Though what you might see in our life today may not look so wildly different than a few months ago, we have crossed to a new place. I am just getting to know this current life but I don't have much more time to inch toward it; soon we will inhabit these altered days so fully that what we had before will be gone altogether.
I know where we want to end up. I see the destination. But there is so much between here and there that I cannot even begin to measure the distance. Even if Aaron is cured after this transplant, we cannot pretend that we have not been on the brink of ruin. Our lives are never going to be the same.
Today Aaron and I signed our wills. I marveled that I managed to put pen to paper so many times on so many pages; my mind disorderly, my body dishelved, I was on the verge of collapse. When Aaron proclaimed it was time to get ourselves in order; I resisted. Had he not been ill, I would have welcomed putting everything into place for Sasha; but with all that is looming, considering such things as trusts and powers of attorney and living wills, my world wobbles.
Aaron is plagued with concern over our welfare; he will protect us despite any cost to himself--work long hours, push himself to the edge of exhaustion, formulate plans for how we might survive without him or how he will safeguard us going forward with further business opportunities. I failed you, he tells me frequently as we speak in the darkness of sleepless nights. He had not taken out a significant life insurance policy prior to diagnosis and now he is ineligible. He questions his decision to become a doctor believing that if he had been working instead of studying and training, he would have provided some reserve if something horrible should go wrong. Worries like this are a trap door. If I get too close, I will never bring myself out.
This week is difficult not only because of the will but because we are on the full treatment regimen again. Every day this week, we are at the hospital. All day on Monday; then Tuesday through Friday, chemotherapy starting mid-day after Aaron has put in nearly a full day's work. It is nearly impossible to get him to come home once the IV is removed. If there are too many cases waiting for him, he returns to his desk to keep plugging away. He doesn't like to keep patients waiting on their biopsy results. His conscientiousness is one of the things that people love most about him--I only wish he would learn to treat himself with the same regard. For the next three weeks, it will be long days on Monday only. Then we begin again and will continue on this way until transplant.
Most nights on these treatment weeks, I wake to find Aaron gone. My hands tremble as I stumble to find him. Seeing him physically wretched and miserable, my heart aches. The other night, he could not sleep because he worried about Sasha's safety. He believes that the steroids are making him a bit paranoid. He pressed his face inches away from Sasha's so that he could feel his breath drawing in and out. I can't sleep either with nightmares of my own. Each night robbers and murderers invade our home to steal of our life; but I know that it is the leukemia that is the true thief.
There is so much to learn and navigate in this process. It is difficult for Aaron to sleep and to eat, he is sluggish and colorless, and there is pain and discomfort, though perhaps not to the point of last month which is a blessing. With the last round he gained nearly 25 pounds of water weight in just a few days then lost more than that a week and a half later. Swollen and bloated, he found it difficult to do almost anything. He was so exhausted he could hardly move. He lay buried under the covers in bed, his hand held up: Not now. I can't. Some of the new medications are helping to ease the side-effects and we are also more prepared for what is to come so while this month is bad, it is not as bad. There is a blessing in this.
I worry that Aaron is becoming too thin but he tells me that he wiry and fit, with the energy of ten men. He is the six million dollar man, he assures me, and will come through this test of endurance and courage, stronger than ever. He rarely misses his morning workouts, commited to his well-being and endurance and to living his life as normally as possible. It is a testament to his strength and discipline physically and mentally that no one ever knew that he was sick the first time or with this current treatment unless told.
I have so much to believe in with this man. This man does not let me down (or anyone else for that matter) no matter what he may think. Aaron is substantial in this world: vital, robust and optimistic. It is my own anxiety that runs me down, my baggage from my motherless abandoned life that brings me to the dark spaces. I want to be less loathsome with my fear but it is a beast; bred in my childhood, it has known me inside and out for too long.
With my day-to-day immersion in Sasha, the burden of what we are facing nearly slips away. Absorbed and delighted with each new skill, Sasha protects my sanity. The days simply pass as I hover over him and I feel comforted by this domain, safe and peaceful despite our fragile circumstances. Sasha smoothes out my tangled nerves even on his most restless teething days when nothing I do comforts him to the same degree that he buffers me. Some days I can pretend that I am just a mom to a young child and ignore the growing list of things that must be accomplished without apology. It is an illusion, a luxury, to attend fully to Sasha's needs, to live in this dreamlike cocoon instead of gaining mastery over our new territory. And it has been my salvation.
But last month, I woke up and realized that even though the path we are walking is not by my design, it is the one we must walk. I may not have wanted to see it, or accept it, but our new beginning is not just the birth of our child, but facilitating the rebirth of Aaron. The understanding brought me to a very low place, one I am now ashamed to recall. I completely lost my faith in this disheartened state and had claw myself up moment by moment until I could become once again the partner that Aaron needs and deserves. But I must admit, I did not know if I could sustain this fortitude. Would I be able to trample the fear instead of being beseiged by it, day in and day out, even when Aaron did not have the energy to hold me up with his belief? I hoped I could remain pure in my faith, but how do you know what you are capable of until you are called upon to produce more?
And then an angel intervened and just in time. My friend, Lisa, forced us to consider what we were doing in traveling this path with just a few to accompany us. This was no easy task as Aaron is fiercely independent. In the end, I imagine Aaron agreed to opening the doors to our current circumstances for myself and Sasha more than for himself. I am grateful to him for this selfless gesture as my reserve is now bolstered by the miraculous message that we are not alone in this. Feeling alone in this world is my usual state of being and has certainly been magnified and pushed to extremes with this threat to Aaron's life. Now when I feel overwhelmed, I have only to look at the Caringbridge site or the personal emails or other generous gestures which arrive each day, and suddenly there are invisible fingers to gently nudge me away from my struggle with limitations and further guide me back on my way to examining rich and wonderful possibilities. With this support, a new certainty has entered me: this journey is one of reclaiming full health and I will embrace it.
A sincere welcome and thank you to all of you who are participating in this healing experience. What a difference you have made already.
This post was also published on Aaron's website: