questions that are left unanswered. I berate and belittle myself as a mother, thinking that it’s somehow my fault that I could not protect my children from this. I look at Annalise and my heart breaks that she has ever had to cry for her sister in the manner that she has. Am I doing right by her through all of this?  

 Yes, I am. Strength. I am stronger than I ever thought possible, me just sitting here and writing this as opposed to bouncing around in a padded room proves that. A year ago if someone had told me that this would happen I would have emphatically said “No! No, I would die!” But I haven’t. I’m still here, waking up each day, going through our daily routines and finding the balance of parenting now that Elena has cancer (some things have to change, but others just can’t). I don’t feel strong and I have said this before. But I think that’s what strength is- something as simple as putting one foot in front of the other, even begrudgingly, slow as shit and angry as fuck about it but doing it anyway.

Love. My world revolves around it. Those that love me and those that I love. And my girls take front and center in that aspect. They ground me and give me the focus I need to live in the moment. To be able to catch Elena puking in a bag one minute, to laughing about Annalise congratulating me on getting all of it in the bag the next. “Wow Mama, that was a GOOD one, and you got it ALL!” Pretty damn funny coming from a six year old. I never thought I could love someone as much as I do Annalise and Elena. They are my center. The center of my life and my world. They give me the strength I need and love that is my foundation. 

Strength and love. Anger, guilt and fear too, to name a few. But Maddie is right- it’s ok to feel those and let those emotions do what they will. But if you build your foundation on the positive it will get you through everything, even if it is just one day at a time. 

Cancer, mascara and skinny jeans 

The week following Elena’s diagnosis, I barely was able to shower on a daily basis, let alone put myself together in any way. The first trip we took out to The Children’s Hospital of Philadelphia was an early appointment and I refused to put make up on for that. “Who could possibly be put together in the oncology clinic?” I thought to myself. I just didn’t care- which is not the usual way I operate. I wouldn’t say I’m high maintenance, but I enjoy wearing makeup, getting fashionably dressed and having my hair in something other than an unkempt up-do of sorts. I mean, really…my whole life just fell apart, I’m NOT fixing myself up to go through this hell. Little did I know back then that staying true to myself, and putting the energy into maintaining my appearance would be the best possible way to stay grounded and connected to myself. It’s definitely not prevented me from being drastically changed, but it has helped me get through the day, each and every day. 

I’m not the only mother who thinks this way, as I sit in clinic and notice others who are neatly put together, lipstick staining their lips and skinny jeans tucked into their cute booties. I think initially it surprised me and I felt as if suddenly everyone would just expect me to not look my best anymore. I don’t know, maybe that’s true, but it actually feels good to stick with my daily routines as much as I can. Drying my hair, applying eyeliner and mascara, putting an outfit together as opposed to settling for yoga pants and a sweatshirt….don’t get me wrong, when I’m home, I adore my comfort clothes, can’t be bothered with a bra and refuse to suffocate my skin with make up. 

I’m sitting in the lobby of Annalise’s dance class, typing away on my phone App, very thankful we have two full weeks off from chemo for Elena.  Thankful, but ready and just as appreciative that I can  throw on my skinny jeans and mascara before heading out again in March. Not to be self centered or high maintenance, but to be ME. In any and every way possible through this experience. ´╗┐

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