I lied to you, Aaron tells me as we drive home from town. I don't even ask about what. I don't have to. There's only one thing that Aaron can lie about right now. He hardly leaves the house other than to attend medical appointments so there isn't much trouble for him to fall into these days. I'd have to say that he's been a bit too busy to have an affair and he certainly isn't off spending money on frivolous things since we have been living without an income for months. The only thing Aaron lies about is his health. And this is something he has done on several occasions when he believes that protecting me from the truth is his best option.
But what could I have missed over these past weeks? Don't I know everything? I am the record collector for this journey of ours, the one with all of the data hot off the press, at least this is what I've imagined. I can hardly breathe as I watch him press his lips together. I study his fingers as they dig into the steering wheel. I hear Sasha cry in the back seat and have no explanation for why; a minute earlier he had been smiling. A minute earlier I had been badgering Aaron, pushing him to tell me why he has been distant and agitated. I have my answer.
I lied to you. The MRA and MRI that they did today was not because they needed further study of my sinus cavity to check for infection. When they did the CT scan last week, the radiologist immediately noticed something. He thinks it is an aneurysm. The words rush out as if detonating. Aaron shakes as he speaks, and I assimilate his anxiety and begin to tremble as well. It feels as if the whole car is bouncing and Sasha's cry picks up with the simmering tension. I want to crawl back to him but we are only minutes from home and I know that if I move, I will split wide open. In that moment I am everywhere and nowhere; the words on my tongue electric. Back up and tell me from the beginning, I manage to say, then clutch hold of my seat beat with both hands and hold it tight against my chest.
Last week when I had the CT scan for my sinus infection, the radiologist immediately told Amy that there was an incidental finding that needed further testing. It looks to him like an aneurysm and they needed to do an MRI and an MRA to confirm what is present. They couldn't do it right on the spot and I decided to just wait until our next appointment. I told Amy I didn't want you to know anything until I could tell you that it was all a false alarm. So I lied to you and said that they had not done a complete study of the sinus and that this was why I needed more scans. I wasn't going to tell you anything until we have the results.
His face is so pale and as our eyes quickly meet, I know that Aaron believes that this could be the truth of our situation. I ask him how certain the radiologist is that this finding is, in fact, an aneurysm. I don't know. I didn't see a report. This is just what he said after his first look. It was an incidental finding. Who knows?
When we were younger and had never contemplated cancer, Aaron used to tell me that if he died prematurely, he imagined it would be from a brain aneurysm like his grandmother, Eleanor. It doesn't feel like a coincidence that Aaron is suddenly being told that he might have one and not simply because they can be hereditary.
Do you think it's true? I ask him. It could be. I don't know. I'm sorry. So sorry, he says as we stop the car in front of our house. I find a way to open the car door and make my way to Sash. With him in my arms, I lean into Aaron, who waits for us.
Why didn't you tell me? I ask.
Because of this. Because you've had too much to deal with. You've had too much for years. I know you didn't need anything else. He chokes on his words. There is no relief for Aaron in this confession and no relief for me in knowing, but now we both know and I am not left wondering why Aaron is so withdrawn nor fearful that our love is slipping away from me. Aaron routinely wants to protect me by withholding bad news but ultimately I am going to learn the truth and find myself in the same position I am now. My understanding of events is delayed, but nothing has changed of the situation.
You lied to me again, I say.
I did, he admits. I wanted to spare you the agony of waiting.
It's not the first time.
He looks at the ground. I know. I touch his face.
But it is the last, yes?
Sasha pats Aaron's face. We stand there together, the three of us, and I don't know who is holding who up anymore.
In 2006, Aaron's blood counts began to trend downward. We didn't realize this at first because his doctor at Sloan Kettering believed that he was the only one who needed to have that particular information. He felt his patients would not be able to make sense of the trends even a pathologist like Aaron, who also happened to know a significant amount about CLL. By the time that we realized how sick Aaron was, we were on the verge of treatment. This is when it all began, our dance with chemotherapy and staving off this disease, but this is a story for another time. Aaron braved this round with his usual enthusiasm and energy and I attended every infusion and appointment so that he knew that we were in this together.
Time passed and CLL faded from our immediate consciousness as we focused once again on building our family. The time between the oncology appointments lengthened as my appointments with our OB grew closer together. In the last months of my pregnancy with Sash, Aaron had one of his usual check-ups. It was snowing and I was on bed rest for pre-term labor and so Aaron told me to just skip it. He swore that he would give me all of the details as soon as he was driving back to work. I sat with the phone in my hand throughout that hour and only allowed myself to relax once Aaron phoned in the all is well. Sash was soon born and our lives felt normal and blissful and I wanted nothing more than to just be the family I had always dreamed of and not worry that something could tear us apart.
Aaron's next appointment was three weeks after Sasha's birth and once again Aaron told me that I should just stay home. The appointment was at 8 am, I had to nurse the baby, there was no way I should be rushing off for a routine appointment, he reasoned. For some reason I knew that I needed to be at that appointment. I breastfed Sash and pumped while I dressed and raced to Aaron's cancer center. Aaron was surprised to see me when I walked through the door but when Dr. Bar began to discuss the on-going progression in the white count and how we were heading toward treatment once again, Aaron's face revealed no surprise, only resignation.
Dr. Bar realized that Aaron had not shared this information with me at the same time I understood that my life was not what I thought it to be. Milk leaked through my shirt as I stared at the florescent lights above rather than at Aaron. I asked Dr. Bar to explain what was happening and how much longer we had until Aaron needed chemotherapy again. At that point, it was unclear. White blood cell counts were rising, something that had not happened previously, and the other counts remained close to normal range. We'd just have to watch and wait. I would not allow myself to cry, not then. I told Aaron that we would talk later and tried to tell myself that this was just another day for myself as a new mother.
Sash and I settled in at home and as he slept, I tried to think through the issues and what it all meant for our new life. When Sash began to cry in his basket, I raced up the stairs to him, tripped, and hit the corner of my eye on the console. Only as the blood ran down my cheek did I allow tears to join the flow. Why didn't you tell me? I'd asked Aaron later that night. I wanted to give you those months to think only of the pregnancy and the baby. You deserved it.
That time was my gift but our honeymoon life was over and we were soon headed into new territory--more chemotherapy followed by this transplant. I have never able to attend every appointment as I had the first time round but Aaron promised that he would never keep secrets from me again. He lied. And now we are once again waiting to see what the future has in store for us.
While we feed Sash his dinner, Aaron begins to explain what he has learned over the past week about current treatments for aneurysms. Naturally he will need surgery if it is an aneurysm, he tells me, but he wonders if he is eligible for surgery given the fact that he has just had a bone marrow transplant. Is it too risky to operate on someone who has already been through so much and is currently immunocomprised given the risk of brain infection from the procedure? The discussions rise in and out of every moment. We are reading to Sash and another question or fear or issue pops up. We are bathing Sash and I recall the crush against me as I heard those words I lied to you.
I feel like I am short circuiting; the light flickering in and out. With the smallest nudge each day, the life inside me is dimmed further. Someone needs to get inside and tighten up the wires and ultimately that person is me but I can't bring myself to pick up the toolbox and get to work. Instead I cry as I look in the mirror and wonder who the woman is staring back at me. I don't recognize my face anymore. Everyone tells me that I look exhausted. I feel like I have aged a decade this summer, another one this past week. Have I been pushed to my limits?
Aaron is more resolved now that we are in this together. I know that things are going to work out, babe. This is just another little misadventure. This has become the phrase of the month but no matter how much I can see that he believes this, the shrapnel from each battle burns in my skin still. The wounds have not yet healed and so I cannot throw open my arms and say to this new possibility, come danger I am ready for you.
We are on a tightrope together, Aaron and I. We must both remain steady so that we don't throw the other into a state of free fall, but it isn't easy. My feet are not able to cooperate--always preparing to race off to the next calamity. At night, I touch Aaron's bald head and wonder where the scar will be from the procedure and what it will look like. I imagine returning to the Boston Marriott to take root in our room once again while Aaron undergoes brain surgery. All of the complications swirl in my mind as Aaron had explained them, and I must remind myself that we have managed complications and will continue to do so. I begin to believe that this scenario is definitely true and somehow it all begins to fit together.
Aaron had to have CLL so that he would need a stem cell transplant so that he could get a sinus infection and his cautious transplant physician would naturally order a CT scan because you can't take any chances with a transplant patient. The aneurysm could then be discovered so that Aaron would not suddenly drop dead unexpectedly. Everything over these past years was leading to precisely this event and I tell myself that I must find a way to be grateful that this has happened so that Aaron will be saved.
Hang on, I say to this aneurysm. Don't rupture. To Aaron, I mandate that he stop exercising immediately and try to remain calm. Of course, Aaron will have none of this. I'm a doctor. This has nothing to do with exercise. If it's going to rupture, it will. Nothing I can do right now will make it any better or worse. He can see how much this upsets me. I'm sorry but this is the truth. He will not be deterred. I need to get back into shape. But he is clearly anxious, sleeping worse than usual, distracted at all times. I try to meditate on what it means to be calm and at peace, and realize how much I crave this feeling. Wide open fields with no dark corners sweep through my mind.
I want to be silly and carefree and not worry, I tell Aaron at night as we lay huddled up together.
When has your life ever looked like that?
It hasn't, but I need it to. And soon. I need to be able to run after Sash without fear that he too could face disaster on this stone or that hole. I need to feel less careful, less strangled. I need to let go. Instead, I concentrate on the feel of the sheets against my skin and the man beside me who is still recovering from his transplant and yet is ready to take on this new challenge if necessary. I want to meet his strength but feel so tired, more weary than I ever have in my life.
Just a misadventure, he whispers into my ear and we surrender to our new resting state, one without actual sleep.
After several emails with Dr. Soiffer where he promises that he will soon deliver the verdict, we learn that the results of the scans are negative. The vessel was a normal variation. I see the news first and I walk over to Aaron and wrap my arms around him.
You will not drop dead from an aneurysm.
I hope not, he says.
He looks at me. No, I won't. It will be okay.
I rub his shoulders. It is okay. Dr. Soiffer wrote. Everything is fine.
Aaron stands up immediately and reads the email. He grabs my hand. We made it through.
The other night Aaron races into our bedroom at midnight, his shirt lifted. You need to take a look at this. He points to several enlarged lymph nodes. I feel like I am about to faint as he paws at my hands to touch him. Is this the cancer coming back?
No, it's from the vaccine.
Are you lying, Aaron? I can hardly move off my pillow, so heavy with this new burden.
No, my arm is swollen and it is impacting my lymph nodes in this chain.
Now I am annoyed. If you knew this, then why are you racing in here like it's an emergency? You scared me.
You told me to tell you everything right away. He smiles as he strokes my hair.
Yes, Aaron, yes I did.
Each day we say now with glee and gratitude, you will not drop dead of an aneurysm or when things are tough at least you don't also have an aneurysm. Aaron will be healthy again. Aaron is exercising, his weight is up--some from the increasing peripheral swelling in his legs, but also so far from maintaining a decent appetite despite some complicated GI issues. He is still itching but it is fairly well managed by his drug regimen. His laryngitis has improved. We have essentially begun to see evidence of GVHD in the skin, mouth and GI tract this past week. I will write more on this soon. And the vaccine protocol is creating more travel time between NY and Boston than I would like and additional discomforts from the vaccine reactions and skin biopsies, but we think it is worth it. More on this soon as well.
We had our most recent chimerism test this morning and should have news on engraftment status in about two weeks. I also learned that Aaron has once again lied in not sharing with me that there has been a continued decrease in his neutrophil count on the grounds that it was not worrisome to him until now so there was no reason to point it out. He is officially neutropenic today but his doctors don't want to augment him with neulasta or neupogen yet because of the vaccine trial so we must be more vigilant than ever about infection.
I asked him once again today to promise not to withhold details from me but he seems to feel that it is his duty to shield me from these bullets as much as he is able. So the facts I present here may or may not be the whole truth. Please take this up with Mr. Misadventure.