Hope Chest

While I was visiting Ohio last week, I overheard my sister, Cassi, and my dad’s lovely wife, Janet, discussing heirlooms. I was sitting on the couch in another room – staring out the window and silently sobbing – while they were talking about china and knick-knacks and other things deemed inheritable, when my sister brought up the hope chest she had during high school. For half a second, I stopped crying and smiled at the thought of dreaming of a future. Collecting things to make your life all that you could possibly dream of. Or, better stated, cultivating hope.

My sister’s high school years took place in the late 70’s when hope chests were all the rage. Seventeen magazine featured advertisements from Lane furniture showing a young woman adoringly gazing at her hope chest, longing to fill it with the belongings she would feature in her future home: the silver she would use to host her first family gathering; the linens she would smooth each day as she made her bed; the picture frames she would display photographs of her wedding and, eventually, her newborn. My sister had one of these and she actually worked hard to earn her prized collection. Cassi was (and still is) a very organized person. She color codes her clothes and hangs them according to length, which is how she always knew when I “borrowed” something without asking first, because that type of order makes absolutely no sense to me. Inevitably, I would always put the “borrowed” item back in the wrong place. I love how aesthetically pleasing her closet is, but I do not possess these same traits. In fact, the chair beside my bed is the best I can do as far as organizing my clothes. I hate laundry. I’m pretty confident this is how it will always be.

So, when Cassi and Janet rounded the corner to see my desolation, the halt of their bodies was synonymous with a needle making its deafening scratch across a record.

“Are you okay, sweetie?” Janet queried, knowing the answer before asking it. Janet is intimately acquainted with pediatric cancer in a manner completely separate from her inherited grandson. In a bizarre twist of events, the hell Janet faced with rhabdomyosarcoma – a pediatric cancer defined as a soft tissue cancer – took the life of her adult husband. He’d never had cancer as a child, so to have her husband pass away after a brief battle against a cancer that typically strikes children, was undoubtedly tragic.

Sometimes I feel guilty for reintroducing her to this world despite knowing she has nothing but love and compassion for our situation.

My sister sat down next to me and held me while I claimed my temporary insanity. Muttering about losing my Ben. Weeping in despair. Frightened about the unknown road before us. Again. She mentioned the word “HOPE,” which sometimes sounds so foreign to me. At least it did to me then. I want to have hope. I really do. But my hope chest was non-existent.

I never collected for the future. When I got engaged (at the age of 27) my mom took me to Williams-Sonoma and bought me some high-end kitchen items – all of which have lasted longer than either of my marriages. I don’t have a hope chest. I have a memory box. It holds the past: delicious love letters, jewelry from dead relatives, and tidbits that – at one point or another – have made me happy. But nothing for the future.

Why is this?

Was this a foreshadowing of my inability to have hope? The silver I would eventually pack up and move out of my home; the linens I would permanently strip from a marital bed; the picture frames that temporarily housed the smiles of a fleeting love. The facts are undeniable that I’ve struggled to make good choices when it comes to men. But this is different. This is my child. My son. My heart. 

So, I’ve decided to amend my ability to have hope. As I leave the room that holds my son as he battles a physical demon, I have hope that this new treatment is torturing every bad cell as much as those cells have tortured my beautiful son over the past 10 years. Despite my inability to touch his radioactive body, my love attacks the radiation that keeps me at arms length. I know Ben feels it. Hopefully, it’s bringing him comfort during this current storm.

Hopefully. Hopeful. Hope.

I rip the paper gown from my body and strip myself of the rubber gloves that protects me from the radiation, depositing them into the contaminated waste receptacle by the heavy, lead-lined door. I smile at the fantasy of having a drawer full of disposable clothes as I step over the threshold, leaving my brave son to continue his war on his own. No chore on earth could prepare my son for adulthood like this one can. And while it hurts beyond belief, I have to have hope that he will use this experience in his adult years to teach the world a thing or two.

And I decide that it’s okay that I’ve never had a hope chest. Besides, all the hope I hold now could not fit comfortably in a single chest.

It’s simply overflowing.

 

No doubt in my mind…

It all changed yesterday. I had to turn myself off. A reboot, reset, update – whatever you want to call it – and get on with it already. I’ve spent the last several days doing a tremendously bad job of hiding my tears and repressing massive panic attacks. Of course, I’ve been trying my hardest not to have these meltdowns in front of Ben and Madeline. Fortunately, Ben has been “gaming” with his beloved cousin and Madeline has been swimming up a storm during this visit, so they’ve had little time to notice what I’m doing. My sister and dad, however, have not been so fortunate.

I know the frequency of my panic attacks have increased because of what I’ve recently learned about my Bean. I feel helpless, and – at times – hopeless, and I guess I felt somewhat safe within the confines of my dad’s house and with my children distracted… enough to allow myself to cry in an attempt to get it all out of my system. Now, I know I can’t release all of that – I mean, I haven’t found the “miracle cure” to let it all go or anything – but I’ve been better at managing my emotions in the past. However, this visit home has allowed me to be introspective. My phone hasn’t been working properly so I haven’t spent a lot of time using electronics as a coping mechanism. And I brought my coloring book with me so I could try to focus on that instead of allowing my breathing to elevate to proportions synonymous with a volcano explosion. But really, I’ve just spent a lot of time with my own thoughts.

I’ve been avoiding and distracting myself for so long that I kinda forgot how to think. Ugh. I’m not explaining this very well. Bear with me. Sometimes, all I do is think, but I think about all the wrong things. The “woulda, shoulda, coulda’s.” The ugly scenarios. The worry. The fear. So, during yesterday’s reboot, I was encouraged to change my thinking. So, here goes…

There’s no doubt in my mind that Ben will survive this.

This is what he needs to see from me. I don’t want him to look in my eyes and see the fear. I want him to look in my eyes and see a fierce dragon ready to kick the ass of whatever is trying to hurt him. I need him to garner strength from me so he can be ready, too. I want him to know he’s not fighting this alone. He’s not alone. Madeline’s not alone. I’m not alone.

There’s no doubt in my mind that Ben will survive this.

Watching him be tired and weak is temporary. It’s evident to me that this relapse is wearing heavily on him. All he’s wanted to do is play video games with his cousin, but even that seems to be wearing him out. I know he’s scared. I know he knows that I’m scared. He’s a very wise child and he can see right through me. I need him to see the impenetrable force of a brick wall when he looks at me. I’ve been so transparent with my fear, but the need to shift that to strength is imperative.

There’s no doubt in my mind that Ben will survive this.

Some of us tell our children that they can be anything they want to be when they grow up. Why can’t that translate to this situation? Ben, you are allowed to grow up. You are allowed to become a young man. You are allowed to get your driver’s license and go to college (or not) and fall in love (or not) and be whomever you wish to be….

There’s no doubt in my mind that Ben will survive this.

I had grand plans for this trip and it hasn’t turned out how I expected. At least, not for me. I knew that all Ben would want to do is hang out with his cousin and forget about what’s coming up in a couple of days. I was thinking that this would be an opportunity for everyone to come see him. I wanted him to feel the love that so many people have for him. But he’s simply not up for something like that. Everyone coming together was for me. Not for him. It’s not that he doesn’t love all the love, it’s simply because he’d be so overwhelmed and he’s already just so tired.

And I’m ashamed to admit – but I’m going to anyway because admitting I have a problem is the first step to recovery (so they say) – that this trip would be an opportunity for people to say goodbye.

My heart is racing just by typing that sentence. I can’t say that putting it out there has made me feel better, but there it is.

However, I’m replacing it with this:

There’s no doubt in my mind that Ben will survive this.

I’m sorry there’s no get-together today and I’m sorry that I hardly saw anyone on this trip. I really did have something else in mind. And I want every person in the world to meet Ben and Madeline because they are simply amazing children. I wanted them to feel the love they have surrounding them before heading into this next battle and I know so many of you were looking forward to finally meeting these amazing little people. But there’s no doubt in my mind that all of you understand.

Just like there’s no doubt in my mind that Ben will survive this.

 

 

 

 

 

 

adrenal overload

I wouldn’t have wanted to be a part of my inner circle yesterday, for this sweet little redhead had a pretty serious meltdown.

My hand was literally on the handle of my suitcase, which was filled with a week’s worth of clothes for myself, Ben and Madeline. I needed to be at my ex-husband’s house within the next few minutes in order to get to the airport on time for our flight to Chicago. We were headed to the Windy City to attend a conference specifically for Neuroblastoma families – ALL the important doctors were going to be there, and we wanted to pick their brains about the best way to save Ben. I’m usually running a little behind, so when I saw Matt’s name pop up on my phone,  I think I answered with “I’m on my way right now.” He cut me off to ask if I got the call from Dr. Macy.

“What do you mean?” I asked as my body filled with the natural defense mechanism of adrenaline – my glands are always happy to produce this in massive quantities. The buzz always starts in the pit of my stomach and shoots out to each limb, the metallic taste overtaking my mouth and pressuring my internal capacity to its limit. The only option then is to let it violently shake my body in hopes of finding a way out.

Matt dropped the bomb: “There’s a new spot.”

We had spent the previous day at Children’s doing extensive education on this MIBG therapy. Ben will be the first kid to receive MIBG in Denver (many other kids in Denver have done this MIBG stuff but have had to travel to other states for therapy) so it’s kinda a big deal for Ben to be the first. And everyone is being extremely cautious. Part of the pre-treatment workup was to scan Ben for hours. Okay, maybe not hours, but it was way longer than a routine MIBG scan. As always, Ben handled it well, lying still for a very long time while the gigantic machine perused every inch of his body.

Dr. Partrick had removed one cancerous lesion from behind Ben’s collar bone on July 1st, but we knew another spot remained. To learn that there was another spot, which popped up in less than two weeks’ time between scans, completely caught me off guard.

I dropped the handle of my suitcase, which crashed to the floor with a resounding thud. My body followed directly after –  tears immediately spilling over but without sound as I listened to what Matt was saying. “New spot… definitely in the skull… possibly in the brain.” As he continued to explain, my silent tears exploded into wracking sobs. He said that he’d get Dr. Macy on the phone so we could talk about this new development. I forced out something sounding like “okay” and disconnected.

I have no idea what this scene looked like to the average outsider, but I’m sure it was a full-on ugly cry. My body swayed back and forth as I wept uncontrollably, my hands fisting in my hair, stopping just short of pulling it out at the root. My mind reeled. This simply cannot be happening! My son! My darling son. A new spot is really bad. And infiltration into the brain would be super-size bad.

Call dad. Call dad. Call dad. I pulled up my speed dial list and anxiously awaited while the rings went unanswered. He always answers. He needs to answer. PLEASE ANSWER! This added to my distress, which had by then elevated to hyperventilation status. I left a voice mail.

“Dad…ppleaase… call as… soon… as possible.” And then some other fractured words which probably included: “Ben, spot, disease, brain, scared, bad….”

Just in case, I called right back. No answer. I called his wonderful wife to see if she knew where he was. I blurted in staccato: “Ben… tumor… brain… bad… please have dad call ASAP.”

Those freaking adrenal glands weren’t giving up. My body continued to fervently shake. When the phone rang, I nearly jumped out of my skin. I picked up but could not squeak out a greeting. The sobs were audible, though, so Dr. Macy started talking. “…Could definitely see the lesion in the skull but needed an MRI to determine if it’s in his brain.” Tears. Sobs. “Come in today.” Tears. Sobs. “I know where you’re going in your mind, Sarah… try not to do that….” Tears. Sobs.

Devastation.

Disconnect.

I’m sure my neighbors were frightened by what happened next. I screamed. I’d never heard a sound like that before, so it was shocking to realize it coming from me. The wails kept rising, louder and louder, until they crashed into a whimper, allowing me to catch my breath. When my dad called, I started off calmer but quickly escalated to actual hyperventilation. He kept me focused while encouraging me to breathe. It was one of the most difficult conversations I’ve ever had.

My friend, Sarah, dropped everything to come to me. My friend, Rhonda, rushed to the hospital to whisk Madeline away and keep her occupied. Matt drove and I’m not sure what I did. By then I was out of tears. During the MRI, Ben could see me in the mirror. He kept blowing me kisses as the machine loudly captured what was going on in my sweet son’s brain. My eyes burned with the threat of new tears as I tried to keep the look of worry from crossing my swollen lids.

Dr. Macy called rather quickly after the MRI to inform us that the lesion wasn’t on the brain. It’s bad that there’s a new spot – and so quickly – but it’s GREAT that it’s not in his brain. We’ll move forward with the MIBG therapy at the end of the month. And while we missed the trip to Chicago, we’re still able to take the second leg, which is a week with my family and friends in Ohio.

It will be a nice break. And boy, do we need one.

rebuilding

I learned 10 days ago that my son’s cancer has returned. Usually, I’d get right on my blog and start writing away about the options as well as including my hopes and fears and all the other nonsense that flies through your head when you’re given tremendously bad news. But this time, I did my alone-time crying and left it at that.

I guess I’m tired of stating and re-stating how cancer has obliterated our lives.

My coping mechanisms have always included an intense desire to hide coupled with my ridiculous sense of humor. And even though I write on my blog – a very public outlet – I’m still able to hide behind my computer screen: refusing phone calls, ignoring emails, saving texts to read later. It’s strange. I tell all of you absolutely everything as long as I have this computer barrier between us. And you all want to help. You all want to check in and see how we’re doing. And I appreciate it. I just can’t handle it in person. I can’t face you. I can’t face the pitying looks. I can’t face the hugs (even though I want them.) And if I do have to face you, I pull out my weird sense of humor just to give you the semblance of me being slightly okay. Also, I can’t face the advice. I rarely ask for it, even from other cancer moms, because we’re all so different. And when it comes down to it, nobody knows what to say. I’ve heard all the advice out there… I promise that you have nothing new to offer. No offense, but by this late period in the game, I’m extremely well-steeped in what options there are for my son, which, unfortunately, are rapidly dwindling.

There is a ridiculously high chance that I’m going to lose my son. And with each relapse it smacks me harder in the face. Please, before you castigate me for not embracing each precious moment with my children, please re-read my entries and note that I HAVE DONE THAT every step of the way. It’s just when the beast returns rearing its’ ugly head, I have to rebuild my army. I have to restructure. Sometimes, that includes changing key players in my inner circle. Sometimes that means reorganizing a plan of attack. We’re past the point of asking “why.” We are now in survival mode. How long can we keep him healthy enough to enjoy his life? What are his limits? What are mine?

How do we do it? Honestly, that’s my favorite sentiment from friends and well-wishers: “I don’t know how you do it.” Well, friends, I don’t either. I don’t wanna do it. I wanna lay on the couch and watch stupid movies and ignore all the nonsense. And sometimes I do when I’m alone. When the kids are with their dad, I sometimes pretend that cancer doesn’t exist. Yesterday, in my alone moments, I put on my headphones and listened to music at a deafening level, singing at the top of my lungs (probably much to my neighbor’s dismay) and watched myself dance in the mirror. Embarrassing? Only if I get physically caught. Relieving? On some level, yes. I can still “get down” (at least in my own mind) and if I can’t hear myself sing because of the loud music pumping through the headphones, then I think I sound like a real contender on one of those Idol or Voice shows or whatever stupid television programming we numb our minds with. Hey, I could be addicted to crack or some nonsense like that, but I’m navigating this solely on antidepressants. Well, and sometimes a little beer.

Regardless, here we go again. I’m madder than usual. Mad that another summer has been squelched by cancer. Mad that my son has to do this AGAIN. Mad that “important people who could make changes” simply don’t give a crap about Childhood Cancer. That has been made very clear – extremely clear – that it’s not going to change. There are wonderful people out there fighting to be heard, fighting to save our children, and I applaud them. I am grateful for them. But it’s depressing that all their hard work is falling on deaf ears. The people in charge of shifting the attention to children probably get kickbacks from someone stronger… which just doesn’t seem right. It takes a true bully to not give a shit about sick children.

So, when I went to get my bangs trimmed yesterday, it was really one of the first times I was in contact with someone who knows Ben very well (she cuts his hair, too.) She has known us for a long time. She reads my posts. She is actively interested in what’s happening in our lives. So, when I saw her, I had to deal with the tears I knew would be coming. She hugged me tight and asked how we were. Well, frick. What does one say? “We’re scared, Tawnee.” And then I didn’t say much else other than explaining the situation and what options we were considering. She did the rest of the talking. Words like “you’re so strong. and kind. and sweet.” All descriptors that she used for my children as well. Then she said, “I’ve seen you go through so much. I’ve seen you at your lowest. I’ve seen you completely broken. But now I see you strong again.” She applauded me for making some serious changes in my life over the years and then she said this: “I admire you.”

Now, I hear “you’re so strong” and a lot of other varieties of similar statements, but “admire?” That one is not as common. And it brought tears I wasn’t ready for, which if you’re getting a haircut, any moisture on your face is going to attract little bits of annoying hair. She let me know that my words were reaching more people than I could imagine. And that they’re actually helpful. My open heart is actually doing something for the greater good. She picked the tiny pieces of hair off my face and wiped my tears, which was the closest thing to being “mothered” than I’d had in a very long time. It’s hard to let myself be that vulnerable in public. Here on my computer? Sure. But in person? Letting her see my pain was something I sincerely have trouble with. I don’t often trust people with that piece of my heart. There are many reasons why, but letting my pain out in my blog often feels safer than letting someone hold me when I’m crying. Probably my cynical nature. But I’ve been shown – harshly – that some people pretending to care simply don’t have the capacity when it comes right down to it.

So despite wanting to hide and despite letting my emotions flow here rather than “in person,” it felt meaningful that someone could even begin to gather something from this terrified person hiding behind her computer screen pouring her own heart out to a land of anonymous hearts. We’re beating in rhythm for once. And that is truly replenishing to me.

We’ll rebuild this army. And nothing will stop us.

Until it does.

Then we’ll rebuild again.